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(Unedited) Podcast Transcript 565: Ed Roberts – An Independent Man

This week we’re joined by Professor Scot Danforth of Chapman University to discuss his book An Independent Man: Ed Roberts and the Fight for Disability Rights. We chat about Ed’s life, the origins of the disability movement, and creating access for all.

Listen to this episode at Streetsblog USA or find it in the hosting archive.

Below is a full unedited AI generated transcript:

[00:02:55] Jeff Wood: Well, Scot Danforth, welcome to the Talking Headways podcast.

[00:03:00] Scot Danforth: Thank you. Good to be with you, Jeff.

[00:03:02] Jeff Wood: Yeah, thanks for being here. Before we get started, can you tell us a little bit about yourself?

[00:03:06] Scot Danforth: I am a professor of disability studies at Chapman University, which is in Orange, California, Southern California.

I specialize in studying the disability rights movement.

[00:03:17] Jeff Wood: Nice. And what got you into thinking about these issues? Like what was the first introduction to the issues that you’re studying?

[00:03:24] Scot Danforth: I’m a faculty member in education. I have been working for a long time on what we call inclusive education, which is how can you not segregate kids with disabilities?

Into separate classes or schools, how can they be integrated and, uh, learn with the non-disabled peers? And I did that for a long time. And then I, I realized that many of the people around me who were working on these same issues knew nothing about where our access laws, the Americans with Disabilities Act, uh, section 5 0 4 of the.

Rehabilitation act. They knew very little about disability rights and I started thinking, where did all this stuff come from? So initially I wanted to find out where it started it. It sent me to the University of California Berkeley and the protests in the late sixties to start to dig up how did disability rights become a thing in the United States?

[00:04:22] Jeff Wood: And so you wrote this book, an Independent man, ed Roberts in the Fight for Disability Rights, which is, uh, you know, really an amazing work. I’m impressed by the breadth of it and the amount of information that you give us. What got you thinking Ed Roberts would be a good topic to discuss.

[00:04:36] Scot Danforth: So I stumbled upon this group.

Of students. These were students who were living with various kinds of paralysis, and it was 19 68, 19 69 on the Cal campus and the group was called The Rolling Quads, and they were led by Ed Roberts. And so I studied them. They had a big protest where they fought the California Department of Rehabilitation.

They came up with very different ideas. Their notion wasn’t that disability was about being sick. Needing better healthcare, although that’s always useful. It was a political problem, and that was astounding idea. But I realized in doing that work that Ed Roberts, there was no biography of the leader. How will people know about disability rights if we can’t know about the leaders?

So I said, well, I better, I better learn how to write a biography and spend eight years. Thank you for the compliment on the book. Spend eight years studying Ed and the people around him too. It was certainly wasn’t a solitary venture. He was part of a a team.

[00:05:48] Jeff Wood: What’s interesting, you know, here in the Bay Area, obviously I’m in San Francisco and I worked in Oakland for a number of years and I take BART a lot.

And so, you know, when the Ed Roberts campus came to be a part of the Ashby BART station, that was a big deal. And then, you know, you have to start thinking like, well, where did this name Ed Roberts come from? And the book kind of lays it all out. But I’m also wondering about Ed himself and you know, where he came from and what you learned about where he came from and what he went through.

[00:06:12] Scot Danforth: Yeah, he was a kid from, uh, the, your side of the bay, from Burlingame, just south of the airport. Then it was a very working class area. His dad was a railroad union man. He had three brothers, but you know, as a teenager, this is in the mid fifties, he came down with polio and he spent 18 months in the hospital.

With all kinds of therapies and treatments and everything that they could do to sort of put him on his feet. And it had no effect whatsoever. He was in an iron lung. An iron lung is a giant sort of steel, A steel can, an enormous box that puts pressure on the body so that it pushes your lungs to breathe.

And, you know, we came home and they set up a, an iron lung in the living room. He was really faced with a, the problem to him wasn’t just, you know, my body doesn’t work the way I want it to. He was paralyzed from the neck down. The problem was, how was he going to have any life at all? No one in the late 1950s thought that someone with that kind of disability could go get an education, could get a job.

Could travel in the community or go to a restaurant. It was just his, his fate was to be a tragedy, to be a figure that, to stay in a back room and stay out of sight. And he really refused. He and his mother too. His mother, uh, zona, refused to let that happen. And as they forged a path for him as he broke down doors and pushed his way.

Into the local high school. Then on Dekal. I mean, he was opening doors for others simultaneously, and he was very, very aware of that. He didn’t just feel he was doing something for himself. He always knew that he was the first one through when he was trying to bring through the rest of the gang.

[00:08:09] Jeff Wood: How did he get his personality?

Because that was one of the things that helped him continue and move forward through this ordeal. Something that is really impressive about Ed was just his, uh, somewhat prickly, but also, uh, but also shining personality.

[00:08:23] Scot Danforth: It’s true. We, we, uh, decided the book cover is just overwhelming purple. That just punches you in the face, uh, pink.

[00:08:31] Jeff Wood: I love it by the way

[00:08:31] Scot Danforth: saying purple is pink. These very bright colors. And that was him. He was, he was fun loving. Arrogant over the top, full of himself and yet very caring, very sensitive. At the same time. This was, this was a guy who he learned that he was going to have to fight every day for every inch he gained, but he also took relish in it.

