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II Career in Washington, D.C., 1976-1980

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More on Family Response to Accident

Bonney

Debby, when you became disabled, how did your family respond to your disability?

Kaplan

Well, at first they were just very traumatized. It was unclear what was going to happen and whether I was going to live, so at first it was just total shock. Then, after a couple of weeks, I think it became more clear what the prognosis was, and my father started at first really looking at where I should be doing my rehab. He takes on things like this and they become projects for him. So the first part of the project was getting me into the best rehab program and then finding out what other kinds of resources were available.

I think my mother was into being supportive and wanted to be around and be helpful, but I don't think she really had much of an idea of what was going to happen or what things were going to be like. Culturally, she didn't have much of a context (not that many families did), having been raised in Russia and China in a very different environment.

They, I think, were both interested in providing whatever support I would need. I don't think I ever got any impression from either of them that my life was over and that this was a huge tragedy. It was more how do we get through this and where do we go next. There was never an assumption from either of them that I would not go on to law school. And so it was actually a fairly positive reaction.

Bonney

How about your brother?

Kaplan

My brother liked to come visit, bring me gifts. You know, it was something that he could do for me that was sort of big brotherish.

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And so he was around, especially in the very beginning. During rehab he would show up from time to time.

Bonney

When you say your father was looking for appropriate rehab, was that when you went to Valley Med [Santa Clara Valley Medical Center]? Was that the place he found?

Kaplan

Right, yes.

Bonney

Was that well known in that time period?

Kaplan

I think so. It was one of the main spinal cord injury centers in the western United States.

Bonney

And still is, is it?

Kaplan

I think so, yes. They had a lot of federal money then. I don't know if they still do. And it was definitely the place to get spinal cord injury rehab at the time.

Bonney

Now, you also mentioned that while you were there, you formed this patients' support and information group.

Kaplan

Yes.

Bonney

Did this group continue on after you left?

Kaplan

I think so. I think so, yes. There would be I'm not sure how often, monthly or bi-weekly meetings. I think after I left, they just got more interested in peer counseling. I remember they had different professionals with disabilities who were on staff, and that just seemed to be more and more of something that in the seventies was recognized as an important part of rehab.

Bonney

Is that going on today still in any formalized way?

Kaplan

I have no idea.

Bonney

Okay. All right. Also, you mentioned that during the time that you were in Berkeley, in this period, you met Judy Heumann.

Kaplan

Right.

Bonney

Tell me about your relationship with her.

Kaplan

I think we realized that we had a lot in common, that we both were interested in leadership and in moving things along, and became friends pretty quickly. It was only one year, I think, that we

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overlapped here in Berkeley before she went off to Washington, and so it wasn't a lot of contact, but we were definitely friends.

Bonney

So when you got to Washington, which we'll talk about shortly, getting there--

Kaplan

She came back to California.

Bonney

Oh! [laughing] So you didn't work with her in Washington.

Kaplan

No, we didn't overlap. She came back to CIL, and so it was like we were trading places or something. But she was very helpful to me when I came to Washington. She gave me lots of names of people to meet and helped me understand the political lay of the land and helped get me involved in the American Coalition of Citizens with Disabilities [ACCD] and helped start a lot of important relationships that I had with people in Washington.

Disability Rights Center Established in Washington, D.C.

Bonney

Let's talk a little bit about you going to Washington. You went there in about '76?

Kaplan

In '76, in August of '76.

Bonney

Why did you go to Washington?

Kaplan

Because I had a job. The only interview I had in my third year of law school, when everybody was doing interviews--the only one I was interested in--I was not interested in working for a law firm or for government. There was a fellow named Marty Rogol who worked for Ralph Nader. He oversaw a public interest research group. He was interviewing for all the Nader groups at that time. I think he has since gone on to U.S.A. For Africa or something like that. I've seen him a little bit since.

We had an interview. He really liked me, liked the idea. What I was saying was, "You guys should hire me so I can do disability rights work in Washington." He approached Sid Wolf, who is the head of the Health Research Group. Sid was not interested. I think that was very appropriate. I don't think disability rights would belong in a health activism group, anyhow. And so things were not going anywhere.

I had met Ralf Hotchkiss, who had a relationship, a very close relationship, with Ralph Nader, and asked him if he would

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intercede directly with Nader. He did, and asked Nader whether he would directly support me in setting up my own organization, which he did and gave me a small grant to allow me to set up the Disability Rights Center. So that was all arranged in the spring and summer of 1976. I took the bar exam in July and then moved to Washington to start the Disability Rights Center.

Bonney

What did you want this Center to do?

Kaplan

My proposal was to focus on two issues. One was continuation of an issue that I worked on while I was in law school, and that was consumer rights for users of medical devices and equipment. We did some work in that. We put together a consumer warrantee book for people who used medical devices and equipment, and we also [chuckling]--

Ralph Nader hired a law student who worked for him and did some research on the Veterans Administration [VA] and their purchasing practices: what they would purchase for disabled vets and what they wouldn't. When I started the Disability Rights Center, we issued the report by a lawyer named Danny Clearfield, who is now a pretty well-known consumer activist, I think from Pennsylvania, and had a press conference that Nader attended. And that was one of the first things we did.

We also focused on employment practices of the federal government with respect to people with disabilities. My theory was that if the federal government was going to mandate nondiscrimination for federal contractors and grantees--at the time it was Section 503 and Section 504--it would be a good idea to take a look at their own practices and make sure that they were living up to the same standards that they were applying or a larger, a better standard.

So a lot of our work had to do with Section 501, which is the statute that applies to federal government for equal employment and affirmative action for people with disabilities. We did a research project, looking at the actual practices of ten different agencies who allowed us to come in and look at them. This was the beginning of the [President James E.] Carter administration, when they had this real open-door policy. I'm sure the door started closing [chuckling] after a while.

We came out with a blistering report, presented it in testimony to Congress, and as a result, Section 501 was strengthened in some major ways. So that was one of my major accomplishments there.

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Bonney

Back to the consumer rights for medical purchases, medical equipment, what kind of report did you put out?

Kaplan

We put out a report for consumers, outlining what consumer warrantee rights people had under existing law, giving examples of how one would use that for wheelchairs or other medical devices or equipment, and giving people state-by-state analysis of consumer protection laws so that people could begin to understand how to use existing consumer laws, because I think most consumers with disabilities really hadn't a clue.

Bonney

Now, did this somehow dovetail into the Everest & Jennings lawsuit?

Kaplan

The Everest & Jennings lawsuit was something I got involved in at the same time. There's a great little story about how that happened. I knew about this investigation or a complaint that Ralf had filed against the Department of Justice during either the Nixon or Ford administration. Ralf went to England and found that Everest & Jennings was selling wheelchairs in England at a much lower price than they were selling them here because in England they had public health care and they just wouldn't reimburse at a higher rate.

So he tried to purchase ten wheelchairs or something and asked them if they would ship them to the United States, and they refused, which is a violation of antitrust law, American antitrust law. And so he filed a complaint with the Department of Justice, which just sat. Nothing happened to it.

I started working at the Disability Rights Center during the presidential campaign, and so in January Carter was inaugurated, and Nader and Carter had a very close relationship. Nader had a series of luncheons at a hotel, at which different, new Carter administrative-secretary-level people were invited to speak and talk about public interest issues. There was a big audience there. I was invited to sit at the head table at a luncheon that Griffin Bell, the head of the Department of Justice, the attorney general, was the speaker. So he gave a speech.

During the question and answer period, I raised my hand. I think I was one of the first people that was called on. I asked him what was happening to this complaint that was languishing in the Department of Justice. He was embarrassed, didn't know anything about it, and said he would look into it. I got a call from an attorney in the Department of Justice two days later, saying they were about to file.

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So I called some friends at the Western Center for Law and the Handicapped to see if they wanted to file a companion consumer class action because at that time that was how antitrust litigation went. There would be a Department of Justice lawsuit and then a companion consumer class action. And I was involved to some extent. I think I was co-counsel in the consumer class action.

We nearly got nailed because [chuckling] we--a disabled woman named Diane Latin, who was a friend of Ralf's, who worked at the President's Committee at the time--we talked her into being a plaintiff in the lawsuit, one of the main plaintiffs--and in her deposition she told them that we had basically cajoled her into joining the class and it wasn't all necessarily voluntary on her part. If it weren't a public interest lawsuit, we would have gotten killed by the other side. We would have been taken up on charges on champerty and barratry.

But as it turned out, we ended up getting Public Citizen to defend us, Public Citizen Litigation. And they filed response papers, saying that if it's a public interest lawsuit you can do that because there was some legal precedents, so it was a close one.

The Department of Justice filed their lawsuit, and they were using Ralf as an expert witness.

Bonney

Let me back up. When you say "Ralph," are we talking Nader or Hotchkiss?

Kaplan

Hotchkiss.

Bonney

So Ralf Hotchkiss went to England.

Kaplan

Right.

Bonney

Okay.

Kaplan

He was an expert witness in the Department of Justice case. I was involved in the consumer class action. And [chuckling] the Department of Justice was just sort of amazed that all these different people who they would run into and get involved in their investigation all knew each other. They referred to us as the Handicapped Mafia. And they were not very happy when they found out that Ralf and I were getting married because I was representing--it was a little too cozy relationship. But as it turned out, the lawsuit was settled and so they didn't have to go to court.

