Transcript: Humans of Scotland

A campaign that highlights the voices of those with long term conditions, disabilities and those who are unpaid carers.

Podcast Episode: Humans of Scotland

Category: Disability 


What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

MM - Michael McEwan
AM - Angela Miller
RL - Raven Laine
MB - Michael Byrne

MM On this episode on I went along to The Alliance Scotland, where The Alliance run a project called the ‘Humans of Scotland’, and we’re going to be hearing from a couple of people that participated in the ‘Humans of Scotland’. Raven Laine, Michael Byrne, and also first off we hear from project manager, Angela Miller. So Angela, tell us a bit about what is ‘Humans of Scotland".

AM ‘Humans of Scotland’ is basically a project that we developed here at The Alliance to reflect the Alliance’s values. So here at The Alliance we put people at the centre of everything we do. So by people I mean people with long-term conditions, people with disabilities and unpaid carers, and that is a thread that runs through the heart of every single piece of work we do here. What we wanted to do was to develop a project that reflected that, and really share the voices of people with long-term conditions, with disabilities, and people who are unpaid carers. So we developed ‘Humans of Scotland’ based on the series called ‘Humans of New York’, which tells the stories of everyday people living in New York. So we wanted to do the same kind of format. So we started by putting calls out for stories to people that are our members here at The Alliance, and basically it just grew from there. So we ran a kind of pilot of the project last December. We decided to keep doing it this year, and I was privileged enough to be brought in to run the project, and it has just been absolutely fantastic. It’s gone from strength to strength, and the privilege that The Alliance has had in terms of being able to share people’s personal stories has been absolutely fantastic. We’ve raised awareness, we’ve sparked conversation. The stories are thought-provoking and inspiring. We have met some of the most amazing people through this project and we’ve actually created a bit of a community around ‘Humans of Scotland’ as well, where people have become friends, people stay in touch with each other. It’s just been a really inspiring process, and people are at the centre and it’s about being human and it’s about being fragile and strong, and it’s about finding the strength to go through difficult situations and face challenges time and time again.

MM So why do this project?

AM Basically we felt that people’s voices aren’t heard enough. People living with long-term conditions, disabilities and unpaid carers aren’t heard often enough in the media, online, across social media, and we wanted to create a platform that allowed people’s voices to be heard. So we really wanted to shine a light on people’s experiences and say, “Here are the people whose voices you need to hear. This is really important. People have important stories to tell about things that you might know nothing about”, and we wanted to, like I said, spark conversation around this as well, and running the project on social media has really allowed us to do that. So we’ve had loads of feedback on social media, people commenting on stories, people empathising with people whom they may never have known before, who they might not have heard of before, whose stories they wouldn’t have known before. So it’s been a fantastic way to shine a light on people’s stories.

MM And obviously we’ve got two of the people here. We’ve got Michael Byrne, listeners to Iriss might recognise his voice and part of his story, but Michael’s here to speak about the ‘Humans of Scotland’, and you wrote a chapter in the book and we’ll come to that later on in the interview, but can I just turn to you Raven? Why did you get involved in the ‘Humans of Scotland’?

RL Well I was just like really overwhelmed to be even asked to be a part of it. It was like out of the blue to me and I was just like, “Yeah I’ll definitely do it, get my perspective of being a younger person with a disability that is invisible”, and I thought it was really important to get that message out there to make sure that everyone, if they are in the same situation, it gives other people hope, like reading about everybody else in the book and what they’ve been through. I was just like, “Oh my god, it’s not just me. I’m not so alone”, and it opens up another world to you. So instead of just being isolated at home and being in your own little like depression hole, you’re out there and you’re like, “Well I’m not alone anymore, and if I need any help, if I feel like I’m struggling I’m sure one of these other many people that are going through the same thing will be happy to listen to me or talk to me”, and it’s just giving you that sense of being part of the world, not like you’re at the side-lines anymore. It’s like you’re back being in the world again and you actually matter and people are together with you, and it’s just a really overwhelming feeling to be a part of I think.

MM And do you feel better within yourself that like you’ve told this story?

RL Oh yeah, definitely, and like knowing that maybe my story will help somebody else in the same situation, and if they need like someone there they know that I’m also going through the same thing so you’re not alone, and it’s just having that little bit of humanity back in your life. Like you’re not just a walking stick or you’re not just a wheelchair, you are an actual person again and you’re back in a community, and it really is one of the best feelings I’ve ever had like being part of the book and everything. So I’m really grateful.

