Moments in Disability History 26
Women Leaders of the ADA
Several influential men became regarded as the "grandfathers" or "fathers" of the ADA but, in the battle to obtain support for the ADA, the term "General" is only applied to a single woman, Patrisha Wright. The women presented here, in alphabetical order, represent only a few of the thousands of other women who served in various leadership capacities and were instrumental in securing the passage of the ADA. They all can be considered the "mothers" of the ADA.
Marca Bristo is a pioneer of Chicago's disability rights movement and a former patient of the Rehabilitation Institute of Chicago. Bristo helped launch Access Living, one of the country's first ten centers for independent living.
During the 1980s, as a member of the congressionally appointed United States Task Force on the Rights and Empowerment of Americans with Disabilities, and President of the National Council on Independent Living, she helped draft and win passage of the Americans with Disabilities Act.
Elizabeth M. Boggs, Ph. D., was a parent, nuclear physicist, President of The Arc US, and member of President John F. Kennedy's President's Panel on MR. She was a nationally recognized leader in influencing the development of federal and state policy relating to best practice services and supports for persons with disabilities.
Dr. Boggs was also a founding member of The Arc US in 1950. Working with the International League of Societies for the Mentally Handicapped, she was a principal author of the United Nations Declaration of General and Special Rights of the MR. With Justin Dart, Elizabeth Boggs co-chaired the congressionally appointed Task Force on Rights and Empowerment of People with Disabilities, an important impetus to the passage of the Americans with Disabilities Act.
Lisa Carl was the Tacoma, Washington advocate whose eloquent testimony about being denied entry to her local movie theater impressed Congress and the President. Carl attended the signing ceremony where she met President Bush, who shook her hand and said, "Lisa now will always be admitted to her hometown theater."
Chai R. Feldblum served on Pat Wright's team as a full time negotiator and advocate. While working from 1988-1991 as Legislative Counsel to the AIDS Project of the American Civil Liberties Union,
Feldblum was the lead attorney on the team drafting the ADA. She served as chief legal counsel to the disability community during negotiations and passage of the ADA, and was equally instrumental in drafting and negotiating the ADA Amendments Act of 2008.
In 2010, President Barack Obama nominated Chai Feldblum to serve as Commissioner of the U.S. Equal Employment Opportunity Commission.
Nancy Fulco, US Chamber of Commerce attorney, supported the concept of the ADA, but was a constant public critic of provisions that the Chamber felt would be negative for business. Fulco said, "Small businesses simply do not have the money in the bank." She also complained that the wording of the bill was "…so vague it would encourage an explosion of lawsuits." [Newsday, 9/9/89]
Her critique and subsequent dialogue with supporters of the ADA contributed to strengthening its language and the resolve to pass the ADA.
Despite concerns, the U.S. Chamber worked with the President's Committee on Employment of People with Disabilities to achieve harmonious implementation of the ADA.
Marilyn Golden, Senior Policy Analyst at the Disability Rights Education and Defense Fund (DREDF), was closely involved with the Americans with Disabilities Act throughout all stages of its proposal and passage, and during its implementation. Her involvement continues to this day.
A highly lauded ADA trainer, Marilyn has directed and led numerous in-depth programs on the ADA. She is the principal author of the DREDF publication, The ADA, an Implementation Guide (the "Bluebook"), DREDF's highly respected ADA curriculum.
Pursuant to DREDF's position opposing the legalization of assisted suicide and euthanasia, Marilyn has become nationally prominent in that struggle. She has represented the disability community in many debates and dialogs on the subject, authored articles explaining the issue, and worked to defeat assisted suicide legislation.
Judith E. Heumann got her zest for battle from her mother. As a student at Long Island University, she organized students with disabilities to fight for ramped buildings. In 1970, at the age of 22, she started her own disability rights group, Disabled In Action (DIA), and engaged in political protest.
