~Rumi

All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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01 June 2010

World Autism Interviews: Me


Two grad students from Ohio State University (who are Aspitude fans--yay!) asked if they could interview me for their literacy narrative project. I'm always up for an easy blog post, so I've decided to share my answers. 

Students: What does "disability" mean to you?

Elesia: The Americans with Disabilities Act has a basic definition of disability: an impairment that substantially limits one or more major life activities, a record of such an impairment, or being regarded as having such an impairment.

There are medical and social models of disability, which may be generalized as one being cure-focused and the other being inclusion-focused.

A lot can be said about the term disability. It is a word that conducts current.

Some people view disability as a negative while others view it as a positive. Disability has been defined many ways: as a way of life, as a burden, or as a gift. In my book, disability has the power to unite communities seeking equality, inclusion, and respect.

There is the neurodiversity movement, which promotes social acceptance of neurological difference as a part of the broad panorama of human diversity. It seeks to bring about a world in which people with disabilities can enjoy the same access, opportunities, and rights as all other citizens. Acceptance of variety is essential to benefiting from and understanding the contributions of everyone in our society.
In a nutshell, disability defines a particular minority group that I'm a part of. Disability is me.

When I think about disability, activist Norman Kunc's words run through my mind. As a keynote speaker at a conference, he said no matter how far technology advances, disability will always be here because it is a normal part of human diversity. Way to go Norman!

Students: What does disability studies mean to you? How would you define it, in your own words?

Elesia: I think of it as an interdisciplinary field that explores disability through numerous mediums. Disability studies should be introduced in preschool and it should continue throughout formal schooling years and beyond.

Students: How do you think your life has been affected by disability studies? Is it more negative or positive, if at all?

Elesia: There is a greater awareness about disability in comparison to when I was born, but I still run into insensitive people.

Students: What does literacy mean to you? How would you define what being "literate" means? Illiterate?

Elesia: The term literacy may be looked up in a dictionary. Assuming you're wanting a bit more than that, I shall move on to the importance of Augmentative and Alternative Communication (AAC), which consists of strategies that assist people with specific communication challenges
to participate more fully in any aspect of life (e.g. education, employment, community activities, care management, volunteerism). The general goal of AAC is to achieve the most effective communication possible for the individual.

To reach maximum literacy potential, a key factor involves the medium through which literacy is obtained. Barriers must be either accommodated or removed.

As for people with disabilities, illiteracy is often an unforgivable result of compromised access to ideal communication.

Students: How has your disability related to your definition of literacy?

Elesia: Empowerment and self-advocacy (especially in regards to gaining access to ideal communication) are important steps toward removing barriers to literacy.

As for my life experience, literacy comes and goes. Sometimes I am very coherent and able to understand whatever is thrown at me. Sometimes I am not. My ability to understand is like a light switch that gets turned on and off. This is a profound realization I have come to in regards to myself, and it is as fascinating as it is frustrating. If a work obligation comes to me when I am in one of my fogs, I will not understand, and that leads me to procrastinate. But when the fog lifts, all is clear and I feel invincible.

Students: What role does blogging play in your life? How does it relate to your disability?

Elesia: I enjoy blogging, as it is a way for me to air my ideas and opinions and receive feedback. Being both Autistic and Deaf, I may have unique experiences or perspectives others may wish to learn or read about. We spoke of disability studies above: my blog is a small speck of color that helps to make up the great collage of disability.

Students: Do you feel like blogging has enabled you to better express your feelings about disability? Inform others?

Elesia: Yes. The best part about blogging is that I can organize my disjointed garbled thoughts in one sitting. In a back and forth conversation, doing so would take me much longer. I enjoy reading a multitude of blogs within the disability community, as I learn so much and come away with new ways to explore how society relates to us. I want to know what people with disabilities think is important for others to know. We blog about things that hit us deeply. For readers, it's a voyeuristic look into our personal worlds.

Students: What do you think blogging has done for disability studies, the disability community?

Elesia: Given a forum, people with disabilities may express, firsthand, what's really on our minds. This reminds me of Community Based Participatory Research, which is an interdisciplinary research methodology in which scientific professionals and members of a specific community work together as equal partners in the development, implementation, and dissemination of research that is relevant to the community.


Recommended books on disability/disability rights:

Claiming Disability: Knowledge and Identity, by Simi Linton

Disability Theory, by Tobin Siebers

No Pity: People with Disabilities Forging a New Civil Rights Movement, by Joseph P. Shapiro

Nothing About Us Without Us: Disability Oppression and Empowerment, by James I. Charlton

5 comments:

  1. Hooray!! Somebody needed to interview you, after you have interviewed quite a few people. Perhaps I should start interviewing as well ;)

    Are the students Aspies too, or just people interested in disability studies?

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  2. Hi, Catatab_Tabimount! The students who interviewed me are not on the spectrum, but their disability studies teacher is. Glad you stopped by! :)

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  3. Wow, I go through this all the time: "Sometimes I am very coherent and able to understand whatever is thrown at me. Sometimes I am not. My ability to understand is like a light switch that gets turned on and off. This is a profound realization I have come to in regards to myself, and it is as fascinating as it is frustrating. If a work obligation comes to me when I am in one of my fogs, I will not understand, and that leads me to procrastinate. But when the fog lifts, all is clear and I feel invincible."

    I have a hard time figuring out what makes the light switch go on and off. Maybe i never will.

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  4. Lol, Isabel. I wish we never had foggy days, but at least I know I am not alone. All my best!

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