Sunday, December 28, 2014

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. 

Tuesday, December 16, 2014

Two Years and Rising

When Jude was born two years ago, I couldn't imagine NOT thinking about Down syndrome. From the moment the Dr. uttered over the phone "The fetus has Trisomy 21" my whole world seemed to stop and switch rotation. In those early months, it was always Down syndrome (don't believe me? Go look at those early posts). Don't get me wrong, I don't think it was a bad thing at all. I learned a great deal in those early days about disability rights, and I wouldn't give away that experience for anything.

I kept insisting that our world hadn't changed that much but the reality is that of course our world had changed. We were not the same people we had been even a year before. I never considered myself Abliest but I was in so many ways. The growth and the pain of that growth was hard but so important. How I saw the world went through a radical shift, and I became a better advocate for my children because the reality was simply that I already two children with a disability. I had just never acknowledged it, or rather I had acknowledged/accepted them for who they were but hadn't push that thought process to embrace a bigger arc of people. Jude's birth propelled me into that world, and for that I will be ever thankful. I've meet some amazing advocates, and count myself lucky to be an ally.

But still in the day to day aspect of our life, the change was smaller. The change was simply the way a family dynamic shifts with each new addition. Jude's integration into our family was not always smooth but it was mostly joyous. Now she is just another beastie which is quite something. I don't think any of us even think twice about the Down syndrome. It's not that we don't think about her having Down syndrome. We do. We know. It's just not a big deal anymore, or more it's just common place. She just is. She's here. She's loved. She's a part of the tapestry so smartly woven into the fabric that you'd have to flip things around to find where her thread started. Only then could you see the bumps, the missteps we made, the things we learned, the ways we changed. But from the outside, it's just this toddler. No longer a baby.

In the last year, Jude transformed from our sweet baby to a clever, mischievous sweet toddler. She's a whirlwind of energy that touches everything and everyone in the house. She is fierce and independent as she learns to do things on her own. She scorns our help, and figures out how to do things her way. She has become cautious about her smile, and doesn't offer it with the same abandon she did last year. Her smile is now a gift not to be won but to handed over at her will. But she is not afraid of the world around her. She walks as if she owns a room, shunning those who would block her or restrict her purpose. She is a queen, and it's clear in the way she holds her head.

For me these days of getting to know Jude do negate the kind of thinking about Down syndrome that soaked through the days when she was younger. Now it is simply an aspect of her. I no longer fear the future the way I used to when she a baby in my arms. Or rather I fear for her future the way I do with all my children. There is no hidden corners of wondering if she will not talk, not run, not be independent. Instead, I am leaning into the days of shaping as she grows into ever more being. The future is murky as those magic 8 balls from my childhood would tell me. No surprise there.

This everyday texture to thinking about Down syndrome--to living with Jude who has Down syndrome--has changed they way I write as well. I am not sure what I have to offer. I suspect my greatest use is to offer up the voices of those with disabilities. I am not a good blog writer, I suspect. I don't research enough nor do I have that knack for pulling information together in an interesting way. There are others who are much better than I at this kind of writing. And sometimes, I worry that I will tell too much of Jude's story. That in the end, I will have paved too much of her road. Perhaps, I think, it is best to let that murky future hidden in the inky depths of a Magic 8 ball reveal itself to who it will. 

Wednesday, December 03, 2014

What Completion Feels Like

Sunday was frantic. I had been out for most of the day Saturday, picking up books for the kids' Yule gifts as well as hitting up the yarn store. I try to make sure I hit our local businesses for Small Business Saturday so they can feel the love. But in the back of my mind, a little voice was screaming 'GO HOME WOMAN AND WRITE. I only wrote about a thousand words Saturday sneaking onto the computer in the little in between moments. We went out that night, and I tried to relax. Tried to look at books. Tried to knit but that voice wouldn't shut up. I paced a lot, recording in my mind my final scene. And I did go home to type until exhaustion drove me to bed. Thus Sunday after our weekly brunch (and for a bit before) I started. I wrote for ten fucking hours. When I wrote my last sentence: "I don't know if was him peeking through that veil or the painkillers but it felt like a benediction." I was so tired that I didn't even feel celebratory. I just felt like I needed sleep; like I might never want to write again. And then I felt restless, as if there should be more feeling. After all I had just finished my first novel. I wrote almost 97, 000 words in a month. I had "won" National Novel Writing Month by the 15th but I won my own goal on the 30th around 11:00 at night.

