Know Me Where It Hurts: Sex, Kink, and Cerebral Palsy

I have cerebral palsy. That means something different for all of us: some of us walk with braces; some walk without anything; some use wheelchairs; some have hands, feet, and faces that do their own thing; some stand on their toes; some communicate verbally; some don’t. Personally, I walk like this:

cat-power-jukebox-cover

And I wear these:

rainbow braces

(My orthotist gave a knowing look when I finally requested the “rainbow” swatch.)

I don’t exactly pass as able-bodied. Most people know something is “off” as soon as I stand up (as one college professor not-so-gracefully put it, “I looked at you and went ‘hmmm‘”). But sitting down, almost no one can tell, so I inhabit a middle space that confuses people all across the ability spectrum. People with CP have literally asked where mine is, as if it can be located. It’s true that I lack many of CP’s obvious markers, and aside from stairs without handrails and clawfoot bathtubs (seriously, why?), I don’t have to battle many physical barriers. But literally walking the line between able-bodied and not has given me an up close look at how people think about disabilities, and I will say this: if you’re not able-bodied, it’s really hard to get people to take you seriously.

They will tell you how brave and inspirational you are, for sure (which, of course, is more about them than you). They’ll tell you God loves you extra. Bonus points if they are also crying. But they’re uncomfortable, on some level, with you making your own choices — especially if those choices might have painful outcomes. Everyone around you will manicure your life so that you don’t have to experience difficulty. Things will happen around you rather than to you. Risk taking isn’t presented as an option. There are a couple different assumptions at work here: first, that you’ve already been through so much that you deserve the gold star of a decision-free life, and second, that you are a child in need of constant protection. That becomes a self-fulfilling prophecy: when everyone takes care of you, it’s damn near impossible to grow up.

When I talk about these issues with straight people, I always say “the other difficult thing to do when you have a disability is get somebody to fuck you.” They laugh, I laugh, and we can all move on without really pausing to examine why that is. But since we’re all inside the amazing feelings cocoon that is Autostraddle, I’ll admit that’s not the whole truth. Yes, sex with a disability is a tough sell, but not (just) for the reasons people assume. In my experience, the hardest part isn’t convincing someone else you’re desirable — it’s convincing yourself that your body is worth pleasing.

Anyone who’s come out, if only to herself, knows a similar feeling: acknowledging that your desires are valid even though they’re not the ones you were “supposed” to have. When I came out in high school, I knocked cerebral palsy to the furthest psychological backburner possible. Now I had a new “thing” to focus on — and one that people around me, even if they didn’t understand it, had at least heard of before. I was the only physically disabled person at our school who wasn’t also in special ed, but there had been other out gay people there before I came along and there would be more afterward. I was no longer by myself. It didn’t feel as lonely. And unlike with disability, there was a prescribed narrative for how to deal with it, which I obviously embraced to a T: I announced my gayness during a Gay-Straight Alliance Meeting and was promptly elected club president for the following school year. It doesn’t get much more Coming Out 101 than that.

I compartmentalized my disability and my sexuality like it was my job until after college. Then I realized I wanted to actually have sex instead of just picking it apart in sociology class. So, like any self-respecting queer lady, I turned to the internet — and met Alex.

In her first message, she admitted she was in the bathtub, drinking wine to keep her courage up. In retrospect, bathtub computering is probably a bit of a red flag, but what impressed me at the time was her complete honesty about being nervous. It made me feel safe, like I could be too, and that’s exactly what I needed. I wasn’t sure what else would happen, but looking across the table on our first date, I knew: you are the first person I’ll sleep with.

First time stories are always fun/mortifying, but that’s not the one I want to tell you, because that’s not the one that woke me up to the fact that my disability and sexuality have to breathe the same air. That happened about a month later, when Alex rolled over in bed and asked:

“So… how do you feel about bondage-y things?”

Remember for a moment that I had just gotten used to having sex at all. So my initial reaction was along the lines of UM WHAT I HAVE NO IDEA CAN I PHONE A FRIEND. But beneath that, I asked myself something else: how often are people this open about what they want? I wanted to please her, but was also interested to see what this would mean for me and for my body. It’s not often people invite me to take physical risks. So I agreed to try it.

And then… nothing.

I braced myself for the start of our little experiment, but things unfolded pretty much the same way as before. The delight of never knowing quickly gave way to frustration. I suspected why, but didn’t want to believe it. Sure enough, when I finally asked, I got the answer I had feared: “I’m afraid I’m going to hurt you.”

What that said to me was, “this woman still thinks I’m a little girl.”

Up to that point, I thought I’d done everything “right”: cultivated a functional relationship, finally let someone see me with my clothes off, said yes to sex, talked about my body, listened about hers, been willing to try new things, behaved like an adult. But it turns out it hadn’t worked. All of a sudden, the “nice girl” formula that had made my disability palatable — acknowledge, but don’t dissect; laugh it off when things get tough — failed. I had literally done the most grown-up thing I could think of with this person, and she still saw me as vulnerable. Not in the way that brings people closer, mind you, but in the way that makes them afraid to touch you. Makes them think you’re breakable.

Instead of screaming in her face, which is what I really wanted, I turned her question back on her and asked: “Who’s better at pain than I am?”

As a way to get a grasp on the whole CP situation, people like to ask me, “does it hurt?” In pain/not in pain is a good/bad binary that they can digest. It allows them to categorize my body in a way that makes sense, and tells them whether they should feel bad for me or not. I always say no because I don’t want to give anyone (more) reason to look down on my body. But let’s be real — there are screws in my spine. Of course it hurts. There’s at least an unpleasant twinge happening somewhere all the time. So what people should really be asking is whether the pain is Old or New.

Old Pain I’m used to: the tightness in my hips when I don’t stretch in the morning, the pressure where my legs meet my back when I walk too far. It’s not that I don’t feel it; it’s just been there for so long that I know not to get nervous about it anymore. New Pain is where it gets scary because it stops having a name. I can’t immediately catalog it or diagnose it as benign. At best, disability allows you to create a tenuous peace with your body, and anytime it decides to violate that mutual agreement can be terrifying. You take the time to figure it out — what it likes and dislikes, where it functions best — and stick to that routine, until New Pain reminds you that you’re never quite going to have this figured out.

The upside, though, is that I can handle pain like a pro. It’s easier for my body to feel pain than to feel good. Now, maybe I could have both.

The next time we had sex, Alex said, “close your eyes — I want to try something.”

I did, but it didn’t matter much, because she tied a blindfold around my eyes first thing. Then I felt my hands go up behind my head, and heard a click, click. I didn’t expect handcuffs on the first try, but there they were. And then I felt the first pinch — right on my nipple. And then another on the other side.

“Is this okay?”

“Keep going.”

I never asked her to stop, which is a shame, because our safeword was dinosaur and I still think that’s amazing. But alas, there was no dinosaur, and when she took the blindfold off, I saw that my chest was covered in clothespins. (When you’re in your twenties, nipple clamps are expensive, so you work with what you have.) I’d never seen my body look like that. She must have been pretty impressed, because the first thing she said was, “I’ve never been able to do that before. Nobody has been able to take that many.”

It’s not often (i.e., almost never) that I get told I’m good at a physical activity. But now my body, which had spent so many years letting me down and making decisions without my consent, had gone and done something absolutely right — and done it better. It had done something other people’s bodies, “healthy” bodies, hadn’t been able to.

So often we’re told that the “right” partner will “look past” our disability or “love us anyway,” like they’re on some sort of humanitarian mission. In that moment, I realized what complete and utter bullshit that idea is. The problem is not our bodies — it’s the misguided assumptions people project onto them. That we shouldn’t want them. That we don’t know how to use them. That they need to be cured. That’s what I want the people in my life — friends, family, girlfriends — to look past. I don’t want them to look past me. My disability is essential to my body. It’s a tough belief to stick to, and one that requires constant reinforcement, but it’s the truth.

Any woman can tell you an epic saga about her experiences with body shame, and a disability just compounds that, because so much talk is focused on what your body will never be able to do. You barely ever see any bodies that look like yours, especially outside a doctor’s office. And when you do, they’re never beautiful, they’re apologized for. But that night, I realized that my pain tolerance and the things my body did well were assets rather than things to be run from or ashamed of. To know that what had been perceived (especially by me) as defective about my body was actually what made me desirable, powerful and sexy for the first time ever — that moment was beautiful.


in-article-A-plus-banner

Profile photo of Carrie

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.

Carrie has written 1 articles for us.

69 Comments

  1. Thumb up 12

    Please log in to vote

    “At best, disability allows you to create a tenuous peace with your body, and anytime it decides to violate that mutual agreement can be terrifying.”

    I love this description. Thanks for taking the time to explain a little of your world to those of us who don’t know first-hand.

    • Thumb up 1

      Please log in to vote

      Yes! I was going to quote this part as well and as a person with a disability can relate SO much to this.

      I have so much love for this work, I couldn’t even properly describe it. To discuss disability and sex and kink!

      Thank you for sharing. Hope to see you write more here.

  2. Thumb up 2

    Please log in to vote

    What a great way to think of it. It had never occurred to me before. Thank you.

    Also quite a funny turn of fate is that my name is Alex and I have CP. Also recently broke my leg in a couple of places. Everyone thinks that I am now made of porcelain a bit more now.

  3. Thumb up 16

    Please log in to vote

    Thanks for sharing! I don’t have CP, but I do have a disability which is sometimes invisible and sometimes more obvious and have found that having a not-always-obvious disability means that sometimes people will say horrible things about people with disabilities in front of me (under the assumption that I am able-bodied).

    One incident that stands out is a conversation I had at university during which some of my acquaintances claimed that a temporary disability would be endearing (“like, I guess it would be kind of cute if a guy had a limp from a little accident”) but a permanent one would be a dealbreaker. After that conversation I was even more convinced that romantic relationships were off the table, at least during my 20s when people could probably find plenty of other prospective partners who didn’t have mobility issues. Fortunately, my girlfriend wasn’t put off and is awesome about the disability stuff – but it still makes me angry when people assume that disabled people don’t want or deserve intimate relationships.

    • Thumb up 10

      Please log in to vote

      Oh my god YES. My best experience with that was at the gym (another space where people are very… shall we say, surprised to see me). I was doing some exercises on a floor mat and these three older men nearby were talking about how their friend (a small business owner) was being sued for ADA noncompliance. They then proceeded to go on a rant about how “crippled people are leeches on society.”

      Once they were done, of course I just got up and did a nice, slow, conspicuous walk right in front of them. The few times I’ve seen them back there since, they haven’t been able to look me in the eye, so I think it worked.

      So glad you’ve found a partner who’s on board and understanding. That is the best thing.

  4. Thumb up 8

    Please log in to vote

    This is literally my entire life, word-for-word. (Well, minus the part where I actually get to have sex… because, as you said, it’s hard to get yourself to take you seriously, much less anyone else. )

    Anyway. The entire first two paragraphs, the part about being the only disabled person not in special ed (try being in “gifted” ed; that blew teachers’ minds), everything.

    Thank you so much for writing this.

    • Thumb up 4

      Please log in to vote

      I feel you on that for sure. I was on the AP/advanced track all through school too and it just CONFOUNDED every administrator/parent/random adult (nobody my age had any issues with it… not shocking). You could see their brains explode a little bit every time they tried to connect the dots.

