Wednesday, February 12, 2014

What To Do When You Meet An Able-Bodied Person

Inspired by What To Do When You Meet a Sighted Person

People who have an extreme amount of energy, experience lower than normal levels of pain (or only feel acute pain), and move through the world on two legs are classified under the umbrella term "able-bodied".  The defining characteristic of an able-bodied person is that they are essentially bipedal for most of their daily activities, though other symptoms like reduced pain tolerance and an abnormally high amount of energy are also common in this population.  Despite their shortcomings, many able-bodied people can lead nearly normal lives.  Able-bodied people work, play and love - just like you!

How do able-bodied people get around?

Like normal people, able-bodied people use public transportation and drive their own motor vehicles.  However, most able-bodied people need special adaptations to their cars in order to control them with their feet.  These adaptations are called foot pedals and consist of two small pedals installed on the floor of the vehicle - one for gas, one for brake.  With time and practice, some able-bodied people can master operating a car with hand controls, but most able-bodied people will not have the upper body coordination necessary to drive a car safely with hand controls.

Able-bodied people also use their two legs to propel themselves from place to place, a method commonly referred to as walking, or sometimes jogging, sprinting, or running, though these terms are reserved for bipedal movement of an unusually quick pace.  This method has resulted in the formation of walking distance among the able-bodied population.  Walking distance is a semi-standardized unit of measurement referring to the distance one can walk before fatigue sets in.  It is important to note that these distances are quite long, often covering the span of several miles.  Because the concept of walking distance is so crucial, able-bodied people are often confused when someone cannot walk this prescribed distance.  This confusion is natural and will diminish over time if able-bodied people are exposed early and often to their normal peers.

How do I greet and communicate with an able-bodied person?

Able-bodied people place a high emphasis on eye contact.  It is important to get onto their level when greeting them, otherwise they may be offended.  As able-bodied people rely on their legs to support themselves, it is necessary to look up at them in order to maintain eye contact.  Able-bodied people also greet each other with intimate gestures, such as the handshake or the hug.  These gestures serve as communication in a variety of situations.

Though gestures can serve as some limited communication, able-bodied people communicate primarily through verbal utterances produced from the throat and mouth.  Communication through other means, such as writing, typing, or computerized speech, is rare and makes most able-bodied people profoundly uneasy.  Be patient.  Contrary to popular opinion, able-bodied people are capable of learning.  It may take time, but it is your job to desensitize able-bodied people to normal ways of speaking and moving.

How can I best assist able-bodied people?

Because able-bodied people move around solely on two legs, their balance is often compromised.  Offer to help able-bodied people when you see them on the street, particularly in wet or icy weather.  Though the over-powered musculature of their lower body can compensate quite well for their shortcomings, sometimes assistance is still needed.  If you see an able-bodied person struggling, always offer to help.  They will be grateful for your assistance.

How can I support able-bodied people?

Able-bodied people have the same feelings and desires as the rest of us.  If you are looking to become a professional in the field, programs like Best Buddies facilitate friendships between able-bodied people and normal people.  Though able-bodied people mainly enjoy activities that rely on bipedal movement, such as jogging, other activities can be adapted so that able-bodied people can fully participate.  Most of all, treat able-bodied people with compassion.  You can help relieve their suffering with just a kind word or a few dollars.


Friday, February 7, 2014

No, I Won't Stop Calling Myself a Cripple (And Here's Why)

Over the years, I've faced a lot of backlash for choosing to call myself a cripple.  I've had people flinch every time I say it.  I've had people try to convince me to use all sorts of alternatives.  I've had people act like the word was a personal insult to them.  To them, mind you.  Not to me.

