In recent weeks I have read quite a few articles about the ADA that can only be deemed harmful. By harmful, I mean they are poorly researched, grossly wrong and anti ADA. The articles in question have appeared in mainstream newspapers and magazines that reach a national audience. I need not identify the articles in question as the larger issue that emerges from them as a collective is straight-forward: the ADA is bad and hurts large and small businesses. While the intent of the law is good, inclusion as a sort of philanthropic generosity, some pesky and cripples are using the ADA to line their own pockets with money via lawsuits. One article I read went as far as to suggest the ADA has done more harm than good. What makes these articles so dangerous is there is an ounce of truth as opposed to a pound of bull shit.
Let me set some facts clear: the ADA was a hopelessly compromised piece of legislation when it was passed into law. The Supreme Court spent more than a decade reducing its effectiveness and hopelessly confusing the general public as to who was and was not disabled. In spite of its profound flaws, the ADA and disability rights leaders have used the law to the best of their ability. But disability rights leaders are far from a united front--indeed I would contend they are hopelessly splintered. Worse yet the ADA has not in any way dramatically changed how Americans perceives disability in general or people with disabilities in particular. Discrimination is as rampant today as it was the day the ADA was passed. What has changed is the sort of discrimination people with disabilities encounter. Today there is a willful ignorance as it relates to disability rights. The average person unfamiliar with disability does not think of disability as being about civil rights and even if this thought crossed their mind there is the hazy knowledge a law was passed a long time ago that solved the problem.
When the ADA was passed hysterical claims about costs involved in making businesses accessible abounded. These fears turned out to be just that--baseless fears. No data past or present indicates the ADA is costly or hurts business large or small. In spite of this fact mainstream media outlets highlight stories that indicate otherwise. These stories abound. Look at any newspaper and one can read about business owner that "fear the ADA". Some businesses and cities "could be devastated" by the law. In short, the ADA is equated with financial ruin. This places the person with a disability willing to file a complaint under the ADA as the bad guy from the start. What is conveniently ignored is the ADA is very clear about what accessibility entails. The law in my experience is often ignored and business owners are content with slapping up a blue wheelchair logo and declaring themselves accessible. This is not reality. Reality is access is good not just for people with disabilities but countless others as well. Compliance is in the best interest of business owners. This line of reasoning never appears in press. In it place newspapers report about people with a disability who file multiple lawsuits in an effort to "shake down business owners." Lawyers of course are also profiting from this attack on business. Are some suits frivolous? Of course. However, every day I go out my door I come across businesses that are not accessible in spite of law. I park in parking lots that have curb cuts located in the wrong place or simply don't exist. I order cold cuts from delis that are in violation of the ADA each and every week. The fact is I could spend the rest of my life suing businesses over flagrant violations of the law. I do not do this because I perceive such an effort to be fruitless. What is needed is not a change in the law but the cultural demand for the law to be enforced. We need outrage, social outrage that all businesses and schools are not accessible. We need all people to demand the country be made accessible. I doubt I will ever see this take place but I can dream--and the ADA is but one measure of protection for my civil rights. It does not matter that the law is flawed for I know the law is on my side. This is not enough for real social change but at least it is a start.
Thursday, August 26, 2010
Wednesday, August 18, 2010
Peter Singer: Moral Iconoclast or Just Dangerous
I try to refrain from writing about Peter Singer. Those familiar with the health care debate, bioethics, Euthanasia, and animal rights will know his work. Singer is currently at Princeton University in the Center for Human Values. I was shocked when Princeton hired Singer. I knew of his work, controversial views and thought he was not a good match for Princeton, a notoriously stuffy institution. But in retrospect I was wrong--the philosophy department at Princeton was top notch and Singer would regularly put the university in the headlines. Princeton, I thought, was in a win win situation--it hired a renown scholar who was respected by his peers in philosophy and would be in the headlines. Afterall, some think he is the most outstanding contemporary philosophical mind in the world while others, myself included, think he is simply dangerous. I base my concern on a thorough understanding of the Singer's work. He is a productive, first rate scholar and from what I understand a true gentleman. This does not mean I like his work. Quite the contrary, I take exception to much of what he believes, especially as it relates to Euthanasia. Singer, like most scholars, does not like to be critiqued. In reply to those that have the nerve to critique him he often replies that his words are taken out of context. I will not let that happen. Below is a complete transcript of what Singer recently said in a short video clip posted at bigthink.com. I could not bring myself to embed the video itself such is my dislike for the man. The video clip is entitled "The Case for Allowing Euthanasia of Severely Handicapped Infants". Here is Singer's answer to one question:
"Question: Why do you think we should be allowed to euthanize sick babies?
Peter Singer: Let me start with why I got interested in writing about it, I was directing a bioethics center in Australia and we were contacted by doctors who had ethical dilemmas, they were working in neonatal intensive care units, intensive care units for very small children and they have conditions, for example, Spina Bifida in which in their view, it was not really a good thing for these babies to survive. The babies, if they did survive would need multiple operations, would be severely disabled in various ways. And often the parents also thought, given the description of the condition, it was not going to be a good thing for the baby to survive.
So these babies were essentially being not treated. And the result of being not treated was that almost all of them died before they were 6 months old. Some of them died in the first week or 2, some of them in the first month or 2 and other gradually throughout that first 6 months.
