The Americans with Disabilities Act
The Americans with Disabilities Act (ADA) was passed by Congress and signed into law by President George Bush, Sr. The ADA is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public. The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else. This includes Tourette Syndrome, which is a neurodevelopmental disorder that becomes evident in early childhood or adolescence characterized by uncontrollable motor and vocal tics. The ADA gives civil rights protections to individuals with disabilities similar to those provided to individuals on the basis of race, color, sex, national origin, age, and religion. It guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, state and local government services, and telecommunications. The ADA is divided into five titles (or sections) that relate to different areas of public life.
In 2008, the Americans with Disabilities Act Amendments Act (ADAAA) was signed into law and became effective on January 1, 2009. The ADAAA made a number of significant changes to the definition of “disability.” The changes in the definition of disability in the ADAAA apply to all titles of the ADA, including Title I (employment practices of private employers with 15 or more employees, state and local governments, employment agencies, labor unions, agents of the employer and joint management labor committees); Title II (programs and activities of state and local government entities); and Title III (private entities that are considered places of public accommodation).
TS AND THE ADA
According to the Federal Department of Justice, Tourette Syndrome is a disability covered by the ADA. However, some people with TS have had problems asserting their rights under the law, because such legal actions hinge not just on having a diagnosis of a disability, but also on proving that the condition substantially limits one or more major life activities.
If you want to know more about the ADA, the Equal Employment Opportunities Commission and the ADA website, as well as other state and Federal government agencies, can help. They have information about what the law covers, what employers, government offices, and business owners need to do to be in compliance, and what you should do if you feel your civil rights have been denied. In addition, many disability rights organizations, such as the American Association of People with Disabilities, provide ADA awareness training for people with disabilities and their advocates. The ADA National Network provides information, guidance and training on the ADA.
According to the Federal Department of Justice, Tourette Syndrome is a disability covered by the ADA. However, due to the complex nature of the condition, some people continue to have problems asserting their rights under the law, because such legal actions hinge not just on having a diagnosis of a disability, but also on proving that the condition substantially limits one or more major life activities. Some judges have quibbled over what constitutes “major life activities,” using a narrow definition that considers only very basic functions, such as eating, toileting, or walking.
The Department of Justice has noted that interacting with others and working are also major life activities—and these are certainly areas where many people with TS encounter disability-related barriers. Individual judges can and do exercise discretion in how they interpret the law, which means the outcome of an ADA case that concerns TS (or any neurological or psychiatric condition, for that matter) is never absolutely certain. Since 1990, several people with TS have brought similar cases under the ADA, targeting a variety of public places, employers, and government agencies that they allege have denied them equal access or equal treatment.
Tourette Syndrome affects an estimated 1 million Americans, and symptoms vary drastically per person. Take, for example, Katie Allensworth, an ICU nurse with Tourette Syndrome. Katie reports that her work is more anxiety-inducing than ever before – and not in ways you would expect. Her newest tic involves sniffling. As workplace tensions grow over the coronavirus, she is more aware of her tics and their effect on others. “Do they think I am sick or contagious?” she asked in a recent blog post. “Are they going to send me home and quarantine me for two weeks if I tic too much?”
In addition to being a nurse, Katie is a Rising Leader with TAA. Rising Leaders (18 – 26) educate young adults from all over the country about Tourette Syndrome to spread tolerance of and an increased understanding about the condition. Though she works hard to educate the public about her condition, Katie’s experiences simply highlight the need for workplace protections, like the protections and rights afforded under ADA.
Youths Need Protections Under ADA
In May 2019, Emily Womack, 15, from Duncan, Okla., went to see Avengers Endgame opening weekend. Her experience was spoiled when she was asked to leave the theatre before the movie began. Emily, who has Tourette Syndrome, reports AMC Theatres asked her to leave because she began to experience tics during the trailers. The TAA and the Womack family have asked for an opportunity to train AMC Theatres staff about Tourette to ensure that people living with Tourette’s don’t have to sacrifice the simple joy of going to the movies.
Emily has since become a Youth Ambassador for the Tourette Association of America, completing training in July 2019. The training was designed to equip Ambassadors (12-18) with the tools they need to speak publicly about the often-misunderstood disorder.
“I would like to explain to others what Tourette Syndrome is and the way it affects those who live with it,” said Emily. “I believe that it is important to not only spread awareness to those who don’t know about Tourette, but also to those in social situations that don’t know how to approach Tourette. I believe that by educating to others who don’t know what Tourette is or have an incorrect judgment of it, we can help to rid and prevent the stigma attached to Tourette Syndrome. I hope over time I can play a small part in gathering more support to help others that not only have Tourette Syndrome, but also those that love someone with Tourette Syndrome.”
To celebrate this milestone, the TAA is celebrating the anniversary later this month with programming and resources for the community to understand this liberty. In particular, Ellie Jarvie, MSW, LCSW, TAA Wisconsin Chapter Leader, is hosting a free webinar on July 29 called “Workplace Accommodations and Disability Rights.”
As someone who has experienced severe tics throughout most of her life, Ellie found that educating others about Tourette Syndrome was key for her success both in school and in the workplace. She has been involved in support and advocacy efforts on the State and National Level since her diagnosis in the mid-1980s. In fact, she has dedicated her life’s work to support youth and adults with a variety of disabilities, including extensive experience in community mental health programs.