People are surprised when they find out I’m a college graduate and that’s a nice feeling. I want everyone in my situation to feel that sense of accomplishment.
I was diagnosed at around age 11 with Friedreich’s ataxia (FA). I need a fair amount of help in bathing, dressing, etc. I also have a pacemaker and insulin-dependent diabetes, side effects of FA, and need help maintaining them. Hence, going to college after I graduated from high school seemed like an impossible hurdle.
But a couple months before graduation, I met with a vocational rehabilitation counselor, who helped set up funding for aides, partial tuition and books. VR also helped in getting computers, software and other adaptive equipment. Taking a deep breath, I enrolled in an associate degree program at Western Kentucky Community and Technical College, and later, in a bachelor’s degree program at Murray State University.
Although I lived at home while going to school, I still needed aides to help in the restroom during the school day and with my commute to and from school, at first by accompanying me in a taxi and later by driving me in my parent’s van, which VR outfitted with a wheelchair lift.
In high school, I had taken for granted the accessibility of having an attendant available. But things were very different in college. Often, aides I hired just did not show up. They’d have smiling, gracious faces until they just didn't come. Finding a substitute when aides didn’t show up, wanted a vacation or took a different job was a nightmare.
After a lot of effort and frustration, I gave up trying to find any reliable aides for my last two semesters at MSU and changed my major, choosing one that allowed me to take most classes online. I also attended night classes, getting by with the help of family, friends and university-provided note-takers. Two years later, I received my bachelor’s degree in integrated studies in print communications.
Without VR’s help, I might not have been able to achieve this degree. However, I have a suggestion which could improve VR’s services for people in a situation such as mine.
I think an organization would have better luck than an individual in finding reliable aides. Therefore, I think VR should give money directly to the college to hire attendants, or VR should hire attendants itself. It would have been so nice to know when I arrived at school that an aide would be waiting there for me. Then I could have focused on my studies, not on looking for someone to handle my needs.