On Deafness and Disability
The Hearing Loss Californian Summer 2010
©Rhianon Elan Gutierrez
In the past three years that I have been a disability activist, I have constantly been reshaping my views on disability—from labels and language to social practices. I’ve analyzed how they influence each other and how they need to be transformed. Labeling becomes very complex when considering the definition of disability itself. The medical model focuses on the identification and correction of impairments, while the social model focuses on how we create things that exclude people with different abilities from having full inclusion. The medical model is not incorrect in its recognition of impairments (because it is true that some of us can’t see, hear, walk, or comprehend based on socially defined “norms”), but its fallacy is that it repeatedly attempts to categorize and normalize people to such an extent that the person and their complexities (political, emotional, and aesthetic) become secondary. The person becomes a label. When considering the social model, there’s a particular quote that I like from an issue in New Internationalist: “Disability isn’t primarily about the physical, mental, or intellectual impairments associated with it, but about society’s response to them.” Cultures construct rules and physical structures that include and exclude certain groups of people, and people with disabilities are historically and systematically excluded all over the world. Our longstanding ideologies of power and perfection have produced a cycle of labeling which has resulted in exclusion and control. As people are oppressed, minority groups form, united by their shared experiences of oppression and ability. This minority group formation has produced cultures who communicate through shared languages and ideologies. Participation in the activities of minority cultures and the use of their language can and have produced powerful paradoxes of mutual understanding and tension, progress and resistance, solidarity and struggle, and empowerment and fear. Both the dominant culture and subculture actively engage in the labeling of “us” and “them”. When a subculture gains visibility and power in the larger, dominant culture, I believe that its power lies in what its shared experiences transform in the dominant culture. The fight of Americans with mobility disabilities for accessible buses is such an example. I’ve learned that the sense of community that one feels within a culture can shape a person’s identity in ways that are painful, transformative, and beautiful. I have been transformed by my interactions with people who are Deaf, hard of hearing, oral deaf, and especially all people with disabilities. We all dance with adversity on a daily basis. When I identify as a person with a disability, I am expressing my solidarity with others who have experienced the oppression of inaccessibility in physical spaces and the redundancy of stereotypical and melodramatic representations of disability. Best of all, I am expressing the pride that comes with accepting my body in all its abilities and the empowered storytelling that results from shared life experiences.
I’ve thought about how a person views his or her body specifically as it relates to disability and the concept of wholeness. Wholeness is all about what one thinks and feels because both have everything to do with how one sees oneself and other people in the world. For those who are late-deafened and have acquired disabilities, the concept of wholeness is challenged by what existed before and what one has now, and for people with lifelong disabilities and even those without documented disabilities (the so-called “able-bodied”), wholeness is challenged by both psychological expectations and social barriers. I see myself as an important person in this world with a great deal to contribute. I see myself as a whole person. If a medicine were to be available tomorrow that cured my ears, making me completely “hearing”, I would not take it. My deafness has made me who I am. It has transformed the way that I look at the world and the compassion and loyalty that I feel towards people. It has helped me to be a better communicator and a better listener. I probably wouldn’t have said this when I struggled with my hearing aids five years ago, but I say it today with my cochlear implant, which has indeed helped me to comprehend sound on levels that I could not with my hearing aids. My one implant is by no means a permanent cure—but it gives me enough sounds that I work hard to understand, and I am still reminded every night about my deafness when I take it off. I believe that if we actually attempted to communicate our experiences with each other more often than redrawing binary lines, then perhaps there would be more shifting in thought and behavior. My work as a filmmaker and activist is influenced by my desire to challenge these lines and transform outdated, exclusionary practices and policies.