It has been raining off and on for days. I have been too lazy to go out as I don't feel like getting drenched. Today I had no choice. I was out of beer and school town taxes are due. I waited until the end of the day hoping the skies would clear. No such luck. Off I go to the post office, bank, and supermarket in the rain. Woe is me.
Amazingly there is a handicapped parking spot open at the strip mall. I snag the spot and quickly realize waiting for the rain to let up is a waste of time. As I am getting out of the car putting my wheelchair together I see a guy in a big SUV staring at me through the driver window. By staring I mean a bold face stare. I am clearly fascinating. I am rushing in large part because I do not want to get drenched. Off I go to the post office and supermarket. Taxes are on their way and I have beer to go with my dinner. What more could a man want? As I am getting back into the car the same man in the SUV is staring at me. Again, a bold face stare. Now I am annoyed. I stare back, glare actually. He does not get it. And yes it is still raining hard. The man rolls down his window and the following exchange takes place:
Me: The show is over, stop staring.
Man: Wow, it is amazing how you get that wheelchair in and out of the car.
Me: Stop staring, you are being rude.
Man: I am a nice guy. You are amazing.
Me: You are not being nice, you are being rude.
Man: Why are you mad? You are amazing. I am nice.
Me: No, you are being rude. I do not want to be stared at. I do not like it. Stop staring.
Man: It is cool the way you put the wheelchair together. I like to watch.
Me. The show is over. Stop staring you are being a jerk.
Man: Why are you people always so bitter? I am just being nice.
Me: You are not nice. You are point blank rude. Stop staring.
Exasperated, the man shakes his head like he is dealing with a difficult child. As the window goes up he says: "Some people you just can't be nice to" and suddenly yells "you ass hole".
Ah just another day in paradise. I am so glad that 20 years ago the ADA mandated that I have equal rights. I am not sure this memo is understand by more than a tiny fraction of Americans. The above exchange was hardly unusual--it happens to me on a regular basis. Call me crazy--or a bitter asshole--but I find getting my wheelchair in and out of the car as exciting as watching a bipedal person get in and out of his car. This is not "amazing" stuff and I was very clear I did not want to be stared at. To me, that is not much to ask. What is amazing to me is how rude and oblivious people can be. Is this man vaguely aware of how rude he was? Not a chance. The problem in his estimation is "you bitter people"--yes I was reduced to "you bitter people" and labeled an ass hole. Is it any wonder there are days I do not want to leave my home? Social assaults are commonplace, accepted and on rainy days like this do think they will ever stop.
Disasters and Disability
Tuesday, September 27, 2011
Earlier this month I wrote about the dreadful response of New York City's emergency preparedness program as it pertained to people with disabilities. In spite of ten years of planning and countless meetings the city was not prepared to meet the needs of people with disabilities. Emergency shelters were not accessible. School buses used to evacuate people had no lifts. Emergency announcements did not provide American Sign Language interpreters. Maps of shelter routes could not be used by people with low vision. More than one person that used a wheelchair was turned away from an emergency shelter. These are the mere highlights of the city's epic failure.
It seems quite evident to me that Mayor Bloomberg's administration has utterly failed to meet much less respect the rights of people with disabilities. Perhaps Bloomberg's indignant reaction in 2009 to Michael A Harris, a disability rights advocate whose tape recorder inadvertently went off at a press conference was a sign of trouble to come. Callous in the extreme, Bloomberg has given an encore performance. At a press conference after Hurricane Irene Bloomberg seemed to suggest that people with disabilities should rely on taxi cabs rather evacuation buses that were not accessible. Good luck with that one! Less than 2% of city taxis are accessible. And need I mention the so called taxi of tomorrow will not be accessible either. Catching an accessible cab even on the best of days is not easy.
Given the above I was heartened to read the Brooklyn Center for Independence of the Disabled and the Center for Independence of the Disabled, New York are suing the city in Federal District Court. The suit alleges that Bloomberg and the City of New York discriminate against men, women, and children with disabilities by failing to include their needs in emergency planning. To me this is self evident. New York is a hard place to live--I accept this as a matter of fact. However, I do not accept the Bloomberg administration making things harder for people with disabilities. What I see is a pattern of discrimination that has percolated throughout the tenure of the Bloomberg administration. I get a sense from reading the statements of disability rights advocates that the Bloomberg administrations listens to what they have to say and then completely disregards the rights of people with a disability. I also get a sense the failure of the city emergency preparedness program to meet the needs of people with a disability was the last straw. People, disabled people, could have died. Our risk is disproportionately and needlessly high. Hence I cannot help but conclude that Susan Dooha, Executive Director of CIDNY was correct when she observed "The aftermath of Hurricane Irene reveals a blatant disregard for the lives of persons with disabilities and clearly shows that our efforts over the past 10 years to inform the city of its shortcomings in emergency planning were largely ignored". I am not sure what it will take for the Bloomberg administration to change. Does someone need to die before the city acts?
It seems quite evident to me that Mayor Bloomberg's administration has utterly failed to meet much less respect the rights of people with disabilities. Perhaps Bloomberg's indignant reaction in 2009 to Michael A Harris, a disability rights advocate whose tape recorder inadvertently went off at a press conference was a sign of trouble to come. Callous in the extreme, Bloomberg has given an encore performance. At a press conference after Hurricane Irene Bloomberg seemed to suggest that people with disabilities should rely on taxi cabs rather evacuation buses that were not accessible. Good luck with that one! Less than 2% of city taxis are accessible. And need I mention the so called taxi of tomorrow will not be accessible either. Catching an accessible cab even on the best of days is not easy.
Given the above I was heartened to read the Brooklyn Center for Independence of the Disabled and the Center for Independence of the Disabled, New York are suing the city in Federal District Court. The suit alleges that Bloomberg and the City of New York discriminate against men, women, and children with disabilities by failing to include their needs in emergency planning. To me this is self evident. New York is a hard place to live--I accept this as a matter of fact. However, I do not accept the Bloomberg administration making things harder for people with disabilities. What I see is a pattern of discrimination that has percolated throughout the tenure of the Bloomberg administration. I get a sense from reading the statements of disability rights advocates that the Bloomberg administrations listens to what they have to say and then completely disregards the rights of people with a disability. I also get a sense the failure of the city emergency preparedness program to meet the needs of people with a disability was the last straw. People, disabled people, could have died. Our risk is disproportionately and needlessly high. Hence I cannot help but conclude that Susan Dooha, Executive Director of CIDNY was correct when she observed "The aftermath of Hurricane Irene reveals a blatant disregard for the lives of persons with disabilities and clearly shows that our efforts over the past 10 years to inform the city of its shortcomings in emergency planning were largely ignored". I am not sure what it will take for the Bloomberg administration to change. Does someone need to die before the city acts?
The Last Word on Identity?
Monday, September 26, 2011
A month ago when Rachel Cohen-Rottenberg asked me to do a guest post on her blog Journeys with Autism I was stumped. The intent of the post was to "widen the disability perspective". As luck would have it on the same day Rachel wrote to me I received the latest issue of Current Anthropology. The entire issue was devoted to keywords and among them was "identity". I had my topic. Identity has been discussed at length by disability scholars and I thought the subject fit well within Rachel's desire to widen the understanding of disability. I thought the choice may be a bit esoteric but wanted to provide a wider audience with a bit of disability studies theory. Never did I think it would generate a strong response. But a strong response is what I received. Claire Roy (Life with a Severely Disabled Daughter) took me to task and prompted a second post on identity. This in turn prompted Phil Dzialo (Healing, Empowering and Thriving) and Eric (I am a Broken Man You Can't Break Me) from writing about identity as well. Claire, Phil and Eric all have profoundly disabled children. I faithfully read the blogs they maintain for two reasons. First, they are well written and thought provoking. They all write with great passion I envy. Second, their voices, those who care for profoundly disabled children and the adults they become, is largely ignored in disability studies and disability rights.