And this was a very draining experience for the parents, the doctors, the nurses, you had this small babies in the hospital, but not being treated in order to make them live, but nevertheless, living for quite a long time.
And the doctor said, “Are we doing the right thing here? Is this justifiable?” S we, my colleague, Helga Kuhse and I, looked at it and we decided that yes, it’s a reasonable decision for the parents and doctors to make that it was better that infants with this condition should not live, basically the more severe variance of this condition should not live. But we couldn’t defend the idea that the right thing to do then was to let them die, this seems slow and painful and as I said, terribly emotionally draining on their parents and others.
So, we said, “Look, the difficult decision is whether you want this infant to live or not. That should be a decision for the parents and doctors to make on the basis of the fullest possible information about what the condition is. But once you’ve made that decision, it should be permissible to make sure that baby dies swiftly and humanely. If that’s your decision, if your decision is that it’s better that the child should not live. It should be possible to ensure that the child dies swiftly and humanely.”
And so that’s what we proposed.
Now, that’s been picked up by a variety of opponents, both pro-life movement people and people in the militant disability movement, which incidentally didn’t really existed the time we first wrote about this issue. And they have taken us the stalking-horse, the boogeyman, if you like, because we’re up front in saying that we think this is how we should treat these infants.
I can understand to some extent why the pro-life movement takes us that way, but I think the disability movement ought to be just as upset about letting children die because they have a disability, and since that’s a very common practice in many hospitals, I’m not so sure why they’ve gone after us in particular rather than after the doctors who were actually doing it. Because I really don’t see the difference between letting the children the die, and making sure that their death comes swiftly and humanely."
Let's start with Spina Bifida, a condition that in the estimation of doctors, nurses, and parents "was not really a good thing for these babies to survive". The most severe form of Spina Bifida, Myelomeningocele, results in paralysis and life long urinary and bowel dysfunction. I will readily agree this is less than ideal but is it reason to end a child's life? I think not and the National Institute of Neurological Disorders and Strokes points out that most people with Spina Bifida "are of normal intelligence" whose physical problems range from severe to minor. Essentially doctors, nurses, and parents are deciding to end the life of a child who is cognitively intact. Again, why? Why end a child life who has Spina Bifida? According to Singer, to survive such a child would need "multiple operations, would be severely disabled in various ways". I do not have Spina Bifida. However, I did have a rare neurological condition that caused great pain and paralysis. I had dozens of spinal taps as a child, three massive spinal surgeries, and spent months on end in the hospital. This was in the late 1960s and 1970s when pediatric neurology was primitive at best. Yet no one suggested I should die. In fact, I am not be able to move well over half of my body, struggle to control my bowels and bladder but do not consider myself "severely disabled". Long ago when I characterized myself as such my mother hissed at me: "You can use your mind, the most important part of your body, consider yourself lucky". My mother was right and as a result I am alive. I have a family, a career and lead a happy life. If Singer were my parent I might be dead. This is a sobering thought.
As for Singer's opponents, he appears to have a particular dislike for "people in the militant disability movement". This I assume is a veiled reference to Not Dead Yet. Somehow Singer can overlook the pro-life movement, a truly militant movement with a history of violence whose extreme views are out of touch with much of mainstream American society but he has a special disdain for people in the disability rights. This I don't get. However I do have an idea: I suspect Singer's dislike for the people in the so called "militant disability movement" is tied to demonstrations that took place at Princeton when he was hired in 1999. Singer knew his hiring was not going to simply pass by without protest. But of the hundreds of protesters it seems that Not Dead Yet bothered him the most. Not Dead Yet protesters blocked doors, some chained themselves and their wheelchairs to buildings and were removed by police. Singer notes this made for front page headlines and good television. What Singer did not do is actually engage with Not Dead Yet or other people in the disability rights movement. Princeton and Singer considered such actions below them. Ironically when Singer did engage disability rights, notably with Harriett McBryde Johnson he got whipped badly. Here I refer to the NY Times Magazine article, "Unspeakable Conversations" Johnson published and reprinted in her memoir Too Late to Die Young.
I find it hard to believe a smart man like Singer, and he is undoubtedly smart, cannot understand disability rights. He wonders why "they've gone after us in particular rather than the doctors who are actually doing it". I can tell you why. Singer and those who share his views see nothing positive about disability. They adhere to a medical model of disability, reject disability as a positive identity, and fail to grasp the social implications of disability. Note the use of the word social--Singer firmly grasps the financial and economic aspects of disability. Like others, he thinks we are too costly to justify. Our existence is not feasible, the resources used to keep those of us with severe disabilities alive would go further and serve the greater good if spent on people without disabilities, preferably those that can make an economic contribution to society. In essence he is providing the theoretical justification for the actions of the doctors who are ending the life of people with a disability. To me, this makes him far more dangerous than any doctor however misguided they might be.
