Yesterday I was delighted to read Stephen Drake's latest blog entry at Not dead Yet entitled "Ann Neumann and Vancouver Sun: Dissing Disability Activists Opposition to Euthanasia". I am a self described bad cripple but I am not one prone to polemics. I leave this to others as my aim is to change people's preconceived notions about disability. My goal is not easy and I shy away from engaging people like Neumann whose writing I find infuriating. Thus I was delighted to read Drake's post and effective skewering of her take on disability rights and assisted suicide. In my opinion Neumann states many interesting things but always seem to take a wrong turn in her analyses. She acknowledges the rights of disabled people and supports their efforts to gain equality. Yet when it comes to opposition to assisted suicide, as an advocate, she takes disability rights activists to task. Two passage below from her blog the Other Spoon should suffice as examples.
Example 1: In "A Look at Disability Rights in North America" Neumann comments on a "hit and miss" article in the Vancouver Sun:
In this increasingly bitter debate, disabled activists claim legalizing assisted suicide would be an ethical "slippery slope" that would lead to all disabled people, no matter the degree of their impairment, being devalued as human beings.
In turn, advocates for assisted suicide maintain the arguments of disabled-rights activists are a misplaced over-reaction to their proposals.
Example 2: In "Jill Stanek and Not Dead Yet Shake Their Fingers at Me, I Respond" Neumann writes:
Giving a mentally-sound, terminal patient with less than six the right to a lethal prescription that they may or may not choose to take when death approaches has nothing to do with the disabled community. Again, I sympathize with the fear and vulnerability the disabled community feels toward the medical industry, the state, and society. But conflating two separate issues is just bad advocacy. With a little (understandable) paranoia thrown in
As for the first example, I have news for Neumann: if I have learned anything in the last thirty years of using a wheelchair it is that all people with a disability are not valued to some degree. There is no slippery slope involved. Just ask any paralyzed person or anyone with a disability. Better yet go to a school board meeting and listen to one and all cluck about the need for equal access and then vote down the need for that expensive elevator or lift on the school bus. There is no over reaction here . Indeed, if disability activists are guilty of anything I would argue we are too passive. We need to be more vigorous in asserting our inalienable rights as citizens.
As for the second example, I doubt Neumann goes through the same mental gymnastics or experience the fear people with a disability do when they go to the doctors office or hospital. Perhaps Neumann can appreciate the difference between the terminally ill and disabled but I assure you most people, doctors included, do not. How else do I explain comments made to me such as "I would be rather be dead than use a wheelchair" or "Are you sure you wish to receive medical treatment" or "How longe have you suffered paralysis?" A clear message is being sent and it is not positive. Indeed, it is deadly and with the right spin can be lethal in some circumstances. My existence is open to question, my life less valuable. This is not paranoia but rather a social fact. Somehow I doubt anyone has openly questioned the value of Nuemann's existence or asked her if she really wished to receive medical treatment. Frankly I do not want Nuemann's sympathy or anyone else's for that matter. What I want is support; support for my civil rights. That support starts at the beginning, middle and end of life. I have not had that support from anyone aside from my family, friends and doctor or two. What an indictment on society. How can something as unimportant as the ability to walk have such profound social consequences. Worse yet when I assert my rights I get called "paranoid" by people like Nuemann with a political goal--the legalization of assisted suicide. This is depressing to me and I sincerely doubt I can sway the views of people such as Nuemann. Hence this why I write more about disability rights than the politics of assisted suicide.
Wednesday, March 17, 2010
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.
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.
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