91热爆

听

04th August 2023

bbc.co.uk/accessall

Access All 鈥� episode 64

Presented by Nikki Fox and Emma Tracey

听

听

EMMA-听听听听听听听听听听 People have been throwing stuff at popstars on stage.

NIKKI-听听听听听听听听听听听听 Yes, they have. I鈥檝e noticed that.

EMMA-听听听听听听听听听听 Drinks. Ashes apparently.

NIKKI-听听听听听听听听听听听听 Ashes?

EMMA-听听听听听听听听听听 A phone. And I just wondered if you鈥檙e at Edinburgh on the 18th August and someone throws something at you on stage what would you do?

NIKKI-听听听听听听听听听听听听 Well, I mean if it was something like a piece of underwear or some roses, you know I鈥檓 very needy鈥�

EMMA-听听听听听听听听听听 So, you鈥檇 be happy with that?

NIKKI-听听听听听听听听听听听听 鈥�I鈥檇 lap that up, yeah.

EMMA-听听听听听听听听听听 It would need to be an easy to put on bralette, wouldn鈥檛 it?

NIKKI-听听听听听听听听听听听听 Well no, you don鈥檛 put it on Ems. You don鈥檛 wear it. You just keep it and you鈥檙e like, oh someone chucked a bra at me, great story. But something with like hard edges that would do some damage I think my natural reaction would be, 鈥極i, what are you doing?鈥�

EMMA-听听听听听听听听听听 Well, you see, I wouldn鈥檛 see it coming for a start.

NIKKI-听听听听听听听听听听听听 No, you wouldn鈥檛, no. I would be like the people that protect the President, but I would literally throw myself off my scooter onto you and I would take you down, and the object would just skim passed our heads.

EMMA-听听听听听听听听听听 Because I just wonder what kind of things people would throw.

NIKKI-听听听听听听听听听听听听 You鈥檝e given this a lot of thought, Ems. I don鈥檛 expect we鈥檒l have anything lobbed at us. Or we could do 鈥� well I couldn鈥檛 鈥� but you could do a stage dive.

EMMA-听听听听听听听听听听 I could. And someone told me the other day that when Adam Hills wants to crowd surf鈥�

NIKKI-听听听听听听听听听听听听 He takes his leg off.

EMMA-听听听听听听听听听听 鈥�he takes his leg off!

NIKKI-听听听听听听听听听听听听 I saw that the other day. But no one鈥檚 getting my scooter.

MUSIC-听听听听听听听听听听 Theme music.

NIKKI-听听听听听听听听听听听听 It鈥檚 August and we are back for the latest instalment of Access All, the podcast all about disability, mental health and everything else. I鈥檓 Nikki Fox and I鈥檓 in London.

EMMA-听听听听听听听听听听 And I鈥檓 Emma Tracey and I鈥檓 still in Edinburgh, but you will be joining me very soon, Nikki Fox!

NIKKI-听听听听听听听听听听听听 I know.

EMMA-听听听听听听听听听听 It鈥檚 for our Access All Edinburgh Live Show at the Edinburgh Festival Fringe. And I cannae wait. There are only a few tickets left so please go and snap them up as quickly as you can by going to the 91热爆 Shows and Tours website.

NIKKI-听听听听听听听听听听听听 I鈥檓 really excited to see you, Ems, because we鈥檒l be [singing] reunited, and it feels so good. But first there鈥檚 the small matter of getting this podcast done, so here we go.

Do you ever feel horribly rushed when you visit your GP? Yes, we are going to be talking all about that. It seems some of the doctors in our lives feel exactly the same way. And we鈥檒l be looking at the impact Etsy鈥檚 new payment system is having on disabled entrepreneurs.

EMMA-听听听听听听听听听听 And the best-selling author, Elle McNicoll visited us in the studio to talk about life and work and everything else. Subscribe to us wherever you get your podcasts, hit the like buttons, tap them gently if you prefer, click them, scratch the phone with your nails while you鈥檙e doing so if you鈥檙e anything like me, and tell a friend to tell a friend to get the 91热爆 Sounds app to hear every single episode we鈥檝e ever, ever done. Now, on with the show.

听听听听听听听听听听听听听听听听听听听听听听听听 Nikki, I鈥檝e just been wondering, have you ever tried changing your diet to help with your muscles at all?

NIKKI-听听听听听听听听听听听听 [Laughs] Em, no, Emma. I鈥檝e taken a couple of vitamins that I think might help; maybe a little bit of co-enzyme Q10 or, I don鈥檛 know, selenium or something; apparently it鈥檚 very good for muscular dystrophy. So, I have done some reading around this. But no, I don鈥檛 for one minute think that that鈥檚 going to improve my physical ability.

EMMA-听听听听听听听听听听 How do you feel about me asking that? Because actually you鈥檝e just been ablesplained.

