Disability Visibility Project: Scott Rains & Denise DeShetler

Scott Rains and Denise DeShetler recorded their story at StoryCorps San Francisco on August 9, 2014. Below are a few excerpts from their conversation. Thank you for sharing your story, Scott and Denise!!

On parallels between civil rights, anti-war movement and disability rights movement:

Scott: I was a part of making Washington State accessible, making Seattle the first place that had an accessible bus system in the world. And like I said setting up the Disabled Students Commission at the University of Washington put me in touch with some amazing people. And I think, something that really confirmed this direction in my life from here, or gave it shape, besides just the general interest that I always had in, in civil rights, was somebody that we brought to the University. And I don’t think it was a disabled students commission, but he came to visit us. And, he was a black man. He was involved in civil rights. Knew Doctor King. But I’ve forgotten his name…And when I asked him for, sort of, insider tips and organizing and you know what to do in our movement. His first question was, well, what does your community want? And, it’s basic organizing 101. You ask your community what they want, but, when he said it, when he emphasised the word community.

It resonated with everything about the beloved community, everything that Dr. King was talking about at the time. And I realized that this transformation that I was going through, this physical and psychological transformation that I was going through, from, from being a really active guy to being somebody, you know, who, half my body wasn’t, wasn’t doing what I wanted it to. My call was, was to a community. And for a community. And so that’s when I was confirmed. But it gave me, a real different perspective too…

I did the rehabilitation that was suppose to do physically and all that sort of a thing. But I wasn’t doing it, for me except, just the basic maintenance stuff. I was really looking for rehabilitation answers, or architectural answers, or community answers. And so that launched me really into the international stuff that where you know me traveling around the world. I wanted to take what I knew and, and bring it to other places.

On universal design:

Scott: And the universal design says…imagine us in, imagine us in from the beginning, think of us as customers, think of us as students, think of us as parents, and design, look at what our bodies need, how our bodies move, how tall we are, how strong our grip is, how good our hearing is. And make adjustments…there’s some amazing stuff going on. I just came across reference to deaf blind design, and there’s a blind architect here in the San Francisco Bay Area who’s doing some amazing stuff. Both in the way you plan, and the way you design projects. Deafspace is is coming out of Gallaudet …there’s been design changes in dormitories there. Aisles are wider, hallways are wider, why? Because deaf people need to be looking at each other, so they need to be walking side by side. Things, things like that that I never thought about in a wheelchair…and so I end up focusing a lot on you know wheelchair ramps and elevators and that sort of a thing. But it really means much more than just someone in a wheelchair or even somebody with you know what we call a disability.

…one of the good things now is that the definition of disability has really changed. We, we talk about disability as an interaction between environment and body. So that, you can really, do away with disability. To architecture, or even attitude.
And that sounds absurd because a building can’t make me walk, but a building can make it, if it’s done right, so that it doesn’t matter that I can’t walk. I can still do what I need to do and. Equally as important, what everybody else gets to do in that building.

And that’s, that’s where we say, you know, disability is this, is this interaction between, between function, what, what the function that your body can do and the build environment around you. Because every time you build something, every time you change the, natural environment, you’re doing it, according to some value, according to some goal and, those goals can either, exclude or include, other people. Universal design we’re trying to say, you include the broadest number of people, the broadest range and type of people that you can.

…if Universal Design means something. It means that we can change our economic system and our, and our built environment and our attitudes toward you know, what can be productive work and what can be accommodated work space. I think that with, inclusive tourism which is, which is my word for applying universal design to, to tourism. I think that we’re gonna continue to spread these attitudes…Seeing more people with disabilities out there, doing the things that they would like to do, doing the things that they thought were you know, they were restricted from doing. I think it’s gonna, it’s gonna make actually some waves. Some, some revolutionary changes and expectations. In, developing countries as, as well as already developed countries.

On changing notions of bodies and inclusion:

Denise:  I think that if I leave behind a sense of, the world… that the world can be built around bodies as they are and not idealized bodies and, human bodies as they change over time. That idea of, acceptance and inclusion. There’s… one bit in my personal biography, that, i’d like to, see, turned concrete. Or at least to see something concrete happen out of that. When I was, in high school I got to go to, Brasil. When I was, in college I got to go back again and I got [a] scholarship to study at Brazil’s finest university, the University of Sao Paolo. Aah, well, it didn’t turn out. I got down there, and they weren’t interested at all in, accommodating me changing classroom or anything like that. So, I had to come back. But, I would like to see it so that students with disabilities can travel around the world when they’re young, get this cross-cultural experience…

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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.

 

Denise DeShetler is a Certified Massage Therapist and an Accessibility Wellness Consultant. She has gained over 10 years experience working with people with disabilities in the US and Europe as a Therapeutic Recreation Specialist, a Sea Kayak Guide for E.T.C., a Special Olympics Coach and a Provider of Accessible International Travel Programs.

Denise is currently running a private massage practice for disabled & able bodies and helping Wellness/Travel professionals become more inclusive in their communities. www.denisedeshetler.com