WASHINGTON, April 24, 2015 (GLOBE NEWSWIRE) --
The following is a statement on behalf of the National Council on Disability.
On Sunday April 16, contentious Princeton Professor Peter Singer, once again argued that it is "reasonable" for the government or private insurance companies to deny treatment to infants with disabilities. Singer's remarks were made on "Aaron Klein Investigative Radio," which is broadcast on New York's AM 970 and Philadelphia 990 AM.
In the interview, which was ironically conducted as part of a press tour Singer is currently on promoting his new book about charities, "The Most Good You Can Do: How Effective Altruism Is Changing Ideas About Living Ethically," the professor advocated the shocking claim that health care laws like the Affordable Care Act should be more overt about rationing and that we should acknowledge the necessity of "intentionally ending the lives of severely disabled infants."
During the controversial segment, talk show host Aaron Klein quoted from a chapter of Singer's "Practical Ethics," titled "Taking Life: Humans" published in 1993.
Singer, who is known for his provocative and often contradictory views on animal liberation and infanticide, also repeatedly referred to disabled infants as "it" during the interview. Without offering any scientific evidence to support what amounts to a return to eugenics, Singer routinely contends the "right to life" is related to a being's capacity for intelligence and having preferences, which in turn is directly related to an undefined capacity to feel and/or comprehend ethereal concepts like pain and pleasure.
Singer told Klein that health care rationing is already happening, and surmised that hospitals routinely make decisions not based on need, but rather on cost. He then used the presumed practice to rationalize the killing of disabled infants by arguing in support of "non-voluntary euthanasia" for human beings who Singer contends are not capable of understanding the choice between life and death, including "severely disabled infants, and people who through accident, illness, or old age have permanently lost the capacity to understand the issue involved."
When asked whether denying treatment to disabled infants has become more common in the United States under the Affordable Care Act, Singer speculated: "It does happen. Not necessarily because of costs" and continued: "If an infant is born with a massive hemorrhage in the brain that means it will be so severely disabled that if the infant lives it will never even be able to recognize its mother, it won't be able to interact with any other human being, it will just lie there in the bed and you could feed it but that's all that will happen, doctors will turn off the respirator that is keeping that infant alive."
"I don't know whether they are influenced by reducing costs," Singer said before using what critics claim is inflammatory and speculative language to defend the practice. "Probably they are just influenced by the fact that this will be a terrible burden for the parents to look after, and there will be no quality of life for the child... We are already taking steps that quite knowingly and intentionally are ending the lives of severely disabled infants. And I think we ought to be more open in recognizing that this happens."
Klein followed up by asking whether the killing of severely disabled infants should be encouraged to reduce health-care costs. "Do you think in the future in order to ensure a more fair rationing of health-care and health-care costs," asked Klein, "that it should actually be instituted more? The killing of severely disabled babies?"
Singer responded, by stating if "you had a health-care 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."
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."
As NCD wrote in 1997, "Under the federal Rehabilitation Act and the Americans with Disabilities Act, the United States, through the Department of Justice, is responsible for enforcement of requirements that people with disabilities not be discriminated against by federal, state, and private hospitals and other health care providers."
On numerous occasions, NCD has discussed and documented the existence of widespread and virulent discrimination on the basis of disability. The existence of such discrimination and the deleterious effect that it has upon citizens with disabilities and our nation were primary reasons that in 1986 the Council proposed what became the Americans with Disabilities Act (ADA).
When the ADA was enacted over two decades ago, Congress recognized "historically, society has tended to isolate and segregate individuals with disabilities, and despite some improvements, such forms of discrimination continue to be a serious and pervasive social problem." [1] NCD continues to receive calls, reports and messages about pervasive prejudice and discrimination daily. Unlike Singer's provocative guesswork, ivory tower speculation this is not.
