5th May 2023
bbc.co.uk/accessall
Access All – episode 51
Presented by Nikki Fox and
Emma Tracey
NIKKI- Hey,
Ems.
EMMA- Uh-huh?
NIKKI- I’m
a bit nervous about this weekend.
EMMA- Why,
what’s happening this weekend?
NIKKI- It’s
the Coronation, Ems.
EMMA- Yeah.
NIKKI- It’s
the Coronation and I’ve been asked to do some lives for BBC News and for a
programme on Sunday.
EMMA- Ooh!
NIKKI- Yeah,
I know, I know. I’m excited, but it’s the clothes that I think are stressing me
out more than what’s going to come out of my mouth.
EMMA- Really?
NIKKI- What
do you wear?
EMMA- So,
is it like at a wedding where you want to look really nice but you don’t want
to upstage the bride, or the Queen Consort?
NIKKI- Well…
EMMA- Do
you know what I mean? Do you have to be separate from the crowd, separate from
the Royals? That sounds kind of complicated.
NIKKI- It
is. It’s a very difficult brief. I’m test driving one of the outfits now, Emma.
I’m so hugely overdressed for a podcast recording.
EMMA- Love
it.
NIKKI- I’m
wearing like this bright pink puff-sleeved maxi dress.
EMMA- Nice.
NIKKI- Yeah,
I quite like it. So, I like the puff bit.
EMMA- So,
the shoulders are covered. I was just wondering, instead of puff couldn’t you
have big shoulder pads?
NIKKI- Yeah,
I do wear shoulder pads sometimes, Ems. They’re slippery suckers though. I know
they’re supposed to stick but they always come down on me.
EMMA- So,
they could be down your back and you wouldn’t be able to get them?
NIKKI- Yeah,
exactly. Well, I’m going to be in Northampton on the Sunday and there’s a big
event that day, there’s going to be food, tables, face painting. I might even
get to wear a crown that a load of kids have made.
EMMA- Are
they going to paint your face?
NIKKI- That’s
what I’m hoping.
EMMA- What
are you going to get done?
NIKKI- Who
knows, Emma? They can just go for their life really.
EMMA- Shouldn’t
you go for some sort of disability superstar, like can you paint me Frida Kahlo
please or Stephen Hawking?
NIKKI- Stephen
Hawking!
EMMA- Well,
yeah. What about something people usually ask for like a panda or a tiger, or a
Union Jack?
NIKKI- I
might just go and play it safe for a winged eyeliner, but I don’t know whether
a nine year old would be able to do that.
EMMA- Oh,
I bet they would from TikTok now.
NIKKI- Well,
actually yeah.
EMMA- Do
me some contouring please.
NIKKI- Yeah,
yeah, yeah.
EMMA- No
problem.
NIKKI- I’ll
look at straight out of Only Way is Essex, won’t I? Here’s hoping.
MUSIC- Theme
music.
NIKKI- I’m
Nikki Fox and this is Access All, the BBC’s disability and mental health
podcast.
EMMA- Thank
you for listening. I’m Emma Tracey, and we’re here every week starting new
conversations, and giving you those details that you want to hear.
NIKKI- Well,
we’d best get started then, haven’t we? This week we’re talking about the big
event. Yes, we’re talking about the Coronation which is happening this weekend.
And something far less glam, we’re talking about flying when you’re disabled.
Again.
EMMA- Again.
NIKKI- I’m
sure we’ll talk about it again. And we’re also going to chat to a dancer who’s
had to manage his life with all sorts of really debilitating allergies.
EMMA- You’ll
find us on BBC Sounds, we’re Access All. Subscribe, then tell us all your
friends, then tell us you’ve told all your friends just so that we feel
included.
NIKKI- It’s
all about inclusion, isn’t it, Em?
EMMA- Absolutely.
