One Year Ago: What Ableism Didn't Do

(This is my second post for Blogging Against Disablism Day (BADD).  It's a follow-up to my post last year - you don't have to read the post from last year for this one to make sense, but it might be a good idea.)

One year ago.

That's how long it's been.

One year ago I stood shaking from head to toe in a teacher's lounge bathroom trying not to throw up from sheer anger, shame, and anxiety.  One year ago, I listened to you call me belligerent for standing up for myself.  One year ago, I heard you say these exact words:

"I'm forced to conclude that either you've been making excuses, or you haven't been being truthful with us."

Do you remember those words?  Do you remember that meeting, that two hour meeting, where you said "This isn't about your limitations, you're the one who keeps bringing them up"?  Do you remember how hard I cried?  Do you remember telling me that you couldn't recommend me for student teaching?  Do you remember how you looked at me like I had three heads when I mentioned the Disability Services Office, and how you skated around the word disability so many times?  How I finally snapped and said "You can say "disability", you know.  I'm not afraid of it."?

I'm still not afraid of it.  I wasn't then, and I'm not now.

One year ago, I was effectively kicked out of the education major at a university that is fairly well known for their education program.  I was given a choice to switch my major or graduate without teaching certification.  Kicked out for no other reason than my disabilities.  Because a disabled teacher will apparently lose the respect of her students.

One year ago, ableism knocked me down.  But I got back up.  Here's what ableism DIDN'T do.

Ableism didn't stop me from getting my diploma.  In December, I walked across that stage with my head held high, silently shouting "FUCK YOU" to everyone who tried to stop me from getting to that moment.  I now possess a B.S in Education - which, given what happened, is an appropriate abbreviation.  I don't have teaching certification, but that's okay.  I have my own path.

[Short girl wearing maroon graduation robes and cap leaning on a hot pink walker with snowy bushes in the background.]

Ableism didn't stop me from getting a job - two, actually - as a freelance writer for two different websites.  It's not a usual job.  It's not a job with an hourly wage.  It's not a 9 - 5, go into an office job.  But it makes me a little money sometimes, which is more than I had before.  It gives me hope that someday, someone might want to hire me "for real".  Someday, I may be able to support myself.  And one of the very first things I wrote?  Was about how accepting the students in the classroom I did my field experience in were of my disability.  I said nothing about the attitudes of the adults.  Do you feel ashamed, that a group of third graders was more mature than you?

And finally, ableism didn't stop me from going for my dream degree - a M.A in Disability Studies.  I've been dreaming of this program since high school and nothing and no one - no, not even you - was going to stop me.  I'm nearing the end of my first semester in the program and I enjoy it in a way I never enjoyed the education program.  I look forward to going to class each week and I've made some great friends - and even found a boyfriend.  Finally, I get to do what I want to do.  No thanks to you.

I hesitate to say I've recovered, because I haven't.  I hesitate to say I've forgiven and forgotten, because I most certainly haven't.  So many nights over the past year, I've lain awake at night obsessing over the events that happened to me, the things that were said.  Trying to figure out what the fuck happened.  I have obsessed and cried and been unable to get it out of my head.  I have launched myself into a full scale panic attack a week before graduation because I knew I'd see you and the others who did this to me.  I have been traumatized, and it's sadly not the first time.  The scars on my soul will never fade completely.  I hope you're proud that you put them there.

But I've moved on and I'm kicking ass, in my own way.  Ableism did a lot of things.  But ableism didn't break me.  And because of that, you failed.  You thought you won, but you didn't, not really.  Because I bounced back, a little more bruised, a little more bloody, but I bounced back.  I hope someday, something I wrote lands in your inbox and you feel ashamed of what you did to me.  A sincere apology would be nice, but more than that, I hope you never treat someone the way you treated me ever again.  Change is a powerful thing, and I hope you learn lessons from the things you did to me.

I'd like to end with a quote from one of my favorite songs, Brave by Sara Bareilles.  I don't think it's a coincidence that both this song and Roar by Katy Perry - two absolute anthems against bullying, hatred, and oppression - came out the summer after I was forced out.  I don't believe in God, but I do believe in Fate - and I think Fate gave me the tools to get through my experiences.  As long as I live, I will fight to make sure no one has to go through what I went through.  You fueled my activist fires even more.

Your mistake.

