- Nkosana Maphosa
- Lecturer of Law, Great Zimbabwe University
- LLB (University of the Witwatersrand); LLM (Loyola University Chicago)
- CG Moyo
- Lecturer of Law, Great Zimbabwe University
- LLB; LLM (University of KwaZulu Natal)
- B Moyo
- LLD Candidate (University of Johannesburg). Lecturer of Law, Great Zimbabwe University
- LLB (University of Fort Hare); LLM (University of Pretoria)
- N Maphosa, CG Moyo & B Moyo ‘Left in the periphery: An analysis of voting rights for persons with disabilities in Zimbabwe’ (2019) 7 African Disability Rights Yearbook 112-139
- Download article in PDF file-pdf-o
In Zimbabwe, the right to vote is a constitutionally guaranteed right which can only be exercised by citizens who meet prescribed minimum requirements. Notwithstanding, the modalities meant to ensure that persons with disabilities participate in decision-making processes, usually through elections, are arguably inadequate. In the Zimbabwean context (and indeed in most African countries) the right to vote is underlined by a history of blatant racial exclusion and discrimination where the right was exclusively enjoyed by the white minority. Despite this regressive phenomenon; the 2013 constitutional dispensation makes a progressive clarion call for the inclusion of every citizen in the right to vote or to stand for public office, a move which underscores how a democratic society should function. Being a part of the international community, the country is also a signatory to international conventions such as the Convention on the Rights of Persons with Disabilities (CRPD), the International Covenant on Civil and Political Rights (ICCPR) and the Universal Declaration of Human Rights; all of which deeply entrench the right to universal and equal suffrage. Consequently, this article examines the right to vote of persons with disabilities from a human rights perspective converse to an arguably untenable welfare model. Therefore, the overarching intent of the article is to succinctly analyse laws and where relevant, policies which seek to promote the participation of persons with disabilities in elections; identify practical barriers and enablers that can engender the participation of persons with disabilities; assess approaches and interventions that have been employed in Zimbabwe to increase the participation of persons with disabilities in elections and interrogate the possible impact of the said interventions.
The World Health Organisation (WHO) and the World Bank opine that approximately 15 per cent of the global population lives with some form of disability.1 Historically, persons with disabilities have contended with challenges which have left them in the peripheries of society, removed from equal participation in more aspects than one.2 Atikson et al3 observed that women with disabilities constitute 60 per cent of persons with disabilities and their plight is even worse because of additional barriers resultant from their gender and disability.4 Therefore, for countries to truly display their democratic processes, all citizens including those living with disabilities must have equal access to the vote, stand for public office and participate in electoral processes as election officials or observers.5 The right to vote is an indispensable civil and political guarantee. It underlies an open, democratic and transformative society endeavoured in several legal and policy instruments. Practically speaking, this right is foundational in nature meaning its realisation is intrinsically linked to the enjoyment and attainment of other enshrined fundamental rights. Importantly, it creates a platform for persons to exercise free will, stand for political office and choose their political representatives. Moreover, it essentially allows people to determine the course of life they desire. In the Zimbabwean context (and indeed in most African countries) the right to vote is underlined by a history of blatant racial exclusion and discrimination where the right was exclusively enjoyed by the white minority. Consequently, most modern democracies have taken strides to ensure that people enjoy this crucial right, but challenges are still abound in so far as persons with disabilities are concerned.
Although the international legal framework seeks to ensure that persons with disabilities enjoy the same rights that able-bodied people enjoy, the reality is that they usually face social, legal and most importantly, practical barriers in claiming and fully enjoying their voting rights.6 Persons with disabilities more often than others encounter enormous discrimination and marginalisation. They have limited access to education, healthcare, and their participation in the economic and political dimension is minimal if not non-existent thereby making them vulnerable to poverty more than the able-bodied.7 Thus, to resolve this disparity the formulation of domestic legal and policy framework must comply with international standards, promote and protect the rights of persons with disabilities, and play a complementary role to societal behaviour change programmes which seek to alter perceptions of and/or about persons with disabilities.8
Additional barriers that hinder the equal participation of persons with disabilities in society include communication barriers, for deaf or dumb people and this significantly limits access to information. Physical barriers may limit access to buildings and in some cases, access to buildings where voting is taking place thereby depriving them of their right to cast votes for their preferred candidates for public office.9 Furthermore, attitudinal barriers which include stereotypes and stigma of persons with disabilities limit access to public life and may affect the confidence of those intending to stand for public office.10 In some African countries,11 communities believe that persons with physical or psychological disabilities are possessed by evil spirits or victims of witchcraft due to their ‘evil’ actions.12 As a result of this families of such persons may not register them as citizens or may limit their participation in social, economic and political processes thereby depriving them of the rights that able-bodied members of the society enjoy. 13
Against this background, this article considers the right to vote of persons with disabilities. As such, the overarching intent of the paper is to examine laws and policies which seek to promote the participation of persons with disabilities in elections; identify barriers and enablers of participation of persons with disabilities; assess approaches and interventions that have been employed in Zimbabwe to increase the participation of persons with disabilities in elections; and interrogate the possible impact of implemented interventions. Although several approaches will be discussed, a human-rights approach will be the premise for analysis of the domestic regulatory framework in assessing whether it complies with international standards for the treatment of persons with disabilities and ensuring that they are not excluded from political participation. The aftermath of the harmonised elections held in 2018 may set in motion electoral reforms as the country prepares for the 2023 elections. As such, the article illuminates gaps in legal and policy framework which significantly limits the equal participation of persons with disabilities in political life so that these can be remedied before the next election to achieve a truly democratic, just and egalitarian society.
Since Zimbabwe gained its independence from the clutches of its colonial masters in 1980, it has had four censuses. However, it is observed that from all four censuses, there are no official, reliable statistics on the prevalence of disability or the kinds of disability in the country.14 A study conducted in 2007 estimated that there are about 1.4 million people with at least one form of disability in Zimbabwe.15 In 2012, the Housing and Population Report recorded that the national disability prevalence stood at 2,9 per cent of which 55 per cent were women and 45 per cent were men.16 According to the recent Inter-censal Survey, disability prevalence stands at 9 per cent, with 10 per cent of persons with disabilities being women while their male counterparts constitute 8 per cent respectively.17 However, the credibility of these statistics is often questioned leading to assumptions that there might not be any reliable statistics on the prevalence of disability in Zimbabwe. 18
The contentious nature of the estimates on the prevalence of disability in Zimbabwe is partly attributable to the fact that there is no universally agreed upon definition of what constitutes a disability.19 This is demonstrated by the varieties of estimates that have been presented above. Nonetheless, the lack of a universally accepted definition of disability makes it difficult not to question the accuracy of the estimates on persons with disabilities. Peta and Moyo concur with our reasoning and importantly submit that ‘the conceptualization and definition of disability has been a complex, controversial, multidimensional and evolving issue dating back to the 17th century’.20 For example, one study could limit its scope to rural Zimbabwe and focus on physical disabilities only while another could focus on urban Zimbabwe and limit the scope to physical and mental disability. Both studies would present findings and statistics, but those would not provide a complete picture on the prevalence of disability. However, common forms of disability in Zimbabwe include physical impairments, mental impairments, hearing impairments, speech and functional disabilities, intellectual and sensory impairments.21 We subscribe to the definition of disability contained in the Convention on the Rights of Persons with Disabilities (CRPD), which unequivocally states that ‘[p]ersons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others’.22
Statistically at least, persons with disabilities constitute one of the most marginalised, socially excluded and poor groups.23 They are disadvantaged in every sense of the word. This is worsened by systemic attitudinal, deep-seated, institutional and environmental barriers and these militate against their ability or attempts to meaningfully participate in the social, economic and political facets of society.24 In most cases, it is assumed and expected that persons with disabilities are heavily dependent on their families to the extent that some are considered a burden to their caregivers. With current high levels of unemployment,25 many of those who live with disabilities tend to be perceived as an economic burden especially in rural areas because they are unable to contribute productively to the running of the homestead. These notions are prominent in rural areas where causes of disability are often associated with witchcraft or wrongdoing towards the ancestors. It is because of these perceptions that persons with disabilities are ostracised and in the case of women and girls; sexually violated and often without recourse.
In 2009, the Short-Term Emergency Recovery Programme (STERP) was launched by the government and this policy indirectly addressed disability through financial support to add onto the disability allowance.26 Furthermore, the Medium-Term Plan (MTP), Zimbabwe’s national economic and development strategy from 2011 to 2015 also provided for the issuing of grants to assist the upkeep of persons with disabilities. However, this national policy was limited in that it did not invest in the economic empowerment of persons with disabilities or provide initiatives for income generation. 27
The importance of the right to vote cannot be overemphasised regardless of whether one is a person with a disability or not.28 It is the choice of every citizen to choose whoever they want to represent their interests at all levels of government. Voting is essentially a manner in which an individual asserts his/her place in society.29 This is of significance to persons with disabilities because their interests are usually not represented adequately at a governmental level. When such a process is denied to an already disadvantaged group because of accessibility or practical challenges, the level of their expression and participation in society is also limited.
More recently, during the 2018 elections several attempts were made to include persons with disabilities in the political process. An example of such was the provision of disability-friendly electoral booths. This can be considered as a progressive step in relation to persons with disabilities’ right to vote. Furthermore, there was the assisted-voter programme which significantly enhanced the participation of persons with disabilities in the elections. Although due to these attempts, 55 000 voters were assisted in one way or another, some concerns were raised that the assisted-voter programme was a tool to intimidate voters into casting votes in a certain direction.30 These concerns are legitimate because we respect the sanctity of voting and once more than one person is in the booth, it degrades that sanctity and exposes the process of voting to abuse.
In as much as these attempts are a step in the right direction, it is important to note that not all disability is physical and that there are some forms of disability that can be included in the voting process without it being under the umbrella of assisted voting. In September 2017, Senator Nayamaybo Mashavakure, who was the representative for persons with disabilities, appealed to the Zimbabwe Electoral Commission (ZEC) to make use of sign language and braille voter education and polling material.31 However, this application was dismissed by the High Court in May 2018 and the reason was that there was no need for ZEC to print ballot papers in braille because the assisted-voter programme was already in place and was deemed adequate in the inclusion of persons with disabilities in the electoral process.32 This decision can be criticised because, as already mentioned, assisted voting is susceptible to abuse and if there are other alternatives, they must be explored. Moreover, the low level of inclusion of persons with disabilities is also demonstrated in the small number of those who contested for public office in the 2018 harmonised elections. Out of 23 presidential hopefuls, only one candidate, Elton Mangoma was a person with a disability.33
This is incongruent with recent efforts to build inclusive and just societies. For example, the last 40 years have been characterised by the emergence of advocacy groups particularly for the rights of persons with disabilities, both in developing and developed countries. Consequently, civil society organisations (CSOs) have been instrumental in this regard and as such constitute a critical component of the development and recognition of the rights of persons with disabilities. As such, the foundation of advocacy for civil society has been the migration from the perception of persons with disabilities from the health and charity approach to the human-rights approach.34 This approach ensures the equality and inclusion of persons with disabilities in social, economic and political aspects. The impact of the work of CSOs has been such that governments have had to re-evaluate their legislation and policy in the regulation of persons with disabilities.35 Furthermore, civil society has played a pivotal role in their work with bilateral and multilateral institutions in the development of policy and operational modalities which are enablers to the successful inclusion of persons with disabilities in all areas of life.
Legal and policy framework is the basis upon which we can determine if political processes, like the election of representatives for or standing for election for a public office, are inclusive of disability rights in a society and therefore democratic. The right to universal and equal suffrage is enshrined in inter alia, the Universal Declaration of Human Rights36 (UDHR); the International Covenant on Civil and Political Rights (ICCPR);37 and the CRPD. The CRPD is the first contemporary international legal instrument to depart from a health or charity-based approach to an inclusive, human-rights approach to disability. This methodology confers persons with disabilities with rights equal to their able-bodied counterparts, and this is embedded in their right to participate in the country’s political activities.38
Secondly, the UDHR was adopted in 1948 by the United Nations (UN) as the first non-binding international legal document which recognises inalienable rights of all human beings. Article 21 of the UDHR provides that ‘everyone has the right to take part in the government of his country, directly or through freely chosen representatives’.39 Although specific groups like persons with disabilities are not explicitly mentioned in the UDHR, the word ‘everyone’ in article 21 is read to be inclusive of every human being, regardless of whether they are able-bodied or not, rich or poor, educated or not. The UDHR therefore plays a pivotal role since it guarantees access to fundamental rights to all human beings.
The ICCPR adds with equal force that all people have a right to participate directly or indirectly in government and public affairs and this covers not only the election of representatives, but the right to stand for election for public office. However, like the UDHR, the ICCPR also does not explicitly refer to disability, but prohibits discrimination ‘... on any ground such as race, colour, sex ... or other status’.40 The words used in the ICCPR show that it does not provide a closed list of grounds upon which discrimination can be founded. With that said, a logical conclusion that can be drawn from it is that disability can be considered as another status to support a claim of unlawful discrimination under the ICCPR.
The CRPD contains comprehensive rights of persons with disabilities. It also codifies their invaluable voting rights. It adopts an expansive definition of disability which goes beyond physical to include sensory, intellectual and psychosocial disabilities. Article 6 of the CPRD importantly recognises the marginalisation of women with disabilities especially in political and public life. The fact that the CRPD has an estimated 90 per cent member state ratification demonstrates broad consensus on the rights enunciated in the Treaty.41 Article 29 of the CRPD recognises and protects the right of persons with disabilities to fully participate in political and public life, that is as voters or candidates. This provision upholds the right to take part in political life in broader terms including ‘participation in nongovernmental organisations and association concerned with the public and political life of the country’. 42
The CRPD also protects and promotes the right to equal recognition before the law, including legal capacity of persons with disabilities.43 In as much as most countries have ratified the CRPD; legal barriers to political participation remain for persons with one or more forms of disability for many countries. As a result, persons with disabilities tend to be dependents with minimal independence, regardless of their age, thereby side-lined from public life because of these legal barriers and stigma.44 This argument is best illustrated by the case below.
In Bujdosó v Hungary,45 six Hungarian nationals were placed under partial and general guardianship due to their intellectual disabilities and their names were also removed from the electoral register. This meant that they were unable to cast their vote in the parliamentary and municipal elections in 2010 and therefore disenfranchised.46 They took exception against this and contended that they were able to understand politics and were entitled at law to participate in elections regardless of their status.47 They also argued that the ban was unjustifiable under article 29 of the CRPD, when read conjunctively with article 12 of the same instrument. Their major submission was that the restriction was discriminatory as it was motivated by disability. Alternatively, the six were excluded ‘on the basis of a perceived or actual psychosocial or intellectual disability, including a restriction pursuant to an individualised assessment’. 48
The Committee on the Rights of Persons with Disabilities’ approach reiterates the view that people with intellectual disabilities are unable to participate in political discourse in most jurisdictions. The Committee has expressed its position regarding how the plight of people with intellectual disabilities was considered by most state parties to the CRPD. It has also demonstrated its apprehension of the exclusion of people with intellectual or psychosocial disabilities from voting49 and the exclusion of persons who are under some form of ‘guardianship’.50
It is clear from the above discussion that international law enjoins states to respect, protect and fulfil the rights of persons with disabilities. In the main, persons with disabilities have unequivocal rights to participate at all levels of political and public life especially when their interests are directly or indirectly involved. Therefore, states must refrain from any unjust limitation(s) or interference with access to political rights of persons with disabilities. States are also discouraged from enforcing discriminatory laws and instead are urged to adopt legal frameworks to enhance political participation of persons with disabilities. Therefore, since Zimbabwe is a signatory to the CRPD, it must align all domestic laws with this international standard to ensure that persons with disabilities are not left on the margins of society by safeguarding their voting rights.
In the regional context, the African Charter on Human and Peoples’ Rights [1981/1986] (ACHPR) is instructive on the matter. The ACHPR is a binding regional legal instrument adopted by the Organisation for African Unity (OAU) in Kenya51 on 27 June 1981. It entered into force on 21 October 1986. It is also known as the ‘Banjul Charter’. This instrument secures inalienable human and peoples’ rights and duties. For example, article 1 mandates states to ‘recognize the rights, duties and freedoms’ and enjoins them to ‘adopt legislative or other measures to give effect to them’.52 Article 2 confers these rights and freedoms to every individual regardless of ‘race, ethnic group, colour, sex, language, religion, political or any other opinion, natural and social origin, fortune, birth or other status’. This provision prohibits discrimination on the basis of listed grounds. Unlike section 56 of the Constitution its scope is broad because of the term ‘or other status’. As such, we also read in ‘disability’ under the ACHPR. Article 13 of the ACHPR states succinctly that:
Every citizen shall have the right to participate freely in the government of his country, either directly or through freely chosen representatives in accordance with the provisions of the law. 53
Article 13 of the ACHPR therefore is in tandem with the UDHR, ICCPR and CRPD since it encompasses political rights. Article 1954 also states with equal force and sagacity that all peoples shall be equal; they shall enjoy the same respect and shall have the same rights. Nothing shall justify the domination of a people by another’. The ACHPR importantly creates an enforcement mechanism through the establishment of the African Commission on Human and Peoples’ Rights (African Commission) to promote human and peoples’ rights and ensure their protection. 55
The African Charter on Democracy, Elections and Governance (2007/2012) (ACDEG) also provides guidance on the matter. The Democracy Charter or ACDEG was adopted in Ethiopia on 30 January 2007 and entered into force on 15 February 2012. It places emphasis on ‘good governance, popular participation, the rule of law and human rights’.56 Its objectives are captured in article 2 and include the holding of ‘regular free and fair elections to institutionalize legitimate authority of representative government as well as democratic change of governments’.57 Article 6 enjoins state parties to ‘ensure that citizens enjoy fundamental freedoms and human rights taking into account their universality, interdependence and indivisibility’. Article 8 requires states to ‘eliminate all forms of discrimination based on political opinion, gender, ethnic, religious and racial grounds as well as any other form of intolerance’.58 It also mandates countries to ‘adopt legislative and administrative measures to guarantee the rights of women, ethnic minorities, migrants, persons with disabilities, refugees and displaced persons, and other marginalized and vulnerable social groups’.59 As such, this peremptory obligation is in tandem with international standards discussed above.
Article 8(2) may be construed as imposing a positive obligation on states to initiate practicable measures in place to enable persons with disabilities to vote. The Democracy Charter’s choice of words is instructive. The use of the word ‘shall’ is indicative of a binding obligation. Article 10(3) like the ACHPR and section 56 of the Constitution enjoins states to ‘protect the right to equality before the law and equal protection by the law as a fundamental precondition for a just and democratic society’. Chapter 7 of the Charter contains substantial rules on democratic elections in Africa. Article 31 adds with equal force and mandates states to promote participation of social groups with special needs like people with disabilities in the governance process. Another positive addition is the Protocol to the African Charter on Human and Peoples’ Rights of Persons with Disabilities which concretises the rights of persons with disabilities in Africa.
Consequently, the international and regional orders envisage an egalitarian and just world, where everyone including persons with disabilities is endowed with rights to participate in political activities and therefore can vote. This recognition is infused with human-rights principles and must trickle down to change domestic regulatory frameworks which are still informed by a welfare approach. The above discussion also highlights that more must be done to guarantee and implement voting rights of persons with disabilities in Zimbabwe. The next section considers how national law purports to achieve this endeavour.
The previous section examined some background considerations and relevant international instruments on voting rights of persons with disabilities in Zimbabwe. It did so by inter alia, providing empirical evidence and a definition of disability. Resultantly, this part builds on and discusses national and regional perspectives on disability voting rights in Zimbabwe. It specifically seeks to answer the legal question whether or not voting rights of persons with disabilities60 are equally protected in our law. The article coincides in time with a new legal culture which breaks away from a bleak past to one based on justification61 and founding principles and values.62 It therefore examines the issue from the lens of the 2013 Constitution and appropriate electoral laws like Electoral Act (Chapter 2:3); the ACHPR; the ACDEG; the Southern Africa Development Community (SADC); Principles and Guidelines Governing Elections (SADC Principles); and the African Union Declaration on Principles on Principles Governing Democratic Elections in Africa 2002.63 The paper also considers disability laws like the Disabled Persons Act (DPA).64 We start this section by providing a crisp summary of challenges faced by persons with disabilities in elections.
Zimbabwe achieved a democratic milestone in 1980 when all eligible citizens cast their vote. This first historic universal election signalled a move towards good governance. However, the neo-colonial period is also characterised by contested political rights. Although our laws guarantee everyone the right to vote; persons with disabilities still encounter enormous electoral related challenges even in the post 2013 constitutional dispensation.
This regressive paradigm is captured by Munemo65 who records an avalanche of electoral hurdles. These include inter alia, lack of privacy in the voting process; being assisted to vote by total strangers; lack of braille ballots or enlarged print for easy reading; unavailability of magnifying material; inaccessible polling stations; being prevented from voting for different reasons; lack of information on the electoral procedures; lack of trained personnel to help people with visual impairment; lack of transport to polling stations; and fear of political violence on the part of the visually impaired. 66
The subject under review in this study has been considered by other researchers, but in a broader context.67 In the main, most empirical research findings in Zimbabwe record with concern that: ‘Access and inclusion of [persons] with disabilities in the electoral processes seems to be regarded as a charity issue rather than a human rights issue’.68 Consequently, this aspect of conventional wisdom is an affront to a potentially transformative polity and gives rise to vital questions. At the heart of the deliberation is the extent to which laws guarantee voting rights of persons with disabilities. In our considered view, the legal system in respect to the issue under review straddles between progression and regression. We note the general optimism encapsulated in the Constitution’s text, and scepticism that most (if not all) statutes passed before its adoption are misaligned with its imperatives. Resultantly, we survey these key instruments and thereafter discuss barriers persons with disabilities encounter at different stages of the election cycle.
The Constitution of Zimbabwe Amendment (No 20) Act, 201369 marks a significant shift from ‘welfare’ to ‘human rights based’ approach in the context of vulnerable and special-interest groups.70 Practically speaking, the scope of the 2013 Constitution as it relates to voting rights is more liberalised and improved compared to its predecessor, the 1979 Constitution. Moreover, the adoption of the Constitution embodies the country’s commitment towards obligations enshrined in the CRPD and it can be argued that this constitutional embodiment constitutes partial fulfilment of voting rights for the special groups under consideration in this article. We draw lessons from article 4(a) of the CRPD which mandates the adoption of appropriate legislative initiatives for the implementation of the rights recognised in the Convention. Moreover, article 4(b) of the CRPD requires states to take positive steps to reform existing laws that perpetuate discrimination against persons with disabilities. It enunciates the fundamental rights of ‘everyone’ including persons with disabilities.71 Notwithstanding this, the scope of the present article is limited only to constitutional provisions relating to voting rights of persons with disabilities. And in this regard it is essential to note that the Constitution is the supreme law of the land.72 In the main, section 2 of the Constitution aptly states that:
- This Constitution is the supreme law of Zimbabwe and any law, practice, custom or conduct inconsistent with it is invalid to the extent of the inconsistency.
- The obligations imposed by this Constitution are binding on every person, natural or juristic, including the State and all executive, legislative and judicial institutions and agencies of government at every level, and must be fulfilled by them.
Thus, by virtue of the operation of the provision cited above, all electoral laws, conduct and practices must comply with the indomitable law in the country. The justification for this is that the Constitution imposes a duty on the state and every person to respect, protect, promote and fulfil fundamental rights.73 As such, the Constitution has been hailed as progressive in the context of disability rights. This averment is supported by Manatsa74 whom after having conducted an extensive review of disability legislation called for its alignment with the Constitution. His study presents a compelling argument for a human rights-based approach to disability. In the main, Manatsa draws a comparison between the Lancaster House (1979) and 2013 Constitution and highlights weaknesses in the repealed Constitution. Several constitutional provisions can also be cited to reinforce the view that the new legal order calls for an inclusive, equal, just, free and fair society. These include the Preamble which unequivocally states in part, that:
Resolve by the tenets of this Constitution to commit ourselves to build a united, just and prosperous nation, founded on values of transparency, equality, freedom, fairness, honesty and the dignity of hard work.
Resultantly, it can be argued that the Preamble contains a remarkable constitutional vision. The elimination of all barriers for persons with disabilities to exercise their enshrined right to vote comports with this constitutional directive. Constitutionally speaking, persons with disabilities must generally be accorded all inalienable rights subject to justifiable and reasonable legal limitations. This logic justifies the need to take positive measures to ensure the realisation of rights. This comes after several researchers have revealed various challenges associated with the political rights persons with disabilities. Although cited briefly above they will be ventilated further below.
