Should Doctors Dictate? – By Dina Bowman


From: Women and Disability – An Issue. A Collection of writings by women with disabilities. This booklet was produced by the Melbourne based Women with Disabilities Feminist Collective in the late 1980’s. The exact publishing date is unknown. Copyright.


 

Preface: Children Have Become The Ultimate Commodity

In 1981, the International Year of Disabled Persons, I wrote the following article. Technology has since developed and there are now more sophisticated tests to detect disabilities pre-natally. Society is no more supportive or accepting of people with disabilities than it was five years ago. The rhetoric of “community care” hides the reality of unsupported women caring for their children with disabilities. Despite the rhetoric, women and children do not come first in this society, especially if the woman or child is disabled.

The technological option of terminating a pregnancy BECAUSE THE FOETUS IS ABNORMAL can be used as a means of abdicating responsibility for the care of people with disabilities and of denying them basic human rights. Many people have said to me, of my daughter “Well, why didn’t you have a test? This was said without malice and with genuine curiosity, despite the fact that I was a young healthy “low risk” mother to be and that my daughter WAS ALIVE AND A MEMBER OF THE COMMUNITY.

Mothers of children with disabilities are regarded with a mixture of pity and disgust. As long as women play the role of martyr and can be regarded as “wonderful woman” (“I don’t know how you manage!”) the community can evade responsibility, while having a vicarious warm glow of the heart when reading human interest stories about the struggles of families with disabled children.

The development of technology has increased the pressure on women and has undermined the rights of children and adults with disabilities. A hierarchy of disabilities has been created. Act of grace payments are made to allow so called “normal” children to have heroic surgery such as heart, lung, and liver transplants (Paul McKee for example) and yet children with disabilities (especially those with intellectual disability) are still denied routine surgery to correct minor congenital abnormalities.

The most famous recent example is that of Baby Doe. This baby was born in the U.S.A. with a blocked oesophagus and was denied life saving surgery on the advice of his parents and doctors. He died of starvation despite the efforts of child welfare workers who went to court to try and get an injunction to force the doctors to carry out the necessary surgery, and despite the fact that there were twelve families ready to adopt him and a surgeon who was willing to operate for free. No parent of a “normal child” would be permitted to deny their child simple life saving surgery. Baby Doe was denied surgery BECAUSE he also had Down’s Syndrome.

The right to life for babies with disabilities has been picked up as an issue by the Right to Life movement who defend the right to life in isolation from the political or social situation of women. The right to decide whether or not to have a child is a fundamental right of women. This right should not be conditional. Most women who decide to have an abortion do so in early pregnancy having decided not to have a child, any child, at that time.

Prenatal diagnosis forces women to choose between different “types” of babies. Many disabilities are impossible to detect pre-natally. Many disabilities occur at birth, in early infancy or during childhood. Are children with congenital or genetic disabilities to be treated differently from other children with disabilities? The cause of disability should be irrelevant to the human rights of children.

Bioethicists now argue about the definition of humanity. Philosophers can argue with equanimity that an infant with severe disabilities is ‘non human’. The creation of a hierarchy of humanity dehumanises us all.

As a feminist I believe that eugenicist bio-technology oppresses all women by placing the responsibility of producing “perfect” children on mothers, while denying women control over the technology. The same technology oppresses our children by denying them their inherent humanity and by regarding them as products to be perfected for a male dominated society.

Disabled babies are being terminated pre-natally and denied rights after birth while thousands of dollars are poured into the production of IVF (in vitro fertilisation) babies. These embryos are screened carefully prior to implantation to attempt to ensure ‘normality’. The IVF programme is seen as a means of relieving the suffering, of disablement, of infertile couples; children have become the ultimate commodity.

Pre-natal diagnosis such as amniocentesis which can determine chromosomal abnormalities, ultrasound which can determine structural abnormalities, and blood tests such as the alphafetoprotein test which can detect neural tube defects, like spina bifida, can determine whether or not a foetus has certain abnormalities. The women then has the option to terminate the pregnancy or prepare for her disabled child.

