Talk given at Lemos and Crane’s conference – Access to Arts, Culture and Well-being at Inmarsat Conference Centre, Old Street, London – 20th Nov ‘14

Introductions – me
I work part-time as the Involvement Manager at Southdown Housing, a not-for-profits provider of support and housing in Sussex.
I’m also doing a part-time secondment as the National Co-production adviser for Think Local Act Personal.

I did want to come and do this talk with one of our participants but we’re a very small charity and our advisory group (made up of our participants) is meeting today and busy planning for a trip we’re running to Madrid next week as part of another project.

On this talk I’m going to:
Introduce the work of our charity
Say where we came from
Explain our link with Lemos and Crane
And focus on the work of our volunteer project ‘Gig Buddies’

We’re a charity whose purpose is to promote full and active social lives for people with learning disabilities.

It may sound like what we do is a lot of fun (and it is – that’s the point) but there’s also a very profound issue at the core of what we do.

Our purpose is to change cultures.

We could easily have called ourselves ‘Choice and Personalisation – The Charity’ but we don’t think that would have the same ring to it. But that’s essentially what we’re about.

Our story began back in 1997 when me, Jim, Mick, Simon and Michael all met and decided we wanted to be in a band together. Simon, Michael and Jim all received support from Southdown Housing Association and me and Mick worked there as support workers.

Our first big break came in 1998 when we played at the Beautiful Octopus Club in Deptford, so lovely to be sharing the stage with Mark and Mark from Heart n Soul here today.

We just enjoyed playing together though and took our chaotic punk performances round to day centres and learning disability social clubs playing covers of well known songs in our own unique style.

Our next big break came when the film director Jerry Rothwell read about us in a Mencap newsletter in his doctor’s surgery. He was intrigued by what we were doing and decided to follow us round for 2 ½ years and make a feature documentary about our attempts to take our energetic live shows from the ‘disability ghetto to the mainstream’ (as Jerry puts it).

The film was a landmark moment for us and truly life changing with Mark Kermode giving it ‘Film of the week’ on BBC 5 Live and it being screened on BBC, US TV and at cinemas.
In the movie too was featured the birth of Stay Up Late as a campaign with the band becoming increasingly frustrated with fans leaving their shows just as they came on stage.
We never for once considered that this might be anything to do with the quality of our live performances and more to do with inflexible support shifts. Luckily when the film came out loads of people got in contact to say this issue of inflexible support shifts was a problem where they were too so Stay Up Late started to gain some momentum with widespread recognition of the problem.

For link to video clip:
https://www.youtube.com/watch?v=tLoIhtjA0Q0

Here’s a short scene from the movie – the launch of the band’s first album (The Queen Mother’s Dead) with band members talking about the issue and how it affected them

This is Jim - the man who started it all.
Jim lives in a registered group home run by Southdown Housing Association (www.southdownhousing.org) and used to while away his time strumming on a guitar in his room. One day his support worker asked Jim if he’d like to do anything with his love of music and Jim said he’d like to be in a band. They sent out an advert round Southdown Housing and a week later they had their first band practice. Little did they know what they’d get up to over the next 15 years.
This approach also influenced the way we do everything - ‘keeping things punk’ - having ideas and putting them in to action quickly, experimenting and failing but also triumphing too.

This is an important part of our story, listening to what someone with a learning disability wants to do and trying to make it happen. In our case we went on to achieve things beyond our wildest dreams.
(Incidentally this photo of Jim is in Times Square – another amazing part of our story).

Coupled with trying to be as user-led as possible we also struggled to say ‘No’ to anything which I think is another important factor in helping us to get as far as we have so far!

We also went on to do some other incredible things like 2 Glastonbury Festivals.

Here’s a photo of Michael enjoying some chips at Glastonbury.
This also enabled meto fulfill one of his ambitions. To say “hello Glastonbury!”
We’ve also returned to Glastonbury with our Gig Buddies project - and more of that later.

e also went on to release 3 albums which started with a largely covers based ‘The Queen Mother’s Dead’ in 2006 and moving on to flexing our song writing on ‘Shut It’ (2008) and ‘WHAM’ (2010).
The topics of songs ranged from the vaguely political (I Aint Got No DLA, and Everything is Bollocks) to appreciations of the work of George Michael, and general observations made by Simon (Farty Animals, Sexy Films). They also spoke of some of the more bizarre things we encountered on our travels (Julie’s Beard).