NIKKI-听听听听听听听听听听听听 Have I?

EMMA-听听听听听听听听听听 Yes.

NIKKI-听听听听听听听听听听听听 Have we got another word I need to get my head around?

EMMA-听听听听听听听听听听 Yes, because it isn鈥檛 in a regular dictionary. It is kind of like built on the idea of mansplaining.

NIKKI-听听听听听听听听听听听听 Right yes, very patronising.

EMMA-听听听听听听听听听听 Where a man tells a woman about a woman related thing as if the man knows better than the woman. And it鈥檚 the same for ablesplaining. And the urban dictionary says that ablesplaining is an explanation of any aspect of disability from someone who does not have the lived experience 鈥� we love that phrase 鈥� who doesn鈥檛 have a disability it鈥檚 basically saying, and is usually given in a sort of patronising and with a sense of enormous justification for doing and without you asking basically.

NIKKI-听听听听听听听听听听听听 Okay. Give me some examples, Em?

EMMA-听听听听听听听听听听 I came across this term, I actually did a little searchy-search, and it goes back to at least 2013 but I鈥檝e not really heard it before. And you know me, I love learning about disability related things like ableism, internalised ableism, uh, you know.

NIKKI-听听听听听听听听听听听听 We鈥檙e not alike in that way are we? [Laughs]

EMMA-听听听听听听听听听听 No, we鈥檙e not; we鈥檙e totally different in that way. But anyway, Tanni Grey-Thompson, the Paralympian/legend鈥�

NIKKI-听听听听听听听听听听听听 Yeah, I love her.

EMMA-听听听听听听听听听听 鈥�baroness, she put up a poll on Twitter, a vote, and she asked disabled people if they鈥檇 ever been ablesplained at, and 1,300 people responded 鈥� which is more than the amount of people that YouGov usually get in their surveys, right.

NIKKI-听听听听听听听听听听听听 More than my Instagram followers.

EMMA-听听听听听听听听听听 Because she is a legend.

NIKKI-听听听听听听听听听听听听 Yes.

EMMA-听听听听听听听听听听 45% of them said that they had had ablesplained and only 9% said they鈥檇 never had it. Anyway, people responded to her tweet. She said someone asked her if she just got tired of walking. She just got tired of walking, imagine, right.

NIKKI-听听听听听听听听听听听听 Did someone actually say that to her?

EMMA-听听听听听听听听听听 Someone actually said that to her.

NIKKI-听听听听听听听听听听听听 Wow.

EMMA-听听听听听听听听听听 Someone responded to her tweet saying that they don鈥檛 have the regular bone structure in their knees and legs, and someone asked them had they ever tried drinking more milk. Okay, those bones need calcium.

NIKKI-听听听听听听听听听听听听 Oh my goodness!

EMMA-听听听听听听听听听听 And they said, 鈥極h my goodness, why didn鈥檛 I think of that, it would have saved me from the 60 operations that I鈥檝e had to help me walk鈥�.

NIKKI-听听听听听听听听听听听听 Someone said that?

EMMA-听听听听听听听听听听 Yeah. And even in our team our Keighley鈥�

NIKKI-听听听听听听听听听听听听 Yeah, love Keighley, big up Keighley.

EMMA-听听听听听听听听听听 鈥�yeah, Keighley was told by a yoga teacher that she should stop taking her leukaemia medication and treat it with herbs instead.

NIKKI-听听听听听听听听听听听听 [Astonished laugh]

EMMA-听听听听听听听听听听 So, that鈥檚 basically the crux of ablesplaining.

NIKKI-听听听听听听听听听听听听 I get it, I totally know what ablesplaining is all about now.

EMMA-听听听听听听听听听听 So, have you been ablesplained?

NIKKI-听听听听听听听听听听听听 I don鈥檛 know. I must have been. I鈥檓 sure someone鈥檚 told me something to do with, you know, working out will improve my ability to move better, you know, the usual I鈥檇 imagine.

EMMA-听听听听听听听听听听 I鈥檝e just been told that there are cures for being blind and why don鈥檛 I check them out.

NIKKI-听听听听听听听听听听听听 And also as well I know that this is a real problem for a lot of people who have got invisible disabilities and is it like EDS, chronic pain and all of that kind of stuff. I know that so many people have told me that they get people telling them more herbs, more multivitamins and it can all be cured, have some celery juice.

EMMA-听听听听听听听听听听 I鈥檓 sure herbs have their place and supplements have their place, but the disabled person鈥檚 probably thought it through.

NIKKI-听听听听听听听听听听听听 Okay. Well, at least I know what ablesplaining is now, Emma.

EMMA-听听听听听听听听听听 It鈥檚 just made me want to sing [singing] I am your mother, listen to me; I am disabled, listen to me; stop all that ablesplaining.