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Bonney

How was it settled? What happened?

Kaplan

Oh, the Department of Justice ended up accepting a really meaningless settlement which we opposed but which a federal judge allowed to go through, saying, you know, they promised they would never engage in antitrust practices again. It was sort of a slap on the wrist. But the real result of the lawsuit against Everest & Jennings was that it signaled to potential competitors that E&J was in a weak position. And around that time, Quickie really began competing much more seriously, and so did Rolls Invacare. So Everest & Jennings' monopoly power with respect to the wheelchair market really was undercut significantly, and they have never really since recovered. To a large extent, it was the litigation that ended up doing them in because it was an attractive time for competitors to get in.

Bonney

Now, you also said that Ralph Nader, I believe, had hired someone to go into VA and look at what kind of equipment they would purchase?

Kaplan

Right. What were their purchasing practices.

Bonney

What was the outcome of that? What happened there?

Kaplan

There were recommendations in that report that the Veterans Administration really use its purchasing power in a much more advocacy way to improve the quality of equipment that they were purchasing, because they were just purchasing stuff and had huge market clout and were really not using it for the benefit of the people who were getting the equipment, and that was basically what the recommendations were.

Bonney

Now, what was your role in that?

Kaplan

I didn't have much of a role. The report was really done and written before I got there, but Nader hoped that that would help sort of kick-start the Disability Rights Center.

Bonney

Did it?

Kaplan

Sort of. We were able to get some publicity and get moving, yes.

Bonney

Okay, so the big report was the employment, the 501 employment report.

Kaplan

Right.

Bonney

Tell me, if you can remember, what agencies you went in and looked at--

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Kaplan

Oh, God.

Bonney

--and what kinds of things were you finding?

Kaplan

Gee. That was a long time ago. Labor, I know. Commerce. It was a lot of the big agencies. HEW [Health, Education and Welfare]. I don't know if we looked at Defense. There were ten different agencies, I really couldn't say who all they were. We tried to pick large ones. We looked at their statistics: how many people with disabilities they had over time. We looked at what kinds of accommodations they were making. I believe we looked at whether they had policies in place around affirmative action for people with disabilities. We may have looked at what levels people were at. We found them at pretty low levels. And I don't recall what else.

There were several standardized things that we looked at in each agency. We went in and looked at their records and interviewed people. We interviewed employees with disabilities; we interviewed the civil service--I mean, the human resources people. And the basic finding was that even though the federal government had been under an obligation for many years to engage in affirmative action in hiring people with disabilities, that the actual numbers of people with disabilities within the federal government--the percentage was declining. So that was the headline-grabber when we issued the report. That was really what we focused on to get attention of members of Congress.

The Rehab Act was up for authorization, so Section 501 was on the table--in '78? I think so. My testimony was pretty much the only testimony that they had from a disability community about Section 501, and the testimony was referred to in the legislative history.

Bonney

What committee did you testify before?

Kaplan

I don't remember. Human Resources? I don't know. Whatever--well, no. It would be Labor and Employment, I guess. It was the committee that oversaw the Rehab Act.

Bonney

Which legislators were involved or interested in this issue?

Kaplan

I worked with Lisa Walker, who was then working for--who was the senator who Judy worked for? This was a long time ago.

Bonney

Oh, Randolph.

Kaplan

No, not Jennings Randolph. Jennings Randolph was the head of the Subcommittee on the Handicapped at that time. He was atrocious.

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I don't remember the guy's name. But it was people who had already been involved in the Rehab Act and Title V.

Bonney

Title V?

Kaplan

Of the Rehab Act.

Bonney

Okay. Did you also work with 503 and 504?

Kaplan

To some extent.

Bonney

What did you do with 503?

Kaplan

With 503, Bernie--oh, what was his last name? I just saw him recently. He's still alive. Head of the President's Committee. Bernie something-or-other was taking a lot of flak from some of the large corporate members of the President's Committee over the Section 503 regulations because they thought they should be watered down. And so he asked me to sit down and negotiate with them. They all ended up being really pissed off at me because I wouldn't give them what they wanted [chuckling]. The negotiations didn't go anywhere. I think he promised them that he would deliver somebody who would cave and who would give them what they wanted, and I just refused. And so Section 503, I think, was not tinkered with in the reauthorization.

For Section 504 I was involved in the sit-ins and over the regulations in the HEW building in Washington, D.C., and Ralf Hotchkiss and I came out here to San Francisco and visited the folks in the HEW building here.

Bonney

Let's get into that in just a minute. I want to go back. I should ask you: when you testified on the Hill on 501, what was the outcome? What happened?

Kaplan

They changed Section 501. They strengthened it significantly.

Bonney

What happened within the departments themselves?

Kaplan

Civil Service Commission had to issue new regulations. I think one of the things we did was get Section 501 enforcement taken away from the Civil Service Commission, which is now the Office of Personnel Management, to the EEOC [Equal Employment Opportunity Commission]. So enforcement of Section 501 went to an agency that was much more civil rights oriented. Under the old Section 501, if you were a person with a disability and you wanted to file a complaint, you really had very little legally that you could do. You had to follow existing civil service procedures. There was nothing particular to Section 501.

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So we beefed up the complaint procedures so that somebody could file a complaint under Section 501, take it into federal court, and get damages from the federal government if they were proven to have discriminated. So we changed it a lot.

Bonney

Now, did you work directly with the EEOC to implement changes?

Kaplan

Yes, we were involved in commenting on the proposed regs and stuff like that.

Bonney

Did you write the regs for them?

Kaplan

No, no. There were people there who felt that they knew what they were doing.

Bonney

And you concur with that?

Kaplan

No. I mean, we filed comments that we thought they should strengthen what they were doing.

Bonney

And they ultimately did.

Kaplan

Well, they came out somewhere in between, which is what they usually do.

Activities in Support of Section 504 of the Rehabilitation Act of 1973, and Thoughts on the Road to the Americans with Disabilities Act

Bonney

Okay. Let's go back, then, to 504. What was your role in Washington in the 504 sit-in?

Kaplan

I was involved in some of the discussions with Peter Libassi, who was general counsel to HEW, on behalf of Joe [Joseph A.] Califano [Jr.] with the disability leadership before the sit-in happened. Those negotiations ended up in a stalemate, and the sit-in happened, and Ralf and I were involved in the sit-in and spent the night there and then went home the next day. So we were part of the leadership that organized the sit-in and tried to figure out what to do next.

Then we were very supportive--at a certain point, there was a delegation from California that came out and engaged in a lot of rabble rousing, having candlelight vigils outside Califano's home and stuff like that.

Bonney

Did you participate in those?

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Kaplan

I don't remember participating in those. I don't remember going out to them, but we helped arrange--there was, I think, an Episcopal church on Washington Square, where people stayed, and we helped arrange that. I remember when the regulations were finally signed, we had a big celebration dinner at our house, with everybody.

Bonney

Why was the sit-in in Washington so short?

Kaplan

Because [laughing] they wouldn't let us have any food! They took the complete opposite approach to what happened in San Francisco. In San Francisco, I think, thanks primarily to intercession of the mayor, Mayor [George] Moscone, the feds ended up having to allow people to have food brought in, to really set up sleeping arrangements. They eventually wound up being able to shower and have, you know, their needs acknowledged and to some extent met.

In Washington, D.C., Califano took a very hard line. They were talking about arresting us, and they didn't allow any food or any medication or anything in. Fred Schrieber, who was the executive director of the National Association of the Deaf, who is no longer alive, needed heart medication, and they wouldn't allow that to come through. I mean, it was incredible.

There was one employee of HEW who felt sorry for us or felt --was in support of us--and tried to throw us some food across the police lines [chuckling]. It was like throwing donuts and fruit [chuckling]. It was absurd. And so we decided that under those conditions, we should probably just all leave together, as opposed to allowing the whole thing to sort of dissipate and lose momentum, because there were a lot of people who just couldn't stay under those conditions.

Bonney

So once you left the offices, then what did the group do? How did you continue working on the issue?

Kaplan

I don't really recall. We dispersed. I'm sure there were meetings and we were trying to figure out what to do, but I think most of the action then focused on San Francisco.

Bonney

Now, at this point, you and Ralf are married and living in Washington?

Kaplan

We were not married, but we were living together in Washington.

Bonney

So then you and he came out to the San Francisco sit-in.

Kaplan

Yes.

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Bonney

And testified at the hearing that was held.

Kaplan

Right.

Bonney

What was your testimony?

Kaplan

Well, we were talking about what happened in Washington and how horribly we were treated, and talked about the negotiations and the fact that we thought we were being dealt with in bad faith by the administration. They would say one thing and then come back with another version and water it down even more and that we just didn't feel that there was any point in trying to negotiate with them.

Bonney

In Washington, who were the people in government who were pushing for passage of 504?

Kaplan

Within government?

Bonney

Yes.

Kaplan

I'm not really aware of very many people within the administration who were pushing for Califano to sign the 504 regs. What was mostly going on was that Califano was getting a lot of advice from inside HEW about what a bad idea these regulations would be. And these were the regulations that were drafted under the [President Gerald R.] Ford administration and that the Ford administration had never implemented. And there were several people within HEW who thought that these were going way too far. That's what I recall. I don't recall any particular strong people inside HEW.

Bonney

Do you remember the names of these people who were saying it's going too far?

