If there is one thing I do not have the patience for it is what I call being stroked. People with a disability will know what I am referring to. You arrive at a building and access is limited and there is no accessible bathroom. You find out who is responsible for making the facility accessible and are told the problem is being worked on. This person assures you with great sincerity that access is very important. You are told that "they are working hard on the problem". Fast forward two years, three years or five years later and the problem is still being worked on. Yes, they are working very hard--they are working very hard to con people with a disability and lead you to believe access is a priority. If you believe any person that tells you they are "working hard" on the issue of access than I have a bridge for sale in Brooklyn. What they want is for your crippled ass to go away and never come back. You my friend are not a priority. If you were access issues would be resolved promptly.
The above thoughts came to me as I read an article about how captions are coming--slowly--to internet sites. Closed captioning is mandatory on television but not for programing on the internet. Thus I thought of the actress Marlee Matlin. A truly beautiful woman who two years ago made a short lived splash as a deaf person on the show Dancing with the Stars. Viewers were amazed a deaf person could dance. How inspiring! Spare me! At the time Matlin appeared on the show she was assured that ABC was working hard on the problem of captioning. Fast forward two years later and ABC.com is still working on the problem of captioning on the internet. Two years. In terms of internet technology two years is an eternity. Anyone who purchases a computer knows the machine they purchase is obsolete within months and two years for some is the expected life expectancy of a machine. So, why is ABC still working hard on the problem? The answer is simple: captioning is not a priority. ABC does not care. If I have learned one thing after thirty years of using a wheelchair it is that social and architectural change only comes with a fight. ABC and popular websites such as Hulu, You Tube, Netflix among many others have failed to value captioning. It should be included as part of every single video posted on line. I do not think this is an unreasonable expectation. Every new building constructed is supposed to be accessible. Why not make every new video posted starting tomorrow have captioning. I can just hear the howls of protest. I am being unreasonable. My request, not the word here, request, is impossible to achieve immediately. I am told we need time to work on the problem of captioning. Exactly how much time does ABC need and who is working on the problem? How many hours are spent per day and how many individual have been assigned to the task? Answers to these questions will never be revealed because they would demonstrate the time and energy spent on the problem are negligible. This is infuriating. I would rather be told the truth than lied to and mislead. But lies are the norm as are misleading statements. Hence when I am told someone is working on the problem of access I translate this to mean two things: first, I should go away and never come back; second, no one is really working on the problem. The only way to change this cultural response, that is force people not to blow you off with false promises is to fight--make a stink, threaten a law suit, garner bad publicity etc. Being patient does not work. Exceptions do exist but they are rare and noteworthy. The norm is resistance. Afterall, do you really believe it takes ABC more than two years to solve the problem of captioning?
Wednesday, June 23, 2010
Tuesday, June 22, 2010
Education and Disability: Barriers, Barriers, and More Barriers
Over the weekend I read a long article that was accompanied by a slide show in the New York Times education section. The article, "A Struggle to Educate the Severely Disabled" by Sharon Otterman left me somewhat angry and deeply annoyed. When I calmed down I was not angry or annoyed but depressed. Profoundly depressed. The focus of the story was characterized by a unrelenting negativity. Nothing positive was mentioned about the life and education of students with what are characterized as "multiple disabilities". This term is a veritable garbage can used to classify a small fraction of students. The article makes it clear these students are costly and not well served by our current educational system. The reasons for this failure are complex and hinted at only in passing. Instead, the article questions the value of educating students with multiple disabilities and despite its length comes across quite superficial. What does resonate are multiple negative comments or assessments that could easily lead some to conclude a great deal of money is being wasted on students with multiple disabilities. For instance, one student, Donovan Forde, is discussed throughout the article and used by the author to hook the reader in. According to Otterman,
"After 15 years in the New York City school system, he is less reserved and more social, but otherwise has shown almost no progress".
"On standardized assessments he has trouble with tasks most children master in infancy"
"Educating Donovan remains a search for ways to reach him":
"Donovan's communications are hard to measure on assessments".
"One morning in mid-March, there was an accomplishment".
Ms. Mack who worked with Donovan for two years stated "I don't think he appreciates getting an education".
Based on the many comments posted by the New York Times educating students like Donovan is a waste of time, energy and siphons funds from "normal students". Such remarks I consider bigoted at worst or poorly chosen at best dominate the comments section and are as striking as the overwhelming negative tone of the article. The subtext clearly questions if students with multiple disabilities are worth educating. This is based on the premise that a valuable education, one worth funding, is to produce independent autonomous people capable of making a contribution to society---that is becoming employed. If this is not possible then the value of the education received is open to debate. Given this philosophical underpinning, Otterman is free to characterize students with multiple disabilities in the worst possible light. I will refrain from citing the most objectionable or unnecessary statements that dehumanized students. Instead I will focus on the more subtle comments. For example:
"Aides lift another student, Darius Jenkins, 15, out of his wheelchair and place him on an inclined plane, where he lies quivering and drooling slightly for most of the class. He is given a squeeze ball to hold several times, but each time, he drops it". I am sure the description is accurate but its tone objectionable. What if I described a so called "normal child" in first grade as follows: "Mary is constantly distracted. She cannot recognize her letters or read a single word. She picks her nose instead of following the book being read in class". If I were a parent I would not be happy with either of the above assessments.