NIKKI-听听听听听听听听听听听听 Have you ever bought anything from Etsy? Because I鈥檝e been eyeing up some furniture.

EMMA-听听听听听听听听听听 Have you?

NIKKI-听听听听听听听听听听听听 I actually have, yeah.

EMMA-听听听听听听听听听听 I haven鈥檛 because I always think a lot of the stuff on there is very visual because it鈥檚 about bespoke clothing and all that kind of stuff, whereas I鈥檓 a very safe clothing wearer, as you know. Anyway.

NIKKI-听听听听听听听听听听听听 It鈥檚 an online marketplace where people sell stuff, often kind of crafty stuff. We know that many sellers on there are disabled so we were interested in the story this week about a potential Etsy boycott. Now, the action is being suggested because sellers have said that Etsy has been freezing large percentages of their takings. The company said it鈥檚 to build up reserves to cover any potential refunds, but many sellers are living hand to mouth, with Etsy as their only source of income. So, not having access to their takings is leaving people in debt and unable to buy the materials they need to keep on working.

EMMA-听听听听听听听听听听 I know of loads of disabled people on Etsy, a lot of people on my social media, a lot of people who can鈥檛 work in a 鈥渞egular鈥� job. Why is it that Etsy works so well for disabled people?

NIKKI-听听听听听听听听听听听听 Some disabled people prefer to be self-employed because they can work flexibly, and some can鈥檛 physically sit at a desk all day or fit into the norms of the working environment. That鈥檚 actually the case for Dan from Buckinghamshire who runs a bespoke wooden furniture business. Esty is currently withholding more than 拢6,000 of his money, and he says it鈥檚 exacerbating his mental health condition.

DAN-听听听听听听听听听听听听听听 I mean, it鈥檚 making my life incredibly stressful which, as I said, doesn鈥檛 make me the most pleasant person to be around. I mean, I don鈥檛 even like myself at the moment. It鈥檚 kind of a spiralling issue because they never stop, so it never stops, so it just keeps getting worse and worse and worse. Because I don鈥檛 sort of get a break to recuperate it just keeps spiralling down essentially.

EMMA-听听听听听听听听听听 Another disabled artist got in touch and told the 91热爆 that 鈥楨tsy has around 拢500 of my money currently held in reserve, and I am having to pay for the postage out of my own pocket as they include postage taken in the reserve total. I鈥檓 unable to pay my bills and I鈥檓 desperately unwell and depressed over this entire situation鈥�. So, what did Etsy say about all of this?

NIKKI-听听听听听听听听听听听听 Well, they鈥檝e now announced they will change this policy after all of the complaints it鈥檚 had. And on Thursday Etsy said it was substantially decreasing the amount of money it would put on hold. But it didn鈥檛 reveal the new rate or timeframe. One to watch. We鈥檒l keep an eye on that.

EMMA-听听听听听听听听听听 Tell us your thoughts on this or anything at all in all the usual ways. You can email us on accessall@bbc.co.uk.

NIKKI-听听听听听听听听听听听听 As a disabled woman this next story is something that I can really relate to. A survey of more than 1,000 NHS staff found that 71% of frontline workers feel they don鈥檛 have enough time to properly attend to patients due to their overwhelming workloads. For disabled people with mobility challenges, like myself, or learning disabilities that feeling of being rushed can be a real problem when you see a medical professional. Emma, you have been doing some digging, haven鈥檛 you? What did you find?

EMMA-听听听听听听听听听听 So, a survey that was conducted by YouGov for the Guardian found that 75% of NHS staff believe that the quality of care provided by the NHS has declined over the last five years. This lack of time and staffing shortages have contributed to feelings of moral distress among medical professionals. And the British Medical Association told us that its staff are stretched to breaking point.

NIKKI-听听听听听听听听听听听听 But what about the patients? Joining us today to discuss this are Dr Georgie Budd, a GP and co-chairwoman for junior doctors at the British Medical Association, or the BMA, in Wales. She also happens to be a wheelchair user. Hello Georgie.

GEORGIE-听听听听听 Hi, how are you doing?

NIKKI-听听听听听听听听听听听听 Thank you for joining us. I鈥檓 doing all right. I鈥檓 really looking forward to chatting to you. We鈥檙e also joined by Dan Scorer. Dan is the head of policy, public affairs, information and advice at the learning disability charity Mencap. Hello Dan, so lovely to have you on.

DAN-听听听听听听听听听听听听听听 Thanks very much. It鈥檚 great to be with you.

NIKKI-听听听听听听听听听听听听 I was saying that I can completely relate to this story because as someone who鈥檚 physically disabled, and I鈥檝e been having to go to quite a few of those appointments, the smear tests and the boob checks and all the things that we absolutely have to do, and you do feel slightly under pressure. Especially once I was getting my boobs checked and I was feeling under pressure to get the arm up, get the top off, do all of that, because you know that obviously the people that work in the profession are so stretched for time. I mean, Georgie you鈥檙e in such an interesting position as both the doctor and a patient. But firstly as a patient, let鈥檚 start with that, what鈥檚 your experience?

