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Friday, May 22, 2015

Sports Illustrated and ALS as Inspiration

In journalism, the weakest writers in my opinion can be sports reporters. The back page of tabloids are dedicated to sports and are too often filled with poorly written articles devoid of substance. There are no Red Smiths active today. Smith was one of the most widely read sports reporters for fifty years and won a Pulitzer prize for distinguished commentary in 1976. Fast forward to the present and I often cringe when I read mainstream journalism dedicated to sports. I read a particularly bad article in Sports Illustrated by Jeff Bradely. He wrote “Super Bowl Winning Ravens LB O.J. Brigance  Embraces his ALS Fight”. I knew the article would be bad after reading the title. The military metaphor sets up an unhealthy dichotomy that Susan Sontag wrote about long ago in Illness as a Metaphor. Those that win their “battle” with cancer are heroes. They are lauded as survivors. Those that are defeated by cancer are losers. They were not strong enough to win. They are weak. They did no try hard enough. They should have found an obscure cure because that is what winners do.  Obviously Mr. Bradely has not read Sontag’s work.

It is apparent Bradley has accepted the idea that anyone with ALS that is on a vent and works is a person to be lauded. Bradely wrote: its not often that Brigance, a Super Bowl winning linebacker for the Baltimore Ravens who was diagnosed with ALS, isn’t smiling. Even as he’s lost the ability to walk and speak over the last eight years, Brigance, 45, seems to have never stopped smiling. He shows up to work five days a week as the Ravens senior advisor for player engagement, showing all those around him what it means to push on”.

Even for sports reporting this is over the top. Contrast this Super Crip like existence with a man who has a typical body. How many men 45 years old are applauded for showing up to work five days a week. Oh, how inspirational! Better yet, Brigance is smiling all the time! Oh my, be still my heart. A crippled man is happy, works hard and is married. This sounds pretty ordinary to me.

Another smiling passage from Bradely:

“Brigane’s courage is on display a the Ravens complex each day he shows up to work. For as much as ALS has taken away from the man who made the very first tackle in Super Bowl XXXV—a blow out win over the Giants Brigance seems to never stop smiling. Ray Lewis, the Ravens former defensive leader and a man who took pride in his ability to motivate others, did not shy away from using Brigance as an example of extreme mental toughness.”

Again, would a bipedal man be characterized as having “extreme mental toughness” for simply working? Not a chance. It would be a demeaning characterization. Yet it is okay to give praise to a person with a disability who is doing the ordinary. Brigance is also modest. “In his typical self-effacing way, Brigance downplays the role he plays with the Raven”. No article is complete about a man with a disability until he is deemed inspirational. In Ghandi like fashion Brigance dismisses his inspirational existence and states that it is his wife of 22 years who is inspirational.

Please do not take my words as criticism of Brigance. He is an ordinary man who happens to have ALS.  An ALS diagnosis is devastating because most people die within two to five years. Brigance is luckily an exception  though I am sure he does not feel lucky. He appears to be well aware that he has profound advantages over others with ALS. Brigance is quoted as stating:

My first realization was the platform I had been given as a professional athlete could be very advantageous to raising awareness about ALS. Secondly, I discovered the exorbitant costs to live with ALS, even if one would choose to take life prolonging measures, such as going on a ventilator. That is when we decided to raise money to help PALS (people living with ALS) and their families to purchase the durable equipment and services to help with day to day living with ALS. We have awarded communication devices, wheelchairs, home generators, built ramps and provided home nursing care. All with the purpose of helping PALS have the very best quality of life possible. I am very proud of what we have accomplished, however there are so many others who need help. That is why we will continue to seek support from everybody we can touch to address the need.

This is where I get frustrated. Bradely’s article appeared in Sports Illustrated—a magazine that is widely known and respected. Yet he does not in any way delve into the inequalities in accessing the required medical equipment that makes life possible with ALS. Why do people go into deep debt, especially after they start using a vent? Are those without financial resources given the same options as those privileged such as Brigance? I doubt it. More to the point, why does health insurance not cover all the medical needs of those with ALS and a host of other degenerative neurological conditions. I commend Brigance for his level of awareness and dedication to helping others with ALS.  I merely wish more people would ask the basic question why.  Why do people with severe disabilities go into debt? Even more sobering, do some people with ALS choose to die and not go on a vent because they will be an economic burden on the family.

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