He really enjoyed it. He even enjoyed losing because he was gonna show up the next day and go at it again. And he became part of a crew at Berkeley. Berkeley, I think of Berkeley in the late sixties protests, uh, the free speech movement, Vietnam, the People’s Park protests. I mean, all of that was the background.

It was the perfect place for Ed and the people around him and his partner. There was, uh, his buddy John Hessler, uh, another man who was paralyzed. And used a wheelchair and they just, they learned how to be radicals. They learned how to take to the streets, and they learned how to win victories over powerful institutions through civil rights tactics, so that, you know, ed was always this guy who loved being on the stage.

He loved being in the limelight, and he loved having a good fight.

[00:09:52] Jeff Wood: I wanna learn a little bit more about polio too at that time period. You talk about in the book where, you know, he was not very far away from, uh, Jonas Salk releasing the vaccine, and I’m fascinated by what it was like then in terms of what people knew about the disease and what happened to folks, but also what have we lost since then in terms of knowing what it is and what it did to people.

[00:10:14] Scot Danforth: Oh, oh. I don’t think we’re aware now. I think as we’re, as our federal government’s telling us, oh, vaccines aren’t important. In the early 1950s each summer, the warm weather seemed to be the time, and polio was a virus, and it seemed to be the time when, when people. Polio. And you know, for some people, like, I’ll give an example of the, the rockstar, Neil Young.

Neil Young, had polio and went to, went away to a hospital for about a week in Canada and he, he came back and he learned how to walk again and, and went on with his life. And that was pretty typical. But for some people, the polio would have stronger effects. And that was an extremely small population, but that population would end up paralyzed and sometimes dead.

And it depended upon whether the polio entered into the stem of the brain and began to shut down functioning in the body. So it wasn’t that the muscles wouldn’t work anymore, the signals from the brain could not get to the muscles. But in the mid fifties, everyone was scared. I mean, mothers were afraid to send their children to the local swimming pool or to the, the theater ’cause they weren’t really sure how you caught it.

But they knew everyone knew somebody. Everyone knew someone who had polio. Everyone knew that story. But then the development of the vaccines, there were two different vaccines. Soc developed one. Another man named Saban developed one a couple years later. The Slk one involved a couple of injections and that was used widely.

The Sabin one was even cheaper. It just involved taking a little sugary lozenge and putting it on your tongue, and that one was spread all around the world. You wanna know how polio was wiped out across. We’re almost wiped out across many countries. In, in Africa, for instance, they took the Saban vaccine ’cause they could send these little sugary lozenges with the vaccine all over the world and not worry about refrigeration.

But it was, it was a scary, scary thing. And we are out of touch with that. We’re too confident. We assumed that once you defeat something like that, that it’s not gonna come back. But we have to keep vaccinating children.

[00:12:32] Jeff Wood: Yeah, it’s another, it’s another discussion, but it’s, I feel like this is also a really important lesson to learn about what, you know, ed went through, but also what affected him.

I mean, how he got polio was extremely devastating and, and having to sleep with the iron long every single night and, and not be able to go on trips unless he did this magical, you know, breathing technique. The things that he had to do to live a, a life was something that most people don’t have to contend with.

I’m interested also in, you know, people don’t know what an iron, you mentioned iron long earlier, but it’s like a box. Maybe the size. What The size of a Volkswagen?

[00:13:04] Scot Danforth: Yeah. It’s a pretty, it’ll fill a room.

[00:13:06] Jeff Wood: It’s crazy how trying to find an apartment that you can fit a box in like that.

[00:13:10] Scot Danforth: Well, and that was the trouble when he was admitted at at Cal, they had no housing to put that kind of contraption in.

He ended up in the campus hospital basically Calwell Hospital University. Luckily had a hospital on campus with an empty floor. Ed moved in and then the next year, John Hessler, this is 19 62, 63, and then by the late sixties they had about a dozen students with physical disabilities filling up this hospital wing right on campus.

And that’s where they began to talk to each other and to radicalize each other.

[00:13:46] Jeff Wood: I’m also interested early on about, and this is something I think kids go through a lot, but like they, they try to fi figure out what they can control. And early on the thing that he could control above anything else was whether he ate or not.

And, um, that was a very important, I feel like part of the book is figuring out what he can control and not eating and, and getting really sickly and then figuring out, well, this isn’t the way to go forward, but. Understanding that if you are that disabled and you’re, you don’t know what to do and you’re not, don’t have the experience he did later in life, figuring out what you could and couldn’t control, and then being stubborn enough to say, okay, well I’m gonna do this.

I mean, I feel like I’ve done that a few times in my life where like I grew my hair out on my beard. ’cause I, I could, uh, you know, nobody’s telling me to shave my beard, so I’m just gonna do it kind of thing. You know, I kind of empathize with them in that sense, in that time in his life.

[00:14:36] Scot Danforth: Yeah, I think it’s a lesson for all of us.

We all wonder. What we control and what we can’t and how to let go, what we can’t control. And for Ed as a teenager, initially, you know, in the hospital, he could control almost nothing. And he realized he could control whether food went into his mouth. And so at one point he was very depressed and he essentially stopped eating.

He essentially refused to eat and he later described it as a suicide attempt. But when he finally did. Take control in a more positive way, which was decide, yes, I’m going to eat. Yes, this is my body, this is my life. And then he began the very, very slow work of creating what I would call a persona. A character.

