Drafting and Introduction of the Original ADA Bill - Part 17
Introduction of 1988 ADA Bill and Making Headway in the 100th Congress
After the National Council on the Handicapped (subsequently renamed the National Council on Disability (NCD)) formally approved its final version of the ADA bill, the Council members were keen to have it introduced right away. In anticipation of approval, Chairperson Sandra Parrrino scheduled a meeting for March 28, 1988, the deadline for the members’ mail ballots, with Terry Muilenburg of Senator Weicker’s office, to press for quick action to introduce the Council’s bill. Two days later, on March 30, I had a substantial meeting with Bobby Silverstein, Staff Director and Chief Counsel for the Senate Subcommittee on the Handicapped, chaired by Senator Tom Harkin, to discuss logistics for introducing the bill. Among other things, we discussed the process for getting a bill number and the significance it may have. The bill numbers are assigned consecutively in the order that bills are introduced, but some tactical timing maneuvers can increase the chances of getting a desirable number. A favorable number is usually one that stands out, has some symbolic value, or is easy to remember; for Senate bills, S. 1, S. 555, S. 1000, (in 1988) S. 1988, or (since 2001) S. 911 are examples. Getting a “good number” may have an unascertainable but usually slight effect in helping a bill along in the legislative process. Bobby and I talked some about potential supporters in the Senate, and kinds of documentation and rationales needed to support the bill. He indicated that the morning of April 28 was a potential target date for the ADA introduction.
Between the end of March and the April 28 possible intro date, the staff of the Council swung into an even higher gear. On April 6, I had a long meeting with Liz Savage of the Epilepsy Foundation to discuss how to enlist necessary support for the bill from disability organizations and related groups. We started off by discussing mailings to be sent by the Council; courting co-sponsors; and getting organizations to sign on to a group ADA bill press release, and issue their own separate press releases. The rest of our conversation was devoted to compiling a list of organizations whose support for the bill we should seek. The lengthy list began with a collective reference to the organizations belonging to the Consortium of Citizens with Developmental Disabilities (CCDD), and then proceeded, in no particular order (and including, duplicatively, some CCDD members) to include: the Paralyzed Veterans of America (PVA), the Multiple Sclerosis (MS) Society, the National Federation of the Blind (NFB), the National Council on Independent Living (NCIL), the American Diabetes Association (ADA), the National Spinal Cord Injury Association (NSCIA), the President’s Committee on Employment of the Handicapped (PCEH), the National Organization on Disability (NOD), the Leadership Conference on Civil Rights (LCCR), the American Civil Liberties Union (ACLU), People First, Handicapped Organized Women (HOW), the Governors’ Committees on Employment of the Handicapped (GCEH), the National Alliance on Mental Illness (NAMI), American Disabled for Accessible Public Transit (ADAPT), the National Mental Health Consumers Association (NMHCA), the Blind Lawyers Association (BLA), the National Organization for Rare Disorders (NORD), the Tourette Syndrome Association (TSA), the American Association of Retired Persons (AARP), the National Down Syndrome Congress (NDSC), the National Parent Chain (NPC), the World Institute on Disability (WID), the National Association for Parents of Children with Visual Impairments (NAPCVI), the National Head Injury Foundation (NHIF), the American Cancer Society (ACS), the American Heart Association (AHA), Disabled American Veterans (DAV), the Muscular Dystrophy Association (MDA), the National Easter Seal Society (NESS), the March of Dimes, and the National Kidney Foundation (NKF). The list of more than 30 organizations Liz and I came up with, while far from exhaustive, illustrates what a wide array of conditions are subsumed under the disability heading, and how many groups could provide support if they learned of the potential benefits of the ADA.
Liz’s meeting with me was just the beginning of the Consortium of Citizens with Developmental Disabilities (CCDD) springing into action in support of the ADA bill. By April 13, CCDD was sending out letters to members of Congress asking them to cosponsor the bill. The template for such letters is exemplified in a letter CCDD sent to Representative William Clay (a member of the House Education and Labor Committee, a founding member of the Congressional Black Caucus, and the first African American Representative from Missouri); Clay did sign on as an early cosponsor of the bill.
The day after my meeting with Liz, I attended a meeting of the CCDD Legal Rights Task Force. Part of the agenda was about activities in furtherance of the ADA bill. Among CCDD’s fortes are congressional relations and lobbying, so much of the meeting agenda was devoted to discussing possible key supporters and potential co-sponsors of the legislation. The Task Force also focused on documents that would need to be developed for distribution to the full consortium in the next week. These included, along with a copy of the NCD’s final draft bill, a cover memo summarizing the bill and its status, a press release, and a sample letter of co-sponsorship.
Back in the Council offices, we compiled a priority list of members of Congress to be contacted, with the names of staff contacts, and a designation of which staff people were assigned to make the contacts. Members listed were: Rep. Major Owens, Rep. James Jeffords, Sen. Paul Simon, Sen. Robert Stafford, Sen. Robert Dole, Sen. Edward Kennedy, Sen. John Kerry, Sen. Howard Metzenbaum, Sen Orrin Hatch, Sen. Tom Harkin, Sen. Alan Cranston, Sen. Barbara Mikulski, Sen. Paul Sarbanes, Rep. Steve Bartlett, Rep. David Bonior, Rep. Steve Gunderson, Rep. Don Edwards, Rep. Augustus Hawkins, Rep. Hamilton Fish Jr., and Sen. Thad Cochran. Additional ones derived from discussions with CCDD were Senators Pete Domenici, David Durenberger, and Rudy Boschwitz; and Representatives John Paul Hammerschmidt, Henry Waxman, Pat Schroeder, Steny Hoyer, Augustus Hawkins, Claude Pepper, Dan Rostenkowski, and Peter Rodino.
