Pre-Natal Testing and Selective Abortion: The Development of a Feminist Disability Rights Perspective


A paper by Melissa Masden. Copyright 1992.


Abstract

Pre-natal testing is one aspect of the new reproductive technologies that has not received a great deal of attention, unlike in vitro fertilisation for example. The consideration of pre-natal testing that has occurred, has taken place within the wider context of abortion. A re-examination of pre-natal testing is desirable because of the way that it has furthered the medicalisation of pregnancy and childbirth, and because of its potential (already partly realised) to remove decision- making control from the hands of women. The disability rights movement has grave misgivings about the ideology of pre-natal testing and selective abortion. This has in part been translated into an anti-abortion stance. Given the history of reproductive abuse (forced sterilisation, coerced abortion etc) against people with a disability, this anti-reproductive autonomy position is short sighted. A feminist disability rights perspective examines the social attitudes that influence the decisions women make in pre-natal testing and while questioning these attitudes, maintaining women’s right to reproductive autonomy.


 

Feminist writers and thinkers have been at the forefront of questioning and examining the issues raised by various reproductive technologies. They have challenged the notion that all science is good science, that science and scientific advances are value-free and objective, and they have critically examined the part that women play in these technologies. As a result there is a wider reluctance to uncritically accept advances in technology, especially reproductive technology. Issues of particular concern have been in vitro fertilisation, surrogate motherhood, and embryo experimentation. An issue of apparent lesser concern has been that of pre-natal testing.

McDonough (1990) believes that feminists have not only failed to question pre-natal testing, but have accepted it as part of routine obstetric care for an ever-expending range of age groups. Rapo (1988) describes how amniocentesis is becoming an increasingly common procedure in the USA and the age at which it is automatically offered has dropped from forty down to the lower thirties. Common sense suggests that these tests are possibly more routine in Australia because their cost can be covered by a national health system and conceivably because the costs associated with a child with a disability will have to be borne by that same system. This has all happened despite the fact that feminists have consistently sought to wrest control of their bodies from the medical profession, and despite strong criticism of the medicalisation of women’s health.

In recent years, the disability rights movement has attempted to question the ideology that regards abortion as the, only option when pre-natal testing reveals a birth abnormality. This ideology is seen to reflect community attitudes that view the lives of people with a disability as tragic, worthless and overly burdensome. While concern has been expressed for the ‘unborn disabled’, pre-natal testing and the ideology behind it are believed to have great implications for the lives and the quality of life of people with a disability.

In this essay, I would like to compare and hopefully reconcile approaches made by feminists and disability rights activists to the issue of pre-natal testing. I will examine possible difficulties with these respective positions and how they might be resolved. I will firstly consider current mainstream thought regarding the issue of pre-natal testing and discuss why a re-examination of pre-natal testing by feminists might be desirable. My discussion will then turn to the problems associated with a disability rights perspective which does not allow women’s reproductive autonomy. Finally, I will look at the development of a feminist disability rights perspective on pre-natal testing.

Pre-natal testing is an umbrella term covering a range of procedures including ultrasound, amniocentesis and chorionic villus sampling. The aim of pre-natal testing is to diagnose various diseases or defects in utero so that the option of selective abortion may be offered to the prospective parents. While it is beyond my capabilities to give a detailed description of these procedures, a brief description taken from Kenny (1986) follows.

Ultrasound refers to a fairly routine, non-invasive procedure where sound waves are used to project an image of the foetus onto a screen. It is used to detect multiple and ectopic pregnancies and is used to diagnose malformations of the head and neural tube, especially spina bifida. Amniocentesis is a less routine (although increasingly routine) invasive procedure where a needle is inserted through the abdomen and into the uterus to obtain a sample of amniotic fluid. The cells from this sample are cultured so as to enable an examination of the foetel chromosomal make-up. This permits the pre-natal diagnosis of any chromosomal abnormality, but especially Down’s syndrome (trisomy 21). Amniocentesis indicates the foetal sex and as such is used to diagnose sex-linked recessive disorders such as haemophilia where female carriers pass the disease to male offspring.

