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Disability Studies: Interdisciplinary Perspectives|
The politics of spoken languages versus signed languages and the desire for some American deaf people to shun some forms of communication seem especially “Western” and “privileged” to me. In Third World countries, the basic need to survive eliminates many language choices for deaf people. This certainly can result in oppression, especially for those who cannot acquire the most advantageous forms of communication. Yet the push to learn multiple languages is not in itself punitive. This is something that many national deaf communities outside the United States understand. The powerful role America plays in shaping global deaf identities and experiences (and the world in general) may undermine some of the rich, alternative perspectives on human society. Communication is essential for human relations, and—for me—seeking an expansive approach to using every communication option possible holds real potential for empowering all people, deaf and hearing, disabled and nondisabled.
I have been asked how issues of gender, race, and national/cultural identity have influenced what it means to be deaf and/or disabled, and I struggle to find an adequate response. To date, scholars have wrestled with one or two of these factors, but often exclude the multitude of features that shape who we are as individuals and communities. Very few researchers have crossed the national divide to investigate populations outside of their (Western) countries and cultures. This highlights the disconnect between academic study and lived experiences. When I try to imagine ways of answering how gender, race, and culture shape the meaning of being deaf and/or disabled, I find myself returning to the one source I know: my own lived experience. I know that I think differently from African Americans born deaf (and hearing), in part because the weight of history and culture is different for me. This is probably why many Americans have told me I do not have the “minority mentality.” Similarly, I do not embody a fully (Western) minority model understanding of being deaf and black. That I am unable to apply existing categories and interpretive models easily to my own life perhaps serves as a reminder that our identities are fluid and deeply individual, and possibly points to new areas of research and theoretical development. What would Deaf or Disability Studies look like if they took my experiences seriously as a starting point for analysis?
One example of how this complexity plays out in my own life involves technology. I recently decided to have a cochlear implant (CI). This may have surprised some people. After all, I represent a “truly successful American deaf person”: I have earned advanced degrees, hold a professorship at Gallaudet University, enjoy close ties to the deaf cultural world, and am married to a deaf person who also signs. I ultimately chose to have the implant surgery because, as I have said, being deaf is primarily a disability in my everyday life, even though my work environment is deaf-centric. However, outside that cocoon (and it is one), there’s a whole wide world, and it’s hard for me to fit in. I did it for my (hearing) kids, because I want to be able to fit into their world, to enjoy the music they do, to be able to converse with other soccer/fencing/football parents, to volunteer in their schools and not feel like I need an interpreter every time. Even though I have a CI, I’m still deaf and I would be the last to deny that. Most of my friends are deaf, I enjoy being in the deaf world, and I enjoy and love sign language. I don’t see having a CI as denying my deafness; it simply enhances my ability to interact better with the broader world. I understand it as another tool, akin to my facility with multiple languages. In this sense it reflects my long-held desire to reduce barriers between myself and others.
The evolution of CI technology also reflects an important—but understudied—part of deaf history. Centuries ago there were hearing trumpets, which gave way to cumbersome hearing aids until digital aids were invented. Many deaf people, including those who identify as culturally deaf, have made use of these and other assistive technologies. For me, availing myself of technologies, including closed captioning, email, and cochlear implants, opens avenues for experiences but does not fundamentally alter my identity as a deaf person. I find it interesting that choosing to have laser surgery, which has improved my eyesight, draws little or no attention from others, deaf or disabled, but other procedures, such as a CI, are viewed by some as altering who I am at the core. I have found that both of these medical procedures enhance my abilities and potential but do not change my cultural identity.
Although identities are fluid and people’s ideas and self-representations may evolve over time, I do not feel that my beliefs about being deaf and disabled have changed much. I think I have always had the sense that deaf and disability are the same, although, because deafness is “invisible,” it may appear different or be experienced differently from other disabilities. Still, that doesn’t make it any less real, and one could argue that each experience of disability is unique, yet all of us who have disabilities share certain ties. Now that I have kids and my implant, I see more vividly how much I really was missing before I had the procedure. Perhaps in this sense I have adopted a more disability-framed understanding of the world rather than just a cultural view of deafness. This is especially true when I deal with hearing people. But the fluidity of identity, and my natural connection to multiple cultures, makes it very natural for me to claim a culturally deaf identity as well.
My hope is that scholars in both Deaf and Disability Studies will attend to the very individual and richly diverse nature of lived experience. My own life story has taught me that a person’s background—whether one comes from a hearing or a deaf family, whether a person attended a school for the deaf or mainstream programs, and even where one grew up—strongly shapes the meaning of identity terms like deaf or disabled. Some of us from developing countries, for example, may have a different view on bodily and mental conditions than people from Western countries. I say this having lived in both, and having attended World Federation of the Deaf (WFD) conferences in the past.
I remember a WFD Congress in Spain in 2007 in which my and another person’s presentations were the only two that examined economic issues—helping deaf people become economically self-sufficient. All the other papers were about the higher-order needs, such as passing legislation on language rights and self-fulfillment. I found myself thinking “no wonder so few deaf people from developing countries attend those conferences!”