These lists were only partial, identifying congressional members with whom, at the time it was compiled, we wanted to make sure that we contacted soon. Of course, we did not need to include Senator Lowell Weicker and Representative Tony Coelho because NCD had already been in close contact them and they had agreed to sponsor the legislation; and I had already met with Bobby Silverstein who, in his position with the Senate Subcommittee on the Handicapped, was the chief contact for Senator Harkin in relation to the ADA bill. We identified Senators Simon, Stafford, Dole, Kerry, and Kennedy; and Representative Silvio Conte as additional people whose offices we needed to contact right away. Many of the names on these lists may not be familiar to younger readers today or people not tuned into the political personalities of the 1980s, but at the time those we identified were among the A-list of Congress members, especially in committee and subcommittee leadership positions. Assigned to follow up with the Congress members on the Council’s priority list were Lex, Andi, Kathy, and me, plus Council members Bob Muller and John Erthein; and former member Justin Dart for Senator Dole’s office, and Council member Kent Waldrep with Representative Steve Bartlett.
Between seeking to line up support of key members of Congress and pertinent consumer and advocacy organizations, meeting with CCDD political strategy and lobbying personnel, preparing a variety of supportive documents, keeping Mrs. Parrino and other members of the Council apprised of what was going on, and sundry other pressing tasks, the Council staff had our hands full for the next few weeks. Finally, however, the ADA bill was introduced in the 100th Congress.
The process for introducing a bill works somewhat differently in the Senate and the House of Representatives. In the Senate, the Senator who is sponsoring a piece of legislation almost always makes introductory remarks, either orally or in writing. The Senator may stand up and be recognized, or may come up to the clerk and submit a copy of the bill along with remarks. In the House, bills are introduced by putting them in the "hopper." Typically, members do submit remarks to accompany the introduction of a House bill. Surprisingly to many who have not been to the Capitol to see Congress in operation, many speeches appearing in the proceedings of the Congress as printed in the Congressional Record are not actually delivered orally on the floor of the House or Senate, but are merely submitted, “for the record” in writing.
On April 28, 1988, Senator Lowell Weicker stood on the floor of the United States Senate and introduced the Council’s March 18 ADA bill, actually delivering his speech orally to the chamber. He began by declaring, “This historic legislation is the work of the National Council on the Handicapped …” He observed that the bill he was introducing had two primary objectives: (1) to "establish a broad-scoped prohibition of discrimination,” and (2) “to describe specific methods by which such discrimination is to be eliminated." He drew a parallel between discrimination that had been suffered by black Americans in places of public accommodation such as lunch counters, restaurants, hotels, motels, and parks with that faced by people with disabilities, and noted that, under Title II of the Civil Rights Act of 1964, “[t]oday, it is not unlawful for these same establishments to exclude, mistreat, or otherwise discriminate against people because of their disabilities.” He proceeded to give many specific examples of disability discrimination in public accommodations, public transportation, employment, state and local government activities, housing, and broadcasting and communications. In the area of public accommodations, he stated:
It has been over 30 years since some zoos and parks were closed to keep blacks from visiting them during the peak of civil rights demonstrations and boycotts. Yet it was only last month that the Washington Post reported the story of a New Jersey zoo owner who refused to admit children with Down syndrome because he feared they would upset the chimpanzees. 
This reference had an interesting history. In the middle of March, I had received a packet of materials in the mail from Arthur Shapiro, a good friend, effervescent character, and professor of special education at Kean University. Art and I had been having a dialog about philosophical and legal dimensions of disability for several years (some aspects of which he would incorporate in his chef d’oeuvre, Everybody Belongs: Changing Negative Attitudes toward Classmates with Disabilities (1998). I had mentioned to him that I was working on a disability rights proposal and was looking for compelling examples of disability discrimination. In a large envelope, Arthur sent me two dozen clippings, mostly from New Jersey newspapers, describing disturbing incidents of mistreatment, abuse, and other injustice against individuals with disabilities. Among these was an article about the boy with Down syndrome who was not allowed into a zoo in New Jersey. I mentioned the story to another friend named Shapiro – Joe Shapiro, who at the time was an associate editor at the U.S. News and World Report – and a few weeks later he featured it in a very interesting piece in the Washington Post in which he also mentioned that I was working at NCD in developing an ADA bill “to be introduced next month by Senators Lowell Weicker and Tom Harkin.” Now, the zoo episode was included in Senator Weicker’s introductory statement.
After referring to the zoo exclusion incident in a series of examples of areas in which people with disabilities had experienced egregious discrimination, Senator Weicker observed that discrimination on the basis of disability was "just as intolerable as other types of discrimination that our civil rights laws forbid." He summarized each of the 10 sections of the ADA bill. Then he offered a rebuttal of fears that the requirements of the bill would be unrealistically expensive. Senator Weicker’s remarks closed with an exhortation that “[i]t is high time that we as a society formally and forcefully prohibit the discrimination that is the greatest handicap to Americans with disabilities.” He again commended NCD “for its fine work in developing this legislation,” and ended with a pledge: “I look forward to working with my colleagues, the council, and the 37 million Americans with disabilities as we move down this difficult road together.”
In subsequent years when I discussed the enactment of the ADA with students in my Disability Rights and Legislation classes, I would exalt Weicker’s introductory statement, declaring it to be a brilliant, oratorical gem and the like. I would then add the punch line, “And I’m not saying that just because I wrote it!” That was in fact the truth; several days before the introduction, Weicker’s office asked me to prepare remarks for their review and revision. It is routine for someone to help draft statements for members of Congress; most often it is a staff person or speechwriter, but it is not unusual for some other person or persons with particular knowledge or interest in a topic of a speech to provide material for a congressional speech. I had, however, never been asked to write words that were to be delivered by a Senator and appear in the Congressional Record; I was pretty stoked about it, and quite pleased when it came to fruition. I was delighted to have the chance to put the best gloss I could on the legislation.
Senator Weicker formally introduced the bill on behalf of himself and Senators Harkin, Simon, Stafford, Kennedy, Dodd, Matsunaga, Chafee, Kerry, Packwood, Leahy, Inouye, Cranston, and Dole. A half dozen of these, Harkin, Kennedy, Simon, Kerry, Cranston, and Dole, delivered their own introductory statements. Senator Harkin, as chair of the Senate Subcommittee, made the most extensive comments of the six; he began by noting that “[t]his bill has been submitted to the Congress by the National Council on the Handicapped in partial fulfillment of the congressional mandate to address, analyze, and make recommendations to Congress on issues of public policy affecting people with disabilities.” He elaborated:
Over the past 18 months, the National Council engaged in numerous meetings and discussions with officers of national organizations, grassroots consumers, Members of Congress and their staffs, and other interested parties to explore the content and wording of its bill.
