Strike A Pose

When we've been out all day, we always stop at the bottom of the drive way to check the mail. Our house rests on a slight incline and while it no doubt would be great exercise to walk to do this task sometimes a long day begs a forbearance. One day, last year, Piper threw the mail on the passenger seat and ran up the hill to grab her one of her many cats. I zipped up, parked and turned to look at what we had gotten. Most of it was junk, and on any other day the Back to School flyer from Target would have qualified as junk as well. But that day as I looked through it, I found myself blinking back tears. Nestled in the middle was a surprise. A young woman, not a baby, a tween with Down syndrome was modeling a back to school outfit. She looked, as did her peers posed around her, stylish and cool. She was smiling, and yes she was beautiful. No, not merely because she had Down syndrome but really in a societal acceptable way beautiful. Shining brown hair, sparkling eyes, perfect skin, slender. Check and check. I was surprised to feel to the tears pushing against the back of my own eyes because I as those of you know me, I am hardly a fan of a the capitalistic, consumer culture in which we live. But there was something undeniably powerful about seeing someone who had the same genetic disposition as Jude on those pages. 

My relationship with advertising is conflicted. I do not pretend that I don't own things for example, and like many people I am often swayed by glossy ads. I own an Ipad and an Iphone for example. My list of sins in terms of consumerism are great and I won't bore you all with my confession but react assure I own things that sometimes make me feel guilty. Suffice to say I don't always buy organic and the underneath of our Christmas tree is not loaded with locally crafted things. But I am aware of how capitalism kills, and the destruction is wrought on all living things including our planet. For every wise choice I've made to askew the system, I've made another that buys right into it. I suspect for most leftist this the reality of our life. We are against a system in which we are embedded. Getting out is hard. Being aware is not.

When Jude was born, I became aware of a struggle within the Down syndrome community concerning the problems surrounding the sharing of images. Like many, I found it frustrating that I couldn't get many of my friends to "share" a news article about Ethan Saylor's death but could easily get them to circulate a picture of an adorable baby with Down syndrome. Even my small readership improved with a picture of Jude thrown into the text. Our society is often regrettably attracted to images; lovely people, cute children, puppies and kittens. And of course we are more attracted to images that fit what we consider beautiful which often means white, blonde, thin, glossy. I too found myself frustrated that not only were the limits of many activism dead ended with lots of photos but that those photos showed a rather untrue picture of Down syndrome (most babies being born with Ds are being born into Hispanic families yet we are still seeing mostly images of blonde, white children).  

And this is where my mind began to shift a bit when it came to putting up pictures of Jude. My daughter is not just a toddler with Down syndrome. She is a female, Latina child with Down syndrome. For some time, I have felt it important that her face is out there even as I feel uncomfortable with advertising and the limitations of advertising.  The reality is that all civil rights movement include branches that fought for control of image as well as political gain. There is no denying the problematic representations of both African Americans and Latino/as in the media both in the past and now. These battles over representation continue because image does matter. When a group is denied their face in the most powerful forces of our world, and make no mistake the media is a powerful force, they are not represented as fully as those who are seen. This is hammered home in areas in other than race as well. Look at the push for "real woman" in advertising. There is something stirring in seeing your face, your body, your skin on the screen or in a picture. I know, as a fat woman, in a thin centered society, it moves me to seeing performers, models, and actors who are fat. In them, I can see glimpses of myself, and wonder for a moment if I am more valuable than I was lead to believe. 

When I first decided to put up Jude's picture with the hashtag #Imready, I knew there would be whispers that I would not necessarily hear. And I have seen glimmers of dissent that as yet have no reared their head on my radar. I suspect many think I sold out, or even worst that I was selling my daughter. I did one photo and hashtagged Carter's as Jude was wearing an outfit from the store which is a favorite of ours. I wasn't going to do it. I though long and hard, and talked with H. In the end, after seeing many pictures of children who were white, we decided to add Jude's face. I struggled as her picture was shared by both friends and strangers. But in the end, as more and more pictures came rolling in, I started to feel more comfortable in our choice. The children, and ultimately tweens and teens, in the photos that started to penetrate my feed were of all colors and abilities. They were beautiful in their diversity. They were the faces that challenged the public to rethink what it meant ot have a perfect child; a beautiful child. Just like when I saw the first Lane Bryant models strut across a cat walk, I started to shift what I saw as beautiful.

Along time ago, when pregnant with Piper, a coworker asked me "Aren't you scared?" "Of what?" I asked her. "Oh you know," she said, uncomfortable, "You already have two beautiful children, aren't you worried that the next one might be," she paused, "Not beautiful?" We left it unspoken about what it meant to be unbeautiful but deep down we both new. We both were thinking, due to my age, of someone like Jude. Then I felt that deep trickling of fear. A fear that ran deep, dank and dark when I found out Jude had Down syndrome. I remembered that conversation when I was crying about my unborn child two years ago. I wish I could back to that moment, and say "All people are lovely." Because you know we are. But even more so people with disabilities are like us all. Most will not be models or possess the look that is required to be a model. However there are a few who do. Who shine with their perfect skin and clear eyes. I, myself will never look like a model. Nor have I ever possessed that kind of beauty. Yet in my own way I am lovely too. Jude, if you'll excuse my mother's bias is indeed lovely. She is as lovely as any of my other children. I am not sure how it happened but I was gifted with very beautiful children. One just happens to have an extra chromosome. No biggie. I doubt though that even with her beauty Carter will come calling. But I do hope that with every time her picture is viewed that someone will remember that beautiful has the ability to be reshaped, redefined, challenged. 

I end with an assurance that I have not lost sight of the political motivations that push me to fight for Jude and for others with disabilities. Representation in the media is important but it is not the end all of a push for equality. Losing sight of that goal would be a betrayal of all that I hold true. But I am not going to pretend that part of our push is about making people with disabilities more visible and more present. Pretending that being pretty isn't part of that push would be disingenuous. I would suggest that the push to represent all humanity in it's glorious unairbrushed beauty is much much bigger than the disability movement. To suggest that we shouldn't bank on appearance while ignoring how often we do just that in other areas is indeed problematic.