Friday, March 20, 2015

A Day In the Life of Jude



When I first wrote about Jude, I included a bit about my fears for the future in regards to our family. I spent a lot of time imagining how very different our lives would be. I found myself dreading some of the things I thought might be mandatory. And I worried that having a child with Down syndrome would disrupt our rather bohemian life. While having Jude has brought change and new considerations, the change has not been earth shattering. Jude fits us so well and she fits into our lives as we fit into hers with perfect ease. The adjustments we've made have actually made our lives richer and pushed us more into the community. 


Tuesday, February 17, 2015

Monstrous

A couple of weeks ago, two stories flashed through my Facebook feed. The first time they sped through and I moving through the paces of life missed them. The second, third, fourth, times they caught my attention. Stories on plus size models usually do that for me. The first about the FIRST SPORTS ILLUSTRATED SWIMSUIT MODEL automatically had my eyes rolling far back into my head. She's a size 12. Plus sized. When the second story, hit my feed, I almost didn't open the link to the story. From the thumbnail, this plus size model didn't look plus sized. But always on the look for some distraction, I hit the link and loo and behold here was a model who had my body.  They are both beautiful woman. And I guess technically if you're a double digit you're a plus sized human.

But....

I already feel like a monster. My body takes up too much space. I sometimes find myself curling my arms around myself, pushing myself into corners to ease the worry I imagine on people's faces when they see me enter a small store or restaurant. I carry wounds from the past, sometimes not so distance, of being mooed at by adults in Walmart or from cars. Jr. High taunts of "lard ass," "pig," feel like they hang like labels on my body. A life time of looking in the mirror and never seeing a body worthy of love, praise or acceptance.

Is it any wonder, I think, looking at a model who in my mind is safely in the slim category, that even when I hit a size 12, I see a fat woman in the mirror? That I still walk the world feeling ungainly, lumbering, obstructive? Even at a weight I find acceptale, I have been told by doctors that I am too big to be healthy. A size 12 for the rest of the world is fat. Period.

And what does that make me now? At a size 18, I am clearly in the monster category. I am a giant among women. Shameful and disgusting. Or so I am told. I am regulated to special stores who only in the last ten years began to carry clothes that were sexy and lovely. They cost three times as much as Target but at least it's a whole store and not a tiny corner hidden from the "normal" clothes. Models my size are mocked on line with a cruelty that leaves me breathless. When I dress up, I sometimes still have to push aside that I don't deserve to look attractive because my body is a monster. Monsters are not supposed to be pretty or sexy.

I do not write this to garner sympathy or to hear about thin bodies being mocked. I am not unaware that all women's bodies are policed. I write this because the reality is that when slender women are held up as plus sized, we not only continue to push a very rigid notion of acceptability but we make other women's bodies monstrous. I am 42 years old, and I have dieted my whole life. I have starved my body, purged it, exercised it to exhaustion doing things I hated. I have hated this body, mocked it, sliced it open in disgust. I misused it. I tried to pretend it didn't exist. It was never a good enough body. It was never thin enough. Never pretty enough.

As I walked through life trying to make myself invisible, I could never imagine myself as anything but highly visible. Last year a woman published photos of herself with people reacting to her weight. Many many who commented said she imagined the reactions, that she was just seeing things that weren't there. There were other stories. But what many missed was that this was this woman's story, and as a fellow fat woman I knew the story well. I knew the looks and snickers of young college girls when I shopped. I knew the jokes about weight coming from men who were often bigger than I. I knew the pain of having women flirt with your husband in front of you, not that you weren't invisible but that you were so insignificant that you didn't matter. Eventually these moments add up and become the narrative even when the words are not being spoken.

And I woke up a few months ago, done. Done with the constant self hatred that I carried on my shoulders like a yoke. Done with the paranoia of worrying what others were thinking when I eat or shop. Done with worrying if people were mocking me. Mostly I was done with the years and years of self abuse. I started to buy lovely clothes. And I dressed the way I wanted to dress not the way that society deemed OK for a monster. I started to wonder if maybe I was sexy and beautiful in this monster's body. And eventually I started to think that perhaps I was not a monster.