Kaplan

No. I mean, we would just hear indirectly about people.

Bonney

Okay. In our first interview, you talked about John Wodatch coming out for that conference in '75 or '76 and that you thought that was sort of a precursor of him working on writing the 504 regs?

Kaplan

Yes.

Bonney

Tell me about that. What went on there?

Kaplan

Well, I don't really know what you're asking.

Bonney

I mean, did John Wodatch just go back to Washington and write these regs up?

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Kaplan

They had written the proposed regulations--

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Kaplan

--draft regulations that were what we wanted during the Ford administration. John and the people who worked with him. I guess internally I assumed they were in support of them, but they were not at a level that was high enough to be engaged in some of the policy debates. It was the assistant-secretary-level people, I think, within HEW, where I don't think we had any support. So Califano was not getting any advice internally in favor of signing the regulations as they had been written.

Bonney

Now, why was John Wodatch and--I think Lisa Walker was involved in that a little bit and there were others--why were they so visionary in their thinking at that point to write the regs?

Kaplan

I don't know. I think they're a pretty decent set of regulations, although I think some people now would probably have written them a little differently, given some of the litigation under the ADA [Americans with Disabilities Act] because the ADA language in the statute and the regulations were taken from Section 504. I couldn't say. I really don't know.

Bonney

How would people change 504 wording today?

Kaplan

No, it's the ADA language that's taken from Section 504. It would be primarily over the three-part definition. It's really too complex for most judges to understand. They don't get it. The HIV case that was heard before the Supreme Court [Bragdon v. Abbott] yesterday is a great example of the law just being too complex for most judges to at all understand what's behind it.

Bonney

Can you explain what the three-part definition is and why it's too complicated?

Kaplan

Well, it's a definition that says you're covered by the Act if you have a disability which significantly impairs one or more major life activities, which most people don't have a problem with, although most people would define major life activities more narrowly than the courts and the regulations would. But then it's also if you have a history of such an impairment or if you are regarded as having such an impairment. It's really the third prong that is what the HIV case is about, although their lawyers are trying to argue that they're covered by the first prong, which is a little risky because they're saying that a person's reproductive capabilities are impaired, and that's just politically not--it's a pretty risky thing.

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The problem with the ADA is that the judges tend to look upon it the same way as other disability law, which primarily focuses around entitlements to benefits, and they cannot really get beyond looking at the ADA as some sort of benefit that people are either entitled to or not because of the nature of their disability.

So if you look at it from that point of view, being regarded as having a disability by, say, an employer or somebody who operates a place of public accommodation just doesn't make any sense at all. It's only if you're looking at the behavior that is alleged to be discriminatory that that third prong makes sense, and I have a feeling most litigators just are not able to explain that very well. I think a lot of ADA litigators don't really get it, either. It makes perfect sense to those of us in the movement, but our thinking is not really the same as most people who aren't exposed to disability.

Bonney

Do you have ideas on how the language should be changed?

Kaplan

Well, no, I don't. There are other people who have some ideas, but they would never really say it publicly because they wouldn't want to invite any amendments to the ADA because once Congress would open it up to amendment, there would be no control over what they might do. So, while people might have their own ideas about how it might be written better, they're not at all interested in having Congress revise it. And so those discussions really don't go very far, because there's no point.

I don't really know. I haven't thought about it that much. I think I know what the problem is, but I haven't really come up with what I think would make sense.

Bonney

Okay. Let's go back, then, to the 504 sit-in in San Francisco. Were you there just for one day? Or did you stay for a while?

Kaplan

No, we didn't sleep over. We just went in for the day of hearing. We were mostly visiting my parents.

Bonney

Why do you think it was so successful? Why were people so accepting of the sit-in in San Francisco? What was the difference between that and Washington or even L.A. [Los Angeles]?

Kaplan

I think it's just San Francisco. I think it's because of CIL and the impact of the independent living movement in people's thinking about disability. People in San Francisco--it was a pretty liberal political establishment, and they really didn't have a problem understanding that this was about civil rights and that people needed to be supported. And the disability movement in the

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Bay Area had established a lot of friendships with other groups. Like, it was the Black Panthers who were providing food. San Francisco at that time was, I think, just the right kind of political environment to be supporting something like this. So I think it was a combination of things: the success of the movement but also Moscone was the mayor. It was a pretty different time.

Bonney

What about the people who were in charge of the sit-in in San Francisco? Do you think they were a big reason it was a success?

Kaplan

Well, it was very tightly organized, and some of the leaders just really understood how you motivate people and keep people involved in a grass-roots effort. And they created a real strong sense of community inside the building.

Bonney

Was there dissention between the disabled groups on the West Coast versus the East Coast? I know that ACCD and Frank Bowe were involved a lot on the East Coast, trying to make it happen, get it signed.

Kaplan

Yes.

Bonney

Was everybody in agreement on how it was going to go or what was going to happen, and when?

Kaplan

There's always tension between Washington insiders, who, I think, by nature of the roles that they play and the relationships that they have in Washington, are usually much more ready to compromise. They are the ones who have tremendous pressure to come up with compromises. That's how politics works in Washington. And it's the outside groups who keep the insiders in Washington from compromising too far. That's the dynamic that goes on, not just in the disability movement but in lots of movements. It's just the nature of the relationships and the different roles that people play inside and outside.

That was played out to some extent, then there was distrust of what Frank was doing, and Frank feeling under tremendous pressure to make something positive happen. You know, a compromise is either a stroke of genius or a horrible sell-out, just depending on how it's viewed by people. And you don't know until after the fact, sometimes, how it's going to be regarded.

Bonney

So did Frank Bowe and ACCD want to compromise in this position?

Kaplan

To some extent, yes. They were more willing to entertain some modifications to the regs, and the outsiders were saying, No changes whatsoever, period. I couldn't say what particular changes they would be talking about.

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Bonney

So how is it that the San Francisco group was successful?

Kaplan

Well, I think to some extent that was a major reason why they came to Washington, was because they were worried that compromises might be put in place. They just were willing to play hardball.

Bonney

All or nothing.

Kaplan

Right. And candlelight vigils outside Califano's house. They knew how to use the media. And they did a pretty good campaign.

Bonney

How did you find out when the regs were signed?

Kaplan

I don't remember. I don't remember.

Bonney

Because Hale Zukas tells the story that he was sleeping at Ralf's place and that you called and said the regs had been signed, and Ralf was just hoisting Hale up into his wheelchair [laughing] when the news came.

Kaplan

Well, I remember Hale staying at our place, and Ralf was serving as his attendant. It was just crazy. It was so crazy. Ralf would go in there behind this door, and it sounded like there was a fight going on [laughing]. Lots of noises and banging and thudding. And then Hale would come out.

Bonney

After the regs were signed, what was the atmosphere like in Washington?

Kaplan

Everybody was real happy and festive.

Bonney

Was there a large group of disabled people in Washington at that point who were working on these kinds of issues?

Kaplan

Yes.

Bonney

Was government sort of receptive? What was sort of the milieu of the times?

Kaplan

Well, it was very different from what it is now. There were fewer full-time disability rights activists from a handful of organizations, but everybody was involved in the 504 regulation process. There weren't that many people inside government who were that supportive. There were some, but they were at lower levels than what you see these days. But, you know, there was a group of Washington people and then at that time, there were the California folks as well.

Bonney

Now, did a group of people with disabilities work with the regs?

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Kaplan

Oh, yes. Oh, yes.

Bonney

What went on after they were signed?

Kaplan

Well, they had to--well, then HEW decided that they would have 504 training contracts around the country, and a lot of energy went into the 504 regional training grants. DREDF had one, and Public Interest Law Center of Philadelphia [PILCOP] had one, and I worked on that one. The major effort was in getting information out to people about what the regulations were and how they would be able to use them to file complaints and make compliance happen.

Bonney

So what would a typical training be?

Kaplan

Well, they were different, depending on who was doing them. The PILCOP one, we would spend a lot of time going over the regulations, and then we did role plays, showing people how to negotiate with government officials, and going over effective strategies for negotiating changes and compliance with the laws, and going over what the complaint process was, how you filed complaints. There was a lot of material to cover because the regulations are very lengthy, and a lot of it was very new concepts for people.

Bonney

Now, you were training sort of the basic citizen with a disability.

Kaplan

People with disabilities, yes.

Bonney

On these issues.

Kaplan

Yes.

Bonney

Across the country.

Kaplan

Well, they were regional training programs. I was in the Northeast.

Bonney

Were they one-day trainings or--?

Kaplan

They were two days or three days. I don't recall. They were pretty long. Then DREDF had theirs also. There was somebody else who had the third contract. The Disability Rights Center and Barrier Free Environments in North Carolina, Ron Mace's group, put together a proposal for the Southeast that never was funded because we got our proposal in two minutes late.

Bonney

Oh! What happened?

---

Kaplan

The copy machine broke down.

Bonney

Literally.

Kaplan

Yes, and we were doing everything at the last minute. We ran to get it in, and we were two minutes late, and they wouldn't accept it. So the Southeast didn't happen.

Bonney

Ever?

Kaplan

It eventually did, but it was a few years.

Bonney

What do you think was the long-term effect of these training sessions?

Kaplan

I think it created a lot of disability leaders, and a lot of new people got into the disability movement and had a tool to use. I think it created a lot of activism and energy and new coalitions and new organizations.

