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NCD Rebukes Disparager of Disabled Life

By Mike Ervin

Philosopher and bioethicist Peter Singer has a knack for agitating disability activists like no one else can.

Singer is the Ira W. DeCamp Professor of Bioethics at Princeton University and author of many books. In his writings and statements, Singer has repeatedly devalued the lives of people with disabilities in the name of rationality and utilitarianism.

In an April 16 interview on the "Aaron Klein Investigative Radio" show that aired on New York's AM 970 and Philadelphia 990 AM, Singer’s comments provoked the National Council on Disability to issue an unusually candid and sarcastic rebuke. In its statement, the organization said that it “categorically rejects any calculus that assumes to ascribe a measurable, immutable quality of life to another human being -- disabled or not. There are simply too many variables to consider in making ‘quality of life’ assumptions. Such conjecture should be left in the classroom alongside brainteasers about moving trains and traveling at the speed of light.”

The NCD is an independent federal agency charged with advising the president, Congress and other federal agencies regarding policies, programs, practices and procedures that affect people with disabilities. Its usual method is to issue indepth, thoroughly researched reports that are academic in tone. But in response to Singer’s remarks and history, NCD took off the gloves.

In the interview, host Aaron Klein referenced Singer’s 1993 book “Practical Ethics.” In it, Singer speculated on the morality of killing infants born with significant disabilities, such as spina bifida, and contended that if the parents do not wish to raise such a child, it might be proper to put that child to death.

He wrote, “When the life of an infant will be so miserable as not to be worth living, from the internal perspective of the being who will lead that life, both the 'prior existence' and the 'total' version of utilitarianism entail that, if there are no 'extrinsic' reasons for keeping the infant alive -- like the feelings of the parents -- it is better that the child should be helped to die without further suffering.”

Regarding infants diagnosed with hemophilia, Singer wrote: “Suppose a woman planning to have two children has one normal child, and then gives birth to a haemophiliac child. The burden of caring for that child may make it impossible for her to cope with a third child; but if the disabled child were to die, she would have another. It is also plausible to suppose that the prospects of a happy life are better for a normal child than for a haemophiliac.

“When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total amount of happiness will be greater if the disabled infant is killed. The loss of happy life for the first infant is outweighed by the gain of a happier life for the second. Therefore, if killing the haemophiliac infant has no adverse effect on others, it would, according to the total view, be right to kill him.”

That wasn’t the only instance of Singer comparing the worth of disabled children to that of “normal” children. In his 1994 book “Rethinking Life and Death,” he wrote: "To have a child with Down syndrome is to have a very different experience from having a normal child. It can still be a warm and loving experience, but we must have lowered expectations of our child's ability. We cannot expect a child with Down syndrome to play the guitar, to develop an appreciation of science fiction, to learn a foreign language, to chat with us about the latest Woody Allen movie, or to be a respectable athlete, basketballer or tennis player."

The April radio interview also included a discussion about the morality of health-care rationing. At one point, Klein asked Singer: “Do you think in the future, in order to ensure a more fair rationing of health care and health-care costs, that it should actually be instituted more? The killing of severely disabled babies?”

NCD took Singer to task for responding: “You had a healthcare system in which governments were trying to say, ‘Look, there are some things that don’t provide enough benefits given the costs of those treatments. And if we didn’t do them we would be able to do a lot more good for other people who have better prospects,’ then yes, I think it would be reasonable for governments to say, ‘This treatment is not going to be provided on the national health service’ if it’s a country with a national health service. Or in the United States on Medicare or Medicaid.”

In its statement, the NCD wrote, “Without offering any concrete measure on how quality of life could or should be determined, Singer admitted, ‘I don’t want my health insurance premiums to be higher so that infants who can experience zero quality of life can have expensive treatments.’”

The NCD accused Singer of clinging to and perpetuating a primitive view of living with a disability.

“People with disabilities commonly report more satisfaction with their lives than others might expect,” the NCD wrote. “Though it might surprise Singer and those with limited imaginations, even people with disabilities who encounter obstacles, prejudice, and discrimination derive satisfaction and pleasure from their lives … While Singer has certainly proven himself as adept at getting press by spinning yarns that are decades, if not centuries, removed from the lived experience of disability, thankfully, polls, social scientists and disabled people themselves are telling a different story.”

Lawrence Carter-Long, NCD public affairs specialist, was charged with writing the statement.

“The real story began after the interview aired when bloggers, websites, even international news outlets, started picking the story up,” he said. “In the coverage, we saw Singer was being quoted often without question or even an opposing viewpoint. The disability community risked being left out of a high-profile discussion about our very lives if we neglected to respond. In the spirit of ‘nothing about us without us’ the council felt it was important – necessary, even -- to weigh in on issues that, quite literally, are matters of life and death for so many.”

Carter-Long said the council members unanimously approved the statement’s content and tone.

The statement pointed out how wrong medical professionals have historically been when judging the potential of people with disabilities.

“People with disabilities have also frequently seen firsthand that medicine, not unlike philosophy, is more of an art than a fixed, immutable status quo, particularly when it comes to the imperfections of medical prognosticating,” the statement said. “It is not uncommon for individuals with disabilities and parents of children with disabilities to receive fervently bleak, but inaccurate, predictions by members of the medical profession about options, opportunities or potential … Medical personnel are not always very knowledgeable of special education and rehabilitation techniques, specialized accommodations, independent living philosophy, and other factors that may spell the difference between a direly limited or satisfying and fulfilling future for an individual with a disability. And it seems, neither are some philosophers on media tours to sell their latest book.”

The statement concluded with one last swipe at what it called the “sound bite sensationalism” of Singer. “Hypothetical supposition should be expected in the classroom, but when presented as fact we would be wise to consider the real-life consequences of provocative discourse -- especially when those positions, after careful examination, are exposed as spurious speculation …In short, we offer this simple but indispensable advice: ‘Professor, do your homework.’”

Singer did not reply to a request to respond to NCD in this article.

Mike Ervin, who writes on disability topics, is a frequent contributor to Independence Today.

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