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.
Following on from last week’s post, Sarah imagines how these figures would defend and describe their alternative models of disability, including the Independent Living Model and the Feminist Social model of Disability.
Kasnitz: Perhaps instead I could pose an alternative paradigm: instead of attempting to reintroduce a pro-medical stance into the social model, we could instead focus on the Independent Living Paradigm. As described in mine and Richard Shuttleworth’s work, the rehabilitation model is one that aims for individuals to learn to manage and compensate for their impairments; the Independent Living Movement, however, repositions this and instead focuses on improving environments, attitudes, interpersonal exchanges, and the process of rehabilitation.[1] The Independent Living Movement is a potential way of addressing medical concerns while also having strong compatibility with the social model, by manner of emphasising individual choice and access to resources[2]. This model also strongly encourages community building amongst disabled people, as peers and as role models. This not only allows disabled people to have a real network with which they can share advice for how to manage stigma and discrimination, but enables them to build strong interpersonal links that they may not otherwise be able to do as they are excluded from main society. I have personal experience with Independent Living Centres, having directed one back in 1985, and I can attest to their efficacy[3]. There is also an ethnographic study from 1991 that supports the benefits of this cohesive social environment and subsequent exposure to role models[4]. Not only on an individual level, but the very concept of the paradigm has also facilitated a civil rights movement that achieved legislative change by creating a shared identity amongst every disabled person[5].
Goffman: While I agree that a strong sense of shared identity can only be beneficial, I am concerned that the Independent Living Centres and other facets of that paradigm may serve to further increase stigma towards the disabled – stigma does not just affect those othered by physical differences or perceived character flaws but to so-called tribal groups[6]. The idea of separating disabled people into their own enclaves of society may be hurtful in the long run.
Wendell: I disagree, Goffman. There is nothing more understandable than the desire for people within marginalised groups to want to find support from those who understand the most. I also find the idea that this will contribute to stigma to be rather naïve – it’s clear that the social influence encouraged by Independent Living has already enacted lots of positive change, and you can easily compare it to other movements for civil rights where there has only been strength in numbers[7]. One not insignificant criticism I have of Independent Living though, Kasnitz, is that it lacks perspective. While it is easy to support white, middle class people as part of this model, the world is made up of a hugely diverse range of individuals and groups. There are many cultures in which living independently is in itself undesirable, and other groups of people – particularly mothers and other women – not only have to live independently themselves but care for others[8]. Desiring independence is entirely natural and should be encouraged, but we should also foster an environment whereby help is readily given to those who need it. And furthermore, why should the focus be on encouraging disabled people to live independently when pain and disability are near inevitable stages of life[9]?
This is why I support an explicitly feminist social model. In the way that a woman is only disadvantaged for being female if the world is designed for men, a disabled person is only disabled in a world designed for the able-bodied[10]. This is all covered under the basic social model. However, I would go further to state that the Western patriarchal notion of bodily control as a virtue – particularly desired of women – directly impacts cultural negative attitudes towards disability and thus the stigma and oppression that disabled people face. Similar to what Murphy was talking about earlier, health and vigour are often considered moralistic qualities – someone who is chronically sick or tired must have done something to cause it[11]. This not only forges a barrier between the abled and the disabled, where able-bodied people falsely internalise the idea that if they behave “correctly”, they can avoid facing the fragility of their health, but also directly marginalises disabled bodies[12]. This often results in internalised oppression: shame, frustration, self-hatred[13]. Disabled women in particular suffer as their non-ideal bodies are seen as unfeminine and thus non-sexual, a failure not only in personhood but in womanhood[14]. All of these effects can be seen in a 2003 ethnographic study on Intimacy and family relationships of women with chronic pain[15]. To a greater extent, this lack of ability to control symptoms or disease progression in disabled or chronically or terminally ill patients directly leads to stigma in the medical sphere[16]. Also, it is of course this obsession with control that dictates who is or is not celebrated amongst disabled people – nearly always, disabled people who “overcome” their physical limitations and thus control their bodies once more are the ones who break into mainstream recognition. This is to the detriment of all disabled people – most disabled individuals will never live up to this standard and are implicitly blamed for that[17]. A feminist-directed social model would aim to challenge these thoughts, understand their specific impact on women, and thus would benefit disabled people as a whole.
