Disability, Self Esteem, and Sex

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.