      Thank YOU for reading! <3

      • Thumb up 0

        Please log in to vote

        Carrie, this post is so great! Thank you so much for writing it. Like you, I occupy the middle space of dis/ability in which my disability is visible, but as I have adapted to the environment, I do not have many physical barriers, but I deal with a lot of social ignorance.

        I also replied to this particular comment, because I wanted to say that I also identify with being the amazing shockingly smart disabled person in honors courses (eyeroll).

        I am currently doing my senior capstone research on the sexual and reproductive health care of women, trans*, and genderqueer folks with visible disabilities. Just saying.

        While, I wouldnt mind interviewing anyone that reaches out to me, I was mostly commenting to say that I would like to keep in contact with you all. Katie, I just followed you on Twitter/Tumblr. Carrie, you do not list any contact info, is there a way that I can continue to follow your work?

        • Thumb up 2

          Please log in to vote

          Amber, thank you so much! Flattered by such a ringing endorsement. Your capstone project sounds badass and I’d love to be part of it. You can email me at wadeacar@gmail.com, or visit my recently revived Twitter @wadeacar.

          Thanks again for reading and responding. I loved writing this piece, but I love that it’s resonating with people even more.

  5. Thumb up 9

    Please log in to vote

    I was so excited to see this piece, and it is so well written – great pace, well chosen language that really explains her perspective. I was keen to see Carrie’s bio, because I kept thinking ‘is this girl British, her syntax is all anglophile’.

    My favourite incisive observation: “The problem is not our bodies — it’s the misguided assumptions people project onto them”

    *So* looking forward to more articles about impairment, disability & their intersection with gender & sexuality… and everything else!

  6. Thumb up 9

    Please log in to vote

    THIS: So what people should really be asking is whether the pain is Old or New.

    Old Pain I’m used to: the tightness in my hips when I don’t stretch in the morning, the pressure where my legs meet my back when I walk too far. It’s not that I don’t feel it; it’s just been there for so long that I know not to get nervous about it anymore. New Pain is where it gets scary because it stops having a name. I can’t immediately catalog it or diagnose it as benign.

    And especially this: At best, disability allows you to create a tenuous peace with your body, and anytime it decides to violate that mutual agreement can be terrifying. You take the time to figure it out — what it likes and dislikes, where it functions best — and stick to that routine, until New Pain reminds you that you’re never quite going to have this figured out.

    Thank you. These words help me understand myself and my pain better. Holy shit.

    • Thumb up 1

      Please log in to vote

      Holy shit is right! I don’t have CP or anything remotely close to it, so of course, I’m an ignorant idiot about that, but about a year ago I was diagnosed with a chronic pain condition that directly affects many aspects of my life (including sex and romance) and makes me feel, as you say, like I’ve got a very tenuous pax with my body at best.

      This article gave voice to thoughts I’ve been having, alone, for months and months. And it voiced them so beautifully, so sans-bullshit, so truthfully that I began to cry. Thank you for this. You have no idea how much.

  7. Thumb up 4

    Please log in to vote

    Ok this was not just inspiring but really informative. I mean the clothespin thing tho. I’m kidding, I have a cousin with CP and she’s around 20 with her first BF. He’s a sweet guy. But the clothespin thing tho. Thanks for sharing Carrie! Love the rainbow swatches!!!

  8. Thumb up 7

    Please log in to vote

    I think this is very beautiful I am newly paralyzed and people who used to treat me like I was years older started treating me like I am incompetent even though I’m in all honors. This really helped me to see my body in a much more positive light than i have been thank you so much writing this.

  9. Thumb up 7

    Please log in to vote

    What splendid language for chronic pain: Old pain/New pain! That distinction would have eliminated many clunky and confusing conversations back in my teen years.

    Wonderful article. I want everyone to read it.

