ADRIENNE LAUBY: Welcome to Pushing Limits, KPFA’s program by, for, and about people with disabilities. I’m Adrienne Lauby.
Local independent scholar Corbett O’Toole has first-hand experience with the creation of the west coast Independent Living Movement. She brings those early days to life in her new book Fading Scars: My Queer Disability History. And she does much more. From violence and racism to crip dancing and athletics, O’Toole’s analysis of disability is often surprising and always illuminating.
Last month, O’Toole did some readings to support the release of her book and publicize her work with Autonomous Press, a new publishing venue for people with disabilities. And, today, we’re bringing you excerpts from the November 11th event at the Ed Roberts Campus in Berkeley, California.
Here’s a bit of O’Toole’s history of the ground-breaking 504 sit-in, with its often-disappeared story of Black Panther support.
Corbett O’Toole. Photo by Karen Nakamura.
CORBETT O’TOOLE: I was surprised when two non-disabled men from the Panthers arrived a few days into the protest and asked permission at our daily meeting to feed our entire group dinner for the duration of the sit in. Actually, I was completely and totally shocked.
ADRIENNE LAUBY: We’ll hear the full story of that in a few minutes plus a story of racism from those early days. But first, here’s Corbett O’Toole talking about writing for people who don’t like to read because of their disabilities. She wanted her book to be accessible to these people as well as enjoyable for people who love to read. Because this problem is so rarely considered, we wanted you to hear her solutions. There is a partial transcript of this program on our website at PushingLimits.i941.net.
Here’s Corbett O’Toole.
CORBETT O’TOOLE: As most of you know, I have a kid and she has a very severe learning disability. And, one of the things I was really aware of is how much she hated to read. How much she loved to learn and how much she hated to read.
I’m also friends with people like T.M Ellis and Nancy Ward, who are leaders in the intellectual disability communities, and they also hate to read. And, I wanted a book where the information I had could be passed on to people who hate to read, but in a way that was accessible to people that liked to read and people who hated to read.
One of the things I realized is that I did not have very good models for how to make an adult non-fiction text accessible to people who don’t like to read. Because, typically what happens is people who don’t like to read get shorter books with fewer words and bigger text. And, you know there’s a whole genre of high-interest low-vocabulary books—but that’s not what this book was.
People had told me that what made books hard for them were that it had too much jargon. That they’d go along, start reading a sentence and suddenly there was a buzzword, like intersectionality. And, they couldn’t figure it out. And, often its not just a word that if you look up in the dictionary it makes sense, but it had a particular meaning in a particular context, and you hadda know a lot of stuff to go there.
They also were saying that it was very hard when you read text to have a handle on structure. So, that if I had a structure in one chapter it was really important to have that same structure across all of the essays. And, lastly, it’s really hard to retrieve facts.
People would read a chapter in a book or an essay … someone would say to them, ‘well when did that happen?’ and it’s like when they were reading they weren’t cataloguing ‘when’ and they had a hard time going back and finding it.
So what I did was, I built a bunch of stuff into the book.
Cover photography & model: Chun-Shan (Sandie) Ye
First of all I made a commitment to only write in plain language and that was a really important decision for me. And, if I had a choice of words I always chose the word that was most likely to appear in conversation. So, I didn’t stay away, necessarily, from words that were hard to read as much as I stayed away from words that only exist in text context and not in conversation contexts.
So that was one of the things and some of the guidance for that came from an organization called Self-Advocates Becoming Empowered, which is a group of people with intellectual disabilities, who have some guidelines for how to do ‘plain language’ which is also called ‘accessible language.’
Secondly, I made a commitment to do only stand-alone essays so, if people committed to reading, they only had to read those twenty pages. They didn’t have to read a whole book and remember a thread from fifty pages ago that was going to appear on this page.
Thirdly, I decided to write in stories so I wrote in a conversational voice.
