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?
Despina Bakos 