Ironic (Or, How My Entire College Career Just Blew Up In My Face)

In hindsight, I know I should've seen this coming.

From day one, it was clear that the only way I would be welcome in your department was if I shoved all my limitations to the back.  Sat up straight and used my hands and tried to look as normal as possible for your convenience.  My disability would be tolerated so long as you could wax poetic about how much I "overcame".  My strong self-advocate skills would be praised - so long as they weren't directed toward you.  All the little things over the years....they should have been a warning beacon, a signal for me to get out now.

"Can you sit up, please?"

"I know you have motor skill issues, but you're going to have to be more careful."

"If you can't draw, how are you going to teach your students?"

All those words, all those implications, piled up like kindling, weighing on my back until you lit the match.  This whole semester was a teetering tower of Jenga blocks and you removed the block to make it all come tumbling down.

How dare you.  How dare you. How dare you accuse me of lying about my abilities and then try to sweet-talk your way into smoothing it over.  How dare you try to tell me about how words hurt when you're ripping me open with yours.  How dare you have a meeting about my "limitations" without even notifying me, let alone allowing me to attend.  How dare you tell me I'm making excuses.

If self-advocating is now called "belligerent", then hell yeah, I'm belligerent.  I have been burned time and time again, and expecting me to react kindly when you're telling me that my way of accommodating for myself is not valid is like poking a bear repeatedly with a stick and expecting it to not attack.  With a slash of your dagger-tipped words, you ripped open all the wounds that have been etched into my soul like poison tattoos and set them bleeding afresh. 

It's ironic, don't ya think.....on, oh, so many levels.  Because the reason I chose this major was because I didn't want any child to have to go through what I went through.  I thought that a department that taught about us would embrace my unique potential, and accept me for who I am.  But it turns out they teach about us, without us.  You can teach all the theory, all the rhetoric you want, but until you truly accept disabled people for who they are, all their little scars and beauty marks, you will never properly teach teachers how to teach those of us who learn differently.

What are you teaching the future teachers of America?  That disability is all or nothing?  That a disabled person can never be a teacher?  You are not teaching them acceptance - instead, you are teaching them hatred and ignorance.  I fear for their future students - bright eyed and bushy tailed and ready to learn.  But, oops, sorry, only kids who can do things in the typical way are allowed here, are allowed to learn.  My mistake.

You won.  You fucking won.  Because I am walking, limping, gimping away and I do not - do not - have spoons for your shit.  Is this what you want?  To drive people away from your department, one of the most respected education departments in the nation?  Because if you want that, congratulations, you succeeded.  Do you take pride in knowing that you broke me?

You may have won the battle, but you have not won the war.  Because I'm putting this out there, telling my story.  They deserve to know what happened.  They deserve to know what you did to me.  And maybe someday, some brave soul with far more spoons and far more fucks to give than I will take this higher.  Don't you see?  I let you off far easier than I should have.  I could have rang the alarm bells and got every disability advocate within the state of PA armed and ready to fire.  Don't think I didn't think about it.  But I'll get the last laugh, because someday when I'm kicking ass and empowering disabled kids in my own way, all around the world, maybe, just maybe, you'll think twice.  Maybe, just maybe, you'll regret what you did to me.  I hope, for the sake of all of us, that you will.


Note:  This is my post for Blogging Against Disablism Day 2013.  It also serves as an explanation of sorts for why I haven't been blogging as of late.  Hop on over to Diary of A Goldfish and read all the excellent BADD posts which I am sure are much more coherent than mine is.

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That Word Is Not Yours to Use

TW:  Extensive use of the r-slur
 
I had such an able-bodied moment today.  I could not find my remote control for my TV!  And then I found it under my pillow all along!  I am so able-bodied.  Seriously, I'm such an AB.

That homework we had to do last night?  Oh my god, so able-bodied.  I mean, seriously.  Is that professor, like, able-bodied or something?  Only an AB would do something like that.

This school is able-bodied.  They cut all these programs and then decided to spend all this money building a new auditorium.  It's just able-bodied, in my opinion.

What's wrong with being able-bodied?  It has nothing to do with that.  What do you mean, it's hurtful?  It's just a word; lighten up.  I have freedom of speech, I can say it if I want.  You're too sensitive.

Starting to get the picture?

