I have a stack of final exams on my desk that must be graded. This is serious work with a firm deadline I always meet. Yet I will do almost anything to avoid grading the exams. I love teaching but not grading. Grading exams is hard work and students are under great pressure to get good grades. I sympathize with students but can only base my assessment of their work based on what they hand in to me. This leads to frustration and, right now, procrastination in the form of this post and a need to fill the gas tank of my car. Yes, I needed gas but I really did not need to go out and fill up the tank this morning. I wanted to avoid my exams, get out in the early morning fresh air, and enjoy a short drive. So there I am pumping my gas when I noticed the blue wheelchair logo on the pump in the bright sunlight. I have not read the little wheelchair logo post in quite some time. However, I do know the law--here I refer to the ADA as it relates to assistance for disabled drivers at self service gas stations. What does the law state? Gas stations have the duty to assist disabled persons at the gas pump. The ADA requires self service stations to provide equal access to their customers. If more than one employee is on duty a gas station must provide refueling assistance to a disabled individual who has a handicapped placard or license plate. Customers with a disability let the service station know they need help by honking twice or signaling an employee. Gas stations may not charge a disabled person for pumping their gas.
I have been driving for over 30 years. Not once have I seen or heard of a disabled person being assisted at a gas station. Like anyone else, I have pumped my own gas on rainy days, in frigid cold, and searing heat. No one has ever asked me if I needed or wanted help. While I have never tried to seek the assistance of a station attendant, I find it hard to imagine this would go over well. Gas stations present many obstacles in terms of access. Bathrooms, aside from often being filthy, are rarely accessible. Ramps to enter the station are often blocked by fire wood in the winter and cases of water in the summer. If one can enter a station the aisles are so narrow they are impossible to navigate. Beer is stacked high and junk food abounds.
While the obstacles at gas stations and an obscure part of the ADA such as assisting disabled gas station customers may seem to be inconsequential, it highlights a larger problem. The ADA is just not taken seriously or poorly understood. Add in the ADA is often interpreted by people who know little about disability nor have an interest in making a business accessible and it is no wonder barriers abound. But it is not just businesses that seek to avoid the ADA. Schools, both public and private, routinely ignore or avoid ADA regulations. I had to shame my son's secondary school into making the auditorium accessible and even when they renovated it did not follow ADA guidelines. The university where I teach is grossly inaccessible and is a SUNY school! My point is that the lack of access at my local has station is symbolic of a much larger problem--the ADA is ignored or, worse, unknown. I hope that with the 20th anniversary of the ADA around the corner this may change. Moreover, it is my hope that the ADA will become known for what it really is: civil rights legislation. While I have great hopes, given the dismal state of the economy and lack of interest, I do not really expect the 20th anniversary of the ADA to resonate with the general public. However, I am planning on having a big party at my home next July to celebrate. While most Americans do not care, I for one I am grateful and proud to know a law like the ADA exists and that we elected legislators who had the wisdom to pen such civil rights legislation.
Friday, May 7, 2010
Monday, May 3, 2010
Is Being An Ordinary Human Possible
It is a gloomy morning and the weather matches my mood. I am not happy and I know why. I feel estranged from society and grossly misunderstood by the average citizen. Indeed, I feel like a cartoon character. I can never win for two popular perceptions of disability exist and dominate cultural discourse. Option one: I am a super cripple able to do amazing things. I am married or divorced, employed, and participate in outdoor activities. Yes, we cripple people can ski, kayak, camp, and go for hikes. For leading an ordinary life we super cripples are put on a pedestal and admired because we have "overcome our disability". Most importantly, we super cripples put all those other lazy crippled people to shame as they surely spend their time feeling sorry for themselves. Option 2: The socially dependent mess. These people lack the character to overcome their disability. They have no job. They live at home with family well past an acceptable age or worse yet are dependent upon the government. The dependent mess has no life, sits around feeling sorry for themselves and have no future. I despise both these simplistic and misleading options.
How and why I wonder are people with no knowledge of disability so stupid. In large part I blame the mainstream media. Sob stories about disability abound. Here I refer to the heart breaking story about an ordinary person that is struck down by a disability and their life is destroyed. The reader counts his or her blessings and moves on with their day. The message however is clear, disability is bad and can run your life. The other extreme reference to disability is one I have learned to detest because I am too often put in this category--the super cripple! There was a long article in the New York Times that took the super cripple to a new and bizarre extreme. The story was a hybrid--the person portrayed, Dayniah Manderson, was a super cripple but doomed by their disability at the same time. Here I am referring to the NYT story "Bent Not Broken" by Kassie Bracken and Erik Olson (April 30) that was accompanied by a ten minute video. By the time I was done reading this story I was livid. Maudlin in the extreme, lines such as "From the time she wakes up until the hour she is lifted into bed, each moment can be a reminder of what does not fit--a spirit that does not fit a body, a body that does not fit a wheelchair, a wheelchair that does not fit a world" were painful to read. Worse yet her friend and doctor, Roberta Shapiro, who "counseled" Manderson and secured life saving surgery for her dramatically states "I couldn't live inside her body".
Deconstructing the NYT story is of no interest to me. I have done this before and it is not worth the effort to do so again. Rather, what I am amazed at are the issues raised and dismissed or utterly ignored in the story. Manderson is a minority within a minority as the presence of women with a disability is unusual. Manderson is also a woman of color from Montego Bay, Jamaica who was incorrectly diagnosed with muscular dystrophy when she was two years old. She moved to the United States in 1995 where she excelled academically. She gradated from New York University with an MA. She is a mother and is currently a teacher at an elementary school. These bare bones facts are about as ordinary as ordinary can be. However, scattered in the story are the following:
Manderson is dropped off at school an hour before he colleagues at a locked handicapped accessible entrance.
She uses Access-a-Ride.
The elevator where she works is often broken.
She often is forced to dehydrate herself at work.
She moved to the USA when a local doctor offered to treat her for "evil spirits".
Her motorized wheelchair cost $35,000.
