AXSChat Podcast

AXSChat Podcast with Phyllida Swift, activist and CEO of Face Equality International

November 26, 2021 Antonio Santos, Debra Ruh, Neil Milliken
AXSChat Podcast
AXSChat Podcast with Phyllida Swift, activist and CEO of Face Equality International
Show Notes Transcript

Phyllida is an appearance activist and CEO of Face Equality International. After sustaining life-changing facial scars in a car accident in 2015, she set out to reshape the negative narratives that dictate the public perception of scars and facial differences. She is a passionate face equality campaigner, aiming to gather momentum for the equity and inclusion of the facial difference community. She is a TEDX speaker, occasional artist, and a model with Zebedee Management.

Neil Milliken  0:02  
Hello, and welcome to axschat. This week, we're delighted to be joined by Phyllida Swift who is the CEO of Face Equality International. It's the second time that we've welcomed that face of quality International to access chat we previously welcome James Partridge on and sadly James's died last year, big loss to the community. But But Senator is filling his shoes. And so I'm really delighted that we could welcome you today to talk about the topic again, because it's a super important topic. And so tell us a bit more about what you're doing, how you came to be in the role. And you've raised some topics really recently around one of the big media events. So there's a lot to talk about. So welcome, Phyllida. Thank you for being with us.

Phyllida Swift  0:59  
Thank you so much for having me.

Neil Milliken  1:02  
So, first off, tell us how you came to be working in this this field of advocacy.

Phyllida Swift  1:10  
And yeah, sure. So you've mentioned James, who is just an incredible human being to have crossed paths with in life. And I say all of the time that it's a worthy shadow to be living in now that I've kind of taken over the reins of face quality International. But we had worked together for a while both through Changing Faces UK, which is the charity that he sets up in 1992. And we started working together. And I'd say 2017, when the first ever face Equality Day, was launched in the UK. And before that, I had been working in campaigns for Changing Faces. And my first entry into this space was actually after I was in a car accident in 2015. And I came out with a whole host of different injuries. But the most significant one was a laceration to the front of my face, I came out of that accident, with significant scarring. And similarly to James that was at a young age, I was 22, I was at university, I was a young woman who did the average thing that every other young woman does, wear makeup lights get dressed up, be susceptible to a certain beauty ideal. And so all of a sudden, having something stamped across my face that is largely seen in society as ugly or the mark of a villain, never something that someone would want to have, particularly as a young woman. And I went in search of organizations, support groups, someone who would understand what this was like what I was going through this readjustment to my new face, and I found Changing Faces and I reached out. And to this day, I feel so privileged to live somewhere where that resource where that group where that community existed. And I haven't looked back I got involved, I have met some incredible people who we can really kind of connect on a level. And I started out as a media volunteer for that organization had some slightly questionable experiences, sharing my story in the in the press and in tabloids and then sensationalizing it all and that led me to want to stay involved in the campaign, but take a bit of a backseat. And that led me to get involved at changing faces where I worked on things like that I am not your villain campaign and also on a campaign to counteract hate hate crime, which was funded by the home office. And then the moment I tried to leave, I got poached by James Partridge to come and work for physicality International. And we all thought that after he left changing faces in 2017, that he was going to go and retire and settle down a little bit. But that's just not who James was. So he wanted to take the mission. Global he wanted to take the face of quality campaign across the world recognizing that wherever someone might be in the world, living with a disfigurement comes with a great deal of stigma, a great deal of prejudice, a great inequality of access to education. Health care. And we have since built a membership of 36 organizations around the world. And together, we campaign to counteract the discrimination that people experience and to enable people to live the life they choose. So that's a slightly long winded, Whistlestop. Tours, face to quality International.

