Hello little buns, it is Stef, welcome back to my home!
You are either a subscriber- Hi!-
OR you are somebody who watched my "My Face: Waardenburg Syndrome" video,
and you're here for Part Two. You're here for another round!
I uploaded that video- oh gosh, what- February of last year,
and it really is the video that allowed me to start a career on YouTube, and I'm very thankful for that.
It also brought me a lot of attention that I did not want, um, from, you know, people that are awful.
BUT I sort that out on my own time, so it's okay. I forgive them.
What I want to do, though, is I just wanna revisit the video and clarify a few things,
and also respond to a few things that were, I guess, raised in the comments, or in response to my video.
If you have not seen it, the link is right here!
There is an annotation, or there should be a link on mobile now that you can click on,
or a link in the description box, if you wanna go see the original video.
It's gotten somewhere around 5.8 million views as of today, or 5.6?
I can't quite remember! It's a lot.
For my channel, it's a lot!
Therefore, it is by far the most, I guess, discussed thing on my channel
that I've seen from commenters is my face- still!
So I just wanna talk about a couple things that I say in the video,
and I wanna respond to a few... things that have been said. Okay?
So we're gonna start with the good stuff.
We're gonna start with the things that people say that they think is good. And some of it is good!
But I just...
Some of it's not.
Something a lot of commenters say- I guess they think it's like a comforting thing-
is like, "Oh, you look normal! You don't- I didn't know you had a syndrome!"
Kay. I wanna deconstruct this, but I also need to pair it with the whole misconception about what a syndrome is.
I don't know the actual definition of syndrome. Okay?
So it have several meanings, or it could apply to each case seperately.
But Waardenburg syndrome is not a disease, okay?
It is not...
a disease.
Like, I don't really know how else to say this.
It is...
not a disease.
The reason I say this is because people in the comments seem to refer to it as not "syndrome,"
but as like, "Oh, this 'disease'... looks great," or something.
Like, things like that. And I'm like, "No, it's not a disease." Diseases are contagious, they kill people!
This is not that, okay? It's not that. It's just my face is cute, that's the only thing, okay?
So there's that, okay. And I wanna go back to the deconstructing thing, which was, uh- what was it?
Oh! "You look normal!" The problem that I have with this statement:
It assumes that I need to adhere to the standard of normal.
That might be too backwards a way of saying it.
When you say "Oh, you look normal," it implies that I need to fit a normal.
And that's not cute, that's not- that's not true. NONE of us should have to fit a box to be considered beautiful.
That was the point of me making that video.
It was not to be like, "Pity me!" It was, "I look different, and that's cool!" Okay?
That's what I wanted to communicate, was that I look different and it's cool, not that I wanna look the same as you.
And I hope you wanna look like yourself, as an individual, rather than the same as everybody else.
Express yourself! Do what you wanna do with your body, that's what I mean by that.
And when it comes to a genetic syndrome, like me, like with my face,
I'm not saying, "I wanna look normal, please tell me I look normal," I'm saying, "This is me, I look cool!"
Another thing that I've, um, noticed with this video is the people in the comments, to this day, more than anything,
don't discuss Waardenburg syndrome, but instead they like to discuss my gender.
And at this point, if you've been following me for a while, you know that I'm a woman,
you know I'm transgender. That is totally cool.
But these people that watch my video don't understand that that was before I even knew I was trans, let alone before I started transitioning.
So they start hurling these things at me like, "Oh, you'll never be a woman," "You look like a man," all this stuff.
It's like, no, I know, because that's what I was, okay?
I look like a man in that video...
because I was a man in that video!
I'm aware of that. I didn't think I was a woman back then, I did not KNOW I was a woman back then.
So that's... irritating.
But, I mean, people, when they see a video with 5 million views, they don't think, "Oh, I should check out the rest of their channel,"
they just see it as standalone thing, like a one-hit wonder. Which I get. I get that, I totally get that.
But just in case you stumble upon this video,
I need you to know that that discussion is kind of irrelevant to the entire topic of the video. Cool!
Since I posted that video, I received many messages, emails, comments, uh... Instagram- like everywhere, everywhere.
Messages from other people with Waardenburg syndrome wanting to talk about it.
Like, oh, either they didn't know they had it, or, you know, they knew they had it, but they thought they were the only one,
or it helped them embrace their, their look. Things like that.
I want you to know, if you have Waardenburg syndrome, you can be f*cking badass, alright?
Embrace your face! Okay?
I know everybody's telling you "You look weird," "You look like a fish," "You look like Stitch," "You look like that b*tch from Splice,"
that's all the stuff that I hear every day. Okay? I know.
I know what you hear from people.
But you know what? That b*tch from Splice looked cool, just like me.
I look cool as hell, okay? So do you! We both look cool as hell!
And I know it's easier said than done when people tell you to ignore what they say and focus on yourself,
but that's exactly what you gotta do.
In high school, and I mentioned this in the video a bit, is how people treated me badly because of it, right?
It was more primary school than high school.
Because I was, I guess, being abused and bullied for so many different things, was I built up a shell.
I did the thing that people do in movies, okay?
They build up this weird shell where nobody can tell them, you know, like, "Hey you're- are you okay?"
They just- they just, what is it? They, um... alienate themselves from the general populace. I did that, because I had no other choice.
And if you're experiencing something similar, whether it's because of Waardenburg syndrome,
or because of your sexuality, or your gender, or your job, or whatever, what-have-you.
