Earlier today I lauded Stephen Kuusisto's "Disabilities: Forms of a Fair Kind Among Us". He followed up this remarkable post today, June 30, with "How Many Things Are Required of a Person With a Disability to Be Beautiful?" Kuusisto began his post with a quote from Marsilio Ficino, a Platonist with whom I am not too familiar with. However, I understand why Kuusisto was drawn to the following quote: "What then is the beauty of the body? Activity, vivacity, and a certain grace shining in the body because of the infusion of its own ideas". Kuusisto thinks we people with a disability should steal this line and that we are beautiful in a Dionysian way. I am no expert on the dichotomy between Apollonan and Dianysian as discussed by Nietzsche but I do know a good bit about the history of anthropology. One of the most famous American anthropologists, Ruth Benedict, was interested in Nietzsche's work and helped develop a specialization called culture and personality--a field I have never liked. Benedict studied the Zuni culture and found "the basic contrast between the Pueblos and the other cultures of North America is the contrast that is named and described by Nietzsche in his studies of Greek tragedy". I am not so sure such a sweeping generalization can be supported by the ethnographic facts. Nor can I accept Kuusisto's generalization that people with disability are Dionysian. Sure we people with a disability have adapted, put our bodies back together in a way that is not idealized. This does not mean we accept our current form--think Chris Reeve and all those that peddle a cure for spinal cord injury. I have no doubt though that all people with a disability can relate to Dionysian experiences as we must control our rage and fury over the manner in which we are disrespected and stigmatized. Controlling these emotions turns us toward the Apollonian and controlled we must be. By controlled I mean we must channel our rage in a positive form. For me, and strongly suspect for kuusisto, that rage takes the form of writing about disability rights.
The dichotomy between Apollonian and Dionysian is thought provoking yet fails to measure up to my need for empirical evidence. I am afterall a social scientist and not a poet and do not have the luxury of making assumptions about societies or the personalities of people. This is in part why Ruth Benedict's work fell out of favor in anthropology but left a lasting impression and legacy. Her efforts to find patterns in culture to borrow the title of her most famous book was evocative. Perhaps Kuusisto is onto something here--if we people with a disability are Dionysian we surely are complex creatures and thus cannot be reduced to ableist stereotypes. We remain unique individuals with our respective quirks despite our similarities. If we are unique, and I think we are, we cannot be characterized as Apollonian or Dianysian.
Wednesday, June 30, 2010
I Believe
There are many wonderful writers in the field of disability studies. Foremost among them in my estimation is Stephen Kuusisto. His writing is complex and simple, funny and serious--it draws the reader in a primal way. I for one cannot stop reading his work. In short, I have a literary crush and frankly wish I could write half as well. Today I read his post "Disabilities: Forms of a Fair Kind Among Us" at Planet of the Blind (June 29) and continue to be amazed by Kuusisto's ability to make my mind come alive like a pinball machine wizard. Kuusisto maintains that disabilities are a fiction and that every day "people with disabilities must negotiate two dynamics: the literal materiality of physical systems, and (far worse) the figurative errors of hyper-semiotic normate culture--a culture addicted to a heavily marketed and entirely false idea of physical perfection". Amen, brother! To this I would add we people with a disability pay a heavy price for our failure to conform to accepted notions of physical perfection. American culture is not designed, physically or socially, for people with disabilities. We are not wanted, our presence an odious reminder of all that can wrong with the human body. This manifests itself is half hearted attempts at physical access under taken only because it is the law. And as Kuusisto writes, worse yet, are the social implications when one cannot meet minimum standards of physical perfection--minimal hear meaning the ability to walk, see, hear or think in way deemed normal. These observations led Kuusisto to write the following: read the words below very carefully:
"What do I believe? I believe that people with disabilities have a certain inner balance, a richness and clarity of their own natures. I believe that people with disabilities possess inherently beautiful forms for all form is composed of lines and planes, twists, colors, diverse arrangements. And all the better.
The interior lives of people with disabilities are harmonious with the diversity of nature itself. These things I believe. I believe the soul needs nothing added to it to be beautiful. I believe all figures of creation are beautiful. I am rooted in this. I find I cannot be moved.
What do I believe? I believe Peter Singer doesn't know enough about art. I believe that wounded warriors are only measured by the spread of our welcoming arms. I believe that one day we will look on the age of Hollywood and Milan and Madison Avenue and cluck our tongues at the slavishness of conformity and the simplicity of taste and habits that ruled these times. I'm not saying this revolution is coming tomorrow.
What do I believe? I believe in the beauty of aging. Like Ficino I believe the body is subject to time and time is beautiful. I am rooted in this. I find I cannot be moved.
What do I believe?
Art can deceive us and it can save us."
In a word, wow! I share Kuusisto's beliefs. I too believe in people with disabilities. I never see limitations when I observe one of my peers--I see human potential. I see people that have adapted, overcome baseless prejudice, endured, survived, and thrived. I see unique life forms that move and think like no other. But I am not convinced, as is Kuusisto, that art can save us. I think art must be taught and fostered. I believe that not all people are good and that for some human empathy and understanding is not possible. Some people want power and money and don't care about how they acquire it. Like all people with a disability that have put thought into their social condition, I have seen the dark side of society. Here I refer to the larger social significance of the bigotry people with a disability still encounter. This takes many forms and has profound implications beyond negative personal interactions--for instance draconian budget cuts by states from New York to California that target the most vulnerable that are the norm and widely supported in this dismal economy. Perhaps this is what Kuusisto meant when he wrote that "art can deceive us".
So what do I believe? I believe art can only save us if we force others to see its beauty. I believe people with a disability will never be equal until we force the so called normate to perceive us as equals. I believe we must demand social and architectural equality. That demand must be accepted by all. Only then will real access in every sense of the term be achieved. I believe we must help ourselves and embrace the people on the forefront of the fight for equality. ADAPT and Not Dead Yet for example must be widely acknowledged and its accomplishments lauded. They are in my estimation the special forces of the disability rights movement. Please note the obvious use of military metaphors. For us to be equal, for our art to be recognized, we must fight. I for one will not nor have I ever allowed myself to believe I am any less human than a bipedal person that towers over me as I sit in my wheelchair. To think otherwise is to accept a trip into social oblivion. Hence all people with a disability must not only demand but expect to be treated equally and with respect. This is not an easy road to traverse. One wins few friends and alienates those normates unwilling to change their preconceived ideas about disability. Like Kuusisto what I believe cannot be moved. But I would add the proviso that we must move others, force them to think and acknowledge the great contribution we people with a disability can make to society.
