From Iron Lung to Icon: Honouring Ed Roberts with Professor Scot Danforth

Ed Roberts is often called the father of the independent living movement, but many people have never heard his story. This week, I’m joined by Professor Scot Danforth, author of An Independent Man, to explore Ed’s life, from contracting polio at fourteen and living in an iron lung, to becoming a key figure in disability rights.

We talk about the moments that shaped his activism, the power of the Rolling Quads, the curb cut revolution, and why Ed’s ideas on independence and attitudes still matter today.

If you want to understand where disability pride and modern disability culture began, this conversation is a meaningful place to start.

Connect with Scot University website: https://www.chapman.edu/our-faculty/scot-danforth.aspx

Buy the book: www.booktopia.com.au/an-independent-man-scot-edward-danforth

Connect with Peta Hooke

Instagram: @petahooke

Website: www.icantstandpodcast.com

Email: icantstandpodcast@gmail.com

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Episode transcript:

00:00:02

Peta: Hello, and welcome to the I Can't Stand Podcast, the show that explores what it's like to live with a disability. My name is Peta Hooke, I have cerebral palsy and I'm your host with the International Day for People with Disability tomorrow. I wanted to release a conversation to remind us where disability pride began. This week, we're looking back at the life of one of the most influential figures in disability history, Ed Roberts, often called the father of the independent living movement. Ed's story is one of determination, wit and reflects the power of collective action. I'm joined by professor and author Scot Danforth, whose new book An Independent Man brings Ed's journey vividly to life. Ed gained polio from fourteen. He lived in an iron lung for a time, and he experienced extreme ableism, saw a bit of a word of warning.

00:01:11

Professor Scot Danforth: There.

00:01:12

Peta: He fought for accessibility and dignity for disabled people around the world. Together, I talk with Scott about moments that defined Ed's activism, his philosophy of independence that he championed so well, and his legacy and how it can teach us about advocacy today. So without any further ado, let's get into it.

00:01:47

Professor Scot Danforth: I am Scott dan Forth and I live in California in the USA.

00:01:54

Peta: It's so lovely to have you hear, Scott. You're here for a very special reason, and that's because you're an author to an amazing book. Can you tell us about it?

00:02:06

Professor Scot Danforth: Oh, thank you for the compliment. It's called an Independent Man, Ed Roberts and the Fight for Disability Rights, and it is the first and only biography of Ed Roberts, the famous disability rights leader from the bigger years of the seventies and eighties. I guess.

00:02:32

Peta: Ed was fundamental in particularly American disabled rights, and I'm sure we'll get into it. I can't believe how things aren't documented correctly as far as the people that did have impact in disabled culture. What drew you to Ed's story and why did you think you were the right person to put this into a book and tell his story?

00:02:58

Professor Scot Danforth: I started small. He had a group in the late sixties, a group of activists at the University of California, Berkeley, all people with some kind of paralysis, and they were called the Rolling Quads. It could be pointed to as the beginning of the American disability rights movement. They fought a few different fights, and they went on to found what became the first independent living center in the United States, and now there's many, many more around the world. I looked and realized that no one had written a biography of Ed Roberts, and I thought to myself, well, I know him other than his family or his loved ones. I know him better than anybody, and maybe I better, you know. I felt some obligation, and it was a long, long journey. This took eight years, eight years of research and writing, interviewing people, archives. But am I the right person? I often wondered if I was the right person. One thing I'll tell you, I am not a person with a disability, and I have a son who has autism. I have a disability studies scholar. This is what I do for work. I'm an academic. But I often wondered, how can I understand this guy? How can I understand what he went through and how we lived and how we viewed the world. And I felt challenged by that, But I also I didn't want to back away from it. I wanted there to be a good biography of Ed Roberts so people could know these stories.

00:04:36

Peta: I'm really fascinated, particularly as a non discibled person. What drew you to academic research in and around disability.

00:04:46

Professor Scot Danforth: Early in my career I was in special education and honestly, and you'll chuckle at me, and I invite you to do that, I was a young person coming out of college and I thought, oh, I want to be helpful. I had that that helpfulness thing, which I don't want to completely make fun of, but it was a little it was a little too much. And after a while of working in public schools and working in a university, I started feeling like, special education is getting this wrong. This really isn't about what people can can't do and can do. This is political. This is not just about improving somebody's skills, I realized. So I switched over to disability studies and became someone who looks at the politics of disability and disability rights.

