Sex & Disability: Five Things I Wish I Knew (About Having Sex As A Disabled Person)
Sex and disability! It’s been covered, it’s been rewritten, it’s been covered again. Because it’s fucking important. And because both sex & disability are incredibly personal (aka, your mileage may vary may as well be the tagline for both – it means something different & entails different things even for people with the same preferences or diagnosis!) I still think with the zillion pieces covering it, I should write my own. I’m sure this is something I’ll want to continue writing about but…let’s talk real quick, shall we?
Here, I’ll be talking specifically about physical disability – because that’s what I have experience with. I’ve been chronically ill & disabled since I was…8? Nine? I’m not sure anymore. I’ve got a bunch of random diagnoses at this point – chronic illness, chronic pain, and realizing I’m not able-bodied has been a lifelong thing. There’s a lot of “normal” (cough…able-bodied!) experiences I feel like I’d missed out on in the past seventeen years, but something that it’s impacted more heavily than I ever would have imagined upon my first diagnosis is my sex life. (Probably because I wasn’t aware of sex past child-rearing at that point, but as an adult there’s more times I pull myself aside and go “WAIT…this is because I’m disabled!” in relation to sex than most other physical activities. Which might just be because sex is the only physical activity I partake in for the most part, but I digress.)
For me that means not only is my sex drive a complete mess (Is it up? Is it down? Does anyone have a normal relationship with arousal? What is going on and why can’t I Google this? Apparently, not having an active or consistent sex life is pretty common when I’ve gone on fact-finding missions about sex and disability.) but things that wouldn’t bother others bother me – things that should hurt don’t, things that shouldn’t hurt do. Which gets kind of messy (and frustrating, for me at least) when you’re having to stop a partner thirty seconds into something because your sex drive either got punched in the throat, or you feel like you’re actually physically getting punched in the throat. Very very fun times, indeed. (Especially when it comes to sussing out what is causing what – whether it’s mental health, my physical health, or things like sensory issues causing whatever issue arises. Love it!)
Why I’m mentioning any of this (I swear it relates to the overreaching topic!) is that stuff like that has kind of, lowkey given me a really fucked up view of sex. Or did, at least. I don’t know, it’s still a bit skewed at times. It’s an unlearning process – which I feel like being a disabled person (and an openly disabled one, at that – in recent years I’ve gotten incredibly upfront with it because it impacts just about every aspect of my life) in general just has absolute oodles of. Unlearn this, accept that, rewire this, try not to shame yourself for that. (Also, in the realm of anything sexual I feel like unlearning, reeducating, and all of that fun stuff applies too – disabled or not. Can I get a degree for gaining a healthy relationship with my own sexuality? Do you want a gold star?)
So. If I could make a list of super-basic shit I’d tell 18 year old me about their approach to sex relating to their physical health and disability (I’m sure I could write a laundry list regarding their approach to sex as a whole…poor stupid baby-me, aha.) – what to look out for, what to not do, what to be aware of – this is what it would be. Maybe it’ll help you, whether you pick up a tip for yourself or it just makes you think about things a little differently. I think this list could apply to just about anyone having sex, but it’s especially important to remember as a disabled person because it’s not like we’re handed a guidebook on “Here’s How Being Disabled Will Effect Your Sex Life And How To Deal With That”.
(Of course, don’t let me stop you from doing something you enjoy unless that shit is highly dangerous & illegal – this is more so just a list of things I’ve had to struggle with and unlearn that I thought might benefit others and doesn’t talk about any specific type of sex!)
- Stop putting on “a brave face” to have sex.
Seriously, what is wrong with you – dude. FUCKING STOP. This should be an everyone-all-the-time rule, but the “need” to push ourselves as disabled folks sometimes (against our better judgement, I think we all know we “shouldn’t” in any situations but it’s a hard habit to break) is so scary in relation to sex. If you’re not up for it, you’re not up for it – and if someone has an issue with that they can leave. Period. Basic sense? Sure. Something that has to be unlearned as someone that’s encouraged to seem as able-bodied as possible? Fuck yeah.
