This post is about my experience of uncovering limitations related to being a disabled top, and figuring out ways to adapt my kink life so that I can honor my current disabled reality. These are some of the things I’ve grappled with, some of the strategies I’ve tried. I’m in the middle of this process, and I do not have all the answers. I am speaking from my own specific experience here and don’t speak for anyone else. I urge you to seek out many disabled kinky voices, perhaps starting with my resource roundup on kink and chronic pain.
Our Image of Tops in Kink Communities
I want to begin by talking about the expectations that we have of tops in kink community. For me, this set of images from one of my favorite t shirts is a good reference point for that, so I want to start by asking you to check it out. (Image description below, based on the one done by fellow panelist Seeley Quest on the day of the panel.)
A series of 12 images on a green background depicting a dinosaur or perhaps a large lizard.
Top row: In the first image there’s snoozing time, and an alarm clock going off. In the second image there is an image of our friend reading the newspaper with a cup of coffee. In the third image our dinosaur friend is walking toward a cityscape with a lunch box.
Second Row: Our friend goes amuck a bit. First image is of growling and roaring. Second image is of our friend biting what appears to be Mothra in half, and there’s a wrist watch alarm going off. In the third image our friend seems to be pausing and taking a lunch break and biting into a sandwich, and looking at an entertainment device.
Third Row: There’s more busting up of fellow antihero nemesis’. First image, there’s a head being pulled off of Frankenstein. In the next image there’s a helicopter and it appears to be skewered for BBQ and nom nom nom. And next panel there’s sundry snacks of human figures and a bus and other vehicles being consumed.
Fourth row: There’s fatigue in our final set of images. In the first image our large Godzilla friend is walking away from the city carrying the lunch looking exhausted. In the second, our friend is finishing the evening by brushing teeth and looking in the mirror. In the last image our friend is sleeping in an eye mask cuddling a teddy bear.
This set of images is a really good framework to use to discuss the image we have of tops. When we imagine tops in kink community, we often only imagine them as the third row: stomping on cities, huge and powerful, and scary in a really exciting way. We don’t imagine the other pieces, where tops set our alarms for a lunch break. Maybe we’re diabetic and have to eat every three hours, like me. Or maybe we’re exhausted after a long session of playing and we need to go to bed and are completely wiped out. The pieces about sitting at the breakfast table and reading the newspaper also aren’t included in our image of tops, our fantasy of tops.
In my experience, that limited image of what tops can be is really pervasive in kink culture. To give an example: I was at a kink event, and these two bottom-heavy switches were flirting with me. I was wearing a t-shirt that said “It’s time to slap somebody.” They looked at me and said, “Isn’t it always time to slap somebody?” They were certain that I literally live in wait to slap people, all the time. Or at least, they thought that was a really hot idea, and they were really hot for that, and thought I would be hot for them because they were saying that. Actually, the first thought I had was “Oh my G-d that’s so exhausting.” The idea that I would constantly be ready at any time to slap somebody as a top made me want to take a nap.
I get the fantasy of the all-powerful, all-knowing top that’s always ready and always in control. I have the fantasy too. Sometimes especially when I’m exhausted from dealing with a fuckton of ableism all day. Or when I feel really powerless against a medical system. Or when I just want the pain to stop eating my life. Those are some of the times when I fantasize the most about being the all-powerful, always-in-control-of-the-universe monster that’s going to take over everything. It’s seductive, that fantasy, for me too, the idea that I could be that monster all the time, never feel helpless or frustrated or vulnerable or scared or unsure.
It also is not possible.
I’ve spent a long time in kink community as a top, trying to see if it was possible. Fantasizing about it, wanting to build relationships that way, trying to, and not being able to sustain it. I will always remember one particular moment of being in a Daddy/girl relationship. I needed rather invasive inpatient surgery for an ongoing pain condition that had lasted a decade. One of the first things that happened as soon as I got home from surgery was that my little girl wanted to be comforted because her Daddy had just been in the hospital.
Because I was supposed to always be on. That was my job. That was what we had set up. Because I thought that was supposed to be my job as a top. I thought I was supposed to constantly be the one that makes it ok, that comforts and cares for and nurtures; I thought that was what it meant to be a Daddy. That as a Dominant, I was supposed to always be in charge and taking care of things, taking care of the people that were submitting to me. That I didn’t have needs that I might ask for submissives to meet, or take time out to meet myself. More accurately, I thought that as a top, I shouldn’t have needs.
That image of what it meant to be a top harmed me, and harmed my kink relationships, for many years. I personally think it’s not sustainable, for anyone, even if you aren’t disabled. But as a disabled top, I have found it impossible to be on in that way, without also having to take a break and have a sandwich, or rest, or have a part of my life where I am not on as a top, and am just reading a newspaper. I know I’m not alone in this.