With this preamble, let me address why identity in terms of disability is important and where it fits within disability history. But I do not want to just look back, I also intend to look into the future. In my life time I identify two distinct eras in disability history. This is not an original observation. Indeed, I am building on the work of the historian and disability studies scholar Paul Longmore. Longmore wrote the first phase of disability history concerned a quest for civil rights. One could debate how successful the first phase was given how often the ADA and forty years of similar legislation has been ignored, broken and eviscerated by the Supreme Court. Even with this jaundiced assessment of the ADA it is important legislation in that the law, our civil rights, are theoretically protected. In short, the law is on our side. Another reason the ADA is important is that it is not designed to "help the handicapped" as earlier legislation was designed to do. The ADA was first and foremost civil rights legislation that aimed to empower people with disabilities. By itself this was a radical departure legally and socially and It has met with stiff resistance. People with disabilities railed against injustice and bigotry. They were politically active and took to the streets across the country. Denver, Washington, New York and other cities witnessed moving acts of civil disobedience that led to real social change. To get a sense of the disability rights movement in this regard read the archived pages of the Ragged Edge or better yet go on line to the Disability Rights and Education Defense Fund and watch the videos of protests from the 1970s. It becomes clear for the first time in American history people with disabilities were forcefully rejecting accepted notions and stereotypes about disability. I vividly recall this era as I was in college. We students with disabilities were pissed and without even knowing were forging a new identity. Yes, there is that word identity. Millions of people with disabilities across the country completely changed. No longer were we tragic figures, patients or clients of the state. No sir. We were disabled and proud. We had rights and we lobbied to pass laws to protect our civil rights.
In the words of Paul Longmore, "The first phase sought to move disabled people from the margins of society into the mainstream by demanding that discrimination be outlawed and that access and accommodations be mandated. The first phase argued for social inclusion. The second phase has asserted the necessity for self-determination." The repudiation of the medical model of disability and stigma associate with disability is easy to illustrate and is self evident. The quest for self definition and disability identity is far more complex to grasp. To this day, disability identity is poorly understood. In part this lack of understanding illustrates the utter failure of disability studies within academia and beyond. Disability studies scholars have delved deeply into identity issues and yet the general public and large swaths of people with disabilities have no clue such a literature exists. Scholars such as Simi Linton, author of Claiming Disability, should be a household name but instead is unknown outside of disability studies. One reason disability studies has failed to resonate with others is it has completely divorced itself from the disability rights movement from which it emerged. This is a huge problem because disability scholars should be shedding light on disability identity.
As I perceive it, disability identity is a collective process that seeks to reinterpret old or antiquated notions. As such it is perfect fodder for an anthropologist such as myself. Like Bob Murphy before me, I can act as informant and ethnographer. And what do I see as it relates to disability identity? Total confusion. The vast majority have no clue what "Disabled and Proud" or "Deaf Pride
means. The result is a jaded view point. For example, Phil Dzialo has written in Disability Identity: A Good Idea Gone Awry?:
"I am a man! I am gay! I am black or Latina! I am a victim of abuse! I am a feminist! I am an alien! I am a born-again Christian! I am Jewish! I am a witch! I am a polygamist! I am a dork! I am disabled! I am fat and proud! And what do these "I am" statements convey about identity (if identity is a true attempt to define the Self)...not much. They classify, they categorize, they define which box to file the form into. Fundamentally, group identities de-humanize and de-personalize."
Dzialo has a point but I shudder to think what would have happened during the 1960s civil rights era if all the identities he mentions above did not perceive they had some sort of collective identity. Would Rosa Parks be unknown? Would segregation still exist? Would gays and women have equal rights? Would the ADA have been passed into law? But Dzialo is onto something here. I would suggest the time has come to move beyond not only the first but second phase of disability history. The law is on our side and there is a hazy idea disability identity exists. To me what is needed is a vibrant disability culture. We people with a disability all share a common history of oppression. We all share a struggle to be included, respected. We all rail against social injustice. We all fight for adequate social supports. We all struggle to access adequate health care. We all struggle against social oblivion. We all have experienced gross violations of our civil rights and very humanity. We all have a common bond. And most importantly we all need to come together. If we do not do this we will never be equal. So this is my call, the emergence of a third era of disability history, the emergence of a vibrant disability culture.
With this preamble, let me address why identity in terms of disability is important and where it fits within disability history. But I do not want to just look back, I also intend to look into the future. In my life time I identify two distinct eras in disability history. This is not an original observation. Indeed, I am building on the work of the historian and disability studies scholar Paul Longmore. Longmore wrote the first phase of disability history concerned a quest for civil rights. One could debate how successful the first phase was given how often the ADA and forty years of similar legislation has been ignored, broken and eviscerated by the Supreme Court. Even with this jaundiced assessment of the ADA it is important legislation in that the law, our civil rights, are theoretically protected. In short, the law is on our side. Another reason the ADA is important is that it is not designed to "help the handicapped" as earlier legislation was designed to do. The ADA was first and foremost civil rights legislation that aimed to empower people with disabilities. By itself this was a radical departure legally and socially and It has met with stiff resistance. People with disabilities railed against injustice and bigotry. They were politically active and took to the streets across the country. Denver, Washington, New York and other cities witnessed moving acts of civil disobedience that led to real social change. To get a sense of the disability rights movement in this regard read the archived pages of the Ragged Edge or better yet go on line to the Disability Rights and Education Defense Fund and watch the videos of protests from the 1970s. It becomes clear for the first time in American history people with disabilities were forcefully rejecting accepted notions and stereotypes about disability. I vividly recall this era as I was in college. We students with disabilities were pissed and without even knowing were forging a new identity. Yes, there is that word identity. Millions of people with disabilities across the country completely changed. No longer were we tragic figures, patients or clients of the state. No sir. We were disabled and proud. We had rights and we lobbied to pass laws to protect our civil rights.
In the words of Paul Longmore, "The first phase sought to move disabled people from the margins of society into the mainstream by demanding that discrimination be outlawed and that access and accommodations be mandated. The first phase argued for social inclusion. The second phase has asserted the necessity for self-determination." The repudiation of the medical model of disability and stigma associate with disability is easy to illustrate and is self evident. The quest for self definition and disability identity is far more complex to grasp. To this day, disability identity is poorly understood. In part this lack of understanding illustrates the utter failure of disability studies within academia and beyond. Disability studies scholars have delved deeply into identity issues and yet the general public and large swaths of people with disabilities have no clue such a literature exists. Scholars such as Simi Linton, author of Claiming Disability, should be a household name but instead is unknown outside of disability studies. One reason disability studies has failed to resonate with others is it has completely divorced itself from the disability rights movement from which it emerged. This is a huge problem because disability scholars should be shedding light on disability identity.
As I perceive it, disability identity is a collective process that seeks to reinterpret old or antiquated notions. As such it is perfect fodder for an anthropologist such as myself. Like Bob Murphy before me, I can act as informant and ethnographer. And what do I see as it relates to disability identity? Total confusion. The vast majority have no clue what "Disabled and Proud" or "Deaf Pride
means. The result is a jaded view point. For example, Phil Dzialo has written in Disability Identity: A Good Idea Gone Awry?:
"I am a man! I am gay! I am black or Latina! I am a victim of abuse! I am a feminist! I am an alien! I am a born-again Christian! I am Jewish! I am a witch! I am a polygamist! I am a dork! I am disabled! I am fat and proud! And what do these "I am" statements convey about identity (if identity is a true attempt to define the Self)...not much. They classify, they categorize, they define which box to file the form into. Fundamentally, group identities de-humanize and de-personalize."