Monday, February 09, 2015

Qutting Isn't Easy

The words from the message haunted me long after I shut my computer down. During the conversation, I had been able to show a disregard, a carefully calculated distance.

A new PhD program? Pfft. I was done with the academy. Over it. Moved on.

But later that night as I lay in that inbetweeness of sleep and awake, I started to make plans. I could retake my GREs. H wouldn't mind do some teaching jobs while I did my thing. Umberto would be old enough to do some babysitting if we had gaps. Surely I could juggle therapy and class schedules with a little magic. Only when I felt the tears starting to form did I snap myself out of this hazy dream world.

For a few days, I walked around with the heavy load of failure. I joke often that I am an academic failure but like most jokes this one has a stinger. If I had my PhD, I could rely on the evidence that on the impossibility of tenure especially for women. But I don't have that piece of paper that at one point represented to me the pinnacle of success. Instead, I was the person who couldn't even get her foot in the door for a more noble failure. When I told people that I was not accepted into a PhD program, I imagined that I could see in their eyes my own thoughts: She wasn't good enough. She wasn't smart enough. Of course time dulled some of these feelings, or at least help me push them into the background of my life.

As time puts distance between my academic past and me, I found myself still floundering. I no longer posted on my academic friends post and when I did I offered apologies for my ignorance. At some point, I stopped reading academic books because it felt like torture: launching myself into something I loved but from which I felt utterly disconnected. I no longer imagined myself as a free range academic because without a PhD and an institution no one was going to make my work seriously. I alienated myself and struggle through this gap of wanting and not wanting.

When I woke up the morning after that message exchange, I realized just what I had lost. There are few things I can list under what I believe. Belief is a horribly problematic word and concept. But I do believe that we humans are meaning make machines. All of us find ourselves constructed by stories, practices, and significations. Some of us have more power than others to shape those constructions of course but we all engage in this activity. Usually unawares. For the last few years, there is a part of my life that feels in stasis. Unconstructed. The part of myself that I saw as an academic was a part that had been built upon for many years. Boards laid in place through encouragement and amazingly enough rejection.

See, my original plan from the time I was ten or so was to be a writer. I tried my hand at publishing when I was in my 20s and like most early writers faced a landslide of rejection notices. When I was 23, I applied to the creative writing program at a local college. Not only was I rejected, I was rejected after receiving someone else's acceptance letter. After all these years, the feeling of joy when I read that I was accepted only to go on and realize the enclosed story wasn't mine still aches. I imagined this some other person sat at her kitchen table reading MY rejection letter.  I remember when the head confirmed the news, and said as a consolation "We felt that you would be successful at many things not just writing." At the time that felt like cold comfort. I walked around in a fog of pain, insecurity, and meaninglessness. The yearning to be told if I was good enough had been meet with a resounding no and now I wasn't sure if the knowing helped.

But this time I got lucky and a professor commented that I was smart. A horrible writer but smart. I believe his words were "I don't know how someone as smart as you can have so many grammar errors." But it was a lifeline and I took it in my hands like a drowning victim. For the next 15 years these words followed by others shaped me into an academic. Of course I struggled with that nagging insecurity but it was something. I was something. Somebody. I had purpose.

The first rejection letter stung. But when the U of Toronto letter marked my final rejection, I felt the same way I did when I had to sit with that department. Another confirmation that I was indeed not good enough. You wanted to know I taunted myself because I house a deeply mean inner girl. Fortunately this time around I had other meanings built up. My family. Homeschooling. Things that were vital and important.

However I still floundered because there was this piece that felt missing. I tried religion, and for a time it worked. I imagined myself getting into theology or counseling. But the problem of not really believing (and yes I know the word is complicated) kept me at a distance. I tried to engage through practice but it felt fake and awkward. I tried spirituality recently with the same results. I am not a religious person anymore even though I still find religious things deeply fascinating. There was no building me into that religious person. I dipped my foot into the being the "disability mom" but that didn't fit either. I don't like making so much of my meaning rest on my children. Icky.

