Biology 103
2000 Second Web Report
On Serendip

Who Should and Who Should Not Inhabit the World?

Jabeen Obaray

My initial interest in this topic came about as a result of an English class which I am currently taking on the subject of disabilities. The issue of abortion itself is not an easy question with a black and white answer, however, in terms of disabilities, there is a particular need for addressing this potentially dangerous issue. Scientific prenatal testing of disabilities (i.e. Spina Bifida, Down's Syndrome) has become an important issue with the increase in medical technology. However, if we were to develop a test which allowed for the detection of skin color prenatally, which would allow for racially mixed parents to have light skinned children, wouldn't most people would be outraged? And if the explanation for such a test were that it is difficult to grow up African-American, and we wanted to spare such "suffering", wouldn't people retaliate saying it was using scientific means to propagate racial prejudice? Yet, we perform tests which enable us to take steps toward the prevention of allowing a disabled life into the world, in the belief of reducing "human suffering", and with the idea that health and physical prowess are a source of human worth. The rise of eugenics (Greek for "well born") in American and Great Britain, has been linked to the racial hygiene movement in Germany. Hitler's ideas were, in fact, taken from the eugenics movement in the U.S. The extermination policies which came about in Nazi Germany began with a large - scale elimination of individuals with disabilities. The eugenic ideology underlies what has happened in the past, and the techniques that are currently being developed, but now instead of being forced, individuals are being given the tools. Do we have the right to determine who should and should not inhabit the world?

The concept of aborting individuals with potential disabilities was preceded by ideas on the extermination of already existing individuals with disabilities. Peter Singer, a contributor the field of "bio-ethics" maintains that there is no justification for regarding infants as having any more rights animals and that the parents of babies with certain disabilities be given the right to order the death of the infant. (1) In 1942, the American Journal of Psychiatry published a debate on the "Ethics of Killing Children with Severe Disabilities", in which one individual stated:

"I believe when the defective child shall have reached the age of five years - and on the application of his guardians - that the case should be considered under law by a competent medical board; then it should be reviewed twice more at four-month intervals; then, if the board, acting, I repeat, on the applications of the guardian of the child, and after three examinations of a defective who has reached the age of five or more, should decide that that defective has no future or hope of one; then I believe it is a merciful and kindly thing to relieve that defective - often tortured and convulsed, grotesque and absurd, useless and foolish, and entirely undesirable - of the agony of living." (1)

Here, we clearly see the idea that the non-disabled are "merciful", and are doing the disabled a justice in reducing their suffering.

Prenatal testing, is in essence deciding who should and should not inhabit the world. A woman diagnosed with a child with a potential disability (though the severity of the disability is unable to be determined), is not "forced" to terminate the pregnancy, but the "choice" she is given is between not terminating the pregnancy (for which she becomes "responsible" for the consequences which her child and family will take on, as well as being the "cause" of the physical and social pain of the child), or terminating the pregnancy due to chance of disability. A woman has the right to terminate a pregnancy, but must also feel empowered not to terminate it, confident that the society will do what it can to enable her and her child to live fulfilling lives. We must not, once again, allow scientists and physicians to determine whose lives are not worth living, and then for us to live in this world as is constructed by these individuals. This has already happened in China, where since July 1996 pre-natal testing has been made compulsory as has the abortion of any "abnormal" fetus. (10) Often times, a disabled individual will express that the "real" challenge in being disabled lies far more in terms of the discrimination which is a resultant of it, rather than the actual physicality of the disability. ) Doesn't the answer then arise in changing the societal implications of being disabled?

"It is not the impairments that disable us, but society" (10)

"As disabled people we know that our lives have a value equal to anyone's. We know that although our impairments may cause us pain or discomfort, what really disables us as members of society is a socio-cultural system which does not recognize our right to genuinely equal treatment." (10)

In an issue of Pediatrics, there was an article entitled "Early Management and Decision Making for the Treatment of Myelomeningocele". This article discussed a medical team at Oklahoma children's Memorial Hospital, whom had used a "quality of life" formula to decide whether to give parents of infants with Spina Bifida an "optimistic" or "pessimistic" diagnosis. The parents whom were given an "optimistic" prognosis were informed of all available treatments and those given a pessimistic prognosis were advised to forego intervention and treatment because the child "would be too disabled to ever enjoy life even if they survived". (1) In this case, it is clear that the physician is taking the position of deciding quality of life. Is this, however, really the job of the physician? Shouldn't they simply be stating the facts and providing options without bias?

Proponents of eugenics feel that it is a cause toward bettering humanity, and reducing human suffering. "There's always a multitude of worthwhile causes, but I can't imagine any more important than eugenics, because the health, intelligence, and character of the population are essential to the recognition and solution of all problems." (2)There is also the idea that those who are disabled lead a life of lower worth, and a life comprised solely of their disability.

