- [Announcer] Welcome to TPGi's Real People, Real Stories podcast, where you'll find interesting and diverse stories from folks working to make the world a more inclusive place.

- Hey, welcome to Real People, Real Stories podcast, brought to you by TPGi. I am your host, Mark Miller, thanking you for helping us keep it accessible. Do us a favor, if you're enjoying the Real People, Real Stories podcast, share it, tell somebody about it. Hey, even link to it from your accessible website. Welcome, everybody, thanks again for joining us. I want to jump right in, and first of all, welcome once again to the show our producer, Dara. It's wonderful to have you showing up as a regular and jump right in with our guest Phyllida. Did I do good on the name?

- Yeah, you did good.

- Yes, as I practiced beforehand. I practiced beforehand so, and so I wanna kind of dive right into your story here. And you know, I understand that you're the Chief Executive Officer of a company and that, in that company kind of involves all sorts of different organizations. Can you tell us a little bit about what you are, about, what that's about, and maybe a little bit how it came about?

- Of course, yes, so hello, yes, I'm Phyllida Swift. Yeah, I am the Chief Exec of a charity called Face Equality International. So we are a membership first and foremost of other charities, other not-for-profits other support groups. Our focus is the facial-difference community. So what does that mean? Sometimes you hear terms like disfigurement like deformity. We tend to kind of vary the language that we use to be as inclusive as possible. So facial difference means any kind of appearance effecting condition that could be from birth, it could be acquired or episodic. So that includes things like a cranial facial condition, a clef lip and palate is very common. Trauma and illness can be some of the kind of acquired facial differences. And then episodic facial differences like skin conditions that can come and go. Me, myself, I have facial scarring and that is where my interest in this space comes. So in 2015, I was in a car accident. I was 22 years old and I was supposed to be volunteering in Ghana and we were driving overnight, was supposed to be going away for the weekend. We were a bunch of volunteers driving around this horrible road where the drivers there are just absolute maniacs. And we were driving overnight and our driver tried to overtake and basically, the whole side of the van that I was on just crumbled in and that was where my face was. So I came out with a whole host of different injuries. Everybody in the van survived, but came out, as I said, lots of different injuries and lots of broken bones and lots of time spent in hospital there. So I spent about a week in hospital in Ghana, and then about a week in hospital back here in the UK where I'm from, which made me appreciate the NHS here and the healthcare that we have.

- Yes.

- That's too, the first kind of thing I remember is waking up in a van with, and just touching my face and feeling it cut open. And then I remember kind of waking up again on a road and then waking up again where they were flinging me on a waiting room table and sewing me up there and then. So it was pretty horrific. And I'm not one to sensationalize, but it was, it was like a horror story. And I think as I'm sure lots of you can, lots of the people that you speak to can attest to ongoing medical treatment, spending time in and out hospitals, spending time recovering, that is a lot. But for me, it was the fact that I now had a big old scar on my face.

- Mm.

- Like the scar on my face runs from the top of my head down to the bottom of my cheek. And where I didn't have the best surgical care in that immediate aftermath, it's not very kind of aligned. It's not as, I guess, aesthetic as it could possibly be, had I had top plastic surgeons at my disposal, and nor have I gone back for lots of scar revision surgeries. So I was now this 22-year-old girl in university now associated with this thing that I know society sees as largely ugly, largely the mark of a villain, of a bond villain of someone not to be trusted, someone immoral, or someone vulnerable. Every time you see someone with a facial scar on screen in the media, they are the villain, they are the bad person, they are not to be trusted. And you know what, that just really drove me wild. And that was kind of the first thing, the first spark that was lit within me to say, "Well, actually, no, there's something that can be done about that. I wanted to reshape the narrative that dictates our perception of scars. And I wanted to prove people wrong. I wanted to prove to people that scars are something to celebrate and that I can still feel confident, I can still feel beautiful with a scar on my face. And, yeah, that's the very long and short.

