October 5, 2023 • 47 mins
Mark Miller, host, and Dara Golding, co-host, speak with Phyllida Swift about her life experiences, being a CEO, and her appearance and social justice activism. Learn about:
- Face Equality International.
- Her advocacy for the facial difference community.
- Her efforts to change stigmas and stereotypes around facial differences.
- Her history working in the face equality space.
- How she is making global connections through her work.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
- [Announcer] Welcometo TPGi's Real People,
Real Stories podcast, whereyou'll find interesting
and diverse stories fromfolks working to make
the world a more inclusive place.
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- Hey, welcome to RealPeople, Real Stories podcast,
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I am your host, Mark Miller,
(00:21):
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Hey, even link to it fromyour accessible website.
Welcome, everybody, thanksagain for joining us.
I want to jump right in, and first of all,
welcome once again to theshow our producer, Dara.
(00:43):
It's wonderful to have youshowing up as a regular
and jump right in with our guest Phyllida.
Did I do good on the name?- Yeah, you did good. (laughs)
- Yes, as I practiced beforehand.
I practiced beforehand so,
and so I wanna kind of diveright into your story here.
(01:04):
And you know, I understand that you're
the Chief Executive Officerof a company and that,
in that company kind of involves
all sorts of different organizations.
Can you tell us a little bitabout what you are, about,
what that's about, and maybe alittle bit how it came about?
- Of course, yes, so hello,yes, I'm Phyllida Swift.
(01:27):
Yeah, I am the Chief Exec
of a charity called FaceEquality International.
So we are a membership first and foremost
of other charities, other not-for-profits
other support groups.
Our focus is thefacial-difference community.
So what does that mean?
Sometimes you hear terms likedisfigurement like deformity.
(01:50):
We tend to kind of varythe 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, itcould be acquired or episodic.
So that includes things likea cranial facial condition,
(02:11):
a clef lip and palate is very common.
Trauma and illness can be
some of the kind ofacquired facial differences.
And then episodic facialdifferences like skin conditions
that can come and go.
Me, myself, I have facial scarring
and that is where myinterest in this space comes.
(02:32):
So in 2015, I was in a car accident.
I was 22 years old and I wassupposed to be volunteering
in Ghana and we were driving overnight,
was supposed to be goingaway for the weekend.
We were a bunch of volunteers driving
around this horrible road
(02:56):
where the drivers thereare just absolute maniacs.
And we were driving overnightand our driver tried
to overtake and basically,the whole side of the van
that I was on justcrumbled in and that was
where my face was.
So I came out with a wholehost of different injuries.
Everybody in the van survived,
(03:21):
but came out, as I said,
lots of different injuriesand lots of broken bones
and lots of time spent in hospital there.
So I spent about a weekin hospital in Ghana,
and then about a week inhospital back here in the UK
where I'm from, which mademe appreciate the NHS here
and the healthcare that we have.
- Yes.- That's too,
(03:44):
the first kind of thingI remember is waking up
in a van with, and just touching my face
and feeling it cut open.
And then I remember kind ofwaking up again on a road
and then waking up againwhere they were flinging me
on a waiting room table andsewing me up there and then.
(04:04):
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 thatyou speak to can attest
to ongoing medicaltreatment, spending time in
and out hospitals, spendingtime recovering, that is a lot.
(04:29):
But for me, it was the factthat I now had a big old scar
on my face.- Mm.
- Like the scar on my face runsfrom the top of my head down
to the bottom of my cheek.
And where I didn't havethe best surgical care
in that immediate aftermath,it's not very kind of aligned.
It's not as, I guess, aestheticas it could possibly be,
(04:53):
had I had top plasticsurgeons at my disposal,
and nor have I gone back
for lots of scar revision surgeries.
So I was now this 22-year-oldgirl in university
now associated with thisthing that I know society sees
(05:14):
as largely ugly, largelythe mark of a villain,
of a bond villain ofsomeone not to be trusted,
someone immoral, or someone vulnerable.
Every time you see someonewith a facial scar on screen
in the media, they are thevillain, they are the bad person,
they are not to be trusted.
(05:34):
And you know what, thatjust really drove me wild.
And that was kind of the first thing,
the first spark that waslit within me to say,
"Well, actually, no,
there's something thatcan be done about that.
I wanted to reshape the narrative
that dictates our perception of scars.
(05:55):
And I wanted to prove people wrong.
I wanted to prove to peoplethat scars are something
to celebrate and that Ican still feel confident,
I can still feel beautifulwith a scar on my face.
And, yeah, that's the verylong and short. (laughs)
- Thank you for that.
And I know it's notalways easy probably in,
and people are probably asking you
(06:16):
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 thatas you were talking, you know,
in, and also in the way that you laid out
(06:37):
sort of the different wayssomebody could come up
with something that's not, you know,
that's different in their face.
What really strikes me as oneis that you were a young woman
when this happened, and everythingyou said about scarring,
I feel like is sort oftimes two or times 10
for a young girl versus a guy, you know,
(07:00):
because I think that thosethings can be true as well
for a guy, but it also mightbe tough or it might be,
you know, it might inenhance some of those,
what we consider to bepositive masculine traits.
And the fact that this happenedto you at 20 years old means
that you spent quite a bit of your life
without the scarring, andthen, or moving on with it.
(07:23):
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 ascar and was still in school,
what were some of the starkdifferences in the way
that you were treated, thatyou sort of instantly noticed?
- I would say it wasn't overtlybeing treated differently.
(07:45):
And I don't know whetherthis is a cultural thing.
I live in the and, we are known
for our stiff British upperlip where we don't say things
to people's faces, we justthink them behind their backs.
- Mm-hmm.
- We've got those here inthe West too, by the way.
I'm in New England and in Dara's in
(08:06):
what'd you say, Kentucky?
So I think that we couldnickname, 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. (laughs)
- There's Miranda Lambert in her song,
"My Mama's Broken Heart," she has a line
that says it doesn'tmatter what you think,
(08:28):
it only matters how you look.
And she is referring to that Southern,
just suck it up, put yourmakeup on, go outside,
don't talk about the troubles.
- Mm.- So.
- And I've got a Glaswegiangrandmother as well
and they are tough.
- Yeah.- They are, you know,
(08:49):
she'll be saying, "Oh,I've got this ailment
and this ailment and I'm, youknow, I'm on death's door,
but I'm fine, I'm fine, it's all good.
- Big deal. (laughs)- Tell me about your day,
how are you?"
- Yeah. (laughs)- Yeah.
- That's it, so we share across the pond,
we share a bit of that with you.
- (laughs) So, yeah, what Iwill say is, I think to pick up
on your point about thispotentially being gendered,
(09:09):
I think you are absolutely right
and I think facial difference intersects
with lots of different identities.
And there is a heightenedpressure for a woman
to look a certain way.- Mm-hmm.
- We are measured by ourbeauty and we are measured
by a beauty standard thatis largely unrealistic.
(09:31):
So you are right to pick up on that.
And actually, one of the firstkind of enlightening moments
for me was in hospital and Ithink I was having an eye test
and the nurse who, blessher, was trying to help,
she was trying to make me feel better.
She could see that Iwas feeling vulnerable
(09:52):
and she could see that Ihad this big, basically,
open wound on my face.
And she said, "Don'tworry, like my nephew,
he was in a car accident.
He has a big scar on hisface and he's now a model.
He's so handsome," and Ithought, "That's lovely.
But he's a bloke, he's a guy."
Like for a guy, it's rugged, it's manly,
(10:14):
it's a badge of honor.
It's very different.
And I think I've now learned
that it doesn't matterwhat your gender is,
it doesn't matter what your race is.
It doesn't matter how obviousyour facial difference is,
it's about the impact thatit has on you as a person.
- Mm-hmm.- I speak to people.