Neil Milliken  5:38  
Well done amateur amateur hour here. So there's a lot to unpack there. That's a fantastic summary. Obviously, the stuff about the media is an ongoing concern. But I'm really interested in the coalition that James and yourself have built. And also, maybe you could tell us a little bit more about, you mentioned how facial disfigurement is impacting people's access to health care. Now, that's probably not something that people are really aware about. Can you tell us a little bit more about why that happens?

Phyllida Swift  6:20  
Yeah, so it's an area that is across the board. disfigurement is an area that is massive, massive, massively, massively neglected and under researched. There is, however, more and more studies coming out that talk about how the level of stigma attached to disfigurements similarly to disability, particularly in parts of the world where the moral model still exists. So perhaps this disfigurement being a mark of sin, a mark of the devil, and that means that people are so overcome by shame that they will not come forward and access vital health care. There's a study going on at the moment, at the Center for parents research, which is based out of the University of the West of England, in Bristol, and they're doing a study about the Somali community, and how Somali culture impact the way that people will access, support or surgical intervention will come forward and be willing to talk about disfigurement or access health care. And so it's an area that is really, really under under research. But it's not to say that this is just something experienced in the majority world is actually happening right here in the UK, we know that stigma and shame and wanting to access perhaps psychosocial support around disfigurement, we know that women are likely to come forward and talk about this stuff. And then less likely to want to access support or access things like skin camouflage, if there's a condition that can be covered by skin camouflage, and, and also just less likely to come forward for surgical interventions and those sorts of services as well.

Neil Milliken  8:37  
Okay. So that that whole sort of societal model of sin and and maybe even having done stuff in a past life, and being impacted by that, I fully understand. I know, Antonio has got a question. So I'm gonna hand over to him but I was I'm still was I understand that I'm still shocked by just how much

Phyllida Swift  9:08  
and that moral model is not to say that it's necessarily tied to religion, actually, in the UK, we say things all of the time, like, everything happens for a reason, or we are kind of that bit more spiritually leave kind of open. And I know that in Christianity, we hear times, like, God only gives us what we can handle. Not to say that that is something that I associate with or that I'm religious in any way but it's something that has become more kind of secular and more ingrained in society is everything happens for a reason. And the shame that comes from that and the sense that okay, well, what have I done to make me deserving of this? Why is it me that's having to put up with this and also that goes into the societal view is of the individual as well. And say, it's not necessarily just about religion, it's it's actually across all society.

Antonio Vieira  10:15  
In terms of advocacy in in and communication, what type of challenges you still have when when doing advocacy and communicating, for example, in social media, because I'm sure some of the stigmas will be very present in the channels as well.

Phyllida Swift  10:35  
Social Media for people with disfigurements right now is really, really problematic. In fact, there's a case going on, at this very moment where on Twitter, a member of our community who has a cranial facial condition, so a condition that they were born with that affects their facial appearance, they've had their photo, selfie blurred out by Twitter, and marked as sensitive content. And again, I know that this happens with people with disabilities and with disfigurements. And whether it's an algorithm or a moderator or human, blurring someone's face out and marking it as sensitive and censoring the community in this way. It highlights the dangers and the potential harms of artificial intelligence algorithms and how they disproportionately impact upon people with disfigurements. And understandably, there are methods in place to prevent people from being able to search things like self harm, because there are kind of darker areas of the internet. But that has meant that also entire accounts that are devoted to celebrating things like scars have been removed, and have been raised. And in doing that, it raises the experiences and the vital community that we desperately need. And it just is another example of being told that people's experiences are invalid, and that we're not worthy of being able to access something like social media in the same way. So social media is difficult. And there's also a lot of hate, there's a lot of difficult reasons why a lot of our community members will choose not to have their photos on their social profiles, for fear of being abused, or for fear of actually having the photos taken and used as memes to perhaps mock or even to incite hatred. There's a case right now of someone having had a video, they contributed to for a really positive advocacy, kind of awareness raising story. And it's being used completely out of context. And they've taken this person's story. And basically made it up made up some narrative around it to say, and actually used another person, as like a before and after. And this is the person with the birthmark on their face. And they've pulled in this other video of this other human made out like she's had this transformation. So that's been a massive violation of someone. And we see the same levels of kind of inspiration porn and all of the other wonderful things that people with disabilities have to put up with online and shouldn't have to put up with online and the responsibility of the social platforms to have to handle this stuff. This is just not where it should be. And so yeah, it's a it's it's a really tricky space to be

