So what is the ultimate function, I am if nothing else a terrible functionalist, of aborting a disability? I would argue that it defines normality for a consumer culture dependent upon perpetuating the myth that it actually exists.
The passing of the freaks is not a casual incident in the history of the circus, but a striking illustration of the tendency which has been in progress for centuries toward the humanizing of our amusements.
What will be the condition of civilized nations four or five centuries hence, when society is entirely composed of degenerates, and when the whole lump of humanity is permeated with the leaven of physical, mental, and moral perversion?
"I smell a rat! I think the bottom line will be the elimination of autism as we know it. Autism tampering will be like dropping the atom bomb. Genetic tampering is wrong. We must spend money on understanding autism, instead of genetic tampering."
Imagine that a political leader went before the cameras, one day, to make a public announcement like this: "We have a very serious crisis in dealing with a minority population of several million people. Educating their children in our schools is getting to be quite a bother. Providing services for them is too much of a nuisance and expense. They are just too different from us: their strange ways are incomprehensible, and we don't need them in our society. Therefore, we are building gas chambers that will be completed in 5 to 10 years, so that we can solve the problem once and for all."
The incidence of autistic spectrum conditions is approximately 1 in 110. This equates to a global autistic population of about 55 million. It is likely that millions more are genetically autistic and, because of a favorable combination of genes or the good fortune to avoid environmental stresses, have not developed any problems significant enough to warrant a diagnosis. The number of people whose genes would be identified as "defective" by a test such as Dr. Buxbaum describes could easily be more than 100 million. That is equivalent to more than one-third of the US population, or the total populations of the UK, Canada, and Australia combined.
The more gut-wrenching form of wrongful life litigation occurs when the parents in question do want a child. They just don't want this child... The wish implicit in the lawsuit... is that the baby in question had never been born.
There is a popular belief that feeble-mindedness is greatly on the increase. We do not know, and are not likely to know, whether or not there is now relatively more feeble-mindedness than there was fifty or one hundred or five hundred years ago.
But almost every one of the thousands of idiots in England has some power that the legal definition declares him not to have, and that popular prejudice will not believe.
The above title comes from a recent news article that discusses the unholy interplay among the ever-increasing number of genetic disorder labels, the prenatal testing and abortion industries, and society's prejudices against neurological minorities. We are fast approaching the point, if we are not there already, where "normal" becomes an artificial construct that the majority of human beings now living cannot meet.
"To disseminate knowledge concerning the extension and menace of feeblemindedness, and initiate methods for its control and ultimate eradication from the American people" is the purpose of the Committee on Provision for the Feebleminded
The discovery of genetic factors will eventually hopefully lead to new approaches to diagnosis and intervention, and perhaps even prevention and cure. At the same time, genetic issues raise a range of ethical and policy issues.
Across the last century we have learned to value normalcy above difference, and beauty above all. This is the history of the euthanasia movement, and the discrimination that persons in your community have faced. We're talking about "difference," about "ugly," about "them". Genetics is fueling a new discrimination that is eugenic in nature. We've returned to an early 20th century vision that says, "do away with the different" and celebrate the lovely, irrespective of the person inside... With the coming of amniocentesis, and the knowledge of genetic potential, the fight between advocates of normalcy and defenders of beauty entered a new phase. It's cleaner to prevent a birth than to accept the difference that may result. At first, this wasn't seen as an ethical problem by most. As we learned more about genetics, and about the human genome, the eugenics that flourished early in the century was resurrected.
(W)e must persuade professionals to change what they tell prospective parents about life with disability; convince those parents to learn about how children and adults in todayís world survive and thrive; and then endorse the choices people make about their reproductive and family lives.
If one thinks for even a moment about the history of our societyís treatment of people with disabilities, it is not difficult to appreciate why people identified with the disability rights movement might regard such testing as dangerous. For the members of this movement, including people with and without disabilities and both issue-focused and disability-focused groups, living with disabling traits need not be detrimental either to an individualís prospects of leading a worthwhile life, or to the families in which they grow up, or to society at large.
Meanwhile, the push is getting greater to detect autistic people before we're born, so that we don't have to be born. Eugenic abortion ó as one person put it not the right to choose whether, but the right to choose who ó is already so commonplace towards people with Down's syndrome that one activist with Down's syndrome, Astra Milberg, has commented that she feels like one of an endangered species, and several activists with Down's syndrome protested at an international genetic screening conference for their right to speak out against this a few years ago.
Extracts from EJAIB and EEIN since January 1994.
A look at the history of the American Eugenics movement will help us learn from flaws of naïve genetic judgment so that we may avoid the same mistakes and better use the knowledge, technology, and refined tools of today to enhance the quality of life.
It was only the postwar revelation of all the atrocities the Nazis committed in the name of eugenics and racial hygeine that utterly discredited this sort of thinking in the U.S. Yet, at the eve of our entry into the war, in the most prestigious psychiatric journal in the U.S., prominent physicians were debating, in essence, whether the Nazi approach to dealing with severely disabled children was the correct one, with at least as many prominent neurologists and psychiatrists arguing that it was as arguing that it was not.
