Disability identity, TV seasons and questions, questions…

Paul Carter is joined by Fran Macilvey, Richard Butchins and Zara Todd for more insightful and intelligent disability discourse.


Disability Now
The Download 31
Presented by Paul Carter

[Jingle: This is the Download from Disability Now.]
PAUL: Hello, I’m Paul Carter welcoming you to another edition of The Download. ‘Trapped’ – we met the disabled author who has chosen that word as the title for a book about her life. Disability in season – is there still a need for TV shows about disability? And questions, questions – does anyone have the right to ask us anything at any time? Our voice, our lives on The Download.
Yes there’s no co-presenter this time but we do have three stunningly entertaining and opinionated guests. Firstly, Fran McKilvie has written a book about her life and experiences as someone living with cerebral palsy. But is it a book about being disabled? We’ll find out a bit later on. Disabled filmmaker Richard Butchins makes a return visit to The Download. He was here last time because he’d also written a book, a novel about a disabled serial killer called ‘Pavement’ – the book that is not the killer! And also returning is activist and campaigner on loads of disability issues including transport, Zara Todd. Welcome everybody. Thanks for joining us. And we’re going to kick off with our usual chestnut that we do at the beginning of every episode – what’s on you minds about disability at the moment and Zara I’m looking at you.
zara Venues is what’s on my mind at the moment. I love doing weird and wonderful things. And it’s great living in London because you get to do weird and wonderful things. But secret venues are becoming more and more common. And part of me goes, “Yay spontaneity” and then I go, “Shit most people don’t know what wheelchair accessible is.”

PAUL: Are you allowed to tell us where these secret venues are?

ZARA: I don’t know they’re secret!

PAUL: What do you mean by secret venues?

ZARA: So lots and lots of arts companies that are doing plays and stuff are now advertising that you won’t get told the venue until like an hour before it’s due to start.

PAUL: Ah okay.

ZARA: And obviously for me because I need to think about wheelchair access they don’t say anything about access when they’re talking about secret venues so I’m like, “Can I go to it?”
paul Have you turned up at any and not been able to get in?

ZARA: No. But I’m trying to discover the secret at the moment so that I can go to a play but if I don’t hear anything I don’t know whether I should just risk it and cause an incident.

RICHARD: Yeah, cause an incident.

PAUL: If you go missing then we’ll know… well we won’t know where you are will we because it’s a secret. Interesting. Fran, how about you, what’s grinding your gears at the moment?

FRAN: I’m very happy at the moment actually. But there was one thing that did strike a chord with me when I read Francesca Martinez’s book. She talks a lot about labelling so that’s really been on my mind a lot.

PAUL: Okay, that’s interesting. And Richard, how about you, what’s on your mind at the moment?

RICHARD: Well funnily enough actually a similar sort of thing to Fran. I was on a panel at the Edinburgh Festival last week – or was it the week before – anyway last week about ‘Disability a Creative Advantage’ which was quite interesting. And being at Edinburgh was quite interesting because there was quite a lot of disabled art, although most of it in the performance area touches on something we’ll talk about later I think. I think and having just gone to my own psychiatrist, and been given a couple of new labels, I think the kind of idea of labelling has been a little bit on my mind recently. I’m just wondering about the whole kind of whether performance by disabled people is perceived by non-disabled people as a kind of politically correct freak show. That’s what’s been bothering me.

PAUL: Almost like a niche, do you think?


PAUL: Yeah, that’s interesting.

RICHARD: A commodity.

PAUL: Well I think they’re all things we’ll touch on later. But before we get on to that let’s start with Fran and her book. It’s called ‘Trapped: My Life with Cerebral Palsy’ and it’s an account of her life from her childhood as a diplomat’s daughter in East Africa, through a confused and disrupted education following the family’s return to the UK; her time at university and then boring and unfulfilling work in the legal profession. Later she finds happiness of a sort on the extreme edge of Britain, and ultimately the book describes how she found happiness and acceptance with her husband and her now teenage daughter. Fran, I think you’re going to read a short excerpt from the book for us.

