DiversifYA: Kayla Whaley
|June 4, 2013||Posted by Marieke under Disability and Illness, DiversifYA|
Known on Twitter as Punkin’ on Wheels, Kayla is an editorial intern for Entangled Publishing and joins us today to talk about what it’s like to grow up with Spinal Muscular Atrophy.
1. How do you identify yourself?
I identify as a person with a disability. I was born with Spinal Muscular Atrophy Type III (SMA), but wasn’t diagnosed until age two. SMA is a form of Muscular Dystrophy, which you might be familiar with because of the Jerry Lewis Telethon. Basically, SMA is a degenerative disease that affects my muscles. Prognoses vary wildly, but assuming nothing changes drastically, my lifespan won’t be affected. One of the more frustrating things about this disease though is that there’s really no telling how quickly my muscles will weaken. For instance, right now I can hold myself sitting up, have full use of my hands and lower arms (though I can’t lift my arms up), no issues breathing or swallowing, etc., but that all could change at some point. No telling if or when.
I was given my first power chair at two when they diagnosed me, because I was a ballin’ toddler and aced their obstacle course. I used it only part-time until I was six when I stopped walking entirely.
The question of how I identify myself is actually one I’ve struggled with a lot. Growing up, it wasn’t something I felt the need to think about. I was that girl in the chair, special ed., handicapped, disabled, etc. Any and all of the labels people gave me, I just shrugged and said, “Yep, that’s me!” I figured they were all technically accurate, so that was good enough. It took me a long time to realize most people weren’t just stating the factual state of things (that I’m in a wheelchair), but that they were also projecting assumptions and judgments onto me with their words. With my implicit consent. Once I realized that, I embraced person-first terminology and I now identify firmly as a person with a disability. If I ever use any other words to describe myself (I still frequently call myself “the girl in the chair”), it’s because I want to, not because I’m letting someone else make that choice for me.
2. What did it feel like growing up with Spinal Muscular Atrophy III?
Complicated, I guess. In a lot of ways, it took me a while to register that I was different, that there was this massive thing that separated me from my peers. I think it’s because I always knew it was a part of me. I’d been using a wheelchair literally longer than I could remember. So when I was very small, it didn’t matter much. The main things I remember actively knowing were different were that I waddled like a penguin when I walked and that I sat down more often than most kids.
Once I stopped walking entirely, when I was six, things started changing. I was old enough to realize I wasn’t “normal” and the other kids realized too. I’m lucky though, because I don’t remember being bullied in elementary school. In fact, I always had a lot of friends. The chair made the friend process harder certainly though. Logistically, I mean. (You’ll find many things I talk about in this interview will be logistical.) For instance, sleeping over at friends’ houses was doable, but difficult. Their parents would have to take me to the bathroom, dress me, put me to bed, etc. As I got older and weighed more than 60 pounds things like sleepovers happened less and less.
As I got older, into middle and high school, I became much more aware of my disability. Largely because other people were so aware of it. I’d get looked at daily, innocently curious gazes from children and pitying, badly hidden stares from their parents. I did get bullied in high school, but I honestly didn’t recognize it as bullying until later. As I passed other kids in the hall, they would dramatically shove their friends against the lockers screaming, “I saved you! She’d have run right over you! You almost died!” This happened nearly daily. It didn’t look like bullying the way I’d seen on TV and in books, so I honestly didn’t think anything of it. It made me uncomfortable, but they weren’t doing anything to me, so I didn’t think it counted.
I also saw how people treated others with disabilities, particularly people with developmental disabilities. I wanted to distance myself as much as possible from anyone else with a disability. For years. Anytime any of the other students with disabilities talked to me in public, I wouldn’t be mean to them, but I would do everything possible to remove myself from the situation. So maybe I’m lying to myself. Maybe I was mean. Maybe I didn’t recognize the bully in myself the way I didn’t recognize bullying happening to me, but at the time it felt like self-preservation. Now when I’m talking to someone else in a chair, I very occasionally feel that same panic rising up in me and I have to actively squash it for the internalized able-ism that it is.