- That's a great way to see it.
(10:35):
- Yeah, I speak to people allthe time who have something
that makes them look different,
that might not even be visiblewhen 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 culturethat you've grown up in.
(10:57):
It's about whether or not there is a
kind of superstition attachedto that facial difference.
There are lots of kindof parts of the world
where craniofacial conditionsor albinism or other
kind of facial differences areseen as a mark of the devil.
They're seen as the factthat you've sinned the fact
(11:18):
that you've used a knifeduring a solar eclipse
and you've brought shame upon your family.
It's all of those contextsaround facial difference
and around it being a markof shame and a massive
source of stigma, and that was my lens.
My lens was only everseeing scars in a painted,
in a negative light that, again,
(11:42):
I had to then cope with lookingin the mirror and seeing
an entirely differentface and suddenly having
to kind of feel like myselfagain when I just looked
like this entirely different person.
And I could see one side ofmy face that looked like me,
but one side that I just triedto almost disassociate with.
(12:03):
- Mm.
- But that was really hardbecause 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. (chuckles)
So it was really tricky and Ithink most people were lovely.
There was that kind of look ofpity in lots of people's eyes
(12:24):
that drove me absolutely wild.
It was more the fact that Iknew what they were thinking
that was stifling those conversations.
I have had the odd comment
and the staring is a verycommon experience for me
and lots of other people, butit's more what is unspoken.
(12:45):
It's like my internaldialogue when I'm trying
to disarm someone in thatfirst initial meeting to think,
what is it that you are actually thinking?
And then I would stumble overwhat my response would be
and we'd have this awkward interaction
where they don't know how to look.
And it's those momentsthat are really tricky
to kind of try and take a hold of.
(13:09):
- I guess I'll ask is, youknow, you talk about like
the pressure of likemedia perception fitting
with society perception.
And I know that FacingEquality International has done
a certain amount of advocacy around media.
Is there anything that youthink is doing a good job
in how it portrays any character
(13:31):
with facial difference thatyou look at and you're like,
"Yeah, that thing is, thatthing understands what's up."
- See, this is an interesting one
because I think theproblem at the moment is
the representation isdisproportionately negative
or disproportionately stereotypical.
And that's where the issue lies.
(13:53):
And I think sometimes it plays too much
into that narrative ofthere are one of three
kind of one-dimensionalstories 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
(14:14):
more and more representation
of facial difference every single day.
And that could be that I'magain looking at things
from a very and lens, but I'm seeing
more and more representationfrom the states as well.
And that is something to really celebrate.
And when there isincidental representation
of someone acting and theyhave a facial difference
(14:36):
and it's not the likefocal point of the story,
then I know that I don't really need
to necessarily workanymore, I've done my job.
Because at the moment, it's always,
there needs to be a backstory,
there needs to be a sobstory as we would say.
It needs to be, oh, likethis person has had a
really tricky life andit, I understand that
(14:58):
and we can't shy away from the fact
that having a facialdifference can be tricky.
It can be hard in today's society.
We don't yet live in a worldwhere people aren't bullied
or discriminated against.
That is not the reality butwe can also tell those stories
of people just livingtheir life, of people
just going about their dayof people just walking down
(15:20):
the street without needing apat on the back for existing.
- I think that, you know, theway that you described this,
it dawns on me that this isa specific within a world
that generally does this.
You know, whether it's, youknow, your weight, your gender,
your, whatever it might be,your skin color, that we...
(15:43):
There's all sorts of thingsthat come along with that
that shouldn't, that we put along with it.
I will say, I wantedto point out one thing
as you were talking aboutthat, and Gary, your,
your really good questionthere about like,
where's the media doing this, right?
And as you were talking, itbrought to mind a show out
of Canada called "Working Moms," streams,
(16:05):
I believe on Netflix, and themain character is a woman.
And I couldn't tell you what she has.
I think she has, it'ssomething with her lip,
I don't even remember what it is,
but her lip is likedifferent, we'll just say.
- Could it be like facialparalysis or something like that.
A lip clef-- It looks like...
Like a clef or somethingwould be the, just,
I'm sorry if I'm getting this wrong
(16:26):
'cause I'm just remember Ihaven't seen the show in a while,
but the really interestingthing that I found
about that show is there is zero,
zero, zero mention of it.
- Hmm.
- I think I remember oneepisode like a few seasons in
where somebody saidsomething or something was
(16:47):
kind of inferred and therewas an eyebrow raised.
Like I can identify withthat, you know, when you were,
and you might put togetherthat 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,
(17:09):
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 makeout there, but none others.
Like that's the only one that I would say.
- So I've just Googled this.
- Oh, did, you? (speakerstalking over each other)
- The first thing that I, honestly,
(17:29):
this is like, this isperfectly proving my point
because what, like you say,this is great, like it this.
- Well, I mean, and Ijust watched the show.
I haven't Googled anything either,
Google is a different story.- Yeah, I know.
- The first thing that's comeup is a Daily Mail article
and type the headline is, "Icannot deal with Her Lips,
viewers of Netflix comedy 'Working Moms'
(17:51):
mock its star because of herbotched upper lip as someone
as some complaint herdistracting 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 inour world, does it right
and the audience doesn't accept it.
(18:14):
- And this is where weare proactively wanting
to work with the, likecreative professionals
with the entertainment industrybecause they really can lead
on this stuff and theycan lead from the front
and they can basically, whetherthe public like it or not,
they can take a strongview on something, and say,
"We're gonna do this whetheryou are gonna convey or not."
(18:35):
There was a case inthe UK and I don't know
whether this reached thestates not that long ago,
where there was a children's TV presenter
who has a limb difference.
So she basically doesn'thave like a lower arm.
- Mm-hmm.
- And all of these parentswere writing in to complain
that this person was likescaring their children
(18:57):
and I think it was theBBC, they just were like,
"Huh, we're like-"- Yeah.
- They're just like,"We're not doing that."
- Like, yeah.(everybody laughing)
- Yeah.- I can't even imagine
as like a show producer whatyou'd say, you'd just be like,
"This is not a relevant concern.
Please come back withsomething real to say."
Like.- Mm-hmm.
(19:19):
- So given all this,I think this is great.
This is, I mean this like,in this just little microcosm
of this organic discussionwe've really illustrated
like everything that you'retalking about Phyllida,
you know, so in FaceEquality International,
in the work that you do, like,like twofold, first of all,
(19:41):
where are you seeing and howare 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, youknow, where do you see it?
(20:03):
Like in the time thatyou've been doing this,
where do you see it making sort of,
and I'm sure there's smallincremental societal changes,
you know?
- Yeah, I'm not really,
I need to be talkingabout the charity more.
I'm plugging it more, I'mtalking about myself. (laughs)
- We're talking aboutit like the shows onto-
- Say it.- Like a bunch
of regular people, we should really get
to like a podcast subject here, right?
(20:24):
- So- (laughs)(everybody laughing)
Our model is quite unique
and I think it's justindicative of the point
in time that we're at.
And I'm sure you talk about the history
of disability organizationsand charities here as well,
where it's very medical model focused
where it's very focusedon direct interventions
(20:45):
with their community,which can be problematic,
it can be great,
it's indicative of people needing support,
but it's very much focused onthe idea of someone needing
to be fixed, of the individualhaving some overcome.
And this is a reallytricky narrative overcome
(21:06):
the challenges that arelargely based around living in
an ableist society.
What Face EqualityInternational does in working
with organizations that are doing
that vital direct interventionwork is we focus on
the societal stuff.
We focus on making societya more equitable place
(21:30):
where there are, wherepeople are seen and heard,
where people are no longer bullied,
where there are adequate lawsin place to protect people
from discrimination, but alsojust trying to move towards
that model where people areseen and heard and celebrated.
And that, I know this is an oxymoron,
but that facial difference is normalized.
