Every time I approach a topic for Where She Stands, I put it through a list of pre-screening questions. Is it relevant, do I have enough to say to write about it in length, etc. One such question is How do I feel about the possibility of a future employer seeing this? A love interest? This post is the first where that thought has really stopped me in my tracks, so to speak. For this reason, this piece has been a year in the making. I feel strongly enough that sex and sexuality is important to put voice to, specifically my sex and sexuality as a physically disabled woman, that I am ready to face those repercussions should they arise. And honestly, as a single full time student, neither of the aforementioned entities give me much of a fright at the moment. So, I’m going to throw caution to the wind and publicly write about sex, the lack thereof, and the ‘why’ behind it all. Breathe, Mom.
I’m going to be very transparent about the fact that, like most (young) people, I am still very much navigating and learning about my relationship to sex, sexuality, and existing as a sexual being while living in a gender and ability status that is historically objectified, fetishized, and erased. This piece is in no way representative of any other person’s experience, nor is it likely to still be representative of my own in a year, two, or five from now. As a reader, give me grace in this vulnerability. If this makes you feel something, fantastic! That’s part of what I’m trying to do through this platform. But in those feelings, remember there is a real woman behind the words and anecdotes.
Okay, now that we have that ~housekeeping~ out of the way, let’s get into it. I cannot talk about sex and disability without first venturing into the even more abstract topic of self love/appreciation/recognition. There is this overly-romanticized idea of the magical power of self love perpetuated by abled-bodied people: “If you love yourself, others will follow.” That is some malarkey created by someone who has experienced very little rejection. I do not mean to equate love to sex, but there is a parallel here; the idea that if you find yourself attractive and sexually capable, you will naturally exude such vibes and others will just as naturally be drawn to you and your abundance of sexual confidence. This is not my experience as a person with a physical disability. It took some time, but I really love my body, and feel sexy in how I choose to present and relate to others. I enjoy wearing a tight dress, a good bra, lacy underwear, the like. I’ve found a rhythm in my unique gait, knowing my body in its teetering femininity.
But I can love myself as the day is long, and that appreciation and attraction is not reflected in the world around me, locally and globally. This is jarring. It’s the difference between being told I look ‘pretty’, verses being thought of as ‘hot’. Furthermore, it’s the difference between someone thinking I am hot, and actually making a move. I’ve been fascinated in how people get from point a to point b since middle school, because I never seem to get to point b. What I learned though, is that it isn’t me failing in some way to move things along; it was the other person who had internalized ableism going on. I say that with kindness and understanding: disabled people have been historically desexualized in media to the point that the idea of having sex with a disabled person is still considered scandalous to even the most progressive. There is this fear of hurting me with touch, even though my body has transcended more physical pain in it’s first 20 years than some abled people do in their life’s entirety. I just happen to be on the receiving end of that manifestation of fear and stigma.
It does change how I see myself, because I begin to see myself through that person’s eyes; that lens of ableism. More simply: I can know I’m looking fine as hell in my mirror in my room, and then step outside in the presence of ableds who dismiss my sexuality, and suddenly don’t feel so worthy or ready for that either. I accept being seen as platonic because of course, says that voice in my head, the hot girl across the room has other, more graceful options. Apparently I am not the only one that feels this way, where solid personal confidence does not translate to sex and dating. In her Ted Talk, Dr. Danielle Sheypuk says “I talk about self-esteem versus dateable self-esteem. Dateable self-esteem is a term that I came up with to address the phenomenon that I frequently see in people with disabilities, and that’s the fact that we do love ourselves. We have fabulous social circles, great careers, and loving families. But when it comes to our self-esteem, our dateable self-esteem, it’s in the gutter. I mean it takes a hit...I [also] work with my clients on feeling sexy, and taking the focus off the disability, per se. One time I asked a client: “So what do you find sexy about yourself?” And I was expecting a quick answer. She looked at me, looked down, thought, thought about it, looked up, and said: “You know, I don’t know. I’ve never thought about that before.”…So people with disabilities, it’s not that we’re not sexy, it’s just that we haven’t been told yet.” In my case, I have been told. By people who still won’t cross the line into sexual touch or allow themselves to see me as an option for them, despite what they may be saying or thinking (or looking at), or the consent I may be giving. In such cases, words mean little. It reads like disabled people should have sex lives, just not with me.
Along the same lines, there is a quote “In a society that profits from your self doubt, liking yourself is a rebellious act.” But sometimes, I don’t want it to be rebellious or earth shattering or a learning moment, I want that confidence to be as approachable and materialized as the next person’s. By virtue of my disability, sex with complete strangers is probably never going to be something I want. I already know that [sex] is going to take more pre-communication with the other party(s) involved than for other people, just like my going to an amusement park with someone is going to take more pre-communication than for others. And to have the ability to have such negotiations, I personally need to know the person; I need to trust them enough with my body before just jumping in bed. In so many ways, my life is not a Ryan Gosling movie, with no scripted dialogue on mechanics; instead just flurries of bedsheets and rainy make out sessions. All of this said, though, doesn’t mean I can’t have casual sex and enjoy it. Just because I have rapport with the person doesn’t mean we have to date for five years, buy a ring and ride off into the sunset on a white horse. If I feel comfortable figuring it out with them, and they with me, let’s do it and make our own terms for what the next days look like. There’s this prevalent idea that to be with me is a commitment or an ordeal by virtue of “signing up” for my bodily differences. And I probably will go for commitment someday, but that has nothing to do with my disability. Why shouldn’t we have our fun and leave it there? Or some iteration thereof. Sex is sex is sex is sex. And from what I hear from my friends with disabilities, disabled people are disproportionately more likely to be creative and open in approaching sex and relationship structures because by definition, we are used to thinking creatively about making the world work for our bodies, so why shouldn’t that transfer to my personal life? I have 15+ plus years of experience in advocating for the needs of myself and others- just think of how seamlessly I’ll learn what you want and tell you what I want.
