- Hello everyone.
My name is Stef Sanjati and welcome to my home.
I made a video a few years ago called
My Face: Waardenburg Syndrome,
which basically feels like another lifetime,
if I'm being honest.
And I revisited it once before,
two years ago,
in a video called My Face: Waardenburg Syndrome (Part Three)
or Part Two?
That was the second one.
My bad.
This is the third one
but I'm approaching it
from a slightly different angle.
Because when I talk about Waardenburg Syndrome
and I say Waardenburg Syndrome, people looking
for Waardenburg Syndrome or for a greater understanding
will look for those videos.
But people that just come to my videos randomly,
and look at my face and ask questions like,
"Why are you eyes so far apart?"
and, "What happened to your face?"
What their beautiful misguided questions
that I will fully answer in this video,
they're not gonna click on a video
that says Waardenburg Syndrome,
they're gonna click on a video that says,
"Why are my eyes so far apart?"
so that's why we're here.
I have experienced something
that you could call beauty bullying for a very long time
and that is bullying related to
standards of beauty that are unattainable.
It applies differently to every person
because every person is a different person, OK,
and I think we know what that means.
That means we each have different experiences
and different bone structure.
What I like to say to people typically is,
when they ask me why my eyes are so far apart,
I ask them why their eyes are so close together
because that's just as weird to me
as my eyes being far apart is to you.
It's actually not weird at all.
But the point is, why on Earth
is somebody's face looking different from yours weird?
Do you expect everybody to look like you?
I don't understand.
There are a number of symptoms
that are a part of Waardenburg Syndrome
and I'm gonna touch on all of them
but I'm gonna focus on my eyes mostly for this video
'cause that has been the biggest source of pain in my past.
In my present, they're a present.
They are a gift.
I love them and they are, in my opinion, incredible
and I don't care if that sounds cocky,
I don't care if that sounds kinda narcissistic
because I have fought tooth and nail to feel that way
about myself and I will not apologize for it.
On a very relevant note, I'm actually part of
Rimmel London's new I Will Not Be Deleted campaign,
which is an incredible initiative dedicated
to tackling issues like beauty bullying
and the root causes of them, like racism,
like ableism, like not understanding people
have different facial structures,
like not understanding people look different
from each other, right?
I feel like that's a pretty simple concept,
but I guess it's not.
Let's just explore this, OK?
I'm gonna play a clip from one of the videos
I did with Rimmel London as part
of the I Will Not Be Deleted campaign
that you can watch right now in this here video.
It's gonna play right now.
OK, you ready?
Growing up,
and I grew up in a very small town
where everybody looked the same,
where they had the same background,
and I didn't have that exact background
because in my family,
there is a genetic mutation called Waardenburg Syndrome.
And what it does basically is
it alters your facial features
and we just have wider set features and broader features.
And I think it's gorgeous and I think it's stunning,
but for a long time I couldn't look
in the mirror without hyperventilating
because I was taught by my peers
that it was inherently ugly,
and it wasn't and it never was.
So that was really the first experience I had with bullying.
And then as I grew up,
I came to understand that I was transgender
and that I had to transition for my mental health
otherwise I couldn't live.
Like, there was no option, there was no confusion,
there was just...
I understand this now, that I'm a woman
and this is what I have to do.
When it comes to people deleting images
out of a reaction to harassment,
it's something that I've experienced.
A couple of years ago, I had
I did just that.
I deleted an image because people made me
feel bad about myself,
and it's extremely unfortunate I think
a very big problem that so many people
and so many images were removed out of embarrassment
or out of a forced shame and I think we need
to do something about it.
Being shameless and proud of who you are
and what you look like is totally OK.
And I think more of us need to have that
look-at-me attitude
'cause there's nothing wrong with that.
And showing people that you love yourself
is a great way to teach them to love themselves, too.
Like I said in that clip,
I grew up in a community where everybody did look the same.
I grew up in a community where everybody
was a White, Dutch, Christian person
that was also heterosexual and also cisgender.
Like, that was pretty much the standard in my town.
There was not variation,
and if there was, it was generally frowned upon
and you were seen as lesser in the community.
And people from that community might say that's not true,
but listen, it was, OK.
It was.
And growing up in that community,
being ostracized was something
I'd become very accustomed to.
This was before I understood anything
about my gender or my sexuality
and I guess that's not really the topic of this video
but for those of you that aren't familiar with me,
I am transgender.
I'm a transgender woman,
which has nothing to do with Waardenburg Syndrome
but it's relevant because it's about
these layers of otherness that I was made to feel
about things that are just intrinsic about myself
that I cannot change.
I cannot change my facial structure.