What is very clear is that to educate students with multiple disabilities is very expensive--"they are the most costly to educate and least understood". According to Otterman "in 2009 the cost per student was $58,877, more than triple the citywide average of $17,696". Nationwide there are apparently 132,000 students with multiple disabilities out of the 6.5 million receiving some sort of "special education"at a cost of $74 billion a year. Much money is being spent but is it being spent widely? Here is where I agree with Otterman that the educational system for students with multiple disabilities is flawed. The system we have in place is failing students like Donovan mentioned above. IDEA, Individual with Disabilities Education Act, is part of the problem--it is not well suited for students with multiple disabilities. These students it seems to me thrive when given experiential and sensorial stimulation. The academic component of their education, though important, needs to be considered in a broader context. It is hard for any person to learn if they are physically uncomfortable and tense. Hence physical, occupational, and speech therapy are critically important as is adaptive physical education and recreation. The goals of educating students with multiple disabilities also needs to be reconsidered. Independence may not be possible but that does not mean an education lacks value or importance. This is where the real problem lies--educating students like Donovan is not valued. What is the point many wonder? Why spend so much money on a student with such limited communication?
The answer to the above question is glossed over as is its importance. Since 1975 all children in America are guaranteed a free public education. That is all children, those with and without a disability, have the right to an education. Let me put this in perspective. If I became disabled three years earlier than I did the public school I attended would have had the legal right to bar me from receiving an education. Thus I consider myself lucky. I was among the first Americans with a disability to be educated and escape institutional life. Sadly, this is exactly what happened to hundreds of thousands of people with a disability and an untold number of lives were destroyed. People with disabilities were shipped off to institutions with the encouragement of doctors, social workers, educators, priests, rabbis, and other professionals. It was thought to be the right thing to do. While not all institutions were like the notorious Willowbrook, institutional life should be perceived as a measure of last resort. Many other viable alternatives should exist--here I refer to group homes, day programs, and other residential adaptations. Today parents are often forced to institutionalize their children--people like Donovan.
Perhaps the skeptic reading this post is thinking I am confusing two different populations: those students with a cognitive disability as opposed to a physical disability. I see no difference culturally. The opposition I have encountered in my efforts to receive an education were significant. The only reason ramps and elevators are supposed to be the norm today is because disability advocates fought for them with vigor. Laws were passed and educational institutions begrudgingly provided access. Problems still abound decades later. As a father instead of student I would characterize my son's public school as hostile to students with a disability and my crippled existence. I have precious few allies and most parents, given tight budgets, would happily choose to do away with special education so more money can be spent on their "normal" children. This is an old story that is played out in my son's school as well as in Donovan's school. The people that spend the vast majority of time with students with disabilities are not so called "special eduction teachers but teacher aides. Aides come and go, receive no training and are among the lowest paid people in the school system. No wonder students with multiple disabilities do not receive more therapy--those employees earn to much.
Otterman wrote just one thing that struck a positive chord with me-"students like Donovan do not fit neatly into the paradigm for special education that has prevailed in the United States for more than a decade: inclusion. Congress ranks each state for its success in moving special education children into general education classes, addressing a core concern in the field--that too many children are not getting access to the regular curriculum". This begs the question of what happens to students that will not benefit from the "regular curriculum"? As already stated, I believe their presence is not wanted, their education flawed, and worst of all not valued. Such students are capable of learning and have the right to learn. Much depends upon how we define and perceive education. I can offer no ready solutions to the issues and problems I have addressed. However, I would suggest how we educate those students with multiple disabilities speaks volumes about who we are as people. Historically and to date we have as Americans have done an abysmal job in this endeavor. I know this for a fact and I suspect people like Donovan are aware of this at some level too.
"After 15 years in the New York City school system, he is less reserved and more social, but otherwise has shown almost no progress".
"On standardized assessments he has trouble with tasks most children master in infancy"
"Educating Donovan remains a search for ways to reach him":
"Donovan's communications are hard to measure on assessments".
"One morning in mid-March, there was an accomplishment".
Ms. Mack who worked with Donovan for two years stated "I don't think he appreciates getting an education".
Based on the many comments posted by the New York Times educating students like Donovan is a waste of time, energy and siphons funds from "normal students". Such remarks I consider bigoted at worst or poorly chosen at best dominate the comments section and are as striking as the overwhelming negative tone of the article. The subtext clearly questions if students with multiple disabilities are worth educating. This is based on the premise that a valuable education, one worth funding, is to produce independent autonomous people capable of making a contribution to society---that is becoming employed. If this is not possible then the value of the education received is open to debate. Given this philosophical underpinning, Otterman is free to characterize students with multiple disabilities in the worst possible light. I will refrain from citing the most objectionable or unnecessary statements that dehumanized students. Instead I will focus on the more subtle comments. For example:
"Aides lift another student, Darius Jenkins, 15, out of his wheelchair and place him on an inclined plane, where he lies quivering and drooling slightly for most of the class. He is given a squeeze ball to hold several times, but each time, he drops it". I am sure the description is accurate but its tone objectionable. What if I described a so called "normal child" in first grade as follows: "Mary is constantly distracted. She cannot recognize her letters or read a single word. She picks her nose instead of following the book being read in class". If I were a parent I would not be happy with either of the above assessments.
