What I Am Is…
For some reason, all of my most intimate and personal conversations in the outside world take place in cars. Which is kind of odd, now that I think about it, because in a car you are captive with nowhere to go when things go bad, and sometimes they do. I think it must be all the windy roads without radio reception here; there are long spaces of silence that sometimes get filled with words on car rides. At any rate, the environment of the car feels almost like a confessional to me, and sometimes when I am thinking things out, I go for a drive somewhere, play some loud music. Think.
My point is, I am imagining that we are in a car right now, you and I, maybe it’s early morning, the mist curling off 128, we’re in that curvy stretch before Navarro, before the straightaway where you feel for a moment like you can see forever and you are flying.
Because, you see, what I am is, I am a person with disabilities.
And it has taken me so long to claim that identity, because of so many things, that I feel like whispering it instead of shouting it. Sometimes I feel like I can’t even really claim that label. I’m not, you see, “out” in the outside world, because every time I try to articulate what I am, I get blank stares of judgment. I don’t “look” disabled. I’m not “disabled enough.” I’m trying for attention. I’m not trying hard enough. Other people have real problems. Can we go, already?
It’s exhausting, right now, because I’m living a dual life. One part of me is still that Old Me, insisting on being able-bodied and neurotypical and budgeting spoons (but they’re not called spoons, it’s not budgeting spoons, I’m not doing that), and pretending that everything doesn’t crash down around me six times a day. That’s the version of me that doesn’t get up and leave a room when someone says “I didn’t really see what the big deal is with the mental illness thing in ‘Belonging,’ it was awesome that Topher could fix her.” That’s the version of me that lies when people ask why I wasn’t at an event, that makes up excuses when people ask me to do something, that laughs off those awkward things that happen, those aren’t because of my disabilities! I’m just a klutz! I’m just not thinking clearly! Haha! Can we go now?
One part of me is me, this me, the me right here, right now. The me that is on this website. The me that is out and proud about disability. That is confident. That has taken on this political label because the personal is political and the political battleground is my own body. That’s the me who feels awed and gratified when other people say that they share my experience, when people say that I have given them courage, the me that sees these awesome and wonderful and amazing women I am working with and this terrific community that are building together and goes yes, yes, this was necessary and it is good.
You don’t need to know the specifics of my disability. To see my medical chart. It’s enough to know that I am disabled. You accept me for who I am, for this label I have taken on, the one that says yes, people do share my experiences. People like me are oppressed because we are the way we are. It took becoming very exposed and being very public for me to own this identity, and when I took it into my hands, it empowered me. Because suddenly I was not alone. I thought I was alone. I thought I would always be alone. But instead, for the first time, people welcomed me with no questions, no judgments. They welcomed all of me and they keep doing it, every day, and it almost seems unreal.
I spent so many years fighting it. I felt ashamed of my disabilities. I felt like I didn’t belong anywhere at all; I’m not like those visibly disabled people, the ones with the wheelchairs and guide dogs, but I’m not like those able bodied people over there. I’m not normal. I don’t think the way they do. I can’t. I’ve tried. I don’t fit there. I can’t do the things that they can. I can’t. I’ve tried.
I don’t need ramps, so I’m not disabled. But I do need grab bars. I don’t need to use augmentative communication, so I’m not disabled. But I can’t communicate like other people. I’m gifted and talented and smart, everyone says so, so I’m not disabled. But why are some things so hard? I can wear glasses to correct a lot of my vision problems, so I’m not disabled. But I’ve lost most of the vision in my right eye and have no depth perception. There are no glasses for that. I seem so personable sometimes, so I’m not disabled. But why am I terrified on the inside whenever I leave my house?
This is the world I live in, the world in which people like me aren’t disabled, and are disempowered as a result. To own that identity is terrifying, still terrifying, every day. When I see people on other websites refer to me as a person with disabilities I jump and say “no I’m not” because that’s what I have been trained to say. Just try a little bit harder. You’re not different. You don’t deserve any special treatment. Your conditions are manageable, some might even say controlled. Those physical problems you have, it’s because you’re not trying. Those cognitive ones, you’re clearly just tired or distracted. It’s not disability. Those things that happened to you? Things like that happen to everyone and they’re just fine. You don’t need therapy. You don’t have PTSD. PTSD is what happens to people who go to war.
That day that I picked up my label and started wearing it, that day was huge. It was tremendous. It was the day I admitted something publicly which I had thought about privately. And that was the day when I realized that there were all these people like me, people who understand me, people who get me. I don’t have to explain things to them, to you. You get it. And it’s so freeing, MY GOD, it’s so freeing and so terrifying, it’s like the night I called my first show and I knew it was nothing but me all the way to the end, all me, everything on my shoulders, but the power. The sense of rightness, of fitting in, when I first said “I am a person with disabilities,” it’s like that first time I sat down in the center chair in the booth and put on a headset and said “let’s get this party started.” It’s a tremendous responsibility, but it’s the right responsibility, so it feels like nothing at all, it feels like wriggling into a bed with freshly laundered sheets on a crisp fall evening.
FWD gave me the ability to do that. The place to do it. The place to fit in. And it is so unbelievably exciting to see commenters exploring their own identity, to hear privately from people who say that they are like me and never thought of themselves as disabled but realized that this label, “disability,” it’s for them too, and how freeing it is. It’s so amazing to engage with readers with visible disabilities who have no choice but to wear this label, who have been devalued and marginalized because they are identifiable and public, every moment of every day. And to talk with readers who bridge the divide between visible and invisible, flitting between these statuses depending on the day and who is observing. To explore the diversity of experiences that the readers here talk about. This is not a conversation I could have been a part of without owning my disability status.
Some temporarily able bodied people talk about disability like a burden, a curse, a trap, a prison, but, for me, it’s not. Denying disability is the burden, the curse, the trap, the prison. These disabilities are part of me and part of whom I am and they belong here with me.