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Toward Independence and the Vision of an ADA - Part 3

Drafting the Topic Papers Including One on Equal Opportunity Laws

Lex assigned the responsibility for initial drafting of the topic papers to Council staff and fellows, a couple of consultants, and Council member Michael Marge. The Council’s Adult Services Specialist, Ethel Briggs, and Children's Services Specialist, Naomi Karp, collaborated on the Employment paper. Part of the Lex/Justin Texas independent living circle, consultant Margaret “Peg” Nosek, Professor in the Department of Physical Medicine and Rehabilitation and Executive Director of the Center for Research on Women with Disabilities at the Baylor College of Medicine, took on some heavy lifting by taking charge of both the Independent Living paper and Personal Assistance: Attendant Services, Readers, and Interpreters. Council Fellow Laura Rauscher drafted the paper on Transportation; I was initially supposed to co-author the paper with Laura, but she did such a good job on it that it soon became clear that she did not need my help. Because of his special interest in two particular topics, Council member Dr. Michael Marge volunteered to develop the paper on Prevention of Disabilities, and to team up with Naomi Karp on the Educating Children with Disabilities paper. Consultant Betty Defay joined Council Fellow Janet Anderson on Disincentives to Work under Social Security Laws. Janet and I worked together on the Housing paper.

Dealing with the topic of Coordination required some delicacy because a small group of Council members believed that every law and program affecting people with disabilities should be combined under a single federal super-agency, an approach that I considered simplistic, naïve, impractical, and antithetical to integration. Trusting to his diplomatic skills and power of persuasion, Lex took responsibility for the Coordination paper himself. Predictably, Lex assigned the Equal Opportunity Laws topic to me (and wouldn’t I have screamed bloody murder had he not?).

The process of developing the topic papers was highly collaborative and consultative. As a foundation for developing the report, NCD had made significant efforts to obtain grassroots input, much of it garnered from consumer forums at Council meetings plus Justin’s public forums around the country. Starting with information and ideas from consumers, disability issues professionals, and documentary sources, as well as the input of the members of the Council, the drafters of the papers sketched out descriptions of issues, documented problems, identified possible approaches for addressing such problems, and developed draft recommendations and rationales for them.

Recognizing that preparation for NCD meetings and consumer forums, and staffing the various committees of the Council routinely occupied the better part of the staff’s time, at the April meeting at which the Council settled on the 10 topic areas, Lex convinced Council members to clear the decks and focus almost exclusively on the report. Working groups on the various topics met in Washington during May and June. Drafting sessions involving Council members, staff, and consultants were held on June 13-14 and July 17-18. Justin expressed gratitude to “all members of the staff for cheerfully contributing many overtime hours.” Ongoing efforts by the staff, consultants, and Council members were augmented by ongoing input from numerous outside groups and individuals. As the topic papers went through drafts and redrafts, Lex made himself available as a conduit for suggestions and feedback from all directions; he consulted frequently with disability organization representatives and developed a list of some 50 people at the grass roots level with whom he spoke at least once a month. The individuals designated for developing the various topic papers bore the front-line responsibility for digesting and incorporating (or sometimes sidestepping) the advice and comments we received, and the results were repeatedly and thoroughly scrutinized by the Council members and numerous others.

Although Lex would try from time to time to systematize the process of producing the topic papers by establishing due dates for outlines, summaries, or lists of recommendations, the topics’ dissimilarity, idiosyncrasies, and varying levels of complexity, along with differences in productivity, experience, and levels of mastery of the individual writers, caused the papers to be developed at widely different rates. The paper that turned out to be the most significant in the long run was the first one written – Equal Opportunity Laws. The reason it moved forward before the others was that I had a considerable head-start over those assigned to do the other papers. After all, I had been dreaming of a comprehensive disability discrimination law since the early 1970s, and had analyzed, written about, and litigated under existing laws and court decisions in the years since. In particular, my work on the Accommodating the Spectrum of Individual Abilities report at the Civil Rights Commission and in writing the Statutory Blueprint article with Chris were ideal preparation for developing the Equal Opportunity Laws (EOL) paper for the Council. The last section of the Blueprint, titled “What Should a [Disability] Antidiscrimination Statute Contain?” was my principal starting point when I began work on the EOL paper. It featured a description of the shortcomings in the scope and content of existing disability rights laws, and recommended how these deficiencies ought to be remedied. Accordingly, my earliest conceptualization and outlines of the EOL paper centered on problems with the scope, language, interpretation, and enforcement of current disability nondiscrimination laws. And crafting legislative proposals on this topic began with ideas for solving the problems with the laws in place, including by passage of a new major disability civil rights law.