Replace all the instances of "able-bodied" with "retard(ed)" and no one would bat an eyelash.

Today is Spread the Word to End the Word Day.  Its sole purpose to eliminate use of the r-word - "retard".  Why?  Because it's derogatory to people with disabilities.  And not just people with intellectual disabilities - it's offensive to anyone whose disability makes them seem "not right", "not normal", somehow "off".  If you have trouble interacting with people, if you slur and drool and speak slowly, you are instantly marked a retard.

I've never been called a retard.  Not to my face, anyway.  I'm sure people say it and think it behind my back.  I spaz out and can't sit up straight and I talk too loud and I can't tell my left from my right.  I live with a pit of internalized ableism in my stomach; a deep-seated fear of being called retarded.  "Retarded" packs a punch that "stupid", "dumb", or "nonsensical" just doesn't do.

The thing is, unless you're someone who that label has been applied to, that word is not yours to say, not yours to use.  You are appropriating decades, quite possibly centuries of hatred and hurt and abuse hurled at the intellectually disabled and related communities, and distilling it to mean my teacher was mean to me or I forgot to do something or someone did something I don't agree with.  You are taking human suffering and turning it into a joke.  And that's not okay.

Reclamation is different.  If you take a word that has been used to dehumanize you and turn it inside out, it loses some of its potency.  But for you to reclaim it, it has to have been used against you in the first place.  And I'm not talking about your friend calling you a retard when you lose your car keys.  I'm talking about when it's loaded.  When it conveys all the disappointment that you aren't normal and all the expectations that you'll never BE normal.  When it's been used to tell you that you'll never have a family, have a job, be a true part of society.  Unless you've had that word pointed at you like a loaded gun, it will never be yours to reclaim.

So next time you feel the r-word rising to your lips, stop and think about how it makes people feel.  How you would feel if your identity was used to mean unintelligent, irrational, forgetful.  And then you damn well better pick a different word.  Because if you don't stop, you might just hear me one of these days say "That's SOOOOOOO ABLE-BODIED!!!"

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Murder, Not Mercy

Originally published on April 4th, 2012, on the Disability Right Now blog.  Republishing for the National Day of Mourning hosted by the Autistic Self Advocacy Network.

TW:  Murder/Euthanasia 

They’re trying to kill us.

More specifically, they’re trying to kill me.

Please spare me your platitudes about how you’re not trying to kill me, of course not!  “You’re one of the lucky ones.” you tell me.  “We only want to put the severely disabled out of their misery.”  Implicit in this argument is the assumption that I couldn’t possibly be severely disabled, because I have a voice.  I’m actively arguing against you.

But you don’t know me.  You don’t know a thing about me.  I could be a full time powerchair user, I could be fed through a g-tube, I could be using a communication device.  And the truth is, I’m none of those things.  But I could be.  And even if I was?  I’d still be happy.  And I certainly wouldn’t want to be dead.

You say you want to end the lives of those who are suffering.  Well, if that’s true, then you want to kill me.  Am I suffering?  Absolutely.  Not from my CP, but from the pain that plagues me every day.  The pain could go away tomorrow and I wouldn’t miss it.  But I’d still rather be in pain than dead.  And I’d like to make that choice myself, thank you very much.

You say you’d rather die than be like us.  Like me.  And that’s sad, because you have no idea what our lives are really like.  But that’s your choice.  Those people you killed – directly or indirectly – they didn’t have that choice.  Tracy didn’t have a choice.  George didn’t have a choice.  And that’s what you really want, isn’t it?  That’s your definition of “severely disabled” – incapable of expressing their choice the usual way, the right way, the normal way, so you pretend to be a noble hero and make that choice for them.

I can speak.  I can say “Stop!” when someone is trying to hurt me.  But after I’m dead, will you pretend I couldn’t?  Will you exploit the hardships of my life in order to perpetuate the idea that bodies like ours are broken?  Will you even acknowledge that I was happy, and yes, even proud, just the way I was?

You call it mercy.  I call it murder.

