On this month's episode of myFace, myStory, host Dina Zuckerberg speaks with award-winning actor, presenter, and disability advocate Adam Pearson. From standout roles in A Different Man and Under The Skin to his upcoming portrayal of Joseph Merrick in the film adaptation of The Elephant Man, Adam shares how he’s using storytelling to challenge stereotypes, advocate for authentic representation, and change the narrative around disability in media and beyond.   Adam was nominated as Presenter of the Year at the Grierson UK Documentary Awards in 2016. As an actor, he has been nominated for Best Supporting Performance at the Gotham Film Awards and the Film Independent Spirit Awards. He has also been nominated for the likes of the Los Angeles Film Critics Association Awards, National Society of Film Critics Awards (US), DiscussingFilm Critics Awards, and UK Film Critics Association Awards.   Adam has been widely recognised for his award-nominated, supporting role in A24’s A Different Man, directed by Aaron Schimberg and co-starring Sebastian Stan and Renata Reinsve. Adam also co-starred in the BAFTA-nominated film, Under The Skin, with Scarlett Johansson which was directed by Jonathan Glazer. His other film credits include Chained For Life, which was also directed by Aaron Schimberg.   Adam has spoken at a number of events for the likes of KPMG, the Health Innovation Summit, Public Service & Criminology Conference, and British Association for Counselling & Psychotherapy. He has also given a TEDx talk.   Adam is an ambassador for The King’s Trust, Changing Faces and Us In A Bus. He also won a RADAR Award and a Diana Award for his campaigning work.   Adam has previously been named on The Shaw Trust’s Disability Power 100 List, as well as being nominated for Celebrity of the Year at the Sense Awards.

On this month's myFace, myStory podcast, host Dina Zuckerberg speaks with Paige Lauren Billiot, a birthmark advocate, model, and film producer redefining beauty standards. Based in LA, Paige uses her platform to create representation for those with facial differences, celebrating her birthmark as her superpower. Featured in Harper’s Bazaar, Seventeen, and Glamour, she challenges societal norms and empowers others to embrace their uniqueness with confidence. Tune in for an inspiring conversation on self-love, advocacy, and the power of authentic representation.

 

TRANSCRIPT 

00:01:34.618 --> 00:01:37.480 Hello, and welcome to My Face, My Story,

00:01:37.819 --> 00:01:40.100 voices from the craniofacial community.

00:01:40.921 --> 00:01:41.981 I'm Dena Zuckerberg,

00:01:42.042 --> 00:01:43.483 your host and director of

00:01:43.503 --> 00:01:45.343 family programs at My Face.

00:01:46.183 --> 00:01:47.444 Like many of you listening,

00:01:47.765 --> 00:01:49.344 I have a craniofacial difference.

00:01:50.165 --> 00:01:52.206 I was born with a cleft lip,

00:01:52.826 --> 00:01:53.807 a hearing loss,

00:01:53.986 --> 00:01:55.647 and no vision in my left eye.

00:01:56.709 --> 00:01:57.331 My Face,

00:01:57.370 --> 00:01:59.432 My Story is about people like us

00:01:59.512 --> 00:02:00.893 being seen and heard,

00:02:01.492 --> 00:02:02.694 about sharing stories

00:02:02.733 --> 00:02:04.015 within the craniofacial

00:02:04.034 --> 00:02:05.977 community and with others.

00:02:07.016 --> 00:02:08.758 This podcast episode is made

00:02:08.818 --> 00:02:10.259 possible through support

00:02:10.319 --> 00:02:11.920 from the Integra Foundation,

00:02:12.420 --> 00:02:14.223 committed to improving lives.

00:02:15.362 --> 00:02:15.943 By the way,

00:02:16.183 --> 00:02:17.044 whether you're watching on

00:02:17.104 --> 00:02:18.425 YouTube or listening

00:02:18.466 --> 00:02:19.926 through Apple Podcasts,

00:02:20.306 --> 00:02:22.147 click subscribe now and

00:02:22.168 --> 00:02:23.368 we'll keep you updated on

00:02:23.429 --> 00:02:25.730 future episodes so you never miss out.

00:02:27.320 --> 00:02:29.542 And if you're a fan of My Face, My Story,

00:02:30.062 --> 00:02:31.461 please rate and review the

00:02:31.502 --> 00:02:33.423 program on Apple Podcasts

00:02:33.883 --> 00:02:35.143 so we can get our message

00:02:35.242 --> 00:02:36.383 of inclusivity and

00:02:36.424 --> 00:02:38.985 empowerment to more people.

00:02:39.185 --> 00:02:41.585 Today, I am joined by Paige Villiat.

00:02:42.126 --> 00:02:44.765 Paige is a birthmark advocate, model,

00:02:44.925 --> 00:02:45.986 and film producer,

00:02:46.206 --> 00:02:47.806 creating global birthmark

00:02:47.866 --> 00:02:49.407 representation and

00:02:49.448 --> 00:02:51.627 awareness within the beauty, fashion,

00:02:51.748 --> 00:02:53.028 and media industries.

00:02:53.808 --> 00:02:55.289 She uses social media to

00:02:55.389 --> 00:02:56.569 highlight her birthmark

00:02:57.062 --> 00:02:59.462 with makeup, props, graphic design,

00:02:59.643 --> 00:03:00.823 and VFX.

00:03:01.663 --> 00:03:02.883 Her influence has been

00:03:02.984 --> 00:03:04.804 recognized in many magazines,

00:03:05.004 --> 00:03:08.045 including Harper's Bazaar, Seventeen,

00:03:08.246 --> 00:03:09.925 Glamour, and Women's Health,

00:03:10.605 --> 00:03:11.866 earning her a spot on

00:03:11.907 --> 00:03:13.206 Glamour's fifty

00:03:13.306 --> 00:03:14.587 Instagrammers you need to

00:03:14.627 --> 00:03:15.568 follow right now.

00:03:16.786 --> 00:03:18.105 When she isn't advocating

00:03:18.145 --> 00:03:19.806 for the birthmark community,

00:03:20.326 --> 00:03:21.366 she loves taking her

00:03:21.427 --> 00:03:22.948 forecast on walks in their

00:03:22.987 --> 00:03:24.989 strollers while expanding

00:03:25.049 --> 00:03:27.149 her chai tea latte palette

00:03:27.269 --> 00:03:30.389 and Scooby Doo collection.

00:03:30.430 --> 00:03:31.211 Welcome Paige.

00:03:35.951 --> 00:03:36.352 Hi,

00:03:36.572 --> 00:03:37.592 I really look forward to our

00:03:37.612 --> 00:03:38.312 conversations.

00:03:39.062 --> 00:03:39.622 Hello.

00:03:39.701 --> 00:03:41.524 Yes, I'm so excited to be here.

00:03:41.663 --> 00:03:43.025 When you asked me to join,

00:03:43.625 --> 00:03:45.325 I could not wait to have a

00:03:45.346 --> 00:03:46.167 conversation with you.

00:03:46.766 --> 00:03:48.489 I'm excited.

00:03:48.628 --> 00:03:50.810 So can you share a bit about

00:03:50.849 --> 00:03:52.230 your personal journey and

00:03:53.252 --> 00:03:54.473 how you came to embrace

00:03:54.492 --> 00:03:56.174 your birthmark as your superpower?

00:03:57.377 --> 00:03:57.798 Oh, man.

00:03:57.858 --> 00:03:58.079 I mean,

00:03:58.098 --> 00:04:00.180 that's I think any self accepting

00:04:00.199 --> 00:04:02.382 journey is quite the ride, I'm sure,

00:04:02.401 --> 00:04:04.963 as you know, and a very long one.

00:04:06.444 --> 00:04:08.626 I still feel like it's, you know,

00:04:08.665 --> 00:04:10.187 I'm still learning about myself.

00:04:10.247 --> 00:04:11.889 I'm still learning deeper

00:04:11.929 --> 00:04:13.810 levels of love and acceptance.

00:04:15.151 --> 00:04:18.052 But, yeah, I for most of my life.

00:04:19.713 --> 00:04:21.336 I would say up until, you know,

00:04:22.237 --> 00:04:23.338 a little outside of high

00:04:23.418 --> 00:04:24.439 school is when I started to

00:04:24.459 --> 00:04:26.661 get a little bit definitely

00:04:26.701 --> 00:04:28.504 more consistently comfortable with,

00:04:28.584 --> 00:04:28.863 you know,

00:04:28.923 --> 00:04:30.045 just kind of going outside the

00:04:30.064 --> 00:04:32.168 house without makeup just to run errands.

00:04:33.069 --> 00:04:35.290 I remember the end of high school,

00:04:35.670 --> 00:04:37.814 I stopped wearing like, you know,

00:04:39.278 --> 00:04:39.978 more full coverage

00:04:39.999 --> 00:04:41.420 foundation and just doing

00:04:41.439 --> 00:04:43.201 kind of like powder over the birthmark.

00:04:43.821 --> 00:04:45.322 So it was a very gradual

00:04:45.442 --> 00:04:47.903 process of accepting and

00:04:48.485 --> 00:04:49.665 then fully embracing.

00:04:49.985 --> 00:04:54.228 And how ironically life can

00:04:54.269 --> 00:04:55.310 be with having a birthmark

00:04:55.370 --> 00:04:56.009 on half of my face,

00:04:56.069 --> 00:04:57.151 I wanted to be an actress

00:04:57.271 --> 00:04:57.891 at a very young age.

00:04:59.012 --> 00:05:01.595 And I did that at high school.

00:05:01.634 --> 00:05:02.536 I was a performing arts

00:05:02.576 --> 00:05:03.877 major at Las Vegas Academy

00:05:03.896 --> 00:05:05.658 of Performing Arts International Studies,

00:05:05.678 --> 00:05:06.740 which was actually really,

00:05:06.759 --> 00:05:08.862 really fun and really great

00:05:08.901 --> 00:05:10.103 for the self-confidence and

00:05:10.122 --> 00:05:11.285 just being able to perform.

00:05:11.745 --> 00:05:12.826 I had my birthmark covered,

00:05:12.886 --> 00:05:14.168 but still being on stage

00:05:14.187 --> 00:05:15.348 and just being in that environment.

00:05:16.456 --> 00:05:20.702 And then when I moved out to LA in,

00:05:20.802 --> 00:05:22.084 very much the intention of

00:05:22.144 --> 00:05:24.067 being in front and behind the camera,

00:05:24.127 --> 00:05:24.887 always wanted to be a

00:05:24.947 --> 00:05:26.430 filmmaker to some capacity.

00:05:27.791 --> 00:05:29.634 And I took two years of

00:05:30.175 --> 00:05:31.196 trying to do the thing,

00:05:31.295 --> 00:05:33.117 trying to get an agent, the auditions,

00:05:33.137 --> 00:05:34.019 the managers,

00:05:34.500 --> 00:05:36.862 I'm trying to get into just short films,

00:05:36.901 --> 00:05:38.742 student films, whatever I could get into.

00:05:38.762 --> 00:05:41.144 And, you know,

00:05:41.204 --> 00:05:42.446 it was a very consistent

00:05:42.565 --> 00:05:44.387 pattern of confusion.

00:05:45.168 --> 00:05:47.689 And, you know,

00:05:47.769 --> 00:05:49.610 some of the same comments of just,

00:05:49.630 --> 00:05:50.612 we don't know where to put you.

00:05:50.651 --> 00:05:51.672 You're too distracting.

00:05:52.812 --> 00:05:53.072 You know,

00:05:53.132 --> 00:05:55.574 like we're very confused on like

00:05:55.615 --> 00:05:56.696 where to place you.

00:05:56.896 --> 00:05:57.096 Yeah.

00:05:58.317 --> 00:05:59.677 and I got you know I reached

00:05:59.898 --> 00:06:01.538 a threshold at a point and

00:06:01.658 --> 00:06:03.000 I got really frustrated at

00:06:03.040 --> 00:06:04.161 the process and I just

00:06:04.201 --> 00:06:05.000 realized you know what I

00:06:05.021 --> 00:06:05.841 just kind of have to make

00:06:05.882 --> 00:06:07.583 something on my own which

00:06:07.762 --> 00:06:09.163 really isn't that different

00:06:09.204 --> 00:06:10.584 of a story that I I think

00:06:10.665 --> 00:06:12.906 everybody in l.a ends up

00:06:13.065 --> 00:06:14.247 coming to realize at some

00:06:14.286 --> 00:06:15.648 point anyways that like you

00:06:15.708 --> 00:06:16.668 just you're gonna have to

00:06:16.708 --> 00:06:20.471 just kind of make your own stuff right

00:06:21.146 --> 00:06:24.408 So being really frustrated, I didn't,

00:06:24.867 --> 00:06:26.048 I couldn't make a film overnight,

00:06:26.228 --> 00:06:27.848 but I could take a photo.

00:06:28.389 --> 00:06:28.689 And I,

00:06:29.250 --> 00:06:30.470 that's when I started the Instagram.

00:06:30.509 --> 00:06:33.290 This was like mid-TwentyFifteen.

00:06:33.552 --> 00:06:34.331 I just, I felt

00:06:35.524 --> 00:06:36.624 really conflicted.

00:06:37.464 --> 00:06:39.045 I wanted so badly to be a

00:06:39.105 --> 00:06:41.906 representation in this space,

00:06:41.946 --> 00:06:43.846 but just also just in general.

00:06:44.887 --> 00:06:45.786 But at the same time,

00:06:45.846 --> 00:06:46.786 I was still struggling on

00:06:46.846 --> 00:06:49.588 my own of just how to be

00:06:49.668 --> 00:06:51.468 seen and be seen confidently,

00:06:52.329 --> 00:06:53.968 what my voice was, where to share it.

00:06:54.129 --> 00:06:56.009 And so the Instagram,

00:06:56.069 --> 00:06:57.449 I started the Instagram and

00:06:57.470 --> 00:06:58.589 started taking some photos

00:06:58.649 --> 00:07:00.250 where my birthmark was kind

00:07:00.290 --> 00:07:01.031 of the highlight.

00:07:01.271 --> 00:07:01.430 Sorry,

00:07:01.451 --> 00:07:02.591 I can kind of hear my cat in the

00:07:02.632 --> 00:07:03.132 background.

00:07:04.312 --> 00:07:06.112 He's supportive, cheerleading in the back.

00:07:06.213 --> 00:07:08.274 There you go.

00:07:08.394 --> 00:07:10.136 And yeah, the focus was the birthmark.

00:07:10.156 --> 00:07:12.517 And that was the main

00:07:12.718 --> 00:07:14.059 highlight of the photo.

00:07:14.238 --> 00:07:15.800 And I was showing it in ways

00:07:16.360 --> 00:07:17.060 that was just really

00:07:17.081 --> 00:07:18.901 empowering for me specifically.

00:07:19.062 --> 00:07:21.043 But I was hoping that it was

00:07:21.103 --> 00:07:23.024 creating a new perspective

00:07:23.084 --> 00:07:24.365 on how we see flaws.

00:07:24.425 --> 00:07:27.668 So I was highlighting it with makeup.

00:07:27.747 --> 00:07:28.988 I think I actually started

00:07:29.028 --> 00:07:29.928 doing it with graphic

00:07:29.988 --> 00:07:31.649 design and overlaying it

00:07:31.709 --> 00:07:33.552 with graphics of space.

00:07:35.192 --> 00:07:37.653 just really fun, beautiful, just like,

00:07:38.213 --> 00:07:40.336 just elements like nature,

00:07:40.396 --> 00:07:42.216 like rain and fire and all

00:07:42.257 --> 00:07:42.976 this fun stuff.

00:07:43.516 --> 00:07:45.879 And it really shifted my,

00:07:46.499 --> 00:07:48.220 like it next level as far

00:07:48.259 --> 00:07:51.262 as acceptance and, and embracement.

00:07:51.281 --> 00:07:52.942 Like I wanted to even know

00:07:52.983 --> 00:07:55.024 that was like an option.

00:07:55.064 --> 00:07:57.045 I felt so silly in that moment being like,

00:07:57.125 --> 00:07:58.725 oh my God, like I could,

00:07:58.786 --> 00:07:59.867 I could highlight this.

00:07:59.927 --> 00:08:01.067 Like that was never an

00:08:01.148 --> 00:08:02.487 option presented to me.

00:08:02.548 --> 00:08:02.788 Never,

00:08:03.728 --> 00:08:05.891 you know, taught like, you know,

00:08:05.992 --> 00:08:07.735 when we go to doctor's office, it's,

00:08:07.954 --> 00:08:08.855 it's here.

00:08:08.875 --> 00:08:09.016 Well,

00:08:09.036 --> 00:08:10.499 thank God there's maybe some things

00:08:10.538 --> 00:08:11.699 that can help cover it up

00:08:11.800 --> 00:08:13.783 or to help get rid of it, to help,

00:08:13.822 --> 00:08:16.045 you know, give you somewhat of a, um,

00:08:18.081 --> 00:08:20.264 Comfortable life, a semi-comfortable life.

00:08:20.324 --> 00:08:21.824 It was never, well,

00:08:21.846 --> 00:08:23.146 why don't you try embracing it?

00:08:23.206 --> 00:08:25.189 Why don't you try putting glitter on it?

00:08:25.228 --> 00:08:26.651 Why don't you try doing some

00:08:26.670 --> 00:08:28.233 kind of like empowerment

00:08:29.274 --> 00:08:30.675 activity where you can

00:08:30.755 --> 00:08:32.136 actually see it as art or

00:08:32.238 --> 00:08:34.340 see it as something positive?

00:08:34.480 --> 00:08:35.600 just really cool and

00:08:35.620 --> 00:08:36.381 different you know

00:08:36.481 --> 00:08:39.245 different can be cool um so

00:08:39.284 --> 00:08:41.307 that was a huge huge moment

00:08:41.346 --> 00:08:42.869 in my life was like oh my

00:08:42.908 --> 00:08:43.889 god I didn't even know this

00:08:43.909 --> 00:08:44.750 was like a thing that I

00:08:44.769 --> 00:08:46.893 needed permission to do um

00:08:46.972 --> 00:08:51.456 I think I was twenty around

00:08:51.496 --> 00:08:52.879 twenty five or something like that okay

00:08:53.557 --> 00:08:55.979 I don't know.

00:08:56.099 --> 00:08:56.599 And so, yeah,

00:08:56.639 --> 00:08:58.339 that was like I that was just

00:08:58.418 --> 00:08:59.340 a whole new world.

00:08:59.480 --> 00:09:02.179 And I everything then was like,

00:09:02.220 --> 00:09:03.181 how do I highlight this?

00:09:03.240 --> 00:09:05.160 Like, oh, that would be such a cool idea.

00:09:05.260 --> 00:09:06.221 Oh, I love that color.

00:09:06.240 --> 00:09:07.942 What an inspiration for like, like,

00:09:08.922 --> 00:09:10.903 you know, fill this in with or.

00:09:11.623 --> 00:09:14.023 And I never, never, ever thought that way.

00:09:15.183 --> 00:09:15.683 So that.

00:09:16.183 --> 00:09:16.644 Yeah.

00:09:16.703 --> 00:09:18.385 Next level made it be like, man,

00:09:18.405 --> 00:09:19.546 this is like actually like

00:09:19.605 --> 00:09:20.807 kind of like my superpower

00:09:20.866 --> 00:09:23.249 because I have a superhero now.

00:09:23.408 --> 00:09:24.870 And with some of these looks,

00:09:24.929 --> 00:09:25.971 I kind of look like one.

00:09:27.371 --> 00:09:28.471 And so that's that.

00:09:28.491 --> 00:09:29.273 That's kind of where we're

00:09:29.293 --> 00:09:31.234 at now is like finding

00:09:31.293 --> 00:09:34.096 different levels of creativity,

00:09:34.255 --> 00:09:35.336 things that I can do with it,

00:09:36.157 --> 00:09:37.818 but also how I can see it

00:09:37.879 --> 00:09:40.659 and just much more fulfilling, impactful,

00:09:41.900 --> 00:09:43.081 beautiful ways that I that

00:09:43.201 --> 00:09:44.182 I didn't really get the

00:09:44.222 --> 00:09:45.884 chance to do so when I was younger.

00:09:46.676 --> 00:09:48.457 Yeah, I love your Instagram.

00:09:49.258 --> 00:09:50.820 So what was the response you

00:09:50.860 --> 00:09:51.980 got when you started

00:09:52.240 --> 00:09:55.344 posting on social media?

00:09:55.423 --> 00:09:56.625 Response was wonderful.

00:09:56.826 --> 00:09:58.427 People really, really loved it.

00:09:58.466 --> 00:09:58.988 I mean, of course,

00:09:59.008 --> 00:10:00.249 you're going to get your your

00:10:01.548 --> 00:10:03.389 offhand person who has a

00:10:03.450 --> 00:10:05.673 comment about how the best

00:10:05.753 --> 00:10:07.495 peach in the world is disgusting.

00:10:09.057 --> 00:10:09.596 But no,

00:10:09.857 --> 00:10:12.301 the response was incredibly supportive.

00:10:13.522 --> 00:10:16.806 A lot of inspiration, actually.

00:10:17.365 --> 00:10:19.288 I think that really was a domino effect.

00:10:19.328 --> 00:10:20.750 I think I started to see people

00:10:21.490 --> 00:10:22.652 you know, comment like, wow,

00:10:22.692 --> 00:10:24.432 I didn't know you could do this as well.

00:10:24.472 --> 00:10:25.693 I've never seen a birthmark

00:10:25.714 --> 00:10:26.815 like this before or I've

00:10:26.855 --> 00:10:28.456 never seen a birthmark in general.

00:10:28.895 --> 00:10:30.717 And then people with facial

00:10:30.758 --> 00:10:31.818 differences in the

00:10:31.859 --> 00:10:33.058 birthmark community kind of

00:10:33.078 --> 00:10:34.520 starting to do similar thing,

00:10:36.241 --> 00:10:38.182 which was really, really amazing to see.

00:10:38.283 --> 00:10:39.744 And that's still to this day

00:10:40.904 --> 00:10:41.745 very much still get

00:10:41.785 --> 00:10:42.986 comments or just messages

00:10:43.027 --> 00:10:44.168 from people that they've never,

00:10:44.227 --> 00:10:45.347 ever seen anybody else that

00:10:45.388 --> 00:10:48.029 looks like them, which is, you know, it's

00:10:49.211 --> 00:10:50.311 completely understandable

00:10:50.331 --> 00:10:50.890 with the lack of

00:10:50.931 --> 00:10:52.532 representation and awareness that we have,

00:10:52.552 --> 00:10:53.412 but at the same time,

00:10:53.432 --> 00:10:55.091 for how long that we've had social media,

00:10:55.131 --> 00:10:57.293 it's still sometimes quite a surprise.

00:10:58.572 --> 00:10:58.913 But yeah,

00:10:58.952 --> 00:11:00.153 just overall incredibly

00:11:00.232 --> 00:11:03.413 supportive and it inspires

00:11:03.453 --> 00:11:06.553 a lot of people to see

00:11:06.594 --> 00:11:08.434 whatever it is that they're dealing with,

00:11:08.495 --> 00:11:09.394 whether that's a physical

00:11:09.434 --> 00:11:11.514 difference or an internal or, you know,

00:11:11.634 --> 00:11:16.155 just very like, just a self...

00:11:17.594 --> 00:11:19.076 They're in their own self-love journey,

00:11:19.096 --> 00:11:19.879 wherever that is.

00:11:21.162 --> 00:11:21.722 It's just something they

00:11:21.763 --> 00:11:23.326 haven't seen before and they...

00:11:26.657 --> 00:11:28.357 it shows that people are very much wanting,

00:11:28.398 --> 00:11:31.219 they desire to see one

00:11:31.278 --> 00:11:32.379 different in general.

00:11:32.458 --> 00:11:34.980 I think everyone's very sick

00:11:35.041 --> 00:11:36.160 of just seeing the same

00:11:36.181 --> 00:11:37.402 thing over and over again,

00:11:37.422 --> 00:11:39.243 the same type of sexual appeal,

00:11:39.283 --> 00:11:41.264 the same type of main character energy.

00:11:41.283 --> 00:11:44.205 And we wanna see what our

00:11:44.264 --> 00:11:45.466 world actually looks like.

00:11:45.546 --> 00:11:46.846 And I think people are

00:11:47.647 --> 00:11:48.486 becoming more and more

00:11:48.527 --> 00:11:50.008 vocal about that desire.

00:11:50.854 --> 00:11:51.094 Yeah.

00:11:51.754 --> 00:11:53.957 And I feel like it is a journey.

00:11:54.038 --> 00:11:55.658 I feel like we're always on that journey.

00:11:56.880 --> 00:11:58.602 It doesn't just stop one day,

00:11:58.842 --> 00:12:00.465 like even as we get older.

00:12:01.245 --> 00:12:03.087 And I feel like there's so

00:12:03.148 --> 00:12:07.613 much more people advocating

00:12:08.052 --> 00:12:09.634 and speaking up.

00:12:10.652 --> 00:12:11.952 than when I was growing up.

00:12:12.293 --> 00:12:13.693 It just feels like people in

00:12:13.714 --> 00:12:14.815 their twenties and thirties

00:12:14.855 --> 00:12:16.635 are so much more out there

00:12:16.655 --> 00:12:17.756 than I ever was.

00:12:18.477 --> 00:12:18.898 So,

00:12:20.119 --> 00:12:21.539 and I think a lot of that has to do

00:12:21.559 --> 00:12:22.581 with the people who come

00:12:22.640 --> 00:12:25.442 before us or before who

00:12:25.602 --> 00:12:26.884 have sort of paved the way.

00:12:26.943 --> 00:12:28.304 But I feel like also with

00:12:28.345 --> 00:12:30.125 social media and all these things,

00:12:31.787 --> 00:12:33.028 it seems like it's easier

00:12:33.107 --> 00:12:34.668 to get the messages out there.

00:12:34.688 --> 00:12:35.950 And it makes me so happy to

00:12:36.029 --> 00:12:37.751 see you and some of the

00:12:37.812 --> 00:12:39.572 others doing that because,

00:12:40.472 --> 00:12:44.674 I think it's hopefully helping to, um,

00:12:44.934 --> 00:12:48.177 normalize facial differences in some way.

00:12:48.197 --> 00:12:48.817 Definitely.

00:12:49.076 --> 00:12:49.236 Yeah.

00:12:49.256 --> 00:12:49.456 I mean,

00:12:49.476 --> 00:12:51.258 I think even just seeing people

00:12:52.097 --> 00:12:54.158 just happy living their lives,

00:12:54.359 --> 00:12:55.779 even like if they don't have a difference,

00:12:55.820 --> 00:12:56.700 you know, they're just,

00:12:56.740 --> 00:12:58.020 just woke up from bed,

00:12:58.280 --> 00:12:59.402 their hair's a mess.

00:12:59.422 --> 00:13:00.341 They got no makeup on,

00:13:00.381 --> 00:13:02.023 they're breaking out there, you know,

00:13:02.523 --> 00:13:03.844 whatever's hanging out and

00:13:03.884 --> 00:13:04.825 they're just living life

00:13:05.225 --> 00:13:06.686 and they're just living it beautifully.

00:13:06.745 --> 00:13:08.706 And I need to see that.

00:13:09.408 --> 00:13:12.610 I need to remind myself that

00:13:13.509 --> 00:13:14.850 perfection is messy and

00:13:14.890 --> 00:13:16.412 perfection is just existing.

00:13:17.832 --> 00:13:18.673 And seeing other people's

00:13:18.693 --> 00:13:20.375 self-confidence is very contagious.

00:13:20.394 --> 00:13:22.035 Absolutely.

00:13:23.692 --> 00:13:25.394 Representation in media and

00:13:25.434 --> 00:13:27.538 beauty is a huge focus of your work,

00:13:27.618 --> 00:13:27.999 I think.

00:13:28.499 --> 00:13:29.921 And what changes have you

00:13:29.961 --> 00:13:30.981 seen over the years and

00:13:31.022 --> 00:13:32.443 what progress do you think

00:13:32.484 --> 00:13:37.029 still needs to be made?

00:13:37.070 --> 00:13:37.931 Big question, I know.

00:13:37.990 --> 00:13:38.971 Yeah, good question.

00:13:39.091 --> 00:13:40.653 I mean, I...

00:13:45.811 --> 00:13:47.254 Represent yeah, I mean representation.

00:13:47.293 --> 00:13:48.736 We still have a lot of work

00:13:48.756 --> 00:13:51.041 to do like a lot of work to do.

00:13:51.120 --> 00:13:52.322 I feel like in every

00:13:52.442 --> 00:13:54.086 department and every aspect

00:13:54.246 --> 00:13:56.892 of like business and creativity and just.

00:14:01.308 --> 00:14:02.649 I am seeing more brands,

00:14:02.710 --> 00:14:03.671 more makeup brands and

00:14:03.730 --> 00:14:05.371 skincare brands becoming

00:14:05.491 --> 00:14:09.335 more inclusive with how

00:14:09.414 --> 00:14:10.336 they're marketing and who

00:14:10.355 --> 00:14:11.336 they're marketing to.

00:14:13.578 --> 00:14:14.599 And I was actually lucky

00:14:14.619 --> 00:14:16.000 enough to be part of a

00:14:16.041 --> 00:14:16.900 makeup brand called It

00:14:16.941 --> 00:14:19.322 Cosmetics where that was a

00:14:19.363 --> 00:14:20.703 big push of their latest

00:14:20.724 --> 00:14:22.765 campaign for their CC cream was having...

00:14:23.666 --> 00:14:24.547 a little bit more of

00:14:24.846 --> 00:14:26.187 inclusivity in their models.

00:14:27.227 --> 00:14:28.609 And so you can actually see

00:14:28.629 --> 00:14:30.049 my face in Sephora and Ulta.

00:14:30.070 --> 00:14:32.951 I know, I love it.

00:14:33.312 --> 00:14:33.611 And, you know,

00:14:33.631 --> 00:14:35.013 like I haven't seen that before.

00:14:35.773 --> 00:14:36.894 And I think IT Cosmetics

00:14:36.974 --> 00:14:38.094 actually did something

00:14:38.313 --> 00:14:39.975 similar maybe a few years ago,

00:14:40.535 --> 00:14:42.716 maybe not as big of a scale, but like,

00:14:43.586 --> 00:14:44.589 I'm hearing more and more

00:14:44.609 --> 00:14:45.730 from makeup and skincare

00:14:45.750 --> 00:14:47.854 brands that this next push

00:14:47.933 --> 00:14:51.099 within beauty industry is

00:14:51.480 --> 00:14:52.480 facial differences.

00:14:54.684 --> 00:14:58.327 I think within the media and film industry,

00:14:58.388 --> 00:15:00.068 disability is the next push.

00:15:01.090 --> 00:15:02.530 That's what I have been hearing from.

00:15:02.571 --> 00:15:04.373 I'm part of the SAG Disability Committee,

00:15:04.452 --> 00:15:06.033 and being as a producer,

00:15:06.274 --> 00:15:07.875 I do ask around a lot of these questions.

00:15:09.056 --> 00:15:10.157 But it's still so niche,

00:15:10.177 --> 00:15:11.918 and it's still so incredibly difficult.

00:15:12.999 --> 00:15:14.039 You really have to have a

00:15:14.120 --> 00:15:16.022 brand that really believes in that.

00:15:16.062 --> 00:15:18.423 You really have to have a producer that...

00:15:19.344 --> 00:15:21.184 you know has some type of

00:15:21.284 --> 00:15:22.565 personal experience even if

00:15:22.644 --> 00:15:23.384 it's just within an

00:15:23.445 --> 00:15:24.725 extension of somebody else

00:15:24.785 --> 00:15:29.408 like they're it's like the

00:15:29.427 --> 00:15:30.927 the door is opening for the

00:15:30.988 --> 00:15:33.168 conversation to be had so

00:15:33.208 --> 00:15:34.009 much more and I think the

00:15:34.048 --> 00:15:35.809 conversation has is being

00:15:35.850 --> 00:15:38.270 taken more seriously um

00:15:39.360 --> 00:15:41.364 But yeah, I think the work is just,

00:15:42.304 --> 00:15:43.606 I don't think it's any easier,

00:15:43.726 --> 00:15:44.447 to be honest.

00:15:45.269 --> 00:15:46.490 We have these doors open for

00:15:46.530 --> 00:15:47.451 these conversations,

00:15:47.471 --> 00:15:48.413 but then you see all of

00:15:48.453 --> 00:15:49.774 these DEI policies and

00:15:49.815 --> 00:15:51.477 initiatives that are rolling back.

00:15:53.100 --> 00:15:54.440 You see that the disability

00:15:54.480 --> 00:15:57.361 community is very much one

00:15:57.402 --> 00:15:58.523 of the marginalized

00:15:58.562 --> 00:16:01.945 communities that is being attacked,

00:16:02.065 --> 00:16:02.725 essentially,

00:16:02.865 --> 00:16:04.005 as far as their rights and

00:16:04.025 --> 00:16:04.886 their benefits.

00:16:06.388 --> 00:16:07.509 We have discrimination

00:16:07.568 --> 00:16:08.808 policies in place for a

00:16:08.869 --> 00:16:10.370 very specific reason,

00:16:10.770 --> 00:16:11.910 and people with visible

00:16:11.951 --> 00:16:13.471 differences experience that

00:16:13.572 --> 00:16:14.533 every single day,

00:16:14.572 --> 00:16:15.653 and they do experience that

00:16:15.693 --> 00:16:17.315 in their workplace and our opportunities.

00:16:18.394 --> 00:16:20.577 The fight, I mean, if anything,

00:16:20.618 --> 00:16:22.320 I think is probably even stronger.

00:16:25.003 --> 00:16:26.825 So I think it's just,

00:16:27.605 --> 00:16:28.866 I don't really know all

00:16:28.907 --> 00:16:29.687 that it would take.

00:16:29.748 --> 00:16:31.791 I think it would take so incredibly much,

00:16:31.870 --> 00:16:33.471 but seeing more and more

00:16:33.552 --> 00:16:37.056 people advocate in their respected space.

00:16:38.431 --> 00:16:40.932 is, I think, the first best step.

00:16:41.734 --> 00:16:42.735 We're talking about it.

