[This post is the fifth 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.]
In a previous post, I questioned that Peter Singer’s position that moral status should be based on the demonstration of higher cognitive powers and not based on merely being human. In this post, I want to address his statement that the decision to keep children with profound mental retardation alive is acceptable as a parental choice but not an ethical obligation because such children have no moral status, since they lack the requisite higher cognitive powers. In making my case against this position, I intend to show that Singer’s arguments are based on a misunderstanding or misrepresentation of profound mental retardation or profound intellectual disability as it is more commonly called today. I doubt that Professor Singer has much personal experience with people with profound intellectual disabilities since his impression of them as a group seems very abstract and largely inaccurate. Although I would argue against the denial of moral status (and thereby of universal human rights) to people with profound intellectual disabilities, even if Singer’s assumptions about this group of people were true, I feel that it is important to correct the inaccurate assumptions presented about this group. Here is what Dr. Singer has to say about them:
Before addressing these issues, however, I want to discuss some basic concepts about the moral status, moral obligations, universal human rights, and personal rights. In providing these rather simplistic explanations of terms, I will admit to and apologize for my rather limited knowledge of philosophy. So some of the difference’s between Dr. Singer’s position and my own may be due to his ignorance regarding people with profound intellectual disabilities and my own ignorance regarding the discipline of philosophy. Human rights, however, are everybody’s business, and concepts like humanhood and personhood, which are the fundamental foundations of human rights, should not be left to the sole discretion of a small group of professional philosophers.
Moral status is a concept that indicates a living individual or thing is worthy of ethical consideration. For example, most people would agree that a twig that has fallen off a tree has no moral status and that a typical human being does have moral status. Therefore breaking a twig into pieces (even in the absence of some powerful reason for doing so) is not morally wrong, while breaking another person into pieces is morally wrong (at least, unless some higher rationale can justify this action). Moral obligations are responsibilities that other individuals or collectives have to each individual with moral status. Fundamental rights are basic moral obligations that are widely recognized and generally enforceable by law. Typically these might be called universal human rights or universal personal rights. As these terms imply, human rights suggests that these rights apply to every living human, and personal rights suggests that these rights apply to every person. In practice, personal rights often go beyond basic human rights and not everyone who has basic human rights may be recognized as having full personal rights or citizenship. For example, children are recognized as having human rights to survival and freedom from cruelty, but they are not typically given the right to full liberty, to vote, or to hold office. In much of the world, women were recognized as human but not as persons with full and equal rights until well into the 20th Century, although they were typically recognized as having basic human rights (even if these rights were violated).
Professor Singer does not distinguish between human and personal rights in this way. Instead, he uses the concept of personhood as the foundation for moral status and suggests that being human has nothing to do with it. This appears to solve two problems. It allows him to suggest that some nonhuman persons should be recognized as having equal moral status to human persons. It also allows him to suggest that some humans, whom he refers to as profoundly retarded, should not have moral status and should be considered nonpersons. Singer is not the first ethicist to argue that the lives of people with profound intellectual disabilities should not be protected. Joseph Fletcher, often known as the Father of Bioethics, for example, in the early 1970s argued that individuals with IQs below 20 were not human and therefore did not have moral status while those with IQs between 20 and 40 were doubtfully human. Singer, however, recognizes that humanhood is a biological fact, while personhood is not.
Dr. Singer invokes Kant and tells us that surely Kant in extolling the unique moral status of humans did not mean to imply all humans, but only those persons that he considered to have higher cognitive powers. Kant, however, contradicts himself. He does appear to say that every human being has unique rights as a person. He also says that women must be subservient to men and excludes them from active citizenship. Certainly, Professor Singer is correct that Kant did not mean all humans. Some philosophers excuse Kant’s exclusion of women from free and equal status as simply being blinded by the customs of his time. He simply saw the way that women were treated and assumed that because it was common practice, even among the most intelligent and moral men of his day, that it was therefore morally correct. But this is the same argument that Peter Singer uses to justify the killing of infants with severe disabilities. It is a common practice. He can take his students to a modern hospital and show them that infants with disabilities are being made to die everyday. Parents and doctors are make these decisions, therefore there can be nothing morally problematic about it. Applying this same logic, Singer could take his students to a slaughterhouse and explain because we allow nonhuman animals to be killed and often raised under very unpleasant conditions to be killed, it also must be morally correct.
