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Together alone: Activism and social media

As Disability Now prepares for our digital relaunch in early October, Agnes Fletcher takes stock of how disabled activists have used blogging and social media as campaigning tools

When Atos refused Jayne Linney’s requests to have her Work Capability Assessment recorded, she set up an online petition gaining more than a thousand signatories. It may or may not have been directly related, but Atos eventually allowed the recording.

“I started the petition out of sheer despair”, says Linney. “It was one of those moments when you’re at a complete loss. I was housebound and exhausted. If I’d been active and healthy, it wouldn’t have been my only option. But I wasn’t. I knew I had a right to have the interview recorded. I set up my online petition to draw attention to my situation and used my blog, Facebook and Twitter.”

After a slow start the petition gained 1,300 signatures. Eventually, Linney was awarded Employment Support Allowance.

“The next battle is DLA”, she says. “If I lose DLA or ESA I won’t be able to afford the internet at home. I’d be incredibly isolated. I sometimes feel judged – you can’t be poor if you’ve got the internet. But for me it’s a lifeline. My life wouldn’t be worth living without it.”

Social media – Facebook, Twitter, blogs, e-petitions, messageboards and the rest – are increasingly used by individuals and social movements around the world to influence change. From the Arab Spring to Occupy Wall Street, information and communication technologies are not just mobilising activism, they are generating new forms of protest.

The Mexican Zapatista movement’s adoption of the internet in the early 1990s was the first sign of how new media and grassroots activism could combine to challenge the cultural and political status quo.

And activists already using the internet to organise and communicate among themselves drew on the Zapatista’s imaginative use of the internet to begin broadcasting their messages to an emerging global audience.

By the late 1990s and the anti-globalisation protests against the World Trade Organisation in Seattle, activists were using the internet to target big companies and influence public opinion, as well as covertly to organise hundreds of thousands of protesters throughout the world.

Since then, broad-based, populist political campaigns have become the norm, testifying to the internet’s democratic potential. Social media connect people and support them to take action on and offline.

Talking to Kaliya Franklin, who blogs as “Benefit Scrounging Scum”, provides a potted history of recent developments in technology and activism. Franklin started in 2007, when the blogosphere was just taking off and, she says, very different from today.

Franklin acquired her impairment in 2004 and didn’t know many other young disabled adults. “But I knew I wasn’t the only person facing issues with the welfare system and the NHS. At first blogging was like free therapy. I was anonymous. I had a small but loyal readership. I wrote about my life.”

Bloggers were a smaller but stronger community back then. “Although people sometimes disagreed profoundly, it was a politer, more respectful place. Other bloggers who disagreed with us disabled bloggers would do so with respect. But crucially, they would go off and look at the evidence. This often led to people changing their position. It’s that mutual respect and insistence upon evidence that I miss most about blogging.”

When Franklin started blogging, she had no experience of activism. “My first campaign happened by accident. The specialist service in Leeds for people with my impairment was closing. I wrote about this on my blog and it was picked up by the local media in Leeds and described as a campaign. I started to understand how powerful blogging could be – and that others understood what I was writing to be ‘campaigning’.”Â

Her blog is now so influential that it won The 2012 Orwell Prize for political writing.

Just after the 2010 election, the first broad-based disability campaigning blog was set up – “Where’s The Benefit?”, the brainchild of Philippa Willits and Lisa Egan, with Franklin and others contributing. After the Coalition’s first comprehensive spending review, Franklin sent a video letter to the Prime Minister expressing her horror at the planned cuts to disability benefits. It went viral, ending up on the front of The Guardian website – and everything changed.

For Franklin, anonymous blogging was no longer an option. “That was quite scary and intimidating. The freedom anonymity gave me to talk honestly about life as a disabled person had given me the confidence to write. Being ‘known’ was quite something to adjust to.”Â

Shortly afterwards, “The Broken of Britain” was born: a non-partisan UK-based disability campaign.

“We all came together to fight the cuts”, says Franklin. “No one had any experience of campaigning or activism. We were too young or too newly disabled to have been part of radical protests of the 1990s. Most of us had conditions that made us ill as well as disabled. So we were determined to use these new social media tools to enable those who couldn’t do direct action to protest and have their voices heard.”

Broken of Britain pumped out personal stories: “We knew if we could change public opinion to support sick and disabled people we would be able to influence politics that way”, says Franklin.

By 2011 the mainstream media were paying attention. The group supported other disabled people to participate, helped them to write press releases and lobby politicians.

Then came the Spartacus report, based on primary research by Dr Sarah Campbell, coordinated by Sue Marsh and written and supported by Franklin and others.

“The one big mistake we made in Spartacus was not planning for success”, says Franklin. “We thought we’d put out a report, persuade some politicians to read it and go to bed for a month to recover.”

It was described as one of the most successful social media campaigns ever. “The downsides were that people looked to us to lead, often thinking that we were professionals; that we had funding or resources and could provide the support they desperately needed. We all did our best but couldn’t live up to people’s expectations.”Â

Franklin’s story is typical of many online disabled activists. She outlines the great benefits of social media in terms of overcoming isolation and exerting personal influence through collective action – but also the downsides. “It’s an immense privilege to be seen as a disabled campaigner to whom others look to express opinions but it’s also an awesome responsibility. Ultimately, all we can do is our best under very difficult circumstances as much as our disabilities or illnesses allow.”

Franklin is clear on the benefits of online activism for those with impairments that involve fatigue and pain. But also that she had never experienced the “old-style” activism of real time demos before she started her campaigns.

Martyn Sibley also contrasts what he describes as the “traditional activism” of the past with the “new activism”, almost wholly conducted online. He says: “In the past, disabled people took to the streets and demonstrated for their rights. Now, with social media, a greater number of people can be mobilised, without physical barriers, to demand social change.

“Through my blog, webinars, eCourses, eConferences, Twitter etc, thousands of disabled people have shared knowledge and experiences and supported one another. Political change and individual progress can be harnessed through online media to great effect.”

Sibley champions “creative activism” through art and techniques such as using Instagram to photograph barriers, then share them via social media: “No negativity, no blame, no expectations, just fun!”

When asked about the limits of such forms of “protest”, Sibley clarifies: “I’d say it’s a tool and complementary but will and should never replace offline.”

Professor Mike Oliver reflects (Disability Now, September 2012) on the contrast between the campaigning of today and of 20 years ago. He is concerned about the renewed transcendence of the personal in political campaigning and that much “cultural activism” is divorced from campaigning on political and economic issues.

Social media potentially feed this divide. The political is often supremely personal in the digital world. Oliver says: “Buying into government’s vision of us as either vulnerable or undeserving is a recipe for political failure.”

Oliver believes “third generation activists” need to think carefully about how to use social media to create real change – rather than just eloquent and articulate victims. “In the 1980s, Disability Pride gave people the courage to confront the police, be arrested, spend time in the cells. We were meeting each other in the real world. Will the internet impede or enable that in future? And remember social media are tools for propaganda by business and government too.”

However, he does concede the internet’s use as a tool for mobilising offline action. And as recent demonstrations by Disabled People Against the Cuts and UK Uncut outside Atos and Department for Work and Pensions offices show, on and offline activism can link the efforts of those on the streets with those who prefer or have to stay at home but can now make their voices heard.

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