A full show, we have several current topics and two brilliant guests. Author Victoria Scott has written a book that is, influenced by her relationship with her sister (who is disabled) and the family dynamics when deciding if medical intervention is the right path. Geoff Adams-Spink tells us about Netflix smash, Lupin plus a new Radio 4 show, The Confessional where celebrities admit to behaviour they are not always proud of.
And of course, you have Phil and Simon rattling through topics that have got them thinking. Simon cites disabled lawyer, Gregory Mansfield, whose insightful tweets show disability and ability happily co-exist and blasts those who get stuck at the ‘dis’ part. Phil wonders if Ambassadors actually have power and influence. We also discuss the seemingly more easy question of compulsory vaccinations for people working in care or support roles.
Links to everything are below. We hope you enjoy the show.
FT Vaccine compulsory for some jobs Paywall
Netflix Lupin trailer on YouTube
BBC Radio 4 The Confessional
Patience by Victoria Scott Bookstore
Patience by Victoria Scott Goodreads
A full show, we have several current topics and two brilliant guests. Author Victoria Scott has written a book that is, influenced by her relationship with her sister (who is disabled) and the family dynamics when deciding if medical intervention is the right path. Geoff Adams-Spink tells us about Netflix smash, Lupin plus a new Radio 4 show, The Confessional where celebrities admit to behaviour they are not always proud of.
And of course, you have Phil and Simon rattling through topics that have got them thinking. Simon cites disabled lawyer, Gregory Mansfield, whose insightful tweets show disability and ability happily co-exist and blasts those who get stuck at the ‘dis’ part. Phil wonders if Ambassadors actually have power and influence. We also discuss the seemingly more easy question of compulsory vaccinations for people working in care or support roles.
Links to everything are below. We hope you enjoy the show.
FT Vaccine compulsory for some jobs Paywall
Netflix Lupin trailer on YouTube
BBC Radio 4 The Confessional
Patience by Victoria Scott Bookstore
Patience by Victoria Scott Goodreads
Announcer 0:00
Welcome to The Way We Roll with Simon Minty and Phil Friend.
Simon Minty 0:14
Hello and welcome to The Way We Roll with me Simon Minty
Phil Friend 0:18
and me Phil Friend.
Simon Minty 0:20
We have two or three subjects for your delight I'm going to go flying on in. There is a man on Twitter called Gregory Mansfield. He's disabled lawyer, disability rights, Disability Justice. He tweets a lot. But they're always like pithy phrases, something that makes you think, sometimes deep, sometimes angry, sometimes provocative, and I just like what he's about, we'll put a link to his twitter feed at the end of the show. There's one I spotted recently. And the reason I liked it, well I'll explain afterwards, what he put was, "disability is not the inverse of ability, disability and ability coexist, ableism is a conflation of disability and inability". I like this because I'm tired of people go saying, "oh, but you know, there's dis in disability it's a bit negative isn't it? Or, oh, I feel if you say disability, that means I can't do anything". And I'm like, get over this. And he says it is like saying disabilities is not exactly the opposite of ability. If people get stuck on that dis ability, then they're missing the fact that disabled people are complex with lots of other abilities, and so on and so forth. And that is their ableism because they're getting stuck in it. What do you think, Phil?
Phil Friend 1:48
I'm very impressed with your impression. I don't know who it was that you were imitating when you did that, but it was very impressive. Very impressive.
Simon Minty 1:54
Ok Ya Disabilities.
Phil Friend 1:55
Yeah, that's the that's the voice. Oh, what do I think about this? Um, um, I kind of agree, I suppose. What I think I'd be interested in knowing from some learned scholar, and I suspect Gregory might be the scholar is the Latin derivation. Because I think dis in front of things. Disappointed, doesn't mean that everybody else is happy, does it? Do you know what I mean? Dis is used to. So it's disabled, abled disabled? So I'm kind of in I don't know the answer to my own question. But I'm kind of interested in how the word disability was derived, what its origins were from, perhaps we should look that up, maybe but, but certainly, the idea of ableism, for me has always been about and I know, this is something that's getting talked more and more about, it's being much more used as a word ableism. is often is used about my own thoughts about myself, because if I've existed on the planet as a, as a non disabled person for many, many years, and then I become a disabled person. I'm seeing the world through to use the language, able bodied eyes, and therefore, I'm in some senses, being guilty of ableism towards myself, you know, I keep comparing myself to that kind of thing.
Simon Minty 3:32
That's the internalized depression, or what we're now saying is an expression of ableism. And we will be getting on Professor Campbell, who is a brilliant person around ableism. She's written a lot of this, and I'm inviting her to talk us through the concept of ableism. Your bit about the history of the word disability, which is fine, but I always kind of think, well, you could have looked at before the show you cheeky bugger okay, but the second bit is more important. I think that's the point the word disability moved on. If you're stuck at some, I know Latin or Italian derivative, that's not what we're talking about.
Phil Friend 4:07
I'm not stuck on it
Simon Minty 4:09
It's not relevant.
Phil Friend 4:10
Well, it is relevant because words come from somewhere. And it is relevant now. Whether we're using them differently. Look at the word gay. The word gay was never ever about sexual orientation, never not a million years. It was about being happy and jolly and whatever. And then the gay rights groups, claim the word and now it's common usage all the time. If you look it up in the dictionary, you'll see two definitions. They haven't removed the first one. They've simply said it's now used in this way. So I think disability is a bit the same for me. I'm sort of I'm not suggesting that language is fixed, and it doesn't change and develop Of course it does. But you know what, you and I will used to be physically handicapped, and then I became disabled. So but,
Simon Minty 4:55
but I think maybe with my voice, I might have put you off a little bit, but I don't think that's me. That's not The argument what he's saying is people think by saying the word disability, they equate complete inability. That's the nonsense bit that's the bit on which I love is what he's saying. If you're stuck by thinking disability, and that's why I'm saying, You're you might if you think of the original definition, that's where it got stuck. It isn't what we're saying is you're disabled by certain elements or certain things you can't do. Disability and ability coexist. I'm a disabled person with a million abilities, which is why these Muppets who go well, differently abled, we l like differently abled or handi capable, stop it, I have a disability. That's the impairment that's my condition. I also have a load of skills and abilities. If you're stuck, there, thinking, I can't do anything. That's a real issue that you got, you got to step up.
