Last week my son sent me an article from the Huffington Post about Chen Guangcheng. He was following the news about Chen Guangcheng, the Chinese activist, who he described as a being a "bad ass of epic proportions". Why was Chen Guangcheng a "bad ass of epic proportion"? In my son's estimation he was a real life Rutger Hauer as in the Grade B 1980s movie Blind Fury. I am not a fan of this movie. We watched it together a long time ago. After the film I explained to my son why I had serious reservations about the content. I explained it was based on a faulty premise and followed a well worn super cripple belief used throughout film history. My son listened politely and said "Dad, its just a cool movie, you know the suspension of willing disbelief and all that stuff".
I was reminded of this exchange because in the last week dozens of stories about Chen Guangcheng have appeared in nearly every news media outlet. As I hoped, Stephen Kuusisto has chimed in at Planet of the Blind and is quoted in a very good article by Alan Greenblatt. Greenblatt notes that central to all stories about Guangcheng is the fact he is blind. He wonders if Chen Guangcheng is in the news because of his activism or because he is blind. This is a damn good question. Kuusisto is quoted as stating "His blindness did not give him any particular bravery or insight. It is just a factor in a much larger life". I completely agree with this statement. Predictably tabloids have had a field day as they are prone to when it comes to any sort of disability. I perceive no change in the way Chen Guangchang is described--there is always a reference to the fact he is blind. Kuusisto is quoted as noting "Blindness stands as a kind of metaphorical intensifier. The cleric [Omar Abdel Rashman the so called blind sheik] is angrier than other people because he is blind. In that way Chen is more miraculous and heroic because he is blind". This is in part exactly why my son was so enamored with the movie Blind Fury. Rutger Hauer was not an ordinary bad ass. He was an epic bad ass because he was blind. Chen Guangcheng is no ordinary activist, he is as Kuusisto observes a miraculous and heroic activist.
When people I know, and the many I do not know, note my assessment of how far people with a disability have come in terms of disability rights is inherently negative stories such as Chen Guangchang come to mind. Have we made any progress since the 1980s--progress here in a cultural not legal sense? Legally yes culturally no. Many laws exist that are designed to protect my civil rights. On bad days I think there these laws are useless because there is no social mandate to enforce them. I am distressed by people in positions of power who hold an antiquated view of disability. Here Mayor Bloomberg comes to mind and his all out effort to have the so called Taxi of Tomorrow approved in spite of the fact it is not accessible. Bloomberg is simply one of many that think providing basic and what are known as "reasonable accommodations" is a matter of choice not law. And this is the real problem, American culture--something Robert Murphy noted when he wrote the Body Silent. In short, progress is taking place but at a glacial pace.
Saturday, May 5, 2012
Monday, April 30, 2012
Comfort Care: Killing a Bad Cripple
Last friday an article I have alluded to was made available on line. Here I refer to "Comfort Care as a Denial of Personhood". My essay can be read on line at: http://onlinelibrary.wiley.com/doi/10.1002/hast.38/full. Please note Wiley, the publisher of the Hastings Center Report where my essay will appear in print later this summer has a very impressive pay wall. To access my essay you must subscribe. I cannot even access what I wrote! However, I can post some quotes. The essay pertains to the severe wound I had in 2010 and in particular one experience I had late at night. Let me be clear: I was very sick, critically ill. This is what transpired, an event that has haunted me. I was asked:
"if I understood the gravity of my condition. Yes, I said, I am well aware of the implications. He grimly told me I would be bedbound for at least six months and most likely a year or more. That there was a good chance the wound would never heal. If this happened, I would never sit in my wheelchair. I would never be able to work again. Not close to done, he told me I was looking at a life of complete and utter dependence. My medical expenses would be staggering. Bankruptcy was not just possible but likely. Insurance would stop covering wound care well before I was healed. Most people with the type of wound I had ended up in a nursing home.
This litany of disaster is all too familiar to me and others with a disability. The scenario laid out happens with shocking regularity to paralyzed people. The hospitalist went on to tell me I was on powerful antibiotics that could cause significant organ damage. My kidneys or liver could fail at any time. He wanted me to know that MRSA was a life-threatening infection particularly because my wound was open, deep, and grossly infected. Many paralyzed people die from such a wound.
