8th January 2024
bbc.co.uk/accessall
Access All – episode 85
Presented by Nikki Fox and
Emma Tracey
EMMA- I
am going to give you lovely lot a little lesson on braille, okay. Think of a
dice and think of the six on a dice, and you’ve got two dots at the top, two
tops in the middle, and two dots at the bottom, so that’s six dots. And that’s
the way a braille cell works; that’s the way each character in braille is a
combination of those six dots, okay. So, the top left dot, that’s an A, or a
one if you put another symbol before it, just to make it complicated. If you
put another dot, the one in the middle on the left down beside it, that is a B,
okay. And if you just put all six dots down together it is not a C, it is not a
Z, it is actually the word for, F-O-R. I love to use my really old Perkins,
which is like a typewriter type thing; it's metal and it’s plastic and it’s
heavy and it crunches the dots out onto paper using pins that make little holes
in the paper. And you might think that that’s really, really primitive, but
actually they’ve brought in lots of new technology which means that you can
read it on your computer. I’ve got braille in front of me right now, that’s
what I use to help me read my script. It’s electronic braille. And it can be
really modern and really helpful, as young Eryn in Northern Ireland told us on
the news this week:
[Clip]
ERYN- It’s
made a big difference in my life because without it I wouldn’t be able to read,
I wouldn’t be able to write, I really wouldn’t be able to do much. But I can
still access braille in hard copy and I have a selection on books on this
device.
[End of clip]
EMMA- She
loves braille. I’m so pleased. And it’s so nice to hear really young people
coming up and talking about braille, because I am a huge braille fan and a huge
braille advocate; it’s so, so helpful. It’s on medicine packaging; it’s on all
of my spices, so I get the brailler out and I braille all of those, so I don’t
have to use any technology in the middle, I can just put my fingers down and
know whether I’m using cinnamon or paprika, because it’s kind of good to know
the difference between those two. So, the reason I’m talking about braille
today is that it is 200 years since Louis Braille invented braille. And he was
only 15 when he did it. Louis Braille lived in the 1800s and he is a legend.
I’m very pleased with Louis for doing that for me. It’s changed my life. And
only 10% of blind people read braille, for various reasons. And lots of people
think that blind people don’t need braille because we can listen to audio books
and screen reading software etc etc. But you cannae beat having the dots under
your fingers and being able to get from finger to brain.
MUSIC- Theme
music.
EMMA- This
is Access All, a weekly podcast from the BBC about disability and mental
health. I’m Emma Tracey and I’m in Edinburgh. And on this week’s show: people with
ADHD can be impulsive and they can easily lose things as well. It means they
sometimes end up spending more money than your average person; and this is
known in the ADHD community as the ADHD tax, and we’re going to be talking
about that a little bit later on.
Former
Paralympian and convicted murderer, Oscar Pistorius, has left prison. We’ll be
speaking to our correspondent in South Africa to see what people are saying
locally.
And
you will get your Nikki Fox fix later when Nikki and I interview Ella Glendining,
a documentary maker who went about finding someone with the same extremely rare
impairment that she has. Did she find them? And did she get to talk to them?
And how did it feel? We’ll find out later on.
And
if you’re listening on 5 Live and only catch us from time to time, I invite you
to make a permanent connection with us, because we are a podcast. You can
subscribe to us on BBC Sounds or wherever you get your podcasts from. Why not
our club?
The
weeks after Christmas can be tricky for all of us when it comes to managing our
finances. But for many disabled people it can be a never-ending experience of
extra cost. I’m blind and I do things like take more taxis, which is more
expensive for me. But one group that I hadn’t really considered were people
with ADHD. So, they might have poor attention to detail when filling out forms,
might lose things and break things. And that extra cost associated with those
things is known in the community as the ADHD tax. And here to give us their take
on how the ADHD tax has affected is Rach Idowu. Rach was diagnosed back in 2020
at the age of 26, and they’re behind the successful newsletter Adulting with
ADHD. Rach how many thousands of pounds do you reckon that you’ve lost because
of your ADHD?
RACH- Oh,
this is a painful question. But I would estimate around – to caveat I am
turning 30 so this is over a lifetime – I would say over around £4,000 probably
on ADHD tax unfortunately.
EMMA- Right,
£4,000. And what kinds of things was that on?
RACH- I
would say one was getting a credit card and not reading the and
conditions, so again the lack of attention to detail, and not realising how
much interest I would have to pay them back.