I made a conscious choice — and this is a very unusual choice for a book that does history and also wants to talk to an academic audience – that I almost exclusively use only on-line free sources. So most of us, including myself, are not affiliated with places that give us access to journals and stuff that are behind paid firewalls, or any kind of firewalls. And, I wanted the people who wanted to read the book and wanted to think about this, and really wanted to challenge me or do the work or follow a thread to have everything available that I had without ever leaving their home. And without… as long as they had internet access either at their home or the library they could essentially recreate and find everything I had found, and then go on from there.
So those were some of the specific choices that I made that I wanted to do about language.
People told me that having a structure really helped them follow information more easily so every chapter has a title. The title is followed by a short quotation.
And, here, I want to honor Cheryl Marie Wade who really sat very heavily on my shoulders during the writing of this book and kept reminding me that poetry is a voice that some people hear best, and that I damn well better put some poetry in there or she was going to come back and make my life hell.
I then follow that with a one or two paragraph summary and in the summary I was extremely careful about my word choices. The summary is the most accessible language in the whole book and, basically, the summary tells you everything you’re going to read in the whole essay but you only have to read a paragraph or two to know it. And, that was because a lot of people have educated me about how much energy it takes to read when reading is hard.
Then you just have the regular essay.
I debated about footnotes versus end notes and I talked to people who don’t like to read and they said that footnotes were much easier—having the information on the same page was a much easier way to go. So, we went with footnotes and then, as I said, if I had a source that I didn’t actually use in a direct footnote, we put it in the on-line bibliography.
I wanted to have a little section called, ‘Just The Facts, Ma’am’ that basically had a retrieval of just three pertinent facts, you know… the 504 Chapter – When did it happen? Who was involved? What did it result in?
I have a very short resource section at the end of each chapter. Again, it’s just three resources so if you went through this chapter, you looked at all the footnotes, you looked at on-line, there’s a hundred resources and you don’t know where to go… And, you want to think about this essay, here’s the three things you really want to know that will get you the most information the quickest.
I would love to hear from other people about other ideas people have used but that’s what I did.
Also, one of the decisions I made, which is not a big deal in this room but it’s a huge deal in the world, is every single person in the book or in a footnote, if I named you, I gave you one of three designations: ‘disabled,’ ‘nondisabled,’ ‘unknown.’ And I asked people what designation was appropriate to them when I could reach them. If I didn’t know that, I used what people had stated publicly even if I knew privately that it was different information. Whatever they had said publicly is what I deferred to.
There is a lot of resistance outside our communities about saying that but I really struggle with looking at material and watching us eradicate ourselves. Which is how I personally see it. You know we write about each other and we don’t say who’s disabled and who’s not. Fifty years from now, the cultural context will disappear and we will become invisible. And I don’t think we should be invisible. I think we should be kicking ass a hundred years from now. So this is just my attempt to kick ass. And, I call this kind of ‘cripping the text.’
ADRIENNE LAUBY: You’re tuned to Pushing Limits on KPFA. Today we’re hearing excerpts from Corbett Joan O’Toole’s reading from her book Fading Scars: My Queer Disability History.
The Disability Rights Movement has inspired people around the world. (photo credit below)
CORBETT O’TOOLE: I know that some of you know this history really well. And for others it may be new information.
In 1977 over a hundred disability rights activists took over the Federal Building in San Francisco. They were protesting the 4 year delay in implementing Section 504. The protest was historic both in size and in the fact that disabled people were the protesters. They occupied the Federal Building for 28 days and emerged victorious.
I was one of those protesters. Here is a little bit about that protest from the essay “Flexing Power: the San Francisco 504 Sit-in.” For this short reading I omitted some sentences and moved a few paragraphs around:
Many people were surprised that 150 people showed up with the intention of staying as long as necessary, even if it meant sleeping on cold office floors without any support structure in place. To be honest, most people who showed up had very little idea of why we were protesting, since we’d never had a civil rights law before and almost none of us understood the legislative process involved. What we did understand was that Judy Heumann, Kitty Cone and other national organizational leaders had been working on this issue for four years and had decided it was time to put our collective feet down.
