More on the Social Model

There have been several comments on my posts so far and I want to use two of them as the basis of this post. The first suggests that my previous post needs clarification and the second gives a wonderful name for the model I hope we can develop together.

Clarification of the Social Model of Disability

Anne Marie Cunningham said...

I can see this is going to be an interesting discussion! So would a social model of medicine say that we shouldn't bother to try and treat disease? Instead we should accommodate people who have illness and make their lives as comfortable as possible.

Under some circumstances yes! Let me use mother-in-law's death as an example. She was diagnosed with kidney cancer and had the affected kidney removed. Her quality of life improved for a while but soon she became ill again. The cancer had spread to her other kidney and secondaries had appeared. She was 77 and had been widowed for seven years. She herself took the decision that she had had a good life and could face her end. Being a Christian probably helped. She refused the treatment offered (more surgery and chemo) but accepted palliative care and died soon after. Three of her four children were with her when she died.

I can imagine that in another context her decision would have been resisted by the professionals and/or family.

I guess I get a little confused about the social model of disability. If I had broke my wrist 100 years ago I wouldn't have had the surgery that helped minimise deformity as it healed and so is encouraging a return to normal function. If I had been left with impaired function in my wrist then I would have a disability and could have been handicapped by this. Yes, efforts could be made to reduce this by adapting my car or getting me software so that I could voice dictate rather than type. I might have moved in to an area of medicine that didn't involve physical contact with patient.

All of that would have reduced the impact of my disability on my life. But the medical model has meant that I haven't had to endure that.

You seem to be confusing the Medical (or Traditional) Model of Disability with medicine in general. I have edited my previous post to make it clearer when I am talking about the former, and when the latter.

To me it seems obvious that the two models are not opposed to each other but can live easily together. Medically we do what is sensible and what the patient agrees to, whilst still helping them to live socially as best they can with whatever impairment or disability is retained.

The Social Model of Disability doesn't say medical interventions are necessarily bad. Disabled children should receive the same childhood vaccinations as any other child, for example. What it discourages is medical interventions aimed at "fixing" the impairment. Many deaf people could have some hearing restored by cochlear implants but will resist the idea. They have a perfectly good form of communication in American or British Sign Language, they have no need to hear. It's your problem that you can't understand them, so get an interpretor. This is a hardline interpretation but it exists.

However, the model does support the idea of working with health and other professionals to remove the barriers. Bobath Therapy is a good example. This uses speach, physio- and occupational therapists to help children with Cerebral Palsy and their parents overcome some of the effects of their impairments. Bobath Children's Therapy Centre Wales illustrates this with a number of fictionalised stories—I find Bethan's Story particularly affecting.

A proposed name for the model

In a comment to my previous post healthskills said…

I'm both a health provider AND a patient (tell me which health provider isn't going to, at some point, become a patient?!!).

I totally endorse 'health literacy' or becoming informed and in charge of their own health management.

I'd prefer to call it 'social model of health management' rather than medicine - because medicine continues to focus on deficits, impairments and biology without considering the psychological and social, and without considering the strengths, resilience and assets we all come to health care settings with.

For me, that says it all. We have a name for the model—Social Model of Health Management. It also suggests a Twitter tag—#smhm.

The Analogy with the Social Model of Disability

Ok, I've stated my premise, now I need to go about developing the argument!

First of all let me direct you to the post that started me thinking about all of this earnest: Why I think I am a patient and not a consumer. Even more important than the post are the comments it has generated. In fact, I would like to invite Anne Marie and everybody who has commented on the post to become co-authors of this blog! In time I will try to synthesise the comments into the model.

My Bona Fides

I gained a Biochemistry degree in 1969 from Sussex University. Later that year I wrote my first computer program and three years later I become a programmer with ICL, developing the VME operating system. After 13 years at that I joined a UK bank and eventually became an Information Architect. I beleive that the biochemistry background and a continuing interest in the biological sciences and the analysis skills required to be an Information Architect give me the skills to look back over my own experience as a cancer patient and to create a general model from that and my analysis of other people's stories.

