In Britain disability is news worthy and two stories are of particular interest. First, Tory leader David Cameron created a stir when he sent out Christmas cards. What made Cameron's archetypical Christmas card photograph of his family controversial was that it included his young song Ivan who has cerebral palsy. Some pundits suggested that Cameron used his son as a political prop designed to make him appear caring and sympathetic. The second story concerns Cerrie Burnell. Ms. Burnell is a presenter on the popular British children's TV show CBeebies. Ms. Burnell's mere presence has upset parents. Within days of her debut the BBC received complaints that Ms. Burnell was "scaring" children and one parent alleged his child had nightmares after seeing the show. What made Ms. Burnell's appearance so frightening? She has no right hand.
I had hoped that these two stories would spark a nuanced debate about disability in the British media. I reasoned that in 2008 the death of Daniel James and Barry Baker provided the foundation for a less hysterical and more substantive debate about disability. I was wrong. A glance at the website for CBeebies revealed a flood of comments, some of which were so nasty they had to be removed. I was stunned by the viscous nature of the comments made about Ms. Burnell. None of the many negative comments came from children but rather parents. To me this is proof that bigotry is learned behavior. The public debate about Ms. Burnell reveals what people with a disability already know: discrimination is an every day phenomenon. Thus when asked by the BBC if she were surprised by the complaints that were levied about her presence Ms. Burnell replied "This is to be expected". Sadly, Ms. Burnell is correct. Worse yet, her sober dignified reply to questions about her missing right hand have been ignored. Instead, there is hysteria, fear, and panic under the guise of "protecting children".
The criticism levied against Ms. Burnell is baseless. It is akin to the raw sort of discrimination that black people, women, and other minority groups encounter. In Ms. Burnell's estimation, discrimination against people with a disability remains common because there are so few disabled characters on television. This point is undoubtedly correct but the inherent prejudice people with a disability encounter runs deeper and is more insidious. In order for people with a disability to make substantive progress in terms of equal rights they need to assert themselves and embrace an identity that tied to their disability. In short , be "disabled and proud". Those unfamiliar with disability don't get this. It is a foreign concept too far removed from "common sense". No one wants to be disabled, right? Correct, no one wants to acquire or be born with a disability. But this does not mean one should hide a disability or be ashamed of it. Yet, this is exactly what we teach children when their disabled peers are sent to school on the "special bus", spend most of the day in "resource rooms" and have to go to the nursing office to use the bathroom because it has the only accessible toilet. The message being sent is clear and accepted without question: disability is very bad and society will, out of the goodness of our heart, provide a "special" place for you. In another era this was called segregation and the Supreme Court ruled it was inherently unequal.
People with a disability that demand equality know a different reality from their bipedal peers. Any disability is part of who we are as human beings. Ms. Burnell maintains that "I'm just like everyone else in that I wear what I feel comfortable in. I don't deliberately try to make people confront my disability, but I do not try to hide it. This is me, and I am neither ashamed nor embarrassed by it". Francesca Martinez, a comedian, considers this to be the "huge secret" about disability--"a disability is like hair colour, eye colour, height, or weight, just another arbitrary feature". Few people without a disability grasp this concept. In Ms. Burnell's case the fact she does not have a right hand is used to dehumanize her--this a a social not a physical failure on her part. What comes first is her disability and her humanity second. Thus people with a disability are public property, subject to intense scrutiny and rude or intrusive questions are the norm. These questions are designed to assert a socially superior position the questioner enjoys. Disability is not "normal" and such difference is supposed to be hidden. Every day more people with a disability are rejecting this idea. I for one see nothing wrong with my paralyzed and twisted body or Ms. Burnell'a lack of a right hand. Disability is simply part of life and society needs to become less discriminating and people with a disability need to assert their civil rights.
Tuesday, March 3, 2009
Wednesday, February 25, 2009
Higher Education and Disability Based Discrimination
I have a PhD from Columbia University. My parents are very proud of my degree from an Ivy League school. To this day my favorite photograph of my parents sits on my desk. The photograph has them, my son who was an infant, and me in full academic regalia all smiling. I love this photograph because they look so happy and proud. When I look at this photograph I am reminded of a special time in my life. But alongside fond memories are thoughts and experiences that are not so warm and fuzzy. I was among the first disabled students accepted to Columbia University. I was accepted because I was qualified and had the full support of Robert Murphy, a famous anthropologist who happened to be paralyzed. When I arrived on campus I was scared and considered myself woefully unprepared for the rigors of graduate school. This was an accurate assessment. Murphy could not have been more supportive of me and he was brilliant and blunt man. My first semester at Columbia he told me he would get whatever accommodation I needed. He also warned me that I could not fail. If I failed there was no doubt in his mind that this would be used to justify the future exclusion of disabled students at Columbia for many years. This thought terrified and inspired me because I knew it was true. I worked as hard as humanly possible and when access problems arose as they did daily Murphy had the power to solve them. Without Murphy, there is no chance I would have succeeded and he trusted me to carry a heavy burden. I felt overwhelming pressure to excel. In fact, I did not want to just excel I wanted to exceed all expectations and be an academic star.
My experience at Columbia came back to me today when I read an article, "U. Reports Lower Number of Disabled Students than Peer Institutions" published by the Daily Princetonian. According to staff writer Joanne Chong disabled students make up less than 2% of the Princeton University body. To me, this is a depressing statistic when one considers it is even lower than the average 3 to 4% of disabled students at other Ivy League universities. Why is this a depressing statistic? It is proof that the educational and cultural barriers that existed when I was an undergraduate and graduate student remain common place. Worse yet, at Princeton the Office of Disability Services is less than three years old. This does not surprise me in the least in spite of the fact the ADA was passed almost 20 years ago. My experience has been that prestigious universities such as Columbia, Harvard, Princeton, Yale, etc all are needlessly exclusionary. Barriers in terms of wheelchair access and accommodations for people with a host of disabilities are the norm. A culture of perfection exists at schools like Princeton and Columbia and it is assumed students with disabilities have no place on campus. High academic standards, excellence, rigorous work, outstanding performance are not the first things that come to mind when one thinks of disability. What do most people think when they see a man such as myself that uses a wheelchair and is paralyzed? Limits. People without any knowledge of disability think of all the things I cannot do rather than the myriad of ways I have adapted to paralysis. Given this instant negative evaluation, lowered expectations exist and the belief that accommodations are tantamount to charity are all too common. This is a deadly combination that creates overwhelming obstacles for many people with disabilities. Such obstacles exist in most institutions and are more obvious at places like Princeton.
