The subtitle of this paper "who has the right to decide who or who should not inhabit this world" is the rephrasing of a question asked by Hannah Arendt in her book about Adolf Eichmann and the Nazi extermination programme.
Whenever the question of Nazi eugenics is raised in any discussion about ethics and their application to contemporary issues such as the development of recent reproductive technologies, people recoil in horror and accusingly declare: Extremism! That is not relevant to enlightened western democratic health policies and legislative platforms.
The linkages between German so-called "health" programmes in the 1930s-1940s originating in British and US eugenics theories, and the practice in Australia in 1996 of modern reproductive technologies, especially pre-natal screening for foetal abnormalities and genetic engineering, reverberate tellingly today.
In this paper I wish to explore the implications of the resurgence of the "new eugenics" as a philosophy underpinning modern reproductive practices from the perspective of the abuse and denigration of the rights in people with disabilities in general and women with disabilities in particular. These practices, I believe also infringe women's rights and should be a matter of grave concern for all feminists. The following discussion is not about the rights and wrongs of the abortion debate but adopts a disability rights interpretation of new reproductive and genetic technologies.
Firstly, let us examine what is meant by eugenics. Eugenics
has been defined recently as:
"the doctrine which claims that it is possible and desirable, through selective breeding and the elimination of undesirable individuals, to alter the hereditary qualities of a race or population".
Eugenics policies originated in the late 19th century in Britain and the United States. The term derives from the Greek word for "wellborn" and in 1883 was first coined by Sir Francis Galton, a cousin of Charles Darwin and was certainly influenced by Social Darwinism: the idea that life is a struggle between the fit and the unfit. The eugenics movement was based on the mistaken notion that all disabilities were inherited and that the "unfit" - people who were "feeble-minded, insane, epileptic, diseased, blind, deaf [and] deformed" were to be bred out of existence. A major factor in the growth of this movement was the prevalent assumption of 19th century science that human perfection could be achieved through a combination of technological and social manipulation, an increased understanding of heredity, and the fact that surgical techniques for sterilisation had become available.
In the United States compulsory sterilisation laws were passed in the early 1900s. By the 1930s, in addition to sterilisation laws, 41 states had laws which prohibited the marriage of the "insane and feeble-minced", 17 prohibited the marriage of people with epilepsy; 4 outlawed marriage for "confirmed drunkards". By January 1935, some 20,000 people with disabilities had been sterilised, nearly half of them in California. The Californian law was not repealed until 1980 and more than 20 states today still have operative eugenics laws.
In Britain, a significant supporter of eugenics was the distinguished biologist, Julian Huxley, brother of Aldous (who wrote "Brave New World"). In 1941, when the Nazis were ear-deep in implementing their eugenic extermination programme of people with disabilities, Julian Huxley was arguing for sterilisation of "mental defectives".
From a disability rights perspective, the eugenics movement in Britain and the United States grew in response to several related fears:
Eugenics in Nazi Germany was called "racial hygiene" and was made respectable in medical and academic circles in the 1920s. It is important to stress that its origins were not based in Nazi doctrine but adopted by the Nazis at least a decade after tireless promotion by the medical profession, particularly prominent psychiatrists. Eugenic sterilisation laws aimed at people with disabilities were passed barely six months after the Nazis took office in 1933 and these laws were written by eminent doctors. The laws targeted genetically determined conditions such as "inborn feeblemindedness, schizophrenia, manic depression, hereditary deafness, blindness, epilepsy, Huntington's disease, severe malformations and alcoholism". By 1939 between 300,000 and 400,000 people with disabilities were sterilised under this program. These sterilisation laws and the subsequent euthanasia program aimed at "lives not worthy of living" were enthusiastically implemented by the medical profession as being in the better interests of public health and an economic imperative.
The secret euthanasia programme aimed specifically at people with disabilities commenced in 1939, after a widespread propaganda programme (including high school text books asking students to calculate the costs to the Third Reich of maintaining mentally ill people in various kinds of institutions for different lengths of time). The programme was initially aimed at children under three with disabilities and people with psychiatric conditions in state run hospitals and institutions. By 1941,70,000 psychiatric patients had been killed by gassing or lethal injection and then the programme extended to children with disabilities over three and other social undesirables. Families were told that their relatives had died of natural causes. When the programme eventually ceased because of church and family protests, it is estimated that close to at least 500,000 people with disabilities had perished.
