I do not like to use the term ableism. There is more than a bit of irony in this and a good friend pointed out recently that ableism is the first entry in the ABC-CLIO Companion to the Disability Rights Movement edited by Fred Pelka. For those unfamiliar with this book it is an invaluable resource. I consult it often and the first entry, Ableism, begins: "Ableism is that set of often contradictory stereotypes about people with disabilities that acts as a barrier to keep them from achieving their full potential as equal citizens in society". What a great start to an encyclopedia type text devoted to disability rights. Yet, this does not address why I do not like the word. As I thought about writing this entry today, the day before many celebrate May Day, I told my son I was struggling with how to address ableism. Far from a diplomat, he replied "Dad, ableism is a stupid word. Nobody aside from people who know a lot about disability will have any idea what you are talking about. Those people are not the one's that need to understand what ableism is". Leave it to a teenager who thinks he has the answer to the world's problems to get down to brass tacks.
While I may not like the word ableism, I certainly was taught what it meant at a young age. In fact, I was taught what ableism means by mother within months of being paralyzed and well before the word existed. Thus when I think of the word ableism I think back to the days when I was a newly minted crippled dude. The year was 1978. I was 18 years old and had just emerged from a ten year medical odyssey that left me paralyzed. I did not have a clue as to which end was up. I was struggling to figure out how to drive with hand controls, take care of my paralyzed body, and return to what I expected to be a normal existence. It did not take me long to realize that a normal life was out of the question. This left me confused and I had a tendency to avoid social interaction and anything that resembled a confrontation. I was also worried about returning to school where I had been known as the kid that was always really sick and upon my return became the kid that used a wheelchair. I was not pleased and felt more than a little sorry for myself. This bring me to the point of this entry: my mother taught me to confront ableism head on.
One day I drove myself to high-school in my parents car and discovered there was no handicapped parking. When I got home I told my mother about this in a woe is me fashion designed to prompt sympathy. This went over like a led balloon. My mother told me in no uncertain terms that rather than whining about the lack of a parking spot for handicapped people I should do something about it. I replied, "Yeah, what can I do I am just a student". She told me "Tomorrow I want you to drive to school and park in the principal's parking spot. If he has a problem with this tell him there is no handicapped parking. If he gives you any grief call me and your father". I was in my first period class when the principal walked in the door and asked "Who is William Peace and why is his car parked in my spot". Stunned silence ensued, I turned red as an apple and was asked to follow him to his office. I felt like a man heading to gallows and asked to call my mother. But then a strange thing happened. I told him exactly what my mother told me to say: "I parked in your spot because there is no handicap parking. The day before I parked very far away in the student lot and had a hard time getting to the only accessible school entrance". Hardly impressed but willing to listen I dug in my heels and questioned why handicapped parking did not exist. A few minutes later my mother walked in the door. She gave the principal a withering stare only a furious mother can produce that strike fear into the hearts of others. Two things dawned on me: first, my parents were behind me 100% Although I could no longer walk, I was still the same person. Second, I realized I had to assert myself. That morning I learned I might be the same person I was before I was paralyzed but my wheelchair radically changed the way I was perceived. My mother used the lack of handicapped parking to force me to acknowledge this fact and assert my rights. By assert my rights I mean she taught me to reject ableism. Sure I was paralyzed but schools and other institutions had no right to treat me any differently. Basic and what has become known as "reasonable accommodations" could and should be made. My mother told the principal she and her husband would encourage me to park in his spot every day until the school created handicapped parking. This matter was not subject to discussion and the sooner handicap parking was created the sooner this issue would be resolved.
What happened when my mother and I left the principal's office? I went back to class and my peers were awed by my audacity. News of what I did spread like wild fire. My social status was only enhanced the next day when I drove to school and discovered next to the principals parking spot was a newly established area designated handicapped parking. I became folk hero among my peers. I was the guy that not only had the nerve to park in the principal's parking spot but in less than 24 hours get the school to create handicap parking. This was a watershed moment in my life. When I saw my mother defend me and force me to assert myself, I knew I would never accept a subservient social status. I could independently manage my own life. If confronted with ignorance and bigotry I was the one that must demonstrate I had the same rights as any other human that was bipedal. In short, my mother liberated me from an ableist mentality. I learned in a tangible way to reject the ism that forms the heart of discriminatory behavior. Since that day so long ago I have had no qualms about confronting ableism, asserting my inherent civil rights as an American citizen, and rejecting ableist beliefs that sadly remain common place some thirty years later. Too bad we cannot clone my parents who were ahead of their time and knew the importance of disability rights before the concept existed. As one reader of this blog commented I am very lucky to have won the parent lottery.
Thursday, April 30, 2009
Wednesday, April 29, 2009
Silence, ADAPT, and the Media
April has not been a good month. Some readers may have noted a lack of posts on my blog. Three reasons account for this: First, my car is worn out after 120,000+ miles and had to be replaced. Second, the NHL playoffs are in full swing and my beloved NY Rangers were eliminated last night. Third, I am gearing up for summer school as I will be teaching two classes next month. Enough excuses.
ADAPT is at it again--the front line soldiers of the disability rights movement have been protesting and getting arrested in Washington DC. In the last few days I have received action alerts from ADAPT via email, press releases about the Community Choice Act, and read newspaper accounts about the protests. The net result is that I am deeply discouraged. ADAPT is desperately needed in the fight for equality--anyone familiar with disability knows the social, economic, and political inequities that exist are profound. We are without question the most disenfranchised minority group in the United States. We are as invisible as we are great in number. We are also too often out of sight and out of mind. Why is this case? In part, because there is a long standing tradition of warehousing people with a disability in institutions such as nursing homes. It is this legacy of institutionalization that has led ADAPT to make the passage of the Community Choice Act its top priority. Not only is this logical politically and socially, if the CCA is enacted it will save and improve the lives of many people.
