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Tuesday, October 4, 2016

Rejecting Super Crip Stereotype: The Ordinary is Impossible

I have become a weekend warrior. Less than 10 minutes from my home is the Onondaga Bike Trail. I ride my handcycle around the lake. Google tells me Onondaga Lake is 4.6 miles long and 1 mile wide. I do not as yet own an odometer so I am not exactly sure how many miles I have been biking. Suffice it to say I am chewing up some serious miles. I learned this just yesterday in large part because it took me ten minutes on the interstate to locate the end of my route. Regardless, when I start out on my bike I crank as hard as humanly possible from the start of the trail to the end. I pass all sorts of people: families ambling slowly along, a sea of joggers, and when going flat out I pass other bikers. Believe me a handcycle can go fast and far. On my rides I thoroughly enjoy myself.

The down side to biking are the inevitable and unwanted comments. Everyone has something to say to me. I get it. A recumbent bike is out of the norm. A handcycle is even further out of the norm. People are inherently curious and difference attracts attention. What I have quickly learned is that stopping is a bad idea. People are eager to engage me. I have no interest in engaging others. The exchange is always the same: "Wow, that is such a cool bike" or "You are amazing!" or "I see you every weekend--remarkable" or "You are inspiring" or "You are so cute on your little bike" or "You need a horn" or "You shouldn't be allowed on the trail". These comments and others reinforce the idea I am inherently different. Idly stopping and having an ordinary conversation simply does not happen. I am also at the center of many passing conversations. Almost all those conversations revolve around how "amazing", "cool" or "inspiring" I am. I despise this. The reality is I am an average middle age white male who wants to enjoy being outside biking. There is not one remarkable, amazing or inspiring thing about me. I completely and utterly reject the super cripple narrative. I have not overcome paralysis. I have adapted to paralysis. I have not through sheer willpower and hard work overcome my disability. I have adapted to a world indifferent or flat out hostile to my existence. I am not the poster image of disability nor do I represent all disabled people. I am merely one man.

What the super cripple notion makes me is different. It forces me to be the other. The other can easily be turned into a stereotype. In my case, when I bike I am a triumphant figure. This incorrect belief only perpetuates the stigma associated with disability. It is inherently damaging because the flip side to this coin is that I make other people with a disability look bad. They are not triumphant figures. No sir. They are lazy and unmotivated failures. In individualizing disability it is all too easy to ignore or dismiss what is obvious to me: the constructed world is not made with cripples in mind. Barriers abound in the form of ableist bias that is woven into the fabric of society. I am repeatedly told that wheelchair access is very important and that inclusion of others is critically important. These are easy words to utter. Reality is different. For instance, Syracuse University constructed a multi million dollar promenade as part of its long term campus framework for the future. The promenade, a central feature of campus, has made the campus less accessible. When wheelchair users strenuously objected to the inclusion of multiple stepped tiers bipeds were shocked. At a recent meeting I stated that "the promenade project is a symbolic fuck you to every wheelchair user".  My statement was viewed as harsh. This is correct in a way: life as a wheelchair user is indeed harsh. My life and the lives of others with a disability is harsh because we are socially, economically, politically, and practically discriminated against on a daily basis.

Strangers are not intentionally demeaning me when I ride my bike. They want to feel good about the world. We Americans love stories of overcoming adversity. I am in the estimation of the bipedal hordes that surround me a classic over achiever. I have triumphed in the face of disability. Bull shit. Yes, I have worked hard but what I have overcome is a social system that plays lip service to the inclusion of people with a disability. Bipeds and those that do not live in the land of disability ask all the wrong questions. Instead of deeming me a super cripple and being awed that I am doing the ordinary typical others in an effort to feel good are only further alienating me. Bipeds just don't get it. There is a cultural divide that they do not even know exists. The real reason you do not see people such as myself biking is because handcycles cost a fortune. All adaptive sports equipment is ridiculously expensive. A ski rig costs thousands of dollars. The same can be said of handcycles. At the well-known website,, one can purchase a hand cycle that can cost upwards of $10,000. Entry level racing handcycles start at $5,000. These prices preclude almost all people with a disability from participating in the ordinary. Yes, adaptive sport programs abound. Special adaptive events are held nationwide. All this is wonderful and I truly support adaptive sport programs. Here is the proverbial but. What sort of message are adaptive sport programs sending if participants cannot afford to own adaptive gear such as handcycles or a ski rig.  Are we people with a disability relegated to special events just as we are relegated to special education, special buses and special transportation? What about family life for a parent with a disability? You are married and have a child. You are one of the few people with disability who are employed and have access to mass transportation so you can get to and from work. You want to bike on the weekends with your child. How many families can spend $5,000 on a handcycle or the same amount on a ski rig? Virtually none. The ordinary is never really ordinary for my people.

