I have one thing to say about Alice Wong’s gift to the US disability community known as the Disability Visibility Project:
“Just do it!”
My friend and sometimes travel companion Denise DeShetler and I just did. There are two main reasons why I did this interview.
The first reason is because I wanted to record publicly that Universal Design was already a concept known and promoted in Seattle in 1975 after my partner and co-founder of the University of Washington Disabled Student’s Commission returned from meeting Ron Mace in Washington DC and we began to use it as our base reference in all we did.
The second reason is because we are in the midst of a ridiculously politicized struggle for the US to ratify the United Nations charter based on the ADA – the Convention on the Rights of People with Disabilities (CRPD). I want my part of this oral history of the first 25 years ADA Era available to educate Senators, their staff, and the general public.
On to a few things I didn’t say in the 40 minute Disability Visibility Project recording.
I didn’t mention that I only pulled rehabilitation and spinal cancer because of the love of family and friends. Some like Chris, Bill, Anita and Margaret here kept my mind active and my hopes projected forward. Some, with an inspired subtlety filled my hospital room with stories full of laughter and our close calls on the ski slopes. A few simply camped out in my hospital room for hours on end infusing me with the will to live by their silent, intense vigil of soul-to-soul presence. Among those Pamela Mottola stands out for the quality of presence she created. I have been on 30-day silent retreats that failed to open doors of perception that her quiet attentiveness unlocked. Her one visit, to tell me she was engaged to be married even as I lay 17 years old and expected to die, set up a near death experience where I had the choice to continue to live.
Stories matter. They saved lives like mine.
To put it another way as Robin Williams once said:
“I used to think the worst thing in life was to end up all alone. It’s not. The worst thing in life is to end up with people that make you feel all alone.”
Tell your story in the Disability Visibility Project.
I also didn’t say mention that I have a body that seems to be hardwired to teach me one simple paradox. “Interdependence is our starting and ending point. Independence only happens by working together.”
Today I read about the heroic, but unsuccessful, efforts of passersby to try to save an Alsatian locked in a hot car while its owner was nowhere to be found. On the same page was the story of a young woman filmed, mocked and abandoned by passersby at St. Botolph’s Priory in Colchester, Essex where she lay on the ground in a seizure.
What did Robin Williams say? “The worst thing in life is to end up with people that make you feel all alone.”
Interdependence burnishes away the corrosion of indifference and the illusion of self-sufficiency from our keenest points of contact with the world. Yes, the friction with that hard reality is often painful. At those keen points lies vulnerability. That corrosion insulates us from the electrifying shock that happens when one person’s need is exposed; that unifying solidarity when one groups needs are articulated and when those needs are met.
In my 42 years of wearing out wheelchair tires training about Universal Design in a dozen foreign countries I have never found one where the ADA is not known and fairly well understood. That is true even in countries with nothing close to the strong institutional and political forces we have fought to build leading up to and living out the ADA. But in all cases, the power me of telling our story and them meeting someone who is living the lifestyle made possible by the ADA is palpable.
To tell your story register online to record your story then walk, roll or hitch a ride over to the nearest StoryCorps recording booth. If you have a disability, tell your story. If you are family, friend, coworker or ally of someone with a disability think about participating too. The StoryCorps model is based on the simple observation that telling a story in conversation can be a very moving experience for those who hear it. In this case it will become part of the archive of a generation’s experience of the past 25 years of the Americans with Disabilities Act – the ADA.
Just think of the power of my rendition of our story multiplied by yours!
Dr. Scott Rains writes daily on travel and issues in the tourism industry of interest to people with disabilities. His work appears online at www.RollingRains.com and http://withtv.typepad.com/weblog/travel/ . Rains’ articles have also appeared in New Mobility, Emerging Horizons, Contours, Accessible Portugal, Audacity, Travel and Transitions, eTur Brazil, Turismo Polibea, [with]TV, and Disaboom among others. For his research on the topic of Universal Design and the travel and hospitality industry he was appointed as Resident Scholar at the Center for Cultural Studies of the University of California Santa Cruz (2004-05).
He is active as a consultant and speaker.