Phil Friend 5:50
But disability in the context that you're talking about? And Gregory's talking about it, surely doesn't mean? Okay. My disability is I can't walk Actually, my disability is steps and buildings. Let's go back to that. My impairment means I can't walk. Right. So where does disability sit in that conversation then? Because I can play the piano, but I can't walk. So I'm clearly not disabled in all respects. That's rubbish, isn't it?
Simon Minty 6:18
Yeah, exactly. And so people go, oh, I don't want to use the word disability because it is really they will, there is an element that is negativity saying this thing I can't do or because of this thing, I can't do that. But I'm not wiping out all the other brilliant things that I can do. Adequate things I can do. And that's what he's saying. If you're worried about this, he says he saying ableism is where you bang disability and the inability as one and you're stuck back what you think so they're helpless
Phil Friend 6:47
Well, I don't disagree with that. Because it's clearly a stupid position to take up that because I can't walk doesn't mean, I you know, I can speak see talk apparently I can occasionally think and string words together.
Simon Minty 7:01
It is also me suggesting you can say the word disability and acknowledge an element of someone, but you if you then go, Well, that's the whole deal. That's your issue. And if you're suddenly saying, well, that's really negative? Well, it isn't. Because we know there's other skills and abilities, which it's a bizarre thing that people get hung up on the dis bit.
Phil Friend 7:22
Yeah. And in fact, when you talk to say disabled people about disability, are they disabling themselves? Is it the dis bit they're concentrating on or the abled bit if you concentrate on the abled bit, then you find ways of solving your problems. If you concentrate on the dis bit, well you just give up and say there's no point.
Simon Minty 7:44
It's curious because I normally am not I don't get too caught up in language. And I always worry that when we spend so much time on language, we're actually missing the trick of all the bigger issues that are way more important. But sometimes it does feel quite important. And I just liked the way he said it. He just he just nailed it for me. And maybe you got it at the same time.
Phil Friend 8:04
no, and I think the contribution, I agree with you about the general point about language, because we've always said we I'd rather you talk to me and got it wrong than ignore me because you don't know what to say. And this whole "woke" thing that's going on where everybody's frightened open their mouths about anything any more terrifies me, I have to say, but language developing so what Gregorys doing, in a sense is saying this definition may help this discussion, which is why I put it out there for you. And clearly it works very well for you. I need to look at this more carefully, but I do see what he's on about and it makes a lot of sense.
Simon Minty 8:40
We will move on to just in case you have forgotten what he even said Disability is not the inverse of ability, disability and ability coexist. Ableism is the conflation of disability and inability. Well done Gregory Mansfield. He does beautiful tweets. We're gonna move on to whether vaccinations should be mandatory. This was an article I read in the FT it's a little bit older is February, middle of February. And it said British companies are looking to draw inverted commas no job, no job contracts for employees, as the government admitted it was up to business if they wanted workers or customers to hold Coronavirus, vaccine passports. The essence of the question for me, which I'm sure you're aware is, what do you think? Do we make this compulsory particularly in the field of care work and those who may be support workers, for disabled people, for elderly people, people who are clinically extremely vulnerable? That's their words. What do you think Phil?
Phil Friend 9:45
Well, I kind of flippantly in the middle of you describing it said of course all Yes. But I want to retract that and say under certain circumstances. It's very topical actually because this week When we're recording this show, there has been conversations going on by government to say that that healthcare workers and workers in care homes should be vaccinated if they're going to work there. So they've they've raised the bar a bit. I mean, it hasn't come into legislative whatever's. Now where do I sit on that? I think if you're working in an office, selling insurance or whatever, whatever it is, do you really need a jab to protect the public? Probably not? Because most of them have got it. If you're working in a caring role face to face, hands on physical care. And you're looking after people who are incredibly likely to be very ill. If they catch it, then the answer is yes, you should be vaccinated. And I would the much maligned, I would talk about the things like the Health and Safety at Work Act, you have a duty of care, to me, the client, the resident, and I have a duty of care to you, the member of staff. And these two things are often ignored in these kinds of conversations. And I think the legislation exists to say that we have to reduce the risks as far as wherever it's possible to do and one of the ways we do that is by giving you an injection, which stops you passing it on very largely, as far as we understand, and from you catching it, which is my duty to protect you. So all around in those situations, I would say yes to, I think you should be jabbed
Simon Minty 11:33
to the extent of if you refuse to have the jab, and you do not have a legitimate reason, you know, something that prevents you from having it it's gonna cause you damage, then they can't do the work.
Phil Friend 11:47
Yeah, cheerio, or redeployed into a role where they're not putting people at risk. If it's a large, complex organization with other roles. Fair enough. Let's look at if you object to the I mean, the only objections I've heard so far, if I'm really honest, have been from people saying, I'm a bit worried about the side effects, or I'm not sure how good this will be in 10 years time also. Now, I got polio. And in 1955/6 people were vaccinated against polio, polio has now more or less ceased to exist on this planet. Let's just say the same thing about Coronavirus. It's the same kind of logic. And the difference, I guess, I don't know what the difference is. If I think what really is back to language, isn't it and fake news and all this stuff? Many of the people that are objecting to having these injections, these vaccinations are basing that on stuff they've read on Facebook, or or I don't know where, and it's not as far as I'm able to see, based on very much science.
Simon Minty 12:50
And a bit of this and the article does go on and say we need to work out does having a vaccine prevents you from transmitting it? And you know, what's the relevancy of that? And you can have an argument around that. If it's if it's proven that having a vaccine means you still transfer it,
Phil Friend 13:07
then. Yeah, that would make things different.