  10. Thumb up 14

    Please log in to vote

    Thank you for writing this, it is something I sorely needed to see. I wobble around in my ugly AFO’s (with plain dirty white velcro… I have supreme jealousy of your rainbow straps!) and refuse to use my wheelchair unless I absolutely can’t take another step, because I’m afraid of being seen as less than equal. I hurt so badly at the end of the day because I try so hard to keep up like nothing is different. I wonder how exactly in the heat of the moment one says, “hold on a second, let me take off my legs so I can get my pants off.” I wonder if my body even works right that way anymore. But most of all, I wonder if I will ever find anyone that will be able to love this broken body as if it were no different from theirs.
    I think that I have started to realize, as you put it, ” the fact that my disability and sexuality have to breathe the same air.” I’m not there yet, but I just wanted to say that reading about someone who has already crossed that point in their life is very helpful to those of us just getting started.

  11. Thumb up 4

    Please log in to vote

    There’s so much I want to say but I don’t want to end up writing my own essay in your comments. I’ll just say thank you, mostly. I can relate for very different reasons, and it’s nice to see this meaning something to a lot of different people. I think it sank in, and that’s awesome. Well done.

    I’ll just add, briefly, that for me a lot of frustration comes from being labelled by the rest of the world as ‘the disabled girl’ on sight and everything/anything else I am or want to be being secondary at best. It’s not who I am or want to be, but I haven’t got a choice in the matter. The internet is a place where that can be different, but that’s a very limited thing, not some magical wonderland where I’m understood and respected as a three-dimensional being who just happens to have had some shit go wrong along the way.

    The queer community in particular should be very aware of what they’re doing when they slap a label on someone and walk away, IMO, and I think this article will go some way to making some people think twice. Was excited to see it, and was definitely not let down. :)

  12. Thumb up 1

    Please log in to vote

    This article is so perfect. One of my closest first cousins has cerebral palsy and so much of this applies to him too. Especially the part about someone’s disability not being some terrible “problem” that needs to be “cured”.

    Thank you for sharing this with us.

  13. Thumb up 1

    Please log in to vote

    Despite being a straight male bodied person with no real physical challenges to speak of, I found this article somehow really easy to relate to. It’s incredibly well written with an insightful POV. Thanks for sharing, I am enhanced as a person for having read it.

  14. Thumb up 0

    Please log in to vote

    Thank you for sharing this!

    [Currently able-bodied person asking an educationy question ahead, feel free to skip the rest of this comment if you don’t want to deal with it]

    So, I do want to ask opinions on something. I’m kind of a newbie domme – I’ve done plenty of lighter stuff before, but not really any heavier things, and while I’m interested, I’m not currently confident I’d be able to do heavier things safely.

    I just want to get personal opinions on if that’s a good way to communicate that to new partners who’re interested in bondagey stuff? (I know people can only say for themselves on this, still I’m interested if anyone wants to share.) Cause as you talked about, saying “I’m afraid I’d hurt you” carries that insulting made-of-porcelain implication.

    So yeah, if anyone has an opinion on that they’d like to share?

  15. Thumb up 2

    Please log in to vote

    As a queer person with CP, and other disabilities, this article made me see my life in a new light. (Not) Being allowed to “take risks”, and especially “seeing my body as worth pleasing”, and also the comparisons of the construction of sexuality and disability, all of these I can see reflected in my life. Great job

  16. Thumb up 1

    Please log in to vote

    You are such a natural storyteller. This was beautiful and so are you. Thank you for your vulnerability, thoughtfulness, and conviction. I want to show off this article to everyone because I am so proud of my friend!! <3

  17. Thumb up 1

    Please log in to vote

    Thank you for writing my…er…your story, Except for some minordifferences, like, anatomy for example, orthotics and such, I can now add you to the list of my enablers of my other disabling condition, PROCRASTINATION! This is so well written, and so spot-on. I think my favorite line is ” … I inhabit a middle space that confuses people all across the ability spectrum. ” I’m tempted to quote it in my Grindr/Scruff bios. :-)

  18. Thumb up 1

    Please log in to vote

    First thank you for this article Carrie. To talk about disability/impairment and sex is such a vital part of the Disabled People’s Movement in my view. It remains the silent, hidden but sometimes most painful issue that we face. We will not achieve the goals of full inclusion and rights socially, economically and politically until we are included in the sexual spectrum in my opinion.

