Saturday, May 11, 2013


At some point, my life became almost as much about the way I perceive things and the way others perceive me, than about what I do and what others do.  My first memory of this change is from the 90's.  I was at some kind of non-profit fundraising event at a theater in the neighborhood of Rogers Park in Chicago.  This guy on stage was telling a story about a community of people who lived near a famous river.  I think the river was the Ganges in India.  The river played a prominent role in the religious aspects and the practical aspects of the community's life.  Yet, the river was very polluted.  People bathed in the river and they dumped trash into the river.  The fact that the river was polluted was an insult to the spiritual and religious significance carried by the river.  This was a problem for the people who lived in the community.  To address the problem, they started to think about the river differently.  Rather than think of the river as polluted, and put the blame on the river, they thought of the people perpetrating the acts upon the river as polluters.  The onus was lifted from the river and put on the humans and animals that were polluting the river.  With this frame of reference, the river regained its spiritual significance. 

The second step in my change of thinking came when I started to work for a non-profit disability rights organization.  Early on, I was indoctrinated with a philosophy called the "social model."  The philosophy revolved around how one perceives disability. Unlike the medical model, which looks at disability through the lens of a condition that needs to be fixed or cured, the social model portrays disability as a natural part of the human condition that will someday impact everyone.  In order to create a community that is inclusive of people with disabilities, the also is not to fix the disability, but to fix the inaccessible aspects of the community.  I've worked at the same non-profit for nearly 14 years.  Even on a day to day basis, much of my job deals with sharing that social model philosophy with members of the at-large, non-disabled population. 

The philosophy has its critics, even within the disability community.  But the social model way of thinking has become ingrained in me to such an extent, it applies to me not only while I am at work, but all the time.  I am also thinking not about what happens, but about how to frame what happens.  For example, 2012 was a great year for me.  I accomplished many things of which I am proud.  But when I think of the most significant highlights for me in 2012, nothing I did stands out.  What stands out is Peter Dinklage winning the Golden Globe and Andrew Solomon writing Far From the Tree.  Those events are more significant because they had a more intense impact on how I perceive myself as a person with dwarfism, and how other people will perceive individuals with dwarfism. 

I was reminded of the importance of perspective earlier this week when a friend of mine shared a video called "This is Water."  The video is framed through a speech given by David Foster Wallace at the Kenyon College Graduation Ceremony in May of 2005.  He frames the speech on the premise that most of us operate in a default mode.  In the default mode, each of us as an individual is the center of the universe.  As the center of the universe, every road block we encounter is an inconvenience, an insult, a waste of our time.  He argues that if we always look at the world through the default mode, it's going to wear us down, exasperate us, depress us.  He says we have to step out of the default mode and look at things from a perspective outside of our own.  Doing so, we will be more compassionate.  We will be more empathetic. 

Some people may think the video and the speech hogwash.  They may roll their eyes and mutter, "whatever."  That response is fair enough.  But to me, the video is very important.  It reminds me that I need to look at what happens to me from multiple perspectives.  As a person with dwarfism, this is particularly critical.  I, along with many other people, have to deal with a lot of unnecessary stuff sometimes.  How to frame the unnecessary stuff makes all the difference.  It helps me realize that my dwarfism is not the problem.  And it helps me realize that the perpetrators of the "unnecessary stuff" may be sympathetic.  I don't want to justify mistreatment of people with dwarfism, or the mistreatment of anybody.  But sometimes it's helpful to try to understand why they do what they do.

 Sadly, David Foster Wallace died by suicide in 2008.  I always been familiar with his name, but have never read anything of his. Even if I never read anything of his, I am thankful for his effort to reinforce the message of perspective.

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