(Appeared in MAINSTREAM 18 April, 1986)
It happened nine years ago this month. On April 5, 1977, thousands of disabled folks in cities all over America converged on their regional offices of the Department of Health, Education and Welfare. They held mass rallies outside. They sat in. The issue was the implementation of the regulations that would add the real meat to Section 504 of the Rehabilitation Act of 1973. The regulations had been written three and one half years earlier in the Ford administration. But since then, they sat awaiting the signature of the HEW Secretary, which was then the lead agency in 504 enforcement. Candidate Jimmy Carter promised that taking action on this would be a top priority for his administration. But nearly two months into his term, still nothing had been done.
So Dr. Frank Bowe, executive director of the American Coalition of Citizens with Disabilities (ACCD) at the time, was authorized by his board to send a letter to President Carter and HEW Secretary Joseph Califano stating that if the regulations were not signed by April 5, there would be consequences. ACCD began gearing up for the big day.
The deadline came and went. A rash of sit-ins followed. Most of them lasted 24 hours or less. The sit-in in the HEW national office in Washington, D.C. Iasted 28 hours before the protectors were forced out by a HEW order prohibiting anyone from bringing any food, medication or supplies. But in San Francisco, 50 of the 120 people who burst in April 5 remained there until May 1. They left only when it was official that the regulations had been signed by Califano. Their 25-day siege remains the longest occupation of a federal office by protectors in U.S. history.
The media attention this all created, especially in San Francisco, was unprecedented. The main headline of the May I San Francisco Examiner read VICTORY MARCH and was accompanied by a picture of a man on crutches and a woman in a wheelchair leaving the building. The empathy and support the protest generated from other groups was also unprecedented. Food was donated by everyone, from local grocery chains to the Black Panthers. Labor unions and religious groups donated money and people power. Senators, Congressmen and the mayor lent their encouragement.
It was, perhaps, the most significant event in the history of the disability rights movement. What follows are the reflections of three people who were involved from beginning to end. Kitty Cone and Judy Heumann were in San Francisco. Frank Bowe was in Washington.
Kitty Cone: (Kitty Cone refers to herself as a longtime advocate of disability rights, especially in the area of transit.) Everyone expected that when the Carter administration came into office, the 504 regulations would be issued. Carter had said in his campaign that he would get them out. Then word came out that Califano was to go over them because there was a lot of pressure coming from the agencies that would be affected, the hospitals and the universities and so on. So ACCD basically said "Issue them as they were when you came into office. Don't change them, and issue them by April 5."
And when there was no kind of cooperation coming from HEW, ACCD called for actions.
We started organizing about a month before the demonstration occurred. We had a mailing list that was just thousands of organizations that we invited to participate in planning. We just collected everything we could find and mailed out and invited everyone to come to meetings. We printed up tens of thousands of leaflets about the rally. Basically, disabled people made the decisions about what kind of actions we were going to have. We really built a significant coalition of organizations and individuals representing different disabilities. We also built a support coalition, which represented every aspect of our community from churches to labor to civil rights groups. During the sit-in, that community support was very, very important. We had support from the mayor and the supervisors, as well as from the governor and the assembly and the state senate. I don't think we would have been able to pull off the kind of sit-in we did without the community support. It acted as a protection, for instance, when HEW made the initial decision that they weren't going to allow food to be brought in to us.
Obviously, discussions went on between San Francisco and Washington about what to do with us. Initially, we probably thought they were going to arrest us. And then, because it electrified the state of California, and because we had such popular support, HEW decided it would be a bad decision.
As I recall, there wasn't an accessible bathroom. There was one stall that we got the door off and put a curtain on. Mayor Moscone brought one of those portable showerheads. We hooked it up to a washbasin and I got to take the first shower. That was a big media event. We all wore the same clothes for a long time. Some of us brought sleeping bags, planning on staying one night and a day or something like that.
(How did you keep from getting bored?) Everybody was involved in a committee. There was the food committee, for instance. They were involved in soliciting food. There was a fund raising committee. There was a Sunday morning religious services committee. And one of the things I remember the most was the amount of singing we did. It was very reminiscent of the black civil rights movement. We sang, all the time. We sang "We Shall Overcome." We sang civil rights songs.
