In Diekema and Fost article, "Ashley Revisited: A Response to Critics", the authors seek to address 25 distinct and substantive ethical arguments that contend the Ashley Treatment is unethical. I was one of the critics supposedly engaged and summarily dismissed. This bothers me but not because I strenuously object to what was done to Ashley. I cannot get this article out my head because there is no effort on the part of Diekema and Fost to really engage their critics. This is frustrating in the extreme. The entire tone of their article is dismissive and to date I have refrained from objecting to how they framed what I wrote in my 2007 article, "Protest from a Bad Cripple", published by Counter Punch. I recently came across a quote from Diekema that has inspired me to directly address what they refer to as "Objection 12 You are playing God".
I did indeed write that Diekema and his deceased colleague, D. Gunther, were caught "playing God". In reply Diekema and Fost argue there are several problems with this argument. First, "if playing God refers to intervening with nature's or God's plan than all of medicine involves playing God". Second, "if we play God in offering certain interventions we also play God when we decide not to intervene". Third, "if God is responsible for Ashley's condition then he is also responsible for creating those with the ability to alter her condition".
Frankly, the reference to "playing God" was a throw away line meant to emphasize a point. And what was the point I was trying to get across? I will quote my next sentence, one that appeared in the second paragraph where I suspect Diekema and Fost stopped reading: "The Ashley Treatment affects not just one girl in Seattle but all people—those with and without a disability. Doctors have established a precedent with Ashley—it is ethically and socially acceptable to mutilate the bodies of disabled people. What Ashley and her doctors have failed to grasp is that all disabled people share a common bond."
In retrospect I could have used a word other than "mutilate" but at the time I wrote the article I was furious. Then, as now, I considered the Ashley Treatment to be ethically questionable at best. My views have not changed appreciably. But to suggest that in some way I object to the Ashley Treatment due to the presence or absence of God is grossly misleading. Even if Diekema and Fost object to what I wrote they could at least direct their comments to substantive issues I raised. For instance, here is paragraph worth delving into:
"In choosing this course of action I consider the parents to be modern day Frankensteins or a perverse Modern Prometheus as Shelley’s 1818 classic novel was subtitled. In coining the term the Ashley Treatment and Pillow Angel 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 and extreme measures will be taken to transform their bodies. Consent is not necessary as the mere presence of disabled people, particularly those like Ashley with a profound mental disability, is inherently unacceptable. Modern science however has come to the rescue and doctors have the technology and know how to prevent her from becoming Frankenstein--a developmentally disabled adult."
To their credit Diekema and Fost may have understood my point as they wrote "this argument is trying to convey the sense that decisions of this kind are arrogant". Yes, arrogant is a word that I think nicely fits Diekema and in particular Fost. They are arrogant in a way that gives doctors a bad reputation. Apparently decisions that led to the Ashley Treatment can "easily be made in humility". They suggest a "theological lens through which to view decisions like those made on behalf of Ashley is the notion of stewardship". Humility is about the last word I would associate Diekema and Fost with. But the notion of "stewardship" is likely closer to the truth. It is possible Diekema and Fost consider themselves stewards--stewards of the less fortunate. People like Ashley that don't talk back. How convenient for them. What they apparently don't like is when those they theoretically "steward", people like me, talk back. Let me be clear: they are the experts when it comes to caring for the human body. In contrast, my expertise lies in the cultural construction of disability and it ramifications. Ashley is impacted by her disability as am I. Yes, my cognitive ability is not impaired but that does not mean the bias, stigma, and social isolation I experience is any different from what Ashley and her family encounter. There are social solutions to this that Ashley's family and her doctors do not want to consider. This thought echoes a recent comment made by N. Tan ad I. Brassington in their article "Agency, Duties, and the Ashley Treatment" published in the Journal of Medical ethics (November 2009): "In a sense the wider Ashley Treatment-taking into account that it also involved a hysterectomy, appendectomy and breast bud removal to protect against problems of as yet unknown severity that might not appear anyway—might represent less of an attempt to meet the challenges of Ashley’s condition than an attempt not to have to meet them. At the very least, it is not obvious that the Ashley treatment was the only or even the best response to the challenge of caring for her. Again, it is not clear that it would be acceptable to deal with most patients in this way: so, again, we might want to know whether and what different rules apply here".
What indeed are the rules that apply here? If the Ashley Treatment would not be considered for a so called normal child why are they socially and medically acceptable for Ashley? This is a discussion worth entering into, one Diekema and Fost have avoided via quotes taken out of context. But I suspect as Ashley's humble "stewards" they need not discuss such matters with a pesky crippled scholar such as myself. This is unfortunate as we people with a disability have much to say and share a lot in common with Ashley. She may lack the agency to understand such a debate but it does affect her life as well as mine. I wish Diekema and Fost were willing to listen an engage in this debate.
Thursday, January 28, 2010
Tuesday, January 26, 2010
Ashley Treatment and the Parental Update
Ashley X parents have updated their blog. I know this because I have read the reactions at two sites: Mysteries and Questions Surrounding the Ashley Case (also posted at What Sorts of People) and Life with a Severely Disabled Child. I urge people to read these two reactions to the parental update. I am not surprised by what Ashley's parents have written. However, I am distressed by their continued salesmanship for such an ethically questionable "treatment". There is not doubt the parents think they have the answer for not only their daughter but all other so called "pillow angels". This term remains creepy years later and does nothing but divert attention from the meaty issues involved in the Ashley Treatment or what doctors involved now call growth attenuation.
I remain adamantly opposed to the Ashley Treatment. I would like to believe I am open minded on the subject. I keep reading, and hoping the major players involved, Douglas Diekema and Norman Fost among others will actually engage in a productive dialogue with those critical of the Ashley Treatment. To date, this has not happened in large part because, like Ashley's parents, they know they have the one and only answer to treating children with profound physical and cognitive disabilities. Critical views are read and dismissed. There is no real effort to engage in a nuanced debate and disability rights activists such as myself are quoted out of context or characterized as being driven by a political agenda. Ashley's parents views are even more strident. While I may disagree with people such as Diekema and Fost nor are my concerns regarding the ethics involved allayed by their work at least they make the pretense of engaging with others. Ashley's parents in contrast are not content with attenuating the growth of their child. They are now akin to the used car salesmen of growth attenuation. I have tried to be restrained in my criticism of Ashley's parents but the latest update to their blog, January 13 third anniversary, was disheartening and biased in the extreme. Ashley's parents raise six bulleted points:
1. Ashley has a significant scoliosis, a curve of 56 degrees that has been stable for the last 14 months. If her scoliosis gets worse, to 75 degrees, surgery to straighten her spine and protect her organs will be required. The lack of progression of her scoliosis has lead her parents to wonder if growth attenuation has slowed its development. This is pure speculation. Scoliosis treatment has changed radically in the last four decades. As one who spent years in braces and eventually had scoliosis surgery I am well aware much of what was done to me decades ago could be considered experimental. Science has advanced as has the treatment of scoliosis but there is by no means a definitive course of treatment. To suggest growth attenuation slows the progression of scoliosis is misleading if not irresponsible.
2. Ashley's parents report that a dozen parents from all over the world have contacted them and reported their children (boys and girls) have had the Ashley Treatment. No country or countries of origin is identified. The parents also maintain that some hospitals have provided treatment while others have not. They refer to a case where the hospital ethics committee approved the treatment but hospital officials declined citing public relations concerns. These statement are dubious. For instance, they make a point to mention that both boys and girls have received the Ashley Treatment. To the best of my knowledge, no doctor, including Diekema, has suggested growth attenuation was a viable option for males. As for for hospital administrators declining to perform the Ashley Treatment because of adverse public relations seems misleading. I suspect the truth is that it is legally difficult to sterilize a minor. The laws in this regard are quite strict (not that they helped Ashley). Moreover, if the Ashley Case was looked at as setting a precedent lawyers would surely be aware of the added safeguards agreed to by the hospital and WPAS.
3. The parents refer to a 2008 panel on growth attenuation at a pediatric conference held in Hawaii. For more on this see the Mysteries Surrounding the Ashley Case website. The parents state most people attending this conference and panel in particular were in favor of growth attenuation. This may or may not be true. The parents were not present nor was I. They seem to rely on the private email from an unnamed physician present. It is worth pointing out here that the panelists included David B Allen, Douglas Diekema, Norman Fost, and Michal Kappy. All four have written and are outspoken proponents of the Ashley Treatment. These men can hardly be considered an unbiased source.