00:16:43.034 --> 00:16:46.277 We're sharing about the information,

00:16:47.498 --> 00:16:49.139 the experiences that we deal with,

00:16:49.159 --> 00:16:50.780 the help that we need from the community.

00:16:50.841 --> 00:16:52.361 We're sharing about this on social media.

00:16:52.381 --> 00:16:53.263 People are becoming more

00:16:53.302 --> 00:16:55.063 aware of our struggles

00:16:56.725 --> 00:16:58.307 while also trying to

00:16:58.386 --> 00:16:59.947 advocate for those opportunities.

00:17:01.288 --> 00:17:03.090 there are those people that

00:17:03.350 --> 00:17:04.691 have those resources that

00:17:04.750 --> 00:17:05.912 have that funding and that

00:17:06.031 --> 00:17:07.333 have that passion and that

00:17:07.393 --> 00:17:08.933 intention to create those

00:17:08.973 --> 00:17:10.054 opportunities for people

00:17:10.074 --> 00:17:12.556 like us there's just you

00:17:12.576 --> 00:17:14.876 know not as many people as

00:17:14.916 --> 00:17:16.337 we would hope and now that like

00:17:16.909 --> 00:17:18.130 these challenges that they

00:17:18.250 --> 00:17:19.511 even have to now face when

00:17:19.531 --> 00:17:20.432 they're just trying to do

00:17:20.492 --> 00:17:23.816 something good um it's it's

00:17:24.016 --> 00:17:25.438 it's it's hard but you know

00:17:25.518 --> 00:17:26.719 we we just keep pushing and

00:17:26.759 --> 00:17:28.980 we keep got this project

00:17:29.040 --> 00:17:29.961 we've got you know a slate

00:17:29.981 --> 00:17:31.083 of feature films that we're

00:17:31.123 --> 00:17:32.585 working on in TV series

00:17:32.605 --> 00:17:33.405 where the roles are

00:17:33.625 --> 00:17:36.228 incredibly inclusive and and

00:17:36.307 --> 00:17:38.269 fun um and I know people

00:17:38.289 --> 00:17:39.330 there are people out there

00:17:39.351 --> 00:17:41.011 that will fund it it's I'm

00:17:41.051 --> 00:17:42.113 not gonna knock on any

00:17:42.173 --> 00:17:43.874 studio doors though like I

00:17:43.933 --> 00:17:44.835 know where my avenue is

00:17:44.855 --> 00:17:45.675 gonna be it's gonna be

00:17:45.715 --> 00:17:46.997 completely private funding

00:17:47.037 --> 00:17:48.076 where someone who believes

00:17:48.096 --> 00:17:49.258 in that message who wants

00:17:49.278 --> 00:17:50.298 to see that message come

00:17:50.378 --> 00:17:51.960 out there and then once

00:17:51.980 --> 00:17:53.321 studios see the success

00:17:53.342 --> 00:17:53.902 because everything's

00:17:53.942 --> 00:17:55.722 business once they see it's

00:17:55.782 --> 00:17:57.144 less of a risk assessment

00:17:57.224 --> 00:17:58.865 on their end then someone

00:17:58.905 --> 00:17:59.605 might you know you

00:18:00.406 --> 00:18:01.366 come on board and come

00:18:01.406 --> 00:18:02.488 behind and now we can make

00:18:02.528 --> 00:18:03.667 it more of a bigger message

00:18:03.708 --> 00:18:04.607 but it's getting to that

00:18:04.647 --> 00:18:05.688 point which is always the

00:18:05.788 --> 00:18:08.929 most difficult um but we're

00:18:08.949 --> 00:18:11.170 getting there yeah I think

00:18:11.230 --> 00:18:12.890 two points two thoughts I

00:18:12.930 --> 00:18:13.930 had while you were talking

00:18:13.970 --> 00:18:15.871 is one is that um it is

00:18:16.550 --> 00:18:17.790 definitely a little

00:18:18.510 --> 00:18:20.791 nerve-wracking or even scary the

00:18:21.913 --> 00:18:23.354 potential of the DEI

00:18:23.414 --> 00:18:24.775 rollback and what that's

00:18:24.815 --> 00:18:26.736 going to mean for people

00:18:26.776 --> 00:18:29.036 with disabilities and facial differences.

00:18:29.096 --> 00:18:30.856 And also,

00:18:31.096 --> 00:18:33.178 I think that the other thing I

00:18:33.198 --> 00:18:34.218 think a lot about is that

00:18:34.278 --> 00:18:36.778 we're not quite part of the

00:18:36.999 --> 00:18:39.220 bigger conversation on

00:18:39.319 --> 00:18:41.400 disability and differences yet.

00:18:42.280 --> 00:18:43.500 But I feel like we're

00:18:44.278 --> 00:18:45.459 breaking for a little bit.

00:18:45.519 --> 00:18:46.880 Like I think this, as you said,

00:18:46.900 --> 00:18:48.099 there's still a lot of work

00:18:48.119 --> 00:18:50.642 to be done in this field.

00:18:50.721 --> 00:18:53.242 And I think also not a lot

00:18:53.262 --> 00:18:55.243 of people know about facial

00:18:55.263 --> 00:18:57.306 differences or clasps or

00:18:57.405 --> 00:18:58.605 craniofacial differences.

00:18:59.146 --> 00:19:00.086 And I think so,

00:19:01.647 --> 00:19:03.108 I think awareness and

00:19:03.648 --> 00:19:07.332 advocacy is so important in doing that.

00:19:07.372 --> 00:19:08.051 But I feel like it's

00:19:08.112 --> 00:19:09.413 happening much more than

00:19:09.593 --> 00:19:10.973 when I was growing up for sure.

00:19:12.021 --> 00:19:13.702 Definitely.

00:19:13.883 --> 00:19:16.244 Yeah, a hundred percent.

00:19:16.265 --> 00:19:17.006 To our audience,

00:19:17.066 --> 00:19:18.247 I hope you're enjoying this

00:19:18.307 --> 00:19:20.048 episode of My Face, My Story.

00:19:20.249 --> 00:19:21.249 Whether it's your first time

00:19:21.288 --> 00:19:22.410 joining us or you've been

00:19:22.430 --> 00:19:23.631 with us since the beginning,

00:19:24.211 --> 00:19:25.452 make sure you're subscribed

00:19:25.512 --> 00:19:26.634 to our YouTube and Apple

00:19:26.673 --> 00:19:28.454 podcast channels and sign

00:19:28.494 --> 00:19:29.776 up for our mailing list at

00:19:29.855 --> 00:19:33.798 myface.org slash my story.

00:19:33.838 --> 00:19:34.119 So

00:19:35.944 --> 00:19:38.230 How do you navigate the

00:19:38.270 --> 00:19:40.076 challenges of working in the fashion,

00:19:40.115 --> 00:19:41.700 film and beauty industries

00:19:41.740 --> 00:19:43.684 while advocating for inclusivity?

00:19:45.892 --> 00:19:47.752 Um, you know, so I,

00:19:47.772 --> 00:19:50.494 I just signed with Zebedee or ZBD.

00:19:52.695 --> 00:19:55.178 I think it was the beginning of twenty,

00:19:55.377 --> 00:19:57.159 was it twenty, twenty four?

00:19:57.179 --> 00:19:58.200 Yeah, it was just, you know, so it's,

00:19:58.319 --> 00:19:59.140 it's still pretty recent.

00:19:59.780 --> 00:20:01.422 Um, prior to that, you know,

00:20:01.461 --> 00:20:02.623 it was whenever,

00:20:02.722 --> 00:20:04.324 whatever gigs I could get, you know,

00:20:04.344 --> 00:20:04.923 on my own.

00:20:04.983 --> 00:20:06.984 And even now it's usually

00:20:07.025 --> 00:20:08.766 brands and companies that are, that are,

00:20:08.846 --> 00:20:10.426 you know, they go to a company like ZBD,

00:20:10.446 --> 00:20:10.667 which

00:20:11.748 --> 00:20:13.848 represents mainly different

00:20:13.888 --> 00:20:16.670 inclusive types of models

00:20:16.710 --> 00:20:18.211 like so they're obviously

00:20:18.270 --> 00:20:19.651 going for that type of look

00:20:19.671 --> 00:20:21.471 and that creative so it

00:20:21.491 --> 00:20:22.811 doesn't feel like you know

00:20:22.832 --> 00:20:24.432 there's a lot of work to

00:20:24.492 --> 00:20:25.814 push for advocacy when the

00:20:25.834 --> 00:20:26.814 brands already kind of come

00:20:27.074 --> 00:20:27.594 coming for you

00:20:29.674 --> 00:20:30.935 But when I would reach out

00:20:30.996 --> 00:20:32.498 to makeup companies,

00:20:33.698 --> 00:20:36.119 kind of cold email with sponsorships,

00:20:36.140 --> 00:20:37.721 with social media sponsorships,

00:20:39.563 --> 00:20:40.544 going with companies where

00:20:40.564 --> 00:20:41.724 their messaging was already

00:20:41.785 --> 00:20:43.185 in lined with differences,

00:20:43.546 --> 00:20:44.606 but didn't have any models

00:20:44.646 --> 00:20:45.528 to represent that.

00:20:46.228 --> 00:20:47.568 And that would definitely be

00:20:47.588 --> 00:20:49.530 my pitch is to kind of be like, hey,

00:20:49.550 --> 00:20:50.030 if you're gonna be

00:20:50.070 --> 00:20:51.152 representing or say that

00:20:51.172 --> 00:20:53.233 you represent these types of people,

00:20:53.273 --> 00:20:54.134 then you really need to

00:20:54.174 --> 00:20:55.435 represent these types of people.

00:20:56.256 --> 00:20:58.519 um sometimes it was oh wow

00:20:58.538 --> 00:20:59.339 you're absolutely right we

00:20:59.380 --> 00:21:00.181 would love to actually do a

00:21:00.221 --> 00:21:01.402 sponsorship with you and

00:21:01.541 --> 00:21:03.223 I'm the first you know

00:21:03.585 --> 00:21:05.307 facially different type of

00:21:05.346 --> 00:21:06.268 model that they've done any

00:21:06.307 --> 00:21:08.049 type of work with others

00:21:08.190 --> 00:21:09.751 where that's just not where

00:21:10.792 --> 00:21:12.714 their marketing and focus

00:21:12.734 --> 00:21:14.757 is is quite at um

00:21:15.805 --> 00:21:19.146 So it's a handful of things.

00:21:20.107 --> 00:21:21.347 But the brands that are

00:21:21.428 --> 00:21:22.989 somewhat interested, like at Cosmetics,

00:21:23.009 --> 00:21:24.150 when they come to us

00:21:24.210 --> 00:21:26.451 looking for inclusive models, oh,

00:21:26.832 --> 00:21:27.551 I'm right there.

00:21:27.692 --> 00:21:28.952 Go into the social media

00:21:29.393 --> 00:21:32.154 person or any type of

00:21:32.535 --> 00:21:34.115 creative producer where I'm like,

00:21:34.135 --> 00:21:35.076 how do we make this bigger?

00:21:35.517 --> 00:21:37.298 How do we have a bigger

00:21:37.518 --> 00:21:39.459 lasting relationship?

00:21:39.519 --> 00:21:40.599 And I'm not just talking me.

00:21:40.640 --> 00:21:41.820 I'm not just talking birthmarks.

00:21:41.881 --> 00:21:43.481 I'm talking X, Y, and Z.

00:21:44.321 --> 00:21:45.482 Um, how do we,

00:21:45.643 --> 00:21:47.144 how do we do a campaign together?

00:21:47.203 --> 00:21:48.884 Like it's, it's how to, it's,

00:21:48.964 --> 00:21:49.865 I'm always trying to look

00:21:49.905 --> 00:21:50.885 for how do we make this a

00:21:50.925 --> 00:21:52.287 more lasting relationship?

00:21:52.346 --> 00:21:53.387 It's not just off.

00:21:53.448 --> 00:21:54.769 I do think I have done

00:21:54.788 --> 00:21:56.509 things for free just to get

00:21:56.569 --> 00:21:57.570 my foot in the door with

00:21:57.590 --> 00:21:58.971 the brand to just show, Hey,

00:22:00.011 --> 00:22:01.294 This is how well it can go.

00:22:01.374 --> 00:22:02.434 This is how well it can do.

00:22:03.756 --> 00:22:07.701 Here's just a little taste

00:22:07.901 --> 00:22:10.222 of opening a door into

00:22:11.144 --> 00:22:12.945 having a market of specifically,

00:22:13.366 --> 00:22:15.829 eight hundred new million customers.

00:22:16.329 --> 00:22:17.211 There's over eight hundred

00:22:17.230 --> 00:22:18.692 million people with birthmarks.

00:22:19.292 --> 00:22:20.212 over twenty four million

00:22:20.252 --> 00:22:21.012 people in the world with

00:22:21.053 --> 00:22:22.273 propion stains that's a

00:22:22.314 --> 00:22:23.894 really big open market that

00:22:23.953 --> 00:22:25.054 no one's really I have no

00:22:25.134 --> 00:22:28.015 idea birthmarks you know

00:22:28.035 --> 00:22:29.134 I'm not even talking about

00:22:29.836 --> 00:22:30.935 all craniofacial

00:22:31.316 --> 00:22:34.076 differences and I think

00:22:34.176 --> 00:22:35.676 it's kind of just I try to

00:22:35.717 --> 00:22:37.037 present it more in that way

00:22:37.116 --> 00:22:37.777 just in more on their

00:22:37.817 --> 00:22:38.958 language of like this is

00:22:39.038 --> 00:22:40.278 here's a business model and

00:22:40.317 --> 00:22:41.738 here's some numbers that

00:22:41.758 --> 00:22:43.679 you're missing out on and

00:22:44.818 --> 00:22:46.640 It's also creating projects

00:22:47.520 --> 00:22:50.282 and trying to get into new avenues.

00:22:51.103 --> 00:22:52.744 I've created a pitch for

00:22:52.765 --> 00:22:54.266 Mattel for Birthmark Barbie

00:22:54.326 --> 00:22:55.026 and trying to get

00:22:55.066 --> 00:22:56.527 representation and advocacy

00:22:56.547 --> 00:22:58.989 within that space,

00:23:00.250 --> 00:23:01.349 trying to get representation,

00:23:01.411 --> 00:23:02.310 advocacy in my own space

00:23:02.351 --> 00:23:03.471 that I work in within, you know,

00:23:03.731 --> 00:23:05.272 films and producing and

00:23:05.313 --> 00:23:06.593 creating a slate of films

00:23:06.692 --> 00:23:08.554 and finally have a roster

00:23:08.713 --> 00:23:09.973 of individuals where I can

00:23:10.074 --> 00:23:11.094 actually take this to and

00:23:11.134 --> 00:23:11.835 something could actually

00:23:11.855 --> 00:23:14.855 happen successfully with fingers crossed.

00:23:15.855 --> 00:23:16.836 So there's there's a lot of

00:23:16.895 --> 00:23:19.217 projects and avenues where in books,

00:23:19.297 --> 00:23:19.557 you know,

00:23:19.596 --> 00:23:21.857 different spaces that birthmark emojis,

00:23:21.938 --> 00:23:22.097 you know,

00:23:22.137 --> 00:23:23.038 facially different birthmark

00:23:23.057 --> 00:23:25.019 emojis where we submitted,

00:23:25.219 --> 00:23:25.979 they all got denied.

00:23:26.838 --> 00:23:27.500 But so we're working.

00:23:27.519 --> 00:23:27.700 Yeah.

00:23:29.099 --> 00:23:30.861 That would be amazing to have emojis.

00:23:30.961 --> 00:23:32.481 Yeah, right.

00:23:33.022 --> 00:23:33.323 Yeah.

00:23:33.343 --> 00:23:35.805 So it's, it's seeing kind of, you know,

00:23:36.005 --> 00:23:37.945 where it lacks, which is everywhere,

00:23:38.066 --> 00:23:39.186 and just seeing where I can

00:23:39.227 --> 00:23:41.488 personally tap into where I

00:23:41.509 --> 00:23:42.409 have expertise.

00:23:43.109 --> 00:23:44.369 But that that also extends

00:23:44.390 --> 00:23:46.011 to medical and physical.

00:23:46.872 --> 00:23:48.073 you know actual like

00:23:48.173 --> 00:23:49.334 policies and just

00:23:49.453 --> 00:23:50.894 discrimination policies and

00:23:51.835 --> 00:23:53.855 going to the the medical

00:23:53.875 --> 00:23:54.836 boards and having a bit of

00:23:54.856 --> 00:23:56.798 a refreshed actual medical

00:23:56.857 --> 00:23:58.219 model and one how we

00:23:58.298 --> 00:23:59.920 educate people about facial

00:23:59.940 --> 00:24:00.880 differences or just you

00:24:00.900 --> 00:24:01.961 know really differences in

00:24:02.000 --> 00:24:03.662 general but facial

00:24:03.682 --> 00:24:04.962 differences is a is a

00:24:05.002 --> 00:24:05.982 really big thing and I

00:24:06.083 --> 00:24:08.124 actually talked to um

00:24:09.265 --> 00:24:10.425 I was doing this commercial

00:24:10.486 --> 00:24:12.267 for figs it's a high-end

00:24:12.406 --> 00:24:14.067 scrub company and so we had

00:24:14.127 --> 00:24:15.709 it was twelve plastic

00:24:15.749 --> 00:24:17.028 surgeons and doctors and

00:24:17.068 --> 00:24:18.609 nurses and all in all these

00:24:18.630 --> 00:24:19.371 different fields and there

00:24:19.391 --> 00:24:20.290 was a few dermatologists

00:24:20.310 --> 00:24:22.031 there and I asked them just

00:24:22.071 --> 00:24:22.833 like hey I'm just so

00:24:22.873 --> 00:24:24.713 curious so like currently

00:24:24.753 --> 00:24:25.513 erwin when you were in

00:24:25.594 --> 00:24:28.355 school like what was the

00:24:28.375 --> 00:24:29.296 the educate the medical

00:24:29.336 --> 00:24:30.797 education that you got off

00:24:30.876 --> 00:24:31.998 of birthmark she obviously

00:24:32.018 --> 00:24:32.837 knew what her birthmark was

00:24:32.857 --> 00:24:33.898 because she's dermatologist

00:24:34.278 --> 00:24:35.880 but she was like you will laugh and

00:24:36.460 --> 00:24:38.461 We have one thirty minute

00:24:38.500 --> 00:24:40.760 lecture to cover all three

00:24:40.780 --> 00:24:44.021 thousand plus skin conditions.

00:24:46.461 --> 00:24:47.002 And that's it.

00:24:47.502 --> 00:24:47.603 Yeah,

00:24:47.623 --> 00:24:50.242 I guess I keep saying we need to do a

00:24:50.282 --> 00:24:52.344 better job of educating the

00:24:52.403 --> 00:24:53.723 medical community and

00:24:54.223 --> 00:24:55.865 getting in front of them,

00:24:55.884 --> 00:24:57.125 because I remember years ago,

00:24:58.785 --> 00:25:00.226 three or four of us from

00:25:00.266 --> 00:25:01.185 the facial difference

00:25:01.205 --> 00:25:02.726 community actually went

00:25:02.826 --> 00:25:05.067 into a medical school and presented.

00:25:05.750 --> 00:25:07.852 And they said they don't

00:25:07.912 --> 00:25:09.053 have that opportunity to

00:25:09.093 --> 00:25:11.933 hear from people themselves

00:25:11.953 --> 00:25:12.534 because they're just

00:25:12.734 --> 00:25:14.174 reading it in a textbook.

00:25:14.756 --> 00:25:16.556 And that experience just was

00:25:16.655 --> 00:25:17.757 life changing for them.

00:25:17.777 --> 00:25:19.718 And I just feel like every time I do it,

00:25:19.778 --> 00:25:20.018 I'm like,

00:25:20.057 --> 00:25:21.159 we need to do more of this

00:25:21.199 --> 00:25:24.740 because I think it's so important,

00:25:24.780 --> 00:25:25.701 especially getting them

00:25:25.740 --> 00:25:27.402 when they're just starting out.

00:25:28.343 --> 00:25:29.923 So even just to know what

00:25:29.943 --> 00:25:31.585 the proper terminology is

00:25:31.904 --> 00:25:34.067 or what words to use, what not to use,

00:25:34.688 --> 00:25:35.788 and thinking about that

00:25:35.848 --> 00:25:37.250 person as a human being

00:25:38.391 --> 00:25:40.932 beyond just the textbook person.

00:25:41.252 --> 00:25:43.914 And so I think that I would

00:25:43.976 --> 00:25:46.217 love to do more in the medical community.

00:25:46.738 --> 00:25:46.958 Yeah.

00:25:49.619 --> 00:25:52.182 So what advice would you

00:25:52.222 --> 00:25:53.624 give to someone struggling

00:25:53.644 --> 00:25:55.144 with self acceptance due to

00:25:55.224 --> 00:25:56.165 their visible difference?

00:25:56.205 --> 00:25:57.968 And maybe what would you say

00:25:58.008 --> 00:26:00.730 if they wanted to do what

00:26:00.750 --> 00:26:03.333 you're doing and get out

00:26:03.353 --> 00:26:04.994 there and do acting or

00:26:05.174 --> 00:26:07.136 social media in a big way?

00:26:07.176 --> 00:26:08.377 Like what would you say to them?

00:26:10.266 --> 00:26:15.388 um so much um I think you

00:26:15.409 --> 00:26:16.308 know one of the biggest

00:26:16.328 --> 00:26:17.609 things that took the

00:26:17.650 --> 00:26:18.849 longest for me and it

00:26:18.910 --> 00:26:20.310 seemed the most simplest

00:26:20.351 --> 00:26:20.951 and one of the most

00:26:21.010 --> 00:26:22.432 powerful was just don't

00:26:22.471 --> 00:26:23.913 wait to ask for permission

00:26:23.972 --> 00:26:24.813 no one's going to give it

00:26:24.833 --> 00:26:26.653 to you um you will wait

00:26:26.673 --> 00:26:28.734 your entire life for it um

00:26:31.258 --> 00:26:32.439 start doing the things that

00:26:32.499 --> 00:26:33.479 interest you now.

00:26:33.659 --> 00:26:37.080 Start acting like the person

00:26:37.141 --> 00:26:38.820 who you know that you

00:26:38.961 --> 00:26:40.402 envision yourself to be.

00:26:40.461 --> 00:26:41.261 There's this,

00:26:41.301 --> 00:26:42.782 they call it the Batman effect.

00:26:43.303 --> 00:26:44.604 And I love this.

00:26:44.884 --> 00:26:46.403 And I did this growing up,

00:26:46.785 --> 00:26:47.825 not even knowing this is

00:26:47.865 --> 00:26:48.664 what I was doing.

00:26:48.765 --> 00:26:52.307 But you embody the character

00:26:53.047 --> 00:26:54.428 that you are either

00:26:54.488 --> 00:26:55.968 envisioning or that you

00:26:56.028 --> 00:26:57.828 deep down know that that's who you are.

00:26:58.108 --> 00:26:59.529 You pretend to be

00:27:00.509 --> 00:27:03.491 a character that you are too

00:27:03.531 --> 00:27:05.153 fearful to already kind of

00:27:05.913 --> 00:27:06.815 actually claim.

00:27:06.875 --> 00:27:08.016 So you pretend it.

00:27:08.817 --> 00:27:10.637 And when you pretend to be

00:27:10.678 --> 00:27:12.799 this confident person going

00:27:12.839 --> 00:27:13.740 into the grocery store,

00:27:13.759 --> 00:27:15.281 I'm not going to let anybody bother me.

00:27:16.162 --> 00:27:18.203 I'm this main character from

00:27:18.344 --> 00:27:21.046 this movie and that I really love.

00:27:22.646 --> 00:27:24.108 And I'm going to go and this

00:27:24.148 --> 00:27:25.670 is how I'm going to go do my groceries.

00:27:26.916 --> 00:27:28.959 It works a hundred percent of the time.

00:27:30.339 --> 00:27:31.401 Sometimes you get out of it

00:27:32.082 --> 00:27:33.462 because it kind of will feel silly,

00:27:34.063 --> 00:27:35.744 but you practice it a little bit.

00:27:35.805 --> 00:27:36.625 And before you know it,

00:27:36.645 --> 00:27:38.027 you start becoming that,

00:27:38.186 --> 00:27:39.208 you start embodying those

00:27:39.268 --> 00:27:40.608 actual characteristics and

00:27:40.628 --> 00:27:41.369 those behaviors.

00:27:42.871 --> 00:27:43.711 To an extent.

00:27:43.911 --> 00:27:45.912 But if that's your goal is confidence,

00:27:45.991 --> 00:27:47.593 you will start to embody that.

00:27:47.673 --> 00:27:49.992 So you totally fake it till you make it.

00:27:50.212 --> 00:27:51.513 I think it is one of the

00:27:51.594 --> 00:27:52.874 best psychological tricks

00:27:52.913 --> 00:27:53.733 that one can do.

00:27:54.115 --> 00:27:55.734 I still do it myself to this day.

00:27:56.095 --> 00:27:57.435 I'm not feeling in a great mood.

00:27:57.855 --> 00:27:58.875 I do the Batman effect.

00:27:58.895 --> 00:27:59.635 I love that.

00:27:59.736 --> 00:28:02.997 I love that concept.

00:28:03.057 --> 00:28:03.436 I'm excited.

00:28:03.537 --> 00:28:03.958 Yeah, I know.

00:28:03.978 --> 00:28:04.718 Because it'll...

00:28:06.286 --> 00:28:07.487 Just like an actor, you know,

00:28:07.507 --> 00:28:08.488 the show must go on.

00:28:08.807 --> 00:28:09.929 If the stage rolls up,

00:28:09.969 --> 00:28:11.230 you gotta go on stage.

00:28:11.250 --> 00:28:12.311 You gotta go and pretend to

00:28:12.332 --> 00:28:13.132 be that character.

00:28:13.172 --> 00:28:14.173 So I think it can be really

00:28:14.212 --> 00:28:15.835 great in moments where you

00:28:15.855 --> 00:28:17.536 need to turn it on immediately like that.

00:28:18.037 --> 00:28:20.479 It's great for a gradual, you know,

00:28:21.599 --> 00:28:23.441 results to get to from point

00:28:23.461 --> 00:28:26.462 A to point B. And it really helps,

00:28:26.583 --> 00:28:26.883 I think,

00:28:26.903 --> 00:28:28.584 kind of take away that fear and

00:28:28.604 --> 00:28:29.585 that seriousness,

00:28:29.605 --> 00:28:30.484 because you're just playing,

00:28:30.644 --> 00:28:32.425 you're just in,

00:28:32.445 --> 00:28:33.807 you're pretending to be

00:28:34.407 --> 00:28:36.028 kind of someone else that

00:28:36.048 --> 00:28:38.130 you're able to then do this thing with.

00:28:38.750 --> 00:28:40.010 which can really be helpful

00:28:40.050 --> 00:28:42.592 to then get you to maybe

00:28:43.271 --> 00:28:44.451 outline your difference for

00:28:44.491 --> 00:28:45.232 the first time.

00:28:45.333 --> 00:28:47.532 It might help you go and

00:28:47.573 --> 00:28:49.114 post the photo for the very

00:28:49.173 --> 00:28:50.493 first time to talk about it

00:28:50.513 --> 00:28:51.214 with somebody.

00:28:52.335 --> 00:28:54.476 If you want to be some type

00:28:54.556 --> 00:28:56.936 of – any type of work

00:28:56.957 --> 00:28:58.196 that's going to make you

00:28:58.938 --> 00:29:00.597 stand out in your

00:29:00.637 --> 00:29:04.750 authenticity and not hide –

00:29:03.512 --> 00:29:04.252 I think that's a really,

00:29:04.272 --> 00:29:06.454 really great way to do that.

00:29:06.914 --> 00:29:08.155 And the only other thing

00:29:08.175 --> 00:29:09.676 that I would give advice on

00:29:09.737 --> 00:29:11.057 is that no matter what you do,

00:29:11.096 --> 00:29:11.877 but especially if you're

00:29:11.897 --> 00:29:12.998 going to get into a space

00:29:13.038 --> 00:29:13.638 where you're going to be

00:29:13.679 --> 00:29:15.579 showing yourself to others

00:29:15.619 --> 00:29:18.000 and to the public and want to inspire,

00:29:19.442 --> 00:29:22.644 have you be your only audience.

00:29:22.943 --> 00:29:25.884 and post and talk about and

00:29:25.924 --> 00:29:28.506 do the things that you

00:29:29.086 --> 00:29:31.906 right now would like, would comment on,

00:29:31.946 --> 00:29:33.326 would say, would go, yes,

00:29:33.366 --> 00:29:34.247 I absolutely love this.

00:29:34.287 --> 00:29:35.147 I would watch this.

00:29:35.468 --> 00:29:36.688 Or your younger self would

00:29:36.728 --> 00:29:38.528 feel incredibly inspired,

00:29:38.788 --> 00:29:41.529 would love to see that, would feel X, Y,

00:29:41.549 --> 00:29:43.970 and Z with you doing

00:29:44.109 --> 00:29:45.651 whatever it is that you're doing.

00:29:46.310 --> 00:29:47.571 That takes out all the noise

00:29:47.672 --> 00:29:49.011 of worrying about anybody else.

00:29:49.799 --> 00:29:51.080 anybody else's opinions,

00:29:51.121 --> 00:29:52.801 whether they're known or stranger,

00:29:53.481 --> 00:29:54.823 any doubt that you're going to have.

00:29:54.962 --> 00:29:55.042 Oh,

00:29:55.063 --> 00:29:56.002 I wonder if anybody's going to like this,

00:29:56.022 --> 00:29:56.903 if they're going to find it funny.

00:29:56.963 --> 00:29:58.104 Oh, it's probably really, really stupid.

00:29:58.124 --> 00:30:00.085 Who cares if you get,

00:30:00.224 --> 00:30:01.286 and if maybe your younger

00:30:01.365 --> 00:30:02.326 self would have loved it

00:30:02.365 --> 00:30:03.247 and felt inspired,

00:30:03.967 --> 00:30:05.448 post all the stupid stuff,

00:30:05.647 --> 00:30:06.888 say all the stupid things,

00:30:06.929 --> 00:30:08.449 because if your audience approves,

00:30:08.469 --> 00:30:09.890 which is you at the end of the day,

00:30:10.450 --> 00:30:10.931 you're solid.

00:30:10.951 --> 00:30:13.612 What great advice.

00:30:13.632 --> 00:30:14.372 I have to take this advice.

00:30:14.392 --> 00:30:17.193 I don't know myself.

00:30:17.253 --> 00:30:17.614 Yeah.

00:30:18.455 --> 00:30:19.576 It's a daily practice.

00:30:19.596 --> 00:30:19.676 Yeah.

00:30:19.696 --> 00:30:19.777 Yeah.

00:30:20.196 --> 00:30:20.876 Yeah.

00:30:20.998 --> 00:30:22.478 I love that.

00:30:22.498 --> 00:30:23.318 So what has been one of the

00:30:23.358 --> 00:30:24.259 most meaningful and

00:30:24.319 --> 00:30:25.519 memorable moments in your

00:30:25.559 --> 00:30:27.942 advocacy journey?

00:30:28.061 --> 00:30:28.382 Oh man,

00:30:28.402 --> 00:30:32.243 there's been a lot from moms

00:30:32.284 --> 00:30:33.924 messaging me about their

00:30:34.045 --> 00:30:35.826 daughter and then their

00:30:36.406 --> 00:30:38.067 daughters did second grade,

00:30:38.107 --> 00:30:39.368 their first day for second grade.

00:30:39.808 --> 00:30:41.529 And they ended up, I got this fly.

00:30:41.990 --> 00:30:43.050 It's like a guest star here.

00:30:44.114 --> 00:30:45.215 They'll send me a photo of

00:30:45.276 --> 00:30:46.196 like their birthmarks all

00:30:46.217 --> 00:30:47.258 highlighted for the first

00:30:47.298 --> 00:30:48.839 time ever that they've done

00:30:48.859 --> 00:30:49.901 that out in public.

00:30:50.000 --> 00:30:50.801 And now they're like the

00:30:50.842 --> 00:30:52.063 most popular kid in their

00:30:52.083 --> 00:30:55.626 grade in school to see my

00:30:55.688 --> 00:30:57.630 face in Sephora and Ulta.

00:30:57.750 --> 00:30:58.009 I mean,

00:30:58.190 --> 00:31:00.853 I like I never actually would have

00:31:00.893 --> 00:31:02.055 thought what would have

00:31:02.095 --> 00:31:04.257 happened and be a possibility so that.

00:31:05.253 --> 00:31:06.494 was a huge,

00:31:06.535 --> 00:31:08.616 huge accomplishment and a

00:31:08.656 --> 00:31:10.117 moment that I'll definitely never forget.

00:31:11.679 --> 00:31:13.339 But yeah, there's, there's, it's,

00:31:14.520 --> 00:31:15.560 I think another one too

00:31:15.580 --> 00:31:16.682 that I also just can't,

00:31:16.761 --> 00:31:17.702 I can't get over is just

00:31:17.803 --> 00:31:18.544 meeting other people,

00:31:19.104 --> 00:31:19.703 whether they're in the

00:31:19.723 --> 00:31:21.625 birthmark community or like, you know,

00:31:21.826 --> 00:31:22.727 with my face and the

00:31:22.767 --> 00:31:23.747 craniofacial community,

00:31:23.787 --> 00:31:25.367 which I guess birthmarks and, you know,

00:31:25.387 --> 00:31:26.809 especially on the face, it's kind of,

00:31:26.849 --> 00:31:28.990 they, they fall within that same category,

00:31:29.030 --> 00:31:29.611 but just, yeah,

00:31:29.652 --> 00:31:32.594 meeting other people like us, like it's,

00:31:32.733 --> 00:31:32.933 it's,

00:31:33.653 --> 00:31:35.054 that never gets old.

00:31:35.134 --> 00:31:40.519 That has been one of the most impactful,

00:31:40.720 --> 00:31:45.083 inspirational, most powerful, like family,

00:31:45.183 --> 00:31:48.807 like just those moments mean so, so, so,

00:31:48.846 --> 00:31:49.366 so much.

