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.”
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.”