(21:52):
That it's just a part of humanity.
And I think you can't haveone without the other.
You can't have just our work.
You can't, but you have to havethe 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
(22:14):
more inclusive then peoplewouldn't need so much support
with their wellbeing.
People wouldn't need tokeep going after surgery
after surgery to fitwithin 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 mymind a lot is that we are trying
(22:34):
to really, really shiftsocietal perceptions
around facial difference.
And some of them aredeeply, deeply entrenched.
- Yeah, so Dara, I want youto, this is interesting, right?
Because if you thinkabout what we do, right,
and, Phyllida, what we do, whatour organization does is we
actually, make environmentsthat are inclusive
(22:59):
for people with disabilities.
It just happens to be websitesand these digital properties.
But as you were talkingabout kind of your mission
and what you're trying todo, which is to really change
the environment, not the individual.
It's to say the individualdoesn't need to change,
it's society, right, in this case,
the environment of society,it's really very parallel
(23:22):
or at least analogous to what we're doing.
We're saying, "Look, you know, a person
who's got a cognitive disabilityor a mobility impairment
or who is blind or has,is hearing issues."
You need to create anenvironment they can operate in
versus expecting them to do something.
So I think that that's areally interesting correlation.
(23:46):
And we really don't actuallyon the show talk a very deeply
about the medical aspects of disability.
We talk more aboutaccommodation environment
and stuff like that.
The other thing I wanted
to kind of pull out too isyou used a term ableist,
which we hear every once in a while pop up
on this podcast, and it's not,
(24:07):
it's probably not areally well-known term.
Maybe in our circles it's better known
than in some other circles.
So can you do me a favor andjust define ableist for us?
And if you don't want dothat, I'm happy to do it,
but you're the one whosaid it, so I thought I.
- Well, this is the thing,
is everybody has theirown interpretation of it.
- Mm-hmm.
For us, particularly as itrelates to facial difference,
(24:30):
it's about the social model of disability
and thereby, the social model of ableism,
which is being limited bythe attitudes of others.
So whether that ispeople being more biased.
So whether that issaying, "Well, you know,
I won't hire you becauseyou look a certain way,"
or whether that is peopleovertly bullying or like,
(24:54):
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 canlargely be quite negative
that we're trying to undo. (laughs)
(25:15):
- Right.
- Yeah.- I was actually-
- Go ahead, Dara.
- Oh, I was actuallycurious about a specific,
when I was looking up FaceEquality International,
I actually came across a specific campaign
that you all were doing,that you had been doing
around Halloween, had beendoing a specific campaign.
I'd love to hear about that more
(25:35):
'cause it was social media-basedto 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 thatfacial difference is scary,
that it is a Halloween costume.
So each year when Halloweencomes around, many of us,
(25:57):
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 andonline makeup artists,
we're seeing more and morelooks like Freddy Krueger looks,
(26:19):
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 ahuman being is not something
(26:43):
for others to deem scary.
It is not something for othersto stereotype in such a way
that does cause bullying,does cause ostracization
of an already kind ofmarginalized, hidden community.
So we got together a handful of people,
(27:04):
like a handful of activists toshare their real experiences
of when they've been told, you know,
"Oh, well you don't need towear a Halloween costume,
or is that a mask, is that real?"
So it was real, it wasn't scripted.
And we put a video togetherto go out on TikTok
to directly kind of target this community
(27:26):
that are kind of probablyunwittingly putting
these Halloween-scarredmakeup looks together
and not realizing that actually this,
there's an entire communityout here that are finding
this really quite hurtful.
And this is not usadvocating cancel culture.
We don't want to have tochallenge every incidence
(27:47):
of something that is regarded as offensive
because then we'll just get hit
with this woke police dialoguewhere people aren't willing
to engage in a meaningful conversation.
What we are trying to do ishave those conversations,
is to have thoseconstructive conversations
and to not be told thatwe are just snowflakes,
that we just need to kind ofbuckle up and deal with it
(28:11):
to say that actually no, thisis 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 thisconversation and let's hear
from the lived experiences of people
that this is their face,this is their identity,
this is actually their culture.
(28:32):
We talk a lot more aboutcultural appropriation now
and how you wouldn't seesomeone doing Blackface.
You probably wouldn't seesomeone as often now trying
to be made up to look disabled.
So, it, this, that same kindof courtesy should extend
to someone with a facial difference.
(28:55):
- Do you find that, you know,
I was just thinking aboutthis and it happens with,
you know, when we look at this
kind of world of disabilities,
depending on the disability type,
accommodations can either besort of very binary or easy
to understand, or theycan be more difficult.
So, you know, forexample, if you're blind,
(29:15):
you need something on yourcomputer that reads aloud to you,
that's what you need.
If you're deaf, you need anything
that's representedauditorily to be written.
So that would be a captionor something like that.
It's not a, you know,there's certainly things
that people don't think of,
but that accommodation ispretty straightforward.
(29:35):
If you have a cognitivedisability, it's different
what one person witha cognitive disability
might need is differentfrom somebody else.
So my question for you isthis whole societal thing
that you're talking about, andas 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 extremethat probably makes sense
(29:58):
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, itstarts to like find this spot
in the middle where maybeit doesn't really belong.
Do you find that it'sreally difficult sometimes
to unravel like kind ofwhat's okay or where it's okay
(30:22):
to go down that road maybe a little bit
and it kind of makessense from, wait a minute,
we're being discriminatoryhere because I can see
that just being not theeasiest thing for somebody
to navigate who's trying,you know what I mean?
- Yeah, and it's trickyand what I've learned is
that through not just this situation
(30:44):
but all sorts of situationsis that having the expectation
that people have common sense.
(everybody laughing)
It's like, it's just,
you're always gonna be let down. (laughs)
- You know, this is the time.- To me, it's so obvious.
- I get to say that mygrandpa had a phrase where
when people would do somethingwithout common sense,
(31:05):
he would be like, "It'sthe human element."
And that, (laughs) tome, sticks in my mind
when you say that. (laughs)
- The tricky thing-- I just think even trying
to apply common sense sometimesin 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 thiswhole kind of conversation
(31:27):
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, (scoffs) I mean, itshould be pretty obvious.
It's just the fact that women,
there's this whole free-the-nipplekind of conversation.
(31:49):
- that I've. - gotten that
- A nipple is not nudity
and that just because it'son a woman doesn't mean
that it should be kind of a violation
of community standards,
but versus a man can justfreely show a nipple.
Anyway, I digress.
What's really kind of insidious about this
and where I think actually this is
(32:10):
where facial difference movesmore into the medical model,
the kind of the impairmentmodel and the model
that I think you might be interested
in this community isartificial intelligence.
So, on social media,
an algorithm of a machine cannot tell
the difference between someone with a scar
(32:32):
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 betweensomeone that is just wanting
to show their face and somethingthat is actually violent
or graphic or might cause harmto kind of certain viewers.
(32:57):
So this is what we're seeinga lot at the moment is
because artificial intelligence
and facial recognitionsoftware has not been built
with large enough data sets in terms
of what is a human face.
It's basically notregarding lots of people
with a facial differences human.
(33:18):
- Hmm.- So whether this is failing
to get through passport gates
or as I said, being kind ofcensored on social media,
we've seen on a numberof 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,
(33:40):
this content was flagged
and blurred out on Instagrammarked as sensitive,
violent graphic, and then herentire account was suspended.
So that-
- Not even a machine.- In itself,
is a case of when somethingbecomes a physical barrier,
a physical barrier for someonewith a facial difference
(34:02):
to be able to navigatethe world, so we are part
of this initiative calledDisability 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
(34:24):
and it's with an AI kind of bot,
they are then being judgedon the tone of their voice.
They are then being judgedon their appearance,
whether their facial expressions as well.