Professor Singer makes the argument that parents, health care professionals, and other members of society, who exercise control over the lives of children with disabilities, treat them as having no right to survive, these children are by implication nonpersons. He points out most potential parents of children with Down syndrome or other prenatally diagnosed syndromes that are associated with intellectual disabilities choose abortion. He draws attention to the frequent and partially public practice of bringing about he deaths of infants with severe disabilities by withholding life-sustaining treatment.
He suggests that because in the Ashley X case parents and doctors were allowed to use medicine and surgery to limit the growth and sexual development of a child with multiple severe disabilities, that such procedures are generally accepted by society. He implies that if children with disabilities mad moral status or independent rights, such a procedure would be unethical or illegal. He suggests that because these procedures were legally and ethically acceptable they provide evidence that such children have no moral status. In using this example, to demonstrate that such practices are freely permitted, however, he fails to mention that the Seattle Children’s Hospital was investigated, was found to have acted illegally and to have violated the rights of the child, acknowledged that it had appropriately, and agreed to reform its ethical review process. In part, this included (pdf file of report):
Children’s will take corrective actions to assure that in any future case involving the sterilization of an individual with a developmentally disability, a valid court order not subject to appeal is in place. These corrective actions will include design and implementation of appropriate forcing functions within computer systems to prevent scheduling any such procedure unless the requirements of Children’s policies have been met. Children’s will also undertake educational activities to inform members of its medical staff and employees about a) the legal requirements in the state of Washington for court review and order before sterilization of a developmentally disabled individual; b) Children’s policy prohibiting growth-limiting medical interventions for individuals with developmental disabilities without court order; and c) bioethical considerations in limiting the physical growth of individuals with developmental disabilities.
Children’s believes it will benefit from adding to its Ethics Committee one or more individuals who can advocate for individuals with developmental disabilities. Within 60 days of receiving from WPAS its recommendation of one or more individuals to serve in this capacity, Children’s will appoint an individual as a member of the Ethics Committee who can serve as this advocate.
As set forth above, the rights of six-year old Ashley were violated in the initial use of the “Ashley Treatment.”
In short, the both the independent investigators and the hospital acknowledged that there was “systemic failure” that resulted in its violation of the civil rights of the child. Therefore, this case serves to demonstrate that society does recognize that children with disabilities have rights and therefore are recognized as having moral status. Using the case as an example of the exact opposite by omitting the resolution is misleading. Perhaps Dr. Singer was actually unaware of the outcome of this case, and did not intend to deliberately misrepresent it.
Dr. Singer allows that if some parents and caregivers choose to care for rather than kill their child with a disability they are free do so, but that there is no ethical or social imperative for requiring a higher standard of care by. In discussing the idea that parents of children with disabilities ranging form Down syndrome to severe disabilities think their children should be kept alive, Dr. Singer suggests “that’s fine for parents who have this view and make that choice obviously, but there is also the contrary view…” and he goes on to say that “parental choice ought to have an important role in decisions, at least in decisions for those with profound mental retardation, maybe for others as well.” This last statement has a strong similarity to Fletcher’s idea that people with IQs below 20 can be killed because they are not human, and it may be okay to kill people with IQs below 40 because they may not be human, but avoids the human issue by using other terms.
Singer’s reliance on the fact that many parents do not choose to complete pregnancies if they expect their children to be born with disabilities and that many will choose to let their children with disabilities die to support the notion that therefore such children have no moral status provides a weak and somewhat surprising foundation for his thesis. In fact, given the opportunity many parents choose to abort pregnancies solely because they expect girls, and in some cases female infants are allowed to die or actively killed. Applying Singer’s logic, we might also say of parents who choose to have girls, “that’s fine for parents who have this view and make that choice obviously, but there is also the contrary view…”
Dr. Singer correctly points out a discrepancy between the practices of caregivers and fundamental tenants of human rights. Section 6 of United Nations Convention on the Rights of the Child, for example, identifies the most fundamental “universal human rights of children” as survival and development. Nevertheless, Dr. Singer points out that children with severe disabilities are frequently not allowed to survive (U.S. and Canadian studies find about ¾ of all deaths in pediatric or neonatal intensive care units occur as a result to withhold or withdraw treatment and about 25% of these deaths occur in children that are fully viable but a decision is made that their lives would be better ended). In addition, at least in the Ashley X case, sexual and physical development of a child with severe disabilities was intentionally halted.