- Thank you for that. And I know it's not always easy probably in, and people are probably asking you to recount that all the time, so we appreciate you doing that. So back in, years back, I worked with a gentleman who has a similar story and he ended up with facial scarring as well. And just thinking about that as you were talking, you know, in, and also in the way that you laid out sort of the different ways somebody could come up with something that's not, you know, that's different in their face. What really strikes me as one is that you were a young woman when this happened, and everything you said about scarring, I feel like is sort of times two or times 10 for a young girl versus a guy, you know, because I think that those things can be true as well for a guy, but it also might be tough or it might be, you know, it might in enhance some of those, what we consider to be positive masculine traits. And the fact that this happened to you at 20 years old means that you spent quite a bit of your life without the scarring, and then, or moving on with it. What I'm wondering is, as a young woman who kind of one day didn't have a scar and the next day did have a scar and was still in school, what were some of the stark differences in the way that you were treated, that you sort of instantly noticed?

- I would say it wasn't overtly being treated differently. And I don't know whether this is a cultural thing. I live in the and, we are known for our stiff British upper lip where we don't say things to people's faces, we just think them behind their backs.

- Mm-hmm.

- We've got those here in the West too, by the way. I'm in New England and in Dara's in what'd you say, Kentucky? So I think that we could nickname, we don't talk about it.

- The Semi-Kentucky's the Semi South. There's a strong similar tradition of thinking a lot of things, not saying any of them.

- There's Miranda Lambert in her song, "My Mama's Broken Heart," she has a line that says it doesn't matter what you think, it only matters how you look. And she is referring to that Southern, just suck it up, put your makeup on, go outside, don't talk about the troubles.

- Mm.

- So.

- And I've got a Glaswegian grandmother as well and they are tough.

- Yeah.

- They are, you know, she'll be saying, "Oh, I've got this ailment and this ailment and I'm, you know, I'm on death's door, but I'm fine, I'm fine, it's all good.

- Big deal.

- Tell me about your day, how are you?"

- Yeah.

- Yeah.

- That's it, so we share across the pond, we share a bit of that with you.

- So, yeah, what I will say is, I think to pick up on your point about this potentially being gendered, I think you are absolutely right and I think facial difference intersects with lots of different identities. And there is a heightened pressure for a woman to look a certain way.

- Mm-hmm.

- We are measured by our beauty and we are measured by a beauty standard that is largely unrealistic. So you are right to pick up on that. And actually, one of the first kind of enlightening moments for me was in hospital and I think I was having an eye test and the nurse who, bless her, was trying to help, she was trying to make me feel better. She could see that I was feeling vulnerable and she could see that I had this big, basically, open wound on my face. And she said, "Don't worry, like my nephew, he was in a car accident. He has a big scar on his face and he's now a model. He's so handsome," and I thought, "That's lovely. But he's a bloke, he's a guy." Like for a guy, it's rugged, it's manly, it's a badge of honor. It's very different. And I think I've now learned that it doesn't matter what your gender is, it doesn't matter what your race is. It doesn't matter how obvious your facial difference is, it's about the impact that it has on you as a person.

- Mm-hmm.

- I speak to people.

- That's a great way to see it.

- Yeah, I speak to people all the time who have something that makes them look different, that might not even be visible when they have clothes on, but the impact that that has on them as a person can be profound. And it's not necessarily about the person, it's about the world that we live in. It's about the culture that you've grown up in. It's about whether or not there is a kind of superstition attached to that facial difference. There are lots of kind of parts of the world where craniofacial conditions or albinism or other kind of facial differences are seen as a mark of the devil. They're seen as the fact that you've sinned the fact that you've used a knife during a solar eclipse and you've brought shame upon your family. It's all of those contexts around facial difference and around it being a mark of shame and a massive source of stigma, and that was my lens. My lens was only ever seeing scars in a painted, in a negative light that, again, I had to then cope with looking in the mirror and seeing an entirely different face and suddenly having to kind of feel like myself again when I just looked like this entirely different person. And I could see one side of my face that looked like me, but one side that I just tried to almost disassociate with.

- Mm.

- But that was really hard because I still wanted to be that young woman. I still wanted to wear makeup, but half my eyebrow got so back in the wrong blooming place, so I couldn't do that anymore. So it was really tricky and I think most people were lovely. There was that kind of look of pity in lots of people's eyes that drove me absolutely wild. It was more the fact that I knew what they were thinking that was stifling those conversations. I have had the odd comment and the staring is a very common experience for me and lots of other people, but it's more what is unspoken. It's like my internal dialogue when I'm trying to disarm someone in that first initial meeting to think, what is it that you are actually thinking? And then I would stumble over what my response would be and we'd have this awkward interaction where they don't know how to look. And it's those moments that are really tricky to kind of try and take a hold of.