ADAPT is protesting in Washington DC because President Obama has failed to push the Community Choice Act. ADAPT is correct, the Community Choice act does not appear to be of any interest to Obama. Obama supports the Community Choice Act but he has not mentioned the CCA in quite some time. On Monday ten members of ADAPT met with Nancy-Ann DeParle, Counselor to the President and Director of the WHite House of Health reform. I doubt this meeting went well. Based on my reading of various news outlets ADAPT has every right to feel the President does not care or simply is not committed to the Community Choice Act. This is quite different from his position during the campaign. When the issue of disability rights came up Obama frequently mentioned his support of the CCA. Thus ADAPAT activists such Bruce Darling feel like they have been betrayed. Another ADAPT members, Dawn Russell from Denver has stated her heart is broken. The pain of true believers can be hard to cope with.
The ADAPT protests are designed to raise awareness about the Community Choice Act. More generally, though, I see the ADAPT protests as being all about the failure of the Americans with Disability Act. The ADA has utterly failed to create equality for all Americans with a disability. At the heart of this failure is one simple fact--the average person, or to use a worn out line from the campaign, Joe the Plumber, does not understand disability rights are the equivalent of civil rights. This civil rights message forcefully promoted by ADAPT has not gained traction. Disability rights continues to be grossly misunderstood by the vast majority of Americans. Far too many see disability as a medical problem that needs to be solved by future cures for a myriad of diseases. The debate over stem cell research has not helped as it has only further muddied the understanding of disability as a social construct.
Clearly, I am pessimistic about the Community Choice Act in particular and disability rights in general. The mainstream media has used the concerted and determined efforts of ADAPT in Washington DC as a news filler. Ninety one people have been arrested and over 500 protesters have come to Washington DC. None of this has warranted more than a TV sound bite. The major papers have conspicuously ignored ADAPT protesters. Sure the Wall Street Journal picked up the story but it consisted of a single photograph and a blurb. I find this deeply troubling. A careful reading of the disability rights movement reveals one thing has consistently worked to generate change--civil disobedience of the sort that ADAPT undertakes. A great example is mass transit: where major demonstrations took place a lasting legacy is efficient and reliable access to mass transportation. New York and Denver are classic examples. Both cities have extensive and accessible bus service for people with a disability.
I spent much time thinking about ADAPT yesterday. I picked up my new fancy car. The hand control place I used in the past went went out of business and I was forced to find a different company. I eventually found a new, large, and very professional shop that installs hand controls, rents accessible vans, and other adaptive equipment so people with a disability can drive independently. I am pleased with not only my car but the installed hand controls. As I drove home and played with all the new electronic marvels I began to think about the waiting room. While I waited I saw lots of disability related literature. A diverse cross section of cars and vans can be modified and brochures of this type as expected dominate the office. But I also saw a few flyers for rehabilitation clinics, centers for independent living, spinal cord injury mentoring programs, adaptive sports, etc. What was missing? Not a single brochure, photograph, or framed news article mentioned disability rights. Nothing could be found about ADAPT. This absence of any information is a problem and it is a big one. I greatly admire members of ADAPT. They have and will continue to have an impact on disability rights. But I think that ADAPT needs to figure out how to touch a far broader base than they have to date. They need to branch out and connect with a host of different disability related organizations. It does not matter if these organizations are not as committed to disability rights as ADAPT is. What is needed is a much broader front so that more people with a disability and those without perceive disability rights as civil rights. ADAPT has done many things right: sending out emails, action alerts, twitter updates, news releases, etc. In fact the latest ADAPT Action Report contained high quality evocative photographs that I found put a face on disability. Yet I doubt more than one or two people at the hand control shop knew that ADAPT was in Washington DC protesting and sadly more than a few probably never heard of ADAPT. Until we, that is me, readers of this blog, ADAPT, Obama, my son, and Joe the Plumber equate disability rights as civil rights I worry that disability rights will remain on the periphery. The struggle for disability rights is too important to allow this to happen. We must all assert our rights and be active--to do our best and set our ideals that reinforce the belief that all people are created equal. By all people I mean those that can walk and those that cannot.
ADAPT is at it again--the front line soldiers of the disability rights movement have been protesting and getting arrested in Washington DC. In the last few days I have received action alerts from ADAPT via email, press releases about the Community Choice Act, and read newspaper accounts about the protests. The net result is that I am deeply discouraged. ADAPT is desperately needed in the fight for equality--anyone familiar with disability knows the social, economic, and political inequities that exist are profound. We are without question the most disenfranchised minority group in the United States. We are as invisible as we are great in number. We are also too often out of sight and out of mind. Why is this case? In part, because there is a long standing tradition of warehousing people with a disability in institutions such as nursing homes. It is this legacy of institutionalization that has led ADAPT to make the passage of the Community Choice Act its top priority. Not only is this logical politically and socially, if the CCA is enacted it will save and improve the lives of many people.
ADAPT is protesting in Washington DC because President Obama has failed to push the Community Choice Act. ADAPT is correct, the Community Choice act does not appear to be of any interest to Obama. Obama supports the Community Choice Act but he has not mentioned the CCA in quite some time. On Monday ten members of ADAPT met with Nancy-Ann DeParle, Counselor to the President and Director of the WHite House of Health reform. I doubt this meeting went well. Based on my reading of various news outlets ADAPT has every right to feel the President does not care or simply is not committed to the Community Choice Act. This is quite different from his position during the campaign. When the issue of disability rights came up Obama frequently mentioned his support of the CCA. Thus ADAPAT activists such Bruce Darling feel like they have been betrayed. Another ADAPT members, Dawn Russell from Denver has stated her heart is broken. The pain of true believers can be hard to cope with.
The ADAPT protests are designed to raise awareness about the Community Choice Act. More generally, though, I see the ADAPT protests as being all about the failure of the Americans with Disability Act. The ADA has utterly failed to create equality for all Americans with a disability. At the heart of this failure is one simple fact--the average person, or to use a worn out line from the campaign, Joe the Plumber, does not understand disability rights are the equivalent of civil rights. This civil rights message forcefully promoted by ADAPT has not gained traction. Disability rights continues to be grossly misunderstood by the vast majority of Americans. Far too many see disability as a medical problem that needs to be solved by future cures for a myriad of diseases. The debate over stem cell research has not helped as it has only further muddied the understanding of disability as a social construct.
