The Power of Being Wanted

Every night I do something with Jude that I don't do with any of my other children. Every night as Jude falls into sleep, her beautiful lashes brushing her plumb cheeks, her sweet lips puckered out, I whisper into her tiny shell of an ear "You were wanted. Never ever forget that we wanted you." I have done from the first time she feel asleep in my arms until this very day.

Looking back perhaps I should have been whispering to my children these very words. This hit home when I looked at the children being crammed into too small holding rooms. Children who were fleeing the violence in their countries, alone at tender ages. These children sometimes looked like my children. And at that point I began to think about what it means to be unwanted.

This was on my mind as I read as the first flurry of news items about Baby Gammy began to come across my screen.  While the information surrounding Baby Gammy is filled with contradictions and the usual he said, she said, it is undeniable that Gammy's biological parents saw little use in the twin with Down syndrome. So they left him and took the sister who did not have Down syndrome. The pain of this action cut me deeply as the mother of a little girl with Down syndrome. At first, I focused on the issue of surrogacy as a business in developing countries, a kind of repulsive medical tourism laid out on women's bodies. And this is an important issue, and perhaps one of the main issues that ought to be focused on as this conversation continues. But as the days pushed forth, and more news came out, including the horrid interview with the biological father, I couldn't turn away from those words I whisper to my daughter--I want you-- and reflect on why I must say them to her and why I say them to my older children in different ways. Why I must push away with the softest hope of promise what the world seems to be telling me about  my child with Ds; about my Latino/a children. 

And then a cop shot Micheal Brown and the world exploded.

From across the Continent two stories collied on my horizon; and in a dream the collision of these very different things lit up the sky. I woke up with the words "I want you..." on my lips. You see, Michael Brown was wanted by his mother, and he meet death at the hands of someone who very likely didn't want him around--who saw him as a nuisance who needed to be erased. Today I read the comments in a vigil I partook in about how Brown was a bully and a thug and was likely very (un)missed by those he bullied. I have read about how he was someone who would have come to this end in the long run. "I want you..." I hear in the sobs of his mother, of her stories about her son's plans for the future. And I watch how the news tries to use those plans as a way to make a case for murder. But it's murder even if he was all those awful things people say, right? Proving worth...but only some of us have to prove worth. And that is where "I want you..." comes to be a statement that reveals bias.

I am aware everyday that most people wouldn't wish for a child like mine. When people find out that they are not carrying a fetus with Down syndrome they say things like "It's okay!" "We're safe!" And people tell you "I don't care about gender as long as it's healthy." I have had to leave parenting groups filled with very nice people because they describe getting a high risk on a blood test as a "Scare." Sometimes in my darkest moments, I wonder if all the people who love Jude would even want a child like Jude. I hear it sometimes when people say things like "You're so brave." and "I don't know if I could do it." What I hear is "I'm glad it's not me." 

Sometimes I even say it when I say "Not everyone could raise a child with Ds" as a way to think about abortion. 

Today it came shattering down around me. I read Dawkins' horrible words about fetuses with Down syndrome. According to Dawkins' it would be immoral to carry a fetus with Down syndrome. After all they don't contribute anything to society (one could make the same argument for Dawkins but I won't sink as low as that scum). And as I nursed my girl to sleep, I sobbed into her hair. Sobbed because it's not the first time I had seen such things said about people with Down syndrome. Sobbed because I know that this is not just one asshat's opinion but the opinion of whole societies. I know this because the abortion rate for fetuses with Down syndrome is painfully high. I know this because when people with Down syndrome are beaten or killed by the police or by people acting like the police, there is so little outrage. Instead it is hinted in hushed tones that perhaps this was the best thing. After all what future did these people have, really?

I have often tried to write about how I reconcile being pro choice with being anti-eugenic and I never get it quite right. I suspect I won't get it right this time but I am going to put this out there. When prenatal testing is marketed as a way to rid people of unwanted birth defects, we have eugenics. Prenatal testing as it is offered now is being offered as eugenic tool. When someone like Dawkins suggests that there is an idea of perfect or that a parent can should screen their fetus in order to choose the most perfect child, we are falling into the world of eugenics. Because the idea of testing as a screen to weed out what is undesirable is dangerously close to an idea of a master race. It is the promotion of a dangerous idea about how some people might know what it means to be a superior person, a superior race. And that should have us frightened.