Dzialo has a point but I shudder to think what would have happened during the 1960s civil rights era if all the identities he mentions above did not perceive they had some sort of collective identity. Would Rosa Parks be unknown? Would segregation still exist? Would gays and women have equal rights? Would the ADA have been passed into law? But Dzialo is onto something here. I would suggest the time has come to move beyond not only the first but second phase of disability history. The law is on our side and there is a hazy idea disability identity exists. To me what is needed is a vibrant disability culture. We people with a disability all share a common history of oppression. We all share a struggle to be included, respected. We all rail against social injustice. We all fight for adequate social supports. We all struggle to access adequate health care. We all struggle against social oblivion. We all have experienced gross violations of our civil rights and very humanity. We all have a common bond. And most importantly we all need to come together. If we do not do this we will never be equal. So this is my call, the emergence of a third era of disability history, the emergence of a vibrant disability culture.
Out of Touch and Different?
Sunday, September 25, 2011
In recent weeks I have been re-energized. The Fall is my favorite time of year. The crisp air, fall colors, and knowledge ski season is around the corner has me waking up well before the sun comes up. I mostly read when I get up and the other day I looked forward to reading a new publication, Life in Action. Edited by Ian Ruder, Life in Action replaces SCI LIfe and Action, publications of the NSCIA and United Spinal Association. I am not sure what to make of Life in Action. One could argue it is a bad time to launch a new print media publication. On the other hand, I assume the two organizations will share the cost of publication and have in reality eliminated one print media publication. Regardless, I will read Life in Action with interest. I think the publication is for those new to spinal cord injury and those in the business of rehabilitation--particularly spinal cord injury. I base this on the ads and content. Large full page ads for prestigious rehabilitation hospitals abound as do ads for durable medical goods.
Life in Action is a perfect publication to leave in the waiting room at a rehabilitation hospital. If one wanted to tap into what is going on at this moment in spinal cord injury this is the publication to read. National in scope, there are many photos of smiling paralyzed people doing a variety of activities. This must be heartening to a newly injured person and his or her family. I can readily imagine a person who knows nothing about spinal cord injury being encouraged and empowered to tap into the vibrant adaptive community. All this is good but I find myself feeling disconnected from the world of rehabilitation and the newly injured. I guess I am old school--I went through rehabilitation a long time ago, before pretty rehabilitation centers in the suburbs existed. My rehabilitation was hard core. I was told you will never walk again, period and exclamation point. I was told never ask for help by therapists. Independence was key, anything else was frowned upon. The physical environment was depressing in the extreme. Frankly, I was scared to death and worked my ass off to escape from rehabilitation and get to college with my peers. In short, rehabilitation sucked. It was a way station where I could learn how to function independently and move on with life. I have no fond memories of rehabilitation or that time period. Rehabilitation is very different today. It is short--shockingly brief. Thanks to insurance companies a newly injured person once medically stable gets a few weeks of rehabilitation. If they are lucky they get additional out patient therapy. The physical environment has changed too. Many centers are quite pretty. I have mixed feeling about this. I can well imagine these centers are like akin to a haven of acceptance. People may not want to leave and the fear I experienced likely absent. There is nothing like a morbid and physically decrepit environment to motivate people to get out and resume their life.
One blurb and survey results made me feel apart from those recently injured. The survey was conducted by the NSCIA. Over 700 people responded to an inquiry about what they would like to read about future issues. The results were stunning. Radically different from what I would have guessed. The top ten topics people want to read about are as follows:
Assistive Technology
Health/fitness
Cure research
Travel
Access
Advocacy/legislative updates
Recreation
Home modification
Coping tips and strategies
Health care legislation
In a word, wow! No mention of employment or education. Health care legislation is tenth! Cure is third! Home modification is eighth! God luck getting in the door of your own home. I am stunned. Utterly taken aback. I am led to speculate that the above results are heavily skewed by newly injured people. I would also speculate what I call the cure industry has gotten its hooks into the rehabilitation world. A lasting legacy of Christopher Reeve perhaps or maybe a high profit margin in cure?
I can assure you we old timers (hard asses?) think very differently. However, I will concede I may have had similar views circa 1978. What changed and how did my views become radically different? I read Robert Murpy's book The Body Silent. This book changed my life. In one afternoon I realized my problem was not paralysis but the social response it created. Here lies the real problem with the survey results. Who is teaching and guiding the newly paralyzed people about the realities of paralysis and the social stigma associated with wheelchair use? I would venture to guess no one. What can a newly paralyzed person learn in a few weeks of rehabilitation? Not much. I had months of rehabilitation. Over those months I learned any paralyzed person who was cool cut off the handles to his or her wheelchair. I learned how to manage my bowels and bladder--these lessons did not come from nurses or doctors but other paralyzed people. I learned how to drive with hand controls. I figured out how to get dressed and avoid skin breakdowns. I learned folding wheelchairs were crappy, E&J was horrible and to get a rigid frame wheelchair. I learned how to change a tire on my wheelchair. In short, I learned how to live independently. And I learned the most from my fellow paralytics.
Do not think I am glorifying the olden days of rehabilitation. It was very different and by contemporary standards sub basic. People were essentially experimenting and making it up as they went a long. The medical model of disability ruled the day and the concept if disability rights did not exist. In this cultural milieu we newly minted cripples thrived and learned hard life lessons. Foremost among the lessons learned were a fierce independence streak and the ability to assert ourselves. We expected nothing of others, people without a disability, and railed against the social bias we encountered. It is these large and small lessons that I worry newly paralyzed people are not learning. This leads me to make a suggestion I doubt will ever come to fruition. Expose my generation, old timers, and disability activists such as ADAPT and Not Dead Yet to the newly paralyzed. We have much to learn and gain from such a meeting. The disability rights movement will benefit from new ideas of recently paralyzed people. Those of us that have lived with spinal cord injury for decades can speak from experience and perhaps derail problems before they arise. This idea has been present in my mind for a long time. I do not think newly paralyzed are ready for the harsh reality they will encounter in an ableist world. The ADA may be the law of the land but it is rarely followed. Discrimination is rampant and it takes time to learn how to cope with bias. These sort of lessons are well beyond the realm of medical professionals. It is this peer to peer connection that could foster change. Ed Roberts, founder of the independent living movement, knew this and tried to implement it in the 1970s. He called it cripple power. An apt name. I hope to see cripple power rise in my lifetime.
Life in Action is a perfect publication to leave in the waiting room at a rehabilitation hospital. If one wanted to tap into what is going on at this moment in spinal cord injury this is the publication to read. National in scope, there are many photos of smiling paralyzed people doing a variety of activities. This must be heartening to a newly injured person and his or her family. I can readily imagine a person who knows nothing about spinal cord injury being encouraged and empowered to tap into the vibrant adaptive community. All this is good but I find myself feeling disconnected from the world of rehabilitation and the newly injured. I guess I am old school--I went through rehabilitation a long time ago, before pretty rehabilitation centers in the suburbs existed. My rehabilitation was hard core. I was told you will never walk again, period and exclamation point. I was told never ask for help by therapists. Independence was key, anything else was frowned upon. The physical environment was depressing in the extreme. Frankly, I was scared to death and worked my ass off to escape from rehabilitation and get to college with my peers. In short, rehabilitation sucked. It was a way station where I could learn how to function independently and move on with life. I have no fond memories of rehabilitation or that time period. Rehabilitation is very different today. It is short--shockingly brief. Thanks to insurance companies a newly injured person once medically stable gets a few weeks of rehabilitation. If they are lucky they get additional out patient therapy. The physical environment has changed too. Many centers are quite pretty. I have mixed feeling about this. I can well imagine these centers are like akin to a haven of acceptance. People may not want to leave and the fear I experienced likely absent. There is nothing like a morbid and physically decrepit environment to motivate people to get out and resume their life.
