John Evans: Death of independent living pioneer leaves ‘massive gap’ and vital legacy

One of the founders of the UK’s independent living movement, John Evans, who was driven by a determination to ensure that disabled people could take control of their own lives, has died.

Since he became disabled in an accident at the age of 25, which left him needing 24-hour support, he had devoted his life to advocating for independent living.

Independent living was, he said, “a philosophy and practice of life” and “a basic human right”, and he spent nearly 50 years freeing himself from the restrictions of residential care and then supporting other disabled people to do the same.

He died early on Monday afternoon.

Even after his diagnosis with terminal cancer in September 2018, he had pledged to devote the time he had left to trying to save the independent living movement in the face of government-imposed austerity.

He told an event in April 2019 that was held to celebrate his contribution to the movement over the previous 40 years: “It is not going to be easy but we have to do it, to enable disabled people to continue to have choice and control.” 

The independent living movement was, as he told Disability News Service in 2023, “too precious to lose”.

He was born in Swansea in 1950 – his wife described him this week as “a very proud Welshman” – and before he became disabled at the age of 25, he had travelled widely and helped set up a peace project in Jerusalem, before becoming disabled after an accident while living with a group of peace activists in the US state of New Mexico. 

When he returned home – inspired by his contact with the US independent living movement in California – he spent time at Stoke Mandeville hospital before attempting to live independently in a cottage in the New Forest, until his relationship with his girlfriend, his main carer, broke down in 1978 after almost two years.

He was forced to move to a Leonard Cheshire residential home in Hampshire, an idea that “terrified” him.

He said in 2016: “My feeling from the beginning when I entered this home was that I was not going to spend the rest of my life there.

“I was laughed at because nobody else thought anything different was possible.

“I was determined to prove them wrong. I knew that there had to be a way.”

There was. He and fellow residents set up Project 81, which was aimed at securing their escape into their own homes by 1981, the UN international year of disabled people.

They eventually achieved their aim by employing their own personal assistants, with council funding, and he moved into a flat in 1983.

He said many years later: “There was no community support for people like myself at that time, so we wanted to create our own.

“Once funding was agreed for me, the world was my oyster. I was free to organise my life in the way I wanted.”

He helped set up Hampshire Centre for Independent Living, and in 1989 co-founded an independent living committee to push for legislation that would make it easier for other disabled people to live independently with funds from their local authority.

In a short film he co-produced in 2023 with his wife, Jana, he explained how the committee’s work helped pave the way for the introduction of direct payments through the Direct Payments Act in 1996, and the foundation of the National Centre for Independent Living.

He was awarded an OBE in 2001 for his services to disability rights and independent living.

Evans promoted the independent living movement across Europe through the European Network on Independent Living, of which he was president for 10 years, while he also served on the board of the European Disability Forum.

He always stressed that what he achieved had been in collaboration with other disabled people.

“Independent living is the cooperation, networking and collective working together of disabled people in order to be able to achieve our ultimate goals of being included in society,” he said in 2003, at the launch of the European year of disabled people.

He fought for years to persuade the government to incorporate article 19 of the UN Convention on the Rights of Persons with Disabilities – the right to independent living – into UK law, something he said would “transform everything”.

Over the last decade and more, he continued to speak out to promote the principles of independent living and co-production, and the damage caused by Brexit to the availability of personal assistants.

In 2013, he spoke about the coalition government’s plans to close the Independent Living Fund (ILF), and told a parliamentary meeting that the right to independent living needed to be enshrined in law, and should be viewed by the government as a “treasure” to be “celebrated and not taken away from us”.

The previous year, as an ILF user himself, he told another parliamentary meeting how he feared being forced back into residential care after escaping the Leonard Cheshire home: “My biggest fear ever since that day has been will I ever return to that. Right now it is looking like a reality.”

In 2016, he warned that Brexit meant disabled people risked losing access to European Union legislation and directives “which have protected our rights for the last 20 years”, as well as losing access to European funding.

He said that in 33 years of employing personal assistants, he had employed people from 12 EU member states, an option that Brexit was putting at risk.

Evans said in 2003 that it was the experience of living in an institution that inspired him “to fight and devote my life to finding an alternative”.

“Such freedom of spirit is born from removing the chains of imprisonment,” he said.

“This kind of experience is unforgettable and enough to fire me up in our fight for freedom.”

His wife, Jana Bleckmann-Evans, told DNS yesterday (Wednesday): “He fought for the life he loved so much for as long as he could, but in the end, he realised that there was no more energy left and that he had to let go. 

“I find great comfort in the fact that he was in control of his life until literally his last breath. 

“He looked comfortable and at ease when he passed over, and he was surrounded by warmth and love.

“John leaves a massive gap in my life as well as in the lives of his family, his friends, colleagues, allies and fellow freedom-fighters. 

“The condolences that have started to pour in show me just how massive his legacy is – as an independent living activist and as the amazing human being that he was, loving, caring, clever, passionate, thoughtful and simply wonderful.

“I will miss him forever.”

Credit for this article goes to the Disability News Service