00:31:49.667 --> 00:31:51.910 Um, so it's, it's, yeah, it's,

00:31:52.009 --> 00:31:53.250 it's been a journey of,

00:31:53.590 --> 00:31:55.833 of all of it being pretty amazing.

00:31:55.873 --> 00:31:56.394 Yeah.

00:31:56.513 --> 00:31:56.673 Yeah.

00:31:57.694 --> 00:31:58.516 I always say,

00:31:58.635 --> 00:32:00.076 and I think it's so true here,

00:32:00.196 --> 00:32:01.176 that there's power in the

00:32:01.196 --> 00:32:02.178 shared story and knowing

00:32:02.198 --> 00:32:03.518 you're not alone and the

00:32:03.557 --> 00:32:04.919 connections you make when

00:32:05.078 --> 00:32:07.519 you share your journey and someone says,

00:32:07.539 --> 00:32:08.721 oh, I totally get it.

00:32:08.820 --> 00:32:09.902 I can understand because

00:32:10.321 --> 00:32:11.241 they're on that same

00:32:11.281 --> 00:32:13.123 journey and it's just so powerful.

00:32:13.624 --> 00:32:16.125 And so that connection that

00:32:16.525 --> 00:32:18.066 other people may not understand,

00:32:18.465 --> 00:32:20.166 they haven't grown up with

00:32:20.186 --> 00:32:21.968 that or experienced it.

00:32:22.810 --> 00:32:23.790 Right.

00:32:23.951 --> 00:32:25.112 So, Paige,

00:32:25.152 --> 00:32:27.551 you are the host this year of My

00:32:27.571 --> 00:32:30.073 Faith Celebrates Gala on June fifth.

00:32:30.292 --> 00:32:32.212 So exciting in New York City.

00:32:33.273 --> 00:32:34.773 And so what does that mean

00:32:34.794 --> 00:32:36.314 to you to do that?

00:32:37.013 --> 00:32:43.316 Oh, man, that means like more.

00:32:43.395 --> 00:32:45.195 I mean, yeah, it really means a lot.

00:32:45.296 --> 00:32:47.317 I'm very, very honored to be able to

00:32:48.751 --> 00:32:50.674 just even speak in a space

00:32:50.714 --> 00:32:51.797 like that with the

00:32:51.836 --> 00:32:53.419 individuals that are gonna be there.

00:32:53.599 --> 00:32:53.799 I mean,

00:32:53.819 --> 00:32:55.201 there's some powerhouses that are

00:32:55.221 --> 00:32:55.923 gonna be there,

00:32:57.105 --> 00:32:58.287 people that I look up to

00:32:58.307 --> 00:32:59.588 that I'm inspired by.

00:33:00.691 --> 00:33:02.073 So to even kind of like,

00:33:03.279 --> 00:33:05.280 announce anything and host anything.

00:33:05.661 --> 00:33:06.521 It feels really,

00:33:06.561 --> 00:33:07.842 really fun and really incredible.

00:33:09.163 --> 00:33:12.023 I'm ecstatic to just see

00:33:12.064 --> 00:33:13.184 people that I've already met there,

00:33:13.545 --> 00:33:14.846 meet new people that I haven't met there.

00:33:14.865 --> 00:33:15.586 Because again,

00:33:15.665 --> 00:33:16.906 meeting communities like this,

00:33:17.366 --> 00:33:19.067 there's nothing else like it.

00:33:19.087 --> 00:33:20.528 You don't walk into a room

00:33:21.534 --> 00:33:23.795 feeling like this in any other space.

00:33:24.115 --> 00:33:27.017 It's where you actually feel

00:33:27.096 --> 00:33:27.916 seen and heard and

00:33:27.957 --> 00:33:29.077 understood and you know

00:33:29.097 --> 00:33:30.538 that people are looking at

00:33:30.577 --> 00:33:32.919 you in such a different way.

00:33:36.201 --> 00:33:37.642 That's a feeling that I've

00:33:37.682 --> 00:33:40.282 craved for so long growing

00:33:40.383 --> 00:33:41.222 up because I never,

00:33:41.282 --> 00:33:42.923 never got that just until a

00:33:42.963 --> 00:33:43.664 few years ago.

00:33:44.005 --> 00:33:44.105 Yeah.

00:33:45.586 --> 00:33:47.067 So being in that space alone

00:33:47.167 --> 00:33:48.789 is just probably what I'm

00:33:48.829 --> 00:33:49.911 most excited about.

00:33:49.991 --> 00:33:51.693 But to just, yeah,

00:33:51.713 --> 00:33:53.055 to kind of just soak up the

00:33:53.095 --> 00:33:55.097 inspiration from everybody

00:33:56.900 --> 00:33:58.622 is what I think is going to mean so,

00:33:58.682 --> 00:33:59.222 so much to me.

00:33:59.242 --> 00:34:02.165 Yeah, it's one of my favorite evenings,

00:34:02.246 --> 00:34:02.846 I can say that.

00:34:03.334 --> 00:34:04.575 And we are giving the

00:34:04.654 --> 00:34:06.836 Courage Award to Adam Pearson,

00:34:07.355 --> 00:34:09.117 who starred in A Different Man.

00:34:09.177 --> 00:34:11.297 So that's also very exciting.

00:34:11.898 --> 00:34:13.039 Very, very exciting.

00:34:13.059 --> 00:34:14.739 I'm a huge fan of Adam's,

00:34:14.760 --> 00:34:16.721 so I'm so excited to meet

00:34:16.780 --> 00:34:18.581 him after his autograph, the whole thing.

00:34:18.762 --> 00:34:19.521 I know, right?

00:34:19.922 --> 00:34:20.561 Yeah.

00:34:20.862 --> 00:34:22.463 If you'll have time for me, you know.

00:34:23.643 --> 00:34:24.184 Exactly.

00:34:24.985 --> 00:34:25.065 So...

00:34:28.081 --> 00:34:29.541 How can people support

00:34:29.623 --> 00:34:31.164 greater representation of

00:34:31.204 --> 00:34:32.664 facial differences in media

00:34:32.684 --> 00:34:35.648 and everyday life?

00:34:35.728 --> 00:34:36.027 Yeah,

00:34:36.068 --> 00:34:39.331 support your influencers and your

00:34:39.371 --> 00:34:40.833 advocates on social media

00:34:40.873 --> 00:34:41.893 that are doing this,

00:34:41.954 --> 00:34:44.135 that are speaking about this.

00:34:44.695 --> 00:34:46.077 Having a platform,

00:34:47.338 --> 00:34:50.382 having an audience for us is huge.

00:34:50.702 --> 00:34:52.963 It's because brands still look at that for

00:34:54.364 --> 00:34:55.824 opportunities and and for

00:34:55.846 --> 00:34:56.746 collaboration and for

00:34:56.786 --> 00:34:58.545 sponsorship producers they

00:34:58.585 --> 00:34:59.365 still look at that when

00:34:59.385 --> 00:35:00.507 they want to fund a project

00:35:00.547 --> 00:35:01.367 okay well who's in it how

00:35:01.387 --> 00:35:02.306 many following do they have

00:35:02.567 --> 00:35:04.708 it seems silly but and not

00:35:04.827 --> 00:35:05.947 all people work that way

00:35:06.027 --> 00:35:07.628 but a lot of people still

00:35:07.849 --> 00:35:09.369 do okay well what what kind

00:35:09.389 --> 00:35:10.750 of audience do you have if

00:35:10.769 --> 00:35:11.869 you have a voice well how

00:35:11.909 --> 00:35:12.909 many people are actually

00:35:12.989 --> 00:35:13.730 following and wanting to

00:35:13.769 --> 00:35:16.070 hear what you have to say so follow them

00:35:16.615 --> 00:35:18.237 like and comment their posts,

00:35:18.257 --> 00:35:19.117 share their posts,

00:35:19.177 --> 00:35:21.298 help them create a community,

00:35:21.338 --> 00:35:23.280 help them create a support,

00:35:23.320 --> 00:35:24.641 because that helps open up

00:35:24.721 --> 00:35:26.342 so many doors for us to

00:35:26.382 --> 00:35:27.842 have access to be able to

00:35:27.882 --> 00:35:29.202 speak in other places so

00:35:29.242 --> 00:35:32.244 that our faces and bodies can be seen in,

00:35:32.485 --> 00:35:33.204 you know,

00:35:33.244 --> 00:35:34.505 the clothes that we wear and the

00:35:34.525 --> 00:35:35.427 movies that we watch,

00:35:35.467 --> 00:35:36.206 the books that we read.

00:35:39.199 --> 00:35:40.659 Yeah, I would say that the most.

00:35:40.699 --> 00:35:41.400 I mean, of course,

00:35:41.641 --> 00:35:43.682 foundations need donations

00:35:43.983 --> 00:35:45.643 to keep with the initiatives.

00:35:45.764 --> 00:35:46.905 If people ever feel like

00:35:46.925 --> 00:35:48.206 they've got money to spend,

00:35:49.166 --> 00:35:51.489 we will absolutely, you know,

00:35:51.748 --> 00:35:53.331 it goes to amazing causes.

00:35:53.371 --> 00:35:54.891 It goes to people who really need it.

00:35:54.931 --> 00:35:55.833 And it's a community that

00:35:55.873 --> 00:35:57.233 we're trying to create

00:35:57.273 --> 00:35:58.275 representation for.

00:35:59.896 --> 00:36:00.635 But I, you know,

00:36:00.717 --> 00:36:01.456 I think money is always a

00:36:01.916 --> 00:36:02.918 hard subject for a lot of

00:36:02.938 --> 00:36:03.579 people these days.

00:36:03.599 --> 00:36:05.280 So I would just say go support,

00:36:06.041 --> 00:36:08.483 just go follow these influencers and

00:36:09.963 --> 00:36:11.164 you know, like, like what they're,

00:36:11.224 --> 00:36:12.085 what they're fighting for.

00:36:12.626 --> 00:36:13.427 And that actually helps a

00:36:13.467 --> 00:36:14.547 lot more than I think a lot

00:36:14.568 --> 00:36:15.228 of people realize.

00:36:16.869 --> 00:36:17.530 Absolutely.

00:36:18.711 --> 00:36:20.454 So you touched on this before,

00:36:20.514 --> 00:36:21.474 but what would you say to

00:36:21.494 --> 00:36:22.637 your younger self knowing

00:36:22.657 --> 00:36:23.478 what you know today?

00:36:26.099 --> 00:36:26.300 Um,

00:36:30.822 --> 00:36:33.344 I think your cat has an opinion on that.

00:36:33.364 --> 00:36:34.085 My cat has a few things, yeah.

00:36:34.105 --> 00:36:35.445 He's got a few ideas.

00:36:36.146 --> 00:36:40.590 Yeah, I mean, I'll say this again,

00:36:40.610 --> 00:36:41.550 because it was just such a

00:36:41.610 --> 00:36:42.391 big moment for me,

00:36:42.431 --> 00:36:44.373 but just to don't ask for permission.

00:36:45.414 --> 00:36:46.394 It really felt like the

00:36:46.554 --> 00:36:47.815 silliest thing when I kind

00:36:47.856 --> 00:36:48.737 of figured that out.

00:36:50.338 --> 00:36:51.780 But also, like, you know, without judgment,

00:36:51.820 --> 00:36:52.480 because I was like, well,

00:36:52.500 --> 00:36:54.181 of course you didn't know

00:36:54.222 --> 00:36:55.282 you had permission to

00:36:57.242 --> 00:36:58.923 stand out and you didn't

00:36:58.943 --> 00:36:59.804 have to just blend in.

00:37:06.393 --> 00:37:08.275 And I think the other thing

00:37:08.335 --> 00:37:09.436 I would have told her was

00:37:10.097 --> 00:37:12.320 that the uncomfortability

00:37:12.360 --> 00:37:13.702 that you make people feel

00:37:13.742 --> 00:37:15.445 for just existing will never go away.

00:37:17.164 --> 00:37:19.826 to learn which I think you

00:37:19.846 --> 00:37:21.286 know I think you know us in

00:37:21.306 --> 00:37:22.186 the situations that we were

00:37:22.206 --> 00:37:23.268 in I think we were forced

00:37:23.307 --> 00:37:24.527 to learn this pretty

00:37:24.568 --> 00:37:26.608 quickly but there there for

00:37:26.628 --> 00:37:27.869 a while I fought that

00:37:27.909 --> 00:37:29.090 feeling though I thought

00:37:29.150 --> 00:37:32.251 that like that oh I won't

00:37:32.291 --> 00:37:33.333 be surprised next time

00:37:33.393 --> 00:37:34.293 maybe that was the last

00:37:34.333 --> 00:37:36.153 time you know oh well yeah

00:37:36.173 --> 00:37:37.094 it won't come from a doll

00:37:37.195 --> 00:37:38.795 or you know whatever it is um

00:37:39.795 --> 00:37:41.900 And this being surprised and

00:37:42.001 --> 00:37:44.726 having my expectations be

00:37:44.766 --> 00:37:46.409 squashed were always really

00:37:46.449 --> 00:37:48.034 difficult to recover from.

00:37:48.233 --> 00:37:48.414 Yeah.

00:37:49.070 --> 00:37:50.271 So I think that would have

00:37:50.291 --> 00:37:52.711 been learn how to use that

00:37:52.771 --> 00:37:54.072 uncomfortability to your

00:37:54.092 --> 00:37:56.052 advantage a little quicker

00:37:56.293 --> 00:37:59.855 and learn to kind of get

00:37:59.914 --> 00:38:01.416 comfortable with other

00:38:01.456 --> 00:38:02.655 people's uncomfortability.

00:38:02.956 --> 00:38:04.617 And now it's at a point where I'm like,

00:38:04.717 --> 00:38:06.137 I'm really into it,

00:38:06.918 --> 00:38:08.318 maybe a little too much.

00:38:08.739 --> 00:38:10.099 Now I got to kind of learn

00:38:10.119 --> 00:38:11.481 to step back a little bit

00:38:11.501 --> 00:38:12.681 because I feel like I'm

00:38:12.721 --> 00:38:14.422 like this little demon of like,

00:38:14.802 --> 00:38:16.083 Ooh, someone's uncomfortable.

00:38:16.163 --> 00:38:17.623 Like how exciting.

00:38:18.864 --> 00:38:20.744 So I got to tone it back a bit, but those,

00:38:20.764 --> 00:38:21.405 those would have been the

00:38:21.425 --> 00:38:22.166 things I would have told her.

00:38:23.967 --> 00:38:24.947 I love the quote.

00:38:25.007 --> 00:38:26.188 I think it's from wonder why

00:38:26.208 --> 00:38:28.110 blend in when you were born to stand out.

00:38:28.369 --> 00:38:29.469 And somehow that reminds me

00:38:29.489 --> 00:38:30.490 of what you were just saying.

00:38:31.532 --> 00:38:32.612 So who do you see when you

00:38:32.652 --> 00:38:33.592 look in the mirror today?

00:38:35.271 --> 00:38:38.735 Oh man, I see this badass, unapologetic,

00:38:39.376 --> 00:38:44.742 like just like superhero, like woman.

00:38:44.822 --> 00:38:45.063 Yeah.

00:38:45.103 --> 00:38:45.523 I just,

00:38:46.304 --> 00:38:48.186 I see someone who's fun and who's

00:38:48.226 --> 00:38:51.431 like really enjoying themselves and,

00:38:51.672 --> 00:38:52.992 and who they are.

00:38:53.193 --> 00:38:54.014 And, um,

00:38:56.586 --> 00:38:57.827 Yeah, I just see someone who has,

00:38:57.887 --> 00:38:58.588 who would be like really

00:38:58.608 --> 00:38:59.349 fun to hang out with.

00:39:01.110 --> 00:39:03.012 So my last question is,

00:39:03.391 --> 00:39:05.652 what are your dreams for the future?

00:39:06.253 --> 00:39:07.295 And then where can people

00:39:07.335 --> 00:39:08.996 find you on social media or

00:39:09.996 --> 00:39:10.577 anywhere else?

00:39:12.085 --> 00:39:14.007 My ultimate dream would be

00:39:14.088 --> 00:39:16.911 that this is no longer a conversation,

00:39:17.351 --> 00:39:19.693 that this is no longer work

00:39:19.833 --> 00:39:21.275 and initiative and an

00:39:21.315 --> 00:39:22.777 intention that I'm trying to do,

00:39:22.858 --> 00:39:24.179 that inclusivity and

00:39:24.260 --> 00:39:25.981 diversity is something to

00:39:26.021 --> 00:39:26.822 fight for and that

00:39:26.862 --> 00:39:28.003 representation awareness is

00:39:28.023 --> 00:39:29.226 still a thing that we have to make.

00:39:30.065 --> 00:39:31.166 I would just hope that that

00:39:31.427 --> 00:39:33.646 now then exists and I can

00:39:34.108 --> 00:39:36.867 maybe move on to just

00:39:36.927 --> 00:39:38.489 creating normal stories

00:39:39.048 --> 00:39:40.088 that still include us,

00:39:40.128 --> 00:39:41.309 but normal has just kind of

00:39:41.329 --> 00:39:43.431 shifted to what reality truly is.

00:39:45.690 --> 00:39:48.032 But on a small scale, I mean, yeah,

00:39:48.172 --> 00:39:50.452 I would love to see people

00:39:50.472 --> 00:39:52.353 who look like me in my movies.

00:39:52.972 --> 00:39:54.153 I would love to see people

00:39:54.173 --> 00:39:57.514 who look like me in more dolls,

00:39:57.574 --> 00:39:58.355 Barbie dolls,

00:39:59.855 --> 00:40:00.815 on the billboards of the

00:40:00.856 --> 00:40:01.735 clothes that we wear.

00:40:03.936 --> 00:40:06.456 Those are smaller goals,

00:40:06.976 --> 00:40:08.518 but ultimately would just

00:40:08.538 --> 00:40:09.458 be that this conversation

00:40:09.518 --> 00:40:11.239 really doesn't need to be had anymore.

00:40:13.364 --> 00:40:14.786 And yeah, you can find me on Instagram.

00:40:14.826 --> 00:40:16.606 I'm on TikTok and YouTube,

00:40:16.626 --> 00:40:17.807 but my main platform is

00:40:17.847 --> 00:40:19.068 Instagram at flawless

00:40:19.188 --> 00:40:20.670 underscore effect with an

00:40:20.871 --> 00:40:23.452 A. Website's kind of being

00:40:23.492 --> 00:40:24.492 redone at the moment.

00:40:24.512 --> 00:40:28.496 So I'm the most active on the IG.

00:40:28.596 --> 00:40:29.197 I did go to the,

00:40:29.836 --> 00:40:31.117 there was a Barbie exhibit

00:40:31.237 --> 00:40:32.079 in New York City.

00:40:33.400 --> 00:40:34.641 And they had all the Barbies

00:40:35.340 --> 00:40:39.123 with different disabilities.

00:40:40.411 --> 00:40:41.853 But I was thinking as I was

00:40:41.873 --> 00:40:42.454 looking at them,

00:40:42.675 --> 00:40:44.036 how amazing it would be if

00:40:44.056 --> 00:40:45.699 there was a Barbie with a

00:40:45.739 --> 00:40:46.521 facial difference.

00:40:47.021 --> 00:40:48.422 They have with hearing aid

00:40:48.664 --> 00:40:51.306 and not with an actual facial difference.

00:40:51.347 --> 00:40:52.148 So I agree.

00:40:52.228 --> 00:40:53.170 That would be huge.

00:40:53.826 --> 00:40:54.206 Yeah, I mean,

00:40:54.246 --> 00:40:55.226 there's there I was actually

00:40:55.246 --> 00:40:57.606 surprised how many dolls

00:40:57.646 --> 00:40:58.588 they kind of had in their

00:40:58.608 --> 00:40:59.768 diversity collection.

00:41:00.288 --> 00:41:01.108 Like, I think, you know, obviously,

00:41:01.128 --> 00:41:02.009 they have it a Lego,

00:41:02.068 --> 00:41:04.150 they have disabled Barbie in a wheelchair,

00:41:04.210 --> 00:41:04.309 right?

00:41:04.329 --> 00:41:06.530 I think they have limb difference Barbie,

00:41:06.550 --> 00:41:08.632 like a deaf Barbie.

00:41:09.231 --> 00:41:10.152 I think they have got blind

00:41:10.172 --> 00:41:13.012 Barbie to Barbie.

00:41:13.693 --> 00:41:15.014 So yeah, I mean, it's like,

00:41:15.233 --> 00:41:16.494 the next one in line is

00:41:16.534 --> 00:41:17.715 like a facial difference.

00:41:17.755 --> 00:41:18.635 Like, come on.

00:41:18.655 --> 00:41:20.476 Exactly.

00:41:20.536 --> 00:41:20.695 Yeah.

00:41:21.530 --> 00:41:22.429 Thank you, Paige,

00:41:23.050 --> 00:41:25.911 for sharing your story and your advocacy.

00:41:26.070 --> 00:41:27.811 And I love what you're doing

00:41:27.891 --> 00:41:30.652 on Instagram and your messages.

00:41:30.972 --> 00:41:32.833 And I can't wait to see you

00:41:32.994 --> 00:41:34.273 at My Face Celebrates on

00:41:34.313 --> 00:41:35.735 June fifth in New York City,

00:41:36.454 --> 00:41:37.755 where you will be our host.

00:41:37.855 --> 00:41:39.315 And we have Adam Pearson

00:41:39.356 --> 00:41:40.655 getting the Courage Award.

00:41:41.215 --> 00:41:43.317 And on My Face Stars Performing,

00:41:43.356 --> 00:41:45.378 you are going to love that part.

00:41:45.418 --> 00:41:46.398 It's my favorite part too.

00:41:47.211 --> 00:41:49.695 So if people are interested,

00:41:49.715 --> 00:41:51.016 you can learn more at

00:41:51.175 --> 00:41:52.918 myfacecelebrates.org.

00:41:53.038 --> 00:41:55.099 So thank you again, Paige.

00:41:55.119 --> 00:41:55.980 Thank you so much.

00:41:56.000 --> 00:41:56.981 I appreciate your time.

00:41:57.021 --> 00:41:58.402 This was so lovely and so,

00:41:58.503 --> 00:42:00.704 so excited to see you June fifth.

00:42:00.925 --> 00:42:02.606 It's going to be great.

00:42:02.626 --> 00:42:03.367 It's going to be so much fun.

00:42:03.387 --> 00:42:04.628 It's going to be the best.

00:42:04.648 --> 00:42:05.309 Thank you.

00:42:05.349 --> 00:42:05.989 Okay.

00:42:06.050 --> 00:42:06.829 Bye.

00:42:06.909 --> 00:42:07.271 Bye.

00:42:11.038 --> 00:42:12.639 Paige is an inspiration to

00:42:12.719 --> 00:42:14.481 me and everyone she meets.

00:42:14.681 --> 00:42:15.681 Everyone has a story,

00:42:15.742 --> 00:42:17.023 and I'm hopeful that by

00:42:17.083 --> 00:42:18.463 sharing stories like these,

00:42:18.923 --> 00:42:20.744 we can create a kinder world.

00:42:21.485 --> 00:42:22.766 For more than seventy years,

00:42:22.827 --> 00:42:24.228 MyFace has been dedicated

00:42:24.268 --> 00:42:25.509 to changing the faces and

00:42:25.548 --> 00:42:27.190 transforming the lives of

00:42:27.269 --> 00:42:28.670 children and adults with

00:42:28.952 --> 00:42:30.152 facial differences by

00:42:30.333 --> 00:42:32.693 providing access to holistic,

00:42:32.713 --> 00:42:35.757 comprehensive care, education, resources,

00:42:35.836 --> 00:42:37.418 and support that pave the

00:42:37.458 --> 00:42:38.679 way for better outcomes.

00:42:39.349 --> 00:42:42.170 To learn more, please visit myface.org.

00:42:42.771 --> 00:42:43.672 If you would like to learn

00:42:43.711 --> 00:42:44.853 more about the MyFace

00:42:44.873 --> 00:42:45.992 support groups so that you

00:42:46.012 --> 00:42:47.253 can connect with others in

00:42:47.293 --> 00:42:48.795 the craniofacial community,

00:42:49.376 --> 00:42:51.257 please visit myface.org

00:42:51.777 --> 00:42:53.938 slash online dash groups.

00:42:54.599 --> 00:42:55.920 Be sure to subscribe to

00:42:55.960 --> 00:42:57.541 MyFace My Story on your

00:42:57.581 --> 00:42:59.601 favorite podcast app and on

00:42:59.641 --> 00:43:01.384 YouTube to get notified of

00:43:01.423 --> 00:43:02.623 our next episode.

00:43:03.284 --> 00:43:04.324 If you'd like to receive

00:43:04.465 --> 00:43:06.586 email reminders of new episodes,

00:43:07.335 --> 00:43:10.617 Sign up at myface.org slash mystory.

00:43:10.777 --> 00:43:13.820 That's myface.org slash mystory.

00:43:14.721 --> 00:43:16.021 Thank you for joining us for

00:43:16.061 --> 00:43:18.443 this episode of My Face, My Story.

00:43:19.543 --> 00:43:20.045 Remember,

00:43:20.244 --> 00:43:22.286 it takes courage to share your story,

00:43:22.686 --> 00:43:29.030 so be brave and stand out.

On this month's myFace, myStory podcast, host Dina Zuckerberg speaks with Paige Lauren Billiot, a birthmark advocate, model, and film producer redefining beauty standards. Based in LA, Paige uses her platform to create representation for those with facial differences, celebrating her birthmark as her superpower. Featured in Harper’s Bazaar, Seventeen, and Glamour, she challenges societal norms and empowers others to embrace their uniqueness with confidence. Tune in for an inspiring conversation on self-love, advocacy, and the power of authentic representation.

TRANSCRIPT

 

 

On this month's myFace, myStory podcast, host Dina Zuckerberg is joined by Adele Capitella-Liu, a retired NYC teacher and a passionate advocate for the facial difference community. Diagnosed with Parry-Romberg Syndrome and having faced the challenges of breast cancer, Adele shares how her personal experiences have shaped her journey of resilience and advocacy. 

As the administrator of the Adult Facial Difference Community on Facebook, Adele fosters meaningful connections and supports individuals navigating life with facial differences. Join us as Adele discusses the power of community, the importance of self-expression through art and poetry, and her mission to uplift and empower others in the facial difference community.

PROGRAM TRANSCRIPT

 

In this episode of myFace, myStory, host Dina Zuckerberg speaks with Celina Leroy, an artist, art teacher, and advocate born with a Port Wine Stain birthmark. Celina shares how her personal experiences have inspired her to create powerful portraits of individuals with craniofacial differences, such as birthmarks, cleft lip and palate, and Sturge-Weber syndrome. Through her artwork and accompanying video interviews, Celina seeks to raise awareness, end the stigma surrounding visible differences, and redefine society’s standards of beauty.  

- [Announcer] Welcome to "myFace, myStory: "Voices from the Craniofacial Community" with your host, Dina Zuckerberg.

- Hello, and welcome to "myFace, myStory: "Voices from the Craniofacial Community." I'm Dina Zuckerberg, your host, and Director of Family Programs at myFace. Like many of you listening, I have a craniofacial difference. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "MyFace, myStory" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. This podcast episode is made possible through support from the Integra Foundation committed to improving lives. By the way, whether you're watching on YouTube or listening through Apple Podcasts, click Subscribe Now and we'll keep you updated on future episodes so you never miss out. And if you're a fan of "myFace, myStory," please rate and review the program on Apple Podcasts so we can get a message of inclusivity and empowerment to more people. Today, I am joined by Celina Leroy. Celina is an artist, art teacher, and advocate. Born with a Port Wine Stain birthmark, Celina creates painted portraits of individuals born with craniofacial differences, including birthmarks, cleft lips and palates, Sturge-Weber syndrome, et cetera. She hopes that her work will shed light on this underrepresented group of people and end the stigma surrounding visible differences and disabilities. Along with each portrait, she gives a video interview of that person giving more context to their story and journey. Welcome, Celina. I really look forward to our conversation.

- I'm so excited to be here.

- Yeah. So can you share your personal journey growing up with a Port Wine Stain birthmark? And how did that experience shape who you are today?

- Yeah, I was born with a Port Wine Stain on my chin, lip, and cheek. When I was a baby, I had like so many laser treatments to kind of reduce the color of it and the size. Like throughout my life, probably had like 90 or so laser treatments.

- Wow.

- Yeah, and then I had two kind of major surgeries on my lip to like reduce the size, because it's kind of larger on one side. And like with Port Wine Stains, it's a progressive lesion, so it gets larger as you grow. As any kind of like adolescence age, it will grow more. So that's why I've had those surgeries. So when I grew up, I always felt like pretty ashamed of my birthmark and really felt like I was different because of that and it's something that I should hide. So I like immediately like started wearing makeup and just kind of trying to cover it and blend in with other people. And I was always in the back of my mind like afraid that someone would notice, someone would see it and like just think that I was ugly or think that something was wrong with me. And it was like kind of like sad. I always loved making art since I was a little kid. And I wanted to create portraits of people with birthmarks. After I started going on Facebook and finding like support groups for people with Port Wine Stains, and I was looking at all these people and I was like, "Oh my God, like actually Port Wine Stains "are so beautiful." "They're like this red color, "and they're all different and unique "and they're like maps of color on the face." And I was like, "I should make a portrait series about this." 'Cause so many people feel like they deal with the same thing, like feel like that they're like ugly or something, so I wanted to use art to be like, "No, actually you're beautiful "and like you're a masterpiece."

- Right, I love that. So I have a good friend who wrote a book about how she hid her difference for over 20 years, and then she came sort of out of hiding and how freeing that is. Was there a certain point in your life where you felt like you didn't have to hide anymore, that you could be who you are? Or maybe you still haven't quite gotten there, but I was just wondering.

- Yeah. Actually like really recently, I would wear makeup like all the time and like only in rare situations would I not wear makeup. But this school year, so I'm a teacher. And this school year, I didn't wear makeup like the first days of school and like throughout the year. So it's been literally like a month. Something about like the kids seeing me without makeup. 'Cause you know, kids are like, can be kind of ruthless. And I like want to be putting up like this front that I'm like a teacher, like professional. Like I don't want them to come at me saying like, "Oh, you look weird and you're like..." And I still have those negative thoughts in my head. Even though I do all this work to try to like not have those thoughts, I still have them. This month, I haven't been wearing makeup. And I actually just brought my students to my art show today.

- Amazing, I saw a video of it, yeah.

- And I was talking about my birthmark and stuff. And like they were so supportive and sweet and loving. And I was like, hmm, like I didn't have to be so always like going to the negative of like how people will perceive me.

- Yeah, it's hard to get rid of those negative thoughts, isn't it, especially when you have grown up with it somehow.

- Yeah.

- Yeah.

- I think in some ways, that is one of the biggest challenges. So can you describe the process of creating a portrait of someone with a facial difference? And how do you connect with the individual to capture their story?

- Yeah, so at first, I was just on Instagram, and I was like adding people and finding people. And then people would like request, like send me photos of themselves. And then I would paint them and talk to them and like post the process of making the painting. And they'd be so excited and it was like really great. And then I kind of like wanted to move on to like more serious work. So if the person lived in my area, like in New York, I would meet them and take their photo, and paint from that, and then also doing an interview with the painting. So like along with every painting, I'd put an interview. Because I think that it's important not only to see what they look like, but to hear their story and their journey. Because we're more than just our physical appearance. We're like a human that goes through so much. And it's interesting how like we're all so different but then have this like similarity of like looking different, and like feeling, and like just our journey to like self-acceptance. So yeah, I think that it's like really cathartic and nice. And like I get a lot from it like emotionally just like hearing everyone's stories and like connecting on that level.

- When did you know you were an artist?

- Oh, I grew up in a pretty creative family. Like my grandfather's an artist. Like my dad is like an antique dealer but went to art school. so everyone was like very encouraging of my art making. And then, because I was like pretty good at it at like a young age I guess, or I thought I was good at it... Everyone told me I was good at it, so then I was like, "Oh, this is my thing." So I like went to art school. I always loved drawing. And I always felt like, "Oh, that was like my talent," you know? So, that's fun.

- Yeah; no, you are incredibly talented. And yeah. So how do you choose the individuals you paint? And how do their personal stories influence your artistic process? Where do you find them? How do you choose them?

- Yeah. Well, a lot of it's just like, "Oh, I have an art show. "Like I need to meet people and like make it happen." Like and who's available and who's here. Some people, I think it's a process of... It's like a pretty big step for some people to put their face out there. Like, some people I've talked to and they wanna do it. But then somehow they flake and like they don't come through. I don't wanna be like, "Oh, you're flaking." But it's like, I think that it's hard for someone to really be vulnerable. And like I am asking a lot of them. So like putting their face out there and then also talking to me about their story, not everyone's like comfortable doing that. So the people that are, like feel like they're at that moment in their life and they're willing to talk about their birthmark or their facial difference, like being vulnerable, and they're in New York City. But I also started traveling and meeting people out like side of the country. So I took some pictures in LA when I went there in the spring. I went to France and England over the summer. And so I met up with people with birthmarks and took their photos. So hopefully, I'll be making paintings of them soon. Like it does take a while to make a painting. So there is like a kind of time delay with that. But I'm trying.

- So I had the pleasure and the honor of being photographed and then having you do my painting and interview, which is pretty amazing. You are so incredibly talented.

- Thank you. So I'm excited to see it. So I have to thank you. So as an art teacher, an advocate, what do you hope your students and followers learn from your advocacy work and your artistic creations?

- Yeah, like it was interesting like today bringing them, the kids, to the show. I was like very stressed out the whole time thinking that they were like not gonna be into it or they're like, "Oh, it's too long." Like all those negative thoughts. I was like, I bit my nails. I was like so stressed. And then at the end of it, like Rick, who runs Positive Exposure, he was like, "You're doing so good. "Like this is amazing, they're so into it." And I'm like, "Oh, my God." And then once I went up front, they all like clapped for me and they were like, "This is so amazing." I was like, "Do you think I should edit it shorter?" And they're like, "No, keep it the way it is. "It's perfect." And then I was reading their notes that they wrote in the book and like how did they thought of the show. And they were like, "Oh, like you have so much confidence." "Like it's such a journey." "Like this inspires me so much. "I hope to make art like this in the future "that actually has meaning." And that really like meant a lot to me. I was like, "Yeah, what I would hope to do is like "not just art that..." I think art can have the ability to just be like beautiful. But then I think art that has meaning and helps other people is like, I think kind of better. So I hope that they would make that kind of art, like something that's meaningful and like is helping other people and themselves.

