I can be remarkably stupid. Once upon a time I thought bioethicists and disability rights advocates would form or could form a powerful alliance. Boy, was I wrong! The reality is a giant divide, a gulf as wide and deep as the Grand Canyon, separates bioethicists and disability rights activists. This divide and much grumbling is well known in the disability rights community. Some even think bioethicists spend their time thinking of new and creative ways to either kill or at least subvert the civil rights of people with disabilities. I for one never subscribed to this line of thought. I thought people like Peter Singer gave the field a bad name and that in reality most people in bioethics were drawn to the impossible conundrums that arise in the medical sciences. On the other end of this divide, bioethicists work in a narrow field and garner less respect than one would expect. While bioethicists may work and be associated with prestigious institutions they rely on limited resources when compared to other fields in the medical sciences. Bioethicists also tend to be insular and one field they struggle to deal with is disability studies. Simply put, bioethicists do not like disability activists and some, certainly not all, do not respect disability studies. For the better part of this year I have thought that there must be a way to broach the divide between disability activists and bioethicists. I have thought long and hard on getting leaders in both fields locked into a room over the course of a day and work out their differences. In my imagination I would act as a mediator, getting both groups to be mutually respectful and work together to protect and advocate for the civi rights of people with a disability. This is a great idea but I fear wishful thinking.
I have reluctantly concluded getting bioethicists and disability advocates together might be pure folly. Part of the problem is a great deal of animosity exists in the disability community and among disability activists. Simply put, bioethicists for better or worse are widely disliked. A cursory glance at disability history reveals a disturbing legacy within bioethics and the medical science.--Eugenics and forced as well as coerced institutionalization spring to mind. This history is not taught nor acknowledged. Indeed, many in the medical sciences would like to sweep such historical events under the carpet while disability activists and scholars seek to bring such past abuses to light. The result is an inherent tension between the two groups that is exasperated by certain issues. Here I refer to assisted suicide, prenatal testing, and neonatal treatment. Since I have been stuck in bed I have read about these three issues at great length. Some of what I read is deeply distressing. One article in particular has led me to conclude it may not be possible to get bioethicists and disability activists together. The article in question, "A Life Worth Giving? The Threshold for Permissible Withdrawal of Life Support From Disabled Born Infants" published by the American Journal of Bioethics by Dominic Wilkinson is troubling. In no way do I call into question Wilkinson's motives. He is a specialist in new born intensive care and medical ethics. I do not envy his position--on a regular basis he decides if a newborn infant will live or die. I am sure such decisions are not made lightly and involve a great deal of angst for doctors and parents. However, I do call into question his assertion that "it is justifiable in some circumstances for parents and doctors to decide to allow infants to die even though the infant's life would be worth living". Wilkinson calls for a "threshold view treatment"--that is treatment may be withdrawn if the infants "well-being is below a threshold that is close to, but above the zero-point of well-being". And take a wild guess whose life is not worth living? Yes, we people with disabilities. Wilkinson believes "it would be permissible to withdraw life support from newborn infants with predicted severe cognitive deficits... congenital brain malformations such as lissencephaly or infants with trisomy 13 or 18. It would also potentially include infants with overwhelming physical impairments such as spastic quadriplegic cerebral palsy, severe spina bifida, or muscular atrophy". Why are such people, human beings, quality of life called into question? Wilkinson does not address this. In conclusion he writes the threshold view "would not lead to the withdrawal of life support from infants with a reasonable chance of a good life". But what exactly does that so-called "good life" life mean". I know many people with severe disabilities that lead what I would consider a "good life". I know people with severe cognitive disabilities that lead a "good life". Perhaps Wilkinson should visit an independent living center or better yet an adaptive sports program where people with disabilities are not only content but quite happy. If these words are not disturbing enough, I was taken aback to read the last paragraph in which Wilkinson wrote "It accords with a sense, (that I suspect many parents and neonatalogists share), that for us to be obligated to save a life it must not only be a life worth living, it must also be a life worth giving". No wonder people in the disability community take a dim view of bioethicists. This last statement has kept me up at night. No wonder I fear going to a hospital--people, doctors, may independently determine my life is not worth living. No wonder the divide between bioethicists and disability rights activists is so expansive. I think we, as in all humans, have a right to live. I for one do not want nor do I trust another person to determine when and if my life is worth living. Hopefully I will make that determination myself and if I cannot I that decision will rest with my son. I just hope he does not consult or seek the advice of a bioethicist.
