Graeme Ellis was watching live TV coverage of the budget on 16 March when George Osborne announced plans to cut personal independence payments for disabled people.
At the time, he was a Conservative Party member, and ran the website for the Conservative Disability Group.
But Graeme is also a long-standing UNISON member and is active in the disabled members’ group, the homecare forum and in his service group.
On top of that, he is a wheelchair user and runs a charity, Here to Support, which offers help and advice to disabled people. He knew from direct experience what cutting the independence payments would mean for many disabled people.
So he decided to do something about it, in the process kicking off a chain of events that included the resignation of Iain Duncan Smith and the reversal of the cuts.
Wanting to protest against what was happening, Graeme took down the Conservative Disability Group website and replaced it with a message saying: “This website is temporarily closed due to disability cuts and the resignation of Graeme Ellis.”
“I thought it was an inconsequential little protest,” he says now.
But his local Labour MP Cat Smith caught wind of what he’d done and tweeted it. And for the next few days, Graeme’s story was all over the news. He was interviewed in the Mirror and on BBC’s Newsnight, while Sky News sent cameras to the UNISON meeting he was attending.
Other Conservative members and MPs also started speaking out against the cuts.
By the Friday, Iain Duncan Smith had stepped down and by Sunday the government had decided not to cut personal independence payments.
Running a charity that helps disabled people access their payments, Graeme says that changing the Conservative website was a gut reaction.
Here to Support helps disabled people and people with learning difficulties organise their support, their homecare and generally access the right services.
And Graeme is good at what he does. From challenging the removal of financial support in the courts to offering employment law advice, he uses his own experience and knowledge to help vulnerable people.
In 1984, he started experiencing symptoms of a disease called neuropathy, which affects the nervous system. He has muscle wastage, visual and hearing impairment and uses a wheelchair a lot of the time.
When he first started using the homecare service he spent so much time waiting for his carers that he was effectively housebound. “I didn’t want to do anything,” he says. “I didn’t want to recover.”
But then his homecare situation changed and he got a regular homecare worker. Better homecare meant Graeme got his social life back – he was able to go to the pub and on holidays again. And more than that, he felt able to work, so he started looking for a job.
He filled in more 200 application forms; as he struggled to find work he also battled with the complexities of form filling and bureaucracy that his care involved.
Navigating these convoluted systems made Graeme realise that other people must struggle too. So, along with two friends, he decided to do something about it, and set up Here to Support.
The charity has been running for two years now and is going strong. Between just April and July last year it helped 1,600 people, and the charity is now part of a wider partnership that supports vulnerable people, called Independent Me.
Graeme’s focus as the founder of the charity, as a disabled person and as an active UNISON member has been on helping others. He didn’t expect that his post-budget decision to change a website – one that many people probably weren’t aware of – would have the impact it did.
But he’s pleased that, at the moment, disabled people are getting positive press. “They’re not calling us scroungers right now”.
Graeme has had lots of messages of support from UNISON members, including general secretary Dave Prentis. He says that UNISON is and always will be an important part of his life, stressing that the union has done many things that have benefited disabled citizens – not just its members. And he urges all disabled people who work in public services to join.
Despite the government U-turn on the personal independence payments, Graeme wasn’t quite finished with the website.
He originally paid for the site hosting himself, and was never reimbursed, so he has decided to keep it and link through to a new site called Disabled Voices, which will highlight disability issues.
And he has not renewed his party subscription.
Read our full account of Graeme’s story: when the cared for becomes the carer
