The Social Model of Disability – our lives in our hands

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Emmeline Burdett discusses an article by Charles Josefson, an autobiography by Alison Lapper and the writings of Tom Shakespeare and Hugh Gregory Gallagher, to give an explanation of the importance of the Social Model of Disability in understanding society’s role in the construction of disability.

Marc Quinn Alison Lapper Pregnant

Marc Quinn Alison Lapper Pregnant. Photography Gallery via Flickr used under Creative Commons licence (CC BY-NC-ND 2.0).

In his recent Disability Arts Online article ‘The Fourth Plinth: Raising the Issue of Disability’, Charles Josefson discussed Marc Quinn’s sculpture of the disabled artist Alison Lapper, exhibited on the Fourth Plinth of Trafalgar Square between 2005 and 2007, and argued that Quinn’s understanding of the nature of Lapper’s difficulties was too ‘medical model’.

In other words, Quinn believed that Lapper was ‘heroic’, because of the extent of her physical limitations, rather than because of any failed interaction between Lapper and the society in which she lives. This made it appear that Lapper exists outside society, and that her difficulties have never had any societal component.

In his article, Josefson quoted Lapper as saying that she could not possibly afford to produce an enormous marble sculpture of herself, and he pointed out that the things that Lapper could say about herself would be more authentic than Quinn’s sculpture, in which Lapper and her life were refracted through the prism of Quinn’s ‘medical model’ gaze.

So, in Josefson’s article, then, the social model of disability is expressed by highlighting the difference between Quinn’s success, and his platform telling people what he thinks about Lapper, versus mainstream society’s apparent disinclination to find out what Lapper thinks about herself.

The Social Model of Disability was developed by UPIAS (The Union of the Physically Impaired Against Segregation) in their 1976 publication ‘Fundamental Principles of Disability’, and one of the most important things about it was the distinction it made between impairment, which was defined as ‘lacking part of or all of a limb, or having a defective limb, organ or mechanism of the body’, and disability – ‘the disadvantage or restriction of activity caused by a contemporary social organisation which takes little or no account of people who have physical impairments and thus excludes them from the mainstream of social activities’.

Five years later, the organisation Disabled People’s International widened the definition to include people with sensory, emotional and cognitive impairments. This is an important distinction, because, in mainstream discourse, it is still very common to find no distinction made between the effects of impairment (e.g. pain, fatigue or nausea), and the effects of disability (e.g. being treated differently or disadvantageously; being unable to attend a social event due to it being held in an inaccessible building).

This is no mere semantic difference, but has an impact on how we think about a variety of topics relevant to disabled people – anything from social life, through life prospects and ambitions, to questions about life and death, and about what society should look like. This is particularly important, because mainstream debates about disability are still all-too-often dominated by the idea that ‘progress’ is achieved by eradicating impairments, not by building a more inclusive society in which everyone is taken account of.

Marc Quinn’s website has a section in which he discusses the rationale behind his decision to portray Lapper. It is clear from what he says about her that he does not see any interplay between Alison Lapper’s impairments, and her experiences in society. He states that Lapper is remarkable because she has

Overcome her own circumstances through … ‘a different kind of heroism’.[1]

Just in case there is any doubt in the reader’s mind that Lapper’s situation is a purely personal one, Quinn goes on to describe Lapper as

Someone who has overcome their own circumstances rather than conquered the outside world.[2]

Quinn’s insistence that there could be no societal element to any of Lapper’s experiences is a misunderstanding that persists not just in mainstream society, but also within disability studies itself.

The academic Tom Shakespeare has long been a critic of the Social Model of Disability, and his criticisms, as expressed in his book ‘Disability Rights and Wrongs Revisited’ (Routledge, 2006) stem largely from what he argues is its inflexibility, which renders it inadequate for real-life situations.[3]

Shakespeare gives various examples to illustrate his point, and many of these hinge on the difficulty of separating impairment (a person’s physical, cognitive or psychological condition) from disability (the social consequences of living in a society in which these are not the norm). It is largely for this reason that Shakespeare denies that disablism is on a par with racism, sexism and homophobia.[4]

He gives various examples of disability activists and academics who have, for ideological reasons, described impaired individuals in a way that suggests that their impairments did not really exist, but were something which society had imposed upon them.

Shakespeare quotes, for example, references to ‘perceived impairments’, and considers the term ‘survivors of the mental health system’.[5] This last is one of the most problematic areas of Shakespeare’s book, as it assumes, without really investigating the matter, that attitudes towards, and treatment of, mentally ill people, have always been benign.

Shakespeare’s comments are also directly opposed to those made by the historian Hugh Gregory Gallagher who, in his book ‘By Trust Betrayed: Patients, Physicians and the Licence to Kill in the Third Reich’, wrote

There can be no doubt that the way a society perceives and deals with a handicap is a major factor in determining how disabling – in a real sense – the handicap will be.[6]

Like Gallagher, those who formulated the social model of disability recognised that all impairments are experienced within a social context.

Indeed, we can see that Jofeson and Quinn’s views of Lapper are diametrically opposed. Quinn insisted that Alison Lapper was ‘heroic’ because she had transcended her own impairments (with, by definition, no societal problems in sight). Josefson argued that the inequalities between Lapper and Quinn – which operated to Lapper’s disadvantage – showed that Lapper, as a disabled person, was at a disadvantage in comparison to Quinn, and that these disadvantages were due to the disinclination of mainstream society to find out anything about Lapper from Lapper. Though this is important, it is not the whole story.

