Rachel Byrne:
Hi, everybody. Happy Wednesday. I am really excited to have all of you joining us today. We have the most incredible colleague and also advocate in the cerebral palsy space, Xian Horn, joining us today for our Instagram Live. And I am just going to connect her in now. And I am just so excited for this conversation because she is just one of the most [inaudible 00:00:30] people that I am fortunate enough to work with. And I can't wait to be able to share obviously her joy and everything else with everyone else. And here she is here.
Xian Horn:
Hi.
Rachel Byrne:
Hi.
Xian Horn:
How are you?
Rachel Byrne:
I'm wonderful. How are you?
Xian Horn:
Good. Can you hear me?
Rachel Byrne:
I can, but you're sideways.
Xian Horn:
Okay. So are you. Okay.
Rachel Byrne:
Oh, how's that?
Xian Horn:
See? I'm just trying to find a place. Okay. But then I'm halfway. Okay. We're going to, I might have to hold it. Okay. So sideways doesn't work.
Rachel Byrne:
Or I didn't know if I go sideways. Does that mean we're both. I don't know.
Xian Horn:
No, I think, okay. I'm just going to hold it. It's just not going to... Okay. I'm just going to hold it.
Rachel Byrne:
Yeah, I think it doesn't work. I think then we're just both sideways. However, I am so excited for you to join us and you know, let's have a wonderful chat today and oh my gosh. You've got a fan club already happening.
Xian Horn:
Yes. Oh my gosh. Well, thanks to you guys.
Rachel Byrne:
Xian is wonderful. So we're very excited.
Xian Horn:
I want to see... Yeah. Okay. I want to say I see Laura just joined us. Thank you. And yeah, I'm so excited to do this. We've talked about this for a while.
Rachel Byrne:
As always, please, everyone puts comments or questions in the comment section and we are going to get to them as we go through. I've got some definite things that I want to talk to you about and hear your thoughts on different things that have been happening. But for those of you that don't know, Xian is a teacher, a speaker, a beauty advocate, a woman with cerebral palsy. But as I said, wonderful colleague, and yes, she is an inspirational, amazing person, 100%. So can you just give people a little bit of a background on how... Your background, like where it's coming from? Obviously you are a contributor, you are a writer for Forbes. You're an incredible speaker, but yeah. Can you get a little bit background to those that don't know you.
Xian Horn:
A phone call as this is coming in. This is very professional.
Rachel Byrne:
Oh.
Xian Horn:
Okay. So I was born with cerebral palsy and diagnosed at a year old. Had no plans to advocate. Thought the best thing I could do was just live my life as happily as possible and let that be an example and that would be enough. I lived in a bubble really where I was an only child and basically I think they really created a space for me to just be myself and be free and authentic. And being the daughter of artists I think was really helpful because they're all about uniqueness and freedom of expression and things like that. And talking about stereotypes for a second, they weren't the typical Asian or Jewish parents in the sense that my dad spent his academic career swimming instead of going to class. And my mom was an artist who really didn't care for school much otherwise. So they just allowed me to be and be free.
Xian Horn:
And so I had no plans to advocate, but what ended up happening is that as I moved on in life, I went to college and that was transformative. Everyone there wanted to change the world in some way. And that was quite intimidating, I've got to tell you, because there were 18 year olds there with two nonprofits already and I thought oh my gosh. And I think, because I was told when I was younger, oh, you should advocate or you should be a poster child for this or that. I didn't want to do it because someone else wanted me to do it. Do you know what I mean?
Rachel Byrne:
Absolutely.
Xian Horn:
And so there was a bit of rebellion, I think, against that idea for a while. But then when I graduated college and I was actually doing my second job where I worked for a theater called Visible Theater, I was so inspired by the company I was keeping. There were 45 members total, 15 with disabilities, and these were actor studio, actors, Kennedy Center, award winning playwrights. And then when we would talk about and I would actually sit in on these writing sessions that they would do. And it was very diary like, and the things that people were writing both with and without disabilities, these are my role models. And they were really hard on themselves.
Xian Horn:
And I thought, wow, if this is how my role models are doing, how's everyone else doing? And specifically around disability. It really, I know this sounds crazy looking back, it shocked me that people with disabilities would have difficulty with identity or body image, just because I had plenty of insecurities as a girl becoming a woman. But I would say, I don't know how this happened exactly. But the one area of my life that was sort of ironclad, that you couldn't touch, that belonged to me, was having cerebral palsy.
Rachel Byrne:
Yeah.
Xian Horn:
And so I realized what a gift that is. And obviously that isn't the norm, but it was a wake up call in this moment. And so I wanted to have positive dialogue around... At first, I wanted to support my friends and let them know how beautiful they are and how I saw them, but also having positive dialogue specifically around disability and just realizing that we all have something to contribute. Even for myself realizing, Rachel, that the beauty in you does not take away from the beauty in me and vice versa.
Rachel Byrne:
Absolutely.
