Have we found the most accessible festival in the country?

EMMA - Hello, it's Access All at your service. Emma Tracy reporting for duty. And get your tents and your solar-powered chargers at the ready because we are embracing festival season on this episode.

[Clip]

KATE - You can tell if somewhere is going to be good if you message them and you say, have you got shower chairs? And they go, what? And you're like, okay. But even if they go, oh, no, we don't, but there might be something we could look at or something like that, right, okay, brilliant.

[End of clip]

EMMA - More of that later on. But Beth Rose is here, fellow disability and mental health reporter. Hi, Beth.

BETH R - Hi, Emma. Always a pleasure to be back with you.

EMMA - Beth, I've been doing a lot of video recording of myself the last month, which is not something I've been doing before and being totally blind and doing it at home in my house has been quite stressful, to be honest.

BETH R - There are a few questions here, Emma. What are you video recording in your house? Is it a new revenue stream we need to be aware of?

EMMA - No, but you have given me some food for thought there. No, I've been recording social media videos for the BBC News channels, so the Instagram and TikTok and such. It's the framing. I have no frame of reference for framing. I literally have had to figure out that I need a steady chair so I can be exactly facing forward. It has to be at the right height so that I know, always know where my camera is. I've got like a box on the left of me that I've been putting my arm flat against to try and like center me and keep me straight. I know. Then I have to stick my finger out and hit record and try and move my arm back without moving my head, face or body and then start talking. And it's really hard.

BETH R - And when you say you need to start talking, are you actually doing reporting? This is like legit BBC work.

EMMA - I'm telling a story to camera. So, you know, I've been talking about the social media ban for under 16s that the government wants to bring in and how that might impact some disabled people. I've been talking about the heat wave that's just been and there's probably going to be another one during the summer and how that has impacted on disabled people in different ways. Honestly, the telling the story is fine. The writing the script, the speaking, all fine. It's just getting myself set up for it. I was ringing my support person, Karen, to try and line me up, and then I had to get my husband in, and then he was on a call, so I had to wait. I now think I have it fairly well kind of figured out about how I sit and where I put my face. And I have a table and chair that nobody's allowed to use for anything else.

BETH R - It must never move.

EMMA - If I find that someone's moved the tripod and put it back, there will be hell to pay.

BETH R - But also, Emma, I've got my own story to tell you about TikTok.

EMMA - Are you getting some revenue?

BETH R - I'm not, and I don't think that will happen any time soon. I needed some cool festival goers. I didn't have any at the tips of my fingers. And someone was like, you've got to get on TikTok.

EMMA - We have this whole other area of life where we have to massage our social media accounts.

BETH R - And our egos.

EMMA - I've no ego left after the week, it's left the building.

MUSIC – Theme music

EMMA - Hello, I am Emma Tracey and this is Access All, the disability and mental health podcast that makes sure that you get heard on the stuff that matters. Please subscribe to us on BBC Sounds if you're in the UK or if internationally it's wherever you get your podcasts from. Just look for Access All, press that big subscribe button. We'd love to have you with us every month.

We're in party mode this month as the summer fully kicks in. Remember the novel and the film, The Secret Garden? Well, that's been reimagined for the stage with disability front and centre. Unlike the OG version, Colin can walk, Mary is autistic, and Martha has a mobility aid. It's so interesting. I can't wait to get into that one with you.

But first... Get your phone torches at the ready, get your dry shampoo and your wet wipes because it is festival season. And for years and years we've heard about some not so hot accessibility offerings, but are things about to get better at summertime festivals? Britain's equality watchdog, the Equality and Human Rights Commission, EHRC, has entered into a legal agreement with the business that runs some of the UK's biggest festivals, including Download and Wireless, and ordered them to improve their access. We'll hear from disabled fans of festivals in a bit and from a festival that's moving lock, stock and barrel across the country to improve its access. But first, the BBC's Annabel Rackham has been looking into this. Hi, Annabel.

ANNABEL - Hi.

EMMA - Now, Annabel, which festival company is under scrutiny?

ANNABEL - So it's Live Nation. It's a bit of a sort of pyramid situation, but Live Nation own Festival Republic, which runs some of the biggest festivals in the UK. So you've got festivals like Download that happened a couple of weeks ago, Reading and Leeds, which will be the biggest festival of the year, considering that there's no Glastonbury this year.

EMMA - And tell me a bit about the legal agreement that's been put in place.

