Presented at the inaugural meeting of the Cultural Studies Association, Oakland, Pennsylvania - June 7, 2003.
As with many people with lifelong disabilities, growing up I tried to distance myself as much as possible from the societally-imposed image of disability. I labored intensively to reach some approximation of that far off, elusive ideal of "normal." Being so distracted by my quest I did not see much of the value, goodness and beauty within my peers with similar disabilities as well as within myself. When I attended disability events, it was pretty much with reluctance, more for the purpose of employment networking than anything else. At one event, however, I found some something more valuable than a job could ever be. That day, in that room, I heard a very dynamic, passionate speaker espouse the authenticity, necessity and worth of disability pride. Although Sieglinde Shapiro was speaking to the masses, her words resounded directly to my inner self, where I lived. For the first time, I felt an identity which was not arbitrarily cast upon me but one which was like a robe of royalty being held for me to slip into voluntarily … which I did. From that moment on, I knew with all of my intellect and sensibility the importance of being part of a culture that has meaning for your inner as well as outer self, a culture that is continuously in maturation: a culture that is reshaped in bits and pieces by each individual – an individual placing herself in a cultural landscape, where she labors, tilling the soil and keeping it fresh and fertile.
Speaking powerfully to the ethos behind this paper is the following quote from The Interpretation of Cultures, by Clifford Geertz (1973, p14): "Understanding a people’s culture exposes their normalness without reducing their particularity. It renders them accessible: setting them in the frame of their own banalities, it dissolves their opacity".
The word "culture" conjures up a set of images reflective of physical localities, particular groupings of people sharing observable, common characteristics and symbolic representations. By referring to everyday artifacts and rituals, these illustrate how a particular population perceives itself in its "native" environment (as well as how it is perceived in broader settings). I stand with anthropologist John H. Bodley (1994 , p. 8), who finds many humanists, and humanistic anthropologists, in agreement that "culture is an observable phenomenon, and a people’s unique possession." It is for this precise reason that individuals who belong to distinct social groups utilize the elastic yet tangible nature of culture to promote, protect and preserve an identity, as well as those ideologies which may not be represented in the larger mainstream mass culture in which they claim residence but may not always feel at "home".
Disciplines have different ‘takes’ on culture, and use it for different purposes. Anthropology, history, philosophy, spirituality, art, linguistics and the whole area of behavioral sciences: for each, culture’s character may seem abstract. Culture gains definition when informed by the common life experiences of particular social groups.
As with many other parallel subcultures (based on, for example, sexual identity or marginal social status), the Disability Culture can seem contrived - fabricated for political purposes. Without grounding in multiple disciplinary perspectives, such as the history of disability activism, or the economic of welfare policy, casual observers fail to recognize the signs of an integral and authentic disability culture.
For example, I have found through my teachings of disability studies as a well as informal social encounters that many who reflexively identify with ‘normal’ popular cultures become weary of social subgroups claiming and naming themselves as a culture. Their argument may be that this culturizing of particular norms and political ideologies is but a parody, even a mockery, of the more centered traditional interpretation of culture. A skeptic’s argument holds that the turn to identity politics by marginal social groups leads to fragmentation and conflicting priorities, sapping the integrity and autonomy of the predominant mainstream culture.
I, however, subscribe to a counter-view. Subcultures, born out of passions and necessity, offer for the mainstream culture a more vivid sense of human nature, a greater wealth of awareness and a broader experiential base. Subcultures run counter to linear thinking; they enlarge the perceptions of people within the subcultures as well as individuals within the dominant mainstream culture; and they may even reveal new insights and connections to members of other subcultures.
Disability is like a Rubik’s Cube: it must be twisted and turned in order to reveal its cultural breadth and depth. Let’s discuss three aspects: a) disability history; b) disability ritual; and the c) artistic symbolism of disability.
A disability take on history reveals a rich vista of human thought and character: the history of a people whose collective identity is forged in continued struggle against the infrastructure of external and intersocial barriers highlights intractable notions and perceptions which are generationally and psychologically inherited, in many cases very literally. This view fleshes out otherwise suppressed aspects of history.
Defending against these seemingly intractable social menaces, we join together in our own cultural rituals or ceremonies, including political demonstrations. ‘Ordinary’ spaces serve as venues for coalition-building, transformed into ritualistic sites worthy of anthropological investigation. Anthropologists and social theorists such as Foucault provide useful analyses of power relations; these may be employed to unpack otherwise undecipherable interactions between people placed in oppressive spaces (institutions, nursing homes, segregated education and residential settings), where residents wage subtle or direct campaigns against institutional protocols, embedded and protected in institutional trappings. Mainstream culture invests in the preservation of oppressive institutions and policies at various scales. Proclaimed as necessary, institutional protocols receive more protection than those who would be the recipients of ‘benevolent care.’
The assumed validity of ‘benevolent’ landscapes where ‘special’ people are ‘helped’ invites stigmatization of the ‘noncompliant.’ Cultural anthropologists would recognize these as survival tactics deployed against the suffocating impacts of power imbalances. In addition, political economists would be able to reveal the structural dependence and mutual oppression of the health care provider and the resident. Only with these dual perspectives on oppression can we understand how the health care worker can be both victimized by the system and at the same time act as an unreflective agent of oppression.
Artistic representations flowing from the disability culture constitute more than just a Disability-centric aesthetic experience. These images, narratives and sculptures reveal that there are many ways of seeing and sensing: the effete, the simple, the complex, the dreadful, the vividly human, the erotic. Disability art as a genre is not just for those who wear the costume of disability. It is paint, print and plaster; ‘the art of the disabled,’ whether operation in the mode of the grotesque or the angelic, has an essence that transcends a particular image of mind and body. It can be appreciated and internalized within the psyche and the human spirit of anyone.
Mainstream culture and the disability culture are inseparable. Our conference sessions, therefore, are exploring conflicts and challenges, both between and beyond these realms … the interactions, the interplays, the polarizations, the unifications, the conquests, the compatibilities, the interdependencies and the autonomies. Only through reciprocal inquiry can mainstream culture and the disability culture gain a mature appreciation for each other.
References:
Bodley, J. H. (1994). Cultural Anthropology: Tribes, states, and the global system. Mountain View, Calif.: Mayfield Pub. Co.
Geertz, C. (1973). The Interpretation of Cultures: selected essays. New York: Basic Books.