Anyone who has read my blog knows I deeply respect two disability rights groups--ADAPT and Not Dead Yet. There are other disability rights groups I like, Disability Rights and Education Defense Fund for instance but I reserve my greatest admiration for ADAPT and Not Dead Yet. I am by no means in favor of all that these two groups do but my differences are minor, a matter of style if you will. What draws me to ADAPT and Not Dead Yet is exactly what I do not have--a direct confrontational in your face approach. I am just too damn polite. Sure I am polemical when writing but in real life do my best to avoid confrontation. Yes, I have had confrontations but I do y best to avoid them.
Not Dead Yet is a national organization that is operating on a shoe string budget. Not Dead Yet is strongly opposed to any and all efforts that would lead to assisted suicide becoming legal. The proponents of assisted suicide in contrast have no financial constraints. They have much money at their disposal and are accustom to using its power to push assisted suicide legislation. Frankly the disparity between those for and opposed to assisted suicide is puzzling to me. Sadly I think part of the reason why assisted suicide groups are so well financed may have to do with the fact many people do not have a good death. This can be a traumatic experienced for loved ones who vow to change how we Americans die. Part of that process may include suicide. On the surface this seems like a reasonable belief. However, it ignores a significant social problem--namely not all people are valued in life nor as it is ending. I am among one population that is at great risk--people with a disability. Other populations include the elderly and terminally ill. All these lives have value. And it is these lives that Not Dead Yet seeks to protect. This is where I am in total agreement with Not Dead Yet.
I was shocked to learn just how little money Not Dead Yet has at their disposal. I am as a result amazed at what they can and have accomplished. They do much with very little. They deserve your support and mine. To this end, in a rare appeal for donations, Not Dead Yet is asking for help. I am sending a check today. Yes, me, a man so cheap my brother says my wheelchair squeaks everywhere I go, is sending a check to Not Dead Yet. It is the very least I can do. I urge everyone that comes to my blog to send a check too and if you cannot at least read the blog and book mark Not Dead Yet site on your computer. I suspect this is the only time I will ever make such a suggestion. We need Not Dead Yet. It is as simple as that.
Here is the donation information:
Tax deductible contributions would need to be made payable to:
“Center for Disability Rights” (CDR), designated for “Not Dead Yet” in the memo section of your check and mailed to 497 State Street, Rochester, NY 14608. Donations can also be made online by going to the Network for Good donation page, and following the prompts to donate to the Center for Disability Rights through the Network for Good (which allows credit card donations, adding a five percent charge), and designating the Not Dead Yet program. The default setting is for a one-time donation, but if you have the money and believe our work is important, please consider giving on a monthly or quarterly basis.
Thursday, December 30, 2010
Monday, December 27, 2010
Glee and the Glorification of Walking
I read many blogs on a regular basis. One such blog is Wheelie Catholic. Two fascinating posts made me think and get mad. The first dealt with the question of walking. People who cannot walk ask people such as myself who are paralyzed if they wish they could walk again. I answer this question with a resounding no and try to appear pissed off (an easy thing to do). I find the question itself insulting. It assumes the answer will be yes. That I desperately wish I could walk when that has not nor has ever been the case. Sure shortly after paralysis I wanted to walk again but knew such hopes were futile. Such hopes or dreams about walking are akin to wishing one would not age. It is just not possible and not worthy of thought. It does not take most newly paralyzed people long to move on with life--all those I know who are paralyzed are quite content. Yet popular culture via the mainstream media glorifies the small number of people that want to walk again. These people are often desperate, willing to undergo questionable surgeries, hold fund raisers for these efforts and do not question the overall significance of their actions. I have written about this before and gotten a few extremely critical replies. I do not mean to intentionally upset people that want to walk--I just reject their efforts as dehumanizing to the vast majority that do not share such a goal. If they want to waste their time on an unrealistic, though noble goal, fine for them. I just ask them to do so with a modicum of thought as the the bigger picture.
The second post I read at Wheelie Catholic had to do with a show I do my best not to watch--Glee. I do not at any level understand the shows popularity. I am usually offended by the character Artie who is portrayed by an actor without a disability. Artie and the show's writers are obsessed with walking. This works out well since they made sure not to hire an actor without a disability. Anyone familiar with paralysis and wheelchairs knows Artie is a poser--a bad one at that. He is also a sad sack--the show always has him wishing he could be, dare I say the word, normal. As Wheelie Catholic perceptively pointed out
"Participants emphasized that myths and assumptions about disability continue to be perpetuated in the popular show. Instead of using the show as a vehicle to turn this negativity around another generation is being honed on plots that include ablest notions. For example the Christmas show portrayed walking and a cure as every disabled persons wish. The plots include Artie wanting to play football, wanting to dance and do other things but never deal with the fact that sports and dancing are done by people in wheelchairs. Rather Artie is portrayed as depressed because he can't do these things.
It's a real slap in the face to those of us who live with a disability to see this kind of thing week after week. It completely ignores our disability culture and reinforces old and backward notions about disability."
A slap in the face--perfect words for what Glee represents. The Christmas show was particularly offensive as they had Artie using an exoskeleton to walk. I find such an invention a preposterous waste of time, resources, and labor. I showed the exoskeleton to my son earlier this year when the contraption appeared in technology magazines and he burst out laughing. "Dad" he said "obviously they never talked to anyone with a disability to come up with such a stupid design and idea". My boy gets it. And this as Wheelie Catholic points out is the real tragedy with Glee. The message sent remains the same--walking is Artie's goal, his dream to do things "normal" people can do like dance, play sports, and dance. Let me clue the writers in to a basic fact: people with disabilities do all these things, and quite well. I am a decent skier. I am a good kayaker. I am and always have been a bad dancer. I know some superb skiers, some can walk some cannot. I have seen some amazing dancers that could not walk as well. Just try a google video search if you doubt me. Or better yet watch the X Games or the Paralympics. I do not see any of these people wishing they could walk sporting a silly exoskeleon. Too bad we cannot make Artie as cranky as me. Imagine the scenes possible? A scary though my son just chimed in! Imagine this: "Artie don't you wish you could walk again?" Artie replies "That is ableist propaganda. Walking I will have you know is highly over rated. My wheelchair rules. I can sing, I can dance, I can do anything I want and none of it involves the ability to walk. You are a bigot!" When that sort of dialogue appears on a mainstream television program I will be living in the utopia of nondiscrimination. I doubt I will ever live in such a world but will always work toward that goal
The second post I read at Wheelie Catholic had to do with a show I do my best not to watch--Glee. I do not at any level understand the shows popularity. I am usually offended by the character Artie who is portrayed by an actor without a disability. Artie and the show's writers are obsessed with walking. This works out well since they made sure not to hire an actor without a disability. Anyone familiar with paralysis and wheelchairs knows Artie is a poser--a bad one at that. He is also a sad sack--the show always has him wishing he could be, dare I say the word, normal. As Wheelie Catholic perceptively pointed out
"Participants emphasized that myths and assumptions about disability continue to be perpetuated in the popular show. Instead of using the show as a vehicle to turn this negativity around another generation is being honed on plots that include ablest notions. For example the Christmas show portrayed walking and a cure as every disabled persons wish. The plots include Artie wanting to play football, wanting to dance and do other things but never deal with the fact that sports and dancing are done by people in wheelchairs. Rather Artie is portrayed as depressed because he can't do these things.
It's a real slap in the face to those of us who live with a disability to see this kind of thing week after week. It completely ignores our disability culture and reinforces old and backward notions about disability."
A slap in the face--perfect words for what Glee represents. The Christmas show was particularly offensive as they had Artie using an exoskeleton to walk. I find such an invention a preposterous waste of time, resources, and labor. I showed the exoskeleton to my son earlier this year when the contraption appeared in technology magazines and he burst out laughing. "Dad" he said "obviously they never talked to anyone with a disability to come up with such a stupid design and idea". My boy gets it. And this as Wheelie Catholic points out is the real tragedy with Glee. The message sent remains the same--walking is Artie's goal, his dream to do things "normal" people can do like dance, play sports, and dance. Let me clue the writers in to a basic fact: people with disabilities do all these things, and quite well. I am a decent skier. I am a good kayaker. I am and always have been a bad dancer. I know some superb skiers, some can walk some cannot. I have seen some amazing dancers that could not walk as well. Just try a google video search if you doubt me. Or better yet watch the X Games or the Paralympics. I do not see any of these people wishing they could walk sporting a silly exoskeleon. Too bad we cannot make Artie as cranky as me. Imagine the scenes possible? A scary though my son just chimed in! Imagine this: "Artie don't you wish you could walk again?" Artie replies "That is ableist propaganda. Walking I will have you know is highly over rated. My wheelchair rules. I can sing, I can dance, I can do anything I want and none of it involves the ability to walk. You are a bigot!" When that sort of dialogue appears on a mainstream television program I will be living in the utopia of nondiscrimination. I doubt I will ever live in such a world but will always work toward that goal
Friday, December 24, 2010
Merry Christmas to All
Twas the night before Christmas... Shoot someone stole my line. So tomorrow is the big day. I look forward to seeing my son's face when he opens his gifts. I look forward to a good meal and family. I look forward to seeing my black lab happy to have many humans about with whom she will play. I look forward to a roaring fire in the wood burning stove. I even look forward to Christmas music because I only listen to it on the day of Christmas. I am thankful I am healthy for I spent more than one Christmas sick and in the hospital a child. And truth be told those were the best Christmas' I ever had. Why? Well who does not feel bad for a kid in the hospital? I even got sympathy from my siblings! Staff went way out of their way to make kids happy as did my parents. And this is what Christmas is all about--good cheer and giving to others. By good cheer I mean putting on a smile and trying to make others feel better emotionally. This does not entail gifts but giving of one's sprit--the real meaning of Christmas. In terms of giving I do not mean gifts, sure gifts are fun to receive and give. The real giving is the gift of time and care for loved one's. Yikes, this may all sound trite as I am trying to get across sentiments that are hard if not impossible to express. It is in essence the most basic aspects of life I am thrilled to have. The love of my son, a good home, a wonderful family, friends. These things make me feel like a rich man. And so I extend my best to all those that come across these words. Merry Christmas to all and to all a goodnight.