Wound Care: A Spectacular Day
Friday, November 19, 2010
Yesterday almost made me cry. I saw the wound care team and the doctor has permitted me to sit up in my wheelchair as needed. Yes, I still have two wounds, one small the other not so small. The more serious wound has under mining that they think is caused by constant bending in my hip. Asked how to reduce bending the hip I replied "sitting up". Well, let's try that was the reply. I was too stunned to reply and a host of restrictions were added to this glorious news--reduce transfers to a bare minimum, no trips out to the store, relieve pressure every five minutes etc. All this is fine with me and common sense. I do after all have two wounds. The odd thing is I do not know what to do with myself. I slept late and was literally afraid to get up. I was afraid of transferring from bed to wheelchair. Could I do it alone? Of course I can but no one was present to spot me. What I am feeling most now is fatigue and soreness. My arms and shoulders ache just from being up. It is the most wonderful ache I have ever felt.
It is impossible to relate how happy I am. I have my life back--I am alone! My black lab Kate is even happier, she wants to play. play, play. I can cook, clean, and be independent at home. Although this is nothing short of awesome one thought has been constant in the last 24 hours and brings me to tears--I am forever thankful to my family for sacrificing on my behalf. They provided care for me in a way no other people ever could. They did not do this for a day or two but for weeks on end without reprieve. Not once did a family member ever complain or make me feel like an imposition. Not once did anyone get mad at me even though there were times I was a royal pain the ass. When I needed space, I was given it. When I needed to voice my concerns, they listened. In short, each and every family member was as close to perfect as we humans can be. I suspect they would be mad at me for writing this because I must say I owe them all a great debt. Without them I would have ended up in a nursing home, an institutional setting that would have crushed my spirit. Instead, I was empowered at home--empowered by the love of my family. Today, I celebrate not for myself but for them--they made this happy day possible.
What have I done since I have gotten up? Well, I reorganize my kitchen, a job I really enjoyed. I cooked an early lunch to celebrate and read a book outside. I played with my dog. These basics don't sound like much but they made my spirits soar. Just think in another month I may even get to drive to the store. What I need to be very aware of is not to over do things. I am eager to split and carry fire wood and do major outdoor chores. But that will need to wait. For now sitting is more than enough. And not sitting too much or too little. I will seek a good balance and rely on wound care to determine that I am still making progress. I have come to far thanks to my family to have a set back. So my joy though heart felt is tempered by reality--I must not over do and be stupid. Event with this proviso I cannot help but be overjoyed.
It is impossible to relate how happy I am. I have my life back--I am alone! My black lab Kate is even happier, she wants to play. play, play. I can cook, clean, and be independent at home. Although this is nothing short of awesome one thought has been constant in the last 24 hours and brings me to tears--I am forever thankful to my family for sacrificing on my behalf. They provided care for me in a way no other people ever could. They did not do this for a day or two but for weeks on end without reprieve. Not once did a family member ever complain or make me feel like an imposition. Not once did anyone get mad at me even though there were times I was a royal pain the ass. When I needed space, I was given it. When I needed to voice my concerns, they listened. In short, each and every family member was as close to perfect as we humans can be. I suspect they would be mad at me for writing this because I must say I owe them all a great debt. Without them I would have ended up in a nursing home, an institutional setting that would have crushed my spirit. Instead, I was empowered at home--empowered by the love of my family. Today, I celebrate not for myself but for them--they made this happy day possible.
What have I done since I have gotten up? Well, I reorganize my kitchen, a job I really enjoyed. I cooked an early lunch to celebrate and read a book outside. I played with my dog. These basics don't sound like much but they made my spirits soar. Just think in another month I may even get to drive to the store. What I need to be very aware of is not to over do things. I am eager to split and carry fire wood and do major outdoor chores. But that will need to wait. For now sitting is more than enough. And not sitting too much or too little. I will seek a good balance and rely on wound care to determine that I am still making progress. I have come to far thanks to my family to have a set back. So my joy though heart felt is tempered by reality--I must not over do and be stupid. Event with this proviso I cannot help but be overjoyed.
Baxter and Assisted Suicide: A Nuanced Conclusion
Sunday, November 14, 2010
Last January in discussing the Baxter case in Montana I argued that nuance is utterly absent from the debate about assisted suicide. Indeed, I find the entire tenor of most discussions about assisted suicide deeply depressing. I have come to the dismal conclusion it is not possible to sway people--that is views with regard to assisted suicide are too entrenched to ever substantially change. The result is we get two camps or schools of thought--those for and those against assisted suicide. I am opposed to legalizing assisted suicide as I believe it sets a dangerous president for at risk populations: elderly, disabled and terminally ill. Instead I wish we could develop a vibrant and widely accepted hospice movement throughout American society. Death is not the enemy, rather it is part of life. It is an experience we will all come to at some point. Of course this is easy for me to write as I am not facing imminent death and as such this is an abstract discussion. But why I wonder do so many push for laws that I think are not necessary, even dangerous? This is where that absent nuanced debate is needed and remarkably I came cross a fascinating quote that has kept me thinking for the past few days. Here I refer to John Robinson, an associate professor of law at the University of Notre Dame. In "Baxter and the Return of Physician Assisted Suicide published in the Hastings Center Report he wrote:
We should encourage states to see that the state neutrality toward suicide built into the Baxter decision is both illusory and dangerous. If we accept that death is, at some lvel, terrifying, and that the institutional extinction of human life is, at some level, even more terrifying, then we should not seek to facilitate suicide by insulating doctors who assist it from criminal or civil liability. We should seek instead to create in our communities values, practices, and institutions that will assure each of us the sort of care--familial, social, and medical--that will make the resort to assistance in suicide unnecessary. And we should go one step further, encouraging the state, through its public policy, to reduce to a minimum the conditions that make suicide, with or without a doctor's assistance, appear to be a a choice worthy of consideration".
