In 2007, I was a 22-year-old college senior in “way-the-hell-upstate” New York. I was about to graduate school with a dual degree in Music Business and Mass Communication, lived in the residence halls all four years, had lots of friends, and I was registered through Student Disability Services because of my autoimmune disease and my disabled status.
I went to parties, cured hangovers with way too much Domino’s pizza, was a well-known campus drummer, and had several jobs. I also took steroids every day, became unnaturally acquainted with local and not-so-local emergency rooms, and was injecting myself with prescription drugs in my dorm room just so I could function.
I was always transparent about my illness, and I tried desperately to never let it hold me back from accomplishments in life that were important to me. Yet while I was doing the “right” things during the semester, informing teachers of physical limitations, dragging my arthritis-ridden ass through several feet of snow, and studying like a maniac to compensate for any time lost in the classroom, I received a C in Broadcast Journalism, only because I was unable to attend all of the lectures.
It’s something that burned my ass back then, and still burns my ass now, because I had As on all projects and tests, and I was open with the professor about my health. My grade was knocked down 2 letters. And 13 years later, because of a pandemic, the same school that reduced my score for not being well enough to show up in-person has determined that students will finish out the rest of the school-year online.
Will they get Cs, too?
I wish I could say that this is the only example of societal injustice that I’ve noticed during our current health outbreak, but it really only scratches the surface.
The whole idea that the world is losing its mind is based mostly on fear, but the result is self-fulfilling. And the idea that our society has allowed this to occur and has completely overlooked the impact on people with disabilities and/or people with underlying conditions really shows how out-of-touch we are. People who are able-bodied or otherwise healthy have gone scorched-earth on their own luxurious resources, and when shit got rough, they laid a massive dump on a lesser convenient version of their lives, (read: our lives), and managed to botch that up as well.
For example, I am not someone who just casually uses delivery services; I rely on them. So when people who are at a relatively low-risk are abusing the only systems in place that disabled people actually depend on for survival, it’s ableism for the ages. Because not only can we not just start physically hunting around the supermarket for toilet paper like the rest of America’s cavemen, many of us ARE the actual high-risk population that shouldn’t be going into a packed grocery store to begin with.
For as long as I can remember, as a person in the workforce who is physically disabled, immunocompromised, and medicinally immunosuppressed, I have spoken out emphatically on social media and in my blogs about how absurd and archaic it is that I have always had to physically go into an office every day. I work in the medical field, but there have been plenty of times during my career where I could have done my job from the moon if I needed to. There were also many times that I called patients from my bed while recovering from surgery or when I wasn’t feeling well, simply because I cared, and more pointedly – because I could. I always had to use “sick” time in these scenarios, but I found it to be strange that the basis for not being allowed to work-from-home was virtually (no pun intended…) non-existent. The accommodation was never actually considered, and it wasn’t even determined on the actual fact that it couldn’t be done remotely, given the actual fact that I was actually factually doing it… from home.
As time went on, I had managers that started off as supportive, and then when they realized that I had very little control over how my genetic disorder ravages through my body, it became inconvenient… for them. I’ve had supervisors tell me that I should consider a different career, and even one who told me I would never be promoted because “you need to be here to do the job.”
Planet Earth, Q1, 2020: “Hold my beer.”
When you flash-forward to the present day, where we are in the middle of a global crisis, all of a sudden the opposite is proving to be true. Thousands of businesses all over the world have not only figured out how to shift their brick-and-mortar operation to a laptop-in-my-underwear arrangement, they’ve also determined that it is necessary to do so, for the health and safety of their employees.
Yep. You read that right. When I have pleaded in the past for the “health and safety” of my own medical circumstance, I was ignored, and frankly, treated like a burden. But now, for the “health and safety” of their employees, thousands of companies proactively flipped their entire business models on their heads. People like me have been fighting the status quo and the stigmas surrounding being a sick employee for my entire adult life, and while I have been penalized for showing up late to work because I wake up most days unable to walk, able-bodied employees are now being MANDATED to not show up at all.
