Βι¶ΉΤΌΕΔ > Opinion > Messed up, death obsessed cripple
Liz Carr
Liz is a crip activist and actor, now trying to gain experience as a stand-up comedian. Originally from the North West, she recently moved to London, lured by the bright lights and the promise of fame and fortune. She's still waiting.
Messed up, death obsessed cripple
18th February 2010
My mum told me recently that she thinks I talk too much about death. I agree, but if I talk about it too much, I think about it even more. Since being told as a child that I 'wouldn't live to be old', I worry about it, I'm scared of it and I expect it at every turn. If I'm not talking, thinking or writing about it, I'm telling jokes about it. For me, death has become a way of life.
When I turn on the TV to distract myself from morbid thoughts, there's no escaping so called role models like Heather Mills skating around in Dancing on Ice, or the contestants on new Βι¶ΉΤΌΕΔ Three disability reality series Dancing on Wheels. Then of course there are
the current Affairs programmes, featuring an assortment of cripples arguing passionately for and against the right to die.
When I think about it, viewers might well be forgiven for believing that the only things disabled people want to do these days is dance or die. I don't want to do either. I'm strictly not into dancing and I'm definitely not encouraging death. In fact, I have the opposite problem: I'm so worried about dying that I've become a little obsessed about my health. And not in a good way.
I don't eat well, exercise or do whatever is necessary to be as healthy as I can be. No, instead I obsess that every little bodily sensation that is unfamiliar or unwanted could be the beginning of the end.
I'm not saying I'm a hypochondriac, but if I have tingles down my arm, I'm having a heart attack, a headache becomes a brain tumour and stomach pains must mean that I'm haemorridging. Years of watching Casualty, House and ER have made me into an enthusiastic, amateur doctor.
the current Affairs programmes, featuring an assortment of cripples arguing passionately for and against the right to die.
When I think about it, viewers might well be forgiven for believing that the only things disabled people want to do these days is dance or die. I don't want to do either. I'm strictly not into dancing and I'm definitely not encouraging death. In fact, I have the opposite problem: I'm so worried about dying that I've become a little obsessed about my health. And not in a good way.
I don't eat well, exercise or do whatever is necessary to be as healthy as I can be. No, instead I obsess that every little bodily sensation that is unfamiliar or unwanted could be the beginning of the end.
I'm not saying I'm a hypochondriac, but if I have tingles down my arm, I'm having a heart attack, a headache becomes a brain tumour and stomach pains must mean that I'm haemorridging. Years of watching Casualty, House and ER have made me into an enthusiastic, amateur doctor.
The internet has also helpfully contributed towards my informal medical education. All I have to do is log onto my favourite search engine, type in my symptoms and .0024 seconds later, I can have over 47,000,000 possible diagnoses and a whole new medical condition to worry about.
I can't be the only Google doctor out there? Surely most of us with access to the internet will be guilty of wanting an instantly gratifying dot com diagnosis at sometime or another? It's so easy to be informed about our health... and to jump to conclusions about it. When Dr Liz is let loose on her keyboard, the prognosis is usually terminal.
It was a relief to learn that I'm certainly not the only death obsessed crip. A disabled friend of mine recently told me that he is so scared the gimpy grim reaper will come to claim him during the night that he sleeps with the light and the radio on. This same friend is now 48 years old and the last remaining 'biffy'(*) from his class at special school.
Another friend who went to a segregated boarding school told me that when a pupil died, no one would ever talk about it. Instead they'd disappear into the night without even a mention the next day in Assembly.
What happens to some of us as disabled kids must surely come back to haunt us when we're older. At the age of 16, I was given a birthday card with the phrase, "it's not the years in your life but the life in your years". A lovely sentiment but a reminder of the fragility of mortality is not what you need to hear on the day you turn sweet sixteen. All I wanted was my ears pierced.
Once I became involved in the world of disability, however, I learnt the truth of that Hallmark philosophy all too well. I used to take part in protests for disability rights and, at every major demo, there would be a new t-shirt that we'd wear like a uniform. Printed on the sleeve would be a list of all the activists who had died since the previous event. We regularly lost so many friends and colleagues that some years the t-shirts had to be long sleeved.
I have no doubt that all these experiences and lessons have made me the messed up, death obsessed, health anxious cripple that I am. They've informed my neuroses, my humour and my cynicism. But, contrary to popular belief, I, as a disabled person, have had enough death to last me a lifetime. That's why, the next time I turn on my TV to hear people
debating a disabled person's right to die, I'll be one of the ones voting for the right to stick around.
(*) Biffy: (n.) (sl.) What Liz calls someone with Spina Bifida - Ed.