What is very clear is that to educate students with multiple disabilities is very expensive--"they are the most costly to educate and least understood". According to Otterman "in 2009 the cost per student was $58,877, more than triple the citywide average of $17,696". Nationwide there are apparently 132,000 students with multiple disabilities out of the 6.5 million receiving some sort of "special education"at a cost of $74 billion a year. Much money is being spent but is it being spent widely? Here is where I agree with Otterman that the educational system for students with multiple disabilities is flawed. The system we have in place is failing students like Donovan mentioned above. IDEA, Individual with Disabilities Education Act, is part of the problem--it is not well suited for students with multiple disabilities. These students it seems to me thrive when given experiential and sensorial stimulation. The academic component of their education, though important, needs to be considered in a broader context. It is hard for any person to learn if they are physically uncomfortable and tense. Hence physical, occupational, and speech therapy are critically important as is adaptive physical education and recreation. The goals of educating students with multiple disabilities also needs to be reconsidered. Independence may not be possible but that does not mean an education lacks value or importance. This is where the real problem lies--educating students like Donovan is not valued. What is the point many wonder? Why spend so much money on a student with such limited communication?
The answer to the above question is glossed over as is its importance. Since 1975 all children in America are guaranteed a free public education. That is all children, those with and without a disability, have the right to an education. Let me put this in perspective. If I became disabled three years earlier than I did the public school I attended would have had the legal right to bar me from receiving an education. Thus I consider myself lucky. I was among the first Americans with a disability to be educated and escape institutional life. Sadly, this is exactly what happened to hundreds of thousands of people with a disability and an untold number of lives were destroyed. People with disabilities were shipped off to institutions with the encouragement of doctors, social workers, educators, priests, rabbis, and other professionals. It was thought to be the right thing to do. While not all institutions were like the notorious Willowbrook, institutional life should be perceived as a measure of last resort. Many other viable alternatives should exist--here I refer to group homes, day programs, and other residential adaptations. Today parents are often forced to institutionalize their children--people like Donovan.
Perhaps the skeptic reading this post is thinking I am confusing two different populations: those students with a cognitive disability as opposed to a physical disability. I see no difference culturally. The opposition I have encountered in my efforts to receive an education were significant. The only reason ramps and elevators are supposed to be the norm today is because disability advocates fought for them with vigor. Laws were passed and educational institutions begrudgingly provided access. Problems still abound decades later. As a father instead of student I would characterize my son's public school as hostile to students with a disability and my crippled existence. I have precious few allies and most parents, given tight budgets, would happily choose to do away with special education so more money can be spent on their "normal" children. This is an old story that is played out in my son's school as well as in Donovan's school. The people that spend the vast majority of time with students with disabilities are not so called "special eduction teachers but teacher aides. Aides come and go, receive no training and are among the lowest paid people in the school system. No wonder students with multiple disabilities do not receive more therapy--those employees earn to much.
Otterman wrote just one thing that struck a positive chord with me-"students like Donovan do not fit neatly into the paradigm for special education that has prevailed in the United States for more than a decade: inclusion. Congress ranks each state for its success in moving special education children into general education classes, addressing a core concern in the field--that too many children are not getting access to the regular curriculum". This begs the question of what happens to students that will not benefit from the "regular curriculum"? As already stated, I believe their presence is not wanted, their education flawed, and worst of all not valued. Such students are capable of learning and have the right to learn. Much depends upon how we define and perceive education. I can offer no ready solutions to the issues and problems I have addressed. However, I would suggest how we educate those students with multiple disabilities speaks volumes about who we are as people. Historically and to date we have as Americans have done an abysmal job in this endeavor. I know this for a fact and I suspect people like Donovan are aware of this at some level too.
Thursday, June 17, 2010
Disasters: Sorry But You Are Not Important
In the event of a a disaster people with a disability are screwed. This is a harsh fact of life. I think about this every time I fly on a plane. I know the odds of surviving a plane crash are remote at best. I know my odds are far longer than most people I fly with. I would need help getting off any plane that crashed and I have no doubt when faced with a life and death situation precious few people will stick around to help me. This includes the flight attendants whose job description theoretically includes helping me. I live with the knowledge that in event of a disaster no help with be forthcoming. I do not let this knowledge prevent me from getting on a plane or other means of mass transportation. What does bother me is that our government makes no pretense that is will help people with a disability in the event of a disaster. Disaster studies make for scary reading--truly troubling if you have a disability. We people with a disability are the very bottom of the priority list. We will be the last, and I mean the very last, people saved. Shoot, pets have a better chance at survival and rescue.
This week the Federal Emergency Management Agency (FEMA) acknowledged what I already know--it cannot be expected to save people with a disability in the event of a natural disaster. Why is this the case? Marcie Roth, FEMA's senior advisor on disability issues says there is a lack of funds to do so. FEMA does have a plan in place though to evacuate, shelter, and supply people with a disability in case of a natural disaster. And who is in charge of this plan and what is the budget? One person is in charge and the budget is $150,00. So FEMA has a plan in theory and no ability to implement it. I feel so much safer! Of course, FEMA is also the government organization that in 2005 during Hurricane Katrina took three days to get water to the Superdome. Hence, my expectations, low to begin with, are really non existent now. The House Committee on Home Land security suggested FEMA create a registry--FEMA rejected this idea because it would give people with a disability a false sense of security. I translate this to mean no help with ever be forthcoming. No wonder I think my life has less value than others that can walk. FEMA has acknowledged this as have most disaster planners. My point is the next time people cluck about how we Americans are equal I suggest readers with a disability bring up disasters plan. They are proof positive our own government does not value our existence and lives. This is a fact of life I live with and don't like. It is not that I worry about disasters but rather the larger meaning of such plans and how they filter down into every day life.
