On Vulnerability as a Disabled Person

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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.


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Carrie's body is weird and she's making that work for her. She lives in Los Angeles, where she does a lot of crossword puzzles and longs for a squished-faced dog. Help her get better at Twitter.

Carrie has written 59 articles for us.

21 Comments

  1. 0

    Carrie this was such a wonderful read. The good or bad disabled archetypes really resonated with me, as did your words on identity – the time it takes to come out as queer, unevenly paralleling the time it takes to acknowledge and accept disability within your identity. Thanks for your vulnerability in writing and sharing!

    Cheers!

  2. 0

    Carrie, thank you for your beautiful writing that articulates your astute insight so well. I related so much to this as I grew up with depression in a family where the main code of conduct was along the ‘never let them see you sweat’ line of that old deodorant commericial. Never show vulnerability, never show weakness, and never, ever ask for help (which only proves you are both vulnerable and weak).
    On the outside, I was overly stoic and self-sufficient to hide how I truly felt inside. To this day, I am still skittish in sharing any vulnerability with others or asking for help. It takes a lot of effort to unwork the wiring that keeps me a strong robot, and to act like a human being — with frailty and needs — and it’s scary, but as you said, taking that risk can be “a hell of a lot more fun.”

  3. 0

    As always, Carrie, your writing cuts me to the core and I love it. I became disabled in my mid-20s, with a relatively treatable relapsing/remitting disorder. Most of the time, I am mostly ok – “good disabled.” I have been struggling so hard with internalized ableism, where I have come to accept my treatment regimes and new bodily rhythms, but when my body really gets rough I still dissociate from it.

    I have learned that I have to ask for help sometimes, and I’m getting better at it. But every time I do something as simple as ask somebody to hold a door or open a jar for me, there is an internal battle-dialogue running in my head in which I angrily defend my rights as a disabled person. I used to think I was running these dialogues as preparation for the moment somebody refused to recognize my disability (I’m young, my disability is mostly invisible, and that happens frequently). But I do it when asking friends and family too. Now I realize that I’m arguing against my own ableist voices, my fear of vulnerability. Who do I think I am, asking for help, when I could *really* just do it myself? (slowly, with huge effort, and with exhaustion and pain later, but still…)

    So I am getting better at accepting help, but only because I argue to myself that I deserve it every time. That’s a lot of work.

    I also realized while reading this that back in my able-bodied youth I was more emotionally open and vulnerable – I used to dive deep into friendships and relationships instantly. But my current partner had to fight his way through some walls that I didn’t know I had built up – which had everything to do with imagining that I should stand all on my own despite disability. Somehow in being forced to admit physical vulnerability over the years, I had cut myself off from emotional vulnerability to compensate. It’s been terrifying letting that part of myself open back up. But as you write so beautifully, it’s also a hell of a lot more fun.

    Thank you, as always!

  4. 0

    I am so terrified of the Good Disabled/Bad Disabled dichotomy that I’m the first person to point out my limitations and turn them into a joke.
    As per usual, your writing speaks to the not-so-secret fears that live inside me. Thank you, again and again.

  5. 0

    I think I say this on every Autostraddle article on disability, but thank you so much for having articles around disability! As a bisexual disabled women, I so often feel those identities can’t exist together, and having a place where they do is beautiful! Keep it up!!

  6. 0

    Wow this is so relevant to my life rn. I’ve had a fairly intense form of epilepsy for the past two decades of my whole life but for one reason or another I’ve always been expected to just suck it up. It’s sort of been a mixture of ‘inspiring disabled person’ and ‘your disability is too invisible to be real’ type thing. I just sort of played into it, so I’ve never asked for the disabled seat on the bus when I’m feeling dizzy (especially because I’m ‘young and spritely’), I lie about being sick if I have to turn down plans because ‘I have to work’ sounds much more convincing, I don’t correct people who think I’m drunk when I can’t find my balance even if it’s 10am Tuesday. I’ve spent my whole life fighting the stereotype of the ‘dumb epileptic’ so now I have a life even most able people don’t. But tbh being able to get things that a lot of able bodied people can’t just makes my disability even more invisible. Like I have my own apartment and am about to finish a dual legal honours degree, so how can I have done that with a handicap right? I dunno it’s a giant catch 22, you can be inspiring, but only inspiring to a point because we want to know you’re struggling. But don’t talk to us about you’re struggle tho.

  7. 0

    This is one of the best I’ve read on this topic, such an astute political analysis…which I think helps to survive in our culture.

    Thank you. It’s helped me think in the context of my work on death, dying and sexuality

  8. 0

    This is a mind-blowing article. I want to share it with everybody I know. I want to share it with nobody and protect my secret that I didn’t even realize I had until I read this article. I have totally been raised with a “good disabled” mindset, and I never really thought about it as a bad thing until I read this article. I’m still processing what I just read and how I feel about it. Thank you for your insights into, well, me!

