Monday, June 10, 2013

The Simple Humanness of Jude

Lately, I've been over-run and over-comed by stories of ignorance and cruelty concerning people with disabilities. Many times these stories feature people who have "good intentions." People who want us to love babies with disabilities DESPITE their disability. Sometimes though the stories are darker: people being beaten by the police, or by hateful youths. According to local politicians people with genetic differences are the physical results of sin.  I read about how people with disabilities are a drain on society and this usually leads to conversation where people with disabilities are pushed to demonstrate their worth. I am the shoulder many friends cry upon as they battle with their local school districts to get an education for their children with Down syndrome. I am a witness to the struggle for the recognition of humanness for a group of people who shouldn't have to fight this war.

But I am also a witness to the everyday humanness of my own child born with Down syndrome. I have often written about how I was devastated when I first learned that Jude had Down syndrome so I won't rehash those feelings. But I do want to emphasize that all those fears involved an inability to see my child as fully human, as worthy, as quite simply part of the humanity in which we all live. Love does not always involve respect, I think, so while I loved her greatly, I struggled, initially, with not seeing her as complete or whole.

I asked H the other day why he had never been upset about the Ds, and he said "This is a good example of how theory shapes life." I thought a lot about this last night as Jude nursed to sleep and then cuddled against me. Earlier in the day when talking to my mother about therapy, I had expressed to her my frustration with the end goal of trying to make Jude fit some mold. I said "You know Jude is pretty much following the same pattern as the rest of the kids just a bit slower." And I realized how Jude really was just another beastie albeit with some different considerations but different considerations is something this family is used to. Meanwhile, H has introduced me to things like decolonization, and I start to find my thinking shifting. Like H my theory is starting to shape my life.

Every day I experience Jude not as someone who is in need of repair but as someone who is just a baby. I feed her, snuggle her, play with her, get annoyed when she's yelling for more attention. I bathe her, rub her with lotion until she smells like a tropical beach, and dress her. I fuss over her hair. Take millions of pictures of her because she's so damn cute. I bring her shopping wearing her in my sling, I kiss her hundreds of time. I leave her on the floor so her siblings can play with her. I forget to do tummy time. Sometimes I worry about her future, about the tests we need to do but in my world that is not a new experience. I worry about all my kids. If anything through Jude I've learned more about living in the present than I ever have before. But what it comes down to for me is that Jude is different but that difference does not equal a whole separate category outside of my other kids. They are all different in many ways, and I've had to adjust how I parent them because of these differences. Those adjustments didn't make them less human though or less worthy of dignity, respect, etc.


You see I am starting to see that if we can shift our thinking about what it means to intelligent or valuable or worthy that we can shatter the stereotypes that hold so many of us in places of subjection. Because of books like Local Histories/Global Designs, I am challenged to rethink what I held as valuable. I am reminded that there are equally valid but different ways to view and to understand the world. Jude's going to see the world differently than I perhaps but that doesn't mean her way will be less. Perhaps her way is better. I don't know. But I know it's as worthy as attention as any other way of being in this world.

This is important to what I talked about above. Our kids are joining the great march for Civil Rights traveled by so many others: African-Americans, Latino/as, Native Americans, Asian Americans, LBGT people, people with disabilities. We are at a crux, I think, where we MUST change how we see and treat difference. This is WHY People First Language is so vital. If we don't change the way we speak about people with disabilities, we are not going to change the way we think about them and thus the way we treat them. Language and theory and experience are thread together in a complex weaving--to take one thread out is to dissolve the whole pattern. If we want our children to not be beaten by the police, to not be seen as object examples for a second class kind of love than we must work on all of these things at once.


19 comments:

KathyR said...

