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15th October 2024

bbc.co.uk/accessall

Access All – episode 129

Presented by Emma Tracey

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EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Father Kevin Crinks, you’re a priest and you contacted us and you’re on the line. Hello.

KEVIN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, I’m down here in Assisi in Umbria in Italy. It’s a beautiful, beautiful sunny day. I’ve got to say that in case it’s raining where you are now. Anyway I don’t care because I’m not there [laughter]. But I came last Friday on pilgrimage. This is about my fourth time to Assisi. Ìý

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What spurred you on, Kevin, to pick up the phone, get on the WhatsApp, put the word Access before your message and ring 0330 123 9480, or type that into your phone, and then write us a message? That’s quite a lot of steps. I’m very, very proud of you. Why did you do that?

KEVIN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, thank you. Well, being a disabled person, I have rheumatoid arthritis, and Assisi is a place of hills and steps and ancient buildings and things like that, so access for the disabled is, well let’s just say it’s a bit minimal, and occasionally, well, challenging. So, I was quite taken by the fact that I went down to St. Francis Basilica early Sunday morning and to my surprise there was a huge piazza there all covered with gantry and various things being set up, staging and TV vans and so on, and it was all for the G7 Disability Conference that was taking place, the first day being at St. Francis Basilica. Which is the most unfriendly place for disabled people that I know [laughs], because it’s full of steps, very few ramps or anything like that. But no hint of an irony about that at all.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, they’re not expecting many disabled people at that time. I mean, it is for ministers, disability ministers, isn’t it, and they’re coming together to make some recommendations. And our own disability minister in the UK, Stephen Timms, is there at that summit. And hopefully when we speak to him, because we hope to interview him very soon, he’ll tell us a bit more about that conference. I can’t have you on, Kevin, without asking what the challenges are around being a disabled priest?

KEVIN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Steps are a big issue, as you can imagine. Getting around anywhere, whether it’s at home or whether it’s on holiday, and certainly places of pilgrimage because they are ancient places and were not particularly designed, be it 800 years ago or even older than that, with the disabled in mind.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Seeing as you’re on pilgrimage will you say a few prayers for us that the recording goes well this week?

KEVIN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I certainly will. And I really hope it goes well because your programme and other programmes such as those for the visually impaired and so on are just so vital to keep people in touch with what’s on out there. And it keeps the general public aware of the needs of the disabled.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Kevin, sometimes at the end of this little pre-intro bit we say on with the show at the same time, so are you ready to try and make that happen?

KEVIN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Let’s make it happen.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay. I’m going to count us in. Are you ready? One, two, three: on with the show!

MUSIC-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Theme music.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hello, I’m Emma Tracey and this is Access All, the weekly podcast from ³ÉÈË¿ìÊÖ News that does not dance around disability and mental health stuff. No, we do not. In fact we lift them right over our heads and to the top of the leaderboard. Yes, I am a little obsessed with Strictly because there is still a blind man in it, Chris McCausland, at week five, and I am still besides myself with joy about this. I mean, I have no idea, despite the audio description, I still have no idea what he’s doing half the time, but it makes me happy, so there you go.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý This week a new report from the House of Lords looks at the experiences of disabled young people who go from education to work; it’s a tricky one. I’ll be speaking to Elliot Caswell who’s taking the leap at the moment. And I’ll also be getting some tips from an expert who helps people who are autistic and people with learning disabilities into work. Plus I’ll be meeting some of the people featured in the new Netflix film, The Remarkable Life of Ibelin. It tells the story of a disabled gamer whose health kept him at home, but who had a world of friends and activities online, which even his family didn’t suspect until after he died.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We’d like to grow our friendship group, as it happens, so please connect with us on social media. We are @³ÉÈË¿ìÊÖAccessAll on Instagram and X, formerly known as Twitter, or you could send me an email accessall@bbc.co.uk. Or search us up on ³ÉÈË¿ìÊÖ Sounds, Access All, and hit the subscribe button.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Now, we know that moving from education to work can be difficult for anybody, but especially if you are disabled. A new report hot off the press from the House of Lords called Think Work First looks at why it’s so difficult and why, after a decade, the disability employment gap has not narrowed at all. We are still as disabled people 28% less likely to have jobs than non-disabled people. Now, if you are looking for a job stick with me because I will be talking to an expert soon who helps people with learning disabilities and autistic people to find work. But first, let’s meet Elliot Caswell who is right in the thick of this process at the moment. ³ÉÈË¿ìÊÖ cameras have been following Elliot for five years as he moves from education to the big wide world. And his documentary, A Life of My Own is on ³ÉÈË¿ìÊÖ iPlayer now. Here's a clip:

[Clip]

ELLIOT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Crowds cheering] I’m a massive Newcastle United fan. I’m happy mostly with them, especially when they do win. My goal is to be independent in supported living to live with friends and to get a job and contribute to society.