You can say as much as you want about my face,
that's not gonna make it look like yours,
and I'm not gonna try to make it look like yours
because I like my face.
It's mine.
I don't want your face, I want my face.
And I don't think you want somebody else's face, either.
What Waardenburg Syndrome does in particular to my eyes,
we'll start there and then we'll go down the list,
is it creates this blue color that I have.
It's actually a lack of color in my eyes
and it just reflects blue because most of the light
in the world is blue apparently.
That's what I was told by somebody,
I think it was a doctor.
I don't remember.
I was like eight years old, OK?
But in general, Waardenburg Syndrome does affect pigment
in that way.
But, again, focusing on the eyes,
the color of them, the spacing of them.
What you'll notice, and this is something
that frustrated me a lot with art teachers growing up,
'cause I've always been a creative individual
and I remember being in art class in high school
and I would draw a face and they would say,
"no, you got the proportions wrong.
Eyes have one finger distance in between them."
And I was like, "are you sure they do?
Are you sure that eyes have that distance,
or are you just saying that
most people's eyes have that distance?
Or are you saying that White European people's eyes
have that distance between them
and because you're White European background,
you should probably draw eyes that way
even though your eyes are not that way
and it's not important that you're
not represented in art at all?"
Was that what they were saying?
No, of course that's not what they were saying.
But when you say things like that,
when you say things like, "eyes have one distance
of finger between them,"
that's not true.
You can't say that,
because, number one, everybody's face is different.
Everybody's proportions are different.
All you're doing is reinforcing a beauty standard
on a drawing of all things.
Why are you doing that?
And even worse, why are we doing that
to ourselves and to people?
That is horrific.
Anyway, back to the point.
Waardenburg Syndrome eyes distance spacing.
The shape in particular is a bit different, too.
They're very almond and round instead of like,
like, I don't know how your eyes are, I don't know.
These are my eyes.
I don't know, how are your eyes?
You know what I mean?
But if you take a picture of my face
and you overlap my eye with a
standard European, Eurocentric, White person eye,
it's gonna have a slightly different shape.
I'm OK with that.
I love it.
I love my eyes.
A big part of
why I have a platform on YouTube now
and why I'm successful
is because of the Waardenburg Syndrome video.
And I think when people watch that original video
they could feel all the pain
that I was put through growing up.
And even as an adult still I'm harassed daily
because I look unlike other people.
And I just think that's such a silly thing
to attack somebody for.
Of course I look different from you because I'm not you.
And you don't look the same as me.
Am I harassing you for that?
No, absolutely not, because there's no point.
I could harass you to look like me.
It's not gonna make you look like me,
it's not gonna make you want to look like me.
Just quickly, I'm gonna cover everything else
Waardenburg Syndrome does.
I mentioned earlier it affects pigments
so that's also why I have this natural white hair
at the front.
I have tinted it.
It's not naturally pink, OK,
but it's naturally white and not blonde,
it's white.
And it kind of irritates me when people say
it's naturally blonde
because white and blonde are not the same thing.
Thank you.
And actually, I'm gonna likely have a full head
of white hair before I'm 30 years old
and I'm very excited about that
and I really want it
and I can't wait
and I'm hoping it happens.
My mom had full white hair before she was 30,
so fingers crossed, right?
I also have some pigmentation patches on my body
that are slightly different in color from most of my skin
but they're not very extreme.
Another thing Waardenburg Syndrome causes is hearing loss.
I don't really like to call it hearing loss,
because I didn't lose it, I just was born without it.
I am deaf in my left ear, so I hear nothing out of this side
and I actually have a tattoo on that side to show that.
I don't know if you can see it.
It's a Mute sign that you would have
on a computer or a phone or something,
just to show if I had may hair up for example
I'm hoping people will notice it and maybe infer
that I can't hear out of that ear
and then they won't talk to me on that side
'cause I will not know what the hell they're saying.
And even that,
like, I don't dislike that.
I don't dislike my deafness,
I don't really have any feelings about my deafness.
It's an inherent part of who I am.
I can't change it.
And even if I could,
I think there might be surgeries now that allow me
to have hearing in that ear, like an implant or something,
and believe me I've done the
I've read about these.
I know the research.
You don't have to tell me my options
because I don't want them.
I'm OK with my deafness.
It's not a burden to me.
It's not a problem.
It's just another aspect of me.
First of all, I would have to relearn like every sound ever.
I would have to grow accustomed
to things being on this side of me,
which isn't comfortable.
I don't want things on that side of me.
I have lived 23 years
without people talking to me on this side
and to suddenly just have people on this side of me,
like, that makes me anxious.
I don't want that
and I don't need it.
It's not like it needs to happen,
and I think a very similar thinking needs to be applied
to people that don't look like you.