Based on the approach outlined in the equal opportunity recommendations in “Toward Independence,” augmented by the comments and advice received, the National Council developed the Americans with Disabilities Act.
He added that “the Americans with Disabilities Act, as presented to Congress will not necessarily be the bill finally enacted,” but he believed that it “is the appropriate starting point for making comprehensive civil rights protection a reality for 36 million persons with disabilities.”
After the ADA introduction, Senator Weicker held a press conference. He was in an effusive mood, with congratulations for the Council and all who were supporting the bill. He repeated many of the talking points in his congressional statement and also talked about Sonny, his son with Down syndrome, and what he had learned from having a child with a disability. Then he surprised everyone by announcing that he intended to propose an amendment to the bill he had just introduced that would make the Congress subject to the Act.
The question of Congress subjecting itself to civil rights laws, or even health and safety laws, such as OSHA, was a hot-button issue. Up to that time, Congress had routinely exempted itself from most laws of this kind. Title VII of the Civil Rights Act, for example, contained an exemption that left staff members of representatives and senators without protection from harassment and other discrimination by their bosses. The result was that some congressional staffers I talked to referred to Congress as “The Last Great Plantation.” Among others, the U.S. Commission on Civil Rights had called for Congress to be covered by civil rights laws. Senator Weicker never followed up on his proposal to cover Congress, but the issue would become a large stumbling block later in congressional consideration of the ADA.
As the ADA bill was introduced in the Senate, it was designated as bill “S. 2345.” Whether it was the result of some behind-the-scenes maneuvering, fate, or purely random dumb luck, 2345 was a pretty good number – one that is easy to remember. S. 2345 was referred to the Senate Committee on Labor and Human Resources.
The next day, April 29, Representative Tony Coelho followed Senator Weicker by introducing an identical bill in the House of Representatives. The bill was referred jointly to four House Committees: Education and Labor, Judiciary, Energy and Commerce, and Public Works and Transportation. The number that bill was assigned, “H. 4498,” was not a particularly distinctive or memorable one. He introduced the bill on behalf of himself, Representatives Silvio Conte, Major Owens, chair of the Education and Labor Subcommittee on Select Education and Civil Rights, and James Jeffords, ranking member of the Education and Labor Committee, and 30 of their colleagues. Coelho, Conti, and Owens submitted introductory remarks for the record. Like Senators Weicker and Harkin, Representatives Coelho and Conti acknowledged and paid tribute to the National Council for developing the bill; Representative Owens did not mention the Council in his statement. Representative Conti provided the most information of the three Representatives about the content of the bill and specifically discussed most of its sections. As the Council would later declare, with the introduction of ADA bills in both houses of Congress, “[c]ivil rights for persons with disabilities had entered the national legislative agenda.”
Being on the legislative agenda did not mean, however, that the Council’s bill would miraculously breeze through the halls of Congress swiftly and easily. Back in July of 1987, when the Council was soon to approach Senator Weicker about sponsoring the bill, Mrs. Parrino expressed a hope that, after securing sponsors and getting a final draft of the bill approved by the National Council, we could get the bill introduced in Congress by the end of current session in November, with an outside chance of getting it passed during the 100th Congress. At the August 1987 Council meeting, members of the Council echoed Chairperson Parrino’s wish that the bill would pass before the end of the 100th Congress. I had been highly dubious about the bill getting a souped-up-magic-carpet ride through the legislative gauntlet. At that August 1987 meeting, Justin Dart, about as ardent a believer in the ADA as one can imagine, had declared it would take years to obtain passage.
Since, however, the bill was actually not introduced in the Senate and House until April 28th and 29th of 1988, it was clear to everyone with even a modicum of knowledge about the federal legislative process that the bill could not get through the subcommittee, committee, floor consideration, and reconciliation processes by the time the Congress ended in October 1988 – less than six months after introduction, in an election year with big chunks of time when Congress would be in recess.
Well ahead of the end of April bill introduction, Council members and staff were fully aware that the ADA would not become law in the 100th Congress.
We were also aware that there was a lot that could still be done to advance the ADA before Congress adjourned sine die at the end of the congressional session on October 22, 1988. And in fact a lot of things were accomplished during the interlude between the introduction and the winding down of 1988. NCD's involvement with the ADA role did not stop with Senator Weicker's final acceptance and introduction of its bill, but the torch was passed from NCD to congressional sponsors and their staffs, lobbyists, and other disability interest groups. Some Council members felt slighted by the transition in ADA leadership, but as NCD would later reflect:
[I]t was actually a testament to their success—NCD had accomplished its mission. No other single disability organization could have introduced a proposal to Congress with the same authority NCD possessed as an independent federal agency. NCD had performed the crucial function of documenting a problem, crafting a solution, and securing a foothold in Congress. It brought people to the table to develop a workable solution with substantial consensus.
Passing the metaphorical torch to the legislative branch by no means meant that after introduction the Council had completed its work on the ADA. Indeed, NCD had a very full ADA-related agenda during the remainder of 1988. One of the highest priorities was to continue dissemination of copies of the bill that had begun even before the introduction. In early April, we had prepared a template version of a memorandum from the Chairperson to accompany dissemination of copies of the Council’s final bill. On April 18, Mrs. Parrino sent out a later version of that memo, headed “Introduction of Council’s Equal Opportunity Proposal” along with the bill, to “Members and Friends of the Disability Community,” and announced that Senators Weicker and Harkin, and Representatives Coelho, Conte, and Owens would be introducing it on April 29. Also enclosed with Parrino’s letter was a “Fact Sheet” on the bill that I believe succinctly encapsulated its roots and content, as follows:
about the Americans with Disabilities Act of 1988
- The Americans with Disabilities Act of 1988 was a key recommendation of the National Council on the Handicapped in its 1986 report, Toward Independence.