NIKKI- Well,
it’s a huge weekend for the UK as the country prepares to crown a new king. The
Coronation of King Charles III takes place on Saturday at Westminster Abbey,
with coverage on BBC radio and TV, a signed version on BBC Two and accessible
coverage for people who are blind or partially sighted on the red button. Now,
the Coronation route will have a dedicated accessible space, which is great,
with first aid and mental health first aid facilities. At the 57 big screens
across the country there will be a dedicated wheelchair area, which is great,
hearing loops and British sign language interpreters. I’m going to be part of
the coverage just for BBC News, though, not quite as glam as JJ here on my
left, who is definitely going to be part of the main coverage, the BBC’s
presenting team on the day of the Coronation, it’s JJ Chalmers.
JJ- Thank
you very much. Yeah, I get my face on the billboard for this one, you know.
NIKKI- Yeah,
it’s not the billboard; there’s no billboard for the Fox. It wouldn’t fit my
massive head, to be fair. We’re also ed by the wonderful Ade Adepitan
because Ade, you are going to be at the Eden Project in Cornwall, aren’t you?
ADE- Yes,
I am. I’m down at the Eden Project. I’ll be talking about how people can
celebrate the great outdoors, bringing communities together and looking after
the climate. And it’s all part of the Eden Project’s big lunch, and this year
they’ve teamed up with the Coronation to have the Coronation big lunch. And
that’s all about getting communities together, getting people out to meet other
people in their neighbourhood and have food and just come together. I mean, for
the last couple of years we’ve been a nation that hasn’t had that opportunity
to really come together because of lockdown and all the other things. The Eden Project
has also done a load of research that shows that 54% of Brits are really buoyed
and feel good by being outdoors, and another 43% of them love doing it and
sharing it with other people. So, that’s what this weekend is about.
NIKKI- They
were really interesting stats actually those. And it’s funny, isn’t it, because
it sounds so obvious about getting out is good for us, but we kind of have to
remind ourselves as well sometimes, don’t we, that actually it’s good. Now, JJ
obviously can you just remind listeners about your connection to the military?
JJ- Yeah,
so I served in the Royal Marines for ten years, but within that career I was
wounded when I was in Afghanistan. So, I was blown up – for want of a better
phrase – by an improvised explosive device. They sometimes get called roadside
bombs in the media. And basically when the explosion went off it bludgeoned me
from head to toe. I’m very lucky to come away with my life, let alone my arms,
but none of my body works the way it should. They put me back together. It’s
been a long slow process. But as a result now that I’m a broadcaster I have
this understanding of the humans that wear the uniforms. Because that’s a big
thing about a weekend like this: it’s all going to look perfect and effortless,
but it’s the effort that goes in behind the scenes that I want to peel back the
curtain a wee bit and let people see that. But also what it feels like for a
soldier, a sailor, an aviator to be part of this. That’s my job to peel back
the onion and find out what’s inside.
NIKKI- Peel
back the onion, and that’s why you are perfect for it. And I was wondering,
what do you think it’s going to mean to other disabled veterans?
JJ- Yeah,
the thing about, and Ade’s kind of touched upon it, this is a weekend for
bringing people together. And I think particularly within the wounded community,
as is what we like to term ourselves, ultimately one of the things that happens
when you acquire a disability in the military is that it unfortunately ends
your career, which takes away a part of your identity, which takes away part of
who you are, you think in the initial instant. But actually two things happen:
first of all that community still exists, you’re still part of it. I’m still
very close with the friends that I’ve got. But also there comes a time that
everybody leaves the military and we must civvy street, as we would call
it. But it’s really important that as veterans we are part of wider society. We
ultimately served society once upon a time so we should really be part of it.
And so weekends like this that bring people together actually it’s about being
brought into a new community a lot of the time. And I think veterans have a
really important part to play, and particularly veterans with a disability
because of the insights and the experience that they bring actually they make
communities a richer place. I know guys will be getting stuck into whatever
celebrations are happening this weekend.
NIKKI- Yes.
And Ade, what does this kind of event to you mean as well?