4. According to the parents, at the 2009 Treuman Katz Center for Pediatric Bioethics Diekema stated that the ethics committee at two major children hospitals have investigated growth attenuation and concluded there was no ethical reasons why the treatment could not be performed. If this is true, why did Diekema not identify the hospitals by name? This could only lend more credence to his position. Is it possible he exaggerated to make a point? Is this claim true?
5. The parents refer to an article in Pediatrics entitled "Growth Attenuation Therapy" noting that two pediatric endocrinologists and two bioethicists are in favor of the Ashley Treatment. This is correct and misleading at the same time. The people they are referring to are none other than Allen, Diekema, Fost and Kappy. The same men who were in Hawaii to present their findings.
6. The parents refer to an article in the American Journal of Bioethics, "Ashley Revisted", by Diekema and Fost that I have already critiqued on my blog. This paper is dreadful and utterly failed to do what it set out to do--engage critics of the Ashley Treatment. What the parents do not mention is the devastating rejoinders that accompanied the AJOB article. As is the custom for AJOB, critics had a chance to reply to the target article. Of the nine people that replied, I would consider eight sharply critical. The authors of these critiques are a diverse group and their comments worth serious consideration.
I did not expect Ashley's parents to suddenly be balanced when they updated their blog. But their rigorous and unrelenting sales job for growth attenuation is hard to understand. They had their proverbial fifteen minutes of fame and were on Larry King. What more do they want? Such updates come across badly, as though they are slapping themselves on the back for a job well done. What the parents have done is make some inroads among four men--Allen, Diekema, Fost and Kappy. All their references in medical journals refer to these men alone. No mention is made of a single critic. Hundreds of "supportive" and private emails are referred to on their blog yet not a single critic is identified or worthy of passing reference. One possible explanation for this is the fact the parents accept without question a medical model of disability. That is their daughter's problem is a physical and cognitive deficit. This is of course correct but the solution to the issues need not be met with a radical surgical solution. Doctors under a medical model of disability are the "experts" and this is true provided this expertise is limited to the human body. When it comes to the social ramifications of disability I have a far greater understanding than most people, including Ashley's doctors. I have spent much of my adult life thinking about disability and its meaning inside and outside of a hospital. I do not mean to dismiss the profound consequences of Ashley's disabilities but rather know that many of the issues she and her parents will encounter have well established solutions. They appear to me to not like these solutions and have instead distanced themselves from the very people who could provide answers to the dilemmas they will encounter. In short, Ashley's parents and their most recent update reveals they are hopelessly misguided. This is sad, a social failure if you will, and one I hope will not delude other parents into making a comparable mistake.
I remain adamantly opposed to the Ashley Treatment. I would like to believe I am open minded on the subject. I keep reading, and hoping the major players involved, Douglas Diekema and Norman Fost among others will actually engage in a productive dialogue with those critical of the Ashley Treatment. To date, this has not happened in large part because, like Ashley's parents, they know they have the one and only answer to treating children with profound physical and cognitive disabilities. Critical views are read and dismissed. There is no real effort to engage in a nuanced debate and disability rights activists such as myself are quoted out of context or characterized as being driven by a political agenda. Ashley's parents views are even more strident. While I may disagree with people such as Diekema and Fost nor are my concerns regarding the ethics involved allayed by their work at least they make the pretense of engaging with others. Ashley's parents in contrast are not content with attenuating the growth of their child. They are now akin to the used car salesmen of growth attenuation. I have tried to be restrained in my criticism of Ashley's parents but the latest update to their blog, January 13 third anniversary, was disheartening and biased in the extreme. Ashley's parents raise six bulleted points:
1. Ashley has a significant scoliosis, a curve of 56 degrees that has been stable for the last 14 months. If her scoliosis gets worse, to 75 degrees, surgery to straighten her spine and protect her organs will be required. The lack of progression of her scoliosis has lead her parents to wonder if growth attenuation has slowed its development. This is pure speculation. Scoliosis treatment has changed radically in the last four decades. As one who spent years in braces and eventually had scoliosis surgery I am well aware much of what was done to me decades ago could be considered experimental. Science has advanced as has the treatment of scoliosis but there is by no means a definitive course of treatment. To suggest growth attenuation slows the progression of scoliosis is misleading if not irresponsible.
2. Ashley's parents report that a dozen parents from all over the world have contacted them and reported their children (boys and girls) have had the Ashley Treatment. No country or countries of origin is identified. The parents also maintain that some hospitals have provided treatment while others have not. They refer to a case where the hospital ethics committee approved the treatment but hospital officials declined citing public relations concerns. These statement are dubious. For instance, they make a point to mention that both boys and girls have received the Ashley Treatment. To the best of my knowledge, no doctor, including Diekema, has suggested growth attenuation was a viable option for males. As for for hospital administrators declining to perform the Ashley Treatment because of adverse public relations seems misleading. I suspect the truth is that it is legally difficult to sterilize a minor. The laws in this regard are quite strict (not that they helped Ashley). Moreover, if the Ashley Case was looked at as setting a precedent lawyers would surely be aware of the added safeguards agreed to by the hospital and WPAS.
3. The parents refer to a 2008 panel on growth attenuation at a pediatric conference held in Hawaii. For more on this see the Mysteries Surrounding the Ashley Case website. The parents state most people attending this conference and panel in particular were in favor of growth attenuation. This may or may not be true. The parents were not present nor was I. They seem to rely on the private email from an unnamed physician present. It is worth pointing out here that the panelists included David B Allen, Douglas Diekema, Norman Fost, and Michal Kappy. All four have written and are outspoken proponents of the Ashley Treatment. These men can hardly be considered an unbiased source.
4. According to the parents, at the 2009 Treuman Katz Center for Pediatric Bioethics Diekema stated that the ethics committee at two major children hospitals have investigated growth attenuation and concluded there was no ethical reasons why the treatment could not be performed. If this is true, why did Diekema not identify the hospitals by name? This could only lend more credence to his position. Is it possible he exaggerated to make a point? Is this claim true?
5. The parents refer to an article in Pediatrics entitled "Growth Attenuation Therapy" noting that two pediatric endocrinologists and two bioethicists are in favor of the Ashley Treatment. This is correct and misleading at the same time. The people they are referring to are none other than Allen, Diekema, Fost and Kappy. The same men who were in Hawaii to present their findings.
6. The parents refer to an article in the American Journal of Bioethics, "Ashley Revisted", by Diekema and Fost that I have already critiqued on my blog. This paper is dreadful and utterly failed to do what it set out to do--engage critics of the Ashley Treatment. What the parents do not mention is the devastating rejoinders that accompanied the AJOB article. As is the custom for AJOB, critics had a chance to reply to the target article. Of the nine people that replied, I would consider eight sharply critical. The authors of these critiques are a diverse group and their comments worth serious consideration.
I did not expect Ashley's parents to suddenly be balanced when they updated their blog. But their rigorous and unrelenting sales job for growth attenuation is hard to understand. They had their proverbial fifteen minutes of fame and were on Larry King. What more do they want? Such updates come across badly, as though they are slapping themselves on the back for a job well done. What the parents have done is make some inroads among four men--Allen, Diekema, Fost and Kappy. All their references in medical journals refer to these men alone. No mention is made of a single critic. Hundreds of "supportive" and private emails are referred to on their blog yet not a single critic is identified or worthy of passing reference. One possible explanation for this is the fact the parents accept without question a medical model of disability. That is their daughter's problem is a physical and cognitive deficit. This is of course correct but the solution to the issues need not be met with a radical surgical solution. Doctors under a medical model of disability are the "experts" and this is true provided this expertise is limited to the human body. When it comes to the social ramifications of disability I have a far greater understanding than most people, including Ashley's doctors. I have spent much of my adult life thinking about disability and its meaning inside and outside of a hospital. I do not mean to dismiss the profound consequences of Ashley's disabilities but rather know that many of the issues she and her parents will encounter have well established solutions. They appear to me to not like these solutions and have instead distanced themselves from the very people who could provide answers to the dilemmas they will encounter. In short, Ashley's parents and their most recent update reveals they are hopelessly misguided. This is sad, a social failure if you will, and one I hope will not delude other parents into making a comparable mistake.
Monday, January 25, 2010
Errors in Fact: Baby Isaiah Updated
If one thing characterizes this blog I hope it is my passion. I passionately believe in disability rights. There is no doubt in my mind that disability rights and civil rights are one in the same. This passion is great but has a down side--sometimes I let my passion get ahead of me. I did this in my last post and as a result made some errors in fact. Two people were kind enough to point this out--Sam Sansalone and Barbara Farlow. Barbara Farlow left a long comment on my last post I urge everyone to read. She has also been kind enough to communicate with me via email. So what errors did I make?
