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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].

Friday, November 24, 2017

Cripples at Christmas 2017

 The 2017 edition of my annual Christmas cartoons. Image descriptions are below each cartoon. Have a great holiday season and don't forget to dig your wheelchair using friends out of the mounds of snow that will inevitably be dumped on the curb cut. 

       Santa proudly paid the bail when the misfit toys were arrested for protesting Medicaid cuts. A group of misfit toys including the spotted elephant, square-wheeled train, and Charlie in the box are holding picket signs that say #SaveMedicaid. The spotted elephant is saying “I’ve never been prouder to be on the naughty list.”

1          Concerned about his poor spatial skills, the sheep led the shepherd with CP to Bethlehem.
Three sheep are leading a shepherd in a wheelchair who is holding a staff. One sheep is saying “So we’re not traditional. Who cares?”

1        Elf in the Overpriced Posture Support Chair lacked the same ring as Elf on the Shelf. Two ambulatory elves stand on a shelf. Below them, an elf sits in a chair with handles and a backrest. He is saying “Oh well. They say the shelf is overrated anyway.”

1      The CPer’s mishap with Dragon Naturally Speaking* accidentally landed her on the naughty list.
A stick figure in a wheelchair is saying “I swear Santa; I meant to type Easy Bake Oven, not Easy B*tch Oven.” Santa replies, “That is quite the typo!”

*Dragon is a speech to text software to facilitate hands free typing.

1       The athletes in the adapted reindeer games were sick of being treated like “inspiration porn.” A reindeer wearing dark glasses is saying “My story’s not even particularly touching. I was blinded by a flying gumdrop!” Another reindeer, with slightly askew eyes looking in different directions is saying “Preach brother!” A nearby sign reads SPECIAL REINDEER SHOW COURAGE BY EXISTING.”

   The two guests with CP* found each other at the interfaith holiday celebration. One stick figure in a wheelchair is saying “No one ever asks me to light the Figgie Pudding. Something about motor skills.” Another stick figure in a wheelchair is saying “Same with me and the menorah. Same sh*t, different holiday.”

*CP= cerebral palsy

1   The wheelie could not understand why everyone hoped he wasn’t their Secret Santa. A stick figure in a wheelchair with a Santa hat is saying “I thought the jumbo box of healthcare gloves was a cool gift!” A walking stick figure with a Santa hat is saying “Don’t take this the wrong way, but most people want chocolate or something.”

      Eager to jump on the ugly sweater party trend, the rehab catalog added some overpriced magnetic zippers to a sweater and declared it “special”.

One sweater is labeled UGLY- $20.00. Another is labeled SPECIAL AND UGLY- $200.00. Bottom text says “Sweaters that make you say ho ho ho. Prices that make you say ho ho holy sh*t!”

1   The disabled gingerbread man could not sleep in heavenly peace because he had no PA* to put him in bed.
A gingerbread man with candy cane style walking canes is saying “Sleep in heavenly peace? I wish I could sleep at all!”

*PA= personal assistant

1     Riding the North Pole Paratransit bus was known among the regulars as “Jingle Hell.” A stick figure in a wheelchair wearing a Santa hat is saying “Still waiting… maybe I’ll get to the Christmas party by Easter.”

       The Kit Kat bar shortage greatly impacted the quest for accessible housing in the gingerbread village.
A gingerbread man stands beside a gingerbread house and a nearby sign reads: RAMP CONSTRUCTION CURRENTLY ON HOLD. The gingerbread man is saying “Kit Kats make such good ramps!”

   We won’t go until we get some,” they said. Then Access-A-Ride showed up an hour early.
A stick figure in a wheelchair is singing, “We all want some Figgie pudding…” and stops abruptly states: “Oh, never mind! Gotta go before the bus leaves!” Another wheelie is saying “Damn it. They’re usually late!”