Epilepsy, Lost in Translation [part 2]

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

Thanks again to Liz for sharing her story! Visit the Epilepsy Foundation website for more info on Epilepsy and ways to take action.

This is one story among many of how students with disabilities are denied educational opportunities because of discrimination. Also via Liz is the story of Ashley Volion, a woman with cerebral palsy who is being forced by the state of Louisiana to give up a spot in a Ph.D. program if she wants to continue receiving the services her disability requires.

There’s a petition to the state of Louisiana in support of Ashley.

Guest Contributor Liz Brasington

Jordan surprised me with its February chill, torrential downpours and the occasional light snow. I came prepared with a long coat and rain boots, but still I felt exposed. The fear of a seizure was overwhelming, driving me inside myself. I withdrew. I felt like a ticking time bomb, one seizure away from being thrown out of the study abroad program that almost refused my admission. The agreement my doctors signed claiming I was in good health held little comfort for me, even though it placated the study abroad organizers.

As we started orientation, the emails exchanged between the program administrators, and I continued to sting. On our first day of orientation the housing organizer told students they tried their best to find everyone host families. I knew they did not try for me. I wanted to scream at them and shout, “You told me Jordanians would not want me near them and implied you did not want me either.” But their behavior made me feel like I should be ashamed of my condition, and I couldn’t counter their lies without exposing myself to other students in the program.

3rd Circle, Amman, Jordan

3rd Circle, Amman, Jordan. Credit: Marco Nae, CC license

I had no idea what my living situation would be when I arrived. They’d only only let me back in two weeks before my flight left, so I’d never heard a decision. When I asked during orientation, the housing organizer received me coldly.

“Oh right, you,” she said. “You have an apartment, but it’s almost like a homestay.”

I moved into an apartment with a friendly landlord. I never confirmed if he knew about my condition. When I told my American and Norwegian roommates about my seizures, they received it well. One even speculated that she was intentionally placed with me.

“I feel a bit proud,” she said. “Like the program placed me with you because I am responsible enough to take care of you if something happened.”

I suspected that this wasn’t far from the truth.

Midway through the semester, I reminded my roommates again about what to do in case of a seizure. The tone in their reaction was more negative.

“It scares me when you talk like this,” one said. “I wish you wouldn’t.”

Scared. Their fear echoed through me. I remembered that first email from the study abroad program that withdrew my initial acceptance into the program. The organizers had to reassess my admission based on my condition. It reinforced my constant paranoia that people would reject me once they knew the truth. In my roommates’ case, they did not mind knowing, but they did not want to be reminded. I felt my mere mentioning of it pushing them further from me.

I did not expect to tell any of my Jordanian friends about my condition. I believed that Jordanians would meet my condition with disgust and fear. I imagined them withdrawing and shooing me away, like they might to stray cats. It was a cruel stereotype and one that, like most stereotypes, proved false.

A Jordanian law student often hung around the language building to look for an English speaking partner. She approached me on several occasions and I started sitting with her. Initially, she wanted to help me study, but we ended up talking about our lives. Eventually she told me in a mixture of Arabic and English how several years ago a terrible car accident put her into a coma.

“Ever since then,” she said. “I have had something they call depression. It is something wrong with my brain. I have to see a doctor and it is something I cannot really talk about very much.”

Despite my own history with depression, I found myself embarrassed for her due to my months of repressing my own condition. But as my blush faded so did my inhibitions and I blurted out my own admission.

“I have a brain problem too. It’s called epilepsy,” I said. “I have seizures.”

After that conversation, she eagerly looked for me every day, even growing jealous of my other speaking partners. Unlike my other Jordanian friends, she was quiet and frank. She called me Ellie or El and began researching epilepsy.

“Ellie, I found some information about epilepsy,” she said one day. “I read that you must stay away from flashing lights. You must be careful.”

I smiled and nodded. Flashing lights did not cause my seizures, but I thanked her for the information. This eagerness to be informed about epilepsy did not align with what my program told me about Jordanians. She did not look at me as a curiosity or an aberration, but rather as a friend with whom she could share her own fears.

“Ellie, you feel like a sister to me,” she said. “I never met anyone who also had trouble with their brain.”

That conversation was the last time I saw her. She texted me a few days later saying she had to go to Beirut for the weekend and I stopped seeing her around campus. A few months after I returned home, I asked my speaking partners for an update on her, but none of them had seen her on campus recently.

I’m hesitant to say that my program lied to me. Perhaps there are some ill-feelings towards epileptics in Jordan that surpass those I’ve experienced in America. But in the U.S., I have to go on a message-board to find others that understand my issues, whereas in Jordan I found someone I could converse openly and in detail with about my difficulty.

None of the program administrators advocated on my behalf or my right to study in Jordan. Instead of helping me, they put barriers between myself and Jordanians. By asserting Jordanian’s supposed extreme bias against epilepsy, they led me to resent a culture that never harmed me. They told me these things so I would not enter the program at all. They wanted to stop a potential problem before it ever arose.

I never had a seizure in Jordan. I had a seizure several months after I returned, in a exercise class. I woke in anger to see fellow students looking down on me, standing in groups whispering. I realized that no matter the culture, there will always be those fearful eyes. The only thing I can hope for is that, wherever I go, there will be one pair of eyes that sees a person, versus a spectacle to stare at.

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