"When we come up against the limits of any epistemological horizon and realize that the question is not simply whether I can or will know you, or whether I can be known, we are compelled to realize as well that 'you' qualify in the scheme of the human within which I operate, and that no 'I' can begin to tell its story without asking: 'Who are you?' 'Who speaks to me?' 'To whom do I speak when I speak to you?'" Butler 134
When I look over the ways we tell stories about having children with Ds (or any disability really) there appear to be two narratives. One says "Life with a child with disability is horribly hard. It's a life filled with drudgery, and hardship. Life with this child even when you love them is beyond stressful. It pushes you,the parent, into awful acts." With this story comes a kind of strange admiration borne of pity. Mothers with "normal" children can look at your story and feel good about their own "typical" kids. They can think things like "Oh you are so strong" which leads people to think that only "special parents" can have "special kids" and they are not that special. Our children become seen as burdens while, we, the parents are portrayed as beyond heroic giving all our actions, no matter how cruel or senseless, a validation.
In the other narrative is the story of another kind of specialness. Your child is an angel. A miracle. God's love embodied in human form. This story says that our kids love better than other kid. They are sent to us to teach us how to be better humans. The extra chromosome endows them with super powers usually of love. This is the story that tells us that kids with Ds are "sweet but stubborn." The children in this story are always photo shopped beautiful. Perfect and angelic as they gaze out at the viewer. Passive. These are the children people exclaim over but that they don't see as quite human. These children do not grow into adults but are frozen in the world of a glossy 8 X 10. When I found I was pregnant with a child that had Ds, I found these two stories. There were very few stories where parents were saying "Eh I got a kid." I remember after Jude was born I found the blog 21 + 21 + 21 = ? and fell in love with the header on her blog "We're not sad and life isn't hard. There's a lot of love and that's the way it's going to stay." Here was a narrative that was fitting what I felt about Jude. That fit what was going on in my day to day life. I didn't want to be sad about Jude having Ds. I wanted our life to just keep being our life. A life filled with chaos and beasties. A life where we sometimes felt like yelling in frustration. A life that was often filled with joy but sometimes felt like drudgery because you know after washing the 100th dish of the day it's hard to muster up enthusiasm. Basically here was someone who was saying "This is just life." Down Wit Dat wrote about this as well...about the need for a narrative that showed just how normal life is for her family.
What I would suggest has happened for us is that we hit that horizon limit. We were faced with stories that did not reflect the "you" in our lives, and we had to write something new. We had to find others who were writing something new. There had to be another story because the "yous" we were seeing were not the "yous" in our lives.
I want Jude to find the humanness of herself in the story that I tell about her. When I limit her to a stereotype on either end of the spectrum, there is not a lot of space to be human. In the narratives above, she does not qualify as a human. She qualifies as a flat representation denied the complexity of life. Right now I am the bearer of Jude's narrative because she is a baby and she can't give an account of herself. As she grows, she will ask me to tell her stories as all my children have asked. I will tell her stories about her fits of anger and frustration after getting stuck under the couch again. I will tell her about how she began to sing to me at ten months, and how it slayed me utterly and totally. These stories will accumulate as she gets older, and some day her voice will join with mine in the telling until one day her voice only will stand. But what will remain, I hope is the sheer normalcy of her life. The simple fact that our life did not get harder when Jude entered it. It got better in the sense that all of our children added joy to our family but it was not a miracle sent from God either.
The simple fact is that Jude needs a story about acceptance and that is why I write about Ds. I realized the other day that while I understand why people use the word awareness, I find it insulting. What are we raising awareness about anyway? Do we really need to raise awareness about this third chromosome? Why should we? Jude is a human being and that is really all one needs to know. Her medical conditions or lack of them are not something that anyone besides I and her father need to know. We all have a list of potential health crisis due to genetic material and yet we don't advertise them to the world. I owe no one an explanation as to Jude's appearance. We assume a difference and we seek to narrate it. This what I see in most cases of awareness. It is not what I desire for Jude.
Instead I want acceptance. I want Jude to be seen as she is which is a human being. Acceptance means being able to give an account of oneself that recognizes a relationship with humans. Jude and all people with intellectual disabilities deserve a story that includes failures, successes, giving up, not giving up, being sad, being happy, great joy, great sorrow, and most importantly real relationships with the people around them. Relationships that allow them to be both a "you" and an "I."
And because I want this real acceptance--not a tolerance, not an awareness--I am willing to make a stand. It's easy to say the narratives that we tell our own. We lay claim to them. We say they are our accounting and that we have a right to share those stories. But here's the problem. Those stories also involve a "you" and if that you is being denied a chance at humanity is it ethical to share your story? Is it ethical to continue the narrative that dehumanizes? I have said it before and will say it again "Yes you have a right to your own emotions but you don't not have a right to let your emotions spill into the way another person is painted to the entire world." In our world of tell all memoirs we are reaching the peak of what it means to share, to own our experiences and our emotions. We throw out to the glare of the world everything. And sometimes we forget that there is more than just us in these stories. Giving an account of oneself must always include the others with whom we create. So while I may not be able to tell you what to write, I can critique your story. I can challenge it. I can tell another story. If that makes me divisive so be it. For my daughters' sake, for my son' sake, for the sake of those with disabilities of all kinds, I will remember that when I given an account of myself I will always remember that my "I" was not shaped in isolation.
Perhaps most importantly, we must recognize that ethics requires us to risk ourselves precisely at those moments of unkowningness, when what forms us diverges from what lies before us, when our willingness to become undone in relation to others constitutes our chance of becoming human. To be undone by another is a primary necessity, an anguish, to be sure, but also a chance--to be addressed, claimed, bound to what is not me, but also to be moved, to be prompted to act, to address myself elsewhere, and so to vacate the self-sufficient 'I' as a kind of possession. If we speak and try to given an account from this place, we will not be irresponsible, or, if we are, we will surely be forgiven." Judith Butler Giving An Account of Oneself 136
[Originally appeared on Green Tea Ginger]