Alison Lapper’s autobiography, ‘My Life in My Hands’, published in 2005, details a large number of experiences which are either obviously not a direct result of her impairment, or call for further discussion. One of these experiences is Lapper’s abandonment by her mother, who subsequently reappeared as a disconcerting presence in Lapper’s life.

Lapper does not shrink from showing how difficult and upsetting it must have been for her mother, who spent the first days of her daughter’s life alone in hospital (apparently locked in her room) being drip-fed comments such as that her baby was ‘deformed’, being advised that she should choose a name quickly as the baby was not expected to survive, and that her daughter should be consigned to a state institution and forgotten. Perhaps most significantly of all, Lapper’s mother seems to have been given no emotional support whatsoever.[7] As Lapper makes clear, this was not just something which happened in her own case, but

In 1965 it was thought that disabled children shouldn’t live at home with their parents. It was better to put them away somewhere where they could be properly taken care of and there was little help to keep children at home. In truth, it was the parents who needed the help more than we did or, at least, just as much. And, of course, they didn’t get any. No counselling, just silence.[8]

It is rather hard to see how one could avoid viewing any of these matters as having a strong societal component. Lapper recognizes that her mother’s traumatic experiences in the early days of Lapper’s life will have made it extremely difficult, if not impossible, for her to regard her daughter in a positive light.[9]  Of course, while it is not possible to tell exactly what Lapper’s mother’s attitude to disability would have been like without these experiences, it is certain that they did not help.  The recommendation that Lapper be placed in an institution (and thus erased from her own family) had a similar effect upon her other relations.[10]

It is unsurprising that many disability scholars and activists have written extensively about institutionalization and the problems it causes. In her seminal 1991 book ‘Pride Against Prejudice: Transforming Attitudes to Disability’, Jenny Morris considered Miller and Gwynne’s 1975 report into institutions for disabled people and pointed out that almost every one of Miller and Gwynne’s conclusions was open to at least one completely different interpretation.

In particular, Morris considers Miller and Gwynne’s pronouncement that institutionalization was a type of ‘social death’.[11] By this, Miller and Gwynne meant that an individual who had entered an institution had been written off by mainstream society.[12] As Morris demonstrated, however, this ‘social death’ was actually brought about by the failure of mainstream society to meet the needs of impaired people, who then became a virtually invisible sub-group, whose behaviour and feelings could be pathologised. It is not hard to see that it was exactly this problem which those who formulated the social model of disability had in mind when they made particular reference to ‘contemporary social organisation’, which excludes disabled people.

As well as the problems created by institutionalisation identified above, Lapper’s own experiences, as detailed in her autobiography, show that, in many ways, Lapper and the other children with whom she lived were denied a chance to be children and to experience a proper childhood.[13]

Lapper writes about her time in the various sections of a residential children’s home, where it is clear that she and the other children were viewed primarily as defective non-disabled people, not simply as children. For example, the home had a workshop in which many unsuccessful attempts were made to ‘normalise’ the children by getting them to use unwieldy prosthetic limbs.

In the early years of Lapper’s life, these attempts were led by what the home’s staff thought that Lapper and the other children in the home should require, rather than what they themselves would actually find helpful:

I think what would have really helped all of us would have been something none of the adults at the home could bring themselves to do: listen to what we had to say and try out some of our ideas as well as their own. We were the ones with direct experience of how our limb-deficient bodies worked and understood best how to use our bodies to do the things they wanted us to learn how to do. [14]

Lapper also writes about how she and the other children were treated as medical curiosities:

A nurse would help me up on to an examining table, where I would lie naked or sometimes with just my knickers on while a group of ten to fifteen older medical professionals would make a circle around me. They would then poke this part or that part or rotate another part … They rarely addressed me and I could tell that I was just an object of curiosity for them, nothing more … We somehow weren’t quite human enough to be asked if we were happy to be sprawled naked on the table for examination by the medical profession. [15]

This article has given a flavour of the ways in which Marc Quinn’s assessment that Alison Lapper’s only problems are those caused by having an impaired body, is incorrect. I hope this has made it easier to think in more general terms about the social model of disability and how it is still very pertinent to the everyday lives of disabled people.

[1]  http://marcquinn.com/artworks/alison-lapper
[2] Ibid.
[3] Tom Shakespeare, Disability Rights and Wrongs Revisited (2nd edition), (London: Routledge, 2014, 20.
[4] Shakespeare, Disability Rights and Wrongs Revisited, 28.
[5] Ibid.
[6] Hugh Gregory Gallagher, By Trust Betrayed: Patients, Physicians and the License to Kill in the Third Reich (New York: Henry Holt and Company, 1990), 25.
[7] Alison Lapper, My Life in My Hands (London: Pocket Books: 2006, 14 – 17).
[8] Ibid, pp. 19 -20.
[9] Ibid, 17.
[10] Lapper, 17.
[11] Ibid, 132.
[12] Quoted in ibid, 132.
[13] Lapper, 24.
[14] Lapper, 37.
[15] Lapper, 26.