I implied Barbara Farlow's daughter Annie died in the United States. This is wrong. Farlow has written about her experiences in Canadian and medical ethics journals. I read an interview with Farlow and articles she wrote, one that was published in the Hastings Center Report. I incorrectly assumed she was an American. Farlow has much to say, all of which is critically important, about her experiences with the medical establishment, human rights, and the legal system. Farlow is seeking to bring public awareness to a problem that is incredibly complex. But I would argue that complexity is a red herring. The fact is children, even those with what are deemed "lethal anomalies" deserve medical care, care that is in their best interests. This is what Farlow sought for her daughter and what every parent expects when dealing with a sick child. Based on what I have read Farlow's daughter needlessly suffered and as she wrote in her comment to my post " this reality must set off major alarm bells". I hear those bells loud and clear and can only hope through her efforts the medical establishment will as well.
I referred to Sam Sansalone and his daughter Katya who had Trisomy 13 like Farlow's daughter. I quoted Sansalone and those quotes came from Life Site News. While the quotes are correct I did not mean to imply Sansalone was speaking on behalf of the Family to Family Connections at Alberta Children's Hospital. Sansalone was speaking personally as the father of Katya. Sansalone is Co-Chair of the Advisory Committee to Family to Family Connections but he was not in any way representing the views of this group. I apologize for this error. I also need to point out that Sansalone did not claim that a child with or without Trisomy 13 is denied medical treatment or access to health care in the United States. The suggestion that what Sansalone and Farlow respective daughter's experienced takes place in other countries is my opinion. An opinion, that I will seek to support in future entries. But this contention is mine not Sansalone.
I spent a great deal of time this weekend thinking about Farlow and Sansalone. I remain as impassioned and troubled as I was last week. Here we have educated, dedicated, and caring parents that wanted what was best for their respective children. The medical system failed them and in my opinion did so in spectacular fashion. Both have become fierce advocates as a result in the hope no other children will experience a similar fate. I wish them well and hope to remain in contact with them as they have much to say. Frankly, I think the entire system inside and outside of the medical establishment must be changed. We need to embrace what children, all children, have to offer the world. We do not get to pick and choose who we decide treat. If a child, a so called normal child, receives routine medical care than what does it say about us as when we withhold the exact same treatment from child with profound disabilities. Judgments are being made and I would contend they are based less on science than an inherent bias against the most vulnerable and dare I say costly humans. The problem is not a matter of semantics but rather life and death--and I am not being melodramatic--just ask Sansalone and Farlow.
Two thoughts have looped through my mind the last few days. First, I wish an organization like Family to Family Connections existed when I was a sick child. I am sure my parents, and especially myself, would not have felt as isolated and alone. I surely would not have been as scared as I was when I approached major surgeries and painful procedures. I am sure my parents would have benefited from talking with other parents that were going through a comparable experience with their child. Second, I admire the determination and courage it takes to assert one's self as Sansalone and Farlow have done. I sincerely hope they have a strong bond as I suspect they do. But what I worry about is the children that do not have outstanding parents. What happens to children that have Trisomy 13 or comparable condition whose parents are not as dedicated? What happens to children or those whose parents simply accept what their doctor suggest? Farlow wrote to me that in the 1960s, the veritable Dark Ages of neonatology, that 15% of children like her daughter lived beyond a year. Now, they quote 5% live to six months. Could it be these children are encountering a lethal form of discrimination? I cannot answer this question but it is one worth serious thought. Afterall a recent report I read in Pediatrics revealed neonatal nurses thought death was preferable to life with a profound physical and cognitive disabilities. And here is where I am not all that different from such children. I know there are people that see me and a few who tell me directly that they would prefer to be dead than use a wheelchair. This comment always leaves me speechless. What, I wonder, is the point of making such an observation? Surely asserting one's social superiority is a variable but far more is going on socially. The same can be said when it comes to the treatment of children with profound disabilities and I hope Farlow and Sansalone can make others think about this important subject.
I implied Barbara Farlow's daughter Annie died in the United States. This is wrong. Farlow has written about her experiences in Canadian and medical ethics journals. I read an interview with Farlow and articles she wrote, one that was published in the Hastings Center Report. I incorrectly assumed she was an American. Farlow has much to say, all of which is critically important, about her experiences with the medical establishment, human rights, and the legal system. Farlow is seeking to bring public awareness to a problem that is incredibly complex. But I would argue that complexity is a red herring. The fact is children, even those with what are deemed "lethal anomalies" deserve medical care, care that is in their best interests. This is what Farlow sought for her daughter and what every parent expects when dealing with a sick child. Based on what I have read Farlow's daughter needlessly suffered and as she wrote in her comment to my post " this reality must set off major alarm bells". I hear those bells loud and clear and can only hope through her efforts the medical establishment will as well.
I referred to Sam Sansalone and his daughter Katya who had Trisomy 13 like Farlow's daughter. I quoted Sansalone and those quotes came from Life Site News. While the quotes are correct I did not mean to imply Sansalone was speaking on behalf of the Family to Family Connections at Alberta Children's Hospital. Sansalone was speaking personally as the father of Katya. Sansalone is Co-Chair of the Advisory Committee to Family to Family Connections but he was not in any way representing the views of this group. I apologize for this error. I also need to point out that Sansalone did not claim that a child with or without Trisomy 13 is denied medical treatment or access to health care in the United States. The suggestion that what Sansalone and Farlow respective daughter's experienced takes place in other countries is my opinion. An opinion, that I will seek to support in future entries. But this contention is mine not Sansalone.
I spent a great deal of time this weekend thinking about Farlow and Sansalone. I remain as impassioned and troubled as I was last week. Here we have educated, dedicated, and caring parents that wanted what was best for their respective children. The medical system failed them and in my opinion did so in spectacular fashion. Both have become fierce advocates as a result in the hope no other children will experience a similar fate. I wish them well and hope to remain in contact with them as they have much to say. Frankly, I think the entire system inside and outside of the medical establishment must be changed. We need to embrace what children, all children, have to offer the world. We do not get to pick and choose who we decide treat. If a child, a so called normal child, receives routine medical care than what does it say about us as when we withhold the exact same treatment from child with profound disabilities. Judgments are being made and I would contend they are based less on science than an inherent bias against the most vulnerable and dare I say costly humans. The problem is not a matter of semantics but rather life and death--and I am not being melodramatic--just ask Sansalone and Farlow.
Two thoughts have looped through my mind the last few days. First, I wish an organization like Family to Family Connections existed when I was a sick child. I am sure my parents, and especially myself, would not have felt as isolated and alone. I surely would not have been as scared as I was when I approached major surgeries and painful procedures. I am sure my parents would have benefited from talking with other parents that were going through a comparable experience with their child. Second, I admire the determination and courage it takes to assert one's self as Sansalone and Farlow have done. I sincerely hope they have a strong bond as I suspect they do. But what I worry about is the children that do not have outstanding parents. What happens to children that have Trisomy 13 or comparable condition whose parents are not as dedicated? What happens to children or those whose parents simply accept what their doctor suggest? Farlow wrote to me that in the 1960s, the veritable Dark Ages of neonatology, that 15% of children like her daughter lived beyond a year. Now, they quote 5% live to six months. Could it be these children are encountering a lethal form of discrimination? I cannot answer this question but it is one worth serious thought. Afterall a recent report I read in Pediatrics revealed neonatal nurses thought death was preferable to life with a profound physical and cognitive disabilities. And here is where I am not all that different from such children. I know there are people that see me and a few who tell me directly that they would prefer to be dead than use a wheelchair. This comment always leaves me speechless. What, I wonder, is the point of making such an observation? Surely asserting one's social superiority is a variable but far more is going on socially. The same can be said when it comes to the treatment of children with profound disabilities and I hope Farlow and Sansalone can make others think about this important subject.
Friday, January 22, 2010
Baby Isaiah and the Value of Human Life
Readers will recall I that wrote about Baby RB in Britain and a somewhat similar case has arisen in Alberta, Canada. Baby Isaiah James May was born last October and suffered severe oxygen deprivation. After a complicated and prolonged birth the baby was placed on a ventilator at Rocky Mountain Hospital and transferred to Alberta Health Services (AHS) Stollery Children’s Hospital. On January 13 the parents received a letter from the AHS that stated their child’s doctors thought everything had been done to help Baby Isaiah. In their estimation “the diagnosis is unchanged: your son suffered severe anoxic brain injury at birth and has irreversible brain damage. There is no hope of recovery”. The letter went on to state that “it is with sadness that we are advising you that your treatment team will discontinue mechanical ventilation support to Isaiah after 2p.m. Wednesday, January 20, 2010”.
