Adam Pearson

Adam Pearson, actor and disability rights hero, on being cast as Merrick in The Elephant Man... and going to the Oscars!  

https://adam-pearson.com/

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Transcript

SPEAKER_00 0:15

This week's Just Between Us is a first. You are my first guest with whom I've never worked before and never even met. It's an enormous pleasure to meet you, Adam Pearson. How are you? I'm all good, thank you. Thank you. So has me I'm excited for this one. I have to say, and not everybody likes it, but I like to start these chats with a with a bit of a C V. And I think we can't really start yours. Well, first of all, I have to say, for people unfamiliar with your name, that you are an actor, a presenter, a disability rights campaigner, and a public speaker, which is of particular interest to me. But we can't really start properly before saying that. At the age of five, you were diagnosed with type one neurofibromatosis, if I could pronounce it wrongly, tell me. Which means in shorthand terms, feel free to correct me that you have non-cancerous tumours growing on the facial tissue. And I discovered Again, correct me if I'm wide of the mark. That so far you've been through something like forty operations. Is that true?

SPEAKER_01 1:42

Yeah, correct. I had 40 middle last year. Yeah. Wow. Yes, you have what they call debulking procedures. Because the condition's A genetic, there is no cure for it. And B progressive, so it's always gonna keep going. You go into what they call debulking procedures, where you remove as much of the excess tissue as you can without being too heroic. Because in my case, it's wrapped around blood vessels, muscle, and bone. You can't get rid of it all, it would kill me, quite literally. So it's all about now having a really good relationship with my team. I've had the same surgical team for for quite a while now. I don't have that many sort of closed-handed rules in in life. But one of them is that if you're going to be cutting my face open on the regular, I should at least like you.

SPEAKER_00 2:44

Do you know that seems totally reasonable to me? So when your mates complain, as I'm sure they have done, about, oh God, I just had to have my wisdom teeth out. What do you make of it? You've been through so much more than most of us.

SPEAKER_01 3:01

That doesn't make what they're going through any less uh for them. And I don't want to create a landscape or create any kind of relationships where we inadvertently turn suffering or purgatory into a a game or a sport. Because if we do it, congratulations, you made a crap sport. And you don't want to diminish what other people uh go through. I I want to be there to support my mates when they're going through stuff, as opposed to being the like slightly toxically braggadocious, well, we'll come on in my shoes then if you teach the bigger.

SPEAKER_00 3:41

Yeah, I get it. I get it. Yeah, yeah, yeah. I said we were going to start with the CB, so we must do. You began as a researcher, Channel 4 and the Beeb. You have since This is probably not chronological. But you've appeared on The Undatables and Beauty and the Beast. You have presented Horizon documentaries, My Amazing Twin, The Ugly Phase of Disability Hate Crime. And interestingly, Eugenics, Science's greatest scandal, which is intriguing. Tell tell us about that.

SPEAKER_01 4:15

So well the the eugenics one. We looked just like the the history of it, like where where it originated from and how it sort of took hold. Because I think with something like eugenics in its really early sort of um Francis Galton days, it was just commonly accepted. And I think it was sort of like a a pseudoscience that then went awry. And the most famous example of it going awry is when it got translated into the German language, where um this idea of a a master race came out in the Germanist Aryan race, and then we we got the rise of the Nazi parties and all the events that led up to one of the greatest human tragedies of modern history, the Holocaust. And then you look at the more modern versions of not necessarily of eugenics, but things that, should they again go too far or fall into the wrong hands, become eugenics. And it's all about asking where the lines are and having having a conversation. And I always think conversation, clear head, soul heart is the way to do these kind of things. I have no interest in turning up to any kind of be it podcast, speaking, engagement, film set, whatever, with a a placard and a megaphone. Yeah. And then you win more friends turning up with a box of donuts and a and like a mirror and a decent notepad to write down what other people are saying. So for example, the in Iceland, the prenatal test for Down syndrome has a strongly encouraged 100% termination rate. And in the UK, it's close to 90%. How far do we push that before we can call it eugenics? And things like um CRISPR and and gene editing, how far do we let that march on before it potentially becomes eugenics? Which is why there is a whole area of science called bioethics, whose job it is, is to help make those decisions. I mean, thank goodness it's not my job. Yeah. I'm an idiot from Croydon, who's got no right making those choices. I absolutely reserve the right to discuss it on BBC four, though making them not really my wheelhouse.

