• Eilionóir Flynn
  • BCL, PhD (University College Cork)
  • Established Professor of Law, School of Law; Director of the Centre for Disability and Policy, National University of Ireland Galway.

  • E Flynn ‘The rights of older persons with disabilities in the Protocol to the African Charter on Human and Peoples’ Rights: A critical analysis’ (2021) 9 African Disability Rights Yearbook 275-282
  •  http://doi.org/10.29053/2413-7138/2021/v9a13
  • Download article in PDF

1 Introduction

The Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa (the Protocol) represents a unique opportunity as the first legally binding regional expression of disability rights, adopted after the entry into force of the UN Convention on the Rights of Persons with Disabilities (CRPD). This paper will highlight how the Protocol addresses the intersection of older age and disability which is missing from the CRPD and other regional instruments and the extent to which it adds value and improves on standards in the CRPD as well as some areas of concern. Finally, the paper will consider what lessons can be drawn from this experience for other regions intending to adopt similar instruments, as well as look into global efforts to develop a new UN Convention on the Rights of Older Persons.

Before delving into an analysis of article 30 of the Protocol, which explicitly sets out the rights of older persons with disabilities, it is important to set the context for this discussion. The Protocol was finalised in 2018 but has not yet entered into force. Ratifications from 15 countries are required for the Protocol to enter into force, and at the time of writing no country has ratified the Protocol.1 Separately, the African Union adopted a Protocol to the African Charter on Human and Peoples’ Rights

on the Rights of Older Persons in 2016, which has also not entered into effect, only receiving two ratifications out of the required 15.2 That Protocol also includes an article on older persons with disabilities.3 However, that article is less detailed than article 30, and so will not be the main focus of the present discussion; although possible conflicts of interpretation between the two protocols will be addressed as an area of concern.

A full exploration of the drafting history of the 2018 Protocol is beyond the scope of this paper, however, there are some points worth noting as relevant to this discussion. The first is the participation of organisations of persons with disabilities in the drafting process;4 mirroring to some extent the participatory drafting approach of the CRPD.5 Second, is the explicit acknowledgement by the drafters of the gaps in rights protection which remained unaddressed in the CRPD, and the need to expand, rather than dilute, the application of universal human rights set out in the CRPD based on experiences in the African context.6 Finally, the experience of many of the state parties to this Protocol in reporting to the UN Committee on the Rights of Persons with Disabilities on their progress in implementing the CRPD in an African context. These interrelated standpoints and experiences set the context for the rights expressed in the Protocol as a whole and article 30 in particular.

The following section will address the key contributions made by article 30 of the Protocol, with specific reference to the topics of social protection, the intersection of gender, disability and older age, legal capacity, support in the community, violence, abuse and neglect, and sexual and reproductive health. Following this analysis, I reflect on the added value of article 30 and some areas of concern based on the regional context and potentially conflicting statements on rights in the two existing protocols. Finally, I consider the lessons which can be drawn from this experience for other world regions and for the international community as a whole moving towards a new UN Convention on the Rights of Older Persons.

2 Key contributions of article 30

2.1 Social protection

Article 30(2)(a) contains a specific obligation on states to ensure that older persons with disabilities can access social protection programmes on an equal basis with others. This statement is important as it does not mandate states to create new social protection schemes for older persons with disabilities but rather requires states to ensure that old age is not a cut off point for receiving social assistance. This approach is particularly relevant in contexts where persons with disabilities lose their entitlement to specific kinds of social assistance when they age, such as personal assistance;7 and are automatically transitioned to different funding schemes designed for older (non-disabled) people, which may not include the required type or level of assistance. As more African countries introduce cash transfers and other forms of social protection,8 this provision is likely to become more significant with time.

2.2 Intersection of gender, disability and age

Article 30(2)(b) requires states to take account of gender and age-related aspects of disability programming and resourcing in implementing the Protocol. This echoes to some extent the provisions of the CRPD, which contains specific articles on disabled women and children respectively,9 but is even more important in the context of older persons with disabilities, which of course was not the focus of a specific CRPD article. The specific needs of older men, women and non-binary people with disabilities will require particular attention from states, and this provision is a good example of how intersectional identities can be accounted for in an instrument focused on the rights of disabled people.

