Author Archives: Grace Rojo

Seeing Below The Surface

Podcast Episode 69 Accepting ourselves by embracing our strengths and understanding our weaknesses is key to our own happiness. How to do this is the theme of this episode with Alis Rowe founder of The Curly Hair Project.

Alis talks about her own journey from when she was diagnosed in her early twenties with Asperger syndrome. She explains why she created The Curly Hair Project, what is does, and how it aims to help people on the autism spectrum and their families. Alis also shares some practical ideas that she has implemented to enable her to navigate difficult situations and live the life she wants. Some of the ideas are simple, and could apply to any young person with additional needs, but they make a massive day to day difference to someone’s life once they start using them.

Alis also advocates the importance of putting yourself first and making decisions around what is best for you, not others. She acknowledges this won’t always be the easiest option because it requires you to sometimes be very honest with those around you and often with yourself.

Finally, Alis reminds us to be ourselves because, as she says, “Where the magic happens in life is where you embrace the natural strengths and interests that a person has.” We could all do with a little more magic in our lives and listening to Alis should serve as a reminder to all of us that we are so much more than what the world sees on the surface.

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Podcast Transcript
DEBRA: Welcome to Episode 69 of the Journey Skills podcast. Although my focus is often around talking to people who provide solutions or resources in three areas that Journey Skills focuses on which is work, relationships, and daily living, the other part of Journey Skills is very much about sharing stories. When I started these were mainly from parents’ point of view because you always start with what you know, but recently, I’ve been really fortunate to be able to speak to people who have additional needs and see these as an asset and something that they can work with, and that’s a positive message that I definitely want to share with my own daughter.

As a parent, I find this actually as much of a help as finding yet another amazing employer or volunteer organization really helping to change the lives of people because I hope that one day, my daughter will come to see her additional need as an asset and part of what makes her an amazing human being.

So this week, I’m talking to Alis Rowe, the founder of the Curly Hair Project. I’ll let Alis tell her own story but for me personally, this was about talking to someone who shares her story to inspire other people and talking to someone who’s living the kind of life we all want, regardless of any needs; a life of purpose.

The other thing I got from our discussion was the value of tools and sometimes how it’s the very simple things like a To-do list that can really help a young person manage their lives. So Alis shares some very practical solutions as well, but really why this podcast is worth a listen I believe is to hear Alis talk about how to get rid of the things that don’t matter in life.

So the podcast isn’t just a story but it also offers proven solutions that have worked for her and may work for your young person. This is a podcast I’ll ask my daughter to listen to because I think it will resonate with her and I hope it will resonate with you as well.

DEBRA: Today I am talking to Alis Rowe from the Curly Hair Project. Welcome, Alis.

ALIS: Thank you very much.

DEBRA: Can you tell me a little bit about the Curly Hair Project and how it got started?

ALIS: So the Curly Hair Project is a social enterprise that supports people on the autistic spectrum, their families and professionals; so teachers and doctors and anyone working with autistic people. I started it just after I was diagnosed with Asperger’s syndrome in my early 20s because I couldn’t really find many resources in particular for adult women so I created my own. And it was sort of like a way to teach myself about autism but it happened to teach a lot of other people as well. It just grew from there really. So, I’ve written a lot of books; my autobiography is really, really popular. And I’ve written about 25 books and make films and now I’m making rap songs. And it’s just really grown over the last few years.

DEBRA: What’s the main purpose of the Curly Hair Project?

ALIS: Just to educate people, really. I think a lot less now that it’s directly for autistic people, everyone tells me that my work can benefit everyone. It can just make you a more insightful and empathetic person and I really focus on equipping people with practical strategies that can actually change your life and make your life easier. And it’s also to educate people that not everyone sees things in the same way, that someone who appears very shy and unsociable on the surface, might be having some quite severe challenges underneath.

DEBRA: Can we talk a little bit about some specific issues that young adults might have on the spectrum or otherwise (as you said it can apply to other people not necessary people who have autism) things like prioritizing tasks and managing deadlines, have you got some tactics that you could suggest that might help people to manage those issues?