Another basic thing is that we need to get behind the idea that their lives have value. Unfortunately,even people who insist on person first language will support the right to choose whether or not babies with Down syndrome should even be allowed to live. Unless we can come together as a community to advocate for the basic right of people with Ds to be born,unless we show by our advocacy that a diagnosis of Down syndrome should not be a death sentence to an unborn child- how can we expect society to value them after they are born?
Seems pretty basic to me. If society sees babies with Ds as disposable at will, how can we expect them to treat children or adults any better?

Horacio said...

Kathy- At the risk of starting a circular thought (it's not really), as this could be a problem of 'the chicken and the egg'... I wonder how many people who are 'pro-life' are involved in activism that ensures the basic human rights of the population already here in our society?
The ethics of violence/war do not start in the womb-- and are certainly not isolated to that space. The ethics of violence/war is pervasive: criminalization of undocumented immigrants, death penalty, support for the police/military/surveillance complex, support (or indifference) for capitalist ventures destroying communities within and without the US, etc.
It seems to me that de-linking one form of violence (abortion,etc.) from the ones I stated above, or placing a hegemonic emphasis on it, is risky as it creates a blind spot for an integral activism that truly advocates for life and peaceful coexistence.

Extranjera said...

To me it seems that the only way to ensure that everyone understands that people with Down syndrome have value and that their lives have value is to treat people with Down syndrome with respect, to award them the dignity awarded to everyone else, and to speak of them as unique individuals, not as a separate homogenous group somehow unilaterally under threat that can only be saved by... how? Making a woman's basic choice illegal? Seems incredibly backwards and oppressive to me, when we can do so much to augment the level of knowledge regarding Ds, and thus truly, as you say Ginger, let the theory shape a life, as well as use meaningful inclusion to foster true acceptance.

As always, great post and important message.

KathyR said...

Since the post was about Down syndrome and person first language, that is what I was discussing. From my own personal experience with them, many people who are concerned about the high rate of abortions after a diagnosis of Down syndrome are involved in ongoing activism to ensure quality of life for all individuals with Ds. We do not think that our job is done once the child is born. And from a personal standpoint, I have not seen much cross over action to the rights of individuals with Ds from the other issues you list (immigration, death penalty, etc,) so I am curious why that would be even be brought up? Is it always a case of 'all or none' for the issues you cite? Are you saying that one cannot be pro life without supporting all of the issues that you listed?

KathyR said...

Since we are starting with the premise that the child in question is a 'wanted child' until s/he is diagnosed with Ds, then, yes, that is important distinction. The child is not wanted *because* of the diagnosis. And when we say, 'hey, that's ok-I completely understand why you wouldn't want one of those kinds of kids', we are devaluing their lives before they are even born. How is that respectful?

Ginger Stickney said...

I think that if you're going to latch onto the pro-life label then yes you should totally be supporting those actions. To assume that the only way to be "pro-life" is to be an antiabortionists is incredibly arrogant and insulting to those of us who support a wide range of life sustaining activism. I also don't choose my activism based on who crosses over. I see where there is injustice and I make an effort to combat it.

You know I never considered an abortion. Ever. But I wasn't happy about my pregnancy either. I thought Jude was going to be a burden. Not believing in abortion as an option didn't change how I saw Ds. That came with education and experience.

And frankly, this is the last I"m going to say on this because this post IS NOT ABOUT ABORTION. It's about creating a culture where my child, WHO IS ALREADY HERE, will be treated with dignity and respect. I'm not interested in joining your movement because it leaves a lot of voices. From what I can see the antiabortion movement is usually conservative and Xian. This means they shut out gay voices, feminist voices, undocumented voices, poor voices, etc. When I meet people who tell they're prolife and then rant about social welfare, etc, I find that a little hard to swallow.

I have no clue where you're coming from but I can tell you this that I will never join a movement that doesn't allow everyone a fair shake.

Ginger Stickney said...
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KathyR said...
This comment has been removed by a blog administrator.
Ginger Stickney said...

And I'm all for a conversation about creating a culture of respect here and now. If you can't do that from here on in, I will delete comments. If I wanted a debate on abortion, I'd have posted on abortion. You are welcome to your activism as I am welcome to mine.

