Let’s take a step back for a second from us here in the United States, and compare how the rest of the world feels about epilepsy. How well do you think we stand in comparison to other countries in terms of the stigma that face people with epilepsy?
It’s sad to say that social stigma is common for epilepsy in many regions of the world. In countries such as Cameroon, Liberia, and Nepal, it is a common belief that dark forces lie behind the cause of seizures. Either there are signs of demonic possessions in people who are “weak“, or it is the side effect of messing around with sorcery. In Uganda, as well as many other countries, people with epilepsy are not allowed to eat from the communal food pot for fear of transmitting the condition through saliva. Marriages can be nulled, in China and India, if one spouse was found to be epileptic, and in just 1996, in the Netherlands, a person was whipped and placed in isolation because people believed her seizures were due to magic. Absolutely ridiculous, wouldn’t you say?
How does the United States measure up? Social stigma is still prevalent in many aspects of the American life. In general, there is a reluctance for people to open up about their condition for fear of embarrassment and being treated differently. If we look at our history, there was a time when many states even prohibited people with epilepsy from marrying. The last state to remove this law did so only in 1980! (In the UK they repealed a similar prohibitive marriage law in 1970) In addition, up until 1970, many restaurants, theaters, and public places were legally allowed to deny people with epilepsy. Crazier still, our country’s history shows 18 states that provided eugenic sterilization of people with epilepsy until the ’60s. Back then, it was considered normal for the state to go through with compulsory (forced) sterilization for criminals, the mentally ill, and minority groups.*
People with epilepsy all around the world face economic problems as well. In countries such as India, Nepal, and many others, people with epilepsy are given fewer roles and are viewed almost as burdens by their families. As a result, epileptic people tend to underrate themselves and throw away their potentials. In China, 31% of people believe that people with epilepsy shouldn’t hold jobs. In Germany, Italy, and the United States, statistics show that of the people with epilepsy of working age, only 40-60% are able to find jobs, usually in positions below their potential, 15-20% are unemployed, and 20% retire early. According to the World Health Organization, it is difficult because epilepsy tends to “affect people when they are young at ages when they are most productive, often leading to unavoidable unemployment.”
And so, although some people may believe that the superstitions and stigmatism of other countries seem ludicrous and outlandish…if you take a closer look, you may realize that we may all be in the same boat. However, it is in hopes that by shedding light on the discrimination that epileptic people have faced to drive us to push towards greater movements against the stigma. Educate yourselves and spread the word.
*In case you were interested, the sterilization of minority groups continued well into the 70s, with California being the lead state by more than double the statistics. Even just recently from 2006-2010 it was discovered that California Institution for Women in Corona had 148 women sterilized by being pressured or not given the proper information – all procedures violating the legal protection these women had (http://cironline.org/reports/female-inmates-sterilized-california-prisons-without-approval-4917). Absolutely disgusting.
World Health Organization. February 2001. “Epilepsy: Social Consequences and Economical Aspects.” Retrieved Oct 12, 2013 from https://apps.who.int/inf-fs/en/fact166.html.
University of Vermont. April 2009. “Eugenics: Compulsory Sterilization in 50 American States.” Retrieved Oct 12, 2013 from http://www.uvm.edu/~lkaelber/eugenics/.