Simon Minty 13:10
But it's still early days on that. And yeah, and I'm with you, I, here's a question. So I won't get your answer is redeployment. So I have a condition that means I can't have the vaccine isn't goodbye then it's well, we'll try and find you another role that isn't front facing if at all possible.
Phil Friend 13:28
Yeah, that would be the default. I mean, if you're just saying no, not having it. It's a bit like I want to be a police officer. But I don't want to wear that funny uniform. There are certain things about certain jobs, where you have to, you know, you can't work in them unless you do certain things. Now, to be fair, the staff already in residential care settings before all this happened, are already in employment. So what we're doing here is changing their job rules, and I think that would that would open up room for discussion. I get that. But if you're going to work in a care home, my argument would be I want you vaccinated. And if you aren't, I'm sorry, I can't employ you. When you're changing T's and C's, you need the to TUC,
You definitely do!
Simon Minty 14:15
That was fine. My question, you went back to the other one, I'm saying the person who has a condition that prevents them from having the COVID job. And their terms and conditions have changed? What's our solution for that they're not just saying I'm not going to have it.
Phil Friend 14:29
I think it would be either redeployment. Or I might be saying to them, I'm not sure you can work here because you yourself might catch it. And that might make you very ill. And I am responsible as your employer for protecting you. So it may make life really difficult for me to employ you in this particular role for which you are applying.
Simon Minty 14:49
So this is the it's not you It's me you're trying to spin it
Phil Friend 14:56
and and also I probably say something like Health and Safety probably is the senior legislation over equality. So bye bye,
Simon Minty 15:06
you know is is that Britishness I have this is very brutal it's gonna be a black or white but I think it is a black or white on this
Phil Friend 15:13
I do actually.
Simon Minty 15:15
Yeah, it will have to be with someone else.
Announcer 15:18
This is The Way We Roll with Simon Minty and Phil Friend.
Simon Minty 15:21
And we're being so efficient today. I'm going to introduce your topic just because I couldn't find me but then I'm gonna pass straight to you. So the BBC This is a headline BBC.co.uk the BBC announces Cerrie Burnell now has new disability ambassador. She joins the BBCs creative diversity team in one of three new disability focussed roles designed to further strengthen the BBCs commitment to disability representation both on and off air. She's the first BBC's disability ambassador. What do you think Phil?
Phil Friend 15:58
Well I read that now I know Cerrie I've met Cerrie. Thoroughly thoroughly professional one disabled woman knows her stuff, you know, no question about that. I've worked as you have for the BBC on and off for years, and I love them to bits. I think they're brilliant. They get some things wrong, but they get an awful lot, right. And they've always been as long as I can remember. keen to do more around disability and so on. And whilst again, you can be very critical of some of the things they have or haven't done. The intentions are very good I think at the BBC. My issue is with this ambassadorial connection I am getting fed up with ambassadors because there's one for every blooming organization or whatever so we got one for transport we got one for this we've got one for that we've got one for something else ambassadors I think it's a sop I don't think these ambassadors have got any power whatsoever I want Cerrie on the board of the BBC where she can really exercise her ideas and thoughts and so on represent in small "r" you know, the disability issue on the board. I'm not sure that ambassadors, the Minister for disabled people didn't they have lots of ambassadors from different industries? Still do you know the retail and whatever. The most famous one that I know is our old friend Steven Brookes, who looks at the rail travel and stuff like that. He is passionate about rail travel. He loves trains he's a train spotter or whatever else. So he would do it anyway. And I think he makes a big fuss, but I'm interested in what power do these people have to change things?
Simon Minty 17:57
The most famous one is the ambassador's reception with Ferraro Rocher chocolates I believe you've got yourself very muddled there. If Cerrie starts giving out chocolates to all of us disableds she gets my backing! I'm trying to think I am an ambassador of the Business Disability Forum and it doesn't feel the same as when I was an associate Ambassador I feel very external and associate I was part of the internal bit yeah, I once went for a role and they said to me we're not sure yet do you want to be an ambassador? And I said no that's sort of an neither nor for me so let's wait until I can do the proper role that was when that was when that one came out. I should just add and you know that this is gonna change maybe she's the you know what is an ambassador they just sort of front facing someone who can be articulate and talk about this at events but it's not her on her own she is joined by the creative diversity disability lead which quite a long title that's Kay Ashton she's MBE and project manager of Elevate which is Nicola Guard. Now, Nicola, Guard is a dearest favoritist a friend of mine.
Phil Friend 19:16
You're a bit biased now are you showing your true colors now Mr Minty.
Simon Minty 19:20
You know Nick.
Phil Friend 19:22
Nick and I know Elevate which is a fantastic scheme. Brilliant idea. Been going for years.
Simon Minty 19:28
So maybe Kay and Nick, are doing the background, the big stuff. They're going to be doing the strategy they're going to be looking at what they're doing. And Cerrie is their sort of front facing, articulate person who talks about it to everybody?
Phil Friend 19:47
Well, first of all, let me agree with you that Nicola and the Elevate scheme is fantastic. I mean, I really really that is one of the jewels in the crown. I think at the BBC, and I just, I just want, it's not about them. It's not about the BBC, it's about this use of ambassadors, we're going to create a role. The one that you'd think would have the most clout would be the one set up by the Minister for Disabled People where he's got the currently is a he, he's got six or eight or 10 people, all of whom are looking at different aspects of British society from a disability perspective. And they can feed into the Minister dum dum dum the difference its made? I have no evidence it has made any difference. We've got an equality and human rights commission, which has been slashed and burned in terms of budgets and all sorts of things, which does have power to do stuff. But but no will appoint more ambassadors. ambassadors cost very, I don't know if Cerrie's paid. I bet she's not. Which will say something about the status of these people they're to do it on top of their day jobs. Of course,
Simon Minty 21:01
I believe it may be because it's a two day a week, a slightly different one of my ambassadorial roles. I don't get paid, not even chocolates and one I got offered did involve some sort of payment. So we don't know, but I take your point, they genuinely seen as
Phil Friend 21:18
I call it, window dressing. We've appointed ambassador, we clearly are really interested in this subject.