Xian Horn:
Right. We all have something. You can look at the person next to you and say, well, I don't have that car, I don't have that life, but that doesn't mean you can't have what's perfect for you. You know what I mean?
Rachel Byrne:
Yeah. Definitely. And for people who are listening, you actually transformed my thinking and I'll just tell a little bit, sorry. The first time I met Xian, I met Xian as part of our design for disability program that we were doing. And I was presenting to a group of young designers and I was presenting sort of more statistic type things. And you came up to me and you said afterwards, you were like, "Rachel, those statistics are fine. They're great. But that's not how I feel."
Rachel Byrne:
And it just made me think. I'm like, okay, my background was in research. My background is in numbers and I'm like, well, I missed the point. It is all about how you feel. There's such this time where you can do numbers and you can say all these different things, but at the end of the day, if you're not responding to people's feelings and thoughts and going that step deeper, what are you achieving? And it definitely resonated with me and I remember that conversation so clearly. It was at FIT and it really has transformed the way that I think.
Xian Horn:
Oh my gosh. That means so much to me. But also I think that if there's anything I learned, especially if we're going to shatter stereotypes, I really try to treat everybody as the individual in front of me. Try to put all my preconceived notions about who I am, who they are, off the table, so that I can really receive the person in front of me. And I found when I do have these preconceived notions, often I'll be completely thrown for a loop. And so I think that's a really interesting thing. I think the numbers are really important. Don't get me wrong. But I do think that sometimes we can look, statistics can dehumanize.
Rachel Byrne:
Yeah. No, definitely. And I think that's sort of something, when we are telling stories, when we're telling narratives, and this is something that you do so wonderfully. And so for anybody that hasn't read any of Xian's blog, go onto Forbes and have a look at some of the things that she writes about, because the way that you write it, yes, the numbers matter and they come in, but you create the narrative around it as to why the numbers matter. Because at the end of the day, I can say one in 1200 people have cerebral palsy or three per thousand have cerebral palsy, but what does that mean? And this is where I think you write so beautifully to explain this to people.
Xian Horn:
Thank you so much. I mean, I also think I have never come at something, coming at it as an Asian woman or a person with a disability only. I think it's really important. I think the key and what's expanded my life is I'm really a humanist first. So I really have only lived my life and write according to what I think the most people will benefit from. So I really just ask myself, will this help humanity? If the answer's yes and I'm available, I try to do it. That's it.
Rachel Byrne:
So I think that like segues really nice into some of the things that you really talk a lot about, which is sort of beauty, which is sort of finding your beauty and inner beauty. Is that really the right word? Because I think it's really the whole being that's beautiful. Can you just sort of explain a little bit about your philosophy around that sort of stuff?
Xian Horn:
Oh, well, I realized that the kind of beauty that I'm talking about, of course, I think when you've done the inner work, it's important to express it outward. And it's fun to do that. Thank you for giving me an excuse to wear a jumpsuit today. And actually my mom put some makeup on me. This is the most fun [crosstalk 00:10:02] all month.
Rachel Byrne:
Yeah, no, I think in this time it like makes us feel good, right. Like it does. It makes you sort of feel like, okay, I'm going to look wonderful today. And you always look wonderful.
Xian Horn:
It's like self care right now. It feels like.
Rachel Byrne:
Yeah. Totally.
Xian Horn:
But I think I realize that the thing I'm really advocating for is sort of the spirit of beauty. How do we feel? How do we make others feel? How can we share? How can we know ourselves better so that we have more to give? You know what I mean? Because if we are in the business of healing ourselves, it's really hard to give. And I'm not talking about healing cerebral palsy. I want to make that very clear.
Rachel Byrne:
Yes.
Xian Horn:
I mean, just... It's interesting. I had a friend say to me, everybody's come into quarantine and obviously some are out of quarantine now, but come into quarantine with their own baggage. And so I think every human, we have things to work through, and that was sort of the basis for the self-esteem classes that I ended up teaching at NYU and other places was really the first thing we do is kind of address what's hurt us.
Rachel Byrne:
Yeah.
Xian Horn:
Whether that's culturally or within our, maybe something our parents said to us that they didn't even know was hurtful. What has hurt us and what is holding us back from fully and totally embracing the fullness of who we are and what we have to give and to contribute in the world? That doesn't necessarily mean a job, but it could.
Rachel Byrne:
Yeah.
Xian Horn:
But you know, if you love to sing, what's holding you back from singing more? If you love to write, why aren't you writing more? That was a big one for me. That's part of why it's amazing too, that I blog it all because the younger me, I made words so much, I loved words so much that I almost held them so precious that I never wrote. I was a perfectionist to a fault. And it was really, it was a constraint.
Rachel Byrne:
Yep.
Xian Horn:
And I think there was something to just say, whatever I put out there will be good enough. You know-
Rachel Byrne:
And what was that tipping point for you? When did you get to that stage where you were just like, okay. Because we have a lot of sort of young followers who are in college where it's like, okay, this is great advice, but how do I make it happen? How do I action this? Or did you have a wonderful mentor that helped you through the process? Or did you do a program or what were your steps?