I cannot imagine what Baby Isaiah’s parents, Isaac and Rebecka May have been through since their son was born. But even by the most cold hardened standards the letter quoted that I found on the CTV.ca website is hard to read much less accept. Like Baby RB, I have no idea what is in the best interests of Baby Isaiah. But Baby Isaiah’s parents do not want their child to be disconnected from his ventilator. The Mays and their lawyer want the hospital to delay their decision for 90 days. AHS and the Mays went to court in part because the AHS told the court they were willing to wait 30 days. Madame Justice Michelle Crighton is considering the position of the parents and AHS. She has stated that she needs time to consider the arguments presented to her. In short, the court will decide Baby Isaiah’s fate.
I find the case of Baby RB and Baby Isaiah disturbing. I cannot fathom how the parents and doctors cannot find common ground and work together and as a team decide what is in the best interests of the child. Such a divide between parents and doctors makes me wonder if I was lucky to be sick at a time when life and death decisions such as those my parents faced with me were clear cut. As medicine has advanced people are living longer as are infants born with profound physical and cognitive deficits. But what sort of life are people leading? And more to the point, how does society value those humans that have profound physical and or cognitive deficits? If I have learned one thing in my life it is that individuals with a disability life is subject to debate. That is, doctors, nurses, administrators, and people like Peter Singer feel free to openly question the quality of life for those with a physical or cognitive deficit. So called normal people, adults and children alike, are a class apart. The people with a disability that are at the greatest risk include infants born with profound physical and cognitive deficits and genetic conditions such as Trisomy 13 among others. Based on my reading, particularly the experiences of parents whose children are born with profound and complex disabilities, parents are given the illusion of choice and informed consent. The information they get from the doctors charged with caring for their children is heavily edited if not directly misleading. The underlying assumption made is their children are not fully human and as such do not have the same rights as others.
Two parental experiences in this regard have haunted me recently. First, the experience of Barbara Farlow as expressed in “Misgivings” published in the Hastings Center Report (September/October 2009) and Sam Sansalone’s story of how he fought to save the life of his daughter, Katya, who was born with Trisomy 13. For more about Sam Sansalone’s experiences see What Sorts of People and the Advisory Committee of Family to Family Connections at Alberta Children’s Hospital. Sansalones’s experiences should cause each and ever person to think long and hard about medical care, medical ethics, and what it means to be human. Sansalone’s does not mince words: He maintains that “in Canada profoundly disabled kids are routinely—and intentionally—not treated with life saving intervention”. Based on his experience, he thinks that when his daughter was born eight years ago “the clear mandate, at least at that time, was that you don’t save these disabled children’s lives. You allow them to die—even though the needed interventions are exactly the same as would routinely and unquestionably be given to quote unquote normal children” I disagree with just one aspect of Sansalone’s assessment of the situation. The exact same thing takes place in the United States. Surely Barbara Farlow’s experience with her daughter Annie is evidence of this. Farlow wrote about her experience having a child with Trisomy 13. She knew her decision to have her baby and knowing about her condition was not common. She was well aware of the fact most children born with Trisomy 13 live a very short life, just hours in some cases. But when her daughter was born she did not have the expected brain defect or cardiac condition that was anticipated. She was not blind or deaf and her major organs were structurally sound. She recalled being shocked and delighted until a medical fellow asked her “Do you really want to treat this child? She’s going to have disabilities”. Farlow’s daughter died some time later and she had a “nagging sense” that the events at the end of her life were illogical. Over the next two years what she learned was shocking—that her daughter not only needlessly suffered before she died but her death was most likely preventable. Imagine her dismay when she read the coroner’s report that declared the events of her daughter’s final admission to the hospital “do not represent appropriate forms of care”.
Focus here: “do not represent appropriate forms of care”. Are infants such as those with Trisomy 13 out of the norm? Yes, but this does not mean they are not human. It does not mean they should be allowed to die and experience a “slow code blue” as Farlow’s child did on the final day of her life. This phrase “do not represent appropriate forms of care” does not begin nor does it end with children with Trisomy 13. The lack of appropriate care starts at birth for some, at the onset of a given disability later in life for others such as myself. But what this phrase reveals is the lack of appropriate care is a social not a medical failure. I contend the experience of Sansalone and Farlow is akin to the ripple effect on a pond and they are toward the center. People like me are farther away from the center but affected nonetheless. All human life has value and I for one cherish my autonomy. Yet I am not always autonomous, fully independent, because I am paralyzed. This rarely bothers me and I have learned there is nothing wrong with asking for help from time to time. What does keep me awake at night is the knowledge that others consider my existence a tragedy or that I am living proof of the limits of medical science. What this narrative overlooks is quite simple: I remain a human being.
I cannot imagine what Baby Isaiah’s parents, Isaac and Rebecka May have been through since their son was born. But even by the most cold hardened standards the letter quoted that I found on the CTV.ca website is hard to read much less accept. Like Baby RB, I have no idea what is in the best interests of Baby Isaiah. But Baby Isaiah’s parents do not want their child to be disconnected from his ventilator. The Mays and their lawyer want the hospital to delay their decision for 90 days. AHS and the Mays went to court in part because the AHS told the court they were willing to wait 30 days. Madame Justice Michelle Crighton is considering the position of the parents and AHS. She has stated that she needs time to consider the arguments presented to her. In short, the court will decide Baby Isaiah’s fate.
I find the case of Baby RB and Baby Isaiah disturbing. I cannot fathom how the parents and doctors cannot find common ground and work together and as a team decide what is in the best interests of the child. Such a divide between parents and doctors makes me wonder if I was lucky to be sick at a time when life and death decisions such as those my parents faced with me were clear cut. As medicine has advanced people are living longer as are infants born with profound physical and cognitive deficits. But what sort of life are people leading? And more to the point, how does society value those humans that have profound physical and or cognitive deficits? If I have learned one thing in my life it is that individuals with a disability life is subject to debate. That is, doctors, nurses, administrators, and people like Peter Singer feel free to openly question the quality of life for those with a physical or cognitive deficit. So called normal people, adults and children alike, are a class apart. The people with a disability that are at the greatest risk include infants born with profound physical and cognitive deficits and genetic conditions such as Trisomy 13 among others. Based on my reading, particularly the experiences of parents whose children are born with profound and complex disabilities, parents are given the illusion of choice and informed consent. The information they get from the doctors charged with caring for their children is heavily edited if not directly misleading. The underlying assumption made is their children are not fully human and as such do not have the same rights as others.
Two parental experiences in this regard have haunted me recently. First, the experience of Barbara Farlow as expressed in “Misgivings” published in the Hastings Center Report (September/October 2009) and Sam Sansalone’s story of how he fought to save the life of his daughter, Katya, who was born with Trisomy 13. For more about Sam Sansalone’s experiences see What Sorts of People and the Advisory Committee of Family to Family Connections at Alberta Children’s Hospital. Sansalones’s experiences should cause each and ever person to think long and hard about medical care, medical ethics, and what it means to be human. Sansalone’s does not mince words: He maintains that “in Canada profoundly disabled kids are routinely—and intentionally—not treated with life saving intervention”. Based on his experience, he thinks that when his daughter was born eight years ago “the clear mandate, at least at that time, was that you don’t save these disabled children’s lives. You allow them to die—even though the needed interventions are exactly the same as would routinely and unquestionably be given to quote unquote normal children” I disagree with just one aspect of Sansalone’s assessment of the situation. The exact same thing takes place in the United States. Surely Barbara Farlow’s experience with her daughter Annie is evidence of this. Farlow wrote about her experience having a child with Trisomy 13. She knew her decision to have her baby and knowing about her condition was not common. She was well aware of the fact most children born with Trisomy 13 live a very short life, just hours in some cases. But when her daughter was born she did not have the expected brain defect or cardiac condition that was anticipated. She was not blind or deaf and her major organs were structurally sound. She recalled being shocked and delighted until a medical fellow asked her “Do you really want to treat this child? She’s going to have disabilities”. Farlow’s daughter died some time later and she had a “nagging sense” that the events at the end of her life were illogical. Over the next two years what she learned was shocking—that her daughter not only needlessly suffered before she died but her death was most likely preventable. Imagine her dismay when she read the coroner’s report that declared the events of her daughter’s final admission to the hospital “do not represent appropriate forms of care”.