Simon Minty 21:26
Well, it is a three way split. The project, Elevate, there's the creative diversity stuff, and then the ambassadorial. Well, isn't that a lovely? The Holy Trinity?
Phil Friend 21:39
Well, I think what Cerrie brings to this conversation with that with with our two colleagues, Kay and Nicola is clearly her front of screen. You know, she's been on TV, and she's done loads of stuff. Her documentary on disability recently on television was very good. So she gets all of that. And if she's bringing that into the conversation, that's fantastic. But hang on a minute, she's an ambassador, Ambassador supposed to be going, I don't know, you know, the ambassador for Ethiopia or whatever, spends time helping British people understand the Ethiopian issue, don't they? I mean, isn't that what they do? Well,
Simon Minty 22:15
I'm hearing a lot of problems from you not many solutions Phil,
Phil Friend 22:18
Well, you're just hooked on chocolates the whole time.
Simon Minty 22:20
Maybe she doesn't need it. But what we would offer is support. So it's kind of saying how do we how does that role? Have gumption have teeth? Who does she report into? What if it because we don't know that and there could be way much more, and we could be stuck on "Ambassador is a really big role" it's a bit like disability and you get stuck at the dis. Yeah, it could be just a rubbish word. But actually, it could be an amazing position.
Phil Friend 22:49
I think it's very, I have to be, let me rephrase this a bit
Simon Minty 22:53
Say it again Phil
Phil Friend 22:54
Okay. I, this is not me having a pop at BBC, or Cerrie or Nicola or Kate or anybody else in the BBC. It's me having a pop at this idea of ambassadors. Yeah, rather than investing in a rights agenda, or a legal framework, which gives people rights. That's what I'm interested in. And I'm not suggesting for one minute that the BBC won't benefit from this, will develop different ideas about how they portray and talk about disability within the organization, all to the good. But I somehow just feel sometimes that this is an easy fix for something that isn't fixed.
Simon Minty 23:37
As a slight add on, and forgive my slight show offy bit so what's new. I'm going to meet someone who's actor. And we're going to try and meet in August. The point of this is, I'm meeting her in a role as a board member of an organization, and I'm meeting her who is a lead actor within this organization. And I said to her bloody hell do you realize where we're meeting with the title or role of the things that we were campaigning for? So now I sit on the board, we always wanted representation at the top. And I'm part of that which is a big responsibility. Equally, we always wanted actors with disabled disabilities on stage on screen you are that in the leaders, so suddenly we are living what we wanted it to be, it is a long way of me saying is an ambassadorial role, an aspiration, or actually is it really the board role that or the manager of a department we want?
Phil Friend 24:39
For me, it's about where the power is. I want disabled people in the room where the power is, I want disabled people's voices in that room. So you as a board member, in the role you've just described is exactly where I want you. So you are influencing discussions. You are reminding people of the needs of certain groups. You're helping to some degree, perhaps educate them. But you're in a room that's making decisions about how money gets spent, how resources get deployed, what programs might be made, what the shows might be on what kind of seating youre know, you're making decisions. collegially It's a group. An Ambassador is doing what exactly?
Simon Minty 25:20
I do take your point although ironically, that last argument you made, confirm that is a good thing. Because if you're saying we want a voice, she will be the voice. She'll be the voice and the role in the room. As an ambassador, that is exactly what you do. You are that voice representative in the room
Phil Friend 25:36
But she can't vote on budgets
Simon Minty 25:40
Does she then leave the room while decisions are made? Or does she make change? Does the ambassador leave the room? I do take your point, we will reiterate it again. We adore the BBC Elevates great. I there's three or four people mentioned in this article. And I like and respect all of them. So I'm actually a bit secretly excited because I think these are good smart people. What we want is just to make sure that Cerrie's got a bit of oomph or the ambassador role has got a bit of it. Well, I
Phil Friend 26:09
Well for me, just to reiterate my general point, which is I want people on boards, I want people in power.
Announcer 26:17
This is The Way We Roll with Simon Minty and Phil Friend.
Simon Minty 26:20
We're gonna take a little swerve. We're very excited because we have a real life author with us. This is Victoria Scott. Hi there, Victoria.
Victoria Scott 26:27
Hello,
Simon Minty 26:29
Slightly unusual route. I mistook Victoria Scott for a disability rights campaigner called Victoria Scott. But we started talking nevertheless, and joy of joys Victoria has finished and has published a book which is called Patience. It's published by a Head of Zeus, coming out on the fifth of August. VictoriaOf course , you're a journalist, you've been doing this for two decades, alongside a love of telling real life stories. You've also written fiction penning, plays, stories, poems, ever since you started using your parents electric typewriter to give you or to give our listeners a heads up, could you summarize the book if that's not too difficult,
Victoria Scott 27:12
Of course, so Patience was inspired by my sister Claire, who has something called Rett Syndrome. And Patience in the book gets called Patience she is called Patience as well. She has Rett Syndrome too. And she is funny and clever and cutting, and generally, a great person to spend time with. But the thing is, is that she can't actually talk. And in fact, she can't communicate at all, which is the case for some Rett people, and up until very recently, for all Rett people, and I'll may get into that later. And so her parents and her, her grown up sister don't know that she understands them. But in fact, she understands them completely. So you have her perspective. And then you hear from her parents and her sister. And what happens to them all is that Patience is given the opportunity of taking part in an experimental gene therapy trial. And these are real trials, which in fact, are kicking off next year. And, and they are have a massive dilemma because it's experimental, and actually very risky. But with the potential prize of reversing her condition, that that's the possibility. So I threw that into the mix. And I've got this family with two grown up daughters, one of whom has Rett Syndrome, and they've all got other issues going on. And they're all human beings, flawed as we all are. And it's about how they deal with that big, big dilemma and what happens afterwards.
