27th May 2025
bbc.co.uk/accessall
Access All – episode 161
Presented by Emma Tracey
TROY- Hi,
Emma, nice to meet you. My name is Troy and I am 17 years old. I am a pupil at
Fleming Fulton School.
EMMA- Oh,
I can hear that you’re using a communication aid there, and with a lovely
northern Ireland accent. It’s the first communication aid I’ve heard with that
accent so that’s really cool. Now, Troy, we’ve been told by some people on the
email that sometimes our podcast can be a little bit serious and it can be a little
bit bleak because there’s lots of bleak news around in the disability world at
the moment. So, we have decided to start the podcast these days with a really
positive story, and a disabled person doing something really cool and upbeat.
So, Troy, what have you been up to?
TROY- At
school I’m on the student council and a member of the Makaton choir. Makaton is
a language programme used to communicate where you speak and sign at the same
time. I suggested to the student council that our Makaton choir could up
with Belfast Boys’ Model School choir, a local mainstream school near my house.
My uncle is a teacher there. Everyone thought this was a great idea. Natalie
and I we went to Boys’ Model to teach them two songs using Makaton. We
practised together and then we went to their school to perform in their concert
[music and clapping].
EMMA- That
sounds like massive fun. And Natalie, who you mentioned, is your speech and
language therapist. Now, my favourite fact maybe in the whole world is that
Makaton stands for Margaret Katherine and Tony who created this method of
g, Makaton. I think that’s very, very, very, very cool.
Now,
Troy, I’ve also heard that you’ve been doing your Duke of Edinburgh Award
recently. What’s that involved?
TROY- I
am currently completing my bronze Duke of Edinburgh. It is made up of four
parts: Part one is skill; we’re making Christmas crafts to sell and raise money
for school. Part 2 is physical; I am attending a circus group. Part 3 is
volunteering; we’re improving our school by gardening, litter picking,
painting, running a tuck shop and creating new noticeboards. The final part is
our expedition; we had a two-day expedition around Belfast the docks, Titanic
area and lots more. It was great fun but I am exhausted.
EMMA- Wow,
that sounds amazing. Do you know what, there’s so much, Troy, that I’d love to
talk to you about, but this is our little positive bit at the start of the show
so I’m going to leave it there while we’re on a high. Thank you so much for
ing me to Troy.
TROY- Thanks
for chatting with me and letting me show you how I communicate. It was nice to
meet you.
EMMA- Bye.
TROY- Bye.
EMMA- Dave,
hit the music.
MUSIC- Theme
music.
EMMA- Hello,
I’m Emma Tracey and this is Access All, the BBC’s weekly disability and mental
health podcast. You can email us on this episode or any of our other ones, accessall@bbc.co.uk. And if you haven’t
already done so please do subscribe to us, Access All on BBC Sounds.
Now,
later I speak to Guardian columnist, s Ryan about her book, Who Wants
Normal? The Disabled Girls’ Guide to Life. Now, it’s part memoire, but it’s
also full of stories and life advice from over 70 disabled women. Yes! But
first, we’ve got an exclusive interview with Adolescence writer Jack Thorne.
Jack has signed a letter, along with over 100 other disabled people, asking the
government to stop planned cuts to disability benefits. Jack, hello, thank you
for ing me.
JACK- Thank
you for having me on, Emma.
EMMA- Jack,
summarise the letter for me. What does it say?
JACK- Well,
it’s basically a group of people from the disabled community just saying enough
is enough. The challenges that this government and previous governments have
placed in front of the disabled community have been huge. And these latest
changes to PIP are both wrong and dangerous, and we need to be challenging them
as a society to prevent people being left in severe hardship by this.
EMMA- Planned
changes to Personal Independence Payments of course include the fact that
people, to get the standard rate, will need to get four points on one activity,
rather than getting those four points across different activities. And people
feel that that will affect people with certain disabilities more than others.
And why have you specifically put your name to the letter?