Antonio Vieira  14:12  
I think, there's something that no, I'm I really need to I have to ask you after. After your comment, answer. How you are dealing with with taking care of the mental health of those individuals, what is being done, how, you know, how the community is able to come together, to support each other, Offline? What has been done there just to take care of people just for them not Don't, don't feel this desencouradge?

Phyllida Swift  14:44  
Yeah, so there are again, as an international organization, we are relying upon our members wherever they might be in the world and they are doing that support. And they are doing that psychosocial support. They're running peer support there. During the whole works, and they are doing an incredible job of that. And that being said, we know that there are significant proportions of the world where there is just nothing. And again, just to reiterate how privileged I felt to be able to have a service a community to access. And there may well be an organization that delivers surgical intervention, perhaps, but that doesn't mean to say that they have any provision for wellbeing needs. And that doesn't matter where someone is in the world. And the addressing the psychosocial needs of this community and integrating that into existing health care is a massive, massive gap. And it's something that I've written about very recently for a medical journal, is the lack of understanding from healthcare professionals as to someone's needs. And even within developed healthcare systems, again, just the the lack of integration of effective care. James Partridge, again, our founder did an incredible job in the UK of as a band survivor of ensuring that burn care and burn rehabilitation fully built in wellbeing, and psychosocial support. But there's still a really, really long way to go. And this again, is across the world doesn't matter where is.

Neil Milliken  16:39  
So I was also reading articles this week, as a slightly different tangent, but that is definitely related were medical professionals who are experiencing long COVID are suddenly realizing how lacking in empathy the medical profession is, and how they they are finding that even their colleagues are not believing them, even though they are part of the medical profession. So so. So maybe there will be a shift in the long term, should they regain enough energy to return to work to be able to, to change the mindset to believe people when they tell them that there is a an impact or they are affected? Because because this was something that that was being reported, and quite frequently, it was skewed towards women being disbelieved rather than the men. That's not not a great surprise, but it is a great shame. So, so that's one thing. And I also think that just generally, we don't think about the mental health impacts of long term illness, and that the models around disability that we conceptualize, haven't taken that sort of duality into account. So you mentioned sort of bio psychosocial. And that's, that's kind of the model that we're, we're trying to apply within our own organization. So because it's more holistic, and it has more of a crossover. So do all of the organizations that you work with, apply similar things? Or is that part of the role of face ecology International to try and bring that sort of theoretical models and thinking and conceptualization to them?

Phyllida Swift  18:41  
So our role primarily is to be a capacity builder for these organizations to have a stake in the face equality campaign. So recognizing the big long term vision of creating a society that respects difference, and that is free of stigma and prejudice. And we understand that a lot of the direct intervention that is needed with these individuals with disfigurements is as a result of lack of awareness and ignorance and just pour societal attitudes. So we're all about that big, long term focus counteracting stigma rather than us being responsible for that direct intervention. However, we were appropriate we'll build our coalition on the basis that we can facilitate our member organizations to learn from each other because there is a lot of expertise across this very niche area that so often is quite siloed and doesn't necessarily get shared. So granted cultural nuances and differences are not to be disregarded. However, largely the experiences and the interventions require required interventions required. There's a lot of learning that can go on across our membership. And we facilitate that via, we just had our annual conference, and they have the ability to network and learn from each other and hopefully not have to reinvent the wheel, because we are all lastly working towards the same thing. And there's some brilliant resources that have been developed. One of them that's here in the UK is a self guided cognitive behavioral therapy tool for people with facial differences. And that's both available for adults and for young people. And we run a session with our members on okay, how is this? well researched? Because it came out of a university? Could this be a tool that actually is taken and and adapted for each of our member organizations? And how can we facilitate that? So we, we do that capacity building and that community building in the hope that we can be stronger together?

