This post kicks off a series of posts at What Sorts that we hope will appear every Tuesday and Friday over the next few months called Thinking in Action. In the first instance, this series will offer commentaries on talks and discussions at the recent conference Cognitive Disability: A Challenge to Moral Philosophy. The aims of these Thinking in Action posts will be to generate and advance discussion of specific issues that arise in taking up the themes of the conference. The posts will typically feature a relatively short clip from a talk or discussion at the conference, followed by a commentary; transcripts of all excerpted video clips will appear at the end of each post. In light of our experience with this first (extended) round of posts, we’ll see whether we continue the series with clusters of posts with other thematic focuses. We will both tag and categorize each post with the series label “Thinking in Action” so that you can review them together, if you like, and we encourage the use of posts in the series in classrooms, in local discussion groups, and in organizations at the interface of government, university, and community. We will aim to make each of these self-contained, with the conference podcasts themselves serving as a larger reservoir of perspectives on cognitive disability on which you can draw. We hope that you will join in the discussions, both on the blog and beyond it.
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As one might expect, Peter Singer’s talk at the conference Cognitive Disability: A Challenge to Moral Philosophy, presents ideas that Singer is well-known for. Amongst these are views that draw parallels between animals, on the one hand, and individuals with disabilities, on the other, especially those with “profound mental retardation”, a medical category that includes, amongst other features, having an IQ of 25 or below. I want to kick off this series of blog posts not with a discussion of that general comparison—though Dick Sobsey might well take that up in the next few posts—but by concentrating on something in Singer’s talk focused on the issue of parental rights and disability. Here is Singer, toward the end of his talk, presenting the perspectives of parents. Singer points out that, as a group, parents of children with disabilities divide over their views of their own children. Although it is a little unclear, even from the fuller context, precisely what “this issue” is that parents divide over, it concerns pain, death, and quality of life:
[This clip is from Singer’s talk at the Cognitive Disability conference, podcast #15: 33.30 – 38.02] If you are having trouble playing the video above, the full transcript is provided at the end of the post, and you can also try Youtube directly by clicking right here.
I want to raise three points about what Singer says here.
The first is that although Singer is ostensibly concerned, in this talk at least, with cases that involve “profound mental retardation”, he introduces a range of cases in making the points he wants to make about parental choice and disability. He starts off with a consideration of Down Syndrome, moves onto cases that involve cerebral palsy (together with further complications), and ends with a brief discussion of the Ashley X case that we have blogged about in the past at What Sorts here and here. Of these, only the Ashley X case is one that either exemplifies or approximates one involving profound mental retardation; it is perhaps the only of these cases that involves a level of cognitive disability that many would regard as more than mild. (Not enough of a description of the second case is provided to allow one to make a definitive judgment here, though amongst the complications that come with cerebral palsy, “profound mental retardation” is very rare, and severe cognitive disability unusual; the parent’s own report of what she would have done, that Singer provides in part, does not determine that issue, a point that I’m happy to talk about more in discussion if anyone is interested.)
Why such a range of cases then? Well, that depends on what Singer’s general point is here. And that, in turn, depends on how one should understand his claim that “parental choice ought to have an important role in decisions. At least in decisions for those with profound mental retardation, maybe in others as well”. This can be made to sound trivial, as his parenthetical “obviously” in several places suggests: parents need to be consulted and deeply involved in decisions that are made about their children. This makes it sound as though the point is one about ensuring that parents of children with cognitive disability are afforded the same involvement in care for, and the guidance of, the lives of their children as are other parents. But what ARE these “decisions” here? Well, some of them might involve allowing your child to die, and others (like the Ashley case) to actively intervene to radically modify that child’s body in a way that would clearly be unacceptable were the child “normal”. Thus, rather than making a point about equal treatment, Singer here is surely making one about extreme decisions, decisions that simply would never come up in cases that do not involve cognitive disability at all. But then how are we being encouraged to think about cases that are not normal, in this case, those that involve babies, infants, and children with cognitive disabilities? If Singer really IS concerned primarily with cases involving “profound mental retardation”, as he says, then the views of parents of children with Down Syndrome or with cerebral palsy seem at best only indirectly relevant, if relevant at all, if not an outright distraction. But what about that ominous-sound “maybe in others as well”, suggesting that parental choice in “decisions”—such as the decision whether to keep a baby alive—extends into the realm of cognitive disability more generally? I don’t think that Singer can have this both ways, especially when it comes to the rights that parents have over their children on issues of whether those children survive, especially in a world (including a medical world that, in turn, has a huge impact on parental attitudes) that discriminates strongly against those with even very mild forms of disability, cognitive or not.