Clearly, I am pessimistic about the Community Choice Act in particular and disability rights in general. The mainstream media has used the concerted and determined efforts of ADAPT in Washington DC as a news filler. Ninety one people have been arrested and over 500 protesters have come to Washington DC. None of this has warranted more than a TV sound bite. The major papers have conspicuously ignored ADAPT protesters. Sure the Wall Street Journal picked up the story but it consisted of a single photograph and a blurb. I find this deeply troubling. A careful reading of the disability rights movement reveals one thing has consistently worked to generate change--civil disobedience of the sort that ADAPT undertakes. A great example is mass transit: where major demonstrations took place a lasting legacy is efficient and reliable access to mass transportation. New York and Denver are classic examples. Both cities have extensive and accessible bus service for people with a disability.
I spent much time thinking about ADAPT yesterday. I picked up my new fancy car. The hand control place I used in the past went went out of business and I was forced to find a different company. I eventually found a new, large, and very professional shop that installs hand controls, rents accessible vans, and other adaptive equipment so people with a disability can drive independently. I am pleased with not only my car but the installed hand controls. As I drove home and played with all the new electronic marvels I began to think about the waiting room. While I waited I saw lots of disability related literature. A diverse cross section of cars and vans can be modified and brochures of this type as expected dominate the office. But I also saw a few flyers for rehabilitation clinics, centers for independent living, spinal cord injury mentoring programs, adaptive sports, etc. What was missing? Not a single brochure, photograph, or framed news article mentioned disability rights. Nothing could be found about ADAPT. This absence of any information is a problem and it is a big one. I greatly admire members of ADAPT. They have and will continue to have an impact on disability rights. But I think that ADAPT needs to figure out how to touch a far broader base than they have to date. They need to branch out and connect with a host of different disability related organizations. It does not matter if these organizations are not as committed to disability rights as ADAPT is. What is needed is a much broader front so that more people with a disability and those without perceive disability rights as civil rights. ADAPT has done many things right: sending out emails, action alerts, twitter updates, news releases, etc. In fact the latest ADAPT Action Report contained high quality evocative photographs that I found put a face on disability. Yet I doubt more than one or two people at the hand control shop knew that ADAPT was in Washington DC protesting and sadly more than a few probably never heard of ADAPT. Until we, that is me, readers of this blog, ADAPT, Obama, my son, and Joe the Plumber equate disability rights as civil rights I worry that disability rights will remain on the periphery. The struggle for disability rights is too important to allow this to happen. We must all assert our rights and be active--to do our best and set our ideals that reinforce the belief that all people are created equal. By all people I mean those that can walk and those that cannot.
Tuesday, April 21, 2009
Survey of Paralysis: What to Make of the Figures
Major news outlets such as the Washington Post, USA Today, Wall Street Journal, AP, and New York Times are reporting that a new national survey has revealed 5.6 million people in the U.S. have some form of paralysis. All news outlets highlight that the Christopher and Dana Reeve Foundation funded the study. But that is all the Reeve Foundation did--fund the study and by extension ensure the results would be widely disseminated given the foundation's ability to manipulate the press. Only the Wall Street Journal prominently noted that the study was not designed or implemented by the Reeve Foundation.
The national survey funded by the Reeve Foundation was conducted by a team of researchers headed by Anthony Cahill, nationally recognized for his work in the areas of evaluation and research methodology. Cahill is the Division Director of the Division of Disability and Health Policy at the University of New Mexico Center for Development and Disability. The national survey took three years to design and more than 30 experts in paralysis and statistics were involved as were 14 leading universities. In essence the results are based on a national telephone survey of more than 33,000 American households in which participants were asked whether they or anybody else in the household had any difficulty moving their arms or legs. Those that replied yes were included in a broad group if they were paralyzed by a disease or injury that affected their central nervous. system. Among the most common central nervous systems conditions included were spinal cord injury, multiple sclerosis, stroke, and cerbral palsy. What exactly did the national survey reveal? Here are some figures:
1.84% of the population reported some form of paralysis or about one out of fifty American citizens. The average age of those paralyzed was 52. The average length of time since the onset of paralysis was 15.6 years. 54% of those paralyzed are men, 46% female. The number of people living with spinal cord injury is 1.275 million people, the second leading cause of paralysis (stroke is the leading cause of paralysis).
I strongly suggest readers not be content with the above brief summary of the statistics I have provided. Readers should also not rely on newspaper accounts as well. I suggest readers look at the full report because it can be found on-line at the University of New Mexico School of Medicine Health Sciences Center. The national survey is not exciting reading, 25 pages of pretty dull charts and graphs.
As an anthropologist, I do not think much of national surveys. I much prefer a random sampling of intensive studies based on ethnographic research. From such intense localized studies one can discern the greater cultural significance of what was observed. We anthropologists have been doing this for a century and have published some surprising and controversial results. In spite of my bias, studies such as the one spearheaded by Cahill and his research team cannot be dismissed. I was not surprised by any of the findings--not even the much higher number of people that reported being paralyzed by spinal cord injury (five times higher than previously estimated).
Only one aspect of the national survey leaped off the page: the depressing cycle of poverty and paralysis. Poverty and paralysis
go hand in hand with one another. 24% or 977,000 people who are paralyzed earn less than $10,000 a year. 15.4% or 626,000 people who are paralyzed earn between $10,000 and 15,000 a year. Combine these figures and 34.4% or 1,603,000 paralyzed people earn less than $15,000 a year. Bt=y any stretch of the imagination these are sobering numbers.
