This appeared in http://america.aljazeera.com/opinions/2014/10/down-s-behind-thesmiles.html on October 15. I'll let it stand as my own post, too.
How the Down community sugarcoats difficult realities about the condition
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.
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.
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.
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.
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
There’s another problem: Not everyone in the Down syndrome community
is happy. I know people fighting cancer, parents fighting school
districts, fighting to find respite care or fighting to locate meaningful work for adults with Down syndrome.
Moreover, the Down syndrome advantage, taken too far, drives a wedge between groups of people with disabilities rather than promoting solidarity. There are people with disabilities who are not, by the standards of our society, cute or happy. There are people whose disabilities make life very hard for them, their families and their communities. Disability can increase suffering. Disability can limit happiness. Disability can cause stress and pain. If we accept the premise that Down syndrome should be valued because people with Down syndrome are happy, then does that mean everyone who isn’t happy lacks value?
The Stanford art historian Sianne Ngai is an expert on the meaning of cuteness. She writes, “Cuteness is a way of aestheticizing powerlessness … Cute objects — formally simple or noncomplex and deeply associated with the infantile, the feminine, and the unthreatening — get even cuter when perceived as injured or disabled.” The emphasis on cute, sweet, angelic and similar flat positive stereotypes does two things. First, it renders people with Down syndrome less than fully human. Pets are cute; humans are complicated. Our fear of eugenic abortion has led the community to adopt a mode of representation that erases those human complexities.
Second, if abortion is the problem, then cute isn’t even the answer for that. If we assert that life with Down syndrome is valuable because our kids are cute and our families are happy, even if that’s always true, then all we do is push the eugenic line down the disability hierarchy.
As a parent of a boy with Down syndrome, I have committed to the long game, not the low-hanging fruit of cute and happy. My goal is not to save Down syndrome but to change the way we think about and understand disability, normality and diversity.
Step one: See the whole person, not just the cute face.
Moreover, the Down syndrome advantage, taken too far, drives a wedge between groups of people with disabilities rather than promoting solidarity. There are people with disabilities who are not, by the standards of our society, cute or happy. There are people whose disabilities make life very hard for them, their families and their communities. Disability can increase suffering. Disability can limit happiness. Disability can cause stress and pain. If we accept the premise that Down syndrome should be valued because people with Down syndrome are happy, then does that mean everyone who isn’t happy lacks value?
The Stanford art historian Sianne Ngai is an expert on the meaning of cuteness. She writes, “Cuteness is a way of aestheticizing powerlessness … Cute objects — formally simple or noncomplex and deeply associated with the infantile, the feminine, and the unthreatening — get even cuter when perceived as injured or disabled.” The emphasis on cute, sweet, angelic and similar flat positive stereotypes does two things. First, it renders people with Down syndrome less than fully human. Pets are cute; humans are complicated. Our fear of eugenic abortion has led the community to adopt a mode of representation that erases those human complexities.
Second, if abortion is the problem, then cute isn’t even the answer for that. If we assert that life with Down syndrome is valuable because our kids are cute and our families are happy, even if that’s always true, then all we do is push the eugenic line down the disability hierarchy.
As a parent of a boy with Down syndrome, I have committed to the long game, not the low-hanging fruit of cute and happy. My goal is not to save Down syndrome but to change the way we think about and understand disability, normality and diversity.
Step one: See the whole person, not just the cute face.
But I've gotta have a photo of Sofia:
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