2.3 Legal capacity

Article 30(2)(c) echoes the earlier commitment to respecting the legal capacity of all persons with disabilities in article 7 of the Protocol and restates the application of this principle to older persons with disabilities. This restatement is particularly relevant in cases where a combination of older age and disability may be used to justify restrictions or denials of legal capacity, for example with respect to inheritance; which may also have a gendered dimension for widows.10 It reiterates the obligation on states to provide older persons with disabilities with all the support they may require to exercise their legal capacity on an equal basis with others - which again is important as some supported decision-making systems may exclude older persons (for example, people with dementia) from their remit.11

2.4 Services in communities

Article 30(2)(d) requires states to provide access to appropriate services to older persons with disabilities that meet their needs within their communities. This also echoes article 14 of the Protocol on the right to live in the community for all disabled people. Again, the restatement is important to ensure that older persons with disabilities are not obliged to leave their communities where they may be both providing and receiving support to their families and wider social networks in order to access services that meet their needs. While the term ‘services’ is not defined in the Protocol, it can be interpreted broadly, reading the Protocol as a whole, to include a wide range of services such as general health services (including physical and mental health), impairment or disability-specific services (including care and support), education, employment, and social services.12 Again, this obligation recognises that older persons with disabilities may require specific and distinct services that meet their unique needs, while also requiring that any services available to persons with disabilities continue to be provided as that population ages.

2.5 Violence, abuse and neglect

Article 30(2)(e) places an obligation on states to protect older persons with disabilities from violence, abuse and neglect. This also echoes existing obligations in the Protocol with regard to prevention and responses to violence, abuse and neglect; including in article 9 (liberty and security of person), article 10 (freedom from torture, or cruel, inhuman or degrading treatment or punishment), article 27 (women and girls with disabilities), and article 28 (children with disabilities). This provision further includes specific recognition of particular forms of violence, abuse and neglect experienced by older persons with disabilities, such as those based on accusations or perceptions of witchcraft, which also incorporates a gender-based dimension, as referenced in article 30(2)(b). While violence, abuse and neglect of older persons with disabilities is clearly a global problem, this article recognises regional particularities in how this may be experienced in the African context,13 and by calling out these harmful practices (which are also prohibited by article 11 of the Protocol), stands as an example of the added value which regional instruments can bring to the application of universal human rights norms to specific contexts.

2.6 Sexual and reproductive health

Finally, article 30(2)(f) requires states to ensure that older persons with disabilities have access to appropriate sexual and reproductive health information and services. This echoes the obligation placed on states to respect the sexual and reproductive rights of all disabled people as expressed throughout the Protocol in article 17 (right to health), article 26 (right to family), article 27 (women and girls with disabilities), and article 29 (youth with disabilities). The restatement of this right as one which applies to older disabled people is particularly important, as this issue is often overlooked issue for this specific population. Read together with the provisions on gender and age, as well as the provisions on violence, exploitation and abuse, this provides a holistic approach to ensuring the protection of the sexual and reproductive rights of older persons with disabilities.

Having considered the content of article 30 in-depth, the following section will further explore the unique contributions of this article of the Protocol and some areas of concern which may need to be addressed during its implementation.

3 Expanding the rights of older disabled people: Added value and areas of concern

As the first example of a legally binding regional instrument that was developed post-CRPD and builds on it, the Protocol demonstrates added value in this field by addressing issues which were omitted from the final text of the CRPD. It provides a useful example of how a more intersectional approach can be taken - at least on the intersections of gender, age and disability14 - when it comes to understanding and addressing rights violations specifically experienced by older persons with disabilities. However, it is also worth noting that there are other intersecting identities which are omitted from article 30 of the Protocol, especially membership of the LGBTQI+ community and membership of different ethnic or cultural groups or minorities. Overall, perhaps the most important added value of article 30 and indeed the Protocol as a whole, is its emphasis on regional specificity in naming rights violations experienced by this group and its recognition and prohibition of particular harmful practices which are often targeted at older persons with disabilities.15 This level of detail is usually not achieved in an international human rights instrument such as those negotiated at the UN, and shows the value of adopting regional instruments, where these are legally binding, and build on the universal rights already established, without diminishing them.

