Campaigners demonstrate outside the Royal Courts of Justice against the Government's reform to limit state benefit on February 21, 2014 in London, England. Photo: Getty Images
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Social media means the voices of the disabled can no longer be ignored by those in power

The coalition government’s harsh welfare cuts have been met by a surge in activism among disabled people, who have found that social media has given them new clout to fight for their rights.

It was perhaps the first week of 2012 when things seemed to change. Twitter found itself filled with the hashtag #spartacusreport. A report outlining the government's alleged evasions over its changes to disability living allowance (DLA) was trending number one globally - a tiny group of disabled activists co-ordinating a storm from their living rooms. Strategically timed with the House of Lords vote on the Welfare Reform Bill, two days later the government was enduring a triple-defeat: a "no" to cuts to disabled children, cancer patients, and the long-term sick. Then it happened again. This time the War on Welfare (Wow) petition, a group of campaigners calling for a new deal for disabled people, and their key demand: an impact assessment of the multiple cuts hitting the disabled and long-term sick that the government refused to conduct. One year and 104,795 online signatures later, they had won a debate on the issue in the House of Commons. Social media - blogging at 3am, tweeting from bed - was changing the face of campaigning. It was changing politics. 

“For sick and disabled people campaigning, social media has been revolutionary,” says Sue Marsh, one of the main architects behind the Spartacus report who tweets as @suey2y. “It’s been a magic bullet. It’s given us political influence, media respect and international impact. I can't think of any [other] way sick and disabled people could have done what we and all of the campaign groups together have achieved.”

The timing seemed primed for a new form of disability activism. The sudden onslaught of government cuts disproportionately affecting disabled people and the long-term sick met with the growth of social media. This was – and is – an era of bedroom tax arrears and Personal Independence Payment delays, where government policies mean the UK risks being in breach of international obligations to the rights and equality of disabled people. Personal blogs, tweets and Facebook groups have become an embodiment of the unease – and anger – that has emerged. They have also filled in where traditional media is seen as failing, with what one campaigner succinctly described to me as “an effective mainstream media blackout” of issues affecting disabled people.

In the disabled and long term-sick, social media has found a section of society simultaneously targeted and excluded from mainstream politics. In social media, disabled people have found themselves a voice.

“Disabled people have taken social media and made it into their own medium, where they can have a voice on equal terms with their non-disabled counterparts, something not often afforded by society as a whole,” says Ellen Clifford, 37, of the campaign group Disabled People Against Cuts (DPAC). 

The freedom and ease of a computer or a mobile has reached people disabled not only by their health or lack of mobility, but also by low income and geographic location, and by a society built for the non-disabled. A protest in central London is not easy when the tube network doesn’t fit wheelchairs or a health condition makes getting out of bed - let alone being out for hours - exhausting. 

“In a year I’ve travelled all over the UK. Glasgow for the anti bedroom tax rally, the Lib Dem Conference, the Westminster bedroom tax lobby in the House and other London demos… This hasn’t been easy. It’s so hard when you suffer pain twenty-four seven,” says Michelle Kent, 49, who is partially sighted and has a spinal and joint condition. After having her housing benefit cut when ‘under-occupying’ charges came in last April, she became an early administrator on the anti-bedroom tax Facebook group that now has over 13,000 members. “Whenever I do anything [physical campaigning], it always takes days to recover.”

“Many of us wouldn't be able to campaign at all without social media,” says David Gillon, 50, who tweets as @WTBDavidG, and blogs at the collective Where’s the Benefit. “I barely get out of the house, and I've given up going into London at all, it’s just too exhausting with my pain-based disability. No matter how many marches on parliament are called, I'm physically excluded by the realities of disability, and that's true for so many disabled people. Social media lets me campaign while lying flat on my back if I can't sit up, never mind march on parliament.”

Marsh, now 41, was diagnosed with Crohn’s disease in her twenties and had to give up a career in sales in 2000 due to the extensive pain and exhaustion that comes with her condition. In her blog Diary of a Benefit Scrounger, and with the subsequent Spartacus campaign, she found a voice - and with it, thousands of other people willing to add theirs, each with disabilities and chronic illnesses affected by the issues she was writing about. As she described it to me, it was "people rising up, people who felt that they were in chains".

“You know yourself our articles are the most loyally tweeted and shared,” she tells me. “I don't think the impact the first Spartacus report had in 2012 can be underestimated… We had some reach analysis done for Beyond the Barriers, our latest report, by Demos and it had a reach of about half a million from five thousand tweets on the first day. The first report had probably a hundred times that… We’ve gained real power from it, largely without the help of traditional media or political support.”

When Sue Mccafferty, 52, wrote the Closing the Door on the Law briefing in 2012 to highlight the discriminatory impact the bedroom tax would have on disabled people, she was able to use the growing reputation of online activists to have it reach Westminster.

