Independent living has transformed lives and should be seen as a “treasure” that should be “celebrated” rather than “taken away from us”, one of its pioneers has told a parliamentary meeting.
John Evans, who 30 years ago was liberated from a Cheshire Home when he used council funding to set up his own independent living scheme in Hampshire, laid down the challenge to politicians from all parties.
He was speaking at an emergency meeting on the future of disabled people’s independent living in the UK, organised by Inclusion London and Disabled People Against Cuts (DPAC) and held in one of the largest committee rooms in the House of Commons.
It was held in the wake of three court of appeal judges upholding an appeal by five users of the Independent Living Fund (ILF) who had challenged the decision to close the fund.
Evans said he was “amazed” that the government had questioned the value of independent living when it had probably been one of the “biggest success stories over the last three decades”.
He said that it was a campaign by disabled people that led to ILF being set up by the Conservative government in 1988. “We as disabled people had a direct impact on the government of the time and that was probably one of the big success stories. That is why we cannot let it be taken away from us.
“It’s a shame. Independent living has been flourishing in the UK but we find ourselves coming here to defend it amongst politicians.”
He added: “Over the years we have seen independent living transform the lives of so many disabled people from passive recipients to active citizens and employers.”
Evans told the meeting that the right to independent living needed to be enshrined in law, and that it should be viewed by the government as a “treasure” to be “celebrated and not taken away from us”.
DPAC used the meeting to release a new report, The Crisis in Independent Living and the Cumulative Impact of Other Cuts on Disabled People, which called on MPs to take “urgent action” to protect disabled people from the “devastating impact” of the cuts to care and support and social security.
The report calls for: an explicit “independent living” duty to be added to the care bill; a legal right to independent living; a parliamentary debate on MPs’ responsibilities as signatories to the UN disability convention; independent living support to be free at the point of need and funded from general taxation; and ILF to be kept open and reopened to new applicants.
The DPAC report also calls on the government to set up an independent living taskforce; for MPs to meet ILF-users to hear their stories; and for a full cumulative impact assessment on how government policies have affected disabled people’s right to independent living.
The meeting also watched The Coalition’s Cruellest Cut, a film by the campaigning journalists Kate Belgrave, from the website False Economy, and Ros Wynne-Jones, from the Daily Mirror, which followed campaigner Mary Laver as she demonstrated how her life would be different without ILF.
It shows Laver being forced to give her two dogs away, unable to finish her lunch because she is only allowed one hour of care, staying in a wet incontinence pad for hours at a time, and sitting alone in her chair all afternoon.
Laver even suggests that she might use the water feature in her garden to take her own life if her ILF is taken away from her.
She said after the film: “I am absolutely petrified of my future. My weight has gone down to six stone. I am absolutely petrified of growing old in England today [she is 66].
“At one point I almost snapped, so I had a little brick wall built around my pond so I didn’t snap and go in.”
Kate Green, Labour’s shadow minister for disabled people, who was hosting the meeting, repeated comments she made to Disability News Service earlier this month, that she could not promise a Labour government would save ILF but that she was “committed to independent living”.
She said: “What I think is very important is that I go and reflect on what I have seen in the three-quarters of an hour I have been here and we make this the start of a conversation between you and me and all of my colleagues so we can best design systems… that recognise people’s right to make their own decisions.”
But there was some frustration from disabled people at the meeting with Labour’s current position.
The activist Tara Flood said that all that was needed was for Green to say that Labour was keeping ILF, while another campaigner added: “We don’t want you to redesign the system, we just want you to reinstate the system.”
The meeting heard that disabled people’s minister Mike Penning had not replied to an invitation to attend the meeting.
Tracey Lazard, chief executive of Inclusion London, said the court case had “given us a window” to show why ILF must not only be kept open but also reopened to new members.
The Labour MP John McDonnell, who has been a strong supporter of the disabled people’s anti-cuts movement, said: “We are not asking for the moon, we are just asking for the status quo.”
He said: “What Kate Green said today was quite important. She was saying that the ILF should be the minimum that you should expect.”
He said that dialogue, lobbying and direct action were needed in order to persuade politicians to include the contents of the UK Disabled People’s Manifesto – which includes a demand for a legal right to independent living – in their own parties’ manifestos.
27 November 2013