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ERC TALK NOTES

 

SLIDE: OPENING IMAGE

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THANK YOU to the Longmore Institute at San Francisco State University for organizing and hosting this evening. Special thanks to Cathy Kudlick, Emily BET-Ih-KITS and Babette Schmitt for doing all the hard work to make this happen.

 

And THANK YOU for coming out tonight.

 

 

For me, tonight is having the conversation with all of you in person – that I was having with all of you in my head as I was writing the book.

 

SLIDE: FADING SCARS COVER

 

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I drew on the stories you’ve told, the insights you’ve shared, and most of all the ways that you have challenged my assumptions and opinions.
This book is far from perfect – but it does capture a snapshot of my thinking at the time about many different topics – disability history, the role of disability identity, parenting, and sports. I got a chance to write about some of the people who influenced me a lot, such as Kitty Cone.

 

I decided to focus tonight’s talk on telling you some of the ‘behind the scenes’ stuff involved in writing this book.

 

And I will end by urging YOU to WRITE YOUR BOOK – and – DONATE YOUR LIFE’s MATERIALS to an ARCHIVE

 

We need this history. If we do not save it, then it will disappear with us.

 

PLEASE DO NOT LET this IMPORTANT piece of American History disappear.

 

This talk is in 3 parts:

First – I talk about WHY I wrote this book (and a little bit about my writing process)

 

Second – I talk about HOW I made this book accessible to people who hate to read

 

And Third – I read a little bit from the 504 chapter

 

Ok so let’s begin

 

 

 

 

WHY I WROTE THIS BOOK

(hint: someone made me do it)

 

 

SLIDE: IBBY

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This is Ibby Grace. She had an idea. She wanted to create a publishing house – which would be called Autonomous Press – and she needed the first books to be ones that people might want to buy. So in June 2015 she asked me to write a book and have it ready for sale by June 2016 at the Autonomous Press launch party. Knowing NOTHING about writing a book or working with editors or the printing deadlines, I said OK. I mean, look at the smile, who would say no to her? Pretty much no one says no to her.

 

 

 

 

SLIDE: Get an idea

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This is how it’s supposed to work – get an idea,

 

 

SLIDE: Spend hours writing

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spend hours writing and editing the idea –

 

 

SLIDE: book is created

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then YAHOO – a book is created and published –

 

 

SLIDE: share with friends

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then you get to share it with friends.

 

 

But that is definitely NOT how it was for me.

 

 

 

 

SLIDE:  lounge chair

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First I figured – I have a year – so I took the summer off.

 

 

SLIDE: desk / paper airplanes

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Then I figured as long as I am daydreaming about the book, that’s ok.

 

 

 

SLIDE: Blah Blah

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Then when I started actually writing, it was all garbage. It seems that my process is to write many many pages of personal angst before I write anything even vaguely useful

 

 

 

SLIDE:  face on desk

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Then I realized that I had ABSOLUTELY NO IDEA what I was doing. Which was a very humbling realization.

 

SLIDE:  losing my mind

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Then absolute panic set in. I would hunch over the computer and pray for inspiration. Like the person in this photo, my insides were screaming “I’m losing my mind and nobody cares!”

Because being a writer is glamorous – right?

How hard can it be to sit around and write some stuff down – right?

 

 

SLIDE: crying/begging

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Finally I realized that there was absolutely NO WAY I could write this book.

 

I failed.

 

I would take whatever embarrassment came with failing.

 

 

 

 

SLIDE: SMILING IBBY

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So in early December I wrote to Ibby – yes that Ibby – the one with the smiling face – and I said

 

Gee I am soooo sorry. But this book is not coming together. I’m afraid that I won’t be able to meet your deadline. Please forgive me.

 

But I will gladly have it ready for your second round of books.

 

Now to be honest, this last part was a total lie. I had no hope that the next time would be any better. But still that’s what I said.

 

 

 

SLIDE: IBBY — NOPE

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And she looked at me with those kind  eyes and said:

 

Too bad.

 

You promised,

 

We planned our book launch around you getting your book done.

 

The other two books, both being written by Autistic people, are meeting the deadline.

 

You don’t have a choice.

 

We must have your book done on schedule.

 

I was screwed.

 

 

SLIDE – FADING SCARS COVER

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So I put on my big girl panties and hunkered down and wrote the book.