In the article I read one quote struck me as particularly astute. A disabled student noted that everyone at Princeton was nice but there was an "unmovable wall of tradition that is very difficult to change". I encountered this metaphorical wall at Columbia in the early 1990s, Ed Roberts, founder of the independent living movement, encountered this wall at the University of California in the 1970s, and students with disabilities encounter this at secondary and post secondary educational institutions today. Progress is taking place but at a glacial pace. This is infuriating to me and thousands of other people with disabilities that simply want access to an equal education.
What has changed is the law. Laws exist that are designed to empower students with disabilities but attitudinal and architectural barriers remain. Students with disabilities know this and are often afraid or too timid to assert their rights. Thus students with invisible cognitive disabilities to give but one example do not seek extra time for a test because such an accommodation may be perceived as unfair advantage. No one explicitly states this and the discrimination is more subtle and insidious. It takes the form of a professor who bemoans the fact campuses are "over run by students with learning disabilities". This statement was made by a colleague of mine who embraces diversity for everyone but people with disabilities.
It is not easy to ask or demand accommodations be made. This is a time consuming thankless task that is perceived by those unfamiliar with disability as a narcisstic endeavor. If I have learned one thing about academic life it is that universities hate change. Making any exception, i.e. accommodations, to well established traditions are not taken lightly. Given this I was not surprised to read that "At the heart of our philosophy is the belief that the course structure is an essential element of a Princeton education. As part of a comprehensive approach to a liberal arts education, we expect the full engagement of our students as members of an intellectual community, and our degree program assumes a common experience of full-time residential study". This rigid structure works for most students but certainly not all. If such rigidity is strictly enforced the number of students with disabilities at Princeton and other universities will remain statistically insignificant. In fact, I would not be writing these words if a basic and reasonable accommodation was not made for me when I was an undergraduate. You see in 1978 I was a newly minted paraplegic just out of the hospital. Like my peers, I headed off to college but I was far from physically capable of carrying a full schedule of classes. The university I attended, Hofstra, permitted me to live in the dorms even though I took three classes, one class short of the minimum allowed. This basic accommodation made in my freshman year gave me the time needed to strengthen my body and mind after years of serious debilitating illness. Today, Princeton would categorically refuse to make such an accommodation.
It is in the best interest of universities to accommodate and embrace students with disabilities. Diversity is important and incorporating disabled students and faculty members on campus can only enhance academic communities. What is lacking on far too many campuses nationwide is the utter lack of progressive attitudes when it comes to disability. Faculty members who vigorously seek to incorporate students of color, women, gays, and other minority groups that are under represented have conspicuously ignored if not actively discriminated against students with disabilities. Is it really that hard to make sure buildings are accessible, hire interpreters for deaf students, provide students with a learning disability extra time to take an exam, and have a disability services officer on campus that can facilitate all this? Not in my estimation. What institutions of higher education lack is the insight and will to make this happen. I for one think academic tradition and tight budgets, a one two knock out punch regularly used to exclude people with disabilities, are poor excuses. Surely if one is smart enough to teach and work at an institution of higher education a solution to the inclusion of people with disabilities can be found and implemented.
My experience at Columbia came back to me today when I read an article, "U. Reports Lower Number of Disabled Students than Peer Institutions" published by the Daily Princetonian. According to staff writer Joanne Chong disabled students make up less than 2% of the Princeton University body. To me, this is a depressing statistic when one considers it is even lower than the average 3 to 4% of disabled students at other Ivy League universities. Why is this a depressing statistic? It is proof that the educational and cultural barriers that existed when I was an undergraduate and graduate student remain common place. Worse yet, at Princeton the Office of Disability Services is less than three years old. This does not surprise me in the least in spite of the fact the ADA was passed almost 20 years ago. My experience has been that prestigious universities such as Columbia, Harvard, Princeton, Yale, etc all are needlessly exclusionary. Barriers in terms of wheelchair access and accommodations for people with a host of disabilities are the norm. A culture of perfection exists at schools like Princeton and Columbia and it is assumed students with disabilities have no place on campus. High academic standards, excellence, rigorous work, outstanding performance are not the first things that come to mind when one thinks of disability. What do most people think when they see a man such as myself that uses a wheelchair and is paralyzed? Limits. People without any knowledge of disability think of all the things I cannot do rather than the myriad of ways I have adapted to paralysis. Given this instant negative evaluation, lowered expectations exist and the belief that accommodations are tantamount to charity are all too common. This is a deadly combination that creates overwhelming obstacles for many people with disabilities. Such obstacles exist in most institutions and are more obvious at places like Princeton.
In the article I read one quote struck me as particularly astute. A disabled student noted that everyone at Princeton was nice but there was an "unmovable wall of tradition that is very difficult to change". I encountered this metaphorical wall at Columbia in the early 1990s, Ed Roberts, founder of the independent living movement, encountered this wall at the University of California in the 1970s, and students with disabilities encounter this at secondary and post secondary educational institutions today. Progress is taking place but at a glacial pace. This is infuriating to me and thousands of other people with disabilities that simply want access to an equal education.
