Tuesday, 30 July 2013

Distinctly Divisive

Now an article about the cuts by a respected disability academic would normally be a good thing, but in 'Distinctly Disabled' Mike Oliver delivers a message insidiously divisive enough to have been written by Esther McVey's Special Adviser (and I say that having spent a good few hours challenging similarly divisive messages coming out of McVey's 'Disability Confident' fiasco just a few days ago). There's really no way to get into this without getting into disability theory, so apologies in advance.

I'd advise reading the article to understand the full scope of Oliver's article, but it can be roughly summarized with two quotes:

"the link between illness and disability should be severed for the purpose of planning and delivering services"


"while non-disabled people who are ill get better, for disabled people, while we may recover from our illness, we will never recover from our disabilities"

And a conclusion:

"In these hazardous times, we need to be very careful not just with what we think or do but equally importantly, what we say about ourselves."

In essence, Oliver wants us to reject the idea of 'sickness and disability' and concentrate on disability alone, it is just a pity that that isn't a distinction the reality of disability and impairment recognises.

Ultimately this comes down to interpretations of the Social Model of Disability, which rejects the Medical Model concept of our being broken by our disabilities and needing to be fixed by godlike doctors descending from the Ivory Tower of medical science and instead holds that Disability is the discrimination we experience because of the refusal of society to put in place adaptions to our impairments. It's important to understand that this doesn't just mean things like making sure buildings are wheelchair accessible, but also challenging and changing the perniciously damaging attitudes towards disability that allow people to say things like 'I'd rather be dead than in a wheelchair,' and not realise for an instant that they've said anything wrong.

We debated these points long and hard on the old BBC Ouch bulletin board, because many disabled people, often with relatively straightforward mobility impairments, get hung up on the ramps thing and think that's all the Social Model relates to. But by chance Ouch was a hotbed of Bendies (people with EDS and HMS) and Spoonies (people with ME, CFS, CRPS, Crohns, Lupus and so on), people whose impairments are inherently messier, without such simplistic dividing lines between sickness and impairment.

Taking myself as an example, my Hypermobility Syndrome (a genetic syndrome affecting connective tissue) results in a clear mobility impairment, I walk with crutches, but inherently fuzzier is the Chronic Pain Syndrome that comes as part and parcel of HMS. My reaction to pain is abnormal at the neurological level, neuroplastic remodelling makes pain a norm rather than a response to painful stimuli. My doctors have long since given up on any hope of curing me, my Consultant deals in 'pain management', not 'pain curing', I am, to quote a term that seems to horrify Oliver, openly considered incurable. Yet I also have an ongoing need to see doctors about these more sickness-like aspects of my disability. Unlike, say, the common conception of a wheelchair user, my impairment is inherently variable, I don't know how much pain I'm going to wake up in, I may struggle to walk 10m, or stand at all, or I may walk almost normally, and these things may change from one step to the next, or in flare-ups that spread over months. When I have a major flare-up, I may need to negotiate new painkiller dosages, or even new drugs, with my GPs, just to keep the disability I face from my impairment at a controllable level. In other words my impairment keeps me in contact with the medical profession in a way that most people would normally classify as corresponding to their idea of 'sickness'.

This concept of negative effects emerging directly from an impairment seems to be one many Social Model supporters have a problem with. They're all on board with the idea that society needs to remove obstacles to our use of the built environment, that failing to do this is a form of discrimination we classify as 'disability'. If they aren't already there then they can usually be brought around to the idea that really implementing the Social Model means changing the way society thinks about impairment, because that's a form of 'disability' too, but the idea that 'disability' might result directly from an impairment is a step too far for many, who see that as an attack on the distinction the Social Model draws between the two. Yet if I'm due to meet someone, and can't get there not because the meeting is inaccessible, but because I'm in too much pain to get out of the house, or even out of bed, then doesn't the Social Model demand that they not think any the less of me for that? If I'm like a bear with a sore head because of the amount of pain I'm in, then shouldn't they recognise that my impairment results in consequences for me that they should adapt to? This is a step which many Social Model advocates seem to have difficulty with, but if the Social Model doesn't recognise all the consequences of my impairment, then either there is something wrong with the Social Model, or with how completely they have understood it.

Oliver wants to separate 'sickness' from 'disability', but for many disabled people our impairments make such a divide meaningless. IDS and McVey don't care about it, they want ALL disability to be seen as curable; the thugs who harass me in the street don't care about it, they simply see that I am different, and the hate-sellers of the Mail and the Express have told them it is proper to hate me for that. Oliver can argue for his distinction, but it won't change the reality, all it will do is create an internal schism within the disability movement, between those of us who want to protect everyone, no matter whether they are 'disabled', 'sick', or both, and those who want an exclusivist definition of disability that has no truck with any of those messy sick people. IDS, McVey and their SpAds must have loved Oliver's article, because a leading light of the disability movement is advocating throwing a huge number of disabled people to the DWP wolves in order to lighten the sleigh and let those with more classical disabilities survive the purge.

I should point out I don't reject all of Oliver's argument, there is a valid distinction to be made between aspects of impairment that require medical intervention and aspects of impairment that don't, but if I'm facing a Work Capability Test, a PIP assessment or whatever punishment IDS dreams up next, then I need it to address all aspects of my impairment, not just the ones that Mike Oliver thinks make our political position more defensible. In fact it was precisely my former employer's response to the pain aspects of my impairment rather than the mobility aspects that mean I no longer have a career and am at the mercy of things like the WCA, and that led me to take out an Employment Tribunal case for 'disability discrimination'. Been there, done that, needed sickness to be covered.

Ultimately Oliver seems to have committed the most fundamental failure for an academic and failed to define his terms. He talks about 'sickness' and 'disability' and fails to delineate precisely what divides them, and if he had done that, then he would have realised that for many disabled people, Spoonies and Bendies prominent among them, his distinction doesn't reflect the reality of our impairments.