John Evans

alt=This is a side-on mid-shot of Evans, sat in his wheelchair, wearing a pink jumper. John Daniel Evans OBE (25 May 1950 – 13 January 2025) was a disabled person, campaigning since the 1970s for better social care to support disabled people’s independent living in the community. He is recognised for his pioneering international work with multiple awards. He held leadership roles in advocating independent living across Europe as well as working with the UK government, and formed a bridge between the EU and UK with the USA in sharing campaigning lessons and promoting best practice.

Early life Evans was born on 25 May 1950 in Swansea, and attended Dynevor Comprehensive School. (He later studied at the Open University in foundation courses in the arts and in social sciences, 1980–1984.)

He moved to London around 1968 aged 18 years and spent some time living in Toronto before returning to the UK and developing an interest in Sufism including meditation, leading to volunteering in a peace project in Jerusalem.

Accident Evans was with the Sufi group when they decided to set up an Intensive Study Centre in Torreon, New Mexico in the Manzano Mountains near Albuquerque. After being there four months, aged 25 years, he broke his neck while exercising, resulting in permanent high-level paralysis. After five months in a local hospital he was flown back to London from Los Angeles, meanwhile having got to know people at the Center for Independent Living (CIL) in Berkeley, California.

Back in the UK he stayed at the spinal injuries unit at Stoke Mandeville hospital and then lived with two non-disabled friends in a cottage in the New Forest for eighteen months until that arrangement broke down in 1978. It was closed in 2007 and the land sold for new housing.

His campaigning for independent living was based on his experiences as a resident in this Home with its restrictive environment and lack of autonomy. With fellow residents he set up initiatives to support disabled people leaving institutional care to live independently with funded support for personal assistants (PAs). This move marked an important starting point in the independent living movement in the UK.

Project 81 Evans held a leadership role in the Project 81 group, founded in 1979 initially of residents at Le Court who sought to escape the confines of institutional living. Other members included Philip Mason, Tad Polkowski, Philip Scott and Liz Briggs. This group was later described by the disabled musician Ian Dury as, “The Escape Committee”.

Evans returned to the USA, now as a wheelchair user with a personal assistant, for six weeks to record interviews (later transcribed) with 32 people in the independent living movement, including Judy Heumann and Ed Roberts. He also visited the Grove Road independent living project in Derbyshire, founded in 1976 and established a lifelong friendship with Ken and Maggie Davis.

European Network on Independent Living (ENIL) Established in April 1989 at a meeting in Strasbourg, the European Network on Independent Living (ENIL) was created when around 80 disabled people from around 14 countries converged on the European Parliament to discuss independent living and decided to establish a permanent network. He was the ENIL President for 14 years from 1996 to 2010.

Evans was on the Board of Directors of both the European Network on Independent Living (ENIL), and the European Disability Forum (EDF) from 1996 until 2014. He was one of the founding members of the European Coalition of Community Living (ECCL).

In 2023 he said there was an “already dwindling PA market following Brexit, the pandemic and now the rise in the cost of living ... It has never been more difficult finding new staff in my experience of 40 years of employing my own PAs ... This puts an enormous burden on us as well as an increase in stress because of the worries about remaining living independently that could result in the loss of our freedom."

Recognition Evans' efforts were recognised with numerous awards, including an OBE award by Queen Elizabeth II in 2001. He was made an Honorary Fellow of the Centre for Citizens Participation at Brunel University. He received palliative care for over six years while continuing to live independently in his home, which included distinctive Sufi artworks.