At The Corner Of Sex Positivity And Disability

Friends, Romans, country-persons, welcome to my blog. Whether this is welcome back or welcome for the first time or welcome to what you thought was a fun, inspiring blog, but what turned out to be the slightly depressing online diary of a grown man…

As my oh-so-clever-never-before-used-in-a-pun title suggests, today we are going to talk about sex.

That’s right people we’re having the talk. Just you and me…and everyone else accessing this public internet-based website. But today is about a little more than just the birds and the bees; today we are going to talk about sex positivity and connect that to the often-ignored intersection of sex and disability. These are broad topics to tackle so let me say from the jump that this post is very much a reflection of my personal journey with sex positivity and my personal experiences with the intersection of sex and disability. While I know there are portions of my experience that are widely shared amongst the populous at large, it is also important to note that everyone’s experience with sex, sex positivity, and their intersection with disability are unique to the individual. With that said, let’s get started shall we?

I recently wrote a post about my body, how my relationship with my body has changed over time, and particularly how this relationship has changed in light of my acquiring a chronic pain condition. In that conversation, I touch on my early experience of learning about my body’s sexual capacity. It was actually the Catholic Church that first taught me that my body was capable of giving and receiving sexual pleasure, and as such, my first understanding of my body’s sexual capacity was that it was something to fear and of which to be ashamed. Lest we forget such wisdom as that of Galatians 5:17 “For the desires of the flesh are against the Spirit, and the desires of the Spirit are against the flesh, for these are opposed to each other, to keep you from doing the things you want to do.” Oh, ok. Got it. My flesh and sexual desire are a literal manifestation of all worldly evil and wrong. My body and my mind are separate and entities locked in violent, existential opposition over ruling on primitive instinct or enlightened intellect. Noted. Thank you Catholicism.

Before these lessons, it had never occurred to me that my body was capable of such things. I never had “the talk” and being in a Catholic school, I also didn’t get any sexual health education. In hindsight, I would say my first sexual experience occurred around age 7, but at the time, I had no concept of what was really happening. So after these lessons, I knew my body was capable of giving and receiving pleasure, but I also knew that engaging with that pleasure was my one-way ticket to eternal spiritual damnation. And let me tell you, by this time, I had already developed a pretty serious anxiety disorder that prompted me to take this messaging to heart in a way that most others my age could easily brush off. I can remember being 6 years old and already being crippled under the burden of existential pain.

In the 6th grade, I transferred from Catholic school to a public middle school, and it was there, in the hormone ridden-halls of adolescence that my peer-led education on sex began, just as our self-righteous neighbor, appalled by my parents decision to switch me to public school, told my mother it would happen. So right she was about those public school kids, just TEEMING with hormones and impure thoughts! For example, I remember it was in 6th grade that I first learned about masturbation. Since I had a toxic mix of curiosity and righteous fear, when I finally decided to try it, I decided to cover myself with a sheet. I figured if I wasn’t actually touching myself, God couldn’t get too upset, right? Yes, people, this is what the recipe for sexual repression looks like. I could go on forever about the growing development of my fears around sex and intimacy, but we’d all be here far longer than we feel like. All that needs said is that my fear-based education about my body, my hidden sexuality/internalized homophobia, my peer and porn-led education on sex, and my propensity of anxiety and existential dilemma all combined in a perfect storm to make sure that I grew up to be terrified of my sexual nature and ascribed shame to all of my sexual experiences.

Flash forward to the end of my time in college and the beginning of my time with Teach for America. It was then that I first started to accept that I was probably not straight (LOL). I couldn’t commit to a label; the idea of defining myself with a label that I thought gained all of it’s meaning from sexual behavior (something I now know to be untrue) was something I wasn’t even in the ballpark of being capable of doing. But I knew I owed it to myself to explore. And I thought the only way to understand whether or not I was gay was to have sex with men. That, I thought, would settle things once and for all. When I did engage in my first adult sexual encounters with men, I very much played along as if I knew what I was doing (I did not) and called mostly on the porn I had watched growing up to inform how I thought things should go (should be noted that at this time, I did not understand porn as a product, I thought it was an accurate representation of what sex should look like).

It is unsurprising, of course, that while I found these experiences to be new and exciting and pleasurable to a degree, they were also fraught with shame, uncertainty, and a lack of agency. Sex, at this point, felt less like a mutually shared experience and more like a surrendering of my body to others because I thought that is what they wanted and that is how I would gain worth and self-understanding. It was as fucked up as it sounds.