I have also had first hand teaching about the Social Model of Disability by Alison John. Ally is a remarkable woman who lives with Cerebral Palsy and runs her own training and consultancy business, Alison John and Associates. Alison was one of the disabled^[1} young people who contributed to the development of the Social Model during the UN's International Year of the Disabled in 1981. I've worked with her as her Personal Assistant several times and she made sure I understand, and can apply, the Social Model.

It's going to be difficult to be entirely objective about this but so long as I am aware of the danger I should be able to address it.

Despite the emphasis on "me" and "I" in the foregoing this is meant to be a collaborative process, which is why I have started this blog. Please comment on the entries. I am also open to requests to become co-authors of the blog and hence the model. Either leave a comment on the blog making the request and include URL's of your blog or whatever so I can get an idea of what your contribution might be. Somebody who disagrees might be useful.

As an aside, I would be interested in using Google Wave for this process. I have requested an invitation but it will probable be a long time coming.

The Analogy

The Social Model of Disability was developed an antidote to the Medical Model of Disability. In order to spare the feelings of medical professionals the emerging preferred term for the Medical Model of Disability is the Traditional Model of Disability^[2}

In essence the Traditional Model of Disability said "You are disabled because there is a problem with you. We need to fix the problem to fix you". In other words, attempts were made to alter the disabled person in order to make them fit better into society. However the Social Model of Disability says: "You have an impairment. Because of the way society is organised it has erected various barriers that prevent you reaching your full potential. Let's try to fix society." This has given rise to legislation to try to reduce those barriers. An obvious example being the provision of ramps or lifts to enable access to buildings for people who can't manage steps for whatever reason.

In my view the Traditional Model of Disability is only a subset of the still prevailing and traditional view of Medicine in general. This model is authoritarian, cabalistic (has information only made available to insiders), hierarchic, paternalistic and even abusive^[3].

This model is currently being challenged and the proponents of change wish for an open, equal and informed relationship between the person who is managing their own health and the health professionals who are enabling them to adress any issues that arise.

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[1}For American Readers: Where I use the word disabled of any word derived from it, you should substitute handicapped but be aware that in the UK the H-word is regarded by disabled people in the same way as the N-word by black people.

[2] Personal communication from Lynne, Disability Equality Trainer, 2009-10-28.

[3] Consider the use of the "chemical cosh" to restrain difficult people or even the routine dispensing of strong sleeping pills to patients to ensure that the night staff have an easy time of it.

What is this blog about and for?

For the last three years I have kept a Livejournal blog describing my experience as I was diagnosed and treated for prostate cancer. I am no-longer receiving any treatment for the condition and so I regard myself as cured and call myself a cancer survivor.

I created that blog because I wanted to record and communicate my experience as a way of demystifying the process and helping people understand that cancer is only another treatable disease. The outcome is often (but not always) that the person is able to live a normal life or, at least, live a life in which the effects can be managed. Even where the condition is the direct cause of the death of the person it is still important to take the positives from the situation and make the information available to other people in the same situation.

I have discovered that there is a very vigorous debate going on the internet about the relationships that people have with the medical profession. It covers such things as: "What do we call such people?"; "who owns the information?"; "Whose life is it anyway?". It goes by various names: "Health Advocacy", "Participatory Medicine" and lots of others.

It seems to me that there is a paradigm shift going on. People have access to information that was previously only available to health professionals, their own information is held within the health system but it could now be owned by the person not the system. These are technological drivers. In the United States there is a huge debate on how to make health provision fair and efficacious. This is a major social change. The other driver (both technological and social) is the explosion in social media which is enabling this debate to occur between people across the world.

I am British citizen who is more than happy with the National Health Service and would never consider buying health insurance.

The thesis I want to explore in this blog is that there is a paradigm shift happening and it is akin to the ways in some societies (notably Europe and the US but by no means exclusively) have changed the way they regard and treat disabled people over the last 20 years or so. The major change has been the development of the "Social Model" of disability. I believe that we are developing a "Social model" of medicine.

I attended a "Disability Equality" training course last week and one of the participants complained that disabled people had created a new establishment when he asked who the "we" were that our trainer (who is visually impaired) kept referring to. She replied: "empowered disabled people". To my mind that is what is happening in medicine—people previously referred to as "patients" are becoming empowered and developing a new vocabulary as a result.

In coming posts I will develop this theme and look at some of the terms that are being bandied about.