His next words were unforgettable. The choice to receive antibiotics was my decision and mine alone. He informed me I had the right to forego any medication, including the lifesaving antibiotics. If I chose not to continue with the current therapy, I could be made very comfortable. I would feel no pain or discomfort at all. Although not explicitly stated, the message was loud and clear. I can help you die peacefully. Clearly death was preferable to nursing home care, unemployment, bankruptcy, and a lifetime in bed. I am not sure exactly what I said or how I said it, but I was emphatic—I wanted to continue treatment, including the antibiotics. I wanted to live."
I never told anyone about what transpired. Not my family, friends, the nurses I saw for over a year when I was bedbound. I did not tell anyone for a very good reason: I was scared. Terrified really. A physician, a person who is highly educated, and I would hope free of any bias considered my life not worth living. Disability was a fate worse than death. It was the ultimate insult. People with a disability do not write about fear, we feel it I am sure, but few delve into how deadly cultural assumptions can be. Harriet McBryde Johnson and Kenny Fries are two exceptions--others exist I am sure. Doctors usually chalk this up to misunderstandings on the part of the patient and sweep such incidents under the carpet. But as many people with a disability know critical care hospitals are a hostile environment. I wrote:
"Hospitals and diagnostic equipment are often grossly inaccessible. Staff members can be rude, condescending, and unwilling to listen or adapt to any person who falls outside the norm. We people with a disability represent extra work for them. We are a burden. We also need expensive, high-tech equipment that the hospital probably does not own. In my case, a Clinitron bed, which provides air fluidized therapy, had to be rented while I was hospitalized. Complicating matters further is the widespread use of hospitalists—generally an internist who works exclusively in the hospital and directs inpatient care. The hospitalist model of care is undoubtedly efficient and saves hospitals billions of dollars a year. However, there is a jarring disconnect between inpatient and outpatient care, which can represent a serious risk to people with a disability. My experience certainly demonstrates this, as no physician who knew me would have suggested withholding lifesaving treatment."
When I showed my essay to a friend he was deeply annoyed. He thought what I wrote was counter productive. I was exaggerating the situation. He told me no one is out to get you and you are going to scare people. I replied people with a disability have every right to be scared. While no one wakes up in the morning and thinks I will discriminate against people with a disability, that does not mean discrimination is non existent. I am sure when I saw the film Million Dollar Baby and the audience cheered when the main character, Maggie, was killed I doubt anyone clapping thought they were bigots. But I was shaken to the core--the assumption clearly was one is better off dead than disabled. What exactly does that mean about the quality of my life? The belief one is better off dead than disabled has real life consequences I wrote about:
"people with a disability who publicly express a desire to die rather than live become media darlings. They get complete and total support in their quest. Ironically, who is discriminated against? Those people with a disability who choose to live. We face a great challenge in that society refuses to provide the necessary social supports that would empower us to live rich, full, and productive lives. This makes no sense to me. It is also downright dangerous in a medical system that is privatized and supposedly “patient-centered”—buzzwords I often heard in the hospital. It made me wonder, how do physicians perceive “patient-centered” care? Is it possible that patient-centered health care would allow, justify, and encourage paralyzed people to die? Is patient- centered care a euphemism that makes people in the health care system feel better? When hospitalized, not once did I feel well cared for".
I went on to note:
"What I experienced in the hospital was a microcosm of a much larger social problem. Simply put, my disabled body is not normal. We are well equipped to deal with normal bodies. Efficient protocols exist within institutions, and the presence of a disabled body creates havoc. Before I utter one word or am examined by a physician, it is obvious that my presence is a problem. Sitting in my wheelchair, I am a living symbol of all that can go wrong with a body and of the limits of medical science to correct it."
When I was stuck in bed at the end of 2010 and for much of 2011 I often thought of my mentor at Columbia University, Robert Murphy whose book The Body Silent changed my life. I had found myself socially isolated and miserable. I did not handle the situation well--my family can vouch for this assessment. Looking back, I realize now I was deeply depressed. I am far from a social butterfly but being stuck in one's living room for a year will test the inner fortitude of any human being. But the point I am trying to stress is that one phrase from Murphy's book resonated in my head. Those that know me would likely guess liminality but they would be wrong. I realized one important thing when I was in bed. We people with a disability are no longer liminal beings--the ADA has seen to that and this is evidence of hard fought social change. We people with a disability can have a place in society--we are no longer on the outside looking in. We can force others to make "reasonable accommodations". This is a battle but the law is on our side. However we are far from equal and I would maintain are "ambiguous people", our existence acknowledged but not necessarily valued or wanted. Thus I am convinced the next step in the evolution of disability rights will entail a social battle for recognition. The law is on our side but society is not. We have an ambiguous identity but that by itself is a sign of major progress. I absolutely look forward to what is to come. And today I am thinking life is sweet.