Around this time is also when my journey with chronic pain began and, unsurprisingly, it ran right into my journey with sexuality. I remember the summer I spent in Mississippi completing my Teach for America training well for a number of reasons, but especially for this. At the time, I was running and lifting every other day to try and work through the stress of our training. I was also embarking on my first “relationship” with another man. Over the course of our few weeks in Mississippi, I started to notice more and more pain in my right hip that started to radiate throughout my body. I had injured myself several months prior during my senior season at Boston University, but I thought by now the injury would have surely healed. As my pain grew worse, my ability to exercise decreased. The pain also brought on intense nausea that would leave me unable to eat for days at a time. And to make matters as damaging as possible, it seemed like each sexual encounter I had in Mississippi increased my symptoms tenfold. Each orgasm tightened my hip to the point of blinding nausea until I finally decided I couldn’t have sex anymore. The pain was too intense, the after-effects too long-lasting.

And it stayed that way for several years. It got to the point where even getting hard was painful. Orgasms sent shockwaves through my body, like a lightning bolt from my hip all the way up my torso into my neck and sometimes even into my jaw. And so I avoided sex altogether. I stopped masturbating. I stopped watching porn. I gave up on dating. I stopped thinking of myself as a sexual creature and resigned to the idea that sex would always be painful and no one would ever want to be with me if I couldn’t offer them sex. I thought about how unfair it was that I was finally in a place where I was “comfortable” with exploring my sexuality (HA!) and now I was incapable of having sex. Figures, I thought.

It was in this period of time that two formative things happened. First and foremost, I started to experience pain, LOTS AND LOTS OF PAIN. My physical pain seemed to spread and grow with each passing day and my ability to do any of the physical tasks I used to do started to diminish. At first, it was just that i couldn’t lift as heavy or run as far. Eventually I could barely walk more than 10 minutes without crippling pain and I was struggling with daily activities. My physical pain eventually became emotional/mental pain as I struggled to try and identify/treat the source of my pain and cope with the loss of identity that came with the loss of my physical strength and capability. I began to wrestle with the idea that I had acquired an invisible disability that was completely changing my life and my perception of who I thought I was. Additionally, my acquired disability was fueling the negative understanding I had of sex and physical intimacy as I viewed my body as broken and damaged and incapable. As a result of these things, I sought help through therapy. My identity and my body were crumbling and I didn’t know how to move forward. I needed help.

I told my therapist I had sought mental health services because of my chronic pain and it’s impact on me, which is true, but it didn’t take long to reveal that in addition to struggling with chronic pain, I was also closeted, had a whole lot of internalized homophobia/self-hatred, I had an intense fear of intimacy, and I was battling some moderate to severe anxiety/depression. In short, we had a lot of work to do. And so we got started.

PHEW. We’re almost at three full pages and I’m just getting to the point, this is definitely a new record for me talking around a point. But I digress. I have been with my therapist for four years now and in just the past year alone, I have made some major progress in terms of understanding my identity, managing and understanding my chronic pain, and processing the multiple facets of my sexual identity. Those realizations are what I want to share with you. They are separate realizations and ideas that I am finally starting to put together into one whole picture, which is pretty fucking cool.

To start, as it turns out, exploring one’s sexual identity does not require them to have sex. Groundbreaking, I know. But before I really understood the structures and facets of identity, I thought that I had to go have sex with men to determine whether or not I was gay. While sex is certainly a part of that identity, it is just a part. My coming out and my understanding of my identity and authentic expression of my queer identity has indeed come, in part, from my physical, sexual experiences, but it has also come from the work I do in HIV prevention, it has come from reading radical queer literature, it has come from my connections and conversations with other queer individuals. It is a holistic mash-up of all these experiences and is in no way fully defined by any one set of activities.

Moving into the realm of my disability and its impact on my sexual self, there are several challenging realizations that have come up. One of the most challenging is an idea posed by my therapist. Kate often explains that pain is our body’s way of communicating. She encourages me to approach my pain with curiosity and to explore the messages my body is trying to tell me. She also explained that our bodies are capable of processing emotions when they are too overwhelming for us mentally. She often uses the example of my flare ups that come from stress saying that my mind/body agree that it is easier to attempt to deal with physical pain than the emotional pain that has overwhelmed me. You can research this phenomenon and find a number of cases where individuals with a history of sexual trauma or emotional trauma develop unexplained physical pain during sex. This has been a theory I have been resistant to settle into, but over time, I see more and more truth in it and more and more healing as I attempt to process through this lens.