GEORGIE-听听听听听 There are so many different stories that I could tell you about interacting with the healthcare profession as a disabled person, not just in the wheelchair but I鈥檓 also neurodivergent, and things sometimes take a bit more time. And that鈥檚 completely acceptable. But you鈥檙e right, the medical professionals are so stretched. So, when for example I went for my smear, the first one that I needed after I was having to use the wheelchair full time, my legs are completely paralysed so they flop around and they鈥檙e in the wrong position, and of course you鈥檝e only got one nurse and everyone else is busy at the GP surgery. My disabilities are fairly complex, I鈥檝e got a spinal cord injury, but that impacts on so many areas of my health. And so as a busy professional then trying to get an appointment that I feel can cover the complexity of what鈥檚 going on with me it鈥檚 really difficult having to try and go through that all in a ten-minute appointment.

NIKKI-听听听听听听听听听听听听 It鈥檚 the timings, isn鈥檛 it? Dan, I know you wrote an open letter saying the situation is especially worrying for people with learning disabilities who often require more time for appointments and already face challenges when faced with accessing basic healthcare, which we know. What have the people you support been telling you?

GEORGIE-听听听听听 What the people we support have been saying is that for them time is such a key issue, it鈥檚 such a key reasonable adjustment for people with a learning disability having the time, as we鈥檝e already talked about, to actually be able to set out what it is that you鈥檙e worrying about, what the issue is that you鈥檝e actually gone to get help with. Time is so pressured. Having to ring your GP at 8 o鈥檆lock on the dot, and if you鈥檙e not on the line in that minute then the chances are you won鈥檛 get an appointment that day. I mean, we鈥檙e all experiencing the same issues with the pressures that we know our NHS colleagues are under.

But for people with a learning disability those barriers that we鈥檙e all facing are that much more significant, especially when as we know women with a learning disability for example 26 years younger in the general population. So, people with a learning disability as a community experience so many barriers accessing healthcare, and when we know staff are under this kind of pressure and time is so pressured it鈥檚 such a key factor in terms of staff been able to have the time to listen to someone, to give them time to actually explain what鈥檚 concerning them. And that we don鈥檛 have things happening like diagnostic overshadowing, where actually really important symptoms are missed because actually they鈥檙e attributed to being about people鈥檚 impairment, which they鈥檙e not, and that can be fatal. So, we are on the side of our colleagues working in the NHS. We all want to see them given the resources to do the fantastic job they do day in, day out. And that鈥檚 an issue that government has to continue to grapple with.

NIKKI-听听听听听听听听听听听听 I鈥檓 wondering of the people you spoke to has it made them feel differently about visiting a doctor, Dan?

DAN-听听听听听听听听听听听听听听 It has. I think that people have felt concerned about lots of issues coming out of the pandemic. One of them has been online consultations, so that鈥檚 something that鈥檚 created a lot of barriers for people who are not able necessarily to access that technology, and who are not able necessarily to follow instructions when that kind of appointment is being offered. So, it's extremely important that people with a learning disability can get face-to-face appointments so that they can actually have that human contact and explain to a doctor what鈥檚 concerning them.

GEORGIE-听听听听听 Not everybody fits in the same box, right? Disability is so broad, as is people, and everybody needs things dealt with in a different way. An autistic patient may need something explained to them in a different way, and you have to think of how to do that.

NIKKI-听听听听听听听听听听听听 And Dan, I was wondering, because a lot of GP appointments they鈥檙e now done on the phone or you have to fill in an online form beforehand to get through, or you have to do at mine anyway. Is that better or a trickier system for someone who has a learning disability?

DAN-听听听听听听听听听听听听听听 Overall I鈥檇 say it鈥檚 trickier. I mean, for some people those other options will be really beneficial and they鈥檒l be happy to take those up and will be really happy with that. But I think for many other people those kinds of technology based solutions about working with apps or online consultations do present a lot of barriers. I think it鈥檚 absolutely vital that we maintain that core right for people to have that face-to-face time with the clinician, which is so important in terms of people having the confidence to go and talk about the issues that are concerning them.

EMMA-听听听听听听听听听听 We did ask the Department of Health about this story and they have pointed out that they鈥檝e launched the first ever NHS long-term workforce plan, which it says will deliver the biggest training expansion in NHS history, and recruit and retain hundreds of thousands more staff over the next 15 years. Now, Dan, what do you think that means for patients with learning disabilities?