Simon Minty 28:47
Thank you. I know, Phil, you read it from start to finish. Did you have a an opener question? Well,
Phil Friend 28:56
I do. And of course, in some ways, it links to my own personal experience, because I got polio as a three year old. That had a massive impact on my family, not like Patience because I wasn't born with it. So there were three years. So when I was an ordinary toddler, although I think I'm right in saying Tori, that patient's diagnosis isn't clear until she's not doing the sort of developmental stages that
Victoria Scott 29:22
You are correct. Rett Syndrome actually doesn't show at birth. In fact, Claire developed some skills and regressed on which is fairly classic for Rett Syndrome. So she actually had a few words, was able to sort of shuffle around and feed herself a bit, and then gradually those skills are lost.
Simon Minty 29:41
There's a little poignant moment you talk about your parents and this was the innocent stage where we weren't aware of this and then things began to change. Sorry Phil.
Phil Friend 29:50
I was gonna I think what what you've done incredibly well, I think is to point up and talk about and the characters obviously, discuss it a lot. All the way through the book, about the tensions between them, that are caused by the fact that one of their children is severely disabled. And as you mentioned, as the opportunity for some kind of treatment emerges, the dilemmas that the two parents particularly face about whether they're going to go for it or not. And I, I found a my brother and sister, I think suffered hugely, because of the fact that I became this special person with all these needs, and so on. Did Is that what you were talking about me? Now, you obviously you're your own sister was disabled, and you base a lot of your experience on that. So I mean, it's very powerful part of the book.
Victoria Scott 30:45
Yes, thank you, um, and obviously written from I mean, it's not an autobiographical book, but it's not it is written from my own experience. And a lot of the I was going to be my mum for the book, I was really keen that because I was too young at the time when Claire was diagnosed, to really understand what my parents went through. And so I interviewed her almost as you know, as if she wasn't my mom, to ask her all the things that I wanted to know that that I was able to put that point of view across, because parents with disabled children, I think they're often portrayed as just heroes, these amazing individuals who, you know, do this, this amazing act of love. But in fact that as I said, they are just ordinary people who are thrown into this situation, and they deal with it the best they can, but it's really hard. And your siblings and my own experience, I think there's a big range of experience, definitely. And some people find it to have been overwhelmingly positive, and there are definitely positives for me. I, Claire is still alive, she defied medical odds, and she's 41 now, we've just celebrated her 41st birthday. And she and I have developed an unspoken language over the years and a closeness and I had her like that as a child, you know, I used to go and whisper in her ear and tell her my secrets and things. And now I suppose I exactly saying that I don't like a cliche, but but I have learned a lot about the value of, of just the small things, just you know, holding someone's hand or a smile or laughter or that the moment you know, she loves music, so like, you know, just watching her dance or whatever, you know, rocking around in a chair. For me, those are joyful moments. And I appreciate those so much more, I think so there is there is that she really has been a big, amazing thing in my life. But also my parents did have to give her a lot of attention. You know, that's that's kind of normal. And she was needing medical attention a lot. There were horrible times when she was poorly. And we were worried she wasn't going to make it. And that that leaves, scars. And so in the book, hopefully you see all of that you see both both sides, you see the unconditional love and the joy, as well as the heartache and the impact it has on siblings, which I don't think I've ever read about in a novel before. And I wanted to do. So that's why Elisa is there because I think that relationship is important to highlight.
Simon Minty 33:17
And you allude to something and you admit to it in the book, I thinkin the acknowledgements that you are putting the voice on of someone who isn't speaking, we had a guest on recently and she was I mean, she said I was a child with a disability crawling around the floor. I knew what was going on around me. And I knew how people reacted differently and thought of me she's said it made me mature very quickly, because I could hear these different conversations about me and my disability. But at the same time, this person can now speak and how was that trying to navigate because you're trying to stay true to your character but also there's an element of Claire there as well. There's lots of things there how did you find the voice?
Victoria Scott 33:55
It's a huge responsibility right, I felt really worried about it. You know, I really took it super seriously because I am sort of speaking for Claire and I I would never claim that this is a you know, a true voice of someone with Retts syndrome or, or a universal experience or anything like that. It's my fictional and imagined version of what I think it might be like to be my sister, and I've lived beside her I shared a room with her, you know, all these things. She was my bridesmaid at my wedding and and she's a lovely auntie. So I know her really well and I I've observed her smiles and her chuckles and general things and I think I've got a grip of who she is. And so I guess I just put that down on paper and I there's a bit of me as well. And I wanted Patience to be fun because although the book deals with serious subjects, I wanted it to be entertaining and I wanted people to laugh and to really feel for her and enjoy her journey. So that kind of I did feel a huge responsibility and hopefully I did it okay.
Phil Friend 35:01
I think one of the things that's really powerful in the book is the dilemma that many, many disabled people have. So those people working in disability rights, for example, dealing with the issue of cure, have a different agenda from people, perhaps, who became disabled and are always looking to now, what I think you did really well in the book, and I, and I commend you for it, because I think it opens up the discussion between the mother and father who have different views on whether it's proceed with the treatment or not. And I won't say how that pans out, because I think that's an important part of the book. But the tensions between them the rift that it causes, and in particular, the father talking about he likes her as she is, he doesn't want her changed. And I thought that was very well observed by you, but all and clearly because you've you're so close to Claire. But it really is a real issue that I think disabled people very often find themselves having to think about talk about and their families, of course, and so on skillfully done, but was that something that you felt had to be there?
Victoria Scott 36:15
I did think it was vital. Actually, from a fiction point of view, from a plot point of view, you've got to have, it's important to have conflict, because that's, that's what plot kind of drives plot. But equally from my point of view, when I read about the gene therapy, on mice that had been done, they gave some mice Rett Syndrome carried out gene therapy, and the mice were apparently entirely cured. That was about a decade ago, when I read that my heart practically stopped. And I had never, ever considered that Claire could ever be anything other than how she is. And I love her she is we all do. And so there's that in me, there's bits of Pete, her Dad in me, and then there's a huge amount of Louise in me as well, because I want to take away her pain. I don't want her to be, you know, she's gradually deteriorated physically, and she's now tube fed I would like to get back for her at least some of those things, that some muscle tone, some ability to weight bear that would be amazing, but the risks are still fairly significant,
Simon Minty 37:19
Just quickly and without the fear of medicalizing it the risks, that she's not with us anymore, or is it more about you know, even less capability? What are the risks of the treatment,
Victoria Scott 37:29
the risks, um, I'm not a doctor, but or or geneticist, but from the documentation I've read there's a potential for cancerous growths to occur, things can kind of over express, there's a there is a potential of dying. It's rare, but it's there.
