The Americans with Disabilities Act Amendments Act: Good News for Employees with Epilepsy by Jason M. Johnson, Esq. It is a little known fact that the architect of the Americans with Disabilities Act (ADA), Tony Coelho, has epilepsy. As a member of the U.S. House of Representatives, his advocacy for people with disabilities stemmed in part from his earlier struggles finding a job because of myths about epilepsy.1 Editor’s Note: Mr. Coelho is very public about his struggles with epilepsy. reasonable accommodations to employees with disabilities unless to do so would impose great hardship on them. In addition, it prohibits retaliation against employees who complain of discrimination or request a reasonable accommodation for their disabilities. The Americans with Disabilities Act Amendments Act In 2008, President George W. Bush signed the ADAAA into law after it was unanimously passed by the House and the Senate, and it went into effect on January 1, 2009. The legislation grew out of concerns that courts had lost sight of the original intent of the ADA. Advocacy groups like the Epilepsy Foundation were instrumental in the passage of the ADAAA, so it is no surprise that some of the changes in the Amendments Act directly address the predicaments of employees with epilepsy. However, just because a person has epilepsy does not mean that he or she is automatically entitled to the protections of the ADA. An employee is protected by the ADA only when he or she (1) has a physical or mental impairment that substantially limits a major life activity, (2) has a medical record of a physical or mental impairment that substantially limits a major life activity, or (3) is regarded by the employer as having a physical or mental impairment that substantially limits a major life activity. Further, the employee with a disability must always be able to perform the essential functions of the job with or without a reasonable accommodation. The ADAAA is important to employees with epilepsy because it clarifies the meaning of “substantial limitation in a major life activity” in ways that ensure most employees with epilepsy can qualify as disabled, and it renews protections from discrimination based on myths and stereotypes about epilepsy. These are among the most significant advancements for people with epilepsy: Tony Coelho Considering this, it is sadly ironic that employees with epilepsy have been treated so unfairly by the courts. Rarely have court judgments recognized that employees with epilepsy were discriminated against, even in the most extreme cases. Thankfully, the new Americans with Disabilities Act Amendments Act, or ADAAA, restores many of the protections that Congress intended for employees with epilepsy. The Americans with Disabilities Act The ADA consists of five titles directed at addressing the impact of disabilities in employment, public accommodations, public services, and telecommunications. Title I of the ADA, the subject of this discussion, contains laws related to employment. The ADA applies to employers with fifteen or more employees.2 At its heart, the ADA prohibits employers from discriminating, or treating an employee differently, on the basis of the employee’s disability. Discrimination can occur in the form of termination, demotion, refusal to hire, refusal to promote, unequal compensation, or discipline, among many other employment actions. The ADA also requires employers to provide 22 Epilepsy: Insights & Strategies March 2009 The ADA Amendments Act Johnson Redefinition of major life activities includes brain and neurological activity Until the Amendments Act, there were a restricted number of major life activities that, when limited, would qualify a person as disabled. And, few of them had any bearing on epilepsy. Recognized major life activities included speaking, seeing, hearing, walking, sleeping, caring for oneself, and reproduction, among others. Some employees with epilepsy have been able to show that seizures or medications interrupted their sleep patterns, caused poor memory or concentration, or made manual tasks more difficult. But for most, this narrow definition has made them ineligible for the protections of the ADA. The Amendments Act remedies this issue by creating a new category of major life activities called major bodily functions. Brain and neurological activity are among the recognized functions, which means that any employee with epilepsy should easily overcome this first hurdle—demonstrating that a major life activity is limited. The focus then turns to the degree to which an employee with epilepsy is limited by his or her condition, and the Amendments Act offers some great improvements in that respect, too. Broadened interpretation of substantial limitation in major life activities The U.S. Supreme Court and lower courts have interpreted the phrase, “substantial limitation in a major life activity,” much more narrowly than what Congress intended. In the case of epilepsy, courts have required employees to show that they are nearly debilitated by their seizures or medication. For example, in 2001, the U.S. Court of Appeals for the 4th Circuit decided that an employee did not qualify as disabled even though her nighttime seizures caused her to shake uncontrollably