At this time, Chris Bell was still stuck (quite discontentedly) at the Civil Rights Commission. After leaving the Commission for my position at the Council, I had kept him apprised of the work I was doing, and often picked his brain for ideas and suggestions, and got him to serve as a sounding board for my own. At the end of May 1985, Chris and I had a brainstorming session about what we would include in an ideal disability nondiscrimination law, taking our Statutory Blueprint proposals a step further with more specificity and elaboration. We batted around all sorts of ideas, insights, and possibilities, with the result that I left with five pages of sketchy and somewhat disorganized notes. Both of us having been influenced by the “get back to first principles” analytical approach of my former and Chris’s current supervisor, Jack Hartog, we began by focusing on the ultimate objective of a civil rights law for people with disabilities. We agreed that the fundamental goal was to stop discrimination – to avoid negative and unfair treatment of individuals because of actual or perceived impairments. And we agreed that a key implication of such an approach was that a disability nondiscrimination law should focus on prohibiting conduct that unnecessarily disadvantages a person because of negative perceptions of physical or mental impairment. It should not center on making fine distinctions about how much disability a person has nor involve elaborate, demanding definitions of what disability is (my notes say “no need to define”). The law should make it clear that persons or entities within its scope are required to justify any exclusion or disadvantage based on impairment. We sketched out some of the burdens of proof that would flow to employers and others subject to the law who engaged in negative conduct related to disability, based on a premise that those who disadvantage others because of impairment should be required, as we put it, “to jump through some hoops” to support their actions.

We discussed the need for administrative complaints and court actions for people who allege they have suffered discrimination, and the legal remedies that should be available against those shown to have discriminated, including, in addition to ordinary legal damages (injunctions and monetary damages), fines and penalties that might be used to defray costs of enforcement activities, and cutoffs of government funds to offending federal grantees and contractors. We discussed authorizing courts and enforcement agencies to order self-help in situations where a violator would not stop or correct its discriminatory actions by a deadline, after which the complainant could correct the violation on his or her own and charge the violator for the costs of doing so.

Given that reasonable accommodation was a major focus of our Accommodating the Spectrum report, we naturally spent some time considering that critical component of nondiscrimination. We were of the opinion that before a covered entity, such as an employer, rejected a person from a job or other opportunity on account of an impairment, or turned down the request of a person with a disability for a reasonable accommodation, the covered entity should be required to consult with people who are knowledgeable about accommodations (including people with disabilities, disability consumer groups, and relevant professionals, such as an environmental engineer). Then, the covered entity ought to have to list the accommodations considered and give reasons why each of the accommodations not chosen was not appropriate or infeasible. I believe that these suggestions, which came mostly from Chris, were the germ of the idea of the “interactive process” for deciding upon reasonable accommodations that EEOC and the courts would later impose as a requirement under the ADA and Section 504. We suggested, in passing, that unlike the looser, broader coverage of the basic nondiscrimination requirement, eligibility for a reasonable accommodation would need to be more narrowly defined.

The field of ergonomics, concerned with approaches to design to optimize human well-being and productivity, had become increasingly prominent in the public eye at the time, and Chris threw out the idea that barrier removal and reasonable accommodation could be considered ergonomic. While typically thought of as the study of designing equipment and devices to fit the human body and abilities, primarily to maximize function and prevent repetitive motion and other injuries, he posited that ergonomics could and should include design geared toward optimizing well-being and productivity of all people, including those with impairments. On the subject of removing environmental barriers, another leap led Chris to suggest that maybe there should be a “National Environmental Policy Act for People with Disabilities.”

On a more specific and mundane level, the two of us agreed that discrimination included the exclusion of people because of covered entities’ belief that their impairments might increase insurance and workers’ compensation costs. We spent some time talking about possible defenses to discrimination claims, such as business necessity, fundamental alteration to an enterprise, safety and health concerns, and “bona fide occupational qualifications (BFOQs).” Our general approach was that such defenses should be measured and realistic so as not to undercut the basic antidiscrimination thrust, but we did not delve into the details as we had in the Accommodating the Spectrum of Individual Abilities report and the Statutory Blueprint article. Finally, as in those two documents, we discussed traditional civil rights standards, particularly under Title VI and VII, and when they were workable and when not in the context of disability discrimination. One thing we underscored was that in most situations traditional civil rights standards operate on an assumption that if you remove prejudice and discrimination from the equation, people are alike and will fare well when treated identically. This assumption does not work well in regard to some aspects of disability discrimination, such as the need for barrier removal and reasonable accommodation. Chris and I wound up our colloquy by musing on how we human beings are all alike, and all different, and all deserve to be equal. As best as I can reconstruct from my cryptic notes, what we were saying was to the effect that we are all alike (in our common humanity and basic needs) and all different (in our individual, unique personalities and characteristics), and still we can all be treated fairly and equally if we accord one another respect and amity exercised with common sense. A disability nondiscrimination law should put in place legal standards to ensure that such fairness and equality are realized in our society.