Alpho-feto-protein testing involves taking a sample of the mother’s blood to gauge levels of alpho-feto-proteins being produced by the foetus. High levels can be an indication of neural tube or gastrointestinal abnormalities, however such an indication would be followed by ultrasound or amniocentesis. Chorionic villus sampling, also known as trophoblast sampling, is an invasive procedure involving the insertion of a catheter via the cervix. It is useful in the detection of high-risk diseases such as thalassemia and can also be used to detect chromosomal abnormalities. Measurement of maternal blood antibodies is a procedure used to indicate whether the mother is infected with rubella. It does not give an indication however of whether the foetus will be affected. Known probabilities are used to outline risk factors. Similarly, maternal blood antibody measurement will indicate whether the mother is human immnumovirus positive (HIV positive). However there is less agreement about foetal risk probabilities in this situation.

Finally, I will refer to abortions performed after a positive pre-nataI testing result has been returned, as selective abortions. This is a somewhat arbitrary choice, as these abortions are also termed ‘genetic’ (although the motivating abnormality is not always demonstrably genetic in nature), ‘elective’ (although I will argue that in many cases women are not given a great deal of choice in the matter) and ‘therapeutic’ (although abortion for what is often a wanted pregnancy cannot be termed therapy).

It is difficult to dissociate pre-natal testing from the general issue of abortion. As mentioned earlier, there has been little discussion of pre-natal testing outside of the disability rights movement, and the discussion that has occurred has been within the context of abortion. That is, rather than discussing pre-natal testing in its own right, it has been largely considered as the motivation for an abortion. Predictably then, the examination of pre-natal testing thus far, has been typified by a right-to-choose position and-a right-to-life position. That is, feminists like Petchesky (1984) contend that pre-natal testing allows women a greater freedom of choice and enhances reproductive autonomy, while right-to-life supporters argue that abortion in any circumstance is wrong, therefore selective abortion is wrong and pre-natal testing is certainly doubtful given that its primary function appears to be justification for abortion. However since these two positions constitute much of the mainstream debate around pre-natal testing, I will outline them briefly.

Because of the association of pre-natal testing with abortion, any challenge to or questioning of pre-natal testing could be interpreted. as a challenge to abortion rights. Given then the tenuous nature of these rights in many western countries, this in itself might be reason enough to be reluctant. to critically examine pre-natal testing. But more than that, there is evidence to suggest that many women see the ;’right’ to pre-natal testing as an extension of the right to choose. The policy statement of Women’s Electoral Lobby (1984) states that: “Care of mother, new-born and foetus is essential. This includes access to pre-natal diagnostic tests especially for women considered to be at risk” (page unknown). Thus pre-natal testing is effectively associated with the notion of adequate care of mother and foetus. Since this item is preceded by an item detailing the right to reliable contraception and followed by an item regarding a woman’s right to abortion, the context demonstrates how pre-natal testing is viewed as an aid to reproductive autonomy. After all, women are the primary care givers to people with a disability, both formally and informally, and in an economic climate where governments are seeking to scale down services to people with a disability, it seems reasonable to give women a choice in taking on the responsibility of a child with a disability. Petchesky (1984) is clear about the benefits of pre-natal testing, specifically amniocentesis: “But for most, it seems nothing short of miraculous that what used to be a question of ill-fate – the responsibility for a child with severe and incapacitating handicaps – is now subject to human intervention and choice.” (p349)

Similarly, the right-to-life arguments about pre-natal testing are based on the premise that abortion in any circumstance is wrong, therefore selective abortion is also wrong, and pre-natal testing as a justification for selective abortion is thus wrong. Meehan (1984) interprets right-to-choose arguments about the quality of life as putting a dollar value on human life, thus creating a situation where we are about to decide that certain people are just too expensive. Luker (1984), writing from a pro-choice perspective, claims that right-to-life support for people with a disability’s claim to social resources is based on the fear that the less economically productive in our society will be deemed less valuable, given that their ranks are made up of in part the so-called less economically productive (housewives, full-time mothers’ etc). Thus while Luker (1984) suggests that selective abortion is the most acceptable form of abortion to the general American pub1ic, it is the least acceptab1e form to right-to-life movement, because by defending the disabled unborn, they are defending those least able to defend themselves, the weakest of the weak. Meehan (1984) describes people with Down’s syndrome as: “happier than most, possibly because of their special innocence.” (p160). The right-to-life movement in the United States is vigorously opposing the use of amniocentesis.

