3rd March 2023
bbc.co.uk/accessall
Access All – episode 42
Presented by Nikki Fox and
Emma Tracey
EMMA- Nikki,
I’ve been going out of my comfort zone this week and trying out a brand new
type of white cane. It’s like your average white cane but with a big vibrating
device screwed on to the top of it. I can hear you laughing already!
NIKKI- I
could see it and it looks…
EMMA- This
is really serious!
NIKKI- I
can see it, and it looks like – no offence, Em, you're having trouble screwing
it on – but it looks like…
EMMA- I’m
having trouble screwing it on.
NIKKI- …like
a mini vacuum cleaner.
EMMA- And
I kind of know where you’re going to end up with this, so I have giving you
some questions to help you get through this bit of the podcast.
NIKKI- Okay.
EMMA- Could
you turn them over please?
NIKKI- Okay,
I’m turning them over. What does it do?
EMMA- Can
you hear the vibration? Hang on, I’ll put it on. [Vibration]
NIKKI- I
can hear that, Ems.
EMMA- Yeah,
so it vibrates. You walk along with this vibrating bit in your hand so that you
can feel it vibrating as you go along.
NIKKI- Why
does it vibrate, question mark?
EMMA- To
tell me if there’s an obstacle. It’s got sensors on it and it tells me to sort
of maybe veer a little bit one way or the other through vibrations.
NIKKI- Does
it, Emma, give different vibrations depending on what you’re doing?
EMMA- It
reacts to its environment.
NIKKI- Reactive,
okay.
EMMA- Yeah,
it does. So, it’s on continuous vibrate at the moment because I’m just sitting
there, and it’s vertical. But it does some sort of short vibrating pulses, and
it stops vibrating sometimes, and…
NIKKI- It’s
annoying when it stops, isn’t it?
EMMA- You
feel a bit sort of empty and like it’s not helping you out anymore. Do you know
what I mean?
NIKKI- Empty,
yeah. Have you heard people whispering going, ‘I can hear a vibration. Have you
left it in your bag, Lucy?’ any of that?
EMMA- I’ve
sort of been a bit embarrassed to take it out too
much to be honest with you. I kind of like to keep it to myself and use it in
quiet places at the moment.
NIKKI- Well,
Emma Tracey since we’ve started doing this podcast I can not accuse you of not
teaching me stuff, because that is a new one to me.
EMMA- Well…
NIKKI- And
she’s gone. Literally the vibration has taken out Emma in the studio. Oh well,
we’d probably best get on with the show.
MUSIC- Theme
music.
NIKKI- It’s
Access All, the BBC’s disability and mental health podcast at your service,
darlings. I’m Nikki Fox and I’m in London.
EMMA- And
in Edinburgh I’m Emma Tracey.
NIKKI- Now,
if I were to say school, I wonder how many parents of disabled kids listening
to this will shudder really, because we’re talking SEND. The government has
released new plans for specialist education, or SEND. We’ll be hearing from
parents and our correspondent, Elaine Dunkley who’s looked into this, very
shortly.
EMMA- And
later we’re talking to professional dancer from Strictly, Amy Dowden, who has
Crohn’s disease.
NIKKI- If
you think your friends will like our podcast then please tell them, because
it’ll boost our hits and maybe even our budget. It would definitely not boost
our budget, will it, Emma?
EMMA- No.
NIKKI- We’re
not getting a bigger budget. Subscribe to us on BBC Sounds or wherever you get
your podcasts.
ROSIE- I’m
in therapy. I’m really dealing with a lot of internalised ableism.
NIKKI- Rosie
Jones, Emma. Oh my goodness, she was incredible last week, wasn’t she? She was
so honest. I couldn’t believe what I was hearing. And when I was watching back
the little video that we’ve put on Twitter, that’s had loads of views as well,
you could see…
EMMA- 3
million apparently.
NIKKI- …my
sister was like, you were crying, weren’t you?’ And I was like, ‘I was a little
bit’. But it really got me having her sat so close to me. And she’s so
naturally happy and upbeat, and I mean no one is all the time. Even when she
just comes into the studio she’s making me laugh the minute she walks in the
door.
EMMA- Yeah.
NIKKI- She’s
so cool at that, and she does see the good in things and she’s like a sunny-side-up
type person. So, to see her face change when she was talking about the trolling
and the ableism and everything oh, it really got me.
