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Monday, March 15, 2010

Disability Culture and the Lack of Social Progress

Last month I read an interesting post at the NextStep blog written by Ethan Ellis entitled "Disability: A Culture? A Community? A Political Force?" (February 25). Ellis's post and position have kept me thinking about the existence of disability culture and its importance. Unlike Ellis and many others I think disability culture exists. In fact I would argue a vibrant disability culture is thriving in this country. So why was I not surprised to read that Ellis does not believe disability culture exists. He wrote "people with disabilities are too diverse to form a culture We're geographically dispersed; we don't speak a common language--heck we can't even agree on what to call ourselves; more than half of us get our disabilities in old age and 87% of us became disabled in adulthood." Ellis is hardly alone and has prestigious company in rejecting the notion disability culture exists. For instance in 1999 Supreme Court Justice Ruth Ginsberg wrote "In no sensible way can one rank the large number of diverse individuals with correctable disabilities as a discrete and insular minority." I have but one word for Justice Ginsberg: bull!

I suspect it is commonly accepted that a disability culture does not exist. Part of the reason for this assumption is our inability to precisely define culture. Ask 100 people to define culture and you are likely to get 100 different definitions. Most would agree culture is important and I would maintain it is one of the founding ideas of the social sciences. I was drawn to anthropology in large part because they took culture and its importance seriously. The word itself looms large in anthropological literature. We anthropologists write about cultural traits, cultural complexes, cultural evolution, culture types, culture areas, cultural diffusion, cultural migrations, cultural decay, cultural convergence, etc. In spite of a rich and diverse literature devoted to the concept of culture there is no universal agreement on a single definition of culture. This is both a problem and strength of the discipline and gets me back to disability culture. If we take a traditional view of disability culture, that is compare it to other minority groups such as black Americans we will not measure up. There are no impoverished disability neighborhoods, ethnic foods associated with disability, music, or schools dominated by our presence. Simply put people with a disability do not conform to accepted notions associated with minority groups with a recognized history. But this does not mean disability culture is a myth. I think we people with a disability share a collective cultural identity. By extension then I would argue a disability culture exists. Collective political identification has been a major factor in passing legislation designed to empower people with disabilities for the last 40 years. This collective political identification took place for complex reasons foremost among them self identification and definition. Being disabled in American society is a profoundly different experience. For many, our disability becomes a part of our identity and cannot be separated from the disability experience. Part of the disability experience is social injustice. Barriers are common place today, both social and architectural. Equal access does not exist. Unemployment is rampant. Transportation and housing are grossly unequal. Demeaning beliefs about the impact disability has on one's life remain the norm. This does not mean I feel a kinship with every person with a disability. However, as my mentor Robert Murphy wrote long ago in the Body Silent that "the most lasting benefits of any struggle against perceived oppression are not the tangible gains but the transformation of consciousness of the combatants". This is exactly how I perceive myself--a combatant. It is the other people with a disability that are combatants that form the core of disability culture. We fight less for ourselves than we do for those unable or unwilling to fight for themselves. We fight the good fight, the lonely never ending fight for equality. Such a fight winds us few friends. I know this all too well as I am hardly popular for asserting my rights and pointing out gross injustices.

What I find infuriating is the lack of value placed on inclusion today. Sure we have laws that mandate access but those laws are often ignored and certainly not valued. We do nothing more than than pay lip service to inclusion. Far more time is spent trying to figure out how to legally avoid inclusion than come up with creative ways to be inclusive. People who are different, that is those that cannot walk or do not think and learn at a prescribed rate are a "problem" or worse, "special". This implies we have a choice as to be inclusive or not. How do we justify such exclusionary practices? Here are my top ten reasons:

The ADA is not followed or ignored.
There is no obvious benefit to inclusion.
Accessibility is a technical problem.
Disability is something people do not want to think about or simply fear.
Access is already accomplished.
Disabled are not part of mainstream society.
Accessibility is not cool or ugly.
No disabled people complain or are seen.
Access requires involvement and engagement with disabled people.
There is no “Martin Luther King” of disabled people.

Without a vibrant disability culture I do not think real social progress can be made. We need disability culture to become a legitimate and powerful force at the local, state and federal level. We need to be a presence at all levels to become part of a national dialogue. We are on the cusp of creating such a national dialogue. We are reaching a critical mass of people many whom are like me angry about the social inequities I face every day. The trick is to channel that anger, use it to our benefit and mercilessly point out the gross social injustices that exist. When we do this we will do the hardest thing possible--change the nation's ideology in terms of disability. When this happens I will consider myself equal to all those that walk past me daily.


Claire said...

This is an excellent post. Your specialty in this area is significant in pointing out the challenges around defining the word "culture". I don't know what to say, because my experience of disability is vicarious...that is, through my daughter...and that presents a different perspective altogether. I don't know if this falls under the definition of "culture" (even if broadly interpreted), but I find that parents of kids like mine share similar frustrations, joys, challenges, etc. When these experiences are shared, there is a definite feeling of kinship...a feeling of belonging and of being understood. It's very important to our survival, I have discovered.

william Peace said...

Claire, The unity between yourself without a disability and me with a disability is found in the word kinship. You advocate on your daughter's behalf and share a bond with other parents and people like me. These shared experiences and needless exclusion are part of what makes up disability culture. What we really need to do is open our mind when it comes to this concept and build political and social alliances. Through this we can all be equal--someday.

H said...

Yes! Disability culture is alive and well. Kinship is precisely the term I use to describe my connection to many others with disabilities and their advocates. The vast majority of my friends at college have some sort of medical condition. Two of my friends have invisible disabilities, and when both of those friendships started I had no awareness of their disabilities. Howbeit, I felt ‘pulled’ towards them, their personalities, their outlook on life, and their views of the surrounding social environment. All the indicators of a cultural pull towards a shared experience where there, despite the lack of any visual or verbal confirmation. Disability is intricately meshed with our personalities, because like you said, we are combatants. The cultural pull I feel toward the ‘tribe’ is sturdy and sound. I don’t think the disability culture is going to vanish anytime soon, the rest of society remains a resistant force against us, with few signs of withdrawal.

william Peace said...

Holden, Glad to know you share my views on disability culture. Combatant is a double edged sword as there are times I truly do not want to confront ignorance and bigotry that surround me. But I know I must for the alternative is social isolation that is truly deadly. Keep up the good fight in MA. You have a supporter in NY!

Liz said...

We do have that culture -- and I love how much more visible it is through everyone's blogging. I believe what you're describing is happening - and that we need that culture to have political action and change.