I Was Unprepared For 2020

*Trigger Warning: This article contains discussion about COVID, sexual assault and disabled death and discrimination.

I knew people were comfortable watching disabled and elderly people die, but I was wholly unprepared with the joy with which people would leap into harm’s way under the belief that only the vulnerable would die. They partied in the face of people on their deathbeds. Stomping to the beat of a throbbing bass so powerful that their footprints left graves in the ground. They wanted us to die—and likely, by the time I write this, 350,000 of us have.

From an early age, I knew that no one who wasn’t related to me would care if I died. Almost every school had either left me behind during emergency drills and said that “someone” would come to save me. I never met who that “someone” was supposed to be. During the times when we were escorted out of the building before the drill started (to not mess up the time the school had to report to the fire department) the other disabled kids and I would watch our classmates participate and ponder what would happen in the event of an actual emergency.

“What would happen if this were to happen for real?”

“Put our heads between our legs and kiss our ass goodbye.”

Disabled children are confronted with our potential disposal from an early age, so 2020 should not have shocked me. How many school shooting evacuation clips have you watched in this great country of ours? Have you ever seen physically disabled kids leave the building? You don’t even notice us to realize when we’re missing.

You hide us away in nursing homes and institutions, for this exact reason, so that when we’re killed, you’re already used to us not being around. Despite community based care being more fiscally responsible and a win on all sides, institutionalizing us has never been about the money, but hiding the harm this country perpetuates on our bodies in the name of profit while we whither and die out of sight. And, the plan seems to be working, with about 40% of COVID deaths nationwide being from nursing homes.

Disabled people look on as each time one of us is killed by a caretaker or family member, the news and public brushes it off as “understandable” because we’re “burdens.” We sit in awe as pro-life and pro-choice advocates only seem to agree on us not existing. Even the straw “debate” turned environmentalists into eco-fascists the moment disabled people weighed in to say that single-use plastics save our lives. (where do you all think those single-use face masks are going to go, exactly?)

Disabled people have been raised to believe that our own deaths were inevitable and for nondisabled people, an opportunity to celebrate.

To add insult, 2020 is the year when all of the accessibility you told disabled people wasn’t possible or was too expensive springing up. You all taunted us with the access you made in a heartbeat while the disabled people who could have used it prior to the pandemic were left to slaughter. It was like you all were bartering.

How many COVID deaths do we need to be able to work from home?’

How many dead before we get remote education?

It was all possible, you just don’t give a shit about disabled people until you need a public relations strategy.

So I knew. I knew what this was going to be like for disabled people, because you have groomed us to believe we are disposable from childhood.

What I was shocked to watch, however, was the absolute glee with which you would abandon your own well-being and broadcast it to the world.

The same people who are the first to suggest an unhelpful exercise regimen or a Ponzi-scheme cure had no problem throwing themselves bodily before the mercy of an airborne virus for the sake of liberties that don’t really exist and a country that has left them to die. Essential workers became sacrificial lambs and frontline workers were told the dollar was more important than their lives.

You thought you were only throwing us away, but the system has no use for you either. You thought it would only be the disabled and medically vulnerable that would die, but you only replaced and outnumbered us. It must be all that “special treatment” you’ve been talking about. Is that what you’ve wanted all along. All. Of. This?

I know that many of you seem to believe that a disabled existence is projected as a utopia where everything is taken care of, but no one in this country has ever treated well those they took steps to ensure wouldn’t survive. As you read this there are those who didn’t believe the virus was real who won’t be able to go home because they’re now disabled and their homes are inaccessible—only 6% are. Under normal circumstances, this would mean being admitted to a nursing home, but at the moment, they’re not taking new clients and as previously stated, they have some of the highest rates of COVID deaths. That means living in the community, right? Maybe, there are entire neighborhoods that will protest you living there as a disabled person and there’s also the likelihood that you may not be able to afford to. Most government funded waiver programs for disabled people are struggling because of the COVID pandemic, so you will likely have to file for some form of disability, but “just go on disability” isn’t as easy as you all have been led to believe—about 110,000 people have died waiting for disability benefits in the last decade and its common to go through the process for years. And, while jobs have become more accessible because of the pandemic, employers that offer health insurance aren’t exactly jumping to hire disabled people. Let’s say you are able to find a place to live, settle in and want to start a family, if you are on social security income, you can’t get married without losing your income and potentially your healthcare. You will be forced to live in poverty while your life is more expensive for you to access. If you want to have children, the government and your family can forcibly sterilize you, abort your fetuses or have Child Protective Services meet you in the delivery room under the assumption you cannot care for children at all. Not only will this be because of eugenics, but you are that much more likely to be sexually assaulted because of your disability. And while you are faced with all of this, the people around you will act as though you’re only “complaining” about not being able to get into spots around town. I haven’t even touched upon the psychological effects of being disabled.

All of your successes will be you “overcoming” your disability while all of your failures will be because of it. Rarely if ever will you be judged by your own merits in a way that helps you grow. All of the friends and family around you currently partying through a pandemic aren’t exactly the type of people who will check to see if a place is accessible or safe for you to go out with them going forward. They will likely gaslight you about your accessibility, tell you you’re being a downer or dramatic and ghost you entirely. They will only come around again when they need clout for having you around. And, if your Black, Indigenous, or a person of color, it’s worse—because while they discuss light skin versus dark skin, class and privilege, they won’t even notice that the people with disabilities who look like them aren’t even in the room. Many will wear the names of police brutality victims on their shirts but cannot tell you that 50% of them are disabled. Disabled people of color aren’t accepted in our entirety in life or death.

To make matters worse, no one has prepared you for any of this and every second of screen time disability gets is meant to make nondisabled people better about themselves with our bodies and minds serving as a litmus test. They don’t even know, or care to know, the problems that need fixing, they are only concerned with cradling themselves in the bosom of our oppression or using their performative treatment of us for clout.

This is obviously only scratching the surface, but is this the “special treatment” you were speaking of?

For a group of people whose most prevalent belief is that it is better to be dead than disabled, you jumped at the opportunity to be us. You protested an airborne virus—acted like it could hear you enough to care and led 350,000 people to their deaths. And sure, we can try to blame this all on a government that couldn’t seem to be bothered, but the truth is, they there are many exhibiting and modeling risky behavior because they couldn’t be bothered. “Life goes on” you said. Many of you didn’t even have to utter a word to let us know what you thought of us.

Well, here’s the catch, all of the worst things you thought about disabled people will now be the thoughts the world has about you, and likely, the thoughts you have about yourself (there’s a reason why the highest co-morbidities for disabled people are depression and anxiety).

You want well-wishes for the new year? I have none. As I write this, hospitals around the country are reaching capacity. Our healthcare system is in collapse, but you will demand inspiration because that is the agreement of goods and services, we have found ourselves in. Right? Inspiration is the currency you use in exchange for pretending to care to keep us alive. Unfortunately, you could not keep up your end of the agreement. So we find ourselves at an impasse.

For 2021, my attention will be solely focused on the needs of my community and the ways I want to grow. This agreement is no more. I unsubscribe. I may have survived this pandemic until now, but living with this level of callousness all around me has stolen so much from I and other disabled people mentally. I haven’t been able to find the words I needed to describe any of this. So as you demand for this year to end so your cognitive dissonance can tell you that all of the badness of 2020 is behind you, the only words I can seem to muster for you for your 2021 are these two: good luck. You don’t deserve more than that.