Written evidence submitted by the Epilepsy Society

Call for evidence: Epilepsy Society

The Epilepsy Society are the UK’s only charity transforming the lives of people with epilepsy through world-leading research, advocacy and care. Epilepsy is not just one condition, but a group of many different 'epilepsies' with one thing in common: a tendency to have seizures that start in the brain.

We are currently campaigning against the online trolling of people with epilepsy, specifically the sending of flashing images and GIFs which are used by internet trolls to try and trigger seizures. We are calling on the government to make the “deliberate dissemination of flashing images with the intent to cause a seizure” a criminal offence in the forthcoming Online Safety Bill.

1. How has the shifting focus between ‘online harms’ and ‘online safety’ influenced the development of the new regime and draft Bill?

When drafting legislation, it is vital to ensure that terminology is both accurate and explicit. This seems to be especially relevant when legislating on issues relating to physical and psychological abuse. While the terms "online harms" and "online safety" have been used somewhat interchangeably in previous discussions, it is to be welcomed that the new legislation will refer specifically to "online safety." By definition, a "harm" has already happened. "Safety" is a more appropriate term which offers a holistic view and appears to be more focused on prevention, rather than reacting to an already experienced "harm."

2. What are the key omissions to the draft Bill, such as a general safety duty or powers to deal with urgent security threats, and (how) could they be practically included without compromising rights such as freedom of expression?

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. Unfortunately, the Draft Bill itself does not name this as an offence. The Epilepsy Society, therefore, is concerned that the Bill does not go far enough in safeguarding people with epilepsy.

We welcomed the Law Commission's recommendation, in their Modernising Communication Offences report, to criminalise this specific type of bullying. This followed an extensive consultation period and thorough review by the Law Commission of existing communications legislation.

The recommendation 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 (21 July 2021, pg 123, Recommendation 6)

We wholeheartedly back this recommendation and are calling on the government to include this in the final version of the Online Safety Bill.

The internet, specifically social media, can be a dangerous place for people with epilepsy. Sadly, the stigma, and in some cases abuse, that people with this condition face in their daily lives often continues online. Indeed, it can be magnified.

In May 2020, there was a sustained and coordinated attack by internet trolls on the Epilepsy Society's Twitter account and the accounts of many of our followers. Sadly, this was not the first such attack, or the last. It was, however, the most sustained and vicious.

As part of this attack, hundreds of flashing images and GIFs were posted by people seeking to trigger seizures in people with photosensitive epilepsy. This was done both publicly and via private messages. These malicious posts continue to this day. One of the victims of the attacks was then 8-year-old Zach Eagling, who has epilepsy and cerebral palsy. Zach was targeted while undertaking a charity walk to raise money for people with epilepsy. It is in his honour that we have named our campaign against online trolling, "Zach's Law."

In the aftermath of the attack, it was immensely frustrating to discover that existing legislation including the Malicious Communications Act 1988 and the Communications Act 2003 did not provide adequate redress for victims of this malicious bullying. Clearly, the way people communicate has changed in the last two decades. It is imperative that legislation keeps up with the challenges facing society in the 21st century. 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)

Before social media, we do not believe this type of abuse existed where a group of people with an invisible disability could be targeted to cause them physical harm. This is a new phenomenon born out of global communities where people can operate behind hidden identities, using new technology to provoke seizures and cause bodily harm. We believe epilepsy to be unique in that a group of people can be targeted with a technology that could cause both physical and psychological 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 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 the 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 act which could be fatal in extreme circumstances. The impact is no different from assault that happens offline, but it is prosecuted differently. This must change.

The Epilepsy Society are strong advocates of freedom of expression. We would argue that where flashing images are sent to a person with epilepsy with the specific intent of causing a seizure the recipient's own freedom of expression is restricted, as they will henceforth be less willing to use social media – a space that ought to be open for all people, free from the fear of abuse. 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 living with epilepsy. 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. If a person with epilepsy feels reluctant to use social media due to fear of being attacked, their own options for freedom of expression become increasingly limited.

3. Is it necessary to have an explicit definition and process for determining harm to children and adults in the Online Safety Bill, and what should it be?

"Harm" itself is a difficult concept to prove. What one person finds harmful may not necessarily cause harm to another. This is especially the case when dealing with psychological harm. When it comes to epilepsy, there is however, a clear definition – one the Epilepsy Society has been promoting for many months. Where flashing GIFs and images have been sent to people with photosensitive epilepsy, there is significant evidence of the recipients of the images suffering seizures – a medically recognised condition. One example is of 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 information. Instead, he was confronted with a flashing image causing him a serious convulsive seizure. He bit through his tongue and has been psychologically traumatised. This is not an isolated incident. There have been many cases around the world, reflecting the fact that social media is a global platform.

The Epilepsy Society supports the Law Commission's recent recommendation, published in their Modernising Communication Offences report, which states:

We believe that this would serve as both an accurate, and explicit, definition of intent to cause harm in relation to epilepsy.

4. What are the lessons that the Government should learn when directly comparing the draft Bill to existing and proposed legislation around the world?

There is much to be praised in the Draft Online Safety Bill. We welcome the confirmation of Ofcom as the regulator for online communication. The promise of fines of up to £18 million or 10 per cent for social media companies which do not meet Ofcom's standards is also an important step in the right direction, and the pledge that platforms will be expected to act against not just illegal but also "legal but harmful" content is to be welcomed.

We also support the proposal for senior managers of social media companies to be made criminally liable for any breach of regulation. One of the greatest barriers to increasing the safety of social media platforms has been the amorphous nature of many tech start-ups. These companies become increasingly powerful with each passing year, and yet in many cases they have ill-defined hierarchies and structures. Clearly, their days as dynamic "disruptors" have ended. They are now multinational corporations and need to be treated as such. Senior executives of technology companies are the new corporate elite – and they must take responsibility for the actions of their platforms and its users.

In many ways this legislation is unprecedented in scope, but it is imperative that the UK does not attempt to enact change on its own. This is a global problem, and it needs global solutions. We know that many of the trolls who target people with epilepsy live outside the UK. This is an issue that transcends national boundaries. We sincerely hope this Bill will persuade the government to work with agencies in other countries on a global solution to this global problem. This is a clear opportunity for the UK to lead the way and other nations to follow. Law enforcement professionals must also be empowered to cooperate on a transnational basis and bring online trolls to justice regardless of physical location.

One excellent example of recent transnational collaboration is the work of G7 finance ministers in agreeing a global minimum corporation tax rate. Regardless of one's opinions of the policy, this clearly demonstrates that governments are able to come together to tackle issues of global significance, and to stand up to multinational corporations. A similar approach must be taken with online safety.

We are heartened that the Bill states that Ofcom will have the power to regulate any platform which is accessible in the UK, regardless of where it is headquartered. This must unequivocally be enforced to ensure that internet platforms and users based abroad cannot continue to disregard UK law.

Please see the next few pages for examples of the type of content sent to people with epilepsy online with the specific intent of causing seizures.

Examples of online attacks against people with epilepsy

Social media and online platforms are useful tools for people and organisations to connect. There are millions of positive online interactions each day. However, just like in offline life, certain groups wish to cause harm and distress for their own form of amusement. Epilepsy Society and other epilepsy-related social media accounts have been the target of co- ordinated attacks for many years. Our Twitter account has over 26,000 followers.

On 13th May 2020 Epilepsy Society’s Twitter account was subjected to an attack that lasted 48 hours where we and our followers were subjected to hundreds of 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. Although this was the largest such attack, they do continue to the present day.

Below are some static examples of the malicious posts: