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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]

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