As I am not an anthropologist, sociologist or historian, I make no claim to understanding culture from any of those perspectives. As a psychologist, however, I have become interested in the impact of culture on the emotional well-being of individuals. Moreover, my interest is deepened by my own minority group membership (Disabled people).
My former work as a clinical psychologist spanned sixteen years and hundreds of clients ranging in age from adolescence through end-of-life, both with disabilities and without. Having conducted my doctoral research on identity development, I was often concerned with the pressures and rewards of minority group identity in my clients. Particularly, I was impressed by the way cultural affiliation mediated the effects of social devaluation in persons from the African American, Latino, Asian, non-Christian, and gay communities.
In the mid 1980's, I accepted an invitation to attend shabbat at a Jewish temple recognized for its efforts to integrate people with disabilities into its activities. It turned out to be a great opportunity for an "outsider" like me to learn more about Jewish cultural expression. The evening left an indelible mark. I saw how re-telling history and folklore, explaining symbols, sharing rituals, teaching customs to children, and how eating, laughing, weeping, embracing, and singing together united and fortified a diverse minority community in the space of three hours!
That year, I also attended an incredible disability community event in Southern California: the mournful yet triumphant commemoration of the annihilation of more than two hundred thousand Disabled people in Hitler's Germany. A Deaf survivor of the holocaust recounted the horror and destruction of her people. We (Deaf, physically and cognitively Disabled participants) lit candles, told the story, viewed the photos, cried together and proclaimed to each other "Never again!" It was the first official Disabled people's cultural event I had ever attended.
Also that year, I began to present publicly my thoughts about disability culture. I addressed a chapter meeting of the California Association of the Physically Handicapped (CAPH).
Using a family model to describe our orphan-like dependence on an arrogant, rejecting able-centric parent culture, I suggested to the twenty-some assembled members that we could oppose our social devaluation through developing a strong disability community-family and elaborating a proud disability culture. To my amazement, the majority of my audience broke into tears. They spontaneously took turns describing their ideal of a disability culture and how it would heal them.
A few months later, I did the cover featured interview with Disability Rag on the benefits of focusing on disability culture. It failed to generate much direct reader response, but Disabled people across the country still pull that issue out of their briefcases and wheelchair bags to show me that they've kept it.
THE FUNCTIONS OF A DISABILITY CULTURE:
From the time of the CAPH speech, I have focused on four major functions served by the development of a disability culture.
1) Fortification - The definition and expression of our value as a community charges us up and enriches our lives, giving us energy and endurance against oppression.
2) Unification - As we hear ad nauseam, people with disabilities are a heterogeneous community encompassing different ages, races, genders, socio-economic statuses, etc. The expression of our beliefs and heritage in cultural activities, however, brings us together, encourages mutual support and underscores our common values.
3) Communication - Our developing art, language, symbols, and rituals help us articulate to the world and signal to each other who we are as a distinct people.
4) Recruitment - The expression of our culture is a positive and defiant conversion of our social marginalization into a celebration of our distinctness. It encourages people with disabilities (particularly new and young Disabled persons) to "come out" as part of the community, allowing them finally to integrate their disabilities into their individual identities and offering them a sense of group "belonging."
I have been constructing a list of the core values of the disability culture - the values that undergird our political struggles, that are reflected in our art, conversations, goals and behaviors. They include:
1) An acceptance of human differences (e.g., physical, functional, racial, intellectual, economic/class).
2) A matter-of-fact orientation toward helping; an acceptance of human vulnerability and interdependence as part of life.
3) A tolerance for lack of resolution, for dealing with the unpredictable and living with unknowns or less-than-desired outcomes.
4) Disability humor - the ability to laugh at the oppressor and our own situations, to find something absurdly hilarious in almost anything, however dire.
5) Skill in managing multiple problems, systems, technology and assistants.
6) A sophisticated future orientation; an ability to construct complex plans taking into account multiple contingencies and realistically anticipated obstacles.
7) A carefully honed capacity for closure in interpersonal communication; the ability to read others' attitudes and conflicts in order to sort out, fill in the gaps and grasp the latent meaning in contradictory social messages.
8) A flexible, adaptive approach to tasks; a creativity stimulated by both limited resources and experience with untraditional modes of operating.
DISABILITY CULTURE - WHAT IS IT?
It is not simply the shared experience of oppression. If that were all our culture was, I would agree with those who doubt the probability of a disability culture. The elements of our culture include, certainly, our longstanding social oppression, but also our emerging art and humor, our piecing together of our history, our evolving language and symbols, our remarkably unified worldview, beliefs and values, and our strategies for surviving and thriving. I use the word "remarkable" because I find that the most compelling evidence of a disability culture is the vitality and universality of these elements despite generations of crushing poverty, social isolation, lack of education, silencing, imposed immobility, and relentless instruction in hating ourselves and each other.
Our culture has been submerged by the profundity of our oppression and the forces that have divided us from each other. But any time disabled people have been able to come together, culture has flourished - in hospital wards, in special schools, at charity camps, during sit-ins, during creative workshops, in peer-support groups, in the hotel corridors of disability conferences, in jail. Furthermore, these scattered spurts of cultural development bear a significant resemblance to each other. For example, a Disabled woman in the southern states described the themes of her childhood play with other Disabled girls in an orthopedic hospital. She recalled the creativity, cooperation, and multi-level humor satirizing the nondisabled culture that she and her playmates employed to cope with their marginalization and to promote group spirit. Her story was remarkably similar to that of a Disabled friend from Scandinavia.
At SDS in 1994, Larry Voss and I quoted interview responses from Disabled adult participants in our education study. Afterward, we were swamped by members of the audience from across the U.S. and from Japan and Canada who said their experiences and interpretations of those experiences had been virtually identical to our interviewees.
The disability rights and independent living movements have accelerated the transmission of our culture. As I travel around the country or speak by phone to Disabled persons overseas, I am struck by the common usage and understanding of such terms as "AB," "supercrip," "overcoming," "medical model," and such concepts as crip time, normalization, and passing. Our emotional reactions and beliefs regarding issues such as eugenic abortion, nursing homes, community access, entitlement to accommodation, media images and "special" anything are becoming universal. This is due, I believe, not only to our exchange of more information, but also to our transmission of values about life with a disability.
Maybe "culture" is not the proper term for a set of elements deriving from a mixture of: 1) inherent differences; 2) societal treatment; and 3) transmitted facts, interpretations, and preferences. But what better term is there for that collection of common views and expressions that increasingly characterize Disabled people everywhere? What else do you call that familiar, comfortable rhythm of shared meanings that Disabled people, even strangers, fall into when they meet? That wide-ranging compatibility is difficult to convey to those outside of our community, however sensitive they may be to disability rights issues. (Maybe that is one reason that some of our most aware non-disabled allies and Disabled persons who are fighting hard to "make it" in the majority culture oppose the notion of disability culture.) Several Disabled individuals I know have independently referred to that in-sync feeling (when in the company of other Disabled persons) as "coming home."
I have also noticed that once we began to attach to these common elements the label "culture," Disabled people of all kinds began to rally behind it with a fervor I have rarely seen. In less than a decade, "disability culture" has become a popular term among our people whether activist or not, young or old, scholarly or undereducated. I detect an underlying assertion in this embrace of the term that goes something like, "Yes, we have learned something important about life from being Disabled that makes us unique yet affirms our common humanity. We refuse any longer to hide our differences. Rather, we will explore, develop and celebrate our distinctness and offer its lessons to the world."