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”.
Thursday, November 11, 2010
Wednesday, November 10, 2010
Ashley Treatment in the Hastings Center Report
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.
Friday, November 5, 2010
Image Problems Abound
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.
Thursday, November 4, 2010
Party Time
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.
Wednesday, October 27, 2010
Stuck in the Doldrums
This is the eight week I have been unable to get out of bed. It has been six days since I was at wound care. I will be at wound care in eight days. A wound care specialist comes to my house Monday, Wednesday and Friday. I get up at 8 or 9AM. I have tea and fruit or breakfast, I eat lunch at noon, dinner at 6PM. This schedule is set in stone, deviations rare. I live in short an exceedingly dull, routine life. I despise this schedule and my temporary dependence. I feel as though my life is crushing to my spirit. I have trouble concentrating and overcome by a sense of hopelessness. I thus feel very much like a sailor from an era gone by that was stuck in the doldrums. No wind equaled no power. No power equaled no progress. I am likewise powerless though healing.
I suspect I am experiencing what a marathoner goes through half way through a race. I am guessing my wounds are at the half way point to being healed. I know the worst is behind me. My mind knows this but my heart is a different matter. My heart is filled with woe. Gosh, what a fucking baby I am. I am blessed with a great family and while I complain about insurance I did learn my entire hospital stay was covered--minus $160 for the television. Without this coverage I would be broke--hence health insurance in this country has become house and bankruptcy insurance. This knowledge does not make me feel better. I know I am the unusual paralyzed person. I have adequate insurance and enough work. I have a large family that provides economic help when needed, as in helping pay for uncovered medical expenses. These are luxuries few other people enjoy. How then do I have the right to feel the way I do? I simply don't. I tell this to myself again and again. Sometimes it helps and sometimes it does not. Today such a mantra is not working. Nothing is helping aside from posting these words on the internet. What a weird world we occupy. Here I am alone in front of a machine, utterly reliant on technology. Yet, what do I miss? Humanity, ah the dialectics of modern social life.
I suspect I am experiencing what a marathoner goes through half way through a race. I am guessing my wounds are at the half way point to being healed. I know the worst is behind me. My mind knows this but my heart is a different matter. My heart is filled with woe. Gosh, what a fucking baby I am. I am blessed with a great family and while I complain about insurance I did learn my entire hospital stay was covered--minus $160 for the television. Without this coverage I would be broke--hence health insurance in this country has become house and bankruptcy insurance. This knowledge does not make me feel better. I know I am the unusual paralyzed person. I have adequate insurance and enough work. I have a large family that provides economic help when needed, as in helping pay for uncovered medical expenses. These are luxuries few other people enjoy. How then do I have the right to feel the way I do? I simply don't. I tell this to myself again and again. Sometimes it helps and sometimes it does not. Today such a mantra is not working. Nothing is helping aside from posting these words on the internet. What a weird world we occupy. Here I am alone in front of a machine, utterly reliant on technology. Yet, what do I miss? Humanity, ah the dialectics of modern social life.
Friday, October 22, 2010
Assisted Suicide: Not an Abstract Issue
Two days ago I read a story in the local newspaper about the suicide of a mother and daughter. The people that died, Nejla Akkoc, age 71, and her daughter, Ayshe Akkoc, age 31, died in White Plains, N.Y. What makes this double suicide of interest to me is the fact the daughter, Ayshe had cerebral palsy. Based on news reports her mother was her primary care giver. The mother had also recently been diagnosed with terminal cancer. The apparent reason for the joint suicide is the mother was concerned about who would care for her daughter after her death. This is shocking, deeply distressing and provides ample evidence care giving for people with a disability is a profound and in some cases a life threatening problem. Given my current dependency, albeit temporary, on my family this story has been stuck in my mind. I have lost much sleep since I read the story. According to news reports, a suicide note was found by the police. Apparently emails were sent to family members and both bodies were discovered in the early morning by the police. The typed note, written by Nela Akkoc, the mother, described a lifetime of "hardships" and a belief a cure for cerebral palsy would never be found. My reaction to this why? Why focus on a cure? Why were the "hardships" of disability so overwhelming that it led to a double suicide? I surely do not know the details of the mother and daughter respective lives but I have no doubt their needless deaths are a social failure. Why was a mother driven to kill herself and her 31 year old daughter? Surely social services were available to support the daughter? Or are they available in this era of draconian budget cuts. And who is most likely to suffer when it comes to budget cuts? People without a voice, people like those with a disability.