To give an example today, if you’re a a, a young person with a disability, whatever the disability is, you probably can look out in society and find role models. There are some people that you can look to that you know are making it, that are doing well in society. I’m, I’m not saying enough of them, but there’s some people you can look to and say, Hmm, look at that.

I could be like that. That wasn’t true for him. There was no one like that, and he really had to cook up a character and this took him years in his mind that he was. He was this person with this really unusual body, with this really unusual life, but he was going to live that life out in the world and make it as good as he could, the best that he could.

[00:16:11] Jeff Wood: How did his parents impact that?

[00:16:12] Scot Danforth: His mother, zona, especially, she taught him how to fight. She was not a person who was a fighter. Let me put it though, she’s a very, she just died a year ago, a little more than a year ago at 105. A small rather. Down to earth, gentle woman. But for instance, there was an example where Ed finished all the high school requirements at Burlingame High School, and the administrators told him and his mother repeatedly that he could not graduate because he had not completed driver’s education and physical education.

And Zona was just. Flabbergasted. How could these smart, educated people think that Ed was going to do PE, but

[00:16:58] Jeff Wood: or drive?

[00:16:58] Scot Danforth: She went and, yeah, she went and fought for him. You know, there’s a scene in the book, which is very much like a movie scene, this very nervous in over her head, mom with her notes, she’s ready for the meeting.

She goes to the school board meeting and she has to, you know, stand up and make her case. For them to give an exemption and give him the high school diploma. Now, luckily for her, they had already decided to grant that, so she didn’t even have to make the request, but she was ready for it. And, uh, the minute they told her that Ed was graduating, she just sat down and cried.

But she was a powerful figure, not only in learning to fight, but in getting him out of the house. Part of that was she knew when he came home from the hospital. That as long as he was in the living room, lying on his back and an iron long and he’d get out in the daytime, but he’s still in the living room and DI didn’t go very many places as long as he was in the house, she was stuck there too, and she wanted more for herself.

So there’s, in the book, there’s a feminist story undercurrent, which was she, she was seeking her own liberation. She wanted to be more than a housewife. She wanted to get a college education. I’ll tell you later on, she actually went to Cal herself and graduated. She wanted to be educated. She wanted to travel, she wanted to work.

She ended up, uh, getting master’s degree, becoming a counselor. She wanted a bigger life outside the house, but she had to get ’em out. So the two of them had to get themselves out of the family living room and out into the world and do something bigger.

[00:18:37] Jeff Wood: I wonder if you could tell us a little bit more too about, I mean, you mentioned the administrators who wouldn’t let ED graduate ’cause of driver’s ed and, and PE requirements, which are obviously silly at this moment in time.

To them it might not have been, but uh, that’s the thing is I’m asking is what were the attitudes like about disability at the time? What were people thinking when they saw somebody like ED or when they had to approve disabled people to graduate, those types of things.

[00:19:02] Scot Danforth: They didn’t see someone like Ed.

That’s the key. They didn’t. And so Ed, you know, he lived across the street from the high school and his mother, his mother made him go over there and he did finish his requirements. But to any reasonable person, you would not expect anything of Ed’s life. They weren’t just saying he was going to do driver’s ed.

They were saying, how is this gonna matter? What are you going do? What’s this high school? The, the administrators thought that his mother’s head was in the sky that she was dreaming of. Unicorns. This is silliness. This is, don’t, don’t. Why are you even doing this? There’s no future for a person like that.

[00:19:49] Jeff Wood: But he had a huge future. I mean, he moved to Cal and that just opened up a whole new world for him. I mean, he, you know, had all the folks that were also disabled come and kind of gathered. It was like, you know, if you, if you are in a movie, if you’re writing a movie about this, this is the scene where they, you know, go out and collect all the friends that, that are gonna help you later on.

Right, right,

[00:20:07] Scot Danforth: right. You collect him. There’s a scene where they’re all hanging out. There’s smoking pot. They’re listening to the Grateful Dead, and they’re all realizing. That before they came together, each of them thought that their predicament was individual, that it was because of them, that their life was limited, and this helped them to depersonalize and de individualize to realize, well, wait a minute.

The obstacles you’re bumping into are the same obstacles I’m bumping into, and it’s about the world out there. They’re not even letting me do what I can do. So it really was, you know, like a radical, I mean, ed was a political science major and you know, did an education all the way through his PhD. Didn’t write his dissertation, but, so he was highly educated in politics.

But this, there was no better place to learn radical politics than Berkeley in the late sixties. They were schooled every day about how to become a movement.

[00:21:07] Jeff Wood: And they did. And then they went and they got curb cuts. You know, they went to Berkeley City Hall, they got them in buildings. They fought for things that they knew were important like that.

And from a transportation standpoint, they got their electric wheelchairs, which is a mobility thing. The discussion we have a lot of the times on the podcast is about access, right? And accessibility. And they were opening up people’s eyes about what accessibility actually meant.

[00:21:29] Scot Danforth: And you’re right, the beginning, and this is something most of us don’t think too much about.

We probably see someone out in public using a wheelchair, and we don’t think too often about the technology of the chair. Occasionally you see someone getting sort of pushed on an old fashioned. Wheelchair, whether somebody pushing them on the handles behind them. But more often we see a pretty high tech device with an electric motor.

