photo by Erin Clark
I recently got a message from an orthopedic surgeon.
“I think you are some kind of oracle and everyone should follow your account, able-bodied or not. And I always think that women should talk to women about sex. But I found it quite hard to initiate a conversation like that.”
She had shown my account to one of her patients. A young woman who is also paraplegic.
“So what I wanted to do was ask your expert opinion on how to initiate a conversation like that coming from my position of privilege (being able-bodied).” Said the orthopedic surgeon.
When I was 13 and 15 and I think another time, but I can never keep it straight, I had an orthopedic surgeon. He gave me the beautiful scar down my back and the one across my ribcage. His scalpel is the reason that, if you trace your finger along this scar, I feel the sensations as a strange tickle in my bellybutton. His goal was to untwist my spine, give me more room to breathe, more room for my organs to function. He succeeded.
Additionally, I had a lifetime of doctors and physical therapists. Who stretched me, and put me in an array of devices and poked at me and wrote detailed notes about how my body worked. Their goal was to optimize critical bodily functions. I function quite well so I think we succeeded. I spent most of my life in the hands of medical professionals who knew incredibly precise and intimate details about how my body worked. And therefore I knew those details. In a way I had more awareness of my body than my not disabled peers. But never once, not even a little bit, did anyone bring up sex or pleasure. At all.
I have written about this before. I have written about the desexualization of disabled people. And recently I published a love story with a very detailed account of what sex for me is like. When women with disabilities started messaging me about how uncomfortable they felt with the idea of having sex, of finding out they couldn’t feel it, or that it wouldn’t feel good, or that no one could possibly want to have sex with them with their bodies like this - I posted a series of messages encouraging women to touch themselves. Not just to masturbate (although, that too). But everywhere.
Feed your body sensation and see how it responds. Be more detailed than all the doctors except you aren’t looking for function, you are tracking pleasure. This way you can teach a lover how to bring you the pleasure that means the most to you instead of feeling like you fail to have the pleasure you’re supposed to have. This way you can always bring pleasure to yourself. Erogenous zones can be anywhere, and arousal can happen in any way. There are no rules the body has to follow when it comes to pleasure. Paralysis doesn’t disqualify you from connection, intimacy, arousal or even orgasms. We just have to feel in finer detail, be more personal. Break all the rules. There’s no seduction sexier than that.
“How you bring it up depends on what conversation you want to have. Is she asking about sex? what is she asking about? Are they questions about body mechanics or is it more personal and emotional?” I responded to her.
“My patient mentioned that she only had some sensation in her groin and thighs and that got me thinking about an article on sex that you wrote, actually. I have another young woman who is also paralyzed and she has brought this up with me several times. But the way she doesn’t form a direct question makes me wish that I could bring some advice the way I can when it comes to what to expect from the healing process. Most of my colleagues are men and old farts (chronological or mental age) so I don’t expect much help there.”
I sent her a link to Love All The Way in which I describe exactly how sex feels to me and I feel some of my groin and some of my thighs as well. I tell her about a novel I read in which the main character is a woman who is paralyzed and has no sensation in her vagina. She has a sexual relationship in the book that describes how they connect, what brings her pleasure, it’s called 'The Rapture' by Liz Jensen. “I’m not necessarily suggesting you bring reading material to your patients, but maybe reading these yourself will help you relate from the point of view of the disabled woman, and give you an idea of how we’re exploring and accessing our pleasure and sexual experience in order to discuss it better with your patients.”
A little while passed when she texted me again. “My most erogenous zone is actually between my shoulder blades.” She said, clearly having just read my essay and sharing with me the way she wanted to open the conversation for her patient to share. "I think able bodied women and their sexual partners could get pointers from your piece as well. Plus, you’re a Sex Icon, so that title obliges you to enlighten us mere mortals. :)”
“A responsibility I gladly accept!” I replied.
My body had been molded by ‘experts', doctors who literally reshaped my bones. But I had to teach myself how to be in the body they made so that I could feel pleasure. The consent I learned to give to doctors touching my genitals, touching my body, marking down every detail of it’s shape and function, was not the same kind of consent I needed to negotiate with my lovers. it was not the same kind of attention I needed from my lovers. Affable, clinical, distant. I had to learn the difference between being a patient and being a woman. I had to figure it out on my own. So I wrote and I wrote and I took selfies of my body - of myself inhabiting my body - and I didn’t give any of it a medical label. I just wanted to feel it. To see it. Then one day a surgeon - the same kind who gave me my beautiful scars, who carved out my shape with saws and shaved my bones down with a file, and clamped it all in place with bolts and rods and screws - a surgeon just like that - read those posts and messaged to consult me, ‘the expert’, on just how she might bring up sex with her patients because she hopes they will have as much pleasure as they can in the bodies she is shaping for them.
They won’t have to figure it out alone.