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.

How The Disability Blame-Game Works

Having a distinctive trait that separates you from “normal” can easily become a go-to excuse for all of life’s problems. When that trait is living with a disability, it can soon mean that nearly everything is fair game to be blamed on physical impairment. Much of this blame may be legitimate, like “Oh, I can’t go to your house because you have stairs, no strong people to carry me, and you’re just another jerk who won’t build a ramp.” Or, “Oh, no, little child who wants to play in my wheelchair, you can’t because I actually can’t get up”

These physical/spacial barriers in life (stairs, small spaces, hilly places, inaccessible bathrooms, secret coves) are the easiest to pin-down as #disability problems, but from there on in things get a little messy. As a wheelie, I have time-and-time again asked myself “Is this me, or my disability?” usually pertaining to issues of employment, schooling, friendships, sexships, everything ever. It’s a burning question, and is always sitting comfortably in the back of my mind.Here’s a breakdown of ways disability can bare the brunt of blame for issues other than physical blockades. Keep in mind that this blog is based mainly on my experience and the experiences of other disabled people who have been kind enough to share their thoughts with me.

Jobs/ Job Problems:

Negative internalizations about disability are a real bitch. In the realm of employment, if you get a job, you often wonder if you only got it because the company had to fill their disability quota. If you don’t get the job, you might wonder if it’s because the company didn’t want to take-on whatever accommodations you may require–be it more office space or general awareness of your disability issues.

Either way, if you’re accepted or rejected in the employment world, it’s almost impossible to figure out what’s your fault as a person and what’s an unchangeable result stemming from your disabled status.

Another thing encountered in the work environment is genuine surprise when you complete a task well. This is not meant to bash anyone, but sometimes I think people are unwittingly baffled when disabled people are actually being useful, as it doesn’t fit with engrained stereotypes, and our perma-spot as the “needy wheelie”. When this happens, it causes the PwD to question themselves in a “Did they expect me to fail?” way. It also plants doubt about whether compliments are genuine, like, “Did I do good by human standards, or wheelie ones?”(which are inevitably lower, since your life is harder—we expect less of you, don’t worry).

If you take disability out of the equation, it’s a little bit easier to breath. When you get rejected, it’s because you weren’t qualified, or your bedside manner sucks, or you blew the interview, like the fool that you are. All of these reasons are manageable things that can be improved upon/changed. Disability not so much.

Relationships:

I feel bad about addressing this, because I write about it often, and also because I suspect I’d be nearly as awful at friendships and relationships if I were able-bodied. The questions around social relations with others revolve (again) around not knowing whether your excluded because of your disability or your personality. I only went to one high-school party in my entire 4 years, and the whole time I was beyond baffled that I had even been invited. Sometime during my high-school period, I had 2 child-like high-school “relationships”, who I thought of as: “people who liked to look at me, laugh at my jokes, and make me terribly squeamish by holding my hand”.  Clearly, thriving in the social world was not my thing, and while I was well-liked, I was never really accepted.

It remains a mystery how much disability has contributed to my social troubles. My inability to achieve peer acceptance could be two parts Kristen’s really fucking intense and one part I’m disabled, how does socializing happen? In truth, I just don’t know what’s what, and it’s really tough to know when I need to take on the task of self improvement.

I originally wrote more, but this post is becoming overly self indulgent, so its ending here. Knowing the lines to draw regarding what is and isn’t a result of being disabled would help me individually, as well as helping other PwD to acknowledge and understand the roots of some of their struggles better.

…And for this reason, they should have shrinks who dedicate themselves entirely to clients living the wheelie life. I’d pay big bucks to be a part of that.

Figuring Independence When You’re Dependent

“There is no fixed reality, only objects in contrast.”—17, The Flamethrowers

I’m writing this because if I don’t, no one will understand. I’m writing this because my dad is passed out on the couch, his eye lids doing that fluttery thing that can only mean REM sleep—which means transportation to bed is currently on hold until further notice.

As of lately, I have been asked multiple times how being disabled has affected my life.   People have creative ways of phrasing it, someone who I’d just met  asked, “You have CP[…] Does that make life hard?:(“ I was in a detached mood and replied, “Does having blue eyes make life hard? It just is.”

But the truth is, disability is an ongoing journey to acceptance. A major factor contributing to the push-pull relationship I have with acceptance is the intermittent courtship I’ve got going with independence.

The factor that spurred all this blabbity hoopla is my relocation back home for the holidays. In terms of change in lack of independence, here’s what that means for me(try and put yourself in my shoes if you’re feeling extra empathetic today):

–       waking up when dear old dad wakes

–       showering if dear papa is on schedule/awake enough/ I’m starting to smell.

–       Waiting, in a rolly office chair, for  my ever-older father to feel strong and lift me down two flights of stairs to my wheelchair. The stairs  are steep, and manage to invoke  prayers I didn’t know I still had in me.

–       Waiting to pee/not peeing by myself, because my kid-size wheelchair is too big to fit in either of  the two bathrooms

–       Nakedness in front of my parents. Not that this matters, except that on some level my dignity feels it.

–       Complete trust, in everyone for everything I need help with, always (because, what choice is there?).

Make no mistake, this is not a rip on my family or their way of helping me. They try really hard at times, and to bitch about them would just be disrespectful—not to mention biting the hand that fed me for many years. The issues I have around my dance with independence are mine alone, and have little to do with my parents attitudes toward me.

That said, I do believe that  dependence on others, and some of the extensions of those needs—like being naked in front of my dad at 26—does have a direct  effect on the development of who I am. Think about it. If you’re unable to get yourself dressed,  and have never had that ability…what does that do to how you see yourself in relation to others/the world/your self worth?

