Comfort Care: Killing a Bad Cripple

Last friday an article I have alluded to was made available on line.  Here I refer to "Comfort Care as a Denial of Personhood". My essay can be read on line at: http://onlinelibrary.wiley.com/doi/10.1002/hast.38/full. Please note Wiley, the publisher of the Hastings Center Report where my essay will appear in print later this summer has a very impressive pay wall. To access my essay you must subscribe. I cannot even access what I wrote!  However, I can post some quotes. The essay pertains to the severe wound I had in 2010 and in particular one experience I had late at night.  Let me be clear: I was very sick, critically ill. This is what transpired, an event that has haunted me. I was asked:


"if I understood the gravity of my condition. Yes, I said, I am well aware of the implications. He grimly told me I would be bedbound for at least six months and most likely a year or more. That there was a good chance the wound would never heal. If this happened, I would never sit in my wheelchair. I would never be able to work again. Not close to done, he told me I was looking at a life of complete and utter dependence. My medical expenses would be staggering. Bankruptcy was not just possible but likely. Insurance would stop covering wound care well before I was healed. Most people with the type of wound I had ended up in a nursing home.
This litany of disaster is all too familiar to me and others with a disability. The scenario laid out happens with shocking regularity to paralyzed people. The hospitalist went on to tell me I was on powerful antibiotics that could cause significant organ damage. My kidneys or liver could fail at any time. He wanted me to know that MRSA was a life-threatening infection particularly because my wound was open, deep, and grossly infected. Many paralyzed people die from such a wound.
His next words were unforgettable. The choice to receive antibiotics was my decision and mine alone. He informed me I had the right to forego any medication, including the lifesaving antibiotics. If I chose not to continue with the current therapy, I could be made very comfortable. I would feel no pain or discomfort at all. Although not explicitly stated, the message was loud and clear. I can help you die peacefully. Clearly death was preferable to nursing home care, unemployment, bankruptcy, and a lifetime in bed. I am not sure exactly what I said or how I said it, but I was emphatic�I wanted to continue treatment, including the antibiotics. I wanted to live."


I never told anyone about what transpired. Not my family, friends, the nurses I saw for over a year when I was bedbound. I did not tell anyone for a very good reason: I was scared. Terrified really. A physician, a person who is highly educated, and I would hope free of any bias considered my life not worth living. Disability was a fate worse than death. It was the ultimate insult. People with a disability do not write about fear, we feel it I am sure, but few delve into how deadly cultural assumptions can be. Harriet McBryde Johnson and Kenny Fries are two exceptions--others exist I am sure. Doctors usually chalk this up to misunderstandings on the part of the patient and sweep such incidents under the carpet.  But as many people with a disability know critical care hospitals are a hostile environment.  I wrote:

"Hospitals and diagnostic equipment are often grossly inaccessible. Staff members can be rude, condescending, and unwilling to listen or adapt to any person who falls outside the norm. We people with a disability represent extra work for them. We are a burden. We also need expensive, high-tech equipment that the hospital probably does not own. In my case, a Clinitron bed, which provides air fluidized therapy, had to be rented while I was hospitalized. Complicating matters further is the widespread use of hospitalists�generally an internist who works exclusively in the hospital and directs inpatient care. The hospitalist model of care is undoubtedly efficient and saves hospitals billions of dollars a year. However, there is a jarring disconnect between inpatient and outpatient care, which can represent a serious risk to people with a disability. My experience certainly demonstrates this, as no physician who knew me would have suggested withholding lifesaving treatment."

When I showed my essay to a friend he was deeply annoyed. He thought what I wrote was counter productive. I was exaggerating the situation. He told me no one is out to get you and you are going to scare people. I replied people with a disability have every right to be scared. While no one wakes up in the morning and thinks I will discriminate against people with a disability, that does not mean discrimination is non existent. I am sure when I saw the film Million Dollar Baby and the audience cheered when the main character, Maggie, was killed I doubt anyone clapping thought they were bigots. But I was shaken to the core--the assumption clearly was one is better off dead than disabled. What exactly does that mean about the quality of my life? The belief one is better off dead than disabled has real life consequences I wrote about:

"people with a disability who publicly express a desire to die rather than live become media darlings. They get complete and total support in their quest. Ironically, who is discriminated against? Those people with a disability who choose to live. We face a great challenge in that society refuses to provide the necessary social supports that would empower us to live rich, full, and productive lives. This makes no sense to me. It is also downright dangerous in a medical system that is privatized and supposedly �patient-centered��buzzwords I often heard in the hospital. It made me wonder, how do physicians perceive �patient-centered� care? Is it possible that patient-centered health care would allow, justify, and encourage paralyzed people to die? Is patient- centered care a euphemism that makes people in the health care system feel better? When hospitalized, not once did I feel well cared for".

I went on to note:

"What I experienced in the hospital was a microcosm of a much larger social problem. Simply put, my disabled body is not normal. We are well equipped to deal with normal bodies. Efficient protocols exist within institutions, and the presence of a disabled body creates havoc. Before I utter one word or am examined by a physician, it is obvious that my presence is a problem. Sitting in my wheelchair, I am a living symbol of all that can go wrong with a body and of the limits of medical science to correct it."

