Several weeks ago I was suppose to race in Red Bull’s Wing for Life Run, a great cause to find the cure for spinal cord injury. Unfortunately, I had to decline the invitation. Please read my letter to them that was recently published in the News-Gazette.
The word “can’t” is not in my vocabulary.
I am a Paralympic athlete, and have won 11 Paralympic medals, 14 World Major marathons, and broken 15 world championship titles.
I am sharing this, not to brag, but to help explain a recent experience of mine as a person with a disability.
On May 4, 2015 I had hoped to run in Red Bull’s Wings for Life World Run as I had done last year in 2014. I loved it.
I loved the people I met. I loved their message. I loved that they were bringing focus on disabilities. I loved their desire and goal to cure and that 100 percent of their entry fees go to spinal cord research. Unfortunately, this year something changed.
As an athlete with a disability, I race in a wheelchair specifically designed for racing.
It is accepted for use within the Paralympic Games, the World Major Marathon series, and in fact every other race I have raced in around the world.
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.
I was born with spina bifida. I spent the first six years of my life in an orphanage without any medical assistance. Throughout my first years the one thing I was often heard saying was “ya sama” which, in Russian, literally means, “I, myself.” It was my declaration of independence. It was my battle cry — to try, to do and, as I have found, to succeed.
At the age of 6, I was adopted by an American family. I was fortunate to be raised in an environment where I was encouraged to try anything I wanted to do. It was hard. I had been malnourished and sickly.
My mother tried to enroll me in sports activities, but time after time, I would be turned away or at best sequestered to a corner seat while the other children ran, swam and climbed ropes. I was deemed “too fragile.” No one wanted me to hurt myself. I was “special” when all I really wanted was to be included.
At one point my mother wrote a letter and gave it to my school principal. It was a “get out of jail free” card as she called it. The letter said that if I hurt myself during any athletic activity, the school would not be held responsible.
My mother did not want me to fall down or to hurt myself, but she wanted me to be with all of my friends. But if I did fall down, she wanted me to know that I would survive. Because it is only through falling down that one learns to get up.
I couldn’t stand up on my own, much less walk on my feet. But I could sure swim. And I could climb a rope faster than most. And I could walk on my hands. It was these skills that brought health back to my body and gave me the spirit to succeed.
A close friend and fellow Paralympian racer, Kurt Fearnley, shares a story in his book “Pushing the Limits,” of his experience traveling in China in a wheelchair. In one instance the ramp created for people with disabilities had a 4-inch-high raised concrete barrier every yard or so down the ramp which prevented him from making it down by himself in a wheelchair. As it was explained to him by a tour guide, it was for “safety,” so “the wheelchair person cannot run away from the care taker.” The presumption was that anyone in a wheelchair must have someone pushing them. It was their society’s attitude, not their physical impairment that was disabling them.
There are all kinds of disabling conditions that people face — from minor to major. We all have them. Some are just more visible than others. Some are more debilitating than others.
I believe, however, we all have the ability to achieve greatness in our lives — greatness that often comes out of the crucible of adversity. All it takes is strength, stamina, imagination and the support of the people and the society around us.
When I look at greatness in others, from Helen Keller to Stephen Hawking to Temple Grandin, I see the potential of the human spirit to soar. Initiatives like Red Bull’s Wings of Life will make the world a better place to live in. But in the course of good intentions we often inadvertently can send out the wrong message.
Living with a disability does not limit one’s ability to excel in life. Let’s not let our society, or some element within it, clip our wings.