Sally Phillips is well known for her award winning acting, writing and comedy. She had roles in 'I'm Alan Partridge', 'Smack the Pony', 'Green Wing', and 'Miranda'; and in the US, Veep. In 2016 she fronted the documentary 'A World Without Down's Syndrome?' (BBC2). I think she should be better known for her disability rights advocacy. You can follow her on Twitter and Instagram.
We talk about types of clowning and why the clown always says ‘yes’; the challenges of older women roles in the entertainment industry and discuss the differences between US comedy and British comedy
We chat about the importance of faith to Sally and what the aphorism: there being two routes to God (love and suffering) means. We talk about embracing uncertainty, being curious and open minded and the practice of prayer.
The disability community is important to us. We both have children with disabilities. We talk in detail about how that impacts us, how the mainstream world interacts with the disabled and despite the challenges how to have fulfilled lives. How we’ve been taught to live in the moment.
Sally ends with advice for fledgling creatives and expectant mothers.
Ollie make guest start experience telling us the best thing about having Down’s.
Podcast and transcript below, video above.
Podcast links:
Apple Podcasts: https://apple.co/3gJTSuo
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Anchor: https://anchor.fm/benjamin-yeoh
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Transcript (unedited, typos likely)
Welcome to Ben Yeoh Chats…My personal podcast. If you're curious about the world, this show is for you!
What does it mean to be a clown? What does disability teach us as humans and as parents?
In this episode, I speak to Sally Phillips. We discussed how Sally thinks about comedy and how we found the joys and challenges of parenting a disabled child. If you enjoy the show, please like and subscribe as it helps others find the podcast.
Hey…everyone. I'm super excited to be chatting to Sally Phillips. Sally is an all-round amazing human, perhaps best known for her award-winning acting, comedy, writing, and directing, but I think she should perhaps be better known for her disability rights advocacy as well.
Sally, welcome.
Sally Phillips: Hi Ben, thank you for having me – lovely to be here. I'm looking forward to it.
Ben Yeoh: So, is it true (I think I read or heard somewhere) that you've been to four clown schools - I mean are there even four clown schools in this country or did you do the whole Jacques Lecoq thing or Italian Country Escape? Are there actually four clown schools or did you exaggerate?
Sally: There probably are four clown schools here and I did three of them here in fact. Philippe Gaulier, (you are correct) who used to teach with Jacques Lecoq. I did clown with him and he's the master. He's pretty much the best (I think).
He taught lots of things because there was a month of clowning and that was definitely his Piece de Resistance, and I studied with John Wright who did Trestle Theater Company. If you remember them with the huge masks, he taught in Middlesex for a long time. He's a great clown enthusiast and he had a company called, Told by An Idiot. He did amazing clown work.
Then I did with Angela de Castro. She is a Brazilian clown who worked with Slava on the Snowshow. She's legendary for running a Natzi Clown School in Buenos Aires, but it wasn't very Natzi when I did it here.
Sally: We said the dogs might bark. I've got three kids and four dogs. It's close to mammal hoarding, isn't it ?
Ben: I think you put it in your Instagram account mother.
Sally: Yes, we just got a puppy. I don't know why, well I do know why because I can't say “No” and I fell in love with these puppies. Someone said you are the breeders and they were really nice. I am going to show you the puppies, very cute.
Ben: That is super cute.
Sally: That is really hard to resist. But then Yana who I lived with, you just saw. She just as I was about to get one of these, got an English Bull Terrier puppy. So, I was like, “Oh we can't get a puppy now because you've got the English Bull Terrier and then the breeders kept getting in touch, saying you've skipped that later, would you like the next later and after a while I said, Yes I would really. So, we've just got this one. You know, how many dogs is too many? I would say four is too many. There’re no more drugs than our dogs.
Ben: Isn't that like this clowning technique, isn't it essentially the technique where you just YES and keep all the coming, and it's hilarious. Maybe it taught you too well and you've taken it.
Sally: Clown always says Yes, and in fact one of my disability advocacy friends calls me – she says you're Japanese Sally, can't say, No. The combination of just say, Yes, and see what happens. This always leads to disaster of course, which is why clowning is funny. Always saying Yes always leads to disaster and awkward situations and that's why clowns are really shy, but yes, not a good policy for life, it turns out.
Ben: I am guessing, in clowning you can do comedy, so I'm not completely well read up but you can have two schools of thought in clowning. There's the clown-clown and this kind of Bouffon clown?
Sally: Yes, that's exactly right.
Ben: Like how you do and you have a higher-lower form of doing real lower people?
Sally: I think one is “laughing at” so Bouffon came from the disability community, so in Paris, they used to have all the disabled people living in the forests outside of Paris and then once a year they would come in. That's the hunchback of Notre Dame. Come in and there would be a parade which everyone thought was hilarious where the king would play a pauper and these disabled people play kings and whatever. The Bouffon tradition comes out for that and in really pure Bouffon, people still put outfits on with sort of hunchbacks and lumps and bumps, and then they might say things like, “it's kind of satire, it's sort of horrible in a way. They thank you for putting me in the ghetto, and they are smiling.
I guess that isn't really satire but then on top of that, you have satire and wit which is just very cerebral and not many hearts. Clown, I think is human nature just in its most raw, nude, and uncertain form because I think really it's what happens when you take the mask off, so lots of clown school exercises to reveal what's going underneath. So, one thing that happened is Gaulier got four up at once, (I don't know if you've heard much about him but he's famously rude, he's just horrible to everyone, I mean it's sort of funny).
It hurts the person and the person's hurt makes you laugh and love them and it's great training for the industry. He gets four people up at once and he's videoing you. Then he has four of you sitting on a bench and he gets one person to stand up at a time and then he asks you questions when you're standing up and kind of humiliates you. He does that one by one, and then they replay their footage that they've actually been shooting the three people sitting on the bench. So, you don't know you're being filmed and it's completely gripping because people are laughing along with Gaulier jokes which always are very acerbic and spot-on about the person and feeling really sorry for the person and really frightened themselves about what was going to happen to them in a minute and thrilled that it wasn't them being humiliated. So, it was people with their defenses down because they thought they weren't being looked at. It's fascinating and also beautiful or sort of pathetic or pathetic uncertainty and hopes and dreams revealed and that’s what clown does really-really well.
