We live knowing that society would prefer if we were dead. As a queer, disabled woman of color and a White, disabled woman with wealth privilege, we have different lived experiences of privilege and oppression. As disabled women, though, we are both often seen as a burden to those around us. When we say this, non-disabled people often think it’s hyperbole. It is not.
We are reminded of this in subtle ways on a daily basis. From public policy to the health-care system to the media — as well as everyday interactions — we are told that our lives are not valuable in our society. These often come as quiet messages: inaccessible physical spaces, employers denying accommodations, offhand comments that we don’t “look” or “act” disabled.
Like so many others, we thought the pandemic was going to be a short-term situation when it began. As time went on, it became apparent that we were in this for the long term — and that despite covid-19 being deadly to our disabled and chronically ill community, we would mostly be left to fight on our own. For the past two years, it has been difficult to watch as friends and those around us have gone on with their daily lives as if the pandemic has ended. It is far from over for us and our community. For Mary, for example, being immunocompromised has meant staying home other than going to doctor’s appointments.
But in recent weeks, it’s only gotten worse: Intrinsically knowing that society does not value us and listening to people in power state it are two different things. Earlier this month, Centers for Disease Control and Prevention Director Rochelle Walensky said the quiet part out loud.
She appeared on ABC’s “Good Morning America” to talk about “positive” news regarding vaccinations and deaths from covid-19. “The overwhelming number of [covid-19] deaths — over 75 percent — occurred in people who had at least four comorbidities, so really these are people who were unwell to begin with. … It’s really encouraging news in the context of omicron,” she said in the segment. (A comorbidity is the simultaneous presence of two or more diseases or medical conditions in a patient.)
There was immediate backlash to Walensky’s statement. The clip from her interview spread like wildfire through disabled and chronically ill communities online. The hashtag #DisabledLivesAreWorthy began to circulate on social media. Disabled activists are continuing to work hard to engage in conversation with the CDC and hold it accountable.
In the days that followed the Walensky interview, there were allegations that ABC edited out crucial context. The full clip shows the actual statement was related to one recent study of vaccinated people, and Walensky reportedly apologized to disability advocates.
But the comments were still a reminder of the regular erasure, oppression and disrespect that disabled people experience. It is an attitude so ingrained in society that at the height of lockdowns, protests were being held across the United States against restrictions put in place for our safety. These protests were an act of rebellion for many, the sentiment being that the country should reopen at all costs. A protester in Tennessee held a sign that read “sacrifice the weak, re-open TN.” The disregard for disabled people’s well-being — medically and structurally — is constant and unrelenting.
For those in our community, the message throughout the CDC gaffe seemed to be clear: Good news, our government said, only people like us are dying. We also have to wonder how many people in the newsroom watched the clip and said it was an acceptable point of view. Perhaps the better question is if any disabled people were in the room at all where these decisions were being made.
What’s more, the underlying sentiment of these comments is steeped in a long legacy of eugenics, which has a storied and complex history with disability. Eugenics is a movement that believes that it is possible and necessary to improve the genetic pool of the human population. Since the 1800s, eugenics — which was coupled with the rise of phrenology, a pseudoscience in which humans are categorized, evaluated and ranked by the shape and size of their skulls — has been wielded as an often racist, ableist means of controlling populations and discriminating against entire communities.
Historically, this has played out in the forced sterilization of disabled folks and “marriage penalties” for disabled couples. Those attitudes are still felt today: During the pandemic, there have been reports of people with mental disabilities being given “do not resuscitate” orders against their will; high-risk employees have been forced to return to work without protections; and, of course, the attitude has been adopted that everyone will inevitably catch the virus but at least only the “unwell” will die.
We hear that people are tired of staying home — no doubt confused by the poor messaging from their governments — desperately lonely and yearning for normalcy. We hear that, and we feel much the same. But we also believe in community care above all else. We know, having lived lives of interdependence, that our decisions do not exist in a vacuum. We know we are valued less because we need more costly medical care, because we require support, and are often not able to be “productive” in the way that our capitalist society demands. But does that mean we deserve to die?
The divide between the non-disabled and disabled communities has deepened and caused wounds that may never heal. For Mary, as for and many in the disabled community, the message is that our lives are disposable. We are simply seen as unworthy, a drain and burden on society. Rest assured that as a queer, disabled woman of color, I am worthy. Our lives are just as worthy as those in the non-disabled community.
At the beginning of the pandemic, we hoped the world would start to learn some of the lessons the disabled community has long known. We wished they would realize that collective care is the way forward and that we are trying to advocate for a world for all. At the very least, we hoped the world would recognize that any day, you could easily become like us. And if you do when you catch covid, or have an accident, or fall sick in any myriad of ways, we will welcome you to this world we are fighting to build — one where all lives are valued.