[This post is the second in our new series of Thinking in Action posts, the series being devoted initially at least to discussion of talks at the Cognitive Disability conference in NYC in September.]
Following Rob Wilson’s Singer on Parental Choice, Disability, and Ashley X , I wanted to add a few thoughts of my own about Peter Singer’s talk at the recent Cognitive Disability: A Challenge to Moral Philosophy conference. These comments address issues in parental choice and the protection of universal human rights.
Clip 1: Cognitive abilities and moral status. A transcript of this video clip appears at the end of this post. Some parts that are particularly relevant to this post appear in red letters.
Dr. Singer suggests that parents should be allowed to make whatever decisions they consider in the best interests of children who have severe disabilities. This is based on two important assumptions: (1) Parents can accurately determine the best interests of their children, and (2) Knowing their children’s best interests parents will choose to act according to those interests. Before examining these assumptions in regard to the particular case of children with disabilities, severe or otherwise, we need to examine these assumptions in regard to other children.
Clip 2: Parental Choice and Ashley X. A transcript of this video clip appears at the end of this post. Some parts that are particularly relevant to this post appear in red letters.
Do parents always know what is in their children’s best interests, and as a society do we grant parents the unlimited right to determine those interests? The evidence clearly demonstrates that the answer is “NO!” Most parents act in their children’s best interests most of the time, but many parents honestly believe that beating their child severely helps their child. A significant number truly believe they are helping their children by denying them life-saving transfusions for religious reasons, and some others genuinely believe their daughters will have better lives as a result of genital mutilation.
In one high-profile murder case, a mother explained that she believed it was better to drown her two sons than to allow them to suffer through the turmoil of their parents divorce. In another believed that it was better to drown her five children before they were old enough to be stained by sin. These cases may seem bizarre, but repeatedly psychological studies of parents who kill their children tell us that about 50% of cases are such altruistic filicides meaning the offender believes he or she is acting in the best interests of the child. A few people may endorse this kind of parental choice if these parents honestly believe they are doing what is best for their child, and argue that society should not interfere. Society, however, only allows parents to exercise parental choice within limits. When society believes that parents are doing serious harm to their children, we step in to protect children. We are no longer satisfied to treat children as mere property of parents.
In Dr. Singer’s presentation, he suggests that the parents of Ashley X are acting in their best interests because they believe that removing their daughter’s breasts (note that Dr. Singer uses the euphemism removal of breast buds – medical and billing records call this bilateral radical mastectomy), sterilizing her , and stunting her growth will somehow “protect her from possible sexual abuse.”
As someone who has spent more than two decades studying sexual abuse, I want to be very clear that there is absolutely no evidence that mutilating the bodies of children to make them less attractive to potential sexual offenders offers any protection against sexual abuse and exploitation. I know of no respected authority on sexual abuse who would endorse such action under the guise of child protection. On the other hand, I know of many child protection experts who believe that respecting the rights of the child and the integrity of the child’s body is an important element in preventing sexual (and other abuse). Hysterectomy easier to conceal, but there is no evidence that it inhibits its occurrence. On the other hand, there is actually clinical and research evidence that recognizing the rights of children and respecting the integrity of their bodies reduces the risk of abuse, and this does not require intrusive and painful surgery. Similarly, there are many millions of parents who believe that altering their daughter’s bodies through female circumcision and genital mutilation protects them from sexual exploitation and abuse. This too is a poor substitute for respect and protection.
Another large group of children are maltreated by parents who know that they are acting against their children’s interest and do it anyhow. The year when Canadians are most likely to die of homicide from birth zero to one-year-old. In the United States, about 10% of all childhood trips to emergency rooms for injuries are a result of maltreatment, and, as a group, the injuries that these children sustain are significantly more serious than those sustained accidentally. Approximately 65% of severe brain injuries in infants is the result of intentional injuries. The World Health Organization estimates that on our planet 155,000 children, age 14 and younger, die each year as a result of child maltreatment. Biological parents are responsible for 80% of this maltreatment, while stepparents and adoptive parents are responsible for another 15%. A recent study published in Lancet concluded that each year between 4 and 16% of children are physically abused, and between 15 and 30% of girls and 5 to 15% of boys are sexually abused. Dr. Singer may feel that these parents should be free to exercise these parental choices but society steps in to protect typically developing children from parents who want to abuse or kill them. Society no longer simply accepts the ideas that “father knows best” and that children are simply personal property of their parents to be used or disposed of as parents see fit.