EMMA- It
felt in the moment very, very important for her to say it, for other disabled
people to know. Because we do get emails from people who have been trolled
online for basically ableist trolling, so people trolling them specifically
because their disabled. We do know that happens plenty. And it just felt
really, really important for her to say it. And we’re not going to repeat any
of the things that people said about her.
NIKKI- No.
EMMA- But
we put out an article about the interview and BBC News tweeted it. And lo and
behold, the people, lots of people weren’t very nice about it.
NIKKI- Yeah.
She messaged saying ‘Isn’t ironic that the article that you guys have written
about the ableist trolling I received has received ableist trolling?’ And I did
check in on her and check she was okay, because it was a lot, she was very open
and honest with us about what she received, and then through that interview she
was getting more. And she was absolutely fine. Obviously it was upsetting, she
did not hide from that, but she did say that it does spur her on to carry on,
to keep working hard, to be successful, because in her words that’s the best
thing that she can do, that’s the way she can beat it.
EMMA- She’s
an absolute legend, honestly. But I do wonder why this happens so much to
disabled people, and in such a vitriolic way. I wonder do we need an ableism
correspondent, someone who has given this a lot of thought, done a lot of
research on this, maybe experienced it as well, to come on and sort of walk us
through it and give us a bit of insight.
NIKKI- I
have always said, and I said this to Rosie and I’ve said this to you a lot,
haven’t I, Emma, that I do feel women get it harder, very much so.
EMMA- Right.
So, our ableism correspondent, whoever you are, why is that? Why do you think
that it’s felt that women get it harder? Email us accessall@bbc.co.uk, be our ableism
correspondent.
Can
I talk about something else that happened last week?
NIKKI- And
do prove me wrong, because I have done a little bit of research into this, I’ve
sort of compared myself to other famous fellas on the telly who are disabled;
it’s not very scientific but I do think that that is the case. Sorry Emma,
carry on.
EMMA- Something
else we talked about last week was furniture and vehicles on pavements. It
seemed like a very boring subject, like yeah, yeah, yeah, it’s something that
we’ve been talking about for years, why do we have to keep talking about it.
But we were right to talk about it because you emailed us about it. You told us
your stories of scary times when you’ve had to go onto the road. And one of the
emails that stuck out for me was Beverley. She emailed us from the medieval
tourist town of Warwick. So, it’s medieval so it’s got lots of inaccessibilities,
it’s for tourists, there are lots and lots of people there. And she was saying
that in her short scoot from her house to her mum’s there’s all sorts of times
when she needs to scoot on very busy roads. And she says a particular anxiety
for her is bus stops. If there’s a bus there and she’s had to go onto the road for
some reason she kind of has to wait, because she doesn’t want to go past the
bus in case the bus doesn’t see her, but also there are loads of cars coming up
behind her. It sounds really hairy, Nikki. Can you relate to that?
NIKKI- I’ve
had my hairy moments, Ems, very much so. A lot when I’m working in London
actually. But I do feel that other people who aren’t disabled only truly
understand it when they’re with you I notice. Because when I’m going on a night
out, even when we went on our Access All do the same thing happened: I had to
go off road to get to our venue. I was with people, and they were like, ‘Oh my
goodness, this is dangerous, Nikki. You can’t do this’. They were like, ‘Stop!
Stop! Stop!’ And I’m like, ‘Come on, we’ve got to go, quick, quick, it’s the
only way, it is the only way’.
EMMA- Well,
we could get very deep on this and say, are our lives less important that we
are told we need to…
NIKKI- Let’s
not think too hard.
EMMA- …go
on busy roads because…
NIKKI- It
could be very depressing, Emma.
EMMA- …there’s
no room for us on the pavement. I know, I know.
NIKKI- I
mean, we can’t live like that, Ems.
EMMA- No.
NIKKI- We
can’t.
EMMA- We
have to do our thing and hope for the best.
NIKKI- We
have to hope that the built environment – I hate that, why did I say the built
environment?
EMMA- [In
a serious voice] the built environment.
NIKKI- We
have to hope that our environment will improve a little more rapidly than it
ever has done in the past. And I don’t think that’s unfair of me to say.
Now,
this week it’s Eating Disorder Awareness Week. And there’s a new podcast from
BBC 5 Live called The Weigh Up. The host is Molly Smith. She’s 19 and
recovering from anorexia. Now, in the podcast she speaks to all sorts of
experts over nine episodes, but she also speaks to her family about how they
ed her through her illness. Here is Molly telling them how she managed
to throw away food at school, despite being watched like a hawk:
MOLLY- I
mapped out where every single bin was in the school.
