Most times, when we read or discuss body changes, it’s around puberty, pregnancy, menopause, or aging, and it has an “it’s all downhill from here” feel to it. What we don’t see are articles on disability and changing bodies. Somehow, it all gets lumped under “aging” even though the circumstances of bodily growth with a disability can be vastly different than your average ablebodied Joe’s. Let’s talk about the way people situate themselves in relation to their body changes, when disability is a factor. And by ‘let’s talk about,’ I mean I’ll clobber you with personal examples..
Everyone creates a story about their body—how it looks, what it does, whether or not it is of use to them. Body image is extremely underrated as an impacting factor of self-esteem, self understanding and growth for people with disabilities. My body narrative has always relied heavily on my petite body type—small enough to carry, small enough to meet standards of socially acceptable thinness, small enough to fit in my dad’s hand as a baby, but just big enough to keep on living. (This isn’t a brag; in fact, the “You fit in the palm of your daddy’s hand,” story that my family tells, seems to solidify my spot as Miracle Child.)
Being tiny was great for everyone, especially me. At my 7th birthday party, we played Piggy-Back: a fun game where I took turns riding on backs of other 7-year-olds, as they ran up and down the hallway of our apartment (it ended in a concussion, still worth it). Later on, If I decided to do something crazy, like walking, or climbing (falling) off of a chair, or crawling up a flight of stairs, everyone would just let it happen, because I was small enough to rescue. Inevitably, someone would end up yelling “Come get Kristen.” to which either of my parents would magically appear and scoop me up.
At 13, I loved sun-tanning and looking at my own abs. I really thought I was hot shit, in my tankini and tear-away Addidas pants, with a mouth full of purple and blue braces. I could bask in the rays for hours, thinking about life, and whether or not I was really as pretty as I thought I was.
At 14, I grew (small) boobs and a (small) butt and everything went to shit, seemingly overnight. My body started to hurt, it became heavier, and more work for me to drag around. I felt like I was moving in slow motion, like gravity was impenetrable resistance. My spine became crooked from my natural weight gain, and the pain was pretty constant. My stomach jutted out because of my spine issue, and I soon looked pudgy. I didn’t feel like a silly, vain little girl anymore, I felt I was in a body that wasn’t supposed to be for me.
Within 6 months, I had a huge torso brace. I was slightly relieved, it held my body in place, so every move no longer felt like I was making my back curve worse. It also resembled a corset, except plastic, so my stomach was confined and I looked somewhat skinny again. On the other hand, the brace also caused a lot of skin sores and I was in a lot of pain whenever I took it off. I started measuring my thinness by how many fingers I could fit in-between the space where the brace closed. Half a finger was fantastic, I told myself that if ever I didn’t need the brace anymore, I could reward myself by wearing Britney Spears’-style shirts, baring it all because I’d earned it.
I don’t have enough discipline to develop an eating disorder, but I guess I played with fire. When I turned 16, I hated everything about my body. I would go as long as possible on fruit or half a sandwich. It felt good, I felt I was doing what I could to minimize my pain and the finger-gap where my brace closed.
Somewhere in this span of time I read an autobiographical book about the only other disabled person I knew about at the time: Joni Erickson Tada. Tada is a super-Christian, who became a severe quadriplegic at 17, after a diving accident. I don’t remember much about her book now, except that living in a Stryker frame for 6 months (maybe more?) sounded like absolute hell (I bawled and re-read that part many times, trying to figure out how anyone managed not to die from depression during that phase of recovery). I also remember that boys treated her like garbage (her first love ditched her soon after her neck broke), and that she loved Jesus. She loved Jesus a fuck ton. And now she has her own ministry, and paints really nice things, using only her mouth.
In my desperation, I wrote a letter to Joni Erickson Tada, or more specifically, her big fat inspirational ministry. I wrote her the most personal, sad-sack letter, which went on for pages, but can easily be summed up as: “Dear Mrs. Tada, please help me. I hate myself and my back hurts a ton and I cry a lot in secret. Also, God hates me.” In fact, if I remember right, it was five front-to-back pages of handwritten self-pity and begging for answers. I cried a lo t while writing it, I still remember my fucking tear blots on the pages, which I’m sure I left there for dramatic effect.
Oddly enough, I also won the Optimism Award during this time, for being disabled and existing still. What a confusing time.
Anyways, weeks later one of Joni’s minions replied to my letter. They told me to “Lean not on my own understanding” and spent the rest of the reply expanding on Proverbs 3:5, as if I’d never read a fucking Bible in my life (which, if they’d even read my letter, they would see that I definitely had, and that it was causing me grief). I realized that no one gave a flying shit about my heart-felt letter, and that my last straw– the only disabled person I’d known about– didn’t have time to care.
Fast forward two (three?) years, after my digestive system started failing, and I eventually had surgery to straighten my spine. This meant much less pain (after intense recovery), and that I went back to being small. I have two memories after waking up from nine hours of anesthesia: One is my dad saying “Hey Kiddo,” and grabbing my shoulder as if to say, ‘glad you made it out alive,’ and the other is feeling my stomach, to make sure it was flat for real.
Achieving my ideal meant I could go back to being vain and focusing way too much on how I looked. It also meant I could eventually start eating like a human being again, and work with my body to be as able as possible. It was really fucking great, when it all turned out.
My wish from this self-concerned diary-like entry is that we talk about these body issues more readily. Those 5 years that I wore plastic were torture for me. I couldn’t think about much outside of my physical circumstance and my pain. I didn’t see a future for myself, I tried to eat as little as possible, and I didn’t know how to talk about it beyond crying and over-analyzing. I felt very much alone, scared, and insignificant.
Truly, I want there to be more (or any) ways for people with disabilities to discuss their body differences, and how they cope (or don’t cope) with them. Here’s a list of things I want to do/wish existed:
- Reframing: As in, someone had suggested a different way for me to see myself, other than “disabled but somehow still small/pretty enough.”
- Suggesting support for coping mechanisms for pain and discomfort, and the way we think about that.(I know there are specific support groups, for certain degenerative disabilities such as MD, and I have so much appreciation for that.) But It makes me super sad to think that some wheelie somewhere is mistreating their body because they can’t talk about it.
- Safe spaces, that include others with disabilities, where discussion is encouraged. The amount of disabled people that commit suicide is heartbreaking (American link, but interesting to note). The issues are complex, but being able to relate to another on the basis of physical circumstance, makes things that much easier.
- Fucking life-panning: I just recently heard about a program that helps disabled people (mostly people with developmental delays), gain essential life skills, like riding the bus, writing cheques, and cooking. Two of my best friends went to these gigs, and I envy them. I didn’t learn to bus alone til I was 21. Oops. I think that some of this life-planning stuff should be mingled with self-esteem/body image stuff, in that it’s all somewhat related to quality of life and general “success”.
- Disability-Centred Grief Counseling : Your body changes differently than others. Shouldn’t counseling be adjusted to reflect that difference?
Wheelie solidarity is important, especially around issues like bodily change. Thoughts are welcome, if you’ve actually read this far.