- I guess I'll ask is, you know, you talk about like the pressure of like media perception fitting with society perception. And I know that Facing Equality International has done a certain amount of advocacy around media. Is there anything that you think is doing a good job in how it portrays any character with facial difference that you look at and you're like, "Yeah, that thing is, that thing understands what's up."

- See, this is an interesting one because I think the problem at the moment is the representation is disproportionately negative or disproportionately stereotypical. And that's where the issue lies. And I think sometimes it plays too much into that narrative of there are one of three kind of one-dimensional stories that we see. It's the outcast, it's the villain, it's the vulnerable person. When you ask whether that we see anything that is doing well, I absolutely see more and more representation of facial difference every single day. And that could be that I'm again looking at things from a very and lens, but I'm seeing more and more representation from the states as well. And that is something to really celebrate. And when there is incidental representation of someone acting and they have a facial difference and it's not the like focal point of the story, then I know that I don't really need to necessarily work anymore, I've done my job. Because at the moment, it's always, there needs to be a backstory, there needs to be a sob story as we would say. It needs to be, oh, like this person has had a really tricky life and it, I understand that and we can't shy away from the fact that having a facial difference can be tricky. It can be hard in today's society. We don't yet live in a world where people aren't bullied or discriminated against. That is not the reality but we can also tell those stories of people just living their life, of people just going about their day of people just walking down the street without needing a pat on the back for existing.

- I think that, you know, the way that you described this, it dawns on me that this is a specific within a world that generally does this. You know, whether it's, you know, your weight, your gender, your, whatever it might be, your skin color, that we... There's all sorts of things that come along with that that shouldn't, that we put along with it. I will say, I wanted to point out one thing as you were talking about that, and Gary, your, your really good question there about like, where's the media doing this, right? And as you were talking, it brought to mind a show out of Canada called "Working Moms," streams, I believe on Netflix, and the main character is a woman. And I couldn't tell you what she has. I think she has, it's something with her lip, I don't even remember what it is, but her lip is like different, we'll just say.

- Could it be like facial paralysis or something like that. A lip clef-

- It looks like... Like a clef or something would be the, just, I'm sorry if I'm getting this wrong 'cause I'm just remember I haven't seen the show in a while, but the really interesting thing that I found about that show is there is zero, zero, zero mention of it.

- Hmm.

- I think I remember one episode like a few seasons in where somebody said something or something was kind of inferred and there was an eyebrow raised. Like I can identify with that, you know, when you were, and you might put together that she was referring to the way her lip was, but it's but aside. So I just wanted to point that out in case you're looking, you know, searching, I think this shows an example of exactly what you described or hoped for, you know, and maybe it's a result of kind of the, some of the change that you, and I'm sure other people like you are starting to make out there, but none others. Like that's the only one that I would say.

- So I've just Googled this.

- Oh, did, you?

- The first thing that I, honestly, this is like, this is perfectly proving my point because what, like you say, this is great, like it this.

- Well, I mean, and I just watched the show. I haven't Googled anything either, Google is a different story.

- Yeah, I know.

- The first thing that's come up is a Daily Mail article and type the headline is, "I cannot deal with Her Lips, viewers of Netflix comedy 'Working Moms' mock its star because of her botched upper lip as someone as some complaint her distracting mouth is ruining the show for them." I mean, that is just utterly.

- So the show does it right. Let's just say that, right, maybe I'm wrong about that, but the show does in our world, does it right and the audience doesn't accept it.

- And this is where we are proactively wanting to work with the, like creative professionals with the entertainment industry because they really can lead on this stuff and they can lead from the front and they can basically, whether the public like it or not, they can take a strong view on something, and say, "We're gonna do this whether you are gonna convey or not." There was a case in the UK and I don't know whether this reached the states not that long ago, where there was a children's TV presenter who has a limb difference. So she basically doesn't have like a lower arm.

- Mm-hmm.

- And all of these parents were writing in to complain that this person was like scaring their children and I think it was the BBC, they just were like, "Huh, we're like-"

- Yeah.

- They're just like, "We're not doing that."

- Like, yeah.

- Yeah.

- I can't even imagine as like a show producer what you'd say, you'd just be like, "This is not a relevant concern. Please come back with something real to say." Like.

- Mm-hmm.