Bonney

Was this the first time that people with disabilities were training other people with disabilities?

Kaplan

I don't know if it was the first time, but it was a significant new model.

Bonney

I wondered if it had happened with other groups before.

Kaplan

Not on such a large scale, I don't think.

Bonney

I think it was very unique.

Kaplan

Yes, yes. And, you know, we were all young and energetic. There were lots of people interested in getting involved in the movement, so I think that's probably why there are so many independent living centers now, and that was when a lot of stuff really started moving from just, you know, small groups of people here and there to a more nationwide movement.

Bonney

Was this when the recognition really went across the country that disability is a civil rights issue?

Kaplan

That was the beginning of it, yes. It was the first real civil rights law that people could use to make change happen. Up until then there was nothing.

Bonney

How did people use the law to their benefit? Do you know?

---

Kaplan

Well, recipients of federal funds had to do 504 plans, implementation plans; they had to do compliance reviews. I think a lot of people with disabilities got involved with different grantees in making those happen or in badgering them to do them. And then I think a lot of people got involved helping different entities figure out how to comply if they were interested. And then other people started using the law to file complaints.

Bonney

Sort of forced it to become a strong law? Something that didn't languish?

Kaplan

Yes. No, there were specific parts of the regulations that were designed to really make sure that it didn't just languish. There were specific things that covered entities had to do in order to comply. It wasn't just have a set of regulations, but they had to do internal reviews to see whether their facilities were accessible, and they had to come up with plans to make things accessible. And so there was a lot there that people could sink their teeth into.

Bonney

Now, why was 504 important toward the eventual passage of the ADA?

Kaplan

I think 504 laid a lot of the groundwork in creating leadership, giving people an idea of what a civil rights law would be all about if it were more broadly put in place. It gave people some experience in what made sense, what didn't make sense, how compliance works and really provided the language, a lot of which just went straight into the ADA.

Bonney

Were the players different in getting the ADA?

Kaplan

Yes, much more broad. Yes, much more broad. By then there was a much stronger coalition of advocacy groups in Washington and around the country. Passing the ADA was a real lobbying effort that brought together every part of the disability movement: blind groups, deaf groups, people with AIDS, independent living centers, ADAPT [American Disabled for Attendant Programs Today, now known as American Disabled for Accessible Public Transit], everybody unified. There was a huge organizing effort in Washington, with coalition meetings every week or two to keep things on track, divvy up responsibilities, and whenever there were important hearings, bring in lots and lots of people from all over the country to lobby and testify at hearings. So it was a huge effort to get the ADA passed.

Bonney

Who were members of that coalition?

Kaplan

DREDF, most of the CCD [Consortium of Citizens with Disabilities] members in Washington, D.C., NCIL [National Council for

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Independent Living], a lot of the standard players. CCD is a coalition of over a hundred different groups, and a lot of the CCD members were very involved. Pat Wright from DREDF played a key role, Judy [Heumann] played a key role, Ed [Roberts] played a key role. Becky Ogle really came to the forefront as a Washington leader at that time. Liz Savage was involved before she went into the Department of Justice. And then some of the standard groups in Washington: the American Council of the Blind, the National Association of the Deaf. I don't know if Self-Help for Hard-of-Hearing was very strong. United Cerebral Palsy Association was very strong. It was just a lot of different groups.

Bonney

There was support for the ADA sort of across the board? There was no infighting?

Kaplan

The ADA was crafted so that there would be something in it for everybody. The most flagrant attempt to try to pull that coalition apart was when Congress tried to keep people with AIDS out of coverage of the Act, and the coalition refused to go along with that.

Bonney

Why did they think that was important, to include HIV?

Kaplan

Because they're an important constituency politically and because people with HIV and AIDS face the same kind of discrimination that everybody else with a disability does. But I think there's a natural empathy between people with disabilities and the gay community as well because the nature of the discrimination is very similar. A lot of the experiences people have, being isolated and alienated from their own families, is very similar, and a lot of the social treatment is similar, although for different reasons. And so when it comes together, there's a natural affinity. And at that time, the HIV/AIDS movement really was predominantly gay males. And so that coalition came through the ADA lobbying effort fairly strong.

Bonney

When 504 was being discussed and looked at, drug addicts and people with alcohol addictions were included.

Kaplan

Right.

Bonney

But there was controversy for that group, wasn't there?

Kaplan

Yes, and eventually the law was changed to make it clear that anybody with a current condition is not covered. What was the question? There's no real--the people who represent folks with those conditions are primarily providers. It isn't a consumer base.

---

Bonney

Okay. So eventually people with drug and alcohol addictions were taken out of the law?

Kaplan

If you've got a current addiction, you're not protected by the ADA. But if you have a history, you are--so long as you're not currently--I believe--currently affected by the problem.

Bonney

How did it come about that that change was made?

Kaplan

It was political.

Bonney

Was it the groups themselves that decided to make that--

Kaplan

No. Oh, no! No, it was Congress. It was Republicans in Congress who puts lots of pressure. And I think that happened during the Reagan administration.

Bonney

Okay.

Kaplan

No, that was political. People eventually in the disability community decided not to fight it whole-heartedly because they weren't going to win and there's no real strong affinity politically to try to defend or keep together there.

Bonney

Tell me what Pat Wright's role was in getting ADA passed.

Kaplan

Pat really headed up the coalition and was the primary tactician around lobbying, and did a lot of lobbying herself.

Bonney

And what was Judy's role?

Kaplan

Judy played a similar role in terms of organizing the grass-roots from California, and did a lot of lobbying. Judy did a lot of the grass-roots, bringing people in, figuring out who would make good witnesses. Pat did more a Washington insider sort of job.

Bonney

And what did Ed do?

Kaplan

Ed would come and testify and do lobbying and was very, very effective at getting people's attention. [tape interruption]

Participation on Board of American Coalition of Citizens with Disabilities

Bonney

Debby, when you went to Washington in '76 and established the Disability Rights Center, I'm curious as to why Ralph Nader was

---

interested in disability as an area that his organization would focus on.

Kaplan

Well, I think for two reasons. First of all, Nader would support a very eclectic, diverse range of different groups. Part of it was that if he felt like there was somebody who had strong leadership potential and he wanted to get them going in the public interest movement--he started a pension rights reform group that still exists, and a lot of other different groups: environmental--I mean, Nader has a very broad range of interests.

Ralph Nader at that time got a huge amount of mail from ordinary people, and there was always sort of a steady number of letters from people with disabilities who were complaining either about getting ripped off as consumers or complaining about lack of access and discrimination. And so he was aware of some of the issues and problems just from letters that he had received. And a smart enough person to understand that there was something there.

And then I had a longstanding relationship with Ralf Hotchkiss, who worked at the Center for Auto Safety and got to know Ralph Nader very well. Ralf Hotchkiss worked for Ralph Nader for many years and had a close relationship. And so when he came to Nader and said, you know, "I really think you should support this," that carried a fair amount of weight also.

Bonney

Is the Disability Rights Center still in existence?

Kaplan

No.

Bonney

Did it go away when you left?

Kaplan

No. When I left, we hired a couple of guys who were retired civil service people. That didn't last very long. And then Evan Kemp took it over and was the executive director of the Disability Rights Center for a couple of years, before he went to the EEOC [Equal Employment Opportunity Commission]. And then it really sort of lapsed.

Bonney

At some point in this period of your life in Washington, you became a board member of ACCD.

Kaplan

Yes.

Bonney

When was that? Do you remember?

Kaplan

A couple of years. Maybe '78, '79, something like that.

Bonney

And you were a member of the board, is that right?

---

Kaplan

Right.

Bonney

Are you a founding member?

Kaplan

No. ACCD existed when I came onto the board. It existed when I came to Washington. It was just getting started then.

Bonney

What is ACCD?

Kaplan

ACCD was a coalition of disability organizations and individuals. The goal was to have a state-based coalition in every state. And for a while there, there were state-based coalitions in many states that were affiliated with ACCD. But the goal was really to create a cross-disability coalition that would have a lot of political clout.

Bonney

And a cross-disability focus. Was that kind of a new thought at that time?

Kaplan

Yes. Up until that time, there had been primarily disability-specific organizations, and people felt that so long as that continued, people would have a lot less political clout and less ability to work on common issues, common problems. The whole point was to really create a much stronger political base.

Bonney

What was your role on the board? What did you do?

Kaplan

I went to the meetings. I was part of ACCD when Frank Bowe was executive director. The organization shifted during that time from a sort of a grass-roots lobbying group that was mostly getting by on volunteer money, to a group that began to get a lot more federal money and did a lot more direct work itself. I think during that time many of us began to be very leery of ACCD taking on that kind of role of directly running projects itself, as opposed to organizing statewide coalitions and playing a more political role.

But we really also didn't have much ability to raise money to support those activities, aside from the grants that Frank was very able to bring in. But there was a real schism within the organization over that. Eventually Frank Bowe was fired by the board, primarily over that issue, although there were some strong personality problems also. Frank is not the kind of person that works well with a board overseeing him. And he felt that we were just completely oblivious to the realities of running an organization and having an income stream. I'm sure he was right. But he was not able to really work effectively with the board.

---

While I was on the board, we had several annual conferences that were attended by people from coalitions all over the country, but that really waned after a while. It couldn't hold itself together.

##

Bonney

Is ACCD still in existence?

