By: Cerine Benayoune
Living with epilepsy oftentimes feels like an uphill battle, a challenge that resonates both now and throughout history. Throughout history, there have been many instances where people have struggled with both tragedy and day to day life overall. The same way those with disabilities fight for their rights and for their voice today, so have those before us, paving the way for the progress we’ve made as a society in our modern day. Their fight is one that was waged in the face of massive injustice, namely that of unethical medical experimentation and practices conducted on those who didn’t have support during their vulnerable times, and lacked the resources available now. Some of these injustices included, but were not limited to:
Brain surgery – without their consent, and for no apparent therapeutic reason, experiments were conducted on epilepsy patients through the means of brain surgery.
STD testing – U.S. government researchers infected a large population of Guatemalans with different types of sexually transmitted diseases without informing them or giving them the right to consent to being experimented on, and many of these Guatemalans had epilepsy.
Forced institutionalization – as with many disabilities and mental health conditions back in the day, family members of those who had been diagnosed would force them into care, not allowing them to leave until they had been deemed “cured”. Oftentimes, the staff were abusive and the practices employed against the victims were simply cruel. Other times, epilepsy was assumed to be a form of possession where the patient was invaded with an ‘evil spirit’, so those who weren’t sent to hospitals were put under the care of their family’s religious affiliation.
Forced sterilization – in a time where misunderstandings of disabilities were rampant, eugenic ideologies had a firm grasp on many leaders in the world, and it spread to those with epilepsy as well who were sterilized against their will to prevent them from “transmitting” their condition to their children.
Not only are these experiments and practices a result of cruelty, they’re also the result of ignorance. When people don’t know or understand something they have a tendency to distance themselves from it, to categorize it as other, as separate from them. This, as seen above, can sometimes have disastrous consequences. But while the past is depressing and sometimes quite overwhelming to look back on or think about, it also serves as a sign of how far we’ve come, how by the day more people are joining patient advocacy groups, or reposting information, asking questions not from a place of fear but from a place of genuine curiosity and care.
Nowadays, things are looking up. In recent decades, more and more story books and movies feature characters with epilepsy, a smart way of both lowering stigma and also giving representation to people who aren’t used to having the privilege of relating to someone on their television screen. This is especially helpful for young children, who may feel ostracized and confused by the differences in their lives and routines, or may get mistreated by those around them. Psychologically, it has been proven that positive representation in the media boosts self-esteem and raises empathy, so even those who don’t relate to the struggles or lives of those they watch can benefit from it.
Organizations like the Epilepsy foundation, CURE Epilepsy, the Defeating Epilepsy Foundation, and many others like them are giving those with epilepsy a voice, and the ignorance is slowly but surely draining away as more and more people have access to this information and resources through social media. Not only do they inform and educate, but they also actively teach those with epilepsy how to navigate a world that seems so determined to make everything harder than it has to be. These organizations offer job support, funding for medical students interested in specializing in epilepsy so that the care is more widespread and accessible for patients, and they offer support groups and programs for those with epilepsy that teach day to day skills like how to create a resume, and give them resources and help when it comes to navigating the healthcare system.
One of the most important accomplishments these foundations have accomplished, and what is arguably the key difference between our history and our present, is the community that has been created. Gone are the days where someone is only at the mercy of biased relatives or doctors, or the town they grew up in. Now it’s possible to reach out from anywhere, and find a whole group of people who not only understand what you’re going through but are willing to dedicate their lives to batting for you and your right to exist to the fullest. It’s not all doom and gloom and healthcare – these foundations also organize fun events for everyone to partake in like runs, walks, activities in schools, potlucks, and many other occasions that give people a chance to come together in a more light-hearted way, with people who understand. With all the tools at our disposal today, we’re capable of big change, and the suffering of those in the past won’t be in vain. So while it’s easy to let the cruelty dampen our spirits, it’s also worth knowing that the future isn’t so dark, that every single day, more money is being raised, more people are learning, more people are training and working to join the cause, and the community continues to grow.
Resources:
Kaculini, C. M., Tate-Looney, A. J., & Seifi, A. (2021). The History of Epilepsy: From Ancient Mystery to Modern Misconception. Cureus, 13(3), e13953. https://doi.org/10.7759/cureus.13953
Kissiov, D., Dewall, T., & Hermann, B. (2013). The Ohio Hospital for Epileptics-the first “epilepsy colony” in America. Epilepsia, 54(9), 1524–1534. https://doi.org/10.1111/epi.12335
Nadal, K. (2021). Why representation matters and why it’s still not enough. Psychology Today.
Spector-Bagdady, K., & Lombardo, P. A. (2018). From in vivo to in vitro: How the Guatemala STD Experiments Transformed Bodies Into Biospecimens. The Milbank quarterly, 96(2), 244–271. https://doi.org/10.1111/1468-0009.12318
What Makes Good Media Representation. (2022). You Press. Retrieved from: https://youpress.org.uk/what-makes-good-media-representation/