00:05:42

Peta: And as we all know, there's a marked difference between the medical model of disability and the social model of disability. And that's you may not have known that when you were starting to feel uneasy about special education, but that do you think that was an underlying element?

00:06:00

Professor Scot Danforth: Oh? Certainly, yes, yes, And in special education in the US, the split came between the people who were in favor of inclusive education and the people who were against it, and I was in favorite, so I was with the progressives. And right away some very smart people taught me about the medical model and the social model, and I thought, oh, I wish I had known about this earlier.

00:06:27

Peta: And that's why I think education in disability history is so important, and it's an area that I really am still learning about, and I still feel quite uncomfortable with my lack of knowledge and the amount of learning I still have to do, which is why I think your book is so important. So for those who don't know who Ed Roberts was, I know you mentioned in your introduction quickly, but why was he such a pivotal person in disability rights history in.

00:07:02

Professor Scot Danforth: The US and how much of the stories is based in the United States although he did work internationally. I'll say that he was all over the world and including Australia, but in the United States the movement was a civil rights movement for disabled citizens through the seventies and eighties primarily. But really continuing on this is not over. That's one of the lessons we learn and there were a series of pivotal figures who were leaders, people like Judy Human and Justin Dart and Ed Roberts, and there's many many more, and their names that people that people tend not to know. I can't. It amazes me that people don't know, at least in the US, don't know these people, but that I was just drawn to these figures, and then once I dove into Ed's life, it's hard not to be what a fascinating, ambitious, arrogant, brilliant, funny man just a oh I so I you know. He died in nineteen ninety five. I never met him, but I spent eight years hanging around with him, and those were eight wonderful years.

00:08:21

Peta: Early in your book you described that after he contracted polio fourteen, his doctor suggested to his parents that they should let him die. How do you think moments like that shaped him into the fighter he became.

00:08:39

Professor Scot Danforth: I think initially it shaped his mom. He was very much His prime teacher was his mother's own Zona. She lived over one hundred years old, only died within the last year. She was a very small, gentle, down to earthed woman who was just also tough as nails and She started fighting for him before he ever fight for himself. So she was his role model in teaching him, not just if he was going to get somewhere. I mean, he was opening doors for himself, but he very quickly realized he had to open doors for many, many people, and not just for himself. But she was his main teacher.

00:09:24

Peta: And obviously his mother really informed how he lived his life into the future and what was possible for him, because all too often I speak to people on this podcast and I can see how their parents have really shaped how they view themselves, either positively or negatively.

00:09:45

Professor Scot Danforth: Yeah, I think so. And he was, I mean, he was put in an incredible position where he contracted polio. This is in the mid nineteen fifties. He spent eighteen months as a teenager on polar the Awards kind of staring up with the lights because he really couldn't he couldn't move. He was sleeping in an iron lung. The iron lung is a giant steel can that breathes for you. He knew he was losing his body, so to speak, or losing control of his body. But the bigger issue he felt was he needed to figure out a way to have a life. He needed to figure out a way to be a social being and a real person in the world. There was no one he could look at who was successful, who was out and about. He never saw anyone. There was no one he could point to. He had to in his own mind develop and Ed Roberts character who was able and competent and assertive and could live.

00:10:56

Peta: Given his life in the iron lung faciet much a long period of time. And you're the perfect person to ask his you know, I would say, you're an expert on ed wife Scott. But did he struggle with medical trauma? Given the horrendous ablism he did face.

00:11:15

Professor Scot Danforth: I think that his experiences, the primary experience that hit him was the isolation to be a teenager at that point in your life. When you think of what teenagers want to be doing, they want to be connecting with their friends and having fun and dating, and he wanted to play sports. He did none of that, and.

00:11:38

Peta: He was.

00:11:41

Professor Scot Danforth: He was in a place where people were giving him compliments for having a bowel movement. I mean, it was just a strange, hygienic space. And I think the rest of his life he wanted to stay with people. He went out of his way to always have people around him. He could not stand that kind of isolation.

00:12:02

Peta: Again, yeah, it makes total sense. It must have been, and I guess also it's a generational thing to talk about medical trauma. Possibly when he was alive, it wasn't a concept that he might have been familiar with, because I think it's only now that we look back at what happened to us, particularly for myself in my childhood, that we have a name and a feeling around those things. But often, you know, because there was a lack of freedom in communication, like there was no social media, as you say, there was no one visibly there for Ed to look to to see what his life could be like that. Did you think he just got on with life.