SPEAKER_00 6:56

Do you know what gave me some faith in the whole medical ethics argument landscape was discovering that Alexander McCall Smith, who you might or might not be familiar with, who wrote, among other things, the wonderful number one ladies detective agency. Which is so uplifting. I mean, I'm a softie anyway, but I routinely cry at several points during one of those Botswana-based stories. And so uh the notion that the author is a very highly respected medical ethicist I find wonderful. Yeah. Yeah.

SPEAKER_01 7:41

I'm not a bioethicist who I wouldn't let like dog sit for me. Yeah. They tend to be like really good, switched on, like noble uh people, completely desolate ego, and genuinely there to make that industry just a a better place. Because there is a ton of ego in medicine. Like a lot.

SPEAKER_00 8:05

I want to go down a little bit further down the whole ethical path in a minute, but I'm I'm staring at my piece of paper. And if I don't ask you this now, I I won't, I'll forget to ask you later. So going back to the CB, I can see that you've also done all the celeb shows. So you've done the celeb version of the weakest link.

SPEAKER_01 8:26

I have.

SPEAKER_00 8:27

You've done the celeb version of Master Chef, Mastermind. So this is the real meat of the matter. What was the most satisfying? Which did you end up more proud of yourself? And which left you feeling like a bit of a fool?

SPEAKER_01 8:43

Oh, well, the the bit of a fool is is a relatively straightforward answer, and that was Master Chef.

SPEAKER_00 8:49

Yep.

SPEAKER_01 8:50

I can't cook. I've never been able to cook. Okay, hang on, hang on, hang on.

SPEAKER_00 8:54

Why did you agree to take part in it?

SPEAKER_01 8:56

I spent a career doing like appearances and telling disabled people to push themselves out of their comfort zones and do things that scare them. If something scares you, you've got two options. Don't do it or do it scared and learn something. And this is a good chance to sort of practice what I preach and do something that I'm utterly terrified of that I could potentially learn from. And whilst the bath of public humiliation was set remarkably remarkably well, um luckily uh TV and media is quite transient. So what happens on on a Monday night is normally ancient history by by a Friday night.

SPEAKER_00 9:39

Except we're reminding people of it now.

SPEAKER_01 9:42

Oh yeah, but you know, it it's a my player. I didn't do well. I'll admit I didn't do well. People often ask me what did you cook? The sign I cooked anything at all, there's a massive overheading of what actually happened over that day and a half. No, I was in a heat with Lisa Snowden, who went on to win. So technically, technically, I think that means I came second.

SPEAKER_00 10:06

Yes, it might do in your world. What about Celebrity Mastermind? I won that. Oh, did you? Yeah, I've got the. Well, of course you didn't know that. That that'll sound like a setup. I see.

SPEAKER_01 10:16

No, I've got the trophy at home. It's next to my graduation cycle. That's how big a deal this was to me. Because I'm I'm a um a pub quiz. I'm like insanely competitive when it comes to trivia. And um I like Mastermind because it you're only you're against yourself. Yeah. Essentially. There's no team play, there's no politics. I can claim with legal certainty that I got royally screwed on the weakest length. That I was a victim of a conspiracy between three people who shared a cam to the studio who shall remain nameless. I've got my receipts to to prove it all. Whereas on Mastermind, if you know the most, you win. And it's that straightforward. It's a beautifully simple format that I don't think would get picked up today. If you went to any entertainment commissioner today and went, Yeah, I've got an idea for a quiz show, it's just half an hour or four people sitting in a chair answering questions. They'd be like, Where's the bonus round? Where do the dogs get involved? Yep. And what does the winner get?

SPEAKER_00 11:26

A glass trophy.

SPEAKER_01 11:27

Yeah, with celebrity masterminds written on it. I got a lot of free drinks in my local pub that week.

SPEAKER_00 11:34

Who did you beat?

SPEAKER_01 11:35

I beat the comedian Darren Harriet, whose special subject was Kanye West.

SPEAKER_00 11:40

God. Which I used to think was a service station. But apparently it's a popular music artist, isn't it?

SPEAKER_01 11:46

Indeed, I'm another thing. Um the actress Brona Ward, who's in Derry Girls, and her special subject was Stevie Waterbridge's sleabag.

SPEAKER_00 11:57

Right.

SPEAKER_01 11:58

And then the influencer Riyadh Calakes, whose special subject was James Cameron's Titanic.

SPEAKER_00 12:06

Okay. I promise you we will move on in a minute, but what was your special subject?

SPEAKER_01 12:09

My special subject was World Wrestling Entertainment in the 21st century. I went highbrow.

SPEAKER_00 12:16

And the part it plays in the Trump administration. Or maybe if you go back. Well he is a WWE Hall of Famer, Donald Trump.

