There’s nothing wrong with a person-centred plan, if the plan is to make it happen. But who lives by plans anyway? Isn’t it better to enable people to follow their dreams? ‘Person-centred dreaming’ is a radical idea to transform social care.

Man in sunglasses reflected in glass of framed USA flag, Person-centred dreaming
Jimmy at WDAI radio New York

I love this photo of Jimmy from Heavy Load; it tells me everything. Jimmy is living his dream. He is at a radio station in New York City talking about a movie in which he was a star. That evening, we played at a cool venue, Arlene’s Grocery, on the Lower East Side of Manhattan. The photo has a dreamlike quality as he gazes past the American flag out of the window across the skyscrapers.

It’s the stuff of dreams and we all lived in that same dream.

How Jimmy’s dream started

The Heavy Load movie tells the story of Jimmy, who used to play his old guitar in his bedroom. He’d sing and strum along to his favourite records, and he has a beautiful voice, a rich baritone.

His support worker asked if he wanted to play guitar more. Jimmy, a man of few words, replied “I want to join a band.”

Mick, one of Jimmy’s support workers, picked up on this immediately as he had always played in bands. He and Jimmy wrote an advert and sent it to the organisation that supported Jimmy.

Simon (vocals) and Michael (drums) replied, and two other support workers named Paul also signed up, forming the band. Mick asked Jimmy what he thought the band should be called, Jimmy replied “Something heavy.” Heavy Load was born.

I’m not always good at putting myself forward, so I had yet to reply to the advert quickly enough. Both original Pauls only lasted a month (for various reasons), so I jumped at the chance of replacing them, and luckily, my name was also Paul, so I fitted right in.

The early gigs

In those early days, our gigs were even more chaotic than the ones we became known for. Those early gigs were often in daylight, in day centres or in the local hall made of tin in Newhaven. We only had a few songs, and once someone pulled the plug out of the wall as they’d had enough of us.

I’d come from my old band, which had gotten to where we were taking it so seriously that we’d forgotten to have fun anymore. Heavy Load was pure unbridled joy, even though adjusting took me a while. Luckily, Mick and Simon embraced the spirit of punk, and I just followed along.

Man with down syndrome playing white drum kit in gig venue, person-centred
Michael at Arlenes Grocery Lower Eastside NYC

Then there was Michael. He was not the most conventional drummer, but he had a unique style that we embraced. Sometimes, we were rocking, and sometimes, we’d fall apart into one of his weird improv moments, excited to see how we’d find a way out.

Being a punk band was never our intention. Michael loved his rock ‘n roll, Jimmy The Beatles and Status Quo, Mick Chic and The Clash, the Pixies, and Simon loved Bros and George Michael. The only common ground we found was a mutual love of Kylie.

Arguments about music would forever dominate our life on the road. When we finally called it a day after 15 years of mayhem, we cited ‘musical similarities’ as the reason we could no longer continue!

Glastonbury, TV theme tunes and road trips

The band went on to play two Glastonbury Festivals, support Sham 69, The Blockheads, write a Channel 4 Theme Tune (Cast Offs), release three albums, tour the UK, play New York, and make road trips across Europe. One to play at a bombed-out squat in Copenhagen. 

We’d also been the subjects of a feature-length movie, Heavy Load, which The Guardian ranked No.9 in its top 20 music documentaries of all time. There’s us listed alongside Aretha, Dylan, Miles, Stevie, The Beatles, and The Stones!

Heavy Load film poster, Person-centred
Heavy Load movie poster

Looking back, I find it hard to believe we did all those things, but the band’s story didn’t start with Jimmy saying: “I want to play two Glastonbury Festivals, write a tune for Channel 4, play in the Eden Project and play in Trafalgar Square – twice(!), oh and start a charity campaigning for rights for people with learning disabilities too!”

Jimmy just said, “I want to be in a band.”

Lots of extraordinary things happened to us as a band, but we always had the attitude of pushing things to see how far we could go, embracing the opportunities and seeing what could happen next. 

Do we take that approach with the people we support?

A few years ago, I ran a workshop at a conference in Chester where we asked, “What do you dream of doing? And what needs to happen to make that happen?”

What was upsetting and so frustrating was that 75% of the people said things like 

 “go to the pub to see my mates.”

“go out bowling.”

“watch a movie with my mates.”

None of these things should be dreams; they could happen this evening if not next week!

So why are we settling for so little when it comes to supporting people with learning disabilities? It’s not down to funding; it’s down to us forgetting to approach our work with joy and share that with the people we support, becoming part of their dreams and making them happen.

We don’t need to create great, life-changing dreams for people (or do we call those care pathways these days?). We need to start by asking the person we support what they’d like to do and then taking the responsibility to help them make that happen. Social care should be the support that enables people to live their lives, not be trapped.

What unfolds after that will unfold, and we need to be open and receptive to supporting that person on their life journey with an open mind.

Person-centred dreaming

And here’s a photo of Jimmy in Times Square the Saturday after we played. It was a great gig and a great week. Our adventure in New York City, living Jimmy’s, and all of ours, dream.

Man in sunglasses in Times Square, New York at night. Crowds in background, Person-centred
Jimmy in Times Square New York

When you’re a support worker, it’s an absolute privilege and a lovely job. Your job is supporting someone to live the life they want and you should get a lot out of that yourself. It may not be supporting them to fly across the world or play Glastonbury, or it could be something wilder. Instead, follow their dream! Working in social care can be a brilliant job.

Here’s a short video about Heavy Load’s trip to New York.


Postscript

‘I dream of seeing Peterborough United play at Wembley’

I’ve written previously about the man who dreamt of seeing his beloved Peterborough United play at Wembley, but didn’t because his support workers couldn’t put a plan into place quickly to make it happen.

Well, as I was writing this, I heard the news that Peterborough has made it to the play-off finals. I only hope this time he gets to see it. What a day out that would be?

Opportunities like this don’t come around often. We need to seize them whilst we can.

Do you have any stories like this to share?

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Paul Richards Executive Director, Stay Up Late

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