Cognisant of this, the Constitution enlists the welfare and rights of persons with disabilities as a national priority.75 For example, section 22(1) provides with force and brevity that:
- The State and all institutions and agencies of government at every level must recognize the rights of persons with physical or mental disabilities, in particular their right to be treated with respect and dignity.
- The State and all institutions and agencies of government at every level must, within limits of resources available to them, assist persons with physical or mental disabilities to achieve their full potential and to minimize the disadvantages suffered by them.
- In particular, the State and all institutions and agencies of government at every level must -
In the same spirit, the Constitution also enjoins the state to ‘promote and advance the use of all languages used in Zimbabwe, including sign language, and must create conditions for the development of those languages’.76 This provision is intrinsically connected to the right to vote because it makes it possible especially for visually-impaired citizens to get essential voting information and thus exercise their vote.
The Constitution contains an elaborate Declaration of Rights (DoR) and imposes a duty on ‘the state and every person, including juristic persons, and every institution and agency of the government at every level must protect, promote and fulfil the rights’ enshrined in the Constitution.77 Importantly, section 83 contains the ‘rights of persons with disabilities’ and they are progressively realisable.78 Unlike its predecessor that erroneously listed ‘physical disability’ as a ground for discrimination, the 2013 Constitution stipulates disability as an independent to found discrimination.79 This is in tandem with article 29 of the CRPD discussed above. The former position not only ignored other manifestations of disability, but was premised on an erroneous welfare model.80
Section 67 of the 2013 Constitution further stipulates that ‘every Zimbabwean citizen has the right to free, fair and regular elections for any elective public office established in terms of this Constitution or any other law’,81 and ‘to make political choices freely’.82 It is a constitutional requirement that elections must be ‘conducted by secret ballot’.83 The state is mandated to:
[T]ake all appropriate measures, including legislative measures, to ensure that all eligible citizens, that is to say the citizens qualified under the Fourth Schedule, are registered as voters; ensure that every citizen who is eligible to vote in an election or referendum has an opportunity to cast a vote, and must facilitate voting by persons with disabilities or special needs.84
Finally, the Constitution is the ‘ultimate’ law. Principally, it confers obligations on both natural and juristic persons. Its promulgation has opened a window of opportunity in the persons with disabilities realm since it recognises their voting rights. It marks a significant shift from a conservativist to a conventionally sound approach anchored on human rights and the rule of law. However, the discourse may appear utopian if key structural reforms are not adhered to. The subsequent section grapples with relevant statutes.
In our view, the language used in some constitutional provisions like section 83 falls short when pitted against conventional human-rights language. The manner in which it is couched exposes it to criticism that it does not create rights, but gives directives relating to be taken by relevant parties to meet the ‘needs of persons with disabilities’. As such, the Constitution must use appropriate language which reinforces voting rights of persons with disabilities. In its present state it fails to achieve the intended purpose of ensuring the enjoyment of equal voting rights.
The Disabled Persons Act is also couched in orthodox language. In our view, it falls squarely in the category of law which must be re-examined. The statute makes provision for the welfare and rehabilitation of disabled persons, provides for the appointment and functions of a Director of Disabled Persons’ Affairs85 and the establishment and functions of a National Disability Board.86 According to section 2 of the Act, ‘disabled person’ covers:
[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.87
The National Disability Board is endowed with expansive functions.88 They include amongst others, competence to develop policies and measures to adhere and give practical effect to international standards relating to the rights of persons with disabilities.89 We also take note of the need to ‘prevent discrimination against disabled persons resulting from or arising out of their disability’.90 Although the Act appears to be in sync with section 56 of the Constitution and international instruments, it is, however, embodied in an impugned statute. We say so because the Act promotes a welfare approach to disability rights. It must be overhauled or reformed to be in tandem with contemporary human rights-based approaches.
3.3 Electoral Act Chapter 2:1391
The Electoral Act fleshes out electoral law as informed by the Constitution. Section 3(b) of the Act confers citizens with several invaluable rights. It codifies international imperatives since it guarantees citizens’ political rights. It also importantly acknowledges the need to facilitate the right indiscriminately.92 This principle of democratic elections comports with section 56(3) of the Constitution which states that:
Every person has the right not to be treated in an unfairly discriminatory manner on such grounds as their nationality, race, colour, tribe, place of birth, ethic or social origin, language, class, religious belief, political affiliation, opinion, custom, culture, sex, gender, marital status, age, pregnancy, disability or economic or social status, whether they were born in or out of wedlock. (Our emphasis)
Section 57 of the Act regulates the manner of voting.93 Firstly, voting must be by ballot and must be conducted in a manner that is stipulated in the electoral law. Secondly, it must contain the names of the nominated candidates in alphabetical order. However, most persons with disabilities find it cumbersome if not impossible to cast their vote in the way prescribed in section 57(c)(i); (ii) and (iii) of the Act. On a positive note, the Act has created a window of opportunity for these to receive assistance from persons of their choice or those assigned to them by officials at the polling station. Moreover section 59 of the Act regulates voting by ‘illiterate or physically handicapped voters’.94 In our view, the impugned provision flouts international and constitutional standards discussed in this paper. Although this provision purports to guarantee the rights of persons with disabilities, it is couched on the language which falls short of constitutional requirements.
Section 59(1)(a) of the Act confers an illiterate or physically handicapped voter with a right to receive assistance from a person of their choice. This provision obliges the presiding officer to facilitate this arrangement. The voter may also be assisted by two electoral officers or employees of the ZEC and a member of the ZRP. There is no indication in the Act to suggest that the ‘helper’ must be a registered voter, but he or she must identify himself or herself to the presiding officer by producing proof of identity and complete requisite forms as prescribed in section 59(1)(b) of the Act. This person can only assist one voter. There is also guidance in the Act how the presiding officer can assist the voter.
Shall there and then mark the ballot paper in accordance with the voter’s wishes and place the ballot paper in the ballot box, and if the wishes of the voter as to manner in which the vote is to be marked on the ballot paper are not sufficiently clear to enable the vote to be so marked, the presiding officer may cause such questions to be put to the voter as in his or her opinion, are necessary to clarify the voter’s intentions.
Statutory protection is afforded to persons with disabilities in the context of voting. This purpose is achieved in several ways. Firstly, the Act restricts persons who should render assistance to persons with disabilities to those who were duly selected by the voter, following a laid-out procedure. From the wording of the statute this appears to be a peremptory obligation since negative wording is employed. The Act states in uncertain terms that:
No person other than the person selected by the voter in terms of subsection (1)(a) shall take part in assisting an illiterate or physically handicapped voter, and no person who is entitled to be in a polling station shall attempt to ascertain how the voter is voting.
The electoral law is clear in the case of visually-impaired voters where the presiding officer must ‘observe the casting of the vote in order to ensure that the voter’s intention is respected by the person assisting him or her’. In our view, by virtue of conferring a right to choose people who can assist them on voting day (to cast their vote) on persons with disabilities, the electoral law appears to be guaranteeing their rights as enjoined in the Constitution. Moreover, the law mandates the presiding officer to create a register of all voters with disabilities. In our considered view, this requirement is in tandem with the Constitution, but practically speaking a lot needs to be done as highlighted in this case study.
From an implementation perspective, the Act is also accompanied by subsidiary legislation.95 Read cumulatively with other electoral laws, they are also geared towards the promotion, protection and respect of voting rights of persons with disabilities in the country. In the main, we argue that although the Constitution and other statutes recognise the rights of persons with disabilities, a lot more can still be done to achieve legal dictates on disability rights in elections. Moreover, there are pertinent obligations placed on the ZEC and other stakeholders to make sure voting rights of persons with disabilities are attained. We emphatically reiterate the need to consider some of the issues discussed below.
Consequently, the legal issue for determination is whether or not the voting rights of persons with disabilities are equally protected in our law. The answer to this legal question is not clear-cut. As a preliminary point, we take into account a study conducted by Munemo which revealed that there were 700 000 potential voters with disabilities in 2008. It further recorded that only 25.6 per cent of persons with disabilities managed to vote that year with a staggering 75 per cent failing due to physical and infrastructural barriers.96 It also reveals that: 36.7 per cent of persons with disabilities were not registered on the voters’ roll; 16.5 per cent were unwilling to vote; 11.75 per cent were afraid of political violence; and 25.66 per cent filed electoral related complaints.97 According to Virendrakumar98 electoral barriers manifest themselves in three layers, but interrelated stages in the electoral cycle: a pre-election period; an election period; and a post-election period respectively.
The preliminary stage can also be regarded as a preparatory phase where ‘support for an accessible election’ is peremptory. Peculiar challenges that relate to it include: pre-election assessments that do not address election access issues; discriminatory election law; limited budgetary allocated for reasonable accommodations; inaccessible polling centres selected; poll workers not trained on administering the vote to persons with disabilities; difficulties in securing a national identification card; voter registration conducted in inaccessible locations; voter education and information on political party platforms or candidates not distributed in accessible formats; persons with disabilities note included as observers; and a lack of persons with disabilities’ experience in advocacy for voting rights.
Furthermore, persons with disabilities encounter enormous challenges during the election period. These range from electoral observers’ failure to monitor access issues; political parties failing to address issues important to voters with disabilities or recruit candidates with disabilities; party manifestos that are not in accessible formats; inaccessible polling stations; security forces not sensitised on how to provide a safe environment for voters with disabilities; media outlets failing to disseminate information in accessible formats; and an inaccessible complaints adjudication process.
The final stage in Virendrakumar’s conceptualisation is the post-electoral period. Challenges that have been identified encompass the fact that persons with disabilities are usually left out in the ‘lessons learned’ process; unfamiliarity with electoral rights; civic education that does not address the rights of persons with disabilities and is not distributed in accessible formats; and selection criteria for election commissioners that is not disability inclusive. Cognisant of these concerns, the Institute for Democracy and Electoral Assistance developed an election toolkit which contains guidelines to promote, protect, respect and fulfil voting rights of persons with disabilities. As such, electoral laws must be assessed taking into account legal questions below. 99
In Zimbabwe, the electoral law confers voting rights on persons with disabilities.100 As discussed above, these voting rights are legally actionable. Legally speaking, section 56 of the Constitution and the Electoral Act outlaws discrimination based on the ground of disability. In principle, this is in tandem with the international legal framework which saliently provides for equal rights and opportunities to vote for persons with disabilities, without any unreasonable restrictions. Conversely, as will be seen below, the right to vote is accompanied by a bundle of duties, which if unfulfilled renders it a futile academic exercise.
Moreover, the legal framework also facilitates voter registration for persons with disabilities as prescribed.101 The international order inductively calls on states to eliminate discrimination in electoral practices. Consequently, this legal imperative urges countries to ensure persons with disabilities’ access to national identification documents and that adequate infrastructure is availed. In Zimbabwe, the plight of persons with disabilities arguably reached zenith on the eve of the 2018 harmonised elections when the Zimbabwe Electoral Commission (ZEC) introduced the Biometric Voter Registration system. Although this novel registration model created positive opportunities in our electoral system, it has been acutely criticised by several stakeholders including civil society organisations (CSOs) and persons with disabilities respectively. The major premise lodged against it is that it violated the law since it failed to consider the special needs of persons with disabilities.
Another shortfall flowing from this dispensation relates to the legal provisions to safeguard the secrecy of the vote for persons with disabilities.102 The secrecy of the vote of this special group is controversial. In our view, there are two equally important considerations. Firstly, there is an acknowledgement at law that persons with disabilities must exercise their right to vote without coercion or undue influence. Secondly, some of them may face intractable barriers such that there is need for another person to assist them to exercise their right to vote. In the subsequent case, the extent of involvement of the aide becomes a crucial issue. In our country, the subject of voting aides has caused heated debates. Allegations range from the fact that the previous regime erroneously used members of the Zimbabwe Republic Police (ZRP), ZEC and agents to facilitate the voting process. The argument is made against ‘assisted voting’ in the context of persons with disabilities mainly that it may seriously jeopardise the secrecy of the vote. This premise is discussed further below.
The law also purports to realise the voting rights of persons with disabilities through provisions that require polling stations to be accessible to this group.103Although Zimbabwe has not yet domesticated the CRPD, its domestic laws still require polling stations to be accessible to persons with disabilities. In the preceding discourse, we discussed constitutional provisions and emphasised the need to align major disability laws with the Constitution which is the supreme law of the land. Practically speaking, these laws must be amended or repealed to infuse constitutional dictates. In the election’s context, there is need to require disability institutions to take certain steps and work collaboratively with the ZEC to facilitate access to polling stations. As the situation currently stands, this may be impossible due to the welfare innuendos imbedded in the impugned laws discussed in this article.
In principle persons with disabilities are also granted an equal right to stand for political office.104 We reiterate the point that equality is a cross-cutting theme in the legal architecture. Consequently, that is why the law imposes a duty on the state to eliminate discrimination in the ground of disability. Notwithstanding, persons with disabilities still find it difficult to stand for office because of barriers like limited infrastructure, violence and so on. The 2018 post-election violence evinces this point.
Whether or not there are measures to support elected officials with disabilities to effectively exercise their mandate is subject to debate.105 However, a holistic analysis of the Constitution and other statutes may support the view that elected officials with disabilities receive support to execute their mandate. However, there is a difference between what the law says and what happens in practice. The other issue relates to the question if persons with intellectual disabilities and those under guardianship are enfranchised.106 Equally so, the law also provides special measures for women with disabilities to exercise their electoral rights.107 The Electoral Amendment Act and Electoral Regulations make provision for special voting.
In our law, persons with disabilities have the inalienable right to freedom of association.108 The Constitution bestows this right on ‘everyone’. In the context of disability especially voting rights, it is important to enable persons with disabilities to associate freely, lobby and advocate for their right to vote. In practice, this has manifested itself through disability associations which usually play the role of watchdogs during elections.
Furthermore, the Electoral law provides general guidelines on civic and voter education. There are generic provisions prescribing civic and voter education, but not specifically concerning persons with disabilities.109 This issue is also controversial. Civic and voter education is regulated under the Electoral Act. A few days before the 2018 harmonised elections CSOs challenged certain sections of the Act since it barred them from sensitising the electorate. The Act does not prescribe civic and voter education concerning the right to vote. However, it has been done on an ad hoc basis. In our view, the issue of voter education is intrinsically linked to successful implementation of voting rights of persons with disabilities. Therefore, the country should act expeditiously to fulfil its legal obligations in this regard.
Our argument is buttressed by the fact that despite various interventions, persons with disabilities still encounter enormous challenges in exercising their voting rights. This observation was made by a representative of persons with disabilities in the Senate in Zimbabwe, as follows:
I have put it to ZEC that we need things like sign language, voter education material in braille and that registration centres be easily accessible. Even the tables need to be friendly to those who are physically challenged and the personnel who are conducting the registration process. [I] Personally can’t see and [I] would need an electronic system that tells me the information l have entered. 110
The averment is corroborated by others. One of them is Machakaire111 who posits that persons with disabilities firstly face the challenge that the electoral system/practices are flawed as this group relies heavily on others to exercise their vote. We argued above that the use of voting aides may affect the secrecy of the vote especially when members of the security services are involved. In our view, persons with disabilities should give free, prior and informed consent in relation to the parties who will assist them on Election Day. The author further argues that this is a cause for concern since there are almost 125 000 people in Zimbabwe who are blind.112 The second challenge he cites concerns voting booths that are not fit for purpose since they do not have ramps to enable access to people with wheel chairs.113 This claim is supported by Mbanje114 who argues with brevity that:
[V]oting rights for people living with disability continue to be trampled on as there are no measures and facilities to ease the voting process, a situation which has forced this group to get assistance from aides.115
According to other reports116 challenges facing persons with disabilities are deep-seated and generated controversy during the constitutional making process that led to the 2013 Constitution.117 For example, The Voice of America published an article in March 2013 where it alleged that some persons with disabilities lacked identity documents.118 If this averment is correct, it implies some citizens never participated in the referendum. Therefore, this proves as cogent the argument that voting rights of persons with disabilities still face enormous challenges in our jurisdiction.
Furthermore, the European Union Observer Mission Final Report on the Republic of Zimbabwe’s Harmonised Elections 2018119 has added to the list of challenges. In the main, it found that ‘persons with disability have reserved representation but further administrative reform could help improve their access to a secret ballot’.120
Another issue that the EU Observer’s Report raises involves Zimbabwe’s failure to align its domestic laws with the CRPD. This follows the country’s accession to this legal instrument in 2013. This subsequent claim confirms Manatsa’s findings that disability laws121 are misaligned with the new constitutional order. As already stated above, the argument is that these laws reflect welfare rather than a rights-based perspective as required by the Constitution. Although the Zimbabwe ZEC and the government argues that it is committed to upholding the Constitution and thus promoting disabilities rights, the EU found that braille ballot papers, tactile ballot guides or other assistive measures have never been provided for persons with visual and other impairments122 and there were difficulties in gaining access to some polling stations.
Another issue relating to voting rights of persons with disabilities which arose after the 2018 harmonised elections concerns the election of two members of Senate, one man and one woman, to represent persons with disabilities. The elections were conducted pursuant to Statutory Instrument 126 of 2018, the Electoral (Prescribed Associations and Institutions) Notice, 2018 which set out a list of institutions and private voluntary organisations which were entitled to participate in the electoral challenge. It was amended by Statutory Instrument 138A, the Electoral Notice which removed 18 duplications from the list. The European Union observed that a total of 170 delegates were invited to participate, of whom 134 were present on the day. There was some speculation that the lack of full participation may have been due to the violence, which had taken place in the City on 1 August.
It also noted that the franchise of this election does not extend to persons with disabilities, as only representations of prescribed bodies may nominate candidates and vote. This is therefore a source of grievance to some persons with disabilities, as the electorate for the two senatorial positions is very small. An argument is made that the election could be conducted in concert with the general harmonised elections with persons with disabilities all eligible to vote for their representative.123
We concur with the findings of the European Union’s Observer Report that Zimbabwe must incorporate the CRPD into domestic law.124 This must be done in accordance with the 2013 Constitution. This step will guarantee that voting rights of persons with disabilities are promoted and protected as peremptorily enjoined in article 1 of the CRPD.
Secondly, we acknowledge with concern the decision of the High Court in July 2018 where the court held that braille was impractical as levels of braille literacy are low amongst those with visual impairments.125 The court missed a brilliant opportunity to change the disability landscape in the country.
Furthermore, we argue that the High Court’s decision stunted legal precedent and should have followed the 2008 Supreme Court decision which struck down provisions of the Electoral Act which required that persons requiring assistance to cast their vote should be assisted by the Zimbabwe Republic Police (ZRP) officers and others on electoral duty, denying the voter any choice of assistance.126
Practically speaking, the legislature must amend disability laws to ensure their compliance with the Constitution. At the time of writing, we ascertained that the Attorney-General’s Office had produced a first draft of the Persons with Disabilities Bill which was submitted to the Ministry of Public Service, Labour and Social Welfare and relevant stakeholders. However, we do not anticipate a long wait before public release of the Bill since it should be approved by the Cabinet Committee on Legislation and then the Cabinet.
Moreover, the government of Zimbabwe should take practical measures to address all the barriers at different stages (pre-election period, election period and post-election period) of the election cycle, as discussed above. Firstly, the government and relevant stakeholders should address access-related issues, repeal discriminatory laws, ensure that financial resources are available to promote reasonable accommodation, train poll workers to administer the vote to persons with disabilities, facilitate access to identity documents, address issues related to voter education and include persons with disabilities as electoral observers.
Additionally, political parties should recruit persons with disabilities as candidates, ensure that manifestos are in accessible format, security forces must provide a safe environment for persons with disabilities and media outlets must provide information in accessible format and overall there must be an accessible adjudication process. Finally, persons with disabilities must be involved in the aftermath of the election.
In sum, Zimbabwe seeks to build an egalitarian and inclusive society as espoused in the 2013 Constitution. Although the Constitution’s text is infused with a transformative culture and underlined by a human rights-based approach to disability; the legal system (mostly implementing statutes) is still largely repugnant in that it promotes a welfare model. As such, our study concludes that persons with disabilities still continue to live in the periphery of society as their voting rights are unrealised. We surveyed the international and national legal framework and cited pressing barriers related to the issue under review. Realistically speaking, the article may create a platform for constructive debate and importantly legislative reforms in this realm as the country prepares for the next harmonised elections in 2023. The legislature appears to be heeding the call for legislative reform as it is in the process of drafting the Persons with Disabilities Bill 2019.127 Notwithstanding this, the authors are not privy to the contents of the Bill as it has not been released for public comment.
1. World Health Organisation and World Bank ‘World report on disability’ (2011) http://who.int/disabilities/world_report/2011/en/ (accessed 15 November 2019).
2. Global Initiative to Enfranchise People with Disabilities ‘The Bill of Electoral Rights for citizens with disabilities’ http://www.electionaccess.org/rs/Bill_English.htm (accessed 28 March 2019); International Foundation for Electoral Systems (IFES) ‘Accessible elections for persons with disabilities in five Southeast Asian countries’ (2013); ‘Equal opportunities for persons with disabilities’ http://www.election access.org (accessed 28 March 2019).
6. Disability Right Advocates (2013) ‘Blind and visually impaired face barriers in voting’ www.dralegal.org (accessed 15 November 2019).
9. Inclusion International ‘Inclusive civic engagement: An information toolkit for families and persons with intellectual disabilities’ (2015) http://electionaccess.org/en/media/news/39/ (accessed 15 November 2019.
10. Election Access (October 2016) ‘Political Participation of Persons with Disabilities in Remote and Rural Areas’ http://electionaccess.org/en/media/news/40/ (accessed 26 November 2019).
13. DL Cogburn ‘The grand challenge of disability and development in ASEAN’ in DL Cogburn & T Kempin Reuter (eds) Making disability rights real in Southeast Asia: Implementing the UN Convention on the Rights of Persons with Disabilities in ASEAN (2017).
25. Zimbabwe National Statistics Agency (n 17 above). See also ‘93,4 percent Zimbabweans are employed: ZIMSTAT’ The Zimbabwe Mail 27 May 2018 https://www.thezimbabwemail.com/business/934-percent-zimbabweans-are-employed-zimstat/ (accessed 15 November 2019). Nonetheless, the employment statistics which is estimated at between 5,18% and 90% are highly contested.
26. SA Nilsson ‘Disability rights in Zimbabwe’ http://www.msc.st/docs/HRBA-Disability-Zimbabwe-revised-2011-01-30.doc (accessed 26 November 2019).
52. The African Commission on Human and Peoples’ Rights considered art 1 of the ACHPR in several communications: Commission Nationale des Drois de l’ Homme et des Libertes v Chad Institute for Human Rights and Development in Africa v Angola (2000) AHRLR 66 (ACHPR 1995) para 20; International Pen and Others (on behalf of Saro-Wiwa) v Nigeria (2000) AHRLR 212 (ACHPR 1998); Jawara v The Gambia (2000) AHRLR 107 (ACHPR 2000) para 46 (holding that: ‘Article 1 gives the Charter the legally binding character always attributed too international treaties of this sort. Therefore, a violation of any provision of the Charter automatically means a violation of article 1. If a state party to the Charter fails to recognize the provisions of the same, there is no doubt that it is in violation of this article. Its violation, therefore, goes to the root of the Charter.’); Lawyers for Human Rights v Swaziland (2005) AHRLR 66 (ACHPR 2005); Zimbabwe Human Rights NGO Forum v Zimbabwe (2005) AHRLR 128 (ACHPR 2005) para 164, 215; Egyptian Initiative for Personal Rights and Interights v Egypt (2011) AHRLR 90 (ACHPR 2011).
53. Constitutional Rights Project v Nigeria (2000) AHRLR 227 (ACHPR 1999); Jawara (n 52 above); Lawyers for Human Rights v Swaziland (n 52 above); The Nubian Community in Kenya v Kenya Communication 317/06 (2015); Purohit v The Gambia (2003) AHRLR 96 (ACHPR 2003).
64. [Chapter 17: 01]. Other statutes like the Mental Health Act [Chapter 15:12]; War Victims Compensation Act [Chapter 11:16]; Criminal Law (Codification and Reform) Act [Chapter 9:23]; Social Welfare Assistance Act [Chapter 17:06]; and State Service (Disability Benefits) Act [Chapter 16:05] complete the disability framework, but they are not directly relevant to political rights.
65. ET Munemo ‘Enhancement of access and inclusion of people with visual impairments in the electoral process in Zimbabwe’ PhD Thesis, Zimbabwe Open University, 2015. See also B Virendrakumar et al ‘Disability-inclusive elections in Africa: A qualitative systematic review’ (August 2017).