  9. 0

    You wrote you’re still learning to take the risk of telling the truth, but how much? I think a willingness to at least sometimes tell the truth at the cost of one’s life may cancel out helplessness when it appears a guarantee of safety and belonging at whatever other cost is near. I don’t mean to hurt you and I only say this because I think virtue can offer an alternative to being trapped. As a member of your audience, I thank you for this article. Have a good day!

  10. 0

    I am on the Autism scale. Higher functioning part of the scale as its now known. Previously those of us on the higher part of the scale were said to have Asperger Syndrome. Times and definitions changed. Reading your article I can relate completely to everything you did. You can’t change what you are but you hope by being perfect people don’t ask and don’t make fun of you. You get a pass for being Autistic. You know you are not on the lower end of the scale. But you sympathize with all of them though.

    Where as physical deformity prevents you from doing certain thing mental deformity does the same thing. Its just a lot harder to see.

    Carrie your writing and self awareness give all of us with disability both physical and mental the strength to just keep swimming. It gives us the ability to see what we lack and what we can not change. But it also gives us hope for the future. Hope that in time we are not as deformed as we think we are.

  11. 0

    Thank you so much for this Carrie, it’s really made me think more about how I deal with my vulnerabilities as an (invisibly) disabled person.

    I was diagnosed with my disabilities (EDS, POTS, Fibromyalgia), a little over a year ago and for the vast majority of the time since then, (after I was well enough to leave the house for non-essential things), I focused too much of my limited energy on being useful. I did more work on my two voluntary roles than the vast majority of my able-bodied colleagues, partly because it needed doing, and partly because I needed to show that I could.

    I’ve always been very open about my physical health, and most of my mental health and I don’t feel ashamed of my disabilities, though they’ve driven me to push way past my limits to prove that even when I’m vulnerable I can be useful. I’m getting better at being realistic about what I can do, after burning myself out a couple of times. It’s a tough process, especially for those of us with intersectional identities, and hearing other LGBT+ disabled voices really helps, so thank you.

  12. 0

    This was amazing and SO NEEDED. I am “good disabled” and today was the first time I went out BY MYSELF to PT. I called an uber and took my walker since I worried taking my wheelchair would be too weird/hard. The first driver was kind of weird about my walker and wasn’t very helpful in helping me get all my shit in the car. I realized on the way to PT that I literally don’t leave my house without a member of my family driving me and then a member of my family usually pushing me because my joints hurt. I haven’t gone out on my own since last February. I have become frightened of things I never used to be and at times obsessed with someone breaking in or someone assaulting me, this fear is mainly why I haven’t tried to take an uber by myself for MANY months. Ever since I started using a wheelchair I feel SO VUNERABLE and raw. Some days being in public and knowing everyone can “see” that I am different, shewwwwww it’s weird and hard and yet just a part of my story. I loved every word of this piece. Thank you from the bottom of my heart. Your writing is powerful and I hope to find more of it online <3
    genevieve-www.shipwithnosails.com

  13. 0

    Loved this so, so, so much. Resonated with every word. Thank you, thank you. I don’t know where I fit into the good disabled/bad disabled binary–I’m probably closer to the good disabled side–and everything about this piece rang so true.

  14. 0

    It is very lovely to be able to read many thoughts that I carry around with me daily put into words in your article. I might have said that in a comment on a different article of yours but if not now I’ve said it. 🙂
    Wouldn’t it be great though to have more writers in the “disability” section? Very gluttonous of me, I know, but I would love for there to be an even greater diversity, and admittedly more things to read 😉

    That being said I think your articles are wonderful and I’m always happy reading them because they are very intelligent and thoughtful. Kudos!

  15. 0

    Thank you so much for this well-written article. I’m hoping the analogies you use will speak to non-disabled people I’m hoping to educate. (You have my gratitude for helping me save my energy for tasks that don’t make me furious and vulnerable.)

    Recognizing internalized ableism is vitally important. I wonder what the best next step is? Earlier in my life I gained so much from feminist consciousness-raising and political study groups.

    Where can I find or create the space to learn how to move from “internalized ableism is a thing” to “how to undo internalized ableism.”

  16. 0

    I needed this so much. My chronic illness has gotten a lot worse over the past couple years and I’ve lost a lot of my independence as a result. I’m struggling to accept my new reality as a “bad disabled” person, that I need help and I have to ask for it. That my life probably won’t ever look the way I hoped it would, that this is the new normal and my only option is to learn to cope with it. I’m learning that my true friends are the ones who continue to show up and lend support, and that a lot of people I thought were friends don’t actually want to stick through the rough stuff because it’s not fun, and they don’t want me to hold them back from their good time. And it hurts. But knowing other people feel this way, struggling with internalized ableism and the ableism of people who are supposed to love and care for you, that helps a little.

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