Tackling Online Abuse: Written evidence submitted by the Epilepsy Society on 13/10/2021 (TOA0020)

 

Zach’s Law: protecting people with epilepsy from online harms

(August 2021)

By the Epilepsy Society

 


Table of Contents

 

Introduction              3

Our campaign for Zach’s Law………………….……………………………………………………………………….…..4

 

Current Legislation……………………………………………………………………………………………………………….5

 

Online Attacks              6

  More on the impact of the attacks………………………………………………………………………………..………….9

 

  Our work with social media platforms……………………………………………………………………….……….9

 

  Technology from social media companies………………………………………………………………………..10

 

Background on Epilepsy              12

  Facts and Statistics of Epilepsy Globally              12

  Key Epilepsy Statistics for the United States of America              12

  Key Epilepsy Statistics for the United Kingdom              12

  The United States of America Online              13

  The United Kingdom Online              13

 

 

 

 


Introduction

 

In May 2020 Epilepsy Society, its followers and hashtags associated with epilepsy were subjected to one of the largest and most sustained cyberattacks on people with epilepsy through the social media platform, Twitter. In just one 24-hour period, the charity received hundreds of flashing images, each designed to trigger seizures in people with epilepsy.

 

This type of abusive behaviour is not new. Epilepsy Society has witnessed an increased number of malicious tweets in recent years, but these co-ordinated attacks are the worst it has seen and they are ongoing. The internet trolls continue to steal valuable time from the charity which is funded by people who bake cakes and jump out of planes. It is constantly threatening the safety, and in some cases, the lives of people with epilepsy.

 

Internet trolls target posts shared either by the charity, or its followers, talking about epilepsy and, most often, seizures. Dangerously, they also target popular hashtags, greatly increasing the reach and risk of the posts. They have focused on people who are celebrating a period of seizure freedom, sending them flashing GIFs in an attempt to trigger further seizures.

 

Epileptic seizures are not benign events. They can cause physical injuries including facial injuries, concussion, and, in extreme cases, can be fatal. One seizure can mean a person must rescind their driving licence with all the burden this carries in association with employment, education, social life, and independence.

 

In the May 2020 attacks, the trolls targeted an eight-year-old boy, Zach Eagling, who has epilepsy and cerebral palsy. Zach (now ten-years-old) had just learned to walk unaided and was inspired by Captain Sir Tom Moore who raised money for NHS Charities Together by completing one hundred 25-metre laps of his garden as part of his 100th birthday walk. Zach in the same spirit was raising money for Epilepsy Society by walking 2.6km in his back garden.

 

His mum, Claire Keer, posted a video of his progress on her Twitter account and the trolls responded with flashing GIFs intending to cause seizures. Zach was not harmed but others were not so lucky; these attacks caused people across the globe to have seizures.

 

Several people have reported seizures as a result of posts, including a 25-year-old man who had been newly diagnosed with epilepsy. His friends directed him to Epilepsy Society’s Twitter account for peer support and well-researched, trusted information. Instead, he was confronted with a flashing image causing him a serious tonic clonic seizure. He bit through his tongue and has been psychologically traumatised.

 

There have also been instances of this vile behaviour being undertaken on other social media platforms. On Instagram, one person with photosensitive epilepsy was targeted by a troll who had messaged pretending to be asking for professional advice, only to send them a covert link to a strobing video. They had duped our beneficiary by setting up an account with a fake name relevant to the person with epilepsy’s industry..

 

Our campaign for Zach’s Law

 

Before social media, we do not believe this type of abuse existed where a group of people with an invisible disability could be identified and targeted to cause them physical harm. This is a new phenomena born out of global communities where people can operate behind hidden identities, using new technology to provoke seizures and cause bodily harm. For this reason, we do not believe that current legislation is equipped to deal with a crime that 15 years ago would have been deemed unimaginable.

 

We have been campaigning for this issue to be addressed in the UK Government’s Online Safety Bill since April 2018. We are asking the UK Government to:

 

  1. Include the knowing dissemination of online material capable of causing a seizure in the definition of an ‘online harm’ in online safety legislation;
  2. Compel social media companies to tackle this behaviour on their platforms;
  3. Clarify the law by making this behaviour a specific criminal offence which is outlined in online safety legislation and reflects the impact on victims;
  4. Give guidance and instruct the Crown Prosecution Service on how best to prosecute this behaviour so that the perpetrators can be successfully brought to justice.

