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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.”


Anonymous said...

Bill- I think I have a solution to your problem. You need an artist to write about you & depict people with disabilities in a positive light. After all, that's what writers do- we depict people in ways we consider culturally & artistically relevant to issues that are contemporary in our society. If you are serious about wanting positive depictions of people with disabilities in mainstream media such as Tv programs & movies, then you should make friends with some fiction writers & screen writers, & then you would be able to convince them to portray people with disabilities in a positive light. After all, life follows art. As it has been said, if you want to have a law changed, call a lawyer, but if you want to have all of society changed, call an artist.

P. said...

Accessibility only exists for the more known disabilities, a ramp is something people can understand. There is no accessibility for other disabilities, neurological, developmental, hidden physical disabilities that don't use a wheelchair, etc. There is no place sensory friendly, no place for people with extreme fatigue and/or pain, no fragance free place, no language accessible for someone with ID, you don't find those things even in services created for disabled people, only the typical accessibility. We are not wanted out there but people pretend they are doing a "good thing" for us, because accessibility is considered a favour, not a right.

Most people are not shocked with eugenics, I have people I know that think it's a good idea like abortion, some people I know would not be shocked with three generations of imbeciles is enough. Some don't notice they are talking about human lives, I was told by others that they agree with things that would not allowed me to exist if it was created before or have children but they don't see that, only the disabled would be hurt and whoever they are society decided they don't matter.

The challenges for those with profound disabilities is far more serious but it demands that we examine our notions of humanity and how we refuse to see a group as completely human.

I think a good idea is that if you are not going to do something with the more typical people you don't do the same with another marginalized group, no unecessary surgery for typical children so no unecessary surgery for disabled children, no segregation, etc. It works for other groups too, is a simple notion.

william Peace said...

P. All the lack of accommodations you mention is spot on. The list could be pages long in fact. The ADA is not about the obvious physical stuff people see, elevators, ramps etc. but rathe civil rights legislation. Equal access is not a choice but the law. The vast majority of Americans do not get this.
Mary McBryde Johnson stated the same thing r.e. eugenics. She debated Peter Singer and argued her life had value. Truly bizarre. How many people without a disability screw up their life and yet no debate about their humanity takes place.
Cait, Love your optimism. I just do not share it. Not in these harsh economic times when the arts are perceived to a luxury we cannot afford. Oh, how many times I heard the arts denigrated in the secondary school my son attended. Not sure how to raise the profile of people with a disability when shows like Glee hire non disabled actors to play a disabled character. Seems to me people with a disability are effectively barred from too many of the arts.

Kelly said...

It is Harriet McBryde Johnson, and she was my hero.

I once emailed Peter Singer after an emotional exchange in a literature class where the professor had said you become a human being when you begin to speak. Professor Singer wrote back right away, and he said maybe my severely disabled son, who cannot communicate, is not a person though is definitely a human being.

I've thought about that a lot, personhood, and I decided my son is most definitely a person. I think about growth attenuation for a lot or reasons, and the conclusion I have is that I am glad the option was not presented to me. I would have said no, but I always would have wondered if maybe his life would be more enjoyable to him if he were smaller and more easily brought along through life with me. The fact that I did not ever have the idea to begin with, that I did not turn to his doctors for such a solution says a lot, maybe everything.

william Peace said...

Kelly, The concept of personhood is widely discussed in bioethics among practical philosophers like Singer. I have consistently refused to engage Singer. To do so is inherently unequal. One starts with the premise that my life and others with a disability is open to good natured debate. I too loved McBryde Johnson. She was a brilliant woman and gifted writer.

Anonymous said...

Our human race has deevolved more than ever in history, I believe, with the computer age and social media. People socialize rarely,becoming more cold and narcissistic with a fake world.People are endlessly creating the false selves they would like the world to see,snapping selfies habitually,focusing on others and reality less than ever before.How will people feel with their heads and hearts and minds what is right or wrong in our future until the computer age unravels to get humanity on a track that builds a better person. It seems America is so caught up in creating the best bred animals, plants, material creations, etc, with little thought to what is being created within our race. I hope and pray humanity can get a grip before becoming worse than it has become. Evolution ,I hope, someday will focus on teaching emotional intelligence, teaching about feelings , our own feelings , feelings of others, necessity to really love each other. Am I just so discouraged , that I have lost sight of the light?

william Peace said...

Margie, Your comment makes me think about the future. Growth attenuation is a blight. A social statement that what we see first and foremost is what humans cannot do. I fear for the future. What if growth attenuation becomes widely practiced? Will institutions be filled with thousands of people with severe cognitive deficits? Will some person walk into a ward of small people? If so, I am sure they will condemn what was done.