We're both parents of people with disabilities. I think that's what is familiar to me about living in a special needs world. It does quite often feel like clown school with all the terrible pain of clown school. The hilarious recognition that we're all completely ridiculous. The more precious a part of your character is to you, the more ridiculous it is to other people.
Ben: I was quickly kind of reviewing over the last few days your comedy work and you just have such a vast range and your imagination. A lot of it's quite physical. I was just wondering, does that come from some of it being taught on things or is it just creative imagination from having to write because you've written skits and your sketch shows and now you're acting in all of these things as well?
Sally: The physical stuff. Well, I came into acting via physical theatre, so I did sort of sub-complicity style things. I toured the UK during A-level text, French A-level texts. Therese Desqueyroux, I played Guy de Maupassant, I played A Prostitute Dying of Syphilis, torturing Gay de Maupassant once he died because he didn’t give her a sympathetic write-up that kind of thing. Lots of cartwheeling and playing lots of different characters. That was very useful for going into sketches and with this training, I did French and Italian training and that was much more physical than British training. British training is very vocal and psychological, I think. I trained with someone who worked with Daddy of Four in Italy. There was a lot of mind in that. I guess I really liked it and I think it's a really interesting way. I think I often create characters or used to create characters outside in, so I'd get the costume, walk, hair and voice and then start putting the psychology in.
Then the other question about the imagination, I think I have always had a completely very lateral mind. I think that's partly to do with having this fractured upbringing being brought up overseas and changing countries every year and a half so the connections I'm making are not the same connections as everyone else. So, I think if everyone else had had my background, they wouldn't seem so lateral, but what is sort of normal to me seems really left field to other people. Then when you're in a situation where you're getting a genuine answer and everyone's laughing, it's my genuine answer to that question.
Ben: That makes a lot of sense. You've done some quite US comedy because of Veep and everything, is that quite different from British comedy as well, do you think?
Sally: I think um US comedy is quite different from British comedy, though they're getting more similar but Veep is actually a British Show.
Ben: Yes, it's the political comedy thing.
Sally: Yes, it was in London. It was interesting when the American crew took over. It was really interesting for me because the script had less intelligence which I wasn't expecting. It's not that they're less intelligent, but there was a lot more freedom and they were just a lot less repressed.
Ben: They are more physical acting rather than the gags.
Sally: Yes, and there was this sort of virtue, I say swearing with the British crew that sort of course comes from being enormously repressed and the Americans just have sex. So their stuff, they want to be talking about to shock. They had to be choked, this was a big joke and this is something I didn't even know was a thing. I suppose Michael Hutchins, they rang a vague bell but really not something that had appeared in my world but that that was where American comedy was at. It was quite different.
Ben: It's also noticeable because strong female leads, slightly older or older female leads as well and we don't see a lot of that on the screen really like female actors as they get older, don't really get parts. Actually, they're often not the writers or the directors as well and I wonder whether you think that's actually changing at all but before we even get on to the fact that we don't see much disability on our screens and all of the other things, we haven't even seen it in and seeing women on screen in these great roles. It doesn't seem to me like they're not necessarily written, although I guess that's part of it. Is it changing at all or is it still just the old power systems?
Sally: The figures are quite depressing. To me, it feels like it must be changing because I'm working…but the figures are really depressing. So, what's happening is now a parity of numbers, so it's something like 52% male parts, 48 female parts something like that but they are older men and young women.
Ben: And the men can kind of play any role and the women…
Sally: For example, I had lunch yesterday with Patricia Hodge. She's 70, I think or 72 something like that. She is playing the mother of Roger Allen or mother-in-law of Roger Allen who she played opposite 40 years ago. So, the same age, but she's now playing his mother and he's married to somebody in their late 30s. That's the screen thing. For example, in 2019, BAFTA's leading actress – they did a survey and they found that in the previous 20 years, the average age of the best actress nominees had gone down by 20 years whereas the guys had gone down by three years meaning that in 2019, Brad Pitt as the youngest male nominee was still three years older than Laura Dern as the oldest female nominee. So, now when people say to me, “my daughter wants to act, should she go to drama school. I kind of say, NO. Schools are great now for people between 17 and 25. So, if you used to be able to go to university and then drama school, somebody like Nicola Walker did that, she went to Cambridge and then went on to RADA ( I think). You've missed the boat if you're 25 because by the time you come out, you've really missed the boat and that's too late.
So, yes, I think there are parts written for women who are older but they routinely cast 20 years younger. A man in his 50s would have a wife in her 30s or 20s. So, it's not that the parts aren't there, it's just that what women actually look like and behave like and speak like and think like, isn't being represented by those people. So, then this pressure for someone like Nicole Kidman to present with a young face. Sort of baby face and have loads of fillers and all the rest of it. It's quite hard to know what to do, I haven't done any of that. I'm beginning to lose my nerve. I'm not going to do that. I don't need to do that, I do comedy.
Ben: I guess you've got to write and direct your own parts then but…
Sally: Then you see your neck and you are like, “Oh my god, is that really what it looks like. It’s you and different from 10 years ago.”
Ben: But then these gatekeepers are actually also not necessarily with the program either, so you're stuck there as well.
Sally: It is hard to know what to do because you have to sell these things because so much of it is aspirational. In our office, we have a way opposite, a tiny indie that makes boutique indie films and opposite us is Matthew Vaughn's Company that makes Kingsmen, and you just remember it. They've got a whole branding section. Just remind them that a lot of that is about then flogging the toys and nobody wants to look normal, do they? Everyone wants to escape with those films. It reminds me a bit of when I made this documentary about Down’s syndrome screening and I went to meet Professor George Church at Harvard Medical School who had been doing Sequenced the Genome, the human genome.