What happens to some of us as disabled kids must surely come back to haunt us when we're older. At the age of 16, I was given a birthday card with the phrase, "it's not the years in your life but the life in your years". A lovely sentiment but a reminder of the fragility of mortality is not what you need to hear on the day you turn sweet sixteen. All I wanted was my ears pierced.
Once I became involved in the world of disability, however, I learnt the truth of that Hallmark philosophy all too well. I used to take part in protests for disability rights and, at every major demo, there would be a new t-shirt that we'd wear like a uniform. Printed on the sleeve would be a list of all the activists who had died since the previous event. We regularly lost so many friends and colleagues that some years the t-shirts had to be long sleeved.
I have no doubt that all these experiences and lessons have made me the messed up, death obsessed, health anxious cripple that I am. They've informed my neuroses, my humour and my cynicism. But, contrary to popular belief, I, as a disabled person, have had enough death to last me a lifetime. That's why, the next time I turn on my TV to hear people
debating a disabled person's right to die, I'll be one of the ones voting for the right to stick around.
(*) Biffy: (n.) (sl.) What Liz calls someone with Spina Bifida - Ed.
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Comments
I don't really like talking about death Liz , especially when a member of my own family has died. I suppose it must an issue though what with all the stuff at the moment going around in the news and through personal emails about assisted dying , and Liz is involved with me on the email list for that.
Good issue though but I am sure not many disabled people will talk about it.
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I can definitely identify with some of this - the experience of your friends dying around you when you're still young does have an effect on your life. You can be in such a rush to "make something of your life", convinced you're living on borrowed time that you forget to enjoy life. But it does inform my humour, in a bizarre way.
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I do often wonder what AB people think our lives consist of. I use the term AB loosely, but I've lost count of the people who enter my life rather euphorically telling me they've seen Rainman and see that as some sort of credential! That's only followed a close second by the "can you do any tricks, the counting one?" (always said very hopefully in case I may turn out to be more useful than I appear to be at first glance!)
I definitely don't dance either, not through any lack of trying on the part of my mom though I must admit. Luckily I was despatched from ballet lessons after one week for confusing the other students. Similarly, I was expelled from a disabled children's community group for tangling up all the wool during knitting lessons (??knitting lessons?? I ask you!)
But the media obsession with euthanasia must hit hard and hit home for those people who live with it daily as you do. I have quite strong opinions on it but I guess those opinions are based more on my own beliefs than on any real experience of living with such a condition.
This article, along with many of the things posted by the Ouch users on the Forum, has made me re-assess a lot of my own beliefs. I'm often quite shocked at how my 'beliefs' turn out to be based on some kind of assumption that I've made based on very little evidence.
If I were not disabled, I would feel compelled to end this comment by mentioning how brave you are. But as I am disabled, I'll just say, you go girl. :-)
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I feel that thinking about death and my own mortality is an important thing. Not because I have any morbid interest in death or the dying but because I have learned from very early on that we have to go some day. Any day really... Although my impairments and medical condition might appear as unbearable to live with to an outsider, I still want to live. Admittedly, there werre times when I felt so bad that I wanted to die, ithese were moments when I felt misunderstood or isolated.
That is why I am very concerned with the pro-death trends that are increasing across Europe and the world. I fear that making euthanasia more accessible risks devaluing our value as disabled people and pressure more disabled people to choose death over life. If you had asked me about 4 years ago, when I was really depressed and despondent, whether I wanted to die... I'm not sure what my choice woud have been.
And if there was that choice. Well, possibly I wouldn't be writing this comment...
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I really appreciated this because I have a similar problem. Due to my medical issues and the early death of my father, I've always been convinced I won't make old bones. The latest thing to trigger this obsession is that I've developed an allergy, apparently to a preservative in red wine. It's not uncommon, but the attacks' severity has increased, so I'm off red wine for all time, or at least until I conquer the long waiting list to see an immunologist.
Unfortunately, I too graduated from Google Medical School. So I've found out that this preservative is also in a type of IV medical supply that I may need in the future to survive, if my condition worsens badly enough - which, of course, I'm sure it will. There aren't enough swearwords in the dictionary some days, are there?
Of course, there are all kinds of variables involved - I may not get worse; the preservative may not be in that stuff in dangerous quantities; it may be a different type of preservative from the same group; the stuff I need may be capable of being preserved in some different way if necessary, or made bespoke in the hospital lab... etc. etc. etc. But it's the uncertainty I can't stand. And like you, I'm all for staying alive. I want to be that spry 95-year-old crip in the nursing home who everyone looks at and goes, 'How on earth is she still here? And why is she hitting me with her walking stick?'
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