Kaplan

No.

Bonney

Did it become something else?

Kaplan

Not to my knowledge.

Bonney

It just died at some point?

Kaplan

Yes. After Frank left, Reese Robrahn, who had been at the American Council of the Blind, became the executive director, and he really was not a good fit and eventually left and went back to the Midwest, where he was from. And that really sort of was the end of the organization. The reality was that without the federal grants, the organization didn't have any funding base.

Bonney

Did ACCD play a role, then, in getting the 504 regs?

Kaplan

Yes. It was a very strong presence. It was the ACCD board that actually called for the sit-ins. The idea was to have them all over the country. ACCD was very involved in the advocacy during the sit-ins and in a lot of the work after the regs were signed. They might have had a 504 contract from the federal government. I can't precisely remember.

Bonney

Since it was a newly developed coalition of people with disabilities, were there internal issues around that? I mean, was everybody in agreement on what course of action people should take or the group should take?

Kaplan

There was always friction over what should be the core agenda. You know, for people with physical disabilities, access to transportation was a very big issue; but people who were deaf didn't think that was a very high priority. It's a very difficult coalition to keep together. Aside from that, it was very difficult to organize statewide coalitions and have relationships between the state organizations and the federal organization. There was always tension about where the money should go, should the state organizations pay money to the federal, what does the federal do with it? A lot of classic national organization sort of pressures and politics.

---

Bonney

How did they work through the issues? Say, the issue of people with physical disabilities wanting transportation as a priority and deaf not. How did they decide whether or not that was going to be a priority?

Kaplan

I don't know. We'd talk and talk it to death until everybody got sick of it. I don't really remember. I don't know if there was a real effective way of resolving that. I think what happened was different groups would not be very satisfied with how things were going and eventually sort of drop away.

Bonney

Were the state organizations pretty powerful?

Kaplan

Some were. In some states, like Colorado, I remember, and Ohio and a few others, Massachusetts, there were very strong state coalitions. And in other states there was nothing going on.

Bonney

Did the state coalitions develop into anything?

Kaplan

Some of them, I think, still exist. As coordinating bodies and ways for people to get together and have a united front at the state level. But, I mean, for the most part, those sorts of coalitions are just very difficult to hold together. Independent living centers really have different needs from other disability organizations. And it's difficult enough just to get a statewide coalition of ILCs. I think people have more energy for their own issues than they do for cross-disability work. Except in Washington, where the CCD operates very well because there everybody just does one thing, which is try and influence government and so there's a focus to the activity. But at the state level, it's very diffuse.

Marriage to Ralf Hotchkiss, 1977; Adoption of Desmond, 1986

Bonney

Tell me about your marriage to Ralf. That happened in 1977?

Kaplan

Right. We were married in September, in Washington, D.C.

Bonney

When did you meet?

Kaplan

It was at a conference at the Claremont Hotel in 1975 on state-of-the-art of independent living. Ralf was doing presentations about wheelchairs, and I was doing presentations about legal rights. I had corresponded with Ralf because I was taking a class in consumer protection and did a project on consumer protection

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rights of wheelchair riders, which my professor thought was a trite topic.

Bonney

[chuckling] Overdone?

Kaplan

No. She said it "sounds like somebody's pet peeve," was the comment she wrote on the paper we were proposing to do this project. Really enlightened approach. But we wrote the paper, and I got information from Ralf about what he was doing. So we had corresponded and talked on the phone. Then when I met him I thought he was very cute.

So we became friends, and he helped me get my job. When I moved to Washington, we were very good friends, but he was living with another woman. When they broke up, we got interested in each other and lived together for a few months, but really got married fairly quickly. We were together for five or six months and then got married.

Bonney

That is quick! [chuckling]

Kaplan

Maybe too quick, but I don't know, we lasted for nineteen years.

Bonney

Now, are you divorced from Ralf now?

Kaplan

No. We're separated, and a divorce is about to be filed.

Bonney

How do you feel about that?

Kaplan

Oh, I'm fine. It's a good idea. We have a good friendship still. I really support the work that he does, and we're doing fairly well at communicating together about our son, who is going through a spot of trouble. That'll bring you together!

Bonney

Now, your son is?

Kaplan

Desmond Hotchkiss. He's twelve years old, in sixth grade.

Bonney

Now, how did you get Desmond?

Kaplan

We had been trying to get pregnant, and that wasn't working, and I was always more interested in adoption anyhow because pregnancy and labor never appealed to me much. For a long time, I was involved in the National Conference on Women and the Law. I got involved in that, I think--I think it was while I was here, working for DREDF. That's right. DREDF asked me if I would represent them. And I wound up on the board of the National Conference on Women and the Law for a few years and from that

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developed strong friendships with several women in the San Francisco area. We started a reproductive rights study group.

One of the women in that group is a woman named Sherry Pies, who wrote a book many years ago on reproductive options for lesbians and parenting for lesbians, who I had gotten to know pretty well. She was a member of the group. And who was also very supportive of disability rights and reproductive rights. She came to one of our meetings saying was anybody interested in a baby because she had been contacted by a young woman who was pregnant, who was looking for birth parents but hadn't apparently understood what Sherry's connections were. Because she wasn't interested in two moms. She was interested in a mom and a dad. And so Sherry asked whether anybody was interested, and I said, "Well, yeah, we might be interested."

And so we were given Claire--Desmond's birth mother's name--and contacted her by phone, and then exchanged letters and pictures, and she decided that she would go with us. So she flew out to California some six or seven months pregnant, stayed with some friends of ours, who we know through our church, while she was expecting, and I helped her getting access to her health care, going on visits with her. Went with her when she got the sonogram, and we discovered that she was going to have a boy.

We were going to be there for the labor, but we were out having dinner at a Japanese restaurant. A very, very close friend of ours, who also went to our church, drove Claire to the hospital and was there while she gave birth. She gave birth in, like, three hours. Really fast. So we got there right after Des was born. He spent the night with her, the first night in the hospital, and then came home with us the next day. She stayed in the Bay Area just for one or two more days and then went back to New York.

Bonney

Has he ever seen her or met her?

Kaplan

No. But he knows about her. She actually lives in San Francisco now and has three or four other children. Four other children, I think. That's hard for him. It's hard.

Bonney

Are they living with her?

Kaplan

Yes.

Bonney

Does he want to go live with her or meet her?

Kaplan

He's not interested in meeting her. He's very angry at her. Poor kid. He's got the adoption to deal with. He's got two white

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disabled parents [chuckling]. He's mixed race. And his life is just really unfair [chuckling].

Bonney

His birth mother, then, evidently the issue of disabled parents was not a problem for her?

Kaplan

No. She, I think, had gone to school with kids with disabilities because integration of kids with disabilities was happening when she was a kid. She was a concert violinist and had done some workshops with Itzhak Perlman, and so she had some very positive images of people with disability. What was it? She said she thought we were very clever. She has a British accent. [Imitating]: "How clevah." Really, it wasn't an issue for her. It wasn't a problem.

Bonney

But it's a problem for Desmond now that he's sort of recognizing life [chuckling]?

Kaplan

Oh, you know, we're just too bizarre, too strange. [chuckling] I was talking with a good friend from church who is a lesbian couple who are divorced, and their son is Desmond's age, and he's also mixed race. She was talking with them on Sunday morning and going on and on about how life is just so unfair, you know, and how if you had your druthers you'd probably would like to have, you know, a mom and a dad and they'd both be not disabled, and you'd like a dad who was real macho and who was driving around in a pickup truck with a gun rack. They're both going, "Hmm! Yeah! How'd she know?" [laughing] It was pretty funny. She had them all figured out [laughing]. So as far as they're concerned, they just stick out like anything because their parents are just so odd. They just want to be just like everybody else.

Bonney

Yes, yes. How did having a baby change your life as a disabled person?

Kaplan

Well, we were so naive and oblivious to a lot of stuff. Now it's all sort of coming home to roost, and I'm sure we'll get through it fine. We really didn't think it would have much impact on Desmond. Ha-ha-ha-ha-ha. My philosophy was, well, he's different, we're different, what's the big deal? [chuckling] I wasn't thinking about how twelve-year-olds feel about difference.

But back then, I think it was very useful to be married to Ralf. He just loves to solve problems, and so he was constantly figuring out the logistics of handling a baby. He would always keep Desmond in overalls because he would pick him up by the front of his overalls [chuckling] and just sort of lift him up [chuckling]. Desmond spent a lot of time in Ralf's lap. That was his place. Inside, Ralf would wear a sweater-vest, which could

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stretch, and so he would just put him inside the sweater-vest and button it up, and then Desmond was very secure, in there like a little kangaroo pouch.

I don't know. We didn't get a lot of sleep in the beginning. One commonality, I think, amongst a lot of parents with disabilities is you keep the kid in bed with you because who wants to get up in the middle of the night? That's more difficult. So we had this big king waterbed, and Desmond would sleep in the middle.

Ralf would pre-measure bottles with water and then had these premeasured--he had these little prescription bottles? And just the right amount of formula would fit in one of those bottles, and the neck of the bottle was a little bit smaller diameter than the baby bottle, and so you didn't really even have to open your eyes very much [laughing], although you had to watch what you did. I think he wound up getting doused by milk a couple of times because he wasn't quite fully cognizant of what he was doing. He would just take the formula and throw it in the water and shake it up and put it in Desmond's mouth [laughing].