It is hard to describe dispassionately how offensive aspects of both these positions are. Petchesky’s (1984) description of the birth of a child with a disability as ill-fate reduces the lives of people with a disability to the level of tragic misfortune. While the right-to-life view that people with a disability are in need of special protection is paternalistic in the extreme. More specifically, not only is Meehan’s (1984) description of people with Down’s syndrome stereotypical and demeaning, it begs the question would they offer the same consideration and protection to a person with a disability who wasn’t happy and innocent? As a feminist with pro- choice tendencies, one would perhaps expect a simplistic approach from the right-to-life supporters, but more disappointing is the lack of differentiation expressed in the feminist viewpoint. As such, it is this perspective that I will concentrate upon, attempting to explain why I believe a re-examination of pre-natal testing from a feminist perspective is necessary.

As mentioned earlier, there has been very little feminist discussion of pre-natal testing. Two exceptions are Kenny (1986) and McDonnell (1984). Both briefly consider disability rights perspectives in their examinations of abortion. “Those who champion pre-natal testing generally call it a great advance for women and for parents. Those who oppose it call it a ‘search and destroy’ mission…………Handicapped people may feel offended that their kind are (sic) singled out for pre-natal elimination………………………the disabled argue that they too have a right to life, and a right not to have their quality of life judged by others.” (Kenny, 1986, p129)

Likewise: “Some handicapped rights advocates have challenged the nearly universal assumption held by medical experts that a woman should abort a defective fetus. This assumption, they say, questions their right to exist, and diminishes society’s responsibility to accommodate and respect the handicapped. Again without intruding upon the right of the woman to make what is nearly always a painful choice, feminists may want to join our voices with those who question whether abortion of an abnormal fetus should be automatic.” (McDonnell, 1984, p56)

What is the motivation then for feminists to join their “voices with those who question whether abortion of an abnormal fetus should be automatic”? McDonough’s (1990) claim that amniocentesis has slipped in as normal routine obstetric practice gives weight to the notion that pre-natal testing has added to the medicalisation of pregnancy and birth, thereby removing decision-making control from the hands of women. This in itself might be reason enough to critically examine pre- natal testing. But more than this, some authors believe that while pre-natal testing provides. an illusion of choice, the way options are presented to prospective parents permits very little choice. Saxton (1988) argues that doctors by the nature of their profession will have a skewed view of disability. They are less likely to come into contact with people managing and coping well with their disability than those having problems. She claims also that the threat of malpractice suits (in the USA) means that doctors have a vested interest in the promotion of selective abortion.

Similarly, I would contend that people with a disability represent failure to the medical profession – often we are the ones who can’t be cured – and this might also provide impetus for the promotion of selective abortion. Thus for various reasons, it can be seen that doctors are not only likely to present a worst case scenario of disability, but have reason to promote selective abortion. I would also question the part that language plays in the promotion of selective abortion. Birth ‘defects’, ‘defective’ and ‘abnormal’ foetuses are terms better suited to quality control on the production line, and hardly engender a positive view of disability.

McDonough (1990) contends that there is an action imperative inherent in amniocentesis. This action imperative, it is argued, not only reduces the individual’s ability to refuse amniocentesis, but also equates agreement to undergo amniocentesis with the intention to abort should a defect be found. It is obvious how this removes control from women’s hands.

Emery (1973) is adamant on this point: “Amniocentesis is indicated for diagnostic purposes only if parents agree to act on the results.” (p4)

The possibility of using pre-natal testing to provide information in order to prepare for the birth of a child with a disability, in the same way that many parents educate themselves and prepare for the birth of any child, is not contemplated.

Rothman (in Franklin and McNeil, 1988) asserts that pre- natal testing opens up some choices but closes down others, and forsees the day when: “the ability to control the quality of our children may ultimately cost us the right not to control that quality.” (p548)

Given the pressure exerted upon parents to undergo pre-natal testing and consent to selective abortion, one could reasonably claim that the right not to control that quality has already been lost. If we consider that people who adopt children from overseas must forgo any claim to child disability allowance and Disability Support Pension, then the day when parents who go ahead with pregnancies despite positive pre-natal test results might have to do likewise, is entirely forseeable. It is clear then that if we as feminists wish to de-medicalise our health processes and retain decision-making control, a wider examination of pre-natal testing and its role in pregnancy is urgently required. What then of disability rights approaches to the issue of pre-natal testing?

