I started my first blog years ago. When I first began homeschooling, I used blogging as a way to record the day to day with Beastie Boy. At the time, I was also in graduate school, and since so much of that was starting to leak onto the other blog, I started Green Tea Ginger, taking my name from a box of Tzao Tea. In the early years, the blog was often silly, sometimes academic but rarely personal. There was a reason for this. I published something, I can't even remember what, that upset H because he felt it was too personal. We fought. I got angry, deleted the blog, and sulked for a few days. If I couldn't publish what I wanted, if I felt constantly censored then forget it. But after the pity party, I realized that this was not my life alone I was recording. I didn't have the right, as an ethical person, to write about about a life shared unless all those who partook in the sharing had a say. And from that point on, I kept things pretty surface.
Until I started to work on my thesis which was on telling and how telling is not just about making sense of realities but also about shaping realities. Someone suggested I write my own stories as a way of experiencing this writing. This is when my blog took a turn toward the personal. And it's also began the moment when I started to have to seriously ponder the ramifications of tellings. Because telling is never done in isolation. Beyond just the obvious considerations of those whom share your life, there are broader societal issues about who gets to tell, and what gets to be told.
When I had Jude, and began to write about disability all these thoughts, planted so long ago, began to coalesce. Since leaving the academy, I had begun to write more and more about my life. About my children. I had tentatively told stories about my relationship with Beastie Girl 1. And I had been told I was brave for sharing those words. I'll admit to a little thrill at these words. Being called brave gave my sad insecure self a little boost. And of course like most of us I had been conditioned into thinking that telling all was a brave thing. But even then I was confused about why it was brave to say I had a shitty experience with my kid and I kind of messed it up. Not because of her but because of my expectations and how I reacted to what she was trying to tell me. It wasn't until I had Jude that I knew. Brave was the word claimed by special needs parents. It took bravery to raise "these" kids after all. Brave was the word used by others to mark "our" experience.
But is telling all really such a brave act? Or is it a dangerous kind of shaping? A kind of story telling that is making it okay to apologize to those who kill their children with disabilities? In other words are these narratives shaping the very experience of those with disabilities? Are these tellings shaping how society sees our children? Wonder if our eungenic problem isn't about abortion but about telling?
Let me back up. I didn't blog much for the entire year of 2012. Looking back I wonder why. I had a lot going on. I converted to Catholicism. I was pregnant. I found out my fetus had Down syndrome. But I didn't blog a whole lot. I wanted to. My impulse was to pour out all the shit I was thinking and feeling on this space. But I didn't. I was depressed. Had been depressed for over a year (and not because of Jude...depressions isn't always about having a "special needs kid."). What stopped me was that what I was experiencing was ugly and personal. Too personal to put out there. It didn't need to be put out there. It certainly wasn't going to help me nor was it going to help anyone else. After I knew about Jude, I worried that it would effect how others saw Jude, and I didn't want this to happen. What I was feeling was about my own shit not about her reality, and I knew how powerful words can be in shaping how people see others. Even in the depths of the worst of my feelings, I knew this wasn't even remotely about Jude but about me. About yucky selfish me who had some shit to work through.
What I have come to realize is that it is not brave to keep sharing the same damn narrative about grief and despair over a Ds diagnosis. It's not brave to perpetuate that you lose you child to Autism. Or that Autism is something to feel sorry for. It is not brave when your fear of something that you see as so different colors your entire perception of your child. Fear of difference too often leads to violence, and your supposed bravery of talking about that fear as something valid, as something that really is to be feared excuses that violence.
While you may have the right to your experience (and frankly I think is debatable..do you get right to be racist, ableist, sexist?), what you have to consider is that your experience is not your own. At least this is what happened to me. I don't get to tell Jude's story, or rather I could but if I do that I play into the power that already strives to keep Jude separate, oppressed different. I am creating a story that I certainly am involved in and will help to write over the years but it is not only my story and if I over share I do more to make it more my story than hers. When I stopped awhile back to think about what this means, I realized that this collaboration means me stepping back, about choosing to not let this be about me. This is about Jude, and about her right to be a fully human person in this world. This is about Camille and her right to be a fully human person in this world. I am their parent, their guardian, their teacher, and I have a choice. I can choose to tell a story that makes it about me. Or I can step back and wait until they tell their story (something which is happening beautifully with Camille). And while I wait, I will write not about the burden they are on our life (they're not by the way), nor about how they are super heroes. Rather I will continue to write about the injustice they face in this world. I will remember that the words I put out there are an act. An act that can build up the structures of power as they are, or an act that tears down and rebuilds.