What has changed is the law. Laws exist that are designed to empower students with disabilities but attitudinal and architectural barriers remain. Students with disabilities know this and are often afraid or too timid to assert their rights. Thus students with invisible cognitive disabilities to give but one example do not seek extra time for a test because such an accommodation may be perceived as unfair advantage. No one explicitly states this and the discrimination is more subtle and insidious. It takes the form of a professor who bemoans the fact campuses are "over run by students with learning disabilities". This statement was made by a colleague of mine who embraces diversity for everyone but people with disabilities.
It is not easy to ask or demand accommodations be made. This is a time consuming thankless task that is perceived by those unfamiliar with disability as a narcisstic endeavor. If I have learned one thing about academic life it is that universities hate change. Making any exception, i.e. accommodations, to well established traditions are not taken lightly. Given this I was not surprised to read that "At the heart of our philosophy is the belief that the course structure is an essential element of a Princeton education. As part of a comprehensive approach to a liberal arts education, we expect the full engagement of our students as members of an intellectual community, and our degree program assumes a common experience of full-time residential study". This rigid structure works for most students but certainly not all. If such rigidity is strictly enforced the number of students with disabilities at Princeton and other universities will remain statistically insignificant. In fact, I would not be writing these words if a basic and reasonable accommodation was not made for me when I was an undergraduate. You see in 1978 I was a newly minted paraplegic just out of the hospital. Like my peers, I headed off to college but I was far from physically capable of carrying a full schedule of classes. The university I attended, Hofstra, permitted me to live in the dorms even though I took three classes, one class short of the minimum allowed. This basic accommodation made in my freshman year gave me the time needed to strengthen my body and mind after years of serious debilitating illness. Today, Princeton would categorically refuse to make such an accommodation.
It is in the best interest of universities to accommodate and embrace students with disabilities. Diversity is important and incorporating disabled students and faculty members on campus can only enhance academic communities. What is lacking on far too many campuses nationwide is the utter lack of progressive attitudes when it comes to disability. Faculty members who vigorously seek to incorporate students of color, women, gays, and other minority groups that are under represented have conspicuously ignored if not actively discriminated against students with disabilities. Is it really that hard to make sure buildings are accessible, hire interpreters for deaf students, provide students with a learning disability extra time to take an exam, and have a disability services officer on campus that can facilitate all this? Not in my estimation. What institutions of higher education lack is the insight and will to make this happen. I for one think academic tradition and tight budgets, a one two knock out punch regularly used to exclude people with disabilities, are poor excuses. Surely if one is smart enough to teach and work at an institution of higher education a solution to the inclusion of people with disabilities can be found and implemented.
Monday, February 23, 2009
David Paterson and the Blind NY POST
A few hours ago I read Planet of the Blind blog entry "Governor Paterson's Blindness and the Public's Incomprehension Leads to an Avalanche of Stereotypes". In Steve Kuusisto's wonderfully acerbic entry he deconstructs the flawed logic of Ben Smith, a writer at Politico, and a New York Post editorial that assert Governor Paterson has failed to perform adequately because he is blind. Smith and the NY Post acknowledge the Spitzer fiasco and the financial crisis are major variables but they maintain Paterson's "troubles" are largely of his own making. Politically, they have a point but like Kuusisto I strenuously object to their assertion that Paterson's failure is tied to the fact he is blind. The NY Post is entertaining to read but often unbalance, biased and in this case dead wrong. On February 19 the NY Post maintained: "Paterson's blindness severely constricts his ability to acquire basic information. His administration is adrift; he is inconsistent, imprecise and often contradictory in his public statements. To put it bluntly, the governor needs competent help". I don't disagree with the political content of the NY Post editorial. Paterson has truly struggled since he took office and some of his decisions make me scratch my head. But connecting Paterson's blindness with his struggles in office is wrong and based on antiquated stereotypes. Kuusisto deconstructs this logic better than I can and as he points out it is based on painfully simple logic: "Blind People can't see. One must see to read. Therefore blind people can't read".
I have just one point to add to Kuusisto's comments about Paterson and that has to do with Ben Smith's opening remarks in "Paterson's Blindness" made on February 19. Smith wrote: "New York Gov. Paterson's story was, when he unexpectedly took office upon Eliot Spitzer's fall, told in familiar terms as triumph over adversity. He had risen to the highest level of government despite being almost entirely blind since birth, and despite not ever having learned to read Braille. This is how America talks about disabilities, and there was no reason to initially not to portray Paterson as having risen to the challenge". Sadly, this is indeed how Americans think of disability in the broadest sense of the term. Governor Paterson overcame "adversity" but what sort of adversity did he encounter? Paterson has been clear on this point: the "adversity" he had to overcome was an educational system that did not want to teach him because he was blind. Schools did not want to spend money on the technology that would make it possible for him to read. He was not worth the effort or expense. This is a form of bigotry few who can walk, see, and hear are willing to acknowledge. In refusing to recognize the civil rights of people with a host of disabilities society clings to stereotypes and the result is that Paterson becomes a straw figure in the eyes of many. He "overcame" a disability and thus is a prime example of superman iconography. He is no mere mortal but a super human person who in spite of his blindness puts all others to shame. The other way Paterson is portrayed is the SNL version: a bumbling fool, disoriented, unable to read, and grossly incompetent.
The total lack of nuance associated with media portrayals of disability ignores a basic fact: people with disabilities are no different than anyone else with the exception of the way they have adapted to a type of physical deficit. We as a species, that is the animal that we humans are, possess an inherent prejudice against all those that are different. Difference is feared and stigmatized. This is learned behavior and people with disabilities are considered a class a part. In Paterson's case he is not just an ordinary politician who has struggled once he took office in a prominent position. No, Paterson is the "blind governor" and what comes first and foremost is that word blind. Blindness is feared just as much as paralysis and many other disabilities. This infuriates me and I for one wonder why can't the media delve into what "legally blind" means? What are the options open to people with profound visual deficits? How many people use guide dogs and what other mobility options exist for blind people? Sadly, these sorts of questions do not generate catchy titles and are heavy on substance. Instead we read editorials such as the one about Paterson in the NY Post that assumes Paterson failed because he is blind. This is an opinion based on a stereotype and lacks any foundation. The implications are great for one could easily assume not only is Paterson incompetent but so are all other blind people and by extension anyone with a disability. To me, this accounts for why so many people with a disability are unemployed and encounter needless obstacles on a daily basis. We as a society can do much better if we would only be willing to use our best asset: our powerful and ever adaptable minds.