EMMA- Wow.
Our producer Alex has ADHD and he was telling me that he’s lost countless
earbuds and can’t manage with wired earphones, and has also lost lots and lots
of pairs of glasses, probably, like, ten pairs. What sorts of things have you
lost? Or is that something that happens to you as well?
RACH- Yes,
I feel his pain. From keys to bus es. I used to lose my bank card quite a
lot, surprisingly, to the point where I tried to order another one and my bank
told me I can’t get another one because it’s suspicious that I keep on losing
my cards and requesting a new one. So, I actually have to go down to my local
branch with my port and ID to show them that it is me, and explain why I
kept on losing my cards. And it’s simply because I didn’t have a wallet; I
would just have my card in a pocket.
EMMA- Yeah.
Another issue is impulse spending.
RACH- I
think I have such shiny object syndrome, so I see something, I like it, and I
want to try it out. So, this could be like a new hobby idea or an interest, and
I go on the good old Amazon and I just buy a bunch of things that I clearly
don’t need. And then when it gets there it sits in a box or I try it out and I
don’t return it. And that’s where I’d say a lot of the ADHD tax derives from is
ordering things, not using them or it doesn’t fit, and I don’t return it
because it’s so mentally taxing to fill out the forms, go to the post office
and package it up and return it. So, yeah, that’s the impulsive purchasing.
EMMA- And
how does all this affect you emotionally, all this hassle, , cost? What
sort of effect does it have on your mental health?
RACH- I
would say firstly the physical space, clutter. So, having a cluttered
environment can be quite demotivating. It can cloud your thinking when you
don’t have a clear space. So, I would say that has been an issue for me. And
then mentally it’s feeling like the guilt and shame and feeling like a failure
because not being able to have this under control. So, it can be quite
disheartening when you’re continuously doing something as a result of the
condition that I have, but then not being able to come up with immediate
solutions. So, that’s something I’ve struggled with over time. But again I’ve
found a few workarounds.
EMMA- With
me also is Professor Amanda Kirby from the University of South Wales. And she’s
also chair of the ADHD Foundation which advocates for people with ADHD. Hi,
Amanda. Thank you for ing me.
AMANDA- Hi,
thank you for inviting me.
EMMA- Oh,
you’re very welcome. You’ve been listening to Rach and you’ve been hearing her
story. Why do so many people struggle with this who have ADHD?
AMANDA- So,
ADHD is the impulsivity, it’s often the prevarication: so I know I need to send
this stuff back but I just can’t get organised to box it up and send it. It’s
the impulsivity of I like the shiny, I like that. And Instagram and Amazon, and
we have a card that you just tap, there’s not cash that you’re spending, so
that you’re not feeling that you’re spending money – that’s often a difficulty
because we don’t carry cash around – so it’s often very easy and quick to make
those impulsive purchases which really cost a lot of money, and also wound you
at the end of it when it doesn’t work, you don’t want it, but you don’t have
the planning to send it back and organise yourself. So, it covers a lot of
different areas really.
EMMA- And
what about dopamine levels?
AMANDA- Well,
that’s the hit. So, why we make those purchases, and if you’ve ever gone and
bought yourself something new and it gives you a lift, often we have a lack of
dopamine that’s driving some of this behaviour that’s allowing us to make those
impulsive purchases, gives you a quick hit, but then it’s not got that lasting
impact. The other thing about it is not just hidden taxes in of buying
things, also we’re losing things or having accidents, we’ve heard that. I
dropped my port the other day inadvertently when I was coming back from
somewhere, and you think cash, key things, keys, things that are costly to
replace time-wise but also money. And we’re more likely to have more accidents
as well. So, all of those things a real pervasive impact on day-to-day living.
EMMA- So,
let’s go onto solutions now I think would be a good idea. And I’m told that
banks are starting to think a lot about this. Is that right, Amanda?
AMANDA- That’s
right. So, some of the banks are really thinking about how do we make sure
we’re putting money away, we’re squirreling money away in different pockets so
we don’t just spend everything on something shiny and then realise we don’t
have enough for bills. So, you can segregate your savings quite effectively and
they say, do you want to put this amount of money into this particular bit so
you’ve got a rainy day fund; or you’re putting money in your taxes or you’re
putting money into saving for something. So, they can put it into the separate
pockets, and they’ll prompt you to do that. So, that’s quite useful.