One blurb and survey results made me feel apart from those recently injured. The survey was conducted by the NSCIA. Over 700 people responded to an inquiry about what they would like to read about future issues. The results were stunning. Radically different from what I would have guessed. The top ten topics people want to read about are as follows:
Assistive Technology
Health/fitness
Cure research
Travel
Access
Advocacy/legislative updates
Recreation
Home modification
Coping tips and strategies
Health care legislation
In a word, wow! No mention of employment or education. Health care legislation is tenth! Cure is third! Home modification is eighth! God luck getting in the door of your own home. I am stunned. Utterly taken aback. I am led to speculate that the above results are heavily skewed by newly injured people. I would also speculate what I call the cure industry has gotten its hooks into the rehabilitation world. A lasting legacy of Christopher Reeve perhaps or maybe a high profit margin in cure?
I can assure you we old timers (hard asses?) think very differently. However, I will concede I may have had similar views circa 1978. What changed and how did my views become radically different? I read Robert Murpy's book The Body Silent. This book changed my life. In one afternoon I realized my problem was not paralysis but the social response it created. Here lies the real problem with the survey results. Who is teaching and guiding the newly paralyzed people about the realities of paralysis and the social stigma associated with wheelchair use? I would venture to guess no one. What can a newly paralyzed person learn in a few weeks of rehabilitation? Not much. I had months of rehabilitation. Over those months I learned any paralyzed person who was cool cut off the handles to his or her wheelchair. I learned how to manage my bowels and bladder--these lessons did not come from nurses or doctors but other paralyzed people. I learned how to drive with hand controls. I figured out how to get dressed and avoid skin breakdowns. I learned folding wheelchairs were crappy, E&J was horrible and to get a rigid frame wheelchair. I learned how to change a tire on my wheelchair. In short, I learned how to live independently. And I learned the most from my fellow paralytics.
Do not think I am glorifying the olden days of rehabilitation. It was very different and by contemporary standards sub basic. People were essentially experimenting and making it up as they went a long. The medical model of disability ruled the day and the concept if disability rights did not exist. In this cultural milieu we newly minted cripples thrived and learned hard life lessons. Foremost among the lessons learned were a fierce independence streak and the ability to assert ourselves. We expected nothing of others, people without a disability, and railed against the social bias we encountered. It is these large and small lessons that I worry newly paralyzed people are not learning. This leads me to make a suggestion I doubt will ever come to fruition. Expose my generation, old timers, and disability activists such as ADAPT and Not Dead Yet to the newly paralyzed. We have much to learn and gain from such a meeting. The disability rights movement will benefit from new ideas of recently paralyzed people. Those of us that have lived with spinal cord injury for decades can speak from experience and perhaps derail problems before they arise. This idea has been present in my mind for a long time. I do not think newly paralyzed are ready for the harsh reality they will encounter in an ableist world. The ADA may be the law of the land but it is rarely followed. Discrimination is rampant and it takes time to learn how to cope with bias. These sort of lessons are well beyond the realm of medical professionals. It is this peer to peer connection that could foster change. Ed Roberts, founder of the independent living movement, knew this and tried to implement it in the 1970s. He called it cripple power. An apt name. I hope to see cripple power rise in my lifetime.
Identity and Disability: Part II
Thursday, September 22, 2011
Claire Roy who maintains the wonderful blog Life with a Severely Disabled Daughter has thrown down the gauntlet challenging this bad cripple about identity. If you have not read her blog I urge you to do so. She writes with great passion and I admire her work. I am happy to engage her here in large part because she poses an excellent question. Specifically, she wonders how issues of identity �relate to my daughter and others like her� those with severe intellectual and physical disabilities�. Roy writes that the slogan �disabled and proud� does not resonate for her daughter who cannot express herself and is entirely dependent upon others. Roy is blunt in her assessment of her daughter�s condition noting, �if it was possible to fix it, we would� fuck identity�. Obviously no one wants to have a permanent disability�myself included. For those of us with an obvious physical deficit it is our most identifiable feature. But Roy wonders is this identity. In a word no.
Identity in terms of disability is not defined by a medical diagnosis. Disability cannot be defined by labels such brain damage or spinal cord injury nor socially imposed categories of existence. This harkens to a medical model of disability that for decades determined the identity and roles millions of people with a disability had. The focus here was not on what a person with a disability could do but rather on their physical and mental limitations. By framing the person with a disability within the realm of pathology or limitations disability was individualized. It was a personal problem unique to themselves. This voided any possibility of systemic social analysis. The phrase divide and conquer seems apt. Disability was thus perceived only in relation to normal�meaning typical cognition and typical physical ability. We people with a disability were rendered powerless�the symbolic and real life opposite of the norm. This unacknowledged belief system was the organizing principle for decades. It led to special schools, reliance on institutional care and its modern equivalent group homes. Separate when it came to disability was socially acceptable.
Obviously I reject the medical model and instead embrace an identity that incorporates my disability (here I am leaving aside a discussion of the social model of disability). Some people with a disability can be proud of their disability in the sense it has formed who they are as a person. Here is the fundamental leap people need to make�when I see a person with a disability one thought comes to mind�adaptation. How has that person coped and adapted to a physical or cognitive deficit. I do not see limitations but rather a whole set of ways that individual has adapted to his or her circumstances. This is why I am no different from any other person with a disability. We all adapt. When I think of my identity, my disability is a central part of that thought process. However, I do not ever think of myself in relation to bipedal locomotion. I think how can I adapt a given activity to my abilities? If I want to ski I need a sit ski. If I want to kayak I know I need a slightly higher back. I do not think or ever wish I was �normal� so I could kayak or ski like others. Likewise when I see or read about Roy�s daughter I think how does she help her daughter adapt. What is it that she can do? How does she get the most out of her physical body and cognitive ability? Comparing Roy�s daughter to a person with �normal� cognition is as pointless as comparing my wheelchair use to bipedal locomotion. Both Roy�s daughter and myself will come away with the short end of the stick.
In challenging disability as identity Roy has led me to think widely on the meaning of disability and how it has evolved in the last two decades. This in turn led me to think about the two of the more controversial articles I have written�the first about Christopher Reeve and the other about growth attenuation known at the time as the Ashley Treatment. When I published these articles some of the responses I received via email were overwhelmingly negative. By negative I mean verging on hate mail. This took me aback until I realized I was questioning the accepted social order. As a close friend put it, no one likes to have his or her parade pissed on. And this in part is the problem with an identity tied to disability. As I see it, there is nothing wrong with being disabled and I mean this in the broadest sense of the term. When I see some like Roy�s daughter I see a hard assed survivor utilizing her cognitive abilities as best she can. When I see a man or woman who is blind with a guide dog, I think that is a cool form of adaptation. When I see a quadriplegic in a power wheelchair I think how fast and how far can they go. When I see deaf people signing I admire the beauty and grace of a language I do not know. I see varying forms of identity that is tied in some way to their unique abilities. All I see are endless possibilities. To me this is an identity all people with a disability share.
