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Monday, January 17, 2011

Invisible People

My views about disability within an American cultural context have shifted significantly since 2007 when I read about growth attenuation for the first time. I was shocked--stunned that parents and doctors could come up with something the media dubbed the Ashley Treatment. Actually it was not the media but the parents that coined the term on a blog that was deeply disturbing. What disturbed me was not the child in question nor her profound disabilities. Instead it was the parental response and the doctors who accepted a medical model of disability without any consideration of the social implications. That is what does growth attenuation directed at a specific population of people say about American society--a question worth asking given the finality and ethical implications of such a decision. I cannot competently comment on the medical aspects of the Ashley X case. I must trust the doctors charged with the child's care and believe they truly were trying to help the child and family. I can however question their decision making strategies and the assumptions made about what life is like with a disability. Sadly the medical establishment is slow, painfully slow, to acknowledge people with disabilities have the same goals and aspirations as those without a disability. It is as though they, doctors, nurses, social workers, therapists and all those that work in the health industrial complex, cannot look past the given physical deficit and consider that society is as problematic as any disability. What good I would posit is to give advice to a paralyzed person to remain off a pressure sore if they cannot miss work or need to care for their family. Such advise in a social vacuum is worthless. Likewise, why is it that we as a culture fear those with profound cognitive deficits? Why can't we acknowledge people with profound physical and cognitive deficits have inalienable rights? Ashley X had rights and those rights were violated. I have rights and those rights are routinely violated. I am seen by some, few I hope, as damaged goods--a problem that needs to be solved and then quickly forgotten. This is why I have bonded with Ashley--we are different but our rights are the same. The same as all those that walk, talk, and work.

Why do those that walk, talk, and work demonize those with cognitive disabilities? A factor is surely fear. We Americans fiercely protect and defend our independence or what ethicists label autonomy. We will do anything to protect that independence. But what of those that cannot be independent? What do we think of them? Well, based on my reading within the medical realm we do not think of them at all. We create groups homes, special schools, institutions, nursing homes, all warehouses to sanitize society's discomfort. I know this because some people are uncomfortable in my presence. Some would prefer it if I simply died or disappeared. I know this for a fact as I have been told this point blank. I may be stigmatized in the estimation of some but it pales in comparison to those who have profound disabilities like Ashley X. I read many parental blogs written by parents of children with such disabilities and they are moving and heart breaking. I am moved not out of sorrow but of the social isolation having a profoundly disabled child needlessly causes. Why I wonder can these children not be incorporated into schools and other social institutions. The answer is simple--we as a society choose not to. Thus this population is invisible. Claire Roy at Life with a Severely Disabled Child recently wrote:

NOW, show me a picture of a kid in an involved wheelchair, with a vent, a g-tube pump and a suction device. Show me a kid with combined severe cognitive and physical disabilities. Talk about dystonia, spasm, tone, seizures, scoliosis, drop foot, silent aspiration. Show me the parent(s). Show me how they are living. In me something that I can identify with. Show me something that acknowledges the existence of this type of disability and everything it entails. Openly discuss struggles as well as joys. Tell me, tell my kid that what is important is just getting on with our day to day lives as best we can, even without a specific contribution or goal or happy-ending-in-sight. We can be "happy" and "successful" if you broaden the definition of those words.

The images Claire Roy wants to see are nowhere to be found. When I read the above I admired the passion--here is a woman that loves her child unconditionally. She is thus like any other parent that wants what is best for their child. But we as a society have failed Roy, we have failed her daughter, we have failed the father, we have failed the family. These thoughts led me to reread the Hastings Center Report on growth attenuation yet again. I was struck by the similar larger thoughts--and her Roy must be screaming NO! But there is a shared belief between Roy and the Hastings Center Report's findings--findings that have been ignored. Here I refer to the statement that "It is clear that these families [those of children with profound disabilities] 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". Okay, there is no passion here and one could quibble with the language. Regardless, both Roy and the Hastings Center Report decry the lack of support for those with profound disabilities. No group in my estimation is as socially isolated. And let me tell you in recent months I have learned far more than I ever wanted about social isolation. Thus Roy's words hit home hard especially when all I read about are budget cuts that affect the most vulnerable--people like her daughter and, well, me. Like Roy's daughter, my care is compromised by a health care system that poorly equipped to meet the needs of those that are different. In the USA people such as myself are effectively cut off from accessing adequate health insurance. Medical facilities remain grossly inaccessible. For instance, I have never been weighed at a routine check up. In fact I have seen one working scale in the last 30 years. To me this is no different from segregation--and we all know that segregation is inherently unequal. It is the legal bedrock of our educational system. But we people with disabilities are ever so "special". By special I mean segregated and in some cases invisible. I am not invisible nor should Ashley X, or Roy's daughter be invisible. We are humans and as such we have civil rights, human rights according to the UN. I doubt the social struggle parents of those with children with profound disabilities will go away any time soon and I sure as hell know growth attenuation is not the answer. What I am railing against is nothing short of a needless social tragedy. I consider these parent great allies in the struggle for disability rights. And I hope to some day see a real civil rights movement take place--one that will be splashed across the headlines of national newspapers and cause college students to protest. This is perhaps a fantasy as the disability rights movement is virtually a stealth movement--unseen by the mainstream. So aas part of my new found effort to be positive I dream of the day all Americans support the rights of those with a disability.