What the survey cannot reveal is the most important variable associated with paralysis: Why. Why are paralyzed people uniformly poor? Being paralyzed is not cheap, in fact it is down right expensive to be paralyzed. Employers don't want to hire paralyzed people, insurance companies don't want to provide health care coverage, and the durable medical goods industry knows they have a captive audience. The end result is that too many paralyzed become depressed, remain unemployed years after injury, estranged from society, friends, and family. Where do such people end up? In a hospital or institution from which they are not likely to emerge. This is not a medical problem but a social failure. Does it really make sense to warehouse people who are paralyzed in institutions? Does it make any sense for an insurance company to refuse to purchase a wheelchair cushion that costs $500 but pay for hospital treatment for a pressure sore that can easily run into six figures? Does it make any sense to reject community and based care for paralyzed people that would empower them? These are just some of the conundrums people who are paralyzed encounter daily. To date, there are no solutions to these vexing social problems I have just listed. In fact I sincerely doubt that any solutions will be found in my lifetime. This realization makes me grateful for the support of my family because I am all too aware that there is not a chance I would drive a nice car, live in a beautiful home, or be a father had I not had their support financially and personally. I only wish other people who are paralyzed had similar familial support.
The national survey funded by the Reeve Foundation was conducted by a team of researchers headed by Anthony Cahill, nationally recognized for his work in the areas of evaluation and research methodology. Cahill is the Division Director of the Division of Disability and Health Policy at the University of New Mexico Center for Development and Disability. The national survey took three years to design and more than 30 experts in paralysis and statistics were involved as were 14 leading universities. In essence the results are based on a national telephone survey of more than 33,000 American households in which participants were asked whether they or anybody else in the household had any difficulty moving their arms or legs. Those that replied yes were included in a broad group if they were paralyzed by a disease or injury that affected their central nervous. system. Among the most common central nervous systems conditions included were spinal cord injury, multiple sclerosis, stroke, and cerbral palsy. What exactly did the national survey reveal? Here are some figures:
1.84% of the population reported some form of paralysis or about one out of fifty American citizens. The average age of those paralyzed was 52. The average length of time since the onset of paralysis was 15.6 years. 54% of those paralyzed are men, 46% female. The number of people living with spinal cord injury is 1.275 million people, the second leading cause of paralysis (stroke is the leading cause of paralysis).
I strongly suggest readers not be content with the above brief summary of the statistics I have provided. Readers should also not rely on newspaper accounts as well. I suggest readers look at the full report because it can be found on-line at the University of New Mexico School of Medicine Health Sciences Center. The national survey is not exciting reading, 25 pages of pretty dull charts and graphs.
As an anthropologist, I do not think much of national surveys. I much prefer a random sampling of intensive studies based on ethnographic research. From such intense localized studies one can discern the greater cultural significance of what was observed. We anthropologists have been doing this for a century and have published some surprising and controversial results. In spite of my bias, studies such as the one spearheaded by Cahill and his research team cannot be dismissed. I was not surprised by any of the findings--not even the much higher number of people that reported being paralyzed by spinal cord injury (five times higher than previously estimated).
Only one aspect of the national survey leaped off the page: the depressing cycle of poverty and paralysis. Poverty and paralysis
go hand in hand with one another. 24% or 977,000 people who are paralyzed earn less than $10,000 a year. 15.4% or 626,000 people who are paralyzed earn between $10,000 and 15,000 a year. Combine these figures and 34.4% or 1,603,000 paralyzed people earn less than $15,000 a year. Bt=y any stretch of the imagination these are sobering numbers.
What the survey cannot reveal is the most important variable associated with paralysis: Why. Why are paralyzed people uniformly poor? Being paralyzed is not cheap, in fact it is down right expensive to be paralyzed. Employers don't want to hire paralyzed people, insurance companies don't want to provide health care coverage, and the durable medical goods industry knows they have a captive audience. The end result is that too many paralyzed become depressed, remain unemployed years after injury, estranged from society, friends, and family. Where do such people end up? In a hospital or institution from which they are not likely to emerge. This is not a medical problem but a social failure. Does it really make sense to warehouse people who are paralyzed in institutions? Does it make any sense for an insurance company to refuse to purchase a wheelchair cushion that costs $500 but pay for hospital treatment for a pressure sore that can easily run into six figures? Does it make any sense to reject community and based care for paralyzed people that would empower them? These are just some of the conundrums people who are paralyzed encounter daily. To date, there are no solutions to these vexing social problems I have just listed. In fact I sincerely doubt that any solutions will be found in my lifetime. This realization makes me grateful for the support of my family because I am all too aware that there is not a chance I would drive a nice car, live in a beautiful home, or be a father had I not had their support financially and personally. I only wish other people who are paralyzed had similar familial support.
Monday, April 20, 2009
Why I Hate the New York Times
This weekend I read a dreadful article in the New York Times. On April 19 in the Arts section on Dance an article, "Still Dancing in Her Dreams", by David Barboza appeared. The article was about a Chinese dancer Liu Yan, considered to be China's foremost classical dancer. The entire focus of the article was about how Liu Yan was paralyzed in an accident two weeks before the Beijing Olympic Games (she was to be a featured performer). Many such stories of life before and after paralysis appear in newspapers. The vast majority of such articles focus on how hard the transition is from able bodied to disabled with scant attention paid to why such a transition is difficult. I try to avoid reading these articles because they tend to be maudlin, overly sentimental, and leave the reader with a singular impression: thank God I am not the one that is paralyzed. The article by Barboza takes this genre of writing to an extreme. Barboza makes it crystal clear being paralyzed is a tragedy of epic proportions. Nothing could be worse than paralysis for it destroys one's career, ambition, and life. A few examples of the overwhelming negativity include the following:
"At the peak of a golden career Ms. Liu lost control of the very limbs that experts say made her dances so magical".
"She is now struggling to come to grips with the unimaginable while hoping beyond hope that some day she will walk and even dance again".
"Where she once had incredible control, now there is none".
"Her dreams of creating her own dance dramas have evaporated and she is still only 26".
And what does Ms. Liu Yan have to say about paralysis? Here are some quotes courtesy of Barboza:
"Life is not that sweet or beautiful after an injury," she said tearfully." You confront a lot of dilemmas and pain".
"Don't be too sad for me. I'll be strong".
"From dancer to a paralyzed person--its a bitter reality".
"I can't take it. Before I could lift my legs to my head. And now my legs lie dead on the bed".
