Vulnerability, trust, and confrontation

[This is the ninth post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. For further context, please see the introductory post in the series, which can be found here; Part 1, containing the video clip, was just posted.]

Here is Part 2 of the response to the question about vulnerability, trust, and confrontation. Sam talks about the variation in responses he has experienced from both bioethicists and doctors, and links some of these responses to a continuation of eugenics by other means. Colleen supports this, and brings us back to reactions from one’s own family. Transcript below the video.

Anne: And just to add to that in terms of some of the research we do know about that. Many of the children in foster care who have disabilities have many many placements, so they move from foster care to foster care, so it isn’t uncommon to have 6-8 placements during their time in foster care. And they are very very rarely adopted and they would hardly ever be put on an adoption list to pursue a permanent placement. So, I think those are other aspects to that point.

Sam: Rob, your question about what sort of reactions our advocacy engenders, it was a real memory-inducing question for me. In broad strokes, very wide range of reactions. Very wide range. And across the different people who were there to react and even within individuals there would sometimes be a very wide range. It was extraordinary actually. I think where I saw the widest range was actually within the bioethics community, yeah, if I’m looking at it from a philosophical standpoint. I had some excellent assistance from them and some of the most disappointing experiences of my life with them. And my perspectives can be a bit different when I had these experiences compared to now, because at the time I had no idea there was that in the late 20th century, we were actually having a eugenics movement in Canada, the thought never entered my mind or imagination. It didn’t hit me until I saw it with my own eyes. And when you’re confronting people on something like that it’s a pretty controversial-sounding issue, and you get a wide range, from offense to intense condescending “we’re here, you’re there, you listen to us” type reactions. One of the more extreme reactions was how when we were trying to implement every intervention necessary to keep Katya alive through that critical early period one of the key doctors at the hospital actually said he had had enough of it and that he intended to do something about me because I was being cruel to my daughter keeping her alive. So there was intimidation, and he knew this was baloney, this is a celebrated author in neonatology, he knew the truth, but he used intimidation absolutely. That was one of the reactions. On the positive side, some of the nurses and a couple of the doctors were extraordinary human beings that just, you could see their humanity coming through and people that would not be capable of overt dehumanization, so that there are very encouraging moments. Some excellent people, even at that hospital I think the majority are wonderful people, it’s an amazing facility, but you have a small percentage of very influential people who are lacking in integrity. It’s that simple. And they are dangerous, they are dangerous to a certain segment of our society that are most vulnerable. You know, it’s said that societies are historically judged by how they treated their weakest members or, I would prefer to say, their most vulnerable members. I think individuals should be judged that way, too. And I think they are. It was a wide range, I’m sorry I’m get a tangential here. I’ll give you a few examples. One physician I remember who was trying to have an academic, medical approach to confronting me on my confrontation and advocacy for Katya, I remember her saying that in her country, she was I think from Eastern-Europe, they had come to the point where they believe that doctors act like the hands of God in making these decisions. Which, the bioethicist was pretty upset about obviously. The bioethicist, oh wonderful experiences truly, and very negative experiences. There was such a duality, there is such a duality I have observed in the bioethics system, that it scared me, it made me fear or grieve for humanity. Mind you, an observation my wife made is, it’s not even set up correctly. A bioethicist at a hospital actually reports to the people that dictate policy about how to treat, how to basically further this eugenics movement, that’s I think what’s really going on. And, I’ll give an example, when Katya, it was a few years later, was in a very critical situation, where they had made some errors and they had put her in the wrong direction medically and I had to build a case medically for why this was the wrong intervention and has to be stopped, and I asked the bioethics department for their assistance, they allowed her to come to the meeting with the VP of the hospital and one of the key directors there, that you know, again, these are celebrated people known across the country. And I had a chart on my computer to prove by TDM levels and the rate of seizures and all that that they were doing something that was going to kill our daughter if they kept this up, potentially, and they had to go in a different direction. I turn my computer around, notebook computer, to show it to this very high level medical director, she slapped it down. I couldn’t understand why the biomedical ethicist never said anything, I would even asked her questions, not a word, boy I don’t know if I should say this publicly, there was a reason why she didn’t, you know what, I’m going to say, she was told not to. She was told not to say a word. So what is the value of a bioethicist? It’s like, if Hitler had had bioethicists, what would they have accomplished? I think there’s a flaw in the system that has to be addressed, and then you’ll get different reactions of the sort you’re talking about. I think we can correct the dynamics that happen there if they’re analyzed openly and people in positions of power are made to follow standards of integrity that they’re just not following. And in that case it wasn’t for developmental reasons or disability reasons, it was because there was a cover-up going on. They made a big mistake, they almost killed Katya. This was the way they were going to deal with it. So, and I know that happens a lot with non-developmentally delayed children if you look at the Lisa short-story, there’s a lot there…

Wendy: I would say my answer is the same. It was so broad. It’s interesting because when I got my gynecologist I felt lucky and then when I realized the things that we wanted for treatment, we just felt “lucky to have a doctor” who would see me through the pregnancy, that still would make decisions along the way. Where our change came was actually when we entered neonatal intensive care and after Kyle was born all of a sudden the care was amazingly aggressive. They would do anything to keep him alive. So, again, it was broad, and not only I would say in the medical community I think reaction even from, that I struggled with personally, was from family and friends about our decision. And some of that has been in retrospect, actually. I don’t think I truly even understood it at the time. But it has come, Kyle is now 14, so it has certainly come out in the last 14 years.

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