Saturday, May 04, 2013

A Whole Girl In a Broken World

When I in college, I worked for a short time at a group home in our town. The overnight shift was a perfect fit because it wasn't too taxing and I was already working one job at the Women's Studies Center on campus. I could do my homework, and depending on who was on with me, even get some sleep. Our clients were adults with intellectual disabilities and most were nonverbal. I didn't see them much as they were usually in bed when I arrived. But I did get to know Pat. 

Pat was a forty-ish woman with Down syndrome and schizophrenia. She was the only person I had ever met who had Down syndrome. At first, I felt really uncomfortable around her. She would sit very close to me and stare at me. I have a really difficult time looking people in the eyes but she would get agitated when I didn't stare back. Eventually, I overcame my discomfort and started to like Pat.  I would paint her nails if she was up late while we watched TV. She liked to sit on the couch and hold my hand. 

When I met Pat, I was going through a rough time emotionally. I had fallen in love with the wrong person, again. And he had rejected me based on my looks, and had been upfront about it. I felt crushed all the time, like there was something sitting on my lungs and I couldn't catch my breath. I was unbearably lonely and felt unloved--worst I felt undeserving of love. Pat's hand holding became something of a soothing therapy for me. When Pat held my hand, I felt that maybe I did deserve love. I think from the outside it looked I was giving her something. I could calm her down and soothe her. I was able to bring back from the dangerous places in her mind. What others couldn't see was that she was doing the same for me. 

Pat was the first person I thought of when I was told Jude had a 1:5 chance of having Down syndrome. And I was scared. I had liked Pat just fine but I wasn't sure if I wanted a child like Pat. One day, after reading yet another "wonder story" about a kid with Down syndrome doing so much more than expected, I thought "Maybe Jude won't do any of those things. Maybe Jude will be like Pat." After I finally opened this discourse up, I asked myself "Will you still love Jude if this is the case?" The answer to that was pretty clear to me "Of course I would."

And I left it at that because what more was there? My child would come to me broken, like Pat, and I would love her no matter what. There was of course a chance ,a pretty big one, that she would be less broken. H hammered at this attitude. He asked if I saw my kids as broken and when I said of course not he pointed out that there were people who would see them in such a way because they were Hispanic. I resisted this and kept saying "But it's different." Jude was genetically broken in my mind. I imagined her as a jigsaw puzzle that made a baby but where you could still see the lines that made her not whole.

Last weekend, I was chatting with someone about Pat. She said to me "I think people can't get over that part of it. They love, care for, and truly appreciate various people with disabilities, but they don't RESPECT THEM." I'll admit I was a little touchy. I chaffed at the idea that I didn't respect people with disabilities.  I loved and care for my daughter. I had liked and cared for Pat but because I couldn't see the innate wholeness in them as they are, I wasn't really respecting them. If my whole goal was to fix them without appreciating the "perfect" human element in them as they were, I was missing a big part of their being.

Jude is not broken. She is whole and good and prefect. When I look at her I do not see the lines of a jigsaw puzzle that must be worried together so that when held in the right light the lines won't show. And by that extension Pat was not a broken person either. I don't know if she suffered. She didn't seem to suffer to me. She was a whole person worthy of respect and dignity. What I am coming to understand is that we all end up broken not because of the conditions of our bodies but because of the way the world (aka society) views those conditions. What is not whole is how we try to homogenize people based on an impossible model of "perfection."

Because here's the thing, you don't have to have Down syndrome to know this. You can be the poor fat kid in school like I was. The kid who tried so hard for a little while to fit in but never quite got it. Who always missed a step and exposed herself. People of color suffer in this country everyday. Young African-American men are killed because white people think they are gangsters or up to no good. Latino/as are pulled over again and again by the cops because the cops assume that all brown people are undocumented. Are these people broken? No but they are viewed as broken by a system that wants to fit us all into one mold.

