Mothering and Albinism: Recommendations for disability rights in Africa

3.1 Discrimination

The study has revealed a near-universal experience of multiple and intersecting discrimination for persons with albinism and their families, with mothers bearing a disproportionate burden.10 Fueled by superstitious beliefs about albinism, mothers in our study faced discrimination along a continuum of severity from verbal insults, to reduced or hindered access to education and health services for their child, social exclusion, intimate partner violence, and abandonment. Discrimination started at the birth of an infant with albinism, from the reactions of healthcare providers, family, and community members, and continued across the life span of the child or mother with albinism. The discrimination was often based on the colouring of their child with albinism. Due to the hypervisibility of persons with albinism in contrast to the dominant Black citizenry in most parts of Africa, judgements and stigmatisation occur quickly. For example, a South African participant recalled her son being called ‘golden boy’ and ‘swine’ while a Tanzanian mother with albinism recalled growing up with dehumanising language such as ‘white monkey’ and ‘ghost’ (zeruzeru). Based on data from Tanzania and South Africa, mothers of children with albinism face multiple and intersecting discrimination on the basis of gender, disability, and race, resulting in reduced quality of life, heightened morbidity (for example, mental health challenges), and deprivation such as unstable incomes, food insecurity, and unstable housing and shelter. 11

3.2 Harmful practices

Mothers impacted by albinism report the extraordinary burden of care and surveillance that is required, especially to protect their children from

harmful practices.12 Harmful practices range from utterance of threats, to forceful removal of hair, trafficking in persons and in body parts, mutilation, and murder.13 In Tanzania, where there has been a relatively high incidence of reported attacks,14 particularly against children with albinism, many mothers in our study intervened in direct ways, for example, by accompanying their children to school, quitting jobs to be present with their children, and interrupting kidnapping attempts.15 In South Africa, where there have been fewer reported incidents, mothers of children with albinism in our ongoing study nonetheless describe a constant state of worry and unease.16

Harmful practices, particularly those forms that are accusations of witchcraft and ritual attacks, have been identified as a root cause of human rights violations perpetuated against persons with albinism and their families.17 In relation to harmful practices in general, the Protocol to the African Charter on the Rights of Women in Africa (the Maputo Protocol)18 and the African Charter on the Rights and Welfare of the Child (ACRWC)19 allude to and prohibit harmful practices. The Maputo Protocol lists some measures on how to respond, while the African Disability Protocol has greatly elaborated on the issue. The African Disability Protocol defines harmful practices taking a broad approach including ‘behaviour, attitudes and practices based on tradition, culture, religion, superstition or other reasons, which negatively affect the human rights and fundamental freedoms of persons with disabilities or perpetuate discrimination’.20 This open-ended list means that the Protocol may accommodate any other forms of emerging harmful practices. This is an important factor, given the dynamic and constantly evolving forms that these practices tend to take in the region with regards to persons with albinism. Article 11 of the same Protocol includes as harmful practices ‘omens’, ‘witchcraft’, ‘ritual killings’, ‘concealment’ and ‘derogatory language’.21 It also protects persons with disabilities from ‘exploitation, violence and abuse within and outside the home’.22 The Protocol proscribes negative representations and stereotyping of persons with disabilities, in both traditional and modern cultural activities, and through the media;23 and affirms the right to live in the community.24,25 The Convention on the Rights of Persons with Disability (CRPD) in article 8(1)(b) calls on states to combat stereotypes, prejudices and harmful practices relating to persons with disabilities.26 

3.3 Gender equality

For the mothers in our study, gender inequality operated in complex ways in their everyday lives and was sustained by entrenched constructions about masculinity and femininity in the family context. Gender-based violence and abandonment were experienced by many of the mothers in our study. Women were typically blamed for the birth of a child with albinism, with gendered speculations such as infidelity with a white man, or spiritualised interpretations such as albinism occurring as punishment from god(s), spirits or ancestors for an alleged wrongdoing by the mother.27 The perceived worth of mothers plummeted as they were deemed ‘not woman enough’28 either because they had albinism or because they gave birth to a child with albinism. Gender inequality meant that for many they were left without resources, power, and control, while being burdened with full responsibility for the welfare of their children.29