ADE- I
feel like it’s been a hard four or five years, which is where the country’s
almost felt like we’ve come apart and we’re not as together as we used to. And
there are many people out there who may not normally have the confidence to go
and speak to a neighbour or speak to a stranger out there, but here’s a great
excuse to do so.
NIKKI- A
reason, yeah.
ADE- There
will be street parties. And it’s a lot easier to do it whilst you’re eating,
whilst you’re having some food or imbibing in some liquid or whatever because
it loosens people up and many people will make new friends and new communities.
NIKKI- Oh
I love that. That is what it’s about, isn’t it, and making new friends. It’s
quite wonderful. I was also reading, JJ, you in your career you didn’t do any
of this kind of stuff, did you?
JJ- No.
I mean, I’m what we would term a fighting soldier. So, as a marine honestly I
would be more comfortable on my belt buckle in Afghanistan than I would be on
the drill square on Horse Guards Parade. And I genuinely mean that because,
again, it’s what you're sort of used to. For the guardsmen and those that do
this day in and day out that’s their comfort zone and they absolutely love it.
I have nothing but the utmost respect for what they do, but there is a part of
me that would think, why would you be doing this, go and get cold, wet and
miserable.
NIKKI- I
mean, I don’t know what both of you think as well, the access sounds quite
good, they’ve got the big screens, they’ve got the wheelchair areas.
JJ- Wonderful.
NIKKI- Hitting
the news red button and all that kind of stuff. That is really important, isn’t
it, for anything like this?
JJ- So
important.
ADE- Yeah,
it’s not like it was back in my day, or back in our day, Nikki.
NIKKI- What,
in 1950 odd?
JJ- Yeah,
the last Coronation in ’53.
NIKKI- It
feels very good.
ADE- There
weren’t any ramps or any of that stuff back then. This is kind of the fabric of
British society and to open the doors and to give access and to make it easier
for people with disabilities to enjoy and feel part of the pageantry and the
Coronation is super, super important and it is testimony to where we are as a
society.
JJ- Yeah.
And the monarchy, the royal family it is meant to lead the way; they’re meant
to be the example that we look to. So, something like the coronation should absolutely be
accessible to everybody.
NIKKI- We’ve
got a voice mail, I’m quite excited, from Nicky. He’s sent us this:
NICKY- I’ve
also been wary of concerts due to having various conditions which contribute to
difficulty standing for periods of time. I’ve only ever actually attended one
concert in the past and the experience wasn’t the greatest. They didn’t provide
any accessible areas, which was a bit demoralising, and I couldn’t enjoy the
show as much as I wanted to. I applied for the ballot back in February and my
details were provided for access requirements. The process has been extremely
straightforward. It confirmed that parking details would follow in the coming
days, and a few days later I received an email regarding the parking in Windsor
town. I managed to book in the Great Windsor Park by the long walk leading up
to Windsor Castle. Once we get there we’re hoping to soak up as much atmosphere
as possible and get a bite to eat in one of the restaurants. The spirit for the
whole event has been brilliant. I’ve ed a King’s Coronation concert group
on Facebook. There is just so much excitement surrounding it, it feels such a
privilege and once in a lifetime opportunity to attend such a historically
important event to celebrate the coronation of King Charles and Queen Camilla.
NIKKI- I
love that.
EMMA- Ah,
that’s lovely, isn’t it? I mean, he sounds so excited. He sounds so excited.
And isn’t it lovely to hear a disabled person who’s struggled before with
events to feel so comfortable and confident about this big, big, big event?
JJ- Yeah.
For me I’m so glad that it’s booked all and it’s gone well, and I really hope
come Monday he’s had a phenomenal weekend, but it really illustrates it can be
done.
EMMA- Yeah.
JJ- And
this is on the biggest scale imaginable. If it can be done here it can be done
in smaller venues, it can be done. We all know it’s kind of where’s the excuse,
where does it lie. And it’s whether you want to take the effort to make sure
that everybody’s included a lot of the time. And people, some may not be aware
of that, and that’s fair enough to some degree, but they should be made aware
and they should absolutely be thinking of others and everyone. But on something
like this it would be inexcusable for it not to be accessible.
