Pacific Rim International conference on disability

Here’s why I was presenting Gig Buddies at the Pacific Rim International conference on disability and diversity.

Aloha – I’m in Hawaii! Last year I saw a call-out from the Pacific Rim International conference on disability and diversity looking for content from organisations seeking to answer the question:

How do we innovate to bring more people from the margins of society into the centre where they can live to their full potential? Especially in light of the pressures of funding cuts and austerity.

I thought that sounded right up our street and submitted a proposal that would use the work we’ve done over the past 3 years with Gig Buddies to answer this very question. The key learning outcomes I wanted to focus on are:

  1. Enabling delegates to think about ways in which they could apply our work to their setting
  2. How we can view everyone we work with as an asset and through co-production we can create a deliver projects that have a real impact on health and well-being but can also be a huge amount of fun too.
  3. The centre can be a scary place for some people (and the thought of being there) – so I’ll talk about the safeguards we’ve put in place to ensure we manage risks effectively.
  4. The importance of developing good relationships and how to support volunteers well in doing this.

So long blog post coming up with the content of my talk. I’ll write an update after I’ve given it to let you know how I got on, whether anyone turned up, and what (if anything) came out of it…

Gig Buddies

Pacific Rim international conference on disability

www.gigbuddies.org.uk

a project run by the charity www.stayuplate.org

Gig Buddies is a project that enables people with learning disabilities and autism to be active in their communities and build friendships through shared interests.

Language – throughout this talk I’ll use the term ‘learning disability’ – that’s what we currently use in our work in the UK.

Gig – is what we refer to as a live music event.

This presentation gives an overview of how Gig Buddies works, how we work as a charity and how we’re looking for partners to work with to share and grow our work.

Pacific Rim international conference on disability

About me

My name is Paul and I’m the Director of Stay Up Late, the charity that started the Gig Buddies project.

I’ve worked in social care for over 20 years, I started as a support worker and then became the manager of a group home for four adults with profound and multiple learning disabilities.

I have worked for a not-for-profits support provider as the Involvement Manager for 10 years and recently worked for Think Local Act Personal, as the Co-Production Adviser.

This was a national role for an organization supporting the personalisation of health and social care in the UK.

Pacific Rim international conference on disability

Imagine if …

you had to leave every night out at half past nine?

We know that going out and having an active social life is so important – it’s where you watch your favourite bands, meet your friends and feel connected.

Sadly for many people with learning disabilities the evening finishes around 9pm (if you’re lucky) due to staff working inflexible support shifts.

This is what drives our work as a charity.

Pacific Rim international conference on disability

This is where we work

We’re based in Brighton on the south coast of England, about 1 hour from London (by train).

We work across the county of Sussex which is run by 3 local government areas. (West Sussex, East Sussex and Brighton and Hove).

That’s the pink shaded bit.

Here’s some photos of where we work.

Pacific Rim international conference on disability

Sunset in Brighton by Joao Paulo Fernandes

Pacific Rim international conference on disability

Brighton Pavilion by Tomas Maltby

Pacific Rim international conference on disability

Hove seafront looking east by ephemerol

Pacific Rim international conference on disability

Untitled by Mike Hellers

Pacific Rim international conference on disability

The Seven Sisters, Sussex, England, UK by weesam2010
Pacific Rim international conference on disability
Brighton Pride 2009 – 157 by Tom Coady

Brighton and Hove is a city of around 250,000 people but has 8 million visitors a year.

It’s a fun lively place with loads to do in the evening. There’s lovely countryside nearby too.

It’s also a very diverse and welcoming city.

Pacific Rim international conference on disability

How our charity started

Our story began with the punk band Heavy Load. (I was the bass player).

3 of the band members had learning disabilities and we all met because through Southdown Housing Association, where we worked and lived.

We started in 1997 and finished in 2012. In 2008 a feature length documentary was released about us, also called ‘Heavy Load’, and was broadcast on US and UK TV.

Pacific Rim international conference on disability

We played all over the UK, and also played in the US and Europe.

We released 3 albums, played at Glastonbury Festival twice and even wrote a theme tune for a Channel 4 drama series (Cast Offs).

As we toured we always got tired of seeing our fans being told to leave at 9pm because their support workers couldn’t work late. This made us angry so we started the Stay Up Late campaign.

In 2011 we decided that we should become a charity so we could support more people to Stay Up Late and change the way people work in social care so people with learning disabilities can be in charge of making decisions about how they lead their lives.

Because we were a punk band we still try to keep the spirit of punk in all our work. Which means just getting on and doing things.

#KeepItPunk !! (that’s my catchphrase)

Pacific Rim international conference on disability

As a charity there are two main things that we do…

Pacific Rim international conference on disability

  1. Campaigning
  1. Gig Buddies – and that’s what I’m going to talk more about

Pacific Rim international conference on disability

Our underlying approach:

This is an exercise we do on our volunteer training.

