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.

About s.e. smith

s.e. smith is a recalcitrant, grumpy person with disabilities who enjoys riling people up, talking about language, tearing apart poor science reporting, and chasing cats around the house with squeaky mice in hand. Ou personal website can be found at this ain't livin'.

16 thoughts on “What I Am Is…

  1. This whole post is awesome, but especially:

    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.

    THIS. This times infinity. If you had asked me a year ago, I would never have believed that identifying as disabled could be this empowering, this freeing. I would have said it was an awful, horrible, limiting thing – and that is the lie that society wants to make us believe.
    .-= Kaz´s last blog ..Remember, remember… =-.

  2. meloukhia, when you said “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.” – this really resonated with me. My disability is invisible on most days, but on the days when my limp is more pronounced and my muscles are tight, people will stop me and ask “What’s Wrong?” I used to brush it off and say, “Oh, nothing’s wrong, I’m just tired.” But the truth was that my cerebral palsy had flared up but I was too ashamed to identify with having a disability. In the past year I have become more open about it and I agree, it feels very freeing.
    .-= FeministScribbler´s last blog ..Identity Matters =-.

  3. PTSD is what happens to some people who live through traumatic experiences. For some those experiences come in times of war. For others they come in childhood or marriage or driving or work.

    I’m actually getting to where I tell people offline that I’m disabled. Like the neighbor who saw me get out of the car and limp towards the apartment door. “Are you okay?” he asked. “Yeah. I’m disabled. I got a chronic pain condition,” I said. But big parts of it are still terrifying. I was telling the wife the other day I thought that since we were going to be looking at having to get assistance for me in the near future it might be time to start looking into how one might get diagnosed with an autism spectrum disorder as an adult (and I thought of you, Kaz). It was awful: I was half crying and the words wouldn’t come out. I’m going to need help from her and my family to do it and I don’t want to have to justify how I am to some gatekeeper and beg for an official mark of approval. But at some point I’m going to have to stop working and I’m going to need help from the ghastly broken toxic system we have in the US.

    You DJ, that’s awesome. 😀

  4. Oh, no, “booth” in this context actually refers to the stage management booth for theatre productions. I am hopeless with music (although I like bouncing around to it).

  5. Wow. Thank you for this. I’ve been thinking a lot about my disability of late, and this especially:

    / 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./

    really hit home. I’m one of the ‘invisibly disabled’ (a term I never knew existed until I came across this website, btw) and I’m still not certain where I fit in. But yes, THIS. Thank you.

  6. Man, this post totally hit home for me. I’m just starting to get to this same point in my own life and it’s SO COOL. Thank you for posting this, and an even bigger thank you to everyone who has made this blog possible. It’s helping me so much.

  7. Thank you for this. I’m only coming to terms now with the limitations I have because of PTSD (limitations I’ve had for a decade or more, but the PTSD was only identified about four years ago).

    I don’t identify as a person with disabilities, but this blog makes me think I might want to ponder that a bit. I do have to be careful with myself, and accept that sometimes random things might trigger me in ways I’d never imagined.

    Sounds like I have a lot more reading to do. A lot of it will be here.

    Again, thank you.
    .-= Jo´s last blog ..Compare / Contrast =-.

  8. Oh, wow. This is a talk I needed to have. Thank you for saying these things.

    “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.”

    This is how I felt when I finally got my diagnosis. All of a sudden a huge chunk of the horrible burden, the curse, of being a failed normal person went the hell away. Every day I would try to make myself act like a normal person, feel things like a normal person, behave like a normal person. And every day that trap would snap shut on my leg and hold me down.

    Knowing what I am, instead of being frustrated and miserable about what I am not, has been incredibly freeing. I’m not happy about it, sometimes I am still frustrated and miserable, but that’s because I’m frustrated by my limits, not because I feel ashamed that I have failed. It’s a subtle difference I never appreciated before.

  9. Yes yes yes! Thanks so much for this. This really resonated with me as well. I am a queer woman who sleeps with straight non-trans dudes sometimes, a fat lady who can still mostly shop in straight sized clothing stores and a person with a disability that is invisible most days. I so often struggle with feeling “not enough” of my fat/queer/disabled identities even though I am fairly active in these communities. For me it comes down to the fact that I am the only one who can define who I am and as long as I am taking on these labels from a genuine place of identification (as opposed to appropriation) no one can tell me otherwise.

    I think this also is a great place to acknowledge intersectionality. There is no universal experience of disability. Disability looks and feels very different for poor people than it does for rich folks (etc. etc.) and the more identities you add to the mix the more complicated it becomes. As all of our identities are affected by all of our other identities there is no single shared experience that legitimizes these identities.

    Further, marginalization has a lot of nuances that I would guess most of us that read this site have some understanding of. Let me use my fatness as an example. I am a size 14 right now. Do I have to deal with fatphobia in the form of a doctors telling me to lose weight? Yes. Do I have to worry that I wont be able to fit into the seats when I attend a concert? No. Just because I am fat does not mean that I have had every experience of every fat person that has ever lived. But I have had experiences that would not have happened to me if I was thinner.

    As always, great post meloukhia and all of the comments so far have been awesome. So glad y’all exist!
    .-= KatieT´s last blog ..Dis/ability and Capitalism =-.

  10. This is a very interesting post. My expeirence is ironic, in that the same people who tell me to accept my visible disability, tell me not to identify with my invisible disability. It goes like this: if I just realized how much my visible disability was impacting me, I’d know that I don’t have an invisible disability. Well, I do, but does it really matter which diagnosis is leading to which exact impairments?

    Also, it is often assumed that acknowledging a disability is the same as constantly crying over your limitations. (As if all limitations experienced by a person with a disability are directly due to that disability, anyway.) If I write on my blog about disability issues, even if it isn’t about my own experiences, some people say I am “obsessing ove rmy own problems”. Well, I don’t see why writing about disability is obsessing over problems.
    .-= Astrid´s last blog ..Autism Reality Check: There Is No Cure =-.

  11. I’m a flitter – or, at least, for a long time before things got worse, I was – and there is so much about this post that speaks to me, that is just, beyond awesome.
    .-= NTE´s last blog .. =-.

  12. Astrid – I get that too. Yeah, thinking about/talking about problems I face because of my disability does not mean I am obsessing over it.

    It’s really annoying, isn’t it? Especially when the person you are talking too then obsesses over their own problems.

  13. Yes! It was only a few months ago that I wouldn’t crawl up stairs, and I didn’t have the walking stick that I needed because I didn’t want to go and buy one, and I felt I needed to walk everywhere (and so just didn’t go out) rather than spend money on buses… Accepting disability, whether chronic or not, is so so helpful to /actually/ coping.

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