Inspiration Through Determination

I’ve never met this guy in my life. Let’s call him Steve.

He’s standing above me and staring down at me with tears in his eyes. He’s holding a Coors Light in one hand and his other arm is outstretched so he can touch my shoulder.“You are such an inspiration, man. Despite all you’ve been through, you’re still out here with us!”

When you’re in a wheelchair, it doesn’t seem particularly difficult to inspire people. People are amazed that I can still breathe, let alone go to college. If I were to take all of the speeches I’ve heard about how miraculous I am, I would think I could walk — or more accurately, roll — on water. Alcohol seems to amplify this effect.

Steve’s only trying to better understand me, and he isn’t being rude or saying upsetting things. He’s just a slightly drunk freshman who’s getting on my nerves. I wish Steve would stop touching me but, at the same time, he’s the only one at the party who seems to acknowledge my presence. Most conversations are happening two to three feet above my head or at the beer pong table no one invited me to. I’d say no anyway, beer pong is stupid, but still.

This is the disabled college student’s dilemma. Should I wholly and completely accept that I’m “different” and choose to be some shining example of what the kid in the wheelchair can be? Do I try and abandon this huge part of me and force myself into situations that were clearly not designed with me in mind? The disabled student has to deal with eyes that stare at the back of his head, existing in both the spotlight and on the fringes of the social life.

Steve wasn’t wrong to notice the uniqueness of my presence at the party. According to data from the 2010 U.S. Census, there are 19.7 million college students in the United States, and only 1.1 million of them are physically disabled.

Some of us will roll into class on wheels. Others bring a tape recorder because they can’t write anything down. Some are led to a seat obscured by the haze of a vision problem.

Sometimes a student might be late to class because he has no muscle tone below his knees and his pace is slower. A student might have to miss class due to a missed injection. Another might not have her homework ready because she was at her doctor’s office the entire day before.

The disabled student also might be heading to wheelchair ice-hockey practice. She could be getting ready for a date. We might be running the school newspaper.

The average disabled college student — if there really is an average — is trying to live her life, just like any college student.

My Story

As one of the 1.1 million, I face a balancing act everyday. What’s ironic is that my disability literally makes balancing harder and harder for me everyday.

I was born with Friedreich’s Ataxia, a progressive neuro-muscular disorder which affects one in 50,000 Americans. It causes my nervous system to decay so that over time my brain can’t communicate with my muscles, essentially making my body think it’s constantly drunk, without giving me the misplaced self-confidence to approach any girl I see.

My family couldn’t quite tell anything was up throughout my younger childhood; I was simply nicknamed “Klutz.” I received an official diagnosis in middle school, but it wasn’t until my junior year of high school that my perpetual drunken swagger made me require a wheelchair. My slow physical transition was accompanied by a parallel mental progression in how I understood the way a disability affected my life. The pieces of my understanding bear an eerie resemblance to the five stages of death: denial, anger, bargaining, depression and acceptance.

Except the last piece of the model, acceptance, is a fiction. Instead, there’s a grim determination. I both hope for a better tomorrow while I accept that it will only get worse. I am deeply saddened at the direction my life has gone, but I wouldn’t trade myself for anything. I am furious with whatever caused this to happen in my life, but I am thankful for the drive it has given me. The reality of it stares me down everyday, but it can’t consume me.

ADA Law

The law requires schools that receive federal funding — virtually all of them — to provide a limited number of accommodations to students like me. Schools must provide reasonable access to all programs offered, according to Section 504 of the Rehabilitation Act of 1973. For most colleges, this means offering services such as note takers in class, including special desks that a wheelchair can be seated at, and extended time on tests, according to Chris Wise Tiedemann in her book, “College Success for Students with Disabilities.”

Accommodations, however, are only required to give disabled students access to those programs that other students participate in: classes, student organizations, etc. I’ve noticed that they do not give an opportunity to be fully integrated into other parts of the college experience, like parties, concerts or managing social life.

Nor are there many ways established for the non disabled student to develop an understanding of his peer in the chair. In fact, the lives of the physically disabled don’t seem to attract much attention. Almost all of the academic studies I found on the physically disabled were published around the passing of the ADA laws in 1990. One study focused on the dating habits, determining that disabled students were a lot less likely to get a date.