Disability and the right to life

“if able-bodied society were to accept that those with disabilities are equal human beings with rights, they would also have to abandon the notion that screening and abortion are benefits to society, and that the earlier a handicapped person is killed off the better for all concerned.” (Alison Davis 1987, p. 287)

the decision to abort a fetus may well be grounded in the insight that the forms of social and economic support needed to make that life livable are lacking.” (Judith Butler 2009, p 22)

Elsewhere Butler speaks of the notion of ‘grievability’ as the measure of a life lived or not:

Without grievability, there is no life, or, rather, there is something living that is other than life… Grievability precedes and makes possible the apprehension of the living being as living, exposed to non-life from the start” (2009, p 15).

In other words, if a life is not worth grieving over, it is not worth living.

On the other hand, it has been argued that women who choose to abort on the grounds of fetal abnormality are not necessarily discriminating against disability but judging their own capacity for coping, and as such their decisions should not be considered as a eugenics issue but one of empowerment: a means for women to gain control over their lives and futures (Furedi 1998). Although the idea of eugenics as a means of improving the human race by sterilization and segregation has generally fallen out of favour since the Nazi extermination camps were liberated, abortion is considered socially acceptable in the UK when it has been medically determined that the unborn child has a high probability of being born with serious impairment (Barnes 1991, p 21).

I strongly believe that it is not possible to have a positive attitude towards a minority group while one is simultaneously directly involved in their deliberate destruction” (Davis 1999, unpaged).

In some disability circles, the testing of babies in the womb for possible disabling conditions is just a new kind of eugenics – effectively destroying the human before it has the chance to become a burden on society. Pre-natal screening is couched in terms like ‘safeguards’ that ‘ensure’ the baby is ‘healthy’ but to some disabled people this reads more like detecting abnormalities in order to abort a potentially disabled child, reinforcing the impression among them that “we are tolerated only on sufferance, and that society would really prefer us to be quietly eliminated” (Davis 1999, unpaged). Despite the efforts of activists, Davis claims, society’s opinions of disabled people can be read clearly in words such as “defective”, “malformed”, “abnormal” that are used to describe babies in the womb with potential disabilities: “Either I am a “defective adult” or a “person with a disability”” (ibid, unpaged). Davis also notes that some disabled children are denied surgical operations on the grounds of their disabilities, while the screening technique itself (amniocentesis) causes some children who had previously been healthy to be born with disabilities.

those of us with screenable conditions represent living adult foetuses that didn’t get aborted” (Saxton 1998, 110)

One of the main problems for pregnant mothers is access to information – there tends to be little or no accurate information available, while the counseling offered by medical workers may be biased or prejudiced. The idea that selective abortion can improve quality of life is maintained by physicians who try and dissuade mothers from giving birth to disabled children on the grounds that their lives will necessarily become difficult and burdensome. The absurdity of this notion is exposed by Ruth Hubbard, who hypothesises that if a test to determine skin colour were developed, a child from mixed parentage could be aborted on the grounds that “it is difficult to grow up in black America” (1990, p 93). She claims that the ‘quality of life’ argument is akin to the ‘lives not worth living‘ rationale of the Third Reich and, paraphrasing Hannah Arendt, declares that such reasoning presumes the “right to determine who should and who should not inhabit the world.” According to Butler’s analysis of Arendt’s thought (2012), we have the right to choose how and where to live, and even with whom, in a localized sense, but to choose who we cohabit the earth with would be tantamount to deciding which part of humanity should live and which should die, and as such a genocidal practice: “we are wrong to think freedom in any ethical sense is ever compatible with the freedom to commit genocide” (2012, p 143). Though we are obliged to live with those we may prefer not to or feel no social affinity for, we are nonetheless “obligated to preserve those lives and the open-ended plurality that is the global population” (ibid, p 144).

Marsha Saxton (1998) also points out that such reasoning is based on unquestioned discriminatory assumptions that a disabled person’s quality of life is by definition inferior, while the experience of bringing up a disabled child is a completely negative one. In fact, she contends, parents of disabled children report that raising a disabled child can be a joyful and satisfactory experience, while discriminatory attitudes that come about as a result of segregation present more challenges than the provision of care. The opinions and advice of medical workers are also biased, since physicians generally only have contact with disabled people in medical contexts – when there is something wrong with their health – rather than in social contexts with their friends and families.

some of us are “too flawed” in our very DNA to exist; we are unworthy of being born” (Saxton 1998, 115)

Selective abortion can be seen as another symptom of consumerist society, where the ‘perfect child’ is marketed as just another commodity that can be tailor-made using quality control technology while generating massive income for the biotechnology business (ibid).

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