I have just one point to add to Kuusisto's comments about Paterson and that has to do with Ben Smith's opening remarks in "Paterson's Blindness" made on February 19. Smith wrote: "New York Gov. Paterson's story was, when he unexpectedly took office upon Eliot Spitzer's fall, told in familiar terms as triumph over adversity. He had risen to the highest level of government despite being almost entirely blind since birth, and despite not ever having learned to read Braille. This is how America talks about disabilities, and there was no reason to initially not to portray Paterson as having risen to the challenge". Sadly, this is indeed how Americans think of disability in the broadest sense of the term. Governor Paterson overcame "adversity" but what sort of adversity did he encounter? Paterson has been clear on this point: the "adversity" he had to overcome was an educational system that did not want to teach him because he was blind. Schools did not want to spend money on the technology that would make it possible for him to read. He was not worth the effort or expense. This is a form of bigotry few who can walk, see, and hear are willing to acknowledge. In refusing to recognize the civil rights of people with a host of disabilities society clings to stereotypes and the result is that Paterson becomes a straw figure in the eyes of many. He "overcame" a disability and thus is a prime example of superman iconography. He is no mere mortal but a super human person who in spite of his blindness puts all others to shame. The other way Paterson is portrayed is the SNL version: a bumbling fool, disoriented, unable to read, and grossly incompetent.
The total lack of nuance associated with media portrayals of disability ignores a basic fact: people with disabilities are no different than anyone else with the exception of the way they have adapted to a type of physical deficit. We as a species, that is the animal that we humans are, possess an inherent prejudice against all those that are different. Difference is feared and stigmatized. This is learned behavior and people with disabilities are considered a class a part. In Paterson's case he is not just an ordinary politician who has struggled once he took office in a prominent position. No, Paterson is the "blind governor" and what comes first and foremost is that word blind. Blindness is feared just as much as paralysis and many other disabilities. This infuriates me and I for one wonder why can't the media delve into what "legally blind" means? What are the options open to people with profound visual deficits? How many people use guide dogs and what other mobility options exist for blind people? Sadly, these sorts of questions do not generate catchy titles and are heavy on substance. Instead we read editorials such as the one about Paterson in the NY Post that assumes Paterson failed because he is blind. This is an opinion based on a stereotype and lacks any foundation. The implications are great for one could easily assume not only is Paterson incompetent but so are all other blind people and by extension anyone with a disability. To me, this accounts for why so many people with a disability are unemployed and encounter needless obstacles on a daily basis. We as a society can do much better if we would only be willing to use our best asset: our powerful and ever adaptable minds.
Wednesday, February 18, 2009
SNL: Bad Taste or Bigotry?
I am not blind. I do not know a great deal about visual disabilities. I have read multiple memoirs written by people with visual deficits and find the discrimination they encounter strikingly similar to what I experience as a person that is paralyzed and uses a wheelchair. When the average person encounters a person with a disability like blindness or paralysis preconceived notions abound. Blind people cannot navigate the world. They have hyper sensitive hearing and mystical abilities. Paralyzed people cannot have sex or bear children. Paralyzed people are bitter or have a chip on their shoulder. These stereotypes exist for a reason and are difficult to subvert. I know this as does Governor Paterson who has been skewered by SNL. While I enjoy the life of an average and anonymous person Paterson is public figure who has asserted that SNL skits are not the least bit funny. I agree and detest the puns and world play used by the mainstream media when the subject comes up. For instance, an Opinion piece in the Los Angeles Times concluded that the humor Paterson objected to amounted to bad taste not bigotry and that "those that equate the two may have eyes but they do not see".
Let me be clear on the SNL skits: go ahead make fun of Paterson. His rise to power was unexpected, he used drugs, butchered the handling of Caroline Kennedy for Senate, his marriage was a mess, and some of his decisions in office are questionable. This is archetypical SNL political fodder. Paterson knows this and has not objected to this aspect of the SNL spoofs. What Paterson has vehemently objected to is the bigoted humor that mocks the fact he is blind. Holding charts upside down, wandering aimlessly, using binoculars as a prop is not funny. This simply reinforces decades old and antiquated notions about blindness that one would think would be long forgotten. It also makes me realize how great the social divide is between disabled people and people without a disability. The skits on SNL that spoofed Paterson are akin to the basest forms of humor that would be offensive if one replaced blindness with race, religion, gender, or national origin. Paterson has reiterated this point and it has been ignored.
Paterson has not impressed me since he became governor with one exception: his response to the SNL skit has been consistent and on point. He has maintained that the biggest problem with the SNL skit is that it reinforces existing problems all disabled people encounter: attitudinal barriers that account for the high rate of unemployment among people with disabilities. The SNL skits have no basis in fact. Governor Paterson is not an inept blind man. I for one have never observed a blind person doing any of the the things portrayed in the SNL skits. Given this, I cannot help but conclude Mr. Paterson is correct when he stated that SNL mocked his disability and that this "humor" was particularly damaging because it assumes any person that is blind, deaf, or paralyzed is incompetent. I was subjected to this sort of ridicule in college and I did not find it funny when I was 18 and I don't think it is funny when I am 48.
