βYouβve been ablesplained!β
Get to know the annoying younger brother of mansplaining.
If you have problems with your bones, have you thought about drinking more milk? Rude and often silly questions can be an annoying part of everyday disabled life, but did you know this microaggression actually has a name? Itβs called βablesplainingβ and Nikki Fox and Emma Tracey have a lot to say about the annoying younger brother of mansplaining.
Was your last medical appointment serene and relaxed or did you feel against the clock? A new survey of 1058 NHS frontline workers has revealed they feel the heat too with 71% saying they donβt have enough time to tend to their patients as they would like. Dr Georgie and Dan Scorer, from Mencap, offer up thoughts and solutions.
And Elle McNicoll, the bestselling author behind A Kind Of Spark visits the studio to chat about writing, her amazing neurodiverse cast for the TV series and why office politics were so confusing in her early 20s (just a few short years ago).
Produced by: Beth Rose, Keiligh Baker, Rebecca Grisedale-Sherry, Emma Tracey
Research by: Efe Imoyin-Omene
Recorded and mixed by: Dave OβNeill
Edited by: Jonathan Aspinwall
Email accessall@bbc.co.uk and say "Alexa, ask the ³ΙΘΛΏμΚΦ for Access All" for your smart-speaker to play the latest programme we've made.
Transcript
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04th August 2023
bbc.co.uk/accessall
Access All β episode 64
Presented by Nikki Fox and Emma Tracey
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EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ People have been throwing stuff at popstars on stage.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Yes, they have. Iβve noticed that.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Drinks. Ashes apparently.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Ashes?
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ A phone. And I just wondered if youβre at Edinburgh on the 18th August and someone throws something at you on stage what would you do?
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Well, I mean if it was something like a piece of underwear or some roses, you know Iβm very needyβ¦
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ So, youβd be happy with that?
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ β¦Iβd lap that up, yeah.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ It would need to be an easy to put on bralette, wouldnβt it?
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Well no, you donβt put it on Ems. You donβt wear it. You just keep it and youβre 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, βOi, what are you doing?β
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Well, you see, I wouldnβt see it coming for a start.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ No, you wouldnβt, 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Because I just wonder what kind of things people would throw.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Youβve given this a lot of thought, Ems. I donβt expect weβll have anything lobbed at us. Or we could do β well I couldnβt β but you could do a stage dive.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ I could. And someone told me the other day that when Adam Hills wants to crowd surfβ¦
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ He takes his leg off.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ β¦he takes his leg off!
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ I saw that the other day. But no oneβs getting my scooter.
MUSIC-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Theme music.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Itβs August and we are back for the latest instalment of Access All, the podcast all about disability, mental health and everything else. Iβm Nikki Fox and Iβm in London.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ And Iβm Emma Tracey and Iβm still in Edinburgh, but you will be joining me very soon, Nikki Fox!
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ I know.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Itβs 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 ³ΙΘΛΏμΚΦ Shows and Tours website.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Iβm really excited to see you, Ems, because weβll be [singing] reunited, and it feels so good. But first thereβs 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 weβll be looking at the impact Etsyβs new payment system is having on disabled entrepreneurs.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ 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 youβre doing so if youβre anything like me, and tell a friend to tell a friend to get the ³ΙΘΛΏμΚΦ Sounds app to hear every single episode weβve ever, ever done. Now, on with the show.
ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Nikki, Iβve just been wondering, have you ever tried changing your diet to help with your muscles at all?
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ [Laughs] Em, no, Emma. Iβve taken a couple of vitamins that I think might help; maybe a little bit of co-enzyme Q10 or, I donβt know, selenium or something; apparently itβs very good for muscular dystrophy. So, I have done some reading around this. But no, I donβt for one minute think that thatβs going to improve my physical ability.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ How do you feel about me asking that? Because actually youβve just been ablesplained.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Have I?
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Yes.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Have we got another word I need to get my head around?
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Yes, because it isnβt in a regular dictionary. It is kind of like built on the idea of mansplaining.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Right yes, very patronising.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Where a man tells a woman about a woman related thing as if the man knows better than the woman. And itβs 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 β we love that phrase β who doesnβt have a disability itβs 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Okay. Give me some examples, Em?
