Thursday, August 29, 2013
Big Trouble: I Dare to Take on Inspiration Yet Again
All my life people have a penchant for giving me nicknames. In my teens one nickname stuck--trouble. I would enter a room and one friend would always remark in a slow drawl "Here Comes Trouble". With each word his voice would rise often prompting laughter. I suppose I was trouble in part because I had a penchant for asking a lot of questions. I simply did not believe what I heard or read. Then and now I do not accept the status quo--I question everything. Today I am going to do something that will get me in big trouble. I am going to take on the concept of inspirational. Whenever I deconstruct the larger meaning of inspirational or worse yet the cure industry associated with spinal cord injury, I know I am going to get slammed with email that borders on hateful. I am sorry but I sometimes cannot keep my mouth shut. Today is one of those days.
A story is spreading quickly in mainstream news outlets about a young paralyzed bride who walked down the aisle on her wedding day. Here are the bare bone facts. Stevie Beale married Jared VanAusdale earlier this month. Beale was paralyzed in a car crash in 2006 that killed her friend. After Beale became engaged months ago she began to focus on a single goal--walking down the aisle in her wedding dress. She accomplished this goal. There is no question Beale looked gorgeous on her wedding day. She succeeded in achieving her goal of walking down the aisle. After the couple exchanged vows videos on You Tube and multiple news outlets show Beale being carried by her husband in her wedding dress. This is through and through a Hollywood like production that the wedding industry capitalizes on. It is romantic in the extreme yet I refuse to provide a link to the videos that abound. I have no doubt most people who saw the short clip of the bride walking down the aisle were teary eyed. Beale and her husband are photogenic and attractive people. I wish them nothing but the best. I am happy for the couple and especially for Beale who set a goal and achieved it.
Here comes the proverbial but: I do not like the videos or the way the mainstream news media has framed the story. My problem is not with Beale and her husband. Not at all. Instead I object to the way her wedding day is portrayed. The word inspiration is being used in virtually every story. I read headlines such as "An Inspirational Walk Down the Aisle" or "Beauty Exists" or "Dreams Come True" and cringe. To me Beale is no different that any bride. The way she moves down the aisle is meaningless to me. The mainstream press however relies on an antiquated notion of paralysis and disempowers Beale. For example, Today.com wrote Beale was devastated by the death of her friend and paralysis. The story wen on to note "once a softball player, gymnastics teacher and soccer coach, she questioned what she would do with the rest of her life when the activities that had defined her were no longer physically possible". This is simply wrong and relies on ignorance. I am sure Beale's wondered what life would be like post SCI--all people do. But the idea sports or physical activities are no longer possible ignores the fact adaptive sports are equally enjoyable. Beale is quoted after her injury that she "thought I was doomed to my parents house, to never have a boyfriend, or never get married. I thought I was going to sit at home and rot away". I understand this concern. I had similar thoughts myself in 1978. But no one asks why? Why should any person who experiences a spinal cord injury worry they will rot away? People rot away because society refuses to accommodate difference--in Beale's case using a wheelchair. Utterly lost is the fact American society remains hostile to the presence of people with a disability. A powerful troika prevents too many people like Beale post SCI from leading a rich and rewarding life: 1. A lack of accessible housing. 2. The lack of accessible mass transportation. 3. Rampant unemployment. To these three variables one can add stigma, social isolation, and the belief it is socially acceptable for a paralyzed person to spend the rest of their life feeling sorry for themselves.
The focus of the mainstream media was what I would expect: it is simply a feel good story. No real questions or issues were discussed that directly affect the lives of people who experience a SCI. Every story relied on an emotional reaction. Paralysis is considered to be an individual tragedy. I see no tragedy in paralysis--it is a physical deficit the vast majority of people adapt to over time. Of course no one wants to be paralyzed, myself included. And yes such an injury changes the direction of one's life. But so do many other life changing events. Think divorce, death of a parent, birth of a child, drug or alcohol abuse, employment or lack of employment etc. The real problem Beale and her husband will face are not glamorous and will likely never be discussed in a mainstream newspaper. The problems I am referring to are not sexy nor do they prompt an emotional reaction. Here I go back to my troika of a lack of housing, transportation, and employment. These issues require some real thought and a re-evaluation of disability in the broadest sense of the term. Until disability rights and civil rights are assumed by all people to be one in the same stories such as Beale's will continue to be published. Such stories ignore the nitty gritty issues that are barriers for Beale who obviously wants to lead to a rich and full life.
There is another aspect of Beale's story that is inherently disempowering. Her husband is consistently portrayed as the reason she could walk down the aisle. In story after story it is noted Beale's husband "brought her back to life" and is well on his way to becoming a saint. What is assumed is that Beale's husband is a saint because he married a paralyzed woman. Only one story I read noted Beale did not meet her husband until well after she was paralyzed. Somehow Beale must have thrived on her own for years. In fact I am willing to bet she is a dynamic human being. Why else would a man ask to marry her? At the end of the day, I find the entire story simplistic and misleading. Beale's interest in walking, based on what I have read, was restricted to walking down the aisle in a wedding dress. I get this. Many women put great thought into what they will wear on the day they will marry. But this is a very different matter. In fact what I found of great interest was what was not shown. Beale sitting in her wheelchair. It made me think yet again that a wheelchair could be characterized as a portable social isolation device. And this my friends is the real problem.