EXPLORING THE EXPERIENCE OF MOTHERS WHO HAVE CHILDREN WITH
ALBINISM IN TANZANIA: A CRITICAL ETHNOGRAPHY
by
EMMA B. STROBELL
BScN, Trinity Western University, 2010

Thesis
Submitted in Partial Fulfillment of the Requirements for
the Degree of

MASTER OF SCIENCE IN NURSING
in the
FACULTY OF GRADUATE STUDIES
TRINITY WESTERN UNIVERSITY

March 2020
© Emma B. Strobell, 2020

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Table of Contents
Abstract ............................................................................................................................................7
Acknowledgements ..........................................................................................................................8
Chapter One: Introduction and Background ..................................................................................10
Background ....................................................................................................................................12
Albinism.................................................................................................................................... 12
Human Rights and Albinism ..................................................................................................... 14
Mothering and Albinism ........................................................................................................... 16
Significance of Findings and Implications for Nursing ............................................................ 18
Definition of Terms........................................................................................................................20
Albinism.................................................................................................................................... 20
Mothering.................................................................................................................................. 21
Health ........................................................................................................................................ 21
Human Rights ........................................................................................................................... 21
Social Constructions of Gender ................................................................................................ 22
Purpose and Research Objectives ..................................................................................................22
Research Method ...........................................................................................................................23
Outline of Thesis ............................................................................................................................24
Chapter Two: Literature Review ...................................................................................................26
Search and Retrieval Strategies for Literature Review ..................................................................26
Synthesis of Literature ...................................................................................................................28
Summary Information of Research Literature .......................................................................... 29
The Experience of Mothering ................................................................................................... 30
Threats to Human Rights and Health ........................................................................................ 33
Social Influences on the Experience of Mothering Children with Albinism ............................ 38
Social constructions of gender/mothering. ........................................................................... 38
Poverty. ................................................................................................................................. 40
Access to education............................................................................................................... 41
Access to health and social services ..................................................................................... 45
Support for mothers and their children with albinism .......................................................... 48
Chapter Summary ..........................................................................................................................50
Chapter Three: Research Methods .................................................................................................52

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Research Design and Methodology ...............................................................................................52
Ethnography ...................................................................................................................................52
Africana Womanism ......................................................................................................................53
Trauma-Informed Research ...........................................................................................................55
Setting: Describing the Fieldwork .................................................................................................57
Describing Data Collection ............................................................................................................58
Recruitment and Sampling .............................................................................................................61
Description of the Sample ..............................................................................................................62
Data Analysis .................................................................................................................................66
Scientific Quality and Credibility ..................................................................................................68
Researcher Reflexivity and Positionality .................................................................................. 70
Limitations ................................................................................................................................ 72
Ethical Considerations ...................................................................................................................73
Chapter Summary ..........................................................................................................................76
Chapter Four: The Case Study .......................................................................................................78
The Case Study of Imara................................................................................................................78
Reflexive Notes ..............................................................................................................................91
Chapter Summary ..........................................................................................................................95
Chapter Five: Expansion of Key Storylines...................................................................................97
Social Context: Situating Mothers’ Experiences ...........................................................................97
Constructions of Gender: Africana Womanism ........................................................................ 98
Rural and Urban ...................................................................................................................... 100
Moving from Deprivation to Resourced ................................................................................. 102
Summary of Storyline 1: Context ........................................................................................... 104
Safety and Security: Carrying the Burden ...................................................................................105
Threats to Safety and Security ................................................................................................ 106
Sources of Protection .............................................................................................................. 109
Access to Justice ..................................................................................................................... 111
Summary of Storyline 2: Safety and Security......................................................................... 114
Role of Non-Governmental Organizations: Resourcing a Gap ...................................................114
NGOs as Resource .................................................................................................................. 115
Accessing NGOs ..................................................................................................................... 117

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Health and Social Services via NGOs .................................................................................... 119
Mamas’ Groups ....................................................................................................................... 120
Summary of Storyline 3: Role of Non-Governmental Organizations .................................... 124
Sponsorship and Mothering: Responding to Separation ..............................................................125
Government Holding Centres and the Beginning of Child Separation................................... 126
NGOs’ Response to Crisis ...................................................................................................... 130
Mothers’ View of Sponsorship ............................................................................................... 132
Parenting: Agency and Choice................................................................................................ 135
Summary of Storyline 4: Navigating Tensions of Sponsorship.............................................. 138
Mothering: Resilience through the Life Stages of Parenting .......................................................139
Tracing Mothering through the Life Stages ............................................................................ 140
Labor and delivery .............................................................................................................. 140
Postpartum and parenting in the early year......................................................................... 146
Parenting through the school years ..................................................................................... 152
Transition into young adulthood ......................................................................................... 158
Survival to Resilience: The Impact of Spiritual and Social Support ...................................... 163
Spiritual support .................................................................................................................. 164
Social support...................................................................................................................... 165
Sisterhood: Other women impacted by albinism ................................................................ 167
Summary of Storyline 5: Mothers’ Resilience through the Life Stages ................................. 170
Chapter Summary ........................................................................................................................171
Chapter Six: Theorizing the Mothering Experience ....................................................................173
Africana Womanism and Resilience ............................................................................................173
Africana Womanism ............................................................................................................... 174
Resilience ................................................................................................................................ 185
Mechanisms to Foster Resilience.................................................................................................194
Human Rights ......................................................................................................................... 194
Integrating the Analytic Contributions of the Study ............................................................... 200
Chapter Summary ........................................................................................................................201
Chapter Seven: Summary and Recommendations .......................................................................204
Summary of the Findings .............................................................................................................204
Conclusions of the Study .............................................................................................................206

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Recommendations ........................................................................................................................208
Policy ...................................................................................................................................... 208
Civil Society and Non-Governmental Organizations ............................................................. 209
Health and Social Services...................................................................................................... 211
Research .................................................................................................................................. 213
Leadership ............................................................................................................................... 214
Chapter Summary ........................................................................................................................215
References ....................................................................................................................................217
Appendix A: Literature Review Search Strategy.........................................................................233
Appendix B: PRISMA Diagram of Screening Methodology (Moher et al., 2009) .....................235
Appendix C: Sample of Literature Review Matrix ......................................................................236
Appendix D: NVIVO Literature Review Codebook ...................................................................246
Appendix E: Interview Guides (English and Kiswahili) .............................................................249
Appendix F: Confidentiality Agreement – Transcriptionist ........................................................254
Appendix G: Confidentiality Agreement – Interpreter ................................................................255
Appendix H: Fieldnote Guide ......................................................................................................256
Appendix I: Sample of Fieldnotes ...............................................................................................257
Appendix J: Study Data NVIVO Codebook ................................................................................262
Appendix K: Trinity Western University REB Certificates of Approval ....................................269
Appendix L: COSTECH Research Permit ...................................................................................271
Appendix M: NIMR Ethical Clearance Certificate .....................................................................272
Appendix N: Consent Form for Mothers .....................................................................................273
Appendix O: Consent Form for Key Informants .........................................................................280
Appendix P: Debrief Form for Mothers.......................................................................................287
Appendix Q: Debrief Form for Key Informants ..........................................................................289

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Figures
Figure 1. Photo of Ferry Terminal …………………………………………………………........25
Figure 2. Photo of Dar es Salaam Road …………………………………………………………51
Figure 3. Hudson-Weems’ (2019) Africana Womanism Figure ………………………………..55
Figure 4. Map of Tanzania ………………………………………………………………………58
Figure 5. Number of Children Represented with and without Albinism ………………………..63
Figure 6. Marital Status of Mothers Represented ……………………………………………….65
Figure 7. Ages of Children With and Without Albinism ………………………………………..66
Figure 8. Roasting Peanuts ……………………………………………………………………...77
Figure 9. Mothers Walking to Sharing Circle …………………………………………………...96
Figure 10. Labour and delivery room ………………………………………………………….146
Figure 11. Sharing circle beneath a tree ………………………………………………………..170
Figure 12. Walking to a sharing circle ………………………………………………………....172
Figure 13. Social ecological resilience figure ………………………………………………….189
Figure 14. Taking a break during a sharing circle ……………………………………………..203
Figure 15. Outdoor kitchen ………………………………………………………………….....216

Table
Table 1. Demographics of participants …………………………………………………….........64

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Abstract
Little is understood about the everyday lives of mothers of children with albinism in subSaharan Africa, specifically Tanzania. This region has a harrowing history of discrimination and
violent attacks against persons with albinism, largely rooted in cultural/spiritual beliefs and
practices, and perpetuated by layers of myth about albinism. A focused critical ethnographic
study, through the lens of Hudson-Weems’ (2019) Africana Womanism, explored the
experiences of mothers of children with albinism in Tanzania, addressed the gendered nature of
this condition, and considered the human rights and resilience of the mothers. One participant’s
story illuminated human rights and resilience from a mother’s standpoint, which was the
backdrop for the presentation of findings that included stories of other mothers with albinism and
the perspectives of key stakeholders. These findings highlight the social ecological nature of
resilience for these mothers. Recommendations focus on policy, advocacy, and research related
to health and social services and education.

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Acknowledgements
This has been a humbling journey. Sitting face-to-face with women impacted by albinism
boldly declaring their stories—the grief, the triumph, the anger, the hope, the knowing—changed
my idea of the role academic research can play in the broader story of humanity. This study does
not exist because of me and my work: It exists because of the women impacted by albinism who,
desiring to see change at all levels, agreed to share their experiences with me. This research is
dedicated to these women: May this work be part of the loudspeaker amplifying your powerful
voices.
Thank you does not capture the depth of my gratitude to the circle of women that have
championed this project alongside me. I entered this program of research with the invitation and
generosity of my thesis supervisors, Drs. Sheryl Reimer-Kirkham and Barbara Astle. You have
both championed my efforts with this research from the beginning and your guidance, feedback,
and insights helped shape the direction of this thesis in meaningful ways. Dr. Reimer-Kirkham,
thank you for holding these stories with me and helping me navigate the academic journey while
honoring the sacredness of the stories we were entrusted with. The grace and humility by which
you conduct research is truly extraordinary. Ms. Ikponwosa Ero, your direction, support, and
expertise throughout this project was invaluable. Ms. Jane Waithera, your joy, passion, and
unequivocal sense of equity fueled the fieldwork. Learning from women like yourselves and
having the opportunity to work alongside you has been an honour and absolute privilege.
Without the constant love, support, and encouragement from my family I would never
have started this journey. Mom, Dad, Lela, thank you for believing in me and cheering me on
always: I love you. Throughout this work, I have reflected on the journeys of the women in my

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family that paved the way. My late grandmother, Mary Emma Hill Strobell, who as a geologist
for the USGS in the 1950s to 70s broke several glass ceilings in her own profession. Grandma,
thank you for instilling in me a deep curiosity about the world, a sense that I could achieve
anything I set my mind and heart to, and to not fear different ideas or belief systems but to see
the humanity inside of everyone. And my late Mima, D’Metra Maddox, your tenacity, feisty
spirit, and perseverance in the face of hardship reminds me to keep going, to keep challenging
myself, and to acknowledge the many unearned privileges that I walk in. I am proud to identify
with these strong women and to carry their spirits with me.
This did not begin or finish without the unwavering support of my community of
friends—you know who you are and I owe you big time! Rose, the countless cups of tea, the
edits, the brainstorming: Thank you. Sue and Jen, your passion for women surviving on the
margins and the invitation to join your work those years ago provided an outlet to cultivate the
passion for justice and equity that was stirring, but lacked direction. Thank you for your deep
love and acceptance, for your willingness to look at the ugly stuff. Azizam, you are the icing on
the cake: Your unwavering support and enthusiasm pushed me to the finish line.
To everyone at our partner NGO that supported this project: Thank you for your support,
both practically and personally. This would not have been successful without you.

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Chapter One: Introduction and Background
In recent years, media coverage, policy documents, and academic literature have exposed
the troubling levels of stigma, discrimination, threats to physical and emotional security, as well
as various threats to health faced by persons with albinism, with most of these reports focused on
sub-Saharan Africa (Reimer-Kirkham, Astle, Ero, Panchuk, & Dixon, 2019; United Nations
General Assembly [UNGA], 2016a). Many of the stigmas and discrimination experienced by
persons with albinism in areas of Africa are related to various spiritual and/or cultural beliefs and
practices that are rooted in layers of myth and mystery drawing on African ontology (Baker,
Lund, Nyathi, & Taylor, 2010; Imafidon, 2017; Reimer-Kirkham et al., 2019). Such beliefs can
deem persons with albinism as super or subhuman. In conjunction, a gap exists in culturally
relevant knowledge dissemination regarding the genetic causes of the condition (Baker et al.,
2010). Even though the genetics of the disease are such that both parents are recessive carriers,
many of the spiritual/cultural beliefs about the causes of albinism are gendered (e.g., conception
during menstruation, affair with a white man), such that mothers are disproportionately blamed
and otherwise put at risk for additional harm (e.g., sexual violence) on account of these beliefs
(Brocco, 2016; Franklin, Lund, Bradbury-Jones, & Taylor, 2018; Reimer-Kirkham et al., 2019).
Recent media coverage concerning mutilation, killings, and trafficking of body parts of persons
with albinism for charms and profit in Tanzania, particularly where it concerns affected children,
have brought such stories to an international level (Brocco, 2015; Human Rights Watch, 2017;
Ntetema, 2008; Reimer-Kirkham et al., 2019).
Of particular concern is the lack of research related specifically to the experiences of
women and girls affected by albinism: both mothers of children with albinism as well as women

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and girls with albinism themselves (UNGA, 2019a). Research on the experiences of persons with
albinism in Africa has gained ground since the mid-2000s, adding to the existing literature on
albinism as a genetic condition (Estrada-Hernandez & Harper, 2007; Reimer-Kirkham et al.,
2019). However, little of this has focused specifically on mothering. And yet, because of the
gendered nature of beliefs about albinism, the level of stigma and violence faced by persons with
albinism, and the critical role of mothers in protecting their children with albinism,
understanding the experiences of mothers impacted is of paramount importance. Thus, the aim of
my research is to explore such experiences. I was invited by the UN Independent Expert on the
enjoyment of human rights by persons with albinism, Ikponwosa Ero, and NGO-1 (to ensure
confidentiality, the NGO will not be identified by name) to conduct this research. I connected
with women who have children with albinism who access programs of two different NGOs in
Dar es Salaam and Mwanza, Tanzania. My hope was that through conducting critical
ethnographic research, women impacted can add their experiences of mothering children with
albinism to the literature in an effort to further the protection and promotion of the human rights
of persons with albinism and provide necessary information related to resources, policy, and
advocacy that can extend beyond the Tanzanian context.
Throughout my undergraduate studies and well into my career as a community health
nurse in Northern Canada, my passion for human rights, particularly as experienced by women
and girls on a global scale, has endured. My interest in pursuing this passion as an area of study
began in 2017 when I joined a broader Social Sciences Health Research of Canada-funded
(SSHRC) study on the implications of spiritual/cultural practices on the enjoyment of human
rights by persons with albinism as a research assistant. This study aimed to collaboratively set a

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research agenda to address the gross human rights violations that persons with albinism
experience in their daily lives in places like Tanzania (Reimer-Kirkham et al., 2019). By the time
I commenced fieldwork for this thesis, our team secured additional funding to further explore the
experiences of mothers impacted by albinism (including mothers with albinism themselves). As
a result, this current study (my thesis) became the pilot project in Tanzania, which is being
followed with additional fieldwork in Tanzania, South Africa, and Ghana. By exploring the
specific experience of women affected by albinism, the findings from this study may assist
policy-makers, advocates, and activists to be better positioned to respond appropriately and
effectively to their hardship.
Background
In the following section, I describe how key concepts of this research coalesce,
highlighting the intersectional nature of albinism within the Tanzanian context: albinism; human
rights and albinism; and mothering and albinism.
Albinism
Oculocutaneous Albinism (OCA) is a genetic condition that causes hypopigmentation of
the skin, eyes, and hair due to an impairment in the synthesis and transport of melanin by
melanocytes (Cruz-Inigo, Ladizinski, & Sethi, 2011). While there are two main types of
albinism, OCA Types 1–7 and Ocular Albinism, OCA Type 2 (OCA 2) is most prevalent in SubSaharan Africa (Kamaraj & Purohit, 2014; Lund, 2001, 2005). There are other rarer forms of
albinism including Hermansky Pudlak Syndrome (HPS) and Chediak Higashi Syndrome. Both of
these rare forms have associated severe systemic problems. OCA 2 is most common in Africa
and represents about 20–30 % of all albinism cases (Kamaraj & Purohit, 2014). Persons with

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OCA 2 have pale, white skin, light hair, and light brown or blue eyes which stand in stark
contrast to the darker features and melanated skin that is “normal” in sub-Saharan Africa (Lund
2001, p. 1). OCA 2 is a recessive X-linked genetic condition (Kamaraj & Purohit, 2014), in
which both parents must carry “one mutant (non-working) form of the gene for OCA 2” in order
to conceive a child with albinism (Lund, 2001, p. 1). Carrier parents, who most often do not have
OCA 2 themselves, have a 1:4 chance per pregnancy of conceiving a child with albinism (Lund,
2001). Children born with OCA 2 have two mutant copies of the gene and are, therefore, unable
to produce pigment (a result of melanin) (Lund, 2001).
Melanin, which gives skin its colour, also protects the skin from harmful effects caused
by the sun’s ultraviolet radiation. Thus people with OCA 2 are at high risk for severe forms of
skin cancer, particularly in the sub-Saharan African climate (Cruz-Inigo et al., 2011). Visual
impairments, including nystagmus (involuntary movement of the eyes), poor visual acuity, and
photophobia affect people with OCA 2, often to an acute degree (Cruz-Inigo et al., 2011). While
people from all over the world are affected by OCA, parts of sub-Saharan Africa experience a
much higher prevalence, with estimates in Tanzania of 1:1,429 (Cruz-Inigo et al., 2011) versus
the estimated 1:20,000 in most populations globally or 1:37,000 in the United States of America
(Cruz-Inigo et al., 2011; Lund, 2001). In addition to these health concerns, persons with albinism
experience stigma, discrimination, and threats to their physical safety (Brilliant, 2015; Lund,
2001; Reimer-Kirkham et al., 2019). Such threats are based on their skin colour, visual
impairment, and various spiritual/cultural beliefs and practices related to the causes of the
condition itself that result in social isolation and lack of access to health and social services

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(including simple preventative measures such as sunscreen and skin cancer screening) (ReimerKirkham et al., 2019).
Human Rights and Albinism
NGOs have been working locally and globally alongside persons with albinism to
promote their inclusion within society and ensure access to key resources. These include: Under
the Same Sun (UTSS), Standing Voice (SV), and Tanzanian Albinism Society (TAS) in
Tanzania; Association for Persons with Albinism–Malawi (APAM); Albinism Society of South
Africa (ASSA); and National Organization for Albinism and Hypopigmentation (NOAH),
predominately in North America. Other international organizations, such as the United Nations
(UN) and the World Health Organization (WHO), however, have been slower to initiate unified
and formalized responses related to the concerns faced by persons with albinism. More recently,
in 2015, the UN appointed Ikponwosa Ero, herself a person with albinism, as the first UN
Independent Expert on the enjoyment of human rights by persons with albinism. While not
regularly discussed in academic discourse as “human rights violations,” Ero’s appointment to
such a post and the mandate that falls under her portfolio have certainly elevated the cause of
persons with albinism to such a level (Reimer-Kirkham et al., 2019; UNGA, 2016a). There
continue, however, to be harrowing reports of persons with albinism who are being murdered or
mutilated for their body parts. While there is much to be addressed on this important human
rights concern, for the purpose of this study, the focus remained on mothers of children with
albinism and their experiences of navigating this in terms of their own experiences as well as
how having a child with albinism impacted their parenting/child-rearing.

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Increasingly tied to human rights discourse are the UN’s Sustainable Development Goals
(SDGs). In 2015, the UN introduced these global goals espousing the importance that all persons
be acknowledged, building upon the framework of the Millennium Development Goals (MDGs),
which focused on more specific populations (UN, 2015). The SDGs are broader in their scope,
addressing social, economic, and environmental dimensions. Also embedded within the SDGs is
the “pledge that no one will be left behind” (p. 5). The framework of the SDGs has been utilized
by Ero in her mandate along with the principle of leaving no one behind serving as a key
cornerstone:
The measures can also be implemented by integrating them into several existing, broader
national frameworks, including action plans on human rights, policies on the rights of
persons with disabilities and frameworks to combat racial discrimination, on access to
health, on the rights of women and children and on access to justice services and victim
support services. It is important to ensure, however, that the measures integrated in
broader frameworks explicitly address the specificities of the challenges faced by persons
with albinism. It is very important that the issue does not become “lost” among others, as
the ignorance of the specificities of the rights and needs of persons with albinism has
permitted the development of myths that in turn have contributed to the attacks. Indeed,
the 2030 Agenda for Sustainable Development alludes to beginning all efforts with those
who have been left furthest behind. (UNGA, 2017a, para 99)
While the SDGs provide a broadened scope, when compared to the MDGs, number 5 explicitly
addresses the goal to “achieve gender equality and empower all women and girls” (UN, 2015, p.
18). This goal directly reflects this rights-based principle of ensuring no one is left behind

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(WHO, 2017). As a result, the focus of this study supports and provides the impetuous for the
study of gender implications for mothers of children with albinism and their experiences.
Mothering and Albinism
Women and girls remain particularly vulnerable to human rights violations as a result of
the social constructs of gender that continue to enable multiple and intersecting forms of stigma,
discrimination, violence, and inequity (Hagues, 2017; UNGA, 2013, 2016a, 2019a). A disability
like albinism adds yet another layer to the intersecting structural vulnerabilities that many
African women already navigate (Hagues, 2017; Neille & Penn, 2017). As a result, gendered
narratives persist within African mythologies and beliefs, and women and girls with albinism are
at increased risk of experiencing gender-based violence and sexual assault (Adeyanju, Dipo, &
Tayie, 2015; Baker et al., 2010). To this point, Baker et al. (2010) quote a man with albinism in
Zimbabwe:
To be an albino is a terrible thing, but to be a girl albino is the worst of all. You know
that the AIDS pandemic, they say the cure is to sleep with a virgin, but if you sleep with a
virgin who is albino then even better. There are many rapes… (p. 176)
Neille and Penn (2017) highlighted the intersectionality between disability, violence, and
poverty, and affirmed the postulation that women and girls with a disability like albinism are at
increased risk for such violence, asserting that “women with disabilities are doubly exposed to
sexual violence as a result of gender inequality as well as by nature of their disability” (p. 2854).
In their study addressing the social determinants of health (SDoH) and inequity in Tanzania,
Mtenga, Masanja, and Mamdani (2016) emphasized that gender inequities persist “because of
differences in access to and control over resources in decision-making powers, as well as the

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roles and responsibilities that society assigns to them” (p. 2). Hagues (2017) highlighted “a
‘triple heritage’ ” that continues to privilege the treatment of men within sub-Saharan Africa that
includes the intersection between Western/Christian colonial ideologies, Islamic ideologies, and
practices already embedded within traditional African beliefs (p. 110). Exploration into how such
social constructs of gender in a given cultural context further marginalize women and girls with
albinism, as well as mothers of children with albinism is needed to ensure effective strategies in
the protection and promotion of their human rights.
In terms of roles and responsibilities historically held by women within a Tanzanian
context, marriage and family, particularly in rural areas, are key to a woman’s social acceptance,
support, and welfare (Franklin et al., 2018; Hagues, 2017). As a result of the myths and spiritual
beliefs surrounding the condition, both women with albinism and mothers of children with
albinism may struggle to find/keep both a partner and a partner’s family who are accepting of her
(Franklin et al., 2018). As explored by Brocco (2015), the most important aspect of a woman’s
dowry (regardless of whether she herself is a person with albinism) in Tanzania is that she
provides her husband and his family with “healthy (and black) children” (p. 1148). Women who
deliver babies with albinism are believed to be cursed or to have committed a misdeed (e.g.,
infidelity, conception during menstruation, touching a person with albinism while pregnant) and
thus bear the blame for their child having the condition (Adeyanju et al., 2015; Baker et al.,
2010; Brocco, 2015; Cruz-Inigo et al., 2011). These women, subsequently, often face rejection
by their partners, their partners’ families, and their communities, exposing women and their
children with albinism to the effects of ostracism and poverty (Franklin et al., 2018; UNGA,
2016a, 2016b, 2019a). The subsequent intersecting drivers of inequities affecting the well-being

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of women and their children with albinism are holistic, including access to safety, shelter,
education, healthcare services, food security, economic security, and a sense of belonging within
a broader community. As an example, Franklin et al. (2018) highlighted the very real safety
concerns of children with albinism walking alone as a barrier to accessing education and other
services. Families expressed the necessity of escorting their children with albinism to prevent
violent (physical and psychological) attacks (Franklin et al., 2018). Understanding the added
challenges of managing such safety measures as a single mother of a child with albinism is key
in terms of addressing the gendered nature of mothering a child with a disability like albinism.
The combination of these aforementioned factors and the lack of research related
specifically to the experience of mothers of children with albinism highlights the need for further
rigorous study. This is affirmed by Franklin et al.’s (2018) recent study that called for further
“research into understanding the lives of persons with albinism, especially from their perspective
and within a social-relational model of disability” (p. 7). This study addresses this gap by
examining the mothering experience of mothers of children with albinism in Tanzania, using
Hudson-Weems’ (2019) framework of Africana Womanism.
Significance of Findings and Implications for Nursing
Madison (2005) contends “that critical ethnography is always a meeting of multiple sides
in an encounter with and among the Other(s), one in which there is negotiation and dialogue
toward substantial and viable meanings that make a difference in the Other’s world” (p. 9). This
focused critical ethnographic study continued, in some places, and started, in others, the
conversation regarding the lived experience of mothers of children with albinism within a
gendered and at times violent context in which they must confront regular concerns regarding the

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safety, security, and long-term societal inclusion of their children with albinism. The mothers’
voices that this study centres on are the very voices with the personal knowledge, experience,
and perspectives necessary to further ground the conversation regarding the enjoyment of human
rights by persons with albinism, aligning with Ero’s UN mandate.
As this study is embedded within the broader project on mothering and albinism,
knowledge exchange has been facilitated through existing routes of communication with our
partners in the field as well as key stakeholders to whom we are connected by proxy (ReimerKirkham et al., 2019). Knowledge exchange incites a non-linear (Davies, Powell, & Nutley,
2016) mutual sharing and learning that acknowledges insights and wisdom on both sides—
researcher and researched—exploring methods and approaches to disseminating research
findings to various outlets for maximum impact. Davies et al. (2016) suggest that knowledge
exchange, as opposed to terminology such as “knowledge translation” or “knowledge
mobilization,” “embod[ies] greater acknowledgement of non-linearity, multi-way knowledge
interaction, and system complexity” (p. 280). This approach to mobilizing research findings fits
well within our broader project comprised of multi-sectoral, multi-disciplinary partnerships,
allowing for a fluidity of knowledge exchange and enactment.
This study adds several elements to existing literature, namely the themes of: parenting
concerns and strategies; the intersectional influences on the experience of mothering children
with albinism; access to health and social services as well as health-related knowledge; and how
threats to human rights in their everyday lives influence their health and well-being. During a
time in history where the threats to the human rights of persons with albinism have gained
international attention, particularly in sub-Saharan Africa, this study is timely.

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As global leaders in healthcare, nurses must continue to position themselves within the
human rights agenda—regardless of context or location. Not only does the Canadian Nurses
Association (CNA) (2017) Code of Ethics provide sufficient support for such global health
involvement, the International Council of Nurses (ICN) (2011) explicitly supports the UN
Declaration of Human Rights and states that “nurses have an obligation to safeguard, respect and
actively promote people’s health rights at all times and in all places” (p. 2). Further, the ICN
(2018) theme for the year 2018 was “Nurses: A Voice to Lead—Health is a Human Right” (para.
1). By elucidating the lived experience of mothers of children with albinism, this study can equip
nurses at local, national, and international levels to promote access to health and social services,
health-related knowledge, and the protection and enjoyment of the human rights of persons with
albinism via policy, frontline practice, education and research.
Definition of Terms
This section clarifies the terms used to explore the experiences of mothers impacted by
albinism throughout this study. These terms include “albinism,” “mothering,” “health,” “human
rights,” and “social constructions of gender.”
Albinism
Throughout this study, albinism refers to Oculocutaneous Albinism (OCA), which is a
recessive genetic condition in which the synthesis and transport of melanin by melanocytes is
affected, resulting in hypopigmentation of the skin, eyes, and hair (Cruz-Inigo et al., 2011).
People with OCA are at increased risk for severe forms of skin cancer as well as vision
impairment, photophobia, and nystagmus (involuntary movement of the eyes) (Cruz-Inigo et al.,
2011; Lund, 2001). Beyond the physical implications of this genetic condition, this study

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acknowledges the human rights violations experienced by persons with this condition due to
inaccurate beliefs regarding its cause (Reimer-Kirkham et al., 2019).
Mothering
Mothering includes both biological mothers of children with albinism as well as women
who are primary caregivers of children with albinism (Oxford English Dictionary, 2018). It is
recognized that “collective child-rearing” is common within African contexts, where
grandmothers, other female relatives, and older siblings are also involved in child-rearing
(Muthuzkrishna & Ebrahim, 2014, p. 370).
Health
The definition of health for this study aligns with the WHO’s (2006) constitution which
states the following:
Health is a state of complete physical, mental and social well-being and not
merely the absence of disease or infirmity. The enjoyment of the highest attainable
standard of health is one of the fundamental rights of every human being without
distinction of race, religion, political belief, economic or social condition. (para. 1)
Human Rights
Human rights, as defined by the United Nations (2020), are the intrinsic rights of every
human regardless of “nationality, place of residence, sex, national or ethnic origin, colour,
religion, language, or any other status” (para. 1). Human rights ensure the “right to life, liberty,
and security of person” (United Nations, 1948, p. 2). This study acknowledges that the threats to
security, health, and well-being of persons with albinism are direct violations of their human
rights as defined under international law.

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Social Constructions of Gender
Gender is explored as an experience embedded within social, political, economic, and
cultural discourses—a construct that has direct implications on one’s security, health, position in
society, and access to resources (Lorber, 1991). Lorber (1991) described gender as “constantly
created and re-created out of human interaction, out of social life, and is the texture and order of
that social life” (p. 112). Gender affects expectations of mothers versus fathers in terms of
parenting, and, as specifically explored by Muthukrishna and Ebrahim (2014), mothering is
socially constructed in that “discourses create expectancies about relationships, and influence
thoughts and behaviours that shape the nature of the interactions” (p. 370). Further, it has been
noted that girls with albinism experience increased human rights violations, particularly in terms
of safety, security, and education (Franklin, et al., 2018).
Purpose and Research Objectives
The purpose of this focused critical ethnographic study was to explore the social
influences on the experience of mothering children with albinism in Tanzania. The objectives
were:
1. To describe the primary concerns and parenting strategies employed by mothers in their
day-to-day care of children with albinism in Tanzania.
2. To examine how mothers and their children in this particular context access health and
social services, including health-related knowledge.
3. To analyze how threats to human rights in their everyday lives (e.g., stigma,
discrimination, violence) influence their mothering and health.

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4. To explore the influencing factors of social support, poverty, and sociocultural views on
the experience of mothering in this context.
Research Method
As noted above, this ethnographic study is embedded within a broader, four-year study
on mothering and albinism in Tanzania, South Africa, and Ghana. I collected data in Tanzania
over two fieldwork visits, an initial six weeks (March–May 2019) followed by a four-week
(October–November 2019) trip six months later. Within this time frame, I interviewed a total of
62 participants alongside a cultural liaison, J. Waithera. We interviewed 26 mothers (both
women who have children with albinism and mothers with albinism themselves) and 36 key
informants. My thesis draws on the entirety of my time in the field while focusing specifically on
mothers with children with albinism and a smaller sample size for analysis. Data was collected
employing methods of critical ethnography (Carspecken, 1996; Madison, 2015), including
extensive reflective fieldnotes; participant observation; semi-structured interviews, both one-onone and in sharing circles; and extensive debrief conversations with the cultural liaison, local
research partners, and my thesis supervisory committee members, Drs. Reimer-Kirkham and
Astle. All interviews were audio-recorded and transcribed. I used QSR International’s NVivoTM
12 software to support data analysis. Throughout the research process and reflected within this
thesis, I sought to remain cognizant of and acknowledge my own positionality as researcher (i.e.,
outsider, white, North American, privileged) in my approach to this method. However, blind
spots remained and hindsight is undoubtedly 20/20 (Simandan, 2019).

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Outline of Thesis
This thesis is organized into seven chapters. In Chapter One, I introduced the relevance
and timeliness of including the gendered nature of albinism more specifically into current
scholarship. I presented the definitions, purpose, objectives, and research methods that guided
the study. Chapter Two provides a review of related scholarly literature that supports the aim of
this research and underscores the necessity for this study. The research methods are presented in
Chapter Three and include sampling strategies, data collection, data analysis, considerations for
scientific rigour, ethical considerations for conducting international research, and limitations.
Chapters Four and Five, collectively, present the research findings. Chapter Four presents a
narrative case study of one of the mothers that embodies a number of key experiences affirmed
by several other mothers in this study. Her story is followed by a reflexive section from my
position as researcher. Drawing from this case study, Chapter Five weaves together the key
storylines and subplots that serve to illustrate the experiences of mothers who have children with
albinism in Tanzania. Drawing on the theoretical lens of Hudson-Weems’ (2019) Africana
Womanism, deeper analysis of the data was conducted. Chapter Six presents a discussion of key
study findings, focusing on resilience and human rights through the lens of Hudson–Weems’
(2019) Africana Womanism. Finally, Chapter Seven concludes the study, presenting
recommendations for engaging the voices of mothers impacted by albinism to improve the lives
of women and their children affected. Recommendations are offered for policy, NGOs/CSOs,
health and social services, education, research, and leadership.

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Figure 1. Approaching a ferry terminal in Mwanza, Tanzania, en route to another fieldwork site.

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Chapter Two: Literature Review
This chapter outlines the review of current literature related to mothering in the context of
albinism. I will begin by detailing my search strategy, including search terms, databases,
forward/backward citation searches, inclusion/exclusion criteria, and extraction questions used to
obtain relevant data. Based on research objectives, I will discuss areas that the research literature
addresses related to the experience of mothering, broad support provided to mothers, access to
health and social services, influences on the experience of mothering children with albinism, and,
lastly, threats to human rights and health as experienced by women and their children.
Search and Retrieval Strategies for Literature Review
In consultation with a research librarian, I developed a search strategy for the following
databases: Library One Search, CINAHL, CINAHL Subject Headings, MEDLINE, PsycInfo,
PsycInfo Thesaurus, Academic Search Complete, Academic Search Complete, Subject
Headings, and EMBASE. Based on the purpose and research objectives outlined above, several
keywords relevant to the themes were identified and joined using Boolean AND or OR strings
(see Appendix A: Literature Review Search Strategy): “Africa* OR Tanzania* OR Malawi* OR
Zimbabw* OR Sub-Sahara*”; “child* OR infant OR baby OR babies OR adolescen* OR youth”;
“albinism OR albino”; and “mother* OR parent* OR rais*.” During initial trials of the search
strings, I discovered that by limiting the location to Tanzania, the results were too restricted. By
broadening the location to include specific affected neighboring countries as well as the broader
region and continent, I was able to capture more applicable and relevant results. Following each
search, I exported all results from each database into EndnoteTM, a reference management
software, using RIS file formats. A total of 270 articles resulted, of which 60 were duplicates.

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This resulted in a total of 210 articles to screen using inclusion and exclusion criteria. Articles
were included if they met the following criteria: peer reviewed journal articles, Masters’ theses,
or PhD dissertations; in English or French; substantive discussion of albinism; and explicit
discussion of the mothering or parenting concept. Articles were excluded if they were not peer
reviewed, not in English or French, did not mention albinism, mothering or parenting, and if they
were a Bachelor’s level thesis. Following this screening process, I selected 22 relevant articles
that met all inclusion criteria.
The databases available for my search contain citations primarily from the Global North1
versus the Global South. Therefore, to ensure I was capturing existing data on a global level, I
performed an Advanced Google Search in addition to the databases used. As several thousand
hits resulted, I scanned only the first four pages of the results list. This process identified 5
articles, 2 of which were duplicates from the database search, resulting in a total of 3 articles
added for inclusion. Several chapters related to my topic were also included (these chapters are
part of the broader program of research in which this study is embedded, as mentioned in
Chapter One).
To further broaden my search and avoid overlooking valuable literature, I used
backward/forward citation searches of the selected articles. I was able to identify another 8
articles relevant for this study that met all inclusion criteria. In total, 33 articles were included in
this literature review (see Appendix B for Literature Review PRISMA [Moher et al., 2009]). In

1

The classifications of global South and global North are imperfect and come with exceptions (e.g.,
Australia and Namibia as high income and high-middle income respectively). However, for the
purposes of the present report, they are useful in highlighting those regions where structural factors (lower
resources) and higher incidences of albinism converge to create contexts of higher risk of human rights violations.

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addition, I drew on Ero’s UN reports as the UN Independent Expert on the enjoyment of human
rights by persons with albinism. Notably, Kromberg, Zwane, and Jenkins’ (1987) article entitled
“The Response of Black Mothers to the Birth of an Albino Infant” is the only research article
explicitly addressing the particular topic of mothers and mothering in relation to albinism,
addressing the issue in South Africa.
After employing principles of Garrard’s (2017) matrix method to perform a thorough
literature review (see Appendix C for sample of literature review matrix), I used QSR
International’s NVivoTM12 qualitative data analysis software to analyze the literature for relevant
data. After uploading each article to the software, all articles were read and coded using various
extraction questions (See Appendix D for the literature review codebook). These codes sought to
gather data that articulated the following: the everyday lives and experiences of mothers of
children with albinism; the support that they receive from family, their community, the
government, and NGOs/CSOs; what access to health and social services looks like at the
community, government, and NGO/CSO levels, as well as their access to health-related
knowledge and education; the social influences on the experiences of mothering children with
albinism, such as the SDoH and social constructions of womanhood; and, finally, threats to
human rights and health, including myth and stigma, discrimination, gender-specific threats, and
violence.
Synthesis of Literature
The following is a comprehensive discussion of current literature available on this topic
which also articulates gaps in the current body of research that point to the necessity of this
current research study. I begin by providing an overview of the literature included, as to

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discipline of lead researchers, authors’ country of origin, research locales addressed, and
research methods used in their studies. Following a summary of the articles included in this
literature review, I detail how, together, they provide a review of understandings contained in
current research literature as to the experience of mothering, threats to human rights and health,
and the social influences on the experience of mothering children with albinism.
Summary Information of Research Literature
A total of 33 sources met the criteria for this study. Methods were distributed as follows:
qualitative (n= 13), quantitative (n = 2), mixed methods (n = 3), and systematic reviews and
content analysis (n = 3). In addition, several selected sources use methods such as policy
analyses, legal analyses, philosophic inquiry, and other non-empirical analyses (n = 12). Studies
represented health (nursing, medicine, and public health), social sciences (anthropology,
psychology, disability studies, cultural studies, and education), arts and humanities (critical arts,
literature, and philosophy), and law. The earliest article was published in 1987, with the latest
published in 2019. There were 24 sources published in the last 10 years. Most of the studies, 29,
occurred in Africa (e.g., in Tanzania, Uganda, South Africa, Malawi, and Zimbabwe) with the
exception of three which were conducted in the United States of America and Australia, and two
of which had a global reach. While 29 sources were focused on or conducted in African
countries, only 12 articles included a lead author from an African country. Similar results
concerning Global South and Global North authoring were reported by Reimer-Kirkham et al.
(2019) in their scoping review on albinism.

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The Experience of Mothering
While discussion exists in the research literature around the struggles that families
impacted by albinism face, little discussion is focused on the everyday lives of mothers of
children with albinism. It is fascinating that what has been shown in the research literature to
date are quite repetitive snippets of a mother’s experience embedded within a growing volume of
research literature exploring the broad, troubling albinism narrative in sub-Saharan Africa. Much
less research addresses the experience of mothering in any kind of depth. Rather than a critique,
this illustrates both the urgency of research and advocacy work to improve the lives of persons
with albinism as well as the ways in which such crises invariably silence the experiences of those
in close proximity. In order to begin to piece together what is currently understood in the
literature regarding their everyday lives, I coded the research literature for discussion related to
primary concerns and parenting struggles and strategies. Along with these concepts, I examined
the research literature for the experience of mothering and albinism with the following codes:
experience of women with albinism; experience of girls with albinism; experience of pregnancy
of women with albinism; delivery of a child with albinism; postpartum period of a mother who
has a baby with albinism; and partner or spousal support following delivery of a child with
albinism. In the sections that follow, I summarize these themes.
A common thread identified throughout much of the research literature is the struggle
that families with children who have albinism face in terms of health, safety and security,
education, acceptance, and employment. Parents of children in sub-Saharan Africa with albinism
often must weigh these concerns within the context of poverty, lack of access to key services,
and lack of support and resources from their families, communities and governments alike.