And that is all being fedinto a machine that is
basically saying whether aperson is a hireable candidate
or not.- Mm.
- And there is no accommodation for that.
(34:47):
Basically, you might becompletely disregarded.
There's no, and there'sno kind of recourse.
You don't know perhaps whyyou've been scored very lowly
at like very low bythis kind of AI software
for an interview, butit's because your face
perhaps doesn't move
(35:07):
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
(35:31):
within the perception ofwhat a machine regards
as a human face.
- Is there, are there statisticsout there on people with,
you know, facial differenceslike that not being hired
as often or?
- Yeah, and there's growing research
(35:52):
and commentary around this.
So there was an infamous case
at Google a number of years ago,
that I think it was adeveloper that actually was
kind of pushed out ofGoogle because she raised
the fact that their facialrecognition software was racist.
(chuckles) So it wasgrouping in Google photos,
(36:15):
it was grouping a bunchof Black people into
an album called "Gorillaz," I think.
- I remember when I heard about this
and I remember it was a hugescandal when that hit the news.
And, yeah.
- So it's...
There are parallels, of course,
and our kind of non-technicalunderstanding is
(36:38):
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
(37:01):
where they were beingdenied a photo ID card
because facial recognition software was
not seeing their faceface as a human face.
- Wow.
- So we have lots ofkind of anecdotal stories
that we're trying tocompile at the moment.
We fed into a United Nations convention
(37:21):
on the rights of persons with disabilities
kind of thematic report on this issue.
And it's something that we'retrying to kind of maintain
an active dialogue on becauseit is particularly pertinent
with this facialrecognition software aspect,
kind of, this is where it kindof parallels with your work
because it's aboutcreating those environments
(37:44):
where people can have access.
- Mm.
- So it's kind of like you'rebuilding up on this issue,
you're kind of built, you'rein that stage of research
basically, when you'regoing 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
(38:06):
to things being checkedwith data, but it's,
that's always a weirdperiod because you have,
you know so much, butit's not categorized yet.
It's like, yeah.
- We know so much.
And naturally, the kind ofthe AI space knows it too.
The social media platforms know it too,
(38:29):
but there's all of thisred tape around, okay,
well what is actually gonnabe doing done about it
and how can we help?
And we like I said previously
around the entertainmentindustry, we are here,
come and talk to us, comeand involve the community
in the solutions that, youknow, need to be developed,
(38:49):
but it's not yet really happening.
- Mm, so it's like thedialogue hasn't started yet,
so that kind of meansthings are stalled out
because you can't goplaces 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 advocatecancel culture, we don't want
(39:11):
to necessarily have tostage this big scandal.
Well, it's not stage,it's exposes a scandal.
It's real, we're not havingto stage anything. (laughs)
- But it's kinda likeyou'd rather talk about it
versus have it be ascandal you'd rather talk
about before it becomesa big thing in the news.
(39:32):
You'd wanna just talkabout it person-to-person.
Yeah.- Well, my...
My previous experience isjust that I don't want to feed
into this narrative around particularly
like social justiceorganizations that just want
to call stuff out, just wantto shout about something
(39:55):
that I wanna be part of a solution.
I wanna recognize thatthis might not have been
an intentionally discriminatory practice.
It's just the way that thingsare developed and like you say
about that inherently kind of ableist
with like trying to undo history
and this is followingin the footsteps of that
(40:16):
and we wanna work together to prevent it.
- Do you hear from peoplethat have, you know,
you've helped that you'vechanged their lives ever?
- Yeah.
(40:37):
The thing is we don't do direct
kind of individual-level work.
We hear from people all thetime that are appreciative
of what we're doing.- Mm-hmm.
- Absolutely, and we've gotthis lovely little community
that we're developing onsocial media. (chuckles)
- So what about the reverse of that?
(40:58):
Like you said, "Hey,
you know, Hollywood,we're here, talk to us."
Do you ever have somebody?
Have you had somebodyreach out and say, "Hey,
we're trying to do thisbetter, can you help us along?"
- Yeah, for sure.
I did a talk this morning witha big kind of media company.
So more and more like, I'm more like PR
(41:20):
and advertising those sorts of things.
And when it comes toconversations and running webinars
and like lunchtime chats about diversity,
equity, and inclusion andhow this extends to people
with facial differences.
Absolutely, like that'shappening more and more.
And we wanna kind of go about that
(41:44):
in a kind of two-pronged approach.
So where we sit legallywithin the disability space,
we wanna be coming togetherwith disability organizations
and strength in numbers andthere is solidarity there.
But at the same time,
there are some very specific experiences
that we wanna draw out that do require
(42:05):
that tailored specialist approach,
that recognizes that thisis a unique human experience
that should be validated on its own.
- So you're kind of workingbetween, 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 thegroup and the individualness.
(42:27):
- Yeah, we shoot ourselvesin the foot a lot, probably.
(everybody laughing)
- 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 smallerthings, I was curious to,
(42:48):
I know you have stuffthat's outside Britain,
outside the US.
How's that been connectingsort 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 reallyunderstand the parallels
(43:08):
that we have, I mean the human experience
of facial difference isuniversally challenging
and that's what it's about.
It's like finding that commonground and there will be
really differing opinions,differing language,
kind of some divisive,tricky conversations.
(43:28):
But largely we all want the same thing.
That being said, we are stilla relatively new organization.
We only formed in 2018
and with the UK-based founder.
So we were set up
by a burn survivor calledDr. James OBE is his,
that James Partridge OBEis his official title.
(43:50):
So he had that and connection,
he had another, andnot-for-profit that he set up
and he built all of theseconnections around the world.
So we've been quite YK-UScentric 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
(44:11):
the most effective way toserve a global community.
And this is, I thinkit's inherent in the way
that we approach kind ofinternational development
and public kind of global health as well,
is looking at it through thelens of West is best (chuckles)
when it's actually not the case.
It is very much a senseof needing to understand
(44:37):
the global challenges, theway that culture plays a part
in facial difference andthe perception of people
with facial differences.
And actually, there are partsof the world where it's a hell
of a lot easier to livewith a facial difference
because like I said, thereisn't such a pressure
to look a certain way.
There isn't such aprevalence of social media
(45:01):
or there isn't such aplastic 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 humanrights violations in low
and middle-income countries where access
to basic healthcare is very limited.
But also where there area lot of superstitions
(45:24):
around facial differenceand 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, hasjust been an unbelievably,
we learned so much on this podcast and-
- We really do.- Listen to you talk.
- I always go and tell myfamily about stuff later.
(everybody laughing)
- So I wanna thank youfirst and foremost for just,
(45:46):
I mean, I think Dara and Ipretty much just sat here
and listened to you talk(laughs) because one,
you have a wonderfulway about you, but two,
which is, it's just reallyfascinating and not something
that in our line ofbusiness, it's not, you know,
not focus what we pay attention to.
So we really appreciateyou coming in and sharing
and clearly, you're, you know,
you've overcome a lot yourselfand are very confident
(46:10):
and have leaned into thisto the point where you're,
you know, trying to helpthe world basically.
So it's all absolutely wonderful.
But as we wrap up here very quickly,
is there any last thingthat you, we didn't cover,
you wanna reemphasize beforeI officially sign off?
- I think just reinforcing that point
(46:31):
that we want to have a stake
in the disability rights movement.
We want to have a stakein disability spaces
and find that common groundand we're often overlooked.
So please, come andtalk to us, we're here.
Like we're... (laughs)
- 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,
(46:52):
like we're very friendly.(everybody laughing)
- And we'll put all of thatin the notes for everyone.
Yeah, we always have links.
Yeah, we'll reach out to you later
about getting our linkspacket prepared. (laughs)
- Perfect.- Alright,
well, this is Mark Millerthanking Phyllida and Dara,
and reminding you allto keep it accessible.
