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.

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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.

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#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.

The Way of the Wheelie (Physio Therapy After 18 for People with Physical Disabilities)

There’s many gaps in services everywhere in the Service Industry, but this blog isn’t about everywhere, it’s about wheelies. A glaring gap in services for people with physical disabilities is the way therapy ends abruptly after the individual turns 18. This means that after this kid has spent his or her whole life bucking-up-buttercup and listening to people tell them to “stop fooling around and do your exercises,” They are just set free. Like that, they enter late adolescence, with a high school diploma (maybe), and permission to be lazy for the rest of their days. It’s just so…sudden. In case you’re curious, here’s a chart depicting physio throughout a wheelie’s life:

Age Phase Result
2-10 yrs “Physio is fun. If you have a good attitude about it, we’ll play Barbies/eat icecream/watch Magic School Bus afterwards.” My mom, everyday. Woohoo! Physio is my ticket to fun. I’ll practice sitting up if you throw watching Big Comfy Couch into the mix.
11-15 So, physio is actually a bit pointless. I mean, I try really hard and my butt still sticks out. And I still can’t walk. God, this is dumb. My parents tricked me. Fine, I’m here, but I hate this and I hate you and I’ll be less grumpy about this if it means missing math class. Then I’ll do as many gimpy squats as you like.
16-18 Maybe this means I can actually have abs. Worth a shot, right? Wait, you mean Range of Motion exercises aren’t for abs, they’re to keep me limber? Hmmmmm.
18-forever Woah, I’m free, I never have to pretend i’m riding an imaginary bike ever again. Why am I so out of breath? Why am I so sleepy? How come I feel 45?

I can see how you might think I’m exaggerating in terms of being “cut off” regarding physio after 18–I mean, it seems nonsensical, right? It’s not like i was cured from eating wheaties, or finally figured out how to clone my physio therapist, I simply just grew up.

And for a year or so, laziness was a great freedom I felt I’d earned through enduring years of boring stretches and embarrassing exposures of my physical limitations. I was content to sit, perfectly still, with no physio examining my muscle contractures or asking me to fight through my spasms. I didn’t have to try and “sit up straight” while my asshole therapist pushed me over ever so slightly. There were no floor mats for me to get stuck in mid-log roll. No cold, plastic “therapy balls” for me to fall off of ever-so-uncoordinatedly. It seemed heavenly, until I realized I wanted to make the most of my self while i was still young.

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These therapy balls are part of a balanced family.

 

Getting on-track to my “physical best” was easier said than done. At 21, I didn’t have a family doctor to refer me to a physio, so I went to the campus doctor and they told me that’d i’d have to have some injury or other “fixable in 6 visits” muscle ailment.  It was a dead-end, CP can hardly be improved, never mind fixed in 6 sessions.

Across the hall from the physio therapists who never really help anyone was the gym. Through the glass windows, I saw a pack of buff turds with iPods and tight v-necks and watched them bounce around on the ellipticals, swinging their butts up stairs made of air. I wanted that.

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Soon after that, I found someone who called themselves a personal trainer. I told her about my disability, and she agreed to assess what i could do at the gym, and train me from there. She had slick, spikey grey hair and seemed to have a general desire to help. But for all her want, we just couldn’t find any machines that i could access independently.

jamie-lee-curtis-69278

I never did find a gym or exercise routine (anti-climatic stories are all the rage) that offered me the same healthy challenge as all my physio in my formative years. As of now, I swim when i can, but I hope that I can work out something more concrete in the future, though I’m not sure anything of that nature exists.

Things that Might Soften The Blow:

In a world where wheelies are more than society’s representation of inevitable tragedy and illness, a few solutions might be offered:

1. Adult Physio Groups: In Kristen’s perfect lil wheelie utopia, this looks like a group of 8-10 wheelies interested in physio, with two physio therapist facilitators that lead the group. Group members could create individual and collaborate goals, steps to achieving those goals, and perhaps discuss issues, barriers, and personal struggles with exercises.

Online Accountability Groups. The two major advantages of the internet are anonymity (even if it’s an illusion), and accessibility. This might mean that people have the confidence to express concerns and are given equal chance to participate, even if their physical challenges prevent them from leaving their house.

Suggestions on what else can be done? I love them. Email me.

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#CP Problems

The other day in class, we did this exercise that was meant to make students understand privilege.It was really revealing and touching and all that jazz, but there were about 29 race/gender/socioeconomic questions and one disability-related question. It was then that I realized most walkies wouldn’t be inclined to think about what it actually means to be disabled. Why would they, their bodies work .

So,  in case you’re a walkie who wants the ins and outs of wheelieness beyond “can’t go inside that building,” here ya go. Note that I have spoken exclusively to Cerebral Palsy, because, well, that brain damage confusion is what I understand most. Shout out to my CP ppl who can relate to this stuff.

  1. Not moving your arms while trying to move your feet.
  2. Eating soup. So tough to get noodles and broth in the same bite without spilling it everywhere.
  3. Going to scary movies and having the person you went with look at you the same way after.
  4. Unforseeable slants in the terrain. Not because your beastly wheelchair can’t handle it, but because it  damn well throws your equilibrium for a loop  and makes you full-on spaz out. And then explaining that to some able-bodies or MD or para/quad person. Good luck.
  5. Never knowing where you are in proximity to space, people, and life. Ok, this one only applies to me.
  6. Eating around people that are pretty much comedians. I’ve ended friendships over this. “I’m sorry, the amount of clothes I’ve ruined from laughing with you just isn’t worth it for me.”
  7. Telling people you have CP, which is brain damage, and then enduring, “You seem so smart though.”
  8. Being around technology and liquid simultaneously. I’ve broken up with 3 (four??) Macs and one kobo over this. Don’t worry, I’ve moved on to others #thankssexyAppleNerds.
  9. Giving blood/needles. I’m too small to give blood anyway (hidden brag), but man, surgery prep is a bitch: Poke, spaz. poke poke, spaz spaz. spaz, poke. “Please hold still.” THATS LIKE TELLING A BABY NOT TO CRY.
  10. Sex. Dead starfish. Sorry mom. Ok, this one only applies to me too.
  11. TImagehis: Pillow intercepts otherwise perfect pivot transfer, and throws balance entirely off for reasons you don’t even understand.
  12. Toe curl/spaz thing. This is when your toes curl, which they do even when you talk, so hard that your other toes suffocate/jab the little toes on the inside. The pain then causes you to spaz more and the jabs get deeper, in a cycle until you can somehow force yourself to relax. Totally stupid. Happens at least once a week (to me anyway).
  13. Multitasking. But I’d struggle with that even if I hadn’t had a bunch of little baby strokes.
  14. Laughing like you can’t breath 10 minutes after the joke ends. And not knowing why.
  15. Getting too excited over nothing.
  16. Having people say, “Pardon?” all the time because you jumble all your words together worse than twitter when you’re excited, sad, crying, angry, feeling anything.

CP kids are super good at the robot though.