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.

36 comments:

Extranjera said...

I definitely like where you're going with this, as I told you on Twitter. And I do believe that a shift is imminent, that more curmudgeons like you and I are going to come out of the woodwork and challenge the "niceness" to play the long game. Really, I do.

I'd like to delve more into something that you touch on briefly but don't seem to link to the cute narrative directly, namely the exclusionary power of a specific kind of "marketing" of Down syndrome. As you probably have gathered I'm not as easy on cute as you are, I struggle with questions of ownership, permission, autonomy, public vs private, audience, agency, and voice when it comes to a few of these photo campaigns. I also very much struggle with the way we, the "community" (I'm not even going to pretend I'm a part of it ;-) ), quantify as measure the "results" of our incessant marketing and advertising. It seems to me that we're more often than not fumbling in the dark and going by "If I'd seen these photos when I was pregnant with my child/ first had my baby I'd felt so much better" and completely forget that we, as parents, can never again be objective about these types of efforts.

Thoughts?

David Perry said...

Well, I'm not as easy on cute as in my own head as I am when writing here. I try to be generous. I try not to call specific bloggers out. Moreover, my facebook feed IS filled with parents posting cute pics and I love them - they genuinely make me smile.

But there's competition among bloggers and organizations. Noah's Dad has something like 45,000 facebook likes. David M. Perry has 400. If I posted a cute pic of Nico every day, I bet there would be more.

What's really making me cranky today are the people who speak for their children, who assume that the child's voice would say the same thing as the adult would want them to say - it crushes agency and makes them just an object reflecting our beliefs onto the world.

David Perry said...

My second thought here is how much this is all shaped by the abortion issue. There's such an attempt to be HAPPY HAPPY CUTE CUTE in order to show prospective parents that life with DS is grand and so don't have an abortion. And I also don't want people to abort based on a pre-natal diagnosis of DS, I just wonder if we limit the chance to really effect change with all this happy happy.

MSN said...

Hallelujah.

Extranjera said...

Yes. Cute photos seem to be a big draw. I think for many not in the community sharing a cute photo with a few words on it is a badge of tolerance. It's reassures them and shows others what that person's really about. But how often does reality measure up?

Another thing I'm extremely concerned about, other than, as you say also, our having gotten so involved in the abortion debate that it seems often advocacy = saving fetuses with Ds, is the divide between the creators and supporters of these campaigns and those who work for inclusion. Never have I met with so much resistance to my rhetoric for inclusion for all than amongst those who insist on this nice approach. I've actually been called out for being exclusionary for not supporting those who choose to favor self-contained classrooms. Maybe it's just me, but the connection seems to be there, and sort of makes sense when you really think about it, and it's one that's keeping me up at night.

Cate said...

I totally agree.

One reason I really like the Happy video that's going around (http://www.youtube.com/watch?v=aCJQAm_uKyg) is that it does include a range of ages. There's at least one much older woman, being pushed in a wheelchair (as well as one younger woman pushing her own wheelchair, and a bunch of teens and adults, including some who seem to be couples dancing together.) There are some cute kids and babies too, sure, but they are definitely not the focus.)

Mark Leach said...

You're making me self-conscious about my post about the same video, then the news segment with my daughter (where she was cute, b/c, on camera, she turns that on), and then my profile pic again of my cute daughter. ;)

I'm wondering what imagery would/should the DS employ that is analogous to imagery of injustice from the Civil Rights movement?

Amy Dietrich Hernandez said...

I am all for cute as long as we back it up with more. I definitely do, but some don't. Show me your kid is cute, but also show me why we should care about his future. That's what I try to do.

David Perry said...

More later, but you will never be accused of plucking only low hanging fruit!

Extranjera said...

(I should probably just be blogging this instead) Another thought that keeps rattling in my head is that we don't really seem to be making a distinction between 'cute pictures of my child with Down syndrome on my own social media' and 'cute photos of children with Down syndrome to be distributed and shared on social media by whoever is willing to distribute and share'. I think this is when a lot of issues relating to a certain kind of advocacy surface for me.

David Perry said...

Yes, blog! :) But also, I work out my ideas in chats and comment sections all the time, then try to cohere them into a blog post or op-ed. So post away!

David Perry said...

I really love that video, and was 100% with it until the final card screened saying it's all about a happy life. I want that. But I want more.

David Perry said...

Well, Mark, that's in part why I have been writing about these darker things. But I also love the Jenny Hatch story. Now there's a narrative worth emphasizing everywhere.

Lisa Amor Petrov said...

"inspiration porn" --wow, that was a new idea for me, I totally get it. As for your problem with "empty happy" (I know that's an oversimplification, but...) that is a problem I see in our culture in general. Everyone is so trained to expect that "happy ending" that we're too often unable to deal with difficult, less attractive emotions honestly and in a straightforward manner.

