At no point in my life is the discrimination against people with a disability more evident than when I use mass transportation. Buses, trains, and planes all present significant barriers. Legislation designed to enforce the rights of people with disabilities date back to the late 1970s and early 1980s yet access barriers remain the norm. In terms of mass transportation I believe the airline industry is by far the most discriminatory. The aviation industry has a long history of blatant violations against passengers with disabilities. Year after year major American airlines such as Northwest, Delta and United are fined for violating the civil rights of passengers with a disability. No commercial airline has been spared from vehement complaints levied by people with disabilities. Based on my experience people with disabilities, especially those such as myself that use a wheelchair, have good reason to complain. In fact when I travel by plane regardless of the carrier I feel as though I am going to war.
When I leave my home for the airport I assume I will encounter needless architectural barriers and blatant discrimination by airline employees. This is the norm and it starts in parking lots where handicapped parking is often full, curb cuts totally absent, blocked or located in the wrong place. When I get to the terminal elevators are often locked or located in obscure locations. Finding an airline employee or security guard that knows how to unlock or find a key to turn on an elevator is always an adventure. These problems arise at old and new airports. Thus by the time I get through security and to the gate I am already pissed off. There I will be greeted by a stressed out overburdened gate agent that considers me more work. I need a gate claim for my wheelchair and seat assignment as far forward as humanly possible. The FAA stipulates that on certain planes people with a disability such as mine are supposed to have access to the bulk head seat provided it is not an emergency row. This FAA regulation means little to the gate agent because many airlines charge extra for bulkhead seats or assign them to their best customers. Again, my request for a bulk head seat is simply more work, a hassle for the gate agent who will need to deal with another angry customer who was bumped from an existing seat assignment.
People that use a wheelchair and travel often know the above saga and litany of complaints are never easy to deal with. They are also the tip of an iceberg in terms of what can go wrong when one travels and uses a wheelchair. Those unfamiliar with disability related problems when traveling are always quick to point out that air travel for any person is not easy. This assessment is correct. Planes are normally full and passengers are squeezed in like sardines and herded like cattle. But passengers that have a disability cannot be herded like cattle and must follow a different path. This "special" path is never convenient and too often discriminatory. A case in point is the security line. Those that use a wheelchair cannot go through the metal detector for obvious reasons. The norm for people such as myself who uses a wheelchair is to be physically patted down by a TSA guard of the same sex. The thoroughness of this pat down ranges from cursory to a very serious search of one's body.
The scrutiny people that use a wheelchair are subjected to is about to get much more intense. The reason for this is that the TSA posted a story on its blog about a recent case in Los Angeles. Apparently a man that was using a wheelchair was caught trying to smuggle cocaine in two packages taped to his body. The TSA has always maintained that wheelchairs and other adaptive devices make smuggling easier. This case worries me because I think the TSA will use it as an excuse to ramp up its screening of all people with a disability. Elderly travelers have bitterly complained about excessive screening as have those that use a prosthesis or have an artificial joint. The TSA sees the case in question as a great victory, proof that anyone is a possible terrorist threat. The TSA blog points out that in Columbia circa 2005 a man that used a wheelchair was allowed to bypass metal detectors and was not patted down. This man and his son tried to hijack a plane with two hand grenades.
So, beware of the TSA. Be forewarned all old ladies and men, wheelchair users, and anyone else that cannot navigate their way through an airport metal detector. You may be a terrorist and as such you will be searched. You will be subject to a close physical inspection and patted down whether you like it or not. Please don't misconstrue my words: I am not opposed to security or the TSA. Indeed, I think most TSA guards are courteous and professional but understandably firm. They have a job to do and I think the TSA needs to be aware that by the time a person with a physical disability gets to the security line they have already encountered needless barriers. The TSA need not add to the pressure associated with traveling by singling out people that use adaptive devices. The airline industry has already made travel difficult enough, the TSA does not need tp add yet another barrier.
Wednesday, February 11, 2009
Saturday, February 7, 2009
Ableism: SNL, Paterson and Bad Humor
The first time SNL lampooned David Paterson I was not amused. Well, actually I was more than a little mad. Go ahead and make fun of Paterson and every other elected official. I love this sort comedy and always have. SNL is the master of this sort of political humor and has experienced a resurgence of sorts thanks in larger part to Tina Fay's hysterical impersonation of Sarah Palin. If I can find the humor in Fay as Palin why am I mad at when Fred Armisen lampoons Paterson? SNL skewered Palin for what she said and her political views. SNL can go right ahead and do the same to Paterson and they sure do have plenty of material for comedic fodder. But SNL does not want to stop at making fun of Paterson's political gaffs. No, they have relied on cheap, antiquated, and bigoted humor that makes fun of the fact Paterson is blind. These gags are offensive and many have stated that SNL crossed the line. I agree. Groups such as the National Federation for the Blind and the National Coalition for Disability Rights have been particularly critical.
Last night when I was out watching my son perform in a play SNL came up during the intermission and I was asked what I thought of the Paterson skits. My response was emphatic: the skits were not funny. They were an insult to all people with disabilities. My friends thought I was humorless, a prototypical academic unable to connect with the world in which they interact. Worse yet, I could not take a joke. In reply I asked would they laugh at jokes from the 1930s that portrayed black people as less than human? What about anti-Semetic jokes about concentration camps. Would they find this humorous? I think not. My comments ended the discussion quickly. No one knew how to reply.
