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To the National Council - Part 4

President Reagan’s Council, Key Members, and the National Policy for Persons with Disabilities

After taking office in 1981, President Ronald Reagan chose to replace the members of the Council with his own appointees. In March 1982, he announced his intention to name Joe Dusenbury, former commissioner of the South Carolina Vocational Rehabilitation Services and president of the National Rehabilitation Association, to be chairman of the Council. In October, the Senate confirmed the appointment of Dusenbury and 12 other Reagan nominees.[1] In addition, Nanette Fabray MacDougall was held over from the pre-Reagan Council, perhaps because of her Hollywood connection with the President. In March 1983, President Reagan nominated R. Budd Gould, a Montana state legislator who had become blind from diabetes, to fill the final, fifteenth slot on the Council. Upon assuming the chairmanship of the Council, Joe Dusenbury appointed two vice chairpersons – Justin Dart and Sandra Parrino, both of whom would later play important roles in facilitating the Council’s advancement of the ADA proposal.

Justin Dart Jr. was born in Chicago in 1930 to moneyed, prominent, hard-driving, fiercely ambitious, flamboyant, unhappily married parents. His grandfather on his mother’s side was the founder and patriarch of the Walgreens Drugstore chain. His father, Justin Dart Sr. ("Boy Wonder" of the drug store industry), married into the Walgreen fortune, went to work as an executive at his father-in-law’s company, and, after divorcing his wife (Justin Jr.’s mother) and leaving Walgreens, took control of United Drug Company, eventually turned it into Rexall Drug, and made it part of his international conglomerate called Dart Industries. A staunchly conservative Republican, Dart Sr. was one of the leaders of Ronald Reagan’s “kitchen cabinet,” an influential group of wealthy supporters and advisors who helped Reagan ascend to the governorship of California and then to the White House, and reportedly helped choose the members of Reagan’s first cabinet. Justin described his mother, Ruth Walgreen Stephan, as “a flaming liberal feminist writer … [who] published an avant-garde magazine.”[2] His parents divorced when he was 9. He contracted polio when he was 18 and nearly died; subsequently he was left with paralyzed legs and used a wheelchair.

At the time Justin Dart Jr. was appointed to the Council, his disability/independent living credentials related principally to service in Texas, although previously he had organized bowling programs for people with disabilities in Mexico, and basketball and marathon racing for athletes with disabilities in Japan. In addition, he and his devoted third wife, Yoshiko, had provided foster parenting services to Japanese girls, many of whom had disabilities, in what one author has called “the Darts’ kitchen-table independent living program.”[3]

Upon moving to Texas in 1978, he initially became involved with local organizations in Austin, Texas, including MIGHT (Mobility Impaired Grappling Hurdles Together) and, as co-founder, the Austin Resource Center for Independent Living. He later served on the Mayor’s Committee on the Handicapped and was a full-time volunteer for, and had a stint as chairperson of, the Texas Governor’s Committee on Employment of the Handicapped. Republican Governor Bill Clemens also appointed him to the Governor's Task Force for Handicapped Citizens, which articulated a list of long-range goals and issued a 1982 Monitoring & Reporting Project report. In addition, Justin and Yoshiko had joined Dr. 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, in co-authoring (along with Yayoi Narita) an ambitious, somewhat esoteric paper titled A Philosophical Foundation for the Independent Living & Disability Rights Movements that was printed in August of 1982 by Lex Frieden’s Independent Living Research Utilization Project in Houston.

Dusenbury’s other vice chairperson, Sandra Swift Parrino, was a parent advocate who had been active with the New York State Republican Committee and worked with the Westchester Committee for the Election of President Reagan. Her involvement with disability issues had begun when her 14-month-old first son, Paul, displayed symptoms of a mysterious, progressive neuromuscular impairment. The condition, which has never been definitively diagnosed, not even by the experts at the Rusk Institute of Rehabilitation Medicine, would cause Paul to regress from walking to crawling, and losing his speech skills.[4] The personal experience of advocating for her son led Sandy to become a representative of parents of children with disabilities, serving as a panelist, speaker, lecturer, and liaison for meetings and symposia. By the time she was appointed to the Council, Parrino had served as a member or officer of various local and New York disability-related organizations, and had been director of the Office of the Disabled in Ossining and Briarcliff Manor, NY.[5] Though lacking federal legislative experience, she would prove to have considerable passion for disability issues close to her heart, and considerable chutzpah that she displayed when she was accorded positions of leadership.