This week the Federal Emergency Management Agency (FEMA) acknowledged what I already know--it cannot be expected to save people with a disability in the event of a natural disaster. Why is this the case? Marcie Roth, FEMA's senior advisor on disability issues says there is a lack of funds to do so. FEMA does have a plan in place though to evacuate, shelter, and supply people with a disability in case of a natural disaster. And who is in charge of this plan and what is the budget? One person is in charge and the budget is $150,00. So FEMA has a plan in theory and no ability to implement it. I feel so much safer! Of course, FEMA is also the government organization that in 2005 during Hurricane Katrina took three days to get water to the Superdome. Hence, my expectations, low to begin with, are really non existent now. The House Committee on Home Land security suggested FEMA create a registry--FEMA rejected this idea because it would give people with a disability a false sense of security. I translate this to mean no help with ever be forthcoming. No wonder I think my life has less value than others that can walk. FEMA has acknowledged this as have most disaster planners. My point is the next time people cluck about how we Americans are equal I suggest readers with a disability bring up disasters plan. They are proof positive our own government does not value our existence and lives. This is a fact of life I live with and don't like. It is not that I worry about disasters but rather the larger meaning of such plans and how they filter down into every day life.
Wednesday, June 16, 2010
Home Depot: A Missed Opportunity
I hate super stores. They are truly miserable places to shop. Customer service is non existent despite what the ads on television portray. When I go to stores such as Staples, Home Depot, Target etc. I have no expectations except cheap prices. However, I pay dearly for those lower prices. For me, I pay via ignorance, stunning stupidity, and often shockingly rude comments and questions. It is not just the customers that are the problem--employees are equally unaware. Yesterday, I was in the Home Depot and had a typically negative encounter. When I shop at the Home Depot I go during the week at an odd time. More often than not the store is devoid of customers and employees. Yesterday was typical. Aisle after aisle was empty and the store looked like a ghost town. All was well with the world until I encountered an employee I could not void. As I was passing her in a loud voice she stated "Hey, no speeding in the store. The speed limit is enforced". I stared at the woman with a face of stone. No comment was necessary. Oblivious, she cackled at her own joke clearly amused at my expense. What I did next bothers me--I did nothing. I kept on going and simply let my anger stew. In retrospect I should have stopped this employee and told her exactly how rude she was. I should have gone to customer service and complained. Her "joke" was not funny or remotely appropriate. I permitted myself to be the butt of this employee's joke. I felt less than human, reduced to an inanimate object told not to speed. I was not amused and have heard this so called joke about speeding more times than I care to remember. The joke tellers think they are hysterical. They are not funny at all. They are rude and thoughtless. This is a problem. How do I explain this so called joke is not funny? How do I tell them that I am deeply insulted and angry? How do I get them to acknowledge that I a human being?
I do not have any ready answers to the questions above. I wish I did. When I let such social violations pass without comment I feel like I missed an opportunity to educate and correct. Ignorance afterall can be cured by a little education. But why I wonder is such an educational effort left to me and other people with a disability. It is not our job to educate the masses about disability. Surely disability awareness is part of the secondary school curriculum or employee training. If this true, why does ignorance abound? Frankly, I am getting too old and way too cranky to tolerate ignorant comments. I try not to be confrontational but there are times I cannot or should not let comments go. Yesterday's speeding "joke" was one of those times I needed to stop and be confrontational. Aside from the ignorance of the question, the laughter at my expense hurt. Sadly, such comments are far from unusual. I have been subjected to rude comments from strangers for the last thirty years. These comments have not abated--they are uttered with stunning regularity. I have adapted by creating some pretty sharp if not devastating replies that shut people up fast. This makes me feel better but I am not sure how helpful this is. I suspect my cutting replies are quickly dismissed; I am perceived to be the "angry" disabled person that hates his lot in life, an antiquated stereotype. My other means of adapting is less than helpful--I have learned to avoid certain social situations. I never ever go to health food stores--an offer for a cure to paralysis via herbal remedy is common. I never go to church--someone will tell me if I pray hard enough I will be able to walk again. In the end, what I resent the most is being public property, having my humanity violated on a regular basis. I just do not understand why others, all other humans, don't get this.
I do not have any ready answers to the questions above. I wish I did. When I let such social violations pass without comment I feel like I missed an opportunity to educate and correct. Ignorance afterall can be cured by a little education. But why I wonder is such an educational effort left to me and other people with a disability. It is not our job to educate the masses about disability. Surely disability awareness is part of the secondary school curriculum or employee training. If this true, why does ignorance abound? Frankly, I am getting too old and way too cranky to tolerate ignorant comments. I try not to be confrontational but there are times I cannot or should not let comments go. Yesterday's speeding "joke" was one of those times I needed to stop and be confrontational. Aside from the ignorance of the question, the laughter at my expense hurt. Sadly, such comments are far from unusual. I have been subjected to rude comments from strangers for the last thirty years. These comments have not abated--they are uttered with stunning regularity. I have adapted by creating some pretty sharp if not devastating replies that shut people up fast. This makes me feel better but I am not sure how helpful this is. I suspect my cutting replies are quickly dismissed; I am perceived to be the "angry" disabled person that hates his lot in life, an antiquated stereotype. My other means of adapting is less than helpful--I have learned to avoid certain social situations. I never ever go to health food stores--an offer for a cure to paralysis via herbal remedy is common. I never go to church--someone will tell me if I pray hard enough I will be able to walk again. In the end, what I resent the most is being public property, having my humanity violated on a regular basis. I just do not understand why others, all other humans, don't get this.