Monday, December 20, 2010
New York Times Belittle Governor Paterson
The New York Times is at it again. Yes, the venerable paper of record has demeaned and belittled David Paterson. This is not unusual, they have an abysmal track record when it comes to discussing Paterson and the fact he is legally blind. In “Paterson’s Exit Presents Worry with Each Step” (December 20) is a cute play on words. The article begins “He worries about how he will make a living. He wonders whether people will value him once he leaves office”. These are good question considering 70% of people who are blind are unemployed—not under employed—unemployed. But this grim statistic is not mentioned or discussed. Paterson is worried about employment and what else? Well “”how to cross the street”! According to the NYT “a small army of state employees has done for Mr. Paterson what his predecessors did for themselves: they read him the newspaper, guided him up stairs and around corners, fixed his collar when it was sticking up, and even grabbed a quart of milk for him at the supermarket”. The subtext to this passage is clear—Paterson is not self-sufficient and perhaps by extension all blind people cannot be independent. Afterall Paterson had a “small army “of people, state employees no less, support him. The skeptic in me would like to point out all his predecessors had use of such an army but their competence was never called into question.
The NYT does correctly point out it must be hard for high powered and well connected politicians to suddenly leave office and be ordinary citizens. No more packed schedules, multiple perks and large staffs meant to serve. But the NYT relies on hyperbole when it notes that for Paterson “the transition will be extraordinary: after three decades in government, he must now relearn basic routines and rituals of living on his own”. It sounds as if Paterson is grossly incompetent, unable to function without a phalanx of assistants. What strike me as sad, depressing really, is the questions the NYT did not ask. The article mentions when Paterson was a boy his parents were determined not to treat him like he was disabled. This begs the question how do we treat children and adults with a disability? Less than human strikes me as the answer. I also wonder why Paterson defied his doctors advice and never learned Braille, used a seeing eye dog or cane. The NYT notes “Instead, he adapted”. Ugh! People with disabilities are superb at adapting but I wonder why Paterson took the hard road and refused to get a seeing eye dog, read Braille, or use a cane. Could it be he was ashamed of his disability? Could it be he was careful not to be perceived as disabled because it would hurt any political career? None of these questions are addressed. What does the NYT note instead? “His survival skills atrophied when he became lieutenant governor in 2007—and governor a year after Eliot Spitzer resigned.”
To his credit, Paterson plans on taking classes at Helen Keller Service for the Blind when his term ends. He also frankly states he is worried about not only his independence but his money. He does not as yet have a job and wants to work in the private sector. The governor’s job he noted gave him a false sense of income as the perks abounded. I wish Paterson well and get a sense most people in the state do as well. He took over the governorship at the worst possible time with no advance warning or notice. He did the best job he could do under adverse circumstances. In short, I think he was destined to fail—the deck was stacked against him from the second he took office. But articles like the one in the NYT certainly do not help. Yet another opportunity was lost by the mainstream media to discuss issues that affect millions of people with a disability, in this case blindness. Sure the article was touching, Paterson forthright and honest (in particular when he discussed the impact his job had on his family). But why does the NYT and other major media outlets always seem to miss the point. Paterson is like any other man that is leaving office yet the NYT chose to focus on mundane if not demeaning aspects of his life. I am not dismissing the concrete struggles Paterson will encounter but the NYT raised all the wrong issues as it related to his disability. This is why I am annoyed. It was a perfect chance to raise issues that we do not often read about as they relate to being blind. Why are so many blind people unemployed? How does people who are blind adapt? How does one choose to use a guide dog or cane? What reading software is available? And the list goes on and on. I have lots of questions as I am sure do readers of the NYT. Instead, we get the image of a man who is not independent, will struggle, and is looking for work. Demeaning indeed.
The NYT does correctly point out it must be hard for high powered and well connected politicians to suddenly leave office and be ordinary citizens. No more packed schedules, multiple perks and large staffs meant to serve. But the NYT relies on hyperbole when it notes that for Paterson “the transition will be extraordinary: after three decades in government, he must now relearn basic routines and rituals of living on his own”. It sounds as if Paterson is grossly incompetent, unable to function without a phalanx of assistants. What strike me as sad, depressing really, is the questions the NYT did not ask. The article mentions when Paterson was a boy his parents were determined not to treat him like he was disabled. This begs the question how do we treat children and adults with a disability? Less than human strikes me as the answer. I also wonder why Paterson defied his doctors advice and never learned Braille, used a seeing eye dog or cane. The NYT notes “Instead, he adapted”. Ugh! People with disabilities are superb at adapting but I wonder why Paterson took the hard road and refused to get a seeing eye dog, read Braille, or use a cane. Could it be he was ashamed of his disability? Could it be he was careful not to be perceived as disabled because it would hurt any political career? None of these questions are addressed. What does the NYT note instead? “His survival skills atrophied when he became lieutenant governor in 2007—and governor a year after Eliot Spitzer resigned.”
To his credit, Paterson plans on taking classes at Helen Keller Service for the Blind when his term ends. He also frankly states he is worried about not only his independence but his money. He does not as yet have a job and wants to work in the private sector. The governor’s job he noted gave him a false sense of income as the perks abounded. I wish Paterson well and get a sense most people in the state do as well. He took over the governorship at the worst possible time with no advance warning or notice. He did the best job he could do under adverse circumstances. In short, I think he was destined to fail—the deck was stacked against him from the second he took office. But articles like the one in the NYT certainly do not help. Yet another opportunity was lost by the mainstream media to discuss issues that affect millions of people with a disability, in this case blindness. Sure the article was touching, Paterson forthright and honest (in particular when he discussed the impact his job had on his family). But why does the NYT and other major media outlets always seem to miss the point. Paterson is like any other man that is leaving office yet the NYT chose to focus on mundane if not demeaning aspects of his life. I am not dismissing the concrete struggles Paterson will encounter but the NYT raised all the wrong issues as it related to his disability. This is why I am annoyed. It was a perfect chance to raise issues that we do not often read about as they relate to being blind. Why are so many blind people unemployed? How does people who are blind adapt? How does one choose to use a guide dog or cane? What reading software is available? And the list goes on and on. I have lots of questions as I am sure do readers of the NYT. Instead, we get the image of a man who is not independent, will struggle, and is looking for work. Demeaning indeed.
Friday, December 17, 2010
Feeling Betrayed
I was at wound care yesterday. I am back to my healing ways--sort of. The good news first: I am pretty much down to a single wound. The wound on my left hip that I developed in the hospital will be healed within a week to ten days. It is very small, half the size of a dime, and obviously almost healed. The other wound I developed on my ass is also healed. This was never a serious issue but could have been. The bad news: the wound on my right, the big problem from the get go is, well, a real problem. And truth be told it was always the major problem. It was a stage four wound, deep, nasty, and grossly infected when discovered. It is slowly getting smaller and has filled in--I have great granulation so I am told. Frankly I think it looks like chop meat--non infected lovely fresh tissue an MD would say. But that is not the issue. I have tunneling or undermining that is not getting any better. This is a huge problem. The MD changed the way we are doing the wound vacuum and hope in three weeks the undermining/tunneling is substantially better. If not, it is flap surgery for me. This surgery is a measure of last resort. Frankly the odds of me healing, that is the undermining/tunneling being better in three weeks are nil. I suspect the three week wait is less about healing and more about scheduling--going to the hospital for surgery between Thanksgiving and Christmas is a very bad idea. Shoot, going to the hospital for any reason between now and New Year day is a bad idea. I speak from experience. Staff does not want to be there, patients do not want to be there or conversely sad people that have no family want to be there. It is a bizarre mix of staff and patients. If humanly possible do not get involved.
I have thought of little else aside from my wound in the last 24 hours. I feel as though I have somehow failed or my body has failed to heal. I have been a model of "patient compliance" and know I am not to blame. I do not sit up often, my sitting is in fact severely limited. I try to bend my hips as little as possible in fact. None of this has done much good. I am worried--deeply worried. Flap surgery I see as a measure of last resort. If it fails I am in deep trouble. I worry not about the routine things that go wrong with surgery--I accept that risk as beyond my control. My worries are what happens if flap surgery fails. At that point I am at the end of the road--meaning I will never sit normally again. It will be just me and these four walls. That will be a hard life for sure. I have already lost the Fall, now the winter, and potentially much more. Of course I know flap surgery is usually successful and I will seek out a top notch plastic surgeon that does this all the time in New York City. The reality is I have no significant risk factors that could hurt me--I am not diabetic, have no circulatory problems nor am I obese. If anything I am too skinny--I weigh a whopping 140 pounds. I am even trying to gain weight without any luck (no more lite beer in the house).