FRAN: ‘My daughter and I often traipse along the narrow canal pathway on the school run. A welter of bikes, prams, dogs and joggers whisking narrowly past. In the midst of wheels and staring schoolchildren I make light of my body spread-eagled on the concreted towpath. Turn up my head and fix on a smile, a grin that suggests I’m having the most marvellous time down here. I quip, “I’m trying to get a tan” or “I just fancied a rest” so that passers-by feel reassured. When someone comes to help I believe in being as nice as possible which can be a real challenge when I’m sore, dirty, bleeding, embarrassed and worried about my wrists. I have fallen perhaps 20,000 times. I routinely pretend that my upbringing was straightforward, that my school days were filled with games, sports, girlish confidences, lipstick, love and drama. That any time I want a job I can go and get one and that I have a sex life which is fairly normal. By pretending I begin to believe that a normal life is what I have achieved. So part of me feels good, happy, ordinary. The rest is often angry, antisocial and unhappy. Anger surges painfully through my head, energy that flares dangerously or lies like a pile of great ash exhausted.’

PAUL: We’ll start right at the very beginning and that title ‘Trapped’ is there a sense of irony in that?

FRAN: No really I’m very straight. I don’t do irony much. The truth is that I’ve only begun to really understand what it means and it’s about being emotionally trapped. Not physically trapped it’s really about the effect that disability can have on a person by rendering them immobile, unable to move because they’re embarrassed to do.

PAUL: You touched on it very powerfully in one of those passages there but how would you describe your relationship with your impairment?

FRAN: With?

PAUL: Your impairment.

FRAN: I used to hate it. I used to hate it. I used to wish I was someone else. I used to beg and plead God. I’d say, “Look just for five minutes, just give me that feeling for five minutes.” But since I’ve written the book I’ve come to terms with it and actually I’m quite happy now.

PAUL: And what was it about that process; was it just literally the putting the words down on paper that helped you get to that point?

FRAN: I think I felt a great deal of grief which I was never allowed to express. As I was growing up the grief sort of changed character but it never went away and it was layers and layers and layers of grief. So as I was writing the book over a period of three or four years the amount of grief that I shed was astronomical. It was like someone had opened a pustule and I was just bleeding all over the pages but that process helped me come to terms with it really.

PAUL: And how do you think your slightly unorthodox upbringing, if you like, in a different country, what do you think that gave you and does that continue to give you?
fran It gives me a sense of the validity of other ways of life. And empathy with different approaches to life and you don’t take things for granted in the same way. There’s just something about having a wider sphere that makes you recognise that people can be all very different but all bring something valuable.

PAUL: Would you say on the whole you’ve had a happy life?

FRAN: A happy life? Well for 20 years I was suicidally depressed. So I would say that from about the ages of about ten to about the age of about 35 I was not happy. But since then I’ve been catching up and the last five years have been the best of my life.

PAUL: Fantastic. One thing that struck me is you talk a lot in the book about having CP but you don’t talk much about yourself as a disabled person. Was that a conscious decision or is that just something that came about?

FRAN: It wasn’t conscious. I’m acutely aware that it might be a generational thing but I haven’t encountered many disabled people except in very specific contexts. I went to a mainstream school. I went to Aberdeen University and I was the only disabled person in my class, in my year. So the only context in which I met disability was in hospitals. And so I haven’t actually addressed that issue much until fairly recently. The breadth of experience is something that’s new to me and very refreshing.

PAUL:And do you think that having that sense, I mean I know it’s difficult to talk about something that you didn’t have, but do you think that would have made your life slightly different if you had been involved in that sense of disability community?

FRAN: Very much so. Very much so. I notice it when I go swimming now. I’m much more aware of other people who have frailties and impairments. I think you know there’s nothing wrong with me at all I’m just like everyone else I have a frailty so what, we all do. And if I’d been aware of that earlier on I would have been much less self-conscious.

PAUL: And you mentioned you’re in a very good place now. Tell us a little bit about where you are at the moment?

FRAN: I’ve just decided I’m going to be gentle with myself and actually enjoy life. And it’s quite a revelation to me that I can take my time. I don’t have to keep up because no-one is setting my agenda for me. Because in the past you were always trying to keep up with other people’s agendas which didn’t make any allowance for the amount of time it took you to cross the floor, or climb the stairs. So always rushing, always panicking, always trying to get to a place and that was very difficult because you’re just trying to keep up all the time without actually doing anything. You’re not actually trying to achieve anything you’re just trying to keep up. Now because I’m setting my own agenda and I’ve decided I don’t care anymore I can just have fun and be gentle and enjoy life – it’s a revelation to me! I can just have fun wherever I am.