“If I had just sent something in under my own name no-one would have looked at it, much less read it,” Mccafferty, who has chronic liver disease, tells me. “But because by this point Spartacus had such an amazing reputation for producing good quality research and driving debate around welfare reform I was able to get the argument right to the heart of power. The briefing was referred to frequently in the debate and was the starting off point for the judicial review last year. All without hardly ever leaving the house.”

“There was a great moment when I asked a friend to include an obscure fact about universal credit in his blog and it led to a Twitter conversation that finally ended with Iain Duncan Smith being quizzed on the Andrew Marr show about this piece of information,” she adds. “So I'd caused the government some embarrassment just by releasing an obscure fact into the blogosphere.”

“All the planning, from the text of the petition to the name Wow, was crowdsourced on Twitter,” says Laura Stringhetti, a member of the steering group for the Wow campaign (which began with the Wow petition) when I ask her about the group’s online work.

It seems as if it shouldn’t be underestimated what it takes to get 100,000 people to sign a petition, particularly considering what Stringhetti dubs the internet’s "petition fatigue". The Wow petition was actually the group’s second attempt; their previous bid, Pat’s Petition, having failed to reach the necessary target to force MPs to debate the impact of the cuts on disabled people. It was in gaining celebrity backing – the comedian Francesca Martinez  – as a front to the campaign that acted as a catalyst throughout social media. Martinez tweeting her support led the likes of Russell Brand, Stephen Fry, and Eddie Izzard to do the same. Over a year, thousands of ordinary people – disabled and non-disabled – promoted the cause online.

“Although born as an online campaign, we also took part and organised meetings with other campaigners, printed flyers for events and demos, had stalls, spoke at political events,” Stringhetti, 51, adds. “We believe that to be successful these days, we have to be able to make the transition from online to traditional campaigning and vice versa.”

Indeed, one of the striking things about social media disability activism is the way it’s not only empowered individuals otherwise excluded from campaigning but also positioned itself alongside more traditional methods, ultimately improving them. “Disabled People Against Cuts now run parallel social media protests every time they have an action in the 'real world' for disabled people unable to get to or take part in high visibility street protests,” says Clifford.

It’s creating a new type of campaigner who is both protester and reporter: allowing those present to publicise their actions on-site and those unable to be there physically to contribute by ‘spreading the message’ online.

DPAC, founded in 2010 as opposition to the government’s disability cuts, utilised the method during the recent attempted occupation of Westminster Abbey protesting the closure of the Independent Living Fund. Clifford describes it to me as being “highly effective” – news of the protest spreading through Twitter within the hour and journalists, otherwise unaware, sharing the story. “It’s been clear that disabled people, along with other grassroots groups need to make our own media, and we’ll continue to do that,” she adds.

Open to abuse
For all its strengths, social media – like any medium – has its flaws. The misogynistic abuse that’s been leveled at feminist campaigners like Caroline Criado-Perez online has been shown to have its own disability variety; anything from accusations of “if you can blog, why can’t you get a job?” to monitoring one disabled person’s supposed output and using it against another. “Fuck off with your designer diseases. Only thing you've got is an overactive claim form,” is a token example.

In the first couple of years of the Coalition, Steven Sumpter, who was diagnosed with ME eight years ago, used multiple forms of social media to collate and spread information and to raise awareness of the welfare reforms. It was incredibly successful – he gained 530,000 page views on his blog and 1.7 million views on Youtube – but with it came abuse.

“The reach of my retweets attracted many people telling me that my illness was fake, that I am a scrounger, that welfare reform was necessary to crack down on people like me,” Sumpter, 35, says. “I had one person I had never heard of fabricate a story that I had targeted her for abuse and she sent me emails demanding that I stop, publishing them through her tweets. She made up a police crime reference number to try and scare me into closing my Twitter account. I was quite panicked over that.”

“For me, the worst one was that I was 'faking' and 'exaggerating' my disability, [that] I was 'a keyboard warrior'," says Helen Sims, who was born with cerebral palsy and, after founding an internet radio station covering disability and austerity topics, received harassment on Facebook.

"I felt scared to turn on the computer in case there was another message waiting for me, and I found I didn't know who to trust,” Sims, 32, explains. “Was the person I was talking to online really on my side, or were they one of the bullies, just pretending to be my friend? Would they turn on me, and use what I said against me later? Were they going to spread more lies?"

The medium’s problems can also be mundane; one of lack of action or inner squabbling. Kent tells me she’s since left the anti-bedroom tax group she helped start due to conflict between members.

“All I see now is a very large group of over 13,000 people doing absolutely nothing. I hear the group has become a dumping ground for crap memes and is not very bedroom tax-related at all,” she says. “I’m still an admin on 'Bedroom Tax and Disabled - Tell Us Your Story', a great group and help lots on a personal level with individual cases.”  