Sunday, April 29, 2012
Anti Intellectualism: A Rampant Problem
"Greed is good". This well-known line is from the fictional character Gordon Gekko in the 1987 film Wall Street. I was reminded of this line after reading about what Mitt Romney told a group of engineering students at Otterbein University. As many will have heard Romney suggested young people take risk. He said "Take a risk, get the education, borrow money if you have to from your parents, start a business". And how much did Romney suggest students borrow? $20,000. This amount was not pulled out of thin air--it was how much the owner of a sandwich chain, Jimmy John's, borrowed from his father to start the business. As expected people have blasted Romney for being out of touch--and for good reason. The vast majority of parents are either broke or in debt by the time they are finished paying tuition costs. What the vast majority of people have missed is an even more objectionable comment Romney made at a round table discussion with students. Thus the statement about borrowing $20,000 is a red herring.
Speaking to a group of engineering students he told them they were in high demand. High demand meaning they will likely get jobs upon graduation. Romney then speculated about the value of other areas of study and prospects for employment. He stated: "you really don’t want to take out $150,000 loan to go into English because you’re not going to be able to pay it back. You might want to think about something else that meets your interest”. Romney believed he could make this claim because he was an English major. I could blast Romney as many Democrats have done on borrowing $20,000 from one's parents. Instead, I will comment on why his statement r.e. English majors is significant. Romney clearly believes an degree in English is not worth $150,000 of debt. You can't pay it back. So who can major in English? Only those that can afford it. This is bad enough but Romney's statement I take to be most damning is his suggestion those that cannot afford to major in English study something else. And what would that something else be? Business, engineering, computer science and other majors with perceived "value". Perceived value here meaning a reasonable chance to get a job and start a career. By implication majors such as history, anthropology, sociology, english, art history and others have no value. They are not worth $150,000 of debt.
Romney's take on the value of an education is not unusual. To me, it is an indication of a corporate mentality that has firmly gripped higher education, parents and students alike. Higher education is no longer valued. It is a means to an end. Universities hire people like me--highly educated day laborers with no job security or benefits. Good luck finding a professor with tenure. They are a rarity. More classes are now offered at night than during the day as the vast majority of students are working at least 20 hours a week to pay for tuition. Many of my students miss class because they are forced to work late. Every class I teach has at least one student sitting in the back who struggles not to fall asleep. Students are simply too busy working to put in the needed time and effort to do well in class. I cannot get angry at students--they are likely accumulating major debt to pay for tuition. They are understandably worried.
What I worry about are the broader cultural implications. That is what does it say about American society when a person like Romney thinks a degree in English is not worth $150,000 of debt. This statement is grossly misleading. I want to know why a college degree is so expensive. I worry about the fact tuition for a four year college education has increased an astounding 827% since 1980. I want to know why student loan debt has increased by 511% since 1999. I want to know why no one is discussing student loan debt that exceeds $1 trillion dollars. When I read these statistics I can think of only one thing--capitalist society is creating a permanent class of people deeply in debt. Worse yet, students in my classes are apathetic. They know exactly what they are doing. They realize the long range implications. The constant refrain I hear from them is always the same: "there is nothing we can do. That's just the way it is". This sort of deep depression about the future reminds of the origin of Punk music in the 1970s in the UK. In college when depressed I would play the Sex Pistols song God Save the Queen over and over. It was the unofficial Punk rock anthem. The lyrics seem particularly relevant today:
God save the queen
The fascist regime
They made you a moron
Potential H-bomb
God save the queen
She ain't no human being
There is no future
In England's dreaming
Don't be told what you want
Don't be told what you need
There's no future, no future,
No future for you
God save the queen
We mean it ma'am
We love our queen
God saves
God save the queen
'Cause tourists are money
And our figurehead
Is not what she seems
Oh God save history
God save your mad parade
Oh Lord God have mercy
All crimes are paid
When there's no future
How can there be sin
We're the flowers in the dustbin
We're the poison in your human machine
We're the future, your future
God save the queen
We mean it ma'am
We love our queen
God saves
God save the queen
We mean it ma'am
And there is no future
In England's dreaming
No future, no future,
No future for you
No future, no future,
No future for me
No future, no future,
No future for you
No future, no future
For you
Is there no future? I do not want to believe this but will readily admit I am worried. I am worried about my students and worried about my son. What will their future hold? These worries are connected to the implications of a Republican victory in the upcoming presidential race. If Romney wins I fear he will be given a mandate to wage a war on the poor in this country of historic proportions. Republicans, galvanized by a presidential victory, will not just slash the social safety net for the poor but eliminate it entirely. I have no doubt those close to me, people with a disability, will be among the first to be targeted. These are troubling times and we need an educated public that refuses to be misled. Perhaps that English degree is worth it.