And here's where we get into the root of the problem of language policing: When you are a member of an oppressed minority, privileged people run your life. Privileged people decide where you go, how you're going to get there, and if you'll be allowed in once you're there. Privileged people make decisions that can quite literally end your life. Oppressed people have very little power to determine their own lives. The one area we DO have power in is in the language we use to refer to ourselves. And when you refer to yourself with a word like "cripple", you take it back from the privileged. You are refusing to let them control you. That is a daring, subversive, political act. It may just be a chink in the walls that surround us, but it is a chink, and we can expand that chink, stick our fingers in it and pull until the walls come tumbling down. When you police our language, you are not an ally.  You are helping to build the very barriers you claim to help dismantle.

Being privileged is inherently self-centered, whether we mean to be self-centered or not.  Society caters to our needs, gives us jobs and food and roofs over our heads.  Just by the nature of being white, I don't have to fight for things.  I do have to fight because I am a woman and because I am disabled, but by nature of my skin color, things are inherently easier for me.  There is no argument there.  If I wasn't white, if I wasn't straight, I would have a hell of a lot harder time of it.  I know this.

Do you think I'm ignorant of the power that words like "cripple" and "freak" hold?  I am all too aware.  Now that I am a student in a Disability Studies Master's program, I am learning more about the history of my people, and how those words were used to destroy us.  I do not use the word "cripple" out of ignorance; rather, the opposite.  I use it because I know the power of words far too well.  If I call myself a cripple, I have taken the wind out of my oppressor's sails.  I have diluted the power of their weapon.

So, no, I will not stop calling myself a cripple.  Because a cripple is what - and who - I am.  Until the word doesn't sting, until words like that aren't thrown like knives in our faces, until no one remembers those days anymore - until we have reached that point of evolution, I will keep using the word cripple, and the word gimp, and the word freak.  And if you consider yourself an ally to me, to my community, you will not tell me what language I can use to refer to myself.  If you consider yourself an ally, and if you police my language, you are not an ally.   You are doing it wrong.

For all those who try to tell me what I can call myself, remember that I wear my identity like a neon badge of honor.  I am a fucking cripple and I am fucking proud.

Saturday, January 25, 2014

Ed Roberts: The Civil Rights Leader That Time Forgot

Within earshot, my mother asked the doctor whether I would live or die. "You should hope he dies, because if he lives, he'll be no more than a vegetable for the rest of his life. How would you like to live in an iron lung 24 hours a day?" So I decided to be an artichoke...a little prickly on the outside but with a big heart. You know, the vegetables of the world are uniting, and we're not going away!  -From Highlights From Speeches by Ed Roberts

Last Monday was Martin Luther King Jr. Day.  Across the country, millions of people received time off from school and work, millions of people honored King's legacy.

But there was another holiday last week, celebrating another great civil rights leader, that went quietly unnoticed by people not in tune with disability culture.  It was Ed Roberts Day.

Ed Roberts was a teenager when he contracted polio, which left him unable to move any part of his body below his neck, except for two fingers, and unable to breathe without the aid of an iron lung.  After a period of trying to commit suicide, Roberts decided that he was going to live life on his own terms.  He taught himself to swallow air so he could spend short periods outside the iron lung, using a power wheelchair.  He completed high school mostly by phone.  And then, after completing community college, he decided he wanted to go to the University of California at Berkeley.

Now, in the world we live in today, the world of the Americans With Disabilities Act and the Individuals With Disabilities Education Act, this may not seem like such an implausible idea.  But remember, this was 1963.  The world was having a tough enough time with the suggestion that Black people should be equal members of the population.  The suggestion that disabled people - particularly disabled people who needed as extensive support as Roberts - should be afforded equal opportunities as well was ludicrous.  Roberts was practically laughed out of the school.  An admissions officer told him:  "We've tried cripples before and it didn't work."

But Ed Roberts was undeterred.  Eventually, the university allowed him to attend - and he set up a one-man dorm room in the university infirmary, which was the only place on campus that could accommodate his iron lung.  Nowadays, of course, we'd call that discrimination, separate and unequal.  And it was discrimination in those days too.  The only difference was that it was completely and totally legal, and Ed Roberts wisely took what he could get.  He attended classes, flirted with girls, and participated in the liberal hippie culture of the '60s - just like everyone else.  That equality was hard-won, and it was huge.

