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.