00:12:49

Professor Scot Danforth: I think he had to invent a life. He had to invent a life, and this was not an overnight thing. I'll give an example when he did come home from the hospital and he went to high school at home for a while, they set up a two way audio set up with his high school and he could go from his living room. But after a little while his mother's Zoner realized if Ed stayed in the house, she was going to be stuck in the house. Taking care of him for the rest of her life. And she basically said, you're going to the high school, and he did not want to go. He was so afraid of people staring at him. He was just so and he was right. He got there and they stared at him. But later he would tell the story. You know, he told a lot of stories in his speeches. He made speeches all over the world, and he would basically say, oh, I decided that they weren't staring at me because I was a man with a disability and a wheelchair. They were staring at me because I was a star. Essentially, he didn't accept the stigma if they stared. He viewed it as what they were doing. It wasn't about him, and that took him time to train himself to be that way.

00:14:03

Peta: It really surprises me, as you say, he was so isolated when he was in the hospital and just wanted to be around people, but then he was hesitant to attend high school.

00:14:15

Professor Scot Danforth: The experience I think for him, and this was true of a lot of people with polio in those days. They went into the hospital as one person and they came out as a different one. He lost the Roberts. He knew, and he came out a different one, and that new one he knew was not socially acceptable.

00:14:34

Peta: And as you say, he did attend class through a telephone, which I think is an amazing feat in technology. Like, you know, I think we can take technology for granted, but even back then that must have been an amazing feat. How did that get put into place in Ed's life? Like, were there a medical team supporting him and you know, teachers supporting his education or was it really down to his mother advocating for himself to put these things in place.

00:15:07

Professor Scot Danforth: I mean, there were helpful people. There was a local a local women's club, and the local Sears Roebuck store that donated you know, the equipment and installed it. Even his iron lung iro lungs were incredibly expensive, the iron lung donated by the March of Dimes.

00:15:28

Peta: Do you think the fact that because obviously he didn't attend school straight away, he was using the telephone for a while. Do you think that being or you know, being attending school but being physically absent, shaped the way he viewed access and belonging later in love.

00:15:48

Professor Scot Danforth: I think all of his experiences from the hospital on of being excluded of being isolated, of being an outsider. His entire life for people like him not to be outsiders. And he was very pushy and very forceful if there was anything. There were people that complained that he was too pushy, that he was he was demanding. He would when he was famous, he would travel and go to hotels and oh my, the scenes he caused. He loved to cause a scene because the accessibility of the room wasn't very good and he'd have people racing around all over the place, and his personal attendance would watch because they had seen it before and they knew how much he loved it. He loved making them squirm. He loved making them.

00:16:40

Peta: Uncomfortable, asserting his power.

00:16:44

Professor Scot Danforth: Oh yes, yes, And he did it for himself because he was full of himself in a certain way. But he always felt like he was the first one through the door, and he was preparing the world for other people. He was teaching, teaching lessons.

00:16:58

Peta: So after he did, we'd start to attend school in person. As he was starting to try and graduate high school. I understand that officials withheld his high school diploma. Can you talk to me about that?

00:17:13

Professor Scot Danforth: Oh yes, this is so, this is the first fight for Ed, and it's really his mother who took the lead. His high school, the school district told him that he had not completed all all of the graduation requirements, that he still needed to do drivers education and physical education, and his mother was just shocked. She was how could they, what do they? Who do they think? So she talked to a number of administrators, but then finally the district said, we'll send an assistant superintendent to your home to meet with you. And she thought, great, how could anyone seeing Ed's head Polkata, that iron lung think that he's going to, you know, go to gym class. But now the man stared at in the eyes and said, you don't want a cheap diploma, do you? I mean, he told Ed that he he had to go to these two classes. And Zona got her hands on this man and pushed him out the front door.

00:18:20

Peta: That level of ableism is laughable and ridiculous. I mean, why do you think those people in power were so threatened by the idea of someone like Ed wanting to achieve education?

00:18:35

Professor Scot Danforth: To these administraties, I don't think they were threatened. I think they thought that Ed's mother was crazy. In their mind. It didn't matter if Ed graduated from high school. He wasn't going to college, he wasn't going to work, he wasn't going to have a family and an adult life. There was no role for him in the adult world. His mother was tilting at windmills. She was a fool.

00:19:04

Peta: So Ed did graduate high school because he attended the University of Berkeley. But initially the university refused him as well, and again trigger warning that they said, they've tried cripples before and it didn't work. Why do you think Ed chose to fight to attend that university considering those were the attitudes that he was going to be up against.