What do I do when worried as I obviously am? Well, I read too much. I have been researching flap surgery and delving into growth attenuation again. The Hastings Center Report I read and wrote about has me wired. I am growing skeptical of the conclusions reached. I wonder what a rigorous informed consent would involve for those parents that would consider such a radical course of treatment that growth attenuation is. My idea of informed consent would render it virtually impossible to go through with growth attenuation. Frankly I don't trust large institutions such as Seattle Children's Hospital. I also have no faith in ethics committees--the sort of committee that already allowed growth attenuation to be performed, illegally as it turned out. Not a minor mistake in my estimation. I am also preparing for my son's return from college (that means ordering huge quantities of food he consumes). Now this makes my heart soar! I miss him very much but know he is learning and becoming an adult. His development is amazing and I am very much the proud poppa! Of course I also know by the time he returns to college for the Spring term I will be happy to see him go. It will not be easy for him or me to coexist. He is nocturnal and I am not. He is 18 and I am, well, old! I have household rules and he rebels--as he should. I know I did and made my parents crazy. I guess the apple does not fall far from the tree.
I have thought of little else aside from my wound in the last 24 hours. I feel as though I have somehow failed or my body has failed to heal. I have been a model of "patient compliance" and know I am not to blame. I do not sit up often, my sitting is in fact severely limited. I try to bend my hips as little as possible in fact. None of this has done much good. I am worried--deeply worried. Flap surgery I see as a measure of last resort. If it fails I am in deep trouble. I worry not about the routine things that go wrong with surgery--I accept that risk as beyond my control. My worries are what happens if flap surgery fails. At that point I am at the end of the road--meaning I will never sit normally again. It will be just me and these four walls. That will be a hard life for sure. I have already lost the Fall, now the winter, and potentially much more. Of course I know flap surgery is usually successful and I will seek out a top notch plastic surgeon that does this all the time in New York City. The reality is I have no significant risk factors that could hurt me--I am not diabetic, have no circulatory problems nor am I obese. If anything I am too skinny--I weigh a whopping 140 pounds. I am even trying to gain weight without any luck (no more lite beer in the house).
What do I do when worried as I obviously am? Well, I read too much. I have been researching flap surgery and delving into growth attenuation again. The Hastings Center Report I read and wrote about has me wired. I am growing skeptical of the conclusions reached. I wonder what a rigorous informed consent would involve for those parents that would consider such a radical course of treatment that growth attenuation is. My idea of informed consent would render it virtually impossible to go through with growth attenuation. Frankly I don't trust large institutions such as Seattle Children's Hospital. I also have no faith in ethics committees--the sort of committee that already allowed growth attenuation to be performed, illegally as it turned out. Not a minor mistake in my estimation. I am also preparing for my son's return from college (that means ordering huge quantities of food he consumes). Now this makes my heart soar! I miss him very much but know he is learning and becoming an adult. His development is amazing and I am very much the proud poppa! Of course I also know by the time he returns to college for the Spring term I will be happy to see him go. It will not be easy for him or me to coexist. He is nocturnal and I am not. He is 18 and I am, well, old! I have household rules and he rebels--as he should. I know I did and made my parents crazy. I guess the apple does not fall far from the tree.
Monday, December 13, 2010
Monday Morning Thoughts
Two days ago I felt the future was bright. I blame or credit the itty bit of snow we had. We had enough flurries to coat the ground. It was truly beautiful. I had a fire in my wood burning stove, cracked the living room sliding door open and felt the chill air be whipped into submission by the heat of the room. I thought that life was indeed sweet and that our culture has evolved in my lifetime. Based on the way information is now shared with the click of a few buttons on a computer I suspect social change will take place with increasing speed. What do I do when I feel so optimistic? Well I spoil myself and read the work of people I deeply admire. Hence I went to read Stephen Kuusisto always thought provoking writing at Planet of the Blind. Now this man can write. This man is a scholar’s scholar. He is also funny in the extreme. But what I love about his work the most is his ability to make me think. And I never cease to be amazed that we often share the same views and visions of the future. A few days ago, December 5 to be precise Kuususto wrote:
The stories arrive from every corner: a woman in japan who has had a stroke is walking with the aid of motorized legs; an American soldier is returning to combat duty with a graphite foot; a blind man in Finland has received an implanted microchip in his retina and he can see for the first time in his life. The changing nature of disability is in fact a cyborg manifestation of our broader human future—soon everyone will be part flesh and compensatory device.
“What’s that Mommy?”
“That’s a picture of the old day when people just had arms and legs”.
When I read this I thought of many experiences I had as an adaptive skier last winter. I felt like the Pied Piper of the slopes—kids were drawn to me like a magnet. My sit ski made me without question cool! Adults too were intrigued. I was asked more than once if it was possible to rent a sit ski as it looked like fun. Such experiences led me to conclude that within the realm of adaptive sports, skiing in particular, there is a cool factor involved in being an adaptive athlete. This is particularly true with kids—they are drawn to technology of all sorts. My son for instance thinks my mother’s prosthetic limb is the height of cool. When he was younger he termed her “The Grandma-nator”, the obvious reference here to the Terminator movies. No such cool factor however extends to disability within the academic and medical realm. Disability among academics is not seen as positive in any way. In fact a great deal of animosity exists that is directed to students with disabilities that seek any of accommodations. For instance, extra time on tests is perceived as akin to cheating or an unfair advantage. Likewise, spending money on ramps, elevators and electric doors is seen as a waste of scarce resources for a limited number of people. This thought process makes me crazy. It is just so wrong and narrow minded that is boggles my mind.
Why is disability, especially an obvious one such as paralysis or blindness such a big deal? It does not take a person long to learn how to adapt to such physical deficits. Indeed, there are some advantages to being paralyzed and here I am not thinking of handicapped parking! The point is I take great pride in my body and what it can do. I see nothing inherently “wrong” with myself or my body. Most people do not share this sentiment. By most people, I mean all those I encounter in a day. Disability we are taught in subtle and overt ways is bad. Everything must be done personally and medically to “overcome” a physical deficit. But no one stops to think what happens when a physical deficit is permanent like my paralysis. The fact is we people with a disability simply move on with life and incorporate disability into our lives and concept of self. It is part of our very idenity. Sadly, most do not get this at a fundamental level.
Eric Parens, a bioethcist I know and respect has written about the above disconnect between how a person with and without a disability think about disability in the broadest sense of the term. He wrote that when he initially heard disabled people state their disability was a central part of their identity he was taken aback. Parens is not proud of this fact but her sure as hell is honest. According Parens, “I practiced some armchair psychoanalysis. Yes, yes, that’s very nice. But let’s be honest: you’re in denial. The more I heard about people who say that the most difficult thing about having a disability was the way temporarily able-bodied people treated them, however, the more I began to take them at their word. I became convinced that if, after a process of truly informed decision-making, someone with a disability refuses the use of medical means to improve her social experience, then there is no good alternative to respecting her decision, no matter how surprising I might find it.”
The above quote was found in “Respecting Children with Disabilities—and Their Parents” (Hastings Center Report, 2009). Parens gets it! He was capable of putting aside his own learned bias and accepting people, in this case those with disabilities, for who they are as humans. If he can do this and children appear to be inherently capable of accepting disability why are adults so resistant to this line of thought? I must reluctantly conclude fear is a factor. Unlike other minority groups, disability is the one minority any person can suddenly belong to via bad luck such as a car accident. But surely fear alone cannot be the sole reason people with disabilities encounter such overwhelming prejudice. I have pondered this for 30+ years and have yet to come to an adequate resolution in my mind. I refuse to accept the status quo and hope through technology, social evolution, and superior exchange of information we can hope for a better future. One in which a paralyzed person such as myself can read in history books what discrimination was like.
The stories arrive from every corner: a woman in japan who has had a stroke is walking with the aid of motorized legs; an American soldier is returning to combat duty with a graphite foot; a blind man in Finland has received an implanted microchip in his retina and he can see for the first time in his life. The changing nature of disability is in fact a cyborg manifestation of our broader human future—soon everyone will be part flesh and compensatory device.
“What’s that Mommy?”
“That’s a picture of the old day when people just had arms and legs”.
When I read this I thought of many experiences I had as an adaptive skier last winter. I felt like the Pied Piper of the slopes—kids were drawn to me like a magnet. My sit ski made me without question cool! Adults too were intrigued. I was asked more than once if it was possible to rent a sit ski as it looked like fun. Such experiences led me to conclude that within the realm of adaptive sports, skiing in particular, there is a cool factor involved in being an adaptive athlete. This is particularly true with kids—they are drawn to technology of all sorts. My son for instance thinks my mother’s prosthetic limb is the height of cool. When he was younger he termed her “The Grandma-nator”, the obvious reference here to the Terminator movies. No such cool factor however extends to disability within the academic and medical realm. Disability among academics is not seen as positive in any way. In fact a great deal of animosity exists that is directed to students with disabilities that seek any of accommodations. For instance, extra time on tests is perceived as akin to cheating or an unfair advantage. Likewise, spending money on ramps, elevators and electric doors is seen as a waste of scarce resources for a limited number of people. This thought process makes me crazy. It is just so wrong and narrow minded that is boggles my mind.
Why is disability, especially an obvious one such as paralysis or blindness such a big deal? It does not take a person long to learn how to adapt to such physical deficits. Indeed, there are some advantages to being paralyzed and here I am not thinking of handicapped parking! The point is I take great pride in my body and what it can do. I see nothing inherently “wrong” with myself or my body. Most people do not share this sentiment. By most people, I mean all those I encounter in a day. Disability we are taught in subtle and overt ways is bad. Everything must be done personally and medically to “overcome” a physical deficit. But no one stops to think what happens when a physical deficit is permanent like my paralysis. The fact is we people with a disability simply move on with life and incorporate disability into our lives and concept of self. It is part of our very idenity. Sadly, most do not get this at a fundamental level.