He was busy making a map, the connectome of all the...I don't have the language. I'm not a scientist. All the connections in the brain. I suppose doing the same. The brain, the connectome, is the brain equivalent of the genome. He said to me in the future, “we will be able to switch mental states so we might build a switch on an autistic state. If we've got a lot of data analysis to do quickly or we might want to switch on ADHD state if we want to be a performer, be a stand-up comedian, (there might be different states) and we might be able to switch in and out. He said to me but would anyone ever want to switch into a Down’s syndrome state. Of course, I think yes because Ollie does seem to be very happy and I think we've over prioritized intelligence or rational thoughts.
Ben: I'd agree, I was going to come to that. I was just saying that actually you're one of the humans in this world who've actually made me shed tears but not as you might have thought tears of joy because of your comedy, although maybe it came close but actually tears of empathy or loss while watching your documentary on Down’s and the screening. I had the impression as we know disability and disability in the family has plenty of challenges, but that people have completely missed the aspect there are plenty of joys, essentially being human and being human is all of these imperfections and all of these types of things as well and that. I guess people on the outside or even people kind of involved in well-intentioned areas of medicine and things, just don't see that lived experience or just somehow missed that and if you then cut all of this out, you're diminishing humanity which almost seems like too grandiose to sort of say but it kind of the point and that's part of what I got from your documentary work. I don't know if that's kind of one of the themes you were getting at?
Sally: I’m like you, I’m just someone who thinks too much probably about everything that presents itself in my life. Since that documentary, apart from thinking, Gosh, everything really is as corrupt as you thought it wasn't, as you thought it couldn't possibly be; so apart from that, I think it feels like we're on the crest of a wave of people beginning to realize that the brain isn't where everything is. So, there was that book about 10 years ago, the book on the guts. People made lots of jokes about George Bush's gut brain as opposed to his brain-brain. I was in the photographer's gallery today and there was a whole book on “Breath” talking about how we need to reconnect with the non-brain bits that make us human. This reemergence of – everyone seems to be meditating. People seem to be trying to cut the brain out to give themselves peace and to get breakthroughs and enlightenment. It seems like I just have to shut the brain off somehow.
I was talking to someone yesterday who's going, he just drives circuits in quite a fast car around his house to shut off the noise in his brain because it's not always helpful and the thing that struck me with the documentary was that all the people who've been in charge of defining, particularly learning disability, are people who have a predisposition towards thinking that intelligence is a priority because that's where they score highly. So, of course professors of medicine are going to value what they have very highly. But, we can see, sometimes not very clearly, through a bit of a fog that there really is plenty more – there is often a better way.
I find this quite interesting because the one area of learning disability that the establishment have been interested in is where there is obvious and impressive intelligence so autistic savants. That's very annoying for the autistic community because most of the autistic community are not savants… There's plenty more to say about that. I was called up on myself because we all have different levels of it. [Tell me when I’m talking too much by the way because you are equally as interesting as I am].
I was asked to talk at a conference for a profound and multiple learning disability which was ridiculous because I was being asked to talk at that because I was on the Tele in a sitcom. I didn't really know anything about it. Someone said to me (I think they were so nice, i don't think they said it when i was on stage) but they said you argue for people with Down’s syndrome by saying, “we're more alike than different. Look at our community, we're like you. We get married like you, we have jobs like you, we have hobbies like you, we like cooking like you, we love our families like you, and we go to school like you; and are lives worth living because of that and they were saying, “Well listen! our children are not like you in that way. They don't have independence like you. They don't go to school like you, they don't have jobs like you but yet they are deeply and profoundly loved and they make profound contributions to our family and sometimes it's by the fact that they can't do the thing. I realized that actually when Ollie goes through life, he feels like he's a great revealer of character. He brings good and bad behavior out of people.
I don't mean good behavior, I mean kindness, generosity and love, generosity of spirit, self-sacrifice, nobility, beauty). He brings this out of other people and sometimes people who don't have other places to express that beautiful part of themselves. So, sometimes it's through what he can't do that he builds community around himself and creates beauty. I just struggle with trying to explain that to people who aren't in our world. It sounds like because they just seem to believe that we all have Stockholm syndrome, that our children have us imprisoned and we’ve fallen in love. Maybe they're right. Maybe that is what's happened, but the reality is that that is how it appears to me.
Ben: That makes me think of two things; one is a recent film of the book, The Reason I Jump. Because I think there may be a slight glimpse to some others about this because this is part of the community which is still quite different to those who are not because they are not like you. The other thing I thought I raised in my head was also maybe faith because I know you have faith. I unfortunately don't have faith and I really like it but a lot of faith-based people or communities I meet, instinctively seem to understand this easier and reveal those good qualities of being human. I think there is something. The two points you said – know this other that it's not all about the brain, that could be whatever you want to call it, spiritual, being human or something that quality of other and that acceptance that you're going to have stuff which is really bad but that's also part of being human and actually to not have that somehow makes you less human and that type of thing as well. But, I do think, there is this thing, it's okay not being like others as well but you have this thing; we are shared in love and we are shared in grief. We're shared in all of these other things which actually makes us all already human.
Sally: I think there's something that is common to all humans that religions sometimes get right and sometimes get wrong, but I feel like there's a truth that everyone sort of recognizes deep down whether or not you believe. There's a lot of doubt in faith and there's a lot of faith in doubt, (I think). I dig where there's an X and it seems to come up with the goods sometimes, but the church is just endlessly disappointing.
Ben: Yes, I was watching a documentary a few weeks ago, there's a convent of nuns actually really near where I live in North Kensington up the top of Ladbroke Grove.
Sally: Yes, The Carmelite Nuns! I really want to go there.
Ben: You don’t go away, they said the person who managed to film a documentary, I think wrote them letters every month for five years in order to go because they don't want their practice disturbed. They don't speak very much of the day and part of their practice is they are, they're preying on humanity's behalf. So, you can ring them up and they will do prayers for you.
Sally: This is what I've started doing, this is my practice now. So, I pray for other people.