Brilliant adaptive design exists. Your average cripple can look at such designs but almost all cannot afford such design. For a mere $10,500 you too can own the Carbonbike Evo Jet.

How about a Panthera X wheelchair? This carbon fiber framed wheelchair costs about as much as a brand new Fiat.

How about a racing wheelchair? This beauty can be had for just $3,300.

Let's do a little math. Every day wheelchair of my dreams--$12,000. Hand cycle, $10,500. Racing wheelchair, $3,500. Ski rig, $5,000. That adds up to a very expensive $31,000 if my math skills are up to par. I understand top of the line design is expensive. I also know we live in a capitalist system and that without profit margins excellent design and innovation wouldn't exist. But at what expense to others, in this case crippled others, is acceptable. There are profound economic reasons why I am the only weekend warrior riding a handcycle. There were a myriad of reasons when I got my degree at Columbia University that I was the only wheelchair user on campus. There are reasons why I know no other fathers who are paralyzed. I find it distressing that I am the only faculty member that is paralyzed at Syracuse. I am appalled that all my students answer no when I ask them if they had ever had a wheelchair user professor. I have been asking this question for 25 years. This is what bipeds don't get. The reason wheelchair users are virtually invisible from the work place and routine social interaction is because the social system and our constructed environment present barrier after barrier to inclusion. Ableism is ever present. I see it but typical others do not. They see a super Cripple. Sorry but no. I forcefully reject that label. I am simply lucky. I had great parents who insured I had every opportunity to live a rich and full life. Shortly after I was paralyzed I knew the world was hostile to my presence. That hostility has not appreciably changed in the last 35 years. Education my father told me was the key to success. Well, I got a world class education and have had led a good life as an academic or public intellectual. Life however has never been easy. I have struggled greatly in terms of employment as the university system nationwide has embraced a business model of education. We live in an era in which the University of Iowa hired Bruce Harreld as president--he of Boston Market fame with no experience in higher education. Other examples abound.

Think about how the ordinary is impossible. Recently I met a visiting graduate student from abroad at Syracuse University. The student wanted to do something ordinary. She wanted to try to ride a handcycle before the weather turns too cold. Now if this student did not have a disability she could have gone to the Onondaga bike trail, downloaded an app and rented a bike for $10 for one hour.  This is what any biped could do without thought. Indeed, any biped could do this each and every time they go on vacation. Enter the need for a handcycle and the ordinary is not possible. I could not find an adaptive sport program that could lend the graduate student a handcycle. It is my hope the student can participate next spring in an adaptive event and access a handcyle. This special event will surely inspire the bipeds who happen to be outside that day just as I inspire people I pass every weekend. To say I am frustrated is a massive understatement. 26 years after the Americans with Disabilities Act was passed into law the ordinary remains impossible.


Dave said...

usually I am opposed to using the term 'truth', however in this case I feel you have truthfully hit the proverbial nail on the head! I am often considered a 'super quad' but in reality i'm just fighting several institutional barriers at a time. Your comment about being 'lazy' also struck a note as my own family called me lazy when I quit working with them. They saw it as me not working hard enough - but I quit because of the challenges and the constant time/energy battle to play on the bipeds capitalistic inaccessible playing field.

Wish I had a ski rig and a carbon fibre chair! Brilliant article.

william Peace said...

Dave, I wish I could afford a carbon fiber wheelchair and a ski rig. Alas those pricey items for a tiny number of uber wealthy cripples. Glad they exist but for we mortals they may as well be located on the moon.