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Thursday, April 5, 2012

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.”

Wednesday, April 4, 2012

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.

Sunday, April 1, 2012

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.