Tying together the concepts of sex, sexual identity, and disability is my work in HIV prevention. When I left my career in teaching public school a little over a year ago, I had no idea what I would do next. I figured I would get into a nonprofit somewhere, but wasn’t exactly sure what that would look like. It just so happened that an opening as an HIV case manager became available and that just so happened to be the job I got. In hindsight, I think the universe and my subconscious were pushing me towards this work because I knew I was uncomfortable with sex and I knew I would be forced to continue delving into the work of parsing through that. I had no idea how positive of an impact the work would make. Working in the field of HIV prevention has forced me to see and understand the impact that sexual shame have on individuals. Not only that, I began to see the stigma my clients faced as a result of their HIV status and I began to relate some of my experiences with chronic pain to those that my clients faced. While vastly different, we both dealt with a chronic condition, the burden of disclosure, treatment, the feeling of being “less than” as a result of our conditions, and sexual stigma and fear. As I began working to empower my clients, educate my community, and diminish the impact sexual shame had in their lives, I began to do the same for myself.

As my passion for fighting sexual shame grew, I knew I would need to educate myself as much as possible so that I could be the best advocate possible. It was in my research that I began to truly form my frame of reference around sex positivity and expand my understanding of sex. It started with Dossie Easton and Janet W. Hardy’s The Ethical Slut. This guide to open relationships walks readers through any number of concepts like the reclamation of the word slut, opening existing relationships, navigating jealousy, and the difference between ethical and unethical sluthood, amongst many others. What has been most impactful for me, however, has been their thoughts on sex and pleasure, namely the reframing of what sex is. I remember first having my interest piqued when the authors presented the following:

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"In our combined half century of work as sex writers and educators, we’ve found that the more we learn about sex, the less we know about how to define it, so now we just say the truth as we know it: sex is part of everything. More pragmatically, we have had long, intense intimate conversations that felt deeply sexual to us. And we have had intercourse that didn’t feel terribly sexual...what constitutes sex - does it really always require an erection? And orgasm? An ejaculation? Our best definition here is that sex is whatever the people engaging in it think it is."

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Well damn, my narrow mind was blown. How could you have sex without an erection or an orgasm? That’s not what I learned in middle school sex ed. That’s not the sex I saw in the porn I watched growing up. To me, this was radical. Radical in the most positively transformative way. I could go on forever, but I already have so I’ll leave you with another quote that I think sums up the message of expanding our perception and understanding of sex:

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"The word “sex” gets used as though everyone agrees on what it means, but if you ask people what they actually do when they have sex, you’ll hear about a huge range of behaviors and interactions. Sex may involve these parts [lips, nipples, clits, cocks, and orgasms], but we don’t think it’s about them. Sex covers a much larger territory than genital stimulation leading to orgasm. Sex that is limited to perfunctory foreplay and then a race down the express track to an orgasm is an insult to the human capacity for pleasure. When we expand our concept of what sex is, and let it be whatever pleases us today, we free ourselves from the tyranny of his hydraulics, the chore of getting her off, perhaps even birth control and barriers, if we decide outercourse is perfectly good sex in and of itself. Pleasure is good for you. So do what pleases you, and don’t let anybody else tell you what you ought to like, and you can’t go wrong."

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The idea that I have agency in determining not only what I find pleasing in terms of physical stimulation, but in defining what sex is an is not to me has really rocked my world. The realizations from The Ethical Slut were recently reinforced by a quote I read by sex educator and author Charlie Glickman:

And this is where it has all really come together for me. These realizations have fundamentally shattered my binary and antiquated concept of sex, sexual capacity, and sex positivity, and I am so thankful for that. When I understand sex positivity and the very concept of sex in general through these lenses, it becomes clear that sex positivity and expanded sexual thinking are the most important tools I could ever have as a person with an acquired physical disability that sometimes makes sex painful. Expanded sexual thinking and a culture of sex positivity allows us to determine what is pleasing to us at any given point and gives us the freedom to seek that out without fear of judgment or repercussion. So much of my angst about my disability’s impact on sex stemmed from the fact that I thought my disability would preclude me from having a healthy sexual life. In reality, now that I am able to think beyond these very stringent and socially reinforced boundaries about what sex is/should look/feel/sound like, I am able to see the ways in which I can empower myself to create the sexual life that is most pleasing and comfortable for myself. In that realization is the realization that I need not compare my concept of sex to anyone else’s insofar as no one persons concept or understanding of sex has any more or less value than the other if it is truly what is most authentic to the individual. Who knew I had so much power!

All of these realizations are fairly new and they have all just sort of converged in my head. I don’t know what an authentic and healthy sex life looks like for me in this moment. I really don’t. I am still learning about my pain and its impact on my body. But I feel so much more confident moving forward knowing that I have the power to build the concept and execution of a sexual life that suits me. I know that the world does not always operate this way, and I know that our society continues to reinforce a narrow, binary set of expectations around sex and what it should be. And so I know it won’t always be easy, and I now I will encounter pushback, which will challenge me to be open and honest and steadfast in seeking what I want/need - a skill I am working on and one I think disabled people tend to struggle with, but to be honest, I have never felt more powerful than I do right now. I hope after reading this literal novel that you feel some of that too.

Peace and love,

Adam