"What do I believe? I believe that people with disabilities have a certain inner balance, a richness and clarity of their own natures. I believe that people with disabilities possess inherently beautiful forms for all form is composed of lines and planes, twists, colors, diverse arrangements. And all the better.
The interior lives of people with disabilities are harmonious with the diversity of nature itself. These things I believe. I believe the soul needs nothing added to it to be beautiful. I believe all figures of creation are beautiful. I am rooted in this. I find I cannot be moved.
What do I believe? I believe Peter Singer doesn't know enough about art. I believe that wounded warriors are only measured by the spread of our welcoming arms. I believe that one day we will look on the age of Hollywood and Milan and Madison Avenue and cluck our tongues at the slavishness of conformity and the simplicity of taste and habits that ruled these times. I'm not saying this revolution is coming tomorrow.
What do I believe? I believe in the beauty of aging. Like Ficino I believe the body is subject to time and time is beautiful. I am rooted in this. I find I cannot be moved.
What do I believe?
Art can deceive us and it can save us."
In a word, wow! I share Kuusisto's beliefs. I too believe in people with disabilities. I never see limitations when I observe one of my peers--I see human potential. I see people that have adapted, overcome baseless prejudice, endured, survived, and thrived. I see unique life forms that move and think like no other. But I am not convinced, as is Kuusisto, that art can save us. I think art must be taught and fostered. I believe that not all people are good and that for some human empathy and understanding is not possible. Some people want power and money and don't care about how they acquire it. Like all people with a disability that have put thought into their social condition, I have seen the dark side of society. Here I refer to the larger social significance of the bigotry people with a disability still encounter. This takes many forms and has profound implications beyond negative personal interactions--for instance draconian budget cuts by states from New York to California that target the most vulnerable that are the norm and widely supported in this dismal economy. Perhaps this is what Kuusisto meant when he wrote that "art can deceive us".
So what do I believe? I believe art can only save us if we force others to see its beauty. I believe people with a disability will never be equal until we force the so called normate to perceive us as equals. I believe we must demand social and architectural equality. That demand must be accepted by all. Only then will real access in every sense of the term be achieved. I believe we must help ourselves and embrace the people on the forefront of the fight for equality. ADAPT and Not Dead Yet for example must be widely acknowledged and its accomplishments lauded. They are in my estimation the special forces of the disability rights movement. Please note the obvious use of military metaphors. For us to be equal, for our art to be recognized, we must fight. I for one will not nor have I ever allowed myself to believe I am any less human than a bipedal person that towers over me as I sit in my wheelchair. To think otherwise is to accept a trip into social oblivion. Hence all people with a disability must not only demand but expect to be treated equally and with respect. This is not an easy road to traverse. One wins few friends and alienates those normates unwilling to change their preconceived ideas about disability. Like Kuusisto what I believe cannot be moved. But I would add the proviso that we must move others, force them to think and acknowledge the great contribution we people with a disability can make to society.
Monday, June 28, 2010
ADA Fantasy Land
Tom Harkin has been a long time advocate of disability rights. We need people like Harkin. He is man of power, well connected, and at a fundamental level gets disability rights. All this is good. But when I read the below I wondered if he has lost touch with reality. Below is what Harkin wrote for Ability Magazine in the June July issue. I quote the article in its entirety so reader will be able to understand my annoyance.
As we all know, this year marks the 20th anniversary of the Americans with Disabilities Act (ADA). As chief sponsor of the ADA in the Senate, I will always remember the day it was signed into law—July 26, 1990—as one of the proudest in my legislative career.
We have come a long way in the last 20 years. Before the ADA, life was very different for people with disabilities, and discrimination was both commonplace and accepted.
I still recall the hearings we conducted in both the Senate and the House, and the testimony of so many individuals with disabilities from all across America about the discrimination that they faced on a daily basis.
We heard stories of individuals who had to crawl on their hands and knees to go up a flight of stairs or to gain access to their local swimming pools. Stories of individuals who couldn’t ride on a bus because there wasn’t a lift. Stories of individuals who couldn’t go to concerts or ballgames because there was no accessible seating. Stories of individuals who could not even cross the street in their wheelchairs because there were no curb cuts. Stories of individuals who could not buy a pair of shoes or go to the movies. In short, stories of millions of Americans who were denied access to their own communities—and to the American dream.
Passage of the ADA was a bipartisan effort. As chief sponsor in the Senate, I worked very closely with people on both sides of the aisle, both in Congress and in the Administration. Senators Ted Kennedy and Bob Dole were indispensible allies. We received invaluable support from President George Herbert Walker Bush and key members of his administration, including White House counsel Boyden Gray and Attorney General Dick Thornburgh. And there were so many others—Justin Dart, advocates, other members of Congress and the Administration—whose commitment and support were instrumental in helping pass the ADA. The final vote on the ADA (91 to 6 in the Senate) sent a resounding message that this nation would no longer tolerate isolation, segregation and second-class citizenship for people with disabilities.
Over the last two decades, we have made truly amazing progress. Streets, buildings, sports arenas and transportation systems are more accessible for people with physical impairments. Information is offered in alternative formats, so that it is usable by individuals with visual or hearing difficulties. New communications and information technologies that are accessible to people with disabilities continue to be developed.
Because of the employment provisions in the ADA, many individuals with disabilities are now able to get reasonable accommodations on the job, such as assistive technology, or accessible work environments, or more flexible schedules. These reasonable accommodations are important tools in ensuring that people with disabilities have an equal opportunity in the workplace.
These changes are all around us. In fact, today they are so integrated into our daily lives that it is sometimes hard to remember how the world used to be.
Just as important, we have seen an enormous change in attitudes toward people with disabilities. Our expectation is that we will do what it takes to give individuals with disabilities not just physical access, but equal opportunity in our schools, in our workplaces, and in all areas of our economy and society.
