Sex and Disability

You deserve a full and satisfying sex life

Hello! This week’s awesome indie bookstores where you can pre-order Come Together are:

All She Wrote Books in Somerville, MA, Morgenstern Books in Bloomington, Indiana, and Lark & Owl Booksellers in Georgetown, TX. They can all help you pre-order Come Together.

And now for a really important question:

Q: I was wondering if you would ever consider doing a post that specifically focuses on positions, cushioning, or toys/tools for people with “disabilities” who want to have sex? Unfortunately for myself and most of the other people with “disabilities” that I have communicated with, we have mostly had A. uninformative and/or B. downright insulting conversations when we’ve spoken with medical professionals in the past. (Hopefully kids in this next generation won’t have to hear things like “I don’t even know why someone like you would even want to have sex”). It makes it really hard to bring it up again in that setting. The internet can be a great place to get ideas, or talk to others in your position, but sometimes having an expert is really important. I understand that thinking about people who are different, having sex, can make people feel uncomfortable or may run into unconscious biases they have against it. It’s more comfortable for them to ignore it. This attitude and the difficulty to find/downright lack of information available feels so disabling to me personally. I very clearly feel that people want me to stay in a “lane” that I did not choose, and do not want to be in. Any limitations I may have physically, should not preclude me from having a full and satisfying life as anyone else.

I know that there are a few of us who would really appreciate some advice. Specifically for spasticity and dystonia, chronic pain, and wheelchair or assistive device users. Holding positions can be extremely fatiguing for people who have spastic movements, add in the muscle tension that comes from arousal and it can lead to a lot of frustration. (or unintended accidents, like the time I kicked my boyfriend in the face because I spasmed) 

A: Awesome, important question.

Let me start by acknowledging that I don’t have specific tips for managing spasms and other specific health issues—and that’s not just because it’s beyond my expertise. The very best source of ideas is other people living with the same diagnosis, physical limitations, or experiences that influence your sex life—that’s certainly where I’ve gotten most of the information I share. Two books I always recommend are: the classic Ultimate Guide to Sex and Disability and the Bumpin’ Book of Sex and Disability. I also recommend Andrew Gurza’s podcast Disability After Dark and Undressing Disability from Enhance the UK.

A more targeted source of ideas might be simply to search the internet for your diagnosis and “sexuality.” “Patient innovation,” as it is technically known, has long been an essential component of self-care, empowerment, whatever you want to call it. As much as I love something “evidence-based,” it’s just true that hearing from people with similar experiences, learning what worked for them and what didn’t, can be a far more effective way to explore techniques and strategies than anything science can offer.

What I can offer is a mindset that makes any advice or ideas you try most likely to be effective.

You want and deserve a full and satisfying sex life. If you somehow happened to be raised in an extraordinarily sex positive, body positive, inclusive, and pleasure-oriented family or culture of origin, then incorporating strategies for managing spasms, muscle fatigue would be as simple as, say, noticing that some positions are really fatiguing and either spending less time in those positions or using cushions, pillows, slings, or other props to take some of the effort out of it. Leaning on your elbows gets painful pretty quickly? There might be strength training some people can do to build stamina, or there might be firm foam pads you can put under your elbows and brace with your hands, to take some of the strain off.  These are practical solutions to practical problems. They require experimentation and an open, curious, playful approach.

But probably you were raised in a culture that trained your brain to have some pretty specific expectations of how sex is “supposed” to work. The reality is that your physical differences may make some of those “supposed to’s” entirely out of reach, and most people in that situation will probably have some feelings about that reality.

Something I say in a lot of situations that’s relevant here is: the process of dealing with a problem is separate from the process of dealing with the feelings generated by the problem. It may be a practical matter to shop for (for example) a Liberator pillow or piece of furniture that best meets your needs. It may be practical and even fun to experiment with a partner, how they might use a yoga strap, sheet, or their body to support your body while you relax into their support. It’s another matter to notice that some part of your brain might feel sad, angry, resentful, frustrated, worried, or any or all of those things about the fact that your favorite sex position has become so effortful. Aging can suck. Loss often sucks. Change can be difficult, even when it’s change for the good.

Let’s take the example of how frustrating it can be if the physical tension of arousal actually triggers a painful spasm. It will take practice and mindful awareness to allow tension to build gradually without crossing a triggering threshold, learning to spread the tension out over larger muscles and a larger number of muscles, rather than allowing it to build in focused, small areas. (These are just one person’s examples; your experience is probably different! That’s why practice and paying attention to your own internal experience are so essential!) But that practice and that mindful awareness are only possible when you’re able to attend nonjudgmentally to your experience. If part of your brain is like “I hate this pain, I hate these spasms, I hate having to put so much effort into accessing sexual pleasure!” that’s legit and real and valid and it happens. And it’s hitting your brakes, making it all the more difficult for your arousal and pleasure to increase.

Nonjudgmental awareness is the key to all great sex, actually. It’s the same thing I say when people are struggling with orgasm. Neutral noticing, turning toward whatever’s happening with nonjudgment and even curiosity, is the key to finding your way to pleasure.

I’m not saying not to have feelings about stuff your body does that impedes your access to pleasure; I’m saying have a process in place for dealing with those feelings, allowing them to move through you and out, so that those feelings don’t become yet another thing that impedes your access to pleasure.

One point of view that might make it easier to be nonjudgmental about the differences in your sexual experience is that it’s a direct “fuck you!” to the medical providers and other people who treat your sexuality like an aberration instead of a human entitlement. Those jerks can take a long walk off a short pier, as my grandfather used to say, and you can spend joyful hours accessing all the pleasure you choose for yourself.

The most controllable and universal path to that full and satisfying sex life you deserve is growing more and more comfortable with, for example, the occasional accidental kick to your boyfriend’s face because of a spasm. It happens, it’s not a problem, it’s like queefing or that time an old boyfriend accidentally ejaculated up my nose instead of in my mouth. These things happen. It’s normal. It’s even hilarious (assuming no one is seriously injured, obvs!).

There’s a section in the new book, coming out in January about sex in relationships where at least one person has a disability or physical limitation, and my publisher would really love it if folks pre-ordered a copy (US) (UK) (Canada). Me, I would love if you requested it at your local library, to make sure they order a copy!

Allow me to conclude with a paragraph about medical providers: Non-specialist medical providers may not be the actual, literal worst people to ask about sex, no matter who you are, but they’re high on the list of the worst. (If you’re a medical provider who is maybe offended by this because you are exceptionally comfortable talking with all your patients about their sexual functioning, YOU NEED TO START PRESENTING AT CONFERENCES AND PUBLISHING IN PEER REVIEWED JOURNALS.) A typical medical education in North America includes maybe ten hours of sex education, which is less than I received in my first weekend of training as a peer sex educator in 1995. My broad advice for folks with medical issues that are affecting their sexual functioning is that if you want to get advice from your medical provider, ask them not for information but for a referral to someone who works specifically around issues of sex and this specific medical issue. It is vanishingly unlikely that they might have anything better to offer. (Again, if you’re a great, sex positive medical provider who hates this paragraph, CONFERENCES AND JOURNAL ARTICLES. Also, CHANGE MEDICAL EDUCATION.)

Hope some of that is helpful! In the end, the most specific and pragmatic advice will come from other folks experiencing similar issues.

Emily

📕💻📗 And please check out these awesome indie bookstores: All She Wrote Books in Somerville, MA, Morgenstern Books in Bloomington, Indiana, and Lark & Owl Booksellers in Georgetown, TX!

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