Living with a physical disability during the COVID-19 Outbreak

As I’m sure you could imagine, part of the reason I even started this blog to begin with was in trying to adjust to a new kind of normal, now quarantined in my apartment. I use a wheelchair and have a lung disease that would greatly affect my chances if I come down with the novel coronavirus currently taking over NYC in staggering numbers — so my days carry on within the walls of my Brooklyn apartment. Waiting, watching, hoping. Trying to fill my time with something other than watching Netflix for seven hours straight.

As of date, I haven’t left my room since March 9th. I frequently get asked why I don’t just go outside my building for a walk or to get fresh air, and even entertaining that thought makes me anxious. The image of being stuck sitting in the elevator with strangers, touching the same buttons, holding my breath as someone leans over me to get the door because I have trouble with it on my own. Then walking down a major street in Brooklyn with all of the unmasked daredevils that I see from outside my window, or imagining what my wheels will track into my apartment from outside. Sacrificing a few months of being indoors for peace of mind and safety is a no-brainer for many that have dealt with significant medical conditions throughout their life. That’s obviously not to say that I don’t miss outside or life as it were, of course I do.

But it is not just the idea of living with the horrible effects of virus that terrifies me, it’s wondering whether I would even get the privilege of being offered a shot at survival. As seen time and time again in our history, whenever medical treatment or supplies are rationed, the disabled come in last. Our lives are so devalued in society that we’ve collectively endured mass genocides (re: holocaust, eugenics movement), and it therefore sadly comes as no shock that disabled people fall at the end of the line yet again in times of an international medical crisis.

There are stories of disabled people getting ventilators they need for daily life taken away from them because non-disableds need them. There are stories of non-disabled people getting picked for COVID treatment over someone with pre-existing medical conditions because their lives were deemed more important to save. America does not have a sustainable healthcare system, and we were in no way prepared for something like this to sweep the nation. We just don’t have the equipment or the manpower, and when we create a culture where medical staff have to pick and chose who is worthy of life-saving treatment, we have failed as a nation.

(Further reading on this can be found: Here, here, here, and here.)

That’s the image that sticks out in my mind more than anything: Stuck laying in a bed in the hallway of a hospital somewhere without my wheelchair (because ambulances don’t have wheelchair lifts), without my parents or my aide or my partner, barely being able to breathe, and watching all of the non-disabled people getting ventilators instead of me because their lives are considered more valuable.

Disabled people live with this reality everyday of our lives. Terrified and infuriated does not begin to cover what is felt when reading these articles, when waking up in the middle of the night in a stress-dream induced panic. Society viewing us as ‘burdensome’ and ‘in the way’ of their lives is not a revelation for me, I learned at a very young age that I would have to fight for things that non-disabled people waltz into a room and get handed. I vividly remember actually being grateful for wheelchair accessible bathrooms and access to home health aide services as a child, understanding even at such a young age that the ability to use the toilet or get out of bed in the morning to take a shower is not something considered a given right for me in this country, like it is for everyone else. There is a thin line in America between being left in an institution to die and living in the community having to beg for access to services, and that slim mark between life and death is a reality many of us carry with us everyday.

Maybe I should find some peace in at least none of this coming as a shock, our community has just been waiting. Or maybe that’s too sad of a thought to actually admit.

I’m no stranger to putting life on hold for random medical concerns, and maybe that’s why it’s always so jarring for me to see the public’s inability to just sit. Not protest, not cause a scene, just sit at home and save lives. But here in America we care about Liberty! and Freedom!, and apparently that means that we must retain the God given right to command someone else to risk their lives to do our hair and give us tattoos every other week. Love that for us. Besides, it’s only the sick and elderly that will die, right? Isn’t that what they want to do, anyway? It’s not like the disabled are over 20% of the population or anything … It’s not like the non-disabled can briskly revoke that title and come join the largest minority group in our nation at any given moment … right?

A glimpse at what ableism looks like post-ADA

I wrote this in the summer of 2019 for that year’s anniversary of the Americans with Disabilities Act, and I find it to be a particularly appropriate introduction to my new page. Looking back, I also want to highlight that the kind of ableism one faces depends entirely on class, race, gender, education level, the type of disability you experience, and a range of other factors. I want to acknowledge the privilege I have in even being able to take part in higher education and the ability to move independently throughout my community. Therefore, it is imperative to note that these are just some of the many forms that ableism can take in our modern era. I can only wish that as our country (hopefully) moves forward out of these dark times (*cough cough* this administration), more stories will be heard, shared, and learned from.

[Image Description: Various photos of disability rights protests over the years, ranging from the 504 protests, Capital Crawl in 1990, to current fights against Medicaid cuts.]

The kind of disability rights activism I chose involves academia and a PhD, hoping that I can change how institutions treat the disabled from inside the system. As important as that may be, not a week goes by where I don’t acknowledge that the only reason I’m able to do so is because of all the ones who have and continue to fight for my right to have equal opportunity in society. On this anniversary of the ADA let us acknowledge the brave people who have fought, let us keep in mind all we have gained, and let us work toward accomplishing all that’s left to do. 

**

What else is there left to do, you ask?

As the daughter of an immigrant, I have been consistently reminded throughout my life that I would not have had the same quality of life if my father had not come to America. I distinctly remember being 10 years old on a trip to visit family in Greece and having to explain repeatedly to someone that no, I could not swim independently because no, my disability cannot be cured by “trying harder to use muscles.” 