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Kromberg et al. (1987), in their germinal work in South Africa, described the response of black
mothers to their babies born with albinism. Acknowledging the various beliefs and myths
surrounding albinism in various African regions, Kromberg et al. (1987) hypothesized that “the
birth of an albino infant might well be a traumatic event for the mother, provoking emotional
confusion and interfering with the normal development of maternal-infant attachment” (p. 911).
The authors found that, in comparison to a control group of mothers whose infants were
unaffected by albinism, mothers of babies with albinism initially reported greater feelings of
depression, worry around the unhappiness of the infants’ fathers, fears of rejection by their
community and family, and displeasure in the appearance of their infant. Further, Kromberg et
al. (1987) observed that mothers of infants with albinism showed less affection and connection
(e.g., holding their infant close, stroking them, singing to them, kissing them) in initial
observations than the control group. Authors also noted that significantly fewer mothers with
affected infants “want(ed) to hold or breast-feed their infants shortly after birth” (p. 912). These
observations seem to highlight the shock, even trauma, that women who deliver babies with
albinism experience in the initial postpartum period, a finding that more recent studies have
confirmed (Aquaron et al., 2009; Braathen & Ingstad, 2006; Duri & Makama, 2018; EstradaHernandez et al., 2007; Kromberg, 2017; Lynch et al., 2014; Morris, Glass, Wessels, &
Kromberg, 2015). Essential to furthering this research, however, is the finding by Kromberg et
al. (1987) that these mothers show increasing connection to their infants over time—suggesting
that the bond is potentially more gradual as the shock of their infant’s condition wanes and, as
the authors suggest, the realization that their child’s cognitive and physical development is
unencumbered by their lack of pigmentation and affected visual acuity. Though not without

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limitations, this study was the first and remains the only academic study dedicated to the
experience of mothers who have children with albinism. It is this study, thirty-two years ago, that
I am now building upon.
Kiishweko (2016) discussed the experience of women with children who have disabilities
more broadly, including albinism, within patriarchal societies, asserting that women are
disproportionately held responsible for the cause of their child’s condition as well as for their
care. Patriarchy and patrilineality were also noted by Brocco (2016), who articulated that while
mothers were found to be more accepting and loving of their children with albinism, “the
ultimate decision of whether or not to reject them lays in many cases in the hands of the father”
(p. 234). Other researchers have found that many fathers of such children abandon their families,
rejecting their partner/wife and child with albinism (Aquaron et al., 2009; Baker, Lund, Nyathi,
& Taylor, 2010; Braathen & Ingstad, 2006; Brocco, 2016; Butler-Jones, 2013; Duri & Makama,
2018; Estrada-Hernandez, 2007; Kiishweko, 2016; Kromberg et al., 1987; Kromberg, 2017;
Masanja & Magembe, 2015; Mulemi & Ndolo, 2014; Taylor, Bradbury-Jones, & Lund, 2019).
According to Kiishweko (2016), a National Survey on Disability in Tanzania released in 2008, in
which albinism was included, noted that “nine percent of children with disability under the age
of 18 years lived without their fathers, as compared to 1.8 percent who were living without
mothers” (p. 121). Duri and Makama (2018) cited a staggering 90% of children with albinism
raised by single mothers in East Africa. Kiishweko (2016) further exposed systemic barriers that
these mothers face due to “misogynistic structures which give women limited education and
formal employment prospects” to begin with (p. 122). Such structures have a compounding

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impact on mothers of children with disabilities that further deepens the intersectional experience
of such women.
Faced with pressure by their partners, in-laws, community members, or midwives to
abandon or even kill their baby born with albinism, women suffer the very present realities that
generations of myth and stigma have created in understanding the humanity of the person with
albinism (Duri & Makama, 2018; Lynch et al., 2014; Masanja & Magembe, 2015). Mothers who
deliver babies with albinism, as mentioned above, are frequently left to parent alone, abandoned
by the child’s father, their in-laws, and their community (Braathen & Ingstad, 2006; Brocco,
2016; Butler-Jones, 2013; Duri & Makama, 2018; Kiishweko, 2016; Lynch et al., 2014; Masanja
& Magembe, 2015; Taylor et al., 2019). In part, due to a woman’s already inferior position
within society, the risk to livelihood is acute (e.g., lack of education that would enable a woman
to obtain gainful employment, life as a single mother of a child with a disability) (Duri &
Makama, 2018; Kiishweko, 2016; UNGA, 2019a). In addition, there exist grave threats to their
human rights, both to mothers and their children. The following section describes the current
state of knowledge on threats to the human rights of mothers and their children with albinism, as
well as the significance of introducing a human rights lens to research on albinism.
Threats to Human Rights and Health
To determine the current state of knowledge in the research literature on threats to the
human rights of mothers and their children with albinism, and exploring how such threats
directly impact overall health, I coded the research literature as follows: myth/stigma and health;
discrimination and health; gender-specific threats and health; and violence and health. Of note,
the language of “human rights” within research on albinism as a research aim, lens, or topic is

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quite new (Reimer-Kirkham et al., 2019). Ikponwosa Ero’s appointment as the UN Independent
Expert on the enjoyment of human rights by persons with albinism in 2015 has highlighted
human rights as foundational in all efforts to improving the lives of persons with albinism. By
applying a human rights lens to the current literature, I was able to discover various authors that
speak to human rights violations, although the explicit language was not frequently used until as
late as the year 2018, with Burke et al. (2014) being one of the first in this sample of the
literature to reference the phrase “human rights.”
Related in large part to ongoing myths and spiritualized beliefs regarding the causes of
albinism and the value, or lack thereof, placed on a person with albinism, several threats to their
human rights exist (Burke, 2014; Franklin et al., 2018; Reimer-Kirkham et al., 2019; Taylor,
Bradbury-Jones, & Lund, 2019; UNGA, 2018). Various sources discussed widely held beliefs
regarding the causes of albinism, many of which are gendered in nature and represent a mixture
of biomedical knowledge with traditional and supernatural beliefs (Baker et al., 2010; Braathen
& Ingstad, 2006; Brocco, 2015; Bryceson, Jonsson, & Sherrington, 2010; Cruz-Inigo et al., 2011;
Franklin et al., 2018; Gaigher et al., 2002; Imafidon, 2017; Kromberg et al., 1987; Kiishweko,
2016; Mulemi & Ndolo, 2014; Reimer-Kirkham et al., 2019; Taylor et al., 2019; UNGA, 2017b,
2019a). Brocco (2016) found that where there were no relatives or ancestors of a child’s parents
known to have albinism, the fault would lie on the mother alone and she and her affected child
would be rejected. Such causal myths include the belief that if a pregnant woman looks at
someone with albinism, her baby will have albinism unless she spits on the ground (Braathen &
Ingstad, 2006). It is also widely held that women who deliver babies with albinism are
themselves sick (Braathen & Ingstad, 2006; Brocco, 2016), have broken a taboo (e.g., becoming

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pregnant during menstruation, laughing at another person with albinism) (Bradbury-Jones, Ogil,
Betts, Taylor, & Lund, 2018; Gaigher et al., 2002), committed adultery with a white man
(Kiishweko, 2016; Taylor et al., 2019), slept with an evil spirit (“tokolosh” in Shona tradition)
(Baker et al., 2010), or are witches or cursed themselves (UNGA, 2016b). Such gendered myths
further the intersecting discrimination that these women and their children with albinism
encounter (e.g., gender, disability, colourism) (Kiishweko, 2016; UNGA, 2017a, 2019a). Held
responsible for their child’s condition (Brocco, 2016), which is widely seen as a bad omen or
curse on the woman and her family, mothers impacted are confronted with sudden abandonment
by partners, families, and communities (UNGA, 2016a, 2016b, 2019a). These mothers are
frequently consigned to the fringes of society, either out of self-protection or by their community
to ensure her and her children do not expose others to the curse of albinism (UNGA, 2016a,
2016b, 2019a).
Belief in such myths result in stigma and discrimination against mothers and their
children with albinism and they are directly linked to human rights violations. Particularly
disturbing is the belief that the body parts of persons with albinism hold supernatural powers and
are therefore used in harmful witchcraft-related practices to produce potions or amulets believed
to bring luck or good fortune to the possessor (Aquaron et al., 2009; Brocco, 2015; Cruz-Inigo et
al., 2011; Imafidon, 2017; Lynch et al., 2014; Reimer-Kirkham et al, 2019; Shewedi, 2011;
Taylor & Lund, 2008; Taylor et al., 2019). Such violent practices have fueled a market whereby
contract killers traffic in the body parts of persons with albinism for a large profit (Burke et al.,
2014, p. 118; Bryceson et al., 2010; Reimer-Kirkham et al., 2019; Taylor et al., 2019). As
reported by Ero (UNGA, 2016a, 2016b, 2017b, 2019a), women and children with albinism are

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disproportionately subjected to violent attacks, mutilations and murders. Gender-specific human
rights violations exist to an alarming degree (UNGA, 2019a). These violations include reports of
violence against mothers of children with albinism at the hands of spouses/partners as well as
reports that women and girls with albinism experience sexual violence due to the myth that
sexual intercourse with such a woman or girl will cure HIV/AIDS (Baker et al., 2010; BradburyJones et al., 2018; Butler-Jones, 2013; Duri & Makama, 2018; Imafidon, 2017; Kiishweko, 2016;
Pooe-Monyemore, 2007; Taylor & Lund, 2008; Taylor et al., 2019). This belief has not only left
many women with albinism also infected with HIV/AIDS, but as Kiishweko (2016) noted, it
raises concerns regarding their safety and freedom of movement—violating basic human rights.
In Ero’s report to the UNGA (2016b, 2019a), children are often targeted for their body parts for
use in witchcraft-related practices due to the notion that their innocence enhances the powers of
amulets or charms that are created. Mothers of such children are subjected to harassment,
psychosocial distress, and violence as they attempt to protect their children from harm (CruzInigo et al., 2011). Further, the poverty they face further exposes them and their children to
insecure living environments where they become easy prey to such predators (UNGA, 2016,
2019a). As the burden of parenting largely relies on mothers, so does the fear of threats and
attacks (Shewedi, 2011). This experience is circumnavigated by keeping their children close to
home, at home, or at least near them as much as possible. In an effort to ensure their child’s basic
safety, parents of children with albinism may hide their children at home, avoiding the risk of
sending them to school, work, or outside the home—resulting in further limitations to their
freedoms (Baker et al., 2010; Burke et al. 2014; Franklin et al., 2018; Kiishweko, 2016; Morris et
al., 2015; Shewedi, 2011; Taylor et al., 2019). Recently, innovative methods to protect persons

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with albinism have been introduced. Mswela (2019) analyzed through a legal lens the part that
GPS tracking devices could play in protecting children. The suggestion is that parents would be
notified if their child with albinism leaves a certain “safe zone,” allowing them to then notify
authorities and take swift action (Mswela, 2019). While ethical arguments exist surrounding the
use of GPS tracking methods (e.g., confidentiality and privacy) (Mswela, 2019), proposals of
such methods illustrate the everyday reality that mothers (and parents) face in identifying ways
to keep their children safe from harmful attacks. Widespread belief in myths around the causes of
albinism results in mothers and their children having to navigate such threats in the face of
poverty, threats to their human rights, difficulty obtaining health care, and various other SDoH
impacting their well-being (Reimer-Kirkham et al., 2019).
While few authors of health-related research articles specifically discuss human rights or
employ a human rights framework to research or recommendations, Ero’s reports to the UN
Human Rights Council, provide exactly this (UNGA, 2016a, 2017b, 2019a, 2019b). As ReimerKirkham et al. (2019) identified, health researchers are increasingly incorporating a human rights
lens or framework into their research or analysis on the situation that persons with albinism face
in parts of the world (Bradbury-Jones et al., 2018; Burke et al., 2014; Franklin et al., 2018;
Mswela, 2019; Taylor et al., 2019). However, by and large, this uptake has been led by Ero. In
recognition of her mandate as the Independent Expert on the enjoyment of human rights by
persons with albinism, she has garnered support from various state actors, NGO and CSO
stakeholders, grassroots leadership, and international human rights activists to highlight the
concerns of persons with albinism the world over (UNGA, 2016a, 2017a, 2017b, 2018b, 2019a).

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Social Influences on the Experience of Mothering Children with Albinism
In this section I explore the social influences that impact mothers of children with
albinism, including the social constructions of gender/womanhood and various SDoH. These
concepts were identified in the research literature using the following codes: social constructions
of womanhood; faith, spirituality, and religion; and SDoH. Poverty, gender, disablism
(discrimination), sociocultural views (myth and stigma), physical location, availability of health
and social services, education, and employment are the SDoH that I focused on when coding the
literature. Such influences are fairly well documented in the research literature as they pertain to
people with albinism; however, there is a paucity of evidence as to how such outside influences
impact mothers and the experience of mothering children with albinism. This current study adds
to the evidence regarding such experiences.
Social constructions of gender/mothering. Brocco (2015) asserted that regardless of the
mother having albinism herself, “the most important element of the dowry that a bride-to-be has
to assure is that she will give birth to healthy (and black) children” (p. 1148). Other authors
(Brocco, 2015; Hudson-Weems, 2019) noted that within much of African culture, marriage and
family is paramount, particularly for women. Directly related to generations of myth and
superstitious beliefs attached to albinism, this expectation is disrupted when a woman delivers a
baby with albinism, particularly if neither parent has albinism themselves (Aquaron et al., 2009;
Brocco, 2016; Duri & Makama, 2018). Unless there is a clear and known link to albinism within
the ancestral family line of either the mother or father, Brocco (2015) noted that the blame rests
on the mother who is then labeled a “‘sick person’ (mtu mgonjwa/watu wagonjwa)” (p. 1148).
This gendered belief creates enormous potential for disparities in the health of women and their

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children impacted by albinism. While there are references to mothers abandoning their children
with albinism (Masanja & Magembe, 2015), Bryceson et al.’s (2010) study provided the counternarrative of a mother who, pressured to abandon or murder her son with albinism, fled her
husband and home community to find refuge somewhere safer. Such narratives exist at a clear
risk to the livelihood of mothers who, fleeing their unsupportive partners and communities, face
mothering alone without support and in the face of poverty. Duri and Makama (2018) found that
women with albinism and women who give birth to children with albinism “are the worst
affected” in terms of negative sociocultural experiences, asserting the interplay of misogyny and
its detrimental effects on mothers who are blamed for the birth of affected children (p. 82). Duri
and Makama (2018) noted that fewer females with albinism go on to marry than males with
albinism; even fewer marry black men in comparison to males with albinism who marry black
women. This discrepancy must impact the way in which girls with albinism are raised and the
level of concern that parents carry regarding their daughters’ future livelihood given the strong
expectation placed on marriage and family, particularly for women.
Kiishweko’s (2016) dissertation detailed the experiences of mothers of her participants
with albinism. Her findings suggest that mothers of children with albinism experience their
mothering as “hurting,” as “sacrifice,” as “exclusion,” and as “loneliness” (p. 122). As noted
above, childbirth and mothering are central to the role of a Tanzanian woman (Brocco, 2015).
Describing traditions in Tanzania around childbirth, Kiishweko (2016) noted the community
celebration that is typical. Childbirth brings “joy and happiness to family members, neighbors,
friends, and relatives” (p. 122). However, in the presence of albinism, quite the opposite is
found: Myths and belief suggest that just by looking at a person with albinism can bring the

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“curse” to your own family (Kiishweko, 2016). Poignantly, Kiishweko (2016) described this as
“a vice versa type of experience where [mother] and her children stain and contaminate each
other. This can mean that emotions of hate that stick on albinism…can instigate misogyny,
which always sticks on women” (p. 122).
Poverty. As is becoming apparent, researchers highlight the close interrelationship of
poverty (socio-economic status) and albinism (Estrada-Hernandez, 2007). Brocco (2016) stated
that “most of the people with albinism in the study were living in a state of severe poverty and
vulnerability” (p. 240). This is affirmed in much of the other research literature (Braathen &
Ingstad, 2006; Cruz-Inigo et al., 2011; Estrada-Hernandez et al., 2007; Kiishweko, 2016; Lynch
et al., 2014; Masanja & Magembe, 2015; Shewedi, 2011; Taylor & Lund, 2008). Masanja and
Magembe (2015) described the impact of poverty on the whole family, noting how it impacted
the concept of “hope for a better future” in their participants impacted by albinism (p. 97).
Indeed, living within such persistent myths and negative beliefs about albinism impacts various
levels of one’s sense of self and ability to plan for the future. Mothers impacted by albinism are
acutely impacted by poverty upon the abandonment of their partner, faced with being thrust into
the position of sole breadwinner. This poverty impacts a mother’s ability to provide basic needs
such as shelter, food, and security along with education and access to health needs (Brocco,
2016; Kiishweko, 2016; Shewedi, 2011). Kiishweko (2016) described the “feminization of
poverty” and the connection to “mothers’ financial struggles to support their [children’s]
educational needs” (p. 128). For example, Kiishweko (2016), with a story about a daughter with
albinism who is illiterate, argued that this is not representative of a mother’s irresponsibility, but

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rather it is the interplay of chronic poverty, lack of support, and misogyny that creates the
position that mothers of children with albinism are in (Kiishweko, 2016).
Bryceson et al. (2010) and Burke et al. (2014) foregrounded the broader, capitalist
underpinnings at play in the relationship between poverty and violence against persons with
albinism. Bryceson et al.’s (2010) exploration of the mining boom in Tanzania as impacting the
human right to life of persons with albinism provided the exemplar of Burke et al.’s (2014)
argument regarding widening inequities and structures of power. They argued that “oppression
of [persons with albinism] cannot be understood only as arising from traditional beliefs, but also
emerges for structural reasons which are related to rapid change and new forms of inequity in
wealth and power” (p. 119). This argument must also include gender and the manners in which
power and privilege is largely afforded to men in the society, regardless of whether they stay
with their family impacted by albinism or not.
Access to education. Many authors have contributed to a substantial discussion in the
research literature related to concerns around access to education for persons with albinism.
While little of this discussion centres around how mothers of children with albinism experience
this access, or lack thereof, there are several insights that help to inform the study at hand. In
order to assess the research literature for this theme, I coded relevant details to the code “access
to education.” The following summarizes this access.
Concerns around education for children with albinism are often written about in the
research literature. There is discussion around the lack of appropriate resources and specially
trained teachers in mainstream, local schools (Gaigher et al., 2002; Kromberg, 2017; Masanja &
Magembe, 2015; Pooe-Monyemore, Mavundla, & Christianson, 2012). Various authors noted

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the financial burden of sending children to school, citing the cost of protective clothing and
supplies (Kiishweko, 2016; Shewedi, 2011). Even more, the cost of sending their children to a
private school (e.g., a school for the visually impaired) where there are resources such as visual
aids and teachers that are knowledgeable regarding the particular needs of students with albinism
can be prohibitive (Brocco, 2016; Lund & Gaigher, 2002). As already discussed, mothers and
families impacted by albinism are making key decisions in the context of poverty (Brocco, 2016;
Franklin et al., 2018). Without access to suitable education, future employment opportunities for
children with albinism often remain limited to manual labor outdoors which further exposes
them to the harmful effects of the sun (Brocco, 2016).
The decision to send their children with albinism to school is multilayered and parents
must take into consideration their child’s safety in terms of walking to and from school (Franklin
et al., 2018), safety while at school, cost and quality of schooling, as well as the location of
schooling (Burke et al., 2014; Kromberg, 2017; Lund & Gaigher, 2002; Lynch et al., 2014).
Parents are often confronted with teachers who know very little about albinism and the low
vision and skin risks that are associated, resulting in unacceptable care and protection provided
to their children in mainstream schools (Kromberg, 2017). Baker et al. (2010) noted that access
to special schools for visually impaired learners provides a well-supported environment that is
equipped with necessary visual aids and educators aware of the low visual acuity that
accompanies albinism. The concern is that without these supports, students face a number of
practical barriers in mainstream schools that lack necessary provisions (Baker et al., 2010). Lack
of infrastructure in rural areas due to chronic poverty prevents support measures in local schools
to ensure children with albinism have the education and services they require to succeed

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(Gaigher et al., 2002). Children with albinism often face discrimination within the school from
teachers and peers alike, resulting in an unsafe environment in which their opportunities to thrive
academically are threatened (Baker et al., 2010; Kiishweko, 2016; Pooe-Monyemore, 2007).
Pooe-Monyemore et al. (2012) articulated the impact that educators who are knowledgeable
about OCA 2 have on a student’s sense of self, belonging, and their development. Along with a
child’s family, teachers can provide key support for children with albinism.
Some mothers engage in “hiding behaviors” to protect their children from attacks, thus
preventing them from attending government day schools (Burke et al., 2014; Franklin et al.,
2018; Shewedi, 2011). For these reasons, many parents choose to send their children to
government holding centres (discussed in depth in Chapter Five) or boarding schools (both
referred to in the literature as “residential resource centres,” “camps,” or “special schools”) for
children with disabilities, many of which are sponsored and promoted by the government or
NGOs, in locations that are deemed to be safer (Burke et al., 2014; Franklin et al., 2018; Lund &
Gaigher, 2002; Lynch et al., 2014). These government holding centres were initiated by the
government in response to the vicious attacks on persons with albinism and what were to be
temporary shelters have now become more permanent homes for these children. However, as
noted by Burke et al. (2014), the impact on families and children separated by such schools or
camps specifically in Tanzania has not been given enough attention. While improving security in
some ways, the practice has also created other concerns including overcrowding of facilities,
child abuse, and neglect and abandonment of children by their families (Burke et al., 2014).
There are various challenges to this strategy as a sustainable solution (Burke et al., 2014;
Franklin et al., 2018; Masanja & Magembe, 2015). While it may provide temporary physical

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security, this separation/segregation leads to “loss of other freedoms and rights, such as family
life, engagement in the community or freedom of movement” (Franklin et al., 2018, p. 6).
Masanja and Magembe (2015) asserted that this separation could lead to “a generation gap in
which family and community values are never passed on to the concerned children” (p. 105).
Such concerns were addressed by Burke and colleagues (2014) as well.
Notably, Kromberg (2017) and Masanja and Magembe (2015) addressed the positive
impact of parents educating their children early on and throughout their development about their
albinism condition. This is shown to empower children with their own understanding of their
condition, enabling them to educate their peers and others around them to counteract
stigmatization. Kromberg (2017) further suggested that “such knowledge may result in a better
self-concept in the affected person” (p. 177). Mothers in Kiishweko’s (2016) dissertation
research were identified as figures of support and encouragement to obtain as much education as
possible, even as they faced poverty. In interviews with university students with albinism,
Kiishweko (2016) found that these participants recognized that once their mothers had been
abandoned by their fathers, their mothers struggled to raise them as single parents. Participants,
as grown children with albinism, offered that their mothers often had little to no formal education
themselves, “with an income too unstable to adequately fund their daily basic requirements, let
alone their school requirements” (p. 121). This finding is again representative of the
(non)choices that mothers face when navigating mothering in the context of poverty. Kiishweko
(2016) detailed that mothers in her study were unable to provide adequate “home learning
environments or facilities that would support [their child’s] education” (p. 121). Again,

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Kiishweko (2016) highlighted such lacks as driven by “misogynistic structures which give
women limited education and formal employment prospects” (p. 122).
Access to health and social services. To identify how the current research literature has
discussed how mothers of children with albinism access health and social services, I coded
literature under the following themes: access to health and social services that is government led;
access to health and social services that is NGO and/or CSO led; and access to health-related
knowledge and education. As this study focused on the experience of mothers, particular energy
was given to search for details regarding how mothers who delivered a child with albinism were
equipped with health knowledge at the time of delivery and/or at the time of hospital discharge.
In the following section, I summarize evidence related to how mothers access health and social
services for their families.
Poverty, again, and lack of consistent health care and social services subsidized by
governments are identified as key prohibitive factors in accessing health care, lifesaving
sunscreen, and protective clothing and hats for their children (Shewedi, 2011). Beginning at
delivery, Braathen and Ingstad (2006) noted in their study in Malawi that not one mother was
given an adequate explanation of why their child had been born with albinism and only a few
were told to keep their child out of the sun. Further, the prohibitive cost of sunscreen coupled
with access to information on using it effectively is routinely mentioned in the research
literature, with families using it sparingly or only a few days a week (Braathan & Ingstad, 2006;
Butler-Jones, 2013; Cruz-Inigo et al., 2011; Taylor & Lund, 2008;). Butler-Jones (2013)
identified in her study the prohibitive cost of other necessary health-related needs including eye
care (e.g., assessment and eye glasses) and HIV/AIDS treatment, particularly related to the false

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belief that sexual intercourse with a woman with albinism can cure HIV/AIDS. Mobile skin and
vision clinics organized by NGOs/CSOs remain a staple in reaching affected families,
particularly in rural areas (Cruz-Inigo et al., 2011). Baker et al. (2010) noted the burden placed
on families in light of this lack in health and social service structures. Pooe-Monyemore et al.
(2012) called for the government departments of health and education to ensure families are
equipped to deal with the condition, by providing ample sunscreen, access to regular vision care
and dermatology assessments, and ongoing health education about, at a minimum, the condition.
This was echoed by participants in the study by Bradbury-Jones et al. (2018) asking for more
government support to best care for their children with albinism. Kiishweko (2016) detailed the
distance that mothers must go to obtain adequate health care for their children with albinism:
“[S]everal kilometers by foot to take Rita to an eye clinic that was specifically for school
children with albinism…Rita had been receiving limited health attention at the village clinic she
was attending” (p. 125). Existing healthcare services may not be adequately equipped to provide
particular care for persons with albinism.
Some authors argued for genetic counseling services to be mainstreamed. Morris et al.
(2015) highlight in their study the need for mainstream genetic services that are well advertised
and easily accessed by families impacted by albinism, a service that is advocated for by mothers
of children with albinism in their study. Ehlers (2002) and Baker et al. (2010) viewed this as an
important opportunity for genetic nurses to be trained and mobilized to provide services to new
mothers of infants with albinism, providing women with as much information about the
condition as possible. Further, Ehlers (2002) argued, from a South African health policy
perspective, that the work of genetic nurses could further assist changing social beliefs about

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albinism, particularly in a timely fashion following the delivery of a child with albinism.
Affirming this, Baker et al. (2010) asserted that genetic counselling would be empowering to
mothers who face the burden of counteracting negative myths and beliefs that she will confront
from her own community and society at large. Of note is the manner in which this call for
genetic nurses or counsellors contrasts sharply with current accounts of healthcare providers
operating under the very negative myths and beliefs harmful to persons with albinism (Imafidon,
2017). Such accounts include nurses and hospital staff who are unwilling or afraid to touch
children with albinism who present in need of healthcare (Baker et al., 2010). Imafidon (2017)
calls for healthcare providers to be better equipped to help families and individuals impacted by
albinism address the various health-related concerns as well as to dispel myths and beliefs. Most
notably, Imafidon (2017) suggests this should be achieved by both willful engagement on the
part of providers or made compulsory by government mandate. However, there appears to be
little promotion of genetic counselling outside of the South African context. While Imafidon
(2017) calls for “counselling” in each health centre, genetic counselling is not explicitly
discussed. Components of genetic testing (e.g., laboratory testing) and prenatal genetic
counseling do not appear to be championed broadly within the African context.
As noted by Lynch et al. (2014) in their research in Malawi, “families who had access to
the right clinical services, schooling (e.g. resource centres) and advice (TAAM) felt better placed
to make decisions about their children’s physical and emotional well-being and education” (p.
230). Such support and resources equip parents with necessary strategies to best support their
children with albinism to thrive at each developmental stage. Notably, Pooe-Monyemore (2007)
identified the “significant role of mothers in the nuclear family” to advocate for their children

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with albinism in terms of health and education (p. 87). This echoes key aspects of Africana
Womanism, in which family-centrality and the advocacy work of mothers, including the power
of a mother’s voice, are valued, celebrated, and revered (Hudson-Weems, 2019).
Recent research out of the United States of America (USA) by Corn and Lusk (2018a,
2018b) suggested that even in the Global North, parents may not receive timely information
regarding vision screening and are not provided with detailed information regarding their child’s
functional visual acuity. Recommendations by Corn and Lusk (2018a, 2018b) included ensuring
that general practitioners provide parents with the necessary health information and direction to
resources (such as NOAH). This research highlighted that, despite infrastructure and medical
advancements in the USA, not every family impacted by albinism is accessing resources equally.
In some part, this is due to lack of knowledge by healthcare practitioners. However, the
disparities are stark when we compare the North American context to that of sub-Saharan Africa,
where most of the research literature stems from.
Support for mothers and their children with albinism. Much of the current research
explores support for persons impacted by albinism from a health care, education, and NGO/CSO
perspective. As already described, there is limited discussion around parenting and parenting as a
single mother. In the following section, I describe the evidence that relates to how mothers of
children with albinism and their families experience outside support, generally as well as in
terms of specific resources available. Using the following codes, I captured themes within the
research literature that relates to such support: family dynamics (e.g., how mom and baby are
treated by family and in-laws); receptiveness of the community; community support; government
support and resources; and NGO/CSO support and resources.

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Some researchers have studied how mothers of children with albinism regularly face
negative reactions (as those already described above), with fewer findings related to support
received. Brocco (2016) identified how mothers garner support within their families and amongst
in-laws when an elder, particularly the grandfather, identifies the child with albinism as looking
like other relatives in the family line. When linked to lineage, it appears that mothers have a
fighting chance at obtaining support within their families. However, when no relative on either
side is identified as having had albinism, mothers face the reality of accusations leveled against
their behavior (Brocco, 2016).
Braathen and Ingstad (2006) noted the unwavering love of mothers in their study for their
children with albinism despite discrimination and ostracism by their community and strangers
alike. However, they noted that these negative responses sometimes improved over time, giving
way to some semblance of acceptance, which could be interpreted as support (Braathen &
Ingstad, 2006). Butler-Jones (2013) in her dissertation on the impact of resilience of persons,
particularly women with albinism, found that women identified “most of their suffering was the
result of external forces, and the greatest cause of their suffering was people in their respective
communities” (p. 50). The need to belong alongside the concept of group support was
highlighted in Butler-Jones’ (2013) research, including a desire to form a women’s support
group. This finding in the current research literature provides the most explicit reference to
women-specific support, to date, even though this was suggested in terms of women with
albinism and not necessarily mothers of children with albinism.
Similarly, albinism societies were identified by researchers as sources of support more
generally (i.e., not discussed in terms of supporting mothers specifically) (Gaigher et al., 2002).

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In terms of support potentials within faith communities or other community-based organizations,
Brocco (2016) identified that such belonging can “contribute to the formation and transformation
of the subjectivities of people with albinism with regard to the creation of a group identity” (p.
240). Again, this conclusion is not linked specifically to mothers impacted by albinism, but
certainly suggestive of support networks that benefit all parties impacted by albinism.
Educators were also identified as key sources of potential support for children with
albinism and, thereby, their families. Lynch et al. (2014), Bradbury-Jones et al. (2018), and
Shewedi (2011) identified the potential of teachers in a supportive role, especially when
equipped with professional development strategies. Investing in teachers who are counselled on
how to best support children with albinism in their classrooms assists to increase the self-esteem
and self-concept of children with albinism (Pooe-Monyemore et al., 2012; Taylor et al., 2019).
Indeed, the common denominator in the research literature is for further support directed to all
affected and all in helping roles (Baker et al., 2010; Burke et al., 2014; Cruz-Inigo et al., 2011).
Chapter Summary
In this chapter, I have synthesized the existing research literature related to the experience
of mothering children with albinism in Tanzania. With the help of a library scientist, I conducted
an extensive search of various databases to ensure that all relevant research was reviewed for
inclusion in this literature review. Using QSR International’s NVIVOTM 12 software, I coded the
literature to answer key questions relating to the study objectives. Kromberg et al. (1987)
provided the singular article whose purpose was to research how mothers experienced the birth
of a child with albinism. I detailed how various literature speaks to similar themes, with only a
few (e.g., Kiishweko, 2016) delving into the particulars of the mothering experience beyond

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Kromberg et al.’s (1987) germinal work. This chapter provides the rationale for conducting
further research specific to the experience of mothers impacted by albinism. In the following
chapter, I describe the research methods used in this focused critical ethnography exploring the
social influences on the experience of mothering children with albinism in Tanzania.

Figure 2. View from the car window navigating narrow, dirt roads washed out by heavy rains.
Deep crevices in the roads made passage nearly impossible at times between interview sites.
Inadequate infrastructure such as roadways throughout Dar es Salaam and Mwanza highlighted
the risk to safety and security for families impacted by albinism. In difficult-to-reach areas,
escape or emergency response systems are hampered.

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Chapter Three: Research Methods
The purpose of this ethnographic study was to explore the social influences on the
experience of mothering children with albinism in Tanzania. In Chapter Three, I will describe the
research methodology undertaken to address the purpose and objectives of this study.
Specifically, I outline the study design, sampling strategies, sample description, data collection
procedures, and analysis. I conclude the chapter by describing efforts to ensure and account for
scientific quality and credibility, discussing researcher reflexivity and positionality, offering the
limitations of this study, and reviewing ethical considerations undertaken both in and out of the
field.
Research Design and Methodology
Due in large part to the dearth in research related to the specific lived experiences of
mothers of children with albinism in sub-Saharan Africa, a qualitative approach was deemed
suitable for examining this phenomenon. Because of the attention required to culture and
exploring tacit, insider knowledge, I chose an ethnographic research approach, namely focused
critical ethnography (Streubert & Carpenter, 2011; Wolcott, 1999). In consultation with my
thesis committee, Africana Womanism (Hudson-Weems, 2019) was also drawn on for its
particular attention to power structures, intersectionality, culture, and inequities.
Ethnography
Considered the oldest method of qualitative research, ethnography is rooted in
anthropology and is used as a tool for the discovery of cultural knowledge (Streubert & Rinaldi
Carpenter, 2011). Ethnography was a response to the inadequacies of traditional science as
researchers needed a method “of studying groups of individuals’ lifeways or patterns” (p. 167).

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Spradley (1980, as cited in Streubert & Rinaldi Carpenter, 2011) noted that ethnography went
beyond studying people: Rather, “ethnography means learning from people” (p. 168). This
principle is directly in the line with my values at the core of this study. The methodology has
several schools of thought: classical, systematic, interpretive or hermeneutic, and critical
(Streubert & Rinaldi Carpenter, 2011).
As this study aimed to acknowledge and address the intersectional experience of women
impacted by albinism as well as “address the historical, social, political, and economic
dimensions” that are part of creating such experiences, using the particular method of critical
ethnography was imperative (Polit & Beck, 2017, p. 480). Critical ethnography is distinct from
other ethnographic approaches in that its focus is “on raising consciousness and aiding
emancipatory goals in the hope of effecting social change” (p. 480). With growing conversation
occurring on national and global scales regarding the human rights of persons with albinism in
sub-Saharan Africa (Franklin et al., 2018; Reimer-Kirkham et al., 2019; UNGA, 2016a), this
study adds to the literature the intersectional experiences of mothers of children with albinism in
an effort towards addressing the human rights of persons with albinism and their families. To
identify that this study centres on a small population concerning a very particular concern in the
specific context of Tanzania (Dar es Salaam and Mwanza to be more specific), the term
“focused” is added to the methodology (Streubert & Rinaldi Carpenter, 2011).
Africana Womanism
As noted by Streubert and Rinaldi Carpenter (2011), central to “the qualitative research
paradigm” is the focus to understand rather than “to explain, predict, or control outcomes” (p.
11). Particularly in critical ethnography, choosing a theoretical framework that considers both

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culture and history in its theoretical underpinnings is important. Hudson-Weems (2019), in
response to what she and other scholars of colour agreed was a largely white feminist movement
that had exploited the struggle of women of colour to advance their ideology versus incorporate
and genuinely consider the particular experience of the Africana woman, introduced her theory
of Africana Womanism in the late 1980s with her first publication in 1989. Africana Womanism
predated Crenshaw’s (1989, 1991) “intersectionality” theory, having already explored the
limitations of the gender-central theories available at that time, particularly to women of colour.
Central to Africana Womanism (Hudson-Weems, 2019) are gender, race, and class. As HudsonWeems (2019) asserts:
Africana Womanism was designed to name, define and refine an authentic paradigm
explicating the role of the Black woman within her historical and cultural Afrocentric
family-centred matrix. On the other hand, feminism, and its current evolution from
gender exclusivity to intersectionality, was designed for and by White women. (p. 109)
In this way, family is acknowledged and honored as central and men, rather than identified as
oppressors of women, are embraced as co-partners in the Africana struggle of inequity and
injustice based on racism and classism (Hudson-Weems, 2019). Considering the centrality of
family and mothering to Hudson-Weems’ Africana Womanism, this framework provides a
“particular set of guiding principles” from which to understand the phenomena at hand (Streubert
& Rinaldi Carpenter, 2011, p. 11). Figure 3, below, offers Hudson-Weems’ (2019) illustration of
the eighteen characteristics highlighted in her framework (further expounded upon in Chapter
Six). Most importantly, Africana Womanism is affirmed by African scholars within the African
context, such as the Zimbabwean scholars Muwati, Gambahaya, and Gwekwerere (2011), as a

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theory grounded in “knowledge and values derived from the African people’s cultural
experience” (p. 1). Further, this framework fits well within the Tanzanian context and challenges
me as a White, North American researcher to consider participants’ experiences from a paradigm
different than my own. Hudson-Weems (2019) affirms this fit, stating, “Africana Womanism is
an ideology created and designed for all women of African descent. It is grounded in African
culture, and therefore, it necessarily focuses on the unique experiences, struggles, needs, and
desires of Africana women” (p. 24).

In Concert with Male in
Struggle
Whole Authentic

Male

Figure 3. Africana Womanism. Hudson-Weems’ (2019) illustration of the eighteen
characteristics identified within her theoretical framework.
Trauma-Informed Research
Nursing continues to explore and adopt, in various practice and educational settings, the
principles of trauma-informed practice (or care) (Cannon et al., 2020; Stokes, Jacob, Gifford,

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Squires, & Vandyk, 2017). Some argue that its principles are embedded in the very heart of
nursing (Stokes et al., 2017) and, further, are well situated within population health science,
shifting “the focus from clinical practice to the development of trauma-informed programs,
systems, and policies” (Tebes, Champine, Matlin, & Strambler, 2019, p. 495). Embedding
trauma-informed frameworks into research methodology is a natural step, particularly when we
consider how “research is involved in the ‘design of systems’ ” (Day, 2018, para. 8; Tebes et al.,
2019). Carello and Butler (2015) suggest that to be trauma-informed, in any context,
[I]s to understand the ways in which violence, victimization, and other traumatic
experiences may have impacted the lives of the individuals involved and to apply that
understanding to the design of systems and provision of services so they accommodate
trauma survivors’ needs and are consonant with healing and recovery. (p. 264)
Considering the structural vulnerability of mothers impacted by albinism and, certainly, of
persons with albinism themselves, the absolute need to engage systems and policies that threaten
to traumatize and re-traumatize is obvious: Any research engaging with this community must
tend to methods of trauma-informed practice just as a health practitioner must when providing
direct care. Carello and Butler (2015) cite five principles to guide such practice: safety,
trustworthiness, choice, collaboration, and empowerment. The Substance Abuse and Mental
Health Services Administration (SAMHSA) (2017), in their brief on “building resilient and
trauma-informed communities,” adds peer support and history, gender, and culture (p. 1). These
principles apply seamlessly to qualitative research methodologies, particularly this critical
ethnography of which it is an anchoring lens. Shimmin, Wittmeier, Lavoie, Wicklund, and Sibley
(2017) assert that applying “intersectional analysis” alongside a trauma-informed lens to research

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methodology, the “binary categorization of ‘patient’ or ‘public’ and ‘researcher’ is exposed
revealing spaces where power can be resisted and renegotiated”—strengthening trust and
resiliency on both sides (p. 4). I believe this was well achieved by using Africana Womanism
(Hudson-Weems, 2019), which locates the roles of race, class, and gender along with cultural
and colonial histories as the guiding lenses from which to enact this research.
Setting: Describing the Fieldwork
With an invitation from NGO-1 to conduct this study for its potential to evaluate and
influence their programming for mothers of children with albinism, data was collected via
focused critical ethnographic fieldwork in Tanzania over two separate trips. The first field visit
was for six weeks from March to May 2019 and the second was for four weeks from October to
November 2019. Fieldwork in Tanzania was divided between two regions: Dar es Salaam, the
largest city and formal capital on the shores of the Indian Ocean in Tanzania, and Mwanza, a
region located on the shores of Lake Victoria in Tanzania with both city and rural environments
(see Figure 4 for a map of Tanzania). These regions provided both urban and rural perspectives.
The variation between key stakeholders and mothers from two distinct locations in Tanzania
ensured adequate data with a diversity in responses that lent itself to rich analysis and
interpretation.
On arrival, I spent the first few days acclimating to the tropical heat of Dar es Salaam,
adjusting to the new time zone, and becoming acquainted with the Tanzanian context by visiting
with colleagues and establishing rapport at our partner NGO office, exploring the city via bajaji
(i.e., small, three-wheeled taxis), eating Tanzanian cuisine (e.g., chips mayai [French fry omelet],
tilapia with ugali [a thick polenta-like starch made from cornmeal], and barbecued goat meat),

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and drinking a lot of orange Fanta and water to combat the heat and dehydration. These
experiences all occurred alongside staff at our partner organization who graciously laughed their
way through each one with me, keen to help me learn more Kiswahili. With several blunders
along the way, these colleagues were gracious with me and generous with their knowledge and
experience. I maintained an ethnographic mindset by reading local newspapers (those that were
in English), listening to local music, watching local news broadcasts, reading African literature,
and engaging with taxi drivers, shopkeepers, and the general public as much as I could.

