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.