I will give Singer one sort of praise: he certainly gets people talking. I am not sure he gets them thinking however. I also have no doubt he has a huge ego. I was stunned to read a volume published in his honor--Peter Singer Fires Back edited by Jeffrey A. Schaler. The book was supposed to be Singer "under fire" from his critics and give him an opportunity to "fire back". This is a great idea whose execution was badly mangled. The success of such an approach rest upon a well balanced and mutually respectful exchange. This did not take place as Singer and his ideas were a sacred cow. Hyperbole abounded and I knew I was in trouble by page XXIV when the editor wrote "the level of vituperation Peter Singer has had to endure is not unlike what Socrates had to go through". Yikes, that is about as over the top as I can ever recall reading in a supposedly academic text. Only one entry really stuck out--and that was by Steve Drake, research analyst for Not Dead Yet. The two men do not like one another nor do they respect one another. This made for interesting fireworks but not much more. This is unfortunate but expected when it comes to Singer. He does not honestly engage critics and disability rights is one such field he rejects out right, with little or no serious consideration. I wish this were not the case. Singer like many others could learn a lot about disability rights--even from militants like me and Not Dead Yet. All it takes is an open mind.
"Question: Why do you think we should be allowed to euthanize sick babies?
Peter Singer: Let me start with why I got interested in writing about it, I was directing a bioethics center in Australia and we were contacted by doctors who had ethical dilemmas, they were working in neonatal intensive care units, intensive care units for very small children and they have conditions, for example, Spina Bifida in which in their view, it was not really a good thing for these babies to survive. The babies, if they did survive would need multiple operations, would be severely disabled in various ways. And often the parents also thought, given the description of the condition, it was not going to be a good thing for the baby to survive.
So these babies were essentially being not treated. And the result of being not treated was that almost all of them died before they were 6 months old. Some of them died in the first week or 2, some of them in the first month or 2 and other gradually throughout that first 6 months.
And this was a very draining experience for the parents, the doctors, the nurses, you had this small babies in the hospital, but not being treated in order to make them live, but nevertheless, living for quite a long time.
And the doctor said, “Are we doing the right thing here? Is this justifiable?” S we, my colleague, Helga Kuhse and I, looked at it and we decided that yes, it’s a reasonable decision for the parents and doctors to make that it was better that infants with this condition should not live, basically the more severe variance of this condition should not live. But we couldn’t defend the idea that the right thing to do then was to let them die, this seems slow and painful and as I said, terribly emotionally draining on their parents and others.
So, we said, “Look, the difficult decision is whether you want this infant to live or not. That should be a decision for the parents and doctors to make on the basis of the fullest possible information about what the condition is. But once you’ve made that decision, it should be permissible to make sure that baby dies swiftly and humanely. If that’s your decision, if your decision is that it’s better that the child should not live. It should be possible to ensure that the child dies swiftly and humanely.”
And so that’s what we proposed.
Now, that’s been picked up by a variety of opponents, both pro-life movement people and people in the militant disability movement, which incidentally didn’t really existed the time we first wrote about this issue. And they have taken us the stalking-horse, the boogeyman, if you like, because we’re up front in saying that we think this is how we should treat these infants.
I can understand to some extent why the pro-life movement takes us that way, but I think the disability movement ought to be just as upset about letting children die because they have a disability, and since that’s a very common practice in many hospitals, I’m not so sure why they’ve gone after us in particular rather than after the doctors who were actually doing it. Because I really don’t see the difference between letting the children the die, and making sure that their death comes swiftly and humanely."
Let's start with Spina Bifida, a condition that in the estimation of doctors, nurses, and parents "was not really a good thing for these babies to survive". The most severe form of Spina Bifida, Myelomeningocele, results in paralysis and life long urinary and bowel dysfunction. I will readily agree this is less than ideal but is it reason to end a child's life? I think not and the National Institute of Neurological Disorders and Strokes points out that most people with Spina Bifida "are of normal intelligence" whose physical problems range from severe to minor. Essentially doctors, nurses, and parents are deciding to end the life of a child who is cognitively intact. Again, why? Why end a child life who has Spina Bifida? According to Singer, to survive such a child would need "multiple operations, would be severely disabled in various ways". I do not have Spina Bifida. However, I did have a rare neurological condition that caused great pain and paralysis. I had dozens of spinal taps as a child, three massive spinal surgeries, and spent months on end in the hospital. This was in the late 1960s and 1970s when pediatric neurology was primitive at best. Yet no one suggested I should die. In fact, I am not be able to move well over half of my body, struggle to control my bowels and bladder but do not consider myself "severely disabled". Long ago when I characterized myself as such my mother hissed at me: "You can use your mind, the most important part of your body, consider yourself lucky". My mother was right and as a result I am alive. I have a family, a career and lead a happy life. If Singer were my parent I might be dead. This is a sobering thought.
As for Singer's opponents, he appears to have a particular dislike for "people in the militant disability movement". This I assume is a veiled reference to Not Dead Yet. Somehow Singer can overlook the pro-life movement, a truly militant movement with a history of violence whose extreme views are out of touch with much of mainstream American society but he has a special disdain for people in the disability rights. This I don't get. However I do have an idea: I suspect Singer's dislike for the people in the so called "militant disability movement" is tied to demonstrations that took place at Princeton when he was hired in 1999. Singer knew his hiring was not going to simply pass by without protest. But of the hundreds of protesters it seems that Not Dead Yet bothered him the most. Not Dead Yet protesters blocked doors, some chained themselves and their wheelchairs to buildings and were removed by police. Singer notes this made for front page headlines and good television. What Singer did not do is actually engage with Not Dead Yet or other people in the disability rights movement. Princeton and Singer considered such actions below them. Ironically when Singer did engage disability rights, notably with Harriett McBryde Johnson he got whipped badly. Here I refer to the NY Times Magazine article, "Unspeakable Conversations" Johnson published and reprinted in her memoir Too Late to Die Young.
