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“Access intimacy is something I am coming to understand that I need in my life; something that I cannot (and don’t want to) live without. I need it to literally be my whole self because access is such an intimate part of my life as a queer physically disabled woman of color adoptee. Without it, relationships exist under a glass ceiling or split by thick frosted windows, with huge pieces of myself never being able to be reached. Without it, there is survival, but rarely true, whole connection.” —Mia Mingus
Discovering Mingus’ term “access intimacy” quite literally changed my life. But that’s a post for another time— thoughts I can’t yet elucidate, feelings that don’t map onto words.
Still, more than a year before I learned the term, I felt it for what may have been the first time in my life. Experiencing not just access intimacy, but intimacy as a disabled person, helped radically alter my identity and self-image. I think it’s worth reflecting on the role this sort of intimacy has played in my life.
The first time I felt that unnamed, fluttery feeling of being seen in my disability was during my first month at Macalester. My friend group at the time was planning a study session, and we needed a location. The current leading contender was one whose only access point is stairs. At least, we thought so at the time. I have since learned that sometimes the elevator can get there.
One of my friends— the only one of that group I still talk to— looked over at me. “Will that be ok with your foot?”
I stalled. My throat tickled with the familiar feeling of repressed tears, but I had no clue why. Did my muscles want to flee or collapse? Either way, everything was tight.
“Yeah, it’ll be fine, thanks for asking though,” I think I replied. The moment passed, the planning continued. I shoved the tears away for later.
When I would eventually reflect on that moment, I realized the truth: never before had someone, especially someone I didn’t know that well, proactively think about my access needs and ask about them. Never before had I not been the one who had to bring it up. I wasn’t being accommodated; I was being included.
That initial spark of intimacy would later grow, forming part of the basis for a romantic relationship with that friend. Though that relationship is long over, its impact on me will never fade.
True intimacy, of any kind, is messy. Because humans are messy. We try to hide in our worlds of logic and order, but at our core, we are tangles of emotion and thought and irrationality barely contained by a fragile, inconsistent, unpredictable, beautiful body.
Bringing the realm of disability into the intimacy space can only make it messier. Disabled lives are messy. Physically, spiritually, emotionally, relationally. Thus, disabled intimacy is always messy.
But that doesn’t mean it can’t feel really, really good.
Admittedly, I was once under the thrall of a certain “dating” app whose name starts with a G. G for gay, for gratification, for get some. G for gross.
On this app, physical intimacy is expected to be neat and proper. More often than not, it’s fast and uncaring, and any messiness only makes it take longer. It’s all about getting what you want as fast as you can get it and moving on.
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If you have a body/body type outside the expected norm, you can expect unusual levels of rejection and ghosting. G for ghost. You can also expect that people will fetishize you. Someone will make you feel so uncomfortable in your own skin that you want to fade away until nothing but a shimmer of dust remains.
So I hid my disability. It was easy, thanks to my pain tolerance. Keep it short, pretend not to be in pain, do the right moves, apologize for it taking too long, pretend not to be in pain, make them feel good, leave. You’ll probably never see them again. G for goodbye.
Unfortunately, this set the stage for what I expected my intimacy to look like. Bringing in that messiness would make people back away, so instead, I’d keep it hidden.
But as my first real college relationship developed, I quickly learned I didn’t have to keep it hidden. Because hiding it hurt me. And no good partner would want me to be in pain— not unless I wanted it, of course.
I’ll spare you the wonderful, shocking, glorious, messy details of all my disabled sex. But I will tell you this: the messiness doesn’t make it worse. It makes it feel perfect. And it opens new possibilities, new places to be creative.
The tendency to shy away from my pain in intimate situations started to fade. I didn’t just embrace my pain, I fell in love with it. I started to learn how to play with it, accommodate it, respect it. I tried things I never thought were possible. I made access a prerequisite for intimacy. A constant component, not something talked about once and never again. And that app, of course, disappeared from my phone.
G for gone.
Of course, intimacy isn’t always pleasure and joy. We’re messy. Sometimes there’s going to be conflict.
Now, I hate conflict. I try not to avoid it, even though my bodymind wants to, because I know it’s healthy. Conflict builds relationships. But I really do hate it.
The first time I truly pushed my disabled bodymind past its breaking point was also the first time that partner and I had a big disagreement. We didn’t fight, not really. There were no raised voices and certainly no physical violence. But the tension between us definitely caused harm.
Here’s the thing: neither of us did anything wrong to lead to this. I can’t even remember how it started. But I was in so much pain, so drained from everything I had done that day, that I couldn’t stand being around another person. My joint screamed without words, so I couldn’t ascribe words to it.
At that point, I didn’t know the term access needs, and certainly not access intimacy. I didn’t know how to say, “you haven’t done anything wrong, I just cannot stand to be around anyone right now.” And my partner hadn’t learned how to just be with someone who is in unimaginable amounts of pain.
So instead, I was grumpy, and they were anxious. That’s not a good combination. When they left that night, I felt broken in so many ways. If there was a rupture between us, I felt sure it was my fault.
It took days, but we talked it out. Started to figure out what had gone wrong and how it could go better next time. Still, I didn’t know how to talk about being in pain, my capacity, or my access needs. That would take many more months to learn.
That messiness, that conflict, led to growth. So did the messiness in every one of those moments of delicious physical intimacy. Trying to avoid the mess locks us out of some of the most wonderful experiences available to us.
At times, I still hate my access needs, especially when they interfere with sex. You don’t unlearn decades of internalized ableism in a year or two. Most of the time, though, I feel good about it. All of it. My needs, the mess, the pain. It’s all a part of me. When before I had been taught that the only way to be loved was to hide myself, now I know that the only way to love is to present myself, bare and unabashed, and hope that other people can see how incredible my disabled bodymind truly is.
Ashton Rose 