MM Can you tell us a wee bit about your story?

RL Yeah. So mine’s is like really little compared to everybody else’s, ‘cause I have a tendency to ramble a little bit. So I was very like aware to keep mine short because I was like, “Otherwise it’ll take up pages and pages”. So but mine’s is mostly about the looks that I get about my Blue Badge when I get out of my car, because often when I park in a disabled bay it’s because I can either park further away and not go shopping or I can park closer to the door and actually get groceries that I need to eat and survive. The way I get treated when I get out my car, sometimes I have to put on a bigger limp because people are giving me the look of shame, like, “You shouldn’t be parked there”, and I’m like, “Oh well, quick, make myself look more disabled”. I don’t know how that works but you put on a little bit more of a limp, or if I’m in my chair even and I get up to get like something from the shelf, it’s the looks you get and it’s very degrading. It makes you feel like you’re a crook, like you’re doing something bad, and I’ve had elderly people being like, “I need that space”, and I’m like, “Well I’m not being funny, I’ve got arthritis just like you. I need the space as well. If you give me two minutes, I’ll be out.” So I just wanted to let people know not to judge as soon as you see someone. I hope it’s helped someone out there anyway.

MM And Michael, how did you get involved in the ‘Humans of Scotland’?

MB I saw Angela’s post on Twitter I think it was, just basically asking if anyone would like to contribute, and I contacted Angela and said, “Yeah, I’d love to contribute”, and I met Angela and we tried very hard to squeeze my story then into 300 or 500 words or however many it was. So that was simply how I became involved, and you know the catalyst for me, and a wee bit like yourself Raven, was that for me I have complex post-traumatic stress disorder, and I don’t know many people that do have that, but whenever you turn the TV on and you see the drama series’ episodes and all of these things and anyone’s got PTSD on it, they tend to be the baddies. They tend to be the guys who are likely to shoot you, who blow up buildings, who’ve got military experience, all of that, and programmes like “The Bodyguard” a year ago or whatever, these stigmatise PTSD in a negative way. So for me it’s not like that. There’s many of us who’ve got PTSD in the real world who aren’t a threat. The biggest threat we are is to ourselves, and it’s not to anyone else. So not that I was on any crusade to be this hero of PTSD, but just as you said, to normalise it. We’re all in plain sight. We’re sitting next to you on the bus and on the subway and we’re struggling with PTSD. We’re not going to blow buildings up or shoot anybody as the media or drama series say we are. We’re not. We’re just like everybody else, ‘cause we are just everybody else.

MM I know myself, as a journalist but I’ve got a disability as well, the labels that people put on you, and we’re like everybody else. We are kind of normal, but I don’t like that word normal, but you know what I mean by that?

RL Yeah definitely. I think there is a big stigma. I think it’s one of those things that people just, what they’ve seen on TV is like that’s the only section, and because it’s so specific the TV doesn’t show you a variety ‘cause it’s obviously a two-hour film, they’re not going to show you the ins and outs of what they’re going through from day to day. It’s very narrow. It’s very like pinpointed and it’s really difficult once you’re in that box to be like, “Actually no, I’m not.” On the subject of PTSD, I had like a flashback the other day and it was, it just hit me out of the blue. I was watching YouTube and a picture of potatoes came up and I got hit with the smell of potatoes and it took me right back. It was not a very nice memory but like it took me right back, and I was like, “Wow.” This isn’t like, I’m not going to, as you say, go and do anything crazy, it was just overwhelming, and then you have like a little bit of a cry and then you kind of bring yourself back to normality by whatever means. Like I squeeze my arms or I get my friend to like touch me, and like nice smells and stuff to kind of get me out of where I am, but it’s like that side of it’s not shown. It’s only the bad side or it’s only like when you see on TV benefit cheats and stuff, it’s always the people that pretend to have these illnesses and then everyone just presumes if you don’t look like you’re supposed to be disabled, whatever a disabled person looks like nowadays, if you don’t look like that then you’re fine and it doesn’t matter, and it’s really degrading when you have to try and prove that you are disabled and you’re like, “No, I really am. Honestly, I’ve got a blue badge and I’ve got a bus pass. I can give you evidence. I carry around my PIP letter”, you know, and just to prove to people, it’s kind of sad.