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ I came across this term, I actually did a little searchy-search, and it goes back to at least 2013 but Iβve not really heard it before. And you know me, I love learning about disability related things like ableism, internalised ableism, uh, you know.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Weβre not alike in that way are we? [Laughs]
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ No, weβre not; weβre totally different in that way. But anyway, Tanni Grey-Thompson, the Paralympian/legendβ¦
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Yeah, I love her.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ β¦baroness, she put up a poll on Twitter, a vote, and she asked disabled people if theyβd ever been ablesplained at, and 1,300 people responded β which is more than the amount of people that YouGov usually get in their surveys, right.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ More than my Instagram followers.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Because she is a legend.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Yes.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ 45% of them said that they had had ablesplained and only 9% said theyβd 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Did someone actually say that to her?
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Someone actually said that to her.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Wow.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Someone responded to her tweet saying that they donβt 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Oh my goodness!
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ And they said, βOh my goodness, why didnβt I think of that, it would have saved me from the 60 operations that Iβve had to help me walkβ.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Someone said that?
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Yeah. And even in our team our Keighleyβ¦
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Yeah, love Keighley, big up Keighley.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ β¦yeah, Keighley was told by a yoga teacher that she should stop taking her leukaemia medication and treat it with herbs instead.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ [Astonished laugh]
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ So, thatβs basically the crux of ablesplaining.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ I get it, I totally know what ablesplaining is all about now.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ So, have you been ablesplained?
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ I donβt know. I must have been. Iβm sure someoneβs told me something to do with, you know, working out will improve my ability to move better, you know, the usual Iβd imagine.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Iβve just been told that there are cures for being blind and why donβt I check them out.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Iβm sure herbs have their place and supplements have their place, but the disabled personβs probably thought it through.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Okay. Well, at least I know what ablesplaining is now, Emma.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Itβs 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Have you ever bought anything from Etsy? Because Iβve been eyeing up some furniture.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Have you?
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ I actually have, yeah.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ I havenβt because I always think a lot of the stuff on there is very visual because itβs about bespoke clothing and all that kind of stuff, whereas Iβm a very safe clothing wearer, as you know. Anyway.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Itβs 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 itβs 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ I know of loads of disabled people on Etsy, a lot of people on my social media, a lot of people who canβt work in a βregularβ job. Why is it that Etsy works so well for disabled people?
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Some disabled people prefer to be self-employed because they can work flexibly, and some canβt physically sit at a desk all day or fit into the norms of the working environment. Thatβs actually the case for Dan from Buckinghamshire who runs a bespoke wooden furniture business. Esty is currently withholding more than Β£6,000 of his money, and he says itβs exacerbating his mental health condition.
DAN-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ I mean, itβs making my life incredibly stressful which, as I said, doesnβt make me the most pleasant person to be around. I mean, I donβt even like myself at the moment. Itβs 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 donβt sort of get a break to recuperate it just keeps spiralling down essentially.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Another disabled artist got in touch and told the ³ΙΘΛΏμΚΦ that βEtsy has around Β£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. Iβm unable to pay my bills and Iβm desperately unwell and depressed over this entire situationβ. So, what did Etsy say about all of this?
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Well, theyβve now announced they will change this policy after all of the complaints itβs had. And on Thursday Etsy said it was substantially decreasing the amount of money it would put on hold. But it didnβt reveal the new rate or timeframe. One to watch. Weβll keep an eye on that.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ 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 donβt 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, havenβt you? What did you find?
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ 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-ΜύΜύΜύΜύΜύ Hi, how are you doing?
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Thank you for joining us. Iβm doing all right. Iβm really looking forward to chatting to you. Weβre 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Thanks very much. Itβs great to be with you.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ I was saying that I can completely relate to this story because as someone whoβs physically disabled, and Iβve 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 youβre in such an interesting position as both the doctor and a patient. But firstly as a patient, letβs start with that, whatβs your experience?
