Monday, April 28, 2008

Say what you need to say

...so goes the new John Mayer song, over and over. And over. I have a (put on your disbelief suspenders) friend (no, that's not the disbelief part) who periodically feels compelled to give me Cassandra like warnings which turn out to be right. So the day my son came home with a 103 degree fever and the school lost him, I was prepared. When my sister had a cancer scare and they had to crack her ribcage open to get the tumor, I was prepared. When a wolf came in sheep's clothing, when I needed to make specific home repairs, when a family member made a major confession, I was prepared. I've learned to listen to him, and I've not known him to be wrong, though sometimes the timing is slightly off. So he warned me in November that I would get sick. Although he didn't say how sick, he said to be prepared to clear my schedule. Sure enough, though I didn't think he meant for so long. A few days, maybe. He made a few other strong predictions about life changes. Who knows. He moved across the country a few months ago. I'm missing talking to him and just thinking about what he said today. (It's platonic, he's gay, for those thinking, uh oh.) There are a lot of friends I miss talking to and don't see much anymore.

Continuing to think about the song, or the phrase rather, since it's more of a phase than a song that circles round the head on infinite loop, I'm not one of those people who can say what I need to say, or at least not enough or not anymore. And I find myself shutting down more and more, a shadow self that cannot say what I need because of the open warfare on people with disabilities. If only disability were a flower right for all zones. I need a climate where you will not put your newly crawling baby behind my scooter on the floor when I'm blocked in on three sides and can't turn my head to see her. I need you not to park against the only curb cut. I need you not to be openly hostile when I make a request for reasonable accommodation. I need you to understand when I can't show up that I am not being lazy, but hurt because I cannot be there. There's too much that wants to choke us out.

In contrast, my friend trusts himself. He knows when he's right. He still says what needs to be said, even when people tell him he shouldn't, even when he's right.

People think we the disabled are the same, only with wheels, but it's not true. I'm not the same as you, only with wheels. It doesn't compensate for what I can't do, for who I can't be, for what I might have been, for the three other career paths I'd have chosen first. It doesn't allow me to help family members enough, to babysit, to lend a hand. That's what's most difficult sometimes. My wheels won't help me hike a mountain, and damn it, that's what I want to do. A different John Mayer song, "Your Body Is a Wonderland," always made me squirm since my body is a wonderland for all the wrong reasons, but I'm learning to appreciate it. I mean appreciate the song, for all the wrong reasons, not my body, to which I feel less and less attached. I only know it by its pain. By its pain, by its wrongness, by its interference, not by its movement, that's how I recognize myself, what makes me embodied. No longer defined by what I do, but what I am. In not doing, I lose myself except in those short moments when touch steadies me, reminds me that there is more than this thin cutting wire of pain, of no breath. Your hand on my back, it steadies me. Your voice, it brings me back. To this body, to this. To a climate that gives me permission to live.

But how often do we leave ourselves in situations we should not because we don't want to speak up, where people harm us rather than help us, kill us rather than cultivate us? In a volunteer job where a friend and I were disrespected and devalued, spoken to rudely, it took us almost a year to decide we'd have to quit or be more demanding about change. My friend reminded me that if the job were paid, we'd never have put up with it and definitely shouldn't subject ourselves to such stress in a volunteer capacity. So we did what we needed to do. Similarly, I once went to a physical rehab specialist about five years ago. He recommended some of the same procedures I've recently had, but I recoiled at the idea because of his demeanor toward me, his insistence that I move in a way that could have given me a fracture (in a way that his own PT and the endocrinologist cautioned me never to do), and unnecessarily causing pain. On one visit, he brought a med student with him whose techniques were the same, but who didn't hurt me, and an epiphany occurred. I didn't say what I needed to say, but I did what I needed to do and didn't go back.

I wish I could leave behind what needs to be left behind more often. I am getting practiced at leaving, but not practiced enough. There is so much that we can leave behind, but we fear the change more than anticipate the good. Too often I wait, too long I wait. I wish I weren't so sensitive about disability, I'm so damn tired of it all. Old friend, there are a few things I hope you're right about.

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