MB Yeah, I totally agree with that. As I’ve been doing a lot of public speaking, I’m a professional speaker now, and I deliberately turn up and do the public speaking with a suit, a shirt and a tie on, and then when I start talking, when you’re onstage people just assume that because you’ve got a suit, a shirt and a tie on, you’ve maybe shaved and you look the part, you can’t possibly have that, and then I get starting and I say that I have a mental illness, you could hear a pin drop because people look at you and think, “Well you can’t have, ‘cause you look okay”, and the kind of theory behind it all when I get into it is to say, you know, “Look beyond what you actually see, because what you see is just on the outside. It’s what we’re trying to present, whether that’s a suit, a shirt and a tie to cling onto reality.” That’s what I was doing in my breakdown, but we’re not what we were. We’re not what we are on the outside, and the sooner that we can, or society as the bigger picture, can actually just look past that and see the disability either as visible or invisible. Either way you still have it and you shouldn’t be judged either way.

AM Yeah. I think one of the things that I really noticed when running the project and collecting people’s stories was that there is stigma attached to almost every single condition you can imagine, from invisible disabilities like arthritis to things like complex PTSD, and a whole range of mental illnesses, but also to things like sensory loss. There’s stigma attached to that as well, and people not understanding the needs of people with sight loss or hearing loss and the kind of misrepresentation of people that comes with all of that, and it’s a mountain that people have to climb actually. It’s really, really tough for people and it’s a theme that came out in many, many of the stories was that there is this stigma attached, and the theme that people just wanted others to see them for who they are rather than for a disability or a health condition not negating the disability or health condition as part of somebody’s experience, by recognising that we are whole people, we are not just that label as you say, and it’s been a really important part of the project to get that across.

MM So you made a book. You published a book.

AM Yes, we published a book in September.

MM Tell us a bit about that. Where did the idea come from and what has the response been like?

AM So when I started in my role I wrote a proposal for the project and I thought, “Be bold, go big, put in it that we want to publish a book”, and it was a dream at that point. I just thought that this would be amazing to have this collection of stories in a hardcopy that would be a testament of people’s experiences and it would live on and it would exist past social media. So we got the go-ahead for this and began picking the stories that we were going to put in the book, and we picked thirty stories out of the whole project, which was so difficult because every story is just amazing, and we selected the thirty stories and went through the process of producing the book, and we produced a hardback copy with beautiful photography and it’s now in every single library across Scotland. So people can access it really, really easily, and we held a launch night in the Scottish Storytelling Centre, which was just the most special night. Michael was there with people telling their own stories and we did a panel interview with people to bring their stories out in a bit more detail, and the energy in the room, there were about one hundred people there, it was just beautiful, wasn’t it?

MB It was …

AM It was amazing.

MB … incredible, and for me it’s just humbling. The whole ‘Humans of Scotland’ for this past year has given me opportunities that I would never have been afforded had I never have gotten in contact with Angela, and I’d like to thank you for that. The opportunities to just have your voice heard, as Raven said, to be seen as a value to society despite having an illness or whatever it is that we’ve all got. It’s just incredible and it’s really empowering, and as I say, it makes you feel that you’ve still got value in society.

AM Yeah, it’d be really interesting for me to know from Raven and Michael actually how it feels to be part of a book, because obviously it’s, like I say, that’s a permanent record of your stories.

RL I was overwhelmed. Like I was just like blown away that I was in it. Like for instance, just to be asked for my story and then to actually have a hardcopy. I wasn’t able to make the opening but when I got my book through the post I was like, I showed everyone. Like every single person I’m like, “You will sit here and you will read this cover to cover and you will love it”, and it was just so overwhelming, and to read everybody else’s stories as well. Some of them I was just like blown away. I was like, “You guys are just amazing.” Like I can’t believe that I was next to these other amazing people. It was just, it’s just so mind-blowing. Like I still don’t think I’ve got over it to be fair. I still don’t think it’s properly sank in.

MB I totally understand. For me, to say that it was really humbling, and mine’s is at home and I’m keeping it for my son so that when he grows up he can maybe understand that it’s alright whatever difficulties he may or may not encounter as he grows up, but maybe that his old man was brave enough to stick something out there in ‘Humans of Scotland’, but that you guys put it in a book, which is just incredible. So I’m extremely proud of that.

MM Am I right that this is the first time it’s ever been done, not within an organisation, but through the whole of Scotland or the UK, that a book is inspiring people to break down the barriers and stuff like that, because usually you find that you hear individual stories on the news or in papers or whatever but you don’t see a lot of stories in a book, and as you were saying, breaking down the barriers and, “So what? I’ve got a disability. I can still go out and have fun and have pals”?

