15th October 2024
bbc.co.uk/accessall
Access All – episode 129
Presented by Emma Tracey
EMMA- Father
Kevin Crinks, you’re a priest and you ed us and you’re on the line.
Hello.
KEVIN- 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.
EMMA- 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- 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- 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- 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- Seeing
as you’re on pilgrimage will you say a few prayers for us that the recording
goes well this week?
KEVIN- 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- 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- Let’s
make it happen.
EMMA- Okay.
I’m going to count us in. Are you ready? One, two, three: on with the show!
MUSIC- Theme
music.
EMMA- Hello,
I’m Emma Tracey and this is Access All, the weekly podcast from BBC 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.
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.
We’d
like to grow our friendship group, as it happens, so please connect with us on
social media. We are @BBCAccessAll on Instagram and X, formerly known as
Twitter, or you could send me an email accessall@bbc.co.uk.
Or search us up on BBC Sounds, Access All, and hit the subscribe button.
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. BBC 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 BBC iPlayer now. Here's a clip:
[Clip]
ELLIOT- [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 ed living to live with
friends and to get a job and contribute to society.
[End of clip]
EMMA- 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- Yeah.
It’s took a bit of time to sink in.
EMMA- And
your mum, Chris, is there as well to give you a hand if you need it, isn’t she?
CHRIS- Yes,
hi.
EMMA- 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- 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- And
what have you been doing for the past five years since you started thinking
about your future after college and after education?
ELLIOT- 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- What
were the work experience placements that you did go on? What were they like?
ELLIOT- I
worked in a garden centre doing customer services, but often they were very
last minute organised. Services say they’re ed up but they’re not.
EMMA- So,
you feel like you’ve fallen down between the cracks?
ELLIOT- I
need a place that’s suitable for my wheelchair access needs, and I’ve also got
a learning disability.
EMMA- Okay.
So, do you feel like sometimes people don’t know what to do for you or with
you?
ELLIOT- Yes,
yes, absolutely. You’ve got that point 100%.
EMMA- Elliot,
what would you like to see for your life in the next five years? What would you
like to happen?
ELLIOT- To
get a volunteer job somewhere and a paid job. That would be an extra bonus for
me.
EMMA- You
just want to be out and about and meeting people, and doing something that you
like?
ELLIOT- Yes.
EMMA- Elliot,
is it all right if I ask Chris a question?
ELLIOT- Yes,
ask her anything.
EMMA- 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- 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- And
what would you like to see change in the system?
CHRIS- 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- Well,
Elliot I hope things improve for you on the job front.
CHRIS- Thank
you.
ELLIOT- Thank
you.
EMMA- 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-ed but still
feels let down by the system:
BARONESS- 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 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- 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- Good
morning, Emma.
EMMA- Now,
you’ve heard Elliot’s story, is it typical of what you see?
STEPHEN- Unfortunately,
Emma, it is. It’s lovely seeing a young man with such ambition and ion 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- 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- 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 ed employment or ed 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- Okay,
so they’ve already told 17 people that they want a job before they get to you?
STEPHEN- 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- Do
people get jobs out of these? Once they get into them and get through these
programmes do they get jobs?
STEPHEN- Where
people are fortunate enough to access one of these ed internships and
ed 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- 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- 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 istrative 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 ed
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 back
something like sort of five or six months.
EMMA- Wow.
And he wouldn’t have got a job otherwise?
STEPHEN- 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
ed 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- 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- What
I really loved about the report it absolutely hooks on ing 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
ing it.
EMMA- 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- 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- Thanks
to Stephen and to Elliot. Now, if you want to me about this or anything
else you can email accessall@bbc.co.uk.
And we’re on Instagram and X, formerly known as Twitter, @BBCAccessAll.
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:
I
am delighted to have Mats’ parents, Trude and Robert on the line. Hello to you
both. You’re very, very welcome.
ROBERT- Thank
you.
TRUDE- Hello,
hello.
EMMA- 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- 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- And
what was it like watching it?
TRUDE- Very
emotional.
ROBERT- 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- 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- He
was a very kind and warm person. He cared so much about people around him.
EMMA- 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- We
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- Yes,
so you weren’t aware of the extent of his online presence or what he was doing
because he was so private.
ROBERT- 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- 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 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- Mats
had ed 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- It
must have been incredible. What kinds of things did people say in the emails?
TRUDE- Several
of them told us about how he had helped them.
ROBERT- 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- He
kept it a secret, he kept his disability a secret online. Can you understand
why he did that?
ROBERT- 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- What
would you like the message of the film to be?
ROBERT- 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- 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- 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- And
what were your first impressions of Ibelin?
XENIA- It
was a good impression, and we spoke and he told me he was a 35 year-old teacher
from Norway [laughs].
EMMA- 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- 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- And
because you thought he was a special education teacher you totally went for his
advice. And it worked?
XENIA- Yeah.
Me and Mikkel we have connected so well through the gaming.
EMMA- Mikkel,
before you started gaming with your mum what was life like for you?
MIKKEL- Really
chaotic. I barely spoke with anyone, and I could barely get my parents to
understand my feelings.
EMMA- And
when you started to play the game with your mother what changed?
MIKKEL- 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- And
how did your life change because you were able to start to communicate?
MIKKEL- It
made it easy to come to her when I have a problem, and I was starting to feel
safe with her.
XENIA- I
got a hug [laughs].
MIKKEL- Yes.
I started giving hugs. And after a few years it started to be out of game too.
EMMA- And
do you still give hugs now?
XENIA- Yes
[laughs].
MIKKEL- Yes,
every time I’ve over she’s getting a hug.
EMMA- Have
you come to like hugs?
MIKKEL- 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- And
do you guys still do games together now?
MIKKEL- Yeah,
we do.
XENIA- 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- That’s
amazing. That’s such a…what a result.
MIKKEL- I
also learned to speak English from gaming.
EMMA- Brilliant.
And both of your English is fab. Thank you so much Xenia and Mikkel for ing
me on Access All.
XENIA- You’re
welcome. Thank you for having us.
MIKKEL- Very
welcome.
EMMA- 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.
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 BBC 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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