The Epilepsy Warriors – Part Two

As we’re partway through Epilepsy Awareness month, I wanted to acknowledge another round of Epilepsy Warriors who are addressing epilepsy and cyber-bullying across the Atlantic. 

In October 2020, Claire Keer launched a fundraising campaign for her son, Zach who has cerebral palsy and epilepsy. Zach had recently begun walking independently, so Ms. Keer signed him up for a 2.6-kilometer challenge walk. Ms. Keer launched an online fundraising campaign in conjunction with the Epilepsy Society, a British nonprofit that supports people with epilepsy. Ms. Keer sent a fundraising tweet to the Epilepsy Society’s followers, which raised almost $13,000 for the group. But pride in her valiant efforts turned to horror when she learned that an army of approximately 200 online trolls responded to her tweet by sending GIF’s of fast strobing images. About 3% of people with epilepsy are photosensitive, which means their seizures are triggered by visual stimuli that form patterns in time or space, including flashing lights, bold, regular patterns, or regular moving light patterns. Clearly these tweets were designed as an attack, and they were successful:  At least two Epilepsy Society followers had seizures when they saw the GIF’s.

Ms. Keer was so appalled by this vicious cyber-stalking that she spent the past two years lobbying for safety regulations. Working in conjunction with the Epilepsy Society, Ms. Keer got Member of Parliament, Kim Leadbeater’s backing to include Zach’s Law in England’s pending Online Safety Bill, which aims to establish regulations that address illegal and harmful virtual content. Zach’s Law makes it illegal to send flashing images via email or social media if a person with person with epilepsy might see them. Anyone found guilty would receive a maximum sentence of five years in jail. The Online Safety Bill is expected to pass in early 2023.

In America we also have had issues with cyber attackers targeting people with epilepsy. In 2019 the Epilepsy Foundation of America (EFA) experienced a very similar virtual assault.  A group of approximately 30 unidentified Twitter users posted flashing or strobing lights in response to EFA’s tweets, using popular epilepsy-related hashtags, attempting to cause seizures in EFA followers that have photosensitive epilepsy. The attack took place during November, National Epilepsy Awareness Month, when the greatest number of people with epilepsy were likely to follow the feed. “These attacks are no different than a person carrying a strobe light into a convention of people with epilepsy and seizures, with the intention of inducing seizures and thereby causing significant harm to the participants,” said Allison Nichol, Esq., director of legal advocacy for the Epilepsy Foundation. Where the EFA attack happened prior to the attack on the British Epilepsy Society followers, I can’t help but wonder if the British cyberbullies were emulating the American ones – a distressing thought.

In December 2019, the EFA filed a criminal complaint against the group of unidentified Twitter users for this coordinated attack on its feed. Their hope is to hold them fully accountable for their actions, but this will be difficult. In addition to the fact that the Tweeters were unidentified, America doesn’t have anything comparable to the Zach’s Law clause England is about to adopt in its Online Safety Bill. The American regulation that comes closest in 18 U.S. Code Section 2261A(2), which says it’s illegal for any person to engage in electronic communication that makes another individual reasonably fear death or serious bodily harm to themselves or another. Unlike Zach’s Law, the American regulation doesn’t explicitly make it illegal to send flashing strobe lights to an audience where people with epilepsy might see them.

The existing U.S. Code was proven ineffective in a 2017 case brought by the Department of Justice on behalf of journalist Kurt Eichenwald. Eichenwald was known to have epilepsy and was targeted by his Twitter followers after posting negative comments about then-candidate Donald Trump. Twitter follower John Rayne Rivello sent him a tweet with the words “you deserve a seizure for your posts,” surrounded by a strobe light. The tweet induced a seizure that incapacitated Mr. Eichenwald for days and prompted 40 other Twitter followers to tweet him strobe lights. Although this resulted in Rivello’s arrest, when the Department of Justice brought a case against him, it was ultimately dropped when Rivello’s attorney successfully argued that his tweet didn’t meet the federal definition of cyber-stalking, which requires“a pattern of electronic messages intending or threatening to cause serious bodily harm.”

Although I don’t have photosensitive epilepsy, I had uncontrollable seizures for decades. It is reprehensible to knowingly send triggers to those of us at risk for having seizures. Mr. Eichenwald’s attorney correctly likened it to “a terrorist who mails a bomb, or an envelope filled with anthrax.” The tweeters targeting Mr. Eichenwald and the EFA’s followers intended to inflict harm on their recipients.  We need a comparable Zach’s Law here in America, so we can hold these people accountable.