Speaking to a group of engineering students he told them they were in high demand. High demand meaning they will likely get jobs upon graduation. Romney then speculated about the value of other areas of study and prospects for employment. He stated: "you really don’t want to take out $150,000 loan to go into English because you’re not going to be able to pay it back. You might want to think about something else that meets your interest”. Romney believed he could make this claim because he was an English major. I could blast Romney as many Democrats have done on borrowing $20,000 from one's parents. Instead, I will comment on why his statement r.e. English majors is significant. Romney clearly believes an degree in English is not worth $150,000 of debt. You can't pay it back. So who can major in English? Only those that can afford it. This is bad enough but Romney's statement I take to be most damning is his suggestion those that cannot afford to major in English study something else. And what would that something else be? Business, engineering, computer science and other majors with perceived "value". Perceived value here meaning a reasonable chance to get a job and start a career. By implication majors such as history, anthropology, sociology, english, art history and others have no value. They are not worth $150,000 of debt.
Romney's take on the value of an education is not unusual. To me, it is an indication of a corporate mentality that has firmly gripped higher education, parents and students alike. Higher education is no longer valued. It is a means to an end. Universities hire people like me--highly educated day laborers with no job security or benefits. Good luck finding a professor with tenure. They are a rarity. More classes are now offered at night than during the day as the vast majority of students are working at least 20 hours a week to pay for tuition. Many of my students miss class because they are forced to work late. Every class I teach has at least one student sitting in the back who struggles not to fall asleep. Students are simply too busy working to put in the needed time and effort to do well in class. I cannot get angry at students--they are likely accumulating major debt to pay for tuition. They are understandably worried.
What I worry about are the broader cultural implications. That is what does it say about American society when a person like Romney thinks a degree in English is not worth $150,000 of debt. This statement is grossly misleading. I want to know why a college degree is so expensive. I worry about the fact tuition for a four year college education has increased an astounding 827% since 1980. I want to know why student loan debt has increased by 511% since 1999. I want to know why no one is discussing student loan debt that exceeds $1 trillion dollars. When I read these statistics I can think of only one thing--capitalist society is creating a permanent class of people deeply in debt. Worse yet, students in my classes are apathetic. They know exactly what they are doing. They realize the long range implications. The constant refrain I hear from them is always the same: "there is nothing we can do. That's just the way it is". This sort of deep depression about the future reminds of the origin of Punk music in the 1970s in the UK. In college when depressed I would play the Sex Pistols song God Save the Queen over and over. It was the unofficial Punk rock anthem. The lyrics seem particularly relevant today:
God save the queen
The fascist regime
They made you a moron
Potential H-bomb
God save the queen
She ain't no human being
There is no future
In England's dreaming
Don't be told what you want
Don't be told what you need
There's no future, no future,
No future for you
God save the queen
We mean it ma'am
We love our queen
God saves
God save the queen
'Cause tourists are money
And our figurehead
Is not what she seems
Oh God save history
God save your mad parade
Oh Lord God have mercy
All crimes are paid
When there's no future
How can there be sin
We're the flowers in the dustbin
We're the poison in your human machine
We're the future, your future
God save the queen
We mean it ma'am
We love our queen
God saves
God save the queen
We mean it ma'am
And there is no future
In England's dreaming
No future, no future,
No future for you
No future, no future,
No future for me
No future, no future,
No future for you
No future, no future
For you
Is there no future? I do not want to believe this but will readily admit I am worried. I am worried about my students and worried about my son. What will their future hold? These worries are connected to the implications of a Republican victory in the upcoming presidential race. If Romney wins I fear he will be given a mandate to wage a war on the poor in this country of historic proportions. Republicans, galvanized by a presidential victory, will not just slash the social safety net for the poor but eliminate it entirely. I have no doubt those close to me, people with a disability, will be among the first to be targeted. These are troubling times and we need an educated public that refuses to be misled. Perhaps that English degree is worth it.
