[This is the eleventh 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.]
Here is Bruce Uditsky, executive director of the Alberta Association for Community Living, on the hurt that people with developmental disabilities feel on being denied the right to parent, and on the kinds of choices that we allow in our society. The latter comments here reply to some of what Simo Vehmas said in his panel presentation, shown as “Bioethical reflections on disability, medicine, and family life” earlier in this series, and Simo makes a further reply, in turn, here. A transcript follows the video.
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 week or so in this post, as we complete posts in the series. If you have trouble loading the clip above, you can try directly from Youtube here.
Bruce Uditsky: I wanted to raise a couple of points, actually. One is with respect to Colleen and Anne’s presentation. That there seems to be in a sense a public understanding of the horror of sterilization, that particularly that this province has become infamous for. Both because of the false science as well as the idea of what was done to people. But what I found interesting is when I was talking to people over and over again who had been sterilized is they didn’t focus so much on the false science or even so much on the eugenic idea, as the fact that they were personally denied the opportunity to parent. And in fact, they would frequently refer to that wounding, of their soul if you want, at being denied that. It’s not that every person with developmental disability can parent, of course, but that’s also true for people without developmental disabilities. It’s that I don’t think, while we take this firm stance as a society to a greater degree today, I don’t think we’ve come to a place yet where we understand or have the capacity to see that people with developmental disabilities can parent and should be supported to do so. And in fact, the denial of that parenting in fact is as systemic in some ways as sterilization was today. And it’s true in fact across cultures, we’ve done that research. So it sort of is a way of challenging us who stand in opposition to things like eugenics, but have not quite reached the level or place of standing beside people with developmental disabilities and their desire to also potentially have a family of their own. The other is that, just to maybe provoke or stimulate a little bit of debate around your comments, Simo, if I can use your first name, I’m Bruce by the way. And that is the idea that information for example could either be neutral or provided in a way that actually allows people to make a choice. One is of course that I don’t agree that that choice should be enabled in the first place, so I can state my bias up front. I think that in the case of selective abortion, at least in the Canadian context at the moment, we’re pretty clear that it shouldn’t be allowed. And in fact it is illegal on the basis of gender, because we have a position that even though we have prejudice in gender in our society, that says that would be immoral and wrong, and would in fact jeopardize those to which we’re generally prejudiced, which is women. And so we don’t allow selective abortions on the basis of gender. I think if we held the same view on disability, we could argue it’s not a question of information, it’s a question of saying what’s moral and right and it isn’t right to allow abortion on the basis of disability. Nor do I believe information in fact could ever be neutral in a context where there is such systemic oppression and devaluation, that the information will always fail, and so you’ll still get large percentages of people choosing to abort until we change that oppressive nature. The other was about maybe there are some things doctors shouldn’t be allowed to do. I couldn’t agree more. But in your argument it was they shouldn’t be allowed to sustain life sometimes, because it maybe isn’t sustainable. And there are moments like that. But if we can limit them from doing that, we can potentially at the same time just as logically argue that they should be prevented from doing other things. So I don’t think we can argue that they should be allowed this but not that. Now, if we can draw lines on that point, we should be able to draw lines on when life should be valued and sustained.
Simo: Well first, just briefly about the doctors, what’s the matter with doctors, we have to remember that doctors replaced clergy in the 19th century as THE social authority. And there is a tendency of omnipotence and great arrogance in doctors. That’s true. And they tend to think too often that they know better than patients what’s wrong with them, but not all doctors are like that, and things at least in Finland, I’m not sure whether it’s very helpful to, well I don’t know about Canada, but I get the picture that things are really horrible here. But at least in Finland, no, there’s no eugenic movement. And I’m not sure whether it’s very helpful to say that. Things are very different now than they were in the 1920s and things have improved a great deal and I think that should be remembered. And as for selective abortion, I think prohibiting, denying parental autonomy in that respect, would create really harmful practices. It is problematic, yes, that the sex-selection we consider to be wrong, why not on the basis of impairment. Well there are quite a few issues. First of all, how are they, is it a fair analogy? I think in some respect it is. But I think the easiest way to solve the issue would just, it would be free abortion. You can abort your fetus, you can terminate your pregnancy for reasons, whatever reason, and you don’t need to provide any reason for that. Because the problem is, at least in Finland, you can terminate on any reason before the 12th week and then after that it’s just on the basis of impairment. And that makes it really problematic. But if for any reason you could terminate a pregnancy then there would be no problem of equality.
Sam: Maybe that’s why with the 99% abortion rate of trisomy-21, there doesn’t need to be a eugenics movement post-natally in Finland.
Simo: Well, there are kids still being born with Downe’s Syndrome. Not all women do take these tests. They don’t all take them and the tests are not perfect besides. But, I would seriously advise thinking hard before aiming to prohibit selective abortion and whether it’s the right way to create a equal and just society. And then you have to think who would it serve? Would it serve people with disabilities? And the price for trampling upon peoples’ autonomy, is that a price that we’re willing to pay?