JACK- Ah,
because I feel very ionately about it. What they’re talking about in
of changing the rules as to how you get PIP could leave disabled people in
quite severe poverty. It is very expensive, as you know, being a disabled
person. There was a Scope report that said it costs £1,010 a month extra to be
a disabled person in this country. It is expensive. But these people that we’re
dismissing contribute so vitally to our country, and we need to be ing
them. And the extra payments are required, are necessary for people to have any
quality of life. And they’re doing this in a similar way to the winter fuel
payments, seemingly without much thought because they’re worried about
disability benefits rising. They’re worried about all these different things,
but the answer to that is not to kick the people who are suffering the most;
the answer to that is to work out new ways to get people back into work. And
let’s not get started on Access to Work, which is, as you know, a mess.
EMMA- Well,
we will be talking about Access to Work quite a lot more in the future on
Access All. But Jack, the government says that it’s about getting people back
into work, that it’s healthy, work is healthy, that it’s aspirational, and that
they will provide help for people who need it. That’s good, isn’t it?
JACK- That’s
very good. I don’t see that being backed up by any suggestion as to how they’re
helping people get back to work. And I don’t think helping people getting back
to work will be possible without Access to Work changing quite considerably
from the situation it is now. I think there’s 55,000 people on waiting lists at
the moment for Access to Work payments, so it's pretty extraordinary how bad
that is.
EMMA- And
just to say, that’s the government’s scheme which provides money for disabled
people that is intended to cover the extra cost of having a job when you’re
disabled.
JACK- But
also these payments are about challenging the notion of what disability is.
That what they’re saying with this PIP stuff in of all your qualifying
points need to have come from one disability rather than a range of
disabilities, it’s just a challenge as to what disability is, and it’s
completely wrong. They’ve just got this one so wrong, and I don’t think it’s
been done with enough consultation with the disabled community. And I think if
they did consult meaningfully they would discover what they need to do here,
and it’s not this.
EMMA- There
is a consultation ongoing. As you say, Personal Independence Payments and
Universal Credit payments are not included in that consultation. But changes
around the PIP assessment and around Access to Work are, and that consultation
ends on 30th June.
Jack,
you’ve said you feel really strongly about this. Some people won’t know your
connections with disability, so is it okay to tell the people listening your
connections?
JACK- Absolutely.
So, I was very disabled in my 20s. I had a condition called cholinergic
urticaria which is an allergy to heat, which left me bedbound for six months
because every time I moved I was having an allergic reaction to my body. That
has since improved. I am an autistic man. But more than that I’ve spent my life
in and around the disabled community and making shows, both theatre, TV around
disability. And I think the way we treat disabled people in this country has
become increasingly problematic. What was done during COVID in of the
lack of for disabled people I think just showed a country that is
ableist. And this is part of a long line of government taking ableist measures
that do immense damage, and we need to be challenging it.
EMMA- Well,
the government would say that they need to save £5 billion across the benefits,
including Personal Independence Payments and Universal Credit, and they feel
that these changes will help people back into work, and they say that they’re
offering specific help for people who want to do that. And what do you hope the
letter and the campaign will achieve?
JACK- I
hope it will change the law. I hope it will change this law coming in. I hope
it will change the way that PIP is going to be calculated. It needs to because
this is just wrong.
EMMA- I
think that it’s relevant and important to talk about Adolescence in relation to
this, as one of your massive hits this year. It follows a young 13 year-old boy
accused of murder and the investigations into that, which bring up the fact
that his views on women informed by the so-called manosphere, it launched
national debates around social media use and online use. And you actually met
Keir Starmer who was engaged with that. Do you think he’ll engage with this?
JACK- I
hope so. It’s been amazing Adolescence having the impact it has had, and we’re
still all reeling from it in truth. I’ve made a whole number of shows that I
hoped would lead to conversations nationally about stuff, because that’s what
we all do, that’s what we’re feeing the fire with, feeding the fire of society.
Shows like Help and Then Barbara Met Alan, which were specifically looking at
the disabled community and the treatment of disability, and Don’t Take My Baby
and Cast Offs, which helped hopefully to a conversation about care workers.
With Then Barbara Met Alan I hoped it would lead to where we’re at with
disability rights, because it hasn’t happened in the way that Barbara and Alan
fought for it to happen. I don’t know that this will necessarily get Keir
Starmer around the table again. He was very sincere and he was very interested
in Adolescence, and I’m really, really grateful for that. And I think he needs
to be as interested in this.
EMMA- And
have you seen any change or difference since you met Keir Starmer?