ADE- It’s
great to get excited about all of this stuff, but I think it’s something that
it should always be there.
JJ- That’s
the thing.
ADE- When
we think about the way technology works we’ve managed to put a probe on an asteroid
flying through space at 48,000 miles an hour. So, to put audio description on a
TV channel, to put a few ramps in for the Coronation should happen, and it
should be simple, and it is happening. But I think as disabled people this is
what we should expect.
NIKKI- Hallelujah.
ADE- This
is the least that we should expect at all times. We should be able to have that
spontaneity, just like everybody else, to say we want to go to a big event and
it’s going to happen and there won’t be any problems.
NIKKI- Yeah.
It’s madness, isn’t it, I just spent 100 quid not long ago on a plastic shower
chair with wheels, 100 quid. They’re putting people, like you said, up into
space, and no one could design something better than that. The damned thing
breaks all the time.
ADE- Well,
I could have sold you one for like 98 quid if you’d come to me.
JJ- He
knows a guy who knows a guy.
ADE- Oh,
he knows a guy who knows a guy who knows a guy. Are you guys going to be at the
concert, are you working?
JJ- I’m
going to be heading home because I want to have some of the Coronation fun with
my family actually.
NIKKI- Oh,
I love that.
JJ- My
daughter’s six years old and absolutely so excited about this. And she’s
excited about the street party and making new friends.
NIKKI- I
love it.
JJ- I’m
going to get back up the road and bask in hopefully glorious sunshine for the
rest of the weekend.
ADE- JJ,
it’s wishful thinking if you think you’re going to get sunshine in Scotland,
mate. Come on.
NIKKI- And
Ade, I don’t know the logistics of you being at the Eden Project, but are you
going to be able to go to a concert or anything?
ADE- I’m
heading down to the Eden Project on the Saturday, so I’ll be there in Cornwall.
I mean, Cornwall is a lovely place and the Eden Project is absolutely stunning.
And then I’m back home to spend the bank holiday weekend with my littlun and my
wife. I think baby boy is going to need my attention; he’s obsessed with his scooter so I’ll be chasing after him at
the park on his scooter.
NIKKI- See,
I love this for our listeners: these two, JJ and Ade, you’re not the starry
showbiz types, are you?
JJ- Oh
no.
NIKKI- You’re
family men.
JJ- Absolutely,
hashtag dad life, hashtag dad bod.
EMMA- Hashtag
dad bod! I was just going to say that I think there are so many people in this
world who would love to have Ade Adepitan chasing after them on a scooter.
NIKKI- 100%.
ADE- Yeah,
when I’m saying it I’m usually trying to not say any expletives, because he
absolutely legs it. And he’s also starting to work out where he thinks I can
and can’t go in my wheelchair. He’s only two, and he’s looking at stairs and he’s
thinking ooh yeah, maybe I can get away from dad on stairs. But he doesn’t know
me, he doesn’t know I’ve got them tech’ers.
NIKKI- You’ve
got the tech, have you? Okay, I definitely need to chat to you then, Ade. Oh
guys, thank you so much for coming. Will you come back?
JJ- Absolutely.
NIKKI- It’s
been nice chatting to you guys.
JJ- It’s
been a real joy.
NIKKI- Let’s
have a rant about, we’ve been talking about flying…let’s not go into flying.
EMMA- I
know. I now want to talk about disabled parenting with them both for an entire
episode, so we can get back on that subject.
NIKKI- I’ll
go on holiday for that one.
JJ- Yes,
that’s an interesting one.
NIKKI- Oh,
thank you guys. Have the best time. You’re going to be amazing. You’ll both be
amazing. Thank you so much. Come on any time, any time.
Well,
Ems, I was on The One Show last night.
EMMA- Really?
