Thirty years ago, Ronald Reagan declared October Down Syndrome Awareness Month. Ever since, too many efforts at awareness have relied on pictures of people with Down syndrome being cute, accompanied by constant, upbeat assertions that they and their families are all very happy. Throughout October, adorable photos of people with Down syndrome and heartwarming, inspirational stories will stream across the Internet, all in the name of awareness. Shirts declare that extra chromosomes make you a hero. Other slogans and memes praise parents of children with Down syndrome. One T-shirt proclaims, “No frowns, just Downs!” In fact, sometimes my son, a 7-year-old with Down syndrome, frowns. So do his parents. In the Down syndrome community, we have worked so hard to promote the positives that too frequently we leave no space to discuss the struggles.

Inspiration porn

Down syndrome, also known as trisomy 21, is a common mutation in which early embryonic cell division results in an extra copy of a chromosome. It causes a wide range of developmental delays, from very mild to severe, though our understanding of the potential of people with the condition continues to evolve. The Down syndrome community, understandably, is deeply invested in spreading the relentlessly positive messages about the condition. In March, for World Down Syndrome Day, people were supposed to wear funny mismatched socks in service of awareness. A viral video showed people with Down syndrome dancing to Pharrell’s song “Happy.” Another, “Dear Future Mom,” offers heartwarming testimony from people with Down syndrome around the world to a hypothetical future mother of a Down syndrome child. At the end, they assure her, “People with Down syndrome can live a happy life.” Over 5 million people have watched it. I love this video. Happy lives are good, but is happy enough? What about inclusion, support, jobs, education, accessibility? How do we get past the low-hanging fruit of happy to do the hard work that our community needs? It’s true that cute can go viral in a way that serious and thoughtful does not. However, such images often generate superficial responses: Viewers see the pictures, say “Aww” and move on. They do not become more aware of the real difficulties faced by the disability community. There’s a term for this: “inspiration porn.” It describes images and stories in which the everyday actions of disabled people are repurposed to inspire people without disabilities. In the Down syndrome community, we have come to rely on “cuteness porn.” We teach the public that our kids are cute, but if that’s the end of the interaction, we have done nothing to build a more inclusive society. In fact, we may have erected new lines of exclusion by implying that only people with “cute” disabilities matter.

Please try again

Part of the sugarcoating stems from fear. Down syndrome can be detected prenatally. As technology changes, more women are being screened early in their pregnancies, resulting in fewer people with Down syndrome being born (although the precise causality is hard to track). In response, the Down syndrome community is trying to change the perception of what a diagnosis means. Both pro-abortion-rights and anti-abortion individuals — including parents, caregivers, self-advocates and medical professionals — have joined in a loose coalition they have dubbed pro-information. Pro-information materials aim to correct the incomplete information that leads many women to terminate their pregnancies after a diagnosis or screening. The solution is to make sure that women in such a situation get a complete picture before making an irrevocable decision. Pro-information laws have begun appearing in some states, though not without becoming tools for anti-abortion activism in some cases.

My son’s value as a person is not based on his cuteness. What matters is our shared humanity.

The pro-information message offers a well-developed and complex response that I support. Such thoroughness isn’t, however, how we generally respond when issues related to Down syndrome enter public discourse. Here’s an example: In mid-August, the scientist Richard Dawkins told his million Twitter followers what he would do in the case of a prenatal diagnosis. He tweeted, “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” He then tried to explain that his core principle in life was “a desire to increase the sum of happiness and reduce suffering.” He saw Down syndrome as a devastating disability that increased suffering. After Dawkins’ tweets, disability activists around the world leapt to social media, the press and the airwaves, sharing cute pictures of people with Down syndrome. And boy, are they cute — princesses and big grins (that’s Trig Palin) and so much more. The argument of all these posts and comments was this: If Dawkins wants to increase happiness, then look at our families; we’re happy, so Dawkins is wrong. In The New York Times, two scientists joined the fray. Jaime Edgin and Fabian Fernandez presented research that individuals with Down syndrome can experience both happiness and success, citing data from many studies. The picture of general stability and happiness of families in which a member has Down syndrome has been called the Down syndrome advantage. All of this is true. My son has Down syndrome, and at the end of every day, he walks into the kitchen, wraps his arms around his chest, then says and signs the word “love.” He calls us — “Mommy!” “Daddy!” “Ellie!” We all come, he leans on a parental shoulder, and the four of us embrace for an intense daily moment of connection. His love is the glue that holds our family together. We are intensely lucky and happy. He also happens to be supercute. But his value as a person is not based on his cuteness. What matters is our shared humanity.

‘Cute’ discriminates