ANNABEL - Yeah, so a couple of years ago, there was some complaints about the accessibility available, particularly at Download in 2023 and Wireless in 2022. And the agreement that was put in place was that they needed to have dedicated sensory calm spaces, quiet campsites, better welfare facilities, and also specialist well-being support.

EMMA - The first festival to try these new improvements out was Download in June. How did that go?

ANNABEL - Events organisers this year, made a better space for neurodivergent attendees in particular. So they had a calm space that had noise cancelling headphones, fidget toys, weighted blankets, and also some other quiet activities such as, I think, colouring and puzzles.

EMMA - And the government has also released guidelines for all live music, right?

ANNABEL - Yeah, so where the Equality and Human Rights Commission's ruling was just to Live Nation, The Culture, Media and Sport Committee actually released guidelines to be put in place at all live music events in England with suggestions of how, you know, where it's devolved in places like Wales, Northern Ireland and Scotland, how they could also implement these rules. So this was a way of making disabled people feel more included at live music events. Recommendations included working to improve infrastructure on site for accessibility, for security and also something really important, training, making sure that those working at these events understand the needs of people with disabilities and neurodivergence.

EMMA - Annabel Rackham, thank you. We know that loads of you are festival heads, so let's hear about some of your experiences of festivals over the years and why you love them so much. Let's start with Beth Maybury, who has ADHD and her fiancé, Nathan, who has cerebral palsy.

BETH M - Glastonbury, I've done twice, he's only done once. He's done Leeds Fest a couple of times. Gigs, we're pretty much at at least monthly. It's date night, basically. Disability shouldn't stop you, but there is obvious additional access requirements that we need and there's a lot more thought and a lot more decisions that have to be made. My fiancé has got cerebral palsy. Last year, he actually had a hip replacement. So, when we have access issues, it is very typically with stairs. We can't stand for long periods of time. We have been questioned. We had quite a few issues with some of the staff. We were following the access route and there was a number of times where we were stopped and it was like, You're not meant to be here. This is hospitality. Then we're shown them the map and then some would accept that, okay, maybe they got it wrong, but others were like, you're not allowed here. That can make it very difficult.

EMMA - And here's Kate Graham.

KATE - I am a triple threat. The threat is to my health and safety. ADHD, autism and dyspraxia. And I think for me... everything is adaptable, right? And if you go into something, knowing what's there, knowing what's available, knowing the distances, knowing stuff, you can plan around things. So I think good things that is like realistic videos, site maps, you can tell if somewhere is going to be good if you message them and you say, have you got shower chairs? And they go, what? You're like, okay. But even if they go, oh, no, we don't, but there might be something we could look at or something like that, you know, right, okay, brilliant. They're being honest. If there's a possibility of telling somebody somewhere what the number one kind of festival hack would be is a foldable, collapsible, small plastic chair, cheap as chips, but you can perch on it anywhere. You can use it as a shower chair. Some of the best festival tips I ever got came from that person who saw me tripping about in a pair of flip-flops and was like, mate, get yourself some Crocs. And I'm like, urgh. And they're like, no, trust me. Access reasons, get yourself Crocs.

EMMA - Some really great tips there, Kate. Thanks for sharing them. And one festival Kate loves is Out and Wild Festival, partly because of how seriously it takes its access. The festival is for lesbians and for non-binary people. And Polly Shute is one of the co-founders. Hi, Polly.

POLLY - Hello.

EMMA - Your festival's coming up really soon. How's the preparations going?

POLLY - Yeah, all good. So the festival runs Friday through till Monday morning in North Devon. So yeah, everything's looking good. I try and get to the site early just so I can make sure everything's been done. And it is the small things around accessibility that often are being missed.

EMMA - Tell me about some of those little things.

POLLY - Well, we have. Really nice bathroom attached to the campsite, but I did ask the campsite owner to put small ramps so that people with wheelchairs or access issues could easily access at least one set of showers, one set of toilets, one washroom, and he hasn't done that. So I'm asking him to do that today.

EMMA - Now, your festival, as I mentioned, is for lesbians and non-binary people. And you have a higher than average number of disabled ticket holders.