Identity in terms of disability is not defined by a medical diagnosis. Disability cannot be defined by labels such brain damage or spinal cord injury nor socially imposed categories of existence. This harkens to a medical model of disability that for decades determined the identity and roles millions of people with a disability had. The focus here was not on what a person with a disability could do but rather on their physical and mental limitations. By framing the person with a disability within the realm of pathology or limitations disability was individualized. It was a personal problem unique to themselves. This voided any possibility of systemic social analysis. The phrase divide and conquer seems apt. Disability was thus perceived only in relation to normal�meaning typical cognition and typical physical ability. We people with a disability were rendered powerless�the symbolic and real life opposite of the norm. This unacknowledged belief system was the organizing principle for decades. It led to special schools, reliance on institutional care and its modern equivalent group homes. Separate when it came to disability was socially acceptable.
Obviously I reject the medical model and instead embrace an identity that incorporates my disability (here I am leaving aside a discussion of the social model of disability). Some people with a disability can be proud of their disability in the sense it has formed who they are as a person. Here is the fundamental leap people need to make�when I see a person with a disability one thought comes to mind�adaptation. How has that person coped and adapted to a physical or cognitive deficit. I do not see limitations but rather a whole set of ways that individual has adapted to his or her circumstances. This is why I am no different from any other person with a disability. We all adapt. When I think of my identity, my disability is a central part of that thought process. However, I do not ever think of myself in relation to bipedal locomotion. I think how can I adapt a given activity to my abilities? If I want to ski I need a sit ski. If I want to kayak I know I need a slightly higher back. I do not think or ever wish I was �normal� so I could kayak or ski like others. Likewise when I see or read about Roy�s daughter I think how does she help her daughter adapt. What is it that she can do? How does she get the most out of her physical body and cognitive ability? Comparing Roy�s daughter to a person with �normal� cognition is as pointless as comparing my wheelchair use to bipedal locomotion. Both Roy�s daughter and myself will come away with the short end of the stick.
In challenging disability as identity Roy has led me to think widely on the meaning of disability and how it has evolved in the last two decades. This in turn led me to think about the two of the more controversial articles I have written�the first about Christopher Reeve and the other about growth attenuation known at the time as the Ashley Treatment. When I published these articles some of the responses I received via email were overwhelmingly negative. By negative I mean verging on hate mail. This took me aback until I realized I was questioning the accepted social order. As a close friend put it, no one likes to have his or her parade pissed on. And this in part is the problem with an identity tied to disability. As I see it, there is nothing wrong with being disabled and I mean this in the broadest sense of the term. When I see some like Roy�s daughter I see a hard assed survivor utilizing her cognitive abilities as best she can. When I see a man or woman who is blind with a guide dog, I think that is a cool form of adaptation. When I see a quadriplegic in a power wheelchair I think how fast and how far can they go. When I see deaf people signing I admire the beauty and grace of a language I do not know. I see varying forms of identity that is tied in some way to their unique abilities. All I see are endless possibilities. To me this is an identity all people with a disability share.
Identity and Disability
Wednesday, September 21, 2011
The below was inspired by Rachel Cohen-Rottenberg who maintains a blog I read on a regular basis entitled Journeys with Autism.If you have not read her work I urge you to visit her blog. Rachel asked me to write a guest post in September. I chose the topic, identity because it is a central concept in anthropology and key to social progress for people with a disability. Please note I finished the post a full nine days before the end of the month.
Identity and Disability
I am a crippled man. I am a proud man. Hear me roar. Yes, I am ripping off the 1970s women�s movement song �I am Woman� by Helen Reddy and Ray Burton. Being a crippled man is an integral part of my identity. I cannot imagine life without paralysis. I never think about a cure to spinal cord injury, walking or running. Such thoughts are for others; people who without question accept that walking is the only means of locomotion. As a result of my paralysis and wheelchair use I am a member of a minority group even if the Supreme Court does not agree with me. I am often asked about cure, about walking, about wheelchair access, about sex, about work, about family. These questions make one thing clear--my privacy is not respected. I am not respected. I have a stigmatized identity. Hence, well meaning people ask, �Wouldn�t you want to be cured?�, or �Wouldn�t your life be easier if you were not paralyzed?� These types of questions are so far off base it boggles my mind. The people that ask me these questions never think why. Why is life with a disability such as paralysis difficult? The answer is obvious to people with a disability. Our physical and social environment are designed for bipedal people who learn at a prescribed rate. Deviate from the norm in American society and you will see the dark underbelly of a puritanical society. I know all about this because I have seen it for the last 30 years.
I am intimately familiar with the concept of identity. Identity is of central importance to anthropologists. It is a powerful organizing presence in all cultures. When we think of identity, social structures that come to mind include ethnicity, nationalism, religion, sexuality, gender, etc. When we seek to protect a given culture or minority group the underlying belief is that people have identities and that their identity is a vital part of their concept of self. This is a given when it concerns religion, gender, nationality and sexuality to mention but a few types of identity. No one would accost a woman and ask would you like to be a man? No one would dare ask a black man if he ever wished he was white. In sharp contrast people, strangers, feel free to ask me if I wished I could be cured. The idea I consider disability to be part of my identity simply does not cross the mind of others�non disabled others. Disability for the vast majority of Americans is thought to be a medical or architectural problem�one that was solved a long time ago when the ADA was passed into law. This is dead wrong. Prejudice is alive and well. I experience it, as do all other people with a disability.
So why is identity so important to people with a disability? Disability identity is important because it will lead to social debate and careful consideration of disability well beyond the narrow way it is currently perceived. In the Foreword to Simi Linton�s ground-breaking text Claiming Disability Michael Berube noted:
"If disability is not understood in terms of complex, overdetermined and sometimes tenuous relations to identity, it will not be sufficiently incorporated into the curriculum of the liberal arts or into the definition of what constitutes the �humanities�. And if we do not imagine �disability� as a broad general subject that shapes the humanities, it is all the less likely that we will manage to imagine disability as a broad, general subject that shapes public life and public policy."
Like most people, disabled and non disabled, I did not always think this way. Disability is afterall the only minority group you can join�and not by choice. What connects all people with disabilities is a shared identity and the routine and unacknowledged violation of our civil rights. Disability scholars call the prejudice people with disabilities encounter ableism. While we people with a disability certainly understand ableism is a form of oppression when we confront others and assert ourselves we are classified as bitter. I am routinely told I have a �chip on my shoulder�. When told this I sarcastically agree�hence I identify myself as a bad cripple�one not afraid to assert my civil rights. If this puts a chip on my shoulder than I plead guilty. This takes some guts, we people with a disability are expected to be subservient, content with what society is willing to dole out for us. When we do not adhere to our prescribed role our presence is not wanted. The type of disability is not relevant�it is a variation on a single belief that is deeply ingrained in schools, businesses and our culture. One person has railed:
"People have a great deal of prejudice about autism& other developmental disabilities. I�ve been bullied out of activities and classes because I am autistic; I�ve been discouraged from even trying others. People and professionals who are familiar with autism but unfamiliar with me assume that I am less capable of many things I am�usually in a patronizing & insulting way. It is often assumed that I cannot be good at some of my hobbies and simultaneously assumed that I have some sort of magic autistic savant skill. That part of being autistic really sucks�having to prove my humanity & my individuality over and over and over again is exhausting (Timetolisten.blogspot,com)."
