Pardon me if I do not wax nostalgic about the olden days. The olden days were ripe with disability based discrimination. Lives, careers and dreams were shattered on a regular basis. I came of age before ADAPT and well before legislation existed to empower people with a disability. I was continually barred from participating and attending many public events in New York City where I came of age in my 20s. Concerts at Lincoln Center or sporting events at Madison Square Garden were grossly inaccessible. At old Shea Stadium handicapped seating was behind a chain link fence next to barely functional toilets that stunk of urine. Using a wheelchair guaranteed the worst seat at all venues--disability was ghettoized. This was not a New York City problem--the presence of people with a disability was an affront. By the late 1970s and early 1980s we anonymous people with a disability had reached a saturation point. Countless people had enough and pushed back. I was among those that pushed back. I had it easy--I was among the 1% and privileged. Sure I encountered disability based discrimination on a regular basis but I was not fighting to get out of a nursing home. I was fighting for the right to privileged activities--going to college, graduate school, and, for a while in my early 20s, to participate in road races. I was interested in marathons. Racing wheelchairs were about to be developed. The wheelchair industry was about to radically change and adaptive sports was in its infancy. I was an early pioneer in wheelchair racing but I was truly a peripheral figure. I was an ordinary young man who simply wanted to stay in shape and see how fast I could cover some serious miles. I was not a serious athlete nor was I designing adaptive sports equipment. I wanted to be a scholar and remain in good shape. To this end, I tried to enter New York City Road Runner events. Here I hit a veritable brick wall. The founder of the New York City marathon, Fred Lebow, hated the idea of wheelchair participants. For years the NYC Road Runners club fought tooth and nail to exclude wheelchair racers. Lebow, at a notorious closed door meeting, supposedly said with ferocity that he would not allow the marathon to be turned into a "freak show". Unlike other major marathons that quickly incorporated wheelchair racers, Lebow and the NYC Road Runners Club did their level best to make the NYC marathon inaccessible to all people with a disability. Wheelchair racers were deemed a significant risk to themselves and others (a common place charge at the time). Marty Ball was among the first serious marathoners to push back. He registered to participate in the NYC marathon under an assumed name. For more on Ball see: http://www.wheel-life.org/marty-ball-lifelong-warrior-for-better-wheelchairs-wheelchair-sports/
I have written about the long sordid history of the NYC marathon elsewhere. See: http://www.raggededgemagazine.com/focus/26miles.html Suffice it to say, it took decades for the New York City to be inclusive to elite and ordinary wheelchair racers. Much work remains to be done to this day as wheelchair athletes have continually encountered problems in NYC and other large events. As I now live in adaptive sports mecca of Denver and nearby Colorado Springs I naively thought Western states would have been far more inclusive. I was wrong. Last week I came across a story about the first Bolder Boulder Run. The first Bolder Boulder run was held in 1979. Since its inception the Bolder Boulder run has grown exponentially. It is now the premier 10k run in the nation. It is also one of the largest running events in the world (it is the 3rd largest running race in the USA and 7th largest in the world). In 1979 however just 2,700 people participated. By 1990, when the first pro wheelchair race was introduced, over 26,000 people participated. A few years ago over 50,000 participated. See: https://bb10k.bolderboulder.com/about-bb10k/bb-history/ Note the year 1990--the first pro wheelchair race was introduced. Yes, it took nearly two decades for wheelchair athletes to be recognized. Like the NYC marathon, I suspect the main reason it took so long was because of the Bolder Boulder race organizer. Like Fred Lebow, Steve Bosely was adamantly against the inclusion of wheelchair athletes. After the inaugural race I read a story about Bosely: "Bolder Boulder Not So Bold When it Comes to Wheelchair Racers". Marty Ball participated and he along with many other wheelchair racers complained about multiple needless obstacles during the race. After the race, officials were angry and publicly vowed to exclude wheelchair racers from the race the following year. Among those officials opposed to the participation of any wheelchair racer was Bosley. While Bosely "sympathized with the plight of wheelchair racers" for unspecified logistical reasons he firmly believed they represented a risk to themselves and others. Bosley noted accidents had taken place involving wheelchair racers and they had the obligation to avoid future accidents. He petulantly noted "Our staff has discussed the wheelchair issue probably more than any single issue in the last seven or eight years and we've pretty much come to the conclusion that what we're putting on is a foot race and wheelchairs have no place". Bosley went on to state:
First, a wheelchair racer who completes the course in 32 minutes and a runner who completes a race in 32 minutes are two completely different things. A wheelchair racer goes extremely fast--up to 35MPH on downhills--and very slow on the uphills. So a runner and a wheelchair racer who start at the same time will constantly be conflicting with each others paths during the race. Second, some of the slower wheelchair racers take more than three hours to complete the course. This causes us problems because we're on a very tight schedule.