Armchair activism
Used well, online campaigning is leading to tangible change. When Alan Benson, who uses a wheelchair due to Muscular Dystrophy, was left by a guard on a train platform with no manned ramp, he tweeted his experience using the hashtag #nogobritain – a Channel Four news initiative started during the Paralympics to highlight the lack of accessible transport throughout the country. As a result, all the ramps at the stations on the Kingston loop were resited to avoid the problem happening again. Benson, 45, now writes about his daily journey on his blog, Never a dull journey, and tweets the relevant company the link.

It’s a reflection of a new form of communication – between individuals, campaign groups, politicians, or even private companies – that houses protest, publicity, community and debate. Or as a Gillon describes it to me, on a personal note – a "lifeline".

Among the high profile impact of the campaigns like Spartacus and No Go Britain sits the daily myth-busting of tweets to strangers, blogging with new friends, or exasperating conversations with commenters ‘below the line’ of articles on disability benefit cuts. What one long-term Comment Is Free commenter, ‘JesstheCrip’, puts to me as "changing minds one at a time … informing people who were previously ignorant", or "a bit like having a good old ding-dong about politics down the pub, but there's no risk of a fistfight, or worse, breaking out".

Stringhetti describes social media to me as showcasing the “abilities” of disabled people – people who have been shut out of the workplace by society’s failure to adapt and utilise them.

“A group of ‘armchair activists’ secured the first main chamber debate in the Commons ever directly obtained by disabled people,” she says. "These disabled people demonstrated that they can 'add value'".

There is an undisputable snobbery around ‘armchair activism’ – a repeated joke circling (without irony) Twitter: the real campaigners are on the streets, the pretenders are on their laptops. It shows not only ignorance of the reality of disability or poor health but an ignorance of just what online campaigning is accomplishing.

“At the moment, I think it's easy to feel we haven't achieved much, but actually I think this has fundamentally challenged the way politics is done,” Marsh says. “I think people will look back and say "That was when we realised politics had failed most people and started to do it differently. People took matters into their own hands, and in the end, politics just had to adapt."”

Disabled people’s exclusion from society is such that, too often, they’re even excluded from the traditional means to protest what is being done to them. Tweeting, Facebook, below-the-line comments, or blogging, has given many a new way.

“It's a brave new world opening up to anyone with a passion and a keyboard,” Marsh says. “Individuals are changing things every day.”

This piece forms part of our Social Media Week. Click here to read the introduction, and here to see the other pieces in the series.

Frances Ryan is a journalist and political researcher. She writes regularly for the Guardian, New Statesman, and others on disability, feminism, and most areas of equality you throw at her. She has a doctorate in inequality in education. Her website is here.

Flickr: M.o.B 68 / New Statesman
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“I begged him to come home”: Breaking the taboo around texting the dead

Many people text dead loved ones to cope with their grief – but trouble arises when they get an unexpected reply. 

A month after Haley Silvestri’s dad died from a heart attack, she texted him begging him to come home. In the middle of the night Silvestri’s 14-year-old sister had found their father, with his lips and mouth blue, lying on the kitchen floor. “There was nothing there anymore, just a dead body,” Silvestri says. “My father had his first heart attack months before and seemed to be doing OK. Then, this happened.”

In the very first episode of CSI Miami’s seventh season, the protagonist – Horatio Caine – fakes his death. For the first 15 minutes of the episode, the viewer believes the character is truly dead, as the camera lingers on Horatio’s body face down on the tarmac.

Silvestri and her father used to enjoy watching the show together. After he had passed and she realised she would never see her “best friend” again, she picked up her phone. “I texted my dad begging him to come home,” she says. “I begged my dad to please be ‘pulling a Horatio’.”

"My heart was broken and I was bawling as I texted her over and over" 

In texting her father after he had died, Silvestri is by no means unusual. No official figures exist for the number of people who use technology to message their deceased loved ones, but Sara Lindsay, a professional counsellor, clinical supervisor, and trainer, says it is “more common than we think”.

“I see it as a modern and contemporary part of the grieving process,” she says. “I think in a way it's very similar to visiting a graveside, in that the bereaved are reaching out, particularly in the early days, because it takes a long time for people to process the reality that this person has now gone.”

Karlie Jensen, 18, texted her friend immediately after she found out she had died in a car accident. “I texted her as soon as I woke up to the news from my mom that she had passed. My heart was broken and I was bawling as I texted her over and over waiting for a text saying it wasn't her, that my mom didn't know all the facts, and maybe she was just hurt.” Jensen also called her friend and begged her to respond. “I did it because I couldn't let go and couldn't accept she was gone from my life forever,” she says. Karlie continued to text her friend while also calling her voicemail in order to hear the sound of her speaking again. 

