#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

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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.

What it’s Like to Have Someone Else Wake You Up Everyday.

When you’re disabled and can’t drag your own ass out of bed, someone else has to do it for you. How this help is received varies by the person and the day. Overall, there are a few circumstances that convey the differing reactions to having someone else crash you’re slumber-party-for-one, everyday:

When you’re well rested. Wake-ups are wonderful when you’re well-rested. It’s pretty much your everyday hangout with a paid friend except it’s the crack of dawn and you’re naked for most of it. If you’re in college, the conversation consists of, “And then he was like______, and then I was like____, but he was like______.” If you’re beyond school, it’s more mutual bitching about work…you know, gossip for grown-ups.

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Oh dear.

When you’re not ready to face the world. Maybe your boyfriend dumped you or you just found out NPH is gay, but for whatever reason you do not want to leave bed, much less see another human.This wake-up usually consists off the attendant greeting you in their friendly-professional manner, before prying the pillow you were smothering yourself with from your fingers.All your troubles dissipate when they fix your hair in a way that makes you look a little more fake-it-til-you-make-it and less Homeless Patty.

When you’re hung-so-over. The knock on the door sounds like bricks are  being hurled at your apartment. Their polite morning tiptoe sounds like the start of a remixed Nine Inch Nails song  And then they turn the light on, just to piss you off, and you can’t utter any complaints for fear of puking. The rest of the wakeup is spent reminding yourself that it’s inappropriate to punch perfectly nice people in the face and that you’re never drinking again.

When you have work to go to. This again? How do I communicate that coffee trumps getting dressed, even if it means drinking coffee naked? 

When you’re in a rush. “Oh, I’ll just wear this pair of mismatched golfing socks, these granny panties and my most uncomfortable bra.” Because you don’t matter, only time does.

And everything seems like it’s in slo-mo, because it’s you vs. attendant vs. time. Also, you’re disabled so time laughs at your attempts to manage it.

When they’re hours early because of a scheduling change. No…no…this isn’t happening, you’re having a nightmare. Oddly, it’s the same thought when they’re six minutes early.

When you’re not alone. Teddy bears don’t count. This refers to the unmatched awkward that is likely to be experienced by the person helping you, and the person in the bed beside you. It’s usually good to be as quiet as possible of the person is sleeping and at least wait til the shower’s running to diffuse the awkward for the helper, if need be.

Of course, every person is different. Some people, and attendants, don’t care. Others feel all kinds of uncomfortable, naturally. Wading through it in hopes of future jokes is generally the only course of action.

When you want to dress slutty. “Umm, I want to wear this one…” you point in a vague, circular direction at the slinky dress/ cropped crop top/ sparkly boob shirt dress thing.

“This one?” the person picks out dress that looks like its previous owner was a mennonite, and you wonder how/why you own it.

“No.”

“Oh, this” Pulls out a baggy looking guy shit, “Op, no. Definitely not that.”

Finally grabs slutwear, and just glances at you, and it, and waits.

“Mm yes please”

All of this dragged out discomfort is overcome by starting the interaction with, “So I feel slutacular today.” or “I need a boob shirt,” a lesson that might be a long time coming.

When you want to stay in bed. “Good morning, how’re you?”

“No”.

I probably missed a slew of them, but these are the ones that are common in my life.

 

 

 

 

 

A mess.

I was gettin my hair done today, because I change my hair everytime I find myself forgetting my priorities–and whenever I’ve worked enough to deserve it–but this time was different than the usual experience.

To be truthful, I dont even really like the hair dresser I go to. She is quite infantilizing ,  and fluffs my hair up til I look like white scary spice, but she is aware of my disability. By “aware”, i mean she is willing to shuffle me from dyeing chair to rinsing chair without fear of lawsuit, which is understandably rare.

So, I contend with all the “sweeties” and “I’ll take care of yous” in the name of making half my hair dark and the other half blond. I wade through an hour and a half of shitty Elle mags in order to be an inch or two closer to the models they bombard me with.  And then I leave, $200 poorer, with a different version of the same frizzy-haired me.

Not so today though. Hairdresser was in the middle of my rinse&tone(heyyyyy), when, in between the spurts of water and conditioning, I heard a voice.

“Well, I’m sure you give that girl in the chair a discount. And she’s a mess.” The voice was unwavering, but there was another girl in the back with me, so I momentarily tried to pretend the comment was about her, and waited for the rinsing scalp message. A few minutes later, the employee that dealt with unwavering voice, came to vent to Hairdresser while she was in the middle of digging her nails into my head. The conversation went like this:

“You know that woman that you called that name this morning?”

Hairdresser: “Oh yes. What about it?”

“She was mad, and said this one’s a mess”

My eyes were closed, and I was trying to bask in this paid-for comfort, but the fact that they were indirectly talking about me, as I lay vulnerably in the hair-rinse position, began to choke me.

“I told you what she is.” Hairdresser replied sternly, “As if she could say anything about this sweet girl.”

My stomach jolted, as neither of these hairdressers realized (or cared) that the water didn’t drown out their not-so-subtle convo.

“Yeah, you were very right” her confidant replied, giggling and returning to the front desk.

Now, before yous go off with what you would’ve done, had you been the one gettin your hair did, chilllll. People are constantly telling me their opinions of how they would’ve reacted had that old person smiled at them like that, or if a guy had asked them that inappropriate question, but they’re missing something: truth.

The truth here is that I am a mess. For all I know, that rude woman saw me enter the place shivering, with my foot falling off its rest, and my hair flying in every direction, as if to scream “help”. She could’ve seen me having the dryer globe overtop my head, trying to position my head in a way that would avoid weird spasms and still allow me to read my Facebook feed. There’s a good chance she saw me contemplating how to walk backwards onto the rinse chair. In all depictions, I’m sure I am a spectacle, and I have trouble being angry with someone who is honest, even if I am hurt.

If I had a disability that somehow allowed me more elegance, or a circumstance which didn’t constantly offer me up as some sort of Exhibition figure, I might’ve interrupted my once-wonderful hair rinse to voice my anger. But my guts for matters like this rely on a sense of completely hypocrisy, lying, or other lunacy to be evoked, none of which were prominent here.

And, of course, I said nothing.

But now I carry it around with me, trying not to frown over it. Heaven forbid truthful but rude statements cause another wrinkle in my forehead and hole in my stomach.

In awesome news, its halloween! use this weekend to be spectacularly slutty. Jesus loves you!

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Seven years of bad luck…

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.