GEORGIE-ΜύΜύΜύΜύΜύ 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 Iβm also neurodivergent, and things sometimes take a bit more time. And thatβs completely acceptable. But youβre 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 theyβre in the wrong position, and of course youβve only got one nurse and everyone else is busy at the GP surgery. My disabilities are fairly complex, Iβve 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 whatβs going on with me itβs really difficult having to try and go through that all in a ten-minute appointment.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Itβs the timings, isnβt 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-ΜύΜύΜύΜύΜύ What the people we support have been saying is that for them time is such a key issue, itβs such a key reasonable adjustment for people with a learning disability having the time, as weβve already talked about, to actually be able to set out what it is that youβre worrying about, what the issue is that youβve actually gone to get help with. Time is so pressured. Having to ring your GP at 8 oβclock on the dot, and if youβre not on the line in that minute then the chances are you wonβt get an appointment that day. I mean, weβre 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 weβre 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 itβs 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 whatβs concerning them. And that we donβt have things happening like diagnostic overshadowing, where actually really important symptoms are missed because actually theyβre attributed to being about peopleβs impairment, which theyβre 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 thatβs an issue that government has to continue to grapple with.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Iβm wondering of the people you spoke to has it made them feel differently about visiting a doctor, Dan?
DAN-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ 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 thatβs something thatβs 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 whatβs concerning them.
GEORGIE-ΜύΜύΜύΜύΜύ 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ And Dan, I was wondering, because a lot of GP appointments theyβre 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Overall Iβd say itβs trickier. I mean, for some people those other options will be really beneficial and theyβll 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 itβs 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ We did ask the Department of Health about this story and they have pointed out that theyβve 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Well, Iβd say itβs obviously positive, the strategy has finally come out after years of delay. And in terms of whatβs 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 wonβt be with us probably for seven or eight years in many cases, so the challenges weβre talking about today will remain with us for many years.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Georgie, on a more personal level, what do you think people can do to advocate for themselves in these situations?
GEORGIE-ΜύΜύΜύΜύΜύ 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 anyoneβs like me I forget if I go in because Iβve got a million things going on. So, just having that list to refer to is really helpful I think.
DAN-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ 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 youβre on the GP learning disability register. Itβs so important about recording on the register what the reasonable adjustments are that you need, and later this year the flag on peopleβs 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ We contacted the BMA for its thoughts on the survey, and a spokesperson got back to tell us this:
ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ βNHS 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.β
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ We also contacted the Department of Health and Social Care, which mentioned the long-term workforce plan which it said would be: βBacked by over Β£2.4 billion in government funding, this would help relieve pressure on staff and support them to continue providing high-quality care to patients.β
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Access All with Nikki Fox.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Now, our next guest is best-selling childrenβs 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 Childrenβs Book Prize. Now, the main character is Addie. Addie is 11 years old and autistic. And earlier this year the book became a successful C³ΙΘΛΏμΚΦ 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Hi, thank you so much for having me. I donβt have my Blue Peter badge on me.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ No way!
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ I should have worn it [laughs].
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Now, I watched the C³ΙΘΛΏμΚΦ version. I mean, I love childrenβs TV, but for people that havenβt seen it what is a Kind of Spark about?
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ A Kind of Spark is based on my first book and itβs about a girl called Addie whoβs 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 Iβm going to campaign for a memorial and everyone is going to think itβs a great idea, but of course they donβt, but she and her sisters and her best friend Audrey fight to get it made anyway. And Addie, yes, is also autistic and thatβs why she connects and has a lot of empathy for people who were ostracised because they were different.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Were you always going to write autistic characters?
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ No. Iβve been writing my whole life and for most of my young life I didnβt ever write about it because I thought we werenβt supposed to talk about disability. I mean, thatβs what the adults in my life told me, they said, donβt mention it, donβt 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 Iβd ever written about it. so, I think a lot of things came out and thatβs why the book resonates with people [laughs] because itβs a little bit of an outpouring of things that hadnβt been talked about.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Iβm just wondering why you didnβt want to talk about it?