When I was stuck in bed at the end of 2010 and for much of 2011 I often thought of my mentor at Columbia University, Robert Murphy whose book The Body Silent changed my life. I had found myself socially isolated and miserable. I did not handle the situation well--my family can vouch for this assessment. Looking back, I realize now I was deeply depressed.  I am far from a social butterfly but being stuck in one's living room for a year will test the inner fortitude of any human being. But the point I am trying to stress is that one phrase from Murphy's book resonated in my head. Those that know me would likely guess liminality but they would be wrong. I realized one important thing when I was in bed. We people with a disability are no longer liminal beings--the ADA has seen to that and this is evidence of hard fought social change. We people with a disability can have a place in society--we are no longer on the outside looking in. We can force others to make "reasonable accommodations".  This is a battle but the law is on our side. However we are far from equal and I would maintain are "ambiguous people", our existence acknowledged but not necessarily valued or wanted. Thus I am convinced the next step in the evolution of disability rights will entail a social battle for recognition. The law is on our side but society is not. We have an ambiguous identity but that by itself is a sign of major progress. I absolutely look forward to what is to come. And today I am thinking life is sweet.  

Anti Intellectualism: A Rampant Problem

"Greed is good". This well-known line is from the fictional character Gordon Gekko in the 1987 film Wall Street. I was reminded of this line after reading about what Mitt Romney told a group of engineering students at Otterbein University. As many will have heard Romney suggested young people take risk. He said "Take a risk, get the education, borrow money if you have to from your parents, start a business". And how much did Romney suggest students borrow? $20,000. This amount was not pulled out of thin air--it was how much the owner of a sandwich chain, Jimmy John's, borrowed from his father to start the business. As expected people have blasted Romney for being out of touch--and for good reason.  The vast majority of parents are either broke or in debt by the time they are finished paying tuition costs. What the vast majority of people have missed is an even more objectionable comment Romney made at a round table discussion with students. Thus the statement about borrowing $20,000 is a red herring.

Speaking to a group of engineering students he told them they were in high demand. High demand meaning they will likely get jobs upon graduation. Romney then speculated about the value of other areas of study and prospects for employment. He stated: "you really don�t want to take out $150,000 loan to go into English because you�re not going to be able to pay it back. You might want to think about something else that meets your interest�.  Romney believed he could make this claim because he was an English major. I could blast Romney as many Democrats have done on borrowing $20,000 from one's parents. Instead, I will comment on why his statement r.e. English majors is significant. Romney clearly believes an degree in English is not worth $150,000 of debt. You can't pay it back. So who can major in English? Only those that can afford it. This is bad enough but Romney's statement I take to be most damning is his suggestion those that cannot afford to major in English study something else. And what would that something else be? Business, engineering, computer science and other majors with perceived "value".  Perceived value here meaning a reasonable chance to get a job and start a career.  By implication majors such as history, anthropology, sociology, english, art history and others have no value. They are not worth $150,000 of debt.

Romney's take on the value of an education is not unusual. To me, it is an indication of a corporate mentality that has firmly gripped higher education, parents and students alike.  Higher education is no longer valued. It is a means to an end. Universities hire people like me--highly educated day laborers with no job security or benefits. Good luck finding a professor with tenure. They are a rarity. More classes are now offered at night than during the day as the vast majority of students are working at least 20 hours a week to pay for tuition. Many of my students miss class because they are forced to work late. Every class I teach has at least one student sitting in the back who struggles not to fall asleep. Students are simply too busy working to put in the needed time and effort to do well in class. I cannot get angry at students--they are likely accumulating major debt to pay for tuition. They are understandably worried.

What I worry about are the broader cultural implications.  That is what does it say about American society when a person like Romney thinks a degree in English is not worth $150,000 of debt. This statement is grossly misleading. I want to know why a college degree is so expensive. I worry about the fact tuition for a four year college education has increased an astounding 827% since 1980. I want to know why student loan debt has increased by 511% since 1999. I want to know why no one is discussing student loan debt that exceeds $1 trillion dollars. When I read these statistics I can think of only one thing--capitalist society is creating a permanent class of people deeply in debt. Worse yet, students in my classes are apathetic. They know exactly what they are doing. They realize the long range implications. The constant refrain I hear from them is always the same: "there is nothing we can do. That's just the way it is".  This sort of deep depression about the future reminds of the origin of Punk music in the 1970s in the UK. In college when depressed I would play the Sex Pistols song God Save the Queen over and over.  It was the unofficial Punk rock anthem. The lyrics seem particularly relevant today:

God save the queen
The fascist regime
They made you a moron
Potential H-bomb

God save the queen
She ain't no human being
There is no future
In England's dreaming

Don't be told what you want
Don't be told what you need
There's no future, no future,
No future for you

God save the queen
We mean it ma'am
We love our queen
God saves

God save the queen
'Cause tourists are money
And our figurehead
Is not what she seems

