My favorite sociologist, Erving Goffman, noted that fame and infamy were opposite sides of the same social equation. Both fame and infamy carry heavy burdens. This is a lesson I hope to never learn as part of me fears I will suddenly became well-known. Luckily very few anthropologist ever become famous and even fewer disabled people ever hit the spot light. I delight in being anonymous yet I am aware one can become an overnight media sensation. If you doubt me, think about Susan Boyle and what she has been through in recent weeks. She became famous in an instant and 200 million people watched her performance on Britain's Got Talent. Camera crews camped outside her home, Larry King and Oprah Winfrey invited her on their shows. She could not leave her home without being trailed by reports. The only thing the mass media likes more than a sudden star is a sudden and dramatic downfall. Susan Boyle has become the latest human bit of cannon fodder. What did Boyle do wrong? She was the runner up--that is she placed second in Britain's Got Talent.
I feel bad for Boyle. Second place is not too shabby. This accomplishment is nothing in the eyes of the media. Worse yet, Boyle struggled with her sudden fame. Depending upon the periodical she was "nasty and mean spirited", "out of control", had an "anxiety attack" or "emotional breakdown". Some media experts have noted the judges on shows like Britain's Got Talent are cruel and that they failed to protect Boyle. In a word, bull. The job of the judges is to be mean and as cutting as humanly possible. In the end what I learned is nothing new: the media can both build and destroy. Susan Boyle is just the latest figure to be ripped to pieces. This is not such a bad thing in my estimation--when you think about it Susan Boyle has proven she is a mere mortal. And is not a large part of disability rights about establishing our humanity?
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
Wednesday, June 3, 2009
Sunday, May 31, 2009
Teaching, Silence and No Progress
If readers have noticed a sudden lack of entries to my blog, I can explain. I am just about to enter the third week of a summer intensive class at Purchase College. I lecture daily from 9AM to 12:40PM. This is a back breaker for me and the students who will earn an amazing four credits in three weeks. I leave the house early, get home mid afternoon and prepare for the next day. This may not sound like much but believe me when I say college course require a tremendous amount of prep work. At least the class, Body Art and Modification, is amenable to visual aides--I show a film or clips from You Tube every day. The material covered is of great interest to college students and they all seem as happy as possible.
Obviously my time is severely limited and accounts for my silence. I am inspired to write today because I was deeply moved by what Steve Kuusisto wrote on his always outstanding and interesting blog Planet of the Blind. The entry that moved was posted a few days ago and regarded surgery Steve had that restored some vision. I read this entry at my doctors office. I was having a check up for my high blood pressure which has proven very easy to maintain. Once my name was called I was amused to see that after two years the exam table at this medical mill remains totally inaccessible. Here I use medical mill as the practice is very large, well over 100 full time MDs. I wrote to the director of medicine to complain about the lack of access two years ago. This man agreed an accessible table is needed. The doctor I see agreed an accessible table. Fast forward one year. Again I wrote to complain an accessible table was needed. The director of medicine agreed again. My doctor agreed as well. Last week when my doctor entered the examination room he remarked "Look at what great progress we have made in the last two years getting an accessible examination table". I loved the sarcasm but not the results. After confirming my blood pressure is well under control each of use fired off yet another email to the medical director. I am sure these emails will produce the exact same result--no action. The sad fact is that until this practice is sued I see no reason to expect an accessible examination table will ever appear. So much for doctors being caring and sensitive to the need of patients. The utter disregard for wheelchair access at doctor offices never ceases to maze me. On top of this many hospitals I have visited are grossly inaccessible as well. Why does this happen so often? To me it all boils down to money. Like it or not, doctor offices are a business. I am sure some bean counter and lawyer at the large practice I go to regularly can explain in detail why they are not breaking the law. What they don't get is the gross inequity involved. What I think when I enter the examination room and see an inaccessible table year in and year out is just how unequal I am to my fellow citizens that can walk. Pardon my French but what a bunch of bastards.
Obviously my time is severely limited and accounts for my silence. I am inspired to write today because I was deeply moved by what Steve Kuusisto wrote on his always outstanding and interesting blog Planet of the Blind. The entry that moved was posted a few days ago and regarded surgery Steve had that restored some vision. I read this entry at my doctors office. I was having a check up for my high blood pressure which has proven very easy to maintain. Once my name was called I was amused to see that after two years the exam table at this medical mill remains totally inaccessible. Here I use medical mill as the practice is very large, well over 100 full time MDs. I wrote to the director of medicine to complain about the lack of access two years ago. This man agreed an accessible table is needed. The doctor I see agreed an accessible table. Fast forward one year. Again I wrote to complain an accessible table was needed. The director of medicine agreed again. My doctor agreed as well. Last week when my doctor entered the examination room he remarked "Look at what great progress we have made in the last two years getting an accessible examination table". I loved the sarcasm but not the results. After confirming my blood pressure is well under control each of use fired off yet another email to the medical director. I am sure these emails will produce the exact same result--no action. The sad fact is that until this practice is sued I see no reason to expect an accessible examination table will ever appear. So much for doctors being caring and sensitive to the need of patients. The utter disregard for wheelchair access at doctor offices never ceases to maze me. On top of this many hospitals I have visited are grossly inaccessible as well. Why does this happen so often? To me it all boils down to money. Like it or not, doctor offices are a business. I am sure some bean counter and lawyer at the large practice I go to regularly can explain in detail why they are not breaking the law. What they don't get is the gross inequity involved. What I think when I enter the examination room and see an inaccessible table year in and year out is just how unequal I am to my fellow citizens that can walk. Pardon my French but what a bunch of bastards.