Thursday, March 26, 2009

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.


  1. Great speech, Leslie! I just remembered my first encounters with people who in my college career that had disabilities.

    I remember in the end of my first year of college, there was a friend of my friends (it was such a long time ago)... that said she had lupus. She didn't explain it at all... and all I remember thinking that it must be an STD (stupid me). Now that I have it, I wish I had talked to her more and gotten to know what was really wrong with her.

    There was another person who had a disability. I don't know what it was, but I felt, from everything she did, she was trying to take advantage of the system.

    So when (years later) I was doing my grad school and my lupus was really flaring because of this one EXTREMELY hard class (I lost so much weight over it and spent hours staying up for it. I did about 15-30 hours of homework just to do the minimum)... and that was the first time when I considered telling my teacher about my lupus... but at the same time, I didn't want it to sound like this was an excuse to get an extension. It didn't even hit me that Lupus was a disability and I had a place to go to for help.

    Now, considering doing some higher education needs lots of thinking... 'cause I can't do what I used to do in my college career... the staying up all night to finish my homework.

    Great post! Thank you.

  2. Wow! Brilliant speech, I wish I could have heard live. I too suffer but not at a diagnosed diseases, just health complications that can't be explained without medical insurance. It is hard to endure physical aliments that are undefined, people judge you as lazy or weak willed.

    It is also hard to deal with a diagnosis that most people no nothing about. I have friends with Lupus but no one comes to her beside because it's not cancer. If they can give you medicine and you don't lose your hair it must not be that serious. You are excepted to function like any normal person; anything less people look at you like you are crying wolf to get out of your adult responsibilities.

    Bravo to you for pushing yourself and succeeding without assistance that could have made your life a lot easier. I'm sure the experience made you a stronger woman; it certainly helped you to have a powerful and inspiring speech.

  3. BRAVO Leslie!!!! Excellent speech!

    I applaud you for getting up in front of a group of people and speaking about something so personal yet so very important.

    This is a subject that many more people need to be made aware of. So many people suffer from an "invisible" illness yet when they ask for help they are often offered a cold shoulder.

    I was in the medical field before I had to go on disability and my colleagues were the absolute worst at offering a helping hand when I needed it.

    One might assume that working in a hospital with other medical personnel one might get a bit of help or sympathy but the very opposite was true, they were very hard on me and many did not want to hear about my troubles. It was a terrible environment to work in.

    Again, I applaud you for your speech. I wish more people would have your courage.

  4. Thanks everyone for your kind words about my speech. I think it was an important moment for me - and I'm glad I was able to share it with all of you!

  5. I too applaud you for your very articulate speech.
    I have gone thru your blog archives and have read a lot about what you have experienced, felt etc.
    I have wiped many a tear while reading what is actually so much of my life also.
    I worked as an ICU RN for over 30 yrs and eventually had to "retire". I worked for about year after diagnosis part time with hopes to work up to full time. My co workers were generally non supportive as was my manager. It seemed that they didn't "get it" and in looking back I don't believe that any of them have the capacity.
    Like you, I am a very emotional, empathetic, kind person and many times was the one who was sought out as a listening ear. When I needed it it was no where to be found.
    I believe that the way I was mistreated at my job pushed me into a worse situation requiring that I quit working and seek disability.I feel that if my employer had been more helpful and understanding I'd possibly be working today.
    I can understand your frustration with the university and the pressures put on you. My husband works for one of the big ten universities in Indiana and told me to remind you that universities receive federal funding and they frown on universities being discriminatory. Someone who is disabled may have to be given extra consideration. I know how it is though, fighting the fight for yourself many times causes more stress and flares in the long run.
    I wish you the best. I so enjoy your blog and can so relate to it.
    I was diagnosed with lupus 6 yrs ago and have had CNS involvement.
    I was 49 when my first lupus flare occurred so I'm old enough to be your parent.
    Again, I wish you the best and I am sending good thoughts your way!!!
    Carol Adams in Indy