When I read these words I thought of the mother daughter suicide that took place in White Plains, New York. To me that was a social and familial tragedy that could and should have been prevented. I hold American society responsible for that failure and by extension its people, including me. Just as I argue we need a social revolution to change the perception of disability we need a similar revolution when it comes to assisted suicide.
We should encourage states to see that the state neutrality toward suicide built into the Baxter decision is both illusory and dangerous. If we accept that death is, at some lvel, terrifying, and that the institutional extinction of human life is, at some level, even more terrifying, then we should not seek to facilitate suicide by insulating doctors who assist it from criminal or civil liability. We should seek instead to create in our communities values, practices, and institutions that will assure each of us the sort of care--familial, social, and medical--that will make the resort to assistance in suicide unnecessary. And we should go one step further, encouraging the state, through its public policy, to reduce to a minimum the conditions that make suicide, with or without a doctor's assistance, appear to be a a choice worthy of consideration".
When I read these words I thought of the mother daughter suicide that took place in White Plains, New York. To me that was a social and familial tragedy that could and should have been prevented. I hold American society responsible for that failure and by extension its people, including me. Just as I argue we need a social revolution to change the perception of disability we need a similar revolution when it comes to assisted suicide.
Assisted Suicide and Autonomy
Thursday, November 11, 2010
About once or twice a year a complete stranger will utterly shock me. One theme of such unwanted statements made directly to me involve the belief that I would be better off dead than alive using a wheelchair. Hard to imagine but some people freely share this sentiment with me. Last Spring for instance I was eating a slice of pizza at my favorite place and a man looked at me as he was walking by and stated "I would rather be dead than use a wheelchair like you". After this endearing statement the man in question simply walked out of the restaurant. Sadly, this man has company--too much in fact. Is it rare for a person to make such a rude statement? Thankfully yes but that does not mean the notion of "better off dead than disabled" does not exist. In the "olden days" as my son would say when I was paralyzed people with high cervical injuries that would require a respirator to survive often died when "nature was allowed to takes its course". The thought was that a life on a ventilator was not worth living. Today many respirator dependent quadriplegics survive and thrive--they lead full and rich lives. In fact there are so many that space precludes me from naming some of the more well-known people.
When it comes to disability fear, like it or not, is major variable. No one wants to have a disability and some, certainly not all, fear disability. I don't understand this fear but my lack of understanding does not negate its existence. Surely part of this fear is the loss of autonomy and control over one's body. Things we as humans take for granted are lost or at minimum change dramatically. I cannot walk and as a result use a wheelchair. I see my wheelchair use as nothing more and nothing less than an alternate means of getting around. However, daily activities do take longer--dressing, showering, getting in and out of the car etc. The big loss to me is not how I do things but rather the time involved. I lose much time daily doing stupid ordinary stuff. People unfamiliar with disability don't get this point and instead see something "remarkable" about the ordinary. For some, again not all, the idea of having or worse yet acquiring a disability is feared. How these people wonder would I cope? At the core of this fear is the American glorification of independence and autonomy. I would rather be dead if I could not walk is not too far from I would rather be dead if I was cognitively impaired or dependent upon others. This notion in turn leads some to think assisted suicide makes sense--and on the surface it does. We humans should after all be able to live and die as we wish. But do our wishes, our dreams, ever match reality? In a word no. We do not get to pick and choose how we approach the end of our life. We do not get to pick and choose our parent. We are constrained by many factors in our lives--economic, social and political to mention but a few critically important variables. End of life issues are no different. Yes, we should control how we die but none of us really makes such a decision. Americans have medicalized death--it is perceived to be a failure when in fact it is an integral part of the life experience. And at the end of life who really makes the final decisions? In most cases it is a doctor or family members and in some cases the person who will die. Those dying and those busy living often state autonomy is valued--that without personal autonomy life is not worth living. Well, how autonomous are we really? Autonomy is an illusion--we are all dependent to certain degree. No amount of "safe guards" will ever change that--including the push to make assisted suicide legal. For instance, he Oregon Death with Dignity Act requires that a person" be: 1) 18 years of age or older, 2) a resident of Oregon, 3) capable of making and communicating health care decisions for him/herself, and 4) diagnosed with a terminal illness that will lead to death within six (6) months. It is up to the attending physician to determine whether these criteria have been met."
