The Last Word on Identity?

A month ago when Rachel Cohen-Rottenberg asked me to do a guest post on her blog Journeys with Autism I was stumped. The intent of the post was to "widen the disability perspective". As luck would have it on the same day Rachel wrote to me I received the latest issue of Current Anthropology. The entire issue was devoted to keywords and among them was "identity". I had my topic. Identity has been discussed at length by disability scholars and I thought the subject fit well within Rachel's desire to widen the understanding of disability. I thought the choice may be a bit esoteric but wanted to provide a wider audience with a bit of disability studies theory. Never did I think it would generate a strong response. But a strong response is what I received. Claire Roy (Life with a Severely Disabled Daughter) took me to task and prompted a second post on identity. This in turn prompted Phil Dzialo (Healing, Empowering and Thriving) and Eric (I am a Broken Man You Can't Break Me) from writing about identity as well. Claire, Phil and Eric all have profoundly disabled children. I faithfully read the blogs they maintain for two reasons. First, they are well written and thought provoking. They all write with great passion I envy. Second, their voices, those who care for profoundly disabled children and the adults they become, is largely ignored in disability studies and disability rights.

With this preamble, let me address why identity in terms of disability is important and where it fits within disability history. But I do not want to just look back, I also intend to look into the future. In my life time I identify two distinct eras in disability history. This is not an original observation. Indeed, I am building on the work of the historian and disability studies scholar Paul Longmore. Longmore wrote the first phase of disability history concerned a quest for civil rights. One could debate how successful the first phase was given how often the ADA and forty years of similar legislation has been ignored, broken and eviscerated by the Supreme Court. Even with this jaundiced assessment of the ADA it is important legislation in that the law, our civil rights, are theoretically protected. In short, the law is on our side. Another reason the ADA is important is that it is not designed to "help the handicapped" as earlier legislation was designed to do. The ADA was first and foremost civil rights legislation that aimed to empower people with disabilities. By itself this was a radical departure legally and socially and It has met with stiff resistance. People with disabilities railed against injustice and bigotry. They were politically active and took to the streets across the country. Denver, Washington, New York and other cities witnessed moving acts of civil disobedience that led to real social change. To get a sense of the disability rights movement in this regard read the archived pages of the Ragged Edge or better yet go on line to the Disability Rights and Education Defense Fund and watch the videos of protests from the 1970s. It becomes clear for the first time in American history people with disabilities were forcefully rejecting accepted notions and stereotypes about disability. I vividly recall this era as I was in college. We students with disabilities were pissed and without even knowing were forging a new identity. Yes, there is that word identity. Millions of people with disabilities across the country completely changed. No longer were we tragic figures, patients or clients of the state. No sir. We were disabled and proud. We had rights and we lobbied to pass laws to protect our civil rights.

In the words of Paul Longmore, "The first phase sought to move disabled people from the margins of society into the mainstream by demanding that discrimination be outlawed and that access and accommodations be mandated. The first phase argued for social inclusion. The second phase has asserted the necessity for self-determination." The repudiation of the medical model of disability and stigma associate with disability is easy to illustrate and is self evident. The quest for self definition and disability identity is far more complex to grasp. To this day, disability identity is poorly understood. In part this lack of understanding illustrates the utter failure of disability studies within academia and beyond. Disability studies scholars have delved deeply into identity issues and yet the general public and large swaths of people with disabilities have no clue such a literature exists. Scholars such as Simi Linton, author of Claiming Disability, should be a household name but instead is unknown outside of disability studies. One reason disability studies has failed to resonate with others is it has completely divorced itself from the disability rights movement from which it emerged. This is a huge problem because disability scholars should be shedding light on disability identity.

As I perceive it, disability identity is a collective process that seeks to reinterpret old or antiquated notions. As such it is perfect fodder for an anthropologist such as myself. Like Bob Murphy before me, I can act as informant and ethnographer. And what do I see as it relates to disability identity? Total confusion. The vast majority have no clue what "Disabled and Proud" or "Deaf Pride
means. The result is a jaded view point. For example, Phil Dzialo has written in Disability Identity: A Good Idea Gone Awry?:

"I am a man! I am gay! I am black or Latina! I am a victim of abuse! I am a feminist! I am an alien! I am a born-again Christian! I am Jewish! I am a witch! I am a polygamist! I am a dork! I am disabled! I am fat and proud! And what do these "I am" statements convey about identity (if identity is a true attempt to define the Self)...not much. They classify, they categorize, they define which box to file the form into. Fundamentally, group identities de-humanize and de-personalize."

Dzialo has a point but I shudder to think what would have happened during the 1960s civil rights era if all the identities he mentions above did not perceive they had some sort of collective identity. Would Rosa Parks be unknown? Would segregation still exist? Would gays and women have equal rights? Would the ADA have been passed into law? But Dzialo is onto something here. I would suggest the time has come to move beyond not only the first but second phase of disability history. The law is on our side and there is a hazy idea disability identity exists. To me what is needed is a vibrant disability culture. We people with a disability all share a common history of oppression. We all share a struggle to be included, respected. We all rail against social injustice. We all fight for adequate social supports. We all struggle to access adequate health care. We all struggle against social oblivion. We all have experienced gross violations of our civil rights and very humanity. We all have a common bond. And most importantly we all need to come together. If we do not do this we will never be equal. So this is my call, the emergence of a third era of disability history, the emergence of a vibrant disability culture.