Tribute by Rachel Elliott

Remembering John Evans OBE

I first had the pleasure of meeting John in the late 1980’s through my late partner, John Millar (aka ‘Jhalib’) – they were longstanding close friends and Sufi ‘brothers’ travelling widely together in the 1970’s.

On 28 July 1988 I had the privilege of marching alongside John, and thousands of other disabled people and allies, in the British Council of Disabled People’s (BCODP) rally in London to challenge the government cuts in disability benefits. This campaigning, in which John was a driving force, led the government set up the new Independent Living Fund (ILF).

I was, and remain, greatly inspired by John’s life and work as a pioneer of the Independent Living movement. At the time, of the BCODP rally, I was working as a dance artist, working closely with the D/deaf and disabled people’s community and arts scene, and was developing as a sign language interpreter, so I had a professional as well as a personal connection with him.

I became closer to John following the death of my partner in 2017. At his funeral, John read a Sufi prayer and I had the pleasure of meeting Jana, his lovely wife. I enjoyed two wonderful visits to their home in Petersfield in the following years.

John was a tower of strength in giving advice and loving support to me as my daughter became increasingly disabled – bedbound and tube fed – with very severe ME. I had numerous email exchanges and calls with John as he generously guided and encouraged me through the process of fighting for NHS Continuing Healthcare funded care for her, which was finally achieved after 3.5 years in 2021. Having the right level and type of care in place has supported my daughter’s improving health and growing level of autonomy. We owe so much of this to my friendship with John and to his trailblazing work!

Seeing my chronically ill daughter as a disabled person, and through the lens of disability equality and rights, spurred me on greatly through the many challenges I have faced as her mother, principal carer, and advocate. It has also informed my own stance to activism and contributing to the ME community, such as serving on the steering committee of the Priority Setting Partnership for ME/CFS in 2021-22.

My daughter, now 28, aspires to live independently in a fully accessible home of her own by the time she is 30. Inspired by John’s work, with his belief in this as a right for every disabled person, I am working towards this goal. Although my daughter sadly never met John – we live in a first floor flat with no lift – she has been greatly inspired by his life and work and touched by his generosity.

John was a wonderful, principled, kind, and supportive friend. I am in awe of his legacy and feel so blessed to have known him.

Rachel Elliott

13 January 2026

 

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