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Stay Up Late

Podcast Episode 68 One of the best things about becoming an adult is that no one can tell you what to do, when to do it and what time to be home. However, that’s not always the case for young people with additional needs. Often they still have rules in place that don’t apply to their peers. Stay Up Late is all about changing that and making it easy for anyone to stay up late, stay out late and enjoy the social lives they want on their terms.

Paul Richards the founder of Stay Up Late explains where the idea came from when he saw first-hand what happens when people are not able to have choose how they spend their evenings.Kate Ogden the manager of Gig Buddies which buddies people up so they can go to gigs in a safe and supportive way discusses how gig buddies works, how they make sure people are safe and how they are expanding the model around the world though a franchise model.

Stay Up Late is such a simple idea but one that does so much more than what it says it does, it promotes integration, acceptance and provides people with additional needs a solid base upon which they can start to build a social life of their choice.

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Podcast Transcript
DEBRA: Welcome to Episode 68 of the Journey Skills podcast. Often these podcast interviews are about serious issues, not this one. Well, there are some serious parts but essentially this is all about having fun. This is all about how we can help our young people with additional needs have more fun and do what their friends do, which is stay up late.I’m talking to Paul Richards, the founder of Stay Up Late and Kate Ogden, manager of Gig Buddies. And as you hear, it was a pretty fun interview because there’s some great stories in here. And it should be fun because this is all about our young people getting out and enjoying themselves.

What is Stay Up Late? Well, it doesn’t need that much explaining. They’re an organisation that support people through the Gig Buddies program to access a variety of social activities that most people take for granted. It enables people to widen their taste of music, enables people to develop their social skills and it enables people to refine their social scripts.

It’s also about integration for the person who has additional needs, for the buddies that they go to the gigs with, and in fact, as Paul and Kate explained, for everyone that’s actually in that venue. And that if you like as the serious part of our chat where Paul talks about why he believes that we should be focused on integration, not segregation when it comes to how young people with additional needs enjoy their social lives. They do say music brings people together and in a sense, that’s what Stay Up Late is doing.

DEBRA: Today I am talking to Paul Richards who’s the Director of Stay Up Late and Kate Ogden who is the project manager of Gig Buddies. Welcome.

BOTH: Hello.

DEBRA: So, Paul can you tell me a little bit about Stay Up Late, how it got started?

PAUL: Stay Up Late got started when I was the bass player in a punk band and three of the members of the band have learning disabilities. We were called Heavy Load and we started in the mid nineties. We used to play a lot of disability club nights, up and down the country and at nine o’clock, often before we even got on stage, half the audience would leave and that wasn’t because of our highly chaotic performances (which were an acquired taste it must be said). We always thought it was to do with the fundamental problem with the way that social care was organized and people couldn’t stay up late and we were right. That was what was going on.

So, what happened was in the early 2000s, a film company got in touch with us and followed us around for a couple of years, made a film about us. And one of the stories in the films was about how we were getting more and more fed up with seeing people leaving nights out early just because support was inflexible. And so that was a story in the film and the film came out, it was on the BBC, it was in cinemas, it was on TV in the US, International Film Festivals and so we got out this to a wide audience of people who all agreed with what we were calling for. Because the issue isn’t about how late you stay up late, it’s about having a choice over how you live your life.

So the band ceased to exist in 2012 after 15 years of anarchy and mayhem. Our last gig was in Trafalgar Square, as part of the Paralympics and not a bad way to bow out So we created the charity because I knew the band couldn’t carry on forever and I felt like we’d started a really important conversation and to me, it felt irresponsible to just stop things.I wanted to be a part of trying to do something about it and literally the week after our last gig, I got a letter from the City Council in Brighton and Hove saying that we got funding approved to start our Gig Buddies Project and that led to us employing Kate and the team of people who now support the work.

We do two main things, one is campaigning against inflexible systems that restrict people from living the lives that they want and the sort of institutional practices that happen where adults are told what time to go to bed, when to go out, what to do, go out in groups. Then the other thing is Gig Buddies being our sort of practical response to it by also saying people with learning disabilities have every right and probably want to do all of the things that lots of other people regularly do anyway; going out and seeing great music, going to clubs, going to pubs, doing those sort of mainstream stuff in a non-segregated way and that’s what Gig Buddies does.

DEBRA: Gig Buddies how does it work?

KATE: So, Gig Buddies matches volunteer with somebody with a learning disability to go to gigs together once or twice a month. We match people usually based on a shared interest in music, but occasionally it’s other hobbies as well. The main thing is that they’re both choosing to do something that they enjoy together and it’s fun for both people.

