On the recommendation of a friend, I recently joined an on-line support group for people with my condition. I used to belong to these things but haven’t for a while and was rather shocked when nearly the first message I read began “Hello fellow sufferers,”. I had forgotten about being a sufferer. Over the last year I have finally embraced the idea of being disabled and thus not having to suffer any more. I am no longer housebound because I have an electric wheelchair. My unemployment is no longer demoralising or embarrassing because I’m writing my book. Whilst others on the support group talk about treatments potentially giving them their lives back, I already have a life. The whole shebang would be a damn site easier if I was able bodied and healthy, if I had energy and money to spare, but it’s all right like this; life is good.
People say your health is the most important thing, but is it, really? I mean, it is precious; I greatly value the parts of me that work and I wouldn’t risk damaging myself further with excess or drugs, even the cannabis which about two thirds of my unwell friends reckon to be the dog’s dumplings for pain relief. And if you had to be entirely self-sufficient, bad health would mean that you didn’t survive. But we’re social animals; we support one another through a variety of crises and bad health or disability shouldn’t be a default obstacle to survival, prosperity and the ability to contribute to the lives of others. If we had to be entirely self-sufficient, procreation would be impossible.
Unfortunately, in our present society, we are expected to be largely self-sufficient and each individual is valued in financial terms, so that disabled people who can’t work, or disabled people whom it would be very costly to employ are without value and nobody wants to support us. Even people close to me have commented “Some of us have to work” as if unemployment, relative poverty and the constant scrutiny of fraud-obsessed agencies is a privilege. They imagine that we live an easy life on £74 a week, less than the legal minimum for a sixteen hour a week part time job. The vast majority of those incapacitated for work are over 50, so this usually comes after years of hard work and paying taxes.
To add insult to injury the government and media rhetoric implies that some of us have chosen this path. We get letters stating “Some disabled people actually want to work” as if some of us do and some of us are quite happy to stay home and catch every episode of Countdown. The rules surrounding incapacity are currently inflexible; you must either work and earn enough to eat off your own back or else do nothing. Most of us cannot work and earn enough to eat off our own frail backs, so we must do nothing. The newspapers describe malingerers and the “work shy” even though the BMA insist that the system would be difficult to defraud.
Then there’s the fact that many people have disabilities which should not actually prevent them from working, but employers are not prepared to take them on. The idea that a disabled person is a social and financial burden sustains even when that person is a PhD.
Folks’ attitudes continue to disable people far more profoundly that any medical problem. I guess that includes the attitudes of those with disabilities and health problems as well as society at large.
Sorry, I did have a deeply profound and meaningful point to make but I’m not really with it today. ;-)