ALIS: So autistic people in particular might have difficulties with this because these skills are all to do with executive functions which is the area in our brain that’s responsible for things like planning, memory, prioritizing, and not getting distracted on regulating our emotions but I think a lot of people have problems with those things anyway. So I think we can all learn to get better at prioritizing and meeting deadlines.

So prioritizing tasks can be difficult because a person may struggle to recognize what’s important, for example, an autistic person might just think that everything’s important otherwise why would they be doing it. So, I think it’s really important to help someone recognize what important means and to determine the value of things because that will help you know what to do first.

Managing deadlines can be really hard because a person might have a bad sense of time. They might not realize how long something is going to take. Sometimes I have a problem where I might have a lot of tasks, for example when I was at university and I just kind of had the assumption that every task was going to take the same amount of time when if I had just maybe taken five minutes at the start of every week and seriously looked at each task and properly considered how long it was going to take, how difficult it was, I think that would have been a really good tip for me to use and for anyone to carry on with.

I’ve also read about something called The Urgency Important Matrix which was created by an American president. So, it’s all about working out which tasks are most important to do based on how important they are and how urgent they are and getting rid of things that are not urgent and not important. So, I find that really useful as well. I also really like to do tasks that are really quick done straight away because it gets some completed straight away and that can be really empowering and freeing.

One thing that was really important and helpful to me with regards to learning to prioritize was actually deciding in my life what was important to me because it’s really difficult to prioritize things if you have to do so many different things every day and your diary is really full. And one of the reasons my diary was always full is because I was doing too many things to please other people or I was doing things that I thought I should be doing rather than things that I actually wanted to do.

For example, spending a lot of time with friends or trying to make new friends when inside I knew that really wasn’t me and I needed a lot more alone time. So, as soon as I started thinking about what was seriously important to me, it really helped me sort of declutter my life and then I had a lot less to do each day. So that was really important. It’s okay to use some hours for other people sometimes but we should always remember that it’s our own needs that come first and if we’re not looking after our own needs, then we can’t really help or support other people either.

Another strategy that I always have when I prioritize is thinking about what’s the worst that will happen if I don’t do something and if the consequence is really bad then that’s an obvious sign that I should do something straight away. Another good way to prioritize or think about what’s important as well so if not doing a task will hold up other tasks for other people, that’s another way to make sure you know what to focus on. I think that’s really helpful as well.

DEBRA: Another area that you provide resources on your website is around diet and exercise and a lot of people struggle with finding the balance between diet and exercise and how to stay healthy, you got any tips that you could suggest to help people in that area?

ALIS: I totally relate to that. I think a lot of people over-complicate nutrition and being healthy. I think eating properly is really important for mental health. A lot of people can have quite bad moods and they don’t sleep well and they get distracted a lot. And a lot of that can be attributed to them not getting enough exercise or having a bad diet and they don’t always realize that. So, I think eating well is really important.

I really just focus on eating the five food groups in moderation and making sure I get enough protein (I’m a weightlifter so eating a lot of protein is really important) and healthy fats because they’re really good at helping you to concentrate. And I eat a lot of vegetables as well. But I don’t really think it should be more complicated than that because life is so complicated already, so I think that’s fine, and obviously, I eat sweet things as well.

DEBRA: As you’re a weight lifter what are the benefits of sports do you think?

ALIS: The benefit is obviously the physical benefits and depending on what’s you do, there’s also a really strong social benefit as well because it can be a means of making friends and socializing but there are other benefits as well that people might not necessarily realize because sports by its nature is very technical and in order to get better at it, you have to actually dedicate to do it on a regular basis. So, it teaches you a good work ethic really of being disciplined and practicing and being persistent  and they’re really, really important skills that transfer to other aspects of your life.

DEBRA: One of the things that you talk about is not expecting the world to change to fit around someone who has autism. People adapting in working together and understanding each other, and that’s sort of big area, isn’t it in general when it comes to additional needs, and the whole idea of how much do you have to adapt. Do you think that there have been changes in terms of people accepting differences? You mentioned very early about people becoming more aware, but do you think there’s more understanding or acceptance?

