Disability, Self Esteem, and Sex

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This post has been hard for me to write. A lot harder than I expected it to be. I’m not sure why. It might be because I’ve never shared something quite so personal online. Or maybe I was worried no one would care. Or that I would write it poorly. Or some tangled combination of the above. Regardless, I desperately wanted to write this post. It felt important. And once I started actually writing, it was freeing.

(What I’m really saying is it would be accurate to picture me blushing all the way to my fingernails and giggling every time I mention masturbation. SPOILER ALERT.)

So, when I was two I was diagnosed with Spinal Muscular Atrophy Type III (a form of Muscular Dystrophy). That same year I was given my first power wheelchair and I’ve used it ever since. I’ve been in it full-time since I stopped walking at six. I’ve literally used a wheelchair longer than I can remember.

A few years after that in elementary school, I’d spend every summer afternoon with my nana. We’d eat sourdough bread and chunks of cheddar cheese for lunch, then watch The Young and the Restless together. This is how I know it was in elementary school I first masturbated with intent (not just rubbing up against pillows like, “huh, that’s fun,” which I also definitely did), because my first fantasy was an extended sex scene from the show.

I’m telling you this for two reasons: 1) I think it’s hilarious that I was writing erotic Y&R fanfic in my head when I was eight or nine and 2) I’ve had some sense of my sexuality for a long time.

That early experience of “sexual awakening” or whatever was pleasant and only a little confusing. I didn’t think much about it. I didn’t even know what sex was, not really. Once at recess, some classmates asked if I did. I, being the know-it-all I am was, said, “Yeah, of course.” They pressed for a definition. So I made an educated guess: “It’s when two people are naked and they kiss.”

As I got older I gathered that “touching myself” was shameful and I became ashamed. I realize that’s not a unique occurrence. Masturbation (and sexuality in general), particularly for girls, is widely stigmatized. But on top of that stigma, I had this body that was utterly different from the bodies around me. It was different and therefore wrong. As early as middle school I’d figured out that my body was worth less than others’. It felt like more than that though.

My body felt wholly worthless.

Even when I’d look in the mirror and think I looked passable, or even good. Even at prom, when I thought I looked gorgeous (not a word I used lightly with myself), it was hard to imagine anyone else would think so. It was impossible to imagine anyone finding me desirable. Impossible to imagine anyone looking at me and being physically attracted to me.

It didn’t help that no one (that I know of) did.

At the same time, I still fantasized and had fun on my own (though that got more logistically difficult as I got older and my range of motion decreased). Of course, I still felt massively ashamed about it, which sucked. I remember watching some show where the character started hearing peoples’ thoughts. I went, “That would be AWFUL. What if someone heard me thinking about sex?” It’s a silly example but I was truly terrified someone was going to figure me out, somehow. Since no one else expected me to be sexual, to have sexual desires, to act in a sexual way, when I did I felt like a fraud. Like I was a deluded kid playing at something explicitly not meant for me.

It wasn’t until late in college that things started to change. But I have to share two specific experiences to show you how that change began. It’s one of those “gets worse before it gets better” deals.

My freshman year, I fell pretty quickly for one of my best friends. I knew he didn’t like me, but I couldn’t help hoping. This was college after all. Anything could happen! (Cue Ellie Goulding). I mean, all those late nights/early mornings in his room, drinking root beer, playing Mortal Kombat. Maybe miracles did happen, right?

One night, a group of us had gone dancing. After, he complained the night wasn’t as fun as it could have been. I asked why.

“The ratio was off,” he said. The other guys in the group all nodded. “Four guys and three girls. The ratio wasn’t balanced.”

I was a political science major, sure, but I could count to four. And there were definitely four girls.

“Yeah,” he said, when I noted this, “but you don’t count.”

It was the first time anyone had ever voiced what I’d always known and tried to ignore: I didn’t count. Not as a potential partner. Not as a woman. My body was worthless. Something I’d always believed spoken aloud by the boy I was falling for. I’d like to say that I got mad, pissed even, that I called him on his bullshit and demanded the respect I deserved. I didn’t. I let that insidious lie (you’re worthless) bury even deeper into me.

My sophomore year, I met another boy. We too became fast friends, though I didn’t crush on him. Until one day he said, “You know, Kayla, if you weren’t in a chair, I’d totally date you.”

Do you want to know how fucked up my body image was? How completely I’d let society define me and devalue me based on their how they viewed my body?

I said, “That’s the nicest thing anyone’s ever said to me.”

