Whenever I talk or write about my disability, I face two problems. The first is that I am slightly embarrassed by it. Nobody really wants to hear anyone carping on about their horrid life. It's lead to whole genre of 'My Struggle' stories in which disabled people overcome their physical or developmental shortcomings through resourcefulness and bravery and emerge greatly admired, but not any less disabled, or any more likely to get laid anytime soon.The other problem I encounter is that my disability is just unfashionable. I have club feet (talipes is its medical name), and although it affects one in a thousand babies, it is often quite effectively treated in early childhood and many sufferers go on to have few major problems in their adult lives. However, they might continue to have minor issues and, as they get older, their feet are the first thing to give them problems.
But there's not a lot of info around about the condition. There aren't many websites around, for example. If you Google 'Club Feet' there are 33,900 entries. More fashionable disabilties have many more web-pages. For AHDH there are 5 million or more and for Asbergers there are almost 4 million. This happens, I think for three reasons. The first is that we live in a hugely child-centred world. Most parents are desperate for their children to do well, and disabilities that can impair educational achievement are top of the agenda. There's also a worthy coolness to developmental disabilities. If you look like everyone else then you can always been portrayed as some kind of edgy, misunderstood outsider. It's the disability equivalent of rock musicians claiming they were expelled from school. We love a rebel and if you fit in too much then it's just boring. Of course, the reality of mental disability is much more dreary, but it's easier to deal with than the sheer revulsion people feel towards deformity. Mind shock is much easier for most people to deal with than body shock.
A poster boy or girl is always a good idea. Parkinson's disease (18,000,000 Google entries) has Michael J Fox. Paralysis has Christopher Reeve, Autism has Nick Hornby's son (as well as loads of people from Darryll Hannah to Woody Allen who are reputed to be Autistic), deafness has Marlee Martlin, blindness has Ray Charles and Stevie Wonder (wearing cool shades), RRMS has President Bartlett. The Prez is an example of the third reason. Some diseases and disabilties are fashionable because they have been protrayed in fiction.
Googling 'Famous People With Disabilities' gets 2,350,000 entries. The first ten pages all mention the same few people as I have noted above, including many compiled lists. Google 'Famous People with Deformities' and the number goes down 254,000. The seventh entry on the list is an article about Jusepe de Ribera's 1642 painting Portrait of a Clubfooted Boy. Page two of Google's answers has entries about Gout and Richard III. For 'Famous People with Club Feet' The entry-count is 522. Entry #9 is a Daily Mirror columnist laughing at a doll of Princess Diana because it looks like she has two club feet. After that, the words are pretty randomly scattered. I tried going to page 39 and almost every entry used the words Club Feet as a casual pejorative.
As well as a poster person, it's useful to have a novel or a film about your disability. It seems that, after The Curious Incident of the Dog in the Night Time, Asperger's is understood by plenty of people and is pretty high up on the awareness agenda. Even if the protrayals are unsatisfactory, as in Rain Man (although even today some people seem to think that every Autisic person is a mathematical genius), the awareness level goes up. Talipes is, admittedly, a pretty humdrum kind of thing. Medical shows on TV tend to stick with the obscure, shocking and entertaining diseases and afflictions. For example, this weeks Greys Anatomy featured two genuine medical problems in Craniodiaphyseal Dysplasia (lionitis - or the disease the kid had in Mask) and a woman who was having spontaneous orgasms. Very entertaining and moving all round. But not real.
So, it looks like if I want to have a fashionable disability, I'll just have to write a novel and turn it into a major film. So, coming to a Borders or a multiplex near you soon: 'Saltydog - My Struggle'
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