Reflections

I Was Unprepared For 2020

"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."

*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.

18 comments

    1. Everyone really should take a few minutes to read this article…it’s so tragically true that it’s truth is monstrous…and we all need to re-invent our society to one of facing our callousness & racism…and eradicating those defects. This will be arduous and take a number of years.
      And this needs to be done before we reinvent our wretchedly selfish eye make-up to go with our single-use masks or our privileged career paths…

  1. Thank you for writing this so eloquently. In addition to my outrage at the treatment of disabled people (I am disabled), I am a retired nurse following stories about how badly COVID has been managed and the abuse nurses are having to endure (lack of PPE, lack of time off). I have outrage fatigue.

  2. Thanks for writing this. It resonates with me strongly and describes something that has been elusive for me. Basically what I’ve been experiencing is that historically I’ve been /half/ disabled (mentally, from abuse — anxiety, PTSD, plural) such that life has forever been flipping back-and-forth between being expected to be “normal” when I can’t be, and being treated as if I were disabled in which case I experience being dismissed (very much as described in this article).

    I especially appreciate hearing the experience about being left behind during fire drills. 🙁 *sigh* Man that is awful.. that certainly sends a strong message all right. Unfortunately I’m not surprised. I experienced my own kind of “left behind” in terms of being abused at school and administrators wanting to wave the problem away. Which it didn’t.

    Years ago I would normally have said “this shouldn’t be” in this spot here, but I’ve found out the hard way that saying that does more harm than good, because it keeps the expectation that things will change, when that shouldn’t be /expected/. So now I think “that’s just how it is right now”. I try to do my part to treat people well and not look down on them or dismiss them for disabilities — that’s the part I can control that will allow things to change if others follow suit. Maybe one day compassion will reign. There are people who are trying, I’m not alone … but we have plenty of evidence that we have a long way to go.

  3. Facts. I have had close friends and family that fall into this group. My friend who was a teacher abandoned during fire drills, healthy parking in the handicapped spot because they were just going to be a second, and complaints about the “special help and costs” necessary to give differently abled a good quality of life. I had to constantly fight the system to get my son with CP the services he needed and deserved. I can’t even imagine the difficulty in a underfunded school or as a minority. Pro-life means pro-living people now not just unborn.

  4. Dear Imani,
    Thank you so much for writing this. Painful to read and agree with. You made your case with such clarity, focus and persuasion. What a great writer you are.

  5. Absolutely correct. And speaking of working or schooling from home, I’m irritated beyond belief that while able boded workers and students are now reaping the benefits of remote meetings, we still get left out when there’s no captioning, no CART, no text accessible materials, no ASL interpreters.
    I’m trying to apply to grad school for a Master’s degree program in Vocational Rehabilitation Counseling, because there’s a serious shortage and maybe a pwd counselor would be valuable.
    Guess what? One state university offered me the “gift” of requesting accommodations (I’m Deaf) for the required phone interview (with multiple time slots and days to select) with the Director of the program.
    Ya know, the person who’s supposed to be teaching students how to work with pwds and ensure they learn “indepence”?
    They brushed my request and said they couldn’t get the accommodations! I was furious but did the interview with my OWN assistive devices but you better believe I used that interview to question how they could convince ME that they’re capable of training counselors to work with pwds when they can’t even grant a typical accommodation for a would be counselor!
    Somehow, I’m seeing red flag, especially after they told me that they usually had Deaf accommodations “80 % of the classess”. Um, so that means 20% will be inaccessible? And this was by pre pandemic calculations! Does that mean I’d still be graded for the 20% I can’t ACCESS???
    Another college is offering the same degree. Looked them up and there was a video included that introduced the director explaining the program.
    And no captioning.😠
    The sheer arrogance and exclusion by the people who TEACH inclusion is stomach turning.
    I guess if I’m accepted, I’ll be doing some teaching and educating the educators!

  6. “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.”

    It was truly amazing to me how many people just thought it couldn’t happen to them.

  7. As a woman with cerebral pasly. experienced hate first hand and teasing constantly none, stop for my Disability all the way up to high school. Got my ass kicked for being to different “witch was fucking stupid if you asked me no one.

    Believed Disabiled People’s can get bullied that it totally can take a toll on ya, if you let it same go for family. To not believing you as well . Bullying teachers made, my life no better. They thought by making fun of me or embarrassing me was awesome, . And cool not.

    Even by a long shot they we’re all stupid and ignorant asf one male teacher didn’t even know I raod the, short bus. So

    He made a joke. *I replied you do know I ride the short. Bus my guy* he was like oh damn my bad. I laughed it off because it didn’t bother me but the class got silence after. The joke. I went on my way. That day after school was over

    I never faced anymore, ableism. If ableism People’s we’re in our shoes even the elderly they. Would all stop being selfish. And evil towards both parties .. but karma does exist for that reason right

  8. I came across your article on LinkedIn and it brought me here. This article was brave, succinct and tense; so, it was perfect. And needed to be said out loud. I have been so upset this last year because of the way healthy people have reacted to this pandemic. I have battled severe heart failure since age 40 caused by a virus attacking heart muscle. I am lucky to have survived even though I have low-function now. I am in the heart transplant program, but have successfully avoided heart transplant with therapy for 11 years now, however, if I get COVID, it is most likely a death sentence. CDC says heart patients are 12 times more likely to die, so like most with disabilities, March of 2020, I closed my business and self-isolated. That is what our government asked us to do – to hide. Luckily, I have family who are now completely responsible for keeping COVID away from me. It is very heavy as they go to work daily and worry that they will bring it home somehow. The hardest part of all of this was watching the response of others, and how callous they were about how they would be fine, and only the sick and vulnerable will die. I was the healthiest I had ever been in my adult life when the first virus attacked me. People are stupid to believe they are invincible. Now, I live in Florida, and I cannot get the vaccine because our State is only allowing 65 and older to be vaccinate – no matter how vulnerable you are. My transplant cardiologist thinks it may be summer until we have a turn at the vaccine. The thought that I will be stuck in my house, unable to work, for another 6 months is unbearable. The thought that I don’t matter is causing a mental strain. Watching the seniors here complain and line jump so they can golf, go to the beach bars and hang with friends burns my soul. I am a advocate and interior designer for those with physical and cognitive disabilities. While in college, I had a professor once tell me, “You can’t make people care.” I remember being angry when he said that and vowed to do just that. But, many years later now, I bow my head to his pettiness, because he was right. People do not care.

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