Search This Blog

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.


FridaWrites said...

Last night I was thinking of similar issues with my kids' school.

Though not a disability issue, we can see what we're up against with the ways schools refuse to accommodate any physical difference. One example of this is in the refusal to accommodate left-handed strings players, with all kinds of excuses made, from "appearance" to poking one's neighbor's eye out to lack of accommodation in orchestras (i.e., since others discriminate, we need to). Umm, sit the chairs further apart or group left-handers. So almost all left-handed strings players play right-handed, with the exceptions being truly rare. My son wants to play his sister's 3/4 violin next year, and he's left handed. I know it would be difficult for me to bow right handed and that many strings players say they do far better when they learn to play left-handed. Why the resistance? Because they cannot tolerate, for the love of God, anyone being different. We're not pushing this because we can't purchase a left-handed violin on our own right now, but to me the financial aid programs should allow a left-handed option and left-handed students should be given a choice. Some of us are strongly dominant with one hand or the other (as my daughter is with her right hand).

When this kind of difference can't be tolerated, of course they can't tolerate wheelchairs or learning disabilities. The school teachers have also grown up in this system and many of them are black and white thinkers as well since their college major and education rhetoric teaches them to think this way.

My response to, "but we never have anyone disabled come here" is: "because we can't get in or don't have access!"

william Peace said...

Frida, Your comments about left handedness is astute. It reminds me of an experience I had in the Boy Scouts. We purchased a few archery bows. It turned ou we had a high number of lefties--at least four boys. In spite of this, we never bought a single left handed bow. Too expensive and it would not be used was the justification. Now this sure does sound familiar. No ramps are needed or bus lifts because we have no kids that use a wheelchair. Duh, why are no kids with a disability present? No ramps and no lifts. The entire educational system in this country is profoundly flawed. A business model instituted by Bush has been a disaster. Obama can not possibly do any worse.

me said...

Thanks for this post. Where is the Berube quotation from?

FridaWrites said...

With secondary schools, drill teams, marching band, and other activities require a high degree of conformity (makeup has to be the same brand and applied the same way, weigh ins--hello anorexia). With band, people's personalities often start grouping by the type of instrument they play. The message to students tends to be that you are cattle herded through a chute between classes. Be alike. Mooooo. Wheelchair? Moooo. If you can't fit in the chute, you either have to stand outside it or are shoved through it whether your chair fits or not. Stampeded sometimes.

Me to husband: soooooo, do you guys have left-handed archery bows? The Cub Fun Day site is not wheelchair accessible, so I don't know. Even though we've had a couple of cubs in wheelchairs!

william Peace said...

Stephanie, The Berube quote is in the essay "Ethics Matter, Disability Studies: Exploring the Full Range of Human Life. It is in the Penn State Rock Ethics Institute website. It is a a great very short essay.

Frida, The Cub scouts and Boy scouts are very different even though the BSA is in charge of both. The Cub scouts are run by parents and nothing but trouble in terms of disability. The Boy scouts are run by the boys. Thus it is an organizational disaster but access is rarely an issue. The boys actually value access and inclusion--or the boys in our troop do.

Yes, they make left handed bow just like desks in classrooms.

Claire said...

I am yet unable to properly express what I am thinking about in terms of full inclusion and what you are talking about as the opposite...yet I know we share similar frustrations. In our area it is a full inclusion philosophy that keeps my child and children like her unable to attend school...because in "fully accepting diversity as the norm" they end up denying the reality of severe multiple challenges, i.e., cognitive and physical...which precludes successful and joyful participation in a school community. Sure, you can get around in a wheelchair, but if you have sensory issues and can't handle a regular classroom environment...too bad...because you belong in a regular classroom, because we are just so darned progressive...I lack subtlety here but I think you get my drift.

william Peace said...

Claire, Yes, I get your drift. I also share your frustration. For some children with cognitive and physical disability the chaos of a school environment can be overwhelming and too much to bear. I have seen kids have major melt downs due to stimulation over load at adaptive ski centers. It is an experience I will not forget. There must be a way to incorporate or education such kids--where and how is the key issue. To me this gets to a the larger issue I have repeated here many times--is educating children with cognitive and physical disabilities a priority. Sadly, the answer is no if a child's need are perceived to be outside the norm and hence too expensive. We each want the same thing--education and approach it differently.

Annie said...

Your point about the absence of conversation about disability in schools is thought provoking. Despite growing up in san francisco and attending what had to be some of the most PC of schools, disabilities were simply never talked about. These were schools that welcomed speakers on transgender politics, had multiple teachers arrested during the war protests, and had a twice-yearly "diversity day". I don't think disability and issues of inclusion were intentionally absent from discussion, it's just that nobody thought to include them--far from avoiding them, many administrators didn't even know these issues existed. In the same way, schools claim that they don't have to make accommodations simply because they do not have any students in wheelchairs in their district, without exploring why that might be (hint: the two issues are connected. shocking, i know)

I don't know how you would go about incorporating disabilities and issues of inclusion in schools. Many schools wait until they have a token disabled student, which incorrectly individualizes the problem and often focuses exclusively on physical accessibility.

thanks for the great post,

william Peace said...

Annie, The East and West coast of the USA are very different culturally. The San Francisco area is ground zero for disability rights and in stark contrast to the suburbs of New York. There is zero commitment to inclusion and I think it is purposeful. Wheelchair access costs money, "special education" costs money. Neither is valued and if at all possible such expenditures are avoided. Tight budgets make this even more pronounced. Once in a while a kid in my son's school will need to use a wheelchair and the kid and parents are always shocked at how inaccessible the school is. My son must be the go to guy in this regard as he or I am asked for advice. We say the same thing every time--welcome to our world where the law is ignored and your existence is perceived to be a problem. Ignorance of the civil rights of people with a disability is a piss poor excuse as is cost cutting.