Below are some excerpts of an interview with Victor Pineda and Alice Wong for the Disability Visibility Project. Their interview was recorded at StoryCorps San Francisco on December 17, 2014.
These excerpts have been edited for space.
On disabling built environments
Alice: You have a Ph.D. in Public Affairs at UCLA and are an adjunct professor in the department of City and Regional Planning at UC Berkeley, so, you know, obviously you’ve studied a lot on disability studies and urban planning. How do you think built environments disable people, because I think sometimes people think – there’s a general perception that disability is at the individual level where it resides in the body, and as many people with disabilities understand, it’s fully an interactional process with institutions, policies, attitudes and the physical environment. So tell me about what you’ve learned in terms of how built environments can actually make a disabled person more disabled than they have to be?
Victor: So… I’m sitting here in front of you with a machine plugged in to my face. It’s a breathing machine that’s giving me deep amounts of room air. I’m sitting in a $65,000 wheelchair, custom designed to fit my 95-pound body, which is very, very thin because of a neuromuscular condition. So disability for me is very much about how this body operates in a particular space. So it’s not so much the fact that I have a small frame, that my muscles are weak, that, you know, I have to have the breathing machine batteries charged… Those aren’t the things that disable me. Those are just characteristics of my time and my place here, you know, in this city and this earth. What’s really disabling to me are the ways in which the cities that we build have a conception of what is the standard body, what is the standard levels of function. And in doing so, I become, like you, kind of an unstandardized citizen. We’re, in a sense, unique, and those unique qualities, that I view and have come to see as assets, as really innovative ways to see and think about the world – mainly having an impairment, having several impairments, belonging to the disability community – aren’t really seen, or have not historically been seen – as valued ways of being. So these cities have’t really been built for people like me.
On moving to the United States as a young child and experiences in school
Victor: I think that whatever you encounter something that is unknown, there is always curiosity. The curiosity however, can also lead to fear and to social exclusion. So I think that that exclusion can either be imposed by other people’s fear – I mean, I remember the 4th or the 5th grade, there was a rumor that came about: “if you hang out with Victor, you’ll catch what he has…”
Alice: Oh really? Wow…
Victor: “and you’ll also end up like him.” So, you have, from those early experiences of being sort of, you know, I really felt like I was this foreigner, I did not speak English, they pulled me out to ESL courses – English as a Second Language courses – I thought that that was kind of cool that someone was kind of dedicated to helping me out. Also, in getting assimilated. But, as you grow, you experience all kinds of things, like all other kids do, which is, puberty and then dating, and then, you know, will I go to prom? Should I ask somebody to go to prom? You know, I can’t walk, how am I going to dance? How am I going to show..you know, am I just going to be a laughing stock? So, a lot of these things come out of 2 levels. One is the social fear of people around you, and the other is sort of, your own internal kind of anxieties. Your internal sense of stigma, or you feel, like, you’re not like everybody else. But, I think that, in my case, I had a very strong family that was really, sort of.. my mother really wanted to support, push me towards being independent, and my grandmother was very supportive in terms of making sure I was protected.
Alice: You had the best of both worlds?
Victor: Yeah, the best of both worlds! And I think that the fact that I had two brothers, and they weren’t always with me either, cause my parents got divorced, so my brothers sometimes lived outside the U.S. with my father. So, I had different experiences that I had to adjust to. But in terms of making friends, I think really it’s about 2 people, and what they give and take from each other, what they share, and, there were a few friends, you know, during my years growing up, that were also shy and that were also eating their lunches in the library, because they nor I felt like the playground was the place for us, where we felt really protected or included, in a sense in high school.
Alice: Yeah, I mean, talk about physical environments that are disabling. You know, when I was young, in the 80’s, the playground often was full of gravel pits and, where all the swing sets were and the merry-go-rounds. And, I would always be on the asphalt watching, because my wheels would get stuck if I got in there, so, I was always watching, never participating, and, that to me is a clear example of how, especially young kids who really should have the right to play, how they’re really segregated from their non-disabled peers. And, yeah, to me, that was another experience too where somebody knocked me down during playground. I mean, I always thought recess was a really scary time…
Alice: Because, kids are running…
Vision of an inclusive city/community
Victor: And, I think, what you’re really getting to is the fact that the word ‘inclusive,’ and to get back to how we started this conversation, which is basically, “What is an inclusive city?” “What does an inclusive city look like?” which, quite frankly, is the basis of my philanthropic or educational work, or my research, is really sort of, “What are the keys to an inclusive city?” “How do we unlock the ramp to the inclusive city?”
Alice: Yeah, what would you say are the main features of an ideal city that welcomes all types of bodies, all types of functioning, all types of disabilities?
Victor: I think it’s based on 3 key principles. One is, basically, equal access and equal opportunity. So you think about different things that cities have: libraries, schools, transportation systems, jobs and really putting into place kind of, the infrastructure and laws that protect people to equally access parts of the city and the benefits of the city. Two I think really gives kind of engaged, thriving communities that interact, because I think that’s where I think you’re really able to have social consciousness. It’s not only about teaching people or having awareness campaigns, but it’s really about people connecting and having their own cultures kind of intermingling. So, we have kind of, a lot of those experiences here in San Francisco, right, where you’ve got the Chinese communities and the Hispanic communities, and LGBT, and immigrant communities and tech communities, and people with disabilities are involved in all of those. So, I think an inclusive city has those kinds of thriving communities that interact. And the third, which I think is the most important, which is really an opportunity for constantly revisiting your history so that you have a real sense of where you come from. Whether it’s you as a person with a disability, whether it’s you as an immigrant, whether it’s you as an LGBT, because the city, the inclusive city can have ramps, it can have all these things, and it can have these communities that work together, but I think that the histories give more of a grounding to the continuity of your journey, and so, it makes the city and policies of these cities, future plans of these cities, correct past injustices.
Alice: Yeah, and I think part of that is making sure that, not only historians are the ones who tell the story and create the narrative, but that we ourselves create our own narratives and to bring light to these stories and we can’t wait for a historian to write about our story, but, through oral histories, through the Disability Visibility Project, and I think you know, talking to people like you, Victor, it’s really about building a base and giving that base to the future.
Victor Santiago Pineda, PhD is an Adjunct Professor in the Department of City and Regional Planning at the University of California at Berkeley, a Lecturer in the Comparative Disability Policy Program at American University’s School for International Service, and a Research Fellow at the World Institute on Disability. He has worked closely with the U.S. Department of the Treasury, World Bank, United Nations, UNESCO, UNICEF, and National Advisory Committees in developing programs and policies that include youth with disabilities as equal stakeholders in development. Victor was the recipient of a National Science Foundation (NSF) innovative research grant, a Fulbright-Hays Fellowship, the Thomas Jefferson Award, the Tom Clausen Fellowship for Business and Policy, and the AAPD Paul G. Hearne Leadership Award. Victor Santiago Pineda holds a Ph.D. from the Luskin School for Public Affairs at the University of California at Los Angeles and a Master’s in City and Regional Planning, a BA in Political Economy, and a BS in Business Administration from the University of California at Berkeley.