Decolonising disability
MOST disability literature has arisen from the West, but do people with disabilities in African countries share the same ideas or experiences of disability?
We need to think very differently about disability, we need to ask how people in different parts of the world understand disability from their own perspective (Meekosha, 2011).
The social model of disability which has thus far made a great impact in the field of disability was formulated in the 1970s by a small group of activists from the British Union of Physically Impaired against Segregation (Shakespeare, 2006, 2013). Such disability activists were challenging the supremacy of the medical model of disability whose focus was on the biological nature of disability.
The British born social model is esteemed for highlighting the fact that the answer to the disability problem did not lie in the narrow medical curing of impairment, but from attaining change at family, community and societal levels, given that disabled people live within those social organisations. Whilst the development of the social model of disability resulted in the moving of disability from the traditional medical landscape to a new socially oriented territory, such a move occurred in a Western context.
The reality is that the social model of disability is an urban model of disability which was crafted and upheld by disability theorists who live in urban settings of the West (Hammell, 2006). Whilst I embrace the emancipatory and participatory tenets of the social model, I question its applicability in African contexts, and particularly in rural settings.
The real experiences of disability in the rural areas of Africa are characterised by among other things, unpaved roads, mountains, sand, hills, rough ground and mud. Yet, the concern of Western disability activists is in part on staircases, an issue which may not be a priority for people with disabilities in rural African settings.
The reality is that between 80 percent and 90 percent of people with disabilities live in developing countries and they belong to an underprivileged status, which results in them having limited choices in relation to where and how they can live (Avery, 1994, Hershey, 2001). Such people are disadvantaged at both economic and social levels, to the extent that perhaps all that some of them ever know about is material lack (Thomas, 2006).
Unconscious of such reality, the 1976 British Union of Physically Impaired against Segregation policy statement cited among other things, outdated disability aids and kits, inflexible factory and office working patterns and staircases, as some of the key challenges faced by people with disabilities (Shakespeare, 2013).
The barriers presented by such challenges in the West may be different from those that are confronted by people with disabilities in African countries. I, therefore, question the social model’s over-emphasis on the subject of environmental barriers and its apparent avoidance of cultural issues.
The recognition that societies have different ways of understanding disability, influenced at most by their cultural belief systems, is of paramount importance. For example, within traditional African contexts, proverbs generalise a community’s experience, thereby providing an understanding of attitudes of society towards disability (Kisanji, 1995).
For example, the proverb that warns people against laughing at a disabled person is common in most sub-Saharan African countries. In the DRC, the proverb “tosepanga lemene efile kiakupanga” (don’t laugh at the disabled person, God keeps on creating you), means that if you laugh at a disabled person you may one day lose an eye or you can still break a leg.
Such a proverb resonates with the Zimbabwean Shona proverb “seka hurema wafa” (laugh at disability after you are dead), meaning that even if you are not disabled today, you may still acquire disability in your lifetime. The same proverb is common in Tanzania and in parts of Kenya.
The importance of culture in the social model of disability could, therefore, be reinforced by highlighting the fact that central ideologies of any given culture are constructed in such a manner that they end up becoming what Hammell (2006) calls “common sense”, “natural” and “normal”. Such normative cultural “scripts” influence the beliefs that inform people’s behaviours and the manner in which they conduct themselves.
Some African communities believe that the reason why some children are born with albinism is because their mothers where intimate with a white man or a ghost (Haihambo & Lightfoot, 2010).
Whilst such views may fit in with the barriers that are cited by the social model of disability, it is evident that these kinds of barriers become different in accordance with context.
Ignoring local ways of understanding disability is ineffective, the risk is that people with disabilities in African settings may continuously consume imported Western models of rehabilitation which may not do much to improve their situation, considering the reality of contextual differences.
Some researchers have noted that Western models of disability or rehabilitation are commonly imposed on developing countries by international experts and donor agencies (McConkey & O’Toole 1995).
That is so because most national budgets in developing countries cannot afford to build, equip and maintain rehabilitation centres or to hire and pay qualified staff. It is, therefore, not surprising that local rehabilitation models turn out to be a duplication of those that are found in Western countries.
In addition, many people in developing countries often receive scholarships to study and train in Western countries, albeit in contexts which are very different from the ones that are back at home. At the end of their studies, such scholars are usually not well equipped to address the local needs of disabled people, as a result they find the idea of immigrating to other countries attractive (McConkey & O’Toole (1995).
The few qualified rehabilitation professionals that remain will tirelessly work to implement the uncensored Western rehabilitation models, and as a result tens of millions of disabled people in developing countries receive no meaningful assistance (McConkey & O’Toole 1995).
Way forward
It’s “nice” to attend international conferences and to argue about issues in conference halls, but unless we learn to determine what works or what does not work within local contexts, we are bound to fail.
Whilst it is a fact that some disability projects may depend on overseas funding, it is critical to ensure that local realities are reflected in project planning, so as to merge the requirements of the funders and the relevant needs of local people (McConkey & O’Toole 1995).
But how do we know the real needs and challenges of people with disabilities if we do not conduct research that is grounded in the African context? We end up with cosmetic knowledge which we then use to invest in applying for donor funding and to ultimately deliver meaningless community development projects.
Let us acknowledge that cultural knowledge provides a significant base upon which community development interventions can be based. For example, as we undertake work in special education, we can teach children with disabilities to use local proverbs to counter negative attitudes (Devlieger, 1999).
Even at policy level, let us learn to identify positive cultural elements that can be used to enhance the inclusion of people with disabilities in all facets of life.
Other than that, African people with disabilities will remain consumers of imported Western rehabilitation models, which may to some extent be contextually irrelevant. In any case, by stressing cultural sensitivity, the United Nations acknowledges the significance of identifying local knowledge and exploring its possible applications in the organization of services.
Dr Christine Peta is a public health care practitioner who, among other qualifications, holds a PhD in Disability Studies. Be part of the international debate on how best to nurture a society which is more accessible, supportive and inclusive of disabled people. Partner with Disability Centre for Africa (DCFA) on WhatsApp 0773699-229, website www.dcfafrica.com and e-mail; dcfafrica@gmail.com