It’s also About People with Down Syndrome

Newsreel Asia Insight #16
Oct. 17, 2023

The Oct. 16 ruling on abortion by a three-judge bench of the Supreme Court of India involves a complex debate that extends beyond women’s reproductive rights and foetal right to life, encompassing disability rights as well.

The court declined to allow a 27-year-old woman to terminate her 26-week pregnancy, citing that existing laws permit abortion beyond 24 weeks only in the case of foetal abnormalities or when the life of the pregnant woman is at risk, as reported by ThePrint.

The bench, led by Chief Justice D.Y. Chandrachud, reached its decision after reviewing a comprehensive report by a nine-member committee of medical experts from the All India Institute of Medical Sciences. The report said both the woman and the baby “can be managed well during pregnancy and postpartum.”

If the medical experts had discovered a foetal abnormality, such as Down syndrome, the judgment might have favoured abortion—not based on the question of the woman’s bodily autonomy, but rather on medical grounds.

While the legal dimensions of the case may appear straightforward, the ethical implications are more complex. Specifically, the debate surrounding abortion in cases of a Down syndrome diagnosis, or other disabilities, presents compelling arguments. These challenge societal perspectives on both reproductive rights and the rights of disabled individuals.

Down syndrome is a genetic disorder caused by the presence of an extra 21st chromosome. This condition affects physical and cognitive development, leading to distinct facial features, intellectual disabilities, and potential medical issues such as heart defects.

In India, the disorder is far from rare, with over 30,000 to 35,000 children born with it annually, the highest number in the world, according to The Economic Times.

India’s primary legislation governing abortion, Medical Termination of Pregnancy (MTP) Act of 1971, which was amended in 2021, allows for the abortion of a foetus with serious abnormalities, which can include Down syndrome, up to 24 weeks of gestation. Beyond 24 weeks, abortion for foetal abnormalities is generally not permitted under the law unless it poses a risk to the life of the pregnant woman.

To determine what could be considered a “substantial foetal abnormality,” Justice Prathiba M. Singh of the Delhi High Court in December 2022 referred to a report by the Royal College of Obstetricians and Gynaecologists in the United Kingdom, as reported by Livelaw. That report outlines factors to assess the severity of foetal abnormality, such as potential for effective treatment, the child’s likely self-awareness and ability to communicate, expected suffering and the capability to live independently as an adult.

Currently, there are limited prenatal tests in the West for diagnosing Autism Spectrum Disorders (ASD). However, as this technology advances, ASD could potentially fall under the category of abnormalities that qualify for abortion.

In England, Wales and Scotland, abortion is permitted until birth if the foetus is diagnosed with a disability, which includes Down syndrome. However, many Britons oppose this practice.

In November 2022, a woman with Down syndrome, named Heidi Crowter, lost her appeal to stop abortion of foetus diagnosed with this condition, cleft lip or club foot in-utero under the disability clause in the U.K.’s abortion laws, which she said were discriminatory and stigmatised people with disabilities.

Crowter responded by saying, “It makes me feel that I shouldn’t be here. That I should be extinct. I know that’s not true, but that’s how it makes me feel,” as reported by The Guardian. “This tells me that I am not valued and of much less value than a person without Down’s syndrome. I am angry that the judges say that my feelings don’t matter. That makes me feel that I am not as valuable as a person without Down’s syndrome.”

The current discourse in India, though not widely being discussed in public, also makes a flawed assumption: aborting after a Down syndrome diagnosis is the natural and obvious choice. This viewpoint contravenes principles of non-discrimination and equal dignity for all, thereby undermining the inherent worth of individuals living with Down syndrome.

In India, prenatal tests for diagnosing Down syndrome are not universally accessible, creating an inequity from the start. When affluent parents, who have the resources to raise a child with Down syndrome, opt for abortion, it further marginalises and stigmatises those already living with the condition. This choice inadvertently sends a message about the perceived worth of individuals with Down syndrome, exacerbating existing social prejudices.

Raising a child with Down syndrome in India poses significant challenges, largely due to a non-inclusive environment in schools and the broader society. The solution is not to prevent these children from being born. Rather, the onus lies with the government and civil society groups to foster an inclusive world that accommodates their unique needs.

According to medical science, early intervention and therapies can improve quality of life. Despite challenges, many individuals with Down syndrome lead fulfilling lives, contributing to society in various ways. 

Sujeet Desai, born with Down syndrome, is a skilled musician proficient in seven instruments: Bb and bass clarinet, alto saxophone, violin, piano, trumpet and drums. Madeline Stuart, an Australian model with Down syndrome, has graced the runways of New York Fashion Week and has also participated in fashion events in Paris, London, Dubai, Russia, and at Mercedes Benz Fashion Week in China, among others. Christopher Joseph Burke, an American actor, gained widespread recognition for his role as Charles “Corky” Thatcher on the TV show “Life Goes On.”

Moreover, adults with Down syndrome have the right to vote, yet their right to be born is not safeguarded.

So where should society delineate the boundary between a woman’s agency and the acknowledgment of the equal dignity afforded to individuals with Down syndrome and disabilities? And how does this quandary intersect with the pervasive issue of female foeticide in the country? Can sex-selective abortion be seen as a matter of a woman’s agency?