While certainly not all of our ideas and flights of fancy came to fruition (the ergonometric and environmental characterizations of disability accessibility, for example, never caught on, and no “National Environmental Policy Act for People with Disabilities” has ever been introduced in Congress), the matters that Chris and I explored together give a feel for the Jack-Hartog-inspired elemental level of conceptualization and analysis that would underlie the development of the EOL paper.

From my earliest outlines, I decided that the EOL paper should have an Introduction followed by sections on problems with the scope of coverage of existing disability rights laws and on problems with the language, interpretation, and enforcement of such laws. Fairly early in the process, Justin Dart sent me four paragraphs of his suggestions of potential language for the paper. Exemplifying the declamatory style Justin often used, his first paragraph began as follows:

Disability – like birth, death, illness, accident, pain, happiness and sadness – is a normal part of the human process. A majority of individuals who survive to adulthood will experience some form of significant temporary or permanent disability during their lifetimes. That a certain number of people will have disabilities is just as predictable and normal as that there will be short people, tall people, Black people, young people and elderly people. Yet millions of Americans are excluded from the productive mainstream of society and from the good life for which this nation is justly famous simply because they are experiencing a perfectly normal condition about which there is massive traditional prejudice. This situation is morally, legally and economically unacceptable.

I thought these lines articulated some important points, and I incorporated the first three sentences nearly verbatim, along with a paraphrased version of the fourth sentence, as the second paragraph of my draft of the paper. I began the paper with a discussion of the importance of being able to pursue opportunities freely and fairly, including the statement that “[e]qual opportunity is a cornerstone of the legal, political, and economic systems of the United States – the Land of Opportunity,” and, echoing Justin, that “Americans with disabilities have often not been allowed access to the opportunities for which our society is justly famous.” Drawing upon themes sounded in Accommodating the Spectrum, I identified the two primary alternative approaches to disability – custodialism and integration – and described the American government’s endorsement of access to opportunities, full participation, and integration. I contrasted these announced goals with the reality of severe and pervasive discrimination on the basis of disability. After giving a capsulized summary of the major federal laws prohibiting disability discrimination at the time – Sections 504, 503, and 501 of the Rehabilitation Act – I declared that the EOL paper “examines the current status of disability-related equal opportunity laws and identifies gaps in coverage, shortcomings and inconsistencies in interpretation and application, and deficiencies in enforcement.” In response, the Council would make recommendations “for the enactment of comprehensive and effective equal opportunity laws for people with disabilities.” Around the same time that I wrote this introductory section, I crafted what would become the first and most consequential recommendation in the EOL paper:


The Council recommends the enactment of a comprehensive law requiring equal opportunity for individuals with disabilities, with broad coverage and setting clear, consistent, and enforceable standards prohibiting discrimination on the basis of handicap.

At the time, knowing that people with disabilities had by and large rejected the terms “handicap” and “handicapped” in referring to ourselves and our impairments, I had otherwise stopped using those terms, but retained them as terminology for referring to “handicap discrimination” and “discrimination on the basis of handicap,” as in the final words of the recommendation. I thought it was fitting to use the favorable terms for the people and the disfavored terms for the discrimination, particularly in the legal context where “handicap discrimination” had become something of a term of art in legal contexts. The distinction I drew never really caught on and was ultimately discarded.

Subsequent recommendations presented in the paper expanded on what the law should contain, what it should cover, and how it should be enforced. The paper called for the Architectural and Transportation Barriers Compliance Board (“Access Board”) to be given express authority to set minimum accessibility standards for the removal of architectural, transportation, and communication barriers; for enactment of an enforceable Bill of Rights for People with Disabilities; for expansion of the Developmental Disabilities Protection and Advocacy System to provide advocacy services to people with all types of disabilities; and, a pet idea of mine, for the federal government to be directed to use its leverage as a consumer of goods and services to set standards and timelines for businesses and companies it does business with to make their goods, services, and facilities accessible to and usable by people with disabilities on a nondiscriminatory basis.

Continue on to Part 4: Kent Waldrep and the Name “Americans with Disabilities Act”