DAN-听听听听听听听听听听听听听听 Well, I鈥檇 say it鈥檚 obviously positive, the strategy has finally come out after years of delay. And in terms of what鈥檚 mentioned about supporting people with a learning disability there are good things in it around expanding the learning disability nursing workforce, which is absolutely vital after years of decline in numbers and training places. But I think we have to bear in mind that most of the colleagues who will come to work in the NHS as a result of this strategy won鈥檛 be with us probably for seven or eight years in many cases, so the challenges we鈥檙e talking about today will remain with us for many years.

NIKKI-听听听听听听听听听听听听 Georgie, on a more personal level, what do you think people can do to advocate for themselves in these situations?

GEORGIE-听听听听听 Personally I think approaching your GP sort of indirectly. So, instead of phoning him for an appointment perhaps sending an email or a letter explaining that this is my situation, these are the problems that I have at the moment that need covering, and I may need a double appointment for that. I think the other thing that people can do is thinking through the things that they want to get out of the consultation that they need from their GP, and making a list before you go in; just bullet points of the things that you need addressed. If anyone鈥檚 like me I forget if I go in because I鈥檝e got a million things going on. So, just having that list to refer to is really helpful I think.

DAN-听听听听听听听听听听听听听听 And just on the question about advocacy I would say for people with a learning disability their families and supporters who are listening, make sure you鈥檙e on the GP learning disability register. It鈥檚 so important about recording on the register what the reasonable adjustments are that you need, and later this year the flag on people鈥檚 NHS records showing that they need reasonable adjustments that they have a learning disability is going to be coming out. So, there are some really positive things that are happening and we really need to make the most of the impact of those.

NIKKI-听听听听听听听听听听听听 We contacted the BMA for its thoughts on the survey, and a spokesperson got back to tell us this:

听听听听听听听听听听听听听听听听听听听听听听听听 鈥楴HS staff are telling patients and the public the truth: we are stretched to the limit, stressed and burned out. Our own research has found that many doctors feel moral distress because we cannot give patients the care and support that we want to, with insufficient staffing, a lack of time and mental fatigue all major contributing factors. The government has repeatedly failed to address these issues, which is why we feel there is no other choice but to take industrial action.鈥�

EMMA-听听听听听听听听听听 We also contacted the Department of Health and Social Care, which mentioned the long-term workforce plan which it said would be: 鈥楤acked by over 拢2.4 billion in government funding, this would help relieve pressure on staff and support them to continue providing high-quality care to patients.鈥�

NIKKI-听听听听听听听听听听听听 Thank you Dan, thank you Georgie. A really interesting chat, and we will do more on this subject. But thank you so much for coming and speaking to us on Access All.

MUSIC-听听听听听听听听听听 Access All with Nikki Fox.

NIKKI-听听听听听听听听听听听听 Now, our next guest is best-selling children鈥檚 author, whose debut novel, A Kind of Spark, won all the prizes going when it was released in 2020 including, I love this, the Blue Peter Book Award and the Overall Waterstones Children鈥檚 Book Prize. Now, the main character is Addie. Addie is 11 years old and autistic. And earlier this year the book became a successful C91热爆 drama series starring a mainly neurodivergent cast, which is amazing. I am joined by the author in the studio with me right now, looking very fabulous. I am talking of course about Elle McNicoll. She is here. Hello Elle.

ELLE-听听听听听听听听听听听听听 Hi, thank you so much for having me. I don鈥檛 have my Blue Peter badge on me.

NIKKI-听听听听听听听听听听听听 No way!

ELLE-听听听听听听听听听听听听听 I should have worn it [laughs].

NIKKI-听听听听听听听听听听听听 Now, I watched the C91热爆 version. I mean, I love children鈥檚 TV, but for people that haven鈥檛 seen it what is a Kind of Spark about?

ELLE-听听听听听听听听听听听听听 A Kind of Spark is based on my first book and it鈥檚 about a girl called Addie who鈥檚 from a very small, maybe a little bit smallminded village, and she learns that hundreds of years ago in that village they persecuted a lot of witches, and she wants to campaign for a memorial to remember them because the village wants to brush it under the rug a little bit. So, she thinks I鈥檓 going to campaign for a memorial and everyone is going to think it鈥檚 a great idea, but of course they don鈥檛, but she and her sisters and her best friend Audrey fight to get it made anyway. And Addie, yes, is also autistic and that鈥檚 why she connects and has a lot of empathy for people who were ostracised because they were different.

NIKKI-听听听听听听听听听听听听 Were you always going to write autistic characters?

ELLE-听听听听听听听听听听听听听 No. I鈥檝e been writing my whole life and for most of my young life I didn鈥檛 ever write about it because I thought we weren鈥檛 supposed to talk about disability. I mean, that鈥檚 what the adults in my life told me, they said, don鈥檛 mention it, don鈥檛 tell people about it, so it was this secret. And then finally when I wrote A Kind of Spark I was 26 and that was the first time I鈥檇 ever written about it. so, I think a lot of things came out and that鈥檚 why the book resonates with people [laughs] because it鈥檚 a little bit of an outpouring of things that hadn鈥檛 been talked about.