 

SLIDE: AUTONOMOUS PRESS LOGO PAGE

AP FULL logo

First I want to acknowledge that none of this could have happened without the extraordinary freedom given me buy autonomous press.

 

Which is a worker owned Business committed to publishing works by disabled people, Primarily marginalized guided stable people.

 

SLIDE: AUT PRESS BOOK COVERS

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We typically publish 3 books at a time. So when my book came out, it joined Typed Words, Loud Voices and Defiant.

 

TYPED WORDS, LOUD VOICES is written by people who type to talk – either all the time or some of the time.

DEFIANT is a brilliant novel that shows us what one Autistic person might be thinking.

 

Just last week we published

 

THE REAL EXPERTS: READINGS FOR PARENTS OF AUTISTIC CHILDREN

This book, written by parents and by Autistic adults, passes on the knowledge of Autistic adults and shares important survival strategies for Autistic children.

 

 

 

 

SLIDE: CHALLENGES IN CREATING ACCESS IN TEXT

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CRIPPING THE TEXT

 

I’m going to spend a few minutes focusing on access to text materials. While we talk a lot about access to buildings and other kind of physical environments, we rarely talk about access to printed materials.

 

We know that some people prefer their materials in braille, other people in large print, and a great many of us have become very addicted to listening to our books.

 

But overall very little attention has been paid to how to translate the knowledge we have about people that have print- related disabilities.

 

I wanted to create a text environment that both supports and provides textual access ramps.

 

Until I raised a daughter who has a learning disability, I had no clue as to the barriers to accessing text materials. Through her I saw the struggle of a very smart person who had extreme difficulty reading. And part of the difficulty was that text only provided one format. You have to be able to read from the beginning of the chapter to the end of the chapter with know help basically no access provided to that text.

 

SLIDE:   GOALS:

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In pondering creating a text accessible book, I talked with other people with other reading related disabilities who told me that there are four main challenges:

 

 

* language that is free of jargon,

 

* finding out the content quickly so they can decide if it’s worth reading,

 

* having a scaffolding that is consistent throughout a book,

 

* and easy ways to retrieve key information.

 

 

SLIDE: CRIPPING THE TEXT

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dFor Plain Language I looked at the U.S. Government 2010’s Plain Language initiative as well as well as the guidelines from people with intellectual disabilities who run Self Advocates Becoming Empowered (SABE).

 

I chose to write stand-alone essays because they are easier for people to read than multi-chapter fact-heavy text.

 

Writing in a story format gives the disabled reader more channels to plug into – the intellectual, the sensual and the emotional.

 

I will speak about the structure in just a minute.

 

 

Every resource that I found is included in the book – either in the print book or in the online bibliography.

 

Also as much as possible I chose an online free sources instead of a print-based, limited access source.

 

SLIDE: book structure

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The Structure of the Book was the final layer of the access ramp for the reader. Each essay follows the same structural format:

 

The TITLE is followed by a short quotation (often from disability culture).

 

The SUMMARY comes next. It’s only 1-2 paragraphs and written with careful attention to using a plain language vocabulary.

 

The ESSAY follows, often at a more complex language level but always with an eye to which words are more commonly known.

 

Same-page Footnotes provide easy access to supplemental information.

 

Each chapter ends with two short sections:

Just the Facts Ma’am pulls out the 3 most important facts from the essay.

 

And the Resources section lists the 3 most relevant text sources for further reading. All additional resources are at the book’s website.

 

In summary, I spend a fair chunk of the book’s introduction stating my reasons for these decisions and encouraging the reader, who may also be a writer, to create text access to their own writing;

 

I created a scaffold to assist readers across essays;

 

I used plain language as much as possible but always in the Summaries; and

 

I pulled out important information from each essay and listed it at the end.

 

 

 

SLIDE: 504 sit in

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I know that some of you know this history really well. And for others it may be new information.

 

PREFACE – 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 Deaf7 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.2 Brad’s work to bring disability services to the poorer communities of Oakland was largely done by him, with the support of the Panthers.3

I was surprised when two nondisabled 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.”4

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.6


 

This is just MY version of our community’s history.

 

You have your own.

 

We need ALL our histories to be preserved.

 

SLIDE: PLEASE

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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.

 

 

THANK YOU

 

We are selling Autonomous Press books over there.

 

I will gladly sign books if you like.

 


THANK YOU for coming out tonight and being so gracious.