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A Book by Its Cover – Updated 11-25-18

Update November 25 2018

It’s been over three years since I wrote this article. Since that time I have had the privilege and experience working with other disabled individuals, primarily those who are deaf. Antoine Hunter, a deaf dancer who I photographed for the magazine “The Pool and Joshua Castille a deaf actor who appeared in Hunchback for 5th Avenue Theatre are both remarkable in their abilities as artists. My work with both Christine and Sarah along with those who I’ve come to know since then has forever changed my life. Just like ‘White Privilege” it’s tough for anyone non white to understand the meaning of that phrase. So often when I bring it up (if at all) to whites, they immediately go on the defensive, as if they’ve done something wrong. No in 95% of the time that’s not the case. Privilege of any type often goes without any conscious thought. It just ‘is.’ In the very same way ‘able body privilege’ exists for which I have been guilty, but without meaning to be guilty. Not experiencing first hand being disabled doesn’t allow one to truly KNOW the feelings/experiences/hardships of what was once just a right.

My partner recently sent me a New York Times article that hits very close to home, Revelations in a Wheelchair by Nolan Ryan Trowe. It is especially poignant because he is a photographer. He became disabled due to a cliff diving spinal injury and decided to use his photographic skills to document how able body privilege works.

This month the Camp Fire near Oroville, CA recorded the largest wildfire in California history. A 62 year old woman who was wheelchair bound due to a stroke managed to escape despite her disability. This is especially poignant to me since after caring for my mother for three years before her death, I suffered a stroke 22 days after her passing. I am forever grateful that my stroke has not left me with any visible disability. 

I know that many people visit my site to learn about my experiences with ‘gear.’ But the most important part of my life isn’t gear. It’s the people I meet and befriend. I hope you find that in your life as well.

Original Article June 29 2015

Three years ago I was inspired to be uncomfortable when I met and worked with Adrian Blue, a deaf actor/director. He immediately struck me as an individual I wanted to know, and even though he would read lips I was motivated to learn ASL, at least enough to sign a few sentences. I’ve always been crappy at languages, but I noticed I had more of an aptitude at ASL than I did in learning French!

Do you think you know me?

Do you think you know me?

It was during my interaction with Adrian that I realized I knew NOTHING about people with disabilities. Growing up I had one family friend who had been born with Down’s Syndrome. I was not very popular in school simply because I was the only Japanese American, but each and every time Karen came to visit, she would run up to me yelling MARK! and gave me the largest hug I’d ever received. I noticed my father was very uncomfortable around her which bothered me quite a bit. He own discomfort arose from not knowing what to do/say to her. It was while watching his reaction that I realized growth can come from placing myself in ‘uncomfortable’ situations so I could grow as a human.

So for the past two years I have embarked on a personal journey to learn more about those with disabilities, to educate myself about something I know very little about. I originally started with a young girl and have now worked with two young women who from birth have used a wheelchair. My voice is to use photography in describing how I see my world and those who interact within my life. How despite each person’s handicap we are in the end more than our disabilities. And each of us has one or more. Some are visible, some are not. How we deal with our own disabilities determines how we will live our lives. How we view our brothers and sisters will determine how we view our world.

At the end of this project, at least the photographic part I will amass all of the lessons I have experienced at the grace of those who have allowed me to share a part of their lives with me. But for now I will simply say that we are all the same, we are all human souls who all want the very same things; love, respect and community.

 

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