Epilepsy and Stigma: How Discrimination Affects Employment and Healthcare Access
- Ishaan S Ahuja
- Nov 4
- 4 min read
Imagine walking down the sidewalk on 1st Avenue in New York City, and across the street, you see people pausing their walk to work to look at someone on the ground leaning against the wall of a building. A crowd is forming, so you can’t see exactly what’s going on from where you are. As you get closer, though, you see that it's a person, lying down by the building. All of a sudden, they start twitching and jerking. Everyone gasps and takes a step back. You hear, “What’s wrong with him?” “What is he doing?!”
He was having a seizure. 39.8% of individuals with Epilepsy encounter social stigma, the negative attitudes leading to discrimination toward a specific group of individuals, daily. This means that 4 in 10 individuals with Epilepsy are looked down upon by others for their disability every day. How does this impact the daily lives of individuals with Epilepsy? In my last blog, we explored the current state of research and public knowledge around Epilepsy, including the lack of advocacy and fundraising for Epilepsy compared to other disabilities such as Autism. I also shared an overview of Epilepsy, including the types and causes, as well as challenges individuals with Epilepsy face physically and socially. Using my last blog as a foundation, I want to probe how social stigma around Epilepsy leads to employment discrimination and limited access to healthcare.
What does that 39.8% number I mentioned earlier look like? Researchers use patient questionnaires and scales such as the “Stigma Scale for Epilepsy” and the “Quality of Life in Epilepsy Inventory-31” to understand and define stigma. These scales assess individuals with Epilepsy’s interactions in public, including their feelings and neurotypical individuals' feelings during these interactions. Quality of life is measured by assessing categories such as emotional well-being, energy/fatigue, and cognitive functioning, among others. Unfortunately, researchers have found that social stigma leads to employment discrimination against individuals with Epilepsy. This is despite laws like the Americans with Disabilities Act, which protects individuals with all disabilities, including Epilepsy, from employment discrimination.
For example, in the notable court case of U.S. Steel v. Pontinen (2018), after the passing of the Americans with Disabilities Act in 1990, Russel Pontinen applied for and was offered a job at U.S. Steel (USS). In his medical disclosures, Pontinen stated his Epilepsy, after which the job offer was rescinded. Pontinen sued USS and the Seventh Circuit under ADA, citing that this rescission of the job offer was discriminatory. However, unfairly, the courts ruled against Pontinen, saying that his seizures would cause “safety issues” for him in the work environment. What the USS and courts failed to offer Pontinen was reasonable accommodations, such as access to guardrails, a spotter, or a job adjustment to decrease the amount of mobile equipment being worked with, and a chance to show his medical condition as stable, and prove that it is safe for him to work.
Why would this happen? According to this study out of Brazil, employers feel there are specific challenges when hiring an individual with Epilepsy for a job, including reduced productivity, frequent absences, and costly accommodations. They assume that because an employee may have seizures, they cannot work as effectively as a neurotypical employee.
Unfortunately, it does not stop there. Hiring discrimination against individuals with Epilepsy has resulted in issues with healthcare accessibility for these individuals. Without a job with insurance, people with Epilepsy are not always able to afford healthcare. The data backs this up:
● Adults with active and inactive Epilepsy are less likely to have private insurance (39.3% and 53.9%, respectively) than individuals without Epilepsy and are more likely to be on Medicaid or other public insurance. This does not mean that Medicaid, Medicare, or any other public insurances provide fewer health benefits than private insurance. It means that the number of individuals with Epilepsy able to afford private insurance is significantly less than without Epilepsy, because of the hiring discrimination individuals with Epilepsy face, the Epilepsy Foundation says.
● Adults with active or inactive Epilepsy were more likely to be unable to afford prescription medicine (13.2% and 12.4%) than individuals without Epilepsy (6.1%). Unemployment in the Epilepsy community is a significant factor in this disparity. Without employment, individuals with Epilepsy don’t have the income to afford prescription medicines. Individuals with Epilepsy sometimes go to the extent of skipping medication doses to save money, further preventing treatment for their condition.
Employment discrimination causes significant inequities in access to healthcare for individuals with Epilepsy. Affording healthcare should be the last thing an individual with Epilepsy should have to worry about. Not having healthcare prevents them from receiving proper treatment for their condition.
Some resources can help: Epilepsy organizations such as the Epilepsy Foundation and Epilepsy Alliance America are working hard to provide financial and educational resources for individuals with Epilepsy. But, if you or someone you know has faced hiring discrimination due to Epilepsy, contact the U.S. Equal Employment Opportunity Commission or Jeanne A. Carpenter Legal Defense Fund at the Epilepsy Foundation for help.
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