How to change the world

How to change the world

Some big news – Jerry Rothwell and Al Morrow, the director and producer of ‘Heavy Load’ the movie have got a new documentary coming out; ‘How to change the world’ opens on 9th Sep.

Jerry’s a master at telling human stories and if you’ve never seen one of his movies then I suggest you check them out. Through his films he manages to create amazing insights in to different human stories. After all he managed to follow Heavy Load around for 2 ½ years and somehow crafted a coherent story from our crazy and often incoherent way of carrying on.

4) Movie poster

His latest film ‘How to change the world’ tells the story of the founders of Greenpeace and on the opening night he’s also got Vivienne Westwood on the panel for the Q&A – looking forward to that.

Jerry came in to our lives by chance, he’d been commissioned by the Cambridge User Parliament to make a film about disability rights and advocacy (‘Real Power’) and it was felt that whilst this was an obviously worthwhile subject it could also be seen as a little dry and needed an extra element to lighten the mood – cue Heavy Load! Through that experience we formed a friendship with Jerry and he decided to make a feature documentary about our world – something that is still find hard to believe actually happened.

“Film of the week” – Mark Kermode, BBC 5 Live

Meeting Jerry totally changed the worlds of everyone in Heavy Load and we went from playing social care garden parties and day centres to Glastonbury and Wychwood Festivals, New York City, various European cities and wrote the theme tune for Channel 4’s Cast Offs drama series.

3) Burnstock

My favourite photo summing up an early Heavy Load gig – says it all. We didn’t care how many people were there we always rocked!

On top of that our movie was premiered at SXSW, Texas and appeared at various international film festivals and was broadcast on the BBC. It also got screened on Finnish TV and I have no idea whether it had any role to play in the Pertti Kurikan Nimipäivät story, but they formed that same year (2009) and have gone on to do unbelievably brilliant things. Nearer to home we do know we inspired bands like Zombie Crash (who toured with Pertti Kurikan Nimipäivät in 2013) and with thanks to organisations like Carousel and Constant Flux there’s an learning disabled amazing music scene in our home city, Brighton and Hove.

Jerry and Heavy Load arriving in NYC

Project Fart

During the filming Jerry phoned me one day and said it could be worth considering creating some sort of organisation taking inspiration from the release of the movie ‘Children of Agape, we are together’ which created a foundation to further the work of the orphanage featured in it. We realised the Heavy Load movie would offer us a great platform for something but we’d not worked out quite what that might be – for some months the idea lived in our heads under the code name ‘Project Fart’.

Michael straightI’ve told the story before about that lightbulb moment when we decided to launch the Stay Up Late campaign, that moment when Michael (our drummer) was told to drink up by his support worker because it was time to go home. He disagreed, he still had half a pint in his glass and was in the middle of a conversation. We launched Stay Up Late later that year with several hundred leaflets and a banner at one of Carousel’s Blue Camel Club nights. We had no particular plan other than to raise awareness of the issue of people in receipt of so called ‘person centered support’ not being a able to make chaoices about simple things like what time they went to bed and how they spent their evenings.

Jerry’s movie gave us the unique position of being able to get our message out to many thousands of people all sharing our frustrations and we’ve always adopted the approach of being free and easy with our logo, figuring that it makes sense for as many people to be doing things in the name of Stay Up Late as possible. That approach has enabled us to punch way above our weight, giving the impression that we’re a much bigger organisation than we are, and in fact it was only in 2013 that we employed our first ever paid worker. The approach of being free and easy with our logo hasn’t always worked with a small number of situations backfiring on us where other organisations have claimed our work for their own, and not really worked with us in the way we’d hoped, but it’s been risk worth taking and has largely paid off I think. (I’ll probably blog about this issue in a bit more detail in the future).

Our friends from C-Change in Glasgow

Our friends from C-Change in Glasgow

Our first employee was of course Madeline who’s now joined by Kate and Holly who make up the team running our Gig Buddies project across Sussex. To think we’d have an office with 3 staff supporting over 60 people with learning disabilities to get out to gigs regularly with their volunteer buddies is something we hadn’t even dreamed of. And what a dream team they really are backed up by our lovely board of trustees.

Gig Buddies Harry and Jeff at Southseafest

Gig Buddies Harry and Jeff at Southseafest

Now we’re just about to announce details of how we’re going to make use of £202,000 funding from the National Lottery to develop this work even further and support other organisations to set up their own Gig Buddies, just like ACL Disability Services in Sydney have done, and also Thera Scotland in Midlothian.

So in our small way Jerry’s movie ‘Heavy Load’ has helped us change the world we work in, even if at times it feels like the challenges are getting harder and harder for people with learning disabilities living in the UK right now. We’ve always known exactly what needs changing – the challenge is just exactly that ‘how to change it’.

Gig Buddies has also enabled us to widen our work to involve the local community, not just our wonderful band of volunteers and local arts organisations and support providers, but also venues and promoters (such as One Inch Badge, Music’s Not Dead, Sticky Mike’s Frog Bar and The Brighton Centre) all of who support our work in showing what a community should look like, with people at the margins welcome in the middle (or even in the mosh pit).

We also work within the wider community working with other organisations such as Attitude is Everything, Paradigm, Heart n Soul, Learning Disability Wales, Mencap and many others all striving to improve lives for people with learning disabilities. (And we were recognised as one of Nesta’s 50 New Radical organisations making a real difference in their community).

The thing that I’m not sure of, and what we really need to do, is how to connect with that potential army of support workers out there and get them thinking about how they can be part of the change we need to see, the change that people with learning disabilities are calling out for, to be able to live their lives how they want. We’ve connected with loads of people who agree with what we’re doing – but we know there’s many more who are working in systems and settings that create institutionalised practices and these are the people we really need to create debate with.

How can we create dissent amongst support workers?

They surely can’t be happy with how they have to work so we need to hold on to that hope and find ways to create dissent and provoke a response that drives positive change, delivering truly person centred support.

So we’ll be pondering this one – any suggestions gratefully received.

In the meantime I’ve got my ticket for How To Change The World, 9th Sep, Picture House Central, London and we’re also holding a screening of Heavy Load the movie at The Cowley Club, Brighton on Tuesday 18th Aug. There may be members of Heavy Load present to do the Q&A, who knows? (I’ll be there) – as ever with Heavy Load I never knew what was going to happen next, and that’s been the story so far with the running of Stay Up Late the charity.

1) Russian Load


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