The Cures
Dohn Hoyle, Partners in Policymaking Faculty Member, Activist and Organizer
30. The Cures
I am just anxious to get to the other one. Through the years I've been at this people have come at the whole issue of disabilities as though there might be a remedy. That there might be a remedy for the disability itself, as opposed to a remedy for the fact that society has set up the disability. And in lots of those cases I've heard them out, but I've not bought in, just in part because there's some, there's a basic injustice for the way we face things in the first place, and that needs to be remedied. And that is where I think our attention and I would hope money would be spent.
I worry about cures in part because it seems like every cure demands resources. Every possibility of a cure, every, it's all con- They add the word research if they need to, whatever to try to raise money. And, as they do that, part of what they do is to raise the pity specter. And that damages the people who already have the disability and who are unlikely to ever lose the disability.
It also damages efforts on their behalf. And what ought to be our responsibility to clean up our act as a society. I worry about people proffering cures both when there is no cure and when they believe it, even though there's not the evidence for it, or even if they think they have found it and believe it and think there's evidence for it. It's still that issue of, is that what we should do? So, we write off everybody else then or I mean, I think people are too often looking for an example of the cure.
And in many cases that person gets a lot of attention, et cetera, et cetera. And my own experience is that most of them didn't have a very significant disability or weren't very significantly impaired to begin with. So they were, I'm not sure what they were cured from. I say that even in spite of fact that some people are gonna say that's wrong. There are some people who are really significantly impaired. I'm just, I just haven't seen it.
And I'm always leery of anybody who offers a cure. I'm always leery of people who are raising money on behalf of a cure. I'm always leery of generalizations about that. So when it comes to cure, for me it's a questionable approach. And I'm not gonna list those that have been debunked. I'm not gonna, I'm not going to go through that process with you right now. But I will tell you that for every time anybody's come forward with one of those I've got a time when somebody else, it didn't happen for them, and held out false hope to people, and that is damaging both to the the person then or to the parent then. That is damaging to those who are not believed to be able to be cured, it's damaging to those who aren't gonna be cured and therefore but still need supports. I worry about this whole cure mentality.