In the months leading up to marrying my husband, I found myself worrying more and more about sex. In my mind, I would have to have sex once we were married and there was just no way around it. This concept was so ingrained in me by a society that associates any sort of long-term romantic commitment with physical intimacy, that I never even stopped to question my belief. Instead, I worried endlessly about how my body would handle this new physical activity, if my body could even accomplish such a thing.
I was living in a body that was far too dysfunctional to have sex with ease. I went through my days in severe chronic pain, resonating from my lower spine and what we think is an injury to my spinal cord. On some days, just sitting up in bed was too much for me. Riding in a car was one of the most painful activities I had to do, because the bumps, stops, and turns all jostled my increasingly unstable spine. If I pushed through my body’s early signs of discomfort, the pain would slowly grow until I would black out. I’d spend days stuck lying flat, trying to calm the muscle spasms and sharp lightning pain that spread through me. Narcotic painkillers would help my pain, but they could not mask the damage done to my body. So even with relief I would find myself with legs that would not move when I told them to, hands with tremors, and muscles that shook and spasmed with every movement.
How was someone like this supposed to have sex? No matter what creative solutions I spun in my mind, it was doomed to be a “high impact” activity, likely one that would leave me bed bound for days. So, when the time finally came, I wasn’t surprised to find myself in uncontrollable pain afterwards. I curled up on the bed, took my pain killers, and tried to will the muscle spasms to stop, but of course, I had little control over what my body was doing.
My husband and I mutually agreed that the price I paid after sex was not worth it for either of us. He hated seeing me in so much pain, and I couldn’t bring myself to desire an act that left me feeling so miserable. There was no pleasure in this kind of intimacy for us, just pain and tears. So, we made the decision not to have sex, despite being married. It’s not that we don’t find each other physically attractive or that we don’t occasionally desire it the same way everybody else does, but rather we have come to realize that there are other physical ways to show our love for each other and we are okay with that.
For months I lived with a ton of guilt on my back. I felt like this decision was my shameful secret. I was a wife who could not fulfill one of the most important “jobs” of a wife. I felt like I was failing my husband in this way, like I had stolen something from him by marrying him despite my malfunctioning body. Perhaps worst of all, I felt completely isolated in this problem, as I knew of no other couple who was married but not able to be physically intimate in this way.
My toiling emotions weren’t helped by the well-meaning disability activists who touted their mantra, “disabled people can have sex!” This caption usually accompanied a photo of a disabled body showing off their curves in some form of sexy undergarments. It spoke of the incorrect stereotype that permeated our culture; the concept that disabled people are inherently innocent and asexual. In the captions under these photos, activists pressed on about the sexual identity of disabled bodies, sharing with the world that their dysfunctional bodies did not make them incapable of sexual acts. They would say that sex was possible for everyone, as long as they got creative! And each time I saw these posts, my heart broke a little bit more.
What was I doing wrong? Why couldn’t I overcome my physical shortcomings by some creative placement of pillows or use of toys? How had I failed so miserably where literally every other disabled person had succeeded? So, it went like this for months. Me, feeling miserable and like a failure of a wife, and other activists, sharing their empowering photos along with the solid belief that yes, they too could have sex.
Finally, the guilt was just too much for me to keep hidden away. So, I reached out to another friend with my condition who had been married for several years longer than me. I asked her how she managed to have sex while living with such terrible spine problems, and if she could tell me her secrets. I told her how I hadn’t had sex with my husband since getting married, and how horribly guilty I felt. I just couldn’t hold it in any more. I needed the magical secret to having sex with a disability.
I didn’t get my magic secret though. Instead, I found someone just like me. Her and her husband had stopped having sex when her condition progressed as well, and she had been living with the same guilt for years. So, I wasn’t alone! There were others like me! Both her and I were relieved to find our stories weren’t all that different, and that our guilt was misplaced. It was understandable that we weren’t able to be physical with our husbands in this way. Some disabled people can’t have sex.
After the initial relief wore off, a thought struck me; how many more of us were out there? How many disabled people living in guilt because they could not accomplish these things? How many of us hid our secret shame? Why didn’t we talk about this more?
So, I’ve spent months thinking about this problem, trying to figure out how best to approach it. I didn’t want to invalidate anyone’s experience, but I also didn’t want to exclude anybody from the conversation. In the end, I came to the conclusion that really should’ve been obvious to me from the start; disabled people all live on a spectrum of sexuality, just like everybody else.
I, and many others, have made the mistake of assuming that the pendulum always swings to one way or the other. For the vast majority of the culture, disabled people are inherently viewed as not sexual, incapable of having sexual thoughts. We’re viewed as innocent and almost child-like in our behavior, or just considered to be too physically “broken” to have sex.
In the disability community, we have swung too far to the other side. We want to shout from the roof tops “disabled people have sex!” because we are so tired of being treated as though we can’t. Activists post their sexy photos and talk about the fact that every body is a sexual body. They talk about different ways sex can be accessible and say that there is always a creative way to go about things.
Neither of these extremes are right, and they never have been. The problem with generalizing the entire disabled community is that you will never be 100% correct. In the same way that you cannot assume if someone is straight or gay by looking at them, you cannot assume that a disabled person can or can’t have sex. You can’t cut people out of the conversation just because they do not fit your narrative, because your narrative will never be right if it does not involve everybody’s voice.
So, after months of feeling guilty, I have learned exactly what I want people to know about disability and sex. Every sexual experience, or lack of, is valid. Every body has its limits and for some people those limits mean they cannot have sex. That’s okay. There is nothing wrong with you if you don’t fit into society’s mold of who you should be, or if you don’t understand what activists are saying when they say, “every disabled person can have sex.” Your experience, whatever it is, isn’t unique. There are others out there going through the same thing as you, they just aren’t talking about it publicly, which is perhaps the greatest loss.
Some people have told me not to talk about my sex life, because it isn’t anybody else’s business, and they’re right. I could never talk about this publicly and I would be perfectly in the right, but I also wouldn’t be setting a very good example of what I think a real activist should be like. A real activist shares their story, not out of obligation, but because our stories help others feel less alone. If we were all a little more open about our sexual identities, I wonder how many guilty hearts we could ease.
So here I am to share my experience with sex. I am disabled and I can’t have sex. What about you?