11/12/2012 18:48 GMT | Updated 10/02/2013 05:12 GMT

'I Need to Be Paralysed, It's an Intense Longing'

"I need to be paralysed. It's an intense longing. I don't know that I have words to describe it today." This is Sean O'Conner, lifelong sufferer of Body Integrity Identity Disorder (BIID, also referred to as Amputee Identity Disorder). Until very recently I had never heard of BIID, nor had I come across the related hypernym 'transabled'. Sean defines BIID as being...

"... hard to define in just a few words... but in a nutshell, someone who is transabled 'wants' to be disabled. But it is not so much a 'want' as much as a 'need'. Our 'desire' is more a reflection of the fact that our self-image is that of a paraplegic (or amputee, or blind, or any number of other disabilities) than that of an able bodied man or woman."

The medical definition of BIID is a psychological disorder wherein sufferers feel they would be happier living as an amputee. It is typically accompanied by the desire to amputate one or more healthy limbs to achieve that end and can be associated with apotemnophilia, sexual arousal based on the image of one's self as an amputee. I wondered if Sean had any thoughts on what may have caused his, or others' BIID:

"When I was a kid, on long drives, I'd be sitting in the back seat of the car, looking at the scenery and imagining that my legs were paralysed. At the time, I didn't understand 'paralysis'. I thought it meant that the legs couldn't move, that they were stuck in one position, like wooden sticks coming out of one's body. And so I sat in the car, making my legs rigid (though bent at the knee), for hours on end."

"My earliest memory directly related to BIID goes back to when I was about three or four. It is a vivid memory, and when I asked my parents if I had imagined it or not, my parents say that they don't recall exactly, but what I describe fits with what happened at that time in our lives. We were moving house, in the process of packing. A friend of the family picked up a curtain rod, one of those 'L' shaped ones, and placed it along his leg, next to his ankle, and told me that's how you would do a splint for a sprain/broken ankle. Not much of a memory, really. But vivid as if it was yesterday."

I wondered if Sean thought the makeshift splint could have acted as a trigger or a catalyst, whether his BIID was inevitable or born out of circumstance? "I don't know. The thing is, we don't have enough evidence to know. I suspect that the closest answer is that it is a neuropsychological condition. Frankly, I don't care much anymore what caused it. I just want to have access to the only thing currently known to resolve it: surgery."

Sean bought some leg braces in his early 20s and admits there was initially a sexual aspect, "I was a typical teenage boy, full of hormones, and my original interest in braces was a confused one where sexual interest played a big part. The sexual aspect of the interest quickly morphed when I started wearing the braces. I suddenly felt comfortable, safe, supported; it wasn't about sex anymore. I'll readily admit that part of the attraction to braces is still somewhat sexual, but that's not actually directly related to BIID, it has more to do with bondage."

It seems clear to me that BIID is not sexual. Of course, there are some purely fetishised attractions to the notion of disability, it would be naive to suggest otherwise, a minority of BIID sufferers claim there are clear links between sexuality and BIID. But for sexualisation of BIID and BIID itself to be considered one and the same, seems to me to be wrong; a sexual fetish can't possibly be treated with the same amount of respect, understanding and compassion as a neurological disease, which is what BIID sufferers so badly need.

During our brief interview I was struck by the sadness - which admittedly didn't reveal itself often with Sean - and particularly the frustration of his situation. I asked if he could talk to his relatives, parents or friends about his illness " depends on the situation. Reactions vary from incredulity to outright rejection, or refusal to listen. It gets easier [to tell people about BIID]. The more self-assured you are of yourself, the easier it is. But there's always fear of rejection which makes it difficult."

Thanks to his website, Sean has managed to gather a small community of BIID as well as different transabled sufferers to share and discuss their stories. Some of the experiences shared by Sean's visitors make for emotional reading. Clare, who seemed to write frequently on the website up until 2009, described how it felt to get her first wheelchair. She writes how, on the morning of its arrival, she was filled with "a strange mixture of excitement and trepidation." She takes it to her office and after unpacking and assembling it, she IMs Sean:

Claire: ok

Claire: are you ready?

Sean: question is, are YOU?

Claire: I don't know

After many doubts and fears over her own self-diagnosis of BIID, and the significance of the situation, she eventually (with the help and encouragement of Sean) sat down for the first time in her wheelchair:

"And the universe shifted... It was off by a few degrees and it made a slight shift and suddenly it was right. I was filled with this unbelievable joy. A feeling of completeness, of rightness, of relief. I felt, rather than heard, a door slamming behind me, the lock turning, no going back now. I could barely keep up the conversation with Sean, my wits were addled, I had nothing coherent to say, but he understood. I couldn't stop smiling. In fact I had a huge, idiot grin on my face."

This was a life changing moment for Clare and no doubt there are countless other individuals who have gone through similar experiences, yet are forced to hide them through shame, fear, guilt or confusion. This may have been a moment of elation, but after talking to Sean, reading his website and trying as best as I could to immerse myself in the community, I fear these happier moments are few and far between.

I asked Sean if BIID ever became too much for him, if he ever felt overwhelmed? "Yes. I often wish I were dead. I don't enjoy being transabled. I don't enjoy the pain it has caused, and is likely to cause, to my family and loved ones who know about how I feel. To quote a transexual acquaintance of mine, 'transition is very hard'. Living as a paraplegic is hard. I'd venture to say that it's actually harder to NOT be a para and live as one than it would be to actually be a paraplegic, because not only do you have all the logistics and difficulties of living from a wheelchair, but you also have all the problems of leading a double life and having no real logistical support for your wheeling. I could go on and on with why life as a transabled individual is hard, but I think there's no need, and I don't want to appear like I'm having a pity-party, which I'm not."

Sean is most certainly not having a pity-party. Time and again I was amazed at the acceptance of his disorder and his unwavering stoicism. He has a problem, he deals with it the best he can, and he gets on with his life. Despite everything, Sean pushes on and is a willing support for other sufferers of the disease; I know if I had BIID, I would be grateful for having Sean around. As with everything out of the ordinary, the rubber-necking comes first, the empathy severely delayed.

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