But what about those of us who are permanently sick? Sans the high-risk population who will be hospitalized or perish, the outbreak, at its’ worst, will inconvenience peoples’ lives for a temporary period of time. Emhpasis on temporary. Some of the group will be carriers without symptom, and many of the rest who do end up feeling traditionally ill will recover and be just fine. That is hardly the same thing as waking up ::every day:: and dealing with the physical, emotional, mental, and financial struggles that people who are chronically ill face without resolve.
When it comes to the procedural 180 degree turn, it’s hard to ignore how dramatically things have shifted, like the fact that I keep hearing from people all over the place that it’s “unfair” that they have to pay for car service because they don’t feel safe taking the subway. While a warranted fear, it’s also a privilege for it to be a choice. As someone who is physically disabled, skipping public transportation is something stopped being a choice for me a few years ago when my health rapidly declined. I pay NYC taxes like everyone else, but I also pay about $1,000 a month in Uber fares just to get to and from my Park Avenue post. And yet now, while I’m working from home and not needing cabs every day, ride share companies have suddenly implemented discounted transportation programs for healthcare workers who, ironically, are physically able to take the transportation available to them.
Why is it that when the majority of the world wasn’t needing this resource, spending 20% of my paycheck to commute wasn’t ringing any alarm bells, but now that a lot of people are feeling helpless, it’s making the nightly news?
I’ve also seen several instances of organizations and fundraisers putting aside money for employees who contract the virus and can’t afford to be out of work. I found this to be a really great societal moment, but I also couldn’t help but think about all of the times I’ve gone without pay because I’ve been hospitalized, or because I’ve had to recover from monthly chemo infusions. As I’ve mentioned in previous blog posts, most employees are allotted sick time each year. But while our culture understands that people get sick and get better, we seemingly haven’t figured out how to give a shit about those of us who get sick and get sicker. This is a hard truth to digest for many of us, when our allotted time banks disappear, but our ailments unfortunately don’t.
Circumstances surrounding Rx refills have changed as well. When I’ve needed pain medication in the past, my pharmacy strictly adhered to an internal (read: unecessary) policy that limited me to specifically pick up my meds on the last day of the prescription. In order to be available, I’ve had to change shifts at work, leave my mother’s comatose hospital bed to travel back to the city, and just a few short months ago, in order to be with my family on Christmas, my pharmacy forced my doctor to send a letter releasing my medication 2 days early since they were closed on my normal refill day due to the holiday.
But as a result of the pandemic, the medicine that I rely on to function is now available 5 days before the end of the script, no holds barred. How is it possible that I have been shamed and treated like a drug dealer every single month for years, and now, the rules are relaxed overnight, almost as if they were completely arbitrary in the first place. (See what I did there?)
**Update from March 15, 2021 – this only lasted for 2 months. It’s important to note that my pharmacy seemingly did not put the aforementioned system in place to help patients during a pandemic at all, but rather did this in error and punished me for their mistake. Making matters worse, they then refused to work with me during the pandemic, forcing me to physically come into the store to pick up this prescription on weekends since they only do deliveries during the week and would not change my refill date to accomodate my need to avoid public settings.
Sick people need medications and often have to jump through hoops to get them. Do you know who doesn’t? Otherwise healthy people who are now the reason these restrictions are being lifted. Which is ironic in its own right, since the change was implemented solely to give peace of mind to those who are afraid of getting as sick as those of us already living the life everyone is freaking out about.
In a short month, we’ve moved quickly from businesses offering simple, low-level niceties to a robust carte blanche list of accommodations that, frankly, make me want to bash my head against the wall. It’s wonderful to see that these things are happening of course, but our country’s baseline of inaction and lack of compassion for those who experience medical hell on a full-time basis makes me have absolutely no faith that this sentiment will continue after we’re able to resume our lives as usual.*
(*”As usual” = society going back to treating the chronically ill like we “earned” our circumstance, suspiciously soon after accommodations were made globally for those who didn’t “earn” this one.)