MALE- It’s
like taking the dog for a walk.
MOLLY- Yeah,
so I could throw away my food without anyone knowing. Or like the little bins
in the toilets, chuck it in there. I knew where every bin was at school. Under
the toilets, the toilets at school were my best friend, honestly. They gave me
more than anyone else.
EMMA- The
first two episodes are now on BBC Sounds, and a new one will drop every
Wednesday.
NIKKI- The
government has unveiled new plans to reform for children with special
educational needs and disabilities in England. Now, the long awaited Department
for Education plans aim to improve what it calls a postcode lottery system.
Plans for earlier diagnosis are part of the reforms, as well as a commitment to
build more free schools to educate disabled children and young people. Now,
ing us today is BBC correspondent, the wonderful Elaine Dunkley, who's been
following this story and has recently, along with the brilliant team, made the
documentary SEND Help for BBC News. And I would urge anyone to watch it back.
It really did highlight the impact a lack of specialist schools has on young
people and their families.
Elaine,
thank you so much. I know you’ve not got much time today because you’re busy
for BBC News. But how have the plans gone down with education providers and
parents of disabled children?
ELAINE- Well,
I think the change has certainly been welcome, but there are a lot of people
saying, ‘Is it enough?’ because this is a system that has been in crisis for
far too many people for far too long. So, what are we looking at? We’re looking
at children who are missing huge amounts of their school; we’re looking at
families who are being pushed to their limits as they navigate a really complex
system; we’re looking at increasing demand and not enough funding; mainstream
schools struggling to cope, special educational need schools oversubscribed,
long waiting lists. So, this is a really big problem, a huge problem for far
too many families and children who feel failed. And so whilst the government is
saying it’s transformational, there are a lot of organisations and lots of
charities saying, this is not enough because this is crisis.
NIKKI- That’s
right. Disability Rights UK have come out today saying that the plans tinker,
they don’t transform. Is that the general feeling you’re getting?
ELAINE- The
reaction of many people around these plans will be, is that it, is this what
we’re getting. And I think one of the biggest issues is around funding. The
government’s saying that it’s going to invest £2.6 billion into new places over
the next three years, to create new places in specialist schools. They’ve
talked about high-needs’ funding will be increased to over £10 billion by 2024.
There’s going to be 400 educational psychologists to help with earlier
diagnosis in mainstream schools. £30 million towards families getting short
breaks to provide some sort of respite for families of children with really
complex needs. But it’s not just about funding; there are huge issues around
trust. Many families feel so badly let down by the current system, and they’ll
be concerned that this is more about saving money than it is about getting
children the right .
Now,
it’s quite interesting because last week I did an exclusive interview with the
education secretary, Gillian Keegan, and I started by talking to her actually
about my own nephew, Tegan, gorgeous, wonderful eight year old boy. He’s
autistic and he’s got very limited speech. And she started talking to me about
her nephew who has Down’s syndrome and she was saying, ‘Do you know what, I get
it, I really get this and I understand what parents are battling with’. So, for
me I think that’s reassuring that someone gets it, because unless you
experience it or see it I don’t think people recognise the level of crisis
families can be in when they’re just trying to get for their children.
But there’s a lot of work to be done because there’s this whole issue, as I was
saying, around trust. And so one of the things we talked about, I asked her, ‘Can
you guarantee that children who need an education health and care plan are
going to get one?’ And she said, ‘Yes, they should’. But she also said that
children shouldn’t need one; mainstream schools should be able to cater for
things like one-to-one learning, speech and language development. But a lot of
families are going to be really worried and nervous about that, because having
an EH it’s a legal document, and without one where’s the guarantee that your
child is going to get the that they need? And also do the schools to
have resources to meet need? And so there are a whole lot of issues around
trusting this.
And
I suppose the other issue is around ability. The government have said
they’re going to bring in a national standard so there’s not this postcode
lottery and patchwork of in some areas there’s good provision and in other
areas there’s bad. But what people have said to me about that is, do you know
there’s already a legal framework, there’s the Children and Families Act of
2014. And what needs to happen is that local authorities need to abide by the
law, understand it, and they need to be properly funded to deliver it. And if
they don’t there needs to be some level of ability.