Today we recognize that, like all people, people with disabilities have unique abilities, talents and aptitudes. And America is better, fairer and richer when we make full use of those gifts.
Every individual with a disability deserves a chance to realize the four great goals of the ADA: equal opportunity, full participation, independent living and economic self-sufficiency.
However, progress under the ADA only happens when people—people like you—understand what the law requires, and then choose to make it a priority to ensure that individuals with disabilities are included in all aspects of community life.
It’s one thing for people with disabilities to have rights on paper and a very different thing to know that they enjoy those rights in everyday practice, especially in their communities and in the workplace. We are in an ongoing fight, a never-ending struggle, to vindicate those rights.
To those of you who are on the front lines in this struggle: I thank you for the work you do every day to ensure that ADA is alive and vibrant in your communities, opening doors of opportunity and breaking down barriers of discrimination.
We have continued to advance the rights of individuals with disabilities and the four goals of the ADA with the recent passage of the ADA Amendments Act, which restored our original Congressional intent, in respect to who is covered by the ADA. We also passed the Community First Choice Option, which will increase the availability of home and community-based services for people with disabilities.
And yet, our work is not yet done. An ongoing challenge is to increase employment opportunities for individuals with disabilities. Recent surveys show that only 37 percent of individuals with disabilities are employed. These are individuals who want to work, but who are unemployed due to a variety of factors. Many individuals lack adequate support services, some employers are not providing reasonable accommodations, and others are still reluctant to hire people with disabilities.
As a consequence, an estimated 21 million people with disabilities are not employed. We must break down the barriers that prevent or discourage individuals with disabilities from working and having the opportunity for economic self-sufficiency, as we promised in the ADA. That is why I will be hosting a two-day Congressional summit in the fall that will focus on the employment of individuals with disabilities in America.
On July 26, 1990, when he signed ADA into law, President George Herbert Walker Bush spoke with great eloquence. I will never forget his final words before taking up his pen. He said, “Let the shameful wall of exclusion finally come tumbling down.”
Today, that wall is indeed falling. The ADA has opened doors, created opportunities and transformed lives. Together, we can help ensure a future of even greater inclusion, equality and opportunity for all Americans.
by Senator Tom Harkin
I don't like the Ability Magazine--it is the happy paper of disability hence Harkin's rosy view of the ADA is to be expected. Harkin is correct in much of what he writes about. Ramps, elevators, and physical access to building has improved greatly. I too laud wheelchair access and directly benefit from this form of architectural equality. Like other Americans, I can go to a baseball game and, assuming the stadium is new, have a wide choices of places to sit. I also agree closed captioning and other forms of adaptive communication has improved greatly. These physical changes in the environment are wonderful and were indeed spearheaded by the ADA. Without the ADA much of our country would not be accessible. But this access has come at a cost and we have a very long way to go before people with a disability are remotely equal. The 20th anniversary is not the time for disability rights advocates to slap themselves on the back and say "job well done" as Harkin has done. The ADA has utterly failed to change the public perception of disability nor ameliorate the social bigotry that remains the norm. People unfamiliar with disability see little blue wheelchair symbols plastered on the wall and think the problem was solved long ago. I assure you the problem is not resolved. Access, physical and social, is illusive at best. Disability rights and civil rights are not thought of as remotely similar and this represents a major failure of the ADA. I remain stunned by my social experiences that demonstrate the woeful ignorance of others with regard to disability rigths. Two examples should suffice:
Example 1: My son graduated from high-school last week. The facility was accessible in every way possible. When I arrived there was no sign about handicapped parking which on this rare occasion I was going to use. I was directed by a person directing traffic who proceeded to yell "handicapper" to the next man directing traffic. This yell was repeated again and again. Yes, I am not human I am Mr. Handicapper! After dropping off my son I looked for a spot to sit. A chair had to be removed and the usher that removed the chair treated me as though I had no brain. He spoke to me like a child. By the time the ceremony started I was ready to punch someone in the nose. Equal I was not.
Example 2: I was at a baseball game with a friend's 12 year old child. Yes, the new stadium is accessible and has a host of seats for me to choose from. Why I can even got to the bathroom. I was hyper alert with this kid as I was the responsible adult looking after her. All went well until we tried to leave via the elevator. One elevator was blocked off for VIP ticket holders. The line for the other elevator was very long and I would estimate 20 people cut in front of us. I politely complained to a nearby usher and he told me "oh, that happens all the time. You people are good at waiting so just be patient. There is nothing I can do to help you". Again, equal I am not.
Equality in the examples above is not remotely a consideration much less a concept others have accepted. Yes, I can get into buildings, attend a baseball game and graduation, but that does not mean in any way I am equal. Imagine what would have happened at my son's graduation or at the elevator if I replaced the word handicap with black. Imagine the outrage if I were segregated to a "black elevator" or the presence of a "black man" was yelled from one car attendant to another. It would have been socially unacceptable at least and for most with any sense of equality a major civil rights violation. But I am not black. I am just your average middle aged crippled dude whose presence is tolerated but humanity and equality denied. When I wonder is this going to change? Harkin's words are not going to help the present lack of social equality. Indeed, I think the little coverage the 20th anniversary of the ADA will garner in the mainstream media is going to be counter productive. We people in the disability rights movement have a long way to go until we are truly equal. And that my friend is what we should be focusing on.
As we all know, this year marks the 20th anniversary of the Americans with Disabilities Act (ADA). As chief sponsor of the ADA in the Senate, I will always remember the day it was signed into law—July 26, 1990—as one of the proudest in my legislative career.
We have come a long way in the last 20 years. Before the ADA, life was very different for people with disabilities, and discrimination was both commonplace and accepted.
I still recall the hearings we conducted in both the Senate and the House, and the testimony of so many individuals with disabilities from all across America about the discrimination that they faced on a daily basis.
We heard stories of individuals who had to crawl on their hands and knees to go up a flight of stairs or to gain access to their local swimming pools. Stories of individuals who couldn’t ride on a bus because there wasn’t a lift. Stories of individuals who couldn’t go to concerts or ballgames because there was no accessible seating. Stories of individuals who could not even cross the street in their wheelchairs because there were no curb cuts. Stories of individuals who could not buy a pair of shoes or go to the movies. In short, stories of millions of Americans who were denied access to their own communities—and to the American dream.
