Dr Michelle Botha is a senior lecturer in the Division of Disability and Rehabilitation Studies at Stellenbosch University.
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Working in disability and rehabilitation studies as someone who is disabled, you have to get used to encountering evidence that you, and people like you, are likely to have problems, encounter problems and even, though less frequently nowadays, are problems.
Statements like “Evidence shows that youth with visual impairment are more likely to be emotionally maladjusted than their sighted counterparts”, or “Evidence suggests that people with visual impairments are less likely to be employed”, become so commonplace that you barely notice them washing over you.
Perhaps you utter a silent prayer of thanks that, despite being severely visually impaired, you are gainfully employed while firmly deciding that you are not emotionally maladjusted. What goes unsaid is that being constantly confronted with evidence on exclusion, neglect and abuse of people with disabilities, when disability is a close and lived reality, does take its toll. This is something that should also be top of mind as we mark Casual Day on 4 September.
Several years ago, while teaching on one of our postgraduate programmes at the Division of Disability and Rehabilitation Studies at Stellenbosch University, a colleague asked me to have a chat with a student who appeared to be struggling. Though clearly capable, she was not meeting deadlines or turning in work to the expected standard. As I asked her over the phone about what was going on, her voice began to tighten.
I could hear that she was crying. She told me that she was a mother of a child with a severe intellectual disability – one of the reasons she was interested in the programme in the first place. She explained how the research papers she encountered during the course felt like being punched in the gut. Almost everything she was required to read detailed how terrible her child’s life was likely to be, and worse, that she, as his primary caregiver, might be partly to blame.
Much of what she read is true. People with disabilities, especially in low- and middle- income countries, are more likely to be less educated and unemployed, have fewer social connections, poorer health and die earlier. Caregivers of people with disabilities often lack information, guidance and community support, which sometimes leads to ambivalent feelings towards their loved one and poor decision-making.
What we certainly do not need is toxically positive disability scholarship which glosses over the ways in which disabled people are systematically failed. All this does is give society a free pass while calling on people with disabilities to show impossible levels of resilience to “triumph over adversity”. But, we do need to consider carefully how disability tends to be uncritically constructed as problematic, and how our thoughts and actions towards disability tend to be orientated – whether towards problems or solutions.
People with disabilities have long been viewed as social problems. Historically, these problematic people were dealt with via eugenic violence and incarceration in institutions. While it would be wonderful to write these practices off to the bad old days, the global pendulum swing towards fascism, cutting social protection spending and suspicion of diversity-promoting interventions, not to mention the several public statements disparaging disabled people made by a certain Donald J. Trump, the bad old practices can feel a little too close for comfort.
Twentieth century developments in medicine and the rise of the rehabilitative disciplines suggested that there may be another way. Instead of exterminating the problem, we could fix the problem through curing it, or normalising disabled people’s bodies with prosthetics, devices and techniques that they can adopt to fit in, preferably while causing little disruption or discomfort to society.
Disability studies emerged as an academic discipline in the late twentieth century alongside a global growth of disabled people’s activism. These developments were founded on a conceptual shift which suggested that “the problem” is not located in the bodies and minds of disabled people, but rather in the systems, structures, practices and attitudes of societies unwilling to welcome diversity.
Yet, the framing remains problem-focused. Though contemporary disability and rehabilitation studies adopt a societal focus, too often our work treads the well-trodden path, describing problems with little to say about realistic, sustainable and contextually relevant ways to address these. This leaves people like our student, who lives with disability every day, to confront the tangled web of problems surrounding her child alone. Although her child may not be constructed as a problem, actual solutions to untangle the web are few.
Solutions-focused disability research, advocacy and intervention must take a systems approach, be led by people with disabilities, and be sensitive to their contexts. Inclusivity measures without this basis risk requiring people with disabilities to transform themselves to fit into an unwelcoming society on its terms, rather than compelling social change that recognises disability diversity as an opportunity and not a threat. Centring disabled lived experience acknowledges that bodies and minds can struggle, hurt, lose function, fail in all kinds of ways, and show great resilience, but these have no bearing on our deeply human abilities to care, love, create and connect. Solutions-focused thinking must be contextually relevant – there is nothing worse than being told about a wonderful intervention, device or practice that is utterly unfit for the socio-cultural and economic context in which one lives.
As we celebrate Casual Day, let’s also remind each other that the human differences embodied by people with disabilities are perhaps better constructed not as problems, but as differences that can drive the development of communities that are more flexible, innovative, welcoming and interesting, in fact, more human.
Dr Michelle Botha is a senior lecturer in the* Division of Disability and Rehabilitation Studies at Stellenbosch University.**
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