Xian Horn:
Well, I think it started with the visible theater people that I mentioned, because about six months into grant writing for them, they came to me and said, hey, by the way, would you like to write a monologue and be in our next show? And I said, I've never done this before. And they said, well, not everyone will make it to the end. And it's a year long writing process and you write once a month. And I figured I've never performed, but at least if I do this, I'll know that I'll be writing something once a month. Right? So having people that I respected hold me accountable and having something to kind of look forward to or kind of an imposed deadline, was really helpful because it's really easy to put it off, especially when it's your life.
Xian Horn:
And for me, I think I've always known that I had something to share. And I think what also helped me was performing in that show. I couldn't even hear my own voice the first time I performed. And it was for NYU's Initiative for Women with Disabilities. And by the way, there were a couple girls I already saw signed on. So, hey ladies. But when I performed in that show, I couldn't even hear my own voice. And five women afterwards came up to me and said, I really related to your story. Thank you so much for sharing.
Xian Horn:
And that's the first time I realized that my story wasn't for me. Whenever we hear a story, we're always putting ourselves into it and maybe [inaudible 00:14:08] America. So I think that's what propelled me, even if I didn't feel ready to just be like okay, I have to get ready. I have to do it even if I'm not ready, because there are people who may benefit from what I have to say.
Rachel Byrne:
That's so phenomenal to put yourself in such a vulnerable position. And I think this is something that we all hopefully are doing a little bit of right now, right. We're we are having to do this self-reflection on ourselves because of the world and the environment and everything that's happening and becoming more vulnerable and knowing that being vulnerable's okay. And create that support network around you to succeed through your vulnerabilities.
Xian Horn:
Definitely. And actually we connect more on vulnerability than strength.
Rachel Byrne:
Yeah.
Xian Horn:
So if somebody comes to you and says everything in my life is perfect, isn't that wonderful? You'd be like, oh, hi.
Rachel Byrne:
Yeah. Like...
Xian Horn:
Who the heck are you? But if somebody says, like someone just told me right now, they lost their grandfather last week. Well, I lost all of my grandparents by the time, about 10 years ago. And so I was able to say, wow, I can... You know what I mean? I've been there. And we may not have the exact same experiences, but I think that we really do connect on the things that are not easy, more than anything else. And I think that's why, especially at the beginning of quarantine, I think in some ways we were all going through a lot and having things to overcome, but there was a sense that everybody was doing pretty much the same thing. We were all in the same boat for especially these first two months of quarantine.
Rachel Byrne:
Exactly.
Xian Horn:
So anyway.
Rachel Byrne:
And like-
Xian Horn:
A lot to say.
Rachel Byrne:
Do you have any things that you do each day? Because honestly you bring so much joy to so many people's lives and-
Xian Horn:
[crosstalk 00:16:11].
Rachel Byrne:
... you really, this level of positivity. No, you do. And it's wonderful to... It's contagious. So really when you come into a room, it is contagious for everybody else there to be like, okay, wow, let's do this. You are so motivating to be like, all right, any project that I've worked with you on happens and we get it done. And I don't know how, but we get it done with smiles on our faces and it feels fun. It can [crosstalk 00:16:36] people some things like, do you do anything each day to help with those different things?
Xian Horn:
Well, I think, people ask where does... I remember being in college and going through a breakup and saying to somebody that I realized it took me six months to realize that I was depressed.
Rachel Byrne:
Yeah.
Xian Horn:
And I told a friend and they were like, but Xian, you're always smiling. You're the happiest person I know. And that was a moment where, and I think this is why the self-esteem work is so important, that was a moment where I realized that the outside and the inside didn't match.
Rachel Byrne:
Yeah.
Xian Horn:
But I am happy to report that, yes, there are things you can do. And as I've grown into this work and also wanting to talk the walk, so to speak, or the role or the ski in my case, the ski poles.
Rachel Byrne:
Yeah.
Xian Horn:
I think I realize that really the source of all joy is gratitude. You have to start with being grateful for what you have and then you can build upon that. I'm grateful to have time to speak to you, Rachel, or I'm grateful to have a safe place to be right now, whatever it is. And it doesn't have to be for big things. And I think also, I just love what I do. I genuinely do. So it makes it easy. I don't have to go into it like, okay, I got to psych myself to... You know what I mean?
Rachel Byrne:
Yeah. No, absolutely.
Xian Horn:
I think that's why I would encourage people to go in the direction of things they love.
Rachel Byrne:
I was just about to say exactly the same thing. Hearing your story and saying, I wasn't sure that I wanted to do advocacy work. I wasn't sure if this is where I wanted to go. But finding that you loved that and finding that brought so much into your life. I think it's why I do my job. I love my job. I absolutely love working with the people that I work with and executing the programs that we do at the Foundation. And if I didn't do that, if I didn't like it, I just don't know that I want to be here.
Xian Horn:
Right. And also, I think it's also following the need. When I realized there was a need for advocacy or a need for my story or other stories. That's what motivated me to get other girls talking and sharing, whether it was in my NYU classes or if I do a Q&A somewhere. Are we going to do Q&A with this group, by the way?