Yeah. That happened. Definitely not my proudest moment.

There wasn’t a specific moment when I decided to screw society. When I decided it was okay to love my body. When I decided it was important to love my body. I’m still working on accepting that someone else someday will love my body too, you know, in a sexual way. Somehow, though, over the couple of years following that awful low point, I changed. I worked deliberately at digging all the traces of that lie (you’re worthless) out of me.

(And my sex life got exponentially better once I bought a vibrator. Eliminated many of those pesky logistical problems. Yay for technology!)

Now, I’m 23. I’m still a virgin. I’ve still never been kissed. I still haven’t met anyone who’s interested in me romantically/physically. But it doesn’t matter quite as much anymore. I’ve come to accept my sexuality as a legitimate, important part of my life regardless of what others expect. Maybe even especially because of what others expect (call it my rebellious streak).

I love my body. It’s not an infallible love yet, but it’s growing and it’s not contingent on anyone else. Perhaps most importantly, though, I’ve learned that I’m worthy, not in spite of my chair or of my body, but including them.

The whole of me is worthy.



About Author

Kayla is Senior Editor at Disability in Kidlit and a graduate of the Clarion Writers’ Workshop. Her work has appeared at The Toast, The Establishment, Uncanny Magazine, and in the upcoming anthology Feminism for the Real World. She is represented by Beth Phelan of The Bent Agency. When not buying way too many books, she’s usually being overly sincere on the internet.

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10 Comments

  1. Kayla.. What you wrote was strong and powerful. Thank you for being so open and sharing that. It really took my breath away. I didn’t I was just a girl with self esteem issues and your words even spoke to me and I don’t have a disability. Thank you Kayla.

    I also wanted to say as a parent of a child who is blind this project is really interesting and exciting for me.

  2. Thank you, Kayla, for sharing this. I know it mustn’t have been easy to write something so personal, but it needed to be said. As long as idiots like those two college boys continue to devalue people with disabilities, it’s important girls and women hear the message that no matter what their body looks like or is capable of physically, they are not worthless. You are so incredibly strong.

  3. Thanks for fighting through the blushes to say what needs saying. I also use a power wheelchair, and I wonder if strangers would be quite so eager to pat my head if they had any clue what perverted thoughts were in there.

  4. I’m abled, but I have a great many friends who aren’t. When I wrote Tin Cat, a sci fi with a disabled person, who had sex, I asked them to read it over because there were two things I wanted to achieve – to write a heroine who wasn’t defined by her disability, and to show that being in a wheelchair doesn’t turn one into a thing.

    Sadly it’s not YA. Reading this post, I almost wish it was (it’s a little too adult to recommend, really)

  5. Dahlia Adler on

    God, I love your interviews. They give me so much to think about, and they inspire me like hell to write. Thank you so much for sharing so candidly, and I can’t wait to read your eventual “I found someone awesome” post.

  6. Thank you for sharing. I know it must have been really hard to write this article as I was reading it, I couldn’t help but think “Wow I don’t even think I would have the guts to write on this topic”.

  7. Pingback: Rhetoric on My Mind | Tracing: Disability – Round #2/#3

  8. WONDERFUL Blog! I’m happy I found it! I take care of my Fiance who has SMA II, and I just started a blog about our life together, living with SMA and how I deal with it. Please check it out if you get a chance! I’ve gone from a punk rock musician, to a live-in, full-time caretaker, and I blog about what it’s like. Hope to have you come check it out! Have a great day!
    http://remotecontrolgf.wordpress.com

  9. wow, this punched me right in the heart. I have a form of muscular dystrophy and I have wrestled with these feelings of worthlessness as well, but like you I’ve also grown over the years into valuing myself (it’s an in-progress process of course!) – reading this was like reading something I myself could have written, and I felt pain right along with you as I read these moments from your past with those jerks. and that’s what they are, jerks. there are people in the world who will (and I’m sure, do) see you for who you are and not your circumstances. I’ve met some myself and I hope you meet plenty who do, as well!

    as for those jerks of your past, I hope they come across this post sometime and realize the error of their ways and treat people in their lives with much more respect! if I had a time machine I’d go into the past and just hug you.

    to Misa: this line of your response “there were two things I wanted to achieve – to write a heroine who wasn’t defined by her disability, and to show that being in a wheelchair doesn’t turn one into a thing” is amazing. very well put 🙂

    p.s.
    chrome keeps wanting to correct “dystrophy” into “astrophysics” and that’s making me laugh. just adding that because it’s funny to me. 😛

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