NIKKI-听听听听听听听听听听听听 I鈥檓 just wondering why you didn鈥檛 want to talk about it?

ELLE-听听听听听听听听听听听听听 I think I鈥檇 grown up being told not to, and if you talk about being autistic or dyspraxic, which I am as well, people would think you鈥檙e after a free ride. All of this is nonsense of course; this is all my internalised ableism, but I thought that it was something that would make me excluded. And actually I was those things anyway. When I started to own the label and I actually started to talk about it in my work and really explore it through Addie and through Keedie and through the story I actually started to accept it way, way more, which is what the character does as well, and realise that it鈥檚 not some shameful thing that I mustn鈥檛 mention; it鈥檚 actually sown into every part of me. And I became suddenly very passionate about all of the lost time and not having books like that when I was young.

EMMA-听听听听听听听听听听 You talked about Addie鈥檚 sister, Keedie in the book, so you gave your autistic character an autistic sister. For me that feels like a nod to the importance of role models. Is it that? Or is it just a gift to Addie so she has someone to show her the ropes?

ELLE-听听听听听听听听听听听听听 It鈥檚 definitely the importance of role models. And having just said the answer previously, I would have loved a Keedie. If I had had a Keedie when I was Addie鈥檚 age I wouldn鈥檛 have thought all the things I thought, and I would have got to the realisation that being autistic is actually this powerful thing, I would have got there sooner. So, Keedie was sort of a gift I suppose as well in a way. But the really emotional thing now is lots of readers get in touch and to me they say, 鈥極h you鈥檙e my Keedie, I don鈥檛 have a Keedie but I have you and I have your book鈥�. Also I really wanted two autistics to talk on the page and on the screen now without there being non-autistic people there. It鈥檚 a sort of autistic Bechdel test.

NIKKI-听听听听听听听听听听听听 What was that test you were just mentioning?

ELLE-听听听听听听听听听听听听听 The Bechdel test, it鈥檚 where two female characters speak on screen. It鈥檚 meant to show if a film is humanising their female characters or not. I wanted to have two. Usually in books there鈥檚 only one autistic person, so I wanted to show that there are actually usually more than one of us in a family.

NIKKI-听听听听听听听听听听听听 And we were talking before we started this interview that your cast is neurodivergent.

ELLE-听听听听听听听听听听听听听 The majority, yeah.

NIKKI-听听听听听听听听听听听听 And they play obviously neurodivergent characters, but also you鈥檝e got somebody who鈥檚 autistic playing someone who鈥檚 not autistic.

ELLE-听听听听听听听听听听听听听 Yes. So, for a good example is Caitlin who plays Nina, which is the third sister of the three. She鈥檚 autistic but she鈥檚 playing a very neurotypical person.

NIKKI-听听听听听听听听听听听听 Which feels like a big moment to me.

ELLE-听听听听听听听听听听听听听 A huge moment, and feels like a full stop in a way because when the book was being sent out to production companies there were lots of production companies that wanted to buy the rights, and I would only give the rights away if they agreed to an autistic cast and to a disabled crew. And a lot of production companies went, hmm, no, we can鈥檛 guarantee that.

NIKKI-听听听听听听听听听听听听 Really?

ELLE-听听听听听听听听听听听听听 Yeah. And they were like we don鈥檛 want that in the early contract, and I was like well I do. The 91热爆 said yes, of course, immediately. I think from some people there was a little bit of we don鈥檛 know if autistic actors can pull this off, it鈥檚 a big role and it鈥檚 a big project. And I firmly believed they could, and they have, and they did. And now we don鈥檛 need to have that conversation anymore because they鈥檝e proven how incredible they were.

NIKKI-听听听听听听听听听听听听 And the TV show is really popular.

ELLE-听听听听听听听听听听听听听 Yeah, kids love it. I鈥檝e been sent the most amazing drawings from the children that are watching it. And just children going, 鈥楽he鈥檚 like me鈥� especially about people like Georgia who鈥檚 so funny and charismatic.

EMMA-听听听听听听听听听听 She plays Keedie, right?

ELLE-听听听听听听听听听听听听听 Yes, she plays Keedie, sorry yes. And so energetic. And I think they鈥檝e never seen an autistic character like that on TV before and they just want to be her.

EMMA-听听听听听听听听听听 It鈥檚 always like Rain Man or a really clever person or someone who struggles to communicate?

ELLE-听听听听听听听听听听听听听 Yeah, it鈥檚 always boy almost, always a boy, and usually always treated as a bit of a burden or a bit of a joke. And these girls are front and centre, they have a lot of agency and they are the heart of the story. And the kids love it.