Saturday, April 28, 2012
Bigotry Abounds
http://youtu.be/7WuqLJtoXyY
In the last week I have been deeply disturbed by baseless bigotry. Two stories have troubled me. First, as an avid hockey fan I was shocked when I read comments after the Boston Bruins lost game 7 and hence the series against the Washington Capitals. The man that scored the deciding goal, in over tome no less, Joel Ward, is a clutch performer. This is what I think when I see his name on the sports page. A clutch player who has a knack for scoring important goals. That is not what all fans saw. Some bigots only noticed the color of Wards skin. Seconds after he scored a torrent of racist tweets appeared, all of them vile. Worse yet, Ward was not surprised by the bigoted remarks. When I read this I thought back to a pre season exhibition game in London Ontario where a banana was thrown at Wayne Simmonds, one of the few other black men playing in the NHL. Ward and Simmons both said such bigotry is to be expected when playing a sport that is dominated by white athletes. This observation is truly sad, proof bigotry is alive and well.
The second terrible story concerns Jennifer Tyrrell in the moving talk she gave at GLAAD (Gay and Lesbian Alliance Against Defamation). Tyrrell's experience with the Boy Scouts of America did not surprise me one iota. Please watch this embedded video from beginning to end. I was deeply moved and reminded of my struggles with the Boy Scouts of America. My son, like Tyrrell's was captivated in first grade by Cub Scout activities. Much to my chagrin, after attending one Pack Night he was hooked. By extension I was hooked too as I was quickly recruited to be a Den Leader. For those that know nothing about the BSA, the organization is divided into two different groups--younger boys participate in the Cub Scouts. Cub Scouts are parent driven--parents do the organizing and choose activities for boys to participate in. When boys reach middle school they can become Boy Scouts though half usually drop out. Boy Scouts are a youth directed group, that is older boys are supposed to design, lead and choose activities with limited parental support. The point here is to emphasize the Cub Scouts and Boy Scouts are both BSA owned and operated entities but in reality are remarkably different. I have much first hand experience with the BSA. Aside from being a Den Leader and committee member of the Cub Scouts I also "advanced" with my son into the Boy Scouts. With the Boy Scouts I was an active assistant scout master. I was also the Venture Crew Leader, another group operated byt he BSA.
I learned much as a leader within the BSA. The power and weakness of the BSA is rooted in its refusal to change. We anthropologists characterize the images associated with the BSA to be symbolic demography. That is nationwide Americans have a preconceived notion of what the BSA entails. Think Norman Rockwell images. Boys camping. Boys helping a little old lady across the street. Boys taught to be honest to a fault--hence the phrase "you are such a Boy Scout". Boys who help the poor. Boys that are clean cut and do not do drugs. Boys that have a moral compass and do not bully others. This is powerful and basic. Time and time again I saw boys truly taught by parents and older boys to do the right thing. This refusal to change has a dark under belly. In celebrating the past circa 1955 Normal Rockwell imagery, in embracing the symbols associated with the roots of scouting, the BSA has failed to acknowledge much less embrace fundamental changes in American society. It is as thought the civil rights movement never existed. Women rights and the feminist movement never took place. Black people were never integrated. Cripples never escaped institutions. Churches abound and gay people are firmly and solidly in the closet. It is a very white world. People know their place. It is in short a fantasy.
The BSA is in my estimation a social tragedy. The perpetrators of this tragedy are not to be found at the grass roots level who in my experience largely do their best. Exception exist of course. The heart of the problem is the BSA is rotten at the core. The professional scouters, the national organization itself is hopelessly backward and dominated by the Mormon Church. Scouting is the official youth activity of Church of Latter day Saints. From this core come directives to ban gay men, women and boys. Atheists are targeted as well. Women fair little better. The "three Gs" are banned. It is a significant problem because in the last two decades the BSA is developing a new image--hate mongers that exclude. Hence my memories as a BSA scout leader are decidedly mixed. Some of my fondest memories of my son's childhood are associated with scouting events. But these memories are sullied by the needless bigotry we encountered. Important events held in inaccessible locations and the rigid refusal to move them in the name of tradition. I remember countless outings to scouting events on scout property without a single accessible bathroom. Again and again I was told we never had a paralyzed scout or scout leader. We never had the need to build a ramp or accessible toilet was a constant refrain. Sorry, you can just drop off your son and leave was always the solution. Inclusion? What a joke. Thus I was a bit teary eyed when I saw Tyrrell talk. I was jealous too. Few people were willing to support my efforts when involved with the scouts. I was surely never flown anywhere and given a standing ovation. This makes me wish we people with a disability were as powerful as gay rights groups that I respect and admire. And on this cold spring day I dream of a day when access is assumed and socially supported.
