It’s time I addressed an awkward issue that tends to dominate most people’s understanding of Tourettes Syndrome – bad language. By this I don’t mean the swearing or personal insults that so many people think of as the key feature of Tourettes – what I mean is the language that’s used to describe the condition itself, and disability in general.
It’s painfully obvious that language plays a massive role in shaping the way we view ourselves and the world around us. For disabled people, language gets straight to the heart of an ongoing struggle for equality. Descriptions of disability are constantly changing – sometimes reflecting more enlightened ways of thinking and sometimes, I think, highlighting a general discomfort about the whole subject.
We no longer talk about ‘the handicapped’ or ‘the wheelchair-bound.’ And most of us now know that disabled toilets are actually accessible toilets (unless they’ve been turned into a handy place to store toilet rolls and cleaning products, in which case they stop being accessible to anyone). We no longer talk about ‘the lame’ or ‘the retarded’ or ‘spastics’ in order to move away from the stigma that’s built up around such terms.
However, it still seems totally acceptable to describe people with conditions like mine as ‘sufferers.’ I’ve been thinking about this a lot lately because of the TV, radio and newspaper interviews I’ve been doing to promote my new book. At the end of each conversation I make a point of asking the journalist I’ve been speaking to, to make sure they describe me as a ‘person with Tourettes’ rather than a ‘Tourettes-sufferer.’ Even so, this term often seems to slip into the piece they’re working on.
Admittedly there are times when having Tourettes does make me suffer a great deal, but when I find myself singing a spontaneous song or verbally abusing inanimate objects because of my condition, suffering’s the last word I’d use to describe the experience.
Using a term like ‘brave’, ‘struggling’ or ‘suffering’ to describe any disability reveals a lot about the preconceptions of the writer. It’s either a lazy form of intellectual shorthand that allows them to fit their piece into the familiar mould of “poor old powerless disabled people trying their best to overcome their obvious crippling difficulties”, or it reflects their genuine fear of disability and difference.
Maybe that’s a bit harsh, but if you ask me, calling someone with Tourettes a ‘sufferer’ is just bad language.
I think there was an interview with James McConnel where he was saying he was the one who had Tourette’s, but it was his wife that suffered from it! Occasionally when I’m having a bad day I don’t mind the bad language because it lets me feel sorry for myself, but it’s quite an us-and-them way of phrasing it.
Yes, it used to be that the person with the condition suffered, usually at the hands of doctors, but things have improved now and usually a persons family is the one that does the suffering.