NIKKI- Doing
my old Watchdog thing, you know, like I do every couple of weeks. And I was on
with two of the new Gladiators. [Gladiator theme tune] Gladiators, are you
ready?!
EMMA- Oh,
the Gladiators TV show, like the game show?
NIKKI- Contestants,
are you ready?
EMMA- Oh
gosh.
NIKKI- Yeah.
Gladiators for me, I don’t know whether it was for you, it was my Saturday
night. It was Gladiators, there was You Bet on with Matthew Kelly [music], then
it was Gladiators and we’d sit down at home, me and my mum and dad and my
sister, with turkey pittas – I know that sounds a bit random but it was always
turkey pitta Saturday – and we’d watch the Gladiators. And I just loved it
because you know me and my fitness, and you know obviously I can’t really keep
fit, but I love seeing other people who are fit. That sounded really awful but
you know what I mean.
EMMA- You
love seeing fit people.
NIKKI- Fit
people doing things. Anyway.
EMMA- And
there were really strong women in it as well.
NIKKI- That’s
it, there were. And I met a really strong woman last night, she was amazing,
Jodie Ounsley, her name was. Buff as you like, seriously buff, hench.
EMMA- I
don’t know what hench means. I’ve never heard that word in my life.
NIKKI- Hench
is like built like a house, you know.
EMMA- Oh
right. You're always teaching me new words.
NIKKI- Thanks
darling, thanks.
EMMA- Yeah,
it’s great.
NIKKI- I
hope they’re right. Anyway, I was speaking to Jodie, and I didn’t realise that
she had a hearing impairment. Because I do my bit on The One Show and then I
have to go straightaway, I have to leave the studio so they can come in. And
she was talking, because it’s Deaf Awareness Week this week, she was talking
about having a hearing impairment and how she wished she’d seen a Gladiator
back in the day who was like her. And so she’s really pleased that she can be
that person for others. And she was lovely, Emma. You’ll love her.
EMMA- Let’s
get her on the podcast.
NIKKI- Yeah,
when the show goes out I’ll get her on.
EMMA- Listen,
did you see the story this week, again, about airlines, but about the Irish
wheelchair using dude who had to, as he calls it, bunny hop down the Ryanair
flight steps in Sweden because the assistance didn’t come and he was in pain?
He has a spinal injury from a construction accident.
NIKKI- Yeah.
There are improvements being made on trains; there are improvements being made
on buses. It’s not perfect, but stuff is getting done, albeit slowly. With
flying it feels for many disabled people like just nothing changes.
EMMA- Why
are these stories not doing anything? Are we starting to think oh, there’s
another airline story, and then flick past it? What’s going to change things?
NIKKI- I
don’t know because, like you say, it’s not for want of media attention. And you
kind of hope that when you hear about stories like the one we heard this week
that the airline would be kind of shamed, or the airport. Frank Gardner did
make the point that it’s not just the airline, it’s not just the airport, it’s
not just special assistance; it’s all three of them not really working together
and not doing their thing.
EMMA- Asatu
emailed us, and she was saying that she had been, as she calls it, man-handled
on a recent holiday trying to get transferred from her chair to a vehicle seat.
And she’s got a solution: she’s asking why do airlines not give disabled people
discounts when disabled people, in her words, get a lesser service?
NIKKI- Yeah,
I hear her, I hear her. I would say to that, that from all of the people that
I’ve spoken to around this issue, on this issue, actually the transferring and
what you get transferred into is the biggest issue for sure. And it’s almost
like the aisle chair needs a change in design, and the people that transfer you
need to be trained better to avoid this happening, before we go down the
discount route. I’m not saying that’s not a good idea, but there’s also another
argument to say for me, because I can’t self-transfer, so I cannot get myself
from my scooter to the aisle chair, and then from the aisle chair to the plane
seat, and when the plane is in flight I can’t get from the chair to the, you
know what I mean, to go to the bathroom and all that kind of stuff.
EMMA- Yeah.