By 1967, word had spread, and eleven other physically disabled people had joined Roberts in the infirmary dorm.  They called themselves The Rolling Quads and together they helped to found the Disabled Student's Program (DSP) at Berkeley - a program that is still regarded as one of the best in the nation for physically disabled students.  Roberts and his comrades helped other disabled students get jobs, find apartments, and succeed in life.  What grew out of that was an astonishing organization - the nation's first Center for Independent Living.  Eventually, Roberts was selected to become the Director of the State Department of Rehabilitation.

Ed Roberts was a pioneer.  Without his willingness to subvert the status quo and encourage others to do the same, the laws that protect our rights probably would have never been enacted.  Without Ed Roberts, I would not have been able to dorm at my college.  I probably would not have been able to go to college at all.  Ed Roberts knew that we deserved equal rights, and he went after them.  Sound familiar?  I could say the same about Martin Luther King Jr.

Yet no one taught me about Ed Roberts.  He wasn't mentioned in my textbooks.  There were no lessons exploring his impact.  I learned about him on my own, at age fourteen, desperately clicking from blog to blog, website to website, gulping down the information greedily as if at any moment my history would be stolen from me.  I learned about him alone, in my basement, privately constructing my own revolution of thought.

So I am telling you now - THIS was Ed Roberts.  THIS was our Martin Luther King Jr.  He deserves to be honored.  He deserves to be remembered.  And while I hope to God that someday, every schoolchild will know Ed Roberts' name, this is my contingency plan.  This post, these words are to make sure that disabled children in future generations will know who Ed Roberts was, will know that they had a leader and that people fought for their rights before they were even born.

Take a good, long look, kids.  This is your Martin Luther King Jr., this is your Elizabeth Cady Stanton.  This is Ed Roberts.

(Videos show Ed Roberts on "60 Minutes" and excerpts from Ed Roberts' speeches, respectively.  Transcripts are available at the YouTube links.)





Information obtained from No Pity by Joseph Shapiro as well as Internet sources embedded in this post.  

Wednesday, January 15, 2014

Explaining Inspiration Porn to Non-Disabled People

Author's note:  This was inspired by Explaining Rape Culture to Men (Hilariously).  It is set up in Q and A format, with a non-disabled person as the questioner and a disabled person as the answerer/explainer.

I'm graduating!  While disabled!  You still don't get to call me inspirational!

[Image description:  I'm a fairly short white girl dressed in maroon graduation robes and a maroon graduation cap.  Around my neck are blue and yellow honor cords and a medal for academic excellence.  I'm leaning on my fuchsia and black flame pattered walker.  My diploma case is resting on my walker seat.  Behind me snow, bushes and a brick building are visible.]



Q.  So, what's this "inspiration porn" everyone's talking about?  It sounds so...ew.

A.  Ew what?

Q.  It sounds so...porny.

A.  What?!  No!!!  I mean.  There is crip porn.  That's a thing.  Some disabled people like porn just as much as not disabled people do.  And....why am I even talking about this???  This is not what we're talking about!  We're talking about....what were we talking about?

Q.  Inspiration porn.

A.  Right.  So.  You know those memes and stuff?  Like the one of the girl with the prosthetic legs running alongside Oscar Pistorius that says "The only disability in life is a bad attitude."?

