Date Published: April 25, 2018
Author(s): Charlotte Capri, Lameze Abrahams, Judith McKenzie, Ockert Coetzee, Siyabulela Mkabile, Manuel Saptouw, Andrew Hooper, Peter Smith, Colleen Adnams, Leslie Swartz.
Intellectual disability (ID) is the most prevalent disability in the world. People with intellectual disability (PWID) frequently experience extreme violations of numerous human rights. Despite greater prevalence in South Africa than in high-income countries, most ID research currently comes from the Global North. This leaves us with few contextually sensitive studies to draw from to advance inclusive citizenship.
Our scoping review aims to investigate pertinent ID rights issues in South Africa, synthesise quantitative and qualitative studies, and provide a synopsis of available evidence on which to base future work. We aim to clarify key concepts, address gaps in the literature and identify opportunities for further research.
We followed strict eligibility criteria. Medical subject heading terms were entered into seven databases. Seven reviewers worked independently, two per paper. Quantitative and qualitative data extraction forms were designed. We followed Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines and registered a protocol. An inductive approach enabled a thematic analysis of selected studies.
By following PRISMA guidelines, 82 studies were assessed for eligibility of which 59 were included. Ten sub-themes were integrated into four main themes: the right not to be discriminated against, the right to psychological and bodily integrity, the right to accommodating services and challenges to rights implementation.
People with intellectual disability face compound difficulties when trying to assert their constitutionally entitled rights. This ongoing project requires serious commitment and action. Statutory obligations to nurture every South African’s human rights naturally extend to PWID and their supporters who forge ahead in a disabling environment.
Most people with disabilities live in low-income countries and represent nearly a quarter of the world’s poorest people (Emerson 2007; Groce et al. 2011a, 2011b). Against this backdrop, approximately 200 million people live with intellectual disability (ID), making it the world’s most prevalent disability (World Health Organization [WHO] & World Bank 2011).
The primary aim of our scoping review was to collect all literature published in peer-reviewed journals on ID rights in South Africa over the past 25 years (1992–2017). We set out to study the ID advocacy, awareness and rights promotion research; describe outcomes of studies on realising human rights entitlements; and identify publications that address claims to citizenship of South African PWID. Following Peters et al.’s (2015) suggestions for scoping reviews, our objectives were guided by questions specific to this study:
We followed the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines and registered a protocol with PROSPERO (CRD42016036100). An inductive approach accommodated thematic analyses of selected studies.
By following PRISMA guidelines, 156 records were identified overall. Ninety-six studies remained after deleting duplicates. Two reviewers screened each abstract resulting in 14 exclusions. Eighty-two studies were assessed for eligibility of which 59 were included for qualitative synthesis (Figure 2).
Underestimating pervasive ableism in South Africa trivialises the exclusion of PWID from realising their rights. Public infantilisation, abuse and taunting perpetuate the isolation of PWID who may find themselves caught between negative public perceptions and attempts at community, occupational and socio-political inclusion. South Africa’s political rights (s19.3a, RSA 1996) indiscriminately entitle prison inmates to vote in elections, whereas citizens with ID face multiple barriers to exercise this right (Combrinck 2014; Hartley 2013; Kopel 2017; Ndenze 2013; Swart 2015). South Africa’s ‘unsound mind’ aphorism maintains an outdated justification for disenfranchising PWID regardless of contemporary support (Article 29a, UN 2006) and successful suffrage elsewhere in the world (Hood 2014; Kjellberg & Hemmingsson 2013; The Electoral Commission UK 2015).
In returning to our aims and objectives, we now see that PWID in South Africa face more difficulties than the general population when attempting to access justice, health, educational, employment and social services. Prejudice increases violence against PWID, but negative bias excludes them from public health and safety campaigns. There is a need to address such discrimination through advocacy interventions similar to those employed in other national rights campaigns, like the HIV/AIDS Treatment Action Campaign4 (tac.org.za).
South African ID rights researchers have aligned their arguments with the Bill of Rights (RSA 1996) and global disability initiatives like the UNCRPD (Drew et al. 2011; UN 2006). Knowledge on ID is still predominantly located in non-intellectually impaired individuals, mostly at universities from which PWID are excluded. If projects are not driven by people with intellectual impairment, their experiences of disablement must at least be included during service development and research planning phases.
We aimed to describe published studies on advocacy, addressing stigma and promoting ID rights and awareness in South Africa. It is beyond the scope of this review to include work on ID in South Africa that has not been published in peer-reviewed journals (i.e. ‘grey literature’), and this limitation can contribute to publication bias.
Our scoping review investigated pertinent issues relating to the rights of PWID in South Africa. We incorporated available research evidence in a synopsis of 59 eligible studies, addressed implications for practice and identified areas for future investigation. Realising the rights of PWID in South Africa to participate as socio-political equals, access services, own their psychological and bodily integrity, and move freely without discrimination is an ongoing project. Barriers to exercising these rights were highlighted. Research evidence advocates that – for a start – the rights and needs of PWID be taken up with serious commitment by the South African state, its legislature and public service departments. Statutory obligations to protect and realise the rights of any South African must extend to PWID and their supporters who are forging ahead in a disabling and service constrained socio-political environment.