And
then things like with direct debits, we’ve heard direct debits can really make
a difference that we make sure that the payments of the things that you have to
pay is automatically done, so we’re not having to think about it. And that
really helps quite a lot.
And
then I think not having the shiny opportunities, so maybe not linking your
cards to Apple Pay that you can quickly click and spend may just give you a
couple of minutes to go, should I do that.
EMMA- Yeah,
a bit of breathing space.
AMANDA- Exactly.
That can help quite a lot as well.
EMMA- We
spoke to Monzo Bank and we spoke to Natalie Ledward there who’s the head of
vulnerability, access and inclusion, and we asked her what they’re doing:
[Clip]
NATALIE- Monzo
is designed to give people clear visibility over their spending behaviour. So,
to highlight a few features: instant notifications, they show in real time
where your money is going. Spending categories prevent impulse spending by
creating limits in specific areas. And Pots is a great budgeting tool because
money spent comes out of a particular pot rather than your overall balance, for
example bills.
[End of clip]
EMMA- Rach,
you’ve been listening to that message and to what Amanda was saying about other
banks. You’ve had some tricky relationships with banks in the past; do you
think they’re doing better nowadays?
RACH- So,
one of the things that I should mention that I struggle with when it comes to
ADHD tax is subscribing to so many different things to try it out for, let’s
say, a one-month free trial period, and then forgetting to cancel or just not
being aware of when the money leaves my . And I find that it’s just
visually pleasing in of the app. It’s almost for me like a financial
planning because you have the different categories and you can, kind of, keep
on top of your spending. It’s just easy for me to find things.
EMMA- So,
visually at a glance you can just look and say, right that’s that, oh that came
out. Visual ways of looking at something really quickly are they useful when it
comes to managing stuff around ADHD?
RACH- Yes
to me. If I’m not interested or excited at something I’m looking at my brain
switches off, so it almost doesn’t pick it up. Maybe I could have dyslexia and
I don’t know about it, but the way certain colours and even the way certain
things are written and with fonts clicks with my brain a bit more. And I find
that with the Monzo app just how it is visually and how it’s designed, the UX/UI
design is really helpful for my brain to, kind of, plan and stay organised and
stay on top of things.
EMMA- What
other solutions have you put in place?
RACH- I’ve
got a wallet. But I also have this thing at home called an important box. It’s
actually an old knitting kit box where I put my keys, my wallets, my AirPods or
anything that’s important, because I know it should be there and it will be in
there. And that’s mainly because I have different jackets and different bags
and I may forget to transfer something from one bag to another, which happens.
I have ADHD, I’m forgetful. So, just having everything in the important box
will enable me to to put it back there or pick it up when I’m heading
out, and I won’t have to worry about did I take something out of a different
pocket, or did I leave my wallet in a different bag. So, yes.
EMMA- So,
it’s having a routine of just walking in and putting it all into that box?
RACH- Yes,
and then my brain s it and it just becomes second nature, so I won’t
have to stress about organising, planning or ing things because I’ve
just made it so easy for my brain to this is where it’s always going
to be.
EMMA- Sure.
So, one option maybe for getting some financial is Personal Independent
Payments or PIP. And that’s a welfare benefit which is designed to cover or try
and meet the extra cost of being disabled. And here’s a couple of facts around
PIP and ADHD – we’ve got all the alphabet acronyms going on here, haven’t we.
In
2023 there were 52,989 PIP claimants with ADHD listed as their main disabling
condition. This makes it actually the 14th most common condition being awarded
PIP. 79% of those claimants were in
their 20s. Do you get PIP, Rach?
RACH- Well,
no, I actually knew that people with ADHD could claim PIP and there’s quite a
few people have used it. I wish more people knew about it because that sounds
super helpful, and I know lots of people will benefit from using PIP.
EMMA- Yeah.
So, will you be applying now?
RACH- What
I’ve thought about applying to is actually Access to Work. So, it’s a grant for
people who are working and who may need special aids. So, if you are
neurodivergent or disabled you can apply to, let’s say, have an ADHD coach
through the Access to Work scheme, and your employer or the Access to Work
grant will fund it. So, I am thinking about looking at things that will make it
easier for me to navigate life with ADHD in different spheres, whether it’s in
the workplace or just in daily life.
EMMA- Amanda,
do you get PIP?