Passage of the ADA was a bipartisan effort. As chief sponsor in the Senate, I worked very closely with people on both sides of the aisle, both in Congress and in the Administration. Senators Ted Kennedy and Bob Dole were indispensible allies. We received invaluable support from President George Herbert Walker Bush and key members of his administration, including White House counsel Boyden Gray and Attorney General Dick Thornburgh. And there were so many others—Justin Dart, advocates, other members of Congress and the Administration—whose commitment and support were instrumental in helping pass the ADA. The final vote on the ADA (91 to 6 in the Senate) sent a resounding message that this nation would no longer tolerate isolation, segregation and second-class citizenship for people with disabilities.
Over the last two decades, we have made truly amazing progress. Streets, buildings, sports arenas and transportation systems are more accessible for people with physical impairments. Information is offered in alternative formats, so that it is usable by individuals with visual or hearing difficulties. New communications and information technologies that are accessible to people with disabilities continue to be developed.
Because of the employment provisions in the ADA, many individuals with disabilities are now able to get reasonable accommodations on the job, such as assistive technology, or accessible work environments, or more flexible schedules. These reasonable accommodations are important tools in ensuring that people with disabilities have an equal opportunity in the workplace.
These changes are all around us. In fact, today they are so integrated into our daily lives that it is sometimes hard to remember how the world used to be.
Just as important, we have seen an enormous change in attitudes toward people with disabilities. Our expectation is that we will do what it takes to give individuals with disabilities not just physical access, but equal opportunity in our schools, in our workplaces, and in all areas of our economy and society.
Today we recognize that, like all people, people with disabilities have unique abilities, talents and aptitudes. And America is better, fairer and richer when we make full use of those gifts.
Every individual with a disability deserves a chance to realize the four great goals of the ADA: equal opportunity, full participation, independent living and economic self-sufficiency.
However, progress under the ADA only happens when people—people like you—understand what the law requires, and then choose to make it a priority to ensure that individuals with disabilities are included in all aspects of community life.
It’s one thing for people with disabilities to have rights on paper and a very different thing to know that they enjoy those rights in everyday practice, especially in their communities and in the workplace. We are in an ongoing fight, a never-ending struggle, to vindicate those rights.
To those of you who are on the front lines in this struggle: I thank you for the work you do every day to ensure that ADA is alive and vibrant in your communities, opening doors of opportunity and breaking down barriers of discrimination.
We have continued to advance the rights of individuals with disabilities and the four goals of the ADA with the recent passage of the ADA Amendments Act, which restored our original Congressional intent, in respect to who is covered by the ADA. We also passed the Community First Choice Option, which will increase the availability of home and community-based services for people with disabilities.
And yet, our work is not yet done. An ongoing challenge is to increase employment opportunities for individuals with disabilities. Recent surveys show that only 37 percent of individuals with disabilities are employed. These are individuals who want to work, but who are unemployed due to a variety of factors. Many individuals lack adequate support services, some employers are not providing reasonable accommodations, and others are still reluctant to hire people with disabilities.
As a consequence, an estimated 21 million people with disabilities are not employed. We must break down the barriers that prevent or discourage individuals with disabilities from working and having the opportunity for economic self-sufficiency, as we promised in the ADA. That is why I will be hosting a two-day Congressional summit in the fall that will focus on the employment of individuals with disabilities in America.
On July 26, 1990, when he signed ADA into law, President George Herbert Walker Bush spoke with great eloquence. I will never forget his final words before taking up his pen. He said, “Let the shameful wall of exclusion finally come tumbling down.”
Today, that wall is indeed falling. The ADA has opened doors, created opportunities and transformed lives. Together, we can help ensure a future of even greater inclusion, equality and opportunity for all Americans.
by Senator Tom Harkin
I don't like the Ability Magazine--it is the happy paper of disability hence Harkin's rosy view of the ADA is to be expected. Harkin is correct in much of what he writes about. Ramps, elevators, and physical access to building has improved greatly. I too laud wheelchair access and directly benefit from this form of architectural equality. Like other Americans, I can go to a baseball game and, assuming the stadium is new, have a wide choices of places to sit. I also agree closed captioning and other forms of adaptive communication has improved greatly. These physical changes in the environment are wonderful and were indeed spearheaded by the ADA. Without the ADA much of our country would not be accessible. But this access has come at a cost and we have a very long way to go before people with a disability are remotely equal. The 20th anniversary is not the time for disability rights advocates to slap themselves on the back and say "job well done" as Harkin has done. The ADA has utterly failed to change the public perception of disability nor ameliorate the social bigotry that remains the norm. People unfamiliar with disability see little blue wheelchair symbols plastered on the wall and think the problem was solved long ago. I assure you the problem is not resolved. Access, physical and social, is illusive at best. Disability rights and civil rights are not thought of as remotely similar and this represents a major failure of the ADA. I remain stunned by my social experiences that demonstrate the woeful ignorance of others with regard to disability rigths. Two examples should suffice:
Example 1: My son graduated from high-school last week. The facility was accessible in every way possible. When I arrived there was no sign about handicapped parking which on this rare occasion I was going to use. I was directed by a person directing traffic who proceeded to yell "handicapper" to the next man directing traffic. This yell was repeated again and again. Yes, I am not human I am Mr. Handicapper! After dropping off my son I looked for a spot to sit. A chair had to be removed and the usher that removed the chair treated me as though I had no brain. He spoke to me like a child. By the time the ceremony started I was ready to punch someone in the nose. Equal I was not.
Example 2: I was at a baseball game with a friend's 12 year old child. Yes, the new stadium is accessible and has a host of seats for me to choose from. Why I can even got to the bathroom. I was hyper alert with this kid as I was the responsible adult looking after her. All went well until we tried to leave via the elevator. One elevator was blocked off for VIP ticket holders. The line for the other elevator was very long and I would estimate 20 people cut in front of us. I politely complained to a nearby usher and he told me "oh, that happens all the time. You people are good at waiting so just be patient. There is nothing I can do to help you". Again, equal I am not.
