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Ron Coleman is a playwright, poet, dancer and painter – he also has dementia

The Isle of Lewis man has achieved so much since his diagnosis and and has even written a musical about dementia.

Ron Coleman has been on a whirlwind journey since he was diagnosed with a cognitive impairment six years ago. Image: Supplied by Ron Coleman
Ron Coleman has been on a whirlwind journey since he was diagnosed with a cognitive impairment six years ago. Image: Supplied by Ron Coleman

Ron Coleman has dementia. He also has a few things to say about life.

“You know how everybody talks about mindfulness and living in the moment and all that stuff,” says Ron, 65.

“Well, I’ll tell you what, dementia is brilliant for that. Because when you live in the minute you are in, you really live.”

For the past six years, this chatty, fun-loving Isle of Lewis man, has been doing everything he can to live in the moment.

That’s how long it’s been since he was diagnosed with mild cognitive impairment, a diagnosis that 18 months ago was upgraded to vascular dementia.

Ron has lived his life in the moment since his dementia diagnosis. Image: Supplied by Ron Coleman

Ron initially struggled to come to terms with his condition, which his family first noticed when he started leaving gas hobs on unattended, or when they found him staring into space.

But the diagnosis had a particular effect on Ron. It unleased a previously untapped wellspring of creativity that led him to become a prolific writer and performer.

It was poems first, then later plays. He’s even written a musical – called, of all things, Dementia: The Musical — that centres on leading figures in dementia advocacy.

And in his most ambitious project yet, Ron is curating the first Scottish dementia arts festival and Highland-style gathering for people with dementia.

The first Scottish Arts Dementia Festival will be held next week at Eden Court in Inverness. Image: Sandy McCook/DC Thomson

The four-day event at the Eden Court theatre in Inverness mixes keynote speakers on the condition, creative workshops and the staging of plays and lives shows including a debut for a play written by Ron and directed by his daughter, Francesca.

“People talk about dementia almost as if it’s a terminal illness,” Ron says. “But it isn’t. Dementia is something we can live with, and we can live okay with for quite a long time.”

Why Ron started writing ‘dark and angry’ poems

Ron was working as a trainer of social workers and nurses when he was first diagnosed.

He’d hardly done anything creative in his life before. But he started writing poems to help make sense of what was happening to him.

At first, what came out of him was extremely raw.

“I needed to express how I was feeling and I was quite angry,” says Ron, who went on to document those first few months in a book. “So my poetry in the early days was quite dark and angry.”

But eventually, he discovered a more lighter side. The poetry got funnier, more playful.

“I just started making fun of my own experience of dementia,” he explains. It was an attitude that came in useful when he lost his leg.

It happened after he accidentally stood on a screw in his bare feet. Because Ron has diabetes and neuropathy – which numbs his extremities – he didn’t feel it, so the screw stayed in his foot.

“Every time I put a shoe on I was pushing it into the wound,” Ron says.

Ron had his right leg amputated a year ago. Image: Supplied by Ron Coleman

The wound festered, got infected and eventually became gangrenous. Ron’s right leg was amputated from below the knee a year ago this month.

The amputation, however, added more fuel to Ron’s creative fire.

Together with a fellow amputee he met in hospital, he recently filmed their collective stumps to be animated for a short movie.

The film will be shown to patients about to undergo an amputation so they have some idea of what life is like without a limb or limbs.

“You lose your leg, and it’s very sudden,” explains Ron. “You wake up the next morning, and then you just have to learn daily and we didn’t think that was good enough. We think people should have more information.”

Daughter Francesca ‘herding cats’ as she directs Ron in new play

Ron’s latest undertaking — other than the watercolour painting classes he’s just started — is wheelchair dancing.

He partly took it up out of a promise he made to wife Karen (“I think it was about a week after I lost my leg, I said to my wife I was going to dance”) but also because the play he will perform in at the dementia arts festival contains a couple of dance numbers.

Ron at work on his wheelchair dancing. Image: Ron Coleman

He’s loving it so far, not least because it’s keeping him fit. It also gives him a chance to spend more time with the family — Karen acts opposite him in the play while youngest daughter Francesca is the director.

“It has been a blast in rehearsal,” Ron says, laughing. “Though it’ll be like herding cats for Francesca, because neither me nor her mum are very good at taking directions.”

Dementia – The Musical just needs £100,000

The play will get its debut at next week’s arts festival. Ron is excited to get it in front of audiences, but not as eager as he is to get another of his projects up and running.

“The musical’s the next thing ,” says Ron of Dementia — The Musical. All it needs to go on tour next year is £100,000, which he hopes to convince Creative Scotland to give him.

Rehearsals for Dementia – The Musical. Image: Supplied by Ron Coleman

He doesn’t sound entirely convinced he’ll get it, though, and is open to other offers.

“If you know anyone that’s got £100,000 that would help,” he laughs.

The musical centres on Scots who have advanced the human rights of people with dementia.

One of them, James McKillop from Glasgow, tried to go to the first dementia conference in the country but wasn’t allowed in because he had dementia.

“A year later, he was a keynote speaker at the same conference,” Ron says.

In the musical, James is one of three people with dementia put in a care home by an authoritarian government. The trio are then forced to argue their case to get out.

“It’s a trial, basically,” Ron says, “but done as a musical.”

Ron Coleman and the politics of dementia

It’s also pointedly political, fitting neatly with Ron’s own dementia activism. His goal is for people like him to be seen as useful members of society – people who can, for example, write poetry, paint and maybe even wheelchair dance.

It’s no coincidence the festival will open with a speech from MSP Maree Todd, the minister for mental health of Scotland.

Maree Todd will open the dementia arts festival in Inverness. Image: Kris Miller/DC Thomson

Ron says the event will showcase the good the arts can do for dementia, instead of the bad it can often inflict.

“The arts, especially cinema, dementia is always shown in the end stages,” Ron says. “You don’t see the joy that can happen, all the fun that people can have.

“As people that love the arts, I think that’s what we’re trying to show.”

Artwork by Caithness painter John Scotter, who has dementia.

For Ron, the festival is yet another achievement since his diagnosis – further proof that life is still for living.

And though he knows his capabilities and condition may change with time, he’s still focusing on the moment.

“What the arts often shows of dementia is people forgetting who everybody is,” he says. “And that may happen to me, that might be my future. But it’s not my now.”

The inaugural Scottish Dementia Arts Festival will take place at Eden Court Theatre in Inverness from November 13 to 16. It will include the third 100/6000 Gathering, a project also started by Ron that discusses issues around dementia and the arts. Admission is free. Ron is also the co-founder of the Deepness Dementia radio station, which can be listened to here.