Saturday, September 15, 2018

Seizure boy

I'll never forget the time my son was mocked as "seizure boy" in elementary school. The kids created a game called "Billy Touch": If you got tagged, you had seizures.

All these years later, it still hurts.

Adults with seizure disorders fear losing their jobs. Children with epilepsy fear losing their friends. They all fear being ridiculed.

That's what makes Netflix's depiction of seizures in its new film "The After Party" so shocking. The online streaming service's deafening silence since the movie's August 24 release has done little to quiet the controversy.

In the movie, the main character has a seizure while rapping on stage. He vomits and writhes, a moment captured on video that goes viral. He gets dubbed "Seizure Boy," and soon everyone is doing a #SEEZJAHBOY dance.

The film treats seizures like the dab. Like the Electric Slide.

The movie has outraged the epilepsy community like little else.

"The way seizures are portrayed in the film only adds to the ignorance, misunderstanding and fear that exist about seizures. This Netflix film harkens back into the Dark Ages," Phil Gattone, president of the Epilepsy Foundation, said in a written statement.

Gattone said he reached out to Netflix in hopes of working with it to produce a public service announcement about seizure disorders that could be played at the end of the movie or posted on Netflix's digital outlets. He never heard back.

The Epilepsy Foundation is now planning to seek a grant to create the PSA from a fund started by Netflix founder Reed Hastings. Gattone said it would use "the 'seizure boy' missteps as an opportunity to empower kids with epilepsy and prevent bullying."

He called the movie a "serious affront to our community when so-called entertainment mocks or jokes about having epilepsy or seizures" -- a sentiment echoed by many advocates across social media.

"Implying that seizures are an ok thing to bully someone about is unacceptable," tweeted Kelly Cervantes, whose baby daughter has a debilitating form of epilepsy and who has become a powerful advocate for those with seizure disorders.

In a lengthy thread, Cervantes went on to say, "I can't believe I'm typing this but naming someone seizure boy or girl is unacceptable." She invited the producers and the creative team of "The After Party" to come to her home to hold her daughter "while she screams during one of her daily seizures."

"Epilepsy and seizures are no joking matter," Cervantes wrote.

Dr. M. Scott Perry, a pediatric neurologist and medical director of neurology at Cook Children's Medical Center in Fort Worth, Texas, blasted Netflix for doing "nothing more than increase the stigma for those with epilepsy, erasing all we in the epilepsy community work to alleviate each day."
"It is unfortunate in this day and age, there is still so much misunderstanding, misrepresentation, and stigma for those with epilepsy," Perry wrote in a piece distributed by his hospital.

As the father of a boy with epilepsy, I watched the movie trailer and found it hard to stomach. It was made more difficult because of my son's own version of being teased as "seizure boy."

Like Cervantes tweeted, a seizure is no joke.

When I take my son to the swimming pool, I'm on edge, wondering whether Billy will seize in the water and die in my arms. On a recent beach trip, my wife decided that parasailing was worth trying, because if the worst happened, "he at least will die with a smile on his face." A fun outing at a sporting event can get upended in a second if Billy seizes amid 70,000 people.

Billy's older sister put it this way in a documentary about people with epilepsy: "Don't make fun of people for it. Just don't."

I wanted to know why Netflix thought it was OK to portray people with seizure disorders like it did, and I wanted to hear how it would respond to the controversy within the epilepsy community.

But like Gattone at the Epilepsy Foundation, I never got a response. Attempts to reach writer and director Ian Edelman also were unsuccessful.

More than 3 million Americans, including 450,000 children, have epilepsy. Many live full and productive lives, while for others, the seizure disorder is debilitating, affecting cognitive abilities and almost all aspects of their lives…

University of Minnesota football coach Jerry Kill had to give up his dream of coaching big-time football when his seizures could no longer be controlled. He had just earned Big Ten Coach of the Year honors.

He well knows the stigma people with epilepsy face. "We've got a freak coaching the Minnesota Gophers," a fan once emailed him. Another time, after he had a seizure on the field during a game, a columnist wrote that he should be fired because fans don't pay money to be "rewarded with the sight of a middle-aged man writhing on the ground."