67. E Sackey ‘Disability and political participation in Ghana: An alternative perspective’ (2014) 17 Scandinavian Journal of Disability Research 366; International Foundation for Electoral Systems Elections in Zimbabwe: Frequently asked questions (2013); Inclusive International CRPD compliance Analysis: Kenya. A country-level review of compliance with CRPD article 29 (2015); WA Oluchina ‘The right to political participation for people with disabilities in Africa’ (2015) 3 African Disability Rights Yearbook 309; J Fiala-Butora et al ‘The democratic life of the union: Toward equal voting participation for Europeans with disabilities’ (2014) 55 Harvard International Law Journal 71; J Ballington (ed) The implementation of quotas: African experience (2004) 125; CEDAW General Recommendation 23: Political and public life (1997) UN Doc A/52/38 para 5; M Schulze A handbook on the human rights of persons with disabilities: Understanding the UN Convention on the Rights of Persons with Disabilities (2009) 14; European Agency for Fundamental Rights ‘The right to political participation of persons with intellectual disabilities and with mental health problems in the European Union’ (2010) 15-21; MK Mbondenyi ‘The right to participate in the government of one’s country: An analysis of article 13 of the African Charter on Human and Peoples’ Rights in the light of Kenya’s 2007 political crisis’ (2009) 9 African Human Rights Law Journal 183; African Commission on Human and Peoples’ Rights ‘Working group on older persons and people with disabilities’ http://www.achpr.org/mechanisms/older-disabled/ (accessed 26 November 2019); H Combrinck ‘Everybody counts: The right to vote of persons with psychosocial disabilities in South Africa’ (2014) 2 African Disability Rights Yearbook 75.
74. P Manatsa ‘Are disability laws in Zimbabwe compatible with the provisions of the United Nations Convention on the Rights of Persons with Disabilities (CRPD)?’ (2015) 4 International Journal of Humanities and Social Science Invention 25.
78. Section 83 provides that: ‘The State must take appropriate measures, within the limits of the resources available to it, to ensure that persons with disabilities realize their full mental and physical potential, including measures-
89. Sec 5(b)(iii) of the Act. Note, however, that the Act uses the term ‘welfare and rehabilitation’ and is silent about fundamental rights and freedoms as has become a norm. It is our guided submission that this statute falls at the first hurdle when pitted against the spirit and objects of the 2013 Constitution (see secs 2, 3, 22, 44, 45, 46, 56, 83 and the whole of Chapter 4 for contextual construction). The new constitutional order envisages a transformational-egalitarian, just, tolerant and peaceful society. It peremptorily requires everything (laws, practices, conduct and custom) to comport to it without any condition whatsoever.
(b) in the absence of a person selected by the voter, assist the voter in exercising his or her vote in the presence of two other electoral officers or employees of the Commission and a police officer on duty.
(3) For the purposes of subsection (2)(b), every presiding officer shall keep a special register in which shall be recorded the name of every person whom the presiding officer permits to assist a voter in terms of subsection (1)(a), relevant particulars of the proof of identity produced by that person, and the name of the voter assisted by that person.
(4) A presiding officer permitted to assist a voter in terms of subsection (1)(b), together with the other persons there mentioned, shall there and then mark the ballot paper in accordance with the voter’s wishes and place the ballot paper in the ballot box, and if the wishes of the voter as to the manner in which the vote is to be marked on the ballot paper are not sufficiently clear to enable the vote to be so marked, the presiding officer may cause such questions to be put to the voter as in his or her opinion, are necessary to clarify the voter’s intentions.
(a) the person selected by the voter in terms of subsection (1)(a) shall take part in assisting an illiterate or physically handicapped voter, and no person who is entitled to be in a polling station shall attempt to ascertain how the voter is voting:
Provided that, in the case of a voter who is visually impaired, the presiding officer shall observe the casting of the vote in order to ensure that the voter’s intention is respected by the person assisting him or her;
110. ‘PLWDS raise concerns over 2018 vote’ Daily News 19 September 2017 https://www. dailynews.co.zw/articles/2017/09/19/plwds-raise-concerns-and-2018-vote (accessed 26 November 2013). See also the Zimbabwe Human Rights Commission www.zhrc.org.zw/your-rights/ (accessed 15 November 2019).
111. ‘Challenges facing voters with disabilities’ Daily News 27 May 2018 https://www. dailynews.co.zw/articles/2018/05/27/challenges-facing-voters-with-disabilties (accessed 26 November 2019).
114. ‘People living with disability demand full voting rights’ News Day 9 July 2018 https://www.newsday.co.zw/2018/07/people-living-disability-demand-full-voting-rights/ (accessed 15 November 2019).
116. See Voice of America ‘Zimbabweans living with disabilities lack identity documents: Won’t vote in referendum’ (5 March 2013) https://reliefweb.int/report/zimbabwe/zimbabweans-living-disabilities-lack-identity-documents-wont-vote-referendum (accessed 26 November 2019).
119. This report is available at http://www.veritaszim.net/sites/veritas_d/files/EU%20 Election%20Observers%20Final%20Report%20Zimbabwe%202018-.pdf (accessed 15 November 2019).
- Martin Musengi
- Jairos Jiri Centre for Special Needs Education, Robert Mugabe School of Education, Great Zimbabwe University, Masvingo, Zimbabwe
- M Musengi ‘The place of sign language in the inclusive education of deaf learners in Zimbabwe amid CRPD (mis)interpretation’ (2019) 7 African Disability Rights Yearbook 96-111
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This paper sets to explore how Zimbabwean law and policy relate to the CRPD in informing educational practice for learners who are deaf. The paper is an analytical discussion of the educational policy and practice issues related to the recent recognition of Zimbabwean Sign Language (ZSL) in a multicultural context where mother-tongue-based teaching is a right for meeting the inclusive education needs of all learners, including those who are deaf. It argues that one-size-fits-all, deficit interpretations of Zimbabwean inclusive education policies and law are in violation of the ‘sensory exception’ enshrined in the Salamanca Statement (UNESCO, 1994). These interpretations occur in the midst of major misinterpretations of the CRPD evident in General Comment 4. Misinterpretations of the CRPD affirm instances of local policy contradictions, inconsistencies and co-articulation as some policies are imbued with perceptions of deafness as a disability at the same time also having aspects that recognise deaf people as a linguistic minority. The deficit interpretations and inconsistencies in local policies occur despite constitutional provisions that recognise deaf learners’ right to a preferred sign language. Based on this case example of deaf learners, a general re-interpretation of the CRPD and a re-conceptualisation of inclusive education are recommended.
Persons with disabilities were historically viewed as welfare recipients. They are now generally recognised as having the right to education without discrimination and on the basis of equal opportunities. Various disability protocols such as the United Nations Convention on the Rights of Persons with Disabilities (CRPD) all reflect awareness of the right of persons with disabilities to education.1 It is, however, paradoxical that the growing awareness of this right appears to result in interpretations through policies and practices that discriminate against learners who are deaf and hard of hearing (hereafter ‘deaf learners’). Historically deaf learners were viewed as disabled, welfare recipients who were taught in separate special schools. Natural law interpretations of the right of persons with disabilities to education have perceived separate education as inherently discriminatory and have therefore advocated education in mainstream, ordinary schools alongside hearing peers. Education in mainstream, ordinary schools has been called ‘inclusive’. This article, however, argues that being deaf is morally a cultural difference requiring separate, special school provision in order to ensure access to a critical mass of sign language users and therefore to inclusive education. The article therefore proposes a separation thesis in which having a legal right to send learners who are deaf to a mainstream, ordinary school does not entail a moral right to do so.2 To advance this thesis, the article establishes the extent to which the CRPD, which is touted as the implementation vehicle for various disability protocols, can be interpreted to enable local legislation and policies for the inclusive education of deaf learners.3 This is done by analysing whether Zimbabwe’s legal and policy interpretations embrace the moral responsibility to ensure access to sign language and therefore to inclusive education by referencing the CRPD at a broader level. To provide context to this analysis, the article initially explores the condition of being deaf and the evolution of the education of deaf learners. It then discusses the development of these learners’ rights to communication in education in light of the CRPD before reviewing how legislation and policy documents regulating education and disability in Zimbabwe relate to the flawed interpretation in General Comment 4 (hereafter GC 4).
The condition of not hearing spoken language has traditionally been referred to as deafness. This condition is measured as hearing loss greater than 25 decibels.4 Every year more than 10 000 infants are born with such hearing loss in the United States.5 According to the Zimbabwean Ministry of Health, the prevalence of disabilities such as deafness is on the increase globally because of the rise in chronic health conditions.6 Incidence of disabilities such as deafness is reported to be higher in lower income than higher income countries, for example 90 per cent of children born with deafness are said to be from lower income countries.7 Zimbabwe is a low income country.8 In Zimbabwe, the government carried out a national disability survey which identified 22 500 people as having deafness and of these 7 500 were children of a school-going age.9 The prevalence of hearing loss in Zimbabwe is significant at 2,4 per cent of the population.10 There are no accurate figures on the prevalence of children who are deaf in Zimbabwe. The most recent Zimbabwe Persons with Disabilities Survey11 does not provide figures specific to deafness and organisations of people who are deaf provide widely varying estimates ranging from 80 000 to 1.5 million people with deafness in Zimbabwe.12 In light of the Ministry of Health’s reported global increase in the prevalence of disabilities, there is no reason to assume that the incidence of deafness is declining in Zimbabwe.
The descriptions in the preceding paragraphs are normative in that they are quite clear that hearing is the norm and deafness is a disability. This normative, pathological discourse is part of the medical perspective in which deafness is viewed as a condition that, like an illness, needs treatment either medically or through remedial education. In the medical perspective the characteristics of hearing groups are considered as mainstream and are given high-status. Remedial education therefore usually focuses on listening skills and articulation training in a curriculum that is delivered through a spoken language. This is done to deliberately assimilate deaf learners into a hearing norm as far as possible. In this discourse deaf learners do not receive an education that includes their own culture and history because their condition is devalued as a disability.
A growing body of literature in the social perspective counter-argues that being deaf is a condition that has for long been erroneously viewed as a deficiency or disability. The perspective argues that it is hearing society which disables those who are deaf by insisting on the superiority of sound-based, spoken languages at the expense of visual-gestural, signed languages. Belief in the supremacy of spoken languages results in discrimination which is referred to as ‘audism’. Proponents of the social perspective argue that it is progressive and more productive to view people who are deaf in terms of what they can do rather than what they cannot do. Deaf people can use sign languages for communication and therefore have a right to this language in education. They are only different from hearing people in that they use sign languages whereas hearing people use spoken languages. In that light, the perspective argues that the appropriate comparison group for people who are deaf are other linguistic minority groups rather than groups of people with disabilities. In Zimbabwe, the sign language of the deaf community is called Zimbabwean Sign Language (ZSL) and it is a language that is recognised in the 2013 Constitution as one of the 16 languages that should be used in education.
Three boarding institutions were established specifically for deaf children before independence in Zimbabwe. These are Emerald Hill School which was established in 1927, Henry Murray School which was established in 1947 and Jairos Jiri Naran School which was established in 1969. In these institutions, children underwent elementary education after which most of them were then taught practical skills such as basketry, woodwork, leatherwork, sewing and cookery.13 Historically in Zimbabwe, teaching such children was considered more of a charitable and religious obligation than a legal right, as churches and humanitarian organisations educated deaf children without national coordination and direction.14
After the attainment of independence in 1980, the government began to exert greater control over the education of deaf children and insisted on following the mainstream curriculum15 often in mainstream schools.16 Special units for deaf learners were opened at various mainstream schools. Despite government coordination and direction, deaf learners in Zimbabwe still typically do not go beyond primary school education. Their primary school education is usually longer than hearing peers and this longer stay in school is attributed to various factors. One of the prime factors is that in addition to learning the mainstream curriculum also followed by hearing pupils, the deaf pupils have other areas of need dictated by their deafness.17 These areas are specialist and technical-vocational skills aimed at preparing deaf pupils to earn a living and fit into society. The specialist areas in the curriculum have traditionally included articulation or speech training, lip or speech-reading and auditory training. This focus on deficiencies is not surprising since the development of communication rights which recognises the social perspective’s focus on ZSL is a relatively recent development.
The reality for deaf learners is that decisions regarding their education rest with specialists in the medical and educational fields. The focus is on specialists identifying individual weaknesses and trying to treat them and ‘normalise’ the deficient learner to facilitate entry into an ordinary school or classroom. This medical focus on remediating the individual initially resulted in the creation of separate special schools for the deaf. Globally, these special schools fell out of favour with some because their results were not good. It was suggested that since such separate education in special schools resulted in inferior education, it would be better to integrate the learners. The practice of integration of deaf learners became popular in the 1980s because it was argued that since the learners now had greater access to hearing models in mainstream schools, they could be remediated in special classes and integrated in mainstream classes for part of the day as appropriate. However, integrated education did not appear to be producing the desired result. There was therefore a paradigm shift from a medical perspective focus on trying to remediate individual learners within mainstream schools to a more social focus on dealing with barriers that all learners face in mainstream schools in order to improve educational outcomes. The social perspective birthed inclusive education as focus was now on making the environment accessible for all. From this social perspective, it was easy to make the jump to a rights-based model in which deaf learners were viewed as having rights to access the environment. It is therefore on the basis of social and rights models that inclusive education is properly grounded.
Sign language was added to the traditional curriculum through a government directive that it should be one of the languages to be taught in schools.18 Government followed this up with another directive Special examination arrangements for learners with disabilities which allowed the signed interpretations of examinations.19 In addition, to give legal force to the status of sign language, the current Constitution of Zimbabwe lists ZSL as one of the official languages in the country. Section 4 of Chapter 6 of the Constitution states that: ‘The State must promote and advance the use of all languages used in Zimbabwe, including Sign Language, and must create conditions for the development of those languages.’
These legal and policy instruments serve to recognise a language that emerged from bringing together deaf children in boarding special schools in the pre-independence era as the need for communicative interaction resulted in this visual-gestural language.20 It is a natural, manual language using hand-shapes, facial expressions and movement to convey messages as it is visually accessible to people who are deaf. It, however, has no orthography. In pre-independence times the language was not recognised as real and was therefore prohibited from use in schools as it was generally perceived as interfering with the acquisition of spoken languages which can be written. Internationally, deaf children are renowned for having displayed resilience over the years by using sign language underground, away from hearing teachers who prohibited it.21 It is this situation that the Zimbabwean government, informed by its egalitarian values of equal opportunity, sought to rectify by developing appropriate legal and policy instruments after independence in 1980.22 These legal and policy instruments were developed in the broader context of the CRPD.
The normative content of article 24 of the CRPD states that state parties must ensure the right of persons with disabilities to education through an inclusive-education system without discrimination and on equal terms with others at all levels. GC 4 appropriately explains this as meaning that inclusion is a process of systemic reform embodying changes and modifications in content, teaching methods, approaches, structures and strategies in education. In tandem with rights-based theory and practice of inclusive education, GC 4 aptly explains that these systemic reforms are meant to overcome barriers in order to provide all students of the relevant age range an equitable and participatory learning experience and environment that best corresponds to their requirements and preferences. Surprisingly, GC 4 abandons this social, rights-based focus on systemic reform and learner preferences in subsequent definitions and explanations of inclusive education.
Contrary to inclusion theory and practice which focuses on the learner’s experience,23 GC 4 misdirects itself by focusing on placement in mainstream schools as the default setting for inclusive education. The GC 4’s misdirected focus on placement is evident in their definition of segregation. It says segregation occurs when the education of students with disabilities is provided in separate environments designed or used to respond to a particular or various impairments, in isolation from students without disabilities (paragraph 11). Segregation is a concept that does not appear in the CRPD itself and is introduced by GC 4 to mean discrimination.24 This one-size-fits-all explanation is problematic as it assumes that whenever deaf learners are educated separately from hearing learners, they are being discriminated against. The explanation negates the normative content of article 24 of the CRPD which focuses on school culture, policy and practice to accommodate the differing requirements and identities of individual students. The requirements and identities of individual deaf learners may very well be accommodated in separate rather than mainstream schools. An earlier protocol, the Salamanca Declaration, had been wary of such negation when it made this ‘sensory exception’ owing to the particular communication needs of learners who are deaf; their needs may best be accommodated in special schools for the deaf.25 This is because deaf learners would then be at schools where sign language is already a part of the implicit curriculum as there is a critical mass of users of the language.26 It is these other users of sign language who are appropriate peers for many deaf learners.
The GC 4 emphasises placement in mainstream schools because it misdirected itself through a medical perspective understanding of appropriate ‘peers’ for deaf learners as typically developing, non-deaf and non-sign language using. The GC 4’s implied definition of peers in paragraph 3 is clear that hearing students are the norm or privileged centre thereby ‘othering’ deaf learners. Deaf learners are therefore expected to aspire to join the privileged centre. This normative discourse is based on the medical model which informed the practice of ‘integration’ in an earlier era. It is a discourse which is contrary to the latter-day social and human-rights models on which inclusive education is grounded.
GC 4 views of mainstreaming as the default position to enable inclusive education of all learners results in a one-size-fits-all position which is the antithesis of inclusion. Using placement to define inclusion contradicts the GC 4’s initial use of participatory learning experience as the essence of inclusion. If communication rights and participatory learning experiences are paramount, then inclusion cannot be about places where education occurs, but is about reasonable accommodations for learners to equitably and successfully participate in learning. Places where these accommodations occur are not the issue, reasonable accommodations are the issue.
The first implication here is that places where learners are taught cannot be a defining characteristic of inclusive education as the key issue is about the learners’ rights and ability to access knowledge in whatever setting. The second related implication is that inclusive education for many deaf learners is only possible when they have access to a preferred language such as a sign language that they can visualise. Therefore, assimilation into hearing culture and its spoken languages should never be allowed to override the communication rights of deaf learners. In light of the GC 4’s perceived misinterpretation discussed here, Zimbabwean inclusive education policies are analysed to see how they fare in interpreting the CRPD and placing ZSL in the school curriculum.
Zimbabwean policy documents reviewed in this case example are national laws and lower level interpretations of the laws through policy guidelines on special education in general or where available, the education of deaf learners in particular. Document review was vertical, that is starting with national laws and moving to lower level policies. Documents were sourced by searching relevant government agency websites and consulting policy experts in the Ministry of Education. Analysis revealed four themes: prohibition of discrimination, safeguarding the right to access, expected role of ZSL in the curriculum and comparison of ZSL with other languages in the curriculum.
Two pieces of Zimbabwean legislation assert the right of people with disabilities to access public services such as education and training. The Zimbabwean Education Act of 1996 asserts the right of every child in Zimbabwe to attend school. Section 4, subsection 2 states:
No child in Zimbabwe shall be refused admission to any school on the grounds of race, tribe, colour, religion, creed, place of origin, political opinion or the social status of his parents.27
One view contests whether this facilitates the right of children with disabilities since they are not specifically identified here.28 It can, however, be argued that children with disabilities are first and foremost children so their right to school education is also entrenched in the Act. Therefore even though the Act does not specify disability, let alone deafness, it implies prohibition of discrimination in education on any grounds.29 It argues that such an interpretation is in accordance with the CRPD. Article 24(1) of the CRPD stipulates that the ‘State Parties recognise the right of persons with disabilities to education ... without discrimination and on the basis of equal opportunity, States shall ensure an inclusive education system at all levels.’30
Denying deaf children education would be contrary to the education-for-all spirit and moral on which the law is grounded. This spirit is more explicitly captured in another piece of Zimbabwean legislation.31 The Disabled Persons Act expressly outlawed the denial of people with disabilities access to public premises, services and amenities in clear accordance with the CRPD. Section 8 of the Act states: ‘No disabled person shall on the ground of his disability alone be denied the provision of any service or amenity ordinarily provided to members of the public... ’ If it is agreed that education is a service, then this section of the Act would appear to be complementing the Education Act in ensuring that children with disabilities have a right to school education. The Disabled Persons Act states in section 7:
Where premises, services or amenities (are considered) inaccessible to disabled persons by reason of any structural, physical, administrative or other impediment to such access the provider of the service may be required to undertake such action as may be specified in order to secure reasonable access by disabled persons ...
What the foregoing prohibition of discrimination implies is that this law safeguards the right of people with disabilities to access public buildings, services and amenities and where these are considered inaccessible, service providers must rectify this. For example people with physical disabilities who cannot access public buildings which only have stairs, can take the owners of such buildings to court using this Act in order to get the buildings altered so that they can access them. Reference to ‘other impediments to access’ appears to be an open, catch-all phrase which can also be used to the advantage of people who are deaf. This phrase appears to allow wide interpretation which recognises not only physical and structural impediments to physical access, but also various other impediments to accessing services. Access in education can be conceptualised as formal, physical or epistemological.32 The legislation is not restricted to ensuring the right to formal, physical access, but can also be interpreted as facilitating epistemological access as suggested by the phrase ‘other impediments to access’ in section 7 of the Act.33 Interpretation that focuses on epistemological access would be consistent with the CRPD’s focus on learner experiences while focus on physical access would be consistent with the GC 4 focus on specific places.
This moral interpretation of the law which embraces epistemological access is supported by the Zimbabwean policy document Guidelines on equal access to education for learners with disabilities.34 The policy stipulates that children with disabilities be provided with disability-friendly facilities so that they are able to access instruction. It is implied that once they have physical access to schools, learners with disabilities need only to indicate how they are impeded from accessing knowledge in the schools in order to get redress from the law. For example deaf learners could employ this provision of the Act to observe that no one will be helped by any one-size-fits-all approach to deaf education.35 The legislation could be used to argue that employing a one-size-fits-all approach to teach deaf learners impedes epistemological access. It could be argued that access would only be possible if schools made reasonable accommodations by using ZSL in education. Adjustments could also involve streaming the deaf learners so that those who understand ZSL better could be taught using ZSL in a bilingual approach, while those who would benefit from spoken language could be taught verbally. Inappropriate teaching approaches could therefore be cited under the Act as ‘other impediments’ to epistemological access while appropriate adjustments could be cited as disability-friendly under the policy. The Disabled Persons Act and the Education Act complement each other in safeguarding the right of formal and physical access to such services as education and also epistemological access through linguistic access to the curriculum.36 The latter is a reasonable interpretation in light of the Constitution of Zimbabwe’s official recognition of ZSL as one of the 16 languages in Zimbabwe. Legislation has therefore attempted to improve formal, physical access and could facilitate epistemological access through appropriate use of language.
The focus on prohibiting discrimination and safeguarding access through use of appropriate language of teaching is in tandem with the CRPD’s conception of ‘reasonable accommodation’. The CRPD defines reasonable accommodation as:
[N]ecessary and appropriate modification and adjustment not imposing a disproportionate or undue burden where needed in a particular case to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms.
Even though the CRPD and Zimbabwean legislation mandate it, epistemological access through ZSL in schools still requires a properly aligned lower level policy framework. The following section discusses the alignment of Zimbabwe’s education policy framework to the ideals of its legislation and the CRPD.
The policy document Curriculum to be followed in Special Education Institutions advocates bilingual or multilingual mainstream education in which English is taught alongside Shona, Ndebele or other local languages. If Shona, Ndebele or another local language is the dominant home language in an area, the language becomes the language of instruction for the first three years of primary school while English is taught as a second language. From the fourth year onwards, English becomes the language of instruction, and the other language is only taught as a subject. This kind of bilingual-education policy is based on a developmental maintenance model as it aims at developing a student’s local, home language skills to full proficiency, and full bi-literacy in English.37 For hearing students the choice of local language to use in mainstream education is usually a straightforward matter because this is the language used in the home. On the other hand, deciding which language is the first, home or local language for deaf learners is complicated by the diversity of deaf learners, and the need to make decisions within the optimal period of language acquisition yet their predisposition to language is not yet certain. Deaf learners’ individual needs, strengths and experiences are so varied that deaf learners could become bilingual in various ways.38 Some learn to sign first, and then learn an oral form of a hearing language, while others learn to speak from hearing parents followed by learning to sign. The deaf child should be the guide regarding his or her disposition toward a more oral or more visual (sign) language.39 Decisions about degree of exposure to signed and spoken language to be used as the deaf child’s first language have to be made very early, at a time when there is rarely enough information to determine the child’s predisposition. Many deaf children in Zimbabwe are identified rather late40 and arrive at school without any language at all, spoken or signed.41 This situation further complicates decisions about predisposition towards a first language. All three schools for the deaf interpret the bilingual policy to mean the teaching of English and Shona or Ndebele, in the same way that mainstream schools teach hearing learners. ZSL is not taught as a subject in any of the schools despite the policy Curriculum policy: Primary and secondary schools which says that it is a subject for the hearing impaired. The teaching of Shona or Ndebele, rather than ZSL indicates that the schools have decided that Shona or Ndebele is the first language of deaf learners.42 This audist position is indicative of the medical model in which deaf learners are expected to join the privileged centre in tandem with GC 4 misinterpretation. There are several reasons why schools do not comply with the policy on teaching ZSL, but one reason appears to be inherent in the policy document and relates to the expected role of the language. This is discussed in the next section.
