Monday, December 23, 2013

This Is What Disability Binarism Looks Like

I exist on the grey area of disability, the part where things are neither black nor white.  I am neither wholly visibly disabled, nor wholly invisibly disabled.  I walk on my own, and yet, I use a wheelchair.  More people are with me in the grey area than you think.  Not everything is black and white.  And that is the core of disability binarism - the concept that things are all or nothing - you are either low-functioning or high functioning.  You're either "wheelchair bound" or you can walk.  You're either totally deaf, or you hear fine.  Get the picture?

Disability binarism p*sses me off.

[A white-presenting person with short blonde hair and wearing a loose fitting gray shirt and denim shorts stands to reach a bottle. In front of the person are several shelves of various bottles. Behind is the person's manual wheelchair. White text reads "Alcohol makes miracles happen."]
Which is why I got so angry when I saw this meme on Facebook.  My life, my reality is not a joke.  Living i the grey area is terrifying, more so than you think, precisely because of these attitudes.

This, THIS is why when I get on a bus with my scooter, I sit in it and ride, even though it's less safe, even though my scooter has tipped over on buses before. THIS is why I don't just park my scooter outside a bathroom stall and walk in. THIS is why, when I go out in public, I let people think that I'm a full-time chair user. THIS is why 99% of my college campus had no idea I can walk. Because of attitudes like this. Because of ableism like this.

The most terrifying part of all of this is it could've very well been me.  When I use my chair I stand up to reach things all the time. Not so much recently because of ableist assumptions like these - it's easier to let people believe that I can't stand or walk on my own.  I get tired of being called lazy, or having a bus driver tell me I "tricked" him.  Can I walk? Absolutely and for sheer convenience I plan to keep it that way, even if I like rolling a lot better and it allows me to do more things. But my chair allows me to go places without worrying about my energy levels. I can zip from there to here to there without so much as a second thought and I never realized how much energy I expended walking and calculating how much of that energy I could expend before I HAD. TO. SIT. DOWN until I started using a chair. Able-bodied people just throw out "walking distance" so flippantly, because they don't know what it's like to expend so much energy into just staying upright and putting one foot in front of the other and not falling in the middle of a busy city street.

So no, it's not a freaking miracle. It's a freaking person wanting to get a freaking drink, and if you're a decent person, if you see me standing up and struggling to reach something in a store, you'll ask if I need help and if you can get something for me. If I say "no, I got it", you need to respect that and walk away, but chances are I will be grateful that I don't have to do the complicated dance of motor movements that is parking my chair in a spot that's not blocking anything or annoying other people, turning my chair off, unbuckling my seatbelt, making SURE my chair is off (because I roll around at top speed and crashing into store displays generally makes employees very annoyed with me), standing up (which may or may not involve adjusting pieces of my chair so that I have room to stand up), grabbing what I want and bringing it down without knocking anything else off the shelf, and sitting back down.

Don't delude yourselves into thinking that this kind of ableism doesn't happen or that it's not harmful. It has happened to me.  More than once.  And when it's being perpetuated by people who have the power to determine where your future goes....that's scary.  Wheelchair users are not all the same, and more wheelchair users can walk than you think. Don't make assumptions and don't gawk at me like I'm fricking Jesus when all I want to do is shop like a PERSON.

This could've happened to me.  Who knows?  Maybe somewhere on the Internet it already has.  Maybe I slipped once in public - broke character for just a second and stood up to reach something or walk a few feet.  Maybe somewhere there's an image going around with MY face, MY chair.  And that is something I dearly hope I never see.  But that person in that photo is a human being, and that human being could've been me.  Laughing-fricking-stock of the Internet.

Will you remember that, next time you get the urge to laugh at one of these oh-so-funny memes?  I sure hope so.  Because next time, it might be me.

Thursday, December 19, 2013

To Parents of Children With Cerebral Palsy

Dear parents of children with cerebral palsy:

Your child with CP may not ever walk.

They may not ever talk.

And that's okay.  Because your child will be able to:

  • Communicate in whatever way they can
  • Move around their environment in whatever way is best for them (which may change at times)
  • Learn many things, both inside and outside the classroom
  • Appreciate the smaller victories in life
  • Develop a unique personality and identity, just like any other child
  • Whine, complain and cry, just like any other child
  • Have a mind that thinks, just like anyone else
  • Find friends that enjoy their company, whether disabled or not
  • Love deeply and express that love in some fashion

And if you play your cards right, they might just gain the most important ability of all:  the ability to accept themselves precisely as they are.  But that won't happen unless you, too, accept them.  Cerebral palsy, like it or not, is a part of your child's being, part of their fundamental makeup.  Your child would not be your child without CP.  There is no cure, no procedure, that will neatly strip away the disability from your child - they are intertwined.  Behavior is learned.  Your child will follow your example in this, as in many things.  If you accept and embrace cerebral palsy as part of the rich mosaic that makes your child your child, they will follow suit.  And someday, when they do have insecurities about the way they are, they will know that they can come to you and you will tell them that is okay to be different.  