Oh God save history
God save your mad parade
Oh Lord God have mercy
All crimes are paid

When there's no future
How can there be sin
We're the flowers in the dustbin
We're the poison in your human machine
We're the future, your future

God save the queen
We mean it ma'am
We love our queen
God saves

God save the queen
We mean it ma'am
And there is no future
In England's dreaming

No future, no future,
No future for you
No future, no future,
No future for me

No future, no future,
No future for you
No future, no future
For you

Is there no future? I do not want to believe this but will readily admit I am worried. I am worried about my students and worried about my son. What will their future hold? These worries are connected to the implications of a Republican victory in the upcoming presidential race.  If Romney wins I fear he will be given a mandate to wage a war on the poor in this country of historic proportions. Republicans, galvanized by a presidential victory, will not just slash the social safety net for the poor but eliminate it entirely. I have no doubt those close to me, people with a disability, will be among the first to be targeted. These are troubling times and we need an educated public that refuses to be misled. Perhaps that English degree is worth it.

Bigotry Abounds

http://youtu.be/7WuqLJtoXyY

In the last week I have been deeply disturbed by baseless bigotry. Two stories have troubled me. First, as an avid hockey fan I was shocked when I read comments after the Boston Bruins lost game 7 and hence the series against the Washington Capitals. The man that scored the deciding goal, in over tome no less, Joel Ward, is a clutch performer. This is what I think when I see his name on the sports page. A clutch player who has a knack for scoring important goals. That is not what all fans saw. Some bigots only noticed the color of Wards skin. Seconds after he scored a torrent of racist tweets appeared, all of them vile.  Worse yet, Ward was not surprised by the bigoted remarks. When I read this I thought back to a pre season exhibition game in London Ontario where a banana was thrown at Wayne Simmonds, one of the few other black men playing in the NHL. Ward and Simmons both said such bigotry is to be expected when playing a sport that is dominated by white athletes. This observation is truly sad, proof bigotry is alive and well.

The second terrible story concerns Jennifer Tyrrell in the moving talk she gave at GLAAD (Gay and Lesbian Alliance Against Defamation). Tyrrell's experience with the Boy Scouts of America did not surprise me one iota. Please watch this embedded video from beginning to end. I was deeply moved and reminded of my struggles with the Boy Scouts of America. My son, like Tyrrell's was captivated in first grade by Cub Scout activities. Much to my chagrin, after attending one Pack Night he was hooked. By extension I was hooked too as I was quickly recruited to be a Den Leader. For those that know nothing about the BSA, the organization is divided into two different groups--younger boys participate in the Cub Scouts. Cub Scouts are parent driven--parents do the organizing and choose activities for boys to participate in. When boys reach middle school they can become Boy Scouts though half usually drop out. Boy Scouts are a youth directed group, that is older boys are supposed to design, lead and choose activities with limited parental support. The point here is to emphasize the Cub Scouts and Boy Scouts are both BSA owned and operated entities but in reality are remarkably different. I have much first hand experience with the BSA. Aside from being a Den Leader and committee member of the Cub Scouts I also "advanced" with my son into the Boy Scouts. With the Boy Scouts I was an active assistant scout master. I was also the Venture Crew Leader, another group operated byt he BSA.

I learned much as a leader within the BSA. The power and weakness of the BSA is rooted in its refusal to change. We anthropologists characterize the images associated with the BSA to be symbolic demography. That is nationwide Americans have a preconceived notion of what the BSA entails. Think Norman Rockwell images.  Boys camping. Boys helping a little old lady across the street. Boys taught to be honest to a fault--hence the phrase "you are such a Boy Scout".  Boys who help the poor.  Boys that are clean cut and do not do drugs. Boys that have a moral compass and do not bully others. This is powerful and basic. Time and time again I saw boys truly taught by parents and older boys to do the right thing. This refusal to change has a dark under belly.  In celebrating the past circa 1955 Normal Rockwell imagery, in embracing the symbols associated with the roots of scouting, the BSA has failed to acknowledge much less embrace fundamental changes in American society. It is as thought the civil rights movement never existed. Women rights and the feminist movement never took place. Black people were never integrated. Cripples never escaped institutions. Churches abound and gay people are firmly and solidly in the closet. It is a very white world. People know their place. It is in short a fantasy.