Tuesday, June 15, 2010
Adaptation and Enhancement
FIXED (Trailer) from Regan Brashear on Vimeo.
The trailer for Fixed has put my brain in over drive the last few days. I am torn about the very idea of being fixed and title of the film. I do not think my body needs to be fixed. Let me be emphatic: I am quite happy with my body the way it is. I have no interest in stem cell research or a cure for paralysis. This does not mean I like being paralyzed. But paralysis is a fact of life for me and will not change. However, I can change society and the cultural response to paralysis and disability in general--this is why I write about and study disability. I want to make a concrete contribution to the lives of those with a disability. This effort is an uphill and often thankless battle. Disability is perceived to be a problem by many people and institutions. The medical establishment in particular views disability as the ultimate symbolic failure and seeks out cures no matter how impractical. I am not opposed to pure research but rather deal with the here and now. And right now I am wondering why disability in the broadest sense of the term yields so many stupid and needless inventions. I see silly and impractical inventions hailed all the time and can only shake my head in wonder. For example, a few months back I read about an exo-skeleton that enables a paraplegic to walk. This exo-skeleton may have a cool factor but is totally impractical. A wheelchair is a far superior technological device that is not only empowering but liberating. Yet no one thinks a wheelchair is cool. A wheelchair is bad, the ultimate symbol of disability and dependence. This is why the notion of being "fixed", the title of the trailer and film is so misleading. It ties directly into negative assumptions about disability. I deeply resent the popular cultural assumptions about disability because they are misguided and wrong. I do not see anything wrong with disability. Instead I see great beauty in disability--it brings out the best in the human spirit and our ability to adapt. And if we humans have proved anything we are very good at adapting--we have been doing it for millions of years. If you doubt me I suggest you read the work of Charles Darwin.
Why do I see beauty in disability? It has nothing, and I mean nil, about "overcoming" a disability or being "inspiring" to others. Such notions are demeaning and destructive. I find the way people adapt to their disabled bodies fascinating. One must discard all you have been taught and think in a radically different way. You must do this daily. This can entail something as mundane as how to navigate a street or get from the ground back into a wheelchair. The environment we people with a disability must navigate is hostile both practically and socially. Architectural barriers remain common place and discrimination is rampant. Thus we learn to adapt. This does not mean I am opposed to pure research for cures to a host of disabling conditions. I am also not opposed to human enhancement and technology. But my idea of enhancement does not often jive with people in the field. Enhancement in my estimation is too often rooted in a medical or profit model of disability. What people fail to realize is the beauty of disability and how it enhances our life. In the words of the artist Reva Lehrer: "In order to have a good life with a disability, you have to learn to re-invent your world almost hour by hour. You discover ways to re-imagine everything, and how not to take the average answers to everyday questions. There is a great deal of creativity in disability if you decide that "reality" is just a raw material for you to mould. So many times, these re-inventions have been the keys to open new doors for everyone."
The new doors Lehrer describes can take many different forms. These forms do not include sitting around hoping, praying or supporting a cure to paralysis. These doors do not include any technology that is an impractical attempt to mitigate disability, to make others feel more comfortable with the disabled body. Don't misunderstand the point I am trying to make. I support all efforts to enhance the quality of life of people with a disability. At issue is how is that life perceived. For instance, I keep up with the latest technological gadgets and advancements in the wheelchair, bike, and ski industry. I rapidly incorporate those advances into my life. None of this involves a desire to walk, to fit in and make my disability disappear. In my case, paralysis is part of who I am as a human being--it is an integral part of my identity. I see nothing wrong with my body. This viewpoint is radically different from what people in human enhancement think. They see the body as a platform to incorporate and improve the human body. Well, this works in some case but not all. For instance, I laud the advances in prosthetic technology. Such advances improve the quality of life for amputees. But I do question where and why such advances have been made. The fact amputation is one of the "signature" wounds of the Iraq war cannot be ignored. It is undoubtedly a factor in the evolution and advancement of such technology. At the other end of the spectrum we have the Ashley Treatment and growth attenuation. I consider this ethically unacceptable. It is a medical solution to a social problem, one that could be solved if we as a society provided the appropriate support services for those with cognitive and physical disabilities. Hence I find the words of people like George Devorsky who supported the Ashley Treatment disturbing at best.
As to the film Fixed that prompted me to write, I have great hopes it will be well done. The scene with John Hockenberry and his family is wonderful. I loved his book Moving Violations and have found his subsequent comments about disability thought provoking. I am usually in agreement with what Hockenberry has to say about disability. Interestingly, he has played with the idea of how to make disability cool. He has put lights on his wheelchair, painted it different colors and listened to some smart people--his children. I too listen to kids as they have no preconceived ideas about disability. This makes me wish we could put children in charger of the durable medical goods industry that has a penchant for treating its customers like dirt, making over priced and inferior products, and stifling innovation. Why is this this attitude common? It gets back to what I have been writing about since I began this blog--valuing the life of those that live with a disability. We are afterall creative people that exemplify human adaptability.