Earlier this week, my kid sister, tired of Barbies and Frosty the Snowman, changed her dress three times in one day—from  sparkly silver winter dress, to Christmas coloured checkered dress, to Easter dress.  By the time she had the third dress on, I  asked her if she knew we’re still doing Christmas. She giggled, shrugged and stuck her thumb in her mouth..

I’m not just writing about the dress-switch because my little step sister is cuter than 5 puppies with squishy faces, but also because I think her changing dresses are an assertion of self.  Yeah, you’re right, it’s probably also because she can’t decide what pretty princess she wants to emulate most, but is this not part of the process of self-identification? What happens when the assertion to commit to and complete that clothes swap is lacking, and heaven forbid, you’re stuck in the same puffy doll dress all day?

As an end to this poorly articulated rant,  here’s an example of how this lack of I can effected me. In my preteen years I went through a phase of forceful grasping at ability straws. Locking myself in the bathroom, I would try for hours to figure out some way that I had somehow overlooked all this time, to get myself dressed.

“If I can’t do this, how can I ever be an adult?” I thought over and over, promising myself that I would stay in the bathroom until I worked something out. The last time I tried, I was in there for going on four hours, with no success, and a mother who insisted I come out for dinner. I felt so confused. I thought it was  a race against myself and time—I had to learn how to dress before  adulthood hit.  I cried a lot the last time…because I just knew that that time would be no different than the last few, and I was afraid of what that meant for my future.

Needless to say, I never did learn to dress myself, and thanks to societal accommodations/taxpayers money and adjustments in who is deserving of help, I do not live my life as a nudist. On a practical level, this is positively awesome for me…I’d be dead in a ditch somewhere without living assistance. But  I cannot say the same for how I see myself. When you fail at doing things that  everyone else does with ease, and you never talk about it, but are just expected to chill out and let your dad help you/sleep in your clothes/ stop needing so much, it catches up with you. And it’s a sneaky bastard.

Here’s the double edge sword: We [physically disabled people….] have to be grateful for the help we have. We need to recognize that were this a different time, we would be in an institution somewhere in the belly of the Earth, treated as though we were mentally incapable. We need to be glad about where we’re at. We have to be (on differing levels) at the mercy of others, their schedules/willingness to help/ and ways of helping. We move when they move. But how then, do we create a space where assertion is still needed and valued if not obtained physically. How do we say, “It’s true that others will have to help you to achieve your basic needs, but your voice/self worth is still valued, despite being entrenched in the availability of others”? Someone should blog about disabled boundaries so I can learn a thing or 10.

Night lovely people.

Textbook Disability

As a reward for reading about things my heart only half-cares about, I bribed myself with the incentive of reading my textbook’s chapter on disability only after I had finished the social agency and poverty chapters. Disability chapter was like my brownie cake dessert after my brussell sprouts of poverty and social agency had disappeared.

Anyway, here I am all amped up and ready to indulge my narcissism and read about myself, when my heart fell out my butt. The Disability chapter of my text, thoughtfully named “Persons with Disabilities: Barriers to Their Full Participation in Society,” was divided into two parts: Actual (physical) barriers, and Disabled (psychological) issues. In my experience reading general info on PwD, the disabled psychological issues usually blabs on about learned helplessness and overprotective parents and waking up on a tear-stained pillow (depression and its comorbidity with physical impairments), but this chaptImageer, in all its 13 pages took things a step further. It had the gull to talk about the results of internalization of disability, and pretty specifically, too. The nerve.

My first instinct when reading things that fly too close to home is to drop everything and go look at pictures of unhappy cats, but in the interest of better understanding my own life, the cats went on the back burner. What I found instead was this gem of sadness, cut straight from a disabled person’s heart:

For many [PwD], these [negative] feelings and self-evaluations can become barriers that impede them from achieving the maximum of which they are capable.[…] Examples of personal barriers are a sense of poor self esteem resulting in low self esteem, fear of rejection and/or retaliation by authority figures and non disabled people in general.

In not so many words, the textbook is notifying all social-workers-to-be that there’s a high chance disabled clients will spontaneously cry in their office. It’s also explaining the emotional root for some of the issues associated with disability. Low self-esteem from low-body image and self concept results in a self-made barrier.

The textbook seems to take a go-all-out approach to discussing emotional issues common to disability, as it also says,

If steps are not taken to rectify inequality, the disabled memebers [ha. I’ll show you my disabled member] may feel their disability makes them less disirable, less valued, and less productive than others without disability. Unless they recieve support from others about their worth, they are likely to develop feelings of low self-esteem and powerlessness. Out of such issues emerge feelings of bitterness, resentment, self-pity and fear of isolation and isolation.

I kind of wish the text had closed their tragic statements with, “Good luck with that,” and stopped there. But it goes on to discuss how these negative feelings often interplay with over protective parents/siblings (Brent and Kyle <3), and how that turns into a generally bad situation quicker than you can say lifesabitchthanyoudie.

Having the reasons for the deep unrelenting blackness of my core laid out in text form is gravely grave, and a bit annoying. Thing is, I don’t feel like my self-esteem has always been in the negatives, nor do I feel like it will stay there. In fact, I can remember being 21 and being arrogant in many respects. Then a bunch of stuff happened and I forgot myself for a bit. And now I’m here, writing things about things. I don’t know whether to be delight or torn up that the belly of my emotional turmoil has been summed up in two short quotes. Fuck you textbook, you dont know me, you dont know my life. My parents are DIVORCED.

What about you guys? Wheelie or not, do you feel like there is one catastrophic, life-altering event that can bare the brunt of your sadness? If you are a person with a disability, does this make you cringe?Maybe it gives us an excuse to live at the LCBO. Or maybe it’s real.