The BSA is in my estimation a social tragedy. The perpetrators of this tragedy are not to be found at the grass roots level who in my experience largely do their best. Exception exist of course.  The heart of the problem is the BSA is rotten at the core. The professional scouters, the national organization itself is hopelessly backward and dominated by the Mormon Church. Scouting is the official youth activity of Church of Latter day Saints. From this core come directives to ban gay men, women and boys. Atheists are targeted as well. Women fair little better. The "three Gs" are banned. It is a significant problem because in the last two decades the BSA is developing a new image--hate mongers that exclude. Hence my memories as a BSA scout leader are decidedly mixed. Some of my fondest memories of my son's childhood are associated with scouting events. But these memories are sullied by the needless bigotry we encountered. Important events held in inaccessible locations and the rigid refusal to move them in the name of tradition. I remember countless outings to scouting events on scout property without a single accessible bathroom.  Again and again I was told we never had a paralyzed scout or scout leader.  We never had the need to build a ramp or accessible toilet was a constant refrain. Sorry, you can just drop off your son and leave was always the solution. Inclusion? What a joke. Thus I was a bit teary eyed when I saw Tyrrell talk. I was jealous too. Few people were willing to support my efforts when involved with the scouts. I was surely never flown anywhere and given a standing ovation. This makes me wish we people with a disability were as powerful as gay rights groups that I respect and admire. And on this cold spring day I dream of a day when access is assumed and socially supported.

Better off Dead Than Disabled

In the last week a few people have asked if I am going to comment on a day time TV show Dr. Phil. After my experience with Dr. OZ months ago I am gun shy to say the least about weighing in any topic discussed on day time TV. I do not get the allure of day time TV. The only time I would think of turning on the TV during the day would be to follow a breaking national news story or local weather alerts. I cannot imagine siting down in the middle of the day and watching a TV program. So with some trepidation I am going to make some general observations about Dr. Phil and how he recently advocated for the "mercy killing" of people with disabilities.  I will not provide the link to his show. It is simply too offensive. Dr. Phil had a mother, Annette Corriveau, on his show who wanted to euthanasia her children. Yes, she wanted the right to kill her children. Is that putting it too harshly? I think not. Who else was on the show? The lawyer  Geoffrey Fleiger who defended Jack Kevorkian. So much for balance.  What the show was all about was pulling on viewers heart strings. Corriveau's children have Sanfilippo Syndrome. It was not clear what type they have. It was not clear the level of their cognition. It was not clear whether they were in pain. It was not clear what their daily life is like. It was not clear whether they could see or hear. It was not clear how much they are able to communicate. Inconvenient facts such as these only get in the way of the gut wrenching emotion TV programs thrive on.

No hard questions were asked. No one who actually spends time with Corriveau's children were interviewed. No one asked what their daily lives are like. No one asked why they have not left the institution they reside in for over two decades. No one asked Corriveau how she determined her children are suffering--a hard to access fact when she seems them infrequently. Apparently simply visiting her children is too upsetting. Yet Corriveau does the have the time to go on the Dr. Phil show and be interviewed on Canadian TV with Robert Latimer, a man who was convicted of murdering his disabled daughter.  Corriveau is setting herself up to be the expert on when it is acceptable for a parent to kill their children. Worse yet, Canadians seem to be rewriting history as it pertains to Latimer. He is not identified as a convicted murder but as an expert on children and disability. What shocks me is the social support parents receive when they express a desire to kill their children with a disability. Oh, how horrible it must be to raise a special needs child. Oh, how you must suffer. Only these parents know what such a miserable existence parenting a child can entail. I am not exaggerating. When Dr. Phil asked for a show of hands as to who supports Corriveau virtually the entire audience raised their hand. I just hung my head.

I do not know if it is the weak economy, the health care reform debate, or that the divide between rich and poor is expanding daily but these are hard times for people with a disability and by extension anyone else that does not fit into society. I have never truly believed people thought I was better off dead as the disability rights slogan mockingly proclaims. That belief has been shattered in the last two years. I have no doubt people with a disability are perceived to be suffering and those people that have no experience with disability think we should be put out of our misery.  I am not being mellow dramatic. I was offered assisted suicide in an underhanded way in 2010. Next week a paper will be put on line in advance of publication detailing my experience. The point, here is we are well on our way down a slippery slope if the masses are listening and watching people like Dr. Phil and Dr. Oz. Killing people with a disability is not seen as inherently wrong but rather an act of compassion, mercy even.  Great for day time emotional tear jerking TV shows but way short of facts and devoid of reality. The fact is people with a disability lead rich and full lives. I am one of many.  But I am one of many at risk. And that thought keeps me up at night and fearful of accessing the health care system that is hostile to my existence.

TEDMED: Abysmal Transportation at a Great Conference

The above photograph of a Washington DC trolly bus was the bane of my existence at the TEDMED conference I attended. The conference itself was an amazing experience. It was nothing like the anthropology conferences I have been attending since I became a professional anthropologist. Anthropology conferences are bare bones. No swag, sub basic speaker set ups at mid line or cheap hotel/conference centers. Well, last week I learned how the other half lives. I have no idea how much money was poured into the TEDMED conference but it was substantial. And this I suppose reflects the significant sum of money people invest in attending. While I did not shell out anything to attend thanks to the Hastings Center that got me a scholarship, others forked over $5,000. What does this money buy a delegate? Access to the Kennedy Center, a social hub in the form of a huge tent--think circus sized tent, dinner at the Library of Congress, excellent food, meaning breakfast lunch and dinner, and an open bar in the evening. It was the open bar that shocked me. An open bar and anthropologists is a bad mix. Think stupor here!

