The Social Model: Sleeping on the Job?

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Dr. Jo Ferrie, Lecturer Social Research Methods, University of Glasgow and Strathclyde Centre for Disability Research, UK

I am not long back from the stimulation and challenges of the Disability Studies Conference in Lancaster, UK and it’s apparent that the social model is alive and well. It stands as a mighty sword of justice and has certainly been used well to effect change and bring ground breaking policy reform. But its focus remains on public citizenship. Its focus remains on removing barriers, be they environmental, physical, constructionist, attitudinal or structural: its influence is social.

While these forms of emancipation are vital, they’re not reaching all disabled people. Because many disabled people are disabled in their private spaces. Let me give you an example.

For the past two years, I have been involved in a research project following 40 families living with Motor Neurone Disease (MND) in Scotland. This is a condition that behaves as a chronic illness until it becomes a terminal illness. Most people with MND die within 18 months of being diagnosed. It is a brutal condition causing progressive muscle weakness affecting the mobility, bulbar and breathing muscle groups.

I heard claims from some attending the Lancaster conference that terminally ill people are not disabled. I am horrified at this. The people I spoke to during the project met Mike Oliver’s definition of a disabled person. They had an impairment, they were accessing services designed for disabled people and they self-identified as disabled. They certainly were disabled. They did not, however, fit the neat ‘disability has nothing to do with the body’ mantra of the social model. A disability studies that dismisses the eligibility of some in preference to preserving the sanctity of a model, is not MY disability studies. I say people are more important, and if their experience means that the social model becomes limited then our job is to engage with how the model can evolve to include these people. Leaving them as outsiders is not an option. 

One woman I met epitomises my point. She is two years older than me (late 30s, i.e. VERY young). She has been married for four years and has two lovely dogs. She chose the name Rosie to be used in publications like this one. The impairments Rosie has experienced have become progressively severe over the 12 months that I have been visiting her and her husband. For 8 of those months she was fighting against an Occupational Therapist (OT) from a Disability Team who was trying to get her to use a hospital bed. This would allow for a mattress to be used that would help her husband turn her through the night. It would help carers come in and dress and wash her when she became unable to complete her own personal care. It would, the OT said, be more convenient for everyone to get the bed in now. This removal of control from the life of the disabled person is surely a familiar story to us?

But ‘no’, says Rosie. ‘Because I’m married. I share a bed with my husband’.  The first OT was impatient and became hostile at Rosie’s resistance to the hospital bed. Rosie asked for a different OT. I think the second OT was sensitive to Rosie’s argument, but MND was not. Not long before my last visit, the hospital bed was installed. A new mattress that had air pumped through it reduced the need to be turned, or shifted in bed during the night. ‘Has it helped the pain?’ I asked.

Rosie hates it. It does help the pain. She is sleeping for more than a couple of hours in a row most nights now. Her husband is also benefitting from the increased restfulness, no longer waking every 2 hours to help his wife turn. Nevertheless, he hates the bed too. Because when they wake, in the middle of the night, he now in a single bed about 40 centimetres lower than his wife’s, they are alone. Rosie hates not being able to feel her husband’s body heat. It makes her feel single. It makes her feel alone. It has triggered a depression in her that she is struggling to cope with. The disappearance of the marital bed has stolen their private and intimate space and Rosie and her husband feel more like their relationship now is characterised as ‘disabled person and carer’ rather than husband and wife, even though his caring responsibilities are fewer in number.

 The OT, thinks the solution is working. Anyone that really listens to Rosie, can see that it is causing a far more existential problem. Her body is disabling her. She is losing her status and her identity. Not because society is stigmatising her, but because Rosie is now corporeally removed from the experiences with which she identifies herself. And without this, she has no inclination to go into society. She’s losing her concern over citizenship – a belonging in public is secondary to belonging in her own home. Her most private space has been violated. She faces a barrier to lying at night in her marital bed, feeling the warmth from her husband.

 I’m not being sentimental. There is a valid and crucial point to be made here. As the social model can only achieve equality of opportunity and experience once we’ve left home, how do we achieve equality of opportunity or experience at home? And shouldn’t this come first? This though requires a fundamental re-writing of that social model mantra. The body does disable. To emancipate then, the body must be acknowledged as we, disability activists, disability studies academics and disabled people continue our fight against social barriers.  By acknowledging private barriers, we can start to solve them. Rosie will feel pain and need a hospital bed, and probably a big air filled mattress. Can’t these be made in King-size though? If Rosie can’t comfortably use her old divan, can’t her husband use her bed? I can’t see why not. First though we must open up a discourse about the body within disability studies. We must engage with corporeality. Because there are a hundred barriers in private spaces that need to be challenged and removed that will then enable all disabled people to think energetically about the social barriers to being and doing.