- Yeah, I will say I think vulnerability plays a big part in this. And I understand what you were saying before about you have to be vulnerable in order to do this. I mean, I'll confess, I'm a little nervous that it's gonna be like up there and people are gonna see my interview. And yet, I think if we want to create awareness and we want to show people who we are, vulnerability has to play a role in that. Or else, what are we doing this for in some ways, I think.

- Yeah, yeah, being vulnerable is really scary. Yeah, I agree with you. And I thank you for doing that and like opening up. And I know when I'm asking people these questions, like it's sometimes like you have to dig deep and like think about like the time that someone hurt you because of the way that you looked and like talking about it. And then I think just through the dialogue of talking about it and kind of being able to relate with someone else on that, then it'll like start healing those wounds that you felt.

- And hopefully, helping others who may be. 'Cause I think, I always say this, but there's power in just knowing you're not alone. And so hopefully, by sharing the interviews and sharing those stories, others will say, "You know what, I feel the same way." And they may or may not even have a facial difference, but it's just their connection. Because I think we all have insecurities, whether we have a difference or not, but some are just more visible than others, right? But I think we all have those differences, or the insecurities that we feel about ourselves.

- Yes. Like one of my students, I wrote on a board like, "What is the meanest thing that someone's said to you?" And I'm gonna post it on the gallery. One of my students participated because the rest of 'em left. So only one of them did. But then she was like, "The meanest thing, "like someone said that my hair, like my facial hair, "made me look like a man," or something. And I feel like those kinds of small things that you remember, that mean thing that someone said to you when you were a kid really relates to everyone. I feel like there are a few people that like have never dealt with that. So I think it is relatable.

- Yeah. So to our audience, I hope that you're enjoying this episode of "myFace, myStory." But if it's your first time joining us and you've been with us since the beginning, make sure you've subscribed to our YouTube and Apple Podcast channels and sign up for our mailing list at myface.org/mystory. So Celina, what challenges have you faced in your efforts to bring attention to visible differences and disabilities through your art? Have you faced any challenges?

- I guess one challenge is just like Rick has been great at Positive Exposure because they've shown my work two times. But like the in-between times, like where to showcase the work. And I'd love to like, any opportunities out there in the world. Like if you have galleries, no galleries, or places to show the work so like the message can be spread further. I think just awareness is about like making people aware, so as many people as possible. That's the challenges.

- So related to that, in your opinion, how can art play a role in changing societal perceptions of beauty and breaking down stigma around visible differences?

- I think, yeah, that's like my main goal. So I think that art can do that just by showing, giving someone the space and the platform to present themselves. That is, in its own way, like breaking down those stigmas. Because if you only see one type of beauty that fits in a certain kind of box, then you won't... Like art has the ability to expand our perceptions of what is beautiful by seeing other things that are beautiful. I mean, like 200 years ago, like European perception of beauty was like white, thin. It changes throughout time. And this can be very narrow and won't allow other beauty to come in until we like have diversity and see everyone. And then you're like, "Wow, everyone's so beautiful."

- Right, do you think we're making progress or we're making headway?

- I mean, I would say so, yeah. I mean, there's a lot of like initiatives to show diversity like in the media. I think, like "A Different Man." I think even just like having diverse bodies in like Victoria's Secret, like that is... When I was a kid, in Victoria's Secret, all the girls were like size zero, and perfect skin, flawless. And now, they're making an effort because that's like what the consumer wants to see. I mean, probably they could be doing more. But I do think like compared to when I grew up and like shows like "America's Next Top Model," like I remember watching those shows and being like, "Ah, like I wanna be a model. "Like I wanna be perfect, I wanna be..." And they would just tear down the girls if they were like overweight, and they were like not even overweight. You look at the videos, you're like, "This is so toxic."

- Right, right.

- So I do think we've moved like in the past 10 years in a good direction. Hopefully.

- Yeah, I think that's right. I think we have a while to go, but I think there's definitely more attention to that, and more awareness, and we're seeing it more. We're seeing those people out there, the models in the media. But like I said, I think we still have those challenges. But I think we're moving, hopefully, in the right direction.

- Yeah.

- What has been the most meaningful or rewarding experience in your journey as an artist and advocate for individuals with craniofacial differences?

- I think just having the opportunity to like showcase my work, and then hearing everyone's responses to it. Like hearing that the work is like moving them or makes them think of something differently, that is so rewarding. I'm like, "Oh, I'm gonna cry." If they're moved by it, then it makes me feel like all my hard work is like successful, and people are getting it and it's working. Like I had a parent, one of the chaperones at my trip, and she was like, "I was like gonna start crying." She's like, "I think it's so important "that high school students especially see this." She's like, "I didn't even know what I signed up for. "All this was great." And so like that moment I was like, "Yay, I'm so happy."

- Yeah.

- Yeah.

- So you shared many stories through your portraits and interviews. Is there one that stands out to you as a particularly powerful or transformative one? And I know there's been so many, so I'm putting you on the spot.

- I mean, yours was really powerful. Like hearing your story and how you like now are this like powerhouse running myFace and coming so far from like being a kid that like wanted to sit alone. And now, everyone is around you.

- Right, right.

- That's pretty powerful. And like, I think that those are the choices that you made to like be like, "I'm defining my life. "And I wanna go in this direction, and I wanna change it, "and like I wanna change the lives of others." And that's so powerful. Hearing like Austin, who I painted, just him talking about like disability rights and like how there should be more disabled people at the table and like making choices, and Pride and Disability Joy, like I love hearing about that. And now he's like, "People with disabilities "are not here just to make able-bodied people "feel good about themselves." I think it's really powerful. Like people are not just inspiration. They are like real people doing things, working hard. Like he was saying, like, "Disabled people are like the," what did he say? Uh, I forgot what he said. But it was like, "not your inspiration, "like to make you feel better." It's like, "We're inspirational "by doing inspirational things, "like being vulnerable on the internet." So yeah. Another one. My friend Ava, she was born with PHACE syndrome.

- Okay.

- She also has like a little bit of a Port Wine Stain. She's undergone like so many surgeries. And she also has like a learning disability, so it was like harder for her in school. But now, she's working as like a patient transport at Transporter, and like has a full-time job, and is spreading awareness about vascular birthmarks. And she's a runner. She like runs miles. She's like running everywhere. She's doing marathons. And I'm proud of her. Like, you know, she was like a shy kid, and now she has all these friends. And like, that's so amazing. Every single person is inspirational. I don't know how to choose just one.

- Yeah, you can learn so much. I always say in my job, I feel like as much as I give, I learn so much from everybody else, that they give me so much more. And I imagine for you, what you're giving everybody, you get so much in return for that. And you learn so much, right?

- Yeah.

- So, what advice would you give to others with visible differences who are looking to express themselves or share their stories either through art or another medium, somebody like you who wants to express themselves in some way or, you know, do something similar in whatever way.

- Yeah, I think it would be like just starting and like working hard and doing it and being consistent and seeing like what inspires you and like working on that. And then like, it'll grow from there. And like, what kind of art making do you like to do? Are you a singer? Are you a visual artist? Do you like painting? Do you like watercolor? Like finding your mediums that you like and then exploring them and making content, making your products. Like I think that art is beautiful, but it is a lot of work. So you do need to have a certain amount of like dedication and like go for it. And then once you do do that, and all that hard work will pay off and you'll like be like, "Wow." Yeah, just do it.

- Love it. I know I think about writing sometimes. I always think, talk about negative thoughts. "I'm not a good writer. "I don't know if I can do this," all of that, you know?

- Yeah, I also feel like those negative thoughts, like the perfectionism in you, like you just need to like start and then just do it. And like, just the process of making, process of writing, like through the process, you won't even have a moment to even think about is it good or bad because you're just doing it.

- Right; right, right, right.

- Then you can reflect maybe later. But I think, not even trying to listen to those thoughts. Because something is better than nothing. That's what I tell my students all the time. Because they'll be like, "I don't wanna, I don't wanna." I'm like, "Just finish it, like you're so close." A lot of people will be like starting a project and be really excited. And then they're like, "Ugh, I don't wanna finish."

- And then you abandon it, yeah.

- And then they abandon it and it never happens. It's like, "No, just finish it and then..."

- So what advice would you give to other young people living with a facial difference who may be struggling with self-acceptance?

- I'm just like thinking about it, 'cause I ask the same questions in my interviews, in like everyone's interview. Like Aaliyah was like, "Just do it. "Just be yourself. "Like go like push yourself, go out there." If you're like a young person with a disability or facial difference, like one, like see other people that are like you. Like try to connect with other people. It was really helpful for me to just talk to other people with birthmarks. I think when I was younger, I didn't wanna... I was so ashamed of my birthmark, I almost didn't wanna be associated with other people with birthmarks because that would be like acknowledging that there is something wrong with me. And that was very toxic. So I think once you realize like there are other people like you, there's nothing really wrong with you. It's just a like thing that happened in the birth. Like you just have a birthmark. Like it's not that big, it's not that serious. Like you're okay. And then you meet other people that are like you, and then you'll have so many connections with them. And that will be so meaningful and rewarding.

- So when was the moment that you met somebody like you?

- Well, there are many... Like I've seen people on the street that had birthmarks. One of my friend's mom had a birthmark, but she was like working for Avion Makeup concealer. So she had all this makeup. And she was like, "This is how you cover it, "boom, boom, boom." So I feel like, she was nice because I could relate. But then I was a little bit like negative 'cause I was like covering it. But she was great, like no hate. But I think the first time I like really connected with people was when I went like to the Vascular Birthmarks Foundation and I went to one of their conferences that they had in New York. And I met like a whole bunch of people with birthmarks. And then it was really like 2020 during COVID when I was like, "I wanna do this project," that I started talking to people more and like diving into it. So kind of relatively recently, four years ago. Yeah.

- For me, it was in my early 20s when I started really connecting with people in the craniofacial community. And that was just sort of the beginning of it. Because I think, like you, I spent so much of my life wanting to hide it or not really talk about it or acknowledge it. And so it was not really until I was in my early 20s that I even started to talk about it really. So I think that's true for a lot of people, I think. Although I think there's a lot more support in doing it today than there was when I was growing up. Because you have social media. You have these Facebook groups. You have organizations like the Vascular, what is it, the Vascular Birthmarks Organization and myFace. So you're able to connect much more, I think, than when I was certainly growing up, so. So what advice do you have for parents who have just learned that their child has a facial difference? What would you say to them?

- Well, my first thing is like, if they have a Port Wine Stain, I would definitely say like, "Go to a doctor and like see. "Check your kid out. "Make sure that they don't have like Sturge-Weber syndrome. "Or if they do, then like, it'll be okay. "Like you'll get the treatment. "Like there's a lot more. "Like compared to some people I've talked to "who grew up in the 70s and 80s, "like the treatment has developed so much more. "So your kid will be okay. "Like also, and then reach out to other parents. "Reach out to like people like me. "And we can, like, we can talk to like your kid." I don't know. Like I have to think about like, "Oh, if I had a kid with a Port Wine Stain, "like I would be so equipped to help them." But I don't know that I will, because it's not like genetic. And I think that's one thing that's different about like having a facial difference or disability. It's kind of like random between families. So your parents might not have the same experiences that you will have, the kind of connecting. Did I answer your question?

- Yes, absolutely. So how important do you think it is being part of a community like myFace?

- Yeah, definitely. I mean, going to the Spaces for Faces, I felt so like, finally like the sense of belonging. And I think that sense of belonging, I haven't really found in a lot of spaces where I felt welcomed and like I was supposed to be there. It's so major, like to feel you belong in a space, that you're accepted and understood by the people around you even if you don't know them that well.

- Right.

- And it was great.

- And I think it's so freeing, I think, to know that there are others that are on that same journey. 'Cause sometimes, I think you can feel very alone, like no one else could possibly understand or no one else could have that experience. And yet, when you connect with others, you realize, "Oh wait, I'm not the only one." Others have gone through that same journey or that same experience or have felt that way. So I think that's the beauty of Spaces for Faces or when we all went to see the film screening together of "A Different Man" or what you are about to do. So share a little bit about... Well, this will come out after your gallery opening, but I know it'll be up for a couple weeks. So share a little bit about where the paintings can be seen and what's happening.

- Yeah, so on October 6th will be my gallery opening of my portrait series, Defining Beauty: Portraits of Birthmarks and Facial Differences, at Positive Exposure Gallery. So the opening will be from one to four. And then afterwards from 4:30 to 6:30 will be like a life drawing event where some of the models who I painted will be like posing, and the audience will participate and draw them as well.

- And how long will it be up for?

- So it will be up for like a month but not in the original space upstairs at Positive Exposure. So if you wanna see it at Positive Exposure, you can email them. And they will be able to show it to you.

- Oh, okay.

- But also, all my stuff is online and on Instagram. You should follow me, Port Wine Stain Paintings. And hopefully, I'll have another show coming up.

- Okay, so speaking of another program or another exhibition, looking ahead, what are your hopes for the future of advocacy and getting your message and your paintings out there? What changes do you hope to see in the future?

- I hope that I just have more spaces to show my work. Any galleries or like interviews like this or just making more work and like having it go further so more people can see it. I hope in the future, there will be all different types of artists who have disabilities or facial differences and having a platform to create their work and have it being celebrated and understood by the masses. Yeah. Yeah. Like I want every kid to not feel like they're, like if they have any kind of disability or difference that they're not alone. Also, just for people to learn that it's not cool to make fun of someone further, something they can't change.

- Right. Did you deal with teasing and bullying or anything like that when you were growing up?

- Like I always feel like I was very sensitive, so I would kind of like to not allow that to happen, I would kind of really go inward in myself and just try not to talk to people. So I'm lucky I wasn't like physically bullied, but maybe like a lot of emotional bullying, exclusion, like people not wanting to hang out with me when I got older and around middle school age and just feeling left out. And I always thought it was because of my birthmark. And then just growing up, being older, like people being like... I would always hide it. So it was always like a fear. Like if I was dating someone, like if they saw me without my makeup, like would they still like me?

- Mm, yeah.

- Would their family still accept me? Like one guy I dated, he said, "Oh, like please wear makeup "like when you see my grandfather. "You know, he's old school. "He doesn't understand these things." And I was like, "Okay, I'll do it but like..." Yeah, you know.

- Yeah.

- Like who are you to judge? Like who are you?

- Yeah.

- Yeah.

- So speaking of that, what would you say to your younger self knowing what you know today?

- I would say, "You're so cute." Yeah, I think I did have like so much like self-doubt when I was little. And I just want like my younger self to feel like loved and have that community. If somehow I could have had the community when I was younger, that would've been really helpful. Because I think I just desperately wanted to feel included and part of something, and not feeling so different. So I would tell my younger self like, say, "Things will get better. "You'll find your community. "Just hold on, you'll be okay."

- Mm.

- Yeah.

- And so who do you see when you look in the mirror today?

- Ahh, this amazing person. Yeah, I'm proud of myself for being like so vulnerable and like letting myself out there. Like it's like kind of hard but like I'm proud of myself for doing it, and, you know, helping other people connect with each other too. Yeah, I'm very proud of myself, so.

- Well, you do have a lot to be proud of. And Celina, thank you so much for sharing your journey, your advocacy through your incredible artwork. And I can't wait to see my painting on the wall, and everybody else's paintings. And to see what you have accomplished is just amazing and so special. So thank you.

- Thank you, Dina. Thank you so much for everything you do in this.

- Ah, thank you, thank you. I feel like it went so fast, the interview, so yeah, the conversation. So thank you.

- I could just talk all the time with you.

- Yes, exactly. Thank you.

- Thank you.

- So Celina is an inspiration to me and everyone she meets. Everyone has a story. And I'm hopeful that by sharing stories like these, we can create a kinder world. For more than 70 years, myFace has been dedicated to changing the faces and transforming the lives of children and adults with facial differences by providing access to holistic, comprehensive care; education; resources and support that paved the way for better outcomes. To learn more, please visit myface.org. If you would like to learn more about the myFace support groups so that you can connect with others in the craniofacial community, please visit myface.org/online-groups. Be sure to subscribe to "myFace, myStory" on your favorite podcast app and on YouTube to get notified of our next episode. If you'd like to receive email reminders of new episodes, sign up at myface.org/mystory. That's myface.org/mystory. Thank you for joining us for this episode of "myFace, myStory." Remember, it takes courage to share your story. So be brave and speak out.

On this month's myFace, myStory podcast episode host, Dina Zuckerberg, is joined by Amy and Lazer Schefer, a dynamic mother-daughter duo who have turned their personal challenges into a mission of advocacy and support for the craniofacial and rare disease communities. Join us as we explore their inspiring story of resilience, the challenges they’ve overcome, and the impact they continue to make on the lives of others.

 

- [Announcer] Welcome to "My Face, My Story: "Voices from the Craniofacial Community," with your host, Dina Zuckerberg.

- Hello, and welcome to "My Face, My Story: "Voices from the Craniofacial Community." I'm Dina Zuckerberg, your host and director of Family Programs at My Face. Like many of you listening, I have a craniofacial difference. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "My Face, My Story" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. This podcast episode is made possible through support from the Integra Foundation, committed to improving lives. By the way, whether you're watching on YouTube or listening through Apple Podcasts, click "Subscribe" now and we'll keep you updated on future episodes so you never miss out. And if you're a fan of "My Face, My Story," please rate and review the program on Apple Podcasts so we can get our message of inclusivity and empowerment to more people. Today I am joined by Amy Schefer and her daughter, Lazer. Amy is a passionate advocate for the craniofacial and rare disease communities. She is Lazer's mom and a director of Advocate Angel, an organization that helps guide families through the medical maze. She shares her intense journey as a medical mom, navigating with Lazer through dozens of surgeries and challenges to engaging in pioneering research efforts and advocating tirelessly in one-on-one family assistance endeavors and legislative action. Lazer is a 20-year-old patient advocate and public speaker with Goldenhar Syndrome. She has appeared on the TLC series "Two in a Million: A Face Like Mine." She has also appeared on numerous podcasts and radio interviews and has moderated panel discussions at Seattle Children's Hospital. Welcome Amy and Lazer. I really look forward to our conversation.

- Hi.

- Hi.

- Hello.

- Us too.

- Yeah. So, Amy, can you share the early days of your journey with Lazer's diagnosis and what were some of the initial challenges you faced as a mother navigating the medical care system and her care?

- Well, we're country folk, and one of the biggest challenges that we had is we were at a teeny tiny hospital, nobody had ever heard of Goldenhar. We had a great emergency room, I mean NICU doctor, who stayed up all night trying to figure out what condition this may be. But the fact that we were farther away from the central areas where medical care happened made it more difficult, And then early on, we also, we knew we needed to get to a craniofacial team.

- Right.

- The team that was assigned to us through our insurance was a not well-known team. They met once every three months. They brought, they brought somebody in who said, you know, who was a professor emeritus, you know, who said, "Wow, this is really, "you won't find a kid like this very often." And that was kind of like-

- Wow.

- Their amassed wisdom, and it was hard... to get referred to the top team in the state, and the top team in the state was in disarray. They kept losing their funding. So, one of the biggest challenges for me, aside from not knowing ahead of time, despite all the ultrasounds and stuff, that Lazer was gonna be different, one of the biggest challenges was just getting situated in the right medical team so that the quality of care could be better than what we started with.

- Mmm, right. And-

- Yeah.

- So you did not know, and did, and was there anybody else in your family that you knew of that had Goldenhar or? No, so this was a total-

- No, the one and only.

- Surprise for you.

- Yeah. And luckily my dad was a psychiatrist, so he went to medical school. So he asked all of his med school buddies, "What do you do in a case like this?" And they said, "Find a craniofacial team." That was pure luck-

- Right.

- And not something that most people have. And, you know, some of the reason I just became an advocate is because... the information that families have access to is so scattershot.

- Right.

- And if you don't have that information, your results are way different. And not only that information, but lots of other kinds of information. So-

- Mm-hmm.

- We also just didn't have really great facilities, we didn't have great home health agencies, we didn't have, you know, it was, I had to learn how to fire people who were coming to take care of Lazer who-

- Right.

- Who, you know, didn't do as good a job as they needed to.

- Right.

- Lazer had a trach and a G-tube at the beginning, and other things, and it, you know, substandard care doesn't cut it.

- Right.

- So, there are a lot of challenges, and you know, common sense, you would think, okay, when any person is born, they're, you know, the medical system will wrap you in its arms and all will be well, you'll know what to do, you'll be speaking with the right people, and it's kind of, no, you actually have to take some action on behalf of yourself and your family.

- Right.

- To get that, so.

- So, Lazer, growing up with Goldenhar Syndrome, what was some of the most significant challenges you encountered and how did you find the strength to overcome them?

- I have a couple different answers for this, but one is, which is a very common answer, is just learning how to deal with people's reactions to you.

- Right.

- And I had a couple of like really, really hard moments that triggered like a whole bunch of years' worth of not wanting to be seen in public or like trying to literally hide the left side of my face.

- Mm-hmm.

- Because that's what I considered to be the more different side. Then, another one of the harder things has been dealing with my face changing so many times.

- Mm-hmm.

- It's like I get used to the way my face looks and then I have another surgery that is ultimately, of course, for the better, like betterment of my health, or at this point, I'm just now at the point where I can, I'm getting surgeries to more even out my appearance as well.

- Right.

- But learning to love each face that has come into my life over the 20 years has been one of the more interesting challenges, let's say.

- Yeah.

- And one of the main things that has like helped with that, honestly is just taking time.

- Mm-hmm.

- It took a lot of time for me to really start to, like, listen when my mom and like... my other close family members would say that, look, you really are beautiful. And I would always brush it off like, "Oh, no, you're just saying that you're my parents, "come on, shush."

- Right, right, right.

- One thing that ended up really helping with that was I got really bored in 2020, you know, quarantine time.

- Mm-hmm.

- And I was on TikTok a little bit before that, but I started just posting a whole bunch of different, like, content regarding what it's like to live with a facial difference.

- Mm-hmm.

- And a lot of them were more funny, but some of them were really like expressing how it feels to look different. Even though I did, I have gotten quite a few like nasty comments over the same years, just sharing, sharing that part of myself really helped ground ground me in the sense that I, in the knowing that I am different and that's not a bad thing.

- Right.

- And different is beautiful.

- Exactly. And when you talk about, Lazer, about, you know, having surgeries in your face changing each time you have surgery, that's something that I've heard quite often from individuals in the craniofacial community, so I don't think you're alone in that. So you both have touched on it, but advocacy has become a significant part of both your lives. And so I'm wondering what motivated you to turn your personal experiences into a mission to support others in the craniofacial and rare disease communities?

- Well, I can say for me, naturally people started referring people to me because I had bushwhacked a path through the jungle with a machete, and they were like-

- Right.

- "Talk to this lady, figured it out." So I naturally was doing that and I was passionate about it. And even to the extent where I had some medical professionals referring people to me, 'cause I could say things they couldn't say. Like, in this previous state we lived, G-tube food, once a kid had a G-tube, the doctor was legally responsible for failure to thrive. I'm doing a little quote marks off the screen, and failure to thrive in Lazer's case was, they were putting formula through the G-tube that was a bunch of chemicals and that didn't, Lazer's body didn't like that.

- Right.

- It's kind of a simple matter. But the doctor had responsibility... Like, in other words, if you have a non-G-tube food kid, you can feed them, you know, Velveeta and Cheetos and, you know, gummy bears and nothing else and nobody gets in between you, not that you should.

- Right.

- But... if you take your kid off of the prescribed G-tube food, you can have your kid taken away in the state that I was living in, so it started at a very young age, 'cause this medical person from DSHS couldn't tell people, "to use goat milk... "or use the breast milk bank."

- You know, so she'd say-

- Right.

- "Talk to Amy." So, because that's how Lazer began thriving.

- Right.

- You know, just having natural food, so I worked out a special thing with the dietician to basically look the other way for a couple weeks. And if Lazer's weight went up, then we could, you know, have her look our way again. You know, these are the kinds of things, of course I would wanna help anybody that was, you know, right after me in the same shoes that I was in.

- Right.

- You know, and I think parents are just like that, or anybody that's gone through difficulty. You know, if you actually found your way through the woods, you wanna help somebody because you know what it was like and especially how long it took you, wouldn't it be nice if the next person didn't have to spend-

- Right.

- That much sweat or that much time, you know, with tough diagnoses? The longer something takes, the tighter the circumstances you might be in. So, we all, I love that about craniofacial parents and rare disease parents, and we're all ready to help, and that was my motivation.

- Yeah. And Lazer, do you have anything to add to that about your motivation and why you-

- Yeah. When I was younger, I had never met anyone with the same condition, Goldenhar Syndrome-

- Mm-hmm.

- Up until I was 12 and got invited-

- Okay.

- On that TLC show. And so I always grew up feeling very, very, very different and not really having anyone else who was in the kind of exact same boat.

- Mm-hmm.

- The other part is I have not seen a whole bunch of facial differences out in like the media, in the general media if it's not to like poke fun at them.

- Mmm, yeah.

- Or if, not like a villain in a movie, or something like that. And so a lot of my advocating just came from me... realizing like, "Oh wow, I'm not the only one here. "I'd also love to see more people like me." You know, just out in the world thriving, doing their life, and, I mean, that's what got me into it.

- Right. What kind of feedback have you gotten since sharing your story and appearing on TLC's "Two in a Million?" How has that, what has been the feedback? How has that changed you or impacted you?

- Honestly, just meeting someone for the first time with the same facial difference was like a godsend. Mm-hmm, yeah.

- And really made me realize that, oh, there are a lot of other people that also have this issue, it's just not that common, right? So it makes sense.

- Right.

- But my mom actually would probably have a better answer 'cause I don't really know exactly the changes that I went through.

- Okay.

- Right after, but I do know that a whole lot of people were just sharing about their own kids-

- Right.

- Seeing me on the TV show or, I had a lot of families trying to get in contact with me, and that was really, that was really lovely, and also at the time I got overwhelmed and then kind of like, which is, I don't really like that I did that, but I was 12.

- Yeah, I always say there's power in the shared story and knowing you're not alone and I just feel like what you just shared, that is so true. I mean, when you realize you're not the only one who has Goldenhar or been through experiences or had lots of surgeries, I think there's a comfort in that when you know you're not the only one, the day you realize that, so.

- You know, and that's the thing with craniofacial differences is that Lazer always looked different, and what people were responding because of that, and it is super isolating if there's nobody like you-

- Yeah.

- And you never met somebody like you, and that was the whole premise of the "Two in a Million" series, it was a whole series. What if you had a condition so rare that you had never met another person like you?

- Mm-hmm.

- So, and the series was like these two people who had this condition meeting for the first time, some of them were adults.

- Mm-hmm.

- So, I think, you know, what I noticed after the show also is you had been singled out. That's easy to do if you have a craniofacial condition, you were singled out, you were bullied because of that.

- Mmm.

- And at that time, more like when you were 11, you started like looking for where the bully was, like it was your first understanding that-

- Mm-hmm.

- 'Cause we, your school-

- Mmm.

- Everybody loved you, you knew the people well, you had sort of, you knew you were different, but you didn't have a sense that it could be dangerous to you. Then after you were bullied it was like, "Oh, where's the danger? "You know, where's the danger?" And, "Potentially anybody could dislike me." And then you did that really cool bullying video for Pacer with Austin on the show, and a lot of people were like, "Wow, you guys are courageous, that was awesome. "Tell me more," and then you kind of flipped. It was like, "Oh, there also could be a lot of people "out there that really appreciate me "because I'm articulate," and you were, it really made a big difference. And then, so that's what I noticed happening

- Right.

- It was a kind of a weird lightning bolt from heaven to be like invited onto a show, and then even it was, you know, international, so, you know, a girl in Norway with a pony was like, "I have Goldenhar and this is my pony, "you wanna come ride the pony," like it was... wildly, it was a wild experience.

- Right. So, Amy, you shared a little bit about Advocate Angel, but can you tell us why you started Advocate Angel and the work you're doing, you want to do, to navigate the complex medical maze, I know it is complex, and what inspired you to start Advocate Angel?

- Yeah, it's basically, you know, I always found that when I was super up against it and had no options and didn't know what I was gonna do and was about to lose it, an angel would jump out of the woodwork, and I mean, somebody in Walmart would go, "I got you, blah, blah, blah." Like, and you're like, "What?" You know, so when that happens, it is so profound and you, there's no way to pay it back, you just wanna pay it forward. So, I... I think our family went through something really different because we moved in order to get the best craniofacial care because even though eventually we got referred out of the small town we were in to the major city, then out of that particular office to the top office, the top craniofacial team was falling apart, we went and we got bad advice there, basically.

- Mmm.

- They wouldn't do any surgery for Lazer until Lazer was six, and Lazer couldn't, Lazer had a trach and other things, so Lazer was always a very articulate person in sign language, right? And I knew as a teacher that not, Lazer not being able to communicate directly with somebody by mouth, but needing to sign to me and have me sign to somebody else, that would really not be good for Lazer.

- Mm-hmm, right.

- So then we got another, we got another input that, "Yeah, "we've been doing these surgeries much younger than Lazer. "Absolutely Lazer can have a surgery "to advance the jaw and remove the trach." And that required us eventually moving states. So, how that plays into Advocate Angel is. I know how, like we have... pretty much like 40% better across the board experience with everything and being now exposed to other families that haven't known how to advocate, or haven't had the team that we got, or haven't had... certain blessings that we've had, we've seen the outcomes be really different. So I just, I'm pretty much on fire about it. There's two things that you need to make a good decision. You need enough information, and typically it's really hard to get good information on, oh that's funny. And you need heart and courage, and that means connecting to people in a community, and so I just thought if I could help families get good information and expand their heart and courage, that would mean the world to me.

- Yeah. And no doubt that this probably will help a lot of people, because I think you're right. I think when you have a child with a craniofacial difference and if you're not in a major city, it can be really hard to know how to navigate and you feel so alone in that, I think as a parent, you just feel like, "What do I do?" And I don't know about you, but I mean certainly my parents didn't have access to the internet and all these things, and Facebook.

- No.

- Or any of that, yeah, right?

- Didn't have that.

- We didn't even know about the Facebook support groups until I was 12, I think.

- Yeah.

- Literally, that lady from the show-

- Yeah.

- Was trying to contact me on Facebook.

- Oh wow.

- I didn't use Facebook, and plus, I thought this was somebody scamming, like they were gonna sell me a bunch-

- Right.

- Like, "We're the TV show with TLC." I'm like, "Yeah, right." So, they almost packed up the offer, like literally they were going, "Well, we're not gonna film this episode. "We didn't get the person, they never replied." And then, I dunno, somehow they reached me.

- Right.

- Yeah.

- So, to our audience, hope that you're enjoying this episode of "My Face, My Story." Whether it's your first time joining us or you've been with us since the beginning, make sure you're subscribed to our YouTube and Apple Podcast channel and sign up for our mailing list at myface.org/mystory. So, Amy, as a mother, how do you balance being an advocate with the emotional and physical demands of caring for Lazer and managing all her medical needs? And I mean, although Lazer you are now 20, so I'm gathering, you probably are able to now make a lot of your own decisions, right?

- Yeah, that's a lot more true. When I like reached 16, she was starting to go, "Now, here, you do this, I'll still do this. "Now you do this and this and I'll do this."

- Right, right.

- And over the years-

- Yeah.

- but now you, you get to do most of it.

- Yeah. That's-

- So that's what I'm happy for.

- Yeah. That's actually one of the real timing things of starting Advocate Angel, because I've always advocated, people have always sent people to me, but now, you know, Lazer is thriving and... driving their own three trailer semi. I mean it's not a small transfer all that stuff over, and so, I am in celebration of all of that and have more bandwidth to share with other families.

- Right. And... Amy, I think you are involved in also some research that's being done, if I'm correct.

- Yeah.

- Can you share about that?

- Yeah.

- Yeah, I've been involved with the CARE project, which is a study of craniofacial microstomia. It's a psychosocial study. So, we've interviewed, it's an NIH grant. Across five years we've interviewed caretakers, patients and medical professionals in a bunch of different ways about craniofacial microstomia. Rare conditions are very hard to study because amassing data, now that the internet is more impactful, it's easier, but amassing data used to mean that you'd have to fly people all to one city, and even finding all those people is hard with the rare conditions.

- Right.

- So, this is one of the first studies of craniofacial microstomia and it's, there's a, we've done a lot of published stuff about what the parents say are the hardest things and so that they can, we can take this information to providers and train them, you know? So, some of the first published stuff was about parents' comments that it's like drinking from a fire hose, there's so much going on.

- Right.

- And that's not something that, you know, providers have known. So, I'm involved with that research. I'm also involved with the EveryLife Foundation, RDLA, which is Rare Diseases Legislative Action.

- Okay.

- There's a lot of crossover from craniofacial to rare diseases. There are many craniofacial conditions that are rare, like where they are.

- Mm-hmm.

- So, RDLA pairs advocates with legislators to bring certain topics that are being considered in the legislature, to bring a personal voice to that. So, I just recently talked with my state representative and state senator about a piece of legislation that's going to allow Medicaid doctors to sign up for multiple states.

- Okay.

- That's really relevant because, and my personal story that adds good material for them so that they get why to do that is, I had the audacity to convince the top doctor for the surgery that Lazer got on their ear and hearing aid post, to get out of his exclusive contract at Cedar Sinai, get a license to practice medicine in Washington, and surgery privileges at Seattle Children's. And he agreed to fly himself out on his own dime and-

- Wow.

- Do the surgery with Lazer's doctor to train her. Who in their right mind would ask, like, like, I was shaking in my boots for a long time, but the, I did not see another way to do it.

- Right.

- And the point is, nobody should have to do that and he shouldn't have had to, bless his heart and soul forever-

- Right.

- Agree to be that gracious, and... I have a particular knack for stuff that another parent shouldn't even be expected to have. So, anyway-

- Right.

- So anyway, I was able to say all that to the legislators and RDLA coordinates efforts like that, that hopefully can give back to other families, again, in our circumstances.