POLLY - Yeah, so every year we do a survey after the festival and one of the questions as we ask people is just around if they live with a disability. And it's always been in the kind of usually around 23 to 25%. And what we've noticed, particularly more recently, is the amount of people who will be saying that they live with neurodiversity in some aspects. So that's one of the areas we've really focused on in the last couple of years to make sure that we have a safe space hub and we do lots and lots of pre-meetups, and make sure our information is as specific as possible for people who need that level of specificity, if you see, I always get that word wrong, but you know what I mean.

EMMA - I do, like a visual story. Yeah, you make it very, very clear what's going to happen and when and how. What is in those quiet spaces?

POLLY - First of all, we have a wellness village which is set away from the main action, so it's not as noisy. And then in there we have from 2 till 6, we'll have it manned with two mental health trained nurses. We have bean bags, we'll have some weighted blankets, but it's really just a calm, cool, quiet space. If there's specific services they need, we will signpost them to those.

EMMA - You said you do quite a lot of pre-preparation information. You film all of the routes. Why is that?

POLLY - When you've been running a festival for five years, you learn lots of things. And even though you describe it, it's much easier to film for people so that they can see it for themselves. So we film it with someone walking it and that person will describe very accurately. And even the terrain, you know, it's concreted into here, then it's gravel, just so that we're really specific. We also give out free carer tickets, we help people put their tents up and we have a group of volunteers who live with some sort of disability themselves or some sort of neurodiverse condition who always feed into us and tell us the kind of things that are important to them.

EMMA - Wow. I mean, it sounds like a festival utopia, but you're moving. You're moving from Devon to Sussex to make it even more accessible. What extras will you be able to provide there that you're not doing now? Because I can't think of anything.

POLLY - First of all, it's more accessible in terms of public transport. So we're 5 miles from a train station and we'll be doing a deal with a local minibus company because what we've noticed is people don't always have cars. People can't afford cars. The second part is it's a completely flat site, which is unusual for a festival site. So there's no hills or bumps. It's completely flat. And there's actually proper tarmacked small roads in between the different fields. So if people have wheelchairs, it's a lot easier for them to navigate. And I often hear from people who live with disabilities that that can be the hardest thing, just getting there in the first place.

EMMA - What are the headliners for this year's festival?

POLLY - We're more of an experience festival, so although we do have music and comedy in the evening, so we have lots of activities throughout the day, including wild swimming, we do stand up paddle boarding, we have some amazing poets and authors come and talk.

EMMA - I mean, asking for a friend, Polly, if you're not a lesbian or non-binary, can you still go?

POLLY - You can. We get, in fact, one of the things that's been really interesting this year is we've seen a lot more people asked to come who are just women because they want to be in a safe space. There's no litmus test. We're not testing you when you come in. We're not asking you 10 gay questions to find out if you know the answers to them.

EMMA - What would those questions be, Polly? To get your citizenship, to get your Out and Wild citizenship?

POLLY - Have you watched series three of The L Word or something like that?

EMMA - Paul, this festival sounds kind of perfect, does it?

PAUL - Yeah, a lot of the things we'd encourage festivals to do, Polly's talking about there. And certainly, three of the big things I think Polly picked up are the importance of clear, accurate information, the importance of someone actually doing a walk around the site and looking at what is the customer journey, what does need to work. So often people just don't think about the customer journey.

EMMA - I should say that Paul is a deputy CEO of Attitude is Everything, which is an organisation with a long history of working to improve festivals and live music for disabled people. How do you think this EHRC directive that Annabel Rackham was talking about could improve things for disabled people at festivals?

PAUL - I think it's really important in the sense that it's the first time really there's been a very clear consequence that if you're not making things accessible then, you know, the EHRC will take action. But I think one of the major things for us is, earlier this year, the government commissioned a fan-led review of live music, and there's quite a few recommendations around accessibility within that. And a really big thing is actually establishing what a reasonable adjustment actually is, because the problem with the Equality Act is that essentially you can make reasonable adjustments, but it doesn't define them. And then it's very often, unless customers feel confident and have the resources to kind of take people to court, but to be honest, nobody really wants to happen. It isn't great for anyone. There's very often not clarity around what a reasonable adjustment actually is. So I think a really big thing the EHRC could do is actually clarify, these are what we expect venues and festivals to be doing.

EMMA - And what do you think should be on the EHRC's list of reasonable adjustments?