PAUL: I’m intrigued as to what got you to this point; was there one moment, was there a lightbulb moment or was it a progression over a period of time?

FRAN: Honestly? It’s a progression. It’s a very long process but there have been lightbulb moments along the way. The first was when I met my husband. And the second was when I realised my daughter was teaching me things. She was young, she was very young but she was teaching me stuff.

PAUL: Yeah. And do you now see yourself as a disabled person in a different way than you did before?

FRAN: Very much so, yeah. In fact I hardly reference my disability at all if I can help it. But when I do it’s very benign it doesn’t affect me anymore, it doesn’t bother me so much.

PAUL: Richard?

RICHARD: Can I just ask you, Fran, was there an initiating moment or a point at which you suddenly decided I’m going to write a book? What was it that triggered you into that process?
fran That’s very plebeian actually it wasn’t a lightbulb moment at all, it was God basically saying, “Right, your daughter’s at school for six hours a day and you’re bored out of your tiny mind, now it’s time you sat down and did some writing. Stop avoiding the issue.” I’d been avoiding it for years and years and years and eventually he said, “You’ve got all this time don’t waste it, start writing.” And then I had to tell my family who I was because they didn’t have a clue who I was. I’d spent so long not saying anything and just being obliging and accommodating that nobody knew who I was. My family didn’t know who I was, they didn’t understand what motivated me at all, they had no idea what was going on in my head, and frankly neither did I. And then I wanted to give other people who were reading my book the opportunity to feel like they weren’t so unusual after all; that actually it was quite normal to feel anger and grief and to go through a grieving process and to come to terms with it and to feel freaked out, that was quite normal depending on your context. So really I was writing for lots of different reasons.

ZARA: What I find really interesting is this whole idea of grief and feeling like you’re mourning something because you’ve talked about that quite a lot. And I find that really interesting because for me I’ve had a very different experience from you in lots of different ways but we share an impairment. And nobody has ever made me feel like I should be mourning; or at least nobody that I know has ever made me feel like I should be mourning what I don’t have.

PAUL: It does go to show that our upbringings and our backgrounds have a big influence on our lives. Well thanks so much, Fran, really appreciate you talking to us. The book ‘Trapped: My Life with Cerebral Palsy’ is out now. Is it out at the moment? It is out now.

FRAN: Absolutely. Thank you very much.

PAUL: You should check it out it’s a fantastic read and you’re going to stick around for the rest of the show.

[Jingle: This is The Download from Disability Now.]

PAUL: Recently BBC3 ran a season of ten TV programmes under the banner ‘Defying the Label’. Each show was about a different aspect of disability from young people at a specialist college to a look at disability in Ghana, a drama about disabled parents and even a spoof game show involving celebrities supposedly addressing disability in a humorous way. But just what is the value of seasons like this? If disability is going to be shown on TV should it be in ‘special’ shows and seasons? Indeed, should there be specialist disability programming at all? Or should we and our issues simply be integrated into the mainstream of the schedule? Richard, you’re here to talk to us about this. What do you think of the notion of seasons like the one we’ve recently had?

RICHARD: Well I mean seasons are a thing aren’t they in television. I mean I do work in television and they quite frequently will have a season on this or that, particularly in the summer. So I think the seasons are a television thing. They had a mental health season recently, then they’ve had this disability season called ‘Defying the Label’, obviously that’s quite amusing because here’s a season of disability programmes called Defying the Label we’ll stick a label on them. I think in and of itself not necessarily a bad thing to have a season of programmes around a given subject, I’m fairly neutral about that. I have some different issues about some of the programmes and the way that disability is presented or portrayed on television and the lack of people who make the programming. I only know for a fact that one of those programmes was made by a disabled producer/director, I don’t know if any of the others were so I can’t comment on that. But it seems unlikely to me seeing as how there’s only about three or four people I know of and so I’m more concerned with the fact that people making these programmes about disability should have a better understanding of it rather than this kind of weird strange kind of like TV external kind of able-bodied middleclass white perspective on disability which basically means that, “Oh we’ve got to make a programme in six weeks so we’d better find an institution and we can follow some people. We’ll select our characters and we’ll cast it and we’ll mould it into whatever it is that the channel controller wants.” So I think it was very stylised would be a polite way of putting it.

