The Americans with Disabilities Act (ADA) protects people with disabilities from discrimination. This act was passed on July 26, 1990. It has provided people with epilepsy and seizures more opportunities since its passage. While bias may still exist for people with disabilities, this important legislation is in place to make sure that no one in the United States is silenced due to their disability. In honor of the ADA’s 33rd anniversary this summer, we’re providing a firsthand account from a member of the Epilepsy Foundation’s staff on her experiences working within the legal system. She reflects on the ADA’s approval and how we can continue to make it better to serve the epilepsy and disability communities in years to come.
Allison Nichol is Director of Legal Advocacy at the Epilepsy Foundation. Prior to joining the Foundation, she served the Department of Justice for more than twenty years as both Chief and Deputy Chief of the Disability Rights Section of the Civil Rights Division, Special Counsel on Disability Employment to the Deputy Associate Attorney General for Diversity and Inclusion, Office of the Associate Attorney General.
She also served as a member of the Executive Staff of the Attorney General’s Diversity Management Advisory Council and liaison to the Attorney General’s Committee on the Employment of Persons with Disabilities. She was the Department’s representative on the White House Office of National AIDS Policy’s committee drafting the National Strategy on HIV. She is a nationally recognized expert on the Americans with Disabilities Act (ADA) and an Adjunct Professor of Law at Georgetown where she teaches disability discrimination law.
“The Good Fight” – The ADA At 33-Years-Old
In the early nineties, I successfully tried the first employment discrimination case under the new ADA. I did not fully understand that it was one tiny piece of a decade’s long revolution by people with disabilities to gain their freedom and finally receive recognition as part of “We the People.” In the many years that have followed, I have been privileged to know, work besides, and learn from the creators and leaders of the disability rights movement. Three of them were connected to the Epilepsy Foundation.
Passing the ADA Into Law
When the 101st Congress assembled in 1989, the disability rights community’s focus was passage of the ADA. Elizabeth (Liz) Savage, then working at the Epilepsy Foundation, lead the Capitol Hill lobbying effort. Those efforts played an essential role in the passage of the Bill.
Another key leader was United States Representative Tony Coelho, a person with epilepsy and former member of the Epilepsy Foundation’s Board. He had testified about disability-based discrimination to an historic joint session of Congress the previous year. He re-introduced the House Bill. He was instrumental in the passage of the law and continues to be the leading light and most powerful voice on disability rights policy.
Alexandra (Sandy) Finucane began her career at the Epilepsy Foundation in the mid-90’s as ADA law and policy was being created. She gathered the important documents of those first years and established the Foundation as a leading voice in disability policy and the Jeanne A. Carpenter Legal Defense Fund. Publicly, it is lesser known that she played a role in the passage of the ADA Amendments Act. This guaranteed that people with epilepsy are covered by the ADA, even when they are not experiencing seizures.
This year, on the 33rd anniversary of the ADA, there is a lot to be proud of. The ADA has literally changed the country. It has opened public accommodations and state and local government program participation through policy changes, effective communication requirements, and increased job opportunities by requiring reasonable accommodations in employment. It has also freed many people from the cruelty of being forced to live in institutions due to disability instead of their own communities. But is “The Good Fight” over?
How Can We Continue to Protect the ADA?
I teach my law students that the ADA is a living, breathing thing that must adapt to changing circumstances and protect and defend itself from those who would see it eliminated. To continue to serve the disability community, the path forward must include:
1. Defend the ADA
Defending the ADA from those who would weaken or eliminate. We must also ensure that Federal agencies that enforce the ADA are well-funded.
2. Keep the Internet Accessible
Ensure accessibility of the internet on all mobile devices and applications. Today, most people conduct business, medical care, communication, entertainment, banking, working, and education online. All of this must be accessible and remain this way for generations to come.
3. Allow People with Disabilities to Live How They Choose
Free every person from the cruelty of being forced to live in an institution instead of with their family or in their community. Sufficient funding must be made available for each person to live independently and have it be a life of their own choosing.
4. Protect Caregivers
More protection must be provided for those who are caregivers. On the first jury for my ADA case was either a person with a disability themselves or a caregiver for one. The U.S. Equal Employment Opportunity Commission (EEOC) has done some terrific work in this area, but more is needed. No one’s job should be at risk because they are a caregiver for a person with a disability.
5. Provide Evolved Workplace Accommodations
We must continue to insist that every job opportunity in every profession be open to people with disabilities. Most people with disabilities need no accommodation at work. However, for those who do, those employer accommodations must continue to develop and grow so that people with disabilities can compete fairly. The idea that a person could work from home seemed unlikely a few years ago, yet now is common. In fact, it saved many businesses during the pandemic.
6. Improve Educational Opportunities
Of course, before employment is education. We must continue to improve educational opportunities for people with disabilities from K-12 to higher education, the trades, and entrepreneurship. People with disabilities should be everywhere, living a life of their own choosing.
7. Provide Quality, Affordable Healthcare
Finally, we must continue to provide a solid foundation of quality, affordable healthcare. No person should live with fear and stress of losing access to their family's healthcare. The ADA has not worked as pictured and the defense and expansion of healthcare rests with Congress and State Legislatures. Constant and persistent attention is critical. In that first ADA case, the plaintiff had been fired from his long-time job for having brain cancer. He was left without an income stream and health insurance. Tragically, several months after the close of the trial, I attended his funeral and heard directly from his family members about their struggle with the healthcare system. That should never happen to another family.
Legal help for people with epilepsy is vital. The ADA was created to protect people with disabilities from discrimination and harm. We encourage you to learn more about your rights as a person with epilepsy.