Golly is she not an amazing woman to overcome all of the above. In a word, no. What Manderson is overcoming is an utter lack of support for the law, civil rights legislation, known as the ADA passed almost 20 years ago. Many of the so called obstacles Manderson encounters are illegal or certainly wrong and were supposed to have been eliminated long ago. At no point does the article mention that Access-a-Ride is on of the worst para-transit systems in the United States. No mention is made of why she must arrive well before her colleagues or at an accessible entrance that is locked. No mention is made of why the elevators are broken or that moving a class is a legally required reasonable accommodation. No mention is made of why her wheelchair costs as much as a car. No mention is made of why she regularly dehydrates herself at work. No mention is made of how she managed to escape institutionalization in Jamaica. No mention is made of how she managed to get into or graduate from New York University. What do we get instead? Drama and more drama and life saving surgery replete with x-rays to accompany the story. A fascinating life that could have been used to highlight its complexity is reduced to a carton image of a woman overcoming her disability. No wonder people do not understand disability and it cultural implications. No wonder people do not think the ADA is civil rights legislation. In the place of real reporting, real information we get simplistic heart warming stories about a super cripple that has overcome her disability. Those ignorant about the social obstacles people with a disability encounter on a daily basis are not discussed. Social progress is not made, stereotypes remain common place, and people with a disability continue to remain the most disenfranchised minority in not just the USA but the world. No wonder I feel estranged from society.
How and why I wonder are people with no knowledge of disability so stupid. In large part I blame the mainstream media. Sob stories about disability abound. Here I refer to the heart breaking story about an ordinary person that is struck down by a disability and their life is destroyed. The reader counts his or her blessings and moves on with their day. The message however is clear, disability is bad and can run your life. The other extreme reference to disability is one I have learned to detest because I am too often put in this category--the super cripple! There was a long article in the New York Times that took the super cripple to a new and bizarre extreme. The story was a hybrid--the person portrayed, Dayniah Manderson, was a super cripple but doomed by their disability at the same time. Here I am referring to the NYT story "Bent Not Broken" by Kassie Bracken and Erik Olson (April 30) that was accompanied by a ten minute video. By the time I was done reading this story I was livid. Maudlin in the extreme, lines such as "From the time she wakes up until the hour she is lifted into bed, each moment can be a reminder of what does not fit--a spirit that does not fit a body, a body that does not fit a wheelchair, a wheelchair that does not fit a world" were painful to read. Worse yet her friend and doctor, Roberta Shapiro, who "counseled" Manderson and secured life saving surgery for her dramatically states "I couldn't live inside her body".
Deconstructing the NYT story is of no interest to me. I have done this before and it is not worth the effort to do so again. Rather, what I am amazed at are the issues raised and dismissed or utterly ignored in the story. Manderson is a minority within a minority as the presence of women with a disability is unusual. Manderson is also a woman of color from Montego Bay, Jamaica who was incorrectly diagnosed with muscular dystrophy when she was two years old. She moved to the United States in 1995 where she excelled academically. She gradated from New York University with an MA. She is a mother and is currently a teacher at an elementary school. These bare bones facts are about as ordinary as ordinary can be. However, scattered in the story are the following:
Manderson is dropped off at school an hour before he colleagues at a locked handicapped accessible entrance.
She uses Access-a-Ride.
The elevator where she works is often broken.
She often is forced to dehydrate herself at work.
She moved to the USA when a local doctor offered to treat her for "evil spirits".
Her motorized wheelchair cost $35,000.
Golly is she not an amazing woman to overcome all of the above. In a word, no. What Manderson is overcoming is an utter lack of support for the law, civil rights legislation, known as the ADA passed almost 20 years ago. Many of the so called obstacles Manderson encounters are illegal or certainly wrong and were supposed to have been eliminated long ago. At no point does the article mention that Access-a-Ride is on of the worst para-transit systems in the United States. No mention is made of why she must arrive well before her colleagues or at an accessible entrance that is locked. No mention is made of why the elevators are broken or that moving a class is a legally required reasonable accommodation. No mention is made of why her wheelchair costs as much as a car. No mention is made of why she regularly dehydrates herself at work. No mention is made of how she managed to escape institutionalization in Jamaica. No mention is made of how she managed to get into or graduate from New York University. What do we get instead? Drama and more drama and life saving surgery replete with x-rays to accompany the story. A fascinating life that could have been used to highlight its complexity is reduced to a carton image of a woman overcoming her disability. No wonder people do not understand disability and it cultural implications. No wonder people do not think the ADA is civil rights legislation. In the place of real reporting, real information we get simplistic heart warming stories about a super cripple that has overcome her disability. Those ignorant about the social obstacles people with a disability encounter on a daily basis are not discussed. Social progress is not made, stereotypes remain common place, and people with a disability continue to remain the most disenfranchised minority in not just the USA but the world. No wonder I feel estranged from society.
Friday, April 30, 2010
Smoothing the Way--How Long Will it Take
A few days ago the New York Times published an odd story about travel for people with disabilities. In "Smoothing the Way" by Tanya Mohn I was amazed she acknowledged that "people with disabilities never have an easy time traveling". However, I was bitterly disappointed by the second part of her sentence--"a rash of recent improvements including more wheelchair taxis and rental vehicles... have made it easier". This assessment is correct. More taxis at airports will transport people with a disability. More rent-a-car companies have cars with hand controls. What is not acknowledged is the quality of these ordinary services. Sure I can get a taxi at any airport. That does not mean the driver will be happy or even make the pretense I am an ordinary passenger. It does not mean he will not try to rip me off via turning on the meter before I enter the car or well after I exit. Similarly, airline personnel routinely consider passengers with a disability to be extra work and are not hesitate to makes this point clear. Rudeness is the norm and I feel as though I have the plague when I fly. If I assert my rights, I am deemed difficult. The fact what I request, pre boarding for instance, is a matter of law and has been for nearly two decades is of no consequence. I am simply a pain in the ass for an overworked employee.
While I could write pages about my dislike for airlines, I have a special ire for car rental companies. When I rent a car I would estimate 50% of the time the vehicle with hand controls is not present. The company does not mater--Hertz, Avis, National, Enterprise all screw up. Each and every time I rent a car with hand controls it is as though it has never been done before. I also go to extremes--I call 48 hours in advance, call the night before, and morning of the rental to confirm the car with hand controls. I get assurances with each call but the car is never there when I need it. One would imagine this is not a complicated request. The only good thing about not having a car ready to go when I arrive is the free upgrade or steep discount for my inconvenience. But I would gladly trade this for a car when desired. In other words, I wish to be treated like an ordinary customer.
