• Mirriam Nthenge
  • Open Society Foundation Disability Rights Scholar 2014/2015
  • LLM (National University of Ireland, Galway)

  • M Nthenge ‘The Basic Education Act of 2013 as a tool for advancing early childhood development and education for children with disabilities in Kenya’ (2017) 5 African Disability Rights Yearbook 3-24
    http://doi.org/10.29053/2413-7138/2017/v5n1a1
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  The author would like to thank Dr Shivaun Quinlivan, Sarah Hofmayer and Elizabeth Kamundia for their constructive feedback.


Summary

The focus of this article is access to early childhood development and education (ECDE) by children with disabilities in Kenya. In general, ECDE has received minimal protection, if any, under international human rights law, including in the UN Convention on the Rights of Persons with Disabilities. The article argues that despite the gap in the international human rights framework on the rights of children with disabilities to access ECDE, domestically the Basic Education Act of 2013 provides an enabling framework to safeguard this right. To this end, the article argues that equality and non-discrimination, which underlie basic education law, provide a stronghold for advocating and implementing ECDE for children with disabilities in Kenya.

1 Introduction

Education is an empowerment and multiplier right. Access to quality education enables one to profit from other rights and is a prerequisite for individuals to have control over their lives.1 It is through education that individuals develop their human potential, sense of dignity and self-worth as well as their mental and physical abilities.2 Education builds a pathway for one to claim and advocate one’s rights. For instance, it facilitates the acquisition and enhancement of skills for one to enjoy one’s right to work.

Education also facilitates effective participation in political life. Furthermore, it broadens an understanding of proceedings of day-to-day activities, including information on leisure activities and norms governing society. Formal education is a systematic process where transition from one level is preceded by another. The significance of these levels is justified by skills gained at preceding stages as tools for advancing to the next level. The article focuses on one of the levels - early childhood development and education (ECDE). This level plays a crucial role in laying a foundation in education. However, the protection of early childhood development and education under both domestic and international human rights law remains uncertain.3

The article focuses on access to early childhood education by children with disabilities in Kenya. The central argument of the article is that, although early childhood education is not strongly protected in the normative international human rights framework, the Basic Education Act of 2013 provides a framework for advancing ECDE for children with disabilities in Kenya. Against this backdrop, the article attempts to answer the following questions: to what extent the Basic Education Act of 2013 provides a framework for safeguarding and promoting access to early childhood education for children with disabilities in Kenya; and what opportunities exist in Kenya’s framework, and specifically in its blue print plan Vision 2030, to make access to early childhood education by children with disabilities a living reality. The structure of the article builds on these questions, and is divided into four sections. Section one begins by operationalising key terms used in the article and providing an overview of the general normative framework on the right to education. Section two introduces the education system in Kenya and legal tools on the right to education for children with disabilities in general. The section closes with an overview of treaty bodies’ comments to Kenya on access to ECDE. Section three narrows down to the Basic Education Act of 2013. An in-depth analysis of relevant provisions on ECDE is conducted. In light of this, the section examines the way in which the relevant provisions of the law may be utilised to seek judicial remedy and to advocate access to ECDE by children with disabilities. The section goes further to examine opportunities for implementation, with a specific focus on one of the flagship projects on education under the Medium Term Plan (2013-2017).4 Section four provides a conclusion and highlights challenges that could be resolved in future research.

2 Operationalisation of terms and overview of the normative framework on the right to education - International and regional

The United Nations (UN) Educational, Scientific and Cultural Organisation (UNESCO) defines early childhood care and education as the period from birth to eight years of age.5 The UN Committee on Rights of the Child (CRC Committee) adopts a similar definition. General Comment 7 on implementing child rights in early childhood6 defines early childhood as ‘all young children at birth throughout infancy, during the preschool years as well as during the transition to school’.7 However, in its reference to ECDE as the term used in Kenya’s policies, the article narrows down to pre-primary education. The Basic Education Act of 2013 (Act) defines pre-primary school as ‘education imparted to a child of four to five years before joining level one in primary school’.8

Additionally, for clarity in understanding, the article draws a distinction between inclusive education, integrated education and special education. The CRC Committee defines inclusive education as ‘a set of values, principles and practices that seeks meaningful, effective, and quality education for all students, that does justice to the diversity of learning conditions and requirements not only of children with disabilities, but for all students’.9 General Comment 4 of the UN Committee on the Rights of Persons with Disabilities (CRPD Committee) on the right to inclusive education adopts a similar definition with additional elements.10 The CRPD Committee recognises partnership, support to teachers and monitoring as essential to inclusive education. The General Comment further defines segregated or special education as ‘provision of education in separate environments designed to respond to a particular or various impairments, in isolation from students without disabilities’.11 Integrated education is defined as ‘a process of placing persons with disabilities in existing mainstream educational institutions, and requiring them to adapt and accommodate to a pre-determined environment’.12 A common practice in integrated education includes isolated units for persons with disabilities in the mainstream school environment who transition after a certain period, depending on how they can cope with the mainstream environment.

2.1 Role of early childhood development and education

ECDE has been described as the foundation for subsequent learning. It is the period of remarkable physical and cognitive development and to ‘children with disabilities it is key in enabling them to be in an inclusive environment’.13 Evidence demonstrates that experiences during the first years of growth enhance or inhibit the realisation of an individual’s potential in future life. The CRC Committee corroborates this argument. It underscores the implementation of children’s rights in early childhood as an effective way to help prevent personal, social and educational difficulties during middle childhood and adolescence.14

At the national level, the national early childhood development policy framework normatively acknowledges the benefits of investing in early childhood education for children with disabilities. The policy recognises that such investment allows early identification and intervention, and therefore ensures that children with disabilities maximise their talents.15 Early assessment coupled with intervention provide relevant information to families and teachers, especially about the support needs of the child that will optimise his or her learning potential.16

Access to quality ECDE by children with disabilities enhances their potential. At pre-school level, children are granted opportunities to learn to co-operate, develop fine motor skills, develop languages and opportunities to take responsibility and make choices.17 Teachers are expected to support children’s sense of self-worth and encourage creativity. Inclusive ECDE for children with disabilities, therefore, will demand a recognition of differences and embrace diversity, hence the need to provide necessary accommodations and modifications to promote inclusion. This includes early training in orientation, mobility skills and alternative communications.

Stimulating early childhood education also enhances placement, retention and academic performance for children with disabilities. Bryant and Maxwell argue that children with disabilities who have been placed in inclusive early intervention groups are less often placed in special education and retained in a grade compared to those who have not.18 The Inclusive Early Childhood Service System Project (IECSS) argues that ECDE is more effective than schools at connecting family support, community development, and child development as integrated and equally important outcomes of inclusive practice.19 Early intervention, therefore, remains a prerequisite to inclusive education for persons with disabilities. The Convention on the Rights of Persons with Disabilities (CRPD) underscores inclusive education,20 as does the Salamanca Statement and the Framework for Action on Special Needs Education (1994).21

Flipping the coin to the economic side, the benefits of early intervention are immeasurable. Heckman argues that early intervention for children with disabilities not only helps to reduce the achievement gaps and the need for special education, but also promotes economic efficiency.22 An analysis of global experience of children with disabilities in schools indicates that key challenges facing inclusive education include a lack of accessibility, stereotyping, un-adapted curriculums and a lack of reasonable accommodation.23

The inclusion of children with disabilities right from the beginning of the education system minimises some of these challenges. Having all children learning together teaches children to value diversity, builds social capital and lays the foundation for inclusive communities.24 With regard to planning and availing necessary tools for education, schools are more likely to avail an inclusive environment at the onset. States, therefore, have to choose between providing adequate interventions in early stages or paying more in the future when phasing out segregated education in line with the standards set by the CRPD.25

2.2 Normative frameworks on the right to education - International and regional

The right to education is safeguarded in different international human rights instruments, namely, the Universal Declaration of Human Rights (Universal Declaration);26 the International Covenant on Economic, Social and Cultural Rights (ICESCR);27 the UN Convention on the Rights of the Child (CRC);28 and the CRPD.29 Regionally, the African Charter on Human and Peoples’ Rights (African Charter),30 the African Charter on the Rights and Welfare of the Child (African Children’s Charter),31 the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Women in Africa (African Women’s Protocol)32 and the African Youth Charter 33 safeguard the rights to education of persons with disabilities.

Specific emphasis on persons with disabilities is laid in articles 11(3) and 13 of the African Children’s Charter. Article 13 of the Children’s Charter obliges state parties to take special measures to ensure that gifted, female and disadvantaged children have equal access to education. This is further elaborated on in the guidelines on implementation of economic, social and cultural rights in the African Charter which calls for inclusive free and compulsory education for children with disabilities.34 More recently, the African Commission on Human and Peoples’ Rights (African Commission) published the Draft Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa (Draft Disability Protocol).35 Article 12 of the Draft Disability Protocol explicitly refers to the rights to education of persons with disabilities, emphasising that persons with disabilities should not be considered uneducable or untrainable.

A running thread in all these instruments is the right to free and compulsory primary education. However, an explicit reference to early childhood education as an early intervention measure is missing, including in the CRPD. The drafters of the CRPD overlooked this particular issue, specifically in article 24, despite proposals during the negotiations to explicitly include early childhood and pre-school education.36 It is to be noted that the CRPD does emphasise early intervention in relation to the right to rehabilitation and the right to health.37The recommendations to state parties by the CRPD Committee also lack explicit guidance regarding early intervention under article 24. Instead, the Committee adopts a more general approach of recommending inclusive education at all levels. In cases where recommendations are targeting specific levels, the CRPD Committee explicitly makes reference to primary, secondary and tertiary education.38 Specific recommendations are only notable in the Concluding Observations of state parties such as Austria, where the CRPD Committee urges the state party to ensure inclusive education from kindergarten to secondary education.39

Nonetheless, recent developments by the CRPD Committee reflect a positive shift. In its General Comment 4 on article 24,40 the Committee underscores early detection, identification and access to services for pre-school children, together with the provision of support and training to parents and caregivers of young children with disabilities.41 The CRPD Committee, thus, encourages state parties to invest in inclusive pre-school education in light of the clear evidence of the benefits to children as well as the enhanced likelihood that attendance at pre-school results in greater acceptance into local community schools.42

At the regional level, the African Commission guidelines to state parties on the implementation of economic, social and cultural rights clearly interpret the right to education to include access to pre-primary education.43 However, the guidelines in subsequent paragraphs fail to elaborate on pre-school.

Contrary to the aforementioned instruments, the Standard Rules on Equalisation of Opportunities for Persons with Disabilities (Standard Rules)44 explicitly make reference to pre-primary education. Rule 6 reminds states to give special attention to very young children with disabilities and pre-school children with disabilities.45 While they remain non-binding, the Standard Rules have arguably become a norm of jus cogens.46 Therefore, Rule 6 read together with article 24 of the CRPD remains key in the promotion of access to early childhood education by learners with disabilities. One can also argue that article 26 of the CRPD on habilitation and rehabilitation to some extent addresses early intervention in school for children with disabilities. It obligates state parties to the CRPD:47

to take appropriate measures to enable persons with disabilities to attain and maintain maximum independence ... and full inclusion and participation in all aspects of life, specifically in the areas of ... education and social services, in such a way that these services and programmes begin at the earliest possible stage and are based on the multidisciplinary assessment of individual needs and strengths.

The Convention on the Elimination of all Forms of Discrimination Against Women (CEDAW)48 also reminds state parties to ensure equality of access by men and women to all levels of education, including pre-primary. Article 10(a) provides:

States shall take measures to ensure ... the same conditions for career and vocational guidance, for access to studies and for the achievement of diplomas in educational establishments of all categories in rural as well as in urban areas; this equality shall be ensured in pre-school, general, technical, professional and higher technical education, as well as in all types of vocational training.

Early intervention is recognised in other declarations, including the Salamanca Statement on Access to Special Education (1994),49 which called on states to invest greater effort in early identification and intervention strategies.50 The Dakar Framework for Action 2000 also recognises the need to expand and improve comprehensive ECDE, especially for the most vulnerable and disadvantaged children.51 Globally, ECDE is becoming an integral strand of discussions on the right to education. In the current 2030 Agenda for sustainable development,52 state parties commit to provide inclusive and equitable quality education at all levels, including early childhood education.53 Hence, while ECDE does not enjoy adequate protection in binding international norms, the correlation between early intervention, inclusive education and being included in the community54 remains unequivocal. The obligation to fulfil this right, therefore, remains inexcusable for state parties.

It is essential to note that Kenya is party to the aforementioned instruments55 and has endorsed international declarations on education, as discussed in this section. These treaties, therefore, form part of the laws of Kenya in line with article 2(6) of the Constitution of Kenya56 and can be used before court when seeking judicial remedy.57

3 Background information on persons with disabilities, the education system and general legislative framework on the right to education in Kenya

According to the World Disability Report 2011, persons with disabilities constitute 15 per cent of the general population.58 In Kenya, statistics indicate that persons with disabilities constitute 4,6 per cent of the general population, which translates to 1,7 million.59

Kenya has an 8-4-4 education system, which translates to eight years for primary school level, four years for secondary school level and four years for higher education.60 Domestically, the rights to education of persons with disabilities are embodied in both mainstream and disability-specific legislation. The Persons with Disabilities Act (PDA) safeguards the right to education and prohibits the denial of admission of a person with a disability to any course of study on the basis of a disability.61 The right to education is also recognised as a constitutional right in article 53(1)(b) of the Constitution of Kenya, which entitles every child to free and compulsory basic education. The Basic Education Act of 2013, which gives effect to article 53(1)(b) of the Constitution, explicitly provides for the rights to education of children with disabilities. An in-depth analysis of the Act is provided in the next section.

While the PDA seems to remain unclear on inclusive education62 and has been critiqued for promoting segregated education, the Constitution, the supreme law in Kenya, provides a framework that may be used to promote inclusive education. It does so, first, by prohibiting indirect or direct discrimination on the basis of disability.63 Second, it provides that persons with disabilities have a right to access educational institutions integrated in the society that are compatible to their interests.64 Third, it recognises the need for substantive equality by providing affirmative measures in education to redress historical disadvantages.65 In summary, the general framework on the rights to education of persons with disabilities in Kenya draws its strength from the robust equality and non-discrimination provisions in the Constitution of Kenya, 2010.

The actual practice, however, has little to be desired. In 2002, Kenya introduced a free primary education policy and later, in 2008, introduced free day-secondary school education.66 One of the gains of the policy is the affirmative action for children with disabilities who get extra allocation to the standard capitation for non-disabled children.67 However, this has not adequately advanced access to inclusive education by the majority of children with disabilities. In its report on access to education by children with disabilities, the Kenya National Commission on Human Rights recommended a review of the free primary education programme to meet the needs of children with disabilities. The National Commission on Human Rights reiterated:68

For these children, Free Primary Education (FPE) goes beyond the provision of desks, books and chalk to include boarding, transportation, health and specialised equipment and teaching-aids necessary to educate them effectively.

Additionally, due to existing stereotypes69 and an overemphasis on literacy and numeracy as a form of testing academic competence70 in mainstream schools, children with disabilities have been forced to go to special boarding schools.71 Statistics indicate that in total Kenya has 1 882 primary and secondary special needs schools.72 The majority of these schools are located far away from the childrens' homes, and parents are forced to pay a boarding fee.73 These extra costs have raised concerns at the treaty level with the CRC Committee, who requested Kenya to provide details of the hidden costs of education of children with disabilities.74

These challenges are further confirmed by statistics provided in Kenya’s state report to the CRPD Committee. According to the state report, only 67 per cent of persons with disabilities were reported to have achieved primary education, while only 19 per cent had secondary education, with most attending special schools at pre-school and primary level. Only 39 per cent attended regular pre-school, and 37 per cent attended regular primary school respectively.75 From these statistics it is clear that most children with disabilities lay their foundation in a segregated environment. In addition, the statistics clearly indicate that, despite affirmative action, children with disabilities are not accessing education equally to their non-disabled peers. Unequal access to services has been interpreted as indirect discrimination.

In Autism Europe v France,76 the European Committee of Social Rights observed:77

Indirect discrimination may arise by failing to take due and positive account of all relevant differences or by failing to take adequate steps to ensure that the rights and collective advantage that are open to all are genuinely accessible by and all.

Subsequently, the Committee held that the fact that the proportion of children with autism being educated in either general or specialist schools was much lower than in the case of other children constituted a violation of article 15(1) of the European Social Charter on taking necessary measures to provide education for children with disabilities. The Committee also held that there was a violation of section 17(1) of the European Social Charter regarding the provision of sufficient and adequate services, whether alone or read in combination with article E on non-discrimination of the revised European Social Charter.

Similarly, the CRPD Committee raised concern over unequal access to services. In its review of the initial state report of Denmark, for example, the Committee raised its concern over unequal access to the complaints system of children with disabilities receiving different hours of support. The CRPD Committee reiterated:78

The Committee is concerned at reports that children in need of more than 9 hours of special education per week may submit a complaint to the Special Education Board, unlike children in need of fewer than 9 hours of special education per week who cannot submit a complaint to an independent authority regarding a lack of adequate educational support.

The CRPD Committee recommended amending the legislation to ensure that all children with disabilities can submit a complaint to an independent authority if they do not receive adequate educational support.79

The central argument of the article paper is that normatively, the principle of equality and non-discrimination, as embodied in both mainstream and disability-specific laws, including in the Basic Education Act, can be utilised to effectively safeguard access to early childhood education. This argument is further analysed in the next section, where the article discusses the extent to which the Act can promote access to ECDE by children with disabilities in Kenya.

3.1 Treaty bodies on access to early childhood education in Kenya

In its interaction with various treaty bodies, both at the regional and international level, Kenya has received various recommendations with regard to its commitment to guarantee access to early childhood education.

In considering Kenya’s initial report, the African Committee of Experts on the Rights and Welfare of the Child (African Children’s Committee) lauded Kenya for constantly increasing its budget allocation for early childhood education.80 Nonetheless, the Children’s Committee expressed concern over the low number of children accessing early childhood education, highlighting that 65 per cent of children aged between three and six years had no access to pre-primary school facilities.

At the international level, an analysis of the CRPD Committee’s Concluding Observations to state parties indicates a lack of explicit and conclusive guidance on access to early childhood education by children with disabilities.81 Conversely, the CRC Committee has expressed its concern on this issue. In its Concluding Observations, the CRC Committee urged Kenya to improve and strengthen early detection and treatment services.82 The CRC Committee further encouraged the inclusion of children with disabilities into the regular educational system and their inclusion in society.83 It urged Kenya to increase the financial allocation given to children with disabilities in schools, taking into account the specific needs of every child.

Specifically on ECDE, the CRC Committee urged Kenya to re-examine the best way of implementing the free primary education policy, due to its effect on enrolment in ECDE.84 The Committee further called for an increased budget allocation, particularly in pre-primary, primary and secondary education.85 In its most recent list of issues, the CRC Committee requested Kenya to provide data on the number of children benefiting from the early childhood development programmes.86 Ultimately, the fact that availability, affordability and accessibility of ECDE services have raised concerns clearly indicates the crucial role played by ECDE towards inclusive education.

The next section examines how the Basic Education Act of 2013 provides a framework of enhancing access to ECDE as an early intervention approach to inclusive education.

4 Basic Education Act of 2013 - A new dawn?

The Basic Education Act of 2013 gives effect to article 53(1)(b) of the Constitution on free and compulsory basic education.87 Critics of the Act have described it as ‘one step forward and two steps back’, especially due to its emphasis on segregated education as opposed to inclusive education.88 However, it is to be noted, specifically with regard to access to education by persons with disabilities, that the Act is the first education statute to explicitly refer to ECDE, including access to ECDE by persons with disabilities.89 Against this background, the next section examines how the Act can facilitate access to pre-primary school by children with disabilities. It does so by examining the following main issues: definitional aspects; equality and non-discrimination as a guiding principle; implementation of the Act; and prohibition of inhumane treatment of children with disabilities in educational settings.

4.1 Definitional aspects

The legal interpretation of terms remains of prime importance in the construction of obligations and entitlements. For instance, in its review of state party reports, the CRPD Committee has consistently called upon states to review their definition of discrimination to include reasonable accommodation and a shift from the medical model definition of disability to the social model.90 The emphasis of a broad definition is to ensure the legal recognition of denial of reasonable accommodation as a form of discrimination on the basis of disability, hence the right to a remedy.

With regard to the interpretation of terms, the Act adopts a broad definition of basic education to include pre-primary education and adult education. It defines basic education as ‘educational programmes offered and imparted to a person in an institution and includes adult basic education and education offered in pre-primary educational institutions and centres’.91 It further defines pre-primary education as ‘education imparted to a child of four or five years before joining level one in primary school’.92 Primary school is defined as ‘education imparted to a child who has completed pre-primary school’.93 Article 53(1)(b) of the Constitution accords to every child the right to free and compulsory basic education.

Two issues arise from the above definitions: first, the question of whether pre-primary school is now free.94 The second question is whether pre-primary education is compulsory as seen in the definitions of basic education. With regard to these two issues (whether pre-primary school is now free and compulsory), the County Early Childhood Education Bill 2014 clarifies that ‘every child has a right to free and compulsory early childhood education’.95 If enacted, the Early Childhood Education Bill, read together with the Act, will provide a framework for furthering access to early childhood education at the county level. Scholars corroborate this argument. To illustrate, in his article Murunga interprets the inclusion of pre-primary education in the definition of basic education as an opportunity to influence the implementation of ECDE at county level.96

In practice, specifically relating to the two issues flagged out, an observation is made in Kenya’s report to the African Commission. Kenya reports:97

The government recognises the significant social and economic payoffs derived from investment in Early Childhood Development and Education (ECDE) including overcoming children educational disadvantages for poor children, supporting parents ... Previously investment in this area has been left mostly to the household, private sector and religious organisations. Since 2012, the processing of capitation grants to support ECDE with a budget of Kshs 1.6 billion to about 19 000 public ECDE centres with 1.4 million children commenced.

Hence, the government is taking concrete steps towards realising free and compulsory education at pre-primary level. Although not conclusively, one can argue that the government’s shift of commitment to ECDE is predicated by an interpretation of basic education as it is provided for in the law.

4.2 Equality and non-discrimination as a guiding principle

The second issue to be examined is the guiding principles. Section 4 of the Act provides for the guiding principles, which are fundamental in interpreting the substantive provisions of the Act. The Act, among other principles, is anchored in free and compulsory basic education for every child, equality and non-discrimination, and equality of education standards, including the medium of instruction to every child in public school. Other principles include the encouragement and protection of the marginalised, persons with disabilities and those with special needs and, finally, the provision of appropriate human resources, funds, equipment, infrastructure and related resources to meet the needs of every child in basic education.98

Incontrovertibly, the principles under section 4 of the Act are centred on equality and non-discrimination. The Act, however, does not explicitly refer to reasonable accommodation. The Basic Education Regulations 2015 resolve this dilemma. It obliges all basic education institutions99 to provide reasonable accommodation100 to children with disabilities.101 These principles are indispensable when assessing the quality of pre-school education for children with disabilities.

From one perspective, it is about the application of the law across the board, regardless of the service provider, as long as services are open to the general public.102 In the case of ECDE for children with disabilities, therefore, it is an evaluation of whether children with disabilities equally access quality services in both public and private schools. A specific element to consider in examining whether children with disabilities equally access quality education services is to assess the provision of reasonable accommodation, which requires immediate realisation.103 The CRC Committee draws the attention of states to potential discrimination in access to quality services for young children, especially where health, education, welfare and other services are not universally available and are provided through a combination of state, private and charitable organisations.104 The provision of ECDE in Kenya is a combination of efforts by the state and the private sector. Research indicates that in the past most ECDE providers have not taken into consideration the needs of children with disabilities.105 Kenya should adopt a holistic approach in the operationalisation of equal access to ECDE by children with disabilities. This should encompass a monitoring mechanism, funding, data disaggregation of the number of children with disabilities accessing ECDE in both the private and public sector and an awareness campaign to combat stereotypes and prejudices.

4.3 Implementation

In accordance with the Fourth Schedule of the Constitution of Kenya, Part III of the Act devolves pre-primary education.106 The County Education Board, together with the county government, is obliged to oversee the operation and management of pre-primary education.107 In addition, the county government is obliged to report annually to the Cabinet secretary on the progress of education.108 Part IV of the Basic Education Act obligates the Cabinet secretary to implement free and compulsory basic education, including establishing pre-primary, primary and secondary schools within a reasonably accessible distance within a county.109 The use of ‘shall‘ in both clauses places a mandatory obligation on government to provide free and compulsory education.110

Part IV further prohibits the charging of tuition fees; the denial of admission to school on different grounds, including disability; places a mandatory responsibility on parents to cause admission to a child; and criminalises the failure to fulfil this duty.111 Part VI on special needs education obligates the Cabinet secretary to establish and maintain public special schools, including pre-primary, primary and secondary schools.112

From these legislative provisions, four main observations may be made in relation to access to pre-primary education, both in special and inclusive environment. The first observation is that the Basic Education Act encourages the community-based service provision approach, which promotes social inclusion.113 This is a very positive step compared to past experiences. Kamundia observes that the lack of accessible schools in the community has forced children with disabilities to opt for boarding schools far away and being separated from their families at a tender age.114

The second observation is that the Basic Education Act safeguards choice; the law prohibits the denial of admission to any school on the basis of disability. The non-rejection clause reinforces the provisions of the CRPD115 to which Kenya is a party. The Office of High Commissioner for Human Rights (OHCHR) observes that non-rejection clauses require immediate realisation and are applicable on an individual basis and should not be subjected to reasonability tests.116 Further, the OHCHR calls for an end to the rejection of students in mainstream schools and urges states instead to provide appropriate support to facilitate their inclusion.117 In its review of Sweden, for instance, the CRPD Committee raised its concern over the refusal of admission to certain pupils with disabilities on the grounds of organisational and economic hardship.118 The Committee urged Sweden to guarantee the inclusion of all children with disabilities in the mainstream education system and to provide the necessary support.119 Similarly, in its recommendation to Kenya, the CRPD Committee urged Kenya to ‘immediately adopt a non-rejection policy for children with disabilities enrolling in regular schools and to provide reasonable accommodation’.120

The third observation is that the Basic Education Act creates a mandatory responsibility on the Cabinet secretary, in consultation with the County government, to establish pre-primary schools. This responsibility is broadly interpreted to include all the resources that ensure the efficient and effective running of a learning institution. It is to be noted, however, that these responsibilities exist in a new system of devolved government which, as alluded to earlier, has the primary responsibility of the implementation of pre-primary education. As a new regime of governance, devolution is under test. While some counties have set up structures and are effectively running, others are still struggling.121 With regard to the implementation of ECDE, the National Education Sector Plan recognises that regional inequalities have negatively impacted on universal access to ECDE with some counties, specifically those from the northern region of Kenya recording the lowest percentage.122 To close existing gaps, the National Education Sector Plan calls on counties to expand the budget allocation for ECDE, and to train parents and teachers on enhancing care and education for younger children.123 To ensure accountability and compliance, the development of a partnership with parents, civil society, in particular representative organisations of persons with disabilities and oversight authorities such as human rights institutions, is an indispensable element.

