Disabling Africa: the power of depiction and the benefits of discomfort

Abstract

Despite the fact that the vast majority of disabled people live in low and middle-income countries, the field of disability studies is dominated by research on disability in wealthy contexts. Although there are encouraging signs of this pattern changing, there are challenges to researchers about how to represent and think about disability in African contexts, and it is difficult not to reproduce unhelpful stereotypes. We use the example of an encounter we had with an expatriate Deaf South African to reflect on the complexities of representation facing people working on disability issues in Africa and what has been termed the Global South. We suggest that an appreciation of the productive value of discomfort about issues of representation may help move the field forward.

Keywords:

• Africa
• South Africa
• disability
• representation
• discomfort
• discourses
• decolonization

Recently, we were collecting data for a project about emigration from South Africa and care issues. During the course of our research we met a Deaf woman, now living in a high-income country, who had a great deal to tell us about her experiences of Deafness in South Africa compared with the country which she has now made her home. She described in some detail the range of services available for her in her adoptive country, services which enable her to participate fully in society. These include extensive free sign language interpreting services and an online Skype service whereby she can have telephone calls voiced on her behalf. The services have enabled her to develop professionally and also to take a more empowered role within her nuclear family and her extended family.

In speaking with us, she commented that although she misses South Africa – ‘South Africa is in my blood’, as she put it – it is also the case that she does not wish to return, because of a lack of services. As she puts it, ‘When I go back to South Africa I feel disabled.’ Speaking about her Deaf friends who have remained in South Africa, she comments: ‘I think they are in the wrong country.’ Our participant, of course, is entitled to her views, and we have no reason to doubt or question her experience. But we were discomforted by what she told us, and we believe that trying to understand our own discomfort may be helpful to an important project in disability studies to which we hope to contribute.

Before we discuss our own discomfort, we provide a bit of background. Along with many others, we have noted the extent to which disability studies is dominated by research and practices which come from what has been called the ‘Global North’ – what other people would call high-income countries (notably those in North America, Europe, and Australasia) (Swartz 2014). In this regard, disability studies shares characteristics with many other disciplines – the overwhelming majority of them, in fact. But we are not the first to note that not only do most disabled people in the world live in the Global South (or low and middle-income countries). It is also probably the case that, for many forms of disability, there are more disabled people within any given age group proportionally in poorer countries (World Health Organization and World Bank 2011), largely because of social conditions including poverty, environmental degradation, violence and war, higher rates of road traffic accidents, decreased access to health care and rehabilitation, infections, parasites, poor nutrition, lack of access to education, and so on. If anything is a majority world issue, disability is.

There are also a range of beliefs about how disabled people are treated. The continuing violence against and even murder of people with albinism in parts of Africa (Brilliant 2015) is an outrage which should worry any person serious about disability rights and human rights. We should be concerned about violence against people with disabilities, virgin cleansing myths leading to the rape of disabled women (a product of another myth about disability – that disabled people are not sexual), the harmful effects of witchcraft beliefs, and so on (Groce and Trasi 2004). But it is also true that talk about disabled people being badly treated on our continent and in other poorer parts of the world fits discursively into a dangerous set of stereotypes about, in our case, Africa. In relation to Africa and some of its countries, the term ‘basket case’ has been used (Moran and Pitcher 2004) (in itself an unforgivably disablist appellation), a site of primitive and harmful beliefs in witchcraft and other superstitions, a harsh place where life is cheap. Some disability scholars, notably people like Ingstad (1999), have worked hard to trouble and to question this depiction and to suggest that, just as some have argued that there is little evidence for rape on the basis of virgin cleansing (Groce and Trasi 2004), it is a myth that people in Africa abuse disabled people more than people in other places do. The other side of the ‘abuse’ trope, of course, is the romantic idealization of Africa as a place which cares for all disabled people, where disabled people are accepted and always find their place in a local prelapsarian economy of care. The debates about the question of whether people with serious psychosocial disability do better long term in poorer than in richer countries, despite dramatically poorer access to formal biomedically based health care, are important substantive debates, the answers to which must be informed by empirical data. It is also probably true, however, that some of the heat generated on both sides of the debate is infused by differing reactions to and investments in the image of the simple, happy native, an image as racist as the image of the marauding primitive.

