Disability Discrimination

I chose a family member of mine to conduct the interview related to disability discrimination and living with a disability. The individual I chose to speak to was my uncle ISSAM. Although I have always known and been in contact with my uncle, through this interview I was able to learn much more from him about his personal life and past. The following information was all obtained after writing down all of the information I was able to obtain from my uncle. ISSAM is the youngest of my father’s siblings and is actually quite young still. He is in his late thirties and lives alone in Virginia where he works for the federal government. ISSAM is quite content and successful in his life having graduated from the University of Maryland and settling in the Washington D.C. area after graduation. He was born in New York City and moved to Maryland with my father and his family when he was quite young. ISSAM currently lives alone and has no children, but does have the support of my grandparents as well as his siblings who are all in the Washington D.C. area. Growing up near the nation’s capital my uncle hoped to attend one of the universities in the D.C. area and work for the federal government in some manner.

The first step to this goal was obtained when my uncle graduated High School and was accepted to the University of Maryland. ISSAM was a Criminal Justice major and worked at school and at internships to work towards being recruited for a federal government job. My uncle lived at home and commuted to his campus each day that he had class, and worked part time and went to internships his days off from class. Overall, he was active, engaged and energetic during his time at the University of Maryland.

My uncle ISSAM developed Guillain-Barre syndrome unexpectedly early in his life. This disease is rare and affects very few people every year. The lack of steady cases has made it hard to develop enough research into the particulars of the disease, and therefore many questions are hard to answer for those affected. Guillain-Barre syndrome affects very few people under the age of thirty, and this happens to be when my uncle contracted the disease. In his junior year at the University of Maryland, my uncle became very ill and weak suddenly and without warning. The few days of illness led to an increasingly numbing feeling in his legs that slowly led to a weakening of his upper body and arms as well. After much debate and agitation, he was taken to the local hospital without his approval.

Apparently, my uncle believed that his symptoms were due to nothing more than dancing too much over the weekend. Luckily for him, my grandmother disagreed and took him to the emergency room. While there my uncle was lucky enough to come across and ER doctor who was a specialist in this particular disease, even more amazing considering the rarity of this syndrome. The quick diagnosis led the ER doctors to immediately transport my uncle to Johns Hopkins Hospital in Baltimore, MD for further assessment and treatment. According to my uncle the best that could be done to “treat” the disease was done, but there is no real cure or universal treatment for the syndrome he contracted, nor is there a clear answer as to why he developed it. His disease could have led to partial paralysis, full paralysis, permanent coma, or even death. My uncle feels lucky that due to insightful and quick doctors and having access to one of the best hospitals in the country, he was treated successfully. He was able to retain the use of his arms for the most part and was left without the full use of his legs. For him, this was, and continues to be, a triumph. The initial experience was a frightening one and stressful for my uncle as well as his entire family. My uncle worked very hard to regain strength in his arms and still continues to work every day on attempting to rehabilitate his legs. This was, and continues to be done through medication and physical therapy. Physical therapy is the most positive and helpful tool to improving life, according to my uncle. He stated that this is because it gives him an outlet to continue on working on his coordination. To this day, my uncle must rely on crutches, walkers and the help of others. His legs cannot support him anymore and although his arms are mostly strong, they cannot support him in all of the tasks that he was once able to do.

The most difficult time of my uncle’s life was his initial diagnosis with Guillain-Barre syndrome. It was a life altering time in his life as well as that of his family. He stated plainly to me that he did not know if he was going to live, and that if he did, he was not sure that he would want to. The initial shock was mitigated for him when he was able to retrieve some use of his arms, something that improved with time. After he was released from the hospital, he was put on an extensive physical therapy regiment. During the initial stages of the illness my uncle told me that he had his siblings get in touch with his professors to relay the message of his illness. Initially these professors were understanding as was the university. As the illness spanned over the course of weeks going into months, the professors stopped their leniency and understanding. This led to the biggest realization that the illness would affect his life and that things would be harder for him in some ways. I asked my uncle if he was aware of the ADA back then and if the school was making any specific effort to accommodate him. My uncle was not aware of anything of the sort and was not in any talks with the university to receive assistance. He believed that all he could do was ask the teachers for extensions for papers and assignments and nothing more. This all led to him failing nearly all of his courses that semester and eventually having to graduate a year later than he was expected to, and with a much lower GPA. My uncle does not however feel that he has ever been discriminated against. An important thing that he needed me to be aware of was the fact that even though he cannot use his legs, he has never considered himself disabled and still does not. To him the ADA, and discrimination based on disability do not apply to him because he is not disabled and therefore not in that category. When I attempted to speak to my uncle about the ADA in any detail he dismissed me and moved onto another topic. This experience with school was the most difficult time in his life, but he did not attribute that to his “disability”. To give a clear picture of my uncle’s feelings towards his inability to walk on his own he told me a story relating to a few months into his initial physical therapy. My uncle insisted on going for a walk around a lake close to his parent’s house at the time with my aunt (his sister). While walking my uncle tried to walk without his crutches and fell on the ground and could not walk. My aunt had been walking ahead for some time before she realized that my uncle was no longer next to her. She ran back to find him and saw him crawling on the ground. When she got to him she asked why he had not said anything and allowed her to keep walking. He told me that he told her this was nothing he needed help with so he didn’t ask for it. My uncle understands his limitations, but he never has, and never will consider himself disabled, or in need of help.

As I mentioned before, my uncle never felt that he was specifically discriminated against due to a disability because he never considered himself disabled. When meeting with him to start the interview, I was reminded of the 2nd commandment in that he did not hesitate to get up and attempt to shake my hand, even though it is difficult for him. I remembered that offering to shake hands was one of the minimum acts I could do and that there was no need to create awkwardness, where there was none. The third amendment came into the meeting as well when I offered my uncle help at a few points when he needed to move around, or get a drink of water. I offered my assistance and made sure to hear his response before beginning to help him. This was very important, because my uncle refused my help each time I offered it. Had I started to help without waiting for his response, it would have created a sense that I did not see him as able. He is now a successful man who eventually finished his B.S. from the University of Maryland, and even went on to receive a J.D. degree as well. He achieved all the goals that he had for himself before the onset of his rare illness, and even works for the federal government like he always wanted to. What I learned from him during this interview was that what he wanted the most was not to be seen as “disabled”. This is the one lesson that taught me that my belief that adults with disabilities welcomed protections was incorrect. I believe the best thing I could do for others is to see them the same way I like to be seen myself. I like to be seen as a whole person and not for little pieces of me that fit into categories. My uncle told me at one point that the things that helped him feel best during his illness and slow recovery, was that his friends never treated him like he was sick, but carried on as usual with him and he appreciated it. My uncle has a full and successful life and all he wants is to be seen as a successful person, not a person who is successful despite his “disability”, a word that I feel less comfortable using after doing this interview with him.