The above sounds very reasonable--logical in fact. Superficially, yes. But the Oregon law, held up as a paragon of law making, has its fair share of problems. As one familiar with the medical establishment, I am all too aware of how subjective any given diagnosis can be. Deciding who and is not terminal is equally subjective. ALS for instance is an invariably fatal condition. Many with ALS die rather than depend upon a respirator. If they chose to be respirator dependent they could in some cases significantly extend their lives. This is but one minor example. The greater concern is with what some are calling "doctor shopping". Terminal patients in Oregon are seeking out doctors and hospitals that will provide lethal prescriptions. As a result, on average a patient will only know their physician for a few weeks if that. In a fascinating paper published by a British organization, Living and Dying Well, Professor Onora O�Neill challenges the notion of autonomy discussed above. According to O'Neill the debate that is waged over assisted suicide is dominated by stereotypes--the terminal patient in unbearable pain being the archetype. The reality is far more complex--what toll does a dying relative take on the person's family and "loved ones". What is the economic impact on not just the person dying but their family members? Can the family provide the desired care? What about the impact a seemingly "hopeless case" has on doctors and those professionals charged with care? We do not live in a social vacuum--our lives and bodies affect others. I know for instance my mere presence is upsetting to some. Surely those dying experience something similar. The point O'Neil makes is worth serious consideration as states across this country consider copying Oregon's Death with Dignity Act. As anyone with an ounce of common sense will admit we live in a flawed world populated by flawed people--and here I include myself. Given this I think it behooves us to seriously consider O'Neill's words and conclusions. She wrote: �In a world of idealized, wholly autonomous patients, and of wholly selfless and compassionate families and professionals, legislation providing for assisted dying might, if ethically acceptable, not be risky. We do not live in that world, and I doubt whether we can draft legislation that is safe for human beings with their full variety of situations and dependence on one another�.
When it comes to disability fear, like it or not, is major variable. No one wants to have a disability and some, certainly not all, fear disability. I don't understand this fear but my lack of understanding does not negate its existence. Surely part of this fear is the loss of autonomy and control over one's body. Things we as humans take for granted are lost or at minimum change dramatically. I cannot walk and as a result use a wheelchair. I see my wheelchair use as nothing more and nothing less than an alternate means of getting around. However, daily activities do take longer--dressing, showering, getting in and out of the car etc. The big loss to me is not how I do things but rather the time involved. I lose much time daily doing stupid ordinary stuff. People unfamiliar with disability don't get this point and instead see something "remarkable" about the ordinary. For some, again not all, the idea of having or worse yet acquiring a disability is feared. How these people wonder would I cope? At the core of this fear is the American glorification of independence and autonomy. I would rather be dead if I could not walk is not too far from I would rather be dead if I was cognitively impaired or dependent upon others. This notion in turn leads some to think assisted suicide makes sense--and on the surface it does. We humans should after all be able to live and die as we wish. But do our wishes, our dreams, ever match reality? In a word no. We do not get to pick and choose how we approach the end of our life. We do not get to pick and choose our parent. We are constrained by many factors in our lives--economic, social and political to mention but a few critically important variables. End of life issues are no different. Yes, we should control how we die but none of us really makes such a decision. Americans have medicalized death--it is perceived to be a failure when in fact it is an integral part of the life experience. And at the end of life who really makes the final decisions? In most cases it is a doctor or family members and in some cases the person who will die. Those dying and those busy living often state autonomy is valued--that without personal autonomy life is not worth living. Well, how autonomous are we really? Autonomy is an illusion--we are all dependent to certain degree. No amount of "safe guards" will ever change that--including the push to make assisted suicide legal. For instance, he Oregon Death with Dignity Act requires that a person" be: 1) 18 years of age or older, 2) a resident of Oregon, 3) capable of making and communicating health care decisions for him/herself, and 4) diagnosed with a terminal illness that will lead to death within six (6) months. It is up to the attending physician to determine whether these criteria have been met."