Pushing myself and “putting on a brave face” can mean I’m stuck in bed for a few days post-sex. Pushing myself can mean I end up with a killer migraine for hours afterwards. Pushing myself usually means I didn’t enjoy the sex whatsoever, because I was so focused on trying to go above and beyond, seem as able-bodied as possible, and not make it too obvious that I was grinding my teeth in pain – to even remotely enjoy myself.
It’s…kind of scary though. At one point mid-sex in the past, the position I was in felt like it was both dislocating my hip, and grinding one of my knees down to the bone. Readjusting didn’t help, asking to switch positions was declined, every minute felt like an hour because something that started out as enjoyable had pushed me too far and my body couldn’t handle it anymore but I felt like I couldn’t say anything about it.
It’d been like that for maybe ten minutes, and when that leg finally gave out under me and I yelped – I ended up being shoved to the floor when the person I was sleeping with stormed out of the room, pissed at me for…ruining a moment by being in excruciating pain? They wouldn’t look me in the eye for the rest of the night, clearly – I had ruined sex on purpose. (Not! It’s not your fault if your body doesn’t agree with something, y’all!)
Sure, this is a good example of “don’t sleep with shitty people” and that anyone that responds inappropriately when you say you’re uncomfortable or need to stop can kick rocks – but it’s fear of reactions like that that had me putting on a brave face to have sex in the first place, years before that interaction had even happened – I just knew it was a possibility. So, I’d grind my teeth and endure what I could. The fact that I just used to word “endure” about a sexual experience is troubling, honestly. You shouldn’t be enduring or “handling” sex. You should be having it, enjoying it. Not pretending, trying to be a good partner by putting on a brave face and disregarding the signals your body gives you.
- For the love of god, know your body.
Again, seems basic but not jumping in blind? World of difference. If you’ve got a vulva, whip out a mirror. If you don’t, fuck it – whip out a mirror anyways. Everyone should! Get weird. Know & respect the ways you can AND can’t move, figure out what’s a sure-fire hit with your body (we’re conserving spoons, baby!) from angle to technique. The only thing I give any credit towards me having a remotely enjoyable sex life as an adult? My penchant for masturbation. From positioning to method, to the ideal circumstances and environment.
I could have the best partner in the world that’s an incredible sexual match for me – but I wouldn’t know what the fuck to do if I hadn’t been sleeping with myself for so goddamn long. Because of that – I’ll show up with a detailed list of what I enjoy, what not to touch, and what I can physically handle. I also have a small list of needs as far as stimulation goes – things that are necessary for me to get off, so someone isn’t stuck in the worlds longest sexual encounter trying to make that happen without guidance. (Again, saving energy – saving spoons – saving your genitals from being rubbed raw, saving everyone from disappointment.)
I’m not saying you need to show up with a binder before every sexual experience, but the fact that some people don’t know these things about themselves is startling whether they’re sharing that information with who they’re sleeping with or not. Even if you don’t alert the masses, it’s good to know. (Yes, everyone should be doing this. But again, with the whole “pretending to seem as able-bodied as possible” bit, I feel like a lot of people I’ve talked to with physical disabilities, chronic illness, and chronic pain issues seem to backburner their needs as a whole – and that’s INCREDIBLY important for EVERYONE when it comes to your sex life. Period!)
- Know your body – Part Two: Electric Boogaloo
I wasn’t sure if I should include this as its own point, so as an extension of knowing your body and what you do like – be okay with how your body can’t perform. I spent far too long feeling like I was disappointing partners because of what I couldn’t do instead of enjoying what I could, and being comfortable with the fact that some shit just isn’t going to happen.
Some things I really really like – I can’t do for an extended period of time. Or at all! Some just cause instant pain for me! (Further – if you have joint issues, staying in one constant position can be rough – and not in a good way, even if you like said position! Don’t feel like because you started in one position that’s where you have to finish – cuz it might not be worth the pain during AND after. Consider the after!)