AM Yeah. I think I’m aware of some books that have been written on particular topics. So for example a book written about breaking down stigma around HIV for example. There is a book that exists around that and there are books that exist around specific conditions, but I think what we’ve done differently is bring a breadth of conditions and disabilities, stories about them, together so that people can get a really broad understanding of a whole lot of experiences. So it’s not something I’ve seen being done before. So I think we are the first to do it, which has been absolutely brilliant, and I think we’ve really broken some ground with this and we’ve had a lot of recognition in the media. The BBC have covered us, the Evening Times have covered us, Holyrood Magazine, Third Force News have covered us. Because the stories are so inspiring it’s the strength of the stories that gets the coverage. It’s not what we do, it’s the stories that speak to people, but we’ve also had recognition in the Scottish Parliament as well with a motion in parliament that gained the support of a lot of MSPs, and we sent books out to the MSPs as well. So we have had a lot of recognition and I think the project really speaks to people and I think people have a real curiosity about other people’s stories, and of course in the book the First Minister wrote the foreword. So we were very privileged to have her input as well. So it just shows you how far this has travelled, and actually when we launched the book we were trending on Twitter in Glasgow, so that was exciting to see the amount of Twitter activity that was going on. Like I say, that is because of the strength of the people’s stories. That’s not just because we’ve promoted it on Twitter or just because we’re talking about it. It’s because everybody has a curiosity to learn about other people’s experiences, and that’s what really drives the project on is the strength of the stories and people’s own curiosity.

MM Finally, what has the feedback been like from your pals and also the general public to the book? What has the feedback been like, because I take it it’s been positive but what’s the message that people have been saying?

MB For me, primarily to my wife, but Josephine will kind of say to me that the biggest part of my downfall was not talking about my illness and not talking about the trauma that I’d been through and all that stuff, and that’s what ultimately led to my breakdown. Since I came into my breakdown this is kind of what I’ve been doing. So Josephine will kind of say to me, “For forty seven, for forty eight years roughly, you never spoke about anything. You never spoke about your mental illness. Now you don’t shut up about it”, but it’s the raising awareness part of it. So it’s all positive to even be in the book, but to hear the accolades that it’s had as well and to be in amongst such incredible people. I’m a bit like you, I read my story and I think, “That’s nothing compared to all these other people.” So it’s humbling and I agree with you that’s it’s something that’ll be there forever.

MM And I suppose at the end of the day we’re all people?

AM Yeah, and that’s in the title, ‘Humans of Scotland’.

MM Yeah. It kind of gives it away a wee bit. Yeah, yeah.

AM It does a bit, but it’s that common humanity that we all share that binds us together as people, as communities, as a country. It’s such an important message to get across, as Michael said, that we are just all people, and that bringing people together, whether it’s through social media and sharing the stories online, whether it’s through somebody picking that book up in their local library, whether it’s through somebody seeing a Tweet about the online version of the book, or whether that’s somebody with sight loss who’s reading the braille version of the book, which we’ve also had published through Royal Blind, who were generous enough to do that for us, it’s all about sharing and bringing people together at the end of the day.

MM And what about yourself, what has the feedback been like?

RL Yeah, so I’ve had like all my friends and family, and I put a link on my Facebook so like everyone on my Facebook has seen it and they’re all like, “Oh my god, this is really amazing. The book is really inspiring”, and then a lot of people were like, “You’d never know that these people had this”, and I’m like, “That’s maybe not the takeaway you want”, but they were like, you know, and I’m just like, “Well that’s the point of it. We’re all people. We’re all the same”, and everyone that I’ve spoken to about it has been overwhelmed and just been like, “This is amazing”, and then I get a lot of people going, “Have you met these people?”, and a couple of people, “Have you met her?”, and I’m like, “Yeah, I’ve met a few people but not all of them”. So but they’ve all been really positive and been like super like, “This is amazing. You’re getting the stories out there. You’re getting these illnesses and these things publicised and making them aware that they are out there and we’re just like everyone else.”

AM I think one of the loveliest Tweets I saw when we launched the book was from a chap who said, “These stories will change you”, and I thought, “Wow, what a recommendation for the book, that these stories will change you and your outlook on life”, and that’s what we’ve aimed to do is raise awareness and change people’s perspectives, and I’m so glad to say I think we’ve achieved that, and we’re going to continue with the project into 2020, so more of the good stuff.

MM Well thanks for your time, and good luck!

MB Thank you Michael.

AM Thanks.

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