Lately I tried writing. I finished a novel. I think it's okay. And I realized when I got the news about a potential graduate program close to me that something important had shifted in the last six years. There was an identity in that space; one that scared me yes but it was there. I wrote my novel in a month. A month of frenzied, wonderful, exhilarating writing. Editing has not been meet with the same enthusiasm. It is February and I am only 30 pages into my novel. In December, I told myself it was the business of the season. Exhaustion from writing so much so fast. The drudgery of five six kids and a six mama. But by mid January I admitted it was fear. Wonder if my novel was so horrible I couldn't even read it? I couldn't bear the thought. Still I pushed myself one to day to read. And yes there were some major problems but it was a solid story. I pushed further and realized I still loved my characters, and loved my plot. Tentatively I began to sit more firmly in the idea I was a writer. An identity I had shied from since that long ago rejection.

Over the last few weeks, a few incidents have popped up that make that old insecurity crack open again. Fears that I am foolish and presumptuous to take on the title of writer. Fears that the local college had it right in denying me the title writer. Graduate school became something else in this moment of fear. It was the second choice. Something I knew and felt comfortable doing even as I felt I was not good enough. A chance to prove myself and make a claim about worth. Graduate school for all it's shit did a fairly good job of giving me constant feedback about my place in the world. Being a writer does not offer these same comforts. My blog doesn't get enough hits to give that kind of feedback. No one who has read my work has come out and said "Wow you're shat time to move on love"  but they've also not said "Wow you have talent. Keep writing." And slowly I am starting to think that even if someone did say these things that this wouldn't be my defining moment as a writer. While I don't buy into the ridiculous notion that we give ourselves meaning, I am sure that my identity as a writer comes from having stories to tell not necessarily from having admirers. And for the first time, I feel that the academy does not get to be the end of my story.


Saturday, January 17, 2015

Grumps

My memories of my Grumps are often hazy. I have lived away from him for along time, and now he is gone. When I search the recesses of my mind, I don't remember him as a chatty man but then if I push I remember his words and his deep voice thick with that Maine accent. Because of time, it was all too easy to remember not being close to him but with the memories of his voice came the memories of doing things with him. Riding beside him in a green truck with a big white stripe to visit his mother, my great grandmother Sarah. Sometimes he'd stop at one of those general stores that only exist now to lure tourists in and buy me penny candy. I remember sitting on his lap while he sat at the kitchen table. I used to help him do chores from cleaning out his work truck to helping around the yard. I can still remember how his Lucas truck always smelled like oil. I remember that he used to give up his space in the bed so that I could sleep with my Grams when I spent the might. Or how he would carry me inside after a long car trip, and I'd pretend to sleep. I remember that he always smelled like Old Spice, and that when I was old enough to buy Christmas gifts, I would always get him Old Spice gift sets. He always acted thrilled.

But the story I like the most about my grandfather is the only I can't remember. I only know the story because he loved to tell it. My earliest memory of the story starts with me leaning against my grump's leg, and saying "Tell me about the bathroom when I was a baby!" And he looked down with a grin.

"One night I woke up," he began, "Because I could hear you crying."

"I cried a lot right?" I interupted.

"Oh yeah," he chuckled. "You cried all the time except when Ginny was holding you."

And I'd turn to smile at my grandmother. 

"Well that night you were crying, and you just wouldn't stop so I got up to see what was going on. I walked down the hall and the crying got louder. I thought "why is the baby in the bathroom? I opened the door, and there you crying your head off in the tub!"

"The tub was full of clothes right?" I asked.

"Yup, and you were right there in the middle with your face all red and you were mad."

"What did you do Grumps?" I asked

"I picked you up and brought you to bed with Ginny and me." 




Monday, January 12, 2015

January Is Coming

"We should get that fur coat from the meme, and make one that says "January is coming." H jokes, and I am able, now, to laugh a bit. We watch each other across the sleeping bodies of the two babies still caught in that tender time after an intensely emotional  moment. Only recently have I been able to voice to H that I am finally falling into that not so sweet melancholy of winter. He always knows. Guesses when I start to develop my extra prickly edges. He reads it in my refusal to go out and do things; in the way I sleep just a little too much.  The problem with naming is that it brings the thing you'd rather avoid to the forefront, and while we get better at discussing the beast in my head, we still fumble in the beginning. H wants to fix, to make me better which I think is a pretty typical response, and I fall into the self imposed patterns of guilt...