Figure 4. Map of Tanzania. Stars indicate locations of fieldwork in Mwanza and Dar es Salaam.
(Freeworldmaps.net, 2020)
Describing Data Collection
Data collection consisted of participant observation with extensive fieldnotes, engaging
in sharing circles and semi-structured interviews. Related in part to the nature of engaging

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mothers from the mamas’2 groups as well as the communal context in which this research
situates itself, the term “sharing circle” was chosen over “focus group” to describe the setting of
the interviews. The method of sharing circles in this context has also been used by other
researchers in this field, including Bradbury-Jones et al. (2018). Semi-structured interviews
allowed for flexibility (see Appendix E for English and Kiswahili interview guides). Although
there were questions to guide sharing circles and one-on-one interviews, as Streubert and Rinaldi
Carpenter (2011) assert, “the opportunity for story telling is inherent in the format” (p. 34).
Interviews were conducted in approximately one-hour intervals at mutually agreed-upon
locations (e.g., mamas’ homes, location of mamas’ groups, cafes, places of work, and partner
organizations’ offices). Due to the very present nature of ethnography, I was prepared for both
impromptu and planned sharing circles and interviews. Both were recorded using a digital
recorder, with transcription by a transcriptionist (see Appendix F for transcriptionist
confidentiality agreement).
Due to the language barrier, I conducted the fieldwork alongside a cultural liaison,
Waithera, identified by the UN Independent Expert on the enjoyment of human rights by persons
with albinism, who provided translation of informed consent materials as well as interpretation
during interviews (see Appendix G for interpreter confidentiality agreement). Waithera and I
worked closely alongside each other throughout most of my initial six-week visit. She was

In Kiswahili, the official language of Tanzania, the word for mother is “mama.” Mothers are referred to using their
title as “mama” followed by the name of their firstborn child or the name of the child in discussion (e.g., Mama
Lightness). Throughout my thesis I will refer to mothers as mamas and to the mother’s groups I engaged with as
mamas’ groups. Not only is this how our partner organization refers to them, this is how they refer to each other and
to their own groups.
2

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pivotal in planning interviews and sharing circles with mothers and key stakeholders.
Throughout interviews, Waithera and I, using the semi-structured interview guide, consulted
with each other about the direction the interview was taking. In this way, Waithera and I cocreated how interviews and sharing circles unfolded. Because Waithera was able to translate
language and context and we were both aware of tone and body language, we were able to shift
the sequence, format, and direction of any given interview or sharing circle. This is to say that
we both remained flexible from the beginning of an interview through to the end. As a woman
with albinism herself, Waithera brought with her the ability to immediately connect with mothers
impacted by albinism. Waithera’s warmth, sense of humor, command of the context, and desire
to see this study succeed for the benefit of women impacted by albinism is a large part of this
study’s success. Waithera’s ability to bring me into the trust she established with the study
participants enabled us to gather a richness of data otherwise unattainable. Our intention together
was to create safe, sacred space to explore the life journeys of these women. Following each
interview, Waithera and I extensively debriefed what was discussed, what we might have done
differently, ideas for subsequent interviews, and, most importantly, fleshing out key topics and
their context to ensure understanding on my part.
I maintained a diligent reflexive journal both prior to fieldwork, as “before entering the
field to conduct interviews, researchers have to be open to their influence on the inquiry,” and
throughout the remainder of the study (Streubert & Rinaldi Carpenter, 2011, p. 34). Extensive
fieldnotes were taken to capture the social and contextual influences at work and to prompt
reflexivity. A fieldnote guide was used (see Appendix H for fieldnote guide) which adhered, as
much as possible, to the “language identification principle” in which “ethnographers identify in

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whose language the text is written” in order to not “lose sight of the cultural meaning of the
observation” (p. 184-185). Essentially, this means that my fieldnotes differentiated between my
observations/experiences and what was described or relayed to me and by whom (see Appendix I
for sample fieldnotes). In addition, photos were taken to capture aspects of the everyday lives of
mothers and their children, taking care to ensure anonymity (i.e., photos of participants are not
identifiable). For example, I took pictures of the meeting space where the mothers’ group is held,
the NGO offices, and at the health centre and school.
Throughout fieldwork, ongoing conversation and communication via email, WhatsApp
phone calls, and secure web conferencing occurred with Drs. Reimer-Kirkham and Astle. These
committee meetings consisted of reviewing data collection strategies and methods, refining the
interview guide and strategizing the use of time in the field with partners and with participants.
Both formal and informal in nature, the opportunity to reach out to them, not only for their
expertise and guidance, but to reflect on the work in real time, was invaluable to my process as
researcher.
Recruitment and Sampling
The sample for this thesis is a subset of the larger team project referenced in Chapter
One, and involves mothers impacted by albinism and key stakeholders. Purposive sampling
methods for key stakeholders were used to ensure substantive, rich data (Polit & Beck, 2017).
Inclusion criteria for key stakeholders included the following: either a person from Africa with
albinism themselves, or a parent of a child with albinism; or an academic/activist/advocate who
has worked alongside persons with albinism and/or conducted research specifically regarding the
experience of persons with albinism in sub-Saharan Africa. In terms of exclusion criteria for key

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stakeholders, participants were excluded if they had not worked alongside persons with albinism
and their families or if they had not researched social experiences of persons with albinism. For
mothers, inclusion criteria included the following: identifies as a mother or key caretaker of a
child with albinism. Exclusion criteria for Tanzanian mothers: does not identify as a mother or
key caretaker of a child with albinism.
My first research participant was a key stakeholder in attendance at a roundtable at the
UN in Geneva organized by Drs. Reimer-Kirkham, Astle, and Ero to set a research agenda on
human rights and albinism. As I was there in the capacity of research assistant in the broader
program of research, I was able to utilize this opportunity to obtain an important interview. All
other interviews took place once I arrived in Tanzania. Once in Tanzania, I built rapport with
NGO-1 staff and participants and used purposive and snowball sampling to secure participants
for interviews and sharing circles. Building rapport, as Streubert and Rinaldi Carpenter (2011)
suggest, including ensuring confidentiality, assists to facilitate rich dialogue. The most effective
strategy for recruitment was my partnership with NGO staff who provided access to key
stakeholders and mothers involved in mamas’ groups partially run by NGO-1 in Dar es Salaam
and Mwanza.
Description of the Sample
As asserted by Polit and Beck (2017), relatively small sample sizes in qualitative research
can produce rich, substantive data. This is particularly evident when information provided by
participants is rich in depth and story, “illuminating the patterns, categories, and dimensions of
the phenomenon under study” (p. 497). As mentioned, this study’s sample is part of a broader
study which involves eight sharing circles and individual interviews (N= 62). For the primary

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sample of this study, I drew on the narratives of six mothers. Another 12 mothers’ experiences,
suggestions, or reflections are included in a secondary sample. To further understand the context
and services or resources available, I drew on interviews with six key stakeholders. Thus, the
total sample for this thesis was 24 participants (N=24). Table 1 depicts key demographic details
related to the entire sample, including presence of albinism, age range of participants, occupation
or employment status, and religious affiliation. Figures 5, 6, and 7 illustrate the number of
children with (n= 24, 33%) and without (n = 48, 67%) albinism represented, the marital status of
mothers in this study, and the age range of children with and without albinism, respectively.
These figures provide important context to better understand the complexities within the study
sample.

Children with
Albinism, 24,
33%
Children
without
Albinism, 48,
67%

Children with Albinism

Children without Albinism

Figure 5. Number of children with and without albinism represented by mothers in this study.

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Table 1
Demographics of Participant Sample
Mother
(n = 18)

Key Stakeholder
(n = 6)

3
15

1
5

Age Range of Participant
21-30
31-40
41-50
51-60
61-70

3
7
5
2
1

2
2
1
0
1

Occupation
NGO/CSO Staff
Teacher
Social Worker
Nurse/Midwife

0
1
0
0

2
1
1
2

Demographic Characteristic
Albinism
Person with Albinism
Person without Albinism

Employment Status
Collective Income
(e.g., Mamas' Groups)
Subsistence Income (e.g., selling fruit,
milling grain, sewing, soap making
Collective & Subsistence Income
Employment Income
Retired

2

0

1
13
1
1

0
0
6
0

Religious Affiliation
Christian
Catholic
Muslim

8
7
3

4
2
0

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Due to the nature of ethnographic research, all interviews, experiences in the field, and
interactions with partner organizations speak to my understanding of the data collected and its
analysis, highlighting key participant interviews and interactions that highlight and contextualize
findings (Miles & Hubermas, 1994).

Subsequent
Marriage, 4,
22%

Never Married,
1, 6%

Married (to
father of child
with albinism),
6, 33%

Separated/Divorced, 7,
39%

Figure 6. Marital status of mothers interviewed.

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30

Number Of Children

25
20
15
10
5
0

Age Range Of Children
Age of Children with Albinism

Age of Children without Albinism

Figure 7. Ages of children with and without albinism represented by mothers in the study.

Data Analysis
Each interview was transcribed, verbatim, in English, by a hired transcriptionist. Data
was and remains stored on my password-protected computer to ensure confidentiality and data
integrity, as well as on TWU-approved cloud-based storage, ownCloudTM, to allow secure
sharing of data between myself and my committee. Once interviews were transcribed, they,
along with the extensive field notes and reflexive journals, were uploaded into QSR
International’s NVivoTM 12 software that enabled coding of each interview as well as extensive
review of my reflexive journals (see Appendix J for Study Data Codebook).

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Data analysis consisted of two aspects: coding the transcripts to organize the data, and
ethnographic writing to interpret the data. Madison (2005) describes coding as “the process of
grouping together themes and categories that you have accumulated in the field” (p. 36). Using
QSR International’s NVivoTM 12 software, I created an initial codebook where I began to
organize data collected into broad groupings. These groups included the following: vantage point
of mothers, community responses, life stages, human rights, identified needs by mothers, ideas
identified by partners, and research methodology. Streubert and Rinaldi Carpenter (2011) state
that “ethnographic data analysis is a search for patterns. These patterns make up the culture” (p.
188). With the goal being immersion in the data, I spent an extended amount of time “in the
data.” This included prolonged time reviewing interview transcripts, listening to recordings of
interviews, and reflecting on field notes and reflexive journals—coding all material throughout
the process (Madison, 2005; Streubert & Rinaldi Carpenter, 2011).
To further ensure validity and reliability, Dr. Reimer-Kirkham reviewed my initial
codebook in QSR International’s NVivoTM 12, followed by a process of ongoing co-creation of
the codebook, recognizing the iterative process of data analysis in ethnographic research. This
was achieved through regular communication and meetings with my committee throughout
fieldwork as well as during the months of data analysis that followed. Drs. Reimer-Kirkham and
Astle, as thesis supervisors and with the understanding that “identifying key categories and
themes is seldom a tidy, linear process,” were both involved in ongoing discussions around
inchoate findings (Polit & Beck, 2017, p. 536). Their expertise in the fields of qualitative
research, critical theory, and global health were invaluable to the data analysis process.

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The process of ethnographic writing for the purpose of data analysis is well noted in
qualitative research literature (Miles & Hubermas, 1994; Streubert & Rinaldi Carpenter, 2011).
The work of Clifford and Marcus (1986) calls for “ethnographers to see writing as a craft that
involves culture, aesthetics, and politics” (as cited in Silverman & Marvasti, 2008, p. 443). This
process invited an embodiment of the data as story, much like the oral story-telling tradition
enshrined within Tanzanian culture. It was in this process of ethnographic writing and rewriting
that, alongside Reimer-Kirkham, we realized that what was surfacing were rich storylines. As
Atkinson (1991) asserts:
The analytic induction of categories, themes and relationships; the explication of
meaning; and the understanding of action may all proceed via the writing itself. … The
“writing up” of the qualitative study is not merely a major and lengthy task; it is intrinsic
to the “analysis,” the “theory” and the “findings.” (p. 164, as cited in Miles & Huberman,
1994, p. 299)
These rich storylines take the place of themes typical of other qualitative methods, and emerge in
Chapter Five, following a case study of one participant in Chapter Four. The chosen case study
highlights nearly every storyline identified through the coding and ethnographic writing process.
Thus, the storylines in Chapter Five expand on key points identified in Chapter Four.
Scientific Quality and Credibility
To foster the rigour of this qualitative study, Lincoln and Guba’s framework consisting of
the following five “criteria for developing the trustworthiness” of qualitative research has been
employed: credibility, dependability, confirmability, transferability, and authenticity (Polit &
Beck, 2017, p. 559). While not without critique, frameworks and strategies such as Lincoln and

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Guba’s have been applied to enhance the rigour of qualitative studies to ensure “good qualitative
work [that] is both descriptively sound and explicit and interpretively rich and innovative” (p.
559). Carspecken (1996), a critical ethnographer himself who has written extensively on critical
theories and critical ethnography, supports Guba and Lincoln’s framework for critical
ethnographic studies.
Credibility has been achieved via the prolonged engagement and immersion in the field
as well as by way of ongoing member checking and knowledge exchange with our partners in the
field as well as with some of the mothers interviewed. With research partners in the field, this
continues to occur virtually by way of email messages as well as conference calls. With
participants, that occurred during the second field visit in October to November 2019. During
fieldwork and throughout the data analysis phase, I was able to maintain communication with
Waithera as the main cultural liaison, Ero, and other partners in Tanzania—all whom have
familiarity with the Tanzanian context. In these ongoing consultations, we “deliberate[ly]
prob[ed] to ensure that participants’ meanings were understood” (Polit & Beck, 2017, p. 564).
Dependability, which “refers to the stability (reliability) of data over time” (p. 559), has
been achieved using an audit trail to track ongoing decisions made in the research process and
data and theoretical triangulation. Data triangulation, including space and person triangulation, is
incorporated in this study. I conducted research in three separate places and with various
“level(s) of person(s)” (Streubert & Rinaldi Carpenter, 2011, p. 353): Geneva, Switzerland
during a roundtable conference on human rights and albinism with a key stakeholders; and the
Dar es Salaam and Mwanza regions with mothers of children with albinism and key
stakeholders. Theoretical triangulation is employed by way of applying “more than one lens or

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theory in the analysis of the same data set” (p. 358). Because data analysis occurred using
Africana Womanism (Hudson-Weems, 2019) and a human rights lens, I was “more likely to gain
a complete or holistic understanding” of emerging storylines (p. 358).
Confirmability, particularly as I collaborated closely with Waithera, who was also the
primary interpreter, throughout my fieldwork, was achieved through review of data, findings,
and ongoing dialogue with Waithera during my time in Tanzania to ensure “findings…reflect the
participant’s voices and the conditions of the inquiry” and not my own “biases or perspectives”
(Polit & Beck, 2017, p. 560). Transferability has been sought within the context of the mothering
experience of women with children who have albinism within the sub-Saharan African context—
acknowledging that while some findings may transfer to other regions, Africa is a continent with
varied culture and socio-political conditions. Finally, using verbatim quotes, rich description
from field notes, and photos of the everyday lives of these women and their children, authenticity
remains an ultimate goal. Polit and Beck (2017) assert that “authenticity emerges in a report
when it conveys the feeling tone of participant’s lives as they are lived” (p. 560). I have sought to
honour the voices and narratives of the women in this study ensuring they are central to each
phase of analysis and writing by attending to my own positioning, values, worldview, and
assumptions through consistent reflexivity (e.g., reflexive journals, dialogue with liaison, regular
debriefing meetings with thesis supervisors), discussed in the following section.
Researcher Reflexivity and Positionality
This focus on social change requires that I as the researcher acknowledge my own
positionality; that is, I acknowledge my “own power, privilege, and biases just as [I] am
denouncing the power structures that surround” the topic at hand (Madison, 2005, p. 7). This

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acknowledgement becomes an active practice, particularly when engaging in fieldwork, through
what is described as reflexivity, where I as the researcher embrace the “need to have an ongoing
conversation about the experience while simultaneously living the moment”—reflecting on how
my own “values and views may influence findings” (Jootun, McGhee, & Marland, 2009, p. 42;
Streubert & Rinaldi Carpenter, 2011, p. 174). Jootun et al. (2009) argue that reflective practices
throughout qualitative research studies enhance a study’s credibility. Primeau (2003) furthers the
concept of reflexivity in her assertion that it “enhances the quality of research through its ability
to extend our understanding of how our positions and interest as researchers affect all stages of
the research process” (p. 9). This reflexivity was accomplished by way of extensive fieldnotes
and guided reflexive journals (see Appendix I) throughout the study, particularly during
fieldwork in Tanzania. This reflective approach introduced the concept of interpretive reflexivity
(Lichterman, 2017). Lichterman (2017) asserts that “in a more interpretive practice of reflexivity,
ethnographers explore how they figured out other people’s meanings in the field, instead of
focusing on correlations between their claims and their social position” (p. 35). With a tendency
to get “bogged down” with the tensions of my position as a privileged, white, North American
woman in Tanzania, this concept of interpretive reflexivity lent to this study a transparency that,
hopefully, illuminates for the reader my process in drawing the conclusions that I do. Through
many statements from Waithera, “No, you aren’t understanding,” to participants providing me
with pat answers they perceived I wanted to hear, such as “NGO-1 is very good and I am so
grateful,” the way I had to navigate unearthing the reality of what I was hearing and seeing
required a willingness to not know, to be wrong, to feel uncomfortable, and to keep asking
questions until Waithera, participants, and stakeholders would decisively affirm, “Yes!”

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Limitations
As Streubert and Rinaldi Carpenter (2011) contend, while ethnographic researchers
become, in part, a part of the “cultural scene, [we] will never fully have the insider’s (emic)
view” (p. 172). This is particularly true, the authors assert, for new researchers (Streubert &
Rinaldi Carpenter, 2011). While this does represent a significant limitation, safeguards are in
place to decrease their impact: consistent dialogue with Waithera, herself a Kenyan woman with
albinism; access to conversation with the UN Independent Expert on the enjoyment of human
rights by persons with albinism, Ero; and access to consult with NGO-1 support staff to ensure
that my etic view, as an outsider interpreting what I am observing with all five senses, is as
accurate as possible. Very affirming to this process was the knowledge exchange meeting
conducted during the second field visit alongside my thesis supervisors, Drs. Reimer-Kirkham
and Astle, in which analysis to that point was confirmed and further support added with
contextualization.
Additional limitations include the relatively short length of time for ethnographic
fieldwork and the fact that I as the researcher do not speak Kiswahili. True critical ethnography
provides ample time and opportunity for the researcher to become embedded within the culture,
living amongst the local people and, potentially, returning several times to the same location for
clarification and further study (Madison, 2005). By explicitly labeling this study as “focused,” I
am introducing the study as specific to one aspect of the larger project. Regarding the language
barrier, Waithera provided not only language service, but also the unique addition of cultural
translation as well thus increasing therapeutic rapport between myself and the mothers that chose
to participate in this study. Because we traveled together and debriefed following each event, I

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had the ongoing opportunity to ensure that I correctly (as much as possible from my outsider
position) understood what was being said (and not said) during interviews, sharing circles, and
within participant observations.
In terms of representativeness of the sample, this study is limited in that most mothers
interviewed (except for one) were connected in some way or another to an NGO. As a result, the
stories gathered reflect the move from deprivation to resourced rather than providing counter
stories of women with and without resources. Future research should be conducted in such a way
that ensures a broad “spread” of participants in terms of access to and engaging in resources from
NGOs or government outlets. However, the rich description of women describing their lives and
experiences pre-NGO intervention to post-NGO intervention is remarkable—pointing to the
existence of such counter stories and what they may entail throughout their lifespan.
Ethical Considerations
Ethical approval for this study was obtained from Trinity Western University Research
Ethics Board (REB) as well as through the Tanzania Commission for Science and Technology
(COSTECH) and the National Institute for Medical Research (NIMR) in Tanzania (see
Appendices K, L, and M for research permits). Potential participants from mamas’ groups in Dar
es Salaam and Mwanza regions were informed about the study by NGO partners prior to my
arrival. Recruitment of key stakeholders also began with NGO partners and Waithera prior to
and throughout fieldwork.
Following a verbal explanation of the study’s intent, a review of the interview process,
and ensuring participants were aware of their ability to withdraw from the research at any point
(up until thesis defense in Spring 2020), participants were requested to sign a consent form.

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Forms were in both English and Kiswahili (see Appendices N and O for informed consent
forms). Because some research participants did not read or write, the process of assent was used
as needed. Verbal consent was achieved with the “affirmative agreement to participate” in the
study, following verbal explanation in their own language in place of the signed consent form
(Polit & Beck, 2017, p. 720). As recommended by Streubert and Rinaldi Carpenter (2011),
process-informed consent was utilized, allowing for ongoing renegotiation of participation. Polit
and Beck (2017) assert that process consent “allow[s] participants to play a collaborative role in
making decisions about ongoing participation” (p. 144). Given the nature of this study and the
focus on the gendered nature of albinism—acknowledging the various human rights threats
experienced by persons with albinism—emphasis on empowerment, choice, and space to voice
their lived experiences while determining ongoing participation in the aim of this study was
deemed of critical importance (Madison, 2005; Shimmin et al., 2017; Varcoe, Browne, &
Cender, 2014). Further, because of the potential for unearthing painful, traumatic experiences
throughout an interview or focus group discussion (Shimmin et al., 2017) and my responsibility
as the researcher to “protect the welfare of the participants” (Streubert & Rinaldi Carpenter,
2011, p. 61), NGO-1 staff with qualifications to debrief with participants were identified and
available for follow-up after interviews. Additionally, as a nurse trained in trauma-informed
practice, I consistently assessed participants for signs of trauma and distress, offering to end the
interview and noting when to conclude discussions and transition the topic. During these
situations, Waithera and I consulted on next steps. Of note, while some participants relaying
traumatic experiences teared up or cried, each expressed a desire to continue the interview, citing
“so that no other woman has to go through what I went through.” At the end of each interview or

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sharing circle, Waithera and I debriefed the interview with participants ensuring they were aware
of resources available to them should they want or need to discuss further what came up in the
interview (see Appendices P and Q for debrief forms).
Following interviews with many of the mothers, it was clear to me and my committee
that there were instances where safety and well-being were at a more immediate risk. In these
instances, mothers had explicitly requested help from researchers to advocate on their behalf. As
the original REB did not specify that I would bring to the attention of partner organizations
particular cases where their intervention was needed, we submitted a request for amendment.
With REB approval granted and as part of a larger memo reporting on the research fieldwork
submitted to our partner organization, we presented five particular cases in which their
intervention could result in ensuring the protection of the family’s human rights and well-being.
Each of these cases was attended to by the organization, which was very receptive and open to
feedback.
Confidentiality and anonymity have been maintained throughout data collection, analysis,
and in the final report by using pseudonyms, ensuring not to use any key identifiers that could
give away a participant’s, or their family member’s, true identity. Further, transcripts and the
original recorded interviews, aside from the transcriptionist who signed a confidentiality
agreement, were only reviewed by myself and my committee—otherwise these documents and
recordings remain on the password-protected cloud-based storage ownCloudTM. Particularly due
to the human rights threats and violations that this community experiences, the researcher
recognizes that participant’s information must be kept completely confidential to ensure safety.
While risk exists in terms of potential for triggering a traumatic experience during interviews or

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sharing circles, the benefit lies in the potential for this process to be a “loudspeaker” amplifying
the lived experiences, perspectives, and opinions of women regarding how the national and
global community could best support them and their children with albinism.
Transportation costs were covered for mothers to and from interview locations. When
interviewed outside of their homes, meals were also provided. When interviews took place in
participant homes, gifts of sugar, tea, and water were presented to participants. A meal or
refreshments were provided for key stakeholders when interviewed outside of their home. The
cultural liaison received payment for her work. Her airfare, lodging, and meals were also
covered. Gifts in the form of tea towels, university pens, and Canadian pins for each NGO
partner and involved staff were presented.
Chapter Summary
In this chapter, I have detailed the research design and methodology, scientific quality
and credibility, and ethical considerations accounted for. The intersectional experience of women
who mother children with albinism in Tanzania represents a missing piece in the movement
towards promoting the enjoyment of human rights of persons with albinism and that of their
families. By using a focused critical ethnographic methodology alongside Hudson-Weems’
(2019) Africana Womanism, trauma-informed research methods, and a human rights lens, this
study seeks to centralize the voices and narratives of mothers impacted by albinism. In the
following chapter (Chapter Four), I will begin presenting the findings of this focused critical
ethnography through the narrative of Imara, one participant whose journey provides a key case
study.

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Figure 8. A mother roasts peanuts in one of the Wamama Wanaojali workshops in preparation
for a market.

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Chapter Four: The Case Study
In this chapter and the next, I present the findings of this focused critical ethnography.
Written in an ethnographic style to bring to life the lived experiences of mothering children with
albinism in Tanzania, Chapter Four contains an account of one participant’s story, Imara, as told
to us in a sharing circle and individual interview. Imara’s journey of delivering and raising
daughters with albinism provides a framework for understanding the rest of the stories told to us
by participants and serves as a case study. Imara’s story is complex with intersectional factors
influencing how she and her daughters navigate everyday life, experience health and wellness,
and experience access or threats to their human rights. To attempt to capture elements of a
woman’s experience as a mother of children with albinism, I use Imara’s story as the scaffolding
to this critical ethnography, subsequently layering in the experiences of other women
(participants) whose experiences offer either a counter perspective or reflect Imara’s experience,
thus corroborating the lived experience of mothers impacted by albinism. In Chapter Five, I
follow the key storylines revealed in Imara’s case and illustrate in a thematic style how they
reflect the everyday lives of the other mothers in this study.
The Case Study of Imara
We are in the back of Sarah’s3 Land Cruiser bouncing down the dirt road towards NGO2’s headquarters where the Wamama Wanaojali (“Caring Mothers” in Kiswahili) group in
Mwanza gathers. The security guard at the compound gate clearly knows Sarah well—they greet

Sarah facilitates the mamas’ group in Mwanza. This is a group of mothers impacted by albinism, either as mothers
of children with albinism or mothers with albinism themselves. Further details are provided in this chapter as well as
in Chapter Five.
3

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each other with broad smiles and greetings in Kiswahili. Sarah introduces Waithera and me. We
are warmly welcomed inside the compound—the extension of trust and hospitality by virtue of
our contact’s established relationship. At the bottom of the driveway, we reach what used to
serve as a garage. About ten women are inside, making a variety of goods: roasted peanuts,
beeswax wraps (these replace saran wrap; apparently, expatriates love to purchase this item),
soaps, and beeswax candles. The group is preparing for a market in the coming week in which
they hope to sell a large quantity of their products. For many of these mothers, this group serves
as a vital source of social support, but also provides a key source of income. Sarah tells us that
she has witnessed the self-esteem and confidence in each of these women grow as a result of
making, marketing, and successfully selling their handmade products. As we drive up to their
workshop, we interrupt their banter and laughter as they all navigate the small space, almost
chaotic as they tend to various tasks and sooth crying infants.
Most of the mothers immediately recognize Waithera—they embrace her, welcoming her
back. Waithera worked with NGO-1 about five years ago and helped to form these groups,
recognizing that mothers might benefit from the support of shared experience: All of these
women either have children with albinism or have albinism themselves. Sarah and Waithera
introduce me to each woman. Welcoming hugs and handshakes follow. Waithera builds the
enthusiasm for the purpose of our visit reminding them of the importance of their shared
experience as women impacted by albinism and the power to create change through sharing their
lived experiences.
Imara was sitting down, leaning over a massive pot on a propane flame stirring several
pounds of roasted peanuts. She appeared focused and determined. Sarah organized everyone into

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a circle where we introduced ourselves and eventually formed two groups with a plan of
engaging in a sharing circle with one of the groups that day. Imara joined the group outside and
we listened as each woman shared parts of her story, responding to a question that engaged with
her story in some way. As Waithera and I held space for the stories to unfold, we realized
quickly that this was the first time they were hearing the deeper layers of each other’s stories.
There were sighs, tears, and subtle movements to comfort each other. We were bearing witness
to friendship deepening and broadening as they learned the complexities of their sister’s stories.
Imara’s story captures so many of these complexities—layers of lived experience as a woman
with six children, three of whom have albinism.
Imara begins by telling us that she delivered her first daughter, Aisha, when she was just
14 years old. Waithera relayed to me that Imara,
[R]ecalls when she got the baby she could hear the undertones from the nurses, “Oh,
she’s given birth to an albino.” And because her mother-in-law and step sister were
outside, the nurses called them and told them, “Oh, just in case you think we’ve
exchanged your baby, the baby, here is what she has delivered.” And like for her she was
just grateful because that is what came out of her womb. (Imara, Sharing Circle-3)
Imara went on to explain that her husband’s first question was, “What is this you have delivered?
Did you sleep with an albino?” Accused of having an affair, her husband took no interest in their
daughter. As was true in other participants’ stories, an older woman on her husband’s side of the
family met Imara’s daughter and said, “this child is my sister,” introducing the concept of
albinism as genetic and passed through a bloodline. Once this elder in the family embraced
Aisha, Imara’s mother-in-law “started being friendly and loving” towards them both. Her

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husband’s mentality, however, did not change. He refused to acknowledge Aisha as his own,
much less provide for her or take care of her. At school age, Imara implored him to provide
financial support so that Aisha could attend school. He took no interest: Imara was left solely
responsible for Aisha. To pay for school fees, Imara sold bananas and mangoes, gathering them
herself and selling them while Aisha was in school.
When Aisha was six years old, Imara became pregnant with their second child. Worried
that she would deliver another child with albinism, the husband left her and did not return until
the baby, who did not have albinism, was “sitting up.” Upon his return home, the support and
care he provided was directed only towards his second daughter without albinism—he paid no
attention to Aisha. Imara talked about this motivating her even more to continue to work and
provide for Aisha as she continued selling fruit that she gathered on her own. Soon Imara
delivered their third child: another daughter with albinism. Within two weeks of delivery, her
husband beat her severely—accusing her “of cheating with that albino man up to now.”
Compounding her husband’s anger was the fact that Imara not only delivered babies with
albinism, but also had only delivered girls. Her husband, determined to find a woman who would
give him a son and one without albinism, left Imara with the three children.
At this point in the interview, Imara could no longer hold back her tears. Her friends in
the circle leaned in, the all-knowing sighs mixed with some acknowledging that they had no idea
how bad this part of her story actually was. Waithera and I could no longer hold back our tears
either. Here is a woman, fighting for her place in her home, her community, and her society
simply because she and this husband continue to pass down the albinism gene that they both
possess: “I knew from deep within that this is my child and his child, I did not know what to do.”

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Imara decided to stay with her husband. She speaks to this decision as a choice based not
only on her desire to protect her children and ensure their well-being, but also acknowledging,
“even if I move out, where would I move out to? Like there’s nobody else who’s going to marry
a lady like two kids with, three kids and two have albinism. I’ll be causing more trauma and
more stress to my children because when they ask about their father what will I tell them?”
Some years later, Imara became pregnant with their fourth child: their third daughter with
albinism. Her husband’s response now was to “get myself another wife who can give me boys
and who can also not deliver children with albinism.” Still, Imara resolved not to leave this man
and the little support she received by doing so (e.g., keeping her home, help with the daughter
who does not have albinism). Imara stated in the sharing circle that “even if they live there she’s
single handedly raising her kids. So it’s like she’s married and not married at the same time.”
Articulating the experience of so many women in her position, Imara poignantly stated: “we live
for today and not sure of tomorrow.”
In terms of outside support, Imara’s eldest daughter with albinism, Aisha, is the only one
of her children that received NGO support. NGO-1 sponsored her to attend a boarding school and
then on to a vocational school to learn a trade after graduating secondary school. While Imara
felt that this support reduced the financial burden she experienced, it also created a painful
dynamic between the siblings. Her younger daughters watched Aisha get regular bottles of free
sunscreen, scheduled and routine skin cancer screening and vision care, and, most of all, attend a
quality boarding school where all of her basic needs were beyond met. These daughters attended
day school in their home community, walking to and from each day. Following a security threat,
however, in which a man was found loitering near their home, waiting for them to return from

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school while Imara was working selling the fruit she had gathered for the day, Imara could no
longer leave her daughters for fear of their direct safety. Fortunately, this man requested
information from three of Imara’s neighbors, all women. These women recognized this man as a
threat and strategically occupied his time while one of them went to find the Street Leader who
literally “blew the whistle” for other neighbors to come help. They attempted to detain this man,
but he ran away on foot. Fearing for the safety of her children, Imara knew she could no longer
work outside of her home if it meant ever leaving her daughters behind. A period of extreme lack
followed as Imara was unable to work. She had no way to feed her family anything more than
maize flour. This led her to approach the boarding school that Aisha was attending via
sponsorship: Lake Victoria Boarding School. After some time, the owner agreed, “if you
commit…you will always make sure you bring $50 in a month to at least offset the school fees
then I’ll take in the kids.” Imara worked hard to send her other two daughters with albinism to
the same boarding school that Aisha was originally attending. With her daughters now safe in a
boarding school setting, Imara was again able to work gathering and selling fruit, mandazis (fried
bread), as well as earning a marginal income from the mamas’ group selling the crafts they make
collectively.
Beyond the stress of raising her daughters essentially on her own, Imara was diagnosed
with chronic diseases that require maintenance medications. In her words, this stress “is actually
the route to my [chronic illnesses].” Compounding the stress of her everyday life is now the cost
of medication, which she estimated to be 85,000 TSH (approximately $40 USD) monthly.
Between these costs, she notes that she is in significant debt to the boarding school (3.5 million
TSH or approximately $1500 USD). This debt threatens the safety and education of her younger

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two daughters with albinism. Through tears, she told us that she was now having to make an
impossible choice between school fees or purchasing her own medications. Purchasing the
medication she needs would mean sending her girls back to the day school where their safety is
compromised. Attempting to pay school fees at the boarding school, however, means foregoing
her own medical treatment, risking major future complications. Untreated chronic diseases over
years are detrimental to health, well-being, quality of life, as well as longevity. Her children
desperately need Imara, and more than anyone else, she is acutely aware of this need. Imara
acknowledged that the day schools are no safer than they were when she pulled her girls from
them initially and put them in the boarding school. “But now money, the more I think about the
financial burden the more I don’t know how I’ll offset myself from it…no it’s not safe but I
don’t have a choice.”
Aisha was originally going to a government day school (neighborhood school). At this
school, she was experiencing a lot of discrimination and bullying from other students as well as
from teachers and staff of the school. This was obviously distressing to Aisha as well as Imara,
who felt limited in the effectiveness of her own advocacy as her mother. One of Aisha’s teachers
at this school approached Imara and told her about a school for the blind nearby “that has kids
like [Aisha].” Such schools are generally government funded and have been used as alternatives
for children with albinism. The education in these schools is geared towards the needs of
children who are legally blind, teaching braille, not for students with low vision who, when
provided with proper devices/options (e.g., monocles, glasses, seats at the front and centre of the
classroom, large print books/exams), can read and write just fine. However, given the
discrimination that Aisha was facing at school, Imara decided to send her to this school for the

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blind. Once there, she visited her regularly. This was before she had more children. It is at this
school that NGO-1 found Aisha and sponsored her.
At this point of sponsorship, their journey shifts, in many ways positively. However,
concern exists around involvement of parents. Imara notes that she received a call from the
school for the blind when Aisha was very young (about 7 years old):
[T]elling me, “Ah, your kid got scholarship and she is, she has already left here and they
are in schools in Mwanza.” I was given a list of schools where she could be. And I started
going to those schools, school by school looking for her, [several schools later] when I
went to [name of school] I found her there and asked the daughter, and the daughter
[Aisha] told me they got a sponsor and it is the sponsor who brought them from
Misungwi to the school. So, when I asked the school now the school told me, “Yes, the
sponsor brought them here.”
Once Imara found her, she visited her at the new boarding school monthly. She mentioned her
surprise regarding sponsorship, but her relief that she would be safe and receive an excellent
education was more pronounced:
She learned about the sponsor…a white man…after one year…So now, like for her, she
was happy. First because, initially her child was in a mainstream school but the
environment was not very good. But now this year she is in another better school and she
was very sure in that school she would do better than she would have done in that special
school.
In addition to feeling hopeful about Aisha’s opportunity as a grantee of this NGO, Imara
experienced challenges visiting and maintaining regular access to her now that she had moved

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schools and was recognized as a sponsored child of NGO-1. She describes the various barriers to
visiting Aisha or to having her home for holiday breaks:
Imara: She only knew a sponsor…a white man from Canada is sponsoring kids…For her
she was happy. First because, initially, her child was in a mainstream school but the
environment was not very good. Now she is in another better school and she was very
sure she would do better than she would have done in a special school [e.g., school for
the blind]. But now she says the only problem was every time they would close school
she had to go through the process of getting a letter from the district leader to take her
own child home and that was something that she had to do every time they closed. You
understand?
Researcher: What do you think of that process? What was that like for you?
Imara: She asked herself very many questions. Like, how now all of a sudden my child, I
have to continue justifying that I am the parent? I have to come, have the local leader
write a letter and I take the letter to the district officer to prove that it is my child. I have
to keep reminding… every time I’m justifying “this is my child.” It feels like the power
of being the parent to that child is not there anymore. She says, “you see that process you
know it is expensive…You really needed to make sacrifices and plan ahead of time, to
bring your own child home.” And when she was in the other school that process was not
there…because she was in charge of the child [as she had placed her there herself].
While she expressed feeling positive, thankful, and even reliant on sponsorships for her
child(ren) with albinism to obtain excellent and safe education, there was grief in the separation

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from Aisha as articulated in Imara’s words, “It feels like the power of being the parent to that
child is not there anymore.”
Despite this loss of power and the grief associated, Imara’s story illustrates how poverty,
perpetuating a chronic lack of choice/options, requires continued engagement with sponsorship
models and, further, a willingness to ask for further assistance, an experience that is both
humbling and sacrificial as it may result in her child going away to a boarding school. She
desperately wants her children with albinism to be safe, have access to excellent education, and
experience equal access to health services (e.g., sunscreen, dermatologist skin screening), so “she
says she once approached [the organization staff] and told them about [her other] children with
albinism and they said, ‘no, we are not giving any more scholarships.’ This was in 2013.” For
Imara, reaching out for assistance took courage, humility, and a willingness to face refusal.
Hopeful that her other children with albinism would receive access to what their eldest sister had
as a grantee of an NGO, that is ensuring her education and health needs are attended to, she took
a bold step and asked for what she needed. After she told us about being informed that there
were no more scholarships available, the natural next question was how she managed raising all
of her kids within this context.
Researcher: So, how did you manage…trying to parent Aisha and these other two that
were at home?
Imara: So it was really hard, of course, but now even if they didn’t get scholarships they
were my kids and that’s how I explained to you how I had to start doing business to try to
put them in school. Yes.

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Imara’s resolve as mother and primary caregiver to her two other daughters with albinism was
visceral in this interview—she reached out where she saw the opportunity, but her grit did not
wane when help was not available to her. She kept going, continuing to creatively navigate her
family’s survival. The business she is referring to is selling mangoes, bananas, and mandazi.
This discussion further highlighted how access to health resources such as sunscreen
appears to be directly associated with proximity to NGO/CSO services. When all three of her
children were attending Lake Victoria Boarding School (Aisha NGO-sponsored and Imara
funding the younger two), all three had some access to what the NGOs would bring for their
grantees. The two children attending without sponsorship were dependent on what Waithera
(CL) translated as “spillage” from those who had the sunscreen. Anything left over, her other
daughters would share and use.
This conversation naturally progressed to Imara describing how parenting differed
between Aisha and her other children.
Imara/Waithera: So she says, you know, if you remember when I told you some of the
biggest contributing factors is looking at my kids and feeling they are a bit unequal. Even
my [chronic disease is impacted] most days when I think about some of these things…
Researcher: What are those things?
Imara/Waithera: She says you know even the thought of my children, my child, there’s
no sunscreen. Like a simple thought like that already…because, see for me, I have to start
stressing where to get sunscreen before they realize they don’t have any and their sister
has. And sometimes she would call [the TAS representative] to find out if he has or
doesn’t have, and if he doesn’t have they have to apply no sunscreen and the sister has

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sunscreen…See now from when they went to Lake Victoria Boarding School
…sunscreen…was not a priority in my thoughts then because they would get this spillage
from others. But then even when they are there, I have to think, I don’t have to worry
about Aisha but I have to worry about school feels for the others.
Researcher: I’m curious, too, just between her kids with albinism and her two without,
are there any differences in how she parents? Or parenting strategies.
Imara/Waithera: So you see, all her kids are equal in her eyes. Even when they don’t have
sunscreen they will apply any other lotion that the others are applying. And then she now
has to ensure they don’t go out in the sun. So, it’s expensive of course to keep up with the
children with albinism but it is also manageable. Cause then when they don’t [have
sunscreen they don’t] go to the bright light and all of that.
This part of Imara’s story illustrates the focus around protecting her children from lifethreatening UV rays. The central worry is practical: How will she ensure they have what they
need to prevent skin cancer? Clearly a difference exists between how her sponsored daughter
receives these resources versus how her two un-sponsored daughters access them. She is
highlighting the inequities that exist between her own children.
Part of my research objective is to determine the gendered natures of parenting in the
presence of albinism: how mothering differs from the fathering experience. Exploring this with
Imara illustrated the inequities that exist between spouses/partners. Her response illustrates the
centrality of women and mothers in the narrative around albinism:
Researcher: …how are the challenges different for a woman who has children with
albinism versus for the man?

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Imara: The mother gets challenges of course because the first thing he’ll do is to abandon
you and the children.
Researcher: And his abandonment, what are the reasons behind that for a man?
Imara: For me, it’s because the kids have albinism and [all of our] kids are girls.
Her blunt response struck me—it was so matter-of-fact, an “obviously!”
To conclude our interviews with mothers, we always asked if they had any
recommendations and what resources they would like to see. We ended our interview with Imara
this way, too. She responded with the following:
Imara/Waithera: She says, for me, I think if my children got quality education then that’s
the biggest investment that can be done for me. But also for me, my health, the less
thought I have to worry about these children then I will be able to be more productive to
raise the household. So, basically, her health and the education of her children. Those are
like her key priorities right now because she says like the issue of security it is easy to
deal with the security issue when these others are taken care of.
This response was followed with a raw and vulnerable disclosure of how overwhelmed she
currently is. As I thanked her for her time and the interview, tears fell from her eyes and
Waithera sat closer, wrapping her arm around her. As they spoke in Kiswahili, I stood up from
my chair and sat next to Imara, my hand on her shoulder unable to stop my own tears. They
spoke in Kiswahili for a few moments until Waithera translated the following:
Imara/Waithera: So she’s saying, we have to bring you on board. No, she’s saying you
know raising all these kids alone as a woman, it’s the hardest thing and it’s not easy. And
she’s telling me to imagine it, now the daughter that is in form four, even after form four

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it’s not like it’s the end of her needing money to go on cause she has to go on to like
advanced level, you see? And that also needs money. So, ya. That is really the reason
why she can’t stop thinking.
Reflexive Notes
As my own tears fell at the end of this interview, I understood that this kind of processing
is privileged space. When you are working for survival in your everyday, what does it mean to
take space to share experiences and their shadow stories? What does it mean to be asked, to be
sought after, and to be heard? This was the goal at the heart of this ethnographic study: to bear
witness to the lived experiences of mothers and to hear and record their stories for a broad,
responsible audience. The intention is that Imara’s story and those of her fellow sisters in this
study motivate those in positions of authority and influence to chart a path forward alongside
families impacted by albinism.
Considering Imara’s story as a narrative, illustrating the experience of a woman from the
moment she delivers her first child with albinism, the immediate postpartum moments are clearly
pivotal. Upon delivery, Imara’s first responsibility as a mother is to explain how this child came
to be, how she has delivered a child whose skin is so different than hers, than her partner’s. The
onus is on her to explain, to define, to defend, to protect. She is the one that has carried the child
for nine months, it is her womb that protects and forms their children. It is her body that delivers
such children. Further, for Imara’s, it is her body which delivers girls. The compounding burdens
that women who deliver a child with albinism bear present themselves from the moment the babe
emerges with their white head in the birth canal. The difference is immediate. The questions are
immediate. The blame is immediate. The transgression she stands accused of is completely

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outside of Imara’s control: the judgement and penalty delivered by her spouse, family,
community, and then by broader society. Witnessing within this sharing circle, the level of
shared experience, the all-knowing despite not knowing the particulars of each other’s stories—
the shared understanding of their lived experiences: Yes, this is what it has meant to be a mother
impacted by albinism. The choice to embrace this baby, deemed other and wrong by a society
unsure how to explain such difference, is a radical decision itself. It is a resilient decision. To
utter “this is my baby,” to stake that claim pushing against society’s beliefs and norms, is to
accept ostracism, discrimination, isolation, and the potential of public shaming. This is an act of
radical resistance. As articulated in a later sharing circle on Ukerewe Island, “if parents do not
accept their child, it perpetuate[s] discrimination and teaches the community how to
discriminate/treat their child.”
The moment in Imara’s story where she described choosing to stay with her partner,
instead of leaving their home, highlights the concept of (non)choices that these mothers face. The
word choice is misleading. For a woman facing poverty in Tanzania, survival appears to be the
choice. What does it mean to survive as a single, divorced woman who chose to leave her
spouse, who has daughters with albinism, and who is daily grappling with the realities of
poverty? Any support that her spouse is willing to provide makes a substantial difference in her
economic and social position. To walk away from this support could affect the well-being of her
children, something Imara is not willing to risk. However, her own health and safety remain at
risk at the hands of a violent husband. The concern around fathers abandoning their children and
rejecting their partners or wives, even denying paternity, is far too common. Chapter Five will
explore this theme in more depth, but suffice to say, Imara acknowledged the challenge and pain

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of raising her daughters alone and feeling the deep rejection and failure as a wife from her
husband. Imara, however, never wavered in her commitment as a mother to her children, instead
persevering in the uphill battle of advocating for her children whenever required or potentially
beneficial.
For mothers who parent alone due to a partner or spouse unwilling to accept their
child(ren) with albinism, support is either nonexistent or arrives eventually and in unsuspecting
places. All of the women interviewed in the broader study (n = 26) noted finding such support by
way of a single relative, a neighbor(s), a new partner, or a mamas’ group where other women are
in similar positions. These sources of support were sometimes the only thing preventing an
attack or kidnapping of their child(ren) with albinism. Imara’s example of neighbor women
taking note of the suspicious man looking for her daughters with albinism amplifies the role that
neighbors, particularly fellow women, play in each other’s lives: The bond of motherhood
remains despite difference. This example is a powerful representation of sisterhood.
Imara’s decision-making process around how to prioritize conflicting needs in her home
is again representative of the various (non)choices that mothers confront. She faces the
impossible decision of purchasing medications to manage her own chronic illnesses ensuring her
ability to be present to parent or sending her children to boarding school to ensure their safety.
She cannot have both. From a medical perspective, we know that stress and anxiety directly
affect many chronic conditions. What Imara described is the persistent feedback loop referenced
by so many of the women whom we spoke to: managing their own health and well-being and
that of their children without albinism, all while desperately navigating methods to try and keep
their children with albinism safe. For the large majority of women impacted by albinism, this

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journey is solo. Is it even reasonable to conceptualize Imara’s layered, intersectional options as
choices?
In terms of sponsorship, Imara’s story is representative of a concerning theme that was
discussed with other mothers and key informants: loss of control in the parenting dynamic. These
undertones of loss of power, control, parenting, and relationship with Aisha were expressed
simultaneously alongside gratitude and a request for further sponsorship of her other children
with albinism. As a woman experiencing little choice in her everyday life due to social
constructions of gender, lack of resources, stigma and isolation, agency in parenting becomes
vital to respect.
Access to health services and related resources continues to be a source of anxiety for
mothers like Imara. Her clearly articulated worry and concern is practical in nature and
highlighted the very real lack of sufficient access to resources: access to steady supplies of
sunscreen (particularly when your child is not sponsored), access to regular assessments by
dermatologists and eye specialists, and access to finances that would relieve most of these
everyday concerns. When worry around accessing resources requires most of their energy, little
is remaining for the countless other complexities involved in mothering. When resources are slim
or provided only to children sponsored, inequities between and within families impacted widen.
This is where the importance of government and NGO partnerships are vital to shifting the
narrative and experience for these families. With their dependence on philanthropic donors,
NGOs cannot bear the full burden indefinitely. Mothers know what they need. As mentioned, we
asked mothers this very thing at the end of each interview. Most often, their response was a

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request for capital to invest in business models that would provide them the ability to earn a
steady income as, by and large, they remain the sole breadwinners for their families.
Chapter Summary
This chapter has provided a “first window” or understanding into the findings of this
study, with the narrative of Imara, a mother impacted by albinism. Imara’s narrative becomes the
platform for the storylines featured in the next chapter (Five). Drawing on data from other
participants to explicate how experiences throughout from delivery to young adulthood differ or
echo Imara’s story, the aim is to offer a fulsome assessment of how mothers interviewed
experience having and raising children with albinism in their Tanzanian context.