It’s weird having to make peace with your own body and its abilities, but I’m not gunna waste any more time resenting my body because can’t have sex standing up or get twisted up like a pretzel. (Fantasies are great! But don’t beat yourself up when they can’t come true.)
- Accessories, mobility aids, & accessibility are your friend
Need an extra pillow? Some snacks, maybe? Wearing a brace? Anything and everything to keep yourself comfortable so you can actually enjoy yourself is worth doing. (I can’t wait until I have the space for specific “sex furniture” – not in a pleasure room type of way, just that having something reliable to keep my hips from cracking in half without having to readjust is truly the dream.)
For me – keeping myself comfortable means shit like lube with a pump-top (and not being shy about it!) using gloves with any sort of handsy stuff, (from both a sensory “ick” perspective, and an “ouch” perspective – I think everyone should try gloves anyways if only for the different sensation, they can be pretty great.) spare pillows, and toys that are easy to hold – with buttons that are easily accessible without being “accidentally” pressed are great. (Also a huge fan of toys that light up so the buttons are easier to see!) I used to be incredibly embarrassed about the specific way I had to have sex to avoid being in pain for eons afterwards, beat myself up for not being more adventurous with things my body couldn’t do, and settled for a lot of lackluster experiences & painful aftermaths because of it. But goddamnit we’re all adults here – and if I need emergency fruit snacks from my nightstand drawer because my sugar crashed or to keep a water bottle within reach at all times – that’s my fuckin business and no one else can make that call.
- Don’t be ashamed. Read that again until it clicks.
I’ve wasted months & years of my life thinking no one would want to sleep with me because I’m high maintenance re:my body being busted – and lemme just say that having needs isn’t a flaw, y’all. (Or even accepting shit sex and less-than-ideal partners because “no one’s going to want me because I’m sick/disabled/broken/whatever”. Unhealthy thinking all around!) Then, I would rarely feel sexy solely because I’m not able-bodied, which is touted as the “standard”. Like oh, I must look how I feel, I’m hideous, something’s wrong with me type shit. (Bitch, being disabled doesn’t have a “look”, and a mobility device doesn’t make shit less hot, but go off I guess. Who says a knee brace can’t be sexy! Have I mentioned that having a body is just a series of unlearning things? Goddamn!) This gets a bit worse at times when my pain level or overall health dips – being on bedrest doesn’t make me feel very “hot”, so I assume my partner must agree.
I then wasted even MORE time because I was embarrassed by my limitations, didn’t want to freak out a partner, felt less-than, or felt like I should just shut up and deal with something that was damaging to me instead of discussing my own needs and limits. (Which again, you shouldn’t be doing anyways.) I would constantly worry that if I asked to grab a toy from my nightstand whoever I was sleeping with would either beat up on themselves for “not being able to get me off” (which has come up in past relationships – I have a nerve disorder! That doesn’t mean whatever you’re doing to me isn’t enjoyable!) or mock me for it. (Which has happened as well. By the way – 80% of folks with vaginas can’t get off from penetration alone, there’s nothing wrong with you if you’d like to use a vibrator for consistent stimulation instead of getting wrist cramps!) If a partners favorite position was something that wreaked havoc on my body, I’d feel bad for even suggesting we try something else to get a similar sensation for them without hurting me – like it was my fault for what my body can and can’t do. (None of that is true. Even in cases of disability caused by accidents – you didn’t choose that, and you certainly didn’t choose for it to impact your sex life! Stop feeling bad!)
This goes for everyone but if saying “stop” is what separates you from writhing in pain for days after, or you need something specific to get you off efficiently – don’t you dare feel bad about speaking up about it. There’s nothing “wrong” with having limits, or needs – and enforcing them.
- Sometimes, it’s just not going to fucking work.