I find it hard to believe a smart man like Singer, and he is undoubtedly smart, cannot understand disability rights. He wonders why "they've gone after us in particular rather than the doctors who are actually doing it". I can tell you why. Singer and those who share his views see nothing positive about disability. They adhere to a medical model of disability, reject disability as a positive identity, and fail to grasp the social implications of disability. Note the use of the word social--Singer firmly grasps the financial and economic aspects of disability. Like others, he thinks we are too costly to justify. Our existence is not feasible, the resources used to keep those of us with severe disabilities alive would go further and serve the greater good if spent on people without disabilities, preferably those that can make an economic contribution to society. In essence he is providing the theoretical justification for the actions of the doctors who are ending the life of people with a disability. To me, this makes him far more dangerous than any doctor however misguided they might be.
I will give Singer one sort of praise: he certainly gets people talking. I am not sure he gets them thinking however. I also have no doubt he has a huge ego. I was stunned to read a volume published in his honor--Peter Singer Fires Back edited by Jeffrey A. Schaler. The book was supposed to be Singer "under fire" from his critics and give him an opportunity to "fire back". This is a great idea whose execution was badly mangled. The success of such an approach rest upon a well balanced and mutually respectful exchange. This did not take place as Singer and his ideas were a sacred cow. Hyperbole abounded and I knew I was in trouble by page XXIV when the editor wrote "the level of vituperation Peter Singer has had to endure is not unlike what Socrates had to go through". Yikes, that is about as over the top as I can ever recall reading in a supposedly academic text. Only one entry really stuck out--and that was by Steve Drake, research analyst for Not Dead Yet. The two men do not like one another nor do they respect one another. This made for interesting fireworks but not much more. This is unfortunate but expected when it comes to Singer. He does not honestly engage critics and disability rights is one such field he rejects out right, with little or no serious consideration. I wish this were not the case. Singer like many others could learn a lot about disability rights--even from militants like me and Not Dead Yet. All it takes is an open mind.
Friday, August 13, 2010
Geeks and Wheelchairs: Cultures Apart
My son loves technology as do I. However, we radically depart from one another in how we perceive that technology is used. Like many anthropologists, I think technological innovation often takes place before a society has learned how to incorporate new technology into its social structure. There is as a result a struggle to appropriately use new inventions for members of society. This was true thousands of years ago and not much has changed. This thought came to mind when my son sent me an article from SlashGear.com about a robotic wheelchair that uses sensors to follow people. Yes, the wheelchair follows the mighty all knowing bipedal people who know the way. This is very Wizard of Oz and Yellow Brick Trail minus the Wicked Witch of the West. This technological breakthrough was invented at the Human-Robotic Interaction Center in Saitama University, Japan. The people that run SlashGear.com may know a lot about technology but they don't know anything about people who use wheelchairs. Not the use of the word use here--I use a wheelchair. It is an empowering technological device by itself (no robotics needed). But to others, like the people at SlashGear, robotic wheelchairs that follow bipedal people are "a great way for helpers to help those confined to a wheelchair". Wait, it gets worse. The robotic wheelchair is a "great idea" because "a wheelchair bound person's companion usually has to push them around, and therefore if something comes up where they need immediate assistance, they may not be able to get to them fast enough. But having the wheelchair follow them, and therefore freeing up their hands, makes that assistant all the more helpful". And, yes, amazingly it gets even worse! "And thanks to the distance sensor, the wheelchair can avoid not only stationary obstacles, like chairs and desks, but also people".
Wow, where should I start. The robotic wheelchair assumes a stunning level of dependence on "helpers". It is assumed that a person who uses a wheelchair needs help at all times and that help must come fast. The person that uses the wheelchair can never lead his or her bipedal companion, oops, I mean "helper". Again, this assumes the bipedal person will always lead the way. As for the distance sensors, I am sure bipedal people can now rest easy knowing they will not be run over by roving hordes of "wheelchair bound" people. I never knew I was so dangerous until I read about these life saving distance centers.
Excuse my sarcasm above. I put the robotic wheelchair up there with the human exoskeleton for paralyzed people in terms of silliness. The robotic wheelchair is a classic example where a technological innovation is designed to meet a perceived need that does not exist. I can think of many things about wheelchair use that could be improved but it does not include any devices that highlight dependence rather than independence. And this gets to the heart of the problem. I see my wheelchair as a powerful tool of empowerment. I truly love my wheelchair and know that without it my life would ground to a halt. Crawling is just not an option. Yet few people who do not use a wheelchair think the same way as I and others who use a wheelchair. No, for most a wheelchair is bad, very bad. Great efforts will be made to get a person walking and I will readily admit it is the way we humans were designed to move. But not all humans can walk nor should they be pressured into thinking a wheelchair is inherently bad. I have spoken to many people who have told me how they wish they had started using a wheelchair months or years earlier. Their life was greatly enhanced by wheelchair use. The point is that we do not necessarily need technological innovations in terms of wheelchairs but rather a social revolution--one in which wheelchair use is seen as simply an alternate means of locomotion. I doubt I will ever see this social revolution take place. But who knows perhaps there is a geek out there that understands wheelchair use from a social and technological perspective and is working on a wheelchair that will radically alter my life. Why, I can even imagine myself as cool, envied by others. Now that would be a first!