4 thoughts on “The Social Model: Sleeping on the Job?

  1. Kirsty

    The social model doesn’t ignore impairment, it simply sees it as different to disability. Mike Oliver has written about this recently in Disability Now, if not in other more academic journals. Disability and impairment can be helpfully seen as different – not all of us who experience disability, ie discrimination originating from society have impairments, even though many of us do.

    I would say that several of Rosie’s problems originate from barriers which relate to the social model; poor investment in health and social care mean that the OT does not have the time or the skills to deal with this sensitively, and of course double hospital beds exist but the last time I checked were in excess of £5K, so the lack of investment again means this facility – which I agree is essential – is not available. In the short term – wouldn’t raising the husbands bed solve this? And then sharing a large duvet? I find this works for us (I am a disabled person)

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  2. Andrea

    My understanding of the social model is that it does not ignore impairment altogether. A disability is the interactive effect of a person’s impairment and the environment–not the environment in isolation.

    I do concede that many adherents of the social model like to put a lot of emphasis on environmental barriers as the real source of disability, probably in part because that is how many people do in fact experience the concept of “disability” and also in part because people less familiar with impairments or disabilities may often tend to ignore environmental barriers altogether and blame difficulties of social inclusion only on the person’s impairment. An over-emphasis on the role of environmental barriers I think is meant in part to counter these kinds of blanket stereotypes. This is not to say that there isn’t some need to modify the social model to better accommodate the experiences of people who do experience limitations more directly linked to their impairment (perhaps particularly an issue for people experiencing extreme fatigue, pain, or both). But part of the problem may be the way the concept of the social model is often explained to others, rather than necessarily a limitation in the social model itself. I will let better experts than me point you to appropriate literature on the topic that can explain better than I what the social model is MEANT to mean.

    I am puzzled that you seem to think that the social model only applies outside the home. The home, too, is an important part of a person’s environment. The difficulty your friend is experiencing seems very much part of her environment (ie, the lack of equipment that can meet both her medical needs and also her need for closeness and intimacy with her husband), and partly a result of stigmatization. People with impariments/disabilities are often perceived as beeing without sexuality or sexual desire, or the impulse for affectation and intimacy and human closeness. It is probably in part because of this stigmatization that there aren’t more attempts to not just design and construct affordable beds that can be shared by a couple while still meeting the medical needs of one or both partners. And, moreever, attempts to make it easier to obtain these beds without paying an arm and a leg. Your friend’s story seems to be to be exactly the kind of situation the social model is meant to highlight.

    Re, raising the husband’s bed: might a set of elephant’s feet help? Try googling “elephant’s feet furniture risers” or other similar phrases to see what you can find.

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  3. Sasha Scambler

    Having read around the area it seems that limitations experienced directly from impairments, which are fundamental to the experiences of many self-identified disabled people, are largely ignored by the social model or by people who purport to be advocates of the model. Just look at the amount of time devoted to people living with chronic disabling illnesses in the average Disability Studies textbook. This work also raises interesting issues about self-stigmatisation and the barriers created by the disabled person’s own understanding of their body and its relationship with the social environment.

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  4. Crip Queen

    I will keep this simple, for Doctors in Disability Studies with little understanding of the issue.
    1. The disabling attitude of the Occupational “Therapist”, de-sexualising her client and refusing her choice in her own support plan is a valid social model reading of this case study.
    2. It is the OT that is disabling Rosie, not her body.
    3. The purchase of standard, medicalised equipment by the NHS without the input of the people who use it is a disabling barrier, which can be best understood in social model terms.
    4. The lack of provision for dignified palliative care for people with MND to stay at home as they wish is a disabling barrier which can be analysed in social model terms.
    5.The pitiful construction of these disabling barriers as being Rosie’s individual problem and not all of our problem is disabling and another social barrier to our equality.
    6. Some barriers can be overcome when we have disabled people doing paid research in disability studies, so the standards of understanding our lived experience and analysis will be higher.
    Question.Is this blog real or just a useless staged joke by some psychologist, seeking to discredit disability studies so that professionals can take back their privilege and hospitalise us all? If it is real, it is one of the most disabling things I have read in a long time.
    Suggestion. The blogger could help restore her mistake by passing on the advice from disabled people on this page to her subject of research and tackling the NHS Trust involved about its awful service.

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