[theme music starts]
Tim Lynch: [00:00:00] This is K-A-L-X Berkeley
Today on Berkeley Brainwaves, we talk to Dr. Victor Santiago Pineda. Dr. Pineda is the executive director of the Center for Independent Living. He’s the director of the UC Berkeley Inclusive Cities Lab. He’s been a lecturer in city and regional planning, a scholar and fellow in the Haas School of Business and the UC Berkeley Othering and Belonging Institute.
He is the author of Building the Inclusive City: Governance, Access, and the Urban Transformation of Dubai and Inclusion and Belonging in the Cities of Tomorrow: Governance and Access by Design. He is also the co-author of a book coming out soon about inclusion and sensory environments. [theme music ends]
This is Berkeley [00:01:00] Brainwaves. My name is Tim Lynch. Our guest today in the studio is Victor Pineda. Victor is the executive director of the Center for Independent Living here in Berkeley. Victor, welcome to KALX.
Victor Pineda: Thank you so much, Tim. It’s so great to be back on campus with you.
Tim Lynch: Right on. Well, we’re glad to have you. Let’s start with the Center for Independent Living. What is it? What do they, what do they do? What do you all do? What services do you offer?
Victor Pineda: Look, this is one of the most profound hotbeds for innovation and change and social transformation. The independent living movement Is very much a Berkeley and a UC Berkeley spawned, uh, philosophy and radical, you know, s- social, political, economic revolution, right?
And it’s not something that lives in [00:02:00] the past. It is an evolving reality. It is one of the few social movements built around a profound shift in worldview. And that is that disability is not primarily a deficit of an individual, but a mismatch between people and the environment systems and attitudes around them.
Now, it’s important to realize that the world was very, very different. When I was born in Venezuela, I was, like so many folks with disabilities, really not seen as being able to fit in, not being able to get education. I was denied an education, and it wasn’t until I came to the US where folks that [00:03:00] fought for civil rights and fought for political change created this model.
That model directly was birthed from the Center for Independent Living right here in Berkeley.
Tim Lynch: So the Center for Independent Living, if I understand correctly, comes out of the activism especially of Ed Roberts and his contemporaries. Tell us about Ed Roberts and how that led to the Center for Independent Living.
Victor Pineda: Well, it’s Ed Roberts and a lot of other folks. There was a group of students here in the ’60s and early ’70s that, uh, lived in what was the university hospital called Cowell Hospital, right where the Haas School of Business is now. And the idea was that they would be provided medical care while attending class.
Now, they called themselves the Rolling Quads because [00:04:00] they weren’t very good patients. They weren’t very patient about social change. They invented a model of making decisions about their own lives and having the tools and the resources to live lives like everyone else. They didn’t wanna be told what time to go to bed, what time to wake up, what they could and couldn’t eat, so they would, you know, sneak out and smoke pot and have parties and, and go on, you know, dates and create a new model of what disability could be.
In a very similar way that civil rights movements, gender studies, you know, ethnic studies, so many ways that Berkeley started to challenge dominant notions of who belonged, who was different, what deviance meant. How society [00:05:00] punished deviance or devalued people that seemed inferior. They just completely rewrote the script, and they did so to the point where all these students that kind of created innovative accommodations for their disabilities on campus took those ideas, like wheelchair repair, attendant services, peer-to-peer counseling, you know, housing services.
How do you find affordable housing? And they said, “We need this off campus. We need this in the community.” So on Telegraph Avenue, Center for Independent Living was founded in 1972 With a small grant and a lot of chutzpah, and they started revolutionizing what community-based services could look like outside of an institutional setting.[00:06:00]
Tim Lynch: The chutzpah, I think, is one of the things that strikes me about these early activists. There were no– Telegraph Avenue was not an accessible street. There were no curb cuts, so they took it upon themselves to get some friends with sledgehammers and concrete and make curb cuts.
Victor Pineda: Yeah, the ramp heard around the world.
There was a story where in the middle of the night, with a bag of asphalt and some sledgehammers, the entrance to the campus on Telegraph and Bancroft, it was like a, you know, Chinese wall. It was a one step, but for somebody in a wheelchair, or for Ed Roberts who lived in an iron lung, it was just a constant, uh, barrier to their education, to their social wellbeing, to the connectedness of them to their community.
So one of the most, you know, central ideas of the Center for Independent Living [00:07:00] really resonates with Berkeley, which is, what does it mean to have dignity? What does it mean to have, you know, rights and responsibilities to each other? What is the social fabric that allows us to, uh Live the life that we value, not the life that some doctor or some medical professional has prescribed to you.
