Body Image and Disability/ My Diary.

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.)

This isn't me or my dad, I stole this.

This isn’t me or my dad, I stole this.

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.

Kinda like this piece of body prison.

Kinda like this piece of body prison.

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.

jonipainting

Painting Mary?….with watercolours.

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.

#DisabilityPrivilege

For all my bitching about disability struggles, I could stand to blog a bit about disability privilege. No, I’m not talking about getting the parking spot closest to the mall door, or front row seats at movies(though those are definite situational perks), I mean the different ways in which different physical disabilities dictate how we are seen by others. Here, I’ve arranged these in a chart, because, easy:

Societal Hierarchy Of Disability

 disabilityhierarchy

Before everybody goes ape snatch over my essentialist pyramid, allow me to make a cluster of disclaimers. Firstly, I made this up, just now…like everything I post here, unless otherwise sourced. Secondly, I am acutely aware of the troubling affects of generalizations, and issues around defining words like “slight,”I use this for definitive purposes only. Thirdly, acquired disability (caused usually by injury or accident, not from birth), can be worse physically than many Forever Disabilities (I term I came up with, to describe disabilities had since birth, that are never ever ever going away) but I think societal approaches to acquired disability are a little less condescending, which I’ll discuss. Quatro: This post will only address social views of disabilities, and how certain attitudinal changes happen with different disabilities. It is NOT (Never! Not at all!) a reflection of the disabilities themselves or the people that live with them. This pyramid is to meant to raise questions, bring about brain synapses, and maybe start mouths flapping. Let’s talk about it.

Claiming Personal Privilege

Of course, my vantage point as a person in the second -to-bottom category brings about an inescapable personal bias—and that’s also where a lot of my privilege comes in. So let me disclose quickly, in the interest of fully “claiming” privilege. I’m a white girl, who lives in Canada, and doesn’t need to have her parents help her with personal care. I’m mildly conventionally attractive (Thin? Nice teeth? Apparently I’m also conceited.), and I have full verbal capacities. I’m also educated and have part time employment at my disposal. I’m pretty damn privileged.

CP Privilege,

Since Cerebral Palsy is my story, I’ll use it as a starting point. Ever since undergrad, my friend Andrew and I have titled our type CP the “jackpot” of disabilities. It’s not, actually, we were ignorant fools in undergrad (ok well, at least I was). But there are a few positives to this disability as I experience it:

  • Some of the symptoms of CP, such as rigidity and muscle spasms, can be improved through therapy. If therapy is maintained (hah. No.) then your ability level can increase a fair amount, relative to how you define fair and the severity of your CP. It’s like Choose Your Own Adventure for disabled fitness.
  • People often think you’re paralyzed. Again, limited to my type of CP, which is experienced mainly in my legs, but not actually, it just takes a while longer to notice the other weird spasms happening everywhere. Keep in mind that I have “full” mental capabilities and am markedly free of speech-impediment. As such, I often “pass” as someone who used to be able, but no longer is. This is great while it lasts, as most people don’t question your intelligence when they think you once walked. Which brings me to…

Acquired Disability Privilege

I can only tell you what I know from being mistaken as paraplegic. A few years ago a coworker of mine approached me, saying he had a personal question. He sat down, slouched comfortably in front of me and said, “You take really good care of yourself and you seem to like it here. You’re always pleasant, but I…” He trailed off.

Anticipating his question I said, “You won’t offend me, just ask.” (OOPS, YOU’RE IN MY BLOG.) He laughed nervously and then said, “You’re accident must’ve been hard to deal with.”

I smiled and explained that I wasn’t paralyzed, but that depriving my brain of oxygen at birth was probably pretty rough. I told him I was born too early, that my brain had taken the bulk of it, and that brain damage was the result. In the milliseconds that followed, I watched him go from confused, to understanding, back to confused, to generally awkward. He shifted in his seat and said the ever-famous, “But you’re sharp…and good at your job.” When people say this, I have half-a-mind to punch them, but they mean no harm, and some people that have CP are affected intellectually, so a simple, “my intellect is intact” is usually all they get.

Point is, in finding out I didn’t used to walk, this guy started doubting my intellect, and my capabilities. It no longer made sense to him that I could excel without having been a walkie. And in a way, that’s acquired disability privilege.

Severe, Purely Physical Forever Disability Privilege

Say what? I see this newly-made-up category as those people that have severe physical disabilities, from birth to beyond. Generally, when society finishes treating them as a tragedy (as is sometimes incurred with many and most physical disabilities), they can then move on to doing whatever they do, without questions about intelligence, because their disability is purely physical.

I’m stopping there, because I don’t fit this category, and writing as if I know a damned thing is causing me to break into a nervous sweat. I do not want to minimize other barriers that those failing into this category may face, only to mention that when your disability is “purely physical” (as mine is not) I should hope that people don’t constantly question your noodle’s capacity. Noodle.

And here lies the end of this likely offensive post. If you take nothing else away from this, I hope to stir your mental cauldron on how different disabilities are received and perceived. Thoughts welcome.