While I could wax poetic about the facilities and speakers there was one glaring flaw--transportation in the form of buses from my hotel to events all over Washington DC was problematic at best. And here I am being far too polite. Transportation was a disgrace, totally unacceptable. Prior to attending the conference I inquired multiple times about accessible transportation. The first reply was typical. Of course we have accessible transportation. When I inquired as to what that accessible transportation entails I was informed "some buses" have wheelchair lifts. At any other conference I would have interpreted "some buses" to mean you are on your own. We have an accessible bus but have not seen it since the Nixon Administration. However, given the conference was a TEDMED event I had higher hopes and expectations. I will say this about the buses. I was able to get to every event. That is as far as my praise can go. By itself this is an indictment of just how bad bus service is in America for people with a disability.

What I was told before I left for Washington DC was correct. Some buses were accessible. Not many, but some. If each and every bus that had a lift operated and the driver knew how to use the lift  I would have experienced minor inconvenience. But as most people that use a wheelchair know just because a bus has a lift does not mean it works. I would estimate half the wheelchair lifts on "some buses" were not operational. This transformed my transportation experience from being a minor inconvenience to a major problem.

 What problems did I encounter? The usual excuses abounded: "the lift is broken", "the key is missing", "I don't know how to use it", "the tie downs are gone", "I don't know how to use the tie downs" etc. At any other conference or tour of the city this would be expected. But we are not talking about any other conference or city tour. Major funding goes into the TEDMED conference. It is a spectacular conference, speakers uniformly superb, polished even, and all other events were extremely accessible. The Kennedy Center was a delight, bathrooms abounded, staff helpful and professional.

By the end of the second day I realized two things. One, at least two buses and as many as six would pass me by before I could get on. Some accessible buses became a lonely singular bus. I lost a great deal of time simply waiting and watching other delegates get on and off bus after bus after bus. This did not seem to bother any delegate or employees. Second, the transportation supervisor lied to me and was willing to say anything to get me to stop complaining. After watching many buses pass me by I confronted her and told her each and every bus with a lift had to be tested before it was put in service; and be tested by the driver. She said of course we do that. The next bus arrived and the driver told me he had never used a lift a before and had no idea how to operate it. I quickly learned the transportation supervisor was worthless.  The actual drivers were the one's to know. In the end I was able to manage and did not miss any event. However, if I had trouble at a prestigious conference such as TEDMED what takes place at an ordinary conference? What happens to the average tourist with a disability who tries to use a trolly bus? These question make me think back to 2004 when my son and I tried to visit the new Air and Space Museum outside Dulles Airport. Just like I experienced at the TEDMED conference, the bus had a lift but it did not work. Eight years later it appears not much if anything has changed. Lip service is paid to accessible transportation. Try and use those pesky lifts and a new harsher reality emerges.

TEDMED

I am leaving early tomorrow morning for Washington DC. I will be attending the TEDMED conference. Thanks to the Hastings Center I received a full scholarship to attend. Without this support attending the conference would not have been possible. I am going as a delegate and scholar. Sounds impressive. I eagerly await this conference as I often watch the TED Talks. If you are not familiar with them check out You Tube or Netflix. The talks are uniformly engaging. I hope to get some good photos that I will try and post. I am somewhat nervous about transportation. Washington DC and accessible transportation has been problematic at best. There is a stark dichotomy between what is supposed to be accessible and what is actually accessible. I have been assured I will not encounter any problems. Gee, some how I think I have heard this before. Always get worried when I am told not to worry, it is a recipe for disaster.

Growth Attenuation: A Cultural Mess

I consider myself to be a disenfranchised individual. I will never fit into mainstream society. I will never be accepted. My presence always open to question. My humanity will be subject to public debate. My ability doubted and belittled. Bigots abound. They love to accost me in the name of "safety", "concern" and have my best interests at heart. This is an old story. I don't like it and have railed against social injustice for decades. What sobers me is that I am lucky, very lucky. I can defend myself and am quite good at it. I also know the bigotry I encounter is minimal when compared to people, humans, with a cognitive and physical disability. No other population in American receives less support and services. No other population is as stigmatized. This is outrageous. Much can be learned from those who care about people with profound cognitive and physical disabilities. Thus I deeply admire the scholarship of a people like Eva Kittay and Allison C. Carey. I urge you to read Kittay's recent edited volume Cognitive Disability and its Challenge to Moral Philosophy and Carey's wonderful book On the Margins of Citizenship. This provides the academic context but cannot replace touching thought provoking blogs such as Life With a Severely Disabled Daughter and Single Dad, Disabled Daughter that detail what it is like to parent a person with a profound cognitive and physically disability. This bring me to why I am posting today.

