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Thursday, May 7, 2009

Disability as a Complex Cultural Construction

Do not be concerned by the title of my post. I am not going to write an overly intellectual analysis of disability as a social construct. This has been done already, is rigorous to read, and ever so academic. We need this sort of scholarship and devotees of the Society of Disability Studies and its flagship journal, Disability Studies Quarterly, regularly produce such work. Shoot, I have produced this sort of work. I will even admit I like writing dense academic analysis. If you doubt me read my intellectual biography of Leslie A. White, a book that my son described as "historic in its ability to bore everyone except anthropologists".

This post was inspired by a conversation with my neighbor. This woman likes me and thinks I should lecture to schools about disability. I tried to explain that no secondary school in America and especially those near my home want to acknowledge much less hear what I have to say. Disability rights as a social construct does not exist in secondary schools. Civil rights of minority groups is okay, it is discussed and read about. The rights of women, yes, this too is acceptable within reason (those pesky feminists can be too extreme so words like vagina must be avoided at all costs). The rights of gay people are acknowledged, homophobia discouraged but watered down to the point the discussion is worthless. Nowhere is there room for disability rights. I am torn on this. What is taught about disability in secondary schools is limited to thirty year old archetypes and the idea of "overcoming" disability is deeply entrenched. If anything, this sort of information is counter productive. Yet I wonder do kids in secondary school have the social and intellectual skills to really understand the ramifications of disability? If they are like my son with a direct relationship to a person that has a disability the answer is an unwavering yes. But this is not the norm--there are not exactly a whole lot of paralyzed fathers in the world. I wish I had the answer to this problem and, as is my penchant, I spent last night reading and searching for an answer. Thus I was struck when I read the words of Michael Berube. He wrote:

The ethics of disability raise profound and vexing questions about the values and practices through which we comprehend the many varieties of human embodiment and human consciousness. Disability is at once ubiquitous and elusive: once we consider its myriad forms, not only as medical syndromes but as variables that structure human social and environmental arrangements, we begin to understand just how difficult it is to understand the subject of disability itself.

Subtle and ubiquitous is not in the realm of secondary education. Kids love black and white answers and sadly if it is not on the test they don't want to know anything about it. Frankly, given the number of standardized tests kids are forced to take I cannot find fault in their thinking. Yet school are teaching lessons about disability and none of them are good. Which is more important, pristine athletic facilities or a working elevator and lift on the school bus? Athletics win each and every time. The lesson learned is quite clear: when the budget is tight the first line item to be cut is wheelchair access or expenditures on "special education". Is this legal? No and when I point this out at school board meetings I am perceived as "difficult" or "narcisstic". In response people love to point out "we do not have a single student that uses a wheelchair in the district". What they are really saying is "you are selfish and wasting money better spent elsewhere, preferably on my kids". In reply I point out there is a reason no students that use a wheelchair attend the school--access is not valued and profound obstacles exist. Any parent with a child that use a wheelchair will only need to visit the school once to learn access is simply non existent. A child would have access to one bathroom in the nurses office, could not get on any bus except the "short bus" that is stigmatized, the elevator rarely works, etc. I could go on but you get the point.

This is what Berube is writing about in the quote above: our culture and physical environment is not easy to navigate from a wheelchair. Inclusion, socially and practically, is hostile to the presence of people with a disability. Kids may not be taught this, lip service is paid to disability, but the nitty gritty reality is that disabled bodies, disabled humans, are not welcome. The law may state we must be inclusive but wink wink, this will never happen. Line item # 47 through #50 is quickly and with little thought is rejected. Thus as a parent I never went on class trip with my son. None of the busses the district uses has a wheelchair lift. Would you send your wheelchair using child to such a district? Of course not. Worse yet every child in the school district my son attends knows this. The not so subtle message is segregation of people with a disability is the norm. This lesson worries me: what happens when these kids grow up, become adults and enter the work force. Will they hire a person with a disability? Will they make sure their place of business is accessible? If these adults fall back on their secondary school education the resounding answer to these questions is no. This depresses me. I wonder when will access and disability rights enter the mainstream and be valued by all people. Until this happens change will occur at a glacial pace and the social and practical environment we live in will remain grossly inaccessible for decades to come. Perhaps I should not have read Berube last night. I am pissed off and want to force change down the throats of my son's school district. This will not benefit me that much but rather all the kids that have never attended nor will attend his school.