We ask everyone to draw circles and fill them with people they know in their own life who fall in to these groups.

Circle 1 = Family, partner and the people they’re closest to, people they cannot imagine life without (can include God for people of faith.)

Circle 2 = Close friends and good mates. The people you’d go to if there was a crisis.

Circle 3 = People you have a relationship with because you do something together and share an interest.

Circle 4 – People in your life because they are paid to be there; child-minders, hairdressers, doctor.

There may be some ‘shadowy’ people beyond circle 4 – these are people you know because you see them in the street but don’t know their name.

It creates a ‘colourful’ picture of someone’s life.

Pacific Rim international conference on disability

We then ask the group to do something quite upsetting.

We ask them to cross out circles 2 and 3.

We then ask them to talk about how this feels.

The only places people can express themselves are through the circles 1, 4 or the shadowy people beyond circle 4.

Can’t just drop into circle 1 or 2 – but you can drop into circle 3.

This is what life is like for a lot of people with learning disabilities. It’s not so colourful!

A good support worker will be enabling somebody to fill up their circles already.

Not all people with learning disabilities are socially isolated, some will already have a strong social network. But people are more at risk of being socially isolated.

This exercise is to reinforce the importance of their role as a Gig Buddy.

You can’t pay for friends – this is really important to remember.

Pacific Rim international conference on disability

This slide is a dense use of words that describes exactly what Gig Buddies is about.

  • It’s about volunteer befriending
  • It builds community capacity
  • We take an assets based approach to our work
  • We seek to promote positive physical and mental well-being

But probably makes no sense to people who aren’t social care professionals.

(are you all still awake?)

Pacific Rim international conference on disability

If we used this kind of language to explain the project we’d have difficulty recruiting people to be involved. They just wouldn’t understand what we were talking about.

The same goes for volunteers – we’d find it really hard to explain what we do them too.

Instead our message is accessible to everyone. Essentially we need nice people who like the same kind of music.

Pacific Rim international conference on disability

We meet everyone we work with; participants and volunteers.

We match people based on their musical and cultural tastes.

We also consider things like: sex, sexuality, gender, age and where they live. (For example people living rurally will need a volunteer who drives).

Remembering always that its about putting the power in the hands of the participants.

Pacific Rim international conference on disability

When we started Gig Buddies we thought there were 3 reasons why people don’t volunteer:

  1. They don’t know what to do
  2. They don’t have the time
  3. They really don’t want to

Gig Buddies aims to make it easier to volunteer because you’re doing something you already enjoy doing – going to gigs!

We ask volunteers to complete a short application form, and interview them.

We conduct criminal record checks on them (a legal requirement) and take up references.

We ask all volunteers to attend a day’s training and provide supervision meetings to discuss any issues they need support with.

We ask them to commit to at least 2 ‘gigs’ per month (about 6 hours).

We do things properly to make sure people are safe but we also try to cut through as much of the ‘red tape’ as possible.

We meet everyone we work with; participants and volunteers.

We match people based on their musical and cultural tastes.

We also consider things like: sex, sexuality, gender, age and where they live. (For example people living rurally will need a volunteer who drives).

Remembering always that its about putting the power in the hands of the participants.

Pacific Rim international conference on disability

You can call them Al by NMK Photography

Loneliness in the UK

This is a picture of the crowd at Glastonbury Festival.

Imagine if that crowd were made up of people with learning disabilities.

Pacific Rim international conference on disability

You can call them Al by NMK Photography

If it was about half of them wouldn’t be there.

This is just about not being able to ‘Stay Up Late’ – it’s about being able to get out at all!

These statistics came from the Learning Disability Coalition who surveyed people with learning disabilities, and their families, to find out about the impact of government funding cuts. (That was in 2010 and we’ve seen lots more cuts since then):

  • 47% of people said they spent most time at home.
  • 51% said they feel lonely.
  • 64% said they don’t see their friends.

There are 1.4 million people with a learning disability in the UK.

There are 6.5 million people in the US and around 200 million worldwide.

Our recent survey suggested that up to 72% of people with learning disabilities can’t get out in the evening.Pacific Rim international conference on disability

Bon Big Breakfast by bob walker

Pacific Rim international conference on disability

Ashtray by Thomas

Studies have shown that loneliness and social isolation are a bigger killer than obesity.

And a lifetime of smoking 15 cigarettes a day.

Pacific Rim international conference on disability

His24-Mother Teresa by Ludie Cochrane

Mother Teresa summed it up with her quote:

“The most terrible poverty is loneliness, and the feeling of being unloved”

Pacific Rim international conference on disability

Before we started Gig Buddies we did some research through Brighton University. We wanted to find out what was getting in the way of people with learning disabilities going out in the evening. These were:

  • They need support
  • They’re worried about keeping safe
  • Not having the confidence or motivation
  • Not having anyone to go with
  • No knowing what’s going on locally
  • Needing support with transport

We also found that people had an absolute desire to go out and be active in the evenings.