The Reagan-appointed Council continued to pursue its statutory obligations of monitoring the activities of the National Institute for Handicapped Research, the Rehabilitation Services Administration, the Special Education Program of the Office of Special Education and Rehabilitation Services, and the Interagency Committee on Handicapped Research. In March 1983, the Council issued a substantial Annual Report describing these and other activities it had performed during the prior fiscal year. The report also noted that the Council was developing a “National Policy Statement” on disability for review at a future meeting of the Council and subsequent public discussion. The policy statement was the most prominent product of the Council under Chairperson Dusenbury’s leadership.

The idea of a Policy Statement on disability was reportedly inspired by a meeting Justin Dart had with other disability activists in Austin, Texas, in 1981, at which the group discussed the development of a list of proposed disability policies to present to the Governor. When he joined the Council in the next year, Justin suggested to Dusenbury the possibility of the Council issuing a “National Policy for Persons with Disabilities.” Dusenbury liked the idea, and he and Dart were able to get preliminary Council approval to produce a draft of such a document, with the understanding that it would ultimately be presented for discussion, revision, and a vote of approval or disapproval. The two agreed that the document would have much more credibility and acceptance if it was developed with broad grassroots input. To that end, Dart volunteered to conduct what the Council described as “drafting meetings” around the country. Taking the money for travel and meeting expenses from his own wallet, he journeyed to each of the fifty states and the District of Columbia, where he consulted with “more than one thousand distinguished members of the disabled community, government, the service provider professions, and the private sector,”[6] to solicit ideas and comments about what should be included in the Council’s policy statement. In the various locales he visited, Justin afforded people the chance to review the current iteration of the document, so the final product truly reflected countrywide perspectives. This would turn out to be only the first nationwide barnstorming tour Justin would make; he would later undertake other such national expeditions to convene what came to be called “consumer forums” for soliciting grassroots input and support in the process of the Council proposing and advocating for passage of the ADA, and laying the foundation for organization of a national grassroots disability coalition.

The text of the National Policy for Persons with Disabilities that resulted from this collaborative drafting process was 17 pages long, and announced the following overall national policy declaration:

It is the policy of the government of the United States to enable children and adults with disabilities to achieve their maximum quality of life potential, self-reliance, independence, productivity and equitable mainstream social participation in the most productive and least restrictive environment.

Preliminarily, the statement stressed the importance of individual responsibility and self-determination, of barriers that keep people with disabilities from exercising basic human rights, and of the potential savings of billions of dollars of federal expenditures that might be realized by refocusing policies and programs from dependence to independence and productivity. It then provided statements of policy in 22 categories.[7] The policies presented were general and aspirational – sketching what ought to happen in an idyllic world.

The document came down solidly in favor of self-reliance, self-direction, and personal responsibility, declaring that “persons [with disabilities,] to the maximum extent possible should have the principal responsibility to solve their own problems and fulfill their potential,” while also recognizing that the federal government “has primary responsibility to guarantee and enforce the rights of [people with disabilities] according to the letter and spirit of the United States Constitution and of applicable laws and regulations.” In the section of the policy statement titled “Law,” the Council called for “a comprehensive, internally unified body of disability-related law which guarantees and enforces equal rights and provides opportunities for individuals with disabilities.” The section became more concrete and specific, listing, as examples of such laws, Title V of the Rehabilitation Act, the Education of All Handicapped Children Act, and the Developmental Disabilities Assistance and Bill of Rights Act. It also decreed that Congress and the President should “act forthwith to include persons with disabilities in the Civil Rights Act of 1964” – an admirable sentiment, but one which struck me as simplistic and insufficient when I read it, primarily because of problems Chris and I had written about in the Statutory Blueprint, including the need to delineate what constitutes discrimination on the basis of disability rather than just to declare merely that disability discrimination is prohibited. In what I would come to recognize as a vintage Dart rhetorical flourish, the Council declared that "[i]n matters of fundamental human rights, there must be no retreat.

On August 29, 1983, Justin presented the draft document to the Council. He would later recount that some members reacted by saying something along the lines of, “This is nice, Justin, but we’ve got to get rid of this radical language and some of these radical proposals.” When a few other council members nodded in agreement, Chairperson Dusenbury stood up, paused for dramatic effect, and then said (as quoted by Justin), “Ladies and gentlemen, this document was written by the disabled people of the United States. I want to hear a motion to approve this document and I don’t want you to change a single word.”[8] After a moment of stunned silence, a motion to approve was offered, and then passed unanimously, without any alterations to the document.