Ginger Stickney said...

There are plenty of places to debate this issue Kathy. I am not going to use this space for that conversation because frankly it's not the place. Maybe some day I can write about my conflicted views about abortion but I am not in that place. I don't desire to be harassed over what I think is a good piece about concern for how my daughter is treated in the future.

If you go over to IDSC Facebook page there is a rousing conversation on what you're discussing. I'm in fact involved in that debate.

Sadly for you this blog is not a democracy. It's MY space, and I can choose to monitor a conversation in such a way that it is productive.

6:01 PM

Amy Dietrich Hernandez said...

I was trying to make this point the other day on an IDSC post. I get aggravated with those that think being pro-choice means you aren't really an advocate. Um, excuse me? I wish people would see that we are all advocating in our own ways. We take different angles to get to the same center of acceptance.

Horacio said...
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Horacio said...

Extranjera-Agreed on everything, esp. the respect.
Ginger- Yes on the creating that culture, that world.
Kathy- Yes, in order to be truly coherent with the label 'pro-life' one should subscribe to ALL of the issues that have LIFE as its central demand: immigrants basic human rights get constantly abused, the same goes for gay/lesbian/transgender rights , military personnel dying for economic/religious/ ideological interests of the few in this country, the thousands of lives of people killed by the military abroad, peoples lives consumed to nothing, exploited for profit by multinational corporations...
So yes, if we are going to advocate and become an activist for one cause, the least we could do out of coherence and respect is to adhere to all the others causes listed here (and of course there are many more).

Horacio said...

I agree Amy and I hope you saw that some of us did go over to that conversation as well. I don't like being informed that there is only way to advocate. It's demeaning to all the hard work so many of us do.

And right on H:)

Rachel Douglas said...

I just loved reading bout your baby and your love affair with all your kiddos.

starrlife said...

I always find that when I try to get to attached to ideology I get angry and frustrated, it's like chasing Amy. Constructing and deconstructing but never finding that sweet spot of just living. That being said I agree wholeheartedly with most of you and as always love your passion and ferocious transparency even as it sets my Libra scales wildly swinging. And of course hearing about your process with your children too!

Patti Saylor said...

Gunger, first I love being a part of your family albeit your FB family. I love your commentaries on life with the beasties. The other day you said something about letting people have their own parenting experience and never pulling rank. I agree ( and here's the but) I have been thinking about the same issues you grapple with for over 27 years. Of course Jude is every bit as worthy as the other beasties and every other human being. Never let any other thought creep in ever! Many people don't know that because of true or chosen ignorance. I have found it necessary to show people and not simply tell them. Actually Ethan showed people himself. Jude will capture the hearts and minds of many as she lives her life. The fight might be more about removing limitations of our funding and service delivery system for the (choke, sputter, puke) disabled. Supporting Jude to have the life she wants will serve to change the theory in the minds of others. I just want to hug that baby girl and give her beau coup kisses!

Patti Saylor said...

Oh great I called you Gunger! Ha! I'd say I'm sorry but it might just fit...I can tell you have a spirited personality!

Ginger Stickney said...

I am wedded to the ideology that my child is fully human, yes just as I am sure that this is connected to the language that surrounds her. Yes I am angry and frustrated and that fuels me to fight for change. I am not frustrated with my thought process but with how the world sees difference. I'm comfortable in this space and find there is plenty of room for living.

I don't think we disagree here Patti. I respect the work you have done and the battles you have thought. But that doesn't mean there isn't room for new ideas right? It's why I don't pull rank. But I do think that my experience in other areas of difference lend something important to how I see and parent Jude. Jude is out there everyday already and I plan to raise herbals I do all my beasties.


I have to admit this feels a bit like a spill over from. Y split with the other bloggers and the fights from Meriah's blog. I wrote this post months ago.