- Yeah.

- That's great.

- Gotta get past, yeah.

- So Lazer, what advice would you give to other young people living with a craniofacial or rare condition who might be struggling with their own self-acceptance?

- It's a little hard to say 'cause I think it's different for everyone. And one thing I would definitely say is join one of the support groups that like My Face hosts or Faces, which is one of the foundations that was really helpful to my family.

- Mm-hmm.

- 'Cause they have a whole bunch of resources on connecting with others with facial differences, with your exact condition if you want that or, but that was one thing that I didn't necessarily have a whole lot of growing up, but the moment that I met another person like me that had the same experiences in a lot of areas, that opens the door in the sense of, oh wow, no, I'm not alone in having these experiences and just 'cause I am different, it's not a bad thing. And, you know, I think that's one of the best, the best resources you can make use of. As well as just talking, sharing yourself. Even when it's hardest to be who you are, that's when it's the most important to.

- Mmm, I like that.

- That's beautiful, yeah.

- And Amy, what advice do you have for parents who have just learned the child has a facial difference?

- Well, I think now that the, like for example, My Face wasn't out and about in the public sphere-

- Right.

- When Lazer was little. Yay, now My Face is there and I'm constantly referring people to My Face because there are just so many resources.

- Right. Thank you.

- There's like, the ACPA, the American Cleft Palate and Craniofacial Association, they have vetted the craniofacial teams, and you wanna get to a vetted craniofacial team, especially if you have a more, if your child has a more serious involvement, you really want the top-notch pre-established team that you can get. The other thing is social media is really great. There are a lot of Facebook groups. The only, I have a hack for that though, and it's an important one. I see families getting on the social media groups and, you know, you're gonna have, as a parent, the uncomfortable experience of taking advice from a doctor who's never been in your shoes, and you also are gonna have access to parents, and you have to understand that even though they've been in your shoes in some ways, they haven't been in your shoes because they don't your exact kid.

- And I-

- Yeah.

- I see people asking other parents like, "Should I get the... "whatever, Epibulbar dermoid surgery?" And it's like, well, you know, Lazer's Epibulbar dermoid is not obstructing vision, it's to the side of the eye and it's not very big. So if I answer that and I'm sort of like just answering from what I know, I say, "No, "don't get it."

- Right. Right. "Our doctor said no." But, like, if it's occluding the eye and it's getting in, whatever, it's-

- Blocking vision.

- Blocking vision, right?

- Right.

- Then you should, so you have to sort of draw on your community and draw on your doctors and-

- Right.

- Really be with the decisions thoroughly, you have to understand that nobody is in your shoes. It's kind of a lonely road.

- Right.

- And even with Advocate Angel, you know, I'm reaching a hand, I wanna help, and like, I do what is called a... tiny challenge, and that is like a few sessions where I'm just listening and learning about you, 'cause every person in this situation, maybe you're not in a rural area, you're in a city. Maybe you don't have a good craniofacial team near you, maybe you do.

- Right.

- Maybe your Medicaid doesn't pay for stuff that my Medicaid does, because every state is different. There are so many particularities. So, get with people that you trust that can help you. And to second what you said, the support groups, that's the other thing I'm referring people to all the time, you guys as support groups. Oh my goodness.

- Thank you. Thank you.

- Our therapy, are you kidding me? Like, just being able to be around community.

- Right.

- It's priceless.

- Yeah, I really believe that having that community is so important because-

- Yeah.

- Again, if you know you're not alone and somebody... You know, you have a three-year-old who's in a hospital so much, but you're talking to a mom of a 6-year-old who's further along on that journey and a mom who's 10 years old and 20 years old, and they can see the future because I think so many parents can't see the future.

- Right.

- For the child, you know, and I think-

- I even had, so I had a family that I helped that, the man, who's now a young man, with a craniofacial difference had his vocal cords damaged in the last surgery, couldn't express, was isolated during Covid and no longer is served by the pediatric craniofacial teams, so care was an issue, and the degree of isolation of that is terrible.

- Yeah.

- And it... It's a simple thing that I said was, "Join a support group and you can type in, "or make yourself understood," because on Zoom, you know, people were-

- Got that ability.

- And that, just that simple thing, made a huge difference, even with, you know, different medical problems remaining, and different, like, these problems don't just go away like that. They're, you know, a long, a lifelong thing that you may have another question when you're 34. Right?

- Right.

- And you don't know any 34 year olds, so... Anyway, just being able to connect him to a group, that was awesome.

- Yeah. Yeah. Can you talk about a mentor support network that has been crucial in your journey at this point?

- Yeah, holy cow, I have the best mentor ever, that's Lazer's godmother. And if I, myself, had not had strong arms outside of our nuclear family to catch us and if Lazer had not had those strong arms, I literally don't know where we would be. I think it would be, we would be in a much different place, and we were just talking about that yesterday, because the impact of the isolation, and it's like a pressure cooker, it's a kind of a pressure cooker. And sometimes parents, you know, any parent, just is not like, they didn't come in with the skills necessary for the challenge in front of them. Like that's like the, almost the definition of parenthood, right?

- Right.

- So, this mentor is Anahata Graceland, and she like changed my whole life by making so much available. And even though she hasn't had craniofacial differences, she has had different genetic difficulties in her life, so just being like, you know, "I've been there. "Listen, let me tell you this. "You gotta do the Oreo cookie approach. "You gotta do joy on the front end, "then the difficult thing in the middle, "and joy on the other side. "And since you know you've got these appointments coming up, "schedule it, schedule the zoo, schedule the appointment, "schedule the kayaking," or whatever.

- Right.

- To have somebody like that is, this is the other part of my inspiration of being an advocate. I am blessed beyond belief to have had that. So, there's nothing like that, I tell you.

- Yeah.

- Yeah.

- And Lazer, who do you think of as your greatest mentor and advocate, if you have one?

- I would honestly answer the same. My godmother, Anahata, has been a very wonderful close friend, and, like, I'm forgetting the word, of course, "avid," there we go, avid supporter and like being able to relate to a lot of situations, interestingly enough, even though our cases are very different. And also just being a support to... remind myself of who I am in the more challenging times.

- It is really important thing because, like when you have a lot of mental, medical... intrusion, I'm gonna call it.

- Right.

- Like, and you're trying to level up at your own skills and abilities to navigate because you know that, you know, from here you're gonna have a better outcome. You're sort of in a rabbit hole, and if you're too far down the rabbit hole and you forget your regular life and what makes you joyful and what gives you strength, you can get lost there, and that's one of the things, having a mentor and having a community brings, is like, you know, what did, you know, what do you do to enjoy?

- Right.

- Or just, just focusing, you know, after all, Goldenhar is just one sliver of life. It's a big sliver and an important sliver.

- Right.

- But, but... there's all kinds of big excellent life out there.

- Right.

- And part the balancing act is to just be in the larger excellence of life as much as possible and be really good at the stuff you need to do in the medical and-

- Right.

- System.

- Lazer, I don't know if you feel this way, but I always, when I go into schools and speaking to kids, I always think about like how my facial difference is just one small piece of who I am. That I am so much more than my facial difference. I don't know if you've had that, but I really have come to realize that, that I'm just, that that's just is, at times, it's been a big piece, but it, I think as we get older it becomes a, we are so much more than our facial difference.

- Mmm. Yeah, totally.

- Yeah. So, looking ahead, what are your hopes and dreams for the future in the craniofacial and rare disease communities and what change do you hope to see?

- One of my hopes is that I could come in and join more in with the craniofacial, like, groups that you guys have. 'Cause even though like I've done pretty well, over here, we don't really have in-person support.

- Right.

- Over on the West Coast as much as you guys know on the East Coast, and so I'm really excited to be coming to the races walk or-

- Races For Faces.

- Yay.

- Yeah.

- Yeah.

- So I'm really excited to come and meet a whole bunch of you guys and come closer in with my people, and one of the things I hope to see more in the future as a whole is, see just more of us craniofacially different people being really successful with whatever they're wanting to do. Seeing media, seeing like models, seeing actors. You know, the one craniofacial actor, or difference-having actor that I've seen is Gaten Matarazzo, right?

- Right.

- And I didn't even realize he had a facial difference at first until my mom pointed it out.

- Right.

- And I was like, "Oh my God, one of us!"

- Yeah.

- Yay.

- Right.

- And-

- Yeah.

- So, I hope to see more of that because that was such a big part of feeling alone was not seeing anyone.

- Right.

- So, community and... having more of us out there is like great.

- Yeah.

- I feel like we've got-

- And like this podcast.

- A lot of work to do, but we're doing it.

- Dina.

- Yes, what?

- Yeah.

- Like this podcast.

- Yeah! Right.

- I mean, I was so touched when I learned about this podcast and just started seeing different people sharing their experiences.

- Right.

- It's almost unspeakable, just seeing people, and having it be normalized part of life.

- Right.

- It's precious.

- Yeah, and it's also always really wonderful to see like what interests that... people have outside of their craniofacial difference as well.

- Right.

- So that's always a reminder to me too, that you are so much more than your difference, like you were saying earlier, and seeing, like, I watched... the one you did with Naomi and Aaliyah.

- Uh-huh.

- And just learning like what they're doing outside of having the craniofacial difference is like really wonderful.

- Mm-hmm.

- Thank you, so last two questions that I'd love to ask. So what would you each say to your younger self, knowing what you know now?

- You got this.

- I would say, it's gonna be okay.

- Mm-hmm.

- That's what I'd say.

- It's like when I say, "You got this," it's like keep the faith, because you can't really see what is ahead. The doctors are gonna portray certain things, and unfortunately, psychologically, they're like, "This limitation, that limitation."

- Right.

- "This... "abnormality-"

- Yeah.

- And this lack of function and that, you know, these difficult, you know?

- Right.

- You can't reduce a person to that, and it's actually, you have to know that they have to cast it that way so that they can apply their measures of remedy, but that does not define your child, or you-

- Right.

- Or whatever, so keeping the faith is knowing that you will know more than you do now, you'll get better at navigating than you are now.

- Mm-hmm.

- You will use the information to make a better outcome and you will change the outcome and... you can totally defy odds knowing that.

- Right.

- So that's what "keep the faith is," and stay connected with people.

- Mm-hmm.

- So who do you see when you look in the mirror today? You can say it in one word, one sentence, a thought.

- I see someone who is almost done with the major part of the surgery part of their life, and that's something that I'm really excited for. So every new surgery, right now for me, is leading up to like the quote unquote, "finally, "final surgery."

- Good.

- But I probably will need a couple more in the future sometime, I don't know when, but the main bulk of my surgery days are almost over, which I'm really excited about. I see someone who's... looking forward to what's ahead, because right now I don't know, but I'm exploring my options and that's really exciting.

- Love that. Love that. So, thank you, Amy and Lazer, for sharing your story.

- Thank you.

- I am so inspired by your advocacy, your passion, and how you have, Amy, advocated for Lazer, and Lazer, how you've advocated for yourself, and what you're both doing, and so I can't wait to see what the future holds for both of you, actually, and I really appreciate that you have shared so much because I know that you're gonna help so many individuals who might be struggling with their own self-esteem or just the overwhelmingness of this medical journey, so thank you to both of you.

- Thank you, Dina.

- Yeah, thank you very much for having us on.

- Thank you. So Amy and Lazer are inspirations to me and everyone they meet. Everyone has a story, and I'm hopeful that by sharing stories like these, we can create a kinder world. For more than 70 years, My Face has been dedicated to changing the faces and transforming the lives of children and adults with facial differences by providing access to holistic, comprehensive care, education, resources, and support that pave the way for better outcomes. To learn more, please visit myface.org. If you would like to learn more about the My Face support groups so that you can connect with others in the craniofacial community, please visit myface.org/online-groups. Be sure to subscribe to "My Face, My Story" on your favorite podcast app and on YouTube to get notified of our next episode. If you'd like to receive email reminders of new episodes, sign up at myface.org/mystory. That's myface.org/mystory. Thank you for joining us for this episode of "My Face, My Story." Remember, it takes courage to share your story, so be brave and speak out.

On this month's myFace, myStory podcast episode host, Dina Zuckerberg, is joined by Chelsey Peat, born with Sturge-Weber Syndrome, and recently published author of her memoir, Two Sides to a Face. She will share her journey from childhood, marked by curiosity and challenges due to her condition, to her current achievements and advocacy work within the facial differences community. She hopes to serve as a beacon of hope, encouraging deeper understanding and acceptance for all who feel marginalized due to their physical appearance.

 

- [Announcer] Welcome to "myFace, myStory, Voices from the Craniofacial Community," with your host, Dina Zuckerberg.

- Hello and welcome to "myFace, myStory, Voices from the Craniofacial Community." I'm Dina Zuckerberg, your host and Director of Family Programs at myFace. Like many of you listening, I have a craniofacial difference. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "myFace, myStory" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. This podcast episode is made possible through support from the Integra Foundation, committed to improving lives. By the way, whether you're watching on YouTube or listening through Apple Podcasts, quick subscribe now, and we'll keep you updated on future episodes so you never miss out. And if you're a fan of "myFace, myStory," please rate and review the program on Apple Podcasts so we can get our message of inclusivity and empowerment to more people. Today I am joined by Chelsey Peat. Chelsey was born with Sturge-Weber syndrome, a rare condition that led to multiple surgeries, including a lifesaving brain surgery as an infant. Despite doctors predicting significant limitations, Chelsey has defied these expectations throughout her life. She graduated from high school and college, and she's currently pursuing a degree in sociology, alongside a certificate in diversity, equity, and inclusion. With nearly 40 years of personal experience living with a facial difference, Chelsey has faced and overcome numerous challenges, including discrimination and stigmatization. Her deep understanding of these issues is reflected in her work with various organizations where she educates and advocates for individuals with facial disfigurements, differences and disabilities. Chelsey's debut publication, "Two Sides of a Face," offers an inspirational narrative of her life. This memoir details her journey from childhood marked by curiosity and challenges due to her condition, to her current achievements and advocacy work within the facial difference community. The book explores themes of self-acceptance, self-love and resilience, highlighting pivotal moments that shaped her identity and empowered her to embrace her imperfections. Through personal anecdotes and her role as a mentor and public speaker, Chelsey's story in "Two Sides of a Face" is not just about overcoming facial differences, but about transforming adversity into advocacy. Welcome, Chelsey. I really look forward to our conversation.

- Hi.

- Hi. So glad you can join me today.

- Thanks for having me.

- You're welcome. So can you share with us the moment you first realized that your facial difference would significantly impact your life?

- I wouldn't say it was an exact experience. Growing up, I think everyone that grows up with a facial difference, you kind of just, you know that you're different once you're old enough to just, you just know.

- Right.

- But definitely going to school and those younger years, there was definitely times where for sure there were the points, the whispers, the stares, the awkward moments, you know, awkward conversations with grownups, noticing people looking a little too long, you know, all those awkward. Yeah, those moments where it was just less than respectful.

- Yes. I can relate to that somewhat. So for those that don't know in our audience, can you tell us about Sturge-Weber syndrome and how rare it is? If you know.

- Of course. Sturge-Weber syndrome happens approximately one in 50,000. Now kids nowadays can, I think it's one in 10, can be born with a birthmark of some kind. But Sturge-Weber syndrome is far more complex. Everyone always kind of takes notes when you say syndrome, and they automatically assume that that means we have some sort of disability or learning development, when that's not the case. It just means syndrome multisystem. So I don't have a regular birth mark. I have a hemangioma or port-wine stain. It goes far beneath the surface of the skin. And it interplays with blood vessel involvement through all the crucial organs and tissue on, for example, with me, in my eye, my brain, throat, sinus passages, ear canals, all that fun stuff.

- Wow.

- Yeah.

- I did not know that. So how many surgeries have you had?

- Well I had my one major brain surgery as a baby. I have had multiple eye surgeries for the glaucoma in my left eye, and I have had, oh, probably close to 100 cosmetic procedures on the birthmark.

- Wow. So what is the most challenging thing growing up for you? What was the most challenging?

- Trying to fit in, trying to make a friend, trying to have that inclusive aspect, you know. We, of course, at least for myself, you know, we were growing up having shows tell us, you know, everyone, if you look alike, you get along. And knowing, you know, that was never going to be possible for someone like me. It was kind of growing up realizing I wasn't gonna be that sweet princess that gets her prince, like all the movies told me that I should be. If I'm pretty, I'll get that magical kiss and I'll get my happily ever after. And you know, it's that instead you're siding with the bad guys in the movies because you understand their tragic backstory. You know, you kinda understand the whole aspect of everyone, all the Disney characters that were getting pushed to the shadows or, you know, sent to the outcast, you know, aspect. It was, yeah, you connected more with that. And I found myself, you know, "Phantom of the Opera," "Hunchback of Notre Dame," anybody with a scar or a burn, you know, I didn't like the heroes in most movies because I thought they were just self-entitled, you know, pretty people.

- Right. Right.

- It was, you know, more of those, oh my goodness, that poor person, you know, they went through this horrific thing. Well, they're the bad guy because they look different. So I must be a bad guy. I must be a villain. And yeah, it was having to try and break free of that.

- So how did all of that impact your self-identity, self-esteem, especially as a teenager? 'Cause that can be really hard, right? I mean, for anybody, but especially with a social difference.

- Yeah. The teen years were hard. I can definitely agree there. It was, you know, I tell a lot of people that's probably the hardest battle, especially for someone with a different or of disability, is the battle of self love. You know, you're basically every day getting up out of bed and being told by the world around you that you don't belong, you will never succeed, you aren't pretty, you know, things won't come easy. And it's trying to kind of break apart from all of that, push it all away and go, actually I'm not normal, yes, but my journey is gonna be far more exciting. So it was kind of that aspect of self-love and going, I get to have a far more exciting journey. It's not going to be like everyone else's. Instead I get to do things I know for a fact people look at me at awe with and go, "Wow." And, you know, using that more as motivation than you're a scary monster go away.

- So do you have a specific example of a story where you felt especially isolated or misunderstood?

- I can definitely, I can think of several, but I know for me, one bad example was, I grew up just perfectly, elementary school started one year and I'd already been struggling a little bit with bullying. And unfortunately a Batman movie got released. And it just so timed, yeah, it just so timed perfectly that the bad guy was the infamous acid-burn survivor Two-Face.

- Oh wow.

- And I remember the previews. I remember looking at him and connecting with him on a level, going, "I look like him. This is exciting." But then realizing that's not a good thing. And having the kids at school, the ones that had gone and seen the movie, you know, run up and start calling me that and with fingers and, "She's so bad." You know, "Oh, where's Batman?" And having that whole negative aspect of, "Yeah, you're the bad guy, we don't wanna play with you." And, you know, struggling with that for sure. Yeah.

- So how did you deal with that? I mean, it's interesting because I talk to kids all the time when I go into schools and I try to tell them what they can do if they're faced with this. But how, I mean, how did you address it or deal with it? Or did you? I mean...

- I have to bless my family at this point because they raised me so strong and resiliently. And I think that's such a crucial aspect is, you know, once you have a child with a difference, it's not only exciting that you've, you know, educated yourself and all of that, but it's also learning those great advocacy techniques so that you can start teaching your child how to educate and, you know, kind of jump in and say, "Hi," and start that conversation and make people see that we're not scary and all of that. And I know my mother, I bless, you know, I'm thankful that I got her as a mom because she taught me very early, you know, don't worry about the staring. Don't worry about the ogles. Walk up, say, "Hi." Start the conversation, let them touch it if they want to, you know, let them talk to you. Let them see that you are completely normal. You just have a few extra blood vessels. And that was me on the school playground, "Hi, I'm Chelsey. Wanna go skipping, wanna go play, wanna go do something?" And yeah, I still dealt with some people that were extremely awkward and couldn't handle it. But I think it gave me such tools to just kind of push past the awkwardness, deal with the elephant in the room.

- Right.

- You know, and get things done. Yeah.

- Yeah. I think sometimes, especially for younger kids, it's the unknown, the fear of the unknown. So you introduce them to it and they go, "Oh, it's not a big deal." It's just a part of somebody. And it doesn't work for everybody. But I do think there is that element of just introducing them to what it is. 'Cause sometimes they just, the fear is, I don't understand. I don't know why they look so different. And that makes me a little nervous or even a little scared. Right? And so, yeah. So what was the pivotal moment in your life where you started to have more self-acceptance? I mean, I think it's a journey. I don't think it sort of happens overnight, but is there a point in your life where you started to accept yourself more?

- I have to agree with you. It's definitely a journey. But I know one big piece of it for me was I had been going to the Boston Shriners Hospital and I was receiving laser treatments on my birthmark. And I could do that up until the age of 21. And my 21st birthday came and I knew I was done. I couldn't go back. I'd have to look for a private clinic. And there was so much trauma and stress with that, that I went, "Okay, Chelsey, well you've gotta either kind of grow into your birthmark or look more into makeup or look into a way to hide it or never leave the house again."

- Right.

- And I went, "I can't do that." You know, I wanna go out, live a life, do my things, you know? And that kind of pushed me into going, okay, well if I'm gonna go out, I'm gonna go out loud and proud and, you know, accept me for me. And it was definitely a journey. There were days, you know, you didn't wanna get out of bed or leave the house. There's still days, but it's, you know, dealing with that dark stuff to get to the light stuff again.

- Right. And so speaking about going out into the world, what motivated you to pursue your education and to do what you're doing now in terms of studying sociology and DEI.

- Growing up, I didn't see a lot of people like me. I didn't see a lot of people like me in important roles. You know, I'd gone back to school a couple times with things, I'd worked and then I got married and then I had kids. And I had two little faces looking up at me going, you know, "Mom, how do you do this?" And I went, if anything's gonna motivate me to be that role model, it's going to be all the cousins I grew up with, all the friends of cousins, all my siblings and my kids. And I look at my two daughters and I can look at them proudly and know that, you know, every little ripple that I make is for them. And they have in turn shown me so many instances where they're willing to get up and advocate for me or someone with a difference or disability. You know, and I know, okay, I did that. You know, I helped create that motion and that, you know, that's what should be done. Or those are the good ways to advocate or to talk about someone or deal with someone. Yeah.

- Do you think your kids are more empathic because of your experience or because you have a facial difference?

- Yes. Definitely. My 7-year-old iwears her heart on her sleeve. And she is the kindest, that's all the teachers ever tell me. And it's in her report card every time.

- Aw.

- And, you know, she's such a kind soul, but the fact that she will talk to someone and go, "I love your birthmark." And she'll have these conversations with people that I go, I wish someone had been there to have those with me. And I go... You know. Yeah. Yeah. Very impactful.

- Yeah, so I don't have kids of my own, but I do have a niece and two nephews. And I feel like because they grew up with me and all the things that I was doing, 'cause we did theater at one point, telling the story of our lives and all of that. And I feel like they are so much more empathic

- Yeah.

- Because of me. And I just remember even when they were little kids and they would tell me stories about how they did, you know, kind things or they saw somebody who looked different and they talked to them, whatever that was, you know, it was just, so I do think it makes a big difference. So let's talk about your memoir, "Two Sides of a Face" and your journey with Sturge-Weber syndrome. So what is the inspiration? Why did you decide you wanted to write it?

- People had been talking to me for years. You know, with all the adventures that I had had, and connections, and the rarity of my condition, and kind of my self journey. It kind of all just rolled into one. And I went, you know what? I think it's time. I think it's time I write some stuff down. And then taking note when I did start researching and looking into it, that there are only a couple books out for my condition. But both of them were told from parents' point of view.

- Mm. Interesting.

- And I went, that's great, but you weren't there dealing with painful treatments, or the bullying, or the interactions with people, or the biases in workplace practices, or, you know, all the things that I might've experienced. So I went, you know what, I think it's time. And you know, the more people with facial differences that get our stories out there, the more we can help the face equality movement along. So, I mean, I am pro that.

- Yeah. So how long did it take you to do from the moment you had the idea to being a published author?

- Probably about five years. Yeah. Yeah. Hobby on the side.

- And what has been the, I know it's recently come out, but what's been the response so far?

- So far it has been overwhelming, almost. The amount of people that have reached out and been like, I've actually had a few colleagues, even from like high school reach out and go, "I didn't know you were experiencing this or going through this," or, "life was so hard, you know, we just assumed." And I went, "That's the problem with assuming." You know, it's taking the time to kind of understand that, yeah, I'm different, I'm gonna experience my journey a little different than you.

- Right.

- And you know, people in the facial difference community have been so incredibly kind and sweet and sharing and, you know, proud. And, you know, it feels like I have family, extended family, now reaching out, kind of going, "We didn't realize your condition was so extensive," or that, you know, "the amount of work you're doing," or it's been enlightening and incredible really.

- Mm. I think about doing it one day. We'll see, I'll write my own story one day.

- Oh, I will buy the first copy.

- Oh, thank you. Thank you. So I know you are doing a lot of advocacy and what is the thing that you are advocating for? What is your impact of advocacy?

- Oh, several organizations. Of course, you know, Sturge-Weber Foundation, Vascular Birthmark Foundation. Here in Canada, we have AboutFace Canada, even Face Equality International, I work with them a little bit as well. All incredible organizations. The more work we can get ourselves out there, or the pun, you know, the more we can get our faces out there, you know, and be seen and be heard and be advocated for and be treated like anyone else, the more the perceptions and the cultural awkwardness and all of that can be worked on. So, I mean, for me, the more that we can kind of move towards working on critical things like diversity, equity, inclusion, workplace biases, bullying in the workplace, all these horrible stigmatizations that I know even just I have experienced, but I know many in the community have. You know, the more we can get the ball rolling on critical pieces to that, the better.

- Yeah, I feel like people don't necessarily think, you know, we talk about bullying in school and all of that, but they don't really necessarily think about how that translates the transition from high school into adulthood, whether it's going away to school, whether now you're advocating for yourself, your parents aren't advocating for you as much. And then, you know, what happens when you go into the workplace. I'm not sure that is talked about nearly as much.

- No.

- The other thing is, I think that facial difference, and I think it's happening more and more, but it's not really a part of the conversation when you talk about disability and all of that. It's just not part of the conversation. And I think, as a community, what I love is seeing that there's more of that happening. And I think FEI, Facial Equality International, is helping that. I think all the organizations working towards, there's more awareness I feel like, than ever before. And I think, in some ways I think "Wonder," the novel, and the movie helped that along somewhat. For sure.

- Yeah.

- 'Cause it was for me, and I think for many others, the first book that even talked about it in a very big public way. But I don't know what you think, but I feel like there's a lot more work to be done. I just wonder if we're seeing the change that we want, what do you think?

- Oh, I've just finished my certification in diversity, equity and inclusion, and I'm still working on my sociology. But even when it comes to academia, we do not have enough knowledge, if any, on any sort of aspect of disabilities other than these standardized, you know, couple categorizations.

- Right.

- Very similar to how the LGBTQ community feels where you have, you know, different representations that just aren't getting the coverage. Facial differences, we have barely scratched the surface. I know they're not mentioned. Doing personal work myself, just trying to look into the diversity, equity, inclusion aspect. So many organizations claim to be DEI-related. But none of them know anything about face equality, facial differences. You know, they go, "Oh, well are you part of a disability? Do you get coverage?" And I go, "I'm not disabled. No." I'm actually perfect. I'm, well not perfect, but I am abled enough that I don't classify myself as that.

- Right.

- Should that matter though? Does that mean that I get less support? As of right now, it does.

- Right.

- And that is heartbreaking for people, you know, like us that go, we need support, we still need help with things. Yet I have more human rights right now as a woman than I do as an individual with a facial difference.

- Correct.

- And if that doesn't hit people's heartstrings, I still remember hearing that for the first time and doing some research with my human rights aspect work. It was a slap in the face. It was heartbreaking to know that right now we have not made enough movement. And thank heavens for Face Equality International because they're working on it the little bit that they can. But we as individuals, that's where people can get away with so much workplace biasing and bullying and discrimination and stigmatization, because we do not have the support that we need.

- Right. Right. And on the flip side of that, I feel like people, I think, make assumptions because we look different. Oh, you're not smart, you're not capable. And then those biases translate into the workplace because then you get treated differently because those assumptions are made. And that to me is, I think, one of the biggest challenges as well. I mean, there's so many challenges, but I think that is one of the biggest ones of how do you change that? How do you change that thinking? Well, wait, I'm smart, capable, I went to school, I went to college, all of that. But people still make those assumptions. And I don't know if you've experienced this, but even growing up, when I was with my parents or another adult, sometimes they would even talk to them. It was like they talked through me. It's like I was in the room, but I didn't really exist. You know? So there's so much work to be done. But I'm thrilled that it's happening more and more. I mean, I don't know how old you are, but I am as old as I am and I feel like in the last few years we're really starting to see it. There's more and more talk about it and more coming together as a community and advocating hard.

- Yes. And I mean the more that we can do that, the more. You know, and that is the only, the only struggle that I see with us is right now so much of society is trying to break groups apart into littler pieces.

- Right.

- If all of us stick together as a community, you know, facial differences community, we are millions of people. So we can easily stand up and go, "Hey, it's about time people started taking notice of us in the right way." And we get progress moving in the right way.

- I agree.

- Yeah.

- So to our audience, I hope you're enjoying this episode of "myFace, myStory". Whether it's your first time joining us or you've been with us since the beginning, make sure you're subscribed to our YouTube and Apple Podcast channels and sign up for our mailing list at myface.org/mystory. So, you talked about earlier about being married and having kids and going to school and all of that. So how do you manage the life-work-balance as a student, professional advocate, wife and mother. I'm impressed, by the way.

- How I get sleep, that's usually what people, that's the first question they ask. "When do you sleep?" You know, and I laugh and I go, "I, somehow I'm still here." Advocating is always a crucial piece, but you know, of course end of the day my kids come first. That one's easy. Right now, unfortunately, due to workplace bullying, I'm not working. I was let go very unprofessionally.

- Mm. Wow.

- Looking for work, but that's okay, gives me more time for schoolwork and you know, kind of doing all my extra stuff now. It was actually perfectly timed with the book coming out. And right now it's more just kind of seeing where I'm needed and kind of going with the flow of things. Yeah.

- So I have to ask, because it's something I think a lot about, like how did you put your self out there in terms of dating and meeting somebody and all of that? 'Cause I'm really curious, because it's something that I personally struggle with a little bit.

- I think everybody does, but you know, especially for us, we're going to a little bit more because we're so stressed about not fitting that cookie cutter expectation of what the other gender or that other partner's going to need. For me, I was brave and I put myself out in a social situation. A group of friends went out and my husband happened to come with a friend and I had the courage to just kind of walk over and start talking with a couple people. And we chatted and then from there it kind of led to, well you know, do you have, this is gonna age me, "Do you have MSN messenger?" He asks me. And I go, "Yeah." He's like, "Well, do you wanna, you know, we can chat." And I'm like, "Sure, yeah, let's do that." And you know, one thing led to friends, to suddenly we were chatting almost every day to, "Hey, I'm going to the mall. Do you wanna come?" You know, and it was trying to gain that self strength and that I can do this, come on. To the next thing I know he's asking me out. And yeah, it kind of just went from there. I thank my lucky stars. And you know, it's having that bravery, that moment where you just go, you know what, again, heck with what society says, I have a connection, or I'm feeling this with someone and just getting the strength to do it.

- Okay, I'm inspired. Thank you. So what advice do you have to a listener who might be struggling with their own self-acceptance?

- Oh, first thing I would say is, especially with someone with a difference, is never feel that you are failing. Every day that you are getting up and you are taking a look at that mirror and you still have the strength to leave your house and do what needs done. You have exceeded more than the average person ever expected. From there, I would say that the hardest battle that you're ever going to fight is the one of self-love. And again, that is not something that will be cured or fixed in a day. That is a journey. That is, you know, finding that light at the very end of the tunnel and reminding yourself that if you only knew how incredibly special that you are, our journeys are far more extensive and elaborate and beautiful and different. And there isn't even strong enough word for unique.

- Right?

- That we should be celebrated and praised for the fact that we actually are accomplishing so much more than the norm. So it's just getting past those negative, indoctrinated, cultural setups that have been placed upon us and breaking free and just rocking it, you know. Being your own you and owning it and loving it and loving you.

- I love that. Somebody recently told me to own my power. And I think I just love that phrase. I keep using it. I'm gonna own my power today. So, yeah. And what advice do you have for parents who've just learned that their child has a facial difference?

- Oh, probably one of the strongest things that I know stuck with me with both my parents was, you're going to treat your kids like you would with any other kid. You're gonna treat them, especially when they're at home, like normal kids.

- Right.

- They want that normalcy. They don't want to feel like 24 hours a day, seven days a week, they are strange or odd. They wanna be loved for them. You're going to treat them the warriors that they are. You are gonna celebrate every accomplishment, love them, you know, but you're also going to know when to step in, and support them and be that shoulder because they're gonna come to you. They're gonna have days where they just wanna cry. Let 'em cry, let 'em scream out rock songs like my parents used to from their room.

- Right.

- And you know, be there as support. Know when to get them support and reach out to the community. Because a lot of us, especially us older generation, we are happily here for support, for questions, for love, to remind you you're doing an awesome job, because you are. And you know, connecting, family. We are extended family. We may not be connected through blood, but our experiences are so similar. We will understand every struggle that you're going through because we or our families have gone through the exact or similar thing.

- Like I always say, there's power in the shared story and knowing you're not alone.

- Yes.

- It's so true. I think we all think we're the only one, you know, we have times when we think we're the only one. And then when you find a community, whether you found myFace, any community, and you realize, "Wait, you had that same experience. I had no idea. I thought I was the only one." So I've seen it with parents, with individuals. The other thing I was thinking about, because you said you had siblings, right?

- Oh yeah.

- How did it impact your siblings having you with a facial difference, would you say?

- I know it affected them socially. I know there were friends and there were parents of friends that, oh, once they saw me or they saw my parents dealing with me, you know, they kind of pulled their kids away from my siblings. And you know, I actually have a spot in my book where, you know, I apologize to my siblings, because part of me felt bad that, you know, I may have affected them. But that's where it's so crucial as a family that you support one another. And you know that those siblings grow up to love one another and be strong and be a team. And if anything, my siblings probably brought me the most normalcy than, you know, any part of my world growing up. And you know, I still remember having the fights with my sister and you know, having my brother chase me up and down the stairs, and loving every minute of it because I felt normal. Nobody was talking to me about Sturge-Weber or birthmarks or seizures or anything medical. It was, "Chelsey, it's my turn with the game controller." And you know, it was that same, you felt like the kid in the TV and it was what we needed. So.