There’s
also the issue around data as well. A few weeks ago I did quite a big
investigation into just how oversubscribed specialist schools are. But the
government doesn’t have that data. So, a lot of people are asking, ‘Does the
government really understand the magnitude and the scale of this problem?’ 52%
of specialist schools are oversubscribed.
I
think the biggest things I can say from this is when you see those families in
distress, I’ll be totally honest with you, I was in tears; I was in tears
watching them battling, fighting for years, their children’s mental health is
deteriorating. This is about children who have hopes and dreams getting the
that they need. And I think what we have to realise is if these young
people don’t have hope none of us do. And why should they be failed in this
way?
NIKKI- Elaine,
thank you so much. We really appreciate you coming on. Now ing us we’ve got
two parents of disabled young people. Welcome to Tanya Tiraoro and Lucy
Bartley. Thank you for coming on, guys. Now, all your children receive their
education with . And Lucy, your son, Samuel, is still at college, isn’t
he, at the moment?
LUCY- He
is, that’s right. So, Samuel is turning 21 in June. And he’s currently in this
third year at Croydon College.
NIKKI- Is
he enjoying it?
LUCY- Yeah.
I mean, he does enjoy the one day a week where he has his music technology
provision, which is something that actually I had to end up organising for him
there, because it wasn’t on offer, not at the level that he could access. But
it’s been the best thing for him. He really enjoys that day and it’s what
thrives on; he loves making music. The rest of college is a bit arduous to be
honest.
NIKKI- Really?
LUCY- Yeah.
NIKKI- What
kind of provisions does your son need?
LUCY- So,
Samuel was born with spina bifida and hydrocephalous, so he has physical
impairment and also quite severe learning impairments. So, he requires
one-to-one both to access the environment but also the curriculum. And
also requires quite significant with his personal care needs too, which
has always been a bit of a challenge.
NIKKI- And
he’ll get the , won’t he Lucy, until he’s 25, because EHs go to 25, is
that right?
LUCY- They
do. That said a local authority at any point can decide that the EH is no
longer relevant, and they can cease or suggest ceasing to maintain it on the
grounds that the young person is no longer making progress, so it’s not worth
it. And that can be a real battle for parents and young people to try justify
that continuation of their EH, and then hence the continuation of their
education.
NIKKI- It’s
a constant worry. In a nutshell, an EH is an education health and care plan,
that’s right, isn’t it Lucy?
LUCY- Yeah.
NIKKI- And
you need that for your son, don’t you, to get the provision that he needs?
LUCY- Well,
yes. And I was interested in reading Gillian Keegan’s comments. A, she called
it an education and health plan, so I’m not sure how great is her
understanding of exactly what it is. But B, she’s very much of the view that
disabled young people and children should be receiving the they need
within their education without the EH. But actually frankly that doesn’t
happen. It has become very much a necessity to ensure that a disabled child
gets .
NIKKI- Yeah.
Coming to Tanya now. Thank you Lucy. Tanya, how did your children receive their
education?
TANYA- Both
mine ended up in an independent specialist school, fantastic school called More
House, Frensham. Then they moved back into mainstream for sixth form, because
they’d been at this small school for a long time and they wanted to try
something different. My eldest went on to university, got a first, and is now
theatre manager of a sixth form college in Hampshire. My younger one has had
significant mental health problems, didn’t get the that she needed in
university. This is one of the things that we really wanted is to have EHs
included in higher education, which they are not; which is a huge anomaly and
hasn’t been changed with these new plans. So, she is currently now at home at
23 not doing anything, with nothing to look forward to.
NIKKI- Why
are they not included? What, does it stop?
TANYA- Yeah.
If you are going into higher education you cannot have an EH. They say, well
you’ve got disabled students allowance; but it’s not statutory. And as we found
you have to end up sorting out the yourself, which she wasn’t able to
do. And I didn’t know that she had to do that, so she didn’t get what she
needed. They say, oh we can’t make universities do it. But yet they have
apprenticeships with companies and you can have an EH and be paid for that.
And it’s not as if it would cost. The key for it would be for it to be
statutory so that universities cannot the buck; they cannot not provide
the that a young person needs. And also if they’ve had social care
within their EH and health that just falls by the wayside as
well. So, they’re in a possibly strange new place without the they
need.
EMMA- You
know the report today on 2nd March emphasises they’re providing more specialist
schools. And it wasn’t actually that long ago that we were saying that
mainstream was the way forward. So, what changed, do you think?