AMANDA- I
get Access to Work, and that’s helped me with coaching and ing me. A lot
of the things that we’ve talked about, Rach talked about this morning, I
recognise those in myself. However, it’s interesting 79% of the PIP payments
are people in their 20s. We’ve really got to think about those people in their
40s, 50s, 60s who may well be not so digitally literate and getting into huge
financial troubles because they’re not so adept with some of the IT that
exists. And I think we do need to reflect that ADHD is a lifelong condition,
not just in young people as well.
EMMA- So,
do you think older people are maybe less aware of ADHD and there’s maybe more
stigma around it then?
AMANDA- Many
women are only getting diagnosed in their 40s, 50s and 60s now, because we
thought it was all these things. I think that’s been missed along the way. And
I think there are a lot of people who were missed when they were younger, might
have had anxiety and depression, and only now recognising that it could well
have been ADHD and been living with stigma, shame and the consequences of ADHD.
So, that tax might be hidden because people don’t want to talk about it, and
ADHD until recently has been a stigma. People have thought of deficit and
disorder and avoided really sharing that information with other people,
especially if you’re in employment it’s something people didn’t feel confident
telling their employers.
EMMA- And
that’s why they don’t claim?
AMANDA- And
that’s why they don’t claim.
EMMA- Rach
Idowu, Professor Amanda Kirby, thank you so much for ing me.
Now,
you will the case of Oscar Pistorius, the Paralympian who was
convicted of murdering his girlfriend, Reeva Steenkamp after he shot her multiple
times through a bathroom door at his home in Pretoria. The gold medallist and
double amputee, nicknamed Bladerunner, later claimed he had mistaken her for a
burglar. It shocked the world. He was freed on parole from a South African jail
on Friday, nearly 11 years after Reeva’s fatal shooting. Reports so far say
he’s staying with an uncle and, along with other restrictions, he’s not allowed
to speak to the media. On the line from Pretoria is the BBC’s Daniel De Simone
who’s been following the story.
So,
Daniel, you’re the South African correspondent with the BBC, you’ve been
working a lot on this story over the last few days, talk me through what
happened on Friday. I think for us in the UK what’s quite interesting is why he
was released now when there are so many years left on his tariff?
DANIEL- Well,
in South Africa offenders who’ve committed a crime, like Oscar Pistorius has
committed, do have the right to apply for parole at the halfway point of their
sentence, with conditions. So, that means that although he’s come out of prison
and he’s sort of, if you like, free, he’s walking around freely, he is under
conditions. So, the hearing took place in November; it wasn’t public, so
although we were outside the prison we weren’t allowed in the hearing, so we
don’t know exactly everything that was said. His victim Reeva Steenkamp who he
murdered her mother, she didn’t formally oppose his release, but she did
express concern about him, very much she had a lot of doubt about whether he’s
reformed, whether he’s rehabilitated.
EMMA- He
can walk around freely! Is that right?
DANIEL- Well,
they’ve not actually published the official list of the conditions. They’ve
said what some of them are, the authorities. There would be no reason why he
can’t walk around freely, why he can’t go to the shops. There would be limits,
just as there are often for people in the UK who are released from prison on
licence or perhaps are on bail, that they’re often required to be at a particular
address. Beyond that and beyond him having to attend mandatory programmes on
gender-based violence, on anger management and he’ll have to do community
service, he’ll have to do other things, he would be able to walk around.
EMMA- In
of him getting out and about, how are local people reacting to the
release? How is local media reporting this?
DANIEL- Well,
it was a huge story on Friday and the day before, where there was coverage
before his release, on the day of his release, and subsequently over the
weekend and into this week. It’s really all over all of South Africa media.
When we were at the prison and the house where we know he was taken to live,
which is his uncle’s house nearby, there were large numbers of South African
journalists, different South African television networks. But there was
considerable effort really placed to get him out of the prison and into the
other house without him being seen. So, he wasn’t seen by any of the media,
despite the fact there was really a very large amount of media.
EMMA- And
what are they saying? What are they writing? What are they talking about?
DANIEL- So,
the issue of gender-based violence, so violence against women and girls, is a
big issue in South Africa. Where his case is so well-known, and is easily the
best known case of gender-based violence of a man murdering a woman in South
Africa, there’s a real concern amongst campaigners on the issue and others that
his early release on parole sends a message of weakness on this issue, that
someone who’s murdered a woman less than 11 years ago and to be already walking
around just is a terrible signal.