Whether that's race,
whether that is a difference in facial structure,
whether that is weight,
it could be anything,
but why are we so fixated on making people like us?
Why can't we just embrace the differences
between each of us
and celebrate those
and recognize those as beautiful?
Human variation is beautiful,
and we need to embrace it
instead of trying to change it.
I think that is one of our greatest, greatest triumphs
as we've evolved and as we've become
able to advance with things like medical science
and science in general,
is our ability
to make life accessible
to a greater variety of people.
If I was born maybe a thousand years ago,
I would have been killed because I didn't look right.
My mom would have been killed because she didn't look right,
but we look good.
We look fine.
We're fine
and it frustrates me when people, for example,
let me give you an example.
Recently, I became aware that an individual
attacked my appearance in video on the internet,
and I was like, hmmm,
that's kind of unfortunate,
because all that means
is that person is unhappy with themselves, right?
And in response, a lot of people were like,
"That's not nice.
Don't make fun of her, she has Waardenburg Syndrome,"
as if that makes it an excuse for me
to not be attractive or something.
And let me just explore this a little.
Let me explain this.
I am not your token ugly person.
I'm not ugly.
I'm beautiful.
I'm gorgeous.
Why are you wording things in a way that implies
that it's not OK to make fun of me
because I can't help being ugly,
when the reality is I'm not ugly?
And instead of saying, "don't make fun of her
'cause she can't help being ugly,"
say, "don't make fun of her because she isn't ugly,"
because human variation is gorgeous and wonderful
and everybody is different from each other.
If we all looked the same,
why would we want that?
That's horrific.
I am not interested
and I don't have time
to be your token ugly person,
because I'm not your token ugly person
because I'm not ugly and neither is anybody else.
If you feel ugly,
it's because you've been trained and told that you're ugly.
And I've been there.
I used to not be able to look in the mirror.
I'd look in the mirror and I would hyperventilate
and have to run away from it
because I was taught so strongly by all of my peers
that I was the most monstrous thing
on the face of this Earth.
I believed that with every ounce of my being.
And people to this day still try to get me to believe that.
And it's not true,
and it's not true for you either,
I promise.
And the first time you realize that
and the first time you embrace
what people are attacking about you physically,
and you say this is a part of my life,
whether it's changeable or not,
this is part of my life right now,
and I'm not going to hate myself because of it.
The first time that happens,
the weight lifted off of your shoulders
will be unspeakable
and I so badly wish for that to happen for you.
I could talk about my facial features all day,
which I have done before,
and I mean I'm all about
raising awareness for Waardenburg Syndrome,
but I am not the only person that's receiving
this kind of harassment,
not by a long shot.
I receive the same kind of harassment for my face
that people of color receive for not being White,
that disabled people receive,
and none of us deserve it.
What did we do?
We're just here.
We're just existing.
Let us be.
We don't need to be like you to be OK.
We're fine.
And to harken back to the Rimmel London
I Will Not Be Deleted campaign,
you can harass me for my eyes as much as you want.
They're not going away.
You cannot delete them.
You cannot delete me.
You cannot delete a Black woman's skin.
You cannot delete a disabled person.
You cannot delete a person's beautiful big body.
You cannot do anything about it
and you shouldn't
because it's beautiful.
OK?
And I understand that I've been talking to you, the viewer,
as if you are a perpetrator of these things
and I don't think all of you are, of course not,
of course not.
It's just the way my rage is manifesting.
But what I'm hoping is that
if you're not a perpetrator of these kinds of things,
you will hear me say this,
and you will use this language
the next time you encounter this kind of harassment
online or in the physical world.
Because let me just clarify,
there is nothing not real about the online world.
The second it became part of us finding
jobs, shelter, resources, love,
it became the real world.
There is nothing fake about it.
Who you are online is who you are in the physical world.
And it's time we start to champion causes
as much as we would in the physical world.
It's time we defend people like we would
in the physical world.
It's time to stop letting people get away
with this harassment
for no reason
just because it's easier to scroll past a comment,
because it's not as easy for us
to scroll past a comment when we receive it.
We read it, we internalize that.
And it's not good.
And you can try your best to unlearn
internalizing negative comments.
It's not as easy as it sounds.
I encourage you to be a part of this movement,
to stop harassing people if you are,
and if you see it to do something about it
to defend those people,
to speak up for them,
to say this is not OK.
This person does not have to be like you to be a person.
If you want to check out the rest of the
I Will Not Be Deleted campaign videos,
you can find links in the description box
to a plethora of other incredible beautiful people
talking about their experiences with their differences.
And it's great.
Go look at it.
Until next time, just remember
human variation is beautiful and so are you.
I will see you again soon, bye!
(kissing sounds)