Summoned by Ed Roberts in 1973 to work at the Center for Independent Living (CIL) in Berkeley, California, Heumann served as Deputy Director of the CIL from 1975 through 1982 and blended her east coast political activism with the independent living movement. Heumann, along with Roberts, would continue to rewrite the history of people with disabilities. Regulations for the implementation of Section 504 of the Rehabilitation Act of 1973 was their defining moment.
The late United States Senator Hubert H. Humphrey worked tirelessly to secure passage of legislation that included disability anti-discrimination rights. In 1971, two years before Section 504 was enacted, he attempted to push through such language as an amendment to the 1964 Civil Rights Act but was encouraged by his colleagues to include his additions in the Rehabilitation Act of 1972 draft.
Opposed to provisions regarding independent living, President Nixon twice vetoed Section 504. While Humphrey's independent living language was removed, his anti-discrimination language, with wording copied straight out of the Civil Rights Act of 1964 ruling out discrimination in federal programs, remained and was added to the Rehabilitation Act of 1973. Section 504 was then thought to be no more than a legislative afterthought. However, Nixon signed it.
Roberts and Heumann recognized the significance of the 504 language, as did the Ford administration that stalled the issuance of final regulations. The Carter administration's reluctance to implement the regulations, despite a campaign promise to do so, prompted the "Sign 504" campaign and sit-ins by people with disabilities in Washington, DC and San Francisco. The San Francisco sit-in marked the political coming of age of the disability rights movement. Another civil rights movement was underway.
Roberts and Heumann are credited for organizing the San Francisco sit-in. Roberts, then California's Director of Rehabilitation, showed up several times and gave his official blessing to the sit-in. Heumann worked with demonstrators to get messages and information to those outside the building, and gave tearful testimony before a congressional hearing triggered by the sit-in.
On April 28, 1977, the Carter administration caved in to the protest and signed the regulations without changes.
Heumann and Roberts recognized Section 504 of the Rehabilitation Act of 1973 as the first civil rights statute for persons with disabilities, paving the way for the 1990 Americans with Disabilities Act.
Jennifer Keelan became the central media image for the disability movement. Eight year old Keelan, struggling forward on her hands and knees up the steps to the Capitol, would be the one photographic image from the ADA fight to register in the public memory.
Numerous observers questioned ADAPT's tactic of crawling up the Capitol steps and particularly the inclusion of an eight year old. As one of the 60 people who participated in "the Capitol Crawl," Keelan was already experienced. She was first arrested at age seven with her mom, Cynthia, at a demonstration in Montreal.
Jennifer Keelan reflects on her "Capital Crawl" from "It's Our Story"
Arlene B. Mayerson has been the Directing Attorney of DREDF since 1981 and played a pivotal role in the drafting of the ADA. In a largely behind-the-scenes capacity, she led a legal team that advised Congress, drafted the legislative language, prepared congressional testimony for others, testified before Congress herself, and prepared educational materials for the national disability community.
She also filed comments on the ADA regulations for more than 500 disability rights organizations.
Her intellectual prowess, vision, and tenacity strengthened the law in untold ways and shaped the debate altogether in certain key areas. She is the author of a comprehensive three-volume treatise on the ADA, Americans with Disabilities Act Annotated-Legislative History, Regulations & Commentary (Clark Boardman Callaghan, 1994), which sets forth the legislative history and regulations for each provision of the ADA.
Sharon Mistler, Executive Director, Endependence Center of Northern Virginia, helped coordinate nationwide ADA advocacy efforts and was the chief organizer of the July 26, 1990 ADA signing ceremony picnic across the street from the White house. She was a central figure in the enactment of Section 504 of the Rehabilitation Act.
In the late 1980s and early '90s, she helped shape the ADA, educating Congress and the White House about the problems that people with disabilities were experiencing while also dealing with her own battle with cancer. Though she briefed presidents and members of Congress many times, she did not seek the limelight herself, and she never became a household name. Mistler died in 2004.