- The Act prohibits discrimination on the basis of handicap in areas such as employment, housing, public accommodations, travel, communications, and activities of state and local governments.
- The Act covers employers engaged in commerce who have 15 or more employees; housing providers covered by federal fair housing laws; public accommodations; transportation companies; those engaged in broadcasting or communications; and state and local governments.
- The Act specifically defines discrimination, including various types of intentional and unintentional exclusion; segregation; inferior or less effective services, benefits, or activities; architectural, transportation, and communication barriers; failing to make reasonable accommodations; and discriminatory qualifications and performance standards.
- The Act specifies those actions that do not constitute discrimination. They include unequal treatment wholly unrelated to a disability or that which is the result of legitimate application of qualifications and performance standards necessary and substantially related to the ability to perform or participate in the essential components of a job or activity.
- The Architectural and Transportation Barriers Compliance Board will issue minimum accessibility guidelines. Other regulations will be issued by the Attorney General, the U.S. Equal Employment Opportunity Commission, the Secretary of Housing and Urban Development, the Secretary of Transportation, the Federal Communications Commission, and the Secretary of Commerce.
- The Act will not repeal Section 503 and 504 of the Rehabilitation Act of 1973 and all regulations issued under those sections will remain in full force and effect.
- Enforcement procedures include administrative remedies, a private right of action in federal court, monetary damages, injunctive relief, attorney’s fees, and cutoffs of federal funds.
I subsequently prepared a current “Section by Section Summary” of the Act, and we stapled it to the Fact Sheet and used them as a combined handout. Dissemination of copies of the bill, along with the Fact Sheet and Section by Section Summary continued during the rest of 1988. Some categories of targeted recipients were obvious, such as the CCDD member organizations, attendees at the Working Conference at the Council’s February meeting, Cabinet Secretaries, and civil rights organizations, but in addition we sent materials to anybody who asked for information about the bill, and basically anyone or any organization who we thought might be interested, or whose support would be beneficial.
Getting the word out about the ADA by disseminating information about its introduction and content, and providing copies of it were just first steps. Many kinds of follow-up activities were needed. For the Council, seeking additional cosponsors was very important, as were educating and consulting with congressional staff, producing supportive documentation, and inducing media coverage of the legislation.
Though NCD was statutorily charged with providing information and legislative recommendations to Congress and the President, there were restrictions on the ability of Council employees to engage in activities construed as “lobbying,” a term that refers to attempting to influence the passage or defeat of any legislation or policy by directly communicating with elected officials (and some appointed ones). Employees of federal agencies, such as the National Council are generally not allowed to personally lobby members of Congress. The Council members were only part-time government employees, and could lobby Congress on their own time, but not on government time, which gave them significant leeway. As full-time government employees, however, Council staff were prohibited from lobbying. We carefully walked the line between lobbying, on the one hand, and, on the other, permitted conduct such as explaining the Council’s reports and recommendations, educating Congress members and their staffs, and providing any information they requested. I scrupulously avoided ever asking or even hinting toward asking for a member to vote for or against the ADA or versions of it.
In addition to contacts with legislative and executive branch officials (including several meetings Chairperson Parrino had with various White House personnel), to gin up support for the ADA, NCD members made presentations in their hometowns, and promoted the bill in their personal and professional circles. And efforts to champion the ADA bill quickly began to spring up from many sources outside the National Council. One of the most significant was the Task Force on the Rights and Empowerment of Americans with Disabilities, established on May 2, 1988, a mere four days after the introduction of the ADA bill.
Representative Major Owens, Chairman of the U.S. House of Representatives Subcommittee on Select Education, created the Task Force on the Rights and Empowerment of Americans with Disabilities. Owens, who had chaired the Brooklyn chapter of the Congress on Racial Equality (CORE) in the 1960s, was a veteran civil rights activist. During his tenure on the House Education and Labor Committee, and particularly on its Subcommittee on Select Education, which had jurisdiction over some disability issues, Owens had developed a conviction that disability rights was a civil rights issue, analogous to civil rights for African Americans, women, and other groups. He understood the ADA bill in that context, and would go on to become one of the leading congressional advocates for the legislation, and a foremost Black spokesperson for its passage. During my work on the ADA bill, I had beneficial interactions with members of Rep. Owens’s staff, including Maria Cuprill, Staff Director; Bob Tate, Legislative Analyst; and Pat Laird, Legislative Analyst (who had previously been a staff assistant at the National Council).
In March of 1988, Representative Owens approached Justin Dart, who had resigned his position as Rehabilitation Services Administration Commissioner in November of 1987, with the idea of the Task Force, and persuaded Justin to form and chair the group. The Task Force's purposes were variously articulated but were eventually encapsulated by Justin as “to help the Congress consider the Americans with Disabilities Act and other pending and future legislative proposals by collecting information of discrimination and other barriers to people with disabilities, by collecting information on proposed solutions, and by making specific proposals for short and long range public and private action.” The charge was sometimes compressed to collecting information and making recommendations to assist Congress as it considers the Americans with Disabilities Act. Justin arranged what he called a “hastily-organized planning meeting” at NCD offices on May 11. From that point on, the group met somewhat irregularly but roughly once a month. By June 15, Dr. Elizabeth Boggs of the ARC had been named Co-Chairperson, and Lex Frieden was named Coordinator. The number of members appointed to the Task Force quickly grew to 35 and continued to increase in the following months.
I attended several of the meetings of the Task Force, and found the proceedings and discussions informed and informative; productive; and stimulating. Particularly noteworthy to me was the meeting on June 15, 1988, at which, in the course of a wide-ranging dialogue about logistics, strategy, and innovative ideas regarding ongoing and proposed Task Force activities, Bobby Silverstein, Staff Director and Chief Counsel of the Senate Subcommittee on Disability Policy, and Senator Harkins’s right-hand-man on the ADA legislation, led a discussion on plans for congressional hearings on the ADA bill. He suggested that there should be a joint Senate/House hearing. He indicated that people on “the Hill” needed to hear from individuals who endorsed the ADA saying why it was necessary, bolstered by testimony and documents on types of disabilities and the forms and magnitude of discrimination that people were encountering. He believed that Congress needed to hear from successful people with disabilities, and those who could tell of egregious discrimination. He envisioned a hearing featuring “stars” – high-profile, famous people supporting enactment of the ADA. He suggested that 10 to 12 witnesses might be an appropriate size, and thought we might aim for 250 to 300 people in attendance in the hearing room., with a closed circuit TV overflow room. After Bobby completed his preview of what the hearing might look like, Maria Cuprill, Staff Director for Representative Owens and the House Subcommittee on Select Education, added that her office was in full support of holding a joint hearing.