Ben: So, will you be silent for most of the day?
Sally: No, obviously not silence, but I’m trying to do contemplative centering prayer without words. I find this completely fascinating, and so many people in so many faiths are doing exactly that even if you're doing an insight timer.
Ben: Exactly, and sometimes people do it by chance which is weirdly the same thing because you're just repeating the same phrase, not many words.
Sally: And that stimulates your vagus nerve which makes you feel better. So, I've got a really good friend. I was at New College Oxford and I had a friend there Lucy, who's a zoologist who studied under Dawkins. We've never talked about faith because it's just embarrassing.
Ben: I feel people should talk about it more. I think maybe this is one thing which could start happen a little bit more because people seem almost embarrassed to talk about it but there are obviously so many different kinds and a lot of people are involved in it so it seems to me odd that when we don't, in other sense in good faith talking about it; obviously you have extremes which won't work but most people I don't think are there.
Sally: Yes, I think we have to get over our uncertainty aversion and there aren't words. I think that's the thing we feel uncomfortable in areas where there aren't words.
Ben: So you are saying your friend under Dawkins probably has a very different...
Sally: She has become much less certain, so we've both become much less certain. I think that's really good, so we're now in this no-man's land and beginning to talk about this stuff. So, she got cancer and being a scientist, went about what their conditions are, who gets better, who's most likely to get better and one of the five characteristics was people with a faith. She was like, “I better get myself a faith.
Ben: That's how I feel a bit.
Sally: So, she started investigating why it might, what kinds might, what the practices were and she's got into chanting. She does meditation every day, open sea swimming. There was a thing on Instagram, this guy “The Portable Priest” who has been going out with an accordion during lockdown doing the divine office through Portobello and he put a thing on Instagram. The thing is to prove that God doesn't exist. Atheists have to go to every corner of the universe and prove He's not there, whereas we just need to prove the resurrection is true and then we've won. It was something like that and it made me furious. I stood on it. I want to just leave it, leave goodness sake, it doesn't matter and then three days later, I put a thing. I wrote underneath going (Ironically though) approaching every corner of the universe with a curious and open mind is an activity that's much more likely to an earth God than sitting on your sofa with your arms folded going, “look I’ve won and I’m better than you. Because that's the sort of open hearted search. It's the position of welcome that is really where you reference a good about religion in its practices of religion. They sort of break down this dualistic right-wrong, black-white, this categorization is an identity politics. It takes down the walls and in trying to build those communities, that takes down the walls between people. Forgiveness would be a really obvious example of how you are taking down a wall. I think that's good but there's plenty of ways of doing that without religion and one of the ways is unfortunately suffering or becoming dependent. I think that is what suddenly being presented with a child with a disability does.
Ben: And I guess to reverse, I was thinking comedy is strangely one of the ways which can sometimes do it, sometimes don’t as well. I just was going to, while I remember the reflection on the Nun in this documentary, they spoke to the Abbess who leads the convent. I don't know quite hierarchical, but anyway the conclusion was, she essentially had lost her faith or had lost (I’m not sure I should be doing this anymore) but she is still dead for an extraordinary long amount of time, something like several years, and she continued to go through this while she was essentially having this. I'm not sure about it anymore but actually continuing with this kind of practice of faith as she had sort of lost faith. She went to Cambridge and she graduated from Cambridge (I think in philosophy or something like this) and then heard about these nuns and basically camped on their door. Father didn't let her go there before she'd gone to university, decided this was going to be it and then dedicated her life to this practice. But, anyway, I just thought it's incredible what faith, what you can do from it. The flip side to what you said is this, how to say it without it sounding wrong, the suffering part and I think this is what you alluded to as well. The suffering part is really revealing in a way which you kind of go, well you're not glorifying suffering and you're not saying anything, oh this is a good thing. But if it has come into your life and you can embrace it, and really hate this idea of leaning in, but it's the idea that if it doesn't break you somehow and you take it in as a realization, it does open up so many things which would have been close to you and that's certainly been in my case. This whole route of area of life and humanity which I wouldn't have contemplated, had In't had to go down a route of dealing with disability in the community and things not being how they would come out. I don't know what you're thinking about that kind of suffering angle.
Sally: I don't know, I have read a thing saying there's two routes to god, two fast tracks. One is suffering and one is love and I think we get both. So, we get extra love. There is something about reaching the end of your own ability, isn't that? That wall, where you hit the wall and you go, “I actually can't do it and when you reach that point, that's when you have to rely on friends and family and I think for people like you and I who are super privileged.
Ben: Very well resourced.
Sally: Yes, very well resourced and very well educated. We have lots and lots of opportunities.
It is a real privilege to have our lives amplified by being able to see things from the other side of the river. I feel that I have connections with so many more people than I would have had. I give and receive empathy with many more people and I’m also much more courageous (I think). Because I have more limits. It's a bit like things travel faster down a narrower tube, so your life gets narrower but things happen with more force or something.
Ben: Because of the limits, but it is noted no one don't want to give anyone’s impression, we're like trivializing the challenges or the challenges it gives sort of everyone and everything within that.
Sally: I think the day after a hangover, you feel really clean. Maybe you don't know. I don't really drink. You know the thing, if you have ever heard of a hangover, once it's passed, you feel sort of fresh. You feel born.
Ben: Weirdly detoxed!
Sally: Weirdly detox and it's a bit the same with these terrible struggles. I remember Ollie trying to get his shoes on to go to school and he didn't want to go to school and just being kicked again and again and again in the face.
Ben: We've had that with sleep. I don't know what your relationship to sleep was but there was a period of that we were having a particularly troublesome period as well, but where you go through this end and when you get like, “Well, I haven't slept for 24 hours. It’s kind of somehow going through the other side because otherwise maybe this is why a lot of families also splinter as well because if you can't somehow get to that other side, they just haven't gone to sleep for whatever reasons and you've somehow got to get to the other side.