I know most if not all of these points have the same bottom line of accepting your body, accepting your limits, accepting yourself as a whole. But, it really fucking sucks when you go into the ideal situation, in the ideal environment – with someone(s?) that knows your needs, what makes you tick, and how to keep things as comfortable as possible for you….and it just doesn’t fucking work. Whether it be your body disagreeing, your sex drive & brain screaming, whatever. I’ve had to stop for a billion reasons, from a leg cramp, a sudden migraine, or that I just feel awful and lost all interest in having sex. And you can stop! For whatever reason! It’s okay! You’re not “broken” because of it!
This is still my least favorite thing to have to know and accept about myself. I’ve had times where I’d be actively looking forward to having sex, there’s mood lighting and romance-novel level mush, the right warm-up is happening and my toy arsenal is within reach, it’s the ideal situation! I feel great! And then…it’s not. And I don’t feel great. At all. And I end up literally crying about it, because I wanted to have sex, I had the perfect circumstances to have sex, there’s no reason for me to not be having sex, and then suddenly – sex can’t happen. It’s baffling, it’s frustrating, and I usually end up wanting to throw a vibrator across the room and whinge about how my “stupid fucking body can’t even do one goddamn thing right”. I think I end up more upset & disappointed by it than some of my partners have been at times. (Again, I think that sort of thinking has to do with how some of us pretend to be able-bodied all the time, and hold ourselves to damn near impossible standards.)
No one wants to be “that guy” and interrupt or have to stop, but I think most people would rather whoever they’re sleeping with be okay, and comfortable than get off knowing they’re in pain or otherwise struggling. (Again, if they wouldn’t – don’t sleep with them. I know there’s no way of knowing this for sure beforehand, but anyone that pushes limits like that and doesn’t grasp consent or revoking it absolutely sucks as a human.)
…I know it still feels shitty. You might be down about it, feel inadequate, or want to “make it up to them” somehow. Don’t beat yourself up about it, and stop fucking pushing yourself. Sometimes the best laid plans still fall the fuck through, and shit happens. Easier said than done, I know. Better luck next time, and of course – depending on your headspace – if you’re up for it, “stopping” doesn’t have to mean ceasing all physical contact. You can just lay there and cuddle or something. (Sometimes it totally does mean contact has to stop, and that’s fine too! But there’s other times where I might hurt too much for any sort of penetration or I don’t want to be touched in certain spots, but still want to be close to someone and make out or something. Even taking a small break or an intermission to catch your breath, regroup, and have some water can help.)
That was a lot at once – and a decent amount of repetition – so what’s the takeaway here? It basically just boils down to: be fucking nice to yourself, damnit. Know what you can and can’t do – know what you like, and don’t be afraid to share that information with whoever you’re sleeping with. (Seems basic, but it can be really fucking hard sometimes.) There’s no wrong way to have a body, for the love of god.
Disabled & chronically ill people as a whole might have a less active sex life (typically due to symptoms, sex drive being affected, the fact that sex can be fucking exhausting, whatever – thanks Google.) but that doesn’t mean we can’t have awesome sex, (even if it is infrequent for some) or that something is terribly wrong with our bodies and we’re somehow “broken” because of our needs, because we need excessive lube, or because someone can’t put their legs behind their head. (Or maybe your joints are hypermobile and you can, but like…you shouldn’t.)
Unlearning the negative ways you can view yourself – as annoying as it is, can help a hell of a lot in every aspect of your life – but especially with sex. I used to be embarrassed to use mobility aids when I needed them cuz y’know, accepting your body for what it is kind of sucks and the way disabled people are viewed also…kind of sucks. Now I’m hype because if I use them, I know I can do more than I would unassisted. Same goes for sex, if I’m comfortable & have things that make it easier for me – I can actually enjoy myself, & for longer periods of time instead of just clenching my jaw and hoping my partner gets off before I run out of energy for pretending that I’m not in pain.
If you made it all the way through this ramble – I hope there’s at least a sentence or two that is useful to you. Feel free to leave a comment and let me know what works for you. Do you have any “sex hacks” (God, I hate that word) that make things easier on you? What wisdom would you hand off to a past version of yourself before they got sexually active? Have something else about sex & disability you’d like my take on? I wanna hear it!