On Friday night, I stood in a dimly lit park, surrounded by my friends, my brothers, my sisters in the fight against ableism.  I held a candle up to the sky in memory of all of my disabled brethren who were cruelly snatched, against their will, from this world.  Not because of the natural path of illness or injury, not even because of a tragic accident.  No, these people were not with us because someone willfully, purposely, decided that their lives were not worth living.  Someone actively decided to kill them.  All in the name of “mercy” and a twisted sense of moral obligation.  If their lives were not cut short, who knows?  They might have been at that vigil with us, joining hands and hearts, building a sense of community among disabled people of extraordinarily diverse backgrounds.   But we have no way of knowing – because someone decided they didn’t deserve to live.

As a group, we must rise up.  As a group, we must protest, in any way, shape or form that we can. 

We cannot let these murders go unnoticed.  The time has passed to be nice, and polite, and grateful for the scraps of humanity that society throws in our direction.  We must demand our personhood, and we must demand it now.  Because if we are too afraid to stand for our rights, if we turn our backs on these atrocities because we are terrified that if we speak up, they will kill us too and blame it on our pitiful suffering, this will keep happening.  It already has.

They’re trying to kill us.

They’re trying to kill me.

And I’m scared.

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Dignity of Loss

Something that's talked about a lot in disability circles and special education circles is something called dignity of risk.  Basically, what that means is that we ALL must be allowed to make our own choices - good OR bad, within safety limits of course.  For example, let's suppose that a child with a disability has a full time, 1 to 1 aide in school.  One day, the child decides to go to the cafeteria to talk to his friends instead of going to class.  The child wants to cut class - should the aide let him?

The correct answer is yes.  The child needs to learn that there are good and bad decisions, and that our decisions have consequences.  Any other child would have learned the same lesson - they would have been reprimanded, given detention, suspended, what have you.  The punishment for a disabled child should be no different.  THAT'S dignity of risk.

A similar thought occurred to me today.  I watched in horror as a video of a high school basketball player passing the ball to an intellectually disabled player ON THE OPPOSING TEAM went explosively viral, complete with the requisite "warm your heart" and "inspirational" comments.  No one seemed to see anything wrong with it - except almost every disabled person I talked to.

I'm sure that player had good intentions.  I'm sure he had GREAT intentions.  He wanted to help someone score.  But that's not how the game works, and to completely abandon the structure of the game just so a disabled player can have a chance to score smacks of ableism.  It's condescending and asinine.  It sends the message that the disabled player isn't a real player, worthy of competition.  It says he's not worth seriously playing with.  It says he deserves "special" treatment, separate and distinct from the other players on the team.  If that athlete had passed the ball to a nondisabled member of the other team, he would have been a laughingstock.  Why is it different when the receiver is disabled?



You know what that boy could've done, if he wanted to help?  He could've treated the boy on the other just like any other opposing athlete - someone to be taken seriously, just like every other athlete on the opposing team.  He could've even taken it a step further and offered to teach the boy some basketball techniques after the game.  That would've demonstrated a quiet acceptance and respect.  It wouldn't have been blaring from the headlines - and it shouldn't be.  Acceptance - REAL acceptance, not tolerance - should not be noisy.  It should happen naturally and without fanfare.

Kids with disabilities need to learn, as well, that sometimes they will lose.  And there will be things they will not be able to do because of their disabilities.  I will never be an Olympic figure skater - and that's okay.  I don't want anyone "letting me" skate in the Olympics or giving me a gold medal I didn't earn.  I can't skate, and that's okay.  I have other things I'm good at - reading and writing and singing.  I know where my strengths lie.  So maybe basketball isn't that kid's strength.  I'm positive that he has other areas where he shines.  Cultivate strengths, not weaknesses.  And if that kid really, really, really wants to play basketball, don't just let him play on a team because he wants to.  Teach him how to shoot and dribble and pass.  Have him practice until one day, he might actually be good enough to play competitively.  Treat him like an equal, like a true member of the team.

The real world doesn't bend over backwards to cater to disabled people, and I would never want it to.  People with disabilities, parents and professionals alike need to learn a new term now, a term that I'm inventing - dignity of loss.  Just as you need to let people make their own mistakes, you also need to let them lose their own games.  Let them fail.  Teach them how to pick themselves up, and how to lose graciously.  Let them realize that the world keeps turning, even if you didn't win, even if you didn't score that time.  And finally, let them earn their own victories.  Success is so much sweeter when it's earned, not given on a silver platter.