(47:15):
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- Hey, welcome to RealPeople, Real Stories podcast,
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tell somebody about it.
Hey, even link to it fromyour accessible website.
Welcome, everybody, thanksagain for joining us.
I want to jump right in, and first of all,
welcome once again to theshow our producer, Dara.
(00:43):
It's wonderful to have youshowing up as a regular
and jump right in with our guest Phyllida.
Did I do good on the name?- Yeah, you did good. (laughs)
- Yes, as I practiced beforehand.
I practiced beforehand so,
and so I wanna kind of diveright into your story here.
(01:04):
And you know, I understand that you're
the Chief Executive Officerof a company and that,
in that company kind of involves
all sorts of different organizations.
Can you tell us a little bitabout what you are, about,
what that's about, and maybe alittle bit how it came about?
- Of course, yes, so hello,yes, I'm Phyllida Swift.
(01:27):
Yeah, I am the Chief Exec
of a charity called FaceEquality International.
So we are a membership first and foremost
of other charities, other not-for-profits
other support groups.
Our focus is thefacial-difference community.
So what does that mean?
Sometimes you hear terms likedisfigurement like deformity.
(01:50):
We tend to kind of varythe 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, itcould be acquired or episodic.
So that includes things likea cranial facial condition,
(02:11):
a clef lip and palate is very common.
Trauma and illness can be
some of the kind ofacquired facial differences.
And then episodic facialdifferences like skin conditions
that can come and go.
Me, myself, I have facial scarring
and that is where myinterest in this space comes.
(02:32):
So in 2015, I was in a car accident.
I was 22 years old and I wassupposed to be volunteering
in Ghana and we were driving overnight,
was supposed to be goingaway for the weekend.
We were a bunch of volunteers driving
around this horrible road
(02:56):
where the drivers thereare just absolute maniacs.
And we were driving overnightand our driver tried
to overtake and basically,the whole side of the van
that I was on justcrumbled in and that was
where my face was.
So I came out with a wholehost of different injuries.
Everybody in the van survived,
(03:21):
but came out, as I said,
lots of different injuriesand lots of broken bones
and lots of time spent in hospital there.
So I spent about a weekin hospital in Ghana,
and then about a week inhospital back here in the UK
where I'm from, which mademe appreciate the NHS here
and the healthcare that we have.
- Yes.- That's too,
(03:44):
the first kind of thingI remember is waking up
in a van with, and just touching my face
and feeling it cut open.
And then I remember kind ofwaking up again on a road
and then waking up againwhere they were flinging me
on a waiting room table andsewing me up there and then.
(04:04):
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 thatyou speak to can attest
to ongoing medicaltreatment, spending time in
and out hospitals, spendingtime recovering, that is a lot.
(04:29):
But for me, it was the factthat I now had a big old scar
on my face.- Mm.
- Like the scar on my face runsfrom the top of my head down
to the bottom of my cheek.
And where I didn't havethe best surgical care
in that immediate aftermath,it's not very kind of aligned.
It's not as, I guess, aestheticas it could possibly be,
(04:53):
had I had top plasticsurgeons at my disposal,
and nor have I gone back
for lots of scar revision surgeries.
So I was now this 22-year-oldgirl in university
now associated with thisthing that I know society sees
(05:14):
as largely ugly, largelythe mark of a villain,
of a bond villain ofsomeone not to be trusted,
someone immoral, or someone vulnerable.
Every time you see someonewith a facial scar on screen
in the media, they are thevillain, they are the bad person,
they are not to be trusted.
(05:34):
And you know what, thatjust really drove me wild.
And that was kind of the first thing,
the first spark that waslit within me to say,
"Well, actually, no,
there's something thatcan be done about that.
I wanted to reshape the narrative
that dictates our perception of scars.
(05:55):
And I wanted to prove people wrong.
I wanted to prove to peoplethat scars are something
to celebrate and that Ican still feel confident,
I can still feel beautifulwith a scar on my face.
And, yeah, that's the verylong and short. (laughs)
- Thank you for that.
And I know it's notalways easy probably in,
and people are probably asking you
(06:16):
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 thatas you were talking, you know,
in, and also in the way that you laid out
(06:37):
sort of the different wayssomebody could come up
with something that's not, you know,
that's different in their face.
What really strikes me as oneis that you were a young woman
when this happened, and everythingyou said about scarring,
I feel like is sort oftimes two or times 10
for a young girl versus a guy, you know,
(07:00):
because I think that thosethings can be true as well
for a guy, but it also mightbe tough or it might be,
you know, it might inenhance some of those,
what we consider to bepositive masculine traits.
And the fact that this happenedto you at 20 years old means
that you spent quite a bit of your life
without the scarring, andthen, or moving on with it.
(07:23):
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 ascar and was still in school,
what were some of the starkdifferences in the way
that you were treated, thatyou sort of instantly noticed?
- I would say it wasn't overtlybeing treated differently.
(07:45):
And I don't know whetherthis is a cultural thing.
I live in the and, we are known
for our stiff British upperlip where we don't say things
to people's faces, we justthink them behind their backs.
- Mm-hmm.
- We've got those here inthe West too, by the way.
I'm in New England and in Dara's in
(08:06):
what'd you say, Kentucky?
So I think that we couldnickname, 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. (laughs)
- There's Miranda Lambert in her song,
"My Mama's Broken Heart," she has a line
that says it doesn'tmatter what you think,
(08:28):
it only matters how you look.
And she is referring to that Southern,
just suck it up, put yourmakeup on, go outside,
don't talk about the troubles.
- Mm.- So.
- And I've got a Glaswegiangrandmother as well
and they are tough.
- Yeah.- They are, you know,
(08:49):
she'll be saying, "Oh,I've got this ailment
and this ailment and I'm, youknow, I'm on death's door,
but I'm fine, I'm fine, it's all good.
- Big deal. (laughs)- Tell me about your day,
how are you?"
- Yeah. (laughs)- Yeah.
- That's it, so we share across the pond,
we share a bit of that with you.
- (laughs) So, yeah, what Iwill say is, I think to pick up
on your point about thispotentially being gendered,
(09:09):
I think you are absolutely right
and I think facial difference intersects
with lots of different identities.
And there is a heightenedpressure for a woman
to look a certain way.- Mm-hmm.
- We are measured by ourbeauty and we are measured
by a beauty standard thatis largely unrealistic.
(09:31):
So you are right to pick up on that.
And actually, one of the firstkind of enlightening moments
for me was in hospital and Ithink I was having an eye test
and the nurse who, blessher, was trying to help,
she was trying to make me feel better.
She could see that Iwas feeling vulnerable
(09:52):
and she could see that Ihad this big, basically,
open wound on my face.
And she said, "Don'tworry, like my nephew,
he was in a car accident.
He has a big scar on hisface and he's now a model.
He's so handsome," and Ithought, "That's lovely.
But he's a bloke, he's a guy."
Like for a guy, it's rugged, it's manly,
(10:14):
it's a badge of honor.
It's very different.
And I think I've now learned
that it doesn't matterwhat your gender is,
it doesn't matter what your race is.
It doesn't matter how obviousyour facial difference is,
it's about the impact thatit has on you as a person.
- Mm-hmm.- I speak to people.
- That's a great way to see it.
(10:35):
- Yeah, I speak to people allthe time who have something
that makes them look different,
that might not even be visiblewhen 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 culturethat you've grown up in.
(10:57):
It's about whether or not there is a
kind of superstition attachedto that facial difference.
There are lots of kindof parts of the world
where craniofacial conditionsor albinism or other
kind of facial differences areseen as a mark of the devil.
They're seen as the factthat you've sinned the fact
(11:18):
that you've used a knifeduring a solar eclipse
and you've brought shame upon your family.
