The UN Convention is a vision unrealised. Don't celebrate it just yet

It is ten years since the adoption of the UN Convention on the Rights of Persons with Disabilities. A landmark achievement in the international recognition of the rights of disabled people, who comprise one-seventh of the global population and could be said to represent the world’s largest minority group. Finally, the rights of disabled people were globally recognised as the human rights that they are, and signatory governments to the convention committed to a range of actions to promote their recognition and actualisation. 

Yet, in Ngwerere, a dispersed rural community in Zambia close to the capital Lusaka, only an extreme optimist could find evidence of any discernible difference made to the lives of disabled people in those ten years of the UN Convention. A cynic might conclude that the architects of the Convention and its subscribing institutions succeeded only in congratulating themselves on their own liberal progressiveness. Here, and across rural Africa, negative traditional beliefs about disabled people remain deeply engrained, in the minds of the families of disabled children too. It is not uncommon for parents to believe that their own disabled child is not human or is a victim of supernatural possession. More rational, yet equally disturbing and abhorrent, is the prevailing view of families that, in an economic situation that makes survival a daily challenge, a disabled child is a long-term liability and a drain on limited resources. 

The outcomes for disabled people that result from this climate of opinion are, of course, appalling. There are plenty of harrowing individual stories that could be recounted here, but the truth is that we do not yet know the full extent of deprivation, neglect and abuse disabled young people suffer in Ngwerere. Such is the strength of shame and social stigma surrounding disability in Africa, that a significant number of disabled children are quite literally hidden away in their own homes. They are little known outside of their immediate family, let alone to healthcare and education providers, whom their ashamed parents are reluctant to present them to. In Ngwerere, a community of 15,000 not a single disabled child attends either of the two large state schools. Remembering that the World Health Organisation estimates impairment rates in communities like this to be around 15%, it can be deduced that a large number of disabled young people are being comprehensively deprived of education, healthcare and social stimulus. Here at least, the noble intentions and signatures of smartly dressed dignitaries many thousands of miles away have made little headway. In rural areas of the developing world, people are dis-abled more by these attitudes than they are by their impairment. The causes of dis-ability exist principally in the minds of the non-disabled. 

This is not to suggest that legal frameworks are ineffective, nor are they unnecessary. They are crucial. Indeed, in some cases, African governments’ adoption of the UN Convention and passing of their own legislative acts on disability rights give Disability Africa a mandate under which we can carry out our interventions. But they must be recognised as instruments, not as ends to be celebrated in themselves. They are merely the starting point. Any top-down institutional solution to an issue has its limitations and requires concurrent efforts and initiatives at the community level if the vision that it espouses is ever to be truly realised. 

An agreement on paper to include disabled children in mainstream education does not automatically give a young Zambian teacher struggling to teach a class of sixty pupils the capacity to do so. Even in the UK, there is a severe, and widening, gap between the legislation regarding the rights of disabled people and the reality of their lives. The gap in many African countries is much more severe; national government can feel distant to the majority of citizens, state capacity is limited and genuine political will to actually apply legislative commitments may be lacking. 

When the state feels distant and makes little impact on people’s lives, the arena where attitudes regarding disability can really be changed is the local community. When many mothers are yet to have been persuaded of the benefits of advocating for their own disabled children, it is naïve to expect that high-level institutional advocacy for disabled people in Africa will achieve anything on its own. This is not a discussion of the dilemma of a choice between prioritising advocacy and service delivery. It is an argument that both should be combined, and implemented at a community level, through grassroots initiatives, with local ownership and leadership, that families can relate to. 

Some initial interventions at the community level innovatively blur the distinction between service delivery and advocacy, and yet are beautifully simple. More than a decade ago now, Paul Mumba, a teacher in Mpika, Zambia harnessed his students’ unbridled access to their whole community and their natural inquisitiveness in a project to discover isolated disabled children, include them in the classroom and support them. Outcomes were immediately improved, and disabling attitudes of the non-impaired were changed; everybody benefitted! Similarly, running simple dedicated ‘play-schemes’ in rural communities can immediately end a disabled children’s isolation and provide context for assessment of their needs; whilst simultaneously creating interactive opportunities for family and community members to begin to change their expectations of disabled children and reassess their negative attitudes.

These simple initiatives are a central part of the necessary holistic approach needed to improve outcomes for disabled young people in the developing world both immediately and sustainably. Such an approach does not advocate for an inclusive future whilst failing to give practical support to those in need right now. Neither does it simply provide practical help without changing attitudes to ensure that equity for disabled young people is achieved and sustained in the future. If this grassroots approach can be implemented more widely, greater progress can be made towards realising the inclusive global vision laid down by the UN Convention over the next ten years.