The obvious next question is whether children with intellectual disabilities should have the same protection as, less protection than, or more protection than other children. Dr. Singer seems to suggest that they should have less. Unless he honestly believes that it would be fine for the parent of a typical child to choose to kill the child or subject the child to intrusive surgeries with no medical rationale, his position that these things should be left up to the parents of children with disabilities clearly is a call for less protection. Notice he says that parents should be able to make these decisions “for those with profound mental retardation, maybe in others as well.” One potential reason for suggesting that less protection should be given is the belief that less protection is required because there is less risk of maltreatment. While there are many studies that provide evidence that the risk of abuse or neglect is higher for children with intellectual disabilities than for other children, two major studies stand out for their excellence in design and execution. In 2000, Sullivan and Knutson reported on a large cohort (50,000+) of school-aged children in Nebraska, and in 2005, Spencer and Colleagues reported on a large cohort (119,000+) of children in West Sussex. In the Nebraska study, children with intellectual disabilities were 3.8 times as likely to be abused as children without disabilities, and in the West Sussex study, children with intellectual disabilities were 4.7 times as likely to be abused as children without disabilities. Clearly the risk of abuse is greater, not less, for children with disabilities. This implies that they need more protection to achieve an acceptable standard of safety.
This need is exactly the reason that the United Nations Convention on the Rights of the Child, the most widely accepted and endorsed human rights treaty in the history of our planet, specifies that children with disabilities must have special protection to achieve equal human rights. Dr. Singer, of course, suggests that there should be no such thing as human rights. He explains that the notion of human rights is all based on a misunderstanding and speciest biases. He interprets Kant to say that being human is not adequate reason to be respected or afforded rights, rather rights should be afforded on the basis of the demonstration of rational thinking to clever apes and parrots, computers, fictional aliens with big brains, or any other entity that can pass a test of reasoning. Just as literacy tests were once used to determine who had voting rights, Singer suggests some new test of rationality to determine whose lives should be protected. If we accept Dr. Singer’s premises and arguments that there should be no universal human rights and no rights of all human children from birth to the age of majority, we must reject the Convention on the Rights of the Child and all other human rights documents that guarantee basic rights simply on the basis that an individual is a living human.
This leads to the second possible reason for arguing less protection for the lives of people with disabilities. Singer’s argument against protecting the lives of people with intellectual disabilities is based on the view that these lives are simply not worth protecting. In his view, these individuals are human non-persons with no moral status and no rights. As his presentation suggests, he considers convincing people that there should be no such thing as universal human rights to be an essential step toward greater recognition of animal rights. Children with profound intellectual disabilities would be the first casualties to this attack on human rights. Would others follow? I do not know and hope we never find out, but I do believe there is a danger that if we decide that we can exclude some others may follow.
I agree with Professor Singer that non-human animals should receive much better treatment and perhaps have recognized rights. I applaud the Spanish Parliament for recognizing Apes right to life and liberty and freedom from torture in 2008. I greatly appreciate the important conceptual work of Dr. Singer and others in helping to bring this about. I strongly disagree that an attack on Universal Human Rights by denying them to individuals with profound disabilities is necessary, sufficient, or in any way helpful in achieving better lives for animals. Pitting animal rights against human rights is divisive and counterproductive for bettering the lives of people with disabilities and for bettering the lives of nonhuman animals…. But that is an issue for another Whatsorts blog entry.
Transcript of the Peter Singer Video Clips:
Clip 1: Cognitive abilities and moral status
I do want to challenge you, the conference is subtitled, Cognitive disability: A challenge to moral philosophy, and I think it goes in both directions, actually. Moral philosophy is a challenge to how we think about people with cognitive disability and, to some extent, to how we think about questions of moral status. So a lot of the issues that I was thinking about in listening to previous sessions like the one we just had now… a lot of the issues, I think, people are thinking within a certain sphere… we’re thinking within a certain sphere, and I want to broaden the sphere so that we are not just looking at people with cognitive disabilities but we’re looking at how our thoughts about moral status altogether relate to beings who do not have the cognitive abilities that normal humans do have. That’s really what I want to talk about.
Clip 2: Parental Choice and Ashley X
“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 intubate 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.”