- Mm-hmm. So how has your experience as a public speaker and social media influencer, helped in promoting your message of inclusivity and diversity?

- Oh, the connections that I have made. I have had so many parents reach out and community members reach out. You know, people that didn't have the strength at the time to deal with what they were going through, that chatting with me, connecting with me, you know, reading some of my social media things, or even recently with my book, having a couple reach out after a book just to say, "Wow, you know, I get where you're coming from. I realize my struggle is similar, but I see how you got through it." And you know, I'm not trying to win gold stars. I'm simply sharing what I went through in hopes that I'm enlightening someone, or giving someone, you know, maybe they hadn't thought of something before and I've helped them reach a new point. So, you know, whatever support I can do,. Be the big sister that I wished I had growing up.

- Yeah. So speaking of having support, is there a mentor or a support network that has been crucial in your journey?

- Oh, there have been several. I know here in Canada, we have AboutFace Canada. They are an incredible organization. They have a wonderful program called the Peer Support Program, where individuals from the facial differences community can kind of connect with one another and you kind of get to sit down and chat. And I've been a peer now three times.

- Okay.

- And all three of my peers, you know, I feel like I've left them in such brighter positions than when we first met. And I thought that, you know, that's been life changing for me, knowing that I could make that difference. Along with the Face Out Project, wonderful organization, my friend Sora, actually, we all work together with that. And the amount of work that we're trying to do in the facial differences community has been enlightening and astounding. And, you know, the small progress that we can make, you know, you have that family, the support system of people that are going through similar things.

- Right.

- And we can touch on topics that, you know, not regular people usually discuss. So it's kind of nice to connect on that part. Yeah.

- Yeah, I have found that we have the adult support group and I have found the same thing is when the power of one, but the power of coming together and talking about things that again, we can't always necessarily talk about with family or friends and outside of the community. So, yeah. So, speaking of community, and you've kind of touched this, but the importance of being part of a community like myFace and how important that is.

- Oh, very crucial. You know, whether it's your organization, like if you have an existing condition or you join a support group because you've had an acquired facial difference, it's having that family and it's having the family that actually isn't connected or that, you know, isn't with you all the time, but understands every situation. Or you name a procedure and they go, "Oh, I remember getting one of those."

- Yeah!

- That was fun. Yeah. You know, it's, "Oh, and I had to deal with this." Or "Oh, I tried this new medication." You know, "Did you guys have this kind of side effect?" Or, you know, it's people that have gone through such similar things that you can have these most random conversations, that, yeah, family support is nice, but it's not the same. You know, your parents, your partner, they can try as much as they can to give you that hug and that support, but at the end of the day, unless I'm speaking to another person with Sturge-Weber, they don't understand laser treatments for birthmarks or eye procedures and yeah. It's that brother from another mother.

- Exactly. Exactly. So what are your future goals, Chelsey, in your advocacy work and personal development

- At this point it's, you know, getting out there as much as I can, sharing my story as much as I can, helping the face equality movement along as much as I can. Maybe another book. We're seeing, I'm trying not to fill the plate too full right now obviously. It's, you know, helping the face quality movement with the wave, you know, being that ripple, ripple starter. You are one as well. So, I mean, it's just an honor to connect with you. So that's where I'm like, ah! You know, it's whatever we can do to get out there in those positive moments and make those changes and know that, you know, the younger generations and the kids looking up to us go, "Wow, look what they've done for us."

- Yeah.

- It's making those hard conversations happen, bringing those elephants in the room forward. It's standing up and going, yeah, you know what, it's about flippen time people started taking notice in a good way.

- And I think we, especially for younger kids with facial differences, for them to see us and the role models that are out there. And look, we are thriving members of society just like everybody else. And I think for them, it is so helpful for them to see that because they can. And even for parents to see it, because when they have a 3-year-old who's, somebody, a 6-year-old, even, they can't see much beyond the future. And so for them to hear our stories, which is why I think it's so important to get our stories out there because I think they need that and yeah. So what would you say to your younger self today, knowing what you know now?

- I have thought about this and you know, there's days where I have like cried wishing I could just walk up to her. And especially through those teen years, I can picture her laying on the bed sobbing and I just wanna pick her up and I wanna give her a hug and I wanna just tell her, "Yeah, I know it's not fun right now, but it does get better. There is light at the end of the tunnel, I promise it gets so much better. Yeah, there's gonna be some struggles, there's gonna be a bunch of dark moments, but you're gonna shake through it and wipe away the tears, pop on some motivational music. Sing your heart out if you've got to, and stay strong, you know? Keep smiling. It's it's gonna get better."

- I wish I knew that then, 'cause that would've been really helpful. Honestly. I can relate. So who do you see when you look in the mirror today?

- Oh, I see a strong, confident woman. I see a woman who, almost in the sense of a true Gemini, my birthday's in May, so it works out perfect, but, you know, having one side of me that yeah, is strong and smart and coherent. And yeah, there's that little bit of a rebel side to me too, who also goes, you know what? I'm sick of being held down by very aged practices of what is okay and what is acceptable in society. I'm tired of being cast into the shadows. I would much rather be out in the light, being seen as a role model and being there in an image for all those kids and all those, you know, individuals that are struggling to see that, yeah, it's gonna be dark, but it's right there. You're so close.

- I love that. So before we wrap up, where can people find your book? "Two Sides of a Face"?

- I am available on Amazon, Barnes & Noble. It should be coming to Chapters in Indigo shortly. It is on Kindle. It is on Kobo. You can basically look it up online and you can probably find it.

- Okay. So Chelsey, thank you for sharing your story and your journey. And it has served as I think, a beacon of hope, encouraging deeper understanding and acceptance for all who feel marginalized in their physical appearance. And I can relate to so much of what you talked about today. And I, again, encourage everyone to read Chelsey's memoir, which you can purchase online. And I confess that since we scheduled this last minute I only just started reading it. But I love what I've read so far, so I encourage everyone to do so. So thank you Chelsey.

- Thank you.

- Okay. So Chelsey is an inspiration to me and everyone she meets. Everyone has a story and I'm hopeful that by sharing stories like these, we can make the world a kinder place. For more than 70 years, myFace has been dedicated to changing the faces and transforming the lives of children and adults with facial differences by providing access to holistic, comprehensive care, education, resources, and support that paved the way for better outcomes. To learn more, please visit myface.org. If you would like to learn more about the myFace support groups so that you can connect with others in the craniofacial community, please visit myface.org/online-groups. Be sure to subscribe to "myFace, myStory" on your favorite podcast app and on YouTube to get notified of our next episode. If you'd like to receive email reminders of new episodes, sign up at myface.org/mystory. That's myface.org/mystory. Thank you for joining us for this episode of "myFace, myStory." Remember, it takes courage to share your story, so be brave and speak out.

On this month's myFace, myStory podcast host Dina Zuckerberg is joined by David Cohen, recipient of the 2024 myFace Courage Award. David talks about the dark twists on his journey of hope to acceptance of his life with Pierre Robin Sequence to who he is now. He shares what he thinks should be happening to support children and adults in the craniofacial community.

Dina Zuckerberg: Welcome to myFace, myStory: Voices from the Craniofacial Community with your host, Dina Zuckerberg. Hello and welcome to Dina Zuckerberg: Voices from the Craniofacial Community. I'm Dina Zuckerberg, your host and director of family programs at myFace. Let me tell you a little bit about myself. Like many of us in the community, I have a craniofacial difference. I was born with a cleft lip, a hearing loss, and no vision in my left eye. myFace, myStory is about people like us being seen and heard about, sharing stories within the craniofacial community and with others. This podcast episode is made possible through support from the Integra Foundation committed to improving lives. By the way, whether you're watching on YouTube or listening through Apple Podcasts, click subscribe now and we'll keep you updated on future episodes so you never miss out. And if you're a fan of myFace, myStory please rate and review the program on Apple Podcasts so we can get a message of inclusivity and empowerment to more people. As we begin National Craniofacial Awareness Month I'm very excited about my guest today, the recipient of this year's myFace Courage Award. David Cohen was born with Stickler's Syndrome. One of the primary symptoms of Stickler is Pierre Robin sequence, a rare genetic disorder that stunts the growth of the lower jaw causing the person difficulties with swallowing and breathing. By the time David was 10 years old, he had undergone more than 10 craniofacial surgeries to correct this issue. David, welcome to myFace, myStory.

David Cohen: Thanks for having me, Dina.

Dina Zuckerberg: Yeah. So David, you've been on a very long what we like to call a journey of hope, which includes not taking no for an answer when the US Navy turned you down for service. So can you share with us, David, your earliest memory of knowing you had Pierre Robin sequence?

David Cohen: My earliest memory is probably, and this is thanks to the capturing of it when we did myFace video, but it was probably my second jaw distraction surgery when I woke up in the hospital.

Dina Zuckerberg: And can you say a little bit about what that was and what that was like?

David Cohen: I was about eight years old, if I remember correctly. It was my second jaw distraction surgery. And at that time in my life, honestly, the biggest challenges were the mental health aspect and the isolation that came with it. I remember being in second grade and always being taken out of class, being sent back to school after the surgeries with jaw distraction devices and people, especially the other kids not understanding what was going on. I wasn't able to play with other kids my age. So the isolation that comes from that was probably the biggest challenge. But I had a loving family and I was lucky enough to have the incredible angelic team of doctors and nurses that I had. So we get through it.

Dina Zuckerberg: So what were some of the challenges you faced in school? Did kids bully you? Did they stare?

David Cohen: Absolutely kids bullied me. At eight years old, people don't understand what compassion is. People don't understand what looking past physical appearances looks like. So having metal devices on your head, it just calls me back to a specific memory when I was in a playground in Central Park and kids kept their distance noticeably saying that I had lasers on my head, looking like an alien. And it's incredibly isolating, especially for a child that young when you don't understand end that it's not your fault and you internalize it. So it creates a bunch of shame messages that become part of your being. And also there's a lot of internal resentment both towards yourself. For me, resentment towards my family and towards, especially my mother as an older kid came up like, why was I born this way? And I wasn't even able to process that and that didn't even come out until I was 24 years old, which is how old I am now. So it really does create, using a building reference, it creates a building on a very, very rotten foundation that it takes a lot of work to clean out and rebuild.

Dina Zuckerberg: So how do you think those experiences shaped your identity as a person?

David Cohen: Well, it's still an emotional journey, and it is very much about resilience and that the challenges that I had as a child have given me some of my best, but also some of my worst qualities. I'll start with the worst, so I can leave the note on a positive one, but I was very emotionally immature and I'm learning now how to properly handle my emotions also back then and until very recently, I felt like I was a burden and I was just work for the people around me. And I am starting to learn that that's not true. We need to accept who we are. We need to accept that our craniofacial differences make us assets, not liabilities, which I'll touch on in a little bit with the military, but we need to realize that it's who we are, and that's nothing to be ashamed of. That's something I'm still working on now.

Dina Zuckerberg: Yeah, I can relate so much to what you're talking about in terms of the resilience and how, I think because of our experience, we had to constantly, I don't know if fight's the right word, but to push ourselves in a way that I think others outside of the community may not have to do in the same way always.

David Cohen: Absolutely.

Dina Zuckerberg: And I think that it is so much more about the emotional. I mean, somehow for me, the surgeries, it was sort of less about the surgeries, but more about the emotional piece, the social emotional piece that we have to contend with, I think in a way that, yeah, others don't.

David Cohen: Surgeries are physical, surgeries are physical pain. They are tangible. They are finite in time, and they pass. When you heal, you stop hurting. It's over. The emotional piece is the untangible, the emotional piece, the incomprehensible, because it's not visible. For the listeners who have seen the video that was aired at the gala where I was presented with the Courage Award, I touch on a piece of self-harm. I started self-harming when I was 10 years old. And the reason why I started self-harming is because I was no stranger to physical pain because of my surgeries. Whereas the emotional pain that we were dealing with, that I was dealing with was uncomfortable. It was strange to me, and I didn't know when it would end. So a lot of people who self-harm, the reason why a lot of people self-harm is because it takes an emotional pain and converts it into a physical one, one that's tangible, one that you have control over. And that was one of the biggest things that I had to kick. And one of the biggest things that was detrimental to my self-esteem was the fact that I was still self-harming. And while it helps deal with the emotional pain, it also reinforces it. So in order to stop, in order to help yourself heal, you first have to let go of those negative patterns that reinforce that negative pain.

Dina Zuckerberg: Right. Yeah, that makes a lot of sense. So how did your family, because I really believe that when you have a child with a craniofacial difference, it does impact the whole family, including the sibling. And I know you have a sister. How do you think it impacted the rest of the family?

David Cohen: So my sister was born when I was six years old. Part of that resentment piece that I touched on earlier, especially if the sibling does not have a craniofacial difference and is born, as I like to a boring normie, it creates that resentment towards your sibling as well. For me, what it looked like was when my sister was born without a craniofacial challenge, to me, when my parents now are paying attention to this seemingly perfect newborn baby, that gave me the message that I only get the attention when I'm sick. I only get the attention when something is wrong with me, because at that point, I wasn't going through surgeries. And then to reinforce that message when I was eight years old and I had my second jaw distraction surgery, the attention went from my sister straight to me because we were doing the video, I was in and out of hospital. So that sort of was the nail in the coffin for that specific shame message. It also created a lot of resentment towards my sister because she, to me, to the six-year-old me, she was the one who took away the attention, the love from my parents. And the reason why it's stronger for people in the craniofacial community is because the attention that we need is so much more because there's a medical aspect to it. So the delta between the attention that you have and the attention that you don't, between, to boil it down into simple terms, sick and healthy is huge. And when you throw a sibling's birth into the mix of that, that is an existential factor that is, for us, makes it very easy to just zero in on that and use that as the cause of that [inaudible 00:12:59]. And in turn, to go back to your question, Dina, in turn, that causes a lot more stress on the family because now there's a innate sibling rivalry that it's not solvable by an existential solution. I mean, my relationship with my sister only started getting better when I left for college at the age of 17, the better half of 17 too, I was almost 18 when that happened. And we have a lot to work on. There's 18 years, or rather 12 years of trauma to work on that, that we need to sort of unbuild and rebuild.

Dina Zuckerberg: Yeah, I think trauma is very real for people especially in the craniofacial community, and it's something I think about often how that impacts so much of your identity. Yeah, so David, I think you appear so confident now. How is that? I mean, let me just preface that also by saying that I didn't have, in my opinion, nearly the confidence that you have at your age. So how do you think that is or why that is?

David Cohen: So the military definitely increased my level of confidence as sort of a trial by fire. My first confidence lesson that I failed miserably was when my first day at work in front my division of sailors, I was a division officer in the Navy, so I was an officer in charge of 16 sailors. And the first confidence lesson was when I was standing right in front of my division, all people older than me and everyone had more naval experience than I did, but I was supposed to be in charge of them. And that shakes a person. You're being asked to tell someone what to do when you have absolutely no idea what the job entails. So that's what I meant by trial by fire, you have to learn on the job, learn as you go, and you also have to have that self-respect to be able to admit, respect for yourself, but also respect for the people you are interacting with, to be honest and to say, I don't know, please teach me.

Dina Zuckerberg: Can you take us back, David, to when you wanted to join the Navy and what happened?

David Cohen: I decide that I want to join the Navy, this is a little known fact, but I guess it will be much better known now, I did not originally want to join the US Armed forces. When I was in high school I wanted to join the IDF, the Israeli Defense Force, like my father and my grandmother before him. And my father, because I was graduating at the age of 17, I needed my dad's signature to be able to sign up for the IDF before my 18th birthday, he wouldn't sign. So in a rebellious move I went to a US Armed Forces recruiting office and said, "I would never join the US Armed forces, but just to say that I tried all my options, I'm going to go and see what they have to say." And I came out with an ROTC package. And I started doing ROTC. When I joined college, I went to George Washington University, which had one of the best Naval ROTC units in the country. And I was awarded a scholarship, I was awarded a contract.

Dina Zuckerberg: So how did you go about getting, because I know you dealt with rejection and they weren't so eager to take you so quickly and you had to get people to say that you could serve in the US Army. Can you share a little bit more about that?

David Cohen: Yeah, because of my craniofacial difference, part of the screening process is medical. So you have to give up all of your medical history, and for me there was a lot, as I'm sure you can imagine, and they got daunted. And they started diagnosing me with random, completely unrelated stuff. Most notably I think they diagnosed me with gastrointestinal disorder, reflux disorder, which I'd never had ever in my life. And so I had to start getting a bunch of letters from doctors, Dr. Flores saved my bacon when it came to this because he wrote me letters basically saying there is no reason why he shouldn't be able to serve and Dr. Flores at the time being one of the most notable experts in this field, he was taken as a subject matter expert and I was allowed through. But yeah, I mean, it's rough. You're born with something that you have no control over, and you're born with something that you didn't choose. It's not like mom went to a baby vending machine and plugged in a Stickler syndrome, cleft palate, all of that stuff. We have no control over this, our parents have no control over this, but something that you want to do with all your heart and something that you feel like you're made to do. I committed to the US Armed forces with my entire being, and I still do. I mean, I'm a veteran. I'm proud of my service, and I'm proud to have served alongside so many wonderful men and women, brave, our nation's bravest human beings. And it's an honor. But when you feel like you're made to do something and something that you have no control over stops you from doing that, it's heartbreaking.

Dina Zuckerberg: Yeah. I thank you, David, for your service. So I was just thinking as you were talking that what's I think really hard is to dispel, if I'm saying this right, the perceptions that people have about people in the craniofacial community, whether it's you're not smart, you're not capable, I think that. So how do you think we can, or society can work to change that? I think education is certainly a piece of it, but I'd be curious to hear what you think.

David Cohen: So the biggest one that I've noticed, especially in my interactions with other beautiful capable members of our community is that we look different. And that is the biggest, for craniofacial challenges, it's not as physically hidden as say, autism or another learning disability. So first of all, as you can see, I am not visibly obviously a member of our community, but I have a little bit of a conundrum where to, as I like to call boring normies, I don't look normal enough, but to members of the craniofacial community, I look normal. And so I should be an example to the rest of the world that you never really know. And it's important to be sensitive to this community, just like we're sensitive to people with learning disabilities. The craniofacial community, we come with challenges of our own and we don't need the rest of the world to pile onto that. And how do we combat it, I completely agree with your point about education. I also think that members of our community need to be comfortable taking a stance for themselves. And when we take a stance for ourselves, especially because many members of our community, especially those who are born with craniofacial difference like you and me, the hardest part is when we're dealing with peers, especially at a younger age. So our schools need to support members of the craniofacial community unquestionably.

Dina Zuckerberg: I agree.

David Cohen: There needs to be undying support from our school administrations. I'm incredibly lucky, I went to a Jewish day school and the value base of that school was zero bullying. It still happened. One million percent I was bullied relentlessly, but my school was supportive. They did conflict resolution. The whole nine. My school, without having not gone to the school that I went to, my experience would've been 10 times worse. But I would be remiss to say that all schools are supportive as mine, but they should be. And then in terms of the rest of the world for adults, we need legislation that protects us as a community, just like it protects any other minority community or any other member of the, so-called disabled. I hate the word disabled, but that's how we refer to it in our society. But it is a challenge that we face that takes a little bit longer to get through and takes a little bit more work on our part and on our family's part, but that is no reason to believe that we can't do exactly everything that everyone else can do, sometimes even better.

Dina Zuckerberg: I agree. And I think that sometimes I think we need to educate adults more than we do kids sometimes.

David Cohen: Absolutely.

Dina Zuckerberg: And I also believe that having a craniofacial difference needs to be a part of the conversation. I feel like it is not currently part of the conversation-

David Cohen: Oh, a million percent.

Dina Zuckerberg: ... especially around disability, although I know you don't like that, but around all of that, we are not part of the conversation at this very moment. I think we are moving in that direction because there are so many advocates like you and me and others that I think are bringing it more to the forefront, but I think there's a lot more work to be done.

David Cohen: Oh, absolutely. And something that you said, Dina really resonated with me. Kids need to be educated, but there's only so much that a child can actually internalize. How is a child educated? How is a child taught to be compassionate? By the behavior of their parents, by the behavior of the teachers, by the people, by the adults around them who they decide to model after. So if we can educate parents and teachers, that's how we educate our children. We don't educate our children by sitting them down, "This is what craniofacial difference looks like." We need to be nice to this person because [inaudible 00:25:52] even didn't even though they look different from us. That's not how it's supposed to be. In fact, honestly, in some situations it would actually isolate us even more because we become that person who we have to be nice to because they're different. We don't want that. We are the same as everyone else, we just have different... Our challenges just come in different boxes. That's the only difference. Our challenges make us assets, not liability.

Dina Zuckerberg: Right. I love that. I love that.

David Cohen: Because of my craniofacial difference, I'm a more compassionate person, I'm a more resilient person, and I'm more measured in my thinking than the average 21-year-old was graduating college and joining the service. So I was able to use those lessons to be a better naval officer and serve my country in a better way.

Dina Zuckerberg: Yeah, I feel the same way. Yeah.

David Cohen: In no way was it a challenge. In no way, sorry, it challenged me, in no way did it make me a liability.

Dina Zuckerberg: Right, agreed. I feel the same way. I feel like it gave me all those qualities that you just talked about in a way that, because I think because of what I went through, it made me a more compassionate, kind, more resilient for sure individual because of my experiences.

David Cohen: You are definitely a force to be reckoned with Dina.

Dina Zuckerberg: Thank you. Thank you. So to our audience, if you are enjoying this conversation with David Cohen, there are more myFace, myStory episodes coming to you to enjoy. Please be sure to subscribe to our YouTube and Apple podcast channels and sign up for our mailing list at myface.org/mystory. You gave an amazing speech at the myFace Gala, in my opinion, and you also performed at the gala. And one of my favorite moments, David, was witnessing you interacting with one of the kids and really being a mentor to one of these kids. When I was hanging out with you before the gala started and just watching that connection, what was that like for you?

David Cohen: I'm assuming you're talking about Joseph?

Dina Zuckerberg: Yes.

David Cohen: Awesome. Yeah, first of all, Joseph, if you're watching this or either of his parents are watching this, Joseph is a perfect example of the kind, warm-hearted person that represents who our community is. And being able to honor that and being able to foster that and nurture that kindness and showing that his kindness isn't shown as weakness, and that he's not going to be treated differently or be pitied for his craniofacial difference, I was able to give him what I wish I had had from a member of our community. And I'm not saying that my community failed me, not at all. The myFace community is the reason I am still standing and I was able to accomplish what I was. But if we had a more tightly-knit interactive community when I was a child, I feel like I would've been a lot better off than I was, and I would've had a lot less independent individual work to do growing up. But yeah, it's always heartwarming to see a little kid just be able to look past his own challenges and say, "I'm not going to let this get in my way," and just have a grand old time. It was amazing.

Dina Zuckerberg: Yeah, it really was. It was an amazing evening. And what you just said about, I feel like I didn't have that tight-knit community for sure when I was growing up and I think that was the basis for why I do the work that I do today, because I want the children today to have the things that I didn't have when I was growing up, that support the resources, in the same way. I mean, I had some of it for sure. So what advice do you have for others struggling to get into a career they choose because of their difference?

David Cohen: Short and sweet, and I'll elaborate on this, don't take no for an answer. You are an asset, not a liability. One million percent. I mean, by letting your challenges get in the way, you are doing yourself a disservice and you're doing the world a disservice because you're not sharing your own greatness with the world. You're not using your experience and your tenacity to make the world a better place. I can rattle off a few names of examples of what happens when we allow our challenges to better the world instead of keep us back. Naomi, a friend of mine who's a makeup artist, she does amazing work and she supports our community every day by doing so. Recently this year we have a finalist in Miss New Jersey as a member of our community, Aliyah. Seeing what can happen when we allow our challenges to propel us as opposed to hold us back, it's a beautiful, beautiful thing. Austin, who's a craniofacially different artist, he allows his "disability", I use that word because one of my favorite songs of his is Disabled, he allows his craniofacial difference to come out in his art and in turn help other people, other members of his community. And I am beyond honored and privileged to call myself a community member alongside them. So use these people as inspiration. Don't let your difference hold you back, and in turn deprive the world of your own greatness.

Dina Zuckerberg: David, I love that. It's perfect advice. So now, what advice do you have for parents who have just learned that their child has a facial difference?

David Cohen: If I could say just model my mother, I would. I was so privileged to have a mother who was able to find a balance between being there to support me and turning over control to the medical experts and the psychological experts. My mother, I can't speak for her especially because I'm not a parent, but I can only imagine how difficult it is to turn control over to professionals and give them control over your child and your child's wellbeing. As a parent, I can only imagine that's incredibly difficult to do. But my mom was able to do that, and while doing that, she never stopped being by my side, being there to support me. She was at every doctor's appointment, every myFace shoot. She was a constant in my life, and she was a constant of compassion and of protection, which goes into the other piece. So number one, please don't for one second think that admitting that you can't do this on your own is admitting that you're a bad parent. There are people who've trained for years on how to help craniofacial difference and allow those professionals who have that training to make our lives better, to save our lives, to minimize the long-lasting damage. On the second part, which is being there for your child, the most important part that my mother did for me was she was relentless in her defense of me, no matter how crazy she came off, no matter how unreasonable people told her she was being, my mother never, ever let up when it came to defending me against bullies, against schools. She was a force of nature. And having someone like my mother and seeing my mother go to bat for me and always being there for me, reinforced my self-worth and reinforced my knowledge that I am loved. I am love, I am loved, and I'm lovable. So please relinquish control to the professionals, but also go to bat for your kids. It doesn't foster weakness, it just shows them that they're worth it.

Dina Zuckerberg: Yeah, I have a parent group, and when the parents, the moms, I tell them because they worry about their kids and they worry that they're doing a good job and I watch them and I just think... I tell them, "You are such incredible advocates for your children and that your children will remember that always." And just what you were just saying and what I say all the time is that the support that my mom gave me, I still remember to this day when she sat in the hospital after I had, recovering from surgeries and everything that she did for me, I still remember that to this day. And so I tell them that because I think they worry so much that they can't quite see the future and they're in the now, in the moment. So yeah. So why do you think a community like myFace is so important?

David Cohen: Because we're niche. We're very unique. We are not a one size fits all. But we're also very unique as a community, and there aren't really resources out there in the normal infrastructure of disabled resources. So because of that, myFace is the one stop shop and needs to be the one stop shop. Therefore, because it is one community, I think the fact that we don't have separate communities for [inaudible 00:38:07] and all of the other craniofacial differences, it makes us more unified. So being able to have the myFace community be for the entire craniofacial community, it is so incredibly eye-opening and strengthening. That's on the internal piece, on the external piece, without the myFace community, there's no advocacy. And we need the MyFace community to advocate for us in Congress for legislation, but as well as a unified front to educate the world at large, society at large to what craniofacial difference is and why it should be honored and respected and not shied away from.

Dina Zuckerberg: Right. And also for people to understand that having a craniofacial difference is just one piece of us that we're so much, I think was so much more than our difference.

David Cohen: Absolutely, one million percent. And that's what the education piece is all about. It's all about showing, like I said, we come in all different shapes and sizes, but it doesn't define us. We're not defined by what we have, we're defined by what we do, and we should be able to take our challenges and let them impact our actions for the better, not stifle who we are and what we do.

Dina Zuckerberg: So David, what's next for you? What's on the horizon?

David Cohen: Honestly, I have no idea in terms of my day job, however, I'm going to be a avid advocate for the myFace community and the Craniofacial community at large. I have made such incredible friends, a few of whom I've rattled their names off in the session of this podcast. But yeah, I'm going to commit my life to making sure that our community is well represented and well-supported.

Dina Zuckerberg: And I look forward to working with you, David, on that because it's something I too am very passionate about. So last question, who do you see when you look in the mirror today?

David Cohen: I still see a little bit of a cracked mirror, and I'm trying to repair that. But who do I see now? I see someone who is able to overcome a challenge and prove to a highly bureaucratic organization that sometimes the rules in place aren't the best ones to follow. Sometimes we need to rewrite the rulebook a little bit. I'm not saying that the Navy's rules aren't meaningful and they're not there for a good reason, they are. They're there to make sure that people who serve our country in the most stressful situations can handle those stressful situations. But I'm here to show that I see in myself someone who is able to take the rule book and push past it for the better. I see someone who loves to help members of his community and who wants to give back. But I also, like I said earlier, see someone who has a lot more work to do. Our journey of hope is never ending, and it's important that we as a community support each other's journey of hope.

Dina Zuckerberg: I always say we're always on that journey. Somehow, I think it never quite ends, but it is a journey from the day we're born until we're older and hopefully wiser. So David, when you spoke at the myFace Gala, this stood out for me when you said, "We are a beautiful and able community, and that's what gives us strength. That's what gives us courage. Together as a community, we are unstoppable." And David, I think you are truly unstoppable, and I can't wait to see what the future has in store for you.

David Cohen: Thank you, Dina.

Dina Zuckerberg: Thank you. Thank you for sharing your journey with us. David's joy is an inspiration to me. Everyone has a story, and I'm hopeful that by sharing stories like these, we can create a kinder world. This podcast is just one of the many programs developed at myFace, a nonprofit organization that has been supporting the life journeys of individuals with craniofacial differences for 73 years. From the myFace Center at NYU Langone Health, to online support groups, to the myFace Wonder Project, created to increase visibility, awareness, understanding, and kindness among school-aged children and delivering new mothers of babies with cleft lip and palate special care kits. myFace believes every individual has value and the world is stronger when every person, no matter how they look, is valued, respected, included, and empowered to achieve their greatest potential. Have a great day, and remember, it takes courage to share your story. So be brave and send me your thoughts, go to Www.myface.org. And be sure to subscribe to myFace, myStory on your favorite podcast app and on YouTube to get notified of our next episode.

 

 

On this month's myFace, myStory podcast episode, host Dina Zuckerberg brings you an inspiring conversation with Megan Gaydosh and Tiffany Kerchner. Both Megan and Tiffany have turned their personal experiences with facial differences into powerful advocacy work, promoting self-love, acceptance, and awareness. Together, they discuss the importance of visibility, advocacy, and support for those with facial differences and disabilities. Their stories highlight the strength found in community and the transformative power of embracing one's uniqueness. Tune in for an insightful and uplifting episode that celebrates resilience, courage, and the belief that we are truly stronger together.

- [Announcer] Welcome to "myFace, myStory: "Voices from the craniofacial community." With your host, Dina Zuckerberg.

- Hello, and welcome to "myFace, myStory: "Voices from the craniofacial community." Whether you're watching on YouTube or listening on Apple Podcasts, click subscribe now so that you'll never miss a future episode. And if you're a fan of "myFace, myStory," rate and review the program on Apple Podcasts so that we can get a message of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the Director of Family Programs at myFace. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "myFace, myStory" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. This podcast episode is made possible through support from the Integra Foundation, committed to improving lives. Today, I will be joined by Megan Gaydosh and Tiffany Kerchner. Megan, a former special education teacher, is now a birth doer. She loves to sing and write song parodies to inspire self-love and acceptance. She was born missing the seventh cranial nerve on her left side. While having a facial difference once held her back for pursuing her dream of becoming a singer and actress, she now confidently affirms that anything is possible and that differences only make us more of who we are. Tiffany is a nurse by day and a facial difference advocate on social media. She uses her platform to educate and spread awareness for the social injustices that her facial difference community faces every day. She was born with a rare neurological disorder called Moebius syndrome, which causes the right side of her face to be completely paralyzed. In her spare time, she enjoys reading, hanging out with her dog and cat, and tending to her houseplants. She believes it's time to break beauty standards and showcase more individual with physical differences, disabilities, and other medical complexities. Welcome, Megan and Tiffany. I really look forward to our conversation.

- Hi, so happy to be here.

- Yeah.

- Hi, thanks for having me.

- Yeah, so let's get started. Megan, can you share a bit of your personal journey of growing up with a facial difference?

- Yeah, like you said, born paralyzed on my left side, missing a facial nerve. And it was always something that I felt needed to be fixed or was always hoping for some surgery or something that would make me feel and look normal. And in my teens, I did have a two-part nerve graft surgery where I did get some more movement on my left side. But I found that even having surgeries that still was not going to look like most people, and that even having those surgeries brought more questions and comments about scars and how long is it gonna take to smile normally and just kind of added some extra layers of insecurity, actually. But I'm glad that I did it because I think I probably would have wondered what if, if not. But I think in realizing that my face is going to be different for my whole life, it felt kind of crushing in my teen years and then into my like adult years, making connections with my family and with other people with facial differences and finding that community and seeing them as so beautiful helped me be able to then see that in myself and just sort of completely reframed how I see my difference. Like now I feel like it's kind of like a superpower, like I can make a difference with my difference instead of feeling less than because of it.

- It is freeing, right? I mean, when you can just be out there and sharing who you are without needing to hide it or being uncomfortable with it. And I think it's definitely a journey. So Tiffany, I imagine you can relate some and can you share with us your personal journey?

- I feel like I should be talking about how traumatic my childhood was because there is the trauma of being hospitalized frequently. There is the trauma of the negative stigma against us and going out in public and then being bullied in school. But I was a pretty happy child despite everything. I think between the ages of two and 16, I had 13 surgeries. Despite all of that, I was still happy and I did still as happy as I was, I did have that shame about my appearance. I started growing my hair out and I started wearing it a certain way so that it wasn't as visible when I was out in public. And like Megan said, I would hope and pray like one day I'd get a phone call like, "Hey, we're gonna do the surgery "and you're gonna look like everybody else." And that day never came. And I carried that shame with me. And I think just when I started getting like more onto social media and I started seeing more people with facial differences and I'd be looking at them and I'm like, "Wow, they're so beautiful. "Like look at that woman, she's so beautiful." And then one day it clicked and it's like, "Well, if she's beautiful with a facial difference, "why can't I be beautiful with a facial difference?" And then I just started seeing my difference as this, I almost feel like it's a gift because it's made me the person I am. And it's given me this community of people. It's given me a lot.