Friday, June 11, 2010
Anger: Political and Crippled
There is a fascinating article in the Washington Post dated June 9. The article by Dana Milbank, "Nancy Pelosi, the Liberal House Speaker, is Heckled by Liberals", is a mixture of astute political observation, rhetoric and ignorance in terms of disability issues. Those that follow disability rights will know I am referring to an ADAPT protest that briefly made the news early this week. ADPAT hit the news because they loudly heckled Nancy Pelosi. The news coverage was superficial at best--filler on a slow news day. In contrast, Milbank's article struck a chord with me. In her estimation, the ADPAT protest was the culmination of 17 months of anger that has been building against Obama. Who is angry with Obama? Why liberals of course who have collectively decided to "eat their own", specifically the "celebrated San Francisco liberal" Nancy Pelosi. Who are the angriest group of liberals? Yes, we crippled people are angry, very angry. In fact we are filled with rage! That's right the ADPAT protest was not about reason or politics but rage. A "wheelchair-bound woman named Carrie James" is singled out as your archetypical angry cripple. James screamed from her table with 15 other people "Our homes, not nursing homes". The protesters all wore orange t-shirts that proclaimed the "Community Choice Act Now" and had the audacity to unfurl bed sheet banners. In response Pelosi's body guards rushed forward and formed a protective ring around her. Pelosi refused to stop her speech and for "an excruciating half-hour. The hecklers screamed themselves hoarse, dominating Pelosi's speech through her concluding lines".
According to Milbank, some political movements unravel gradually but the ADAPT protest was proof positive that "Obama's hope-and-change left has faded" while conservative political movements such as the Tea Party are gaining popularity. I have no idea if Milbank's assessment is correct. If I am any indication, she may be right. I am disillusioned with Obama penchant to compromise, compromise and compromise some more characterized by some as "split the baby politics". Regardless, what fascinated me about Milbank's article was the way the ADAPT protesters were described and the reaction to their protest. ADAPT is angry, protesters filled with rage, absent of reason. They could not be reasoned with. Some audience members tried to get ADAPT to quiet down--an effort that only "worsened the disturbance". Apparently this caused James, the "wheelchair-bound" woman to shout louder because "the stakes are a little high". James is described as "pumping her fists into the air, she chanted "Hey, hey, ho, ho nursing homes have got to go!". The conference organizer, Robert Borosage, "shaking his head and licking his lips, tried to shoo the wheelchairs away from the podium". Clearly, ADPAT was an unwanted presence.
Missing from Milbank's article, aside from any semblance of political balance, is a basic understanding of ADAPT or why they are protesting. Pelosi, like Obama (I think), supports the Community Choice Act. Readers know this act will increase access to community services for people with disabilities designed to allow them to live at home thereby ending the institutional bias toward nursing home care. The CCA is legislation that is "long-languishing". Are some members of ADAPT angry? You bet they are. And I would quickly add they have every right to be angry. Obama and Pelosi support the CCA in name only. Hell will freeze over before they forcefully push this much needed legislation forward. This bothers me but what bothers me is more is the stereotype Milbank seemed to rely on. Here I refer to the notion that all people with a disability are angry. In the olden days this was referred to as a "cripple's disposition". What is over looked is why people with a disability are mad. The popular misconception is that we crippled people are mad because we have a disability, some sort of horrible physical deficit. This could not be farther from the truth. The reality is anger, crippled anger, stems from just one thing--social injustice. Social injustice takes many forms foremost among them blatant discrimination. Ad in a dose of stigma, economic deprivation, a stunningly high unemployment rate, and barriers to education and I maintain crippled people have every right to be angry. However, this is not discussed much less acknowledged. 20 years after the passage of the ADA American society has continued to categorically refuse to negotiate or accommodate our difference. This refusal is worthy of detailed discussion. As James pointed out the stakes are high and lives are at stake. Many have already died and countless others have suffered. Am I being melodramatic? In a word, no. If you doubt me go for a drive this summer. The odds are good that at some point you will pass a shuttered institution that dots the American landscape. Once upon a time thousands of people with disabilities were ware-housed in such places, led a compromised life, barred from society. We no longer institutionalize people with a disability but that does not mean we are equal. If that were the case we would not lead civil rights legislation like the ADA. More personally if people with a disability were equal I would not feel estranged from society. In part this is why I am angry, an anger that is well placed and misunderstood.
According to Milbank, some political movements unravel gradually but the ADAPT protest was proof positive that "Obama's hope-and-change left has faded" while conservative political movements such as the Tea Party are gaining popularity. I have no idea if Milbank's assessment is correct. If I am any indication, she may be right. I am disillusioned with Obama penchant to compromise, compromise and compromise some more characterized by some as "split the baby politics". Regardless, what fascinated me about Milbank's article was the way the ADAPT protesters were described and the reaction to their protest. ADAPT is angry, protesters filled with rage, absent of reason. They could not be reasoned with. Some audience members tried to get ADAPT to quiet down--an effort that only "worsened the disturbance". Apparently this caused James, the "wheelchair-bound" woman to shout louder because "the stakes are a little high". James is described as "pumping her fists into the air, she chanted "Hey, hey, ho, ho nursing homes have got to go!". The conference organizer, Robert Borosage, "shaking his head and licking his lips, tried to shoo the wheelchairs away from the podium". Clearly, ADPAT was an unwanted presence.