Focus here: “do not represent appropriate forms of care”. Are infants such as those with Trisomy 13 out of the norm? Yes, but this does not mean they are not human. It does not mean they should be allowed to die and experience a “slow code blue” as Farlow’s child did on the final day of her life. This phrase “do not represent appropriate forms of care” does not begin nor does it end with children with Trisomy 13. The lack of appropriate care starts at birth for some, at the onset of a given disability later in life for others such as myself. But what this phrase reveals is the lack of appropriate care is a social not a medical failure. I contend the experience of Sansalone and Farlow is akin to the ripple effect on a pond and they are toward the center. People like me are farther away from the center but affected nonetheless. All human life has value and I for one cherish my autonomy. Yet I am not always autonomous, fully independent, because I am paralyzed. This rarely bothers me and I have learned there is nothing wrong with asking for help from time to time. What does keep me awake at night is the knowledge that others consider my existence a tragedy or that I am living proof of the limits of medical science. What this narrative overlooks is quite simple: I remain a human being.
Wednesday, January 20, 2010
Making Progress Two Kids at a Time
Last weekend I went skiing with my son and seven of his friends. Yikes, eight teenagers are a handful! The boys and girls I was with reminded me of puppies--they had high highs and low lows. The highs were accompanied by loud music, lots of laughter, drinking too much soda, and eating gigantic proportions of food. The lows were hard to wake up kids in the morning and sleeping kids after skiing on the drive back to where we stayed. When skiing I did not see much of my son or his friends. They went one way and I suspect wanted to strike out on their own without adult supervision. I cannot blame them too much as this is exactly what I would have done if I were seventeen and had my girlfriend with me as my son did. We all had a great time and I particularly enjoyed the evenings as I was able to socialize with friends while my son did the same thing with his peers.
The weekend was enhanced by good weather and the snow condition when skiing was excellent. The weekend for me had two highlights.
First, we skied at Sugarbush, Mt. Ellen. I skied with Vermont Adaptive and was lucky to have two great instructors. While all the instructors at Vermont Adaptive are good I happen to have a good rapport with the two people I went skiing with. I am proud to report I continue to make progress and have gotten over much of the fear I once had. I truly trust my equipment to do what it is supposed to do and spent most of the day on intermediate terrain. The best part of the trip though was making it to the top of the mountain. The lower mountain was socked in by clouds. It was pretty foggy and we heard it was clear at the top. Relying on iffy second hand reports we took the lift to the top of the mountain and at the second to last stanchion broke through the clouds. A crystal clear blue sky and trees covered in snow and ice were a sight to behold. I was not the only person to be amazed by the beauty. A group of people stopped near the lift and were looking at the cloud covered valley below. It was truly breath taking and something that I hope to never forget. When I see a sight like that I realize what gift life is and how marvelous nature can be.
Second, at the start of one run we stopped to discuss what direction we were going to go when I noticed two small girls skiing with their father. I was obviously fascinating to them as they were flat out starring at me in wonder and burning with curiosity. I caught their eye, said hello and asked them if they had any questions. Delight spread across their faces and they wanted to know how I skied, got on and off the lift, and if it was fun to sit ski. Their father looked mortified and I hope the broad smile on my face was evidence that his kids questions were welcome. I assure these girls skiing was fun, that with a little help getting and off the lift was no problem and asked them if they would like to watch me go and ski first. This delighted them even more and now the pressure was on! I had better not fall, spend any time traversing, and show them what I could do. I am happy to report that I did well and went about half way down the mountain before stopping and was delighted to see that the two kids had followed me the entire way. When we chatted again I told them that this time I was going to follow them and wanted to see how good they were. This too delighted the girls and off they went.
My experience getting off the lift that revealed a brilliant blue ski and short exchange with the two kids emphasized why skiing is so much fun for me personally and has the potential to change the way people perceive disability. The two kids I met on the slopes thought I was cool. They did not care one iota that I used a wheelchair and could not walk. They saw a person skiing in a different way and wanted to know if it was fun. This was innocent curiosity and open mindedness at is best. I would like to think those two kids will remember my broad smile, willingness to answer questions, and assurance that sit skiing is fun. And for most people the point of skiing is to have fun. So today days after skiing and getting back to work I still have a smile on my face. I changed the world or maybe at least influenced two little kids and saw a magnificent sight that is etched in my mind. I did all this and enabled my son to have an awesome weekend as well. Life is feeling really good right now.
The weekend was enhanced by good weather and the snow condition when skiing was excellent. The weekend for me had two highlights.
First, we skied at Sugarbush, Mt. Ellen. I skied with Vermont Adaptive and was lucky to have two great instructors. While all the instructors at Vermont Adaptive are good I happen to have a good rapport with the two people I went skiing with. I am proud to report I continue to make progress and have gotten over much of the fear I once had. I truly trust my equipment to do what it is supposed to do and spent most of the day on intermediate terrain. The best part of the trip though was making it to the top of the mountain. The lower mountain was socked in by clouds. It was pretty foggy and we heard it was clear at the top. Relying on iffy second hand reports we took the lift to the top of the mountain and at the second to last stanchion broke through the clouds. A crystal clear blue sky and trees covered in snow and ice were a sight to behold. I was not the only person to be amazed by the beauty. A group of people stopped near the lift and were looking at the cloud covered valley below. It was truly breath taking and something that I hope to never forget. When I see a sight like that I realize what gift life is and how marvelous nature can be.
Second, at the start of one run we stopped to discuss what direction we were going to go when I noticed two small girls skiing with their father. I was obviously fascinating to them as they were flat out starring at me in wonder and burning with curiosity. I caught their eye, said hello and asked them if they had any questions. Delight spread across their faces and they wanted to know how I skied, got on and off the lift, and if it was fun to sit ski. Their father looked mortified and I hope the broad smile on my face was evidence that his kids questions were welcome. I assure these girls skiing was fun, that with a little help getting and off the lift was no problem and asked them if they would like to watch me go and ski first. This delighted them even more and now the pressure was on! I had better not fall, spend any time traversing, and show them what I could do. I am happy to report that I did well and went about half way down the mountain before stopping and was delighted to see that the two kids had followed me the entire way. When we chatted again I told them that this time I was going to follow them and wanted to see how good they were. This too delighted the girls and off they went.
My experience getting off the lift that revealed a brilliant blue ski and short exchange with the two kids emphasized why skiing is so much fun for me personally and has the potential to change the way people perceive disability. The two kids I met on the slopes thought I was cool. They did not care one iota that I used a wheelchair and could not walk. They saw a person skiing in a different way and wanted to know if it was fun. This was innocent curiosity and open mindedness at is best. I would like to think those two kids will remember my broad smile, willingness to answer questions, and assurance that sit skiing is fun. And for most people the point of skiing is to have fun. So today days after skiing and getting back to work I still have a smile on my face. I changed the world or maybe at least influenced two little kids and saw a magnificent sight that is etched in my mind. I did all this and enabled my son to have an awesome weekend as well. Life is feeling really good right now.
Thursday, January 14, 2010
The Ashley Treatment in AJOB
Last October I wrote about the latest article set to be published about the Ashley Treatment by Doug Diekema and Norman Fost. Here I refer to "Ashley Revisited: A Response to Critics". Well, the paper has just been published by the American Journal of Bioethics, AJOB, in its latest issue (V. 10, #1 January 2010). This was a dreadful paper when I read it months ago and it remains dreadful today. I need not rehash my criticism I posted in October despite the fact I am tempted to do so. What is of interest is the Open Peer Commentary. Nine scholars wrote short replies to the target article by Diekema and Fost. Of these nine commentaries I would consider one supportive and the other eight critical. It will take me a few days to assimilate all the critics various viewpoints. Suffice it to say I am delighted by the sharply critical replies. Most of the commentaries are polite to a fault but one stands out for the severity and tone of its critique. Here I refer to John Lantos, "It's Not Growth Attenuation It's Sterilization!" I do not know Lantos who works at Children's Mercy Hospital nor have I ever read a word he wrote but the man can write that's for sure.