PAUL: Were there any particular of these shows that stood out for you for good or for bad?
richard Yes. Surprisingly. One that stood out for me as a lost opportunity was the one on Ghana, ‘The World’s Worse Place to be Disabled’ presented by Sophie Morgan I think it was. Bless her she was completely ill-equipped to do that programme and I’ve said this in a review. I think it was a tough programme, it needed somebody who was really able to ask the right questions and address those issues, and there was something in that that could have been quite a powerful strong show. But it ended up being all about the lovely white blond girl that went out there and how terrible it was for her. And I felt that was a lost opportunity to investigate something really important, which is the way that disability is dealt with in the developing world.
paul But weren’t they slightly bound by the audience they were presenting for? These programmes were on BBC3 not BBC4 or BBC1.

RICHARD: So young people, the people that watch BBC3 are not capable of understanding complex issues? Well that’s crap isn’t it? Let’s face it. Their age group is 18 to 30, they’re perfectly capable of understanding and grasping and dealing with complex issues. I think that’s just patronising from the TV makers. I’m not doing myself any favours with my TV colleagues here.

ZARA: There are definitely points… I was away for most of August but I recorded the whole of the season out of curiosity. And some of the programmes made me want to throw things at the television. Some of the programmes made me want to scream. Only one of the… While I completely get your point about the Ghana programme the one that really, really annoyed me above all others was the ‘Wanted: A Very Personal Assistant’ one. That to me… I understand the entire reason why it was done in the way it was but I don’t think it sold being a personal assistant; I don’t think it sold being an independent disabled person. All it really was was car crash television.

PAUL: Isn’t there a risk here that we’re doing that typical disabled people thing where we complain for ages that there’s not enough representation on TV, and then there are a series of programmes made about disability and then everyone knocks them down for not being what they want.

RICHARD: Possibly. But that would be like saying there’s not enough black people on TV and then television puts on a 24 part series of the ‘Black & White Minstrels’. It wouldn’t really be representation it would be a form of representation. I think my argument… There were a couple of the programmes that I quite liked too, they weren’t all bad, but let’s stick to the bad ones because they’re really the ones that we’re concerned about. The one on the epilepsy centre that was quite odd because there was a programme about these three people, young adults, who lived in a place where they got 24/7 supervision because they had serious epilepsy except that one of them didn’t. One of them was 21 and her epilepsy was completely controlled by medication and she hadn’t had a fit for four years, so what was she doing there? Now that was a question that I would expect any self-respecting documentary maker to ask. Never. Nobody questioned it. And I think my problem with it was like you were saying, Zara, really is that the questions weren’t being asked and I think it’s all about, you’re right are we complaining about not enough disability on TV, well I think it’s a question of not for us but about us I think. And I think there’s a kind of a freak show mentality, like I mentioned earlier, I think there’s a tendency to sort of commodify disability and go, “Oh this will get us a few viewers” and “let’s choose the wackiest character and the rest of it and do that TV thing” which they do.

PAUL: So what would you have approached differently with this season?

RICHARD: I think I would have approached some of it different. I think if you’re going to deal with a very hard-hitting issue like disability in the developing world and the fact that babies are killed in Ghana when they’re born disabled, I would have approached that in a far more hard hitting way. Some of the programmes you could tell they were made in institutions because that’s where the access was. I would have liked them to have taken longer over each programme, and maybe made a programme about somebody who is disabled who lived independently out there in the world. I know people with severe epilepsy who live independently; I know people with disabilities who live independently. We all, I assume, live independently. So I think it would have been nice to have seen a programme that wasn’t based around either somebody who’s become disabled getting it together to live in the real world or living in an institution.

PAUL: And I think we touched on it a second ago, do you think there’s an issue that, I mean I know that some of these programmes were made by disabled people, but do you think there still is a problem with non-disabled people making programmes about disabled people? Is that the crux of the issue here?

RICHARD: I don’t think it’s the crux of the issue. I mean I think a non-disabled person if they’re good at what they do can make a good film about disabled people, there’s no reason why not. The crux of the issue is more to do with how the people that run television perceive their audiences and the content that they make for them.