TANYA- Well,
nothing’s really changed in the real world. When you read the document it is
clear that what they are trying to do is reduce the number of EHs. They have
quite a few local authorities g up to something called a Safety Valve
Programme. LAs are in dire financial straits, and as part of the criteria for
this they have to cut the number of EHs. And we see this as a golden thread
all the way through this document. So, they do want to improve lower
down to make EHs less necessary, shall we say, but that is not something that
you can do overnight.
But
for me the biggest takeaway from this is that there is no legislation change at
the moment. So, EHs are still in force; the criteria for them is still the
same. So, if a local authority or a school tells you, ‘Oh well the law has
changed now’ they’re lying to you.
NIKKI- It’s
just worth mentioning that the government aren’t here to respond. But thank you
everyone so much for coming on. Thank you Lucy, thank you Tanya, it’s been a
great chat.
Now,
we are huge Strictly fans here on Access All. You’ll have heard Emma and I chatting
away about it all the time. So, we are beyond excited to have professional
dancer Amy Dowden. She’s with us. Hello Amy. Thank you so much for coming on.
AMY- Thank
you for having me. How are you?
NIKKI- We’re
all right. We’re a bit giddy we’ve got the Dowden.
EMMA- Yes,
very, very excited. Especially after watching your amazing documentary, which
we’ll talk about in a minute.
NIKKI- We’re
going to get to that.
EMMA- Really,
really excited, yeah.
NIKKI- Now,
Amy has dazzled us on the dancefloor with celebrity partners like my absolute
favourite, it’s a puppet, Brian Connelly. I love Brian. He randomly is really
good mates with one of my friends, Gok Wan. And I just love that Gok Wan and
Brian Connelly are really good mates.
EMMA- That’s
a duo. That is a duo.
NIKKI- Yeah.
And you're with the lovely Karim who was amazing, he was such a good dancer,
and Tom Fletcher. But Amy is also a former British national Latin dance
champion. Now, you’ve been previously partnered, haven’t you, with JJ Chalmers,
who’s got limb difference. You’ve danced with CBeebies George Webster who’s got
Down’s syndrome. So, our first question had to be, just a bit selfishly, we are
going to move on, but how would you dance if you were going to dance with me
and Emma? Given that I use a mobility scooter, often associated with older
people, and Emma is totally blind.
AMY- Teaching
Brian Connelly was totally different to teaching Tom Fletcher. Everybody learns
differently, everyone moves differently. So, with JJ missing limbs, so maybe a
way I would technically explain a movement, I’d be doing it and then realising
oh, it doesn’t work. But that’s because he was missing that muscle. So, then I
needed to go away and it was my job to learn, to be able to know how to then
teach him and to get the movement. And there were things we couldn’t do, so we
couldn’t do lifts, and there were certain arm movements as well above the
shoulders that we couldn’t do. And that’s fine. I just adapted it around and
made the best of the choreography. And luckily he went all the way on to the
quarter finals.
I’ll
never forget when he said this was better than any rehab he had. And to me that
was like winning. That’ll stay with me forever. JJ and I didn’t sympathise for
one another; we just understood.
NIKKI- Understood,
yeah, there’s a difference, isn’t there?
EMMA- I think
that’s me and you, isn’t it, Nikki.
NIKKI- Totally.
EMMA- It’s
not like oh poor you. It’s like, how are you going to get around that then?
NIKKI- Even
if I’ve got terrible pain on my ankles because of my splints Emma’s like,
whatever love.
EMMA- Well,
I’m just like, you didn’t go to your splint appointment, no sympathy for you.
NIKKI- Yeah,
exactly.
AMY- And
sympathy, I was only talking about this with Diane Buswell, one of the other
pros, like there’s a fine line. And sometimes I get really annoyed with
sympathy. If I’m talking about my Crohn’s it’ll be basically making and raising
awareness, and for people to understand. I’m not sat there because I want everyone
to feel sorry for me. That’s not the case at all. I know what I’ve been dealt
with and I’ll get on with it. And I think there’s that fine line, isn’t it,
because sometimes it can turn quite patronising. And maybe I’m just trying to
educate people. If I’m having a low day and I’m in pain and I’m having a moan I
just need to get it off my chest. I’m not asking for everybody to go, oh Amy.
Does that make sense?