Neil Milliken  21:18  
So another question. So you mentioned the challenge of social media. So thank you for stepping up and coming in joining us because we know that you've just mentioned it's challenging. So some of it is how people react. But some of it is also algorithmic bias, right? So there's this innate bias because people, people have made these assumptions and they've taken their biases into the creation of the filters and the mechanisms. So how have any of the social media platforms engaged with you to try and address this?

Phyllida Swift  22:06  
So we, we are currently in the process of trying to reach Twitter, with this blurred out marked sensitive content. And we're allowing that opportunity to work collaboratively with Twitter because we know that it's really important to ensure that the experiences of our community are built into the way that the platform is more like moderated and just pointing the finger and not offering any opportunity to really influence the way that it's run is not going to work. And the same goes for earlier on in the summer. There was a horrendous trend that kicked off on tick tock that was referring to one of our ambassadors a guy called Johnny Lancaster who has teacher Collins syndrome. And, and he was involved in a trend where someone had stolen his photo and it was attached to some really awful dehumanizing language, he was being referred to as subhuman. And that trend was allowed to reach millions and millions of people on Tik Tok without being dealt with. And, again, we knew that they that yes, we could call Twitter out and we were successful in gathering kind of a reaction and some momentum when we were calling this stuff out. But we are now in the process of figuring out how we can work collaboratively with tick tock and other platforms because it's very clear when language is ableist or racist, or at least more clear than it is language that's offensive around disfigurements. So calling someone ugly, for example, when it's not someone with its disfigurement, taken out of context and might not be flagged, and the sorts of language like Monster and all sorts of horrendous kind of examples of language that might not be flagged up because they're just not seen as outright discriminatory towards people with segments. And also just in terms of reporting as well. I think things have progressed a little bit. But I know that in the past, when you report something that's hateful content, or discriminatory, there might be a tick box to say which protected characteristic it violates or which protected characteristic it's kind of offending and disfigurement isn't one of those. So it's really, really problematic and that social media is an incredible thing in terms of building communities and it's so vital, particularly throughout the pandemic and with people who perhaps I've never met someone with the same condition or the same experience. However, it's also built to it, you know, it's built on systems that are really, really disproportionately affecting people with disfigurements and disabilities.

Neil Milliken  25:23  
And kind of did you want to follow up?

Antonio Vieira  25:25  
No, I was I wanted to follow up on the on the previous on the previous topic, now but in  relation to social media, I feel that sometimes people are doing the moderation, they are not trained, or going to programs that would allow them to understand the different cultural nuances of social media and the different communities around the world. And sometimes the things get into their desk or to their computers, and they don't really know what to do with it, or they don't really understand it. So, and you might end up in a conversation with them. But no, the knowledge is not there. So I think it's very challenging.

Phyllida Swift  26:11  
And what's a massive kind of what adds insult to injury, pun, perhaps intended, is when someone does report something when someone, you know, says, Okay, this is not okay, I'm going to feel empowered, and I'm going to do something about this, to then be told that something doesn't breach community guidelines, is really difficult to have to deal with. So this experience, which is completely violated and dehumanize me, clearly is not a violation of whatever platform this is that community guidelines. That's just awful.

Neil Milliken  26:51  
Yeah, it compounds the the pain of the the original insult so gosh, there's there's a lot here we we we do understand the difficulties that social media can bring bullying, they you try and bring positivity through community. So hopefully, you'll find our little corner of social media is going to be really positive. We're looking forward to you. Joining us for that. One last thing our you were talking about. imagery in the media. And we know we talked with James previously about the portrayal of villains the Bond movie recently, you know, again, repeated the same trope. How can we get people that are producing movies to be a little bit more imaginative about how we portray violence?