PAUL - So I think certainly, personal assistant tickets, certainly accessible campsites. I think a big thing with festivals where there is a need for clarity is around assistance dogs. I think that's often where there's customer complaints and confusion because, you know, the EHRC's guidance on assistance dogs at the moment, it's very much based around how it works within kind of cafes and smaller space it is and what's not kind of talked about within it is what's needed to make it safe there to be an assistance dog where there's a large amount of crowd movement. I think that does create quite a lot of ambiguity, which can cause confusion. I think as well, British Sign Language, there was obviously the case around Little Mix a few years ago in terms of where a deaf gig goer who was going to watch a Little Mix gig and the support band didn't have BSL provided for them and they did take a case to court and there was a ruling around British Sign Language needing to be provided for both the band and support act. But I think at festivals there's still some ambiguity.

EMMA - They're all really interesting points and especially the assistance dog one is something I hadn't thought about. But you know the flip side is that I'm beginning to hear more and more people complaining that non-disabled people or people who don't need certain bits of access are taking it from people who do.

PAUL - I think it's very difficult and it's really important to be a bit cautious because obviously a lot of access requirements are non-visible and it's really, really important for people not to immediately assume that just because someone doesn't visibly appear to need some provision, they don't need that provision. What we encourage festivals to do is have an accreditation system such as a particularly coloured wristband so that anyone who's kind of demonstrated their access requirements has that wristband to say you need that provision. It's not, you know, because it's simply a colour rather than saying anything. It's not sort of intrusive.

EMMA - Yeah, it's not a big hooter going, I'm disabled and I need something.

PAUL - Exactly, but what it does do is it stops sort of stewards or security guards making decisions kind of on the spur of the moment based on appearances.

EMMA - Fair enough. Now, Paul, you mentioned that you have invisible, non-visible disabilities, I think we're saying at the moment, but you are obviously massively into live music and festivals. What was your experience?

PAUL - For me personally, it's got enormously better in the sense that I've got bladder and bowel conditions where I need to use a toilet which is, you know, kind of plumbed in and has got a reasonable amount of space to it. When I was a teenager, my friends would go off to festivals and I couldn't go. And I think the difficulty which people sometimes miss is if you're not going to a festival with your friends, it's not just just you not seeing live music. You're 16, 17, your friends are all going off and kind of bonding together somewhere. And we know that a lot of disabled people experience higher rates of loneliness. And if you can't be at those places where you can make friends, that has a massive impact. So the fact that now lots of festivals have got high dependency units or, you know, kind of mobile change places, toilets, has been genuinely transformational for me.

EMMA - Oh, that's really lovely to hear, actually. Attitude is Everything has a survey at the moment. What's it about and how can people get involved?

PAUL - Yeah, we've got our State of Access survey. Every couple of years we try to do a survey and a report to highlight key issues with accessibility across the music industry for artists, professionals and audiences to understand what's working well, what areas we want to call on the music industry or the government to do things differently. So we've got that survey running at the moment.

EMMA - And how can people get involved?

PAUL - So it's at attitudeiseverything.org.uk/industry/state-of-access-survey/

EMMA - And if you are disabled, neurodivergent, deaf, and if you've got a festival coming up that you're going to, would you mind dropping us an e-mail and letting us know how you got on, whether all of these guidelines and directives are making a difference on the ground? Give us a shout, accessall@bbc.co.uk. And thanks go to Paul Hawkins, to Polly Shute, to Kate Graham, Beth Maybury, and of course, BBC's Annabel Rackham.

MUSIC

EMMA - Okay, Beth Rose, back in the house, ready to go through some of the disability stories from the last month.

BETH R - Absolutely.

EMMA - One of the big ones has been the heat, hasn't it? It's been really hot for people.

BETH R - It has. Obviously, we were recording right now when it is still hot, but when you listen to this, it might be cold, so forgive us if it is now raining and chilly, but it has been incredibly hot all over the UK, with the odd exception, Emma, where you were.

EMMA - Yes, actually. On Friday, my children were allowed to go into school late because of a massive, massive thunderstorm. So while everyone else was sweltering, my kids were looking at a storm out the window. There's likely to be another heat wave, that's what the weather people say. So I think it's always good to kind of have a think about how the heat affects you if you're disabled or if you're taking medication. Even looking after your medication in the heat is a big thing, isn't it?

BETH R – It is. It can actually have quite a big impact on medicines and even mental health conditions. So Rethink Mental Illness, which is a charity, put out some warnings during the heatwave around antipsychotics and antidepressants, particularly those called SSRIs, which stand for Selective Serotonin Reuptake Inhibitor. Know what that is, Emma?

