According to traditional thought, disabilities are impairments to be cured through medical intervention. In practice, people with significant disabilities are treated at best by the medical industry as diseases to be cured, and more often, since most disabilities cannot be cured, as incapable and undeserving of optimal and self-directed care. This is a significant issue for people with disabilities, not only regarding access to healthcare. The significant underestimation of the abilities and life quality of people with disabilities has led to a state in which the evaluation of people with disabilities by medical professionals, so highly valued by society, has come to infringe on basic human and civil rights.
The Independent Living Model sees the problem differently and understands disability as a construct of society. In this model, the problem lies in the environment, not the individual. Though many people have physical, intellectual, or mental attributes that deviate from the ‘norm,’ disability is manifested in society through purposefully created and maintained physical, programmatic, and attitudinal barriers. People with disabilities do not see themselves as problems to be solved, and ask only for the same human and civil rights enjoyed by others. Remarkably, this viewpoint is not generally accepted in society today and the Medical Model is still so deeply ingrained in us as a society that people with disabilities may spend their entire lives in nursing facilities often described as “tortuous” or even be refused treatment at a hospital, and at a professional’s discretion, denied life-saving “futile care”.
The Independent Living Model is not about denial of disability, but acceptance that discrimination would fade into a thing of the past if we worked as a society to include principles of universal design and the elimination of attitudinal barriers based on perceived difference.
But real discrimination does exist because of perceived difference and active resistance to inclusion. This discrimination gives rise to a common experience of disability, and thus disability culture. The Independent Living Model strives to eliminate discrimination by creating a society open to all people, regardless of labels, diagnoses, and society's gross misconceptions about life with a disability and people with disabilities themselves.
"Disability Culture - What is It?"
Excerpted from "A Psychological View of Disability Culture" by Carol J. Gill, 1995
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."