Missing from Milbank's article, aside from any semblance of political balance, is a basic understanding of ADAPT or why they are protesting. Pelosi, like Obama (I think), supports the Community Choice Act. Readers know this act will increase access to community services for people with disabilities designed to allow them to live at home thereby ending the institutional bias toward nursing home care. The CCA is legislation that is "long-languishing". Are some members of ADAPT angry? You bet they are. And I would quickly add they have every right to be angry. Obama and Pelosi support the CCA in name only. Hell will freeze over before they forcefully push this much needed legislation forward. This bothers me but what bothers me is more is the stereotype Milbank seemed to rely on. Here I refer to the notion that all people with a disability are angry. In the olden days this was referred to as a "cripple's disposition". What is over looked is why people with a disability are mad. The popular misconception is that we crippled people are mad because we have a disability, some sort of horrible physical deficit. This could not be farther from the truth. The reality is anger, crippled anger, stems from just one thing--social injustice. Social injustice takes many forms foremost among them blatant discrimination. Ad in a dose of stigma, economic deprivation, a stunningly high unemployment rate, and barriers to education and I maintain crippled people have every right to be angry. However, this is not discussed much less acknowledged. 20 years after the passage of the ADA American society has continued to categorically refuse to negotiate or accommodate our difference. This refusal is worthy of detailed discussion. As James pointed out the stakes are high and lives are at stake. Many have already died and countless others have suffered. Am I being melodramatic? In a word, no. If you doubt me go for a drive this summer. The odds are good that at some point you will pass a shuttered institution that dots the American landscape. Once upon a time thousands of people with disabilities were ware-housed in such places, led a compromised life, barred from society. We no longer institutionalize people with a disability but that does not mean we are equal. If that were the case we would not lead civil rights legislation like the ADA. More personally if people with a disability were equal I would not feel estranged from society. In part this is why I am angry, an anger that is well placed and misunderstood.
Thursday, June 10, 2010
Conjoined Twins, Disabilty and Ethics
Few books I read cause me to radically alter my preconceived ideas or thoughts. One such book that did this for me was One of Us by Alice Domurat Dreger. Dreger's book, subtitled Conjoined Twins and the Future of Normal, stunned me. Prior to reading One of Us I thought that the effort to separate conjoined twins was logical, the only viable choice parents had even if the mortality rate for such a procedure was very high. By the time I finished reading Dreger's book I learned that my preconceived ideas about conjoined twins, largely gleaned from the mass media, was wrong. Not only did I feel enlightened thanks to Dreger but I learned much about what she termed anatomical politics. Dreger's work successfully changed the archetypical story associated with conjoined twins and others with extraordinary human anatomies. She highlighted that the stories often told about people with unusual bodies involves changing that body to fit the social context. This led me to an "ah ha moment" that is all too rare in academics. The story of conjoined twins reveals a history of people who are comfortable with their own bodies. The problem is not with the unusual or disabled body but rather with society. Individuals have rights, human rights, and those rights for those who do not fit into a broad spectrum of normal are violated regularly. I know all too much about this as do others with a disability.
Dreger made me believe change is possible. For instance. she points out that progress made in treating those born with intersex conditions since the 1990s. While this is encouraging, I remain dismayed by the cultural perception of disability and how it seems impervious to significant change. Hence I thought of the Ashley Treatment--a child whose body was radically altered to fit society and its failure to accommodate people with profound cognitive and physical disabilities. I thought of the ADA and how twenty years after its passage access for all people with a disabilities remains a constant battle. I thought of ethicists in medicine who have a penchant for justifying treatments that are at best questionable or worse violate the bodily integrity of the most vulnerable among us. I thought of disability scholars who have largely failed to enhance the civil rights of people with a disability. I thought of disability activist that in spite of great effort are virtually invisible in mainstream news stories. I thought of people at risk--specifically the newborn, elderly, and those with a disability. These are hard times for such people, fearful times I would contend. In the words of Dreger: "In the United States, the values of individualism, self-improvement, free enterprise, and high-tech medicine have combined in the past few decades to create a culture in which one is able--indeed, even expected--to employ medical technologies to alter one's anatomy and make it more socially advantageous".
Dreger's words were echoing in my brain when I read about Brianna Manns. Manns gave birth to conjoined twin boys on March 31, 2010. The boys cannot be separated because they share a single heart and have complicated anatomy. At issue is how much medical intervention is appropriate. Doctors have been clear they do want to see the twin boys suffer. Their mother, Brianna Manns, wants every effort to be made to extend the life of her children. According to Helen Kusi, a neonatalogist, "we empathize with her but as health care providers, knowing what we know, we don't want to see the babies die in an agonizing way. That's where we are not on the same page with her. We haven't given up, but we have to face reality". What prompted this statement was the refusal of the mother to sign a do not resuscitate order. Here we have a collision between two opposing world views. It is my understanding that the mother is deeply religious and thinks there is a reason God made special babies such as those she gave birth to. While I do not know any more than what I read in the news and on line it appears that Manns has been at odds with doctors for sometime. Doctors discussed terminating the pregnancy but Manns refused to do so. Doctors then maintained the twins were not likely to survive birth. Survive they did and Manns and the doctors charged with the care of her children remain at odds.
