Introducing: The Beautiful Unwanted

In the blog post below, Chris Kaposy introduces his new book, The Beautiful Unwanted: Down Syndrome in Myth, Memoir, and Bioethics. In The Beautiful Unwanted, Kaposy reflects on parenting his son with Down syndrome in the midst of a supposed disappearance of people with this condition. Writing from a pro-choice, disability-positive perspective, Kaposy presents decades-old bioethical controversies, revealing the prehistory that has shaped current attitudes toward intellectual disability.

This commentary has been previously posted on the Impact Ethics blog.

Last year, Fall semester, my students and I were reading Larissa MacFarquhar’s book Strangers Drowning, which is about people who are fanatically altruistic. Our graduate-level class in health ethics was studying moral idealism, and supererogatory actions. MacFarquhar’s book tells the story (among others) of Murlidhar Amte, otherwise known as ‘Baba’ – a man whose altruism was near unbelievable, almost to the point of being cartoonish satire.

Baba founded a leper colony in India which eventually grew into a whole community for people with and without leprosy. The early days of the colony involved incredible hardship. The land he was given was barren wilderness populated by rats, snakes, and poisonous scorpions. The camp flooded during a monsoon. My students were impressed by the story of Baba’s life as an example of extreme sacrifice for the good of others. Baba, however, would not have accepted this characterization. Baba took on this work, he said, not out of selfless motives, but for his “own reasons.” He wanted to prove something to himself, to overcome something in his own character.

In 2021 a woman in the UK named Heidi Crowter, who has Down syndrome, sued the UK government over its abortion law. The law permits abortion after twenty-four weeks of gestation when the fetus is diagnosed with a disabling condition. In late 2022, the Appeals Court ruled against Crowter. Among the facts cited in the case, Lord Justice Underhill mentioned 2018 statistics on Down syndrome abortions and live births. He noted that “in 2018, there were 722 live births [of infants with Down syndrome] and 799 terminations” (paragraph 20). These numbers were surprising to me. Previous statistics usually show an abortion rate around 90% in the UK when there is a prenatal diagnosis of Down syndrome. (Canada doesn’t seem to collect such data).

The 2018 numbers shared by Lord Justice Underhill suggest that about 47% of these pregnancies result in live births and 53% end in terminations. So, I went looking for further confirmation. Confusingly, the UK Down Syndrome Medical Interest Group (a professional group of pediatricians) cites a 2018 termination rate of 85.2% after a prenatal diagnosis of Down syndrome – roughly in line with previous stats.

The 722 live births might include many born after a refusal of prenatal testing. In the Crowter ruling, Justice Underhill also stated that “44% of women who were offered screening opted out of it and/or of being given a diagnosis of Down’s” (paragraph 20). The 90% stat from previous studies refers to what happens after a diagnosis, so this would not include pregnancies where testing is refused in the first place.

My son Aaron has Down syndrome. He is now fourteen years old. For Halloween last month he went to school as a pirate. I am solidly prochoice, but I am also hopeful that, over time, more people will choose to parent children with Down syndrome, rather than terminating. So, Lord Justice Underhill’s statements were encouraging. They suggested parity in the UK between births and terminations. This feeling of encouragement dissipated, however, when I realized that there was probably no significant change, in reality. But maybe I should not resign my optimism. The 44% of pregnant individuals in the UK who refuse prenatal screening or diagnostic testing is significant, and is not often cited. A refusal of prenatal testing is one way of welcoming the possibility of having a child with a disability. When these gestures of welcome are included in the statistics, the situation does not seem as dire.

Statistics are not always certain. This is not to say that governments get the counting wrong. But statistics are not necessarily indications of a community’s values, capacities, or confidence.

My new book (published in October) The Beautiful Unwanted is about the predicted disappearance of people with Down syndrome from our communities. In the book I trace out some of the genealogy of the current state of reproductive decision-making – into recent history, and further back into myth. Our decisions are influenced, in part, by sedimented layers of cultural messaging about intellectual disability. These messages about Down syndrome, in particular, can be found in a whole prehistory of disappearance. This prehistory has played out in bioethical controversies. Baby Doe, who died because he was refused life-saving surgery, is an example. His death in 1982 persists in living memory.

I am no Baba, and writing a book is no act of moral heroism. I do, however, appreciate the insight that we ought to have our own reasons for the things that we do – even when our goals are idealistic. I am not convinced by the prediction of the disappearance of Down syndrome. Regardless of the influence of the past, the future is another country over which we have some control. We can begin to tell new and different stories about Down syndrome. I wrote The Beautiful Unwanted to reassure myself that the future will be hospitable for my son Aaron, and to show that this imperfect world can disclose its beauty through a child.

Chris Kaposy is an associate professor at the Memorial University Centre for Bioethics, and an editor of the Impact Ethics blog. On Mastodon: @ChrisKaposy@mindly.social