In contrast to Liu Yan I have had over thirty years to become accustom to paralysis. The transition from being a person that can walk to one that uses a wheelchair is not easy. Yet in looking back at this transition the easiest part was physical. We humans are remarkably adaptable and it does not take long to learn what rehab people call activities of daily living. The hardest part of paralysis is the social transformation. Thanks to the New York Times article my thoughts went back to my first forays in public as a paralyzed person using a wheelchair. I instantly hated the looks of pity, scorn, and sorrow when I interacted strangers. It was not until I got to graduate school that I learned there was nothing wrong with me--I did not have some sort of horrible inherit human flaw everyone could see except me. At Columbia I met Robert Murphy who gently suggested that I was the same person I was before I was paralyzed. He told me that the skewed social interaction I experienced had less to do with me than it did with society's assumptions about the meaning of disability. What I discovered in a primal way was that I had acquired a stigmatized identity. When normal and stigmatized individuals interact Erving Goffman called this a "primal scene of sociology". That is well established social guidelines are undermined when a significant flaw exists, in my case my presence as a person that uses a wheelchair. Goffman made this observation in the early 1960s and after reading Barboza I cannot help but wonder if anything has changed.
Paralysis is a unique problem and society is particularly resistant to changing its bias against those that use a wheelchair. This fact totally eluded Barboza and many others. I know this because I still encounter skewed social interaction. This makes me shake my head. Why are people so dense? Why did Barboza not focus on what possibilities remain open to Liu Yan? Perhaps her life after paralysis could have been used to discuss the role adaptive dance has yet to play in Chinese culture. Surely Barboza is aware of Gimp, a dance performance that was recently reviewed in the New York Times. No, Barboza like many others sees paralysis as nothing more and nothing less than a tragedy. Until this thought process changes in his mind and that of society paralyzed people will continue to be confronted with Goffman's primal scene of sociology. Surely we as a people and culture can do much better.
"At the peak of a golden career Ms. Liu lost control of the very limbs that experts say made her dances so magical".
"She is now struggling to come to grips with the unimaginable while hoping beyond hope that some day she will walk and even dance again".
"Where she once had incredible control, now there is none".
"Her dreams of creating her own dance dramas have evaporated and she is still only 26".
And what does Ms. Liu Yan have to say about paralysis? Here are some quotes courtesy of Barboza:
"Life is not that sweet or beautiful after an injury," she said tearfully." You confront a lot of dilemmas and pain".
"Don't be too sad for me. I'll be strong".
"From dancer to a paralyzed person--its a bitter reality".
"I can't take it. Before I could lift my legs to my head. And now my legs lie dead on the bed".
In contrast to Liu Yan I have had over thirty years to become accustom to paralysis. The transition from being a person that can walk to one that uses a wheelchair is not easy. Yet in looking back at this transition the easiest part was physical. We humans are remarkably adaptable and it does not take long to learn what rehab people call activities of daily living. The hardest part of paralysis is the social transformation. Thanks to the New York Times article my thoughts went back to my first forays in public as a paralyzed person using a wheelchair. I instantly hated the looks of pity, scorn, and sorrow when I interacted strangers. It was not until I got to graduate school that I learned there was nothing wrong with me--I did not have some sort of horrible inherit human flaw everyone could see except me. At Columbia I met Robert Murphy who gently suggested that I was the same person I was before I was paralyzed. He told me that the skewed social interaction I experienced had less to do with me than it did with society's assumptions about the meaning of disability. What I discovered in a primal way was that I had acquired a stigmatized identity. When normal and stigmatized individuals interact Erving Goffman called this a "primal scene of sociology". That is well established social guidelines are undermined when a significant flaw exists, in my case my presence as a person that uses a wheelchair. Goffman made this observation in the early 1960s and after reading Barboza I cannot help but wonder if anything has changed.
Paralysis is a unique problem and society is particularly resistant to changing its bias against those that use a wheelchair. This fact totally eluded Barboza and many others. I know this because I still encounter skewed social interaction. This makes me shake my head. Why are people so dense? Why did Barboza not focus on what possibilities remain open to Liu Yan? Perhaps her life after paralysis could have been used to discuss the role adaptive dance has yet to play in Chinese culture. Surely Barboza is aware of Gimp, a dance performance that was recently reviewed in the New York Times. No, Barboza like many others sees paralysis as nothing more and nothing less than a tragedy. Until this thought process changes in his mind and that of society paralyzed people will continue to be confronted with Goffman's primal scene of sociology. Surely we as a people and culture can do much better.
Sunday, April 19, 2009
More on Susan Boyle
Susan Boyle has become an overnight sensation. Over 20 million people have watched her performance on Britain's Got Talent. She has been besieged by interview requests and I cannot imagine what she is going through. I truly. As one would suspect, the media has asked Boyle a host of particularly stupid and rude questions. In reply she has been as generous as humanly possible. I find the media saturation about Boyle frustrating because no one has asked the questions I consider important. For example, why is Boyle unemployed? How could someone with such an amazing voice remain completely unknown? If she tried to make it in the music business and failed how did this happen?
I sincerely hope Boyle's fame will enable others that do conform to accepted notions of beauty and normalcy to be given a chance to excel. This point was made on the blog Sexability and below is a great quote:
"All one has to do is look at Susan, her facial structures and features to know she's a bit "different," and is disabled. But not THAT disabled, obviously, as she has been able to stay at home and take care of an ailing mother for years instead of being the one cared for. Read the story of her life and it is the story of so many of our lives, it is not her difference that has disabled her, but rather societies judgement, shame and fear of her difference. Society's blatant unwillingness to give Susan a chance".
Society is indeed unwilling to give people outside the norm a chance. I doubt Boyle was ever given a real chance at success in the music business. In much the same way, people with a disability are not given a chance to enter the work force. When confronted with two qualified applicants, one disabled and the other nondisabled who do you think will get hired? The person without a disability gets the job in the vast majority of cases. In part this form of non verbalized discrimination accounts for the high rate of unemployment among people with a disability. Yes, children with disabilities are entering and receiving a education with their nondisabled peers but what happens when they turn 21 years old and age out of the system? This is a significant problem, one that has not been addressed. What I am striving to get across is that Boyle and all those that fit under the academic rubric as "the other" deserve a chance. Like Boyle, people with a disability just want a chance. If we fail at least we had an opportunity. Failure is part of life as is success but to be denied an opportunity is the real issue Boyle and disabled people encounter daily.