Equality in the examples above is not remotely a consideration much less a concept others have accepted. Yes, I can get into buildings, attend a baseball game and graduation, but that does not mean in any way I am equal. Imagine what would have happened at my son's graduation or at the elevator if I replaced the word handicap with black. Imagine the outrage if I were segregated to a "black elevator" or the presence of a "black man" was yelled from one car attendant to another. It would have been socially unacceptable at least and for most with any sense of equality a major civil rights violation. But I am not black. I am just your average middle aged crippled dude whose presence is tolerated but humanity and equality denied. When I wonder is this going to change? Harkin's words are not going to help the present lack of social equality. Indeed, I think the little coverage the 20th anniversary of the ADA will garner in the mainstream media is going to be counter productive. We people in the disability rights movement have a long way to go until we are truly equal. And that my friend is what we should be focusing on.
Wednesday, June 23, 2010
We are Working Hard: Reality is Different
If there is one thing I do not have the patience for it is what I call being stroked. People with a disability will know what I am referring to. You arrive at a building and access is limited and there is no accessible bathroom. You find out who is responsible for making the facility accessible and are told the problem is being worked on. This person assures you with great sincerity that access is very important. You are told that "they are working hard on the problem". Fast forward two years, three years or five years later and the problem is still being worked on. Yes, they are working very hard--they are working very hard to con people with a disability and lead you to believe access is a priority. If you believe any person that tells you they are "working hard" on the issue of access than I have a bridge for sale in Brooklyn. What they want is for your crippled ass to go away and never come back. You my friend are not a priority. If you were access issues would be resolved promptly.
The above thoughts came to me as I read an article about how captions are coming--slowly--to internet sites. Closed captioning is mandatory on television but not for programing on the internet. Thus I thought of the actress Marlee Matlin. A truly beautiful woman who two years ago made a short lived splash as a deaf person on the show Dancing with the Stars. Viewers were amazed a deaf person could dance. How inspiring! Spare me! At the time Matlin appeared on the show she was assured that ABC was working hard on the problem of captioning. Fast forward two years later and ABC.com is still working on the problem of captioning on the internet. Two years. In terms of internet technology two years is an eternity. Anyone who purchases a computer knows the machine they purchase is obsolete within months and two years for some is the expected life expectancy of a machine. So, why is ABC still working hard on the problem? The answer is simple: captioning is not a priority. ABC does not care. If I have learned one thing after thirty years of using a wheelchair it is that social and architectural change only comes with a fight. ABC and popular websites such as Hulu, You Tube, Netflix among many others have failed to value captioning. It should be included as part of every single video posted on line. I do not think this is an unreasonable expectation. Every new building constructed is supposed to be accessible. Why not make every new video posted starting tomorrow have captioning. I can just hear the howls of protest. I am being unreasonable. My request, not the word here, request, is impossible to achieve immediately. I am told we need time to work on the problem of captioning. Exactly how much time does ABC need and who is working on the problem? How many hours are spent per day and how many individual have been assigned to the task? Answers to these questions will never be revealed because they would demonstrate the time and energy spent on the problem are negligible. This is infuriating. I would rather be told the truth than lied to and mislead. But lies are the norm as are misleading statements. Hence when I am told someone is working on the problem of access I translate this to mean two things: first, I should go away and never come back; second, no one is really working on the problem. The only way to change this cultural response, that is force people not to blow you off with false promises is to fight--make a stink, threaten a law suit, garner bad publicity etc. Being patient does not work. Exceptions do exist but they are rare and noteworthy. The norm is resistance. Afterall, do you really believe it takes ABC more than two years to solve the problem of captioning?
The above thoughts came to me as I read an article about how captions are coming--slowly--to internet sites. Closed captioning is mandatory on television but not for programing on the internet. Thus I thought of the actress Marlee Matlin. A truly beautiful woman who two years ago made a short lived splash as a deaf person on the show Dancing with the Stars. Viewers were amazed a deaf person could dance. How inspiring! Spare me! At the time Matlin appeared on the show she was assured that ABC was working hard on the problem of captioning. Fast forward two years later and ABC.com is still working on the problem of captioning on the internet. Two years. In terms of internet technology two years is an eternity. Anyone who purchases a computer knows the machine they purchase is obsolete within months and two years for some is the expected life expectancy of a machine. So, why is ABC still working hard on the problem? The answer is simple: captioning is not a priority. ABC does not care. If I have learned one thing after thirty years of using a wheelchair it is that social and architectural change only comes with a fight. ABC and popular websites such as Hulu, You Tube, Netflix among many others have failed to value captioning. It should be included as part of every single video posted on line. I do not think this is an unreasonable expectation. Every new building constructed is supposed to be accessible. Why not make every new video posted starting tomorrow have captioning. I can just hear the howls of protest. I am being unreasonable. My request, not the word here, request, is impossible to achieve immediately. I am told we need time to work on the problem of captioning. Exactly how much time does ABC need and who is working on the problem? How many hours are spent per day and how many individual have been assigned to the task? Answers to these questions will never be revealed because they would demonstrate the time and energy spent on the problem are negligible. This is infuriating. I would rather be told the truth than lied to and mislead. But lies are the norm as are misleading statements. Hence when I am told someone is working on the problem of access I translate this to mean two things: first, I should go away and never come back; second, no one is really working on the problem. The only way to change this cultural response, that is force people not to blow you off with false promises is to fight--make a stink, threaten a law suit, garner bad publicity etc. Being patient does not work. Exceptions do exist but they are rare and noteworthy. The norm is resistance. Afterall, do you really believe it takes ABC more than two years to solve the problem of captioning?
Tuesday, June 22, 2010
Education and Disability: Barriers, Barriers, and More Barriers
Over the weekend I read a long article that was accompanied by a slide show in the New York Times education section. The article, "A Struggle to Educate the Severely Disabled" by Sharon Otterman left me somewhat angry and deeply annoyed. When I calmed down I was not angry or annoyed but depressed. Profoundly depressed. The focus of the story was characterized by a unrelenting negativity. Nothing positive was mentioned about the life and education of students with what are characterized as "multiple disabilities". This term is a veritable garbage can used to classify a small fraction of students. The article makes it clear these students are costly and not well served by our current educational system. The reasons for this failure are complex and hinted at only in passing. Instead, the article questions the value of educating students with multiple disabilities and despite its length comes across quite superficial. What does resonate are multiple negative comments or assessments that could easily lead some to conclude a great deal of money is being wasted on students with multiple disabilities. For instance, one student, Donovan Forde, is discussed throughout the article and used by the author to hook the reader in. According to Otterman,
"After 15 years in the New York City school system, he is less reserved and more social, but otherwise has shown almost no progress".