The second point concerns something that I was very surprised to hear near the beginning of this clip. Talking about what we might call pro-Down parents, parents like Anne Bradley ,who like their children so much that they wish “all their children had this extraordinary syndrome”. Singer says, “that’s fine for parents who have that view and make that choice”. Although Singer grants this concession in order to make the point that since “the views of parents on these issues go in both directions”, and so an appeal to “parental views” doesn’t resolve the issue in favour of protecting and promoting the lives of those with cognitive disabilities, and so against those who think that those lives need not be protected or promoted, I was struck by the concession itself. Does Singer really think that parents should have the right to actively promote conditions that many in society consider to be disabling? I haven’t managed to track down Singer’s views on, for example, cases involving deaf couples and their non-deaf fetuses, babies, and children, but I’d be curious in knowing whether this was a slip up here, or whether Singer’s endorsement of parental rights is really as strong as it sounds here. Taken at face value, it sounds as though Singer’s endorsement of parental rights–at least when it comes to cognitive disability (“profound mental retardation” only?)–gives it a reach that many would find contrary to respect for the basic rights of the infant or child.
The final point concerns Singer’s brief mention of the Ashley X case. Singer doesn’t have much to say about this, and what he does say may not seem that central to his broader message. But what struck me about this most immediately was the incredibly casual way in which Singer appropriates the case. Here’s a recent and ongoing case in the Seattle area, one likely involving a hospital’s violation of its own ethical protocols, surgical interventions that have only the most scant medical basis as treatments, and the violation of the right to growth that supposedly all children have under a number of charters of human rights–probably the best coverage of the case can be found at Huahima’s Ashley X Case blog (recommended: read it from earliest to most recent entry). And what does Singer extract from it? Only the proclamation that Ashley’s life is not one with dignity (in the sense in play), and the seeming endorsement of the parent’s rights to make that choice for their daughter, construed in terms of her “best interests”. I wonder how someone can afford to be both so cavalier about the case, so either unaware or unconcerned about any of these issues (and others) that arise in the case, and so sure that this represents a case in which parents have rightfully exercised their rights over, and acted in according with their duties to, their child. We don’t need to go to cases as extreme as that of Robert Lattimer to raise questions about the sorts of choices parents exercise that affect the lives of their children–indeed, whether they even have lives, and the basic rights that typically go with those lives. One can, of course, use an example, real or imagined, for whatever purposes one wants, but how one chooses to use these, what is extracted from them, does reveal something about what is seen as important and worth drawing attention to. The banality of Singer’s own discussion of the Ashley X case is perhaps what I find the most disturbing thing in his whole talk.
Transcript of the Video Clip: Peter Singer
“Now let me say something about the views of parents on this issue. Because that, of course, is relevant. And this is something about Down Syndrome. Obviously, people with Down’s are not profoundly retarded; it’s not the kind of category I am talking about at all. But I did want to just give you a couple of comments that I’ve had when I’ve spoken about this issue, in terms of the views that parents have. Parents obviously do have a say in how their children should be treated, and I think that that’s tremendously important. So that in debates about, for example, infants born with Down Syndrome and other complicating conditions that required surgery, some parents have said that they didn’t want surgery performed because they didn’t want to have a child with Down’s. Other parents have said that they did. And some have said, as Ann Bradley has said here , that some people with children with Down syndrome wish that all of their children had this extraordinary syndrome, which replaces anger and malice, deletes anger and malice, replacing them with human thoughtfulness and devotion to friends and family.
So that’s fine for parents who have this view and make that choice obviously. But there’s also the contrary view that I’ve had expressed to me in letters when I’ve … when my views have been publicized on these issues, about parents whose children have been saved by doctors when they were born, in this case, an extremely premature baby, although not actually as premature as many who are saved now, but who have had a lot of problems. And this woman wrote to me that had she known what was in store for her son, and had the doctors asked her whether they wished to incubate him, in other words, to keep him going on the ventilator so that he would survive, she would have said “No”. She would have would have said, that would have been a gut-wrenching decision, but it would have been for the best, both best for her son himself, and for the family and the other children. So, the views of parents on these issues go in both directions. And I don’t think, therefore, resolve the question in a way, if you like, in favour of protecting life, in all cases. Rather, the arguments that I have suggested imply that parental choice ought to have an important role in decisions. At least in decisions for those with profound mental retardation, maybe in others as well.
I want to mention also the case of Ashley that received a bit of publicity last year, for those of you who heard about it. This was a case of a girl in Seattle. There was some dispute about how profoundly or severely her cognitive disabilities were. It was said that she can’t walk or talk, keep her head up, roll over, or sit up by herself. She was fed with a tube, she didn’t swallow and the case was controversial because her parents used growth attenuation to make her, to keep her small, and make her easier to care for, which involved operations like hysterectomy, removal of breast buds, and some hormone treatment, to … so they could still pick her up and keep her with them. And they said that this was in her interest, for her benefit, so that she could travel on family holidays with them, and so on. Also, they said it would protect her from possible sexual abuse. Now, it was a controversial issue. But one of the things that I don’t really agree with is the claim made in this Los Angeles Times article about it, which says that “This is about Ashley’s dignity. Everybody examining the case seems to agree at least about that.” Well, I mean again, as I a said before the term “dignity” is a very vague term. I would say that it’s about what’s in Ashley’s best interests. We are prepared to use the term “best interest” for animals without too much hesitation. We know what that means . We’re not prepared to use it for nonhuman animals . And I don’t really think that someone as developmentally disabled as Ashley is described as being is actually someone with dignity in a sense we’re prepared to deny to nonhuman animals.”