Regular DH contributor, Sarah Ismail, shares this fantastic article on Kaliya Franklin. A tireless campaigner for disability rights who has been a pioneer in online campaigning via her blog, The Broken of Britain.
Kaliya Franklin’s life hasn’t always been what it is today. Although her disability, Ehlers Danlos Syndrome, affected her in childhood, Kaliya says it ‘did not cause significant disability then.’ She was labelled as being an attention seeking child, and then a ‘malingering’ adult. Kaliya started to become disabled by EDS in her late teens/early 20s, although she was not actually diagnosed with the condition until the age of 28.
Asked what EDS means, Kaliya says the condition “affects the way the collagen in the body is made; people with EDS have collagen which is weak and too stretchy to do its job properly. If you imagine the human body is a bit like a house, the collagen is the glue, or cement which holds it together. In people with EDS that ‘cement’ is like chewing gum that someone’s chewed for a week then left in the sun to melt.”
Practically, that means that Kaliya gets tired more quickly than most people. She needs much more energy than most to do the things most people hardly have to think about – breathe and digest food.
Somehow, Kaliya manages to put aside all these personal challenges to be a disability rights campaigner and disability blogger. She explains: “I started blogging in 2007 after years struggling to obtain a diagnosis and the correct medical professionals to treat my EDS. Becoming disabled and discovering the complexities and loop holes of the NHS, welfare state and social care was a depressing and isolating process. I knew I couldn’t be alone in my experiences but I had no idea how to find other younger adults dealing with these issues.”
With the sense of humour that Kaliya’s many online followers have come to know and love, she adds that she started her personal blog, Benefit Scrounging Scum, because she wanted to test a theory that “wearing 6 inch heels would relocate my hips to make walking possible.” Unfortunately, her unique brand of hip relocation has not yet been successful but, she says, “I remain optimistic.” One thing that Kaliya has discovered is that it is possible to pull a man whilst involuntarily drooling!
About the name of her blog she says it is “partly ironic, intended to reclaim the language but also partly in the hope that if anyone ever googled for ‘benefit scrounging scum’ it might challenge their perceptions about disability and welfare issues.”
In October 2010 Kaliya started up an online campaigning organisation called the Broken Of Britain. She says:
“I was so shocked by the amount and extent of the cuts affecting sick and disabled people announced by the Coalition in the Comprehensive Spending Review that I made a video letter to the Prime Minister which went viral. There was a small group of disabled individuals trying to alert the rest of our community to what New Labour had done to disability benefits and services prior to the election and by the time of the CSR that was rapidly growing. We were shocked and frightened and very aware that unlike the students, mass protest on the streets isn’t a viable option for most of us, so we needed to find a way that people with very serious access barriers to the world could have their voices heard. The internet was the obvious place to base our campaign and the emerging social media platforms made it possible for us to find each other and combine our voices and talents. The Broken of Britain evolved on social media, primarily Twitter in those first shocked days after the Comprehensive Spending Review.”
About the organisation’s name, Kaliya says:
“One of the slogans we heard most frequently from David Cameron whilst campaigning was that Britain was broken. The Broken of Britain was catchy and a way of directly challenging this concept of Broken Britain in a way the wider public were already familiar with.”
Kaliya’s campaigning career has so far had two highlights, and they are both closely connected to the 2011 Labour Party Conference.
“In terms of publicity, definitely challenging Ed Miliband at the Labour Conference in Liverpool. But the achievement I’m most proud of is the Easy Read version of this encounter the charity United Response produced for people with learning disabilities and as a result of that UR’s ambition to set up a non partisan easy read news service.”
Unfortunately, there has also been a low point. Kaliya says this was:
“The day I received an email from someone who’d been through multiple Work Capability Assessments and was now so traumatised they intended to make another suicide attempt in public. Having failed previously this time they intended to take their own life in public in the desperate hope that they could leave behind some good that way by alerting the wider public to the harm being done to sick and disabled people in the name of eliminating scroungers. Knowing that British citizens are being made to feel unworthy of life by their government haunts me every day.”
Where does Kaliya think The Broken of Britain will be in 2015? Her response to this question is a sad one. “At the moment our core team are even more unwell than usual. My hope is that in 2015 we will all still be here.”
Like many ‘happily disabled’ people, Kaliya doesn’t know what she would do if she was miraculously cured. She says “a cure is something I just never think about!”
She does, however, think about what she would do if she won the National Lottery. With the jackpot, she says, “I’d have a bungalow for myself, by the sea with a garden and all the expensive, blingy access needs built in, a variety of wheelchairs and more physiotherapy, practical support etc. With the rest I’d start a charity doing research into EDS and focusing on providing improving diagnosis and giving practical support to people with the condition. I suppose that means I should buy a lottery ticket!”
By Sarah Ismail
The featured image used at the top of the article is courtesy of Christine Burns. Check website here.
I respect very many people, I admire very few. Kaliya is one of the few. I don’t know her, personally, I’ve only read what she writes and read about what she does but each piece I read the more I realise that she is an example to the rest of humanity and deserves a medal [though she’d probably refuse it.]
Agreed. Thanks for your comments guys. Srin and I wanted to do this article for a while after Kaliyas amazing impact of online campaigning. We look forward to the activities in 2012
This is Awesome!!
This world is crying out for people like you. People who can promote our cause at the highest levels of government. Ok, I make a difference as a local disability activist, and have fingers in so many pies, so I congratulate you for raising our profile. Many thanks and good luck.
Kaliya speaks of a world that is simply too uncomfortable for most politicians and senior national and local government officials to understand. In truth they will not try, far easier to fall back on some Big Society safety net, a net so full of nonsense it beggars belief. I know that New Labour was far from perfect but I have personal experience of the massive progress made in areas like employment for disabled people, with innovative and practical thinking making a real difference, all trashed by the despicable ConDems.
The CSR had one central objective, how to recover the financial sectors greed ridden losses with as little impact as possible on the wealthy in this country. The rest of us, so called able bodied and disabled alike, will pay a price for several decades. Kaiiya’s voice however will be heard thanks to a brave new world of communication where we will be surprised by how far individual voices can reach. DH will I suspect be part of that new “reach” and the more people read and understand what it actually means to live with disability, particularly the less visible impact, the more they will appreciate that this is not about how quickly we can get bankers back to obscene and yes undeserved bonus payments. It is actually about people’s lives and respect and values, a hard sell I know but maybe all is not lost when Kaliya and others of similar power can steer opinion via a media approach that is crisp and new and relevant.
Cheers, Mark