I would venture to say every person with a disability can relate to the quotation above. I have repeatedly been lauded for the ordinary and told I am amazing. Conversely, I have been told I cannot do many ordinary things. This is nothing short of dehumanizing. It is also why all people with a disability should embrace an identity closely linked to disability with one proviso: disability identity is not defined by a given disabling condition or body centered feature. Identification here is not a medical diagnosis or arbitrary label. With an identity tied to disability it is logical to conclude our experiences are similar. The prejudice we encounter socially sanctioned and deadly. With this realization I shudder to think of how many dreams and ambitions have been crushed. No one would tell a non-disabled child he or she cannot do something. That is an educational anathema. But this is exactly what happens to people with a disability. Frankly, I have had it. I will not tolerate being told what I can and cannot do. I know with an identity tied to disability, by being proud and disabled, I can resist and thrive.
Identity and Disability
I am a crippled man. I am a proud man. Hear me roar. Yes, I am ripping off the 1970s women�s movement song �I am Woman� by Helen Reddy and Ray Burton. Being a crippled man is an integral part of my identity. I cannot imagine life without paralysis. I never think about a cure to spinal cord injury, walking or running. Such thoughts are for others; people who without question accept that walking is the only means of locomotion. As a result of my paralysis and wheelchair use I am a member of a minority group even if the Supreme Court does not agree with me. I am often asked about cure, about walking, about wheelchair access, about sex, about work, about family. These questions make one thing clear--my privacy is not respected. I am not respected. I have a stigmatized identity. Hence, well meaning people ask, �Wouldn�t you want to be cured?�, or �Wouldn�t your life be easier if you were not paralyzed?� These types of questions are so far off base it boggles my mind. The people that ask me these questions never think why. Why is life with a disability such as paralysis difficult? The answer is obvious to people with a disability. Our physical and social environment are designed for bipedal people who learn at a prescribed rate. Deviate from the norm in American society and you will see the dark underbelly of a puritanical society. I know all about this because I have seen it for the last 30 years.
I am intimately familiar with the concept of identity. Identity is of central importance to anthropologists. It is a powerful organizing presence in all cultures. When we think of identity, social structures that come to mind include ethnicity, nationalism, religion, sexuality, gender, etc. When we seek to protect a given culture or minority group the underlying belief is that people have identities and that their identity is a vital part of their concept of self. This is a given when it concerns religion, gender, nationality and sexuality to mention but a few types of identity. No one would accost a woman and ask would you like to be a man? No one would dare ask a black man if he ever wished he was white. In sharp contrast people, strangers, feel free to ask me if I wished I could be cured. The idea I consider disability to be part of my identity simply does not cross the mind of others�non disabled others. Disability for the vast majority of Americans is thought to be a medical or architectural problem�one that was solved a long time ago when the ADA was passed into law. This is dead wrong. Prejudice is alive and well. I experience it, as do all other people with a disability.
So why is identity so important to people with a disability? Disability identity is important because it will lead to social debate and careful consideration of disability well beyond the narrow way it is currently perceived. In the Foreword to Simi Linton�s ground-breaking text Claiming Disability Michael Berube noted:
"If disability is not understood in terms of complex, overdetermined and sometimes tenuous relations to identity, it will not be sufficiently incorporated into the curriculum of the liberal arts or into the definition of what constitutes the �humanities�. And if we do not imagine �disability� as a broad general subject that shapes the humanities, it is all the less likely that we will manage to imagine disability as a broad, general subject that shapes public life and public policy."
Like most people, disabled and non disabled, I did not always think this way. Disability is afterall the only minority group you can join�and not by choice. What connects all people with disabilities is a shared identity and the routine and unacknowledged violation of our civil rights. Disability scholars call the prejudice people with disabilities encounter ableism. While we people with a disability certainly understand ableism is a form of oppression when we confront others and assert ourselves we are classified as bitter. I am routinely told I have a �chip on my shoulder�. When told this I sarcastically agree�hence I identify myself as a bad cripple�one not afraid to assert my civil rights. If this puts a chip on my shoulder than I plead guilty. This takes some guts, we people with a disability are expected to be subservient, content with what society is willing to dole out for us. When we do not adhere to our prescribed role our presence is not wanted. The type of disability is not relevant�it is a variation on a single belief that is deeply ingrained in schools, businesses and our culture. One person has railed:
"People have a great deal of prejudice about autism& other developmental disabilities. I�ve been bullied out of activities and classes because I am autistic; I�ve been discouraged from even trying others. People and professionals who are familiar with autism but unfamiliar with me assume that I am less capable of many things I am�usually in a patronizing & insulting way. It is often assumed that I cannot be good at some of my hobbies and simultaneously assumed that I have some sort of magic autistic savant skill. That part of being autistic really sucks�having to prove my humanity & my individuality over and over and over again is exhausting (Timetolisten.blogspot,com)."
I would venture to say every person with a disability can relate to the quotation above. I have repeatedly been lauded for the ordinary and told I am amazing. Conversely, I have been told I cannot do many ordinary things. This is nothing short of dehumanizing. It is also why all people with a disability should embrace an identity closely linked to disability with one proviso: disability identity is not defined by a given disabling condition or body centered feature. Identification here is not a medical diagnosis or arbitrary label. With an identity tied to disability it is logical to conclude our experiences are similar. The prejudice we encounter socially sanctioned and deadly. With this realization I shudder to think of how many dreams and ambitions have been crushed. No one would tell a non-disabled child he or she cannot do something. That is an educational anathema. But this is exactly what happens to people with a disability. Frankly, I have had it. I will not tolerate being told what I can and cannot do. I know with an identity tied to disability, by being proud and disabled, I can resist and thrive.
Handicap Parking: Passive Aggressive
Saturday, September 17, 2011
I have written about handicap parking in the past and the subject always generates a strong response. Since I got sick a year ago I have resumed using handicap parking. Frankly, I need handicap parking now. When I first started getting up and around I could not go too far without becoming short of breath. Yes, I was in that bad of shape. In recent weeks I have been wondering why I still use handicap parking. I am constantly infuriated with those who use handicap parking. The vast majority that use these much sought after spots appears to have no reason for using them. But I know all too well appearances can be deceiving. A double or single amputee could walk out of his or her car and I would have no clue they were an amputee. Of course the population that garners virtually all handicap spots are elderly. More power to them as there is no question that the elderly struggle with mobility. Of course this does not stop my son from calling handicap parking old people parking. His tone is humorous but has an edge I do not like. I never comment about any use of handicap parking spots. I know the little blue placards in NY and other states are grossly abused. I know this angers the police. Heck, it angers me! However, I am resigned to rampant abuse. My only wish is doctors that sign off on handicapped parking permits would put more thought into the process.
I was thinking about why I get angry about handicapped parking. I realized after some reflection only two things bother me. In the winter handicap parking is where they pile the snow after a storm. I know for a week or two handicapped parking will be useless. Nothing can be done about this. Annoying yes but very temporary inconvenience. But what really gets me are shopping carts. Yes, shopping carts. Handicap parking is where shoppers abandon their carts. I see this every time I go out. Abandoned carts often block one from parking or make it impossible to get out of the car. Much to my son's chagrin I have developed a passive aggressive mechanism for dealing with carts. I will park in the one cart free spot, get out of my car and push the cart or carts into non handicap parking spots. I get a giggle out of this every time. How petty I am. My son thinks I am acting out in a bizarre or useless manner. He is mostly correct. However once in a while someone will ask why I am moving the carts where they will obviously block a spot. I tell them I found the carts in handicap parking and they were in the way. A few people will get the message I am seeking to deliver anonymously. In sharp contrast, some people actually get mad at me--not often for sure. Most people, like my son, think it is odd behavior. I suppose it is. I also suppose it is petty. But it still gives me a sense of satisfaction. I am convinced people who are observant will get the message I am seeking to deliver. And that is all I am trying to do--get a select few people to think. Handicapped parking is a ubiquitous aspect of every day life few give any thought. We people with a disability think about the violation of handicapped parking and find it unacceptable. It is a minor inconvenience that indicates a much larger problem. The routine violation of our civil rights. Handicapped parking is very minor but indicative of a much larger cultural problem.