"Nothing’s gonna hurt you the way that words do

When they settle ‘neath your skin

Kept on the inside and no sunlight

Sometimes a shadow wins

But I wonder what would happen if you

Say what you wanna say

And let the words fall out

Honestly I wanna see you be brave

With what you want to say

And let the words fall out

Honestly I wanna see you be brave"

Read More

Disability Is Not Your Get Out of Jail Free Card

(This is my first post for Blogging Against Disablism Day (BADD).  Also known as "this will be my BADD post if I wake up tomorrow and don't have the spoons to write the one I plan to write.)

There's a post that popped up today from a fairly well-known "autism parent" that talks about closed groups on Facebook where autism parents can talk about their reality, also known as "how awful their lives are".  I'll let said parent do the talking:

"This is a group that lives with “severe” or “extreme” challenges; aggression, self-injurious behavior, intensive behavioral challenges. Their lives are almost unmanageable. Their children (including adult children) require so much care, that these families struggle to make it through each day."

Said parent then proceeds to quote members of the group who say that they have wanted to kill their children, how difficult it is for them, etc. etc.

All throughout the comments parents applaud, saying this post was needed, saying that they, too, deal with these challenges, they, too, have wanted to kill their children.  They say that better services are needed and that they would do anything for a cure.  They mistakenly assume that autism acceptance means that autistic advocates and allies all think autism is a blessing, all rainbows and sunshine.

Autism isn't a blessing.  Neither is any other disability.  My disabilities are not blessings, nor burdens.  They just are.

I grew up around several people who were "severely" autistic.  I saw what they and their families went through.  I'm still seeing it.  I'm not oblivious to the very real struggles that disability can bring.  I go through them myself.  But that does not, and will never, justify hurting your children, or worse.

What is it about autism (and other disabilities) that serve as a metaphorical "get out of jail free" card?  When parents shake their babies to get them to stop crying, we (rightly so) protest and demand that these parents serve appropriate jail time.  When parents of autistic children abuse their children, we apparently demand sympathy and compassion for abusers and murderers.  Don't believe me?  Take a look.

This is a comment from an article about a man on trial for murder after shaking his baby daughter:

[Text reads:  "Hang him - but first shake him half to death!!!  What a smiling face he has so satisfied with what he did!  He makes me sick!!!]

And this is a comment from an article about Kelli Stapleton, who tried to kill both herself and her autistic daughter back in December.

[Text reads:  "People shouldn't judge this woman unless you've been in her shoes. Anyone who has dealt with a family member who has the same level of mental/emotional issues as this daughter can understand how the day-in/day-out stress simply wears you down. And there is no recourse in our systems for taking care of these people, the social safety nets have all been eliminated in cost-savings. It's a mess."]

See the difference?  It astounds me.

There is no denying that we need better services.  We need insurance coverage for AAC equipment, for programs that actually help disabled people, for personal care assistants.  We need programs that cater to disabled people's strengths, while helping them through their weaknesses.  We need sensory rooms galore.  We need an education system that's flexible and doesn't focus on meaningless test scores.  We need programs and schools and activities that are actually inclusive and welcoming toward people with disabilities.  We need treatments - not cures - that will help disabled people manage the aspects of their disabilities that do cause suffering or otherwise interfere with living a full and happy life.  Those are the kind of services we need and I am the first to say that the amount of services we have right now is sadly lacking.

But the need for better services does not, and will never justify wanting to hurt your child.  Wanting to kill your child.

Services and cures - they're two separate issues, they're completely unrelated.  Don't force them together.  Treatment is not cure, and some people may seek treatment voluntarily to better their lives.  That's okay. But when you're forcing treatment onto a child or someone can't communicate enough to consent, that's a problem.  Especially when that "treatment" is dangerous and done in the name of "normalizing" your child.

I'm tired of hearing about murders or potential murders.  I'm tired of murders being justified.  I'm so, so tired.  Please, make it stop.  My life is not your tragedy and neither are the lives of my friends - "high" functioning, "low" functioning, whatever.  Is it so damned impossible to comprehend that we might be happy with our lives?

I am happy.  We need more services.  It is not okay to hurt your children.  There are aspects of disability that interfere with living a full life.  We need acceptance.  These statements are not mutually exclusive.  Stop acting like they are.

Disability should not obstruct justice.  Disability is not your get of jail free card.  Period.

Read More

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.

Read More

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.

Read More

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.

Read More

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.

Read More

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.  

Read More