I hear you howl: what has this got to do with us today in humane compassionate Australia, the land of a fair go? Well, I argue: lots. Firstly eugenics practices throughout the 20th century have persistent links with the medical profession's long distaste of disability, deformity and any abnormality, inherited or acquired. Secondly, these practices can only be fostered in societies where disability-phobia persists, and includes Australia 1996, despite disability discrimination legislation and all of the improvements in community integration and support services that have been implemented in the past 25 years.
Blatant eugenics policies aimed at the elimination of disabilities through sterilisation programmes have been introduced in China and Japan in the past 5 years. China's public health programme aimed at eradicating "inferior births" consists of the screening of all pregnant women for foetal abnormalities, if abnormality is detected the mother is to be coerced into having an abortion and sterilised to prevent her from producing other such children. Under this programme people with intellectual disabilities and recognisable genetic disorders are to be sterilised.
Similarly in Japan, a recently introduced eugenics law enforces sterilisation on people with detectable genetic conditions of a physical, psychological or intellectual origin. I am informed that this law is being actively opposed by a strong coalition of women with disabilities and women from the pro-choice lobby.
In Australia, sterilisation of women with intellectual disabilities is practiced today without (thank goodness) the sanction of law. But certainly privately and covertly. Last weekend The Weekend Australian published an article entitled "Death Before Deformity" which examines the impact of new pregnancy tests on the incidence of foetal abnormalities in the Australian population and the attitudes towards disability which are sanctioning these practices.
The writer asks:
...... are we becoming less tolerant of defective offspring, or simply exercising the choice provided by the new prenatal tests? What ever the driving force, technology and taste are moving us slowly but surely down the road towards an expectation of a perfect baby - or rather one free of major imperfections. (Eccleston)
In Victoria, the number of malformed foetuses terminated under 20 weeks gestation rose from 153 in 1992 to 186 in 1994. In 1993 61 Down's foetuses were diagnosed in Victoria, all of whom doctors claim were terminated. In South Australia in 1991, more than 70 % of foetuses with spine bifida were terminated compared with about 20% in 1980. In 1987, 22% of all Down's pregnancies in South Australia were terminated but since a certain diagnostic blood test has been available to all South Australian women the proportion seeking termination for Down's Syndrome rose to 60%.
One woman who underwent a termination following the diagnosis of a Down Syndrome foetus was reported as stating that her nineteen month old son didn't need "a little sister who's going to be a vegetable for the rest of her life."
While the majority of terminations have been for "serious conditions", medical specialists report that there is an increasing trend to abort for abnormalities of less severity, such as a missing hand. A recent termination in the Netherlands which caused a public outcry was for two foetuses diagnosed with an hereditary condition causing blindness in middle age.
Interestingly the women interviewed who had actually given birth to a Down's child or children with other disabilities strongly affirmed their love for, and commitment to them and asserted how much these children had enriched their lives. It would appear then that the phenomenon of the increase in terminations for foetal abnormalities is based on double standards: fear and ignorance of disability rather than on informed choice and unbiased information about actual experience of disability.
Eccleston's balanced and excellent article concludes with a
telling comment from a mother-to be:
... someone different catches a train, or walks down the street, and you can't not look and them and think, poor things. When you have a child you want it to be perfect. And then you see these ... well they're not so perfect, is possibly what people would think ...
These perceptions about the new reproductive technologies and their dangerous eugenic components are strongly endorsed by the Canadian Disability Rights Council (CDRC). It believes that the claims made by these technologies: that they reduce the incidence of disability and expand the range of reproductive choices for women are misleading and suspect.
The claim that disability is reduced is false because the majority of disabilities are not genetically related and rather than increasing choices for women, the CDRC asserts that such choices are actually reduced specifically for women with disabilities and non-disabled women in general.