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Figure 9. Mothers walking with Waithera and I to a sharing circle.

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Chapter Five: Expansion of Key Storylines
In this second findings chapter, I place Imara’s story in the context of data from other
mothers of children with albinism, as well as key informants. This analytic contextualization is
critical to understanding the unique storylines of the mothering experience of women who have
children with albinism in Tanzania. By storylines, I am referring to the main points in the arc of
experience for mothers impacted by albinism. Each storyline is comprised of subplots. In line
with the aims of critical ethnography, ethnographic writing “encourages the advancement of
social justice through research” (Silverman & Marvasti, 2008, p. 446), tending to silences,
injustice, and human suffering (Madison, 2005). Storylines are central to engaging the spectrum
of experiences voiced by mothers in this study, expanding upon Imara’s narrative. Within this
chapter, I present and expand upon five storylines related to: social context; safety and security;
role of nongovernmental organizations; child sponsorships by NGOs; and mothers’ resilience
through the life stages of their children. These storylines offer direct responses to each of the
study’s original objectives pertaining to primary concerns and parenting strategies of mothers
(Obj. 1); access to health and social services (Obj. 2); implications of threats to their human
rights in the everyday (Obj. 3); and factors of social support, poverty, and sociocultural views on
the experience of mothering in this context (Obj. 4).
Social Context: Situating Mothers’ Experiences
For mothers who have children with albinism in Tanzania, the spectrum of hardship they
experience is directly related to the social context in which they live and raise their children. Few
women interviewed experienced partners, in-laws, and communities who openly embraced and
supported them and their child(ren) with albinism. This storyline situates mothers’ experiences

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within their social context, and begins to weave in some of the study’s theoretical frameworks,
including Africana Womanism and human rights, in order to interrogate society’s role and better
understand the context of a mother’s experience (further explored in Chapter Six). Subplots
related to social context include (a) social constructions of gender, (b) urban versus rural settings,
and (c) the contrasting experiences of women facing deprivation versus those who are, even
minimally, resourced.
Constructions of Gender: Africana Womanism
In terms of how gender is constructed within Tanzanian society, interviews with key
stakeholders, including religious leaders, NGO/CSO staff, educators, nurses, and government
officials, along with conversations with Waithera, supported and gave context to how I
interpreted and applied Hudson-Weems’ (2019) theory on Africana Womanism. Formally
developed in 1989 by Hudson-Weems (2019), Africana Womanism considered gender, race, and
class from an African perspective before the concept of intersectionality was introduced—
challenging the hegemony of what had become a largely white feminism. Hudson-Weems (2019)
argued that Black feminism, African feminism, and Walker’s womanism failed to ground their
theories in African culture and ways of knowing that considered “the unique experiences,
struggles, needs, and desires of Africana women” (p. 24). Africana Womanism “embraces the
concept of collective struggle for the entire family in its overall struggle for liberation survival”
(p. 29; see Figure 3 in Chapter Three). This particular storyline of social context and subplots
begin to demonstrate the enactment of Hudson-Weems’ (2019) Africana Womanist values and
perspectives, challenging me as a North American white researcher and readers both in and
outside of the Tanzanian context to reflect on our positionality as we absorb and interpret to

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assess the narratives that flow from this critical ethnography. Women in Tanzania who have
children with albinism experience intersecting forms of sexism and discrimination based on the
babies that they deliver. Mothering and family are central to the role of a Tanzanian woman. To
mother a child is paramount, as articulated by Oyana’s statement: “…deep in my heart I said, yes
I have a child who looks different but I have left a mark in the world. Even if I died at least I
have something.” As illustrated in Chapter Four, Imara experienced the abandonment by her
husband and the shunning by her in-laws because she delivered children with albinism and,
further, all of her children were girls. Imara is not alone. Many participants revealed similar
stories.
After delivering their first child with albinism, neither Tishala nor her husband
understood the condition to be albinism. In fact, it was not until he was six years old that they
received albinism specific education by a mobile clinic. Her husband hoped that their son would
“become darker” after some time. However, with the delivery of their second child with
albinism, his response shifted:
But now the father, he was the saddest man. When he went back home and they asked
what baby has been born he said, “Ah, the same type of kids that she delivers.”
When they went back home [after discharge from hospital] it started: the back and forth
of family meetings…trying to excommunicate me because I’m not a woman enough
[saying] “we can’t continue keeping her, she’s just defiling our lineage, she’s not a
woman enough, she can’t deliver proper kids.” [These family meetings went on for] two
to three years…and eventually, they took me back to my parent’s home.

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The decision that Tishala is not woman enough because she does not produce “normal” (i.e.,
melanated, able-bodied) children represents what her in-laws view as a failure to her gender and
purpose in the family, community, and to broader society. Because of this conceptualization of
womanhood and motherhood, Tishala is ostracized and sent back to her parent’s home: a
decision that would have financial implications for her husband and in-laws related to the dowry
paid. More than half (nine of the 17) the mothers without albinism themselves interviewed in the
broader study experienced this kind of rejection from their partner and in-laws.
Rural and Urban
Ease of access to resources surfaced as an essential factor in child-rearing. This access
was largely dependent upon where the mother and child lived, whether in rural or urban settings.
For example, interviews in Dar es Salaam revealed proximity to the country’s main cancer
prevention and treatment facility: Ocean Road Cancer Institute, Dar es Salaam. Families are able
to bring their children with albinism to this facility for regular dermatological assessment, free of
charge during weekly clinic hours. While this may require a bus ride that takes a couple of hours,
in large part due to Dar es Salaam’s notorious traffic, fewer barriers exist when living in or
around Dar es Salaam.
Mothers interviewed in the more rural Mwanza region were far more likely to struggle to
ensure that their children received regular dermatology assessments. The mothers interviewed in
this region were largely from rural villages originally, and had moved closer to resources in years
following the delivery of their children with albinism, due also to the higher threat of attacks in
more rural settings. Mothers acknowledged mobile vision and dermatology clinics in the
Mwanza region as their only access point for these resources, particularly when their child was

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not in the sponsorship program for education in boarding schools. Boarding schools where
children sponsored by NGO-1 attend ensure that children are well supplied with hats, protective
clothing (i.e., long-sleeved uniform shirts with pants), and sunscreen in addition to regular
dermatology and vision clinics by NGO-2. This access to resources was confirmed by one of the
head teachers, Maneno, in such a boarding school in the Mwanza region: “their specific needs
like hats, glasses and sunscreen, NGO-1 and NGO-2 make their own arrangements to make sure
they come [for screening]. But then [the school] makes sure they use them [protective clothing,
sunscreen, and eyewear].” Mothers on Ukerewe Island noted that “we get lotion from NGO-2…
but this happens every six months. So, if you run out of sunscreen before the six months you
have to wait until the next [clinic] in six months.”
Knowledge of sunscreen and protective clothing cannot be assumed, as became evident
in an interview with Kamaria, a mother with albinism in a village setting about an hour outside
of Mwanza city (she was interviewed for the broader study and minimally included in this
current study). Kamaria questioned Waithera’s claim that they had the same condition of
albinism and both worked in agriculture: As to how her skin is “so soft and smooth” despite
having the same condition that she has, Waithera explored whether she knew what sunscreen
was, her response was, “I have never heard or seen of that kind of lotion.” Kamaria went on to
explain that she was unware of a mobile clinic conducting free services in her area recently.
Waithera noted from her explanation that “she does not get clear or directive information
concerning these services…She was not well informed about the clinics, that is why she was not
there.” This lack of knowledge highlights the barriers that affect how women are able to access

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services and the difficulty that NGOs/CSOs and government services have in ensuring
information dissemination is effective regardless of geographic location.
Engaging local community leadership offers an opportunity to address this missing link.
Street Leaders, local leaders appointed by their neighborhood or block to represent them to
district leadership (interlocutors), are often depended upon to disseminate information to families
from government and health and social services. This process was described in interviews with a
previous NGO staff, Atiena, and a social worker, Glory. However, this communication strategy
is thin. The struggle for access depending on where families live within Tanzania highlights the
counternarratives of women facing deprivation versus those that are resourced (even minimally).
The next section explores such narratives.
Moving from Deprivation to Resourced
Isolation and struggle were common threads in the vast majority of interviews with
mothers. The exception was one participant who herself, along with her husband, were very well
educated (post-secondary and beyond) and gainfully employed. Families suffering serious
deprivation face lack of consistent income, absence of family and community support, and
barriers to or lack of access to health and social services. Families who are even minimally
resourced with one or a combination of the above expressed marked change or differences in
how they experienced daily life. Strikingly, women who were able to identify a singular source
of support, most often in the form of a supportive family member, friend, or organization,
expressed hope, an ease of the burden, and capacity to carry on. As all of the participants were in
some way connected to an NGO, the stories gathered reflect the move from deprivation to

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resourced rather than providing counter-stories of women with and without resources. This will
be further illustrated in sections below related to how mothers support each other.
Rehema’s story illustrates this move from deprivation to resourced. Rehema has one
young son with albinism whose own father and uncle were a part of a plot to profit from a
mutilation attack against him. A man dressed as a woman wearing a Muslim hijab and long dress
posed as a family member and attempted to kidnap the 18-month-old who was in the care of a
“Dada” (in Tanzania a “dada” is a woman who helps around the house and with child care).
Thankfully, a neighbor recognized the baby who was crying and stopped the “man” to inquire
after the child. Realizing that he did not recognize the “woman,” he questioned the attacker and,
noticing the bloody hand of the child, literally blew a whistle to call for help from neighbors. The
attacker had already chopped off one of the child’s fingers. Rehema was experiencing isolation
and discrimination prior to this attack, in large part related to unsupportive in-laws who
pressured her husband to leave or to recognize and utilize the “money you have in your own
house” (referencing the money they could make from the sale of body parts or hair from their
child with albinism). Her brother in-law argued, “Why do you sleep hungry and work so hard
when you have all the money in the world that you need in your house? If you take that
one…and if you just cut a finger you will be very rich.” Without support in her home and now a
husband directly involved in a muti-attack against their own child, Rehema was desperate in the
face of a traumatizing incident. During a visit to the Ocean Road dermatology clinic in Dar es
Salaam with her son, she was looking particularly discouraged and Inaya (Mama Anna), the
chairperson on the Dar mamas’ group, approached her, asking, “Why are you looking so sad?”
After some conversation, “[Mama Anna] told me, ‘you know, there’s an organization called

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NGO-1. Go there and I’m sure you’re going to get help.” NGO-1 offered to sponsor her son and
he is now attending a boarding school in Dar es Salaam as a five-year-old. Later in the interview,
I probed regarding further resources that she currently has, especially now that her child has been
sponsored to attend boarding school. Her response is telling: “I have no other place except this
group. Anything to do with raising my child with albinism, I have never had that opportunity
until I reached out to NGO-1.”
Within this same sharing circle (Sharing Circle-3), there was a synergy as they described
the sense of empowerment they felt as participants in the mamas’ group. Rehema stated, “The
things we’ve been doing as a group has earned us respect in society because this group is a
classic example that if you empower women, we are capable. It’s not like people are incapable.”
Another participant in this sharing circle reflected that “before [this group] I had so much stress,
pressure and fear. But this connection we have and the things we do together keeps me moving.”
This idea of how the connection with other women provides encouragement and hope is echoed
by another participant: “[I am] so grateful because of the support and the encouragement I get
from this group…every time I come…I get encouraged and more hopeful that I have a means to
somehow meet the needs of my children and raise them better.” These quotes highlight how
mamas’ groups have increased capacity through creating a social network and resourcing women
who were otherwise feeling isolated and alone.
Summary of Storyline 1: Context
Social context influences the everyday lives of mothers impacted by albinism. To be a
woman who delivers a child(ren) who is in any way “other” poses several risks to the well-being
of both mother and child. Mothering is central to a woman’s identity within the Tanzanian

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context, illustrated in part by how women are known as “Mama name of their child” (e.g., Mama
Anna). Thus, to deliver a child deemed unacceptable in society’s view affects her own sense of
self and identity as a woman in concert with how her society views her and her child. The degree
to which mothers experience the weight of this reality is dependent upon where they live (urban
versus rural) and how they experience resources in the form of services, community, or family.
Safety and Security: Carrying the Burden
The data is replete with evidence that the safety and security of children with albinism
remained central to mothers’ concerns. Maslow’s Hierarchy of Needs introduced the concept that
only when one’s most basic needs are met is one able to thrive and reach self-actualization
(Benson & Dundis, 2003). Safety and security are foundational. Tanzania currently has the
highest number of recorded mutilation attacks and muti-murders in Africa (UTSS, 2020). In part,
this high reported incidence is due to efforts by NGOs/CSOs to monitor and actively investigate
and report attacks; other jurisdictions may have similar numbers of attacks but not the same
monitoring system.
Mothers in this study knew that if their children were out of their sight, they were at risk
of attack. While fewer attacks have occurred in recent years (with the last murder occurring in
2015), women interviewed expressed fear and detailed how the risk was still very much present.
They cited recent attempts to kidnap or attack their children along with anxiety about upcoming
local elections in 2020 (UTSS, 2020) as reasons for this constant fear. With this storyline, I
outline mothers’ experiences around threats to security, sources of protection, and access to
justice.

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Threats to Safety and Security
In parts of Africa, related to the belief that body parts, blood, hair, and nails of persons
with albinism can bring good luck when used in witchcraft-related rituals, persons with albinism
are hunted and attacked (Brocco, 2016; Cruz-Inigo et al., 2011; Reimer-Kirkham et al., 2019).
Children are most vulnerable to such attacks, leaving mothers anxious about navigating methods
to best ensure the safety of their children with albinism (UNGA, 2017b, 2019a). The routines of
everyday life are cluttered with concerns around how to ensure their child gets to and from
school safely, who are safe people to leave their child with, and how can she navigate work with
keeping such a close eye on her child. Of course, these concerns are experienced alongside
pressing worry over her child’s skin safety; exposure to the sun without sunscreen, protective
clothing, and a hat results in painful, blistering burns and risk of skin cancer. When much of the
work available to women impacted by albinism occurs outdoors (e.g., selling fruit, street
vending, agriculture), the requirement to bring their child(ren) with them to work in order to
ensure their safety poses a direct and significant risk to their child’s health and wellness. Again,
this risk is representative of yet another (non)choice that mothers impacted by albinism are
confronted with. Confirming the representative experiences that Imara shared, mothers shared
several stories of these tensions. The only mother whose experience was different was from a
significantly higher socio-economic bracket, and, perhaps most importantly, whose partner was
equally committed to loving and raising their children with albinism. Concerns around safety,
both physical and health-wise, were not as dire as a result of being a well-resourced family.
Jahaira’s experience exemplifies the complex worries around safety and security. At five
months pregnant with her child, Jahaira lost her partner. Upon delivery of this child with

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albinism, she sought support from her in-laws, as is customary. However, they refused to
acknowledge her son as family, stating “ ‘you’ve delivered a mbuliwmelu [Sukuma for ‘white
goat’].’ I responded, ‘no, I have delivered a child.’ But my in-laws, said, ‘this one, this here, we
do not have these people.’” With her in-laws choosing to refuse kinship, Jahaira was left without
support. When her son was seven months old, a man came to visit her and expressed interest in
marrying her. They began communicating by a phone that he purchased for her. Eventually this
man sent her a message expressing his real intentions: “I actually don’t want to marry you, I
want a part of your child…for further instructions call this number.” Afraid and with very few
resources, Jahaira went directly to the Street Leader to report the threat and seek safety for
herself and her son.
During this time, between 2013 and 2014, there was an increase in attacks against
persons with albinism in the Lake Zone region. With communities and families trying to avoid
being blamed or liable for an attack, mothers and their children with albinism were left to find
solutions themselves. For Jahaira, the Street Leader was helpful. He provided immediate support
in the way of allowing her and her son to sleep at his house in the immediate aftermath and
escorted her to the police station to report the threat. With the case documented by the police, her
own family and community were urging her to go with her son back to her in-laws: “…these
people already paid dowry for you, so you are supposed to go raise that child [with them].”
Essentially, this solution would relieve her family and surrounding community of ever being
blamed should an attack occur. They gave her an ultimatum: “…you go to your in-laws or we
take your son to [a government holding centre for children with albinism].” Her in-laws again
refused them.

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It was in the middle of these negotiations that a man with albinism who had heard
Jahaira’s story offered to help her and her son. Through a series of events initiated by this man’s
support, Jahaira was able to live on her own again, selling bananas while keeping her son with
her at all times. Not long after this threat, she received a phone call from NGO-1 stating that they
had heard about her story and wanted to offer sponsorship to her son who was now just under
three years old.
It was very hard for me. It was painful because I couldn’t imagine how it would be for
him to be separated from me. I took time to even accept the NGO-1 offer but my
neighbors where I was living kept telling me, “this child is better off taken care of than
staying here and being unsafe.” After a lot of convincing by the neighbors, I accepted the
offer…After one month after [he] went to the school, I went to see him and he had
forgotten me.
At this point in the interview, Jahaira was detailing these events of being separated from her son
through tears. Waithera and I listened, trying to hold back our own. The women in this sharing
circle were gathered close, affirming Jahaira’s experience with their own knowing nods and
utterances of shared experience—confirmed as each subsequently shared their own harrowing
stories. Jahaira was encouraged to visit more frequently than the one time per month that she
could afford and manage:
Sometimes on [visitation days] I do not have the means, but I go out of my way to make
sure I go…sometimes he asks me ‘Why don’t you come with my father to see me, why is
it only you who comes to see me?’ To console him, I have to figure out how to go
anytime NGO-1 informs me that it [is a visiting day].

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Separation from her son represents one of many (non)choices that mothers face: a choice
between parenting in the everyday or ensured physical safety.
Sources of Protection
As Jahaira’s story exemplifies, options for protection are both formal and informal. From
interviews with key stakeholders, local leaders (i.e., Street Leaders and District Leaders) have
been tasked with supporting families impacted by albinism within their communities: knowing
which families are impacted, where they live, and attempting to help keep them safe. Much
different than in previous years, when neighbors were helpless bystanders or even involved in
scheming attacks, neighbors have become a vital link in ensuring the safety of persons with
albinism: a final check on spotting potential attackers and, literally, sounding the whistle that acts
as the call for immediate help. In the case of Jahaira and Rehema, their neighbors and Street
Leaders were instrumental in preventing further harm.
Social workers, as regional government employees, seek out connection with Street
Leaders. Because Street Leaders know their own communities well, including which families are
impacted by albinism, they are key to engaging when safety concerns or health related resources
arise. The social worker interviewed explained it this way:
…[F]or example, when the government wants to reach out to them [persons with
albinism or parents of children with albinism], my work is basically to link back to the
Street Leaders because…the Street Leader already knows what homes have a mother who
has children with albinism or a woman with albinism…when the government needs to do
something, even when they need to distribute things like sunscreen or have any kind of

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meeting, they go back to their Street Leaders…they know even if one moved, they will
know who, if there’s a new one… this is really localized.
As the social worker for persons and families affected by disabilities, she expressed a particular
need to follow up with families impacted by albinism due to the safety risks. She explained how
she prioritizes meeting mothers in perinatal clinics and at the hospitals who are impacted by
albinism, ensuring they have her contact information along with education regarding albinism as
a condition. She provided a few examples of mothers and grandmothers contacting her with
concerns around the safety of their children (or grandchildren). In these scenarios, she described
how her involvement initiated investigations, securing the support of Street Leaders, and linking
these families to NGOs and further resources available to them. Of note, she discussed the use of
government holding centres for temporary shelter and safety for children that are deemed at high
risk of imminent danger. Glory stressed that these separations from their family were temporary
and for as short an amount of time as possible. She detailed mothers’ groups for parents of
children with disabilities who can draft a business plan and apply for government loans with zero
interest. She also talked about meetings with nurses and physicians in which, as social workers,
they try to provide sensitization training so that healthcare providers are better equipped to
respond thoughtfully to women impacted as well as ensure they are discharged with key
information in hand about the condition.
Further sources of protection include NGOs such as NGO-1, grassroots organizations like
the Tanzanian Albinism Society (TAS), and neighbors who become watchmen and
whistleblowers when they note suspicious activity. These three support systems will be further
discussed more specifically in the upcoming section on the role of NGOs.

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Access to Justice
Both Jahaira and Rehema’s stories highlight police involvement in response to threats to
security, at minimum to record a statement. Few stories shared during fieldwork suggested that
justice was pursued and actually carried out. Like Imara, most of the mothers had stories of close
calls where their child(ren) was nearly kidnapped or harmed. Rehema’s experience, however,
illustrates how haphazard justice can be in these scenarios. As Rehema relayed, the attack against
her son was documented at the police station immediately following the attack. In the case of the
man that committed the physical crimes of mutilation and attempted kidnapping, the police did
in fact carry out charges against him. When TAS did a follow up some time later, they found that
he had been sentenced to life imprisonment in a national penitentiary. It appeared that justice had
been served for this angle of the crime. However, once Rehema’s sister-in-law revealed that her
own husband (who had already passed away at that point) and Rehema’s husband had actually
schemed together, brothers instigating the attack, Rehema was left with no choice but to report
him to the police. As Waithera translated:
She says, “you know when my in-law came to tell me my husband was involved, I
decided not to blind my eyes, because, you see, I am with this man in the same house as
this child.” So, she went to the police station…to report. The police gave her a letter to
take to the local leader so that he gets an official summoning to go to the police station.
It’s a daring move.
With police and TAS representatives supportive of Rehema charging her husband, he would
have been sent to prison. However, the child, age 3 at the time, ended up playing a pivotal role in
this drama. The child kept asking why his father was crying, why he was so upset. When told

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that he had done wrong, the child begged for his father to be forgiven. While Waithera argued
that this is not typical that a child would have such sway, Rehema said that “because it was
Siwatu’s voice and decision to forgive the father, we all had to…But nothing changed, I
continued living in fear.” Of note, even police were surprised by this decision, asking “are you
sure you want to forgive your husband.” When Rehema reiterated the child’s decision, police
decided to, at the very least, “make sure there was a commitment from him to be the first
protector of this child…from today, officially, if anything ever happens to this child he would be
the first responsible person.”
Within another year, this man was denying paternity, telling Rehema and Siwatu that he
was not the father. With this denial came removing any support for Siwatu (e.g., refusing to pay
school fees, refusing to buy him clothing). Eventually, Rehema and this man formally separated.
This man has never been held legally accountable for his actions. In debriefing with Waithera,
this idea of a child having such strong influence does not appear to be common. However,
resolving crimes such as this at the family or community level has been commonplace (i.e.,
family reconciliation) and was discussed by a frustrated Nia, a human rights advocate for a local
NGO. This is the very situation that NGO-1’s advocacy work has sought to influence: Those
threatening or committing violence must be held accountable and brought to justice in order to
send a strong message to perpetrators (UTSS, n.d.a). I was told that in this scenario, that police
would allow a man who has confessed to the crime leave with no charges, regardless of whether
the spouse and child are the ones placing such a charge, suggests that law enforcement rather
easily relinquishes their legal obligations. Arguably, being in the position of having to charge a

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family member with any kind of crime is an impossible decision—particularly in a patriarchal
society, in which the man of the house is the breadwinner and in the position of authority.
From a Canadian perspective, in situations involving intimate partner violence and any
violence against a minor, charges are laid by the justice system, not necessarily by the family or
survivor. This removes the responsibility of family members placed in such an impossible
situation, and considers risks of retribution, thus protecting victims of violence (Canadian
Victims Bill of Rights, 2015). Judging this situation solely from a Eurocentric, Northern
perspective risks oversimplifying what must be considered about being a single mother in
Tanzanian society. However, it further highlights the contrasts in terms of what women in
Tanzania are able to access in comparison to other parts of the world. Particularly, when a
woman does not have a skillset to bring to the workforce and when she cannot ensure the safety
of her child inside or outside home, we are, once again, faced with the various (non)choices that
mothers face daily coupled with an unregulated justice system (UNGA, 2019b). For example,
Nia reflected on a recent situation in her work as a human rights advocate, where a mother was
faced with an impossible situation: maintaining a cohesive family in which shelter and food was
provided by her husband or reporting him for selling the hair of their son with albinism.
It’s a secret that has never been reported to the police. Legally you cannot forcefully
shave somebody’s hair to sell it…It was so close to the skin that it was creating a visible
scar. And that was worthy to be reported. It is abuse…So you get mothers who know
what is going on but cannot say anything because of the culture of secrecy. They cannot
speak against their husbands…

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This situation demonstrates how provision and protection is not always straightforward. NGOs
and government services must navigate these barriers to justice, getting creative on how to
support families from identifying and reporting human rights violations through to the justice
process and thereafter to ensure families are well resourced and protected.
Summary of Storyline 2: Safety and Security
Mothers with children who have albinism bear much of the burden concerning the safety
and security of these children. As the examples of Imara, Jahaira, and Rehema demonstrate, such
concerns are warranted. Tanzania has legislated particular policies in regards to persons with
albinism and continues to struggle to ensure that perpetrators are held to account and
consequences are made public (UNGA, 2017b). NGOs such as NGO-1 are instrumental in
promoting the safety and security of persons with albinism and have been directly involved in
ensuring justice is sought and perpetrators are indeed held accountable (UTSS, 2020). Social
workers and Street Leaders play key roles in the protection of these families as well as ensuring
resources available actually reach them.
Role of Non-Governmental Organizations: Resourcing a Gap
It is within these complexities where the lack of resources is so clearly exposed that the
role of NGOs/CSOs becomes clear. Women voiced that before the assistance from NGOs such
as NGO-1 and NGO-2, they had very few to no formal resources available to them. For example,
women in Dar es Salaam cited skin care clinics at a hospital in Dar es Salaam that they could
access, but named no other resource. For women in rural settings, resources outside of NGO
support were nil, save for an occasional physician visit that may or may not have provided
albinism-specific care. NGOs such as NGO-1 and NGO-2 have filled the gaps for several years,

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supporting the government as it attempts to address the atrocious human rights violations against
persons with albinism. The role of NGOs in this context, both international and local, have
broadened over the years moving towards influencing local policy and addressing human rights
concerns from a global platform (UNGA, 2016a; UTSS, 2019). This move is certainly evident in
the case of NGOs addressing albinism in Tanzania. Brocco (2015) highlights this NGO attention
to advocacy in his work, particularly in a published photo essay exploring the interactions and
“global flows” of information between persons with albinism and the work of NGOs. From
interviews with mothers in Mwanza and Dar es Salaam, the only resource that they were
regularly accessing not associated with an NGO was Ocean Road Cancer Clinic for dermatology
services. Otherwise, any resource accessed was a direct result of NGOs themselves or referrals
made by NGOs. The following details how mothers access NGOs such as these, the fact that
many health and social services exist as a result of NGOs, and illustrates, per participants, the
significant impact that mamas’ groups have.
NGOs as Resource
Mothers interviewed were clear that without the support of NGO-1 and NGO-2 for key
resources such as education sponsorship, consistent skin and eye care, and psychosocial support
via NGO staff and mamas’ groups, they would, once again, be on their own. Prior to connecting
with either organization, mothers detail not understanding what albinism was or how to take
particular care of their child(ren)’s resulting needs (health-wise). As Tishala mentioned, she did
not receive education until her son was six years old when “some people called us to a
meeting…and we were educated on albinism in 2007” (I am unsure who organized this
meeting—NGO or local healthcare staff). Rehema, responding to the question regarding what

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kind of resources or supports had she received, confirmed, “No, besides this group and the way I
get school fees support from NGO-1…No [I don’t have any] personal support.” In a separate,
rural location on Ukerewe Island, Naima, shared that “I have not received any community
support but from NGO-2.” Location of home was significant in terms of access to resources with
urban mothers faring slightly better, accessing hospitals versus clinics with lay medical
professionals sometimes hours away from their home villages.
Further, both NGOs have assumed the particular role of providing education to healthcare
professionals. NGO-2 has developed a model in which local dermatologists are trained on
albinism-specific care and evidence-based practice. NGO-1 takes every opportunity to provide
HCPs with their Understanding Albinism courses either formally or informally when they
encounter an HCP. This kind of education necessary is best illustrated by the comments of Nia,
an NGO staff member, who herself has albinism, in the following statement:
[When we encounter health practitioners] we tell them about albinism because we have
health practitioners who know nothing about albinism. …We’ve met doctors and nurses
who bring questions like, “I thought you guys don’t die, you disappear.” That is a
medical practitioner. If you meet a midwife that believes that people with albinism
disappear, you don’t expect her to help you out when you have a baby with albinism…
So, when we meet those scenarios we address them by educating them…and trying to
teach them that when you meet this sort of case in your practice, you’re supposed to
address this in one, two, three ways. So that way we assure that that particular doctor or
nurse or midwife will be able to assist. …There’s a huge gap [in knowledge and services
available] regardless [of geographic location in Tanzania].

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Nia went on to describe the various levels of specialty physicians throughout Tanzania,
emphasizing that dermatologists are few and typically serving large cities. Those living in rural
areas are dependent on paramedical professionals, general practitioners, and mobile clinics
provided by NGOs.
A third organization, TAS (the Tanzanian Albinism Society), is a grassroots CSO
established in 1978, run for and by persons with albinism (Brocco, 2015). With minimal funding
from the government of Tanzania as well as international donors, TAS uses its resources to
advocate for the rights of persons with albinism, raise awareness about the genetic condition,
assist in pursuing and ensuring justice following threats or violent attacks, and help to coordinate
health care for persons with albinism by connecting those impacted with available services.
Participants in this study cited TAS particularly in reference to the organization following up
cases following an attack—making case follow-ups after perpetrators are charged and sentenced
(e.g., in the case of Rehema, TAS followed up months later to ensure the attacker was actually in
prison following his sentencing).
Accessing NGOs
NGO-1 has, over its 10 years in Tanzania, become a well-known, well-respected
organization in the country. Outreach has remained a key component of NGO-1’s work
throughout Tanzania, including responding following an attack, and visiting schools throughout
the country to identify where children with albinism are attending school. The first point of
contact to NGO-1 by families has generally been via their education program in which children
with albinism are sponsored to attend boarding schools throughout the country. However, media
campaigns using several mediums including social media, TV, radio, posters, and ads in

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newspapers have brought attention to the issues surrounding albinism as well as awareness to the
services NGO-1 is providing. While about half (n = 13) of the mothers within the broader study’s
sample of mothers with children with albinism (n = 23) learned about NGO-1 after their children
with albinism were offered sponsorship, Rehema’s story stands out. As mentioned, it was
another mother from the Wamama Wanaojali group, Inaya, who referred her to NGO-1 after
seeing her “so sad” at Ocean Road, the cancer clinic in Dar es Salaam where many persons with
albinism receive skin care from dermatologists. Rehema’s son is now sponsored and she is part
of the Wamama Wanaojali group herself. This was one example from the interviews where
mothers demonstrated how they advocate for their families and for each other. Mothers impacted
by albinism share a unique experience, and with limited resources and supports available it was
incredible to witness their generosity and care for one another.
Families access the services of NGO-2, with more of a healthcare focus, via their mobile
vision and dermatology clinics, detailed in the next section. On a small island in Lake Victoria, a
few hours’ ferry ride from Mwanza city, NGO-2 has a beautiful, environmentally sustainable
community centre. Built with persons and families impacted by albinism in mind, the community
centre is for the whole island. A place to gather, to read in the library, to learn about albinism, a
place for the music collective to practice, the sewing group to create, and garden space to grow
vegetables. Walking around the centre, it is an aesthetically inspiring and welcoming place—
unlike much of what I experienced elsewhere. Even in this welcoming space, however,
considerations for protection from the sun had not been fully accounted for, given open air and
large window designs that those with albinism noted caused exposure to sunlight (affecting skin
and eyes). This highlighted for me how difficult it is in a tropical climate especially to fully

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protect persons with albinism. Regardless, it is space open to the whole of the community aimed
at shifting the narrative of albinism on the small island, which it is indeed accomplishing.
Health and Social Services via NGOs
As mentioned above, NGO-2’s key focus is healthcare-related. As such, their mobile
clinics serve or have served the majority of women interviewed in the broader study. Most of the
children receive skin and vision care at clinics in their boarding schools or mobile clinics near
their homes. Nia explained how NGO-2 reaches out to them at NGO-1 to relay dates and
locations of clinics to ensure that, between the organizations, the largest number of persons with
albinism can be reached. In this way, the two organizations coordinate their contacts to ensure as
many people are able to access the resources as possible. This partnership is key in continuing to
move the needle on albinism in Tanzania. Organizations that avoid siloing and instead bring their
expertise to complement other resources ensure the largest impact. NGO-1 and NGO-2 also
coordinate to bring skin and eye clinics to boarding schools where there are sponsored children
with albinism. Sunscreen, wide-brimmed hats, and protective clothing are also provided and the
importance of their consistent use reinforced at these clinics. Nia discussed what families
commonly approach NGO-1 for in contrast to what the organization offers:
Most of them ask for financial assistance. But what we do here is organize, for instance,
free skin care clinics and we invite them over and they come and they get checked by
doctors. That’s helpful. Or we build liaisons with dermatologists that are interested.
There’s also another NGO, NGO-2, and it is centred on health care. We have a close
relation[ship] with them. So, when they do the skin care clinics they even contact us to
find some people for them to go take care of. And, there’s some dermatologists who are

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just simply interested in helping people with albinism. We have one lady, she works for a
certain clinic [in Dar es Salaam]. …she is willing to assist any patient with albinism
and…it’s free. She doesn’t charge.
Perhaps in part due to the lack of education regarding albinism, mothers with children
with albinism, as previously demonstrated, often do not know where to begin in terms of caring
for the health needs of their children. Without nurses, physicians, or midwives who reinforce
after delivery what next steps are, mothers are left in survival mode: faced with incriminating
questions and abandonment by partners, family, and community, only the absolute essentials are
fought for initially. That is, food and shelter. Interestingly, although the social worker
interviewed, Glory, was adamant about services available to women and their families impacted
by albinism, not one mother (of the 26 interviewed) had ever received a referral to or received
services from a social worker. These social services were provided, formally and informally,
instead by NGO-1 and NGO-2 in the form of sponsorships to boarding schools, skin and vision
clinics, and Wamama Wanaojali mamas’ groups. NGOs play a key role in bridging these gaps.
Key to NGO-1’s outreach program, is establishing where persons with albinism are living and
establishing connections to health and social services resources.
Mamas’ Groups
Central to the study findings is the contribution of mamas’ groups, both as a site of data
collection, what was learnt about the experience of mothers impacted by albinism in this context,
and the profound impact these groups were reported as having on the wellbeing of these mothers.
As one mother in Sharing Circle-4 stated, “If you empower women then you’ve empowered the
household.” Empowerment, as one of the key experiences of mothers engaged in the Wamama

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Wanaojali groups, is essential in protecting mothers and their children impacted by albinism.
These groups are supported by a few different NGOs including NGO-1 and NGO-2 and exist to
support mothers impacted by albinism psychosocially, emotionally, and economically. Started
about five years ago, these groups were initiated by Waithera, who was working for NGO-1 at
the time in a consultancy role, and another NGO-1 staff member. Waithera remembers meeting
these mothers individually and realized that each of them were experiencing the isolation,
loneliness, and depravity that so often accompanies the albinism story in Tanzania. Waithera
advocated for the mothers to begin meeting together and engaged another staff member of NGO1 to assist in facilitating. Eventually, Sarah, a Canadian missionary, discovered the group
through various contacts and took on a facilitating role, engaging the mamas in Mwanza while
providing some distance facilitation to the group that had started in Dar es Salaam. Sarah’s
vision was to not only help create a space for women with shared experience to relate, build
relationship, and support one another, but also to come alongside them and develop skills that
would produce marketable items. Sarah recognized the poverty that these mothers faced and
committed to partnering alongside them to develop a small business that could turn that tide,
while engaging them in financial management skills, inventory, marketing, and customer service.
In interviews, mothers were very vocal about their experience as a member of Wamama
Wanaojali and were clear about these groups as a singular source of holistic support, of which
they are wholly invested. In Sharing Circle-3, from the mamas’ group in Mwanza, participants
shared the following reflections about connection with the group.
Sharing Circle-3 Participant: I am more grateful because of the support and the
encouragement I get from this group because of all these things I’ve been through…every

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time I come to the group, I get encouraged and more hopeful that I have the means to
somehow meet the needs of my children and raise them better.
Here, this participant demonstrates how, through her involvement in the mamas’ group, she is
supported and encouraged in a way that increases and maintains her capacity to raise her
children. The support is both social and financial.
Sharing Circle-3 Participant: …before now, I had so much stress, pressure and everything
and fear. But this connection we have and the things we do together keep me moving.
For this participant, the mamas’ group has brought hope by way of social connection as well as
relieving some of the burden that she carries alone. There is opportunity to earn an income
alongside women with shared experience who can offer support and encouragement.
Sharing Circle-3 Participant: The things we’ve been doing as a group has also earned us
respect out there in our society because this group is a classic example that if you
empower us, we are capable. It’s not like we are incapable. And the things we make here
are made by both persons with albinism and parents who have children with albinism and
indicate [to society] that, “yes, they have albinism but, yes, they are making fabulous
stuff.”
This last quote is exceptional. This mother is articulating that the work they have been doing as a
collective has “earned us respect” in their communities. Previously isolated and alone due to
stigma and discrimination, these women experience the exhilaration of selling their own
handmade products to impressed, paying customers curious about their work. These women have
the opportunity to look society in the eye and declare their place. The self-esteem, confidence,
and communication skills that this kind of collective has fostered are remarkable. Learning the

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soft skills of business can change the trajectory of these starter businesses. These women, who
have experienced neglect and abandonment often by their closest family in addition to their
communities, are experiencing, perhaps for the first time, radical acceptance, respect, and shared
responsibility. What could be more empowering for these mothers? Through fieldwork with
these women, it was abundantly clear that they are an untapped resource in terms of advocacy,
communication education, and social outreach. As mothers, they know what their families need.
They know what policy makers, government officials, and NGOs need to know in order to
improve the lives of families impacted by albinism in Tanzania. These mamas’ groups could be
an access point for these stakeholders to engage women, seeking their expertise in their own
lives.
Furthering the narrative that these mamas’ groups are often the sole resource for these
women, Rehema from the Dar es Salaam group responded to the question “Now that your child
has been sponsored to attend school, do you have any other form of support?” by stating the
following: “I have no other place except the group. Anything to do with raising my child with
albinism I have never had that opportunity until I reached out to NGO-1.” Waithera gathered
from this statement how fractured the minimal resources appear to be: “See it’s interesting. Like
even when they go to this Ocean Road [Cancer Clinic], you go for skin clinic but then nobody
cares to make sure you understand the basics.” These basics are often filled in by a woman’s
social network. In the case of these mamas’ groups, the shared experience, pooled resources, and
engagement of NGO-1 and NGO-2 allows for engagement in a knowledge exchange that
otherwise exists in isolation where myths and cultural beliefs about albinism continue to fester.