EMMA - I do. It's to help your mood.

BETH R - It is, yes. So it increases the serotonin levels in your brain, which improves the symptoms of depression. But it really impacts how your body can regulate temperature and even sweat. They say, stay hydrated and also stay indoors during the hottest part of the day where you can.

EMMA - So I did a social media video about this, which we spoke about at the beginning of the programme and actually got quite a few people texting me and messaging me saying, I'm so glad to understand why this is happening to me and I didn't know this about my medication. So I think reading the packet is like a big flag there to go back and read your medication packet.

BETH R - Certainly as the temperatures increase and as you said a minute ago, Emma, we're expecting more heat waves this year and also as the years go on. But also the Medicines and Healthcare products Regulatory Agency, the MHRA, they're basically the UK's official body responsible for making sure that all medicines and medical devices work properly. They say the heat actually damages and breaks down the active ingredients in medication and that's what stops your body being able to absorb it. And it can impact all sorts of things from tablets to inhalers, hormone patches, insulin. So this impacts a lot of people. And what you need to do, okay, so it sounds quite simple to begin with. Basically, your medicine shouldn't get hotter than 25 degrees. So if it's hot outside or say you're travelling on the train or in a car, it can get really, really warm, so you should keep it in a cool bag. But what I didn't realise is actually your handbag and your pockets, which you might slip the medication into, can also exceed 25 degrees and then impact the medication.

EMMA - I can kind of understand that people were frying eggs on pavements and making meringues on outside tables and all that. So it sounded like it was incredibly hot.

BETH R - The other thing that you should look out for, apparently, is if the colour of your tablets change, if they smell a bit funny, the texture can change as well, or they just look a bit different to you. At that point, you need to contact your pharmacist or your GP.

EMMA - Okay, good advice. And I was talking to our friend, Sally Hurst, who is a sports presenter at BBC. She's an amputee. She's lost a leg through cancer. And I rang her and she was sitting in front of a fan and her voice sounded genuinely strained. And she said she was really, really struggling. And she said basically it takes her 60% more energy to get around than other people. So that's making her really hot. But also it's causing problems with her prosthetic limb, where the socket is getting wet from sweating and it's losing suction and she's really worried about her legs slipping off as well. Yeah, and the other thing she said was because you've got less body area, you've got less space on your body to lose heat through sweat.

BETH R - There are so many elements to it. The best way I have learned to handle it is I have a constant supply of ice poles in my freezer.

EMMA - And the best way I've found to handle it is move to Scotland.

BETH R - Yeah, there's that as well.

EMMA - Now, Beth, you are bringing us a little trilogy of reports here on Access All, a bit Lord of the Rings-like. Tell me about this month's report.

BETH R - Yes, so a parliamentary committee is producing three reports on the theme of disability and work. And I did liken it to the Lord of the Rings because we all need a little bit of jazz in our lives. But last month we looked at a report called Disability at Work and its big thing was that reasonable adjustments when you apply for them in your workplace to support you and reduce any barriers, you should find out within two weeks whether yes, they can support you in that way, no they can't or they're going to look into it, which was really, really exciting. We're still waiting to hear the government's response to that. This time we have the second report and it is all about Connect to Work.

EMMA - There are quite a lot of work-related schemes. It gets kind of confusing. What is Connect to Work in all this?

BETH - So Connect to Work is a voluntary programme. It's 12 months of tailored support such as job matching and workplace adjustments again. And the ambition is that 300,000 people will be supported back into work by 2030. But you are right, there are so many different work programmes out there. So I'm just going to tell you a few and you'll probably be familiar with all of them to be fair. The first is Access to Work. So that provides grants for equipment, job coaches, interpreters, and that's to help reduce those barriers in any workplace. Then you've got the Work and Health Programme, which offers personalised support to help disabled people find and keep jobs. You've got the Disability Confidence Scheme, which is for the employers to help improve hiring and retaining disabled talent. And also you've got Job Centre Plus Support, which is where you have specialist advisors who can help match disabled people to job in the job centres. And I'm going to give you one more, Emma, and that is Work Well, which is a more holistic approach to support people getting back into the workplace after they've maybe navigated some sickness or other health challenges. And that one is more linked to getting support with physiotherapy or counselling. So it's kind of practical support to get you back into that workplace.

EMMA - Okay, I've got some advice for the DWP. Maybe they should roll some of these in together. This is too hard. This is so, confusing.

