Sunday, September 22, 2013

Down in Times Square

I was in Times Square yesterday.

Well, not literally ...

I clicked on a link that hooked me up with one of the Times Square cameras. I had been informed that for an hour that camera would film one of the big screen billboards as it dedicated an hour, from 10 to 11 AM, to Down Syndrome Awareness. Joe and I both had our coats on because we were just to go out but we both wanted to see a bit of the campaign. Several minutes later our coats were sloughed off as we were both entranced by the images.

Picture after picture after picture of people with Down Syndrome in relationship to their families, to their community and to their world flashed by. Several were stunningly beautiful images, one with a young boy, running, with his arms wide open, through a corn field, was simply art. Every now and then a fact would appear about Down Syndrome or people with Down Syndrome. Informative, yes, but it was the pictures that told the tale.

Not that it matters to anyone, I suppose, but I think that the organisations serving people with Down Syndrome do an awful lot right. They seem not to be afraid of the 'identity' of those they serve even as they focus on the 'personhood' of those they serve. The message that 'difference is difference' but 'the same is the same' is a difficult one to navigate but they do it so well.

And it's so important to get that one right.

Fear and denial of difference speaks only to shame. You get absolutely ZERO sense of shame from most parents with Down Syndrome who are active in the movement. You get ZERO sense of tolerance for discrimination either. I watched the pictures as they flashed by. I considered, first, the moments that were captured and how they came to be - loving families taking loving photos of kids that are fully and completely loved. Pictures like parents have, sometimes by the bushelful, the world over. I considered, second, the paper that must have been signed releasing these pictures to be shown on a screen in Times Square, filmed by a Times Square camera and broadcast around the world.

An act of love as an act of activism.


Disability Pride is still a young movement. It's still finding it's feet. When I speak of it in lectures, to disability professionals mostly, I get quizzical looks. More than once I've been asked, 'Why would anyone be proud of being disabled?' This from people who understand every other pride movement that could be mentioned. So, we've a way to go.

I congratulate whoever came up with the Times Square broadcast. I congratulate the thousands of people with Down Syndrome, the parents of people with Down Syndrome, and the organisations that serve both - you've got it going on.

From the tee shirts for kids: Am I rockin' this extra chromosome or what? To the tee shirts for adults: My kid has more chromosomes than your kid. There is a sense of fun, of pride and of defiance.

We were almost late to where we were going, but I didn't care. What I saw on this end was worth the apology on that end.


Anonymous said...

Wonderfully written as always Dave.

Jayne Wales said...

Sounds a great show of great images and will lighten everyone's day Im sure. I love those tee shirts too, fun and out there!

Anonymous said...

Thank you a parent of a child with Ds. We've been on our journey just 6 years. Ever since that day we were told our son would have a little something extra, the Ds community has been there for us-like a second family. Sometimes even more "there for us" than our own flesh and blood. We love our lives and proud to share. Love the Times Square Video!

John R. said...

It is always wonderful to see signs and elements of the "fruits" of a social movement. They are often at moments like you and Joe had yesterday. Unexpected and in your face. 40 years ago shame and struggle were common familial attributes when a family member arrived with DS. Now, there the family takes a breath, gets some early intervention stuff and learns how to best support their loved one, Then they buy some T-shirts in PRIDE of the person in their family. Happy DS Day! Thanks Dave!

Anonymous said...

I am not 'proud to be disabled' - I did nothing to choose it and it's not something I would choose for myself again.

But I am proud of myself for managing to find meaning in the thing that randomly felled me, made me different.

Well, more different: I had my share all along in life of being different.

I write. That is mine. Sometimes I write about being disabled - sometimes I write about writing - sometimes I write about the many other things that interest me.

What I'm hearing is acceptance: the kids with Down Syndrome - and the adults with it, too, of course - and their families accept. Don't try to change what can't be changed - and find meaning in the rest of their life.

It's the job of everyone who gets born.
ABE (Alicia)

AnNa D said...

ABE, Gay people didn't choose to be gay, black people didn't choose to be black, women didn't choose to be women ... but the 'pride' movements (though expressed differently in each of those communities) is strong. You may not embrace Disability Pride and you may need to find meaning outside of "disability culture" but many of us are proud of our community, our culture and who we are as disabled people. Your experience is your experience but you need to leave room for people to have different experiences.

Rickismom said...

I think that things are still very fluid. There is a lot of "my kids has rights" attitude.... and yet, wse bend over backward thanking society for the things that should be theirs

B. said...

Don't really understand a "proud to be disabled' movement. My 'disability' is just a part of me. Would rather encourage respect for diversity, etc. Thanks Dave, Abe and AnNa D for ideas, etc.

Jo Kelly said...

When I was 15, I was writing an article about disability - can't recall the exact circumstances but I digress. I remember asking my mother to proof it for me and she came back with - Jo - you are NOT proud to be disabled - take that out. I wondered for years about this - why is she telling me what I am and am not proud of about myself? Isn't that MY choice? I respect my mom a great deal and have always known that she's incredibly smart so I always have struggled with this. Now as a middle aged person, I AM PROUD of who I am and disability is a big part of that. So ya! Proud and loud - that's me! I am proud of who I am, what I've accomplished despite this ableist society and I will continue to be proud of that until I die. I've always felt that there are large differences between those of us who are congenitally disabled and those who acquire their disabilities - perhaps this is just another example of that great divide amongst us. The former AB's cannot wrap their heads around it as easily because they were once part of that ableism that people like me have lived with all their lives.

joann:) said...

Hi Dave, is there a copy of this video? I couldn't find it on you tube or online....

thanks, hope your day is going well! Joanne

Anonymous said...

Thanks, AnNa D, for making me think more about the issue of identity and pride. It is too long to put here (

Alicia (ABE)

Atomic Geography said...

I think the word "pride" can be problematic for some. Different people may understand pride as being at different points of a aggressive-assertive-self respect continuum. So different people enact whatever understanding they have. And one person can have and enact multiple understandings of "pride".

Certainly "pride" is useful for raising awareness, organizing and thinking through one's own issues. I do think it's helpful to be aware of the complexity. Hopefully doing so will help us combine pride with humility.

Dave, the event you describe sounds like many such people wee there.