The CRPD obligates states to involve and consult persons with disabilities and representative organisations in the development and implementation of legislation and policies related to their issues.124 Joint efforts between counties and representative organisations of persons with disabilities will be necessary to support the setting up of inclusive pre-primary schools. The independent monitoring framework, which includes the National Gender and Equality Commission and the Kenya National Commission on Human Rights, should also monitor the extent to which counties are complying with this obligation and identifying areas for harmonisation with universal education standards.125

The fourth observation is that the Basic Education Act creates a mandatory responsibility of parents to ensure the admission of children to schools and criminalises the failure to fulfil this duty. For many children with disabilities, this is a shield - a shield to protect them from prejudices and stereotypes propagated within the family. These stereotypes have been used to justify denying children with disabilities the right to education.126

Teachers recounted instances where they had to literally go to find children locked away by parents who saw no value in educating a child with disability. Many parents viewed such children as unproductive members of society or as ‘victims’ to be hidden.

The Act further puts a monitoring measure as a reinforcement mechanism to the mandatory responsibility of enrolling children with disabilities in school. It obligates the Cabinet secretary and the county Board on education to ensure completion and retention of children in school. It further calls for submissions of an annual report by the county governments to the national government on achievements of each academic year. The monitoring mechanism coupled with the parental responsibility to ensure admission of children with disabilities is a safeguard to keep up-to-date information on the extent to which children with disabilities are accessing education.

4.4 Prohibition of inhumane treatment of children with disabilities in education settings

The final observation is the prohibition and criminalisation of acts of torture, cruel, inhuman or degrading treatment, whether physical or psychological of children with disabilities in education settings.127 Research indicates that children with autism are disproportionally subjected to practices that deprive them of their liberty in schools. This is usually conducted on the account of dangerousness to oneself or others.128 Reports indicate that children with autism are locked in cages or in isolation rooms during episodic moments. Prolonged restraint amounts to torture. This provision, therefore, may be interpreted as a safeguard to protect children with disabilities from being subjected to inhumane practices. It also provides a ground for parents as equal participants in education to question any measure taken against their children, which does not reflect the best interests of the child.

Finally, the Basic Education Act obligates the County Education Board to commission education-related research. This is paramount especially in relation to pre-primary education. Education assessment and resource centres play a critical role of assessing children and placing them in schools. For a very long time, these centres have remained understaffed and underfunded, and there is little information on how to improve their efficiency.129 This includes adopting a multifaceted approach of assessing children’s needs for support to be in an inclusive environment as opposed to the traditional medical model of identification to be placed in a special school. Research, therefore, constitutes one of the elements towards effective and efficient education assessment centres.

5 Opportunities for implementation

In 2008, Kenya adopted a blue print plan130 as a strategy towards the implementation of the Millennium Development Goals (MDGs) under three main pillars: the political pillar, the social pillar and the economic pillar. Education falls under the social pillar. Under the current medium term programme (MTP2), the mainstreaming of ECDE is under the flagship projects for implementation.131 The goals include a review of the ECDE policy framework; the establishment of ECDE resource centres in 47 counties; and the provision of capitation grants with adjustments for children with disabilities enrolled in public ECDE centres.132 Further, the Sustainable Development Goals (SDGs) represent an opportunity for implementation of inclusive ECDE for children with disabilities. The SDG message to leave no one behind seeks to ensure that the targets are met for all peoples and segments of society, including persons with disabilities. Kenya, therefore, will be required to put in place measures to ensure inclusive and equitable early childhood education.

6 Proposals for future research and conclusion

Finally, the article poses two challenges for future research: First, the Act provides that pre-primary education is education provided for children between the ages of four and five years. The standard period of early childhood development and education according to UNESCO is birth to eight years. The question of what happens to children with disabilities before four years poses the challenge of whether the age of four to five is enough for early intervention in relation to the education of children with disabilities. Of specific concern here is birth registration and how this affects subsequent stages of learning, especially because of the primacy of documentation in registering in the education system. This begs the question of what possible ways the government can use to ensure that children between the ages of birth to four are not left out in early interventions as the success of the intervention between ages four and five depends on prior interventions.

Second, how free is free education for children with disabilities at all levels? The Basic Education Act provides that no tuition fee shall be charged to any pupil. Access to education requires a multi-dimensional approach. Availability as a core element of education is a broad aspect more than just affordability and, for learners with disabilities, especially persons with high support needs, this requires taking a step further to the provision of necessary support such as assistive devices, dietary provisions and health checks, especially for children of tender age. The challenge here for pre-primary education, as enshrined in the Act, is how proper dietary provisions and early intervention measures such as rehabilitation will be achieved at school and family level, given the indirect relationship between poverty and persons with disabilities. Should the government enhance social protection programmes to families of children with disabilities?

In conclusion, the article argues that the Basic Education Act does provide a legal pathway of promoting pre-primary school for children with disabilities in Kenya. The Act and the SDGs133 reinforce one another. The Act can offer guidance for the implementation of pre-primary education for children with disabilities, while the SDGs can contribute to the realisation of this right. Moving from paper to practice, therefore, requires adequate funding which should be earmarked at county budgeting, keeping up-to-date statistics which will assist in planning and adopting universal design as a way of dealing with accessibility challenges. The effective development and implementation of ECDE will also require effective participation and the involvement of disabled persons’ organisations and representative organisations of children with disabilities, hence the need for partnership between civil society and parents. Additionally, the monitoring framework under article 33(2) of the CRPD should monitor the extent to which counties are promoting access to ECDE by children with disabilities.

 

1. F Coomans ‘Clarifying the core elements of the right to education’ http://aihr-resourcescenter.org/administrator/upload/documents/core.pdf (accessed 11 November 2016).

2. Arts 24(1)(a), (b) & (c) Convention on the Rights of Persons with Disabilities (CRPD).

3. KD Bieter The protection of the right to education by international law, including a systematic analysis of article 13 of ICESCR (2006) 137.

4. Kenya Vision 2030 2007 http://www.vision2030.go.ke/?page_id=3319 (accessed 23 August 2015).

6. CRC Committee General Comment 7 (2005): Implementing child rights in early childhood, 20 September 2006, CRC/C/GC/7/Rev.1

7. As above.

8. Sec 2 Basic Education Act 2013.

9. CRC Committee General Comment 9 (2006): The rights of children with disabilities, 27 February 2007, CRC/C/GC/9.

10. CRPD Committee General Comment 4 (2016) art 24: Right to inclusive education, 2 September 2016, CRPD/C/GC/4; see also R Riser Implementing inclusive education: A commonwealth guide to implementing article 24 of the UN Convention on the Rights of Persons with Disabilities (2012) 47.

11. CRPD Committee (n 10 above) para 11.

12. As above.

13. UNESCO (n 5 above); Salamanca Statement and Framework for Action on Special Needs Education (1994), para 6; CRC Committee (n 6 above).

14. CRC Committee (n 6 above) para 8.

15. Ministry of Education National early childhood development policy framework (2006) sec 1.4(a).

16. UNESCO Policy Brief on Early Childhood Inclusion of Children with Disabilities: The early childhood imperatives N 46/ April-June 2009/REV; S Philpott ‘Too little, too late? The CRPD as a standard to evaluate South African legislation and policies for early childhood development’ (2014) 2 African Disability Rights Yearbook 51.

17. Ministry of Education Early childhood development service standard guidelines (2006).

18. D Bryant & K Maxwell ‘The effectiveness of early intervention for disadvantaged children’ in M Guralnick (ed) The effectiveness of early intervention (1997) 23-46.

19. Inclusive Early Childhood Service Project ‘Policy Brief No 2: A submission to the Day of General Discussion on the Right to Education for Persons with Disabilities’ March 2015 http://www.ohchr.org/EN/HRBodies/CRPD/Pages/DGDontherighttoedu cationforpersonswithdisabilities.aspx (accessed 27 August 2015) .

20. Art 24(1) CRPD.

21. Sec 2.

22. JJ Heckman ‘The economics of inequality: The value of early childhood education’ (2011) 35 American Educator 31.

23. See Concluding Observations to initial reports of States Parties to the CRPD http://tbinternet.ohchr.org/_layouts/treatybodyexternal/TBSearch.aspx?Lang=en&TreatyID=4&DocTypeID=5 (accessed 27 August 2015).

24. Inclusion International ‘Submission to the Committee on the Rights of Persons with Disabilities: Article 24: Implications of the implementation for the people with intellectual disabilities’ (2015) http://www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPDIndex.aspx (accessed 17 September 2016).

25. CRPD (n 2 above).

26. Art 26 Universal Declaration.

27. Art 13 ICESCR.

28. Art 28 CRC.

29. Art 24 CRPD.

30. Art 17 African Charter.

31. Art 11 African Children’s Charter.

32. Art 12 African Women’s Protocol.

33. Art 13 African Youth Charter.

34. African Commission on Human and Peoples’ Rights ‘Guidelines on implementation of economic, social and cultural rights in the African Charter on Human and Peoples’ Rights’ http://www.achpr.org/files/instruments/economic-social-cultural/achpr_instr _guide_draft_esc_rights_eng.pdf (accessed 5 September 2015).

35. African Commission on Human and Peoples’ Rights Draft Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities, http://www.achpr.org/files/news/2016/04/d216/disability_protocol.pdf (accessed 11 June 2016).

36. UN Enable ‘Chairs Draft Elements of a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ (2004) http://www.un.org/disabilities/default.asp?id=1423 (accessed 11 June 2016).

37. Arts 25(b) & 26 CRPD.

38. CRPD Committee Concluding Observations, Mexico CRPD/C/MEX/CO/1; CRPD Committee Concluding Observations, China CRPD/CHN/CO/1.

39. CRPD Committee Concluding Observations, Austria, CRPD/C/AUT/CO/1 para 40.

40. CRPD Committee (n 2 above) para 67.

41. Para 67.

42. As above.

43. African Commission (n 34 above) para 71.

44. UN General Assembly ‘Standard Rules on the Equalisation of Opportunities for Persons with Disabilities’ 85th Plenary Meeting 20 December 1993, A/RES/48/96.

45. Standard rules (n 44 above) paras 5(a) & (b).

46. Preamble para (f) CRPD.

47. Art 26(1) CRPD.

48. Art 10(a) CEDAW.

49. United Nations Educational, Scientific and Cultural Organisation ‘The Salamanca statement on framework for action on special needs education’ (adopted by the World Conference on Special Needs Education: Access and quality, Salamanca, Spain, 7-10 June 1994).

50. Standard rules (n 44 above) sec 3(6).

51. Dakar Framework for Action: Education for All: Meeting our Collective Commitment (adopted by the World Education Forum, Dakar, Senegal, 26-28 April 2000).

52. UN General Assembly 70/1 Transforming our world: The 2030 Agenda for Sustainable Development (Resolution adopted by the General Assembly on 25 September 2015)A/RES/70/1 https://sustainabledevelopment.un.org/index.php? menu=1300 (accessed 9 February 2016).

53. As above.

54. Arts 19, 24 & 26 CRPD; T Chataika et al ‘Access to education in Africa: Responding to the United Nations Convention on the Rights of Persons with Disabilities’ (2012) 27 Disability and Society 385 398.

55. See list of treaties ratified by Kenya http://tbinternet.ohchr.org/_layouts/TreatyBody External/Countries.aspx?CountryCode=KEN&Lang=EN (accessed 22 August 2015).

56. Art 2(6) of the Constitution of Kenya provides that ‘[a]ny treaty or convention ratified by Kenya shall form part of the law of Kenya under this Constitution’.

57. http://kenyalaw.org/caselaw/ (accessed 22 August 2015).

58. World Health Organization (WHO) & World Bank World report on disability (2011).

59. National Co-ordinating Agency for Population and Development ‘Kenya national survey for persons with disabilities: Preliminary report’ (2008) http://www.afri-can.org/CBR%20Information/KNSPWD%20Prelim%20Report%20-%20Revised.pdf (accessed 22 August 2015).

60. Ministry of Education ‘Education for all: End of decade assessment (2001-2010)’ http://www.unesco.org/new/fileadmin/MULTIMEDIA/FIELD/Nairobi/EFA_EDA_ Report_2012_Web_Version_1_.pdf (accessed 22 August 2015).

61. Secs 18 & 19 Persons with Disabilities Act 4 of 2003.

62. Sec 19 PDA (n 61 above).

63. Art 27(4) Constitution of Kenya.

64. Sec 54(1)(b) PDA.

65. Sec 56(b) PDA.

66. Ministry of Education (n 58 above).

67. Every child is allocated Kshs 1020 (the equivalent of $12), and a child with a disability gets an extra Kshs 2000 ($23) to cater for tuition and other school requirements.

68. Kenya National Commission on Human Rights Objects of pity or individuals with rights: The right to education for children with disabilities’ (2007).

69. Kenya National Commission on Human Rights From norm to practice: A status report on implementation of rights of persons with disabilities (2014).

70. Equal Rights Trust & Kenya Human Rights Commission In the spirit of harambee: Addressing discrimination and inequality in Kenya (2012) 131.

71. CRPD Committee Concluding Observations in relation to the initial report of Kenya 4 September 2015, CRPD/C/KEN/CO/1 http://www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPDIndex.aspx (accessed 17 September 2016).

72. CRPD Committee Consideration of reports submitted by state parties under article 35 of the Convention: Initial reports of state parties due in 2010, Kenya 28 July 2014, CRPD/C/KEN/1 http://www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPD Index.aspx (accessed 17 September 2016); Republic of Kenya ‘Combined 8th-11th periodic report on the African Charter on Human and Peoples’ Rights, November 2014 http://www.achpr.org/search/?c=7&q=kenya (accessed 17 September 2016).

73. Kenya National Commission on Human Rights (n 68 above).

74. CRC Committee List of issues in relation to the combined 3rd to 5th periodic reports of Kenya, 15 July 2015, CRC/C/KEN/Q/3-5; CRC Committee Concluding Observations to Kenya on 3rd, 4th and 5th periodic reports of Kenya, 2 February 2016, CRC/C/KEN/CO/3-5 http://www.ohchr.org/EN/HRBodies/CRC/Pages/CRC Index.aspx (accessed 17 September 2016).

75. CRPD Committee para 176.

76. (1996) ECSR.

77. Complaint 13/2002, Autism Europe v France (n 76 above).

78. CRPD Committee Concluding Observations, Denmark, CRPD/C/DEN/CO/1 para 54.

79. Kenya National Commission on Human Rights (n 68 above) para 55.

80. African Committee of Experts on the Rights and Welfare of the Child ‘Recommendations and observations to the government of Kenya by the African Committee of Experts on the Rights of the Child concerning the initial report on the implementation of the African Charter on the Rights and Welfare of the Child’ SA 2590, art 11, Education.

81. CRPD Committee Concluding Observations to state parties http://tbinternet. ohchr.org/_layouts/treatybodyexternal/TBSearch.aspx?Lang=en&TreatyID=4&Doc TypeID=5 (accessed 5 September 2015).

82. CRC Committee Consideration of reports submitted by state parties under Article 44 of the Convention: Concluding Observations: Kenya, 44th session, 19 June 2007, CRC/C/KEN/CO/2 http://tbinternet.ohchr.org/_layouts/TreatyBodyExternal/Countries. aspx?CountryCode=KEN&Lang=EN (accessed 5 September 2015).

83. As above.

84. As above.

85. As above.

86. As above.

87. Preamble Basic Education Act 2013.

88. W Aseka & AS Kanter ‘The Basic Education Act of 2013: Why it is one step forward and two steps back for children with disabilities in Kenya’ (2014) 2 African Disability Rights Yearbook 50.

89. Kenya National Commission on Human Rights (n 66 above)15.

90. CRPD Committee Concluding Observations to Cook Island CRPD/C/COK/CO/1, paras 5 & 7; CRPD Committee Concluding Observations to Czech Republic CRPD/C/CZE/CO/1 para 7; CRPD Committee Concluding Observations to Ecuador, CRPD/C/CE/CO/1 para 8.

91. Sec 2 Basic Education Act 2013.

92. As above.

93. As above.

94. Ministry of Education ‘Education for All End of Decade Assessment’ (2001-2010) http://www.unesco.org/new/fileadmin/MULTIMEDIA/FIELD/Nairobi/EFA_EDA_Report_2012_Web_Version_1_.pdf (accessed 9 September 2015).

95. County Early Childhood Education Bill 2014 http://kenyalaw.org/kl/fileadmin/pdfdownloads/bills/2014/CountyEarlyChildhoodEducationBill2014.pdf (accessed 17 September 2016).

96. J Murunga ‘Devolving early childhood development education in Kenya: Policy challenges and opportunities’ (2015) 3 International Journal of Education and Research 611.

97. CRC Committee Consideration of reports submitted by state parties under article 44 of the Convention: Combined 3rd, 4th and 5th periodic report of state parties due in 2012, Kenya 30 March 2015, CRC/C/KEN/3-5 http://tbinternet.ohchr.org/_layouts/TreatyBodyExternal/Countries.aspx?CountryCode=KEN&Lang=EN (accessed 9 September 2015).

98. Secs 4(a), (b), (f), (g), (s) & (u) Basic Education Act 2013.

99. The institution of Basic Education and Training is defined to include pre-primary school, primary or secondary school, an adult education institution and a middle-level college.

100. Although the Basic Education Regulations 2015 do not define reasonable accommodation, the CRPD, which forms part of Kenya’s law, in line with art 2(6) defines reasonable accommodation. Kenya has also been urged to define reasonable accommodation in its legislation. Concluding Observations of Kenya, CRPD/C/KEN/CO/1 para 10(b).

101. Basic Education Regulations 2015, sec 25(a).

102. Art 4(1)(e) CRPD.

103. JE Lord & R Brown ‘The role of reasonable accommodation in securing substantive equality for persons with disabilities’ doi: 10.2139/ssrn.1618903 (accessed 12 September 2015); Report of the Office of the United Nations High Commissioner for Human Rights (OHCHR) ‘Thematic study on the rights of persons with disabilities to education’ 18 December 2013, A/HRC/25/29; CRPD Committee Consideration of reports submitted by state parties under article 35 of the Convention on the Rights of Persons with Disabilities, Spain, 19 October 2011, CRPD/C/ESP/CO/1 para 44.

104. CRC Committee para 12.

105. Ministry of Education ‘Task force on the re-alignment of the education sector to the Constitution of Kenya 2010, towards a globally competitive quality education for sustainable development’ Task force report (2012).

106. Ch 11 Constitution of Kenya.

107. Sec 18(a) Basic Education Act 2013.

108. Sec 18(k) Basic Education Act 2013.

109. Secs 28(1) & (2) Basic Education Act 2013.

110. As above.

111. Secs 29, 30 & 34 Basic Education Act 2013.

112. Sec 44 Basic Education Act 2013.

113. Art 19(c) CRPD.

114. E Kamundia ‘Choice, support and inclusion: Implementing article 19 of the CRPD in Kenya’ unpublished LLM dissertation, National University of Galway-Ireland, 2010 88.

115. Art 24(2)(a) CRPD.

116. OHCHR (n 103 above).

117. As above.

118. CRPD Committee Concluding Observation to Sweden CRPD/C/SWE/CO/1, para 47.

119. CRPD Committee Concluding Observation to Sweden (n 118 above) para 48.

120. CRPD Committee Concluding Observation to Kenya, CRPD/C/KEN/CO/ 1 para 44 (b).

121. M Laibuta ‘Implementing devolution in Kenya: Challenges and opportunities two months on’ http://www.constitutionnet.org/news/implementing-devolution-kenya-challenges-and-opportunities-two-months (accessed 11 November 2016).

122. Ministry of Education, Science and Technology ‘National Education Sector Plan, Volume one: Basic Education, programme rationale and approach 2013/2014-2017/2018, para 18 http://www.globalpartnership.org/fr/download/file/fid/45908 (accessed 15 June 2016).

123. Ministry of Education, Science and Technology (n 122 above) para 19.

124. Art 4(3) CRPD.

125. Arts 33(2) & (3) CRPD. See also Draft Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities http://www.achpr.org/news/2016/04/d216/ (accessed 15 June 2016).

126. Kenya National Commission on Human Rights (n 66 above) 37.

127. Sec 36(1) Basic Education Act 2013.

128. E Macdonald ‘Cage for autistic child at Canberra School: A shocking wake-up call’ http://www.watoday.com.au/comment/cage-for-autistic-child-at-canberra-school-a-shocking-wakeup-call-20150909-gjictu.html (accessed 9 September 2015).

129. Kenya National Commission on Human Rights (n 60 above.)

131. Ministry of Devolution and Planning ‘Second medium term plan 2013-2017: Transforming Kenya pathway to devolution, socio-economic development, equity and national unity’ (2013) http://www.usaid.gov/sites/default/files/documents/1860/1%29%20Second%20Medium%20Term%20Plan%202013%20-%202017.pdf (accessed 9 September 2015).

132. As above.

133. See Goal 4 on education.


  • Abdallah Possi
  • Tanzanian Ambassador to the Federal Republic of Germany
  • LLB LLM (Dar es Salaam) DPhil (Erlangen)
  • Ally Possi
  • PGD Legal Practice (Law School of Tanzania); Post-Doctoral Fellow, Faculty of Law, North West University, South Africa; Lecturer, Law School of Tanzania
  • LLB (Mzumbe) LLM (UCT) LLD (Pretoria)

  • A Possi & A Possi ‘The identity question versus appropriateness of legal anti-discrimination measures: Endorsing the disability rights approach to albinism’ (2017) 5 African Disability Rights Yearbook 118-140
    http://doi.org/10.29053/2413-7138/2017/v5n1a7
  • Download article in PDF

Summary

The marginalisation of persons with albinism has for years gone unnoticed. Recently various platforms have been used to combat reported harmful practices against persons with albinism, particularly in Africa. While it is currently accepted that albinism is a human rights agenda, the manner of its advocacy remains unresolved with respect to the ‘appropriate legal approach’ for protecting the rights of persons with albinism. When addressing this problem, two issues appear to be confused: identity (the ‘who are we’ question); and the appropriate legal anti-discrimination approach. Thus, the two issues are distinguished in this contribution by endorsing the ‘appropriate legal anti-discrimination approach’ in realising the rights of persons with albinism. It is worth noting that questions of identity are subjective and should not be confused with objective and empirical questions regarding the appropriate legal mechanisms designed to promote and protect the rights of a particular group. Without downplaying the significance of identity in the formation of the rights groups movement, which has proved vital to the development of human rights, this contribution argues that, while persons with albinism might have multiple identities, the ‘disability rights approach’, which is founded on the social model of disability that uses human rights as a path, is well placed to accommodate matters concerning the rights and equality of persons with albinism.

1 Introduction

Recent human rights discourse has been dominated by debates seeking to adopt preferable solutions for realising the rights of persons with albinism. Indeed, albinism is now widely acknowledged to be a human rights concern. However, the latest approaches deployed to address this concern conflict with one another and, at times, overlap. The question of identity has emerged, as has uncertainty over the best approach to adopt in attempting to realise the rights of persons with albinism.

Before unpacking the main issues in this area of concern, a general understanding of albinism is important. It is a rare, non-contagious, genetically-inherited condition present at birth. It is found in both genders, regardless of ethnicity, and in all countries of the world. The condition results in a lack of pigmentation (melanin) in the hair, skin and eyes, causing vulnerability to the sun and bright light. As a result, most persons with albinism have varying levels of visual impairments (some may be legally blind) and are prone to developing skin cancer.1 The medical approach to albinism is insufficient as it treats the condition as an illness or defect2 - a ‘disease involving lack of pigmentation’.3

The prevalence of albinism varies across the world.4 It is estimated that one in every 20 000 persons in North America and Europe has some form of albinism, while the reported frequency in sub-Saharan Africa ranges from one in 5 000 to one in 15 000, with prevalence rates of one in 1 000 to one in 1 500 for selected populations.5 However, studies on the frequency of albinism often lack objectivity in their methodology or are incomplete, rendering the estimates guesses at best. According to World Health Organisation (WHO) estimates, there are tens of thousands of people living with albinism in Africa. 6

Negative social perceptions are a major obstacle to the enjoyment of the right to equality and other human rights of persons with albinism.7 The literature reveals a long history of widespread acts of stigma against persons with albinism in different places throughout the world,8 where they are viewed as inferior, bizarre and sinister,9 and often subjected to ridicule.10 There were even times when African Americans with albinism or those with vitiligo were exhibited in taverns, dime museums and circus sideshows.11 The portrayal of albinism in some films and fiction has been viewed by activists to be mostly negative, and this supports and stimulates societal intolerance and discrimination against the group.12 In some places, because of a lack of understanding about albinism, it is taken for granted that persons with albinism have perfect vision and, therefore, should not require assistance.13

The visibility of persons with albinism differs according to geographical location. In Western societies, where the populations are predominantly pale-skinned, persons with albinism often pass unnoticed, while in sub-Saharan Africa the condition is usually visible.14

In addition to the practical problems associated with albinism generally in Africa, an enduring challenge encountered by persons with albinism is the stigmatisation and ostracism they face.15 Such treatment is often associated with a web of myths pertaining to the condition, which myths usually have negative connotations.16 At the centre of all challenges confronting persons with albinism, women and children with albinism have always been most vulnerable in this regard. Children with albinism are at risk of abandonment, discrimination and exclusion17 because of the existence of harmful traditional practices of infanticide against them, as is commonly reported in some African communities.18 General problems of marginalisation in education and employment also affect persons with albinism.19 Their lack of education results in high unemployment rates which ultimately give rise to them experiencing the additional problems associated with low income and poverty. As a result, many persons with albinism in Africa cannot afford the cost of what they particularly need, such as proper sun screen lotions,20 and, therefore, are at greater risk of developing skin cancer. The level of discrimination and the prevalence of myths have gone as far as ‘promoting’ the ritual killing of persons with albinism and the trade in their organs, the trafficking of their persons and the sale of children with albinism, often motivated by the myth that the ‘body parts of persons with albinism possess magical powers capable of bringing riches and power’.21

As stated above, while it is not in doubt that albinism currently is a human rights concern, the question of the ‘appropriate legal approach’ for realising the rights of persons with albinism appears not to have been conclusively answered. Thus, this contribution investigates the appropriate human rights approach for safeguarding the rights of persons with albinism and endorses the view that the disability rights approach appropriately accommodates matters concerning the rights and equality of persons with albinism.