Lantos appropriately praises Diekema for his 2003 paper "Involuntary Sterilization of Persons with Mental Retardation: An Ethical Analysis" that reviewed the controversial issue with a checkered past. The fact Diekema wrote this paper is fascinating as he of all people should have been acutely aware of the legal and moral issues involved in sterilizing a child like Ashley. Lantos points out Ashley's doctors should have sought a judicial review and the fact this was not done was a "major, inexplicable, and damning transgression". Worse yet, Diekema and Fost now defend that course of action or inaction. Others have raised this point and focused on the procedural violation but Lantos has a fascinating point to add: "The case becomes an example of arrogance and secretiveness by doctors and hospitals. It reinforces, rather than challenges, the strong societal prohibitions on sterilization for children like Ashley". Lantos also argues that the title of Diekema and Gunther original paper was misleading, an effort to get people not to look too closely to what was done, especially the removal of Ashley's breast buds. Lantos suggests that the original paper, "Attenuating Growth in Children with Profound Developmental Disability: A New Approach to an Old Dilemma" should have been titled "Attenuating Growth, Involuntary Sterilization, and Prophylactic Mastectomy in Children with Profound Disability: A New Approach". Ouch, that one hurts!
After reading all the commentaries about which I will have more to say in another post I was struck by Diekema and Fost staunch defense. They clearly believe they have done nothing wrong and that there are no flaws of any sort in their line of reasoning. Critics, especially those in the disability rights field are driven by ideology rather than factual information. This is not only wrong but ironic in that many errors in fact and contradictory statements have been made by Diekema and Fost since 2007. People such as Dick Sobsey and others have pointed out such factual errors. For more information in this regard read the excellent posts on What Sorts of People. What I find amazing is that an institution like Seattle Children Hospital can admit it made mistakes, state this publicly and yet Diekema and Fost cannot admit to any error or mistakes. Perfection I suppose must be a wonderful thing. Too bad we humans are incapable of this--even Diekema and Fost.
Lantos appropriately praises Diekema for his 2003 paper "Involuntary Sterilization of Persons with Mental Retardation: An Ethical Analysis" that reviewed the controversial issue with a checkered past. The fact Diekema wrote this paper is fascinating as he of all people should have been acutely aware of the legal and moral issues involved in sterilizing a child like Ashley. Lantos points out Ashley's doctors should have sought a judicial review and the fact this was not done was a "major, inexplicable, and damning transgression". Worse yet, Diekema and Fost now defend that course of action or inaction. Others have raised this point and focused on the procedural violation but Lantos has a fascinating point to add: "The case becomes an example of arrogance and secretiveness by doctors and hospitals. It reinforces, rather than challenges, the strong societal prohibitions on sterilization for children like Ashley". Lantos also argues that the title of Diekema and Gunther original paper was misleading, an effort to get people not to look too closely to what was done, especially the removal of Ashley's breast buds. Lantos suggests that the original paper, "Attenuating Growth in Children with Profound Developmental Disability: A New Approach to an Old Dilemma" should have been titled "Attenuating Growth, Involuntary Sterilization, and Prophylactic Mastectomy in Children with Profound Disability: A New Approach". Ouch, that one hurts!
After reading all the commentaries about which I will have more to say in another post I was struck by Diekema and Fost staunch defense. They clearly believe they have done nothing wrong and that there are no flaws of any sort in their line of reasoning. Critics, especially those in the disability rights field are driven by ideology rather than factual information. This is not only wrong but ironic in that many errors in fact and contradictory statements have been made by Diekema and Fost since 2007. People such as Dick Sobsey and others have pointed out such factual errors. For more information in this regard read the excellent posts on What Sorts of People. What I find amazing is that an institution like Seattle Children Hospital can admit it made mistakes, state this publicly and yet Diekema and Fost cannot admit to any error or mistakes. Perfection I suppose must be a wonderful thing. Too bad we humans are incapable of this--even Diekema and Fost.
Tuesday, January 12, 2010
Terri Schiavo and the Politics of Disability
Like most people, I followed the Terri Schiavo case when it was splashed across the national news. I was not impressed with anyone or any group that spoke out. I was even less impressed when legislators got involved. To me, the case was a family matter, one that should have been resolved by those that knew and loved Schiavo. If blame needed to be assessed, and we Americans love to play the blame game, it should have been pointed squarely at the family for their inability to put aside their differences. In short, I think the case never should have become a media and political circus.
I have been thinking about the Schiavo case for two reasons: first, I am struggling to get through the Montana Supreme Court decision in the Baxter case. I am not a lawyer and reading through the 68 page decision is an exercise in frustration. Second, a book has been published, The Case of Terri Schiavo: Ethics, Politics, and Death in the 21st Century edited by Kenneth W. Goodman. The book consists of ten chapters written by different scholars and includes a fascinating chapter by Schiavo's guardian ad litum and a particularly useful appendix that has a timeline of key events. The scope of the book is impressive and for those interested in first hand accounts of what took place I highly recommend the book with the proviso the entries all have a particular point to make. Politics and passion abound even after the passage of time. Of great interest to me was the Introduction by Kenneth W. Goodman and the chapter, Disability Rights and Wrongs in the Terri Schiavo Case, by Lawrence Nelson. Both Goodman and Nelson are severely critical of the disability rights activists involved in the Schiavo case, notably Not Dead Yet. Goodman decries the fact the the Schiavo case became the "cause celebre by the militant wing of the disability rights community". Goodman did not consider Schiavo to be disabled. He wrote that "to regard Schiavo disabled was a perverse disservice to the millions of people who need assistance with tasks involving moving, hearing, seeing, even thinking. With assistance, they can accomplish and experience many things". Gee thanks! I guess with assistance we crippled people can accomplish amazing things! Obviously Goodman perceives disability as being nothing more than a physical or cognitive deficit and those with a disability in need of assistance. He acknowledges and quickly dismisses the social dimensions of disability and disability based prejudice. A medical model of disability is accepted without question but what seems to annoy Goodman the most is the lack of rigor among disability activists. He considers the position of disability activists in the Schiavo case flawed on three grounds:
1. They had no coherent definition of disability.
2. Disability activists actions were politically motivated. Disability activists also made alliances with conservative groups that had expressed no prior interest in disability rights.
3. The actions of disability rights activists reduced the rights of people with a disability who wanted to refuse burdensome treatment.
Goodman is correct in maintaining that the Schiavo case created strange political alliances. These alliances, particularly between disability activists and conservative Christians, exist to this day and are highly problematic in my estimation. As I have already noted it is these alliances that prevent me from becoming more active in the movement against assisted suicide. But what bothers me is why Goodman cannot understand why the definition of disability must be precise or in his words coherent. Disability is an elastic term, its definition broad by design, and this has not changed legally in over 30 years. Like Goodman, in Nelson's chapter on disability and the Schiavo case he struggles with the idea she was disabled. He considered the position of disability rights activists inherently flawed because of this and based on ideology and their own convictions. Thus Nelson does not even begin to grasp the points made by Diane Coleman of Not Dead Yet for instance. While Nelson, like Goodman acknowledges prejudice exists against people with a disability and condemns such behavior but considers it to be apart from from individual cases like Schiavo. In his estimation it is not wrong to forego medical treatment in any individual case involving a disabled person. In a world free of bias I would agree with Nelson's position. However, we live in a world where people with a disability existence is not valued, they are likely to be poor, under or not insured, socially disadvantaged, and with far fewer options than a person without a disability. Accordingly, it is disingenuous to characterize Coleman's claim that some people want to kill the disabled behind closed doors as being "bizarre", "unsupported by evidence", and "irresponsible". The fact is people with a disability have often been subject to questionable medical treatment, forcibly sterilized during the Eugenics era, and considered "dogs" by contemporary insurance companies. A pattern of abuse is well established as is a long history of devaluation.
Nelson concluded his chapter by writing the disability activists involved in the Schiavo case were shrewdly practical and political. I agree the involvement of disability activists was political. This does not mean their ultimate aim, equality for people with a disability is wrong as I am all for creating a new and positive view of disability in American society. What Goodman and Nelson do not consider or want to write about is the shadowy history and tenuous place people with a disability have in American society. When the Schiavo case was in the news Iowa Sen. Tom Harkin, a Democrat and proponent of disability rights told reporters, "There are a lot of people in the shadows, all over this country, who are incapacitated because of a disability, and many times there is no one to speak for them, and it is hard to determine what their wishes really are or were. So I think there ought to be a broader type of a proceeding that would apply to people in similar circumstances who are incapacitated." I for one think this is not only a good idea but in the best interests of all people, those with and those without a disability at the present time.
