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'My right to euthanasia'

The British MS-sufferer who went to court to try to ensure her husband wouldn't be prosecuted if he

“I was really upset,” said Debbie Purdy after judges in the High Court ruled against her. “Perhaps it was naïve of me, but I was absolutely convinced we were going to win.”

Purdy has Multiple Sclerosis (MS) and plans to go to Switzerland and have a doctor help her die when the pain gets to be unbearable.

She would like her husband to accompany her but is worried that he could face up to 14 years in jail under a law dating from 1961.

Ultimately, if she does not win her case she will go earlier than planned, when she still has the faculties to administer the drugs to herself and won't need to directly involved anyone else.

“We were only asking for clarity, not asking for anything grandiose.”

Now she's been granted leave to take her case to the Court of Appeal.

“It's been surprising how much interest there has been – journalists, neighbours, people on the train - who have come up to me and said, 'my aunt, my uncle, was in the same position'. Even on the train home from London, I met a lady with breast cancer. She said to me, 'I'm really glad you're brave enough to do this. I'm not.'”

“This has refocused my belief in humanity – we don't think only of ourselves. People are more than that – they have compassion and the ability to see others point of view.

“It's incredible, isn't it?”

Ultimately there needs to be a rethink at Parliamentary level but Purdy doubts politicians have the courage to confront this particular issue preferring to leave the battles to the courts.

“The law hasn't been looked at since 1961 – in that time medical, social and cultural advances have been huge,” she points out.

“I think it's cowardice on the part of politicians: they are scared they might lose votes.”

She doesn't think that politicians should influence how she chooses to die. “People should be trusted more to make decisions.”

Not all of her friends agree with the decision that she will eventually make to kill herself when the pain becomes unbearable. “A friend who is very religious and doesn't think it's the right decision said to me after the court case, 'I'm really disappointed for you, because it's your choice.'”

“Even my husband's not 100 per cent certain what he would do if he were in this position. It's a decision he would do everything to stop me making.”

He does however realise the decision isn't his. As Purdy says: “He's not the one who takes pain killers before he gets out of bed in the morning or is lying on the floor, calling to be helped to get up.”

Over 100 British people have travelled to Zurich to die and everybody except one was accompanied by friends or relatives explained Purdy. “Because of the law, it forced terrible decisions. Though no one's been prosecuted yet, one who accompanied someone to Switzerland was investigated for nine months. Somebody will get prosecuted unless we clarify.”

“Because my husband is black and he's foreign, if they're going to prosecute someone, it's going to be him, not some 70-year-old English woman. It's frightening to contemplate – I love him.”

Those who accompany those to die aren't the only ones who face possible persecution. Currently under British law it is illegal for doctors to offer counselling regarding assisted suicide. Purdy wonders, “How can we protect doctors? A doctor's first instinct is compassion.”

Purdy feels that having the ability to have an assisted suicide increases the quality of care. “Hospice care is great but it isn't right for everybody.”

In the US state of Oregon, where assisted suicide has been legal for 10 years, more than 300 people have used it to die. Purdy feels that the quality of care has improved there as “the number of patients dying from too many pain medications (which are often prescribed to those in chronic pain) has gone down.”

Purdy attended a discussion on the topic following the verdict of her case. “Some people suggested that this issue is statistically insignificant,” she said. “They [people who went to die in Switzerland] were vibrant, real people who didn't want their last months to be painful or degrading.

“Some think it's a theoretical, ethical discussion. But this is my life.”

Purdy disagrees with those who don't want to legalise mercy killings because they feel the law protects vulnerable people. Though she is in a wheelchair and has lost the muscular ability to open child proof tops, she doesn't feel that her disability has made her vulnerable. “I fall over on the floor a lot – it's annoying not undignified. That I'm referred to as a victim or vulnerable is undignified.”

“This sounds selfish but this is my life – there's not much I can do about the situation in Democratic Republic of Congo. I need to do what I can to make my life longer – and maybe contribute.”

Purdy says that changing the law would allow people like her who are in chronic pain to live worry-free knowing that they have a way out. “We need a safety net so we can walk on a high wire. If the pain becomes too much and if we are serious, not coerced, then we can ask for help to end our lives.”