Several arguments are used to justify the termination of abnormal foetuses; it benefits the mother (women have the right to have “normal” babies), it benefits the baby (by eliminating inherited diseases and by sparing the child a life of “suffering”), it benefits the species (by improving the “quality” of people), and it benefits society (by relieving us of the burden of caring for people with disabilities).

Most people would syrnpathise with a woman’s decision to terminate a pregnancy which was shown to hold an abnormal foetus. It is not easy to care for a disabled child in an uncaring, unsupportive, resentful society. But the screening procedure itself, which provides the woman with the information about the foetus seems destined “to degrade society’s willingness to accept and care for abnormal children, and at the same time enlarge the category of unacceptable abnormality” [1]. In a male dominated society, being the “wrong” sex can be seen as just cause to terminate a pregnancy.

As Tabitha Powledge, geneticist at New York Hastings Centre Institute of Society, Ethics and Life Science says,

“Quite frankly, I don’t think it is a serious, untreatable, hereditary condition to be a boy or a girl and to make such a choice is the most sexist thing anyone can do” [2].

Nevertheless, many parents want to select the sex of their child. The pressure on women in societies such as India are immense and amniocentesis is seen as an alternative to female infanticide. Sushila Gopalan, member of parliament said in 1982:

“We are living in a country with a strong sex bias against women. In Uttar Pradesh, in Bihar and Rajasthan baby girls continue to be killed after birth, many more women and girls die from malnutrition and lack of medical care, and now the killing of female foetuses has become big business” [3].

Women now have the “choice” whether or not to go ahead with a pregnancy if the foetus is shown to be abnormal. But often this choice is based on misinformation or coercion. There is a fine line between a responsible action and a required action (and it depends who defines what is responsible).

In the last few years we have seen the development of ethics committees in hospitals and research institutions. These committees are given the task of determining what is ethical medical practice and research. There is little public accountability and there is no accountability to consumers of services. As with most decision making bodies in this society ethics committees are male dominated and serve to uphold the interests of the male status quo. Should doctors dictate who should be born and who should be allowed to live?

Behind our aversion to disability and abnormality lies an image of the perfect human. The very language of “defect” “abnormality” “disease” and “at risk” presupposes a prototype of perfection which is unattainable.

Who defines normality? Can we assume that the predominately white, male scientists have our best interests at heart? The history of the birth control movement and its links with the eugenics movement suggest we cannot. Birth control pioneers accepted racist, anti working class and eugenicist ideas. In 1919 Margaret Sangr, the founder of the birth control movement wrote “more children for the fit, less for the unfit, that is the chief issue of birth control” [4]. Eugenicists were in favour of “selective breeding” from “good stock” particularly to prevent “racial suicide” of white races, backed by compulsory sterilisation of “bad stock”. Obviously, whether you were “good” or “bad” stock depended on your social and ethnic background.

Where do we draw the line and who draws it?

If it is acceptable to terminate a pregnancy because the foetus is abnormal, why shouldn’t it be acceptable to kill a baby who is born with disabilities or an adult who is disabled or diseased? Peter Singer of the Centre for Human Bioethics, Monash University, argues that “killing a defective infant is not morally equivalent to killing a person” [5]. Being disabled negates any humanity. It is argued that to have a disabled child is immoral and irresponsible because “to deliberately and knowingly bring a diseased or defective child into the world, injures society, very probably injures the family and certainly injures the individual” [6]. The social construct of handicap and the oppression of people with disabilities and of women is turned into a medical problem.

In the case of severe and incapacitating genetic or congenital conditions does the foetus have the right not to be born? Several law suits have been filed in the USA on this point. In one case involving a child with Down’s syndrome the court argued that life with a disability was better than no life at all, as the child “will be able to love and be loved and to experience happiness and pleasure – emotions which are truly the essence of life and far more valuable than the suffering she will endure” [7].

However, in another case involving a child with Tay-Sachs disease, a terminal degenerative condition, the judge ruled that the child with a genetic defect could sue a doctor, pathology lab or even in some cases his/her own parents if he were “wrongfully born” [8].

