Editor’s note:
The social model of disability is an ideology that states that disability is socially constructed. This effectively means that society establishes physical and cultural barriers, and these barriers are what prevent people with a physically impaired body from participating in society in the same way as everyone else. The social model has proven beneficial in many respects, “challenging discrimination and marginalisation, linking civil rights and political activism and enabling disabled people to claim their rightful place in society.”[1]
The social model of disability contrasts to the medical model of disability, which stipulates that disability is a product of medical problems, and has the potential to be cured.
This week’s post has been written by Sarah McKelvey, who has ADHD and has experienced physical disability in the past. Here, she imagines a panel discussion between experts in the field of disability:
Devva Kasnitz, an anthropologist specialising in disability, who was there to represent both her personal viewpoints and those of her colleague Russell Shuttleworth.
Aaron J. Jackson, an anthropologist specialising in disability who suffers from chronic Lyme disease.
Robert F. Murphy, an anthropologist who wrote about his experience with a tumour of the spinal cord.
Erving Goffman, a sociologist who wrote an influential book on stigma.
This imaginary discussion reveals some of the strengths, weaknesses and controversies embedded within the social model of disability. Does a model, which was developed in the 1970s, still hold water for disabled people today?
I attended a panel featuring some esteemed guests in the field of disability, who were assembled to discuss one thing: the Social Model of disability. I found this panel enlightening and this article features transcripts of what I believe to be a selection of the more pertinent discussion. It certainly left me with a lot to think about, and I will attempt to summarise my thoughts at the end of the piece – but for now, I’ll allow the panellists to have their say.
Goffman: One thing that the social model focuses on is that disability is the direct result of material discrimination due to a physically impaired body[2]. This leaves very little consideration for those with what are perceived to be “mental defects”, however these people may be just as stigmatised as those who are visibly physically disabled[3].
Wendell: Indeed, the social model separates out impairment and disability but perhaps struggles to precisely define impairment and how it specifically contributes to the marginalisation that creates disability. I would argue, however, that this is a good thing – disability is so varied both between individuals and across cultures that trying to find a precise definition is an exercise in futility and would exclude more people than it includes[4]. If one defines disability in terms of barriers to “normal” functioning, we allow for a sensitive cultural interpretation that remains relevant no matter which cultures disabled people are part of[5]. Socially constructing disability allows for the financial and social support that disabled people need to be considered a vital feature of a progressive society, rather than something individuals must face alone (or perhaps with familial support).[6] Returning to your point about invisible disabilities, though, while I do agree that the traditionally defined social model may be exclusive in those areas, to discount it entirely on this criticism would be throwing out the baby with the bathwater - only a small readjustment is needed to include these other groups.
Jackson: I think there is an elephant in the room that I must address: what the social model aims to do in its focus on the culture surrounding disability can intentionally ignore the embodied reality of pain and fatigue many disabilities bring.[7] In these such cases, the barriers are internal rather than external.
Wendell: That may be the case, but no life – disabled or not – is free of pain. Some sufferers of chronic pain promote acceptance of the pain as the path to living an enjoyable and peaceful life. For now, these chronic issues are outside of our collective and individual control.[8] Should the model not instead focus on acceptance of difference and the promotion of disabled people as all having individual strengths?
Kasnitz: Historically speaking, one of the impacts of the social model has been the demedicalisation of disability. This has brought many benefits, particularly the reframing of disability history from a medical history to one of social civil rights and life events – focusing on the social experiences of the disabled. Overall this has encouraged and supported disabled people’s continued fight for social advancement and against oppression. However, this has also been accompanied by an anti-medical stance by activists that has held us back from the discussion of medical problems[9]. This, I believe, is one of the major flaws of the social model. The embodied experience of disability necessarily involves the medical processes and realities of impairment and yet the social model eschews this in favour of defining disability purely through the discrimination and barriers disabled people face[10].
Jackson: I disagree with your characterisation of the anti-medical stance. The Western medical establishment is structured in such a way that the inherent incurability of most disabilities erodes doctor-patient relations, leaving doctors to deny patients’ symptoms and implicitly altering their experiences to fit their diagnostic criteria. This is in itself disembodiment[11]. I have personally experienced invalidation and a delay in diagnosis due to paternalistic attitudes. I have been interrupted, have had tests refused and symptoms denied. This is the unfortunate but inevitable consequence of the Western doctor-patient relationship and impersonality resulting from an overloaded, high-stakes system[12]. The anti-medical stance, therefore, is a necessity amongst disabled groups as a method of self-preservation against the gaslighting and paternalism many of us face in the medical sphere.
Murphy: I would tend to agree with Jackson, albeit from a different angle. The manner in which a sick or impaired person interacts with the medical establishment is thoroughly dehumanising. They lose their social roles, and thus a major part of their identity, to become a “sick person”, and these “sick people” must submit themselves entirely to the orders of doctors, lest they be considered selfish and unwilling to get better – their only duty. They must also be careful to perform sickness correctly: they must remain upbeat and cheerful while being in great physical pain so as to not seem ungrateful to medical carers, or to not make friends and families feel uncomfortable with this confrontation of their own transient health and mortality, among other things[13]. The hospital itself, (particularly long-term care facilities) almost becomes a “total institution”, isolating its patients from the current world and their prior lives, to make them think of themselves primarily as patients[14]. The desire to not have to perform sickness or impairment but simply to wholly experience it as is at the core of anti-medical stances and must be encouraged in order for them to be truly comfortable sharing their social and embodied experiences. The retention of identities and roles for those with long-term illnesses or mental conditions appears to be impossible when these people become part of the medical establishment.[15]
Criticisms of the social model of disability have led experts to develop alternative paradigms for disability including The Independent Living Movement and the Feminist Social Model of Disability. In next week’s blog post, Sarah imagines a continuation of this discussion, focusing on alternative models of disability.
References:
[1] Owens, Janine. "Exploring the critiques of the social model of disability: the transformative possibility of Arendt's notion of power." Sociology of Health & Illness 37, no. 3 (2015): 385-403.
[2] Abberley, P., 1987. The concept of oppression and the development of a social theory of disability. Disability, Handicap & Society, 2(1), pp. pp.5-19.
[3] Goffman, E., 1997. Selections from Stigma. In: The Disability Studies Reader. s.l.:Routledge, pp. 204, 211.
[4] Wendell, S., 1989. In: Toward a Feminist Theory of Disability. s.l.:Hypatia, pp. 107.
[5] Wendell, 1989, p. 107
[6] Wendell, 1989, p. 110
[7] Jackson, A., 2018. An anthropologist's view of Lyme disease and suicide. lymedisease.org: advocacy, education & research. p. 8.
[8] Wendell, 1989, p. 115
[9] Kasnitz, D., 2001. Anthropology and Disability Studies. In: Semiotics and Dis/ability: Interrogating categories of difference. s.l.:SUNY Press, p. 24.
[10] Abberley, 1987
[11] Jackson, 2018, p. 2