Eric Parens, a bioethcist I know and respect has written about the above disconnect between how a person with and without a disability think about disability in the broadest sense of the term. He wrote that when he initially heard disabled people state their disability was a central part of their identity he was taken aback. Parens is not proud of this fact but her sure as hell is honest. According Parens, “I practiced some armchair psychoanalysis. Yes, yes, that’s very nice. But let’s be honest: you’re in denial. The more I heard about people who say that the most difficult thing about having a disability was the way temporarily able-bodied people treated them, however, the more I began to take them at their word. I became convinced that if, after a process of truly informed decision-making, someone with a disability refuses the use of medical means to improve her social experience, then there is no good alternative to respecting her decision, no matter how surprising I might find it.”
The above quote was found in “Respecting Children with Disabilities—and Their Parents” (Hastings Center Report, 2009). Parens gets it! He was capable of putting aside his own learned bias and accepting people, in this case those with disabilities, for who they are as humans. If he can do this and children appear to be inherently capable of accepting disability why are adults so resistant to this line of thought? I must reluctantly conclude fear is a factor. Unlike other minority groups, disability is the one minority any person can suddenly belong to via bad luck such as a car accident. But surely fear alone cannot be the sole reason people with disabilities encounter such overwhelming prejudice. I have pondered this for 30+ years and have yet to come to an adequate resolution in my mind. I refuse to accept the status quo and hope through technology, social evolution, and superior exchange of information we can hope for a better future. One in which a paralyzed person such as myself can read in history books what discrimination was like.
Friday, December 10, 2010
Accessible NYC Cabs: TLC is Opposed
About once a year I hail a taxi in NYC. This may be a simple everyday activity for tourists and city residents but is never easy or simple when you use a wheelchair. Cabbies in NYC are a mixed bag and none know a thing about wheelchairs. No cabbie has ever been happy to see me and most make it clear they are decidedly unhappy to pick me up. Instead I use the MTA buses and have been doing so since they were introduced in the late 1970s. Opposition to making city buses was fierce. Former Mayor Koch was opposed and famously remarked it would be cheaper to hire a limo for every person with a disability than make the buses accessible. Koch was dead wrong as millions of people have benefited from accessible buses and 30 years later service is routinely good (though slow). These thoughts and memories sprung to mind this week because the TLC is in the process of choosing the cab of the future. Disability activists want the new cabs to be accessible. As I have come to expect in all things accessible in transportation the TLC is opposed.
Unlike the MTA 30 years ago when the city was upfront in their opposition to access, the TLC is being sneaky (underhanded) in trying to avoid access issues. Again, I am not surprised. Opposition when it comes to access on planes, cars, trains, and boats remains the norm—it is as though that pesky law known as the ADA did not exist. Opposition is always fierce and commonplace among a multitude of institutions and businesses. In fact at no point in my life am I more aware of my disability than when I am using mass transportation or attending a large event at a stadium or theatre. In fact my son recently attended a game at MSG without me and was stunned as he put it “how easy bipedal life is when compared to your constant access aggravations”. How aggravating is access? Consider this: In NYC there are 13,237 yellow cabs. How many do you think are accessible? Does 240 sound correct? In a word, yes. A grand total of 240 cabs are accessible. Think about this. Does this sound like a “reasonable accommodation? Common sense tells me no. Experience tells me an emphatic no!
The TLC thinks a centralized dispatch system is the answer rather than the obvious—the obvious is making hundreds if not thousands of cabs accessible. According to the TLC “We believe such a dispatch system is an achievable goal that would materially improve transportation options for wheelchair users in lieu of a fully wheelchair-accessible taxicab fleet”. If you believe this dispatch system is fair or will work I have a bridge for sale in Brooklyn. If I have learned anything in the last 30 years it is that separate is inherently unequal, a belief that is the bedrock of our educational system. Any sort of paratransit or transit alternative simply does not work. Such systems are designed to fail by providing inferior service. I speak from experience forevery such system I have tried to use has been an abysmal failure. A quick glance at accessible mass transportation reveals that the more dissent and protests that took place led directly to improved access for all. I feel old writing this but back in the late 1970s and early 1980s when opposition to making NYC buses was common I was what people called a “bus buddy”. I was taught and subsequently taught other people with a disability how to get on and off the bus. Those early days were hard—I was routinely harassed by my fellow passengers and MTA bus drivers. I vividly recall one bus flying by me in Harlem with people all chanting “go, go, go”. Where were they going? By me, the scourge of the earth, for that is exactly how I was treated. Fast forward to today. The MTA buses provide good service for all, meaning those that can walk and those that cannot. Of course we are talking about buses that are slow, over crowded but the point here is that I am usually treated equally. This ense of equality should extend to taxi service in NYC. Other cities in the USA and abroad have achieved this. Here cities like London and San Francisco come to mind. Granted NYC is a hard place to navigate and survive, but we need not make things harder than they need be. And getting a cab in NYV is hard and aggravating. It is an invitation for social and practical abuse. In opposing to making a sizable portion of the NYC taxi fleet accessible a clear message is being sent—people with disabilities are second-class citizens we do not want in our cars. I for one find this appalling and most likely illegal
Unlike the MTA 30 years ago when the city was upfront in their opposition to access, the TLC is being sneaky (underhanded) in trying to avoid access issues. Again, I am not surprised. Opposition when it comes to access on planes, cars, trains, and boats remains the norm—it is as though that pesky law known as the ADA did not exist. Opposition is always fierce and commonplace among a multitude of institutions and businesses. In fact at no point in my life am I more aware of my disability than when I am using mass transportation or attending a large event at a stadium or theatre. In fact my son recently attended a game at MSG without me and was stunned as he put it “how easy bipedal life is when compared to your constant access aggravations”. How aggravating is access? Consider this: In NYC there are 13,237 yellow cabs. How many do you think are accessible? Does 240 sound correct? In a word, yes. A grand total of 240 cabs are accessible. Think about this. Does this sound like a “reasonable accommodation? Common sense tells me no. Experience tells me an emphatic no!
The TLC thinks a centralized dispatch system is the answer rather than the obvious—the obvious is making hundreds if not thousands of cabs accessible. According to the TLC “We believe such a dispatch system is an achievable goal that would materially improve transportation options for wheelchair users in lieu of a fully wheelchair-accessible taxicab fleet”. If you believe this dispatch system is fair or will work I have a bridge for sale in Brooklyn. If I have learned anything in the last 30 years it is that separate is inherently unequal, a belief that is the bedrock of our educational system. Any sort of paratransit or transit alternative simply does not work. Such systems are designed to fail by providing inferior service. I speak from experience forevery such system I have tried to use has been an abysmal failure. A quick glance at accessible mass transportation reveals that the more dissent and protests that took place led directly to improved access for all. I feel old writing this but back in the late 1970s and early 1980s when opposition to making NYC buses was common I was what people called a “bus buddy”. I was taught and subsequently taught other people with a disability how to get on and off the bus. Those early days were hard—I was routinely harassed by my fellow passengers and MTA bus drivers. I vividly recall one bus flying by me in Harlem with people all chanting “go, go, go”. Where were they going? By me, the scourge of the earth, for that is exactly how I was treated. Fast forward to today. The MTA buses provide good service for all, meaning those that can walk and those that cannot. Of course we are talking about buses that are slow, over crowded but the point here is that I am usually treated equally. This ense of equality should extend to taxi service in NYC. Other cities in the USA and abroad have achieved this. Here cities like London and San Francisco come to mind. Granted NYC is a hard place to navigate and survive, but we need not make things harder than they need be. And getting a cab in NYV is hard and aggravating. It is an invitation for social and practical abuse. In opposing to making a sizable portion of the NYC taxi fleet accessible a clear message is being sent—people with disabilities are second-class citizens we do not want in our cars. I for one find this appalling and most likely illegal
Thursday, December 9, 2010
Growth Attenuation, Hastings Center Report and Media Misrepresentation
It has been one month since the Hastings Center Report about growth attenuation was published by the “Seattle Working group”. I was encouraged by the article produced though I disagreed with the working premise—specifically that growth attenuation or the Ashley Treatment as the popular media terms it is a viable course of treatment. I do not think growth attenuation should permitted even in cases where a child is not ambulatory and has a profound cognitive disability. However, this does not mean growth attenuation should never be performed. In some exceedingly rare cases growth attenuation may be medically necessary. But such a treatment is extreme and must be subject to thorough review. At minimum that review would entail internal, external and the independent legal representation of the child/person whose growth is attenuated. The Seattle working group in this regard has multiple fine suggestions none of which are being reported by the media. The media, here I refer to mainstream news outlets such as newspapers and television reports are grossly misrepresenting the conclusions reached by the Seattle Working Group and published in the Hastings Center Report. This particularly unfortunate as there is much to be learned by a careful reading of the article wisely published by the Hastings Center (subscription required).
For those unfamiliar with the Hastings Center, it is a fascinating center for the study of bioethics. They produce first rate, serious and sober scholarship. I was lucky enough to be a visiting scholar at the Hastings Center earlier this year and found the experience fabulously rewarding. For better or worse, the Hasting Center does not often make the mainstream news. I suspect the Hastings Center is content to be a purely scholarly institution. I admire this institutional effort in this era of news bites especially since some institutions and universities are all too eager to get their names in print for dubious reasons (think Princeton University and the philosopher Peter Singer). Unfortunately for the Hastings Center the conclusions of the Seattle Working Group are the subject to superficial news bites. What do these news bites report? Simply put, growth attenuation is “morally permissible’. Based on my reading of the Seattle Working Group this is not what they have concluded. This is a big problem in terms of disability rights at multiple levels. Since the end of November several news outlets have repeated that growth attenuation is “morally permissible”. This is an over simplification if not gross distortion of the facts. And I am sure not only am I unhappy but so too are the members of the Seattle Working Group.