"Far and away the best thing we can do for the children of the future is to bequeath to them the gifts of excellent health, high intelligence, and good character so that they will have the maximum innate capacity to meet whatever challenges might arise. Ask yourself this question: Would you rather be a healthy, smart, honorable person with a number of problems, or chronically ill, retarded, or a psychopath with no other problems?...Biological integrity is the number one priority for individuals, and for our species." (2)

However, one of the important things to recognize is that over 80% of disabled people are not born with their impairment but acquire it. Of those who have an impairment at birth, many of these are not genetically determined. Therefore, even if the promised threat of a final genetic solution was delivered, disabled people would still be around. (10)

There is also the belief that the disabled lead horrible existences, and we would be putting such individuals out of their misery if we were to implement eugenics, and that anyone who is opposed to eugenics, it is due to a lack of "appropriate" knowledge on the matter.

"Most anti- eugenicists aren't very formidable opponents, as they tend to be overly-emotional and terribly ill-informed." (2)

"It is quite reasonable to imagine that, had Hitler never been born, the Eugenics Movement of the early 1900's would have continued to flourish, and there would be eugenics programs in place in most advanced countries today. Policies would evolve to make use of new knowledge of genetics as it was acquired, and people would take eugenics for granted as merely "common sense", and "basic human kindness". But unfortunately, the vagaries of history and limitations of the human mind have conspired to construct a psychological trap which ahs thus far prevented any serious discussion of eugenics since the end of World War II. The "trap" is the universally accepted belief that "Hitler supported eugenics, so eugenics must be evil"....Like Pavlov's dogs, we in the Western world are the objects of conditioning. " (2)

As an example, let us look at a specific disability/incident. About 95 percent of fetuses diagnosed prenatally with Down syndrome are aborted. (8)One article documenting a parent's experience when they found out their child would had Down's Syndrome is documented in an issue of GeneLetter. They discuss how difficult it was hear that their child would not be "normal", and how they had to grieve the loss of the idea of having a "normal" child. However, it is obvious they do not regret their decision to not terminate the pregnancy.

""When I look at Julian - I've heard people say, 'Why bring a child into this world that has to have a hard, painful life?'...Most of these medical problems are temporary and fixable -- the minor ones are more like nuisances. And the mental retardation - that does not have to hinder his happiness and his ability to live a full life"....Day-to-day life indeed has been more difficult than she expected - the worry and work and physical care. "However, as far as how I feel about him, it's easier," she says. "There was a time that I worried whether I would love him as much as our other kids. But definitely. Definitely." " (8)

No one is claiming that raising a child with disabilities does not have its incredible difficulties, both for the child and the family, however, does this gives us the basis for denying these individuals the "right" to enter into the world? (7)

Proponents of the "new genetics" feel that genetics is in no way eugenic. For example, one individual writes:

"While the biological factors in most forms of inequality are probably slight, genetic technology does promise to create a more equal society in a very basic way: by eliminating congenital sources of illness and disability that create the most intractable forms of inequality in society. We can go to great lengths to give the ill and disabled full access to society, but their disabilities place basic limits on how equal their social participation and power can be." Isn't it desirable, he asks, to rid humanity of disease and impairments? Do we want our children born with muscular dystrophy or cystic fibrosis? If these and other conditions can be prevented with the help of clinical genetic intervention what could possibly be the problem?" (10)

The major problem caused by the new genetics is that despite the popular conception that genetic treatment is providing cures, there are virtually no new therapies for the vast majority of genetically - identified conditions. Because of this, at the moment, prenatal genetic testing or screening leads not to the elimination of an impairment but can and often does lead (through abortion) to the elimination of a fetus. (10)

"One key reason for this is that society continues to see disability as essentially a medical problem. This is where the new genetics enters stage Right or stage Left, brashly proclaiming its promise of a medical solution for disability." (10)

The issue of selective abortion raises many issues, such as what about those disabilities which can not be detected prenatally (along with the disabilities which are acquired, as well as those disabilities which can not be detected [i.e. Autism]), what then happens to these such people? Do they not then become even more stigmatized? And what of the numerous amounts of work which has come from these individuals, in Art, Literature, Music, Science, etc., do we not then eliminate those who have contributed greatly to our society? (6) And as in the case of Nazi Germany, where the eugenics movement began with the elimination as well as sterilization of the disabled and then eventually led to a full-fledged Holocaust, how do we know where to stop? The aborting of a disabled fetus does not provide an answer or a cure for the disability. So isn't this just a temporary band-aid, and a bad one at that? And because there is no "specific" gene that leads to any specific disorder, we can not "produce" individuals without these disabilities, because what else would we be taking away in the process? And is all this really worth a homogenous society lacking in genetic diversity?

WWW Sources

1) The Eugenics Movement in the U.S.

2) A Call to Action

3) Eugenics

4) Disability Studies

5) Disability Law

6) Disability Arts And Advocacy

7) Down Syndrome Let the People Speak!

8) Geneletter: Prenatal Genetic Testing: Considering All Options

9) Pro-Choice Forum

10) British Council of Disabled People

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