This summer marks the 28th anniversary of the Americans with Disabilities Act (ADA). Signed into law by President George H.W. Bush, the ADA prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life. While the bill’s all-encompassing language is grand in theory, in practice the concept of equal access to American life has failed many of us living with chronic health conditions.
I was diagnosed with epilepsy when I was 3. Epilepsy has multiple possible causes — including brain abnormalities, infection, stroke or brain tumors — but for up to half of people with epilepsy (including me) the cause is unknown.
Prior to 2014, I had severe seizures, medically known as refractory complex partial seizures, about seven times a month. During their initial stage, only I could detect the creeping sensation in my stomach and on my face. But once the brain chaos took over, there was no hiding a seizure’s outward symptoms of muscle clenching, uncontrollable moans and repeated tongue clicking, always disturbing to see for an outsider. I lost awareness for a few minutes during these spells, and when I resurfaced, I was typically woozy, albeit functional for an additional 15 to 30 minutes.
Despite my seizures’ disruptive nature, I worked full-time until I had my son in 2007. I generally didn’t share the fact that I had epilepsy with my employers until I had a seizure at work in my coworkers’ presence — then disclosure was non-negotiable.
I believe I’ve lost two jobs due to my epilepsy. In one case, my biannual evaluation very suddenly went south after I had a grand mal seizure at the office, after working there for several years. Following a battle with the HR department, my employer was compelled to offer me a 12-month severance package, in part thanks to the ADA. I had a contract job with another employer when I took leave to have elective brain surgery, with the intention to return. But after my surgery, my boss never responded to my emails. I didn’t go back.
I believe I’ve lost two jobs due to my epilepsy.
As imperative as the ADA is — it is important for America to have a law that clearly outlines the requirements and responsibilities of government entities, public facilities, employers, stores, etc. — to those of us who manage chronic health issues, the ADA alone cannot undo a cultural mindset of what society considers “normal.”
Here’s an example. In the spring of 2013, I had two seizures in one day while at my kids’ school (one at drop off, one at pickup), which prompted a private meeting between the principal, the school nurse and me. The principal was concerned. She asked me “what my plan was" regarding the seizures.
“I could stay off your campus but short of that, I can’t guarantee this won’t happen again,” I told her. “I don’t plan my seizures – they just happen.” I looked at the nurse, silently imploring her to back me up with medical facts, which she did. The principal acknowledged that banning me from my kids’ school was not a good option. Managing others’ reactions to my seizures (coworkers, friends, school staff, passersby, my own parents) in addition to managing the epilepsy was an omnipresent burden.
After trying 17 different medications and alternative therapies, in 2014 I opted for elective brain surgery. Though my recovery was complicated, I am now seizure-free. I got my first driver’s license in 2017, which had major impact on my family life, but perhaps most significant, I can easily pass as normal. While this new normal status is a camouflage I’m relieved to wear, now that I’ve obtained it, I am even more aware of the ADA’s limited benefits and effects.
After trying 17 different medications and alternative therapies, in 2014 I opted for elective brain surgery.
According to the World Health Organization (WHO), more than 1 billion people — about 15 percent of the world’s population — have a disability. I suspect we all know and love at least one person who manages a chronic condition. In many cases, the disorders may not be visible, as those of us with health conditions typically do our best to appear normal. This impulse to assimilate is critical to fitting in to our society, partly because disability makes so many people uncomfortable.
By default, those of us in the 15 percent lead our lives with inordinate degrees of personal strength, grace and bravery, often invisible to others. While the ADA is a critical advocacy tool, its ultimate goal — assimilation into mainstream life — will not be achieved without a major cultural shift, one that equips people to accept that humans’ bodily abilities are variable, and that promotes a compassionate supportive response, in the face of those differences.
The school principal’s request for a “plan” was spurred by her need to assuage the school staff’s apprehension over my seizures. But neither I nor the ADA can provide this blueprint — it requires something much bigger; an increase in society’s tolerance, empathy and courage.