One of the important things about mass action is that it builds up a sense of solidarity, and the people who are participating get kind of transformed. We were changed in a way where none of us who participated will ever be the same. We managed to make the federal government do something it didn't want to do. And we did it all by ourselves. We began to perceive of ourselves as a very, very powerful force. It changed the public's perception of disabled people from being people who are weak to people who are strong and capable and tenacious.
(Where were you when you finally won?) About 18 of us were chosen to go to Washington. We just chased Carter and Califano all over town. We went to Carter's church, and we sang freedom songs outside. We went to the HEW office in Washington, and they shut the doors and these big federal police came. Califano was speaking at some hotel, so we went and we picketed outside and he had to go out the basement door. We just followed them around to make the point that they would not meet with us.
But when we finally realized the regulations were going to be signed in the format we wanted, it was a tremendous, tremendous victory. A few people stayed in Washington to deal with implementation. But most of us came back. Then when we heard that it had actually happened, we organized this huge victory march out of the building. We felt we had really relied on ourselves, and we had pushed the federal government back.
I think it was really a turning point in the disability rights movement. It helped us to be seen as an oppressed group which has a legitimate struggle for civil rights. I think there are many things today that we take for granted. Bathrooms are accessible. Curb cuts. Access in so many different ways is either directly or indirectly a result of those regulations.
One of the most important lessons is the importance of coalition. People of all types of disabilities coming together can be a very effective organizing force. Another thing that was very important is that we ultimately have to rely on ourselves. We know what we need and we have the self-interest to make it happen. Another thing is the importance of mass action. Some people think mass action is out of vogue these days. I don't think that's true. I'm excited about these demonstrations that are happening at the APTA conventions. I don't think the era for mass action is over. When you have an issue that was as critical as that was, you need to get out there, and you need to be public
Judy Heumann: (Judy Heumann is co-director of the World Institute on Disability.) We really had no opposition. We were sleeping on mattresses provided for us by our state Department of Health. And there were also demonstrations that took place down south in California, near Pasadena.
A group of us decided it was important to go to Washington because we wanted to work on giving more life to the "nationalness" of the demonstration. So we raised money out here to send people back. We got support from the International Machinists Union. We stayed in a church, and they rented a van like a big moving van, and that's how we got around D.C. We organized lots of demonstrations while we were there. We had two candlelight vigils outside of Califano's house. The vigils were outrageous! In the book "Califano" there's a chapter on the demonstrations. It's a very interesting analysis from his perspective. He was furious that we did what we did. He was furious that we didn't trust him, as a liberal, to do what was right for us. It's important to read that chapter in the book because he distinguishes between the civil rights for disabled people and others. He introduces cost and feels it is an appropriate introduction.
But anyway, we made things simple. We went to his neighborhood, and we spoke to the kids. And we said, "Mr. Califano doesn't want disabled kids going to school you." We had lots of people there, but we were very orderly. We brought it into his neighborhood. We made it very real.
In the meantime, people were working back home. They were having demonstrations outside of the building. As we were getting copies of the proposed changes, we would send them back there. We were analyzing them and they were analyzing them.
(What do you recall of the day you won?) We had been having meetings with different representatives. We were trying to pursuade a broad section of representatives that what we were doing was right. When they were going to release the regulations to be discussed, and there's not a doubt in my mind that those regulations would not have come out the way they did had we not been working in a national coalition, they weren't going to allow cameras in the room. And we told them if they didn't, we weren't going to allow the meeting to go on. So they allowed the press in. We wanted everything very open.
There was a big sense of loss. Everyone left and I had to stay around for meetings. I felt a real separation anxiety. My prime support group was back in California. They had a big celebration leaving the building. There was a real sense of victory and power which was not an illusion. It was not an illusion. If I compare it to today, it's different because people believed at that point that they could make a difference. I think we really felt that we had nothing to lose. And feeling you have nothing to lose is important. When people are afraid of losing something, the, become more protective. But they ultimately might lose because they're afraid they're gonna lose. We were willing to do anything to get what we believed in. When you want a movement to occur, people have to feel a power that they make a difference.
And I think it has to be more than asking people to write letters. You have to also ask people to risk something personally. People weren't going to work, people were willing to risk arrest, people were risking their own health. Everybody was risking something. People were sleeping on the floor and they weren't able to do things they normally do.