Those that are unfamiliar with disability may consider Paterson and myself to be kill joys. This is not true. Much humor can be found in disability but it requires a depth of knowledge that SNL ignored in favor of third grade chuckles. And I assure you that such humor is indeed damaging to all people with a disability. I know this is true because I am routinely subjected to baseless prejudice that is dependent upon antiquated beliefs. For instance, once in a while when I go out to eat the waiter or waitress will ask if I can read. The assumption is that paralysis and cognitive deficits are in n the same. I am also asked on a regular basis if I am the "biological father" of my son. The assumption made is that no paralyzed person could be a father. This sort of baseless bigotry is exactly what Paterson is objecting to. This is why I find no humor in SNL skits that mock Paterson's blindness and wish instead of clever word play editors of major newspapers would read some of the many wonderful memoirs published by blind people. Steve Kuusisto's Planet of the Blind would be a wonderful place to start. Perhaps I should ask Steve to send the SNL producers a copy of his book. Of course this would mean they would need to read it and use their considerable skills to create humor that is based on fact not bigotry.
Let me be clear on the SNL skits: go ahead make fun of Paterson. His rise to power was unexpected, he used drugs, butchered the handling of Caroline Kennedy for Senate, his marriage was a mess, and some of his decisions in office are questionable. This is archetypical SNL political fodder. Paterson knows this and has not objected to this aspect of the SNL spoofs. What Paterson has vehemently objected to is the bigoted humor that mocks the fact he is blind. Holding charts upside down, wandering aimlessly, using binoculars as a prop is not funny. This simply reinforces decades old and antiquated notions about blindness that one would think would be long forgotten. It also makes me realize how great the social divide is between disabled people and people without a disability. The skits on SNL that spoofed Paterson are akin to the basest forms of humor that would be offensive if one replaced blindness with race, religion, gender, or national origin. Paterson has reiterated this point and it has been ignored.
Paterson has not impressed me since he became governor with one exception: his response to the SNL skit has been consistent and on point. He has maintained that the biggest problem with the SNL skit is that it reinforces existing problems all disabled people encounter: attitudinal barriers that account for the high rate of unemployment among people with disabilities. The SNL skits have no basis in fact. Governor Paterson is not an inept blind man. I for one have never observed a blind person doing any of the the things portrayed in the SNL skits. Given this, I cannot help but conclude Mr. Paterson is correct when he stated that SNL mocked his disability and that this "humor" was particularly damaging because it assumes any person that is blind, deaf, or paralyzed is incompetent. I was subjected to this sort of ridicule in college and I did not find it funny when I was 18 and I don't think it is funny when I am 48.
Those that are unfamiliar with disability may consider Paterson and myself to be kill joys. This is not true. Much humor can be found in disability but it requires a depth of knowledge that SNL ignored in favor of third grade chuckles. And I assure you that such humor is indeed damaging to all people with a disability. I know this is true because I am routinely subjected to baseless prejudice that is dependent upon antiquated beliefs. For instance, once in a while when I go out to eat the waiter or waitress will ask if I can read. The assumption is that paralysis and cognitive deficits are in n the same. I am also asked on a regular basis if I am the "biological father" of my son. The assumption made is that no paralyzed person could be a father. This sort of baseless bigotry is exactly what Paterson is objecting to. This is why I find no humor in SNL skits that mock Paterson's blindness and wish instead of clever word play editors of major newspapers would read some of the many wonderful memoirs published by blind people. Steve Kuusisto's Planet of the Blind would be a wonderful place to start. Perhaps I should ask Steve to send the SNL producers a copy of his book. Of course this would mean they would need to read it and use their considerable skills to create humor that is based on fact not bigotry.
Wednesday, February 11, 2009
Travel and Gross Inequities
At no point in my life is the discrimination against people with a disability more evident than when I use mass transportation. Buses, trains, and planes all present significant barriers. Legislation designed to enforce the rights of people with disabilities date back to the late 1970s and early 1980s yet access barriers remain the norm. In terms of mass transportation I believe the airline industry is by far the most discriminatory. The aviation industry has a long history of blatant violations against passengers with disabilities. Year after year major American airlines such as Northwest, Delta and United are fined for violating the civil rights of passengers with a disability. No commercial airline has been spared from vehement complaints levied by people with disabilities. Based on my experience people with disabilities, especially those such as myself that use a wheelchair, have good reason to complain. In fact when I travel by plane regardless of the carrier I feel as though I am going to war.
When I leave my home for the airport I assume I will encounter needless architectural barriers and blatant discrimination by airline employees. This is the norm and it starts in parking lots where handicapped parking is often full, curb cuts totally absent, blocked or located in the wrong place. When I get to the terminal elevators are often locked or located in obscure locations. Finding an airline employee or security guard that knows how to unlock or find a key to turn on an elevator is always an adventure. These problems arise at old and new airports. Thus by the time I get through security and to the gate I am already pissed off. There I will be greeted by a stressed out overburdened gate agent that considers me more work. I need a gate claim for my wheelchair and seat assignment as far forward as humanly possible. The FAA stipulates that on certain planes people with a disability such as mine are supposed to have access to the bulk head seat provided it is not an emergency row. This FAA regulation means little to the gate agent because many airlines charge extra for bulkhead seats or assign them to their best customers. Again, my request for a bulk head seat is simply more work, a hassle for the gate agent who will need to deal with another angry customer who was bumped from an existing seat assignment.
People that use a wheelchair and travel often know the above saga and litany of complaints are never easy to deal with. They are also the tip of an iceberg in terms of what can go wrong when one travels and uses a wheelchair. Those unfamiliar with disability related problems when traveling are always quick to point out that air travel for any person is not easy. This assessment is correct. Planes are normally full and passengers are squeezed in like sardines and herded like cattle. But passengers that have a disability cannot be herded like cattle and must follow a different path. This "special" path is never convenient and too often discriminatory. A case in point is the security line. Those that use a wheelchair cannot go through the metal detector for obvious reasons. The norm for people such as myself who uses a wheelchair is to be physically patted down by a TSA guard of the same sex. The thoroughness of this pat down ranges from cursory to a very serious search of one's body.