Sunday, January 16, 2011

At a Lose for Words

I have always considered myself a lucky person. I was blessed with the best parents, great siblings, and have had phenomenal family support my entire life. In college I feel in love with an area of study, anthropology, and have been able to cobble together a career that has been rewarding. I thoroughly enjoy writing and have a decent or perhaps modest publishing record. Teaching college students at Purchase College is rewarding in the extreme. I also have a wonderful son who I love very much. I am proud of him and since he left for college am stunned by his growth and maturity. I joke with others that I have spawned a responsible adult. I live in a nice home an hour from New York City, one of the most cosmopolitan cities in the world. I even have a black lab, Kate, I adore who makes me laugh out loud at least once a day. In short, I have much to be thankful for, especially now as I know without family support I would be in a nursing home. Yet even with all these wonderful things going for me I am pretty much miserable. I feel as though I have no joy in life. For the first time work is not enough. Writing is not enough. Reading is not enough. Television is not enough. XBOX is not enough. I want more. I want my life as I lived it. I am not sure when I will get that life back.

What prompted the above? I saw the plastic surgeon last week. I did not see your average plastic surgeon, I went big time and saw a highly respected surgeon from New York City with lot of experience with flap surgery. He examined my wound and told me that flap surgery is not the panacea many believe it to be. There are some very real down sides to such surgery if things go wrong. I have a wound that is healing, it has great granulation and is in the estimation of many "lovely". The surgeon thinks, though cannot promise, the wound and the troublesome undermining will heal on its own. If the undermining does not fill in it can at a later date be filled in with piece of muscle tissue from my thigh. This sounds pretty reasonable to me. Indeed, this is the first time I have seen a surgeon who did not emphatically state surgery was needed now. I don't know what to make of this. In my mind I had envisioned myself operated on and up and about in a week to ten days. My life returned to me. This fantasy did not take place and has sent me into a tail spin. I feel spent. I have accomplished little since September. I can live with that given how sick I was. What I am struggling with is the unknown. I do not when my wound will heal. It could be four weeks or it could be four months. It could need surgery, it might not. Victor Turner, an anthropologist I like coined the position I am in as being a liminal state. That is I am "betwixt and between"--I am not sick nor am I well. I am home but but home bound unable to function as I once did. I am dependent upon others but independent in many ways. I do not like being liminal. I do not like being on the sidelines looking at the world pass me by. As Robert Murphy wrote in the Body Silent, for many years people with a disability were liminal members of society. This was true in the 1970s and 1980s but somewhere in the 1990s things changed. Our rights were recognized, civil rights, were recognized legally. Sure those rights were ignored, belittled, and trounced upon. But they were acknowledged civil rights. I had the power as did other people with a disability. So without getting too analytical I think what has sent me into my tail spin is the overwhelming sense of being powerless. I cannot make my wound heal. No one can do that. Until that wound heals my life is reduced to a liminal state, one that brings back not so fond memories of when I was first paralyzed and treated as less than a sentient being. This was the norm circa 1978. The medical establishment reigned supreme and knew exactly what people with a disability needed--rehabilitation. They were correct, rehabilitation was needed but they failed miserably at suggesting what to do when it was complete. Worse yet was the paternalism--anything a paralyzed person did that approaches "normal" was an inspiration, a great accomplishment. Oh, how this angered me! I wanted, and once a while did, act out in frustration. I was not alone for anger when directed correctly is a powerful tool--it was what motivated a person like Ed Roberts and led to the founding of the independent living movement.

I do not think there is an answer to my tailspin. I am unhappy, miserable really, and think this is a logical response to my life as it is. Would therapy help? Well, I could do this I suppose over the phone. I hate the phone. I could ask for a prescription from my doctor but does taking a pill really make sense. Again, being sad, upset, and unhappy seems like a reasonable response. I do function--I am eating, bathing, caring for myself. I read, write a little, watch TV, play Halo (I have gotten much better), and get through the day. I just do all of this with no zest. I feel as though this is a dark time and one must remember and survive those dark times. I must remember how I feel now because assuming I am back to normal some day will get an abrasion on my skin. I will want to go to work or out of my home and the vivid recall of being in bed month after month will surely prevent me from getting up and taking a risk with my skin care. Likewise, when I do not feel like checking my skin with a mirror I will recall today and reread this entry. So for now I am content to let myself be miserable. I do my best to hide my unhappiness from others though I am not effective all the time. With those I am close to I talk about this problem--I do not want to fall into the rabbit hole of depression that claims the lives of too many people. I do not think I am there yet meaning a depressed state. That is one place I do not want to go-ever.

What am I doing to change my mood? I am going to do something, I just do not know what that something is. For now, I will try to look at the bright side of life. I envision myself skiing, I check the conditions in Vermont and New Hampshire at my favorite ski resorts. I look at pictures online and try to figure out where the people are. I am investigating custom multi use buckets for paralyzed people that can be used skiing, biking, or kayaking. I follow the New York Rangers closely and get satisfaction they are having a good season. I hope they make a deep run into the playoffs so perhaps I can attend a game with my son or brother. I try to talk to my son when he is not surgically attached to the couch, his computer or consuming mass quantities of food. I watch the birds of prey outside my window ride the thermals and hunt. At night with the outdoor lights on I gaze out at the icicles twinkling that now go from the roof to the ground.This is a first in ten years at my home. I try to invent things to cook in less than 20 minutes that are tasty, loaded with protein and easy to clean up after. When I do all this I am okay. I just need to get better at this and look forward to the day I am up and around and this dark time becomes a bad memory.