There's not a doubt in my mind that it was worth it. It was another stage in the movement and that's what's important. to give an historical perspective to the movement. After the regulations were signed, people staved involved. People got involved in training and monitoring in their communities. People got involved in lawsuits. We are clearly further ahead today than we were at that point in relation to the degree of involvement disabled people have around the country. But one of the tragedies of the '80s is that as the administration has worked at chiseling away at our rights, we've docilely written letters and sent people to meetings and we've had no activities in the streets. I'm a very strong believer in mass action. When all else is proven to not be successful, you ultimately show your commitment by going to the streets and risking arrest peacefully.
We should remember that the movement has been going on for hundreds of years, and we continue to play an important role. We need to work in broad-based coalition, not just cross-disability, but cross-movements. Every individual has the ability to make a difference and abrogating that responsibility is an individual failure.
Frank Bowe: (Dr. Frank Bowe is the director of research for the Architectural and Transportation Barriers Compliance Board. He is also the author of several books, including "Changing the Rules" which was recently released by T.J. Publishers in Silver Spring, Maryland. It contains his account of the 504 sit-in.) We had a meeting in Denver of the board (of ACCD) in March of'77. Eunice Fiorito, who was chairman of the group at the time. met with me before the meeting and said, "The time has come to do something dramatic Come up with a plan and present it to the board at Denver". What I came up with was a plan to physically take over the Washington and regional offices of HEW.
The board unanimously adopted it. Their first instruction to me was to announce that to the President and to the Secretary of HEW. So when I came back to Washington that Sunday, I immediately wrote a letter. I sent the letter to the President, and I gave a copy to Joe Califano. I said that we had basically had it, and the delays were unreal. Man, we'd had it and if there wasn't any action by April 5, there would be "nationwide political action." I got a call from the White House for a briefing. HEW's response was "Thank you for your letter, but we're doing the best we can."
We had a tremendous effort of sending thousands upon thousands of letters, telegrams, phone calls to every organization of or for disabled people. We also printed up thousands of buttons that said SIGN 504.
People sent us money. They said "Thank God!" and they sent us money. The phone never stopped ringing! Never! It was unbelievable! The response was overwhelming! We put people in touch with their local demonstration leaders. People threw themselves into this. Nobody could have anticipated that kind of an outpouring!
Nobody ever stayed in a building as long as California did. I don't care what group you're talking about. So, of course, we never expected that. We thought the demonstration would last three or four days, by which time we fully expected Califano to come out with the rules. I guess we were a little naive on that one. Our problem in Washington was that we did not come fully prepared for a long stay. Califano's lawyers threw a monkey wrench at me. They made a demand that nobody was allowed to come into the building for any reason, including delivery of food or medicine. We didn't want people dying or going into comas. We got the word out to all the media, but they didn't bite. There was no media pressure. We got the word out that people were in life-threatening situations because the Secretary issued this order. When reporters called, they could not get any verification.
After 28 hours, we all left the building together in a strong show of solidarity. I went back to my office and started working the "corridors of power" in Washington. They (the people from California) decided to come help me. They thought I wasn't doing enough. This thing was dragging out. At that point, it was two weeks. So, I assume, they made the decision to come in and help me.
We had some arguments. In California, it's a legitimate political tactic to go to someone's home and follow them to church. In Washington, we just don't operate that way. They stayed with me for several days and went back, and it was another week before the regulations were signed. I really doubt that there was any direction connection. They didn't hurt us. It helped. Any pressure helps. But I think Joe Califano, his reaction to having them at his house, it just made him madder. That made it too personal. It was Joe Califano, the enemy. It was Jimmy Carter, the enemy.
I got a call from Peter Libassi (on the day the regulations were to be signed.) He was Califano's number one man. He said "Frank, the Secretary is calling a press conference. That's all I can tell you. Trust me." So I went to the press conference and they announced the rules. I felt a kind of euphoria. But my physical response was one of much more calm than l had felt in many, many months. A lot of people called me and told me about champagne parties. People were celebrating wildly all over the country. I went home and spent the evening with my wife and my child, which I had not been able to do for a month.
(Was it worth it?) Without any question. There was a Lou Harris poll that was just released. They conducted a poll of 1,000 disabled Americans. This was the first national poll ever to ask people with disabilities about their lives. The overwhelming majority said their lives had improved greatly in the last decade, probably because of 504. But here's my point: those of us who did it, and there were many of us, I don't think we ever had a chance to have such a massive impact on the lives of tens of millions of people. That was a very unprecedented event. And that's why I don't think any of us ever experienced anything quite so great.