Travel has been on my mind as I am just back from the conference in Baltimore. I think the conference went well. It was well attended and I met many people in the health care profession that clearly care about disability. I hope this care and concern will some day filter down to the care people with a disability receive when accessing health care. What amazed me about the trip was how problem free it was--a rarity. The hotel room was accessible and parking quite easy. The conference presented no barriers--in fact the organizers were on top of every access issue imaginable. I was treated with respect from beginning to end. Wow, I wish all my trips went as smoothly. Sadly, I know this is not the norm even though it should be. On the drive home and upon reading the article in the New York Times mentioned above I cannot help but wonder why travel remains so problematic for people with disabilities. Is it a numbers game? Are there too few of us for airlines, hotels, and car companies to care? I think not. The numbers often quoted in the mainstream media indicate people with a disability that travel has increased significantly. What I think is going on is a culture clash--people with a disability are not expected to travel, assert their rights and certainly not be treated equally. Our presence is an afront to others and the travel industry does not respect us as a group. The result is inferior if not bad service and I assure you travel is rarely smooth or trouble free. In fact what struck me the most about my recent trip was the fact it was trouble free. I thus realized I assume trouble will take place whenever I travel. This is my norm. A norm that must change and I would argue we have a long way to travel to make this happen (sorry for the bad pun).
While I could write pages about my dislike for airlines, I have a special ire for car rental companies. When I rent a car I would estimate 50% of the time the vehicle with hand controls is not present. The company does not mater--Hertz, Avis, National, Enterprise all screw up. Each and every time I rent a car with hand controls it is as though it has never been done before. I also go to extremes--I call 48 hours in advance, call the night before, and morning of the rental to confirm the car with hand controls. I get assurances with each call but the car is never there when I need it. One would imagine this is not a complicated request. The only good thing about not having a car ready to go when I arrive is the free upgrade or steep discount for my inconvenience. But I would gladly trade this for a car when desired. In other words, I wish to be treated like an ordinary customer.
Travel has been on my mind as I am just back from the conference in Baltimore. I think the conference went well. It was well attended and I met many people in the health care profession that clearly care about disability. I hope this care and concern will some day filter down to the care people with a disability receive when accessing health care. What amazed me about the trip was how problem free it was--a rarity. The hotel room was accessible and parking quite easy. The conference presented no barriers--in fact the organizers were on top of every access issue imaginable. I was treated with respect from beginning to end. Wow, I wish all my trips went as smoothly. Sadly, I know this is not the norm even though it should be. On the drive home and upon reading the article in the New York Times mentioned above I cannot help but wonder why travel remains so problematic for people with disabilities. Is it a numbers game? Are there too few of us for airlines, hotels, and car companies to care? I think not. The numbers often quoted in the mainstream media indicate people with a disability that travel has increased significantly. What I think is going on is a culture clash--people with a disability are not expected to travel, assert their rights and certainly not be treated equally. Our presence is an afront to others and the travel industry does not respect us as a group. The result is inferior if not bad service and I assure you travel is rarely smooth or trouble free. In fact what struck me the most about my recent trip was the fact it was trouble free. I thus realized I assume trouble will take place whenever I travel. This is my norm. A norm that must change and I would argue we have a long way to travel to make this happen (sorry for the bad pun).
Monday, April 26, 2010
Conference Paper on the Ashley Treatment
On April 28 I will be participating in a conference entitled "Disability, Health Care & Ethics--What Really Matters". I am nervous and excited. I know what to expect when I meet up with anthropologists at such conferences. However, this conference is going to be made up of a diverse audience most of whom work within the realm of the ethics, science and medicine. How the audience will react to my strident position and words as they relate to the Ashley Treatment is a mystery to me. I just hope I make it home in one piece. For more on the conference see Life with a Severely Disabled Child (http://severedisabilitykid.blogspot.com/).
Below is a copy of what I will be presenting:
The Maryland Health Care Ethics Committee Network
And the Law & Health Care Program (L&HCP)
University of Maryland School of Law
Disability, Health Care & Ethics—What Really Matters
Wednesday, April 28, 2010
10:00 a.m.—6:30 p.m
1:00--2:15 p.m. Concurrent Sessions A
Lessons From the Ashley X Case
William J. Peace, PhD
When I heard about the Ashley X case via a disability rights podcast I was outraged. How I wondered could parents and doctors implement such a radical surgical intervention. Two subsequent thoughts went through mind: first, the Americans with Disabilities Act has utterly failed to fundamentally change American’s understanding of disability. The average American is as ignorant today about disability as they were almost twenty years ago when the ADA was passed into law. Second, I was deeply saddened that such a radical treatment was performed on a child with a profound cognitive and physical deficit. This highlighted not only my marginalization from American society but the profound discrimination people with intellectual disabilities currently encounter. Exclusion has remained a constant for “idiots”, “imbeciles”, and “incompetents”. While the words we use has changed significantly since 1900 and the notorious Buck v. Bell Supreme Court decision circa 1927 the deprivation of basic human rights has remained constant (Lombardo 2008). Many states retain laws that deny basic rights to those deemed “mentally incompetent” and even those individuals with adequate support often spend their adult life in poorly supported institutions. In short, I am talking about a group of American citizens, Ashley included, whose civil rights and now their bodily integrity are open to question.
In the last one hundred years many justifications have been used to deny civil rights to people with intellectual disabilities. In much the same way, those that promote the Ashley Treatment or growth attenuation have proposed many reasons for why such a radical intervention is ethically acceptable. The parallels between Buck V Bell and Ashley X are striking to me. They highlight the ethical conundrums involved in allowing or prohibiting the Ashley Treatment. Oliver Wendell Holmes Jr. determined people with intellectual disabilities to be “manifestly unfit” to exercise their rights. For Holmes the core issues were rationality, independence, economic productivity, and morality. For those that lacked the ability to meet these American norms and most importantly did not possess the ability to care for one’s self became lesser citizens. These “lesser citizens” forfeited their civil rights in exchange for care. Those providing care whether it be the state or family held great power. They alone made the decisions that were deemed to be in the best interests of their dependents. This sort of power over another human being is fraught with the potential for abuse and can bring out both the worst and best humanity and medicine has to offer.