Rachel Byrne:
Yes, I hope so.
Xian Horn:
Oh, okay. We're about to practice. I've a couple, I want one more question to ask you though.
Rachel Byrne:
Sure. Okay.
Xian Horn:
Because it's around advocacy work and it's around some of the issues that you really feel still need a lot of work. Right? Because I think all of us as community, allies, individuals with cerebral palsy, other disabilities, we have to come together because there are, this goes back to my numbers, there are some things that need to happen within the disability community when it comes to funding, when it comes to change, when it comes to all these different things. What are some of your key things that you've sort of been working on and pushing on over the last six months?
Xian Horn:
Well, right before all of this Coronavirus, this big thing that arrived in 2020, transportation was the biggest thing for me because I believe that's a big factor in why employment numbers are so low, is access to equitable, same day travel, which is guaranteed for every other New Yorker, for example, where I am in New York. But I just really felt that this is really a civil rights issue. It's more than just, can you get from A to B, but if everyone else has the ability to travel same day, I absolutely believe that it is a matter of human rights for us to do the same.
Rachel Byrne:
We've just got a question and I couldn't agree with you more. The transportation issue in New York. We've spoken about it a lot. It's almost frustrating that we have to talk about it and we are having these conversations about it because you would hope that this wouldn't be an issue in 2020, but we've just got a question from someone. I want to start advocating and share my story; how can I start? And I know even just thinking about your transportation stuff with advocacy. There were so many elements that you had to work on there. You wrote a story. There was a petition to sign. I know that you are going to local level government. I know you were doing all these things behind the scenes as well. If someone wants to start, where can they start?
Xian Horn:
Well, first I think it doesn't even, I mean, first I think it's important, even if you grab your little brother or sister and start talking to them. It doesn't have to be, I think people think, oh, if I tell my story, it's got to be on a Ted stage or it's got to be like on NBC news or... I think it's really important to start small, even with writing. One thing I've started doing is just writing a hundred words a day. So maybe that means... Or just having a conversation with somebody who's looking for advice from you. It doesn't have to be this big thing. I mean, I kind of feel like advocacy found me, but it followed when I started telling my story. And when we performed, it was a theater. I mean, maybe 40 people per performance were present in the room.
Rachel Byrne:
And I will say to everyone here as well, one thing, and this is because you have done this in my presence so many times and make me now do it in a great way, is that no matter where we are or who you are talking to, you are always open to starting that conversation and being able to tell your story to the people that need to hear it. No, because you are right. It's one of those things to be like, okay, people don't want to hear my story. It's not interesting to them or they're so busy, they've got other things going on, but in a matter of fact, most people do want to engage in these conversations.
Xian Horn:
Yeah.
Rachel Byrne:
And so it is. It's about telling that story to who will listen.
Xian Horn:
We learn so much from each other. I mean, and I didn't even know the story you just told me about, I definitely, I mean, I took you aside because that's how I... But then I remember feeling like, oh, should I have said that? Maybe that I just met this person. And so for your openness to that, I really appreciate it. But I think, going back to what you were saying, I think when we live with ourselves 24 hours a day, and especially when we've been isolated for this long, it's so easy to just be like, oh, I'm boring. Nobody wants to hear that. You know what I mean? Because when we live with ourselves, we know the best of ourselves, the worst of ourselves, we know what we're thinking all the time. You know what I mean?
Xian Horn:
We know ourselves when we have bad breath, our hair's a mess, whatever it is. And so it's really easy to judge that and underplay the role and the value that our voice has.
Rachel Byrne:
Yeah.
Xian Horn:
And so I think it's really important to first realize that you don't have to have a harrowing dramatic story for it to be powerful. You don't have to... And I also think that there's almost like this thing of like, oh, well. And I used to have this when I was younger. I remember being on a panel with a girl who she actually survived a coma three times. And I was like, well, what am I doing, telling my story next to this woman who's literally seen death and come back?
Rachel Byrne:
Yeah.
Xian Horn:
I remember being intimidated in that moment. And I think what I've learned is it's not, first of all, it's not a competition. That's really important. My mom always said to me, there's always going to be somebody taller than, you prettier than you, smarter than you and it's okay. Just be you. And it was a real gift to me. But I think when I was younger, I would see all this beauty and all this purpose in other people's lives. And then instead of it inspiring me to do more, it would just make me say, okay, I'm just going to be in this corner and let them be great. And what I've learned is that we all have greatness within us. We just have to fan the flames so that it can burn brighter.
Rachel Byrne:
And for anyone wanting to reach out to sort of do these things, please reach out to our page, reach out to your page. Talk to us. Go into our DMs. We are more than happy [crosstalk 00:25:24]
Xian Horn:
The other thing too, is even asking that question, to the person who put that question out there, that's the first step. Right? And if you don't feel comfortable telling your story right away, well then talk to a mentor, DM me, DM Rachel. Talk to somebody, because that's the beginning. You're already starting your journey just by asking that question. And if you're asking that question, it means there's a desire there that needs to be explored. So I think you're already on that path. So thank you for the question. And are there any others?