This contribution contains six sections. The first is a general introductory section, which is followed by an assessment of the current international and regional approaches to protecting the rights of persons with albinism. The third section reveals some concerns surrounding the grounds of discrimination which have a bearing on advancing the rights of persons with this condition. The disability approach to albinism, which forms the central concern of this work, is analysed in section four. The approach endorsed still faces some challenges, which the article identifies in section five. Lastly, section six contains concluding remarks.

2 International and regional approaches to albinism

The second half of 2013 witnessed several landmark developments in advancing the rights of persons with albinism. International and regional human rights institutions took centre stage in this process. At the United Nations (UN), the Resolution on Attacks and Discrimination against

Persons with Albinism22 was adopted by the Human Rights Council in June 2013. Later, in September 2013, the Office of the UN Human Rights Commissioner issued the Preliminary Report on Persons with Albinism.23 Fourteen days after the publication of this report, the Human Rights Council adopted a Resolution on Technical Co-operation for the Prevention of Attacks Against Persons with Albinism.24 Recent achievements at the UN were the proclamation of 13 June as the International Albinism Awareness Day;25 the issuing of the Human Rights Council’s Advisory Committee Report on a Study on the Situation of Human Rights of Persons with Albinism;26 and the appointment of the Independent Expert on the Enjoyment of Human Rights by Persons with Albinism,27 who issued her first report on 18 January 2016.28

Amongst the steps taken by the African Union (AU) through the intervention of African human rights institutions were the adoption of the Resolution on the Prevention of Attacks and Discrimination against Persons with Albinism,29 and a Declaration on Ending Discrimination and Violence against Girls in Africa.30 There has also been an investigative mission with respect to the situation of children with albinism. 31

While the Human Rights Council Resolution on Attacks and Discrimination against Persons with Albinism32 does not mention disability, the African Commission Resolution on the Prevention of Attacks and Discrimination against Persons with Albinism, which in many respects is similar to the UN Albinism Resolution, directly adopts a disability approach to albinism. Not only does the Albinism Resolution of the African Commission on Human and Peoples’ Rights (African Commission) refer to article 18(4) of the African Charter on Human and Peoples’ Rights (African Charter), which provides for the rights of persons with disabilities to special measures of protection in keeping with their physical or moral needs, but article 7 of the Albinism Resolution also invites its Working Group on Older Persons and People with Disabilities to include guarantees of the rights of persons with albinism in the envisaged Draft Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa (African Disability Protocol). However, the Declaration on Ending Discrimination and Violence against Girls in Africa appears to treat albinism and disability as distinct issues, for example, when it requires member states to

take urgent and appropriate measures to support and provide for the needs of girls, particularly those in vulnerable circumstances, such as girls with disabilities, girls with albinism, girls in disasters ...

This kind of distinction (girls with disabilities and girls with albinism) appears four times in the declaration, which suggests that it was not accidental.

The latest international and regional developments set the stage for the adoption of the right approach to realising the rights of persons with albinism, while also raising relevant questions for consideration with respect to the appropriate approach. In fact, there are similarities between persons with albinism and those belonging to groups internationally accepted as minorities, or other groups that have suffered from marginalisation on whatever grounds. Nevertheless, it is necessary to study the situation and come up with a precise understanding of the phenomenon, since overgeneralisation runs the risk of obfuscating particular aspects of the condition that ought to be considered if real equality is to be realised. This makes it necessary to debate the appropriateness or otherwise of the disability approach to albinism. However, it is necessary first to determine how to categorise albinism as a cause of discrimination, which is done in the next section.

3 Albinism and the problem of categorising the basis of discrimination

While it is clear that persons with albinism experience marginalisation and discrimination, there seem to be some difficulties or contradictions in identifying the category into which they fall on the basis of discrimination. It appears that there are conflicting opinions as to how discrimination against persons with albinism should be dealt with, namely, whether the orthodox civil rights approach, based on colour (independently from the grounds of race and ethnic origin)33 should be adopted, or the disability rights approach.34 A closer examination of the arguments for these approaches follows.

The Preliminary Report of the Office of the UN High Commissioner for Human Rights on the Attacks and Discrimination against Persons with Albinism called for further analysis and consultations to determine the category into which persons with albinism may fall and the basis for discrimination against these persons.35 On the question of whether persons with albinism should be categorised as persons with disabilities, the Report noted: 36

In some of the written submissions received from associations working with persons with albinism, they are considered persons with disabilities. Others refer to discrimination on the ground of skin colour.37

According to the Convention on the Rights of Persons with Disabilities (CRPD), persons with albinism could be considered persons with disabilities. According to information received, the laws of some states recognise albinism and the associated visual impairment as a disability. An additional review of the national legislation on disability needs to be conducted, and consultations with persons with albinism are required on the issue of self-identification. 38

The report also considered other grounds of discrimination that could be used to protect persons with albinism, such as race, minority status or ‘other status’, and stated:

The Committee on the Elimination of Racial Discrimination has not yet examined the issue of discrimination on the basis of colour with respect to persons with albinism.39

The Independent Expert on minority issues has stated that ‘[p]eople living with albinism do not fall under the internationally accepted definition of minorities ... However, their stigma, the lifelong social exclusion and general discrimination they face is a similar experience to those vulnerable racial minorities because of their different skin colour.’40

Organisations working with persons with albinism advocate for considering them as a group requiring special attention, as the discrimination and attacks they are exposed to are mainly rooted in erroneous beliefs and myths that must be addressed. 41

The Human Rights Council’s Advisory Committee Report on a Study on the Situation of Human Rights of Persons with Albinism states inter alia:42

Human rights challenges associated with albinism are multi-layered and are not currently being addressed in a comprehensive and sustainable manner by any human rights mechanism. In addition to the fact that they do not fall within the scope of the current definition of minorities, persons with albinism often suffer from poor eyesight and are prone to developing skin cancer, but cannot or would not want to be classified as persons with disabilities, as that would mean adding another layer of labelling and discrimination to which they may be subjected.

The Independent Expert’s first report on albinism connects disability only with the visual impairment effects of albinism.43 This is also the opinion of some in Europe and North America.44 There is also the view that the problems with vision associated with albinism may not on their own be sufficient to constitute an impairment which substantially limits a major life activity.45 Therefore, the ‘perceived disability’ approach has been proposed, which puts the focus on (another’s) perception of the individual as ‘disabled’ without requiring the individual to view himself or herself as ‘disabled’.46

In an effort to determine the ‘appropriate legal approach’ to realising the rights of persons with albinism, conflicting views often emerge in relation to the question of identity as a construction of ‘self’ and the question of the appropriate legal anti-discrimination approach. This could be complicated by any attempt to ‘universalise’ albinism, thereby overlooking some issues, such as the evolving concept of disability. Much as issues of albinism cannot be ‘universalised’, the thesis of this contribution is that questions of identity are subjective and should not be weighed against objective and empirical questions regarding the appropriate legal mechanisms designed to promote and protect the rights of particular groups. This requires a closer look at identity, its formation and rejection, on the one hand, and the nature and purpose of legal terms, on the other.

The understanding of one’s ‘self’ is a step forward in the development of group identity, which has been used as a political tool for marginalised groups47 such as persons with albinism. Every human being is aware of his or her individuality, and this awareness enables us to reflect on who we are, whom we choose to identify with, and what we choose to do as matters of choice, not compulsion.48 Identity is empowering when self-ascribed, but can be delimiting when identity is ascribed to one by others.49 Identity is a subjective experience and ‘fluid’, being subjected to the fluctuations of self and society;50 and time, space and relationality are all important in identity formation and the achievement of a self-concept.51

People may accept or reject identities merely because of a variety of perceptions in their societies. For example, when disability identity is perceived as inferior, some persons with disabilities may try to conceal social markers of impairment to avoid the stigma of disability,52 and may feel the need to overcompensate for their impairments; that is, the need to succeed at levels higher than their colleagues without disabilities, which may lead to their developing a stressful lifestyle.53 Others may try to shift the focus of their impairment through denial. This is what has been referred to as ‘disability passing’.54 In other words, the disability label may have offered some persons an opportunity to limit the freedom and independence of others, and a significant number of persons with disabilities may resolve to make everyone think that they do not have a disability,55 or even develop negative attitudes towards others with disabilities in an effort to pass as ‘normal’.56 In the circumstances, certain persons with albinism may reject a particular identity such as a disability identity. This is not because they do not have an impairment, but because of the effects linked to societal perceptions that ‘disability is a bad thing’.57 Therefore, stigmatisation may have the result that some persons with albinism may internalise the harmful reactions that are generated by ignorance, cultural beliefs and myths, hence prompting a loss of self-esteem, which may possibly make them conclude that they have little to be proud of, either as persons with disabilities, in general, or as persons with albinism, in particular.58 On the other hand, the shift from medical to social approaches to disability has situated disability as a ‘valued concept’ in identity formation and, in this way, the adoption of a disability identity is seen as the ‘reclaiming of the body’ from approaches that have diminished the value of persons with disabilities.59

When a particular concept is used in a legal sense, its meaning is not always subjected to an individual being’s perceptions or desires. Any legal term in a statute serves a particular purpose in that statute. The concept of disability, for example, is capable of being construed in either the context of identity as above, or in the legal sense. Used in a legal context, it has a ‘gate-keeping function’ since it denotes the class of people entitled to special benefits, or those who qualify for reasonable accommodation and protection against discrimination.60 To achieve this purpose, disability has to be objectively interpreted, as against disability as a subjective, individual (self)-construction. When it is construed with respect to the perception of self, disability may not necessarily produce the same results as when the term is used in a purely legal sense. It is also a fact that certain conditions may have ‘multiple’ identities and could well fit in with specific legal concepts defining particular groups. Where the same meaning is produced in both the subjective and objective construction of a particular concept, this should be more of a coincidence than a matter of pure logic.

This rejection of over-emphasising the construction of self in determining the basis of discrimination should not be construed as ignoring the significance of identity in the formation of a rights group movement and, for the purposes of this contribution, the ‘albinism movement’. It is not in doubt that the recognition of one group in society by others comes about only with self-awareness within that group of its differences and strengths.61 The main point here is that identity issues and prohibited grounds of discrimination are not necessarily the same thing.

The perceived difficulty of defining the type of discrimination that occurs against persons with albinism, or the conflation of the question of identity as a construction of ‘self’ with the question of an appropriate approach to legal anti-discrimination measures, may well have arisen as a result of overlooking the potential of the disability approach to albinism, which is explored in the following section.

4 Disability approach to albinism

When contemplating the disability approach to albinism, one cannot ignore the complex relationship and, at times, the overlap, between the disability identity and the legal, human rights concept of disability. Furthermore, as there cannot be a universal legal definition of disability, it is inappropriate to narrow the definition and exclude any possibility of having some flexibility in interpreting the term. We expound the disability approach to albinism first by stating the extent to which disability as a matter of identity differs from disability in the legal context, and proceed to emphasise the broad concept of disability, considering the possibility of catering for albinism in domestic disability legislation. The disability approach to albinism is preferred, as this approach is better able to address the concerns of persons with albinism in Africa.

4.1 Coincidence of construction of self and a legal concept

As already stated, disability may be perceived as a matter of self-construct or as a legal construct, and an understanding of the difference between the two is vital to the general understanding of albinism as a disability, not only because of the concomitant visual impairment, but also because of the lack of pigmentation. However, there is a thin margin separating developments in disability identity and the current human rights approach to disability to be found in legal texts.

Disability as a matter of identity pervades the history of disability activism and scholarship.62 Persons with disabilities have the capability of constructing a self-identity not constituted in impairment but rather independent of it, and of accepting impairment as a reality that they live with without losing a sense of self.63 The people in this group share a common history and experience of ‘oppression’ and a common bond of resilience,64 the commonalities of which have produced a common way of expressing their shared experiences of negotiating disability in a world oriented largely for (and by) able-bodied people.65 Disability identity, thus, is a political tool; and the legitimising language of the ‘politicised’ disability identity serves as a communicative tool that asserts that a marginalised disability group has equal rights in the larger society.66

Disability identity has significantly influenced the approach of the CRPD67 and disability legislation that rejects the medical approach to disability. The past legal definitions of disability were influenced by the medical or welfare approach to disability, in which the term ‘disability’ was used interchangeably with the term ‘impairment’ - a biological condition - or some functional characteristics, without reference to externalities such as stigma or the inaccessibility of the environment.

4.2 No universal definition of disability

The CRPD does not expressly define ‘disability’, but recognises it as ‘an evolving concept’, and states that ‘disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others’.68 The reason for withdrawing the definition of disability was the disagreement in the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities with regard to whether or not the CRPD should include a definition of disability.69 While, on the one hand, there was a concern that not including a specific definition of disability in the CRPD could lead to excluding persons with certain impairments,70 on the other, an argument was raised that any disability would inevitably derive from the medical model, which would also lead to the involvement of some people and the exclusion of others.71 The view which seems to accord with the current approach is that the definition may change to make room for the inclusion of people who may not now be considered persons with disabilities72 and, furthermore, that any definition would also risk ignoring variations amongst societies - by ‘imposing a Western view of disability on non-Western cultural systems’,73 or by compelling states to accept the existence in their societies of a large number of impairment groups not traditionally understood as persons with disabilities.74 By not specifically defining disability, the CRPD enabled states and regions to contextualise disability issues within their realities.75

Since the CRPD recognises attitudinal and environmental barriers as hindering the full and effective participation in society of persons with disabilities, it is evident that such barriers cannot be the same throughout the world, a fact which should make it understandable that some people with certain forms of impairment may not be perceived as persons with disabilities in certain areas. Persons with albinism belong to one such category. A cross-cultural work in anthropology and disability studies has also highlighted the fact that the Western definition of disability does not necessarily clearly correspond to the way in which people define disability in other parts of the world.76 This could explain not only the differences in the general perceptions across continents, but also the differences in the policy and legislative approaches regarding whether certain conditions, such as a lack of skin pigmentation, are sufficient to constitute an impairment necessary for the definition of disability in a particular jurisdiction.

In 2014, when responding to a questionnaire distributed by the Human Rights Council Advisory Committee, and particularly regarding the question of whether albinism is regarded as a disability, there were some notable differences in approaches or perceptions across countries, which could be attributed to a variety of factors in different countries. Responses from the human rights commissions of Malawi, Rwanda and South Africa77 made it clear that persons with albinism are considered persons with disabilities in those countries. In countries such as Denmark, Spain, France and Germany, albinism was ‘qualified’ as a disability only with respect to visual impairment.78 A similar view was expressed in China and Australia,79 although there was also the view that there could be various categories for persons with albinism relating to non-discrimination laws on the basis of sensory impairment and physical appearance.80

The responses to the questionnaire reinforce the view that perceptions of difference or the visibility of ‘disability’ attached to the skin are more frequent in places where albinism appears more visible, as in sub-Saharan Africa. In Nigeria, for instance, according to one non-governmental organisation (NGO), persons with albinism are considered ‘the unfortunate lot who are ill-coloured’.81 An NGO in Germany presented a different picture.82

Due to the fact that Germans are Caucasians, PWA often are not recognised [as persons with disabilities] by fellow citizens. This is due to two facts: lack of knowledge on albinism in the general population and the fact that their complexion (which may vary from white to strawberry-blonde to light brown) does not differ too much from that of the other citizens.

There is growing recognition and acceptance in Africa that persons with albinism are persons with disabilities.83 In a disabling society, so described because of the non-inclusion of persons with albinism, defining a certain person as a person with a disability constitutes a way for persons with albinism to explain to other individuals why they cannot do certain things which people without disabilities can do.84 Their rights are violated on the basis of their disability status.85 In addition to the negative social perceptions, the inaccessibility of basic requirements for persons with albinism, such as sunscreen lotions, proper skincare, large print information or magnifying glasses, has seriously contributed to the marginalisation of persons with albinism in sub-Saharan African countries. A tropical climate and the predominance of an agricultural economy means that the choices of employment opportunities of persons with albinism are limited, considering the susceptibility to skin cancer which may result from long-time exposure to sunlight. Under the circumstances, sunscreen and visual aids should be treated in the same way as wheelchairs and crutches for people with physical disabilities.86

4.3 Albinism in domestic disability legislation

Generally, a human rights approach in disability legislation would mean that persons with albinism, especially in the African community, qualify for the protection and benefit of disability legislation. It would be difficult to sufficiently accommodate the issues of interest to persons with albinism in disability legislation where the definition of disability, for example, is focused on substantial limitations in obtaining employment or obtaining work,87 which would mean that only certain persons with albinism qualified for the benefits of that legislation.

Many countries in Africa have ratified the CRPD. This has resulted in the enactment of new disability laws in some countries, which progress is expected to be emulated by other countries. In Tanzania, for example, the Persons with Disabilities Act88 defines disability in relation to an individual to mean a loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical, mental or social factors. The Act also adopts a definition of a person with a disability like that of the CRPD, recognising a person with a disability to be ‘a person with a physical, intellectual, sensory or mental impairment and whose functional capacity is limited by encountering attitudinal, environmental and institutional barriers’.89 Also, the Zanzibar Persons with Disabilities (Rights and Privileges) Act90 shifts from the medical approach to disability and, in addition, groups ultraviolet sun glasses and sun creams together with ‘assistive devices and appliances’.91 Namibia, Zambia and Zimbabwe are also amongst the states with a non-medical definition of disability or a person with a disability,92 reflecting the CRPD’s context, according to which a person with albinism should qualify as a person with a disability. Although there could be question as to the legal definition of a person with a disability under South African statutes, a recent study on the ‘knowledge of disability rights and the social encounters of students with disabilities in tertiary institutions’ included persons with albinism as participants.93 In 2010 there was a move to include ‘albinism’ in the legal definition of disability in Kenya,94 although this move should be looked at in the context of the problem of defining disability in Kenya since, should a broader human rights definition of disability be adopted, it is not necessary to specifically list all kinds of impairments for the purpose of establishing that one’s condition fits into any of the categories listed in the definition.95

4.4 Weighing other non-discrimination approaches

Being marginalised and discriminated against is a common experience of persons with albinism in Africa, which they share with other marginalised groups. It is indeed possible, either because of the construction of the self, or the substantive nature of the anti-discrimination laws of certain jurisdictions, that persons with albinism could fall under different groups. It is for this reason that the discussion on albinism has involved other issues - notably issues of colour, of being in a minority, and of belonging to a particular social group. None of these issues can sufficiently address albinism issues in Africa, in terms of both visual impairment and a lack of skin pigmentation, in the manner the disability approach does.

4.4.1 Colour

There is no definition of ‘colour’ in human rights instruments. However, it is generally recognised that ‘colour’ implies skin colour. 96 Twenty-seven African constitutions identify ‘colour’ and ‘race’ as distinct prohibited grounds of discrimination,97 whereas 25 African constitutions do not list ‘colour’ as a prohibited ground of discrimination.98 Morocco and the Seychelles have adopted the ‘classical’ juridical equality stipulations by protecting the right of all to equality, but without mentioning any prohibited ground of discrimination.99 The Tanzanian Constitution identifies ‘colour’ as a prohibited ground of discrimination, but does not include ‘race’ or ‘ethnic origin’ in the list,100 suggesting that the term ‘colour’ could also be extended to cover race. However, using race as a proxy for colour poses some concerns of its own, since the two are in fact distinct phenomena,101 although they sometime overlap.102 This situation raises the following questions: Did the drafters of those constitutions that mention ‘colour’ as a prohibited ground of discrimination have persons with albinism in mind? Can the word ‘colour’, given the current situation, be extended to address albinism? Are persons with albinism in Africa stigmatised merely because of their colour?

Some have championed for ‘colour/colourism’ to be recognised as a distinct form of discrimination, which should cover persons with albinism, where the equality clause prohibits discrimination on the ground of colour independently from the grounds of race and ethnic origin.103 As already stated, although the term ‘colour’ in human rights anti-discrimination discourse refers to skin colour,104 it cannot be stated with certainty that the drafters had albinism in mind, and perhaps the insertion of colour as a prohibited ground of discrimination was an easy way of navigating through the complications associated with race/colour definitions. In explaining discrimination against persons with albinism, ‘skin colour matters’.105 However, colour per se is not the cause of stigma directed at persons with albinism in Africa. Persons with albinism also face discrimination because of the impairments associated with the condition of albinism, such as photophobia; decreased visual acuity; extreme sun sensitivity; and skin cancer.106 Therefore, colour alone, as a prohibited ground of discrimination, does not address the actual impairment consequences affecting the skin of persons with albinism. If colour were the main cause of stigma, the stigma directed at persons with albinism in Africa could also have extended to other ‘white’ persons, namely, persons of European origin in Africa.

4.4.2 Minority

Persons with albinism do not fall under the internationally-accepted definition of minorities, which is limited to national, ethnic, religious or linguistic minorities.107 However, social attitudes toward persons with albinism are often similar to those experienced by other disability and minority groups.108 It is for this reason that persons with albinism may be regarded as belonging to the ‘minority’ group - when the term is used in its generic form.109 Used in its generic form, the term ‘minority’ then becomes too broad, and capable of including almost all marginalised groups. For example, viewed as a social construct, disability is a culturally-constructed minority identity,110 and persons with disabilities have been defined as the ‘largest minority’ in the world.111

While the minority approach to albinism may be similar to the ‘disability rights approach’, in the sense that both approaches reject the medical conception of albinism/disability, the minority approach risks ignoring the specific ‘disability-related rights’ with respect to persons with albinism. At this point it is perhaps important to take note of the argument that achieving equality for persons with disabilities is a more complex and difficult process than achieving equality for minorities.112 In the circumstances, the impairment aspect of albinism makes it preferable to deal with it from a disability rights perspective. It may also be argued that the term ‘minority’ carries with it the same problems as the phrase ‘a particular social group’ (discussed immediately below), since it is so broad, and cannot in itself exclude persons with albinism from the ‘disability’ or ‘other status’ categories.

4.4.3 A ‘particular social group’ or ‘other status’

Several African constitutions have the phrase ‘other status’ as a prohibited ground of discrimination. The term ‘other status’ envisages prohibited grounds of discrimination which are not clearly listed or addressed in the current international or regional instruments or domestic anti-discrimination laws. However, the phrase seems to be more a speculative than a practical tool, given the fact that most of the concrete policy or legislative measures aimed at addressing discrimination are focused on particular groups mentioned in the relevant laws.

Some could have attempted to classify persons with albinism as belonging to a particular social group.113 However, this expression is itself too broad to be useful, although it could be adequate to cover persons with disabilities114 or persons with albinism, where these groups of persons (or either of them) are not expressly covered in a particular legal or policy instrument.

Therefore, it follows that the expressions ‘a particular social group’ and ‘other status’ are unnecessarily expansive, and do not necessarily preclude persons with albinism from the protection of disability legislation. Relying solely on this approach may also lead to difficulties in ascertaining specific measures aimed at addressing the impairment aspects of albinism.

4.4.4 Albinism and the question of intersectionality

Intersectionality connotes that different identity categories can intersect and co-exist in the same individual in a way that creates a qualitatively different experience when compared with the experience of any of the characteristics separately.115 In this sense, intersectionality denies that identity can be dissected into ‘mutually exclusive categories of experience and analysis’.116 Therefore, the grounds for discrimination should (in the appropriate circumstances) be defined in such a way that they reinforce one another.117 Therefore, a truly intersectional approach, for example, would state that the level of discrimination that a woman with albinism experiences is different from that faced by other women and distinct from that suffered by other persons with albinism. This is like stating that, because the CRPD covers albinism, the discrimination a woman with a disability experiences is different from that faced by other women and different from that suffered by other persons with disabilities. This article does not reject the notion of the intersectional nature of discrimination. Even within the larger disability group, it may be argued that only recently have there been louder voices for persons with albinism, meaning that the significance of intersectionality as regards albinism is that it exposes the differences in categories, including the disability category, bringing to attention the individuals at the intersections who are ignored by the current orthodoxy. 118

The intersectional nature of discrimination is neither peculiar to persons with albinism, nor peculiar to persons belonging to any other ‘identities’. The core question in this article has been whether or not disability covers albinism, which we answer in the affirmative. Furthermore, the synergistic nature of intersectional discrimination requires one to identify some grounds of discrimination which, taken separately, would not seem to be discriminatory,119 and what these are with respect to albinism. Are persons with albinism discriminated against because of both colour and impairment? Which impairment - visual or a lack of skin pigmentation? Is it merely a question of colour or is the impact attached to the lack of skin pigmentation? These questions would take one back to the issues already covered in this article: visual issues which would require assistive devices, or an inability to work for long hours in the sun, which may require that workers with albinism be given reasonable office accommodation. Coupled with discrimination against the individual concerned, these factors are sufficient to constitute disability.

Intersectionality plays an important role in defining some unique instances of discrimination, but its overgeneralisation may lead to the incorrect assumption that intersectional discrimination is the only form of discrimination, or the only f orm of discrimination worthy of being addressed. This kind of assumption would create new and harmful stereotypes, such as that all persons with albinism are victims of intersectional subordination.120

4.5 Multiple identities and intersectionality not excluding the disability approach

Persons with albinism may have multiple identities, and there could be a number of suggestions regarding measures aimed at improving their human rights situation. Nevertheless, despite the multiple identity nature of albinism, the stigma surrounding albinism is not based purely on colour, and other seemingly broader descriptions or approaches to albinism, such as those attached to ‘minorities’ or ‘particular social groups’, sound as they may appear to be, may not be able to answer some specific issues of concern for persons with albinism in Africa. Therefore, it is important to recognise the fact that the impairment-related issues linked to albinism are fully covered under the CRPD and can be fully addressed under any domestic legislation following the CRPD model.

5 Potential challenges to the disability approach to albinism

The broad human rights approach to disability properly addresses albinism issues, especially in Africa, with respect to both visual impairment and skin pigmentation. However, there are still those who do not appear to fully appreciate the disability rights approach to albinism. This may be the case for a number of reasons, such as the continued existence of the vestiges of the medical approach to disability, weaknesses within the African albinism movement, and faulty attempts at universalising albinism, amongst others.