Another potentially significant tidbit popped up when Terry Muilenburg informed the group that Senator Weicker was trying to get support for the ADA written into the Republican platform for the 1988 election, though she did not provide (and presumably was not at liberty to disclose) any details of his efforts. Efforts by Weicker and many others to get an express endorsement of the ADA in the 1988 Republican platform would ultimately not be successful. Although the approved platform did incorporate several provisions supporting specific rights and programs affecting people with disabilities, it did not mention the ADA legislation or even the concept of comprehensive protection from discrimination on the basis of disability.
Two major initiatives of the Task Force would be consumer forums and discrimination diaries. Justin Dart had been holding national tours of what he eventually termed “consumer forums” as far back as 1982, when he journeyed to each of the fifty states and the District of Columbia for what he then called “drafting meetings.” He consulted with, as he reported, “more than one thousand distinguished members of the disabled community, government, the service provider professions, and the private sector,” to solicit ideas and comments about what should be included in a National Policy for Persons with Disabilities the Council was developing. In 1985, he undertook another round of nationwide consumer forums to provide input to the Council’s Toward Independence report. Now, in 1988, he began yet another circuit of consumer forums on behalf of the Task Force. As a result of his prior forum road trips, Dart had become widely known among people with disabilities around the country, something of an icon within the disability community.
As on each of his prior expeditions, as he toured the country, Dart compiled lists of the persons who attended, producing an immense list of people who could later be called upon for grass roots action. Another benefit of Justin’s disability-town-hall-like gatherings was that they helped people at the grass roots level feel that their opinions and views were being considered and they were playing a part in the ADA's development rather than passive bystanders. As people felt more ownership in the ADA legislation, they were more likely to support and fight for its enactment. Maria Cuprill, staff member of the House Subcommittee on Select Education, and a member of the Task Force declared that Justin Dart simply had “no equal” in getting people mobilized. In his efforts on behalf of the Task Force, Justin ultimately convened 63 forums in all fifty states, plus the District of Columbia, Guam, and Puerto Rico, attended by over 7,000 people.
Another major endeavor spearheaded by the Task Force was collecting evidence of discrimination. Traditional means for gathering evidence in support or opposition to legislation being considered by Congress involve congressional hearings, testimony, sometimes subpoenas, government agency and scholarly studies, and position statements by professional and consumer organizations. Most of these methods would play their parts in the negotiations and debates around the ADA, but disability rights activists came to the conclusion that people with disabilities were a largely invisible population and that members of Congress, other people in leadership positions, journalists, and the general public were almost totally unaware of the nature, seriousness, and pervasiveness of discrimination on the basis of disability. Advocates of the ADA became convinced that people with disabilities were going to have to make a strong and dramatic case that people with disabilities were, on a widespread basis, being subjected to inhumane and unjust discrimination. I had written in the early 1970s about the “history of unequal treatment” visited upon people with disabilities. Now, the disability community needed to show Congress and people without disabilities that such mistreatment is dire, pervasive, and intolerable, and manifestly should be made illegal. To make such a case, the idea of “discrimination diaries” was born.
The Task Force, in conjunction with various disability leaders and organizations, initiated a national campaign to get people with disabilities to write “discrimination diaries,” describing instances of inaccessibility and other forms of discrimination they encountered. Some of these diaries were collected at the consumer forums, some were even written or transcribed at the forums, and some were sent to the Task Force. Some people gathered together at “diary parties” to write their accounts in the company of others. The diaries could have multiple benefits: they could provide evidence to justify the need for the ADA’s broad prohibition of disability discrimination; writing about the ill-treatment they had suffered could have a therapeutic effect. Externalizing feelings of hurt and inferiority arising from injustices tolerated silently as if they were just a normal part of life could help to lessen the effects of discrimination by being shared with sympathetic others. The diaries could also be used to educate and raise consciousness of people within and outside the disability community about the realities of discrimination in American society, and to inspire mobilization to engage in political activity to apply pressure on members of Congress and the president. Some 5,000 stories were collected as a result of the disability diaries campaign. A collection of 17 examples of discrimination diary statements was published as Appendix E in the bound copy pf the National Council’s report Equality of Opportunity.
With the passage of the ADA in 1990, and issuance of a final report, Task Force on Rights and Empowerment of Americans with Disabilities, From ADA to Empowerment: The Report of the Task Force on Rights and Empowerment of Americans with Disabilities (1990), the Task Force would conclude its work.
Along with the National Council and the Task Force on the Rights and Empowerment of Americans with Disabilities, numerous other organizations played pivotal parts in supporting the ADA in the 100th Congress. The contributions of these groups – in regard to such activities as community organizing; consciousness-raising within the disability community and education of the broader public; organizing and participating in marches, sit-ins, and other forms of demonstrations; zealous, unrelenting lobbying; letters-to-Congress campaigns; testifying at hearings; generating positive media coverage, and writing op-ed pieces and letters to the editor; as well as involvement in legal analysis and refining statutory provisions; and countless other kinds of efforts to move the ADA forward – deserve wider and more accurate documentation than they have received, particularly documentation by those who were involved and have first-hand knowledge.
In conjunction with Hill staff and the CCDD member organizations’ lobbyists, by June 1, 1988, I compiled and disseminated a “Status Description” on the ADA bills. At that time cosponsors in the Senate numbered 16, and cosponsors in the House had increased to 70 from 30 at the time of introduction. By the end of August, the numbers had grown to 24 in the Senate and 107 in the House; to my August 22 Status Description, I attached a list of “Cosponsors by State.” By the end of the legislative session, S. 2345 would have forty co-sponsors, and H.R. 4498 would come to have 125.