I need to have it be ok that I have a migraine and we can’t continue the scene right now. It needs to be ok for me to take a break and eat something to manage my blood sugar. It needs to be ok for me to say I’m in too much pain to process the important thing that happened in our kink life, even if my partner is upset about it. It needs to be ok for me to have regular time off to tend to my mental health. It needs to be ok that I adapt my play and my D/s to my spoon levels and pain levels and capacity in the moment. It needs to be ok if sometimes I just need to lie down and be in the quiet dark stillness. In my sense of it, my job as a top cannot be and does not need to be about being on all the time, being all-powerful all the time. We can have mutual support within the D/s exchange. We can have mutual support within a scene. I need that kind of support, as a top.
Being Disabled in Kink Community
For a long time, my own internalized ableism, and the ableism in kink culture, led me to believe that I couldn’t be in my disabilities and be part of kink community. That I had to act like I wasn’t disabled, in order to show up. In order to be here. And I did that for a while. Then I hit a wall. I wasn’t able to sustain that attempt to pass as non-disabled. I couldn’t do that anymore. My disabilities increased, and I just couldn’t do it.
I ran kink events, doing a substantial amount of teaching and kink education programming for about 7 years. That was a huge part of my kink community life in NYC. At the pinnacle of that community involvement, I was doing programming for a large kink event, a weekend event where we had over 100 classes. I found myself at an event that I was helping to run…where I couldn’t go into the dungeon. Because of the way the lights were, and the sound was, I literally could not be in the dungeon.
I was at the event, with a horrible migraine that lasted the entirety of the event, and I was unable to be there for most of it. I had put together this amazing set of workshops, many of which I was excited about and had planned to be at, and I attended maybe 3 of them. And that was hard, was pushing it.
I didn’t play once in this beautiful public dungeon that a lot of folks who ran the event thought was completely accessible…because a lot of folks could get in the door. I couldn’t be there. I realized that I needed to make a change in how I was thinking about kink community and who I was in relationship to it. I’ve been working toward that change for the last several years.
Accessing My Kinky Desires
When I sit across from someone and we’re negotiating play, and they say, “do you want to play in public, or do you want to play in private,” that’s a more complex question for me than it is for some folks. I sit there and I hesitate in my answer. Then I get worried that they think I don’t want to play with them at all. Because the answer is complicated.
I played in public for years. That was the main way I played, was a huge part of how I was connected to kink community. But public play spaces are not, on the whole, accessible for me. Not anymore. And playing in private has another set of difficulties that can feel just as insurmountable and difficult, and need conversation and negotiation of how to work with them.
I love thud. One of my all-time favorite arcs for a scene is to begin by throwing someone against a wall and punching them and kicking them until they are dizzy and aching from it, and then fisting them. My body can’t do that, anymore. Not in the way it might have been able to before. Even if I have the kind of brick wall I love, the kind of industrial space and cement floors I ache to kick the bottom around on. Even if I have access to a public play space that doesn’t have stairs I can’t climb, or flashing lights and music that’s going to give me a migraine. Even when all the other pieces are in place, my body can’t do that.
So I need to shift (and I have shifted) my own internal image of the arc of a scene. I need to take a break, and have a sandwich. I need to move the scene through a different pace. That’s not just something for me to shift. I need my partners to do it with me. Because I can’t do that long intensive thing that culminates, the traditional arc that most folks think of as the way we play. Even if that’s what I fantasize about.
Similarly, there are some kinds of play that I can’t do anymore, that I love, that are core to my desires, because of my psychological disabilities. It’s not possible. I can’t do Daddy play anymore. It doesn’t work for me. It’s too triggering, and it fucks me up, so I made the choice to stop doing it. I can write Daddy porn. So I do that instead. That’s my way of accessing those desires.
For me it’s about holding both pieces, together: the piece about how it’s a loss to not be able to do what feels so good and important and precious to me, and the piece that’s about the creativity that we all have as disabled people, as kinky people, to figure it out. To figure out a different way to do it. Both pieces are there, are part of my experience.
Engaging With Kink Community and Culture Through Writing
I can’t show up in person most of the time, but I can write. I can write visions of kink communities that are more accessible, write blog posts that challenge this limited concept of tops. I am writing them, a whole slew of them, in fact.
I can write porn stories that center disabled and sick characters. I can write them because I want to shift our kink cultures. I can write them because I want to read them. I can write them because I want people to find me, people who want to have conversations about how we can shift our kink cultures and what our lives are like in kink communities now.
I can and I am writing those stories. I am hoping to get them published. I recently put together a collection of queer kink erotica that includes my latest work that centers disabled characters, that is tentatively titled Show Yourself to Me. I’m currently in conversation with a publisher, so I have real hope that this work can get out there soon. I’m also in the middle of writing a novel that centers disabled characters. It’s called Shocking Violet, and I’m really excited to dive back into it soon. It, like much of my new work, imagines disabled kinky queers in community with each other, including activist communities. It feels so hopeful to center these stories in communities, to envision what accessible kinky queer communities might be like, what I want them to be, dream they could be.