There are numerous policies and pieces of legislation in various countries that maintain the medical approach to disability, making it tedious to progressively address the concerns of albinism. For example, Uganda’s definition of disability is tied to ‘a substantial functional limitation of daily life activities’.121 Although there are some references to environmental barriers, the legislation contains the ‘disability coding’ which not only reflects the medical approach to disability but also excludes persons with albinism.122 Some other examples of the medical approach to disability or the medical definition thereof can be seen in the disability legislation of Rwanda123 and Sierra Leone.124 In South Africa, although the Constitution as a whole is widely deemed (amongst some scholars) to be admirable, some uncertainties remain in defining persons with disabilities. Different pieces of legislation define disability for different purposes, such as employment and social security.125 None of these definitions incorporates persons with albinism. In Ghana, the Persons with Disability Act126 defines neither disability nor a person with a disability, making it problematic not only for persons with albinism who may seek to benefit from the said legislation, but also for other persons who may fall within the disability group. We take note, though, that the fact that the respective countries have ratified the CRPD is itself a progressive step towards a more inclusive approach to disability.

The medical approach to disability is likely to lead to persons with albinism being categorised as being ‘impaired’, which leads to stigmatisation and disempowerment. The construction of diametrically-opposed identities, the good against the bad, the strong against the weak, or the desirable against the undesirable, is fundamental to the oppression of persons with disabilities.127 When this is the perception of disability amongst individuals with albinism, it is not possible to easily support the disability approach to albinism, since they too would perceive disability as a ‘bad thing’. In other words, the rejection of the disability approach to albinism by some persons with albinism could well be caused by the fact that they too, perhaps unknowingly, also stigmatise persons with other forms of impairment.

The rejection of the disability approach to albinism by some individuals with albinism may influence them to look for a different way of characterising the nature or cause of discrimination against persons with albinism. When this happens in an environment where the African albinism movement lacks the ability to venture separately into the international arena, there is a risk of falling into the old trap of treating some conditions as universal from the perspective of Western rights movements. This observation should not be regarded as intended to discredit the tremendous efforts being made by some Western albinism rights activists who have worked tirelessly to promote the albinism agenda in the international human rights fraternity.128 The point is that the weakness of the albinism movement in Africa has been the cause of inadequate dialogue amongst albinism organisations on the continent, a situation which has made it impossible to present a stronger albinism voice within the disability movement, even in jurisdictions where albinism is generally accepted as a disability. This has created the further possibility of developing the idea that the rights approach to albinism can be uniform and universalised.

6 Conclusion

A lack of pigmentation constitutes an impairment, which forms one part of the definition of a person with a disability. Despite the existence of this impairment, albinism is not universally characterised as a disability in legal terms. This alone must not prevent or discourage persons with albinism from pursuing their rights under the disability rights mechanism, considering the fact that even the term ‘disability’ itself does not have a universal definition. Thus, this contribution puts forward the view that in Africa, and probably in some other parts of the world, albinism can be legally construed as a disability with respect to both visual impairment and a lack of skin pigmentation. The task ahead is to ensure that the specific needs of persons with albinism are exhaustively addressed in future policies and programmes so as to cater for the full realisation of their rights.

 


1. HRC Persons with albinism: Report of the Office of the United Nations High Commissioner for Human Rights (2013) paras10 & 11.

2. J DiGennaro ‘Sex-specific characteristics as defences to criminal behaviour’ (1983) 6 Criminal Justice Journal 196; SAD Kamga ‘A call for a Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa’ (2013) 21 African Journal of International and Comparative Law 222; J Gillette ‘Pregnant and prejudiced: The constitutionality of sex and race-selective abortion restrictions’ (2013) 88 Washington Law Review 654.

3. S Scott ‘A new category of “colour”: Analysing albinism under Title VII and the Americans with Disabilities Act’ (1999) The Journal of Gender, Race and Justice 469.

4. HRC (n 1 above) para 14.

5. HRC Report of the Independent Expert on the Enjoyment of Human Rights by Persons with Albinism (2016) para 15.

6. HRC (n 1 above).

7. M Mswela ‘The “evil albino” stereotype: An impediment to the right to equality’ (2013) 32 Medicine and Media 89-92.

8. S Bucaro ‘A black market for magical bones: The current plight of East African albinos’ (2010) 15 Public Interest Law Reporter 2.

9. Scott (n 3 above) 521.

10. MK Possi ‘Stigma and people with disability: A review of stigma attached to people with albinism’ (1998) 13 International Journal of Special Education 82; MK Possi ‘Gender and education of people with disabilities in Tanzania’ (1996) 3 Utafiti (New Series) 83; .

11. CD Martin The white African-American body: A cultural and literary exploration (2002) 1.

12. Mswela (n 7 above) 81.

13. N Wan ‘Orange in a world of apples: The voices of albinism’ (2003) 18 Disability and Society 287.

14. C Baker et al ‘The myths surrounding people with albinism in South Africa and Zimbabwe’ (2010) 22 Journal of African Cultural Studies 169.

15. Bucaro (n 8 above) 2.

16. See; Possi (n 10 above); HRC (n 1 above) paras 15-18. The common myths associated with albinism include the following: ‘A person with albinism is born of a white and an African parent’; ‘albinism is a disease’; ‘a person with albinism was conceived while a woman was menstruating’; ‘albinism is contagious’; ‘the lack of pigmentation of a child with albinism can be cured by traditional healers or herbalists’; ‘the skin of children with albinism is delicate at birth but can be “toughened” by exposure to the sun’; ‘a child with albinism is a ghost or a substitute for a proper child by spirits’; ‘persons with albinism are sorcerers, or devils’; ‘a person with albinism is a curse’; ‘contact with persons with albinism will bring bad luck, sickness or death’; ‘persons with albinism are considered to simply vanish (they do not die)’; ‘persons with albinism are apes and a source of money’; ‘people with albinism have the power of seeing in the dark’; ‘pulling out the hair of a person with albinism brings good luck’; and ‘sexual intercourse with a woman or a girl with albinism can cure HIV/AIDS’.

17. HRC (n 1 above) para 42.

18. HRC para 43.

19. I Nzagi ‘Securing the rights of people with albinism in Tanzania mainland: The fight against social exclusion’ unpublished MA dissertation, International Institute of Social Studies, The Hague, 2009 34-35.

20. Nzagi (n 19 above) 36.

21. HRC (n 1 above) para 20.

22. Resolution on Attacks and Discrimination against Persons with Albinism, Human Rights Council Resolution 23/13 of 2013.

23. HRC (n 1 above); United Nations Convention on the Rights of Persons with Disabilities, General Assembly Resolution A/RES/61/106 of 2006.

24. Resolution on Technical Co-operation for the Prevention of Attacks Against Persons with Albinism, Human Rights Council Resolution 24/33 of 2013.

25. Resolution on International Albinism Awareness Day, Human Rights Council Resolution 69/170 of 2014.

26. HRC Report of the Human Rights Council Advisory Committee on the study on the situation of human rights of persons living with albinism (2015).

27. Resolution on the Independent Expert on the Enjoyment of Human Rights by Persons with Albinism, Human Rights Council Resolution 28/6 of 2015.

28. HRC (n 5 above).

29. Resolution on the Prevention of Attacks and Discrimination against Persons with Albinism, African Commission on Human and Peoples’ Rights Resolution 263 of 2013.

30. Addis Ababa Declaration on Ending Discrimination and Violence against Girls in Africa, adopted at the 22nd session of the African Committee of Experts on the Rights and Welfare of the Child, 5 November 2013.

31. Report on Investigative Mission on the Situation of Children with Albinism in Temporary Holding Shelters - Tanzania, African Children’s Committee, 2016, http://www.acerwc.org/investigation/ (accessed 24 June 2016).

32. Resolution 23/13 of 2013 (n 22 above).

33. Nzagi (n 19 above); Scott (n 3 above) 517.

34. M Mswela & M Nöthling-Slabbert ‘Colour discrimination against persons with albinism in South Africa’ (2013) 6 South African Journal of Bioethics and Law 27; Scott (n 3 above) 508.

35. HRC (n 1 above) para 77.

36. HRC para 77.

37. HRC para 77.

38. HRC para 78.

39. HRC para 80.

40. HRC para 81.

41. HRC para 83.

42. HRC para 59(f).

43. HRC paras 34-36.

44. See Scott (n 3 above) 516 and some of the responses to the HRC Advisory Committee’s questionnaire (to States, NHRIs and NGOs) on the situation of human rights of persons with albinism, prepared pursuant to Resolution 24/33 of 2013 (n 24 above).

45. Scott (n 3 above).

46. Scott 517.

48. MW Murugami ‘Disability and identity’ (2009) 29 Disability Studies Quarterly http://dsq-sds.org/article/view/979/1173 (accessed 22 September 2017).

49. Johnstone (n 47 above).

50. As above.

51. Murugami (n 48 above).

52. JA Brune & DJ Wilson ‘Introduction’ in JA Brune & DJ Wilson (eds) Disability and passing: Blurring the lines of identity (2013) 1.

53. As above; Johnstone (n 47 above).

54. Brune & Wilson (n 52 above).

55. JA Brune ‘The multiple layers of disability passing in life’ in Brune & Wilson (n 52 above) 38.

56. Johnstone (n 47 above).

57. Consider some African societies where disability is perceived as a curse.

58. Mswela (n 7 above) 89-90.

59. Johnstone (n 47 above).

60. SR Bagenstos ‘Comparative disability employment law from an American perspective’ (2003) 24 Comparative Labour Law and Policy Journal 656.

61. http://dsq-sds.org/article/view/343/433 (accessed 22 September 2017).

63. Murugami (n 48 above).

64. SE Brown ‘What is disability culture?’ http://www. independentliving.org (accessed 27 September 2017).

65. Johnstone (n 47 above).

66. As above.

67. General Assembly Resolution A/RES/61/106 of 2006 (n 23 above).

68. Preamble CRPD.

69. AS Kanter ‘The promise and challenge of the United Nations Convention on the Rights of Persons with Disabilities’ (2007) 34 Syracuse Journal of International Law and Commerce 291; 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 23.

70. Kanter (n 69 above) 292.

71. As above.

72. As above; AC Hendriks ‘Different definition - same problems - one way out?’ in ML Breslin & S Yee (eds) Disability rights law and policy: International and national perspectives (2002) 195.

73. Kanter (n 69 above) 292.

74. Kayess & French (n 69 above) 23.

75. EO Adebitan & YJ Job ‘Addressing the hotels facility and service needs of persons living with disabilities within Bauchi metropolis of Bauchi state, Nigeria’ (2014) Proceedings of the Multi-disciplinary Academic Conference on Sustainable Development Vol 2 No 1.

76. G Brocco ‘Labelling albinism: Language and discourse surrounding people with albinism in Tanzania’ (2015) Disability and Society 1146.

77. Responses to the questionnaire (n 44 above) by the National Human Rights Organisations for Malawi, Rwanda and South Africa http://www.ohchr.org/EN/HRBodies/HRC/AdvisoryCommittee/Pages/AttacksAgainstPersonsWithAlbinism.aspx (accessed 24 June 2016).

78. Responses to the questionnaire (n 44 above) by the Danish Institute for Human Rights, Asociación española de Ayuda a Personas con Albinismo (Spain), Genespoir (France), and NOAH - Albinismus Selbsthilfegruppe Germany http://www.ohchr.org/EN/HRBodies/HRC/AdvisoryCommittee/Pages/AttacksAgainstPersonsWithAlbinism.aspx (accessed 24 June 2016).

79. Chinese Organisation for Albinism, Albinism Fellowship of Australia.

80. Responses to the questionnaire (n 44 above) by the Albinism Fellowship of Australia, http://www.ohchr.org/EN/HRBodies/HRC/AdvisoryCommittee/Pages/Attacks AgainstPersonsWithAlbinism.aspx (accessed 24 June 2016).

81. As above.

82. Responses to the questionnaire (n 44 above) by the Albinismus Selbsthilfegruppe Germany, http://www.ohchr.org/EN/HRBodies/HRC/AdvisoryCommittee/Pages/AttacksAgainstPersonsWithAlbinism.aspx (accessed 24 June 2016).

83. J Burke et al ‘Media analysis of albino killings in Tanzania: A social work and human rights perspective’ (2014) 8 Ethics and Social Welfare 119.

84. Brocco (n 76 above) 1153.

85. Kamga (n 2 above) 230.

86. SH Braathen & B Ingstad ‘Albinism in Malawi: Knowledge and beliefs from an African setting’ (2006) 21 Disability and Society 610.

87. Sec 2 of Disabled Persons (Employment) Act Cap 184 RE 2002 defines a person with disability (using the term ‘disabled person’) as ‘a person who, on account of injury, disease or congenital deformity, is substantially handicapped in obtaining employment, or in undertaking work on his own account, of a kind which apart from that injury, disease or deformity would be suited to his age, experience and qualification’.

88. Persons with Disabilities Act 9 of 2010.

89. Persons with Disabilities Act (n 88 above) sec 3.

90. Persons with Disabilities (Rights and Privileges) Act 9 of 2006.

91. According to sec 29(1) of the Act, among the functions of the Zanzibar Disability Council is the provision of assistive devices, appliances, UV sunglasses and sun creams and other equipment to persons with disabilities to the maximum extent possible.

92. According to sec 1 of Namibia’s National Disability Council Act 26 of 2004, disability is defined to mean ‘a physical, mental or sensory impairment that alone, or in combination with social or environmental barriers, affects the ability of the person concerned to take part in educational, vocational, or recreational activities’. In Zambia, disability is legally defined as ‘a permanent physical, mental, intellectual or sensory impairment that alone, or in a combination with social or environmental barriers, hinders the ability of a person to fully or effectively participate in society or on equal basis with others’. ‘A person with disability is a person with a permanent physical, mental, intellectual or sensory impairment which, in interaction with various barriers, may hinder that person to fully and effectively participate in society on an equal basis with others’ (Persons with Disabilities Act 6 of 2012 sec 2). In Zimbabwe, the law defines a ‘disabled person’ as being ‘a person with a physical, mental or sensory disability, including a visual, hearing or speech functional disability, which gives rise to physical, cultural or social barriers inhibiting him from participating at an equal level with other members of society in activities, undertakings or fields of employment that are open to other members of society’ (Disabled Persons Act 5 of 1992 sec 2).

93. AK Tugli et al ‘Knowledge of disability rights and the social encounters of students with disabilities in a tertiary institution in South Africa’ (2014) 28 Journal of Social Sciences 147.

94. Persons with Disabilities (Amendment) Bill 2010.

95. See GO Onyango ‘A socio-legal critique of the legal framework for the promotion of rights of persons with disabilities in Kenya’ unpublished MA dissertation, International Institute of Social Studies, The Hague, 2012 23.

96. WJ Aceves ‘Two stories about skin colour and international human rights advocacy’ (2015) 14 Washington University Global Studies Law Review 563. .

97 Constitution of the Republic of Angola 2010 art 21(h); Constitution of Botswana 1966 art 15(3); Constitution of Burkina Faso 1991 art 1; Post-Transition Interim Constitution of the Republic of Burundi 2005 art 22; Constitution of the Arab Republic of Egypt 2014 art 21; Constitution of Eritrea 1997 art 14(2); Constitution of the Federal Democratic Republic of Ethiopia 1995 art 25; Constitution of the Republic of The Gambia 1997 art 33(4); Constitution of the Republic of Ghana 1992 art 12(2); Constitution of Kenya, 2010 art 27(4); Constitution of Lesotho 1993 art 18(3); Constitution of the Republic of Malawi 1994 art 20(1); Constitution of the Republic of Mali 1992 art 2; Constitution of Mauritius 1968, arts 3, 16(3) & (5); Constitution of the Republic of Mozambique 2004 art 39; Constitution of the Republic of Namibia 1990 art 10(2); Constitution of the Republic of Rwanda 2003 art 11; Constitution of Sierra Leone 1991 art 27(3); Constitution of the Federal Republic of Somalia 2012 art 11(3); Constitution of the Republic of South Africa, 1996 art 9(3); Transitional Constitution of

97. the Republic of South Sudan 2011 art 14; Interim National Constitution of the Republic of the Sudan 2005 art 31; Constitution of the Kingdom of Swaziland Act 2005 art 20(1); Constitution of the Republic of Uganda 1995 art 21(3); Constitution of Zambia Act 1991 art 40; and Constitution of Zimbabwe 2013 art 56(3).

98. Constitution of the People’s Democratic Republic of Algeria 1989 art 29; Constitution of the Republic of Benin 1990 art 26; Constitution of Cameroon 1996 art premier; Constitution of the Republic of Cape Verde 1992 arts 1(2) & 24; Constitution of Central African Republic 2004 art 5; Constitution of the Republic of Chad 1996 art 14(i); Constitution of Comoros 2001 Preamble; Constitution of the Democratic Republic of the Congo 2006 arts 13 & 45; Constitution of the Republic of Djibouti 1992 art premier, arts 3 & 6; Constitution of the Republic of Equatorial Guinea 1991 art 15; Constitution of Gabon 1991 art 2; Constitution of the Republic of Guinea Bissau 1984 art 24; Constitution of the Republic of Guinea 1990 arts 1 & 8; Constitution of Côte d’Ivoire 2000 arts 17 & 30; Constitution of the Republic of Liberia 1986 art 11(b); Interim Constitutional Declaration 2011 art 6; Constitution of the Republic of Madagascar 1992 art 8; Constitution of the Islamic Republic of Mauritania 1991 art premier; Constitution of the Republic of Niger 1999 art 8; Constitution of the Federal Republic of Nigeria 1999 art 15(2); Constitution of the Republic of Congo 2002 art 8; Constitution of the Democratic Republic of São Tomé and Principe 1975 art 16(1); Constitution of the Republic of Senegal 2001 art premier; Constitution of Tunisia 1959 art 6. The Constitution was superseded by the Decree-Law 2011-14 on 23 March 2011, relating to the provisional organisation of the public authorities. The said decree does not contain a clear anti-discrimination provision. There have been negotiations for a new constitution. Constitution of the IVth Republic of Togo 1992 art 2. Morocco and the Seychelles have adopted the ‘classical’ juridical equality stipulations by protecting the right of all to equality, but without mentioning any prohibited grounds of discrimination. See Constitution of the Kingdom of Morocco 1996 art 5; Constitution of the Republic of Seychelles 1993 art 27(1).

99. See Constitution of the Kingdom of Morocco 1996 art 5; Constitution of the Republic of Seychelles 1993 art 27(1).

100. Constitution of the United Republic of Tanzania 1977 art 13(5). The same position re-appears in the Proposed New Constitution 2014.

101. T Jones ‘Shades of brown: The law of skin colour’ (2000) 49 Duke Law Journal 1493; Aceves (n 96 above) 583.

102. Jones (n 101 above) 1493.

103. Mswela & Nöthling-Slabbert (n 34 above) 27.

104. Aceves (n 96 above) 563.

105. Aceves 583.

106. Mswela (n 7 above) 89 91.

107. United Nations Declaration on the Rights of Persons Belonging to National or Ethnic, Religious and Linguistic Minorities, General Assembly resolution 47/135 of 1992.

108. J Waugh ‘Social and emotional aspects of albinism’ http://www.tsbvi.edu/seehear/winter99/ albinism.htm (accessed 4 October 2017).

109. A Fayoyin & N Ihebuzor ‘Advocacy for minorities in Africa: Issues and lessons in advancing the rights of albinos in Tanzania and osus in Nigeria’ (2014) I Asia Pacific Journal of Research 113.

110. Wan (n 13 above) 283.

111. See eg UN Enable UN Convention on the Rights of Persons with Disabilities: Some facts about persons with disabilities (2006).

112. .T Shakespeare Disability rights and wrongs (2006) 65.

113. S Larson ‘Magic, mutilation, and murder: A case for granting asylum to Tanzanian nationals with albinism’ (2011) 2 25.

114. See United States Court of Appeals, 9th Circuit ‘Tchoukhrova v Gonzales’ (2015).

115. B Smith ‘Intersectional discrimination and substantive equality: A comparative and theoretical perspective’ (2016) 16 The Equal Rights Review 73.

116. Smith (n 115 above) 76; D Schiek ‘Intersectionality and the notion of disability in EU discrimination law’ (2016) 53 Common Market Law Review 62.

117. As above.

118. Smith (n 115 above) 101.

119. S Fredman Intersectional discrimination in EU gender equality and non-discrimination law (2016) 28.

120. See T Makkonen Multiple, compound and intersectional discrimination: Bringing the experiences of the most marginalised to the fore (2002) 58.

121. Sec 2 of the Persons with Disabilities Act of 2006 defines disability as ‘a substantial functional limitation of daily life activities caused by physical, mental or sensory impairment and environment barriers resulting in limited participation’.

122 The codings which are in the First Schedule to the Act include, among others, ‘skin diseases’ and ‘[e]ye ‘defects’. While albinism is not a disease, the visual issues are not the only challenges to persons with albinism. The codings exist for the purposes of determining ‘whether an impairment has a substantial functional limitation of daily life

122. activities; or whether an impairment has a long-term effect on a person’ (secs 4(1)(a) & (b) of the Persons with Disabilities Act (n 121 above)).

123. Law Relating to the Protection of Disabled Persons in General 1 of 2007.

124. Persons with Disability Act 3 of 2011 sec 2.

125. According to the Employment Equity Act 55 of 1998, ‘people with disabilities’ means ‘people who have a long-term or recurring physical or mental impairment which substantially limits their prospects of entry into, or advancement in, employment’. According to the Social Assistance Act 13 of 2004, a person with a disability is one who is ‘owing to a physical or mental disability, unfit to obtain by virtue of any service, employment or profession the means needed to enable him or her to provide for his or her maintenance’.

126. Persons with Disability Act 715 of 2006.

127. R Galvin ‘The making of the disabled identity: A linguistic analysis of marginalisation’ (2003) 23 Disability Studies Quarterly http://dsq-sds.org/article/view/421 (accessed 22 September 2017).

128. Credit must be given to Under the Same Sun (UTSS), a Canadian-based organisation, also registered in Tanzania, as the only organisation for persons with albinism, which has been at the forefront campaigning internationally for the rights of persons with albinism. The organisation was registered in Tanzania shortly after the reports of the killings of persons with albinism had emerged.


  • Magnus Mfoafo-M’Carthy
  • Associate Professor, Faculty of Social Work and Tshepo Institute for the Study of Contemporary Africa, Wilfrid Laurier University, Waterloo, Canada. This article is part of a larger project funded by the Social Sciences and Humanities Research Council of Canada.
  • Jeff D Grishow
  • Associate Professor, Department of History and Tshepo Institute for the Study of Contemporary Africa, Wilfrid Laurier University, Waterloo, Canada.

  • M Mfoafo-M’Carthy & JD Grishow ‘Mental illness, stigma and disability rights in Ghana’ (2017) 5 African Disability Rights Yearbook 84-100
    http://doi.org/10.29053/2413-7138/2017/v5n1a5
  • Download article in PDF

Summary

Ghana has recently received much attention for human rights abuses against persons with mental illnesses in traditional ‘fetish’ and Christian prayer camps. Evidence has surfaced of Ghanaians with mental illnesses being forced against their will to attend the camps only to be physically abused, forcibly isolated and even chained to trees. Not only do these practices reveal a high level of stigma, but they also contravene the spirit and intention of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Despite the fact that Ghana has ratified in the CRPD and passed a new Mental Health Act in 2012, there has been little reaction in the country towards the harsh treatment of patients with mental illnesses at the camps. Lately, however, Ghanaian disability activists have started to take up their cause, protesting the camps as sites of human rights abuses. Starting with the example of one of these activists, also a camp survivor, the article investigates the potential of a human rights framework as a tool for improving the delivery of mental health services in Ghana.

1 Introduction

In October 2014, the Christian Health Association of Ghana released a film on stigma and mental health to raise awareness about human rights abuses faced by Ghanaians with mental illnesses. The film narrates the story of Doris Appiah Danquah, whose experience with manic depression forced her out of university and into a series of ‘healing’ camps between the late 1970s and early 1990s. In 1978, Danquah earned a place in the Medical School of the Ghana’s premier university, the University of Ghana, after posting top marks at the prestigious Achimota High School in Accra. Her studies did not last long. Shortly after arriving on campus, Danquah began to feel a ‘deep sadness and a deep fear’. She wanted to be alone, skipped classes and struggled mightily as her dream of a medical degree began to slip away. Eventually Doris was diagnosed with manic depression, and her parents realised that she would not be able to complete university without treatment. The University gave her a three-year leave of absence to recover and return to the programme. What followed, however, was 22 years of being moved from institution to institution as Danquah’s family searched in vain for a solution. The first choice was the Accra Psychiatric Hospital, located in the country’s capital. However, the hospital’s psychiatrist turned Doris away, informing her parents that her condition was ‘simply who she was’; that nothing could be done medically; she would never recover, and Doris and her family would have to accept her condition.1

Desperate to find a cure, Doris’ family tried a series of traditional fetish shrines and Christian prayer camps, believing that her condition had a spiritual cause and that ‘Doris’s depressed soul had escaped from the world of reality and needed to be persuaded back home’.2 Doris’s father initially took her to a famous fetish shrine called Akonedi at Larteh in the eastern region of the country. In Larteh, the traditional healers prescribed to Danquah herbs mixed with gin and administered by a caregiver who also helped to dress and bathe her. This placement ended when the caregiver lashed Doris with a belt, catching her eye with the hook, after she had told him that she intended to escape to Accra. Having heard about the beating, Doris’s father moved her to another fetish shrine, the Nana Ntia shrine at Gomoah Fete in the central region.3

This visit also failed and the family moved her to a Christian prayer camp in Kumasi. Treatment at the prayer camp included forced fasting and an ‘intensive routine of prayers and casting away [of] demons’.4 Ms Danquah recounts that she was beaten by camp officials for challenging the truth of the Bible. When she resisted the beatings, she was chained, for days at a time despite the elements, rain or shine; she was released only to bathe and then chained again. One night, the drunk brother of the pastor came to Ms Danquah and hit her with a gin bottle before shackling her. Camp staff also chained her up after unsuccessful escape attempts. She eventually escaped successfully and found herself roaming the streets. Her family found her and sent her to another prayer camp, this time in a remote area past Zebilla in the northern part of the country. Once again Danquah escaped and, according to her account, she decided to return home and heal herself. Gradually she started feeling better and eventually returned to university, graduating with a nursing degree. Recently, Doris found work as the director of an orphanage, and she acts as a strong advocate for the rights of Ghanaians with mental illnesses.5

Doris Danquah claims that she experienced many forms of stigma during her years of involuntary treatment. Many people blamed her for her illness, telling her that the depression was a punishment from God for past wickedness or evil acts. Maybe, others said, she had taken someone’s husband or was a witch who killed her children. Whatever the precise belief, she was told that her manic depression was a divine punishment for her sins because she ‘didn’t serve God well’.6 When she found herself alone on the streets, some people gave her food or money but still expressed deep prejudices. In one example, Ms Danquah recounted that some children gave her a few coins to buy food but threw the plate into a fire after she had finished eating. This seemed to have been a common practice, and Ghanaian psychiatrist Dr Gordon Donnir, who was interviewed along with Danquah in 2014, attributes this to the belief that mental illness is contagious and can be transmitted through direct contact with the ‘infected’ person. In Dr Donnir’s opinion, these actions show that individuals diagnosed with a mental illness are the most stigmatised of any disabled group in Ghana. 7

What should we make of Doris Danquah’s narrative in Still I arise?8 As Nepveux and Beiticks observe, there is a tendency for disability documentaries to present Western, neo-colonial narratives of disability that portray disabled Africans as inferior, passive and in need of Western charitable interventions.9 This is certainly the case in the two films they study - Emmanuel’s gift (Ghana) and Moja Moja (Kenya) - and it certainly could be true of African-produced films such as Still I arise as Ghanaian perspectives such as Danquah’s could be influenced by charitable/neo-colonial models and assumptions about disability. Nevertheless, we argue that Still I arise (Ms Danquah’s story) is different in its emphasis on agency and personal efforts to free oneself from discrimination and stigma through self-healing. This is a story of the strength, perseverance and tenacity of a disabled individual, who takes back power after it was taken from her. It is also a story of rights, in that Ms Danquah talks openly about the violation of human rights in the prayer camps and (to a lesser extent) fetish shrines, and the need to enhance disability rights by changing attitudes towards disabled Ghanaians. In its insistence on rights for persons with mental illnesses as a precursor for self-healing and self-determination, Danquah’s story hits on the core debates over the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) and mental health, and offers an excellent springboard for assessing the potential of the CRPD in light of Ghanaian conditions. First, however, we must address the issue of the validity of Danquah’s claims.

