Nightlife

People with a Learning Disability Want to Party Too

We spoke to the founder of Stay Up Late, a charity that links up people with learning disabilities and "gig buddies" who can stay out with them after their support workers go home.

by Simon Doherty
10 July 2019, 11:03am

All photos courtesy of Stay Up Late.

It's 9:30PM at every gig you've ever been to. You've lost and found your friends twice, you've battled through a dense thicket of stubborn limbs to secure a decent-ish spot and you desperately need a piss – but you don't care because the main act is just about to come on.

Now, imagine someone tells you to go home at that exact point. You'd tell them: "no"; and also: "leave me alone, the headliner's about to start".

But if, like 1.4 million people in the UK, you have a learning disability, that's the time you'll have to book your Uber. As it stands, if you need a support worker to go out with you in the evening, they finish at 10PM, meaning 9:30PM is when you need to leave a gig or a club night.

Enter the Brighton-based charity Stay Up Late, which campaigns "to make sure that people with learning disabilities are able to lead active and fun social lives". One of the ways they achieve this is by providing "gig buddies": volunteers who are matched up with someone with a learning disability who shares the same interests, so that they can go on nights out together.

The idea for the charity has its roots in the mid-90s. Support Worker Paul Richards – now the Director of Stay Up Late – saw an advert from someone looking for people to join his band.

"It was from a guy called Jim," he tells me. "He has a learning disability and was living in a group home. His support worker said, 'You're always playing the guitar in your room, is there anything else you want to do with that?'"

heavy load band
Heavy Load in Berlin.

Before long, the band – Heavy Load – was founded, made up of three guys with learning disabilities (Simon Barker, lead singer; Jimmy Nichols, rhythm guitar; Michael White, drums) and two support workers (Paul Richards on the bass and Mick Williams on lead guitar).

Despite never setting out to be a punk band, according to Paul, when the group got together "that was just the music that came out". Much like the punk movement itself in the 1970s, the result was chaotic, radical and anarchistic. Over the next 15 years, the group did "stuff that we could never dream off", including playing all over the UK, in New York, in a squat in Copenhagen "for a bunch of anarchists", a couple of Glastonburys, a particularly "wild gig" in Berlin and with Sham 69 in London.

The band released three albums – The Queen Mother's Dead (2006), Shut It (2008) and Wham (2011), and by the time film director Jerry Rothwell had followed them around for two years, eventually releasing the critically acclaimed film Heavy Load in 2008, they had become fairly famous. In 2012 they played their final gig to thousands in Trafalgar Square during the Paralympics. "When I look back, I can't really believe that we did it," Paul recalls fondly. "We had 15 years of mayhem and doing stuff beyond our wildest dreams."

One of the reasons the group decided to set up the Stay Up Late campaign is because they felt frustrated when they saw their fans leaving gigs early. "A lot of them had a learning disability, so they were leaving before we got on stage," Paul says. "I always joked that we never assumed it was because these people didn't like our music, we assumed it was because there was something wrong with the way social care shifts worked – luckily, it turned out we were right."

stay up late charity brighton
Stay Up Late users in Brighton.

"I love having a gig buddy," says one Stay Up Late user, who asks to remain nameless. "Before, I was stuck indoors without the confidence to go out. Now I've got a buddy we get up to all sorts, and I've made new friends too – not just with my buddy." Another participant in the scheme, Chloe, also speaks about being "stuck indoors" before she was assigned a buddy: "I took part in a music workshop in the woods, which was relaxing and soothing. It was nice to be out of Brighton and be active, instead of sitting indoors in front of the TV."

The parent of another person, Sas, who takes full advantage of Stay Up Late is well aware of its benefits. "It's given her the experience of a lifetime," she says. "So often she’s missed out on events, and now she's been to Glastonbury and everyone else is envious. Memories to last a lifetime."

After operating for eight years, Stay Up Late has six full-time members of staff and 100 pairs of gig buddies. It's hard to understand why operations like this aren't state-funded, but for now the charity still relies on donations and volunteers.

According to recent research by UK charity Mencap, people with a learning disability often feel reluctant to leave their homes – which, they conclude, results in an increased risk of social isolation and marginalisation. According to Paul, the demand for Stay Up Late's services outweighs what one charity could ever provide – which isn't surprising, because this isn't really about nights out getting cut short or support workers having inflexible shifts. This is about the fact that having a learning disability should not exclude anyone from the very human need of enjoying live music. It's about having full autonomy over your social life and what it is you want to do with your free time.

For more information about Stay Up Late click here.

@oldspeak1