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Drafting and Introduction of the Original ADA Bill - Part 13

Addressing Unexpected Opposition

Having provided copies of my draft bill to the full Council membership and key members of the disability community, and with congressional sponsorship seemingly in the works, as the end of October approached we thought that the ADA proposal was beginning to pick up a bit of momentum. Soon. however, contrary winds began to blow. Both Terry Muilenburg and Bobby Silverstein had intimated that we would need to have solid disability community support for the Council’s bill. Lex, my other Council staff colleagues, and I had various connections and contacts within the disability community and legislative advocacy spheres, and we began to hear rumblings and rumors about resistance and even hostility within the Washington disability lobbying clique. Much to our surprise, we heard scuttlebutt that some disability organizations were saying that they were unwilling to support the ADA bill. Eventually some of the Washington disability lobbyists told me privately that, while the organizations they represented would not publicly oppose or attack the bill, they were not going to back or endorse it. When I pressed them to say why, they made comments about not trusting work done by the Republican-appointed Council, but otherwise became evasive and vague. As we heard more and more reactions of a similar nature, I became increasingly stunned and concerned. I had expected opposition, even intense opposition, from businesses and other entities that would be affected by the legislation, particularly those opposed to government regulation or civil rights protection, but I had not anticipated trouble from within the disability world.

Finally, I got so frustrated and confused that I made an impulsive phone call to my trusted colleague and hero, Tim Cook. I told him that I thought I was doing some of the best and most important work of my life. People I thought were on the same side are suddenly condemning what I’m trying to do. I’m being criticized and attacked by people I thought strongly would be allies. I just don’t get it. Finally, I said, “Tim, you’ve seen the draft bill. Am I crazy? Isn’t this exactly what we/I should be fighting for?”

He thought for a few seconds and then replied:

Calm down, Bob. Take a deep breath. You’re on the right track. This is Washington. Some people here are against anything new or anything that they didn’t initiate. They take it as a slap to them that someone else comes up with something good when they’re supposed to be the experts. They think they do or should control the legislative process, because they’re the people in the know, the in-crowd. Some of them are always cautious and cynical; many don’t seem to have any dynamic, positive vision of the future of disability civil rights. We who do need to stay the course.

He concluded by telling me, “Just keep doing what you’re doing. It will work out.”

Given Tim’s years of work as a highly effective disability rights advocate with a great sense of priorities and perspective, his feet always solidly on the ground, and a willingness to say what he thought without artifice or guile, and just a really good person, his advice was highly reassuring to me. I resolved to get back to work, saying to myself, “Damn the naysayers, full speed ahead!”

At around the same time, we got another shot in the arm in support of the ADA proposal. Andi reported to me that she had spent 30 minutes on the phone with Mary Johnson, the founder and editor of The Disability Rag. Created by Johnson in 1979, the Rag was considered “the [disability rights] movement’s preeminent journal of political and social thought … that provided a forum for some of the most cutting-edge discussion of disability politics, culture, and experience.”[1]  I knew Mary and had a high opinion of her insights on disability issues and policy, as well as her ability to keep her finger on the pulse of significant developments and trends, particularly regarding legal rights of people with disabilities. Andi informed me that Mary had said that the Council’s ADA proposal “was the best thing to ever hit the movement. If people aren’t supporting it, they’re crazy.” She promised that the Rag “would do everything they can to support it.” She paid me a personal compliment by adding that when she heard that I was working on it, she “was comforted and impressed.”

Tim Cook’s and Mary Johnson’s kind words were soothing and encouraging, but I was still fretting about resistance to our bill from within the disability community. My concern did not lessen when I was asked to go to the U.S. Capitol to meet with leaders of the Rights Task Force of the Legal Committee of the Consortium for Citizens with Developmental Disabilities (CCDD). CCDD was an umbrella group founded in the early 1970s in Washington that worked on disability issues on Capitol Hill (in 1989, it was renamed the Consortium of Citizens with Disabilities (CCD)). It originated when a few disability organizations coalesced to lend support to one another’s budgetary interests. The number of coalition members grew and, during the late seventies and into the early eighties, they increasingly focused on substantive issues, including legal rights of their constituencies. By 1987, it described itself as “a 50-member coalition of national consumer, provider and professional organizations which represents the interests of the thirty-six million Americans who have disabilities.”[2]

The word I got through the grapevine was that the Rights Task Force wanted to read the riot act to Bob Burgdorf and get him to stop pushing his draft bill. As I traveled up to the Hill for the meeting, I felt tense about the possibility of a testy, adversarial confrontation. Several members of CCDD’s Rights Task Force met with me in a small office in the Capitol. They included Paul Marchand, Director of the Governmental Affairs Office for the Association for Retarded Citizens (now the Arc); Liz Savage of the Epilepsy Foundation; and Curt Decker of the National Association of Protection and Advocacy Systems (NAPAS). Their motivation for meeting with me was apparently to inform me directly, but presumably off-the-record, that they and their organizations were not supporting the Council’s ADA bill. While I had certainly heard rumblings that something was amiss with the so-called “inside the Beltway” groups, I was not at all clear what their problem with the bill was.