One area of concern, however, is the fact that there appears to be potential conflicts in terms of the expression of rights contained in this 2018 Protocol and the 2016 Protocol on the Rights of Older Persons mentioned in the Introduction. For example, the 2016 Protocol does not recognise as strongly the right of older people to remain living in their communities,16 compared to the recognition of this right for persons with disabilities, including older persons with disabilities in the 2018 Protocol. It remains to be seen how these potential conflicts can or will be resolved, including by the African Commission on Human and Peoples’ Rights, and the African Court on Human and Peoples’ Rights. Given the potential for conflicting interpretations by states when implementing both Protocols, it will be important to clarify that the higher level of rights protection offered by the 2018 Protocol should be adopted as the appropriate threshold for identifying rights violations.

Another issue of concern is the low take up of this Protocol in terms of state ratifications, as this will impact on the Protocol’s effectiveness as a tool for change at the domestic level. As mentioned in the Introduction, no state has ratified the 2018 Protocol at the time of writing and only two states have ratified the 2016 Protocol. This low level of ratification by states remains a concern - especially given the high levels of involvement of organisations of persons with disabilities in the negotiation and drafting of the Protocol text.

Moreover, there is a trend globally of scepticism towards a proliferation of new binding human rights instruments at the supra-national level.17 Grassroots advocates are often disappointed that these instruments are not effective in generating change at the domestic level in terms of concrete law reforms, or practical changes (including investment in supports and services) which impact on the day to day lives of the marginalised groups affected (including older disabled people). The Protocol itself acknowledges that many of the rights violations experienced by older disabled people are carried out by non-state actors, including individuals, families or community members.18 Many of these practices are not enshrined in law or policy or regulated by the state directly, and so it is unclear how precisely ratification of the Protocol can assist states to dismantle these practices - apart from providing a reporting mechanism under which states can be held accountable for their actions on these issues, or failure to address them. As with all human rights instruments however, the consequences for states that do not comply with the obligations contained in the Protocol are fairly minimal. Therefore, more action is needed at the domestic level to maintain political pressure on duty-bearers to implement the Protocol in full, including article 30 as it applies to older disabled people.

These unique contributions and issues of concern with article 30 and the Protocol as a whole provide useful insights for other regions seeking to introduce new binding instruments following the entry into force of the CRPD, as well as for advocates working to develop a new UN convention on the rights of older people, which are considered further in the following and final section.

4 Conclusion and lessons for further reform

The negotiation process of the Protocol demonstrates the importance of a grassroots-led approach where the rights-holders are at the forefront in developing the text of any new binding human rights instrument. However, the low take-up in terms of state ratifications also provides an important lesson for future reform efforts; that is, the need to ensure substantial state buy-in during the negotiation process. To do otherwise risks the creation of a very progressive human rights instrument that never enters into force if it does not receive the required number of ratifications. Another valuable insight from this experience is the importance of developing a monitoring framework with each new instrument that is both effective and feasible in ensuring state accountability for progress in implementation.19 Finally, perhaps the most important lesson from the Protocol itself is that it stands as a very strong example of a binding regional instrument which enhances rather than diminishes the rights contained in the CRPD. This stands in stark contrast with other regional developments post-CRPD, for example the draft Oviedo Protocol in the Council of Europe that actively undermines the CRPD prohibitions on forced psychiatric treatment. 20

As the UN Open-Ended Working Group moves forward in its work and campaign efforts intensify to secure a new UN Convention on the Rights of Older People,21 the valuable lessons learned from the experience of creating the Protocol need to be taken on board. Since the process at the UN remains ongoing it may be productive to use this time to reach consensus on some of the issues where conflicting views on rights violations between the rights of older people and the rights of disabled people (including older disabled people) arise - as evidenced by the different positions on community living expressed in the 2016 and 2018 protocols to the African Charter. As with the development of the Protocol, the negotiation of a new UN Convention on the Rights of Older People opens up new opportunities to recognise how universal rights should apply to this group in ways that were not able to be included in previous UN instruments, while expanding on, rather than diluting the rights protections provided in the CRPD. There is much that advocates at the UN can learn from their counterparts in the African region, especially about how to build on the binding instruments within that region to support arguments for how rights could be recognised in a new UN convention.

 

 


1. AU, Protocol to the African Charter on Human and People’s Rights on the Rights of Persons with Disabilities in Africa (2018) art 38(1); Protocol to the African Charter on Human and People’s Rights on the Rights of Persons with Disabilities in Africa ‘Status list’ (18 June 2020).