"On standardized assessments he has trouble with tasks most children master in infancy"
"Educating Donovan remains a search for ways to reach him":
"Donovan's communications are hard to measure on assessments".
"One morning in mid-March, there was an accomplishment".
Ms. Mack who worked with Donovan for two years stated "I don't think he appreciates getting an education".
Based on the many comments posted by the New York Times educating students like Donovan is a waste of time, energy and siphons funds from "normal students". Such remarks I consider bigoted at worst or poorly chosen at best dominate the comments section and are as striking as the overwhelming negative tone of the article. The subtext clearly questions if students with multiple disabilities are worth educating. This is based on the premise that a valuable education, one worth funding, is to produce independent autonomous people capable of making a contribution to society---that is becoming employed. If this is not possible then the value of the education received is open to debate. Given this philosophical underpinning, Otterman is free to characterize students with multiple disabilities in the worst possible light. I will refrain from citing the most objectionable or unnecessary statements that dehumanized students. Instead I will focus on the more subtle comments. For example:
"Aides lift another student, Darius Jenkins, 15, out of his wheelchair and place him on an inclined plane, where he lies quivering and drooling slightly for most of the class. He is given a squeeze ball to hold several times, but each time, he drops it". I am sure the description is accurate but its tone objectionable. What if I described a so called "normal child" in first grade as follows: "Mary is constantly distracted. She cannot recognize her letters or read a single word. She picks her nose instead of following the book being read in class". If I were a parent I would not be happy with either of the above assessments.
What is very clear is that to educate students with multiple disabilities is very expensive--"they are the most costly to educate and least understood". According to Otterman "in 2009 the cost per student was $58,877, more than triple the citywide average of $17,696". Nationwide there are apparently 132,000 students with multiple disabilities out of the 6.5 million receiving some sort of "special education"at a cost of $74 billion a year. Much money is being spent but is it being spent widely? Here is where I agree with Otterman that the educational system for students with multiple disabilities is flawed. The system we have in place is failing students like Donovan mentioned above. IDEA, Individual with Disabilities Education Act, is part of the problem--it is not well suited for students with multiple disabilities. These students it seems to me thrive when given experiential and sensorial stimulation. The academic component of their education, though important, needs to be considered in a broader context. It is hard for any person to learn if they are physically uncomfortable and tense. Hence physical, occupational, and speech therapy are critically important as is adaptive physical education and recreation. The goals of educating students with multiple disabilities also needs to be reconsidered. Independence may not be possible but that does not mean an education lacks value or importance. This is where the real problem lies--educating students like Donovan is not valued. What is the point many wonder? Why spend so much money on a student with such limited communication?
The answer to the above question is glossed over as is its importance. Since 1975 all children in America are guaranteed a free public education. That is all children, those with and without a disability, have the right to an education. Let me put this in perspective. If I became disabled three years earlier than I did the public school I attended would have had the legal right to bar me from receiving an education. Thus I consider myself lucky. I was among the first Americans with a disability to be educated and escape institutional life. Sadly, this is exactly what happened to hundreds of thousands of people with a disability and an untold number of lives were destroyed. People with disabilities were shipped off to institutions with the encouragement of doctors, social workers, educators, priests, rabbis, and other professionals. It was thought to be the right thing to do. While not all institutions were like the notorious Willowbrook, institutional life should be perceived as a measure of last resort. Many other viable alternatives should exist--here I refer to group homes, day programs, and other residential adaptations. Today parents are often forced to institutionalize their children--people like Donovan.
Perhaps the skeptic reading this post is thinking I am confusing two different populations: those students with a cognitive disability as opposed to a physical disability. I see no difference culturally. The opposition I have encountered in my efforts to receive an education were significant. The only reason ramps and elevators are supposed to be the norm today is because disability advocates fought for them with vigor. Laws were passed and educational institutions begrudgingly provided access. Problems still abound decades later. As a father instead of student I would characterize my son's public school as hostile to students with a disability and my crippled existence. I have precious few allies and most parents, given tight budgets, would happily choose to do away with special education so more money can be spent on their "normal" children. This is an old story that is played out in my son's school as well as in Donovan's school. The people that spend the vast majority of time with students with disabilities are not so called "special eduction teachers but teacher aides. Aides come and go, receive no training and are among the lowest paid people in the school system. No wonder students with multiple disabilities do not receive more therapy--those employees earn to much.
Otterman wrote just one thing that struck a positive chord with me-"students like Donovan do not fit neatly into the paradigm for special education that has prevailed in the United States for more than a decade: inclusion. Congress ranks each state for its success in moving special education children into general education classes, addressing a core concern in the field--that too many children are not getting access to the regular curriculum". This begs the question of what happens to students that will not benefit from the "regular curriculum"? As already stated, I believe their presence is not wanted, their education flawed, and worst of all not valued. Such students are capable of learning and have the right to learn. Much depends upon how we define and perceive education. I can offer no ready solutions to the issues and problems I have addressed. However, I would suggest how we educate those students with multiple disabilities speaks volumes about who we are as people. Historically and to date we have as Americans have done an abysmal job in this endeavor. I know this for a fact and I suspect people like Donovan are aware of this at some level too.
"After 15 years in the New York City school system, he is less reserved and more social, but otherwise has shown almost no progress".
"On standardized assessments he has trouble with tasks most children master in infancy"
"Educating Donovan remains a search for ways to reach him":
"Donovan's communications are hard to measure on assessments".
"One morning in mid-March, there was an accomplishment".
Ms. Mack who worked with Donovan for two years stated "I don't think he appreciates getting an education".