[End of clip]

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Elliot’s journey has had some twists and turns, as you’ll hear. Hi Elliot. You’re a bit of a celebrity now, aren’t you?

ELLIOT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. It’s took a bit of time to sink in.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And your mum, Chris, is there as well to give you a hand if you need it, isn’t she?

CHRIS-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, hi.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You said at the beginning of the documentary that you wanted two things: you wanted to move out of your mum and dad’s house – which you have done; and also that you wanted to work. What would your ideal job be, Elliot?

ELLIOT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý For a job hosting customer services, meet and greet people and to help people. But as there are so limited jobs out there I just feel like I’ll take anything.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And what have you been doing for the past five years since you started thinking about your future after college and after education?

ELLIOT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Going on lots of work placements. It hasn’t happened. A lot of employers have turned me down, looking at a piece of paper, because they haven’t met me properly. It’s partly to do not work placements being opened so much after the COVID pandemic and everything being online. And that’s been a real struggle to get job placements with me. I’m a very positive thinker, trying my best.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What were the work experience placements that you did go on? What were they like?

ELLIOT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I worked in a garden centre doing customer services, but often they were very last minute organised. Services say they’re joined up but they’re not.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, you feel like you’ve fallen down between the cracks?

ELLIOT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I need a place that’s suitable for my wheelchair access needs, and I’ve also got a learning disability.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay. So, do you feel like sometimes people don’t know what to do for you or with you?

ELLIOT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, yes, absolutely. You’ve got that point 100%.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Elliot, what would you like to see for your life in the next five years? What would you like to happen?

ELLIOT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý To get a volunteer job somewhere and a paid job. That would be an extra bonus for me.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You just want to be out and about and meeting people, and doing something that you like?

ELLIOT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Elliot, is it all right if I ask Chris a question?

ELLIOT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, ask her anything.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Chris, you’re Elliot’s mum and you’ve been with him through the whole five years. What would you like to see happen for Elliot?

CHRIS-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý On the job front I think it’s more employers being willing to give him a try or giving anybody with a disability a try. Elliot has hidden skills that we don’t appreciate until you get to know him, and I think it’s that initial oh no, we don’t think we can cope with this. But once you’ve met Elliot and he’s been involved everybody sort of says how brilliant he is and how great he is.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And what would you like to see change in the system?

CHRIS-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý A planned progress to know what’s going to happen, and for it not to be delayed. There’s a lot of delays, a lot of waiting for other people to agree things on your behalf, which makes things very difficult. To be more involved in those agreements and to know when the next step’s coming so you can prepare.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, Elliot I hope things improve for you on the job front.

CHRIS-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you.

ELLIOT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The Think Work First select committee report was written by Baroness Morris of Yardley. She sits in the House of Lords. We asked Baroness Morris what she would say to someone like Elliot who’s driven and well-supported but still feels let down by the system:

BARONESS-ÌýÌýÌýÌýÌýÌý I can understand it, but you also said he’s a person with ambition, wants to get on, wants to do things, and it can happen. He has been let down; we shouldn’t be making it more difficult. So, stay the course. His voice has obviously been heard and I hope action will be taken. The other thing we’ve found is that there’s a whole group of young people out there who think like Elliot, and I hope that he’s managing to join with them because their words and their experiences and their successes actually I think will be part of the pressure that hopefully will make a new government take this very, very seriously indeed.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Stephen Veevers is the CEO of HFT, an organisation that helps people who are autistic or people who have learning disabilities to prepare for employment and to find a job. Stephen, you’re here, you’re very welcome.

STEPHEN-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Good morning, Emma.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Now, you’ve heard Elliot’s story, is it typical of what you see?

STEPHEN-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Unfortunately, Emma, it is. It’s lovely seeing a young man with such ambition and passion and drive still struggling against the system and the lack of infrastructure for someone who clearly, eloquently wants to get a job and wants to contribute to society. Unfortunately that is the norm.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay, so a young disabled person like Elliot comes to you and says, ‘I’ve just come out of the education system, I really, really want to work, help me’ what is the pathway? What happens?