00:19:30

Professor Scot Danforth: I think he had a real team around him. He had his mother, he had some people. By that point, he had gone to the local in the United States we called a community college, which is a small public college that doesn't have any housing or dormitories, and so you can go for your first two years of college. He went to the local community college. He had a mentor, a woman named jean Worth, who Ed and jean they bonded. Jeanne was a woman who, at age say thirteen, was already well over six feet tall, so she knew the experience of having people stare at you, of being the one with the body they don't expect. And so he had many, many people around him telling him you can do this, you can make it, you can make it happen, and he believed them.

00:20:22

Peta: If you could categorize his approach to advocacy, how would you do that, Scott?

00:20:28

Professor Scot Danforth: I think in terms of tactics, I mean the general tactics of those activists in Berkeley. They were the tradition was taking it to the street and hitting the opposition in the teeth. They were they they learned their craft from Vietnam War protesters. They were, you know, vocal, But he learned His approach was try everything, do everything at once. He loved to go and talk to legislators. He loved all of the halls of power and all of the power people, powerful people, and he wanted to influence them. He loved working on legislation and laws. But if I had to give his mentality and his approach, his approach was one of fighting joyfully. He knew he was going to lose most of the time. He knew the most fights you lose, or even if you win, you've only gained a few inches. You can't. You can't celebrate long. There's going to be another fight tomorrow, and even the few inches you just gained you could lose. So you show up and you fight again. You rally your friends, and you better have some fun. The other thing I think they found in Berkeley that he was with a whole group of activists was was the bonds and the friendship. They they worked together, they partied together, They they really had a team, and I think that was so opposite to the kinds of isolation that a lot of people experience. Even when they had just a tiny little organization the beginning of the Independent Living Center, ED was already telling people that they were starting a revolution.

00:22:17

Peta: So they were called the Rolling Quads, as you said earlier before the student group, which I just love, like I just wish I could wave a magic wand and be there and watch them and do what they did, because even things like using sledgehammers to smash out curb cuts or lack of curb cuts, I should say at night, really shows the creativity but also the urgency in their activism.

00:22:44

Professor Scot Danforth: Yeah. Yeah, that was interesting because there were so many myths I ran into about ED, and that one was all debated did it really happen? Did Ed and his friends go out at night, you know, with the buckets of pavement and some you know, pitchforks, And from what I could tell they did it was great hijinks in the middle of the night to go do something like that, I mean the real Actually, as a student, Ed became good friends with one of the deans and he was put on all these committees for architectural access. So when they made new buildings, Ed Roberts and his friend who worked with him, John Hessler, were advising the university, these two students about access. And this is in the nineteen sixties.

00:23:35

Peta: Why do you think they focused on cob cuts as much as they did?

00:23:40

Professor Scot Danforth: So many of the early disability rights leaders in the United States used wheelchairs. So if you think of all, and I'm sure your podcast you're interested in the wide range the diversity of what we call disability, the leaders at that time mostly were people who I polio or people who had paralysis from an accident, and so they were wheelchair users. And to get around town was everything. Just just to be able to go to the restaurant, to go to the bar, to go where the other young people went. Of course, when they got there they found those places weren't accessible, but at least they got there and everyone stared at them. But that's what they wanted. They wanted to go and get to those places.

00:24:27

Peta: One of the things that rings true regardless of where you live in the world, and Ed said this way back in the day, was one of the number one issues that we still face is the attitudes towards us. Do you think attitudes have shifted or do you think they're still stuck in the same frustrating ways as back length.

00:24:54

Professor Scot Danforth: I would say they have shifted, but far less than people think, far less than I think. Many Americans, and I don't know how this is in Australia think, oh, we have some good laws. We have a anti discrimination law, the Americans with Disabilities Act. We have pretty good, pretty good physical access, not great, but they you know, I watch I'm a college professor. I watched the students with disabilities trying to get their accommodations and work with professors on campus. I'm astounded to hear the stories my students tell me of things that professors will tell them. You know, they'll they'll be told that because you're you're deaf or blind, that you shouldn't be taking a biology class. Why this is a hard class. It's like, well, I'm a pretty good student, you know, But they, oh, so, yes, there's still so far to go.

00:25:57

Peta: As sitting here as a disability advocate today and those who are allies, those who are disability advocates themselves listening to this episode, what do you think we can learn from the strategies that Ed used that we might be able to employ today.