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ I think Iβd grown up being told not to, and if you talk about being autistic or dyspraxic, which I am as well, people would think youβre 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 itβs not some shameful thing that I mustnβt mention; itβs 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ You talked about Addieβs 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Itβs 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 Addieβs age I wouldnβt 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, βOh youβre my Keedie, I donβt have a Keedie but I have you and I have your bookβ. Also I really wanted two autistics to talk on the page and on the screen now without there being non-autistic people there. Itβs a sort of autistic Bechdel test.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ What was that test you were just mentioning?
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ The Bechdel test, itβs where two female characters speak on screen. Itβs meant to show if a film is humanising their female characters or not. I wanted to have two. Usually in books thereβs only one autistic person, so I wanted to show that there are actually usually more than one of us in a family.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ And we were talking before we started this interview that your cast is neurodivergent.
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ The majority, yeah.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ And they play obviously neurodivergent characters, but also youβve got somebody whoβs autistic playing someone whoβs not autistic.
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Yes. So, for a good example is Caitlin who plays Nina, which is the third sister of the three. Sheβs autistic but sheβs playing a very neurotypical person.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Which feels like a big moment to me.
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ 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 canβt guarantee that.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Really?
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Yeah. And they were like we donβt want that in the early contract, and I was like well I do. The ³ΙΘΛΏμΚΦ said yes, of course, immediately. I think from some people there was a little bit of we donβt know if autistic actors can pull this off, itβs a big role and itβs a big project. And I firmly believed they could, and they have, and they did. And now we donβt need to have that conversation anymore because theyβve proven how incredible they were.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ And the TV show is really popular.
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Yeah, kids love it. Iβve been sent the most amazing drawings from the children that are watching it. And just children going, βSheβs like meβ especially about people like Georgia whoβs so funny and charismatic.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ She plays Keedie, right?
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Yes, she plays Keedie, sorry yes. And so energetic. And I think theyβve never seen an autistic character like that on TV before and they just want to be her.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Itβs always like Rain Man or a really clever person or someone who struggles to communicate?
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Yeah, itβs 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ You know what I think? I think itβs time to hear a clip.
[Clip]
KEEDIE-ΜύΜύΜύΜύΜύΜύΜύΜύ Okay, listen up, youβre moving school buildings, itβs a big change. Hereβs 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. Itβs usually a bit less, you know. The sixth form bathrooms are the worst. Donβt go in the break. Whoever designed the upper school definitely wasnβt thinking about autistic kids.
[End of clip]
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ How do you feel when you see β youβre hearing it now β but when youβre watching it?
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Itβs hugely emotional. It never gets normal. And itβs so incredible to see these young neurodivergent actors just going from strength to strength and showing what they can do.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Elle, do you feel proud of yourself?
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Oh yeah, a little bit, a little bit. More proud of them than me [laughs].
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ 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 itβs the first time theyβve seen an autistic adult.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ What do you tell them?
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ 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 donβt know the lines and youβre trying to catch up with the scene, and everyoneβs like what are you doing [laughs].
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Thatβs a very beautiful way of putting it.
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Thank you. But there was a lot of bullying and a lot of difficulty, and thatβs whatβs 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ I know youβve got three other very successful novels out, but what did you do before you started writing?
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ I did lots of different jobs [laughs]. So, Iβve been a bartender, I was a bartender in London; Iβve cleaned toilets; Iβve 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 wasnβt doing well and I was taking things very literally and not reading between the lines and not picking up on office politics [laughs].
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Office is tricky.
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Itβs hard. Itβs very tough one.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ What things did you come against do you think specifically?
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Mostly I would take things too literally. So, they would say, βThe staff drinks arenβt compulsory, you donβt have to come and mingle with peopleβ. And Iβd go, βOkay, great, thank you, byeβ and I would leave [laughter]. And then a few months in the line manager was like, βYou know, that really is where we pick who gets promoted and who gets the opportunitiesβ. I was like, βOh, well if youβd said that I would have got itβ.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ If people would say what they actually mean.
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Yeah.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Rather than dancing around the houses. So, tell me about this Adrien Prize?