    I am a little person or LP or person with dwarfism and queer. I too have a incredibly high pain tolerance. For me however pain (in whatever form it comes in) is a very emotional issue. I tend to have emotional reactions to seeing pain be inflicted on people consensually, even though I am sex positive and support the rights of everyone to practice whatever kink they desire. But my experience with pain triggers these reactions. It was really interesting to hear of your perspective on this and shed some light on how I might reconcile this issue.

  19. Thumb up 1

    Please log in to vote

    What a wonderful piece of writing.

    This part gave me some feels: “Everyone around you will manicure your life so that you don’t have to experience difficulty. […] When everyone takes care of you, it’s damn near impossible to grow up.” I have a cousin with CP, and when she was a baby doctors told my aunt she would most likely end up in a wheelchair. My aunt decided she was going to give her the best possible chance of being independent, so she refused to coddle her any more than her older sister (for example, as a toddler, when she cried for a toy across the carpet my aunt would make her find her own way there instead of handing it to her). People were shocked by this and told my aunt she was cruel and insensitive. Today, my cousin walks on her own and is a strong-willed and confident woman.

  20. Thumb up 0

    Please log in to vote

    Echoing the sentiments of every other person who has commented – This was an amazing piece of writing. You are an amazing human with a POV that is like a breath of fresh air, and reading this article helped me find peace. Thank you!

  21. Thumb up 0

    Please log in to vote

    Late to the party, but just want to chime in and say thanks as another queer person with CP (hi everyone!).

    I haven’t had an aha! moment like you described, but I hope one’s coming? Related to so much of this piece.

  22. Thumb up 0

    Please log in to vote

    As kinky person with CP, I really appreciate this article. I haven’t had sex yet and I’m concerned about my lack of flexibility and muscle tightness during vaginal intercourse (my muscles are tense even when I try to relax). Would anyone else out there with CP share their experience? I worried sex will be too painful or I’ll disappoint my partner. Thank you.

    • Thumb up 0

      Please log in to vote

      Patience and communication, my friend–the things EVERYONE needs more of in sex. I won’t lie to you and say it’s always going to be super fun. Your body might take some negotiation, which can be frustrating because that’s never really painted as sexy (for instance, the fact that able-bodied people in movies/TV/actual life can just kick their shoes off before sex, and take that for granted, is hilarious to me. I have to be like OKAY HANG ON and sit down and deal with it for a good 2-5 minutes. That said, their reaction is a great litmus test for how the whole thing’s going to go).

      But guess what? Your partner’s going to need that same stuff from you, too, even if it’s for different reasons. There’s no magic formula to figuring out anyone’s body. Everyone’s got their things–and you’ve got a lot to offer because you can empathize with that.

      Hell yes it’s gonna be awkward. It will take time to find the ways and even the people that help you and your body feel the best. Some folks won’t be down with it. Sometimes YOU Won’t be down with it. But my best advice is to just be patient with your partner AND yourself. My body never really relaxes either, so the best sex I’ve had didn’t happen when I felt most relaxed (and definitely didn’t happen right away); it happened when I was being the most honest, even if that meant some parts were a little clumsy.

      You bring so much to the table as someone with an innate understanding of bodies (and the fact that not all of them work the same way). It might take time to fight through the nerves and weird feelings before you can really own that, but seriously, it will be a huge asset for both of you in the end.

  23. Thumb up 0

    Please log in to vote

    “Who’s better at pain than I am?” Um…Yeah. That’s hot.

    Aaanyway…

    This was beautifully written and I wish I had spotted it sooner! Thank you for sharing your story and a point of view I don’t usually have the ability to see.

Contribute to the conversation...

You must be logged in to post a comment.