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Unconnected from NGO-1 and Wamama Wanaojali, Sharing Circle-8 on a small island
near Mwanza city represented women supported only by NGO-2. As a mamas’ group, these
women also acknowledged the impact of their collective engagement with each other. Goma
acknowledged, for instance, the “power in groups”: “For example, we all have our small
businesses and these businesses of course are not sufficient. But I know there’s power in
groups... [we will be more successful] if we can do something collectively for a common cause
to meet the needs of our children.” This group was very entrepreneurial and had ideas about
starting a mill business together—aware that they would be able to produce more grain as a
group than individually. Business acumen exists, but they request capital. Upon my second field
visit, Wamama Wanaojali in Mwanza had started to connect with this group on the island,
seeking to learn from each other and potentially build a larger network. This is directly in line
with Hudson-Weems’ (2019) key characteristic of the Africana woman being rooted in
sisterhood and highlights how participants themselves can steer organizations away from
becoming too siloed.
Summary of Storyline 3: Role of Non-Governmental Organizations
Mothers were clear that NGO-1 and NGO-2 are where they receive the majority of
resources they access or have accessed in the past. Without the work of NGOs and CSOs, the
situation would be far more dire. These organizations provide a spectrum of resources otherwise
unavailable, from education to health care, from awareness campaigns to advocacy and insisting
perpetrators are held accountable. The work of NGOs and CSOs influence policy and continued
international engagement to ensure the enjoyment of human rights by persons with albinism.
Particular to mothers impacted, however, the Wamama Wanaojali group is specific in addressing

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their needs as women, as mothers, and as breadwinners for their families. This particular
approach appears to be unique within these organizations and, based on interviews with the
mothers, could be suggested as a “best practice” within other regions and other countries. These
NGOs should, however, continue to work towards engaging mothers as a resource, asking
questions such as: What are their priorities? What do they identify as needs or gaps in resources?
These women are the experts on their lives and the lives of their children. As demonstrated in
this study, reaching out to them as the experts is both empowering and capacity building.
Sponsorship and Mothering: Responding to Separation
The empowerment of mothers has been influenced by how NGOs engage in the care of
children and their families with albinism. While I did not set out to study child sponsorship in
detail, it was quickly apparent that understanding the mothering experience was not possible
without an appreciation of what sponsorship meant to mothering. Education of children with
albinism has historically been difficult due to lack of understanding on the part of educators and
parents as to the specific needs of children with albinism. For example, as confirmed by Maneno,
a head teacher interviewed, teachers must understand the low vision component of albinism and
ensure children have a seat at the middle front of the classroom, are given large-print textbooks
and handouts or exams, and are given assistance to capture notes from the board or projector.
Without these needs met, children with albinism are not able to engage in their learning and poor
performance is misinterpreted as being a poor student. On top of this challenge is the concern
regarding safety. Walking to and from government day schools is risky to their health (sun
exposure during peak times of the day) and their physical safety. With violent attacks and
various threats to their security, mothers are in a difficult position when it comes to determining

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how their children will receive an education safely. The following storyline details how
sponsorship became and continues to be a response to these concerns with the overarching aim
of understanding how mothers experience this resource which simultaneously causes the tension
of separation from their children.
Government Holding Centres and the Beginning of Child Separation
In response to the rise in attacks against persons with albinism in Tanzania, the
government coordinated an effort to bring all children with albinism to holding centres or “safe
houses” towards the end of the 2000s (2007/2008) (African Committee of Experts on the Rights
and Welfare of the Child [ACERWC], 2016; Pedneault & Labaki, 2019). There are currently 32
holding centres in Tanzania (ACERWC, 2016). During interviews and in informal conversations
with key stakeholders and mothers alike, I became aware of the chaotic nature of this scramble to
bring children to these holding centres. Government schools for the blind and hearing impaired
were typical sites for these holding centres. Initially viewed as a temporary solution until attacks
could be prevented, these holding centres remain in existence. With the aim of providing
immediate protection to children that were being attacked and/or kidnapped at an alarming rate
and in response to international criticisms of the situation (Pedneault & Labaki, 2019), the
government engaged Community Development Officers, instead of social workers with
particular training on family welfare, to assist in gathering all children to central locations to then
be brought to these holding centres. This sequence of events was confirmed by a key informant,
Atiena, who began work engaging with these families during the crisis point in 2008 with an
NGO. Street Leaders were instrumental in this effort, alerting their residents to bring their
children with albinism to a central location on a particular day. From the interviews and informal

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discussions, buses arrived to transport all of these children to holding centres. Affirmed in
Atiena’s interview, in many situations, parents were largely left in the dark regarding this plan.
Research published by Human Rights Watch (Pedneault & Labaki, 2019) confirms this finding
that children were “removed from their families, sometimes with no consultation or consent, and
placed in shelters where they were effectively isolated from society” (p. 10). Documentation was
severely lacking in this crisis response. Key demographics (e.g., children’s names, parent’s
names and contact information, home village) were not routinely recorded. In the months and
years that have now followed, there are several children who have completely lost contact with
their parents. Families were separated, siblings were separated—sometimes going to different
holding centres—with no clear plan to ensure reunion would be the ending. There is now a
generation of children with albinism deeply affected by separation from their families and
communities. Certainly some children have been abandoned by parents too afraid to parent their
children with albinism; however, to end the story there would oversimplify the situation.
Mothers interviewed in this study expressed deep love for their children, often at the cost of any
supportive relationship in their lives. Mothers wanted their children to be safe and to receive
access to the education that could break the cycle of poverty in which so many of these families
are entrenched. Many of these children were not abandoned by unloving parents; rather, they
were either removed at the behest of the government or following the impossible decision by
mothers desperate to keep their child(ren) safe. Unfortunately, safety was something that most
mothers could not guarantee in their homes. To this day, there has never been an attack in
government holding centres, pointing to the basic safety that was indeed ensured. Worth noting
is the pressure that the Tanzanian government placed on local leadership to ensure children with

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albinism were brought to the holding centres. Described to me by Atiena and confirmed by
Pednault and Labaki’s (2019) research with Human Rights Watch, local leadership (i.e., District
Commissioners and Street Leaders) were navigating a government order that, should a child with
albinism be harmed in their communities, everyone in the community would become suspects
accused of violence. Fear of false accusations contributed to this uncoordinated, hurried effort.
In 2013, due to the troubling conditions that NGO-1 had witnessed in their visits to
various government holding centres, NGO-1 approached the African Committee of Experts on
the Rights and Welfare of the Child (ACERWC) to investigate conditions and children’s wellbeing inside the temporary holding centres (or shelters) (ACERWC, 2016). This committee’s
mandate is based on articles 32-46 of the African Charter on the Rights and Welfare of the Child
and was adopted by the Heads of State and Government of the Organization of African Unity
(OAU) in 1990 (African Charter on the Rights and Welfare of the Child, 1990). The ACERWC
accepted NGO-1’s request and carried out an investigation in 2015. In their published report, the
committee details their investigation of the largest holding centre in Tanzania, which is the
Buhangija Centre in Shinyanga (ACERWC, 2016). This committee found that children were
undernourished, ill housed in overcrowded dormitories or tents, lacked sufficient numbers of
books and teachers to ensure their education, and also found alarmingly high rates of skin cancer
among children due to inconsistent attention to preventative measures (i.e., sunscreen
application, protective clothing, wide-brimmed hats, avoiding sun exposure) (ACERWC, 2016).
This report was critical of the centre, and called upon the government of Tanzania to respond
swiftly and decisively to improve the conditions for these children and attempt to “chart a way
forward in collaboration with all stakeholders” (ACERWC, 2016, p. 3).

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Glory, a social worker, talked about holding centres as still being an important piece in
the safety and security puzzle today, but certainly not as a long-term solution. Perhaps her
utilization of these centres as temporary shelters suggests part of a shift in how these centres are
viewed four years following the committees’ report. For Glory, when she needs to remove a
child from an unsafe home or village quickly, she acknowledges the importance of accessing
these holding centres (used in this way as a “safe house”). However, Glory was clear that she
viewed these holding centres as very temporary and only when the safety risk is very high. This
separation from parents and family appears to be viewed as a “last resort” when safety and
security cannot otherwise be assured. The following excerpt from Glory’s interview details this
perspective:
We also work with other stakeholders and specifically the holding centres that exist… In
real situations the parents come and report that they are scared, “I’m worried for my
child’s safety.” At that point we recommend the child is taken to the centre…[during]
election periods most parents are worried. But then after the election period, the family is
ready to bring back the child home when the situation is calm. …We look at it as a
temporary solution.
In an example case provided by Glory, she makes the clear point that an investigation is part of
her process as a social worker: “[I] was really interested in this case and wanted to really
establish if there was a real threat to the child back at home.” She follows up with the child’s
mother, the Street Leader, and the child’s grandmother—seeking to establish the threat and
decide if it warrants removing the child from their home and bringing them to a holding centre
until she, in concert with the community and family, can ensure the child’s safety. Unfortunately,

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this kind of detail was not followed when children were initially brought to the holding centres,
nor was there a plan to ensure families would be reunited once safety could better be ensured.
NGOs’ Response to Crisis
In response to the conditions found in these holding centres, NGO-1 began sponsoring
children to leave these centres and instead attend private boarding schools. These schools were
vetted by NGO-1 and represented a pivotal move away from educating children with albinism in
schools for children who are blind and/or deaf, instead providing integrative education ensuring
proper vision aids and teacher awareness/support (UTSS, n.d.b). In addition to these boarding
schools providing excellent education and opportunities for children with albinism to learn
alongside their peers without albinism, the integrated model countered the various myths and
beliefs surrounding albinism (UTSS, n.d.b). Children without albinism would be exposed to and
engage with their peers with albinism starting at an early age, thus debunking myths reinforced,
in large part, due to minimal or no interaction (UTSS, n.d.b). To date, NGO-1 has sponsored 400
children with albinism (UTSS, 2019). These sponsorships extend from preschool age through to
advanced post-secondary education. Some grantees, as sponsored students are known, have
continued on to graduate level education. In a society that has held rigidly to the belief that
persons with albinism cannot achieve anything, such success in the albinism community has
begun to dissolve these false notions. Staff with albinism at NGO-1 proudly bear the weight of
their success and pour their passion into seeing all fellow persons with albinism equally
successful into their daily work. My experience working alongside staff at NGO-1 was saturated
in this passion, commitment, and steadfast belief that their work and very success was
contributing to turning the tide in Tanzania and across borders. This sponsorship program has

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saved lives and has been instrumental in educating the next generation of persons with albinism
to lead their country into a new, fully integrated and accepting narrative. NGO-1 is central to this
shift. The section below describes in more detail how mothers interviewed view sponsorship.
Apart from sponsoring children in their education programs, NGO-1 is committed to
various other programs and initiatives that further their education, support, advocacy, and
awareness missions. Understanding Albinism is NGO-1’s albinism education that is delivered to
various stakeholders (e.g., teachers, government officials, healthcare professionals, community
leaders) that aims to provide factual information regarding albinism and what persons with
albinism face—dispelling myths and common cultural beliefs about the condition. NGO-1 and
their legal team has worked to seek and attain justice for survivors of attacks, lobbying for
perpetrators to be held accountable (UTSS, 2019). They have lobbied international bodies such
as the United Nations to bring the concerns of persons with albinism to the global stage (UTSS,
2019).
NGO-2 is another major NGO in Tanzania working to end discrimination and violence
against persons with albinism. A large component of their mission is health-related (i.e., vision
and skin screening clinics), but they have robust education, advocacy, and community support
programs that are working alongside persons with albinism to address their identified needs and
amplify their voices on a global stage. NGO-2 has been instrumental in bringing much-needed
health care and health education to hard-to-reach rural areas of Tanzania. Again, filling a gap
that the government has not yet been able to fill, that is, access to adequate health care, which
continues to represent a concern beyond those related to albinism.

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In short, NGOs have been instrumental in stepping into the gaps left by ongoing human
rights violations against persons with albinism. In a nation working towards becoming a semiindustrialized middle-income country by 2025 (Ministry of Science, Education, and Technology
Tanzania, 2018), NGOs have been able to initiate and focus government efforts in this particular
area while also filling in gaps that the government is not yet able to fill. While taking the
pressure off of national and local government, families, as the key recipients of NGO efforts,
must be considered in evaluating such responses. In the next section I explore how mothers
experience the NGO-1 sponsorship program, specifically.
Mothers’ View of Sponsorship
This study has provided a small window into how sponsorship is experienced from the
mothers’ perspective. Mothers interviewed expressed, in large part, relief and gratitude for
sponsorship. Those mothers who were connected to Wamama Wanaojali but whose children
were not currently sponsored, implored researchers to assist their children to become sponsored.
There were, at the same time, tensions expressed by mothers of sponsored children. While the
overwhelming narrative from women interviewed is one of gratitude and relief, there was a
related tension expressed about the separation from their children. These tensions are between (a)
the relief in knowing their child(ren) are safe, receiving a good education, and a corresponding
relief of the financial burden; and (b) the loss of parenting in the everyday, separation from their
children, and barriers to accessing their children and knowledge about their progress in school.
Eclipsed by these tensions, however, is the fear for their children’s safety and the everyday
anxiety about their security: again, representative of the (non)choices mothers face.

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Due to the lack of detailed information for each child brought to holding centres, some of
the mothers interviewed noted that sponsorships were initiated with little input from them.
Several factors could have contributed to this, including the original crisis response that
understandably led to incomplete documentation. NGO-1 stepped into a critical gap to address
the situation faced by these families and ensure the safety of children with albinism, and in so
doing were inadvertently left with the challenge of incomplete documentation. This kind of
uncoordinated crisis response is well documented in global health disaster management
literature, with encouragement for multi-sectoral policy coordination and implementation to
prevent response-related trauma (Aitsi-Selmi, Egawa, Sasaki, Wannous, & Murray, 2015). As
noted above, NGO-1 has continued to initiate and participate in, as evidenced by this very
research, ongoing oversight investigations and assessments of conditions of children within their
programs, in government shelters, and within their communities throughout Tanzania. As an
organization, they demonstrate ongoing evaluation of the situation within the country and within
their own programming. From an upstream, critical perspective, the tensions that have resulted
post-holding centre implementation is a direct result of, first and foremost, vicious human rights
violations against persons with albinism: not the government response or any other NGO
response since. The pieces that the government and NGOs have had to pick up as a direct result
of violent attacks rests solely in the hands of those who would perpetrate and perpetuate such
violence, not those who seek to ensure safety. That said, determining and committing to a way
forward remains vital for all stakeholders as families continue to experience the aftermath of
such trauma years later, noting too that families still experience fear and threats of violence.

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While told in further detail in the last section of this chapter, Tishala’s experience
discovering that her children had been sponsored from a government holding centre provides a
narrative highlighting the very tensions described above. Tishala explained how she had placed
her two sons in a holding centre for safety due to violent attacks near their home. She visited
them regularly once or twice a month and planned to bring them home as soon as the situation
was safer. She explained how she first heard of children being sponsored by an NGO (NGO-1)
on the local news channel. On her next visit, she arrived at the holding centre to be told that her
own children had been sponsored and were now living at a boarding school about two hours
away. Confused and eager to see her children, she struggled to locate the school; in her words, “I
was sent to three different places trying to find the right school.” She attempted again on another
day, found the school, but was turned away at the gate: “I came and found the school…the
school said, ‘no, you can’t see your children today because it’s not visiting day.’ ” It is not
difficult to imagine the pain and frustration that Tishala must have felt that day as mother and
guardian of her children. She continued to explain what felt like a loss of her parenting rights
without consent. When viewed through the lens of the chaotic, crisis response at the time, this
story is representative of the sequelae of incomplete documentation and transition to
sponsorship. Years later, she recognizes the opportunity for her children and reflects back on
sponsorship with positivity while recommending clearer communication and parent involvement
as sponsorships continue.
Boarding schools hosting children with albinism must be extra vigilant to ensure their
safety. Fears around being accused or held accountable for any violence or apprehensions of
children with albinism in their care remains a key concern and is a barrier to mothers accessing

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their children and information regarding their children. This fear-based barrier to accessing their
children must be addressed from a policy and human rights perspective and is further discussed
in the next section as well as in Chapter Seven.
Another aspect noted by the mothers related to siblings with albinism. As highlighted in
Imara’s narrative in Chapter Four, parenting multiple children with albinism in Tanzania is
burdensome. Sponsorship represents the potential of reprieve: safety, education, and financial
aid. However, when not all children in the same family with albinism are sponsored, concerns
around equity in the same household arise. Imara’s story narrates the experience of parenting
around and between sponsorship when multiple children in the home are impacted. Further,
Oyana and Tishala affirmed a move towards family sponsorship regardless of whether there was
more than one child with albinism in the family, stating,
…[T]he mother is the same mother. How you separate children, it’s not proper…we are
the same mothers to all the children, when you support me it’s not like you’re supporting
just me and the child with albinism. It is me and all my other children.
While understandably organization finances are limited, a model of family sponsorship versus
individual child sponsorship could be something to consider, particularly in a culture where
family is so central (Hudson-Weems, 2019). This proposed model of sponsorship will also be
further discussed in Chapters Seven and Eight.
Parenting: Agency and Choice
While sponsorship has brought much relief to families impacted by albinism in the form
of safety and security, financial support, and the provision of education otherwise unattainable
for these families, a parallel experience has also existed. As I started to outline above, alongside

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the relief and gratitude is the pain of separation from their children and the loss of parenting in
the everyday. When the reason behind their need for sponsorship is their very right to life and
security of person, this represents yet another (non)choice faced by mothers. In several
interviews, the concepts of agency and choice were embedded within narratives. Removing the
essential elements of parenting is disempowering. In an interview with one of the head teachers
at a NGO-1 partner boarding school, Maneno, articulated barriers to accessing their children and
the loss of parental contact as experienced by the young girls in his classes. He discussed the
bureaucratic steps that mothers must pass through prior to visiting their children or bringing them
home for the holidays.
Boarding schools hosting grantees of NGO-1 are in a difficult position. Operating in a
society where persons with albinism are still at risk of attack and apprehension, those charged
with providing care to children with albinism, family, or neighbors have expressed fears of being
falsely accused of attacks or kidnappings or of being held responsible should an attack occur. In
isolation of other details, such fear seems logical. With law enforcement charged by the
government to crack down on perpetrators within a historically inefficient and unjust legal
system, false accusations could occur. However, such fears are not occurring in isolation.
Mothers trying to visit their children or keep in contact with them while they are in particular
boarding schools4 detailed various, costly, and frustrating barriers that they face to access their
own children—who may have been sponsored initially without their knowledge (see above

4

From my understanding, the process described here does not apply to every boarding school or holding centre,
rather some within particular regions where attacks have been higher or more recent. The policy appears to be site
specific and not NGO-1 mandated. The encouragement here is for an NGO-wide response that would mitigate the
barriers caused by the process.

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discussion related to government and NGO crisis responses). Echoing Imara’s experience in
Chapter Four, mothers and key informants interviewed in the Lake Zone region of Mwanza
explained that in order to visit their children sponsored at various boarding schools, they must
first approach their Street Leader for a letter confirming that they are indeed the mother of the
child. They then must present this letter to the Ward Officer, obtain another letter of certification,
and then finally to the District Leader who again certifies that the woman is who she says she is.
These letters are then brought to the school for review and a visit is granted or denied. This
process is prohibitive in that it is not only time-consuming, but also costly. Maneno (teacher and
headmaster) detailed this same process within minutes of our interview following an initial
question regarding his interactions with parents, specifically mothers, of the children with
albinism attending his school. He too identified the process as prohibitive and excessive, but,
acknowledged the reality in which the policy exists: Safety for their students is the priority and
liability is a key concern.
In describing this process from the educators’ and boarding school’s perspective, Maneno
proclaimed, “You see for them to know if you’re the parent, that’s the only way they can…I
can’t trust you because…this student they have come here through NGO-1. That’s the parent we
know [emphasis added]. You see now?” This statement validated the sentiment expressed by
mothers interviewed: that they were no longer regarded as the parent, but had been usurped by
NGO-1 staff who held the information and ability to visit the children at any time. In
conversation with NGO-1 staff, this is certainly not the intention; however, very basic barriers to
accessing their children such as cost of travel, loss of a day’s (or more) work, other children to
care for, and distance of boarding school from the home community is felt by mothers acutely.

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NGO-1 does provide travel stipends to some families on an exception basis. However, the
demand is much greater than the supply.
One mother, Jahaira, expressed a loss of agency in parenting following the sponsorship of
her son. Her young son has attended boarding school since he was just over two-and-a-half years
old because of continued threats to his safety. He has now been under the sponsorship program
since 2014. Jahaira notes that he was recently moved to another school following a decision by
NGO-1 to relocate all grantees from a certain school. Likely affected by an overwhelming
workload on the part of NGO-1 staff in the area, Jahaira has been unable to determine what grade
her son is currently in at the new school, stating, “So right now I’m very confused and not sure
whether he is in grade one or in grade three.” According to Waithera, placement exams are often
completed upon entrance to a new school to determine the child’s grade level. As Jahaira relayed
her story, she was very emotional expressing her desire to know more about her child and how
he was doing, tears streaming as she recounted how he didn’t recognize her after his first month
at the school. Her story further made the case for mothers to have easier access to and
information regarding their children as well as the importance of communications between
NGOs and families.
Summary of Storyline 4: Navigating Tensions of Sponsorship
Education sponsorship has provided many children with albinism the opportunity of a
quality education from elementary school to graduate studies in university as well as safety and
security above and beyond that provided in government holding centres. NGO-1 and the
programs they provide in Tanzania have filled a massive gap in services and resources available
to persons impacted by albinism. Without their significant and ongoing response to the situation,

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it is difficult to imagine what the current situation might look like. As with any service, reviews
and program evaluations are important, something that NGO-1 has acknowledged themselves
and have been profoundly open to. This is a key strength of NGO-1 as an organization. With a
decrease in attacks and more NGO/CSO/government resources available, the sponsorship model
may need to be evaluated, something the organization has noted. NGOs like NGO-1 and NGO-2
must be acknowledged as assets the government can continue to collaborate with in order to
build services and resources meeting the needs of this particular population. In the long run, as
local capacity is built, the possibility exists that NGO services may no longer be required, or at
least not in their present form. In the meantime, however, NGO-1 is in the process of reviewing
their programs, restructuring, and responding to the findings in this research study and the
broader project of which it is also a partner. That said, the findings of this study affirm mothers
as the key advocates for their children. As mothers understand best the specific needs of their
own children with albinism, they are in the prime position to advocate on their behalf. Indeed, a
number of NGO staff with albinism recounted how their mothers were much of the reason
behind their success in school and in life. Perhaps as mothers are empowered to play this role in
their family, the strength of the parent-child bond is reinforced—despite such difficult, strenuous
circumstances. The attacks have threatened to further disrupt the family unit: Services and
resource providers are needed to prevent and mitigate this disruption.
Mothering: Resilience through the Life Stages of Parenting
With this final storyline, the preceding contextual themes are drawn together in a close
examination of mothering, first by tracing the experience using a life stages framing, and second
by elucidating the influencing factor of social support contributing to the possibility of resilience

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for the mothers. The following section details the mothering experience from delivery,
postpartum, parenting in the preschool age to school age, and launching their children into young
adulthood. Each stage articulates the journey that I interpreted as one of survival to resilience.
These stories echo Imara’s journey and highlight how slight differences can mean a complete
shift in the experience. This section also explores how this resilience is developed and influenced
by social and familial supports, most especially that of other women impacted by albinism.
Tracing Mothering through the Life Stages
From the moment her infant’s pale, white head emerges from the birth canal, a mother’s
life trajectory is in limbo. A mother delivering a child with albinism is at the mercy of those
closest to her: those assisting in the delivery (e.g., the healthcare team in the hospital, traditional
midwife, or family member in her home), her partner, family and relatives, and the broader
community. Their response will directly affect hers. If the healthcare providers or traditional
midwives are equipped to provide relevant, factual knowledge about albinism as a condition as
well as its genetic origin, she begins empowered—admittedly still vulnerable, but empowered. If
those who deliver her baby greet the child with fear, discrimination, and myth, their trajectory is
far more unstable. Mothers interviewed shared their experiences and provided stories that
expressed the full range of such responses—from complete rejection to acceptance.
Labor and delivery. The labor and delivery experience of mothers impacted by albinism
represents, perhaps, the most pivotal moment in the lives of women and their children. Women
whose babies are greeted with immediate stigma and discrimination instead of acceptance and
information begin a much more difficult journey from the outset. Further, women who
experience immediate stigma and discrimination are much less likely to enter the postpartum

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phase with any useful information regarding albinism as a condition. Of the 17 mothers in this
study who gave birth to a baby with albinism, 14 shared their delivery stories (those that did not
were a part of sharing circles and while they agreed with their co-participants that delivery was
difficult because of similar reasons, their stories were not explicitly recorded). Only three of
these 14 women (~21%) narrated a positive experience. These positive experiences related only
to how they felt treated upon delivery: Was the healthcare provider willing to touch her and her
baby? Were they whispering to colleagues instead of talking to her directly? Did they run away
or abandon her during delivery? Were they kind and attentive in any way? Not a single mother of
the 17 interviewed left the hospital with education regarding albinism as a condition and what
care needs her baby specifically had as a result. Important to recall here is the age range of
children with albinism of the mothers interviewed (see Figure 7), that is, between six months of
age and early thirties. Interestingly, the two women in the larger sample who delivered at home
with a retired nurse (Jahaira) and a Catholic Sister (Magreth) both had positive experiences: The
birth attendants were accepting of the baby and encouraging of the mother. However, similar to
hospital experiences, neither mother left with knowledge regarding albinism. The following
accounts detail experiences in the hospital and immediately after.
Mothers described hearing nurses whisper to each other, display expressions of shock and
fear, literally run away and scream (e.g., Joyce and Oyana), refusing to touch the baby or assist
with routine care measures (e.g., weigh, bathe, and dress the babe as in Asha’s experience).
Asha’s experience was compounded by the fact that her nurse immediately helped the woman
who delivered just after her, cutting the baby’s cord and assessing the infant before returning to
help Asha and her baby with albinism. The cord had not been cut, she had not yet delivered the

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placenta, and her baby was not assessed. This immediate othering on the part of healthcare
providers reinforces precisely what all of the women noted experiencing within their
communities: accusations, rejection, fear, abandonment, and misunderstanding. Amana spoke of
nurses in the delivery room accusing her of sleeping with a white man, and leaving the hospital
with no specific health education as to how to care for her baby with albinism.
The doctors were very curious, the nurses were asking, “are you sure you didn’t sleep
with a white man?” These kinds of questions. When my auntie came to see me in the
hospital, she asked me the same [questions]. I was seen as very evil and promiscuous,
they presumed I went out with a white man. The father didn’t come to the hospital. He
came to see the baby at home…and the minute he saw the child he said, “No, that can’t
be my child.”
This rejection on the part of fathers, as noted in Chapter Two, the literature review, is very
common with the delivery of a child with albinism. The ability to immediately deny paternity
when the baby’s skin color is so opposite their own makes this abandonment altogether too easy
within the context of existing myths and beliefs. Not involving fathers of children with albinism
in pre-discharge education regarding the birth of a child with albinism furthers this potential. The
next section on early years will explore this theme more thoroughly.
Quite the opposite was Penda’s account of her delivery and immediate postpartum
period. Penda delivered on her own in her house while her partner was attempting to get her a
ride to the hospital. Upon delivery, Penda notes that she herself was afraid of the baby, having no
idea why she was white. Her husband, however, expressed the following upon seeing their
daughter:

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He took the baby and he said, “Wow! Today you’ve delivered a muzungu...in our family
there used to be these very light people and they were very beautiful. Now today you’ve
delivered another muzungu.”
This story of initial acceptance by the baby’s father versus the mother was the only example of
this within the broader study. With tears in her eyes, Penda gave much of the credit of their
child’s success to her late husband who had only recently passed away. It was evident that his
support and commitment to continue providing for the entire family enabled their ability to thrive
together, ensuring the best possible care for their daughter with albinism as well. His
understanding of genetics through an African ontology, “in our family there used to be these very
light people,” where family is central was echoed by other participant’s older relatives who made
similar statements of acceptance. In Imara’s story, for example, her mother in-law said, “this
child is my sister.”
In an interview with a nurse and midwife, Sakina and Taraji, in the Lake Zone region,
there appeared to be a recent shift following education provided by TAS, done by persons with
albinism, to the staff at the hospital. Both participants applauded this education. The midwife,
Taraji, shared the following:
Taraji: She says she’s actually had an experience with a mother in the hospital. They
counselled the mother and she accepted the baby. But, she could clearly see from the
family and relative that came that there’s a problem and she didn’t know how now to
support the mother post hospital. She also was not sure, when the child goes home if the
child is going to be safe or not…

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R: And how is the response from…the rest of your team, from your nursing staff and the
doctors?
Taraji: She says for them, of course when they saw the baby first they all said, “Oh, you
have a white baby.” Even for them they know as nurses if they show the shock then the
mother will also have been shocked by the same thing. So for them it’s like they were all
happy and that’s why you do follow up counselling now and then after…So they also
counselled the mother on taking care of the child and how to protect the skin and all that.
R: And was there, was that teaching done just with the mom or also with the father there,
any extended family?
Taraji: The culture here they don’t come to the birth with their husbands. They come with
a female relative. So with this particular case they talked to the mother and her female
relative who was present. So she also counselled them against harmful traditional
practices and she even tried to find out if they have other people with albinism in the
family and when they said no she told them, maybe this mother carries the gene, the
albinism gene.
R: And did they seem to understand this concept of an albinism gene?
Taraji: They don’t get it very well because you see they ask themselves, they don’t have
albinism, they have this child.
This account from Taraji demonstrates how nurses are attempting to engage mothers and their
female relatives who come to the hospital with them. Both Sakina and Taraji described feeling
tension around not knowing how the mother and child would fare outside of the hospital, but
expressed relief in attempting to connect them with the district social worker and ensure they are

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aware of when to return to the hospital clinic for routine care (e.g., vaccines). These routine visits
would also include albinism education—something that is now more broadly implemented in this
particular hospital. When driving to this interview, the NGO-1 staff described this hospital as a
key provider of albinism-related services in the area, praising their recent efforts to ensure
excellence in albinism care. Clearly more hospitals and clinics that share this interest and
commitment to lead the way in albinism care, collaborating and sharing best practices, will
benefit the albinism community as a whole.
In a debrief conversation with Waithera following one of the sharing circles with women
in the mamas’ group, she asserted the following:
It starts in the labour room. I keep saying that…that is the first place where a mother is
told “it’s a girl/it’s a boy.” That is the place where everything else should be very clear:
“it’s a boy with albinism and ABCD.”…If we don’t solve it in the delivery room, we will
not solve it in school.
This opportunity in the delivery room and maternity ward immediately following delivery
represents the prime timeframe to connect mothers with key resources and information. It was
encouraging to hear Sakina and Taraji, nurse and midwife in Mwanza region, describe the
albinism education their hospital and staff had recently received from persons with albinism.
They noted that there is currently a focus on ensuring nursing staff have the knowledge and
appropriate care for mothers impacted by albinism along with prioritizing social services for
these families prior to discharge. Further investigation into how widespread this type of
education for healthcare professionals and staff is nationally would be a helpful indicator of the
level of uptake and potential for accomplishing what Waithera is calling for.

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Figure 10. Delivery room in a rural hospital. There were three beds in a row, separated by the
curtain dividers. Photos such as this illustrate the proximity of women delivering, providing
context for Asha’s story.
Postpartum and parenting in the early years. The postpartum period directly following
this central experience of delivering their baby with albinism is rife with fresh challenges. With
little time to process her own shock and feelings around having a child that looks so different
from herself, a mother now faces the response of her spouse, family, and community less than 24
hours after delivery (typical timeframe of hospital discharge per interviews with nurses and
midwives). In a culture where women surround and support their fellow postpartum woman in
very practical ways (e.g., cooking, cleaning, helping with childminding), this help disappeared
for the majority of mothers interviewed. Instead, mothers faced isolation, questions, and

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accusations—their babies a spectacle in the community. As alluded to above, partners/spouses
abandon mothers who deliver a child(ren) with albinism at alarming rates. As in Imara’s story,
sometimes fathers seek another wife to produce “normal” children for him, while remaining an
unsupportive and, sometimes, violent and abusive presence in their family because of his beliefs
around albinism. As mentioned previously, for Amana, her child’s father simply denied
paternity, leaving her in a position to parent alone. Knowing that she needed support, she brought
the situation to her brother in-law:
Amana approached her brother-in-law and he said they will call a family meeting to
discuss the issue. In that meeting this guy who had fathered her child said in front of the
brother, “no, I have never had sex with this woman”….After this meeting she never again
made an effort to reach out to the husband’s family. Instead of that whole fight, she
decided to be on her own as she’s always been and raise the child alone.
Amana was well acquainted with figuring out how to support herself and instead of enduring
more scrutiny, baseless accusations, and impossible demands for proof, she dropped the issue.
As an orphan growing up with extended family, she had had to fight for her own survival
already. This did not appear to be any different.
Tishala’s experience was similar. However, her in-laws sought to excommunicate her
from the family. Here, she describes delivering their second child with albinism:
When the second child was born with albinism...the father was the saddest man. He went
back home and they asked, “What baby has been born?” He said, “Ah, the same type of
kids that she delivers.” So, when now they went back home it started the back and forth
of family meetings and same things, trying to excommunicate her because “she’s not a

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woman enough and we can’t continue keeping her; she’s just defiling our lineage; she’s
not a woman enough, she can’t deliver proper kids…” Eventually, they took her back to
her parent’s home.
Perhaps most difficult to grasp is this accusation of “not being woman enough” by delivering a
child that is perceived as “other.” As will be further described in Chapter Six, Hudson-Weems’
(2019) theoretical framework of Africana Womanism notes how central family and childbearing
is to the African woman’s experience and existence. So much of her value lies in her nurturing of
a family. One imagines that being accused of failing to do this “successfully” would be
devastating to any woman. However, the resolve of both Amana and Tishala, indeed of all the
mothers interviewed, to move forward with their child(ren) exemplify the tenacity and resilience
that mothers require daily in choosing to raise their children with albinism.
As researcher, it was fascinating to hear mothers explain strategies to convince their
partners or family to accept them and their child(ren) with albinism. The creativity required is
astounding. For Akina she describes her husband being “really shocked and then later was fine.
Today they are very together and they do everything collectively.” Having not heard this kind of
shift before, I asked, “And what do you think changed for your husband. He was shocked at first
but then what changed?” Her response was clever:
So the husband’s [family], when they come they are very, very fair. It’s only hair that is
black. So for her even if she knew nothing about albinism she told him “you see, look at
your family. You are all very fair so it is very clear that this really came from your end.”
And that’s how he somehow got convinced.

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As demonstrated, getting their partner on board appears to be the most important factor in the
early stages. Because it is so easy for men to blame their wives as the one whose body forms and
delivers their child, getting him to recognize “that this really came from your end” is an
important method (Akina). While genetics are not widely understood from a biomedical
viewpoint, the idea of lineage and bloodline is. The ability to point to either a relative who had
albinism or the delivery of “very fair” babies on the father’s side would open the possibility of
this child being theirs, not only hers.
Of the 17 women interviewed who had children with albinism, only 41% of fathers
represented in this study (that is 7 partners of the 17 women interviewed who have children with
albinism) stayed, representing various levels of involvement and support, from fully invested, to
barely acknowledging their child with albinism. When facing poverty and the lack of resources,
even minimal amounts of support make a meaningful impact. Regardless, these men are the
exception. Russom’s husband not only stayed, but accepted his daughter with albinism. This
embracing left him in a position to defend his daughter and wife in his community:
So you know now because people were still talking in the neighborhood and the husband
goes out to drink. So every time he would get into fights with people because they are
trying to tell those lies and stuff like that, he was very defensive you know because he
already accepted this child and people tried to convince him otherwise. So he would
come back home and tell her a warning. “The way people are talking here you have to be
very protective of the child because we do not know the good and the bad people here.”
So made the resolve that her child would only be seen either when she goes to church or
when she goes to clinic. So she locked the baby in. Even with the clinic, she spoke with

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the nurses and told them, “me and my child will be coming in the afternoon when there
are no crowds of people. So because it’s hard for me to already differentiate who is the
good person in the crowd and who is a bad person…”
Russom made the decision to “lock the baby in” her house for protection. As a teacher herself
and needing the income, she had to navigate how to manage keeping her child safe while being
away at work, as observed in Imara’s story. She goes on to describe trying to hire security guards
to help keep her safe, but they were not trustworthy. This difficulty to “differentiate who is the
good person in the crowd and who is a bad person” highlights the level of alert that these
mothers must be on at all times. Russom describes how her daughter was born at a time when
violence against and killings of persons with albinism were on the rise. Her fear was based on
current events. Her solution was as follows:
…[N]obody she could trust and nobody she could get to take care of the child, she
decided to start going everywhere with her child when she was as young as three years…
she would go to teach with the child. She would spread a blanket next to her and teach
other kids when the baby was there.
Russom was lucky to find support in the head teacher at the school she taught at. This head
teacher advocated for Russom, requesting that her colleagues have patience and grace with her,
noting the difficulties for families with children with albinism in Tanzania at the time. She
requested that as a team they make adjustments to support Russom at work. However, Russom
articulated the sacrifices made in bringing her daughter to work in part by stating, “she realized
the baby would be so tired at the end [of the work day]…even productive wise and workwise she
started noting it was affecting her output. And, of course, the way the baby was also suffering

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too.” These tensions were a direct result of the risk of violence that persons with albinism face in
Tanzania, especially during that time and is, again, representative of the (non)choices
experienced by women impacted.
These early years were also illustrated as confusing in terms of caring for the health of
their young child with albinism. With not a single mother entering the postpartum period
knowing what albinism is and the healthcare implications, each of them described a period of
trial and error, eventually, sometimes not until the child was much older, receiving some level of
health knowledge from an HCP. This encounter, however, was most often coincidental, meaning
that mothers were bringing their children to a physician for a different purpose or were
approached by an HCP or organization themselves. Prior to these more formal encounters, many
of these mothers talked about utilizing traditional knowledge shared in their communities, such
as applying various oils to their child’s skin for protection and realizing that their skin burned
when in the sun. Tishala’s experience highlights this stage and echoes the experiences of a
number of other mothers interviewed:
[W]hen raising the child…most of the time she just applied the regular lotion. And then
she noticed [he had] irritations on his skin, so she decided to use the cooking oil. She
would boil the cooking oil and then let it cool, then apply. But even then he started
getting sores on his head that had pus…So they would break [antibiotic] capsules and put
the capsule powder on his wounds cause they were really bad… she said that one would
heal and then the other one [would appear]. So around that time some people called them
to a meeting…someone called and they were educated on albinism in 2007 and it is in

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that place they were told like you should go to [city hospital] to collect sunscreen.
There’s someone who provides sunscreen there for such kids…[He was] six.
Eventually, all of the mothers interviewed had an interaction with a physician or
organization that recognized the condition as albinism and provided education and sunscreen to
them. However, this rarely seemed to include education related to vision and eye care. As
confirmed by Oyana, who did not receive such education until her son was seven years old, “No,
the doctor just talked about the skin care and nothing about the eyes.” With now well-established
organizations like NGO-2, these experiences are shifting with the increase in mobile clinics and
organizations working together and alongside local authorities to identify new families impacted
and provide early access to education and health resources.
Parenting through the school years. These early years are representative of a number of
initial challenges that mothers with children who have albinism face. However, the challenge of
education and parenting their children throughout these school ages brings fresh obstacles.
Mothers become key advocates for their children as they enter spaces where acceptance has been
the exception and not the rule. Most of their children experienced teachers who misunderstood
their condition entirely, forcing them to play outside under the sun, not understanding their low
vision, and/or failing to provide safe spaces socially and intellectually for them to learn. Not only
are their children undergoing the typical developmental stages/milestones from school entry to
young adulthood, but they are navigating a society that has not understood them and still does
not quite know how to include them. According to stakeholder interviews, focused campaigns to
provide albinism-specific education to teachers throughout Tanzania is hopefully beginning to

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shift teachers’ perspectives as they become more aware of the specific health and vision
requirements for their affected students.
The first concern at school age voiced by mothers was how to ensure the safety and
security of their child(ren) while at school and in transit to and from. The next worry was about
how to pay school fees for their children, regardless of school choice (i.e., government day
school or boarding school). Recognizing that most of the participants in this study have children
who entered school during tenuous times in terms of violence against persons with albinism in
Tanzania, an alternative to day school where safety was not guaranteed was to bring their child
to one of the government holding centres which functioned as a boarding school. This alternative
represented a difficult choice: near guarantee of safety but separation from parents and family.
Bringing their children was a sacrifice and, for the mothers in this study, had nothing to do with
not wanting to parent their child(ren) with albinism; rather, it had everything to do with
navigating raising a family and ensuring safety and security for their child(ren). Mothers
articulated countless ways in which they explored creative pathways to keeping their children
safe while trying to ensure they receive an education. Of note, mothers recognized “quality
education” as the key to their children getting out from under the oppression and discrimination
they experience, as well as the gateway out of poverty.
As described in Chapter Four, Imara’s explanation of bringing her daughter to a “special”
school for children who are blind and/or deaf in the hopes of ensuring safety and a more catered
education to her particular needs highlights how mothers advocate for their children. Further, her
case also emphasizes the impact when not all children with albinism within a family are
sponsored by the NGO to attend this “quality” education. For Imara, the experience of parenting

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one child sponsored by NGO-1 and two other daughters with albinism not under sponsorship
highlighted an important tension to consider regarding siblings, one that needs further study. Her
difficulties finding a suitable school and making the payments were also echoed by other
participants.
Russom, as a teacher herself, explained how she navigated first bringing her daughter as a
toddler to work with her to ensure her safety and then bringing her to attend this very school
herself once school age for the same reason. She notes that because her daughter had become so
used to being in that environment, playing and interacting with the students, the transition to
becoming a student was very difficult for her. “It was very hard for her to differentiate when it’s
learning, that transition. There was no home to school because school was home for her.”
Russom described her daughter trying to find her during class time, disrupting her own class and
other classes in the school to do so. During one particular incident, this disruption resulted in her
daughter’s teacher sending her to stand outside as punishment. This was despite Russom
attempting to inform her daughter’s teachers about her condition (e.g., sitting at the front of the
classroom, not being in the sun). Struggling to determine a way forward that would be safe for
her daughter and ensure she could maintain her own job, she trialed sending her daughter to
another school close by. However, for safety, she had to walk her daughter to and from school
every day—something that required her to be late to her own classroom some days. Her husband
soon lost his job and paying for school fees became a serious struggle. There were times that the
school would simply send her daughter home mid-school day by herself without alerting her or
her husband. Russom stated how “she worried that if anything happens to her this time she’s sent
unaware then where does she start? So she talks to the school but it doesn’t seem they get that

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point.” Further, her daughter is very “outgoing and a friend to everybody.” She says, “Of course
as a parent you would not trust people. Still you have to still be protective because as much as we
think things are better the violations are still going on.” The solution for Russom is to attempt to
earn more of an income to support her family—2 children in university, 2 in secondary school,
and her young daughter with albinism in primary school—in the hopes of eventually being able
to send her daughter to a quality boarding school. On top of her teaching job, the mamas’ group
she is a part of has taught her how to make soap, providing an extra source of income:
…Now she says for sure the soap making… gets some little money that helps her get the
daughter going for the next day. And also the income they get from this group somehow
pushes it. Of course it’s not enough… everybody is still getting a share from this little
income that she has.
To this point about earning more of an income, this is directly related to the support of NGOs
making Wamama Wanaojali possible. Russom, however, stated that even with this support and
“economic empowerment…the support is still not sufficient because they still have…routine
needs…they’re not [solved] today and tomorrow you don’t need [again]…but they are still
grateful for the support that they get.”
For Amana, “her biggest thing, of course, is the daughter has no access to that quality
education,” echoing that of mothers whose children are not currently in a sponsorship program or
able to afford sending their children with albinism to boarding school. This comment was made
during the first visit to Tanzania for fieldwork. In the follow-up visit, I was able to connect with
Amana again. She reiterated her desire to see her daughter in a safer school where she could
receive a quality education. To this point, Amana shared their recent experience of a kidnapping

