Actually, the Dead Do Care
What Mourning the Disabled Dead Can Tell the Living
There are two important things we need to do to fight back against the threats that disabled people are currently facing. One is to realize that people have been where we’re at before. In The Conversation this week, I wrote about America 100 years ago, as a cloudy mirror of our own moment.
At the same time, my friend and colleague, the phenomenal disability writer and journalist John Loeppky sent me a powerful piece about what it looks like to go beyond knowing a history to caring for that history and the people who lived it. The disabled dead are the ones who surround and fill these posts on (Un)Hidden. Even when they’re not named, they’re always here, and as John writes below, they care if we care to listen to them.
I hope you’ll read this powerful piece and share it widely.
Actually, the Dead Do Care
What Mourning the Disabled Dead Can Tell the Living
by John Loeppky
It’s a common adage that the dead don’t care. It’s why you can’t be charged with libel or slander for slagging off those who have kicked the bucket, sloughed off this mortal coil, or taken part in whatever other shaky metaphor you prefer so as to still feel as if death happens to other people. To hear Thomas Lynch tell it, via a 1994 edition of the London Review of Books, it is all quite ordinary, this dying thing:
“They die around the clock here, without apparent preference for a day of the week, month of the year; there is no clear favourite in the way of season. Nor does the alignment of the stars, fullness of moon, or liturgical calendar have very much to do with it. The whereabouts are neither here nor there. They go off upright or horizontally, in Chevrolets and nursing homes, in bathtubs, on the interstates, in ERs, ORs, BMWs. And while it may be that we assign more equipment or more importance to deaths that create themselves in places marked by initials – ICU being somehow better than Greenbriar Convalescent Home – it is also true that the dead don’t care.”
Except, I think the dead do care. I think the disabled dead, in particular, care. I don’t need to believe in a God, or be a card-carrying member of the Spastics Society (the former name of Scope, Britain’s largest disability-focused non-profit) to understand that the dead do care.
Plus, in March, I can’t help but feel like I (and they) care a little more. In July there’s disability pride month, October is dedicated to national disability employment awareness, but in March we get to mark the dead with more than a tombstone.
March 1 each year is designated by the Autism Self Advocacy Network as Disability Day of Mourning. It is a solemn occasion to grieve and remember the victims of filicide, those who have died at the hands of family and caregivers simply because they dared to be disabled. Too often, these murders—let’s call them what they are— have been taken up by the non-disabled public and press as a cause for pity and spectacle.
For many, thanks to the ableism rampant not only in our history but how we teach each other humanity, there is a perverse sense of rationalization, spectacle, and forgiveness that gets publicized and validated. “Oh, it must be so dire, that being crippled thing” you can almost hear screaming at you from the pages of the news or obituary section. As if brain damage or a missing limb is equivalent to a valid vigilante death warrant.
As I write this, the latest post from Disability Day of Mourning, a site where they maintain a record of these cases, is from January 23, describing a teenager who died, her body bruised and battered, a cage found in her home, crafted by her family.
The one before that, a senior in Illinois who it appears was shot by her husband because her dementia made her “irritable.”
The one before that, an autistic five year old, killed in a family suicide, poisoned. Blamed, it seems in part, for her family’s struggles.
The index stretches back to the 1980s. Perhaps the darkest part of projects like this is that it’s impossible to catalogue and describe the horrors happening to everyone. For every one name, I’m guessing ten are missing, never known about, forgotten, lost to time.
But they’re not lost to time, not really. Even when we don’t know their names, we can feel their presence, if only because the systems of oppression that so often cause their (our) deaths are ones we know well: medical neglect, violent policing, an inattentive judicial system, to name a few. We may be alive, but the shape of that death and that grief often seems remarkably familiar.
It can be really tempting, at the same time, to look at the dizzying changes being made by the American government as indicative of a public that isn’t aware of our disabled dead. USAID cuts will kill people, backsliding on medical assistance in dying legislation worldwide will cost disabled people their lives, all while it’s hard not to see the defunding of the NIH as pre-writing death certificates for some folks in the not-so-distant future.
Perhaps that apathy, real or perceived, is because the way we talk and teach about disabled people dying is, to use the technical term, screwed right up. This isn’t just a COVID-19-era phenomenon, where deaths of those with “pre-existing conditions” were washed away in the public health conversation. It’s part of how we view the ways that disabled people live. When I’m asked why disabled people haven’t achieved a particular accomplishment, I tend to reply, “Because not that long ago you would have left us dead or on someone’s doorstep.”
And that’s why we have to look at these places, including institutions, prisons, the health system, and schools, where death isn’t just a natural consequence of being alive as a disabled person, it’s a hurried along prospect—whether that be thanks to family, friends, governments, co-workers, psychiatrists, or others—because disabled lives are so often seen as not worth living. How many times have you seen an in-memoriam that says, “We hope he’s up there, as in life, slamming into everything that isn’t bolted down in his wheelchair?” Never. Instead we get wording that death frees someone from their wheelchair or “cures: them of their autism. Too often, we are not given the dignity of being our full selves in death after already being denied it when our hearts were still beating.
Perhaps the scariest part of all of this is that institutions aren’t just these state-run horror shows, just the same as they aren’t the Ugly Laws or the rampant imprisonment of disabled people, (or the fact that, in some places, it’s standard procedure when you call 911 and mention someone is autistic for the operator to ask if they are violent) it’s that these institutional processes—the types of ones that lead to gunshots and makeshift cages in spaces that are meant for love and care—are normalized in so many places and spaces, as much in the digital realm as the physical world.
I’d argue that they’re normalized because disability might be feared more than death. Losing function, to some people, is more identity-stripping than just being put straight in the grave. There is this tendency in disability advocacy circles to remind people that disability comes for everyone, like the ghost of that particular threat is going to create meaningful action. I think we need to be forceful and kind when it comes to pointing out the reasons so many disabled people die each year in ways that aren’t natural, aren’t normal, that we should care deeply about and respond to with sincere effort.
I do agree with people that losing function—even if you’re already disabled—can hamper your identity. We’ll leave arguments about various models of disability for another day, but the point is: we don’t give each other our ourselves enough grace when it comes to disabling symptoms. To me, blaming society’s ableism is too simple just the same as blaming an overly medicalized social hierarchy is as well. The dead teach us that, if we’re willing to listen.
Part of that kindness, as simple as it may seem, is to read the names. Not all of them, mind you, your mental health is important, but a few. Read some in your country or your state, read some in the era you were born, or that originate from the country your family originates from. Remember our dead, because I think the dead do care. And we should care about them more than we currently do.