I
should say that Reeva Steenkamp’s mother, June, did release a statement on
Friday, on the day of his release, expressing some reassurance Oscar Pistorius
was being made to do mandatory programmes on gender-based violence and anger
management. And saying she felt that that showed that the issue was taken
seriously within the criminal justice system in South Africa. But that’s a big
issue really.
And
thinking about murders generally, so all kinds of murders, we’re actually at a
20-year high at the moment in South Africa with regards to the murder rate.
There were over 27,000 people murdered in a year. In the UK, which is a larger
population in the UK, I think there’s 700 murders in a year.
EMMA- Wow.
DANIEL- So,
you can get a sense of how many murders there actually are. And a lot of them
are not solved; I think most of them are not solved. If you are convicted of
murder in the UK you will get a life sentence; you’re likely to get a minimum
term rather than a whole life order, but you’re going to have a life sentence
if you commit murder. That means you can always be recalled to prison. Oscar Pistorius
hasn’t got a life sentence, despite being convicted of murder. There will come
a point in late 2029 where the conditions will expire and he would then be a
free person, there will be no conditions after that. And campaigners on crime
who feel that crime isn’t dealt with seriously enough and severely enough here
feel also that this case does highlight that to some extent, because he is a
convicted murderer who is already out and is then going to be off all
conditions in late 2029.
EMMA- There
has been speculation around what Oscar Pistorius will do next. There’s been
speculation that he might become a pastor and different things like that. Have
you any idea?
DANIEL- I’ve
heard a lot of things, but a lot of it is basically speculation. As part of his
parole conditions he will be encouraged to work. This isn’t a case of being
under house arrest where you’re not allowed to go out and do anything. I think
the speculation about him becoming some
kind of pastor is sort of generated by some comments that his father made to a
paper some years ago now about him taking an active role within a Christian
community in prison. But that was some years ago now, so I don’t know how
well-founded that is. I don’t know, it’s very interesting, he’s so well-known
that when the licence conditions, when the parole conditions do expire in late
2029 he’ll inevitably be able to find a platform. There will be people that
will want to talk to him. He’s only 37, he’s out, and by the time the
conditions expire he’ll be in his early 40s, so he’s actually still young. And
because he’s so well-known and so famous he will still be a focus of attention,
and he will still find a platform.
EMMA- Because
this is a disability podcast it is interesting to talk about Oscar Pistorius’s
time in prison. Is it felt that he was given any special treatment because of
his fame or disability? And was his prison time accessible?
DANIEL- We
actually know very little officially about his time in prison. Latterly the
prison he was released from, which is just outside Pretoria, it’s quite near to
his family; it’s about 20, 25 minutes’ drive from the house where he’s now
believed to be staying. He would have been able to get around. He would have
been able to get outside. The authorities have been at pains to make it clear
he’s just treated like anyone else.
EMMA- Daniel
De Simone thank you very much for talking to me about Oscar Pistorius and his
release from prison.
MUSIC- Access
All.
NIKKI- Award
winning documentary, Is There Anybody Out There? has been praised by
screenwriter Jack Thorne, who we all love Jack Thorne, and it’s making waves on
the festival circuit as well. now, in it Ella Glendining, whose disability is
really rare, films herself on a search for someone with a body that looks like
hers. And she explores what it takes to love yourself fiercely as a disabled person
in a non-disabled world.
[Clip]
ELLA- Being
disabled in this ableist world is brutal.
MALE- Growing
up it’s definitely a struggle. No one wants to be like me. Not even I want to
be me.
FEMALE- I
get a lot of doubt everywhere I go.
FEMALE- Is
there ever going to be a point where it’s not going to matter?
ELLA- I
used to imagine myself in the future as better. And at some point you just
realise this is it.
DR PALEY- People
want to improve aesthetics, and with surgery we could lengthen the limb.
[End of Clip]
NIKKI- There
is so much more to this doc. Emma and I both loved watching it. So, let’s meet
the one and only Ella. Hello Ella.
ELLA- Hello.
Thank you so much for having me. I’m really, really excited to be doing this.
NIKKI- Thank
you so much for coming on. We don’t tend to ask people, we don’t do it at all
actually on the podcast, directly all the time about their impairment. But in
this case obviously it is an important aspect of your brilliant film. So, are
you all right, just for listeners that don’t know, to tell us a bit about your
rare disability and why you wanted to find someone who was, like, in the same
boat as you or a bit like you?