SPEAKER_01 12:24

He's got a very good relationship with Vincent Mann, the former owner. I think Vincent Mann's estranged wife is in his cabinet as the small business secretary, if I remember correctly.

SPEAKER_00 12:38

That's only right, surely. I've made a sort of promise to my producers, which is where possible to stop talking about Trump and Brexit. And I tell you, it's quite a hard promise to stick to, but I'm going to do my best. So let's go on and talk about films. Because you made your debut alongside Scarlett Johansson in Under the Skin.

SPEAKER_01 12:59

Yeah, if you're going to make a debut, make it that one. Right. I remember the whole thing really well. I at the time I was at an independent production company called Betty, run by a very still a very good friend of mine, Liz Warner, who I still call my TV mum. And I was casting series two of the Undatables. And then I got an email to my personal email. So it wasn't a work thing at all, from a charity called Changing Faces, who are the UK's largest charity that support people with disigrements, visual differences, etc. Saying that they'd had an email from a casting company about the new Jotham Glazer film. And they wanted a guy with a disigment to play a role, and if you were up for it, sort of get in touch. And as a business graduate, when I saw the name Jotham Glazer, I'd written thousands of words on that man's work in advertising. Okay. And how his advert's a genius. Yet equally, they break every single rule of advertising. Like the old black and white Guinness adverts with the horses and the surfers, they were very expensive. They are way too long. And you don't see the product it's advertising until the last three seconds. And so all three main rules of advertising were broken. And yet they're the most successful Guinness adverts of all time. All because Jolene Dane's brain works in a way that I don't quite understand. But my god, is he a genius?

SPEAKER_00 14:34

And I'm not cutting you off, but I've I've heard you talk about this. And I had to laugh when you told me what happened when you told the interview what happened. On your way to the meeting.

SPEAKER_01 14:46

So at this point, it's all gotten very serious, like very quickly. I was sitting like YouTube videos of myself with people to see how I talk and how I move. And this is sort of like a signal hurdle. And I got to go and meet Jonathan at the um American Church on Tottenham Court Road. And at the time I worked on top of a heels building. So I'm literally, I can see where I'm going through my office window. I had one road to cross, and it was Tottenham Cork Road. And I I get hit by a black cab and break my leg. And like properly break it, knee and knee pointing that way. Which shouldn't be the key for love. Pointing other way. No, no, no, no. It's sunny in retrospect, but at the time it was mildly inconvenient. And straight away adrenaline kicks in, and I'm like, oh no, that's broken. And I call him and like, hey, funny story, I've been hit by a cab. I think my leg's broken. I'm still really keen. Don't think I'm not keen. I'm just gonna be about ten minutes late. And I I call my mum and have the same chat. And she was like, Well, it was gonna happen one day. See you when you see our son. And then paramedics turn up, people from my office turn up. At this point, I'm still under the black cab in my pants, high as giraffe arsenal halting. And I'm and Donald Laser then turns up. And apparently I've had this relay team by colleagues that were there. He said, Bloody hell, Adam, I didn't realise you did your own stunt work. To which I apparently replied, mate, do I look like I've got a fucking stunt level? And yeah, then he came to see me the next day in hospital while I was waiting for surgery. I've got like rods and pins and screws down there now. And offered me the role. So, yeah, when they say break a leg, I'm nothing if not electricalist.

SPEAKER_00 16:37

And then suddenly you find yourself a film actor.

SPEAKER_01 16:40

Yeah, in in Scotland working with Scarlett Johansson.

SPEAKER_00 16:43

And then a fair amount of time later. A different man. Yes, with Sebastian Stan. For which you won an Independent Spirit Award. And the really exciting I don't even know if I'm if I can say this, but I'm going to. You are lined up to play Joseph Merrick. Indeed. In a new film of the Elephant Man.

SPEAKER_01 17:06

Indeed. So it's a film adaptation of the 1979 Berman Pomrance play. So I'm I'm now stepping into the shoes of Mark Hamill, David Bowie, Bradley Cooper, and John Hurt. So no pressure there whatsoever, right? And then of course you've got the whole first disabled actor to do it.

SPEAKER_02 17:31

Yeah.

SPEAKER_01 17:31

Like burden as well. So I really can't screw this one. Well, this one up.

