One of the country’s best-known and most-respected disabled campaigners has pledged to devote the last months of his life to trying to save the independent living movement.
John Evans was speaking at an event held to celebrate his contribution to the movement over the last 40 years, following his diagnosis with terminal cancer.
It took place as disabled campaigners reacted furiously to revelations that disabled people are to be forced into residential homes against their will by Tory-run Barnet council’s new cost-cutting adult social care policy.
The council wants to save more than £400,000 in 2019-20 by creating more “cost effective support plans”, such as using residential care rather than funding support packages that allow disabled people to live in their own homes.
Evans (pictured) spoke at the event in central London of the attack on independent living over the last decade, under successive Tory-led governments, including its closure of the Independent Living Fund in 2015, and told guests: “Ever since, through all the austerity years… it has made it far more difficult for people to live independently.
“At this point in my life, looking back, we don’t want to lose all those gains we made.”
He added: “The most important thing is not to let it die, not to let it go.”
He said the work that he and others began in the late 1970s “has to continue”.
“I will do all I can do in the next year or so, however long I will still be around, to try and ensure that that will be the case.
“It is not going to be easy but we have to do it, to enable disabled people to continue to have choice and control.”
He said that he and fellow disabled campaigners first thought of “choice and control” as one of the basic principles of independent living in 1979.
He said: “What we were talking about was personal and social liberation of disabled people in this country and their quality of lives.
“After I got my diagnosis, the main thing I thought about was to maintain my quality of life regardless and to continue the spirit of independent living on this new day-to-day journey that I have.
“That’s why I remember to try to stay positive and try to stay upbeat and move in the right direction and everything I have worked for in terms of independent living in the past I have continued to do, almost with my own life now.
“It is something that does have that depth of meaning and strength and can keep people going.
“The solidarity we have achieved together is really, really strong.”
He said that one of the “saviours” of independent living in the age of austerity was the rise of co-production, which he said was “a way that we can enable it to survive, by working together with local authorities and CCGs [NHS clinical commissioning groups], and CCGs in particular need to do a lot more work to keep it going”.
The event was taking place 40 years after he and fellow residents of a Leonard Cheshire care home in Hampshire launched Project 81, which was aimed at securing their escape into their own homes by 1981, the UN international year of disabled people.
He spoke about their struggle to secure that escape into their own homes with council-funded personal assistance, which in the end they achieved in 1982 and 1983, and which helped pave the way for the introduction of direct payments.
He also spoke about his own life before he became disabled at the age of 25, when he had travelled widely and helped set up an ultimately unsuccessful “peace café” in the Middle East.
And he spoke of his work promoting the independent living movement across Europe through the European Network on Independent Living (ENIL), of which he was president for 10 years, “making speeches and running workshops and trying to inspire independent living projects in those countries”.
Evans told the event of the importance of the Disability Discrimination Act and the Direct Payments Act, both brought in under earlier Conservative governments, and Labour’s subsequent Life Chances report, “probably one of the most significant documents that has come out of government”.
Baroness [Jane] Campbell, a friend since the early 1980s, when they met at an early British Council of Disabled People event – she remembered how he had invited her to attend a workshop on independent living he was giving – told the event: “John for me and independent living for me is about our ultimate freedom to obtain our rights.
“If you don’t have independent living, you can have all the accessible buses and shops… and airports in the world, but if you can’t get out of bed and can’t choose the person who is going to look at you naked in the bath in the morning then you have no rights.”
She said Evans had helped her become an “independent living freedom fighter”.
She said: “That’s how I see myself, just carrying out the work that John told me about when I was 22; and next month I am going to be 60.”
Another leading disabled activist to pay tribute to Evans was Miro Griffiths, who sent a recorded video message.
He said Evans had shown “such clarity and understanding of the complex issues surrounding disabled people’s marginalisation and provided a real image and vision of what it is we are trying to achieve through our activism, through our negotiating with key figures, through our campaigns and through the academic work that surrounds… disabled people’s oppression in society”.
He said: “You’re one of the people I think about a lot when I am considering different ideas associated with disability rights or different ideas associated with independent living or the ideas around personal assistance… I think, ‘What would John think about this issue?’”
He said it was “fantastic” that such an event was taking place to celebrate his contribution, and the independent living movement, “and what it has been able to achieve because of your work”.
Evans said afterwards that the role of younger disabled people like Griffiths would be vital in taking on the fight for independent living.
He said: “The future is really in their hands long-term.”
He said he had been inspired by a video message from an ENIL meeting, which showed how many young disabled people were now campaigning for independent living, following ENIL’s efforts over many years to establish a Europe-wide youth network.
The event took place as the latest group of senior health and social care managers completed the Leadership for Empowered and Healthy Communities programme.
The programme aims to support these managers to have the skills and confidence to support and work in co-production with communities to improve the health and wellbeing of their local population.
Evans helped set up the programme and has been a facilitator since it started.
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