Eugenicists effectively lobbied for social legislation to keep racial and ethnic groups separate, to restrict immigration from southern and eastern Europe, and to sterilize people considered 'genetically unfit.'
One expert urged "we owe it not only to the adult imbecile herself, but to humanity and the world at large to guard in every possible way against the abuse and increase of this class."
Nazism, apartheid, segregation and Ceaucescu's "orphanages" were all eugenically based schemes for social salvation. The failure of these schemes has discredited eugenics but not the eugenicists.
The ancient Spartans were the pioneers in the field of eugenics, and in the theory that the defectives should not be allowed to burden the state.
It is also conceivable that selective abortion might be used to avoid bearing children that carry what are considered undesirable combinations of genes. This is done to a limited extent now for Downs syndrome and certain other genetic conditions.
"...existences that are not only absolutely worthless, but that drag other worthy beings down negative existences..."
Rather than working towards a more social or sociopolitical 'model', modern genetics is forcing the perception of disability into becoming increasingly a medical approach both practically and publicly. This has devalued the lives of people with impairments and rather than celebrate the birth of all children, through the very notion of screening, genetic testing and selective abortion, we are portraying impairment as 'wrong' and increasing societies prejudices.
At this very moment, people with disabilities all over the world are the subject of many of the same myths, dehumanizing stereotypes and falsehoods that made their sterilization, exploitation, and extermination possible during the Nazi Era.
How can such official disdain for the frail inspire confidence in people to trust their government, knowing that that government might, the next day, decide to consider any person a threat to the national happiness?
It is important to remember the legacy of eugenics: in the name of "human betterment," scientific ideas and practices can be used to promote and reproduce extraordinary inequalities.
Even if we were more assured than we should be that our technical control will be complete, we would continue to wonder whether we will be able to distinguish between what we can do and what we ought to do.
Would it affect our understanding of moral equality if we learned that genetic differences help to explain how we behave and appear differently if we learned that some individuals are genetically predisposed to antisociality or hypergenerosity, alcoholism or teetotaling, low intelligence or high?
It is easy to assume that diseases are fixed, objective realities. A different approach is to accept that a disease is, in a sense, a relationship a person has with society.
We might try to construct a world without disability, but basically in doing so, we are embarking on a losing battle-for pain and pleasure are two sides of the one piece of paper.
Use of genetic tests might increase social stigma and tendencies towards the labelling of people who display the traits being tested. On the other hand, knowledge of a genetic predisposition may also help to reduce the stigma associated with a trait.
The history of eugenics and its disastrous consequences raises the question of the role of the genetics community in dealing with the social impact of its field.
The issues raised by the new powers that our understanding of genetics give us to decide what sort of children to have, who shall be born and who shall not be born, are frightening. This is such uncharted territory. These are dilemmas that didn't exist until our time. We have few reliable intuitions about what to do about them and virtually no principles that give us unambiguous moral guidance.
Disabled people do not oppose medical research and genetic testing if is part of an ameliorative therapy or treatment for illnesses or genetic conditions. What we do oppose is eugenic cleansing carried out in the name of treatment. The price is too high -- for us and for everyone else. Today disabled people, tomorrow, who knows?
A coterie of scientists...trace anti-social behavior to DNA and recommend that the most efficient way to improve society is by screening out and sterilizing people diagnosed as genetically unfit.
When women choose abortion based on genetic prenatal testing, says Asch, 'nobody finds out about the rest' of the child. Prenatal testing for genetic defects thus sends a message to society that life with a disability is worse than no life at all.
We seem to be increasingly unwilling to accept what we view as imperfection in ourselves and others. As health care costs skyrocket, we are coming to accept a bottom-line, cost-benefit analysis of human life.
One characteristic of the targetgroup for elimination is that their characteristic is viewed in a negative way... devalued and associated with the thought that their characteristic is a burden to society and ensures a low quality of life to the carrier...
The time may well come when a voter's mental test will take the place of the so-called literacy tests now used in many states.
At the beginning of a new century we stand before the problems of degeneracy and criminology, in some measure discouraged, yet thoughtful. From the standpoint of ethics we must regard these unfortunates as our wards.
Not diagnostic labels or degree of impairment, but social exclusion coupled with disempowerment casts some into marginalized, socially oppressed 'eternal childhood' roles; inclusive processes coupled with adequate and flexible support counteract this.
There is no doubt that there are inadequate social supports for children with disabilities. It is not, however, appropriate to arbitrarily choose medical compensation to remedy this.
Goddard's genealogical research revealed that the union with the feeble-minded tavern girl resulted in generations of "mental defectives" who were plagued by illegitimacy, prostitution, alcoholism, epilepsy, and lechery.
'to give certain dysgenic groups in our population their choice of segregation [concentration camps] or sterilization,' advocated the founder of Planned Parenthood, Margaret Sanger in April 1932.
Table of Contents of what appears to be a fascinating book.
Many of the pseudoscientific, psychiatric and social theories that advocate locking up (i.e. "institutionalisation"), sterilisation and killing (i.e. euthanasia) of people considered by some to be 'not worthy of living' fall under the heading of eugenics
A broad and humanistic perspective may be considered to have two basic ethical requirements: respect for human beings and human dignity, and the limitation of harm to, and suffering of, all human beings.