In addition to the early steps taken at the beginning of March, we have since seen our entire healthcare system overhauled to a telehealth setup, while the physically unwell and disabled have had to previously rely on family and friends, public transportation, costly car services, or complicated state programs to get to and from appointments (usually to sit for 2 hours in the waiting room, just to see the doctor for 3 and a half minutes). Now, to have a visit with a clinician, all anyone has to do is pause the Price is Right, and from the comfort of their own beds, “meet” with their doctors with the least amount of physical stress imaginable. Again, this is mind-blowing to me when I think about how I’ve had to juggle my professional career, working full-time as a sick person, anxiously running back and forth to medical appointments multiple times a week, while trying to avoid being known for THAT vs. known for the job I do well. This is especially offensive, since the majority of the people this virtual resource benefits are those who don’t have any physical limitations in the first place. And those of us who have always had physical limitations couldn’t get access to anything even remotely close to this standard, before the physically well felt entitled to it.
Now if you think we’re off to a rough start, buckle up. Some of the more recent additions to this list may be the most unsettling of them all.
Have any of you ever been discharged from an unexpected week-long admission to the hospital, only to be welcomed home by an eviction notice on your door? Spoiler alert: I have. I don’t need to tell sick people this, but even with health insurance and a decent salary, medical bills and health-related expenses can totally obliterate a person’s financial stability. However, if you live in the country’s virus epicenter like I do, there is a 90-day moratorium on evictions as a result of the pandemic. So even though I’ve struggled because of a health problem I already have, there was zero protection for me (other than a gracious landlord). But now that many are struggling and facing a potential risk vs. the hardship I face every day, help is on the way (dear).
And student loans are no different. I have been paying off my graduate education for a third of my life, and I’ll likely be paying it long after I’m dead. As my health has fluctuated, I’ve had to resort to whatever I could just to stay afloat. Sometimes that meant lowering the monthly payments, and other times it meant serious anxiety-driven denial and dodging calls from the lenders altogether. What it’s never meant, however, was last week’s experience, getting a heartwarming call from the debt hunters, asking if I’m OK as a NYC resident, and my account automatically transitioning into an indefinite forbearance status without the penalty of interest accruals. When I have called in the past and inquired about my options, I’ve been asked 45 questions surrounding my medical circumstance, which never matters anyway after my salary is disclosed. And now, just existing in the state that is being pummeled was the event deemed deserving of aid vs. my lifelong debilitating illness that will be with me long after this moment in history has passed.
I would also be remiss if I skipped over the hypocritical behavior of all of the people, especially during the presidential campaign season, who outwardly spoke negatively of anyone in society needing help, like those on welfare or receiving unemployment benefits. It’s those exact critics who have supported our current administration in the reduction or elimination of those programs (even if unknowingly), who were also the exact people who were not exempt of the financial fallout from the pandemic. Better yet, these people were SO not opposed to these programs as a whole that they contributed to websites crashing when they needed to apply for assistance after their jobs were lost with the rest. I definitely don’t want to make this post political, nor do I want to have a heavy hand in condemning the oversight of those who couldn’t relate until now, but it is my sincere hope that experiencing hardship first-hand will help American citizens be more compassionate in the future.
Speaking of financial resources, in spite of all of my extra medical expenses, I am one of many who doesn’t even qualify for the stimulus check, because according to the parameters (2 questions…), I make too much money (which is honestly way less egregious than disabled dependants who won’t get a check because of their physical inability to work… ). I am so grateful to still be getting a paycheck, and as long as that continues, I should be OK. But how short-sighted is our government that they only consider your marital status and a salary reported in 2018? What about all of the people who filed their tax returns on time last month who lost their jobs this week? Or how about those like myself, who, in addition to excessive medical bills, spend thousands upon thousands on health-related expenses, that somehow never get counted when it matters? The latter expense alone is 87% higher than my peers who pay $127 a month for an unlimited metro card, and I definitely don’t make 87% more than someone who got their check this week.