I sincerely hope Boyle's fame will enable others that do conform to accepted notions of beauty and normalcy to be given a chance to excel. This point was made on the blog Sexability and below is a great quote:
"All one has to do is look at Susan, her facial structures and features to know she's a bit "different," and is disabled. But not THAT disabled, obviously, as she has been able to stay at home and take care of an ailing mother for years instead of being the one cared for. Read the story of her life and it is the story of so many of our lives, it is not her difference that has disabled her, but rather societies judgement, shame and fear of her difference. Society's blatant unwillingness to give Susan a chance".
Society is indeed unwilling to give people outside the norm a chance. I doubt Boyle was ever given a real chance at success in the music business. In much the same way, people with a disability are not given a chance to enter the work force. When confronted with two qualified applicants, one disabled and the other nondisabled who do you think will get hired? The person without a disability gets the job in the vast majority of cases. In part this form of non verbalized discrimination accounts for the high rate of unemployment among people with a disability. Yes, children with disabilities are entering and receiving a education with their nondisabled peers but what happens when they turn 21 years old and age out of the system? This is a significant problem, one that has not been addressed. What I am striving to get across is that Boyle and all those that fit under the academic rubric as "the other" deserve a chance. Like Boyle, people with a disability just want a chance. If we fail at least we had an opportunity. Failure is part of life as is success but to be denied an opportunity is the real issue Boyle and disabled people encounter daily.
Friday, April 17, 2009
On Being Ugly and Disabled
I dislike most television programs produced by mainstream networks such as NBC, ABC and CBS. I have a sharp aversion to popular talent shows such as American Idol and Dancing with Stars. These so called talent shows are based on two extremes: first, the audience loves to laugh at and see the judges rip into contestants that possess little talent. The ridicule heaped on such contestants is often mean spirited. The audience loves this and the judges comments are cutting and prompt much laughter. Seeing people become the butt of a joke is not my idea of entertainment. Second, some contestants have true ability and are thrust onto a national stage that would otherwise be impossible to attain.
Thanks to the internet I can selectively watch these talent shows. I usually view these shows when a contestant such as Scott MacIntyre who is legally blind appeared on American Idol. I find the appearance of people with a disability on these shows interesting because the mainstream media does a horrific job dealing with disability. Steve Kuusisto has noted on his blog Planet of the Blind that "American TV doesn't know how to handle disability. Accordingly it can't present real people with disabilities because in North American TV Land disability must always (and here we need to emphasize "always squared" be represented in quaint, saccharine or monstrous Victorian symbolism." At issue is never a disabled person's ability but rather how they "overcame" their particular physical deficit. The worse the deficit the better the visual--think beauty and the beast.
The beauty and the beast analogy struck me when I heard about Susan Boyle's appearance on the British program "Britain's Got Talent". To be blunt, Ms. Doyle is physically ugly. She also has an amazingly powerful and beautiful voice. However, no one knew about her voice when she walked on stage. She did not help her cause by stating she was unemployed, had never kissed a man and lived with her cat. The audience laughed at her when she appeared on stage and the judges openly mocked her. For example, Simon Cowell asked Ms. Boyle how old she was and when she replied "I'm 47" he rolled his eyes in disgust. When Boyle joked that she was 47 on "only one side of me" and shifted her hips another judge Piers Morgan, seemed to be in pain. This prompted much audience laughter. It was clear to one and all this woman was delusional--no one so poorly dressed and ugly could possess talent. After Boyle was finished singing Les Miserables I Dreamed a Dream the audience and judges looked befuddled. They were simply astonished by Boyle's voice. One judge, Amanda Holden, commented the she was "thrilled because I know that everybody was against you".
What I want to know is why was everyone against Boyle? The answer to this question is simple: it was assumed "ugly" women have no talent. Ugly women are not supposed to be gifted much less competent. Such women are supposed to become old maids forever wishing they were beautiful. They live alone and are miserable. This is of course totally wrong and it made me think that people with a disability have the same problem Boyle encountered. Society assumes people with a disability are inept. People with a disability are either physically or mentally incapable of excelling. It is assumed that all people with a disability have a singular focus--locating a cure for their disability. Christopher Reeve was a perfect example of this stereotype. The media ate up Reeve's search for a cure to spinal cord injury hook line, and sinker. They fawned over Reeve because he was the antiquated archetype of disability. Why is being ugly or disabled such an afront to others? The answer to this is social and theoretical. Socially we are part of a global capitalistic system, one that values youth, self reliance, and individualism. These traits are not associated with disability and result in something Karl Marx wrote a great deal about--alienation and false consciousness. Capitalism has a penchant for alienating members of society that are not productive. When you consider the fact 70% of people with a disability are unemployed it is easy to become alienated from others. Thus disabled people are perceived to be misfits, unable to contribute to the greater good. Yet people with a disability still want to fit in and be part of the mainstream. The effort to fit in is what Marx called false consciousness. The ability to fit in, to be like others is an illusion. In my case, I know I will never truly fit in. My difference, paralysis and wheelchair use, is too isolating. Social and architectural barriers abound. I do not foresee these barriers being eliminated in my life time. Thus like other people with a disability I have become "disabled and proud". This slogan puzzles many and I perceive it to be a metaphor. Disabled and proud as a metaphor undermines the great value placed on the ability to walk, see, and hear. I am not a failure because I cannot walk nor is my character flawed because I am paralyzed. The problem people such as myself and others with a myriad of different physical deficits encounter are largely social. It is hard to be a productive member of society when you are unemployed, have no access to mass transportation, housing is inaccessible, and stigma is attached to disability in the broadest sense of the term. These are the issues that desperately need to be addressed when it comes to disability. Yet this is what the media, my neighbors, school boards, and corporations try to avoid thinking about. Instead, pity and scorn are placed upon those that demand equality. This is why I am disabled proud--I am not afraid to assert my civil rights and bear the brunt of society's wrath. Frankly, I do not see that I have much of a choice. If I do not assert my civil rights as an American citizen who else will?