STEPHEN-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Generally the transition services should pick up people between the ages of 18 and 25 and make sure that there’s a smooth pathway through. But what we see is the gatekeeping of access into the supported employment or supported internship is generally via social work practitioners, be those either children’s social workers or adults’ social workers. So, generally we as an organisation and many would have to be referred into by a social work practitioner.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay, so they’ve already told 17 people that they want a job before they get to you?

STEPHEN-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Exactly that. Or potentially there might have been 50 people that want to go through and the local authority might have only commissioned spaces for five or ten people. But when someone like Elliot at age 25 he’s probably tried for years to be able to get through into the system and not been able to do so.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Do people get jobs out of these? Once they get into them and get through these programmes do they get jobs?

STEPHEN-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Where people are fortunate enough to access one of these supported internships and supported employment people have a really, really good success rate of getting a job at the end of it. We ourselves are probably looking at somewhere north of 75%, 80% of our individuals that go through on an annual basis result in them gaining and then – really, really importantly, this is the bit that sometimes gets lost – retaining employment for the longer term.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, how do you work with employers, with those people who you want to recruit the disabled people that you’ve brought through your programme to open them up to employing and then retaining young disabled people?

STEPHEN-ÌýÌýÌýÌýÌýÌýÌýÌýÌý We’ll start with someone like Elliot and say, ‘What do you want to do and what is your skillset? And what do you think you can offer to an employer?’ And then we will go knocking on the door of potential employers. I used an example this morning where I talked about a young man who had absolutely phenomenal analytical and administrative skills on noticing variances. So, he could look at a dataset and Excel spreadsheet and literally pull it apart in a matter of minutes. And then what we’ve done is we worked with an employer to find a really good placement for him, which was Liverpool City Council. They’re a wonderful local government department who sees the benefit of supported employment and have got a really good working relationship with us. We found this young man a role within an adult social care incomes and billings team, and he was able to fly; he was able to do the work of effectively two or three other individuals of breaking down complex spreadsheets, breaking down variances and be able to process things through. He cleared the backlog in something like sort of five or six months.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Wow. And he wouldn’t have got a job otherwise?

STEPHEN-ÌýÌýÌýÌýÌýÌýÌýÌýÌý He had been written off previously as someone who was just going to go into the care system and probably end up, a bit like Elliot, going into something like supported accommodation or residential care. This young man is now on full-time employment, he’s earning, he’s able to go and do what he wants. It’s just opened up his life and his independence into doing what he wants to do. That’s the power of this. But it’s really hard, Emma, it is really, really hard to find employers that want to open their doors.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Now, the House of Lords report made some recommendations and they include getting a plan together to make sure that vocational profiling is happening, and that’s getting to know a young person’s aspirations at an early stage, isn’t it, and then tailoring everything after that. They want better careers advice. And they also want co-production, so they want these programmes to be developed alongside the people who have been through similar programmes, even if they haven’t had a decent result from them. Now, Stephen, are they the right recommendations and do they go far enough?

STEPHEN-ÌýÌýÌýÌýÌýÌýÌýÌýÌý What I really loved about the report it absolutely hooks on supporting the ambition of people with a disability themselves and getting into the workplace. That’s the bit we should hold onto this report: it’s recognising that ambition and supporting it.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We asked Baroness Morris of Yardley, who wrote the report, what changes and timeframe she’ll be asking the government to take on this:

BARONESS-ÌýÌýÌýÌýÌýÌý We’re not going to let go. So, we have the power to monitor the work that the department’s doing. So, on the whole they will respond to our report in December, and we’ve asked that by March next year they come back to us and let us know what progress they’ve made with our recommendations. We know they won’t accept all, but I think this gives a new government a blueprint for a better future for young people like Elliot. I think it’s too good an opportunity not to pursue.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thanks to Stephen and to Elliot. Now, if you want to contact me about this or anything else you can email accessall@bbc.co.uk. And we’re on Instagram and X, formerly known as Twitter, @³ÉÈË¿ìÊÖAccessAll.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Now, when Mats Steen died aged 25 his parents were devastated, and particularly sad that their son had lived what they thought was a lonely and isolated life as a result of progressive condition, Duchenne muscular dystrophy. They posted an update to his blog to notify the handful of followers they assumed he had that he had died. And they thought that was that. Then hundreds of messages flooded in. It turned out that Mats had had a full and vibrant life with friends, and he’d even fallen in love. It had all happened in the world he inhabited while playing the computer game, World of Warcraft. Mats’ popularity online was an astonishing discovery for his parents. And his life story, online and off, is told in a new Netflix film, The Remarkable Life of Ibelin, which is named after Mats’ avatar. I was lucky enough to meet two of Mats’ online best pals, Xenia and her autistic son Mikkel, and you’ll hear that interview in a moment. But first let’s hear from Mats’ parents who had no idea that their son had these online friendships:

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I am delighted to have Mats’ parents, Trude and Robert on the line. Hello to you both. You’re very, very welcome.

