Epilepsy Stigma--What Role Do Movies and Music Play?

This post is part of the Epilepsy Stigma Blog Relay which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

We have made many advances in the treatment of epilepsy.  These include medications, diets, surgeries, and devices, just to name a few.  And scientists are continually researching new ideas. However, access to epilepsy treatment around the world is uneven.  Especially in developing nations, where knowledge of epilepsy is limited and any medical services are hard to come by, epilepsy is extremely difficult to deal with.  According to Sanjeev Thomas,
80% of the 50 million people with epilepsy in the world live in developing countries.¹  It is easy to see why the stereotypes of epilepsy still persist.  And this results in stigma.

Much of this stigma is perpetuated by the entertainment industry, specifically in the movies and music. Many times, there is a scene of a person faking a seizure to get a laugh or as a plot device, as in Oliver Stone’s “JFK” where someone feigned a seizure to make a distraction right before the assassination of President Kennedy.²

According Sallie Baxendale’s article “Epilepsy at the movies,” men are often portrayed as deranged killers or as having suffered post-traumatic disorder and epilepsy and rising above the situation as heroes.³

Women, on the other hand, are more likely to be helpless and exotic.⁴  In addition, epilepsy is used as a punishment or fatal flaw.  An example of this is “La Storia,” where a woman gets raped and as a result, she bears a child who has epilepsy.⁵

The world of popular music does not help the image of epilepsy either. Especially in the genres of hip-hop, heavy metal, and rap, the stereotypes of epilepsy include being contagious, related to sexuality, or just simply scary.⁶

All these influences from the entertainment world affect the quality of life for people with epilepsy.  They perpetuate false ideas about epilepsy, causing stigma. This stigma causes a drop in self-esteem, social withdrawal, and isolation, among other things.⁷

Although there are people who speak out for epilepsy awareness, it seems as though the message is not getting through to the general public.  Unlike Parkinson’s Disease who has Michael J. Fox and AIDS/HIV who has Magic Johnson, there is no one celebrity figurehead that people can identify as a spokesperson for epilepsy awareness.  That is not to say that there aren’t any candidates out there.  Greg Grunberg, known for his role on the TV show Heroes, is a big activist for epilepsy awareness.  In addition, former NFL running back for the New York Giants Tiki Barber and ice hockey player Chanda Gunn who led the women’s team to the bronze medal in 2006 speak on behalf of the Epilepsy Foundation. 

However, a massive media campaign needs to be launched.  Where everyone will see it.  I believe one flaw of the epilepsy education and awareness initiatives I’ve seen is that they often do not reach the general public.  One thing is certain:  this cannot be a one-time deal. 

If we just keep talking only among ourselves in the epilepsy community, nothing will change.  We need to put more efforts into educating our friends, neighbors, and society in general.  Only then will we be able to remove the stigma of epilepsy.

Any ideas of things to do to combat stigma and raise awareness to the general public?  Please share your thoughts!

References

1. Thomas, Sanjeev and Nair, Apama. Confronting the stigma of epilepsy.  Annals of Indian Academy of Neurology, 2011; 14(3):  online.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3200035/

2. Baxendale, Sallie. Epilepsy at the movies: possession to presidential assassination. Lancet Neurology, 2003; 2 : 768.  

3. Baxenale, 766.

4. Ibid.,767.

5. Ibid.,766.

6. Tuft, Mia and Nakken, Karl O.  Epilepsy and stigma in popular music.  Tidsskr Nor Legeforen. 2015: online.  http://tidsskriftet.no/article/3272683/en_GB

7. Thomas and Nair.

NEXT UP: Be sure to check out http://live-happier.com/blog/ for more in our series on Epilepsy Stigma. 

To see the full schedule, go to http://livingwellwithepilepsy.com/epilepsy-blog-relay-2015.