The scrutiny people that use a wheelchair are subjected to is about to get much more intense. The reason for this is that the TSA posted a story on its blog about a recent case in Los Angeles. Apparently a man that was using a wheelchair was caught trying to smuggle cocaine in two packages taped to his body. The TSA has always maintained that wheelchairs and other adaptive devices make smuggling easier. This case worries me because I think the TSA will use it as an excuse to ramp up its screening of all people with a disability. Elderly travelers have bitterly complained about excessive screening as have those that use a prosthesis or have an artificial joint. The TSA sees the case in question as a great victory, proof that anyone is a possible terrorist threat. The TSA blog points out that in Columbia circa 2005 a man that used a wheelchair was allowed to bypass metal detectors and was not patted down. This man and his son tried to hijack a plane with two hand grenades.
So, beware of the TSA. Be forewarned all old ladies and men, wheelchair users, and anyone else that cannot navigate their way through an airport metal detector. You may be a terrorist and as such you will be searched. You will be subject to a close physical inspection and patted down whether you like it or not. Please don't misconstrue my words: I am not opposed to security or the TSA. Indeed, I think most TSA guards are courteous and professional but understandably firm. They have a job to do and I think the TSA needs to be aware that by the time a person with a physical disability gets to the security line they have already encountered needless barriers. The TSA need not add to the pressure associated with traveling by singling out people that use adaptive devices. The airline industry has already made travel difficult enough, the TSA does not need tp add yet another barrier.
When I leave my home for the airport I assume I will encounter needless architectural barriers and blatant discrimination by airline employees. This is the norm and it starts in parking lots where handicapped parking is often full, curb cuts totally absent, blocked or located in the wrong place. When I get to the terminal elevators are often locked or located in obscure locations. Finding an airline employee or security guard that knows how to unlock or find a key to turn on an elevator is always an adventure. These problems arise at old and new airports. Thus by the time I get through security and to the gate I am already pissed off. There I will be greeted by a stressed out overburdened gate agent that considers me more work. I need a gate claim for my wheelchair and seat assignment as far forward as humanly possible. The FAA stipulates that on certain planes people with a disability such as mine are supposed to have access to the bulk head seat provided it is not an emergency row. This FAA regulation means little to the gate agent because many airlines charge extra for bulkhead seats or assign them to their best customers. Again, my request for a bulk head seat is simply more work, a hassle for the gate agent who will need to deal with another angry customer who was bumped from an existing seat assignment.
People that use a wheelchair and travel often know the above saga and litany of complaints are never easy to deal with. They are also the tip of an iceberg in terms of what can go wrong when one travels and uses a wheelchair. Those unfamiliar with disability related problems when traveling are always quick to point out that air travel for any person is not easy. This assessment is correct. Planes are normally full and passengers are squeezed in like sardines and herded like cattle. But passengers that have a disability cannot be herded like cattle and must follow a different path. This "special" path is never convenient and too often discriminatory. A case in point is the security line. Those that use a wheelchair cannot go through the metal detector for obvious reasons. The norm for people such as myself who uses a wheelchair is to be physically patted down by a TSA guard of the same sex. The thoroughness of this pat down ranges from cursory to a very serious search of one's body.
The scrutiny people that use a wheelchair are subjected to is about to get much more intense. The reason for this is that the TSA posted a story on its blog about a recent case in Los Angeles. Apparently a man that was using a wheelchair was caught trying to smuggle cocaine in two packages taped to his body. The TSA has always maintained that wheelchairs and other adaptive devices make smuggling easier. This case worries me because I think the TSA will use it as an excuse to ramp up its screening of all people with a disability. Elderly travelers have bitterly complained about excessive screening as have those that use a prosthesis or have an artificial joint. The TSA sees the case in question as a great victory, proof that anyone is a possible terrorist threat. The TSA blog points out that in Columbia circa 2005 a man that used a wheelchair was allowed to bypass metal detectors and was not patted down. This man and his son tried to hijack a plane with two hand grenades.
So, beware of the TSA. Be forewarned all old ladies and men, wheelchair users, and anyone else that cannot navigate their way through an airport metal detector. You may be a terrorist and as such you will be searched. You will be subject to a close physical inspection and patted down whether you like it or not. Please don't misconstrue my words: I am not opposed to security or the TSA. Indeed, I think most TSA guards are courteous and professional but understandably firm. They have a job to do and I think the TSA needs to be aware that by the time a person with a physical disability gets to the security line they have already encountered needless barriers. The TSA need not add to the pressure associated with traveling by singling out people that use adaptive devices. The airline industry has already made travel difficult enough, the TSA does not need tp add yet another barrier.
Saturday, February 7, 2009
Ableism: SNL, Paterson and Bad Humor
The first time SNL lampooned David Paterson I was not amused. Well, actually I was more than a little mad. Go ahead and make fun of Paterson and every other elected official. I love this sort comedy and always have. SNL is the master of this sort of political humor and has experienced a resurgence of sorts thanks in larger part to Tina Fay's hysterical impersonation of Sarah Palin. If I can find the humor in Fay as Palin why am I mad at when Fred Armisen lampoons Paterson? SNL skewered Palin for what she said and her political views. SNL can go right ahead and do the same to Paterson and they sure do have plenty of material for comedic fodder. But SNL does not want to stop at making fun of Paterson's political gaffs. No, they have relied on cheap, antiquated, and bigoted humor that makes fun of the fact Paterson is blind. These gags are offensive and many have stated that SNL crossed the line. I agree. Groups such as the National Federation for the Blind and the National Coalition for Disability Rights have been particularly critical.
Last night when I was out watching my son perform in a play SNL came up during the intermission and I was asked what I thought of the Paterson skits. My response was emphatic: the skits were not funny. They were an insult to all people with disabilities. My friends thought I was humorless, a prototypical academic unable to connect with the world in which they interact. Worse yet, I could not take a joke. In reply I asked would they laugh at jokes from the 1930s that portrayed black people as less than human? What about anti-Semetic jokes about concentration camps. Would they find this humorous? I think not. My comments ended the discussion quickly. No one knew how to reply.
