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Sunday, April 1, 2018

Farewell, Stephen Hawking. Take Your Chair With You!

The death of Stephen Hawking is a great loss for the scientific community, the disability community, and the whole world…or the whole universe, if we are thinking like Professor Hawking. As is usual when a disabled person dies, there has been a lot of chatter about how Hawking is now “free” from his body, his wheelchair, and his communication device. The trite, stereotyped cartoons circulating show him striding away from the power chair into the waiting stars, and it is implied that a mind “trapped” in a limited body has been released to achieve true greatness. But what if I told you when I picture Hawking floating freely through the cosmos, I picture him zooming by in his chair, in a place where it truly doesn’t matter what you use to get around, because everything is 100% accessible?

As someone who has grown up using a power wheelchair, the cartoons depicting Hawking sauntering into the cosmos in a suddenly ambulatory body make me uncomfortable in ways that are difficult to articulate. But after reflecting over the past day, I can say that some of my discomfort can be summarized like this: Why does society assume that true peace and freedom can’t exist in a body like mine? Of course, if there is an afterlife, which I believe there is, we may well have no bodies at all. However, whenever the great beyond is depicted, disabled bodies are erased. Essentially, I am erased, because existing like me has been deemed incompatible with the joy of a Heavenly reward. Ouch.

Stephen Hawking was one of the greatest thinkers the world has ever known. His talent is ordinarily contrasted with his disabled body. The world saw his thoughts as brilliant, his body as broken. But the disabled body (and the disabled mind, for the matter), is not without its own magic. Those of us with disabled bodyminds live in bodies and minds that must adapt and innovate and grow every day around both medical realities and deep social prejudices that we ourselves must unlearn. The very act of taking up space on the planet without apology is one of resistance. That, to me, is pretty damn brilliant. Thus, Hawking’s talent and his disabled body need not be seen as a contradiction. Hawking made his mark not in spite of a disabled body, but in harmony with it, and when we erase that, we feed into the lie that disability and greatness cannot coexist. That lie has tragic consequences that seep into every aspect of society.

That said, “greatness” need not look like a scientific genius. Our world, especially in these challenging times, demands that we recognize greatness in all of its forms and acknowledge that greatness manifests itself as much in a man who uncovers the secrets of the galaxy as it does in the person who shares a kind word with a stranger. When I contributed to a video this summer explaining the importance of Medicaid in my life as a woman with cerebral palsy, an Internet troll challenged my very right to exist because I need help. She asked “in what way I was useful” since I need physical help “just to do basic stuff.” When another person called out her ableism, the troll replied that “unless you’re Stephen Hawking,” she just wasn’t seeing my usefulness.  While Stephen Hawking is one of the standard answers nearly anyone can give when asked to name a disabled person, remember that for every Hawking there are millions of other disabled folks who may never become world renowned professors or famous writers or movie stars…and they shouldn’t have to in order to be treated as people of value.

That troll revealed an ugly sentiment that bubbles beneath the polite veneer of society: too many nondisabled people still believe that disabled folks need to earn the right to exist. The truth is, whether one has unlocked the galaxies or merely spent the day eating a bag of chips, disabled folks deserve life and a world that makes room for us simply because we are human beings.

Don’t celebrate Hawking as an example of what humankind can do when we “overcome disability.” Celebrate him as a testament to what we can do when each and every bodymind in the universe is accommodated and supported. Stephen Hawking did not find true greatness when he “broke free” of his disabled body. He was true greatness in a disabled body. That shouldn’t be so hard for the universe to believe.

Friday, March 2, 2018

Disability Day of Mourning 2018: University of Illinois at Urbana-Champaign

Yesterday at the University of Illinois at Urbana-Champaign, we commemorated Disability Day of Mourning to honor people with disabilities murdered by caregivers and parents. We sent the message that disabled lives are valuable and worthy. We remembered and we challenged media coverage that justifies violence against people with disabilities. 

For more information on how to talk about the murder of disabled folks by parents or caregivers (filicide), see this toolkit by the Autistic Self Advocacy Network: ASAN Anti Filicide Toolkit

You can also see a copy of a report by David M. Perry and the Ruderman Family Foundation speaking out against the violence: Ruderman Family Foundation Report

Below are my remarks, delivered March 1, 2018 at the University of Illinois:

My name is Kathleen Downes and I’m an MSW student working with the Social Justice and Leadership Education Office in University Housing. I am also a disabled woman, sitting before you to speak words I wish weren’t necessary. But sadly, they are. Hundreds of people with disabilities have been snatched from the world by family members and caregivers who murdered them. We’re here tonight to remember the lost and to tell the world we will not stand for such violence. Too often, the media frames violence against us as justifiable, understandable, and even merciful. Doing so devalues disabled lives and promotes the dangerous idea that we don’t matter.  

I’m thinking of Tracy Latimer, a 12-year-old girl with cerebral palsy murdered when her father filled the car with carbon monoxide. Newspapers focused on the medical aspects of her life and called for “compassion” towards her father, based on the ableist assumption that her life had no quality. But where is the compassion for Tracy? At the end of her life, she was reduced to a burden, her personhood overshadowed by assumptions and preconceived notions. Let’s not forget that Tracy was a human being. I wonder what her favorite food was. What songs did she like? Did she love the smell of rain, like me?  In this moment, let’s remember Tracy and instead, have compassion for a child whose life was stolen under the false cloak of mercy.