Rachel Byrne:
Hang on. Let me... Okay. So this is a really good question as well. The first one is I want my three year old daughter with CP to be proud and confident. What can I do to promote this? And I love this because you know, as I'm a mom of a young daughter and two young sons. And it is like, there's this responsibility as parents to be, we want them to be wonderful and instill in them everything. What is, and your parents have been really wonderful and I've met your mum. I've never met your dad, but I've met your mum. She's just, I love her bits. But what are some of those things that really resonated with you growing up that maybe advice that you could give to some young families?
Xian Horn:
Well, because that was actually the first motivation. When I wanted to do this work, I started to ask myself, because when I was in this room full of these incredible actor, studio actors, Kennedy Center, award-winning playwrights writing in their journals, all of this sort of self-loathing and questioning disability identity. And when I really went inward and said, why is it that I never had some of these issues or these questions. And the reason really was because my parents created an environment of so much love and support that I really felt I could do no wrong. And my grandmother was almost delusional. She'd say things like, oh, you're the most beautiful girl in the whole world. You know what I mean? So when you have that kind of unconditional scenario, it really creates almost like a, it's like you're dancing in a padded room. You know what I mean?
Rachel Byrne:
But I think your parents still would've let you fail in a safe environment, right?
Xian Horn:
Oh, sure. And in fact, perfect example, because my dad was talking about it the other day is the fact that when I transitioned from walker to pole, right, my dad knew he wanted to go on a ski trip with my mom and me. And he just had this idea. He took the walker that we were about to retire to this ski shop and asked the guy, can you put skis on this thing? And they just took turns pushing me up and down the slopes. And I fell all over the place. But within a controlled environment. Obviously I didn't get hurt. But I said, well, how did I react? I remember screaming from joy. I just enjoyed myself. And it didn't even matter if I was good at it. I was just doing it. So I think creating an environment where you trust your child to try new things, creating an environment where, I mean, because I believe that you, as a parent, the parent has so much more power than they realize. And the thing is as parents... I say that as if I'm a parent.
Rachel Byrne:
Yeah.
Xian Horn:
But I think parents don't realize that your fears, your anxieties, your hopes, your dreams for your child transfer. Kids know. They can tell. I knew that my parents believed in me. And that was all I needed at the beginning to start my life in a positive direction. So I think to realize, don't worry, I would say, we're talking about stereotypes here. Don't worry about what you think the world thinks of your child. Don't worry about what others are saying your child is capable of. You know your child. And if you can kind of continue to, what's the word, fertilize or water your child, like a plant with love. And I don't know.
Rachel Byrne:
No. Yeah. No. I think you're hitting such an important point there, is the fact that it's creating an environment that is safe, that allows success. That allows for people to learn from mistakes and failure. I don't really like the word failure, but you're learning from those different things.
Xian Horn:
[crosstalk 00:30:08] You haven't failed.
Rachel Byrne:
Yeah, exactly. And I think being able to put your child in an environment where they can succeed, where they have the opportunity to do the things that they love to do. Going back to your main point, find things that your child enjoys to do. As you said, we've got all these preconceived ideas of what we might want our child to do, but what do they love to do? Because no matter what...
Xian Horn:
Follow their [crosstalk 00:30:36]-
Rachel Byrne:
Absolutely.
Xian Horn:
Yeah, no, it's true. And I think, I will say that one of the saddest things having done my program is getting to the end, and I had this happen a few times, where I would have students say to me, okay, after this, I feel like I'm ready to take over the world, but Xian, my mom won't let me go to the movies with my friends.
Rachel Byrne:
Yeah.
Xian Horn:
So, you know what I mean? So I think that's very heartbreaking for me because I think obviously parents want to protect their children, but I think there's a balance to be drawn. And obviously that's your decision to make as a parent, but realizing that your kid has more power than they may even know and I think-
Rachel Byrne:
And more abilities most likely than-
Xian Horn:
Yeah.
Rachel Byrne:
... on them. And that's why I'd also recommend to this mom, get an amazing team around you.
Xian Horn:
Yeah.
Rachel Byrne:
You could find, say for example, your daughter's three, I'm sure you're probably in early intervention therapy and even teachers. Find people that believe in her and that really want to accelerate her through life. Not somebody who necessarily thinks that she needs to be fixed or gets put in therapy sessions after therapy sessions that aren't towards any certain goal that she loves.
Xian Horn:
Absolutely.
Rachel Byrne:
Find something, find the joy because I think that's what you come from as like, and it's that resonate. Find the joy and then skills will develop.
