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:

https://rackham.umich.edu/downloads/grad-student-disability-accommodation-experiences-umich.pdf

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

Being Chronically Ill In The Age of COVID-19

(https://nypost.com/2020/05/20/end-new-york-citys-lockdown-now/)

I happened upon the May 23, 2020 issue of the New York Post and was greeted with “One Man’s Plea” regarding re-opening New York City, the crux of which was, “The elderly and infirm can continue to be isolated,” but the quarantine must end for everyone else.  

This trope makes me so angry.

Why is this narrative okay? Why is this thought process okay? Because we’re useless? Because our lives don’t matter? What I’ve learned from this pandemic is that a lot of people lack a sense of social responsibility. It should not be every person for themself. Like refusing to wear a mask because it may make you physically uncomfortable temporarily. But it may also save other peoples’ lives if you are asymptomatic but have COVID-19. Everyone’s actions in regard to this virus have consequences on other people. It’s not just you endangering your own life.

While I have been very much in support of the Governor of Michigan throughout the pandemic, I am somewhat dismayed at the lack of effort that has been put forth regarding at-risk populations.

Did you know that in the Governor’s plan for re-opening Michigan it is strongly suggested that at-risk people shelter-in-place through Stage 5? Stage 6 is post-pandemic. As in, there is a vaccine. Best case scenario, that’s six months away, but more than likely that’s 18 to 24 months away. And that’s really only if it’s not a live vaccine because that will mean that many at-risk individuals, including myself, won’t be able to get it. And that would mean that everyone who isn’t at risk that is already calling the vaccine “the government’s excuse to microchip us” would have to put their theories aside and get vaccinated for the sake of others, because many of us who would get it won’t be able to.

I’m sick of the crying and bellyaching about how people are minimally inconvenienced by wearing a mask. I’m angry that a lot of people are willing to throw away the lives of others. The “why should I give up my freedom for your life” is more “why should I give up my life for your freedom.” But really, it’s a false dichotomy. Such questions and decisions diminish us all. It is inherently ableist to think that the “elderly” and “infirm” can be thrown away.

We’re being forced, not into institutions, but into our own homes, where it is presumed we will stay and be quiet until the appointed time it is designated safe – if that ever happens – for us to re-enter the world. But we all have lives that exist outside of the four walls of our homes. And those lives are vibrant, valid, and as important as any one else’s.

So while I’m happy that everyone else’s life is opening up, restaurants and bars are re-opening, I’m sorry to say that I won’t be going. Because the reality is, the only one who is going to keep me safe is myself. And for now, that means staying at home.

***

As of this writing, the guidelines have changed. But at-risk individuals should still practice social distancing and wearing masks, while apparently no one else has to. Staying home is safer. Now we have a target, not on our backs but on our faces. This everyone-else-can-go-about-their-business is bullshit. And it’s tacky. The state basically re-published the guidelines and plastered on it “Reopening programs and services for older adults age 60+ and vulnerable individuals with underlying health conditions.” This isn’t progress, this is politics.

And we weren’t asked. As far as I can tell, no patients or doctors were consulted in this decision-making. And we deserve a place at the table. No evidence has been provided. And maybe there isn’t any, but if there isn’t, that should be disclosed. “We have no evidence to support our poor decision-making. Consult your health professionals for guidance.” Whatever. That’s better than what we’ve got. And what we’ve got is nothing. If, after careful thought, consideration, and planning, it is still deemed that the most realistic option is to shelter-in-place as much as possible, I will take it. But I cannot and will not accept no effort or thought being put into this decision.  

The reality is, this pandemic has brought into full relief the injustices that have always existed in this country, where minorities of any kind are at higher risk for worse outcomes of everything, including COVID-19. And as the last several weeks have shown time and again, at risk of death from many things other than deadly diseases, simply because of their minority status. 

So if this feels like a kiss off, it probably is. As I railed against this to a friend who is not chronically ill, she said that the state should have just put a post-it note on the document that said “be careful, good luck…” It’s basically akin to “stay safe out there.”

This is a failure of epic proportions. It’s not just a healthcare system that was unprepared, it’s a government that has been teetering on the brink for longer than we’d like to admit. It’s that America has never had a good safety net in place for the most vulnerable among us. And to think that altruistic people will remain so when they are out of work and struggling themselves is completely unrealistic and puts the blame everywhere other than where the blame should be.

So before newspapers like the New York Post give front-page status to a whiny baby, maybe they can make room for the people that need their voices to be heard. Maybe someone, for one minute, can try to understand that while I am lucky to have a home that is livable and clean, has functioning utilities, and is safe, being at home indefinitely may not be the best option, physically or emotionally, for me or any other high-risk person.

Ultimately, it’s about what we are willing to accept, as individuals and as a nation. Mitch Albom wrote more eloquently than I ever could about “acceptable losses” and how much we are willing to lose for the freedom to leave the house and move through society unfettered while the pandemic rages on, whether we want to admit it does or not (https://www.freep.com/story/sports/columnists/mitch-albom/2020/05/27/mitch-albom-coronavirus-100-000-covid-19-memorial-day/5251822002/).