PAUL: I think that leads into what was my next question was going to be though: isn’t there a conflict here that the sort of programme that is going to inform non-disabled people about disability is inherently always going to irritate those of us who are disabled? Do you see what I mean by that?

RICHARD: Yeah I do and I don’t necessarily… I mean it might irritate us but it could irritate us for good reasons as well as bad ones. You’ve got to be really careful when you start verging on what I call cripple porn – this kind of brave, inspirational disabled person that wheeled their wheelchair up Everest and fantastic aren’t they and an inspiration to everybody else. It’s like, “Well hang on a minute that makes everything for the rest of us really difficult, thanks” because we’re not all going to climb Everest we just want to be able to walk down the street to the supermarket or whatever it is. And that’s why I think books like Fran’s are so important because I think that highlighting the difficulties living as a disabled person in the ordinary world, whilst it may be a bit boring for TV, is kind of important for us.

ZARA: Not all of the programmes in that series irritated me. And while I would have preferred them to have been done slightly differently one of the things that while I did have issues with it because it was in a specialist setting and the vast majority of disabled people are included in mainstream society now, one of the things that I thought about, ‘The Unbreakables’ I think it was, was actually how ‘normal’ the life was that was being portrayed within that. Admittedly there were things about it that made me cringe at points. But I think while I don’t think normal exists, one of the issues I guess with some of the programming is that it was done for shock tactics and not necessarily in the most appropriate way. So I think that while there are things that I would change not everything about that season annoyed me. It gives some people an opening to have a conversation which they wouldn’t have otherwise. It gives people the beginning of maybe an opening or an insight into realities that can easily be hidden from them. But I agree it wasn’t made the best of. So having more staff behind the scenes that were disabled people and inherently get the issue, not from a voyeuristic point of view, but just from a life point of view would have helped I think.

PAUL: Do you think you can tell the difference when something’s…

ZARA: Yes.

PAUL: …made by non-disabled people?

ZARA: When it comes to disability stuff, definitely. Because the heading towards inspiration porn or freak show, for want of a better word, is much more easy if your whole viewpoint on disability is inspiration form or freak show or this is an amazing that that will make great television, but with no substance other than this is an amazing thing that will make great television, rather than this is reflecting life.

PAUL: Great. And I’m sure it’s a subject that we’ll be coming back to in the future. Now have you ever been asked the question, “Have you always been like that?” I know I have. Being asked insensitive, inappropriate or just plain stupid questions is an unavoidable hazard of life for many of us. And recently some controversy blew up arising from the End the Awkward Campaign run by Scope, the charity which funds Disability Now and the implication, or inference at least, that it’s okay for anyone to ask any sort of question about a person’s impairment or condition or any other aspect of being disabled for that matter. This prompted us to wonder what questions are and are not appropriate; and also what sort of questions our guests have had to face, dodge or just put up with. And I can see Zara chuckling to herself over there so I’m going to go straight over to you for this one.

ZARA: The question I get asked most is, “What’s wrong with you?” And when I say, “Nothing” it’s like ooh what do we do now, we’ve clearly opened a can of worms. The second question that I get asked which is clearly inappropriate is, “How do you have sex?” Now actually I was thinking about this because I knew you were going to ask me, and actually I’m quite happy in a way that it’s not can you have sex, it’s how do you have sex. So maybe there is like a progress that’s occurred. But I still don’t think it’s appropriate to be asked that by a complete stranger.

PAUL: I’ve heard people say that they’re asked this so many times and every time they say it it never fails to astound me. Where do you stand on a more general sense about people asking you questions; do you mind, is it inappropriate; what’s the deal?

ZARA: It depends how they ask the question, who they are. So basically if someone looks like they’re under ten years of age they ask me a question I will answer it as honestly as I think I can in a way that they’ll understand. If somebody is my age and asks me a question my first response will be, “Okay why do you need to know that?” or “why do you want to know that?” And if they can give me a good enough reason then I will give them an answer. But, as I said, the question that I get asked the most is, “What’s wrong with you?” and when I say, “Nothing” people’s reaction to that can vary quite a lot. So some people get really, really angry at me for saying that there’s nothing wrong with me. And some people get really embarrassed by the assumption that they’ve made. And then there are some people that are in between. And depending on how they react will affect whether I choose to answer them or not.