So off we trudged, all 150 of us, with huge backpacks. We were trying to hide our food and medical supplies as well as sneak in some sleeping bags. I’m really not sure why they let so many of us in for the meeting, but the security staff did not seem to communicate with their chief administrative staff, so by the time anyone figured out there was a problem we were all inside and up on the fourth floor. A few people went into Maldonado’s office for the meeting while everybody else stayed outside in the hallways. The purpose of that meeting was not to get the regulations signed, since the Regional Director, Maldonado, could not accomplish that. The purpose was to send a message to HEW Secretary Califano.
Before too long, Maldonado and his secretary had left because of the protestors, his three-room office was empty, and we were making it our headquarters. Somebody brought in a very large empty cardboard box (from a refrigerator), and we duct-taped that box around the air conditioning unit to create a refrigerated space for medications. We set up a small medical center next to the air conditioner.
The HEW offices were only three rooms on an entire floor of offices. We soon found a large meeting room, which became the center for all of our meetings. Not everyone fit inside, so we created informal groups for easier communication. All the groups were connected through their previously established social networks. Some people were tied together by similar disabilities (such as Deaf), others through their geography (such as San Francisco), and others through identities (such as queers). Representatives from each social group would attend the meetings. Then we would take a break for everyone to discuss the issues in their informal groups, and we would come back together to make final decisions. No decisions were made unilaterally or by a small committee. All decisions came before everyone who was a part of the protest. For efficiency we created committees for communication, food, safety, and other issues. At our daily meetings the representatives from those committees would bring all decisions that needed to be made to the whole group.
I’m spending time describing our process because it is at the heart of the success of the sit-in. Every single person believed that their voice would be heard and their opinion attended to, even if it went against the trend of the discussion. Making decisions this way takes time and a commitment to the process. Luckily we had lots of time. So by the time the FBI ratcheted up their efforts to eject us, our pattern of trusting our communal decision-making process prevented to them from succeeding in their divide-and-conquer strategy.
The occupation of the building lasted 28 days. For the first week the media ignored us. We believed that this was at the behest of the FBI. Overall that was our least comfortable week, since we only had what we had brought into the building with us. By the second week the tide had turned, and the media started covering us as a civil rights protest. By the third week we sent representatives to Washington DC. And by the fourth week we were planning on our triumphant exit from the federal building.
Although most people think about the sit-in as exclusively about the people inside the building, the people outside the building were critical in ensuring the success of the sit-in. Organizers erected a stage, got a sound system, and every single day stayed outside the building so that the public and knew what was going on. They also brought food and medical supplies and delivered them to the people inside. But it was their presence outside, within the sight lines of San Francisco city hall, the main library, and major public transit lines that kept our struggle in the eyes of the public. A little known fact is that some people who came to support us outside the building later decided to join us inside the building.
During the first week the FBI worked hard to isolate us.
1977 was well before the advent of personal computers, cell phones, and any digital technology; it was even before the age of the fax machine. So when the FBI shut off the pay phones, we were in communication isolation. Being resourceful, we soon figured out a way around it. Because our coalition included people with a wide variety of disabilities and allies such as attendants and sign language interpreters, we had full strength in numbers and many communication options. The Deaf people suggested that we could easily use sign language to overcome the communication barrier.
The people outside the building wanted daily updates of what was happening inside the building, and we inside the building needed to know what was happening in the media outside. The people outside would get on the stage with a microphone and the ever-present sign language interpreters, and would call out to us on the fourth floor asking for an update. Someone from the communications committee would formulate an answer and one of the deaf folks, usually Olin Fortney or Steve McClelland, would sit on the deep granite windowsill and sign our answers to the interpreter on the stage who would speak them into the microphone. It was an elegant solution that came directly from disability experience and completely confounded the FBI in its simplicity and its effectiveness. Once we established this simple and brilliant communication system we used it every day.