2 Disability, mental illness and stigma in Ghana

Are Ms Danquah’s claims valid in light of what we know about the prevalence and causes of stigma towards persons with mental illnesses in Ghana? Answering this for Ghana is complicated by the fact that many foreign non-governmental organisations (NGOs) and media outlets portray many African countries - and Africa generally - as particularly prone to stigma towards disability. Following Ahmedani, we define stigma with reference to Goffman and Dudley, whose definitions of stigma include attitudes that discredit individuals and discount their identities, as well as stereotypes that portray individuals or groups as inferior against societal norms.10 Using this definition, many popular reports paint a picture of Africa generally as particularly prone to stigma against disabled persons. At best, attitudes of stigmatising result in disabled persons being denied access to health care and education. At worst, they are hidden, locked away, abandoned or even killed. While the popular literature tends to make such pronouncements without solid evidence,11 the weight of recent scholarly research - stimulated by the Movement for Global Mental Health launched in 200712 - does point to widespread stigma in Africa. This research represents a significant shift in opinion over the past decade. Previously, many commentators assumed that stigma towards mental illness was low in Africa compared to that in other parts of the world. This perception was reinforced by a lack of research into stigma and mental illness in Africa. A survey of existing research conducted in 2006 found only 62 publications worldwide between 1990 and 2004 on beliefs and attitudes towards mental illness. The vast majority focused on European countries, and Ethiopia was the only African country on the list, represented by a single study on the north-western part of the country published in 1999.13 Since 2004 many more academic studies have appeared, most likely connected to the advocacy efforts of the Movement for Global Mental Health mentioned above. The more recent work has found evidence of widespread stigma towards mental illness in Africa. For example, researchers have found unexpected high levels of stigma towards persons with mental illnesses among Nigerian clergy and university students, towards persons with psychotic illnesses in South Africa, and in primary schools in Kenya.14 On a comparative level, one study concluded that stigma towards mental illness was worse in Cameroon than in Canada.15

In Ghana, a recent study of disability in Accra reveals evidence of widespread discrimination and stigma towards disabled Ghanaians generally, who are among ‘Ghana’s most excluded members of society’.16 Recent literature on mental illness in Ghana presents a similar picture of high levels of stigma, on four levels: within the family; in public settings; at the workplace; and among health service providers. At the family level, academic research points to high levels of discrimination and stigmatisation against family members with mental illnesses. In the community of Pantang in Accra, Dako-Gyeke and Asumang found that most of the patients had been deserted by their families (spouses, parents and children, among others), beaten up, molested, labelled as witches and accused of causing their own predicaments. They further found that that if persons with mental illnesses were parents, their family members denied them access to their children on the grounds that the parents were dangerous and might harm the children.17 These findings have been corroborated by other research. In a study and focused on the three main psychiatric hospitals in Ghana (Pantang, Accra and Cape Coast), Barke et al found that mental health patients were discriminated against and stigmatised by their families, as some participants asserted that they did not feel comfortable living with persons with mental illnesses or who had a history of mental disorders. Among other things, participants claimed that the behaviour of mental patients was never predictable and, as such, they were dangerous and potentially harmful to family members.18

In a study in Ho in the Volta region, Tawiah found that people with mental health issues were discriminated against and stigmatised at the economic, social and psychological levels within their family settings. At the economic level, family members denied food and the basic necessities of life to relatives with mental disorders. This psychologically impacted them as it affected their self-esteem. Socially, some family members hid relatives with mental illnesses from the public, and verbally abused, ridiculed and mocked them at home.19 The consequences of the above types of abuse in family settings are devastating to the healing processes of Ghanaians with mental illnesses. At the very points where they need the most moral, social, financial and physical support, those who should be the most supportive tend to either abuse them or simply abandon them to their fate. As a result, mental patients always feel isolated and distant from their loved ones, and they develop a low self-esteem.20 At the other end of the spectrum, several studies have found that some families discriminate against family members with mental illnesses through overprotection and excessive sympathy. For example, Thornicroft et al found that, even though family members of mental patients were supportive, the patients sometimes felt they were being overprotected and not given their independence to do certain things.21 Barke et al found that some members displayed an excess of sympathy to relatives with mental disorders. As with overprotection, ‘over-sympathy’ negatively affected the self-determination of Ghanaians with mental illnesses, often by blocking efforts to help them overcome or cope with their conditions. In many cases, excessive sympathy took the guise of pity and a lack of respect for family members with mental illnesses.22

At the societal level, studies have found that it is usually the friends and neighbours of persons with mental illnesses who act in degrading ways towards them and, hence, reproduce discrimination and stigmatisation on a wider basis. For example, Barke et al reported that some participants wanted mental patients to be sent away and isolated from their communities or, at the very least, they refused to live nextdoor to someone known to suffer from a mental illness.23 Dako-Gyeke and Asumang as well as Tawiah confirmed this finding when they discovered that persons with mental illnesses were deserted and shunned by their friends and neighbours. They also found a widespread aversion to marrying people with or who had a history of mental illness. When asked why they harboured these feelings, respondents across several studies accused mental patients of being harmful, dangerous and unpredictable in their behaviour.24

Apart from the fact that people wished them to be isolated from general society or avoided their company, persons with a history of mental illness were also ridiculed and removed from groups or associations they initially belonged to before falling ill. For instance, a Ghanaian woman with a mental illness interviewed by Thornicroft et al said:

I used to be very influential in the local community, I was chair of the Education Committee, but I discovered that they don’t involve me so much anymore ... I used to socialise in my community, then they would be looking at me in a funny way and for a couple of them, it’s like you don’t exist anymore. 25

Of the many community institutions, one might expect that formal churches or other religious organisations - as opposed to prayer camps - would be part of the public sphere where persons with mental illnesses would be embraced more warmly. However, the research that has been done suggests otherwise. For example, Thornicroft et al found that religious institutions also stigmatised and discriminated against their members with mental illnesses. One participant revealed that after she had narrated her ordeal to her church members as a form of testimony, they withdrew themselves from her, and she later regretted testifying to her church members because of the way they reacted towards her.26

Perhaps worse than being removed from or shunned by civic associations, Dako-Gyeke and Asumang also found that that publicly-identified mental health patients were labelled with derogatory language (‘crazy,’ ‘lunatics’, and so forth), and were often left to beg for food along the streets of urban centres in order to survive.27 When people begin to label mental health patients as lunatics, mad or crazy, what is meant is that they are of no use to society any longer. However, the fact is that mental illness can be treated, and those who are suffering could be made responsible and their condition restored if people regard them the same as any other person suffering any other form of illness. However, because of negative public attitudes towards persons with mental illnesses, most mental health patients do not want to be known publicly and, thus, do not seek medical treatment from formal health institutions. Instead, stigma and discrimination often drive Ghanaians with mental illnesses to prayer camps and traditional healers for treatment.28

Ghanaians with mental illnesses are also discriminated against and stigmatised in the workplace by prospective or current employers and colleagues. Employers often refuse to hire individuals with mental illnesses. That this practice may be common is illustrated by Barkeet al, whose recent study reported that 77,2 per cent of mental health patients asserted that most employers will pass over their applications in favour of other candidates without mental health problems.29 In other cases, respondents reported about being dismissed by employers if they developed a mental illness after having been hired. Some employers also admitted to believing that they would lose customers if they employed individuals with visible or known mental illnesses.30 In addition to not being hired or being dismissed, Thornicroft et al reported that some employers would reduce the number of hours or days worked by employees with mental illnesses, although the respondents were not sure whether the employers did so because of discrimination or because they believed that it was for the good of the employee.31 At least one study added a gender dimension to workplace stigmatisation, finding that women reported more cases of discrimination than their male counterparts.32 In addition, multiple studies have revealed that co-workers as well as employers routinely stigmatised and discriminated against persons with mental illnesses. This includes general levels of discomfort working alongside a colleague considered to have a mental illness, as well as more active forms of stigmatisation in the form of humorous, degrading and derogatory comments, and accusations that a co-worker with a mental illness may be dangerous and cause harm to others. 33

The final level at which discrimination and stigmatisation take place is that of health service providers in both formal and informal settings. According to Human Rights Watch, health service providers discriminate against and stigmatise Ghanaians with mental illnesses by denying them food and medicine, refusing to provide them with adequate shelter, subjecting them to involuntary treatment, and physically abusing them in cruel, inhuman and degrading ways.34 This corroborates with the findings of Thornicroft et al, who found one of their participants asserting that she had been forcibly held by a group of health personnel and given an injection against her will.35 Human Rights Watch also established that nurses at times verbally abused and physically inflicted pain on patients with mental illnesses, especially when they were ‘trying to escape, when they complained about pain, and when they failed to take medication, or for failing to follow hospital rules’.36 Ghanaians with mental illnesses are treated in this way whereas others, such as malaria patients, are not, because persons with mental illnesses are stigmatised in the sense of being labelled and stereotyped as inferior or dangerous.

A common thread running through popular reports and academic studies on stigma in Ghana is the idea that mental illness is caused by supernatural forces. For instance, the BBC reported in 2010 that an increasing number of disabled African children were being accused of witchcraft.37 Similarly, as part of a special series on children in South Africa, Voice of America News claimed that children with cerebral palsy were considered by some Xhosa families to be ‘bewitched’ by bad spirits.38 More recently, the Huffington Post claimed:

The most frequently-stated causes of disability in Uganda and Africa at large include witchcraft; a curse or punishment from ‘gods’, anger of ancestral spirits, bad omens, reincarnation, heredity, incestuous relationships, and the misdemeanors of the mother. These misperceptions not only lead to stigma, but also to a belief that children with disabilities should be demonised.39

NGO reports paint a similar picture. In a four-country survey, for example, Plan International stated that respondents from Togo, Sierra Leone, Niger and Guinea commonly said that mental illness often was ‘inflicted due to a “bad spirit”’, or was ‘a curse from God’.40 In Ghana, an oft-quoted report by Human Rights Watch states that ‘disability is widely considered - even by persons with mental disabilities themselves - as being caused by evil spirits or demons’. As such, casting out evil spirits is an important part of the cure, and fasting in prayer camps is believed to facilitate this process.41 Ghanaian beliefs in spiritual causes of mental illness have been confirmed by systematic academic studies. For example, a team led by the respected disability scholar Ursula Read reported that many of the 67 interviewees - including persons with mental illnesses - attributed the illnesses to ‘evil spirits, sorcery and witchcraft’.42 These beliefs, combined with the pervasiveness of discrimination and stigma within the family, in public, at the workplace and among health service providers, result in family members often forcing Ghanaians with mental illnesses to attend fetish shrines or prayer camps for treatment. 43

3 CRPD and mental health

It is in the above contexts that we should consider the potential of the CRPD as a tool for combatting human rights abuses towards Ghanaians with mental illnesses. Opened for ratification in 2006, the CRPD has transformed the discussion of global disability and focused attention on human rights for disabled individuals in the majority world.44 The champions of the CRPD are very optimistic about its potential, claiming that the Convention has produced ‘a paradigm shift in political conceptions of disability’,45 which has triggered a new disability discourse capable of empowering civil society,46 in turn making it possible to ‘legislate a belief change regarding persons with disabilities’.47 One optimist goes as far as writing that the CRPD will lead to the removal of ‘societal barriers that create and reinforce disability’.48 Others are not convinced. Pointing to the African context, Lang and Groce and their colleagues have found that successful implementation has been hampered in Nigeria, Zimbabwe and Uganda by problems of governance (inadequate national disability laws, limited political will) and weaknesses within DPOs (underfunding, overwork, control by paternalistic urban elites). This is particularly disturbing because, to secure their rights, disabled individuals require more resources and support than non-disabled persons.49 Similar problems have been identified in South Africa, Kenya and Ghana.50 The problem is compounded when disabled persons lack the power, money and/or education to claim their rights.51 If this is the case, ‘rights can do nothing but reinforce the status quo, as those left powerless can do nothing [but] make sporadic and/or symbolic claims’.52 By implication, unless a disabled individual gains support from a more powerful and/or wealthy patron, or perhaps moves up the social ladder, a rights-based approach actually may reproduce the marginalisation of disabled individuals in the majority world.53 This effect may be worsened if communities in majority world settings have different conceptions of practices that Western law makers consider to be human rights abuses.54 As we shall see below, the majority world beliefs about human rights - and in our case Ghanaian beliefs specifically - are especially applicable to questions about mental illness.

Of the CRPD’s provisions, article12 (mental capacity), article 14 (equality of liberty and security) and article 17 (physical and psychological integrity) relate most directly to mental health. As with the CRPD generally, these articles reflect the participation of DPOs in the drafting process. As a result, the CRPD privileges ‘the values, preferences and life projects of (disabled persons)’ and seeks to reorient legal regimes with this goal in mind.55

This approach rejects the medical model of disability put forward by non-disabled medical experts, which defines disability as an impairment and takes a charitable approach towards interventions designed to ‘normalise’ disabled bodies. In its place, the CRPD shifts the ground to the social model, which argues that disability is socially constructed by non-disabled actors. As expressed in the CRPD, the social model emphasises autonomy and self-determination in the pursuit of disability rights.56 In relation to mental health, this priority informed the drafting of articles 12, 14 and 17 but, as we shall see, the drafting process was contentious and the results were ambiguous and not unproblematic.

Article 12 sets out the right of disabled persons to play an active role in decisions affecting their well-being. The article takes a very strong stance against substitute decision making, in which a person assumes decision making for another person without their consent. However, it permits supported decision making, whereby a person permits someone else to make their decisions, so long as safeguards are put into place to ensure true participation and consent in decision making.57 However, the article does not set out how this may be achieved in practice, and there are no mechanisms to monitor safeguards or adjudicate disputes between disabled persons and the decision makers should they arise. Article 14 guarantees equality of liberty and security, including protection from arbitrary detention. According to this article, any form of detention solely based on disability without the consent of the disabled person is prohibited.58 However, article 14 does not preclude preventive detention on other grounds, such as danger, if it is ‘de-linked’ from disability, and some governments, including that of Britain, have argued that preventive detention does not violate article 14 if it is justified by the risk posed to the disabled person or their community.59 Article 17 sets out the right to ‘physical and psychological integrity’, which includes protection from compulsory medical treatment. However, it is very brief (only 23 words in total) because of disagreements and a lack of consensus during the drafting process. As a result, governments can (and have) argued that the CRPD allows for compulsory treatment as long as it does not include ‘torture or inhuman or degrading treatment’.60 While the UN Office of the High Commissioner for Human Rights (OHCHR) and the CRPD Committee disagree with this interpretation, it is nonetheless possible for governments to make the case. 61

This brief discussion of articles 12, 14 and 17 raises several questions about the CRPD, mental health and disability rights. In the weakest case, the CRPD leaves much room for interpretation, and its provisions related to mental health have been challenged by governments in the West, including those of Australia and Canada. In the strongest case, the CRPD calls for autonomy and self-determination for persons with mental illnesses and an end to involuntary treatment, coercive physical punishment and substitute decision making. But even the strongest case requires certain prerequisites, especially sufficient access to the resources needed to support decision making and autonomy. The Implementation Manual for the CRPD drafted by the World Network of Users and Survivors of Psychiatry (WNUSP) sums this up as follows:

Autonomy and self-determination are dependent on having sufficient access to resources so that economic and social coercion do not lead to decision making that does not reflect the person’s own values and feelings ... Autonomy and self-determination are also dependent on the existence of meaningful alternatives related to the particular decision at issue. 62

Through their participation in the process of drafting the CRPD, persons with psychosocial and intellectual disabilities have introduced, in Wildeman’s words, ‘the emancipatory project of shifting mental health policy from its historical fixation on involuntariness and incapacity toward the relatively uncharted territory of supports’.63 Wildeman supports this position in calling for the creation of ‘supportive social systems (including access to material resources and a range of meaningful options)’, which she believes ‘are essential to the development and expression of autonomy’.64 The reference to ‘material resources’ is consistent with the argument by the creators of the social model that economic development is a necessary precursor for disability rights. This, as we shall see in the next section, complicates the discussion of mental health rights in the Ghanaian context.

4 CRPD, mental health and Ghana

Against critics who dismiss the CRPD’s approach as ‘fantastical extensions of the social model to the point of denying the phenomenon of impairment’, Wildeman argues that international agencies should use the CPRD as a basis for investigating the social supports required for achieving ‘autonomy and active citizenship’ based on the perspectives of

persons with psychosocial disabilities and also those with intellectual disabilities - including persons with direct experience of capacity determination or coercive interventions - across different cultural, social, and national locations and across intersecting categories of discrimination including race, gender, and age. 65

Doris Danquah is one such person with direct experience of forcible confinement and involuntary treatment. As such, as Wildeman would argue, we should heed Danquah’s call to confront human rights abuses at fetish shrines and prayer camps. At the national level, the first step would be for the Ghanaian government to rewrite its Mental Health Act to make it consistent with the CRPD’s call for autonomy and self-determination. Interestingly, in 2012, the year in which Ghana ratified the CRPD, the Ghanaian government did pass a revision to its 1972 Mental Health Act. The 2012 Act addresses human rights, but it continues to permit involuntary treatment and substitute decision making. According to article 42, a third party may apply to a court to admit a person with a mental illness against their will, if there is a risk of self-harm or harm to others, or if it is believed that their condition will deteriorate significantly. Patients can be admitted either to an accredited facility under the Health Institutions and Facilities Act of 2011, or to an institution recognised by the Minister of Health.66

The current Ghanaian Health Act clearly contravenes the spirit and intention of the CRPD. As a first, step, therefore, it would be reasonable to pressurise the government to revise the Act accordingly. This would at least provide a foundation for mental health advocates, such as Doris Danquah, to lobby for choice of treatment. However, even if the Ghanaian government were to change the Act, achieving the CRPD’s ideals of self-determination and autonomy for persons with mental illnesses would face significant challenges. In the short term, it appears that the Ghanaian government is willing to collaborate with fetish priests and prayer camp leaders in the delivery of mental health care.67 If this practice takes root, the fetish and prayer camps will remain part of the country’s informal system of delivering mental health services, which - in light of the current Mental Health Act - would keep the door open to involuntary admissions without the consent of Ghanaians with mental illnesses. As such, activists, NGOs and other lobbyists could promote human rights and attempt to change attitudes. Some scholars appear to believe that this might be the best way forward, arguing that shrines and prayer camps can treat patients effectively if their leaders are taught to eliminate forcible confinement and abusive behaviour.68 However, there is some evidence that many Ghanaians with mental illnesses accept the necessity of forcible confinement, including chaining, as a result of moral beliefs that place community needs above individual needs.69 Changing beliefs, therefore, might pose a formidable challenge in the short term.

As a long-term solution, social model advocates argue that economic development and equitable distribution of its proceeds are necessary precursors to disability rights, especially in the majority world.70 This idea is present in the CRPD and it is implicit in the WNUSP’s belief - quoted above - that persons with mental illnesses must have access to enough resources to eliminate ‘economic and social coercion’ that may force them to make decisions against their will.71 But would economic development automatically produce changes in culture and attitudes? This is a difficult question to answer. Current attitudes in Ghana towards mental illness and fetish shrines and prayer camps certainly are rooted in culture and society. But rather than being ‘traditional’ in the sense of having existed since time immemorial, they are instead rooted in historical changes connected to colonialism, development and modernity. During the colonial era ‘witchcraft’ and ‘fetish cults’ blossomed in Ghana in the context of the country’s uneven integration into the world economic system. The Akonedi shrine, for example, where Doris Danquah spent her first episode of involuntary confinement, dates to the mid-1800s and emerged as an important healing shrine only during the leadership of the shrine priestess, Nana Ama Ansaa, between 1927 and 1957.72 More obviously, Christian prophets date from colonial times, and they were connected to anti-witchcraft campaigns from the 1920s and 1930s. The preoccupation with witchcraft continued after independence and escalated with the boom in evangelical churches since the 1980s .73 As such, these beliefs are not traditional in the sense of being timeless. Indeed, p resent forms of culturally-based stigma and discrimination towards persons with mental illnesses (and other disabilities) in Ghana are not mere primordial relics of an ancient past. On the contrary, they are expressions of Africa’s uneven development and incorporation into the modern world. African cultural institutions and norms are not static, but instead have shifted and transformed over time in response to the challenges posed by uneven development, poverty, eroding social services and threats to community social cohesion. The lesson here is that, in order to nurture attitude changes, economic growth is not only necessary in a general sense, but it must be equitable as well as robust, reaching into rural areas and down to the village and community level.

5 Conclusion

Numerous factors contribute to the stigmatisation of mental illness in Ghana. One problem is the cultural myth that attributes mental illness to curses, or the visitation of the sins of one’s forefathers, or other forms of personal weakness. These beliefs justify the shunning of the victims and their treatment as second-class citizens. It also explains why people such as Doris Appiah Danquah are sometimes sent to consult fetishes or subjected to abuses in spiritual camps. Clearly, these practices have cultural foundations, and attitudes need to change. Some NGOs, such as Plan Togo, have initiated programmes towards this end. They believe that sensitisation is the key to ending stigma towards disabled persons, and this organisation is working to help parents and children to raise awareness of how important it is to integrate children with disabilities into education and the community. 74

However, is it enough to simply focus on educating and convincing non-disabled persons to shift their attitudes towards mental illness? Our analysis suggests that it is not. Instead, one should search for the underlying roots of these attitudes. In the case of Ghana, these roots are not simply traditional but rather tied to the country’s historical experience with development and modernity, which has produced or strengthened certain ‘traditional’ narratives as opposed to others. In this sense, disability is socially constructed on the foundation of economic roots. Prior to or along with programmes to change attitudes, there must be programmes to deliver equitable economic growth in general, including growth for the non-disabled population and development that provides disabled persons with opportunities for productive activities, it they so choose. If this can be achieved, then disabled Ghanaians - including those with mental illness - might have more opportunities for social inclusion and more power for self-advocacy. In the long term, this could provide a basis for changing attitudes towards mental illness, including the attitudes of the leaders of fetish shrines and prayer camps.

Perhaps more importantly, in the short and medium term proceeds from growth and development should be directed to social supports, including programmes to strengthen the state’s capacity to recruit medical professionals and deliver social services. This addresses a second problem related to overcoming stigma towards mental illness in Ghana: the lack of psychosocial approaches to treatment. Ghana’s mental health system is overly dependent on medication, which can negate the effective treatment of persons with mental illnesses. But even where medicines are effective, Ghana’s lack of psychiatrists and shortage of antipsychotic and psychotropic medications severely limit treatment options. As a result, the psychiatric hospitals are severely overcrowded and families are forced to explore alternative treatment through fetish shrines and prayer camps. In light of this situation, we believe that improving economic conditions and the capacity of the state to deliver medical services are necessary foundations for changing attitudes to reduce stigma. It is not a question of simply altering supposed traditions of stigma, discrimination and social exclusion.

The situation seems dire, but new developments in disability rights have allowed disabled activists to begin to combat stigmatisation and discrimination. After 22 years, Doris Danquah was able to go back to university to complete a nursing degree. She is now a strong advocate for the rights of persons with mental illnesses and, along with other activists, she is working to change socials norms and public policies. Her story deserves a wide audience. She and other disabled Ghanaians need to be supported by changes in the material conditions of their societies. Economic growth, better social service provision and incentives to recruit more medical professionals would be a very good starting point.

 


1. DA Danquah ‘Still I arise: The story of Ms Doris Appiah Danquah’ ( Christian Health Association of Ghana, 2014), https://vimeo.com/109473357 , (accessed 1 August 2016).

2. As above.

3. As above.

4. As above.

5. As above.

6. As above.

7. As above.

8. Danquah (n 1 above).

9. D Nepveux & E Smith Beitiks ‘Producing African disability through documentary film: Emmanuel’s Gift and Moja Moja’ (2010) 4 Journal of Literary and Cultural Disability Studies 237-238 251-253.

10. E Goffman Stigma: Notes on the management of spoiled identity (1963) 2-6; JR Dudley ‘Confronting stigma within the services system’ (2000) 45 Social Work 1; BK Ahmedani ‘Mental health stigma: Society, individuals, and the profession’ (2011) 8 Journal of Social Work Values and Ethics 2.

12. http://www.globalmentalhealth.org (accessed 1 September 2016).

13. MC Angermeyer & S Dietrich ‘Public beliefs about and attitudes towards people with mental illness: A review of population studies’ (2006) 113 Acta Psychiatrica Scandinavia 169.

14. AO Adewuya & ROA Makanjuola ‘Social distance towards people with mental illness amongst Nigerian university students’ (2005) 40 Social Psychiatry and Psychiatric Epidemiology 868; AO Adewuya & ROA Makanjuola ‘Social distance towards people with mental illness in Southwestern Nigeria’ (2008) 48 Australian and New Zealand Journal of Psychiatry 394; NG Igbinomwanhia & JO Omoaregba ‘The attitudes of clergy in Benin City, Nigeria towards persons with mental Illness’ (2013) 16 African Journal of Psychiatry 200; CO Egbe ‘Experiences and effects of psychiatric stigma: Monologues of the stigmatizers and the stigmatized in an African setting’ (2015) 10 International Journal of Qualitative Studies on Health and Well-Being 6-7; DM Ndetei et al ‘Stigmatizing attitudes toward mental illness among primary school children in Kenya’ (2016) 51 Social Psychiatry and Psychiatric Epidemiology 79.

