Epilepsy and Media

Last week Netflix released their newest movie, “The After Party,” a film that chronicles the story of an aspiring young rapper suffering with epilepsy.

Struggling to make it in the music industry, he gains notoriety when he has a seizure on stage and the video of the event goes viral. The portrayal of the seizure itself is inaccurate, but more troubling is the way the film chooses to make the diagnosis of epilepsy comedic.

Fans of the rapper begin to refer to him as “seizure boy” and even create a ridiculous dance to mock the seizure he had on stage. The official website for the film states “the young rapper with big dreams has one night to bounce back from major embarrassment.”

The fact they label the event of having a seizure in public as an embarrassment only feeds further bias and ridicule for those that suffer from epilepsy. Given 1 in 26 people will suffer from epilepsy in their lifetime, it is a diagnosis every person should be familiar with. It is unfortunate in this day and age, there is still so much misunderstanding, misrepresentation, and stigma for those with epilepsy. Media has the power to educate and raise awareness on a scale unlike any other, yet media has a long history of feeding bias, fear, and confusion about epilepsy.

What is the history of epilepsy in media?

Epilepsy and people with seizures have been represented in film for many years. An analysis of characters with epilepsy since the 1950s show that most characters are portrayed as sad, damaged individuals that are feared and often linked to psychiatric disease.⁽¹⁾ 

The seizures shown on film are almost always convulsive type and violent, though that represents only a small subtype of seizures. This inaccurate portrayal has not improved with time. An analysis of epilepsy in film since 2004 showed almost all seizures depicted remained convulsive type and most were uncontrolled, yet in reality 70 percent of patients gain control of their seizures with medication.⁽²⁾

When simple seizure first aid was delivered in film, 96 percent was performed by a healthcare professional, yet inappropriately provided in 57 percent of the cases. In 97 percent of the portrayals, the cause of the epilepsy was known, though in reality only about 30 percent of epilepsy has a defined cause. These inaccurate depictions set unrealistic expectations for patients, but more importantly teach inappropriate behaviors for those that may be called on to help a person having a seizure in public.

Print media doesn’t fare much better. Newspapers covering neurological conditions were found to utilize stigmatizing language in 21 percent of their stories, and epilepsy represented the most commonly represented diagnosis (30 percent). ⁽³⁾

The advent of social media has taken the ability to marginalize those with epilepsy to another level. Consider this, the internet has become to “go-to” source for medical knowledge with  more than 60 percent of adults reporting they search for medical information on the web – many people using social media sites like Twitter, YouTube, and Facebook to find information.

One would hope user generated information on these platforms would be more accurate and sympathetic, but is it? A seven day analysis of “tweets” related to seizure(s) found over 10,000 tweets.⁽⁴⁾ Of these, nearly 10 percent were written specifically to ridicule and over a third were metaphorical – that is comparing abnormal movements to “seizures” much like the way the “seizure dance” is portrayed in “The After Party.” Overall, 41 percent of tweets were considered derogatory. YouTube videos suffer from inaccuracy as well, with up to a third of videos labeled to depict seizures clearly depicting non-epileptic events – again spreading misinformation. ⁽⁵⁾ In addition, up to 10 percent of videos related to epilepsy/seizures can been labeled as inaccurate or derogatory. ⁽⁶⁾

So much work remains to raise epilepsy awareness throughout the world. Media presents a unique and powerful resource to educate the public on this common condition, its varied presentations, the availability of treatments, and the appropriate response to a person having a seizure. Increased awareness will hopefully erase fear, inaccuracies, and bias towards those with epilepsy.

When films like “The After Party” are created in the name of “entertainment”, they do nothing more than increase the stigma for those with epilepsy, erasing all we in the epilepsy community work to alleviate each day.

References

1. Kerson JF, Kerson TS, Kerson LA. The Depiction of Seizures in Film. Epilepsia 1999 40(8):1163-1167.
2. Moeller AD, Moeller JJ, Rahey SR, Sadler RM. Depiction of Seizure First Aid Management in Medical Television Dramas. Can J Neurol Sci 2011 38(5):723-7.
3. Caspermeyer JJ, Sylvester EF, Drazkowski JF, Watson GL, Sirven JI. Evaluation of Stigmatizing Language and Medical Errors in Neurology Coverage by US Newspapers. Mayo Clin Proc 2006 81(3):300-6.
4. McNeil K, Brna PM, Gordon KE. Epilepsy in the Twitter Era: A Need to Re-Tweet the Way We Think About Seizures. Epilepsy Behav 2012 23(2):127-30.
5. Brna PM, Dooley JM, Esser MJ, Perry MS, Gordon KE. Are YouTube Seizure Videos Misleading? Neurologists Do Not Always Agree. Epilepsy Behav 2013 29(2):305-7.
6. Wong VS, Stevenson M, Selwa L. The Presentation of Seizures and Epilepsy in YouTube Videos. Epilepsy Behav 2013 27(1):247-50.