ELLA- Yeah,
sure. So, I have a really rare condition. I don’t tend to tell people the name,
mostly because it just doesn’t feel that relevant to me. It’s difficult to
explain why I think to non-disabled people, but I guess we’re talking to lots
of disabled people here. It feels private, and I think as soon as you tell
people the name of your condition people are super nosey. And it’s just a bit
dehumanising, isn’t it? We’re so used to being medicalised and all that stuff.
EMMA- Yeah.
ELLA- I
have a rare condition which means I’m short in height and I use a wheelchair
for long distances. And my legs they look very unusual, they’re small and I
walk kind of crouched. It was never this tragic thing; I’ve always been disabled
and proud, certainly for as long as I can . But I also have always been
so aware of feeling like the only one in the room, even in disability spaces
and stuff. But yeah, I always had this longing, like I say in the film, like a
missing puzzle piece that I’d never seen anyone remotely like me before.
EMMA- And
was your search successful, Ella, when you went searching for somebody?
ELLA- It
was really interesting the kinds of similarities that I noticed between us all.
I think the biggest one was that we were all class clowns, we all had this very
strong desire to prove ourselves – which isn’t necessarily healthy, and I think
is very common within the disability community more broadly. But yeah, there
was just like this resilience that felt really rare and I really recognised in
everyone I met.
The
most illuminating thing was that it made me realise I already had what I was
looking for, as cheesy as that sounds, I already have it in my disabled friends
and the disability community generally. I didn’t need to find someone with a
body exactly like mine.
NIKKI- We’ve
got a clip of you meeting Dr Paley, who’s a leading surgeon for kids with your
kind of impairment. And you’re talking about procedures here:
[Clip]
DR PALEY- The
best option if you have the type 3 is what’s called a rotationplasty, and that
is where you turn the whole leg around and you convert the remnant of the knee
into a hip t, and you convert the ankle, which is usually pretty normal,
into a knee t, and you put on a prosthetic. The whole idea is that you can
stand at normal height. But you’re just not a great case at this age and stage.
Usually we do that at age three.
[End of clip]
NIKKI- Just
explain a bit more about that clip that we just heard there, Ella.
ELLA- So,
that’s when I go and meet with, as you said, the lead or a very specialist
surgeon. He specialises in limb lengthening mainly, so not just my condition
but kids with different types of dwarfism and stuff. So, sometimes it’s just
aesthetic, and then in cases like mine he would argue it’s to, I think what he
said was to improve aesthetics and function. But of course these surgeries are
really major. There’s no fixed result because, I mean, these are really major
operations. I found this meeting really, really difficult. I had to have two
large glasses of wine before going to meet with him [laughter]. And I knew I
didn’t want to go in all guns blazing as well, because what does it really
achieve going to yell at people who think differently to you. I knew I was not
going to change this man’s mind. And I wanted to hear him out as well, because
of course it’s a really complex issue and I’m not by any means anti-surgery or
anti-treatment. But I think my mum sort of says it best in the film, she says, ‘If
it ain’t broke don’t fix it’. And I think that’s exactly how I feel. And I
think it’s rooted in ableism this sort of operation that he’s describing, it’s
just why?
NIKKI- I
have to say I love your mum. She’s incredible, isn’t she?
ELLA- Yes,
my mum is a wonderful, wonderful person. But it was really, really important
for me not to kind of perpetuate that, like, oh saintly figures that care for
disabled people, the saintly parents, the saintly long-suffering partner, carer
figure, whoever. That’s why I – with her permission of course – I talk about
her alcoholism in the film.
NIKKI- Yeah,
so honest.
ELLA- Yeah,
really honest, and I’m really grateful that she was happy for me to share a bit
of that stuff.
NIKKI- I
loved the part when you were talking to her about, you know how people say to
you, do you have a sibling, you’re an only child, and you think well their
thought must be well, your mum didn’t want to have another one just in case of
the same condition or whatever.
[Clip]
ELLA- How
does that make you feel?
MUM- Oh
god no, if I could have another one like you that’d be fine. That had nothing
to do with your condition whatsoever. That’s something I’d never even thought
of, but yeah, I guess.
ELLA- People
ask it all the time, and it’s so obvious what they’re thinking [laughs].