SPEAKER_00 17:38

This this might be a bit of a surprise to you because last night I thought I'd got a copy of The Elephant Man. So I found it on my bookshelf. And by the way, this is I I it happens to be a first edition of the script from 79. Not worth anything, I wouldn't have thought, but I'm going to give it to you because I wouldn't have to be able to do it. And I was looking through the intro last night. It said something that I stopped in my tracks. So this is Bernard Promerance, the writer saying the following when I can find it. This is talking about Merrick. Any attempt to reproduce his appearance and his speech naturalistically, if it were possible, would seem to me not only counterproductive, but the more remarkably successful, the more distracting from the play for how he appeared. Let slide projections suffice. What do you make of that?

SPEAKER_01 18:38

I completely agree. I mean one of the reasons uh rumoured that the um the David Lynch film is in black and white is because the prosthetics just weren't good enough to support colour film. I think black and white is just the correct choice creatively anyway. I can't imagine watching the Lynx film in colour. But it's also the reason that no one's done prosthetics on the Broadway play. I think Bradley was dead set against using prosthetics when he did it way back in what, the the 2010s. I think he embodied it. And yeah, I think too often when you use prosthetics, you can push it too far and it can be really, as was written there, crass, distracting, and um disingenuous.

SPEAKER_00 19:34

How big a deal is it for you to get this part?

SPEAKER_01 19:37

For me, this is a really full circle moment of um catharcism. Because growing up in the hyper Darwinian environment that is the secondary school playground. I'd only ever heard the term elephant man thrown at me as like a term of derision.

SPEAKER_02 19:55

Yeah.

SPEAKER_01 19:56

And you'd know when it was coming, you could prepare for it. Because you used to get the TV guides with the Saturday paper when analog TV was like alive and well, and TV was appointment viewing. You sort of had to go through it all with a highlighter and um plan your week. I used to base my Saturdays around what was on at the time LWT. Because we used to have, I think it was Gladiators, Blind Date, and I think Wheel of Thought Chin was on just as well Gladiators with my coach friend, Nikki Campbell. And then they'd always channel four would often show the elephant man once or twice a year on Thursday. So when I saw that in something like the TV guide, I'd automatically know how my Friday was gonna go. Wow. Who was gonna say and where, because you know what your route around the school is that day. And so I guess I went into this period of just avoidance. The old kind of flight freeze. I very much chose flight. And then years, years down the line, I get commissioned by BBC Three to make a documentary about the history of George and Freak shows in England and America. And that that came off the back after Under the Skin came out in um America. I got a um a face message from a man called Todd Ray, who I'm now friendly with, who at the time ran the Dennis Beach Freak Show in California. Right. Saying, hi, I run and operate the Dennis Beach Freak Show in California. If you're ever in California, let me know, I'd love to work with you. I sent the most British reply I've ever sent anyone, being like, Hi Todd, thanks for reaching out. Glad you like the film. I'm not sure what I could offer your establishment as I have no real skills. Here's my mother's phone number. She will verify I have no actual skills that could benefit you in any way, shape, or form. But please do keep in touch. And then I should. This message, we were in in a pub one night after work on a Friday. There's a really good pub called The Hope, which is down Top the Street. And I'm I showed it to our head of development at the time, a man called Dan Glue. Shout out to Dan if you're listening. Loggy miss you. And he he read it, laughed, and then looked at me and said with all sincerity, would you do it? And like, what do you mean? Because if he's gonna pay you 10 grand, who's the idiot? And I'm like, that's a really interesting way of looking. Looking at this. Like if someone's gonna pay me X amount of money just to go to LA and stand outside a circus and being like, roll up, roll up, bring it on, give us your money. Motherfuckers, yeah. Who's really being exploited there? And so at that point, when you're doing that documentary, Merrick becomes unavoidable. Yeah. Right? So I had to sit down and I watch the film start to finish in its entirety. When I was, I think I've been 26, 25, 26, so a good 30 years after the film had come out. And by that point, I'm a lot more grown up. I grew up this emotional intelligence and the ability to separate the past and the present and fictions and reality. And also years of therapy means I put in secondary school well into the rearview mirror and dealt with it. And even now I don't hold any like bad feelings towards those years or those people. I think it's unfair, unreasonable, and reckless to judge anyone on who they were when they were 14, 15, 16. Because it's a test that I certainly wouldn't pass to expect others to pass it.

SPEAKER_00 23:46

Except I heard you talking about social media, which maybe in a way is a sort of modern day equivalent of Fridays, when unbelievably to most of us, you find yourself getting it on social media.