The idea being there is if there’s somebody with a learning disability who wants to go out late, go clubbing, it’s not the barrier of a staff member saying “I have to finish at this time”, the volunteer will say “I’m up for that and we will stay as late as you want to”. So that’s a simple answer to how Gig Buddies works.

DEBRA: How do you find the volunteers?

KATE: Lots of different ways but often it’s word of mouth. So, if somebody’s volunteering for us and they tell their friends, they say that it’s a great, fun thing to do, it’s an easy way to volunteer and lots of people do it because they know someone who has done it. We also have quite a lot of volunteers that understand the barriers because they might have a sibling with a learning disability or they’ve grown up with relatives with learning disabilities so they believe in this social campaigning side of things and they want to help. Sometimes people see a poster at a gig. There are lots of different ways. Social media is a really important way for us to recruit people.

PAUL: We’ve got a couple of people who run venues as well, haven’t we?

KATE: Yeah, that’s true. So people that have seen Gig Buddies come into their venue and so thye promote us tand join as volunteers as well.

DEBRA: So you mentioned a little bit about social care, do most people come through that system so they’re not necessarily living with their parents?

KATE: It’s mixed, actually. Most people are living in supported homes but we also have people that are still living at home with their parents and their parents will refer their son or daughter who’s over 18 as well.

DEBRA: When volunteers get together with the young person with additional needs, is it just about going to a gig or do friendships develop outside that?

KATE: It’s not just about the one-to-one relationship although its really key they build up a good rapport together and have fun going out. But with the volunteers, we ask them to help their gig buddy to make friends outside of that one-to-one relationship. Partly because there’s no guarantee that the volunteer will stick around long-term. We ask for volunteers to be a buddy for at least a year. We’ve got some amazing pairs of gig buddies that are still together five years after they started. But obviously, life changes people move or they have different life commitments and if the volunteer leaves, we found it’s much more successful if their buddies are part of the wider community through going to gig buddies’ socials or making friends with other gig buddies. So the way that we do that is we have monthly socials in different towns across Sussex. We encourage the volunteers to bring their gig buddies to these in the hope that they’ll eventually come to those independently, make other friends and be able to go out not just not with their gig buddy but with other people who are part of our project.

DEBRA: Is it about developing social skills transitioning from having that one gig buddy into making your own friends, going out with other people, not necessarily your gig buddy.

PAUL: Yes, being confident about going into new places and chatting with people. I always say if you went into a busy pub in the UK and you had come from another country, never been here before, you would sit down at a table and you would be there for about two and a half hours thinking the table service in this place is awful. There are no written rules about how any of this stuff works and I think a lot of people with learning disabilities, they don’t know always what the rules are about; how you go in and queue up and try and attract someone’s attention, make eye contact. All of those little nuances about just what goes on in our communities.

So it’s about equipping people with those skills by enabling them to go out with somebody else who does know how it works and they can navigate it together and learn. Whilst it’s called Gig Buddies, like Kate said, it’s not about gigs at all, it’s that shared interests, it’s the hook on which to hopefully support people to do much wider things, both within the project and without it.

And I think, there are lots of nights for people with learning disabilities and they’re really well-intentioned and well-meaning and many of them are great but if you love hardcore punk or drum and bass, are you going to get that, is there going to be booze (alcohol) there and are there going to be other people without disabilities there? Those kinds of nights are a well-meaning, well-intentioned form of segregation but with support and planning, people can go out and go out clubbing and go to music festivals and these things aren’t as dangerous as people make out if you prepare and plan for it.

And then it’s about people saying “What do you want to do with your life?” and try to enable that to happen rather than telling somebody while you have a learning disability, therefore, you must go to this disco, this is for you.

The more I think about that sort of thing is that perhaps we need to communicate and educate in the wider community of a message which is a bit more around, get over yourself a bit, be more accepting and understand that if somebody makes a loud noise in the supermarket then they can’t help that, that’s just how they are.

DEBRA: Have you had examples of where you’re seeing people change their opinions in the wider community?

KATE: One of the things that have come out of the Gig Buddies project particularly in Brighton and Hove is venues changing the way that they approach customers with disabilities. So for example, we had a pair of gig buddies at one of the big venues in Brighton, watching a pop gig, it was loud, there was dancing downstairs, people were stood up and taking photos. And one of the gig buddies in the upstair seats stood up to have a dance and take a photo and was asked by the steward to  sit down and stop taking photos. A member of the public saw the volunteer in the Gig Buddies t-shirt and complained and said, “Why was that man asked to sit down? There was no signs up saying you’re not allowed to take photos, you’re not allowed to dance. It’s a pop concert.”