The twenty person Seattle working group (curiously with only 19 names listed in the Hastings Center Report) “reached a moral compromise rather than consensus”. Some members of the group are dissatisfied, even distressed, by the paper produced. No such “morally permissible” conclusion was reached. The “compromise position” agreed upon was as follows:
“Growth attenuation can be an ethically acceptable decision because the benefits and risks are similar to those associated with other decisions that parents make for their profoundly disabled children and about which reasonable people disagree.”
The Seattle group maintains that just because a parent asks for growth attenuation does not mean such a course of treatment should automatically be permitted. Safe guards must be put in place that include “eligibility criteria, a thorough decision-making process and involvement of ethics consultants or committees”. This is fine but does not nearly go far enough for me. I have no faith in ethics committees nor in large institutions where decision making strategies make little sense to outsiders. Moreover, I would argue any child subjected to growth attenuation requires independent legal representation in the form of a guardian ad litem. I am by no means a proponent of court intervention however given the extreme nature of growth attenuation extreme measure of protection must be put in place.
There is much to dissect in the Hastings Center Report. Sadly, the most important point raised has been ignored. According to the Seattle Working Group, growth attenuation highlights the unique needs and problems that children and adults with physical and cognitive disabilities encounter. These needs and problems are routinely ignored and in most states support for such individuals is grossly inadequate. Thus the Seattle Working Group concluded, “it is clear that these families need greater social support. To date, there has been insufficient public discussion about how to provide that support and improve the lives of people with profound disabilities. Further, the issues facing this population have not been the primary focus for many health care professionals.”
The above quote gets to the heart of the issue. Why are people with disabilities socially isolated and struggle mightily to access basic health care? Why are people with cognitive disabilities in particular stigmatized inside and outside of the medical community? I have little doubt that my struggles with equal rights and accessing the health care system as an adult with a profound physical disability pale in comparison to those with a cognitive and physical disability. This is an issue worthy of public debate and I applaud the Seattle Working Group for highlighting this point. In contrast, I decry the misleading headlines that confuse rather than clarify the central issues involved in growth attenuation. I have been reading such misleading headlines for decades and on bad days wonder if people will ever really care about the unique issues all people with disabilities arte forced to confront. Will resources, social and practical, ever be deemed important enough to support the lives of people with disabilities? This is a subject worthy of delving into in not only disability rights, bioethics, but in investigative journalism. For instance I have not read any detailed story that questions exactly why some parents are driven to consider growth attenuation. That is a story that outlines just how hard it is to find adequate resources and health care professionals willing to help. Sure I have read the Ashley X parents blog but they are far from the norm. Their goal seemed double sided from the start—help their daughter and sell growth attenuation. Given this, I wish that people would read what the Seattle Working Group has to say on the matter. It is the first even handed scholarly treatment of the pros and cons of growth attenuation. I hardly agree with all that they have written but I do respect the balance they maintained. I only wish the important sober and serious conclusions were discussed in the mainstream media. Now that is a discussion I would love to partake in.
For those unfamiliar with the Hastings Center, it is a fascinating center for the study of bioethics. They produce first rate, serious and sober scholarship. I was lucky enough to be a visiting scholar at the Hastings Center earlier this year and found the experience fabulously rewarding. For better or worse, the Hasting Center does not often make the mainstream news. I suspect the Hastings Center is content to be a purely scholarly institution. I admire this institutional effort in this era of news bites especially since some institutions and universities are all too eager to get their names in print for dubious reasons (think Princeton University and the philosopher Peter Singer). Unfortunately for the Hastings Center the conclusions of the Seattle Working Group are the subject to superficial news bites. What do these news bites report? Simply put, growth attenuation is “morally permissible’. Based on my reading of the Seattle Working Group this is not what they have concluded. This is a big problem in terms of disability rights at multiple levels. Since the end of November several news outlets have repeated that growth attenuation is “morally permissible”. This is an over simplification if not gross distortion of the facts. And I am sure not only am I unhappy but so too are the members of the Seattle Working Group.
The twenty person Seattle working group (curiously with only 19 names listed in the Hastings Center Report) “reached a moral compromise rather than consensus”. Some members of the group are dissatisfied, even distressed, by the paper produced. No such “morally permissible” conclusion was reached. The “compromise position” agreed upon was as follows:
“Growth attenuation can be an ethically acceptable decision because the benefits and risks are similar to those associated with other decisions that parents make for their profoundly disabled children and about which reasonable people disagree.”
The Seattle group maintains that just because a parent asks for growth attenuation does not mean such a course of treatment should automatically be permitted. Safe guards must be put in place that include “eligibility criteria, a thorough decision-making process and involvement of ethics consultants or committees”. This is fine but does not nearly go far enough for me. I have no faith in ethics committees nor in large institutions where decision making strategies make little sense to outsiders. Moreover, I would argue any child subjected to growth attenuation requires independent legal representation in the form of a guardian ad litem. I am by no means a proponent of court intervention however given the extreme nature of growth attenuation extreme measure of protection must be put in place.
There is much to dissect in the Hastings Center Report. Sadly, the most important point raised has been ignored. According to the Seattle Working Group, growth attenuation highlights the unique needs and problems that children and adults with physical and cognitive disabilities encounter. These needs and problems are routinely ignored and in most states support for such individuals is grossly inadequate. Thus the Seattle Working Group concluded, “it is clear that these families need greater social support. To date, there has been insufficient public discussion about how to provide that support and improve the lives of people with profound disabilities. Further, the issues facing this population have not been the primary focus for many health care professionals.”
The above quote gets to the heart of the issue. Why are people with disabilities socially isolated and struggle mightily to access basic health care? Why are people with cognitive disabilities in particular stigmatized inside and outside of the medical community? I have little doubt that my struggles with equal rights and accessing the health care system as an adult with a profound physical disability pale in comparison to those with a cognitive and physical disability. This is an issue worthy of public debate and I applaud the Seattle Working Group for highlighting this point. In contrast, I decry the misleading headlines that confuse rather than clarify the central issues involved in growth attenuation. I have been reading such misleading headlines for decades and on bad days wonder if people will ever really care about the unique issues all people with disabilities arte forced to confront. Will resources, social and practical, ever be deemed important enough to support the lives of people with disabilities? This is a subject worthy of delving into in not only disability rights, bioethics, but in investigative journalism. For instance I have not read any detailed story that questions exactly why some parents are driven to consider growth attenuation. That is a story that outlines just how hard it is to find adequate resources and health care professionals willing to help. Sure I have read the Ashley X parents blog but they are far from the norm. Their goal seemed double sided from the start—help their daughter and sell growth attenuation. Given this, I wish that people would read what the Seattle Working Group has to say on the matter. It is the first even handed scholarly treatment of the pros and cons of growth attenuation. I hardly agree with all that they have written but I do respect the balance they maintained. I only wish the important sober and serious conclusions were discussed in the mainstream media. Now that is a discussion I would love to partake in.
Tuesday, December 7, 2010
Slumping Badly
Yes, the title is an obvious reference to baseball, a sport I adored growing up. My team as a child was the NY Mets. In the 1960s it was easy to root for the Mets, an expansion team. They stunk but were lovable losers after their inception. But a funny thing happened to the Mets in the late 1960s. Thanks to outstanding pitching they won the World Series in 1969. I was just a little boy at the time, a very sick one too. Back then I was spending most of my time on neurological wards at Columbia University Neurological Institute. Those were hard times, an era when a child was expected to act like an adult and do one thing--get better. That was my job and I was expected to nothing else but focus on recovery. That meant no television or radio and often bed rest. I was supposed to wear a hospital gown and did so--I had no choice. But I did have one thing going for me: great parents that fought tooth and nail for me. Hospital rules, rigid and inflexible, were bent to the breaking point on a regular basis. I was allowed to have the very first transistor radio sold to consumers. This technological marvel fit in the palm of my hand and I was able to listen to each and every Met game. In the Fall of 1969 I was the most popular person in the hospital. I knew the score of the Mets games as they were all played during the work day. I was a folk hero--people from all over came to see me and asked "what was the score?". I was a rock star. Like all stars and great teams success was fleeting. By the mid 1970s the Mets stunk again.
For the last week I feel like the Mets--I am in a deep slump. The setback from last week has really thrown me for a loop. I am essentially miserable. I will not be healed by Christmas as hoped. Ski season is likely lost. My life sucks. I have no sense of normalcy. I do not look forward to waking up. I am just watching life pass me by. I miss my ordinary life filled with work, fun, errands, and aggravations. Yes, I even miss people so I must be in bad shape! I want to drive my car and cannot because I am too weak to get in and out by myself. I want to grocery shop. I want to get up and go, go, go. None of that will happen anytime soon. I have missed the Fall, an entire season and months of activity. I cannot seem to focus in anything else but this loss. I am going buggy laying in bed day in and day out. Yet writing this outrages me. What a wimp! How ungrateful can I be! My family sacrificed for me and I sit her feeling sorry for myself. Worse yet, I know I am lucky, I escaped a nursing home. Institutional life would have killed me.
Knowing I am in a deep slump and doing something about it I am learning are two different things. To continue my baseball analogy I am in the dog days of August and batting under .200. How to end this slump is I hope a matter of time. I need one good day of work to get me going. I can thankfully sit up slightly more--the wound on the right side of my butt is already healed. I do not want to push things though. I am looking at computers and hope to be on line on a regular basis soon. I cannot decide what sort of computer to buy. My latest thought is to forego a desk top Mac and go for the Airbook. Of course I also need to figure out how to pay for this--no small feat given the fact the plumber was at my house most of the day. Let's see a new computer or running hot water? Hot water will win every time.