It is difficult for parents to sue chemical companies and governments for pollution that has caused abnormalities in their unborn children. As the Doctors Reform Society said in their submission to the House of Representatives Standing Committee on Environment and Conservation:

“The democratic philosophy that a chemical is ‘innocent until proved guilty’ must be rejected. Chemicals are not people and since their toxic effects may not appear for generations they should be considered ‘evil until proved good’ [9].

Spraying of Forestry Commission property with 245T goes ahead despite the protests of pregnant women in the area, as it has not proved absolutely to be the cause of birth defects [10].

Often economic arguments are used to justify prenatal selection. It is cheaper to screen out ‘defectives’ than to have them a ‘burden’ on society. Only productive members of society should be allowed to reproduce. A person’s right to have a child is weighed against the child’s ‘right to be normal’. Scientists want to improve the ‘quality’ of the population. Earlier this century eugenicists claimed that crime, prostitution, alcoholism, pauperism and feeblemindedness were hereditary and that sterilisation was the solution. Social problems were said to have a genetic basis and therefore society was absolved of any responsibility. There is a link between socio-economic status and the incidence of birth defects. Social factors such as good nutrition and good ante-natal care play a great role in the health of both the woman and the child [11].

The re-emergence of the eugenics movement is well underway. Forty six states in the USA have some mandatory genetic screening programme for new born infants. A recent screening law presented to Illinois State Legislature is indicative of the eugenics trend; it would require genetic screening of all applicants for marriage licences. A supporter of the legislation said “we are going to have to reduce the number of non-productive members of our society” [12].

The professor of medical ethics at the Virginia School of Medicine said: “It is cruel and insane to deprive normal but disadvantaged children of the care we could give them with the $1,500 million we spend in public costs for preventable retardates” [13]. Economic arguments like this, ignore the social premises on which they are based and use people with disabilities as a scapegoat for society’s deficiencies. Once the cost benefit analysis enters the argument a price is put on everyone’s head. This necessarily degrades people and society and calls into question the rights of all of us who are or will become old, sick, frail, weak, poor, dependent, disabled or deviant.

Prenatal selection and genetic manipulation are a technological fix, an easy answer to a complex problem of social inequity. It raises more profound problems than it solves.


References

[1] P. Ramsey: “Screening: An Ethicists View” Ethical Issues in Genetic Engineering, Bruce Hilton et al Eds. 1973.

[2] Tabitha Powledge quoted in, “Boy or Girl? It’s on now – the rush to choose,” Diana Callender The Sun, 5/3/80.

[3] Viola Roggencamp: Abortion of a special kind: Male sex selection in India. Test Tube Women Ed Rita Arditti et al. 1984, Pandora Press.

[4] New Doctor, Sexuality and Contraception, Issue 17.

[5] Peter Singer: Practical Ethics as quoted by Jane Sullivan “Thinker who Shocks” The Age, 25/6/80.

[6] J.E.Fletcher: The Ethics of Genetic Control 1974.

[7] Graham Chedd: “Wrongful Life” Science 81, February, Page 41.

[8] ibid.

[9] New Doctor, op cit, page 33.

[10] “Spray to go ahead” The Sun, 28/7/81.

[11] Pia Brous: “Some changes in Obstetrics and in Expectations of Obstetric Care,” Childbirth, Issue No.15, New Doctor.

[12] Ted Howard and Jeremy Rifkin, Who Should Play God? 1977, page 90.

[13] Fletcher, op cit, page 160.


Further Reading

Test Tube Women What Future Motherhood? Edited by Rita Arditti, Renate Duelli, Klein and Shelley Minden. Pandora Press 1984.

The Reproduction Revolution New Ways of Making Babies. Peter Singer and Deane Wells Oxford University Press 1984.

Test Tube Babies – A Guide to the Moral Questions, Present Techniques.

Future Possibilities. Edited by William Walters and Peter Singer Oxford University Press 1982.