And the venue got back in touch with us and apologized and said, “What can we do to be more inclusive?” So, it ended up being a bit of work with them about training their staff and making it clearer to people. So, is there an area that people can sit? But if they want to stand, they can or if they want to take photos and dance, they can. It’s just making it clearer to people because if there’s no explanation people don’t know what the rules are.

PAUL: These rules that aren’t always written down, or if they are written down they’re not very accessible.

DEBRA: Can we talk about the all-important funding and how that works?

PAUL: At the moment we’re funded solely really through grants and also we get some funding from Brighton and Hove City Council and West Sussex County Council, and then a few small grants and donations from trusts. It’s an ongoing hamster wheel kind of situation of keep applying for funding and we’re looking at new ways at the moment of trying to broaden that out and see if there are any companies and people that would buy into what we’re doing and help us out.

I guess it’s a fairly young and small charity. We can’t compete with some of the massive charities but we work hard at it. And at the moment, we’re doing okay. We employ 13 people, many of those are part-time but 5 have a learning disability as well. So, we really try to use that money in a way that is living out, what our vision is of how the world should be.

Another smaller project that we do is a team of people with learning disabilities does quality reviews for a local support provider. They used to do those in-house but now, we run it for them. What we’ve found in doing that sort of work is the quality of answers that you get back from people when a question is asked by a peer is completely different if the support work or managers were to ask that question. It’s completely different. It has so much more value to it because of that.

DEBRA: I want to ask is how someone might replicate this, but one of the issues that I think that parents would have, is the security risk when you have volunteers and you have young people who are sometimes a bit more vulnerable. How do you guys manage that?

KATE: So, we actually started Gig Buddies in a box, which is a franchise so other people have started gig buddies around the country and actually in Australia as well. We’ve got Gig Buddies Sydney which was the first pilot project. And that all came out of Paul talking at a disability conference and a woman who works for a disability organisation in Australia thinking “I want to do that”. And I guess, similar to your question really, we want to make sure that the ethos and the values are kept the same and that we don’t lose the quality of what we’re trying to achieve. We’d much rather that we consult people and train them properly to be able to start it. So, we charge a license fee for other people to use the Gig Buddies trademark. But it’s not something we ever expected to do because it’s such a simple idea who I thought “Well, other people must be doing this.” It’s kind of an obvious solution to the problem but maybe it was called different things, but actually, we found out no one else was doing something quite like this.

When we offer it to other organisations to run Gig Buddies in their town or their area, we try and go through all the things like how to do it, risk assessment for individuals that’s kind of dynamic, and making sure that volunteers are DBS checked, we get references from people, we train all the volunteers, ourselves. So we interview them and it’s a kind of a long process to make sure we get the right people.

And that seems to work really well so far. We got hundreds of pairs of Gig Buddies going out in Sussex and then we’ve got 12 other Gig Buddies organizations around the UK and another one about to start in Scotland. So, it seems to be working quite well.

PAUL: We insist that it’s part of the volunteer training, that safeguarding is covered. And also, actually, what our experience shows is the process of safeguarding does more. We originally thought it’s to protect people when they’re going out, so they’re going out to a late night club and it’s led to people drinking and stuff like that, that could be a potentially hazardous situation. So it’s about making sure that people are equipped with emergency phone numbers and have thought about what issues might be.

But what we’ve also found is that it keeps people safer because we’ve had volunteers come back and say, “I’m worried about my buddy, they’ve been getting weird texts” “I didn’t like the way the support workers spoke to when they got home” and things like that. It’s enabled us to go back either to that setting or even to social services and flag up issues. So it’s actually created another layer of safety in people’s lives rather than put them at more risks. I do think Kate, you’re a bit of an expert at planning for risks, we’ve done 7 Glastonbury festivals now, and we’ve still not lost anyone. (laughs)

Glastonbury it’s colossal and there is so much that could go wrong but you can’t plan for every eventuality. It’s about having that mindset of make this happen and let’s think about how we can make sure that this is a great experience for someone. Because it would be very easy to just turn it round the other way around and say, “There are lots of things that could go wrong so let’s not do it.” You know and I think that generally seems to be the default situation sadly for a lot of people.

DEBRA: I would suspect that’s the first thing parents go is “I’m not sure that will be safe for them to do that”, so that must be a little bit of a barrier that comes when young people approach you.