The start of the meeting was marked by a serious, almost solemn tone. Although the CCDD contingent was definitely making an effort to be civil to me, their initial remarks conveyed a lot of mistrust – distrust of the National Council, skepticism toward our bill, and, by extension, suspicion of me. The basic idea (perhaps understandable, perhaps a bit paranoid) was that if this is coming out of the National Council, it has to be a devious plot by those conservative Republicans – a sneak attack, a backdoor attempt by the Reagan/Bush forces to subvert and remove existing rights. My response was that, while they may not totally trust the National Council, this bill was drafted by me, and I was a person with a disability, had been a disability rights advocate for over 15 years, handled a lot of cases, and written a lot of very visible documents spelling out my positions and beliefs. I said that it’s no secret where I stand, and I would never be part of any ploy to undercut or sabotage the rights of people with disabilities: "You can think what you want to in regard to the Council, but you know who I am, and you know the kind of work that I've done over the years. I wouldn't be party to anything like that. That’s not what this is about, and take my word, that is not what the Council is trying to do either.”

From the perspective of the Washington legislative advocates for disability organizations, the Reagan years were largely ones of defending what was already there, not of advancing beyond. Some described it as "holding on by our fingernails." Disability advocates had faced a frontal assault on two of the cornerstones of disability rights at the time – Section 504 of the Rehabilitation Act and the Education for All Handicapped Children Act of 1975 (now the Individuals with Disabilities Education Act (IDEA). Shortly after taking office President Reagan established the Task Force on Regulatory Relief under the leadership of Vice President Bush, to “de-regulate” regulations which were burdensome on businesses. The Section 504 regulations were chosen for “de-regulation.” And in August 1982, the U.S. Department of Education proposed revisions to the regulations implementing the Education for All Handicapped Children Act, widely considered to be the most significant federal legislation for children in need of special education, that would have severely curtailed the efficacy of that law.

Disability rights advocates Pat Wright, (DREDF), and Evan Kemp, Jr. (Disability Rights Center) had helped lead an intense lobbying and grassroots campaign against the rollbacks that eventually generated more than 40,000 cards and letters from supporters of rights under the threatened disability rights regulations. After three years, the Reagan Administration abandoned its attempts to revoke or amend the Section 504 regulations. The most controversial provisions of the proposed regulations under the special education law were withdrawn on September 29, 1982, and the remaining proposed changes were not implemented. Otherwise, however, the Reagan Administration did terminate the Social Security benefits of hundreds of thousands of disabled recipients; distressed by this action, several people with disabilities committed suicide. A variety of groups including the Alliance of Social Security Disability Recipients and the Ad Hoc Committee on Social Security Disability fought those terminations.[3]

Thus, disability organizations in Washington had been clinging tenaciously to existing laws, regulations, and programs to prevent their being eliminated or weakened. It was not much of a stretch to fear that since this ADA proposal came out of a Reagan-appointed conservative group it might be a sneaky plot to roll back or take away disability rights. Some in the CCDD delegation may also have been afraid that, even if an adequate statute were passed, most of the important provisions of Section 504 were in the federal regulations; regulations under a new law would have to be written by Reagan Administration federal agencies.

In general, I had observed a feeling among some Washington disability activists of just being beaten down; a feeling that the disability community was constantly fighting battles and frequently losing battles, and barely holding on, making it impossible to forge ahead. My tendency is to think that it’s almost always better trying to move ahead, because even if you do not get there you stand a better chance of at least holding your ground rather than sitting still and letting the opponents pick you off and grind away at what you previously established. I had been surprised by the pessimism of some disability community representatives in Washington at this time. They did not think anything good could be done and it was not even worth trying. In private I had heard such sentiments expressed by people sincerely sharing their gut feelings – they were genuinely afraid about what was going to happen. Some of it may be personalities – some people are just pessimistic – but for others it was a heartfelt belief that we are going to get hurt even worse if we do not keep a low profile and avoid trying to do too much.