It's all of those contextsaround facial difference
and around it being a markof shame and a massive
source of stigma, and that was my lens.
My lens was only everseeing scars in a painted,
in a negative light that, again,
(11:42):
I had to then cope with lookingin the mirror and seeing
an entirely differentface and suddenly having
to kind of feel like myselfagain when I just looked
like this entirely different person.
And I could see one side ofmy face that looked like me,
but one side that I just triedto almost disassociate with.
(12:03):
- Mm.
- But that was really hardbecause 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. (chuckles)
So it was really tricky and Ithink most people were lovely.
There was that kind of look ofpity in lots of people's eyes
(12:24):
that drove me absolutely wild.
It was more the fact that Iknew what they were thinking
that was stifling those conversations.
I have had the odd comment
and the staring is a verycommon experience for me
and lots of other people, butit's more what is unspoken.
(12:45):
It's like my internaldialogue when I'm trying
to disarm someone in thatfirst initial meeting to think,
what is it that you are actually thinking?
And then I would stumble overwhat my response would be
and we'd have this awkward interaction
where they don't know how to look.
And it's those momentsthat are really tricky
to kind of try and take a hold of.
(13:09):
- I guess I'll ask is, youknow, you talk about like
the pressure of likemedia perception fitting
with society perception.
And I know that FacingEquality International has done
a certain amount of advocacy around media.
Is there anything that youthink is doing a good job
in how it portrays any character
(13:31):
with facial difference thatyou look at and you're like,
"Yeah, that thing is, thatthing understands what's up."
- See, this is an interesting one
because I think theproblem at the moment is
the representation isdisproportionately negative
or disproportionately stereotypical.
And that's where the issue lies.
(13:53):
And I think sometimes it plays too much
into that narrative ofthere are one of three
kind of one-dimensionalstories 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
(14:14):
more and more representation
of facial difference every single day.
And that could be that I'magain looking at things
from a very and lens, but I'm seeing
more and more representationfrom the states as well.
And that is something to really celebrate.
And when there isincidental representation
of someone acting and theyhave a facial difference
(14:36):
and it's not the likefocal point of the story,
then I know that I don't really need
to necessarily workanymore, I've done my job.
Because at the moment, it's always,
there needs to be a backstory,
there needs to be a sobstory as we would say.
It needs to be, oh, likethis person has had a
really tricky life andit, I understand that
(14:58):
and we can't shy away from the fact
that having a facialdifference can be tricky.
It can be hard in today's society.
We don't yet live in a worldwhere people aren't bullied
or discriminated against.
That is not the reality butwe can also tell those stories
of people just livingtheir life, of people
just going about their dayof people just walking down
(15:20):
the street without needing apat on the back for existing.
- I think that, you know, theway that you described this,
it dawns on me that this isa specific within a world
that generally does this.
You know, whether it's, youknow, your weight, your gender,
your, whatever it might be,your skin color, that we...
(15:43):
There's all sorts of thingsthat come along with that
that shouldn't, that we put along with it.
I will say, I wantedto point out one thing
as you were talking aboutthat, and Gary, your,
your really good questionthere about like,
where's the media doing this, right?
And as you were talking, itbrought to mind a show out
of Canada called "Working Moms," streams,
(16:05):
I believe on Netflix, and themain character is a woman.
And I couldn't tell you what she has.
I think she has, it'ssomething with her lip,
I don't even remember what it is,
but her lip is likedifferent, we'll just say.
- Could it be like facialparalysis or something like that.
A lip clef-- It looks like...
Like a clef or somethingwould be the, just,
I'm sorry if I'm getting this wrong
(16:26):
'cause I'm just remember Ihaven't seen the show in a while,
but the really interestingthing that I found
about that show is there is zero,
zero, zero mention of it.
- Hmm.
- I think I remember oneepisode like a few seasons in
where somebody saidsomething or something was
(16:47):
kind of inferred and therewas an eyebrow raised.
Like I can identify withthat, you know, when you were,
and you might put togetherthat 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,
(17:09):
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 makeout there, but none others.
Like that's the only one that I would say.
- So I've just Googled this.
- Oh, did, you? (speakerstalking over each other)
- The first thing that I, honestly,
(17:29):
this is like, this isperfectly proving my point
because what, like you say,this is great, like it this.
- Well, I mean, and Ijust watched the show.
I haven't Googled anything either,
Google is a different story.- Yeah, I know.
- The first thing that's comeup is a Daily Mail article
and type the headline is, "Icannot deal with Her Lips,
viewers of Netflix comedy 'Working Moms'
(17:51):
mock its star because of herbotched upper lip as someone
as some complaint herdistracting 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 inour world, does it right
and the audience doesn't accept it.
(18:14):
- And this is where weare proactively wanting
to work with the, likecreative professionals
with the entertainment industrybecause they really can lead
on this stuff and theycan lead from the front
and they can basically, whetherthe public like it or not,
they can take a strongview on something, and say,
"We're gonna do this whetheryou are gonna convey or not."
(18:35):
There was a case inthe UK and I don't know
whether this reached thestates not that long ago,
where there was a children's TV presenter
who has a limb difference.
So she basically doesn'thave like a lower arm.
- Mm-hmm.
- And all of these parentswere writing in to complain
that this person was likescaring their children
(18:57):
and I think it was theBBC, they just were like,
"Huh, we're like-"- Yeah.
- They're just like,"We're not doing that."
- Like, yeah.(everybody laughing)
- Yeah.- I can't even imagine
as like a show producer whatyou'd say, you'd just be like,
"This is not a relevant concern.
Please come back withsomething real to say."
Like.- Mm-hmm.
(19:19):
- So given all this,I think this is great.
This is, I mean this like,in this just little microcosm
of this organic discussionwe've really illustrated
like everything that you'retalking about Phyllida,
you know, so in FaceEquality International,
in the work that you do, like,like twofold, first of all,
(19:41):
where are you seeing and howare 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, youknow, where do you see it?
(20:03):
Like in the time thatyou've been doing this,
where do you see it making sort of,
and I'm sure there's smallincremental societal changes,
you know?
- Yeah, I'm not really,
I need to be talkingabout the charity more.
I'm plugging it more, I'mtalking about myself. (laughs)
- We're talking aboutit like the shows onto-
- Say it.- Like a bunch
of regular people, we should really get
to like a podcast subject here, right?
(20:24):
- So- (laughs)(everybody laughing)
Our model is quite unique
and I think it's justindicative of the point
in time that we're at.
And I'm sure you talk about the history
of disability organizationsand charities here as well,
where it's very medical model focused
where it's very focusedon direct interventions
(20:45):
with their community,which can be problematic,
it can be great,
it's indicative of people needing support,
but it's very much focused onthe idea of someone needing
to be fixed, of the individualhaving some overcome.
And this is a reallytricky narrative overcome
(21:06):
the challenges that arelargely based around living in
an ableist society.
What Face EqualityInternational does in working
with organizations that are doing
that vital direct interventionwork is we focus on
the societal stuff.
We focus on making societya more equitable place
(21:30):
where there are, wherepeople are seen and heard,
where people are no longer bullied,
where there are adequate lawsin place to protect people
from discrimination, but alsojust trying to move towards
that model where people areseen and heard and celebrated.
And that, I know this is an oxymoron,
but that facial difference is normalized.
(21:52):
That it's just a part of humanity.
And I think you can't haveone without the other.
You can't have just our work.
You can't, but you have to havethe 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
(22:14):
more inclusive then peoplewouldn't need so much support
with their wellbeing.
People wouldn't need tokeep going after surgery
after surgery to fitwithin 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 mymind a lot is that we are trying
(22:34):
to really, really shiftsocietal perceptions
around facial difference.
And some of them aredeeply, deeply entrenched.
- Yeah, so Dara, I want youto, this is interesting, right?