NIKKI- I
can’t do that, so I can’t actually travel on my own. I’m not allowed to book a
flight because I can’t…
EMMA- You’re
not allowed?
NIKKI- No.
EMMA- So,
there’s like a law, airlines will not let you travel by yourself?
NIKKI- No.
So, it would be nice if airlines could offer a sort of buy one, get one free,
like you get if you go to a concert and you need to have, if you absolutely
100% cannot do something unless you have someone who you have to pay for.
EMMA- It
sounds like it’s a no-brainer.
NIKKI- Yeah.
Years ago, before this job, I was at a roundtable with my sister, and my sister
had such a bee in her bonnet about this, because you know how much of a hard
time she has.
EMMA- Yeah.
NIKKI- And
it just infuriates her that nothing’s changed. And a lot of the airlines were
at this roundtable, the big ones, and she put it to them. And literally I’ve
never seen everyone’s head just look down: oh no, there’s no way we can do
that, oh, oh, ooh, ooh. But it’s that. And also let’s not forget there are some
disabled people that can only fly business class, not just because they’re you
see me bowling, they hate it. It’s not because they’re like they want to live
the high life. They have to have their legs out, and you have to have your PA
or assistant sit next to you, you have to be with them, so they have to have a
business ticket as well.
EMMA- Wow,
the extra costs of being disabled have just gone way up if you want to travel
by air.
NIKKI- Now,
after saying all of this we do have a little bit of news. Something is
happening: the Civil Aviation Authority, who I speak to an awful lot, is
looking into setting up a rating system, but this time for airlines. We know
they do them for airports, don’t they, Em?
EMMA- Yeah,
they’ve been doing that since 2014.
NIKKI- Yes.
So, this is like a ranking system. And they’re going to be ranking airlines
this time on things like the booking process, assistance provided and
accessibility on their planes. And they’re hoping that this may have a similar
effect as it did on airports. Because when an airport got ranked the worst
airport within a country mile it was quite a lot of press on that and they
didn’t like it. and they did, according to the Civil Aviation Authority, it did
shame them and they made some improvements. They’re hoping that this will have
the same effect on airlines. Now, the CAA is consulting on how this might work.
Now, the details can be found on their website. So, if you want to have a
little moan about it, why not? Let’s try and be part of fixing it.
I
always find, and I don’t know whether this is a physical disabled thing, as in
please don’t ruin my chair, please don’t, I’ve got so many…but I always find
the happiest of people, the most pleasant of disabled people can just
immediately the minute they step into the airport, just be like right, game
face on, fierce.
EMMA- Yeah.
NIKKI- And
you actually change, your personality changes, because it’s almost like you’re
ready for it, you’re ready.
EMMA- You’re
absolutely right; I’m a way less gentle, easy-going person in an airport.
NIKKI- Yeah,
you wouldn’t like me if I was in an airport, and I probably wouldn’t like you,
Ems.
EMMA- No.
But at the same time I’m also to the assistance like please love me, because
you’re also responsible for getting me on the plane. So, I am a hard-arse, I
know exactly what I need, but also love me and how are you and how is your
family, and this must be a very interesting job. I keep up this constant
patter. I’m not myself at all.
NIKKI- Oh,
it’s hard being disabled, love, sometimes.
EMMA- I’d
say people would quite like to get in touch with us about this.
NIKKI- I
would. You can message us on WhatsApp. Our number is 0330 123 9480. You could
do old school text, or you could send us a voice note. We love the voice notes.
You could also email us accessall@bbc.co.uk.
Or you could tweet us @BBCAccessAll. We love hearing from you so get in touch.
A
dancer who is allergic to food with all the unpleasant side effects that that
can bring has created a new theatre show inspired by how people pretend to be
something they’re not. Si Rawlinson is a British-Chinese choreographer whose
show, Saving Face, is about what happens when we all try hide our personal
struggles. And he’s here in the studio to tell us more. Hello Si.
SI- Hi,
how are you doing?
NIKKI- Great.
