Disability, Individual Autonomy, and Systematic Devaluation

[This is the thirteenth 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; we’ll string together all posts in this series when we have most / all of them up, or you can search by the category “Modern Pursuit” to get those already posted.]

At last, the final question and exchange, another one from Bruce Uditsky, with subsequent lively exchange, that follows on from the preceding pair of questions. Transcript below the fold.

Sam ends the session with the following: “It’s a good thing that you’re doing this now … we better have this figured out before we know more about how to save lives.”

We’ll put the whole string of posts together in a final post shortly. Enjoy!

Note that there is no sound in the first 30-40 seconds of the clip, which simply contains the title of the clip, the name of the speaker(s), and the location of the symposium, information that is provided in the beginning of this post. A transcript for this clip, together with that all talks in this series, will be posted within the next few day, as we complete posts in the series and put them up in an omnibus edition. If you have trouble loading the clip above, you can try directly from Youtube here.

Transcript:

Bruce Uditsky: Well, I don’t think we’ve all used the word “eugenics.” I think Dick’s… we know, most of us, what the technical definition of “eugenics” is. That’s not what the argument is actually about, really.

Dick Sobsey: But, that’s all that I’m saying is that…

Bruce: You’re right.

Dick: …when we’re arguing with people and they’re saying “Oh no, we’re not eugenic, because that’s not what we’re doing,” when in reality that doesn’t make us like what they’re doing any better. Yet they don’t define it that way.

Sam Sansalone: There’s no point offending people if you’re trying to persuade them.

Bruce: Well I’ve never held that view, but… (laughter) I think the deeper issue if you want is the idea that what this is about actually. Is it about, for example, you know individual autonomy or parental autonomy, etc.? Or is it about something, a different ethic actually or other ethics. And I think in fact there is systemic devaluation of people with disabilities. It’s evident pretty much universally. And I think it’s represented in some of the actions that are taken to actually shorten or end lives and prevent people from even being born. And I think that is much different maybe than simply, individual autonomy may be wrapped up in there, but I think there’s a bigger systemic issue both conscious and unconscious within human beings and their societies, and that we’re struggling… Those of us that hold one view are in fact struggling against the dominant view that doesn’t value people with disabilities as being equal and necessary to the human race, actually, for the benefit of the broader community.

Simo Vehmas: I agree. I think there are two points. There’s a normative dimension and an empirical dimension here. First of all, people in general tend to think that people with impairments have miserable lives, that impairment wrecks up your life. And that’s based on stereotypes, based on the fact that most people haven’t met disabled people in their lives, people with disabilities have been segregated, excluded from communities, etc. etc. And another point is a normative point that, what makes people think that impairment is so horrible? What do they actually value in life? And I think that these two things that need to be… I think most people don’t even really think about these kind of things. They just assume that impairment is awful and it will imply a bad life. And I’m confident that most people don’t think any further.

Anne Hughson: When you use those things, you use the term normative, to take a moment to tell us about the history of normativity. Well just speak a little bit about what is the history of this notion of normative. Because it has a specific history, too.

Simo: I’m not sure what you mean… The history of normativity, in the Western conception or Western philosophy, there’s certain conceptions of what is a good human life. And we tend to think that that includes that you have five senses, and you can move around, and especially that you can think clearly, reason, and understand what Plato wrote. So, and there’s a long history not just in Greek, Roman philosophy, but also in Christianity. It’s the mental capacity that makes us human, that makes us the picture of God or whatever, it’s the thing that’s in the Bible. So, and these are very deep rooted ideals and norms about human beings.

Sam: So what do you call it though, when you do have a statistic, I did the numbers myself, I can look at Ontario birthing rates, U.S. birthing rates, survival rates of these kids with trisomy-13 and 18, U.S. versus Ontario. They didn’t line up. Something is happening in Ontario that isn’t happening in the U.S. statistically. So, there is a disposal of children who have low I.Q.s. That’s the reality. They are disposing of children, by killing them, or allowing them to die, or withholding…

Simo: Is this public? Is this public knowledge? Do people know this?

Anna Macquarrie: Yes and no, and that’s part of the challenge I’m trying to raise, in the sense that we continue to allow it to be seen as one family’s experience, and when it gets brought up doctors and ethicists and people say, “oh my goodness, that never happens, that’s so rare,” but when you talk with families, it happens all the time.

Sam: And you know what, this is growing as an issue now, this is what I think. Medical science has progressed to a point where we can save their lives, trisomy-13-18, they wouldn’t live. Like, my daughter wouldn’t be alive even 40 years ago tetrology of flow repair of the heart was not a routine operation. Now anybody gets it. Any child that has tetrology of flow, they’re not going to die, because there’s a simple-not simple-it’s a sophisticated, but routine… So, as medical technology develops and advances happen, this is going to be an exploding issue. We’re just seeing the beginning, in our society, of what I think is going to mushroom at this rate, if these medical advancements continue to enable the saving of lives of developmentally-type disabled kids who would have otherwise died because of biological reasons, you know failure of heart. So I think it’s an interesting observation, but you’re hitting on something here that’s of more… extrapolating to the future, I think there’s… it’s a good thing you’re doing this now, is what I’m saying because we’d better have this figured out before we know more about how to save lives.

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