Phyllida Swift  27:55  
So this this issue is twofold? Because yes, it is demonizing vilifying an entire community. And I think the the response, we always get always like, Oh, it's just a film, it's not real people can tell the difference between real life and make believe. And that's absolutely not the case. I think it's so insidious. It's so underlying and when representation of disfigurement is so minimal as it is when the only time you see someone with a scar on screen. And I'm not to say that there aren't any positive examples, there are a handful. But nine times out of 10. It is a Bond villain, it is someone to fear someone not to trust and someone to be scared of. And when it's what's really heartbreaking to me personally, as when I see this in films and TV and books that are geared towards children, it's kind of like okay, what are they going to think when they first meet me? Are they going to be scared of me? And I've had people say, like, I've had when I've gone into schools, I've had young kids say, your face is scary, and I don't like it and that just hurts. So why why are responsible filmmakers who have all of these creative devices at their hands and should be truly creative? Why are they using this lazy old trope that is just one unnecessary and to really, really harmful to an entire community and the other prongs of this which has so many parallels with other equality issues, but in particular, disability is the fact that people with this actual experience are not getting the role. So they will bring in an actor and have them made up with prosthetics. So in wonder, for example, in the latest Bond film and What was really pleasing to see this past week was Eddie Redmayne was apologizing for when he played a trans woman in a film. And he was saying that it was a mistake. But I don't know whether he's yet acknowledged or apologized for playing Stephen Hawking. And again, taking that opportunity from someone within a marginalized, overlooked community. So it's really interesting. And there's a lot to do in this space. And we will continue to have people tell us that we are snowflakes, and that we need to just appreciate these films, and particularly when these films are so beloved, and so famous, people get really defensive when we try to call them out. And we're not trying to cancel these films or these actors. We're just trying to work collaboratively to be better, and to influence things so that people have opportunities, but also so that we're not telling future generations again, to fear difference to not trust difference and to see these people as less than because the effects this does last for generations, these films will be around for a long time. And we just need to stop.

Antonio Vieira  31:20  
Yes. You touched the point of children initially. And we had previous conversations on the topic, and one our axschat members was telling was telling us that, sometimes children's they approached me. They have questions about myself, but the parents say, Oh, just don't go there. And then and I have to engage with the parents say no, it's fine. No, it's fine. Let them let them let him come in. So this kind of the it's very, very present in society. And the the movies to children are particularly worrying, those movies that target kid children. Yeah.

Antonio Vieira  32:02  
Yeah, I think you hit on something really important there as well. And something that we try to actively talk about is the importance of kind of nurturing that, in inquisitiveness, that like that honest, like, pure child, like, oh, like what happened to you or mommy, mommy, that that person that's different. And that's completely natural. But if you shut that down, apparently, like drags you away, then it just completely tells that child that there's something wrong and completely stifles that opportunity to build a human connection and to learn and to see that person is equal. We hear about that all of the time. And sometimes young people are a lot easier to influence than adults. And I think it's the adults that have been exposed to all of this biased media representation. And we're all about shame free, open conversations. Come in, we're not going to cancel you. We're not going to call you out for stumbling over the right terminology, because things are constantly evolving. But it's yeah, it's just about hopefully, moving forward and building this culture where we want to be better and we want to be more respectful of each other as human beings. Like is that too much to ask?

Neil Milliken  33:26  
No, it's not. No, it's not. I think we should all be able to explain that. So we've reached the end of our time, it's it's gone too fast. I'm really looking forward to you joining us on Twitter on Tuesday. Need to thank Barclays Access, My Clear Text and Microlink for helping keep us on air and lights on and as captioned. So, thank you very much for the do it's been a real pleasure.

Phyllida Swift  33:55  
Thank you so much. I'm really looking forward to

By Antonio Vieira Santos