And thank you so much for coming in.
SI- It’s
a pleasure.
NIKKI- I
love it when you’re actually in the studio. I know Emma’s miles away but we can
see her on the screen so it’s all good. And Si, this show sounds really
interesting. I think we can all probably relate to trying to be something that
we’re not. But just tell us a little bit about the show.
SI- The
work itself is a work of fiction, the theatre show, like three office workers.
There’s a lot of humour, a lot of absurdity, a lot of silliness in it. All of
them have something that they’re trying to hide, they’re all trying to perform
the best version of themselves, whether that’s family stuff going on at home,
conditions like OCD or something, in my character’s case, where it’s basically
a version of myself with a chronic illness.
NIKKI- And
that’s why it’s called Saving Face?
SI- Yeah,
and all of them are trying to save face. They don’t want to it the things
that make them weak, which ironically is also stopping them from being fully
human. And when some kind of crisis happens at the office what happens when
they’re all trying to undermine each other and kind of throw each other under
the bus and use those things against each other. And hopefully it makes you
question at the end how much do we give space for each of our own fragility.
EMMA- It’s
all relative, is that what you’re saying?
SI- Yes,
it’s all relative. And it’s really about having gone through the pandemic I
noticed that there’s a major shift in the way that other people giving each
other space. So, basically I’ve lived my whole life with an autoimmune
condition, and at times it’s been something that has been managed quite well
and as far as anyone else can see doesn’t exist or it is invisible, and for a
very large amount of time it’s been extremely challenging.
NIKKI- What
is the condition, Si, if you don’t mind me asking, and how does it affect you?
SI- So,
it doesn’t have a specific name. It presents itself in all kinds of ways that
affect my immune system or how my immune system reacts to things. When I was
younger it kind of appeared as a bit of eczema, and as I got older it was like
asthma. I was generally reacting to some foods like peanuts and chilli, things
that were quite common. And then as I got a little bit older, into my teens,
the things that I could eat became less and less and I reacted more and more.
So, I’d get things like stomach pain and indigestion from certain kinds of
food. And one of the hardest things was it would greatly affect my ability to
sleep. So, that’s kind of like the personal thing that’s happening behind the
surface, and then oftentimes in the day I would be able to hide it. And my
experience for so much of my life was compartmentalising that and hiding the
fact that I had any kind of weakness or fragility or something that I thought
was essentially wrong with myself.
And it’s
weird, I think this is an experience that a lot of people have in all different
kinds of ways where we try and keep our personal struggles, the things that are
going on, whether it’s illness or family issues or financial issues or
experiences of class or race, all these things we just pretend don’t exist
generally in the versions that we try and perform of ourselves, which is like
this perfect version of ourselves.
NIKKI- And
that’s what your show is kind of all about, isn’t it?
SI- Yeah.
It’s set in a generic office. We noticed coming out of the pandemic where
everyone had this collective experience there is a lot more space for these
things, and we are starting to have a conversation, sometimes not so openly,
about how we are generous to each other. I know that I think Spain just started
introducing things called red days which obviously give space for women to be
women more.
NIKKI- Oh
okay.
SI- And
at work people give space for people who have families. And we just have a lot
more awareness about things like anxiety because going through the pandemic so
many people were stuck in close proximity with other people, and whether you
could experience something yourself, you probably at least know someone who had
that experience.
EMMA- Have
you found as someone with an invisible condition that people are more
understanding of chronic illness since long-COVID and COVID then, from your own
personal perspective?
SI- Yes.
There was a time when basically all I could eat was rice, cabbage, the cabbage
family, so it was like broccoli, cauliflower, and that’s it.
NIKKI- That
was it?
SI- That
was it for like three years. It was some kind of Grecian curse in a way. During
times like that obviously I’d have to cook everything at home and would make
massive vats of Tupperwares of this stuff because when I went out during the
day and had to work I can’t find that stuff anywhere, so if I want to eat I
have to prepare. And because it’s not great in of nutrition I had to literally
make, I don’t know, you know like those ice cream tubs, those large ones, maybe
four of those at least for a day, and I’d be eating constantly like a cow.
