Last summer I had sex for the first time in a long time. I couldn’t even figure out if I liked it at first, that’s how rusty I was. Having someone’s hands on me again came as a shock; I didn’t remember what a lot of the sensations felt like and wasn’t a fan of all of them, in the end. But I’ll tell you what did stick in my mind: when she looked me in the eye and said, “You have a vulnerability thing, don’t you?”
When you live in an uncertain body, you learn early on to mitigate risk. I’ve taken at least two big falls a year since childhood and never broken a bone, that’s how good I am at protecting myself. And as someone who’s the right kind of disabled — enough that you can see it (because able-bodied people always want our proof) but not enough to scare anyone — I am rewarded for that invulnerability. It’s a currency that allows me to succeed in a complicated-to-hostile world. And make no mistake: when you’re disabled, that’s where we live.
I don’t have the kind of body or life people cry about, really. I have the kind that makes them feel good — the “go get ‘em, kid!” kind. The “you sure don’t let anything stop you!” kind. So from my earliest days of physical therapy, I heard over and over again about independence. About how to ask for as little help as possible. Because I have a body that can make it, y’know? And somewhere along the way, I started to understand vulnerability as directly opposed to that independence.
The world doesn’t like disabled people or our bodies to be vulnerable. We prefer them inspiring, brave, tenacious, or at least trying really hard. If you wonder why that matters, let me remind you that not even two weeks ago, nineteen people were murdered at the Tsukui Yamayuri-en residential center in Sagamihara for the crime of being too disabled. Their attacker hoped to create “a world where people with multiple disabilities who have extreme difficulty living at home or being active in society can be euthanized with the consent of their guardians.” He didn’t even try to back away from those words.
You’re either Good Disabled and don’t need anything, or Bad Disabled and need too much. If someone decides your body is too needy or behaves in ways they’d rather not contend with, they can also decide to hurt or even kill you. (That’s a reality the queer community likewise knows too well.) So admitting vulnerability can feel like inviting any response from ridicule to danger, with no idea which one you’ll get. And if someone offers distance from that uncertainty, a guarantee of safety and belonging, you’re going to take it.
I need to call my “vulnerability thing” what it was: ableism. Internalized, sure, and deliberately kept that way (like it would only cause harm if it got out), but all the same. It made itself at home in me without any right to be there. And it stayed for so long because it looked like other things: perfectionism, intelligence, work ethic, high standards. The qualities we praise in achievers like me. I thought that by sealing every crack, suturing every wound, and always being fine, I could keep pace with the people who counted. I meant able-bodied people, of course. It is, after all, their world.
I built myself around the idea that being perfect would protect me. Perfect grades are simple. A perfect personality is easy enough to approximate as long as you never get angry. No one will notice that you never voice an opinion if they think you’re smart. So I quietly stuffed down the unpleasantries and learned to embody likability (a familiar maneuver for many women). And yes, these habits took hold because I was a woman in my early twenties as much as anything else. Nobody likes it when we ruffle feathers, regardless of our body type. But it’s also no coincidence that they ramped up after my spinal surgery in college, when my body reminded me that it has the final say no matter what.
That tells you what I was really protecting myself from. I didn’t want my body to matter — or, more accurately, I didn’t want cerebral palsy to matter. Because I assumed that disability only matters if it limits you. That’s the only way we ever talk about it, like the goal is for everyone to forget it’s there. I can make that happen relatively easily, so I thought I had to. I would not become one of “those people.” I would not be Bad Disabled.
I should have known better, especially as a queer person. No one can contain that much shame for that long. I came out thanks to a similar realization. But I was only in the closet about my sexuality for six months; it took me twenty-one years to acknowledge disability as part of my life, and another five to not hate myself for it. Ableism is that insidious, accepted, and pervasive. By the time you learn what it is, chances are it’s already a key component of your worldview. It turns you against your community and yourself. But other people will call it strength and success because that’s how it can appear from outside.
Unlearning those habits has not always looked cute. In the past year I’ve made more mistakes, gotten into more arguments, and asked for more help than in the previous decade combined. And no, the consequences aren’t all great; turns out, for example, that not every friendship recovers from a fight, sometimes people will hold it against you if you bail on plans because you’re tired, and it’s scary to admit when you’re not enjoying something in bed. I’m still learning to take the risk of telling the truth. But I’ve also learned that making myself vulnerable will not destroy me. And neither will giving cerebral palsy the space it always deserved.
Ironically, I’m at more risk than ever now by virtue of writing about my body on the internet. I also live away from home, without the safety of my family (which disabled people are never really expected to relinquish all the way). But the difference is that I’m not afraid. Vulnerability does not have to translate into anxiety. People like to praise it as some kind of secret ingredient in dating — like no one would ever be single again if they could “just open up more!” But I’ve found that being vulnerable strengthened my relationship to myself and my body first. Now I know my cerebral palsy matters, that it’s not something I can or should experience alone, and that independence and imperfection are not mutually exclusive. There is more room for pleasure and enjoyment in my life now. I get to be a whole person.
Recently I shared some good news with a friend and admitted that “it makes me really nervous.” She said “I think you’re just excited.” I ruled excitement out for years because its flip side is disappointment — which I didn’t want to leave myself open to. She’s right, though. I have a lot to be excited about. And while that’s scarier than the alternative, it’s also a hell of a lot more fun.