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Toward Independence and the Vision of an ADA - Part 7

Themes and Potential Titles of the Report

If getting a date with Andi was very gratifying and significant for me personally, the cost/benefit information she helped me find proved extremely important in getting the Council members to sign on to many of the recommendations in the report. We wove the data into many of the topic papers, and it was quite persuasive to the Council. As mentioned previously, Jerry Milbank had pledged not to support any calls for federal expenditures that did not involve substantial net economic benefits, but he was quite sincere in saying that he would endorse federal spending if we could demonstrate, in dollars and cents, that it would produce both fiscal and humanitarian benefits. Thus, the economic data helped to unify the various Council members, some of whom had widely different philosophical views, behind the recommendations in the report. Economic benefit tied to increasing opportunities for people with disabilities was certainly a prevalent backdrop of the report and the topic papers.

Given the Council’s strong support for my work on the Equal Opportunity Laws paper and recommendations, with their civil rights underpinnings, another obvious theme for the report was equal opportunity, a concept that was also at the heart of recommendations in other issue areas addressed in the report, including transportation, employment, housing, and education. Other possible themes were suggested by the language of the congressional charge that the Council assess the extent to which federal programs “promote the full integration” of individuals with disabilities, and “contribute to the independence and dignity of such individuals.” Years later, I would reflect on the fact that my old friend Tim Cook, who became the leading proponent for the integration mandate under the ADA, would have loved it if we had chosen “Full Integration” as the central theme of the report. And although “dignity” is certainly a key element in human fulfillment and healthy relationships, I considered it too broad and nebulous an objective to be a theme of the report.

“Independence,” however, had a number of pluses. The word is associated with some of the most revered historical documents, events, and even buildings in America, such as the Declaration of Independence, Independence Day, the American War of Independence (Revolutionary War), and Independence Hall. It has a tradition of interpretation as a legal term, as in “independent contractor,” “independent agency,” “independent clause,” and “independent audit.” In relation to programs serving people with disabilities, the objective of independence has been particularly associated with “independent living services” and “centers for independent living,” and the dynamic efforts of disability activists to achieve control of their lives and choices engendered the Independent Living Movement. Chris and I had included a section on “Independent Living” in Accommodating the Spectrum of Individual Abilities. Lex and Justin were both viewed as leaders in the Independent Living Movement, and the Council’s 1983 National Policy for Persons with Disabilities had declared that the overall national policy of the United States is “to enable children and adults with disabilities to achieve their maximum … independence.” The 1984 Rehabilitation Act amendments had given the Council the responsibility for reviewing and approving or rejecting standards for evaluating independent living services. Independence for individuals with disabilities was a core concern and responsibility of the Council, and the Council had chosen Community-Based Services for Independent Living as one the ten topics the report would concentrate on. Accordingly, along with equal opportunity and economic impact, independence seemed a natural theme for the 1986 report.

As I mulled over ideas for organizing my first take on the summary report, I considered various other thematic slants. One of those, perhaps influenced by the ominous message of the A Nation at Risk report, was that a crisis was coming due to mushrooming disability payment expenditures. This concern, articulated by Frank Bowe and others, centered on the increasing “graying” of the American population, exacerbated by the approaching Baby Boom bulge. Given the correlation of disability with aging, increases in the number of older people would entail a substantial rise in the number of people with disabilities, which would, in turn, lead to unprecedented numbers of people receiving federal disability benefits. In my early musings about the summary report, one of the phrases I jotted down was “the approaching crisis – alternative solutions.” Further reflection led me to realize that this alarmist approach could result in the supposedly looming economic crisis being used to justify throwing people with disabilities out of needed federal programs and services, just as “deinstitutionalization” had been unfairly and disastrously used earlier by some states as a pretext for tossing people out of disability treatment and housing programs and services, leaving them out on the street. Moreover, a focus on the danger around the corner would draw attention away from the fact that the current situation was already dismal and disturbing enough to justify strong remedial steps.

