Monday, June 15, 2009

Autube: A conversation with Stephen Drake

Well, if anyone is curious as to what the voice behind the typing sounds like, I am up live on a podcast on Autube.

Autube, funded by the Dan Marino Foundation, is "an issues-driven web channel enabling exchange of ideas for people with autism." The site is designed and operated by Kent Creative. The podcast is an edited version of an interview of me that was conducted by Jon Kent, president of Kent Creative.

A few words about the interview:
  • My intonation is uneven and my speech hesitations worse than usual - a result of doing the interview while imitrex and a migraine battling it out in my skull.
  • There are a couple of places where I laugh (kind of) and it might seem weird. In at least one of those places - talking about "aversives" - it was more of a nervous "tic" talking about something I hate looking back at, but feel I have a duty to do just that.
  • A lot of specific information about media coverage and advocacy groups was edited out of the interview. This is understandable but regrettable. Hence, the quote from a leader of a Canadian "right to die" group equating the length of a girl with cerebral palsy's life with a prison sentence is mentioned. Also missing is a lengthy discussion of the coverage of Katie McCarron's murder - and the role that specific advocacy groups played in promoting a "blame the victim" theme in coverage of her death.
  • Finally, this is in audio only. The site is a new one and they are working at providing print transcripts of podcasts.
So, for anyone who is interested, here is a discussion of some of my journey through life and the advocacy work I do now:

A conversation with Stephen Drake (mp3 format)

That's all for now. --Stephen

Wednesday, June 3, 2009

Minefields, stumbling and explosions

Well, I made it through the conference. But, as the title suggests, I didn't do it without managing to set off a few "mines" of the social variety.

Some of it was unintentional. At a preconference meeting, I have it on good authority that at least one of my contributions came off as interrupting, slightly off-topic and maybe rude. That's me when I'm trying to behave.

I've written a long account of the major events that sparked some explosions in the NDY blog. Here's an excerpt describing a key event I want to discuss here:
For me, things came to a head on the first day when a representative of the LaRouchePAC stepped up to the audience question-and-answer microphone. He read a piece of crap he called “research” that labeled Obama’s health care plan (what we know so far) as a “Nazi plan.” To my disgust and horror, over half the audience broke out into applause over that.

(Note: Below, "Alex" refers to Alex Schadenberg, who is the E.D. of the Canadian-based Euthanasia Prevention Coalition, which organized the conference.)
I took Alex aside and told him that he had no idea what just happened and how bad it was. The LaRouchePAC is one of several entities attached to Lyndon LaRouche, conspiracy enthusiast. Pretty much no one of any political stripe who wants to be taken seriously becomes associated with the man or his group. (BTW, the guy from the PAC got in for free with a “media pass” – probably from his home printer, and then did the un-journalistic move of leaving promotional materials. He also didn’t ask any questions. Maybe this gives you an idea of the ethics – or lack thereof – in how they operate.)

Alex let me take the podium in response. I can’t remember everything I said, or the argument I had with the guy from the PAC. But I knew it wouldn’t be enough, especially with repeated exposure to material that had nothing to do with euthanasia and assisted suicide.
There are a few things I should share here about what went on within my brain and body during this short span.

I don't get panic attacks, but my body can do a good imitation of one in high-stress situations. When I know I am heading into a high-stress situation, I take a beta blocker in advance. That medication dampens the bodies response to stress hormones and adrenalin.

Stupidly, I had not taken one that day.

So, when I went up to Alex, I did so knowing I was risking a full-scale physiological rebellion. In fact, when talking to him and when I went up to the podium, my legs were shaking badly and I was having trouble controlling my breath. Fortunately, it didn't escalate into facial contortions and even worse problems with breathing. I may have looked enraged rather than alarmed and pissed, but I looked in control.

And it was necessary - letting it go would have signalled acceptance or approval, making the work ahead much more difficult. That includes damage control.

As you can read on the NDY blog, I followed up with more of the same the next day, this time with a body becalmed with a beta blocker.

As you might imagine, some in my audience - justifiably - heard what I had to say as a criticism or even attack on them. This is seldom done in the context of a "coalition."

Thing is, I am more likely to go there than most. I understand the power that group dynamics play in the lives of people. I understand a lot of it intellectually. But I don't feel the pull - emotionally - to maintain the appearance of unity, cohesion and solidarity at any cost.

On the one hand, it leaves me freer to see when it's appropriate to break from the group. OTOH, it means I am vulnerable to underestimating the cost of breaking those norms.

Fortunately, I have someone who "gets" those dynamics in a more conventional way. When I lay my case out and Diane says she agrees, then it's always been a good move - or - to be honest - the least bad one.

S'all for now. Gotta go on another longer drive tomorrow. Be back Sunday night and hopefully posting again next week. --Stephen