[End of clip]
ELLA- She
said, ‘Just tell them that mum was too messed up to have any other children’ and
it’s true. But she’s also wonderful. I think what my parents did amazingly
though, and I think what comes across in the film, is that they accepted me.
That’s all. They’re very human, they messed up in the way that all people do,
they are not saints, but they’re wonderful people. But what they did amazingly
well is just accept me. And it shouldn’t be rocket science to accept your
disabled child and not immediately, like desperately try to make them
non-disabled or as close to non-disabled as possible. It’s just so tragic I
think.
NIKKI- You
had quite a few things chucked at you as well, didn’t you, during filming.
Because COVID for one, not good.
ELLA- Yeah.
NIKKI- Baby,
amazing. You had a baby.
ELLA- Yeah,
I did.
NIKKI- I
mean, how did that all change the story and where you were going with the film
when you first initially thought of it?
ELLA- I
think it adds a whole new depth for the story, in the way that I can’t even
imagine what the film would be without the pregnancy now, because I’m reflecting
so much on my own childhood and also my mum’s experience of being pregnant.
EMMA- I
realised that in the documentary friendship was very important to the story
too, and your friend, Naomi, who’s autistic. What did the big chats with lots
of gin that you had with Naomi in the film what did that bring to the story? It
feels like it was sort of identity and disability politics etc.
ELLA- Yeah,
Naomi she’s my favourite part of the film really.
[Clip]
ELLA- I
used to imagine myself in the future and I imagined myself as better, you know.
And at some point you just realise it’s not going to happen and this is it. But,
um, that’s incredibly freeing at the same time. That’s so freeing because it’s
like this is it [laughs] and it’s fine, it’s wonderful.
NAOMI- That
is so powerful.
ELLA- Yeah.
[End of clip]
ELLA- The
scenes with Naomi I’m so proud of because I think you never seen on screen two
disabled friends hanging out and chatting about disabled stuff in a way that,
you know, is perhaps not…yeah, it doesn’t include non-disabled people; it was
and our experience. And I think what’s so interesting about our chats
is that we have really opposing experiences of disability physically – she’s
got a neurological disability, she’s autistic; I’m not autistic but yeah, look
incredibly different and I’m physically disabled – but we experience ableism
and feel about ableism exactly the same way, which I just think is so
interesting. She’s really, kind of, yeah definitely a soulmate.
NIKKI- What’s
next for you? What do you want to do after this brilliant doc?
ELLA- I’m
in the process of writing my first fiction feature at the moment, which is a
historical drama about the life of a court dwarf in the 1600s. And, yeah, it’s a
disabled character at its core. It’s about his journey to overcoming his
internalised ableism, and finding community with the court fools of the palace.
NIKKI- Wowzers!
ELLA- Yeah,
I’m writing that and will also direct it, so that’s what’s next. And I’m so
excited it.
NIKKI- And
that’s for screen, is it? Is that for TV or is it a film?
ELLA- It’s
a film, it’s a feature film, yeah, for the BFI.
NIKKI- You
can watch Ella’s, it’s just a brilliant film – I’ve got captivating here on the
script but I’m searching for an even better word than that because it is just
so watchable – it’s called Is There Anybody Out There? and it’s online via the BFI Player. And
there’s also optional audio description too. Definitely check it out, it’s
brilliant. And come back, Ella.
ELLA- Thank
you, I’d love to. And I feel very starstruck; you’re both totally amazing and I
love Access All.
EMMA- A
big thanks to Ella there. It was absolutely great talking to her. And Nikki
will be back soon. She’s off on assignment at the moment, as they say. And that’s
it for our first show of 2024. And we have some good news to end on though.
the York City Council Blue Badge ban in all pedestrian areas of the
city? Well, that was brought in in 2021 and there was a big disabled-led
campaign to reverse it. We found out late last year that it was reversed, but
this week was the first time that residents were able to come into the city and
park with their Blue Badges. Just in time for the sales as well. Brilliant.
Let
us know what you think of Access All. You can get in touch with us on X,
formerly known as Twitter, and on Instagram @BBCAccessAll. And our email is accessall@bbc.co.uk. We’re all about
disability and mental health, so if you do know someone who think would particularly
enjoy the podcast please do tell them about it. And do share us on your own
social media, that would be great as well. Thanks for listening for another
week. See you.
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