Well, there is no neat and tidy end to this post. I like to have a clear beginning, middle and end to everything I write. Not today. Just cannot come up with the goods, sorry. See I told you I am slumping, even this post leaves much to be desired. Indeed, it contains the sort of self pity and woe is me attitude I despise. I thought long and hard about hitting the delete button but changed my mind. I hope this will jump start me. I do have much to say. The Ashley Treatment is on my mind as is a way to get bioethicists and disability activists together. I also read a great book by a paralyzed woman with two kids. She wrote eloquently about her experiences and the bigotry she encountered as a mother. This fills a huge gap in the literature on disability and feminist scholarship. All this will wait until tomorrow. My sitting time is now spent. Ugh, I am frustrated in the extreme. I suspect if I could sit all day I could break out and get work done.
For the last week I feel like the Mets--I am in a deep slump. The setback from last week has really thrown me for a loop. I am essentially miserable. I will not be healed by Christmas as hoped. Ski season is likely lost. My life sucks. I have no sense of normalcy. I do not look forward to waking up. I am just watching life pass me by. I miss my ordinary life filled with work, fun, errands, and aggravations. Yes, I even miss people so I must be in bad shape! I want to drive my car and cannot because I am too weak to get in and out by myself. I want to grocery shop. I want to get up and go, go, go. None of that will happen anytime soon. I have missed the Fall, an entire season and months of activity. I cannot seem to focus in anything else but this loss. I am going buggy laying in bed day in and day out. Yet writing this outrages me. What a wimp! How ungrateful can I be! My family sacrificed for me and I sit her feeling sorry for myself. Worse yet, I know I am lucky, I escaped a nursing home. Institutional life would have killed me.
Knowing I am in a deep slump and doing something about it I am learning are two different things. To continue my baseball analogy I am in the dog days of August and batting under .200. How to end this slump is I hope a matter of time. I need one good day of work to get me going. I can thankfully sit up slightly more--the wound on the right side of my butt is already healed. I do not want to push things though. I am looking at computers and hope to be on line on a regular basis soon. I cannot decide what sort of computer to buy. My latest thought is to forego a desk top Mac and go for the Airbook. Of course I also need to figure out how to pay for this--no small feat given the fact the plumber was at my house most of the day. Let's see a new computer or running hot water? Hot water will win every time.
Well, there is no neat and tidy end to this post. I like to have a clear beginning, middle and end to everything I write. Not today. Just cannot come up with the goods, sorry. See I told you I am slumping, even this post leaves much to be desired. Indeed, it contains the sort of self pity and woe is me attitude I despise. I thought long and hard about hitting the delete button but changed my mind. I hope this will jump start me. I do have much to say. The Ashley Treatment is on my mind as is a way to get bioethicists and disability activists together. I also read a great book by a paralyzed woman with two kids. She wrote eloquently about her experiences and the bigotry she encountered as a mother. This fills a huge gap in the literature on disability and feminist scholarship. All this will wait until tomorrow. My sitting time is now spent. Ugh, I am frustrated in the extreme. I suspect if I could sit all day I could break out and get work done.
Thursday, December 2, 2010
Set Backs
Excuse my silence. I have been set back by computer woes--my ever so reliable well designed Mac has died. Cause of death, kernal panic, something I never heard of until it beset my machine. I was set to buy a new Mac until my dishwasher, sink, and hot water heater all decided to break at the same time on the same day. I am relegated to using an old unreliable lap top that works when it is in the mood. Hence getting on line has been a trial and my budget devoted to the plumber. Afterall, what is more important running water or a computer?
I was at wound care today and had my first setback. I have a new minor wound on my ass--a pressure point sore no less. Sitting as a result is severely cut back--no more than one hour a day. This is devastating emotionally. Intellectually I know it is not that bad--a small abrasion that will heal in a week or two. My brain knows that but my heart is broken. Worse yet, the under mining on my left side is not filling in or doing so at a glacial pace. The wound is in a bad spot I am told and hard to heal. All of this was complicated by a urinary crisis that caused me to spend a night in a large NYC hospital. Ugh, how those huge institutions bring back bad memories from childhood, none of them good. In short I am filled with bad news and more bad news. Oh, and to add insult to injury I lost power yesterday in the middle of the night, the night after I got home from a sleepless night at the hospital. We had a big wind/rain storm and thousands were without power. Do I rate a high priority with the electric company with my clinitron bed and wound vacuum? In a word, no. Apparently only a respirator is deemed a medical priority. No point in arguing with a giant electric company on this point.
I do have one good thing to write: I had the best Thanksgiving of my life! My friends from the Vermont ski house came to my home and my son was home. What a wonderful day. I am stunned by my son's maturity. In fact, I am teary eyed with pride. I have spawned a responsible adult! Or as adult as a college student can be that has a penchant for sleeping to 2PM! As for Thanksgiving the company was great, all fine people that knew I had been and am going through a rough time. For day I felt normal, alive and social. Frankly,the social isolation is getting to me. Some of this is self imposed--I am depressed with my progress. Some of it is the nature of being stuck at home day in and day out. Being computer-less has not helped. Given this, Thanksgiving with such good friends was truly special. Indeed, I was so happy I hope to repeat the day next year. The post Thanksgiving week has been a trial, the first time my progress has not been linear. I knew this may happen but was not prepared for the devastation it has caused. I am just sad, deeply sad, and worried. In the middle of the night I have dark worries, will I ever return to normal? Is my life forever compromised? I do not think this is the case but I worry. My worries have worries and I need to dig out my old worry doll. This reminds me of my father who was a world class worrier. I guess the apple does not fall far from the tree.
I was at wound care today and had my first setback. I have a new minor wound on my ass--a pressure point sore no less. Sitting as a result is severely cut back--no more than one hour a day. This is devastating emotionally. Intellectually I know it is not that bad--a small abrasion that will heal in a week or two. My brain knows that but my heart is broken. Worse yet, the under mining on my left side is not filling in or doing so at a glacial pace. The wound is in a bad spot I am told and hard to heal. All of this was complicated by a urinary crisis that caused me to spend a night in a large NYC hospital. Ugh, how those huge institutions bring back bad memories from childhood, none of them good. In short I am filled with bad news and more bad news. Oh, and to add insult to injury I lost power yesterday in the middle of the night, the night after I got home from a sleepless night at the hospital. We had a big wind/rain storm and thousands were without power. Do I rate a high priority with the electric company with my clinitron bed and wound vacuum? In a word, no. Apparently only a respirator is deemed a medical priority. No point in arguing with a giant electric company on this point.
I do have one good thing to write: I had the best Thanksgiving of my life! My friends from the Vermont ski house came to my home and my son was home. What a wonderful day. I am stunned by my son's maturity. In fact, I am teary eyed with pride. I have spawned a responsible adult! Or as adult as a college student can be that has a penchant for sleeping to 2PM! As for Thanksgiving the company was great, all fine people that knew I had been and am going through a rough time. For day I felt normal, alive and social. Frankly,the social isolation is getting to me. Some of this is self imposed--I am depressed with my progress. Some of it is the nature of being stuck at home day in and day out. Being computer-less has not helped. Given this, Thanksgiving with such good friends was truly special. Indeed, I was so happy I hope to repeat the day next year. The post Thanksgiving week has been a trial, the first time my progress has not been linear. I knew this may happen but was not prepared for the devastation it has caused. I am just sad, deeply sad, and worried. In the middle of the night I have dark worries, will I ever return to normal? Is my life forever compromised? I do not think this is the case but I worry. My worries have worries and I need to dig out my old worry doll. This reminds me of my father who was a world class worrier. I guess the apple does not fall far from the tree.
Monday, November 22, 2010
A Grand Canyon Explained: The Divide Between Bioethicists and Disability Rights
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.
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.
Friday, November 19, 2010
Wound Care: A Spectacular Day
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.
Sunday, November 14, 2010
Baxter and Assisted Suicide: A Nuanced Conclusion
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.
Thursday, November 11, 2010
Assisted Suicide and Autonomy
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”.
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.
Monday, October 18, 2010
How Not To Lose Your Mind
I will be going to wound care Thursday. Unlike my first experience when I was extremely worried before my appointment, this week I eagerly look forward to wound care. In large part I am eager to go to wound care because I get to sit up. Of course my sitting is limited, severely limited in fact, but it is sitting. I get to leave my living room, breath fresh air, get in a car (though lying down in the back) and see trees, cars, and other humans. I get to push myself from the hospital entrance to the wound care center. Again, this may not sound like much but when you are stuck in bed all day for weeks on end this short foray into the real world is liberating albeit brief and limited.
So what do I do to keep myself from going nuts? The usual helps--reading, writing, surfing the internet, watching television at night. Helping me somewhat is the start of the hockey season--I am a die hard NY Ranger fan and watch every game humanly possible. But I have added a twist to the above coping methods. I bought a gaming console--an XBOX 360 and am playing with my son's games. This is a great time consuming distraction. Yet I worry if I have lost my mind. I think of the games made for the XBOX as kid stuff but I must confess I find the Halo series of games addictive. I don't play for hours on end as my son did in middle school but I sure do enjoy shooting aliens for some unknown reason. I also rationalize that I am bad at the games I play. My son plays on the legendary level while I am content at easy. The difference between the two is stark. Yet, here I am wondering if my mind will turn to mush if I keep playing XBOX. Am I doomed? Is my finely tuned mind, replete with PhD from an Ivy League school being wasted? Can I accept the XBOX as nothing more than a temporary solution to my current social and physical isolation? Am I just rationalizing in an effort to justify what might not be age appropriate gaming? Or am I close minded? Should I accept gaming as part of modern life and an acceptable outlet for a person of an age? I posed these questions to my son who sighed heavily and said "Dad, it is okay to have fun. You do not need to intellectualize everything you do". Now that was an answer that I liked.