EMMA- You’re
preaching to the converted here, Amy, definitely about all that stuff.
NIKKI- Is
that one of the reasons, Amy, going back to not wanting sympathy, is that one
of probably many, I’d say, reasons why you weren’t so open about having
Crohn’s. Because Emma and I watched your documentary last night and, oh my
goodness, it’s so powerful. It’s Strictly Amy, Crohn’s and Me, and it’s still
on the iPlayer so I’d urge anyone listening to watch it back. You’re so open
and really warm. You really do not shy away from the pain that you’re in when
you’re having a flare-up and when things get really awful and you have to go to
hospital. But you also mentioned in the documentary that you were always quite
hesitant about revealing that you had Crohn’s. Was it sympathy? What were the
reasons for not coming out?
AMY- It
was a mixture of them. I guess I’d suffered so much growing up and I didn’t
want this to define me. I wanted people to get to know me rather than be like,
oh that’s Amy with Crohn’s disease. I wanted them to see me as a dancer I
guess; which was so silly at the time when I look back. I wasted so much time
in of raising awareness and doing all I could. But I guess for so many
years people would be asking me, ‘How’s your health, Amy? How’s your Crohn’s?’
and I wanted them to be asking me, ‘How’s your dancing going? How’s life?’ And
everything always seemed to be circled around the Crohn’s, and I was just fed
up of it and I just wanted to get on with my life. And I guess I didn’t want
people to assume that I got onto Strictly because of my Crohn’s. And I didn’t
want – and I know this would never be the case and it’s so ridiculous of me –
but I didn’t want celebrities as well to go, oh I don’t want Amy because she’s
got Crohn’s, because she’s poorly. So, I wanted to prove myself on the show
before. I thought maybe my job would be at risk. And it’s not the case at all
because the entire Strictly production team go beyond for me, always ensuring
that if I’m not well that I’m not pushing myself, that sometimes they look at
me and go, ‘No, take the afternoon off the group rehearsal, you don’t need to
be there, please rest’. Just ensuring like with the foods that there’s
everything I possibly need; that there are breaks if I need them. And they don’t
just do it for me; they do it for everybody. There’s always a contingency plan
in case people are injured. Touch wood, I’ve never missed a live show with a
celebrity, but other pros have because of injuries and things. And they look
after everybody.
But
I guess in my head I’d had so many rejections because of my Crohn’s.
NIKKI- Had
you?
AMY- Yeah.
EMMA- What
kinds of rejections?
AMY- In
a way still do.
NIKKI- Why?
AMY- Because
you’re seen as a risk.
NIKKI- Really?
AMY- Say
a producer wants to take you own tour, and to headline your own tour, what
happens to them and their insurance when I’m poorly?
NIKKI- So,
you’ve actually had experience with this, you’ve not been able to tour?
AMY- Oh
yeah, I’ve not been able to. So, dance partners, before my darling husband took
me on, didn’t…
EMMA- Took
me on!
AMY- Yeah.
So, I’d go for what you’d call as a try-out in our industry, and as soon as my
dance teacher would say, ‘Right, you need to tell them about your Crohn’s
disease’ wouldn’t hear back, seen as a risk.
NIKKI- Wow.
AMY- And
that used to upset me. And that stayed with me forever because it didn’t define
my talent, my hard work, my dedication. And yet I never asked for Crohn’s
disease; I’d do anything in the world not to suffer with it. And yet I’m being
punished for it now because I’m being robbed of opportunities. And I guess that
was in the back of my mind going into Strictly. And I can never forget, I rang
my parents and said I’d been offered the job at Strictly, and even they said,
‘Ah, but do they know about your Crohn’s yet?’
EMMA- I
think you might have got on there because you won a world championship in
Blackpool, right?
NIKKI- Yeah.
AMY- But
you don’t see it like that at the time. When you’ve had rejection because of
something unfortunately, I can speaking to somebody before and they
said it’s like putting a nail in a piece of wood, if you take the nail out of
the piece of wood the wood is still dented, and so those comments and those
moments will always remain with me now. But Strictly weren’t. I can
sitting in that meeting and saying, ‘I need to tell you something. I’ve got
Crohn’s’ and they were like, ‘Yeah, and that’s absolutely fine. Just let us
know what we need to do for you’. Since I got Strictly everything changed.
Everyone saw me in a different light. It’s just in the build-up; honestly, I
had so many rejections because of it. And you have to tell them, don’t you,
you’ve got Crohn’s disease.
