OPINION: Disability Day Of Mourning and 1,027 Reasons To Be Angry
Donnie TC Denome | March 2, 2018, 12:37 a.m.
CW: Ableism, saneism, hate crimes, murder
This article has been adapted from a speech the author gave at the 7C Disability Day of Mourning Vigil on March 1.
Last night, I held a vigil in Benson Auditorium at Pitzer College. It was sparsely populated but the attendees were passionate about the subject matter. We gave speeches, recited poetry, and listened to a recitation of the names of the dead.
I held the vigil for Disability Day of Mourning, an event organized by the Autistic Self-Advocacy Network to remember and honor disabled people lost to filicide, or murder by a family member. Part of the vigil included the reading of a list ASAN has collected of over 1,000 disabled victims of filicide. The list stretches back to 1978, although most of the victims on it were killed in the last decade.
One thousand names. One thousand people with lives, identities, talents, friends, families, and communities. One thousand people whose lives were absolutely worthwhile, yet taken too soon.
One thousand people whose deaths are too often portrayed as “a mercy killing” and “understandable.” One thousand people whose killers are too often portrayed as “driven to murder” by their victim’s disability or an example of how “all parents of [disabled] children” sometimes feel.
One thousand reasons why our views on disability, neurodiversity, and inclusion must change radically and soon.
Disabled people are not burdens. We are individuals with lives and personalities. We can’t do everything that non-disabled people can do, but that does not make our lives worthless. We may never function with the same level of independence that non-disabled people will, but we still can function.
We still have autonomy over our bodies, minds, and decisions. To remove that from us (through physical force, confinement, or legal terms) is to treat us as less than human.
Right now, our president is talking about how we should reopen mental institutions to prevent mass shootings. Apparently, he thinks denying disabled people of civil rights and liberties is not too high a price to pay, despite experts saying clearly that it won’t work.
Or, consider the fact that in 1927, the Supreme Court ruled in Buck v. Bell that it was legal to sterilize disabled people (especially disabled people who could become pregnant). The majority opinion, delivered by Oliver Holmes, Jr. included the phrase “three generations of imbeciles are enough,” in reference to the petitioner Carrie Buck, her mother, and her daughter, despite the fact there is evidence none of the Bucks were disabled at all. The case has never been overturned.
HR 620, a bill that would remove parts of the Americans with Disabilities Act and make it harder for disabled people to sue businesses that don’t comply with accessibility guidelines, recently passed through the House of Representatives.
It now is apparent that neither the executive branch, the judicial branch, nor the legislative branch of the federal government will stand up for the rights of disabled people.
Disabled people cannot rely on the government to protect us and, apparently, we can’t rely on our family members either. Our lives hang tenuously in the balance, dependent on the whims of our politicians and, sometimes, caretakers.
When our government approves work requirements and discusses lifetime caps for Medicaid, it targets the most vulnerable members of low-income and disabled populations. These requirements and caps, which put demands on disabled people who most likely cannot fill them and cut the amount of care these people are able to receive, will kill people if they are carried out throughout the country.
This is the reality we live with.
If my insurance policy had a lifetime cap, I would have broken it within my first year — or possibly month — of life. I had $500,000 of brain surgery, monitoring, and post-surgical care before I was two weeks old. Without that care, I would be dead right now.
Even today, my medications cost $600 a month before insurance. After insurance, they cost $30. I need those medications to keep me stable enough to go to school, hold a job, and make a future for myself.
Because of those medications, I can have a socially approved “future.” There are many disabled people who will never be able to go to college, hold down a job, live without constant care, or meet other social benchmarks.
Disabled people and our lives have intrinsic value no matter what we can or can’t accomplish. We are family members, partners, students, teachers, workers, parents, children, friends. We add knowledge, love, compassion, skills, and passion to this world.
Even if we were none of these things, we are autonomous human beings deserving of life.
When disabled people are deprived of our rights, we are denied our humanity. We are too often treated like permanent children: growing in body and age but never maturing to the point where we can speak for ourselves.
But we can, and do, speak for ourselves. We are screaming, too often, for our concerns to be taken seriously but others around us do not pay attention.
The motto of the Autistic Self-Advocacy Network, a group by and for autistic people, is “Nothing About Us Without Us.” On their position statements webpage, ASAN explains their motto: “We believe that self-advocacy is essential to this process and that there must be meaningful involvement of Autistic individuals in making policy at all levels.”
Disabled people deserve to be involved in our own care and policy surrounding us no matter what. It is futile to pretend the concerns of disabled people will go away if others ignore them.
Disabled people have always existed and will always exist. Right now, our lives and futures hang in the balance.
Nothing about us without us!
Donnie TC Denome PZ ’20 is a public health major with research interests in the intersection of disability and queerness. They have a fat, crotchety cat named Butterscotch.