So, here we are almost 20 years after the ADA was passed and the average American does not have a clue as to the bigotry and ignorance people with disabilities encounter. This lack of knowledge surrounds us and is especially evident in newspapers. Even in articles that are intended to be supportive of Paterson and critical of SNL miss the mark. For instance, in the New York Times yesterday there was an article by Clyde Haberman entitled "A Governor's Sense of Humor put to the Test". Haberman considers the SNL skit "creepy". He quotes disability activists who make good points and clearly finds much fault in the SNL skits. While this is great, some of Haberman's opening comments are as antiquated as the SNL skit. For instance, Haberman writes that "across the years he [Paterson] triumphed over affliction" and that his "ascension in Albany last year was a fluke" that "gave the sightless new reason to take heart". These sort of comments are as bad if not worse than the SNL skit. Paterson has repeatedly stated that the color of his skin created fewer social barriers than did the fact he was blind. Paterson consistently mentions the fact that the unemployment rate for people who are blind is 70% Moreover, Paterson's rise to power was no fluke. He is a competent, a gifted speaker, and been active in politics for decades. He intends to run for governor and in spite of a few rough patches (like the Senate seat/Caroline Kennedy debacle) has handled himself with great dignity.
In the weeks and months to come I hope to witness a more nuanced view of the politics of disability. This has already started via commercials that attack Paterson that were paid for by state health workers' union and the association of hospitals. The commercial features a blind man sitting in a wheelchair wearing sun glasses that asks "Why are you doing this to me?" Paterson sees nothing wrong with these ads nor has he ever complained about the content of SNL skits that poked fun of his views as governor or his well chronicled personal indiscretions. All this goes with being governor of New York. Paterson knows this as does every other governor in the country. Thus I am not worried about Paterson as he can fend for himself. But I do worry about the impact bigoted humor has on the general public and that is where SNL crossed the line. I get this as does Paterson and disability rights activists. I wish everyone understood and until they do bigoted humor will still appear to be, well, funny, when it is anything but.
Last night when I was out watching my son perform in a play SNL came up during the intermission and I was asked what I thought of the Paterson skits. My response was emphatic: the skits were not funny. They were an insult to all people with disabilities. My friends thought I was humorless, a prototypical academic unable to connect with the world in which they interact. Worse yet, I could not take a joke. In reply I asked would they laugh at jokes from the 1930s that portrayed black people as less than human? What about anti-Semetic jokes about concentration camps. Would they find this humorous? I think not. My comments ended the discussion quickly. No one knew how to reply.
So, here we are almost 20 years after the ADA was passed and the average American does not have a clue as to the bigotry and ignorance people with disabilities encounter. This lack of knowledge surrounds us and is especially evident in newspapers. Even in articles that are intended to be supportive of Paterson and critical of SNL miss the mark. For instance, in the New York Times yesterday there was an article by Clyde Haberman entitled "A Governor's Sense of Humor put to the Test". Haberman considers the SNL skit "creepy". He quotes disability activists who make good points and clearly finds much fault in the SNL skits. While this is great, some of Haberman's opening comments are as antiquated as the SNL skit. For instance, Haberman writes that "across the years he [Paterson] triumphed over affliction" and that his "ascension in Albany last year was a fluke" that "gave the sightless new reason to take heart". These sort of comments are as bad if not worse than the SNL skit. Paterson has repeatedly stated that the color of his skin created fewer social barriers than did the fact he was blind. Paterson consistently mentions the fact that the unemployment rate for people who are blind is 70% Moreover, Paterson's rise to power was no fluke. He is a competent, a gifted speaker, and been active in politics for decades. He intends to run for governor and in spite of a few rough patches (like the Senate seat/Caroline Kennedy debacle) has handled himself with great dignity.
In the weeks and months to come I hope to witness a more nuanced view of the politics of disability. This has already started via commercials that attack Paterson that were paid for by state health workers' union and the association of hospitals. The commercial features a blind man sitting in a wheelchair wearing sun glasses that asks "Why are you doing this to me?" Paterson sees nothing wrong with these ads nor has he ever complained about the content of SNL skits that poked fun of his views as governor or his well chronicled personal indiscretions. All this goes with being governor of New York. Paterson knows this as does every other governor in the country. Thus I am not worried about Paterson as he can fend for himself. But I do worry about the impact bigoted humor has on the general public and that is where SNL crossed the line. I get this as does Paterson and disability rights activists. I wish everyone understood and until they do bigoted humor will still appear to be, well, funny, when it is anything but.
Thursday, February 5, 2009
Framing the Debate: Assisted Suicide and Disability
It is frigid in New York. When I woke up it was 4 f. and I measure this sort of cold by the creeks and cranks that materialize in my wheelchair when the temperature dips near zero. Since it is too cold to spend much time outdoors I have been doing a lot of reading. Last night I finished Edwin Black's searing War Against the Weak, one of the best books I have ever read about the Eugenics movement in the United States. This morning I read too much about California's Terminal Patients' Right to Know End-of-Life Options Act that was signed into law recently. My reading choices have made me cranky. The assisted death movement has gained tremendous momentum in the last year and I am deeply worried about the implications of recent legal changes in Washington, Montana and California. When I expressed these reservations to a friend they thought I was being reactionary. "Come on", this person said, "you live in the burbs and have nothing to worry about. Hospitals and doctors would never treat you poorly." This assessment is wrong and indicates why the assisted suicide movement has been so successful.
At first glance assisted suicide makes sense. Surely people should have the personal autonomy to decide when their life is not worth living. Terminally ill people should not needlessly suffer when death is inevitable. This seemingly logical position is fraught with error. Terminally ill people rarely take advantage of assisted suicide and substantial confusion exists with regard to exactly who is and is not terminally ill. Life is far more complex and in this regard I often think of the work of Susan Sontag who wrote about her experience with breast cancer. In Illness as a Metaphor she wrote:
Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick...I want to describe, not what it is really like to emigrate to the kingdom of the ill and live there, but the punitive or sentimental fantasies concocted about that situation... My point is that illness is not a metaphor, and that the most truthful way of regarding illness--and the healthiest way of being ill--is one most purified of, most resistant to, metaphoric thinking. Yet is is hardly possible to take up one's residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped.
