Inspiration Through Determination
By Matthew Rupel
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.
The cruel irony the study found that non disabled students thought that their handicapped peers were less sexually active. In turn, disabled students thought that they made bad dates.
What We Face
A set of first world and seemingly mundane problems plagues disabled students. The student in the wheelchair is always separated from the rest of the class by a row of desks. The visually impaired student can't walk to her dorm by herself once the sun sets. The student with multiple sclerosis can't take that second shot. To the outsider they seem small, but their weight starts to build when they happen everyday. Sophomore Daisy Muñoz, a partially blind college student, knows this all too well.
"You shouldn't be ashamed of any aspect of yourself, especially if it's out of your control, you know?" Muñoz pointed out to me.
Sitting across the table from Muñoz, I couldn't help but notice that she was pretty. Her skin was an olive tone and she had a way of ending her sentences with the question, "you know?" She had large round eyes - the left slightly bigger - that didn't quite focus on me when I talked. I attributed this to her vision impairment.
Muñoz tells me that ordering food is something she always does with a partner, and she often catches herself staring off when she talks to someone.
"Just little ways like that that people don't think about it," she says.
Some schools, the ones that Tiedmann calls ADA Plus colleges, cater to the less-obvious difficulties that students like Muñoz have; they have services that extend beyond the minimal requirements of Section 504 and Title II of the ADA. Colleges that offer these kinds of opportunities are few, and often, students with disabilities turn outside of their college communities for an outlet.
The San Jose Sharks sled hockey team practices on weekends at Sharks Ice in San Jose for wheelchair users that junior Scott Briody plays on.
Briody has cerebral palsy. Like me, he uses a wheelchair - although his is electric - and is unable to make full use of all of his muscles. He depletes his energy quickly, and the muscles he can use don't work as well as most of his peers.
Unlike me, Briody loves sports. He's been playing sled hockey since he was four years old. He was one of the developers of wheelchair lacrosse. He is on the board for Far West Wheelchair Sports. He loves broadcasting, particularly sports broadcasting because it's "fast paced, requires you to think on the spot and react to new developments." Those are things I don't like precisely because I'm in a wheelchair, let alone things I would expect of Briody.
His neck struggles to support the weight of his head as it rolls from side to side on his shoulders. His hands curl inward to his wrist, and he can only use two of his fingers with any accuracy, but Briody isn't sad.
And neither am I. I'm determined.
Contact Matt Rupel at mrupel@scu.edu