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Well, last year we lost a couple of great book prizes, including the Costa. And there werenβt that many childrenβs prizes left so I thought we need some more childrenβs book prizes. And I just said as a joke almost on Twitter, I said Iβll 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, weβve done it, and weβve 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; itβs just too common with disabled stories Iβm afraid. And weβve 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ And did you discover amazing authors who write disabled protagonists then?
ELLE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ I wouldnβt say discover. Iβm very aware of my colleagues who write about disability because weβre 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 phenomenalβ¦ And what was interesting is that lots of teachers and librarians got in touch and went, βOh I didnβt know those books were about disabilityβ and I was like, βItβs because theyβre not really; they just have disabled protagonistsβ.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Characters, yeah.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Itβs not part of the marketing, itβs not part of the brand, itβs just they exist in the story and they lead the story.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ What is next for Elle McNicoll? Is this it now, is this your career, youβre going to carry on writing?
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Iβm going to try as long as Iβm allowed to. Iβve got a love story coming out next year, an autistic love story, because Iβve found a lot of pushback. In the industry people donβt believe that autistic girls fall in love and have sex and sort of do grown-up things. Itβs an older book obviously, itβs not for children [laughs]. But that comes out next September. And then Iβve got the prequel to A Kind of Spark, which is Keedieβs book coming out in April next year.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ I would urge everyone to go and watch A Kind of Spark. Itβs on ³ΙΘΛΏμΚΦ iPlayer, thatβs where I watched it. And obviously the book is in all good shops. Thank you so much for joining us.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Thank you, thank you both.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Elle was so much fun, wasnβt she?
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Absolutely joyful. And really fast talker.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Thatβs 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 β I love this woman as well β Fats Timbo. Wow.
EMMA-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Woo. Now, I know we keep beating that drum [beats] but Edinburgh, seriously itβs one of your last chances to get tickets. We have a handful left for our live special on the 18th August in, Iβm not sure Iβve mentioned it already, but in Edinburgh. So, if you want to grab a last-minute ticket go to the ³ΙΘΛΏμΚΦ Shows and Tours website.
NIKKI-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ And donβt forget to subscribe, tweet and email us at accessall@bbc.co.uk. Until next week goodbye people. Μύ
[Trailer for Americast]
JUSTIN-ΜύΜύΜύΜύΜύΜύΜύΜύΜύ So, Sarah, weβve been asked to put together a trailer for Americast. What do you think we should put in?
SARAH-ΜύΜύΜύΜύΜύΜύΜύΜύΜύ Well is it too obvious to just say weβll be covering all the bigger stories that are coming out of America?
MALE-ΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύΜύ Thereβs a phrase which has been bouncing around since the Trump presidency, which is LOL, Nothing Matters. And the things that would matter donβt seem to matter anymore.
JUSTIN-ΜύΜύΜύΜύΜύΜύΜύΜύΜύ I think that works but itβs, well itβs not just that, is it? We need to talk as well about the undercover voters investigation, whatβs happening online, what everyoneβs getting in their social media feeds.
FEMALE-ΜύΜύΜύΜύΜύΜύΜύ 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύ And of course weβve also got to mention all the amazing guests and experts that we have on the show helping us understand the stories.
FEMALE-ΜύΜύΜύΜύΜύΜύΜύ 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-ΜύΜύΜύΜύΜύΜύΜύΜύΜύ And Americast of course isnβt just about politics and news, is it? Can we get something in about the more cultural, the social stuff too?
FEMALE-ΜύΜύΜύΜύΜύΜύΜύ It kind of is in keeping with the conversations that weβre having in this country about race and colonialism and the legacy of those things.
SARAH-ΜύΜύΜύΜύΜύΜύΜύΜύΜύ Yeah, as long as you include that I think that about covers what we do.
JUSTIN-ΜύΜύΜύΜύΜύΜύΜύΜύΜύ And then all I need to say at the end is: Americast is a podcast from ³ΙΘΛΏμΚΦ News, and you can find it on ³ΙΘΛΏμΚΦ Sounds.
SARAH-ΜύΜύΜύΜύΜύΜύΜύΜύΜύ Yeah, well you have just said that.
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