In the last week I have been deeply disturbed by baseless bigotry. Two stories have troubled me. First, as an avid hockey fan I was shocked when I read comments after the Boston Bruins lost game 7 and hence the series against the Washington Capitals. The man that scored the deciding goal, in over tome no less, Joel Ward, is a clutch performer. This is what I think when I see his name on the sports page. A clutch player who has a knack for scoring important goals. That is not what all fans saw. Some bigots only noticed the color of Wards skin. Seconds after he scored a torrent of racist tweets appeared, all of them vile. Worse yet, Ward was not surprised by the bigoted remarks. When I read this I thought back to a pre season exhibition game in London Ontario where a banana was thrown at Wayne Simmonds, one of the few other black men playing in the NHL. Ward and Simmons both said such bigotry is to be expected when playing a sport that is dominated by white athletes. This observation is truly sad, proof bigotry is alive and well.
The second terrible story concerns Jennifer Tyrrell in the moving talk she gave at GLAAD (Gay and Lesbian Alliance Against Defamation). Tyrrell's experience with the Boy Scouts of America did not surprise me one iota. Please watch this embedded video from beginning to end. I was deeply moved and reminded of my struggles with the Boy Scouts of America. My son, like Tyrrell's was captivated in first grade by Cub Scout activities. Much to my chagrin, after attending one Pack Night he was hooked. By extension I was hooked too as I was quickly recruited to be a Den Leader. For those that know nothing about the BSA, the organization is divided into two different groups--younger boys participate in the Cub Scouts. Cub Scouts are parent driven--parents do the organizing and choose activities for boys to participate in. When boys reach middle school they can become Boy Scouts though half usually drop out. Boy Scouts are a youth directed group, that is older boys are supposed to design, lead and choose activities with limited parental support. The point here is to emphasize the Cub Scouts and Boy Scouts are both BSA owned and operated entities but in reality are remarkably different. I have much first hand experience with the BSA. Aside from being a Den Leader and committee member of the Cub Scouts I also "advanced" with my son into the Boy Scouts. With the Boy Scouts I was an active assistant scout master. I was also the Venture Crew Leader, another group operated byt he BSA.
I learned much as a leader within the BSA. The power and weakness of the BSA is rooted in its refusal to change. We anthropologists characterize the images associated with the BSA to be symbolic demography. That is nationwide Americans have a preconceived notion of what the BSA entails. Think Norman Rockwell images. Boys camping. Boys helping a little old lady across the street. Boys taught to be honest to a fault--hence the phrase "you are such a Boy Scout". Boys who help the poor. Boys that are clean cut and do not do drugs. Boys that have a moral compass and do not bully others. This is powerful and basic. Time and time again I saw boys truly taught by parents and older boys to do the right thing. This refusal to change has a dark under belly. In celebrating the past circa 1955 Normal Rockwell imagery, in embracing the symbols associated with the roots of scouting, the BSA has failed to acknowledge much less embrace fundamental changes in American society. It is as thought the civil rights movement never existed. Women rights and the feminist movement never took place. Black people were never integrated. Cripples never escaped institutions. Churches abound and gay people are firmly and solidly in the closet. It is a very white world. People know their place. It is in short a fantasy.
The BSA is in my estimation a social tragedy. The perpetrators of this tragedy are not to be found at the grass roots level who in my experience largely do their best. Exception exist of course. The heart of the problem is the BSA is rotten at the core. The professional scouters, the national organization itself is hopelessly backward and dominated by the Mormon Church. Scouting is the official youth activity of Church of Latter day Saints. From this core come directives to ban gay men, women and boys. Atheists are targeted as well. Women fair little better. The "three Gs" are banned. It is a significant problem because in the last two decades the BSA is developing a new image--hate mongers that exclude. Hence my memories as a BSA scout leader are decidedly mixed. Some of my fondest memories of my son's childhood are associated with scouting events. But these memories are sullied by the needless bigotry we encountered. Important events held in inaccessible locations and the rigid refusal to move them in the name of tradition. I remember countless outings to scouting events on scout property without a single accessible bathroom. Again and again I was told we never had a paralyzed scout or scout leader. We never had the need to build a ramp or accessible toilet was a constant refrain. Sorry, you can just drop off your son and leave was always the solution. Inclusion? What a joke. Thus I was a bit teary eyed when I saw Tyrrell talk. I was jealous too. Few people were willing to support my efforts when involved with the scouts. I was surely never flown anywhere and given a standing ovation. This makes me wish we people with a disability were as powerful as gay rights groups that I respect and admire. And on this cold spring day I dream of a day when access is assumed and socially supported.