Further, Congress acknowledged the real-world reality that individuals with disabilities "have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society. [2] The deep-seated nature of discrimination on the basis of disability has been widely acknowledged and documented by numerous other authorities. [3] Discrimination because of disability is not likely to be reduced by Singer's positions, or the logical policy positions that would emerge from them. Discrimination is not solely a philosophical concept it remains a regular occurrence for individuals with disabilities.
One of the hallmarks of societal attitudes toward disabilities has been a tendency of people without disabilities, including media savvy philosophers, to overestimate the negative aspects and underestimate the positive features of the lives of those who have disabilities. The attitude of "I don't see how you can live with that" -- sometimes expressed more dramatically as "I'd rather be dead than have [X disability]" -- is one that people still shockingly profess openly in encounters with people with disabilities.
The U.S. Commission on Civil Rights has described the "extremely extensive" negative connotations of disability: "To the fact that a [person with a disability] differs from the norm physically or mentally, people often add a value judgment that such a difference is a big and very negative one." [4] Even without evidence to support this supposition, philosophers like Singer are not immune from this bias. In fact, their views seem to emerge from it when divorced from the reality of the lives that disabled people actually live.
In contrast to Singer's ivory tower speculations, the United States Supreme Court has acknowledged that "society's accumulated myths and fears about disability are as handicapping as are the physical limitations that flow from actual impairment." [5] Regulations and courts addressing job discrimination based on disability under the ADA and other laws have expressly identified the discrimination that results from misperceptions and unrealistically low expectations of what people with disabilities are able to do. [6]
One legal commentator has written that "[t]he image of a [person with a disability] as one who is not able to do many things, who is unable to fill a proper role in society, and who is not a success in terms of achievements or happiness is widespread and deep-seated." [7]
Increasingly, negative predictions of quality of life have little to do with the actual life experiences of people with disabilities. People with disabilities commonly report more satisfaction with their lives than others might expect. 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.
For example, a nationwide poll of people with disabilities, conducted by Louis Harris and Associates reported that "[d]espite their disadvantaged status and frequent exclusion from activities enjoyed by most Americans, a large majority of disabled Americans are satisfied with their lives"; the Harris organization described this as "a remarkable finding in light of the portrait of hardships revealed in these survey findings." [8] Even individuals who identified themselves as having very severe disabilities tended to report that they were very or somewhat satisfied with their lives. [9] 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.
The realities of quality of the lives of Americans with disabilities is obscured by the misguided projections and low expectations of others, for as one disability authority has observed, "when society opts to judge the quality of life for an individual with a disability, it does so from the perspective of a fear of disability and historical prejudice and discrimination." [10]
Recognizing this fact, NCD 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.
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. 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 professional about options, opportunities or potential.
Evan Kemp, former chairman of the Equal Employment Opportunity Commission, who was diagnosed with a progressive neuromuscular disease at age 12, once wrote: "Upon diagnosis, my parents were informed by the physicians treating me that I would die within two years. Later, another group of physicians was certain that I would live only to the age of 18. Yet here I am at age 59, continuing to have an extraordinarily high quality of life. The majority of families I have encountered in my lifetime, and who have been close enough to share details of their extended family life, have had at least one member who defied the medical establishment by living a far longer and more productive life than expected." [11]
One noteworthy example of erroneous medical fortunetelling was a widely publicized court case [12] in which permission was sought to discontinue a ventilator for a comatose young woman named Karen Quinlan. There was no dispute among the medical experts consulted that without the assistance of the ventilator Ms. Quinlan would die in a matter of days or weeks, if not hours. After New Jersey courts approved discontinuance of the ventilator, it was removed, but Quinlan lived, breathing on her own, for almost ten years.
However one feels about the court's decision in the Quinlan case, it is clear that the medical forecasting was substantially erroneous even in this highly visible, arguably carefully considered, fully-litigated situation.
This is not to suggest that most or even a substantial portion of medical projecting is erroneous, but rather that people with disabilities are aware of enough instances of dramatic mistakes that many have a healthy and appropriate degree of skepticism when it comes to medical predictions, particularly as it relates to assumptions about one's quality of life.
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.
