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 short...show 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.