Look, I think this is really well, uh, understood with a quote. And here’s a quote from Ed Roberts. She said, “My life is an endless struggle full of frustrations and successes because I was never able to do anything in a normal way.” So the idea of normality was very constraining. [00:08:00] So the idea of difference and diversity and doing things in your own way, it wasn’t about having special needs.
It was about having all the same needs as everybody else. You know, go to school, get a job, form a family, go to a restaurant, go to the movie theater, whatever, hang out with friends. But perhaps you would do it in a slightly different way. Just need those barriers removed. Yeah. Yeah. So that was 1972. They started on Telegraph Avenue.
Tim Lynch: The center’s going strong now under your leadership. What does the Center for Independent Leadership, uh, Independent Living, excuse me, offer today?
Victor Pineda: We have a range of programs that really are the first or the last line of defense against somebody with a disability either going into a nursing home [00:09:00] or being homeless.
So if you have a challenge, you don’t have to feel hopeless. We are here to help you apply for benefits, home care services, help you find attendants, help you identify how to navigate public transportation. We have transportation vouchers. We have peer mentors. We’ll help you develop skills to have job readiness.
We will help you identify, you know, ways of connecting to other resources in the community. So we have information and referral services. But most importantly, we have a, a place that you should consider as your second home, which is right above the Ashby BART station, is the Ed Roberts Campus, the world’s [00:10:00] first most radically inclusive building that brought together all of these disability rights organizations and to create really a hub. And it’s really exciting that that hub, fifty-four years after this founding of this, you know- Incredibly, valuable and resourceful community hub, right?
Center for Independent Living. And we’re still going strong. So we have a big party that you’re all invited to on July 11th, all day. It’s a disability pride and queer pride event to really show that there is joy, and [00:11:00] there is a celebration. It’s not just struggle and hardship and, and, and feeling like the world is too difficult to navigate.
It’s that the world might be difficult to navigate, but we can navigate that world together.
Tim Lynch: It’s interesting you mention that it’s disability and queer pride together. There’s probably nothing more intersectional than disability.
Victor Pineda: Well, it touches all forms of life. Like, disability is a category of living that anybody can fall into. Like, it would take some work for me to have the experience of being a woman, and it would be very difficult for me to have an experience of being another race or having a different ethnic understanding of the world. But in a, in, in a matter of seconds [00:12:00] you could acquire a disability. We are an equal opportunity category of the human experience, and we are part of every community.
Tim Lynch: It’s the only… I’ve heard it said it’s the only minority you can join.
Victor Pineda: Yeah, and we welcome everybody.
Tim Lynch: You are also a, a bene- you’ve benefited from the work that Ed Roberts and Judy Heumann, for another very famous activist- Yeah … have done, uh, in this, and you, ’cause you wound up at UC Berkeley as an undergrad, and then you did your master’s degree. Tell us about how your experience here at Cal benefited from the work that they had done.
Victor Pineda: Well, I remember, the summer before my senior year at high school. This was 1996. I, uh, yeah, 30 years ago, in a previous millennium. I was, uh, [00:13:00] fortunate to be part of something called the Youth Leadership Program for students with disabilities.
And I encountered some really fabulous activists, and I realized that there was a center of gravity, this kind of like, this kind of like, uh- Pulled to Berkeley because, uh, Paul Longmore, a disability historian spoke, and I thought, “Wow, this guy speaks so articulately, so clearly. I wish someday I could speak like that.”
And, you know, he and I exchanged some, some information. I was– They said, “You know, really go to Berkeley. Go to Berkeley where they need you.” So I showed up, and I remember Berkeley made me feel like a real… Where I could contribute my talents without having [00:14:00] to prove that I belong. And there was a wonderful program at the time called the Disabled Students Residence Program.
Now, that was a place where in the dorms, in Unit 1 Cheney Hall, disabled folks could get attendant services in the dorm rooms, right? So no longer, you know, shunted off, segregated into Cowell Hospital. Correct. And so that was a huge innovation to build and support services within the dorms. And due to some administrative and financial challenges, that program, uh, closed around ten years ago.
But there’s efforts on campus to bring that program back. And with the new Heumann House that’s coming online, and the new kind of energy around disability studies, and obviously with the community resources [00:15:00] from the Independent Living Center, you know, my experience as an undergraduate was very much something that I felt I benefited from the richness of this campus, and something that I felt I had a responsibility to.