Thanks to the internet I can selectively watch these talent shows. I usually view these shows when a contestant such as Scott MacIntyre who is legally blind appeared on American Idol. I find the appearance of people with a disability on these shows interesting because the mainstream media does a horrific job dealing with disability. Steve Kuusisto has noted on his blog Planet of the Blind that "American TV doesn't know how to handle disability. Accordingly it can't present real people with disabilities because in North American TV Land disability must always (and here we need to emphasize "always squared" be represented in quaint, saccharine or monstrous Victorian symbolism." At issue is never a disabled person's ability but rather how they "overcame" their particular physical deficit. The worse the deficit the better the visual--think beauty and the beast.
The beauty and the beast analogy struck me when I heard about Susan Boyle's appearance on the British program "Britain's Got Talent". To be blunt, Ms. Doyle is physically ugly. She also has an amazingly powerful and beautiful voice. However, no one knew about her voice when she walked on stage. She did not help her cause by stating she was unemployed, had never kissed a man and lived with her cat. The audience laughed at her when she appeared on stage and the judges openly mocked her. For example, Simon Cowell asked Ms. Boyle how old she was and when she replied "I'm 47" he rolled his eyes in disgust. When Boyle joked that she was 47 on "only one side of me" and shifted her hips another judge Piers Morgan, seemed to be in pain. This prompted much audience laughter. It was clear to one and all this woman was delusional--no one so poorly dressed and ugly could possess talent. After Boyle was finished singing Les Miserables I Dreamed a Dream the audience and judges looked befuddled. They were simply astonished by Boyle's voice. One judge, Amanda Holden, commented the she was "thrilled because I know that everybody was against you".
What I want to know is why was everyone against Boyle? The answer to this question is simple: it was assumed "ugly" women have no talent. Ugly women are not supposed to be gifted much less competent. Such women are supposed to become old maids forever wishing they were beautiful. They live alone and are miserable. This is of course totally wrong and it made me think that people with a disability have the same problem Boyle encountered. Society assumes people with a disability are inept. People with a disability are either physically or mentally incapable of excelling. It is assumed that all people with a disability have a singular focus--locating a cure for their disability. Christopher Reeve was a perfect example of this stereotype. The media ate up Reeve's search for a cure to spinal cord injury hook line, and sinker. They fawned over Reeve because he was the antiquated archetype of disability. Why is being ugly or disabled such an afront to others? The answer to this is social and theoretical. Socially we are part of a global capitalistic system, one that values youth, self reliance, and individualism. These traits are not associated with disability and result in something Karl Marx wrote a great deal about--alienation and false consciousness. Capitalism has a penchant for alienating members of society that are not productive. When you consider the fact 70% of people with a disability are unemployed it is easy to become alienated from others. Thus disabled people are perceived to be misfits, unable to contribute to the greater good. Yet people with a disability still want to fit in and be part of the mainstream. The effort to fit in is what Marx called false consciousness. The ability to fit in, to be like others is an illusion. In my case, I know I will never truly fit in. My difference, paralysis and wheelchair use, is too isolating. Social and architectural barriers abound. I do not foresee these barriers being eliminated in my life time. Thus like other people with a disability I have become "disabled and proud". This slogan puzzles many and I perceive it to be a metaphor. Disabled and proud as a metaphor undermines the great value placed on the ability to walk, see, and hear. I am not a failure because I cannot walk nor is my character flawed because I am paralyzed. The problem people such as myself and others with a myriad of different physical deficits encounter are largely social. It is hard to be a productive member of society when you are unemployed, have no access to mass transportation, housing is inaccessible, and stigma is attached to disability in the broadest sense of the term. These are the issues that desperately need to be addressed when it comes to disability. Yet this is what the media, my neighbors, school boards, and corporations try to avoid thinking about. Instead, pity and scorn are placed upon those that demand equality. This is why I am disabled proud--I am not afraid to assert my civil rights and bear the brunt of society's wrath. Frankly, I do not see that I have much of a choice. If I do not assert my civil rights as an American citizen who else will?
Monday, April 13, 2009
Cumulative Impact of Disability Based Bigotry
My son and a group of friends went to the Outer Banks in North Carolina for a week. We had a great time even if the weather was a little cold and windy to sit out on the beach. Yesterday I tried to catch up with the news as I spent most of my time in North Carolina relaxing and reading one bad novel after another (I have terrible taste in fiction). Regardless, I was interested in an interview Governor David Paterson did that was broadcast by the Capital Connection while we were away. Paterson was interviewed by Alan Chartock of WAMC and revealed for the first time just how deeply the SNL skit that mocked his blindness hurt. My initial reaction was not positive--anyone elected to a highly visible public office has no grounds to complain about media bias. Mean spirited humor, biased news coverage, and viscous political attacks are the norm today. As I fell asleep last night I began to wonder if my lack of sympathy was a bit too hard edged. Paterson was not elected to the Governor's office and his performance to date has been a mix of success and failure. In short, Paterson strikes me as an ordinary man and a competent politician. But what struck me in the interview was the the degree to which the SNL skit hurt him.
Previously, through his spokesman, Paterson remarked that he can "take a joke" and objected to the way SNL ridiculed the fact he was blind. Paterson's bland reply made me wonder if he really had a heart. During the Capital Connection interview Paterson gave a clear indication of the impact the SNL skit had on him. Paterson stated that the SNL skit brought back a flood of memories--none of them positive. Like many people with a disability, Paterson was taunted and teased growing up. Play grounds, school buses, and hallways demonstrate there is a hard edge to humanity. People with a disability are easy targets and children can be shockingly cruel to each other. I have no doubt Paterson suffered and he noted:
"I noticed I caught myself in the days after the Saturday Night Live event especially since the media was asking me about it so much being a lot more careful how I moved around. Being a lot more conscious of trying to face the audience and not appear to be looking away. And being just a lot more insecure about how I presented myself when I don't think disabled people should. People are who they are. And I thought to myself, you know, I thought I had gotten rid of those demons when I was a teenager. But I guess somewhere latent in my personality was this reaction if I felt I had been humiliated."