So, here we are almost 20 years after the ADA was passed and the average American does not have a clue as to the bigotry and ignorance people with disabilities encounter. This lack of knowledge surrounds us and is especially evident in newspapers. Even in articles that are intended to be supportive of Paterson and critical of SNL miss the mark. For instance, in the New York Times yesterday there was an article by Clyde Haberman entitled "A Governor's Sense of Humor put to the Test". Haberman considers the SNL skit "creepy". He quotes disability activists who make good points and clearly finds much fault in the SNL skits. While this is great, some of Haberman's opening comments are as antiquated as the SNL skit. For instance, Haberman writes that "across the years he [Paterson] triumphed over affliction" and that his "ascension in Albany last year was a fluke" that "gave the sightless new reason to take heart". These sort of comments are as bad if not worse than the SNL skit. Paterson has repeatedly stated that the color of his skin created fewer social barriers than did the fact he was blind. Paterson consistently mentions the fact that the unemployment rate for people who are blind is 70% Moreover, Paterson's rise to power was no fluke. He is a competent, a gifted speaker, and been active in politics for decades. He intends to run for governor and in spite of a few rough patches (like the Senate seat/Caroline Kennedy debacle) has handled himself with great dignity.
In the weeks and months to come I hope to witness a more nuanced view of the politics of disability. This has already started via commercials that attack Paterson that were paid for by state health workers' union and the association of hospitals. The commercial features a blind man sitting in a wheelchair wearing sun glasses that asks "Why are you doing this to me?" Paterson sees nothing wrong with these ads nor has he ever complained about the content of SNL skits that poked fun of his views as governor or his well chronicled personal indiscretions. All this goes with being governor of New York. Paterson knows this as does every other governor in the country. Thus I am not worried about Paterson as he can fend for himself. But I do worry about the impact bigoted humor has on the general public and that is where SNL crossed the line. I get this as does Paterson and disability rights activists. I wish everyone understood and until they do bigoted humor will still appear to be, well, funny, when it is anything but.
Last night when I was out watching my son perform in a play SNL came up during the intermission and I was asked what I thought of the Paterson skits. My response was emphatic: the skits were not funny. They were an insult to all people with disabilities. My friends thought I was humorless, a prototypical academic unable to connect with the world in which they interact. Worse yet, I could not take a joke. In reply I asked would they laugh at jokes from the 1930s that portrayed black people as less than human? What about anti-Semetic jokes about concentration camps. Would they find this humorous? I think not. My comments ended the discussion quickly. No one knew how to reply.
So, here we are almost 20 years after the ADA was passed and the average American does not have a clue as to the bigotry and ignorance people with disabilities encounter. This lack of knowledge surrounds us and is especially evident in newspapers. Even in articles that are intended to be supportive of Paterson and critical of SNL miss the mark. For instance, in the New York Times yesterday there was an article by Clyde Haberman entitled "A Governor's Sense of Humor put to the Test". Haberman considers the SNL skit "creepy". He quotes disability activists who make good points and clearly finds much fault in the SNL skits. While this is great, some of Haberman's opening comments are as antiquated as the SNL skit. For instance, Haberman writes that "across the years he [Paterson] triumphed over affliction" and that his "ascension in Albany last year was a fluke" that "gave the sightless new reason to take heart". These sort of comments are as bad if not worse than the SNL skit. Paterson has repeatedly stated that the color of his skin created fewer social barriers than did the fact he was blind. Paterson consistently mentions the fact that the unemployment rate for people who are blind is 70% Moreover, Paterson's rise to power was no fluke. He is a competent, a gifted speaker, and been active in politics for decades. He intends to run for governor and in spite of a few rough patches (like the Senate seat/Caroline Kennedy debacle) has handled himself with great dignity.
In the weeks and months to come I hope to witness a more nuanced view of the politics of disability. This has already started via commercials that attack Paterson that were paid for by state health workers' union and the association of hospitals. The commercial features a blind man sitting in a wheelchair wearing sun glasses that asks "Why are you doing this to me?" Paterson sees nothing wrong with these ads nor has he ever complained about the content of SNL skits that poked fun of his views as governor or his well chronicled personal indiscretions. All this goes with being governor of New York. Paterson knows this as does every other governor in the country. Thus I am not worried about Paterson as he can fend for himself. But I do worry about the impact bigoted humor has on the general public and that is where SNL crossed the line. I get this as does Paterson and disability rights activists. I wish everyone understood and until they do bigoted humor will still appear to be, well, funny, when it is anything but.
Thursday, February 5, 2009
Framing the Debate: Assisted Suicide and Disability
It is frigid in New York. When I woke up it was 4 f. and I measure this sort of cold by the creeks and cranks that materialize in my wheelchair when the temperature dips near zero. Since it is too cold to spend much time outdoors I have been doing a lot of reading. Last night I finished Edwin Black's searing War Against the Weak, one of the best books I have ever read about the Eugenics movement in the United States. This morning I read too much about California's Terminal Patients' Right to Know End-of-Life Options Act that was signed into law recently. My reading choices have made me cranky. The assisted death movement has gained tremendous momentum in the last year and I am deeply worried about the implications of recent legal changes in Washington, Montana and California. When I expressed these reservations to a friend they thought I was being reactionary. "Come on", this person said, "you live in the burbs and have nothing to worry about. Hospitals and doctors would never treat you poorly." This assessment is wrong and indicates why the assisted suicide movement has been so successful.
At first glance assisted suicide makes sense. Surely people should have the personal autonomy to decide when their life is not worth living. Terminally ill people should not needlessly suffer when death is inevitable. This seemingly logical position is fraught with error. Terminally ill people rarely take advantage of assisted suicide and substantial confusion exists with regard to exactly who is and is not terminally ill. Life is far more complex and in this regard I often think of the work of Susan Sontag who wrote about her experience with breast cancer. In Illness as a Metaphor she wrote:
Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick...I want to describe, not what it is really like to emigrate to the kingdom of the ill and live there, but the punitive or sentimental fantasies concocted about that situation... My point is that illness is not a metaphor, and that the most truthful way of regarding illness--and the healthiest way of being ill--is one most purified of, most resistant to, metaphoric thinking. Yet is is hardly possible to take up one's residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped.