One reason for non-compliance with the policy on teaching ZSL emanates from an internal inconsistency of the policy. In its explanation of how bilingual or multilingual education is to include previously marginalised languages in Zimbabwe, the policy provides a clear time-frame for the gradual and systematic introduction of all locally spoken minority languages starting from 2002 up to 2005. The introduction of the spoken minority languages in phases, such as up to grade four in 2002 and then up to grade five in 2003 and so on, indicates that human and material resources were incrementally availed to ensure success at the various levels. An inconsistency in this otherwise well planned introduction of previously marginalised languages, is that there is nothing written about when and how ZSL is to be introduced. This silence might suggest that the policy-makers assumed that human and material resources were already in place in the schools for the deaf and so the language would be introduced with effect from the date of the policy document in 2002. This suggests that ZSL was ‘othered’ as focus was on the special schools rather than availability of adjustments within them. Adjustment would have included teacher education in sign language to appropriate levels. Whatever the actual reason, the net effect is that the language has not been adopted as a subject in any of the three special schools for the deaf.
The policy might also be incomplete as it lists ZSL as a subject to be taught, but does not show who is to teach it or what skills, fluency and qualifications they should have. The manner that the learning of ZSL is supposed to be organised has not been made clear by policy, and therefore the formal teaching and learning of the language as a subject had not even begun, nearly 20 years after the policy was issued. This is despite the Curriculum policy: Primary and secondary schools indicating that all languages have equal time allocations of four and half hours per week. ZSL is referred to as a subject ‘for the hearing impaired’ and this indicates that it is to be offered on condition that there are deaf and hard of hearing learners who need it in the school. ZSL is considered as among ‘other local languages’ which include previously marginalised languages spoken in Zimbabwe other than English, Shona and Ndebele. In addition, policy stipulates that all learners will sit the public examinations,43 but this gives rise to uncertainty on the role that ZSL should play in these examinations.
Government policies mandate various accommodations to enable deaf candidates to access examinations through the provision of extra time, sign interpretations of examinations, speech-reading and finger-spelling in examinations as well as modification of syntax and vocabulary among others.44 In order to enable access to examination questions, the policy stipulates:
Modifications can be made to general vocabulary and syntax by approved teachers of the deaf well in advance of the examination date. Such modifications may not be done to vocabulary specific to the subject.
The policy also allows the principal to ask for the signing of questions to candidates who were normally taught through signing if access to questions was not possible through other means. The deaf candidates are not allowed to sign their responses to the examination items which perpetuates misperception of sign languages as inadequate access tools instead of natural languages, quite in tandem with GC 4 misinterpretation in paragraph 34(d). This reflects a deviation from the social, linguistic model in the text of the CRPD. Modifications mandated by the same policy circular for signed examinations were that the principal should provide for sign language interpreters to sign examination instructions or questions to deaf learners in each paper. These interpreters are specialist teachers with experience in teaching deaf learners and they become special invigilators who carry out signed examinations and also become markers for the candidates’ scripts. These modifications are in the spirit of removing linguistic impediments to accessing public examinations in line with the CRPD.
The policy specifies that the signing of examinations is meant for candidates who are normally taught through signing. This policy ideal might not be matched by the reality on the ground. The reality is that there is restricted input of sign language in formal learning situations where children are taught by teachers who are not fluent signers.45 In schools where spoken language is mostly used, the teachers are unlikely to have the fluent signing skills that come with regular use. Interpretation requires native-like competency.46 Therefore there appears to be a mismatch between the policy’s idealistic notion of signing for the deaf candidates and reality. The reality is that there are no learners who are formally taught through fluent sign language. A related reality emanating from the lack of regular, consistent use of signing is that the schools might not have teachers with sufficient competence to interpret examinations into sign language. It can, however, be argued that as the policy advocated the signing of general words and phrases while maintaining the key words of the written language, this is compatible with what some of the teachers do, and so they can be expected to have the competence. The efficacy of signing general words and phrases while retaining key words of the written language has, however, been strongly contested.47
The policy position advocating the signing of general words and phrases while maintaining the key words of the written language also appeared to contradict in principle another provision in the same policy which allowed the modification of syntax. Modification of syntax shows acceptance of the principle that the examination is being interpreted into another language: A sign language. This principle was contradicted by the policy’s stipulation that subject-specific vocabulary from the written language must be maintained and not modified. As changes in general and subject-specific vocabulary are a necessary part of any real interpretation from one language to another, the policy’s outlawing of modifications to subject-specific vocabulary is inconsistent with the basic principles of interpretation. The policy therefore has internal inconsistency as it is based on two incompatible philosophies. On one hand, it allowed signing and changes to syntax, both of which are concessions based on a philosophy of the acceptance of human diversity hence interpretation into a more accessible language. On the other hand, the policy outlawed changes to subject-specific vocabulary and candidates’ signed responses to examination questions, which are stipulations that could be viewed as based on an audist philosophy that places a higher value on sound-based, written languages over signed ones.48 This may be based on fears of diluting the essence of the subject under examination because policy-makers may not believe that sign language is a real language capable of being used to examine academic subjects. It could also be based on the observation that ZSL is not sufficiently developed for academic purposes. In any case, the prohibition of changes to subject-specific vocabulary results in internal contradictions to the policy. This might defeat the purpose of enabling access to the examination. It is understandable that the policy does not want the examination content to be changed. What the policy-makers may be unaware of is the possibility that teachers who are able to interpret correctly can still maintain the subject-specific content intact even if the language and the form presenting the material changes. The policy’s choice of the word ‘modifications’ instead of ‘interpretation’ or ‘translation’ in reference to the written language is a telling example of the hidden bias towards sound-based language. In an explicit show of audism the policy went on to state:
For aural tests, special amplification may be used or tests may be read to enable candidates to lip-read. In addition to speech-reading the content of the tape in an aural test, the presenter may finger-spell the initial letter of words which are easily confused.
In light of the above results, it can be concluded that the role that ZSL is expected to play in teaching and learning in special schools is ambiguous. The study found contradictions where, on one hand, legal and some policy positions took a diversity perspective viewing ZSL as a real language for inclusive education while on the other hand there were policy positions which took a deficit perspective viewing ZSL as a crutch to augment broken communication. Lower level policies tended to downplay the role of ZSL for teaching and examination and this contrasts government’s legal position to utilise this language for these purposes. Such contradictions lead to uncertainty about whether it is a real language that can be used as a language of teaching and learning. Even though the constitution and some policy documents refer to ZSL as a language, it does not get the same equitable treatment that other previously marginalised spoken languages are getting in policy and practice. ZSL was not understood to be an independent visual-gestural language of equal standing to any spoken language. These contradictions can be traced back to one-size-fits-all, deficit interpretations of Zimbabwean inclusive education policies and the CRPD. There were also instances of inconsistencies which resulted from policy co-articulation as some policies were imbued with perceptions of deafness as a disability at the same time also having aspects that recognised deaf people as a linguistic minority. The deficit interpretations and inconsistencies are despite provisions that recognise deaf learners’ right to a preferred language of instruction such as sign language. The demeaning of ZSL could reflect a hangover of patronising, colonial attitudes towards this language which was marginalised in colonial times. This paper argues that the contradictions follow Hart’s Separation Thesis in which those taking the diversity perspective opined the law as it ought to be while those who took a deficit perspective championed the law as it is.
It is therefore recommended that in order for ZSL to take its proper place in schools, policy-makers should leverage progressive legislation and align policies to a diversity perspective that recognises ZSL as a real language. This would allow the language to have comparable status to other languages that are being used in the school system. ZSL could then be taken as the first language of pupils who prefer it so that it can be used for inclusive education in a multilingual curriculum in mainstream and special schools.
More generally, it is recommended that interpretations of international disability protocols such as the CRPD should be open-minded to avoid unwittingly reverting to one-size-fits-all scenarios that inclusive education is intended to remedy. If the case example of deaf learners is taken into account it may be prudent to avoid defining inclusive education in terms of places where education takes place, in other words mainstream versus special schools. The overriding defining characteristic of inclusive education would appear to be access to knowledge rather than specific geographical settings. On this basis, a more appropriate reconceptualisation and redefinition of inclusive education in the GC 4 is recommended.
15. M Musengi & C Storbeck ‘Teaching in residential schools for the deaf in Zimbabwe: Professional and vocational perspectives’ (2015) 16 Journal of the International Association of Special Education 14.
24. JJ Murray et al ‘Intersectional inclusion for deaf learners: Moving beyond General Comment no. 4 on Article 24 of the United Nations Convention on the Rights of Persons with Disabilities’ (2018) Journal of Inclusive Education 1.
- Shimelis Tsegaye Tesemma
- BSc (Addis Ababa University), MA (Addis Ababa University), DEd (Unisa)
- Susanna Abigaêl Coetzee
- BA Ed (RAU), BEd (Potchefstroom) MEd (Potchefstroom), DEd (Unisa) Certificate Programme in Law (Unisa) LLB (Unisa)
- ST Tesemma & SA Coetzee ‘Conflicting discourses on conceptualising children with disabilities in Africa’ (2019) 7 African Disability Rights Yearbook 59-80
- Download article in PDF
Despite the wide ratification of the United Nations Convention on the Rights of Persons with Disabilities , children with disabilities are still marginalised and their status as rights holders not fully acknowledged in many parts of Africa. In response to the call for research to focus on a distinct African conceptualisation of disability , an exploratory desk study was conducted on the disability discourse on children with disabilities in Africa. Though the authors uncovered positive African cultural and legislative narratives of disability, the dehumanising discourse identified, was more pronounced. The authors suggest that any strategy to improve the plight of children with disabilities in Africa will have to take into account and not underestimate the dehumanising discourse. The power of discourse should be used to emphasise the positive African cultural and legislative narratives of disability to counter the dehumanising discourse.
The Kigali Declaration, adopted in 2003 during the first African Union Ministerial Conference on Human Rights in Africa, laments the absence of sufficient protection of children’s rights and the plight of vulnerable groups including persons with disabilities in Africa.1 Almost a decade later, the situation has not improved. Koszela records his personal experiences during 2011 of the severe stigmatisation and exclusion that people with disabilities and in particular children, experienced in Patriensa, Ghana.2 Plan International Norway et al conducted a study in Uganda (Kamuli district) and Malawi (Mulanje and Kasungu districts) in 2015 and concluded that the fact that children with disabilities are regarded as easy targets of violence can be attributed to how they are perceived and in particular to the perception that they are useless.3 The African Committee of Experts on the Rights and Welfare of the Child issued a press release to commemorate Children’s Day 2016 and identified violence against children with disabilities as one of the continued challenges Africa faces.4 In 2018, Njelesani et al conducted a study on violence against children with disabilities in four West-African countries, namely Guinea, Niger, Sierra Leone and Togo. They positively linked stigma, traditional beliefs and the perception that children with disabilities are worthless to the violence perpetrated against these children. 5
It is evident that the contention of the National Disability Authority that the social construct of disability is a barrier to social inclusion because it supports the denial of human rights and resistance to change is correct.6 There is a need to reconceptualise people with disabilities in Africa. This need was indeed identified in a study conducted in nine Southern African countries under the auspices of the Open Society Initiative for Southern Africa, the Open Society Foundations' Disability Rights Initiative, and the Open Society Foundation for South Africa. 7
Concepts or ideas are formed and reinforced by means of discourse8 with the result that the disability discourse will empower or disempower, include or exclude.9 One can therefore agree with the Foucauldian notion of discourse which stresses the role of discourse in the establishment, maintenance, extension and resistance or mobilisation of power relations.10 Discourse can legitimise a dominant social ideology and support unfair discriminatory practices against children with disabilities. Or it can play an important role in resisting disempowering discourses, such as the dehumanising-disability discourse, and replace them with empowering and equalising discourses.11 Cobbinah argues that language, names, tags and labels carry meaning that reinforces behaviour.12 The nature of the response that a name triggers relates to the stereotypical meaning attached to such a name.
The authors conducted an exploratory desk study on the disability discourse on children with disabilities in Africa to determine how these children are conceptualised. They worked deductively by basing explanations and conclusions on a few examples.13 They identified a pronounced dehumanising discourse, but also initiatives to promote positive African cultural and legislative narratives of disability.
One initiative to change peoples’ conceptualisation of people with disabilities is the adoption of the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa of 2018 (African Disability Protocol).14 The fact that the African Disability Protocol is adopted as an African initiative indicates the presence of a regional awareness of the need to reconceptualise disability in Africa and that there is a need for discourse that will counter discourse that supports the stigmatisation and exclusion of people with disabilities and in particular children with disabilities. The African Disability Protocol was approved for adoption by Heads of State of the African Union on 31 January 2018, but is subject to the ratification by 15 countries to come into force and that has not been the case yet. In the light of the power that discourse holds, the authors hope this article will contribute to the reconceptualisation of children with disabilities in Africa in line with the positive discourse supported in the African Disability Protocol.
The authors organised the article in four sections. In the first, before reporting on the exploratory desk study that they conducted on the discourse on children with disabilities in Africa, they explain when a discourse will be regarded as dehumanising. Thereafter, they present the dehumanising discourse in terms of three main strands that emerged, namely: the discourse portraying children with disabilities as non-humans; as unworthy of social interactions; and as having ‘compromised’ humanness. In the second section, they briefly consider the positive African cultural narratives of disability. In the third section, the authors reflect on legislative narratives countering the dehumanising discourse before drawing conclusions and making recommendations to conclude the article.
In the medical models, the emphasis is on protection and welfare and people with disabilities are depicted as sick and in need of being cured. According to this model, a disability is something that is wrong with the child and the identity of a person with disabilities is described primarily through his or her condition.15 In the social models, on the other hand, the emphasis is on the barriers that prevent the child with disabilities from being included in society. The AbleChild Africa identifies three possible barriers, namely, environmental, institutional and attitudinal which ‘can interact in any combination, with an individual’s impairment to prevent them from participating equally in everyday activities’.16 According to Stone-MacDonald and Butera17 in terms of the social model of disability, disability is but one characteristic of an individual that - depending on the individual's social interactions - becomes either more salient or more pronounced.
The human-rights variant of the social model considers disability as the consequence of social organisation and the relationship of the individual to society and aims at the provision of political and social entitlements through reformulation of economic, social and political policy.18 Reformulation of political policy was, inter alia, done through the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).19 The UNCRPD20 defines ‘a person with disabilities’ in terms of the social model to include people:
[W]ho have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.
The major difference between the dehumanising discourse and the human-rights disability discourse is the legal status afforded to people with disabilities. The human-rights discourse is based on the recognition of people with disabilities’ individual autonomy, their independence, and ability and freedom to make their own choices (UN 2006, Preamble). Although the human-rights discourse, as a variant of the social model, is making progress in Africa, the disempowering, dehumanising discourse is still deafening. There is still a strong tendency to portray ‘the person with rights ... to be fully rational, able-bodied, able-minded, and psychologically an adult’,21 thereby implying that people (and especially children) with disabilities cannot be rights holders. Children in general are marginalised because, despite the growing emphasis on children’s rights, they are still regarded as less human, less equal and less deserving of having their rights recognised. Children with disabilities are thus doubly marginalised: first, as children and, second, as persons with disabilities who are defined by what they lack rather than by what they have. 22
A dehumanising discourse is a discourse that fails to acknowledge a person’s humanness, that stigmatises, excludes or dissociates, immobilises and silences, devaluates and invalidates by stripping a person of any self-worth.23 Discourse has the power to perpetuate the plight of persons with disabilities.24 As far back as 1963, Goffman observed that: ‘By definition, of course, we believe the person with a stigma is not quite human.’25 A person who is perceived as not quite human will not be regarded as someone with human dignity and, consequently, he/she will be treated in a manner that is inconsistent with his/her intrinsic worth.26 If a person is dehumanised, he or she is viewed as someone who falls outside the scope of morality and justice, which makes it easy for others to regard any harm done to such a person as morally justified and warranted.27
Three main strands emerged in the dehumanising-disability discourse, namely discourse portraying children with disabilities as non-humans; as unworthy of social interactions; and as having ‘compromised’ humanness which makes them worthless.
According to Stone-MacDonald and Butera, it is common in East Africa to use terms from the ki-vi noun class, which is reserved for inanimate, non-human objects, to denominate people with disabilities.28 In some Namibian villages, children with disabilities are ‘made into objects of superstitious fear’ in that children are warned that if they misbehave, a person with a disability will come and get them. Children are, in other words, taught from a very early age that it is morally acceptable - and even preferable - to distance themselves from and not to have any compassion for persons with disabilities.29
Children with disabilities are either elevated to a superhuman standing or relegated to a sub-human status. A very prominent dehumanising discourse is found in the perception that people with disabilities are possessed by evil spirits or have inherited demonic powers.30 According to Njelesani et al children who are blind or suffer from polio are branded as ‘devils’ in certain communities in Sierra Leone.31 UNICEF Sierra Leone mentions the case of Alpha, a street child with a disability from Kambia in Sierra Leone, whose mother abandoned him because herbalists couldn’t cure him of the ‘debul’ (devil).32 There are accounts from West African communities of children with autism who were thrown into a bush because they were considered ‘possessed’ and their behaviour was deemed ‘demonic’.33 A community member, in the Sierra Leone-part of the study conducted by Njelesani et al, admitted that, in his community it is custom to, when the community has identified a child with disabilities as a witch, take the child into the bush in the middle of the night, kill her and leave her there. The community is then told: ‘The witch has returned where it came from.’34
Stobart documented cases of children who were accused of witchcraft and subjected to ‘exorcism’ or ‘deliverance’ rituals which involved beatings, holding a red hot blade, forced ingestion of potentially fatal substances and incisions to release ‘evil forces’.35 In Sierra Leone, for example, persons with disabilities are forced to drink kerosene.36 In 2013 Cobbinah found the belief that disability is a curse was still quite widespread in Uganda.37 The practice to consult traditional spiritual mediums who are believed to have supernatural powers to keep demons at bay and to bring about healing from ‘disability’ is common in rural Ethiopia.38 In some parts of Ghana, children with psychosocial disabilities are subject to abuse in prayer camps where they are chained to trees for hours, denied food, and exposed to the sun as part of their ‘healing’ process.39 Odoom and Van Weelden reveal that in Northern Ghana two reasons are proffered why children with intellectual disabilities are referred to as kinkirigo (spirit children). These children are either seen as ‘not meant for this world’ or as being sent by the spirits to bring harm to a family.40
Accusations of witchcraft are used to explain the perceived abnormality and unnaturalness of disability.41 In the Central African Republic and neighbouring countries, children (mostly boys) with physical deformities or conditions such as autism, are accused of witchcraft, subjected to abuse and driven out of their homes and communities. Molina reports the case of a ten-year-old girl with a hunchback living in the Democratic Republic of Congo who was abandoned by her mother in the marketplace after her father died. Her witchcraft was regarded as the cause of her father’s death and her ‘hump’ was taken as proof of her witchcraft.42 In the Central African Republic, a disabled child accused of witchcraft can be executed because ‘witchcraft’ is a criminal offence under the Penal Code punishable by execution in cases where the ‘witch’ is accused of homicide.43 In its 2010 Concluding Observations to Nigeria, the CRC Committee expressed its ‘utmost concern at reports of arbitrary killings of children during the course of activities designed to extract a confession of witchcraft or resulting from exorcism ceremonies’. 44
Several child participants in Baffoe’s study on the stigmatisation of people with disabilities in Ghana referred to the fact that their humanness is vilified: ‘People don’t regard us as human beings’, ‘They say all kinds of dirty things about me as if I am not a human being’ and ‘Why can people not accept us for who we are as human beings?’.45 A 12-year-old boy from Guinea with a physical impairment explained that his father took him out of school because the other children called him ‘half a person’ and ‘incomplete’. 46
Discourse that demotes children with disabilities to the status of animals is common. Kumar describes the plight of a Nigerian girl with a clubfoot who is called ‘a goat’ by village children.47 In some places in South Africa, children with albinism are referred to by members of some communities as ‘nkau’, which means ‘apes’, ‘monkeys’ or ‘baboons’.48 This is also the case in certain communities in Swaziland where children with albinism are referred to as izinkawu (monkeys).49
In parts of Togo, children with cerebral palsy or children who cannot stand are called ‘snakes’ and are drowned during a ritual where the children are believed to be sent back to where they came from.50 A participant in the study conducted by Njelesani et al referred to above confirmed that in some communities in Togo children with cerebral palsy who cannot stand are called ‘snakes’ and are drowned during a ritual to ‘prevent the return of the snake in [sic] the family’.51 A study conducted by Bayat in the Ivory Coast (mostly in Abidjan) on children with intellectual and developmental disabilities found that these children are commonly called ‘snake children’. The term seems to have originated from a folktale of a pregnant woman who, although forbidden to do so, ate some food in the woods and dropped a few bread crumps. A snake that ate them became so obsessed with human food that he exchanged places with the unborn child in the women’s womb and was born into the human world.52 Bayat concluded that these children are regarded as ‘animals with no moral status’.53 To get rid of them, they are either killed or taken back into the woods and left there to turn back into snakes or allowed to live in the community as an ‘other’, in other words, a ‘non-human’.54 Julieth, a woman with albinism, recalls how her uncle once told her father to get rid of her because she looks like a fish.55
The plight of children with albinism is at the centre of the demonising discourse. Traditional societies are torn between the contradictory discourses that portray persons with albinism as divine beings on the one hand and sacred monsters on the other.56 They are believed to be in possession of evu - the witch substance - which they can use either in a positive way as a healer, seer, musician, dancer, orator or hunter, or in a harmful way as a witch.57 In Kenya, Swaziland and Tanzania, children with albinism are referred to as zeru-zeru (the Swahili word for ‘ghostlike creature’). The first person with albinism who became a Member of Parliament in Tanzania, Ms Kway-Geer recalls how, when she was a child, other children ran after her shouting ‘zeru-zeru’.58 In the Central African Republic, a child with albinism is believed to be the offspring of a woman who had sexual intercourse with a water spirit.59 In Malawi, people living with albinism are sometimes referred to as napwere which equates them to a tomato with leaf-spots.60 Amnesty International mentions that women with albinism in Malawi are called machilitso, meaning ‘cure’, because of the belief that sex with them can cure men of HIV.61
Hosea, himself a person living with albinism, divulges that people living with albinism are confronted with myths such as they are ‘not human’, ‘never die’, are cursed by the gods and anyone who touches them will become cursed too. Another myth is that anyone possessing charms and potions containing hair, body parts and organs of persons living with albinism will be rich and prosperous.62 Hosea conveys how they had to flee Mwanza in Tanzania after being warned that there were people planning to murder him and his brother (also living with albinism) to harvest their body parts.63 Amnesty International reports children living with albinism in Malawi are hunted like animals because it is believed that their bones contain gold and having their bones in your possession will bring wealth, happiness and good luck. 64
Because children with albinism are defined as something less than human, it is considered acceptable to discriminate against them or mistreat them.65 Mostert attests to the death ritual customary to north-eastern Tanzania where babies with albinism are dropped into a lake and if they drown, it is taken as proof that they were not truly human.66
Another discourse that came to the fore was the one that children with disabilities are unworthy of social (human) interaction. Partly because they are concealed, the majority of children with disabilities in African countries are not registered at birth or their birth is not recorded in public documents. For instance, about 80 per cent of children with visual impairments surveyed in Ethiopia and about 70 per cent of children with multiple disabilities surveyed in Uganda were not registered at birth.67
These children are hidden or abandoned because they are regarded as a sign of impurity, a curse and a shame on their families.68 Members of the community tend to disassociate themselves from members of that family and effectively isolate the child and his/her family from community participation. This can be attributed to the fact that the stigma tends to spread from the stigmatised - the child with the disability - to his or her close relatives. More often than not, those closest to the stigmatised person tend to deny, hide or sever relations with the stigmatised person.69 Ghoneim relates the story of a 13-year-old boy who suffers from cerebral palsy and spina bifida who whenever he and his family visit relatives, is kept in a bedroom away from others because they find his presence embarrassing.70 The common belief that disability is punishment from God results in the practice of hiding children with disabilities in the house so that their supposed sins do not become known.71 Her research team found children with disabilities who were kept hidden away for their whole lives. A women living with albinism in Malawi mentioned, in an interview with Amnesty International, that she and her sister - who also lives with albinism - were given food separately from the other children. 72
Brocco mentions that because mothers who give birth to a child with albinism are believed to be the primary cause of the ‘abnormality’ they are marginalised and the choice whether or not to reject a child with albinism lies mostly with fathers.73 The UN Office of the High Commissioner for Human Rights74 reported the case of a mother who received a one-year prison sentence for killing her 4-month-old baby daughter because she was born with albinism. The father threatened to divorce the mother because having a child with albinism was a bad omen and a disgrace to the family.
