I Am My Wheelchair and My Wheelchair Is Me

Today, a close friend called me with somewhat of an emergency.  Her wheelchair had suddenly given up the ghost, she didn't have a backup, and could she please borrow my scooter for a few days?

I, of course, said yes. I have my new powerchair if I need it, and as any plans I may have had were derailed smoothly by a bout of the chicken pox, I wasn't planning on needing either my chair or my scooter for at least another week.  Besides, my friend had an important meeting on Tuesday which she couldn't afford to miss. I was happy to help her out.

But I can't deny that it feels queer - queer in the "odd or strange" sense of the word - to know that someone else is out there, using my scooter.  That scooter was the first piece of true independence I ever had, the revelation that I could sit and move at the same time.  It was with me though times of great happiness and times of great sorrow.  It literally propelled me through some of the most difficult moments of my life.  It carried me through so many adventures during my three years of college.  It got stuck in the snow, tipped over on a rocky path, and explored the far reaches of campus and town.  My scooter was my chariot, my scooter has a history, and right now it feels like someone else is wearing my skin.

The title of this piece makes me uneasy, because I don't want people to make the assumption that I am defined by my wheelchair alone - of course not.  I am not the human embodiment of a wheeled mobility device.  But I can't deny that my scooter - and my other mobility aids, for that matter - take on sort of lives of their own by being mine.  I know them all, all their little quirks and creaks.  And while I"m still getting to know my new chair, I have no doubt that I'll come to know it just as deeply as I know my scooter.

So when I or someone else tells you not to touch their mobility aids without asking, when we become uncomfortable when you commandeer our wheelchairs to play racing games, when it takes us time to break in a new aid or when we cry to see our old ones go - please respect that.  Because our mobility aids are not merely machines, they are part of us, intertwined with our history and our lives.  Please, treat them with as much respect as you would treat us.  All our lives will be better for it.

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Rise Up While You Can - My Speech for the 2014 Day Of Mourning: Remembering People With Disabilities Murdered by Caregivers

This is my speech that I read yesterday, March 1st 2014, at the NYC Vigil for People With Disabilities Murdered by Family/Caregivers.  For more information about the Day of Mourning please go to http://autisticadvocacy.org/2014/02/day-of-mourning-2014-2/.

Hello everyone and welcome to the New York City Vigil for People With Disabilities Murdered by Parents and Caregivers. I’m Cara, the site coordinator for the NYC vigil. This vigil is part of the National Day of Mourning 2014: Remembering People with Disabilities Murdered by Caregivers organized by the Autistic Self Advocacy Network, Not Dead Yet, and many other organizations that have rightfully taken a stand against murder.

If somehow you have ended up in the wrong place and you weren’t planning on being here, you’re free to leave, but I urge you to stay and listen to what we have to say. This is a tragic and deeply disturbing issue that is, unfortunately, only growing.

Before I start, I’d like to take this time to thank Sam Barwick, Emily Baillou, and Jason Ross for helping me organize this vigil. I could not have done this without their support.

A few accessibility notes – we unfortunately were not able to get a sign language interpreter in time for the vigil due to time and budget constraints. Hopefully, if all goes well, we will have captioned video up on Youtube or another video site within a few weeks.

We do have a program available for you to take. This program contains a brief overview of the schedule of the vigil, the reasons for gathering, and the list of the names of the victims. If anyone would like me or one of the other organizers to describe the images contained in the program and/or read aloud the content, we would be more than happy to do that. In addition, if you would like a PDF copy of the pamphlet, please leave your name and email address with me before you leave today.

Please note that this vigil will contain extensive discussion of murder and other triggering issues. If you feel the need to leave at any time, you’re welcome to leave, you’re welcome to come back, you’re welcome to do whatever you need to do. We are here to mourn others, but we must not neglect ourselves in the process.

Though ASAN is the main sponsor of the Day of Mourning, it’s important to realize that this issue is truly cross-disability. This isn’t just about people with developmental disabilities, or intellectual disabilities. There is not one disability group that has been untouched by the murders happening in our community. Though we are divided at the best of times, during these times of trouble, we must unite to stand (and sit) in the path of injustice.

The problem is two-fold. First is the murders themselves. They represent a shocking lack of value for disabled lives, by the very people who are supposed to love unconditionally. Though we are often told to put ourselves in the shoes of these very parents and caregivers, those same people take lives without putting themselves in their victim’s shoes.

The second is the public and media reaction to these murders. Rather than expressing outrage, as is the usual reaction to the murder of a non-disabled person, the media and general public often express sympathy for the murderers, citing lack of services and the joint “suffering” of caregiver and client as justification for murder. If these killers are sentenced at all, their sentences are typically far lighter than the sentence they would have received if they had murdered a non-disabled people.

We come together today to mourn, but far more importantly, to express outrage. We are the largest minority, yet our voices have not been heard. We must be silent no longer, we must scream to the heavens that this is unacceptable. Perhaps if we are loud enough, our voices will finally be heard. If we save just one life, it will all be worth it.

In the words of Georgia Mason, protagonist in Mira Grant’s “Newsflesh” trilogy, rise up while you can.

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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.

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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.

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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.  

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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.

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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.

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