Wednesday, August 20, 2014

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." 




4 comments:

Anonymous said...

my children do not "technically" (by prenatal testing standards) have a genetic disorder... but psychological disorders run deep on both their maternal and paternal bloodlines. Out of my 4 children there is a VERY good (bad?) chance that 2 if not more of them will have depression, bipolar disorder, alcoholism or addiction- or all of the above. My husband and I talked very seriously before we had children if we even should procreate. These are pretty horrible disorders. But in the bigger picture, all the pain that comes with battling a depressive fog, or the vicious fight to get sober- is what has made us who we are; and while we do not wish our children pain, it is their own beautiful journey.
One of my best friends has a little girl with DS and I feel that her lot in life might even be a better one that most. It's foolish to see the world as black and white when all there are are shades of grey.

Mardra said...

Yes. All of this and more.
Me too.

Ginger Stickney said...

You know I struggle with chronic depression, and I also have ADHD. I am learning to reshape how I live with, and think about these conditions. My depression is hard but I think it has feed my creativity, etc. I am not going to pretend it's a cake walk but I often wonder how many people really live lives without bumps, pain, suffering even. I sometimes wonder if that should even be our goal? But yes the world is much more complicated than we can ever imagine.

Thanks Mardra.

Matt Blaisdell said...

Ginger, I love this! So well said! (It also made me think of this touching short by Spanish filmmaker David Corroto (english subtitles) http://5th.cc/unamirada