An Interview with Ralph G. Neas, GBS and CIDP
Written by: Ellie Herman, Advocacy Coordinator
Thirty-Four years ago, the Americans with Disabilities Act (ADA) was signed into law. We decided to celebrate the anniversary of this monumental piece of legislation by sitting down with Ralph G. Neas, a key civil rights leader in Washington, who has helped pass several landmark disability laws, including the ADA.
From 1981 to 1995, Ralph headed the Leadership Conference on Civil and Human Rights, “The Lobbying Arm of the Civil Rights Movement.” As the CEO of the Leadership Conference, he coordinated a coalition of 185 national organizations advocating for progressive civil rights legislation. Ralph’s work quickly turned personal as disability rights came into the civil rights discourse.
Ralph, who was diagnosed with Guillain-Barre Syndrome (GBS) in 1979 and spent 75 days on a respirator during his 145 days in a hospital, advocated for the inclusion of the disability community into the larger civil rights movement by sharing his own story as someone who was disabled by GBS. Ralph, and other leaders in the disability movement, worked tirelessly to shift the narrative of disability rights from a benefit to civil and human rights, something that was initially controversial. To Ralph, this shift was “the next stage of the disability rights movement,” and crucial in garnering support from all quarters of the civil rights community for future legislation that would protect people with disabilities, such as the ADA.
With the incredible achievements of disability advocates like Ralph, the disability community became new and equal participants in the civil rights movement, united to ensure that protections would be put in place for marginalized groups. When civil rights advocates came together to work on Section 504 of the Rehabilitation Act of 1973, this was “the first time, the disability community was at the table helping to draft a civil rights bill.” For Ralph, as Senator Edward Brooke’s new legislative counsel, Section 504 was the first civil rights bill he worked on.
When it came to passing the ADA in 1990, Ralph emphasized the bipartisanship environment that existed in Congress at the time and the importance of grassroots advocacy. The latter cannot be underestimated. Ralph noted that more than one in four Americans have some type of disability (cdc.gov). And, importantly, he added that nearly every American knows someone with a disability, making the grassroots potential on disability issues unlimited. He especially highlighted the grassroots effort of advocates in every state around the country who worked locally for the ADA and helped effect change nationally and globally.
In 2018, Ralph found himself paralyzed again and ended up in the hospital, this time with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). After 365 days in hospital beds, Ralph recovered from CIDP and made his first public appearance at an event near Capitol Hill celebrating the 29th anniversary of the ADA. When heading to the event with the aid of a walking cane, Ralph used a curb cut, a meaningful and memorable moment where his advocacy ultimately helped him personally.
When reflecting on the ADA, Ralph called it the most important civil rights law since the 1960’s. It established for the first time legal protections for people with disabilities in employment, public accommodations, transportation, and communications. But Ralph and his colleagues made it clear that “From the beginning, we always thought the ADA was a floor, not a ceiling.” Both the ADA and Section 504 were designed to evolve, and they have.
Indeed, just in the past several months, two important new rules were adopted, one to the ADA and one to Section 504. The first rule, promulgated by the Department of Justice, updated Title II of the ADA. It requires state and local governments to make sure their services, programs, and activities are accessible. The update to Title II strengthened digital accessibility so that people with disabilities can access e-government services and public information without facing any barriers (ada.gov). The second rule, issued by the Department of Health and Human Resources, strengthened Section 504 by addressing discrimination in health care settings, enforcing standards for accessible medical diagnostic equipment, and ensuring accessible digital content and apps for people with disabilities to fully utilize health care services without discrimination or experiencing any barriers (hhs.gov). These rules adapted the ADA and Section 504 to the technological advancements of the past several decades.
As technology progresses and people with disabilities experience discrimination and barriers in new ways, Ralph is confident that the necessary improvements to the ADA will be made to ensure people with disabilities can fully participate in society and thrive. Thirty-four years later, we thank advocates like Ralph and others in the disability community for their tireless advocacy.
The GBS|CIDP Foundation International is currently establishing a Disability Task Force made up of patients with a special interest in disability advocacy. If you are interested in participating, please contact Advocacy Coordinator, Ellie.Herman@gbs-cidp.org.