Introduction
When the disability movement does not move to disability, the disability moves to the disability movement, and this is what happened in Uganda – disability moved to the disability movement, and it is now disabled. In certain aspects, this disability movement is too deformed to be reformed … (Disability representative, local council in Kampala)
This harsh assessment of the disability movement in Uganda extends the definition of disability from the functional abilities of individuals in their social environment to those of groups and an entire movement. The local council representative was no doubt speaking metaphorically, but his message is clear. The disability movement, with its commitment to activism, advocacy, and the realization of rights, is not functioning in a way that allows meaningful participation and change. As with any disability, this one must be understood in terms of socio-economic and political conditions that hinder ability.
The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) aims to apply the principle of non-discrimination to every human right in every context of a human being's existence. It is legally binding, and therefore its articles should pave the way to future political developments in the disability sector (Ferraina, 2012; Harpur, 2012). Uganda ratified the CRPD and its Optional Protocol on 25 September 2008 without reservations. In so doing, Uganda committed itself to accord the same rights to persons with disabilities (PwDs) as to all other citizens (National Union of Disabled Persons of Uganda [NUDIPU], 2017). But it is one thing to have rights in principle. It is another to implement them in a way that is inclusive and participatory.
In this chapter, we address the paradox of participation: Uganda has a progressive policy of representation for PwDs, but political organization and participation have not yielded real improvement in the lives of most people and families with disabilities. We question the policies that are thought to be positive but that in practice are disabling by ‘commission’ or ‘omission’.
Drawing on accounts by disability leaders, political representatives, bureaucrats, and professionals, disabled people themselves, and a close look at the disability movement in Uganda over more than ten years (2005 to 2019), this chapter elucidates the processes of implementing disability policy agendas in one exemplary African country.