SPEAKER_01 24:02

Yeah, I think there's a difference there. I think in a weird way, the old what I quite call old school bullying, at least you had to pluck up the statistical fortitude to go and find the person, say it to their face, and then you'd watch their soul die behind their eyes. And you'd feel this good old-fashioned emotion that we call remorse. Whereas now anyone can set up a fake account with a fake name and a fake avatar, click it, send it, and feel all powerful. And it's that level of anonymity that I have the problem with. And then when you do reply and engage and then get told, oh my god, what are you doing? Why are you being so like, I don't know, transphobic or why are you looking at a teenager? It's like, how am I meant to know any of that when you're hiding behind a fake name and a fake profile? I'm just responding to what you said rather than who you are. And if you can't handle the consequences of your actions, maybe don't act in a way that's so abhorrent and gross.

SPEAKER_00 25:17

It sounds like we might be on the same side of the argument about anonymity and um on social media. But let's not go there now. I want to talk for a little bit about the speaking side of your career. Yeah. It's obvious what motivates you. The money, right? Aaron Ross Powell Yeah. I mean you might be talking at a medical conference or something like that. But also forgive me, but to me this is more interesting. You might be talking to any old corporate crowd who have no specific professional interest in your experience. Almost certainly won't have met somebody who, to put it bluntly, who looks like you. Yeah. Almost certainly won't have heard you talking. Two questions, really. One, what goes on in your mind as you're walking out to the mic? And two, is what do you think goes on in their minds?

SPEAKER_01 26:18

Okay, so in my mind, I'm there to do a job. There's an element of rock up, plant your seed, and give it to them. And I do that with everything anyway. I've always said that people are gonna stare at me no matter what it is I'm doing. Let's make it worth everyone's time and ticket price. In their heads, as you just correctly said, I'm often people's first interaction. I certainly closest, proximity interaction with someone with a facial disfigurement. So then by just thought, you become the de facto standard bearer. This is what they will now use to go out. And when they see someone else who has a disfigurement, they'll be like, oh yeah, I've dealt with this before. Because Adam Pearson came and gave this talk here, there, or or wherever. So you've got to make it good, right? But also I think what often gets forgotten with public speaking is you've got to meet the audience where they are, not where you wish they were. And that people don't know what they don't know. And that's okay. I think when people go ignorance is an excuse, I think that sets everyone up for a massive fall. Because I think ignorance is an excuse the first time. Yeah. And then once you know better, you can do better, that then becomes the gig. And you also need to leave people with almost like a challenge or feeling something. If anyone rocks up, does like an hour's talk and then goes and nothing happens. That's been a giant waste of everyone's hour. Right? You need to leave them with an impetus uh change and be sort of like that middle point of like a wider ripple effect, you know, in like uh cultures, like ice, whatever vernacular one wants to use. And that's why I really like public speaking, because you'll never fully see the change that you've made. But I think as long as you've made one, you've done good.

SPEAKER_00 28:29

I think there's a there's a potential, let's put it like that, misunderstanding about public speaking and the effect it can have. And if to put it crudely, you're a pedestrian speaker delivering a lot of off-the-shelf cliches and aphorisms and bits stolen out of self-help books, then they're not going to take a great deal away with them. Because apart from anything else, all you've given them is a bit of a performance. And you know, if they're into it, they'll already know it, you won't have changed anything. Trevor Burrus, Jr. If however you bear your soul and open theirs and open their eyes to uh something that's outside their experience. I think the effect can be lifelong. I'm going to drop a name now, which I'm I'm sort of known for, but forgive me nonetheless. I brought over an actor called Christopher Reeve at the turn of the century. And I remember that because part of the deal was for him to go to what was then called the Dome, watch their show, and talk to the press about it. And the producer who might well be listening to this. The producer had to hire a basically a hospital aeroplane. Yeah. It was a big deal. He had to have a hydraulic lift made to get his wheelchair up onto the stage. Yeah. It's a very big deal. And it you know, to be brutal about it, it costs quite a lot of money. Trevor Burrus, Jr. Yeah.

SPEAKER_01 30:09

Even nowadays, um I got it this are I think six thousand.

SPEAKER_00 30:13

Right. I have no idea how much it costs. But you know, he's a Hollywood A-Lister, or he was. So the whole thing costs a great deal. But a big audience. And I remember talking to somebody shortly afterwards about how much the whole thing had cost. And it was, oh my God. But if you then divided that up by the number of people in the audience, and then ask yourself it's an unanswerable question, a rhetorical question. But how many of those people will remember that experience? Exactly. And it becomes what people might now call a a no-brainer. Last night I was remembering this, because it's been, you know, 25 years now. And I was remembering what I heard him say. And then in case I got it wrong, I had a reference point because I made notes at the time, and I found the note. And the bit that got me and this chimes absolutely with what you're talking about. He said Thankfully I don't do accents. He said in some ways, the bad days are better than the good days because they get you thinking about what you should be doing. And they may not remember it verbatim, but fifteen hundred or so people will now remember that extraordinary lack of self-pity. Yeah. That extraordinary arguably unfortunate phrase in his case, but get up and go. And that refusal to be mentally beaten. Trevor Burrus, Jr.