Within the past 48 hours I have read two posts on growth attenuation no doubt in part inspired by the articles in the Guardian (see my posts on March 15 and 16). Both writers are adamantly opposed to growth attenuation. Both are passionate about their opposition. Single Dad Disabled Daughter writes that he considers growth attenuation to be "immoral mutilation". The words mutilation were used when growth attenuation exploded in the news but its usage has waned as has the moral outrage. I do not know if the lack of moral condemnation is good or bad or somewhere in between. I do know that in spite of the efforts of the Seattle Working Group and the publication of their paper in the Hastings Center report on growth attenuation it firmly remains a polarizing issue. It also highlights how poorly understood disability is from a cultural standpoint. Equality and an inclusive society is not to be found in blue wheelchair logos, ramps, elevators, and wheelchair lifts. Obviously our physical environment is far more accessible and the law is firmly in our favor. But this only gets people with a disability so far. Utterly absent is cultural acceptance and a social mandate to protect the rights of people with a disability--any disability.

In referring to his severely disabled daughter Single Dad writes: "We don�t need just physical accessibility. Nowadays there is a lot of that. But when was the last time you saw an adult changing table anywhere other than my house? Even �family bathrooms� (and I just learned what they are) may have infant changing tables, useless to us. Where is there a quiet place, if needed, anywhere for the disabled? Pearlsky loves IKEA and Home Depot and the symphony, but sometimes it becomes a bit much. How fast can we get back to our van? There is no other place to escape to. If I could just pick her up � We need either mental accessibility, growth attenuation, or � what we have now."

Sorry but no. Just no. No! Mental accessibility is decades away. By this I suspect Single Dad means cultural acceptance and inclusion I referred to above. He cannot find a changing table for an adult because there is no social mandate for it to exist. He cannot find a quiet place because people do want those with a cognitive and physical disability to be in their mix. He cannot get on a plane because the airline industry has been hostile people with a disability for decades. This is not a question of architecture but rather a society deciding the best way to cope with people like his daughter is to exclude them. Shunt them off to group homes or resource rooms in schools, transport them on short buses. The message is very clear. Segregation is socially accepted. People with a disability, especially those with a cognitive disability, are different, not equal.

Is growth attenuation needed? In a word, no. Could it in exceedingly rare instances after all other avenues of care have been exhausted be appropriate? This is possible. I am not willing to put an outright ban on growth attenuation as such absolutes make me uncomfortable. I will not deny growth attenuation will make caring for a person with a profound cognitive and physical disability physically easier but is that really the answer? I think not. How about appropriate social services or even better comprehensive services. What about providing not just some but all needed adaptive equipment that would make care giving easier. How about community support. How about home modifications designed to meet the needs of the person in their home. None of this is available without a fight. Some simply is a pipe dream--the comprehensive services for instance. Again, this is a social problem.

What we have now in terms of growth attenuation? Again, no. Growth attenuation has gone underground. It is being done in secret and privately. Doctors are avoiding ethic committees, ethical oversight and skirting the law. This is frightening. It is exactly what the Seattle Working Group did not want to happen. If growth attenuation is performed we must study the long range implications. Are children subjected to growth attenuation getting strange cancers as they age like some women have whose growth was attenuated in the 1950s? We can only learn how effective growth attenuation is if it is studied in earnest. Only then can we address if it is truly an effective treatment.

Growth attenuation is a radical treatment. Whether opposed or in favor, there is something deeply unsettling when doctors are removing healthy organs from children. I question whether we are targeting a specific population of people, treating them as a class apart. No one would ever suggest attenuating the growth of a child with typical cognition. The idea is repugnant. But it is a solution for children with profound physical and cognitive disabilities? Worse yet, we willing remove healthy organs yet deny the very same people with cognitive and physical deficits organ transplants as a life saving treatment. To me a very powerful social message is being sent. People with cognitive and physical disabilities are not fully human, they do not have the same human rights. We have been down this road before in America and elsewhere. One example should suffice. Eugenic sterilization. We look back in horror at what took place. Read Edwin Black's searing work, War Against the Weak and be ashamed. But dig deeper and think about one state, North Carolina. Long after eugenic sterilization was discontinued 7600 people were sterilized against their will some as young as 14 years old.

I do not maintain growth attenuation is akin to eugenics. But some of the lessons learned from this dark chapter in American history are worth consideration. Will we look back aghast that we attenuated the growth of children with profound cognitive and physical disabilities? Will the Ashley Treatment be seen in the same light as we now regard to the famed Oliver Wendell Holmes statement about three generations of imbeciles is enough when deciding Buck v. Bell?

I rarely if ever close a post with a quote. Long ago I was taught not to do this. The idea being leave the reader with your own words. But I lack the passion and experience a parent of a child that has a profound cognitive and physical disability. So I end with Claire Roy's forceful words at Life with a Severely Disabled Daughter that I hope will sting readers to the core. I know this is how they affected me.