Layered on to these scenarios affecting how we feel we should view and represent disability in Africa is a growing debate about questions of decolonization. For the past few years, universities in South Africa have been convulsed by student protests about a number of issues, including the question of student fees (Hodes 2017). Central to the debates engendered about the protests is a call for decolonization of the curriculum. This call for decolonization is not uniquely South African, nor has it been absent from disability studies globally (Imada 2017), but the issue takes on a particular significance in a South African context in which racial inequalities persist more than 20 years after our country became a democracy. The decolonial debate in South Africa is highly racialized partly because of the apartheid past (see Durrheim, Mtose, and Brown 2011).

Many South Africans of all races have left South Africa for wealthier countries, for a range of reasons – the high crime rate and better economic opportunities elsewhere being two of them. A common perception is that part of what pushes some white South Africans to emigrate is racism and a belief that black Africans are unable to govern properly. It is of course very difficult to establish the extent to which this is true, as racism is not something many people will admit to, but we believe that some white emigrants from South Africa are indeed racist. It is also the case that given South Africa’s history, it is inevitable that interactions in our country are refracted and interpreted through the lens of race, regardless of the intentions, conscious or unconscious, of those involved (Durrheim, Mtose, and Brown 2011). So, when we are told by a white ex-South African that services for Deaf people in her adopted country are better than those in South Africa, and that Deaf people who remain in South Africa ‘are in the wrong country’, as she puts it, we are engaged in a moment of performance, not just of talk about Deafness, disability, and services in various countries, but also of South African whiteness.

This is disturbing to us for a range of reasons, not least of which is our commitment to developing better conditions for disabled people in South Africa and elsewhere on our continent (Swartz 2014). It also, to be frank, interferes with our own face work – our attempt to present ourselves in a particular (and favorable) light regarding disability rights activism in the academy. But we wish to suggest that the discomfort here, as elsewhere, is not only negative and unpleasant (which it is), but also that it is productive in terms of how to think about disability provision in low-income contexts (see Zembylas 2015). There are at least three productive lines of enquiry here. First, it is important to acknowledge the validity of what our participant says. The level of services she experiences does enable something which is not available on our continent. We cannot see anything wrong in viewing this level of provision in aspirational terms – it would be counter-productive to do otherwise. Second, our participant’s comment that Deaf people who live in South Africa are ‘in the wrong country’ should lead us, and other researchers, to explore the extent to which the principles behind the services she receives (not the services themselves, as they are very expensive) can and are being applied in lower-income countries. We need to know more about how, in conditions of poverty, maximal inclusion can be achieved. This is clearly part of an ongoing project to which many scholars have contributed (MacLachlan 2014). Thirdly, and crucially for this commentary, we need to understand in more depth the complex roles and positionings of many writers of privilege about disability in the majority world. What is at stake in terms of how disability is presented? What are scholars with and without disabilities saying about ourselves when we speak about the abject disabled other, or, equally, when we point to examples of good disability policies and practices?

A key contribution of disability studies to academic practices is its insistence on the value of insider narratives for understanding the issues at stake – the slogan ‘nothing about us without us’ has profound implications for methods and for knowledge (Goodley et al. 2017), for what kinds of data we take seriously. But as the field moves, appropriately so, to a more global politics of action, disability scholars need to appraise more carefully the investments of the more powerful (which includes us as non-disabled white South Africans) in how the less powerful are presented and called upon to participate in the production of knowledge of disability. It is important to interrogate what these engagements are doing, and how they are being used, to enhance the power and self-presentation of privileged researchers.

It would be both naïve and incorrect to suggest that all people from positions of privilege who engage with disability issues are doing so for cynical reasons and only to burnish their own reputations. But our experience with our participant of being interpellated into a discourse of South African (and African) abjectness, and our visceral resistance to this, has thrown light on our own investments of wanting to be positioned as outside of this discourse – as on the side of the angels when it comes to engagement with disability issues in Africa. These investments, we suggest, need to be recognized and interrogated. Whenever researchers speak about the ‘other’ – the disabled other, the African other, the other in the Global South, to name just a few – we are speaking also of ourselves, and we are using the other to present ourselves in particular ways. This is in the nature of presentation as a discursive enterprise and cannot be avoided. But we suggest, from our own experience discussed here, that this is something to be acknowledged and thought about as an aspect of legitimate disability studies practice.

Disclosure statement

No potential conflict of interest was reported by the authors.

Funding

This work was supported by the National Research Foundation [grant number MARC015].