JACK- Not
yet, but it is a gradual process and there are people engaging all over the
place. I mean, the Women and Equalities Select Committee have now launched an
investigation into the manosphere, which I think will hopefully lead to a great
change. And there are a group of Labour MPs who are pushing very hard for
legislative change to protect people from the internet, and I hope that will
lead to change too.
EMMA- And
you talked about all the work that you’ve done with disabled people in the
creative industry and the dramas that you’ve made around disability. What
impact do you believe that the planned cuts will have on maybe you, but maybe
people you know and people you work with?
JACK- I
think they’ll have a huge impact. I’m aware of friends of mine that are really
struggling right now. And it makes me incredibly angry that talented brilliant
people are being denied the that they need in order to lead a
reasonable quality of life. And I don’t understand why I live in a country now
where we punch down quite as much as we do, and it worries me about the future
direction of travel.
EMMA- As
hard as it as, and as bleak as many disabled people feel, would it inspire
another drama from you, Jack, this situation and what’s happening?
JACK- Oh,
I don’t know. I’m really pleased that there are disabled voices arriving on
television, like Kyla Harris, like Billy Mager, who are telling authentic
interesting disabled stories. And I think there was a period when I was the
only one being allowed the pen, and it makes me very happy that that pen is now
being shared with people that are much better and cleverer than I am and can
talk authentically about their disabled experience and share their stories with
the country.
EMMA- We
put the contents of the letter and what Jack told us to the Department of Work
and Pensions. And a government spokesperson told us:
DWP- We
are determined to people in all parts of the country by tackling
poverty and creating secure, well-paid jobs. PIP is a part of the way that we
disabled people and people with long-term health conditions. But with
the number of people claiming PIP doubling since the pandemic it's right that
we rebalance the system to ensure is targeted to those who need it
most. Alongside this, as part of our plan for change, we’ve increased the
national living wage, uprated benefits and are helping over one million
households by introducing a fairer payment rate on Universal Credit deductions.
EMMA- The
two people Jack talked about at the end there are deaf and disabled
screenwriters. William Mager wrote Reunion and Kyla Harris wrote We Might
Regret This. Both were on BBC TV recently and they’re still available to watch
on iPlayer. Thank you to Jack Thorne for that exclusive interview there. And
you can read about it also on the BBC News website.
Based
on timings and the government’s wish to get this through parliament we’re
expecting the vote to happen any week now. And the government are currently
holding a consultation on some of the planned benefit changes, and that closes
on 30th June. Also if you want to hear what Minister of State for Social
Security and Disability, Stephen Timms thinks about the plans we have an
episode on that too, which you can find by searching up Access All on BBC
Sounds.
MUSIC- We’re
not just a podcast. Find Access All on social media, and read our articles on
the BBC News website.
EMMA- My
guest this time is journalist and author, Dr s Ryan. For the past decade
s has been a columnist and reporter with The Guardian, focusing often on
disabled people’s struggles. But her work has popped up elsewhere too. An
interview she did with Labour’s Angela Rayner was on the cover of British
Vogue. And s has a new book out, which seems like a grand excuse to me to
get her in for a chat. Hi, s.
S- Hello,
lovely to speak to you. I feel like I’ve been listening to you on the podcast
for ages, so it’s so nice to be here.
EMMA- Listen,
Who Wants Normal? The Disabled Girls’ Guide to Life, how would you describe the
book, s?
S- So,
the book is really my love letter, if you like, to disabled women and disabled
people generally. I wanted to shine a spotlight on the kind of everyday things
that everyone goes through in life but just aren’t often looked at from the
disabled perspective. And to do that I talked about my own experiences, but I
also invited over 50 of Britain’s best known, fantastic disabled women and
non-binary people to share their personal experiences.
EMMA- What
were some of the things that maybe surprised you or interested you that so many
of the women that you spoke to and the non-binary people that you spoke to
said?
S- The
idea that we’re all dealing with these really low expectations in life that
people often have of us, that your life’s going to be really rubbish
essentially, miserable and tragic. And that actually, as the book shows, there
are so many incredible experiences, but society often says that that isn’t
going to happen to you because you’re disabled.
EMMA- I
mean, one of the stories that you tell in your book is about the time you went
to the pub and got the flu.