It’s truly unbelievable to have all of these resources suddenly available to me after years of some serious self-advocacy. But it also really reiterates my earlier point, that our society treats chronically ill people like our health is a circumstance we can control, and it treats people who are sick who will get better (or die quickly…) as victims of a circumstance that was unforeseeable. It’s basically the difference between believing a sick person happens to society vs. understanding that the sickness happens a person.
Our country is so good at discrimination that we even assign different kinds of sick people different kinds of credit.
You might find it interesting that I wrote the shell of this blog post the week of March 9th, which was the last week I was leaving my house to go to work, or for anything, really. I held off on publishing it, mainly because things spiraled so quickly in NYC that my anxiety prevented me from being able to process my reality (and also, because the original post admittedly didn’t age well). But I am sad to say that in only 3 weeks’ time, I felt I had to come back and finalize my thoughts, before people are far enough away from the impact that they are no longer in a place to receive them.
Unlike ever before, we are currently living in a society whose sole developing interest has been to help people who have been (or might at some point be…) uncomfortable for 5 minutes. And what that really means is that the perspective of being a sick person is so horrifying, that healthy people will do just about anything to prevent it from happening to them. This isn’t really brand new information, but this is the first time in recent history that we will all be on the same page about this notion, and unfortunately, once the imminent threat is gone, the sentiment will no longer be shared.
So if you are reading this, and you are someone who is simply counting down the days until your life returns to “normal”, I ask you to consider this: there is no countdown for a lot of us, and our “normal” is still pretty fucked-up. Need proof? Our “normal” is your quarantine. The fear that you are feeling right now about the unknown is a constant in the lives of those who are chronically ill, and when we run into financial or physical barriers, there are no pauses in what society expects of us. In fact, it pretty much becomes the opposite.
When this pandemic is all said and done, and you are able to go back to work every day, consider your employee, who still Needs to telecommute, the way that you did so you could keep doing your job in the midst of a medical crisis. Consider your neighbor, who still wears masks after her treatments for her rare disease, like you did so you could keep yourself safe from infection. Consider your tenant, who will still struggle to pay rent after The Care Act is no longer in effect, the way that you struggled to pay rent when your job was furloughed. Consider your family member, who is not well enough to attend special events or holidays, the same way you were unable to be with your family during Passover Seder or when you had to get married in a desolate field without your loved ones over Zoom.
Consider how lonely you’ve felt being contained in your home, and that the regularly homebound people feel LESS alone during the pandemic because everyone else is finally in the same situation we are always in. Consider that, when the world came crashing down and you needed help, you received it, quickly, simply because so many people could understand your pain. Consider that, when you had to be safe, there were solutions, and prompt ones at that.
What if this situation we all find ourselves in only happened to you? What if your job didn’t send you home when the death toll skyrocketed in your city? What if you were the only one in your office with a compromised immune system, and you were told you weren’t allowed to wear a mask, or that you had to use your vacation time to keep yourself safe? What if you were furloughed, or worse, lost your job, and your bills were still expected to get paid? What if the virus prevented only YOU from missing springtime holidays with your family or events that had been planned for a year? What if when it wasn’t safe for you to go into the grocery store, you had no way to get food?
Would you have been able to get through this nightmare… alone? Without other people truly being able to comprehend what it was like to experience this first-hand? Without compassion and accommodation and camaraderie? Without millions of people cheering collectively each night, in order to recharge your morale?
What if this experience we’re in was uniquely specific to you, and rather than everyone else on the planet understanding what you’re going through, you were judged, left behind, called flaky, or blamed for this life?
Since it seems like humanity is only humane when our immediate privileges are threatened, I hope with all hope that now is the time when people will be able to empathize with the fact that it’s not a “what if?” for many of us. It’s our reality. And we have to fight to make sure that when society resumes “business as usual”, we take the time to remember how unusual our “business” has been.