Some customs prohibit a person with a disability from attending national or cultural events where royalty will be present (such as the reed dance in Swaziland) because it is believed that ‘a disabled person making contact or coming close to royalty will actually bring bad luck to either the king or the queen mother’.75 Eide and Jele inferred from their national representative study in Swaziland, that there is a belief that people with disabilities are bewitched or possessed by bad spirits. As a result, people with disabilities are not allowed to be part of society.76 Even after death, persons with disabilities are excluded from customary practices as they may not be buried according to traditional funeral rites. 77
It seems to be quite common to deny children with disabilities any participation or voice.78 Non-participation by people with disabilities is not due to inability, but to discriminatory attitudes and practices.79 Their right to develop towards self-determination is denied. Parents do not allow children with disabilities to attend school either because they want to protect them or because they are ashamed of them. Human Rights Watch quotes a person with a mental disability who claimed: ‘People look down upon you; those who know you will not want you to speak in society.’80
The ultimate form of denying somebody self-determination is institutionalisation without consent. Slee correctly describes institutionalisation as ‘social severance’.81 Institutionalisation worsens stigmatisation and stereotyping, and isolates children with disabilities from their communities.82 In the case of Purohit v The Gambia, the African Commission on Human and People’s Rights deals with the forced and indefinite institutionalisation of mentally disabled persons under the Gambian Lunatics Detention Act. The Commission confirmed the following:
The Commission maintains that mentally disabled persons would like to share the same hopes, dreams and goals and have the same rights to pursue those hopes, dreams and goals just like any other human being. Like any other human being, mentally disabled persons or persons suffering from mental illnesses have a right to enjoy a decent life, as normal and full as possible, [our emphasis] a right which lies at the heart of the right to human dignity. 83
People with disabilities - and children in particular - are regarded as worthless and without any future.84 In the Luganda language spoken in Uganda, people with disabilities are called kikulekule, which means ‘something strange’. They are also referred to as kateyamba, which means ‘helplessness’ or ‘someone who cannot help him or herself’.85 They grow up with a profound sense of their own incapacity and being defined by what they are not and what they cannot do.86 Having a child with disabilities is regarded as a setback or a punishment sent by the gods. Children are, it is believed, given to parents to assist them in old age and a child with a disability is incapable of that.87
Plan International tells the story of a ten-year-old girl who is paralysed from the waist down. She is regarded as a liability by her parents who see no use in sending her to school. After all, she has no prospects and will never be able to marry.88 This belief was also evident in a study conducted by the Kenyan Red Cross Society et al on children with disabilities in the Turkana County in Kenya.89 Kavesu conducted a study for Save the Children Sweden in 3 districts, Jonglei, Lakes and Northern Bahr el Ghazal in Southern Sudan and it is evident that girl participants accept that they are regarded as liabilities without any future prospects. The girls commented inter alia: ‘Girls with disabilities are not taken to school because they may not get married and thus bring wealth to the family’ and ‘Parents feel like they are wasting resources sending a girl with disability to school’.90 Sadly, these comments also speak to the marginalisation of girls in general and the fact that their ‘value’ lies in being a commodity. Girls with disabilities do not even have the value of being a commodity. A parent with a child with disabilities who participated in the study conducted under the auspices of Inclusion Ghana in the Greater Accra, Volta, Upper East and Brong Ahafo regions in Ghana commented on her attempts to take her child to school: ‘The teacher in the regular school called to tell me it was useless bringing my child to school. He would never learn anything’.91
A mother with a daughter with epilepsy who participated in a qualitative study conducted in December 2015 in the Kamuli District in Uganda’s Eastern Region by Plan International Norway et al explains that children with disabilities are vulnerable to violence because they are perceived as having no value, ‘are good as nothing’, ‘very useless’ and have ‘nothing good in them’.92
Plan International links the conceptualisation of and the attitudes towards children with disabilities to infanticide and the trade in body parts of children with disabilities in West Africa.93 Infanticide and the trade in body parts illustrate how children with disabilities are objectified and not regarded as human beings with self-worth. In fact, the study conducted in Turkana referred to above found these children are described as ‘not alive’ and ‘dead useless person(s)’.94 Brocco refers to the fact that, in Tanzania, people with albinism are referred to as dili - which means ‘to deal’ - and signifies the fact that their body parts are traded as commodities.95 A participant in a study conducted by Bucaro recalls the common practise in the city of Mwanza in Tanzania where a crowd would run after a person with albinism harassing him or her yelling dili-dili.96 The same beliefs and practices were identified in Malawi and Burundi. 97
During a workshop organised by the Southern African Federation of the Disabled held in Kempton Park in October 2007, people with disabilities described how they were branded by people in their communities. A discourse of invalidation is evident from descriptions such as: ‘morons’, ‘idiots’, ‘stupid’, ‘non-achievers’, ‘not worthy of wasting money on’, ‘useless to society’, ‘remains a child - not expected to ever behave like an adult’, ‘a burden’, ‘a liability’, ‘unproductive’, and ‘cannot be educated’.98
According to Plan International, children with disabilities are regarded as only good for becoming beggars.99 Kamaleri and Eide concluded after a national household survey in Lesotho during 2009 and 2010 that people with disabilities are perceived as ‘objects of charity and passive recipients of rehabilitation’ and excluded from society.100 Wa-Mungai101 argues that beggary is seen as an activity reserved for people with disabilities. In support of his argument, he refers to the Gĩkũyũ phrase Urahooya nĩ kwonja wonjete?, meaning: ‘Why beg as if you are crippled?’ It appears in a song by Daniel Kamau Mwai and also to the Kiswahili phrase, with the same meaning, mbona unaomba kama wewe ni kilema?
There is a general belief that children with disabilities cannot be educated because they are stupid.102 The Akan-speaking people in Ghana, call a person with intellectual disabilities jimijimi or nea wanyinagya n’adwene ho (a person who has outgrown his brains).103 Odoom and van Weelden mention that the Ewe-speaking people in Ghana refer to a person with intellectual disabilities as asotowo (idiot or fool). They also quote an educator in the Navrongo in the Upper East Region who said he is called ‘the teacher of fools’ or the ‘fools’ teacher’.104 In Uganda persons with intellectual disabilities who are also hard of hearing are called kasiru which means ‘a stupid person’.105 The World Health Organisation contends that even teachers who support inclusive education do not have high expectations of learners with disabilities.106
The African disability landscape is, as seen in the foregoing sections, littered with dehumanising and belittling discourses. But, countering those narratives, the Continent also offers us examples of inclusive and disability-friendly discourses, to which we now turn.
As revealed in the foregoing sections, the predominant lay narratives about disability in Africa are dehumanising. But there are societies where discourses are respectful and inclusive with clear indications of the person-first discourse.107 ‘People-first’ language prefers the postmodified noun to the premodified noun:108 ‘Children with disabilities’ instead of ‘disabled children’ and ‘people who are hearing impaired’ instead of the ‘deaf and dumb’ or ‘the deaf’.109 For instance, among the Dinka in Sudan, the phrase raan chie ming is used, which translates to ‘one who speaks using gestures’, to describe people with hearing impairments. It is worth noting that the focus on the mode of communication rather than on the impairment itself is perfectly in line with the social model of disability.110 In the DRC, among the Lingala, the term ebosono is used to describe a person with physical disabilities. The term literally means ‘someone who cannot walk or perform physical tasks’.111 Among the Acholi of Northern Uganda, the term latowa (pl Lutuwa) which means ‘a person with visual impairments’ is used to describe a blind person. Similarly, the term lading yit which is translated as ‘a person who cannot hear’ is used to describe a deaf person.112
In Botswana, the concept kagisano imposes the responsibility for caring for the disabled on societies and communities; denoting that disability is seen as socially constructed.113 This is related to the botho concept in Tswana, which means respect for the humanity in all human beings. A related notion, called ubuntu (in full it reads Umuntu ngumuntu ngabantu), is found among the Zulu. Eze114 argues that the worldview of many other ethnic groups in sub-Saharan Africa is the principle of ubuntu. This concept embodies the fact that ‘a person is a person through other people’.115 The African view of what it means to be human based on Ubuntu, regards disability as a common humanity and any threat to a child with disability is a threat to humanity.116 Berghs117 explains that:
Disablement happens when that otherness or diversity becomes a difference predicated as inhuman, for example, in that a person is viewed as threatening the social order, kinship relations or is viewed as morally outside the realm of what it socially means to be human.
The theory of Goodley and Runswick-Cole118 that intellectual disabilities challenge people to reconsider ‘normative, taken-for-granted, deeply societally ingrained assumptions about what it means to be human’ also rings true with regard to children with disabilities. Because people do not want their idea of what it means to be human disrupted they tend to dis (African-American slang term meaning to ‘put down, fail to show respect, abuse, and disparage’) the person with disabilities and not accept him or her into the human registry. This theory may explain why the ubuntu worldview is dissed in favour of harmful customary beliefs about children with disabilities.
The authors contend that ubuntu, because it is a worldview of humanity as determined by the interrelatedness of people,119 can be utilised to counter the dehumanising discourse. For example, sayings that support the ubuntu worldview such as Motho gase mphshe ga a tshewe sesotlho (no single human can be thoroughly and completely useless),120 could be employed to contradict dehumanising discourse on the worthlessness of children with disabilities.
Human rights instruments counter the dehumanising discourse through the principle of human dignity - dubbed as ‘the normative fountainhead of human rights’.121 A number of countries in Africa have ratified major international human rights treaties which - directly or indirectly - promote a discourse focusing on the dignity of children with disabilities. Human-rights instruments that apply to all people (children included) that are notable in this regard include the Convention on the Rights of Persons with Disabilities (UNCRPD)122 and the African Disability Protocol. 123
Under article 8(2)(a), the UNCRPD calls upon states parties to take measures, to ‘promote positive perceptions and greater social awareness towards persons with disabilities’. The Convention itself contributes towards promoting such positive perceptions and it contains ample evidence of discourse that focuses on people-first language, countering dehumanising discourse. Under its underlying principles, the UNCRPD promotes discourse emphasising people of disability as part of humanity. It calls for the ‘respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons with disabilities’. It also calls for ‘respect for difference and acceptance of persons with disabilities as part of human diversity and humanity’ [our emphasis].124 The UNCRPD counters exclusion and invisibility discourses by urging states parties to take measures to put children with disabilities on an equal footing with other children, to ‘ensure that children with disabilities have equal rights with respect to family life’ and ‘to prevent concealment, abandonment, neglect and segregation of children with disabilities’.125 The UNCRPD contains provisions which are a direct contrast to dehumanising cultural discourses and practices. Under article 8(1)(a)), the Convention urges states parties: ‘To combat stereotypes, prejudices and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life.’
The African Disability Protocol126 contains a similar provision imploring states parties to reconceptualise people with disabilities:
States Parties shall take measures to discourage stereotyped views on the capabilities, appearance or behaviour of persons with disabilities, and they shall prohibit the use of derogatory language against persons with disabilities.
The African Disability Protocol acknowledges persons with disabilities’ inherent dignity, individual autonomy and freedom to make their own choices.127 It further appreciates the ‘value of persons with disabilities including those with high support needs, as full members of society’ (our emphasis).128 The African Disability Protocol defines harmful practices to include ‘behaviours, attitudes and practices based on tradition, culture, religion, superstition, which negatively affect the human rights and fundamental freedoms of persons with disabilities or perpetuate discrimination’.129 Similar to the UNCRPD, the African Disability Protocol urges states to take measures ‘to eliminate harmful practices on persons with disabilities, including witchcraft, abandonment, concealment, ritual killings or the association of disability with omen’ (our emphasis).130
Except for the above instruments, specific instruments were adopted to provide extra protection for children in particular. These include, inter alia, the Convention on the Rights of the Child (CRC)131 and the African Charter on the Rights and Welfare of the Child (ACRWC).132
Children with disabilities are disproportionately vulnerable to non-registration at birth. Without birth registration they are not recognized by law and become invisible in government statistics ... Children with disabilities who are not registered at birth are at greater risk of neglect, institutionalization, and even death [our emphasis].133
Though people-first language is not used in the ACRWC as it is in the UNCRC, it still supports equalising and empowering discourse. Equalising and empowering discourse is especially evident in article 13:
- Value: ‘active participation in the community’;
- Humanness: ‘the right to special measures of protection in keeping with his physical and moral needs and under conditions which ensure his dignity’;
- Social inclusion: ‘fullest possible social integration’; and
- The social model of disability: ‘special measures of protection’, ‘conditions which ensure ...’, ‘assistance’, ‘achieving progressively the full convenience ... to movement and access to public highway buildings and other places’. 134
Depending on the country’s legal tradition, treaties can either automatically become part of domestic law or be domesticated through parliamentary enactment of related laws. Many countries have not only domesticated these international human rights instruments but have also incorporated the spirit of human dignity that lies at the heart of these instruments within their domestic laws. This spirit is especially evident in constitutional discourse. For example, the Constitution of the Republic of Uganda, 1995 (as amended) requires society and the state to ‘recognise the right of persons with disabilities to respect and human dignity’ (our emphasis).135 The Constitution of the Democratic Republic of the Congo, 2005 provides ‘[t]he abandonment and maltreatment of children, in particular paedophilia, sexual abuse and the charge of engaging in witchcraft, are prohibited and punishable by law’.136 The Constitution of the Arab Republic of Egypt, 2014 explicitly guarantees the rights of children with disabilities and ensures them of the government’s commitment to their rehabilitation and incorporation into society.137 Constitution of Kenya, 2010 article 54(1)(a) provides that ‘[a] person with any disability is entitled to be treated with dignity and respect’. It further acknowledges that the manner in which persons with disabilities are addressed and referred to can marginalise them. It thus prescribes that people with disabilities should not be addressed or referred to in a manner that demeans them.138
There are examples of national legislation that criminalise the exclusion of persons with disabilities through upholding the right to non-discrimination or through criminalising concealment. ‘[U]sing words, gestures or caricatures that demean, scandalize or embarrass a person with disability’ constitutes discrimination in terms of the Sierra Leone Persons with Disability Act 3 of 2011.139
Several countries have laws criminalising the concealment of persons with disabilities. For instance, the Zambian Persons with Disabilities Act 6 of 2012;140 the Sierra Leone Persons with Disability Act 3 of 2011;141 and Persons with Disability Act 14 of 2003 of Kenya.142 The Persons with Disabilities Act 33 of 1996 of Zambia contains anti-discrimination provisions including those practices that discriminate among persons with disabilities, such as:
Treating a person with a disability less favourably from a person without a disability; treating a person with a disability less favourably from another person with a disability; requiring a person with a disability to comply with a requirement or condition which persons without a disability may have an advantage over; or not providing different services or conditions required for that disability.
The Kenyan Children Act 8 of 2001 as amended by CAP 141 of 2012 prohibits discrimination against children with disabilities.143 It further requires that a child with a disability accused of an offence be treated with the same dignity as a child with no disability.144 The Egyptian Childhood Law 12 of 1996 (as amended by Law 126 of 2008) provides that children with disabilities have the right to ‘[e]njoy special social, physical, and mental care promoting self-reliance, and facilitating the child's integration and participation in the community’.145 The Act also guarantees the right to rehabilitation of children with disabilities. In terms of this right, children with disabilities have a right to social, mental, medical, educational and professional services that they or their families may require to overcome the barriers created as a result of their disabilities.146 Under the Mauritius Child Protection Act 30 of 1994 sexual offences on children with disability, ill treatment, exposure or abandonment or forcing a child with a disability to beg are criminal offences.147 Though the Act does not specifically mention children with disabilities, it is clear that they are covered under the protection that this Act offers since ‘child’ is defined as ‘... any unmarried person under the age of 18’. 148
Great strides were made towards positive disability discourse in Nigeria on 23 January 2019, when the Nigerian President Muhammadu Buhari signed the Discrimination against Persons with Disabilities (Prohibition) Act 2018 into law. The main aim of the Act is the full integration into society of people with disabilities. In terms of section 1(2) it is an offence to discriminate against a person on ground of his or her disability.149 It can be taken that since discrimination is broadly defined as ‘differential treatment’150 it covers discrimination through discourse. Other offences provided for in the Act include to abuse a person with a disability by employing, using or involving him or her in begging, to parade a person with a disability in public for the purpose of soliciting handouts and to use having a disability as a guise for begging in public.151
The above discourses foster inclusion rather than exclusion, acceptance rather than rejection. They promote humanity’s oneness and, consequently, protect persons with disabilities.152 These discourses can be used as a stepping stone in reconceptualising children with disabilities in Africa. The focus should be to build upon the existing positive discursive practices and create more inclusive, humane and respectful discourses.
Two general observations can be made from the preceding discussions. First, the continent abounds with examples of progressive legislative narratives, where the principles of human rights, human dignity and equality of children with disabilities are promoted. The fact that the UNCRPD is one of the instruments which enjoyed a rapid rate of ratification in the continent is testimony to growing awareness about the issue. Africa’s adoption of the African Disability Protocol, which takes into account existing negative cultural narratives, is yet another commitment to the realisation of the rights of persons (children) with disabilities. The African Disability Protocol, in its Preamble, rightly expresses the prevailing concern that ‘persons with disabilities continue to experience human rights violations, systemic discrimination, social exclusion and prejudice within political, social and economic spheres’.153 Furthermore, in line with these and other relevant instruments, many countries have put in place legislative frameworks that counter dehumanising, denouncing and exclusionary discourses.
Secondly, there is a mixed and contradictory cultural discourse of disability, whereby both the dehumanising, denouncing and discriminatory discourses live side by side with inclusive, human-rights based narratives. Such discourses vary from one community to another and even from one family to another, hence rendering any generalisations about these discourses practically impossible.
Based on these observations, it is important to deconstruct the negative discourses and reconstruct them to reinforce the existing positive, inclusive discourses such as the ubuntu worldview so that the humanising, inclusive and empowering discourse becomes the dominant discourse. That is the first important step towards creating a continent where children with disabilities enjoy their full range of rights, as humans, as rights holders and as equal citizens.
1. African Commission on Human and Peoples' Rights Kigali Declaration adopted at Kigali, Rwanda on 8 May 2003, 19 https://www.achpr.org/legalinstruments/detail?id=39 (accessed 24 October 2019).
2. K Koszela ‘The stigmatization of disabilities in Africa and the developmental effects’ (2013) 10-11 http://digitalcollections.sit.edu/isp_collection/1639 (accessed 24 October 2019).
3. Plan International Norway et al Protect us! Inclusion of children with disabilities in child protection (2016) 51 https://plan-international.org/protect-us (accessed 24 October 2019).
4. African Committee of Experts on the Rights and Welfare of the Child ‘Conflict and crisis in Africa: Protecting all children’s rights’ Press Release 16 June 2016 https://au.int/sites/default/files/pressreleases/30785-pr-dac_2016_acerwc_press_statement_. pdf (accessed 24 October 2019).
6. National Disability Authority Literature review on attitudes towards disability (2006) 27 https://www.ucd.ie/t4cms/0048-01%20NDA_public_attitudes_disability_2006_litera ture_review.pdf (accessed 24 October 2019).
7. H Kotzé Status of disability rights in Southern Africa (2012) 22 http://www.safod.net/library/files/m26904.pdf (accessed 24 October 2019).
10. F Armstrong Spaced out: Policy, difference and the challenge of inclusive education (2003) 4; R Doherty ‘Critically framing education policy: Foucault, discourse and governmentality’ in MA Peters & T Besley (eds) Why Foucault? New directions in educational research (2007) 195.
14. See http://blindsa.org.za/2018/02/13/protocol-african-charter-human-peoples-rights-rights-persons-disabilities-africa/ (accessed 24 October 2019). The Protocol has thus far been signed by five countries. No country has ratified the Protocol.
15. E Barton ‘Discourses of disability in the Digest’ (2001) 21 JAC 555; EM Sammon & G Burchell Family care for children with disabilities: Practical guidance for Frontline Workers in low- and middle-income countries (2018) 11.
16. AbleChildAfrica 2013 AbleChildAfrica Strategic Plan 2013-2016 9 http://ablechildafrica. org/wp-content/uploads/2010/02/AbleChildAfrica-Strategy-2013-2016-FINAL.pdf (accessed 24 October 2019).
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24. R Slee ‘Education and the politics of recognition: Inclusive education - An Australian snapshot’ in D Mitchell (ed) Contextualizing inclusive education: Evaluating old and new international perspectives (2005) 158.
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32. UNICEF Sierra Leone The out-of-school children of Sierra Leone (2008) 42 http://www.unicef.org/wcaro/wcaro_SL_Out_of_school_aug_09.pdf (accessed 10 August 2018).
33. World Health Organisation & Mental Health and Poverty Project Mental health and development: Targeting people with mental health conditions as a vulnerable group (2010) 9 https://www.who.int/mental_health/policy/mhtargeting/en/ (accessed 24 October 2019).
35. E Stobart ‘Child abuse linked to accusations of “possession” and “witchcraft”’ in JS La Fontaine The devil’s children: From spirit possession to witchcraft; new allegations that affect children (2009) 21.
36. United Nations Department of Economic and Social Affairs (DESA) Toolkit on disability for Africa: Culture, beliefs and disability (2016) 11 https://www.un.org/development/desa/dspd/2016/11/toolkit-on-disability-for-africa-2/#English (accessed 24 October 2019).
39. Human Rights Watch ‘“Like a death sentence”: Abuses against persons with mental disabilities in Ghana’ (2012) 59 http://www.hrw.org/sites/default/files/reports/ghana1012webwcover.pdf (accessed 24 October 2019).
41. A Cimpric Children accused of witchcraft: An anthropological study of contemporary practices in Africa (2010) 2, 17 http://www.unicef.org/wcaro/wcaro_children-accused-of-witch craft-in-Africa.pdf (accessed 8 October 2019); Njelesani et al (n 5 above) 156.
42. JA Molina The invention of child witches in the Democratic Republic of Congo: Social cleansing, religious commerce and the difficulties of being a parent in an urban culture. Summary of the research and experiences of Save the Children’s 2003-2005 programme (2005) 20.
43. Art 51-58 Loi N 10.001 Du 06 Janvier 2010 Portant Code Penal Centrafricain Journal Officiel De La Republique Centrafricaine Edition Speciale; R Bannor-Addae Central African Republic: Children, not witches (2009) 2 https://www.unicef.org/infobycountry/car_49658.html (accessed 25 October 2019).
47. D Kumar ‘Africa’s disabled cursed by apathy and abuse’ (2013) 23 September Al Jazeera http://www.aljazeera.com/indepth/features/2013/09/2013922121017135639.html (accessed 24 October 2019).
48. African Child Policy Forum The African report on violence against children ( 2014) 52 https://app.box.com/s/iclv9c70sigmceyl30ym (accessed 24 October 2019); ‘Albinos' lonely call for recognition’ Mail & Guardian 17 May 2012 http://mg.co.za/article/2012-05-17-albinos-lonely-call-for-recognition (accessed 24 October 2019).
50. Plan International Outside the circle: A research initiative by Plan International into the rights of children with disabilities to education and protection in West Africa (2013) 25-26 https://www.planusa.org/docs/education-outside-circle.pdf (accessed 24 October 2019).
58. UN Office of the High Commissioner for Human Rights ‘The human rights of people with albinism in Kenya’ (2014) para 24; DH Salewi ‘The killing of persons with albinism in Tanzania: A social-legal inquiry’ unpublished LLM thesis, University of Pretoria, 2011 10; ‘Surprise of Tanzania’s albino MP’ BBC News 2008 http://news. bbc.co.uk/2/hi/africa/7348528.stm (accessed 24 October 2019).
61. Amnesty International ‘“We are not animals to be hunted or sold”: Violence and discrimination against people with albinism in Malawi’ (2016) 18 https://www. amnesty.org.uk/files/we_are_not_animals_-_malawi_report_-_final_formated.pdf (accessed 24 October 2019).
65. K Allen ‘The human rights case of persons with albinism in Uganda’ (2011) 1 Undergraduate journal of global citizenship 9 http://digitalcommons.fairfield.edu/jogc/vol1/iss1/1?utm_source=digitalcommons.fairfield.edu%2Fjogc%2Fvol1%2Fiss1%2F1 &utm_medium=PDF&utm_campaign=PDFCoverPages (accessed 24 October 2019).