"We are a stupid people, loathe to study and learn from our collective history. We have burned the witches, strung up the niggers, gassed the kykes, lobotomized the crazies, beat up the faggots all in the name of what was right and good. We look back now, in horror at our primitive ancestors� sins, failing to remove the mote in our own eyes. Disability rights�especially the rights of those most severely affected�are the final frontier of civil rights action. Sadly, I suspect a few more generations of dehumanization of our most vulnerable will pass before any sort of serious political action will take place to bring about real change.
And mark my words, the day will come when we see growth attenuation for the misguided barbarism that it is. On that day, be I the age of Methuselah, I will stand up and point my finger vigorously and without qualms say �I told you so.�

Rationing Health Care: A Policy Approach

Health care is back in the news in a big way. Yesterday President Obama characterized the GOP budget as a thinly veiled form of social Darwinism. Strong rhetoric for sure but also accurate. Republicans are slashing budgets and hurting the people with the least amount of power--people such as the elderly and disabled. Through Paul Ryan the Republicans are waging an all out war against people that are dependent upon Medicare. Republicans want to partially privatize Medicare into a voucher system. Many Americans rely on Medicare, Medicaid and Social Security Disability payments. By rely I mean use this to help pay for prescription medication and wheelchairs. We are not talking about luxuries but rather people's life and ability to function. People like Ryan are playing a dangerous game. The Social safety net is too expensive and poorly run by Washington he cries. Let the states handle it via a voucher system. What Ryan is not stating is that many states are broke. Moreover states can use the money any way they want.

After I read the President's speech I came across an article by Daniel Callahan, "Must We Ration Health Care for the Elderly" in the Journal of Law, Medicine and Ethics. Bear with me as I will get to the connection. Callahan is a major figure in bioethics. He helped found the Hastings Center and is a prolific author. He is also a kind and generous man as I have been fortunate enough to meet him. I have read much of his work and cannot make heads or tails of what he wants. Sometimes I shake my head in wonder and think he wants me and other people with a disability to be dead. We are a serious drain on the economy. Yet, there are other times when he is spot on and I agree with much of what he writes. For instance his views on technology in medicine are thought provoking and I agree with much of what he wrote in his book Taming the Beast. No doubt the health care system is overly reliant on expensive technology. For example, I think we can surely pass on expensive exoskeletons and invest heavily in wheelchair technology.

So what did Callahan have to say about rationing and the elderly? First he considers rationing to be "an organized effort by a public or private institutions (e.g., Medicare or a private insurer) to equitably limit the availability of some desired or needed medical treatments in the name of preserving the economic sustainability of the institution as a whole or equitably distributing a scarce resource." Obviously the key word here is "equitably". Callahan goes on to state:

"First, rationing should be done by policy, not by individual doctors and patients at the bedside. There would otherwise be too much variation in decision making, discrepancies between doctor and patient values, and the possibility of physician bias. Rationing must, that is, be removed from the ordinary doctor-patient relationship and shifted to the policy level. Second, policy must be set by democratic process (which could be accomplished by Congress delegating responsibility to a federal agency). Third, the policy must be carried out in a transparent way. Fourth, there should always be a provision for appeal."

I agree with his first point. I have been subjected to physician bias and it is not only wrong but dangerous. I depart from Callahan on his other points. For example, point two. The democratic process is far from equitable and people with a disability are not part of the discussion that takes place in congress. With regard to points three and four, at a theoretical level I agree. But I do not live in a world of theories. I do not believe any policy will be transparent--well maybe to law makers and lawyers but not to your average person and especially not your average person with a disability. As for appeals, great. Let me just ask how long and involved will they be? Let's say you are turned down for a high end wheelchair cushion and need to use a cheaper alternative that was considered to be adequate. You get a skin breakdown, a bad one. The skin that heals will never be the same. Never.

Callahan also advocates the use of QALY used in Britain. Quality Adjusted Life Years are economically proven to save money. Callahan stated QALY "is a leading means of assessing the cost effectiveness of a treatment. Its use requires careful evidence-based research, which in the U.S. could be provided by a federal agency. Instead of contending as I did in my book that an age would have to be specified for setting limits, I would now use QALYs to determine (but not solely) what they would be, thus using a methodological tool applicable to all age groups." Great but using QALY would establish my life has far less value than a person that can walk. Yes, my life is not as valuable as a person my age who can walk. So who gets treated? Not my crippled ass.

Ryan and Callahan are thinking at a national level. I am not such a thinker or politician. I am a grass roots sort of person. I study culture and how it affects people's every day life. From this microcosm I make observations about the lives of the people I study and where they fit in culturally. There is no doubt in my mind if Ryan's GOP budget is enacted the elderly and disabled will suffer. I am equally certain if we follow Callahan's suggestion on rationing I fear what will happen to the elderly and disabled. Most troubling is Callahan's desire to use QALY. Yes QALY will save a significant amount of money. No doubt about the savings. But at what cost are we saving? I for one do not accept the fact my life has less value than a person who is not paralyzed. Why there is even a law that states this--that pesky legislation know as the ADA. Ryan and Callahan make me shake my head in wonder. What ever happened to equality?

A Small but Important Change

This morning I was reading A Girl with a Cane, a blog I like very much. I noted she added a widget to her blog Odiogo. I down loaded this and hope it solves a long standing problem with my blog. Specifically, some people who are blind have struggled to read the content of my blog. So go ahead and click on Odiogo. Yes you can now listen to a computer generated voice read my blog via itunes. Very cool and I sincerely hope this will solve problems a few blind readers have encountered.