In the meeting I responded to the oppositional views by repeatedly telling them what I was trying to do in the bill and seeking to convince them that my motives were pure and not contrary to theirs. And over and over, I said if you will tell me what’s wrong with the bill maybe we can fix it. For a while, I got no definite answer, just that the bill was problematic and they couldn’t support it. As I pressed them, they eventually indicated that their concerns went beyond just the origins of the bill and were more substantive – with the content of the proposal. Perhaps by conjuring some disarming Midwestern-boy earnestness I had disarmed them a bit, but finally, after I said again “WHAT EXACTLY IS WRONG WITH THE BILL?” Paul Marchand looked around at his CCDD colleagues and then began to give some specifics. They fell roughly into four categories.

(1) Paul said that their biggest overall concern was that they did not want the ADA to undermine federal regulations implementing Sections 501, 503, and 504 of the Rehabilitation Act. Getting the Section 504 regulations issued in the first place had been a protracted battle, and the regulations had subsequently been assaulted by President Reagan's Task Force on Regulatory Relief just a few years before. CCDD feared that if the ADA covered the same ground as Sections 501, 503, and 504, it would put the regulations under those statutes back on the chopping block, opening them up for wholesale reconsideration, and an Administration unfriendly to disability rights could substantially rewrite and weaken them. Since Section 501 regulations already prohibited employment discrimination based on disability by agencies of the federal government, Section 503 regulations prohibited such discrimination by federal contractors,[4] and Section 504 was a statutory discrimination ban implemented by a host of federal regulations, the question was why a law should be written to cover those things again, with the risk that some existing protection might be lost or lowered standards established.

(2) A related concern was the fear that the ADA would not protect critically important specific protections under Rehabilitation Act regulations, provisions that had been included in the regs after hard-fought efforts to have them recognized. Paul and Liz cited the example of “preemployment inquiries.” Without such protections, applicants with disabilities may be screened out in the hiring process through medical examinations and inquiries relating to disabilities or medical status. Employment application forms and job interviewers frequently requested information concerning an applicant’s physical or mental condition. Having learned about a disability, employers might base a decision on information about the individual’s disability but never disclose that fact. In such a situation, an individual with a disability had no opportunity to challenge discrimination, or even to determine whether the exclusion was based on disability or other factors. Fearing that they would be victims of unacknowledged discrimination, individuals with nonobvious disabilities were faced with the dilemma of responding honestly to inquiries about their conditions and risking exclusion, or answering falsely and risking potential repercussions of lying on application forms or in interviews. Such situations particularly confronted job applicants with so-called “hidden” or “invisible” disabilities, that might include conditions such as epilepsy, diabetes, emotional illnesses, heart disease, cancer, and HIV infection.”[5] regulations issued under Sections 504 and 501 prohibit employers from asking questions about a job applicant's medical history or the nature or extent of disability (although they could ask about ability to perform job functions, e.g., driving a car, or lifting objects, etc.) until after the employer has made a conditional offer of employment.[6] The CCDD contingent viewed it unlikely, or at least questionable, that the current Administration would set such a standard in issuing regulations under a new law.

(3) CCDD representatives also expressed a general concern about the ADA bill incorporating new language and new terms not found in Sections 501, 503, and 504 and regulations under them. They wished that NCD had, to the greatest extent possible, used language from Section 504, which, because it was familiar and time-tested, would make the bill less threatening and easier to explain and defend to potential congressional supporters and the general public. Paul did not list the provisions in which our bill had made too much use of Section 504 language, but someone mentioned the addition of a (non-exhaustive) list of physical or mental impairments that would qualify as disabilities. In the statutory language of Section 504, there was no such list, but in analysis (regulatory guidance) accompanying the original Section 504 regulation, HEW had included a list of major examples of particular diseases and conditions that were considered disabilities: “orthopedic, visual, speech, and hearing impairments, cerebral palsy, epilepsy, muscular dystrophy, multiple sclerosis, cancer, heart disease, diabetes, mental retardation, emotional illness, specific learning disabilities, drug addiction, and alcoholism.” Rather than risking that a court might someday conclude that one or the other of these conditions did not constitute a disability, my idea had been that the statute should include the list of examples, so I had incorporated the HEW list in the bill. So this was not exactly the introduction of new, unfamiliar language, but the borrowing of interpretive guidance under Section 504 and putting it in the NCD bill.

(4) Another criticism of the bill was that it would apply some coverage and nondiscrimination standards differing from those afforded to other minority groups and women. At the time, the disability community was in the midst of working with the Leadership Conference on Civil Rights (LCCR) and other civil rights organizations on the Fair Housing Amendments Act and the Civil Rights Restoration Act. Moreover, passage of the ADA would surely require the strong backing of the civil rights community. Unity of the disability rights community with the civil rights community was therefore a paramount priority. Accordingly, the CCDD contingent deemed it vital that disability rights legislation not provide protections more extensive than those granted under other civil rights measures. One cited example had to do with coverage of health insurance: many people in the disability community believed health insurance should be a part of the ADA because people with disabilities often could not find affordable health care. Yet, nondiscrimination in health insurance was not a right afforded to any other group under civil rights laws and providing this new right to a select group of people might alienate persons in the civil rights community, whose full support would be critical if the ADA was going to make progress in Congress.

