With the new COVID-19 vaccine slowly starting to be distributed across New York State, I’m finally starting to feel a glimmer of hope that this pandemic will slowly start to wean. By the end of the summer, it is very plausible that the vaccine will be distributed widely enough to slowly start quelling the fear that has been lingering since March.
The death toll will lower. Hospitals will be less overwhelmed. We will soon enter a new stage of survival. Being able to stroll through Target, see my partner and my friends, or go out to restaurants will soon carry less of the intense COVID-panic. And yet, whenever I imagine myself slowly easing back to life as usual, I’m not that excited.
Are disabled folks just expected to happily jump back into life? Just stroll on back into the world and pretend like everyone wasn’t willingly killing us for months?
It’s not that I never knew that people are either unconcerned with or blatantly annoyed by the disabled before this pandemic– I learned that at a very young age. Even though my generation hasn’t lived through the Holocaust or the Eugenics movement, we are well aware that that ideology never left society. Disabled people are constantly managing small, bite-sized isolated reminders of society’s active hatred of disability. It’s felt in every Medicaid claim denial, in each internet death threat, in every high school bully, in each of the government’s yearly attempt to cut back our services, and in every single well-meaning comment about how much people wish we were more like them or how they would rather die than be like us.
It’s safer to acknowledge the gravity of each of these occurrences as isolated incidents, so we are still able to move forward thinking that that was just one guy or just one time. When we allow ourselves to feel the collective weight of these incidents, we collapse. We don’t make it through. I’ve spent more than one day lying in bed all morning because it just all started to pile up. In pre-pandemic life, denial or dissociation was almost necessary for my ability to get through the day interacting with others in non-disabled society.
Yet, in post-pandemic times, almost every day has been collapsing under the collective weight of acknowledging how little society regards disabled folks. There’s no escape, no dissociation this time.
The government has been advocating for herd immunity. Many remain unconcerned, because it’s “only the sick and elderly that will die.” The hospitals treat us last. The hospitals give away our ventilators. The hospitals shrug when we die. NYS decides to hoard COVID positive patients in nursing homes, with little regard for the disabled people already living there. Because of this, thousands die. Our Governor refuses to take responsibility. Our Governor says “who cares?” There are more mask-less Instagram gatherings everyday than I can count. Every week there are new protests about how wearing a piece of fabric to protect others is Anti-American. We aren’t prioritized first for the vaccine, despite being told for months that it was “only us” that would die. Everyday people complain that masks are inconvenient for them. Everyday people like me are forced to hide indoors away from everyone, or risk death if they can’t.
What we are witnessing is the natural conclusion of a culture built on anti-disability and violent individualism. I can no longer deny or dissociate from knowing that people would probably prefer us dead so they can just carry on comfortably without a concern. I always imagined most probably being entirely content if we all just disappeared, and we are now witnessing the large-scale validation of such. It’s no longer one or two people or instances dispersed throughout the week – this time, all at once, the entire world is nodding along.
I have a hard time imagine myself going back into the world after being forced to stay inside for almost year because of other’s recklessness. I don’t know how I’m supposed to look people in the eye. I don’t know how I’m supposed to sit across the table from someone from my pre-COVID life and answer to how I’ve been doing. I don’t know how to talk to people that think how I handled the pandemic was simply “overly cautious” instead of necessary. I don’t know how to integrate myself back into a society that was willing to kill thousands of people like me just for capitalism and non-disabled comfort.
I almost want to shake my adolescent and college-aged self, thinking about how desperately I wanted to “fit in” in the non-disabled world, how well I thought I pulled it off. How much I used to value being accepted by non-disabled people.
I’m a different person than I was before 2020. I always knew a deep hatred of disability was ingrained in our society, but not having to face it this acutely until now allowed me to spend years trying to dissociate it off or intellectualize it away. The idea of us being genuinely valued in society was just an underlying hope that allowed me to survive constant day to day ableism. It was a blanket that needed to be ripped off once and for all, no longer retained for when that reality became too cold to sit in.
We are not helping ourselves by denying the reality we are immersed in. Moving forward from this is learning how to tactfully navigate between crip spaces and the rest of society. It is advocating for a radical reconstruction of our country, one in which healthcare is universal and not dependent on ones productivity, wealth, or able-bodied value. It is no longer molding myself to try to fit something that was never made for me. It’s no longer trying to impress those that, when backed against the wall, are the first to advocate for my eradication. It’s not crumbling under the weight of this or trying to “look for the good” anymore – it’s sitting in the nuance. It’s being able to face other’s disregard for us head on and still manage to believe that we are worthy. It’s understanding what others think of us while still having the strength to know that they are wrong. It’s imagining a better life out there for our disabled brothers and sisters, passing down years of crip wisdom to each other, and doing whatever we can to grasp onto that life out there somewhere that’s better for us, always so close but just out of reach.
Despina Bakos 