The above is an extreme case, one that will likely lead to great emotional angst for the mother and health care providers. I am sure medical ethicists will weigh in on what transpires as will many others. I sincerely hope not only have those involved read Dreger's work but have called her in to lend her expertise. To me, this case is but a sign of troubled times for those that do not conform to societal and medical norms. It is my belief that as our economy continues to falter and health care dollars are watched like a hawk all those that do not fit in will be perceived as a problem--an expensive problem that we can ill afford. Hence the media reports about how expensive it is to care for the elderly as they approach the end of their life or how much it costs to keep a person alive per day that is dependent upon a respirator. At no point do we read about the contributions the elderly make to society nor a word about the person that not only survives but thrives using a respirator. What is conveniently ignored are the social barriers to education, personal relationships, and community involvement. Instead, we create institutions to house and separate the unwanted or in the case above convince ourselves we do not want babies to suffer. The fact is society simply refuses to accommodate some bodies. I know all about this as my body is lacking socially and physically--I cannot walk, that is not in question. But my inability to walk should not preclude me from being an accepted member of society. Yet, my very existence in the estimation of many is an odious burden. I have been told point blank by utter strangers that they would "rather be dead than use a wheelchair". How I wonder can one think that something as insignificant as the inability to walk makes me so inferior, not worthy of life itself. I may have a physical deficit but that does not make me inferior to others. Thus I have no interest in changing my body to conform to what others expect. I need not be saved by science or technology but rather expect, demand really, that society accept me for the man I am. Afterall, I am as human as is any person with or without a disability.
Dreger made me believe change is possible. For instance. she points out that progress made in treating those born with intersex conditions since the 1990s. While this is encouraging, I remain dismayed by the cultural perception of disability and how it seems impervious to significant change. Hence I thought of the Ashley Treatment--a child whose body was radically altered to fit society and its failure to accommodate people with profound cognitive and physical disabilities. I thought of the ADA and how twenty years after its passage access for all people with a disabilities remains a constant battle. I thought of ethicists in medicine who have a penchant for justifying treatments that are at best questionable or worse violate the bodily integrity of the most vulnerable among us. I thought of disability scholars who have largely failed to enhance the civil rights of people with a disability. I thought of disability activist that in spite of great effort are virtually invisible in mainstream news stories. I thought of people at risk--specifically the newborn, elderly, and those with a disability. These are hard times for such people, fearful times I would contend. In the words of Dreger: "In the United States, the values of individualism, self-improvement, free enterprise, and high-tech medicine have combined in the past few decades to create a culture in which one is able--indeed, even expected--to employ medical technologies to alter one's anatomy and make it more socially advantageous".
Dreger's words were echoing in my brain when I read about Brianna Manns. Manns gave birth to conjoined twin boys on March 31, 2010. The boys cannot be separated because they share a single heart and have complicated anatomy. At issue is how much medical intervention is appropriate. Doctors have been clear they do want to see the twin boys suffer. Their mother, Brianna Manns, wants every effort to be made to extend the life of her children. According to Helen Kusi, a neonatalogist, "we empathize with her but as health care providers, knowing what we know, we don't want to see the babies die in an agonizing way. That's where we are not on the same page with her. We haven't given up, but we have to face reality". What prompted this statement was the refusal of the mother to sign a do not resuscitate order. Here we have a collision between two opposing world views. It is my understanding that the mother is deeply religious and thinks there is a reason God made special babies such as those she gave birth to. While I do not know any more than what I read in the news and on line it appears that Manns has been at odds with doctors for sometime. Doctors discussed terminating the pregnancy but Manns refused to do so. Doctors then maintained the twins were not likely to survive birth. Survive they did and Manns and the doctors charged with the care of her children remain at odds.
The above is an extreme case, one that will likely lead to great emotional angst for the mother and health care providers. I am sure medical ethicists will weigh in on what transpires as will many others. I sincerely hope not only have those involved read Dreger's work but have called her in to lend her expertise. To me, this case is but a sign of troubled times for those that do not conform to societal and medical norms. It is my belief that as our economy continues to falter and health care dollars are watched like a hawk all those that do not fit in will be perceived as a problem--an expensive problem that we can ill afford. Hence the media reports about how expensive it is to care for the elderly as they approach the end of their life or how much it costs to keep a person alive per day that is dependent upon a respirator. At no point do we read about the contributions the elderly make to society nor a word about the person that not only survives but thrives using a respirator. What is conveniently ignored are the social barriers to education, personal relationships, and community involvement. Instead, we create institutions to house and separate the unwanted or in the case above convince ourselves we do not want babies to suffer. The fact is society simply refuses to accommodate some bodies. I know all about this as my body is lacking socially and physically--I cannot walk, that is not in question. But my inability to walk should not preclude me from being an accepted member of society. Yet, my very existence in the estimation of many is an odious burden. I have been told point blank by utter strangers that they would "rather be dead than use a wheelchair". How I wonder can one think that something as insignificant as the inability to walk makes me so inferior, not worthy of life itself. I may have a physical deficit but that does not make me inferior to others. Thus I have no interest in changing my body to conform to what others expect. I need not be saved by science or technology but rather expect, demand really, that society accept me for the man I am. Afterall, I am as human as is any person with or without a disability.
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