Like it or not, doctors, nurses, health aides, administrators, EMTs and the myriad of people associated with what we call the health care system are human. Mistakes are made every day in every hospital in the country and I doubt that will ever change. People that work in hospitals often hold firmly entrenched views and too many rely on preconceived notions that may or may not be accurate. Again, this will not change because we are all too human and prone to error. I know a lot about preconceived ideas because I never cease to be amazed by the overwhelmingly negative perception of disability. In my daily life this is a major inconvenience and source of aggravation. In a hospital setting such negative assumptions about disability are simply dangerous. In part, this is why I can identify with not just other groups of people who have been disenfranchised but those who have extended hospital admissions.
It seems reasonable for health care professionals to inform people who are terminally ill about end of life options available to them. We Americans love full disclosure about as much as we love to sue the pants off one another. What is conveniently ignored is just how debilitating it is to be hospitalized for an extended period of time. When you then factor in age, disability, and recognition that one's life is nearing an end depression is a logical and perfectly sane response. So let me ask what happens when you are disabled, depressed, ill and then encounter a well-meaning person that thinks life with a profound disability is not worth living. Afterall no one wants to be paralyzed and use a wheelchair. Paralyzed people cannot have children, marry, hold a job, and lead a rich and rewarding life. Why even if a disabled person survives they are likely to end up in a nursing home. Who wants that sort life? This leads me to ask is a disabled person really going to be fully informed? Will such full disclosure push such a person over the edge and crave death instead of life? Will a psychological consult and treatment for depression be stressed or will death be seen as a preferable course of action? This is not the sort of personal autonomy I think most have in mind when they think of assisted suicide.
What terminally ill people need is care and compassion. What disabled people need is equality. I do not see how the new California law AB2747 helps anyone except those that want to see assisted suicide become increasingly common. The answer to the needs of the terminally ill and the equal rights of disabled people are not being met by any law that makes death appear to be a valid medical option. This is just too easy, seductive in it simplicity and deadly. What is needed is a system designed to ameliorate the disorientation and social isolation associated with long term hospitalization. I am merely more vulnerable and aware of this having had been hospitalized for prolonged periods of time. So for those that think assisted suicide is reasonable, I suggest a little reading and more thought is required. I am confident the vast majority of people willing to do this will agree life is indeed sweet and worth living. Whether one is disabled or terminally ill is not relevant to this debate, this just makes us more vulnerable to misguided law makers and medical practitioners.
At first glance assisted suicide makes sense. Surely people should have the personal autonomy to decide when their life is not worth living. Terminally ill people should not needlessly suffer when death is inevitable. This seemingly logical position is fraught with error. Terminally ill people rarely take advantage of assisted suicide and substantial confusion exists with regard to exactly who is and is not terminally ill. Life is far more complex and in this regard I often think of the work of Susan Sontag who wrote about her experience with breast cancer. In Illness as a Metaphor she wrote:
Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick...I want to describe, not what it is really like to emigrate to the kingdom of the ill and live there, but the punitive or sentimental fantasies concocted about that situation... My point is that illness is not a metaphor, and that the most truthful way of regarding illness--and the healthiest way of being ill--is one most purified of, most resistant to, metaphoric thinking. Yet is is hardly possible to take up one's residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped.
Like it or not, doctors, nurses, health aides, administrators, EMTs and the myriad of people associated with what we call the health care system are human. Mistakes are made every day in every hospital in the country and I doubt that will ever change. People that work in hospitals often hold firmly entrenched views and too many rely on preconceived notions that may or may not be accurate. Again, this will not change because we are all too human and prone to error. I know a lot about preconceived ideas because I never cease to be amazed by the overwhelmingly negative perception of disability. In my daily life this is a major inconvenience and source of aggravation. In a hospital setting such negative assumptions about disability are simply dangerous. In part, this is why I can identify with not just other groups of people who have been disenfranchised but those who have extended hospital admissions.
It seems reasonable for health care professionals to inform people who are terminally ill about end of life options available to them. We Americans love full disclosure about as much as we love to sue the pants off one another. What is conveniently ignored is just how debilitating it is to be hospitalized for an extended period of time. When you then factor in age, disability, and recognition that one's life is nearing an end depression is a logical and perfectly sane response. So let me ask what happens when you are disabled, depressed, ill and then encounter a well-meaning person that thinks life with a profound disability is not worth living. Afterall no one wants to be paralyzed and use a wheelchair. Paralyzed people cannot have children, marry, hold a job, and lead a rich and rewarding life. Why even if a disabled person survives they are likely to end up in a nursing home. Who wants that sort life? This leads me to ask is a disabled person really going to be fully informed? Will such full disclosure push such a person over the edge and crave death instead of life? Will a psychological consult and treatment for depression be stressed or will death be seen as a preferable course of action? This is not the sort of personal autonomy I think most have in mind when they think of assisted suicide.
What terminally ill people need is care and compassion. What disabled people need is equality. I do not see how the new California law AB2747 helps anyone except those that want to see assisted suicide become increasingly common. The answer to the needs of the terminally ill and the equal rights of disabled people are not being met by any law that makes death appear to be a valid medical option. This is just too easy, seductive in it simplicity and deadly. What is needed is a system designed to ameliorate the disorientation and social isolation associated with long term hospitalization. I am merely more vulnerable and aware of this having had been hospitalized for prolonged periods of time. So for those that think assisted suicide is reasonable, I suggest a little reading and more thought is required. I am confident the vast majority of people willing to do this will agree life is indeed sweet and worth living. Whether one is disabled or terminally ill is not relevant to this debate, this just makes us more vulnerable to misguided law makers and medical practitioners.