So what do I do to keep myself from going nuts? The usual helps--reading, writing, surfing the internet, watching television at night. Helping me somewhat is the start of the hockey season--I am a die hard NY Ranger fan and watch every game humanly possible. But I have added a twist to the above coping methods. I bought a gaming console--an XBOX 360 and am playing with my son's games. This is a great time consuming distraction. Yet I worry if I have lost my mind. I think of the games made for the XBOX as kid stuff but I must confess I find the Halo series of games addictive. I don't play for hours on end as my son did in middle school but I sure do enjoy shooting aliens for some unknown reason. I also rationalize that I am bad at the games I play. My son plays on the legendary level while I am content at easy. The difference between the two is stark. Yet, here I am wondering if my mind will turn to mush if I keep playing XBOX. Am I doomed? Is my finely tuned mind, replete with PhD from an Ivy League school being wasted? Can I accept the XBOX as nothing more than a temporary solution to my current social and physical isolation? Am I just rationalizing in an effort to justify what might not be age appropriate gaming? Or am I close minded? Should I accept gaming as part of modern life and an acceptable outlet for a person of an age? I posed these questions to my son who sighed heavily and said "Dad, it is okay to have fun. You do not need to intellectualize everything you do". Now that was an answer that I liked.
Thursday, October 14, 2010
Me and My Wheelchair: A Love Story
Every morning I wake up my black lab greets me with great enthusiasm bordering on a giant celebration. Tail waging, excitement coursing through every fiber of her body she lets me pet her head for a while. She then looks at me, directs her attention to my wheelchair and looks back at me. No doubt she is thinking "let's go have fun"--get up and we can play ball. Sadly, I disappoint her and me every morning. This little ritual I play out with my lab makes me miss my wheelchair--it is a visceral pain. I am in some ways in mourning. I miss my wheelchair, I miss the power it gives me to be independent. I miss the feel of upholstery against my back. I miss pushing against the tires and the intimate knowledge I have as to how I can direct it's forward thrust. Why I even miss the dirt I collect during the day on the wheelchair frame-an absence my lab misses as my tires clearly pick up smells that are utterly fascinating. I miss watching a scary movie and the way I slightly rock back and forth. I could go on but I miss my wheelchair more than anyone can imagine. Sure some other wheelchair users will get my sense of loss, people like Simi Linton who in my Body Politic wrote about her "cherry red" power wheelchair she named Rufus.
As I grimly greeted another day bed bound, I thought how many people are there in the world that I could share my views with. Not many, precious few in fact. Certainly not the average American. Nope, for most people without any knowledge of a wheelchair they see it as a mechanical device--at best. A wheelchair is a thing, a product, an inanimate object. Worse yet, many see and associate a wheelchair with inability, physical incapacity. Here, think Grandma, Grandpa and all the elderly cannot do. The symbolic association with with a wheelchair is not positive--it is the ultimate symbol of weakness and disability. This makes me crazy--how I wonder can the average American be so stupid. I love my wheelchair--every piece of it. It is a part of me, akin to my leg or arm. I cannot envision life without it. It is a vibrant positive part of who I am. When it breaks, I am devastated--how could such an integral part of me fail. Such mechanical failures are very rare, most easily fixed. But such thoughts remind me of how I feel when my body becomes sick--yikes, I wonder, why did my bodily systems fail.
So here I lay tapping out my words on a key board loving looking at my wheelchair. I wonder what my son would make of such thoughts? Surely the old man has lost his wits. He may be right in his thoughts but I think not. I think my obvious and intense feelings for my wheelchair reveal the great divide between those who use a wheelchair and those that do not. We are talking about a cultural gulf the size of the Grand Canyon. I firmly believe there is a disability culture as unique and fascinating as any other subcultural group. Not all crippled people are members--some are not happy nor do they embrace disability culture. The reasons for this are many and varied starting with the overwhelming stigma associated with disability and wheelchair use. But some of see through this cultural bias--we understand it for what it really is--bigotry plain and simple. Frankly I am letting my emotions fly or as some in the body art community would say "letting my freak fly". I am acknowledging my love for a fire engine red wheelchair with its plain black upholstery, one brake, four wheels and superb ride. It is a part of me I cannot envision life without. Hence I mourn its temporary loss and look forward to the day we are reunited. And I know that day grows closer every day. My wounds are heal well and I am making steady progress. In fact, the wound care nurses characterize them as "beautiful". Of course, I look forward to the day they do not exist and know that day will come in the next few months. Then and only then can I be reunited with the most lovely wheelchair on the face of the earth.
As I grimly greeted another day bed bound, I thought how many people are there in the world that I could share my views with. Not many, precious few in fact. Certainly not the average American. Nope, for most people without any knowledge of a wheelchair they see it as a mechanical device--at best. A wheelchair is a thing, a product, an inanimate object. Worse yet, many see and associate a wheelchair with inability, physical incapacity. Here, think Grandma, Grandpa and all the elderly cannot do. The symbolic association with with a wheelchair is not positive--it is the ultimate symbol of weakness and disability. This makes me crazy--how I wonder can the average American be so stupid. I love my wheelchair--every piece of it. It is a part of me, akin to my leg or arm. I cannot envision life without it. It is a vibrant positive part of who I am. When it breaks, I am devastated--how could such an integral part of me fail. Such mechanical failures are very rare, most easily fixed. But such thoughts remind me of how I feel when my body becomes sick--yikes, I wonder, why did my bodily systems fail.
So here I lay tapping out my words on a key board loving looking at my wheelchair. I wonder what my son would make of such thoughts? Surely the old man has lost his wits. He may be right in his thoughts but I think not. I think my obvious and intense feelings for my wheelchair reveal the great divide between those who use a wheelchair and those that do not. We are talking about a cultural gulf the size of the Grand Canyon. I firmly believe there is a disability culture as unique and fascinating as any other subcultural group. Not all crippled people are members--some are not happy nor do they embrace disability culture. The reasons for this are many and varied starting with the overwhelming stigma associated with disability and wheelchair use. But some of see through this cultural bias--we understand it for what it really is--bigotry plain and simple. Frankly I am letting my emotions fly or as some in the body art community would say "letting my freak fly". I am acknowledging my love for a fire engine red wheelchair with its plain black upholstery, one brake, four wheels and superb ride. It is a part of me I cannot envision life without. Hence I mourn its temporary loss and look forward to the day we are reunited. And I know that day grows closer every day. My wounds are heal well and I am making steady progress. In fact, the wound care nurses characterize them as "beautiful". Of course, I look forward to the day they do not exist and know that day will come in the next few months. Then and only then can I be reunited with the most lovely wheelchair on the face of the earth.
Monday, October 11, 2010
Things I Miss Large and Small
It has been a month or so since I found my wound and am stuck in bed. Frankly, I shudder at how quickly the time has past. And no I am not having fun. Over the weekend it dawned me how much I miss doing things I took for granted. I am nor referring to work but rather the small things that make a life. So what do I miss? In no special order:
1. Kayaking: This is the best time of year to be on the water. Power boaters are few and far between, the heat of the summer is no longer a variable, and the changing color of the trees spectacular.
2. Driving: I miss my car. I love driving and once a week I would drive to new location for no reason.
3. Food: I miss cooking my own food and putting it on my own plate. I miss making my own sandwich, making coffee in the morning, getting my own beer and picking out the beer mug.
4. Tub: I miss soaking in a warm bath.
5. Cleaning: Hard to imagine but I miss cleaning my own house. Such mundane activities help me unwind and think.
6. My desk: I miss my desk where I always get my best writing done.
7. Grocery shopping:Another activity hard to believe missing. Ordinarily shopping is a chore but I miss picking out my own food.
8. Students: I miss the enthusiasm of college students. Even when they screw up, and they do, it is somehow endearing.
9. Puttering: Screwing around the house and letting my mind wonder. I do my best thinking organizing my files and book.
10. Splitting wood: I have a wood burning stove as my principal source of heat. I collect and split all my wood in the Fall.
11. Fire: I love to burn wood inside and out. I often collect wood and cook food over an open fire. I enjoy the unique wood fire provides.
12. My son: I miss doing stuff--anything together. Thankfully I knew long absence was coming so I was prepared. I have learned he does not like to talk on the phone or email so we text message. He sounds like a man now. Wow has he matured.
13. Routine social interaction: The hardest for me to imagine missing. I actually miss people. I miss the ordinary social interactions we do not think about.
14. Dog: I have an active lab I miss playing ball with. I love to see her run. Now I toss the ball from my bed across the living room floor. This is a very distant second to being outside.
15. Privacy: I don't get to be alone often. I value solitude more than anything else.
The above list is silly and is not intended to be sentimental. It is random at best and indicates to me how small and large factors impact our lives. The reality is each day I am in bed gets easier: I am resigned to my fate as it is for now. I know my wounds are healing, my skin care and wound care ideal. am doing everything in my power to heal and am making slow albeit daily progress. I sure as hell have my ups and downs--I remain very emotional, a basic case when compared to my ordinary life. But I have even accepted this. I worry all the time--I look at the wound vacuum a million times a day and am terrified of power outages. No power no wound vacuum or clinitron bed. So my mantra has become my dependency is temporary, a very short period of my life given the numbers of years I have been alive. This helps but not as much as would like. Instead of dwelling on this I occupy my mind, write, read, and put up a post such as this one.