Xian Horn:
Yeah, no, it's true. And also they will change over time, but that can only evolve with some exploration and some freedom to do that. But I think that love, as corny as it sounds, does make all things possible. Because I was so loved, I really didn't feel limited in any way whatsoever. And you know what? Not only did I have cerebral palsy, but I had myasthenia gravis. I couldn't open my eyes for a time for at least a year or two of my life. And I think the great thing about being a happy kid is that I almost didn't notice. And so at some point, my eyes did open up again and you know, I had a cyst on, on my armpit. And also having great parents in that way. We had one doctor that wanted to cut across my left breast to get to this cyst and my parents being smart and saying, well, the cyst is here. Why are you cutting across [crosstalk 00:33:11]? You know what I mean? So they were able to advocate and get a second opinion and the third opinion. And I also think, yeah, so realizing that you are your child's best and first defense, but also realizing that they will fall just like any other child will and they'll get back up.
Rachel Byrne:
And I think you bring up a really good point because this came up in a lot of the women's health program and the work that we did there, is that when you're looking at how other people perceive somebody else's body. And their perception on that, thinking that, okay, well, what does it matter if you have another scar across your chest? What does it matter, because you may already have a mobility issue, if we do something else. Well, it does matter. And we have pride in our bodies and we have pride in everything that we see. And so I think that point there to bring that up and to make sure that you do advocate for your children and for yourselves. Even a lot of young adults listening as well. It's so important because some people will be like, ah, you know, you've got all these other issues. So this isn't a big deal. But if it's a big deal to you, then make it heard.
Xian Horn:
Yeah. And I think also if we're going back to stereotypes for a second, I think it's also important not to be the creator of our own stereotype. And let me tell you what I mean by that. Actually that first time that I performed True Story Project for NYU, one of the girls came up to me afterwards and she said, Xian, I hope you don't mind if we're friends because as you know, and this is not something that I personally believed, but this is what she said. She said, as you know, having a disability means it's hard to make friends. And I looked at this beautiful woman in front of me and I said, look, I know where you're coming from, but I got to tell you that in my experience, if you show that you're okay, you're comfortable in your own skin, other people will feel the same way too. And I don't think it has to be that difficult. And I saw her eyes sort of light up in this way, realizing that this idea she had didn't have to be true. And wasn't true.
Xian Horn:
And so I think oftentimes we're thinking about what society's saying about us and if we buy into it or if we decide before we've even begun that this is the case, then we're actually cutting off possibility and the ability to break a stereotype and be different and be ourselves, be our authentic self. So I think this is also true.
Rachel Byrne:
I love that.
Xian Horn:
No, because I think parents can also have this idea. Well, maybe my child won't be able to go to prom if we don't fix this or... And I think putting aside the things you think are possible is really important to ushering more possibility into your child's life too.
Rachel Byrne:
And just so everyone knows, this is going to be on our Instagram story. So you can go back because I'm going to go back and listen to what you just said over and over again, because I think these are things that, no, it's like, how do we have change behavior? How do we actually have these things happen? Well, a lot of it is this self-reflection and this opportunity to educate ourselves on a different reality sometimes.
Xian Horn:
Hm-mm. And I think also we have the ability to create our own standards, to create our own beauty standards. I mean, that's one of the things I wrote about during quarantine is how everybody's kind of, I feel like I'm questioning a lot of beauty standards now that we mostly have had time at home. And what do they really mean and how important are they really? And how much is it? When we're here at home, are we doing it for ourselves? I hope so.
Rachel Byrne:
Yeah.
Xian Horn:
But I think we often are looking at what other people are doing or saying or thinking about us and we forget that we can be the creator of our own narratives and our own path. So I think-
Rachel Byrne:
We have one more question and I definitely want to [crosstalk 00:37:30]-
Xian Horn:
Oh, great.
Rachel Byrne:
I don't want to ignore it. So with the crisis like COVID and the racial injustice happening, how can we better elevate disabled voices, especially black and people of color? Like what is, there's a lot of advocacy work obviously for us to do in relation to the disability community. But there is this intersection between what is happening now with racial injustice and what is happening within the disability community. And you sometimes, you can't separate the two, but you can, depending on the situation. What are your thoughts on that and how we can advocate right now and how we can elevate people's voices and what we can do amongst ourselves?
Xian Horn:
Well, I think if you see someone that you feel you want to give that moment to. Let's say you see something that you, a tweet that you like, retweet it. And I also think that doing something like this, inviting people on your Instagram and having a conversation with them. We may not all be people of color. We may not all be women or men, but we can support each other. We can be allies in this.
Xian Horn:
And I think also it's knowing when it's our time to give the mic to somebody else. And I think, and so I actually, it took me about a week to process everything that was going on with the protests and things. And I also didn't want to just jump in for the sake of jumping in. I wanted to make sure that I was saying something that could support my friends and family going through this in a very, from their own lived experience and in their skin.
Xian Horn:
But what I wanted to do was just talk about, because I had a friend ask me, why is this happening right now? Right? Why is this happening? And you know, I said, I really think that we're all sort of pent up, we're all looking internally. We're all cooped up. And I think that there are these things that we're facing now. We can't look away from each other's pain at this moment. And that's a good thing, but it's also incredibly... I mean, it's a growing experience and all growth requires pain. So I think the most important thing is not to look away and to give space where we can to our friends and family and especially those of color, right now. And I don't know. That's, that's been sort of my...