Wednesday, February 4, 2009
Ashley X: Intrigue and Ethics Collide
It has been more than two years since Ashley X, the so called Pillow Angel, was thrust into the national spot light by her parents. In 2007 and 2008 hundreds of articles were written about what the press dubbed the Ashley Treatment. This controversial case has generated violent reactions and two factions exist: those that support the parents decision to attenuate their daughter's growth and surgically remove her breast buds and uterus. In contrast, disability activists and civil rights groups are staunchly opposed to growth attenuation and the bundle of surgical procedures performed on Ashley X.
Since I first read about Ashley X I have consistently hoped common ground could be found between those for and those against what I will refer to as the Ashley Treatment. I am staunchly opposed the Ashley Treatment but I am not a doctor and I have been and remain open to why some doctors think the Ashley Treatment should be a viable option for children with profound cognitive disabilities. I want to know how an institution such as Seattle Children's Hospital can ethically and medically justify why growth attenuation and surgery is necessary for what I consider a social problem--the failure to recognize the civil rights and bodily integrity of children with profound cognitive deficits. Thus I have followed the Ashley X case as closely as one can and in the last month I have spent a great deal of time reading what has been published in medical journals, disability rights magazines and blogs, and the mainstream media. I have also contacted key figures on both sides of this debate albeit with mixed results. Before I get to my own views let me provide readers with references to material that I think is thought provoking. I leave it up to readers to delve into these references.
1. The Seattle Children's Hospital website, specifically the Treuman Center for Bioethics. Under events see the Ethical and Policy Implications of Limiting Growth in Children with Severe Disabilities, May 16, 2007. The hospital has archived this event and one can see the entire symposium. The archived tape is fascinating as one gets a sense of the people and personalities involved.
2. Emi Koyama has reviewed the 2007 symposium and the most recent symposium held in January 2009 on her personal blog (eminism.org/blog) and at the website What Sorts of People. Emi is the director of Intersex Iniative, a Portland Oregon national advocacy organization for people born with intersex conditions. Her notes are very good and insightful. I agree with much of what she wrote but not all.
3. What Sorts of People website. Dick Sobsey at the John Dossetor Health Ethics Centre at the University of Alberta has blogged about Ashley X and has a series entitled Thinking in Action: The Modern Pursuit of Human Perfection. See What Sorts of People entry on January 24, 2009 for specific links to his writings on this subject.
4. The Hastings Center Report for January February 2009, V. 39, #1. A subscription is required to read anything more than abstracts of the work of Susan Gilbert, Alicia Quellette, Douglas J, Opel and Benjamin Wilfond, Erik Parens, Gregory E. Kaebnick, and Alice Dreger. As a group, these papers present a nuanced view of the issues involved in not just the Ashley X case but the conundrums that doctors encounter when dealing with ethical issues in medicine.
5. I have saved the most controversial reference for last. Mysteries and Questions Surrounding the Ashley Case. This blog maintained by the anonymous hua hima is explosive, the information it contains subject to intense debate. I do not agree with a good bit of what is written but it has forced me to think about the Ashley X case in a way I never would have done.
In spite of the fact two years has passed, I think more questions than answers have resulted from the Ashley X case. All attempts to settle the debate associated with the Ashley Treatment have failed. Here I include the 2007 Washington Protection & Advocacy System (WPAS) publicly released report and the two symposiums held by Seattle Children's Hospital. Based on my reading and thoughts I cannot get past two fundamental issues.
First, I am deeply troubled by the actions of Ashley X parents as well as the possible influence their social and financial position played a part in the decision making process. In the 2007 symposium several doctors commented that when they heard about what was being suggested they were appalled but after Ashley X father met with the hospital ethics committee virtually all involved changed their mind. Like Alice Dreger who was a presenter at the 2007 symposium, I think this sort of radical change in thinking is inherently problematic. In thinking about this I do not question that the doctors involved were trying to anything more than help Ashley X. However, I don't think they spent much if any time thinking about the larger implications of what they were going do. Surely having an influential and perhaps powerful and wealthy parent determined to get what he wanted influenced them. In part this is why I am so uncomfortable with how some involved have in the words of Erik Parens "made an uneasy peace with cases where a competent person, after a process of truly informed decision making, either refuses or requests a medical intervention to cope with a social problem". Parens acknowledges the situation is far more complicated when a child like Ashley X is involved and that "there is no good alternative to respecting parents' truly informed decisions. They are better situated than anyone else to grasp what is best for their child and family". Well, I for one beg to differ for a host of reasons foremost among them that this viewpoint ignores the legal conclusions reached by the WPAS.
Second, and most importantly, I cannot overlook the fact only one group of people are being considered for growth attenuation and the bundle of procedures called the Ashley Treatment-cognitively and physically disable children. What does this say about American society? To quote the words of my friend Steve Kuusisto at Planet of the Blind "its safe to say that the developmentally disabled are at the bottom of the caste system" a sad truth that any reasonable person cannot dispute. It is not uncommon for physicians to politely refuse to care for adults with cognitive issues and the medical treatment of such adults often fall onto the shoulders of their pediatricians. Thus it is fair to say to people with cognitive disabilities are stigmatized by within the medical establishment. It is exactly this group of professional that seeks to justify surgical intervention and the use of high dose estrogen to attenuate the growth of the children that are stigmatized in society and within medicine. The rationale used by Ashley X parents was dubious at best and whether it was explicit or not bigotry against cognitively disabled adults played a role. If you doubt this, since when do physicians surgically alter children to make caring for them easier? The answer to this is obvious--it is not done--unless of course one has the power, prestige, and drive to push doctors to do something they must come to an uneasy peace with. In short, I think the doctors and ethics committee took the easy way out--they refused to make a hard decision that would have upset two parents that love their daughter thereby proving that they were human and as prone to error as any other person.