- So given all this, I think this is great. This is, I mean this like, in this just little microcosm of this organic discussion we've really illustrated like everything that you're talking about Phyllida, you know, so in Face Equality International, in the work that you do, like, like twofold, first of all, where are you seeing and how are you seeing individuals really being helped or being, you know, where the work you're doing is enable, is helping them understand, you know, their difference better and deal with their difference better. And where is it helping, you know, where do you see it? Like in the time that you've been doing this, where do you see it making sort of, and I'm sure there's small incremental societal changes, you know?

- Yeah, I'm not really, I need to be talking about the charity more. I'm plugging it more, I'm talking about myself.

- We're talking about it like the shows onto-

- Say it.

- Like a bunch of regular people, we should really get to like a podcast subject here, right?

- So- Our model is quite unique and I think it's just indicative of the point in time that we're at. And I'm sure you talk about the history of disability organizations and charities here as well, where it's very medical model focused where it's very focused on direct interventions with their community, which can be problematic, it can be great, it's indicative of people needing support, but it's very much focused on the idea of someone needing to be fixed, of the individual having some overcome. And this is a really tricky narrative overcome the challenges that are largely based around living in an ableist society. What Face Equality International does in working with organizations that are doing that vital direct intervention work is we focus on the societal stuff. We focus on making society a more equitable place where there are, where people are seen and heard, where people are no longer bullied, where there are adequate laws in place to protect people from discrimination, but also just trying to move towards that model where people are seen and heard and celebrated. And that, I know this is an oxymoron, but that facial difference is normalized. That it's just a part of humanity. And I think you can't have one without the other. You can't have just our work. You can't, but you have to have the support that people need in the here and now. But then we have the aspirational stuff, which is focused on, okay, well if the world was more inclusive then people wouldn't need so much support with their wellbeing. People wouldn't need to keep going after surgery after surgery to fit within a kind of ideal of what a face should look like. So that's, and that's I think, you know, the stuff that weighs on my mind a lot is that we are trying to really, really shift societal perceptions around facial difference. And some of them are deeply, deeply entrenched.

- Yeah, so Dara, I want you to, this is interesting, right? Because if you think about what we do, right, and, Phyllida, what we do, what our organization does is we actually, make environments that are inclusive for people with disabilities. It just happens to be websites and these digital properties. But as you were talking about kind of your mission and what you're trying to do, which is to really change the environment, not the individual. It's to say the individual doesn't need to change, it's society, right, in this case, the environment of society, it's really very parallel or at least analogous to what we're doing. We're saying, "Look, you know, a person who's got a cognitive disability or a mobility impairment or who is blind or has, is hearing issues." You need to create an environment they can operate in versus expecting them to do something. So I think that that's a really interesting correlation. And we really don't actually on the show talk a very deeply about the medical aspects of disability. We talk more about accommodation environment and stuff like that. The other thing I wanted to kind of pull out too is you used a term ableist, which we hear every once in a while pop up on this podcast, and it's not, it's probably not a really well-known term. Maybe in our circles it's better known than in some other circles. So can you do me a favor and just define ableist for us? And if you don't want do that, I'm happy to do it, but you're the one who said it, so I thought I.

- Well, this is the thing, is everybody has their own interpretation of it.

- Mm-hmm. For us, particularly as it relates to facial difference, it's about the social model of disability and thereby, the social model of ableism, which is being limited by the attitudes of others. So whether that is people being more biased. So whether that is saying, "Well, you know, I won't hire you because you look a certain way," or whether that is people overtly bullying or like, or even too much pity, you know?

- Yeah, just-

- You know.

- Like, yeah, and this is the thing is that we're not born like this. it's kind of developed through our many, many influences that can largely be quite negative that we're trying to undo.

- Right.

- Yeah.

- I was actually-

- Go ahead, Dara.

- Oh, I was actually curious about a specific, when I was looking up Face Equality International, I actually came across a specific campaign that you all were doing, that you had been doing around Halloween, had been doing a specific campaign. I'd love to hear about that more 'cause it was social media-based to like get out to people. So I'd love to hear more about that.