And this is ultimately what the difference is for me between being pro-choice and anti-eugenic. I am utterly against infringing on a women's right to choice. But if the only choice is to offer a society where her child can be shot down by the police, maligned in the media, not given proper housing, food and education. If it is a world where her child is treated as subhuman, a world where people tell her she was immoral to carry her child, a world where people make memes of her child and mock that child. If it is a world where people casually drop slurs about her child and then defend their words as if they mean nothing..what kind of choice are we really offering? The reality is that we must fight eugenics in the ways companies word their tests, the way that genetic counselors tell parents of their options, the way that Drs. treat our children. We must fight eugenics at the government level by demanding the best education for our children which is clearly to be found in inclusion. By insisting that our children deserve to have saving accounts which can help them survive after their parents are gone and allow them an independent productive life. We must fight for our children to have meaningful and engaging work surrounded by other people. Eugenics does not begin and end with abortion, I am afraid, it extends into the lives of babies who are left behind (thankfully to loving parents), into lives taken too soon because value was not seen, into the words of those with influence. 

Every night until I no longer have the right to do so I will whisper to Jude "I want you. Never think think that I didn't want you..." and I hope that someday she will whisper to herself "I was wanted. My parents wanted me. My siblings wanted me. My friends wanted me. The world wants me." 

Another Trip Around The Sun

I woke up this morning with a foot in my face. An adorable foot grant you but a foot nonetheless. It's a pretty typical way to start my day. Over the last few months, I have marveled that not once since Jude was born have I ever imagine my life any differently. While this is not the path that I would have chosen twenty years ago nor the path I had envisioned myself, it is the path that has brought me an incredible amount of joy and peace. I spend every day surrounded in love and that is no small thing.

The last year has been intense emotionally. As Jude moved through her second year, I found my views on disability shifting even more as I struggled with ideas about difference and sameness, about how to fit those ideas into a voice that expressed just how amazing Jude was but how her difference did sometimes make things different. And I also struggled to talk about how having Jude changed me not because Jude has some magical powers granted through her extra chromosome but because the process of accepting Jude as is changed something deep inside me. I learned to look at the world in a new way.

The other children grew and changed as well pushing to me change even more. Being a parent, I think, is about change. All the time. Camille did trapeze and we watched as her newly found confidence shown as she swung through the air, twisting her body and dancing with the help of a bar and a rope. Piper shown in trapeze as well taking to this unusual dance form with a naturalness that was breath taking. Umberto has become such a neat , interesting person, finally emerging from his slight gaming obsession to expand his interest in other areas. I am amazed at these bright creative kids surrounding me, and sometimes even ponder how I had such people come from my body.

And of course there has been pain. There's always a bit of pain. On a personal level, I lost some friends. There were a few big blow outs that have alienated me from many different groups. I almost lost a good friend because of my own jealously. I almost shut down the blog but luckily I was able to find my way back to why I started the blog in the first place. Over the last few months, I've become stronger, more sure about what my writing means to me and while I still struggle with envy, it does not cover all that I do. I am saddened by the friends I lost, and am still not sure if I am okay with being alienated from all the major voices in the Ds community but I am learning to live with my mistakes and to just move on hoping that things will work out. And I have also learned that even when the disaster that happens may be painful that sometimes it was the right thing. I have given apologies to those I feel deserve one but have not done what I usually do and apologized for things that I don't really feel deserve an apology.

There was the emerging from a depression that I had been in slight denial about over the last two years.  Depression that was exasperated by my faulty gall bladder. Being sick for 9 months takes a toll on one's emotional life for sure. It also really played out on my eating disorders and lead to some revelations and also a lot of shame. But the good thing was that I realized that my over eating has much to do with emotional pain around ideas about food, my body, and value. In the end, I got the pesky internal organ removed and am feeling so much better. It's nice to eat without fear, and although I'd admit that I've been in indulging in some "not so healthy" foods, I feel zero shame. I'll get back to my normal eating schedule soon but right now it's nice to eat a fry and not feel like I'm giving birth. The other good part that came from all this was that I realized I really do need therapy and am going to get some next month. I feel like I'm making a very important choice in making my life even more livable.

Basically all this is to say that I feel like while the greyness of depression sucked a lot of my energy from me, it also served to let me rest, mull things over, and emerge with some new ideas and plans. It's funny how this thing is both so soul sucking and also affirming. It's why I think I have a hard time writing about my depression. Anyway, I am looking forward to this new year. I have many plans, books to write, posts to blog, new friends to make, old friendships to develop, and the very important work of nurturing the new relationships I've just started. I have things to knit and books to read. I have coming fall park days with my beasties. More love with H, the best husband a woman could ask for. I am filled with hope, even if it is a tentative hope. The world sometimes seems to be exploding before my eyes, and I feel the pain acutely. But it is the love that I feel that fuels me to go forth and say "No more."