Wednesday, April 18, 2012
Better off Dead Than Disabled
In the last week a few people have asked if I am going to comment on a day time TV show Dr. Phil. After my experience with Dr. OZ months ago I am gun shy to say the least about weighing in any topic discussed on day time TV. I do not get the allure of day time TV. The only time I would think of turning on the TV during the day would be to follow a breaking national news story or local weather alerts. I cannot imagine siting down in the middle of the day and watching a TV program. So with some trepidation I am going to make some general observations about Dr. Phil and how he recently advocated for the "mercy killing" of people with disabilities. I will not provide the link to his show. It is simply too offensive. Dr. Phil had a mother, Annette Corriveau, on his show who wanted to euthanasia her children. Yes, she wanted the right to kill her children. Is that putting it too harshly? I think not. Who else was on the show? The lawyer Geoffrey Fleiger who defended Jack Kevorkian. So much for balance. What the show was all about was pulling on viewers heart strings. Corriveau's children have Sanfilippo Syndrome. It was not clear what type they have. It was not clear the level of their cognition. It was not clear whether they were in pain. It was not clear what their daily life is like. It was not clear whether they could see or hear. It was not clear how much they are able to communicate. Inconvenient facts such as these only get in the way of the gut wrenching emotion TV programs thrive on.
No hard questions were asked. No one who actually spends time with Corriveau's children were interviewed. No one asked what their daily lives are like. No one asked why they have not left the institution they reside in for over two decades. No one asked Corriveau how she determined her children are suffering--a hard to access fact when she seems them infrequently. Apparently simply visiting her children is too upsetting. Yet Corriveau does the have the time to go on the Dr. Phil show and be interviewed on Canadian TV with Robert Latimer, a man who was convicted of murdering his disabled daughter. Corriveau is setting herself up to be the expert on when it is acceptable for a parent to kill their children. Worse yet, Canadians seem to be rewriting history as it pertains to Latimer. He is not identified as a convicted murder but as an expert on children and disability. What shocks me is the social support parents receive when they express a desire to kill their children with a disability. Oh, how horrible it must be to raise a special needs child. Oh, how you must suffer. Only these parents know what such a miserable existence parenting a child can entail. I am not exaggerating. When Dr. Phil asked for a show of hands as to who supports Corriveau virtually the entire audience raised their hand. I just hung my head.
I do not know if it is the weak economy, the health care reform debate, or that the divide between rich and poor is expanding daily but these are hard times for people with a disability and by extension anyone else that does not fit into society. I have never truly believed people thought I was better off dead as the disability rights slogan mockingly proclaims. That belief has been shattered in the last two years. I have no doubt people with a disability are perceived to be suffering and those people that have no experience with disability think we should be put out of our misery. I am not being mellow dramatic. I was offered assisted suicide in an underhanded way in 2010. Next week a paper will be put on line in advance of publication detailing my experience. The point, here is we are well on our way down a slippery slope if the masses are listening and watching people like Dr. Phil and Dr. Oz. Killing people with a disability is not seen as inherently wrong but rather an act of compassion, mercy even. Great for day time emotional tear jerking TV shows but way short of facts and devoid of reality. The fact is people with a disability lead rich and full lives. I am one of many. But I am one of many at risk. And that thought keeps me up at night and fearful of accessing the health care system that is hostile to my existence.
No hard questions were asked. No one who actually spends time with Corriveau's children were interviewed. No one asked what their daily lives are like. No one asked why they have not left the institution they reside in for over two decades. No one asked Corriveau how she determined her children are suffering--a hard to access fact when she seems them infrequently. Apparently simply visiting her children is too upsetting. Yet Corriveau does the have the time to go on the Dr. Phil show and be interviewed on Canadian TV with Robert Latimer, a man who was convicted of murdering his disabled daughter. Corriveau is setting herself up to be the expert on when it is acceptable for a parent to kill their children. Worse yet, Canadians seem to be rewriting history as it pertains to Latimer. He is not identified as a convicted murder but as an expert on children and disability. What shocks me is the social support parents receive when they express a desire to kill their children with a disability. Oh, how horrible it must be to raise a special needs child. Oh, how you must suffer. Only these parents know what such a miserable existence parenting a child can entail. I am not exaggerating. When Dr. Phil asked for a show of hands as to who supports Corriveau virtually the entire audience raised their hand. I just hung my head.