ALIS: Definitely. When I think back to when I was at school like twenty years ago or even ten years ago when I was at university, even in that time, I don’t really think anyone really knew the word autism, let alone knew what to do with it. So I think so much has changed in the last five years really. I hear a lot of stories now about families with children and their children get all the right support and I think autism is a very open subject now and no one would really be surprised if you talk about or said that you had it because it’s quite widespread now, that knowledge which is excellent. And in turn, I think that has made people more empathetic of people who are different which is really important.

I think that where the magic happens in life is where you embrace the natural strength and interest that a person has so that they can end up sharing their true talents with the world, I think that’s really important which is why I love what I do now because I think I love writing and it’s what I was made to do. So, being able to do it has been amazing. So I think nurturing someone so that they can use their differences, their uniqueness in a positive way is really important rather than trying to change them or make them more mainstream for example.

DEBRA: Do you think there are still stereotypes around autism and what people are like when they have autism and people make assumptions?

ALIS: Yes, I do. I think the worst assumption that kind of affects me is some people think, they assume that I won’t want to do some things so they won’t even bother inviting me out or something. Of course, they think, ‘Oh, she’s autistic, she might not want to do that or be too much for her’. Someone actually said they deliberately didn’t invite me because they thought it would be too much for me. I know they were well-meaning but I didn’t like that assumption. I would much prefer to be asked, you know what I mean?

DEBRA: Yes there’s a saying “If you’ve met one person with autism, you’ve met one person with autism.” and not everybody. That’s the reason I asked because I just wanted whether or not you thought that there are still assumptions.

ALIS: That’s another good point as well. I think, as you say, we should always remember that everyone is different and I think sometimes an assumption that autistic people are very quite and introverted and always want to be on their own (and even I thought that as well). It was only very recently that I realized that a lot of them are not like that, they’re actually very extroverted and chatty and they want friends, they just maybe don’t have the social skills to be able to do that. So I think that’s really important to make people aware of as well. And it’s sort of fascinates me how autism is so diverse in that way but it is!

DEBRA: It’s sort of as you say there’s so many different assumptions about people that are not necessarily true because as you say, someone would think that maybe someone with autism doesn’t want to go out and do things when in fact, they could be very sociable. And someone else would be the opposite and go ‘Actually I don’t want to do that’ and you don’t have to have autism to not wanto to go out all the time with other people either.

ALIS: I always think that we should remember that everyone has their own personality as well and is a human being at the end of the day.

DEBRA: I suppose someone gets a diagnosis then that’s when assumptions get made because if you are diagnosed with a particular additional need then everything that goes with that maybe takes away from your personality and makes you someone who has, for example, autism.

ALIS: I definitely agree with that and I think that’s one of the drawbacks of having a diagnosis and the decision to tell people that you have ASD is one to think about really because unfortunately, a lot of people will also change their behavior and their thinking about you as well once you have a diagnosis in a way you don’t want them to as well. So, that can be really hard.

DEBRA: Just finally then, can we talk a little bit about the resources that you have available and the kind of things that you do, you mentioned you did rap songs and things like that, but what else do you have available for people and where can they go to find them?

ALIS: If you go to our website thegirlwiththecurlyhair.co.uk, you’ll find all the resources there. So, as I said, I’m primarily an author that’s what I love to do and I have a lot of books and they’re all really well-reviewed and endorsed by the leading psychologist, Professor Tony Attwood. In the last couple of years, I’ve also started making animated short films and that’s been very exciting; all based on the character, the girl with the curly hair and how she interacts with the world around her. So, we have little series like A Day at Primary School for the Girl with the Curly Hair all the way going up to A Day at Work with the Girl with a Curly Hair.

And we do training as well around the UK, so we do courses and again, they’re all to do with autism but I think a lot of people can benefit from it as well and we’re just sort of going into unconscious bias and empathy training as well. And we do webinars so you can access our training from your home, your computer, or your mobile at home if you don’t live near to our training courses. As I said, I’ve just started making rap songs as well, so that’s awesome.

DEBRA: Is that just something that you decided you wanted to do and tried?

ALIS: When I was a teenager, I was really into rap music and I used to study lyrics for hours every day and I used to rap to my favorite songs and I sort of got out of it as I started working but I had an opportunity last year to make a theme song for The Curly Hair Project so that kind of set me off again and now I’m working on an album. So that’s very exciting. And I think it’s a really cool way to get the message across as well about autism because a few of the songs are about autism.