Wow, where should I start. The robotic wheelchair assumes a stunning level of dependence on "helpers". It is assumed that a person who uses a wheelchair needs help at all times and that help must come fast. The person that uses the wheelchair can never lead his or her bipedal companion, oops, I mean "helper". Again, this assumes the bipedal person will always lead the way. As for the distance sensors, I am sure bipedal people can now rest easy knowing they will not be run over by roving hordes of "wheelchair bound" people. I never knew I was so dangerous until I read about these life saving distance centers.
Excuse my sarcasm above. I put the robotic wheelchair up there with the human exoskeleton for paralyzed people in terms of silliness. The robotic wheelchair is a classic example where a technological innovation is designed to meet a perceived need that does not exist. I can think of many things about wheelchair use that could be improved but it does not include any devices that highlight dependence rather than independence. And this gets to the heart of the problem. I see my wheelchair as a powerful tool of empowerment. I truly love my wheelchair and know that without it my life would ground to a halt. Crawling is just not an option. Yet few people who do not use a wheelchair think the same way as I and others who use a wheelchair. No, for most a wheelchair is bad, very bad. Great efforts will be made to get a person walking and I will readily admit it is the way we humans were designed to move. But not all humans can walk nor should they be pressured into thinking a wheelchair is inherently bad. I have spoken to many people who have told me how they wish they had started using a wheelchair months or years earlier. Their life was greatly enhanced by wheelchair use. The point is that we do not necessarily need technological innovations in terms of wheelchairs but rather a social revolution--one in which wheelchair use is seen as simply an alternate means of locomotion. I doubt I will ever see this social revolution take place. But who knows perhaps there is a geek out there that understands wheelchair use from a social and technological perspective and is working on a wheelchair that will radically alter my life. Why, I can even imagine myself as cool, envied by others. Now that would be a first!
Wednesday, August 11, 2010
More Sad News: Paul K. Longmore is Dead
Many in the disability rights community will have already have heard that Paul K. Longmore died. According to Longmore's Facebook page a friend posted that he died August 9, 2010. I am very upset by Longmore's death. Avid readers of this blog and my work will know I was heavily influenced by my former professor at Columbia University, Robert F. Murphy, author of the Body Silent. I deeply admired Murphy's scholarship. I don't get to write this statement too often though I wish I could. Longmore was another man whose scholarship and activism I admired. He was a scholar's scholar. Every citation I followed up on Longmore had referenced was correct. More than correct, the reference was well chosen and the quote perfectly apt. He was the first person in disability scholarship I read that seemed able to combine rigorous scholarship and activism--a requirement in my estimation for people in the field. Longmore also studied and wrote about disability history and I always learned something from his writings. It did not matter to me if the work he published appeared in Ragged Edge or Reviews in American History. I was always assured I would earn something new and original.
I sincerely hope Longmore's death will receive some public attention beyond the world of disability studies and activism. He was an important scholar and activist. I never met Longmore in person. However, when I was stuck on a complex and controversial issue I was writing about I would send him an email asking for help. Longmore always replied in detail and with obvious concern. He was in my estimation a giving scholar, willing to help others. We scholars tend to live in isolation but that I suspect was not Longmore's way. He was out there as my son likes to say about people who fail to conform. Last night as I fell asleep I took out one of Longmore's books and read various passages. The book I chose was my favorite--Why I Burned My Book and Other Essays on Disability (2003). I came across one passage I have read, reread, and highlighted with multiple stars and exclamation points. Hence it seems somehow fitting to end this entry with Longmore's own words:
"I have long believed that disability experiences can supply tools for a profound analysis of modern cultures in general and American culture in particular. The very features of disability that have caused those cultures to devaluate people with disabilities so fiercely can provide disabled people a degree of cultural--and moral-independence, clarifying distance of outsidership. From the perceptual advantage of that position, disabled intellectuals could formulate a distinctive critical inspection of contemporary societies, disabled people could fashion a distinctive set of values rooted in disability experience that could serve as an alternative to dominant values".
I sincerely hope Longmore's death will receive some public attention beyond the world of disability studies and activism. He was an important scholar and activist. I never met Longmore in person. However, when I was stuck on a complex and controversial issue I was writing about I would send him an email asking for help. Longmore always replied in detail and with obvious concern. He was in my estimation a giving scholar, willing to help others. We scholars tend to live in isolation but that I suspect was not Longmore's way. He was out there as my son likes to say about people who fail to conform. Last night as I fell asleep I took out one of Longmore's books and read various passages. The book I chose was my favorite--Why I Burned My Book and Other Essays on Disability (2003). I came across one passage I have read, reread, and highlighted with multiple stars and exclamation points. Hence it seems somehow fitting to end this entry with Longmore's own words:
"I have long believed that disability experiences can supply tools for a profound analysis of modern cultures in general and American culture in particular. The very features of disability that have caused those cultures to devaluate people with disabilities so fiercely can provide disabled people a degree of cultural--and moral-independence, clarifying distance of outsidership. From the perceptual advantage of that position, disabled intellectuals could formulate a distinctive critical inspection of contemporary societies, disabled people could fashion a distinctive set of values rooted in disability experience that could serve as an alternative to dominant values".