As more people got to hear about us more doors opened and one very exciting day we got a call from the people at Eleven Films who wanted to commission us to provide the theme tune for the Channel 4 drama series ‘Cast Offs’. The brief was ‘anarchy, noise, music you wouldn’t normally hear on the TV, you know that sort of thing…’ - well that was a pretty easy brief to follow as it only described what we could do. The producers commented that they liked our can do attitude. It’s a good job they’d only asked us to do the things we actually could do!
While we always existed on the margins of what we saw as the music industry we felt that in some way we’d become part of the cultural landscape, and to get a TV theme tune was a great achievement for us.
What was also nice was that the producers never made a big thing that people with learning disabilities had written the theme tune.

And another land mark moment for us, Craig, a punk who’d seen the film on TV and came to a few of our gigs decided to get ‘Praise The ‘Load’ tattooed on the back of his leg. We don’t think you can get much more mainstream than that!

Then in September 2012, after 15 years of anarchy and mayhem our drummer, the wonderful Michael White, decided that it was probably time to retire gracefully and we’d also been invited to play in the Paralympic Festivities in Trafalgar Square and so the stage was set for one final gig, and what a way to bow out?!
It was great to see some old faces too who’d met us through the film and on our travels, and the legacy of Stay Up Late lives on as we try to enable more people with learning disabilities to lead the lives they want to. Just like Jim did at the start of Heavy Load’s journey.

And really starting Stay Up Late as a charity was probably our single greatest achievement as it’s enabled us to help change a lot more people’s lives, which I’ll go on to now.

As mentioned before Stay Up Late started because we were fed up with seeing our audiences leave halfway through our sets. This was also a personal issue for one member of the band who was asked to drink up halfway through a pint whilst we were still basking in the success of our first ever mainstream pub gig to a packed house.
For us this is such a big issue because going out and seeing bands, meeting your friends and doing what you want is an important part of your own self-expression and personal identity. It’s where you make new friendships and relationships and make choices about the way in which you lead your life.
To be denied this right is not only socially isolating but also leads to poor physical and mental health and prevents people with learning disabilities from being the people they want to be. Whether it’s Staying Up Late or going to bed early it doesn’t really matter - as long as you are able to make that choice.
Just imagine if your own social life always ended at 9pm - or earlier! It’s devastating and plain wrong. Not only that but it’s also written in various government policies about the need to promote choice and independence for people with learning disabilities.
So we decided to do that most punk of things and start up a charity to uphold government policy!

But I’m not showing you this slide because it’s a punk – it’s because there’s two things I want to talk about.

There’s currently two main focuses to our work:

1) Campaigning
We still carry on the campaigning work that we started on

2) Gig Buddies
This is what I want to talk a bit more about today, our volunteer befriending service ‘Gig Buddies’ and the difference it’s making in Sussex

There’s also been a huge amount of interest in the recently thanks to a piece in The Guardian a couple of weeks ago which has really captured people’s imaginations with people wanting to be Gig Buddies all over the UK.

Imagine this crowd at Glastonbury is made up entirely of people with learning disabilities.

If it was half of them wouldn’t be there - and the statistics published by the Learning Disability Coalition make for sorry reading in a supposedly civilized country like the UK.

1.8M people in UK with learning disabilities
47% - spend most time at home
51% - say they feel lonely
64% - don’t see their friends


‘Company is most important factor in
reducing risk of dying’

You can either moan about things or get on with doing something about it - even if it’s only small, that’s where we came up with the idea for Gig Buddies.

Loneliness is a huge problem across many groups of people, a real blight on modern society and something we’re passionate about addressing.

The idea is very simple - we match people with learning disabilities with volunteer buddies who love the same kind of music. Buddies are vetted, trained and matched and receive ongoing support.
There’s also an advisory group made up of people with learning disabilities who oversee the running of the project.