 

We are calling the new legislation “Zach’s Law”, after ten-year-old Zach Eagling.

 

For many people with epilepsy, social media offers a lifeline, enabling them to connect with others who share an understanding of the issues that accompany a life punctuated by seizures. People affected by the condition can offer each other 24-hour peer support, with shared experiences helping to lessen the loneliness of this condition. But people must feel safe online especially when they are in their own homes. Social media by its very nature is informal and user-generated.  That is its joy and its danger.

 

Large international companies should not rely on individuals or charities to police their platforms. Twitter, Facebook, Instagram and others must ensure their platforms are safe and inclusive places to share content, ideas, and friendship, without any fear of harm.

 

Throughout the COVID-19 pandemic, spending time online has been a necessity and the criminal law must protect us from an invisible enemy. It is unthinkable that people who hide behind pseudonyms are releasing their own digital virus as a form of warped entertainment with the potential to hurt people with disabilities.

 

That is why we are asking the UK Government to adopt Zach’s Law to ensure that people with epilepsy are protected online and that the law is made clearer to bring perpetrators to justice.

 

 

 

 

Current Legislation

 

We are not aware of any successful prosecutions in the United Kingdom in relation to the deliberate dissemination of material online capable of causing a seizure. We have been advised by the police that current legislation applicable to this behaviour is the Malicious Communications Act 1988, which would treat such behaviour as harassment.

 

However, harassment does not reflect the nature of the crime or the physical impact of the crime which could be fatal in extreme circumstances. This is why we have been campaigning for Zach’s Law to be introduced.

 

Currently, no specific offence exists within law to criminalise the online dissemination of flashing images with the intent to cause a seizure in people with epilepsy. The Draft Bill itself does not name this as an offence. The Law Commission themselves state:

 

The last two decades have seen a revolution in communications technology. The rise of smartphones, the internet and social media has offered extraordinary new opportunities to engage with one another – to share ideas, to learn, and to debate – and on an unprecedented scale. However, there is also increased scope for harm. The criminal law has not kept pace with these changes.” (21 July 2021, Introduction to Summary of Modernising Communications Offences, pg2)

 

In July 2021, the UK Law Commission recommended a specific offence to deal with flashing images posted on social media to trigger seizures in people with epilepsy.

 

In its report "Modernising Communications Offences", commissioned by the government, the Law Commission recommends creating a specific offence to be enshrined in law that will tackle this problem.

 

The Commission states: "We recommend that the intentional sending of flashing images to a person with epilepsy with the intention to cause that person to have a seizure should be made an offence." (Modernising Communications Offences, 21 July 2021, pg 123, Recommendation 6)

 

This is a hugely welcome recommendation, and one for which the Epilepsy Society has been campaigning. But a recommendation is not enough. This recommendation must become law.

 

Ofcom regulations require that TV programmes and news stories have a warning if there is going to be a high level of flashes in the programme. The Health and Safety Executive recommends that strobe lighting in clubs or at public performances, flashes at a maximum rate of four hertz or less.

 

If the Government follows the Law Commission’s recommendation, this would bring social media companies under similar restrictions around flashing GIFs and videos.

 

Zach’s Law would make social media a safe and accessible place for people with epilepsy. These proposals mean that people with epilepsy can participate in the online community and reach out to others for support. Zach’s Law would mean that social media companies can no longer rely solely rely on individuals or organisations to police their platforms for them.

 

We would like to work with the UK Government, Law Commission, Civil Service, international companies, and any other body involved in online safety legislation and regulation.

 

Online Attacks

 

On 13th May 2020, Epilepsy Society’s Twitter account was subjected to an attack that lasted 48 hours. We and our followers were subjected to over 200 posts with flashing GIFs and posts with violent and pornographic content. Many people who commented on our posts were sent flashing GIFs publicly and through private messages. Our Twitter account had over 27,000 followers.

 

We have continued to see attacks against people with epilepsy online since this date, with flashing images and troll activity still being a regular occurrence. Below are some static examples of screenshots from the attacks:

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 S:\Fundraising & Marketing Shared Access\Social Media\Online Harms Evidence\Attack 17 June-20200617T144429Z-001\Attack 17 June\Screenshot 2020-06-17 at 15.20.14.png

 

 

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