“Do you really want a bunch of cripples to save you, again?”
My friend Dawn Gibson wrote this in a recent Facebook post about being a chronic illness and disabled activist in the age of the coronavirus outbreak, or COVID-19. She was preparing to help lead a community-support #CreakyChats Twitter chat and writing an article about the lasting complications of having survived swine flu — both at the same time.
I can’t stop thinking about her sentence. I can’t. It grabbed me hard, in the gut, and wouldn’t let go.
Before I keep going, let me say that the word ‘cripple’ is an ableist slur. Many of us disabled activists choose to reclaim that word from time to time to illustrate the labor we do as people who regularly fight society’s barriers to our full participation in the world.
I don’t recommend using the word ‘cripple’ if you aren’t disabled.
The Thankless Work of Disability Activism
The work of disability activism is one of the most thankless jobs I can imagine. On top of literally fighting to survive and for access to places and spaces, our work so often unpaid, done out of desperation and need. It is full of emotional labor and righteous rage. And yet our work represents a cornerstone of the universality of accessibility. A cornerstone of society’s functioning.
- Ever heard of the curb cut effect?
- Did you realize eyeglasses are a tool for accessibility?
- Ever marvel at how easy it is to understand the news in a loud bar because of closed captioning or subtitles?
We ALL benefit from tools and designs that were made for and/or by disabled people.
So why do we ‘cripples’ continue to be an afterthought? Why does the general public continue to rely on the hard work of disabled people in the midst of public crises to bring us closer to a reality of fairness in public messaging about whose lives are valued?
“Do you really want a bunch of cripples to save you, again?”
Disability in the Wake of the Coronavirus Outbreak
Back to COVID-19. Oh, yeah, that’s what this post is ultimately in response to.
We disabled activists know no one is going to include us equitably in messaging about this latest public health threat. We have no historical evidence of inclusion, so why should we expect it to start now?
Haven’t noticed what I mean?
Well, it’s been a few months and by this point you’ve likely heard or read these kinds of phrases that have become the norm in reporting and announcements: “Don’t worry, COVID-19 will only seriously impact people over 65 or with underlying health conditions.”
As my Twitter acquaintance Alexandra Brodsky (@azbrodsky) tweeted recently: “A friendly reminder: People who will be high-risk patients if we get coronavirus can hear you when you reassure everyone we’re the only ones who might die.”
We disabled activists take it on ourselves to find, create, and broadcast information to our own communities of medically high-risk folks. We don’t do it because we want to, or because we enjoy it, or because we’re getting paid for it. We do it because we don’t want to die.
Hardly ever are we paid for the emotional, traumatic labor of doing what public officials refuse to do: Acknowledge our humanity.
During the 2019 PG&E electricity cutoffs in the Bay Area, near where I live, a common theme arose from the disabled community by necessity. That theme was mutual aid, under the premise that no one else is going to watch out for us, so we have no choice but to fend for ourselves and each other. Barely funded non-profits rallied with small donations to get generators to people who rely on medical oxygen or electric beds to live. People living in poverty came up with plans to help each other survive without power.
This kind of cobbled-together care should NOT be the norm. I’m sharing it because it’s an example that points to the larger issue that disabled people (which includes people living with chronic illnesses and immune-related conditions) are simply left out of planning for disasters and significant health threats. Our lives are seen as expendable. Plans and public messaging are drafted with only healthy people in mind as the audience, as if no one listening will be “those in poor health — and if they are, well, someone else will handle that, and it’s OK if they die.”
The Accidental Weaponizing of Ableism
What is most damaging is not the harm that comes from simply being left out of messaging in a humane manner, it’s the offshoot from that messaging: the weaponization of ableism that comes with it from average well-meaning citizens. If a public message says we should be fine, e.g., “Don’t panic, just wash your hands, and only the sick will die anyway,” that message will be grabbed with both hands by non-disabled, healthy people and used to remind those of us who are sick to not panic, wash our hands, and, oh, we might be the ones to die.
But stop worrying!
So many of us in the chronic disease community have been gaslighted and able-splained in recent weeks as we share legitimate concerns over the lack of information and public response to help prevent the spread of COVID-19.
The absolute exhaustion that comes with this work is nothing I can compare to. But we who do it feel that no other options exist. If we don’t perform the labor of finding and sharing information for our community, then who will?
We remain invisible even when our lives are most at risk for complications and death in the wake of a growing pandemic (even though it hasn’t been declared as such as of this writing). There’s a certain pressure to keep going once you start finding information, realizing that if you don’t share it no one else will.
I myself am self-quarantined to protect my life. But I’m still losing sleep over worry about others in my community and about the future.
Our Obligation to Help
Which brings me to this. This idea that we activists perform well under stress, a topic broiling in my head as I think, “Wow, I am not practicing good self-care because I’ve been working so hard to disseminate quality information on behalf of my immunocompromised community.” For me, broadcasting that information feels necessary, and doing it isn’t a choice. I know I’m good at it, I know I need to do it, and I like that it gives me some level of feeling of control over a seemingly out-of-control situation. But I don’t like doing it. I’m filled with righteous anger that I have to do this work because it feels like we have no other option if we truly want to survive.
In the past week, here’s what I’ve been up to for the sake of my community that receives no support, validation, inclusion, or preparedness specifics when it comes to disasters.
- Emailed countless media contacts requesting coverage to include immunosuppressed/immunocompromised communities’ unique needs
- Wrote suggested language about public responsibility to prevent COVID-19 spread (my mayor’s office adopted the language!)
- Emailed with my Congresswoman about inclusive messaging
- Connected with my state’s pharmacy board and department of public health to streamline messaging
- Engaged in a CreakyJoints-led Twitter chat to address concerns in the chronic disease community
- Researched, gathered, and shared reputable information across multiple social media channels (a continuous process)
- Provided space for people to talk about their fears without fear of being told to quit worrying
Disabled people are always an afterthought, never built into the messaging of a pandemic. Actually, we’re arguably built out of the messaging and used specifically as examples for why healthy people shouldn’t be concerned.
Phrased differently, chronically ill people are marketed as everything someone does not want to be during a pandemic.
Why? Because our lives literally aren’t considered worth protecting via public responsibility. It’s “every man for himself.” (Agh, I hate that gendered cliché.)
Public health messaging built around who you don’t want to be during a pandemic gives healthy, less-impacted people an easy excuse to not know or care because they aren’t impacted.
So now that you know, will you start caring?
Think before you post thoughtless comparisons of coronavirus to the flu. Ask the medically vulnerable people in your life what you can do to help them — a small grocery store errand goes a long way. Wash your hands often and thoroughly. This list can go on and on, but you get my point. See us. Help us. Because you know we would do the same for you.
For ongoing coronavirus coverage and to be part of our community conversation about this, visit creakyjoints.org/coronavirus.