1. Kayaking: This is the best time of year to be on the water. Power boaters are few and far between, the heat of the summer is no longer a variable, and the changing color of the trees spectacular.
2. Driving: I miss my car. I love driving and once a week I would drive to new location for no reason.
3. Food: I miss cooking my own food and putting it on my own plate. I miss making my own sandwich, making coffee in the morning, getting my own beer and picking out the beer mug.
4. Tub: I miss soaking in a warm bath.
5. Cleaning: Hard to imagine but I miss cleaning my own house. Such mundane activities help me unwind and think.
6. My desk: I miss my desk where I always get my best writing done.
7. Grocery shopping:Another activity hard to believe missing. Ordinarily shopping is a chore but I miss picking out my own food.
8. Students: I miss the enthusiasm of college students. Even when they screw up, and they do, it is somehow endearing.
9. Puttering: Screwing around the house and letting my mind wonder. I do my best thinking organizing my files and book.
10. Splitting wood: I have a wood burning stove as my principal source of heat. I collect and split all my wood in the Fall.
11. Fire: I love to burn wood inside and out. I often collect wood and cook food over an open fire. I enjoy the unique wood fire provides.
12. My son: I miss doing stuff--anything together. Thankfully I knew long absence was coming so I was prepared. I have learned he does not like to talk on the phone or email so we text message. He sounds like a man now. Wow has he matured.
13. Routine social interaction: The hardest for me to imagine missing. I actually miss people. I miss the ordinary social interactions we do not think about.
14. Dog: I have an active lab I miss playing ball with. I love to see her run. Now I toss the ball from my bed across the living room floor. This is a very distant second to being outside.
15. Privacy: I don't get to be alone often. I value solitude more than anything else.
The above list is silly and is not intended to be sentimental. It is random at best and indicates to me how small and large factors impact our lives. The reality is each day I am in bed gets easier: I am resigned to my fate as it is for now. I know my wounds are healing, my skin care and wound care ideal. am doing everything in my power to heal and am making slow albeit daily progress. I sure as hell have my ups and downs--I remain very emotional, a basic case when compared to my ordinary life. But I have even accepted this. I worry all the time--I look at the wound vacuum a million times a day and am terrified of power outages. No power no wound vacuum or clinitron bed. So my mantra has become my dependency is temporary, a very short period of my life given the numbers of years I have been alive. This helps but not as much as would like. Instead of dwelling on this I occupy my mind, write, read, and put up a post such as this one.
Friday, October 8, 2010
It's Back to Day One Again
I sat up for the first time in nearly two weeks yesterday. Wow, what a pleasure! My sitting time was of course severely limited. I got out of bed, into wheelchair and then in the back of my car. Why was I in the back of my car and sitting up? Simple: insurance refused to pay for an ambulance to transport me to and back from wound care. If I paid for such a luxury it would have been about $1,200. This does not include th cost of the appointment at wound care--also not covered. Hence I was transported laying down in the back of my car. If we got in an accident screwed does not even begin to describe the consequences.
To say I was stressed out yesterday is an understatement. I did not sleep the night before nor could I eat the morning of the appointment. Accompanied my brother and brother-in-law, all went well. The bottom line is that both wounds are healing nicely. The surgeon is a funny lady--she described the wounds as "beautiful". Flowers I are beautiful wounds are not. Regardless, my "beautiful" wounds needed little debridement hence I lost little blood--my my major concern as the last debridement was a gruesome bloody affair. The time table for healing is vague as we humans, especially those paralyzed, do not heal on a set schedule. I gently pushed for a time frame and was told before the end of 2011. Shock spread across my face and I said I needed something more precise. The surgeon replied with a somewhat less vague 2-6 months. This is fair--vague but I can at least wrap my mind around this. Aside from medical issues, I am still struggling with the great cost of my care. I have made zero progress in this regard. This is alarming though a short term problem. My only success came yesterday when I expressed concern about the cost of bandages for the wound vacuum--I was thrilled to see the wound care specialist used one bandage bundle for both wounds thus saving me 50% of supplies. As I was leaving this persona gave me a big box of supplies--sample she said. Score one for the home team.
I must be getting better physically as my choice of reading is improving by leaps and bounds. I am back to reading typical academic discourse, stories about disability rights abuse, and most importantly getting pissed off. I am thus starting to look beyond my own tale of woe and thinking--a healthy sign. Given this, I will start to write along two lines--posts about my progress and compromised life and a return to disability rights as civil rights. In essence, I am back mentally and resigned to my life as it is for the next few months--yes, the next 2-6 months. I have also not given up on ski season or teaching in the Spring--maybe I can handle one class and some ski runs in February. I need to have reasonable hopes and start writing about disability rights as civil rights. I know this viewpoint will not be found in the mainstream media and have read a few articles from the NY Times in recent days that have annoyed me to no end. On such story had to do with paraolympians competing with so called able bodied athletes. Apparently this is becoming more common though at times controversial. What the NY Times failed to mention is the only time controversy arises is when an athlete with a disability soundly defeats his or her non disabled competitors. When this happens all of a sudden any adaptive device represents an unfair advantage. In a word, bull. Ah, it is good to be getting back to my feisty self.
To say I was stressed out yesterday is an understatement. I did not sleep the night before nor could I eat the morning of the appointment. Accompanied my brother and brother-in-law, all went well. The bottom line is that both wounds are healing nicely. The surgeon is a funny lady--she described the wounds as "beautiful". Flowers I are beautiful wounds are not. Regardless, my "beautiful" wounds needed little debridement hence I lost little blood--my my major concern as the last debridement was a gruesome bloody affair. The time table for healing is vague as we humans, especially those paralyzed, do not heal on a set schedule. I gently pushed for a time frame and was told before the end of 2011. Shock spread across my face and I said I needed something more precise. The surgeon replied with a somewhat less vague 2-6 months. This is fair--vague but I can at least wrap my mind around this. Aside from medical issues, I am still struggling with the great cost of my care. I have made zero progress in this regard. This is alarming though a short term problem. My only success came yesterday when I expressed concern about the cost of bandages for the wound vacuum--I was thrilled to see the wound care specialist used one bandage bundle for both wounds thus saving me 50% of supplies. As I was leaving this persona gave me a big box of supplies--sample she said. Score one for the home team.
I must be getting better physically as my choice of reading is improving by leaps and bounds. I am back to reading typical academic discourse, stories about disability rights abuse, and most importantly getting pissed off. I am thus starting to look beyond my own tale of woe and thinking--a healthy sign. Given this, I will start to write along two lines--posts about my progress and compromised life and a return to disability rights as civil rights. In essence, I am back mentally and resigned to my life as it is for the next few months--yes, the next 2-6 months. I have also not given up on ski season or teaching in the Spring--maybe I can handle one class and some ski runs in February. I need to have reasonable hopes and start writing about disability rights as civil rights. I know this viewpoint will not be found in the mainstream media and have read a few articles from the NY Times in recent days that have annoyed me to no end. On such story had to do with paraolympians competing with so called able bodied athletes. Apparently this is becoming more common though at times controversial. What the NY Times failed to mention is the only time controversy arises is when an athlete with a disability soundly defeats his or her non disabled competitors. When this happens all of a sudden any adaptive device represents an unfair advantage. In a word, bull. Ah, it is good to be getting back to my feisty self.
Tuesday, October 5, 2010
Reading, Reading and Reading
I must be healthier as I have mad a transition from reading crap to real books. Hence murder mysteries and action adventure novels have slowly been replaced by good books. I started with a biography of Moe Berg, a baseball player and OSS operative during World War II. I then read another wonderful biography about Sam Steward, an academic turned tattoo artist. This text was fascinating in that Steward was gay, kept detailed record of his sexual and personal life. This is a unique text and offers a glimpse into what it was like for gay men at a time when homosexuality was considered a mental illness. I also reread parts of the Body Silent as it related to issues of dependence. I have recently finished Beth Haller's wonderful book Representing Disability in an Ableist World. This book I consider a must read for all those interested in the skewed media representations of disability. And my God, how much more skewed could the representation of disability be in mainstream media. Haller insightfully delves this subject and provides a penchant analysis.
Representing Disability, shrewdly published by Advocado Press, should be used as a required text in mass media and disability studies classes. Haller' book consists of 10 chapters. Some chapters resonate more than others, for instance I particularly liked
Chapter 4, Not Worth Keeping Alive assisted suicide debate as debated in the New York Times. Frankly I disagree with Haller's conclusions but respect her scholarship and admire her obvious respect for Not Dead Yet, a group sadly ignored by the mainstream press. In my mind, what makes Haller's work so important is her ability to get across the deep impact ableism has had on the lives of all people with a disability. Also worth noting here is Haller's discussion of alternative media outlets and internet resources. Whenever I am at a loss to explain why the media screws up a disability related story I now have an invaluable resource to rely on as will all others wise enough to purchase her book.
Representing Disability, shrewdly published by Advocado Press, should be used as a required text in mass media and disability studies classes. Haller' book consists of 10 chapters. Some chapters resonate more than others, for instance I particularly liked
Chapter 4, Not Worth Keeping Alive assisted suicide debate as debated in the New York Times. Frankly I disagree with Haller's conclusions but respect her scholarship and admire her obvious respect for Not Dead Yet, a group sadly ignored by the mainstream press. In my mind, what makes Haller's work so important is her ability to get across the deep impact ableism has had on the lives of all people with a disability. Also worth noting here is Haller's discussion of alternative media outlets and internet resources. Whenever I am at a loss to explain why the media screws up a disability related story I now have an invaluable resource to rely on as will all others wise enough to purchase her book.
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