Humiliated--that is the perfect word to describe what the SNL skit sought to accomplish. It effectively humiliated Paterson and by extension every person with a visual disability. Paterson was an easy target and his blindness just to good a target to pass up. The problem with this sort of humor is that it is never ending. Its cumulative impact is impossible to ignore and works its way into our concept of who we are. I know far too much about this as do most people with a disability. I was subjected to the same sort of ridicule and humiliation as Paterson growing up. Indeed, I am unaware of any person with a disability that escaped such abuse as a child. While I have moved on with life, the words and taunts I was subjected to left invisible scars. Thus like Paterson I often am struck by how I internalized this sort of disability based abuse. To this day, I almost never try to enter the front door of any building. I am never surprised when people think I am not competent. The rudest and most intrusive questions rarely bother me. When I teach architectural barriers in the classroom are common. Elevators, bus lifts and mass transportation hassles always occur. This is the norm for me, it is my life. I do not expect to be treated with the same respect as a person that can stand or walk and I do not assume any where I go will be accessible.
In the America, we have laws such as the ADA that are designed to make sure none of the above takes place. Heck, we have a legacy of almost 40 years of laws and legislation designed to make inclusion possible for people with a disability. Yet I encounter disability based prejudice daily, it is a common occurrence. Why does society tolerate and condone this? Most people simply do not care. Disability is not relevant to their lives. From an economic viewpoint, access is not valued. Why spend the money on ramps, elevators, or wheelchair lifts on buses when so few people need them? This is why SNL can get away with humiliating Governor Paterson. Our society does care about people with a disability. Children are taught from the moment they enter school that separate is acceptable when it comes to people with a disability. Kids with a disability arrive at school on the "special bus". Once in school kids with a disability are shunted off to "resource rooms". Parents with a disability are not included because gyms, auditoriums, and ball fields are not accessible. The message learned is not hard to miss--people with a disability are different, they are inherently inferior. Given a socially inferior status, they are free game. Go ahead ridicule and humiliate children and adults with a disability. Why even the President of the United States can make bad jokes about the Special Olympics. This utter lack of social standing, pun intended, leads to a 70% unemployment rate, segregated housing and transportation. This all takes place decades after Brown v. the Board of Education that ruled separate is inherently unequal. Paterson knows all this and wisely chose to keep hi mouth shut. Me on the other hand I am too much of a hard ass. I don't like being treated unequally and quick to point out the inequalities in life. This does not make me popular but I do sleep well at night knowing I have done my best and somehow in a small way advocated on behalf of those not willing or unable to assert them self.
Previously, through his spokesman, Paterson remarked that he can "take a joke" and objected to the way SNL ridiculed the fact he was blind. Paterson's bland reply made me wonder if he really had a heart. During the Capital Connection interview Paterson gave a clear indication of the impact the SNL skit had on him. Paterson stated that the SNL skit brought back a flood of memories--none of them positive. Like many people with a disability, Paterson was taunted and teased growing up. Play grounds, school buses, and hallways demonstrate there is a hard edge to humanity. People with a disability are easy targets and children can be shockingly cruel to each other. I have no doubt Paterson suffered and he noted:
"I noticed I caught myself in the days after the Saturday Night Live event especially since the media was asking me about it so much being a lot more careful how I moved around. Being a lot more conscious of trying to face the audience and not appear to be looking away. And being just a lot more insecure about how I presented myself when I don't think disabled people should. People are who they are. And I thought to myself, you know, I thought I had gotten rid of those demons when I was a teenager. But I guess somewhere latent in my personality was this reaction if I felt I had been humiliated."
Humiliated--that is the perfect word to describe what the SNL skit sought to accomplish. It effectively humiliated Paterson and by extension every person with a visual disability. Paterson was an easy target and his blindness just to good a target to pass up. The problem with this sort of humor is that it is never ending. Its cumulative impact is impossible to ignore and works its way into our concept of who we are. I know far too much about this as do most people with a disability. I was subjected to the same sort of ridicule and humiliation as Paterson growing up. Indeed, I am unaware of any person with a disability that escaped such abuse as a child. While I have moved on with life, the words and taunts I was subjected to left invisible scars. Thus like Paterson I often am struck by how I internalized this sort of disability based abuse. To this day, I almost never try to enter the front door of any building. I am never surprised when people think I am not competent. The rudest and most intrusive questions rarely bother me. When I teach architectural barriers in the classroom are common. Elevators, bus lifts and mass transportation hassles always occur. This is the norm for me, it is my life. I do not expect to be treated with the same respect as a person that can stand or walk and I do not assume any where I go will be accessible.
In the America, we have laws such as the ADA that are designed to make sure none of the above takes place. Heck, we have a legacy of almost 40 years of laws and legislation designed to make inclusion possible for people with a disability. Yet I encounter disability based prejudice daily, it is a common occurrence. Why does society tolerate and condone this? Most people simply do not care. Disability is not relevant to their lives. From an economic viewpoint, access is not valued. Why spend the money on ramps, elevators, or wheelchair lifts on buses when so few people need them? This is why SNL can get away with humiliating Governor Paterson. Our society does care about people with a disability. Children are taught from the moment they enter school that separate is acceptable when it comes to people with a disability. Kids with a disability arrive at school on the "special bus". Once in school kids with a disability are shunted off to "resource rooms". Parents with a disability are not included because gyms, auditoriums, and ball fields are not accessible. The message learned is not hard to miss--people with a disability are different, they are inherently inferior. Given a socially inferior status, they are free game. Go ahead ridicule and humiliate children and adults with a disability. Why even the President of the United States can make bad jokes about the Special Olympics. This utter lack of social standing, pun intended, leads to a 70% unemployment rate, segregated housing and transportation. This all takes place decades after Brown v. the Board of Education that ruled separate is inherently unequal. Paterson knows all this and wisely chose to keep hi mouth shut. Me on the other hand I am too much of a hard ass. I don't like being treated unequally and quick to point out the inequalities in life. This does not make me popular but I do sleep well at night knowing I have done my best and somehow in a small way advocated on behalf of those not willing or unable to assert them self.
Subscribe to:
Posts (Atom)