Rachel Byrne:
And I think educate ourselves. Educate and looking at...
Xian Horn:
There are [crosstalk 00:40:14].
Rachel Byrne:
I'm a woman with white privilege and I know that, and I've got a lot of self-reflection to do and not expecting that our friends and family who are going through so much already right now, have to educate me on things that I don't know. There's so much resources out there that we can all go learn about and particularly around disability as well. As you said, this might be the time where we've passed the mic, but it's not taking away from, we have incredible people who are part of the Foundations, our friends who are doing fabulous work. And I encourage you all go follow them. Go learn about what's happening. Go learn about what they're doing. Have them part of your inner circle. This is the whole thing. Have them part of your inner circle for friendships, for family, in the workplace.
Xian Horn:
Yeah.
Rachel Byrne:
And I think we can all bring that into the conversation and be part of that.
Xian Horn:
And also I think having one on one deep conversations with your friends and family that you love, because I also think that there's this temptation to go social media blitz about these things. And in a way, I find that more performative than genuine at times. And I think it's important that you're just looking inward, looking outward to learn, and I mean, we're in to grow the... No movement grows in a vacuum, right? So, I mean, when you look at the LGBTQ+ community and you look at the disability rights movement, none of it can happen without allyship. So it requires all of us. So that's why, if you ask me that question, I can't answer that alone. And not having the lived experience of what it is to be black. I certainly wouldn't want to answer that. But I think this is a collective question that we all need to work together to figure out.
Rachel Byrne:
Yeah, absolutely. And I think there are all those different roles then, when we are talking about advocacy, where it starts. As you said, starting off talking to families and friends, starting then talking to colleagues, starting then broadening your... If you get an opportunity to address a room, if you tell your story in that environment. If you then want to get involved in petitions and then thinking about legislation and all those different things. There's so many steps to make true change. We've got a fabulous post up from Sarah [inaudible 00:42:49] about voting. Whatever your opinions are, go out and vote.
Xian Horn:
And I know that a lot of my friends are, because of pre preexisting conditions, really can't be protesting right now and all of those things. And so I think there's other ways to do it, to get involved. And I think what you were saying, sharing resources, watching films like Just Mercy or the Innocent Files, I believe on Netflix and sharing your thoughts with people. But also allowing space for people to open up to you and share their experiences with you is really important.
Rachel Byrne:
Absolutely.
Xian Horn:
So, yeah. So anyway, great question.
Rachel Byrne:
I know. That was a good one, but thank you. I think we definitely don't want to skim over what is reality and what is happening right now. And I think it's something that there is a lot of inner growth that a lot of people are doing and change. There's, as you said, no movement happens in a vacuum and the amount of history and advocacy that has happened with disability rights, with LGBTQ and with racial injustice. These things all need to come together. And I think it's a wonderful question to ask because let's all keep talking about it. And I think that's the piece.
Xian Horn:
Yes. Has anyone seen Crip Camp on Netflix? I got to give Judy Heumann, my friend, a plug there. If anyone sees Crip Camp, it gives you a sense of basically our history as a disability rights movement, where I don't think I was aware with the fact that people starved themselves to make 504 happen and there would be no ADA without 504 and things like that.
Rachel Byrne:
So please, that was going to be my next question. Where are some resources that you go to? Obviously, Crip Camp, I couldn't agree with you more. If you haven't watched it, go watch it.
Xian Horn:
But I was going to say something about intersectionality there because what I learned watching the film was it was the Black Panthers that fed Judy Heumann and her advocate friends, her activist friends, and also they mentioned a lesbian group. And what I'm saying is that I think all these groups that feel, in some ways, the underdog or marginalized, I think we have to band together and support each other because we're much better together. And I was very moved by that because sometimes I think these movements can get very insular. And I think what's exciting about right now is that this is something everybody is being forced to talk about. And so I think this is when real change happens, whether people feel comfortable or not.
Rachel Byrne:
Yeah, I agree.
Xian Horn:
Yeah. And I think it's important we get out of our comfort zone and have these conversations.
Rachel Byrne:
Who are some of your other incredible mentors that you look up to that people could... If they want to think about who's someone that I can go look at the work that they do, research what they've done? Who are some people that are on your top five? Do you have a top five? Who are they? Just putting you on the spot.
Xian Horn:
That's a really, really tough question. I mean, I think Marlee Matlin is somebody that I now personally know. And I think that's really, for me as a little girl, to think that I would ever know her. Because for a long time, she was the only person with a disability that I would see in any kind of TV show or even she was on the Apprentice. But she's just such a generous person. And I think that's a really... And I'm going to say that some of the people on my list aren't disability advocates. And I think that's important.
Rachel Byrne:
It is.
Xian Horn:
[crosstalk 00:46:41] that anyone can be your role model and you can be a role model to anyone. And I think that it's important to realize that mentorship goes both ways.
Rachel Byrne:
Yep.