68. African Child Policy Forum The lives of children with disabilities in Africa: A glimpse into a hidden world (2011) 42, 52; Baffoe (n 23 above) 195; Kumar (n 47 above); Plan International (n 50 above) 8, 25; UNICEF Promoting the rights of children with disabilities (2007) 4, 14 Innocenti Digest http://www.un.org/esa/socdev/unyin/documents/children_disability_rights.pdf (accessed 8 October 2019).
70. ‘Breaking “the curse” of disabled children in South Africa’ Al Jazeera News South Africa 21 April 2017 https://www.aljazeera.com/blogs/africa/2017/04/breaking-curse-disabled-children-south-africa-170421190937536.html (accessed 24 October 2019).
82. Inclusion International Hear our voices: A global report - People with an intellectual disability and their families speak out on poverty and exclusion (2006) 44 http://inclusion-international.org/wp-content/uploads/2013/07/Hear-Our-Voices-with-Covers.pdf (accessed 24 October 2019).
89. Kenyan Red Cross Society et al Childhood disability and malnutrition in Turkana Kenya: A summary report for stakeholders and policy (2014) 9 https://www.lshtm.ac.uk/sites/default/files/2019-06/Malnutrition-and-Disability-Report-Full-Report.pdf (accessed 24 October 2019).
101. M Wa-Mungai ‘“For I name thee ...”: Disability onomastics in Kenyan folklore and popular music’ (2009) 29 Disability Studies Quarterly http://dsq-sds.org/article/view/984/1172 (accessed 7 October 2019).
152. DJ Louw (2004) ‘Ubuntu: An African assessment of the religious other’ (1998) August 10-15 Twentieth World Congress of Philosophy, in Boston, Massachusetts https://www.bu.edu/wcp/Papers/Afri/AfriLouw.htm (accessed 24 October 2019).
- Paul Juma
- LLM student on the Masters Degree in Disability Rights in Africa Programme, Centre for Human Rights, Faculty of Law,University of Pretoria; Advocate of the High Court of Kenya
- LLB (Kenya)
- P Juma ‘Right to self-representation for people with mental disabilities in Kenya’s courts’ (2019) 7 African Disability Rights Yearbook 81-95
- Download article in PDF
In Kenya, persons with mental disabilities have a different experience from able-bodied people in the criminal justice system. Regrettably, the rules are applied differently when persons with mental disabilities are the accused. In most cases, they are unable to afford lawyers and are forced to represent themselves. That is when their position becomes more challenging and their vulnerability more pronounced. Their right to give evidence will depend on the individual’s form of disability. Article 13 of the Convention on the Rights of Persons with Disabilities provides for the right to legal capacity including the right to file complaints and to represent oneself in court. The aim of this paper is to look at the extent of Kenya’s implementation record of the right to self-representation and make recommendations on the best possible ways of ensuring that persons with mental disabilities are able to represent themselves and fully participate in court proceedings.
Kenya’s criminal justice system is adversarial in nature. Parties involved in a dispute present their case before an impartial tribunal for determination and judgement.1 The system demands that testimony should be given through oral or documentary evidence. In order for witnesses to be believed, judicial practice requires that their evidence must be declared credible by the judicial officer. That fact is usually determined by the observation of their demeanour.2 Witnesses are expected to have good memory coupled with quick responses if they want their testimony to be believed by the trier of facts. This applies to everyone except people with cognitive or mental disabilities.
There is no single definition of mental disability.3 It varies depending on jurisdictions and professions.4 There are clinical definitions, legal definitions and sociological definitions among others. According to the American Association of Intellectual and Development Disabilities, mental disability occurs when a person has limited adaptive behaviour and understanding ability.5 For the purposes of this paper, a person has a mental disability when he or she has a limited decision making capacity depending on several factors including environmental and social.6 This should be contrasted with legal capacity which is the ‘ability to hold rights and duties and to exercise those rights and duties.’7 Therefore, the difference between mental capacity and legal capacity is that the latter is an absolute right and is not dependent on the former.8
Regrettably, persons with mental disabilities will be readily denied their right to legal capacity on an equal basis with others where it ‘becomes apparent to the court’ that they are ‘not able to understand court proceedings or make’ their defence.9 Surprisingly, this denial may be determined merely by considering the circumstances surrounding the accused person such as their ‘immediate preceding or immediate succeeding or even the contemporaneous conduct’.10 Once that finding is reached, the court will halt the hearing and the affected party will not participate in any further proceedings unless they are declared to be of sound mind. According to the law, one is presumed to be of sound mind when he or she is declared ‘to be capable of making his defence’.11 In case they achieve that fit, then they will have to prove that they are telling the truth and to do this they must strive to overcome the institutionalised hurdles of the adversarial system such as cross-examination. The objective of this article is to look at the extent to which Kenya has implemented the right to self-representation for persons with mental disabilities and suggest reforms geared towards ensuring the adequate participation of persons with mental disabilities in court trials. In order to do this, the article will mainly rely on the Convention on the Rights of Persons with Disabilities12 (CRPD) which is the primary international treaty that deals with the rights of persons with disabilities and which guarantees their rights to legal capacity on an equal basis with others.13
An arbiter of the facts is not expected ‘to descend into the arena and give the impression of acting as advocate’14 on behalf of any of the parties involved. However, in instances where the accused is ‘unrepresented and seems not to understand the court procedures’, the ‘presiding judicial officer’ will be allowed to assist.15 Be that as it may, it is also noteworthy to point out that ‘the court cannot act as an advisor to the accused as to various tactical possibilities open to him as the trial unfolds’.16 But the court has the discretion, upon the application of either party, to allow the use of intermediaries or relevant assistive devices in court in order to facilitate the testimony of witnesses. Despite the Constitution of the Republic of Kenya, 2010 (the Constitution) making provision for the use of intermediaries, parliament is yet to pass any detailed legislation to give effect to that provision. That does not mean that judicial officers cannot assist persons with disabilities to communicate effectively and understand proceedings in court. On the contrary, they have a wide discretion when it comes to the interpretation of laws. Therefore, ‘a judge or magistrate must not preside on a trial like a football match referee’.17 Instead, they ‘must ensure that an unrepresented party’, and especially, a party with a mental disability, is assisted in order ‘to present his case as fully as possible, without the court appearing to lose its impartiality’.18
From the above paragraph, it is not in dispute that persons with mental disabilities have legal rights. However, in order to bring meaning to these rights it is imperative for them to be adequately represented in court. The right to self-representation for persons with mental disabilities in court has elicited fierce debates from around the globe. In Faretta v California19 the United States Supreme Court fundamentally acknowledged accused persons’ rights to self-representation. That right requires the state to grant an accused adequate time and facilities to prepare a defence and to accord them an opportunity to adduce and challenge all the evidence which the prosecution intends to rely on.20 It is aligned with article 12(3) of the CRPD which obliges states to grant persons with mental disabilities with the relevant accommodations in order for them to understand and effectively participate in the criminal process. The concept of reasonable accommodation has been defined by the CRPD to mean:
[N]ecessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms.21
In Kenya, the issue of legal capacity has remained a pipe dream. The current evidential procedures were formulated for those without disabilities, mental or otherwise. The CRPD’s aim is to radically change this position by ensuring that the fair trial rights of people with mental disabilities are respected and protected.
The right to self-representation has been conceptualised under various international instruments. Article 14(3)(d) of the International Covenant on Civil and Political Rights (ICCPR)22 stipulates that:
In the determination of any criminal charge against him, everyone shall be entitled to the following minimum guarantees, in full equality ... (d) To be tried in his presence, and to defend himself in person or through legal assistance of his own choosing; to be informed, if he does not have legal assistance, of this right; and to have legal assistance assigned to him, in any case where the interests of justice so require, and without payment by him in any such case if he does not have sufficient means to pay for it. 23
It is clear from the above provision that every accused person has a right to self-representation. Regionally, article 8(2)(d) of the African Charter on Human and Peoples’ Rights (African Charter)24 and article 7 of the Protocol to the African Charter on Human and People’s Rights on the Rights of Persons with Disabilities (African Disability Protocol)25 ensures the rights of every accused person ‘to defend himself personally’26 and to ‘equal recognition before the law’ respectively.27 In Europe, the right is contained in article 6(3)(c) of the European Convention for the Protection of Human Rights and Fundamental Freedoms (ECHR)28 where all criminal defendants are guaranteed the right to defend oneself.29 Finally, apart from the African Charter and the African Disability Protocol all the other international instruments have limited this right where ‘the interest of justice so requires’.30 Also, all of the instruments are not specific to persons with disabilities.
The main aim of the CRPD is to ‘promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all person with disabilities and to promote respect for their inherent dignity’.31 Kenya ratified the CRPD in 2008. By virtue of article 2(6) of the Constitution, the same now forms part of the laws in Kenya. That article stipulates that all the treaties and conventions which have been ratified by the Government of Kenya automatically form part of the country’s laws even without enabling legislation. Persons with mental disabilities have a right of access to justice on an equal basis with the non-disabled. Moreover, the state has an obligation to ensure that persons with mental disabilities enjoy equal rights to legal capacity with others in all aspects of life. Article 12 of the CRPD provides at that:
- States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.
- States Parties shall recognise that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.
- States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.
- States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests.
- Subject to the provisions of this article, States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property.
In its 11th session, the Committee on the Rights of Persons with Disabilities (the Committee) which is the treaty-monitoring body of the CRPD, in its General Comment on Article 12 on Equal recognition before the Law defined legal capacity in the following terms;
Legal capacity and mental capacity are distinct concepts. Legal capacity is the ability to hold rights and duties (legal standing) and to exercise these rights and duties (legal agency). It is the key to accessing meaningful participation in society. Mental capacity refers to the decision-making skills of a person, which naturally vary from one person to another and may be different for a given person depending on many factors, including environmental and social factors. Under article 12 of the Convention, perceived or actual deficits in mental capacity must not be used as justification for denying legal capacity.32
Simply put, ‘legal capacity is the law’s recognition of a person’s decisions’.33 By ‘persons’ it means both those with ‘mental disabilities’ which includes ‘mental disorders’ and those without.34 The dominating attitude of judges and magistrates in the Kenyan judicial structure is fuelled by the medical model of disability which views disability as a defect which must be cured through medical intervention.35 For example, in Republic v CMW36 the court after finding the accused guilty, but insane, recommended that the country should build ‘a Mental Asylum where persons with mental disabilities facing trial for various offences may be held, and consequently properly medically treated’.37 Also, in Leonard Mwangemi Munyasia v Republic38 the Court of Appeal held that ‘insane’ accused persons who are found guilty should ‘be detained in a mental hospital, prison or other suitable place of safe custody’.39 This reasoning is based on the medical model of disability. The CRPD eschews the medical model of disability and in its stead adopts the human-rights model which focuses on the diversity of PWDs and their interaction with ‘attitudinal and environmental barriers’.40
Regionally, one of the aims of the African Union (AU) towards the implementation of article 12 has been to encourage state parties to accord persons with disabilities their right to ‘full recognition before the law’ and ‘effective access to justice on an equal basis with others’.41 The main goal of the AU under this heading is to get member states to repeal or amend ‘any guardianship and inheritance laws’ which have in the past taken away the freedom to make choices for those with mental disabilities. In its place, states are urged to grant those with disabilities the requisite capacity to enter into ‘legal contracts or take legal action’ on their ‘own behalf’.42
As seen above, the removal of barriers with regard to legal capacity enhances the right to self-representation for persons with mental disabilities. Therefore, the CRPD presupposes that by virtue of being human beings, persons with disabilities must be allowed to ‘enjoy the right to access the civil and judicial system and the independence to speak on one’s own behalf’.43 The concept of ‘universal capacity’ has caused a lot of controversy within the academic community. For example, Christopher Slobogin and Tina Minkowitz support the interpretation that allows for capacity in all aspects of life while others like Michael Bach and Lana Kerzner argue for a narrow approach which should be limited to one’s ‘ability to express an intention’.44 When it comes to the issue of self-representation in court for persons with mental disabilities, the same fierce debates have been advanced.45 In most jurisdictions like the United States, defendants with ‘severe mental illness’ will be denied the right to self-representation since they are considered incompetent to advance any meaningful defence while in that condition.46 In such a situation, the CRPD makes provision for the use of ‘supported decision-making’ models.
The CRPD recognises that every person is an autonomous being with the ability to choose the course of their own lives.47 However, in certain instances, an individual may require some support in order to fully exercise their legal capacity. That means that they need a certain degree of assistance in order to realise their rights.48 This kind of assistance is usually offered by a support person depending on the circumstances of the individual. In a court setting, this person will assist those with mental disability to participate fully during the proceedings. Around the globe, most countries have made an effort towards implementing and incorporating the use of support persons in their domestic laws.49 Kenya is yet to do so. Some of the reasons why this is so includes the lack of political goodwill, limited understanding of the CRPD’s provisions, corruption and inadequate resources.
The laws of Kenya are structured to take away the decision-making capacity of persons with mental disabilities.50 Those laws are still grounded on a ‘system of substitute decision-making’ where decisions are made on behalf of persons with mental disabilities.51 An example of this scheme is the guardianship system which is contained in laws such as the Mental Health Act, Children’s Act and the Civil Procedure Act and Rules52 of 1924 (Civil Procedure Act).
The Civil Procedure Act53 and the Civil Procedure Rules of 2010 (Civil Procedure Rules) provide for the procedure of filing and instituting civil proceedings in Kenya. Section 93 of the Civil Procedure Act provides that all consents and agreements made by a person with a disability should not be done without the permission of the court. An application for permission can only be made by the next-friend or guardian of the suit. With regard to the Civil Procedure Rules, Order 4 rule 1(e) requires plaintiffs and defendants of ‘unsound mind’ to make a written declaration to that effect. In Order 10 rule 1 the plaintiff may make an application for the appointment of a guardian where a defendant of unsound mind has failed to enter an appearance.54 Lastly, order 32 rule 15 provides for the procedure of appointing a guardian or next friend on behalf of a person of unsound mind.55 The position is the stark opposite of what is required under the CRPD. It requires state parties to abolish all forms of substituted decision-making regimes and ensure the restoration of legal capacity to persons with mental disabilities.56
In criminal proceedings the situation is equally appalling. Sections 162-164 and 280 of the Criminal Procedure Code57 of 1930 detail the procedure for determining whether an individual is of ‘unsound mind’. Under these provisions, any person who is declared to be of unsound mind is not allowed to represent himself or herself or be represented by an advocate unless he or she is declared fit to stand trial. Instead, they will be indefinitely remanded in safe custody in serious non-bailable cases or released on bail on the condition that they will be adequately taken care of until such a time when they will be pronounced fit to stand trial. The Committee in the case of Noble vs Australia58 (Noble’s Case) considered a related provisions in Australia’s Mentally Impaired Defendants Act of 1996 which required the detention of persons with mental disabilities who are unable to understand the proceedings indefinitely until such a time when they will be declared fit to plead.59 The Committee found the provisions to be discriminatory and a violation of rights under articles 12(3) (legal capacity), 13(1) (access to justice), 14(1) (liberty), and 15 (freedom from torture) of the CRPD.60
Lastly, the Kenyan Evidence Act61 of 1963 (Evidence Act) is the main legislation that regulates the procedure of giving and receiving evidence in court. Section 2(1) of the Evidence Act provides that it applies to ‘all judicial proceedings in or before any court’. It is also the law that is concerned with a witnesses’ competence to testify in court. With regard to those with mental disabilities, the law provides that they are ‘not incompetent to testify’.62 However, where the disability prevents them ‘from understanding the questions put to’ them ‘and giving rational answers’ then they will not be allowed to give evidence in court.63 In short, their right to enjoy legal capacity is pegged on their ability to understand questions and give rational answers. Those provisions are in contrast to article 12 of the CRPD which requires states to recognise that persons with mental disabilities have ‘the right to enjoy legal capacity on an equal basis with others in all aspects of life’. Moreover, the Constitution of Kenya mandates the state and its people to treat all persons with disabilities with ‘dignity and respect’.64 Therefore, in order to effectively implement the provisions of article 12 of the CRPD, Kenya should endeavour to adopt one or more types of supported decision-making methods such as the formal or intermediary or communication-assistant schemes65 and the use of communication aids.
The Constitution makes provision for the appointment of intermediaries for purposes of assisting ‘a complainant or an accused person to communicate with the court’.66 Unfortunately, the government is yet to formulate any guidelines relating to the appointment and qualifications of such intermediaries. Also, according to the Constitution the appointment of these intermediaries is limited to criminal proceedings. The Sexual Offences Act 3 of 2006 (Sexual Offences Act) also makes provision for the appointment of intermediaries who include any:67
[P]erson authorized by a court, on account of his or her expertise or experience, to give evidence on behalf of a vulnerable witness and may include a parent, relative, psychologist, counsellor, guardian, children’s officer or social worker.
The scheme under the Sexual Offences Act is only limited to witnesses and not accused persons. Section 31 has granted to the court the power to declare a witness ‘vulnerable’ where that witness is among others a ‘person with mental disabilities’. Further, the court is allowed to call any intermediary who will advise it on the vulnerability of such witnesses. However, the court will not convict an accused person solely on the uncorroborated evidence of an intermediary.
The other challenge with the application of this scheme in Kenya relates to the interpretation of the role of intermediaries among different judicial officers. The judicial hierarchy in Kenya consists of superior courts and subordinate courts. The former is made up of the Supreme Court, Court of Appeal, and the High Court in the order of seniority, while the latter is made up of the Magistrates’ Courts and Kadhis Courts. The decisions of the Court of Appeal are binding on the High Court. Some judges have stated that the testimony of the intermediary should be substituted with that of the witness.68 According to them, intermediaries are witnesses who speak on behalf of vulnerable witnesses and not through them. For example in Kennedy Chimwani Mulokoto v Republic69 the court held that;
When the mother of the little girl gave her evidence, she was deemed to be giving evidence on behalf of that little girl. Section 31(7) recognizes the fact that a vulnerable witness can be allowed to give evidence through an intermediary. Therefore, for all intents and purposes, when the mother of the little girl gave evidence, she did so as a legally recognized intermediary, for and on behalf of the little girl. Such evidence was admissible.
Similarly in Francis Ogoti Otundo v Republic70 the court held on the role of an intermediary that:
Article 50(7) of the Constitution provides that in the interest of justice, a court may allow an intermediary to assist a complainant or an accused person to communicate with the court. I believe that if the complainant or accused person is unable to articulate or explain herself well, then an intermediary can be allowed to do so.
Is an intermediary simply a mouth piece of the vulnerable witness or is he or she the witness?71 That question was answered by the Kenyan Court of Appeal in the case of MM v Republic.72 The Appeals’ Court faulted the positions in Kennedy Chimwani Mulokoto v Republic and Francis Ogoti Otundo v Republic. In its place the Court of Appeal responded by holding that an intermediary testifies through the witnesses and not on their behalf. That means that:
[A]n intermediary is a medium through which the accused person or complainant communicates with the court. In our understanding, the evidence to be presented is not that of the intermediary himself or herself but that of the witness relayed to court through the intermediary. The intermediary’s role is to communicate to the witness the questions put to the witness and to communicate to the court the answers from the victim to the person asking the questions, and to explain such questions or answers, so far as necessary for them to be understood by the witness or person asking questions in a manner understandable to the victim, while at the same time according the victim protection from an unfamiliar environment and hostile cross- examination; to monitor the witness’ emotional and psychological state and concentration, and to alert the trial court of any difficulties.
The word through is used also in subsection 4 (b) in describing the protection of the witness by providing an intermediary through whom his evidence is relayed. It is the witness who gives the evidence which is explained and communicated to the court and the reverse through an intermediary in the manner and style developed between the two.
Similarly, in the case of Republic v Elijah Weru Mathenge,73 the accused who had been charged with the offence of murder contrary to section 203 as read with section 204 of the Kenyan Penal Code was diagnosed with psychogenic conversion disorder with aphonia which resulted in him losing his voice while in custody. The court, in an attempt to safeguard the accused person’s right to participation in his trial ruled in favour of the appointment of an intermediary. Moreover, the court affirmed the position in MM v Republic.74 How does this position stand in comparison to the intermediary schemes in England, South Australia, and New Zealand?
According to the English model, intermediaries are registered and are tasked with the function of facilitating communication between witnesses and the court.75 They are used in assisting the following three categories of persons: children, adults with mental disabilities who may experience difficulties when testifying in court, and adults with other forms of physical disabilities.76 Registered intermediaries may include: speech and language therapists, teachers, psychologists, occupational therapists, nurses, and social workers.77 They may take part in the relevant proceedings and translate information or ‘indicate to the court any questions that require rephrasing’.78 Most importantly, an intermediary in this model is not a witness, supporter, or an interpreter.79 Those functions are provided for in section 29(2) of the Youth Justice and Criminal Evidence Act of 1999. That legislative scheme was available only to witnesses. However, in C v Sevenoaks Youth Court80 the High Court of England extended its applicability to defendants in order to ensure their right to a fair trial.81
In South Australia, the use of intermediaries was introduced through the enactment of the Statute Amendment (Vulnerable Witnesses) Act of 2015 (Vulnerable Witnesses Act). That scheme allowed for the assistance of those with communication disabilities in court.82 In fact according to section 14A(3) of the Evidence Act of 1929, communication aids of this nature are available to all people with ‘communication needs’. In this system a communication assistant is usually employed and assistance may be accorded to a witness, defendant or victims.83 Communication assistants are to be appointed by the minister in charge of implementing the Vulnerable Witnesses Act.84 Certain devices like the speak and spell communication gadgets may also be used to assist.85 The main role of the communication assistants is to act a ‘quasi-interpreters’ for the witnesses and defendants.86
In New-Zealand, section 80 of the Evidence Act 2006 makes provision for the use of intermediaries for both witnesses and defendants with mental disabilities. The form of assistance can take various forms which may either be oral, written or technological depending on the circumstances.87 In R v Hetherington88 the Court of Appeal in New-Zealand affirmed the use of an intermediary for a witness with Down syndrome. While doing so the court stated that;
The accused’s right to a fair trial is a keystone of our criminal justice system. It is not the only keystone. People with intellectual difficulties and challenges should be able to come to our Courts and present their evidence in a way that is tailored to their needs to ensure that the trier of fact ... can be as confident as possible that the answers are true answers, that is as to what occurred, rather than the witness being confused and challenged by the questions being asked.
From the above brief analysis of the three jurisdictions, it is clear that intermediaries/ communication assistants only play assistive roles. What happens when an intermediary acts beyond what is lawfully accepted? In R v Christian89 the court had an opportunity to determine this issue. There, the intermediary noticed that the witness was distressed during cross-examination. She decided to put her arm around the witness and asked counsel to lower the tone of her voice. That was done in the presence of the jury. Those comments and her actions aggrieved the accused who later argued that the intermediary had violated his right to a fair trial. However, his assertions were rejected and the court held that the actions of the intermediary were not serious enough to prejudice the rights of the accused. Every case will depend on its own peculiar circumstances. Intermediaries are not witnesses. Their work is only to explain questions to the witnesses or defendants and then state their answers back to the trier of facts. Therefore, they do not testify on behalf of the witnesses as suggested in the cases of Kennedy Chimwani Mulokoto v Republic and Francis Ogoti Otundo v Republic as seen earlier. The intermediary scheme in Kenya is still not in tandem with the requirements of article 12 of the CRPD mainly because the scope of the scheme is only limited criminal proceedings and not to civil proceedings. The position is exacerbated by a lack of guidelines which provides for the procedure for appointment, qualifications, and functions of intermediaries.
Aids to communication may mean the use of augmentative and alternative communication (AAC) methods such as using ‘picture exchange communication systems (PECS), Makaton signing, or speech-generating devices (SGDs)’.90 These methods are usually used to complement the natural speech of an individual. In Kenya, section 26 of the Evidence Act Chapter 60 (Evidence Act) stipulates that:
A witness who is unable to speak may give his evidence in any other manner in which he can make it intelligible, as, for example, by writing or by signs; but such writing must be written, and the signs made, in open court.
Therefore, the court has been granted the discretion to adopt any special measures geared towards improving the quality of testimony for those witnesses who are unable to speak. However, that provision is limited only to those without functional speech. There is no correspondent provision for those with mental disabilities. Similarly, the country lacks an express provision for the use of alternative communication methods in order to assist those with mental disabilities. That does not mean that our courts should just lie in wait for parliament to enact one as those with disabilities continue to be marginalised and denied their rights. This is in tandem with the finding in the 1988 United States case of People vs Miller91 where the court urged that;92
Just because a procedure is unusual does not mean that it should not take place in a courtroom. The courts today should make every effort to open their door to all who seek to come through them. We can no longer take the attitude that if it has not been done in the past, it should not be done in the future. The age-old stereotyping of people with physical or mental disabilities or a combination of both should be dispensed with as soon as possible. The courts have come out of the dark ages with respect to the treatment of the deaf and hearing impaired, and we should likewise do so with respect to other physical and mental disabilities. If the power to appoint an interpreter in cases of an unusual disability does not exist directly by statute, then it does by statutory interpretation.