With the communication challenge addressed, we turned to other basic needs
Setting up an encampment for a 150 disabled people in a federal office building was a major challenge. For the first day or so, a few people had unrestricted access and could come and go from the building. They would go out and solicit donations for food and bring it back to rest. I’ve seen some historical accounts that talk about us getting food from Safeway and McDonald’s. But my memory of that time was that those businesses believed they were donating in the vein of “help the handicapped” and not supporting civil disobedience. As soon the protest hit the news, those sources of food dried up, a crisis, which could have potentially ended the protest before it really began.
The solution for our food needs came from an unexpected source: the Black Panther Party. Headquartered in Oakland, the Panthers ran an extensive network of community supports including a health clinic, a school, and a free kitchen. Two members of the Black Panther Party, Brad Lomax and Chuck Jackson (his attendant), were participating in the sit in. Brad used a wheelchair and had been working to build connections between the Berkeley Center for Independent Living and the Black Panther Party in Oakland. Even with the full support1 of the Panthers in making this connection, he had limited success, mostly due to a lack of commitment by CIL. While there were always disabled people of color hanging around CIL, they were rarely hired as staff. Brad’s work to bring disability services to the poorer communities of Oakland was largely done by him, with the support of the Panthers.
I was surprised when two non-disabled men from the Panthers arrived a few days into the protest and asked permission at our daily meeting to feed our entire group dinner for the duration of the sit in. Actually I was completely and totally shocked. My knowledge of the Panthers at that time was completely limited to the white media stories of them as dangerous. After the meeting I turned to one of the men and asked him why the Panthers were contributing this considerable resource to support a group of people that had consistently ignored Oakland’s disabled people of color. He told me there were two reasons, both rooted deeply in understanding the struggle for civil rights in America, neither of which I, a naïve white girl, understood. He told me that Brad and Chuck’s commitment to the sit-in automatically guaranteed that the Panthers would support them.
“Okay,” I said, “I understand why you would feed Brad and Chuck, but I have no idea why you would feed the rest of us.” He turned to me and said, “We support you because you’re asking America to change, to treat you like human beings, like you belong. We always support people fighting for their rights.”
And support us they did. Every single night the Panthers showed up with a hot meal.5 They never asked us for money, which was a good thing since we didn’t have any. They showed us what being an ally could be. We would never have succeeded without them. They are a critical part of disability history and yet their story is almost never told.
This is just MY version of our community’s history.
You have your own. We need ALL our histories to be preserved.
WRITE/VIDEO YOUR HISTORY – you can send it to Autonomous Press or self-publish or put it all online – but whatever you do – SAVE YOUR HISTORY
SEND YOUR MATERIALS TO AN ARCHIVE They want it all – emails, letters, programs from events, photographs and anything else you’ve got.
There are a number of archives looking for material from folks in disability communities RIGHT NOW. David di Lorenzo from the Bancroft Library at UC Berkeley is desperately looking for YOUR materials to add to their collection.
PLEASE do not LET OUR HISTORIES die with us. PRESERVE OUR HISTORIES so future generations know what we did. If we don’t do it, no one will.
ADRIENNE LAUBY: You’re tuned to Pushing Limits on KPFA. Today we’re hearing excerpts from Corbett Joan O’Toole’s reading from her book Fading Scars: My Queer Disability History just out from Autonomous Press. After O’Toole’s reading, much of the discussion centered on the politics of race in the early disability movement. Here’s another story from O’Toole’s essay “Race and Disability:”
CORBETT O’TOOLE: I really struggled with how to talk about race. You know, I’m a white girl who was raised in an all white environment, went all white colleges, was part of a movement where we – I — just very unconsciously supported and hung out with the other white people. And when I wrote the book I really wanted just try to talk about that. And, I think I did it fairly awkwardly, and with a lot of love and helpful editing from Naomi Ortiz (but you know all the mistakes are mine.)
