Wednesday, March 10, 2021

My Job, Not My Illnesses, Got Me A COVID-19 Vaccine

For those of us who live with illness, the pandemic has brought into relief for many what some of us recognize is a daily slog of inequality and missed opportunities. There have been many lessons that I’ve learned over the past year, and I’ll have another post about that. But the major issue right now, is getting vaccinated. And I’ve been vaccinated, not because of my illnesses, but because of my job.

And I think that says a lot about what’s wrong with this country. We prioritize people’s careers over everything, including their health. I have chronically ill friends who are too ill to work. Or don’t work in healthcare. And they are still waiting to get vaccinated, with no real date in sight for when that might happen. So, they, and even I, who has been vaccinated, continue standing vigil over our own lives while seemingly everyone else attempts to get “back to normal” at our expense.

I thought everyone that wanted a vaccine would be able to get one. And that’s clearly not the case. My local hospital system has had to cancel vaccine clinics for weeks because they simply don’t have the supply.

My husband, who can’t work remote at all and has been public facing throughout the pandemic, has asthma and high blood pressure. He is on a waiting list, but because he’s 37, we literally have no idea when his turn will happen. And no one has accounted for people that live with high-risk individuals. Honestly, he should have been vaccinated before me because that would have provided mutually beneficial protection.

And if it weren’t for my job, I’d be waiting just like him. And there’d be no end in sight. And there’s still this archaic notion that only older people can be high risk. That only old people get sick. Like our state and federal governments think that allowing those 65 and older covers a large swath of the population. Thankfully, both of our moms have finally been able to get vaccinations.

But this is not the Oprah show. “You get a shot, and you get a shot, and you get a shot.” “A round of shots for everyone!” I get the job thing in terms of vaccinating frontline people first. I also get the idea of vaccinating the elderly. But the fact is, once again as has happened so many times during this pandemic, chronically ill people are left behind. We know exactly where we stand in the food chain. And in a world where it’s eat or be eaten, chronically ill people are the main dish. We are put on the altar of sacrifice with barely a second thought.

The slipshod, piecemeal approach doesn’t work. By letting the states decide, the guidelines just don’t make sense. For example, according to the New York Times, “Type 1 Diabetes will qualify you for a Covid vaccine in Ohio, but not in Indiana.”[1]

So instead of letting states decide, how about the government offer some guidelines? Didn’t we learn anything from allowing states to shut down and open up indiscriminately? Oh wait…Texas, I’m looking at you here…We’re still making the same mistakes that helped everything get so messed up to begin with.

I’m hearte1ned to see that in some places, my chronically ill friends (the majority of whom are under the age of 65) are starting to get vaccinated. But this is the vaccine Hunger Games, and for chronically ill people, the odds aren’t in our favor (unless you have a job that qualifies you).

Monday, March 1, 2021

Reflecting on Being a Graduate Student with a Chronic Illness/Disability

I am feeling triggered. Eight years after I graduated with a PhD from the University of Michigan, they are finally, finally starting to address the issue of graduate students with disabilities. While I was a student, I became vocal about experiences I, along with others, had as a result of identifying as a student with a chronic illness or disability.

I’ve linked the report, “Executive Summary of Report from Committee on Graduate Student Experiences with Disability Accommodations at the University of Michigan”, below:

The opening letter ends by saying they are considering a role for an advocate for graduate students with disabilities. This is exactly what’s needed. And I could do it.

The University of Michigan and others need to know they are AINO – this is my new term, maybe it will catch on – Accessible in Name Only. They opt to do the bare minimum, but what they don’t realize is that while they might not get sued, they won’t get cheered on either.

In my experience, it was hard. There was no support. I even had my dissertation chair tell me that if I went on to get a second master’s degree after the PhD, it would be viewed as a backward step. So what did I do? I did just that and I never told anyone on my committee. I told them I had to take some time and focus on my health and figure out what my next move would be. Eight years later, I haven’t spoken or heard from any of them. And it saddens me. My only crime was becoming chronically ill. Whether or not I could have made it as an academic sociologist, we’ll never know. But the reason I didn’t try is because I wasn’t encouraged, in fact, it was more the opposite. And as much as I am a fighter and the more someone tells me “no”, the more likely I am to try and prove them wrong, I didn’t have that kind of fight in me for myself.