I do not know if it is the weak economy, the health care reform debate, or that the divide between rich and poor is expanding daily but these are hard times for people with a disability and by extension anyone else that does not fit into society. I have never truly believed people thought I was better off dead as the disability rights slogan mockingly proclaims. That belief has been shattered in the last two years. I have no doubt people with a disability are perceived to be suffering and those people that have no experience with disability think we should be put out of our misery. I am not being mellow dramatic. I was offered assisted suicide in an underhanded way in 2010. Next week a paper will be put on line in advance of publication detailing my experience. The point, here is we are well on our way down a slippery slope if the masses are listening and watching people like Dr. Phil and Dr. Oz. Killing people with a disability is not seen as inherently wrong but rather an act of compassion, mercy even. Great for day time emotional tear jerking TV shows but way short of facts and devoid of reality. The fact is people with a disability lead rich and full lives. I am one of many. But I am one of many at risk. And that thought keeps me up at night and fearful of accessing the health care system that is hostile to my existence.
Monday, April 16, 2012
TEDMED: Abysmal Transportation at a Great Conference
While I could wax poetic about the facilities and speakers there was one glaring flaw--transportation in the form of buses from my hotel to events all over Washington DC was problematic at best. And here I am being far too polite. Transportation was a disgrace, totally unacceptable. Prior to attending the conference I inquired multiple times about accessible transportation. The first reply was typical. Of course we have accessible transportation. When I inquired as to what that accessible transportation entails I was informed "some buses" have wheelchair lifts. At any other conference I would have interpreted "some buses" to mean you are on your own. We have an accessible bus but have not seen it since the Nixon Administration. However, given the conference was a TEDMED event I had higher hopes and expectations. I will say this about the buses. I was able to get to every event. That is as far as my praise can go. By itself this is an indictment of just how bad bus service is in America for people with a disability.
What I was told before I left for Washington DC was correct. Some buses were accessible. Not many, but some. If each and every bus that had a lift operated and the driver knew how to use the lift I would have experienced minor inconvenience. But as most people that use a wheelchair know just because a bus has a lift does not mean it works. I would estimate half the wheelchair lifts on "some buses" were not operational. This transformed my transportation experience from being a minor inconvenience to a major problem.
What problems did I encounter? The usual excuses abounded: "the lift is broken", "the key is missing", "I don't know how to use it", "the tie downs are gone", "I don't know how to use the tie downs" etc. At any other conference or tour of the city this would be expected. But we are not talking about any other conference or city tour. Major funding goes into the TEDMED conference. It is a spectacular conference, speakers uniformly superb, polished even, and all other events were extremely accessible. The Kennedy Center was a delight, bathrooms abounded, staff helpful and professional.
By the end of the second day I realized two things. One, at least two buses and as many as six would pass me by before I could get on. Some accessible buses became a lonely singular bus. I lost a great deal of time simply waiting and watching other delegates get on and off bus after bus after bus. This did not seem to bother any delegate or employees. Second, the transportation supervisor lied to me and was willing to say anything to get me to stop complaining. After watching many buses pass me by I confronted her and told her each and every bus with a lift had to be tested before it was put in service; and be tested by the driver. She said of course we do that. The next bus arrived and the driver told me he had never used a lift a before and had no idea how to operate it. I quickly learned the transportation supervisor was worthless. The actual drivers were the one's to know. In the end I was able to manage and did not miss any event. However, if I had trouble at a prestigious conference such as TEDMED what takes place at an ordinary conference? What happens to the average tourist with a disability who tries to use a trolly bus? These question make me think back to 2004 when my son and I tried to visit the new Air and Space Museum outside Dulles Airport. Just like I experienced at the TEDMED conference, the bus had a lift but it did not work. Eight years later it appears not much if anything has changed. Lip service is paid to accessible transportation. Try and use those pesky lifts and a new harsher reality emerges.
Monday, April 9, 2012
TEDMED
I am leaving early tomorrow morning for Washington DC. I will be attending the TEDMED conference. Thanks to the Hastings Center I received a full scholarship to attend. Without this support attending the conference would not have been possible. I am going as a delegate and scholar. Sounds impressive. I eagerly await this conference as I often watch the TED Talks. If you are not familiar with them check out You Tube or Netflix. The talks are uniformly engaging. I hope to get some good photos that I will try and post. I am somewhat nervous about transportation. Washington DC and accessible transportation has been problematic at best. There is a stark dichotomy between what is supposed to be accessible and what is actually accessible. I have been assured I will not encounter any problems. Gee, some how I think I have heard this before. Always get worried when I am told not to worry, it is a recipe for disaster.
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