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attempt as her daughter was approaching school one morning. After walking her nearly all the
way to school with her daughter, as she does daily, she waved goodbye a few blocks away and
rushed to her own job. During this particular day, a man was waiting outside the school,
approached her daughter, and attempted to lure her into his car. Thankfully, a teacher spotted her
daughter and ran outside to call her name, interrupting the attempt. Amana was immediately
called to come back to the school. For Amana, the exhaustion and terror of being on constant
alert, even when she is quite sure her daughter is in safe hands, appears to be overwhelming.
Trying to earn an income to support the rest of her family while balancing having to monitor her
daughter’s safety so closely poses a near-impossible task. Importantly, this attempt occurred in
2019—meaning that risks and concerns related to safety are indeed current. Amana describes
this anxiety and stress here:
And even for her, if she didn’t have to take the child morning and evening to school, she
can’t even manage to look for a job that is a working job because she has to somehow be
there for the child to take them to school and bring her back. They struggle a day at a
time…And now that she’s going to just a regular school she practically has to take the
daughter, wait nearby until the school is over to take the daughter home.
On top of physical safety concerns, her daughter is also facing bullying and discrimination in the
school. Amana describes how “the kids in the school are so, are very discriminating. Sometimes
they take her glasses, they take her shoes. Like she can see a lot of stigma. So she’s really not
sure of the safety of her child.”
As referenced in the previous section on mother’s experiences of sponsorship, Tishala’s
experience of placing her sons in a government holding centre followed by an NGO sponsoring

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both of them to attend private boarding schools illustrates the complicated nature of parenting
during this time in the Tanzanian context. The following expounds on Tishala’s experience after
locating the boarding school they were sponsored to attend. She went on to tell Waithera and I
that her youngest son became ill quite soon after he had moved to the boarding school and was
hospitalized, without her knowing. He died in the hospital without his mother knowing of his
illness. She learnt of his death from her estranged husband. Surprised to hear from him then at
all, she thought he was playing a cruel joke on her by giving her such news. To investigate
herself, she phoned the guard at the holding centre whom she had become close with throughout
her children’s time living there. She said from the moment he answered the phone she knew her
son was gone: “Oh, Mama Jabori. We are so sorry about the loss of your child.” Her pain and
confusion is captured in her questions: “how can this be? Why did they even know when my
child got sick, why nobody cared to inform me and tell me so because [I am not too far]? I have
gone there many times looking for my children. Why did nobody call me and tell me to come
take care of my child?’” She wonders about litigation, but sees that as adding pain. She shares
her traumatic story with us with the hope of change: “[I] pray that, yes, my story should be used
to make sure any other mother or parent [doesn’t] go through what I went through… I wish it is
me who saw him die rather than someone else because then all this being told I still have so
many questions that are not answered.” This loss is offset in part by the success of her older son,
who stayed in the boarding school and now, nearly ten years later, has just graduated from high
school and has plans to attend post-secondary education. Her huge smile as she told us about his
achievements told us how proud she is of her son. Somehow she seemed able to hold in one hand

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the terrible tragedy of losing the younger son and in the other celebrate with gratitude the success
and opportunity that the remaining son has experienced.
Russom and Tishala’s stories highlight the tensions and (non)choices that these mothers
face as well as the consequences of the dire human rights situation in Tanzania during this time
and the resulting responses launched to provide support. School age brings complications.
Mothers are faced with how to ensure their children are safe and secure when they are out of
their sight—balancing ensuring they are in school safely with having to work odd hours and
away from them in order to pay the school fees (e.g., gathering fruit to sell on a street stand as in
Imara’s description). They have to advocate on behalf of their children, often not knowing much
about albinism themselves in order to do so adequately.
Transition into young adulthood. Mothers recognized quality education as the key
necessity for their children with albinism to make a way for themselves in the future. This was
true for mothers whose children were currently under a sponsorship program as well as those
who were struggling to pay school fees for government day school. Of note, President Magufuli
introduced fee-free basic education policy for primary education in 2016 (Ministry of Science,
Education, and Technology Tanzania, 2018). This policy change is a promising shift towards
achieving their ambitious 2014 Education and Training policy outlining key education goals to
be reached by 2025 (Human Rights Watch, 2017; Ministry of Science, Education, and
Technology Tanzania, 2018). However, while outside the bounds of this current study, the
discrepancy between this policy and stated family experiences of still struggling to pay school
fees raises questions and needs to be further assessed. This lack of access to safe, quality
education was a key barrier in participants’ children successfully completing primary school. To

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this point, for children of participants transitioning from school age to young adulthood, whether
returning home or proceeding on to post-secondary education, success was dependent upon
experiencing this access either via parents or sponsorship from an NGO. It is helpful to set up the
current state of education within Tanzania, based on percentages or numbers of students
attending primary, secondary and post-secondary education within Tanzania (recognizing that
these numbers do not differentiate based on geographical location). Data from the Ministry of
Science, Education, and Technology Tanzania (2016) cites that primary school net enrolment
was 84% with “more than 70% of the primary school leavers transit[ing] to secondary education”
(p. 3). Post-secondary attendees have “more than quadrupl[ed] over the past decade” with 40,000
in 2005 to approximately 200,000 in 2015 (p. 3). While these numbers are encouraging, these
statistics do not include students with disabilities. In the same document, the Ministry of Science,
Education, and Technology (2016) offers a critique of the current system. With an estimated
400,000 school-aged children with disabilities, “47,783 children are registered in primary and
8,778 in secondary schools. This leaves a large out-of-school population of the most vulnerable
children” (p. 38). Named in the list of disabilities considered, albinism appears first. With a
commitment to include questions related to albinism on national censuses, statistics regarding
education could be more specifically tracked in the future.
Within the broader study of 26 mothers interviewed, four mothers interviewed have
children either close to secondary school completion or recently graduated, while six mothers
had children already in or graduated from post-secondary education. These mothers expressed
hopes and concerns around how they would now transition back home, to a workplace, or to
university. Comments were made about marriage and family, earning an income, and qualifying

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for post-secondary education or trade/vocational school. Comments were related to ensuring that
their now-grown children with albinism would be able to transition well into adulthood. Mothers
spoke of encouraging their children to focus on their studies in such a way that guarantees future
employment and the ability to provide for themselves. As a grantee of NGO-1, the NGO
commits to funding education from start to finish—including as much education as they would
like to do and qualify for. Mothers like Jiona spoke with great pride as she shared that her son
was now in university, stating the following:
Yes, he’s in the University of Dar es Salaam…the community was amused because…
every person who gives birth to a child [who is] different, there’s always whispers and
talks around the community. But now, [my] son has this personality that is so, he’s very
social and interactive and somehow walks around it.
This idea that her son “somehow walks around it” speaks to the resilience that her son has—
empowered to exist fully regardless of stigma, something that Jiona surely helped to instill in
him: “She says she gives him the love of everybody that he never got from everybody…there
was no debate: he is her child and she can take care of [him] without depending on anyone.”
Tishala’s son was in his last semester of secondary school when I interviewed her. While
so proud of him, she was concerned about him moving home for the summer as he waited to
determine if he was going to university or a trade program. With her one-room home, she was
worried what it would be like for him living with her and his younger half-siblings after being in
a boarding school for most of his school years. She was unsure if she could manage providing for
the whole family and assist him to prepare for life after secondary school.

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Imara voiced struggling to see Aisha fully trained as a seamstress but unable to find
consistent work. While trained as a seamstress, Aisha received no formal training in how to start
a business of her own. She has had no luck getting hired by other dressmaking shops. Currently,
she is now living at home with Imara, helping with her younger siblings and relying on word of
mouth from the Wamama Wanaojali group to take custom sewing orders.
In a post-interview debrief with three NGO/CSO staff, including Waithera, after the
interview with Kamaria in a remote, rural setting, one of the CSO staff made an important
comment related to the differences between men and women with albinism. He said that for a
man, safety remains a concern, but he has an ability to fight back and assert himself in various
ways in life that will serve as a protective mechanism, including marriage. All three of them
agreed that for a man with albinism, marriage does not pose a risk. They have the ability to
choose whom to marry and maintain the status of male provider in their homes. For women with
albinism, however, relationship and marriage actually poses a risk:
...[T]he security for men is not so much a problem. But for women the situation is
terrible. Why? Because women are easily cheated by men…they do come for…getting
married…it is very difficult for the woman to know that this is really, is meant for me to
be his wife…
It is on this point that data from mothers with albinism themselves interviewed in the broader
study have informed my interpretation in terms of what mothers of daughters with albinism are
trying or will be trying to help their daughters confront about the experience of women with
albinism. For Zahara, a mother with albinism herself, she was with a man for a number of
years—he fathered all three of her children, all without albinism. Zahara looked down as she

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said, “He left me when I had the three kids and married another woman who is educated and not
a person with albinism.” She has since been raising her three children with no support from him
in any form. Living with her sister and her husband has brought several challenges as she feels
like a burden to them and feels aware that her brother-in-law does not wish to continue sharing a
home with her. As a woman with albinism she shared poignant insights describing the various
barriers she must navigate because of her society’s false beliefs about albinism. She talked about
her community members’ belief that people with albinism aren’t capable of anything: “you can’t
do this, you can’t do that…‛you can’t cook,’ ‘this one cannot even give birth.’” She described
how deflating this is to one’s sense of self. Further, as a woman with albinism she talked about
how men are curious “how is she?” Explaining that they want to know “how is she to sleep
with?...So they will come try getting into a relationship with you…and you accept that. They will
sleep with you [and] go tell others.” Here she expressed the impact on your dignity as the gossip
spreads around your community: “you see from the beginning they were just coming to see how
you are…So even as you walk, people know how you are—your dignity is shattered.” Zahara
recounted how she felt dismissed regardless of how she attempted to support herself and her
children.
So you see even when you get out of the house and want to really make ends meet [like]
any other mother, you will go out there, they will do all those things to you, they will say
all those things to you, you have the business, you have the brain, you have the idea and
you are out there trying to do it but they won’t even buy from you. You see? So as much
as you try to improve yourself, first your dignity was already shattered…at the end of the
day you become this person who tries everything and succeeds in nothing…And that’s

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how you find our lives as women with albinism are very miserable because then you’re
discriminated at all levels...
As a woman in her thirties, Zahara is well aware of the challenges a woman in her position faces,
particularly when she has had little opportunity to pursue her own education. The picture she
illustrates is bleak and unadorned. Her reality is one that she and her fellow mothers in the
mamas’ group are trying to shift for future generations. Zahara went on to discuss in the
interview how her dignity has been elevated once again because of her participation in the
mamas’ groups and the opportunities it has provided her. Mothers raising daughters with
albinism in the Wamama Wanaojali and other mothers’ groups benefit from shared experiences
such as this. One of the mothers with albinism, Goma, when I asked if the group would prefer to
interview separately as women with albinism and mothers of children with albinism, declared,
“you are our mothers and we are your children,” indicating their desire to share together. Further
discussion about the impact of these mamas’ groups is presented below.
Survival to Resilience: The Impact of Spiritual and Social Support
For many of the mothers interviewed, poverty and the struggle to provide for themselves
and their families was already a part of their personal narrative: Women are surviving from one
day to the next. Once they delivered their first child with albinism, the intersectional experience
of being a woman, confronting poverty, abandoned by their partner, and having a child with a
disability compounds their lived experience. Various (non)choices were experienced by all of the
mothers interviewed, in one way or another. Of the 26 mothers interviewed in the broader study,
24 of them (92%) experienced precarity and struggled to provide basic necessities for their
families. Amana noted, “I’ll do all the odd jobs that I can do to raise this child.” She continued,

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“That is really how our life is right now. If we have food for the day, fine. If we don’t, fine…”
Mothers with this story, however, know how to survive in large part because survival was not
new for them. Their stories depict the journey from survival towards resilience, particularly
when they encountered resources that supported their efforts in raising their children who face
stigma, discrimination, and risks to their health and well-being. This next section considers this
possibility of resilience: What did mothers express as empowering, capacity building, and
helpful supports? Their will and perseverance to survive and raise their children was clear, but a
shift from survival to resilience was evident in reflections on “joining hands with others to be
able to raise her child and not feel like she is alone” (Asha). Several excerpts from participant
interviews already outlined in previous sections illustrate how mothers move from surviving in
their everyday to experiencing empowerment and the capacity building of faith and social
support networks like the mamas’ groups mentioned previously.
Spiritual support. Faith and spirituality were themes that appeared in the majority of the
interviews, at the least as an explanation for receiving such a child as “God’s will” and “a gift
from God.” A sense that “this is what God gave me, therefore I will love this child.” Oyana’s
statement articulates this finding well in response to the general question regarding what she
identifies as key supports in her life:
My biggest source of support is God because I know, I know God provides. And here I
make some income in the [mamas] group so when I make that income I will at least go
buy food and support my kids where the father doesn’t.
As will be discussed further in Chapter Six, this deeply rooted sense of the spiritual and belief in
God is common in an African ontology and is representative of how one’s life is explained and

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made sense of. Regardless, for women with few supports, the manner in which they expressed
their faith in a kind, accepting, loving God who acts as protector and sustainer represents one of
the building blocks towards their resilience. Instilled with a sense of hope, where their belief in a
God that welcomes them into “His” family stood in direct contrast to the alternative reality of
ostracism and discrimination. Further, that this God is all-accepting and the Creator of the child
central to their abandonment gives the purpose and meaning to their existence that society
attempts or threatens to remove.
Also under this subplot of spiritual support is the nature of the women’s groups. Two of
the groups exist in large part because of the support and initiation of a faith-based NGO and its
staff. From my fieldwork, including participant observation, the groups made time for prayer and
fellowship together, including reading scripture from the Bible together. Mothers spoke of this
time as encouraging and providing a sense of hope. Interestingly, few mothers spoke of being
involved in a church or mosque community outside of this group. Instead, they mentioned
occasionally seeking prayer with a pastor or going to mosque to pray—both actions described as
comforting and an opportunity to ask for help from a higher power. The potential role of faith
communities is further discussed in Chapter Seven.
Social support. Within many of the narratives, mothers expressed support coming from
unlikely places. Oyana spoke of the uncommon juxtaposition between the “stigma,
discrimination, teasing…and rejection” from her family alongside her neighbors “encouraging
her to raise the child.” While Oyana had support from her neighbours, she did not have support
from her family. Oyana’s, journey also echoes that of other women, including Imara, when she
spoke of her husband’s grandfather as the only supportive family member. For Imara, as outlined

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in Chapter Four, she received support from her mother-in-law only after another elder in the
family identified albinism in their lineage. Further, four mothers (of 17 without albinism in the
broader study) remarried after partners left them and their children. These second marriages were
described as very supportive, loving, and protective. It is curious to consider what would
motivate a man to leave his own child but enable a man to take on a child with albinism as if
they were his own flesh and blood. Future studies would do well to investigate this angle of the
gendered dynamic of albinism. Regardless, support from these second marriages or subsequent
relationships offered support not identified elsewhere. Oyana highlights the contrast of her
second husband in the following excerpt from her story.
She married her second husband and with this husband she got another child who didn’t
have albinism. They lived with the man for seven years but then he eventually passed
on…He married her together with the child. This man was very loving, the one who
passed on. And he loved them, never discriminated...even when he goes shopping he
would buy stuff for the two of them. He was very, very loving to the children.
That something as essential as “buy[ing] stuff for the two of them” would feel so counter to how
her previous spouse treated her and her child with albinism exemplifies the inhumane conditions
families are facing. That such basic support strikes such a contrast and makes an immense
difference suggests the wide spectrum of support needed, that seemingly small or minor acts set
into motion a shift in everyday life.
Asha expressed a sense of support from her older siblings who also have grown children
with albinism. She noted that, though her husband left her and their child with albinism
immediately upon delivery, the comradery she feels with her siblings who have grown daughters

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with the condition has caused her to feel less alone. As Waithera translated, “every need she has,
she turns back to her siblings…she went to see [her brother] and he [said] there are other
children like [yours] somewhere…It is nice for her to join hands with others to be able to raise
her child and feel like she’s not alone.” Looking around at the table at the group of women, Asha
said, “You, you are also my family, eh? You are also my family.” What is important about the
support of Asha’s siblings is that while in the Tanzanian context the typical source of support
would be from one’s husband and in-laws, where one’s own family of origin is less involved
after marriage, in this case, it is her own siblings who are key supports for her. Again, support
arrived from atypical sources and was well received regardless.
More extreme are the ways in which neighbors and community members intercepted
kidnappings and violent attacks. As mentioned in previous excerpts throughout this chapter,
neighbors and Street Leaders were noted as being responsible for intervening at key moments.
Mothers noted this support as enabling them to feel some sense of security and support in their
homes and neighborhoods—knowing that their community members were looking out for their
children and willing to literally blow the whistle for help to arrive. This community capacity has
developed over the years with engagement by various NGOs in educating community leadership
as to what albinism is and the key concerns that families impacted by the condition face.
Sisterhood: Other women impacted by albinism. Much has been said in this chapter
about the vital role of the mamas’ groups. From the interviews, it was clear that relationships
with other mothers impacted by albinism altered their sense of support radically. Having other
women in their lives that have experienced much of the same stigma, abandonment, threats of
violence, and struggle to provide for their families was discussed as a relief, a remedy to the

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loneliness. Statements such as “I have no other place except the group,” “this connection keeps
me going,” and the sense of “hope I get from this group” each explain how pivotal these
connections are. That the bond between women similarly impacted by albinism makes such a
difference in their lives is representative of the level of loneliness and isolation that mothers in
this study experience as a matter of their everyday lives. Beyond the psychosocial support found
in these groups is the opportunity to earn an income based on the small enterprises these groups
have formed. Beyond connecting socially, they identified learning skills such as soap making,
beeswax wraps, candle making, and sewing, as well as communication and customer service
experience. Echoing various participants, Jiona stated in response to the question related to her
main challenges in raising a child with albinism, “My biggest challenge either way is capital so
that I am able to build on myself without worrying about literally putting food on the table.”
Quite brilliantly, the mothers’ groups currently formed within these NGOs address the social
alongside the economic—arguably any model would have to do just this.
We all have small, small businesses. And these businesses of course are not sufficient.
But I know there is power in groups. (Goma)
Mothers’ and stakeholders’ views on resilience. The concern is whether the approach
to resilience in this study inadvertently embraces a Western understanding of the concept. While
I saw these women as incredibly strong, facing remarkable odds, the remaining question was
what a Tanzanian interpretation of resilience looks like. As part of my interpretation phase,
during a second field visit, I spoke with several of the mothers and key stakeholders about how
they describe the “resilience,” “strength,” and “courage” of these women. Their responses were
enthusiastic as we fleshed out how the essence of the English word “resilience” might translate

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in the Tanzanian context and in Kiswahili. Three words were referenced: ujasiri (courage),
uhodari (courage), and uthubutu (assertive, strong, persevere). Each of these words offers a still
deeper meaning and mothers and stakeholders all argued for one or all three of them in their
description of mothers who raise their child(ren) with albinism. The most favored word,
however, was ujasiri. Described initially to me by a female pastor, she said that ujasiri means to
“Look danger in the eye and say, ‘I’ll go through it.’ ” A male pastor later said that it means to
“face the lion and fight!” Another definition offered was “the capability to stand by yourself.”
These powerful descriptions are representative of how I have come to view these women. Faced
with impossible circumstances, they chose their children every time. Mothers in this study chose
love often in radical opposition to their families, communities, society, and their own comfort.
The ujasiri that rises up within these women is the element that enables their survival. What
furthers their capacity to thrive are what they identified as key supports: Shared experience with
other mothers impacted, resources related to safety and security, health, and income. From the
data, I see the mothers as deeply courageous and resilient, possessing a perseverance that should
not be required from any one individual regardless of geography. Risking idealism and speaking
from a position of profound privilege, the capacity built by the mamas’ groups where shared
experience and support is paramount appears to further this idea of possessing ujasiri: As stated
a number of times by participants (mothers and key stakeholders alike), “when you empower the
woman, you empower the household.” There appear to be few “lions” mothers are not willing to
face. Chapter Six will further expand on this concept of resilience in the Tanzanian context,
including what it means in terms of resourcing women impacted by albinism.

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Figure 11. Sharing circle set up beneath a tree.
Summary of Storyline 5: Mothers’ Resilience through the Life Stages
From the moment of delivery through to supporting their child’s transition into
adulthood, mothers impacted by albinism in Tanzania face several challenges and what I have
termed “(non)choices.” Supports that typically fall into place, including the wraparound
postpartum support and care that a woman generally receives from her female in-laws and
neighbours, are suddenly unavailable and replaced by stigma and ostracism. As caretaker,
advocate, breadwinner, and parent, women impacted by albinism are confronted daily with
overwhelming responsibilities in light of human rights concerns, including basic safety and the
right to life of their child. It is concerning that few resources appear to be available for such

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women and their families. This research highlighted the vital role that mamas’ groups play in the
lives of women interviewed as well as income-generating resources supported by NGO-1 and
NGO-2. Following the journey from delivery through to discovery of resources illustrates the
emergence of resilience.
Chapter Summary
She really wishes that you continue visiting the women and listening to them and listening to
their challenges as we all come up with a collective solution to address our challenges. – Goma
The five storylines described throughout this chapter present the complex, intersectional
experience of mothers impacted by albinism in Tanzania: from the moment of delivery through
to supporting their child(ren) in young adulthood. Women, regardless of where they live in
Tanzania, experience the effect of a society that remains unsure how to fully relinquish age-old
myths and beliefs around albinism that perpetuate the stereotypes that stigmatize, ostracize, and
discriminate against persons with albinism and the mothers that delivered them. Key
organizations such as NGO-1 and NGO-2 continue to be instrumental in shifting this narrative
and creating space for those impacted within their communities. Government resources and
NGOs, however, have not consistently sought input or perspectives from mothers of children
with albinism. As the experts in their lives and of their families, the voices amplified in this
study bring these very experiences to the forefront, imploring society, organizations, and
government officials for reflective, responsive action. As is made clear in the findings of this
study, mothers know what their families need and are willing to express what is or has been
helpful and what is or has not been helpful. As Goma’s statement above notes, “a collective
solution,” one in which mothers are central partners, is fundamental. Time and again I heard

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from mothers and key informants: “If you empower the women/the mother, you empower the
household.” The next chapter will explore, through an Africana Womanism lens, the resilience of
these mothers and the manner in which their human rights are and are not enacted within this
context.

Figure 12. Waithera and I walking through a village towards an interview location in a mother’s
home.

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Chapter Six: Theorizing the Mothering Experience
This chapter continues to weave the theoretical lenses through which I have encountered
and interacted with the narratives and fieldwork, theorizing the lived experience of mothering
children with albinism in Tanzania. As presented in Chapter Two (Literature Review), Kromberg
et al. (1987) provide the only other research whose primary focus is the experiences of mothers
impacted by albinism, and thus the discussion presented here represents a significant new
contribution to the evidence base on albinism. Where relevant in this discussion of findings, I
will layer in existing albinism research that substantiates my findings, for example, of human
rights and SDoH in a general level (i.e., not specific to mothers’ experience). Because of this
paucity of research evidence, most fruitful in explicating the experiences of mothers are social
theories. Specifically, I will explain how I interpreted the data and contextualized the findings
using Africana Womanism (Hudson-Weems, 2019), understanding resilience through a socialecological lens (Ungar, 2013) and vernacularizing human rights (Ibhawoh, 2018). HudsonWeems’ (2019) Africana Womanism, itself rooted in critical perspectives, has been the lens from
which I read the data, from fieldwork through to data analysis. Resilience and human rights,
starting from the mother’s standpoint, are discussed, answering key questions: How might an
Africana Womanism lens describe the resilience of mothers impacted? What do human rights
mean for these mothers, from their context?
Africana Womanism and Resilience
This section will begin by reminding us how Hudson-Weems (2019) defines Africana
Womanism, discussing how I utilized this theory as the lens through which to read the data both
in the field and in further analysis stages in Canada. As a woman-centred theoretical framework

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rooted in Africana culture versus feminist perspectives largely originating in and adding onto
Western feminist perspectives, Africana Womanism provides the cultural context lacking in
Western theories. By offering an approach that seeks to honor and value the centrality of family
and sisterhood to the female experience in Africana culture, careful not to slide into essentialism
where a caricature of the Africana woman is proposed, interpretations of resilience and human
rights begin from the standpoint of mothers instead of a Western perspective that would provide
an incomplete, obtuse analysis.
Africana Womanism
Africana Womanism, a term coined by Clenora Hudson-Weems in 1987, “identified the
ethnicity of the woman being considered, and this reference to her ethnicity, establishing her
cultural identity, relates directly to her ancestry and land base – Africa” (Hudson-Weems, 2019,
p. 22). Africana Womanism (Hudson-Weems, 2019) provides an Afrocentric lens and framework
that requires us to begin from the standpoint of mothers impacted by albinism, acknowledging
what their key values and concerns are—which any recommendation or resource must consider.
Asante (1987), as the father of Afrocentric theory, asserts that Afrocentricity “means placing
African ideals at the centre of any analysis that involves African culture and behavior” (p. 6).
While Afrocentric theory could be and, perhaps should be, a chapter all its own, for the limits of
this thesis, I acknowledge its place within this analysis as well as acknowledge that in no way is
it a suggestion of broad-brush stereotyping, but rather a reclaiming of particular historical,
cultural, and traditional values that scholars are arguing are central to any Afrocentric lens
(Dove, 1998; Muwati et al., 2011; Pellerin, 2012). As defined in Chapter One, Africana
Womanism (Hudson-Weems, 2019) “commands an African-centred perspective of Africana

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women’s lives—their historical, current, and future interactions with their community, which
includes their male counterparts” (p. 30). Hudson-Weems’ (2019) framework emerged during a
period of feminist thought and action largely driven by white American women struggling for
gender equality. While Africana women and other women of colour were certainly part of these
movements, the glaring gaps in the feminist ideology of the time required a response: Race and
class were not central, much less culture. Hudson-Weems (2019), recognizing this gap and
calling it out in the mid to late 1980s, began presenting and publishing her framework, Africana
Womanism, in 1989. Her theory acknowledged that while gender oppression was part of the
Africana woman’s experience, the intersection of racism and classism could not be teased out.
This was affirmed by Senegalese philosopher Awa Thiam’s (1986) “three-fold oppression” or “3
plagues,” sexism, racism, and class division (p. 118). This also landed Hudson-Weems (2019) in,
at the time, the unpopular position of acknowledging the bond in mutual struggle Africana
women had with their male counterparts: race and class oppression. “The Africana
womanist…embraces the concept of a collective struggle for the entire family in its overall
struggle for liberation survival” (p. 29). Indeed, the Africana struggle was much broader than the
white, female struggle, thus requiring a more complex framework. Around the same time,
Crenshaw’s (1989) theory of intersectionality was first published. While Hudson-Weems (2019)
acknowledges the benefit of this theory to the overall conversation, her critique exists in the
assertion that intersectionality is an extension of mainstream white feminism that seeks to
“enhance the Eurocentric tool of analysis for Black life,” while Africana Womanism is
Afrocentric (p. 107). While not without critique, Hudson-Weems’ (2019) framework fits well

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within this study as one that begins and ends with the values and particular experiences of
Tanzanian mothers in this study.
In response to particularly American stereotypes of the Black woman (e.g., mammies,
oversexed, overbearing), Hudson-Weems (2019) outlines eighteen, what she terms,
characteristics of Africana Womanism that aim to reclaim, rename, and redefine her: “Self
Namer; Self Definer; Family Centred; Genuine in Sisterhood; Strong; In Concert with Male in
the Liberation Struggle; Whole; Authentic; Flexible Role Player; Respected; Recognized;
Spiritual; Male Compatible; Respectful of Elders; Adaptable; Ambitious; Mothering; Nurturing”
(p. 35). I will explore nine of these characteristics in the context of the mothers in this study,
demonstrating how these women embody these very characteristics: “Self Namer,” “Self
Definer,” “Strong,” “Family Centred,” “Genuine in Sisterhood,” “Flexible Role Players,”
“Spiritual,” and “Mothering and Nurturing.” My interaction with these characteristics and the
term itself is a view that they name values and practices that are embedded in social relations, in
how an Africana woman might approach life and her story within it.
Hudson-Weems (2019) asserts that, of these 18 characteristics, Self Naming and Self
Definer are fundamental. Hudson-Weems (2019) suggests the following:
In African cosmology, it is through the proper naming of a thing that its essence comes
into existence—Nommo. This powerful first is closely followed by self-definition, a key
component in life, which gives top priority status. Our responsibility, then, is to both
name ourselves, lest someone else does it, and then proceed to define ourselves and our
reality, consciously exercising these elements from our own authentic Africana
perspective or worldview. (p. 36)

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Particularly in terms of the labelling of persons with albinism (Brocco, 2015), these
characteristics are powerful when applied to the experience of persons impacted by albinism in
Tanzania. For mothers in this study who have children with albinism, this self-naming and selfdefining occurs from the moment they claim their baby with albinism as their own—in protest
against the context they find themselves in. While society may call their child zeru zeru or
mbuliwmelu (white goat), they call their child by name and assume the proud title “Mama Name
of Their Child with Albinism” (e.g., Mama Anna). The strength of these participants to define
themselves and their families in the context of albinism, not outside of it, is remarkable and flies
in the face of a stereotype suggesting all mothers and families abandon their children with
albinism. Indeed, the findings of this study stand in direct opposition to this stereotype.
“Strength” is another of Hudson-Weems’ (2019) characteristics that mothers in this study
clearly embody, suggesting that the strength of the Africana woman is her “realizing and
properly accessing herself and her movement, properly names herself and her movement” (p.
37). Mamas attending the Wamama Wanaojali groups have lived this out. They are declaring
themselves as mothers who care and love. By claiming this name and definition, they are defying
the stereotypes rampant in their social context. Even in light of being abandoned and rejected by
spouses, in-laws, and communities because of the child(ren) they delivered with albinism, these
women persist in identifying as mamas. To this point, recognizing the humanity her social
context attempts to remove from her, Hudson-Weems (2019) recalls the period of American
slavery, where, though White slave owners attempted to remove the Black woman’s identity as a
mother and companion, the Africana Womanist knew that “despite all, she was a woman and a
mother and her white owner had no real control over her personal assessment of her worth nor

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her human response to her opinion” (p. 38). Further, as self-definers, Hudson-Weems (2019)
reiterates the collectivism central to an Africana perspective: “[O]ur cultural identity, our
collective presence, supersedes individualism” (p. 39).
This collectivism is further highlighted in Africana Womanism’s characteristic of
“family-centrality” (Hudson-Weems, 2019, p. 39). Hudson-Weems (2019) argues that “the
Africana Womanist is more concerned with her entire family, including her male counterpart and
her children, our future generations, rather than with just herself and her sisters. …The survival
of her family is penultimate” (p. 39). This is echoed by Nigerian philosopher on African
ontology, Dr. Elvis Imafidon. Imafidon’s (2018) presentation of “patriarchal opportunism” in the
African context anchors much of the argument in the central role that women/mothers play in the
Africana family (p. 173).
By patriarchal opportunism, I mean the act of taking advantage of, and exploiting, the
inherent quality of, or ability to, care, the maternal tenderness and affection of African
women by African men. Patriarchal opportunism, therefore, begins with the recognition
of African women as the pillar of care and well-being of the African community and then
proceeds for several reasons to the exploitation of this ontological fact about African
women in a manner that is draining, demeaning and abusive to African women. (pp. 173174)
Suggesting that the male ego is “threatened by the obvious strength of care of the African
woman,” the man being determined to maintain his position and acknowledgement as “the head”
of the home is part of the reason for this opportunism (p. 174). Within this explanation of
patriarchal opportunism, Imafidon (2018) provides a lens in which to view the frequency at

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which men abandon their families when a child with albinism is born—aware that the mother
will parent: “In the African family, the woman cares for all family members” (p. 174). Imafidon
(2018) notes that when men counter the societal norm (e.g., parent their child with albinism in
concert with their female partner), they are chided and teased by their fellow men, indeed by
society. In line with Hudson-Weems’ (2019) Africana Womanism’s characteristics of “familycentrality” and “in concert with males in the liberation struggle,” Imafidon (2018) calls for
African men to “aim toward mutual care relations with African women” where, among a number
of other practical suggestions, he appeals to men “not taking advantage of the care of women” (p.
175). While fathers remaining with mothers to parent and care for their child with albinism is the
ideal, the current reality facing these women is far from this ideal (Chapter Five). However, as
Hudson-Weems (2019) reminds us, echoed by Dove (1998) in her discussion of mothering,
“family-centrality” extends also to kinship and community. The collectivist nature of the mamas’
groups affirms these characteristics—participants expressed desire to further engage in the
groups and emphasized the value and singularity of the support they receive from them (see
Chapter Five, “Mamas’ Groups”).
These mamas’ groups function as an extension of family and also as a sisterhood, another
key characteristic of Africana Womanism. “Genuine Sisterhood” represents the community of
women, grounded in their shared experiences, social context, and shared “sense of responsibility
for each other by looking out for one another” (p. 43). Mamas’ groups offer exactly this kind of
community and sisterhood—one which participants consistently extolled and committed to. This
characteristic provides a lens from which to replay the story outlined in Chapter Five of Inaya
reaching out to Rehema and her child at Ocean Road Hospital. Inaya, a woman integrated into a

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mamas’ group that has become a supportive social network, recognizes a loneliness and
desperation in Rehema, whether as mirrored in her own history or recounted by women in the
mamas’ groups, and extends a hand of sisterhood by inviting her to join the mamas’ group while
also giving her the contact information of a key NGO. This is Genuine Sisterhood: no previous
relation, simply shared experience, shared humanity, and a communal approach to support.
The characteristic of “Flexible Role Players” is key to understanding the experiences of
mothers in this study. Hudson-Weems (2019) positions the concept of Flexible Role Players
within the history of American slavery—identifying the ways in which slavery removed
traditional roles from men and women. Within the current Tanzanian context, however, aspects
of this concept resonate, particularly in terms of mothers impacted by albinism. Mothers in this
study explained how, following the birth of their child(ren) with albinism, they were forced to
assume other roles due to the impact of partners leaving or refusing paternity and in-laws and the
broader community rejecting them. Typically, following the delivery of their child, female
relatives and women in their community would assist the new mother with managing her home
and minding her other children. However, with the birth of a child with albinism, not only did the
mothers in this study describe the loss of this “village” of support, they also described having to
manage finances and determine how to shelter and feed their families with minimal to no
support. Hudson-Weems (2019) notes that from the Africana perspective/tradition, “men are still
considered protectors in most circles, thereby expected to uphold the family and defend both
their women and children on any and all levels if need be” (pp. 42-43). This stands in direct
contrast to the experience of mothers in this study who must gather their strength and capacity
and become sole bread winners for their families while managing the household and attempting

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to ensure shelter, nutrition, and education are provided. As many of the fathers described in this
study evaded their responsibilities, mothers had to assume new roles.
“Spirituality” is the characteristic that underpins the others (Hudson-Weems, 2019). As
identified in Chapter Five, belief in the supernatural and a Divine Being (i.e., God) was
communicated as the foundation of what gave the mothers interviewed purpose, identity,
acceptance, and hope. Whether it was in describing how they accepted their baby with albinism
as “a gift from God,” also experiencing this as a sense of broader purpose, or in attributing
opportunities or help as God’s provision, mothers in this study identified with their faith and the
supernatural (Chapter Five). It is interesting to consider how myth and belief in the supernatural
are also embedded within negative views and violence against persons with albinism. Mothers
and key informants were clear in their distinction of God versus the supernatural powers
attributed to witchdoctors and their witchcraft. Hudson-Weems’ (2019) statement that “in
African cosmology, the physical and spiritual world coexist and, hence, both realities
complement each other in working for the good of all in the universe according to God’s will,”
certainly rings true in the context of mothers in this study—dependent upon the supernatural to
intervene (p. 46). Both characteristics of strength and spirituality connect with the next section
on resilience, exploring the movement from strength and survival to resilience.
Finally, the characteristics of “Mothering and Nurturing” were palpable in the stories
shared by mothers in this study. Hudson-Weems (2019) declares that:
[T]he Africana womanist is committed to the art of mothering and nurturing, her own
children in particular and humankind in general. This collective role is supreme in
Africana culture, for the Africana woman comes from a legacy of fulfilling the role of

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supreme Mother Nature—nurturer, provider and protector. …She must remain consistent
in doing what must be done for the survival of the entire family, a commitment solidly
grounded in and realized through a positive sense of history, family-hood and security, all
of which true mothering and nurturing provide. (pp. 48 – 49)
Outlined in Chapter Five were the expressions of enduring love for their children with albinism
and the painful decisions they face(d) in terms of bringing their children to government holding
centres for safety or seeing their children sponsored in NGO programs to attend boarding school.
Important to note is how this separation is the antithesis of mothering from their perspective.
There was nothing about separation that made sense for these women beyond protecting life and
limb and the opportunity for their children to receive an education that would pave a safe and
different path for their future (i.e., break the cycle of poverty). The term I have used for these
decisions has been (non)choices. While mothers express pain in separation and the difficulty of
arriving at this decision, there appeared to be little doubt that, within the current environment in
Tanzania, it is necessary. And yet, mothers voiced concern in asking those in charge at the
boarding schools and at NGO-1 to grant them uninhibited access to their children and to
parenting: increase agency and choice. Mothers are central to successes of any kind and when we
champion women, we champion children and family. Research has shown that women, by and
large, will choose the well-being of their children before most other things (van der Mark,
Conradie, Dedding, & Broerse, 2019). Hudson-Weems’ (2019) assertion of Mothering and
Nurturing as characteristics of the Africana woman aligns well within this understanding and is
affirmed by other Africana scholars (Dove, 1998; Muwati et al., 2011; Pellerin, 2012).