I was thinking about why I get angry about handicapped parking. I realized after some reflection only two things bother me. In the winter handicap parking is where they pile the snow after a storm. I know for a week or two handicapped parking will be useless. Nothing can be done about this. Annoying yes but very temporary inconvenience. But what really gets me are shopping carts. Yes, shopping carts. Handicap parking is where shoppers abandon their carts. I see this every time I go out. Abandoned carts often block one from parking or make it impossible to get out of the car. Much to my son's chagrin I have developed a passive aggressive mechanism for dealing with carts. I will park in the one cart free spot, get out of my car and push the cart or carts into non handicap parking spots. I get a giggle out of this every time. How petty I am. My son thinks I am acting out in a bizarre or useless manner. He is mostly correct. However once in a while someone will ask why I am moving the carts where they will obviously block a spot. I tell them I found the carts in handicap parking and they were in the way. A few people will get the message I am seeking to deliver anonymously. In sharp contrast, some people actually get mad at me--not often for sure. Most people, like my son, think it is odd behavior. I suppose it is. I also suppose it is petty. But it still gives me a sense of satisfaction. I am convinced people who are observant will get the message I am seeking to deliver. And that is all I am trying to do--get a select few people to think. Handicapped parking is a ubiquitous aspect of every day life few give any thought. We people with a disability think about the violation of handicapped parking and find it unacceptable. It is a minor inconvenience that indicates a much larger problem. The routine violation of our civil rights. Handicapped parking is very minor but indicative of a much larger cultural problem.
The Problem with "Special"
Monday, September 12, 2011
This summer I have been lucky enough to travel. I love to travel and thoroughly enjoy reaching my destination. However, I hate to fly. Domestic travel as most know is an absolutely miserable experience. Airlines, never known for outstanding customer service, have since 9/11 made flying a uniformly bad experience. Planes are fully booked, often dirty, and food absent. Airlines also nickle and dime customers to death: $2 for head phones, $25 for checked bags, $100 for an unaccompanied minor, $40 for the bulk head seat etc. Fees on top of fees ad to the cost of travel. None of this is new. Ask virtually anyone and they will have a miserable travel related story. Ask someone who uses a wheelchair and the stories become worse--much worse. Airlines have an institutional bias against people with a disability. This ingrained bias, bigotry really, has not changed in thirty years. What has changed is the law. The Air Carrier Access Act is firmly on the the side of people with a disability. No longer can I be banned from flying for no other reason than the fact I use a wheelchair. This does not in any way mean I am welcome or treated equally by airline employees. Indeed, I am routinely perceived as a "problem"--extra work for employees. And truth be told it does require more work to get me on a plane-not much but in an industry were time is limited and profit margins narrow I am perceived as a problem. When I fly I assume problems will abound. I am rarely if ever have a routine experience.
Aside from being perceived as extra labor, airlines I suspect resent giving passengers with disabilities "special" treatment. Special for me involves getting the bulkhead seat--never easy given the fact these seats are sold to any passenger willing to fork over $40 for a few extra inches of leg room. Special also means I am the first person on the plane and the very last person off the plane. I do mean last as in the very last passenger off the plane. Every time I fly I get to see the flight crew depart and cleaning crew come aboard while I wait for "trained personnel" to help me onto what the airlines call a straight back. This is a very narrow wheelchair that fits in the aisle of the plane. More often than not the trained personnel have no idea what they are doing. Each time I flew this summer multiple FAA regulations were violated assisting me off the plane. Waits for the trained personnel are common. I often get to sit on an empty plane waiting. Forget about making connecting flights in a reasonable amount of time. The special treatment I receive adds hours of time to my travel experience. Airlines do not care one iota. What is very clear is that my existence is of the lowest priority. First on last off--too bad. Cope with it. We will help you when we have assisted every other passenger--and I do mean every other passenger.
I am lumped by airlines into a group of special people. Children, elderly, and pets. Don't believe me? Check out any airline website. I am deemed a "passenger with special needs". If I have learned one thing in life it is that we Americans loath so called special people. We firmly adhere to a mythical sense that all people are equal. Those that are given special consideration are disliked. Being special is UnAmerican! This message is not subtle but overt. It extends well beyond air travel. At board of education meetings i have heard again and again why is so much money spent on special education. Regular kids suffer I am told. Need a lift on the bus? Why not just pay a taxi to take the child to school? Think of how much money we will save.
The thoughts above were prompted by an article in of all places the sports section of the NY Post. A tabloid not exactly known for quality. The article in question, Even TSA Employees are Scamming, by Phil Mushnick was published September 11. Mushnick was outraged that a TSA employee at Newark airport was willing to take passengers off the security line and directly to the front of the line. This was accomplished by sitting in a wheelchair. You see at most airports people with a disability do not wait on security lines. There is a special lane for people with disabilities. It is one of those rare instances using a wheelchair is an advantage. While I enjoy this advantage, especially when security lines are long, I think it is wrong. I should wait in line like everyone else. If I were standing in line I would be resentful of such special treatment. And this is the problem with special. I am not equal. So called special accommodations only lead to unequal treatment. Special buses, resource rooms in schools, handicapped seating--none of this fosters equality but instead segregation in a socially accepted form.
I will confess I have never seen the scam Mushnick described taking place at Newark. I would like to think I would make a complaint but upsetting the routine at airports is a very bad idea. Subservience is required when Americans travel. Humiliation rituals abound such as passing through security and passengers are expected to do as they are told by airline personnel. Rigid control is expected. Within these larger cultural parameters there is no place for me. I am dubbed special--a categorization that is inherently problematic and unequal. It also reminds me of Kermit the Frog--one of my sons favorite characters on television when he was a little boy--who maintained it is not easy being green. I can only concur with this assessment.
Aside from being perceived as extra labor, airlines I suspect resent giving passengers with disabilities "special" treatment. Special for me involves getting the bulkhead seat--never easy given the fact these seats are sold to any passenger willing to fork over $40 for a few extra inches of leg room. Special also means I am the first person on the plane and the very last person off the plane. I do mean last as in the very last passenger off the plane. Every time I fly I get to see the flight crew depart and cleaning crew come aboard while I wait for "trained personnel" to help me onto what the airlines call a straight back. This is a very narrow wheelchair that fits in the aisle of the plane. More often than not the trained personnel have no idea what they are doing. Each time I flew this summer multiple FAA regulations were violated assisting me off the plane. Waits for the trained personnel are common. I often get to sit on an empty plane waiting. Forget about making connecting flights in a reasonable amount of time. The special treatment I receive adds hours of time to my travel experience. Airlines do not care one iota. What is very clear is that my existence is of the lowest priority. First on last off--too bad. Cope with it. We will help you when we have assisted every other passenger--and I do mean every other passenger.
I am lumped by airlines into a group of special people. Children, elderly, and pets. Don't believe me? Check out any airline website. I am deemed a "passenger with special needs". If I have learned one thing in life it is that we Americans loath so called special people. We firmly adhere to a mythical sense that all people are equal. Those that are given special consideration are disliked. Being special is UnAmerican! This message is not subtle but overt. It extends well beyond air travel. At board of education meetings i have heard again and again why is so much money spent on special education. Regular kids suffer I am told. Need a lift on the bus? Why not just pay a taxi to take the child to school? Think of how much money we will save.