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I'm 20 and I'm Tired

Inspired by/response to I'm Tired, by Robert A. Hall, mistakenly attributed to Bill Cosby.

I'm 20 and I'm tired.

No, I'm not just tired, I'm bone-weary, literally exhausted.  I deal with multiple chronic conditions that cause fatigue.  And if my conditions themselves don't completely exhaust me, the medication I take to control them and keep me a functioning human being does.  On top of all of this, I am a full time college student who is currently in classes six hours a day with only an hour's break for lunch which is frequently taken up by meetings.  Because I am the type of person that wants to change the world and mistakenly thinks she can take up the mantle of every cause that comes her way.  Starting in April, I will be out in the field helping to teach the children of America, and even that hour's break will shrink.

I'm tired of having my competency as a teacher questioned.  I'm tired of having my right to exist as a human being questioned.  I'm tired of people killing people like me and claiming it was in the name of "mercy".  I'm tired of being told to sit down and shut up, because I can't possibly know what it's like for real disabled people.  I'm tired of being told I'm inspirational for attempting to pull myself up by my broken bootstraps, because that's the only way anyone ever gets anywhere in this society, even if we don't have bootstraps to speak of.

I'm tired of hearing killings by Muslims attributed to religion; while killings by members of any other religion are attributed to mental illness.  I'm tired of all members of a community being painted with the same broad brushstrokes as a member who did something terrible.  I'm tired of things about us being without us.  I'm tired of that being considered not only acceptable, but ideal. 

I'm tired of being shut out of the normal teenage/college student jobs because I don't have the physical ability or stamina to do them.  I'm tired of having to depend on my parents for every drop of money that comes my way.  I'm tired of working working working, barely eating, barely sleeping, putting my health at risk, for nothing but a pat on the back and a meaningless grade on a piece of paper.  I'm tired of leaving the "former employers" section on job applications blank.  I'm tired of personal attendant services and transportation being seen as optional, instead of necessary.  And I'm tired of my friends on benefits being made out to be lazy, when that money is the only hope they have of survival.

I'm tired of the assumption that everyone can drive or own a car.  I'm tired of being dependent on agencies that have no idea what my life is like or what my financial situation is.  I'm tired of the world being so panicked over "benefit scroungers", that those who are truly in need are denied, and denied, and denied again.  I'm tired of having to be grateful that I was born when I was, otherwise I would've been shut in an institution.  I'm tired of remembering that places like that still exist.

I'm tired of the discourse on disability being purely medical, barely scratching the surface of what that word, that experience means.  I'm tired of words like "suffer" and "afflicted" and "disease".  I'm tired of disability as a cultural identity being ignored at conferences and events, when we're all shouting it from the Internet, begging, pleading to finally be heard.  I'm tired of being an afterthought.

I'm tired of privilege.  And yes, it is a thing.  I'm tired of playing life on hard mode.  I'm tired of our little splintered movements that don't include each other.  I'm tired of the irony; that nondisabled women fought for so many years to be seen as more than sexy, and disabled women are still fighting to be seen as sexy at all.  I'm tired of being scared to roll around campus at night, because I can't defend myself if someone attacks me.  I'm tired of knowing that I'm nearly the perfect target for an attacker - small, weak, female, disabled.  I'm tired of the world beating me and others like me to the ground, then being surprised when we're unable to rise.

Yes, I'm damn tired.  And I'm terrified to be 20.   Because if I'm this tired now, who knows how tired I'll be at 50, or 80, or 100?   I fear for myself.   I fear for the world.

And now, I think, I will go take a nap.

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An Open Letter to the Students of PSY160

Dear fellow students,

It has come to my attention that some of you drop PSY160, more commonly known around KU as Human Exceptionalities.  It seems the wheelchair experiment is a deal breaker for you.  You don't want to spend three hours going around town in a wheelchair, seeing how people react to you.

You don't want to do it?  You don't want to see the way people look at you, and then look through you, like you're some strange species of animal that doesn't quite exist?  You don't want strangers to invade your personal space and ask you intrusive questions?  You don't want to be "helped" by well meaning strangers who aren't helping at all?

