Open Letter: #seizurechallenge

If you haven’t heard of the #SeizureChallenge it is a Tik Tok fad that has people (mostly teens) uploading videos that include mock performances of convulsive seizures.

The Epilepsy community is not offended by videos about seizures. We know seizures. We live with them every day. Instead, we are offended by videos that show seizures as just “shaking” and not telling our whole story. We have made requests to both Tik Tok and the content creators to delete the videos. For weeks it looked like Tik Tok was far more interested in using the media attention that our requests made to further drive up play-counts. It was only until recently when the Epilepsy Foundation stepped in did Tik Tok commit to start removing these videos from their platform.

It is naive to assume that Tik Tok will be able to prevent the next wave of videos that include mock seizures. It is you, the parents of the teenagers that are creating these videos, to which we now appeal to see if we can make progress in further prevention. We believe that we actually are behaving in the best interests of your child. Hopefully, we can convince you to take a larger role in helping further prevention.

Maybe all one can do is hope to end up with the right regrets. 

Arthur Miller

Kids have done and will continue to do stupid things.

We were saved from the public embarrassment of our participation in past fads because we did not have the technology that your teens have. They have the technology available at their fingertips to broadcast their actions to be maintained for future people to peruse, laugh at, or even judge years later. The content written to the Internet is destined to be available forever. Remember ten years ago, when Tebowing, Vuvuzelas, or Planking were all trends? Google any of those fads and the images are still there. 

Kids cannot grasp the importance of long term consequences for the stupid things they do.

It is through experience that we understand consequences. That’s why we all do our best to impart to our children the qualities that we think they need to succeed. While your children’s main concerns now might be video clicks, likes, or body odor after high school gym class, we all know that the actions they perform now can have consequences down the line.

Kids hate it when older people get involved to ruin their fun.

As expected, we’ve been called “Karens” and “Gregs” for our open criticism of content creators participating in the #SeizureChallenge. What teen is really open to adults interfering in what they perceive as good-natured fun? 

We’ve also seen a disturbing, consistent, and growing pattern that shows that the reason for the pushback might lie much deeper than the initial “you’re too old!” reaction. When a person from our disabled community comes forward to describe why they think these videos are offensive, your children are not only refusing to remove the videos but also discounting the reasons offered. Suddenly, your child knows what is offensive and what isn’t to a community to which they do not belong. Any onlooker can see that this debate wreaks with privilege. 

During my two-decade career in Tech working for companies like Apple, Microsoft, eBay, and PayPal, one aspect of my job has always been recruitment and hiring of new candidates. While a background check is basically mandatory in the current marketplace, a simple search through public social media is growing ever so common.

In ten years’ time, a high-school-freshman will be twenty-four years old looking for that first real job straight out of college. A high-school-junior might be searching for that job that will take them from making coffee to making some real positive change. 

Unfortunately, in ten years’ time when your teen is looking for that career boost, it won’t be their peers that will have the opportunity to hire them. It might not even be us either. In fact, it will probably be those kids planking or tebowing ten years ago. If the #SeizureChallenge videos are present on the Internet, do you think that they will believe your teen has crossed the line?

How is the Epilepsy community fighting back?

After you have convinced your children to no longer upload their videos we invite you to join us. We have responded to tweets that promote mock seizures videos with #SeizuresAreDeadlySerious to highlight their dangers.

Unfortunately, one out of ten people will have a seizure in their lifetime. It is estimated that 65M people actively live with Epilepsy worldwide. Tragically, 55K people die to Epilepsy related deaths each year in the US alone.

Thanks for your help.

We hope that we have convinced you why we need your help to prevent further uploads of these types of videos on Tik Tok or any other platform. We look forward to any feedback in the comment sections below, via email social@brainablaze.com, or on Twitter @BrainAblaze