Sally: Yeah. Sleep, that's just t torture. There's no upside from that. I'll tell you what's weird, like having come out the other end of the sleep. I now find that being over tired is like a comfort blanket. You know that state where you do feel drunk and it just feels cozy now, feels like I’ve got a little sort of shed in my head and that's because there were five six years where the kids were really cute but I wasn't getting any sleep. So, I wasn't really leaving the house. Now it feels like going back to a family holiday or something. Do you feel weirdly creative then as well or you may not be but you kind of feel like “Oh i kind of could do anything in this state but you probably can't but...
Sally: Yes, probably, something like that. The main thing to me is that it feels like being under one of those weighted blankets. My hands are full of weighted blankets, aren't you?
Ben: No, we didn't really. We've got three yoga balls instead. The weighted blanket didn't really work for us. We haven't really done a holiday significantly over the last 12 years but we tried a little bit and we've had to bring the yoga ball with us. We forgot a few weeks ago and we ended up having to rely on Amazon to deliver one because it wasn't going well without one. We managed to bring some other things such as a sleeping bag, this sleeping bag which he slept in forever, a particular kind of juice bottle and a lot of other particular kinds of things but we somehow managed. We remembered to bring the pump because you can't blow them up otherwise but we'd actually manage to forget the ball but yes…
Sally: I feel for you…I feel for you. Yes, we have those things. Ollie is doing this thing at the moment where he just decides to leave.
Ben: Out of the house or just out of the room?
Sally: Out of the house.
Ben: Yeah, we haven't had that yet, although we could.
Sally: He is off the age where we had a thing where they let him go from a sports camp because he's 16 and he might have done travel training and he might be getting home alone and then of course he went looking after….
Ben: And why wouldn't we believe him because he told us?
Sally: Yes, and he went looking for his girlfriend's house in Twickenham and he didn't know where she lived, didn't have an address or anything. So, we're having a few conversations with the police, like how you are going to make sure it doesn't happen again. I just said this time, I think it is going to happen again. I think I can almost guarantee it's going to happen again and there's nothing we can really do about it but we can minimize the danger when it happens.
[_44:04_]
Ben: Another family, I don't know how I feel about this because he hasn't done this without but they're using these Apple AirTags but just with a key or a thing that they take with them and then you can track them through the AirTag.
Sally: Yes, we had those and he took them off the shoes. And he rips all his clothes up, that's the thing I can't really cope with. I can cope with it. I am coping with it but I just have this. When part of you has given up and died. The part of me that's given up and died is like that, I’m never going to have a pension, I’m going to be working forever because Ollie rips up pants and he's in men's pants and he rip. He'll wear them once and then rip them up. I don't know where to get really cheap pants. Marks & Spencers 21 crates for 3.
Ben: Yes, you need a supply line to the Bangladesh factory or something.
Sally: That's still 7 pounds per pair that's, 7 pounds of pants a day and then there's usually a T-shirt and jumper and pair of trousers every week as well, coats.
Ben: Wow, every week, that's tough though.
Sally: Every week, it really adds up. I can't buy him clothes because that thing if you're not going to have any clothes, you're going to have clothes because I’m going to have to clothe you.
Ben: Well, there is this bit, isn't there? I've always described it and I guess this is a little bit like the social model. You want to try make the world come as close to you as possible but there are certain things like running around naked all the time, it just isn't quite possible if you want to go out and we have this opposite problem where my one, if at all possible, would like to never wear trousers and he's now 12. When you're 4, 5, 6, 7, it is kind of cute when you get away from this that, as you continue to get older…
Sally: Is he wearing shorts?
Ben: No, nothing. He would just put half naked, is his preference and this doesn’t bother him. He's just like, why it's kind of hot and uncomfortable, why would I bother, so we have to work very hard to keep them on and then we have the wash issues as opposed to actually tearing them up. We haven’t thought about it though there are a lot of broken things and there's still some broken things going on particularly, broken technology is not going to be good for the budget.
Sally: No, heartbreaking. It is really hard to know what to do, isn't it? These spiritual practices like even the non-religious ones are about surrendering, aren't they? That's what mindfulness is supposed to be, is it mindfulness? Yes mindfulness, I’m sitting here and my thought will come along and I just let it go. I welcome it and let it go and I feel like we're doing that all the time. I have to laugh with a friend of mine, who has a very severely disabled child. She says, we're never going to buy those mindful coloring books, are we? Because we're being forced to do mindfulness things all the time. Like we can't go fast, we literally can't go fast. Leaving the house, there's a massive checklist of things.
Ben: People don't understand, it can take an hour just to get out and you kind of feel let's just give up. We're only going to do that. I guess this is sort of mindfulness but what he's taught me is quite often to live in the moment though as well because they do and it irritates me because I think A-Plus parenting for an hour and then a moth will come along. He hates moths and it was like, “Oh that was worth nothing because in a moment, the moth is the worst thing in the world, so of course you're going to scream out.
Sally: Yes, because if you don't live in the moment and if you don't sort of take it in, the story you tell yourself about what's happening can be much too bleak because of these big awful events. So, Ollie can be good 99% of a day and then that 1% just will be so bad that you remember the day as being the day when the MacBook was put in the bath. Whereas actually he was really good up to that point. I remember, he went to a special needs school which is a disaster because he got expelled from the mainstream, that's another conversation for another day. He just hated it, really hated it and smashed up the classroom and having gone in much more able, too able for the school, came out with the most support of anyone that most difficult child.
You've got to do what your teachers say Ollie, got to do what they say and he said, I do sometimes. I said, that’s true you do sometimes what they say, but you do sometimes expose yourself to the Muslim girls in your class and that's really problematic.
Ben: So many things with nowhere we felt secondary, so he does most of his time. Technically, I have to say educated otherwise not at something or whatever EOTS but is essentially a kind of home education for four-fifths of this week partly because of not being able to find anywhere which we thought would fit in with that.
