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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19 December 2011

Pretending to be normal: A photo story of Asperger's Syndrome

Hey folks! I thought you might want to read a piece I wrote for Street Roots (see below), a publication that creates income opportunities for people experiencing homelessness and poverty by producing a newspaper and other media that are catalysts for individual and social change. 

Leah Nash, an award-winning documentary, editorial, and portrait photographer followed me around for a year taking photos and documenting certain events in my life. To go directly to the video and narrative, click here.

If you exhaust yourself to hide your challenges, you are often penalized for not showing evidence of your struggles. And if you possess no ability to hide from your challenges, you are often pitied or shamed. Damned if you do and damned if you don’t.

When someone says to me, “You don’t seem deaf or autistic,” my response is, “You might want to expand your perception of individuals who are deaf and autistic.”

Disabled people are as unique and varied as the rest of our world’s population. And it is everyone’s duty to stop limiting us by enabling and promoting archaic typecasts. Disabled people vary in personality just as much as non-disabled people. In a nutshell, there is no one way for a disabled person to be. And what all people have in common, regardless of whether or not disability is present, is the need for support and understanding. Every person on this planet will experience challenges in one form or another.

It is human nature to approach situations and to make assumptions and judgments based only on our previous experiences. Our brains are hard wired to explore and interpret the world in this way. But it is our collective responsibility to understand and address the limitations we unconsciously bring into our interactions with others—and especially so with others who are different. When any given person leaves the confines of his or her home, they will often interact with people who are not at all what their minds might perceive.

Some disabilities are invisible and are not immediately apparent. In the case of autism, it is a spectrum. While some people on the autism spectrum have noticeable profound support needs, others have light support needs. And yet there are also autistic individuals who seem like they don’t need much but actually, behind the scenes (e.g. in their homes, at work, and elsewhere), they might be getting a lot of support — it just isn’t observed in a context where it shows. Note that it’s important where you catch an autistic person in life. One month or year, or whatever have you, a person on the spectrum who previously had light support needs might all of a sudden require more support to meet the demands of life. This can be brought on by changes such as relocating or starting a new job, etc. Once a “script” is in place to address that change and all the dust settles, then that person’s needs might return to accustomed levels.

One of the most important things to understand about autism is that autistic individuals have uneven skills. For example, a person on the spectrum might be a genius at math, yet have difficulty preparing a simple sandwich. In my case, my math skills are light years behind my skills as an artist. I have the same issue with language, as my spoken expression (especially if I am expected to address an unanticipated question) is not in the same league as my written expression. This is the case for a notable percentage of autistic individuals.

In addition to being autistic, I have a profound hearing loss. I was born with a mild progressive hearing loss and lost a significant amount of hearing after a severe case of chicken pox in my teens. Becoming deaf is not something I mourn. It has actually been a blessing in disguise as I am very sensitive to and often bothered by noise. Via my cochlear implant and hearing aid, I can choose when I do and do not want to hear. I am also fluent in American Sign Language (ASL). A person might say to me, “But you speak and hear just fine.” In quiet settings, I can comprehend a lot of spoken language in close proximity, but as soon as too much background noise interferes, I am no longer aided by my cochlear implant or hearing aid. I am deaf and always will be deaf regardless of any future advances in technology. And that is okay.

Perhaps you might be wondering why I have used identity-first language more than person-first language (e.g. autistic verses person with autism). The idea behind person-first language is to support recognition that someone is a person first and that the disability is secondary. I support this approach for those who have made a personal choice to use it. In my case, I feel that deafness and autism are too much a part of me to warrant secondary status. Of course I am a human being first. But there is no part of me that is lost and needs to be mourned or recovered. I am who I am: a deaf autistic individual who is passionate about art, disability rights, and self-advocacy. And I will let nothing stop me as I explore, learn, and grow. When disabled individuals are truly included, the concept of disability and its supposed limits change.

Lots of mothers have warned their children not to judge books by their covers. I know, that same old tired cliché. But it’s true. Not all disabled people are in a constant state of grief and pity. Matter of fact, fear mongering and shame are the very things that serve to hold disabled people back from what we truly need: acceptance, accommodation, accessibility, and integration in the here and now. We are just as shaped by community, education, opportunity, parenting style, and overall approach to our support needs as is the case with any other member of society.

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