- Good cause, so similarly to talking about villains on screen, there is this idea that facial difference is scary, that it is a Halloween costume. So each year when Halloween comes around, many of us, myself included, will be asked whether our real faces are masks and or prosthetic makeup. And with the rise of kind of TikTok, TikTok makeup artists and online makeup artists, we're seeing more and more looks like Freddy Krueger looks, scar looks, open-wound looks, and there is an understanding that guts and gore and horror movies that is potentially scary. But someone's real face, something that actually is the lived experience of a human being is not something for others to deem scary. It is not something for others to stereotype in such a way that does cause bullying, does cause ostracization of an already kind of marginalized, hidden community. So we got together a handful of people, like a handful of activists to share their real experiences of when they've been told, you know, "Oh, well you don't need to wear a Halloween costume, or is that a mask, is that real?" So it was real, it wasn't scripted. And we put a video together to go out on TikTok to directly kind of target this community that are kind of probably unwittingly putting these Halloween-scarred makeup looks together and not realizing that actually this, there's an entire community out here that are finding this really quite hurtful. And this is not us advocating cancel culture. We don't want to have to challenge every incidence of something that is regarded as offensive because then we'll just get hit with this woke police dialogue where people aren't willing to engage in a meaningful conversation. What we are trying to do is have those conversations, is to have those constructive conversations and to not be told that we are just snowflakes, that we just need to kind of buckle up and deal with it to say that actually no, this is a real-life experience and you are causing real-life harm to a marginalized community. And let's have this learning moment, let's have this conversation and let's hear from the lived experiences of people that this is their face, this is their identity, this is actually their culture. We talk a lot more about cultural appropriation now and how you wouldn't see someone doing Blackface. You probably wouldn't see someone as often now trying to be made up to look disabled. So, it, this, that same kind of courtesy should extend to someone with a facial difference.

- Do you find that, you know, I was just thinking about this and it happens with, you know, when we look at this kind of world of disabilities, depending on the disability type, accommodations can either be sort of very binary or easy to understand, or they can be more difficult. So, you know, for example, if you're blind, you need something on your computer that reads aloud to you, that's what you need. If you're deaf, you need anything that's represented auditorily to be written. So that would be a caption or something like that. It's not a, you know, there's certainly things that people don't think of, but that accommodation is pretty straightforward. If you have a cognitive disability, it's different what one person with a cognitive disability might need is different from somebody else. So my question for you is this whole societal thing that you're talking about, and as I hear you talk about it and you talk about horror movies, you talk about how the Halloween, you talk about sort of guts and gore being on this extreme that probably makes sense and then, you know, no guts and gore on another extreme that makes sense. But then, you know, your facial scarring or somebody else's things, it starts to like find this spot in the middle where maybe it doesn't really belong. Do you find that it's really difficult sometimes to unravel like kind of what's okay or where it's okay to go down that road maybe a little bit and it kind of makes sense from, wait a minute, we're being discriminatory here because I can see that just being not the easiest thing for somebody to navigate who's trying, you know what I mean?

- Yeah, and it's tricky and what I've learned is that through not just this situation but all sorts of situations is that having the expectation that people have common sense. It's like, it's just, you're always gonna be let down.

- You know, this is the time.

- To me, it's so obvious.

- I get to say that my grandpa had a phrase where when people would do something without common sense, he would be like, "It's the human element." And that, to me, sticks in my mind when you say that.

- The tricky thing-

- I just think even trying to apply common sense sometimes in this kind of situation, here's a nuance that must be making-

- Oh, it's 100% a nuance.

- Yeah.

- And like this conscious, I don't know whether you followed this whole kind of conversation around nipples on Instagram.

- Oh, yeah.

- So when a man shows a nipple versus when a woman shows a nipple and all of.

- This i that one dialogue.

- Yeah, it is intense.

- It's all about.

- Was it, well, tell me about it, tell me about it

- Well, I mean, it should be pretty obvious. It's just the fact that women, there's this whole free-the-nipple kind of conversation.

- that I've. - gotten that

- A nipple is not nudity and that just because it's on a woman doesn't mean that it should be kind of a violation of community standards, but versus a man can just freely show a nipple. Anyway, I digress. What's really kind of insidious about this and where I think actually this is where facial difference moves more into the medical model, the kind of the impairment model and the model that I think you might be interested in this community is artificial intelligence. So, on social media, an algorithm of a machine cannot tell the difference between someone with a scar that is through trauma, through kind of illness versus a self-harm scar. A machine without the support of a moderator cannot tell the difference between someone that is just wanting to show their face and something that is actually violent or graphic or might cause harm to kind of certain viewers. So this is what we're seeing a lot at the moment is because artificial intelligence and facial recognition software has not been built with large enough data sets in terms of what is a human face. It's basically not regarding lots of people with a facial differences human.