3.4 Stigma and access to services

Mothers from Tanzania and South Africa provided multiple accounts of how stigma interfered with their access to health upon having the child with albinism.30 Mothers were often not informed that their child was a child with a disability; rather the information tended to focus on the mystique of the child, leaving the mother without access to health information and support. There was often limited access to sunscreen to protect their children from skin cancer. Nearly all the support they received was self-generated through informal cooperation through which they nurtured resilience and built viable micro-enterprises, often with support from non-governmental organisations.31

6.1 The obligation to take specific measures

Multiple and intersecting discrimination for a small, marginalised group that is historically misunderstood, and which faces harmful practices of a particular and ‘stunningly vicious’48 nature, calls for adoption of specific measures. Specific measures are used in human rights to accelerate equality and provide advantages to a certain (often historically) underrepresented or marginalised group. While the measures are usually temporary, they can be permanent, depending on ‘context and circumstances, including by virtue of a particular impairment or the structural barriers of society’.49

As state parties to the CRPD, South Africa and Tanzania have a duty to adopt long-term, in-depth, and widespread measures to deal with the multiple and intersecting discrimination experienced by mothers of children with albinism. Such measures include education about the genetics of albinism and the human rights framework, specifically targeting health workers and community leaders, or other custodians of culture at the community level, targeting parents of children with albinism such as support groups for mothers impacted by albinism with the objective of facilitating the implementation of preventive and accountability measures where rights have been violated. Long term, specific measures are more effective at transforming cultural norms and structures that uphold human rights standards.

The need for specific measures was one of the lessons learned from the Millennium Development Goals (MDGs), an international agenda pursued by all member states of the UN, including Tanzania and South Africa. Many of these goals targeted only a percentage of the mainstream population and progress was measured with averages, instead of disaggregated indicators. Consequently, inequalities affecting specific groups and sub-groups were neither measured nor addressed, even though the situation of many of the groups was ‘deteriorating’.50 The Sustainable Development Goals (SDGs) which set out to continue the MDGs, contain a central pledge ‘to leave no one behind’.51

The objective of leaving no one behind includes a core aim of ending absolute poverty and discrimination by prioritising and fast-tracking action for those furthest behind. Affirmative action should be taken to ensure that ‘populations at risk of being left behind are included from the start’ and requires ‘enabling people and groups who are left behind to progress at a higher rate than those who are better off”.52

Fundamentally, leaving no one behind promotes the right to equality and non-discrimination, which is intrinsic to sustainable development. The adoption of specific measures for mothers impacted by albinism is in accordance with international human rights standards and obligations, and is instrumental in the universal pledge of leaving no one behind. The Regional Action Plan on Albinism53 is a compendium of specific measures that both Tanzania and South Africa as member states of the African Union have been called upon to adopt at the national level. 54

6.2 Recognition of discrimination by association

This commentary has implications for disability rights more broadly. First, the multiple and intersecting discrimination experienced by mothers of children with albinism reflect what can be the case for other mothers of children with disabilities. There is often a lack of recognition of multiple and intersecting discrimination or discrimination by association in the region, as well as a lack of effective mechanisms of legal redress and reparation. Those related to people with disabilities need to receive education on their own rights, and how disability rights laws, among others, protect them. As this research continues, there will be a need to conduct a deeper assessment of how member states have dealt with discrimination by association including emerging patterns from international and regional jurisprudence.

Second, because of these intersecting violations, the case of mothers impacted by albinism illustrates the need for multi-level, multi-vector analyses, instruments, and interventions for sustained change; bringing together national, regional, and international attention and intervention. While the multisectoral approach and the mainstreaming of disability rights has been in progress for many years, this process appears to be slower in the countries we have studied. There is a need to invest in mainstreaming disability rights in Tanzania and South Africa, and to assist in the transition of the concept of disability from the socio-cultural approach to the human rights approach.