I’m thinking of Olivia, Max, and Ben Clarence, three children with spinal muscular atrophy murdered by their mother. Three human beings with disabilities not so different than mine. Three human beings with gifts to give and dreams to pursue. Dreams they will never reach, because they, too, were stolen. If given the opportunity, they may have gone to college and experienced the joy of zipping around a lively campus. They may have had first dates. They may have had children of their own. They may have had so many things, had the one trusted to care for them not chosen to rob them of a chance. I can’t help but think that they each deserved to find a place in the vibrant disabled community, a community that every day provides solidarity and strength for me. A community that has taught me that I have the right to be here, despite the inaccessible buildings, cruel cyber comments, and discriminatory attitudes that try to argue otherwise. Most of all, I can’t help but think that Olivia, Max, and Ben could have been my friends.

It is terrifying as a young disabled person to consider that easily, quickly in another circumstance, I could become a name on that list. It’s terrifying that when you’re disabled, growing up includes learning that you are more likely than others to experience violence simply because you exist. I was reminded just how real and dangerous ableism is last summer when I was featured in a short video speaking about the services that help me bathe, dress, eat, and use the bathroom. Hundreds of people attacked my very right to “be” in the world. One commenter said, “I’d want them to give me a lethal injection if I were ‘wheelchair bound.’” Another said that because I require physical assistance, I have need but no contributions. A third asked in what way I was useful, if I need physical help to do basic stuff. It’s attitudes like these that perpetuate the cycle of violence and cause us to be treated as disposable in a system that supposedly promises justice for all. We can change the story, but it will take all of us to say loudly and clearly, “No more names.”

I’ll close by speaking directly to Tracy, to Max, Ben, Olivia, Alex, Julie, Hayden, London, Justin, Fletcher, and the hundreds of others whose memories we hold in our hearts… I’ve said before that I do not know each of your faces, yet I do. Because they look just like me and just like so many of the wonderful people who make the world a better, more beautiful place. You were worthy of life. You mattered and you always will. I love you so.

[End of remarks]

You can also see a copy of the slideshow tribute to the victims (contains alt text for screenreaders): DDOM Slideshow

"Your heart is a muscle the size of your fist. Keep loving, keep fighting."
-Dalia Shevin

           [Image: Kathleen seated in a wheelchair speaking into microphone
wearing a black shirt with a stylized power fist that has a wheelchair symbol rising above it, designed by Cole Anderson. Behind her is a slide that honors "Those Whose Names We Do Not Know" with an image of colored, stylized candles.]

[Image: Kathleen with Lauren Bryant, smiling, both in wheelchairs. Taylor Morefield stands on pink crutches between them, smiling. All were speakers at Disability Day of Mourning]

Wednesday, February 21, 2018

When You Say Ableism Isn't Real

I originally prepared this poem for a school project called Tunnel of Oppression. That project is on hold right now, but the message is still important, especially as we face the threat of attacks on the Americans with Disabilities Act.  Contact your Senator by phone, text, mail, or social media. Let them know that HR 620 makes it difficult to enforce our civil rights. They can be reached at 202-224-3121 or on the Senate website And don't let anyone say, not even for a moment, that ableism isn't real. It's a scary time to be disabled in America, but we will rise.

"I adamantly protest the richest culture in the history of
the world which still incarcerates millions of humans with
and without disabilities in barbaric institutions,
backrooms and worse, windowless cells of oppressive
perceptions, for the lack of the most elementary
empowerment supports.

I call for solidarity among all who love justice, all who
love life, to create a revolution that will empower every
single human being to govern his or her life, to govern the
society and to be fully productive of life quality for self
and for all."

-Justin Dart

When You Say Ableism Isn't Real
By Kathleen Downes

You think ableism isn’t real? That must be charming, to be so privileged you can overlook it all

What if I told you it was common for people to say “I’d rather be dead than disabled”?
That the media constantly tells us that disabled means ugly, tragic, and helpless?
That looking for a bathroom accessible to us is a scavenger hunt?

If only a damn place to pee were as easy to find
As a thousand stale wheelchair jokes and ignorant stereotypes.

What if I told you we grow up knowing that being disabled too often means being poor?
That having more than $2000 could mean losing the care we need to get out of bed?
That a small change in health policy could land us in a nursing home?

Could you ignore ableism then?

If only a damn job were as easy to find
As a hundred broken elevators and staring strangers.

What if I told you when you say “as long as my baby’s healthy”, I hear “Hope it’s not like you?”
That people have asked what my purpose is, if I need help with so many things?
That I can’t go to the doctor without wondering if I’ll be treated like a child?

If only a damn ramp were as easy to find
As a million rude questions about my body.

I could tell you so many more things
But we would be here all night.

So, go ahead. Tell me again that ableism isn’t real.

[Captioned video below]

[Video frame shows Kathleen, seated in a wheelchair, reading her poem aloud. She wears a blue dress shirt with white dots and glasses. Her hair is in a ponytail].