Heads up, this is a personal post about my own sexual evolution before and after my spinal cord injury. Like the podcast series on sexual function which I participated in for U2FP, this is a frank and honest reflection on my own sexuality and how I am coming to understand it as a woman with a disability. I hope it resonates with you and continues to motivate researchers & scientists working towards improved sexual function for those of us with an SCI.

We’re all born with an essence that we carry into the world, pieces of our spirit that are just innately us. For me, I think I came into this world with a sort of passionate, look-harder, reach-higher, take-the-little-blue-pill-and-see-what-happens kind of spirit; a curious and daring nature.

Fortunately, my exploratory spirit was grounded in a strong foundation of love in my household that I trusted. There wasn’t that common glaze of shame that many of us have endured and absorbed throughout our lives, especially as sexual beings. Somehow, thankfully, I grew up largely unscathed by any trauma which could have dampened parts of my curious nature, and I was lucky, and moreso, privileged. Only since my injury have I realized that something as vital as my sense of self, personal power and sexual prowess could be quickly squashed, not only by the loss of my body and my independence, but by also feeling, ultimately, unseen.

I suppose I was an early bloomer. I started “exploring” when I was probably in 2nd grade. Well, let’s be honest, I was lightly exploring and playing “doctor” with friends before that, and got busted with my friend Nikki once — her mom caught us giggling and diddling in the closet. But what I remember most was my mom talking about it with me on the way home, and how kind she was about the whole thing. She made it abundantly clear to me that she didn’t want me to feel badly about anything. There was no shame or fear or manipulation. I remember her reassuring me that it was ok, that there was nothing wrong with it. I felt so loved in that moment.

As I got older and more curious, I had a great time exploring. This form of self-exploration was fun and exciting. I was the master of my pleasure. It was eye-opening, healthy, and built my confidence and identity as an independent, empowered young woman. By the time I was 27, I’d relished in a liberating and fun sex life for over 10 years. I’d been clocking orgasms and exploring pleasure and connection through physical intimacy for even longer. I loved my sex life. And as a dancer and yoga teacher, sensuality, movement and my body itself were a huge part of who I was and how I interacted with my world. My body was a sacred and sovereign place to return to when I needed to retreat from my mind and translate my thoughts or things that the outside world delivered, good or bad.

And then on July 4th, 2012, I was injured. My sacred and sovereign flesh felt as if it was torn from me. I immediately felt detached from it after I dove into the water that night. As a C6 quadriplegic, I was forced to let go of my former reality and explore a new body, a new world, a new home within myself — one in which I can’t move, let alone feel, in the same way. All the while, I was learning to fight against a culture that puts me, as a person with a disability, at the bottom of the totem pole in terms of defining sexy. 

Beyond the trauma of my accident, I was suddenly met with an onslaught of disability microaggressions. These stressors of feeling unseen — in many areas of disability life — from inaccessibility to invisibility to inequality and beyond, collectively brought forth their own traumas. And I felt my curiosity, my trust in life and my sexuality not just slipping away, but disappearing into a deafeningly silent abyss. I still felt that fire of my sex drive — which actually felt exactly the same — but pleasure, orgasm and sexiness seemed out of reach.

All of a sudden, I wanted to be shamelessly checked out again. Objectification became something I missed. I yearned to feel lusted after and be obnoxiously gawked at again. How shallow was I that, ironically, after years of annoying and insulting objectification, I now somehow missed it? Now, this separation of body from self became hurtful and insulting in a totally different way. Instead of being uncomfortably stared at out of lust or admiration, I was stared at out of sheer human curiosity or, worse yet, pity. Or, I was skimmed over in the crowd, casually disregarded. After my injury, I felt assaulted by ableism regularly. And it all made me question my sense of identity.

There was so much to understand and unwrap when it came to ableism, including my own internalized ableism and the culture that had shaped me and my ideas of self-worth, sexiness and sexuality. Because now I was the one in a wheelchair, and my preconceived notions and misconceptions as far as what it meant to be sexual in a disabled body were their own form of self-inflicted daily assaults. I could no longer live and thrive, sexually or otherwise, within the constraints of an able-bodied existence. I needed to change the narrative, own my disability, and get curious again with my still-sacred form. There was a level of self-acceptance that needed to happen, and it was a bigger leap than I had ever taken on any dance floor. 

For the longest time, I just didn’t know how to get there. For five long years, I didn’t have sex. I was too afraid and wounded. And I felt more vulnerable to judgement (or any other form of harm for that matter) than ever before. It was as if I was there for the taking, emotionally and physically, if I were to put myself in that position. And even though I so badly wanted to, there were too many questions and even more fears caging me from my beloved curiosity. 

And then, on a weekend to go visit an old “friend,” it finally happened. I lost my quadginity. I felt cared for and safe; desired and sexy. It was wonderfully strange — I immediately felt this renewed sense of empowerment. So many questions were answered. And even though I didn’t get some of the answers I wanted, I didn’t expect those answers anyway. I knew I wouldn’t feel him inside me the same way and I knew I wouldn’t climax, but it was more than I expected. Sex was still fun and pleasurable. It felt good in a completely sensual and exciting new way, and we all know how erotic new can be. Did I suddenly have a leg up (literally) on all the able-bodied normies? This was revolutionary.

This was an awakening. Post-injury/disabled sex brought me back to life in many ways — I wouldn’t dare tell him that, for obvious reasons, but it was true. The whole experience gave me back some of that much-needed sense of prowess and empowerment…and possibility! It reignited something in me that I had lost and so gravely missed. Something that was traumatized and hiding away, protecting itself in a place that felt safe. This was one of the first steps toward owning my sexuality again — not just thinking I’m sexy and merely accepting my body, but knowing I’m sexy and loving my body (thank you forever, Sonya Reneé Taylor).

I’ve been slowly but steadily relearning to see my body without the harmful narrative, without shame or judgement, and without confining ties to the able-bodied sex I’d been having. I’m discovering what feels good in this body, finding new pathways to pleasure, without feeling like it should be something else, like I should be someone else. I’m trading in comparison for discovery, which sometimes feels impossible, but nonetheless, vital. It’s all wild and scary and weird, but it’s also completely liberating, this return to trust, to play, to myself.

(Special thank you to Regan Linton for influencing and inspiring this piece. Big love.)

PS - U2FP will be dropping their latest podcast interview with Rutgers University neuroscientist and orgasm researcher Barry Komisaruk at the end of this week. Dr. Komisaruk presented at our Symposium. He has made surprising discoveries around how orgasm works in individuals with SCI. Stay tuned!