The Difference In a Traffic Stop

When I about a month post-partum from having given birth to Piper, I went out for a brief foray to grade papers at the school where I taught. I was leaving that year, and wanted to make sure I left on a good note. On my way home, frantic with worry over my wee baby who didn't yet take a bottle, I was going a little fast. Okay I was going about ten miles over the speed limit which anyone who lives in Charlotte can verify is no big thing. I was pulled over very close to home. The officer who approached my car did so initially with his hand positioned over his gun. This was not surprising considering I was driving an older model Honda Accord in slightly ritzy neighborhood. Once he saw me though, he took his hand off and sauntered over with a smile on his face. He asked if I knew why I had been pulled over and I said "I know, I know I was driving too fast."

"Why the hurry?" He inquired as I finished gathering all the information he needed including my expired Maine licence.

"I just had a baby," I explained looking back toward the backseat where three car seats sat jammed together. "I had to go to my job and grade some papers and I'm worried about her."

The officer looked over my stuff and I saw his eyebrows raise over the license which had expired last year. "I'll be right back." he said, moving back to his car. I waited sick with worry over not just Piper but over a ticket that I knew we couldn't afford, and over the possibility that I was going to be arrested for driving on an expired license.

When the officer returned after what seemed like a half hour but was more like ten minutes, he handed me my stuff with a smile. "I'm going to let you go with a warning on the speeding. But I am going to write you up for the license so that you'll go get a new one. If you get it done in the next month there won't be a fine. You have to go to the courthouse and show that you got your license updated."

After assuring me that I could drive home, I thanked him profusely and went on my way, thinking that the CMPD were actually pretty decent.

But then my husband got pulled over by the same department. My husband who always obeys the traffic rules. My husband who frankly drives like a little old lady. He was pulled over in a "rough" neighborhood on his way to school/work. There were cars passing him the whole time even though he was already going about 7 over the speed limit. He was the one pulled over though, and it will become apparent why. The officer who approached him never took his hand off his gun. He harassed my husband for twenty minutes with questions like "When's your birthday?" "What's your address?" after he had already had his license in his hand. He even went to his car to run the license, and returned it asking the same question. It was clear that he was fishing to see if my husband was undocumented. He snorted with disbelief when my husband explained that he was on his way to teach a Spanish class at UNCC. And in the end, not only was my husband too late to teach his class, he was given a ticket despite his clean record. A ticket so horrendous that he had to go to driving school with a bunch of drunk drivers to get the points removed.

And this is not an isolated incident. Horacio was stopped on his bike for passing a stop sign, something that I notice at least 97% of the bikers in Athens doing (and not motorcycle bikers, bike bikers). He was asked if he was "blind" and given a lecture. He was stopped for supposedly running a stop sign when driving the van even though he was stopped TWO blocks away from the said stop sign (the cop visibly following him). When H had to open the door since the window was broken, he put his hands up, and when the cop, hand on gun of course, pulled up beside him, he was scared as he gestured to the broken window that he was going to be shot.

I hear again and again how if you're compliant you'll be safe. If you are an upstanding citizen you'll be protected. And I look at my husband who is a brilliant PhD student, a teacher of many years, an amazing father, and I wonder why he wasn't protected. Why he was harassed whereas I was let go. And it's not just me who has been let go. We watched a police officer give a breathalyzer test to the preppy albeit slightly scruffy young man who had just hit our parked car so hard that the car was blocking our neighbors driveway. We watched at that young man pretended it was his gum that made the alcohol content too high. We watched as the cop refused to let him drive home. And then when we picked up the accident report we learned that the cop hadn't even charged him with drinking and driving. In addition, we never got any money for the car he destroyed because the kid was driving without insurance. H often asks, "I wondered how things would have gone down if I had been the one who hit the car."

The fact of the matter is that if you are a person of color in this country you are in danger. It does not matter if you comply. If you are upstanding citizen (and please don't give me this bullshit about speeding being against the law), if you're educated, if you're documented, etc. I don't give a shit if Brown really did steal some cigars (which it isn't clear if he did and it is clear that the officer who shot him dead did not even know about the shoplifting incident). I don't care if Brown smoked some pot in his life. I'll admit to shoplifting as a teenager. Hell most of my Wild and Wet nail polish collection was shoplifted from the local Woolworth's. My brother stole all the time, and was even brought home by the police a time or two. I have a few white friends who smoke weed and somehow I don't think most of us are going to get down with shooting pot smokers. In this country if you are a person of color, you are in danger just for being a person of color. When you are not allowed to break the law and face the same consquences as your white counterparts that is racism. You are in danger. Maybe not more danger than someone with a mental or intellectual disability but certainly in as much danger. There is an assumption that if you are different, that if you act in a way that is different, in away that does not immediately acquiesce to obedience than you are fair game.

I am not in a place to write as eloquently as I'd like on this issue but there are several very good bits of writing out there. David Perry, in particular, has written a truly excellent piece on the cult of compliance. I can not recommend it highly enough.