The above sounds very reasonable--logical in fact. Superficially, yes. But the Oregon law, held up as a paragon of law making, has its fair share of problems. As one familiar with the medical establishment, I am all too aware of how subjective any given diagnosis can be. Deciding who and is not terminal is equally subjective. ALS for instance is an invariably fatal condition. Many with ALS die rather than depend upon a respirator. If they chose to be respirator dependent they could in some cases significantly extend their lives. This is but one minor example. The greater concern is with what some are calling "doctor shopping". Terminal patients in Oregon are seeking out doctors and hospitals that will provide lethal prescriptions. As a result, on average a patient will only know their physician for a few weeks if that. In a fascinating paper published by a British organization, Living and Dying Well, Professor Onora O�Neill challenges the notion of autonomy discussed above. According to O'Neill the debate that is waged over assisted suicide is dominated by stereotypes--the terminal patient in unbearable pain being the archetype. The reality is far more complex--what toll does a dying relative take on the person's family and "loved ones". What is the economic impact on not just the person dying but their family members? Can the family provide the desired care? What about the impact a seemingly "hopeless case" has on doctors and those professionals charged with care? We do not live in a social vacuum--our lives and bodies affect others. I know for instance my mere presence is upsetting to some. Surely those dying experience something similar. The point O'Neil makes is worth serious consideration as states across this country consider copying Oregon's Death with Dignity Act. As anyone with an ounce of common sense will admit we live in a flawed world populated by flawed people--and here I include myself. Given this I think it behooves us to seriously consider O'Neill's words and conclusions. She wrote: �In a world of idealized, wholly autonomous patients, and of wholly selfless and compassionate families and professionals, legislation providing for assisted dying might, if ethically acceptable, not be risky. We do not live in that world, and I doubt whether we can draft legislation that is safe for human beings with their full variety of situations and dependence on one another�.
Ashley Treatment in the Hastings Center Report
Wednesday, November 10, 2010
In the November/December issue of the Hastings Center Report growth attenuation and the so called Ashley Treatment is discussed. A subscription is required to read the feature article entitled "Navigating Growth Attenuation in Children with Profound Disabilities". However, the responses, excluding a commentary by Alice Dreger, can be accessed for free. I strongly urge readers to visit the Hastings Center website and read the most recent report. I have always been intrigued by the Hastings Center. It is a bioethics think tank that produces first rate scholarship. I do not always agree with what they publish--in fact I have strongly disagreed with some articles they have printed. However, even in disagreement I never questioned the academic integrity of what is produced. In addition, I have found such disagreement fruitful as it forced me to hone my views in response. Thus I am quite happy to see the work produced by the "Seattle Growth Attenuation and Ethics Working Group" in Seattle appear in the Hastings Center Report. It is my hope that the feature article and the responses will prompt a more nuanced debate about growth attenuation. To date, those for and opposed to growth attenuation have utterly failed to open a reasoned debate. While I am firmly opposed to the Ashley Treatment, I am willing to listen to its advocates. I only wish the same courtesy was extended to me and particularly those in what some people such as Norm Fost derisively refer to as the disability community.
The Hastings Center Report has published the following:
Feature article (subscription required)
Navigating Growth Attenuation in Children with Profound Disabilities: Children's Interests, Family Decision-Making, and Community Concerns
Bejamin S. Wilfond, Paul Steven Miller, Carolyn Korfiatis, Douglas S. Diekema, Denise M. Dudzinski, Sara Goering, and the Seattle Growth Attenuation and Ethics Working Group
Responses (free):
Offense to Third Parties?
Norman Fost
Discrimination against Children with Cognitive Impairments?
Eva Feder Kittay
Against Fixing a Child�A Parent's View
Sue Swenson
In Support of the Ashley Treatment�A Parent's View
Sandy Walker
Another Voice (subscription)
Attenuated Thoughts
Alice Dreger
I will leave it up to the reader to assess the individual contributions above. What I will do however is briefly quote each response and my reaction.
First, the words of Norm Fost:
"We [the working group] heard about disagreement and distress because a caring set of parents, with consultation from competent physicians and the support of an experienced ethics committee, pursued a treatment plan that offended the personal beliefs of some individuals and groups about the treatment of people with disabilities."
Fost is correct, the Ashley Treatment" offended many people with and without disabilities. But he utterly misses the point that Ashley X civil rights were violated. This is not an opinion, this is a statement of fact, a legal fact in the Sate of Washington. What Fost objects to the most is "third party" intrusion. This too is not a tenable position.
Second, the words of Sandy Walker:
When Ashley�s story became public, I was surprised by the reaction of those who identify themselves as �advocates� of persons with disabilities and their families. They spoke of the �perspective of the disability community,� as though Ashley and her family were not a part of it. I felt disenfranchised by the very organizations and individuals that were put into place to protect Jessica and our family. I also found that many of those speaking out against growth attenuation did not understand the enormous physical implications and limitations of children as involved as Jessica.
This is profoundly disturbing comment. We, myself included, in the disability rights community have failed this woman and her family. This cannot be tolerated. While I do not have a child with a disability, I certainly understand the discrimination children and adults with cognitive deficits encounter is far more pronounced than what I experience. This is inherently wrong and we in the disability community much do more to reach these families. They should never feel so disenfranchised.
