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in Autism Network International, our first stab at a self-advocacy group. http://www.ani.acI'm not that surprised that you perceived Steve as "getting stomped" by an adversary who does not have autism. Perhaps Steve's comments will read better in the transcript: http://www.democracynow.org/article.pl?sid=05/03/22/1529259#transcriptSTEPHEN DRAKE: Well, I wish I could say I was surprised. I think by this time, you know, the judiciary where, you know, whoever they are, you know, are kind of seeing this as, you know, especially the way it's being framed as an assault on the courts, whether that's true or not. And you know, one thing I would actually agree with is that this has been portrayed as a partisan issue. And of course, with the groups that I'm affiliated with, you know, we see it as a much more complicated than that. It's really not surprising that we'd see this many judges, you know, siding in this way in a case like this. This is historically a pattern we've seen. I mean, it goes way back, if you look back in the mid-1980s, you know, two separate judges signed off on the starvation death of an infant with Down's Syndrome. Something that is recognized now as something that's unconscionable. But you know, back at that time, they had no problem doing it....
AMY GOODMAN: Stephen Drake of the disability rights group, Not Dead Yet. This whole issue of whether Terri Schiavo is in a persistent vegetative state, and the question of what people decide when they say, “If something happens to me.” And talk about what they want done.
STEPHEN DRAKE: Yeah. I find it fascinating when people talk about how clear a so-called diagnosis, persistent vegetative state, is. Just about a month ago, The New York Times had an article on some recent research about looking at people with so-called minimally conscious state, looking at unsuspected neurological activity. And there, a fairly mainstream bio-ethicist, Joseph Fins was quoted as saying as an aside that with persistent vegetative state there's a 30% misdiagnosis rate. Which means, you know, that --
KEN GOODMAN: It’s nice --
STEPHEN DRAKE: Anyway, that there's this whole unrecognized field that, you know, after this short, intense period of looking at people, you know, for consciousness, people tend to stop looking. And in various studies over the past 15 years, they found groups of people, when people have gone to them, either technologically or through intensive evaluation, that a significant number of people who get labeled as permanent or persistent vegetative state, in fact, are not. But it takes a lot of work to detect that they're not....
STEPHEN DRAKE: There's always been a problem when it comes to third party decisions. I mean, these are the same kind of noises that were being made, you know, what, 20 years ago, when it came to what was a fairly widespread practice of killing off infants with disabilities through with holding withdrawal of treatment. Again, those got defended as private, painful decisions between doctors and families. And, of course, you had the same uncomfortable alliance, you know, of these conservative pro-life groups and disability groups, you know, who find themselves, you know, opposing these things, not there for the same reason, clearly a different political agenda. You know, we're looking at rights. I don't agree with the judicial activism label, don't agree with this being a religious issue, don't agree, you know, with this being a conservative issue. To us, this is a rights issue. It's the rights of people under guardianship.I didn't do a word count, but it looked to me like Ken Goodman got a LOT more air time than Steve. This parallels my own experience trying to make myself heard at meetings dominated by "neurotypicals", our sardonic term for those who do not have autism. |
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