Because if you thinkabout what we do, right,
and, Phyllida, what we do, whatour organization does is we
actually, make environmentsthat are inclusive
(22:59):
for people with disabilities.
It just happens to be websitesand these digital properties.
But as you were talkingabout kind of your mission
and what you're trying todo, which is to really change
the environment, not the individual.
It's to say the individualdoesn't need to change,
it's society, right, in this case,
the environment of society,it's really very parallel
(23:22):
or at least analogous to what we're doing.
We're saying, "Look, you know, a person
who's got a cognitive disabilityor a mobility impairment
or who is blind or has,is hearing issues."
You need to create anenvironment they can operate in
versus expecting them to do something.
So I think that that's areally interesting correlation.
(23:46):
And we really don't actuallyon the show talk a very deeply
about the medical aspects of disability.
We talk more aboutaccommodation environment
and stuff like that.
The other thing I wanted
to kind of pull out too isyou used a term ableist,
which we hear every once in a while pop up
on this podcast, and it's not,
(24:07):
it's probably not areally well-known term.
Maybe in our circles it's better known
than in some other circles.
So can you do me a favor andjust define ableist for us?
And if you don't want dothat, I'm happy to do it,
but you're the one whosaid it, so I thought I.
- Well, this is the thing,
is everybody has theirown interpretation of it.
- Mm-hmm.
For us, particularly as itrelates to facial difference,
(24:30):
it's about the social model of disability
and thereby, the social model of ableism,
which is being limited bythe attitudes of others.
So whether that ispeople being more biased.
So whether that issaying, "Well, you know,
I won't hire you becauseyou look a certain way,"
or whether that is peopleovertly bullying or like,
(24:54):
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 canlargely be quite negative
that we're trying to undo. (laughs)
(25:15):
- Right.
- Yeah.- I was actually-
- Go ahead, Dara.
- Oh, I was actuallycurious about a specific,
when I was looking up FaceEquality International,
I actually came across a specific campaign
that you all were doing,that you had been doing
around Halloween, had beendoing a specific campaign.
I'd love to hear about that more
(25:35):
'cause it was social media-basedto 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 thatfacial difference is scary,
that it is a Halloween costume.
So each year when Halloweencomes around, many of us,
(25:57):
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 andonline makeup artists,
we're seeing more and morelooks like Freddy Krueger looks,
(26:19):
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 ahuman being is not something
(26:43):
for others to deem scary.
It is not something for othersto stereotype in such a way
that does cause bullying,does cause ostracization
of an already kind ofmarginalized, hidden community.
So we got together a handful of people,
(27:04):
like a handful of activists toshare their real experiences
of when they've been told, you know,
"Oh, well you don't need towear a Halloween costume,
or is that a mask, is that real?"
So it was real, it wasn't scripted.
And we put a video togetherto go out on TikTok
to directly kind of target this community
(27:26):
that are kind of probablyunwittingly putting
these Halloween-scarredmakeup looks together
and not realizing that actually this,
there's an entire communityout here that are finding
this really quite hurtful.
And this is not usadvocating cancel culture.
We don't want to have tochallenge every incidence
(27:47):
of something that is regarded as offensive
because then we'll just get hit
with this woke police dialoguewhere people aren't willing
to engage in a meaningful conversation.
What we are trying to do ishave those conversations,
is to have thoseconstructive conversations
and to not be told thatwe are just snowflakes,
that we just need to kind ofbuckle up and deal with it
(28:11):
to say that actually no, thisis 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 thisconversation and let's hear
from the lived experiences of people
that this is their face,this is their identity,
this is actually their culture.
(28:32):
We talk a lot more aboutcultural appropriation now
and how you wouldn't seesomeone doing Blackface.
You probably wouldn't seesomeone as often now trying
to be made up to look disabled.
So, it, this, that same kindof courtesy should extend
to someone with a facial difference.
(28:55):
- Do you find that, you know,
I was just thinking aboutthis and it happens with,
you know, when we look at this
kind of world of disabilities,
depending on the disability type,
accommodations can either besort of very binary or easy
to understand, or theycan be more difficult.
So, you know, forexample, if you're blind,
(29:15):
you need something on yourcomputer that reads aloud to you,
that's what you need.
If you're deaf, you need anything
that's representedauditorily to be written.
So that would be a captionor something like that.
It's not a, you know,there's certainly things
that people don't think of,
but that accommodation ispretty straightforward.
(29:35):
If you have a cognitivedisability, it's different
what one person witha cognitive disability
might need is differentfrom somebody else.
So my question for you isthis whole societal thing
that you're talking about, andas 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 extremethat probably makes sense
(29:58):
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, itstarts to like find this spot
in the middle where maybeit doesn't really belong.
Do you find that it'sreally difficult sometimes
to unravel like kind ofwhat's okay or where it's okay
(30:22):
to go down that road maybe a little bit
and it kind of makessense from, wait a minute,
we're being discriminatoryhere because I can see
that just being not theeasiest thing for somebody
to navigate who's trying,you know what I mean?
- Yeah, and it's trickyand what I've learned is
that through not just this situation
(30:44):
but all sorts of situationsis that having the expectation
that people have common sense.
(everybody laughing)
It's like, it's just,
you're always gonna be let down. (laughs)
- You know, this is the time.- To me, it's so obvious.
- I get to say that mygrandpa had a phrase where
when people would do somethingwithout common sense,
(31:05):
he would be like, "It'sthe human element."
And that, (laughs) tome, sticks in my mind
when you say that. (laughs)
- The tricky thing-- I just think even trying
to apply common sense sometimesin 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 thiswhole kind of conversation
(31:27):
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, (scoffs) I mean, itshould be pretty obvious.
It's just the fact that women,
there's this whole free-the-nipplekind of conversation.
(31:49):
- that I've. - gotten that
- A nipple is not nudity
and that just because it'son a woman doesn't mean
that it should be kind of a violation
of community standards,
but versus a man can justfreely show a nipple.
Anyway, I digress.
What's really kind of insidious about this
and where I think actually this is
(32:10):
where facial difference movesmore into the medical model,
the kind of the impairmentmodel and the model
that I think you might be interested
in this community isartificial intelligence.
So, on social media,
an algorithm of a machine cannot tell
the difference between someone with a scar
(32:32):
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 betweensomeone that is just wanting
to show their face and somethingthat is actually violent
or graphic or might cause harmto kind of certain viewers.
(32:57):
So this is what we're seeinga lot at the moment is
because artificial intelligence
and facial recognitionsoftware has not been built
with large enough data sets in terms
of what is a human face.
It's basically notregarding lots of people
with a facial differences human.
(33:18):
- Hmm.- So whether this is failing
to get through passport gates
or as I said, being kind ofcensored on social media,
we've seen on a numberof 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,
(33:40):
this content was flagged
and blurred out on Instagrammarked as sensitive,
violent graphic, and then herentire account was suspended.
So that-
- Not even a machine.- In itself,
is a case of when somethingbecomes a physical barrier,
a physical barrier for someonewith a facial difference
(34:02):
to be able to navigatethe world, so we are part
of this initiative calledDisability 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
(34:24):
and it's with an AI kind of bot,
they are then being judgedon the tone of their voice.
They are then being judgedon their appearance,
whether their facial expressions as well.
And that is all being fedinto a machine that is
basically saying whether aperson is a hireable candidate
or not.- Mm.
- And there is no accommodation for that.
(34:47):
Basically, you might becompletely disregarded.
There's no, and there'sno kind of recourse.
You don't know perhaps whyyou've been scored very lowly
at like very low bythis kind of AI software
for an interview, butit's because your face
perhaps doesn't move
(35:07):
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
(35:31):
within the perception ofwhat a machine regards
as a human face.
- Is there, are there statisticsout there on people with,
you know, facial differenceslike that not being hired
as often or?
