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.
Glee and the Glorification of Walking
Monday, December 27, 2010
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
Merry Christmas to All
Friday, December 24, 2010
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.
New York Times Belittle Governor Paterson
Monday, December 20, 2010
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.
Feeling Betrayed
Friday, December 17, 2010
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 Morning Thoughts
Monday, December 13, 2010
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.
Accessible NYC Cabs: TLC is Opposed
Friday, December 10, 2010
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
Growth Attenuation, Hastings Center Report and Media Misrepresentation
Thursday, December 9, 2010
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.
Slumping Badly
Tuesday, December 7, 2010
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.
Set Backs
Thursday, December 2, 2010
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.
Subscribe to:
Posts (Atom)