My son and Kill have become close friends since I told their stories in a story for CNN four years ago. At a recent party for the coach that doubled as a fundraiser for the Epilepsy Foundation, Billy took the microphone from Kill.

Ever since his seizures started in May 2011, Billy has only had three months seizure-free. Lately, his seizures strike nearly every day.

He told the crowd of having seizures in the grocery store, at school, of falling down stairs and thinking he would no longer be able to walk. He spoke of riding in ambulances and staying in hospitals.

"It just kind of sucks," he said.

He paused before finishing with "yeah, it sucks."

My son is just 14, but he has helped raise more than $300,000 for people with epilepsy.

Maybe Netflix will consider helping the cause instead of ridiculing.

Courtesy of Doximity


  1. Members of our community have expressed concerns about the inappropriate and negative portrayal of people with epilepsy and seizures in the new Netflix film, “The After Party.” The main character is nicknamed "Seizure Boy" and everyone makes fun of him because he has a seizure. The film inaccurately portrays seizures and people who experience seizures. Epilepsy is a neurological disorder and people with epilepsy may experience hundreds of seizures a day.

    Making fun of someone having a seizure is bullying at its worst. When such responses are portrayed as acceptable behavior – even in movies – it is demeaning and hurtful to our epilepsy community and all of us. In fact, such treatment can put real people who have seizures at increased risk of injury and death. If someone is ridiculed for a medical problem, such as seizures, they are more likely to hide their illness and less likely to seek medical care or the help of others.

    While we welcome opportunities to portray real stories of people with epilepsy in movies and in the media, it is a serious affront to our community when so-called entertainment mocks or jokes about having epilepsy or seizures.

    For decades, and in partnership with the U.S. Centers for Disease Control and Prevention for 17 years, the Epilepsy Foundation has developed and activated nationwide programs to promote public education about epilepsy, seizure recognition and how to administer Seizure First Aid.

    Unfortunately, the film does not educate people about seizures or provide information on what to do if someone sees a person having a seizure. The way seizures are portrayed in the film only adds to the ignorance, misunderstanding and fear that exist about seizures. This Netflix film harkens back into the Dark Ages.

    We have reached out to Netflix and hope to work with them to ensure that seizures are accurately depicted in future projects and that Netflix includes an education component about seizure recognition and Seizure First Aid.

  2. 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...

    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. 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. In addition, up to 10 percent of videos related to epilepsy/seizures can been labeled as inaccurate or derogatory.

  3. Brna PM, Dooley JM, Esser MJ, Perry MS, Gordon KE. Are YouTube seizure videos misleading? Neurologists do not always agree. Epilepsy Behav. 2013 Nov;29(2):305-7.

    The internet has become the first stop for the public and patients to seek health-related information. Video-sharing websites are particularly important sources of information for those seeking answers about seizures and epilepsy. Because of the widespread popularity of YouTube, we sought to explore whether a seizure diagnosis and classification could reliably be applied. All videos related to "seizures" were reviewed, and irrelevant videos were excluded. The remaining 162 nonduplicate videos were analyzed by 4 independent pediatric neurologists who classified the events as epilepsy seizures, nonepileptic seizures, or indeterminate. Videos designated as epilepsy seizures were then classified into focal, generalized, or unclassified. At least 3 of the 4 reviewers agreed that 35% of the videos showed that the events were "epilepsy seizures", at least 3 of the 4 reviewers agreed that 28% of the videos demonstrated that the events were "nonepileptic seizures", and there was good agreement that 7% of the videos showed that the event was "indeterminate". Overall, interrater agreement was moderate at k=0.57 for epilepsy seizures and k=0.43 for nonepileptic seizures. For seizure classification, reviewer agreement was greatest for "generalized seizures" (k=0.45) and intermediate for "focal seizures" (k=0.27), and there was no agreement for unclassified events (k=0.026, p=0.2). Overall, neurology reviewer agreement suggests that only approximately one-third of the videos designated as "seizures" on the most popular video-sharing website, YouTube, definitely depict a seizure. Caution should be exercised in the use of such online video media for accessing educational or self-diagnosis aids for seizures.