As you’ve probably put together at this point, I am inexperienced at this point in life. While part of that is ableism, it take two to tango. My side of it is the mechanics, and not having examples of sex icons with disabilities to model my sexual existence. Smooth, slow movements are not my forte. I cannot just “go in for a kiss”. Spasticity has a way of ruining the moment. What is meant to be a gentle caress of the cheek can quickly devolve into me just like, grabbing the side of someone’s face. As a result, I am less likely to confidently make that move. And of course, not all indications of attraction are physical, but this lack of game, so to speak, is applicable to the rest because I never got to see what a successful “can I get yo numba” looked like from a disabled woman. Because as a group, we are not seen or represented as aggressors; initiators. But as a person, Sonya, gender and ability assumptions notwithstanding, is an aggressor, an initiator that goes after what (and who) she wants. It’s hard to explain this dichotomy to myself and my friends: that I’m 21 and want it, but am also already jaded from experiences of desexualization that I will resist the urge to make that move, because I’m already steeling myself off for a rejection that hasn’t even happened yet.
Because I know that at my core I am a bit of a hunter, though, and because I’ve had chances in young adulthood to see what this feels like, I am confident in myself as a sexual being- even if that being hides a little in the face of desexualization re: dateable self esteem. I’m slowly but surely navigating self pleasure in a body where motor skills and muscle control is lacking. I’ll dance in my underwear; put myself in front of a camera; lotion lotion lotion, bath salts; the right magazine. Much like the narrative around sexual pleasure, the mainstream narrative around self pleasure (especially for a woman) is so limited to penetration, that folks who don’t have that ability or interest or (let’s be real) work ethic, are alienated. And in my case, left to believe that self pleasure isn’t an option for them. Seeing all of this on a page in front of me it makes complete sense as to why it took me a disproportionately long time to know include myself in the sexual conversation. As children, we are taught that “private parts” and touching are taboo, even gross things with the potential to be dangerous. So even though I was blessed with pretty radically inclusive sex ed starting at 15, I still sometimes grapple to let go of the idea that talking about and engaging in sexual thoughts and feelings is not somehow perverse, because I was not granted applied social allowance or inclusion to explore and indulge. I had to show myself first, with virtually no flirtation or external encouragement from peers- I had to decide to be sexual, whereas others just get to be in the eyes of the world, for better or for worse.
There is another side to disability and sexuality that is a little more hopeful. There is a serendipitous trust in asking for physical help, and a serendipitous and beautiful intimacy in receiving it. I feel closer to so many of my abled friends because we’ve navigated touch via my “special” needs that others do not call on friends for. Arguably, my closest friends are more comfortable to socially touch me, because boundaries for touch were first restructured in a context of utility and need. Drying my feet after getting out of the shower while still post op; guarding me as we make our way down busy subway steps; sitting on the floor back to back so I don’t fall over; moving my hair out of my face while I pause going up steps, breath heavy; a long walk on the beach, sun setting as a friend holds my waist in her hands.
In this vein, one of the biggest turn ons for me is automatic disability awareness. When I meet a person and I don’t even have to think about the clinical, but can just slip into social and sensual interactions because they know what to do, I’m just about ready to jump their bones. The question of mechanics, the thought of ‘going in for the kiss’, is no longer intimidating, because there’s an assurance that we’ll figure it out together, and they’re not expecting traditional grace. There is no fear in breaking me, so I have permission to be my full, spastic self. The sexiest thing I ever witnessed was while walking down the streets in Boston with a new friend who I felt the potential to be more. We walked at my pace, giggling as our fingers brushed, talking about our days. We’d hung out several times, and they knew my staunch sense of independence. Suddenly they just took my bag off my back without saying anything. My body didn’t flinch (spaz) at the touch. But, conditioned by people assuming I can’t carry my own bag, I said “I got it”. And they said softly from behind me “Oh I know you can, but I want to.” I just about died right there.
As good as it felt to be taken care of in that moment, I generally resist being consistently taken care of, because I worry an expectation that I need help managing will become the norm and a friendship or romantic/sexual option will devolve into I am delivering a service out of necessity. It is almost impossible not to become infantile in that person’s eyes at that point. And once I’m seen as childish in the eyes of someone I’m attracted to, there’s no going back. Because put bluntly, none of the people I want to fuck want to fuck a child. Almost ironically, I am a natural caretaker, and believe it is possible that one day I’ll meet someone who will see that and be secure enough to let a physically disabled woman take care of them.
If you’re still reading, I commend you. This is a lot of information, a lot of food for thought. I’m not sure how to close this one out. I vacillate between appreciating myself and finding motivation to go out and meet people via that appreciation, and feeling so drained by the realities of being desexualized that I fall into the “forever alone” rabbit hole. There are moments I put time pressure on myself, saying I won’t be this mobile and energetic forever, I should be sexual while I am young and able. But then the radical in me reminds that I will be sexual as long as I define that for myself. So if you are abled and have eyes for a disabled person, resist any urge to suppress it, and be gentle with yourself. If you’re disabled and sexually active, amazing. If you’re disabled and electively not, also amazing. If you’re disabled and ready and waiting, navigating as best you know how, I see you and believe our time is coming. In the meantime, imma be here in my little black dress enjoying my dance party in the mirror.
Today, this is where she stands.