Screening disability

The dilemma when a pregnant woman seeks to abort a foetus with a detected disability

Activists worry that pre-natal imaging and testing are leading to the elimination of disabled people.

On February 28, 2017, a division bench of the Supreme Court denied a woman permission to terminate a 26-week pregnancy after medical tests revealed that the foetus would be born with Down syndrome. This decision comes as one of several reported recently where late-term abortions have sought the nod of the judiciary.

The Medical Termination of Pregnancy Act is often said to be one of the more progressive statutes relating to women’s reproductive rights, globally. While the law allows medical terminations of any pregnancy up to 12 weeks, beyond this and up to 20 weeks, terminations are allowed for two reasons: a risk to the life of the pregnant woman or of grave injury physical or mental health, or there being a substantial risk that if the child were born, it would suffer from such physical or mental abnormalities as to be seriously handicapped.

The Act does not allow for a registered medical practitioner to terminate a pregnancy beyond 20 weeks gestational age unless there is a risk to the life of the mother, and so the courts are approached for permission for such procedures to take place. The Supreme Court, in this case, appears to have relied on the fact that delivering a child with Down syndrome does not pose any more risk to the mother than delivering a child without Down syndrome. What seems to have attracted attention was that while delivering the judgement, Justice SA Bobde reportedly observed that “everybody knows that children with Down Syndrome are undoubtedly less intelligent, but they are fine people… we don’t think we are going to allow the termination of pregnancy. We have a life in our hands.”

Justice Bobde, perhaps unwittingly, echoed the viewpoints of disability rights organisations around the world, particularly those representing persons with Down syndrome and conditions like spina bifida, which are now detectable well within the “safe” period for termination of pregnancies. They have voiced concerns that the vast improvements in imaging and testing are leading to their elimination from the diversity of humankind.

Screening out the disabled

In the United Kingdom, current imaging has resulted in a 90% termination rate of foetuses testing positive for Down syndrome. Efforts to step up such testing recently brought persons with Down Syndrome and their families onto the streets to protest against the government “screening them out”. Autistic persons have spoken out against global NGOs like Autism Speaks for raising for funding research focused on identifying genetic markers for autism, presumably so that autism can be prevented by way of prenatal testing as well.

Disability rights activists are clear that measures that prevent impairments, for example, promotion of folic acid supplements to expectant persons, vaccines, nutritional supplementation etc. are not problematic. However, elimination of persons who have these impairments most certainly falls foul of the human rights entitled to persons with disabilities.

The Committee on the Rights of the Child, in 1997, while discussing the rights of children with disabilities stated:

“It was of course vitally important to work towards the creation of a safer world for children in which the risks of impairment and harm were minimised, but the solution was not through the denial of life itself as a preventive strategy. Rather, we must celebrate diversity and learn to celebrate the birth of every child, with or without disability.”

Disability rights activists, particularly in the United States, are mindful of the potential their cause has to curbing women’s reproductive rights, particularly in the present political scenario. This discomfort is reflected in the Convention of the Rights of People with Disabilities itself.The discussions behind drafting of Article 10 on the Right to Life reveal that though many interest groups and states advocated for the specific bar on terminations of pregnancies on the grounds of disability, the text that received consensus was silent on the same. As seen from the concluding observations of the convention’s committee relating to the implementation of the Convention in Spain, termination of pregnancies on the grounds of disability when there was a general right to terminate a pregnancy was not per se violative of the Convention, but States that allowed for terminations only on the grounds of disability were violating the convention as the protection offered to the foetus was then not “on an equal basis with others”.

Informed choices about abortion

In India, where prenatal determination of sex and consequent termination of a pregnancy based on sex is prohibited, the door seems already ajar to argue that pregnant people have the right to terminate any pregnancy, but not a particular pregnancy on the grounds of the sex of the foetus. Interestingly, the National Commission for Women in India has opined that there should be no gestational age cap to terminate a pregnancy for certain cases including those in which there was a “substantial risk that if the child were born it would suffer physical or mental abnormalities”.

The draft amendment to the Medical Termination of Pregnancy Act, currently pending in Parliament, does not accept this viewpoint and retains the exception to the gestational age cap only in cases where it is immediately necessary to save the life of the pregnant woman.

At the very least, pregnant persons should be given the right to make an informed choice regarding continuation of their pregnancies. The spectrum of “physical or mental abnormalities” is a vast one and encompasses conditions that may cause some physical or learning impairment to those that practically guarantee the death of the child on the delivery table. These abnormalities may be caught in the recommended scans. The nuchal scan at 12 weeks that detects fluid build-up at the back of the foetus’ neck indicates chances that the baby could have Down syndrome. The anomaly scan at 20 weeks is designed to detect conditions from cleft palate, short limbs, spina bifida, anencephaly and missing or defective organs.

Obviously, forcing expectant parents to undergo a full term pregnancy to a certain tragic outcome is certainly a cruel human rights violation, but grouping this entire range of cases together by law stacks the odds against the disabled. The draft Medical Termination of Pregnancy Act merits reconsideration in light of India’s obligations under the Convention of the Rights of People with Disabilities.

New understanding of disability

Research has shown that medical professionals often make highly subjective decisions in advising termination of pregnancies. Activists in India have demonstrated that medical professionals currently do not have the training for a rights-based approach to disability. Diagnoses like Down syndrome and spina bifida, after all, carry no clarity as regards the kind of support the child requires. All human beings, from newborns to the elderly require some degree of support in their day to day activities. Persons with disabilities merely require a different kind of support than others.

With the current 20-week limit, expectant parents are often forced into time bound decisions immediately after their second trimester scans, with insufficient information regarding what having a child with a particular impairment actually involves. They are instead assured that the child would have a poor quality of life, reinforcing accepted notions of eugenics.

Sustained efforts of the disability sector have resulted in technological advancements, legislation, social protection schemes and other inclusive measures to ensure full participation of disabled people in public life. Attitudinal barriers remain, encouraged by the isolation of persons with disabilities in special schools, sheltered workshops, and long-term homes away from the community. Perhaps, we would welcome a child with a disability into our lives if we had grown up with classmates with disabilities, or seen them as mainstream characters in films, or worked alongside them, or at the very least had access to speak to them to ask if they led lives worth living. Their answers could lead to a change in the perceptions of many.

The writer is a lawyer with the Equals Centre for Promotion of Social Justice.

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