The Council issued the National Policy for Persons with Disabilities with little fanfare. Dusenbury was forced to find private funding for printing and distribution of the document when government funding was not forthcoming. Printed copies were sent to the White House, members of Congress, and some state legislators, with little apparent impact. President Reagan would publicly endorse the policy statement, albeit somewhat belatedly, on January 5, 1984, when he sent a letter to the Council acknowledging receipt of the document and declaring: “The ‘National Policy for Persons with Disabilities’ sets forth both short- and long-term goals for our nation in a commendable manner. You can be sure that I will cooperate fully as we all seek the achievement of these goals.”

Privately, however, the Reagan Administration was reportedly not at all happy with the document, and the White House asked Dusenbury to step down from his position as chair, purportedly in order to institute a one-year term for the chairperson (which no subsequent chairperson would ever be limited to). On September 18, less than three weeks after the National Policy was issued, the President named Sandy Parrino, previously a vice chairperson of the Council (along with Justin Dart), as the new chair. Dusenbury had also earned the displeasure of the Reagan administration by refusing to support its introduction of legislation to disband the vocational rehabilitation program, but Justin believed that the National Policy was a major sore point that triggered his unseating as chairperson of the Council.

At the Council meeting on December 12, 1983, new Chairperson Parrino honored outgoing Chairperson Dusenbury and presented him, on behalf of the Council, a certificate of commendation and a silver tray. At the same ceremony, Lex Frieden, described, amazingly, as “a Texas cattleman,” presented Dusenbury a Texas cowboy hat on behalf of the Coalition of Texans with Disabilities.[9] Parrino also facilitated the procurement of the letter from the President acknowledging and thanking the Council for sending the National Policy, and she supported the development of a ten-page leaflet that presented the President’s letter with an Executive Summary of the National Policy to garner additional attention for the document.

Prior to stepping down as chairperson, Dusenbury overstepped Reagan Administration restrictions in another way. Ignoring the Department of Education's insistence that he have no direct contact with Congress, he and then Executive Director Harvey Hirschi lobbied members of Congress to convert the Council to an independent agency, with the aim of releasing it from constraints of, and meddling by, the Department and other forces within the Administration. In Dusenbury’s view, Congress wanted the Council to be unfettered in giving its policy advice, but some members of the administration “refused to allow us much leeway, and it became apparent that the Council must become independent if it were to succeed in fulfilling the congressional mandate.”[10]

Continue on to Part 5: Reinventing the National Council

[1] The 13 were as follows: H. Latham Breunig, Ph.D.; Robert V. Bush; Justin Dart Jr.; Joe S. Dusenbury; John S. Erthein; Hunt Hamill; Marian N. Koonce; Carmine Lavieri; Michael Marge, Ed.D.; Sandra Swift Parrino; Roxanne S. Vierra; Henry Viscardi Jr.; and Alvis Kent Waldrep Jr.

[2] Justin Dart, “He Empowers Us. Who Empowered Him?” New Mobility, Vol. 9, No. 54, p. 37 (Mar. 1998).

[3] Jean Dobbs, “And Justin for All,” New Mobility, Vol. 9, No. 54, p. 34, 36 (Mar. 1998).

[4] Sandy Swift Parrino, A Parent’s View & Walk in my Shoes (Mar. 5 & Feb. 28. 2012), at http://sandyswiftparrino.wordpress.com

[5] National Council on the Handicapped, Annual Report of the National Council on the Handicapped, p. 41 (March 1984).

[6] 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.

[7] The following were covered: 1) Areas of Responsibility, 2) Education, 3) Attitudes, 4) Responsibility of Disabled Persons, 5) Employment, 6) Demographic Information, 7) Single Point of Entry, 8) Law, 9) Accessible Communities, 10) Fiscal Responsibility, 11) Independence Incentives, 12) Research, 13) Prevention, 14) Coordination, 15) Evaluation, 16) Private Sector Involvement, 17) Volunteers, 18) Qualified Personnel, 19) Continuum of Support Services, 20) Rural Areas, 21) Ethnic and Social Minorities, and 22) International Cooperation.

[8] Justin Dart, “He Empowers Us. Who Empowered Him?” New Mobility, Vol. 9, No. 54, p. 37 (Mar. 1998).

[9] National Council on the Handicapped, “Disabled Community Honors Dusenbury,” News from the Council, Vol. 1, Number 2 (February, 1984).

[10] National Council on Disability, National Council on Disability: 20 Years of Independence, p. 7 (2004).