Truly, I have very little desire to be anywhere but home right now. It’s not that I don’t yearn to get back to my life as it was before March 13, 2020. I do. But right now, everyone is a threat, those wearing masks less so than those who aren’t. I will live in a bubble that I didn’t consent to.

My chronic illnesses have morphed into something that I clearly haven’t accepted because in 12 years, with the exception of once, I’ve never had to accept this kind of personal protection. I never signed up for being chronically ill meaning that I’d be afraid to leave the house and I’d be afraid of every single person that I came in contact with. I never considered that what could be floating around in the outside world could be worse than what was going on inside my body. And I never expected that when everyone had to be weary of that threat that the resounding response would be “Not me. It’s not my responsibility.”

Because we know that “The elderly and infirm can continue to be isolated” isn’t just the plea of one man, but the plea of many.

Town Hall Speech

What follows is a speech I gave tonight at a town hall meeting about disability and access put on by the Graduate Employees Organization (GEO) Disability Access Committee, of which I am a member. As I indicate in the speech, this was the first time I have spoken to a group publicly about my illnesses…

I graduated from the University of Michigan in April of 2007 and was set to start the Sociology PhD program in the fall. While I thought that there was nothing to possibly derail this plan, I was very wrong. Throughout my senior year of undergrad, I had repeated strept throat and pink eye infections, bizarre stomach bugs, and the telltale muscle and joint pain – at first only after I worked out – then eventually, the pain never went away.

While I was able to start graduate school in the fall of 2007, my whole world quickly fell apart. I was in pain all the time and had unexplainable symptoms that would come and go in the blink of an eye. I had to go to several different doctors before I was able to find someone who took my concerns seriously…

In April of 2008, I was diagnosed with lupus and rheumatoid arthritis. While I struggled with frequent doctors appointments and medical tests, and not feeling well, I also struggled with what these illnesses would mean for my graduate school career, and more broadly, my life. Simply asking my department for symbolic recognition of the situation and its varied consequences was met with resistance and unease. I felt like I was met with the implicit charge that:

If I couldn’t cut it for any reason, I shouldn’t be here…

This journey has been fraught with failed attempts and missteps. The tangible changes, in many ways, remain to be seen. I know that my situation is unique in that it started while I was in graduate school and that I have a set of very unpredictable illnesses. But should you become a player in this game, or if you are already in it, you probably know, that it is not for the faint of heart.

Still, as I’m sure there are many others out there, as well, I mostly suffer in silence. As my cohort mates celebrated the end of our first year of graduate school last April, I was at the hospital receiving outpatient intravenous therapy. A stark contrast to the 22-year-old, graduate student life I thought I’d be living. It is only a recent innovation that I don’t rush to the bathroom to take my medication five times per day so that no one has to watch me pop pills and wonder why.

There is no doubt that illness is a lonely pursuit. It is isolating. It is a litmus test for friendship. And most of all, it is exhausting to wear the brave face all the time and have everyone around you be none the wiser. This is especially frustrating that when you do ask for help, you are met with ambivalence, and sometimes, downright nastiness.

It is ironic that those of us who are sick and tired, who are the most vulnerable, are expected to lead this fight on our own. As sociologist C. Wright Mills wrote in 1959:

Men do not usually define the troubles they endure in terms of historical change and institutional contradiction [...] They do not possess the quality of mind essential to grasp the interplay of man and society, of biography and history, of self and world. They cannot cope with their personal troubles in such ways as to control the structural trans-formations that usually lie behind them.

The truth of this matter hinges on Mills’ words. This personal problem, of illness and disability, is in fact, very much a public issue – even for those of us with invisible illnesses and disabilities. And until it is seen as such, the individuals that sit before you tonight will daily have to battle in order to gain the recognition and help they deserve.

*****

As I expressed earlier, while individual action and change are important, the difficulties incurred by Katie, Walt, and I point to much more deeply imbedded, systemic issues, issues that will not be surmounted by individuals alone.

There are many matters that still need to be resolved. People are often hesitant to attach labels to themselves or to be open about such issues. While I have become adept at talking about my illnesses, this is, in fact, the first time I am publicly disclosing them in a forum such as this.

At the heart of the matter, is often that people do not stand up for issues that do not directly involve them. As journalist Richard M. Cohen wrote in Strong at the Broken Places: “Know this. Ninety million Americans battle chronic illnesses everyday. Welcome to your future.”

While this statement may sound harsh and threatening, it is the truth. Although chronic illness and disability may not be on your radar screen today, they may be your reality tomorrow. That was the case for me. While disability issues were in the back of my mind, I never expected them to become “my” issue. But now that they are, I hope that with the help of others, something good can come from my experience.

What is truly needed, then, is a network of students who are disabled, chronically ill, or are aware of the importance of such issues, not only to those who are directly affected, but to the University community as a whole. We all deserve a living, learning, and working environment where we feel accepted and appreciated, and where our voices are heard, not because we are alone, screaming at the top of our lungs, but because there is a chorus of voices harmonizing together.