I am not suggesting the discrimination people with intellectual disabilities encounter today is the same as what took place in the 1920s (Carey 2009) . My point is that assumptions of incompetence and dependence continue to be used to justify the deprivation of basic human rights for those who are intellectually disabled. Any effective ethics consultation related to the request for the Ashley Treatment must acknowledge that while the discrimination people with an intellectual disability is not as blatant as it once was such individuals are still perceived as somehow different, less human. By extension, then all people with a disability, whether it be Ashley or a person such as myself with a physical disability are at risk and remain one of the few groups of people whom legal discrimination is viewed as appropriate or perhaps socially acceptable.
I hope that my reference to the Buck v Bell case makes ethicist, doctors, and audience members uncomfortable. I have felt discomfort and vulnerable since reading about the Ashley X case. Beyond my personal feelings I think the Ashley Treatment is critically important because two extreme views exist. The doctors in Seattle that initiated the Ashley Treatment, notably Douglas Diekema and Norman Fost, and its proponents firmly believe they are helping one child and potentially many more. In contrast, people such as myself consider the Ashley Treatment morally and ethically unacceptable. Given these polar opposite perspectives, what does an effective ethical consultation require? There is one core issue in my opinion: the sterilization of any child requires judicial review. It is not the place of an ethics committee to determine whether such a course of action is morally justifiable. Moreover, controversial issues such as breast bud removal, the eventual size and weight of Ashley obscure the central issue: the hysterectomy that was performed may have been part of a larger procedure known now as growth attenuation yet the end result was sterilization. Each state has different laws with regard to sterilization many of which are contentious and contradictory. In fact the greatest controversy regarding sterilization pertain to people such as Ashley who are unable to consent. I am not suggesting that sterilization of people with profound cognitive disabilities is wrong—in some cases it is permissible but only after “less intrusive and temporary methods for contraception or control of menstruation are not acceptable alternatives, and procedural safeguards have been implemented to assure a fair decision making process” (Diekema 2003). These are the words of Douglas Diekema, Ashley’s physician and main proponent of the Ashley Treatment.
What ethics committees need to focus on are the facts, foremost among them is that growth attenuation or the Ashley Treatment involves sterilization. Ethics committees cannot direct their attention to any other issue. A quick glance at history will reveal the inherent dangers of overlooking the sordid history of sterilization. For example, in Allan Chase’s The Legacy of Malthus writes that 63,678 people were compulsorily sterilized in America between 1907 and 1964 in the 30 states with such laws (Chase 1977). But there were hundreds of thousands more sterilizations that were nominally voluntary but in reality coerced. Chase quotes federal judge Gerhard Gesell as saying in 1974, in a suit brought on behalf of poor victims of involuntary sterilization, "Over the past few years an estimated 100,000 to 150,000 low-income persons have been sterilized annually by state and federal agencies."
What are the larger implications of the Ashley Treatment? The answer to this question is clear to me: the Ashley Treatment is about more than one girl in Seattle—it is about all people with a disability. We people with a disability are the other, a pervasive and important concept in the social sciences. The other are strangers, outcasts if you will, people who do not belong; they are perceived to be fundamentally different. The other often has fewer legal rights and experience gross violation of their civil rights. Thus at a fundamental level there is an us and them—those with a disability and those without. This is a false dichotomy but is a part of the American social structure and dare I say medical establishment. The degree of disability is not important nor is the type of disability. We people with a perceived disability are simply the other. Given this, I do not consider myself one iota different from Ashley in spite of the great difference in our cognitive ability. In coining the term the Ashley Treatment doctors have not only over reached the bounds of ethics in medicine but sent a shot across the bow of every disabled person in American society. The message is very clear: disabled people are not human—they are profoundly flawed beings and extreme measures will be taken to transform their bodies. Consent is not necessary as the mere presence of people with a disability, particularly those like Ashley with a profound cognitive disability, is inherently unacceptable. Modern science however has come to the rescue and doctors have the technology to save us. The problem with this line of thinking is that it is inherently dehumanizing. Ashley need not be saved, surgically altered any more than me or the people listening in the audience.
Bibliography
Carey, Allison
2009 On the Margins of Citizenship: Intellectual Disability and Civil Rights in Twentieth-Century America. Philadekphia: Temple University Press
Chase, Allan
1977 The Legacy of Malthus: The Social Costs of the New Scientific Racism. N.Y. Knopf.
Diekema, Douglas
2003 “Involuntary Sterilization of Persons with Mental Retardation: An Ethical Analysis”. Mental Retardation and developmental Disabilities Research Review 9:21-26.
Lombardo, Paul A.
2008 Three Generations: No Imbeciles. Baltimore: John Hopkins University Press.
Below is a copy of what I will be presenting:
The Maryland Health Care Ethics Committee Network
And the Law & Health Care Program (L&HCP)
University of Maryland School of Law
Disability, Health Care & Ethics—What Really Matters
Wednesday, April 28, 2010
10:00 a.m.—6:30 p.m
1:00--2:15 p.m. Concurrent Sessions A
Lessons From the Ashley X Case
William J. Peace, PhD
When I heard about the Ashley X case via a disability rights podcast I was outraged. How I wondered could parents and doctors implement such a radical surgical intervention. Two subsequent thoughts went through mind: first, the Americans with Disabilities Act has utterly failed to fundamentally change American’s understanding of disability. The average American is as ignorant today about disability as they were almost twenty years ago when the ADA was passed into law. Second, I was deeply saddened that such a radical treatment was performed on a child with a profound cognitive and physical deficit. This highlighted not only my marginalization from American society but the profound discrimination people with intellectual disabilities currently encounter. Exclusion has remained a constant for “idiots”, “imbeciles”, and “incompetents”. While the words we use has changed significantly since 1900 and the notorious Buck v. Bell Supreme Court decision circa 1927 the deprivation of basic human rights has remained constant (Lombardo 2008). Many states retain laws that deny basic rights to those deemed “mentally incompetent” and even those individuals with adequate support often spend their adult life in poorly supported institutions. In short, I am talking about a group of American citizens, Ashley included, whose civil rights and now their bodily integrity are open to question.