NIKKI-听听听听听听听听听听听听 You know what I think? I think it鈥檚 time to hear a clip.

[Clip]

KEEDIE-听听听听听听听听 Okay, listen up, you鈥檙e moving school buildings, it鈥檚 a big change. Here鈥檚 what you need to know: the main site corridors get busy, really loud. You have to wait until a bit after the bell and then head out. It鈥檚 usually a bit less, you know. The sixth form bathrooms are the worst. Don鈥檛 go in the break. Whoever designed the upper school definitely wasn鈥檛 thinking about autistic kids.

[End of clip]

NIKKI-听听听听听听听听听听听听 How do you feel when you see 鈥� you鈥檙e hearing it now 鈥� but when you鈥檙e watching it?

ELLE-听听听听听听听听听听听听听 It鈥檚 hugely emotional. It never gets normal. And it鈥檚 so incredible to see these young neurodivergent actors just going from strength to strength and showing what they can do.

NIKKI-听听听听听听听听听听听听 Elle, do you feel proud of yourself?

ELLE-听听听听听听听听听听听听听 Oh yeah, a little bit, a little bit. More proud of them than me [laughs].

EMMA-听听听听听听听听听听 Can I ask a question about schools? Because a lot of A Kind of Spark is based around a school, and you go into schools a lot because you get asked a lot. What kinds of questions do the kids ask you who have read the book?

ELLE-听听听听听听听听听听听听听 They always ask what are the characters doing now. They want to know personal things. They want me to talk about school. They want me to talk about what being autistic is like. Because for a lot of these kids it鈥檚 the first time they鈥檝e seen an autistic adult.

EMMA-听听听听听听听听听听 What do you tell them?

ELLE-听听听听听听听听听听听听听 I just tell them it was very hard when I was a child. I think childhood is one of the hardest times for an autistic person because it really is just walking into a room and everyone else has the script and you don鈥檛 know the lines and you鈥檙e trying to catch up with the scene, and everyone鈥檚 like what are you doing [laughs].

NIKKI-听听听听听听听听听听听听 That鈥檚 a very beautiful way of putting it.

ELLE-听听听听听听听听听听听听听 Thank you. But there was a lot of bullying and a lot of difficulty, and that鈥檚 what鈥檚 explored in the book a little bit. I think the kids like to hear that you can come through it and that you can go on and do well on the other side.

NIKKI-听听听听听听听听听听听听 I know you鈥檝e got three other very successful novels out, but what did you do before you started writing?

ELLE-听听听听听听听听听听听听听 I did lots of different jobs [laughs]. So, I鈥檝e been a bartender, I was a bartender in London; I鈥檝e cleaned toilets; I鈥檝e been an assistant; I was a blogger for a small vintage clothing brand; I was a bookseller, I worked in an office. And working in an office was actually what really provoked me to start exploring and really looking at neurodiversity again because I just wasn鈥檛 doing well and I was taking things very literally and not reading between the lines and not picking up on office politics [laughs].

EMMA-听听听听听听听听听听 Office is tricky.

ELLE-听听听听听听听听听听听听听 It鈥檚 hard. It鈥檚 very tough one.

EMMA-听听听听听听听听听听 What things did you come against do you think specifically?

ELLE-听听听听听听听听听听听听听 Mostly I would take things too literally. So, they would say, 鈥楾he staff drinks aren鈥檛 compulsory, you don鈥檛 have to come and mingle with people鈥�. And I鈥檇 go, 鈥極kay, great, thank you, bye鈥� and I would leave [laughter]. And then a few months in the line manager was like, 鈥榊ou know, that really is where we pick who gets promoted and who gets the opportunities鈥�. I was like, 鈥極h, well if you鈥檇 said that I would have got it鈥�.

NIKKI-听听听听听听听听听听听听 If people would say what they actually mean.

ELLE-听听听听听听听听听听听听听 Yeah.

NIKKI-听听听听听听听听听听听听 Rather than dancing around the houses. So, tell me about this Adrien Prize?

ELLE-听听听听听听听听听听听听听 Well, last year we lost a couple of great book prizes, including the Costa. And there weren鈥檛 that many children鈥檚 prizes left so I thought we need some more children鈥檚 book prizes. And I just said as a joke almost on Twitter, I said I鈥檒l start a prize for books that have disabled main characters that are authentic and interesting and fun. And everyone kind of went a bit mad for it. I went oh, maybe I will do it. So, we鈥檝e done it, and we鈥檝e had the most amazing time. The kids vote for the winner, so we nominate books that feature a disabled protagonist. It can be any kind of disability. The only rule is the character is not allowed to die; it鈥檚 just too common with disabled stories I鈥檓 afraid. And we鈥檝e got the most amazing first winner, A Flash of Fireflies. And the kids voted for it and they loved it. They loved all the books, they said these are great.