Murphy: Perhaps alleviating my fear of relinquishing control would have encouraged me (and others like me) to seek help from neurologists earlier[18]. Not only that, but it may also reduce the number of misdiagnoses of somatic disorders in the face of unusual symptoms: the current attitude is that if the symptoms are not easily physically controlled, they must be controlled psychiatrically[19].
Jackson: You raise some compelling points, Wendell and Murphy. I would also like to raise the issue of gender bias within medicine as directly harming disabled women. Men and their bodies are considered the default for medical trials and treatment, and too often are women’s symptoms not taken seriously or misdiagnosed due to poor recognition of gender differences or sexist responses to women as they present with symptoms. This contributes to the prevalence of undiagnosed or misdiagnosed chronic health conditions in women[20]. A feminist social model would seek to better understand the lived and embodied experiences of disabled people.
Goffman: If the model is to adequately understand the embodied experiences of all disabled people, would a feminist social model even go far enough? A feminist model would help describe the material discrimination that disabled people face from a broader perspective, however, it continues to miss out on specifying that disabled people not only face discrimination but also prejudice from the stigma of being disabled[21]. This stigma affects how disabled people interact with others and thus how they live their lives. This leaves disabled people in a permanent state of limbo – and all the anxiety that entails – when interacting with others as there is always the underlying thought that, deep down, anyone they interact with may define them due to the stigma they carry as disabled people[22]. Where, in the feminist social model, is room for the frequent condescension disabled people face when they are lauded for simply carrying out basic tasks, or when a mistake or failure is explained as a symptom of disability[23]? There is also little nuance to consider that some disabilities are visible and some invisible, and with that comes all of the variation that entails when someone is known or perceived to have a stigma versus when they believe themselves to have a stigma but others do not recognise it[24]. Finally, this model does also not do an adequate job of explaining and understanding the mental impact of potential years of self-inflicted isolation on behalf of disabled people[25]. A truly encompassing model would do well to explicitly include all of the effects of stigma and discrimination amongst disabled people.
My thoughts: It seemed to me that the entirety of the panel found the social model to be basically adequate, if in need of updating in some areas. I found Jackson’s argument about chronic pain and fatigue to be the most critical of the social model and Wendell’s response to not be entirely convincing. Yes, pain may be an inevitable part of everyone’s life but chronic pain, fatigue, and disability has far reaching impacts that abled people do not experience, or truly understand. The later discussion led by Wendell on a feminist directed model was compelling and I am not sure I agree with Goffman that this would not fully encompass the effects of stigma. To conclude, I left this panel believing that while the social model has its flaws, with some feminist adjustments, and reference to Independent Living, it can represent most of the experiences and needs of disabled people.
References:
[1] (Kasnitz, 2001, p. 24)
[2] (Kasnitz, 2001, p. 24)
[3] (Kasnitz, 2001, p. 25)
[4] (Spencer, 1991)
[5] (Kasnitz, 2001, pp. 25-26)
[6] (Goffman, 1997, p. 205)
[7] (Ramirez, 1997)
[8] (Wendell, 1989, p. 118)
[9] (Wendell, 1989, p. 108)
[10] (Wendell, 1989, p. 109)
[11] (Wendell, 1989, p. 114)
[12] (Wendell, 1989, p. 114)
[13] (Wendell, 1989, p. 113)
[14] (Wendell, 1989, p. 113)
[15] (Smith, 2003)
[16] (Wendell, 1989, p. 114)
[17] (Wendell, 1989, pp. 116-117)
[18] (Murphy, 1987, p. 16)
[19] (Murphy, 1987, pp. 14-15)
[20] (Jackson, 2018, p. 6)
[21] (Goffman, 1997, pp. 205-206)
[22] (Goffman, 1997, pp. 210-211)
[23] (Goffman, 1997, p. 211)
[24] (Goffman, 1997, pp. 204-205)
[25] (Goffman, 1997, pp. 209-210)
[1] Quote from Wikipedia: referencing Fleischer, Doris (2001). The Disability Rights Movement. Philadelphia: Temple University Press. ISBN 1-56639-812-6.