- Yeah, and there's growing research
(35:52):
and commentary around this.
So there was an infamous case
at Google a number of years ago,
that I think it was adeveloper that actually was
kind of pushed out ofGoogle because she raised
the fact that their facialrecognition software was racist.
(chuckles) So it wasgrouping in Google photos,
(36:15):
it was grouping a bunchof Black people into
an album called "Gorillaz," I think.
- I remember when I heard about this
and I remember it was a hugescandal when that hit the news.
And, yeah.
- So it's...
There are parallels, of course,
and our kind of non-technicalunderstanding is
(36:38):
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
(37:01):
where they were beingdenied a photo ID card
because facial recognition software was
not seeing their faceface as a human face.
- Wow.
- So we have lots ofkind of anecdotal stories
that we're trying tocompile at the moment.
We fed into a United Nations convention
(37:21):
on the rights of persons with disabilities
kind of thematic report on this issue.
And it's something that we'retrying to kind of maintain
an active dialogue on becauseit is particularly pertinent
with this facialrecognition software aspect,
kind of, this is where it kindof parallels with your work
because it's aboutcreating those environments
(37:44):
where people can have access.
- Mm.
- So it's kind of like you'rebuilding up on this issue,
you're kind of built, you'rein that stage of research
basically, when you'regoing 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
(38:06):
to things being checkedwith data, but it's,
that's always a weirdperiod because you have,
you know so much, butit's not categorized yet.
It's like, yeah.
- We know so much.
And naturally, the kind ofthe AI space knows it too.
The social media platforms know it too,
(38:29):
but there's all of thisred tape around, okay,
well what is actually gonnabe doing done about it
and how can we help?
And we like I said previously
around the entertainmentindustry, we are here,
come and talk to us, comeand involve the community
in the solutions that, youknow, need to be developed,
(38:49):
but it's not yet really happening.
- Mm, so it's like thedialogue hasn't started yet,
so that kind of meansthings are stalled out
because you can't goplaces 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 advocatecancel culture, we don't want
(39:11):
to necessarily have tostage this big scandal.
Well, it's not stage,it's exposes a scandal.
It's real, we're not havingto stage anything. (laughs)
- But it's kinda likeyou'd rather talk about it
versus have it be ascandal you'd rather talk
about before it becomesa big thing in the news.
(39:32):
You'd wanna just talkabout it person-to-person.
Yeah.- Well, my...
My previous experience isjust that I don't want to feed
into this narrative around particularly
like social justiceorganizations that just want
to call stuff out, just wantto shout about something
(39:55):
that I wanna be part of a solution.
I wanna recognize thatthis might not have been
an intentionally discriminatory practice.
It's just the way that thingsare developed and like you say
about that inherently kind of ableist
with like trying to undo history
and this is followingin the footsteps of that
(40:16):
and we wanna work together to prevent it.
- Do you hear from peoplethat have, you know,
you've helped that you'vechanged their lives ever?
- Yeah.
(40:37):
The thing is we don't do direct
kind of individual-level work.
We hear from people all thetime that are appreciative
of what we're doing.- Mm-hmm.
- Absolutely, and we've gotthis lovely little community
that we're developing onsocial media. (chuckles)
- So what about the reverse of that?
(40:58):
Like you said, "Hey,
you know, Hollywood,we're here, talk to us."
Do you ever have somebody?
Have you had somebodyreach out and say, "Hey,
we're trying to do thisbetter, can you help us along?"
- Yeah, for sure.
I did a talk this morning witha big kind of media company.
So more and more like, I'm more like PR
(41:20):
and advertising those sorts of things.
And when it comes toconversations and running webinars
and like lunchtime chats about diversity,
equity, and inclusion andhow this extends to people
with facial differences.
Absolutely, like that'shappening more and more.
And we wanna kind of go about that
(41:44):
in a kind of two-pronged approach.
So where we sit legallywithin the disability space,
we wanna be coming togetherwith disability organizations
and strength in numbers andthere is solidarity there.
But at the same time,
there are some very specific experiences
that we wanna draw out that do require
(42:05):
that tailored specialist approach,
that recognizes that thisis a unique human experience
that should be validated on its own.
- So you're kind of workingbetween, 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 thegroup and the individualness.
(42:27):
- Yeah, we shoot ourselvesin the foot a lot, probably.
(everybody laughing)
- 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 smallerthings, I was curious to,
(42:48):
I know you have stuffthat's outside Britain,
outside the US.
How's that been connectingsort 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 reallyunderstand the parallels
(43:08):
that we have, I mean the human experience
of facial difference isuniversally challenging
and that's what it's about.
It's like finding that commonground and there will be
really differing opinions,differing language,
kind of some divisive,tricky conversations.
(43:28):
But largely we all want the same thing.
That being said, we are stilla relatively new organization.
We only formed in 2018
and with the UK-based founder.
So we were set up
by a burn survivor calledDr. James OBE is his,
that James Partridge OBEis his official title.
(43:50):
So he had that and connection,
he had another, andnot-for-profit that he set up
and he built all of theseconnections around the world.
So we've been quite YK-UScentric 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
(44:11):
the most effective way toserve a global community.
And this is, I thinkit's inherent in the way
that we approach kind ofinternational development
and public kind of global health as well,
is looking at it through thelens of West is best (chuckles)
when it's actually not the case.
It is very much a senseof needing to understand
(44:37):
the global challenges, theway that culture plays a part
in facial difference andthe perception of people
with facial differences.
And actually, there are partsof the world where it's a hell
of a lot easier to livewith a facial difference
because like I said, thereisn't such a pressure
to look a certain way.
There isn't such aprevalence of social media
(45:01):
or there isn't such aplastic 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 humanrights violations in low
and middle-income countries where access
to basic healthcare is very limited.
But also where there area lot of superstitions
(45:24):
around facial differenceand 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, hasjust been an unbelievably,
we learned so much on this podcast and-
- We really do.- Listen to you talk.
- I always go and tell myfamily about stuff later.
(everybody laughing)
- So I wanna thank youfirst and foremost for just,
(45:46):
I mean, I think Dara and Ipretty much just sat here
and listened to you talk(laughs) because one,
you have a wonderfulway about you, but two,
which is, it's just reallyfascinating and not something
that in our line ofbusiness, it's not, you know,
not focus what we pay attention to.
So we really appreciateyou coming in and sharing
and clearly, you're, you know,
you've overcome a lot yourselfand are very confident
(46:10):
and have leaned into thisto the point where you're,
you know, trying to helpthe world basically.
So it's all absolutely wonderful.
But as we wrap up here very quickly,
is there any last thingthat you, we didn't cover,
you wanna reemphasize beforeI officially sign off?
- I think just reinforcing that point
(46:31):
that we want to have a stake
in the disability rights movement.
We want to have a stakein disability spaces
and find that common groundand we're often overlooked.
So please, come andtalk to us, we're here.
Like we're... (laughs)
- 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,
(46:52):
like we're very friendly.(everybody laughing)
- And we'll put all of thatin the notes for everyone.
Yeah, we always have links.
Yeah, we'll reach out to you later
about getting our linkspacket prepared. (laughs)
- Perfect.- Alright,
well, this is Mark Millerthanking Phyllida and Dara,
and reminding you allto keep it accessible.
(47:15):
- [Announcer] This podcast hasbeen brought to you by TPGi,
the experts in Digital Accessibility.
Stay tuned for more Real People,
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Las Culturistas with Matt Rogers and Bowen Yang
Ding dong! Join your culture consultants, Matt Rogers and Bowen Yang, on an unforgettable journey into the beating heart of CULTURE. Alongside sizzling special guests, they GET INTO the hottest pop-culture moments of the day and the formative cultural experiences that turned them into Culturistas. Produced by the Big Money Players Network and iHeartRadio.