There are two possible explanations for these apparent discrepancies. Either these practices are a massive violation of the human rights of children with severe disabilities, or as Dr. Singer suggests, these practices demonstrate that children with severe disabilities are exceptions and not covered by so-called “universal” rights. Dr. Singer chooses the second explanation, while I choose the first. Without going into too much detail about all of the reasons why I believe rights violation is a better explanation, I will point out that the framers of the 1989 Convention on the Rights of the Child clearly intended children with severe disabilities to be fully protected. Article 2 explicitly prohibits “discrimination of any kind” including differential treatment on the basis of “disability,” and Article 23 requires “a mentally or physically disabled child should enjoy a full and decent life.” Rather than mandating a lower level of protection for children with disabilities, the Convention recognizes that the rights of children with disabilities have been widely violated and calls for special protection of their rights. This convention is the most widely endorsed human rights treaty in human history, having been ratified by every member of the United Nations except Somalia and the United States. There is no logical way to accept Singer’s arguments without rejecting this treaty, and most other foundations of universal human rights such as the Universal Declaration of Human Rights (1948), which states “Everyone is entitled to all the rights and freedoms set forth in this Declaration, without distinction of any kind” and, more specifically, Declaration on the Rights of Mentally Retarded Persons (1971) which states:
1. The mentally retarded person has, to the maximum degree of feasibility, the same rights as other human beings.
2. The mentally retarded person has a right to proper medical care and physical therapy and to such education, training, rehabilitation and guidance as will enable him to develop his ability and maximum potential.
Accepting Dr. Singer’s position clearly requires erasing the last 60 years of progress in the recognition of Universal Human Rights. In fact, applying Singer’s principles would require the elimination of Human Rights and replacing them with some other form of rights based on cognitive capacities.
In addition, Dr. Singer’s use of the term “profound metal retardation” as the basis for describing a category of humans to which moral status and human rights should be denied demonstrates no real understanding of what profound mental retardation actually is or means. Rather it is a loosely applied stereotype.
Here are some facts, profound intellectual disabilities refer to impairments in adaptive behaviour and an IQ test score more than 5 or more standard deviations below average. Depending on the test and some other definitional intricacies this means a maximum IQ score somewhere between 19 and 25. It is a very rare condition. For example, a recent population-based study only 0.06% about 6 in 10,000 people had profound intellectual disabilities (Arviio & Sillampiaa, 2003) while others suggest the number is closer to 2-3 per 10,000. One of the reasons that the figures vary so much is that the reliability of IQ tests is limited especially at the extreme ranges. Dr. Singer acknowledges that this is a very small group of individuals but suggests that the numbers don’t matter because he is only using them to make a philosophical argument. The philosophical argument that he is making, however, is one that undermines the basic protection of the lives and rights of all individuals in this group. As a society, we have developed elaborate safeguards to protect such rights as life and liberty, and no individual should be deprived of fundamental rights with out clear and convincing evidence beyond a reasonable doubt. Vague generalities about entire classes of people are not adequate. In reality most people with IQs below 25 do not fit the description that Dr. Singer presents. Of course, if Dr. Singer is right, if these people have no moral status and therefore have no rights, the imprecise characterization and and sloppy science is of no consequence. Simply put, the lives of these individuals are of no consequence to him, and so the inaccuracies with which he argues against protecting them is consequently equally unimportant.
Singer suggests that people with profound intellectual disabilities are capable of very little. In fact, there is a great range of skills and behaviour demonstrated by people with profound intellectual disabilities. It is true that a small percentage of people diagnosed with profound mental retardation will show very limited self-awareness or social behaviour, but many more individuals in this group exhibit much more advanced skills. An individual with an IQ between 15 and 25 for example, might be expected to walk, run, and climb stairs; copy simple shapes; stack blocks; understand most adult language; use symbols; have a spoken or signed vocabulary of several hundred (sometimes more than 1000) words; speak or sign sentences of three to five words; make choices; Ask questions and request information; request help from others when needed; demonstrate understanding of past, present, and future; self-feed; self-dress with minimal assistance; do useful chores or simple work; demonstrate a sense of humor, and count a few objects.