I have been thinking about the Schiavo case for two reasons: first, I am struggling to get through the Montana Supreme Court decision in the Baxter case. I am not a lawyer and reading through the 68 page decision is an exercise in frustration. Second, a book has been published, The Case of Terri Schiavo: Ethics, Politics, and Death in the 21st Century edited by Kenneth W. Goodman. The book consists of ten chapters written by different scholars and includes a fascinating chapter by Schiavo's guardian ad litum and a particularly useful appendix that has a timeline of key events. The scope of the book is impressive and for those interested in first hand accounts of what took place I highly recommend the book with the proviso the entries all have a particular point to make. Politics and passion abound even after the passage of time. Of great interest to me was the Introduction by Kenneth W. Goodman and the chapter, Disability Rights and Wrongs in the Terri Schiavo Case, by Lawrence Nelson. Both Goodman and Nelson are severely critical of the disability rights activists involved in the Schiavo case, notably Not Dead Yet. Goodman decries the fact the the Schiavo case became the "cause celebre by the militant wing of the disability rights community". Goodman did not consider Schiavo to be disabled. He wrote that "to regard Schiavo disabled was a perverse disservice to the millions of people who need assistance with tasks involving moving, hearing, seeing, even thinking. With assistance, they can accomplish and experience many things". Gee thanks! I guess with assistance we crippled people can accomplish amazing things! Obviously Goodman perceives disability as being nothing more than a physical or cognitive deficit and those with a disability in need of assistance. He acknowledges and quickly dismisses the social dimensions of disability and disability based prejudice. A medical model of disability is accepted without question but what seems to annoy Goodman the most is the lack of rigor among disability activists. He considers the position of disability activists in the Schiavo case flawed on three grounds:
1. They had no coherent definition of disability.
2. Disability activists actions were politically motivated. Disability activists also made alliances with conservative groups that had expressed no prior interest in disability rights.
3. The actions of disability rights activists reduced the rights of people with a disability who wanted to refuse burdensome treatment.
Goodman is correct in maintaining that the Schiavo case created strange political alliances. These alliances, particularly between disability activists and conservative Christians, exist to this day and are highly problematic in my estimation. As I have already noted it is these alliances that prevent me from becoming more active in the movement against assisted suicide. But what bothers me is why Goodman cannot understand why the definition of disability must be precise or in his words coherent. Disability is an elastic term, its definition broad by design, and this has not changed legally in over 30 years. Like Goodman, in Nelson's chapter on disability and the Schiavo case he struggles with the idea she was disabled. He considered the position of disability rights activists inherently flawed because of this and based on ideology and their own convictions. Thus Nelson does not even begin to grasp the points made by Diane Coleman of Not Dead Yet for instance. While Nelson, like Goodman acknowledges prejudice exists against people with a disability and condemns such behavior but considers it to be apart from from individual cases like Schiavo. In his estimation it is not wrong to forego medical treatment in any individual case involving a disabled person. In a world free of bias I would agree with Nelson's position. However, we live in a world where people with a disability existence is not valued, they are likely to be poor, under or not insured, socially disadvantaged, and with far fewer options than a person without a disability. Accordingly, it is disingenuous to characterize Coleman's claim that some people want to kill the disabled behind closed doors as being "bizarre", "unsupported by evidence", and "irresponsible". The fact is people with a disability have often been subject to questionable medical treatment, forcibly sterilized during the Eugenics era, and considered "dogs" by contemporary insurance companies. A pattern of abuse is well established as is a long history of devaluation.
Nelson concluded his chapter by writing the disability activists involved in the Schiavo case were shrewdly practical and political. I agree the involvement of disability activists was political. This does not mean their ultimate aim, equality for people with a disability is wrong as I am all for creating a new and positive view of disability in American society. What Goodman and Nelson do not consider or want to write about is the shadowy history and tenuous place people with a disability have in American society. When the Schiavo case was in the news Iowa Sen. Tom Harkin, a Democrat and proponent of disability rights told reporters, "There are a lot of people in the shadows, all over this country, who are incapacitated because of a disability, and many times there is no one to speak for them, and it is hard to determine what their wishes really are or were. So I think there ought to be a broader type of a proceeding that would apply to people in similar circumstances who are incapacitated." I for one think this is not only a good idea but in the best interests of all people, those with and those without a disability at the present time.
Wednesday, January 6, 2010
O' Canada: Citizenship and Disability
Some readers may recall I wrote about the Chapman family in the summer of 2008. Briefly, the Chapman family was denied entry into Canada because they have a child with a disability. I was outraged by this story and it appears the same thing is happening again. This time a French family who were encouraged to move to Montreal by an embassy official in Paris hasve been told they cannot remain in Canada. The reason given is the same one the Chapman's heard: their daughter, who has cerebral palsy, would place an "excessive burden on social services". It is estimated that the child might cost health and social services up to $5,000 a year more than a so called normal child. Essentially what Canadian officials have decided is that any person, adult or child, with a disabling condition is not eligible for citizenship because they are deemed too costly. If you want to take an even harder view, one could argue children with a disability whose parent wants to move to Canada are not fully human and instead are a kind of unwanted property.
David Barlagne and his family are now in a difficult situation. They took a chance and moved to Montreal in 2005. Barlagne told Canadian officials his daughter had cerebral palsy upfront. He was assured that if his business was successful he would not encounter any problems becoming citizen. Five years later Barlagne is in trouble despite the fact his business is thriving. Citizenship and Immigration Canada has rejected Barlagne's request for permanent residency because his daughter is "medically inadmissible". In a letter to Barlagne Citizenship and Immigration Canada wrote that his daughter suffered from a "global delay" and she "risks giving rise to an excessive burden on social health services". Barlagne is mad and I cannot blame him. He told news reporters that "it's very unfair. What I find particularly unjust is that a representative of the government of Canada told me 'Come to Canada, no problem' yet after arriving in Quebec and contributing to society here, we can't stay anymore." Sadly, there is not much Barlagne can do. He is seeking a judicial review in Federal Court of Immigration Canada's decision. If he wins another Immigration Canada adjudicator would review the case. If he loses he and his family must leave Canada immediately.
There is no doubt in my mind Barlagne was mislead, perhaps mistakenly, and is in deep trouble. Based on how the Chapman's were treated in 2008 I think he and his family have no chance to stay in Canada. The Canadian press has been neutral in the reports I have seen. Some have been supportive of immigration officials. For instance, Jacqueline Ruby, an Immigration Canada spokesperson noted that such cases "are difficult for our department and are heartbreaking to our staff". Oh, spare the false pity. What is heartbreaking is a family that tore up its roots and moved to a different country. In addition through hard work and determination during a time of financial chaos a family man started a successful business only to be told sorry your crippled daughter is a costly burden on Canadian society. Of course Immigration Canada views the situation differently: "In general Canada is hoping that more skilled workers, investors, entrepreneurs, and other individuals will immigrate to Canada. Nonetheless, it is also the goal of Citizenship and Immigration Canada to maintain an appropriate balance between welcoming new members into Canadian society while protecting our publicly funded health and social services".
What a great country Canada is! It is protecting itself rather than discriminating against a class of people. That class of people are all those with a disability. Now I know where I rate. I am an "expensive burden on social services". I bet Canadian officials will be more than willing to take my tourism dollars if I care to visit but I am not worthy of citizenship. Immigration officials have made this abundantly clear with the Chapman's and now have reinforced that position with the Barlagne's. I also suspect that the Chapman's and the Barlagne's are far from unique. How many families I wonder do not fight back and make their stories public? Immigration Canada's position is truly outrageous and highly bigoted. A class of people have been deemed unfit for citizenship and I am a member of this group. So the next time someone tells me the disability rights battle has been won I will point out that in Canada I am welcome to visit but in reality an excessive burden on social services and as such not eligible for citizenship. Yikes, and I thought we had problems in the USA!
David Barlagne and his family are now in a difficult situation. They took a chance and moved to Montreal in 2005. Barlagne told Canadian officials his daughter had cerebral palsy upfront. He was assured that if his business was successful he would not encounter any problems becoming citizen. Five years later Barlagne is in trouble despite the fact his business is thriving. Citizenship and Immigration Canada has rejected Barlagne's request for permanent residency because his daughter is "medically inadmissible". In a letter to Barlagne Citizenship and Immigration Canada wrote that his daughter suffered from a "global delay" and she "risks giving rise to an excessive burden on social health services". Barlagne is mad and I cannot blame him. He told news reporters that "it's very unfair. What I find particularly unjust is that a representative of the government of Canada told me 'Come to Canada, no problem' yet after arriving in Quebec and contributing to society here, we can't stay anymore." Sadly, there is not much Barlagne can do. He is seeking a judicial review in Federal Court of Immigration Canada's decision. If he wins another Immigration Canada adjudicator would review the case. If he loses he and his family must leave Canada immediately.
