OPINION: Embracing grief, anger and hope on Disability Day of Mourning

Graphic by Jenny Park

Content Warning: Ableism, Death

One thousand, two hundred and eleven names.

One thousand, two hundred and eleven bodies.

One thousand, two hundred and eleven lives cut short.

One thousand, two hundred and eleven deaths by neglect and cases of abuse of dependent adults and children swept under the rug and excused.

One thousand, two hundred and eleven disabled and chronically ill people who became statistics at the violent hands of others before their time — and then largely forgotten.

Today, March 1, is Disability Day of Mourning. I have spent the last month planning a vigil for the 1,211 disabled people killed by their families and caregivers. The number comes from the list of names released by the Autistic Self-Advocacy Network, who have been tracking cases since 2014, although the list of deaths stretches back to the 1970s.

Compared to the turnout last year, the response to my call for organizing help was amazing. While I’ve had little faith in disability allies at the 5Cs for a while now, individual contributions ranged from financial support to offers to distribute flyers to someone immediately responding when I asked for Spanish translation help with advertising.

Still, the sheer thought of holding a vigil for more than 1,200 dead disabled people sends me into an even deeper depression than I usually inhabit. The sheer magnitude of the job I had foisted on myself hit me when a friend asked “Why are you doing this?”

“Because I wanted to,” I said, not knowing why I exactly wanted to. “Because it’s important.”

It’s so important that, at a time when abled playwrights and directors depict disabled children as puppets rather than even consider casting a disabled actor and President Donald Trump’s government proposes changes that would essentially bar disabled immigrants with significant support needs from seeking citizenship, disabled people have continued community support.

That begins with prosecuting and convicting people who kill disabled people, not excusing the killings.

Disabled people face a multitude of problems beyond killings of members of our community. It’s still legal to pay disabled people subminimum wage, down to a pennies an hour, in sheltered workshops that teach no real usable skills.

Medicare, health insurance for elderly and disabled people, does not typically pay for the long-term supports and services disabled people need to stay in our communities.

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Twenty years after Olmstead v. L.C., a Supreme Court case that ruled that disabled people have the right to live in our communities whenever possible, rather than in separated and segregated institutions, true integration and home-and-community-based services are still not the reality.

Gradual electronic decelerators are still used to shock developmentally disabled children into compliance — and despite the Food and Drug Administration moving several times to ban them, they still exist and are used.

Most of all, when disabled people try to fight against these injustices, we are too often silenced, shushed, accused of being abled outside agitators or told we’re too disabled to know what’s good for us.

We’ve been at a tipping point for years now, where the killings of disabled people is the most heinous, but certainly not the only, symptom of the problem. In the fray of politics, the killings, the loss of rights, the torture goes unnoticed and unrecognized.

I’ve told so many people about the Day of Mourning over the last few weeks and I hear nearly the same response from all of them: How can we live in a world where that is necessary?

To quote Alice Wong, a disabled self-advocate and the founder of the Disability Visibility Project, “[Because] our lives are so easily forgotten, ignored and excluded … when we are alive, we have to fight for recognition and in death our lives are cast in stereotypes and clichés that robs us of our innate humanity.”

Wong highlights how disabled lives aren’t valued and disabled deaths aren’t mourned as tragedies by people outside of our communities. When disabled people are viewed through the lens of stereotypes and low expectations, when we are perpetually seen as useless and drains on society, when we are only mentioned positively as inspiration porn, we cease to be unique humans and start to be merely statistics and faceless bodies.

And it’s not just the killings by family.

In El Dorado Hills, California, Max Benson, a 13-year-old autistic student died after being placed in restraints at the Guiding Hands School. A preliminary investigation later found that the school had violated procedure.

I have friends who knew Benson’s family. I know people, disabled and non-disabled alike, who were deeply affected by his death.

Benson isn’t on the official Day of Mourning list of names. He’s not listed on the Day of Mourning website.

I think he should be. Benson was supposed to be kept safe by the staff at Guiding Hands. Their violation of procedure, and neglect failed him and, ultimately, killed him. Benson died from the action and inaction of his caregivers.

If we put Benson’s name on the list, though, I fear for how many more we would have to add.

I am despairing. I am angry. I ache and rage for the 1,211 people listed on the Day of Mourning website and all the many more like Benson who aren’t listed because they don’t meet the criteria.

But I am also hopeful. The question I got right after “how can we live in a world where that is necessary?” almost every time was “how can I help?”

People volunteered money, time, art supplies, advertising help, translation assistance and emotional support. I asked for basic help organizing and received more offers than I could have imagined.

I have seen how much people care. I have seen how much people want to help, even if they don’t have a direct connection to disability. I have seen how wonderful the community and our allies can be.

We will hold strong together. We will fight for our rights. We will create a world where there truly is “Nothing About Us, Without Us.”

The 2019 Claremont Disability Day of Mourning Vigil will be held at the Pitzer Gold Student Center multipurpose room from 7 to 8:30 p.m. March 1.

Donnie TC Denome PZ ’20, CG ’21 is a BA/MPH candidate from Sunnyvale, California. Their family’s six cats have an Instagram account @grittythekitty.

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