I wasn’t supposed to deal with that here. 

At 12 years old living in Queens, I overheard someone tell my parents that they were “amazing” for raising me. I quickly learned that my existence is supposed to stress people out enough to make them want to leave. Not doing so is apparently God’s work. 

At 13 I took the public bus for the first time and watched the driver look at me, sigh, and say “this is just not my day” as he pressed a button to open the ramp. 

The first few days of High School I ate lunch alone because all the other disabled people had a different lunch period. I latched onto the first able-bodied people that spoke to me, and soon learned the ones that would only do so to try to see if I was “retarded” enough to laugh at. 

At 19 I sat front row in a philosophy lecture where the professor told the entire class that if he was in a wheelchair, he would shoot himself. When confronting him in office hours by saying that his statement was very inappropriate, he said: “I’m sorry you’re misinterpreting what I said. That was a compliment. It must be really difficult. I could never do it.” 

By the time I was 20 years old, I had scrolled through hundreds of names of disabled people who were victims of “mercy killings.” I read stories in the news about people killing mass amounts of disabled people to “end suffering.” I read incessantly about the eugenics movement, about freak shows in Coney Island, about Willowbrook. I watched as movies and news articles about people like me killing themselves were romanticized by the able bodied. 

No one talked about our lives, just our deaths. Which sadly made sense if the assumption is that our greatest wish is to either become able-bodied or die. No wonder the medicaid cuts, the lack of access to affordable accessible housing, the inability to get married or hold a job without losing the kind of health care appropriate for us. Our existence to them is precarious enough to not take seriously. We’re only valuable when we’re suffering—when we can be their tragic, almost-beautiful image of inspiration. 

By the time I turned 21 I was very attuned to when people would take pictures of me and my friends in public spaces. We learned how to ask them to delete it. We learned to hope they listen and don’t walk away with a piece of us. We learned to wait down at the end of the subway platform for the men to go in the elevator first, so we don’t have to be alone with them in such a small space. We learned the statistics. How much more likely we are to be victims of abuse. We tried to quell the anxiety of having targets on our bodies by learning the best places to hide pepper spray in our wheelchairs. We’re already at eye level with everyone’s midsection, so aim for hitting his privates if being threatened. Share locations via iPhones if going on a date with a non-disabled guy. Actually, keep sharing it indefinitely. We learned what parts of our city we should never travel at night alone in. We learned what places we can hardly travel to at all because most of the stations in NYC don’t have elevators anyway. 

When I was 22, my friends and I paid for bottle service at a club for one of our birthdays. Twenty minutes in when more non-disabled people were filling the crowd, staff picked up everything off our table and escorted us out of the club into the restaurant section. When we asked why, they provided no explanation. Eventually, after repeatedly asking, they let us go back to our table at the dance floor. We spent the night warding off middle aged men asking about our diagnoses with a certain excitement in their eyes that we have come to fear.

That same age, I began graduate school applications. I almost missed my first PhD interview because all six elevators in the building were broken. Thankfully, we were able to have the interview on the first floor. The professor said, “This must have been pretty stressful, you seem so … calm?” I shrugged, “If I got that upset at every threat of discrimination, I wouldn’t be a functional person. I wouldn’t be able to leave the house.” I didn’t get in to the program. 

Another PhD interview consisted of spending 15 out of the 20 minutes being asked in a variety of ways whether or not I’d be able to withstand the program. If I could handle “this kind of work” or “really long days” or “getting to class everyday.” By the time he read my resume to understand my credentials and (hopefully) place me on the same playing field as all the other applicants in the waiting room, I had 5 minutes to try show I was deserving of one of the spots in the program. Everyone else had 20 minutes. Obviously, I didn’t get in.

Finally, an interview went extremely well. Of course, my first thought was that I must have missed something. Maybe I was being too hopeful. When the acceptance letter came in the next month, I tried to convince myself I must have been at the bottom of their acceptance list. The last resort. Or maybe just something to check off a diversity box. It’s an embarrassing thought for me to look back on now, but I shouldn’t be hard on myself. Of course I thought that, I learned in enough spaces over the years that this wasn’t supposed to be my place. 

At 23 years old in my first year of the program, my placement was at a nursing home/rehabilitation center. Every week for the first few months someone in the building would assume that I lived there. “Are you coming to bookclub?” or “What room do you live in?” were constantly questions I would have to smile politely to for the sake of my career. Six months in, a new security guard wouldn’t let me off the premises until she was able to confirm with 2 different staff members that I wasn’t lying to her about working there. The threat of institutionalization is never far off.

A few months ago while on the bus with one of my non-disabled friends, a random woman came up to them as we were getting off and said, “That’s so nice you’re taking her out today. God bless you.” When we got off the bus, I expressed how condescending that was to my friend, who then said: “I hear you, it must be annoying. But aren’t there bigger problems in the world?” I was silent. I didn’t know how to explain that the world assuming I don’t usually leave the house isn’t a light statement. We are seen as weak, vulnerable, incapable. Too different. Subhuman. Something just to gawk at. To take advantage of. It has consequences. It builds policies. It builds barriers. It causes all of this. 

**

The passing of the Americans with Disabilities Act was an amazing advancement in our fight for equality. I’m grateful for the life it has afforded me, and for all the brave people that made it possible everyday. Here’s to all we have accomplished & all that’s left to do.