Equality is Illusive

This is not a photo shopped picture. I saw this image on Facebook and thought someone was having fun making a horribly wrong photo. Surely more than 20 years after the ADA was passed into law such a gross violation could never occur. This is wishful thinking at best and at worst pure fantasy. Segregation of people with a disability is not only still present but rampant. The only substantive change I have observed in the last twenty years is the type of prejudice encountered is no longer the same. The violation of disability rights is now couched in ever so polite and legal terms. Institutions know the ADA must be adhered to. Institutions know IDEA meetings must take place. This does not mean institutions want to follow the law or be inclusive. In my opinion, lip service is paid to the law. ADA violations are common place and twenty years post ADA stock replies, excuses, abound. Of course we are committed to being inclusive. Oh how many times I have heard that line used as I was excluded from participating in multiple activities at my son's public school when he was a boy. For instance, one year in elementary school the teacher sent home a note stating she was desperate for parents to go on a filed trip as chaperones. I filled out the form and wrote I would be happy to help. The next day I got a note "You cannot be included but thanks any way". Deeply annoyed, I asked exactly why I was excluded. Another note came home: "Chaperones must be healthy and there is no accessible bus". So much for the ADA. This pattern of exclusion never wavered in my son's public school. Public school administrators hated me and I will confess the sentiment was shared on my part. Inclusion from their point of view was costly and not necessary. I was not advocating for people with a disability but for myself alone. I was perceived to be singularly unusual and selfish in the extreme, a drain on limited resources better spent on students--average students, meaning students without a disability. There was a fundamental miscommunication that was never resolved. The school was, and to the best of my knowledge, remains hostile to the inclusion of parents with a disability.

Given the above, why was I shocked by the image? The exclusion is so stark and so obviously wrong no excuse is possible. This sort of segregation is over the top. It is blatant and makes me shudder. I shudder because it was public. We anthropologists would consider this a humiliation ritual. The group, meaning the audience and participants, do not value the person sitting in the wheelchair. Every man woman and child in attendance learned one thing at this event. Segregation of all people that use a wheelchair is socially acceptable. It is the norm. Inclusion is an ideal we can choose to talk about but it is not really something that is valued or readily achieved. Inclusion is something we get to pick and choose out of the goodness of our heart. Surely I am being too harsh, too demanding, too uppity. All words I have heard levied at me again and again. No, words cannot express my outrage. And like my son's public school, the school this child attends does not get it. Once the above image went viral the school released an apology of sorts. The school in question press release stated:

"It was a regrettable oversight that the student with special needs was not positioned with the rest of his schoolmates during the choral performance. The student has been a member of the chorus for the entire school year and there have been no prior issues. The choral director has cited several reasons why this occurred but accepts responsibility. The matter will be investigated and, if necessary, appropriate personnel action will be taken. That action could include a letter of reprimand and/or sensitivity training."

A regrettable oversight? Reprimand and/or sensitivity training? No excuse can explain away the the public humiliation this child endured. A humiliation sanctioned by the teacher, audience, and participants. No amount of sensitivity training is sufficient. No reprimand too lenient. Blatant bigotry reared its ugly head and the school did not even recognize it. This is as bad as the event itself. Worse yet, I suspect this is the tip of the veritable iceberg. I attended many public school events when my son was little. Children are repeatedly told to be on their best behavior. Notes are sent home about dress codes that cannot be violated. The reality is the teachers and school are putting on a show, a public demonstration celebrating how good the school is. Look at us, we are great. What I want to know is what happens to this student daily. Is he segregated during recess, gym, art class, on the school bus? Most likely. How many regrettable incidents take place when there are no cameras around? How often is he shunted aside during choir practice? Is what he experienced the norm?

The boy's mother said her son was inspired to sing in the choir because of the TV show Glee. I lowered my head in disbelief, deeply saddened. This boy's role model is a fictional television character played by a man without a disability. I again thought of my son's experience as a secondary school student.One day he brought home an assignment about civil rights. Great I thought. I told him to go to my office or the library and pick out a book that was of interest. Did he follow my suggestion? Of course not. He went on line instead and somehow stumbled upon the name Ed Roberts. I was thrilled. He filled out the terrible rubric secondary schools rely upon with a short paragraph about Ed Roberts life and fight for disability rights. The next day the rubric was returned with a short note "The assignment is supposed to be about civil rights. Disability is not an appropriate topic, it is different than real civil rights". And here lies the heart of the problem. There is no social mandate for disability rights. Sure a multitude of laws exist. Laws that are violated daily. Laws that are not valued. Laws that are mocked. Laws that are not even perceived as civil rights legislation. This makes my blood boil. What gets me the most angry are secondary schools that explicitly teach students and adults the segregation of people with a disability is not only acceptable but the norm, mere oversights easily negated by sensitivity training. At no point do students learn about disability rights as civil rights. Until this becomes part of the core curriculum in secondary schools and on college campuses I do not envision change taking place any time soon.