So now, you know, I look at the last twenty-eight years, you know, nearly twenty-nine years connected to this campus, and I see the great need to not only reclaim our radical roots, but to shape the future. And so I wanna ask the listeners to think about what is your role in reclaiming the [00:16:00] values that you care about, and fighting for those values, and continuing to bring them t- to life?
Because let’s be real, the world is scary and volatile, and we feel that many of our values are being eroded. But it’s how we come together to support each other around the values that we care about that will shape the future.
Tim Lynch: If you’re just joining us, you’re listening to Berkeley Brainwaves on KALX, K-A-L-X Berkeley. Our guest today is Victor Pineda. Victor is the executive director of the Center for Independent Living here in Berkeley. He’s also a faculty member teaching at UC Berkeley in, uh, urban planning, I think. Is this-
Victor Pineda: Yes …
Tim Lynch: and, and has done some other work as well. You got your BA here in political economy, you got a BS in, in business administration, and then [00:17:00] went on to get a master’s here in city and regional planning, and then eventually a PhD at UCLA-
Victor Pineda: Yes
Tim Lynch: in, in that. Is this… Is your urban planning stuff based around disability and accessibility?
Victor Pineda: Yeah, I think you could think of it as urban transformation. What are the ways in which we move around space, and what are the ways in which space either limits us or enhances our potential? So even though I bring a lived experience of disability, as a scholar, as a professor, as an activist, you know, I also see this as, as a way of changing systems, right?
And so sometimes you have to break old systems so that new ways of doing things emerge, and that’s very much what Berkeley’s constantly doing, and that’s very much what gave birth to the independent living movement. You know, Judy Heumann, also as a disability activist, [00:18:00] you know, she said, “Change never happens at the pace we think it should.”
It happens because people refuse to stop pushing And, and
Tim Lynch: Judy Heumann’s an interesting case in point here because in some ways if, if the world was accessible to her, she never would’ve become an activist, right? She wanted to become a teacher, not an activist, and they said, “No, you can’t be a teacher ’cause you, you’re disabled.”
And she said, “Oh, I can be an excellent teacher,” and then had to fight for it.
Victor Pineda: Just watch me. Watch me. Just watch me. Just- Let me go. Yeah. And I think this is what the, the moment calls us. You know, we created a podcast called The Independent. Now, there was a wonderful magazine. You could go find it at the, or at the, uh, Bancroft Library, in the early ’70s.
The fledgling and early Center for Independent Living realized that as the [00:19:00] first disability-run, consumer-focused, you know, organization that was run for and by disabled people, that there were stories that needed to s- be spread across the country. So The Independent was published here in Berkeley and sent off across cities across the US to sort of replicate the mindset and the model of how to live a life that you decide, that you can choose, that you direct.
So our podcast brings back this idea of The Independent, and we added the subtitle, Meeting the Moment for Disability Justice. And we’ve had wonderful conversations with Congresswoman Lateefah Simon, with Mayor Ishii here in Berkeley, [00:20:00] with even Sean Heather, Oscar-winning director, who will be launching the biopic Being Heumann on Apple TV in the fall, that really brings to life this period piece of CIL moving 150 people into the longest federal takeover of a federal building in protest of disability rights and in, in the pursuit of changing sort of the trajectory of American history.
So those podcasts are gonna give the audience a rich understanding not only of what the c- current issues are, but how they can take action to meet the moment.
Tim Lynch: Mm-hmm. Your… You mentioned in your [00:21:00] urban planning work that it’s transformation of systems, and I think one of the things that the disability movement has shown us is that when we make things more accessible for disabled people, it benefits all kinds of people. Like curb cuts don’t just benefit wheelchair users, right? A mother with a stroller, a person with a, a delivery person. How is this idea of universal design influencing things that came out of the disability movement?
Victor Pineda: Yeah, I think that, you know, a, a foundational principle of independent living philosophy is about changing the place of power, right?
So universal design is a way to design spaces, even products and services, in a way that benefits everyone with the least amount of special modifications. So think of it as a design standard or a principle [00:22:00] that if you’re deaf, if, if you have difficulty seeing, difficulty hearing, difficulty moving around, difficulty climbing up, uh, you know, a flight of steps, you still have Access, choice, and control of how you interact with that place, product, or service.
