“Will she able to walk?” My father was speaking to the doctor at the University of Illinois hospital in Chicago. My parents were understandably apprehensive. At only nine months of age, I was certainly eating and smiling a lot at my parents, but otherwise my physical capabilities were at best, unclear.
On a snowy January day my mom had decided to give birth to me naturally, with no drug relief to assist with the pain of labor. I came out looking around, extremely alert, according to my dad. Within moments, however, the doctor turned to my parents. “There’s a problem.” Exhausted from the delivery, my mom was instantly confused….she had not seen me yet, and my dad had yet to notice. Reacting to the confusion on their faces, the doctor continued. “Your daughter has hand and foot anomalies.” Trying best to absorb the news with strength and grace, my father turned directly to the obstetrician. “From what you can tell, is there anything else we should know about?” The doctor responded quickly. “No. She appears otherwise perfect.”
But that was nine months before the visit to Chicago. Unsure of what I would be able to manage, my parents hoped the doctors at the U of I hospital could help predict what might be possible, and also provide answers of what type of additional assistance I might need to function. The doctor turned to respond to my dad to answer his question. “We believe she’ll be able to walk because she has a heel, but she may not walk normally.” Next, the conversation turned to my hands. “Because she has no thumb on either hand, she will likely need some type of prosthetic device to hold things.” In that moment, the doctor proceeded to attach a stick to my small wrist to provide me oppositional support. “Have her try using this, it will help her function.” Still distressed, yet grateful for the advice, my parents left the hospital. By the time we were on the highway, I had already wriggled out of the stick device.
As my parents drove south toward Urbana with me in the car and my brother Peter, only fifteen months older , the magnitude of my challenges began to really sink in for my parents. They really had no way of predicting what my capabilities would be like for the future. There were simply no guarantees.
It has been a year since U.S. Paralympic team member Susannah Scaroni wrote an awesome Guest Flaunt for me about racing in her wheelchair in London last year. Her description of the experience was captivating. “As the athletes hone in the final course…the roaring grows beyond just a sound. It becomes a loving being that transfuses into me. My face begins to tingle and my heart pounds. This is the experience of the Paralympics. Never before have I felt as if I were floating there……each day has served to increase my vigor for competition. I felt so grateful to have had the chance to be there that day, and motivated to continue on a path where I get to make each stroke matter.” I found myself re-reading Susannah’s piece recently when I half-caught a story about U.S. Paralympic award winning medalist, Victoria Arlen.
Ms. Arlen became a parapalegic after contracting a virus during childhood and which left her in a comatose state for nearly three years, ending in 2009. Despite her paralysis, she became an incredibly accomplished competitive swimmer.
Now eighteen, Ms. Arlen was recently excluded from competing in the Paralympic World Swimming Championships in Montreal. It did not escape me that the ruling came practically a year to the day that she had already set a world record in the 100-metre freestyle at the Paralympics in London.
Fresh off the heels of the (still, at least to me) shocking news relating to Oscar Pistorius’ indictment, I assumed Ms. Arlen must have been caught doing drugs, or some similarly problematic or wrongful act. Only, I was mistaken. Apparently, when Victoria Arlen and her family were already in Montreal preparing for the competition, the International Paralympic Committee (“IPC”) ruled that Ms. Arlen was ineligible and barred to compete, stating that she “failed to provide conclusive evidence of a permanent impairment.” The conclusion was based on one doctor’s assessment of a 100+ page medical report that, “if she received years of therapy and treatment, she may one day walk again.” In response, Ms. Arlen posted a comment on her personal Facebook page: “Being penalized for maybe having a glimmer of hope of one day being able to walk again is beyond sad. What message are we giving the world when we don’t encourage hope for disabled individuals?”
The IPC ruling did not sit well with me, and so later that evening, I decided to open up the discussion about it on my DHIFI Facebook page and ask whether anyone else believed the ruling to be fair. Interestingly, every person that commented believed it to be problematic. Comments ranged from, “ridiculous,” to “blown away,” to “sad” to “confused.” I was particularly taken by one commenter, Lisa Ann Lia, who teaches disability studies at a University in Illinois. Born with a form of Muscular Dystrophy, Lisa Ann Lia gets around by either using a wheelchair or leg braces. Lisa Ann Lia posted the following: “Every individual without a disability on the planet is technically ‘temporarily able-bodied.’ I do not believe it is just to consider a hypothetical situation in which this person may improve or not, when the future is unknown to everyone. Live in the moment.”
To me, the post sang in its authentic wisdom, and I cherished it and the rest of the comments. With all the added input, I was about to write my blog focused only about the ruling and its unfairness. But then, the following evening, only blocks away from my office in midtown Manhattan, a tragic auto accident occurred. A twenty-four year old tourist from the UK, Sian Green, had been simply eating a hot dog at a street stand when an out-of-control taxi mounted the pavement and crashed directly into her. The result was devastating. Her leg was severed and later amputated in the hospital, and the other was mangled.
In this moment, I couldn’t help but think about the idea that only a year earlier, the non-disabled Ms. Green was probably watching Oscar Pistorious race on his carbon fiber legs at the Olympics in her home country, and maybe also saw Ms. Arlen swim in Paralympic competition the following week. Ms. Green would have been amazed and impressed at how technology could give Pistorious opportunities his parents never would have dreamed of. However, she never would have predicted she’d have anything so intimately in common with those athletes. She never would have guessed that her own life could change in a moment, on a street corner, eating a hot dog.
In this moment I couldn’t help but think that everyone’s life-experience, is in fact, simply temporary.
I think the IPC would do better to recognize that they don’t know the future any better than the rest of us. Just as a person physically able-bodied today may find themselves unexpectedly eligible to compete in a future Paralympic Games, a current Paralympic athlete should only be judged on her abilities at the time of the race.
Our destinies are an untold story. Live in the moment.