2. AU, Protocol to the African Charter on Human and People’s Rights on the Rights of Older Persons in Africa (2016) art 26(1); Status List (n 1).

3. Art 13 of the Protocol to the African Charter on Human and People’s Rights on the Rights of Older Persons in Africa.

4. F Mahomed, JE Lord & MA Stein ‘Transposing the Convention on the Rights of Persons with Disabilities in Africa: The role of disabled peoples’ organisations’ (2019) 27 African Journal of International and Comparative Law 335.

5. R Kayess & P French ‘Out of darkness into light? Introducing the Convention on the Rights of Persons with Disabilities’ (2008) 8 Human Rights Law Review 1.

6. O Onazi ‘Disability Justice in an African context: The human rights approach’ in O Onazi An African path to disability justice (2020) 39.

7. R Jessen ‘Transfer-related experiences of people with spinal cord injury living in low socioeconomic, independent living communities in Johannesburg as seen in the context of relationships of personal assistance − A phenomenological study’ Masters thesis, Disability Studies Division, University of Cape Town, 2019.

8. MP Opoku et al ‘Extending social protection to persons with disabilities: Exploring the accessibility and the impact of the disability fund on the lives of persons with disabilities in Ghana’ (2019) 19 Global Social Policy 225.

9. UN General Assembly, Convention on the Rights of Persons with Disabilities (2007) UN Doc A/RES/61/106 (24 January 2007) arts 6 & 7.

10. NE Groce, J London & MA Stein ‘Inheritance, poverty, and disability’ (2014) 29 Disability & Society 1554.

11. J Killeen ‘Supported decision-making: Learning from Australia’ (2016) Winston Churchill Memorial Trust https://www.wcmt.org.uk/sites/default/files/report-docu ments/Killeen%20J%20Report%202016%20Final_1.pdf (accessed 9 August 2021).

12. Onazi (n 6) 45.

13. FA Eboiyehi ‘Convicted without evidence: Elderly women and witchcraft accusations in contemporary Nigeria’ (2017) 18 Journal of International Women's Studies 247.

14. E Flynn ‘Disability and ageing: Bridging the divide? Social constructions and human rights’ in P Blanck & E Flynn (eds) Routledge handbook of disability law and human rights (2016) 211.

15. J Biegon & F Viljoen ‘The feasibility and desirability of an African disability rights treaty: Further norm-elaboration or firmer norm-implementation?’ (2014) 30 South African Journal on Human Rights 345.

16. Art 11 of the Protocol to the African Charter on Human and People’s Rights on the Rights of Older Persons in Africa requires states to ensure that ‘residential care is optional and affordable for older persons’; whereas art 30(2)(e) of the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa requires that ‘older persons have access to appropriate services that respond to their needs within the community’ and art 14 states that ‘every person with a disability has the right to live in the community’.

17. P Alston ‘The populist challenge to human rights’ (2017) 9 Journal of Human Rights Practice 1.

18. Preamble, arts 1 & 11 of the Protocol.

19. Secretariat of the African Decade ‘Architecture for an African disability rights mechanism’ (2011) Open Society Foundations; MA Stein & JE Lord ‘Monitoring the Convention on the Rights of Persons with Disabilities: Innovations, lost opportunities, and future potential’ (2010) 32 Human Rights Quarterly 689.

20. European Disability Forum and Mental Health Europe ‘Disability organisations urge Council of Europe to withdraw Additional Protocol of Oviedo Convention’ https://www.withdrawoviedo.info/join (accessed 9 August 2021).

21. J Childs ‘Elder rights are not nesting dolls: An Argument for an International Elder Rights Convention’ (2020) 11 Journal of International Aging Law & Policy 141.

