One of the themes that my reading keeps throwing up is questions about whether or not chronic pain and chronic illness counts as an impairment and/or disability. There seems to be quite a bit on either side – and the in/validity of pain seems to be a point.
I’m coming to this with some rather obvious biases. I have fibromyalgia – for a medically-flavoured summary, the wikipedia page is pretty comprehensive; I wrote on my personal, sweary, blog about what fibro does to me a while ago – and the major symptoms are pain and fatigue. It’s super-fun. For me, the fatigue affects my mobility – when I’m tired, I get slow, and my balance starts to go a little. Because of the balance, I use a walking stick that folds up when I don’t need it. When I don’t need the stick, I pass as non-disabled; using the stick marks me as ‘disabled’ to many. I’m not going to go into the practical issues of passing as disabled or non-disabled at the moment, although the implications are pretty important. I’m mostly explaining my biases because they do affect how I approach different understandings of what it means to be disabled.
As I said in an earlier post, Susan Wendell’s Unhealthy Disabled: Treating Chronic Illness as Disability (article link) was one of the first pieces of academic writing I read on the subject of disability (outside of a couple of asides in other texts). I was frankly relieved to find writing that reflected my personal experience of chronic illness as impairment – and that supported my view that it was a disability. I’ve read a bit more since then.
More recently, I picked up Deborah Marks’ Disability: Controversial debates and psychosocial perspectives (1999, Routledge). It made for an interesting read, especially as it came from a different starting point from other texts on disability; her points about prosthetics and aids being a part of the body were especially interesting. However, Marks contested that chronic pain is not as bad as acute pain – or as serious; her writing seemed to dismiss chronic fatigue as ‘nothing too serious’ (obviously, I’m paraphrasing here). I tend to find, when I read something that I disagree with so hugely as I do with this particular part of Marks’ writing, I struggle to read the rest on its merits – my disagreement colours the rest of my understandings.
For me, pain is not something that can be judged as “worse” or “less relevant than” other pain, unless we are talking about an individual’s experience of pain. Breaking my arm hurt worse than a headache (to take an entirely facetious example); this is not to say that breaking my arm hurt less than you breaking your arm, or that my headache hurt worse than your headache – while we can make generalised assumptions about things that hurt more (breaking an arm versus stubbing a toe), we cannot quantify individual’s pain against another, because we judge “how much” something hurts by what we have experienced previously. Medically speaking, chronic pain is not the same thing as acute pain – and experientially speaking, they are not the same thing. To say that one is worse than the other, however, is dismissing the experience of chronic pain sufferers – and to do the same as many others, tell them “it’s all in your head”.
John Swaine and Sally French’s Towards an Affirmation Model of Disability (2000, Disability & Society 15.4, pp.569-82; article link) proposes a model of disability that includes the positive aspects of being disabled – a non-tragic view that celebrates disability, developing from a Disability Arts approach. It’s critique of the Social and Medical Models is valid; neither do include positive experiences, or have much space for acknowledging the fulfilling lives disabled people lead. But it stated that chronic illness and pain “are neither impairments nor restricted to the experiences of disabled people” (pp. 571-2). Yes, illness and pain are experienced by non-disabled people, and by disabled people too, and not all chronically ill people consider themselves disabled either. But chronic illness can be hugely impairing – and it can have the same impact; spinal injury and CFS can both result in the impaired person having to use a wheelchair to be mobile. At this point, some of the disablement they experience is the same – it doesn’t matterwhy you use a wheelchair, if the ramp on the bus is broken, you can’t get on the bus in your wheelchair.
If disability is largely based on experience – whether positive or negative, and whether you’re using the social or affirmative model – then we cannot say “your experience was not disabling, because I don’t think your impairment is valid”. In many ways, it’s the how of disablement that is more important than the why of someone being in the position to be disabled; we cannot change the root of impairment – even if we can medicate and counsel and provide aids and prosthetics and physical therapy to alter and improve the functioning of the body, the impairment cannot be changed completely. Someone with bipolar may be able to take medication that enables them to be “normal”, and they can pass as mentally healthy – but societal attitudes to mental health can still disable them. I can use a walking stick, but if I’m too exhausted to take the stairs, the lack of a lift still disables me. A child with learning difficulties can go to school, but will be disabled by not having suitably trained teachers or accessible learning material or by the attitudes of their peers. Saying that an impairment is not an impairment because non-disabled people can experience it – well, I can experience being in a wheelchair if I break the right bones. That doesn’t make others impairments and their disabling experiences less valid; silencing some people’s experiences doesn’t make yours the only experiences there are.
All of this is thinking – and my experiences – have affected how my research will happen. I’m interested in the experiences of people who identify as disabled – because I don’t think there’s a simple way of saying “you’re disabled enough, but you’re not”. If you say you’re disabled, I’m going to accept that, because your experiences are not mine. I know that chronic illness and pain can affect mobility and range of movement – so, for the purposes of my research, if you identify as disabled, and have limited mobility and/or range of movement, then your experiences are relevant (provided, of course, you meet the other criteria – of being a sexually active adult who identifies as queer/lesbian/gay/bi).