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Tweeting terror: what social media reveals about how we respond to tragedy

From sharing graphic images to posting a selfie, what compels online behaviours that can often outwardly seem improper?

Why did they post that? Why did they share a traumatising image? Why did they tell a joke? Why are they making this about themselves? Did they… just post a selfie? Why are they spreading fake news?

These are questions social media users almost inevitably ask themselves in the immediate aftermath of a tragedy such as Wednesday’s Westminster attack. Yet we ask not because of genuine curiosity, but out of shock and judgement provoked by what we see as the wrong way to respond online. But these are still questions worth answering. What drives the behaviours we see time and again on social media in the wake of a disaster?

The fake image

“I really didn't think it was going to become a big deal,” says Dr Ranj Singh. “I shared it just because I thought it was very pertinent, I didn't expect it to be picked up by so many people.”

Singh was one of the first people to share a fake Tube sign on Twitter that was later read out in Parliament and on BBC Radio 4. The TfL sign – a board in stations which normally provides service information but can often feature an inspiring quote – read: “All terrorists are politely reminded that THIS IS LONDON and whatever you do to us we will drink tea and jolly well carry on thank you.”

Singh found it on the Facebook page of a man called John (who later explained to me why he created the fake image) and posted it on his own Twitter account, which has over 40,000 followers. After it went viral, many began pointing out that the sign was faked.

“At a time like this is it really helpful to point out that its fake?” asks Singh – who believes it is the message, not the medium, that matters most. “The sentiment is real and that's what's important.”

Singh tells me that he first shared the sign because he found it to be profound and was then pleased with the initial “sense of solidarity” that the first retweets brought. “I don't think you can fact-check sentiments,” he says, explaining why he didn’t delete the tweet.

Dr Grainne Kirwan, a cyberpsychology lecturer and author, explains that much of the behaviour we see on social media in the aftermath of an attack can be explained by this desire for solidarity. “It is part of a mechanism called social processing,” she says. “By discussing a sudden event of such negative impact it helps the individual to come to terms with it… When shocked, scared, horrified, or appalled by an event we search for evidence that others have similar reactions so that our response is validated.”

The selfies and the self-involved

Yet often, the most maligned social media behaviour in these situations seems less about solidarity and more about selfishness. Why did YouTuber Jack Jones post a since-deleted selfie with the words “The outmost [sic] respect to our public services”? Why did your friend, who works nowhere near Westminster, mark themselves as “Safe” using Facebook’s Safety Check feature? Why did New Statesman writer Laurie Penny say in a tweet that her “atheist prayers” were with the victims?

“It was the thought of a moment, and not a considered statement,” says Penny. The rushed nature of social media posts during times of crisis can often lead to misunderstandings. “My atheism is not a political statement, or something I'm particularly proud of, it just is.”

Penny received backlash on the site for her tweet, with one user gaining 836 likes on a tweet that read: “No need to shout 'I'm an atheist!' while trying to offer solidarity”. She explains that she posted her tweet due to the “nonsensical” belief that holding others in her heart makes a difference at tragic times, and was “shocked” when people became angry at her.

“I was shouted at for making it all about me, which is hard to avoid at the best of times on your own Twitter feed,” she says. “Over the years I've learned that 'making it about you' and 'attention seeking' are familiar accusations for any woman who has any sort of public profile – the problem seems to be not with what we do but with who we are.”

Penny raises a valid point that social media is inherently self-involved, and Dr Kirwan explains that in emotionally-charged situations it is easy to say things that are unclear, or can in hindsight seem callous or insincere.

“Our online society may make it feel like we need to show a response to events quickly to demonstrate solidarity or disdain for the individuals or parties directly involved in the incident, and so we put into writing and make publicly available something which we wrote in haste and without full knowledge of the circumstances.”

The joke

Arguably the most condemned behaviour in the aftermath of a tragedy is the sharing of an ill-timed joke. Julia Fraustino, a research affiliate at the National Consortium for the Study of Terrorism and Responses to Terrorism (START), reflects on this often seemingly inexplicable behaviour. “There’s research dating back to the US 9/11 terror attacks that shows lower rates of disaster-related depression and anxiety for people who evoke positive emotions before, during and after tragic events,” she says, stating that humour can be a coping mechanism.

