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:
- Include the knowing dissemination of online material capable of causing a seizure in the definition of an ‘online harm’ in online safety legislation;
- Compel social media companies to tackle this behaviour on their platforms;
- Clarify the law by making this behaviour a specific criminal offence which is outlined in online safety legislation and reflects the impact on victims;
- 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:
More on the impact of the attacks
A number of people in this country and in other countries have reported seizures triggered directly by the attacks.
- “The last time I replied to a tweet from the Epilepsy Society, I got a message from an individual...I opened it and got hit with this person’s attack of a strobe message that set me off with four Generalized Seizures.”
- “The malicious evil attacks by people posting flashing images intended to cause seizures are beyond reprehensible. It is a physical assault on people struggling with epilepsy. Inadvertently viewing one of these images triggered a simple partial seizure for me. This is not a joke. Seizures can be fatal.”
- Sophie's Story: She was diagnosed with photosensitive epilepsy when she was 15 years old and now works as a dietician in Somerset. She explains how going to university with photosensitive epilepsy was a significant struggle as she had to avoid social media and strobe lighting. A significant amount of shared content can cause problems for people with photosensitive epilepsy.
Our work with social media platforms
We reported the individual Twitter accounts and posts through Twitter’s reporting system. However, Twitter’s response was not rapid enough, and as a result, the posts were left up for a considerable amount of time which meant that people with epilepsy were being put at risk of harm.
Twitter is now working with us directly to manage the attacks that happen but does not yet have a pro-active mechanism of preventing the attacks. We have held a series of meetings with Twitter about our issues and our proposals. We now have a direct contact at Twitter and we flag when an attack starts so that Twitter’s security team can take the tweets and accounts down rapidly. Additionally, Twitter has removed all GIFs and banned the search terms ‘epileptic’, ‘photosensitive’, and ‘photosensitivity’ in their GIF library.
Twitter have also donated £7,500 to the Epilepsy Society as a recognition of the charity resources spent on dealing with trolling on their platform.
GIPHY
A bespoke fast-track flashing image reporting line has been created for the charity to be able to work with GIPHY efficiently to locate malicious or harmful content. GIPHY have deleted GIFs within their library that Epilepsy Society identified are used frequently by the trolls.
Furthermore, GIPHY have introduced additional moderation practices to reduce the availability of harmful content in the library.
The charity’s social media team have also raised concerns with the GIF library Tenor about similar issues.
TikTok
Epilepsy Society raised concerns with TikTok around harmful content on the platform after being alerted by the charity’s supporters to strobe video effects and ‘seizure challenge’ trends.
In January 2021, TikTok launched a filter that allowed users to block and remove content from their feed that included a TikTok effect which had the potential to trigger seizures.
Where we welcomed this feature, unfortunately it does not go far enough to protect users with epilepsy. Many videos containing strobing effects that are added outside of TikTok exist on the platform. These videos therefore are not picked up by the new filter and so still pose a risk to people with photosensitive epilepsy.
We have had initial meetings with Facebook about this issue, also hoping to use this as a channel to connect with Instagram.
Facebook were sympathetic to the issues facing people with epilepsy, however could not commit at this stage to develop an algorithm to detect and prevent the dissemination of flashing content.
Technology from social media companies
Epilepsy Society is a UK-based charity and although our research involves international collaboration, our advocacy has focused on political engagement in the UK. However, we recognise that these online attacks affect people with epilepsy around the world. That is why we want to work collaboratively with international companies such as Twitter, GIPHY, Tenor, TikTok, Instagram and Facebook.
We hope that the UK Government will bring Zach’s Law into force by including the Law Commission’s recommendation in the Online Safety Bill, but this unfortunately will only partly tackle this issue.
Whilst the perpetrators must be brought to justice after the crime is committed, the damaging effects of a seizure are felt immediately by the victims of an attack. Additionally, whilst our campaign’s focus has been on criminalising the behaviour of internet trolls, we recognise that many flashing images on social media are not posted with malicious intent. These images, however, can still pose a tangible risk of triggering a seizure.
Therefore, we believe that tackling flashing images at their source is the only true way to ensure that social media is a safe place for the 2 million people with photosensitive epilepsy worldwide. It will also protect users who innocently post content, unaware of the danger it could pose to someone who is photosensitive.
It is morally unjustified that social media companies profit without taking sufficient action to protect these people with disability from real physical and psychological harm on their platforms.
We are calling on all social media companies to take urgent action to develop technology that can identify and block photosensitive content. At the Epilepsy Society, we are using AI to teach computers to pick up structural abnormalities on brain scans, that are not visible to the human eye. Therefore, we believe social media companies have the expertise and resources to develop flashing image detection to protect their users, in their already hugely sophisticated algorithms.
Find all of the latest updates on our Zach’s Law campaign at https://epilepsysociety.org.uk/zachslaw or follow #ZachsLaw
Background on Epilepsy
Facts and Statistics of Epilepsy Globally
- 65 million people have epilepsy around the world
- Approximately 2 million people have photosensitive epilepsy (when seizures are triggered by flashing lights or contrasting light and dark patterns)
- 5 million people are diagnosed with epilepsy every year, a quarter are children
- Risk of premature death is 3 times higher than the general population
- Epilepsy has significant economic implications in terms of health-care needs, premature death and lost work productivity
- Health costs and productivity losses create substantial burdens on households
- People with epilepsy around the world face barriers to education, the ability to marry, health care, work, and driving
- More than 75 percent of people living in developing nations don’t receive the treatment they need for their seizures
Key Epilepsy Statistics for the United States of America
- 3.4 million people in the United States have epilepsy
- Approximately 470,000 children in United States have epilepsy
- 150,000 people are diagnosed with epilepsy every year
- Over 100,000 people have photosensitive epilepsy in the United States
- It is the 4th most common neurological problem
- More people live with epilepsy than those with autism spectrum disorders, Parkinson’s disease, multiple sclerosis, and cerebral palsy combined
- Epilepsy in the United States occurs more frequently in people who are Hispanic than people who are not Hispanic
- 1 in 3 people with epilepsy also experience depression and anxiety
- People with epilepsy are 22 times more likely to die by suicide
Key Epilepsy Statistics for the United Kingdom
- 600,000 people have epilepsy in the UK which is approximately 1 in 103 people
- 1 in 50 people will have epilepsy at some point in their life
- It is the most common serious neurological condition
- On average 1 child in every primary school and 5 children in every secondary school have epilepsy
- 3% of people with epilepsy have photosensitive epilepsy
- 5% of young people with epilepsy have photosensitive epilepsy
- 3-30 hertz are common rates to trigger seizures for people with photosensitive epilepsy, although some people are sensitive up to 60 hertz
- Geometric patterns, stripes, bars, and contrasts with light and dark patterns are also common triggers for people with photosensitive epilepsy
- Over 1,000 people die every year from epilepsy of which 500 are from Sudden Unexpected Death in Epilepsy (SUDEP)
The United States of America Online
- 90% of 18-29 year olds use social media
- 82% of 30-42 year olds use social media
- 71 % of social media users use Twitter daily or weekly
- 91% of social media users use Facebook daily or weekly
- 93% of Millennials, 90% of Gen Xers, 68% of Baby Boomers, and 40% of the Silent Generation own smart phones
- 86% of Millennials use social media, this has remained stable since 2012 but the number of Gen Xers, Baby Boomers, and those of the Silent Generation using social media has increased by 10% during this period
- The number of Facebook users from the Silent Generation using the platform has doubled in the past 4 years
- Americans were also less positive about the societal impact of the internet than they were four years ago
The United Kingdom Online
- Adults spend an average of 3 hours and 15 minutes a day online, this surged to 4 hours a day online during the UK’s coronavirus lockdown
- 99% of 16-44 year olds use the internet daily
- Children and young adults spend more time online than they do watching television
- Nearly half of 12 year olds have a social media profile
- 100% of 16-24 year olds go online daily and 98% use social media
- 70% of adults support stricter regulation of social media sites
- 70% of adults have a social media account
- 1 in every 5 minutes spent online is on social media
- Videos accounted for 70% of UK internet traffic with 1 in 3 adults watching more videos online than television and 2 in 5 make videos themselves
- Adults are more likely to send and receive messages using online messaging platforms than they are by text
- According to Ofcom social media sites, such as Facebook and Twitter, are the most-commonly cited source of online harm
Sources: Ofcom: Online Nation 2019 Report, Office for National Statistics 2019 Data Set,
Ofcom: UK Internet Use Surges, World Health Organization, Epilepsy Foundation,
Healthline, Pew Research Centre, Epilepsy Society
14