I want to fight for chronically ill students in higher education. I want to go to battle for them like I hoped someone would have gone to battle for me. But it’s not about changing individual departments and disciplines, it’s about changing the institution of higher education. It’s about recognizing the unique issues that students with chronic illnesses and disabilities face, and finding ways to make sure they are successful in the academy in spite of that.

I wrote a letter to the Dean of Rackham graduate school to tell him how I felt about the report. I could have written the entire thing myself. I’m including it here in the hopes that someone from Rackham will reach out to me. My experience at U of M led me to Sarah Lawrence to study and focus on this issue specifically, so it’s time to take this journey full circle, back to where it started.

Dear Dean Solomon,

I am a 2007 graduate from LSA and a 2013 graduate from Rackham. During my first year of graduate school, I was diagnosed with multiple chronic illnesses. As you can imagine, this came as quite a shock to me. I was in the graduate school “bubble” and imagined that would be the main focus of the next few years of my life. Then life reared its ugly head and I became chronically ill. 

Amongst other things, I was told that I would never make it in academia and would never make tenure if I stayed on an academic track. I was also told that maybe I would be a "more empathetic sociologist" because I was sick. 

While in graduate school, I was as active as I could be in advocating for graduate students with chronic illnesses and disabilities. I still receive emails and today I read the Report from the Committee on Graduate Student Experience with Disability Accommodations at the University of Michigan in its entirety. To be honest, I could have written this report. It saddens me that in almost eight years, so little has changed and the same, if not more basic questions, are only now being answered. 

When I went to SSD, I was met with confusion. I was asking for accommodations that could potentially change often. If I was feeling good, I would not need them. If I was feeling poor, I might. I needed a contingency plan and no one was able to provide me with one. My livelihood and health insurance were tied to me being a graduate student. The prospect of becoming seriously ill and having all of that ripped away was incredibly distressing. SSD wasn’t equipped to handle that; in fact, I didn’t really find anyone that was equipped to handle my situation. When I expressed concern about my preliminary exam, which would put me in front of a computer for eight hours, the accommodation I was provided was that I could take half of it the day before the scheduled exam and the other half the following day. This was not ideal, but I had no other choice. I ended up in a freezing computer lab, and by the end of the first four hours, my joints were so stiff, I didn't know how I’d be able to walk home. That’s just one example of many struggles I faced throughout my six years of graduate school at U of M. 

I know that my situation is unique as I went from being a healthy undergraduate to being a chronically ill graduate student in the same department. But the change in faculty members’ associations with me were unmistakable and profoundly sad and disappointing. I know that being a 22 year old chronically ill graduate student was not how I had envisioned my graduate school years, but being shunned and looked down upon in the same department that awarded me the award for the best undergraduate honor's thesis, was almost too much to handle. I finished my PhD in six years and was one of the first in my cohort to graduate, knowing that if I took more time due to my illnesses, it would not have been looked at in a good light, even if my peers took longer just because.   

After completing my PhD, I went to Sarah Lawrence College and received a master’s degree in Health Advocacy, focusing on chronically ill students navigating and succeeding in higher education. I miss the University of Michigan. I miss the intellectual growth that I received. But no one empowered me to go the academic route and I was conditioned to believe that if “I couldn’t hack it, I shouldn’t be there.” 

Eight years later, the experiences I had as a chronically ill graduate student at the University of Michigan remain traumatic for me, and had a profound impact on what I have gone on to do (and not do). I do not think that this is a phenomenon unique to the University of Michigan, so please don’t take this email that way. I think this report is a good, albeit long delayed, first step. I know that many of us have watched as accommodations that we requested and were denied have been put into place for the masses due to the pandemic. We now know that what we were asking for is not so farfetched or impossible. 

I hope you or someone reads this, and I hope someone reaches out to me. The needs of chronically ill students are still unmet and I fear that by focusing on the issue solely from a “disability” lens will continue to marginalize and silence chronically ill students, many of whom may not consider themselves disabled. 

Sincerely (and in solidarity),

Leslie Rott Welsbacher, MA, MHA, PhD