Thursday, August 5, 2010
Great Comment on the ADA
I am not into computer games. However, I do keep up with the gaming industry and play some games. I do this for two reasons: first, I need to be able to communicate with my son. In his estimation I am woefully ignorant but for an "old guy" not too bad when I play Xbox with him. Second, computer games are a fundamental part of of life for college the college students I teach. A working knowledge of computer gaming is required to effectively communicate with them. Given this, I periodically read Xbox magazine (which I dislike) and visit various gaming websites. One such website, Able Gamer, is about not just computer gaming but evaluates how accessible games are to people with a disability. I was struck by A quote I read this morning that perfectly mirrored my views about the ADA. Read the below carefully because it is spot on:
"What the ADA does is gives us a means for making and benchmarking progress over the years. Twenty years from now I hope there's no such thing as an inaccessible subway, or a job that can't be modified for a qualified person who is house-bound, or a cell phone that plays videos without captions. Right now, we in the disability community push for this, and mostly we get backlash. There has not been that significant, pivotal point where businesses and our larger society is saying, 'How dare we think we can create a product or service that is totally unusable for the disabled?" Especially if it's a technology product, because the disabled are probably the group that will reap the highest benefit from it, whether it's an e-reader or a smart phone or a video game console. We still have to change our thinking in America about disabilities. The ADA is there as a backdrop, but we still need a larger social movement or else we are going to end up trying to legislate everything we want.
An important part of equality is the recognition that people deserve real rights beyond legislative concessions. Although the letter of the law is realized, the spirit of the law, inclusion, has yet to be realized. Until that happens, the fight for people with all levels of ability continues."
Backlash--I know all about this. For the last thirty years I have heard people moan and groan about the cost of making various buildings accessible--most notably schools. This backlash is common place. Yet no one thinks about the cost of not making our social environment accessible. We people with a disability deserve rights and those rights need to be recognized and supported. This has not taken place in spite of the fact the ADA is 20 years old--a point well made in the above quote. When there is no backlash against making our social environment accessible to all and our rights, the civil rights of people with a disability, are supported, then and only then will I truly be equal to others. And imagine I read this at a gamer website. There really is hope for the future as I doubt many "old guys" are reading this material.
"What the ADA does is gives us a means for making and benchmarking progress over the years. Twenty years from now I hope there's no such thing as an inaccessible subway, or a job that can't be modified for a qualified person who is house-bound, or a cell phone that plays videos without captions. Right now, we in the disability community push for this, and mostly we get backlash. There has not been that significant, pivotal point where businesses and our larger society is saying, 'How dare we think we can create a product or service that is totally unusable for the disabled?" Especially if it's a technology product, because the disabled are probably the group that will reap the highest benefit from it, whether it's an e-reader or a smart phone or a video game console. We still have to change our thinking in America about disabilities. The ADA is there as a backdrop, but we still need a larger social movement or else we are going to end up trying to legislate everything we want.
An important part of equality is the recognition that people deserve real rights beyond legislative concessions. Although the letter of the law is realized, the spirit of the law, inclusion, has yet to be realized. Until that happens, the fight for people with all levels of ability continues."
Backlash--I know all about this. For the last thirty years I have heard people moan and groan about the cost of making various buildings accessible--most notably schools. This backlash is common place. Yet no one thinks about the cost of not making our social environment accessible. We people with a disability deserve rights and those rights need to be recognized and supported. This has not taken place in spite of the fact the ADA is 20 years old--a point well made in the above quote. When there is no backlash against making our social environment accessible to all and our rights, the civil rights of people with a disability, are supported, then and only then will I truly be equal to others. And imagine I read this at a gamer website. There really is hope for the future as I doubt many "old guys" are reading this material.
Wednesday, August 4, 2010
Cranky Thoughts on the ADA
On July 26, the 20th anniversary of the ADA, I had surgery. This little irony amused me as the hospital presented more than a few physical obstacles. For the past week I have read the few reports mainstream news outlets published about the impact the ADA has had on society. Most of these articles were vacuous and laudatory, devoid of insight or depth. I also read disability rights blogs and editorials. These were far superior but none resonated with me. Sure the ADA has helped legally, the country is physically more accessible yet social prejudice, though different from 20 years ago, is rampant. Since I got home from the hospital I have tried to write about the ADA's 20th anniversary and meaning. Each and every effort I have made has been a dismal failure. How do you sum up 20 years of social change and a hopelessly flawed law in a few paragraphs? After much thought I have come to the conclusion this is not possible. Instead I will address two overwhelming problems people with a disability encounter:
First, unemployment and by extension education. Twenty years ago 70% of people with a disability of working age were unemployed. This figure has not changed by more than a few percentage points since the ADA became the law. Thus in terms of employment opportunities the ADA has been a dismal failure. Why are people with disabilities unemployed in such great numbers? Two reasons stand out: flat out bigotry on the part of employers. If a person with a disability applies for a job and a person without a disability applies for the same job and are equally qualified I would bet 99 times out of 100 the person without a disability will get the job. I call this blatant discrimination. But how does one go about proving this? To date employment discrimination complaints that end up in court invariably end in favor of the employer (as in 98% of the time). The other problem related to employment for people with a disability is that as a group we are poorly educated--only one in four people with a disability has a college education and more than 17% do not earn a high school diploma. Without an adequate education the barriers to employment, that is a living wage, are overwhelming. Add in mass transportation systems remain inhospitable to inclusion and as a result getting to work inherently problematic. Is it an wonder then why so few people with a disability are employed.