- Hmm.

- So whether this is failing to get through passport gates or as I said, being kind of censored on social media, we've seen on a number of occasions someone goes to post a family photo. So there was a mum in the and who went to post a family photo and her son has a craniofacial condition, which means he has the one eye, this content was flagged and blurred out on Instagram marked as sensitive, violent graphic, and then her entire account was suspended. So that-

- Not even a machine.

- In itself, is a case of when something becomes a physical barrier, a physical barrier for someone with a facial difference to be able to navigate the world, so we are part of this initiative called Disability Ethical AI, and we've...

- Right.

- We had a talk recently and it was about how do you lip-read a robot? So, for instance, if someone is going into a video interview and it's with an AI kind of bot, they are then being judged on the tone of their voice. They are then being judged on their appearance, whether their facial expressions as well. And that is all being fed into a machine that is basically saying whether a person is a hireable candidate or not.

- Mm.

- And there is no accommodation for that. Basically, you might be completely disregarded. There's no, and there's no kind of recourse. You don't know perhaps why you've been scored very lowly at like very low by this kind of AI software for an interview, but it's because your face perhaps doesn't move the way that a normative face does. So artificial intelligence is perhaps where we are gonna see a growing, I guess, insidious kind of movement where people with facial differences are gonna be, continue to be disadvantaged because our faces do not fit within the perception of what a machine regards as a human face.

- Is there, are there statistics out there on people with, you know, facial differences like that not being hired as often or?

- Yeah, and there's growing research and commentary around this. So there was an infamous case at Google a number of years ago, that I think it was a developer that actually was kind of pushed out of Google because she raised the fact that their facial recognition software was racist. So it was grouping in Google photos, it was grouping a bunch of Black people into an album called "Gorillaz," I think.

- I remember when I heard about this and I remember it was a huge scandal when that hit the news. And, yeah.

- So it's... There are parallels, of course, and our kind of non-technical understanding is that it's about data sets and it's about what an algorithm sees as a face and, but there isn't masses of data. There was a report by the World Bank and not that long ago, which recorded several cases of people with albinism or down syndrome where they were being denied a photo ID card because facial recognition software was not seeing their face face as a human face.

- Wow.

- So we have lots of kind of anecdotal stories that we're trying to compile at the moment. We fed into a United Nations convention on the rights of persons with disabilities kind of thematic report on this issue. And it's something that we're trying to kind of maintain an active dialogue on because it is particularly pertinent with this facial recognition software aspect, kind of, this is where it kind of parallels with your work because it's about creating those environments where people can have access.

- Mm.

- So it's kind of like you're building up on this issue, you're kind of built, you're in that stage of research basically, when you're going from anecdotes to data and like kind of that transitional period. I like research, my dad is a researcher where things go from things being observed to things being checked with data, but it's, that's always a weird period because you have, you know so much, but it's not categorized yet. It's like, yeah.

- We know so much. And naturally, the kind of the AI space knows it too. The social media platforms know it too, but there's all of this red tape around, okay, well what is actually gonna be doing done about it and how can we help? And we like I said previously around the entertainment industry, we are here, come and talk to us, come and involve the community in the solutions that, you know, need to be developed, but it's not yet really happening.

- Mm, so it's like the dialogue hasn't started yet, so that kind of means things are stalled out because you can't go places without talking to the people who do things. Basically.

- Yeah, and it's tricky to en engage in a dialogue, again, we don't want to advocate cancel culture, we don't want to necessarily have to stage this big scandal. Well, it's not stage, it's exposes a scandal. It's real, we're not having to stage anything.

- But it's kinda like you'd rather talk about it versus have it be a scandal you'd rather talk about before it becomes a big thing in the news. You'd wanna just talk about it person-to-person. Yeah.

- Well, my... My previous experience is just that I don't want to feed into this narrative around particularly like social justice organizations that just want to call stuff out, just want to shout about something that I wanna be part of a solution. I wanna recognize that this might not have been an intentionally discriminatory practice. It's just the way that things are developed and like you say about that inherently kind of ableist with like trying to undo history and this is following in the footsteps of that and we wanna work together to prevent it.

- Do you hear from people that have, you know, you've helped that you've changed their lives ever?

- Yeah. The thing is we don't do direct kind of individual-level work. We hear from people all the time that are appreciative of what we're doing.