In the last one hundred years many justifications have been used to deny civil rights to people with intellectual disabilities. In much the same way, those that promote the Ashley Treatment or growth attenuation have proposed many reasons for why such a radical intervention is ethically acceptable. The parallels between Buck V Bell and Ashley X are striking to me. They highlight the ethical conundrums involved in allowing or prohibiting the Ashley Treatment. Oliver Wendell Holmes Jr. determined people with intellectual disabilities to be “manifestly unfit” to exercise their rights. For Holmes the core issues were rationality, independence, economic productivity, and morality. For those that lacked the ability to meet these American norms and most importantly did not possess the ability to care for one’s self became lesser citizens. These “lesser citizens” forfeited their civil rights in exchange for care. Those providing care whether it be the state or family held great power. They alone made the decisions that were deemed to be in the best interests of their dependents. This sort of power over another human being is fraught with the potential for abuse and can bring out both the worst and best humanity and medicine has to offer.
I am not suggesting the discrimination people with intellectual disabilities encounter today is the same as what took place in the 1920s (Carey 2009) . My point is that assumptions of incompetence and dependence continue to be used to justify the deprivation of basic human rights for those who are intellectually disabled. Any effective ethics consultation related to the request for the Ashley Treatment must acknowledge that while the discrimination people with an intellectual disability is not as blatant as it once was such individuals are still perceived as somehow different, less human. By extension, then all people with a disability, whether it be Ashley or a person such as myself with a physical disability are at risk and remain one of the few groups of people whom legal discrimination is viewed as appropriate or perhaps socially acceptable.
I hope that my reference to the Buck v Bell case makes ethicist, doctors, and audience members uncomfortable. I have felt discomfort and vulnerable since reading about the Ashley X case. Beyond my personal feelings I think the Ashley Treatment is critically important because two extreme views exist. The doctors in Seattle that initiated the Ashley Treatment, notably Douglas Diekema and Norman Fost, and its proponents firmly believe they are helping one child and potentially many more. In contrast, people such as myself consider the Ashley Treatment morally and ethically unacceptable. Given these polar opposite perspectives, what does an effective ethical consultation require? There is one core issue in my opinion: the sterilization of any child requires judicial review. It is not the place of an ethics committee to determine whether such a course of action is morally justifiable. Moreover, controversial issues such as breast bud removal, the eventual size and weight of Ashley obscure the central issue: the hysterectomy that was performed may have been part of a larger procedure known now as growth attenuation yet the end result was sterilization. Each state has different laws with regard to sterilization many of which are contentious and contradictory. In fact the greatest controversy regarding sterilization pertain to people such as Ashley who are unable to consent. I am not suggesting that sterilization of people with profound cognitive disabilities is wrong—in some cases it is permissible but only after “less intrusive and temporary methods for contraception or control of menstruation are not acceptable alternatives, and procedural safeguards have been implemented to assure a fair decision making process” (Diekema 2003). These are the words of Douglas Diekema, Ashley’s physician and main proponent of the Ashley Treatment.
What ethics committees need to focus on are the facts, foremost among them is that growth attenuation or the Ashley Treatment involves sterilization. Ethics committees cannot direct their attention to any other issue. A quick glance at history will reveal the inherent dangers of overlooking the sordid history of sterilization. For example, in Allan Chase’s The Legacy of Malthus writes that 63,678 people were compulsorily sterilized in America between 1907 and 1964 in the 30 states with such laws (Chase 1977). But there were hundreds of thousands more sterilizations that were nominally voluntary but in reality coerced. Chase quotes federal judge Gerhard Gesell as saying in 1974, in a suit brought on behalf of poor victims of involuntary sterilization, "Over the past few years an estimated 100,000 to 150,000 low-income persons have been sterilized annually by state and federal agencies."
What are the larger implications of the Ashley Treatment? The answer to this question is clear to me: the Ashley Treatment is about more than one girl in Seattle—it is about all people with a disability. We people with a disability are the other, a pervasive and important concept in the social sciences. The other are strangers, outcasts if you will, people who do not belong; they are perceived to be fundamentally different. The other often has fewer legal rights and experience gross violation of their civil rights. Thus at a fundamental level there is an us and them—those with a disability and those without. This is a false dichotomy but is a part of the American social structure and dare I say medical establishment. The degree of disability is not important nor is the type of disability. We people with a perceived disability are simply the other. Given this, I do not consider myself one iota different from Ashley in spite of the great difference in our cognitive ability. In coining the term the Ashley Treatment doctors have not only over reached the bounds of ethics in medicine but sent a shot across the bow of every disabled person in American society. The message is very clear: disabled people are not human—they are profoundly flawed beings and extreme measures will be taken to transform their bodies. Consent is not necessary as the mere presence of people with a disability, particularly those like Ashley with a profound cognitive disability, is inherently unacceptable. Modern science however has come to the rescue and doctors have the technology to save us. The problem with this line of thinking is that it is inherently dehumanizing. Ashley need not be saved, surgically altered any more than me or the people listening in the audience.
Bibliography
Carey, Allison
2009 On the Margins of Citizenship: Intellectual Disability and Civil Rights in Twentieth-Century America. Philadekphia: Temple University Press
Chase, Allan
1977 The Legacy of Malthus: The Social Costs of the New Scientific Racism. N.Y. Knopf.
Diekema, Douglas
2003 “Involuntary Sterilization of Persons with Mental Retardation: An Ethical Analysis”. Mental Retardation and developmental Disabilities Research Review 9:21-26.
Lombardo, Paul A.
