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, Singers 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 Singers remarks and
history, NCD took off the gloves.
In the interview, host Aaron Klein
referenced Singers 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
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
That wasnt 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
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 dont provide enough benefits given
the costs of those treatments. And if we didnt 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
its 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 dont 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 statements 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.