Karlie (right) and her friend

After her first text to her deceased father, Silversti also began texting him once a week. She fell into depression, and on her worst days messaged the number. “I think it helped initially because it felt like I was personally writing a note to him, that I knew he only was gonna see,” she says. “I did it because it was my attempt at pretending he was still here and could text me back.”

Lindsay, who has over a decade’s experience of bereavement counselling, emphasises that this behaviour is in no way unhealthy. “I think on the whole it's a very healthy part of grieving, particularly in the first year where the bereaved faces agonising days without their loved ones,” she says. “There is just so much loss and change in their life that’s out of their control, I see this aspect of texting as a small way of being able to reach out and alleviate that pain. That person is suddenly now not there but how they feel about that person hasn't changed.”

"I was going through my phone and I saw his number – I wanted to delete it, but I hesitated I thought maybe I could send a text"

Despite being normal, however, using technology to talk to the dead is a behaviour we rarely – if ever – hear anything about. If the words “texting the dead” make it into the media, they are usually followed by a far more sensationalist “and then they text back!!!!”. Yet although messaging the deceased is popularly seen as the stuff of horror movies and trashy headlines, in reality it is simply a new, modern way to grieve.

Via Mirror.co.uk

“The first time I texted him I was on my bus on the way to school,” says now-20-year-old Dylan Campbell about his cousin Josh, who passed away from leukaemia. “I didn't have many friends so I had no one to talk to. I was going through my phone and I saw his number – I wanted to delete it, but I hesitated I thought maybe I could send a text and someone would reply or I would get something out of it.”

Campbell continued to send his cousin texts for a few weeks, “kind of like a diary”. He says he did so because he regretted not seeing Josh more up until his death, and “had a lot of things to say” that he’d never had the chance to. Linsday says texting in this way is a very healthy way of completing unfinished business. “There might have been something they've never said to their loved one that they want to be able to say and texting is a very normal place to do that.”

"Begging for a dead person to reply to you hurts since you won't ever get what you want in return"

Nonetheless, Lindsay notes that texting the dead can become unhealthy if grief becomes “stuck”, and the texting replaces normal communication or becomes a long term compulsion. Unlike Silvestri and Campbell, Jensen continued to text her friend in the hopes she would text back. She admits now that she was in denial about her death. “Begging for a dead person to reply to you hurts since you won't ever get what you want in return” she says. “I don't know if it helped trying to contact her or hurt worse because I knew I'd never get a reply. I wanted a reply.”

Quite frequently, however, this reply does come. After a few months – but sometimes in as little as 30 days – phone companies will reallocate a deceased person’s phone number. If someone is texting this number to “talk” to their dead loved one, this can be difficult for everyone involved.

“This story doesn't have a happy ending,” says Campbell. “After a few months someone from that number called me and yelled at me to stop bothering them – it was really heart breaking.” When Silvestri texted her father to wish him a happy birthday (“Saying I hoped he was having a great party up in heaven”) someone replied telling her to never text the number again. “I was pissed off,” she says. “Just block my number if it was that serious. This was a form of therapy I needed and it got taken away because someone couldn’t understand my hurt.”

Indeed, behind the sensationalist tabloid headlines of "texting back" is a more mundane - and cruel - reality of pranksters pretending to be the dead relatives come back to life.

"Visiting a grave is a clear recognition that the person visited does not exist in the normal day-to-day state of life, whereas texting allows for a suspension of that reality"

Silvestri, Jensen, and Campbell have never spoken to anyone else about the fact they texted their dead loved ones. Lindsay says that a fear of seeming “mad” combined with cultural phenomena – like the British stiff upper lip – might make people reluctant to speak about it. There is also a stigma around the way much of our modern technology is used in daily life, let alone in death.

This stigma often arises because of the newness of technology, but Christopher Moreman, a philosophy professor and expert on death and dying, emphasises that texting the dead is simply a modern iteration of many historical grieving practices – such as writing letters to the dead or talking to them at their graves. “I don't think the process of grieving is much changed, even if new modes of grieving come about due to new technologies,” he says. In fact, if anything, the differences between old and new ways of grieving can be positive.

“One important difference is in the sense of proximity,” explains Moreman. “I can text a loved one from anywhere in the world, but I can only visit their grave in one specific location. In another way, texting has the same structure whether I am texting someone who is alive or dead, so a sense of proximity also exists in the experience itself.

“Visiting a grave is a clear recognition that the person visited does not exist in the normal day-to-day state of life, whereas texting allows for a suspension of that reality. Some people may complain that new technologies allow us to ignore the reality of death, but there isn't any evidence that one way of grieving is more or less healthy than another.”

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

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