EMMA-听听听听听听听听听听 And did you discover amazing authors who write disabled protagonists then?

ELLE-听听听听听听听听听听听听听 I wouldn鈥檛 say discover. I鈥檓 very aware of my colleagues who write about disability because we鈥檙e a small group, so I was in such admiration of them already; authors like Cerrie Burnell, Lisette Auton, all the authors that ended up being shortlisted were disabled authors so I just find that naturally they write the best books about disability [laughs]. And Aisha Bushby who won has OCD. So, it was great, it was so many phenomenal鈥� And what was interesting is that lots of teachers and librarians got in touch and went, 鈥極h I didn鈥檛 know those books were about disability鈥� and I was like, 鈥業t鈥檚 because they鈥檙e not really; they just have disabled protagonists鈥�.

NIKKI-听听听听听听听听听听听听 Characters, yeah.

EMMA-听听听听听听听听听听 It鈥檚 not part of the marketing, it鈥檚 not part of the brand, it鈥檚 just they exist in the story and they lead the story.

NIKKI-听听听听听听听听听听听听 What is next for Elle McNicoll? Is this it now, is this your career, you鈥檙e going to carry on writing?

EMMA-听听听听听听听听听听 I鈥檓 going to try as long as I鈥檓 allowed to. I鈥檝e got a love story coming out next year, an autistic love story, because I鈥檝e found a lot of pushback. In the industry people don鈥檛 believe that autistic girls fall in love and have sex and sort of do grown-up things. It鈥檚 an older book obviously, it鈥檚 not for children [laughs]. But that comes out next September. And then I鈥檝e got the prequel to A Kind of Spark, which is Keedie鈥檚 book coming out in April next year.

NIKKI-听听听听听听听听听听听听 I would urge everyone to go and watch A Kind of Spark. It鈥檚 on 91热爆 iPlayer, that鈥檚 where I watched it. And obviously the book is in all good shops. Thank you so much for joining us.

EMMA-听听听听听听听听听听 Thank you, thank you both.

NIKKI-听听听听听听听听听听听听 Elle was so much fun, wasn鈥檛 she?

EMMA-听听听听听听听听听听 Absolutely joyful. And really fast talker.

NIKKI-听听听听听听听听听听听听 That鈥檚 what they say about me. Well, we hope you loved her as much as we did. So, come back next week for another fantastic podcast, this time with the amazing 鈥� I love this woman as well 鈥� Fats Timbo. Wow.

EMMA-听听听听听听听听听听 Woo. Now, I know we keep beating that drum [beats] but Edinburgh, seriously it鈥檚 one of your last chances to get tickets. We have a handful left for our live special on the 18th August in, I鈥檓 not sure I鈥檝e mentioned it already, but in Edinburgh. So, if you want to grab a last-minute ticket go to the 91热爆 Shows and Tours website.

NIKKI-听听听听听听听听听听听听 And don鈥檛 forget to subscribe, tweet and email us at accessall@bbc.co.uk. Until next week goodbye people. 听

[Trailer for Americast]

JUSTIN-听听听听听听听听听 So, Sarah, we鈥檝e been asked to put together a trailer for Americast. What do you think we should put in?

SARAH-听听听听听听听听听 Well is it too obvious to just say we鈥檒l be covering all the bigger stories that are coming out of America?

MALE-听听听听听听听听听听听听 There鈥檚 a phrase which has been bouncing around since the Trump presidency, which is LOL, Nothing Matters. And the things that would matter don鈥檛 seem to matter anymore.

JUSTIN-听听听听听听听听听 I think that works but it鈥檚, well it鈥檚 not just that, is it? We need to talk as well about the undercover voters investigation, what鈥檚 happening online, what everyone鈥檚 getting in their social media feeds.

FEMALE-听听听听听听听 What they allow us to see is what someone who has a specific set of views or is from a specific demographic or a specific place might be seeing on their feeds.

SARAH-听听听听听听听听听 And of course we鈥檝e also got to mention all the amazing guests and experts that we have on the show helping us understand the stories.

FEMALE-听听听听听听听 This is a great talking point for him in the court of public opinion, but it is not going to go very far in a court of law.

JUSTIN-听听听听听听听听听 And Americast of course isn鈥檛 just about politics and news, is it? Can we get something in about the more cultural, the social stuff too?

FEMALE-听听听听听听听 It kind of is in keeping with the conversations that we鈥檙e having in this country about race and colonialism and the legacy of those things.

SARAH-听听听听听听听听听 Yeah, as long as you include that I think that about covers what we do.

JUSTIN-听听听听听听听听听 And then all I need to say at the end is: Americast is a podcast from 91热爆 News, and you can find it on 91热爆 Sounds.

SARAH-听听听听听听听听听 Yeah, well you have just said that.

听

听

听