The thoughts above were prompted by an article in of all places the sports section of the NY Post. A tabloid not exactly known for quality. The article in question, Even TSA Employees are Scamming, by Phil Mushnick was published September 11. Mushnick was outraged that a TSA employee at Newark airport was willing to take passengers off the security line and directly to the front of the line. This was accomplished by sitting in a wheelchair. You see at most airports people with a disability do not wait on security lines. There is a special lane for people with disabilities. It is one of those rare instances using a wheelchair is an advantage. While I enjoy this advantage, especially when security lines are long, I think it is wrong. I should wait in line like everyone else. If I were standing in line I would be resentful of such special treatment. And this is the problem with special. I am not equal. So called special accommodations only lead to unequal treatment. Special buses, resource rooms in schools, handicapped seating--none of this fosters equality but instead segregation in a socially accepted form.
I will confess I have never seen the scam Mushnick described taking place at Newark. I would like to think I would make a complaint but upsetting the routine at airports is a very bad idea. Subservience is required when Americans travel. Humiliation rituals abound such as passing through security and passengers are expected to do as they are told by airline personnel. Rigid control is expected. Within these larger cultural parameters there is no place for me. I am dubbed special--a categorization that is inherently problematic and unequal. It also reminds me of Kermit the Frog--one of my sons favorite characters on television when he was a little boy--who maintained it is not easy being green. I can only concur with this assessment.
Hurricane Irene Highlights Inequality
Saturday, September 3, 2011
Hurricane Irene blew into the New England area Saturday night or early Sunday morning. In comparison to others I fared well. No trees came down on my property. The only damaged trees were my favorites--two American Chestnuts. The only problem I had was a loss of power. The power went out at 3:30AM Sunday. The power did not come back on until late Thursday evening. Four full days without power sucks. No power means no water, flushing toilets or showers. By Thursday I was, how shall we say it, ripe. No computer too hence no work. What I experienced was a minor inconvenience. The last four days made me realize just how utterly dependent we are on electricity. I also realized how lucky I was--I did not need to evacuate my home and go to a hurricane shelter. If I had to do this I would have been in deep trouble. I cannot go to any shelter--I need a shelter that is accessible. By accessible I mean a building I can enter. I would need a bathroom I can get in and a cot I can transfer on. Pretty basic. Not so fast. It is not so basic.
Thanks to two excellent posts by Not Dead Yet on August 29 and 31, I was deeply troubled to learn, but hardly surprised, that many New York City shelters in low lying areas were not accessible. No mainstream media outlet, television news or newspaper, picked up this story. Two news outlets, Public News Service and NY1, did short stories. That was it. This shocks me. We had full media saturation about the hurricane that was damn near hysterical. The lack of accessible shelters has been detailed by Not Dead Yet. I urge readers to read what Stephen Drake, Susan Dooha and Paul Timmons wrote on August 29 and 31. Timmons has experience with disaster relief, Dooha is the Executive director of the Center for Independence of the Disabled New York, and Drake is a research analyst at Not Dead Yet. These people know what they are talking about. Timmons and Dooha have tried to make access issues a concern for FEMA and VOAD. Much money has been spent, many meetings have been held and yet virtually nothing has been accomplished. This is what Dooha witnessed:
"I went to 6 shelters in Manhattan, Brooklyn and Queens serving people in Red Hook, Fort Green, Long Island City and Lower Manhattan. I found: dangerous ramps leading to locked doors; food up flights of stairs that people with disabilities would not be able to climb; inaccessible bathrooms; cots that would be unusable by people using wheelchairs; lack of volunteers trained to deal with these issues; reliance on elevators (where they existed) that would go out in the event of a power outage; accessibility signage leading to locked doors; reliance on inaccessible transportation (school buses) etc."
The gross lack of access described by Dooha is not acceptable. Need I remind everyone of the disgraceful response to Hurricane Katrina? And what about of 9/11? We have had ten years to prepare for a disaster and somehow shelters and transportation remain inaccessible. Timmons sourly noted: "The fact there's somebody in a wheelchair sitting in on the meetings makes everybody feel all warm and fuzzy. But almost always, any attention to people with disabilities stops there." There really is only one conclusion to be reached--in a very real and practical way the powers that be, FEMA and the Red Cross, do not value the lives of people with disabilities. We are expendable--and acceptable loss of life. To quote Timmons again "The Overlords of the emergency management community have shown to an indisputable certainty that they don't really care whether we live or die.
And ya know what? As I wrote that last line, it occurred to me: it's not entirely accurate. The reality is...they're actually trying to kill us."
Timmons words are inflammatory. I doubt FEMA is trying to kill us deliberately. Yet FEMAs total disregard to access will indeed lead to the deaths of people with disabilities. This has taken place in the past and based on what I have read is still very much a deadly problem--one that need not exist. But exist it does. Hence I live with the sober realization that if a natural disaster took place tomorrow I would be on my own. My odds of survival would be dim at best. This makes me angry and depressed. It is a not so subtle reminder I am far from equal to those that are bipedal.
Thanks to two excellent posts by Not Dead Yet on August 29 and 31, I was deeply troubled to learn, but hardly surprised, that many New York City shelters in low lying areas were not accessible. No mainstream media outlet, television news or newspaper, picked up this story. Two news outlets, Public News Service and NY1, did short stories. That was it. This shocks me. We had full media saturation about the hurricane that was damn near hysterical. The lack of accessible shelters has been detailed by Not Dead Yet. I urge readers to read what Stephen Drake, Susan Dooha and Paul Timmons wrote on August 29 and 31. Timmons has experience with disaster relief, Dooha is the Executive director of the Center for Independence of the Disabled New York, and Drake is a research analyst at Not Dead Yet. These people know what they are talking about. Timmons and Dooha have tried to make access issues a concern for FEMA and VOAD. Much money has been spent, many meetings have been held and yet virtually nothing has been accomplished. This is what Dooha witnessed:
"I went to 6 shelters in Manhattan, Brooklyn and Queens serving people in Red Hook, Fort Green, Long Island City and Lower Manhattan. I found: dangerous ramps leading to locked doors; food up flights of stairs that people with disabilities would not be able to climb; inaccessible bathrooms; cots that would be unusable by people using wheelchairs; lack of volunteers trained to deal with these issues; reliance on elevators (where they existed) that would go out in the event of a power outage; accessibility signage leading to locked doors; reliance on inaccessible transportation (school buses) etc."
The gross lack of access described by Dooha is not acceptable. Need I remind everyone of the disgraceful response to Hurricane Katrina? And what about of 9/11? We have had ten years to prepare for a disaster and somehow shelters and transportation remain inaccessible. Timmons sourly noted: "The fact there's somebody in a wheelchair sitting in on the meetings makes everybody feel all warm and fuzzy. But almost always, any attention to people with disabilities stops there." There really is only one conclusion to be reached--in a very real and practical way the powers that be, FEMA and the Red Cross, do not value the lives of people with disabilities. We are expendable--and acceptable loss of life. To quote Timmons again "The Overlords of the emergency management community have shown to an indisputable certainty that they don't really care whether we live or die.
And ya know what? As I wrote that last line, it occurred to me: it's not entirely accurate. The reality is...they're actually trying to kill us."
Timmons words are inflammatory. I doubt FEMA is trying to kill us deliberately. Yet FEMAs total disregard to access will indeed lead to the deaths of people with disabilities. This has taken place in the past and based on what I have read is still very much a deadly problem--one that need not exist. But exist it does. Hence I live with the sober realization that if a natural disaster took place tomorrow I would be on my own. My odds of survival would be dim at best. This makes me angry and depressed. It is a not so subtle reminder I am far from equal to those that are bipedal.
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