I'm not good for the long haul in most things. There were times honestly when I worried about being married, about being a mother because of this thing that I saw as a distinct character flaw. My teachers used to say I lacked "follow through." Indeed, I admit it honestly, it's always been hard for me to sustain interest in one thing for too long. I did two majors in college and a minor for which I suspect I had enough credits to be a major if they had offered one in Women's Studies. I managed to finish my MA but I'm convinced that was because my adviser made me do it. Last year when I decided to do NaNoWriMo, I knew there as no way I could do a novel so I did short stories and played around with the idea that I ended up taking up again this year. It was all part of my need for short projects. Even my knitting reflects this: hats, mitts, baby things. I've been whining about the sweater I've been knitting for Rowena whose is four and not big for months: "It's never going to end...."

I realized years ago that I place a lot of worth on the moment of finishing. When I lost a a shit ton of weight after being pregnant with Piper, I remember hitting my goal weight, and feeling really let down. I don't know what I expected to happen. Balloons and confetti I guess. This was the same thing that happened when I finished my MA. All this time spent towards the completion of a goal lead towards one moment that didn't live up to the imaginings I created of that moment. I always felt like a kid after opening up your Christmas presents. All that hype for maybe fifteen minutes of excitement.

When I decided to write this novel for November, I remembered both my past failures at going for the long haul, and the fact there's not always "satisfaction in a job well done." People always forget to tell you that sometimes there's a  depressing dip when things are completed as well. But I was determined to prove to myself that I could write a novel. After all I had dreamed of doing this for my most of my life. I needed to know that I could sustain a story for more than few pages. I told myself as I started that it didn't have to be good; it just had to get done.

As I wrote, I roller coasted through a variety of emotions. Days when I was in the valley looking up and knowing that the exhilarating climb was coming followed by days when the descent was wildly coming up to crash in my face. I wrote through self doubt, and frankly hate: hate for my story, hate for my talent. I pushed through my own snobbery at what counted as "good" writing including engaging in numerous debates with H (he arguing against the snobbery). I had to examine my own sense of weird self-worth: you should be writing the "good" stuff and you suck as a writer no one is going to read your bad stuff. I wrestled with the guilt that told me I should be using my writing time to blog about: racism, sexism, disability. While I wrote, I participated in a community of wonderful writers who gave menplot pointers, helped me through tangles, and shared in the delicious chaos that is NaNoWriMo.

When it was over, and I sat reading my last sentence, I realized that old feeling was coming. "You did it," this voice hissed, "and now what? Who cares? What a let down!" H decided we should do a celebratory ride through town to look at the Christmas lights, and as we drove, I struggled with the let down. I held onto the planning for the second novel. I thought about all the things I could do again: knit and read (okay and clean). But it didn't help. I sank into a kind of sadness. I bought a bag of candy and over indulged something I haven't done for a couple of months now. Luckily the nature of this season saved me from myself, and I was soon caught up in the business of things to do.

This morning as I was taking my shower, I thought about the two paragraphs to this post that I had written the night before. I had a total revelation as often happens to me when I'm showering (I'm convinced it's because there is no way to I can write anything down). The whole point isn't the end. It's the process. It's why little Ms. No Follow Through has been married for almost 15 years, and has five kids she hasn't abandoned. You see being in this family, my family, has always been about the process. There's no end to parenting or being a partner to someone. Things change, and evolve requiring multiple ways of addressing, being, and becoming. None of us are the same as we march through time, and being a parent to five very distinctive individuals has hammered this fact home. But I had never though to apply this philosophy to things like writing, or studying or reading.  When I really thought about the month, it wasn't about that one moment although it was a good feeling to meet my goals, rather it was the compilation of all those days, the doubts, the perfect sentences, falling in love with a character, having characters transform or insert themselves into your story no matter how hard you try to kick them out. It was the sprints with new friends at coffee shops, messages back and forth with problems, that one guy who saved my romance story.

When I thought back over my life, and the disappointment about completion, I realized that I had forgotten about the process. My MA did not just appear (sometimes I wish that was so). No, I wrote and anguished. I talked and learned. I made a good friend in my adviser. I had wonderful classes. I had wonderful conversations with H over theory. I meet some fascinating people. When I lost the weight, I learned a lot about myself and how I used food as a drug. I learned how to think about food in new ways, ways that actually enhanced my enjoyment of eating. And so it was with my novel. And so it is with all my writing. I am proud of my little book. Proud of what I accomplished. But what I will remember is the ride.