I’m
really lucky that I’m on new medication. I was struggling for a long time and
trying not to use things like immunosuppressants because it comes with a whole
host of side effects and long-term damage. Very often, like every few months, I
would take prednisolone, which is a really strong steroid, and one of the side
effects, among many, is that it can give you cataracts. Over the course of
several years I could tell I was getting blind, and it was just a choice: do I
take this medication and feel okay for a while – and it would be very
short-lived as well, like a couple of weeks – and go blind, or do I not take it
and feel awful. The decision was fairly easy in that position, and so I basically
went almost entirely blind in both of my eyes and had to have eye operations.
EMMA- All
of this did it have an effect on your mental health over the years? It sounds
like a lot for one person to cope with.
SI- Well,
again it’s easier for me to talk now because I’m on new medication, which works
similar to immunosuppressants but without barely any side effects in
comparison, so I do have some space from it now. I had a couple of coping
strategies where I did find it funny. And again, that’s kind of why I’m making
this show because there have been so many situations where I’m like, this is
just funny, being basically unable to see and then being on stage and then
trying to do a flip and then flipping into the back of the curtain of the stage
during performances. The amount of times where I would see people and not know
who it was and just have to be like hey, how are you doing, and don’t know if
it’s…
EMMA- That’s
my life, Si.
SI- Sure
[laughter]. The thing that was most challenging is just being awake pretty much
all night in different kinds of pain and scratching and things like that. The
silver lining is it has been a kind of therapy because when you’re just alone
with yourself for hours and hours and hours every single day you go through a
lot of thinking. And now I do feel like I have a lot of resilience. But I think
the biggest thing was just having a sense of hope, like every day I was like
maybe something will change and maybe I’ll miraculously get better, maybe
they’ll come out with some new medication. And coincidentally they did come out
with some new medication. And in many ways it does feel like a real miracle.
NIKKI- You
are a dancer, how beautiful is that? You’ve come up with a show. How does it
feel that you’ve brought that to the stage?
SI- So,
for me the show is a way of bringing people into the idea of private struggle
and invisible illness in a way that they can relate to and actually process it
in the way that we often process difficult things which is through like fun and
humour and through stories.
NIKKI- When
can people catch your show?
SI- On
26th and 27th May in Leicester at The Curve, and also on 23rd and 24th June at
The Place in London. It is a comedy, dance and theatre show.
NIKKI- It
sounds amazing. Si, thank you so much for coming in to talk to us about it.
Saving Face everyone. I’m obsessed with dance.
EMMA- Yes
you are. And he calls it a danceacle, which means that people break into dance
at all sorts of moments. I’m like basically Access All is a danceacle but you
don’t know it because it’s an audio podcast, but Nikki, I’m pretty sure that
you break into little dance moves every now and again.
NIKKI- All
the time, honestly. In my head I have full choreography, but in my head,
because I can’t actually do it.
SI- Nice.
Yeah, I’m looking forward to seeing it.
NIKKI- Thank
you, Si, it’s been a pleasure.
SI- Oh,
I should also mention there are audio described performances, an audio
described performance for each venue.
EMMA- Yes!
NIKKI- Fab,
well done.
Well,
that’s it for another week. Thank you so much for spending nearly 30 odd
minutes with us.
EMMA- If
you have stories for us – of course you do – get in touch in all the usual
ways.
NIKKI- And
please do subscribe to us wherever you are in the world on BBC Sounds or those
other places that you get your podcasts.
EMMA- Search
the web for BBC Access All transcript and you will find one for every single
show we’ve ever done.
NIKKI- Until
next time.
EMMA- Bye.
NIKKI- Bye.
[Trailer for Eurovisioncast]
MALE- Hello,
United Kingdom. This is Eurovisioncast.
FEMALE- Who’s
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MANS-
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MAE- Hey
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