³ÉÈË¿ìÊÖ > Opinion > They tried to make me go to rehab, I said Yes! Yes! Yes!
Tom Shakespeare
Tom is a Research Fellow at Newcastle University. His non-fiction books include Genetics Politics: from Eugenics to Genome and The Sexual Politics of Disability.
They tried to make me go to rehab, I said Yes! Yes! Yes!
22nd September 2008
It wasn't a traumatic accident, just an unfortunate side effect, which results in some people whith achondraplasia becoming paraplegic due to constriction of the spinal cord. It's possible that I'll get feeling and function back - although it seems unlikely, given that I've got minimal movement below my thighs. So, in middle age, I face a whole new impairment scenario, forced to rethink housing, employment, lifestyle and fight to regain as much independence as possible.
Of course, I realise that this happens to thousands of people. Just as all my spinal cord injured friends have managed and come to terms, so will I. From my research and experience, I know I can achieve a happy and successful life as a wheelchair user. I'm not freaked out by disability. But I do mourn the mobility and freedom which I have now lost.
Above all, I have discovered a whole new world: rehabilitation. I'd never given it much thought before. Us academics and activists spend a lot of time debating the medical and social models, impairment versus barriers, but we tend to ignore the vital bit in between, where people work to maximise their ability and relearn their bodies. Many disabled people perhaps never have to think of rehab either. But anyone who has spinal cord injury, or stroke, head injury or a similar life changing impairment will have had to rebuild their functioning, one day at a time. Not to mention all the kids with cerebral palsy and other conditions which require regular therapy to maximise mobility, dexterity and strength.
So what have I learned so far? First off, rehabilitation isn't glamorous. It's boring, and difficult, and frustrating. Progress, I have discovered, is glacially slow. One day, I manage to sit up without assistance: result! Another day I have a flicker of power in a hamstring muscle: triumph! But most days, it doesn't feel as if I am getting anywhere at all: misery.
Second, almost without exception, all the nurses and physios and support staff have been fantastic. Some of the doctors could have done with improved communications skills, but I couldn't fault their professionalism. A visitor from the West Bank asked "why are you, a middle class academic, in a public hospital?". My friend and I explained that in the UK, the NHS is as good as it gets. I'd never spent any time in hospital before, but I am hugely impressed with everything (except the food), and deeply relieved to live in a nation which offers citizens such high standard healthcare, and all free at point of delivery.
Third, I have gained new respect for my friends who have been through rehab and regained a good quality of life, because now I realise a little of what they have endured. It's not something people tend to talk about. Perhaps it's so grim that people try to forget about it as soon as they can. I regularly ring a close mate who himself has spinal cord injury and spent nine months in hospital more than a decade ago. I am not sure he likes to be reminded of those days, but learning from his experiences is hugely helpful as I follow the same slow path to recovery.
Finally, paralysis gives you a different perspective on what matters in life. For example, and I'm not taking the piss here, I have discovered how important bladder and bowel control can be. I am not so bothered about ever walking again. I am even philosophical about sexual performance. But I am mightily frustrated with not being able to do basic toilet functions. This is a family website, so I won't go into details, merely to say that my current situation is both humiliating and painful, and I long for a day when I don't have a four hourly catheter routine. Hence, lying in bed willing myself to wee. I guess I'll get used to it, or get over it, or possibly, get through it. But right now, I dream of waking up in a puddle of my own urine. Sad, but true.
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Comments
Your comments were so true, firstly the one thing I liked more than any thing your great comments I miss my mobility and freedom, O my god how dam true was that and how is meant a lot to me personally.
I had a blader op in Jume as I got infections a lot since then it has seem to have done the job, but though has worked bowel problems still go, on the shout goes up to my wife who maybe in bathroom, come out quickly!!! Sounds funny I know but by god it is not when you suddenly with out warning need to go and have a number two at great speed because it has hit you with out a warning as the feeling it not there. Yes the thing we British never talk about is our personal hygene in the toilet field, a subject of great taboo but for those who suffer like us it is not fun what so ever and worse it if your out and there is no disabled toilet or a A/B in a disabled toilet and they smile and say I only popped in here for a few moments. Yeah right you can do my washing now then.
Well time to close hope this has not put you off your meals
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