Another syndrome that affects the way you look, whatever it is! A disability, whatever. Whatever it is.
If you are experiencing a similar thing, it is okay to put up the shell.
And I know people will tell you not to do that, but you have to protect yourself,
and it's okay to protect yourself as long as you come out later.
If you build up the shell as a temporary solution, and then you leave that place that's causing you harm,
and you find a new place, and you let the shell down, you'll be okay.
It's okay to defend yourself, and to get away.
Fight-or-flight. Flight. Flight- fly! Fly away! Fly away from what's causing you trouble, okay?
You should fly, okay? Fighting can get you hurt; fighting can cause damage. You should fly away.
I didn't really do that. I mean, I was young. Huh...
This is going into a whole nother subject. Real quick seque here!
When I was young, when I was experiencing these things, I was literally a child in school.
I didn't wanna switch schools, I didn't wanna leave town because literally there was no other option.
So I built up this shell.
If you have other options, to fly away without leaving town where you can feel safe, do that.
But if you have to wait, it's okay! It's okay, it's okay.
Back to Waardenburg syndrome! Oh my gosh!
Another thing people have discussed about my video "Waardenburg syndrome," "My Face: Waardenburg syndrome," okay, is:
Some people seem to think that it is fetal alcohol syndrome, even though I'm telling them that it's not.
If it was fetal alcohol syndrome, I would tell you it's fetal alcohol syndrome, kay?
There's no shame in being a person born with fetal alcohol syndrome, cause that's not your fault.
If that was what I had, I would say, "Yeah, it's fetal alcohol syndrome."
If it was Down syndrome, I'd be like, "Yeah, it's Down syndrome."
This is Waardenburg syndrome, it's different, okay? Like...
I don't know why you're trying to tell me what I have genetically, when I'm aware, and doctor's have told me what I have.
So... [chuckle]
Another thing I want to address is this...
this trend of people trying to tell me that "Oh, this celebrity has Waardenburg syndrome. THIS celebrity has Waardenburg syndrome."
NO.
There is no famous actor with Waardenburg syndrome. And I know you wanna try to think there is,
because you might see a resemblance in one of my features with this actress, or something.
Or you did a google search of "Waardenburg syndrome celebrities" and Mila Kunis came up.
Waarden- okay. Mila Kunis does not have Waardenburg syndrome, she has heterochromia.
Heterochromia is one symptom of Waardenburg syndrome that a person can have.
It's where your eyes are two different colors. She has heterochromia, she does not have Waardenburg syndrome.
The girl that plays Margaery in Game of Thrones-- why can't I remember her name?
She's an amazing, beautiful woman-- does not have Waardenburg syndrome.
She has a wind tunnel face, as I like to call it, which is snatched and beautiful, but is not Waardenburg syndrome.
People think she has Waardenburg syndrome 'cause her eyes are far set, wideset.
But that's not the only thing that makes it Waardenburg syndrome.
There is a distinct difference, and I'm gonna show you right now on the screen,
between a Waardenburg syndrome face, okay? And a wideset face.
Can you see the difference? It's in the eye shape, somewhere around here.
And because I do my eyeliner so heavy, you can't really tell, when I don't have makeup on.
But it's that inner tear duct area where it's kind of, like, different shape.
Wideset eyes does not mean Waardenburg syndrome, it's the shape as well as the wideset-ness.
There's a lot of things. And I wanted to address that.
Regardless of all of these- these things that I wanna respond to, I just need people to understand,
I wanna go back to this, I wanna go back to this video, how I felt when I recorded that video.
Because it was so simple! It was a simpler time!
All I wanted people to know was that they could be beautiful
without trying to adhere to somebody else's standard, right?
You can be beautiful with Down syndrome, with Waardenburg syndrome, with fetal alcohol syndrome!
You can be beautiful with whatever skin tone you have!
And NOBODY should be saying they are blind to your difference,
whether that is skin tone, whether that is a syndrome, whether that is whatever,
nobody should be saying they can't see it,
because that is a part of you that if they ignore, they're ignoring something integral about you.
They're saying that doesn't matter. It DOES matter! It's part of you. It matters!
Your skin matters, your background matters, your religion matters, your sexuality matters,
all the things that make you different are SO important. They're so, so important!
And I don't want anybody to feel like they're not. So when people say, "Oh, you look normal!"
No, I look like I have Waardenburg syndrome, and that is kick-ass!
When people say, "I'm colorblind, I don't see race!"
You are a beautiful black woman, Indian woman, Native American woman, whatever.
You are beautiful as a difference, okay? Your difference makes you beautiful.
Oh my gosh!
Why don't people understand this?
I'm not criticizing people that don't understand it about themselves,
I'm criticizing people that tell others their difference does not matter.
Because your differences make you so important and special.
And that is why I made that first video, I just- I didn't know how to word it so simply.
And even now! This video is astronomically long! And that's the first time I got that word out of my mouth.
Your differences make you important and special.
What is different about you is most certainly integral to who you are as a person.
So do not tone it down for anybody! Do not hide it from anybody.
You be you! Be yourself, rock and roll!
That is all I can discuss for today.
Otherwise, I may faint.
Truly!
It's been wonderful seeing you! I love you SO much! SO much. This has been great.
Until next time, remember that you are so cool, badass, like rock-and-roll rebel whatever,
You are so...
You are gonna lead the revolution.
We're gonna work together in the revolution, whatever it is we're revolution-izing, we're gonna do it. You and me, the truth.
I love you, bye!
[Kisses]