ROBERT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you.

TRUDE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hello, hello.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s been a decade since Mats’ death, and how do you feel now that the film is being released, it’s out in the world, your story, your voices, his voice?

ROBERT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s scary that it will now be shown all over the world. But it’s, on the other side, also kind of a happy and relieved feeling. We have been working on this project for four and a half years now.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And what was it like watching it?

TRUDE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Very emotional.

ROBERT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I think the closest thing that you can come to that is it was an emotional rollercoaster: it was sorrow, it was pain, it was laughter, it was happiness, I think it was all kinds of emotions that we can think about.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Sure, because you’re seeing so much of Mats’ life that you knew about, and then so much of it that you didn’t know about at the time. Can you describe Mats to me? Tell me about the boy and the man that you knew and loved.

TRUDE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý He was a very kind and warm person. He cared so much about people around him.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Mats had Duchenne, which is a muscle wasting condition. Only boys get it and it’s life-limiting as well. So, how did that affect Mats as he went through his life?

ROBERT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We remember very well the day we got the diagnosis. He was four years old, it was on 18th May 1993. At that day we were not only given the diagnosis but we were also given a prognosis, telling us how his life would become. He would stop walking at around eight. He would be having problems eating enough at the age of 12. At the same time he would need help for everything in life as this muscle disease took away more and more of his muscles. And in the end this disease would also take away his life. And very few of these boys who were affected back in 1993 lived to become more than 20 years old. All of this was described to us when he was four. And he was the first born, and we were, like all other young parents, looking forward to having lots of children, lots of grandchildren, lots of life around us, and all of this was of course shattered and changed on that date in May 1993.

This is what we saw happen throughout these years, with two exceptions: he lived until he was 25, not 20; and he had a life which consisted of laughter, happiness, joy, curiosity. These things we had no idea could be possible under the conditions that he lived his life. I think it’s only the last ten years when we have been given the chance of trying to understand how his online life was all about that we have understood the reason for his happiness. Because Mats was never lonely; he was never isolated; and he did experience friendship and love and being important in other people’s lives. But he did it on alternative platforms which we were not aware of.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, so you weren’t aware of the extent of his online presence or what he was doing because he was so private.

ROBERT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý To be honest, I think he wanted to invited us into that world, but I don’t think that we, since we didn’t see the strength in those kinds of relationships that he created online, at least I when I was sitting with him for half an hour I thought it was boring. I fled back to the real screen which we call television [laughter], it was also always an exciting football match there, which was more exciting for me.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, you know, I totally understand that as a parent. My children are playing Minecraft and argh, yeah, it’s really dull to me, but very, very exciting to them. So, when Mats died and you had the password to his blog that he kept you went in there and you wrote a really, really difficult final post for, as you thought, a handful of followers. What happened then?

ROBERT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Mats had passed away less than 24 hours before we wrote this blog. We knew that he had been gaming for 20,000 hours the last ten years, and we thought it was the proper thing to do to try to tell the people that he had been gaming with that Mats would not log on anymore. And then we left our email. It took less than one day before we got the first mail back from a woman in Denmark telling about her relationship, friendship with Mats over several years – from a person that we had on idea existed. And that was an extremely emotional experience to have these mails start coming. And a window was starting to open up for us showing us that Mats had an additional experience of his life, day by day, letter by letter, mail by mail.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It must have been incredible. What kinds of things did people say in the emails?

TRUDE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Several of them told us about how he had helped them.

ROBERT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I think it must have been at least 50 different people sharing stories with us. It could be funny stories like this guy in Dublin who said that ‘I have never spent so many hours having fun with anyone in the world as I did with Ibelin’. He had a great sense of humour on one side, and I think he had a very strong understanding of humans. And he used both of these elements in a very active way towards the relationships that he created or established or found. There is a 93 year-old Norwegian who used to be the general secretary of the Red Cross who wrote to us after having seen the movie saying that Mats had a superpower, and the superpower of Mats was that he made the most out of the life he was given. How many of us can say that we made the most out of the life we were given? And then he says that Mats had a secret, and the secret is that he found value out of helping others.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý He kept it a secret, he kept his disability a secret online. Can you understand why he did that?