15. KO St Louis & PM Roberts ‘Public attitudes toward mental illness in Africa and North America’ (2013) 16 African Journal of Psychiatry 131.

16. KL Geurts & SGMA Komabu-Pompeyie ‘From “sensing disability” to Seselelame: Non-dualistic activist orientations in twenty-first century Accra’ in S Grech & K Soldatic (eds) Disability in the global south: The critical handbook (2016) 295.

17. M Dako-Gyeke & ES Asumang ‘Stigmatization and discrimination experiences of persons with mental illness: Insights from a qualitative study in Southern Ghana’ (2013) 11 Social Work and Society International Online Journal 5-8.

18. A Barke et al ‘The stigma of mental illness in Southern Ghana: Attitudes of the urban population and patients’ views’ (2011) 46 Social Psychiatry and Psychiatric Epidemiology 1196-1198.

19. PE Tawiah ‘Stigma and discriminations suffered by mental patients and their caregivers in the Ho municipality of Ghana’ unpublished PhD thesis, University of Ghana, 2012 28-29.

20. Dako-Gyeke & Asumang (n 17 above) 5-6.

21. G Thornicroft et al ‘Discrimination in health care against people with mental illness’ (2007) 19 International Review of Psychiatry 113-114.

22. Barke et al (n 18 above) 1196.

23. As above.

24. Dako-Gyeke & Asumang (n 17 above) 6; Tawiah (n 19 above) 28-29.

25. Thornicroft et al (n 21 above) 113.

26. Thornicroft et al 114.

27. Dako-Gyeke & Asumang (n 17 above) 8.

28. UM Read et al ‘Local suffering and the global discourse of mental health and human rights: An ethnographic study of responses to mental illness in rural Ghana’ (2009) 5 Globalization and Health 4 9; Tawiah (n 19 above) 26.

29. Barke et al (n 18 above) 1198.

30. Dako-Gyeke & Asumang (n 17 above) 9-10.

31. Thornicroft et al (n 21 above) 114.

32. Tawiah (n 19 above) 25.

33. Dako-Gyeke & Asumang (n 17 above) 6; Tawiah (n 19 above) 28-29.

34. Human Rights Watch ‘Like a Death Sentence’: Abuses against persons with mental disabilities in Ghana (2012) 17.

35. Thornicroft et al (n 21 above) 114.

36. Human Rights Watch (n 34 above) 17.

37. British Broadcasting Corporation ‘Rise in African children accused of witchcraft’ (2010) http://www.bbc.com/news/world-africa-10671790 (accessed 20 September 2016).

38. Voice of American News ‘African children struggle with poor health care’ 2012 19 http://www.voanews.com/content/the-curse-of-childhood-disability-in-south-africa/1213185.html (accessed 20 September 2016).

40. S Coe Outside the circle: A research initiative by Plan International into the rights of children with disabilities to education and protection in West Africa (2013) 24.

41. Human Rights Watch (n 34 above) 7 16 17 26.

42. Read (n 28 above) 7.

43. Tawiah (n 19 above) 23.

44. ‘Majority World’ is the latest and arguably most accurate label for the world region formerly labelled ‘Third World’, ‘Developing World’ and/or ‘Global South’. C Barnes & A Sheldon ‘Disability, politics and poverty in a majority world context’ (2010) 25 Disability and Society 771-772.

45. H Mannan et al ‘Core concepts of human rights and inclusion of vulnerable groups in the United Nations Convention on the Rights of Persons with Disabilities’ 2012) 6 ALTER - European Journal of Disability Research 172.

46. P Harpur ‘Embracing the new disability rights paradigm: The importance of the Convention on the Rights of Persons with Disabilities’ (2012) 27 Disability and Society 1.

47. MA Stein & JE Lord ‘Future prospects for the United Nations Convention on the Rights of Persons with Disabilities’ in MA Oddný & G Quinn (eds) The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian perspectives (2009) 32.

48. DS Cobley ‘Towards economic participation: Examining the impact of the Convention on the Rights of Persons with Disabilities in India’ (2013) 28 Disability and Society 453.

49. R Lang et al ‘Implementing the United Nations Convention on the Rights of Persons with Disabilities: Principles, implications, practice and limitations’ (2011) 5 ALTER - European Journal of Disability Research 208-211; see also CJ Eleweke ‘A review of the challenges of achieving the goals in the African Plan of Action for People with Disabilities in Nigeria’ (2013) 28 Disability and Society 316-322.

50. M Heap et al ‘“We've moved away from disability as a health issue; it's a human rights issue”: Reflecting on 10 years of the right to equality in South Africa’ (2009) Disability and Society 858-859; BM Opini ‘A review of the participation of disabled persons in the labour force: The Kenyan context’ (2010) 25 Disability and Society; DM Nepveux ‘Reclaiming agency, ensuring survival: Disabled Urban Ghanaian Women's Negotiations of Church and Family Belonging’ (2006) 26 Disability Studies Quarterly [no pagination]; M Ssengooba et al ‘”Like a death sentence”: Abuses against persons with mental disabilities in Ghana’ Human Rights Watch Report 2012 82-83.

51. M Russell ‘What disability civil rights cannot do: Employment and political economy’ (2002) 17 Disability and Society 129.

52. DA Young & R Quibell ‘Why rights are never enough’ (2000) 15 Disability and Society 122.

53. R Malhotra ‘Expanding the frontiers of justice: Reflections on the theory of capabilities, disability rights, and the politics of global inequality’ (2008) 22 Socialism and Democracy 96-97.

54. Read et al 11-12.

55. S Wildeman ‘Protecting rights and building capacities: Challenges to global mental health policy in light of the Convention on the Rights of Persons with Disabilities’ (2013) 41 Journal of Law, Medicine and Ethics 58.

56. Wildeman (n 55 above) 59.

57. Wildeman 56-58.

58. P Bartlett ‘The United Nations Convention on the Rights of Persons with Disabilities and mental health law’ 2012 75 Modern Law Review 767-768.

59. Bartlett (n 58 above) 772 775.

60. Bartlett 756.

61. Wildeman (n 55 above) 57.

62. Quoted in Wildeman (n 55 above) 59.

63. Wildeman (n 55 above) 60.

64. Wildeman 59.

65. Wildeman 60.

66. Secs 18 & 22 Ghana Mental Health Act 846 of 2012.

67. D Arias et al ‘Prayer camps and biomedical care in Ghana: Is collaboration in mental health care possible?’ (2016) 11 PLoS ONE 2-3.

68. A de-Graft Atkins ‘Mental illness and destitution in Africa: A social-psychological perspective’ in E Akyeampong et al (eds) The culture of mental illness and psychiatric practice in Africa (2015) 134-135 138.

69. Read et al (n 28 above) 10-12.

70. Barnes & Sheldon (n 44 above) 778-779.

71. Quoted in Wildeman (n 55 above) 59.

72. OA Boakyewa ‘Nana Oparebea and the Akonnedi Shrine: Cultural, religious and global agents’ unpublished PhD thesis, Indiana University, 2014 48-49.

73. P Gifford ‘A View of Ghana's new Christianity’ in L Sanneh & JA Carpenter (eds) The changing face of Christianity: Africa, the West, and the world (2005) 84-85; TC McCaskie Anti- witchcraft cults in Asante: An essay in the social history of an African people’ (1981) 8 History in Africa 137-138.


  • Mark P Mostert
  • PhD, Regent University, Virginia Beach, Virginia, United States of America.
  • Martha M Weich
  • BA Hons BTH; Vicar, United Evangelical Lutheran Church, South Africa.


Summary

Across Africa trafficking in albino body parts is far more complicated than might first be assumed, as this activity is merely the end result of a complicated process with origins far removed from the point of sale. The literature in this area tends to focus on either (a) the actual act of procuring and selling body parts; or (b) loosely-related and fairly vague reports of why this process flourishes. There is no extant overarching conceptual framework linking key underlying interrelated vectors that combine to drive severe exploitation of persons with albinism, (for instance, stigma; traditional and other cultural beliefs; the status and impact of authority figures; local, regional and national discrimination; the financial impact and economy of scale in trafficking body parts, and so forth). The absence of such a framework directly hinders proposing or implementing effective solutions, as these solutions are unlikely to succeed if they ignore the highly-symbiotic relationships among the undergirding vectors. Therefore, we propose an initial conceptual framework that unpacks crucial connections among related variables impacting trafficking in albino body parts in Africa, and then use the framework to suggest areas of emphasis to reduce and eliminate the trafficking of these body parts in Africa.

1 African context

Trafficking in human body parts is a persistent, intractable international problem and is a direct response to the ever-growing need for transplantable organs worldwide. However, there is an even more sinister set of circumstances in Africa: The trafficking in body parts of Africans with albinism for use as magical charms and in magical potions, in several countries, has reached crisis proportions.

Exact statistics of albino killings, maimings and abductions are not currently available. However, these practices are likely to occur across most of the continent. A recent report indicated that in 25 African countries, there had been 185 killings and 297 survived attacks. African countries known to be involved in the trafficking of albino parts include Tanzania, Burundi, Kenya, the Democratic Republic of the Congo (DRC), Mozambique, Malawi, South Africa and Swaziland. Further isolated reports of killings and attacks have come from Benin, Botswana, Burkina Faso, Burundi, Cameroon, Côte d’Ivoire, the DRC, Egypt, Ghana, Guinea, Kenya, Lesotho, Malawi, Mali, Mozambique, Namibia, Niger, Nigeria, Rwanda, Senegal, South Africa and Swaziland.1

Three brief representative examples suffice: Malawi, Kenya, and Burundi and, with attention to the apparent ground zero of trafficking in persons with albinism, Tanzania.

1.1 Malawi

Irinnews2 recently reported that from early 2015 to May 2016 ritual killings of persons with albinism escalated in Malawi with 17 cases documented along with 66 abductions and other albinism-related crimes. The purpose of the murders and abductions was to sell body parts to witchdoctors and other practitioners of traditional medicine.

For example, a teenager with albinism watching a soccer match was abducted and later found dead without his hands and feet, which were allegedly sold to a dealer in Mozambique. Elsewhere, a 30 year-old woman was murdered, her breasts and eyes removed.3

1.2 Kenya

In Kenya, there have been at least 75 murders of children and adults with albinism since 2000. There is little information on murder and abduction attempts, but they are fairly widespread, especially in rural parts of the country. For example, in September 2015 three men attacked a 56 year-old home owner demanding money. When the victim refused, the attackers suggested they cut off a hand or ear to sell in neighbouring Tanzania.4 The victim was cut deeply several times around his ear and his arms before the assailants fled. Officials suggested that such attacks were a direct result of the government’s crackdown on albino hunters in neighbouring Tanzania.5

1.3 Burundi

While Burundi is home to several thousand Africans with albinism, trafficking in body parts has until recently been fairly contained. However, as trafficking has increased in neighbouring Tanzania, and with the Tanzanian government’s subsequent action to eradicate albino hunters, attacks are escalating in Burundi. For example, in 2012 six heavily-armed men attacked a group of children in their home. One child was kidnapped and later found dead without her arms and legs. There have been other reports of albino bodies being disinterred and mutilated. The last 10 years have seen 21 murders of persons with albinism; another 13 survived attacks; and several graves have been robbed of corpses of persons with albinism.6

1.4 The continental trafficking dynamo - Tanzania

While it is likely that trafficking in body parts occurs in many places across the continent, there is little doubt that ‘ground zero’ for the crisis is Tanzania. The current spate of killings began in October 2006, in and around the city of Mwanza on the shores of Lake Victoria, a region with the highest per capita number of witchdoctors in the country.

By 2008, the Tanzanian government responded in several high profile ways, including appointing a woman with albinism to the national parliament, banning all traditional healers and witchdoctors from practising their trade, and declaring the killing of persons with albinism a capital crime. Between 2006 and June 2016, there were 76 killings, 69 attack survivors, one abduction survivor, 17 grave robberies, and two failed grave robbery attempts.7

Given these scenarios, there is a need to understand how to ameliorate the problem. As a starting point, we suggest an explicit framework of contributing and intervention factors that impact persons with albinism from their immediate context through more distanced contexts and which merit attention if the trafficking crisis is to be effectively addressed.

What is currently available in the extant literature related to the plight of persons with albinism can be divided into contributing and intervention factors. Contributing factors are those that impact and shape the lives of persons with disabilities in a negative way. Intervention factors are those that seek to positively address the negative contributing factors.8 These factors are addressed below as part of a nested set of systems that lay out the proximity of these factors to any person with albinism.

Both contributing and intervention factors can occur in the immediate context of persons with albinism, or be further distanced from where they live their lives. However, whether in close proximity or further away, these factors are interrelated and nested to form a complex conglomerate of the world of persons with albinism.

A useful framework to set the contributing and intervention factors in context is provided by Bronfenbrenner.9

2 Bronfenbrenner

Bronfenbrenner describes a series of four distinct yet interrelated ecological settings when studying a subject, in this case persons with albinism and trafficking in body parts. Originally developed for ecological educational research, these settings serve the purpose of defining the space around the topic to be studied and, while these spaces are specific and circumscribed, they are both interrelated and nested the one within the other. These settings are the microsystem; the mesosystem; the exosystem; and the macrosystem.

2.1 Microsystem

The microsystem is the immediate setting in which the object of the study, here persons with albinism, resides. This system contains the elemental factors of time, place, activity and role. Settings are defined as the places in which subjects engage in specific activities in specific roles (for instance, roles such as that of parent, teacher, son, daughter, and so forth).

2.2 Mesosystem

The mesosystem is a system of interrelated microsystems.

2.3 Exosystem

The exosystem is an extension of the mesosystem including wider social entities that influence the microsystem and mesosystem. Examples may include major societal institutions operating at the local/community level, such as the world of work, the neighbourhood, media, government agencies, communication, transport, social networks, and so forth.

2.4 Macrosystem

The macrosystem is the widest and broadest system, representing the larger cultural context such as economic and legal/political systems.

Based on previous work in this area that identified both contributing and interventions factors, we illustrate contributing and intervention factors in Bronfenbrenner’s nested systems in Figure 2.

Figure 1: Bronfenbrenner’s ecological systems

Chapter 6 2017-1

 

Figure 2: Bronfenbrenner’s systems applied to PWA contexts

 Chapter 6 2017-2

This representation makes it clear, according to the extant literature, where concentrations of support and assistance for Africans with albinism reside. In the microsystem, the most immediate of the four contexts, social connections and community issues around persons with albinism are apparently improved by relying on bettering intrapersonal reflections as a means of assimilating persons with albinism among their immediate social systems of family, friends and the immediate community, for example the village. In the next-closest context, the mesosystem, factors negatively contributing to persons with albinism, appear counterbalanced by attention to and the fostering of interpersonal relationships and involving community and other local leaders to reinforce the legitimacy of persons with albinism. At the next contextual locale, the exosystem, broader considerations around persons with albinism, again, mostly negative, are counteracted by the efforts of local organisations and institutions; grassroots outreaches; informal education; socio-economic rehabilitation; and advocacy for and by persons with albinism. Finally, the macrosystem, the farthest context from where persons with albinism reside, seeks to implement national initiatives and legal precedent via governmental strictures, formal education initiatives, and applications of national and international law.

Thus, all current contextual representations are focused on ensuring that persons with albinism are more fully included, respected, and granted their human rights as fully-inclusive members of their societies. Every resource noted above is aimed at combating a host of legitimate problems, but with scant attention to the crisis of kidnapping, killing and body part harvesting of persons with albinism, notwithstanding a very real general awareness about the trafficking crisis.

Below we describe the trafficking problem in terms of an entire trafficking cycle, its topography in relation to persons with albinism, and some basic approaches necessary to ameliorate the trafficking in body parts of persons with albinism in Africa.

3 The problem

The trafficking in body parts of persons with albinism, economically, is a simple matter of supply and demand. If there were no demand for magical charms or potions, or the willingness of customers to pay exorbitant amounts of money for them, there would be little impetus for this grisly trade. However, the demand is very real and drives the trafficking market and its various players in a commercial trafficking cycle that is well established.

Thus, the entire trafficking process begins and ends with customers who demand charms and potions thought to contain magical qualities. Customers approach a witchdoctor who is the key catalyst setting the process in motion. Depending on the customer’s wishes, the witchdoctor will determine the body parts needed for the charm or potion and will then contract the attackers to procure the specific body parts. The attackers, however, need pertinent information about where they might acquire these body parts, that is, the location of persons with albinism. Attackers consult with scouters whose task it is to know where to find a suitable person with albinism and who the sellers are. Sellers are defined as those closest to the albinism victims who provide real-time information about where the victim may be found. Based on this information, the attack on the person with albinism is carried out and the relevant body parts procured. Transporters, who may or may not be the attackers, transfer the body parts to the witchdoctor after dealers have set or negotiated prices with both the transporters and the witchdoctor. Upon delivery to the witchdoctor, the magical charm or potion is manufactured and sold for profit to the customer. We refer to this process as the commercial trafficking cycle, appearing in Figure 3.

Figure 3: The commercial trafficking cycle10

 Chapter 6 2017-3

3.1 The commercial trafficking cycle and proximity

An often overlooked quality of Bronfenbrenner’s nested systems is the obvious implication that, while nested, the systems are also topographically distanced the one for the other and, therefore from the subject being studied (in this case persons with albinism). That is, the closest system to the subject - here persons with albinism - is the microsystem, with the other three systems (meso-, exo- and macrosystems) being further away. It is this quality of proximity that may also be applied to the stakeholders in the commercial trafficking system to unpack contact between players and their distance closer to, or further from, the victim, as shown in Figure 4 as a series of proximity levels. At level 1, there is no contact (NC) between the victim with albinism and the customer and the witchdoctor. At Level 2, there is intermediate contact (IC) between the victim and scouters and sellers, who are immediately in the vicinity of the victim with albinism, the scouter having to know the immediate whereabouts of the person with albinism and the seller being a direct acquaintance of this person. Finally, in terms of proximity, full contact occurs when the assailants physically attack the person with albinism that results in either severe maiming or death as the ordered body parts are procured. Thereafter, proximity recedes in reverse order of that preceding the attack. Transporters of the body parts and dealers who are the middle men setting prices are classified as having intermediate contact seeing that they are in proximity to the person with albinism’s body parts rather than the person with albinism themselves. Finally, to complete the process, the witchdoctors receive the body parts, manufacture what the customer ordered and the transaction is thereby completed. Here, neither party has any actual contact with the person with albinism.

Figure 4: Trafficking commercial cycle and proximity

 Chapter 6 2017-4

4 Solutions

Clearly, this state of affairs calls for immediate action at every level of society. The extant literature, however, as with the contributing and intervention factors discussed earlier, notes actions that are heavily weighted toward the protection of, and advocacy for, persons with albinism in the face of organ trafficking issues. These may also be placed within Bronfenbrenner’s nested systems and are amalgamated from suggestions in the literature. 11

At the level of the microsystem, the immediate setting, literature suggestions centre on how to protect, assist and provide advocacy for persons with albinism. At the level of the mesosystem, a related set of settings, the literature suggests that law enforcement entities have the capacity to detect organ trafficking, and that awareness of organ trafficking across the community be operationalised. At the level of the exosystem, the settings where social structures and institutions reside, suggestions include optimising co-operation among all entities involved in combating trafficking; the strengthening of local and national justice systems and jurisdictions; collecting and analysing data related to trafficking; and strategic advocacy efforts at the level of state institutions. Finally, at the level of the macrosystem, which encompasses cultural and other national institutions, the literature calls for co-operation between countries to eradicate trafficking; the application of international pressure; and the call for special rights for persons with albinism under national and international law.

What is clear is that these efforts, no doubt well intended, are scattered, often unrelated, and nowhere near as substantial and interconnected as they need to be to start making a difference to the lives of persons with albinism whose lives are threatened because of the procurement and trafficking of their organs. Here the question is ‘What are the forces needed to detect and destroy the commercial trafficking cycle in albino body parts?’

While victim protection/assistance and self-advocacy are no doubt helpful, they are not sufficient at the level of the microsystem. We suggest that other vectors be considered, as summarised in Figure 5.

4.1 Protection

First, protection cannot be left to the local authorities that might be understaffed, perhaps corrupt and, perhaps because of negative perceptions, could be unco-operative in protecting persons with albinism. A culture of value, understanding, empathy and tolerance for persons with albinism must be established so that those closest to these persons are resolute in protecting them. Furthermore, strengthening these ties will make it more likely that potential perpetrators will be identified and reported to the authorities, thereby lessening the chances of an attack. Generally, in most African settings, the local community is much more immediate and invested in curbing crime, and of doing so proactively, than local law enforcement officials who, by definition, are almost always reactive. Second, knowing that a particular location is hostile to potential perpetrators may establish ‘safe zones’ where persons with albinism will at least be somewhat assured that there are places where they are less likely to be harmed.

4.2 Co-operation between citizens and law enforcement

In relation to the discussion directly above, it stands to reason that the greater the positive co-operation between citizens and law enforcement at any level, but especially at the local level, is crucial to deflecting perpetrators who will be more likely to know that such co-operation may lead to their apprehension. This co-operation, however, assumes that citizens trust law enforcement personnel and can be assured that their efforts will be dealt with efficiently and in the best interests of persons with albinism. It also assumes that law enforcement officers have received appropriate training about the plight of persons with albinism and are able to model tolerant behaviour to these persons within their jurisdiction.

Figure 5: Suggested vectors necessary to protect persons with albinism from attacks

 Chapter 6 2017-5

4.3 Raising awareness

Here the issue of raising awareness is not only related to ignorance about persons with albinism, but specifically about the issue of albino organ trafficking. Generally, raising awareness is a herculean task given opposing societal, cultural and economic forces, and is perhaps much more of a challenge related to persons with albinism and organ harvesting. Awareness of the trafficking issue may be an even larger challenge given that it does not occur everywhere and, by its nature, is secretive. Concerted awareness campaigns would be needed to make every citizen aware of the trafficking issue and how to be alert for signs of possible collusion and attacks in their communities. In this day and age of electronic media, we suggest that there are a myriad of opportunities for advocacy efforts to be much more effective than in the past.

4.4 Operational co-operation between all parties

Co-operation between citizens and authorities at the local level is only the beginning of the huge challenge faced in getting everyone on the same page of the playbook. Law enforcement, the legal system, the community, political, local and regional leaders, and so forth, must all be able to interact in the best interests of persons with albinism generally in relation to the commercial trafficking cycle in particular. Given the enormity of this task, is it incumbent on governments to first acknowledge the challenges faced by their citizens with albinism, and then similarly in relation to the procurement and trafficking issue. This, undoubtedly, creates huge challenges for all concerned but it is crucial if the procurement and trafficking crisis is to be acknowledged, let alone effectively addressed.

4.5 Strengthening the justice system

As noted elsewhere, while every African justice system contains legal and other statutes related to maiming, abduction and trafficking, this is no guarantee that any crimes perpetrated against persons with albinism are automatically addressed. In this regard, there are arguments to be made that along with the overall strengthening of legal statutes protecting persons with albinism, law makers might be well served to specifically single out crimes against these persons as a special legal category with concomitantly more severe sanctions. This may take the form of special legal sanctions, such as hate crime legislation.

4.6 Data collection

In any endeavour, it is not possible to address a problem without understanding its cause, extent and sequelae. In this regard, there is virtually no data available anywhere in Africa or the extant literature delineating the extent, depth and ramifications of the albino organ procurement and trafficking crisis. Without this data, any and all attempts at solving the problem will be weakened by not knowing in comprehensive detail the overall parameters of the crisis. It is not enough to simply understand that there is a commercial trafficking cycle without, for example, understanding the nuances of the cycle’s moving parts, the forces at play influencing the cycle, the extent of the trafficking networks, why networks seem to exist in some places but not others, and so forth.

4.7 International aspects

There is little doubt that as the procurement and trafficking in organs of persons with albinism and others become clearer, it will be obvious that not all trafficking is local, but rather is regional and international. Thus, it will become increasingly necessary for regional and international co-operation to stem the tide and break the cycle. Of necessity, these levels of co-operation involve not only governments but also international agencies that have an interest in ending these crimes. This is a significant challenge for all parties concerned, especially seeing that at this level progress, no matter how co-operative, is usually very slow. Once there is some level of co-operation on the extent of the problem and how it should be addressed, then international pressure can be exerted on those countries that do not co-operate in eradicating these crimes or that are responsible for very slow or non-existent implementation of agreed-upon interventions. Finally, at the international level, there are currently efforts to grant persons with albinism special rights under international law, the aim being that once this is achieved, eradicating the crimes of organ procurement and trafficking will be more effectively addressed.

The abovementioned issues are certainly important, but they do not address the second obvious question we pose: ‘What should be done when trafficking is uncovered and its players apprehended?’

We suggest, as a starting point, that the following be considered:

4.8 Judicial punishments

There is little doubt that the procurement of the organs of persons with albinism involves any number of serious crimes irrespective of the players’ distance from the actual attack and organ procurement. Consequently, judicial punishment is a logical outcome should perpetrators be apprehended. Still, the issue is perhaps not as clear-cut as it should be. While all African countries have statutes that cover murder and kidnapping, and some specifically have statutes addressing organ procurement and trafficking, the intersection of these illegal acts with deep-seated social attitudes and stigma may play a significant part in how these punishments are adjudicated. For example, it is not unreasonable to imagine members of law enforcement or even members of the judicial system perceiving the murder of persons with albinism as less heinous than that of other citizens, with concomitant discrimination in the delivery of verdicts and subsequent punishments. Furthermore, a major issue relates to the actual implementation of the law in this instance. For example, Tanzania, after the recent spate of killings of persons with albinism, instituted the death penalty for certain levels of perpetrators.12 However, effective and efficient implementation of the law has been inconsistent at best for any number of legal, societal and national reasons. Currently, there is very little in the literature to suggest how law enforcement and the conviction of perpetrators can become more fully and consistently implemented country or continent-wide.

4.9 Rehabilitation

Most legal systems recognise that while punishment is a major aspect of the law, there is also the need, where possible, to rehabilitate convicted criminals while they are incarcerated or after they are released. This recognition, however, does not necessarily translate into rehabilitation programmes for offenders. In relation to persons with albinism and organ trafficking, a distinction needs to be made between rehabilitation to integrate offenders back into civil society and rehabilitation of attitudes and perceptions about persons with albinism. General rehabilitation programmes are few and far between in many African countries, and the literature shows no record of rehabilitation attempts related to perpetrators of trafficking in organs of persons with albinism.