- I always say it, right? There's power in the share story and knowing you're not alone. And when you find that community, it really does make a big difference to realize, "Wait, I'm not the only one that felt that way. "I'm not the only one that thinks this way."

- Yes.

- So Tiffany, why did you want to become a nurse?

- As I said, I spent a lot of time in hospitals, in doctor's offices. When I'd have surgery, I'd spend a couple of days up to like weeks at a time in the hospital recovering. And some of my surgeries, I would have drainage tubes coming out of my head and face area or wherever they operated on. And it would just make my hair this like matted mess and just from laying in the hospital bed. And it was the day I was being discharged and I had my nurse and her name, I still remember her name was Brittany and she was wearing a butterfly on her shirt. And I will never forget her. She came in to go over the discharge paperwork with my parents. And then she said to me, "Why don't we go take a shower "and I'm gonna fix your hair "so you can look really pretty to go home." And she washed my hair and she put my hair in braids. And I was like, wow, like she didn't have to do that. Like I know how busy her job is. I know she has more important things to do yet she took 20 minutes out of her day to make me feel good. And that really inspired me to want to do the same thing for other people.

- Megan, I know you were a special education teacher and now you are a doer. If, I don't know if it did, but did your facial difference influence your choices?

- Yes, because I really wanted to empower kids with disabilities. And it was sort of in that job where I did kind of start to make the shift of like, 'cause I would talk to my students and tell them, anything is possible. You can do anything. I would like show them slideshows of different people with disabilities who are famous. We would have these conversations of like, you can do anything that you want to do. And then I would kind of internalize that and be like, why can't I tell that to myself? 'Cause I definitely haven't done the things that I wanted to do, because I felt like that was not possible looking the way that I look, to audition for something or to put myself on stage. It was just always so terrifying. So I feel like in special education, it kind of helped me send that message to myself. And I did really, really love being a special education teacher. And then I just had my own children and found I did not have the time. I didn't feel like I could do both well or have patience for my own kids at the end of the day. And so that's kind of how I shifted to the doula role, because no matter how many babies I have, I will have baby fever. And it kind of helps me get the baby fixed. And in giving birth to myself and being postpartum, I really thought that I knew what to expect and realized I had no idea. And just wanted to help other women have an easier time through that process.

- How did your journeys lead you to become advocates now? And was there someone or something that inspired you to want to share your story and messages with others?

- Started for me on TikTok. It was about three years ago. And I was just scrolling, staying up late. And I just thought, there really is something for everybody here. I wonder if they're, I just searched facial paralysis, facial differences, and I just found multiple people in the community. And I just had this big aha moment of like, okay, these are my people, I want to join them, I want to do this too. And then yeah, the next day, I just started posting about my story. And I had posted before, but nothing about my face or my story of living with a facial difference. And yeah, finding that community kind of made it feel like a safer space, like I wasn't alone. Even if it didn't go well, I had these people in my corner. And the more I've done it, the more connections I've made. And like Tiffany, it's one of my, we call each other soul sisters. Because we have just so much in common and can relate to so much with each other. And yeah, it's just really cool to feel like you have this whole community supporting you.

- And Tiffany, did you have anybody who inspired you or what made you decide that you wanted to do that?

- I did have somebody who inspired me and her name is Megan Gaydosh actually. Similar kind of story, I had been, I think I joined Facebook in like 2007 when Facebook came out. And then when Instagram came out, I joined Instagram and I was posting, mostly just like my personal life, like pictures of going out with friends. And then I started learning more, like if you want to get more followers, you should post about like the same, one thing. And it's like, okay, so should I post about my plants? Should I post about reading books? Because I read a lot of books. It's like, yeah, I could do that. And it's like, but there's a lot of those out there. And then the same thing, I joined TikTok, I think in the pandemic, I think when everybody did. And I remember like, I was just scrolling on and Megan comes on and she was doing a parody of a Megan Trainor song. And I was like, oh my God, this is awesome. And I was like, wow, like people are making videos about their facial difference. And I'm like, this is it. Like, this is what I need to do. Like, what better for me to talk about than my life? And so then I started making videos and people started commenting like, yes, this is so relatable. And it's like, oh my gosh, yeah, like this is what I need to do.

- I feel like you both by doing that, you give voice to others to feel that they can also share. I mean, look at the two of you, right? Megan did that and then Tiffany, you're like, oh, I can do that too, so.

- Yeah, I hope so, yeah.

- And can I just also say that I didn't have, well, you're somewhat younger than I, that I didn't have nearly that confidence or desire to do that at your age. Of course, I didn't have social media then either, so. So what are some of the social injustices you have encountered and how have you addressed them?

- There's just such a stigma around facial differences between the media and then that translates into real life. I was called two-faced in school and deformed girl and constantly reminded that my difference was something to be mocked or something undesirable. And even just going out with friends, we went to a makeup counter at the mall once and everybody was getting their makeup done and she didn't wanna, she wouldn't do my makeup 'cause she was worried about my eye, I can't close my eye all the way. And that was just, as a preteen, going out with your friends and then just, it was so humiliating and I felt very discouraged from makeup at that point and was like, oh, maybe I shouldn't do this. Finding other people in the community wearing lipstick and emphasizing their differences. I always stayed away from anything that would highlight it and different, like Naomi, different creators who have all these amazing skills. I was like, okay, actually, I am gonna wear the lipstick. I am gonna do my makeup how I want but it's just like the injustice is everywhere all the time. Majority in the media and I think that's the biggest thing that we are trying to fight against is like, yeah, having a facial difference doesn't... We're just like normal people, you know? Can we just not see any more villains?

- Right.

- And like, yeah, or like a pity story or yeah. We just need more representation and inclusion to just show us who we are.

- Absolutely, I can totally relate by the way to wearing makeup and always feeling like that it's accentuated my differences. And I just believe it or not, just starting to get much more comfortable with it and having Naomi and for those who don't know, Naomi is a makeup artist and photographer also born with a facial difference and having Naomi do my makeup recently has, and then looking at it and going, wow, like so beautiful. But like, I never felt that comfortable with it. So yeah, it's definitely something that it's grown on me to realize that I can wear makeup. And one of the things is always my lips. Like I feel like if I accentuate my lips then people will see the scar.

- Yeah, I mean, there's a lot of social injustices I think that come along with having a facial difference. Everywhere you go, you get stared at. It just feels like I can't go anywhere without people staring at me. And it's like, oh my gosh, like I just wanna go grocery shopping one time and not have everybody staring. And I feel like I also didn't get jobs that I was more than qualified for. And I was actually told during an interview that you're very qualified that you don't have the look that we're going for.

- Wow.

- And it's funny because at the time I didn't even think anything of it. I was just like, okay, like maybe they wanted a blonde person like maybe they wanted a blonde girl, but I was like, all right, maybe it's my curly hair. I don't know. And then later on I was like, oh, it's because of my facial difference. And yeah, like Megan said, being portrayed in the media as villains, as the outcast, like the Quasimodos, the Freddy Kruegers, it just adds to that negative stigma. And it's why children I feel like are scared when they see people like us because that's just the norm in our society. And it just needs to stop. They need new ideas.

- So I know this is a big question. So what do you think we can do to change it, to improve it, to shift the way we think about these things?

- I mean, I think we're doing it. I feel like we're in a point of change, like little steps forward, which then can sometimes feel like we're taking steps back when we see facial differences portrayed in that way again. But I think everybody advocating is what's going to bring change. Like the more people that call it out and say, "Hey, actually, this is very harmful to those of us living with facial differences." And I do feel like, even with Disney, including in their show "Firebuds," the character with the cleft lip, little things like that are starting to become, I think, more accepted. And what I think is so cool about that is that character in the show is just a character. It's not emphasized that they have a cleft. It's just, this is a person that exists in the world. And I think the more that we see that, and it's not like, "Wow, look at what they can do even though they look like this." And it's just, "This is just a person living their life, hanging out with their friends, doing normal things." It is such a small piece of who we are, and there's so much more to tell. And I think we're heading in that direction, hopefully, little by little.

- Absolutely. It is a slow process for sure. But I do, I feel like it's happening. There's things that are happening.

- I agree. I think it would be awesome to see a movie where the main character has a facial difference, but it's a romance movie. And it's not about her having a facial difference. It's just, she just happens to have a facial difference and she's in this romance. And I think that it needs to start, like the education needs to start when there's babies and there's children and they need to be educated. Like, "Hey, there's people out there that look differently. There's people out there that have disabilities. There's people out there in wheelchairs. There's people out there that use walking aids." And maybe making, I've seen more toys out more recently than like when I was a child. Like I've seen dolls that are in a wheelchair. And I think like that is definitely a great step forward because it gets the kids like thinking. And then once they encounter somebody in real life, it's not like a shock. It's like, "Okay, I know all about this." And there's several children's books out there. I think that's the right step is to start teaching the little ones.

- And I always, when I talk to the kids, I think about that a lot when I go into schools and getting them when they're young because then it's like, "Oh, it's no big deal." It's just, that's a part of who somebody is. Just like somebody has glasses or they have whatever it is. And I also love seeing when they wake up to realize, "Oh, wait, somebody else has hearing aids like I do. Oh, that is so cool." That too. And so I think getting kids, I agree, getting them at a young age to be exposed to all kinds of differences just helps put everybody in some ways on an even playing field. It's just like we all have differences. And I always emphasize that too, that we all have differences.

- Right.

- And how boring the world would be if we were all the same. To our audience, I hope that you're enjoying this episode of "myFace, myStory." Whether it's your first time joining us or you've been with us since the beginning, make sure you subscribe to our YouTube and Apple podcast channels and sign up for our mailing list at myface.org/mystory. Can you each share a particularly impactful moment or story from your journey as an advocate?

- Probably connecting with myFace is like kind of the first time that I got to see people in person that looked like me or that just got it, you know? And there's just something so healing and comforting and just exciting about getting to be with people for the first time that really understand you in kind of this unspoken even way. And yeah, getting to participate in myFace Celebrates last year and then again this year. But last year was my first time getting to be in person with people with facial differences. And it can feel very isolating and kind of lonely when you don't have those relationships. And so even though it's nice to have it from afar and talk to those people to be in person is just such a gift. And yeah, so I thank myFace for that.

- And what was it like for both of you to get up on stage and perform at myFace Celebrates?

- Amazing.

- It was, it was, yeah. I used to, I did a lot of performing as a child. I was actually involved in the choirs and I did dance and after high school that stopped and I wasn't performing on stage anymore. But so it took me back to that and it was, I was nervous, but it was so incredible. Like Megan said, just making those connections, knowing that this person knows what it's like, they get it. And just to be able to do that and maybe show other people like, "Hey, I can do this too. If she can do it, why can't I?"

- So what advice do you have for parents who've just learned that their child has a facial difference? Tiffany?

- I would say, don't get all hung up on the comments that you see on people's, 'cause I know, I've heard from other parents that when they first learned about their child's condition, they went on the internet, of course, to research and then they found social media accounts of people maybe that have that same condition and the comments that people leave are just awful and that's putting it nicely. And I think just, as hard as it is to just kind of brush it off, 'cause it is hard, find that, try to find that community, try to find that us, like those of us that notice, like, "Oh, we will support you." And make connections with organizations like this and I think that's what I'm trying to do with myFace. I think that having that connection is gonna make a world of difference.

- In what ways do you think society can better support individuals with facial differences and promote inclusivity?

- I think that kind of goes back to like, a combination of showing kids differences, making that just normalized, and like in all children's books and shows and so that it's more accepted and not like this mystery, the curiosity is kind of, like I understand we're, as humans, we're curious, but the more that kids are exposed to these things at home and not just out in the world, it can reduce the stares and questions and things like that. And then hopefully translate also to the media to just also represent people with differences in that way as well, to just normalize it and make it, like the more representation there is, the more normalized it becomes, the less stigmas we have attached and hopefully younger generations with facial differences will have an easier time accepting themselves and feeling confident to just be who they are. You know? Yeah.

- So Tiffany, I was just thinking, when a parent is out with a child and another child says something, so your child says something about somebody who has a facial difference or any difference, how or what do you think a parent should do or say to help facilitate that conversation or that? Because I think what I hear too often is parents saying, shh, don't say that, you shouldn't do that. And what that does is almost creates a negative response. So what do you think a parent should do or say to help that?

- Yes, I agree with that. And that's the same experiences that I've had is, you know, you hear, shh, don't say that, don't stare. It's not nice to stare. And I agree. I think that that does make it a negative impact on the child 'cause now the child is afraid they're gonna get in trouble.

- Right.

- And when really they're just curious. And yeah, I think the dialogue needs to start at home and it needs to start putting that idea in their brain. And I think it's like when children ask me, I always say something kind of like, well, you know how like some people have blonde hair and some people have dark hair or some people are born with maybe nine fingers instead of 10. And then I say like, I was born with, and I tell them about Moebius syndrome and what it is. And I just am like straightforward with them. And I think that's a great way for parents to address the situation. And I always recommend the book "Wonder" of course, 'cause I know the author wrote that book because she had that exact situation where she almost like shushed her child and told him not to stare. And then she realized after the fact that that was not the right way to approach that situation.

- Yeah, I mean, as a parent, I think, like I understand the, I think they're embarrassed, you know, I understand that desire to just be like, stop, stop, stop. But then, you know, also being somebody with a difference. I think it's just, you know, say hi. Like, you know, like, yeah, aren't they, yeah, aren't they pretty? Or like, yeah, you wanna talk to them?

- Yeah, I agree with that.

- Not to make it seem like, don't look at them, don't ask questions. But that's also why I think it's so important to just do that, as much exposure to differences at home as possible so that there's less of that when you're out in the world. Like my kids have so many books on differences. And so when we do see things out there, like, you know, my six-year-old just commented like, they have a facial difference, you know? I'm like, yeah, isn't that cool? So just, yeah, just humanizing it, understanding that kids are gonna be curious and that's okay and it probably is gonna make the person feel more uncomfortable to like shush them and make it seem like they're not there than to just like acknowledge them. Like I used to, when people would stare at me when I was younger, like I would just stare back, to try to make them feel as awkward as it felt for me. And then as I got older, when that would happen, I'd just like smile and wave. Try to realize that that probably wasn't the best tactic, even though it felt like, oh, you wanna stare at me? You see how it feels, but just smiling, saying hi. And then they usually smile back and then it's fine.

- And I remember just walking away or wanting to turn away and not answer them and then as I got older, especially now, even with little kids 'cause I realize that they still stare, they notice. And like you, Megan, I'll just turn and smile and say hello and sometimes that's just okay, that works. So if you could give one piece of advice to your younger self, what would it be and why?

- That's a great question. I think I would tell her to learn how to love yourself, to make time to do things that make you happy because, you know, you can't control what other people say or do. And I truly believe that if you love yourself and if you embrace yourself and your difference that it doesn't matter what anybody says because that's just, you know, people have their own opinions based on their own perceptions of things they've experienced in their own life. And yeah, I think like once you learn to love yourself, it's just what other people say about you doesn't really matter.

- Yeah, I would tell little me that nothing about you needs to change for you to love yourself and to pursue the things that you wanna do. But yeah, you are perfect just as you are.

- Yes.

- Go get 'em.

- Yes.

- So who do you see when you look in the mirror today?

- Badass.

- Love it.

- Yeah, yeah, I see a warrior. I see somebody who's fought many battles and yet I'm still here and I'm still trying to make the world a kinder place.

- Love it. So thank you, Megan and Tiffany. You both are so beautiful and your beauty shines through. I am so grateful to have advocates out there like the two of you because I didn't have, as I mentioned earlier, half the courage to advocate for others when I was younger. So there's no doubt in my mind that you are impacting so many lives, including mine. And so thank you again for sharing your journeys with us.

- Thank you.

- Yes.

- Likewise.

- Yeah.

- Dina, you are making a lot of change now. So even if you didn't have that when you were younger, you're making up for it now.

- Thank you. I'm trying.

- Yes, I agree with Megan, yes. Thank you, thank you for having me and you are such an inspiration to me too, Dina, because I see you doing things and I'm just like, that's amazing. So thank you for being you.

- Thank you. Now I'm gonna get teary eyed.

- Big love fest.

- Thank you. Bye. Megan and Tiffany are an inspiration to me and everyone they meet. Everyone has a story and I'm hopeful that by sharing stories like these, we can create a kinder world. For more than 70 years, myFace has been dedicated to changing the faces and transforming the lives of children and adults with facial differences by providing access to holistic comprehensive care, education, resources and support that paves the way for better outcomes. To learn more, please visit myface.org. If you would like to learn more about the myFace support groups so that you can connect with others in the craniofacial community, please visit myface.org/online-groups. Be sure to subscribe to myFace, myStory on your favorite podcast app and on YouTube to get notified of our next episode. If you'd like to receive email reminders of new episodes, sign up at myface.org/mystory. That's myface.org/mystory. Thank you for joining us for this episode of "myFace, myStory." Remember, it takes courage to share your story. So be brave and speak out.

This month on the myFace, myStory podcast, Dina Zuckerberg welcomes Melissa Tumblin, a passionate advocate for the hard of hearing and deaf community. Melissa, the founder and Executive Director of Ear Community shares her remarkable journey—from navigating her child's microtia and atresia diagnosis to leading pioneering research efforts and advocating tirelessly for legislation like Ally’s Act.

 

- [Announcer] Welcome to "myFace, myStory: "Voices from the Craniofacial Community," with your host, Dina Zuckerberg.

- Hello and welcome to "myFace, myStory: "Voices from the Craniofacial Community." Whether you're watching on YouTube or listening on Apple Podcasts, quickly subscribe now so that you'll never miss a future episode. And if you're a fan of "myFace, myStory," rate and review the program on Apple Podcasts so we can get our message of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the Director of Family Programs at myFace. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "myFace, myStory" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. Today, I will be joined by Melissa Tumblin. Melissa Tumblin is the founder and Executive Director of the Ear Community Organization and the Microtia and Atresia Support Group on Facebook serving the microtia and atresia community. She's an advocate for the deaf and hard-of-hearing community, and a hearing health activist, and assists on many boards and councils including the NIDCR, National Institutes for Dental and Craniofacial Research; the Friends of the CHHC, Congressional Hearing Health Caucus; and on the advisory board for a biotherapeutics company working on 3D printed regenerated ears. She has presented accredited presentations for audiology, educational organizations, and has also presented at many hearing-device-manufacturer meetings, microtia and atresia surgical conferences, and at the FDA. She launched the Microtia and Atresia Clinic at the Vanderbilt University Medical Center, and champions genetic research for the microtia and atresia community as a co-investigator on a whole genome sequencing genetic research grant with Harvard, Vanderbilt, and the MIT Ford Institute. Melissa wanted the children and adults in her community to have a special day, so she established National Microtia and Atresia Awareness Day taking place every November 9th. She's the recipient of the Family Leadership Award for EHDI Excellence, and the Oticon Medical Advisory Award, including the Legacy Award for helping the microtia community in South Africa. She has over 20 years of experience in marketing, medical devices, and electrosurgical equipment, and holds a Bachelor's Degree in Biology and Psychology from the University of Colorado Boulder. Welcome, Melissa. I really look forward to our conversation.

- Thank you, Dina.

- Yes. So can you share the personal journey with your daughter, Ally, and take us back to the day she was born and how you found out about her diagnosis?

- Of course. Well, first, Dina, thank you so much for having me on the podcast today. It's quite an honor. I appreciate everything you do. And there need to be more Dinas in our world.

- So thank you.

- Thank you.

- So as a parent, you know, we are very excited to start families and have children. And on the day that Ally was born, to our surprise, and I apologize if I get a little emotional, but, you know, I had quad screenings done. I went to all my ultrasounds. I did everything right as a mom carrying a child. And to our surprise, Ally was born missing her right ear. And as a mother, the first thing I did was blame myself. I thought, "Oh no, you know, did I really eat something "or drink something that I wasn't supposed to "that I maybe didn't know about, didn't show up on a label?" Because I was good. And in the delivery room, you know, I delivered Ally via C-section. My husband was the first to see her. And I just remember him coming over to me saying, "You know, there's something a little different "about her ear." And I didn't know what that meant. But when they brought Allie over to me, I saw her sweet, beautiful little smile and her beautiful face. And I was just so happy she was with us finally. And we were just definitely surprised during our delivery. And we did ask our doctors, you know, "Do you know why her ear's missing, or what happened?" And there was silence in the delivery room, which caused a little bit of concern for us. So we didn't understand what had happened. So that was our experience, even though we were so excited that she was here.

- So for those who may not know, can you explain what microtia and atresia is and then how rare is it?

- Absolutely, so first of all, this is my daughter Ally.

- Sweet.

- And as you can see, her right ear is missing. And she has a little crooked smile. She has slight craniofacial microsomia because the one jawbone is shorter on the other side. And when children have microtia and atresia, they're often missing ears. And so, when a child is born without an ear, the ear canal is typically missing as well. So that results in hearing loss. And here in the United States, it's a 1 out of every 6,000 births that this happens.

- Okay, so it's pretty rare.

- It's very rare. And it's rare enough to where it's not typically on most doctors' radar. So oftentimes, families deliver children, and this was our experience as well with the majority of our community. The doctors really just don't know what to tell you. And you feel, you know, a little lost. You know, when you're told something's rare, you think, "Gosh, are we the only family in our state, "you know, with a child like this?" Or, "What doctors can we go to?" And sometimes they just don't often have all the answers. You end up going through a lot of doctor's appointments trying to piece together the puzzle pieces.

- So how did this lead you to become an advocate for the hard-of-hearing and deaf community, particularly focusing on your experience with microtia and atresia?

- Yeah, so when I was marketing medical device equipment, I was a product manager. And I was over, you know, technical equipment in the OR. And so I learned how to be an advocate for the patient in the OR, and to also help the surgeon, you know, make sure everything was okay. And when I had my own children, I think I was surprised that there wasn't someone there to advocate for me. So this came out in me, and I quickly realized that if we didn't get the answers from our doctors, there must be many other families that are struggling along the way as well. And so, that led into me creating a support group on Facebook. And that support group's called the Microtia and Atresia Support Group. Until this day, it is the largest support group out there. And within a year, we already had 1,000 people join from all over the world. And what was crazy to me is that it was the same stories. It didn't matter if you were from the UK or Mexico or, you know, wherever, it was the same questions. Like, why did this happen? Did I do something during my pregnancy? Will my child be okay? Will they be picked on or bullied? And, you know, what's a BAHA? That's the specific type of hearing device that our community uses. And just all kinds of questions. And I couldn't believe it, that we know so much about the ear and hearing loss in today's world, that all these families have these questions.

- Yeah. And I was gonna say there really is that moment when you realize, "Oh, wait, I'm not the only one."

- Absolutely, absolutely.

- That there's whole community of people that feel the same way, that have the same questions. Yeah.

- And also, you know, when I started my support group, Dina, I had to think long and hard before I hit that button to create it that I'm going to put my child out there, you know, to try and help the community. And so I had a lot of thoughts go through my mind before I started that. And here we are today, a nonprofit organization and the popular community for these families to find. Because they all feel lost and alone.

- Mm-hmm.

- Yeah.

- So tell us about the Ear Community Organization that you started.

- Yeah, so Ear Community is a nonprofit that serves the microtia and atresia community specifically. And our organization started just after I started the support group, so around 2010. And I was encouraged by some of my now sponsors to create a nonprofit. It would be easier for them to work with me and help because we have events and, you know, we donate hearing devices and try to help those in need within the community. And yeah, I never thought I'd be running a nonprofit, but here we are.

- And you do it well from what I've seen. You're doing an amazing job.

- Thank you, thank you.

- And you have a small staff, right? It's just basically...

- Yeah, I'm pretty much a one-woman show, Dina.

- That's what I thought.

- And I do have one employee that helps me with our events. And yeah, we're very grassroots, but it's where it starts. You know, it's from the passion and in recognition of seeing what your community is lacking and what it needs. That's where it begins.

- I always say that. It's like, what does the community need and how do we fill that gap for them? Yeah.

- Absolutely. And you wouldn't know unless you're a parent or an individual that is experiencing the struggles along the way.

- I agree. So speaking of struggles, what are some of the biggest challenges faced by individuals with microtia and atresia? And how does your community support them? And you've touched a little bit on this, but...

- Right, yeah, of course. Thank you for asking. So, with Ear Community, our individuals have different struggles. And you know, they all kind of vary on different levels. So you can have individuals that are missing one or both ears. So some of them can still hear if they have a unilateral hearing loss. And then there are others where both ears are missing. They're completely deaf unless they have a hearing device on. When the ear canals are missing, you know, you have these challenges faced at the very beginning as a baby, when parents have to choose, you know, we're gonna use baby sign or try to adopt sign language and make sure that your child has another means of communication. But in addition to that, some of our individuals in the community also have craniofacial challenges. And so, that's craniofacial microsomia. A lot of times when you have unilateral microtia and atresia, the one side, the jawbone's slightly shorter than the other. That causes many, many tooth extractions for children along the way over the years. As they develop and get older and their bone structure develops and settles, many of them have TMJ, which is temporal mandibular joint syndrome: locking jaws, chewing problems because the teeth aren't aligned. And so this is a whole thing among our community. And most importantly, it's finding confidence within yourself and finding that, you know, self-acceptance and self-love if you don't have that right circle of friends. So there's a whole psychological component to our community as well. In addition to, these children and adults are perfect and beautiful in every way, as far as I see it. They can go on and they can go to college. They can start a business. They can become whatever they want to be in life. But as you know, society and the public can be cruel. And it's a lot of challenges along the way with just finding self-acceptance.

- Yeah, absolutely. So how do you approach collaboration with medical professionals, researchers, and other organizations to advance the cause of the deaf and hard-of-hearing community?

- Right. Well, specifically this began with microtia and atresia. The atresia part is the hearing loss part for our cause. But originally, you know, I started wanting to bring these families together. So I'd host events. And that's when, you know, the hearing device company saw, "Wow, this is amazing." And as I mentioned, so many of our family members, we feel lost and alone. These families didn't have a place to go. I mean, there are resources out there, but not everyone knows about all the resources. And not everyone specifically caters to certain causes. A lot of times, we have a combined community where we have a lot of individuals that make up the same dissimilar situation. But in our case, people started coming to the events. They found them incredibly priceless and walked away with a newfound self-confidence, a sense of belongingness. So basically, a whole community had been created through our events. And the individuals that attend know that they're in the same situation, the same boat as everyone there. And our events are a day for these children and adults where they're not stared at. Everybody's the same. And it's a place and an opportunity or time to fit in, and at the same time be educated, get all your questions answered. And so at our events, you know, we include fun for the kids. It's a magician, a face painter, a balloon artist, no matter how old you are. I absolutely see adults get tattoos, everything on their faces and enjoy. But we provide lunch. And we have, you know, anaplastologists that make prosthetic ears, and the hearing device companies. We have medical professionals that mingle. It's just a relaxed opportunity for events. And it was much needed. Because, as I mentioned before, these families will end up going through 10, 12 different doctor's appointments, Dina, trying to find the answers. And depending on who you go to, your second or third or fourth or fifth opinion, you know, that you get from the doctors, it can become incredibly overwhelming for these families. And just trying to figure out who do you go to, and what kind of help do you need at what time?

- Right.

- Yeah.

- That's why the community is so important, right?

- Community is everything, Dina.

- I agree, I agree.

- Oh my goodness.

- I think about it all the time, yeah.

- Yeah, I know you do.

- So could you explain what Ally's Act is, the significance of this legislation and your efforts to get this legislation passed? I know you're about to embark next week on it, right?

- Yeah, next week, the second week of May is basically our flight in week in DC. So we'll be traveling on, you know, Capitol Hill. And we have a bunch of meetings scheduled and we'll be advocating for our bill. But before I dive into Ally's Act, I just wanted to explain. When I created Ear Community, I wanted to make sure we talked about all options and that families were educated on every single option, not just some, you know, that might've been mentioned in an appointment or something that they just didn't even have a chance to be informed about. And so it's always been our organization's mission to offer everything. So in addition to the hearing devices, I've realized along with that for the past 14 years that I've been running Ear Community, I have watched family after family be denied these hearing devices.

- Yeah, it's a huge thing, right?

- Yeah, and while others are covered. So it's kind of a mess with private insurance. And sadly, it comes down to oftentimes the representative you have on the phone or, you know, how well the ENT or audiologist office is able to fight with your claim versus if they have to enter an appeal process or not. And so, you know, hearing is everything, Dina. It is a part of everybody's everyday life. It allows you to go on and be independent, have a life, have an income, thrive in your community. And to not have that available when technology does exist is awful. And what's even worse is when private insurers make the final decision over what your doctors say. And so during this month, it's the month of May, which is now National Speech-Language-Hearing Month, which used to be known as Better Hearing and Speech Month. So during the month of May, Ally, my daughter, for a homework assignment in third grade, she was asked to reach out to the community and see if they wanna, you know, participate in like meal drives, cleaning up trash alongside of, you know, the highway or in the neighborhoods, and/or write to a lawmaker about a cause that you care about. And so she wanted to write about our bone-anchored hearing device and how hard it is to get. And so that is how Ally's Act started. We wrote to our congressman, and he wanted to help Ally advocate to hear better. And so he wanted to honor her by naming this federal piece of legislation after her called Ally's Act. And when this bill passes, every state will benefit from the spill services for bone-anchored hearing devices and cochlear implants. And it's an amazing piece of legislation. It has everything in it that is needed. It provides the upgrade for the devices every five years, the accessories, the services behind it with an ENT and audiologist. And when you're ready to have the device implanted surgically, it will cover the cost of surgery as well as the postoperative care appointments and speech therapy. So it's everything that's needed. And it will help children and adults from birth to 64. But this bill's five years old now.

- Huge, huge.

- Yeah.

- Huge piece of legislation that needs to get passed.

- It does.

- So if people wanna get involved, how would they get involved?

- So we do have information on our website under the Ally's Act menu tab. But what is important to know is that people can write and they can ask their congressmen and their senators to please co-sponsor Ally'S Act. And then you put that session's bill number. So for example, this session which is every two years, this session's bill number for the House or Congress member is H.R. 2439. And for the Senate, it's S. 1135. And so these are the members that serve you over your zip code. These are not state level representatives. These are House. These are national lawmakers that are your representatives. You just write a letter; you speak from your heart. You can email them, you can call them. You say, "I have a family member that has this, "or is affected." You don't even have to have microtia and atresia. For example, with Ear Community's Ally's Act covering cochlear implants and bone-anchored hearing devices, this could help an individual who wakes up tomorrow and suddenly they've lost hearing in one ear. And sadly, a regular hearing aid is not gonna be strong enough or help them. You could have someone who was in an accident and had head trauma. There are viruses like meningitis, things that cause people to lose hearing. It can quickly deteriorate and show up when you least expect it. So these devices, BAHA and cochlear implants under Ally's Act, would help those individuals as well.

- To our audience, I hope that you're enjoying this episode of "myFace, myStory." Whether it's your first time joining us or you've been with us since the beginning, make sure you're subscribed to our YouTube and Apple Podcast channels and sign up for our mailing list at myface.org/mystory. So Melissa, how do you, because I don't know how you do it as a one-person operation, but how do you balance your role as a mother, advocate, and a leader of the Ear Community?

- Yeah, so the whole work-life balance is a constant struggle, I think, for a lot of people. And I just luckily happen to have a lot of energy, Dina. And, you know, with my organization's passion and behind everything we're trying to do, I have an intense passion for helping our community, including my own daughter. And so together, I have learned to fight for her, to fight for others. And I just find a way to get it all done. It's not easy. It does take a lot of hours. I think most people, and you probably know this, Dina, anyone who runs a nonprofit, they're a different kind of individual. It requires a lot of, lot of work. And you're often doing it all on your own. And you may not have enough resources, you know, whether it's funding or staff. And you just do the best you can. And oftentimes, when there is an organization that has those individuals behind it with the very passion, those organizations are incredible. You know, they kinda speak for themselves with what they end up doing. Like for example, after having Ally and wondering if I had done something as a mother, you know, during my pregnancy, I didn't want another mother to ever blame herself, thinking that she must have done something during the pregnancy. And so I embarked with some researchers from MIT, Vanderbilt and Harvard. And yeah, we found new genetic information. And so it is hereditary, it's genetic. It's on chromosome 3 specifically for microtia and craniofacial microsoma. There is increased risk of this happening time after time, even when you have two parents that have a child where the parents are not affected but the child is. And I just wanted to make sure that mothers knew, you didn't do this. You know, depending on where these families are from, there's a lot of ethical and religious struggles that go behind what happens when a child's born. And a lot of these mothers end up struggling. They get the blame of the family, you know, and it's not their fault. It really is a genetic issue. And so we have new information. And our organizations publish those papers. So this is part of that passion that I'm talking about is we can't always wait for things to happen. And sometimes, you do things a certain way that nobody else would do but you. And so it's very important with these organizations that the individuals running them and behind them, it's the true cause that they understand.

- I remember, it reminds me of when I joined myFace 10 years ago and I said, "I never wanted any child "to go through what I did growing up." And that's why I wanted to do the work that I'm now doing. So, yeah.

- And your work's incredible, Dina. Like I said, we need more Dinas in this world. Because not everyone is going to be brave enough, you know, like you, and have that passion and drive to really want to make that difference. And to put yourself out there, it can be very frightening. You know, I don't know about you. I've talked with other, you know, organizations. And there's trolls. There's people out there that they're just not very nice and they just like to try to ruin a good thing. So thank you for what you do, Dina.

- Thank you, and likewise. You're doing amazing stuff too for this community. So thank you. So what advice do you have for parents who've just learned that their child has microtia and atresia?

- Right, so when a child is born with microtia and atresia and the family is getting used to their new baby, they're tired and they're scared all at the same time, please know that everything is gonna be okay. Chances are, in the next like six months after or following the birth, that family will be doing their research. And sometimes, they can become the expert on what their child has even over going to see the doctors. Because they will have sifted through information in and out. And they will know exactly, they'll find good information on our website. And it's honestly a wealth of information that is needed. And to just know the steps. You may not be told who to go to at first or what to do. But once you have a child with microtia and atresia, they'll be screened for hearing. The doctors may wanna check their heart and their kidneys. Because the ears, the heart, and kidneys all develop during the same first trimester.

- How interesting.