This is the exact logic Fred Lebow used in NYC to effectively bar wheelchair athletes from participating. Toward the end of his life, Lebow changed his mind about the inclusion of wheelchair racers. I have no idea if Bosely had a similar such change of heart. Regardless, Bosely spent much of his life expanding and advocating for the Bolder Boulder race. As of 2017, Bosely was on the Board of Regents at the University of Colorado and member of the Runner USA Hall of Fame. Clearly, his opposition to the inclusion of wheelchair racers in 1979 did not hurt his reputation nor impede the Bolder Boulder 10k race from becoming a premier event.
While I no longer have an interest in participating in marathons or running events, discrimination at road races continues. The Paralympics continue to operate in a media vacuum and receive virtually no press. Worse, the X Games that once highly touted adaptive sports has discontinued Mono Skier X events that was quite popular. The few stories that appear in press about adaptive athletes are uniformly terrible. These serious athletes are reduced to feel good stories about "overcoming disability". Few if any Paralympians are household names. Perhaps the best know Paralympian, Tatyana McFadden, refused to participate in the Red Bull's Wings for Life Run in 2015. McFadden wrote:
New rules within the Red Bull Wings of Life event stipulated that I couldn’t race in my racing chair and would be, instead, required to race in an everyday wheelchair and accompanied by a “support person.” I was both bewildered and upset. I felt it would be like asking other runners to run in flip flops.
The goal of Red Bull’s Wings of Life program is, admirably, to find a cure for spinal cord injuries. Their efforts should be applauded and encouraged. More companies need to step up to the plate, like them, and become socially responsible.
However, this change is inadvertently reinforcing the idea that those of us with existing spinal cord injuries are somehow less than whole persons. My injury is permanent. It has resulted in atrophied legs that I will never be able to walk on. That is the reality of how my body works. I accept this. But it does not define who I am. In the course of my life, I have discovered my own talents and abilities within the body that I have been given. I dislike the term disability, it infers I do not have ability or my abilities are somehow less than that of others. On the contrary, I have abilities others don’t.
In addition, by creating one rule for all disabled people Red Bull is perpetuating a stereotype that people with disabilities are all the same and all need assistance — and, by themselves, are not capable of doing something like racing. Instead it should be a person’s right on how they choose to race, be it with a guide runner, prosthetic leg, everyday wheelchair or a racing wheelchair. http://tatyanamcfadden.com/redbull/
Last year I had a similar the same experience. I wanted to participate in a handcycle race and a few days before the event was informed via email that any person with a disability participating using a hand cycle had to be accompanied by a support person. Here we are nearly 30 years post ADA and the infantilization of people with a disability remains firmly entrenched. Imagine if a woman was told she could not participate in a running race without a support person. Outrage would ensue. This is why I remain furious and frustrated that ableism stubbornly clings to disability. We people with a disability remain the other--always on the outside looking in--liminal in more ways than I can articulate. I for one have had it. Enough is enough.