4.10 Reconciliation

While less often acknowledged than judicial punishment and rehabilitation, reconciliation can be an effective tool in mitigating future animus and crime. For example, the Gacaca courts13 established in Rwanda after the 1994 genocide, aside from their justice-based applications, contained a significant element related to reconciling victims and perpetrators, especially when both parties continued to live in close proximity to each other. Similar elements were a visible part of South Africa’s Truth and Reconciliation Commission14 when investigating the many atrocities of apartheid. While full and unconditional reconciliation may not always occur, reconciliation could be a significant vehicle for bridging the gap between perpetrators of albino organ trafficking and the families and loved ones of victims. Again, as with the Rwandan case, victims and perpetrators are likely to reside in close proximity and interact regularly in their communities. We were unable to uncover any reports of reconciliation programmes related to albinism victims and their perpetrators.

4.11 Reparations

The notion of reparations generally seeks to ‘make whole’, however imperfectly, those aggrieved by a crime. In some systems this takes the form of monetary or asset compensation; community service or prominent social statements of regret or acknowledgment; and the perpetrators’ assumption of responsibility for the crime committed.

There is little doubt that the surviving loved ones of murdered persons with albinism suffer a great deal not only over the loss of their loved one, but in knowing how and why the victim was killed. While any form of reparation is hardly adequate to compensate for this horrific state of affairs, it might well go some way to assuaging the psychological and emotional wounds incurred by the crime.

4.12 Retraining

Appropriately, many have noted that albino organ procurement and trafficking is a lucrative business that rewards players at every stage of the commercial trafficking cycle. Typically, this is attached to arguments of poverty and high levels of unemployment, the general idea being that were better economic opportunities available, players would be less likely to engage in trafficking activities. This is problematic on two fronts. First, it is unlikely that in most African countries problems of poverty and unemployment will be solved in the near future and, second, even should employment be close to 100 per cent, it is unlikely that these jobs would be as lucrative as trafficking in albino body parts. On the other hand, however, there is little evidence either that poverty eradication and employment programmes could, even in some small way, mitigate this issue. The simple answer is that the entire set of issues related to how to deal with trafficking in body parts of persons with albinism remains largely unexamined and unaddressed.

5 Conclusion

The article laid out three crucial vectors related to the crisis of persons with albinism in Africa.

First, we noted that there currently exists a significant number of contributing and intervention factors nested within all aspects of African society that seek to address the challenges faced by persons with albinism. While this scenario is far from complete, and while many current interventions may or may not be effective, it is clear that the community of persons with albinism in some countries are being acknowledged and their issues addressed, however imperfectly. Here efforts need to be increased in terms of both intervention focus and efficacy to make the lives of PWA better on all counts. Furthermore, these efforts are significantly uneven. For example, efforts in Tanzania far outstrip efforts elsewhere to address not only the wellbeing of persons with albinism, but also to attempt to curb the commercial trafficking cycle. Not only must efforts continue in Tanzania, but they must be more seriously addressed wherever persons with albinism are found.

Second, we analysed the commercial trafficking cycle and noted the proximity of various players to the victim. It is important to articulate this cycle and proximity issues as a starting point for addressing how, eventually, it might be disrupted and eradicated. The cycle has only recently been articulated, and there is no evidence in the literature that we could find that addresses the cycle in its complexity and influence, let alone speculating on effective solutions. For example, virtually no attention is paid to players other than the attackers. While this focus is on its own terms necessary, it is not sufficient, as it is equally important to consider the entire set of players and how they (significantly) contribute to the procurement of organs of persons with albinism.

Third, we gathered from the literature what prophylactic efforts were available specifically targeting the safety of persons with albinism as potential victims for organ procurement and trafficking and how they were nested in proximity to these persons. What is clear in this regard is that current efforts are piecemeal and scattered; much more ‘Band aid’ solutions to immediate problems than an actual co-ordinated effort that addresses, at least, the albinism side of the trafficking issue. Clearly, the paucity of efforts here is a boon to those profiting from the commercial trafficking cycle in that they are usually able to easily circumvent whatever paltry efforts exist.

In sum, we acknowledge that the very real plight of persons with albinism is beginning to be noticed and addressed, albeit in a piecemeal and somewhat unco-ordinated way, but that at every level, from the person with albinism in an African village to the national and international structures that govern the globe, there is so far no measured, logical, sequenced approach to adequately protect and include Africans with albinism.


1. Under the Same Sun ‘Reported attacks of persons with albinism - Most recent attacks included’ 18 September 2017 http://www.underthesamesun.com/sites/default/files/ Attacks%20of%20PWA%20-%20extended%20version.pdf (accessed 22 September 2017).

2. Irinnews ‘Magic and murder: Albinism in Malawi’ 5 August 2016 https://www.irinnews.org/fr/node/256222 (accessed 22 September 2017).

3. Amnesty International ‘Malawi: Stop ritual murders of people with albinism’ 9 August 2016 https://www.amnesty.org/en/get-involved/take-action/stop-albinism-killings-in-malawi/ (accessed 22 September 2017).

4. ‘Attackers in Kenya try to hack off body parts from albino for sale in Tanzania as polls near’ Mail and Guardian 14 September 2015 http://mgafrica.com/article/2015-09-14-attackers-in-kenya-try-to-hack-off-body-parts-from-albino-for-sale-in-tanzania-as-polls-near (accessed 22 September 2017).

5. ‘Kenya's albinos moved away from Tanzania border amid witch doctor threat’ The Telegraph 23 September 2015 http://www.telegraph.co.uk/news/worldnews/africaan dindianocean/kenya/11885641/Kenyans-albinos-moved-away-from-Tanzania-border-amid-witchdoctor-threat.html (accessed 22 September 2017).

6. Under the Same Sun (n 1 above).

7. Amnesty International (n 3 above).

8. M Mostert ‘Stigma as barrier to the implementation of the Convention on the Rights of Persons with Disabilities (CRPD) in Africa’ in C Ngwena et al (eds) African Disability Rights Yearbook 2016 3.

9. U Bronfenbrenner ‘The experimental ecology of education’ (1976) 5 Educational Researcher 5.

10. J Bell ‘Motivated by profit and witchcraft beliefs: East African networks target people with albinism’ 2008 http://www.flinders.edu.au/ehl/fms/law_files/Criminal%20 Justice/Motivated%20by%20profit%20and%20witchcraft%20beliefs_Burke.pdf (accessed 20 September 2016).

11.

12. Mail and Guardian (n 4 above).

13. T Hauschildt ‘Gacaca courts and restorative justice in Rwanda’ 15 July2015 http://www.e-ir.info/2012/07/15/gacaca-courts-and-restorative-justice-in-rwanda/ (accessed 15 September 2017).

14. L McLeod ‘Reconciliation through restorative justice: Analysing South Africa's truth and reconciliation process’ Spring 2015 http://beyondintractability.org/library/reconciliation-through-restorative-justice-analyzing-south-africas-truth-and-reconciliation (accessed 18 September 2017).


  • Faraaz Mahomed
  • Visiting Research Fellow, Centre for Applied Legal Studies, University of the Witwatersrand, Johannesburg, South Africa; Harvard Law School Project on Disability
  • Michael Ashley Stein
  • Extraordinary Professor, Centre for Human Rights, Faculty of Law, University of Pretoria, South Africa; Visiting Professor, Harvard Law School; Executive Director, Harvard Law School Project on Disability.
  • Professor Stein is grateful to the Weatherhead Center for International Affairs, Harvard University for supporting this research.

  • F Mahomed & MA Stein ‘De-stigmatising Psychosocial Disability in South Africa’ (2017) 5 African Disability Rights Yearbook 64-83
    http://doi.org/10.29053/2413-7138/2017/v5n1a4
  • Download article in PDF

Summary

Stigma and associated discrimination against persons with psychosocial disabilities constitute a considerable barrier to the realisation of the highest attainable standard of health in South Africa, Africa, and further afield, constituting a significant human rights violation. This situation is evidenced and exacerbated by mental health as a whole remaining under-prioritised in law, policy and resource allocation. States parties to the Convention on the Rights of Persons with Disabilities (CRPD) have a duty to address stigma and discrimination through awareness raising and education. Some important commitments have been made in this respect, particularly at the policy level in South Africa. Nevertheless, and as demonstrated by tragic recent events, effective implementation remains lacking. This article lays out the obligations incumbent upon the South African government to address stigma and discrimination on the basis of psychosocial disability as a public health and human rights imperative by examining positive duties incorporated into international instruments and domestic law and policy. It further considers the role of political de-prioritisation of mental health and how this constitutes stigma of a systemic nature, using case law and examples of research and best practice from South Africa, Africa generally, and beyond. We conclude that South Africa is failing to meet its obligations to persons with psychosocial disabilities, and recommend that positive duties be emphasised in potential disability-specific legislation; high-level political commitment and co-ordination is secured for mental health; the CRPD’s independent monitoring requirement is urgently fulfilled; and contextually-relevant interventions are crafted with the active participation of persons with psychosocial disabilities and their representative organisations.

1 Introduction

The World Health Organization (WHO) estimates that over 450 million people worldwide live with psychosocial disabilities,1 a figure some experts believe to be a severe under-approximation.2 Empirical certainty is especially challenging in South Africa where the overall accuracy of disability statistics has been the subject of significant debate due to unreliable, inconsistent and, at times, possibly biased measuring and reporting methods.3 Moreover, pervasive stigma and discrimination relating to persons with psychosocial disabilities in that state remain neglected by law and policy makers notwithstanding an urgent need to eliminate those prejudices and their consequences. Specifically, despite law and policy provisions that obligate South Africa to educate the public on psychosocial disabilities, and to undertake those education initiatives as part of a broader effort to prioritise mental health, no real progress has been made in the development and rollout of national awareness and stigma-reduction activities. As a consequence, mental health as a whole remains domestically de-prioritised and under-researched.

The article examines the need to address mental health stigma and its ramifications as human rights violations and public health challenges in the context of South Africa’s broader obligation to ensure the full realisation of the rights of persons with psychosocial disabilities. In doing so, we consider the state’s obligations under the Convention on the Rights of Persons with Disabilities (CRPD), and especially its domestic duties as encompassed in the Promotion of Equality and Prevention of Unfair Discrimination Act (PEPUDA),4 the Draft National Disability Rights Policy (NDRP),5 and the National Mental Health Policy and Strategic Framework 2013-2020 (NMHPF).6

We argue that addressing stigma is both a public health and a human rights concern that is inadequately accounted for in existing laws and policies. Although some South African laws and frameworks make mention of stigma and discrimination on the basis of psychosocial disability, or explicitly require the state to take steps to address this problem, existing protections nonetheless remain insufficient. To illustrate: the Mental Health Care Act7 lacks any positive obligation to foster inclusivity, while the provisions of PEPUDA, consciously designed to promote equality through public education,8 have yet to be activated. Lack of adequate resourcing and attendant capacity building, likewise, forms a significant impediment to meeting existing stigma reduction objectives, despite their inclusion in instruments such as the CRPD, NDRP and NMHPF. This demonstrated systemic failure to prioritise mental health in law and policy implementation amounts to stigma in its own right.

To comply with the CRPD as well as its own domestic legislation and policies, South Africa must undertake further actions. These can include high-level state intervention and inter-departmental co-ordination, adopting disability-specific legislation, and strengthening (while also making accountable) the South African Human Rights Commission (SAHRC) in its designated role as the state’s CRPD-compliant independent monitoring mechanism. Using lessons from the rest of Africa as well as further afield, we consider how these recommendations might be best implemented for the benefit of persons with psychosocial disabilities in South Africa. Throughout the article we advocate for an African perspective which recognises that specific needs exist for South African persons with psychosocial disabilities, and that any contextually-relevant interventions must take those needs into account by including the active participation and consultation of those individuals and their representative disabled peoples’ organisations (DPOs).9

2 Global, African and South African perspectives on Addressing Stigma

Stigma on the basis of psychosocial disability is a significant source of social marginalisation as well as a cruel and pervasive affront to human rights and individual dignity.10 This prejudice can dehumanise those affected and cast them as ineligible for fundamental rights,11 including rights of access to health care facilities that (ironically) can help ameliorate those very same stigmatised and impairing conditions.12 Discrimination can also play a role in perpetuating or causing ‘socially-induced stress’, at once a product and a recapitulation of the original structural and institutional biases that result in psychosocial impairments.13 In this sense, stigma and discrimination constitute a cyclical phenomenon, further alienating and oppressing those who have already been alienated and oppressed.

False attributions that consider psychosocial impairments as the product of witchcraft, supernatural possession or ‘feeble-mindedness’ have been demonstrated to be particularly significant impediments to accessing mental health care on the African continent.14 This barrier is exacerbated by negative attitudes among health care workers and a dearth of adequate treatment options, which in combination reinforce harmful stereotypes by leaving psychosocial disabilities untreated.15 In South Africa, much like the rest of the continent, the role of stigma as a rights violation and as an impediment to accessing responsive care continues to greatly impede individuals from seeking support, care or treatment.16 Similarly, a lack of adequate information and training on mental health issues causes some health care workers to feel unable or unwilling to render services to persons living with psychosocial disabilities.17 The result is that psychosocial disabilities often go untreated, that communities exclude people who could live fulfilling and productive lives in those communities, and that mental health continues to suffer a ‘lack of ownership’ as a policy priority.18

Stigma also hinders progress toward developing laws and policies relating to mental health in African countries, including South Africa.19 Thus, although Ghana enacted mental health legislation, and South Africa promulgated the NMHPF, the lack of implementation of the respective statutes continues to bar progress in each of these countries.20 Ghana, for example, despite the promulgation of a national Mental Health Act in 2012, has yet to implement the law or prioritise mental health care in practice due to a lack of financial, human, and political resources.21 The next part considers incumbent obligations by South Africa to ensure that stigma is addressed.

3 South Africa’s obligations to address stigma

South Africa ratified the CRPD in 2007.22 Further to the Constitution of the Republic of South Africa,23 the act of ratification bound the state to honour the treaty’s mandates. Amongst these obligations are requirements enumerated in article 8(1) that states break down stigma and positively educate their populations on issues relating to disability.24 This legal duty is worth citing in full. States are charged:

a. To raise awareness throughout society, including at the family level, regarding persons with disabilities, and to foster respect for the rights and dignity of persons with disabilities;

b. To combat stereotypes, prejudices and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life;

c. To promote awareness of the capabilities and contributions of persons with disabilities.

The responsibilities in article 8 have a direct bearing on all obligations arising under the CRPD, because each of the treaty’s provisions must be read horizontally and holistically, including the non-discrimination and equality provisions (article 5).25 Obviously connected duties relating to individual articles include equal access to health (article 25); provisions which guarantee the right to education (article 24) and to work (article 27); and the mandate for inclusion in the community (article 19). Put another way, countering the impact of stigma makes it vitally easier for people with psychosocial disabilities to seek care, attend school and university, pursue employment that is fair and dignified, and live where and with whom they wish.26 Hence, numerous intersecting rationales support states alleviating stigma and discrimination, and restoring the dignity and fundamental freedoms of persons with psychosocial disabilities.

In domestic South African law, section 10 of the Mental Health Care Act prohibits discrimination on the basis of mental health status, but imposes no penalties for its violation. nor does it incorporate positive duties and, instead, focuses largely on issues of legal capacity and institutionalisation.27 Nevertheless, these elements of mental health law have a substantial role to play in improving the quality of life of persons with psychosocial disabilities. Indeed, in De Vos,28 the Constitutional Court of South Africa characterised provisions allowing for the imprisonment of people with psychosocial disabilities prior to trial in terms reminiscent of ‘socially-induced stress’,29 namely, that the practice ‘reinforces the stigma and marginalisation that people [living with psychosocial disabilities] are subjected to on a routine basis’.30 Arguably, the same is true of involuntary institutionalisation which, while the subject of some necessary debate,31 has the potential to be routinely abused as well as abusive, thereby causing great harm, including unnecessary stigmatisation, in the process.32

Similarly, as demonstrated in Purohit & Another v The Gambia,33 the sole disability-related decision rendered by the African Commission for Human and Peoples’ Rights (African Commission), respect for the freedom of movement and association of people with psychosocial disabilities constituted a central component of the right to be free from discrimination itself. The Commission recognised that the right to appeal involuntary detention was essential for the assurance of the dignity of persons with psychosocial disabilities, while also asserting that laws which inadequately protected the rights of these persons constituted a failure to recognise their special needs and, therefore, amounted to discrimination.34

3.1 Incorporating a positive obligation

Purohit likewise elaborated on the need for positive measures to integrate persons with psychosocial disabilities into society. The African Commission required The Gambia to ensure appropriate steps for inclusivity through law and policy designed to address discrimination and, in the process, advance associated rights such as the right to ‘a decent life, as normal and full as possible’.35 Trenchantly, Purohit asserted the value of the right to health and required that its realisation be advanced positively

without ‘discrimination of any kind’.36 The decision, therefore, underscores the need for disability to be de-stigmatised in all spheres if discrimination is to be fully alleviated at individual, community, institutional and social levels. It also implies a positive and active state duty to seek a means of promoting inclusivity, whether in advancing the right to health care or in seeking to ensure access to the full spectrum of rights.37

Aside from the Mental Health Care Act, no other form of disability-related legislation currently exists in South Africa. PEPUDA places a positive obligation on the state to promote the right to equality, including non-discrimination, on the basis of disability. Section 25(1)(a) of PEPUDA requires the state to ‘develop awareness of fundamental rights’ through, among other means, public information campaigns. Therefore, a significant obligation exists in respect of the promotion of the right to equality in South Africa, including through awareness raising and information dissemination. Yet this provision, along with the entire chapter of PEPUDA that deals with the promotion of the right to equality, remains in abeyance awaiting the signature into law of the President of South Africa, a situation that has persisted for over 17 years.38

It is worth noting that two recent policy instruments have demonstrated a commitment to a rights-based approach to psychosocial disability and have included stigma reduction as part of these schemes. These policies, which emanated from different departments, are the National Disability Rights Policy (also known as the White Paper on the Rights of Persons with Disabilities), championed by a Directorate of the Department of Social Development (formerly the Department of Women, Children and People with Disabilities), which was approved in December 2015;39 and the National Mental Health Policy and Strategic Framework 2013-2020, which is a product of the National Department of Health.40 These are certainly important steps forward in the advancement of the rights of persons with psychosocial disabilities. Yet, as explored in the next section, notwithstanding considerable commitments on paper, the actual implementation of stigma reduction and public education initiatives have been less forthcoming.

4 Failure to address stigma

In 2013, South Africa issued its first progress report on the state’s compliance with the provisions of the CRPD. The report noted in relation to article 8 that, despite awareness regarding the rights of disabled persons occupying a place of prominence in the state agenda, ‘weaknesses in co-ordination, implementation and monitoring and evaluation have largely detracted from its effectiveness and impact’.41 This is a grim self-indictment of the inability of the South African government to mobilise resources and political will to support the rights of persons with disabilities. Two years later, South Africa’s first periodic country report to the Committee on the Rights of Persons with Disabilities (the treaty body tasked with oversight of the CRPD) outlined a handful of activities aimed exclusively at officials in government departments as evidence of progress towards meeting the objectives of article 8.42 Such an approach belies the fact that the CRPD requires a much broader and societal approach to raising awareness and reducing stigma, and demonstrates that the country is failing to meet these obligations.

That South Africa has made numerous commitments to the reduction of stigma on the basis of psychosocial disability is indeed noteworthy. Yet, the lack of sound implementation and appropriate resourcing for such initiatives is amply borne out by the meagre advances reported in the country’s CRPD report. Among the challenges identified in meeting this need is the lack of available resources to ensure sound implementation. Research conducted in 2009 assessed that ‘there are not currently resources available for education to reduce stigma’.43 Six years later, Marais and Petersen examined the extent of the country’s implementation of the NMHPF, and found that resource allocation remained a challenge. Also contributing to administrative malaise was a lack of political impetus:

The mental health policy framework does not provide sufficient guidance on how stigma should be addressed, with provincial and district level respondents not being aware of any specific anti-stigma programmes for mental health and variations between provinces in terms of prioritising addressing stigma. 44

The lack of political knowledge, will or co-ordination that these authors refer to as stumbling blocks translates directly into an absence of political impetus to destigmatise mental health, regardless of the formal legal obligations and policy commitments to do so. While the promulgation of both the NDRP and the NMFPH illustrates that there is nominal political will to ensure that the rights of people living with psychosocial disabilities are advanced, this has not translated into the actual implementation of stigma reduction activities. Put another way, ‘mental health is a priority on paper but not in practice’.45 This failure speaks to a broader neglect - and essentially stigmatisation of its own kind - of psychosocial disability as an area for legal, political and administrative action, as illustrated further below.

5 Realising the obligation to address stigma

Notwithstanding public political commitments by South Africa to ameliorate stigma arising from psychosocial disability, a considerable and glaring gap exists as far as implementation is concerned. Ultimately, weak rights enforcement is not isolated to stigma reduction since mental health more generally remains a neglected issue country-wide, remaining ‘low on the public sector agenda’.46 Experts thus point to the entrenched stigmatisation of psychosocial disability as a primary ‘excuse for inaction’,47 and among ‘the chief obstacles’ to improving mental health care.48

The marginalisation of mental health as a public health or human rights concern is well illustrated by the fact that less than 5 per cent of South Africa’s health budget is expended on assisting people with mental health needs.49 In comparison with countries such as Zambia and Uganda, where less than 1 per cent of national budgets are expended on mental health, this proportion seems relatively generous. Nonetheless, the figure illustrates a very telling point about an urgent need for parity if care provision is to match the burden of disease relating to mental health.50 Purohit may be instructive in this regard as well, with the African Commission encouraging states parties to the African Charter on Human and Peoples’ Rights (African Charter) ‘to take concrete and targeted steps, while taking full advantage of its available resources, to ensure that the right to health is fully realised in all its aspects without discrimination of any kind’.51 Commentators interpret this to mean that mental health should comprise a significant proportion of the health budget, and that the failure to do so constitutes discrimination against those affected by psychosocial disability.52

Indeed, the under-prioritisation of mental health in South Africa is a pervasive problem, as evidenced by the lack of reliable data. This problem has more recently proven to be deadly. Between March and December 2016, 94 psychiatric patients died after having been removed from institutionalised care and placed in unlicensed community settings which were found by the South African health Ombud to be ‘unstructured, unpredictable and sub-standard’ in what came to be known as the Gauteng Mental Health Marathon Project (GMHMP).53 These transfers occurred after subsidies for institutionalisation had been cancelled due to an apparent lack of funds54 and because of ‘selective interpretation’ of the NMHPF55 which, in an effort to comply with article 19’s enshrinement of the right to live in the community, calls for a systematic process of de-institutionalisation.56 Instead, what occurred was a ‘chaotic’ process of transferring patients to under-resourced facilities with untrained staff.57 This is clearly contrary to the state’s obligations in terms of the CRPD, and calls into question not only the commitment of the South African government to address stigma and foster awareness of mental health in society, but more pointedly the commitment to recognise and prioritise mental health needs altogether.

The next part considers some potential formal and institutional remedies that can have the effect of addressing what amount to gross failures on the part of the state to meet its obligations.

6 Addressing South Africa’s failure to meet its commitments

The CRPD, PEPUDA, NDRP and NMHPF evidence South Africa’s binding legal obligations for reducing stigma towards and promoting the rights of individuals with psychosocial disabilities. The state has also made various other commitments through which it has expressed its intention to meet these obligations. Therefore, it would be incumbent upon the South African government to consider the numerous challenges already identified and how these may be engaged with and alleviated. The following is an exploration of the mechanisms through which the advancement of public education and reduction of stigma relating to psychosocial disability might be accomplished.

6.1 Emphasising mental health in policy and budgeting

Although we emphasise the significance of stigma reduction in relation to psychosocial disability, a broader issue that should also be addressed is the neglect of mental health as a public health concern. These challenges form part of the same larger and more systemic problem,58 with social attitudes and public health policies coalescing to marginalise persons with psychosocial disabilities in numerous intersecting ways.59 For instance, stigma obstructs the rehabilitation of individuals with psychosocial disabilities through de-prioritisation or a lack of co-ordination. Half of all African countries remain without a mental health policy, signalling that psychosocial impairment is a marginalised area of concern across the continent.60 Similarly, the formulation of policies that subsequently remain unimplemented represents another form of de-prioritisation. It should, therefore, be noted that, while addressing stigma in public arenas requires one form of intervention, the prioritisation of mental health can in itself serve to alleviate stigma and, therefore, must be considered in the policy process alongside awareness-raising initiatives.

Emphasising mental health as an area of policy priority will require questioning the ‘lack of ownership’ identified by scholars61 and ensuring that this is addressed through the clear designation of officials whose mandate is the promotion of mental health in their respective policy agendas. This is particularly important for South Africa in the Departments of Health, Finance and Social Development, where issues of resourcing and budget constraints have been identified as impediments. Ensuring that mental health is advocated for within these institutional structures can significantly alter this situation, with a stronger emphasis being placed on the needs of those with psychosocial disabilities as a matter of regularity in all aspects of governance.

The continued neglect of mental health as a concern evidences stigma across institutions, and can be alleviated through the appointment of a task force advocating its prioritisation in government departments while centrally co-ordinating these efforts. This can have the effect of ensuring that mental health is given the necessary priority and also that psychosocial disability is made visible - is understood and demystified. Visibility, in turn, can have a significant impact in improving awareness,62 whether at the level of local communities and health establishments or, indeed, nationally, including amongst law makers themselves.

Inter-departmental co-ordination and the dovetailing of activities undertaken by the Departments of Health, Finance and Social Development can significantly advance what amounts to a common goal across ministries. Recognising that these departments place a significant emphasis on the advancement of the rights of persons with psychosocial disabilities, it seems reasonable to suggest that an inter-ministerial mechanism be implemented to harmonise unenforced schemes currently contained in NDRP and NMHPF. Considering that one of the barriers to addressing stigma has been identified as the insufficient allocation of resources,63 avoiding duplication and resource pooling can significantly aid in the achievement of outcomes that advance both public health aspirations and disability rights objectives. Such a mechanism, therefore, requires high-level engagement in its composition. Clearly, the participation and input of other ministries, such as the Department of Justice and Correctional Services, the Department of Basic Education and others, is likewise needed.