  • Sheryl Reimer-Kirkham
  • School of Nursing, Trinity Western University, Langley, BC, Canada
  • Ikponwosa Ero
  • UN Independent Expert on the Enjoyment of Human Rights by Persons with Albinism, Geneva, Switzerland
  • Innocentia Mgijima-Konopi
  • Atlantic Fellow for Health Equity South Africa
  • Emma Strobell
  • School of Nursing, Trinity Western University, Langley, BC, Canada
  • Barbara Astle
  • School of Nursing, Trinity Western University, Langley, BC, Canada

  • S Reimer-Kirkham, I Ero, I Mgijima-Konopi, E Strobell, & B Astle ‘Mothering and Albinism: Recommendations for Disability Rights in Africa’ (2021) 9 African Disability Rights Yearbook 283-292
  •  http://doi.org/10.29053/2413-7138/2021/v9a14
  • Download article in PDF

Summary

1 About albinism

Albinism is a relatively rare recessive genetic condition that occurs worldwide in different forms. Oculocutaneous Albinism Type 2 (OCA2) is the most prevalent on the African continent.1 The prevalence of albinism in Tanzania is cited as 1 in 2 673;2 in South Africa as 1 in 3 900.3 Both parents must be carriers of OCA2 for their child to have the condition, of which there is a 1 in 4 chance in each pregnancy.4 Although both parents must transmit the gene, in various parts of Africa women largely carry the blame for this misunderstood condition.5 OCA2 results in a striking

physical appearance, particularly in the African context, where a partial or complete lack of melanin manifests as pale white skin, light hair, and sometimes light eye colouring.6 Lack of melanin causes a spectrum of visual impairments and heightened risk for developing skin cancer in the absence of meticulous sunscreen use and protective clothing.7 Concerns encountered by persons with albinism have increasingly been assessed from a human rights lens over the past decade, because of the levels of misunderstanding, discrimination, stigma and violence they endure, including harmful practices. This commentary focuses on the little-researched experiences of mothers impacted by albinism, whether with albinism themselves or with children with albinism.

2 Human rights research in Tanzania and South Africa

We draw on an ethnographic study in Tanzania and South Africa8 on mothers impacted by albinism, conducted by a researcher-advocate-policy network.9 Phase I of participatory fieldwork, involving sharing circles, in-depth interviews, and participant observation, was completed in Tanzania’s Dar es Salaam and Mwanza regions in 2019. Sixty-two participants engaged in the research, of which 17 were mothers of children with albinism, nine were mothers with albinism themselves, and 36 were key stakeholders. During the global pandemic, similar participatory data collection in South Africa (Phase II) has been replaced with virtual fieldwork in collaboration with the local research team. Through virtual platforms such as Zoom and WhatsApp, 13 mothers and key stakeholders have been interviewed as of August 2021. Along with the fieldwork, the researcher-advocate-policy network is active in community engagement, advocacy, and knowledge mobilisation.

3 Human rights situation of mothers impacted by albinism: Making the case for a human rights approach

Our research underscores the need for a human rights approach to address mothers’ experiences of discrimination, harmful practices, gender inequality, and lack of access to necessary services.

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

4 Using the Convention on the Rights of Persons with Disabilities (CRPD) and African Disability Protocol to address experiences of mothers impacted by albinism

The CRPD 32 which has been ratified by both Tanzania and South Africa - and its African counterpart, yet to come into force, the African Charter on Human and Peoples’ Rights on the Rights of People with Disabilities in Africa (African Disability Protocol) - if applied simultaneously can adequately33 respond to human rights violations experienced by mothers impacted by albinism. 34 According to the CRPD, state parties have a duty to prohibit ‘all discrimination’ 35 and this includes ‘discrimination by association’36 affecting mothers of children with disabilities. This warrants formal measures such as ‘effective legal remedies and sanctions in civil, administrative and criminal proceedings, including protection from any acts of discrimination carried out by private entities’, 37 as well as ‘specific measures’. 38 The African Disability Protocol similarly recognises the need for states to protect family members of persons with disabilities from indirect discrimination. Article 5(2)(b)39 of the Protocol also calls for specific measures in a manner analogous to the CRPD. 40 These treaties recognise the essential role that families, guardians and caregivers play in the lives of persons with disability. Similarly, the CRPD and the African Disability Protocol recognise multiple and intersecting discrimination. The CRPD’s preamble recalls the ‘difficult conditions faced by persons with disabilities who are subject to multiple or aggravated forms of discrimination’ 41 whilst the Protocol expresses concern at the multiple forms of discrimination people with disabilities face. 42