And perhaps what we have to understand is that brokenness comes from being born into a world that is already broken from hate, war, disgust, greed.  Instead of focusing on  trying to fit everyone into a cookie cutter that looks like a white, middle class American person, we can focus on fixing this broken world. Instead of teaching our children how to be normal, we should teach them to love, really love in that hard, hard way that means being outraged, angry, and demanding.

The thing is that therapies and classes are not going to change the fact that Jude is different. And that's okay but difference does not equal bad, broken, or wrong. It just means different. When people tell me I need to do these things so that Jude will be like everyone else and not experience pain, I know better. There are awful people out there. They will make fun of Jude because she's different, and it's not going to matter how much she acts "normal." 

It's this simple to me: Our kids, Jude, the beasties, all of our kids, are not broken. The world is broken. I have a finite amount of energy. I can use it to pretend to fix Jude, or I can use it try to fix the world. I am sure I am aiming my lance at a windmill when I say this but I'd rather fight that windmill than fix something that is whole and perfect.

Perfect as is. 


jisun said...

Ah, now I see what you were talking about. We are all broken and all perfect, right? Beautiful words, beautiful Jude.

Down Wit Dat said...

Jude is very beautiful.
She is not broken, as that would assume that there is a "perfect" or "whole" state of being. There is not.
We all have differences and it is in these differences that we discover what it is to be human.

Ginger Stickney said...

Down Wit Dat: You're right to challenge my words "whole" and "perfect." I need to work on what I'm trying to say there. I think that perhaps it our difference that does makes us whole if that makes sense...or maybe the ways that we are all broken shape the way that we are whole? I don't know but I'll get around to it:P

TUC: I think for me that love/caring does not always equal can involve for example pity. It seems to me that the desire to fix someone does involve an element of pity, sometimes even a touch of scorn. What comes to my mind is the movie "Black Robe." It's about a Jesuit missionary who is trying to convert Natives in Northern Canada....the whole movie hinges on this idea that he loves them but he has to convert them, fix them...and because he sees them as incredibly broken his love is not mixed with respect. Does that make sense?

Jisun: Just what we talked about.

Ginger Stickney said...

And for everyone, this is very much a work in progress. Respect is an interesting work. H and I were talking about how people MLK, and Malcolm X were demanding respect along with equality. It's not about even the idea of "earning" respect. It seems in that case to be about the simple acceptance of someone's right to be who they are.

And I am thinking about love TUC right now because I think you're words are making me go in a new direction. Perhaps if we think of love on a much grander scale, it is about respect but I think that is a harder love to hold onto...I know not clear but hopefully that will come.

Ginger Stickney said...
This comment has been removed by the author.
Horacio said...
This comment has been removed by a blog administrator.
Horacio said...
This comment has been removed by a blog administrator.
Rachel Douglas said...

Not bad, broken or wrong, just an Individual. And an adorable one rapt that!

BLOOM - Parenting Kids With Disabilities said...

I really enjoyed reading about your thinking and how it's evolved. It was cool to hear about your friendship with Pat. I hope to hear more about Jude!

Lara Cetrulo Thomas (juliebugsmama) said...

Beautiful words. I think it's interesting you speak of not trying to make Jude "act normal" -- sometimes I feel a little guilty when I push for therapies for Jonathan, because while I want to give him the best shot in life to be as active and verbal as he can be, I also don't want to feel like I need to "change" him or make him "better" than he already is. I worry for what he'll face in the midst of mean, hateful people. I want to shield him from that as much as I can. But how possible is that, really? I guess raising our kids to be kind and accepting and loving to people of all sorts, all colors, all abilities, all economic backgrounds, etc. is a good start.

Ginger Stickney said...

I do therapies as well and I think a lot is intention behind them. I want Jude to not be in pain, to have options, etc. And perhaps some is how much as well. I don't want to do therapy all the time. I want to play with her, have her do things with us, etc. What I'm talking about mostly is that I want to use my energy not to "cure" her Ds but to make the world more accepting. I suspect that for too many people the goal is to make one's kid as normal as possible with little thought to how incredibly messed up society actually is.