To return to my original question--can common ground be found? I think this is possible. First, doctors can admit they made a mistake and acknowledge that the so called Ashley Treatment is at minimum ethically questionable and was not medically necessary. Second, disability rights activists can tone down the rhetoric and use past abuses of disabled people as a means of educating doctors and the general public about why disability rights and civil rights are identical issues. We people with disabilities must get other people to understand one can be disabled and proud, that disability is part of our human identity.
Since I first read about Ashley X I have consistently hoped common ground could be found between those for and those against what I will refer to as the Ashley Treatment. I am staunchly opposed the Ashley Treatment but I am not a doctor and I have been and remain open to why some doctors think the Ashley Treatment should be a viable option for children with profound cognitive disabilities. I want to know how an institution such as Seattle Children's Hospital can ethically and medically justify why growth attenuation and surgery is necessary for what I consider a social problem--the failure to recognize the civil rights and bodily integrity of children with profound cognitive deficits. Thus I have followed the Ashley X case as closely as one can and in the last month I have spent a great deal of time reading what has been published in medical journals, disability rights magazines and blogs, and the mainstream media. I have also contacted key figures on both sides of this debate albeit with mixed results. Before I get to my own views let me provide readers with references to material that I think is thought provoking. I leave it up to readers to delve into these references.
1. The Seattle Children's Hospital website, specifically the Treuman Center for Bioethics. Under events see the Ethical and Policy Implications of Limiting Growth in Children with Severe Disabilities, May 16, 2007. The hospital has archived this event and one can see the entire symposium. The archived tape is fascinating as one gets a sense of the people and personalities involved.
2. Emi Koyama has reviewed the 2007 symposium and the most recent symposium held in January 2009 on her personal blog (eminism.org/blog) and at the website What Sorts of People. Emi is the director of Intersex Iniative, a Portland Oregon national advocacy organization for people born with intersex conditions. Her notes are very good and insightful. I agree with much of what she wrote but not all.
3. What Sorts of People website. Dick Sobsey at the John Dossetor Health Ethics Centre at the University of Alberta has blogged about Ashley X and has a series entitled Thinking in Action: The Modern Pursuit of Human Perfection. See What Sorts of People entry on January 24, 2009 for specific links to his writings on this subject.
4. The Hastings Center Report for January February 2009, V. 39, #1. A subscription is required to read anything more than abstracts of the work of Susan Gilbert, Alicia Quellette, Douglas J, Opel and Benjamin Wilfond, Erik Parens, Gregory E. Kaebnick, and Alice Dreger. As a group, these papers present a nuanced view of the issues involved in not just the Ashley X case but the conundrums that doctors encounter when dealing with ethical issues in medicine.
5. I have saved the most controversial reference for last. Mysteries and Questions Surrounding the Ashley Case. This blog maintained by the anonymous hua hima is explosive, the information it contains subject to intense debate. I do not agree with a good bit of what is written but it has forced me to think about the Ashley X case in a way I never would have done.
In spite of the fact two years has passed, I think more questions than answers have resulted from the Ashley X case. All attempts to settle the debate associated with the Ashley Treatment have failed. Here I include the 2007 Washington Protection & Advocacy System (WPAS) publicly released report and the two symposiums held by Seattle Children's Hospital. Based on my reading and thoughts I cannot get past two fundamental issues.
First, I am deeply troubled by the actions of Ashley X parents as well as the possible influence their social and financial position played a part in the decision making process. In the 2007 symposium several doctors commented that when they heard about what was being suggested they were appalled but after Ashley X father met with the hospital ethics committee virtually all involved changed their mind. Like Alice Dreger who was a presenter at the 2007 symposium, I think this sort of radical change in thinking is inherently problematic. In thinking about this I do not question that the doctors involved were trying to anything more than help Ashley X. However, I don't think they spent much if any time thinking about the larger implications of what they were going do. Surely having an influential and perhaps powerful and wealthy parent determined to get what he wanted influenced them. In part this is why I am so uncomfortable with how some involved have in the words of Erik Parens "made an uneasy peace with cases where a competent person, after a process of truly informed decision making, either refuses or requests a medical intervention to cope with a social problem". Parens acknowledges the situation is far more complicated when a child like Ashley X is involved and that "there is no good alternative to respecting parents' truly informed decisions. They are better situated than anyone else to grasp what is best for their child and family". Well, I for one beg to differ for a host of reasons foremost among them that this viewpoint ignores the legal conclusions reached by the WPAS.
Second, and most importantly, I cannot overlook the fact only one group of people are being considered for growth attenuation and the bundle of procedures called the Ashley Treatment-cognitively and physically disable children. What does this say about American society? To quote the words of my friend Steve Kuusisto at Planet of the Blind "its safe to say that the developmentally disabled are at the bottom of the caste system" a sad truth that any reasonable person cannot dispute. It is not uncommon for physicians to politely refuse to care for adults with cognitive issues and the medical treatment of such adults often fall onto the shoulders of their pediatricians. Thus it is fair to say to people with cognitive disabilities are stigmatized by within the medical establishment. It is exactly this group of professional that seeks to justify surgical intervention and the use of high dose estrogen to attenuate the growth of the children that are stigmatized in society and within medicine. The rationale used by Ashley X parents was dubious at best and whether it was explicit or not bigotry against cognitively disabled adults played a role. If you doubt this, since when do physicians surgically alter children to make caring for them easier? The answer to this is obvious--it is not done--unless of course one has the power, prestige, and drive to push doctors to do something they must come to an uneasy peace with. In short, I think the doctors and ethics committee took the easy way out--they refused to make a hard decision that would have upset two parents that love their daughter thereby proving that they were human and as prone to error as any other person.