DEBRA: Yeah, people accept information in different ways, don’t they? So someone might find that an easier way to get the information than some other way.

ALIS: Yeah, definitely.

DEBRA: That’s a really good idea. So, just very quickly, so the plans for the future, rap album, more books?

ALIS: Can’t really think of any more books that I need to write. I kind of covered most of the topics for the time being but I always say that and then within a few months, I write something else because I can’t stop myself but yeah, definitely songs and I really want to make of each a length film as well. That’s my aim for the future.

DEBRA: About the Curly Hair Girl type thing?

ALIS: Yes, a proper like 60-72 animated films.

DEBRA: Alis, thank you so much for talking to me. I really appreciate. The website is amazing and obviously, I’ll put links to everything. Thank you very much for your time.

ALIS: Thank you so much.

DEBRA: Key takeaways? Well, this week I’m going to take a quote from Alis, “Where the magic happens in life is where you embrace the natural strengths and interests that the person has”. I couldn’t have said it better myself.

Resources
The Girl With The Curly Hair website
The Girl With The Curly Hair on Facebook

Please subscribe to this podcast and if you have a story you would like to share I would love to hear from you just email debra@journeyskills.com

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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

Please subscribe to this podcast and if you have a story you would like to share I would love to hear from you just email debra@journeyskills.com

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Increasing The Options With Scope

Podcast Episode 67 Did you know what you wanted to be when you grew up? Most of us didn’t but we figured it out along the way because we were given opportunities for part-time work or work experience. For many young people with additional needs, this doesn’t happen, meaning they don’t always have a clear idea of their options.

In this episode, Guy Chaudoir from Scope explains why this shouldn’t be the case, and discusses some ways to help young people increase their options. This includes changing the way they approach applying for jobs and the interview process. It’s also about changing the perceptions of employers and Guy explains the work Scope has been doing in this area.

Scope provides a bridge to employment by helping young people with additional needs to find their own path into work. They also help open doors with employers, so the path can continue forward for both the young person and their employer.

Show Full Transcript
Podcast Transcript
DEBRA: Welcome to Episode 67 of the Journey Skills podcast. Back to my favorite topic which is you know by now is work but from a slightly different angle. I’ve spoken to quite a lot of people recently who I would describe as social entrepreneurs who have started up social enterprises. And we talk about that in this episode, we talk about the importance of social entrepreneurs and social enterprises. I’m talking to Guy from Scope which is a UK-based organisation which is focused around helping young people with additional needs get into work. And although this is a UK-based organisation, I’m sure wherever you are in the world there are very similar organisations.

It’s great to have people starting up small businesses from scratch, maybe you even saw my Facebook live last week from Ignition Brewery in London that was celebrating the one-year anniversary of their taproom and they’re a really great example of social entrepreneurship and social enterprise. Nick and Will have created a sustainable business which pays the people they employ so it’s not a charity and it survives because the product is something people want. It just happens to provide employment for people with additional needs.

So what Scope is, I think it’s a bridge between employment and if we’re really honest, that proverbial cliff that people talk about, that young people with additional needs can fall off when they move from education and they don’t necessarily have anywhere to go after that. And Guy explains all the things that Scope helps young people with and they are the essential things that we think about; CV writing, interview skills and things like that. But he also talks about the importance of helping young people identify where they really want to go because as he explains, sometimes they haven’t really sat down and thought about exactly what they want to do, they’re just thinking about ‘I want a job, I want to work’. And I believe that organizations like Scope are key.

If you listen to any of the podcasts where people have started up businesses which make money so they can spend money on employing more people, all of those organizations have behind them in some way shape or form another organization helping young people develop the skills that they need. Scope are a charity and they play a really important role, not in providing employment itself, what Scope and other organisations do really effectively is not create jobs, they help create the employees. They help develop the skills of young people so that they can see themselves as employees, so they can see themselves as someone who can go out and get a job.

DEBRA: Today I’m talking to Guy Chaudoir who’s from Scope which is an organization based in the UK. Welcome, Guy.