Based on the many comments posted by the New York Times educating students like Donovan is a waste of time, energy and siphons funds from "normal students". Such remarks I consider bigoted at worst or poorly chosen at best dominate the comments section and are as striking as the overwhelming negative tone of the article. The subtext clearly questions if students with multiple disabilities are worth educating. This is based on the premise that a valuable education, one worth funding, is to produce independent autonomous people capable of making a contribution to society---that is becoming employed. If this is not possible then the value of the education received is open to debate. Given this philosophical underpinning, Otterman is free to characterize students with multiple disabilities in the worst possible light. I will refrain from citing the most objectionable or unnecessary statements that dehumanized students. Instead I will focus on the more subtle comments. For example:
"Aides lift another student, Darius Jenkins, 15, out of his wheelchair and place him on an inclined plane, where he lies quivering and drooling slightly for most of the class. He is given a squeeze ball to hold several times, but each time, he drops it". I am sure the description is accurate but its tone objectionable. What if I described a so called "normal child" in first grade as follows: "Mary is constantly distracted. She cannot recognize her letters or read a single word. She picks her nose instead of following the book being read in class". If I were a parent I would not be happy with either of the above assessments.
What is very clear is that to educate students with multiple disabilities is very expensive--"they are the most costly to educate and least understood". According to Otterman "in 2009 the cost per student was $58,877, more than triple the citywide average of $17,696". Nationwide there are apparently 132,000 students with multiple disabilities out of the 6.5 million receiving some sort of "special education"at a cost of $74 billion a year. Much money is being spent but is it being spent widely? Here is where I agree with Otterman that the educational system for students with multiple disabilities is flawed. The system we have in place is failing students like Donovan mentioned above. IDEA, Individual with Disabilities Education Act, is part of the problem--it is not well suited for students with multiple disabilities. These students it seems to me thrive when given experiential and sensorial stimulation. The academic component of their education, though important, needs to be considered in a broader context. It is hard for any person to learn if they are physically uncomfortable and tense. Hence physical, occupational, and speech therapy are critically important as is adaptive physical education and recreation. The goals of educating students with multiple disabilities also needs to be reconsidered. Independence may not be possible but that does not mean an education lacks value or importance. This is where the real problem lies--educating students like Donovan is not valued. What is the point many wonder? Why spend so much money on a student with such limited communication?
The answer to the above question is glossed over as is its importance. Since 1975 all children in America are guaranteed a free public education. That is all children, those with and without a disability, have the right to an education. Let me put this in perspective. If I became disabled three years earlier than I did the public school I attended would have had the legal right to bar me from receiving an education. Thus I consider myself lucky. I was among the first Americans with a disability to be educated and escape institutional life. Sadly, this is exactly what happened to hundreds of thousands of people with a disability and an untold number of lives were destroyed. People with disabilities were shipped off to institutions with the encouragement of doctors, social workers, educators, priests, rabbis, and other professionals. It was thought to be the right thing to do. While not all institutions were like the notorious Willowbrook, institutional life should be perceived as a measure of last resort. Many other viable alternatives should exist--here I refer to group homes, day programs, and other residential adaptations. Today parents are often forced to institutionalize their children--people like Donovan.
Perhaps the skeptic reading this post is thinking I am confusing two different populations: those students with a cognitive disability as opposed to a physical disability. I see no difference culturally. The opposition I have encountered in my efforts to receive an education were significant. The only reason ramps and elevators are supposed to be the norm today is because disability advocates fought for them with vigor. Laws were passed and educational institutions begrudgingly provided access. Problems still abound decades later. As a father instead of student I would characterize my son's public school as hostile to students with a disability and my crippled existence. I have precious few allies and most parents, given tight budgets, would happily choose to do away with special education so more money can be spent on their "normal" children. This is an old story that is played out in my son's school as well as in Donovan's school. The people that spend the vast majority of time with students with disabilities are not so called "special eduction teachers but teacher aides. Aides come and go, receive no training and are among the lowest paid people in the school system. No wonder students with multiple disabilities do not receive more therapy--those employees earn to much.
Otterman wrote just one thing that struck a positive chord with me-"students like Donovan do not fit neatly into the paradigm for special education that has prevailed in the United States for more than a decade: inclusion. Congress ranks each state for its success in moving special education children into general education classes, addressing a core concern in the field--that too many children are not getting access to the regular curriculum". This begs the question of what happens to students that will not benefit from the "regular curriculum"? As already stated, I believe their presence is not wanted, their education flawed, and worst of all not valued. Such students are capable of learning and have the right to learn. Much depends upon how we define and perceive education. I can offer no ready solutions to the issues and problems I have addressed. However, I would suggest how we educate those students with multiple disabilities speaks volumes about who we are as people. Historically and to date we have as Americans have done an abysmal job in this endeavor. I know this for a fact and I suspect people like Donovan are aware of this at some level too.
Thursday, June 17, 2010
Disasters: Sorry But You Are Not Important
In the event of a a disaster people with a disability are screwed. This is a harsh fact of life. I think about this every time I fly on a plane. I know the odds of surviving a plane crash are remote at best. I know my odds are far longer than most people I fly with. I would need help getting off any plane that crashed and I have no doubt when faced with a life and death situation precious few people will stick around to help me. This includes the flight attendants whose job description theoretically includes helping me. I live with the knowledge that in event of a disaster no help with be forthcoming. I do not let this knowledge prevent me from getting on a plane or other means of mass transportation. What does bother me is that our government makes no pretense that is will help people with a disability in the event of a disaster. Disaster studies make for scary reading--truly troubling if you have a disability. We people with a disability are the very bottom of the priority list. We will be the last, and I mean the very last, people saved. Shoot, pets have a better chance at survival and rescue.