While everyone is entitled to happiness, and can/should have access to what makes for a happy life, we are all also entitled to anger, frustration, sadness, etc. So, I agree with you--it can't all be heart-warming smiles if we're going to be real about things and deal with the real challenges. On the other hand, it can't all be overly serious and too dramatic either--then people turn off, because they need a dose of "happy" to draw them in. Balance...

David Perry said...

Yeah, it's a great phrase. It works for poverty, race, gender, ability, etc. Any group whose stories become leveraged by a dominant group to make the dominant group feel better - without engaging the underlying causes/problems.

NCmomof3gifts said...

Thank you for this thoughtful blog post. I do not have a child with DS but I do have a child with severe autism. I feel this way often when during Autism Awareness Day, we see the multiple stories of savants and kids with amazing talents. This is a minority and I think it gives people the wrong idea about autism. I love to see inspiring stories of au kids doing amazing things or overcoming the odds and going to college or playing the piano by ear, but that is just not reality for so many. Some kids with autism also have an intellectual disability- they matter too. They will need adult services, job coaching, recreational activities, etc. I think sometimes the "inspiration porn" serves to let the public off the hook, it tells them "we're all good over here" when actually we are not all good over here.

jennielately said...

I agree with you 100%. I took flak for having a similar opinion as yours. I refused to allow my son to wear mismatched socks for the simple fact that he would refuse to wear them anyhow. They're mismatched and he knows it.

The perception of others to have lowered expectations because of his disability are unacceptable to me and I need not feed into them. Will he ever be president of the United States? Probably not, but he will be better than the guy who sweeps the parking lot at McDonalds.

I take photo's when he's having a typical kiddo temper tantrum to prove that he's not always happy. I can prove that he's not always sweet and earlier today, he lied to me about eating the ice cream I told him earlier that he could not have until after lunch. The proof was on his face and he threw away the empty container.

They are human beings. Not objects, not toys and they exist when you're not around.

I get nothing from the stories where a person with down syndrome was allowed to make a play in a football game, was made homecomming queen or whatever. It's nice and I am sure that they had fun, but I question everything in between. I will not pass out a gold star because you went out of your way to tell me how cute my son is. I know he's cute. Damn right he is, he's my son, why wouldn't he be cute?

In my little portion of the world, aside from visits with specialists and doing very few things different, Down Syndrome is not a big deal. I don't make it a big deal.

There has been a time where I would steer away from posting a lot of kiddo pics on my Facebook unless we went and did something special ( like the zoo or to feed ducks etc ) because I HATE the sympathy and insincerity I often feel from people when they react to his pictures. He's cute but he's not 250 likes cute as opposed to anything else I share.

I want him to be seen as a person. An equal. Not the same-ness, but a human being all the same. If that makes any sense.
I blog sometimes about Down Syndrome, but it's always been about guarding families against the negativity. That this isn't the end of the world and everything will be okay. I like to think that I am real and I tell the truth about what our kids are really like and not what some production or meme says that they are.

David Perry said...

Thanks for the comment, and yes, this exactly.

David Perry said...

Thank you for the comment, and yeah, "not 250 likes" cute ... Inclusion, not same-ness, is one of my mantras. Seems we're on similar pages.

Jennifer Koczan said...

Just to add to the "low hanging fruit of cute". When people get the impression that are children are emotionally one sided, they react negatively when they see a special needs person ( in general ) get mad. I think that is how the idea that some of our children are aggressive etc is because of the whole "sweet and kind" label. People are wired to believe that there is not real human emotion attached to them as people. Period. How dare they be angry, sad or anything other than happy and sweet...

David Perry said...

That's interesting and not something I had articulated. I wrote about Ethan Saylor last year and wonder how this comes into play.

Jennifer Koczan said...

Cops are inadequately trained to deal with special needs people. The problem I have with Ethan's situation is that they should have known when they saw him that he was special needs. They didn't know how to deal with him when he wasn't able to "come along nicely". I am disappointed in the police officers who handled it not just because Ethan died... I have worked in law enforcement my entire adult life. There is some training but I don't feel that it is adequate or enough. There just needs to be more. Not just on autism and dementia and Alzheimers.

Meriah said...

I loathe the socks - the fact that the committee did not listen to us last year when we clamoured to end it is dispiriting.

But yeah, I get what you are talking about with the low-hanging fruit. Personally, I think there has to be a balance between feel-good and real issues.The feel good does NOT need to be inspo-porn, That video (which I also posted on my blog) was 95% feel-good and 5% 'oh-just-stop' (- with the ending message...), and I think that's an acceptable ratio.

