Obituary: Ron Coleman, mental health activist, artist and ‘demented poet’

This work continued right up until his death. In September this year Ron and Karen staged their third Dementia Arts Festival at Macrobert Arts Centre in Stirling, having previously run the annual event in Inverness and Edinburgh, bringing together hundreds of activists, artists, community groups, service users, and mental health professionals from across Scotland. In autumn 2024 they toured Dementia the Musical, a theatre show Ron had written about the history of dementia activism, to 12 venues across Scotland. In a four-star review, Scotsman theatre critic Joyce McMillan described the show as ‘‘profoundly life-affirming’. Dementia the Musical was Ron’s second theatre production, following Caught in this Moment of Time, a play about his own experience of dementia which also toured nationally.

Ron often said it was dementia that made him an artist; with memory loss forcing him to focus on the present, he leaned into his creative instincts. While writing his play he would read the script every day to help him remember it. He also wrote poems and short films and collaborated with Hebridean musicians on an album that supported people living with dementia to tell their own stories through songwriting. The album, Born to be Alive, included Ron’s own song The Fighter, in which he candidly described the impact of his dementia diagnosis. Shortly before his death he had also been working on two new projects with BAFTA-winning film director Ian Bustard.

As remarkable as Ron’s achievements in dementia activism were, they were in some ways a footnote to decades of tireless international campaigning by a man who had a profound effect on people all over the world, hundreds of whom have posted fond tributes on social media since his death in Italy on 19 October. Ron became a mental health activist in the early 1990s as an ambassador for the Hearing Voices Movement, supporting the creation of hearing voices networks in Australia, New Zealand, the USA and Canada, and all across Europe. He was a leading figure in the UK movement, establishing numerous networks and organising training for voice hearers and their families.

This work was rooted in considerable early trauma. When he was 11 he was sexually abused by a Catholic priest. By 17 he was a widower following the sudden death of his first wife Annabelle. But it was a third incident, breaking his hip at 23 while playing rugby, that Ron said was the ‘tipping point’ for his mental health, preventing him from continuing with a physical activity he had used to channel his anger (he would later call rugby "my first form of self-harm”). He began to be tormented by voices soon afterwards, and spent over a decade in psychiatric care before discovering the Hearing Voices Movement in 1991 via a support worker. He began to understand how the voices he was hearing had been triggered by childhood trauma. “I found ways of understanding my voices, of taking control of the voices,” he later said, “which meant I really took my life back.”

He met his second wife Karen Taylor, a psychiatric nurse, at a Hearing Voices Network conference in 1998. The two formed an instant bond and would soon become life-long work colleagues as well as a married couple. Together they founded Working to Recovery, a consultancy and training company. Their work training people in recovery practice took them to Australia, New Zealand, South Korea, Japan, Hong Kong, Canada, the US, Palestine, and across Europe. Ron also wrote a book on the subject, Recovery: An Alien Concept?, drawing on his own experiences.

Ron was diagnosed with dementia in 2017. Rather than slowing him down, it merely shifted his focus. He and Karen founded a new organisation, Deepness, led by people with dementia (pointedly, nine members of its 12-strong board were people living with dementia). Deepness set up an online radio station, Deepness Dementia Radio, a Dementia Wellbeing College and, in 2022, an online Dementia TV station, “providing dementia news, challenging stereotypes and shows about living well with dementia”. Ron continued to play a key role in the organisation’s activities up until his death, despite a series of increasingly frequent health setbacks including a leg amputation, heart problems and increased memory loss. A survivor to the end, he took pride in telling people that he wrote a funding application for the inaugural dementia arts festival while on morphine in a hospital bed.

Ron’s approach to activism was radical. Having been institutionalised himself, he was passionate in his belief that people with mental health problems should not be incarcerated and needed to be in control of their own treatment. He had the same view of dementia; the villain of Dementia the Musical was a character called Rigid System who wanted to imprison his heroic dementia activists and take away their rights. Caught in this Moment of Time was perhaps a gentler form of activism, a domestic comedy inspired by his fractious relationship with a digital home help. All of his work, though, was characterised by extraordinary energy, passion, determination and resilience, as well as a sense of humour. His response to having a leg amputated was to make a comedy animated film about talking stumps.

He is survived by his devoted wife, Karen, and a blended family of seven children, two of whom grew up in Lewis. “In a funny sort of way dementia’s brought our family together,” he told an interviewer this year, explaining that it had resulted in him spending more time with Francesca, his youngest daughter, sometimes writing together. Inheriting her father’s passion, Francesca Taylor Coleman has gone on to be a dementia activist in her own right.​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​

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