Often when we think about paralysis we equate it to not being able to move your legs or arms without thinking about what that means.
Today's blog is something very simple, but hopefully it will lead the non-paralyzed to understand what it means to not be able to move legs or legs and arms.
I'm at home alone today as my wife and kids went swimming with some friends. I was listening to the radio when a tornado warning came through. Now, I'm not afraid of the tornado, having lived through the Great Woodstock Tornado of '79, but I have a very simple concern, and maybe after you read this, you can also think of all the things that I can't do.
The wash.
Yes. That's what I'm worried about.
I can see my neighbours taking in the wash hanging on their balconies so I start to wonder whether my wife had done laundry this morning and had it hanging on the third floor? I've tried calling but I can't get a hold of her.
I guess when my underwear falls on my head I'll know the answer.
Now I bet you're thinking that my predicament isn't so bad, but think of all the things you can do that I can't. Simple things.
Or you may be thinking, "Why in the hell does Dennis live in a three story house when he can't get to the third or even second floor?"
I live here for one simple reason, it's my house and it's brand spanking new (built it about one and a half years before paralysis). If you think about it, there is no way to make my life completely normal even in a one story house.
That's why I don't advocate for inclusiveness, even though it's important.
I don't advocate for better access, even though that's important, too.
I advocate for the one thing that will truly fix the problems caused by paralysis, and that's a cure for spinal cord injury.
So don't forget to send an email to the California senators who will vote on Monday in regards to funding for paralysis cure research. Sign atwww.bit.ly/KOparalysis.
I respect your point of view, though I think it's likely to be a long, long time, if ever, before you'll see the second and third floors of the house you've paid for. Me, I put my time and resources into shaping an environment that is barrier free for my needs.
ReplyDeleteI think you may have missed the point of the blog.
DeleteThe point is that we can never make anything truly barrier free. No amount of ramps or elevators will actually liberate us, so therefore cure is the thing to put our energy into. You'll see that he mentions accessibility as something important.
I think that when some folks read things about cure, the don't actually read the whole thing but pick out bits and pieces to make it sound like cure is impossible. Could you please read the blog again and then respond (yes, the whole thing, not just parts that back up your thinking).
I was the poster whose comment you replied to. I've read both the specific post and the entire blog, and um, no, I didn't miss the point. I stand by what I said. I don't think cure is impossible, just highly improbable for chronic SCI. I can respect those who have a different view, but trying to make the case for more cure $ by taking shots (direct or indirect, I don't care which) at accessibility, accommodation-and-quality of life investments (see the toilet and the clothes-washing points) sets up a false dichotomy. The most fascinating thing about the cure fanatics is that they even deny this is what is being implied.
DeleteYou make some good points 8/23.
DeleteBut try to understand why some cure minded people become aggressive-They have been promised over and over again 5 years. Maybe it's time to focus on better research and not throw good money into clinical trials without good pre-clinical evidence. Case in point, a duplicate trial of ubc + lithium globally.
I have no problem being part of a cure movement that's sole purpose is to raise awareness for a cure. Keep it pure! What does concern me though, is that sometimes we may fall prey to those that try to capitalize on our desperation. It's easy to put someone on a pedestal who says he can fix you in a few years so no one would know you had a sci. That's why we must educate ourselves and have independence. I am very happy to see the effort Dennis is making.
ReplyDelete