- Mm-hmm.

- Absolutely, and we've got this lovely little community that we're developing on social media.

- So what about the reverse of that? Like you said, "Hey, you know, Hollywood, we're here, talk to us." Do you ever have somebody? Have you had somebody reach out and say, "Hey, we're trying to do this better, can you help us along?"

- Yeah, for sure. I did a talk this morning with a big kind of media company. So more and more like, I'm more like PR and advertising those sorts of things. And when it comes to conversations and running webinars and like lunchtime chats about diversity, equity, and inclusion and how this extends to people with facial differences. Absolutely, like that's happening more and more. And we wanna kind of go about that in a kind of two-pronged approach. So where we sit legally within the disability space, we wanna be coming together with disability organizations and strength in numbers and there is solidarity there. But at the same time, there are some very specific experiences that we wanna draw out that do require that tailored specialist approach, that recognizes that this is a unique human experience that should be validated on its own.

- So you're kind of working between, like you're part, it's like you're under the umbrella, but your own thing under the umbrella so that it can be interesting to navigate between being part of the group and the individualness.

- Yeah, we shoot ourselves in the foot a lot, probably.

- Well, and I wanted to ask, you know, I know we're nearing the end of our time, but I was very curious to hear, you know, because speaking of umbrellas, because your organization is kind of an umbrella organization for multiple smaller things, I was curious to, I know you have stuff that's outside Britain, outside the US. How's that been connecting sort of across countries in a different way, you know, what's that been like as an organization?

- Yeah, well I think as I've touched upon, I'm trying to really understand the parallels that we have, I mean the human experience of facial difference is universally challenging and that's what it's about. It's like finding that common ground and there will be really differing opinions, differing language, kind of some divisive, tricky conversations. But largely we all want the same thing. That being said, we are still a relatively new organization. We only formed in 2018 and with the UK-based founder. So we were set up by a burn survivor called Dr. James OBE is his, that James Partridge OBE is his official title. So he had that and connection, he had another, and not-for-profit that he set up and he built all of these connections around the world. So we've been quite YK-US centric up until more recently when we've realized, "Okay, well this is a global issue." And looking at this through this quote-unquote "Western lens" is not the most effective way to serve a global community. And this is, I think it's inherent in the way that we approach kind of international development and public kind of global health as well, is looking at it through the lens of West is best when it's actually not the case. It is very much a sense of needing to understand the global challenges, the way that culture plays a part in facial difference and the perception of people with facial differences. And actually, there are parts of the world where it's a hell of a lot easier to live with a facial difference because like I said, there isn't such a pressure to look a certain way. There isn't such a prevalence of social media or there isn't such a plastic surgery culture. So actually, it doesn't, it just, it can be a lot easier around the world. It can also be a lot harder. We see the most extreme human rights violations in low and middle-income countries where access to basic healthcare is very limited. But also where there are a lot of superstitions around facial difference and where it comes from.

- We to wrap. We need to wrap up. We're right at the end here. So, and this is, to me, has just been an unbelievably, we learned so much on this podcast and-

- We really do.

- Listen to you talk.

- I always go and tell my family about stuff later.

- So I wanna thank you first and foremost for just, I mean, I think Dara and I pretty much just sat here and listened to you talk because one, you have a wonderful way about you, but two, which is, it's just really fascinating and not something that in our line of business, it's not, you know, not focus what we pay attention to. So we really appreciate you coming in and sharing and clearly, you're, you know, you've overcome a lot yourself and are very confident and have leaned into this to the point where you're, you know, trying to help the world basically. So it's all absolutely wonderful. But as we wrap up here very quickly, is there any last thing that you, we didn't cover, you wanna reemphasize before I officially sign off?

- I think just reinforcing that point that we want to have a stake in the disability rights movement. We want to have a stake in disability spaces and find that common ground and we're often overlooked. So please, come and talk to us, we're here. Like we're...

- That's the message, come and talk to us.

- Yeah.

- We're here.

- Yeah, come and talk to us, we're here. Come follow us on social media, Face Equality International, like we're very friendly.

- And we'll put all of that in the notes for everyone. Yeah, we always have links. Yeah, we'll reach out to you later about getting our links packet prepared.

- Perfect.

- Alright, well, this is Mark Miller thanking Phyllida and Dara, and reminding you all to keep it accessible.

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