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Epilepsy Blog Relay: On Epilepsy and Stigma

Okay so I’ll be honest the topic of epilepsy and stigma is a bit of a bugaboo of mine. (bugagoo: an object of intense frustration, often taken out of proportion) If you get me talking about it in person you will be sure to regret the time I will dedicate to the topic. But I promise to spare you the soapbox today. I’m going to break it down and maybe make this a little interactive.

This story is part of the Epilepsy Blog Relay™.

Where does epilepsy stigma come from?

I mean, the stigma has been around as long as the disease. If only people had been working on solutions that long. (sorry, sorry, there I go again.) The Hammurabi code, dated 1780 B.C.,dictated that the person with epilepsy could not marry, or testify in court, and the purchase contract of a slave was considered void if the slave suffered an epileptic seizure within the first three months of purchase.

In 400 B.C., Hippocrates wrote, “The popular superstition, the magicians, the wizards and charlatans, who named the disease sacred, are being attacked. The alleged divine character is only a shelter for ignorance and fraudulent practices. The assumption of the gods being its cause reveals those people as fundamentally impious, for the gods do not make men’s bodies unclean, as the magicians would have them believe” . Epilepsy is no more divine than other diseases.”

On July 14, 1933, the Nazi government instituted the “Law for the Prevention of Progeny with Hereditary Diseases.” This law, one of the first steps taken by the Nazis toward their goal of creating an Aryan “master race,” called for the sterilization of all persons who suffered from diseases considered hereditary, such as mental illness, learning disabilities, physical deformity, epilepsy, blindness, deafness, and severe alcoholism.

Epilepsy stigma mid to late century

In the United States, for instance, people with epilepsy were forbidden to marry in 17 states, until 1956. The last state to repeal this law did so only in 1980. I was 8 at the time and had already had several febrile seizures. It would be 4 more years until I was diagnosed.

In 1956, 18 states provided for the sterilization of people with epilepsy on eugenic grounds. In the United Kingdom, a law prohibiting people with epilepsy from marrying was repealed in 1970. In some parts of the world, epilepsy is still commonly viewed as a reason for annulling marriages or simply prohibiting them. Thankfully, my husband did not contest our marriage. He continues to put up with me despite my messy behaviors and my epilepsy.

Epilepsy stigma and employment

Unemployment and underemployment among persons with epilepsy still exists worldwide. In the United States, the first law to prohibit discrimination against people with physical disabilities was passed in 1973.  However, this law had a limited scope, and it was not until 1990 that the passage of the Americans with Disabilities Act provided a more uniform remedy to persistent discrimination. It is important to note that many people are still fired or not hired due to fear about epilepsy and seizures.

How epilepsy stigma compares

Epilepsy today is where AIDS and Cancer was in the mid to late 80’s. The only treatments available treat the symptoms; nothing really resembling a cure. Doctors are still hesitant to talk about rescue medications and SUDEP despite the statistics. And those newly diagnosed stumble around in the dark for years until they find the confidence within themselves to reach out for support. (mmm, you can sense my frustration there a bit, huh?)

In the 90’s I worked for an AIDS organization that raised money from the cable industry and fed it into direct service organizations in NYC like God’s Love We Deliver (food delivery for the homebound). I remember photocopying the Dr. Ho as Time Man of the Year cover article and in my next job running subway ads for an AIDS clinic in downtown Manhattan. It never occurred to me these experiences would tie into my work in epilepsy advocacy.

Now for the interactive part

Take a minute to complete the 2022 Epilepsy Stigma survey. We did this in 2019 and I’m curious how attitudes have changed (if at all).

Take the 2022 Epilepsy Stigma Survey

Hope you take the survey.

Don’t miss tomorrow’s story in the Epilepsy Blog Relay™.

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