Scientific thought, specifically the theories of racial hygiene, and the political conditions of a totalitarian dictatorship, acted symbiotically to devalue the intrinsic worth to society of those individuals with mental and physical disabilities.
Early discovery of morons is granted as desirable, but what then? Reduction of the number of their offspring is also regarded by most people as desirable. But by what means? Segregation? Sterilization?
Explores the way eugenicists in the US and Germany used photography their theories about breeding better humans.
The danger we will need to guard against is the development of a kind of eugenic common sense, that it is irresponsible to refuse to undergo tests, and that every child has the 'right' to a healthy genetic endowment.
Does genetic screening for defects that cause intellectual disability presuppose a value judgment about the lives of intellectually disabled person, and, if so, what is the basis for such judgments?
When success is measured by the reduction in the number of people with Down Syndrome that are born, then it is clear that it is not the interests of the disabled individuals that are being considered.
Joseph is a stark critic of genetic research into mental illness, and so perhaps it is not surprising that he finishes the article warning that such research could support similar views today. Whatever you think of Joseph's take on the issue, however, it is surprising to learn that respected clinicians in America were supporting eugenics during the the time of World War Two.
It is imperative that those who value the beauty, vitality and wonder of the natural world begin organizing now to ensure that human beings do not become technological artifacts.
Practically all those engaged in the work of caring for, teaching and training this class, are of the opinion that none of those discharged are capable of self-support in all that the term implies.
In effect, by agreeing that sex selection is appropriate for certain medical conditions, would we be saying that the lives of those who have these disabilities are worth less than those of others?
Fairness in the use of genetic information; privacy and confidentiality; psychological impact and stigma; reproductive issues; clinical issues; uncertainties; conceptual and philosophical implications; health and environmental issues; commercialization.
How much shame falls on parents today who prove to have "inferior" genes by their producing"defective" children? Another question: How reasonable is it for parents who subscribe to "my kid is part of the autism epidemic" thinking, to promote the idea that if there are any more of these kids they'll utterly destroy the economies of the states and nations where they reside, and they do use that reasoning in the things they write. Such as this from Rick Rollens in April of 2004: "The social and fiscal disaster that is the autism epidemic is upon us. God help us." That Rick Rollens sure has a flair for the dramatic, eh? He forgot to add "every one", though.
it is not art, but law and forensics that ultimately will impel the genetic technologies to be employed in behalf of attempts to identify who is 'authentically' in one category or another.
In this paper, I discuss this 'spectre' of 'designer babies' to determine whether we can justify such a hostile reaction to the possibility that human beings could be engineered to learn and remember better.
The plan... published in the Journal of the American Psychiatric Association suggested that severely-handicapped children, like my four-year-old, should be killed but not until their fourth birthday... they did not want to make any mistakes.
Dr. Peter Singer... believes that it should be lawful under some circumstances to kill, at any age, individuals with cognitive impairments so severe that he doesn't consider them 'persons.'
The methods used for mass extermination in the Nazi death camps originated and were perfected in earlier use against people with physical, emotional, and intellectual disabilities. This article describes the historical context of attitudes toward people with disabilities in Germany and how this context produced mass murder of people with disabilities prior to and during the early years of-World War II.
Negative eugenics measures in VT followed the lead of other states in providing institutions for segregation of handicapped persons, followed by laws permitting sterilization and denial of marriage licenses to those deemed 'mentally unfit."
Terman left a difficult legacy. On one hand, his work inspired almost all the innovations we use today to challenge bright students and enrich their education. As he followed the lives of intelligent kids, he also became their best publicist, battling a baseless prejudice. As a scientist, he devised methods for assessing our minds and behaviors, helping put the field of psychology on an empirical and quantitative foundation. He was one of Stanford's first nationally prominent scholars, and as a department chair for two decades, he transformed the psychology department from a languid backwater into an energetic, top-ranked program. He established the longitudinal method and generated an archive of priceless data. Longitudinal studies have "become the laboratory of the social sciences" and are growing in importance as the population ages, UNC sociologist Elder observes. On the other hand, as biographer Minton points out, the very qualities that made Terman a groundbreaking scientist -- his zeal, his confidence -- also made him dogmatic, unwilling to accept criticism or to scrutinize his hereditarian views. A similar paradox existed in his social agenda. Terman was a visionary whose disturbing eugenic positions and loving treatment of the gifted grew out of the same dream for an American meritocracy.
Goddard believed that feeblemindedness was an inherited trait, therefore the disease could theoretically be eliminated all together by sterilizing feeble-minded individuals so they could no longer reproduce. Eugenics is the name given to this philosophy.
That said, if you had been Gates' potential mom or dad 50 years ago, what would you have done if you knew about his abilities and flaws before he was born? Would you have wanted a child that would go on to do great things but would have a hyper-nerdy personality? What if the decision about whether to have a child like him also carried a risk that he might be born with far more serious disabilities? Would you have decided to carry the baby to term?