What that did, and this is a mid sixties invention, the initial ones actually were just this funny little motor unit that you stuck onto the back of the typical old wheelchair and just, uh, souped up a regular wheelchair. And they were pretty dangerous, but it, it allowed young people. Ed and his friends to go out on campus without a chaperone, without a wheelchair, pusher.

There’s an incredible lack of privacy by always having somebody take care of your, your physical mobility, and when you could suddenly be the person who says, yes, I’ll go get the beer. Yes, I’m coming across campus to this party. They were thrilled. They were, I compare it in the book to sort of, uh, early 19 hundreds, maybe 1920s, you know, with the automobile and where suddenly there’s a privacy for young people to get in the automobile, the family automobile, and to get away from the house and to get out on the road.

And suddenly now you have, you have your own way of getting around. You have your own mobility, but you have a privacy. And an independence, a freedom. And it’s not exactly the same. You can’t go as far in a wheelchair as you can in an automobile, but it was an independence and a freedom, a tremendous technological step forward.

[00:23:19] Jeff Wood: But to use it, you had to have curb cuts, you had to have access. Yeah. Uh, from the built environment. And, you know, people at the time, they didn’t see people with wheelchairs, so they didn’t think that there was a problem. They were, they were invisible. And so. The problem was invisible. Obviously, we know now today that, and as a parent now, I know that curb cuts are hugely important for strollers and, and, you know, getting all over the place.

But that lack of visibility really didn’t help and they had to make themselves visible in order to get these changes enacted.

[00:23:46] Scot Danforth: Right? And they were, they were lucky. There was a development that they took advantage of. The People’s Park basically protest thousands of people, essentially a riot that was very violent.

I ended up with lots of injuries and involvement of the military in 1969, and that left a lot of the downtown Berkeley area is just a mess. And so the Berkeley City Council. You know, very thoughtfully said, we’re not just gonna clean up. We’re gonna redo all the sidewalks. We’re gonna make it all new and spiffy and take a step forward here.

And Ed and his friends, including John Hessler, Hale Zuka, Hale became the, the real leader when it came to all physical access and, uh, transportation and mobility issues. They went to the city council and said, Hey, we wanna get around in Berkeley. Can you do this? They called them ramps. In those days they didn’t call them curb cuts, but can you do this, you know, on the new sidewalks give, give us some slants on the corners.

They even had designs, they had worked up designs for this, and the city council thought it was a very reasonable request. They had no idea this request was coming, like you said, to the non-disabled person. I mean, even to this day, you know, I was, I was, you know, in Berkeley a lot doing the research. I was in the hotel one day and a man asked me, Hey, you know you’re visiting, what are you doing in Berkeley?

And I told him, and he said, oh, oh, I own, I own a store, a tuxedo shop, and I that Americans with Disability Act. I just can’t stand that. I don’t get any disabled people. He’s telling me now.

[00:25:24] Scot Danforth: I don’t get disabled people in my store. Why should it be accessible? And I’m like, oh God, that, that still, that attitude is still there, especially considering that most kinds of physical access are pretty cheap.

Most of them, I’m not gonna say all of them, but most of them are not all that expensive. So that attitude was that, you know, well we, we don’t see people like you out in public. We just assume you didn’t, you didn’t wanna go in public. Same, you know, didn’t wanna go. No. We all wanted to stay in, in our parents’ back bedroom.

Of course, that’s what they wanted. So Ed and his, his crew, they came out, they made their voices heard, and 1969 they created curb cuts in Berkeley, in the downtown area. They quickly, they launched a project to try to do the same in Oakland. Oakland’s right next door, you know, and then they had some, uh, leverage.

But really if you go back, I mean, everyone likes to say Berkeley was the beginning. From what I can tell, the first curb cuts were over a decade earlier in Kalamazoo in Michigan. And again, this was what happens is, uh, somebody has a need and they approach leaders. And when the leaders are open to it and reasonable, they listen.

In Kalamazoo was a lawyer who had a physical disability and he came to the city manager and said, can you, you know, create some ramps in the downtown area so I can get around? And the city manager just so happened to have a son who used a wheelchair. And so sometimes you get that little bit of serendipity and so they made the downtown.

The sidewalk’s accessible, but as you realize, that creates a whole new problem. Now, people want to go somewhere now they can, they can get on the sidewalks. It doesn’t mean you can get into the store. It doesn’t mean you can get into the restaurant. It doesn’t mean you can get into the restroom. Doesn’t mean you can get on the bart, you know, line it, it, you can get two things.

But now there’s more access issues.

[00:27:24] Jeff Wood: Yeah. Yeah. Well, I’ll ask you about a ADA in a second, but we also had, you know, we had Sarah Hendron on in 2020 to talk about her book. And I dunno if you read this book, what a Body Can Do, um, it’s episode 308 for folks who wanna listen back to that one. But she talked about Ed as well and shared ideas about designing for independent living, which I wanna ask you about next.

But I think it’s really interesting the, the idea that for disabled people, there’s always this whizzbang wanna make a. Technology, like a wheelchair that can like go upstairs or things like that. And it’s actually, you know, if you can make it so that people can live independently and you can do these designs, like curb cuts, it might make it better for everybody.