This week the Federal Emergency Management Agency (FEMA) acknowledged what I already know--it cannot be expected to save people with a disability in the event of a natural disaster. Why is this the case? Marcie Roth, FEMA's senior advisor on disability issues says there is a lack of funds to do so. FEMA does have a plan in place though to evacuate, shelter, and supply people with a disability in case of a natural disaster. And who is in charge of this plan and what is the budget? One person is in charge and the budget is $150,00. So FEMA has a plan in theory and no ability to implement it. I feel so much safer! Of course, FEMA is also the government organization that in 2005 during Hurricane Katrina took three days to get water to the Superdome. Hence, my expectations, low to begin with, are really non existent now. The House Committee on Home Land security suggested FEMA create a registry--FEMA rejected this idea because it would give people with a disability a false sense of security. I translate this to mean no help with ever be forthcoming. No wonder I think my life has less value than others that can walk. FEMA has acknowledged this as have most disaster planners. My point is the next time people cluck about how we Americans are equal I suggest readers with a disability bring up disasters plan. They are proof positive our own government does not value our existence and lives. This is a fact of life I live with and don't like. It is not that I worry about disasters but rather the larger meaning of such plans and how they filter down into every day life.
This week the Federal Emergency Management Agency (FEMA) acknowledged what I already know--it cannot be expected to save people with a disability in the event of a natural disaster. Why is this the case? Marcie Roth, FEMA's senior advisor on disability issues says there is a lack of funds to do so. FEMA does have a plan in place though to evacuate, shelter, and supply people with a disability in case of a natural disaster. And who is in charge of this plan and what is the budget? One person is in charge and the budget is $150,00. So FEMA has a plan in theory and no ability to implement it. I feel so much safer! Of course, FEMA is also the government organization that in 2005 during Hurricane Katrina took three days to get water to the Superdome. Hence, my expectations, low to begin with, are really non existent now. The House Committee on Home Land security suggested FEMA create a registry--FEMA rejected this idea because it would give people with a disability a false sense of security. I translate this to mean no help with ever be forthcoming. No wonder I think my life has less value than others that can walk. FEMA has acknowledged this as have most disaster planners. My point is the next time people cluck about how we Americans are equal I suggest readers with a disability bring up disasters plan. They are proof positive our own government does not value our existence and lives. This is a fact of life I live with and don't like. It is not that I worry about disasters but rather the larger meaning of such plans and how they filter down into every day life.
Wednesday, June 16, 2010
Home Depot: A Missed Opportunity
I hate super stores. They are truly miserable places to shop. Customer service is non existent despite what the ads on television portray. When I go to stores such as Staples, Home Depot, Target etc. I have no expectations except cheap prices. However, I pay dearly for those lower prices. For me, I pay via ignorance, stunning stupidity, and often shockingly rude comments and questions. It is not just the customers that are the problem--employees are equally unaware. Yesterday, I was in the Home Depot and had a typically negative encounter. When I shop at the Home Depot I go during the week at an odd time. More often than not the store is devoid of customers and employees. Yesterday was typical. Aisle after aisle was empty and the store looked like a ghost town. All was well with the world until I encountered an employee I could not void. As I was passing her in a loud voice she stated "Hey, no speeding in the store. The speed limit is enforced". I stared at the woman with a face of stone. No comment was necessary. Oblivious, she cackled at her own joke clearly amused at my expense. What I did next bothers me--I did nothing. I kept on going and simply let my anger stew. In retrospect I should have stopped this employee and told her exactly how rude she was. I should have gone to customer service and complained. Her "joke" was not funny or remotely appropriate. I permitted myself to be the butt of this employee's joke. I felt less than human, reduced to an inanimate object told not to speed. I was not amused and have heard this so called joke about speeding more times than I care to remember. The joke tellers think they are hysterical. They are not funny at all. They are rude and thoughtless. This is a problem. How do I explain this so called joke is not funny? How do I tell them that I am deeply insulted and angry? How do I get them to acknowledge that I a human being?
I do not have any ready answers to the questions above. I wish I did. When I let such social violations pass without comment I feel like I missed an opportunity to educate and correct. Ignorance afterall can be cured by a little education. But why I wonder is such an educational effort left to me and other people with a disability. It is not our job to educate the masses about disability. Surely disability awareness is part of the secondary school curriculum or employee training. If this true, why does ignorance abound? Frankly, I am getting too old and way too cranky to tolerate ignorant comments. I try not to be confrontational but there are times I cannot or should not let comments go. Yesterday's speeding "joke" was one of those times I needed to stop and be confrontational. Aside from the ignorance of the question, the laughter at my expense hurt. Sadly, such comments are far from unusual. I have been subjected to rude comments from strangers for the last thirty years. These comments have not abated--they are uttered with stunning regularity. I have adapted by creating some pretty sharp if not devastating replies that shut people up fast. This makes me feel better but I am not sure how helpful this is. I suspect my cutting replies are quickly dismissed; I am perceived to be the "angry" disabled person that hates his lot in life, an antiquated stereotype. My other means of adapting is less than helpful--I have learned to avoid certain social situations. I never ever go to health food stores--an offer for a cure to paralysis via herbal remedy is common. I never go to church--someone will tell me if I pray hard enough I will be able to walk again. In the end, what I resent the most is being public property, having my humanity violated on a regular basis. I just do not understand why others, all other humans, don't get this.
I do not have any ready answers to the questions above. I wish I did. When I let such social violations pass without comment I feel like I missed an opportunity to educate and correct. Ignorance afterall can be cured by a little education. But why I wonder is such an educational effort left to me and other people with a disability. It is not our job to educate the masses about disability. Surely disability awareness is part of the secondary school curriculum or employee training. If this true, why does ignorance abound? Frankly, I am getting too old and way too cranky to tolerate ignorant comments. I try not to be confrontational but there are times I cannot or should not let comments go. Yesterday's speeding "joke" was one of those times I needed to stop and be confrontational. Aside from the ignorance of the question, the laughter at my expense hurt. Sadly, such comments are far from unusual. I have been subjected to rude comments from strangers for the last thirty years. These comments have not abated--they are uttered with stunning regularity. I have adapted by creating some pretty sharp if not devastating replies that shut people up fast. This makes me feel better but I am not sure how helpful this is. I suspect my cutting replies are quickly dismissed; I am perceived to be the "angry" disabled person that hates his lot in life, an antiquated stereotype. My other means of adapting is less than helpful--I have learned to avoid certain social situations. I never ever go to health food stores--an offer for a cure to paralysis via herbal remedy is common. I never go to church--someone will tell me if I pray hard enough I will be able to walk again. In the end, what I resent the most is being public property, having my humanity violated on a regular basis. I just do not understand why others, all other humans, don't get this.
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