“The offensiveness or appropriateness of humor seems, at least in part, to be tied to people’s perceived severity of the crisis,” she adds. “An analysis of tweets during a health pandemic showed that humorous posts rose and fell along with the seriousness of the situation, with more perceived seriousness resulting in fewer humour-based posts.”

The silence

If you can’t say anything nice, why say anything at all? Bambi's best friend Thumper's quote might be behind the silence we see from some social media users. Rather than simply being uncaring, there are factors which can predict whether someone will be active or passive on social media after a disaster, notes Fraustino.

“A couple of areas that factor into whether a person will post on social media during a disaster are issue-involvement and self-involvement,” she says. “When people perceive that the disaster is important and they believe they can or should do something about it, they may be more likely to share others’ posts or create their own content. Combine issue-involvement with self-involvement, which in this context refers to a desire for self-confirmation such as through gaining attention by being perceived as a story pioneer or thought leader, and the likelihood goes up that this person will create or curate disaster-related content on social media.”

“I just don’t like to make it about me,” one anonymous social media user tells me when asked why he doesn’t post anything himself – but instead shares or retweets posts – during disasters. “I feel like people just want likes and retweets and aren’t really being sincere, and I would hate to do that. Instead I just share stuff from important people, or stuff that needs to be said – like reminders not to share graphic images.”

The graphic image

The sharing of graphic and explicit images is often widely condemned, as many see this as both pointless and potentially psychologically damaging. After the attack, BBC Newsbeat collated tens of tweets by people angry that passersby took pictures instead of helping, with multiple users branding it “absolutely disgusting”.

Dr Kirwan explains that those near the scene may feel a “social responsibility” to share their knowledge, particularly in situations where there is a fear of media bias. It is also important to remember that shock and panic can make us behave differently than we normally would.

Yet the reason this behaviour often jars is because we all know what motivates most of us to post on social media: attention. It is well-documented that Likes and Shares give us a psychological boost, so it is hard to feel that this disappears in tragic circumstances. If we imagine someone is somehow “profiting” from posting traumatic images, this can inspire disgust. Fraustino even notes that posts with an image are significantly more likely to be clicked on, liked, or shared.

Yet, as Dr Kiwarn explains, Likes don’t simply make us happy on such occasions, they actually make us feel less alone. “In situations where people are sharing terrible information we may still appreciate likes, retweets, [and] shares as it helps to reinforce and validate our beliefs and position on the situation,” she says. “It tells us that others feel the same way, and so it is okay for us to feel this way.”

Fraustino also argues that these posts can be valuable, as they “can break through the noise and clutter and grab attention” and thereby bring awareness to a disaster issue. “As positive effects, emotion-evoking images can potentially increase empathy and motivation to contribute to relief efforts.”

The judgement

The common thread isn’t simply the accusation that such social media behaviours are “insensitive”, it is that there is an abundance of people ready to point the finger and criticise others, even – and especially – at a time when they should focus on their own grief. VICE writer Joel Golby sarcastically summed it up best in a single tweet: “please look out for my essay, 'Why Everyone's Reaction to the News is Imperfect (But My Own)', filed just now up this afternoon”.

“When already emotional other users see something which they don't perceive as quite right, they may use that opportunity to vent anger or frustration,” says Dr Kirwan, explaining that we are especially quick to judge the posts of people we don’t personally know. “We can be very quick to form opinions of others using very little information, and if our only information about a person is a post which we feel is inappropriate we will tend to form a stereotyped opinion of this individual as holding negative personality traits.

“This stereotype makes it easier to target them with hateful speech. When strong emotions are present, we frequently neglect to consider if we may have misinterpreted the content, or if the person's apparently negative tone was intentional or not.”

Fraustino agrees that people are attempting to reduce their own uncertainty or anxiety when assigning blame. “In a terror attack setting where emotions are high, uncertainty is high, and anxiety is high, blaming or scapegoating can relieve some of those negative emotions for some people.”

Amelia Tait is a technology and digital culture writer at the New Statesman.