Universal design and those types of things. So I’m, I’m fascinated by that too, is this idea that, you know, we, we sometimes maybe think about technology as something that can save everybody from something, but it might not be something that’s necessary if we can figure out a way to do the easier things first.

[00:28:13] Scot Danforth: We also have grand heroic notions of technology. So as you, as you just pointed out, we’d love to see all that wheelchair that can climb the steps.

[00:28:24] Jeff Wood: Yeah.

[00:28:24] Scot Danforth: Or if you’ve ever seen the, the, um, I don’t even know the word for it. There are these. There’s this armature that you can put on like an exoskeleton,

[00:28:33] Jeff Wood: right?

[00:28:33] Scot Danforth: Yes. That’s it. Exoskeleton for a person with a physical disability, oh, let’s get everyone a $25,000. I don’t know what it costs.

[00:28:40] Jeff Wood: Yeah,

[00:28:40] Scot Danforth: right? Sure.

[00:28:40] Jeff Wood: It’s something

[00:28:41] Scot Danforth: like that. A $25,000 exoskeleton, you know, and okay, that’s great. In some kind of. Futuristic movie, but in real life, what happens is, and I, I swear here, I’m supposed to be the guy who knows something.

I’m having, you know, coffee in my office with a student who uses a wheelchair and I say, Hey, uh, actually I wasn’t having coffee. We were talking and I said, Hey, let’s get coffee. Let’s go across the street to my favorite coffee shop. So we go across the street. I didn’t even realize into the coffee shop was about a an inch and a half step up.

It was the smallest bump up, and I never noticed. Why did I never noticed? I’m not the guy in the wheelchair. I didn’t, so I’m embarrassed. I brought my friend and he can’t even get in. And then of course, the next week I go back to my coffee shop by myself. And when I went to the restroom, here’s the shop that you can’t even get in the front door with the wheelchair, but the restroom has every access feature available.

We often are just so foolish. So it’s not about getting the exoskeleton. Sometimes it’s just about some really simple common sense kinds of steps that make things better.

[00:29:53] Jeff Wood: This is also a story about pushing past perceived boundaries and perceived limits, understanding that there’s a bigger pie out there.

If you make it bigger, there’s not a zero sum game, and so I feel like this is something that the book teaches as well.

[00:30:06] Scot Danforth: Yeah, there was an idea. One of the difficulties that Ed and his friends. As they attempted to bring the disability, well, what I’m now calling the disability community, using the singular attempted to bring them together in the seventies was to realize that it wasn’t one community.

Often it was broken up into many organizations based on disability. There was a group for the blind, a group for the deaf, a group for paralyzed veterans. There were all these subgroups that all battle at the state level. At the federal level for a very small pot of money. And when you first went to these groups and said, let’s come together.

Let’s come together to fights for some common goals, they all thought, no, we’re gonna lose our part of the pie. I know it’s too small, but we don’t wanna lose our little piece by joining up with you. And so one of the advances they made, one of the. The great discoveries they made was they people with different kinds of disabilities and from different walks of life and different racial groups could come together under one banner, that they could make some progress that wasn’t possible if the organizations for the blind were fighting over here in the organizations for people with developmental disabilities.

Were fighting over there. So Unity was a, a new idea. They assumed that they could expand opportunities and federal funding, and they found that that was true. Now, they, I’ll tell you today that funding for virtually every kind of support program at the federal level is, is, is much too low. But they still found possibilities for expansion and for making progress.

[00:31:56] Jeff Wood: Their thinking also brought this new thinking on independent living. And I wanna read this quote from the book ’cause I, I feel like it captures it really, really well. And it says, this shifted the focus from what a person could do by themselves to what they could achieve with suitable assistance. Tying one’s own shoes or buttoning up one’s own shirt wasn’t the best use of time and energy for a disabled person who, if supported by a personal attendant, could successfully complete a college education or program computers for IBM.

[00:32:23] Scot Danforth: Right, and this, this was a, the term independent living, which now we use often. So right. In Berkeley, we have the Center for Independent Living. There’s over 400 of these local operations around the country where disabled folks can go and receive support from other disabled people. The notion of independent living originally in the rehabilitation profession meant helping people learn to do more.

And so I’ll give you an example. The after World War ii, there was a program at the University of Illinois and a program that benefited many, many people with physical disabilities. ’cause it brought folks with physical disabilities onto campus to go to college. And that was a big breakthrough. But that program required that you had to be able to take care of your own physical needs.

You had to be able to bathe yourself. You had to be able to get out of your bed, into your clothes, into the shower. You had to be able to feed yourself, tie your shoes, et cetera. And that left a lot of people out. But Ed and his friends realized that with just, you know, a small amount of assistance from an attendant, someone who, who can’t tie their shoes, who, who you know, ed spent his entire life.

Here’s this man I wrote this book about. Who changed the world and traveled the world, you know, making incredible leaps every day the food entered his mouth because someone else scooped it in every day. So as long as he had support and assistance on some of these daily care tasks, and not just true for him, true for many, many people, the sky was the limit.

What he could do, get an education, jobs. Recreation, relationships, et cetera. But no, he was not going to feed himself. And so if you require someone to leap over a threshold, which is well, once you can feed yourself and close yourself, now we’re gonna take you seriously. That cuts out a lot of people and a lot of really talented people.

[00:34:30] Jeff Wood: Yeah. You can become the head of a state agency, right?

[00:34:34] Scot Danforth: Yes. You could run what is. When he ran the Department of Rehabilitation? No. The largest state disability related agency in the country run by a man who at one point was turned down by that agency because the agency called him, and I quote infeasible, when Ed first applied for funding from the California Department of Rehabilitation, they turned him down.

They rejected him because he wasn’t worth their money. And what was that 1960? And so by 1975 under the first governor, Jerry Brown administration, 13 years later, he’s running that organization. So if you put the right pieces in place, anything can happen.

[00:35:19] Jeff Wood: How much did the myth of Ed Roberts feed into an eventual destiny?

You mentioned earlier, and you mentioned the book too, how, you know, Ft R was really the only person that people ever saw in a wheelchair before that, and, but he wasn’t really, you know, he wasn’t really that open about it necessarily to the wider world. But Ed became someone who people looked up to someone who they said, oh, well we could be like Ed, or Ed can help us, or those types of things.

Did that feed into his ego at all? Did that, but also how did that. Feed like the myth of it, of him being this larger than life character in the world lead into something that actually came to pass in the end.

[00:35:54] Scot Danforth: I think, um, I can, you know, relate it to other famous, I mean, he, he was famous within certain circles, but I can relate it to other famous people and, and the mythologies that surround them, I think of, of athletes and the stories that you hear about athletes.

I, I love one of my favorite, the Boston Celtics. So Larry Bird, there used to be a story that he wouldn’t just make the great shot at the end of the game. He would tell the man defending him, this is what I’m going to do. There was a whole mythology around him that added to his aura and his power and his presence.

And it was the same for Ed. Ed became known around the world as this, uh, the hope of the disability community. And then, yes, he used that to his, uh, benefit. He used it to the benefit of the movement. Um, but also, yes, it went to his head. He, he promised things he couldn’t deliver. There were times when he was much too big for himself there.

There’s two sides to that knife. Yeah. Um, it, it really helped him and, and, and there’s times that he believed his own press clippings a little bit too much.

[00:37:03] Jeff Wood: He wasn’t the only one. There was many folks around the country that were advocates in this way. And there’s actually a kind of a, um, not a West coast, east coast, but like a Texas versus a, a Berkeley factions as it were.

Um, I actually saw Lex Frieden who was in the Texas faction speak in, in October, and he had like this virtual avatar that he had created and was able to project onto the screen from his home in Texas to Portland, Oregon. But I’m interested in this Berkeley versus Houston kind of model and the discussions about.

The segregation of disabled people for service purposes, as well as those different political factions and what they felt like they could achieve based on realities that were on the ground.

[00:37:41] Scot Danforth: Yeah, and l Lex was wonderful and did a, a very lengthy interview with me and did really let me ask him hard questions.

I think in Ed’s mind, we, we tend to think of great civil rights leaders as just being on a. Pedestal and nothing gets in their way. But really there are, there are egos and there are internal struggles. And Ed viewed Lex Frieden, who was a Texas-based disabled man and a leader of independent living in Houston.

He viewed him as sort of a rival. Now, there’s many reasons to view him as a rival. For one was Lex was just very talented and very, very smart and very articulate. He, he could do a lot of what Ed did, but he, his politics were different. Houston was not Berkeley. The Houston politics were mild, and this was, frankly, you have to realize it was true for most of the country.

There’s not many places like Berkeley or, or even San Francisco. The politics are different in Omaha, you know? So for Lex Freedom, what happened was people with physical disabilities in Houston, he helped them. To create a number of sort of apartment complexes or sections, portions of apartment complex where they would get every single apartment and then they could share attendance because the problem they had in Texas was there really was no way to recruit personal attendance to pay for them.

It was just a real big difficulty, and so to live close together. Was the model, you know, that they came up with and it worked for them. But yes, it was very segregated. It was the opposite of what the Berkeley crew wanted. Ed and his cohort in Berkeley had decided long ago. Segregation is the anathema that is, that is the enemy.

We do not wanna be segregated, but they also had to their benefit from the 1950s. There’s been funding in California to help pay for, in-home support for people with disabilities. And so while it was a challenge to recruit and train and find good personal attendance, that was a challenge that the folks in Berkeley took on.

But there was funding and Berkeley they had that in Houston they didn’t. So they end up with very different approaches and they kind of bump head to head. The interesting thing is you jump ahead in the story and you mentioned the Americans with Disabilities Act and realize that that was put forward and carried.

You know, the football was carried over the line in the late eighties by Texas Republicans. You know, the Bush administration and Texas conservatives were the ones who actually passed. They did it in a bipartisan way with the Democrats being involved. But. It was not Berkeley radicalism that made the a DA happen.

That was not Ed’s stage.

[00:40:44] Jeff Wood: I was wondering about that. ’cause I was reading the book and I noticed that Ed was a little bit absent from those 1990 a DA. Um, he wasn’t absent from the discussions necessarily, but he wasn’t like leading his face wasn’t the front of it. It was Lex and Dart, right?

[00:40:57] Scot Danforth: Yeah. And Justin Dart, who was another disabled man from Texas, from a very, very wealthy family.