Xian Horn:
Mentors wouldn't do mentoring if they didn't learn anything from you. So I think, for me, there's some people that I've been really inspired with their generosity. So Desiree Gruber, who is the creator of Project Runway is a friend who's always supportive. And she inspires me because she's more interested in getting other people's stories out there and supporting other people. And so I just love to see selfless examples.
Rachel Byrne:
Yeah. And it was actually because of, I was able to show her my sticks that were tricked out for the CP Foundation Design for Disability Challenge. Right after we walked that runway, I was talking to her about the fact that Nike sponsored this. And next thing I knew, she said, oh, we should do something like that. So again, it's having allies as well.
Xian Horn:
Yeah.
Rachel Byrne:
Mentors and allies. So let's see. So Judy would definitely be one of them. And what I love about Judy is she's not interested in telling her story or the fact that she changed history at all. She's more interested in the person in front of her. She has zero ego. So having her as someone so selfless, it also tells you whatever you accomplish in life, don't take yourself too seriously because-
Rachel Byrne:
Yeah, absolutely
Xian Horn:
... people who are really doing the work don't need to have the fanfare or awards or anything like that. And so some of my favorite mentors are also people who are just allies. So for example, at NYU, one of the first places that I spoke at NYU, the university side, Anita [inaudible 00:48:37], she actually introduced me to AT&T and that's how I got involved in the AT&T T Disability Challenge. But she's has zero interest in being in the forefront. Her goal is just to push everyone else who's doing great work or people with disabilities to make sure... Her concern is okay, my client wants to have a device that helps her put in a tampon. I'm going to figure that out.
Rachel Byrne:
Yeah.
Xian Horn:
You know what I'm saying?
Rachel Byrne:
Absolutely.
Xian Horn:
And she's been doing this 20 plus years. So I think that I really gravitate towards those that are serving others first. And those are just three people who come to mind. I'll come up with more. There's so many more, that's why my brain is like
Rachel Byrne:
I know. Probably a big one that I know that both you and I, yeah, we look up to her regularly is Loreen Arbus.
Xian Horn:
Loreen. Yeah, she was [inaudible 00:49:36].
Rachel Byrne:
Not only has she been so supportive of us both personally, but the work that she has done for women and women with disabilities is just extraordinary. And you've written a really nice piece on her in Forbes as well. So go read it, people. Go educate yourselves.
Xian Horn:
Yeah.
Rachel Byrne:
Back to that question. How can we bring all this together? Learn about some people that are really making change.
Xian Horn:
But I also think what she really taught me, Loreen, is that secure women support other women.
Rachel Byrne:
Yeah.
Xian Horn:
And we can boost each other up and we really should collectively be each other's cheerleaders. I think that's really important.
Rachel Byrne:
Yeah. No, and I love that.
Xian Horn:
She uses, and the thing is, here's the thing about privilege. Privilege itself, it can be a bridge to a lot of opportunity if you use it. So she uses her privilege, the fact that she has these resources, that she knows so many wonderful people, to connect other people. So she doesn't keep that privilege to herself. That's where privilege is a problem, is where we're not aware of it, we don't understand what we don't know. And if we take what we have and keep it and hoard it...
Rachel Byrne:
Yeah.
Xian Horn:
Anyway, so I think she's a great example of someone who's just incredibly generous with what she has and wants to make sure great things are happening, whether she's involved or not.
Rachel Byrne:
I know, I know. And she, for those that don't know, her parents actually founded the Cerebral Palsy Foundation a long time ago, and she is the biggest supporter. But as you said, this thing that she does is like, Rachel, you need to meet this person and you need to meet this person and connect and tell your stories and work together and come up with a solution. And it's really quite amazing what she does. And she opens up her home so generously all the time. But I think that's such a nice way to end, because I think you've given so much of your time to chat already and you and I could chat all day, but probably [crosstalk 00:51:52]
Xian Horn:
[crosstalk 00:51:53]. I could this all day. And anyone who wants to. Maybe there was a question you wanted to ask, but were too shy to put on the chat, feel free to DM me, add me, I'll add you back. And I just want you guys to know that I can't wait to see what you do. I think one thing I've learned from my mentors is that we all have a part to play.
Rachel Byrne:
Yes.
Xian Horn:
And so now it's everyone's turn. This is the time. I think this is the benefit of what we're going through right now is that everyone has had time to reflect and now we can take action.
Rachel Byrne:
Absolutely. Well, thank you. Thank you. I can't wait to actually see you in person.
Xian Horn:
I know.
Rachel Byrne:
And one day to actually be able to...
Xian Horn:
Socially distanced healthy hug. Okay. Couldn't see my hand coming up.
Rachel Byrne:
All right, yep. We're doing it.
Xian Horn:
Okay.
Rachel Byrne:
All right.
Xian Horn:
I'll talk to you soon.
Rachel Byrne:
Bye. Thanks everybody for listening.
Xian Horn:
Thank you so much for joining us.
Rachel Byrne:
All right. Bye, everyone.
Xian Horn:
Bye.