The knee-jerk reaction of sections of the disability rights movement has been to oppose pre-natal testing, selective abortion and indeed abortion for any reason. This position is short sighted and does not serve the best interests of people with a disability. It also presents the disability rights movement with a dilemma and an inconsistency. The dilemma is the same dilemma that faces the women’s movement on the issue of pornography, namely that we are seen to side with elements of the conservative forces or New Right and festival of Light/Moral Majority. While it is obvious how this poses a dilemma for the women’s movement, it is probably less clear how this poses a problem for the disability rights movement. Fine and Asch (1988) argue that the very same, New Right, pro-life forces who fight for the rights of the unborn are the ones supporting cuts to the necessary social support programs that ensure that these people can attain and maintain quality of life. From previous quotations, we can see that the attitude of the right-to-life movement , to people with a disability is paternalistic end in no way enlightened.

More importantly, people with a disability have a vested interest in advocating for reproductive autonomy. We have historically been on the receiving end of what can only be called eugenicist sterilisation programs. Sterilisation of people with a disability is still occurring. Deborah Stone reported in “The Age” on 4/8/92 that girls with disabilities were being sterilised for no apparent reason. An advertisement in “The Weekend Australian” 20/6/92 announced the formation of a Law Reform Commission to look into the sterilisation of children with an intellectual disability. Of course, the gender neutral language of the advertisement serves to conceal the fact that these children are mostly girls. Heumann (1990) reports that women with a disability are still being subjected to coerced abortions and forced sterilisations. There are also strong social sanctions against women with a disability as parents (MacKay, 1990 and McDonnell, 1991). Thus if reproductive autonomy is an absolute, we as people with a disability, cannot advocate for our own reproductive autonomy while attempting to deny women theirs. Similarly, we cannot seek to blame or punish women for the decisions they make, without considering the social forces that influence those decisions.

Fine and Asch (1999) and Saxton (1988) claim that mainstream arguments about pre-natal testing are based on erroneous assumptions about the lives of people with a disability. The first of these assumptions is broadly characterised as the notion of disability as tragedy. Newell (1990) contends that disability in itself is not tragic, although it is widely seen to be tragic. Language such as “confined to a wheelchair” and “wheelchair bound” demonstrate for exampIe how we see using a wheelchair as tragic, despite the fact that they offer mobility to many. Newell (1990) argues that the tragedy is not disability, but our reaction as a society to disability. Thus the tragedy is not using a wheelchair, but the lack of suitable access and societal prejudices regarding wheelchair users. This view of disability as tragedy leads us to regard the lives of people with a disability as universally poor. Yet the two disabilities most frequently the subject of pre-natal testing represent a continuum of abilities. People with Down’s syndrome and spina bifida experience widely varying degrees of impairment. Pre-natal testing cannot determine what the level of disability will be. But even if we could determine pre-natally what the level of disability will be, who is able to decide what constitutes quality of life? Even so, surely quality of life is determined by how we react to those disabilities and the extent to which we are prepared to accommodate people with a disability.

Many people with a disability believe that pre-natal testing and selective abortion make a significant comment upon their lives. If we assume that selective abortion is the only option when told that the foetus has a disability, then what are we saying about the lives of people with a disability’? Just as feminists abhor the idea of sex-selection because of the comment it makes about the relative worth of women in our society, so people with a disability feel uncomfortable with selective abortion. Petchesky (1984) however sees sex-selection as abhorrent, but views selection for Down’s syndrome as different. Why? Both involve selection on the basis of chromosomal make-up. One could say that on the one hand are people who will grow up discriminated against and disadvantaged in virtually every aspects oft their lives,! and on the other hand are people with Down’s syndrome.

The second of these assumptions can be roughly described as the notion of disability as burden. Saxton (1988) challenges the assumption that people with a disability are a burden on their families and the wider community. Without wishing to diminish the real difficulties that parents of a child with a disability face, to present the relationship as one of solely burden, ignores the contribution that family members with a disability can and do make to family life. Women have more to fear from a real or perceived threat of burden posed by a child with a disability, as they are typically the care givers of people with a disability. This applies not only to people born with a disability, but those who acquire a disability and those with the disabilities associated with old age. But this is reflection of the lack of services offered to the families of people with a disability and the way we continue to assign sex-roles, and as such is a situation which cannot be remedied by pre-natal testing.