Q.  Who's Oscar Pistorius?

A.  He's the Olympic athlete who...WHY AM I DOING THIS, STOP MAKING ME GO OFF TOPIC!!!

Q.  ....sorry?

A.  Forget it.  It's this meme*.  You know this meme, yes?

Q.  Oh, THAT meme!  Sure do!  I shared it on my Facebook last week!

A.  What's the first word that comes to mind when you see that little girl?

Q.  Inspirational!

A.  And why is that?

Q.  Because she's still smiling!

A.  I'm sensing a "despite" in there.

Q.  Despite.....well, she has no legs!

A.  And that's a reason she should be unhappy?

Q.  Well, yeah.  Obviously, having no legs is a bad thing.  Right?

A.  Not really.  There are plenty of people who have no legs or no arms or are otherwise disabled -

Q.  ERMAGAHD SAY PEOPLE WITH DISABILITIES!!!  YOU ARE NOT DEFINED BY YOUR DISABILITY!!!!!

A.  And why, precisely, would I not want to be defined by my disability?

Q.  Erm...because...

A.  Exactly.  Because disability is supposed to be a Bad Thing.

Q.  It's not?

A.  It's not.  As I was saying, there are plenty of disabled people who are perfectly happy with the way they are and wouldn't want to change themselves.

Q.  But how can that be?

A.  Are you happy with the way you are?

Q.  More or less, I guess.

A.  Would you want to change the way you are?

Q.  Well, I'd like a bit more money...

A.  Don't we all.  But I'm talking about the things that are fundamental to your identity.  The things that make you you.

Q.  Well, if they make me me, I wouldn't be me anymore if they changed, would I?

A.  Now you're getting it.  Most disabled people consider their disabilities a fundamental part of their identities and can't imagine their lives without disability.

Q.  So inspiration porn is bad because it automatically assumes that disabled people shouldn't be happy with their lives?

A.  No.  Well.  Yes.  But there's more to it than that.

Q.  There's more?!?!

A.  Indeed.  What's the first thing you think when you see one of those memes of a disabled person or, say, if you see a woman using a wheelchair at your gym?

Q.  Well, if she can get up in the morning and do this without complaining, so can I!

A.  How do you know she doesn't complain?

Q.  Erm....

A.  Right.  You don't. You're just making assumptions.

Q.  Oops.

A.  Yeah, big oops.

Q.  So I shouldn't be inspired by her?

A.  Well, that depends.  Has she done anything particularly inspiring?

Q.  She -

A.  Besides getting out of bed in the morning.

Q.  ...I dunno.

A.  There we go, with those assumptions again.  What makes getting out of bed in the morning and going to the gym so inspiring?  You do it.

Q.  But she - I mean - she has so much more to deal with than me!

A.  Well, let's see.  She probably gets out of bed in the morning, brushes her teeth, has a nice breakfast.  Maybe reads the newspaper and gives her husband - or her wife, you know, crips can be gay too - the part they like most.  Maybe she has kids that she needs to get to school.  She probably grabs a coffee on her way to work - maybe she's a high powered corporate attorney, or maybe she works at McDonalds, or maybe she works from home.  Then, after work, she comes home, eats dinner and binge watches "Star Trek" on Netflix, because she has good taste.  And then on the weekends, she wakes up early and goes to the gym to get a workout.  Does any of that sound substantially different or more difficult than what you do?

Q.  I don't like "Star Trek".

A.  Blasphemy.  We'll fix that later.  Besides your questionable taste in television....any differences?

Q.  ....Not really.

A.  Do you consider yourself to be particularly inspiring?

Q.  I dunno....not particularly...I'm just a regular person.

A.  So is she.  I bet she doesn't consider herself inspiring anymore than you consider yourself inspiring.

Q.  But I don't get it.  Why is it so bad if she motivates me to become a better person?

A.  Because a) she's not doing anything particularly motivating and b) she doesn't exist to motivate you.  Reducing a human being - and a stranger, at that - to "inspiring" or "brave" or any of those labels is problematic, because you're filling in qualities that may or may not be true in order to make yourself feel better.  It's using disabled people as tools for your own betterment.

Q.  I see what you mean.  I think I'd be upset if someone who didn't know me was using me as a tool without bothering to get to know me, too.

A.  So give me a quick summary of what we talked about.

Q.  I - what?!  Is this a test???

A.  Yes.  I was an education major in college.  Summary, please.

Q.  Ummm....inspiration porn is when disabled people are called inspirational or brave for doing all the things that regular people do.  It's a problem because it assumes that anyone with a disability must have it so much worse than the rest of us.  And because it uses disabled people to make us non disabled people feel good about ourselves, or to make us do something, like exercise or whatever.  And disabled people aren't tools, they're people.