The chair also greatly affected my body image. My body was irreparably different from the norm and therefore wrong. Sure, I thought I was pretty, but I never, never expected anyone else to think so. It didn’t help that people don’t expect a girl in a chair to have any sort of sexuality. For the longest time, I buried that part of me deep. It was one thing to think someone was cute or to talk with my friends about a crush I never expected to go anywhere. It was entirely another to want a sexual relationship with another person and to expect anyone to reciprocate that desire. I’m a much more confident, self-aware, self-accepting person now, but this fear that I’ll never be desirable is also something that still creeps up on me sometimes.
3. What are the biggest challenges? Conversely, what are the quirks/perks?
The single most challenging thing about being in a chair is that I can’t go to the bathroom by myself. I need someone to transfer me on and off with a lift, so I can only go to the bathroom in my own home. I’m constantly keeping track of how much I’m drinking, when I’m drinking, and planning out when I can run home and go. Any excursion that lasts more than around five hours is impossible. It’s SO frustrating.
General accessibility issues are challenging too. You know, stairs, malfunctioning elevators, cobblestone, missing curb cutouts, steep hills, etc. Those kinds of things I just have to deal with as they come.
Now, if we’re being perfectly honest here, another challenge most people probably wouldn’t think of is masturbation. Very logistically challenging for a variety of reasons. I imagine sex with a partner would also be difficult, but I haven’t dealt with that yet. (See, I’m proud of myself that I said, “Yet.” That’s how often I still have to remind myself that it’s okay I’m a sexual human being and to be optimistic about the idea of a future relationship.)
I suppose one of the quirks, not necessarily a challenge nor a benefit, is that I’m never going to be able to live alone. Not ever. I can be alone for periods of time and frequently am, but I can’t live alone. If I’m in bed, someone else absolutely has to be in my apartment because I’m utterly helpless. I can’t even roll myself over if I want to. God forbid there’s a fire. Or I have to pee. (See above.)
There are some pretty sweet perks though:
- The best was easily that the state paid for my undergraduate and graduate degrees. Well, I had scholarships that paid for all of my tuition, but the state paid for my housing and for my care. I’d NEVER have been able to go to school if they hadn’t.
- Extended time on tests (AP, SAT, GRE). I could’ve had extended time on all tests in school but I never actually needed it.
- Free movie tickets in some places.
- Skipping the lines at Disneyworld. Admittedly, this was less a perk for me since I couldn’t ride most of the rides. My sister loved it though. We’d skip the line as a family, I’d get up there and tell the attendant I wasn’t feeling very well, but could my sister still ride, please?
- I always sold the most girl scout cookies, because no one could say no to the adorable little girl in the chair.
4. What do you wish people knew about having Spinal Muscular Atrophy III?
That a physical disability does NOT equal a developmental disability. I can’t tell you how often people speak to me like a child. Actually, no, they speak to me more like a dog. Once I respond they immediately change tactics and speak to me like the adult that I am. (Note: I am BY NO MEANS saying that people with developmental disabilities should be spoken to that way either. No one should.)
That I am fully capable of and fully intending to live the same life as anyone else. I want to follow my passions, to learn, to be happy, to be secure, to be loved. And I will.
That I don’t sit in my room crying about how I can’t walk. That I haven’t been sad that I couldn’t walk since probably middle school. Does it suck sometimes? Sure. Does it mean I have some different challenges than other people? Yep. But it does NOT mean that I’m not completely satisfied with myself, with my body, and with my life.
And I feel like this is particularly important: that they do not get to project anything onto me. I (obviously) love talking about myself and am THRILLED to answer any and all questions about my disability, but you need to ask. Don’t ever assume.
5. What are the biggest cliches/stereotypes you’ve seen?
The saint and the villain. I am not an inspiration just because I choose elevators over stairs 100% of the time, I promise. I also promise that my inability to use stairs does not give me evil genius tendencies.
BONUS: What is your advice for writers writing diverse characters?
Don’t be afraid to talk to people. Now, I will qualify that and say that not every person with a disability is going to want to talk to you about their experiences. But if you know or meet someone with a disability, don’t be afraid to ask them if they’d be comfortable talking to you. I’m speaking only for myself here, but please, for the love of God, don’t ask as though you’re asking me to talk about some shameful, secret thing. It’s neither.
Having said that, if you need somewhere to start, feel free to hit me up! I’ll be more than happy to chat.