Pacific Rim international conference on disability

Metal Brotherhood by Alessandro Amodio

Gig Buddies is also about enabling people with learning disabilities to choose their own labels and identify with people who like the same things.

Not being labelled because of their diagnosis.

That’s got to be a more positive thing.

Pacific Rim international conference on disability

There’s also a strong social aspect.

We have regular social meet-ups in pubs and restaurants where buddies chat about what they’ve been up to.

It’s about building a community and letting the wider community know what we’re doing – so they can get involved too.

Pacific Rim international conference on disability

The Flaming Lips @ The Palace Theatre by remixyourface

Gigs are great if you love loud music, crowds, and flashing lights.

What if you don’t?

The important thing about Gig Buddies is that we find out what peoples’ ‘Gig’ is – that could be going to theatres, museums, church, sports matches – anything.

It’s about enabling people to do what they want, and share that experience with somebody else who also enjoys it.

Pacific Rim international conference on disability

The project is overseen by The Storm and Thunder Team.

They meet every month and talk about the project and help us plan how to develop it.

Members also come to trustees meetings, one (Dan) is a trustee and work in the office.

They also take a leading role in running our Annual General Meetings.

Pacific Rim international conference on disability

Pacific Rim international conference on disability

Some facts and figures about our work so far:

  • We have over 70 pairs of buddies
  • They’ve been to over 700 gigs and events
  • Including 11 festivals (and more planned this year)
  • We found that 66% of volunteers didn’t have a friend with a learning disability before.
  • We’ve supported organisations in Australia and Scotland to set up their own Gig Buddies projects.

We published this evaluation report with our findings so far, including some short case studies.

You can download the full evaluation here

Recently we celebrated 3 years of Gig Buddies.

This is our party in a local bar where we chatted, danced, drank beer and ate pizza.

We don’t organise many events of our own though.

We believe that all events should be for people with learning disabilities.

Pacific Rim international conference on disability

Drumkit by The Missing Sticks

Recruiting volunteers

Like I said earlier – Gig Buddies does lots of important things to support peoples’ physical and mental health but it’s also really easy for people to get what it’s about too.

Pacific Rim international conference on disability

Drumkit by The Missing Sticks

We recruit volunteers from a variety of places:

  1. Our events and stands – 15%
  2. Social Media – 6%
  3. Adverts and magazines – 13%
  4. Pubs and venues – 17%
  5. Friends and volunteers – 21%
  6. Online – 11%
  7. Through other support organizations – 17%

A whole range of different places

Pacific Rim international conference on disability

Our plans for Gig Buddies

We’re supporting more and more people in the county of Sussex but we’ve got much bigger plans. We’re a tiny charity, and there’s only so much we can do.

And Gig Buddies is all about building relationships.

So we’re inviting other organisations to work with us to run Gig Buddies where they are.

Pacific Rim international conference on disability

This is a map of the UK showing the places where we’re hoping to support other organisations to launch Gig Buddies where they live.

If that works we’ll have supported another 600+ people with learning disabilities to be active in their communities.

Pacific Rim international conference on disability

We also want to work with other organisations in other countries to get Gig Buddies going in lots more places.

The project will look different in every place due to local issues facing people with learning disabilities and also the local music scene. But there are some things which we say can’t be changed about Gig Buddies:

  1. It’s about people with learning disabilities being able to choose how they live their lives.
  2. It’s about meaningful activities in the community.
  3. It’s about developing informal support networks.
  4. It’s about friendships. We are not providing free support – it’s something totally different.

Here’s a ‘Heat Map’ of the USA showing how far you are from a McDonalds restaurant.

Pacific Rim international conference on disability

McDistance from a McDonalds, created by Stephen Von Worley at datapointed.net by Duncan Hull

And I started this talk by asking you to ‘Imagine if…’

Imagine if instead this was a map of what Gig Buddies and projects like it instead.

Imagine what impact that would have on people with learning disabilities and their families.

But imagine if too what sort of positive impact it would have on communities in general as more and more people with learning disabilities would be seen as humans with interests. Not clinical diagnoses. (Which generally aren’t relevant when you’re in the mosh pit at a punk gig).

Pacific Rim international conference on disability

Thank you and please connect through Twitter and email.

Would love to continue discussions about how we can get grow Gig Buddies as a social movement.

Paul Richards – Director

Twitter – www.twitter.com/heavy_load

Email – paul@stayuplate.org

“Fight for your right to party!”

Other ways to view this presentation

Slideshare

[slideshare id=61039728&doc=pacrimpresentationv3-160418112149]

To get a copy of the handouts in RTF format please email us and we’ll send via www.wetransfer.com (472mb file).
Download a Word Doc of the hand-outs here

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