Third, the words of Sue Swenson:
We would never allow our son to be placed in an institution. Institutional placement of children or adults with profound disabilities�being shut away from the community, rather than engaged with it�is no longer considered an option in civilized places. Fortunately, family support and home- and community-based supports for adults offer modern alternatives. Family support�services whose aim is to help families nurture and enjoy their disabled child at home�helped us learn to let go and gave us information about raising a severely disabled child: how to position him so he could participate in a broad range of activities, how to transfer him without lifting, how to support his mobility and find useful equipment, how to include him in everything, how to figure out what he wanted, how to think about his rights.
I can only state my categorical agreement with the above.
Fourth the, the words of Eva Kittay:
The Seattle Growth Attenuation and Ethics Working Group settled on the compromise that growth attenuation should be limited to severely cognitively disabled and nonambulatory children. I respectfully disagree. I do not believe that growth attenuation is ethically or medically appropriate, even when limited to children with profound developmental and intellectual impairments.
The compromise position rests on the assumption that the constraint will avoid many of its possible abuses. The problem is that the limitation is itself already an abuse. If growth attenuation should not be done on children without these impairments, then it should not be done on any children. To do otherwise amounts to discrimination.
Forceful words eloquently and wonderfully stated. Kittay's response is sobering. A class of people has been set apart and are potentially subject to a "treatment" that would be deemed objectionable if they were ambulatory or did not have a cognitive deficit. What does this say about the way our society views such people?
What to make of all this? I think something productive can come out of what the Hastings Center has done. I suggest the center consider organizing a one day conference on the Ashley Treatment. I would use the prestige of the Hastings Center to force people with entrenched views to come together in a civil fashion. I think people like Douglas Diekema and Norm Fost need to listen to their fiercest critics in the disability rights community who they have ignored or dismissed out of hand. In return disability rights advocates must treat these men with respect regardless of our opposition. The Hastings Center Report is a step in the right direction but much works needs to be done. Alice Dreger grimy noted: "I was invited to join the Seattle Growth Attenuation and Ethics Working Group�collective author of the lead article in this issue of the Report�but I begged off, claiming I had too many other things on my plate. True, but the bigger reason for avoiding the project was my suspicion that I would be torn asunder by the complexity of growth attenuation for persons with disabilities. Reading the essays from the group reveals that instinct to have been dead-on." Rather than be "torn asunder" I think it is in our collective best interest to work together.
The Hastings Center Report has published the following:
Feature article (subscription required)
Navigating Growth Attenuation in Children with Profound Disabilities: Children's Interests, Family Decision-Making, and Community Concerns
Bejamin S. Wilfond, Paul Steven Miller, Carolyn Korfiatis, Douglas S. Diekema, Denise M. Dudzinski, Sara Goering, and the Seattle Growth Attenuation and Ethics Working Group
Responses (free):
Offense to Third Parties?
Norman Fost
Discrimination against Children with Cognitive Impairments?
Eva Feder Kittay
Against Fixing a Child�A Parent's View
Sue Swenson
In Support of the Ashley Treatment�A Parent's View
Sandy Walker
Another Voice (subscription)
Attenuated Thoughts
Alice Dreger
I will leave it up to the reader to assess the individual contributions above. What I will do however is briefly quote each response and my reaction.
First, the words of Norm Fost:
"We [the working group] heard about disagreement and distress because a caring set of parents, with consultation from competent physicians and the support of an experienced ethics committee, pursued a treatment plan that offended the personal beliefs of some individuals and groups about the treatment of people with disabilities."
Fost is correct, the Ashley Treatment" offended many people with and without disabilities. But he utterly misses the point that Ashley X civil rights were violated. This is not an opinion, this is a statement of fact, a legal fact in the Sate of Washington. What Fost objects to the most is "third party" intrusion. This too is not a tenable position.
Second, the words of Sandy Walker:
When Ashley�s story became public, I was surprised by the reaction of those who identify themselves as �advocates� of persons with disabilities and their families. They spoke of the �perspective of the disability community,� as though Ashley and her family were not a part of it. I felt disenfranchised by the very organizations and individuals that were put into place to protect Jessica and our family. I also found that many of those speaking out against growth attenuation did not understand the enormous physical implications and limitations of children as involved as Jessica.
This is profoundly disturbing comment. We, myself included, in the disability rights community have failed this woman and her family. This cannot be tolerated. While I do not have a child with a disability, I certainly understand the discrimination children and adults with cognitive deficits encounter is far more pronounced than what I experience. This is inherently wrong and we in the disability community much do more to reach these families. They should never feel so disenfranchised.