Maybe you don't want to have to deal with ramps and elevators that sometimes don't exist.  You don't want to navigate narrow aisles that were never meant for wheelchairs.  You don't want to hear the clatter and feel the embarrassment in your cheeks when you realize that you've knocked over a display again, and you rush out before they realize it was you.  You don't want to be called a fire hazard and segregated in special cripple ghettos in the name of false "safety".  You don't want people to stop you on the street to tell you that they'll pray for you, or that you're inspiring, when all you want to do is go get your lunch like everyone else.  You don't want to roll through snow and ice, risking your safety while everyone around you makes tired jokes about speed limits and snow tires.  You don't want to feel like there's a constant spotlight above your head, marking you as different.  You don't want people to pity you.

You don't want to do it, I understand that.  Because I don't want to do it either.  But unlike you, I don't have a choice.  For the past three years, I have navigated the KU campus with the help of my trusty motorized scooter.  I have gotten my scooter stuck in snow that no one bothered to clear, making it physically impossible for me to get to class.  I have dealt with a broken dining hall elevator that limited my freedom to choose where I'd like to eat for weeks on end.  I have watched people yank their friends out of the way by their coat sleeves, as if they're afraid my scooter is a Mack truck intent on running them over.  And that's just on campus - back at home, where I roll (pun intended) with a large group of wheelchair-using friends, the effects are multiplied tenfold.  I would never choose a different life - I rather enjoy my life on wheels, and my scooter has given me more independence than I could've ever dreamed of before.  But I dream of a day when a wheelchair is nothing special, just another way of getting around.  I dream of a day where the same opportunities that are afforded to those of you who walk on two legs are afforded to me.  I am not asking for a cure - I am asking, begging, pleading for acceptance.

I am your peer, your classmate, your friend.  And choosing to drop a class rather than come to face-to-face with the struggles I face every day demonstrates the height of cowardice and reinforces your comfortable able-bodied privilege.  Because unlike you, I can't walk away.  I can't drop the class and go on my merry walking way.  As much as I don't want to, I have to face the tirade of bigotry, prejudice and ignorance that is spat in my face on a daily basis.  I have dealt with this in one form or another for twenty years.  And you can't possibly deal with it for a few hours?  I pity you.  You'll never see life through my eyes, even for the briefest of times.  I have gained strength out of necessity, and you will too, through this project, if only the tiniest fraction.  If you are considering dropping this class for these reasons, I ask you to please reconsider.  It might surprise you to experience how the other half lives.  Maybe, just maybe, you'll think next time you rush to "help" someone using a wheelchair without asking them first, or when you park in a handicapped space because you'll "only be a minute".  Maybe you'll change your attitudes.  Societal change starts with one person - be that person.  Help us blaze a new trail - accessible for all.

Sincerely,
A fellow student

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I Have A Dream

On this day....

On this day, a great leader was born and another was sworn into office.  On this day, two great men of color began journeys into history.  On this day, barriers were broken.  On this day, I have a dream.

I have a dream that on this day, sometime hopefully not so far into the future, our new president will roll up to that podium.  That our new president will take the oath of office in sign language, or have happy flappy stimmy hands while reading their speech.  I have a dream that one day, our nation will be forced to listen as our president makes their way through their speech with the thick accent of palsy.  I have a dream that our president will someday be -

out and proud DISabled -

the DIS means something, you know.

 I have a dream that someday all our children will play together, regardless of how they play.

That people will walk, roll, and crutch in harmony together, on their way to work, play, and everything in between.

I have a dream that the heavy black curtain of stigma and shame that smothered FDR will be drawn aside in favor of the blinding light of pride.  That my future children will not have to face questions about the competency of their upbringing, just because they have a disabled mother.  That all ways of experiencing the beauty of the world will be seen as equally valid and equally breathtaking.

I have a dream someday, the worthiness of life will be judged on the quality of it, not the abilities contained within it.  That, when life is deemed unlivable, steps will be taken to make it livable, not end it.  That those locked up in institutions will be set free, just as the slaves were set free so many years ago.

 I have a dream that we will practice acceptance, not just preach it.  That tolerating will be swept away in order to make room for accepting and embracing all our unique differences.  That all will be free to travel the earth and taste its sweet nectar.  That we will all drink from the fountain of equality.

I have a dream that someday, we will look back on our footsteps, crutch-prints and wheel tracks in the sands of time, and see just how far we have come.

On this inauguration day, on this birth day of a great change-maker, I have a dream.

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