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Home / Thoughts / Other's Thoughts / Cath's Thoughts / Would BIID By Any Other Name Smell As Sweet?

Would BIID By Any Other Name Smell As Sweet?

Written by Cath on Sunday, May 3, 2009

When I was growing up in the England of the late seventies I had some experiences which made me become sharply aware of the potency of names. First of all, I was a pupil at a rural school which was totally dominated by white, middle class children and I can remember clearly the single child of Afro-Caribbean descent who attended. She got bullied and called a ‘nigger’ and when this culminated in the word being sprayed on a classroom wall the culprits were summarily expelled, although I was never quite certain whether this was for the racism or the graffiti. The unfortunate victim left soon after and I don’t blame her.

The other experience that stuck in my mind concerned the school next door to mine - a much smaller establishment for children with special needs - specifically profound physical disabilities. We used to watch the youngsters disembarking from their taxis and minibuses in their wheelchairs or braces and in various states of dependency. Many had cerebral palsy. In those days the charitable association that supported these kids in the UK was called ‘The Spastics Society’. Hence to their crueler peers next door they were the ‘Spazzers’ and their detractors would strut around mimicking their contracted wrists and twisted limbs and making ‘dumb’ faces.

Nowadays I shudder to think of the name calling and bullying. At the time, I suspect I was just relieved that if someone else was the target then at least the usual suspects were leaving me alone. I got bullied not because of colour or disability, but because I was a socially inept swot and a bit geeky to boot.

Of course, within a few years overtly racist behaviour was outlawed and the Spastics Society changed their name to ‘Scope’. We weren’t allowed to use the word nigger any more, while spazzer and spaz were adopted to mean anyone who is a bit clumsy, and the words, thus diluted, lost some of their power, much like moron and cretin had done years before.

However, as we know, discrimination doesn’t stop because of a change in terminology. People just use the new words in a pejorative way instead. Thus in Britain we went from ‘cretin’ to mentally ‘retarded’, to educationally ’subnormal’, to ‘learning disabled’. From ‘crippled’ to ‘handicapped’ to ‘physically disabled’.

As long as people continue to belittle or dismiss any given group it doesn’t matter what you call them, they’ll still suffer for it.

But language does matter. Any name you give a thing impacts on how people perceive it, subtly and subconsciously, maybe, but as surely as eggs are eggs, as they say over here. It can define a condition or a group in a way that explains it better or it can influence its impact in a positive or negative way. That’s why marketing is such a powerful tool.

About three years ago, I went on the net to find out about my peculiar lifelong need for paralysis. I found references to Wannabees. That makes us sound as though we are seeking a new fashion accessory. It trivialises and belittles the pain that we go through and turns us into something akin to contestants on that most ephemeral of modern phenomena - one of Simon Cowell’s talent shows. ‘Roll up, roll up, get your auditions here! One lucky winner to be awarded the amputation or spinal transection of their choice!’ That didn’t begin to describe my experience and I wasn’t surprised that people who named themselves as such were vilified by the disabled community on line.

Worse was ‘apotemnophilia’. The Greek sounds impressively medical, but it has that darkly sinister ‘philia’ on the end, denoting something that surely should be illegal or is at best quite immoral. Not only that it is simply wrong in application, if the medical profession is seeking to use it for all sufferers. Many, if not most experience no sexual component to their need for disability, unless it be that the more comfortable someone is in their body the more likely they will be to enjoy a full sex life. Either way, as a name for my need for paralysis, it filled me with horror, and most likely the general public too.

Now, like Claire, I am a devotee. There. That’s a tough one for me to own. I don’t much like the word. In fact, I don’t see why we need a term for being attracted to disabled people any more than we need one for being attracted to blondes or Asians or people with brown eyes or whatever. It’s just another variation of what people find sexy. Being labeled as a dev makes me feel more freaky even than I do already, much like gay people perhaps used to feel before they united against prejudice, in the days when they were ‘queers’ or ‘puffs’. If we could do away with the label, imposed by others, we could feel more relaxed about ourselves.

Sometimes, though, labels are necessary and helpful. If as a group we are ever to get acceptance or even surgery, then we have to play the game to achieve what we need and this inevitably means a medical ‘diagnosis’. This is why I think that the term ‘Body Identity Integrity Disorder’ is ultimately helpful, albeit a mouthful. It is both concise and sufficient to define what we experience in the way that a doctor needs to understand it, and it is doctors who we desperately need to understand us, if we are ever to get our surgery. It is thus more helpful even than ‘transabled’ which is not of itself sufficiently explanatory to my mind. And when I discovered it, the name did not frighten or shame me as the others had, but at last gave me some sense of legitimacy.

I realise fully now what I only suspected in my youth: what it must have felt like to be called a nigger or a spaz. That’s why getting this right is so important if our community is not simply to be tarred with a different brush under its latest name.

Tags: Apotemnophilia, BIID, Body Integrity Identity Disorder, Devotee, Transabled, Wannabe

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