Beauty for All Doesn’t Quite Work

This morning I woke up to read a  blog on disability and beauty (dead cool). I read the article with one eye open–not because it was 5am and sleep continuously runs away from me lately–but because the discussion around disability and attractiveness always ends in a gigantic unanswered question mark. With my heart in my throat, I read one stranger’s account on the issues surrounding the topic.

This eloquent author argues that disabled people are often seen as beautiful because of or despite their disabilities. She discusses the issue of constant patronization that is so often attached to the “you’re so beautiful, I don’t even see your chair.” She briefly addresses how, for many disabled people, it is hard to accept a compliment, without wondering if the motive fuelling the nicety is based on some stereotypical, ignorant notion about disabled ppl and what they need to hear. What I liked about the post (which by the way, is worth a glance. Fuck, if you’re reading this instead of that, don’t. Read that.) is that it doesn’t offer answers, really. It sounds to me as though the writer knows better than to answer this infinite question. She simply frames the issue in a way that makes us ponder a bit, which I have a thorough appreciation for.

In case any of you Facebook loopies are still reading this, the issue with defining disability and beauty is that they, in their fundamental states, do not agree. Hold back your cringes, and let me use a stupid metaphor and then try to redeem myself.  By fundamental states, I mean, their core ideas, in many respects, conflict. Recall Grade 9 science. Think about that lesson on the laws of attraction and positive and negative ions. (that was the same lesson, yeah? :(). Pretend that beauty is a wonderful positive ion, and that Stephen Hawking deemed disability to also be a positive ion. (no one argues with him, he’s disabled. And a genius.). The beauty ion and the Stephen Hawking ion are repulsed be each other, because  science tells me that two positives hate each other.

Back in reality, the reason for the incompatibility of these two constructs is because beauty is based on hierarchy and disability, at its current time/movement, focuses on demolishing hierarchies that support barriers to people with disabilities. Beauty says, “You must meet these standards in order to be valued by friends, men, your mother” Disability rights say, “It’s okay that your ankles crush themselves when you stand, here’s a candy.” Beauty is a standard, while disability (and its associated movement)is a transformative search for finding equality in having no or minimal standards. They are complete opposites, even though that destroys my shitty ion metaphor from the last paragraph. Oh well. Hope you caught the truth in that jumble of confusion.

Looking at how this interacts with social realities, I’ll look at my own life (because what else is there?).   I’m pretty disabled, by my own description. And I don’t mean disabled and pretty, i mean my disability is in the severe section of the mild-severe type of of lil premie babies who just couldnt figure out breathing after birth.

So here’s me, kickin it with brain damage and a big ass wheelchair, minding my own business. And like every girl that’s graced this earth, my business isn’t minded for long because a small segment of men like to be very vocal about their attractions. For most girls, this means getting cat-called, maybe a “how you doin?” on a summer’s day.  Sometimes it’s appreciated, sometimes it isn’t wanted. But that’s a different post.

For me, getting hit on by strangers almost always sounds like, “You sure are purttyyy for someone in your ‘situation'” (my ‘situation’ is my wheelchair. Other situations include being black, gay, brown, a cat. right? I feel so bad for Jamie Foxx and his ‘situation’). With time, people have gotten better at refraining from this obnoxious behavior some, but when I first entered my 20s, it happened all too often. This is because this stream of ignorance acknowledges the ingrained belief in the disconnect between disability and beauty. Acknowledging the clash between disability and beauty that is prevalent can make a wheelie go nuts. The question soon becomes, do I “pass as able enough, for the sake of being sexually attractive,” or “Give up trying to be attractive in order to embrace/reveal disability?”There is the option of doing that which I’m inclined to, which is to be both, despite their inherent contradictions, but then there’s the issue of the novelty effect, and constantly wondering if people are seeing aspects of my beauty in terms of me or “for a person who uses a wheelchair.”

Last example I’ll bother you with is a personal one which, for me, defines just how deep the contradiction between beauty and disability runs. Until I was 19, I had a really crooked spine, which can be a common issue for ppl with CP. Unless you are John McCrea and you were born with a spine of steel. Anyways, before I was able to get surgery, my spine was all wrong for 5 years. This wrecked teenaged-me in a lot of ways. I really felt like I went to bed a potentially beautiful 14-yr-old and woke up looking like God put my torso on wrong. It all happened very fast, and within a blink, my nice stomach was now a protrusion. My sides were uneven. My body just didn’t look like I thought it was meant to, and I absolutely hated it. I couldn’t be a disabled girl who passed enough to be accepted as pretty anymore, my pretty was gone. I was just disabled.

Thank god time passed and I went away to school and met some people who helped me with self-acceptance. And I eventually got surgery. Who knows where I’d be if surgery wasn’t possible and I’d had to accept myself fully.

All of this riggamoroll leads me to this point: Beauty and disability shouldn’t contradict. But they do. All we can do is be above it.