I don't know. I'm sure we did things differently than most parents did, but it worked.

Bonney

Were you in a wheelchair then, or were you still walking?

Kaplan

I had a chair that I used when I went out. In the home, I walked with a cane, and so I would bring my wheelchair up to the house and when Desmond was little, we had an extra carseat that would fit perfectly inside the wheelchair, and so I would just push him around inside the carseat in the wheelchair, and that was how I would get him around, once he was more than just a couple of pounds. That worked pretty well, until he started walking.

Bonney

And then hell broke lose?

Kaplan

Oh, God! I had a leash because I certainly could not chase after him. You know, one of those little wrist things. Yeah, because I could not keep up with him! When he was a toddler, I don't know, maybe two years old or so, I remember he taunted us once. We were out on a playground, and he found some steps, and he went up to the top of the steps and just sat there. We couldn't get him.

Bonney

[laughing] Uh-huh! So what did you do?

Kaplan

We eventually cajoled him down. Yelling, screaming didn't make any difference. He just really enjoyed that.

---

Bonney

[laughing] Did you try to go through normal adoption channels, like adoption agencies or anything?

Kaplan

No. We went to AASK, Aid for Adoption with Special Kids. But their place was inaccessible at the time. I was just appalled. And they were not interested in parents with disabilities at that time. I mean, they thought we were pretty strange. We didn't even try a regular adoption agency. We knew there would be no point.

Bonney

So how do you legally own Desmond?

Kaplan

We did an independent adoption, which is allowed in California, where the birth mother hands the baby over. There are papers that get signed at that point. We file a petition for adoption, the county does the home visit, and it's approved by a judge.

Bonney

So were there any problems going through that? Or was it pretty smooth?

Kaplan

One minor--hah!--which seemed big at the time--Claire was going to put on the birth certificate that the father was unknown. We didn't realize that she put the birth father's name because she knew who he was. She didn't want to have anything to do with him, but I think she could not put "unknown." Couldn't do it. And so we didn't find that out, though, until we went to the county to get the birth certificate, which had to be filed along with the adoption papers, and then flipped out because the birth father would then have to be notified and given a chance to keep Desmond.

As it turned out, nobody really knew where he was, and so all that was legally required was to post notices in newspapers where we thought he might be and wait a certain time, and then prove to the court that we had tried to find him. And so his rights were terminated, and the adoption went through. It took about a year.

Bonney

So the birth mother, when she signs the papers after the child is born--

Kaplan

No, she could change her mind up until the adoption is final.

Bonney

But she didn't.

Kaplan

She didn't, no. Good thing.

Bonney

Yes.

---

Kaplan

We were going to take him away to some foreign country or something [chuckling] if we had to. We were thinking--there was no way we were about to let go of him because we were pretty attached by then.

Bonney

Of course.

---

Work at the Public Interest Law Center of Philadelphia: 1978

##

Bonney

Debby, in about October of 1978 you began working at the Public Interest Law Center of Philadelphia while you were also working at the Disability Rights Center in Washington. Could you tell me what you did at the Public Interest Law Center and what kinds of issues you worked on?

Kaplan

In many institutions there've been instances reported of abuse and danger to people who live there just as much as in any other kind of setting. Mostly what I did while I was there was help them put together training curriculum. It was like a three-day training program that they put on all over the Northeast on what is vital, what the regulations said, teaching people through role-playing exercises how to negotiate with state officials or officials of entities that receive federal financial assistance, how to get Section 504 implemented, and then how to file complaints. [tape interruption]

And it was also while I was at PILCOP that I was involved in--one of their major efforts was the Pennhurst Case which they had started at the trial court level with parents of developmentally disabled, mostly mentally retarded people, who wanted to get community placements instead of large institutional placements for their kids. And at that point I think the state of Pennsylvania was primarily putting everybody with developmental disabilities into Pennhurst, a huge institution. And that took many, many years before it finally got up to the Supreme Court, but I was involved to some extent in doing some research, going to meetings with parent advocates, deciding on strategies, and that sort of stuff.

Bonney

What was the outcome in court?

Kaplan

We lost. I'm pretty sure the Supreme Court did not grant everything that they wanted. I can't remember the details--it was

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a mixed decision as I recall, but it was not everything that people wanted.

Bonney

Now what was the specific case with Pennhurst? Was there a child, or an adult, or someone who was in there?

Kaplan

It was a group of parents who had children--some of them adult children, but children--living at Pennhurst. And they wanted the state to provide alternatives in the least restrictive environments, the theory being that the institution is a most restrictive environment. And actually, legally, I can't remember what were the legal aspects of the case I focussed on when I was at PILCOP.

Bonney

Did you do anything when you were at PILCOP with DOT [Department of Transportation] regulations?

Kaplan

That was really before PILCOP, that was how I got to know the folks at PILCOP. When I was at the Disability Rights Center, PILCOP was involved in challenging the Department of Transportation's policy--well, actually it was more proactive than that. They filed a--I think it was a petition, asking the Department of Transportation--oh, I know what it was: the Department of Transportation had a project that was looking at designing, coming up with specs for a bus that would have a low floor and be ramped--the Transbus--and then that somehow got scuttled. So we intervened and said we wanted them to revive the project. We wanted them to mandate that design as the specs for buses to be built in the future that transit agencies would purchase. There was a federal case going on over that issue and then the action moved over to the Department of Transportation. A new administration came in that was much more receptive.

Bonney

Who was the new administration?

Kaplan

The Carter administration. They actually wrote up a set of regulations mandating the Transbus specs. We had a group called the Transbus--I don't remember if it was the Transbus Seven or the Transbus Twelve--I think it was seven different organizations that were all part of a coalition of groups that were all part of this effort.

That was how I became very good friends with John Lancaster, who was head of government affairs, legislative lobbyist for Paralyzed Veterans of America. Then later John was replaced by Charlie Sabatier, who's also a great advocate, who's now I think up in Boston.

---

We had like two days of public hearings at the Department of Transportation that were elaborately prepared and crafted by all of us. Working with Tom Gilhool, who was chief counsel at PILCOP at the time, was marvelous because he was a master of strategy and a master of coalition building. And we spent days and all into the night preparing the testimony, deciding who would do what, and just scripting the whole thing. It came off beautifully. And we turned around their policy: they mandated the Transbus.

In order to make it easier for transit agencies to have a large enough order to attract the bus industry to actually change all of their tooling and all of their production lines, they allowed three cities to form a consortium: Philadelphia, Los Angeles, and I don't remember what was the third city. That was when Dennis Cannon got involved, because Dennis was with the City of Los Angeles Transit Agency at the time. The three cities got together and issued a bid, and there were three major bus companies at the time and nobody bid. I mean, it was clearly a conspiracy. The bus industry hated the idea of retooling and they hated even more the idea of the federal government mandating the design of their buses. It would have been a universally designed bus, sort of, not completely, but instead of adding lifts onto buses. We wound up in a huge fight with the industry before Congress and the Department of Transportation, arguing about whether lifts were okay or whether the Transbus would really be better. The industry was arguing that the lifts were better; it was clearly just a bunch of whooey. But we lost because nobody, no company, bid on the request for bids, and so Transbus died. It was very sad.

Bonney

Now, you think the three bus companies colluded? It didn't just happen that nobody bid?

Kaplan

I'm sure they talked to each other and they probably put a lot of pressure on each other not to bid, yes, that's my guess. I believe that. No evidence of it, but I suspect.

Bonney

Yes. When you all were testifying for your two days, what issues did you touch on?

Kaplan

Whether or not the design was feasible: Ralf researched low-floor buses in Europe because they had them on the streets in certain cities. And they countered their arguments that the low floor would not be feasible in cities where there's accumulations of snow in the winter time, because it would be too low and that the boarding time would be--it would take too long to deploy the lift, it would slow everything down. I mean, they threw every argument out that they possibly could. So we just had--we knew what their arguments were going to be and we countered them. Then we came in

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with our own reasons why this design was best, why it was safer for everybody to have a low-floor bus; because all sorts of people have problems with stairs, that's where most bus accidents happen --injuries and people injury accidents. You know, the legal requirement, we had a whole section on the law and why it was a good idea. So it was just a whole variety of topics.

Bonney

Has anybody ever pursued Transbus since then?

Kaplan

Not to my knowledge, no.

Bonney

Still sounds like a good idea.

Kaplan

And now--well, now we've got--look at all the low-floor personal vans, small vans that are all ramped. And each one of those demonstrates that it's feasible that the low floor doesn't cause a problem and that the ramp is far superior. There's fewer technical breakdowns and it's much better, but for some reason and I don't really know why--it would be fun to revive Transbus! [laughter] Revive the Transbus Seven and make it even bigger--it just has never come back as an idea. Especially now--I mean, the idea of the federal government mandating the design of buses is, I'm sure, politically an even more unpalatable idea as far as government policy-makers are concerned than it was twenty years ago. And that may have been--we at that time were entering into the backlash against federal regulation--against the federal government dictating too much. You know, we're far into it now.

[tape interruption]

Bonney

Debby, you mentioned that during this time period you were going to Philadelphia three times a week and, I assume, working in the Disability Rights Center the other two days a week?

Kaplan

Well, I don't--it was about half and half.

Bonney

How did you have time to do two full-time jobs?