NCD suggests that this should be taken into account when considering the validity of their views, as should the practical and understandably disturbing policy implications of sound bite sensationalism. 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."
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[1] 42 U.S.C. §12101(a)(2).
[2] Id. §12101(a)(7).
[3] See, e.g., Accommodating the Spectrum of Individual Abilities 17-42, 159; Alexander v. Choate, 469 U.S. 287, 295-96, 286 (quoting 117 Cong. Rec. 45,974 (1971) (statement of Rep. Vanik); 118 Cong. Rec. 526 (1972) (statement of Sen. Percy)) (1985); S. Rep. No. 116, 101st Cong., 1st Sess. 9 (1989); H.R. Rep. No. 485, 101st Cong., 2d Sess. pt. 2, at 32 (1990) (Education and Labor Committee) [hereinafter Education & Labor Committee Report]; Task Force on the Rights & Empowerment of Americans with Disabilities, Equality for 43 Million Americans with Disabilities: A Moral and Economic Imperative 8 (1990), quoted in Education & Labor Committee Report, at 31-32; Louis Harris & Assocs., The ICD Survey of Disabled Americans: Bringing Disabled Americans into the Mainstream 70, 75 (1986); Louis Harris & Assocs., The ICD Survey II: Employing Disabled Americans 12 (1987); City of Cleburne v. Cleburne Living Center, 473 U.S. 432, 454 (Stevens, J., joined by Burger, C.J., concurring) (1985); id. at 461, 462 (Marshall, J., joined by Brennan & Blackmun, JJ., concurring in part and dissenting in part).
[4] U.S. Commn on Civil Rights, Accommodating the Spectrum of Individual Abilities 26 (1983)
[5] School Board of Nassau County v. Arline, 480 U.S. 273, 284-85 (1987).
[6] 29 C.F.R. 406 (app. to pt. 1630) (commentary on §1630.2(l)) (1993) (can prove discrimination "by demonstrating that the exclusion was caused by one of the `common attitudinal barriers' toward individuals with disabilities such as an employer's concern about productivity, safety, insurance, liability, attendance, cost of accommodation and accessibility, workers compensation costs, and acceptance by coworkers and customers"); Wooten v. Farmland Foods, 58 F.3d 382, 385 (8th Cir. 1995) (the "regarded as" prong of the definition of disability encompasses "archaic attitudes, erroneous perceptions, and myths"). Several ADA decisions have recognized employers' "myths, fears and stereotypes associated with disabilities." See, e.g., Freund v. Lockheed Missiles and Space Co., 930 F.Supp. 613, 618 (S.D.Ga. 1996); EEOC v. Texas Bus Lines, 923 F.Supp. 965, 975 (S.D.Tex. 1996); Howard v. Navistar Internat'l Transp. Corp., 904 F.Supp. 922, 929-30 (E.D.Wis. 1995); Pritchard v. Southern Company Services, 1995 WL 338662, 4 AD Cases 465, 473 (N.D.Ala. 1995); Lussier v. Runyon, 1994 WL 129776, 3 AD Cases 223, 231 (D.Me. 1994); Scharff v. Frank, 791 F.Supp. 182, 187 (S.D.Oh. 1991) ("stereotypical treatment").
[7] Robert L. Burgdorf Jr., The Legal Rights of Handicapped Persons: Cases, Materials, and Text 8 (1980).
[8] Louis Harris & Assocs., The ICD Survey of Disabled Americans: Bringing Disabled Americans into the Mainstream 55 (1986).
[9] Id. at 46, Table 19.
[10] Paul Steven Miller, The Impact of Assisted Suicide on Persons with Disabilities -- Is It A Right Without Freedom?, Issues in Law & Medicine 9:47, 54 (1993).
[11] Evan J. Kemp Jr., "Could You Please Die Now?: Disabled People Like Me Have Good Reason to Fear the Push for Assisted Suicide," The Washington Post C1 (Jan. 5, 1997).
[12] In re Quinlan, 355 A.2d 647 (N.J. 1976).