Sally: It's difficult but also as I just said that I felt really guilty as though I shouldn't have said that because that's not for him to say and I think we are in this difficult situation with advocacy where a lot of people with disabilities or disabled people. They prefer different groups to be called different things and regard their parents as the enemy. They really suffered under either our neglect or our love or our complaining because of how hard and difficult to hear. I mean, someone I met quite earlier, an absolutely amazing wonderful person. Her daughter is 20 years older than Ollie.
When Lizzie was born, written a book about her feelings, about the diagnosis and the early years to help other parents. Never in a million years imagining that Lizzie would grow up to be able to read it. She did and I think that was tough.
Ben: It was definitely seen in the autistic community as well with a lot #actuallyautistic and obviously in that community, they can kind of advocate a lot for themselves and there is a kind of a big gap of understanding between what they have said and maybe their parents in the community, so that's definitely a thing. But then there's those who can't advocate so well for themselves and I do think many parents just do the best that they can and when this is always pretty tough.
I was hearing the other day that you managed to get all of your children washing up at the same time, was this just one hour, one week or did you manage because I thought, Oh my God, that is a star parenting.
Sally: Yes, that something that was brought to our family by another special needs parent called Colette Lloyd, who is a majestic human being. She has got four kids and she and her husband David instituted Washing Up Club and we went on holiday with them. We had a rotor and we had a Washing Up Club. They have gone in and out. Actually, I am sensing that they don’t but actually they do. They stack the dishwasher. They do clean the table and stack the dishwasher now, but when they were little, it was that sort of cute thing of standing on a chair and the sink full of bubbles, putting an apron on them and making a massive mess and then running another sink and putting one of them in as a bath. Yes, I have had them doing washing up and it is quite a good way to manage boys like to talk when they're not looking at you. So, they prefer to be in the car or facing away or walking away.
Ben: Also, maybe doing something else, sort of intuitive.
Sally: It's much less confronting, isn't it to be.
Ben: I'm lucky if they'll be off their screens for more than like an hour at that time but maybe that's it because they can sometimes talk to you while on screen so maybe they just do need something else, I don't think Washing Up Club would go very far in my family. I feel like trying it.
Sally: They didn’t enjoy it. I realized that you have to find ways of getting by, don't you? You have to find ways of coping and ways of doing all the unpleasant things and if you do all the unpleasant things, you get a bit broken. So, I sneak stuff into the daily routine. After a while they become blind to it because that's part of the daily routine that's what happens. Do you know what I mean?
Ben: Yes, it seems pretty smart, a star parenting tip…
Sally: I feel like I’m interacting with parenting like a plow interacts with fields. My realization this week has been that the siblings think that Ollie's two siblings are just really angry with him. They're just really angry with the way he controls things.
Ben: Just takes all the time.
Sally: Immovable objects; and he's so stubborn. It just takes such effort and they're so crossed. When they scream, “I hate him”, I go, “No you don't, no you don't" and realizing that I need to say that's understandable.
Ben: I think we have said that you can hate someone but love someone as well.
Sally: I met a sibling. Well, actually one of Tom's friend's parents has an autistic brother and there were lots and lots of challenging behavior when she was growing up. She said to me, I feel like my parents trained me to be neat because I wasn't allowed to be difficult. My needs had to come second because obviously if Ollie runs away, we have to go find him. I can't carry on building Darth Vader, Lego Castle. I have to go find Ollie and that would take me three hours. Then we talk to the police and then we have to do a police report and we have to do a social worker report. Social workers have to come see you. So yes, I just realized that I’ve not been allowing them to express negative emotions. I think you need to stay on top of things, you need to be looking on the right side. You need to stay positive because otherwise you go under.
Ben: But you've realized it now, so there is also…
Sally: Yes, I’m so pathetic when I have a new realization. I said it straight away. You may be feeling very negatively and that's absolutely fine. You're allowed to have those feelings and you must just do what you need to do. I'm so see-through.
Ben: We have that with the other one like that you can't. You still have a film which has got some sort of feel-good message which they see through in five seconds. It's like, “well we're not needing to or bothering to watch that movie or that message. That reminds me of two other things I was going to touch on. One was parable (which I’m lucky I think i came too late) because I really don't like it about the story about Holland and Holland and Italy, which comes through in our community because there seems to be so much wrong with it but I’d be better if there's a better parable but it's actually how a lot of people outside of the community come and see this idea.
I can't quite remember but isn't it it's like, you want to go to Italy and you end up in Holland. Therefore, showing you don't know anything about Italy or Holland but actually Holland turns out to be okay which just seems that this is kind of wrong on all fronts but...
[_58:45_]
Sally: The reason I hate it, I just associate it with diagnosis. We got given it four or five times when Ollie was diagnosed, and your whole life, you wanted to go to Italy. You've planned what you'll eat, what you'll wear. You're looking forward to seeing the Colosseum and the Statue of David, the Leaning Tower of Pisa, eating pizza on a Neapolitan street. Maybe even taking a boat trip to Capri and then you're sitting on the runway and the pilots say, we've been diverted to Holland. You're going, “In Holland? Do you say Holland? I don't want to go to Holland. But unfortunately, you have to go to Holland for life. You will never be allowed to visit Italy. Oh no, this dream of yours is dead. You are imprisoned in Holland for the rest of your natural life. Since you're forced to be in Holland, you realize there are actually some things recommended and just they don't then go on to say the legal marijuana and the sex part, tulips and…
Ben: They can make pizza there too, but…
Sally: Yes, they can make pizza there too, exactly. It's quite flat and you might enjoy cycling. So, the point of it is that things aren't what you’ve expected but they're still nice, they're a bit different but they're still nice. You're still on holiday…for life. Yes, I do hate that but I think it's mainly because I hate anything trite and once that is fit for all, it may get better at the point of diagnosis.