GUY: Hello.

DEBRA: Can you tell me a little bit about yourself first of all and then also about Scope?

GUY: I’ve been at Scope for nearly seven years, managing all of our employment services but previously to that, I’ve worked in apprenticeships both here and in Australia and also supporting people get into work and in my previous life I was a retail manager working for a big organizations like Virgin. So, Scope, we’re a national disability charity and we operate in England and Wales and our real aim is about equality. So, it’s about equality for disabled people so that they have the same rights and access as non-disabled people, be that in getting the best start in life, being financially secure, or to be able to live the life they choose.

I work on, along with my team, around employment.  I manage Scope’s support to work service which is a national digital employment service which supports disabled people across England and Wales, to help them find paid work in something they want to do. So my team really help people to identify what skills they have, identify organisations in areas and career paths that people want to work into and then really with the nitty gritty things about finding work from creating and evaluating a really good CV, developing a really good cover letter or working through application forms to things on interview skills and making sure that people are getting the right support, be it reasonable adjustments when they start work or getting the right support in terms of any adaptations they might need for an interview or for an assessment center as well.

DEBRA: So how do people come to Scope?

GUY: We have quite of presence on the High Street with the Scope retail charity shops which raise funds for the organization but also, we do a lot of digital marketing and have a digital presence, through Facebook and Twitter. We try to make sure that when people are looking for disability employment through search engines that they find us as an organization.

So when someone does find my service, the support to work service, they can sign up online and once they sign up online within forty-eight hours they’ll get a call from one of the team to arrange an initial appointment with an employment advisor, over the phone or it can be via Skype or via email depending on people’s needs or in terms of barriers to employment.

DEBRA: So what kind of things do you talk about in that first phone call?

GUY: The first phone call of Scope session is really about what people have done before, what they’re looking for. So there’s no real kind of hard and fast rules, it’s very much about having an initial conversation getting to know the person to see what they perceive their barriers to employment are or what the barriers they found previously and then really working with them to create an action plan that’s really personalized to themselves.

So, the first tool to finding a job even now and has been for a long time is a CV. If you’re not getting interviews, there’s possibly an issue with the CV, it’s not doing the right thing or you’re not applying for the right jobs. So the team really take that back to basics, look at CV’s, are they the right kind of thing, are we applying for the right thing, are people limiting their job search or are people just going in the market and not being savvy in terms of what jobs they’re applying for and just applying for everything, which then doesn’t help at all.

DEBRA: What would you say to these challenges that it’s the CV, is that something that they struggle with?

GUY: Not necessarily. I think some people just need a little tweak and it can be just a little tweak from an unprofessional email address to too much on it. We’ve seen some CVs going back a good twenty years not very useful. That’s just one kind of barrier sometimes it’s barriers of perception of people applying for jobs.

And I think it’s also about the availability of what people want to do in their local area so there might not be the opportunities that they can see in the local area and sometimes that’s a real barrier. Unfortunately, there’s not a lot, all we can do about that in terms of creating those kinds of jobs. How people apply for work especially how people perceive themselves is also sometimes a real barrier. We see a lot of kind of negative language on CVs of people saying “I can’t do this, I can’t do that, I can’t do this” rather than talking about what’s unique about them and talking about what they would bring to an organization.

DEBRA: Can you talk a little bit more about that then, the big question that people often have with their CV is whether or not they talk about what their additional need is?

GUY: Yes and I always think it’s personal choice and I think there are lots of really good organizations out there who really want to employ more disabled people and if they are saying that on their job advert, then I think this is something you would mention in the cover letter or  the application form rather than sticking it on your CV. I think knowing when to talk to an employer about your disabilities is really important and we have got lots of information about that on our website.

But I think it’s really about that personal choice but also thinking about “If I am to get to an interview would I need an adjustment for the interview?” It could be a physical adjustment in terms of if you’re a wheelchair user and there isn’t a lift or there isn’t a ramp, that’s probably not going to be the best place for you to work anyway.

But thinking about what you need to tell someone so you might tell them when they offer to take you to the interview stage. So, I, as a rule of thumb wouldn’t put disability or barrier on the CV but I’d really think about having a strategy of how you are going to talk to your employer about your disability, about what adaptations you need.

