Jennie On Disability

This is a page which I've debated creating for some time, since the disabled community is riddled with controversies and I've no desire to walk on eggshells with or without the aid of my walking stick. My disability does, however, have a significant impact on my life, and many people are deeply in ignorance of how these things can affect a person, so I think the time has come for me to discuss it in public. I am politically active on a range of disabled issues and do quite a bit of work with Inclusion Scotland, though I don't agree with them on every issue. I researched and wrote the Media and the Sexuality and Sexual Health components of their 2006 manifesto for submission to the Scottish Parliament. I am also frequently involved on government consultations on disability, with various organisations and as a private individual.

I've had some difficulties with mobility ever since I was a child, when I found walking very tiring and standing painful. At the time, I assumed this must be the same for everyone and accepted it when I was told I shouldn't make a fuss, but in due course my condition worsened and I discovered that I have mixed connective tissue disease. In between, a had a brief but satisfying career as a competitive swimmer, something which wasn't difficult for me in the same way because it didn't require weight-bearing or dealing with impact, and my swimming left me in good shape for coping with the disability which my illness gradually gave me. I now have difficulty walking very far (on a good day I can manage two miles with a few hours' break between them; on a bad day a hundred yards is a considerable strain), have next to no strength in my hands (never mind opening tins; just opening plastic packaging can be impossible, though I tend to get around this by stabbing things with a big knife), and can't carry more than about two kilos of weight for any significant distance. There are lots of day to day things which I have difficulty doing for myself, like getting in and out of the shower (baths are completely impossible), cutting my toenails and fastening some of my clothes. I also have problems which are more specifically due to my illness (rather than due to the damage it has done) - I struggle to cope with heat or bright sunlight, which make me dizzy and weak; I struggle to eat enough; and I have chronic pain. In many ways these latter problems are more troublesome because they're invisible. People frequently refuse to believe in them, preferring to assume that I'm drunk or on drugs or even that I'm trying to be cool. Most healthy, able-bodied people are astounded when they realise just how rude a lot of people are to disabled people, in this way and in others. I've had people shout at me in the street to the effect that I'm faking it because sometimes I need a wheelchair, sometimes I need a stick and sometimes I try to manage on my own. The stereotype of a disabled person is of someone who is always the same, but the reality is that most people have conditions which vary. Most wheelchair users are not completely unable to walk (yet often suffer mockery and abuse when they get up to do so) - it's just that a wheelchair can be the most practical option if one has to travel a long distance or deal with a lot of waiting around. These stereotypes encourage many disabled people to behave in the way which seems socially acceptable rather than pushing the limits of their abilities, so it's not just obnoxious, it's actually bad for people's health.

The fact that people can slip into a trap whereby they think of themselves as disabled and therefore stop trying is one of the reasons why doctors and social policy makers now discourage the use of the 'disabled' label, but this can itself be problematic. When I applied for fertility treatment, I was apalled to see 'Are you disabled?' listed next to 'Are you or have you ever been a drug addict?' and 'Have you ever been arrested?' on the form which decides who gets funding. A nurse told me firmly that I didn't have to tick the box unless I really considered myself disabled. I ticked it, and I told her that it doesn't really matter what I consider myself, I still had great difficulty accessing the ward when the lift was always broken and there were miles of corridor in the way, plus doors I could scarcely move. I really don't think it helps to pretend that one doesn't have difficulties in order to do the polirically correct thing and focus on one's abilities instead - labelling oneself 'differently abled' or somesuch nonsense, as if everybody isn't differently abled to begin with. I may be a mutant, but I have no amazing fighting powers - I can't even fly. Let's keep things in perspective here. I have a lot of advantages over the average person, and I'm not about to lose sight of that, but they didn't come about because of my disability and they don't make me any more capable of opening heavy doors. Nevertheless, it's worth noting that the human species didn't get where it is today because of its mighty thews, no matter what Robert E Howard might imply; brains count for a lot, and often there's an engineering solution to apparently insurmountable problems. I need my ingenuity to help me work around difficulties others wouldn't encounter in the first place, but it's good training for tackling other complex problems.

One of the things which disabled people still have to put up with in modern western society, and which is surprisingly common despite the fact that those who express it often think they're being daring, is the attitude that we're useless and ought to be killed off in order to relieve a drain on society. Government scapegoating compounds this, combined with lazily made news reports which show pictures of people walking with sticks when they talk about Incapacity Benefit (not that some people don't have a real need for support, but most disabled people work for a living like anyone else). Not only is this attitude economically naive and socially destructive, it really damages the confidence and self esteem of many disabled people, itself making it far harder for them to live productive lives. And it misses what I would have thought of as a rather obvious point. I don't expect people to generously tolerate my existence any more than I generously tolerate theirs. I am just as capable of destroying them if I should care to, but refrain as a consequence of my civilised values, which in turn stem largely from enlightened self interest. When people are helpful and kind, I shall do my best to return the favour, and shall spend the rest of the day feeling happy as much because of their existence as because of the assistance they gave. When people are shite... well, fortunately I never had too high an opinion of humanity to begin with, so it won't break my heart; I won't let it be my problem, but it might become theirs.

One of the reasons why some disabled activists don't like to talk about people being disabled is that they feel the disabling is something which comes from society, and I have some sympathy with this argument, though I think it's often taken too far. Not being able to get up stairs doesn't represent a significant difficulty if a ramp or lift is present, for instance. Having difficulty balancing is not a major impairment if people are careful not to knock into one another when they're out and about (a care which I once thought was common courtesy, but which now seems rare). Good manners is often enough to make life vastly easier. It's ironic that many people complain about disabled people being bitter when, ultimately, that would be unlikely to happen if many other people weren't such bastards all the time. It's one thing to put up with pain, quite another to have to deal with unnecessary pain when one falls after a bus driver lurches away from a stop yet again without first waiting for one to reach a seat. If other people had to deal with the extent of this day to day, they'd be pretty pissed off too.

In saying this, I certainly don't intend to imply that disabled people have any special insight or ability when it comes to polite behaviour. People who don't need disabled parking spaces ought to be heavily penalised for taking them, but likewise obnoxious is the behaviour of those disabled activists who hang around them yelling abuse at anyone who isn't in a wheelchair, as if every disability is visible; likewise those who kick up a fuss over access to disabled toilets - using them to shag in is out of line, but so is barring access to anyone without the right documents, especially as these can be impossible for the short-term disabled (such as people with broken ankles) to get. It can be difficult, when first learning to cope with a disability, to feel okay about asserting one's greater need in certain situations (such as letting people know when one simply can't cope with standing in a queue), but it's also important not to get so sure of one's rights that one forgets other people may have difficulties too. When I've the strength, I still hold doors for mothers with prams or for people carrying large amounts of beer. It's only polite.

Perhaps one of the greatest political difficulties with belonging to a minority group in this society is that people tend to forget that minority groups can overlap. We see this in the media, when a character who is disabled is often not required to have any (other) personality traits, the disability being seen as character enough - disabled people are not supposed to belong to alternative social groups or minority religions; they're not supposed to be queer; as a rule, they're not even expected to be sexually active. This, again, damages people's understanding of themselves as well as limiting their access to advice and support facilities. It's also patently silly. Disability, though its effects can be considerable, is just one aspect of life - people are still people.