Second, the ADA is not in any way thought to be civil rights legislation. Readers of this blog will know the ADA is civil rights education but do your neighbors know this? Does the teacher in charge of educating your child think of the ADA as civil rights education? Is disability rights included in secondary school text books on civil rights movements? Is disability rights part of the curriculum at colleges and universities? How about small or large businesses? Do they perceive the ADA as civil rights legislation or an architectural compliance requirement that must be met to satisfy the federal government? The answer to these questions in my experience is a resounding no. And here is where the ADA has utterly failed--it has made the country physically more accessible but that physical access has not been matched by social change. Exceptions exist--some businesses do indeed hire people with a disability and go out of their way to do so. Some universities are 100% accessible and teach disability studies as part of its core curriculum. These companies and universities are the exception not the rule.
Here is my wish--force people to study, read and look at the history of the disability rights movement in the 1970s. Go to You Tube and look at the Disability Rights and Education Defense Fund (DREDF) videos. Watch Judy Heumann assert herself and state "We will no longer allow the government to oppress disabled individuals. We want the law enforced. We will accept no more discussion of segregation". And here comes the best part of Heuman's words: "And I would appreciate it if you would stop shaking your head in agreement when I don't think you understand what we are talking about". Goodness, what bad ass or as I prefer what a bad cripple. Her words resonated in 1977. Her words resonate in 2010. What we need is a asocial revolution--one the ADA was supposed to herald.
First, unemployment and by extension education. Twenty years ago 70% of people with a disability of working age were unemployed. This figure has not changed by more than a few percentage points since the ADA became the law. Thus in terms of employment opportunities the ADA has been a dismal failure. Why are people with disabilities unemployed in such great numbers? Two reasons stand out: flat out bigotry on the part of employers. If a person with a disability applies for a job and a person without a disability applies for the same job and are equally qualified I would bet 99 times out of 100 the person without a disability will get the job. I call this blatant discrimination. But how does one go about proving this? To date employment discrimination complaints that end up in court invariably end in favor of the employer (as in 98% of the time). The other problem related to employment for people with a disability is that as a group we are poorly educated--only one in four people with a disability has a college education and more than 17% do not earn a high school diploma. Without an adequate education the barriers to employment, that is a living wage, are overwhelming. Add in mass transportation systems remain inhospitable to inclusion and as a result getting to work inherently problematic. Is it an wonder then why so few people with a disability are employed.
Second, the ADA is not in any way thought to be civil rights legislation. Readers of this blog will know the ADA is civil rights education but do your neighbors know this? Does the teacher in charge of educating your child think of the ADA as civil rights education? Is disability rights included in secondary school text books on civil rights movements? Is disability rights part of the curriculum at colleges and universities? How about small or large businesses? Do they perceive the ADA as civil rights legislation or an architectural compliance requirement that must be met to satisfy the federal government? The answer to these questions in my experience is a resounding no. And here is where the ADA has utterly failed--it has made the country physically more accessible but that physical access has not been matched by social change. Exceptions exist--some businesses do indeed hire people with a disability and go out of their way to do so. Some universities are 100% accessible and teach disability studies as part of its core curriculum. These companies and universities are the exception not the rule.
Here is my wish--force people to study, read and look at the history of the disability rights movement in the 1970s. Go to You Tube and look at the Disability Rights and Education Defense Fund (DREDF) videos. Watch Judy Heumann assert herself and state "We will no longer allow the government to oppress disabled individuals. We want the law enforced. We will accept no more discussion of segregation". And here comes the best part of Heuman's words: "And I would appreciate it if you would stop shaking your head in agreement when I don't think you understand what we are talking about". Goodness, what bad ass or as I prefer what a bad cripple. Her words resonated in 1977. Her words resonate in 2010. What we need is a asocial revolution--one the ADA was supposed to herald.
Saturday, July 31, 2010
RIP John Callahan
As many readers will already know John Callahan the controversial quadriplegic alcoholic cartoonist died a few days ago--precisely two days before the 20th anniversary of the ADA. I had hoped he would draw a typically ironic if not nasty cartoon to commemorate the ADA. Perhaps because of my surgery I am crankier than usual but I must say I tired of hearing about all the great things the ADA has done for people with disabilities. Yes, the ADA is helpful, a fact pointed out by numerous mainstream news media outlets. However, no mainstream media resource really delved deeply into the ADA and how it has affected the daily life of people with a disability. Given this, I find the death of Callahan to be of particular interest. Calllahan, like me, was a bad cripple for much of his life. We were both paralyzed in the 1970s, Callahan in 1972, me in 1978--well before the ADA was ever dreamed of. We both got first class rehabilitation--he went to Ranchos Los Amigos Hospital, 15 miles from Downey, CA. I went to rehabilitation at Columbia Presbyterian Hospital. These were vibrant days in the history of modern rehabilitation. No established procedures existed, therapists were making things up daily to enhance the lives of people with SCI. These were exciting times. Callahan and I coped by working to the point of exhaustion--fear will do that to a person--and drinking very hard and often. Where we departed was in career choices--I went into academics and Calllahan became a famous cartoonist. I loved and hated his cartoons. They were brutally honest, hysterically funny, twisted, and in some cases just plan sick. His first cartoon/poem was penned while he was at Ranchos Los Amigos. It depicted a quadriplegic writing "Quadriplegia, rose are red and begonias are thick, I can feel my hands, but I can't feel my dick".