By the middle of June, with the ADA having been introduced in Congress, and the Council’s role in developing it completed, Lex had resigned as Executive Director of the Council. Mrs. Parrino named Ethel Briggs as Acting Director, with instructions to keep close reins on the other staff members, including submitting weekly reports each week in June and July that would be sent to Parrino and other members of the Executive Committee. I’m not sure exactly what prompted this intensified oversight, but my weekly reports showed that I was very busy with ADA-related and other tasks during June and July, including the following:
- Drafting memoranda (on behalf of Mrs. Parrino) to Senators Weicker and Harkin, and Representatives Coelho, Conte, Owens, and Jeffords, regarding ADA coverage of Indian Tribes;
- Tracking the addition of new cosponsors, identifying potential new sponsors, and drafting Status Descriptions on the bill and sponsorship;
- Responding to inquiries, requests for information, and technical questions about the ADA from various agencies and persons, including several recent requests from members of Congress;
- Speaking on “The ADA – Its Origins and Purpose” at a meeting of the Public Policy Seminar of the national Association of Developmental Disabilities Councils (NADDC) to an audience of approximately 150 persons;
- Speaking about “Current Civil Rights Legislation Affecting Persons with Disabilities” at the Annual Conference of the National Association of Protection and Advocacy Systems (NAPAS) for an audience of about 85 people;
- Doing an interview for a 30-minute program, Law and the Disabled, on the Washington Ear, a radio reading service for people who are blind or have physical disabilities;
- Participating in a panel discussion, “Perspectives on Disability Policy in the United States,” at the annual meeting of the Society for Disability Studies, attended by approximately 100 people; and
- Participating in a panel discussion on the ADA with Council members, Brenda Premo, Marian Koonce, and Joni Tada, at the Abilities Expo in Los Angeles, where we addressed between 175 and 200 people.
During June and July, I also had some more complex assignments; at the Council’s meeting in May, the members had requested that I prepare three kinds of additional information for their edification and guidance: (1) In-depth briefing material on the issue of HIV and AIDS; (2) Data and other information on the cost implications of the ADA: and (3) Questions and Answers (Qs and As) and additional briefing materials on technical issues. As to the HIV/AIDS issue, for the Council’s May 1988 meeting, I was directed to address the Council on how AIDS would be dealt with in the ADA bill. Apparently, word got around about my upcoming talk, because, among others, Marilyn Golden of the Disability Rights Education and Defense Fund (DREDF) showed up for the purpose, as she later told me, of “finding out what Bob Burgdorf was telling the Council about coverage of AIDS” under its ADA proposal. It was not a secret that a small, but sometimes vocal, minority of members of the Council were hesitant about, or even opposed to, having people with HIV/AIDS protected under the proposed statute, stemming from whatever discomfort or religious-based beliefs they might have had about gay people or intravenous drug users who had increased risks of getting the AIDS virus. At the time, fear and prejudice about the condition were very widespread to the point of hysteria.
When I had spoken on this issue at the May meeting, I was very direct and matter-of-fact. I said that the coverage of HIV infection by disability nondiscrimination laws was largely a settled matter of law. I told them about the U.S. Supreme Court’s decision in the case of School Board. of Nassau County v. Arline, in March of 1987, in which the Court had ruled a contagious disease (in that case infectious tuberculosis) was a disability under the Section 504 definition of disability. I explained that most legal commentators interpreted the Court’s reasoning in the Arline ruling as applicable to HIV. I added that the wording of the Section 504 definition of disability, on which our ADA definition was based, would directly apply to HIV/AIDS as “a physical … impairment which substantially limits one or more of [a] person’s major life activities.” There was no serious pushback from the Council members about my comments and conclusion. At the end, however, they asked me to provide “in-depth briefing materials” on the issue of AIDS.
Remarkably, by the end of July when I complied with the Council’s request, a number of things had happened that changed the prevailing view of HIV in the country. Most notably the Presidential Commission on the Human Immunodeficiency Virus Epidemic issued a ground-shifting report that, not only provided realistic information about the nature, transmission, and progression of the virus and debunked a lot of misinformation that had been circulating, but expressly endorsed the ADA as proposed by NCD, and contended that without such protection from discrimination the Nation’s efforts to control the AIDS epidemic could not succeed. The U.S. Surgeon General, the Presidential Commission, the Secretary of Health and Human Services, the American Medical Association, the Public Health Service, the Centers for Disease Control, the National Institutes of Health, and Vice President George Bush (the next President) had all come out in favor of such nondiscrimination protection for HIV-infected people. On June 29th, the House of Representatives passed its version of the Fair Housing Amendments Act (FHAA), containing a prohibition against discrimination on the basis of disability incorporating the Section 504 and ADA definition of disability. The Committee Report accompanying the FHAA bill declared, in no uncertain terms, that “AIDS and infection with the Human Immunodeficiency Virus (HIV) are covered under this Act.
In my July 28 memorandum to the Council titled “Briefing Material on AIDS,” I laid out all of these recent developments along with a barrage of other precedents and reasoning why HIV-infected persons are, and should be, covered by the ADA. I also offered a policy rationale that I summed up as “the Council may not ‘pick and choose’ among the members of its constituency; it is responsible for equally representing the interests of all people with disabilities, including those people who are infected by the AIDS virus.” After I disseminated the memo to the Council, the potential dissension between the members about this issue seemed to evaporate, in part because of shifting public opinion on AIDS and people affected by it. The research and analysis I did on the issue would prove useful in articulating policy positions, Qs and As, testimony, and other supportive documentation as the ADA moved forward in the next Congress.
Another project I was working on during June and July of 1988 also grew out of the May Council meeting. At the meeting, with little explanation or discussion, one of the Council members suggested that there was a need for more information about the costs and benefits associated with the ADA. I responded to that request in a 17-page memorandum titled “Cost Data Regarding the Americans with Disabilities Act.”