As an example, Robert, a man with whom I worked got in trouble for fighting with a coworker, and I asked him what happened. He said that the coworker had offered to sell him a cigarette lighter for $1. He said he gave the coworker a $5 bill and asked for change but the coworker refused and claimed that he had only given him a $1 bill. Looking at Robert’s record, there were three separate IQ scores from independent psychologists. Two indicated his IQ to be 16 and the third indicated that it was 22. Robert was diagnosed as “profoundly mentally retarded.” Of course, Dr. Singer might very well argue that not every individual who has a profound intellectual disability can do everything that Robert could do, yet Dr. Singer seems prepared to accept all Gorillas a s persons based on this description of what one gorilla, Koko, can do. Many individuals with profound intellectual disabilities have much larger receptive and and productive vocabularies than Koko, the Gorilla. This does not mean that Koko’s achievements are unimpressive, it does mean that if we set the cognitive ability standard to exclude human beings with IQs of less than 25, as Dr. Singer suggests, that criterion would also exclude the vast majority of animals that Dr. Singer would like to protect.
While there is a great range of abilities among people with profound intellectual disabilities, the vast majority clearly demonstrate sentience, self-awareness, and some degree of social behaviour, the very qualities that Dr. Singer suggests are perquisites for personhood.
There is another practical reason that I find Singer’s view that having a child with a disability is a personal choice of parents and not based on any moral status of the child. Society recognizes the raising of children as a joint responsibility between families and society as a whole. While families invest a great deal to time and resources in having a child, society also makes substantial contributions through tax deductions, daycare subsidies, public education, social programs, and publicly funded health care. Society’s contribution to its members is based on the moral status of these members of society. Denying the moral status of some children removes society’s responsibility and shifts the responsibility for their care entirely onto families. Of course, if we were truly to believe that these children have no moral status, this would be reasonable. If a family were to choose to raise a twig or a stone as their child, society would have no obligation to provide daycare, school, or healthcare for their twig or stone to support this family’s choice. If, however, a family chooses to raise a real child with legitimate moral status, society does have an obligation to support this choice. Raising a child with a profound intellectual disability is a major commitment for families, and it also places some demands on society. Under current international law and the law in most countries, children with disabilities have a right to this help. Applying Dr. Singer’s principle and exempting them from our moral obligations removes this right.
Of course, I must admit to having a personal interest in this issue, because we have raised a child, now a young man, with profound and multiple disabilities for the last 18 years. There is no doubt that my personal connection to our own son, increases the passion with which I address this issue, but I would also point out that my position on this issue has not changed since the late 1970s, when I first began to consider it, is well documented in my published writings years before our family was personally affected by this issue (see for example, Orelove and Sobsey, 1987, Educating Children with Multiple Disabilities) and has remained virtually unchanged since that time (e (see for example, Sobsey, 2007, “Children with Disabilities” in A question of commitment: The Rights of the Child in Canada).
Some parents and some governments may not want to make the commitment necessary to meet the obligations implied by recognizing the rights of people with disabilities, but there is no doubt that these rights currently exist, even if they are frequently violated or ignored. Accepting Dr. Singer’s position that such children have no moral status leads inevitably to taking those rights away.
Now, let’s look at some human beings with cognitive disabilities. Dr. Harris just gave you before a breakdown of the percentages of people with cognitive disabilities that fall into the various ranges, and I’m focusing here on the very bottom of the range–those with profound mental retardation–and I acknowledge that this is a very small percentage. In fact, the American Association for Intellectual and Developmental Disabilities says it’s 1%, I think Dr. Harris said 1.5% percent. It doesn’t matter very much. The point is that there are human beings with these capacities and I’m going to go on to raise arguments about claims of a certain kind of moral status for all human beings. So, from the point of view of making a philosophical argument, it’s not very important whether it’s 1% or 1.5% or 5 or 10% that we’re talking about. What is important is that there are some if were addressing universal claims. I recognize that for some of you in the audience here, this may make what I’m saying less interesting, because the majority of you are here because the majority of you are here because you have a concern with people with cognitive disabilities, those who are working with people with cognitive disabilities, or those who are the care or the relatives of people with cognitive disabilities will say, “well, that’s not like the people I work with or care for”. That’s true. And obviously the questions get more complicated once we move to issues about mild disability and so on. But, let me say, these are the people that I’m focusing on when I’m talking about those with cognitive disabilities. For the moment, I have in mind those with profound mental retardation as defined here and later we will have time for discussion. I do want to leave plenty of time for discussion. I thought it was a pity that in previous sessions that didn’t exist and I’m sure that people will have questions and will want to challenge me. So we can move, if you like, to the more nuanced questions about people not in this category in question time.
So, people with profound mental retardation have, as Dr. Harris said, IQs in the range below 25. Below 25 will always require much supervision, ability to understand exceeds ability to speak, may have little or no speech, may be capable of following simple directions, no academic skills, may be unable to perform any useful work, may appear socially isolated and pay little attention to others.