Friday, March 21, 2014

World Down Syndrome Day - The Long Game. Or why cute and happy is not enough.

Today is World Down Syndrome Day, chosen because 3/21 reflects the three 21st chromosomes that mark the genetic condition Trisomy-21, also known as Down syndrome. It's a day about awareness and you will, if you're lucky, see lots and lots of cute pictures of kids and adults with Down syndrome. Here's a cute picture of my son hugging a stuffed alligator at the zoo. I love cute pictures of kids with Down syndrome.

Cute, right? Do you feel more aware? 

You might see people wearing funny mismatched socks, not, I think, because people with DS are funny and mismatched (though I feel there's an implication here I'm not comfortable with) but as a conversation starter.

I am wearing black socks. They are not funny. They do match. Even more unlikely, they don't have any holes in them.

When it comes to the cutesy and commercialized elements of the Down syndrome internet, I am a curmudgeon.

My basic argument is this. Cute pictures are nice. You know what, my son IS cute. Most kids are cute. Cute is what kids do. But they render our children as objects to coo over, and the labels of cute and sweet persist past the delicate phases of toddlerhood and infancy, defining even the perceptions of teenagers and adults. What about the moments in which humans, real, complex, three-dimensional humans, are not so cute? What about pain? Violence? Sorrow? Poverty? Rape? Murder? My fear is that because there's so much emphasis on cute and on children, that cute makes it hard for other stories to emerge.

Cute is the low-hanging fruit. If we in the community employ it, we must do so as a tool to open the door and start the conversation, not as an end to itself. Otherwise, cute just becomes "sweetness porn." It makes you feel good, but it doesn't do anything - except perhaps shut out the non-cute. At best, it promotes a nice feeling of passive awareness, because it's easy for people to be aware of something cute.

But as I've said before, I'm playing the long game. I want inclusion (and not same-ness). I want resources. I want justice. I want to change perceptions.

Disability scholars use the phrase "inspiration porn" to describe ways in which people with disabilities are leveraged to inspire others, losing their own agency, losing their wholeness as a complex person, and often sending messages that if you aren't inspiring as a disabled person, you're letting the side down. I argue that our focus on cute, sweet, and happy in the Down syndrome community does the same thing.

And so I write about death and rape, I write about violence and enforced compliance, and I question the utility of things that make me feel good about people with Down syndrome and the world. I question the value of letting kids with DS score uncontested touchdowns, even if it makes them happy. I question the significance of voting kids with DS as homecoming kings and queens - yes, it makes everyone happy and helps the typical kids feel good about themselves, but tomorrow are they going to go out and advocate for reinstating respite care for struggling parents of kids with disabilities? Or is it just patting themselves on the back for showing how great they are. I am a cynic; a curmudgeon; a writer about difficult topics - and I grateful to CNN and others for letting me have that surly voice on a national stage.

Again, if you post lots of cute pics and blog or publish heartwarming stories, thank you. You are doing a lot for awareness.  I believe in our community and am so privileged to be a part of it. I believe we are all trying our best and trying to make a difference. And again, cute opens the door. But it just can't stop with that.

Here's one example.

Below is an amazingly heartwarming video called #DearFutureMom. It features people with DS from around the world describing life with Down syndrome, trying to ease her fears. Frankly, it makes me a little teary at the end when they talk about love and hug their parents. Over 2.6 million people have watched it at the time of this posting.

The moral at the end: "People with Down syndrome can live a Happy Life."

And they can. 

But happiness isn't enough for me. There's so much more work we have to do.

Happy World Down Syndrome Day.