BETH - Well, I mean, one of the suggestions is that perhaps Connect to Work and Work Well could be combined in the future.

EMMA - You see, you see. You see, I should be on that committee. Listen, it's been reviewed by the Department for Work and Pensions Select Committee. What did they find out?

BETH - So yes, so the committee is cross-party and what they found is basically Connect to Work has been pretty successful and the success of it is down to the fact it's voluntary. So people aren't being made to do Connect to Work. The West London Alliance, they represent 7 boroughs of London. They say they get 2,000 expressions of interest every month to join the scheme.

EMMA - So that's a lot of people, a lot of disabled people.

BETH - Exactly. And then the other positive is they have a real emphasis on what they call place, train and maintain. So basically helping people into jobs and getting them going and them staying in them rather than incentives with payment by results. So in this report they talk about creaming, where previously different support schemes might just pick and choose the best candidates, people who didn't need that much support, and then they'd be paid because they'd done a good job on getting people into work. But actually they weren't helping people really. So the positive here is that it's all about those that can get into work, be supported and stay in the job. But it's not all good news. The main downside is the administration is too complex, it's too inconsistent, Essentially, they want to get this programme up and running really quickly. And so a lot of contracts are awarded to local authorities who get it going because they've got the manpower. But it does mean that some of those smaller, more specialised organisations who can't keep up with the admin demands are then sort of cut out of this Connect to Work system. So they want that to be improved and reduced.

EMMA - Okay, so what happens next?

BETH - So it's currently funded until 2030, but the committee says it needs to make a decision, the government needs to make a decision sooner rather than later on whether it's going to keep going with Connect to Work. And they want to review it in the next year as well, just to check that kind of administration and consistency is working.

EMMA - Okay, and I do think it's really interesting to keep following this and keep following what the government are doing, because we've got the Milburn report coming out about getting young people into work. We've got the Timms review into personal independence payments coming out at the end of the year. The government's really keen to close up that disability employment gap. So let's keep monitoring what they're doing and see, you know, whether any of this is actually going to work or not.

BETH - Exactly. So some of our favourite words, Emma, it's the watch and wait season.

EMMA - Well, we'll be watching and indeed waiting. If you've got any thoughts on any of this, on heat, on... employment programmes or work, you can e-mail accessall@bbc.co.uk.

What if Colin, from the children's classic, The Secret Garden, didn't need to walk or be well to receive his father's love? And what if Mary, instead of being seen as spoiled and unsightly, as it says in the original book, she's actually autistic and misunderstood by the adults around her? Well, more than 100 years after the book was published, The Secret Garden has been reimagined for the stage at the Egg at the Theatre Royal Bath, with disability even more front and centre than it was in the original book. I'm joined by Tom Wentworth, the writer, and he's known for shows like Ralph and Katie, and he writes for Waterloo Road, and also Daneka Etchells, who plays Martha in the play. And you might have seen her at Shakespeare's Globe in Titus Andronicus. Hi both, how are you?

DANEKA - Good, how are you?

EMMA - I'm very well. Tom, for people who haven't read the book, can you just give us a little summary of the story of the Secret Garden?

TOM - Mary Lennox, who is a 10-year-old girl, comes to live with her difficult and unknowable uncle in a big house called Misselthwaite Manor, and she discovers that the house is full of secrets, locked rooms, places that she mustn't go, rules that she needs to follow, and she then discovers that there's been this garden, this secret garden. So she becomes very interested in that, but she also finds that she connects with the grounds around her. So she becomes interested in gardening and she goes on this quest to find the garden. But as well as that, she hears this crying throughout the house and she wants to find who that is and then discovers that she has a cousin and finds that basically she doesn't want to find the garden just for herself, but she wants to find the garden to help her cousin Colin as well. So it's a show about friendship. The book ends with a disabled boy who's been bed-bound seeking the approval of his father by shock, horror, walking. And that always seemed to me not only problematic, but reading it as a child, I would get three-quarters of the way through the book, think, this is about me. I've been in hospital as a child. I've been bed-bound. And then it's not about me at all. That doesn't follow my story. So we wanted to take that story and reimagine it for a contemporary young audience and give them a bit of disability joy at the end.

EMMA - And Daneka, you play Martha. Tell me a bit about Martha's character and what she's like and then tell me about playing her with your mobility aid and your impairments.

