Anti-Ableist Amherst: Notes From An Ex-Epileptic

When I talk about my experience with epilepsy, there’s a way in which I usually begin the narrative.

I’ve told this story many times. I was 13, I went to bed like usual one night, and then woke up in a hospital. I had had a seizure — my first seizure. And thus, it all began.

It’s been nearly a decade since that night, so my memories are — perhaps unsurprisingly — fuzzy of the brief hospital stay in the winter of seventh grade. It’s been years since I last had a seizure, and in fact, I hardly think about them now on a day-to-day basis. But epilepsy does stay with you. Acronyms like EEGs (electroencephalograms — they made me look like an egg) are deeply familiar to me; my shiny medical dog tag with my parents’ phone number and instructions for what to do in case I have a seizure (“lay on side, clear mouth”) sits on my desk, and I can bemoan the failures of Keppra with my epileptic kin. During my teenage years, I got MRI after MRI, crossed state lines to visit my neurologist, and could only sleep on the bottom bunk, having been told it was safer in case of a seizure. 

Certain things linger in your body, in a non-literal sense. I am now clear of the disorder, medically speaking. I am free from the limitations that epilepsy had placed on me for years. I was able to get a driver’s license, which younger me would not have expected. I vividly remember how I used to feel — all the discomfort, the frustration, the sadness, the fear — and now try to be attentive to the reality that this is only my story. But now, most clearly, I see the social barriers that go further than the disorder itself in marginalizing people with epilepsy.

How can we make the world better for those with epilepsy, especially those whose epilepsy may never abate? Of course, advancing epilepsy research is a clear, crucial step to helping develop the best treatment and possibly even a cure. Sadly, important epilepsy research remains in limbo — scientists at the University of Wisconsin-Madison came close to finding a cure based on studies on mice, but President Trump paused millions of dollars in federal funding for research. 

Ensuring barrier-free and equitable healthcare access for all is similarly important. The Centers for Disease Control and Prevention (CDC) notes that adults with epilepsy are more likely than the general population to suffer financially from medical costs, with some skipping doses of medication to save money. This especially affects people from the Global South — as the World Health Organization notes, roughly 75% of epileptic people in poor countries may be missing needed treatment. 

Additionally, as for structural change, we need to combat the brutality and terror of Immigration and Customs Enforcement (ICE), which recently detained a man with epilepsy, Albiero Ropero Remolina, who “missed several doses of lifesaving anticonvulsant medication under the feds’ watch.” He has, since then, thankfully been released, yet the persecution of disabled people by ICE is well-documented and continues under the aegis of our federal government.

We can create a system in which nobody with epilepsy is expected to handle their condition alone — a system in which everyone knows seizure first aid. According to the Centers for Disease Control and Prevention, 10% of people could have a seizure in their lifetime. Organizations such the Epilepsy Foundation and Epilepsy Society UK explain the basics of what to do if someone has a seizure, and I encourage you to utilize these websites. According to an article on seizure first aid for the epilepsy journal, Acta Epileptologica, “the formation of an epilepsy research network, community-based education initiatives, and a paradigm shift towards primary health care for epilepsy have collectively been shown to elevate overall epilepsy awareness and substantially alleviate the seizure burden.” If knowing what to do in the event of a seizure were commonplace knowledge, people with epilepsy would undoubtedly be safer in their communities. 

Another critical infrastructural step — that may be surprising — is the importance of investing in public transit. In the highly car-centric U.S., driving is often equated with independence. This thus renders some people with epilepsy who can’t drive due to having uncontrolled or recent seizures less able to travel freely, given the relatively minimal resources allocated in much of the country to public transportation. This can constrain job and education opportunities, as well as simply limit people’s ability to attend fun events and connect with others. Funding public transit to support people with epilepsy would also benefit society at large through the curb cut effect, which describes what happens when a change implemented to help disabled people (such as a curb cut, designed to help people in wheelchairs move on streets) benefits the community at large (people pushing strollers or luggage, for example). With more money allocated to public transportation, people without epilepsy who otherwise do not drive would also benefit.

People with epilepsy deserve dignity and independence. Measures such as including warnings about flashing lights are commendable first steps, but not enough when people with epilepsy are thought of as insignificant minorities that must be occasionally accommodated instead of people who deserve to be active and full participants in all facets of society.

Many of these recommendations may seem political. It is because to assert the full humanity and advocate for the empowerment of disabled people in an ableist society is a profoundly political act. Meaningfully including disabled people, including those with epilepsy, must be part of all our work to build a better world.