And so really, it was a radical reimagining. Here at the Department of City Planning and Architecture in Wurster Hall, you know, professors like Fred Collignon and Ray Lifchez and others over the years really looked at these new ways of designing spaces. And when I was an undergraduate sitting in one zero six Wurster Hall, I thought about, wow, what would the world look like if an entire city [00:23:00] was universally designed?
And, you know, lo and behold, after graduating Berkeley, I worked on developing the United Nations Convention on the Rights of Persons with Disabilities that has impacted the lives of one point three billion people and signed by a hundred and ninety, ninety countries around the world, not the US.
[Tim Lynch]: Huh.
[Victor Pineda]: Yet, uh, even though the principles arise from the US experience.
And then I was invited to consult with governments and cities and mayors around the world to bring the principles, again, that emerged out of Berkeley, became law with the ADA, became a template for what inclusion and access looked like, and then informed this UN treaty to help other places around the world [00:24:00] build societies, communities, and places where discrimination and barriers were a thing of the past.
And I’m very proud of the work we did on the Dubai Master Plan and the, the strategies around access and inclusion in Ecuador and Amsterdam and in many places, uh, around the world. But ultimately, I came back to Berkeley To work at the Center for Independent Living because I felt that we have to meet the moment, and this, this incredible place needs to get ready for the next 54 years of work.
So not only is the podcast now telling our story and meeting the moment available on all platforms, Apple TV, Spotify, YouTube, and everything, but now [00:25:00] there’s an incredible new movie coming out on Apple TV. There’s a first biography on Ed Roberts called The Independent Man, written by Scott Danforth.
There is a new quarter published by the US Mint that features one of the program managers at the Center for Independent Living. Stacy Park Milbern passed away during the pandemic, but was a very active, uh, member of the Bay Area queer and disability justice communities. So what I’m saying is this is not a moment to rest on our laurels. This is a moment to reclaim our radical legacy and shape the future together.
Tim Lynch: Is this especially important given the current regime in Washington?
Victor Pineda: Look, we just [00:26:00] had last week a devastating setback. Which is called a memo, a memo by the Justice Department to backtrack on twenty years of disability rights, which is the Olmstead Act.
The Olmstead Act was a decision by the Supreme Court to ensure that people with disabilities could get the services in their local communities in the least restrictive way possible, so that they don’t have to go to a nursing home. The loc– the states and local governments would mobilize resources to help people live in their own homes.
Now, it’s thirty-four cents on the dollar to keep somebody in their home versus a nursing home. So the fiscal [00:27:00] conservatives that think it costs too much to provide independent living services are crazy because it’s three times the cost to put me in a nursing home and basically lock me up and, and deny my chance to contribute to society.
So I’m very, very worried about this. And, you know, we’ll be marching on Washington in a few weeks’ time for the thirty-sixth anniversary of the Americans with Disabilities Act. Somewhere between five hundred and a thousand disabled folks are going to organize kind of a big sign of solidarity that disability rights are human rights, and disability rights are part of the American story.
It’s what makes us great. You can’t make America great by denying dignity and opportunity and denying the things that people look to us [00:28:00] As an aspirational model. So, you know, that’s not gonna happen, not over my dead body.
Tim Lynch: Victor Pineda, there’s so much more we can talk about. How– We are out of time, though. How do people get in touch with the Center for Independent Living to get involved?
Victor Pineda: Well, check us out on social media and on our website. Sign up to volunteer and get involved. TheCIL.org. That’s T-H-E C-I-L.org. Check out The Independent: Meeting the Moment for Disability Justice on all major streaming platforms, our podcast, and come to our big party on July 11th, all day at the Ed Roberts Campus, and bring your friends. Uh, we really want you to be part of this new chapter, um, because [00:29:00] we’re not going to win if we do this apart.
We’re only gonna win if we do this together. Thank you so much.
Tim Lynch: Victor Pineda, thanks so much for joining us on KALX and Berkeley Brainwaves today. This was amazing. Thank you for all you do too.
[Theme music starts] This has been an edition of Berkeley Brainwaves with Dr. Victor Santiago Pineda. Berkeley Brainwaves is heard every other Tuesday from nine to nine thirty [AM], alternating with Fiat Lux Redux, a program of podcasts from other units on the Berkeley campus. My name is Tim Lynch. Thank you for listening. Stay tuned for The Berkstir with Sonic Sounds coming up next. [Theme music ends]
Victor Pineda: My name is Victor Pineda, and I’m the executive director of the Center for Independent Living, and this is K-A-L-X Berkeley.