- So if there is an issue with one or any of 'em, they're gonna... They should check all three. And then from there, you'll be referred to the right helpful resources, including audiology and ENT. And most importantly, you know, find those organizations that offer what you need, that help that specific community. Because it can be very frightening. And families always worry. Mothers will always worry the most along with the fathers about their children. We just don't want anyone to hurt our beautiful children, pick on them or bully them. And at the same time, they have a lot of medical needs. And it can be very scary, but everything will be okay. It's normal to feel overwhelmed at first. It's normal to feel guilty, even though I hope they don't. And you just have to go through the time process of letting it all sink in. And finding someone else in the community in the same situation is priceless. It is amazing to find another parent with the same child. It's amazing. It's hard to have that same kind of conversation with a doctor no matter how wonderful and amazing they are and how knowledgeable. To have someone in that same boat is amazing. The first time I saw a little girl was when I was looking at preschools for Ally at one point. And I had already been having my events and everything. But this little girl came into the preschool classroom, bilateral microtia and atresia. She had her bone-anchored hearing device on. And she came up to me and said, "Hi, my name is Illy," signing at the same time. And she was all excited. And she said, "Today's my birthday." Dina, for me to see that little girl was what I needed. Even though, you know, I had been bringing people together, there are those moments where you have a conversation with someone and you run into someone at the grocery store or the swimming pool, and they're the same as you, and it's just truly amazing. And I will always remember that day.

- I love that story.

- Yeah, well that is how important it is to have community.

- Absolutely. I always say, there's power in the shared story and knowing you're not alone. And I think about that all the time 'cause I think it's so true.

- It is. Well, you realize your child's gonna be okay and you're gonna be okay. And maybe things aren't going to be as bad as you thought because it showed you hope. And hope goes a long way.

- Right, absolutely.

- Well, and also for the community for these new families too, it's to know that their children will grow up to be just fine. They're gonna be able to go on and do whatever they want in life. They can go to school or, you know, become a doctor, a teacher, a musician. It's gonna be okay. It's just, they can't see into the future. And that can be terrifying.

- So true. One of the things we do is support groups for parents. And sometimes, you'll have a parent with a 1-year-old and a 3-year-old and a 10-year-old and a 20-year-old. And the mom with the 3-year-old can't see into the future. But the mom with the 20-year-old can say, "It's gonna be okay. "Your child's gonna be okay." And that is such a comfort for those younger parents who just, they can't see it. You know, and it's understandable why they can't see it. But just to have that kind of support is priceless. Like you said, it's priceless.

- Well, and to have those communities, like I said, combined communities or blended communities where a lot overlaps, when you have older individuals to talk to where you can kind of see how they're doing, it's something that it's twofold. It helps that younger family, but at the same time, it gives that older individual the opportunity, whether they're a teenager or an adult, to be a role model, Dina. And that's where it starts, with people willing to share their experiences and meet with others or talk. And it's so important because, again, you cannot get this in a doctor's appointment.

- Exactly, exactly. So I have so many different questions to ask, but I think we need to wrap it up soon. But one of the things, because it is something that really bothers me, what are some of, you think, the misconceptions people have about people who have microtia and atresia and could be deaf or hard of hearing? And how can we work to dispel them if we can?

- Right, so there are labels in our world. Some can be good and helpful, and some can just have a negative tie to them. And the word disability can be devastating to someone because many people defy disabilities. In the microtia and atresia community, we always say, "We never let little ears or missing ears define us, "and the same with hearing loss." So as I mentioned, sadly, with the public, the public can be cruel. There's this whole idea of, you know, perfection and things on magazine covers and things that really aren't real oftentimes to begin with. But when you have someone who has microtia and atresia, A, they feel alone because they oftentimes will not see someone or find someone just like them. And so they feel different. And different can be a strong word too. It's all really about fitting in and self-acceptance. But, you know, with these individuals in our community, you really just have to find your path. And that takes time. You have to find a great circle of friends, someone who's there to support you. Many of our families offer a safe haven at home for them to go to. But, you know, they really need to just realize they're perfect just the way they are. And that can be hard to accept that. People on the outside may view individuals with microtia as, "Oh look, their ear's missing. "I wonder why." Or, "They have a crooked smile." Or, "What's that device on their head?" You know, like the hearing device. And a lot of these things can attract attention. It can raise questions, whether it's curiosity or, unfortunately, if you encounter someone rude. But it's something that you just have to, sadly, go through, hope for the best, and find your inner strength and how to respond, how to come up with a good explanation or response when these questions start being asked. So parents end up just kinda learning along the way. And then they end up coaching their children, "So this is just how I was born." And honestly, the bottom line is everyone has something going on, Dina. Nobody is symmetrically perfect. No one's perfect to begin with at all. But whatever challenge or difference you may have, it's even better if you can just own it. You know, embrace it and find your way of fitting in, whether it means covering your ear. We don't promote that. We want you to just be proud of yourself, wear your hair up, have that short haircut. But if you want a shaggy haircut to cover the part of your ear, whatever helps you get through that day at school to where you can find happiness, or if you want a surgical procedure done. All of this, if you wanna just accept yourself the way you are, it's all great. You just have to find your way and be strong. And then, like I said, going back to community, there are people you can lean on knowing that you're not alone.

- And it's taken me a lot of years to get to the point where I'm comfortable talking about it and sharing it. But I realize how important that is, and also to, to come to the realization that it's not all of me, it's just a piece of me, that I'm so much more than my hearing loss and my cleft lip or any of that. But I think it's important. And, again, that community helps that so much. I mean, I didn't have that community when I was a child. And to see what's happening now, it makes my heart sing. It make me so happy to know that this is out there.

- Well, times change. Yeah, times change. And thank God, like you said, today, there are more available resources. We have the internet. You know, there's so many more things. But, you know, everyone's different, Dina, even uniquely and individually. You're going to have individuals in both overlapping communities, no matter what their challenge is. Some have this amazing confidence about themselves. They're doing great. They may even pass on a lot of options that could help them live better quality lives, or they seem to be doing fine. And then there are others. I don't know if it's genetically predisposed, but they struggle. They struggle with accepting themselves, worrying, a lot of stress and anxiety, depression. And again, it goes back to that circle of friends. Who do you have? If you have nobody, unless you're that strong individual, it's gonna be different for each and every child and adult.

- And I always say, it takes one. All you need is one friend. If you just have that one friend in your life, one advocate, one supporter.

- Absolutely. If you don't mind, I wanted to share something just real quick. So a lot of people, you know, have asked me, like, you know, "How did this start, Melissa? "Like, how did you figure out how to like help "and reach out to this community?" And sometimes you realize, you know, maybe this is a calling or, you know, maybe someone was looking out for me. But I have lived in my neighborhood for 20 years, Dina. And here in Colorado, the very neighborhood that I live in falls within the best school district in the state that offers the best deaf and hard-of-hearing services.

- Wow.

- I had already been here well before Ally was born, never realizing that someday I'd have a child with hearing loss that would benefit. We actually have families that move in from other states to move into our neighborhood within the school district with deaf and hard-of-hearing children. And the crazy thing is, is in addition to that, at my daughter's elementary school, she at one point in time, there were 11 children in her very elementary school that had microtia and atresia. In fact, there were three children including my daughter in the same grade, three little girls all missing the same ear, wearing the same hearing device. And they all had each other. Now call that living in a crazy bubble. But most people, I've met many adults, 35, 45, 65, and they'll say, "I've never met someone like me." And to have lived here before all of this started with Ally. I've had people point this out to me where at the time I didn't even realize it. But yeah, looking back now, I realize I think someone was looking out for my child and this was meant to be.

- Yeah, I was just gonna say, because I say it about myself. Like maybe this is exactly where this journey has led me to exactly where I need to be, doing exactly what I'm doing. And if I didn't have the experience that I had when I was born and growing up, maybe I wouldn't be doing this. And I love, and I'm really passionate about what I do. And I feel like in talking to you, maybe this is exactly where you were meant to be. And, you know, you don't always wish these things on people, but you wouldn't be doing the work you're doing if not for the experience of having Ally. So this is my last question to you. What are your hopes and dreams for Ally, your daughter?

- So for Ally, Ally has some additional challenges in addition to her microtia and atresia and her craniofacial microsomia. She's got a little extra going on. My hopes and dreams for Ally are for her to live the happiest life possible. She, quite honestly, is the happiest little girl I know. And I hope that with what I do with Ear Community, that over the years she has seen that it's all okay. You know, there's a lot of people out there just like me. I don't ever want her to feel different or not like something about herself. And I hope that she will have this confidence. She has her moments of confidence. And, you know, I want for her to be able to fit into society. And I don't ever want her to feel or be discriminated against. And I just want her to have the best life that I can help her find. And so, through our organization together, she's the face of Ear Community as you are for myFace. And I just hope that she will always have that with her and always know who she is, and that it's okay.

- Well, with a mom like you, I have no doubt that she will have that in all that you're doing. So I thank you for that.

- Thank you.

- And I wanna, Melissa, thank you for sharing your journey with us. And you have accomplished so much advocating for your daughter and for others. And you hear, never underestimate the power of one. And this is so true. And I see how passionate you are and how tirelessly you work for the community you serve. So no doubt, you will continue to change the world for the better. So thank you.

- Aw, thank you, Dina. Thank you for all that you do as well.

- Thank you.

- Where would people be without organizations like ours?

- Mm-hmm, absolutely.

- Somebody has to start it somewhere, and it's amazing. I wished I had an Ear Community when Ally was born.

- I feel the same way. I wish I had a community like myFace when I was born. So yeah. But here we are, and always moving in the right direction. So thank you.

- Absolutely.

- Melissa is an inspiration to me and everyone she meets. Everyone has a story. And I'm hopeful that by sharing stories like these, we can create a kinder world. For more than 70 years, myFace has been dedicated to changing the faces and transforming the lives of children and adults with facial differences by providing access to holistic comprehensive care, education, resources, and support that pave the way for better outcomes. To learn more, please visit myface.org. If you would like to learn more about the myFace Support Groups so that you can connect with others in the craniofacial community, please visit myface.org/online-groups. Be sure to subscribe to "myFace, myStory" on your favorite podcast app and on YouTube to get notified of our next episode. If you'd like to receive email reminders of new episodes, sign up at myface.org/mystory. That's myface.org/mystory. Thank you for joining us for this episode of "myFace, myStory." Remember, it takes courage to share your story, so be brave and speak out.

- Hi, I'm Stephanie Paul, the Executive Director of myFace. MyFace is a nonprofit organization dedicated to changing the faces and transforming the lives of children and adults with facial differences. We do this through various programs and events such as the Transforming Lives Educational Webinar series, Races for Faces, the Wonder Project, and the groundbreaking myFace, myStory Conversational Series. You can learn more about all of these on our website at myface.org. If you enjoyed today's program, we hope you'll consider making a donation to help keep programs like this possible as well as to further the support of the craniofacial community. Thank you.

 

On this month's myFace, myStory podcast episode, host Dina Zuckerberg is joined by Austin Halls born with Moebius Syndrome.  He has incorporated his psychology degree, his journey, and his music to promote that you can love yourself and overcome any challenge that comes your way.  Austin will share his journey to the musician and now model that he is today.

 

- [Announcer] Welcome to My Face, My Story, Voices from the Craniofacial community, with your host, Dina Zuckerberg.

- Hello and welcome to My Face, My Story, Voices from the Craniofacial Community. Whether you're watching on YouTube or listening on Apple Podcasts, click subscribe now so you'll never miss a future episode. And if you're a fan of My Face, My Story, rate and review the program on Apple's podcast so we can get our message of inclusivity and empowerment to more people. I'm your host, Dana Zuckerberg, the Director of Family Programs at My Face. I was born with a cleft lip, a hearing loss, and no vision in my left eye. My face, My story is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. Today I will be joined by Austin Halls. Austin is a positive force changing how people view themselves and the world around them. Austin was born with a rare syndrome called Moebius syndrome making him born with facial paralysis. At the age of 25, he has been through four facial surgeries just to smile. The doctor said he would never be able to eat orally, and at the age of three, he has proven the doctors wrong. He has carried this attitude with every aspect of his life. Austin's strives to incorporate his degree in psychology, his story and his music to promote that you can love yourself and you can overcome any obstacle that comes your way. Austin has been a lover of fashion, style and art since he was young due to him not being able to show expression through his face. Being a professional recording artist, he has since released two albums and a powerful pop dance song called "Disabled" reclaiming the identity of being disabled. Welcome, Austin.

- Hello. I'm so happy to be here.

- Yes, I'm really looking forward to our conversation.

- Me too.

- Yes. So for those who may not know, can you tell us about your facial difference and how, well, you've talked about how many surgeries you've had, but tell us a little bit more about your facial difference and what it means.

- Yes. So Moebius syndrome is a super rare syndrome. The chances of getting this syndrome are two people out of a million. That's what I say, I'm two in a million. But with this syndrome, it is where the sixth and seventh cranial nerves are under developed. So I cannot move my face really at all. And I also cannot move my eyes laterally. So my face and my eyes are paralyzed. I also cannot blink. So I used to win all the staring contests in my school.

- Love that.

- But yeah, it's mostly facial paralysis. And just like any other disability, there's a spectrum and I'm very happy to have a more milder face. Some people have missing limbs, some people have tracheas. I had to have a feeding tube, like you said. So it just depends on the person. But facial paralysis is the biggest thing with Moebius syndrome.

- Okay. So just outta curiosity, when you sleep at night, are you able to close your eyes?

- So people have told me, because obviously I can't know myself, but my eyes close about like 90% of the way. So like, I think when I am, I can't really blink, so my eyes look super, super dry. I have eyedrops on me at all times. But when I am sleeping, people have confirmed I'm not sleeping with my eyes open and I'm happy because that sounds a little scary if I was just sleeping like this. So, yeah. So I think at night, it's closed like 90% of the time. I do wake up and I'm always like, my eyes are always burning, which is like just a classic case of Moebius.

- Right, right. So can you share with us your personal journey, what it was like for you growing up?

- I feel like my childhood was very, very, very normal. And I hate that word normal because everybody is normal, normal is literally just a made up word. But I feel like, the first three years of my life, I was in the hospital, it was back and forth. I was just really having a hard time adapting to, you know, this world. And after I got my feeding tube out and I kind of became, you know, stable in all medical issues, I kind of just lived the life that everyone else lived. I really didn't talk about my disability. It wasn't really in the forefront. I knew that I was different because I didn't see anyone with a facial difference. So I knew that I did have a disability, but I just lived, you know, my life knowing that I am just Austin. And I'm very happy that I grew up in a small school of 26th people, kindergarten through sixth grade. And it was just a really nice, like, they don't care about my syndrome. They just knew me. And my parents always pushed me to be vocal and to get myself out there. So I feel like a lot of the disability story is parents trying to protect them and almost coddle them where that could kind of limit their, you know, confidence, self-esteem. My parents were complete opposites and threw me out there and said, you're gonna go baby, and you're gonna talk to them and you're gonna do everything for yourself because as an adult, I'm not gonna be there to do everything for you.

- Yeah, I feel like in some ways my parents always led me to believe I could do anything I wanted. There were no real limitations to the differences that I had. So I can relate a little bit to that. I also went to a very small school as well, so. So how do you think your journey with Moebius syndrome has shaped the person you have become today and your outlook on life?

- I think that I would be a completely different person. There's like a dichotomy of, I was just talking about this, like, there's a dichotomy of like Austin with Moebius and then Austin without Moebius. And I really do believe like Austin with Moebius is a lot nicer, a lot kinder, a lot more empathetic. And I think we really do live a different path of the road that people don't even know is a thing. And I just think being, you know, being a different kind of minority group and going through this world with different experiences, you really learn what it's like to be on different sides of the field. I feel like, like I never want anyone to feel the way that I was growing up, especially if my bullying was, you know, a lot of it was a lot of like microaggression. It was a lot of staring, it was a lot of, you know, questioning my intelligence. And I know that's a huge thing in the facial difference community. We get just undermined in a lot of aspects of our life. So I feel like we have learned how to treat other people nicely, nicer and kinder and just be more empathetic for people. So I think Moebius has given me so many like just tools to be a better human being. And I think about like Austin without Moebius would just be a tornado and just going through life and just not even questioning anything. So I've gained so much like wisdom. I'm only 25, I'm gonna be 26 next a month and I tell people that I'm emotionally like 87 years old.

- Right, right. Yeah, I couldn't have said it better myself 'cause all the things you just said I think of like... I mean I think we are more empathetic, we are more aware, we are so much because of experiences of growing up with a craniofacial difference. And then at the same time it's just a part of who we are. There was so much more than a craniofacial difference.

- Do you feel that, I know this is your interview, but I would love to know how you feel about, you know, I think a lot of people on social media only see us talking about our identity of being disabled. And it's really funny because people comment and they're like, why are you only talking about your disability? And it's so funny. Do you feel like there's such a, I say dichotomy, said it twice, but like dichotomy of like normal life, you are not really talking about your disability but then your social life, you're only talking about your disability because it's so important.

- Right. Well, it's interesting for me, I grew up never talking about it when I was younger. And so it was only, it started maybe in my early twenties like you. And then it really, I think took off in the last 10 years, 10, 15 years, but really in the last 10 years when it came to my face. And then I started going into schools and speaking to kids, which you've done with me as well. And it's sort of opened up my world. And I found the more I shared my story, the more people could relate and especially within the community to say, wait. And then I realized, wait, I'm not the only one that felt that way. Like, I thought I was the only one that felt that way growing up. So it's been, and I don't think I would necessarily go back and change it. Like I feel like because of my experiences, it's made me the person I am today. And I wouldn't be doing the work that I do if not the experiences that I had. So I'm not sure I would change anything. Do I wish sometimes it could have been a little easier? For sure. But I think it's shaped the person I've become. And I have found the more I share my story, the more people even outside the community can sometimes relate to what I'm saying 'cause they have their own insecurities or they have their own experiences. And so yeah, it's been a journey.

- I think vulnerability is like the biggest thing. I think just like anyone with a disability, without a disability, like just being vulnerable. Like you said, sharing your story. Like people are, I think just trying to relate to anything nowadays. Like I feel like it's just hard to connect. Everyone's on their phone. You know, with the whole pandemic, I think just interactions socially are very limited. And people are afraid to talk to people that are new, which is crazy. But I think we're all just looking for something to connect with, and you sharing your story and telling people like, it's gonna be okay and this is what I've been through, like it builds so much like community in the disability community. But also too, I feel like my biggest and best friends are literally people that I am not building walls with. And I think we need to kind of let those walls down for people to come in.

- Right. Yeah. Which is for me has always been a little bit of a challenge is letting those walls down. But I find when I do, it allows for a whole different kind of relationship with actually feels pretty good when you do that. So I also think when you were just talking, I was thinking about how our stories are, I think in some ways so helpful for parents to see because when they have a three-year-old or a newborn, they can't even see the possibility of what their child can do. And so seeing our stories or hearing those stories, I think is so helpful for the families as well, not just for others.

- Yeah, my parents did not know if I was gonna be living a normal, I keep on saying normal, I hate the word normal, but socially normal life. And I think that really like, kind of scared them. My parents had no information about really Moebius at all, and it took two months to diagnose me after I was born. So I think the resources back then were not as amazing as they are now. Every day I'm calling my parents and telling them, like really cool things that's happening and they're just like, Austin, I literally never would've thought that you would even leave and go into college, let alone being a influencer and, you know, changing the world. And it's just, it's really, I'm very grateful. I'm very blessed.

- Very cool. So when did you first become interested in music?

- I have always been obsessed with music. And I feel like art has always been just something that I've drawn to just because I was not able to show expression in my face. And that raised a lot of questions for people, like, especially how I feel. Like I feel like I'm such a bubbly person, but I feel like people in high school would be like, oh, Austen's like so mad right now. And like, I would be like, no, like I literally just can't show anything on my face. Like people would say like, you should smile more. Like, I don't know why you're not smiling. And I feel like I had to kind of, kind of reroute how I express myself. And I tried to do that with music and I definitely feel like for me, when you hear a song, it is like undeniable. You don't have to question the emotions that are in the song. So I always related to music and I've been singing since I was like three years old. So I just, I've always been into music and I just think it's such a good way to express yourself.

- So tell us about your music. What kind of music is it?

- Well, I have changed my music for sure. I think as you grow as a human, I think your music has definitely changed. So I got into recording professionally at the age of 15, a baby with Moebius named Easton, their family is amazing. They live in Nashville. And they saw me posting covers and they knew that I just had an urge to become an artist. So they knew Gavin Degrass producer, he is a pop musician who's incredible. And they talked to the producer, they're like, please, we'll pay you. Like, we just really want him to like experience going to the studio for the first time. And the producer was like, no, I don't want any money. He sounds amazing. Like as long as he can go to Nashville, Tennessee, he's coming to my studio and he's gonna record. So I was 15 years old. They told me like, write some songs if you want, like, or if you wanna do covers, but get your butt to Nashville and let's record for like a week. So it was like a huge thing. It was still in high school figuring out like what kind of person I am. Like, I mean, who knows anything in 15. You know, like I thought I knew everything and I really did not know anything. So I wrote a really cheesy, like my first song that I ever wrote so, so cheesy. It was called "Take a Stand." And I was doing a lot of like social media and like advocacy and inspiring other people. Like, everyone was like, you're so inspiring. So I was like, well, I have to write an inspirational song because that's just what I am doing, right. So "Take A Stand," cheesy lyrics, very, very like, you know, like. Yeah, it was very cheesy. I don't know, I'm just also very critical. But it was an amazing experience. I recorded professionally for the first time. I walked to the studio and I was like, this is something that I wanna do for the rest of my life. So I came home and I started writing like actual songs. I started realizing that like, I don't have to just write about being inspirational. I can write about all different aspects of my life. So I was, you know, doing organic instruments, acoustic piano, and I listen to pop music and-

- I never heard it before. It's a great story. So speaking of disabled and lighting music, can you tell us about your song "Disabled" that you wrote?

- Yes, I cannot, like, I really think that this would be like such a stable, iconic song in my repertoire. And I think when you think about disabled pop songs, well actually I don't even think there is a disabled pop star, sorry, I don't think there is a disabled pop song. I think a lot of songs that are close to talking about like differences in disabled is just like very, like we are the world, like very like sad and like very like community. I don't know, I just think, I think it's a little cheesy. I think it's a little overdone and a little too on the nose. And it's just talking about like, we are together, which is great, I love the message, But I wanted to twist that a little bit and I wanted to reclaim the word disabled because there really is not any other term that talks about disabilities. There's no other umbrella term. So why are we kind of shying away from that term? I feel like any other minority group, they are celebrating their history. They're celebrating their identities, they're celebrating their terms. And the disability community is no different. So, you know, it definitely takes a while to come to terms with your identity and your terms. And I think there's a lot of negative connotation on being disabled in general. Unfortunately, you know, the terminology of disabled is not abled, but we don't have any other terms. And it's just unfortunate that we're shying away from our history and our culture. So I said, you know what I wanna do? I wanna flip the script. I wanna write a pop song being like, I am disabled. So what? I am disabled. And I'm gonna own it. And it's just, I've never heard a kind of dance song reclaiming that identity. And it happened very quickly. I had the idea and I was in the studio that week and we got it done in like a week. So I just didn't even think about it. I was like, this is happening. This is iconic. And it's one of my most streamed songs, which is like really, really cool.

- That's great. So most people probably don't even notice. So what made you decide to pursue modeling?

- Oh, yes. So modeling is something that I didn't think I was gonna do. I really enjoy taking pictures. I'm really into photography and you know, I love sharing myself on social media just to be authentic and share my kinda world with the other people and kinda share that light for others to feel inspired. And I have also been really a lover of fashion because just like I said about my facial paralysis, I needed ways to express myself. And I know if I dress how I wanna dress, people can kind of get a glimpse of how my personality without trying to explain it to them. So I just started posting like, you know, my outfit pictures and style inspiration and I just got the opportunity kind of sent to me and they were like, you should be a model. You should sign up, you should apply. This is a huge deal. Zebedee is one of the biggest disabled talent agencies. It's a huge London, UK based thing. It's also in LA in New York City. So it's crazy. I never thought that I would be doing something so different from what I wanted to be doing. And I think that's just life is just being open to anything. But yeah, it's really, really, to say that I'm like a assigned model is like insane. .

- So what does representation mean to you?

- Oh, representation means that we are seeing everyone. I know that is representation, but I just know that like, especially in the disabled community, I never had anyone looking, I couldn't look up to anyone. I didn't see anyone like me in social media, especially being gay and disabled. It's just a lot of layers of diversity and I never saw myself like on movies and media. I didn't know like if that was like something that could be accepted, you know? So I'm just so happy that we're finally seeing people with facial differences not painted as villains because that is literally the only thing that I would see on movies and media. Why are we painted as villains? Anyway, that's another story. I'm happy that we're finally seeing also like the multidimensional aspect of disabilities. Like we are not just, you know, one thing and there's so many types of disabilities that need to be seen. And I'm happy that the social media aspect is showing just more than one type of disability. I think they try to, oh, well we have someone in a wheelchair, so we really checked the mark with that one. I'm like, you really didn't and there's so much more that we need to do. So I think we have a long way to go, to be honest. I think we're just starting on the right foot, but we have so much more to do.

- I agree. I feel like we're making a little headway. And also the thing is, I feel like having a craniofacial difference was never really a part of the conversation or part of the, you know, you talked about being in a wheelchair, being on the spectrum, but having a craniofacial difference is, or a facial difference has never been a part of the conversation and part of media representation and all of that. So I feel like it's just beginning to happen and this opportunity that you have to be out there being a model and others in the facial difference community, I think is huge. It's a huge step in the right direction.

- I never would've thought that I would be changing people's lives. Like, I feel like you just grow up and you're like just trying to survive and sit and you are trying to find that puzzle piece of like, where I fit in in this world. And like the fact that we're changing the game of like, you can be successful. Just seeing people that are successful and proud, and I think, I love to talk about the dichotomy. I've been really saying dichotomy this episode. I love it, I guess. But the dichotomy of disabled and confidence. I think we've never seen that in the media. We've only seen people like, you know, being inspirational for doing literally things that normal people can do. Don't celebrate disabled people for going to school or going to college. Like that's a normal thing. It does take strength, it does take courage, but applaud me for being vulnerable. Applaud me for going out and above and talking to people about my weaknesses or how differences are better because of it. So I really am so grateful that I can just be a light for other people and just do what I love to do 'cause I know you and I both have very much the same passion. This is not work to us for sure. Like, we love doing what we do and it's crazy that... And do that and also inspire other people.

- Right. A hundred percent. And I think about that all the time, how much I like this life that I'm in now. Because, like I said, I spent so much of my childhood trying to hide it and looking away and wanting so badly to fit in and realizing that this is just feels so much better and showing vulnerability, which I said is not so easy for me, but it's just amazing when it happens. And even our conversation right now is just, I'm so enjoying it. So to our audience, I hope you that you're enjoying this episode of My Face, My Story. Whether it's your first time joining us or you've been with us since the beginning, making sure you're subscribed to our YouTube and Apple podcast channel and sign up for our mailing list at myface.org/mystory. So how do you balance advocating for awareness and acceptance of craniofacial differences while pursuing your career in modeling? Because I feel like it's, you're trying to, you're doing it all, which is amazing.

- I am very tired. I tried to also do what I love to do. I wish that I had one basket with like one thing and I only did that one thing. But I am very grateful and blessed to have so many different baskets. And I just have been hosting with the world and like whatever. I just know that the universe has me. I have, you know, I'm just ready to go on my journey and not worry about anything and know that the universe will allow me to kind of enjoy the things. I think there is a balance of like doing what you love and also advocating. But everything, I feel like everything I do is like fun and everything I do is not really work to me. Like becoming a social media influencer, like I'm really manifesting that to be my full time. So like, I don't have to work a job that I don't wanna do because I come on here and like, even though it's very early in the morning, I'm just so happy to have the platform. And I think about like, even when I have my days where I'm like, because I'm in Aries and I'm always like trying to do the next thing and I can't just sit for a minute as I'm always just wanting to do something more. But when I have those days that I'm not feeling like I am doing enough, I have to kind of reflect and sit back and realize that like people would kill to have the opportunities and the platforms that I have, and I really am trying to be more grateful about everything, but just especially realize that like, this is not the normal disability story. You know, there's people who don't even feel comfortable going on camera. So I have to really be mindful and appreciative and grateful that we are able to share our stories because some people can't do that.

- Yeah, I do feel like when you do what you love, it doesn't feel like work. And then I also can relate to feeling, the times when I feel like I'm not doing enough, I need to do more. I wanna do this, I wanna do that. And then slowing down and realizing, okay, that will happen when it's time, when the moment's right. So I can relate to that.

- I'm very into spirituality. Like I really feel like the universe, you know, it doesn't matter what you believe in, but what is right for you will come to you. And like, everything is supposed to happen the way it's supposed to happen. So trying to lose control of everything is like, and just kind of get your hands off of it and just let it happen, like that's even the biggest thing that I, because I wanna do everything all at once now and that is not possible. So I've just been letting-

- So as someone who has become a role model for others with craniofacial differences, what messages do you hope to convey to those maybe facing similar challenges in their lives?

- I hope to inspire them to just be authentic and to be more vulnerable. I feel like I've received the most amazing people, opportunities and connections when I was not thinking about how people were perceiving me and just being and living in the now. I also have my degree in psychology, so I'm really keen on your thoughts and your feelings about yourself. So I really hope that people can get outta their heads because we're so... I live in this head too and I know that like, it can stop you or it can propel you to greatness. And I think that we need to just stop worrying about what other people think and stop worrying in general and just be. So, I would say just inspiring others to live their authentic lives, to be unapologetically themselves, to take up spaces in rooms that they don't feel comfortable in. And to go to tables that they have never been invited to and sit down and not apologize for anything.

- Right. So, great advice. So why is finding and being part of a community like My Face so important to you?

- I love My Face so much because I did not realize that there is a facial difference community out there. And I felt like even though I lived right by New York City, there was just not a lot of community that was here. I'm a part of the Moebius Syndrome Foundation. I'm on the board and I love visiting the conferences and helping with the conferences, but they're every two years. So I would have to wait, you know, two years for the best weekend of my life. And I just wanted more community. I wanted to feel more connected with people with facial differences. And I did not realize that there is a social difference community in New York City. And I just found it a couple years ago when I needed it the most. And I've met just like amazing people from My Face. And it just is like really powerful to know that like, you have your friends, you have your high school friends, you have your normal day-to-day life friends, but like, that's a family, that's a support system, that's a community that like, is so like unconditionally loving and like knowing that when you are alone, like you can hit up anyone in that community and there's like such a immense amount of love. So I think just knowing that like you have people that love you and support you and understand truly what it feels like is just, it's really, it's powerful.

- Yeah, I agree. So looking ahead, what are your goals and aspirations for the future, both personally and professionally?

- Oh gosh, I hate looking into the future. I like, I really try to live in the now and I will have a mental breakdown if I try to plan out things because life is gonna throw some curve balls at you.

- I love that.

- What I would like, I'm gonna like manifest what I would like put out an album in July, which is so fun. It's like very much about like disability, joy and loving yourself. Lots of modeling gigs. I would love to work with a huge, like fashion brands, like a huge men's fashion brands, to get over, you know, 100K followers hopefully on TikTok. We're almost at 25K. And just really cool opportunities of like speaking and sharing my voice and whatever that means, you know, in that moment.

- Love that. So knowing what you know now, what's one thing that you would tell your younger self?

- Oh, that's a hard one.

- I know. I like it though. I always think about it.

- That's a great question. I would tell myself that everything's okay. Literally calm down, sit down, take a minute and take some breaths. Like, literally life is not that deep. We are on a floating rock in space and literally nothing matters. And what you really think is like, people are gonna see me and they're gonna judge me, you're not gonna see that person probably ever again. So stare back at them, be unapologetic. And I am choosing to live the life that I want to live. So just do what you wanna do. Like do what makes you happy and not care what people say. And just know that like, yeah, you're gonna see future Austin in a couple years, like killing it. And that the trials and tribulations that you go through, like are so meant to be and it's only gonna make you stronger for sure.

- So what are the three words you think of when you look in the mirror today about you?

- Ooh, powerful, energetic, and eclectic.

- Love it. So Austin, last question. Where can people find you or follow you on social media and where can they find your music? I think you have a new website, right?

- I do. I do have a new website. You can follow me on TikTok @AustinHalls, just Austin Halls. On Instagram, by bio name is in the title, TheAustinHalls. Spotify, iTunes on all music platforms @Austin Halls. Just type in my name and yeah.

- Great. So Austin, thank you so much for sharing your journey with us, your story. You have accomplished so much in just 25 years, way more than I did when I was that age. And you do so much to advocate for yourself and for others. And I can't wait to see what the future holds for you, even though we are not looking into the future yet. And no doubt you're going to do so much to help change the world for the better. So thank you.

- Thank you. And thank you for letting me share my story on this amazing platform.

- Okay, thank you. Austin is an inspiration to me and everyone he meets. Everyone has a story. And I'm hopeful that by sharing stories like his, we can create a kinder world. For more than 70 years, My Face has been dedicated to changing the faces and transforming the lives of children and adults with facial differences by providing access to holistic comprehensive care, education resources, and support that paved the way for better outcomes. To learn more, please visit myface.org. If you would like to learn more about the My Face Support groups so that you can connect with others in the craniofacial community, please visit myface.org/online-groups. Be sure to subscribe to My Face, My Story on your favorite podcast app and on YouTube to get notified of our next episode. If you'd like to receive email reminders of new episodes, sign up at myface.org/mystory. That's myface.org/mystory. Thank you for joining us for this episode of My Face, My Story. Remember, it takes courage to share your story, so be brave and speak out.

- Hi, I'm Stephanie Paul, the Executive Director of My Face. My Face is a nonprofit organization dedicated to changing the faces and transforming the lives of children and adults with facial differences. We do this through various programs and events such as the Transforming Lives Educational Webinar Series, Races for Faces, The Wonder Project, and the groundbreaking My Face, My Story conversational series. You can learn more about all of these on our website at myface.org. If you enjoyed today's program, we hope you'll consider making a donation to help keep programs like this possible, as well as to further the support of the craniofacial community. Thank you.