Strength in the Midst of Discrimination
Guest Zine by Kristopher Sutter
“One day everything will be well, that is our hope. Everything's fine today, that is our illusion.” -Voltaire
As a teenager I developed an affinity for social change. I studied Saul Alinsky, Martin Luther King Jr., and others that developed strategies to improve the lives of groups and individuals. I entered college wide-eyed and seeking to change the world. I knew - and still do hope - that people treat each other with dignity, and respect each other for our differences.
I was diagnosed with Crohn’s disease in my first year of college. I had no real idea the impact Crohn’s disease would have on my life. I remember telling my parents and friends the diagnosis and in their search to try and understand they associated it with the flu. The physical symptoms included cramping, intense stabbing pain in my abdomen, stomach and joints, fevers, vomiting, diarrhea, occasional blood in my stool, and fatigue. The medications to treat the illness could sometimes be even worse. Medications like prednisone resulted in bone loss, irritability, depression, anxiety, and weight gain. I weighed as little as 145 pounds at 6 feet 3 inches tall in my second year of college.
In the end everyone always associated it with me doing something wrong. I was the problem. I wasn’t sleeping, eating the right foods, or exercising enough. My journey with this illness led me to study more about social change. Being the only person under 65 in a medical office opens your mind, gives you empathy. I had a relatively good childhood (I was often poor, but never suffered without necessities), a decent moral compass, and intelligence. I imagined how hard it could be for people without the advantages I had.
I learned how drugs and alcohol, depression, PTSD, poverty, and health issues affect individuals. I was committed to helping others, and to try and make an impact in my community. I volunteered at homeless soup kitchens, helped to write grants for substance abuse housing initiatives, and fostered community inclusiveness through pot-luck socials.
I remember one time I went to the emergency room for a flare up. The doctor thought I was just another young, Appalachian male seeking to get a fix of pain relievers. I was so angry that night, discharged without so much as a steroid injection or IV fluids, sent home to wait out the incredible pain by trying to sleep, trying not to move. Two weeks later I broke my foot and returned to the same hospital, with the same doctor from my last visit. He walked in and wrote me a prescription for pain medication. I was appalled. I took his prescription, ripped it up. The pain in my foot was nothing compared to the pain that I had suffered a few weeks earlier from Crohn’s disease. I advocated for myself with hospital administration who eventually formally reprimanded the doctor. The small fight contributes to social change.
When I finally put weight back on I started to abhor the comments I would receive, implying that because I looked well, I couldn’t actually be sick. I was struggling with all the symptoms of this illness everyday - physical, social, and mental symptoms that come along with an invisible illness.
At another time in college I had an accident because the teacher said we couldn’t leave the room or fail. I tried to hold out, but couldn’t make it to the restroom in time. I was so embarrassed. Another time, a professor enforced (despite my pleas for alternative arrangements through the Office of Institutional Equity at the university) that I take a final exam with the rest of the class or fail - because I looked fine. I showed up of course, but when I finished with the test I was brought to the hospital.
After graduating, I attempted to go to graduate school. Unfortunately, I couldn’t figure out how to navigate the grueling schedule, and once again, despite being “protected” by the Office of Institutional Equity, I had to drop out. The University failed me - not in classes - they didn’t protect me from failure due to disability. I left depressed, frustrated, infuriated that this illness was holding me back. My mind has always been able, but my body has not.
Eventually I got a job at a correctional facility as a social worker. I worked hard. I was 25 years old, but had to have surgery. I remember the day of the procedure, my father driving me to the hospital, bad eyesight and all. I was more scared of the trip than the pending surgery. I learned over time that putting on a brave face for others was what was most required of me with this illness.
I woke up on the surgery table in the middle of the procedure. The anesthesia had worn off. The anesthesiologist had left to have a cigarette. I had to wait about ten minutes with people holding me down, trying to calm me, and was eventually given an epidural. It was hard being in the hospital. Pain medicines are given at a minimum due to the need to get the bowels to move, and oh how I wanted to get the feeding tube out of my throat!
I healed and returned to work, and decided that I wanted to try again to get my master’s degree in social work. I got a 4.0 GPA, earned honors for research and clinical endeavors, and created several research projects and papers that led to grants and other resources for our small community.
I was forced out of my next job due to my Crohn’s disease symptoms. I simply couldn’t drive all over Appalachia like they requested of me because I needed a bathroom too frequently, couldn’t eat, or got dizzy from excessive dehydration.
I retreated into a depressed mood for several months after losing that job. I was in a lot of debt and had no way to make a living. Eventually, I was able to get hired on at the Department of Veterans Affairs. My boss herself had Crohn’s disease and was a constant source of inspiration who helped me to push forward, growing my skills along the way. Years later, after additional struggles, I transferred my job from a VA in Ohio to a VA in Georgia. Almost immediately upon arriving in Georgia, the relationship I transferred my job for disintegrated due to the stress that Crohn’s disease caused. I was completely alone in a new state without a single person to rely on for support. I pushed on. I slowly gained friends and the confidence of my employer, and was promoted twice within a two year period. Crohn’s disease eventually caught up to me again, and after using all of my FMLA hours for the year, I was given the option of being disciplined and fired, or apply for medical retirement. The government organization, which is supposed to adhere to the law of the U.S. Government, refused to grant me reasonable accommodations despite Crohn’s being protected under the Americans with Disabilities Act.
I found myself clearing out my office, telling my supervisees goodbye. Heartbroken and defenseless. ADA laws usually rule in favor of organizations, and for individuals in management positions, because of the perceived necessity of a manager’s presence. I couldn’t drive to my job and they wouldn’t allow me to telecommute. I had tried previously to utilize a car pool van that could have been used to get me to my job, but that plan failed because people in the car pool van did not want to leave earlier to accommodate my condition. I felt discriminated against, totally and conclusively, and was without any legal recourse. Social security denied my claim, stating that I could work doing something, even though the organization said I couldn’t work in any capacity; both are government organizations making different statements. Unemployment denied me, stating I was still an employee. Recently, I have been told that my case through the VA was denied because it didn’t meet initial requirements ... no explanation yet given.
I know this disease is hard on everyone in my life, but my wife, my family, and my close friends don’t let me feel the burden alone. I am lucky like that I focused on what I could do. I started my own business providing therapy. I have focused on building community stewardship through offering support groups for IBD, building membership one person at a time. Our hope grows with each person that joins who has an invisible illness, or who is a family member that supports them.
Other initiatives I am leading include developing improved protocols at physician offices to enhance the patient care experience. I have also started volunteering for a judicial review board to help children in unfortunate legal situations with their parents get on the right track. I’m trying hard to continue to be that wide-eyed college student who dreams of a better world. I will continue to do everything I can to support any organization, any movement that fights or brings awareness to struggles and rights of individuals with invisible disabilities.
I am broke financially, but not broken mentally, and I will not lose my strength in the midst of discrimination. For anyone interested in helping society lift its illusion, support the Invisible Disability Project and its allies to make this world a better place.