It astonishes me how much other people act as if they're invested in me being cured of quadriplegia. They so want me to be able bodied and normal.
It's not touching. These are not Hallmark moments. They're annoying.
This is made worse by the fact that I have a 'trendy' disability, one in which cures are constantly being publicized and debated. These cure stories imply that with the right amount of grit and determination anyone can walk again and elevate the 'cured' individual to a saint-like level when actually the person lucked out and had the right variables that , with some work (probably the same work many of us who cannot walk tried to do in PT), resulted in them walking. In my disability community, there are those who live waiting for a cure. I have a problem when people do this to the detriment of living their lives fully in the meantime, not accepting life on its terms as it is in the present. I think it creates a whole lot of problems. I'm not against a cure - just think that we should all be living our lives in the meantime.
Because of the publicity this topic receives and the "feel good" stories that come from it, some people attribute cures to a miracle (so those who don't get cured don't pray hard enough or lack faith) and others attribute it to willpower (those who don't get cured don't have enough of that). These attitudes add to the difficulties for those of us who fall into this "waiting for a cure' category. Variables differ, injuries differ and the care a person receives at the time of injury can affect recovery, such as the recent case of Kevin Everett, who received an experimental treatment at the sidelines during a football injury and may walk within weeks.
I've wasted far too much time and energy on dwelling on walking being somehow necessary to a good and productive life. Which it's not. I believe that a lot of this behavior arises from the fact that folks just don't 'get' that I can have a positive life without walking. That belief does a great deal of damage and is promoted and fed by much of the media coverage about cases of cures.
I'd like to just resolve this situation here and now, although I know this won't work. If I do walk, I promise I'll blog about it. I'll send out announcements. If a miracle occurs and I'm cured, if I wake up and spring out of bed, I'll definitely write about that.
So let's all get on with our lives. Or,to put it another way, put down the ducky...
5 comments:
I echo your feelings with this. It's annoying to have people in my face always telling me about the latest story they read about someone who walked again just because I'm in a wheelchair.
I'm a PT and think that unless someone treats you they shouldn't comment on your health issues. However patients tell me they get all kinds of negative remarks aimed at them because they're in a wheelchair. It's sad that we live in such a judgmental world. You're wise to live your life fully. I'd never encourage someone to sit around, put their life on hold and wait for a cure.
Carmen
I am SO with you on this! Also, I think huge amounts of money are being wasted on immoral and ineffective xures that could be better spent on the PRESENT needs of people who are disabled NOW.
(Oh and there's good news on ny resuscitated blog.... check it out, if you'd please be so kind.
trendy, huh?
that's you ... always in style.
Delicate grin.
It's really rude when people do that. I cannot believe what people feel free to say. It's your fault; it's God's plan; try harder; new medical cure in mushroom slime, you haven't tried it?
Gah!
WCD
People feel compelled to tell you about any cure they've heard about, and while I sort of understand the impulse (a lot of times, it's from people who care about me), it's so frustrating to know that they are thinking 'if you just did X or Y' then you'd be healed. It puts you in the position of having to defend yourself against attitudes and beliefs, and it's an unnecessary burden for people with disabilities.
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