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Hudson-Weems’ (2019) framework of Africana Womanism, anchored by the eighteen
characteristics of the Africana woman, highlighted for me as an outsider and researcher how
women such as the mothers interviewed in this study are experiencing their everyday within a
broader narrative of Africana history and culture. Africana Womanism helps us to “see” the
practices that are important to the experience of mothering in the Tanzanian context, helping us
to contextualize the storylines in Chapter Five. In Hudson-Weems’ expansion on Self Namer,
Self Definer, Strong, Family Centred, Genuine in Sisterhood, Flexible Role Players, Spiritual,
and Mothering and Nurturing, I was able to track the storylines I heard mothers express over and
over throughout fieldwork and in analyzing the data. These mothers resist discrimination,
stigmatization, ostracism, and human rights violations perpetrated on them and their children
because of colourism and cultural/spiritual myths and beliefs about albinism. This framework
reinforces the collective experience and the collective support that mothers interviewed
expressed and called for. Further, this framework embodies the Kiswahili terms, presented in
Chapter Five, that I was told reflected the concept of resilience: ujasiri, uthubutu, and uhodari.
Particularly ujasiri, in which a female pastor described as “to look danger in the eye and say, ‘I’ll
go through it.’ ” This kind of resolve and strength is powerful, and yet, lest we slide into labeling
the “Strong African Woman,” the fact is these mothers should not have to display this level of
strength to ensure they and their families survive infringement of their human rights. Therefore,
we cannot leave it here. There must be accountability on the environment and structures in which
these mothers live their daily lives.
The relevance of Africana Womanism for the research at hand on mothers of children
with albinism in Tanzania is affirmed by the work of various Africana scholars exploring

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motherhood (Dove, 1998; Muwati et al., 2011; Pellerin, 2012). However, as a theory it is not
without important critique (Alexander-Floyd & Simien, 2006). Hudson-Weems’ (2019) Africana
Womanism has been hailed by proponents as the Afrocentric theoretical framework to address
race, class, and gender oppression that various brands of feminism have tried to achieve within a
Eurocentric paradigm (Dove, 1998). However, scholars critical of the framework suggest that
Hudson-Weems’ work excludes the work of Black feminists and risks promoting an essentialized
Africana woman (Alexander-Floyd & Simien, 2006).
Pellerin (2012), in her study seeking to “actively engage Africana women as agents of
their own image liberation” using a photo-biographic method, asserts that research with Africana
women “must include recognition of the centrality of motherhood” (p. 77). Indeed, her study
participants affirmed key components of Africana Womanism including the centrality of
motherhood, family, and community in the photos they chose to describe and depict their
identities as Africana women (Pellerin, 2012). Dove (1998), based on her research with Africana
mothers, acknowledged that theories attempting to address the African woman’s experience
“have largely been inadequate. Those related to the feminist tradition, both White and Black,
have critiqued the social conditions of women within Europeanized societies and sought
solutions within European paradigms” (p. 515). Indeed, Dove (1998) furthers Hudson-Weems’
framework by deepening the links to culture.
Conversely, Alexander-Floyd and Simien (2006) argue that “the master narrative and
characteristics upon which [Africana Womanism] is based ignore and distort Black feminist
thought and history, fail to join theory with practice, and depend on an ahistoric, monolithic view
of African cultures” (p. 68). Critical of Hudson-Weems’ (2019) ranking of race, class, and

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gender (in this order), Alexander-Floyd and Simien (2006) align with other Black feminist
scholars (citing Kimberly Crenshaw, Patricia Hill Collins, and bell hooks) in their argument that
these identities cannot be separated or made distinct—the complexities are interacting at once. In
critique of Hudson-Weems’ eighteen characteristics defining a “true” Africana woman,
Alexander-Floyd and Simien (2006) state that they “represent a litmus test for identifying those
women who are or who are not sufficiently Black or Afrocentric. Those who remain loyal to the
race affirm, adopt, and/or exhibit the attributes of the Africana womanist” (p. 78).
While acknowledging the risk of essentializing the Africana Woman or suggesting the
experience of mothers in this study as homogenous, I have tempered the use of this framework
by making myself aware of these critiques. However, given its focus on culture and assuming an
Afrocentric stance, my belief is that it indeed remains a helpful framework from which to deepen
the analysis of this focused critical ethnography, despite and in recognition of its critiques. The
following section introduces a nuanced understanding of resilience that moves far beyond the
Eurocentric, Western definitions that highlight individual attributes as responsible for someone
either being or not being resilient. Rather, I explore how a more fulsome understanding of
resilience accounts for these mothers’ best efforts in the face of human rights infringements and
violations that prevent them and their families from thriving without a fully engaged social
ecology (Ungar, 2013).
Resilience
Ujasiri. Uhodari. Uthubutu. In the context of mothering children with albinism in
Tanzania, what does resilience look like and how does it differ from survival, with which they
are well acquainted? Resilience, also described as “resistance to the effects of exposure,” is

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absolutely demonstrated by the mothers in this study (Ungar, 2013, p. 255). However, how might
resilience actually enable well-being and family flourishing? While not applying Africana
Womanism to his theory of social ecological resilience per se, the many shared inferences within
Ungar’s (2013) theory help us consider the resilience of these mothers through an Africana
Womanism lens. Ungar’s (2008, 2012, 2013; Libório & Ungar, 2014) theory of resilience,
affirmed by South African colleagues (Theron, Theron, & Malindi, 2013), would suggest that a
mother’s resilience is either fostered towards flourishing and well-being or diminished as a direct
result of the social ecological environment in which they live. This shift away from viewing
resilience as purely individual, the Eurocentric perspective, is currently being explored in other
contexts such as amongst Indigenous Canadian communities—acknowledging the role of
history, colonialism, and culture (Kirmayer, Dandeneau, Marshall, Phillips, & Williamson,
2011). Kirmayer et al. (2011), echoing Ungar (2008), suggest that the study of resilience should
be undertaken “in collective and cultural terms to identify social-structural barriers to the
expression of resilience at crucial life transitions” (p. 85). A social ecological definition of
resilience, therefore, holds a mother’s community and government accountable for capacity
building rather than mothers bearing the sole responsibility. This is further detailed by Ungar’s
(2013) following statement:
This social ecological understanding of resilience implicates those who control the
resources that facilitate psychological well-being in the proximal processes (e.g., making
education accessible; promoting a sense of belonging in one’s community; facilitating
attachment to a caregiver; affirmation of self-worth) associated with positive
development in contexts of adversity. (p. 255)

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When resources are in place at the local and national level, such as health and social services,
security, infrastructure, mamas’ groups, access to food, shelter, education, and employment, this
study demonstrates capacity is built in a cumulative manner. That is, mothers could be further
empowered to move from survival and a disadvantaged resilience towards a resilience that
fosters well-being because, as they reach out for assistance, something would be extending a
hand in return (i.e., resources, responsive systems in place).
This study builds on existing work that has touched on the resilience of women and
families impacted by albinism (Butler-Jones, 2013; Lynch et al., 2014). Using two instruments to
measure trauma and resilience, Butler-Jones (2013) identified “themes of high traumatic
experience and high resilience” (p. 109). Such resilience included faith (or religious belief),
which Lynch et al. (2014) also identified as a protective factor influencing families’ resiliency in
the face of adversity, discrimination, and stigma. In recommending further research related to the
resiliency of women impacted by albinism, Butler-Jones (2013) identified women in her study,
as in this study, as being an untapped resource in terms of albinism education to communities
and professionals alike. This study undertaken with mothers identified the silence of their voices
in literature and resources—recognizing that participants are a storehouse of knowledge,
experience, and passion that could not only assist government, policymakers, NGOs/CSOs in
their efforts, but would also have an empowering benefit on the mothers themselves. Speaking to
the silenced experiences, Ungar (2012), notes “across contexts and cultures, the voices of
disadvantaged people are not privileged…which means they go largely unheard when it comes to
designing services that matter most to resilience” (p. 388). Adding the narratives in this study to
the literature, including by way of submitting memos to partnering NGOs that summarize the

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data collection, findings, and recommendations, brings the voices of mothers and their families
impacted to the table. No longer can we say, “We just don’t know what they need.”
In connecting Ungar’s (2013) social ecological resilience, Hudson-Weems’ (2019)
Africana Womanism, and the voices of mothers in this study, we begin to see markers for where
broader systems and structures are needed to engage. Ungar (2013) describes “seen protective
factors” (p. 259), which align with many of Hudson-Weems’ (2019) Africana Womanism
characteristics described above, that enable the environment women live and mother in to be
considered. Protective factors include “supportive relationships, opportunities to experience a
powerful self-definition, experiences of efficacy, experiences of social justice, access to material
resources like food, education and housing, a sense of cohesion within one’s family, community
or school, and cultural adherence” (Ungar, 2013, p. 259). The Africana Womanism
characteristics of Family-centrality, Genuine in Sisterhood, Strength, Self-Definer, and SelfNamer are particularly represented within Ungar’s (2013) discussion of protective factors that
“account for positive adaptation” towards resilience (p. 259). These characteristics, together with
aforementioned protective factors, foster an environment in which resilience that effectuates
well-being and flourishing can exist. To this point, Ungar (2013) asserts that for individuals such
as the women and families in this study “who are coping with highly adverse family and
community contexts, individually focused interventions are less likely to foster well-being than
interventions that first mitigate exposure to risk factors like violence, poverty, and social
marginalization resulting from immigration, homophobia, and racism” (p. 263). While the lens of
Africana Womanism (Hudson-Weems, 2019) stresses that we recognize mothers in this study as
embodying Africana characteristics as listed above, Ungar (2013) and Kirmayer et al. (2011)

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challenge researchers, government, policy makers (i.e., those in positions of power, privilege,
and authority) to address system level and structural risk factors that mothers in this study
mentioned time and again. These factors include: poverty, marginalization, colourism related to
albinism, health inequities, lack of education and employment. Such inadequacies at the system
level hold these women and their children back from experiencing the fruit of a resilience that
further enables a holistic health and well-being. The following figure (Figure 13) illustrates the
realization of social ecological resilience within the context of mothers impacted by albinism in
this study. Well-being and flourishing are enabled when, despite ongoing risk factors, a mother’s
capacity to cope and survive, bolstered by protective factors such as those found in Africana
Womanism, is met with capacity from her social ecology.

Figure 13. Social ecological resilience in the context of mothers impacted by albinism.

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The characteristics in Africana Womanism are to be empowering, as are the mamas’
groups and the support for them provided by both NGOs highlighted in this study. When such
resources and supports empower these characteristics they can be protective factors. However,
when resources or supports are not in alignment with these characteristics and the values voiced
by mothers themselves, they can become prohibitive or even risk factors to well-being and
family flourishing (e.g., separation from their children, especially where barriers to parenting
exist). Indeed, Ungar (2008) warns that “we must understand the context in which the resources
to nurture resilience are found in order to avoid hegemony in how we characterize successful
development and good coping strategies” (p. 221). Particularly, when foreign NGOs are
determining programs and resources, avoiding Eurocentric approaches are required to avoid this
hegemony.
In considering this risk of missing alternate coping strategies within adverse contexts
outside of Eurocentric frameworks, Ungar (2013) argues that we must actively acknowledge and
look for them. This study provides several examples that illustrate such resilience from the
practical level to the psychosocial, for example, navigating various “opportunities” to generate
income from selling fruit at a roadside stand to learning a new craft for selling as part of a
mamas’ group collective. Another key example that gets to the heart of mothering in the context
of albinism in Tanzania is how mothers navigate separation from their children in the context of
government holding centres and boarding schools. The care and strength required in bringing
their child to holding centres for protection and education, responding to an environment failing
them and their children (i.e., unable to ensure safety in their own communities, ongoing
discrimination), is for many beyond comprehension. However, for the mothers whose stories are

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represented in this study, their resolve in the face of such (non)choices to continue to reach out
and connect with other women living out shared experiences, remaining open to options for
support and income generation, certainly demonstrates “resistance to the effects of exposure, also
termed resilience” (as defined earlier in this section) (p. 255). This example, highlighting the
diminishing effects of the absence of coordinated, effective, and meaningful structural responses,
does illustrate an individual resilience where a woman’s social ecology is not conducive to
building on her resilience in such a way that promotes and sustains well-being. Mothers in this
study indeed demonstrate this level of resilience. However, they are appealing for resources that
would engage their current efforts. This desire to engage with their social ecology is waged in
the balance of a country facing various demands on its developmental and infrastructure
priorities. However, what these women request are often services already available for those
families Imafidon (2020) identifies as the melanin-privileged, such as non-discriminatory
education, access to health care equipped to educate patients on their condition, or access to
medications required (sunscreen has not yet been classified as a prescription medication for
persons with albinism).
As referenced, Eurocentric definitions of resilience look to an individual person’s ability
to “bounce back” following a traumatic experience. This definition was used by Butler-Jones
(2013) in exploring the help-seeking behaviours and resilience of women with albinism in
Tanzania. While her dissertation was an important start to the conversation, Ungar’s (2013)
social ecological conceptualization of resilience provides both the contextual and cultural
components necessary to evaluate this concept from an Afrocentric perspective—moving the
analysis forward. “The ecological definition purposely decentres individuals to avoid blaming

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them for not flourishing when there are few opportunities to access resources” (p. 256). This
dissonance between Western conceptions and Ungar’s definition is something of a “resilience
fallacy.” Ungar (2013) asserts that “an overemphasis on personal agency and other aspects of
what has come to be known as ‘resiliency’ naively assumes that individuals survive only because
of a positive attitude or other fiction” (p. 256). These “other fictions” include things like seeking
help and resources where the proper resources and help do not exist or are not responsive.
Ungar’s (2013) framework of resilience requires us to consider the responsibility of inadequate
or hostile environments. From a Eurocentric viewpoint, help and resources are typically a phone
call or referral away. For the mothers in this study, such resources are hardly existent, save for
the mamas’ groups. With the exception of this resource, no other woman/mother-centred
resource was identified by participants within this context. Mamas’ groups appear to provide the
ecology that Ungar (2013) argues enables resilience: “I defined resilience as the capacity of both
individuals and their environments to interact in ways that optimize developmental processes”
(p. 256). These mamas’ groups also provide some of the protective factors that promote
resilience, such as community cohesion, access to a support network, opportunity to earn an
income and build skills for future employment, and the fostering of self-worth and self-esteem.
Most importantly, most mothers in this study lauded these mamas’ groups as the only source of
psychosocial and economic support, reinforcing the following statement by Ungar (2013):
Therefore, a social ecological interpretation of resilience emphasizes cultural sensitivity:
A resource is only useful if it is valued. Individual resilience occurs when there is an
opportunity structure (an environment that facilitates access to resources) and a

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willingness by those who control resources to provide what individuals need in ways that
are congruent with their culture. (p. 256)
This study demonstrates that the mamas’ groups and the NGOs supporting them are currently the
single “opportunity structure” supporting these women in meaningful ways as identified by them.
While not perfect, with mothers requesting more agency and choice in terms of their groups and
how NGOs interact with them as parents and caregivers, these were the singular resources voiced
by mothers in this study as responding to their particular need.
As articulated in Hudson-Weems’ (2019) Africana Womanism framework, the centrality
of sisterhood, kinship and community in the Tanzanian way of life is paramount. Ungar’s (2013)
acknowledgement that the way in which a Eurocentric understanding of resilience is
“incongruent with the more relational worldviews of communities” such as those communities in
which mothers in this study find themselves, highlights how their situation is made that much
more painful. When mothers are forced outside of this communal fabric of support and kinship,
they lose their army. The army of support and defenders that is responsive to those in the
community that ascribe and fit the norm—those that are not other. This concept is rooted in the
South African term Ubuntu: I am, because you are. This idea will be explored in the following
section on human rights. However, here it helps focus our perspective on how mothers impacted
by albinism are experiencing an ostracism and isolation from what was largely portrayed to me
as the typical Tanzanian approach to family and neighbor. Therefore, even more, Ungar’s (2013)
theory of resilience supports the call for mothers’ social ecologies to engage and participate in
meaningful ways identified by mothers themselves: “The personal agency of individuals to

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navigate and negotiate for what they need is dependent upon the capacity and willingness of
peoples’ social ecologies to meet those needs” (p. 256).
Mechanisms to Foster Resilience
This following section considers how Ungar’s (2013) social ecological resilience could
be fostered within the Tanzanian context to enact and ensure human rights of mothers and their
children impacted by albinism. Anchored in global health perspectives, the UN Sustainable
Development Goals (SDGs) (UN, 2015) help us consider how fostering the human rights of
mothers can begin by utilizing the framework already espoused in the SDGs, specifically, SDG
#3 (good health and well-being) and #5 (gender equality). Using Ibhawoh’s (2018) work on
human rights in Africa, particularly the concept of vernacularizing human rights to the local
level, I will explore how the environment might foster the resources required for mothers’
resilience to be fully realized. When Ungar’s (2013) protective factors are employed, building
upon the Africana Womanism characteristics that mothers in this study already possess,
vernacularizing human rights is the next layer that works to ensure mothers and their families
attain well-being and have access to flourishing within their society. This conceptualization of
human rights is the natural foundation embodied in Ubuntu: I am because you are.
Human Rights
The findings chapters (Chapters Four and Five) give insight into how human rights were
experienced by mothers impacted by albinism. Specifically, the following articles that Tanzania
has adopted under UN conventions are all evident in the mother’s narratives. Despite this human
rights protection, mothers were separated from their children due to risks to their safety and
security. Following from the details presented in Chapters Four and Five, there is evidence in

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this study to support that all of the following human rights, as outlined by the UN Committee on
Economic, Social, and Cultural Rights (CESCR) (1993) and the African Charter on the Rights
and Welfare of the Child (Organization of African Unity (OAU), 1990), of mothers impacted by
albinism are violated: Right to Adequate Standard of Living; Right to Health; Right to Social
Security; Right to Protection and Assistance for the Family; Right to Education; Right to
Protection of the Family; Right to Parental Care and Protection; Right to Parental
Responsibilities; Right to Protection against Harmful Social and Cultural Practices; Protection
from Sale, Trafficking (including body parts, organs, hair, fingers, nails, blood, bones), and
Abduction; Right to Non-Discrimination; Right to Work; and the Right to Access to Justice
(UNGA, 2019b). This exhaustive list could read as signposts for government and local and
international stakeholders to consider where their impact could most readily be engaged. The
details of Imara’s story in Chapter Four help us to consider the human impact of several of these
human rights violations. For Imara, these include exactly some of these violations mentioned
above, including the right to parental care and protection (Articles 19 and 25 of the African
Charter on the Rights and Welfare of the Child [OAU, 1990]); protection and assistance for the
family (African Charter - Article 18 [OAU, 1990]), and CESCR Article – 10 (UN CESCR,
1993); the right to work (CESCR - Article 6) and the right to social security (CESCR - Article
9). Perhaps, then, one of the main findings of this study is the multiplicity of human rights
violations that mothers navigate on their road to resilience.
Given the very present concern of securing the human rights of women and their families
impacted by albinism, linking this study to the framework laid out within the SDGs is critical.
Ero, in her work as Independent Expert on the enjoyment of human rights by persons with

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albinism, has anchored much of her mandate on the UN’s commitment to start with “the furthest
behind first” (UN, 2015, p. 7). As a marginalized, minority community experiencing systemic
and structural discrimination, stigmatization, and ostracism, largely silenced in current policy,
mothers and children in this study are indeed amongst the “furthest behind.” The SDGs provide
an accountability tool for broader government and policymakers within Tanzania, offering a way
to measure, assess, and advance human rights particularly for persons impacted by albinism,
along with their families. Two of the SDGs provide an excellent grounding for work particular to
the gendered nature and experience of albinism: good health and well-being (Goal 3) and gender
equality (Goal 5). Both of these goals, when considered from the purview of both UN Women
(Browne, 2017) and the UN Convention on the Rights of Persons with Disabilities (CRPD) (UN
Department of Economic and Social Affairs, 2018), anchor the particular experience of mothers
impacted by albinism. Government and policymakers should ground their next steps within these
frameworks. Further, they should be centred on dialogue with mothers impacted by albinism
themselves. As a largely untapped source of knowledge and expertise in their own lives and the
situations of their children, their voices should be involved in all policies that impact their lives,
livelihoods, and well-being, moving towards gender equality and equitable access to health care.
As outlined in Chapter Two (Literature Review), little research in the field speaks
explicitly to human rights (Burke et al., 2014; Franklin et al., 2018; Masanja & Magembe, 2015;
Reimer-Kirkham et al., 2019) and not a single article features discussion around human rights
and the experience of mothers specifically. This study addresses this lack in current research
literature in such a way that invites deeper analysis and opportunity for further research. In her
reports, Ero, UN Independent Expert, has explicitly highlighted the particular vulnerability of

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women and children impacted by albinism (UNGA, 2016b, 2017b, 2018, 2019a). Most recently,
published in December 2019, Ero’s report to the 43rd session of the Human Rights Council
(UNGA, 2019a) focuses solely on women and children impacted by albinism, with particular
references to mothers of children with albinism. This is a remarkable step towards promoting and
ensuring the human rights of mothers impacted, providing a much-needed framework for a
multisectoral response. In recent years, discussion around ensuring the human rights of children
with albinism (Franklin et al., 2018) has begun to lay the groundwork for considering human
rights from a family-centred perspective, as children are inextricably representative of family and
community. Indeed, Burke et al. (2014), in their findings, discussed that, in Tanzania, “human
rights are situated within a legal framework in which the state is that agency that guarantees
human rights, but it also positions rights as the responsibility of the community,” including both
perpetrators and protectors (p. 128). This study further suggests that any conceptualization of
human rights within the Tanzanian context must not only engage the broader community but also
be community-centred.
Archbishop Desmond Tutu, as the head of the Truth and Reconciliation Commission in
post-apartheid South Africa, provides an explanation of the South African word Ubuntu as the
concept that “encapsulates the notion of an interdependent humanity that is central to indigenous
African cosmology” (Ibhawoh, 2018, p. 31). Ibhawoh (2018) offers the following interpretation
of how Ubuntu is enacted:
“My humanity is caught up in your humanity, and when your humanity is enhanced—
whether I like it or not—my humanity is enhanced. Likewise, when you are
dehumanized, inexorably, I am dehumanized as well.” It is a distinctly African take on

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the golden rule or law of reciprocity, which is evident in many religions and cultures. (p.
31-32)
Adopting a Tanzanian interpretation of this, Julius Nyerere, Tanzania’s first Prime Minister and
then President following liberation from colonial rule in 1961, argued an embodiment of
Ujamaa, the Kiswahili interpretation of Ubuntu, suggesting togetherness, unity, and equality.
Ujamaa was used to promote Nyerere’s championing of his philosophy of socialism in
Tanzania’s early years as a country (Ibhawoh, 2018).
In personal communications with stakeholders, during my time in Tanzania and since
returning, Ubuntu appears to be wrapped up in the concept of Ujamaa. In a followup email
exchange between stakeholders and myself, the concepts of Ubuntu and Ujamaa were at once
combined and similarly defined to eventually be suggested as going in somewhat different
directions. As political as Ubuntu would have been when taken up by Archbishop Tutu, so too
Ujamaa has a strong political force as it came to be during Nyerere’s leadership in Tanzania.
Ubuntu remains a communal and human to human philosophy. That said, a key stakeholder (A.
Gwacha, personal communication, January 12, 2020) reflected how in Tanzania “we believe in
community that surrounds us and that every child belongs to everyone in that community…it is
the job of everyone to take care of [your] fellow man.” She went on to explain the concept of
Ujamaa as rooted in this concept of community extending to the sharing of resources to ensure
the community as a whole is taken care of. The latter clearly introduces Nyerere’s promotion of a
more political socialism that naturally fit into what Ibhawoh (2018) describes as very much a
part of an “African cosmology” (p. 31), and what Imafidon (2017) refers to as an African
ontology. If the work of promoting and ensuring the human rights of persons with albinism

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begins within these cultural conceptualizations of community-centred care and living,
interrupting myths and beliefs will perhaps be more plausible.
Indeed, there is an entire Christian theology devoted to Ubuntu (Membe-Matale, 2015).
Membe-Matale (2015) argues that the “transformative spirit that connects us to others” in
Ubuntu, “inspire[s] us to stand firmly against marginalization and discrimination” (p. 274). She
goes on to connect the deep underpinnings of human rights to this theology of Ubuntu: “It seeks
the redemption of the whole earth, resists life-destroying values, and inspires us to discover
innovative alternatives that promote life in all its forms” (p. 274). Within the Tanzanian context,
linking Ubuntu to African ontology and Christian theology carries important implications for a
way forward to ensuring the human rights of mothers impacted by albinism. This will be further
discussed in the next chapter on recommendations.
Because human rights discourse can seem inaccessible at the highly global level (i.e., at
the level of the United Nations, the African Union), Ibhawoh (2018) offered the approach of a
“vernacularized universal human rights” in which “universal human rights have intrinsically
local dimensions since they gain meaning when applied to local contexts” (p. 226). Ubuntu and
Ujamaa begin this vernacularization of human rights at the local level and Ubuntu theology
captures even more complexities. Further, a vernacularized human rights acknowledges human
rights as embedded within broader narratives—embedded in the everyday cultural, religious,
spiritual, and political practices of societies. Ibhawoh (2018) notes that “African-ists who must
work often with oral histories are familiar with the benefits of multiple tellings of a story. When
a story is told from several perspectives, each retelling helps the listener appreciate its inherent

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complexities” (p. 25). The narratives of mothers impacted by albinism, recounted in this study,
give witness to complexities of human rights violations experienced in the everyday.
Integrating the Analytic Contributions of the Study
Interpreting human rights alongside Ungar’s (2013) social ecological resilience, and
drawing on the characteristics provided by Hudson-Weems’ (2019) Africana Womanism allowed
for, at the least, an appreciation of the cross-cutting, multisectoral and intersectional implications
for mothers of children with albinism. Yet, much of their experience exists outside of the
idealized Africana way of life that Hudson-Weems (2019) inadvertently reifies. There is a draw
to perpetuate an essentialized narrative of the “Strong African Woman” who survives despite
multiple and intersecting forms of vulnerability related to various SDoH. While not denigrating
the capacity of mothers of children with albinism, we must acknowledge that they are
experiencing various (non)choices that accompany their structural vulnerability. Their ability to
climb out of poverty, further their educations, obtain gainful employment, and experience the
support of family and community are all hampered by the fact that the child(ren) they have
delivered have what is an unacceptable and misunderstood condition within their broader
society. Their choice to rise to the occasion, arguably, has nothing to do with choice. All 17
mothers in my study expressed unconditional love for their children with albinism—they
sacrificed their own choices to raise their child(ren). Of course, these women are strong: This is
obvious, but my caution is that this emphasis on their strength can result in policymakers and
leadership overlooking the social ecological conditions and structural/system level inadequacies
that require them to be so strong. Their ability to be strong should be removed from the equation
when considering policies and system level responses that would improve the situation of

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mothers and their children affected by albinism. This argument requires much more deliberate
dialogue to appreciate the underlying determination that these mothers demonstrated for their
children.
Resources impact a mothers’ ability to begin taking back choice. Perhaps it is the
resource of fellow women who too can relate, like Wamama Wanaojali, or health services that
mean she does not have to worry about regular vision care, skin care, and sunscreen. Perhaps it
means policies that ensure fathers who choose to leave their children are accountable, at least
economically, to support mother and child. Perhaps it is envisioning a community that
understands what albinism actually is and chooses to disregard myths and superstitions that have
hurt women and their children impacted by albinism for generations.
Indeed, these mothers are strong and they are resilient in the face of impossibly difficult
circumstances, but they should not have to be as strong and resilient as they are. Their societies,
communities, and governments have ultimately denied them the rights that should be bestowed
to all people. Their social ecologies are not conducive to coming close to well-being and human
flourishing. These women are busy advocating for the daily needs of their children: shelter, food,
schooling, health care, eye care, safety and security. Yes, these mothers are strong and resilient,
but we cannot lose the central point: They should not have to face what they do as a result of
albinism.
Chapter Summary
In this chapter I have described how I employed the lens of Africana Womanism
(Hudson-Weems, 2019) to deepen the analysis of the findings using social ecological resilience
(Ungar, 2013) and a vernacularized human rights framework. These perspectives grounded the

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analysis within the Tanzanian context, being mindful and intentional about avoiding application
of Eurocentric, Western frameworks to the concerns voiced by the women and stakeholders in
this study. The UN SDGs, specifically goals 3 and 5, were applied for illuminating access to
equitable health care and gender equality as interrelated when addressing the human rights of
mothers and their children impacted by albinism. Overall, Hudson-Weems’ (2019) Africana
Womanism’s deeply embodied characteristics of Self Namer, Self Definer, Strong, Family
Centred, Genuine in Sisterhood, Flexible Role Players, Spiritual, and Mothering and Nurturing
contextualized the lived experience of mothers impacted by albinism and engaged with Ungar’s
(2013) definition of social ecological resilience that accounted for the environments that mothers
and their children with albinism are confronted with. These environments, severely lacking in
support and resources, demonstrate the various violations to the human rights of mothers and
their children. Vernacularizing human rights, or applying them to the local level, draws on
concepts of Ubuntu and Ujamaa which are, inherently, deeply community-centred, calling on a
human rights response that accounts for all humans recognizing the humanity in the other. In the
next chapter, I will offer a summary of findings, conclusions of this study, and recommendations
at the policy, health and social services, civil society, education, leadership, and research levels.

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Figure 14. Taking a break from a Sharing Circle. Water, cookies, the interview guide, and my
notebook foreground a mother walking outside with her young child with albinism.

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Chapter Seven: Summary and Recommendations
The purpose of this study was to explore the social influences on the experience of
mothering children with albinism in Tanzania. In this final chapter, I will present a summary of
the findings and outline key conclusions. As a final point, I will propose recommendations for
policy, civil society, health and social services, education, research, and leadership in terms of
partnering with mothers impacted by albinism.
Summary of the Findings
Using the method of focused critical ethnography over 10 weeks of fieldwork, separated
into two trips, in the Dar es Salaam and Mwanza regions of Tanzania, this study explored the
social influences that shape the lived experience of mothers of children with albinism in this
context. Using semi-structured interviewing, I interviewed participants individually and/or in
sharing circles alongside Waithera (cultural liaison) and other interpreters. This study’s sample is
part of a broader study which involves sharing circles and interviews (N= 62). For the primary
sample of this study, I drew on the narratives of six mothers. Another 12 mothers’ experiences,
suggestions, or reflections are included in a secondary sample. To further understand the context
and services or resources available, I also drew on interviews with six key stakeholders. Thus,
the total sample for this thesis was 24 participants (N=24).
Using the lens of Hudson-Weems’ (2019) Africana Womanism, several key storylines
were derived from the case study of Imara (Chapter Four). These storylines were expanded on by
drawing on the parallel and counter narratives from other participants (Chapter Five): Social
Context: Situating Mother’s Experiences; Safety and Security: Carrying the Burden; Role of
NGOs: Resourcing a Gap; Sponsorship and Mothering: Responding to Separation; and

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Mothering: Resilience through the Life Stages of Parenting. Within each of these broader
storylines, several subplots were discerned that further illustrate how women navigate the burden
of parenting largely on their own. Each storyline bears the effects of partners/spouses leaving
once a child with albinism is born, in-laws refusing kinship, and their communities ostracizing
and stigmatizing them and their children. Mothers’ experiences are described against the
backdrop of the broader context of little access to life-sustaining, life-enabling resources such as
health and social services, employment, affordable education for their children, and the
continued threats of attacks and abductions of their children. Vulnerable to an array of situations
that their social ecology does not protect them from, mothers survive their situation based on
strength and resolve to mother their children. In Chapter Six, Ungar’s (2013) concept of social
ecological resilience was applied to mothers’ context as I argued that, despite mother’s strength
and resolve, their environments largely fail to enable their well-being and family flourishing.
This study confirmed that mothers’ primary concerns are ensuring safety and security for
their children with albinism, and ensuring they have shelter, food, and lifesaving sunscreen
(Objective 1). Mothers articulated that NGO-1 and NGO-2 provide the main source of health and
social services in the forms of mobile clinics for dermatology and eye care, education through
sponsorship programs for their children with albinism, and support and facilitation of the mamas’
groups so valued by mothers in this study (Objective 2). Mothers explained that, by and large,
they were not given necessary information upon the birth of their child(ren) about the condition
of albinism. This remains an area of grave concern: If mothers are equipped early with
knowledge and tools to protect their children from skin cancer and barriers related to low vision,
their health and well-being will begin in the right trajectory. Mothers bear the burden of stigma,

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discrimination, and violence against their children with albinism (Objective 3). As children of
single-mother homes are more vulnerable to attacks and abduction, mothers spoke of the stress
and anxiety around attempts to ensure their children remain safe when out of their presence (e.g.,
while at school, walking to and from school, at home while mothers are working). Finally,
mothers interviewed spoke of needing capital in order to start businesses individually or
collectively with other women as a path out of poverty, or even towards living in a safe home.
Mothers spoke of the negative views of society as barriers to such pathways, prohibitive of
employment and full engagement/participation in the community. They spoke of mamas’ groups
as the only space where they experienced being fully embraced and supported. Mamas’ groups
offered the social and economic supports they have not found elsewhere (Objective 4).
Conclusions of the Study
She really wishes that you continue visiting the women and listening to them and listening to
their challenges as we all come up with a collective solution to address our challenges.
– Mother, Sharing Circle-8
The following conclusions are generated on the basis of this study’s findings.
1. Mothers impacted by albinism face various and compounding factors that influence their
own and their child(ren)’s health and well-being, access to services, and parenting. NGOs such
as NGO-1 and NGO-2 currently provide the vital services that have improved the lives of
persons with albinism. Mamas’ groups remain the only mother-specific service, and they have
yet to be scaled up.

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2. Mothers experience stigma and discrimination immediately upon delivery of their child
with albinism which continues across the lifespan of their child(ren). Many of their human rights
are threatened, including safety and security, access to health and education, access to
employment, and support of their right to parenting. In the face of a multiplicity of human rights
violations, mothers are surviving and asking more from their environments.
3. Given resources and support, mothers’ resilience is realized in a way that moves their
experience from one of survival to well-being and family flourishing. This occurs in the presence
of targeted, multi-sectoral supports that account for their intersectional experience: social, health
and social services, education, and economic.
4. This study highlights that the voices of mothers impacted by albinism are too often silent
in current policies and practices aimed to serve those impacted by albinism in Tanzania. Mothers
are the experts in their own lives and know what supports and resources would best benefit them
and their children in the context of albinism. Counter to the assumption that mothers abandon
their children or do not wish to be a part of their life, every mother in this study communicated a
strong desire to mother their child(ren) with albinism despite the circumstances they are thrust
into as a result. All barriers to accessing their children and providing the key function of
parenting need to be removed. This study revealed that there is no replacement for the role of the
mother and that this is deeply experienced by women and their children who have been
separated—even in the context of ensuring safety and security, the answer cannot be family
separation.

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Recommendations
The following recommendations reflect the key findings in this study. Through a nursing
lens, relevant recommendations are offered at the policy, NGO/CSO, health and social services,
research, and leadership levels.
Policy
At the policy level, much direction can be found following the UN Sustainable
Development Goals (SDGs) for 2030. Government and policymakers should ground their next
steps within this framework. The SDGs provide an accountability tool for broader government
and policymakers within Tanzania, offering a way to measure, assess, and advance the human
rights of mothers and their children for equitable access to health care and gender equality.
All policy efforts should begin with the perspectives of mothers impacted by albinism
themselves. As a largely untapped source of knowledge and expertise in their own lives and the
situations of their children, their voices should be involved in all stages of policy development
and implantation. Embedded within policies regarding these mothers and their children should be
considerations regarding how they will positively impact their lives, livelihoods, and well-being.
Policy related to health and social services should engage nursing leadership within
Tanzania. Nurses, as central professionals providing health care to women and children, have
expertise that could provide policy makers with key information as to gaps within nursing
education and practice that perpetuate unethical care of mothers and their children born with
albinism. As global leaders in health policy, nursing scholarship and leadership is needed to
develop relevant, sustainable policy formation impacting the profession and the patients in its
care.

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Civil Society and Non-Governmental Organizations
Mamas’ groups need to be supported and scaled up. These groups provide invaluable
social support, sisterhood and economic resourcing and may be the first point of contact for
mothers with similar life experiences, as reflected numerous times by participants (Chapter
Five). The groups also provide a basic level of skill training to support their economic livelihood,
which impacts their family as a whole. The findings of this study revealed that these groups are
the sole support for mothers impacted by albinism in a number of cases.
These mamas’ groups represent an access point for stakeholders to engage women
impacted by albinism to seek their expertise in their own lives and that of their children. Women
identified what they needed to address the poverty they confront: capital to grow their
businesses, both individual and collective. Groups were very entrepreneurial. For example, one
group shared their idea for starting a mill business together—aware that they would be able to
produce more grain as a group than individually. Business acumen exists; fostering this with
further resources could be a way in which CSOs/NGOs could scale up their support of mothers
impacted. As mothers are resourced and supported, they could be involved in advocacy work.
This involvement could be empowering for women who are largely silenced and marginalized.
Opportunities for them to be a part of creating change in their own communities and society
further movement towards well-being and family flourishing.
CSOs and NGOs are central to community education regarding albinism. Both NGO-1
and NGO-2 provide extensive education to community leadership, healthcare professionals,
educators, faith leaders, and government officials. This education should be supported by the
government and scaled up to continue reaching stakeholders throughout Tanzania, particularly in

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healthcare facilities, clinics, and among villages where traditional midwives or family members
deliver babies in their communities.
Mobile clinics remain a key source of health services for families impacted by albinism,
including dermatology and eye care clinics. Mothers requested an ease of accessing such clinics,
including knowing in advance when and where they are to be held. Mothers requested that if not
all of their children with albinism are sponsored in a boarding school where such mobile clinics
are regularly scheduled and well attended, that they be notified and invited to bring other
children they have with albinism to receive the care at the same time. It is noted that both NGOs
in this study make great efforts to ensure that all children and families impacted by albinism are
notified and included in these clinics. The challenge of ensuring information is well
communicated in the context of Tanzania is difficult given various barriers, most obviously a
lack of infrastructure and geographical distance between villages.
Finally, a commitment to move towards a family-centred approach to sponsorship is
necessary. This would be in line with valuing the central role of family, key within the subSaharan context (Hudson-Weems, 2019). Mothers and children must be viewed as one unit: not
to be separated, but to be supported as a dyad. Particularly in the transition towards family
sponsorship, attention must be directed towards reducing barriers to accessing children currently
sponsored in boarding schools. As discussed in Chapter Five, mothers face various roadblocks as
they attempt to visit their children sponsored in some boarding schools:
transportation/accommodation costs, obtaining documents from government offices (local and
district leadership) proving they are the child’s parent, the inability to communicate directly with
school administration or staff regarding the academic and social progress of their child(ren), and

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lengthy separation from their children. While safety and security must be ensured in these
schools, parental rights must not be infringed upon per the African Charter on the Rights and
Welfare of the Child (1990) (Articles 19 and 20 specifically) of which Tanzania is a signatory.
Health and Social Services
As Waithera aptly argues, “it all starts in the delivery room” (personal communication,
January 2019). From the moment a baby with albinism is identified in the birth canal by a nurse,
midwife, physician, or lay midwife in the woman’s home, the journey for mother and babe
begins. This represents an opportunity to begin the journey of mothering a child with albinism
accepted, well informed, and empowered. Unfortunately, for the vast majority of women, as
confirmed in our research, these experiences are typically the antithesis of this with healthcare
practitioners often uninformed about albinism themselves. Interviews revealed that there is
progress being made in particular hospitals and regions, but confirmed that more education for
staff was needed to ensure that mothers and their families leave the hospital knowing more about
albinism and how to care for their child. As a point of priority, spouses/partners must be included
in hospital discharge teaching regarding albinism, including the genetic component.
Healthcare leadership from policy, education, and regulatory sectors must ensure that all
healthcare providers, including traditional midwives, are well equipped to respond to deliveries
of children with albinism. Such stakeholders should partner with NGOs and CSOs in delivering
such education, as this study identified the effectiveness of persons with albinism themselves
delivering this education. In terms of trajectory, prioritizing healthcare professionals in
engagement and education strategies aimed at engaging entire families from the point of delivery
is quintessential. Upstream approaches would ensure that women who deliver a baby with

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albinism are immediately embraced with wraparound support and services. Such services would
include nurses and physicians who provide incremental information to mothers and fathers upon
delivery; social workers who meet families in hospital and follow up in their homes; pharmacies
providing regular access to free sunscreen; and community clinics providing skin assessments
and vision care.
The role of social services in family reunification is of vital importance. As documented
in other reports, mothers and key stakeholders in this study emphasized that the separation of
children from their families carries long-term effects. The loss of parenting and attachment
surfaced various times in interviews with both mothers and key informants (e.g., teachers and
social workers). Two recommendations that surfaced as priorities: reunification, when safe and
in the best interests of the child and minimizing barriers (as outlined in the section above) to
accessing their children when separation is required due to safety. The importance of
reunification exists not only for the child affected, but the mother who has been separated from
her child(ren).
Addressing trauma on the individual and family level should also be allocated to social
services within Tanzania. This will require a large scaling up of resources in this sector of health
care. The trauma experienced by mothers affected by albinism takes multiple and repeated
forms, including stigma and discrimination, violence and threats to security, separation from
children, and abandonment by partners and family members. Therefore, access to counselling
and trauma support services that are culturally and contextually relevant is needed. The explicit
request for contextual, Afrocentric counseling and support surfaced with participants identifying
that Westerners need not apply.

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Research
Further research related to the gendered nature of albinism is required to understand the
social context in which fathers disengage from their families and abandon their partners when
they deliver a child(ren) with albinism. Research on engaging fathers of children with albinism
to remain involved and supportive of their families is needed as single parenting in the
Tanzanian context is a key burden to mothers impacted. Further, within an African ontology, it
appears to be counter to values of family-centrality as well as deeply held religious beliefs (i.e.,
large numbers of the Tanzania population identify as Christian and Muslim).
Further research related to the experience of mothers impacted by albinism, including
mothers with albinism themselves, is needed. Indeed, future research related to albinism,
particularly children with albinism, should include the perspectives and experiences of mothers,
affirming the mother-child dyad. Applying Hudson-Weems’ (2019) Africana Womanism as a
theoretical framework alongside a human rights lens within future research related to women
impacted by albinism would advance research literature rooted in Afrocentric values. To this
point, further research related to the interplay of resilience and the social environment in this
particular context of albinism is needed.
Concerning the role of nursing, globally, research related to how nursing can best support
persons with albinism would be useful in advocating for best practices for this marginalized,
minority group. Research should include how to implement albinism education in nursing
programs as well as in professional development with employers. As leaders in health care and a
profession that holds social justice, equity, and ethical care as central values, globally, nursing
research has an important role to play in advancing the human rights of persons with albinism

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within our own profession. Driven by their voiced experiences and analysis of their own
situations, recommendations for nursing need to be articulated, exploring how we, as global
leaders in health care, can best promote the cause of mothers of children with albinism
globally—ensuring access to health and social services as well as health-related knowledge
associated with albinism. As mandated by the ICN, nurses have an important role to play in
responding to human rights violations and are responsible to raise a voice towards equitable
policy and practice (ICN, 2011, 2018).
Leadership
Government accountability and reconciliation with families impacted by albinism are
needed. The Tanzanian government response to violent attacks against children with albinism
failed to include key factors: the collection and safekeeping of key demographic information of
children brought to and housed in government holding centres; contact information for
parents/relatives; perspectives and explicit consent from parents; and, most important to the
current situation, plans for reuniting families and ensuring safety at home. Government officials
should have consulted families and engaged them in the process. While violence and risks to
security are the root cause of family separation, the government response was poorly planned
and chaotically executed. Accountability is necessary to rebuild trust and ensure that the solution
for protecting persons with albinism in the country does not continue to be segregation and
isolation.
This gap left by a troubling government response to the crisis in 2008 has been filled by
CSOs and NGOs like those mentioned in this study. While imperfect, the response of child
sponsorship was necessary and, without a doubt, has provided better care and education for

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children with albinism. What remains necessary to reconcile, however, is how the original
government response and subsequent intervention by NGOs unwittingly further compromised
particular rights of the child and parent. Separation as the answer, particularly when there is no
formal consent given by parents, is troubling and must continue to be addressed. This work can
begin by engaging mothers in all levels of programming and implementation: ensuring a familycentred approach in framing the work, programming, and values at the organizational level.
Indeed, what happens if we shift the narrative to the voice of mothers who know what their
children need?
The work of Ero in her UN mandate has advanced the cause of persons with albinism
worldwide. The UN and Pan African initiatives should remain engaged, listening to the voices of
mothers impacted. Their work should continue to be intersectoral, engaging various stakeholders,
including building capacity at the local level with community leadership and beyond at the
regional, national and international levels.
Chapter Summary
This chapter provided concluding remarks, including a summary of the study,
demonstrating how this focused critical ethnography explored the experience of mothering
children with albinism in Tanzania. Key conclusions drawn reflect the various compounding
factors influencing the health and well-being of mothers and their child(ren) with albinism,
including access to services; the stigma and discrimination that mothers face the moment they
deliver a child with albinism; the minimal resources and supports available; and the importance
of mothers’ voices in the narratives of albinism. Relevant recommendations were provided from
a nursing lens, including those for policy, NGOs/CSOs, health and social services, education,

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research, and leadership. This study, in concert with the voices of all of the mothers impacted by
albinism involved, argues for and provides clear rationale for a more inclusive society with
services that better empower and support impacted women and their children to thrive.

Figure 15. The “kitchen” off of a main house where women roast foods on an open wood fire.
With laundry hanging up alongside this structure, this photo depicts some of the daily physical
work mothers are engaged in in some parts of Tanzania.