We’ve worked with a lot of deaf customers who have text-only written on their CV and that’s a need for them because if someone rings them and they don’t answer the phone then they are never going to be able to get into employment. As a rule of thumb, I’d say not in a CV but really think about when you are going to talk about it if you are going to talk about it.

My suggestion would be to obviously talk about it if it’s a guaranteed interview that is the organisation is saying “guaranteed interviews to disabled applicants”. Then definitely you need to talk about it otherwise you’re not going to get that guaranteed interview. But also if you need certain adjustments when you’re going to start work but it’s really a personal choice if you want to talk about it and it might be once you’ve started work, that you talk to your line manager about your condition/disability/impairments or you talk to your team, or you don’t talk about it at all because it’s your business at the end of the day.

DEBRA: When it comes to interviews though, for some people who have additional needs,  say something like autism, it might be something that they’ve mentioned in the cover letter though.

GUY: Yes, definitely, we’re working with someone at the moment for who an interview’s quite a petrifying experience. He is on the autistic spectrum and he was sent to an assessment center and they just said in the email they wanted him to go to an assessment center. He didn’t know what that meant he had no perceptions or ideas so we worked with him. We didn’t do this for him we said: “Go back to them and ask what exactly is going to happen”. Then he knew that it was going to be a group session and then it was going be one to one talk and then they were going to ask questions.. So it was more about him saying “I’m autistic. I need to know what this is going to be  like exactly so I can plan and organize myself.”

And I think sometimes recruiters not necessarily trying to trick people up but they just don’t think about these things and I don’t think anybody does it with any kind of malice. I think it is about people going “Oh, this is just the way we do it” And I think a real reasonable adjustment is a change the interview process. And that’s something you can definitely request.

So if you think you’d be better to show someone that you could do a job then requesting a work trial or a trial shift is a really good way to show “Yeah, I can do that” rather than somebody who’s really good at sitting in front of someone and telling them they’ll be good at their job or being asked competency-based questions or hypothetical questions could be a real struggle for someone on the autistic spectrum.  If somebody is saying “Can you tell me what would you do in a situation?” then they might respond “I don’t know, I’d have to see”.   So it’s better if they can talk more about their previous experience. I think asking for adjustments in interviews is really important I don’t think people do it enough.

DEBRA: I was just going to ask you, what do you think is the biggest challenge? You mentioned things like people going for the wrong jobs and maybe putting too much on their CV, but what from your experience is the biggest issues for young people looking for work?

GUY: I think it’s sometimes and it goes back to school and especially people who have additional needs or special educational needs who don’t necessarily get the same opportunities as their peers in regards to work experience or summer jobs and that kind of thing. So, they haven’t got anything to put on their CV because they got excluded from doing work experience. So, I think that can be a real challenge because when you apply for a job and put in a CV and you haven’t got anything to put on it that’s really difficult.

I think it’s also just about opportunities so it’s about grasping every kind of opportunity that you can. I think access to apprenticeships is really difficult because apprenticeships, until recently, required people to have some level of Maths and English but there has been relaxation on that around people with learning disabilities. But I don’t think that it’s been well enough communicated, especially to apprenticeship providers and employers so it’s about making sure that people are aware of that they can access on an apprenticeship even if you don’t have the level of Maths and English they’re requiring if you’ve got a learning disability and if you have an educational and health care plan.

But also, it’s just a bit about employer attitudes as well. It’s just people thinking “Well this person’s going to be more difficult. This person’s going to be harder to help.” We supported someone in recent years who wanted to work within a creative field but was finding it really challenging to find that opportunity and we worked quite closely with an employer to really talk to them about what needs he had and what they could do to make the environment more accessible to him and that was really good. They came to us and said “We don’t know what we need to do” and one of my team sat down with them and said, “Well, think about breaks, think about quiet places, think about lights that might affect people.” That kind of stuff is often what employers can buy into and really help that person to be successful in their role and really develop.

DEBRA: Do you think there’s a misunderstanding of what reasonable adjustments are?