Now we have to realize Justin Dart, who had I, I go in one chapter, he had really a, a very, very difficult life of, of depression and addiction, and when he finally kind of rose from the ashes and decided I’m going to do something good, he rushed off to Berkeley. To learn from Judy Human and Ed Roberts, how to be an activist in this disability rights movement.

That was already underway, but he was well positioned. He had a family that had an in with Ronald Reagan and the Bushes, and so he had, he had a political access, so he took what they taught him and he became the figurehead. He became, you know, in a different story, it would’ve been Ed Roberts in a different movie.

But in this actual, what happened? It, it ended up being the Republicans leading the way and they needed a Texas Republican, not a far left wing Berkeley long hair. Um, so he was in the background by that? Yes.

[00:42:04] Jeff Wood: I think it’s funny, I I, I was born in Humble Texas and I grew up in Houston, but my family is from San Francisco in the Bay Area.

I had five family members go to Cal. My dad and my, and my aunt and my uncle were there in that time period. And so it’s really interesting to see the two, because I’ve lived in two, both of them, uh, at the same time. And so I just find that really fascinating and I’m glad that. It all came to pass and his colleagues really did create a masterclass in organizing though this organizing the amount of press that they could generate.

But how do you find money for all these projects? I find that interesting too, because there’s money from the state for all of the attendance and the healthcare related things, but what about the money for the organizing and for putting out everything together?

[00:42:44] Scot Danforth: So their hub, their vehicle for getting the word out and for pushing things forward was the Berkeley Center for Independent Living, which is still alive today.

And Ed was a tremendous fundraiser. He had a sidekick named Joan Leon. Joan still lives in Berkeley, uh, saw her uh, just a few weeks ago. And Joan had a background in fundraising and she wandered into Ed’s life when he most needed it. And. Ed knew how to go into the offices of wealthy, big foundations, and he knew how to get money from them.

He just was very powerful. He was very persuasive. He came in to the Center for Independent Living and within 18 months he, he increased the revenue from, you know, under 50,000 to well over a million. And that’s in 19 $70. I mean, he knew how to raise money. He knew how to pull heart strings, and this was one of his great gifts, was convincing people to bet on him, and he, he really did this his his entire life.

Now, later he won the MacArthur, if you’ve heard of the MacArthur Genius Grant of the MacArthur Foundation, he won that, which was a large sum of money each year for five years. So that really helped. But he also was good at working with politicians. In California, he worked with the legislature to get passed a bill that would fund independent living centers across the entire state.

And later they were able to get a very, very similar sort of bill that would start the independent living centers that around the entire country paid for with tax dollars. Realize I’m talking about Ed, but he didn’t do these things alone. I mean, he was always surrounded by a team. I mentioned Judy Huon.

She was an East coast activist from New York City, and he just, he called her on the phone one day. She didn’t even know who he was, and he basically said, you gotta come out here. You know, he was recruiting for his team. He was the coach trying to bring in the star quarterback, and they worked together really for the rest of their lives.

[00:44:53] Jeff Wood: It’s, it definitely is a story of a group of folks, especially during a lot of the activism too. You have the fight for section 5 0 4, you got the funding for the centers. You just mentioned that. But the impressive part of that was during the Prop 13. Right. Which is

[00:45:06] Scot Danforth: Right, right.

[00:45:07] Jeff Wood: When you know, obviously here in California, as you know, it’s Prop 13 is still a very well-known entity and there was a lot of, uh, pressure to cut when that passed.

And, and they got, you know, that funding through, which is, I was reading the book and I was just like, that’s amazing because. Everybody knows Prop 13, that’s the third rail.

[00:45:24] Scot Danforth: It was amazing when, when Prop 13 went through for the, those who don’t know much about it, it, it put a, a limit on how much taxes on, on homes and properties could go up each year, which really limited the state government spending.

It really caused them to do some dramatic sudden cuts. And so the governor, Jerry Brown told both branches of the legislature. Anything, any bills you have that call for spending, forget it. Just drop ’em right now. And they went forward anyway. They went forward anyway. And I, I won’t tell that whole story. I want you to

[00:46:00] Jeff Wood: go read the book.

[00:46:01] Scot Danforth: I want you to go read, go read. There’s a heartbreaking Hollywood kind of chapter in there where they actually win and they actually get it through and Governor Brown signs it, but it’s, uh. It’s, it’s a little bit of a Hollywood kinda story,

[00:46:16] Jeff Wood: but the details are great. Go get the book and I’ll plug that in a second.

Also from a transportation standpoint on an urban planning standpoint, which is a lot of what we talk about on the show, I’m curious how Ed got around at the end. The only reference I heard, and obviously his wheelchair, but the only reference I read in the book was he had a van at the end, and so I’m wondering like if you knew more about how he got around, how he accessed, did he, did he use Bart to get places?

What was the access like for him to get around the Bay Area to get to the Center for Independent Living in Berkeley and all those types of places?

[00:46:48] Scot Danforth: Yeah, I know that making Bart accessible. In both the trains themselves, but also the stations, which often the difficulty was the stations themselves,

[00:46:58] Jeff Wood: the elevators.

[00:46:58] Scot Danforth: Yeah. In terms of elevators and, and all the different levels. And that was a big push for hail zuka. But much of the time, I, I know Ed got around in an accessible van. At the state, you know, he worked eight years for state government, so he had an accessible van there. In fact, did not only that he, but he outfitted his home with the latest high tech doodads.