The foundational document of the Council’s ADA recommendations, Toward Independence, was heavily influenced by costs and benefits data; the Letter of Transmittal of Chairperson Parrino in the front of Toward Independence was explicit:
In analyzing federal programs that affect people with disabilities and in formulating legislative recommendations, the Council has been very cognizant of the financial implications of its proposals, and has consistently sought to develop practical, fiscally responsible approaches. Indeed, one of the Council’s key objectives has been to suggest ways in which federal expenditures related to disability can be more prudently spent and ineffectiveness and counterproductivity minimized. The Council is confident that if the recommendations in this report are implemented, current federal expenditures for disability can be significantly redirected from dependency-related approaches to programs that enhance independence and productivity of people with disabilities, thereby engendering future efficiencies in federal spending.
Congress had directed the Council to develop a list of, based upon annual expenditures and numbers of persons with disabilities served, of major federal programs affecting persons with disabilities. Ten pages of Toward Independence were devoted to providing that list, which included for each of the 45 largest such programs, the annual expenditures and the number of people with disabilities served. Based on the list, the ten largest disability-related programs accounted for over 57 billion dollars in annual outlays, and the 45 listed programs expended over 60 billion dollars per year. The Council’s recommendations in the 10 issue areas addressed in the report were formulated with a focus on their costs and benefits; this was reflected in the detailed topic papers contained in the Appendix section of the report. Thus, for example, the topic paper on Disincentives to Work under Social Security Law contained a section (Paper C, sec. V(C)) on “Costs and Benefits”; on Prevention a section (Paper D, sec. IV(E)) on “Economic Considerations”; on Transportation a section (Paper E, sec. II(G))) on “Cost Issues”; on Housing a section (Paper F, part IV) on “Costs and Benefits”; on Community Based Services for Independent Living a section (Paper G, part VII) on “Expenditures Costs and Benefits”; on Personal Assistance: Attendant Services, Readers, and Interpreters sections (Paper I, secs. IV(D) on “Funding” and IV(E)) on “Cost of Meeting the Demand for Attendant Services.”
We had provided considerable cost/benefits information, sufficient to make the very fiscally conservative Council, including the likes of legendarily conservative Jeremiah Milbank Jr., and with the guidance of Hoover Institution Senior Fellow John Raisian who served as Economic Consultant on Toward Independence, comfortable with the recommendations in the report. I confess to being a bit miffed that I was being asked to provide more economic justification for the Council’s first and primary recommendation for enactment of the ADA, in the midst of all the other ADA-related assignments I was already working on. My annoyance was probably apparent when, at the beginning of my Cost Date memo, I noted that the discussion of the need for additional cost data at the May meeting had been accompanied by a suggestion of “obtaining the services of an economist to locate and develop cost data,” to which I added, “In the absence of such assistance, I have pulled together the data included here on my own,” that, I noted “are certainly far from comprehensive.” Nonetheless, I plowed ahead and assembled 17 pages of bits and pieces of cost figures and related data.
Another item of “stuff for Bob to do” from the May meeting was a compilation of questions and answers about the ADA. I identified 25 categories of questions and provided brief answers that would aid the members of the Council in understanding the ADA and in helping them to respond to basic questions about its origin, purposes, content, implementation, and related matters:
- Introduction of the Bill
- Idea for the Bill
- Council’s Statutory Authority
- Need for the Bill
- Section 504
- Civil Rights Restoration Act
- Comparability to Civil Rights Laws
- Unintentional Discrimination
- Organizations Supporting the Bill
- Potential Opposition
- Cost to Federal Government
- Number of People Covered
- Disability and Poverty
- Types of Disabilities Covered
- Small Businesses
- Fair Housing Amendments Act
- Public Accommodations
- Communication Barriers
- Captioning of Television Programs
- Air Travel
- Mass Transportation
I produced 30 pages of the questions and my responses. I folded into the Qs-&-As paper some of the materials I had developed for the Council on Cost Data and AIDS. While the result was not deep or technically sophisticated (as would be the extensive Qs & As that would later be developed by the Legal Team for use in the 101st Congress), it was well-suited to the needs of Council members at the time, and serves as quite a good primer on the ADA and the rationale in favor of it.
Toward the end of July, Paul Hearne was appointed Executive Director of the Council; former Acting Director Ethel Briggs was named Deputy Executive Director. Paul, an attorney and long-time disability rights advocate, had previously served as the director of Just One Break, Inc. (JOB) in New York City, the nation’s first private job placement agency for people with disabilities. Our new Executive Director assigned Andi and me to develop an outline for a special report to the Congress and the President due by the end of March 1989. On August 31, 1988, we provided Paul a five-page outline for what we described as “a fairly ambitious report.” The outline was Andi’s last work product for the Council; she had resigned from her position at the Council, effective August 31, the day we submitted the outline.
Though it was largely unnoticed at the time, Representative Major Owens did something remarkable on August 11, as Congress was about to recess until after Labor Day. He stood up on the floor of the House of Representatives, was recognized by the Speaker, and gave an impassioned speech about keeping the ADA at the top of the congressional agenda, opening with a plea, “Let us not let it get lost.” His address was short – it would comprise less than two-thirds of a page in the Congressional Record – but powerful. A veteran civil rights activist, he declared that the ADA “represents the next giant step in the American civil rights movement. This legislation grants full rights to Americans with disabilities.” He added that “this bill places the moral indignation of our just society and the authority of our Government squarely behind persons with disabilities who are seeking their full rights.”
He provided a brief summary of the coverage and content of the ADA, and explained how he had created the Task Force on Rights and Empowerment to “guide the journey toward full empowerment for Americans with disabilities begun by introduction of this measure.” He indicated his expectation that evidence of discrimination and other information collected by the task force “will be invaluable to the House Committee on Select Education and to the Congress as a whole,” as it considers the ADA bill and subsequent legislation to “implement the integration of people with disabilities into the productive mainstream of society.” He observed that the protests at Gallaudet were based on outrage over what he termed “a long-neglected cesspool of discrimination against people with disabilities.” Elaborating, he said, “That explosion of outrage is a graphic example of what can happen as a result of decades of tolerance of such discrimination, and of the refusal to accept the empowerment of people with disabilities. Nationwide there is a ferment within the ranks of persons with disabilities.” He closed with an exhortation that “the next great step forward for civil rights should not be a difficult one. Remember the message of Gallaudet. That message is empowerment for people with disabilities.”