Another time-honored angle for approaching the disadvantaged status of people with disabilities in society is from the perspective of barriers – recognizing that human-made barriers in the architectural, transportation, and communication environment and barriers resulting from attitudes toward physical and mental impairments are at the heart of the problem, and that solving this problem requires eliminating such barriers and avoiding their creation in the future. Accordingly, I put “eradicating barriers” on my themes list.

The domain of the Council and the focus of the report both centered on analysis of federal disability policy and recommendations for improving it; the Council’s core mission was sizing up the state of federal policy in the disability area. In the materials he had drafted for the report, Frank wrote that “[w] hat should be of urgent concern to Congress is the fact that this nation has no policy on disability.” In a subsequent draft, he articulated the sentiment just slightly differently: “[t]he United States has no coherent federal policy on disability.” I disagreed with these statements both factually and strategically. In Accommodating the Spectrum of Individual Abilities, I had written that “[g]overnment bodies at all levels of modern American society have, with relative consistency, chosen full participation as the desired objective for [people with disabilities],” and then cited numerous federal and state laws, and court decisions, designating “full participation,” “equality of opportunity,” and “full integration” as the paramount objectives in regard to disability. The problem as I saw it was not that there was no federal policy, it was that federal laws and programs were too often poorly designed or implemented, or inadequately funded, to carry out the policy. During my preliminary reflections on the summary report, I jotted down, “Many Federal laws and programs affecting persons with disabilities are out of line with our Nation’s declared approach toward citizens with disabilities.” And meshing that idea with the independence and equality themes, I wrote that “Federal laws and programs require significant adjustments to align them with our nation’s declared goals of independence and equality.” I characterized federal disability initiatives and laws historically as having taken an “erratic path” in relation to the stated objectives.

The thematic ruminations reflected in my musings and scribbling served as grist for the mill when I started to consider what name to suggest for the report. At the top of the first page of my initial notes, I wrote my first take on a title: “Toward Independence and Equality for Citizens with Disabilities” (I actually first wrote “Toward Equality and Independence …,” but immediately crossed it out and put Independence before Equality). If I had just proceeded with that title, I would have saved myself a lot of work and hand-wringing. When I developed my first partial version of the summary report during the first week of October, I did use that formulation, but only as an internal section heading. In writing the section with that heading, I did some research that led me to discover that in his original draft of the Declaration of Independence Thomas Jefferson’s famous phrase “all men are created equal” initially read “all men are created equal and independent.” I began the section with the full quotation of the original version and then made the point that “[e]quality and independence have been fundamental elements of the American form of government since its inception.” I also quoted several statements by President Reagan and Congress endorsing concepts of independence and equality of opportunity for people with disabilities.

Despite the heading and content of the section, which would remain unchanged through all the drafts, be officially approved by the Council, and appear verbatim in the final published report, I chose a working title for the report that was derived from my views about federal legislation and programs having done a poor job of fulfilling disability policy objectives: “Erratic Paths Toward A National Goal: An Assessment of Federal Laws and Programs Affecting Persons with Disabilities – With Legislative Recommendations.” This was an unfortunate choice on my part – awkward, oriented toward the past, negative in tone, not at all inspirational, and not related to the direction and recommendations the report was advocating. Nobody really liked it, including, when I looked at it objectively afterwards, me.

I played around with some other title ideas. One of those was a slightly better variation on the “Erratic Paths” idea – “Fulfilling Unmet Promises.” I came up with several bland formulations relating to increasing opportunities for individuals with disabilities, including “Foundations for Opportunity,” “The Roots of Opportunity,” and “Providing Opportunities for Independence.” Combining the “opportunity” wording with the elimination-of-barriers theme discussed above, I titled my next (still incomplete), October 24 draft of the summary report “Eradicating Barriers to Opportunity.” This was an improvement but only a marginal one. I gradually realized that the phrasing lacked elegance and catchiness (the word “eradicating,” in particular, seemed stilted and cumbersome), and the expression stressed getting rid of something rather than promoting or improving anything. I continued to search for a better alternative.

Continue on to Part 8: Analysis of Federal Programs, the Number of the People with Disabilities, and Thwarting the Suggestion that Jurisdiction Over All Federal Disability Matters Should Be Assigned to One Federal Agency