GUY: I think people don’t know what they are. I think in the field that I’m in and you’re in that we know what it is and we can see it but I think the average person on the street who might own a small business or shop or restaurant or cafe doesn’t know what a reasonable adjustment is  and wouldn’t understand what it is.  I think that’s a big education piece for us as an organization but also from a policy point of view from the government for them to be able to say “This is what a reasonable adjustment is, this is why you have to do it by law.  I think the problem is that the term reasonable is very varied in people’s minds so that doesn’t help. I think once people are aware of it, they’re like “All right. I understand now.” But I think the awareness isn’t there.

DEBRA: You think there’s not a clear definition?

GUY: Well I think the definition is whatever is deemed reasonable so it’s not a clear definition to me. That’s kind of a tricky part of it as well and I think there is that support and there’s support through access to work which I think is a really important scheme that also one people aren’t aware of. Unfortunately, it is sometimes the case of the person looking for work having to educate an employer and saying “I’ve got these additional needs, I’ve got these barriers or I’ve got this supporting needs. But this is what we need to do, here is a fund from the government from access to work that will pay for this. All you need to do is agree to it” and then I think they will go  “Alright. Fine.” And I think that unfortunately the onus is being put on disabled people to push that rather than people understanding this in the wider business community.

DEBRA: Do you think that’s a big issue then, cost?

GUY: I think that it costs sometimes but the research we’ve done as an organization has said that, that employer’s attitudes are a big barrier and I think it’s more about the employer’s understanding as well and that’s what we really want to change as part of our Work With Me campaign. This is really focused on employers to show them that there is an untapped pool of disabled talent out there and that by being aware of reasonable adjustments and different schemes and different support that’s out there that disabled people can be an asset to an organization. They are shown to stay longer in positions and be more productive as well so it’s a real win-win for employers, they just need to get on board with that.

DEBRA: When you try to persuade them, do you say “These young people will stay longer?”

GUY: Yes and  we talk about that (and we’ve got a lot of research around that)  but we really talk about the person, we talk about why they will be an asset, about how they can show they’re an asset, how they can speak positively about themselves and show themselves as a positive motivated person that’s going to be the best fit for their organization. And that’s what everyone should do in any interview situation.

DEBRA: Have you got some examples of employers that you think are ahead of the game?

GUY: We work a lot with Virgin Media and so they have really committed to becoming a better employer of disabled people and are doing a lot of work in that space. Where I’m seeing a lot of really good work is in kind of like the social entrepreneur field so lots of organisations that are setting up things like cafes or valet services and I think those are really good and I’m seeing some really good growth.

We work with a partner called Unlimited and they are really keen to promote social entrepreneurs for them to go on to employ more disabled people and then create more disable entrepreneurs as well. Because self-employment and working from home is a really good opportunity for disabled people who might have access needs but also might have a fluctuating conditions so that working from home or being home-based is a real kind of bonus. And the internet has opened up those kinds of opportunities. Skype meetings and conference calls means that you don’t have to be nine to five in an office to be able to do a similar job. We have got people who work for us who are home-based and can do exactly the same as someone can in the office and probably get less distracted by everyone else around them anyway.

DEBRA: In terms of helping people, you help them with CV writing, with getting interviews and talking about reasonable adjustments. When they’re actually in employment, do you provide support to the employers?

GUY: On our support to work service, we don’t because we’re national service and it’s more a kind of advice and guidance service but we offer three other employment services which are much more localized face to face support. We work with employers to ensure that somebody is comfortable and in employment and any kind of barriers or bumps along the way that come along so we definitely do that with those ones.

We’re just about to launch a new service, just so new it doesn’t have a name yet which we’ll be launching across the whole of London for young people who are in education and it’s more career advice service because we’re finding that the people coming to us who are coming out of school with special educational needs or additional needs and they haven’t been given any kind of careers advice. We are going to be working with schools across London to work with disabled young people to give them kind of career advice and goals and really work with them to think about what’s their next step.

DEBRA: If you had to talk to parents who maybe won’t have access to Scope or can’t get help getting the young person access to Scope, what kind of tips would you give them in terms of getting the young person ready for employment?