I write an awful lot about this stuff and it's nice to find your blog and connect. I agree with what Extranjera said too - more of us are coming out of the woodwork and being vocal about picking other fruit, not just the stuff that's low-hanging.

Things are changing and will continue to change.

David Perry said...

I didn't know there were voices trying to end the socks (I'm very much not a part of any organization). And I agree - the feel good can be so much more. I /love/ the video until the end, which leaves it sour. We can do better than happy!

JD Mast said...

David - I just over the weekend saw your post and wanted to give you a shout out of support. I agree with some of the others that you have to have a balance. My daughter is almost 15 and since she was little I have voiced concern about the lack of change in perception and policy. I think you hit it on so many levels. As I read the comments on your piece here and on FB, it seems we have all had some similar experiences and have some of the same concerns. My question now is how do we turn this into the change we discuss. Oh - and the sock issue is a hot topic. You aren't alone. I do plead guilty on cute kid pictures. I blog about reality and feel good stuff but I often put old pictures of my daughter because I know cute pictures draw readers. Thanks for putting this out there.

David Perry said...

Thank you JD. There's nothing wrong with cute so long as it's a portal to somewhere else. I just think as a community we're a little stuck on cute.

Jawanda Mast said...

David - sorry the previous post by JD Mast is actually from me, thesassysoutherngal (or Jawanda Mast.) My husband was logged in on my computer and it posted as him without my realizing it. Anyhow - thank you for posting this and at the very least causing us to start a new or revive an old discussion. And I agree cute is fine as a portal to change. That is my hope anyhow.

Karen Prewitt said...

Hi David, thanks to Mark and Jawanda for directing me to your blog. I agree 100% about the socks and can find nothing about this promotion that related to my kid, or any other, having Ds. I too wore matching socks Friday. It was hard not to "like" my friend's pictures of mis-matched socks, because they were all.over.the.place. I agree it might help raise awareness, but believe there's gotta be a better campaign to do that.
I'm old enough to remember when kids with disabilities weren't present in my (small town) school. They were tucked away, down the hall. We rarely encountered them. They certainly weren't "included". 35 years later, many schools have made good progress in efforts towards inclusion. There's still a LONG way to go. My belief is that awareness has come a long way. Since we're fairly new on this journey (7 years), it's hard to know why. Social media? Cute pictures? Feel good stories? I'm sure they've played a part in the mainstream culture getting a glimpse of our kids/teens/adults. But the story must evolve from there. The hard stories about low employment numbers, advocacy, humans trafficking, transportation issues, inclusion issues, health care, true acceptance and understanding are out there-but who is paying attention? How to get people to care about the tough stuff? As you noted, there are a few high-profile parents with beautiful blogs filled with pictures of their cute kids. Maybe when their kids have grown up and are encountered the tough stuff, their blogs will evolve too?
Thanks for being a voice.

David Perry said...

Thanks for commenting. It helps me keep writing. We're 7 years in too.

Karen Prewitt said...

You're welcome. I'm with Extrajera too, in that I *hope* people are starting to come around with other sides to the story. I have to say though, I post for our DSA FB page. The number of likes and comments on the "draw card" I post each morning far outnumber the comments/likes to the tough stuff. Hoping though, that people might find as their child encounters harder issues, they might come for the follow through stories.

0555b1d0-b43e-11e3-91af-000f20980440 said...

I do not have a child with DS---my daughter has Angelman Syndrome (at one time called "Happy Puppet Syndrome"...I know). There is not doubt that my daughter is cute, funny, charming, loving, etc., but I agree that seeing only those parts of her is what makes her "acceptable" to the general public, but also does her a great disservice. Talking about how challenging it can be to maintain seizure control is not as comfortable as discussing how lovely she looks in braids--- both are true, and neither is "bad"...it just "is". It is hard to ride the line between encouraging others to get to know by daughter by opening the door with "look how great she is" vs. stating our reality without eliciting the "ohhhh..." response. "Inspiration porn" is a new term to me, but I get it. Thanks for all the posts.

0555b1d0-b43e-11e3-91af-000f20980440 said...
This comment has been removed by a blog administrator.
David Perry said...

Thanks for your comment. And, wow, I had no idea about that name for Angelman syndrome. Wow.

David Perry said...

Judging by the gratifying response to this blog entry, people are ready to tell and hear some new stories.

GirlWithTheCane said...

Yours isn't a "surly voice" - it's one that that's tackling issues that are vitally important but that so few people want to acknowledge beyond parents who are facing the question of how to get others to see their child as an actual person and not a cute image. Thank you for your insightful writing on this topic and for the discussion that you encourage.

David Perry said...

Thanks for the encouragement.