PAUL: I can see Fran nodding vigorously in agreement there. Does this chime with your experience as well?

FRAN: Absolutely. When I’m on buses and an old lady says, “So what happened to you, dear?” I say, “I’m absolutely fine, thank you, how are you?” And there was one time when I did that and the lady was so offended that she actually left my side and went to sit somewhere else on the bus because I wouldn’t give her an answer.

PAUL: Do you find that people want to ask questions as a matter of routine?

FRAN: All the time. The worst one I got was, “Oh I thought everyone with CP was mentally retarded.” And I said to her, “Well actually you can see me here, I’m fine. I’m with you and we’re together having fun this evening, so clearly I’m not.” She said, “But that’s astonishing!” and she was actually offended that she was wrong.

PAUL: I want to ask the same question that I asked Zara really: where do you stand on people wanting to know things; is it ever acceptable?

FRAN: It is acceptable. It depends how old they are. Some of the old dears who want to know me, need to get it out of the way before we can have a normal relationship. They say things like, “Well that’s that dealt with, now we can get on with our friendship.” That’s very much a generational thing, it’s like an old lady. And sometimes if I like her I’ll say, “I’ve got CP.” It depends how old I am as well. When I was younger it was a case of being very grown up and telling them. “I’ve got CP, I was suffocated at birth and this is me.” And now I just think I’m not telling you and I’m going to make a joke out of it rather like you were saying. “There’s nothing wrong with me. I’m fine. I’ve got a slight sniffle today but that’s all.”

PAUL: Richard, do you think this is a shift we’re seeing; do you think people feel like they have a right to know things that maybe they shouldn’t?

RICHARD: They’re bloody nosy then aren’t they? Personally I get two responses: children who are ace because my visible disability is a paralysed left arm which is withered. So they will often come up to me and go, “What’s the matter with your arm?” And I’m perfectly fine with that, they’re kids. But the other one I get… In fact I’ve got some kids who call me Uncle Dodgy Arm, another he just refers to it as “How’s your bendy arm?” And that’s all fine because they’re kids and they’re just curious and they don’t mean anything by it other than it’s strictly an observational thing. And the other one I get is people saying, “You’re not really disabled are you?” which is a really weird one. Because I’m like, “Well I am” just visibly I am. But they actually insist, “No, no you can do everything that everyone else can do, you’re perfectly fine.” And to turn it on its head that’s a really odd one I’ve found quite weird that people do that.

PAUL: People trying to inspirationalise you almost.

RICHARD: I don’t quite know. I do come over quite capable whatever it is and I can use a camera and people go, “I’m amazed you can use a camera, it must be really difficult for you to use a camera.” And I’m like, “Well I can see can’t I?” So is there a change? Well I think the End the Awkward Campaign was a little bit on the salacious side now wasn’t it, I mean it was Channel 4 and Scope spending a shedload of money on asking people embarrassing questions you know like… Quite sure that means that someone could just walk up to you in the street or up to you in the street and go, “Fran, why are you walking funny, what’s the matter with you?” Unless there’s a context and it is all about context.

FRAN: It is.

PAUL: I think the one, I was thinking about this this morning, the one that I always find a bit strange is when people feel the need to tell you that they think that what you’re doing is really great or wonderful. And I think what is your intention there, are you saying that to make yourself feel better? Are you trying to give me some sort of bizarre confidence boost? I’ve never worked it out. I’m going to name drop shamelessly now, but I was stood waiting for a lift yesterday and I was using my phone to book… This voice next to me say, ((French accent)) “You’re very clever. You will have to show me how to use a phone like that.” And I looked and it was Raymond Blanc. I’ve never been patronised by a chef before so that was quite special.

RICHARD: At least he didn’t serve you up on a little bed of broccoli.

PAUL: Well if he’d done it while presenting me with food I probably would have accepted it. Brilliant. Thanks so much everyone that was really entertaining. If you have a view on this or have examples of questions you’ve been asked we’d love to hear about them. Contact details coming up right at the end of the show.

For now all that it remains for me to do is to thank our guests: Fran McKilvie, Richard Butchins and Zara Todd. Technical assistance came from Laura ((Kerker?)) and Ian Macrae produced.

Until the next time from me, Paul Carter, goodbye.

[Jingle: Email editor@disabilitynow.org.uk. And follow us at disabilitynow.]

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