S- I
think anyone who has ever come down with a chronic illness or any sort of
long-term condition really knows that there’s no kind of long build-up; it’s
just completely random. And for me it was a post-viral illness that I got from
flu in the pub on top of the muscle weakness that I have from birth. So, I
think that’s the issue, isn’t it, it’s just completely mundane and ordinary and
then your life kind of changes. I think that’s something that most of us can
identify with: we’re either born with our disability or we acquire it in later
life. But whatever it is there’s no instruction manual that comes with it,
there’s no blueprint; it’s just something entirely random that happens to your
life and then you deal with it, don’t you.
EMMA- And
you managed to do both: you managed to be born with a disability and then
acquire an illness.
S- All
right, Emma, I concede that, okay [laughter].
EMMA- You’re
talking about the weeks and months after the flu and that change to your
situation and just being more ill and more fatigued than ever before. For
someone who’s listening to this and who might not have the energy at the moment
to read a book what could you tell them about that?
S- I
was really conscious of that that if you’re in pain or you’re fatigued or
whatever the issue, it’s sometimes really hard to access books because it can
feel so overwhelming. And it was kind of similar for me writing it that it took
me four years to do. And I just wrote it in really small bits, like on my phone
in bed, when I felt up to it. And I guess for people reading who had switched
off from books I try to share bits of it on my social media in picture form, on
Instagram and X and Bluesky, that do want to have a little bit of a book but
aren’t manage to have the whole thing. I wrote it in deliberate sections so
it’s easy to just read a couple of pages.
EMMA- And
if someone was to read one section of the book, which one would you start with?
S- I
think it would depend what mood I was in. If I was looking for something quite
hard-hitting I’d read the healthcare chapter because it kind of outlines the
prejudice and inequality that a lot of us face whilst accessing healthcare. And
also some top tips from patient advocates and medics on how to get better
treatment options. But if it was something more light-hearted I would go
straight probably to the relationships chapter.
EMMA- Tell
me about Rosie Jones, because she’s an interesting one, a gay women on dating
apps. What stories did she tell you?
S- Rosie’s
experience was when she used to be on the apps she didn’t know whether or not
to disclose that she has a disability. And she thought it was kind of like she
was cat fishing if she didn’t say anything, but if she did say something she’d
get no matches at all. And I think that’s an experience that a lot of people
can identify with, isn’t it?
EMMA- Absolutely.
S- And
I think one thing that I really loved about getting all the different anecdotes
together from so many different people was that you get the cross-section, you
get the dating nightmares, the app stuff, but you also get the lovely stuff of
people that had found someone who are perfect for them. And, as I say in the
book, you can’t promise that you’ll find the right person, just like a
non-disabled person can’t; but you can promise that actually the right person
won’t care at all about how you move, how you talk, what you need. The right
person will just care whether or not you laugh at their jokes and you’re nice
to them.
EMMA- Yeah.
And it’s nice to hear people’s happy endings as well.
S- Yeah.
EMMA- People
like Jameela Jamil talked about sex, you even went there, s. I thought it
was great what she said about sex and sexual positions.
S- Yeah,
there’s a special section on sex. It isn’t what I’d normally write about. You
know, I write about Westminster policy most days. But I did it because sex is
one of those taboos that people think it’s so unrelated to disability, so it
felt really important to explicitly say this is something that disabled people
care about too, just like anybody else, and we struggle at. And for Jameela it
was because of her Ehlers-Danlos Syndrome, that means that she’s always dated
blokes who just like hanging out, relaxing around the house and would never
pressurise her into doing anything physically that would hurt her. And as she
said in the book, ‘And I would never do the same to them’, and that’s always
allowed her to set those boundaries.
EMMA- So,
never do any positions that someone wants you to do if it’s actually going to
hurt your body, if they want to make you do that then they’re not the right
person for you.
S- Yeah,
absolutely. The sex section looks about sex in so many different ways. It looks
at things like accessible vibrators for example, the wonderful things that now
exist that means if you can’t, for example, have dexterity with your hands
there are different options for that sort of self-pleasure. And really lifting
that taboo and saying that you deserve to have access to that, and just because
at school no one taught you that and just because large sections of the media
tell you that you aren’t involved in this part of life, if you want to be there
are absolutely options for you. And here are some brilliant women talking about
their lives and what they do.
EMMA- Yeah.
I just want to make it very clear that we’re moving on from sex now when we
talk about this. A big theme in your book is that disabled women get a rougher
deal than most other groups, even let’s say disabled men.