NIKKI- Yeah.
Amy, my fella – my sister tells me off for saying that; she’s like, ‘You’re 42,
stop saying my fella’ – my boyfriend has got ulcerative colitis, and he was
diagnosed with that a couple of years ago. Obviously not as severe as Crohn’s,
but I’ve seen how he had to completely change his whole lifestyle, food, the
whole shebang. But for people that don’t understand Crohn’s can you give us a
kind of idea of how it affects your body, and also how you have to live your
life really?
AMY- Yeah,
so Crohn’s and colitis is inflammatory bowel diseases, and obviously people
think oh, it just affects the gut. Well, alone the gut controls so much,
doesn’t it: your digestive, your energy, you name it. If you feel nervous you
put it on your stomach. If you feel excited, happy, you feel it in your
stomach. If we feel sick we get that feeling in our gut. So, you think how much
the gut can control our body. But people think it starts there but it doesn’t;
it starts from the mouth right through. So, I can get mouth ulcers, cold sores,
my skin can inflame, get swollen eyes, pain, sickness, I suffer from severe
constipation but people can have terrible diarrhoea, it can leave you with a
stoma bag, multiple operations, medication every day, it obviously affects your
diet. So, it’s certainly a rotten illness to live with. It can give you
fatigue. People can go on to get arthritis. And you think we don’t digest our
nutrients like everybody else; that leads to other problems. People can suffer
with it and are lucky enough to have the most minimal symptoms, and then there
are some who are bed bound, tube fed and just don’t have the quality of life.
And there’s just not enough out there; there’s not enough people talking about
it. People don’t want to talk about pooh and guts and bowels, they all get
embarrassed. So, it’s about breaking down the stigma, getting people talking,
getting people knowing what it is and it is out there.
NIKKI- I
just wanted to also touch on the fact that I suppose Crohn’s is an invisible
disability really, isn’t it, at its heart?
AMY- Yes
exactly.
NIKKI- Everyone
can see that I’m disabled in my little scooter, and they can probably see that
Emma is too. I think there is a difference. And I wonder how you feel about the
world that we live in now for people with invisible disabilities. I always worry
when somebody comes out of a disabled bathroom and I might be a bit judge-y and
be like they shouldn’t be there because they’re not in a wheelchair. But
actually you could have Crohn’s for goodness sake, you know.
AMY- Yeah.
I’d love to say it’s getting easier but it’s actually not. I’ve had many cases
where you have to skip a toilet queue because I’m about to vomit, or I’m in
extreme pain and I need to get there and do my medication. And the looks you
get. You don’t want to shout out, ‘I’ve got Crohn’s disease’ to anybody. You
never know what people are going through. It’s just making people aware really
that not every illness or disability is visible. Sometimes that warm smile,
everything’s going to be okay, can go a long way.
NIKKI- Thanks
for listening. We’re going to be back next week as usual. If you subscribe to
us on whatever device or your computer you’ll get our podcast on Friday morning
around 10am. That’s when we drop, isn’t it, Emma?
EMMA- That’s
right.
NIKKI- I’m
down with the kids, Emma. You’re not just having any of it, are you?
[Trailer for Newscast]
PRESENTER- You
know when you’re worried about something, but then you talk to your friend who
knows more about the subject than you do, and straightaway you start to feel
better? That’s what we try and do every day on Newscast.
CLIP- Now,
they’re saying that that would be simple to do, it would give everyone
certainty.
PRESENTER- We
talk to people who are in the news:
CLIP- You
were chasing me round with a plate of cheese.
PRESENTER- We
talk to people who know what’s going on in the news:
CLIP- At
least I didn’t get up and slap anybody.
PRESENTER- We
talk to people who understand what the news means:
CLIP- I
think that he’s decided he’s going to listen, and then he might just intervene.
PRESENTER- And we
talk to the best BBC journalists, asking the most important questions:
CHRIS- What’s
wrong with chinos? You don’t want them, people to start wearing chinos?
CLIP- Don’t
start me, Chris.
PRESENTER- That’s
Newscast from BBC News, the podcast that knows a lot of people who know a lot
about the news.
CLIP- And
I was like, go on Kate, put some more welly into it!
CLIP- Listen
to Newscast every day on BBC Sounds.
CLIP- I’m
glad I asked that.
CLIP- I’m
very glad that you asked that!