5 Unsettled issues

Associated racial discrimination experienced by mothers of children with albinism is often not addressed. The International Convention on the Elimination of Racial Discrimination (CERD) defines racial discrimination as ‘based on any distinction, exclusion, restriction or preference based on’ inter alia, colour

which has the purpose or effect of nullifying or impairing the recognition, enjoyment or exercise, on an equal footing, of human rights and fundamental freedoms in the political, economic, social, cultural or any other field of public life.43

The grounds for discrimination listed in article 1 do not need to be combined, and discrimination based on any one of these triggers are not only subject to the Convention, but also all the instruments applicable in the efforts to combat racial discrimination are equally applicable to persons with albinism.44 Recently there have been calls for the crimes against people with albinism to be considered hate crimes on the basis of colour.45 The Independent Expert has called for guidance from the CERD on this matter.46, 47

6 Recommendations

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.

7 Conclusion

This study on mothering and albinism underscores the importance of immediate ratification and implementation of the Africa Disability Protocol. This is crucial for the protection of people with disabilities, but particularly for people with albinism and their families in Africa, who are often vulnerable to harmful practices. Harmful practices are recognised in the Africa Disability Protocol as forms of human rights violations indefensible by culture or tradition.55 We have evidence from this study that harmful practices are often culturally entrenched actions that threaten the right to life and security of people with albinism and their family members, and constitute significant attitudinal and structural barriers to the transition from the socio-cultural approach to disability to the human rights approach. Overall, the emerging data from our research underscores the role of the Protocol as a strong complement to the CRPD, for the promotion of disability rights in these countries, and arguably in neighbouring countries with analogous concerns. Therefore, we argue for immediate ratification of the Protocol as an essential platform to promote and protect human rights of people with albinism, mothers and other family members, as well as all other people with disabilities.

 


1. JGR Kromberg et al ‘Types of albinism in the black Southern Africa population’ (2012) 89 East African Medical Journal 20 at 21.

3. JRG Kromberg et al ‘Children with oculocutaneous albinism in Africa: Characteristics, challenges and medical care’ (2020) 14 South African Journal of Child Health 50.

4. JGR Kromberg ‘Genetic counseling and albinism’ in JGR Kromberg & P Manga (eds) Albinism in Africa: Historical, geographic, medical, genetic, and psychosocial aspects (2018) 216.

5. S Reimer-Kirkham et al ‘Mothering, albinism and human rights: The disproportionate impact of health-related stigma in Tanzania’ (2020) Foundations of Science 12-13.

6. JGR Kromberg ‘Clinical features, types of albinism, and natural history’ in JGR Kromberg & P Manga (eds) Albinism in Africa: Historical, geographic, medical, genetic, and psychosocial aspects (2018) 28.

7. As above.

8. Research ethics clearance was obtained from the researchers’ universities in Canada; in Tanzania from the National Institute of Medical Research (NIMR) and COSTECH (Tanzania Commission for Science and Technology); and in South Africa from the University of Pretoria.

9. Ikponwosa Ero, the inaugural UN Independent Expert on the enjoyment of human rights by persons with albinism, initiated this network with an invitation to Reimer-Kirkham and Astle to conduct research on albinism, human rights, and cultural/spiritual beliefs and practices. Our acknowledgement to network members: www.motheringandalbinism.com .

10. UNGA ‘Women and children impacted by albinism’ Report of the Independent Expert on the enjoyment of human rights by persons with albinism, Ikponwosa Ero A/HRC/43/42 (24 December 2019). This was based on a survey of persons with albinism and their representative organisations as well as government and other CSOs and national human rights institutions.

11. Reimer-Kirkham et al (n 5) 16.

12. Ero et al ‘Women human rights defenders: A case of activism of mothers of children with albinism in Tanzania’ in Handbook of Critical Disability Studies in a Globalizing World (in review) 12-13.

13. UNGA ‘Report of the Independent Expert on the enjoyment of human rights by persons with albinism: A preliminary survey on the root causes of attacks and discrimination against persons with albinism’ (2016) A/71/255 (29 July 2016) paras 16 and 39-48.

14. UNGA ‘Report of the Independent Expert on the enjoyment of human rights by persons with albinism on her mission to the United Republic of Tanzania’ (2017) A/HRC/37/57/Add.1 (20 December 2017) para 52.