How did these people die? With the help of the Final Exit Network or at least the literature they produce. It is not at all clear if the Akkocs sought out the "help" of the Final Exit Network. Newspaper reports mention the police found the book, The Final Exit, by Derek Humphrey published in 1992 and revised in 2005 to include the helium bag method of suicide--the way Akkoc's killed themselves. I for one would like to know exactly to what degree the Final Exit Network was or was not involved. Here I must have faith in the police department charged with investigating the deaths. News reports all state people familiar with the case consider it a sad case--disturbing at many levels. But aside from being sad I think the death of Ayshe Akkoc was preventable. I cannot help but speculate what would drive a healthy 31 year old person to end their life. Was she dependent upon her mother for all her needs? If so, why, why was she dependent upon a single care giver, an elderly person and her mother? In addition, who was the primary mover in the decision to end their lives? I assume the police are doing their best to sort all this out but know they can do nothing to prevent future people from ending their lives. And who is at risk? People with disabilities, elderly, and terminally ill. These populations can be found in every community in the country--and I firmly fit in the at risk category. What separates me from the Akkoc family is an utter rejection of ableist beliefs that dominate our society. That rejection also includes my family who are currently sacrificing much to be my sole caregivers. To them I owe a great debt and can relate to the angst Ayshe Akkoc must have faced knowing her mother and caregiver was terminally ill. Surely she must have been worried about her mother's fate as well as her own. Such a symbiotic relationship is both effective and dangerous. To me it highlights, we as a society must do far more to support people with disabilities.
What bothers me, keeps me awake at night, is the knowledge that I have the same legal rights as Ms. Akkoc did. What separates us was our response to disability based bias. I utterly reject dominate notions associated with disability as does my family and many friends. Sadly, for Ms. Akkoc into the void of social support we can find groups such as the Final Exit Network. Perhaps they were involved and perhaps they were not. But they did produce a book that is little more than a how to manual for suicide. I simply wish a how to caregiver manual of equal quality was available for people such as Ms. Akkoc that want to live and need basic care giving. Where I wonder is the support for people with disabilities? Based on my recent experiences, such support is grossly inadequate and the health car system we have is hopelessly flawed. Most reasonable people, aside from Tea Party extremists, accept the system is flawed. Despite multiple flaws, the Obama administration is trying to change the way health care and care giving is delivered but it is an uphill battle. For real change to take place we need the social demand. To date this is lacking and as a result I argue we need a social revolution. A revolution that acknowledges people like me and Ms. Akkoc have rights, rights that include care giving when needed.
How did these people die? With the help of the Final Exit Network or at least the literature they produce. It is not at all clear if the Akkocs sought out the "help" of the Final Exit Network. Newspaper reports mention the police found the book, The Final Exit, by Derek Humphrey published in 1992 and revised in 2005 to include the helium bag method of suicide--the way Akkoc's killed themselves. I for one would like to know exactly to what degree the Final Exit Network was or was not involved. Here I must have faith in the police department charged with investigating the deaths. News reports all state people familiar with the case consider it a sad case--disturbing at many levels. But aside from being sad I think the death of Ayshe Akkoc was preventable. I cannot help but speculate what would drive a healthy 31 year old person to end their life. Was she dependent upon her mother for all her needs? If so, why, why was she dependent upon a single care giver, an elderly person and her mother? In addition, who was the primary mover in the decision to end their lives? I assume the police are doing their best to sort all this out but know they can do nothing to prevent future people from ending their lives. And who is at risk? People with disabilities, elderly, and terminally ill. These populations can be found in every community in the country--and I firmly fit in the at risk category. What separates me from the Akkoc family is an utter rejection of ableist beliefs that dominate our society. That rejection also includes my family who are currently sacrificing much to be my sole caregivers. To them I owe a great debt and can relate to the angst Ayshe Akkoc must have faced knowing her mother and caregiver was terminally ill. Surely she must have been worried about her mother's fate as well as her own. Such a symbiotic relationship is both effective and dangerous. To me it highlights, we as a society must do far more to support people with disabilities.
What bothers me, keeps me awake at night, is the knowledge that I have the same legal rights as Ms. Akkoc did. What separates us was our response to disability based bias. I utterly reject dominate notions associated with disability as does my family and many friends. Sadly, for Ms. Akkoc into the void of social support we can find groups such as the Final Exit Network. Perhaps they were involved and perhaps they were not. But they did produce a book that is little more than a how to manual for suicide. I simply wish a how to caregiver manual of equal quality was available for people such as Ms. Akkoc that want to live and need basic care giving. Where I wonder is the support for people with disabilities? Based on my recent experiences, such support is grossly inadequate and the health car system we have is hopelessly flawed. Most reasonable people, aside from Tea Party extremists, accept the system is flawed. Despite multiple flaws, the Obama administration is trying to change the way health care and care giving is delivered but it is an uphill battle. For real change to take place we need the social demand. To date this is lacking and as a result I argue we need a social revolution. A revolution that acknowledges people like me and Ms. Akkoc have rights, rights that include care giving when needed.