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Appendix A: Literature Review Search Strategy
Inclusion/Exclusion Criteria:
Inclusion

Peer Reviewed; English, French; Masters or PhD
Thesis; Substantive discussion on concept of
mothering/child rearing (minimum of 100 words);
Grey Lit and Other (Book by Kromberg)
Not peer reviewed; Not in specified langlue; no
substantive discussion on albinism and
mothering/parenting; Bachelor’s level thesis

Exclusion

Keyword Search Strings
AND
Africa* OR
Tanzania*
OR SubSahara* OR
Malawi OR
Zimbabw*

AND
(Child* OR infant
OR baby OR
babies OR
adolescen* OR
youth)

AND
(albinism
OR albino)

Mother* OR parent*
OR rais*

Google Scholar: (Will screen first 4 pages of results only)
Total Results
2,180

Results
2

2. albino children tanzania
mother

2,050

1 (Lynch Lund Massah
(2014) noted Jan 19)

3. albinism children
tanzania mother

848

1 (MaybeYES 19Jan2019:
Butler-Jones, C. (2013). The
impact of resilience on helpseeking behavior among
people with albinism in
tanzania (Doctoral
dissertation, The Chicago
School of Professional
Psychology). )

4. albinism children
tanzania parent

1,140

1

Duplicates:
YES:

2
3

1. albino children tanzania
parent

MOTHERING AND ALBINISM IN TANZANIA

Search #1
Database

Search Completed for Articles up to February 2020
Notes

Library One
Search (25 Aug
2018)

Using short albinism string (lost key Kromberg article using long
albinism string) & using “Africa OR Tanzania OR Sub-Saharan
Africa OR Malawi”; RIS files emailed to my account for upload
into EndNote
4 with search as above; 1 using long albinism string
(MH "Albinism/ED/EC/EI/HI/LJ/MO/NU/OG/PF/RH") AND
(MH "Mothers") AND (MH "Africa") AND (MH "Child") ; also
tried (MH "Albinism/ED/EC/EI/HI/LJ/MO/NU/OG/PF/RH")
AND (MH "Mothers") AND (MH "Tanzania") AND (MH
"Child") will use “Africa” for broader results? (both saved to
RIS)
(Africa OR Tanzania OR Sub-Saharan Africa OR Malawi )
AND ( (Child* OR infant OR baby OR babies OR adolescen*
OR youth) ) AND ( (albinism OR albino) ) AND ( Mother* OR
parent* OR rais* )

CINAHL
CINAHL Subject
Headings

MEDLINE

PsycInfo

PsycInfo
Thesaurus

Academic Search
Complete

Academic Search
CompleteSubject Headings
EMBASE

Total Before
Duplicates
Removed:
Duplicates
Total After Dups
Removed:

234

Total
Results
74

4
90

11

Africa OR Tanzania OR Sub-Saharan Africa OR Malawi ) AND
( albinism OR albino ) AND ( Mother* OR parent* OR rais* )
AND ( Child* OR infant OR baby OR babies OR adolescen*
OR youth )
((DE "Parenting") OR (DE "Mothers") OR (DE "Childrearing
Attitudes")) AND (DE "Albinism") AND (DE "African
Cultural Groups")  *”initial query did not yield
results”…message
Africa OR Tanzania OR Sub-Saharan Africa OR Malawi ) AND
( Child* OR infant OR baby OR babies OR adolescen* OR
youth ) AND ( Mother* OR parent* OR rais* ) AND ( albinism
OR albino

4

(DE "ALBINOS & albinism") AND ((DE "MOTHERS") OR
(DE "CHILD rearing")) AND (DE "CHILDREN") AND (DE
"TANZANIANS")
Africa* OR Tanzania* OR Malawi* OR Zimbabw* OR SubSaharan* AND ( (Child* OR infant OR baby OR babies OR
adolescen* OR youth) ) AND ( (albinism OR albino) ) AND
( Mother* OR parent* OR rais* )

8

73

3

3

270

60
210
No: 187 +1
Yes: 22

MOTHERING AND ALBINISM IN TANZANIA

Appendix B: PRISMA Diagram of Screening Methodology (Moher et al., 2009)

235

MOTHERING AND ALBINISM IN TANZANIA

236

Appendix C: Sample of Literature Review Matrix

Article

Geographica
l region of
focus

Aquaron, R., Djatou, M.,
& Kamdem, L. (2009).
Sociocultural aspects of
albinism in Sub-Saharan
Africa: Mutilations and
ritual murders committed
in East Africa (Burundi
and Tanzania). Medecine
Tropicale: Revue Du
Corps De Sante Colonial,
69(5), 449-453.

Burundi,
Cameroon,
Tanzania

Baker, C., Lund, P.,
Nyathi, R., & Taylor, J.
(2010). The myths
surrounding people with
albinism in South Africa
and Zimbabwe. Journal
of African Cultural
Studies, 22(2), 169-181.
Braathen, S. H., &
Ingstad, B. (2006).
Albinism in Malawi:
Knowledge and beliefs
from an African setting.
Disability & Society,
21(6), 599-611.
doi:10.1080/0968759060
0918081
Bradbury-Jones, C.,
Ogik, P., Betts, J., Taylor,
J., & Lund, P. (2018).
Beliefs about people with
albinism in Uganda: A
qualitative study using
the common-sense
model. PloS One, 13(10):
e0205774

Focus of Article

Report that "presents an
overview of the many
sociocultural prejudices
confronting albinos and
their parents in SubSarharan Africa at each
stage of life (infancy,
adolescence, and
adulthood)" (p. 449).

Method

Sample -participants

Non-empirical
Analysis

n/a

South Africa Examines how
and
continued myth and
Zimbabwe
belief surrounding
albinism impacts the
personal identity and
social acceptance of
PWAs

Non-empirical
(Pathography)

n/a

Malawi

In Malawi, what
knowledge, beliefs, and
behaviors do PWA and
their family members
have about albinism?

Qualitative

(n = 25) PWA
and their
family
members

Uganda

Explored “the links
between beliefs, myths,
traditions and
positive/negative
attitudes that surround
people with albinism in
Uganda” (p. 1); inside
and outside
perspectives

Qualitative

(n = 73)

MOTHERING AND ALBINISM IN TANZANIA

237

Brocco, G. (2015).
Labeling albinism:
Language and discourse
surrounding people with
albinism in Tanzania.
Disability & Society,
30(8), 1143-1157.
doi:10.1080/09687599.20
15.1075869

Tanzania

Language and
marginalization of
persons with albinism
in Tanzania

Qualitative:
Ethnography

(n = 28) PWA
in villages in
Kilolo district,
Tanzania. 13
males, 15
females. Ages:
7-70

Brocco, G. (2016).
Albinism, stigma,
subjectivity and globallocal discourses in
Tanzania. Anthropology
& Medicine, 23(3), 229243.
doi:10.1080/13648470.20
16.1184009

Tanzania

"This paper examines
the subjectivity of a 28year -old Tanzanian
woman with albinism
in relation to both
stigmatization and
acceptance within her
family and community
settings" (p. 230).

Qualitative:
Ethnography

(n = 8)
28
year old
woman and 7
other
informants
with the
congenital
condition

Bryceson, D. F., Jønsson,
J. B., & Sherrington, R.
(2010). Miners' magic:
Artisanal mining, the
albino fetish and murder
in Tanzania. The Journal
of Modern African
Studies, 48(3), 353-382

Tanzania

“Through the concept
of fetish creation, this
article interrogates the
agency of those
involved in the
murders: the miners
who purchase the
albino charms, the
waganga healers…who
sell the charms, and the
albino murder victims”
(p. 354); explores the
meso, macro, micro
context in which
murders are taking
place

Non-empirical
Analysis

n/a

MOTHERING AND ALBINISM IN TANZANIA

238

Burke, J., Kaijage, T. J.,
& John-Langba, J.
(2014). Media analysis of
albino killings in
Tanzania: A social work
and human rights
perspective. Ethics and
Social Welfare, 8(2), 117134.
doi:10.1080/17496535.20
14.895398

Tanzania

"The aim is to explore
the involvement of
various social actors in
violating, or protecting,
the right of people with
albinism, as well as
strategies of preventing
and responding to the
violence. These
explorations are guided
by a human rights
framework” (p. 118);
What is the role of
social work(ers) in
addressing the human
rights violations of
PWA in Tanzania?

Content
Analysis

(n = 274);
media analysis
of 121 English
articles and
153 Swahili
articles

Butler-Jones, C. (2013).
The impact of resilience
on help-seeking behavior
among people with
albinism in Tanzania
(Doctoral dissertation).
Retrieved from ProQuest
LLC. (UMI 3599490)

Tanzania

Resilience and helpseeking among women
with albinism

Qualitative

n=25 (women
with albinism)

Corn, A. L., & Lusk, K.
E. (2018a). An analysis
of parents' reports on
educational services for
their children with
albinism. Journal of
Visual Impairment &
Blindness, 112(6), 667682.
Corn, A. L., & Lusk, K.
E. (2018b). Reports from
parents about medical
and low vision services
for their children with
albinism: An analysis.
Journal of Visual
Impairment & Blindness,
112(6), 655-666.

USA

Explores information
and services related to
the education of
children with albinism
from the perspective of
parents of children with
albinism in the USA

Quantitative

(n = 223)

USA

Explores information
and services related to
medical care and low
vision care from the
perspective of parents
of children with
albinism in the USA

Quantitative

(n = 223)

MOTHERING AND ALBINISM IN TANZANIA

Cruz-Inigo, A. E.,
Ladizinski, B., & Sethi,
A. (2011). Albinism in
Africa: Stigma, slaughter
and awareness
campaigns. Dermatologic
Clinics, 29(1), 79-87.
doi:10.1016/j.det.2010.08
.015

Ehlers, V. (2002).
Republic of South Africa:
Policies and politics
guide nurses' application
of genetic technology in
public health settings.
Policy, Politics &
Nursing Practice, 3(2),
149-159.

Estrada-Hernández, N., &
Harper, D. C. (2007).
Research on
psychological and
personal aspects of
albinism: A critical
review. Rehabilitation
Psychology, 52(3), 263271. doi:10.1037/00905550.52.3.263

sub-Saharan
Africa

Aims to draw attention
to the dire situation of
PWAs in sub-Saharan
Africa, heavy focus on
access to health care
and preventative
measures re: skin CA.;
What do PWAs face in
sub-Saharan Africa in
terms of their
safety/security, health,
education, employment
and what is the role of
the national and
international
community?
South Africa Examines the impact of
policy and political
changes to genetic
services provided in
South Africa since
1994. Advocates for
education and system
wide support for
genetic nurses to
educate mothers and
families re: various
genetic conditions
including albinism
Global
"...a critical review of
(Africa,
the research literature,
Panama,
examining factors
Israel, USA, associated with
Canada)
adaptation to the
albinism condition" (p.
263).; Psychological
and personal adaptation

239

Non-empirical
Analysis

n/a

Policy Analysis

n/a

Systematic
Review

n/a

MOTHERING AND ALBINISM IN TANZANIA

Franklin, A., Lund, P.,
Bradbury-Jones, C., &
Taylor, J. (2018).
Children with albinism in
African regions: Their
rights to 'being' and
'doing'. BMC
International Health &
Human Rights, 18, 1-8.
doi:10.1186/s12914-0180144-8

Africa

Gaigher, R. J., Lund, P.
M., & Makuya, E.
(2002). A sociological
study of children with
albinism at a special
school in the Limpopo
province. Curationis,
25(4), 4-11.
Imafidon, E. (2017).
Dealing with the other
between the ethical and
the moral: Albinism on
the African continent.
Theoretical Medicine &
Bioethics, 38(2), 163177. doi:10.1007/s11017017-9403-2

Focus on Children and
young people with
albinism; Using
Thomas's socialrelational model of
disability alongside
discussion regarding
human rights, can we
"address the lacuna
surrounding the
psychosocial and daily
experiences of [PWA]”
(p. 1)?

240

Non-empirical
Analysis

n/a

South Africa Explores the social
context of children with
albinism and examines
how the condition
effects self, relationship
to others, and education
/ employment etc.

Mixed methods

(n = 32)

Africa

Philosophic
Inquiry

n/a

"To explore how the
uneasiness and
consequent indifference
about the other play out
on the African
continent with a
particular attention to
albinism" (p. 164);
Imafidon seeks to show
"how the African
community has
managed to establish
and promote
ontological and
normative ideologies
that help sustain the
(ill) treatment of
persons with albinism
as an other" (p. 164)

MOTHERING AND ALBINISM IN TANZANIA

Kiishweko, R. R. (2017).
Albinism in Tanzanian
higher education: A case
study (Unpublished
doctoral dissertation).
University of Sussex,
UK. Retrieved from
http://sro.sussex.ac.uk/id/
eprint/67375/1/Kiishwek
o%2C%20Rose%20Ruta
gemwa.pdf
Kromberg (2017).
Psychosocial and cultural
aspects of albinism. In J.
Kromberg & P. Manga
(Eds.) Albinism in Africa:
Historical, geographic,
medical, genetic, and
psychosocial aspects (pp.
172-198). London:
Elsevier Academic Press.
Kromberg, J. G., Zwane,
E. M., & Jenkins, T.
(1987). The response of
black mothers to the birth
of an albino infant.
American Journal Of
Diseases Of Children
(1960), 141(8), 911-916.

Lund, P. M., & Gaigher,
R. (2002). A health
intervention programme
for children with albinism
at a special school in
South Africa. Health
Education Research,
17(3), 365-372.

241

Tanzania

Experience of students
with albinism in Higher
Education in Tanzania

Qualitative

(n = 35)

Africa

Psychosocial and
cultural aspects of
albinism (related to
self-concept and social
relations with others)

Non-empirical
Analysis of the
Literature

n/a

Mixed methods

(n = 30)
mothers of
children with
and without
albinism

Mixed Methods:
Questionnaire
and interview

(n = 38)
children with
albinism

South Africa Response of "black
mothers" to their albino
infants over 15 months;
what is the response of
a "black mother to her
newborn albino
infant"? (p. 911). The
study followed the dyad
until the babe was 15
months
South Africa Explored the physical,
social-psychological,
and educational
experiences / concerns
of children with
albinism

MOTHERING AND ALBINISM IN TANZANIA

Lynch, P., Lund, P.,
Massah, B. (2014).
Identifying strategies to
enhance the educational
inclusion of visually
impaired children with
albinism in Malawi.
International Journal of
Educational
Development, 39, 216224.
Masanja, M. &
Magembe, K. (2015).
Power of stigma against
households’
efforts to maintain
households’ wellbeing
among households with
albinos in Tanzania.
International Journal of
Education and Research,
3(11), 95-108.
Morris, M., Glass, M.,
Wessels, T.-M., &
Kromberg, J. (2015).
Mothers' Experiences of
Genetic Counselling in
Johannesburg, South
Africa. Journal of
Genetic Counseling,
24(1), 158-168.
doi:10.1007/s10897-0149748-x

242

Malawi

Educational inclusion
of children with
albinism (focus of
visual impairment)

Tanzania

Stigma and household
Qualitative
well-being for
households impacted
by albinism in Tanzania

South Africa Explore how mothers
of children with Down
Syndrome, OCA and
Hemophilia B
experience genetic
counselling

Qualitative:
Participatory
Study

Qualitative

(n = 122)
Education
professionals,
children with
albinism and
their families

(n = 10)
households

(n = 13)
mothers of
children with
Down
Syndrome,
OCA or
Hemophilia B

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243

Mswela, M. M. (2019).
Tagging and tracking of
persons with albinism: A
reflection of some critical
human rights and ethical
issues arising from the
use of the global
positioning system (GPS)
as part of a solution to
cracking down on violent
crimes against persons
with albinism. PER:
Potchefstroomse
Elektroniese Regsblad,
22(1), 1-27.

South
Africa,
Malawi

Explores the ethical and Legal Analysis
legal concerns of using
GPS tracking methods
to protect PWAs in
South Africa from
violent attacks.

n/a

Mulemi, B. A., & Ndolo,
U. (2014). Albinism,
witchcraft, and
superstition in east
Africa:
Exploration of biocultural exclusion and
livelihood vulnerability
(Unpublished report)
[PDF]. Nairobi, KE: The
Catholic University of
Eastern Africa.
Pooe-Monyemore, M. B.
(2007). A model for
enhancement of selfconcept of people with
albinism. (D.Litt. et
Phil.), University of
South Africa (South
Africa), Retrieved from
https://ezproxy.student.tw
u.ca/login?url=http://sear
ch.ebscohost.com/login.a
spx?direct=true&db=ccm
&AN=109851170&site=
ehost-live Available from
EBSCOhost ccm
database.

Tanzania

“This study explores
and examines the
implications of
witchcraft beliefs and
superstition for
livelihood security of
PWA” (p. vi).

Qualitative,
ethnography

(n = 50)

Qualitative

(n = 15)
consisting of
twelve
females and
three males
with albinism,
aged between
18 and 48

Gauteng
Self-concept of people
Province in
with oculocutaneous
South Africa albinism

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244

Pooe-Monyemore, M. B.
J., Mavundla, T. R., &
Christianson, A. L.
(2012). The experience of
people with
oculocutaneous albinism.
Health SA Gesondheid,
17(1), 1-8.
doi:10.4102/hsag.v17i1.5
92
Reimer-Kirkham, S.,
Astle, B., Ero, I.,
Panchuk, K., Dixon, D.
(2019). The influence of
spiritual and cultural
practices on health and
healthcare of persons
with albinism: A scoping
review. Disability &
Society, 34(5), 747-774.

South Africa

Psycho-social
experiences of persons
with albinism

Qualitative

(n = 15)

Global

“To establish the
current state of
knowledge on albinism,
spiritual and cultural
practices, and
implications for health
and health services” (p.
747).

Scoping Review

(n = 40)
articles
reviewed

Shewedi, S. E. (2011).
Parents' negative attitude
towards the education of
their special needs
children in Tanzania: The
case study of Moshi
selected integrated
primary schools
(Unpublished master's
thesis). University of Dar
es Salaam, Tanzania.
Taylor, J. S., & Lund, P.
(2008). Experiences of a
feasibility study of
children with albinism in
Zimbabwe: A discussion
paper. International
Journal of Nursing
Studies, 45(8), 12471256.

Tanzania

Explored parents’
attitudes towards
educating their children
with special needs
(including albinism).
Data collected from
parents and educators

Qualitative

(n = 163)

Zimbabwe

Explored the overall
feasibility of
“undertaking a study on
children with albinism
[specifically, their
psychosocial and
welfare needs] in
Zimbabwe…” (p.
1247).

Feasibility
study

n/a

MOTHERING AND ALBINISM IN TANZANIA

Taylor, J., Bradbury‐
Jones, C., & Lund, P.
(2019). Witchcraft‐
related abuse and murder
of children with albinism
in sub‐Saharan Africa: A
conceptual review. Child
Abuse Review, 28(1), 1326. doi: 10.1002/car.2549

sub-Saharan
Africa

Duri, F. P. T., &
Makama, A. (2018).
Disabilities and human
insecurities: Women and
oculocutaneous albinism
in post-colonial
Zimbabwe. In M.
Mawere & A.
Nhemachena (Eds.),
Rethinking securities in
an emergent
technoscientific new
world order: Retracing
the contours for Africa’s
hi-jacked futures (pp. 77–
110). Bamenda, CM:
Langaa RPCIG.

Zimbabwe

Conceptual review of
research related to
witchcraft-related abuse
and murder of children
with albinism; explores
the use of an integrated
framework of
otherness,
watchfulness, and
agency
Explores the
experiences of
Zimbabwean women
with albinism as “one
of the most vulnerable
sections of the
population” (pp. 77)

245

Conceptual
Review of
Literature

n/a

Book Chapteranalysis of
literature

n/a

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246

Appendix D: NVIVO Literature Review Codebook
Node Name

Description

A. Mothering & Albinism

Files

References
0

0

5

12

A2. Experience of girls with
albinism

2

3

A3. Pregnancy (experience)
of woman with albinism

0

0

A4. Delivery of child with
albinism

9

16

A5. Post Partum period of
mother who has a baby with
albinism

1

5

A6. Partner Spouse Support

5

14

12

30

B. Support- Family,
Community, Gov't, NGOs

0

0

B1. Family dynamics (how
mom and babe are treated
by family and in-laws)

12

33

A1. Experience of women
with albinism

A7. Experience of Mothers

Primary concerns and experiences

Mother’s perspective

B2. Receptiveness in
community

How does the home community receive this
dyad

6

10

B3. Community Support

What kind of supports do the community
provide? Cultural practices and/or intentional
supports

3

4

B4. Government support
and resources

3

4

B5. NGO & CSO support
and resources

2

4

C. Influences on the
experiences of mothering
children with albinism

0

0

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247

C1. Social Determinants of
Health

0

0

C1a. Poverty

6

8

C1b. Gender

7

11

C1c. Disablism
(discrimination)

8

14

C1d. Sociocultural views
(myth, stigma)

7

17

3

6

3

6

10

14

C1h. Employment

3

7

C2. Social constructions of
womanhood (African
Womanism)

4

7

4

9

D. Access to H & SS

0

0

D1. Community Lead or
Grassroots Level

1

1

D2. Government

6

6

D3. NGO & CSO

4

6

D4. Health related
knowledge and education
(access to)

9

16

E. Threats to HR and Health

0

0

E1. Myth-Stigma & Health

7

12

E2. Discrimination &
Health

5

6

C1e. Physical Location

rural vs urban; country of origin;
neighbourhood,

C1f. Availability of H & SS
C1g. Education

C3. Faith, Spirituality,
Religion

Belief in higher power- linked with
resilience/coping/way of explaining albinism as
will of God vs. harmful myth

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248

E3. Gender Specific Threats
& Health

7

10

E4. Violence and Health

6

15

F. Everyday Lives of
Mothers of Children with
Albinism

0

0

3

3

F2. Parenting Strategies

5

6

F3. Parenting Struggles

8

22

F1. Primary Concerns

primary concerns of mothers who are caring for
a child(ren) with albinism

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249

Appendix E: Interview Guides (English and Kiswahili)
INTERVIEW GUIDE #1 (Sample Questions)
KEY INFORMANTS and COMMUNITY MEMBERS
1. In what ways have you engaged the experiences of women with children, who have
albinism? or mothers with albinism, in your work? (ask for story)
2. From your experience working with persons with albinism, what do you feel are the
primary concerns of mothers affected by albinism?
3. What have you noticed about parenting strategies employed by these mothers?
4. How does having a child with albinism, or having albinism themselves, fit in with other
life circumstances of these women?
5. How do mothers impacted by albinism access community services?

MWONGOZO WA MAHOJIANO #1 (MASWALI YA SAMPULI)
KWA WATOA HABARI WAKUU NA WANAJAMII
Madhumuni ya mradi huu ni kuelewa namna malezi na ualbino yanahusiana, hasa kwa kina
mama ualbino au walio na watoto wenye ualbino
1. ni kwa namna gani umeweza kushirikisha uzoefu wa kina mama walio na ualbino au kina
mama walio na watoto wenye ualbino kazini ?
2. Kutokana na tajiriba yako ya kufanya kazi na watu wenye ualbino ni maswala yapi ya
kimsingi yanawaathiri?
3. Ni mikakati ipi ya malezi imewekwa na kina mama hawa?

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250

4. Je kina mama hawa wenye ualbino au wenye watoto wenye ualbino wanajitosheleza vipi
kwenye maisha ya kina mama?
5. Je kina mama wanaoathiriwa na ualbino hupata hudumma za kijamii namna gani

INTERVIEW GUIDE #2 (Sample Questions)
MOTHERS OF CHILDREN WITH ALBINISM
1. Tell me about your family.
2. What is it like having a child with albinism?
3. Did you know that you might have a child with albinism? Maybe because a relative on
your side or your husband’s side?
4. How did you feel when you learnt that your baby had albinism? What were the first few
days like?
5. What was your experience during the first few months of mothering a child with
albinism?
6. Can you describe the day-to-day care of your child with albinism [use child’s name]? [if
they have other children:] How is raising [child’s name] different from parenting your
other children?
7. I am interested in how being a mother (or a woman) of a child with albinism might be
different than for a father (or a man). With a child with albinism, how are the father’s
experiences different from the mother?
8. Tell me about any beliefs within your community or family about albinism, such as why
it happens or what it means.

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251

9. What resources (or help in the community) have helped you care for your child with
albinism?
10. What would help support mothers of children with albinism? Is there something that has
been helpful in your experience? Anything that has been unhelpful?

MWONGOZO WA MAHOJIANO #2 (MASWALI YA SAMPULI)
KINA MAMAWENYE WATOTO WENYE UALBINO
1. Nieleze kuhusu familia yako?
2. Je maisha yako vipi kutokana na kumpata mtoto Mwenye ualbino?
3. Je ulikisia kwamba waweza kumpata motto Mwenye ualbino aidha kutokana na kuwa na
jamma Mwenye ualbino au upande wa kina Bwana?
4. Ulihisi vipi ulipogundua kuwa mtoto wako ana ualbino? Siku za mwanzo mwanzo
zilikuwa vipi?
5. Ni yapi uliyopata kuyajua miezi ya kwanza ya malezi kwa mtoto Mwenye ualbino?
6. Je waweza fafanua kwa kina malezi ya siku kwa siku ya mtoto wako Mwenye ualbino
(mtaje jina). (iwapo ana watoto wengine). Ni tofauti gani iliyopo kati ya malezi ya mtoto
huyu na wengine?
7. Ningependa kujua tofauti ya mama wa mtoto ualbino na baba. Je ni yapi anayokumbuna
nayo baba wa mtoto ualbino ?
8. Nieleze miiko na imani zilizoko katika jamii na familia yako kuhusu ualbino ; kwa
mfano mbona au inatokeaje?

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252

9. Ni rasilimali (au msaada upi kutoka kwa jamii) umeweza kupata kutoka kwa jamii kulea
mtoto wako Mwenye ualbino?
10. Je ni msaada upi wameweza kupata kina mama wenye watoto wenye ualbino? Je
kutokana na maisha yako, je kunalo umeweza kunufaika nalo? Je ni lipi haujaweza
kunufaiko nalo?

INTERVIEW GUIDE #3 (Sample Questions)
MOTHERS WITH ALBINISM
1. Tell me about your family.
2. What is it like being a mother with albinism? How does albinism affect your parenting?
Your family life? (ask for story)
3. What are your main worries as a mother with albinism? How do you handle these
worries?
4. I am interested in how being a mother (or a woman) with albinism might be different than
for a father (or a man) with albinism. How are the father’s experiences different from the
mother?
5. Tell me about any beliefs within your community or family about albinism, such as why
it happens or what it means.
6. What resources (or help in the community) have helped you live with albinism?
7. What would help support mothers with albinism?

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253

MWONGOZO WA MAHOJIANO #3 (MASWALI YA SAMPULI)
KINA MAMA WENYE UALBINO
1. Nieleze kuhusu familia yako.
2. Je I vipi kuwa mama Mwenye ualbino? Yaathiri aje malezi yako? Na maisha ya familia
je? (muulize akupe hadithi yake)
3. Ni wasiiwasi au mashaka yepi makuu unayoyapitia kama mama Mwenye ualbino? Je
wayatatua vipi?
4. Ningependa kujua tofauti ya maisha ya mama mwenye ualbino Mwenye na baba
Mwenye ualbino. Je ni nini kilicho tofauti katika maisha ya mama na baba Mwenye
ualbino?
5. Nieleze miiko na imani zilizoko katika jamii na familia yako kuhusu ualbino; kwa mfano
mbona au inatokeaje?
6. Je Ni rasilimali (au msaada ) upi umeweza kupokea kutoka kwa jamii ambao
umekusaidia kuishi na ualbino?
7. Ni nini kinachoweza kusaidia kudhamini kina mama wenye ualbino?

MOTHERING AND ALBINISM IN TANZANIA

Appendix F: Confidentiality Agreement – Transcriptionist

254

MOTHERING AND ALBINISM IN TANZANIA

Appendix G: Confidentiality Agreement – Interpreter

255

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256

Appendix H: Fieldnote Guide

1. Note date and time of day
2. Describe location (Where am I?/What is the geographic setting?/What is the location in
relation to health and social services resources?/Is there transportation to and from location
and between location and resources?/What objects stand out within the location?/What is my
experience of being in the location?)
3. Who is present? (Who is not present?)
4. What is the participant’s body language during fieldwork/interview/focus groups?
5. What is/are the participant(s) doing during the interview/focus group (actions)?
6. What emotions are being expressed or observed?
7. What agenda might they have (motivation for giving me their time and story)?
8. Any sense of what is happening locally: social, political tensions? Is there anything I suspect
I may not be comprehending due to cultural differences or local particularities?
9. Describe my own sensory experience (noises, smells, what am I feeling in my body, (e.g., am
I tired, anxious, sad, overwhelmed, etc.)
10. Describe my reactions (physical, mental, emotional) to topics discussed or to what was
observed.

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257

Appendix I: Sample of Fieldnotes

28 March 2019
Day 2- Dar
Awake at 0300. Sitting on the balcony to type these notes at 0430 with a cup of coffee.
It is now 0615 and I am watching the sunrise over the Indian Ocean. Breathtaking. Can the
beauty of space and environment be hopeful in and of itself?
Male staff raking the beach volleyball court. Perhaps I don’t know enough about beach life to
judge the raking? It makes such little sense to me.
A morning jogger on the beach. I’m inspired!
0945: arrived at NGO office via Bajaji, Victor, we got a bit turned around and I realized just how
dependent I am on both the driver and google maps!
1000: met with Director- friendly greeting.
Everyone keeps telling me that I am “most welcome”…feeling unsure when to voice that a
meeting would be helpful. So I went ahead and suggested that a few of us meet to discuss the
research and the aim of the research—at this the director agreed and said “yes, that would be
very helpful.” I think I will need to suggest more… not assume that we are on the same page.
1100: First interview. P02 was so candid with me- as both an NGO staff and PWA herself her
information was holistic and grounded in both her own experience and her work experience as an
advocate for families impacted by albinism. There was laughter when there could have been
tears and yet an acknowledgement of the heaviness of this topic and the concerns around persons
with albinism. The stories she shared, the personal experience of walking down the road towards
home or the bus stop and the “jolts” she experiences when she hears someone behind her or
something in the bushes etc. This fear that she has internalized and carries with her- what keeps
her safe….this vigilance. She talked about her parents suddenly sending her and her siblings to
boarding school in 2011 and them never telling her why. 2011 saw a major spike in mutimurders of PWA in Tanzania- on reflection later she realized why they sent her to boarding
school: to protect her and her siblings. She talked about being thankful that her parents never told
her or showed their fear/concern…this would have been distracting to her and her studies. Notes
that she would not have been able to concentrate as she would have been worried about her
siblings and herself (herself mentioned as an afterthought). She discussed the myth that women
who have albinism are seen as a cure for illnesses/STIs/HIV- this apprehension to trust men…
“Okay, why are you approaching me?” further, fear that someone will attack and rape you as a
woman with albinism because of this. She notes the “jolt” occurring while she is home, while she

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258

is walking to the bus stop esp in the dark. Notes that the human rights violations affect the
psychological health of PWA- fear, constant vigilance.
Intersectional experience as both a female and as “other.”
Hearing her stories as a woman, as a friend of women with children, as an Auntie, as an
American, as a woman that has experienced trauma— I was teary and emotional. Lost for words.
Difficult to continue the interview at one point. Recognizing that my own experience of fearing
for my safety after a violation (break and entry of my home) and knowing what those “jolts” feel
like for me… how exhausting they are…how distracting and yet normal they become…
PERSPECTIVE shift. I can call 911 in Canada/US. I can install a security system. I can have my
cell phone at my bedside, ready to go. I can drive away in my car. ETC ETC. For women here,
most of these are not options. As this participant stated- even women/mothers who report to the
police- most are “exonerated due to lack of evidence to connect the accused to the crime.”
Also men as “in control” and as “head of the house” in Africa… mothers’ hands are tied. How
do they report their own spouse for abusing their child with albinism? African society as
“secretive”- don’t want to shame the family/expose the family.
Who is protecting women/mothers/PWA? What are the benefits of seeking protection or seeking
help/justice, when this is the response? How are mothers protecting their children in ways that
are not obvious? Thinking of literature re: IPV and abuse in homes—mothers creatively finding
ways to keep their children safe…
Also thinking of Trauma informed practice…
Interview 03:
1545- Afternoon (I am exhausted, feeling emotional still from the 1st interview, jet lag is kicking
in…I was worried about how this interview was going to go because of that)
We are in ‘my’ office at the NGO. I remember this time to move my chair and I sat across from
participant without the desk between us. Curious if there is any dynamic in meeting in ‘my’
space versus their space. They set it up this way, though.
Participant sat in front of me, leaning forward enthusiastically at times. She talked with her
hands a lot and mimicked how people sound when talking about albinism/asking
questions/feeling suspicious etc. She acted out conversations. Very engaging and engaged. She
sat with open arms, both feet on the floor, did not cross legs or arms—very open body language.
Appeared quite comfortable talking about the subject even when discussing her own experiences
as a PWA.
Interesting to hear her talking about “lazy mothers” versus “strong mothers”—I’m very
interested in unpacking this understanding/perception further. Almost an irritation or
annoyance/no time for mothers who are lazy and leave their children (abandon or leave them

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259

with other family like grandparents)… wondering if this is a cultural interpretation that is based
on behavior and actions versus theorized. Am I not understanding due to language- is her use of
the English word ‘lazy’ actually something different with different meaning in Swahili. I should
ask this question in follow up with Jane.
She expressed a great deal of pride in her upbringing- mother instilled confidence and selfesteem in her and her siblings. She knew when to be strict with them and when to be
gentle/empathetic/compassionate.
Motivation for sharing: As an NGO staff and PWA who is also a mother- sense of vested interest
in the topic and the research
Economic status
Rape of girls and boys- particularly when they are staying with grandparents/raised by
grandparents when they don’t have enough attention and protection.
During this interview my jet lag really kicked in and I was struggling not to yawn. I worried that
she would feel I was disinterested. At the end of the interview I did apologize and we talked
about jet lag- she was very understanding and did not seem at all offended.
I recognize that this tiredness likely impacted how I asked questions/probed further etcetera

Sharing Circle fieldnotes.

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Sharing Circle fieldnotes.

260

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Individual interview fieldnotes.

261

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262

Appendix J: Study Data NVIVO Codebook
Node Name
A. Vantage Point of Mothers

Description
Standpoint; Lived Experience; Day to Day

A1. Pathways to Resistance

Ungar et al. (2007): "Examine the
individuality of a [participant's] pathway to
resistance" (p. 305).

Files References
0
0
5

9

5

6

6

9

2

2

10

32

A14. Resilience & Courage

6

18

A15. Mothers as Advocates

3

3

A16. Grief

1

1

10

21

2

2

2

2

12

21

6

8

4

7

9

14

3

4

7

20

7

19

A10. Accepting Motherhood
& CWA
A11. Support of Other
Women Impacted by
Albinism
A12. Religion, Faith,
Spirituality
A13. Resources (Lived
Experience of)

Access to meaningful resources (quality,
quantity, and accessibility). Community,
NGO, Gov't. Lived experience of resources;
Impact of the availability or lack of
availability of resources ON DAILY LIFE.

A17. Parenting
A18. Household Income

Who is providing for the household? How are
mothers earning an income/providing for their
children?

A19. Stigma
Text Query for STIGMA
A2. Turning Points.
Serendipity of Opportunity
A3. Reaching Out
A4. Sacrifice

A5. Environment- DO NOT
USE
A6. Separation &
Reunification
A7. Burden of Worry OR
Mental Health Impact on
Mother

Increasing resilience/capitalize on strength &
resilience already present
Asking for help/ seeking services in the face
of discrimination/ostracism
In the interest of her children? e.g. leaving
community, work, getting creative to provide,
leaving her spouse/partner

MOTHERING AND ALBINISM IN TANZANIA

A8. Impact of Partner or
Spouse Response
A9. Alone & Isolated

263

11

31

8

13

B. Community Responses

0

0

B1. Social Influences

0

0

B1a. SDoH

13

32

B1b. African Ontologies

15

29

B1c. Faith Communities

1

1

B1d. Media

1

1

B1e. Community &
Neighbour Allyship
B1f. Broader Family
Response
B1g. Community Response

6

9

8

10

Response by broader community

9

17

B1h. Gender Roles

Identified gender roles, parenting roles.

9

12

0

0

12

24

5

7

7

8

10

22

9

25

3

19

1

2

B2h. Role of Social Workers

1

2

B3. Education

0

0

B3a. Access to Education for
CWA
B3b. Boarding School

5

10

7

19

B3c. Day School

3

3

B2. Access to H&SS
B2a. Inadequate or Limited
Access
B2b. Positive Interactions
with H & SS
B2c. Negative Interactions
OR Responses from HCPs

Responses of RNs/Midwives/Physicians to
women and their children impacted by
albinism

B2d. Role of NGOs or CSOs
B2e. Awareness of or
Understandings of Albinism
B2f. Perspectives of HCPs &
Social Workers
B2g. Genetic Counselling

Data re: mother's prior awareness of albinism

MOTHERING AND ALBINISM IN TANZANIA

B3d. Sponsored (NGO-1)

264

3

14

B3e. Positive Education
Experience
B3f. Negative Education
Experience
B3g. Education Aids

Positive teacher and schooling experiences

2

2

Negative teacher and/or schooling experience

1

1

vision aids, protective clothing, etc

0

0

B3h. Involvement of Mothers
in Schooling

How are mothers (parents) involved or not
involved in education/boarding school? Does
the school or NGO attempt to keep mother
and child well connected? Are mothers kept
informed of child's progress/needs etc.?
data re: teachers
responses/perspectives/beliefs

3

10

1

7

0

0

11

27

C2. Postpartum

9

15

C3. Preschool

5

8

10

37

C5. Young Adults

4

4

C6. Siblings or How the rest
of the family is impacted
D. Human Rights

7

10

0

0

17

40

1

1

D3i. Educators Perspective
C. Life Stages
C1. Labour & Delivery

C4. School Age

D1. Women & Children
(GENDER)

D10. Right to Social Security

Article 3: the equal right of men and women
to enjoy the rights in the ICESCR. Women
often suffer substantial and disproportionate
difficulties in securing human rights,
including economic, social and cultural rights.
Article 3 guarantees that men and women
possess precisely the same legal entitlement to
the rights set forth in the Covenant and that, if
necessary, special measures will be employed
by States parties to ensure that this position of
equality is attained.
Article 9: A large number of States do not
maintain adequate social security or social
insurance provisions under domestic laws
protecting people in circumstances such as old
age, disability, ill health or other situations not
allowing them to earn a decent living. The
Committee has devoted particular attention to
enjoyment of the rights provided for in article

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D11. Right to Protection and
Assistance for the Family

D12. Right to Health
D13. Right to Adequate
Standard of Living

D14. Right to Education

D15. Right to Protection of
the Family

D16. Right to Parental Care
& Protection

9 by women, older persons (General
Comment No. 6 (1995)),(6) and persons with
disabilities (General Comment No. 5
(1994)).(7)
Article 10: provides protection for the family,
mothers and children. It includes the right to
enter freely into marriage... Mothers are to be
accorded substantial protection before and
after childbirth. The Committee on Economic,
Social and Cultural Rights regularly requests
information from States parties as to whether
any particular groups of women lack such
protection.
Article 12: The right to the highest attainable
standard of physical and mental health
Article 11: . . . the right to housing, should not
be interpreted in a narrower restrictive sense
which equates it with, for example, the shelter
provided by merely having a roof over one's
head . . . Rather it should be seen as the right
to live somewhere in security, peace and
dignity . . . . (Para. 7.)
Article 13-14: These two articles guarantee all
children a right to free and compulsory
primary education, wherever they may live.
They also enshrine the right to equal access to
education and equal enjoyment of education
facilities; the freedom to choose education
and to establish educational institutions; the
protection of pupils against inhuman
disciplinary measures; and academic freedom.
Article 18 of the African Charter on the
Rights & Welfare of the Child: "The family
shall be the natural unit and basis of society. It
shall enjoy the protection and support of the
State for its establishment and development.
Article 19 of the African Charter on the
Rights & Welfare of the Child: "1. Every
child shall be entitled to the enjoyment of
parental care and protection and shall,
whenever possible, have the right to reside
with his or her parents. No chid shall be
separated from his/her parents against his/her
will...2. Every child who is separated form
one or both parents shall have the right to
maintain personal relations and direct contact
with both parents on a regular basis."

265

5

6

10

23

1

1

3

12

1

5

1

5

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D18. Right to Parental
Responsibilities

D19. Right to Protection
against Harmful Social &
Cultural Practices

Article20: "1. Parents or other persons
responsible for the child shall have the
primary responsibility for the upbringing and
development of the child and shall have the
duty: to ensure that the best interests of the
child are their basic concern at all times...; to
assist parents...and in case of need, provide
material assistance and support programmes
particularly with regard to nutrition, health,
education, clothing, and housing.
Article 21 of African Charter...: "State parties
shall take all appropriate measures to
eliminate harmful social and cultural practices
affecting the welfare, dignity, normal growth
and development of the child and in
particular: those customs and practices
prejudicial to the health or life of the child;
and those customs and practices discriminator
to the child on the grounds of sex or other
status"

D2. Legal safeguards
D20. Separation from Parents

D21. Protection from Sale,
Trafficking & Abduction

Article 25 of African Charter: ensures
children deprived of his or her family receive
alternative family care including fast
placement, placement in suitable initiation for
their care of children; reunite family when
possible;
Article 29 of African Charter: State parties
agree to take special measures to prevent: the
abduction, sale of, or traffic in children for
any purpose by any person including family

D3. HR as International
Covenant
D4. Violence or Threats of
Violence
D5. Access to Justice
D6. Family Involvement in
HR Violation
D7. Right to NonDiscrimination

Parent, Family member involved in carrying
out act of violence or threat against CWA for
financial gain
Article 2: The States Parties to the present
Covenant undertake to guarantee that the
rights enunciated in the present Covenant will
be exercised without discrimination of any
kind as to race, colour, sex, language,
religion, political or other opinion, national or
social origin property, birth or other status.

266

3

8

2

4

7

7

3

7

1

2

1

1

11

19

7

10

4

5

6

9

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D8. Right to Self
Determination (AGENCY)

3

5

3

4

E. Identified Needs by
Mothers
E1. Household support

0

0

8

14

E2. Capital & Income

5

6

E3. Groups

5

7

3

3

2

3

E6. Quality Education for
Children
F. Ideas Identified by CL or
Partners
F1. Financial Empowerment

2

2

0

0

5

5

F2. Holistic Family Support

5

11

1

1

3

3

2

6

3

9

1

1

D9. Right to Work

E4. Spread Understanding
Albinism Education
E5. Sponsorship

F3. Disparities between
MWA and Mothers of CWA
F4. Albinism Education for
the Whole Family

F5. Attune to
Intersectionality
F6. Maslow’s Hierarchy of
Needs
F7. All Org's Recognizing
their Unique Role

Article 1: All peoples have the right of selfdetermination. By virtue of that right they
freely determine their political status and
freely pursue their economic, social and
cultural development.
Article 6-7: The States Parties to the present
Covenant recognize the right to work, which
includes the right of everyone to the
opportunity to gain his living by work which
he freely chooses or accepts, and will take
appropriate steps to safeguard this right. the
right of everyone to the enjoyment of just and
favourable conditions of work

267

education for HCP, SS, lay people

Identifying how the experiences differ for
mothers with albinism versus for mothers who
have children with albinism
Ensuring opportunities for entire families
(including extended family) to receive
education re: albinism. Education that isn't
just from the mother.
How do organizations ensure that their
responses are attune to the intersectional
concerns of women

NGOs/CSOs/Gov't Orgs recognizing their
role in responding to the needs of women and
girls regardless of 'category' (i.e., not passing
her off to the next organization who deals

MOTHERING AND ALBINISM IN TANZANIA

268

with albinism simply because she has
albinism)
F8. SDG's

0

0

F9. Perspectives of NGO
Staff re mothering
G. Research Methodology

2

3

0

0

G1. Interpreter & Cultural
Liaison
G2. Recruitment &
Participants
G3. Setting

6

14

1

1

1

2

G4. Researcher Reflections

2

7

1

1

I. Group Coding

4

7

J. P25- Under the Tree

1

1

J1. Mothers with Albinism

3

5

K. Poignant & Important
Quotes for Writing

7

11

H. Question Marks

Data that is telling us something, but we don't
know what yet

MOTHERING AND ALBINISM IN TANZANIA

Appendix K: Trinity Western University REB Certificates of Approval

269

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270

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Appendix L: COSTECH Research Permit

271

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Appendix M: NIMR Ethical Clearance Certificate

272

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Appendix N: Consent Form for Mothers

273

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274

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275

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276

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277

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278

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279

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Appendix O: Consent Form for Key Informants

280

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281

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282

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283

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284

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285

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286

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Appendix P: Debrief Form for Mothers

287

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288

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Appendix Q: Debrief Form for Key Informants

289