Unbound

Abstract

In the process of writing this memoir, I engaged with the following questions: How did the perceptions of family members, friends, and teachers, shape my earliest self-perceptions? 2. How did these points of view help or hinder my development? 3. What has made me want not to resign myself to my limitations? 4. Where does the stigma surrounding disability come from and why? 5. What lives, real or fictional, are in dialogue with my experience of disability and sense of self? Also, this memoir is a follow-up piece to my talk at TEDx Everett where I shared my life’s story. It was a great experience, but I was unsatisfied with the wording I used to talk about myself, and the language of disability and self-representation. Then the language of disability became a main concern to address in my memoir. I decided to go to the roots of my disability experience. I found that it was closely associated with the negative memory of being singled out as “disabled” (in second grade) when I was introduced to the book Helen Keller by Margaret Davidson. This is a moment that I describe in Part 1 of my memoir that left me with a sense that the most important thing about Keller was her disability. The only way I was going to get past my negative impression of her was to read her books and I read all of them. My disability is something I often ignored, not to be frustrated by my body’s inability to function as it should. I acknowledge that I have a disability, I use a wheelchair to move around, and I need technology to live my life as I want to. My technological devices are part of the way I move through the world. However, I consider these devices extensions of myself rather than as integral parts of my identity. My identity as a person who happens to have a disability has changed over the years. In Part 4 of my memoir, I discuss the social aspects that come with having a disability, such as people’s misconceptions of people with disabilities, discrimination, and ableism. To talk about these social issues, I explored disability theory culled from different sources, including videos like Aimee Mullins on Today Show, The Aesthetics of Prosthetics: Aimee Mullins, Changing my legs—and my mindset, The opportunity of adversity, and My 12 pairs of legs. These videos allowed me to understand the relationship that exists among the individual with a disability, the technology she/he uses to navigate in the world, and society. In this memoir I have sought to find a new language with which to talk about disability, and this search for language led me to ask questions about the meanings and connotations of words and word orders. For example, I already knew about my preference for describing myself in terms of person-first language such as “I happen to have a disability,” but I didn’t know that some individuals liked to use disability-first language like “I am a disabled person.” The different ways of self-identification showed me that the language of disability can vary from person to person. There is no fixed language for disability and disability identity. Each individual develops her or his identity and language. To further my understanding of disability-identity development, over the past year I joined a primarily online support group called Here and Now—Washington Paralysis Network. When I first joined the group, I asked the members what was the best way I could identify as a person with a disability. A member said that I should stop worrying about how to identify myself and just do it and try many ways and see what stuck. This answer lead me to understand that in the community of people with disabilities there is a spectrum of identities that one can explore and be at any one time. In my early life, for instance, I was labeled as “disabled” by other people, but now I define myself as a “person who happens to have a disability.” For now I am comfortable with this identity. In my memoir, I am telling a story about understanding myself as a person who happens to have a disability, and at the same time I am showing the reader contemporary arguments surrounding disability identity development. To do this I watched several videos about the topic that I have listed in the bibliography. Although I haven’t referenced them in my memoir directly, these videos have provided me with many perspectives about disability. By watching them, I came to understand that whatever language people with disabilities use to talk about themselves, we all aim to do the same: present ourselves on our own terms. We aim to let our voices be heard and be appreciated for who we are. I hope that I have been able to narrate my life experience as a person who happens to have a disability, as a person who faces ableism, as a person who uses technology to augment her capacity, and as a person who is finding her way in society. I am proud to say that I am one voice among many others that seek to break the silence about disability. I feel that my memoir has freed me from the fear of writing about my disability experience. Unbound is a narrative about my disability experience, and it has also given me power over my story, something I didn’t have before I wrote it.