A.  Got it in one.  I applaud you.

Q.  So it has nothing to do with porn, then?

A.  No.  The reason it's called inspiration porn is it objectifies disabled people just like regular porn objectifies woman.

Q.  Porn objectifies women?

A.  ....*sigh*.

*Image description of the meme:  A young girl, maybe about 3 or 4 years old, runs alongside Oscar Pistorius in a gym setting.  She has the same blade-type prosthetic legs that he has and her arm ends in a stump about where the hand would be.  He is wearing a marathon-style nametag that says "Pistorius".  Superimposed over the picture is:  "The only disability in life is a bad attitude." -Scott Hamilton.

Monday, January 13, 2014

Why Keeping Guns Away from the "Mentally Ill" Won't Solve the Gun Violence Problem

Author's note:  This post was edited slightly from the original to remove references to gender dysphoria being in the DSM.  I now know that many trans* people feel it is a good thing and allows them to seek treatment.  They do feel that transness is a medical condition.  Therefore, I have "checked my privilege", so to speak, and removed the references.

Today, two people were shot at a Florida movie theater.  One of them died, the other was wounded.

I think it's pretty much past argument now that we have a gun problem in this country.  Blame it on whatever you want.  Blame it on video games, on the political left, the political right, on bad parenting.  Blame to your heart's content.

I'm waiting.

I'm waiting for someone to blame it on mental illness.

Because that's what always happens when a tragedy strikes.  When someone pulls out a gun.  The shooter is immediately dismissed as "crazy", "batshit", "mentally ill" and the immediate situation is spun into a plea for laws that prevent mentally ill people from owning guns.

But how do we define "mentally ill"?

Do we go with the seemingly simple definition, that anyone diagnosed with a condition from the Diagnostic and Statistical Manual (DSM) is prohibited from owning a gun?  Well, then, that would prohibit anyone with any number of conditions from owning a gun, including increasingly common conditions like major depressive disorder, autism spectrum disorder, anorexia, bulimia.   According to the National Institute of Mental Health (NAMH), in a given year, more than 26% of adults can be diagnosed with a mental disorder in a given year.  That's more than one quarter of the adult population that could be prohibited from owning a gun under that broad definition.  It's also important to note that definitions of "mental illness" are fluid and have changed with the times.  Homosexuality was included in the DSM until 1973.

If we prohibited gay and lesbian people from owning guns, there would be a national outcry.  Why, then, is there no outcry when we consider prohibiting those with psychiatric disabilities from owning guns?

"Okay." you say.  "But what if we limited it only to those who are violent?  Surely that would reduce all this gun violence we're facing!"

Putting aside, for a moment, the minutiae of that suggestion - would it be only those who have acted on violent urges?  Those who have expressed desire to do harm to themselves, but not to others?   To others, but not themselves? - violent thoughts and urges are very often not visible.  Mental illness is just that - mental.  It is literally "all in your head".  Many people with mental illness suffer in silence, afraid that their complaints won't be taken seriously.  It is impossible to tell for sure whether someone has a mental illness, or, more to the point, is having violent thoughts, unless, of course, you are that person, or the person tells you themselves.  And with new laws like the one in my home state of NY, designed at reducing violence by requiring that mental health professionals report when a patient is “likely to engage in conduct that would result in serious harm to self or others.”, people with psychiatric disabilities will be even more reluctant to admit that they may have mental health issues.  So, truly, it is impossible to determine, once and for all, which people have mental illness and violent thoughts.  There is always a chance that someone, somewhere, may own a gun and have violent urges.  And whether violent urges on their own are a sign of mental illness or just a sign of the times is up for debate, as well.

So don't villainize people with psychiatric disabilities in your quest for a safer world.  We have enough stigma heaped on our shoulders.  Find another way to end gun violence - a way that might actually work.  We cannot be your scapegoats anymore.

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.

Signed,

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