KATE: Occasionally but actually most of the time, parents are really keen for their grownup child, their son or daughter to be part of Gig Buddies. Lots of parents are really keen to see their young person go out and have fun and experience all the things. Most people are really positive and if they are anxious, then we work with them to find out why they’re anxious and how we can help them overcome those anxieties. For example, one of the people that we took to Glastonbury this summer, we just had one-to-one meetings with her and her mom and talked through all the possible situations and her mom said, “I felt really reassured and not worried at all” and that she was really excited for her on her behalf to be able to have an experience of a lifetime.

So it’s just about having good communication with people and talking things through.

PAUL: We’ve had that in the past, haven’t we? Looking at Glastonbury as an example where parents who have expressed a fair degree of anxiety about what could happen. We’ve listened and we’ve worked through those as well. I think when we first started the project, I was also mindful of that. We were a new project without any track record and so parents would quite rightly say, “Who are those people?” So we worked with some people we did know, parents that we did know and who trusted us and knew our backgrounds and used that to start building that foundation and also being really clear and transparent with people about the steps that we do take.

DEBRA: Not everyone’s going to have access to Gig Buddies, hopefully soon it’s gonna be worldwide in every town, and clearly you’ve got the model for that, but what could parents do to help their young person as an adult, what kind of things would you recommend?

PAUL: If you’ve got like a network of friendships or something like that. And also, thinking about perhaps going out and starting off with things that aren’t going to be really challenging and create loads of anxiety so if someone’s never been to a gig before, you know, maybe don’t go to the local arena where there are 10,000 people screaming their heads off and crowds surfing. Maybe go and do something like go to the pub or something like that. Maybe just try stuff out as well, you know, reflect on what people do and don’t seem to like. So when we typically ask people what they’re into, as one of the first questions we ask people, it’s generally X factor. But that’s what people watch on a TV, listen to on the radio and it’s on Youtube and all of that sort of stuff.

And I see our role is about to try to widen people’s perspectives as well and going down the town to local pubs and see what other sorts of music they do or don’t like or other things they can try. So I would say, you know, ideally, if you can hook them up with somebody who would be happy to go out with them, just go and do buy up the small things and see how they go and just get a bit more adventurous.

DEBRA: Thank you very much.

PAUL: Thank you.

KATE: Thank you so much.

DEBRA: Key takeaway? It’s the simplest ideas that can have the biggest impact. This is on the face of it, a very simple idea but when we think about it, it could change young people’s lives in so many ways. And also, I think to change other people’s lives around them.

Resources
Stay Up Late
Gig Buddies
Gig Buddies Projects in the UK
Gig Buddies Sydney

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Right In The Centre


I spend a lot of time thinking about how I can make sure my daughter has a happy life long after I’m gone. I can put in place a lot for her, like income and help her build the skills and resources she will need, but her happiness long term will depend not on me but on the people around her. The right kind of friends, the right people keeping an eye out for her. She has a sister, but it doesn’t seem fair to say to her sister she is your responsibility. Of course, she would take the responsibility willingly, but my youngest wouldn’t actually want to feel that her older sister was her guardian. The solution I think is community.

How to build community? You can only build community if you are part of it. What brought on these thoughts? Well, as always, the podcast gets me thinking and the latest was an interview with Clive Harris at The Shed. He talked about not wanting to provide a day care centre but rather provide a space where people came together and through meeting each other changed their perceptions about each other. When it came to finding a location for The Shed it was a case of the location needing to be in the centre of the community, in this case on the main street. As he said people often have a set perception of what a young person with additional needs is and can be. People too often underestimate them and their capabilities. By seeing people every day in their ordinary lives then preconceptions change, and understanding can grow.

If you’re not familiar with the daycare centre model, people with additional needs are provided with daily activities in a protected space. Nothing wrong with that I hear you say; of course, there isn’t, and for some people, this is what they want. But often this is a standard response for everyone and it simply isn’t a case of one size fits all approach when it comes to people. If you listen to the Journey Skills podcasts you will know 40 episodes in there are many organisations out there stretching people and challenging perceptions.

What a lot of these have in common is they are in the middle of the community, not separate. I don’t believe my daughter will believe she is living independently if she is not able to engage with her local community and feel part of something. That’s not independence. Familiarity breeds understanding. I would be lying if I didn’t say that meeting people I don’t understand scares me. It’s the unfamiliar. I think many people are like that when it comes to additional needs. Their views are often based on stereotyped ideas. We all need to talk to the person first not a label. So, places like The Shed, right in the centre of the community, daily challenging perceptions are helping to create a better future for every young person with additional needs.