Epilepsy, Lost in Translation [part 1]

Content notes/Trigger warning: ableism, xenophobia, racism.

This is the first part of a guest post that will be concluded tomorrow. Many thanks to Liz for submitting this! As it turns out, November is National Epilepsy Awareness Month. Check out the Epilepsy Foundation for more info and ways to take action.

Guest Contributor Liz Brasington.

When I applied to an undergraduate study abroad program in Jordan, I never anticipated how it would change my perception of myself as someone with epilepsy, or that it would be an experience of how ethnicity, disability, and prejudice can connect. I never thought that the program I had applied to would use a dishonest, even racist representation of Jordanian culture as a cover for their ableism in wanting to exclude me from participating.

When I woke from my first seizure, I heard the soft murmuring of voices behind a curtain of stillness. The cool tiles in the computer lab felt soft compared to the stiffness in my body. I was sure my head had cleaved in two, like two tectonic plates splitting apart. A little earthquake in my head. I remember feeling calm, and the gentle hands of the EMTs as they whirled me away to the sound of sirens. I remember the crinkled brows of friends who later came to visit me in the ER, the way the corners of their eyes dragged down with the edges of their mouths.

There was hope that my first seizure was an isolated if inexplicable incident. Maybe it was the stress of my senior year of high school, or a temporary chemical imbalance. But the second seizure in a Florida hotel sealed the deal. I became epileptic. I don’t remember much reaction from my parents. But I recall the emotionless faces in stale clinical waiting rooms as I waited to sit under strobe lights or lie on a tilt-table.

I did not take to this identity very well. I felt trapped in a burning house, waiting for the fire to reach me. I didn’t know when, but I knew I would get burned. The wild electricity in my brain would strike fast and hard. Later I would wake up scarred, singed with the knowledge that a few more people had seen me laid out and writhing on the ground.

College came along with a few challenges here and there. But I studied hard and could pretend that I wasn’t any different from those around me. Like many rising juniors, I applied to study abroad, specifically a program in Amman, Jordan.

I was accepted, but admission came with the condition that the program could take away a student’s acceptance at any time. When I filled out my medical forms, I didn’t think twice about listing my condition. I never anticipated that the program would email me back, withdrawing my acceptance. [I omit the program’s name as I don’t want to malign an entire business for the actions of a few individuals.]

Their reasoning disturbed me. A representative of the program insisted that they were concerned that I would not be accepted in Jordanian culture. They bluntly explained that no Jordanian family would ever accept me into their home once they knew about my condition.

I’ve faced some adversity in the past because of my condition, but I never considered that it could mean rejection by an entire culture. When I received that email, I promptly turned of the lights and hid under my covers, refusing to go to Arabic class. It all seemed so pointless.

As the initial shock/surprise faded, I reasoned that if I continued to be honest with the program about my illness, I could get past their barriers. But suddenly the narrative changed. My acceptance was no longer an issue of cultural rejection, but rather their liability if something happened to me. The program needed to know that if I had a seizure, they wouldn’t be responsible. I had to have a plan for what would happen: how would I tell my teachers? How would I get to the hospital? Where would I get my medicine?

They never offered any resources beyond a simple medical card, but I could handle that. I made up some plan, an outline I could never follow considering I would be unconscious if I had a seizure. This was not enough.

Next, the program asked that I turn in two signed reports from two doctors that I was in optimal health for my visit. My surly Irish neurologist did not receive this request well, considering he could not in good faith tell them any of this. But for my sake, he did. I later signed away any right I had to sue the program if I came to harm on their watch due to a seizure.

“Why do they want these guarantees?” My mom said. “It’s like promising you won’t die in a car accident.”

Their final requests indicated that the program did not worry that Jordan would reject my condition and therefore, me. That initial narrative was an attempt to scare me away from trying to go to Jordan. I don’t claim that some Jordanians do not have some uncharitable feelings towards epileptics. But telling someone they’ll be rejected by a culture, full stop, is damaging.

Two weeks before my flight, they allowed me back into the program. I didn’t know where I was living, or what to expect when I arrived. I was scared of the program organizers and furious at their attempts to alienate me.

I never felt before that I was disabled. But the program made it clear that I could not expect the same opportunities of an able-bodied student. I could not expect answers to my health questions nor sympathy if something happened to me. My success abroad was contingent on one condition: keep your condition hidden.

I’m glad I didn’t keep their advice.

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