Throughout the summer and into fall of 1988 I had been very busy, principally on activities relating to the ADA bill. Meanwhile, a related piece of legislation, the Fair Housing Amendments Act (FHAA) bill, had continued to make its way through Congress, and I was involved in a variety of substantive activities in relation to that legislation. As examples, in a June 24 weekly report summarizing my activities, those related to the FHAA included the following:
(a) Developing a draft of Committee report language regarding the disability provisions;
(b) Critiquing draft Committee report language prepared by Committee staff, identifying problematic language suggested by the housing industry that creates a waiver of accessibility requirements, and suggesting alternative language;
(c) At the request of Congressional staff, drafting floor statements for Representatives Major Owens (Chairman of the Select Subcommittee on Education and Civil Rights) and Hamilton Fish (Senior minority member of the Committee on the Judiciary); and
(d) Briefing staff of Representative Bill McCollum regarding the Council’s position on the disability provisions, and discussing the advantages of the universal accessibility approach over an amendment they were considering to create a percentage of totally accessible units.
Remarkably, the House of Representatives passed its version of the FHAA on June 29, and the Senate its version on August 2. On September 13, President Reagan signed the bill into law as Public Law 100-430. On October 11, I sent the Council a memorandum describing the passage of the FHAA and summarizing its provisions relating to disability. In the memo, I observed that Public Law 100-430 was the first major, substantive federal civil rights law in which disability was added to race, color, sex, religion, and national origin as prohibited grounds of discrimination. I noted that it imposed accessibility standards upon the design and future construction of housing and made failure to comply with those standards an unlawful act of discrimination.
It also required housing providers to make “reasonable accommodations” when necessary to afford a person with a disability an equal opportunity to use and enjoy housing; it was the first federal statute to expressly create a reasonable accommodation requirement in statutory language, although it had previously appeared in some regulations and court decisions. The FHAA not only prohibited discriminating because of a person’s disability, but also discriminating against a person because of that person’s association with a person with a disability; thus it became illegal to refuse to rent or sell a dwelling to someone because that individual has a parent, child, roommate, friend, tenant, spouse, paramour, or other associate who has a disability. The prohibition of discrimination because of association with a person with a disability was important because of remaining fears and misconceptions that disabilities are “contagious,” and some people’s feelings of discomfort, unease, and aversion upon encountering people with disabilities.
These FHAA provisions were all very much in line with the Council’s recommendations. When Lex Frieden and I were first approached by Jean Maguire and Pat Wright back in March of 1987, and asked whether the Council would support the addition of disability (“handicap”) to the Fair Housing Act, I described the Council’s position on housing issues set out in the recommendations in Toward Independence, and said that I believed that the Council would support such a change, with three ifs: if the legislation had a workable definition of disability, if it mandated reasonable accommodations, and if it called for elimination and prohibition of architectural and communications barriers. Public Law 100-430 satisfied all three of these conditions, and then some. The passage of the FHAA made the housing provisions of the ADA bill mostly redundant, an issue that would need to be redressed as the ADA legislation moved forward, but that extraction would be the happy result of a legislative victory in proscribing disability discrimination in housing.
 134 Cong. Rec. S 5107-5108 (Daily Ed. April 28, 1988).
 Brian Gooney, “Handicapped Child’s Access to Zoo Disputed,” The News Tribune (Woodbridge, N.J.), July 13, 1986.
 Joseph Shapiro, “A New Common Identity for the Disabled,” The Washington Post, March 29, 1989, https://www.washingtonpost.com/archive/lifestyle/wellness/1988/03/29/a-new-common-identity-for-the-disabled/1560359a-2b64-48d2-b9a1-b701d198a452/
Shapiro would later reprise the zoo exclusion story in his excellent, pioneering book, No Pity: People with Disabilities Forging a New Civil Rights Movement (1993) at p. 25.
 134 Cong. Rec. S 5109 (Daily Ed. April 28, 1988).
 Id. at S 5110.
 Id. at S 5113-5118.
 Id. at S 5113-5114.
 See, Robert Burgdorf, “The Americans with Disabilities Act: Analysis and Implications of a Second-Generation Civil Rights Statute,” 26 Harvard Civil Rights – Civil Liberties Law Review, 413, 501-502 (1991). See also, e.g., 130 Congressional Record (March 12, 1984) 5182 (Remarks of Rep. Bilirakis).
 U.S. Commission on Civil Rights, Extending Equal Opportunity Law to Congress (1980).
 134 Cong. Rec. E 1307-1311 (April 29, 1988).
 National Council on Disability, National Council on Disability: 20 Years of Independence (2004) at p. 18.
 National Council on Disability, Equality of Opportunity: The Making of the Americans with Disabilities Act, p. 67 (1997).
 Letter from Justin Dart to Senator Lowell Weicker, August 1, 1988, p. 1.
 National Council on the Handicapped, National Policy for Persons with Disabilities … Executive Summary, p. 1 (pamphlet, 1984). In the National Policy for Persons with Disabilities document itself, the Council’s estimate of the people consulted was 2,000.
 National Council on Disability, Equality of Opportunity: The Making of the Americans with Disabilities Act, p. 76, n. 14 (1997).
 Robert Burgdorf & Marcia Pearce Burgdorf, A History of Unequal Treatment: The Qualifications of Handicapped People as a "Suspect Class" Under the Equal Protection Clause, 15 Santa Clara Lawyer 855 (1975).
 National Council on Disability, Equality of Opportunity: The Making of the Americans with Disabilities Act, Appendix E, pp. 211-222. The report can be found on the Council’s website at https://ncd.gov/publications/2010/equality_of_Opportunity_The_Making_of_the_Americans_with_Disabilities_Act The electronic copy, however, does not include Appendix E.
 480 U.S. 273 (1987).
 House Report 100-711, p. 22, n. 55).
 National Council on Disability, Toward Independence (1986) at pp. 55-65.
 Id. at p. vi, 12.
 134 Cong. Rec. H 6969, August 11, 1988 (remarks of Representative Owens).