Therefore, courts have a wide discretion when it comes to the interpretation of the law. They should endeavour to ensure that persons with mental disabilities receive a fair hearing as their non-disabled counterparts. Their evidence should not be disregarded or excluded merely because they are unable to understand questions or give rational answers to them. The state should employ mechanisms which will facilitate their communication in court. In the United States such technologies have been employed successfully without infringing on the rights of any other parties involved. For example in Commonwealth v Tavares93 a witness with cerebral palsy was allowed to testify through ‘a speak-and-spell communication device’.94 Kenya should employ and adapt some of these procedures in its own systems. ‘A fair trial cannot be realised where an accused person does not understand the import of the criminal proceedings’.95 Therefore, courts must ensure that those with cognitive or mental disabilities are able to understand judicial proceedings and participate affectively.
Kenya is lagging behind when it comes to ensuring the right to self-representation for those with mental disabilities. Our judicial system is ridden with some of the most egregious abuses against people with mental disabilities. Our laws are outdated and most of them are still based on the supposition that disability and lack of capacity are intertwined. The lack of guidelines and rules to protect and ensure that those with mental disabilities are adequately assisted when testifying in court has compounded the matter further. Fortunately, not everything is lost. The country has tremendous opportunity to change the present situation by giving effect to article 12 of the CRPD. The revolutionary concept of supported decision-making envisages a situation where everyone has the capacity to make decisions and participate fully in all aspect of their lives including judicial proceedings. It is the only way through which persons with disabilities will live and exercise their rights on an equal basis with the rest of the society.
Therefore, it is important for the state to repeal all substituted decision making laws and replace them with supported decision-making provisions whose aim is to enhance the legal capacity of accused persons with mental disabilities so that they are able to effectively represent themselves. In order to do this, practical measures such as the use of communication assistants, intermediaries, and assistive devices such as the speak and spell communication gadgets may be employed. The state should also promote more awareness on the provisions of the CRPD by training policymakers, judicial officers, prosecutors and police officers.
8. M Scholten & J Gather ‘Adverse consequences of article 12 of the UN Convention on the Rights of Persons with Disabilities for persons with mental disabilities and an alternative way forward’ (2018) 44 Journal of Medicine and Ethics 228.
34. J Craigie ‘Against a singular understanding of legal capacity: Criminal responsibility and the Convention on the Rights of Persons with Disabilities’ (2015) 40 International Journal of Law and Psychiatry 6.
41. The Kenya National Commission on Human Rights (KNCHR) ‘A briefing paper on implementing article 12 of the Convention on the Rights of Persons with Disabilities regarding legal capacity in Kenya’ (2016) 16.
44. C Slobogin ‘Eliminating mental disability as a legal criterion in deprivation of liberty cases: The impact of the Convention on the Rights of Persons with Disabilities on the insanity defence, civil commitment, and competency law’ (2016) 40 Law and Psychology Review 319; T Minkowitz ‘Rethinking criminal responsibility from a critical disability perspective: The abolition of insanity/incapacity acquittals and unfitness to plead, and beyond’ (2014) 23 Griffith Law Review 443; Craigie (n 34 above).
47. N Devi et al ‘Moving towards substituted or supported decision-making? Article 12 of the Convention on the Rights of Persons with Disabilities’ (2011) 5 European Journal of Disability Research 254.
75. P Bowden et al ‘Balancing fairness to victims, society and defendants in the cross-examination of vulnerable witnesses: An impossible triangulation? (2014) 37 Melbourne University Law Review 539 572.
- Ebenezer Durojaye
- Legal researcher, Dullah Omar Institute, University of the Western Cape
- LLM, LLD (Free State)
- Satang Nabaneh
- LLD Candidate (Centre for Human Rights, Faculty of Law, University of Pretoria)
- LLB (Gambia), LLM (Pretoria)
- E Durojaye & S Nabaneh ‘Human rights and access to healthcare for persons with albinism in Africa’ (2019) 7 African Disability Rights Yearbook 35-58
- Download article in PDF
The authors are deeply grateful to the anonymous reviewers and editors of the Yearbook, whose valuable and insightful comments on earlier drafts of this article greatly enhanced the quality of this work. All errors and omissions in the article, of course, remain solely ours.
Discrimination and stigma relating to persons with albinism remain the norm in many African countries. There are documented reports of how persons with albinism have been subjected to gross human-rights violations owing to their colour. While attention has been given to the killings of persons with albinism worldwide, little attention has been given to other human-rights violations they encounter while seeking social services, particularly healthcare services. Discrimination against persons with albinism can lead to deleterious health consequences and at the same time hinder access to care for them. Women are generally historically disadvantaged and continue to encounter challenges with regard to their sexual and reproductive health. Being a woman with albinism can aggravate the situation as these women may encounter multiple forms of discrimination in healthcare settings. Thus, this paper examines the human-rights challenges relating to the health of persons with albinism with a focus on women with albinism in Africa. It draws on the intersectionality approach to argue that women with albinism suffer from multiple forms of discrimination, which further compound access to healthcare services for them. It discusses the relevance of regional human-rights instruments in addressing the right to healthcare of women with albinism. In particular, the paper discusses the potential of the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Women in Africa and the norms developed by the African Commission on Human and Peoples’ Rights as well as its counterparts at the international level in advancing the right to health of women with albinism in the region. Furthermore, the paper recommends to the African Commission and African governments measures and steps to adopt in order to safeguard the right to health of women with albinism in the region.
Albinism is a rare, non-contagious, genetically inherited difference present at birth. It results in a lack of pigmentation (melanin) in the hair, skin and eyes, causing vulnerability to the sun and bright light for persons with albinism.1 The condition is found in both genders, regardless of ethnicity and in all countries of the world. 2
There are various types of albinism with diverse implications for persons with this condition. The most common form is known as oculocutaneous albinism (OCA) and this affects the skin, hair and the eyes.3 There are different types and subtypes of OCA with varying degrees of melanin deficiency. The main ones are tyrosinase negative (OCA1) where there is little or no melanin production; and OCA2 type, wherein some melanin is produced, giving rise to white or cream-coloured skin, sandy-coloured hair and light blue, grey or brown irises in those affected. These are the most prevalent in African countries.4
Due to ignorance and myths, persons with albinism face severe discrimination and violence. Hundreds of attacks against persons with albinism have been reported in 25 countries.5 These acts of violence and abuses against persons with albinism demonstrate how their fundamental human rights are constantly violated or disregarded. Superstitious beliefs about persons with albinism in many African countries are rife and include the belief that they are ghosts, that they never die, that sexual intercourse with a woman or a girl with albinism can cure HIV/AIDs and most grotesque of all, that their body parts can bring about wealth and good luck when consumed in potions and worn as amulets.6 In response to human-rights abuses against persons with albinism, the Former UN Secretary-General Ban Ki-moon on 13 June 2016, called on all countries to end all forms of discriminatory practices that threaten the well-being, health and even the lives of people with albinism, and to adopt programmes that would enable them to play a full part in society. 7
According to the World Report on Disability, disability is a ‘complex, dynamic, multidimensional and contested’ concept.8 At first, disability was viewed exclusively as a medical condition, but subsequently construed as a social construct, which takes into account social and environmental circumstances. These two views are regarded as the medical and social models respectively.9 On the one hand, the medical model ‘locates the disability within the person and views persons with disabilities as objects for clinical intervention’.10 Persons with disabilities are thus primarily seen as ‘passive patients’ and are not empowered to make decisions concerning their lives. 11
On the other hand, the social model of disability makes the distinction between impairment and lost or limited functioning experienced by individuals. The social model further notes that people with disabilities or impairments encounter various barriers simply because of the social structure;12 thus, such barriers may be as a result of social, cultural, physical, material or attitudinal factors, but they tend to exclude people with impairment from mainstream life. This conceptualisation applies to persons with albinism who daily encounter various forms of barriers to living a life of dignity. The social model is complementary to the rights-based approach to disability, which is applied throughout this paper. Indeed, Thomas has advanced the social-model approach through the ‘social relational understanding of disability’.13 By this, he identifies the ‘significance of impairments effects’, that is, the daily impact of living with particular impairments. He further emphasises the implications of understanding the psychosocial effects of disabilism.14 With regard to women with albinism, the impairment effects include poor vision, power imbalance, social prejudice and potential skin damage due to sun. Buttressing this point, a study carried out among 15 adults with albinism in South Africa has shown the negative effects the disablist external environment can have on self-image and on their sense of belonging at home and within the wider community. 15
In addition to these two approaches to disability, the third model - the human-rights model - has emerged. The human-rights model to disability does not define disability, but recognises it as an ‘evolving concept’.16 It sees persons with disabilities not as objects of charity, but as subjects of rights.17 The adoption of the Convention on the Rights of Persons with Disabilities (CRPD)18 in 2006 and its entry into force in 2008 was a historic shift in protecting the rights of persons with disabilities. The CRPD aims to promote and ensure inclusion of persons with disabilities in all aspects of society. According to Viljoen, the CRPD ensures ‘accountability and legal obligations on states’.19
As of March 2019, there are currently 161 signatories and 177 ratifications of the CRPD.20 At the core of CRPD are the values and principles of non-discrimination and equality of opportunity. There are eight guiding principles to the CRPD namely: respect for inherent dignity and individual autonomy; non-discrimination; full and effective participation and inclusion in society; respect for difference and acceptance as part of human diversity and humanity; equality of opportunity; accessibility; equality between men and women; and respect for the evolving capacities of children with disabilities.21 The CRPD targets not only the law, but also prejudicial societal attitudes, which undermine equality. It recognises the personhood of every persons with disabilities and requires states to provide support in exercising that capacity.
In some of its recent decisions, the Committee on the CRPD has affirmed the rights of persons with albinism. For instance, in Y v Republic of Tanzania,22 the Committee found that the government of Tanzania was in violation of article 5 when it failed to protect the applicant from violence as a result of albinism. According to the Committee, since these attacks were a form of violence exclusively directed at persons with albinism, failure to investigate constituted a form of discrimination against persons with albinism. The Committee expressed the view that despite discrimination and acts of violence against persons with albinism, the state has failed to take appropriate measures to create awareness and to redress the violations.
An important point to note from this decision is that the Committee found that acts of violence against persons with disabilities were in violation of article 5 on non-discrimination. This is an implicit recognition of albinism as constituting disability. In addition to violation of article 5, the Committee found that the government of Tanzania was equally in violation of articles 7, 8 and 16 of the Convention. This decision by the Committee sends a strong signal that acts of discrimination and violence against persons with disabilities, especially persons with albinism, will not be condoned.
The Human Rights Council appointed an Independent Expert on the enjoyment of human rights of people with albinism for three years in 2015. The mandate includes the promotion and protection of the rights of persons with albinism at the UN and the regional human-rights mechanisms.23 The mandate of the Independent Expert was extended by Human Rights Council on 22 March 2018.24
At the regional level, there are various human-rights instruments that have a number of provisions that seek to promote and protect the rights of persons with disabilities. The instruments include the African Charter on Human and Peoples’ Rights (African Charter),25 the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Women (African Women’s Protocol),26 the African Charter on the Rights and Welfare of the Child (African Child Charter),27 and the African Youth Charter.28 The African Union (AU) adopted 1999 to 2009 as the African Decade of Disabilities.29
The Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities (African Disability Rights Protocol) was adopted on 30 January 2018.30 The African Disability Rights Protocol is a binding legal document protecting the human rights of persons with disabilities taking into account their lived realities in the continent while maintaining the core values and principles as set out in the CRPD. The Protocol has not come into force as it has yet to be ratified by at least 15 member states.31 Article 1 of the Protocol notes that:
[T]he purpose of this Protocol is to promote, protect and ensure the full and equal enjoyment of all human and people’s rights by all persons with disabilities, and to ensure respect for their inherent dignity.
The African Disability Rights Protocol complements the CRPD by highlighting the continued exclusion, harmful practices, and discrimination affecting those with disabilities, especially women, children and the elderly. The Protocol in the Preamble recognises the risk of violence and abuse, particularly for those with albinism. It equally refers to maiming and killings of persons with albinism. The Protocol, therefore, makes it abundantly clear that persons with albinism are within the treaty’s conceptualisation of persons with disabilities. However, the Protocol fails to address in detail some of the challenges facing persons with albinism in Africa.
The adoption of the African Disability Rights Protocol builds on existing work of the African human-rights system. For instance, on 5 November 2013, the African Commission adopted Resolution 263 on the prevention of attacks and discrimination against persons with albinism.32 Among other things, this resolution requires member states to include in their reports to the African Commission, information on the situation of persons with albinism, including good practices in protecting and promoting their rights.33 In addition, on the same day, the African Committee on the Rights and Welfare of the Child (ACRWC) adopted a Declaration to End Discrimination and Violence against Girls in Africa in which the situation of children with albinism is addressed.34 While these developments are significant, they will only result in positive outcomes in addressing discrimination and violence against persons with albinism if African countries exhibit the desired political will to implement them at the national level. This will require creating an enabling legal environment where rights of persons with disabilities are respected and protected.
Until recently, international and regional human-rights mechanisms had only fragmentally addressed the needs of persons with albinism.35 For instance, the UN Special Procedures Mandate Holders noted that persons with albinism are seen as ‘ghosts and not human beings who can be wiped off the global map’ and are the ‘target of many false and harmful myths in several countries, especially in the African region’.36
Persons with albinism have continued to live in perpetual fear for their lives and physical integrity. The Human Rights Council adopted a resolution in which it expressed grave concern about the ‘attacks against persons with albinism, including women and children, which are often committed with impunity’.37 There are records of routine infanticide committed on children with albinism among some ethnicities in the region.38 The Special Representative on Violence against Children stated that:
Children with albinism are at high risk of abandonment, discrimination and exclusion as a result of the appearance of their skin, and due to disability factors, such as impaired eyesight and high susceptibility to skin cancer and other health risks associated with albinism.39
Myths and superstitions, fuelled by a lack of understanding surrounding albinism and the visible difference in the appearance of persons with albinism can lead to stigmatization, rejection, a lack of acceptance, violence, perceptions of difference and limited social integration.40
The corollary is discriminatory practices in virtually every area of human endeavour, including the health-care setting. Some of the health challenges facing persons with albinism include the fact that they are viewed as a ‘curse’ or ‘omens of disaster’.41 This tends to fuel stigma and discrimination against persons with albinism and further creates barriers to social services, including health.
Non-discrimination is a core human-rights principle that is enshrined in different human-rights treaties,42 and regional human-rights instruments.43 Article 1 of the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW),44 adopts a comprehensive and nuanced definition of discrimination against women. It defines discrimination as:
[A]ny distinction, exclusion or restriction made on the basis of sex which has the effect or purpose of impairing or nullifying the recognition, enjoyment or exercise by women, irrespective of their marital status, on a basis of equality of men and women, of human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field.
This definition by CEDAW is aimed at achieving substantive equality and not merely formal equality. This is commendable since it is aimed at addressing the historical differences and injustices meted out to women. Other provisions on non-discrimination are found in the Universal Declaration on Human Rights (UDHR),45 the International Covenant on Civil and Political Rights (ICCPR)46 and the International Covenant on Economic, Social and Cultural Rights (ICESCR).47 All these instruments prohibit discrimination on various grounds including ‘colour’ and the open-ended category ‘other status’. This can be purposively interpreted to cover vulnerable groups such as persons with albinism. With specific regard to persons with disabilities, article 2 of the CRPD defines discrimination broadly to include:
[A]ny distinction, exclusion or restriction based on disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights. It includes all forms of disability discrimination, including denial of reasonable accommodation.
It should be noted that article 2 of the CRPD is reinforced by article 5 on equality. It can be argued that the non-discrimination provision of the CRPD is modelled on the CEDAW in that they both aim at achieving substantive equality. In other words, articles 2 and 5 of the CRPD are not only aimed at correcting the past injustices experienced by persons with disabilities, but also aim at ensuring that they live a dignified life. In this regard, the Committee on CRPD has affirmed a new model of inclusive equality to include the following:
(a) [A] fair redistributive dimension to address socioeconomic disadvantages; (b) a recognition dimension to combat stigma, stereotyping, prejudice and violence and to recognize the dignity of human beings and their intersectionality; (c) a participative dimension to reaffirm the social nature of people as members of social groups and the full recognition of humanity through inclusion in society; and (d) an accommodating dimension to make space for difference as a matter of human dignity.48
It implicitly envisages transcending not just a medicalised notion of disability but also formal equality in order to achieve substantive equality. The CRPD’s approach anticipates the imposition of a societal duty to dismantle barriers or to restructure the socio-economic environment in order to enable disabled people to participate equally. 49
The concept of intersectional discrimination recognizes that individuals do not experience discrimination as members of a homogenous group but, rather, as individuals with multidimensional layers of identities, statuses and life circumstances. It acknowledges the lived realities and experiences of heightened disadvantage of individuals caused by multiple and intersecting forms of discrimination, which requires targeted measures to be taken with respect to disaggregated data collection, consultation, policymaking, the enforceability of non-discrimination policies and the provision of effective remedies.50
The Committee’s recognition of intersectionality as crucial to addressing discrimination against persons with disabilities is useful in the context of persons with albinism. For persons with albinism, life can be unbearable due to the level of stigma and violence they experience on a daily basis. The situation is even compounded for women with albinism as they are exposed to discrimination on account of colour or skin, gender and disability. These different levels or forms of discrimination are often referred to as intersectionality. In her seminal work on intersectionality, Crenshaw in capturing the plight of black American women has noted that ‘boundaries of sex and race discrimination doctrine are defined respectively by white women’s and Black men’s experiences’.51 In order to highlight the diverse nature of discriminatory practices black women encounter, she metaphorically explains as follows:
Consider an analogy to traffic in an intersection, coming and going in all four directions. Discrimination, like traffic through an intersection, may flow in one direction, and it may flow in another. If an accident happens in an intersection, it can be caused by cars travelling from any number of directions and, sometimes, from all of them. Similarly, if a Black woman is harmed because she is in an intersection, her injury could result from sex discrimination or race discrimination ... But it is not always easy to reconstruct an accident: Sometimes the skid marks and the injuries simply indicate that they occurred simultaneously, frustrating efforts to determine which driver caused the harm. 52
In essence, Crenshaw calls for a rethinking of the definitions of discrimination, which perceive sex and race as mutually exclusive, thereby rendering the simultaneous experience of gendered racism almost non-existent. Rather she argues for a more nuanced and realistic definition taking cognisance of historical and structural oppression of black women. Echoing Crenshaw, Carastathis notes that:
[I]ntersectionality has become the predominant way of conceptualising the relation between systems of oppression which construct our multiple identities and our social locations in hierarchies of power and privilege.53
Some of the benefits of applying intersectionality include simultaneity, complexity, irreducibility and inclusivity.54 Intersectionality responds to lived experiences and helps to capture how oppressions are experienced simultaneously. In a true-life scenario a person in not a woman on Monday, a woman with albinism on Tuesday and a woman from a disadvantaged background on Wednesday. These diverse experiences are captured simultaneously and not treated exclusive of each other. This is consistent with Crenshaw’s notion of structural intersectionality, which seeks to ‘render visible phenomenological experiences of people who face multiple forms of oppression without fragmenting those experiences through categorical exclusion’.55 Crenshaw’s theory resonates perfectly with the lived experiences of persons with albinism in general and women with albinism in particular.
The right to health is well recognised in numerous international and regional human-rights instruments. The starting point for the recognition of the right to health is the UN Charter of 1945.56 The Charter urges states parties to it to respect rights to a higher standard of living and solutions to international health problems. This is buttressed by the Preamble to the World Health Organization (WHO) where it is provided that:
Health is a state of complete physical, mental and social well-being, not merely the absence of disease or infirmity. The enjoyment of the highest attainable standard of health is one of the fundamental rights of all human beings without distinction as to race, colour, and religion.57
Article 25(1) of the UDHR provides that ‘everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services’.58 Although the Universal Declaration is not a treaty, it has been widely accepted as an authoritative document on human rights by states worldwide. In short it is established that some of the norms set out in the UDHR constitute part of customary international law.59 By far, however, the most authoritative provision on the right to health can be found in article 12 of the ICESCR.60 Article 12 of the ICESCR provides that ‘states parties to the present Covenant recognize the right to every one of the highest attainable standard of physical and mental health’. In article 12(2) states are urged to take necessary measures, including taking into consideration underlying determinants of health to realise the right to health.
The Committee on the Covenant on Economic, Social and Cultural Rights (CESCR) in General Comment 14 has elaborated on the meaning of the right to health.61 According to the Committee, the right to health entails both ‘freedoms’ and ‘entitlements’- the former relates to the right to non-consensual medical treatment while the latter relates to access to healthcare services.62 The Committee emphasises that the right to health does not mean that states must guarantee good health as this is impossible given individuals’ idiosyncrasies. The Committee notes that the right to health contains four essential elements namely: availability; accessibility; acceptability; and quality (AAAQ).63 The Committee explains that availability means that healthcare services must be of sufficient quantity, accessibility implies that healthcare services must be physically and economically accessible, particularly to vulnerable and marginalised groups.64 It further explains that acceptability requires states to ensure healthcare services that are culturally and ethically acceptable. The Committee remarks that quality healthcare services require states to invest in the healthcare sector through training of health providers, payment of competitive wages and provision of facilities.65
While the Committee recognises that the right to health may be realised progressively, it however, notes that the minimum core contents of the right are not subject to progressive realisation.66 The Committee identifies the principle of non-discrimination as one of the core contents of the right to health, which must be realised immediately. In the Committee’s view, states are obligated to ensure the provision of healthcare services to all on a non-discriminatory basis paying attention to the needs of vulnerable and marginalised groups in society.67 The Committee identifies children, persons with disabilities, people living with HIV and immigrants as vulnerable and marginalised groups that deserve special attention in health-care services. This clarification of the Committee is important in assessing steps and measures taken by states to realise the right to health of everyone, including persons with albinism.
In addition to the provision of the ICESCR, all other human-rights instruments relevant to the discussion in this paper include article 12 of the CEDAW68 and article 25 of the CRPD. Article 25 of the CRPD provides that ‘persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability’. It further enjoins states parties to ensure access to healthcare services that are gender-sensitive. The provision also covers access to sexual and reproductive health services and requires states to eliminate discriminatory practices in the healthcare setting against persons with disabilities.
The Committee on the CRPD has noted in General Comment 3 on women and girls with disabilities that states should adopt measures that give priority to healthcare services for persons with disabilities.69 The Committee further notes that women and girls with disabilities particularly encounter challenges with regard to access to sexual and reproductive health services, and to family-planning information, services and methods as well as access to HIV/AIDS services.70 It laments the various challenges facing women and girls with disabilities in the context of healthcare services, which may include discrimination, lack of respect for confidentiality and autonomy, lack of access to information and health facilities, forced or coercive treatment and negative attitudes of healthcare providers.
Furthermore, the Committee affirms that ‘article 6 is a binding non-discrimination and equality provision that unequivocally outlaws discrimination against women with disabilities and promotes equality of opportunity and equality of outcomes’.71 In the Committee’s view, girls with disabilities face multiple and intersectional discrimination on account of their age, gender, sex and disability. This may further predispose them to human-rights abuses including acts of violence, violation of the right to dignity and denial of access to healthcare services.
Thus, the Committee notes that ‘States parties must guarantee to persons with disabilities equal and effective legal protection against discrimination on all grounds’.72 In Munir al Adam v Saudi Arabia,73 the Committee found that failure by the government of Saudi Arabia to provide urgent surgery to save the applicant’s ear impairment from becoming permanently worse was a violation of the right to health guaranteed in article 25 of the Convention. It further notes that ‘States Parties to the Convention are under an immediate legal obligation to respect, to protect and to fulfil the rights of women and girls with disabilities under article 6’ in order to guarantee them the enjoyment and exercise of all human rights and fundamental freedoms.74 While the Committee does not specifically refer to persons with albinism, it is argued that the clarification provided in General Comment 3 on women and girls with disabilities will apply to them. This is further supported by the Committee’s decision in Y v Republic of Tanzania discussed earlier in this paper.75 The Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health noted that ‘people living with albinism often do not receive the necessary special attention, health care or treatment that corresponds to their health needs’.76
At the regional level, articles 16 of the African Charter, 24 of the African Children’s Charter and 14 of the African Women’s Protocol all guarantee the right to health. In interpreting the right to health in the African Charter, the African Commission on Human and Peoples’ Rights (African Commission) has adopted a purposive approach linking the enjoyment of this right with other rights, including life, dignity and non-discrimination.77 For instance in International Pen (on behalf of Ken Saro Wiwa) v Nigeria,78 the African Commission affirmed that a denial of access to treatment to a prisoner would result in violation of the rights to life and dignity.