00:26:13

Professor Scot Danforth: Don't do it alone. Whatever you're doing, don't do it alone. I think there has to be unity. There have to be teams and groups working, and then that's for emotions to keep us together. That people were empowered by one another alone, it's almost I think it's almost impossible.

00:26:35

Peta: What do you think Ed was most proud of as far as what he achieved in disability advocacy, Like we've spoken about his time at Berkeley, but maybe even after.

00:26:44

Professor Scot Danforth: That, I think he was very proud of the work that he and others did to create Disabled People's International, which was the first international activist group that became important. They really influenced the UN. The United Nations have been very very forward in their policies and that's affected the whole world. That's incredible stuff. I think that for Ed, the the spread of the independent living centers in the United States, we have over four hundred government funded independent living centers. If someone with a disability moves from one place to another and they wonder, how am I going to find, you know, an accessible apartment, how how what's the local transportation situation, there's there are people, there are disabled people in an office and they can help. And I think that's his He might feel like that was his biggest accomplishment.

00:27:45

Peta: And what for you, as an expert in Ed's life, what do you think is his legacy?

00:27:52

Professor Scot Danforth: I think to save himself, he had to invent a kind of disabled person, a persona that was not what everyone else thought a person with the disability was everyone viewed at that time, if you had a disability, you were weak, you were sick, you were out of the game. He had to invent a persona that was the opposite and make it believable. He did it, and he lived it. I think it could lose fight after fight after fight and still think he was about to win the next one.

00:28:29

Peta: What do you think one fight that he wished he won?

00:28:33

Professor Scot Danforth: Oh, boy. So I'll say one. So in the United States, I mentioned that that we have this antidiscrimination law passed to nineteen ninety called the ADA, the Americans with Disabilities Act, that basically outlaws a wide range of discriminations against people with disabilities. When that happened, he wasn't the leader. But the leader was just a Dart junior who was Ed's friend and actually Ed and Judy taught Justin about disability rights. So they were thrilled. They were thrilled at what happened, and but Ed was on the outs. He was not. It was a conservative Republican administration and he was this old school left wing hippie from Berkeley.

00:29:20

Speaker 3: He was.

00:29:22

Professor Scot Danforth: Not the guy to even get into the room. I think he felt somewhat left out by not being there for what was probably the biggest, the biggest game, But he understood, he understood that he completely He and others set the stage. They they created the situation that allowed that to happen. They invented the game that Justin Dart and others won. So I think he felt satisfied with that.

00:29:49

Peta: After listening to this episode, and maybe people listening has never considered about considered about disability history. What are the other figures in disability history that we should be aware of.

00:30:03

Professor Scot Danforth: I mean, I've mentioned a couple from Judy Human and Justin Dart Junior. Franklin Delano Roosevelt was fascinating. He was an earlier figure. He was President of the United States during the Great Depression. He was a man who had polio and was disabled, paralyzed and used a wheelchair. He hid his disability from the public. He had to fool them. There was a very good book by a man named Hugh Gallagher called The Splendid Deception, and he had to fool people. It really showed what a disabled leader of a different era had to do to be a leader. He had to campaign in ways that that made it seem like he didn't enter the room in a wheelchair. But at the same time, I think in a lot of ways his spirit he would have been there. He was. He had an Ed Roberts kind of spirit. It was just a different generation. You couldn't you couldn't walk with crutches and be elected president.

00:31:15

Peta: And I truly hope the same figure in Australia. But I truly hope that you have a female president. But also a disabled president very soon, because that would be amazing.

00:31:28

Professor Scot Danforth: You were shooting high. We're just trying to get one who's not mean.

00:31:35

Peta: You have to have hoped right. Maybe not in this generation, but I truly hope.

00:31:41

Professor Scot Danforth: Yes, yes we will. I don't know when, maybe in our lifetime.

00:31:47

Speaker 3: Thank you so much for listening to this episode of the I Can't Stand Podcast. If you enjoyed today's conversation, the best way you can support the show is by sharing it with a friend or post about it on social media, and if you have a moment, leaving a rating and review helps more people find these stories.

00:32:08

Peta: Don't forget. You can always send me an email I Can't Stand Podcast at gmail dot com, or you can follow me.

00:32:15

Peta: Over on Instagram at Peterhook. I'll see you next week.

00:32:22

Peta: I would like to respectfully acknowledge the wondery and bunner wrong people of the Call and nation of which I record the podcast today, and I pay my respects to both elders past and present, along with and especially to those in the First Nation's communities who are disabled themselves.