DANEKA - It's quite easy to play Martha because she's a bit gobby and I'm quite gobby. I'm quite talkative, I'm quite chatty and my mouth can definitely get me into trouble and I think that's definitely the same between me and Martha. I think she also there's a heart on her sleeve and I think she doesn't fit in either. She's one of the workers at Misselthwaite Manor, yes, but it almost feels like she's always getting it wrong or she's always in the wrong place and she doesn't quite know how to socially and I guess with her class how to fit in this space. All of the children feel otherness, for whatever reason and it feels like they can find that connection together. It feels really nice to talk about disability from, I guess, a working class perspective. That's something I'm always on my high horse about. I feel like sometimes... disability can be shunned into quite affluent spaces or privileged spaces and there's not a lot of us from working class backgrounds who are as artists.

EMMA - Why do you think disability is pushed into kind of middle class and you see more maybe middle class disabled people on TV as contributors to things than disabled working class people?

DANEKA - The biggest imposing barrier to being an artist is money, affluence, and class. I think it's about your financial privilege, and I think it's about this innate class identity that is taught to middle class and affluent people from a very young age about how to be an artist and how to conduct yourself in these spaces. And therefore, the retention of middle class and upper class disabled people is much more than it is of working class people, because we drop out earlier on. It's also about access to theatre, access to literature, access to arts. And I think that's harder when you come from a working class background or you come from somewhere of no geographical privilege as well. Like myself, I come from Cumbria, so there's not really much going on there as well. But I guess sometimes you can be really autistically headstrong like I am and just go for it anyway. But I don't always think that everybody has that.

EMMA – That opportunity or that sort of push within them. And you find, I mean, even when you were younger and your disability has changed over time. Do you think that it was even in terms of not necessarily arts, but in terms of kind of services and all that kind of thing, do you think working class found it hard to cut through to get what you needed as well?

DANEKA - Absolutely. I think there's something to do with how working class people deal with conflict and deal with difficult situations that can be quite affronting to the way that things are. And we can be seen as difficult or we can be seen as obstructive or intrusive in ways that I think if you have a class privilege, you don't. And therefore, I think access to services like mental health or health services, they get delayed and delayed and delayed, delayed and delayed because you're not believed or your insight or your lack of your perceived lack of education that. It doesn't exist always.

EMMA – Tom that's a pretty interesting conversation, isn't it? The Secret Garden is not just going to be in the theatre, is it? There's some outreach going on as well.

TOM - There have been wonderful boxes designed that have little gardens in them and play specialists can go and play with the children who are in long-term hospital and then they get a QR code and they can watch a beautifully filmed version of our show, which is fantastic. And then there's a primary schools project, a secondary schools project. The kids get to come from the schools that have had the input into their classrooms and their school time, and they come to see the show in the theatre. So it's a real conversation. It's become about the children investigating, in hopefully a very playful way, the social model of disability and what it means to truly make a garden and to make the climate indeed. I mean, we've just, we're recording this after a week of extreme heat in the UK. And I don't know how other disabled people manage, but the effect of climate change on the disabled population is going to be far worse for many.

EMMA - In terms of the social model, it's people being disabled by barriers put up, like steps instead of ramps, et cetera, rather than the medical model, which says that you're disabled because there's something wrong with you and there's something medically wrong with you. That's the basics, I think, of the social model. Mary, let's go back to just the character briefly, because I've been rereading the book for this interview, and you've got Mary as autistic and able to show her autistic joy. Maybe you didn't necessarily have the term autistic in your head as a kid, but when you read the book as an adult, did you think Mary's actually autistic?

TOM - I did. It seemed completely clear to me from the book, and Daneka is nodding her head in agreement.

EMMA - So, Daneka, what is it about Mary in the show that shows you that she's autistic?

DANEKA - It's the way that she perceives the world and the way the world perceives her and the, I guess, the bluntness and the directness that she has and her need for answers and her need for why and her need for rules and support and her need for time, and her need for patience. I think it's all in there. And I was having this conversation with my mum actually yesterday. I was saying, people say we didn't have autism back then. And it's like, you did, you just had different words for it. You had obstructive, you had difficult, you had crybaby, you had all these different words. But now we have a medical term that gives people autonomy and gives people a sense of belonging and takes away the shame and the guilt.

TOM - And we have dug into the medicalisation of that, because you've got a character from the book, you'll recognise him, Dr Craven, who is Colin's uncle, and comes in and gives all those messages of difficult, obstructive, and Mary gets to refute that in our production along with Colin. So it's a bit of power to the people.

