I accidentally pressed publish half way through writing this, so folks reading my feed may have read an unfinished post here earlier - sorry!
Describing myself as disabled for the first time was one of the single most liberating experiences of my life. It was the next best thing to being cured of my illness. This is difficult for lots of people to understand, including some disabled people. The thing that enabled me to acknowledge my disability was the Social Model of Disability. I'm not going to write a primer for that here (I tried before), but this months Disability Blog Carnival is about freakiness, and this post is about how raising the freak flag can enable you to feel less freaky.
There was a point where my bad legs gave me problems getting upstairs. My condition causes my legs to hurt all the time, more so when I have my weight on them and very much more so when I attempt to climb steps. I was the problem. And this was how I saw my role in all the difficulties I encountered. There were all sorts of things that were difficult to do because I hurt, because I had this problem or that problem, even because I had a problem that other people couldn't understand and were reluctant to accommodate.
Then I realised that the problem was that stairs disagreed with me. I think this is the best way of putting it. Rather like when people are told they have food intolerences - really, it makes more sense to say that food doesn't agree with them; the food makes a ruckus travelling through their bodies when the person themselves was quite happy to live and let live. I have nothing against stairs but they pop up and get in my way. I am perfectly capable of moving between levels if there is a ramp or a lift. Where I can't access areas of a building, the stairs, not my legs, are the problem.
This is not to say that all stairs are wrong or that every building that exists can or should be made fully accessible, but where there are stairs and nothing but stairs, this is a problem that must be born. I am not a problem that the building (or those who have the power to do something about it) have to work around. The stairs are a problem to me and other people. Not even people like me, but people with all kinds of physical variation.
And thus I am disabled. Obstacles exist, attitudes exist which impose unnecessary limitations on my life. Disability isn't something I have, it is something that happens to me.
So why was this realisation the next best thing to being cured?
My illness suddenly became much more personal and private. My illness had nothing to do with the obstacles and attitudes I came across. The fact that my condition is invisible, fluctuating, a little medically mysterious, none of that stuff matters in terms of my interaction with the world. The world sometimes has a problem with that stuff, but it is the world's problem, not mine.
So for example, the stairs. My illness isn't the problem with steps. If they invented a magic cure for the Dreaded Lurgy, then there would still be people with other conditions that cause pain when climbing stairs - including some of the most common effects of aging. Then there are conditions which make folk unstable and prone to toppling over when climbing stairs. Then there are legs that don't work at all, don't bend or straighten and cannot hold any weight. Then there are legs that aren't even attached any more. That's a great number of people, to say nothing of those non-disabled little people who have not yet learnt to walk and so need carrying or pushing in prams. In any busy public building which caters for a cross-section of society, steps and stairs are likely to cause an obstacle to several people every day.
In other words, whatever happens with my health, the stairs are still a problem. If I am able to build up my strength so that I can move about more comfortably, then the need for accessible buildings wouldn't go away. My personal ability to climb stairs has varied greatly over the course of my illness, but their disabling effect hasn't changed.
My identity as a disabled person is a very public thing, whereas my illness is very personal. And this gives me far greater freedom about how I deal with my illness. I have written before about the Sick Role and the obligations one feels when one identifies as an ill person. You are obliged to appear ill, to convince others that you are ill, to try to get better and to convince others that you are trying to get better. It is almost as if you end up apologising to every flight of stairs you meet, as if there is some bargain between you that you have failed to keep.
But since it is stairs and narrow doorways and loud, bright environments and most of all other people are the cause of the inconveniences I experience, I have far greater freedom in my attitude towards my illness. I am allowed to hate it or not mind it. I do not have to put on a brave face, nor do I have to see it as a tragic.
So for example, to be honest, I don't mind not being able to walk about very much. It is far bigger problem that I can't drive, which is mostly down to cognitive symptoms. If I could be rid of my cognitive symptoms, and still experience chronic pain (at this level) and mobility problems, my life would be a lot better. During periods where my pain has not been so well managed, I have longed to lose my legs rather than experience that amount of pain. These aren't socially responsible attitudes - if I wanted to be more convenient to other people, I would first want to walk normally, then to be able to work normally and so on.
Most of all, I don't have to mind the difference. Because my difference is no more extraordinary than lots of other differences, including those which have nothing to do with medical problems or physical impairments. However I feel about my illness myself, to the rest of the world this ought to be a neutral fact, like my height or the colour of my eyes. The fact it isn't is what makes me disabled.