Kaplan

Well, they weren't--it was more like two half-time jobs. but PILCOP paid better. I would spend--it was a couple days a week up in Philadelphia. I don't know--

Bonney

The Disability Rights Center didn't keep you busy full-time? You did an awful lot.

Kaplan

Didn't have enough money. I was trying to raise money, but I wasn't very good at it at that point. And that seemed like a way to have my income come from somewhere else for at least part of it. It was very compatible with what I was doing at the

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Disability Rights Center and it allowed the Center not to fold for financial reasons.

Bonney

Did you do other things with PILCOP besides the Transbus and the 504 trainings?

Kaplan

And the Pennhurst stuff?

Bonney

And the Pennhurst?

Kaplan

That was pretty much it. I mean, I may have been pulled into a few things here and there but those were the major things.

Bonney

Okay, now the Pennhurst stuff, when you'd gone to DREDF in '80 or whatever, you did a lot more work in the developmental disability area, right?

Kaplan

Right.

Bonney

We'll get into that shortly, but was your work with the Pennhurst case, did that spur you to continue in the area in DREDF?

Kaplan

Sure, to some extent. And then while I was at DREDF, Ed Roberts was head of Voc Rehab and was a member of the DD Council [Developmental Disabilities Council] by virtue of his position in Rehab. And they were looking for new council members and I think Ed suggested me. And so I was appointed and that really took up a fair amount of my time. I eventually became chair of the council. [laughter] I eventually become chair of most things. I've got to stop doing it.

Study for NOW Legal Defense Fund

Bonney

All right, well, we'll get there, but I wanted to sort of make that connection now, that you started that in Philadelphia, but you carried out later on. Okay. Also, about 1979 you became involved with NOW--National Organization of Women.

Kaplan

Right.

Bonney

Can you tell me what you--

Kaplan

They approached me. At that time, I had decided that I was going to be leaving Washington, coming back to California, and I had this bridge period: the Disability Rights Center was not taking up that much of my time, I'd decided to look for other leadership of

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DRC, and so I was looking for things to do. They approached me because they had a grant from I think the Department of Justice or maybe it was EEOC to do a study--probably EEOC because it was employment related--to do a study of how mediation was being used by local and state human relations agencies' employment discrimination, enforcing agencies at the local level because they had all been mandated by the EEOC as part of how they were enforcing Title VII of the Civil Rights Act.

Bonney

And Title VII is?

Kaplan

Employment discrimination--to have a mediation process that was available to complainants and defendants before a formal investigation took place. So for that project we traveled to several different sites: Seattle, St. Petersburg, Florida--I don't remember where else I went, a few other places--and interviewed Human Rights Commission people, interviewed complainants, reviewed files, and wrote up reports about how well we thought the mediation was working for people. We watched some mediation sessions, also.

Bonney

How were they doing? Were they successful?

Kaplan

Some of the time. Yes, a lot of the time people just needed to sit down and talk about what was happening and be given a chance, once they knew that it was going to get more serious if they didn't from the defendant's point of view, to offer something and settle it so the agencies wouldn't have to investigate every single complaint, because they all had serious backlogs at that point. Yes, in some of the cases people were pretty happy with the results. In others, either the defendant or the complainant would feel that there was some coercion going on, subtle coercion, and things that they had agreed to, in retrospect sometimes they weren't happy with. But I think, generally, for a lot of complaints that are fairly mundane and don't raise significant legal issues, it's a good step in the process, I think, so long as the agency doesn't really put pressure on people that they have to settle.

Bonney

How did NOW use this information? Once they did the report, what happened to it?

Kaplan

It was a contract thing out of the government [laugh]. I'm not sure that they did anything significant with it. It was a NOW Legal Defense Fund, which is not the same thing as the National Organization for Women. They're two separate organizations.

Bonney

Okay. Is it the NOW Legal Defense and Education Fund?

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Kaplan

I don't think so. I think it's just the Legal Defense Fund.

Bonney

Okay. Now, did you also work with them on a project for equal education rights?

Kaplan

No.

Bonney

We had that down.

Kaplan

Not really. I may have been on an advisory committee or something but I didn't work on--no, the only work I did was the mediation project.

Feminist Activities and Prenatal Testing

Bonney

Are you a feminist?

Kaplan

Sure. Sure, yes. Whatever that means. [laughter]

Bonney

Were you part of that movement, were you involved?

Kaplan

To some extent. I was part of a disability contingent that was always trying to get the feminists, the women's movement, to pay more attention to disability issues. Most of the work that I did with the women's movement was working on the National Conference on Women and the Law, which in the seventies and the early eighties was an annual conference that would take place at a different site in the country. Usually it was put on by a coalition of women from all the different law schools in a particular city on a volunteer basis. It was a huge conference, thousands of people would come. They would have a hundred or so workshops and we were always--eventually there were many women with disabilities: Barbara Waxman, Ann Finger, Adrienne Asch, others--who were trying to get women of disabilities on panels where that would be an appropriate addition and having disability-specific workshops as well. I eventually went on to the board and was on the board of the conference for several years.

Bonney

When you first started what were disabled women's issues? What were you bringing to them as concerns?

Kaplan

Well, issues around accessibility, basic things: access to employment, access to housing. There was always a strong contingent, myself included, who were interested in the disability perspective on reproductive rights issues and ethical medical issues, which were always a significant part of the agenda. It

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was through that work that I made connections with several women in the women's community who were also interested in reproductive rights issues from a legal and policy point of view. And I think eventually the disability perspective became a little bit better recognized and was consistent with some of the feminist critique of how the medical establishment was moving ahead with reproductive technologies.

Bonney

Other than disabled issues, have you worked on other feminist issues without the disabled focus?

Kaplan

Not really. No.

Bonney

All right. What sparked your interest in women's issues? Is there something that happened?

Kaplan

Actually, I remember when I was thinking about going to law school before I became disabled. Right before I became disabled I went to a conference, I don't remember which one it was, the eleventh or something--an early one--conference on women and the law that was at Boalt Hall and was very impressed with the people that I met, the issues that they were talking about, and was inspired by other women lawyers. That was when it was just a very different milieu and women were still struggling to have more numbers in law schools, to have their issues addressed more, to be treated fairly in a law school environment, and to be able to get jobs. And then when I was at DREDF, some of us were invited to come to a meeting and be on the advisory committee for a specific conference, because each conference would have its own advisory committee as well as the board of the organization. I served on a few advisory committees for individual conferences before I got onto the board of directors of the organization. But I think my experiences in law school--there were always just wonderful women and they were a real source of support and had a certain empathy for disability issues--certain understanding because of commonality with the feminist agenda--women's issues.

Bonney

Do they still have these annual meetings?

Kaplan

They just got revived. I think there was about a ten-year period of hiatus. There was one this year, I think it was in the San Francisco area. I didn't participate.

Bonney

I was wondering if their issues have changed over the times?

Kaplan

I'm sure. One of the things that happened--it became a fairly--the conference was always fairly left-leaning, progressive politics sort of conference and there was growing pressure from other women in the legal community--as women became more accepted

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in the legal community--there became more of a moderate presence of women in the legal profession as well as women fighting to get in. And I remember there was a Los Angeles conference where we were very concerned because people who were leading it were just too moderate. [laughter] We didn't like their politics.

I think partly the conference became a little bit less relevant: as the eighties kicked in, leftist politics became a little bit less relevant, a little bit less popular, and the dynamics of the conference were such that a lot of the people who were young and activists, also, just had a lot of anger and energy. And the conference organizing would often turn into incredible amounts of backbiting and arguing and, you know, who's more oppressed than who sort of stuff. I think that's part of the reason it fell apart. Also, it just became a pretty unpleasant experience for people. Some of the people who would hang on year after year were people who just had their own agendas and were not about to give anybody else any slack, you know?

Bonney

[laughter]

Kaplan

Ugh! I don't know, that was partly why I was quite happy to leave the organization after a certain point. It just stopped being fun for most of us.

Bonney

Does it still have a left-leaning element in it?

Kaplan

I'm sure it does, I really don't know. I really was not very involved--I was not involved in this year at all.

Bonney

Let's talk a little bit about reproductive rights. You started mentioning that. What's so important about reproductive rights for a disabled person?

Kaplan

Well, a lot of--once you start interjecting technology into reproductive choices, issues of disability pop up all over the place, and for a long time weren't even recognized as such. The first way that disability issues came up was around amniocentesis and prenatal testing, which has now become much more technologically advanced. Several of us were very concerned that people were assuming, just assuming, in the medical profession, even in the women's movement, that if a test resulted in information that a woman was carrying a fetus that would have a disability when it was born, that of course there should be an abortion. We were aghast, and offended, and appalled at what we were reading. There were even articles suggesting that it was a feminist's duty and obligation to abort such fetuses. It was horrible stuff. And people weren't even aware that there was a disability perspective on the issue. So several of us became

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involved and started writing some articles and sharing information, including Marsha--one person is Marsha Saxton who's on the staff here, now--who's done great stuff in the area. We eventually found other women who were also critical of reproductive technologies and what were the ethical implications who were quite open to listening to what our concerns were. And it became really fascinating, and stimulating, and supportive to be in the company of other women who were open-minded enough to listen and think hard about their own biases and assumptions and support what we were saying.

Bonney

Now you were doing this prenatal reproductive rights work through the women's movement at that point?