ROBERT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý In the physical world we tried to invite Mats to go out into society, in a museum, in a park, in a shopping mall, but he didn’t want to do that because, as he said, when I go to these places people are staring. And I think he was afraid of experiencing the same in his sanctuary, which was the gaming world. But having said that, Emma, of his friends that came to the funeral was Anne, from Salisbury outside of London here, and at that time she was 62 and she told me, ‘I have never told anyone how old I am because it’s not only handicap that is not visible in the online world, age is not visible either’. Which means that a 62 year-old woman can be the best of friends with a 25 year-old boy. And then she says, and blinks with her eye, ‘You can imagine what my neighbours would have said if that was in the physical world’ [laughter].

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What would you like the message of the film to be?

ROBERT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý My generation we spent five minutes analysing the online gaming world and we condemned it. And that was a big, big mistake. We showed no respect whatsoever to what was so important for the next generation. The second thing, try to do the most out of the life you have been given, and try to find the secret of helping others. And the third message I think at the core of this message or this story is hope, hope and opportunities. Because if a person like Mats could achieve so much under the conditions that he lived his life, imagine what the rest of us can do.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you so much for speaking to me about Mats and his life. One of the friends Mats made online was Xenia, who at the time was struggling to communicate with her autistic son, Mikkel. Mats, as his online avatar Ibelin, went on to give Xenia some lifechanging advice after she helped him out in a tricky situation in World of Warcraft:

XENIA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I met Ibelin in a game when he was trying to get from one part of the map to the other. So, I killed the things through that area so he could get through without dying anymore. And he told me he had been dying for the past two hours. And from that day on we actually spoke each time either one of us logged in.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And what were your first impressions of Ibelin?

XENIA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It was a good impression, and we spoke and he told me he was a 35 year-old teacher from Norway [laughs].

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You chose to start confiding in him, and you told Ibelin things about your life and about the challenges that you and Mikkel were having with connecting with each other.

XENIA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Ibelin he had told me he was a teacher of special kids, so I asked him, ‘What do you do in Norway?’ and he said, ‘Well, we tell them that find a common interest and go by that’. And in Denmark they are not so keen on you as a parent sitting down and gaming with your kid. I didn’t care because I found it easier to communicate with Mikkel that way. And I talked with Ibelin about that and he said, ‘Well, just do it. If it’s that way you learn to communicate with Mikkel then continue to do it’.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And because you thought he was a special education teacher you totally went for his advice. And it worked?

XENIA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. Me and Mikkel we have connected so well through the gaming.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Mikkel, before you started gaming with your mum what was life like for you?

MIKKEL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Really chaotic. I barely spoke with anyone, and I could barely get my parents to understand my feelings.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And when you started to play the game with your mother what changed?

MIKKEL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That I could talk with her without having to face her. So, I could start on learning to communicate without feeling the pressure of looking respectfully and not make faces that were wrong.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And how did your life change because you were able to start to communicate?

MIKKEL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It made it easy to come to her when I have a problem, and I was starting to feel safe with her.

XENIA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I got a hug [laughs].

MIKKEL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes. I started giving hugs. And after a few years it started to be out of game too.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And do you still give hugs now?

XENIA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes [laughs].

MIKKEL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, every time I’ve over she’s getting a hug.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Have you come to like hugs?

MIKKEL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I do, but I’m really picky with who I’m allowing to touch me. So, it depends on the person; if it’s someone I really like then I’m asking for hugs.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And do you guys still do games together now?

MIKKEL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, we do.

XENIA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, we do still [laughs]. There is also a game that we play with my dad, a little farming game, so he is also playing with his granddad.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That’s amazing. That’s such a…what a result.

MIKKEL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I also learned to speak English from gaming.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Brilliant. And both of your English is fab. Thank you so much Xenia and Mikkel for joining me on Access All.

XENIA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You’re welcome. Thank you for having us.

MIKKEL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Very welcome.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What a legacy Mats has left behind as Ibelin. Thank you to Mats’ parents, Trude and Robert, and thanks to Xenia and Mikkel as well. You can find The Remarkable Life of Ibelin on Netflix right now.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That is it for this week’s Access All. Thank you so much for listening. And if you have anything to say about what we have covered this week please get in touch, I absolutely love to hear from you. Be like father Kevin Crinks and send us a WhatsApp message. Put the word Access first. Our number is 0330 123 9480. Or you can get us on email accessall@bbc.co.uk. Subscribe to us as well on ³ÉÈË¿ìÊÖ Sounds, if you haven’t already, and then you’ll get us every week down onto your device without doing a thing. See you next time. Bye.

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