From 1983, when the little known National Council on Disability (NCD) first began to seriously consider a comprehensive civil rights bill, until after its passage in 1990, Sandra Swift Parrino was the NCD Chairperson. She's also the mother of two sons with disabilities.
Parrino and the NCD, working through Justin Dart and its staff director, Lex Frieden, began the process of drafting the next disability rights law. In a 1986 report, "Toward Independence," that Frieden and staff member, Robert L. Burgdorff Jr., helped to write, the NCD included a recommendation that "Congress should enact a comprehensive law requiring equal opportunity for people with disabilities."
The NCD suggested, "Such a statute should be packaged as a single comprehensive bill, perhaps under such a title as 'The Americans with Disabilities Act of 1986.'" The administration official that accepted the report was Vice President George H. W. Bush.
In the days when the administration had few influential proponents, Parrino provided tenacious leadership to create the ADA as a real civil rights law and for its introduction into Congress. In the iconic photo and video of President George H.W. Bush signing the Americans with Disabilities Act, Parrino is the only female and "mother of the ADA" sharing the podium with the "fathers of the ADA" Evan Kemp and Justin Dart.
Sandra Parrino's story is available at her blog site: sandyswiftparrino.wordpress.com
The ADA Signing Ceremony
During the late 1980s, when Liz Savage was with the Epilepsy Foundation, she coordinated the Congressional lobbying campaign, building a coalition of over 75 national disability, civil rights, religious and civic organizations, that led to enactment of the ADA. Savage was Pat Wright's strong right hand woman.
She was "there" when the ADA was organized and was a key contributor to its passage
Patrisha Wright was more than a "woman of the ADA". Her leadership during the ADA's passage eventually earned her the nickname, "The General." She was one of a handful of leading strategizers based in Washington, DC and worked especially closely with Ralph Neas, Executive Director of the Leadership Conference on Civil Rights.
Wright and Neas collaborated with a number of other leaders who focused on different objectives for passing the ADA, including Washington lobbyists Liz Savage and Paul Marchand; grassroots organizers Justin Dart and Marilyn Golden; and attorneys Arlene Mayerson, Chai Feldblum, and Robert Burgdorf. Wright served as chief of the negotiating team representing Americans with disabilities throughout the ADA legislative process. Justin Dart called her "one of the great Congressional negotiators of American history."
Wright made her first major inroads into the disability rights movement at the Section 504 sit-in in San Francisco in April 1977. Although she was there largely to serve as a personal assistant to Judy Heumann, Wright began to reveal and develop her negotiating skills in dealing with authorities. This experience led her to become more involved with overall advocacy efforts.
In the late 1970s, she joined DREDF, the Disability Rights Education and Defense Fund, where she worked with Robert Funk, Mary Lou Breslin, and Arlene Mayerson to advocate for disability rights on a national level. Wright was so widely respected in Congress and the White House that her highly individual apparel and colorful vocabulary were safe from reproach. The ADA's success was due in no small part to Wright's strategic leadership.
Work Life, A Publication on Employment and People with Disabilities, A Special Issue: ADA, Fall 1990, Volume 3, Number 3, President's Committee on Employment of People with Disabilities, page 18.
Minnesota Governor's Council on Developmental Disabilities
Parallels in Time II: 1950-2005
A Place To Call Home: The Development of Supports for Having A Home In The Community, Pg. 74
The 1990s – Explosion of Community Housing, Institution-free States, A Home Of Your Own, Expanding Family Support
Video: ADA Signing Ceremony (Courtesy DOJ Website)
Shapiro, Joseph, P., No Pity: People with Disabilities Forging a New Civil Rights Movement, (1993),
Times Books, Random House, New York and Canada, pages 55-68 and 67-68.
Minnesota Governor's Council on Developmental Disabilities: The ADA Legacy Project
Moments in Disability History 11: "Civil Rights: We're Going To Win This One"