Essentially we’re a community connecting volunteer befriending scheme but we thought ‘Gig Buddies’ was more catchy, and a lot of the focus is on music as that’s where we came from.

A couple of years ago we did some research through the Community and University Partnership Programme at Brighton University to find out what the barriers were to people with learning disabilities going out in the evening. The issues were things like:
Having support needs
Lack of money
Not having any friends
Not knowing what is on
Perceived and real community safety issues
No transport
Lack of confidence and motivation

Gig Buddies attempts to address all these things because we also found out that people really did want to go out in the evenings and be part of things.

It’s all about finding out what people have in common around shared interests.

So who here likes The Fall?
Who likes musicals?
Who likes Kylie?

Now we all know people in the room that we’ve got something in common with.

It’s all about sustainable and meaningful friendships, promoting choice with the participants taking the lead through our advisory group (The Storm and Thunder Team) and through co-facilitating volunteer training sessions.

Trying to turn the power balance upside down.

The central concept of Gig Buddies is that we’re trying to make volunteering easy by turning every day activities in to volunteering opportunities, cutting thtough as much red tape as we can on the way.
Turning something you already do in to a volunteering opportunity. It’s meant that 85% of our volunteers are new to volunteering in Sussex.

And underpins our core belief that in general most people are just nice!

It’s also about identity. There’s so many negative labels about people with learning disabilities used in the media, and in general but also in the sector we’ve come up with these de-humanising terms like ‘people with LD’ or ‘PMLD’ – we can easily start to lose sight of the person.

So let’s enable people to choose their own labels and sense of identity and wear whatever ‘t-shirt’ they want to.

Since starting in March 2013 we’ve now got over 50 volunteers and have enabled people to get to over 360 gigs and events.

Some of these have also been festivals such as Glastonbury and Latitude.

And it’s not just about gigs – can be whatever your chosen ‘gig’ is – going to church, playing sport, going for nature walks, whatever.

As much as Stau Up Late isn’t about set bed times, so Gig Buddies isn’t just about gigs. It’s about choice.

It’s also about being social and another aspect is our regular social meet-ups when buddies meet up in a pub and share experiences.

Next steps for the project is we want to share it with other groups so they can run their own Gig Buddies projects but there are significant issues we need to work out with this.

We can’t just share it without considering how to maintain the integrity and quality of the project and so now we’re thrown in to the world of looking at social franchising models and working out how best to do this.

The first step of this new phase of our work is to set up pilot projects, one in Sydney and one in Edinburgh with a couple of partners and reflect on our learning from that, and then hopefully start rolling out to other groups next year.

We were also recently thrilled to be included in NESTA and The Observer’s list of 50 ‘new radicals’ people and organisations – changing communities in the UK.

We often get asked why there aren’t more events for people with learning disabilities. However, our belief is that all activities are for people with learning disabilities.

I also recently had an email from someone asking why we only seemed to do things in the south east, and wanted more activity in the north east. The answer is simple, we live in the south east and want to encourage more people to take action and do things for themselves.

We’re a tiny little charity with 2 part-time staff but we’re having a big impact. Just imagine what could happen if more people got active.

So we’re happy to share how we do things – and I don’t think we’re that radical really, we just do stuff!

As we’ve been listening to all the speakers today there’s been some common themes.
We’ve heard lots about relationships, being active in your community, having a sense of identity and beliefs. Also about building community capacity and challenging and changing cultures.
As a charity we know there’s things we can do better, we strive to be much more user-led and are working on our capacity to do this.
And that’s a theme I’d like to end on – challenging ourselves.
Last time I was here it was the Loneliness and Cruelty conference and we’d heard some harrowing and awful stories about institutional abuse experienced by people with learning disabilities.
My challenge that day was to try and send everyone home feeling upbeat and actually I said I wanted to send everyone home feeling angry that this stuff is still happening.
Today I don’t want to make you angry but I’d like to make you passionate. What we need to do is change the power balance so people with learning disabilities are much more in control of their own lives, and we all have the power to give our power away.
So let’s make stuff happen!