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‘More Than a Chick in a Chair’

By Denise DiNoto

Editor’s note: This year, the Independent Living Center of the Hudson Valley received a grant from the New York State Council on the Arts, through the Arts Center of the Capital Region, to sponsor a photojournalism course that enabled people with disabilities to write about and photograph aspects of their disability experiences. ILCHV hired Lee Anne Morgan, a nationally known photojournalist, who guided the class in its writing and picture-taking. The class was part of ILCHV’s commitment to Pat’s Place, a program named after the late disability advocate and artist Pat Figueroa, who believed that participation in the arts was a method to empowerment for people with disabilities.

The class included eight individuals with all types of disabilities. The youngest was 18, the oldest mid-60s, both male and female. The class provided an opportunity to share experiences and support each other’s creative struggles. The result is a catalogue of essays and pictures by artists with disabilities speaking to their own experiences.

Independence Today will periodically publish one of the eight essays from this project. Below is the next in the series.

My disability and wheelchair are the least important components of what makes me who I am as a person. I am a daughter, a sister, a friend, a professional, a volunteer, a Rotarian, an advocate, a musician, and a writer. I complete all of my daily activities using my wheelchair, but I am not a disabled woman.

photo of empty parking space with handicapel logo 'Access' /Denise DiNotoThe very definition of “disabled” is: Incapacitated. Unable to work. There is nothing about my womanhood or person hood that does not work. I am employed and work forty hours a week in addition to the forty hours I spend supervising the personal assistants who work for me. Disabled? Please. I know people who don’t live with mobility impairments who work less than I do. Are they considered disabled?

I struggle when asked to write about my disability and its impact on my life, because my disability is very visible and it is impossible to hide the wheelchair I use for my daily mobility. The wheelchair is often the first feature that strangers notice, the vehicle they use to start a conversation.

I become defensive when I meet someone for the first time and they say, “You’re pretty good with that.” I want to answer, “Yes – and you walk pretty well, but I don’t feel the need to compliment you on that ability.” My other favorite is “Slow down! You’ll get a speeding ticket.” That is not even a tiny bit funny. You have to catch me first. Good luck with that, because even if you walk well, you won’t be able to keep up with my chair at seven miles per hour.

Everyone who lives with a chronic mobility impairment or disability gets frustrated. If they say otherwise, they are lying. I have my moments of frustration and anger.

When I can’t join friends because the restaurant is not wheelchair accessible, I get angry. When I show up to educate a Congressman about disability issues and his district office is not wheelchair accessible, I feel unwelcome. When my personal assistant calls in sick fifteen minutes before her shift and I have to scramble to find others who might be able to help me shower, use a toilet or get out of bed, I feel resentful because I depend on the strength of others when my own muscles have betrayed me.

Posted no trespassing sign oin tree in overgrown forest  'Posted'/Denise DiNoto I’d rather not live in that anger and bitterness. I choose to find the positive and remain optimistic. Some days that choice is not easy. However, I know that no matter how bad my situation appears at any moment, things could always be worse. I remind myself that my track record for surviving difficult times is one hundred percent, which is pretty good. I focus on the issue at hand, trying not to get caught up in the worries that will come tomorrow.

Would life be easier if I did not have to live with my disability? Perhaps. My life has been blessed with opportunities, and many are the direct result of my disability. If I were able-bodied, who’s to say if those same chances would have come my way? Would I take a stand against oppression if I had not encountered prejudice? Would I fight for access if I had never experienced architectural and attitudinal barriers? I would like to say I would … but I do not know for sure

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