GUY: I think it’s about confidence and motivation. There aren’t many jobs where you won’t have to talk to somebody at some stage so it’s about being comfortable in those kinds of social situations to be able to talk to someone and then that can develop into interview skills. I think volunteering and work experience is really key, to give people that stuff they can put on their CV. It also builds that confidence around meeting new people, learning new things and really kind of seeing if that’s the right kind of career goals to consider. I think it’s about opening your eyes up to all opportunities that are out there. Make sure that they’re in touch with local councils to see if they’ve got any kind of schemes to support young people. All the councils I know are interested in recruiting young people and apprentices into their organisations. Is the university route right? Is straight into work right and how does that work?’ and looking at other supported employment services or looking at really just any kind of community groups that are doing anything to develop those kind of skills as well.

Because I think with most jobs you can be taught how to do the job on the job.  A lot more what people looking for are attitudes and attitudes, about looking at where this person fits in the team. And so, that kind of confidence to communicate with strangers is really kind of important because that will really help in terms of developing those kind of social skills and social networks. So it’s really about thinking about those social kinds of networks and I’m not talking about getting a LinkedIn profile, I’m talking about just knowing your friends and where they’re going to or the people you’re in a club with, or an organisation that can really help you, that kind of networking as well.

DEBRA: I’m getting the impression that often young people with additional needs then aren’t really preparing for work in the same way that someone else might.

GUY: I think that’s where we’re falling down is that people aren’t being given those kind of skills to transition into work, understanding about applying for jobs from CVs to cover letters, interviews to managing money, to understanding the wider world. I think that’s where the focus needs to be about making sure that people are prepared. If they’re able to and they want to work and knowing how to work, how work works. We do a lot of what we call World of Work sessions where we take a group of usually young people to different businesses that we’re working with and they get an understanding of how the business works, how’s the different parts of it fit, how’s the different functions of the organisations fit together and what work is like.

Also, the understanding that someone’s work is quite boring and sometimes you might just be sat in front of a computer all day and typing and sometimes work isn’t that exciting and understanding that what you think might be really exciting is after getting some experience  a case of you going “Oh no, I definitely don’t want to do this”. Having a real perception of what work is like is really important, I think.

DEBRA: You’re suggesting that we need to give young people more chance of doing work experience, the big challenge there is of course, perceptions among employers especially when  work experience means something you tend to do in a smaller organisation.

GUY: I think lots of large organisations do have work experience schemes abut it is about challenging that perception again, similarly with employers, but I think work experience is a real kind of feed into it. And it doesn’t have to be two solid weeks of work experience. It could be a taster a day or just to see what a day might be like in an organisation. And I think it’s really about community engagement and about corporate social responsibility. It doesn’t hurt to ask and I think that’s the key as well and saying why you want it and how it would be of benefit and then how it can be of benefit to them so selling that. But it is a tricky one,  and I don’t think that barrier is ever going to go away A lack of awareness is the barrier unfortunately but I think that’s something to try and work with and try and make sure that people are getting the right opportunities.

DEBRA: And I would assume that the more employers that take on young people with additional needs, the more perceptions change?

GUY: Yes. Definitely and the research we’ve done says that lots people have never spoken to a disabled person or knew a disabled person, when you’re looking at this there’s forty million disabled people in the UK, that’s a lot of people. And so, I think it’s all about perceptions. It’s about the perception in the media, what people see on television, in soaps, in current affairs, in dramas, where the disability doesn’t define the person, it’s just part of them and I think that really helps in terms of attitudes.. its about changing people’s perceptions to ensure that there is a equality and that people can see that that and it becomes a norm.

DEBRA: Thank you very much for your time.

GUY: Thank you.

DEBRA: Key takeaways? It’s essential that young people have the opportunity to explore their options to try and figure out exactly where they want to go and that they have the resources and the assistance to do that. And also, that it’s important to try and get experiences of work along the way. And I think this is one area where, I’ll be honest, I don’t think I’ve cracked it yet, I don’t think that my daughter has had enough experience of work in her life.

Resources
Scope Employment Services
Work Advice
Writing A CV

Please subscribe to this podcast and if you have a story you would like to share I would love to hear from you just email debra@journeyskills.com

Please Review Us On iTunes

If you liked this podcast and would like to help us, please do the 1, 2, 3:
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