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Lobbyist Speaks on Equal Access for People with Disabilities

By Eddy Ball
October 2009

Leggett, shown speaking on how she became a lobbyist and civil rights advocate
Leggett described how she became a lobbyist and civil rights advocate. "After becoming disabled [as an adolescent] and working on access and inclusion," she said, "I found myself drawn more and more to politics."  (Photo courtesy of Steve McCaw)

A small but engaged audience of people from NIEHS and neighboring Environmental Protection Agency that included NIEHS and National Toxicology Program Director Linda Birnbaum, Ph.D., gathered on September 8 to hear guest speaker and civil rights lobbyist Julia Leggett. Her seminar, "Disability, Access and Why it Matters," was sponsored by the NIEHS Disability Advocacy Committee (DAC) and hosted by DAC Chair Alicia Moore.

Leggett is the policy coordinator and chief lobbyist for The Arc of North Carolina - the state chapter of a national advocacy group with a 50-year history of working to secure for all people with intellectual and developmental disabilities the opportunity to choose and realize their goals of where and how they learn, live, work and play.

Continuing in the Arc tradition, Leggett works with members of the North Carolina General Assembly on legislation to improve equal opportunities for people under the laws of the state of North Carolina. She also authors the Arc of North Carolina Policy Blog ( Exit NIEHS, where she provides regular updates on the group's legislative agenda and the status of specific bills.

As Leggett reviewed the history of the disability rights movement, she underscored the central theme of her presentation. "In the United States, even though we passed the Americans with Disabilities Act (ADA) in 1996," she explained, "we have a very long way to go toward full and complete inclusion for people with disabilities."

Although she envisions the ADA as "one of the last stages of a very long civil rights fight that started many, many years ago," Leggett emphasized that there will continue to be obstacles to overcome, as well as new challenges that will emerge in the future for the estimated 41.2 million Americans with some kind of disability.

Working to overcome these obstacles, argued Leggett, is important for people who now have disabilities, but guarantees of full access to citizenship and participation should also be of concern to everyone. "Access means much more than handicapped parking …, [and] if you live long enough," Leggett reminded the audience, "you'll have a disability at some point in your life."

Reflecting on her own experiences in the N.C. General Assembly, Leggett related examples of the barriers faced by people with disabilities that limit their access. Some of these barriers are due to obviously inadequate planning and facility design affecting physical access to the legislative chambers for people such as Leggett who use wheel chairs. Others, she noted, are more subtle and perhaps less visible, but still significantly impact full participation by people with disabilities in significant ways.

One of Leggett's most recent lobbying efforts, for example, focused on the Parent and Student Involvement Act, which contains new provisions for students recommended for expulsion or suspension and their families. As she explained, children with cognitive and developmental disabilities often experience emotional and behavioral conditions that can lead to disciplinary action, so that legislation ostensibly about discipline in school also affects full participation in the educational process for students with disabilities.

In the course of her talk, Leggett pointed to recent accomplishments - the disability provision in the federal Health Insurance Portability and Accountability Act of 1996 (HIPAA), the Help American Vote Act (HAVA) of 2002 and the ADA Amendments Act of 2008. She also praised state legislation in 2007 for designating October as Disability History and Awareness Month and cited current good-faith efforts on the part of bill-drafting staff at the General Assembly to incorporate nonrestrictive "People First" wording into state legislation where possible.

However, Leggett returned several times to her great disappointment over the N.C. Legislative session that concluded recently, which the Arc describes as "the most difficult legislative session in decades." According to Leggett, the extreme budget cuts on the state level have affected people with disabilities disproportionately and threaten to set back hard-won advances in the area of community-based services. "The budget cuts this year," she commented, "were horrific for people with developmental disabilities."

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