To return to my original question--can common ground be found? I think this is possible. First, doctors can admit they made a mistake and acknowledge that the so called Ashley Treatment is at minimum ethically questionable and was not medically necessary. Second, disability rights activists can tone down the rhetoric and use past abuses of disabled people as a means of educating doctors and the general public about why disability rights and civil rights are identical issues. We people with disabilities must get other people to understand one can be disabled and proud, that disability is part of our human identity.
Tuesday, February 3, 2009
Assisted Suicide: Misconceptions Abound
Yesterday, February 2, Steve Drake at Not Yet Dead wrote a reaction to an article about assisted suicide that appeared in the New Statesman. The article subject to debate was written by Victoria Brignell whose writing is usually thought provoking. Her article "Assisted Suicide" was surprising to me because she appears to accept many of the misconceptions associated with assisted suicide. I need not repeat Steve Drake's astute observations made on his blog about what Brignell got wrong foremost among them quality of life issues and personal autonomy.
What I want to address is the questions Brignell posed with regard to assisted suicide and social change. Brignell points out that social practices evolve quickly and wonders "Could we reach a point where it is regarded as normal for a tetraplegic [quadriplegia] person to commit suicide? And as the population ages and pressure on social care services grow, could the authorities regard legalising assisted death for severely disabled people as a convenient means of reducing the demand on an increasingly tight care budget? It seems unlikely such a dystopian vision will turn into reality in the near future". Brignell's assessment may be correct in the UK but I think we have already arrived at this dystopian vision in the United States and elsewhere.
A thriving business of death exists in the Netherlands. Dignitas, the controversial suicide clinic, is seeking to expand its market in spite of the fact it is under investigation for illegally profiting from deaths it has facilitated. Oregon and Washington have assisted suicide laws in place. New Hampshire is seeking to rewrite its laws to facilitate assisted suicide under the guise of redefining what a terminal illness is. Multiple studies have demonstrated beyond a shadow of doubt that the people that seek out assisted suicide are not terminally ill. But this is not what one reads in the newspapers and is a fact that assisted suicide activists avoid discussing. The result is that the average person is stunned or at least I hope they are when they learn about Daniel James parents taking their son to Dignitas to commit suicide. Paralysis is something I know a lot about having been paralyzed for over 30 years. If I have learned one thing, it is that it takes time, family support, and interactions with other people that have a disability before one realizes that paralysis is nothing more than a forced change in the direction one's life will take. What is much harder to accept is the social stigma associated with paralysis and the significant expense associated with using a wheelchair. This is another thing I know far too much about and I consider myself lucky to have been paralyzed in 1978 and not 2008. The world I knew in 1978 was simple. When I was paralyzed newly disabled people had lengthy rehabilitation stays. In retrospect I am not sure it was medically necessary to spend months and months in a rehab facility. What I learned in those months had little to do with my medical care. Instead I learned that I had entered a rabbit hole like Alice in Wonderland. The world as I knew walking was a very different place now that I used a wheelchair. My life, my civil rights no longer had the same value they once did. I was suddenly a quasi human and considered my self lucky to be alive. I heard whispers and comments about how my quality of life and expectations must now be limited. I heard about others who were in some ways better off than me--I was told this directly. You see back then high level quadriplegics were not perceived to be worth treating and allowed to die. My parents forcefully rejected these ideas. They did this with vigor, anger and love. Their position was highly unusual at the time and I learned how to assert my rights within days of being paralyzed.
Fast forward 30 years and a new reality exists. The love my parents showed me has morphed into people like Daniel James parents. They loved their son. They knew he was, to use their words, a second class citizen. Because they loved him so much they gave him access to Dignitas where he would take his own life. This is not what my parents had in mind when they talked and fought for access. No one lauds people like my parents who like many others that support the life of people with disabilities. In fact, such people are often characterized as difficult and selfish because wheelchair access is thought to be something we should get to choose to do. In contrast, the reaction to James' parents is overwhelming. They are paragons of virtue, selfless parents that put the wishes of their child before their own. This is exactly why assisted suicide is such a threat to the most vulnerable people: elderly, physically and cognitively disabled people. A judgment is being made, one in which the lives of some people is perceived to be less valuable. Sure lets make assisted suicide legal for the terminally ill. But are not all humans terminal? Exactly who is terminally ill? How is this determined and do the definitions differ. They sure do and everyone knows stories about a person that was told they had six months to live and are still alive and well years later. Thus we need to provide support and compassion to those that are vulnerable, those whose life is viewed as somehow less. This effort is what makes life and humans so unique. In the name of compassion we are killing people young and old alike in the Netherlands and in the states of Washington and Oregon. This is not compassion I learned about through my parents. What is needed is not assisted suicide but appropriate social services for people like Daniel James and his parents. This is not too much to ask but it is costly in terms of time and resources when compared with assisted suicide. I for one would not be here had my parents not chosen to support me in those first hard months of paralysis and spurred me on. This is the sort of parental love and social action I hope to pass on to my son and is a life lesson all should learn. Simply put, assisted suicide is a cheap solution to a much larger problem that can be solved if we value the solution.