S- I
don’t think I do believe that disabled men have an easier deal, so to speak. I
think it’s simply that because we’re women too we have to deal with two things:
we have to deal with the ableism and we also have to deal with the sexism and
misogyny too. So, it’s not that we’re discriminated against more based on our
disability per se I think; I think it’s that we’re also dealing with all this
extra stuff as well. Similarly in the sense that a black man who’s disabled
will also be dealing with racism as well, in the way that I as a white woman
won’t.
EMMA- I
mean, in the case of Ehlers-Danlos Syndrome there is a stat that says men are
diagnosed years earlier than women; women have to wait years longer than men
for a diagnosis. Cherylee Houston, who’s been in Coronation Street, a really
famous disabled actor, had a massive story around healthcare, didn’t she?
S- I
think most of us have come across some pretty awful treatment in healthcare at
some point in our life. But Cherylee she shared a story about she’d been in
pain since she was about nine years old, and nobody in the medical professional
believed her, to the extent that when she was university in Manchester she went
to a consultant and she thought now I’m in a big city maybe they’ll have enough
staff to actually believe me. And he just completely mocked her and told her
that she wanted to be, in his words, handicapped to get attention. And it was just
the most horrific thing to hear, but at the same time when you look at the
statistics that I share in the book, though that’s an extreme example, it’s not
particularly uncommon I don’t think that level of disbelief. Because I think we
all know as women and we all know as disabled people that you’re simply not
given the credit and autonomy and control over your life that other people are
a lot of the time. People talk to you like you’re daft, like you’re a child,
like you’re a complainer, in a way that you just don’t get if you present as a
white non-disabled male a lot of the time. But again, I think one of the things
that I tried to really do in the book wasn’t just to list a load of problems,
but was to kind of bring in experts and to talk about okay, this is absolutely
awful, we can’t accept this and it isn’t our responsibility as individuals to
fix it, but in the meantime what are these things, what are these resources we
can share within the disabled community to say what can we actually do right
now to help each other.
EMMA- And
what can we do in of healthcare then?
S- How
to get the best out of a medical appointment, taking a friend or a family
member with you to make sure that you’ve got a bit of . Maybe practise
in advance those phrases that you want to use. We lead with emotions as human
beings, but doctors often just care about the practical stuff, so rather than
saying something like, ‘I’m really upset because of how much pain I’m in’ using
a sentence like, ‘Being in so much pain means I’m not able to get dressed
several days a week, what can you do to help me with that?’ those sort of
practical phrases, and ‘What is your plan for helping me with this?’ can be
really useful.
EMMA- That’s
amazing. One of the big things we like to talk about on Access All is wellbeing
and mental health of disabled people, people with health conditions. You spoke
to some amazing experts in the book about that, but you also had your own
advice to give, didn’t you?
S- Self-care
and the wellness industry is a huge issue now, isn’t it? Like, you put on
Instagram and there’s someone else offering you this amazing cold swimming you
can do or this park run. And that’s fantastic, if you can do that and it’s
great for you do it. But for those of us that are excluded from that stuff it
just kind of feels bad I think that I’m struggling, but even the things that
you’re offering me to do to help me feel better I can’t do. And funnily enough
that makes me feel even worse. What can we do that’s actually suitable for us
was a huge part of it. And I’m so glad that you liked those nuggets, because
they sound little things but actually if you add them all up and find some
things in your day-to-day life that you can do, no matter what your body or
mind is doing that day, that’s a huge thing to have in your back pocket, isn’t
it?
EMMA- Absolutely.
Thank you so much, s Ryan. We’ve done this over two days in two sections.
I’ve pushed my time limits and you told me your energy limits, and I’m really,
really grateful. And thank you so much for speaking to me on Access All.
S- Thank
you for having me, it’s been lovely.
EMMA- That
is it for this episode. It just remains for me to thank s Ryan for that
super interesting chat, and also thank you to Jack Thorne for speaking to us
exclusively earlier about that letter asking the government to stop planned
cuts to disability benefits. If you have thoughts on this week’s episode please
to get in touch with us. Our email is accessall@bbc.co.uk,
or you can send me a WhatsApp message, 0330 123 9480. We are on social media,
Instagram and X @BBCAccessAll. See you next time. Bye.
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