Simon Minty 37:49
And I as Phil said, I think this is an immensely difficult area that you've navigated so well. There are purists amongst disabled people who say, you know, the biggest disability barriers and society and things are constructed. But then when you've got a character like Patience who is without speech and out without movement, and the ability that she might have some speech and movement, that's very hard to argue, because that's not societal stopping her. That's the condition that doing it. But at the same time, as you just quite rightly said, and I know I've had this conversation, my sister, you you love the person as they are, that's not the that's not the debate. It's not saying, I don't, you know, I love my sister, and that's how it should be. But I could see an improvement. But then you said these consequences. I'm not asking you a question. I'm just reiterating everything you just said, but well done. You've been navigating it because it's hugely complex.
Phil Friend 38:39
I've got a question, just to kind of change the mood slightly. I loved Patience when she started hating, morning television. This, this whole idea, it talks about powerlessness, and lack of autonomy, and those kinds of issues, which I thought you did really well with, with a lot of humour being forced to watch endless soaps.
Victoria Scott 39:03
I mean like just sticking someone in front of one channel and just leaving it there and that's entertainment, you know, the number the amount that I was just talking to a Rett parent who said, you know, she thinks her daughter must be quite good at meditation, because in the amount of time she's just parked somewhere and then so they go off to you know, sort something out and then come back, there's a lot of space, there's a lot of time, but she's very content. So that's that's where I went with Patience who does have her internal voice that she sort of talks to herself. So when she's, when she's, she's in the first person, that book that's almost heard her talking to herself, also talking to everyone else. And so she has her own little patter going on, which as this as you've you've hinted at can be quite funny and quite rude.
Phil Friend 39:48
About she'll also invents, as you say, a sort of meditative place where she, where she can run and, and and do things. Yeah, which she uses As a device to help her through some of the more difficult experiences she's going through, doesn't she? It's a very rich conversation that's going on in her head. I'd love to think it's happening to all sorts of people that don't have a voice.
Victoria Scott 40:13
Well, I read Olive Sachs Awakening, as research for the book. And in that there are people who have spent a long time essentially looking at walls and not not responding for years. And they're given dopamine in large quantities. And then they sort of come out of their shell. And he actually interviewed a few and said, kind of, what were you thinking of? What were you doing in that time? And this woman said, well, not not really thinking too much. But I just went down inside myself into a, into a tunnel, and then I went deeper into the tunnel, and then I kind of disappeared, I have my own thing. And so I heard I read that and thought, oh, okay, I'll, I'll run with that. So I ran with that. And hopefully, through that, you see some of Patience's his personality as well. And it is how I hope Claire passes her a time.
Simon Minty 41:04
And I also like the fact that that is, it's not a pity party, you are projecting a human being with lots of thoughts and complex. And I really love that part. I mean, coming back to that you're writing this was 10 years in gestation. And then you went on a writing course, I think your husband gave you a nudge. And am I interpreting that lockdown helped a little bit because then you could focus on it, or have I made that up?
Victoria Scott 41:29
Well, no, I did to do some writing during lockdown. But this book was already put to bed by the time lockdown occurred. I'm 42. Now, on my 40th birthday, I just thought, you know what, I'm going to finish that book. And my husband encouraged me, I did the Faber Academy course and the book that have been sitting in a drawer, you know, metaphorically speaking, for about a decade, I finally did, and I did it in about, I finished it in about six months. And my fantastic agent Hannah Weatherall at Northbank took me on, and then she sold my book, she sold a two book deal. So I have another book coming out after this one as well.
Simon Minty 42:05
So I was gonna ask what's next. And we do know that the audio book, Phil and I are fans of audio book that will be coming out shortly afterwards. Now, obviously, that presumably Claire, I don't whether Claire can read but will Claire's first chance to access the book through an audio book, and you're going to be sitting there hiding behind the door or be with her when she reads it?
Victoria Scott 42:27
I think I might hide, I am going to make sure that her care home gets a copy. And yeah, I'll try and get a copy of the audiobook to her so that we can see what she thinks I took the proof copy to show her the last weekend, which is the first time I've seen her in a year and a half, because of COVID and shielding. So it was amazing to see her I had a cry. And it was lovely.
Phil Friend 42:51
I think the relationship she has particularly with one of the care staff, but several others and your your discussion of the care she gets is generally very positive, isn't it? I mean, she's pretty well looked after most of the time Patience is and we don't have time to get into all that now because we know the care systems falling apart and under resourced, and so on. But, but I thought the relationship between her and one of the care staff was particularly a) very important in her story and b) true. You know, in my own experience, I've been in special schools and all that stuff. And there are always people that go the extra mile.
Victoria Scott 43:32
She's had some extraordinary care over the years. Some of the carers that we had come visit us when we were children are still family, friends, regular visitors to our home, because they were such extraordinary people who gave such love and such good took such good care of her and she lives in a residential care bungalow setting now. And the same is true. Obviously, as we know, there's massive staff shortages, not enough cash, all of those things, but the people that I meet there are always great people. And she's she's well looked after and we know that she's loved and we love her and we try and you know normal times she would come home every other weekend to visit my parents who still managed to look after her a bit at home.
