On Deafness and Disability
© Rhianon Elan Gutierrez
Originally published in The Hearing Loss Californian
Summer 2010
My earliest memory is of when I was two years old, curiously reading the Old World Encyclopedia while sitting on my grandmother’s lap. I remember the musky smell of the pages and the fading black and white image of the stage actress Maude Adams.
Not long after this, I lost my hearing. I can’t remember when I first noticed the difference in sounds, but I already knew how to speak and was naturally curious about language and people. This curiosity intensified because of my hearing loss, and wherever my eyes focused, they were reading lips and observing emotions and facial expressions. I loved to read and watch movies. My dream was to be an actress; I would act out dramatic scenes from plays and screenplays that I wrote.
Doctors thought that I was emotionally disturbed because I did not respond when my back was turned, only because I passed all tests that allowed me to use my eyes. I had a CAT scan and was finally diagnosed with a progressive sensorineural hearing loss at the age of four; its cause remains idiopathic. I am the only person in my family with a profound hearing loss. I told my mother that I wanted to continue speaking and to get hearing aids. She listened to my words. When I was seven, she took me to mainstream schools, deaf schools, and oral deaf schools to find the best placement for me. I got along well with people in the mainstream. I enjoyed socializing with the people in the oral deaf schools, but I wanted more from an academic setting. I refused to step into the classroom of the deaf school. I saw hands moving and the room was completely silent. To me, this was foreign, terrifying, and backwards. Should I communicate in sign simply because I was deaf?
I believe in the power of choice because I was privileged to have had a family that recognized the importance of self-determination. I recognize that my environment—which consisted of hearing people—influenced my choices, but it was my own decisions that made me who I am. I grew up oral and excelled in the mainstream. I am a highly skilled lipreader, and my English speaking, reading, and writing are well above average—even better than many hearing people I know. The support of my family has helped me to become a strong self-advocate.
I wore hearing aids from the age of four until I was eighteen, when I decided to get a cochlear implant in my left ear. I struggled in my first year of film school at Chapman University and almost dropped out in the first week. I disliked how much I had to depend on other people to listen for me while I edited, and I wanted to be an active contributor in group conversations. The decision to get a cochlear implant was a huge step for me because, all my life, I saw the cochlear implant as a permanent symbol of deafness. I resisted the label of deafness. After my implant was activated, I didn’t feel like the same person anymore. I had experienced life with four senses, but now I had to learn to live with five. Sophomore year was challenging because I was discovering the source and meaning of each foreign sound while work, school, and relationships continued around me. Self-honesty was difficult, and it was often unbearable to be alone with my thoughts. I began to resent the superficiality of cinema and felt I had no purpose in it.
I went to work as a counselor at a camp for people with various developmental and physical disabilities, not knowing what to expect. I had interacted and worked with people with disabilities in my mother’s classroom and in high school, and my younger brother, Elijah, has a developmental disability, but the camp experience was intimate, hilarious, and empowering in ways that I had never experienced. My problems had to be set aside while I worked with the campers. I heard their personal stories and saw the assistance that they needed on a daily basis. Their struggles overpowered my own problems. I quickly found purpose in this work, knowing that I needed to play a more active role as a filmmaker.
I consider deafness to be a subjective experience. No one person experiences or defines it the same as another. This is also true of disability. My empathy for people with disabilities is enhanced by my experiences as a person with a hearing loss. I identify as a person with a disability, but I would not call myself disabled because that sounds all-encompassing. I am a person with long brown hair, a bold personality, and I love to make films. These things are all part of my identity. I resist it when the labels “deaf” or “disabled” precede my gender, my occupation, my personhood.
Since I listen and speak, I consider myself to be hard of hearing when I wear the implant, but the severity of my loss does indicate that I am deaf, though I am not a member of Deaf culture. For years, I avoided American Sign Language because I had no personal use for it. Today, I see it as another language of a culture that I seek to understand. Perhaps my deafness gives me an advantage in learning the language because I am already a highly visual learner, but I’ve learned that it isn’t about American Sign Language—it’s about language. There is beauty in having the openness to communicate with others. Since I have been learning and using it in the past year, it has opened doors for me in communicating with other people who are deaf or hard of hearing.
The implant has radically helped me to not only hear sounds but to comprehend them without looking. I have experienced the sounds of music, water, human voices, and the wind, and I couldn’t imagine my life without those sounds. This is not to say that the world—and sound—can’t be experienced through touch, taste, and sight—because I have experienced them through those senses, too. Yet, we live in a society where we are defined by black and white, male and female, and hearing and deaf. In the past, I was quick to place myself in either a hearing or deaf category for the sake of making things easier—but for whom? I was making it easier for others to understand my deafness by placing myself in a more socially convenient category, at the expense of creating chaos throughout my entire being. I realized that I had to forge my own path in a gray, “in-between” space, and I found that I was not alone there.