SPEAKER_01 31:50

Well, that's what good public speakers do. They create moments and they tell stories. And that goes back to what you said earlier. We can talk about the cost of doing something, or we can talk about the value of doing it.

SPEAKER_02 32:03

Yep.

SPEAKER_01 32:04

And the two very different kind of one you can write down on a spreadsheet and the other one you just have to let be and just exist in the room. And let people feel the weight of it. I was talking to my on my team really recently. I did an event in New York last June. I got an award, and when you get away, you've got to go give a give a speech. And I try hard not to overthink those kind of speeches. Absolutely do your prep work, know your audience and and know your timings. But you can over-rehearse things to the point where it becomes insincere and off the shelf. And I only found that recently that people still within that organization can quote me word for word. And when you hear that, you're like, oh well, maybe, maybe, maybe I'm not an idiot. Maybe I'm not an idiot from Croydon.

SPEAKER_00 32:59

Isn't that a fantastic feeling?

SPEAKER_01 33:00

Yeah. Yeah, yeah, yeah. It's when you start seeing it on coffee cups that you're like, okay, we've all done two, two now. I think the quote was know your value, know your worth, know how you want to be treated, and let that be the bar. And if people can't clear the bar, don't move the bar, move the people.

SPEAKER_00 33:20

Don't think I can say anything in answer to that. I said earlier on that we should come back to the whole sort of ethical conversation. One way into that is this line that I saw written about you and what you advocate, advocate for. It isn't about ethics, but it sort of borders onto it. And that is that you argue for a world where everyone, regardless of appearance or ability, feels seen and valued. Does anyone ever stand up and say bollocks? Sorry, that's a very crude word. How can you disagree with that?

SPEAKER_01 34:05

Well, no, no one's gonna ever stand up and say bollocks. Because that would be, you know, an instant red flag. If you look at the way people handle certain things, they might as well be saying bollocks. Like, but that team of Spanish doctors that have found that have been able to regress pancreatic cancer in mouse models, the minute that news story broke, the lead oncologist has a quite pronounced vascular birthmark. Soon as his photo goes in medical journals, what do you think the conversation is? All about the birthmark.

SPEAKER_02 34:42

Yeah.

SPEAKER_01 34:43

Instantly, all of his work, and this is one of the biggest kind of oncological breakthroughs in decades, all of that takes a vaccine because he's got a a birthmark. And I'm like, what the hell? What does anyone have to do where this doesn't become like the main thing? He's on the leg of curing cancer, he can't do it. What chance do the rest of us have?

SPEAKER_00 35:08

So it's not that Joe Publick sets out necessarily to argue with your point. It's just that maybe they don't.

SPEAKER_01 35:22

I don't think they get it.

SPEAKER_00 35:23

Yeah, I think that's what I was struggling to say.

SPEAKER_01 35:25

I think disability is unique in terms of other protective characteristics in that you don't get it till you get it. And you will get it. I was having this chat with um Richard Herring earlier in the week, that there are two kinds of people in this world, disabled people and the not yet disabled people. So yeah, uh this is something super morbid, it it's a common. Like that clock is ticking. And even even temporarily, if you're listening to this, and God forbid, you are in an accident somehow or fall over at home and break your leg, break your ankle, and even temporarily have to use crutches or or a wheelchair. How does getting to your office look? How does getting around your house look? How does going to your local Powerball football game look? And if the answer to any of those questions is, oh, I don't know, maybe think about it a bit more.

SPEAKER_00 36:26

You see, that's for me, that's where ethics come back in. I don't mean academic uh ethics as an academic discipline. I think I mean individuals ethics, for want of a much better word. Just a slight aside, there's a constant debate, which is rather too generous a word to give to it, these days about usually framed in the context of benefits.

SPEAKER_01 36:53

Yeah.