Simon Minty 44:13
I was gonna say when COVID first kicked in Phil and I went to a weekly show and we're doing lots of news and updates. And one of the big fears were people talking about residential homes for elderly people but they were forgetting those who had disabilities who were in homes and that there's not a scandal waiting to happen but I'm concerned when we see well some of the dust has settled I'm really glad Claire came out of that i i also a bit like Phil said there was you describe what I call independence for disabled person. Now other people reading like oh, that's not independence, but it is for a disabled person. And there was an accuracy in that which I like because to me the independence is his she's in control. Everything else is by the by and she was in control. So yeah,
Victoria Scott 44:57
I'm really glad you know because when you right this And I don't have a disability. And I was so worried about what people would think who did have disabilities, and maybe I'm, you know, overstepping the mark, but I'm really glad that you felt that way. Because I've observed all these things and being her sister and growing up next to her, I sort of feel like I belong in this. Lovely. Well, honorary? Yes, I've, I've observed it and seen it.
Simon Minty 45:25
We're gonna run out of time. Victoria, want to know, you said in other books in the offing what's what's next?
Victoria Scott 45:29
Yeah. Next one is a book called Grace. It's actually not got any anything about disability in it, but it is about the same thing. It's about love. It's about adoption. It's about who gets to keep a baby when a baby is taken into care, whether it's the mom or the potential foster parents, and the whole issue around that. So it's also hopefully uplifting, and lots about the human spirit and relationships and the power of unconditional love.
Phil Friend 45:58
Well, a good place to end.
Simon Minty 46:01
For those of you who are joining us, it's the book is called Patience. And it's written by Victoria Scott, published by Head of Zeus, and it's coming out on the fifth of August 2021, which will be about the same time as this shows that we've timed it perfectly. Thank you so much for coming on Victoria. Appreciate it.
Victoria Scott 46:19
Thank you. Thank you very much for having me.
Phil Friend 46:21
It's been great meeting you. And good luck with the book. I hope it sells millions. It'd be brilliant.
Victoria Scott 46:28
Thank you guys.
Announcer 46:29
This is The Way We Roll with Simon Minty and Phil Friend.
Phil Friend 46:33
Well once again, we have the delightful pleasure of welcoming a Geoff Adams Spink to our podcast. And as usual, Geoff's going to bring some cultural taste to the proceedings. Geoff, welcome. And what have you got this time for us?
Geoff Adams-Spink 46:50
Well, I've got a listen and a watch for you. The listen is a series that I guess started on good old fashioned linear Radio Four. But of course you can get it as a podcast, you can get it on BBC Sounds. And it's it's one of my favorite actors Stephen Mangan from, you'll probably remember him from Alan Partridge, and then from Green Wing. He's excellent. And I follow him on Twitter. And he's always he's his tweets are very pithy. Anyway, he has created this series whereby he, the conceit is that he is the running the confessional. So you know, people go into a virtual confessional and tell him things that they're not very proud of, or things that are a bit ashamed of things that even give them shame shudders In other words, instead of getting the usual celebrity guff about, oh, tell me about your latest book, or your latest film, or, you know, the latest play that you've opened in the West End. It's people that you know, telling you stuff that you don't often hear,
Simon Minty 47:57
or normally there and all the great things you do for charity, but now when are we hearing that actually, there could be nasty people as well, or they made big mistakes.
Geoff Adams-Spink 48:07
They make big mistakes, or of course, they're not gonna they're not going to fess up to something that's going to get them all over the tabloids. But nonetheless, you get a different aspect of people's characters. I mean, for example, Alastair Campbell revealed himself as being ridiculously competitive to the extent that as a young journalist working for the Daily Mirror, he was playing Trivial Pursuit, it got down to a sort of final deciding question. He read it out, or he read it to himself, realized that the editor of the Mirror would know the answer. So he changed the question completely. To who won Who won the Scottish FA Cup Final in 1974. And then, of course, you know, a couple of weeks later, he admitted it and the guy saw the funny side, but then he did a similar thing with Nick Hornby, the writer and they were doing some kind of trivia, you know, sort of playoff for GQ Magazine, and Alistair and it was done over the phone and Alastair Campbell said he had two kind of boffins under his desk and he had his phone then connected to the Daily Mirror cuttings library. And when he he told Nick Hornby sister this at a dinner party, and Nick Hornby was not amused at all and demanded a rematch.
Simon Minty 49:28
And I like the idea that he created the question about the Scottish FA Cup and then the editor going Hang on this is is science. This is science topic. Where's the football come into it?
Geoff Adams-Spink 49:37
Oh, it was sport and leisure, you see, and the question he didn't read out was how many bottles of champagne are in a magnum? And Campbell knew that the guy would know this straight away. So he said no, no, no, no, no, I'm not doing that. I'm gonna I'm going to give him a something that he can't answer. So you know, again, okay, all right. You haven't got Alistair Campbell fessing up to messing up over Iraq or whatever. You might want to hear from him. But you do get this kind of slightly obsessive, needlessly competitive side to his character, which he's quite happy to fess up to. Another another of the people that enter this confessional is Dr. Phil Hammond who writes under the pseudonym MD for the Private Eye magazine. And he fesses up to a beautiful story about being in an operating theatre as a young doctor, having gone out for a very rich curry and a couple of pints of Guinness the night before the the the consultant was doing an appendectomy by laparoscopy. In other words, you know, this keyhole surgery thing that they they use, and it was the first time anybody had done an appendectomy by keyhole surgery. And so the consultant was very proud of himself called all the junior doctors in to witness this. And there was an inevitable, shall we say, escape of gas? At which point, the consultant said, "Oh, I smell faeces". And the nurse said, Yes, I also smell faeces, or the consultant said, Ah Damn, I think I've perforated the bowel, I'm gonna have to open him up. So Hammond is then left with this horrible dilemma that either owning up to his own as it were escape of gas, or allowing this poor patient to be sliced up for no good reason. But he actually came up with a third way. And the third way was he leaned across to the consultant and said, "I think it was Sister". You know, a bit, I suppose here for a couple of these, but that there is a whole bunch of these interviews. You know, Phil Wang, the comedian, Marianne Keyes, the author Joan Bakewell, who actually very notably fesses up to not challenging all of the rampant sexism and sexual harassment that was going on in the BBC when she was a young journalist.