[_60:41_]
Ben: There must be that they want to change the whole population but it must be an American writer. I guess the other point on this is – well I wonder I've heard you comment on him as well so this is this consequentialist, utilitarian philosopher, Peter Singer. I kind of wonder what he'd make of this. He doesn't go down very well in the disability community but is completely loved in the animal rights community and I think what we've discussed seems to me to be the real case, and I think he's accepted that because they've got this idea of utilitarian suffering and therefore eradicating that. It is kind of good as sort of his position but doesn't actually realize the worth of people or the worth of this experience which could be anything that they create, so you end up with this very reductionist kind of viewpoint. I haven't quite managed to square it with how well he views animals but obviously I guess it's some sort of utilitarian suffering thing, but it does seem to be….?
Sally: I think he's focused on eroding the boundaries between humans and animals. He's a vegan and they all seem to be vegans which is interesting. So, I got invited to a philosopher's dinner at Corpus Christi, with not Peter Singer, but Julian Savulescu and the other one at Oxford. Anyway, big transhumanists both and they seemed to be just more focused on eroding, defining the difference between a very intelligent animal and a human being. He doesn't seem to have any self-knowledge or desire to survive. I suppose they're chipping away at this sense that humans might have a soul when animals might not. That is not all quite interesting but unfortunately to elevate the gorilla or elevate the cow, they're stamping on people with profound multiple learning disabilities. So, they've got this profound multiple disability. They sense this thing about personhood, so who qualifies as being a person and who qualifies who gets to live, what are the objectives of life. So, for somebody with a faith, it's quite interesting for me to look at my own definition.
So, I had a long conversation with John Harris at Manchester University, Professor of Ethics. He was basically saying, (it seemed to me I may have misunderstood him) but he seemed to be saying that “An optimum life would be one that was long and had many different options. So, then that was interesting because that to me wasn't the definition at all of a good life. I mean if I think of people have been important for humanity, people with disabilities who've had short and painful lives and really contributed enormously to humanity, so then there's a difference between the life that I might want for myself and the life that's good for other people which is where we come back to this negative capability forging bonds. Like where there's a lack, something rushes in and it forms links between people. I don't know what I’m talking about, Benjamin, but this is what I think about when I’m in the shower.
So, where you're vulnerable, like as an actor if you're vulnerable if people rush towards you and where you have need, people often feel for you, sometimes help you and you create links between people. So, if we move away from individualism and start thinking about people as coherent groups as cohering, then (I don't know) it's different, isn't it?
Ben: Yes, and I think also I’m a little bit worried about that view and sense that if you just go a little bit back in history, not even that far – if you kind of say either this difference, you would have said, “well women are lesser people, minorities are lesser people, slaves are lesser people and you take this consequentialist view, you don't end up with very much. But yes, there is this thing about…
Sally: It's really-really interesting, so when I started making my Down’s syndrome documentary, I’m a child of the 70s because I think I’m much older than you and I just assumed that everyone thought that everyone was equal. I thought surely that's our baseline starting position. I was astonished to discover it just really wasn't. They had absolutely no qualms about saying that people just were not equal. That was pretty fiction.
It's kind of amazing. The Babylonian King, whenever 2000 years ago, put that on his stone law “A person's female slave is worth less than a male slave is worth less than a middle-class person or whatever all the way up to the elite” and classified them in terms of money and compensation. That's the whole point of the last sort of fifty hundred years as we've changed our view on that and that we view humans as equal but actually like you said in practice, we may not be as close to that as some of us might think.
Sally: No, I think we're getting further away from it. I think it's partly to do with the fact that (I don't have the better terms) but the fact that we are increasingly becoming units of data. So, we're measuring everything. That's the way our politics operates and so human beings are a dataset, so the decisions are made. For the first time, it seems in British history, it is beneficial for us all to aim towards the middle because if you're an outlier in any area – I'm worried about the advent of personalized medicine so all these COVID tests. I'm an imaginative person, so maybe they've made it impossible for this to happen but I bet they haven't. They've been collecting our DNA in vast quantities, so the hundred thousand genome project very quickly went up to the million genome projects coming up Great Ormond Street. So, they could be collecting all our DNA.
GCHQ is in charge of protecting that data because that's how important it is. If the government can sequence the British genome, they can know which diseases we're most likely to develop and they can invest, the utilitarian, they can do the most good for the most people but that would mean that if you got a rare cancer, you are going to be underserved. Anything unusual, you're going to be underserved. So, it's only the people and you can already see this is happening a bit with education that it's aiming at the middle. If you've got special needs or if you're gifted, it doesn't work for you. The education system just simply doesn't work for you.
Ben: I'm going to think about that one, that is kind of quite terrifying.
Sally: Listen, I don't know what I’m talking about. If we talk to very clever listeners and come back with an answer, I’m just a sitcom actress but this is how it seems to me. This is my understanding.
Ben: I have two thoughts. One is that I’d hope they would look at the valuable part of where this might be and actually if I look, I think actually we have got a lot of areas for rare diseases and things come through. If anything, the problem is we don't do very well for poor country diseases because there's no money in it; that's kind of one observation. Although there probably is something in that data because it can be used for good or for ill.
Sally: But they haven't sequenced the genome yet, have they? They haven't done it yet. They have done it in Iceland, so here they haven't done it yet.
Ben: We've got the human genome overall but we don't have it to match population data like they do in Iceland, that’s true.
Sally: Yes, so what I can do is I can get my genome sequence and I can then get a readout for a thousand dollars, I can.
Ben: And they can say you've got a 32% chance of being outside or something like that.
Sally: And they can tell me what to eat, and they can say yes this is the kind of exercise you should be doing, this is the kind of food you should be eating. It's a massive market. The hundreds of billions. I can't remember what it is. This is a huge market.
Ben: The other thing it brought to mind was this idea that not everything that counts, can be counted so that there's a load of valuable things which you just can't measure and count, love, poetry, all of this stuff.
Sally: Would you say all the most important things, not be counted.
Ben: So, I think I guess all we are measuring...
Sally: Well, I wonder what's happening. I can see that because it can’t be measured, because the contribution can't be measured in pounds, you could argue that it could be and I think what we need to do is find some kind of equation or algorithm that will demonstrate that it contributes in pounds. The people are cutting arts courses and cutting arts education.
