91Èȱ¬

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3rd March 2023

bbc.co.uk/accessall

Access All – episode 42

Presented by Nikki Fox and Emma Tracey

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EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I could see it and it looks…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý This is really serious!

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I can see it, and it looks like – no offence, Em, you're having trouble screwing it on – but it looks like…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý I’m having trouble screwing it on.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý …like a mini vacuum cleaner.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Could you turn them over please?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay, I’m turning them over. What does it do?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Can you hear the vibration? Hang on, I’ll put it on. [Vibration]

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I can hear that, Ems.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Why does it vibrate, question mark?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Does it, Emma, give different vibrations depending on what you’re doing?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý It reacts to its environment.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Reactive, okay.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s annoying when it stops, isn’t it?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý You feel a bit sort of empty and like it’s not helping you out anymore. Do you know what I mean?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌý Well…

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌý Theme music.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s Access All, the 91Èȱ¬â€™s disability and mental health podcast at your service, darlings. I’m Nikki Fox and I’m in London.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý And in Edinburgh I’m Emma Tracey.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌý And later we’re talking to professional dancer from Strictly, Amy Dowden, who has Crohn’s disease.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌý No.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We’re not getting a bigger budget. Subscribe to us on 91Èȱ¬ Sounds or wherever you get your podcasts.

ROSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý I’m in therapy. I’m really dealing with a lot of internalised ableism.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌý 3 million apparently.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý …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-ÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý No.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý But we put out an article about the interview and 91Èȱ¬ News tweeted it. And lo and behold, the people, lots of people weren’t very nice about it.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌý 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.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Can I talk about something else that happened last week?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌý Well, we could get very deep on this and say, are our lives less important that we are told we need to…

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Let’s not think too hard.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý …go on busy roads because…

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It could be very depressing, Emma.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý …there’s no room for us on the pavement. I know, I know.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I mean, we can’t live like that, Ems.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý No.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We can’t.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý We have to do our thing and hope for the best.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We have to hope that the built environment – I hate that, why did I say the built environment?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý [In a serious voice] the built environment.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Now, this week it’s Eating Disorder Awareness Week. And there’s a new podcast from 91Èȱ¬ 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 supported 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-ÌýÌýÌýÌýÌýÌýÌý I mapped out where every single bin was in the school.

MALE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s like taking the dog for a walk.

MOLLY-ÌýÌýÌýÌýÌýÌýÌý 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 support than anyone else.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý The first two episodes are now on 91Èȱ¬ Sounds, and a new one will drop every Wednesday.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The government has unveiled new plans to reform support 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, joining us today is 91Èȱ¬ 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 91Èȱ¬ 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.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Elaine, thank you so much. I know you’ve not got much time today because you’re busy for 91Èȱ¬ News. But how have the plans gone down with education providers and parents of disabled children?

ELAINE-ÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌý 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 support.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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 support 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 EHCP it’s a legal document, and without one where’s the guarantee that your child is going to get the support 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.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And I suppose the other issue is around accountability. 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 accountability.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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 support 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Elaine, thank you so much. We really appreciate you coming on. Now joining 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 support. And Lucy, your son, Samuel, is still at college, isn’t he, at the moment?

LUCY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý He is, that’s right. So, Samuel is turning 21 in June. And he’s currently in this third year at Croydon College.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Is he enjoying it?

LUCY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Really?

LUCY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What kind of provisions does your son need?

LUCY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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 support both to access the environment but also the curriculum. And also requires quite significant support with his personal care needs too, which has always been a bit of a challenge.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And he’ll get the support, won’t he Lucy, until he’s 25, because EHCPs go to 25, is that right?

LUCY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý They do. That said a local authority at any point can decide that the EHCP 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 EHCP, and then hence the continuation of their education.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s a constant worry. In a nutshell, an EHCP is an education health and care plan, that’s right, isn’t it Lucy?

LUCY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And you need that for your son, don’t you, to get the provision that he needs?

LUCY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, yes. And I was interested in reading Gillian Keegan’s comments. A, she called it an education and health support 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 support they need within their education without the EHCP. But actually frankly that doesn’t happen. It has become very much a necessity to ensure that a disabled child gets support.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. Coming to Tanya now. Thank you Lucy. Tanya, how did your children receive their education?

TANYA-ÌýÌýÌýÌýÌýÌýÌý 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 support that she needed in university. This is one of the things that we really wanted is to have EHCPs 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Why are they not included? What, does it stop?

TANYA-ÌýÌýÌýÌýÌýÌýÌý Yeah. If you are going into higher education you cannot have an EHCP. 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 support 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 EHCP 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 pass the buck; they cannot not provide the support that a young person needs. And also if they’ve had social care support within their EHCP and health support that just falls by the wayside as well. So, they’re in a possibly strange new place without the support they need.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌý 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 EHCPs. They have quite a few local authorities signing 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 EHCPs. And we see this as a golden thread all the way through this document. So, they do want to improve support lower down to make EHCPs less necessary, shall we say, but that is not something that you can do overnight.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But for me the biggest takeaway from this is that there is no legislation change at the moment. So, EHCPs 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you for having me. How are you?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We’re all right. We’re a bit giddy we’ve got the Dowden.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Yes, very, very excited. Especially after watching your amazing documentary, which we’ll talk about in a minute.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We’re going to get to that.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Really, really excited, yeah.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌý That’s a duo. That is a duo.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Understood, yeah, there’s a difference, isn’t there?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý I think that’s me and you, isn’t it, Nikki.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Totally.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý It’s not like oh poor you. It’s like, how are you going to get around that then?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Even if I’ve got terrible pain on my ankles because of my splints Emma’s like, whatever love.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Well, I’m just like, you didn’t go to your splint appointment, no sympathy for you.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, exactly.

AMY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌý You’re preaching to the converted here, Amy, definitely about all that stuff.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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 terms 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.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But I guess in my head I’d had so many rejections because of my Crohn’s.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Had you?

AMY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý What kinds of rejections?

AMY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý In a way still do.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Why?

AMY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Because you’re seen as a risk.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Really?

AMY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, you’ve actually had experience with this, you’ve not been able to tour?

AMY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh yeah, I’ve not been able to. So, dance partners, before my darling husband took me on, didn’t…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Took me on!

AMY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Wow.

AMY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌý I think you might have got on there because you won a world championship in Blackpool, right?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

AMY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But you don’t see it like that at the time. When you’ve had rejection because of something unfortunately, I can remember 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 remember 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes exactly.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 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-ÌýÌýÌýÌýÌýÌýÌýÌý That’s right.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’m down with the kids, Emma. You’re not just having any of it, are you?

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