Pre-natal screening and diagnostic technologies underscore the extent to which eugenic values are operating in their promotion and application. Eugenics operates when women with disabilities are pressured not to have children, when non-disabled women are encouraged to use the tests during pregnancy to detect and eliminate ever increasing numbers of detectable disabling conditions. The presumption that a positive test result will inevitably be followed by an abortion is particularly repugnant to, and disrespectful of, people with disabilities.
The message about disability is loud and clear: the prospect of having a disabled child is not acceptable for many prospective parents. The message to all women is equally clear: it is neither socially acceptable nor responsible to carry to full term a foetus with a disabling condition. With the emphasis on "perfect babies" the message of the new technologies is that disabilities can and must be weeded out by eliminating foetuses with certain defective traits. This is clearly a modern version of the earlier eugenics perception that disability is inherently bad. Given the continuing widespread discrimination against people with disabilities, for a woman to give birth to anything less than a perfect baby is not only socially and economically undesirable but irresponsible.
Thus the CDRC argues that emphasising the elimination of disability through reproductive technology without addressing the social context in which they are promoted and applied has disastrous implications for people with disabilities such as:
The view that disability is inherently bad and people with disabilities lead blighted, tragic lives ignores and invalidates our actual lives and experiences. We have repeatedly asserted that it is not the disability so much which restricts equality and full participation in society, but the combination of social stigma, systemic barriers and persistent use of demeaning devaluing language.
For women with disabilities the new reproductive technologies have a particular meaning, informed by the historical experience of oppressive attitudes towards our sexual and reproductive lives. Such is the widespread belief that any woman with a disability is asexual, and if she is, then she shouldn't be! We also believe that the kind of counselling offered all women on these technologies is strongly biased and coercive. For us reproductive rights includes the recognition of our sexuality and right to bear and raise children. We also demand:
These rights if implemented enhance the reproductive autonomy of all women.
It is clear then that the new reproductive technologies and the way they are promoted and applied in relation to people with disabilities are negative and strongly eugenic. The Canadian Disability Rights Council has developed a set of principles for the removal of these elements and which respect and enhance both disability equality and sex equality rights. These principles are currently under consideration by Women With Disabilities Australia for endorsement. These principles include:
The rights of all people are enhanced by the eradication of discrimination against people with disabilities.
Arendt, Hannah, Eichmann in Jerusalem: A Report on the Banality of Evil, Penguin Books, Hammondsworth/New York, 1977.
Canadian Disability Rights Council and Disabled Women's Network Canada, Four Discussion Papers on New Reproductive Technologies, September 1991.
Connors, Debra, "Disability, Sexism and the Social Order", Browne S. E., Connors D., Stein N., (Eds) With The Power of Each Breath - A Disabled Women's Anthology, Cleis Press, San Francisco, 1985.
Eccleston, Roy, "Death Before Deformity", The Australian Magazine, 20th-21st January 1996.
Farrant, Wendy, "Who's for Amniocentesis? The Politics of Prenatal Screening", in Homans, H.(Ed) The Sexual Politics of Reproduction, London, 1985.
Finger, Anne, Claiming All Of Our Bodies Reproductive Rights And Disability, Browne Susan E., Connors Debra, Stein Nanci, (Eds) With the Power of Each Breath - A Disabled Women's Anthology, Cleis Press, San Francisco, 1985.
Goundry, Sandra. "The New Reproductive Technologies", Public Policy, and the Equality Rights of Women and Men with Disabilities", in Baser G., Eichler M., and Lippman, A. (Eds) Misconceptions - The Social Construction of Choice and The New Reproductive Technologies Voyageur Publishing Quebec, 1993.
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Morris, Jenny, Chapter 2: 'Lives not Worth Living', Chapter 3:"The Chance of Life' in Pride Against Prejudice, A Personal Politics of Disability The Women's Press, London, 1991.
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Paul, Diane B., "Eugenic Anxieties, Social Realities and Political Choices", Social Research, Vol 59, No.3 (1992)
Ralph, Sue "Existence Without Life: Disability and Genetics", Australian Disability Review 1-95, Commonwealth Department of Human Services and Health 1995
Wendell, Susan, B., "Toward a Feminist Theory of Disability" Hypatia Vol.4, No.2 (1989)
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