Third, the words of Sue Swenson:
We would never allow our son to be placed in an institution. Institutional placement of children or adults with profound disabilities�being shut away from the community, rather than engaged with it�is no longer considered an option in civilized places. Fortunately, family support and home- and community-based supports for adults offer modern alternatives. Family support�services whose aim is to help families nurture and enjoy their disabled child at home�helped us learn to let go and gave us information about raising a severely disabled child: how to position him so he could participate in a broad range of activities, how to transfer him without lifting, how to support his mobility and find useful equipment, how to include him in everything, how to figure out what he wanted, how to think about his rights.
I can only state my categorical agreement with the above.
Fourth the, the words of Eva Kittay:
The Seattle Growth Attenuation and Ethics Working Group settled on the compromise that growth attenuation should be limited to severely cognitively disabled and nonambulatory children. I respectfully disagree. I do not believe that growth attenuation is ethically or medically appropriate, even when limited to children with profound developmental and intellectual impairments.
The compromise position rests on the assumption that the constraint will avoid many of its possible abuses. The problem is that the limitation is itself already an abuse. If growth attenuation should not be done on children without these impairments, then it should not be done on any children. To do otherwise amounts to discrimination.
Forceful words eloquently and wonderfully stated. Kittay's response is sobering. A class of people has been set apart and are potentially subject to a "treatment" that would be deemed objectionable if they were ambulatory or did not have a cognitive deficit. What does this say about the way our society views such people?
What to make of all this? I think something productive can come out of what the Hastings Center has done. I suggest the center consider organizing a one day conference on the Ashley Treatment. I would use the prestige of the Hastings Center to force people with entrenched views to come together in a civil fashion. I think people like Douglas Diekema and Norm Fost need to listen to their fiercest critics in the disability rights community who they have ignored or dismissed out of hand. In return disability rights advocates must treat these men with respect regardless of our opposition. The Hastings Center Report is a step in the right direction but much works needs to be done. Alice Dreger grimy noted: "I was invited to join the Seattle Growth Attenuation and Ethics Working Group�collective author of the lead article in this issue of the Report�but I begged off, claiming I had too many other things on my plate. True, but the bigger reason for avoiding the project was my suspicion that I would be torn asunder by the complexity of growth attenuation for persons with disabilities. Reading the essays from the group reveals that instinct to have been dead-on." Rather than be "torn asunder" I think it is in our collective best interest to work together.
Image Problems Abound
Friday, November 5, 2010
One of my favorite magazines to like and dislike at the same time is New Mobility. A speciality publication, New Mobility is about people with disabilities and how they lead their lives. It is filled with terrible ads designed to separate people with disabilities from their money. Yes, you can learn about the latest about car adaptations, wheelchairs for sale, catheters, and so called restorative therapies. Despite my cranky views of the ads sometime the content is of interest. I regularly read the "Bully Pulpit", written by Tim Gilmer, the editor, and columnist Mike Ervin. Ervin often gives me a chuckle and this month he made me laugh and think with his column "ADA Fantasy". Ervin wrote:
"As I sat on the South Lawn of the White House 20 years ago and watched President George H. W. Bush sign the Americans with Disabilities Act, I was bursting with idealistic optimism. I dreamed the ADA would soon revolutionize the employment situation for people like me, radically transform our relationship with nondisabled Americans and create previously unimaginable disability utopia. But sweet Jesus was I wrong. The ADA hasn't brought about anything remotely resembling what I dared envision"
Ervin is deadly correct: the ADA has not in any way created or fostered the social revolution desperately needed for real social equality. The ADA was the culmination of 40 years of legislative initiative that has placed the law firmly on the side of people with disabilities. Those laws are widely ignored and have no social support. Sadly, the ADA is grossly misunderstood and poorly enforced. I have spent years wondering why the social revolution envisioned by Ervin, myself, and countless other advocates and lawmakers has not taken place. Over the last few weeks given my inability to get out of my own living room my schedule has changed. Part of that change is that I watch more television than usual. A theme of diverse shows I have been exposed to reveals a basic truth: we people with a disability have a giant problem with our image. Seemingly every show and news program portrays disability in a negative light. Any newly paralyzed person makes for great drama and tragedy. Hushed tones and sad faces are aplenty when such an accident occurs. Special educators are lauded for their super human efforts on behalf of their crippled students. I do not mean to belittle the efforts of such teachers but rather point out the students they teach have as much value as a student without a disability. Worse yet are charity stories--how a community comes together to raise money for a person with a disability so they can buy a wheelchair or access basic health care. Again, this is fine but lost in the tear jerking emotion is the question why: why does the community need raise money for a new wheelchair or why does the person in question not earn enough to afford health insurance. Another theme with regard to disability I have observed regards assisted suicide. When the issue comes up invariably a person with a disability is used to either promote or highlight why suicide should be legal. The not so subtle message is disability is a fate worse than death.