15. Ero et al (n 12) 12-13.

16. Interviews with South African participants, January 2021.

17. United Nations General Assembly (UNGA) ‘Achievements, accomplishments, challenges and the way forward: An overview of work on the mandate’ (2020) Report of the Independent Expert on the enjoyment of human rights by persons with albinism, Ikponwosa Ero A/HRC/46/32 21 (December 2020) para 65.

18. African Union, Protocol to the African Charter on Human and People’s Rights on the Rights of Women in Africa, adopted on 1 July 2003, entered into force 25 November 2005.

19. African Union, African Charter on the Rights and Welfare of the Child, adopted July 1990, at 12 and 13.

20. African Union, Protocol to the African Charter on Human and Peoples’ Rights on the Rights of People with Disabilities in Africa (2018) 4 https://au.int/sites/default/files/treaties/36440-treaty-protocol_to_the_achpr_on_the_rights_of_persons_with_disabili ties_in_africa_e.pdf (accessed 1 June 2021).

21. The African Disability Protocol (n 20) 9.

22. The African Disability Protocol (n 20) arts 8 and 9(2)(c).

23. The African Disability Protocol (n 20) arts 18 and 25(g).

24. The African Disability Protocol (n 20) arts 10 and 14.

25. The African Disability Protocol (n 20) arts 21,22 and 31.

26. UN General Assembly, Convention on the Rights of Persons with Disabilities (2007) UN Doc A/RES/61/106 (24 January 2007).

27. Reimer-Kirkham et al (n 5); UNGA (n 10).

28. Reimer-Kirkham et al (n 5) 9.

29. Reimer-Kirkham et al (n 5 above) 13.

30. Reimer-Kirkham et al (n 5).

31. Ero et al (n 12) 7-8.

32. CRPD (n 26).

33. The African Disability Protocol (n 20).

34. African Union ‘List of countries which have signed, ratified/acceded to the Protocol to the [African Disability Protocol]’ (2020) 1.

35. CRPD (n 26) art 5(2).

36. CRPD Committee, General Comment 6 (2018) on equality and non-discrimination (2018) UN Doc CRPD/C/GC/6 dated 26 April 2018, paras 17 and 18(b).

37. Para 22 of General Comment 6.

38. Para 28 of General Comment 6.

39. African Disability Protocol (n 20) 6.

40. See art 5(4), paras 28 and 29.

41. CRPD (n 26) 2.

42. African Disability Protocol (n 20).

43. UN General Assembly, International Convention on the Elimination of All Forms of Racial Discrimination, 21 December 1965, United Nations, Treaty Series, vol 660, p 195, art 1(1), entered into force 4 January 1969, 2.

44. Such as action plans and other measures taken to implement the Durban Declaration and Programme of Action. See Concluding Observations on the combined fourth to eighth periodic reports of South Africa, Committee on the Elimination of Racial Discrimination (5 October 2016) UN Doc CERD/C/ZAF/4-8 (2016) paras 20-21

45. UNGA (n 17 above) 17-19.

46. As above.

47. UNGA ‘Report of the Independent Expert on the enjoyment of human rights by persons with albinism on the expert workshop on witchcraft and human rights’ A/HRC/37/57/Add.2 (2018) para. 28.

48. OHCHR ‘Zeid calls for action after surge in “stunningly vicious attacks” on people with albinism in East Africa’ (2015) https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=15673&LangID=E (accessed 1 June 2021) para 2.

49. Para 29 of General Comment 6.

50. UNGA ‘Enjoyment of human rights by persons with albinism’ Report by the Independent Expert on the enjoyment of human rights by persons with albinism, Ikponwosa Ero A/73/181 (2018) 14.

51. United Nations Sustainable Development Group ‘Leave no one behind’ https://unsdg.un.org/2030-agenda/universal-values/leave-no-one-behind (accessed 1 June 2021).

52. E Stuart & E Samman ‘Defining “leave no one behind”’ (2017) Overseas Development Institute 2 and 3.

53. Actiononalbinism.org (accessed 1 June 2021).

54. ACHPR ‘Resolution on the regional action plan on albinism in Africa (2017-2021)’ ACHPR/Res.373(LX) (2017) 1 https://www.achpr.org/index.php?url=sessions/resolutions&id=415#:~:text=Endorses%20the%20Regional%20Action%20Plan (accessed 1 June 2021).

55. N 20, 4, 6 & 9.

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