EMMA - Okay, your characterisation of the doctor, is that based on experiences that you've both had growing up as disabled people as well?

TOM - Certainly, certainly I have.

EMMA - In what way?

TOM - Well, the not being listened to. That's one of the things that we pull out big time in the play, being what we would now call, I suppose, medically gaslit as an adult and also as a queer adult, an adult who identifies as a queer person. I've definitely been medically gaslit. I've certainly been medically gaslit within the last year. And so it was wonderful to be able to put that on stage in the mouths of intelligent children and hopefully it won't to happen to them because some children will come to the show and they will have the language to recognise that those kind of things are or could potentially happen to them.

DANEKA - And I think as well that being medically gaslit has real life ramifications. I was medically gaslit for a very long time, for about 15 years. I wasn't believed by the doctors, which has led to me having a physical mobility impairment. And I think people need to realise that children need to be listened to from the first point of contact, and that language around illness, sickness and disability needs to be made really clear and really accessible to young children so that they know how to advocate for themselves. Because at the moment we have such an adult medicalised view of what sickness and disability looks like that means that children don't know how to access the support that they have. And I think this show really shows of how collectively, this group of children can stand up for each other as well. But the magic isn't curing Colin and making him walk. The magic is into community support and collective access, I guess.

EMMA - So do you mean, Daneka, that basically because you weren't believed by the doctors, you feel that it actually led to a mobility impairment? Maybe you wouldn't have had one if you'd been believed earlier.

DANEKA - That is factually true, yeah. I have a condition called endometriosis. That means that I have lesions that grow on the inside of my body. It grew so vast and so wide that it's grew permanently on nerves and ligaments that are attached to my legs that even when it's been removed, it's caused permanent damage, which means I have a permanent physical disability from that. Women and people who are born with vaginas and cervixes, they don't realise that endometriosis can push it that far. It is a real thing that can cause impairment, it can cause long-term damage. I think that's why I feel so passionate about this show, because to be medicalised and not supported is Colin's very experience. And I guess if I'd had community, perhaps I would have had more strength in my voice to be heard earlier.

EMMA - Kids from six years and up can go to this play and it really digs into quite a few disability issues. Listen, if Frances Hodgson Burnett was watching the play, what do you think she'd make of it, Tom?

TOM - I hope she'd be pleased. She wrote the book out of a real period of grief herself. She'd lost a child. And so I hope she would be pleased with the joy that we bought to her book. I really do.

EMMA - The Secret Garden is at the Egg Theatre Royal Bath from the 2nd to the 26th of July. Daneka Etchells, Tom Wentworth, thank you for joining me on Access All.

TOM - Thank you.

DANEKA – Thank you so much.

MUSIC

EMMA – That is almost it for this episode of Access All. But before I go, I just want to say thank you to everybody who emailed after Kateryna Pavlyuk's piece on last month's podcast around accessibility in courts. Kateryna talked mostly about wheelchair users and we had Ruth e-mail us and tell us that she had four hearings to go to recently. And she's a wheelchair user and needed accessible parking. And she had to leave hours and hours early and just drive round and round and round the town to try and jump into one of the two accessible parking bays that are near enough the court for her to be able to get there safely. So thank you, Ruth, for telling us your story. But it wasn't just wheelchair users who emailed in. We had quite a few people saying that their reasonable adjustment requests weren't met. And we had Laura, who was a solicitor when she experienced sight loss. And one of her first cases after the sight loss, she managed to get a taxi there so that she'd be right outside the court. And then she went to the ladies before the case began. And the door on the way out was fully glossy white with no way of knowing where the handle was to get out. And Laura, because of her newly acquired sight loss, could not find out how to get out of the ladies. And she says she lost the case and then lost her job and was seriously humiliated. And do you know what? The thing is, a lot of reasonable adjustments are so tiny that a bit of surface contrast between the door and the handle would have massively helped Laura, who was already struggling.

Thank you to everyone who told us your stories. And thanks to you for listening to this episode. We've had such a lot of fun talking about festivals.

You can e-mail accessall@bbc.co.uk to get in touch with me. Tell me anything you want to about this episode. Tell me what we should include in the next one. I absolutely love to hear from you. You can subscribe to us on BBC Sounds and I will see you again next month.

Bye.