What I want to address is the questions Brignell posed with regard to assisted suicide and social change. Brignell points out that social practices evolve quickly and wonders "Could we reach a point where it is regarded as normal for a tetraplegic [quadriplegia] person to commit suicide? And as the population ages and pressure on social care services grow, could the authorities regard legalising assisted death for severely disabled people as a convenient means of reducing the demand on an increasingly tight care budget? It seems unlikely such a dystopian vision will turn into reality in the near future". Brignell's assessment may be correct in the UK but I think we have already arrived at this dystopian vision in the United States and elsewhere.
A thriving business of death exists in the Netherlands. Dignitas, the controversial suicide clinic, is seeking to expand its market in spite of the fact it is under investigation for illegally profiting from deaths it has facilitated. Oregon and Washington have assisted suicide laws in place. New Hampshire is seeking to rewrite its laws to facilitate assisted suicide under the guise of redefining what a terminal illness is. Multiple studies have demonstrated beyond a shadow of doubt that the people that seek out assisted suicide are not terminally ill. But this is not what one reads in the newspapers and is a fact that assisted suicide activists avoid discussing. The result is that the average person is stunned or at least I hope they are when they learn about Daniel James parents taking their son to Dignitas to commit suicide. Paralysis is something I know a lot about having been paralyzed for over 30 years. If I have learned one thing, it is that it takes time, family support, and interactions with other people that have a disability before one realizes that paralysis is nothing more than a forced change in the direction one's life will take. What is much harder to accept is the social stigma associated with paralysis and the significant expense associated with using a wheelchair. This is another thing I know far too much about and I consider myself lucky to have been paralyzed in 1978 and not 2008. The world I knew in 1978 was simple. When I was paralyzed newly disabled people had lengthy rehabilitation stays. In retrospect I am not sure it was medically necessary to spend months and months in a rehab facility. What I learned in those months had little to do with my medical care. Instead I learned that I had entered a rabbit hole like Alice in Wonderland. The world as I knew walking was a very different place now that I used a wheelchair. My life, my civil rights no longer had the same value they once did. I was suddenly a quasi human and considered my self lucky to be alive. I heard whispers and comments about how my quality of life and expectations must now be limited. I heard about others who were in some ways better off than me--I was told this directly. You see back then high level quadriplegics were not perceived to be worth treating and allowed to die. My parents forcefully rejected these ideas. They did this with vigor, anger and love. Their position was highly unusual at the time and I learned how to assert my rights within days of being paralyzed.
Fast forward 30 years and a new reality exists. The love my parents showed me has morphed into people like Daniel James parents. They loved their son. They knew he was, to use their words, a second class citizen. Because they loved him so much they gave him access to Dignitas where he would take his own life. This is not what my parents had in mind when they talked and fought for access. No one lauds people like my parents who like many others that support the life of people with disabilities. In fact, such people are often characterized as difficult and selfish because wheelchair access is thought to be something we should get to choose to do. In contrast, the reaction to James' parents is overwhelming. They are paragons of virtue, selfless parents that put the wishes of their child before their own. This is exactly why assisted suicide is such a threat to the most vulnerable people: elderly, physically and cognitively disabled people. A judgment is being made, one in which the lives of some people is perceived to be less valuable. Sure lets make assisted suicide legal for the terminally ill. But are not all humans terminal? Exactly who is terminally ill? How is this determined and do the definitions differ. They sure do and everyone knows stories about a person that was told they had six months to live and are still alive and well years later. Thus we need to provide support and compassion to those that are vulnerable, those whose life is viewed as somehow less. This effort is what makes life and humans so unique. In the name of compassion we are killing people young and old alike in the Netherlands and in the states of Washington and Oregon. This is not compassion I learned about through my parents. What is needed is not assisted suicide but appropriate social services for people like Daniel James and his parents. This is not too much to ask but it is costly in terms of time and resources when compared with assisted suicide. I for one would not be here had my parents not chosen to support me in those first hard months of paralysis and spurred me on. This is the sort of parental love and social action I hope to pass on to my son and is a life lesson all should learn. Simply put, assisted suicide is a cheap solution to a much larger problem that can be solved if we value the solution.
Friday, January 30, 2009
Ashley Treatment Symposium
Yesterday I read an account of a symposium held in Seattle that dealt with the Ashley Treatment or what doctors like to call growth attenuation. The account I read was written by Emi Koyama, director of the Intersex Initative based in Portland and appeared on the website What Sorts of People. I was deeply concerned by what Emi wrote because it appears that the working group created to study the controversy surrounding the Ashley Treatment is akin to a steamroller designed to pave the way for growth attenuation. I may certainly be wrong as my knowledge of what took place at the symposium is limited to what Emi wrote. I also know that Adrienne Asch, a prominent disability studies scholar, is a member of the working group and find it hard to believe she would acquiesce to such an approach. I have been in touch with Benjamin Wilfond, a pediatrician and ethicist at the University of Washington who informs me that the symposium was taped and will be made available next week. I encourage all those with an interest in disability rights to watch what took place in Seattle when it becomes available. I will post a link when possible.
Two things struck me when I read Emi's assessment of what the Working Group has concluded. First, most members of the working group believe that growth attenuation is morally and ethically acceptable if the parents of profoundly disabled children request it. While it is possible that growth attenuation in rare cases may be ethically acceptable, the implications of this treatment and circumstances under which it is permitted are troubling. This leads me to wonder just how profoundly disabled a child must be? Are any other children aside from those with a profound cognitive disability going to be considered for such treatment? If not, what does this say about the value we place on the lives of those that have a profound cognitive disability? These are certainly important questions that must be answered. Second, I cannot help but think that the answer to enhancing the life of children with profound disabilities and their families is never going to be found stunting the growth of a child and removing body parts as was done to Ashley X. To me, the problem is largely social. We as a society must value all life and treat one and all equally. This is the ideal we must attempt to live up to. I do not care how robust informed consent is, surgery and growth attenuation does not seem like the appropriate solution. It is, for the lack of better words, simply the wrong thing to do.