On hearing these concerns, I thought that perhaps I could accommodate them. My primary response was "I think I can draft around that. If those are your concerns, I’ll write a bill that will do that.” To the angst that our ADA bill would undermine federal regulations implementing Sections 501, 503, and 504 of the Rehabilitation Act by duplicating coverage of federal agencies, federal grant recipients, and federal contractors, I replied that maybe we could revise the bill so that the ADA would apply just to entities that were not already covered under the Rehabilitation Act nondiscrimination provisions. We could simply have the ADA leave what was already covered alone, and cover everything around that central, core area of things already addressed. We could write the ADA to cover only entities previously left out, leaving a hole in the ADA’s coverage like the center of a donut, but covering the areas that were not otherwise included. I would later refer to it as the “donut approach.”

To the issue that important rights and protection under Section 504 regulations, such as pre-employment inquiries standards, might not be incorporated in ADA regulations, my proposal was to put the language into the statutory language itself – to spell it out in the law. In regard to concern over using new, unfamiliar language and terms in the bill, I expressed some agreement with the idea, within limits, but I tried to explain and defend the rationale for inclusion of the list of examples of mental and physical impairments in the definition of disability, while not taking an inflexible stand on the matter. (I did not even mention the definition of “reasonable accommodation” that I had included in the bill based upon a lot of research, thinking, and writing that Chris Bell and I had done in connection with our work on the Accommodating the Spectrum of Individual Abilities report). As to not providing more protection for people with disabilities than was available under civil rights laws protecting minorities and women, I agreed that we could work with them to move in that direction, and negotiate with LCCR about its application to particular issues.

When I finished making these points, I asked the group, “If we can make changes to fix those things and address your concerns, would you support the bill?” Again Paul looked around at his compatriots and then said “I guess we would have to” – an answer that was music to my ears.

I felt like I was walking on clouds along the National Mall all the way back from the Capitol to my office at the Council at 800 Independence Avenue. I was relieved and delighted that we seemed to have surmounted an impasse that might have scuttled the whole attempt to get robust disability community support for our nascent ADA bill. I knew well that the Council could not parlay the bill to enactment standing alone. We still had quite a way to go before getting organizational endorsements and commitments to back the legislation publicly, but I believed we had gotten a solid foot in the door with CCDD – a key player in federal disability legislation. I felt that for the first time we had a real chance to get important leaders of the Washington disability community behind the gist of the ADA. I was very gratified by Paul Marchand’s leadership in identifying difficulties the group had with our bill in its current state.

The surmounting of this obstacle led to an upsurge of my hopes for the bill.

Continue to Part 14: Negotiations and Tumult over Acceptable Elements of the Bill

[1] Fred Pelka, What We Have Done: An Oral History of the Disability Rights Movement, p. 238 (2012).

[2]Civil Rights Restoration Act of 1987: Hearings on S. 557 Before the Senate Committee on Labor and Human Resources, March 19, 1987, S. Hrg. 100-374, p. 380.

[3] Robert Pear, “Fairness of Reagan’s Cutoffs of Disability Aid Questioned,” New York Times, section 1, p. 1 (May 9, 1982).

[4] Under Section 504, the prohibition against discrimination is spelled out in the statute and implemented by regulation, while the statutory language of Sections 501 and 503 only mandate “affirmative action” that the implementing regulations interpret as requiring nondiscrimination – an interpretation that has been upheld in judicial decisions.

[5] S. Rep. No. 116, 101st Cong., 1st Sess. 39 (1989) [Senate Report]; H.R. Rep. No. 485, 101st Cong., 2d Sess. pt. 2, at 12 (1990) [Education & Labor Committee Report]; House Judiciary Committee Report at 42B43.

[6] In such a case, the employer can declare a willingness to hire the applicant based on the information available to the employer at the pre-employment stage, but this offer can be made conditional upon the results of a medical examination that will attempt to determine whether the applicant can in fact do the job. If it turns out that the medical examination discloses a condition that will prevent the applicant from performing essential job tasks, then the applicant does not have to be hired. If the employer withdraws the conditional offer of employment, however, the applicant knows and can prove that it was because of the disability uncovered during the medical examination. The applicant is then in a position to challenge the refusal to hire as discriminatory if he or she believes it to be so.