Callahan's death inspired me to read his wonderful autobiography, Don't Worry He Won't Get Far on Foot written in 1989. I have read this book many times. Our experiences were very similar and our shared anger deeply felt. None of our anger was based on the fact neither of us could walk. Our anger was based on the gross social inequities that existed then and now. In rereading Callahan's book I was struck by how much rehabilitation has changed for paralyzed people. Back in the 1970s rehabilitation typically lasted many months. Callahan was in rehab for six months. He attended Portland State University under the Vocational Rehabilitation Act. He struggled mightily with alcohol abuse and eventually straightened out his life through AA. What struck me in reading about Callahan's rehabilitation in the 1970s was its duration and free flow of ideas and solutions. No protocols had been established. What has not changed however is the cost of paralysis. Back then Callahan's primitive electric wheelchair cost $5,000, a hospital bed another $5,000, wheelchair repair costs $200 every few months, medication, $200 a month and persona care attendants another $800 a month. He estimated it cost $1,475 a month to be a quadriplegic. That left him a grand total of $75 a month to live on. He wrote that "I would sit at the kitchen table and try to decide what combination of rice, beans, ramen noodles, potatoes, and day old bread would last the longest and cause the least damage to my system".
Has the ADA helped the newly paralyzed? In a word, no. The average length of stay in a rehabilitation hospital for paralyzed person is 44 days. Yes, 44 days! That is woefully inadequate to learn how to cope with paralysis physically and mentally. We can thank the insurance industry for this. The average first year expense associated with being a paraplegic is $198,000. The average first year expense associated with being a quadriplegic is $417,000. The life time health care costs associated with being a paraplegic who is injured at 25 years old is $428,000. The life time costs associated with being a quadriplegic who is injured at 25 years old is $1.38 million dollars. These are 2010 averages. Half of the people who experience a spinal cord injury are insured. I don't think the ADA has done one whit of good for these people. The ADA sure has not helped me financially as my paralysis represents significant financial drain. Combine this with the glacial pace of social change as it pertains to attitudes toward disability in general and it is no wonder the vast majority of people with a disability are unemployed. This is what I rail against and it what Callahan's cartoons brilliantly amplified. Thus he noted in 1992 NY Times Magazine story that "Like me, they are fed up with people who presume to speak for the disabled. All the pity and the patronizing. That is what is truly detestable". These words just don't resonant but are still relevant in 2010. This is where the ADA has failed miserably.
Callahan's death inspired me to read his wonderful autobiography, Don't Worry He Won't Get Far on Foot written in 1989. I have read this book many times. Our experiences were very similar and our shared anger deeply felt. None of our anger was based on the fact neither of us could walk. Our anger was based on the gross social inequities that existed then and now. In rereading Callahan's book I was struck by how much rehabilitation has changed for paralyzed people. Back in the 1970s rehabilitation typically lasted many months. Callahan was in rehab for six months. He attended Portland State University under the Vocational Rehabilitation Act. He struggled mightily with alcohol abuse and eventually straightened out his life through AA. What struck me in reading about Callahan's rehabilitation in the 1970s was its duration and free flow of ideas and solutions. No protocols had been established. What has not changed however is the cost of paralysis. Back then Callahan's primitive electric wheelchair cost $5,000, a hospital bed another $5,000, wheelchair repair costs $200 every few months, medication, $200 a month and persona care attendants another $800 a month. He estimated it cost $1,475 a month to be a quadriplegic. That left him a grand total of $75 a month to live on. He wrote that "I would sit at the kitchen table and try to decide what combination of rice, beans, ramen noodles, potatoes, and day old bread would last the longest and cause the least damage to my system".
Has the ADA helped the newly paralyzed? In a word, no. The average length of stay in a rehabilitation hospital for paralyzed person is 44 days. Yes, 44 days! That is woefully inadequate to learn how to cope with paralysis physically and mentally. We can thank the insurance industry for this. The average first year expense associated with being a paraplegic is $198,000. The average first year expense associated with being a quadriplegic is $417,000. The life time health care costs associated with being a paraplegic who is injured at 25 years old is $428,000. The life time costs associated with being a quadriplegic who is injured at 25 years old is $1.38 million dollars. These are 2010 averages. Half of the people who experience a spinal cord injury are insured. I don't think the ADA has done one whit of good for these people. The ADA sure has not helped me financially as my paralysis represents significant financial drain. Combine this with the glacial pace of social change as it pertains to attitudes toward disability in general and it is no wonder the vast majority of people with a disability are unemployed. This is what I rail against and it what Callahan's cartoons brilliantly amplified. Thus he noted in 1992 NY Times Magazine story that "Like me, they are fed up with people who presume to speak for the disabled. All the pity and the patronizing. That is what is truly detestable". These words just don't resonant but are still relevant in 2010. This is where the ADA has failed miserably.
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