What is the point of the above observations? Until these images and ultimately demeaning stories are vanquished no social progress can be made. We need to see stories about the ADA being enforced with vigorous community and business support. We need to see universal social outrage when a building is not accessible, an elevator broken, or an insurance company deny needed adaptive equipment. We need to see people get pissed of when access is the first item cut out of budgets. We need to see a nationwide effort to employ people with a disability--afterall 70% of us are unemployed, a statistic that has not changed in 20 years. We need mass transportation systems that are accessible and not accessible in name only. We need to teach children separate in terms of disability is inherently unequal--a foundation of secondary school education when it comes to racial equality. None of this will happen regardless of what the law states without social support. And by social support I mean the social revolution that the ADA failed to create. Social outrage, revolution--that utopia that Ervin, myself and others have been dreaming of for over 20 years.
"As I sat on the South Lawn of the White House 20 years ago and watched President George H. W. Bush sign the Americans with Disabilities Act, I was bursting with idealistic optimism. I dreamed the ADA would soon revolutionize the employment situation for people like me, radically transform our relationship with nondisabled Americans and create previously unimaginable disability utopia. But sweet Jesus was I wrong. The ADA hasn't brought about anything remotely resembling what I dared envision"
Ervin is deadly correct: the ADA has not in any way created or fostered the social revolution desperately needed for real social equality. The ADA was the culmination of 40 years of legislative initiative that has placed the law firmly on the side of people with disabilities. Those laws are widely ignored and have no social support. Sadly, the ADA is grossly misunderstood and poorly enforced. I have spent years wondering why the social revolution envisioned by Ervin, myself, and countless other advocates and lawmakers has not taken place. Over the last few weeks given my inability to get out of my own living room my schedule has changed. Part of that change is that I watch more television than usual. A theme of diverse shows I have been exposed to reveals a basic truth: we people with a disability have a giant problem with our image. Seemingly every show and news program portrays disability in a negative light. Any newly paralyzed person makes for great drama and tragedy. Hushed tones and sad faces are aplenty when such an accident occurs. Special educators are lauded for their super human efforts on behalf of their crippled students. I do not mean to belittle the efforts of such teachers but rather point out the students they teach have as much value as a student without a disability. Worse yet are charity stories--how a community comes together to raise money for a person with a disability so they can buy a wheelchair or access basic health care. Again, this is fine but lost in the tear jerking emotion is the question why: why does the community need raise money for a new wheelchair or why does the person in question not earn enough to afford health insurance. Another theme with regard to disability I have observed regards assisted suicide. When the issue comes up invariably a person with a disability is used to either promote or highlight why suicide should be legal. The not so subtle message is disability is a fate worse than death.
What is the point of the above observations? Until these images and ultimately demeaning stories are vanquished no social progress can be made. We need to see stories about the ADA being enforced with vigorous community and business support. We need to see universal social outrage when a building is not accessible, an elevator broken, or an insurance company deny needed adaptive equipment. We need to see people get pissed of when access is the first item cut out of budgets. We need to see a nationwide effort to employ people with a disability--afterall 70% of us are unemployed, a statistic that has not changed in 20 years. We need mass transportation systems that are accessible and not accessible in name only. We need to teach children separate in terms of disability is inherently unequal--a foundation of secondary school education when it comes to racial equality. None of this will happen regardless of what the law states without social support. And by social support I mean the social revolution that the ADA failed to create. Social outrage, revolution--that utopia that Ervin, myself and others have been dreaming of for over 20 years.
Party Time
Thursday, November 4, 2010
I was at wound care today. Wow, I got a rave review. Yes, me for being the "poster boy of patient compliance". More importantly my skin got a rave review. The wound on my left has filled in. I no longer need the wound vacuum on my left. the only thing left to heal is the skin itself and that will fill in over time. The right too is better. The wound is almost filled in and the surrounding skin that was not looking great is much better. Being free of the wound vacuum on the left side is huge--a sure sign of significant progress and at a practical level I am no longer considered a "complex case". But the best news of all is the most mundane. I get to sit for 30 minutes a day. Yes, 30 glorious minutes will be spent in my wheelchair. I am beside myself with joy. Yet even this joy is tempered by reality. Today before went to wound care I looked at my house. All my furniture has been moved and I obviously knew that. But I went into my kitchen and was astounded. Nothing is where it once was. While I am not anal about organization I do like to know where stuff is. I now have no clue as to where a pot, pan, towel, sheet, or any other household item is located. In short pretend you went on vacation, a long one, and when you got back your entire house was rearranged--poorly. You may wonder what will I do when I get sit up? Clean and organize. Less cleaning but a massive restructuring of what once was. This is not sour grapes but rather an inevitable result of being dependent upon other people. Even seeing my messy house cannot spoil my wonderful mood. I am back baby--or well on my way! Time to celebrate with an extra beer tonight and the NY Ranger game. Gosh, life is pretty simple sometimes.
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