At the close of Down Syndrome Awareness Month this October, just as “Down Syndrome Awareness Week” began in Canada, a new campaign from the Canadian Down Syndrome Society rolled out across the Internet. It featured young adults and children with Down syndrome dressed as a polar bear, a panda, a lion, a rhinoceros, and a sea turtle. The PSA says that people with Down syndrome should be “added to the endangered species list.” Instead of Down syndrome, the CDSS wants us to be aware of what they call “endangered syndrome.”
Let’s make one thing very clear: My son and I are the same species, both members of homo sapiens. He may have an extra chromosome in every cell in his body, but he’s not some rare animal threatened with extinction. Rather, he’s a full human, endowed with all the rights, all the potential, and all the complications as the rest of us. There are reasonable concerns about the widespread use of eugenic abortion following a prenatal screening for the condition. But my son is not an animal, and the pressures driving shifting perceptions of people with Down syndrome are not analogous to those causing extinctions within our biosphere. Cute, well-intentioned depictions of people with Down syndrome as charismatic megafauna, in fact, literally dehumanize them. And dehumanization is the enemy that we all have to fight if we want to support the present and future of people with Down syndrome.
In many countries, the vast majority of women who choose to have prenatal genetic screening, and receive a result indicating Down syndrome, select abortion. That’s been true for a long time, but accurate testing used to require invasive amniocentesis or similar procedures during the second trimester, so many women simply declined to undergo the process. Now, though, innovative new screening technology can locate fetal cells in the mother’s blood through a non-invasive blood draw. This new test is cheaper, safe, performable early in pregnancy, and rapidly becoming standard. In such a context, it’s not unreasonable for advocates to wonder whether Down syndrome will be eugenically eliminated in future generations.
I do not believe that Down syndrome will vanish from the Earth, but it’s certainly possible that the Down syndrome population will decrease rapidly among people who have access to modern medicine. It will code increasingly, therefore, for poverty, making it harder to generate the political will to provide services for people like my son.
Against such justified fears among people with Down syndrome and their families, a PSA geared around cute animal costumes is both inadequate and inappropriate. Adults with intellectual disabilities are already at risk of being infantilized throughout their lives, with emphasis on their cuteness serving to aestheticize their powerlessness, in the words of cultural critic Sianne Ngai. Instead, the goal has to be offering new parents better information and better, fully human, stories.
The pro-information campaign focuses on ensuring that medical professionals present parents with the most accurate information about people with Down syndrome. Groups like Lettercase, a non-profit associated with the University of Kentucky, provide online and print guides about Down syndrome that push back at longstanding extant stereotypes about people with Down syndrome as limited or fragile. Yes, Down syndrome is associated with specific medical risks, but the truth is that we have no idea what people like my son are really capable of, as new technologies and levels of social support continue to emerge. There’s some limited evidence that such campaigns are working. In Denmark, live births of babies with Down syndrome rose from one per year in 2014 and 2015 to 13 in 2017 (with caveats about the small size of the sample).
Landsforeningen Downs Syndrom, a Danish advocacy group, credits this rise to changes in how information is presented to pregnant people. “We saw a very one-sided focus on what the children would risk suffering from, such as heart issues,” a spokesman told the English-language Copenhagen Daily News, “but today there is a more nuanced approach and not least an update of the information that is provided for pregnant couples.”
Stories might be even more important, because we can consume them outside the medicalized context of a specific pregnancy and test.
The reality show Born This Way from A&E, for example, focuses on the lives of six adults with Down syndrome, and on their families and communities. It’s now in its fifth season, and while I’m still no fan of reality television as a genre, I’ve long been impressed by the way the show confronts issues of disability identity, race, housing, work, and even sex. My son isn’t interested in the show at all, but I still watch it from time to time, thinking about my hopes for his future filled with meaningful adult relationships (friendly, sexual, and professional) and autonomy.
No PSA is going to achieve the precision of a detailed medical manual or the depth of a five-season television show. But it’s still possible to promote the agency and value of a life with Down syndrome in a short video format. A few years ago, an Argentinian teenage girl with Down syndrome made a short film about a teenage boy with Down syndrome. Looking surly and tired, he bids goodbye to his mom, then grins as she drives away. He changes his school clothes for a Ramones shirt, takes the bus, meet friends by the park, flirts with a girl, enjoys a band, then takes the subway back to school. He puts on his school uniform and his surly expression once more as his mom arrives to pick him up.
I don’t want either of my kids to cut school, but I do want them to dream of rebellion and self-expression. I’m going to buy my son a Ramones T-shirt (or maybe a Flogging Molly one) long before I look for a polar bear costume. A punk rock T-shirt will do more good for awareness too.