Why can't you just be happy?

After 15 years of being together, we both know that I will come out okay. Spring will come just as winter does, and in the moist thaw when the buds of flowers stretch out of their tightly wound folds, I will stretch my own self in the warm sun, the rain, the fecundity of life. But the fear comes in that we both know that in my past that coming out wasn't a promise, and that sometimes, in the claw of my beast, I made not so wise choices. Dangerously bad choices at times. However those stories are in the past, and the pages before us our only half written, and tell of joy. I realized a few years ago that the darkness is never fully dark. If I peer closely, allowing for eye adjustment I can see the white hazy lines of joy.

The answer is that I can be happy. But...my beast always pads besides me. Quiet and waiting.

Last year I spent a lot of time exploring my own contours. It's been awhile since I spent time examining my own, what? Psychology? Mind? Those are all hideously inaccurate terms but they are what I have in our limited lexicon. I strolled through forgotten gardens, and long abandoned walkways. I swept the cobwebs off old memories. Those things which I thought were dead were not so dead. There is power in the things that one thinks are dead. But I had a new magic with me. The magic that comes from time to heal, time spent learning new ways of being in the world. Magic in the form of innumerable moments of joys. Spells cast unknown with each moment spent in the fullness of love. When I blew the dust off an old tome from my past, the hurt was the twinge of a phantom pain as opposed to the fresh pulsing of a new wound. I learned some new ways to approach the past, and through that the always present beast.

As I sailed through December buoyed by the Christmas season, and then caught up in weeks of colds and runny noses, I could feel my beast coming. Or perhaps just the nudge of a head under my hand the way a cat casually reminds you that they exist. As I felt the bump, I began to ponder something which had been gathering form in my mind for months now. What if one accepted depression the way that one accepted other neurological differences? I admit it's a thought that still leaves me cold, gasping, terrified. But I realized as January loomed ever closer that what I had thought of as acceptance was not really acceptance. The way I drowned, fighting and clawing for the surface, in the depression was not an acceptance. It felt like being pulled by a swirling eddy, a force beyond my control. No this time I wonder what would happen if I treated myself as the depression came not as someone who was ill or crazy but rather as someone who deserved care and love. What would happen if I saw the depression as not some alien thing but as something a part of me? What if my depression wasn't a monster but a beast? A beast that I don't fully understand and maybe don't quite trust yet but a beast that I do know.

What would January look like if I took care of myself and my beast? So when the urge to hermit came over me, I didn't fight it. I didn't push myself into being with others. Ignoring the old adage to surround myself with social activities to keep afloat, I have instead made sure I have books and yarn. I do enough social stuff after all with the beasties and their many activities. I didn't beat myself up for not wanting to be with people. Even people I liked. When the restless energy comes over me, I do yoga poses, or I walk around the house. I clean until the energy is spent, and then I sit and read or knit. I am gentle with myself. When the guilt comes as it always does, I try to shrug it off, reminding myself that my neurology is what is. Neither good nor bad. Just there. When I feel the impossibility of doing anything, I remind myself that I will make up for these days soon. I am never always without energy, motivation. Perhaps I must let those seeds sit deep in the earth before the push up with their green sproutings.

And I realized the other day as we tumbled in from a family expedition that I was breathless with laughter. I can be happy. Or perhaps I can feel happiness even in the midst of my beast. A beast that doesn't really walk beside me but inside me. Part of me. There even when the sun chases away the unbidden sadness of depression. I am not sure what will come of this new acceptance. I don't know if it will work say next week. Perhaps I will have to try other methods to care for myself. It doesn't matter. I will do those things but I will do them with a language that doesn't embrace eradication or destruction. Perhaps if I can move away from seeing myself as crazy or mentally ill, I can begin to write a different tale about a woman and her beast.


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.