2008 Three Generations: No Imbeciles. Baltimore: John Hopkins University Press.
Monday, April 19, 2010
Boy Scouts: The Good, Bad and Ugly
My son has been active in the Boy Scouts of America since first grade. His involvement as well as mine is my ex-wife's fault. She insisted I take our son to a Cub Scout Pack night. I was stunned at that first meeting--it was like stepping backward in time to the 1950s when American society was a much different country. My son, in contrast, was thrilled--"Dad, the Cub Scouts are the coolest, I want to join". Fast forward a decade and not only has my son been consistently active in the Cub Scouts, Boy Scouts, and now Venturing but I too have held a number of volunteer positions in the BSA. I have come away from my experiences with mixed feelings at best. At one extreme is the fact that some of my fondest memories associated with raising my son took place at Cub Scout and Boy Scout outings. Equally positive are the activities he participated in. I also got to meet fine people that, like me, donated their time and energy to the Boy Scouts. But I cannot forget the needless bigotry and ignorance I routinely encountered. My experiences outside of our local pack, troop, and crew, were often overwhelmingly negative. The national entity or professional scouters that run the BSA were uniformly terrible. Disability to them represented trouble; trouble they wanted to avoid at all costs. The best way to do this was to exclude any child or adult that had a disability. To a degree, this filtered down to the council level. Getting basic accommodations was and remains problematic. And when I mean basic accommodations, I am referring to an accessible port-a-potty, a level camping area, assistance carrying camping gear to the group camp site or an accessible cabin. In short, my "needs" were minimal at best but perceived to be an onerous burden.
My experiences, pro and con, came back to me when I was looking at the most recent issue of Scouting Magazine. I usually no more than glimpse at this magazine but one item caught my eye" "Advancement FAQs: Roads Less Traveled, How Scouts with disabilities can earn the Eagle Scout Rank". After reading the brief FAQ it reinforced my belief that what the scouts say and what they do in terms of accommodating children and adults with a disability are two radically different things. The scouts emphasize all with a disability will be accommodated and that the highest rank a scout can earn, Eagle Scout, is possible. The scouts are both correct and wrong in this assessment. Yes, some scouts with a disability have earned the rank of Eagle Scout, a significant accomplishment. But what the scouts do not want to acknowledge is that the path to earning an Eagle Scout Rank is filled with needless obstacles. The same can be said for a parent such as myself--my ability to be an involved parent and volunteer was made needlessly difficult. Access was always a problem and whenever I appeared it was perceived to be singularly unusual--I was constantly told "we never had a parent or scout that used a wheelchair" or "we never thought about access before". These observation were often followed by a "sorry but there is nothing we can do".
So, what exactly does the official entity known as the BSA maintain about scouts with a disability that want to earn the rank of Eagle Scout? A scout with a permanent disability, mental or physical, may request permission to pursue alternate requirements for rank advancement and merit badges. Because all scouts and "cases" are different the BSA has no fixed set of alternate requirements. Who gets to decide if a scout qualifies for alternate requirements? The council advancement committee. This committee determines what standard requirements a scout can meet and suggests detailed alternatives for advancement. The committee must also receive a statement from a licensed health care provider abut the scout and in case of a mental disability an evaluation from a certified educational administrator. Problems abound here. Council advancement committees are made up of volunteers, most if not all of whom know nothing about disability. Getting such committees to agree on anything is never easy but to create alternate requirements based on my experience would be impossible. Add in the letter from a licensed health care provider and statement by a certified health educational administrator and I cannot envision how a scout could navigate the so called Eagle path. Theoretically it is possible but the barriers are significant.
I would like to believe the BSA wants to be inclusive to children and adults with a disability. But everything I have experienced negates the idea as wishful thinking. The sad truth is the BSA is exclusionary to others that are different: for instance gays and atheists. In terms of disability, at a fundamental level disability is seen as a problem. Accommodations can be made but that is subject to choice. The BSA retains the right to pick and choose what accommodations they wish to meet. Hence we are stepping back in time to an era in which people with a disability were perceived to be a charity case. This is exactly how I was made to feel. People with no knowledge or experience with disability decided what was a "reasonable" accommodation. What was reasonable to them rarely seemed reasonable to me. If this sounds like sour grapes I cannot disagree. I had severely limited expectations and only wanted to be included. This sense of being welcomed as a parent with disability was rarely met. At a grass roots level (within the pack, troop or crew), over time my presence was accepted. However, anything that involved council was a problem and if the professional scouters were involved access was a disaster. These are the same people that determine the fate of a scout that wants to earn the rank of Eagle Scout. Good luck to all the scouts out there that wish to earn this distinction. But heed my warning: expect bigotry and ignorance to abound on this path. I may have had it bad as a parent but I have no doubt scout with a disability have far worse experiences.
My experiences, pro and con, came back to me when I was looking at the most recent issue of Scouting Magazine. I usually no more than glimpse at this magazine but one item caught my eye" "Advancement FAQs: Roads Less Traveled, How Scouts with disabilities can earn the Eagle Scout Rank". After reading the brief FAQ it reinforced my belief that what the scouts say and what they do in terms of accommodating children and adults with a disability are two radically different things. The scouts emphasize all with a disability will be accommodated and that the highest rank a scout can earn, Eagle Scout, is possible. The scouts are both correct and wrong in this assessment. Yes, some scouts with a disability have earned the rank of Eagle Scout, a significant accomplishment. But what the scouts do not want to acknowledge is that the path to earning an Eagle Scout Rank is filled with needless obstacles. The same can be said for a parent such as myself--my ability to be an involved parent and volunteer was made needlessly difficult. Access was always a problem and whenever I appeared it was perceived to be singularly unusual--I was constantly told "we never had a parent or scout that used a wheelchair" or "we never thought about access before". These observation were often followed by a "sorry but there is nothing we can do".
So, what exactly does the official entity known as the BSA maintain about scouts with a disability that want to earn the rank of Eagle Scout? A scout with a permanent disability, mental or physical, may request permission to pursue alternate requirements for rank advancement and merit badges. Because all scouts and "cases" are different the BSA has no fixed set of alternate requirements. Who gets to decide if a scout qualifies for alternate requirements? The council advancement committee. This committee determines what standard requirements a scout can meet and suggests detailed alternatives for advancement. The committee must also receive a statement from a licensed health care provider abut the scout and in case of a mental disability an evaluation from a certified educational administrator. Problems abound here. Council advancement committees are made up of volunteers, most if not all of whom know nothing about disability. Getting such committees to agree on anything is never easy but to create alternate requirements based on my experience would be impossible. Add in the letter from a licensed health care provider and statement by a certified health educational administrator and I cannot envision how a scout could navigate the so called Eagle path. Theoretically it is possible but the barriers are significant.