and left her so exhausted in the morning it was as though she had not slept.3 Consequently, employees with epilepsy have walked a thin line. They’ve had to prove that the effects of their medication or seizures were severe enough to qualify them as disabled—but not so severe that they couldn’t perform their jobs. In the ADAAA, Congress specifically rebukes the courts for creating such a demanding standard, going so far as to name the court cases that went wrong. In addition, it requires the Equal Employment Opportunity Commission, the agency responsible for enforcing the ADA, to relax its regulations, which currently define “substantially limits” as “significantly restricts.” As far as determining whether an employee with epilepsy is substantially limited in a major life activity, two of the most important changes in the law relate to mitigating measures and episodic conditions. Mitigating measures no longer considered in qualifying as disabled The 1999 court case, Sutton v. United Air Lines, dealt a huge blow to employees with epilepsy. The U.S. Supreme Court ruled that to determine whether an employee is disabled, mitigating measures, those measures taken to lessen the effects of impairment, had to be taken into account.4 Lower courts followed suit in their decisions. For individuals with epilepsy, this meant that if their seizures were controlled by anticonvulsant drugs, they might not qualify as disabled. From a public policy standpoint, it was a terrible decision. It essentially encouraged employees to not take their anti-seizure medications so that they could qualify for the protections of the ADA. The ADAAA undoes the harm that the United Airlines case and others like it have done. It says that mitigating measures can no longer be taken into account when determining whether an employee is disabled. This also means that any accommodation provided to an employee with epilepsy to help him or her perform the essential functions of the job will not count against the employee. Episodic conditions such as epilepsy can now be considered disabilities Before the Amendments Act, in determining if an employee was disabled, the courts looked at the employee’s condition at the time the discrimination took place or at the time that an accommodation for a disability was requested. For employees with epilepsy, this meant that, depending on how their drugs were working or their level of seizure activity, they could be considered disabled one month but not the next. It also set up a stratification of seizure disorders because an employee who experienced absence (petit mal) seizures several times a day might be viewed as more disabled than an individual who experienced tonic-clonic (grand mal) seizures every six months. This, despite the fact that epilepsy impacted both employees’ lives equally. March 2009 Epilepsy: Insights & Strategies 23 Johnson The ADA Amendments Act The ADAAA, however, provides that episodic conditions like epilepsy can be considered disabilities even when a person is in good health. To be considered disabled, the employee need only show that brain or neurological function is substantially limited when the condition is active. Easier to show discrimination and ensure employers comply with their obligations One of the main reasons Congress passed the ADA was to address the myths and stereotypes associated with disabilities. Because of this, Congress also made it illegal for employers to discriminate against employees based on misguided judgments about their physical and mental abilities to do their jobs. This is what is known as being regarded as disabled. Perhaps more than any other disease—despite great efforts by the Epilepsy Foundation to educate the public—employees with epilepsy are plagued by assumptions in the workplace. Employers all too often assume that employees who have seizures are safety risks—even though their seizures are controlled by medication. Too many times, employers decide that employees can’t do their jobs because they have seizures—but they make no efforts to understand what happens when a particular employee has a seizure. Despite glaring ignorance by employers such as this, courts have entirely missed the point. They have required employees to show not just that they were victims of stereotyping but that they actually were disabled or the employer thought their condition was severe enough to qualify them as disabled. Not so under the Amendments Act. Under the revised law, an employee with epilepsy will be able to prove discrimination just by showing that the employer took an action because he/she had epilepsy or because the employer believed he/she did. It is irrelevant whether the employee’s seizures or condition were in fact limiting enough to rise to the level of a disability. This change in the law deters employers from questioning the abilities of workers with epilepsy, which is an important move towards ending the stigma surrounding epilepsy in the workplace and in society in general. The ADAAA represents a shift in focus from requiring employees to prove they meet a narrow definition of “disabled,” to ensuring that employers comply 24 Epilepsy: Insights & Strategies March 2009 with their obligations under the law. For employees with epilepsy, who have fought so hard for legal protections, this shift in the paradigm is a long time coming and a victory to be celebrated.5 Jason M. Johnson has his own employment law practice in the Chicago, Illinois, area. Mr. Johnson has epilepsy and has helped many clients with epilepsy-related issues in the workplace. He is a member of the Epilepsy Foundation’s Advocacy Network and of the Editorial Board of the journal, Epilepsy: Insights & Strategies. Notes and Citations 1. “A Salute to Tony Coelho.” Epilepsy USA. Epilepsy Foundation. Nov/Dec 2007. www.epilepsyfoundation.org/epilepsyusa/ magazine/novdec07/coelho.cfm. 2. Under similar state laws, employers with less than fifteen employees may be subject to disability laws. 3. EEOC v. Sara Lee Corp., 237 F.3d 349 (4th Cir. 2001). 