There's lots of examples but I feel like we really don't value what the arts contribute because it's very hard to measure what the arts contribute and what they contribute is things like empathy.
Ben: Yes, these things are really hard to measure, but very important. Great! Well, maybe wrapping up with a last couple of questions. We had one who came through on Twitter which was, “I think we need to do with whether comedy and activism can go together and I guess maybe it's hinting on fact that some comedies are quite political or can be but a lot of comedy just doesn't need to be. In fact some comedians who will say, “it's only comedy if you're not making a political point” and some people who only want to make their comedy to be saying some messaging and something else and obviously you got an advocacy, activism, lying to your work but actually a lot of your comedy is just for laughs, is that something which you feel have to balance or is it naturally comes out depending on the work you're doing?
Sally: Well, I think quite a lot, Matt Fraser. He's a great actor with a visible disability. He says that the more activism you do, the less acting you get to do. So, you have to be very careful. I feel that I need to be careful to be mainly a comedian actor because I lose my value as an activist, if I’m not that. So, there's an element. If you are only making points, it's like save your art, if you're only making sort of politically correct disability community friendly jokes, they stop being stopped and they stop being truthful because you sort of have to be talking out of uncertainty for them to be any good, for you to be discovering something new.
So, I think comedy is always after different kinds of truths. Is that right? No comedy's not always about anything, you can't say. Sometimes comedy is just literally like relief. There are some comedians who focus on speaking while holding a mirror up to society and there's others who just want to give you a break. Both are fine and then there's people who do both like Milton Jones for example. He does a lot of jokes that just make you laugh because they are stupid and then he does do the old political thing or he'll say something. He does say things with an edge like this is a very-very old joke of his. He did one about those cultures where they believe that taking photographs of you steals your soul, that's mad, isn't it? Because that would mean that people who have photographed a lot like supermodels would have really dull and vacant personalities.
So, just turn things around. So, comedy is really good for looking at things from a different angle and it can be for a purpose, so pure comedy can be for a purpose or not, both are fine. I have found it very useful to be able to make jokes in very dry presentations, so it was very useful. So, I gave a speech to the Royal College of Obstetricians and Gynecologists. There's 4000 of them who are delivering prenatal care and delivering the tests. It was really useful to be able to make a lot of jokes because if you just stand up there and just harangue, doing a very bad joke in our community, you will be able to make a shit sandwich.
[_77:08_]
Ben: Haranguing them straight up was not going to have as much impact.
Sally: Rather than saying you were doing a great job which they hadn't really been doing, just do a joke. It is really-really useful as everyone knows comedy is a very useful rhetorical tool and is very useful for reducing fear. Sweetening pills and so it's a very useful tool for advocacy but I don't particularly want to do a sitcom making those points. I want to keep the comedy pure.
Ben: It makes a lot of sense. Last question would be, do you have any advice to maybe young people or young creatives or perhaps advice to expectant mothers or some thoughts along those lines.
Sally: Maybe it's the same thing. Very different things, maybe that is exactly the same thing, maybe that would be more healthy for both to think about it that way. The thing I say to creatives is art makes art so just do it and if you don't do it, you become a critic and you start comparing yourself to other people. There's something about making the stuff that keeps you humble and keeps you creative. So even if you're making terrible stuff, you're learning and you're expressing yourself and you're finding out who you are and with writings, nothing's ever wasted.
So, art makes art and I find I can write quite quickly now partly because I'm quite old but also because I’ve written so many unsuccessful things that I have cupboards and cupboards full of characters and jokes that might fit this situation like, “Oh, I might have a thing in back here. Oh, yes this person works quite well.
So, it's like sketchbooks of people and conversations and things like that. So, yeah just make stuff. You want to make films, make them on your phone. If you want to make music, just practice and there's something called the Artist's Way that I think is really good. It's a book, it's a course. You can do it on your own and there's two central practices, I do about half the time, writing pages in the morning and things like that.
Then expectant mothers, people expecting babies, you are hoping to go to Italy. No, don't be afraid. It's going to be fine and you're going to have the most amazing adventure. The people run marathons, people do IronMan and people do Tough Mudder because there's something about a kick in doing the hard stuff. So, it’s going to be loads of funny stuff but there is also a kick in doing the reps and becoming a special needs parent.
So, to an expectant mother, apart from saying you're going to Holland, it's going to be amazing. You're going to get completely off your head and go on a canal boat by tulips. I would say don't be afraid. Someone said to me actually that the Special Needs Club is one that nobody wants to join but that once you do, you realize that all the best people in the world are in it with you. It's definitely been true for me that I have met the most incredible people; the most inspiring and hilarious women who don't sweat the small stuff. I haven't met so many dads actually but I think that's good.
I did notice when I did the documentary that the mums were out batting for the cause on Facebook and the dads were brilliant on Twitter. I think the dads just hang out in different places and do slightly different things. And it's not just the parents, I have got some proper friends with Down’s syndrome and with autism now. The other thing I’ve realized is that just now there's a whole rash of people on the comedy circuit who are getting diagnosed with ADHD. So, there's a lot more people.
Ben: Yes, and actually some with autism as well. Hannah Gadsby. A very great advocate and really insightful.
Sally: I think lots of the people we thought that disability was very different and actually it turns out we've been walking among you the whole time. Your granny, your auntie, that uncle that had five pairs of glasses and kept losing them, that very funny cousin; we've probably all got diagnoses. That's why utilitarianism really falls down because there is no meaning, there is no person who is exactly average. We're all somewhere on some spectrum, aren't we?
This is Ollie.
Ben: Hello, really good to meet you.
So, we're going to be finishing up. Would you like to say anything?
Sally: We've been talking about Down’s syndrome and having a disability. How is that for you?
Ollie: It's been good.
Sally: What's the best bit about having Down’s syndrome?
Ollie: You have loads of friends.
Sally: And what's the worst bit?
Ollie: I don’t know.
Sally: Did you have a good time?
Ollie: Yes.
Really thank you Sally, thank you Ollie. That has been a really amazing chat. Thank you so much.