Like it or not, doctors, nurses, health aides, administrators, EMTs and the myriad of people associated with what we call the health care system are human. Mistakes are made every day in every hospital in the country and I doubt that will ever change. People that work in hospitals often hold firmly entrenched views and too many rely on preconceived notions that may or may not be accurate. Again, this will not change because we are all too human and prone to error. I know a lot about preconceived ideas because I never cease to be amazed by the overwhelmingly negative perception of disability. In my daily life this is a major inconvenience and source of aggravation. In a hospital setting such negative assumptions about disability are simply dangerous. In part, this is why I can identify with not just other groups of people who have been disenfranchised but those who have extended hospital admissions.
It seems reasonable for health care professionals to inform people who are terminally ill about end of life options available to them. We Americans love full disclosure about as much as we love to sue the pants off one another. What is conveniently ignored is just how debilitating it is to be hospitalized for an extended period of time. When you then factor in age, disability, and recognition that one's life is nearing an end depression is a logical and perfectly sane response. So let me ask what happens when you are disabled, depressed, ill and then encounter a well-meaning person that thinks life with a profound disability is not worth living. Afterall no one wants to be paralyzed and use a wheelchair. Paralyzed people cannot have children, marry, hold a job, and lead a rich and rewarding life. Why even if a disabled person survives they are likely to end up in a nursing home. Who wants that sort life? This leads me to ask is a disabled person really going to be fully informed? Will such full disclosure push such a person over the edge and crave death instead of life? Will a psychological consult and treatment for depression be stressed or will death be seen as a preferable course of action? This is not the sort of personal autonomy I think most have in mind when they think of assisted suicide.
What terminally ill people need is care and compassion. What disabled people need is equality. I do not see how the new California law AB2747 helps anyone except those that want to see assisted suicide become increasingly common. The answer to the needs of the terminally ill and the equal rights of disabled people are not being met by any law that makes death appear to be a valid medical option. This is just too easy, seductive in it simplicity and deadly. What is needed is a system designed to ameliorate the disorientation and social isolation associated with long term hospitalization. I am merely more vulnerable and aware of this having had been hospitalized for prolonged periods of time. So for those that think assisted suicide is reasonable, I suggest a little reading and more thought is required. I am confident the vast majority of people willing to do this will agree life is indeed sweet and worth living. Whether one is disabled or terminally ill is not relevant to this debate, this just makes us more vulnerable to misguided law makers and medical practitioners.
At first glance assisted suicide makes sense. Surely people should have the personal autonomy to decide when their life is not worth living. Terminally ill people should not needlessly suffer when death is inevitable. This seemingly logical position is fraught with error. Terminally ill people rarely take advantage of assisted suicide and substantial confusion exists with regard to exactly who is and is not terminally ill. Life is far more complex and in this regard I often think of the work of Susan Sontag who wrote about her experience with breast cancer. In Illness as a Metaphor she wrote:
Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick...I want to describe, not what it is really like to emigrate to the kingdom of the ill and live there, but the punitive or sentimental fantasies concocted about that situation... My point is that illness is not a metaphor, and that the most truthful way of regarding illness--and the healthiest way of being ill--is one most purified of, most resistant to, metaphoric thinking. Yet is is hardly possible to take up one's residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped.
Like it or not, doctors, nurses, health aides, administrators, EMTs and the myriad of people associated with what we call the health care system are human. Mistakes are made every day in every hospital in the country and I doubt that will ever change. People that work in hospitals often hold firmly entrenched views and too many rely on preconceived notions that may or may not be accurate. Again, this will not change because we are all too human and prone to error. I know a lot about preconceived ideas because I never cease to be amazed by the overwhelmingly negative perception of disability. In my daily life this is a major inconvenience and source of aggravation. In a hospital setting such negative assumptions about disability are simply dangerous. In part, this is why I can identify with not just other groups of people who have been disenfranchised but those who have extended hospital admissions.
It seems reasonable for health care professionals to inform people who are terminally ill about end of life options available to them. We Americans love full disclosure about as much as we love to sue the pants off one another. What is conveniently ignored is just how debilitating it is to be hospitalized for an extended period of time. When you then factor in age, disability, and recognition that one's life is nearing an end depression is a logical and perfectly sane response. So let me ask what happens when you are disabled, depressed, ill and then encounter a well-meaning person that thinks life with a profound disability is not worth living. Afterall no one wants to be paralyzed and use a wheelchair. Paralyzed people cannot have children, marry, hold a job, and lead a rich and rewarding life. Why even if a disabled person survives they are likely to end up in a nursing home. Who wants that sort life? This leads me to ask is a disabled person really going to be fully informed? Will such full disclosure push such a person over the edge and crave death instead of life? Will a psychological consult and treatment for depression be stressed or will death be seen as a preferable course of action? This is not the sort of personal autonomy I think most have in mind when they think of assisted suicide.
What terminally ill people need is care and compassion. What disabled people need is equality. I do not see how the new California law AB2747 helps anyone except those that want to see assisted suicide become increasingly common. The answer to the needs of the terminally ill and the equal rights of disabled people are not being met by any law that makes death appear to be a valid medical option. This is just too easy, seductive in it simplicity and deadly. What is needed is a system designed to ameliorate the disorientation and social isolation associated with long term hospitalization. I am merely more vulnerable and aware of this having had been hospitalized for prolonged periods of time. So for those that think assisted suicide is reasonable, I suggest a little reading and more thought is required. I am confident the vast majority of people willing to do this will agree life is indeed sweet and worth living. Whether one is disabled or terminally ill is not relevant to this debate, this just makes us more vulnerable to misguided law makers and medical practitioners.
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