Sunday, March 30, 2014

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.

Sunday, March 2, 2014

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

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.