My concerns are echoed by others including Emi who concluded her assessment of the symposium by writng:
I fear the social and political implications of the mainstream adaptation of growth attenuation as an ordinary part of contemporary society. I fear that what may be utility-maximizing on an individual level may, in aggregate, exacerbate the social climate where bodies, especially our crippled and queer bodies, are shaped and sculpted for the sake of social convenience and comfort. I fear that people with disabilities would be further pressured to reduce the “burden” they “impose” on the rest of the economy, and I fear that Working Group has already began going down the slippery slope, as they blur the eligibility criteria.
This conclusion is indeed a cause for concern. And I wonder if it is enough to stop doctors from attenuating the growth of children.
Two things struck me when I read Emi's assessment of what the Working Group has concluded. First, most members of the working group believe that growth attenuation is morally and ethically acceptable if the parents of profoundly disabled children request it. While it is possible that growth attenuation in rare cases may be ethically acceptable, the implications of this treatment and circumstances under which it is permitted are troubling. This leads me to wonder just how profoundly disabled a child must be? Are any other children aside from those with a profound cognitive disability going to be considered for such treatment? If not, what does this say about the value we place on the lives of those that have a profound cognitive disability? These are certainly important questions that must be answered. Second, I cannot help but think that the answer to enhancing the life of children with profound disabilities and their families is never going to be found stunting the growth of a child and removing body parts as was done to Ashley X. To me, the problem is largely social. We as a society must value all life and treat one and all equally. This is the ideal we must attempt to live up to. I do not care how robust informed consent is, surgery and growth attenuation does not seem like the appropriate solution. It is, for the lack of better words, simply the wrong thing to do.
My concerns are echoed by others including Emi who concluded her assessment of the symposium by writng:
I fear the social and political implications of the mainstream adaptation of growth attenuation as an ordinary part of contemporary society. I fear that what may be utility-maximizing on an individual level may, in aggregate, exacerbate the social climate where bodies, especially our crippled and queer bodies, are shaped and sculpted for the sake of social convenience and comfort. I fear that people with disabilities would be further pressured to reduce the “burden” they “impose” on the rest of the economy, and I fear that Working Group has already began going down the slippery slope, as they blur the eligibility criteria.
This conclusion is indeed a cause for concern. And I wonder if it is enough to stop doctors from attenuating the growth of children.
Thursday, January 29, 2009
Dangerous People
I just read a great three part column in the NewStatesMan by Victoria Brignell. Brignell writes a regular feature entitled "Crip's Column". I have read Brignell's columns once a while but am not a regular reader. I was very impressed with her three most recent three articles that "gives an account of the three most dangerous--yes dangerous--disabled people of all time". Her first two choices were what one would expect. Joseph Goebbels, Hitler's Minister of Propaganda, came in third. Second place went to Wilhelm II, Kaiser of Germany from 1888 who played a major role in World War I and contributed to the deaths of about 6 to 8 million people. The man that came in first was Thomas Midgley. This selection stumped me. Why was Midgeley chosen #1. He was a chemist that invented leaded gasoline. After this invention he worked on cooling system in fridges. Apparently the first fridges had chemicals that were flammable and lethal if they leaked inside the fridge. Midgely invented chlorofluorocarbons or CFCs. In the 1970s it was discovered these CFCs were destroying the crucial ozone layer and are now banned.
While I think Midgely is an unfair choice, the idea of who was the most dangerous disabled person was an interesting idea. Brignell, notes, and I agree, "bad" people are often more interesting than "good" people. Yet, I prefer to think about all those unknown disabled people that have enhanced the quality of my life. I wish these people, i.e. a man such as Edward Roberts, were well-known. Everyone knows FDR was disabled and far too many people remember Christopher Reeve. Both these men were anti-heroes to me. FDR was a complicated ambitious man that hid his disability to further his political career and quest for power. Reeve was so focused (or self absorbed) in his quest for a cure to spinal cord injury he distanced himself from other disabled people and in so doing set back disability rights by more than decade. In short, I want to know more about all those faceless and unknown men and women that advanced disability rights that do not appear in history books. I want to know what they thought and wonder how hard their lives may have been. Part of my wonderment stems from Obama's inaugural speech in which he mentioned segregation was common sixty years ago. This has in turn led me to wonder what will the life of disabled people be like in sixty years? Will access be common? Will stigma still be attached to physical and cognitive disabilities?
While I think Midgely is an unfair choice, the idea of who was the most dangerous disabled person was an interesting idea. Brignell, notes, and I agree, "bad" people are often more interesting than "good" people. Yet, I prefer to think about all those unknown disabled people that have enhanced the quality of my life. I wish these people, i.e. a man such as Edward Roberts, were well-known. Everyone knows FDR was disabled and far too many people remember Christopher Reeve. Both these men were anti-heroes to me. FDR was a complicated ambitious man that hid his disability to further his political career and quest for power. Reeve was so focused (or self absorbed) in his quest for a cure to spinal cord injury he distanced himself from other disabled people and in so doing set back disability rights by more than decade. In short, I want to know more about all those faceless and unknown men and women that advanced disability rights that do not appear in history books. I want to know what they thought and wonder how hard their lives may have been. Part of my wonderment stems from Obama's inaugural speech in which he mentioned segregation was common sixty years ago. This has in turn led me to wonder what will the life of disabled people be like in sixty years? Will access be common? Will stigma still be attached to physical and cognitive disabilities?
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