I would like to believe the BSA wants to be inclusive to children and adults with a disability. But everything I have experienced negates the idea as wishful thinking. The sad truth is the BSA is exclusionary to others that are different: for instance gays and atheists. In terms of disability, at a fundamental level disability is seen as a problem. Accommodations can be made but that is subject to choice. The BSA retains the right to pick and choose what accommodations they wish to meet. Hence we are stepping back in time to an era in which people with a disability were perceived to be a charity case. This is exactly how I was made to feel. People with no knowledge or experience with disability decided what was a "reasonable" accommodation. What was reasonable to them rarely seemed reasonable to me. If this sounds like sour grapes I cannot disagree. I had severely limited expectations and only wanted to be included. This sense of being welcomed as a parent with disability was rarely met. At a grass roots level (within the pack, troop or crew), over time my presence was accepted. However, anything that involved council was a problem and if the professional scouters were involved access was a disaster. These are the same people that determine the fate of a scout that wants to earn the rank of Eagle Scout. Good luck to all the scouts out there that wish to earn this distinction. But heed my warning: expect bigotry and ignorance to abound on this path. I may have had it bad as a parent but I have no doubt scout with a disability have far worse experiences.
Wednesday, April 14, 2010
Assisted Suicide: Some Get the Inherent Dangers
One blog I faithfully read is Not Yet Dead Yet. Founded in 1996 I have learned to respect the work of Stephen Drake and Diane Coleman. While I do not always like the tone or tenor of Not Dead Yet advocacy, I never question the factual basis upon which they base their views. I have often found gems on the their blog and yesterday was a perfect example. Last week Not Dead Yet noted that the Connecticut Office of Protection and Advocacy for Persons with Disabilities (OPA) had filed a motion to intervene in the Connecticut assisted suicide case Blick v. Division of Criminal Justice. Not Dead Yet provided a link and long quotes from the affidavit of James D. McGaughey, Executive Director of the Connecticut of the OPA. For those that want to read the entire affidavit please visit Not Dead Yet. I would just like to stress and quote one part of what Mr. McGaughey wrote in large part because it reinforces what I believe are the dangers of disability and assisted suicide.
To quote Mr. McGaughey: "During my service at the Office of Protection and Advocacy for Persons with Disabilities, the agency has represented individuals with significant disabilities who faced the prospect of, or actually experienced discriminatory denial of beneficial, life-sustaining medical treatment. In most such cases physicians or others involved in treatment decisions did not understand or appreciate the prospects of people with disabilities to live good quality lives, and their decisions and recommendations sometimes reflected confusion concerning the distinction between terminal illness and disability. In a number of those cases, despite the fact that the individuals with disabilities were not dying, decisions had been made to institute Do Not Resuscitate orders, to withhold or withdraw nutrition and hydration, to withhold or withdraw medication or to not pursue various beneficial medical procedures. In my experience, people with significant disabilities are at risk of having presumptions about the quality of their lives influence the way medical providers, including physicians, respond to them. "
Presumptions about the quality of life for people with a disability abound and none of them are good or remotely positive. These presumptions are based on ignorance. The result is prejudice is common place and the medical establishment is far from immune from bigotry. I know this for a fact as I have often encountered institutionalized bigotry in the medical setting. This can take many forms from inaccessible examination rooms to attitudinal barriers. I never cease to be shocked when this takes place but know it pales in comparison to what others with a disability have experienced. Not Dead Yet will write about some of these cases and experiences in the days to follow. I for one look forward to what promises to be grim but important reading.
To quote Mr. McGaughey: "During my service at the Office of Protection and Advocacy for Persons with Disabilities, the agency has represented individuals with significant disabilities who faced the prospect of, or actually experienced discriminatory denial of beneficial, life-sustaining medical treatment. In most such cases physicians or others involved in treatment decisions did not understand or appreciate the prospects of people with disabilities to live good quality lives, and their decisions and recommendations sometimes reflected confusion concerning the distinction between terminal illness and disability. In a number of those cases, despite the fact that the individuals with disabilities were not dying, decisions had been made to institute Do Not Resuscitate orders, to withhold or withdraw nutrition and hydration, to withhold or withdraw medication or to not pursue various beneficial medical procedures. In my experience, people with significant disabilities are at risk of having presumptions about the quality of their lives influence the way medical providers, including physicians, respond to them. "
Presumptions about the quality of life for people with a disability abound and none of them are good or remotely positive. These presumptions are based on ignorance. The result is prejudice is common place and the medical establishment is far from immune from bigotry. I know this for a fact as I have often encountered institutionalized bigotry in the medical setting. This can take many forms from inaccessible examination rooms to attitudinal barriers. I never cease to be shocked when this takes place but know it pales in comparison to what others with a disability have experienced. Not Dead Yet will write about some of these cases and experiences in the days to follow. I for one look forward to what promises to be grim but important reading.
Friday, April 9, 2010
Fear of the Medical Industrial Complex
In spite of the newly enacted health care reform bill I believe our health care system remains hopelessly fragmented. In my estimation most Americans figure into one of two groups: those with and those without adequate health insurance. Exceptions exist, myself for example. I have health insurance, hospitalization only, that does not do me or my wallet much good when I get sick. Yet I consider myself lucky to have inadequate insurance because most paralyzed people I know have no insurance. The reasons for this is simple: health insurance companies consider people with a disability to be a poor or costly investment. The stigma and obstacles accessing health care for people with a disability does not end with insurance. Like it or not, within a medical setting people with a disability, especially those that use a wheelchair, symbolically represent failure or the limits of medical science. Doctors, nurses, therapists and all those dedicated to healing people do not like to be reminded of such limitations or failures. This belief is not directly addressed and festers below the surface of many interactions I have had. The negative perception of disability also affects the sort of health care people with a disability receive. When one thinks about serious or life threatening illness most people assume everything will be done to save their life and every possible procedure will be performed. For many this is a given. I do not share this belief. I have a very different set of worries: I worry I will not be treated. I worry I will be allowed to die--to end my suffering. The fact is my life is not valued--it is thought by many to be some a tragedy and that I have endured and suffered. If seriously ill why pull out all or any of the stops for such a person. This is not science, supposedly objective, but opinion--a deadly opinion. To me this proof that medical science deems some lives worth living while others lack value.