But one of the things that was really, really striking to me was going back and reading Johnnie Lacy’s oral history because Johnnie Lacy was an African American woman, that I remember when she first was hired at CIL [the Berkeley Center for Independent Living]. And, I remember all of us looking at her and going, who the hell are you? And, why are you here and why do you think that you should be a boss?
I mean there was like that was just the kind of the attitude that a lot of us had about when she can came on. And, it soon became apparent that she had more experience working than any of us in the entire agency. She had directed larger projects, she had managed more people and she had done much more complicated work than we were doing, just kinda sitting on our asses saying, yay, yay, yay! We’re advocates.
But, what was really powerful to me in reading her oral history was that Johnnie Lacy was on the UC Berkeley campus during the entire rolling quad/ Ed Roberts time. At a time when wheelchair repair people were like the social secretaries of the universe. If you got your chair repaired, you were sitting there with five other people who were all hanging out. And, everybody knew everybody. So, she was getting the wheelchair repaired there.
Then when CIL started, it had both a van repair shop and a wheelchair repair shop. She was getting both her van fixed there and her wheelchair fixed there. Johnnie Lacy was a large woman, used a power wheelchair and was a dark-skinned African-American woman, so it was pretty clear when she was around — because CIL was pretty pale in a lot of ways. So it really struck me when Johnny said, that the way she first heard about the job that she ultimately took at CIL was she was shopping at Hilltop Mall.
And Judy Huemann was shopping at Hilltop Mall. Judy Huemann is a white woman who was the assistant director, I believe it’s the right title, of the Center for Independent Living in Berkeley at the time. And, Judy saw her shopping and went up to her and said, hey, you know, I’ve got this center and we’re looking for some people of color ‘cause we have to get some people color for our grants [audience groans].
You can read the oral history. It’s in the Bancroft collection. I included a fair amount of that text from Johnnie in my race chapter.
And what struck me, and I don’t know that I adequately conveyed it in the book, was not the CIL was so slow about hiring a person of color in a management position. But, the fact that in those days it was impossible to not be noticed. I mean, we would drive down the street and go, oh, that’s Greg’s van… oh, that’s Mary’s van… There goes Charlie, I guess he went to the movies tonight…
Everybody knew everybody. There was no hiding. So, for Johnny who had been using the services, hanging out with people that we think of as the traditional movers and shakers of our movement. She was around. In those days, wheelchairs broke a lot so she would have been around (and vans broke a lot), so we would’ve seen her at least four or five or six times a year in one of these environments. And, for her to basically find out about jobs because Judy Huemann walked up to her in the mall as a stranger– I mean…
Now, we lucked out. Johnnie Lacy happened to be, have run, a number of successful programs under the old, was it called? War on Poverty? Is that the right term from the 60s? That was really for me what I found the most appalling about the piece of history.
So, yes, lots of people of color were around but I never saw us treat the majority of them as people that were going to be our bosses or even necessarily our coworkers. Maybe our secretaries or maybe our van drivers or maybe our repair people.
ADRIENNE LAUBY: This story and much more are part of Corbett O’Toole’s book, which is available in all the usual places. In particular, look for her publisher, Autonomous Press at autpress (a-u-t press).com. You can find more essays at her website at CorbettOToole.com. This is Adrienne Lauby. We have links to these websites and, I’m thrilled to say, a partial transcript of this program on our website at PushingLimits.i941.net.
Thanks to Corbett O’Toole for the transcription, Sheela Gunn-Cushman and Shelley Berman for editing, our ever-alert engineer Erica Bridgeman, Josh Elwood and the entire Pushing Limits gang.
Pushing Limits is produced by a collective of people with disabilities. Our website is PushingLimits.i941.net and we’re on Facebook as Pushing Limits Radio.
Next week at this time tune in for Education Today, with Kitty Kelly Epstein (prn Ep-st-eye-n). We’ll see you again after the winter fund drive.