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.
Change always begins at home. In the words of Justin Dart Jr, human rights activist: “Get into empowerment.”
Not long after this, I lost my hearing. I can’t remember when I first noticed the difference in sounds, but I already knew how to speak and was naturally curious about language and people. This curiosity intensified because of my hearing loss, and wherever my eyes focused, they were reading lips and observing emotions and facial expressions. I loved to read and watch movies. My dream was to be an actress; I would act out dramatic scenes from plays and screenplays that I wrote.
Doctors thought that I was emotionally disturbed because I did not respond when my back was turned, only because I passed all tests that allowed me to use my eyes. I had a CAT scan and was finally diagnosed with a progressive sensorineural hearing loss at the age of four; its cause remains idiopathic. I am the only person in my family with a profound hearing loss. I told my mother that I wanted to continue speaking and to get hearing aids. She listened to my words. When I was seven, she took me to mainstream schools, deaf schools, and oral deaf schools to find the best placement for me. I got along well with people in the mainstream. I enjoyed socializing with the people in the oral deaf schools, but I wanted more from an academic setting. I refused to step into the classroom of the deaf school. I saw hands moving and the room was completely silent. To me, this was foreign, terrifying, and backwards. Should I communicate in sign simply because I was deaf?
I believe in the power of choice because I was privileged to have had a family that recognized the importance of self-determination. I recognize that my environment—which consisted of hearing people—influenced my choices, but it was my own decisions that made me who I am. I grew up oral and excelled in the mainstream. I am a highly skilled lipreader, and my English speaking, reading, and writing are well above average—even better than many hearing people I know. The support of my family has helped me to become a strong self-advocate.
I wore hearing aids from the age of four until I was eighteen, when I decided to get a cochlear implant in my left ear. I struggled in my first year of film school at Chapman University and almost dropped out in the first week. I disliked how much I had to depend on other people to listen for me while I edited, and I wanted to be an active contributor in group conversations. The decision to get a cochlear implant was a huge step for me because, all my life, I saw the cochlear implant as a permanent symbol of deafness. I resisted the label of deafness. After my implant was activated, I didn’t feel like the same person anymore. I had experienced life with four senses, but now I had to learn to live with five. Sophomore year was challenging because I was discovering the source and meaning of each foreign sound while work, school, and relationships continued around me. Self-honesty was difficult, and it was often unbearable to be alone with my thoughts. I began to resent the superficiality of cinema and felt I had no purpose in it.
I went to work as a counselor at a camp for people with various developmental and physical disabilities, not knowing what to expect. I had interacted and worked with people with disabilities in my mother’s classroom and in high school, and my younger brother, Elijah, has a developmental disability, but the camp experience was intimate, hilarious, and empowering in ways that I had never experienced. My problems had to be set aside while I worked with the campers. I heard their personal stories and saw the assistance that they needed on a daily basis. Their struggles overpowered my own problems. I quickly found purpose in this work, knowing that I needed to play a more active role as a filmmaker.
I consider deafness to be a subjective experience. No one person experiences or defines it the same as another. This is also true of disability. My empathy for people with disabilities is enhanced by my experiences as a person with a hearing loss. I identify as a person with a disability, but I would not call myself disabled because that sounds all-encompassing. I am a person with long brown hair, a bold personality, and I love to make films. These things are all part of my identity. I resist it when the labels “deaf” or “disabled” precede my gender, my occupation, my personhood.
Since I listen and speak, I consider myself to be hard of hearing when I wear the implant, but the severity of my loss does indicate that I am deaf, though I am not a member of Deaf culture. For years, I avoided American Sign Language because I had no personal use for it. Today, I see it as another language of a culture that I seek to understand. Perhaps my deafness gives me an advantage in learning the language because I am already a highly visual learner, but I’ve learned that it isn’t about American Sign Language—it’s about language. There is beauty in having the openness to communicate with others. Since I have been learning and using it in the past year, it has opened doors for me in communicating with other people who are deaf or hard of hearing.
The implant has radically helped me to not only hear sounds but to comprehend them without looking. I have experienced the sounds of music, water, human voices, and the wind, and I couldn’t imagine my life without those sounds. This is not to say that the world—and sound—can’t be experienced through touch, taste, and sight—because I have experienced them through those senses, too. Yet, we live in a society where we are defined by black and white, male and female, and hearing and deaf. In the past, I was quick to place myself in either a hearing or deaf category for the sake of making things easier—but for whom? I was making it easier for others to understand my deafness by placing myself in a more socially convenient category, at the expense of creating chaos throughout my entire being. I realized that I had to forge my own path in a gray, “in-between” space, and I found that I was not alone there.
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.
Change always begins at home. In the words of Justin Dart Jr, human rights activist: “Get into empowerment.”
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