Kaplan

Through the National Conference on Women and the Law, primarily. Then, also, Ann Finger, who is a good friend and a disability activist and author, was also really interested in these issues and we did some things. I did stuff through--while I was with DREDF I had a pretty loose rein on what I did--and we attended some conferences on prenatal testing and would present our points of view.

We had one disastrous evening where we attended a class at UC Berkeley, Ann and I, with a class of students who were taking the course work to become genetic counselors. [laughter] They didn't really like what we were saying. And we were, you know, fairly idealistic and naive and openly saying that this is the same as eugenics, which didn't exactly endear ourselves to them. [laughter] People just don't like being told that they're using Nazi techniques, it doesn't open them to hearing your message. So there were a few other ways that I got involved.

Then I also attended some conferences that were at the National Institutes on Health that resulted in the chapter in the book that I wrote. That was around the time that the human genome project was just getting off the ground.

Bonney

Now the chapter you wrote is entitled "Prenatal Screening and Diagnosis, the Impact on Persons with Disabilities." and it's in the book titled Women and Prenatal Testing. In that article that you wrote, you said that prenatal screening is a form of social abuse. What do you mean by that?

##

Kaplan

A form of social abuse. Well, what I probably meant [laugh] was that you had to look at the issue in the broader context of how people with disabilities were treated in society and regarded in society, in general. The argument of many disability activists

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has been that by creating a medical test and a procedure that most people undergo or are expected to undergo when they're thinking about or beginning to have children forces people to think about whether they would want a disabled child, without providing any positive information about having a child with a disability.

A lot of what was going on in many people's minds was reinforcing stereotypes, and that active reinforcing [of] stereotypes carries over into society at large because all of those individuals who go through the prenatal testing process are part of the culture. So the procedure, since it's so widespread and takes place, I think still pretty much with a vacuum of positive information--that may in some places be different now--that, on the one hand, we've got the disability movement that's trying to change people's attitudes and value judgments about disability: to look at people with disabilities positively; and then on the other hand, there's this medical procedure that reinforces all the negative stereotypes. That carries over into how people behave in society at large.

Bonney

What would a disabled rights activist say to someone--say, a mother who had just been told that her child would have, say, Down syndrome when it was born. What would the disabled activist say to that mother?

Kaplan

Different disabled activists would say different things [laughs]. You know, that before the parents make a decision they ought to know what kinds of support services are available, they ought to have a chance to hear from--and perhaps through videos from parents who have decided to have a child with Down's syndrome and feel that it was a very positive thing for their family and for the child--to really hear the positive side as well as the negative, scary side. And then it's their decision. I think most of us would not want to take that decision away from people. Some would, though, some disabled activists take the position that that decision just shouldn't be allowed. But most of us would say it's more an issue of what kind of information people get.

Bonney

Is prenatal testing a tool of public policy?

Kaplan

I wouldn't call it that. I don't know what a tool of public policy is. It's a result of public policy that focuses on issues that have nothing to do with disability in a sense. And it's a tool of public policy that is full of implicit negative assumptions about disability to some extent. It's no surprise, I think, to many of us that prenatal testing arises within the medical milieu, within the medical profession, because that's a segment of society that tends to have the worst attitudes about disability; where you find the most employment discrimination

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against people with disabilities in the medical professions and in the professional schools. And where people with disabilities feel tons of abuse, both physical and emotional, from their interactions with medical professionals. That, to some extent, is changing a little bit as a new generation moves in, but the medical--public policy around medicine and disability tends to be pretty horrid. You know, it's the same--there are other issues around disability, not just reproductive rights--but medical ethics are now popping up that are the same genesis-end-of-life stuff. It's the same thing, I think, where you've got doctors and people in the general public who see nothing wrong with using euthanasia with people with disabilities.

Bonney

Whether they're terminally ill or not?

Kaplan

Right. Well, fudging that a lot. And it's not the same but those are all the same--I mean, for many of us--those issues all fall sort of in the same corner of social policy. And you know, the most troubling ethical issues and troubling disability issues, I think, are found in the medical realm.

Bonney

The book talks a lot about people born with disabilities are expensive: they cost the family, they cost society. That their quality of life is terrible: by de facto, if you're disabled, you have a bad quality of life. That probably is an implicit hope that if people with disabilities are prevented from being born, then a lot of social costs will be reduced, eliminated, or whatever. Are those opinions substantiated by any fact?

Kaplan

I would expect that prenatal testing, I think I've heard that the figures are now out, that the incidence of disability is hardly affected through prenatal testing. If you look at it overall--and there's very little, now, to show much in the way of reduced costs--because most disabilities don't happen at birth, don't show up at birth, and many of those that do can't be predicted by prenatal testing--cerebral palsy, for instance. And so it's a very, very small incidence of disability that is uncovered by prenatal testing. You know, many families don't choose to have an abortion, anyhow. So I think it's an argument that people use because it certainly was a very legitimate argument in the eighties and I think still is in the nineties, but I'm not sure it's borne out statistically. But I think it is really camouflage for just straight out bias against people with disabilities.

What I think for many families is really going on is that parents are asked, "Do you want to have a child with a disability?" And it is more work and it is more trouble and I think oftentimes parents are in fact weighing into their decision-making concerns about themselves, but masking it, because it's

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much more palatable to yourself and other people if you say you're doing it for the child. But I'm not real impressed with that argument, you know [laughs]: "You're better off dead," is just not real convincing. It's ludicrous, really. That's what that's all about.

Bonney

You said that some parents are opting not to have an abortion. Do you know what percentage--if it's high or low?

Kaplan

No. I don't know. I'm really not that involved in the issue anymore. I don't know.

Bonney

The article also talked a little bit about possible effects of prenatal testing on insurance policies--health insurance policies --and how that may be denied to someone?

Kaplan

Right. I don't know, there may have been some cases where that actually occurred, I don't know. But, yes, it's certainly--I don't know if insurance companies ever actually--I think there were some instances where insurance companies actually tried to exclude covering medical costs for a child born with a disability after the parents opted to go ahead with a pregnancy when the prenatal testing predicted the disability. There may have been some insurance companies--I think I heard about this towards the end of my involvement in this issue--that tried to exclude, but I think there was so much pressure, that that was such an outrageous thing, widely regarded as an outrageous thing for the insurance company to do that they backed down.

Bonney

Was the insurance company just saying that, "We're not going to pay the extra cost for a disabled child," or were they saying, "We're not paying because the parents had a choice to abort and didn't do it, therefore the child is their own responsibility?"

Kaplan

Well, they would put it in their own terminology which is, this is "a preexisting condition."

Bonney

Therefore not covered.

Kaplan

Right.

Bonney

Was there a specific group of people or some people who were behind this testing and the disabled issue? Is it a medical professional group that started focussing on this in terms of looking at disabilities and saying, let's abort if we're going to have one?

Kaplan

Oh, I don't know how it came about. I'm sure the technology came from the labs and then people went, "Oh, look what we can do with

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this, wouldn't this be a good thing?" I expect, because in the eyes of most people, they would regard it as a good thing.

Bonney

Right.

Kaplan

And it wouldn't occur to them that it might not be a great thing.

Bonney

Do you think it's changed at all? Or is it still pretty much that way?

Kaplan

Oh, it may have changed a little bit--no, I think it's pretty much that way. I think most people still think that if--people now, I think--would accept that prenatal testing is just a standard thing. I don't know, it would be interesting to look at the data and see what the percentage of people who opt for abortions and who don't is. I don't know.

Bonney

Okay. Is there anything else--oh, I wanted to ask you, also, was your interest in the reproductive rights side of this, did that come about as part of your DD work?

Kaplan

Yes. Now that I remember, we saw a film, a video, when I was on the DD council, that had been I think prepared with DD council money, that was all about prenatal testing and what a great thing it was, and that it was just full of information and images about how awful it would be to have a child with a disability, and how awful it is to have a disability. And I was appalled, I couldn't believe it! I think that was part of what got me into it. I just could not believe that something like that was out there in the public and supported by state money. And when I raised my objections, people just looked at me like, "Huh? What are you talking about?" Yes, I think that was one of the things that got me involved and got me going on it.

Bonney

Is forced sterilization of people with developmental disabilities still predominate?

Kaplan

In this country, no. When I was on the state DD council, we were able to implement new procedures, recommend new procedures that the state implemented, that made it much more difficult: requiring court review and court hearings for anybody with a developmental disability to be sterilized without their consent or even with their consent if they were not able to give informed consent--not impossible, but much more difficult with a lot of specific court review to protect the individual, because up until that time doctors could just make that decision on their own with families and without anybody looking over their shoulders. In Europe it's still a pretty big issue.

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Bonney

Still done, you mean? Automatically?

Kaplan

I think so. Well, what happens is a family will come in to a doctor and they'll have usually a teenage daughter with a developmental disability who's starting to experiment with sex in her group home or wherever she lives and they'll be alarmed that she might get pregnant and want to have her sterilized. And up until recently, the doctor would just do it in California. And I don't know what the story is in other states and what kind of procedures exist, but just the fact that there is that kind of court review will often keep the family or the doctor from trying to even bother it. They'll look at other options like birth control and other things including, you know, sex education and dealing with the person more as an adult to the extent that it's possible. But what I've heard is that in Europe there really aren't the same kinds of protections and so it's more standard for that to happen.