Kaliya Franklin: Campaigning online and flexible working (Technology and disabled people series)
She is a graduate in law, and before her health worsened in her early twenties she volunteered as an army cadet instructor, enjoyed swimming and worked in a US summer camp. The condition she has, Ehlers-Danlos syndrome (EDS), has prevented Kaliya from climbing a career ladder and often leaves her in pain with exhaustion; she takes morphine to stave off the effects but this slows her right down.
Since 2007, Kaliya Franklin has blogged as where her main aim was to bring awareness of her condition. She was surprised when she was described as a campaigner by a Leeds column on The Guardian website which quoted a blog entry she'd written about an EDS specialist service losing its funding.
By 2011 she and fellow disabled campaigner Sue Marsh were raising their concerns about benefit reform plans with others via social networks and in January this year they published a report called . It became known as The Sparticus Report and was based on information and ideas they collected online from many contributors. They then used similar crowd-sourcing to raise funds to have it printed and delivered to MPs and peers.
Technology has played a big part in Kaliya's campaigning. Below we talk to her about how she uses it and how she'd like to see the available technologies used more intelligently in future.
What technology do you use regularly?
I use a laptop and a smart phone. The smart phone is a fairly recent addition, I didn't use it when I started all this.
The laptop was bought by my best friend a couple of years ago as a birthday and Christmas present. It was meant to be something to make a massive difference in my life, and it did. Interestingly, it was a present from a friend which first got me online back in 1998; I was given a modem and a year's subscription to AOL.
What technology do you wish had never been invented?
As much as I'm a fan of social media, I mourn the introduction of 24-hour rolling news in all its forms. It's both the best thing and the worst thing at the same time.
I think it's great to scrutinise politicians and political processes but it's made us a lot more fearful as a society. We all now believe there's been a rise in child abuse and paedophilia when there hasn't, for instance. It's a false belief which has grown thanks to over-reporting and sharing on Twitter.
Social media can do good though, like the recent marshalling of volunteers to find April Jones and cleaning up after last summer's riots. But now, Downing Street is constantly beset with crisis stories spawned by media. Ten years ago these were things we didn't know and wouldn't have wanted to know.
If the web was taken away from me today I would ...
... be terribly isolated, like many disabled people would be.
Although it shouldn't be the case, I'd say the majority of disable people are isolated from mainstream society. Whether they're too unwell to access it, have physical barriers or experience prejudice, disabled people are probably the group which social media has liberated the most - it has transformed what being housebound means. There's now less isolation and disabled people are talking to each other and have become a connected group like never before. It's a different way of accessing the world of making friends, accessing information and sources of support, it's not a replacement for real world accessibility though.
What has been your most adventurous feat in technology?
Learning how to edit videos. It was startling. I started using video blogging as a different platform, really different, I didn't know you could edit so it had to all be done in one take. It wasn't scripted, it was just me talking to camera being very cross. Then i found out you can stop recording, start again, and put the two together - so if you lose your thread in the middle of a sentence but get your flow back 30 seconds later, you can edit the gap out.
It was the that made the whole Broken of Britain thing come off, though I didn't intend it to start a campaign. I was so horrified by the comprehensive spending review that i made this amateur video all in one go. The first I knew of its impact was when my friend contacted me to say congratulations on getting onto the front page of the Guardian website.
How do you use social media?
My biggest use of Twitter has often been when I'm not well enough to focus. There's something about it being only 140 characters meaning it's short enough for me to manage a bit of tweeting even if I can't manage to concentrate on a whole television programme, for instance.
People drop on and off Twitter without giving notice. If you disappear in the middle of a conversation and don't come back for 12 hours because you're exhausted or in pain, no one is offended. It's not a social faux pas like putting the phone down.
What tech innovations would you like to see?
I'd like to see businesses appreciate how the internet can change the way we are able to work if we choose to do so. I think it would have very specific benefits for disabled people with fluctuating conditions who don't fit into existing work patterns.
If you're feeling up to it, you might perhaps be able to make greetings cards or something like that but you wouldn't then be allowed to sell them on eBay because it would negatively affect your benefits. We're saying it shouldn't all be about sanctions and compliance.
Traditional homeworking is things like stuffing envelopes; it's low paid, tedious, often exploitative, and completely out of reach for lots of impairments. But if your skills are that you are a trained dressmaker, you may feel able to take on two pieces of work a year that you could find through the internet. You wouldn't be able to make a living that way but you would be pleased to do a bit of sewing and then sell it on. In a one-to-one meeting I had with him at the Conservative Party conference this year, Iain Duncan Smith seemed open to such ideas and offered the example that you could be an accountant who puts in three hours a month.
Our idea is that you wouldn't come off benefits, it's not about that, but you would gain by having a bit of extra money and you'd be keeping your hand in. Business then benefits by having someone to take on small chunks of work.
It's about being able to make a contribution with a recognition from society that you're not someone who's festering at home on benefits because you choose to, and that you are willing to contribute in whatever small way you can.
• This interview is part of a series about technology and disabled people. Follow like the or bookmark the Ouch! blog homepage to keep tabs on this series, which continues throughout November.
Comment number 1.
At 30th Oct 2012, Pat Onions wrote:Excellent as ever Kali. However there is a group in society who have enormous difficulties in accessing technology. The blind. Talking computers are brilliant but painfully slow for us. Mobile phones or whatever they are called now are really a no go area. The gov doesn't realise just how impossible it will be for us to register for anything on line. Still we smile! Pat x
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Comment number 2.
At 30th Oct 2012, diversejustice wrote:Helped an elderly lady,1 hour per fortnight in exchange for a product.Asked Jobcentreplus to register it under permitted work.They said no need to register as was under the thresh hold,asked for it to be registered any way in the hope the support organisations would take note.The result being a period of constant lost paper work by jobcentreplus and 3 years of going through a complaints procedure.
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