Um, he, he loved technology and he had access. He was someone who would just call people up, you know, in offices in Stanford and Cal and say, Hey, can you do this? Can you do that? And people loved the challenge. So we often had, you know, even his wheelchair was, was very souped up. I mean, this thing could, could spin tires and, you know, he and had lights all over it to, he loved the technology.

He flew, he flew a lot.

[00:47:46] Jeff Wood: Mm-hmm.

[00:47:46] Scot Danforth: This was flying. He died in 1995. So this is flying before our current sort of, um. TSA and, and all the steps that we take. So actually he would send his attendant down on the tarmac to help the workers load up the wheelchair underneath the belly of the plane. ’cause you could even look up afterwards what percentage of.

Power wheelchairs get broken flying on airplanes and it’s pretty outrageous.

[00:48:14] Jeff Wood: Yeah,

[00:48:14] Scot Danforth: they get broken frequently and then he would, you know, get loaded on the plane, but often he would, you mentioned it before. The magic was, they called it frog breathing, which was, he taught himself how to swallow air and he could do it over long flights, but he flew around the world, so he did fly a lot.

[00:48:31] Jeff Wood: His wheelchair is at the Smithsonian too now.

[00:48:33] Scot Danforth: Yeah, it is. And there’s a chapter in there about that. Just because something’s at the Smithsonian doesn’t mean it’s in a,

[00:48:39] Jeff Wood: well, it’s like you said, it’s like the Indiana Jones end of, uh, Raiders of Lost

[00:48:43] Scot Danforth: Art. It’s in a dark, it’s in a dark dusty corner in a very large room.

Many things are stored,

[00:48:49] Jeff Wood: but the story of how it got there, I think is, is more important than it is there, I think.

[00:48:53] Scot Danforth: Yeah. Yeah. The story, the story is a beautiful story about how it got there.

[00:48:56] Jeff Wood: Yeah. What did you take away from writing this book? Oh.

[00:49:00] Scot Danforth: One thing, and this is, this might not be what you think of, but I spent eight years, day to day to day with a man who had already passed away.

I never met him and yet for me to research about him, this is, uh, in archives with many, many interviews. I spent my days with him, and so I, I know this sounds, it became my friend. It became a, a friend and someone for me to learn from. About living. At one point I, in an interview, his colleague, I had mentioned Joan Leon, who worked side by side with him for decades.

And I asked her at one point, you know, why? Why did you wanna work with Ed? And she said, well, from early on I thought he maybe had like the secret of life. And I kind of stood up. ’cause I’ll tell you, I’ve conducted a lot of interviews and people don’t say things like that. They just don’t say quotable stuff like that.

They say a lot of, uh, uh, uh, uhhuh, uh, the Secret of Life. And I thought, wait a minute, without getting too spiritual, without getting out of, you know, it’s supernatural. He, he knew something. He knew something about living. It’s because of how he was reduced to a body that only did certain things, and he was challenged with that and he accepted it, and then he tried to live big, and so I’ve taken.

I’ve taken a lot of lessons. I’m not him. I’m not him. I don’t live that way. It takes all my gusto just to do an interview like this, nevermind, go travel, travel the world, and shake the hands of world leaders. Uh, I’m not him, but I think I’ve learned a lot about living from it.

[00:50:50] Jeff Wood: Is there something that people don’t talk about or don’t ask you about the book that you feel like is important?

[00:50:56] Scot Danforth: Um, it, it’s, right now I’m doing, you know, interviews like this and, and. Doing events and stuff, and there’s a tendency, you know, the disability community and the activist community kind of comes out and, and they, they use the events as sort of a celebration often, which is great. That is wonderful. But the book is not just a book about a hero, it’s about a real man who makes mistakes and has flaws and, uh, doesn’t do everything right.

So I, I think the book is about a, a real person. And so, uh, yes, we’ve been speaking and I, I get excited about it. It’s hard for me not to, I feel sometimes like, yes, I’m talking about Babe Ruth, but, um, you know, I’m talking about a guy who had problems and difficulties and did things wrong, and, uh, insulted people when he didn’t want to, or left people out by mistake.

And that’s in the book. You know, I, I tried to write about him as a real person.

[00:51:57] Jeff Wood: I did notice that there’s a lot of, you know, being honest about certain things, the relationship with people of color, the relationship with women, and even people in his life. Those are a number of things that pop up in the book, but definitely go read it.

The book’s called An Independent Man, ed Robertson, the Fight for Disability Rights by Scott Danforth. Where can folks get a copy?

[00:52:15] Scot Danforth: Well, you first they go to your independent bookstore. That’s right. That’s your first, uh, your first stop. You can go to the University of California press, go to their website.

You can order directly from them. And if you wanna go to the, the big box places. Yes. Barnes and Noble, Amazon, all those websites they carry it to.

[00:52:33] Jeff Wood: Where can folks find you if you wish to be found?

[00:52:36] Scot Danforth: If I wish to be found,

[00:52:38] Jeff Wood: I always ask.

[00:52:39] Scot Danforth: You can find me on the web at Chapman University. Um, my email’s [email protected].

[00:52:46] Jeff Wood: Cool. Well Scot, thanks for joining us. We really appreciate your time.

[00:52:49] Scot Danforth: Thank you. I appreciate it, Jeff,

 


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