Simon Minty 51:56
I like the sound that of it sounds a bit like a sort of moral compass show rather than you know, where's your moral compass and when it's sort of gone a little bit askew and there's a bit of I agree, with you Steven Mangan is a lovely guy, he was Postman Pat, and you get the voice, the Postman Pat. Definitely in the film as well.
Phil Friend 52:15
I saw him live in the Norman Conquests at the Old Vic, I think,
Simon Minty 52:19
You're not that old! sorry!
Phil Friend 52:24
He was he was extraordinary. He's a great actor. What's next, then, Geoff, what else?
Geoff Adams-Spink 52:29
Okay, well, next, we've got Season Two of an incredibly popular foreign language series aren't in fact, the most popular foreign language series on Netflix, which is Lupin, which is in French. But there's a there's a there's an English dubbed version if you don't really want to read subtitles. And it was really one of those series that I think crept onto Netflix, and just exploded with popularity, because it's so good. That the whole the conceit of the series is that you've got this wonderful black actor, Omar Sy, who plays a guy who's obsessed with a character from French literature called Arsenne Lupin, who is a sort of a mixture of Sherlock Holmes and Robin Hood, shall we say, you know, he's a sort of gentlemen burglar. And Omar Sy in this series, plays an equally dashing and clever and unflappable guy who is a master of disguise who corrects wrongs that need righting, and who brings down people who need to be brought down a peg or two and he does it with such panache. I mean, it's a it's an emotional roller coaster, you know, the good people are really good and the bad people are really evil. You know, you can always hear people hissing in the wings, if it's a you know, if it was a stage production. So it's a great emotional roller coaster. It's a kind of boy's own adventure, if you like, and it really appeals
Simon Minty 54:05
Yeah, there's a thread underneath. I've watched a couple of them knowing that you were talking about it. This was the first series it has the thread about his family. And as you say, righting wrongs, there is an element of that he's great at magic and illusion and deception. Because sometimes the things that he gets in or out of the scrapes are you're like, Whoa, how that can't happen, but it doesn't matter. They just keep moving on to the next element. He's the same actor who was in the brilliant film Untouchables. You remember the film? And I think he's huge in France. I mean, is this huge, huge actor really well known. I feel the dubbing is a bit weird, but you have to kind of just get over that and then enjoy it for the joy and fun on it is
Phil Friend 54:45
I've just I use subtitles. And like Geoff it was Geoff introduced me to this series and I watched all of the first series and I'm about to start on the second. And I think the other thing, Geoff, that really is impressive. There's one episode where they carry out a heist from the Louvre, and
Geoff Adams-Spink 55:04
Marie Antoinette's diamond necklace in fact
Phil Friend 55:07
You've got it. And there's a sort of random use of Ferraris crashing through walls and stuff. But the scenes set in Paris. I mean, it just brings Paris alive. The one that rivals it for me, I know we're not doing a review of this, but is Call My Agent, which is, again, a French set in France, which I'm, I sure would run Lupin close in terms of popularity, but that's brilliant. So it's on Netflix you say and how long is it each episode?
Simon Minty 55:37
Yeah, we don't want to invest too much time here. You know what Phil's like!
Geoff Adams-Spink 55:39
No, no, exactly.
Simon Minty 55:41
Can you fast forward it?
Geoff Adams-Spink 55:43
Yeah, I can I can I can produce your bullet point summary. Each episodes about 45 minutes long it probably made to fill up an hour TV slot with adverts. And I think season two is I mean, season one, I think he's only five episodes. But I think Season Two from memory is nine or 10 episodes.
Simon Minty 56:03
What I found helpful was when I watched the James Bond film, once it got over this sort of sexism, and dodgy all that stuff. I just don't worry about the credibility. I just enjoy it for what it is
Geoff Adams-Spink 56:13
Just enjoy the adventure.
Simon Minty 56:14
Exactly.
Geoff Adams-Spink 56:15
I think it is that, you know, apparently, Omar Sy, he got this gig because of winning a Caesar award for the Untouchables and all of that thing. And he so he had a lot of creative input and he is a fan of the use early 20th century novels about Arsenne Lupin . And he said, if he had been British, he would have decided to to be James Bond. But as he's Frencf it had to be Lupin.
Simon Minty 56:45
He so charismatic when he is flirting with someone on the screen. I feel that he's flirting with me. You're like, oh, he just oozes charisma.
Geoff Adams-Spink 56:53
He's a brilliant, brilliant actor.
Phil Friend 56:57
Okay, well, Geoff, that's fabulous. There's plenty to think about there and to listen to and to watch. So thank you so much for your time as always, and we'll no doubt See you again. Very soon.
Simon Minty 57:06
We will put, we'll put the links to both Lupin and the Confessional in the show notes.
Phil Friend 57:14
Thanks very much, Geoff.
Geoff Adams-Spink 57:16
Have a good week, guys. Bye bye.
Simon Minty 57:18
We haven't got time for Listeners Corner. We've had a packed bumper show with lots of issues addressed but we have lots of tweets, particularly because we asked you to vote for us in the British podcast awards. And it is not too late to do that. So if you like our show, please do vote for us. You just have to put your email in and that's about it. But thank you for your tweets and your comments loads of you saying how much you love the show. And genuinely, I was surprised how many people commented and said how much they liked it.
Phil Friend 57:49
What can I say I totally agree with that. It's nice to you know, we do these things. It's always good to know that some people are listening. We occasionally touch a spot or a nerve or something which is brilliant. But thank you all very much for listening. And as Simon says, if there's still time to vote for us, that would be great if you could do it, but in the meantime until the next time.
Simon Minty 58:09
Thank you very much for listening. Take care.
Phil Friend 58:11
Bye bye.
Announcer 58:12
This is The Way We Roll presented by Simon Minty and Phil Friend. You can email us at mintyandfriend@gmail.com or just search for Minty and Friend on social media. We're on Facebook, Twitter, and LinkedIn.
Transcribed by https://otter.ai