SPEAKER_00 36:54

And many, many, many, many people saying that benefits are overly generous or they go to the wrong people, or whatever. But this genuinely interests me as a disability rights campaigner. Do you see uh any argument when some people might say, well, you know, uh I had it tough when I was growing up, and I got very depressed, and blah, blah, blah, blah, blah. And it's just, quote, life's up and downs. Trevor Burrus, Jr.: So the question I don't necessarily need to ask you about that, but the question in my mind is is it right to group all these disabilities together into one? Or put it another way, as a disability rights campaigner, would you campaign for disability rights for everybody who is to a larger or smaller degree disabled?

SPEAKER_01 37:50

Okay, absolutely. So that's all we're looking at, if we're defining disability according to the law, it is a physical or mental long-term, i.e., one year plus, physical or mental impairment that affects one's ability to carry out day-to-day tasks. Zero problems with that definition. When it comes to grouping people, I think that's incredibly dangerous. Because it attempts to create a monolith where there isn't one. And if you've met a disabled person, you've met a disabled person, they'll have a, we don't all have the same disabilities. Even those with the same conditions will experience them differently because they often exist on a spectrum. And they'll have different ways of navigating the various challenges that come up with those disabilities, be they the medical ones, and not, you know, disability and medicine are always gonna exist in partnership. We also have like a more social model, uh disability now, where people are also disabled or disadvantaged by the environment where, i.e., society isn't necessarily geared up for them or built with them in mind. Like a lot of the underground isn't wheelchair accessible, a lot of the national rail network isn't wheelchair accessible. And if you make the world accessible for disabled people, by the thought you make it accessible for for everyone.

SPEAKER_02 39:29

Yeah.

SPEAKER_01 39:30

Like drop calves designed to wheelchair users. Now we we all use them. Audiobooks designed to buy the party side with people. Now we all use them.

SPEAKER_00 39:43

I get that completely, and I absolutely sign up to that agenda. Part of me, maybe it's just the provocative part of me. Maybe it's the part of me that is um that is looking for disagreement rather than agreement. Is you might not like me putting you into these shoes, but I'm going to. So you have had to go through an extraordinary amount of psychological work. Yeah. There might be somebody who for whatever reason becomes very nervous, for instance, about leaving their home. Yeah. Or getting a bus or doing any of those things that they need to do in order to carry out an inverticoma's normal life. Trevor Burrus, Jr.

SPEAKER_02 40:28

Yes.

SPEAKER_00 40:29

Now I know you will say it's not a question of competition. You don't want to, and you don't see yourself as having had to go through more. But you have. So does the person who is suffering, but not in not in anywhere near as bad a way, and possibly in a way that might be helped by other means rather than on the surface of it anyway, almost encouraging that person not to try to get up and get a job. I know that's a Tory argument. Yeah, no, no, no. And and I I think I'm where do you sit on all this? I'm ham-fistedly trying to say.

SPEAKER_01 41:11

Well, I I think in order to change, people would want to change.

SPEAKER_00 41:16

Right?

SPEAKER_01 41:16

It's the old you can lead a horse to water, but you you can't make it drink. And even I'm resistant to certain kinds of positive change. Like, you know, I put off quitting smoking for like two years longer than than I should have done. I've had like thousands of one last drinks. Talk is cheap, but it takes a lot of real like impetus to make that choice to change. And I think a lot of people just struggle getting over that first hurdle and saying, I'm gonna do this. And then when you decide you do want to make that change, very often the pathways into it are also really tricky to navigate. Like the waiting list uh AHD assessments is years. So unless you could afford to go private, what do you do there? Yes. And if someone's who's played the therapy game and and been on the lists and and knows both the arduous journey to get there, but including the benefits of doing so. Often it can be hard to see the light at the end of the tunnel amidst all that like noise and confusion and utter frustration.

SPEAKER_00 42:42

I understand. And thank you. Because I suppose what I've been trying to do is to navigate, albeit on a superficial way, to navigate quite a different, difficult, ethical argument, which is too often simplified and generalized and targeted and misused, and doesn't actually take the debate much further off.

SPEAKER_01 43:04

It doesn't, yeah, very often when you hear this, it's sort of, oh yeah, they're all just all people are lazy scroungers who should get jobs. That's great. Or if we look at the actual DWP stat, disability benefit fraud makes up 0.3% of all fraud. The other one that you hear a lot is, oh, why'd you get a free car if you've got anxiety? It's like you don't. In order to qualify for mobility, you need to be receiving the higher level of pip for um transport, which is incredibly hard to uh to get. And it's uh I think it's just a lot of people on certain news channels shouting catchphrases into the Easter. And both signs of the design do it. By the way, it's not exclusively. Exclusively the right shouting oh woke like scrounger, so on and so forth. And the other side is equally guilty of shouting um kind of racist, transphobic, homophobic. And I, as I alluded to earlier, really miss that middle ground where we can all go into a conversation with a clear headless heart. Also going in knowing that the person you're talking to probably knows something you don't.