The African Commission in Purohit v The Gambia,79 a case involving the maltreatment of persons with mental disabilities, noted that articles 2 and 3 of the Charter relating to non-discrimination and equal protection of the law are crucial to the enjoyment of all other rights guaranteed in the Charter. Article 2 of the African Charter provides that states must prohibit discrimination on various grounds including ‘other status’, a phrase that can be interpreted to cover persons with disabilities, including persons with albinism.
The Commission further noted that non-discrimination is a fundamental principle of the Charter that is not subject to derogation. The Commission had reasoned in that case, among other things, that failure to provide proper medical attention to patients with mental disabilities is a violation of the right to health guaranteed in article 16 of the African Charter. This case provides an illustration of how a state may be held accountable for failure to meet the health needs of persons with disabilities, including persons with albinism.
The African Commission in recent times has begun to develop important norms to clarify state obligations with regard to provisions of the African Women’s Protocol. For instance, the Commission has issued two important general comments to clarify the content of article 14 of the Protocol.80 Although these clarifications relate to women in general, they remain very useful in advancing the sexual and reproductive health and rights of women with albinism in Africa. Both General Comments 1 and 2 emphasise the need for African governments to ensure access to sexual and reproductive healthcare services to all women on a non-discriminatory basis. Furthermore, they reinforce the importance of paying more attention to the health needs of vulnerable and marginalised groups in society such as refugee women, women with disabilities and women living with HIV. Undoubtedly, this reasoning of the Commission would seem to apply to persons with albinism in general and women with albinism in particular. In other words, African governments are obligated to eliminate discriminatory practices in access to healthcare services for persons with albinism, especially women with albinism.
As noted earlier, Africa remains the region with the highest number of persons with albinism and experience has shown that they are subjected to discriminatory practices daily. This can undermine their right to dignity and other related rights. In Hoffman v SAA,81 the South African Constitutional Court explains that the denial of employment opportunity to an individual solely based on his HIV status not only violates the right to equality in section 9 of the Constitution, but also impairs the dignity of the individual.82 In explaining the connection between the right to equality and dignity the court reasons as follows:
At the heart of the prohibition of unfair discrimination is the recognition that under our Constitution all human beings, regardless of their position in society, must be accorded equal dignity. That dignity is impaired when a person is unfairly discriminated against. The determining factor regarding the unfairness of the discrimination is its impact on the person discriminated against. 83
While the Hoffman case deals specifically with discrimination in the context of HIV, the principle of law established by the court is relevant in addressing discriminatory practices against persons with albinism, including women with albinism. Thus, failure by African governments to ensure access to healthcare services to women with albinism will amount to a violation of the right to dignity. Dignity requires that all human beings be treated with decency and respect. The notion of dignity is an intrinsic part of every human being, which is not subject to variation or modification. It is how people feel, think and behave in relation to the worth or value of themselves or others. Hence, the right to dignity is universal and uninfringeable by the state or private parties. It should be noted that a violation of the right to dignity not only affects the victim, but the society as a whole, in that it questions how we choose to live or relate to others.84
The various forms of discrimination highlighted above are interrelated. The CESCR in General Comment 14 has emphasised that the right to health is closely related to and dependent upon the realisation of other human rights, including the rights to food, work, education, human dignity, life, non-discrimination and the prohibition against torture.85
This is particularly important as women and children with albinism are vulnerable and exposed to multiple forms of discrimination and violations of their rights such as infanticide, physical attacks, lack of access to education, unemployment, sexual violence and lack of access to healthcare. As earlier indicated, violence against persons with albinism is fuelled by cultural practices and misconceptions. This is often extended to the healthcare setting where discriminatory practices manifest against persons with albinism, since healthcare providers are products of the society.
Unlike a monistic approach to oppression, which tends to reduce complex experiences of simultaneous oppressions to simplistic categories, intersectionality uses the intra-categorical lens, to reveal various forms of oppressions and lived experiences of certain groups.86 According to King, ‘a hallmark of intersectionality is the necessity of addressing all oppressions’.87 Proponents of intersectionality argue that it offers the promise of addressing
white solipsism, heteronormativity, elitism, and ableism of dominant power and hegemonic feminist theory by making social locations and experiences visible that are occluded in essentialist and exclusionary constructions of the category ‘women’.88
This approach is no doubt applicable to women with albinism, who daily encounter discrimination based on their skin and gender. This in turn has led to other forms of discrimination, especially with regard to healthcare services. These multiple forms of discrimination cannot be treated in isolation but must be seen as intersecting. Echoing the social-model approach, the multiple forms of discrimination persons with albinism encountered are often rooted in cultural superstition that tends to disable them from living a dignified life. Consequently, based on prejudices and unfounded societal myths, persons with albinism are deprived of social services, including healthcare services.
The CEDAW Committee has referred to women with albinism as a group of women in a vulnerable situation.89 Also, the Special Rapporteur on violence against women, its causes and consequences has noted: 90
[V]iolence against women is deeply rooted in multiple layers of discrimination and inequality. As these layers of discrimination intersect, violence against women intensifies. Addressing systematic discrimination and marginalization is crucial to ending violence against women.
Additionally, the General Assembly’s Resolution on ‘Realizing the millennium development goals for persons with disabilities’ called for states to pay special attention to the gender specific needs of persons with disabilities, including by taking measures to ensure their full and effective enjoyment of all human rights and fundamental freedoms.91
Several other studies and reports have documented discriminatory practices and human-rights violations persons with albinism experience in Africa.92 Hong et al have captured the different health challenges of persons with albinism in some African countries.93 In their very comprehensive article they identified some of the public-health issues relating to persons with albinism in the continent. It was noted that persons with albinism would seem to have shorter life expectancy compared to others in society. For instance, they noted that in the East Central state of Nigeria, 89 per cent of identified people with albinism were in the age range of 0-30 years94 while another study reported that 77 per cent were under the age of 20 in the same Nigerian state.95 A mean age of 17.8 years was reported in Soweto, South Africa.96 The study further notes that a lack of proper medical attention for persons with albinism often compromises their health needs. It explains that in many African countries due to stigma and discrimination against persons with albinism and lack of trained personnel, persons with albinism encounter difficulty in accessing healthcare services.
The Cancer Association of South Africa (CANSA) has acknowledged that persons with albinism face the highest risk of developing skin cancer. CANSA found that albinism increases skin cancer risk in South Africa. The risk is especially higher for people who rely on state hospitals for the provision of their sunscreen.97 A researcher at the University of South Africa (UNISA) has noted that:
[D]iscrimination against persons living with albinism impedes their right of access to healthcare services, and the government should adopt a comprehensive approach to ensuring that healthcare services specifically cater for the unique needs of this group of people. 98
A study to ascertain the barriers to accessing safe motherhood and reproductive health services in Lusaka for women with disabilities identified the deep traditional beliefs about the cause and transmission of disability which prevents women with albinism from integrating at antenatal clinics.99 An interviewee stated:
[W]hat you must realise is that for the fellow pregnant women, the able bodied, pregnancy is a very difficult time for most of the mothers and it’s got a lot of superstitions about it. So, one, there’s a common belief that the child you are carrying, for example, you want to avoid people like albinos ... 100
In some situations, healthcare providers exhibit prejudices and hostile attitudes towards persons with albinism. While this situation limits access to healthcare to persons with albinism in general it can lead to more devastating effects for women with albinism seeking sexual and reproductive health services. In communities where persons with albinism are isolated, women and girls with albinism may find it difficult to seek information and services relating to contraception, unwanted pregnancies or maternal care. In essence, multiple forms of discriminatory practices against persons with albinism may aggravate their health condition and well-being and at the same time may predispose them to sexual and reproductive ill health. Moreover, the study documents failure by states to adopt appropriate laws, policies and programmes relating to the health needs of persons with albinism.
This would seem inconsistent with the AAAQ approach of the CESCR in its General Comment 14 discussed above. According to the Committee, accessibility has four dimensions, including physical accessibility, information accessibility, economic accessibility and non-discrimination. In essence, states would need to ensure that persons with albinism enjoy unhindered access to healthcare services. More importantly, states must ensure that services to persons with albinism are ethically and medically acceptable and do not undermine their dignity.
Failure to meet the health needs of persons with albinism clearly shows lack of political will on the part of African governments in meeting the health needs, including sexual and reproductive health of persons with albinism. In its Concluding Observations to the government of Ethiopia, the Committee on CRPD has recommended that the government:
[E]nsure that hospital and health-care centre staff are given regular and compulsory training on the rights of persons with disabilities, including on the individual right to free and informed consent, sexual and reproductive health, HIV and sexually transmitted infections.101
At the International Conference on Population and Development (ICPD) in Cairo, the international community affirmed the rights of women and girls to reproductive healthcare including the right to determine the timing and number of their children.102 It was further affirmed that all individuals shall have the right:
[T]o be informed and to have access to safe, effective, affordable and acceptable methods of family planning of their choice of regulation of fertility which are not against the law, and the right of access to appropriate health-care services that will enable women to go safely through pregnancy and childbirth and provide couples with the best chance of having a healthy infant.103
This was reaffirmed in Beijing during the Fourth World Conference on Women. This landmark declaration has now been codified in article 14 of the African Women’s Protocol. This provision can be interpreted broadly to protect the sexual and reproductive health of persons with albinism, especially women with albinism.
In clarifying the provision of article 14 of the Maputo Protocol the African Commission has urged states to take appropriate measures towards eliminating stigmatisation and discrimination in relation to sexual and reproductive health.104 This broadly covers HIV-related stigma and discrimination which often hinder women and girls from seeking information and services in healthcare institutions. More importantly, the Commission enjoins states to adopt legislative measures, administrative policies and procedures to ensure that ‘no woman is forced because of her HIV status, disability, ethnicity or any other situation, to use specific contraceptive methods or undergo sterilization or abortion’.105 This position of the Commission provides a bulwark for persons with albinism who often encounter discrimination in healthcare services. It requires states to take a substantive-equality approach to addressing the multiple forms of discriminatory practices against persons with albinism in society.
More importantly, it requires states to adopt positive measures including the provision of sunglasses, training of healthcare providers and allocation of resources to meet the needs of persons with albinism. In addition, persons with albinism must be involved in any measures aimed at addressing stigma and discrimination against them. This would be consistent with the common principle ‘nothing for us without us’.
From the foregoing, it has become more urgent than ever, that African governments exhibit political will to address the different challenges facing persons with albinism in the region. In the face of persistent acts of prejudice and violence against persons with albinism which may lead to dire health consequences for them, it has become crucially urgent that African governments embark on massive awareness and education programmes to address prejudices and myths relating to persons with albinism. This will go a long way in correcting misconceptions and superstitious beliefs about persons with albinism. It should be noted that articles 2 and 5 of the African Women’s Protocol urge African governments to embark on education and awareness programmes with a view to addressing cultural practices that may impair women from enjoying their rights. These provisions can broadly be interpreted to include prejudices and misconception, which impair women with albinism from enjoying their rights.
As noted above, it will also be important that governments and policy makers include persons with albinism in the development of policies and programmes affecting their health and well-being. A report has noted that any effort to address inequities in health of people must address power imbalance and empower disadvantaged people to participate in decision-making that affects their well-being.106 The right to participation is recognised in articles 29 of the CRPD and 21 of the Protocol to the African Charter on the Rights of Persons with Disabilities. Participation is generally believed to constitute an element of a rights-based approach. Indeed, Mary Robinson, former UN High Commissioner for Human Rights, opines that ‘[p]articipation and active involvement in the determination of one’s own destiny is the essence of human dignity’.107 With regard to the right to health, participation requires that every individual, including vulnerable and marginalised groups should be involved in the decision-making process relating to the adoption of policies and programmes about their health.
The CESCR has noted that ensuring participation of all individuals in the development of laws and policies on health constitutes part of the right to health.108 Participation is a powerful means of ensuring the autonomy of people to make decisions concerning their lives. It allows vulnerable and marginalised groups to air their views on issues that affect their lives. Yamin has argued that effective participation enables disadvantaged groups to challenge political and other forms of exclusion that prevent them from exercising agency over decisions and processes that may affect their lives and health.109 In Pott’s view, people who are likely to be affected by a health policy or programme should have equal opportunity to be part of the decision-making process.110
The former Special Rapporteur on extreme poverty and human rights has noted that participation empowers marginalised and disadvantaged groups to have a say in matters affecting their lives.111 It ensures that the views of disadvantaged and marginalised groups are adequately taken into consideration before decisions are made. This is very important in the context of meeting the health needs of persons with albinism in general and in particular. Exclusion of persons with albinism from participating in decision-making about their health is not only a violation of their right to health, but may also impair the rights to dignity and non-discrimination. Yamin has noted that:
If health is a matter of rights, it cannot be considered a handout, and the people who receive services are not objects of charity from their own governments...; they are agents who have a role to play in the definition of programs and policies that structure the possibilities for their own well-being. 112
In the clinical setting, individuals with albinism should be provided with dermatologic examinations, guidelines on how to shield themselves from the sun, and sun protection products such as sunscreen, sunglasses, opaque clothing that covers most of the skin, scarves, high socks, and wide-brimmed hats. Given that most albinos are unemployed, they cannot afford sun-protective gear, which is expensive in Africa, thus it should be encouraged that society establish measures to support albinos and their families. Governmental endeavors may include assistance with indoor job placement, supplying adequate amounts of sun-protective products and funding for organizations involved in albinism awareness and support. 113
Given the constant acts of prejudice and discriminatory practices against persons with albanism, it will be necessary that African governments enact appropriate laws and policies to eliminate discriminatory practices against them. Where similar legislation already exists, it should be broadly interpreted to cover specific discriminatory practices against persons with albinism. On the other hand, any legislation or policy that may potentially fuel discriminatory practices against persons with albinism generally and in relation to healthcare should be repealed immediately.
Recently, the UN Independent Expert on the rights of person with albinism, Ikpowonsa Ero, has proposed a continental framework to address human-rights violations experienced by persons with albinism.114 The Plan of Action is broadly divided into four sections namely: preventive measures; protective measures; accountability measures; and equality and non-discrimination. In essence, the Plan of Action urges African governments to take proactive measures in order to nip in bud any form of human-rights violations against persons with albinism. The protection measures require African governments to adopt appropriate laws and policies to protect persons with albinism and further ensure their effective implementation. They also require training of healthcare providers on issues relating to the rights of persons with albinism in healthcare settings. The accountability measures require African governments to ensure that perpetrators of human-rights violations against persons with albinism are brought to book.
More importantly, African governments are enjoined to provide support services such as psychosocial, medical, legal and socioeconomic support to persons with albinism that have experienced violations of their rights. Equality and non-discrimination measures require more involvement of persons with albinism in decision-making in society. They also require the creation of a post for persons with albinism with appropriate ministries such as disability, gender or social development. Furthermore, states are required to implement and adhere to the principle of reasonable accommodation in all facets of life for persons with albinism. The Regional Action Plan has now been adopted as a resolution by the African Commission.115 Undoubtedly, these are very practical and important measures that are capable of addressing human-rights violations experienced by persons with albinism in the region. It will also go a long way in addressing barriers to the enjoyment of the right to health of persons with albinism. The ball is now in African governments’ court to ensure the full and effective implementation of this Action Plan.
This paper has shown that persons with albinism encounter stigma and discrimination in virtually every aspect of their lives. More importantly, persons with albinism face challenges in accessing healthcare services. While no human-rights instrument specifically addresses the human rights of persons with albinism, the existing provisions in international and regional human-rights instruments are applicable to them. In particular, the provisions on non-discrimination, dignity and health recognised by the CRPD, African Charter and African Women’s Protocol are relevant in advancing the sexual and reproductive health and rights of women living with albinism. In line with their obligations under international law, African governments are required to take appropriate measures to address discriminatory practices against persons with albinism in general and women with albinism in particular. This requires committing more resources to address the health needs of persons with albinism. In addition, African governments must commit to training healthcare providers in order to meet the specific needs of persons with albinism.
1. This paper uses the term ‘persons with albinism’ rather than the term ‘albino(s)’, which has been labelled as demeaning and offensive by various quarters of the community of persons with albinism for failing to appreciate their humanity first before the condition.
5. Report of the Independent Expert on the enjoyment of human rights by persons with albinism, HRC (18 January 2016) UN Doc A/HRC/31/63 (2016) para 20. See also Preliminary study on the situation of human rights of persons living with albinism (30 July 2014) UN Doc A/HRC/AC/13/CRP.1 (2014) para 10.
7. ‘On Albinism Awareness Day, Ban urges all countries to break cycle of attacks and discrimination’ UN News 13 June 2016 http://www.un.org/apps/news/story.asp? NewsID=54206#.V7DZo7grLIV (accessed 10 February 2019).
11. See C Ngwena ‘Interpreting aspects of the intersection between disability, discrimination and equality: Lessons for the Employment Equity Act: Part 1 (Defining disability)’ (2005) 2 Stellenbosch Law Report 221.
20. See https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html (accessed 4 March 2019).
21. Art 3 CRPD. For an in depth analysis of the CRPD with a special focus on Africa, see TP Van Reenen & H Combrinck ‘The UN Convention on the Rights of Persons with Disabilities in Africa: Progress after 5 years’ (2011) 18 SUR International Journal of Human Rights 133; J Biegon ‘The promotion and protection of disability rights in the African human rights system’ in IGD Plessis & TV Reenen Aspects of disability law in Africa (2011) 53-83.
24. Resolution 37/5: Mandate of the Independent Expert on the enjoyment of human rights by persons with albinism, HRC (9 April 2018) UN Doc A/HRC/RES/37/5 (2018). On her various reports, see https://www.ohchr.org/EN/Issues/Albinism/Pages/Reports.aspx (accessed 21 October 2019).
26. Protocol to the African Charter on Human and Peoples’ Rights and on the Rights of Women in Africa, adopted 11 July 2003, 2nd Ordinary Session of the Assembly of the African Union, AHG/Res. 240 (XXX) (entered into force 25 Nov 2005) art 23.
29. http://sa.au.int/en/sites/default/files/Disability_Decade%20Plan%20of%20Action% 20-Final.pdf (accessed 2 March 2019).
30. Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities https://au.int/sites/default/files/treaties/35475-treaty-protocol_to_the_achpr_on_the_rights_of_persons_with_disabilities_in_africa_e.pdf (accessed 4 March 2019).
31. The Protocol has so far registered only one signature from the Central African Republic. The Protocol can only come into force when it is ratified by 15 of the 54 AU member states that have accepted to be bound by the African Charter.
32. ACHPR ‘Resolution 263 on the prevention of attacks and discrimination against persons with albinism’ (5 November 2013) http://www.achpr.org/sessions/54th/resolutions/263/ (accessed 3 August 2016).
34. ACERWC ‘The Addis Ababa Declaration on ending discrimination and violence against girls in Africa’ (5 November 2013) http://sa.au.int/en/sites/default/files/ACERWC%20-%20Addis%20Ababa%20Declaration%20Discrimination%20and%20 Violence%20Girls-%20Eng.pdf (accessed 3 February 2019).
35. Moreover, in response to the call from civil-society organisations advocating to consider persons with albinism as a specific group with particular needs that require special attention, on 26 March 2015 the United Nations Human Rights Council adopted resolution 28/L.10 on creating the mandate of the Independent Expert on the enjoyment of human rights of persons with albinism, HRC (25 March 2015) UN Doc A/HRC/28/L.10 (2015) http://www.un.org/ga/search/view_doc.asp?symbol=A/HRC/28/L.10 (accessed 4 February 2019).
36. ‘African Children’s Charter (art.Not ghosts, but human beings ... persons with albinism’ OHCHR 4 May 2013 http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=13294&LangID=E (accessed 5 March 2019).
37. Res 24/33: Technical cooperation for the prevention of attacks against persons with albinism, HRC (8 October 2013) UN Doc A/HRC/RES/24/33 (2013) http://www. ohchr.org/Documents/HRBodies/HRCouncil/AdvisoryCom/A_HRC_RES_24_33 _ENG.pdf (accessed 10 February 2019) Preamble.
42. Art 2 International Covenant on Civil and Political Rights; art 2 International Covenant on Economic, Social and Cultural Rights; art 2 Convention on the Rights of the Child; art 7 International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families; art5 5 Convention on the Rights of Persons with Disabilities. The Convention on the Elimination of All Forms of Racial Discrimination prohibits discrimination on the ground of race and the Convention on the Elimination of All Forms of Discrimination against Women on the ground of gender.
47. International Covenant on Economic, Social and Cultural Rights (ICESCR) adopted and opened for signature, ratification and accession by General Assembly resolution 2200A (XXI) of 16 December 1966 (entered into force 3 January 1976) in accordance with art 27.
51. K Crenshaw ‘Demarginalizing the intersection of race and sex: A black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics’ (1989) 1 University of Chicago Legal Forum 143.
76. See UN News ‘Persons with albinism must not be treated as ‘ghosts’, UN experts stress’ available at www.new.un.org (accessed on 25 November 2019)
77. For more on the approaches of the African Commission to the enjoyment of the right to health in Africa, see E Durojaye ‘The approaches of the African Commission to the right to health under the African Charter’ (2013) 17 Law Development and Democracy 393.
80. See ACHPR General Comments: Article 14(1)(d) and (e) of the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Women in Africa (2012); ACHPR General Comment 2: Article 14(1)(a),(b),(c) and (f) and Article 14(2)(a) and (c) of the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Women in Africa (2014).
84. C Dupre ‘What does dignity mean in a legal context?’ http://www.guardian.co.uk/commentisfree/libertycentral/2011/mar/24/dignity-uk-europe-human-rights (accessed 23 February 2019).
89. In its Concluding Observations on the United Republic of Tanzania, the Committee expressed concern at reports that women and girls with albinism had been targeted in ritual killings, recommending that the state party protect them. See Report of the CEDAWFortieth session (14 January-1 February 2008) Forty-first session (30 June- 18 July 2008) UN Doc A/63/38) (2008) https://undocs.org/pdf?symbol=en/A/63/38(SUPP) (accessed 19 November 2019) paras 142 & 143
90. See HRC Report of the Special Rapporteur on violence against women, its causes and consequences UN Doc A/HRC/17/26 dated 2 May 2011 http://www2.ohchr.org/english/bodies/hrcouncil/docs/17session/A-HRC-17-26.pdf (accessed 5 March 2019).
92. See for instance, Human Right Council Advisory Committee ‘Study on the situations of the human rights of persons living with albinism’ submitted to the twenty-eighth session of the Human Rights Council (2015) UN Doc A/HRC/28/75 dated March 2015; International Federation of the Red Cross and Red Crescent Societies Through albino eyes: The plight of albino people in Africa’s Great Lakes region and a Red Cross response (2009); S Fellows Trafficking body parts in Mozambique and South Africa (2010).
97. CANSA ‘Research findings: Albanism increases skin cancer risk in South Africa’ (12 March 2015) http://www.cansa.org.za/albinism-increases-skin-cancer-risk-in-south-africa/ (accessed 30 January 2019).
98. ‘People with albinism need urgent protection’ UNISA 10 August 2016 http://www. unisa.ac.za/sites/corporate/default/News-&-Media/Articles/People-with-albinism-need-urgent-protection (accessed 27 February 2019).
102. UN ‘Report of the International Conference on Population and Development (ICPD): 5-13 September 1994’ UN Doc A/CONF.171/13 (18 October 1994) https://www.un. org/popin/icpd/conference/offeng/poa.html (accessed 4 March 2019).
106. WHO Commission on Social determinant of health ‘Closing the gap in a generation: Health equity through action on the social determinant of health’ (2008) http://reposi tory.essex.ac.uk/9714/1/participation-right-highest-attainable-standard-health.pdf (accessed 5 March 2019).
114. Regional Action Plan on Albinism in Africa 2017-2021: Five-year plan to address attacks and related violations against persons with albinism in Sub-Saharan Africa presented at the 60th Ordinary Session of the ACHPR held in Niamey, Niger from 8-22 May 2017. See Report of the Independent Expert on the enjoyment of human rights by persons with albinism on the Regional Action Plan on Albinism in Africa (2017-2021), HRC (19 December 2017) UN Doc A/HRC/37/57/Add.3 (2017.