Surely this bad cripple is being paranoid. Sorry but I think not. Why just the other day I was out to lunch and the person I was eating with went to the rest room. The person at the table next to where I was sitting leaned over and handed me a business card. He stated "if you ever want to pray for a cure and end your suffering give me call". While this encounter was not an ordinary experience it highlights the fact many people think death is preferable to disability. I have been told countless times "I could never accept using a wheelchair" or "I would rather die than be paralyzed". The prevalence of this belief is far more common than I would like to think much less accept. This thought has been at the forefront of my mind in part because of my encounter at lunch mentioned above. But I was inspired to write about my concerns after reading an interview with Michael de Ridder, head of the emergency ward at Berlin Hospital and author of a new book on dying in Spiegal. In Ridder's estimation death has become complex, people are needlessly suffering, and patients should be allowed to die with greater dignity. Ridder states that a doctors primary mandate is to heal but "to allow someone to die well is equally important in terms of ethics". In Ridder's estimation doctors are not well equipped to handle the ethical conundrums they often face when dealing with end of life issues. Thus Ridder believes we need a concept for the treatment of "hopeless cases". What I wonder is exactly a "hopeless case"? According to Ridder decisions on hopeless case can be on empirical grounds. That may make Ridder feel like a highly ethical being but such logic scares me. Worse yet, is an example Ridder provides. Over a year and a half Ridder got to know a patient very well. The person in question, a woman, was "a brilliant scientist, who since an accident two years ago, has been paralyzed from the head down and is completely without feeling. She wanted the artificial respiration shut off but she was refused, as this is clearly illegal. She was literally reproached for being the only patient in the ward who didn't want to live. She is breathing on her own again. But she says that she can't touch anyone anymore, she can't do her work anymore, she can't even lift a pebble. She doesn't want to live like this. Mind you, it's a life that wouldn't even exist without advanced medical procedures and it's one that she can no longer end on her own. In that situation, I can't exactly order that the woman should be turned so-and-so-many times a day, that she be fed and that she should lie there for another 40 years, just because we have the technological know-how and want to satisfy our ethical standards."
Ridder may think he is basing his views on empirical observations but in my estimation a value judgement is being made. The life of the woman discussed is not worth living. The fact that the overwhelming majority of people faced with the same situation choose to live is conveniently ignored. Compassion and care has been perverted. Ethics has been stood on its head in the guise of physician assisted suicide. At issue is not how to live but how to die. And this line of thought that is sweeping health care here and abroad scares my crippled ass. What happens to the next paralyzed person who comes under the care of Ridder or another physician that holds similar thoughts. Will such a patient be treated equally? In a word, no. Will I be treated equally when I enter a hospital with a serious illness? Sadly, I think not. I know I will have to fight for my rights and assert myself. Now this is an ethical violation worth discussing. It is also against that pesky law known as the ADA.
Surely this bad cripple is being paranoid. Sorry but I think not. Why just the other day I was out to lunch and the person I was eating with went to the rest room. The person at the table next to where I was sitting leaned over and handed me a business card. He stated "if you ever want to pray for a cure and end your suffering give me call". While this encounter was not an ordinary experience it highlights the fact many people think death is preferable to disability. I have been told countless times "I could never accept using a wheelchair" or "I would rather die than be paralyzed". The prevalence of this belief is far more common than I would like to think much less accept. This thought has been at the forefront of my mind in part because of my encounter at lunch mentioned above. But I was inspired to write about my concerns after reading an interview with Michael de Ridder, head of the emergency ward at Berlin Hospital and author of a new book on dying in Spiegal. In Ridder's estimation death has become complex, people are needlessly suffering, and patients should be allowed to die with greater dignity. Ridder states that a doctors primary mandate is to heal but "to allow someone to die well is equally important in terms of ethics". In Ridder's estimation doctors are not well equipped to handle the ethical conundrums they often face when dealing with end of life issues. Thus Ridder believes we need a concept for the treatment of "hopeless cases". What I wonder is exactly a "hopeless case"? According to Ridder decisions on hopeless case can be on empirical grounds. That may make Ridder feel like a highly ethical being but such logic scares me. Worse yet, is an example Ridder provides. Over a year and a half Ridder got to know a patient very well. The person in question, a woman, was "a brilliant scientist, who since an accident two years ago, has been paralyzed from the head down and is completely without feeling. She wanted the artificial respiration shut off but she was refused, as this is clearly illegal. She was literally reproached for being the only patient in the ward who didn't want to live. She is breathing on her own again. But she says that she can't touch anyone anymore, she can't do her work anymore, she can't even lift a pebble. She doesn't want to live like this. Mind you, it's a life that wouldn't even exist without advanced medical procedures and it's one that she can no longer end on her own. In that situation, I can't exactly order that the woman should be turned so-and-so-many times a day, that she be fed and that she should lie there for another 40 years, just because we have the technological know-how and want to satisfy our ethical standards."
Ridder may think he is basing his views on empirical observations but in my estimation a value judgement is being made. The life of the woman discussed is not worth living. The fact that the overwhelming majority of people faced with the same situation choose to live is conveniently ignored. Compassion and care has been perverted. Ethics has been stood on its head in the guise of physician assisted suicide. At issue is not how to live but how to die. And this line of thought that is sweeping health care here and abroad scares my crippled ass. What happens to the next paralyzed person who comes under the care of Ridder or another physician that holds similar thoughts. Will such a patient be treated equally? In a word, no. Will I be treated equally when I enter a hospital with a serious illness? Sadly, I think not. I know I will have to fight for my rights and assert myself. Now this is an ethical violation worth discussing. It is also against that pesky law known as the ADA.
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