Disabled people might still be waiting for all UK trains to be accessible were it not for the success of a high-profile campaign led by John Knight, who has died of sepsis aged 67, after himself overcoming profound disabilities from birth and becoming a leading figure in the charity and public sectors.
Knight was responsible for policy and campaigns at the disability charity Leonard Cheshire during passage of the Disability Discrimination Act 2005, which was to set a deadline for railway carriages to be accessible. Train companies were pressing for a date of 2035, to maximise the life of inaccessible rolling stock, but the campaign persuaded the House of Lords to back an amendment to the legislation with a time limit of 2020. The change was then accepted by the Labour government.
At the climax of the All Aboard campaign, Knight arranged for a horse-drawn hearse to deliver to MPs and peers thousands of postcards on which disabled people had written what age they would need to live to in order to benefit from a 2035 deadline. The slogan for the day was: “I’ll be dead before I can get on a train.”
The tactic well reflected Knight’s mischievous personality and penchant for pranks. He had a particular love of fireworks and one of his party acts, according to friends, was to adapt his crutches as makeshift mortar tubes. At Leonard Cheshire he was seen by most, though not all, as a refreshing influence on an organisation that was at the time shaking off a traditional image and a somewhat patrician culture, and was struggling to introduce people with disabilities into its ranks.
Knight, who was with the charity for 16 years and became a board-level director, robustly defended his decision to work within the establishment in the face of criticism by other disability activists. His other achievements included disability equality training for London bus drivers and the securing of some safeguards for disabled people under Labour’s 2008 benefit changes that put emphasis on work capability. He later spoke of the early 2000s as “a heady time with great progress for disabled people”, but conceded that he had worked with Labour “sometimes too closely, on reflection”.
In recent years, he again differed with many activists by openly supporting moves to legislate for assisted dying for people with terminal illness, becoming a board member and subsequently patron of the pressure group My Death, My Decision. He claimed to speak for a silent majority of disabled people.
His childhood had been extremely challenging. He was born in Bristol, the only child of a painter and decorator, also John, and his wife, Janet (nee Matthews), a comptometer operator, but his parents found it hard to cope with his disabilities. He remained in hospital for 10 weeks and was then transferred to the former John Capel Hanbury hospital home for disabled children in Woodford Bridge, Essex, where a decision was taken to amputate his very twisted legs and fit him with prosthetics. It was not until recent years that he used a wheelchair.
At 18 months, he was placed in care of the Barnardo’s children’s charity. He was to describe his own experience of this as “transformational”, while acknowledging that it was not for many others, and after an initial placement at the former Ethel Davis special school in Ilford, Essex (now in east London), he flourished from age 10 at the Chailey Heritage special school in East Sussex, where he became head boy, and at Hereward College in Coventry, where he took O-levels. At Chailey he developed a lifelong passion for opera through occasional free tickets for productions at nearby Glyndebourne. He later told friends that he had seen Benjamin Britten’s Peter Grimes 33 times.
A particular influence at Barnardo’s was a member of staff, Judith Hocking, who was to become a mother figure. She frequently had him to stay at her parents’ house in Leominster, Herefordshire, something that today would not be permitted, and he grew to regard the Hockings as his family and Herefordshire as his home patch. He was to remain close to Judith until her death in 1999.
At 16, however, he went back to Bristol to take his A-levels at Filton College and to see if relations with his birth family could be built. They could not. He was living in a bedsit in the city when he collapsed and was diagnosed with type 1 diabetes, which he had unknowingly inherited from his mother. The condition, and resultant neuropathy, became an additional lifetime burden.
Knight went on to Nottingham University, which was at the time making special efforts to welcome students with disabilities, and graduated in 1982 in zoology. He later recalled that he had chosen to research urban seagulls as his thesis, because of his difficulties travelling, but had done so without ever actually spotting one in the city. He enjoyed an uproarious social life featuring many drunken escapades – and several hair-raising capers involving his blue Invacar – and he once appeared in a student revue having his “legs” sawn off by a supposedly bungling magician. He returned to studies in later years, taking an Open University degree in political and social sciences in 1992, and a diploma in voluntary sector management at City University Business School in 1997. He received an honorary doctorate from Nottingham in 2012.
After a brief and ill-fated first career via a banking graduate trainee programme, Knight joined the civil service in 1985 and served for five years in the then Department of Health. In 1990, he moved to become principal disabilities services officer at Hammersmith and Fulham council, west London, and in 1994 he moved again to Leonard Cheshire to build its policy and campaigns arm.
Among a raft of subsequent public appointments, which became especially numerous after he left the charity in 2010, he was a commissioner of the former Commission for Social Care Inspection from 2004 to 2009 and a board member of the Charity Commission between 2009 and 2013. He was on the board of the National Council for Voluntary Organisations from 2003 to 2008, playing a key role in its policy development, and was a board member and tenant champion at Habinteg housing association, which was for many years his landlord, from 2019 until last November. He served as a magistrate in north-east London for 28 years until 2020. In 2011 he was made CBE.
He met Ruth Hall, a campaigner for social justice, through Guardian Soulmates in 1996. They were together for the rest of his life, and married in 2021. Ruth had a son, Alex, and in the early 2000s the couple also took in Shuxin Dai, a young adult whom they regarded as a daughter. Knight had a warm grandparental relationship with Shuxin’s son, Jonathan.
Ruth and Alex survive him.
• John Knight, disability campaigner, born 20 October 1958; died 2 December 2025