There is no doubt in my mind Barlagne was mislead, perhaps mistakenly, and is in deep trouble. Based on how the Chapman's were treated in 2008 I think he and his family have no chance to stay in Canada. The Canadian press has been neutral in the reports I have seen. Some have been supportive of immigration officials. For instance, Jacqueline Ruby, an Immigration Canada spokesperson noted that such cases "are difficult for our department and are heartbreaking to our staff". Oh, spare the false pity. What is heartbreaking is a family that tore up its roots and moved to a different country. In addition through hard work and determination during a time of financial chaos a family man started a successful business only to be told sorry your crippled daughter is a costly burden on Canadian society. Of course Immigration Canada views the situation differently: "In general Canada is hoping that more skilled workers, investors, entrepreneurs, and other individuals will immigrate to Canada. Nonetheless, it is also the goal of Citizenship and Immigration Canada to maintain an appropriate balance between welcoming new members into Canadian society while protecting our publicly funded health and social services".
What a great country Canada is! It is protecting itself rather than discriminating against a class of people. That class of people are all those with a disability. Now I know where I rate. I am an "expensive burden on social services". I bet Canadian officials will be more than willing to take my tourism dollars if I care to visit but I am not worthy of citizenship. Immigration officials have made this abundantly clear with the Chapman's and now have reinforced that position with the Barlagne's. I also suspect that the Chapman's and the Barlagne's are far from unique. How many families I wonder do not fight back and make their stories public? Immigration Canada's position is truly outrageous and highly bigoted. A class of people have been deemed unfit for citizenship and I am a member of this group. So the next time someone tells me the disability rights battle has been won I will point out that in Canada I am welcome to visit but in reality an excessive burden on social services and as such not eligible for citizenship. Yikes, and I thought we had problems in the USA!
Friday, January 1, 2010
Assisted Suicide: Legal In Montana
For months I have been expecting the Montana Supreme Court to make assisted suicide legal. On Thursday December 31, this became reality. Montana is now the third state to allow doctor assisted suicide. What exactly does this ruling mean for residents of Montana? Well, doctors can prescribe the required drugs to mentally competent, terminally ill people without worrying about being prosecuted. This may sound reasonable as no one wants a person who is terminally ill to suffer when death is inevitable. But life and deciding who is terminally ill is not always simple or clearly defined. For instance, ALS is a terminal condition and any person diagnosed with this condition will be devastated. This is a reasonable reaction. But this same person can live many years and in some cases be alive decades later (this is not the norm but possible). Here is my concern: what happens if this person lives in Montana? What options will be discussed when ALS is the diagnosis? Will the focus be on loss alone, the slow deterioration of one's physical ability? Will a seemingly good hearted and caring physician state that assisted suicide is a viable option? This will be perfectly legal and a deadly choice some people may choose. The implications do not end with this one example nor are they limited to ALS. Let me turn to something I know a lot about--paralysis. What will happen to an athletically fit young man in his early 20s who experiences a high level spinal cord injury. If he lives in Montana will assisted suicide be a treatment option? I can readily imagine it would be easy to sway such a man to end his life shortly after such an injury. No one wants to be paralyzed, myself included. What if the post spinal cord injury portrait painted by the attending physician is hopelessly bleak? This is not far fetched. Indeed, such an approach was the norm when I was paralyzed. It was assumed high level quadriplegics could have no "quality of life". This assumption was wrong and based not on science or medical facts but a cultural belief that death was preferable to a severe disability like quadriplegia.
There is not much positive that can be found in the Montana Supreme Court decision. The one silver lining is that the court did not determine whether the Montana Constitution guarantees the right to an assisted suicide. Thus the court did not go as far as District Judge Dorothy McCarter had in 2008. Instead, the court ruled that "We find nothing in Montana Supreme Court precedent or Montana statues indicating that physician aid in dying is against public policy". Why does this not make me feel any better or less worried? Let's not mince words here: the Montana Supreme Court ruling represents yet another legal victory for powerful and well funded right to die groups like Compassion and Choices. This group in particular is adept at swaying the media and those unfamiliar with assisted suicide. Hence, comments such as those found in the New York Times that appear reasonable are in fact misleading. For example, the legal director of Compassion and Choices is quoted: "Montanans trapped in an unbearable dying process deserve, and will now have, this end-of-life choice". Again, on the surface this sounds reasonable but ignores the fact hospice care is available in every state. Nor does such a statement consider the gray areas I have already mentioned where bias against people with a disability rears it ugly head in a myriad of different ways.
Readers of this blog will know an ever present refrain of mine is nuanced debate--we need a nuanced debate about disability. Sadly, nuance is utterly absent in most cases where disability is discussed and this deeply troubles me. Yet when it comes to the discussion of assisted suicide the situation is far worse. Both sides of the debate, those for and those against assisted suicide, do nothing but scream at one another. Nuance is utterly absent, views are deeply entrenched and unwavering. In addition, strange political bedfellows exist such as conservative pro lifers siding with liberal disability rights activists. In part this is why I limit my comments about assisted suicide. I sincerely doubt I can sway people one way or another and restrict my observations to how assisted suicide can impact the lives of those with or who may incur a disability. This approach does not make me a popular guy. I can live with this but I remain deeply frustrated. But I would like to believe my frustration comes out in a constructive manner. In contrast the frustrated words of others such as Mark Mostert of the Institute for the Study of Disability and Bioethics (ISDB) leave much to be desired. He wrote: "My greatest frustration? That people with disabilities are so (forgive me) brain-dead in not seeing how they will soon be in the sights of the pro-death lobby. In my more perverse moments, I can't wait to say I told you so. More rationally, if more people with disabilities don't stand up along with those of us who are trying to get the word out, then our future is very dark indeed". I do not share Mostert's deep pessimism and regret his choice of words. They are alarmist and counter productive. Obviously I am quite adept at voicing my opinion as are millions of other so called "brain-dead" people with a disability. Thus I may accept his support but wish he could frame it in a nuanced manner.
There is not much positive that can be found in the Montana Supreme Court decision. The one silver lining is that the court did not determine whether the Montana Constitution guarantees the right to an assisted suicide. Thus the court did not go as far as District Judge Dorothy McCarter had in 2008. Instead, the court ruled that "We find nothing in Montana Supreme Court precedent or Montana statues indicating that physician aid in dying is against public policy". Why does this not make me feel any better or less worried? Let's not mince words here: the Montana Supreme Court ruling represents yet another legal victory for powerful and well funded right to die groups like Compassion and Choices. This group in particular is adept at swaying the media and those unfamiliar with assisted suicide. Hence, comments such as those found in the New York Times that appear reasonable are in fact misleading. For example, the legal director of Compassion and Choices is quoted: "Montanans trapped in an unbearable dying process deserve, and will now have, this end-of-life choice". Again, on the surface this sounds reasonable but ignores the fact hospice care is available in every state. Nor does such a statement consider the gray areas I have already mentioned where bias against people with a disability rears it ugly head in a myriad of different ways.
Readers of this blog will know an ever present refrain of mine is nuanced debate--we need a nuanced debate about disability. Sadly, nuance is utterly absent in most cases where disability is discussed and this deeply troubles me. Yet when it comes to the discussion of assisted suicide the situation is far worse. Both sides of the debate, those for and those against assisted suicide, do nothing but scream at one another. Nuance is utterly absent, views are deeply entrenched and unwavering. In addition, strange political bedfellows exist such as conservative pro lifers siding with liberal disability rights activists. In part this is why I limit my comments about assisted suicide. I sincerely doubt I can sway people one way or another and restrict my observations to how assisted suicide can impact the lives of those with or who may incur a disability. This approach does not make me a popular guy. I can live with this but I remain deeply frustrated. But I would like to believe my frustration comes out in a constructive manner. In contrast the frustrated words of others such as Mark Mostert of the Institute for the Study of Disability and Bioethics (ISDB) leave much to be desired. He wrote: "My greatest frustration? That people with disabilities are so (forgive me) brain-dead in not seeing how they will soon be in the sights of the pro-death lobby. In my more perverse moments, I can't wait to say I told you so. More rationally, if more people with disabilities don't stand up along with those of us who are trying to get the word out, then our future is very dark indeed". I do not share Mostert's deep pessimism and regret his choice of words. They are alarmist and counter productive. Obviously I am quite adept at voicing my opinion as are millions of other so called "brain-dead" people with a disability. Thus I may accept his support but wish he could frame it in a nuanced manner.
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