4. Sutton v. United Airlines, Inc., 527 U.S. 471 (1999). 5. For the full text of the ADAAA and further discussion about it, go to www.law.georgetown.edu/archiveada/#ADAAA. Balance at Work By Lynda McGuirk As Mr. Johnson’s article aptly states: “The ADAAA represents a shift in focus from requiring employees to prove they meet a narrow definition of “disabled,” to ensuring that employers comply with their obligations under the law. For employees with epilepsy, who have fought so hard for legal protections, this shift in paradigm is a long time coming and a victory to be celebrated.” For me, that means balance. The ADA Amendments Act Johnson Without protection, being an employee with epilepsy was a difficult balancing act. The struggle between fear of speaking up, and sometimes having to share too many personal details, was a constant energy drain. It had a negative impact on my overall performance and sociability. My ongoing stress, naturally, brought out negative responses from my employer and coworkers. With the provisions of the Amendments Act, I have an opportunity to balance work and my epilepsy—with the law behind me. The ADAAA gives me more leverage with my current employer to reference my post-traumatic epilepsy when it becomes relevant to job performance issues; these come up on an ongoing basis. From day one at my current job, I provided documentation of my injuries and epilepsy. Overall, I believe they have taken this into account. However, knowing that I was not considered “disabled,” under the law, I rarely brought it up— even when it may have been to my benefit to do so. Fear of being considered “too much trouble,” without laws to protect me, held me back. I just accepted certain circumstances without advocating for myself. In the long run, that seemed a better option than being regarded as making excuses for certain limitations or behavior. My limitations have created a small percentage of incidents, “blips,” which occurred among many valuable contributions in my extremely busy workplace. Now I can name them, on the spot, and help to educate my community about epilepsy. Recognition that “brain and neurological activity” are “bodily functions and major life activities” rightly changes the definitions of an archaic system. The brain controls all bodily functions and major life activity. Not acknowledging epilepsy’s potential impact on major life activity kept our laws in the dark ages. Mitigating measures for epilepsy are very dynamic, not static. I have been seizure free for over four years. My medications have been adjusted several times over those years. Although my medications are currently effective, that could change, which is why treatment is monitored on an ongoing basis. Breakthrough seizures are always possible. So are physical, emotional, behavioral and social issues, and limitations. People with epilepsy, even when seizure-free, are always vulnerable. The fact that the ADA—with these amendments—no longer excludes people with epilepsy who are being successfully treated, lifts a huge burden off of our shoulders. I have often found it difficult to get others to understand that I can be healthy one month and not so healthy the next. That is normal for people being treated for epilepsy. Now, under the law, our employers are obligated to make considerations for those of us disabled by epilepsy. We are no longer forced to defend ourselves by sharing too many personal details of our conditions and treatment, in the workplace. Had this been true in the past, I feel that I would have had more opportunities available to me. At my current job, I would be without much of the stigma I still carry there, after years of successful employment. Adding value in my current workplace is ongoing— and so is my epilepsy. Next time epilepsy, or my treatment, affects my performance, I will feel comfortable expressing the reasons for my limitations, knowing that I can be protected by the ADAAA. That is a valuable confidence booster, especially in this tough economy. No one wants to have the added worry of losing a job because the laws won’t recognize your disability. Now I can confidently speak up for myself, when necessary, knowing that the law will protect me. Lynda McGuirk has post-traumatic epilepsy from a nearfatal car accident she survived in January 2003. She was a restaurant manager in Manhattan and in the Berkshires. She now works in retail in Brookline, Massachusetts. March 2009 Epilepsy: Insights & Strategies 25