To remedy this situation presumes that we as a society are willing to spend the money required to provide the needed resources. The costs of such resources are often used as rationale for advocating selective abortion. But underlying this argument is the assumption that people with a disability are unable to make any contribution to society, that we are necessarily unproductive members of society. But if our society is unwilling to provide equal opportunity in employment and education, then who do we blame for the non- productivity of people with a disability? It is worth noting that with double digit unemployment, people with a disability are not the only ‘non-productive’ members of society. Just as no-one would advocate the elimination of aboriginal people because extra resources have to be assigned to ensure their full and equal participation, so should we reject pre-natal testing as a way of saving money.

The most important point to make here is that genetically linked disability is only a part of disability, and pre-natal testing can only identify a small number of these disabilities. We will not be able to eliminate disability through pre-natal testing. Victims of car accidents will still face the prejudice that their lives are tragic. People with cerebral palsy will still be regarded as a burden. And an increasing amount of resources will need to be allocated to people with the disabilities of old age. Hubbard (1988) and Heumann (1990J believe that our resources would be better spent preventing disability by preventing poverty and war, and by ensuring good health and nutrition for all.

In the end where do these authors (and yours truly) stand on pre-natal testing? Saxton (1988) does not rule out the possibility, and implies that the decision is still one to be made by the individual parents, with the full facts in front of them. Fine and Asch (1988J are unequivocal. Women have the right to choose an abortion for whatever reason. Pre-natal testing has the potential to provide information and offer choice. People with a disability have a vested interest in the promotion of reproductive autonomy, and we cannot fight the stigma of disability by opposing women’s reproductive autonomy. At the same time, it is hoped that women will see that pre-natal testing merits a closer examination, both to their benefit and to the benefit of people with a disability.


References

Emery A. E. H. (1973) “Antenatal Diagnosis of Genetic Disease” Churchill Livingstone Edinburgh.

Fine M. and Asch A. (Eds) (1988) “Women with Disabilities-: Essays in Psychology, Culture and Politics” Temple University Press Philadelphia.

Frank 1 in S. and McNei1 M. (1988) “Reproductive futures: Recent Literature and Current feminist Debates on Reproductive Technologies” in Feminist Studies 14(3) (fall 1988) pp 545-560.

Heumann U.(1990) “How Women with Disabilities Can Advance into the Mainstream of Society” in Australian Disability Review 3-91 pp 65-90.

Hubbard R. “Eugenics: New Tools, Old Ideas” in Baruch E. H. et al (Eds) (1988) “Embryos, Ethics and Women’s’ Rights” The Haworth Press London.

Kenny M. (1986) “Abortion: The Who1e Story” Quartet Books London.

Luker K. (1984) “Abortion and the Po1itics of Motherhood” University of California Press Berkeley.

McDonnell K. (1984) “Not an Easy Choice: A feminist Re-Examines Abortion” South End Press Boston.

McDonough P. (1990) “Congenital Disability and Medical Research: The Development of Amniocentesis” in Women and I Health Vol 16(3/4) pp 137-153.

Meehan M. “More Children than They’re Worth? Children and Abortion” in Callahan S. and Callahan D. (Eds) (1984) “Abortion: Understanding Differences” Plenum Press London.

Newell C. (1990) “Lives of Inestimable Value: Life Worthy of Life” Disabled Peoples’ International (Australia) Fyshwick.

Petchesky R. P. (1984) “Abortion and Woman’s Choice” Northeasterm University Press.

Rapp R. “Moral Pioneers: Women, Men and Fetuses on a Frontier of Reproductive Technology” in Baruch E. H. et al (Eds) (1988) “Embryos, Ethics and Women’s Rights” The Haworth Press” New York.

Saxton M. “Prenatal Screening and Discriminatory Attitudes about Disability” in Baruch E. H. et al(Eds) (1988) “Embryos, Ethics and Women’s Rights” The Haworth Press New York.

Stone D’.(1991) “Disabled Girls Sterilised for No Reason'” The Sunday Age 4/8/91 p7.

Women’s Electoral Lobby (1984) National Policy Statement.