6.1.1 Disability rights legislation concordant with the CRPD

Cabinet approval of the NDRP signals a significant shift in the desire to see the rights of persons with psychosocial disabilities realised. Still, the passage from White Paper status to the formulation of a Bill, and eventually a National Disability Rights Act, has significant advantages. Flynn, for example, notes that an impediment to the advancement of the rights of persons with disabilities in South Africa through policy has been the lack of enforcement and accountability mechanisms, which may be legislated for.64 Similarly, Byrnes suggests that the provisions of the CRPD require specific legislation in order to meet the need for harmonisation of national laws with the Convention because of the numerous areas covered, ranging from issues of legal capacity to child protection and the prohibition of torture. As such, he suggests, the mere inclusion of a non-discrimination

provision or ‘reading in’ of disability into existing instruments, such as the Mental Health Care Act, is not likely to be sufficient.65 Instead, an approach which addresses all disabilities in a manner that recognises the scale and the range of challenges faced would be preferable.

With regard to stigma reduction, an important advantage of legislation is the legal obligation placed on the state to promote the rights of persons with psychosocial disabilities. This is particularly important because of the fact that the promotional mandate incorporated in PEPUDA remains inactive. Such apathy has contributed to a lack of accountability on the part of the South African government to rigorously and diligently undertake initiatives aimed at the promotion of the right to equality.66 While it is clear that there may be some need for greater elucidation of the relationship between proposed legislation and PEPUDA, there has been no indication that the latter will reach the stage of implementation. Further, the recent introduction of seemingly parallel pieces of legislation, such as the Women’s Empowerment and Gender Equality Bill,67 suggests that the political will to see Chapter 5 reach fruition may be lacking.

However, perhaps more importantly, articles 4(1)(a)-(e) of the CRPD recognises the need for harmonisation and appropriate auditing of existing legislative mechanisms in order to identify what gaps exist in the current legal framework and how the state may go about rectifying them.68 The Department of Social Development has already embarked upon such a review, although the outcome is as yet unclear.69 A comprehensive process that considers what specific needs exist and how legislation can best aid in the advancement of fundamental rights is a necessary first step. However, it must be followed by the development of legislation which places a specific emphasis on the obligation of the state to address stigma on the basis of psychosocial disability through, among other means, rights promotion, awareness raising and inter-departmental co-ordination.

Few states explicitly set forth measures to be undertaken to reduce stigma and promote the rights of persons with disabilities in their domestic legislation. Malaysia’s Persons with Disabilities Act of 2008, and Bangladesh’s Rights and Protection of Persons with Disabilities Act of 2013, however, provide useful guidance in respect of addressing stigma through legislative mechanisms. Each of these laws uses national and district co-ordination committees to advise relevant government structures and to engage in awareness raising and information dissemination.70 Such a model provides avenues for participation and oversight by persons with disabilities, while maintaining governmental implementation and resourcing obligations.

Even so, further concretising legislation can significantly enhance impact through, for example, the establishment of a stigma-reduction working group made up of public education experts who can report back on an annual basis to the Parliamentary Portfolio Committee on Women, Children and People with Disabilities. Such an approach has an added advantage of creating permanent structures with the dedicated purpose of advancing promotional objectives. Nor must such an approach be limited to the proposed legislation. It could draw upon the work of the NMHPF, to name an example, in ensuring that CRPD-guided and informed work is accurately motivated, implemented and monitored. Legislation and policy can be periodically evaluated for concordance with the CRPD, utilising a human rights assessment to examine mental health frameworks in Africa. Because currently no country on the continent (or indeed, the globe) is as yet fully compliant with the provisions of the CRPD, continuous examination can significantly aid in moving progress on this challenge. 71

6.2 Research and capacity building

Stigma reduction is a relatively well-researched topic in the developed world, with numerous systematic studies illustrating that improving education, reducing social distance and intelligently targeting key stakeholders (such as healthcare workers) can have significant benefits.72 Yet, similar research in the developing world has only recently emerged.73

The relative successes of the Time to Change campaign in the United Kingdom74 and Like Minds, Like Mine in New Zealand75 provide important guidance in respect of the deconstruction of negative and false attributions. They also point out the need for private sector co-operation and the use of a variety of avenues for stigma reduction, including creative arts productions and the introduction of ‘peer workers’.76

Nonetheless, importing programmes from the global north wholesale without an acknowledgment of resource differentials and the specific contextual factors that lead to stigma and discrimination in the African context is not an appropriate solution. More empirically-grounded research is needed on the manner in which stigma can be combated, particularly in South Africa, where historically there have been a number of short-lived interventions that were not replicated or evaluated for their efficacy.77 Similarly, awareness of mental health issues in many South African communities remains poor and requires targeted intervention aimed at literacy.78 International models, many of which have been long-lasting and have undergone evaluation for their efficacy, can certainly be of significant utility,79 but this must necessarily be accompanied by localised investigation.

Key obstacles to addressing public attitudes are the combined lack of evidence-based methods aimed at mitigating negative perceptions; an absence of capacity to carry out such initiatives once devised; and adequate policy co-ordination aimed at implementation.80 The South African government, therefore, must accurately capture the capacity needs associated with goals contained in the NDRP and NMHPF if these programmes are to bear fruit. Addressing skills shortages as well as capital needs is likely to be an important consideration in the translation of political rhetoric into changes in actual lived experiences. It also is important to note that a significant amount of expertise already exists in the form of South Africa’s DPOs and their umbrella body, the African Disability Forum, comprising DPOs from across the continent.81 The state, therefore, should ensure an approach that makes use of the expertise housed within these organisations to guide appropriate research functions and to inform the design and rollout of stigma-reducing activities.

South Africa’s State Institutions Supporting Democracy - commonly referred to as Chapter 9s, and including the SAHRC and the Commission for the Protection and Promotion of Cultural, Religious and Linguistic Communities - also have a particularly important role to play in the realisation of the rights of persons with psychosocial disabilities. In terms of the Constitution and its enabling legislation, the SAHRC bears a clear mandate to promote the advancement of human rights, including those related to the community of persons with disabilities.82 Therefore, it is incumbent upon the government of South Africa and the SAHRC itself to ensure that this promotional mandate is fully carried out in respect of the rights of persons with psychosocial disabilities as well.83

6.3 A (South) African perspective on stigma

As noted above, a considerable need exists for further investigation into stigma on the basis of psychosocial disability in South Africa and on the continent. This, in turn, requires that interventions, policies and laws must recognise the specific context in which they operate and seek to ensure relevance.84 In the context of evolving mental health law, policy and practice, ‘Africa presents particular challenges and opportunities’.85 Among the unique structural factors experienced by the region are the significant shortage of specialised mental health professionals and the fact that, with the possible exception of South Africa, the institutionalisation of persons with psychosocial disabilities has not been a common occurrence.

In 2014, persons with psychosocial disabilities, non-governmental organisations (NGOs), policy makers, academics, research funders and service providers from Eastern, Western, Southern and Northern Africa and further afield, adopted the Declaration on Mental Health in Africa (Africa Declaration), a framework that broadly defines an agenda for serving the needs and advancing the rights of persons with psychosocial disabilities throughout the continent.86 Sub-titled ‘Moving to implementation’, the pronouncement is worth quoting at length:

In communities in which persons with psychosocial disabilities live, and even in the health care system, the affected persons, their families, and caregivers are frequently stigmatised and experience social exclusion and discrimination; and it is often assumed that little can be done to address their circumstances. However, a growing body of scientific evidence shows that much can be done for treatment, at moderate additional costs, and with significant economic benefits to countries, while at the same time reducing suffering and improving, and often saving, the lives of those who are affected. 87

The Africa Declaration goes on to state that although challenging, the African health system may also present an opportunity for task, resource and knowledge sharing.88 Regional and national efforts aimed at addressing stigma on the basis of psychosocial disability and advancing the rights of disabled persons generally, therefore, will need to recognise the specific challenges and opportunities that their context presents.

Meanwhile, in February 2016, the African Commission adopted the Draft Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa (African Draft Disability Protocol).89 This instrument adds renewed impetus to efforts to ensure the mainstreaming of the rights of persons with disabilities into regional frameworks. It contains a specific non-discrimination provision, including what might be construed as a promotional mandate. Article 3, paragraph 3 of the African Draft Disability Protocol requires states parties to ‘take steps to ensure that specific measures, as appropriate, are provided to persons with disabilities in order to promote equality and eliminate discrimination’. Yet, the article does not actually require states parties to advance rights through educative mechanisms, thus not fully recognising the need for societal shifts rather than merely the introduction of ‘specific measures’. Therefore, it remains to be seen whether any explicit emphasis on the African context and the particular challenges faced by Africans with disabilities will be incorporated into the instrument. First published for comment in 2014,90 the Draft Disability Protocol has not yet been finalised and there have been criticisms regarding its lack of contextual relevance.91 The instrument has also been critiqued for its under-emphasis on psychosocial disabilities, a state which is hoped will be rectified as the final version nears completion, adoption and, most importantly, resource allocation.92

The marginalisation of psychosocial disability within continent-wide initiatives is also instructive for South Africa, where context-specific narratives and culturally-unique taboos likewise prevail. Despite the integration of a rights-based lens in the NDRP and NMHPF, an emphasis on specific sociocultural barriers to accessing care, and a focus on community and family-level stigma are not clearly captured. This is despite the fact that cultural, racial, gendered, ethnic, religious and traditional taboos play a significant part in the stigmatising process in South Africa.93 Both societal stigma and self-stigma are informed by the context in which they occur, and will require interventions that reflect these contextual concerns if they are to be effective.94 It, therefore, is imperative that a significant component of the research elaborated upon above considers the need for culturally-relevant methods of integrating persons with psychosocial disabilities and pay due mind to the specific opportunities characteristic of the African and South African context.95 Civil society and DPOs - including the South African Federation for Mental Health, MindFreedom South Africa and the Pan-African Network of People with Psychosocial Disabilities - will have a central role to play in this process, bringing with them knowledge of conditions that government may very well not be exposed to. Their contributions, which in any case are required by article 4(3) of the CRPD, should be valued and encouraged.96

6.4 Independent monitoring of implementation

A key innovation of the CRPD is its commitment to accountability and effective monitoring of outcomes through the inclusion of a provision in article 33(2) which requires the designation or strengthening of an independent monitoring mechanism (IMM).97 The IMM plays a significant role in ensuring that the rights of persons with disabilities are advanced by functioning as a comprehensive evaluator of laws and policies across government departments, and by assessing the societal impact of these schemes.98 A considerable role thus exists for IMMs in seeking to ensure that the provisions of the CRPD are adequately and diligently implemented. Article 33(3) further and explicitly requires that persons with disabilities are equal participants in the monitoring process and that the state ensures the input of civil society and DPOs in such a practice. While South Africa has committed to the implementation of article 33 in an effort to promote transparency and accountability, the formal designation or strengthening of an IMM has not yet materialised.99 This amounts to a failure on the part of the state to meet its obligations in terms of the CRPD and requires urgent rectification if South Africa is to be said to be meeting its responsibilities.100

With regard to stigma reduction and the broader prioritisation of mental health, the IMM can play a significant role, not least in examining barriers to the implementation of existing policy objectives and lacunae in law which continue to result in the marginalisation of persons with disabilities. Monitoring the rollout of awareness-raising campaigns, providing training to DPOs and self-advocates, and ensuring regular and accountable meetings of the task force proposed above could also be important functions for the IMM. This, of course, requires substantial commitment on the part of the state to ensure adequate resourcing and capacitation of the mechanism, whether it takes the form of being housed in an existing institution such as the SAHRC (as is the case with countries such as Germany and Denmark), or whether it results in a broader conglomeration of bodies under an umbrella mechanism co-ordinated as an IMM (akin to Austria’s Independent Monitoring Committee).101 In either instance, the significant upscaling of resources and technical expertise is needed for the IMM to be fit for purpose.

While these interventions are not the only actions needed to ensure that stigma relating to psychosocial disability is addressed in South Africa, they will go a long way in domesticating the provisions of international law into the country’s legal landscape and, in the process, ensuring that mental health receives the visibility necessary to be addressed comprehensively and consistently. The provisions of the CRPD suggest that these interventions are the minimum threshold required for South Africa to meet its obligations, rather than being the ‘ceiling’ for which the state must strive, meaning that the emphasis must also be placed on an approach that is sustainable and that will be augmented as needed.

7 Conclusion

A study of the effects of stigma and concomitant discrimination relating to psychosocial disability in South Africa noted two major effects on those affected, namely, ‘being unable to lead normal lives and a worsening state of health of the service user’.102 These outcomes violate human rights protections, are personally harmful, unnecessary and deeply troubling. They represent a failure to integrate people with psychosocial disabilities into broader South African society, and a clear failure to adequately protect persons with disabilities from discrimination and marginalisation as required by the CRPD.103 The South African government is aware of this situation, and appears at least nominally committed to its alleviation. This is significant, and the development of both the NDRP and NMHPF is an important development. Nevertheless, it is through implementation that their progress will be judged.

The Africa Declaration notes the ‘urgent need to address stigma, social exclusion and discrimination’ as crucial for contributing to quality of life improvements for persons with psychosocial disabilities; further, that the broad community of stakeholders ‘must play a major role in bringing about these positive changes’.104 This is indeed a very significant recognition in its own right. Crucially, however, it is accompanied by an important acknowledgment of the ‘urgent need for political vision, commitment, and leadership at the highest level to encourage national dialogue on mental health’.105 Governments should take the lead, while working with and supporting an inclusive, cross-sectoral, multi-stakeholder approach that can effectively engage with and remedy conditions and social circumstances that enable or reinforce stigma and discrimination against persons with psychosocial disabilities.

We echo the Africa Declaration’s call for commitment and action. This requires not only that government enact sound policies, following on the lead of the NDRP and NMHPF, but also strong and accountable institutions and adequately-resourced bureaucracies to carry them out. In the wake of the GMHMP, South Africa must commit never again to fail those living with psychosocial disabilities. Addressing stigma is one step it can and should take without delay.

 


1. WHO ‘Mental disorders affect one in four people’ http://www.who.int/whr/2001/media_centre/press_release/en/ (accessed 25 July 2017).

2. D Vigo et al ‘Estimating the true global burden of mental illness’ (2016) 3 Lancet Psychiatry 171-178.

3. K Foskett ‘Intellectual disability in South Africa’ (2014) http://www.includid.org.za/Downloads/South%20Africa%20and%20Intellectual%20Disability.pdf (accessed 25 July 2017).

4. Act 4 of 2000.

5. Draft National Disability Rights Policy, Government Gazette 38471, 16 February 2015.

6. Department of Health National mental health policy and strategic framework 2013-2020 (2013).

7. Act 17 of 2002.

8. Ch 5 of the Act relates to the promotion of equality through, among other means, public education.

9. JE Lord & MA Stein ‘Prospects and practices for CRPD implementation in Africa’ (2014) 1 African disability rights yearbook 97.

10. BD Robbins & HL Friedman ‘Social justice, human dignity and mental illness: A psychological perspective informed by personalist ethics’ in CV Johnson & HL Friedman (eds) The Praeger handbook of social justice and psychology (2014) 67 71-72.

11. A Dhanda & T Narayan ‘Mental health and human rights’ (2007) 370 Lancet 1197-1198.

12. S Cooper et al ‘Viewing Uganda’s mental health system through a human rights lens’ (2010) 22 International Review of Psychiatry 578 583.

13. C Nelson ‘Of egg shells and thin skulls: A consideration of racism-related mental illness impacting black women’ (2006) 29 International Journal of Law and Psychiatry 128.

14. B Saraceno et al ‘Barriers to improvement of mental health services in low-income and middle-income countries’ (2007) 370 Lancet 1164-1174.

15. P Bartlett et al ‘Mental health law in the community: Thinking about Africa’ (2011) 5 International Journal of Mental Health Systems 21 24.

16. CO Egbe et al ‘Psychiatric stigma and discrimination in South Africa: Perspectives from key stakeholders’ (2014) 14 BMC Psychiatry 191.

17. R Kakuma et al ‘Mental health stigma: What is being done to raise awareness and reduce stigma in South Africa?’ (2010)13 African Journal of Psychiatry 118-120.

18. AJ Flisher et al ‘Mental health policy development and implementation in four African countries’ (2007) 12 Journal of Health Psychology 505-516.

19. MA Omar et al ‘Mental health policy process: A comparative study of Ghana, South Africa, Uganda and Zambia (2010) 4 International Journal of Mental Health Systems 24.

20. GH Walker ‘Ghana Mental Health Act 846 of 2012: A qualitative study of the challenges and priorities for implementation’ (2015) 49 Ghana Medical Journal 266.

21. Walker (n 20 above) 272.

22. CRPD ‘List of ratifying states and regional integration organisations’ http://www.un.org/disabilities/convention/signature.shtml (accessed 25 July 2017).

23. Sec 231 Constitution of the Republic of South Africa, 1996.

24. P Bartlett ‘Stigma, human rights and the UN Convention on the Rights of Persons with Disabilities’ in W Gaebel et al (eds) The stigma of mental illness: End of the story? (2017) 209-226.

25. MA Stein ‘Disability human rights’ (2007) 95 California Law Review 75.

26. JK Burns ‘Mental health and inequity: A human rights approach to inequality, discrimination and mental disability’ (2013) 8 Health and Human Rights Journal 19.

27. Sec 10 Mental Health Care Act (n 7 above).

28. De Vos NO v Minister of Justice and Constitutional Development 2015 (9) BCLR 1026 (CC).

29. Nelson (n 13 above) 128.

30. De Vos (n 28 above) para 46.

31. MC Freeman et al ‘Reversing hard-won victories in the name of human rights: A critique of the General Comment on Article 12 of the UN Convention on the Rights of Persons with Disabilities’ (2015) 2 Lancet Psychiatry 844-850.

32. JE Lord & MA Stein ‘Contingent participation and coercive care: Feminist and communitarian theories consider disability and legal capacity’ in B McSherry & I Freckleton (eds) Coercive care: Law and policy (2013) 31.

33. (2003) AHRLR 96 (ACHPR 2003).

34. Purohit (n 33 above) paras 53-57.

35. Purohit para 61.

36. Purohit para 84.

37. Purohit paras 78-81.

38. South African Human Rights Commission Equality Round Table Report (2015).

39. Draft National Disability Rights Policy (n 5 above); Western Cape Association for Persons with Disabilities ‘Disability rights: A huge step forward’ http://www. wcapd.org.za/uncategorized/disability-rights-a-huge-step-forward/ (accessed 25 July 2017).

40. Department of Health (n 6 above).

41. Department of Women, Children and People with Disabilities, South Africa Baseline country report to the United Nations on the implementation of the Convention on the Rights of Persons with Disabilities (2013).

42. Department of Social Development First periodic country report on the United Nations Convention on the Rights of Persons with Disabilities (2015).

43. M van der Merwe ‘Psychiatry in distress: How far has South Africa progressed in supporting mental health?’ http://www.dailymaverick.co.za/article/2015-07-15-psychiatry-in-distress-how-far-has-south-africa-progressed-in-supporting-mental-health/#.WCkejdUrLIW (accessed 25 July 2017).

44. DL Marais & I Petersen ‘Health system governance to support integrated mental health care in South Africa: Challenges and opportunities’ (2015) 9 International Journal of Mental Health Systems 1-21.

45. Walker (n 20 above).

46. AA Herman et al ‘The South African stress and health (SASH) study: Twelve-month and lifetime prevalence of common mental disorders’ (2009) 99 South African Medical Journal 339.

47. United States Department of Health and Human Services Substance Abuse and Mental Health Services Administration Mental health: A report of the surgeon-general (1999) 3.

48. S Sturgeon ‘Stigma and marginalisation: Structural violence and the impact on mental health’ (2012) 48 Social Work 58 61 (citing Sartorius).

49. H Jack et al ‘Closing the mental health treatment gap in South Africa: A review of costs and cost-effectiveness’ (2014) 7 Global Health Action 10.

50. Omar et al (n 19 above) 26-28.

51. Purohit (n 33 above) para 84.

52. M Anyidoho ‘The right to health for mental health patients: African Commission’ (2004) 1 Housing and ESC Rights Quarterly 4.

53. Office of the Health Ombud The report into the circumstances surrounding the deaths of mentally-ill patients (2017).

54. M Raborife ‘Too many unanswered questions about Esidemeni 37’ http://www. news24.com/SouthAfrica/News/too-many-unanswered-questions-about-esidimeni-37-20161028 (accessed 25 July 2017).

55. Office of the Health Ombud (n 53 above) 1.

56. As above.

57. Office of the Health Ombud (n 53 above) 2.

58. United States Department of Health and Human Services (n 47 above); Omar et al (n 19 above); Walker (n 20 above).

59. PW Corrigan et al ‘Structural levels of mental illness stigma and discrimination’ (2004) 30 Schizophrenia Bulletin 481-491.

60. J Ssebunya et al ‘Developing a national mental health policy: A case study from Uganda’ (2012) 9 PLoS Med 10.

61. Flisher et al (n 18 above).

62. R Warner ‘Fields of intervention’ in Gaebel et al (n 24 above) 435-450.

63. Herman et al (n 46 above).

64. E Flynn From rhetoric to action: Implementing the UN Convention on the Rights of Persons with Disabilities (2011).

65. A Byrnes ‘Disability discrimination law and the Asian Pacific region. Paper for the UNESCAP, social development division for the Asia-Pacific region’ http://www.unescapsdd.org/files/documents/PUB_CRPD-Paper-III-Andrew-20110121.pdf (accessed 25 July 2017).

66. L Vetten ‘Submission to the Portfolio Committee on women, children and people with disabilities on the Women Empowerment and Gender Equality Bill [B50-2013]’ http://pmg-assets.s3-website-eu-west-1.amazonaws.com/submissionwegebillparliament.pdf (accessed 25 July 2017).

67. As above.

68. Byrnes (n 65 above).

69. Personal communication with official from the Department of Social Development, 26 November 2016.

70. Malaysia Persons with Disabilities Act, 2008; Bangladesh Rights and Protection of Persons with Disabilities Act, 2013.

71. N Drew et al ‘Mental health law in Africa: Analysis from a human rights perspective’ (2013) 12 Journal of Public Mental Health 10.

72. S Evans-Lacko et al ‘The state of the art in European research on reducing social exclusion and stigma related to mental health: A systematic mapping of the literature’ (2014) 29 European Psychiatry 382-389; D McDaid ‘Countering the stigmatisation and discrimination of people with mental health problems in Europe’ http://ec.europa.eu/health/archive/ph_determinants/life_style/mental/docs/stigma_paper_en.pdf (accessed 25 July 2017) 12-14.

73. A Alem et al ‘Community-based mental health care in Africa: Mental health workers’ views’ (2008) 7 World Psychiatry 54; N Monteiro et al ‘Policy perspectives and attitudes towards mental health treatment in rural Senegal’ (2014) 8 International Journal of Mental Health Systems 9; J Crabb et al ‘Attitudes towards mental illness in Malawi: A cross-sectional survey’ (2012) 12 BMC Public Health 541; A Kapungwe et al ‘Attitudes of primary health care providers towards people with mental illness: Evidence from two districts in Zambia’ (2011) 14 African Journal of Psychiatry 290.

74. C Henderson et al ‘The time to change programme to reduce stigma and discrimination and its wider context’ in Gaebel et al (n 24 above) 339-356.

75. R Cunningham et al ‘Like minds, like mine: Seventeen years of countering stigma and discrimination against people with experience of mental distress’ in Gaebel et al (n 24 above) 263-288.

76. Henderson et al (n 74 above); Cunningham et al (n 75 above).

77. Kakuma et al (n 17 above) 118-120.

78. Egbe et al (n 16 above).

79. H Stuart ‘What has proven effective in anti-stigma programming?’ in Gaebel et al (n 24 above) 497-514.

80. Marais & Petersen (n 37 above).

81. International Disability Alliance ‘African Disability Forum’ (2017) http://www. internationaldisabilityalliance.org/african-disability-forum (accessed 25 July 2017).

82. Sec 181 South African Constitution; South African Human Rights Commission Act 40 of 2013.

83. It is worth noting that an oversight function exists in relation to the SAHRC, whereby annual reporting to the Parliamentary Portfolio Committee on Justice and Correctional Services is required. Therefore, there is ample scope for ensuring that the SAHRC meets its promotional obligations and for holding the institution to account. To date, this has not been the case.

84. MA Stein & JE Lord ‘Forging effective international agreements: Lessons from the UN Convention on the Rights of Persons with Disabilities’ in J Heymann & A Cassola (eds) Making equal rights real: Taking effective action to overcome global challenges (2012) 27.

85. Bartlett (n 24 above) 21.

86. AS Daar et al ‘Declaration on mental health in Africa: Moving to implementation’ (2014) 7 Global Health Action 24589.

87. As above.

88. As above.

89. African Commission on Human and Peoples’ Rights ‘Draft Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa’ http://www.achpr.org/files/news/2016/04/d216/disability_protocol.pdf (accessed 25 July 2017).

90. L Nkatha Murungi & E Durojaye ‘The sexual and reproductive health rights of women with disabilities in Africa: Linkages between the CRPD and the African Women’s Protocol’ (2015) 3 African Disability Rights Yearbook 3-30.

91. Personal communication with official from the Department of Social Development, 4 February 2017.

92. As above.

93. CO Egbe ‘Experiences and effects of psychiatric stigma: Monologues of the stigmatisers and the stigmatised in an African setting’ (2015) 10 International Journal of Qualitative Studies on Health and Well-Being 27954.

94. As above.

95. Bartlett (n 24 above) 21.

96. It is noted, as an illustrative example, that advocacy and reporting on the GMHMP were due to efforts by the Pan-African Network of People with Psychosocial Disabilities after government, courts, parliament, and the SAHRC declined to act.

97. MA Stein & JE Lord ‘Monitoring the Committee on the Rights of Persons with Disabilities: Innovations, lost opportunities, and future potential’ (2010) 31 Human Rights Quarterly 689.

98. G de Beco ‘Article 33(2) of the UN Convention on the Rights of Persons with Disabilities: Another role for national human rights institutions?’ (2011) 29 Netherlands Quarterly of Human Rights 87.

99. Personal communication with official from the South African Human Rights Commission, 27 November 2016.

100. Because the SAHRC Act of 2013 incorporates a mandate to monitor South Africa's compliance with international instruments, the argument was made that there was not a need for formal designation but that there was still a need for strengthening as per the CRPD.

101. UNHCHR Study on the implementation of article 33 of the UN Convention on the Rights of Persons with Disabilities in Europe (2013).

102. Egbe et al (n 16 above) 6.

103. Arts 4(1)(a)-(e)CRPD.

104. Daar et al (n 86 above).

105. As above.

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