SPEAKER_00 44:30

You're very much a a man after my own heart, Adam. You can tell I've found it difficult to ask questions about disability rights and stuff because I don't want to say the wrong thing. On the other hand, I'm bored with this argument bouncing from one to another.

SPEAKER_01 44:46

And I I'm bored of the noble silence. But in a way, I I I feel for those sentiments because I think a lot of different eggs cells have been put down. And everyone's scared of saying the wrong thing in case they get in trouble or get cancelled. But unless people are given the freedom to say the wrong thing, how will they ever learn what the right thing is? So let's all have a chat. If you get it wrong, I'll lovingly and patiently correct you. No one's getting cancelled. And then we can all move forward together. But yeah, let's all push through that discomfort. Let's all also, there's a real toxic side. This is gonna get me in so much trouble. But I'm gonna say it. There's a toxic side to the disability activism community that are just itching first sight and we're nitpicking over things that really don't matter. And I think there's a very small, small percentage of the community that need to get over themselves and learn to have a grown-up conversation rather than shouting at everyone that they're getting it wrong. Wow.

SPEAKER_00 45:54

I don't know anything, I think I don't know anything about at all from first hand about those discussions. But I'm immediately going wow, that's so obviously right. Thank you, Adam. Do you know what? I knew this was going to be an education. By the way, I I was gonna say, what project are you gonna do after Elephant Manor? Now I just think I know it's discredited, I know they're way lower in the scale of valued occupations even than estate agents, but if you decided to go into politics, I think it would be a good thing.

SPEAKER_01 46:27

I jokingly suggested I would run for Mayor Croydon, and I got very quickly talked out of it by all of my friends because I just thought you'd win. And then you'd have to do a real job for the first time in 20 years. And I'm like, yeah, forget that for a game for a game of soldiers.

SPEAKER_00 46:44

I think I think your mates are right. I do know, because I've been tipped off, that you're shortly off to the Oscars. Yes, I am.

SPEAKER_01 46:51

Which is gonna be excited. Oh, and it's a stacked year as well. Because yeah, when you're when you're in the academy, you get given the opportunity to uh enter a sleep stake tickets, and there aren't that many. So I put my name in sort of like as a joke, kind of you've got to be in it to win it. Not unlike under the skin. And then I got the email being like, congratulations, like, oh no. And I literally had a chat with my acting agent Tori like that week saying, Oh, I've missed doing award season with you this year. Because last year we had the Gothams, the Indie Spirits, I like presented a BAFTA. We were in like all these really important rooms with cool people, and me trying to pretend that I'm not entirely overwhelmed and excited all at once. And yeah, and then we got in touch with Bill Kramer, the CEO of the Academy, and I'm like, yeah, we'll get you out. We'll make like a little ambassador role for you. We think you had a lot of value.

SPEAKER_00 47:50

Have you thought what you might wear?

SPEAKER_01 47:53

I am very fortunate where I have a very good relationship with Christian Dior, who starred me for most of my big awards shows. So I'll be me and my stylist Sarah will be rocking up to New Bonn Street to get fitted for something.

SPEAKER_00 48:09

Possibly, I love talking about things about which I know precisely nothing. But possibly a better call than Thierry Mugler, if you see what Mosrone was wearing at the Grammar's. There you go. That that's it. I have now dug such a hole for myself.

SPEAKER_01 48:23

Well, I I I I I'm aware. I'm a I'm a huge caperone, caperone fan.

SPEAKER_00 48:28

We need intro or outro music at this stage. Otherwise, you and I are just we're just gonna go off on one. It's all gonna end up really quite messy. Thank you, Adam. Here you go. Here's your copy of The Elephant Man. No, thank you very much. It's been a real, a real joy. Listen, listeners, tell people about this. Get people to listen and engage with this conversation. By the way, those of you, and I know some of you are in the events space, put this guy in front of your audiences. Because I know from 35 years' experience in the field that he will have an extraordinary effect, which let's face it, most won't. And the final thing I want to say, as I'm being given a signal to wrap up, and the music is getting louder and louder, is that I know you won't necessarily listen to this in sequence, dear listener. But next week, if you do listen in sequence, it's Harry Enfield. And I want you to tell your mates about that too, because I can't wait.

SPEAKER_01 49:23

Huge fan.

SPEAKER_00 49:24

Excellent. You better play listening to them. Thank you very much. Just between us over and out.