Your child may not ever find pride in their being, but this is one area where your help makes all the difference.  Please, parents, I am appealing to you now, to help your child overcome shame, overcome discrimination, and instill acceptance and pride.  They will thank you for it someday.  I promise.


An Adult with Cerebral Palsy

Who Used to Be a Child with Cerebral Palsy

Who Thanks Her Parents For Accepting Her Just the Way She Is

Tuesday, December 17, 2013

Am I Fucking Crippled Enough For You Now?

All my life I've been told I'm not crippled enough.  No, you can't have a wheelchair that's paid for by insurance, because you can walk.  No, we won't set you up with vocational rehab before high school like we're supposed to because you're smart and besides, what can voc rehab really do for you anyway?  You need to stand up and teach, because you can, never mind how hard it is, because they won't respect you, you know, if your butt is in a chair.

Well let me tell you something.  I use four different mobility aids, and all of them my parents had to pay for out of pocket, except the one that was paid for by a charity, because I'm not fucking crippled enough for insurance to pay for them.  They say I'm not crippled enough even though I can't walk much beyond my front porch without being terrified that I'll fall on my face, and only a bit past that without collapsing in heap of exhaustion and pain.  They say I’m not crippled enough because it doesn’t matter if I need those things to go to school or get a job someday, because don’t you know, cripples aren’t supposed to leave their houses.  They’re not supposed to live a life.

You know those statistics they always quote; about how expensive it is to raise a kid like me?  Yeah, they’re all true. But that’s not my fault, and it’s not a reason to commit genocide and wipe out an entire group of people before they even exist.  If those statistics tell you anything, it should tell you that we’re failing.  As a society, we are failing to provide those inalienable rights; life, liberty and the pursuit of happiness.  Because those pesky little rights are only for the privileged in this day and age.  Who are you to tell me that I don’t deserve those rights?

I’m not a patient person by nature, and I’m sure it’s made worse by this age of instant gratification in the form of microwaves and iPhones and information just a click away.  I will not – I cannot – wait while some unknown agency decides my fate, decides whether or not I’m worthy, whether or not I deserve the rights and privileges that able-bodied people take for granted.  I need those rights now, not months or years from now.  In an ideal world, I would have had a power wheelchair with power recline and possibly tilt years ago, complete with a button that shrunk it so I could put it in the car, any car, or carry it in my purse when I’m walking only to whip it out when I need it, anywhere, anytime.  But this is not an ideal world.

Is it any wonder I want to live in the Harry Potter universe?  Surely in this fictional, magical world, they’re less cruel to people like me.  Even if they’re not, magic would certainly make things easier.  Doesn’t that tell you something?  That our society is so flawed that I’m begging to live in a fictional universe just so I can live.  I’m alive, but without a wheelchair, without my walker, without my cane, I am not living.  If there is a God, he (or she!) should be ashamed of this world he has created. 

(I don’t, actually, believe in a God, and this is one of the reasons why.  But my atheist musings can be saved for another post.)

Am I fucking crippled enough for you now?  Have I crossed some arbitrary line, separating the true cripples from the fake cripples?  I don’t know what I have to do to prove myself to you.  And I refuse to play your game.  Someday, playing your game may be necessary for my survival, and I will cross that bridge when I come to it.  But for now, I am lucky that I have family who, though they can’t really afford it, will sacrifice and scrounge to get me what I need.   I am declaring that I am crippled enough, and that’s not going by anyone’s standards but my own.  I am a fucking cripple and I am fucking proud.  

Tuesday, December 10, 2013

Why I Am Against Autism Speaks

I was criticized yesterday for wanting an organization I have been heavily involved in for four years to join in on the twitter bomb against Autism Speaks.  I was told that, from an organizational standpoint, it would better to promote something, to be FOR rather than against something.

Well, from an organizational standpoint, there are many organizations that have signed onto the Autistic Self Advocacy Network's Letter to the Sponsors of Autism Speaks, that are publicly against Autism Speaks.  Those organizations include, but are not limited to, huge organizations like TASH, Not Dead Yet, and Little People of America.  Those organizations seem to be doing pretty well for themselves, as is ASAN itself.

Still worried that we should be FOR things, rather than against them?

Get this:

You know what I'm for?

I'm for dignity.

I'm for human rights.

I'm for language that doesn't reduce autistic people to one dimensional caricatures in perpetual suffering.

I'm for celebrating diversity.  I'm for embracing disability as a natural part of the human condition.

I'm for putting disabled people in positions of power, real power.

I'm for equality, not tragedy.

I'm for expressing yourself any way you like, whether that's talking, writing, stimming, or any other way you can think of.

I'm for communication, in any form, being encouraged, not demonized.

I'm for organizations that build us up, not tear us down.

Autism Speaks is for none of those things.  And that is exactly why I am against Autism Speaks.

If you are FOR humanity, you will be AGAINST Autism Speaks.

Join the boycott.  Sign the petition.  Spread the word.