Thursday, October 21, 2010
Wound Care Day: A Roller Coaster
This is a tough entry to write. I was at wound care which means I got to sit up in my wheelchair and leave not only the living room where I spend every minute of the day but leave the house as well. In a matter of a few words, getting up and out was utter joy. Bliss in many ways. It was also sensory over load--trees, fresh air, my dog, a car ride, moving independently, etc. This is all great--and the news from wound care was equally wonderful. Both wounds look awesome or as the nurse put it dryly "I am responding well to the therapy". The doctor classified me as a poster child for patient compliance. I have nothing to complain about--I really am healing and truly believe I am going to heal. By heal I mean I believe I will get better and return to normal. While I knew this in theory I now believe in fact. I can foresee the day when I will return to normal. I hope this return to normalcy takes place this year--as in before Xmas. This has been my stated goal and for the first time the surgeon who debrided the wounds agrees.
If I am filled with nothing but good news why is this entry so hard to write. Simple: I cannot stop from crying. By the time I got home I was exhausted. I was just physically spent. Months in bed is taking a toll. I am weak, shockingly out of shape. I get a bit dizzy when sitting, cannot push up a slight incline of a few hundred feet. Worse yet I had to go back to bed knowing it will be another two weeks before I get back up. I am tired, I am sick of looking at my ceiling, and I want out. I wan my life back. I know this is not going to happen this month, November and possibly even December. Even then it will take me time to regain all the strength I have lost. Of course I lift light weights and do as much as I can in bed but it is not nearly enough. I am overwhelmed by my loss of freedom, independence and any semblance of my previous independent life. It seems like a life time since I last kayaked or went for a walk with my dog. I am just devastated--so powerfully sad to be in bed and back to a very dull routine. even writing this I feel terrible. Many of my paralyzed peers would be far worse off--in a nursing home. I escaped this fate but remain in tears. Gosh, this has been a long haul and I have months to go yet. I will make it but I had no clue as to how hard this would be emotionally and how I would waste away physically. Ah, denial it is a very effective coping mechanism.
I hope I can get out of this deep emotional morass soon. I cannot give in to depression and feeling sorry for myself. This is destructive at multiple levels. I should have known today would be an emotional roller coaster. I knew getting up would be a dream like but did not anticipate the backlash. And the backlash is fierce. Perhaps in all this I am learning something. Women have told me a good cry makes them feel better--a notion I never could grasp. Today, I think I may get this. I may not feel better yet but at least writing these words have helped.
If I am filled with nothing but good news why is this entry so hard to write. Simple: I cannot stop from crying. By the time I got home I was exhausted. I was just physically spent. Months in bed is taking a toll. I am weak, shockingly out of shape. I get a bit dizzy when sitting, cannot push up a slight incline of a few hundred feet. Worse yet I had to go back to bed knowing it will be another two weeks before I get back up. I am tired, I am sick of looking at my ceiling, and I want out. I wan my life back. I know this is not going to happen this month, November and possibly even December. Even then it will take me time to regain all the strength I have lost. Of course I lift light weights and do as much as I can in bed but it is not nearly enough. I am overwhelmed by my loss of freedom, independence and any semblance of my previous independent life. It seems like a life time since I last kayaked or went for a walk with my dog. I am just devastated--so powerfully sad to be in bed and back to a very dull routine. even writing this I feel terrible. Many of my paralyzed peers would be far worse off--in a nursing home. I escaped this fate but remain in tears. Gosh, this has been a long haul and I have months to go yet. I will make it but I had no clue as to how hard this would be emotionally and how I would waste away physically. Ah, denial it is a very effective coping mechanism.
I hope I can get out of this deep emotional morass soon. I cannot give in to depression and feeling sorry for myself. This is destructive at multiple levels. I should have known today would be an emotional roller coaster. I knew getting up would be a dream like but did not anticipate the backlash. And the backlash is fierce. Perhaps in all this I am learning something. Women have told me a good cry makes them feel better--a notion I never could grasp. Today, I think I may get this. I may not feel better yet but at least writing these words have helped.
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