Embrace It with Lainie & Estela - Smashing Disability Stigmas
Embrace It with Lainie & Estela - Smashing Disability Stigmas
Embrace It: Episode 57 - Xian Horn, Catalyst for Inclusion
Join us for an inspiring episode of the Embrace It Podcast as we welcome the radiant Xian Horn, a true catalyst for inclusion. Xian, a joyful half-Asian woman with Cerebral Palsy, wears many hats: teacher, writer, speaker, beauty advocate, blogger, and Exemplar for the AT&T NYU Connect Ability Challenge towards creating Assistive Technology.
Named one of the 21 Leaders for the 21st Century by Women's eNews in 2017, Xian Horn's journey toward reconceptualizing leadership has left a profound impact. From companies like Viacom, and Target, to AXA Equitable, she's reshaping narratives using her testimony and mentoring prowess.
In this episode, we delve into Xian's mission to reshape our notions of self-esteem and collective purpose, particularly for women. Through her non-profit, Give Beauty Wings, she's championing empowerment for people with disabilities and marginalized communities.
Tune in as we explore Xian's remarkable journey, her tireless advocacy, and her vision for a more inclusive world.
Don't miss this insightful conversation on embracing diversity, fostering leadership, and the transformative power of self-love.
- Learn more about Xian Horn
- Follow Xian on Instagram
- Sign Xian’s Transportation Petition
- Book an EmBRACE It Workshop
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- Find more on Charcot-Marie-Tooth (CMT) and patient resources at: HNF-cure.org
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Hosted by Lainie Ishbia and Estela Lugo.
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Welcome to the Embrace it series, where women with all types of disabilities can be real, resourceful and stylish. With each episode, you'll walk or roll away with everyday tips, life hacks and success stories from community leaders and influencers. So take off your leg braces and stay a while with Lainey and Estella.
Speaker 1:Hi, I'm Lainey and I have CMT. I'm a neuro-muscular disorder affecting approximately 2.6 million people worldwide.
Speaker 3:That's as many as MS. We believe disabilities should never get in the way of looking or feeling good. Both of us wear leg braces and have learned through our own personal journeys to embrace it Brought to you by Launchpad 516 Studios.
Speaker 1:each episode is designed to challenge your own stigmas and beliefs around disability. We want our listeners to get the most value for their time spent with us, so we interview some of the most empowering disability badasses in the world. Through storytelling, personal experiences and tips, we're all reminded of our own strengths and endless potential.
Speaker 3:For more information and exclusive resources, check out our websites at trend-ablecom and hnf-curorg, and don't forget to hit the subscribe button for future episodes and special promos.
Speaker 1:Welcome everyone to another episode of the Embraced Podcast. Hey Lainey, hey Estella, this next guest. Her name is Sean Horn and she is a public figure. She's a humanist, a beauty and disability advocate, a Forbes contributor, teacher, a chocolate, caffeine and also a ski pole aficionado. Welcome, sean.
Speaker 4:Oh, thank you so much for having me, and you know, there's Instagram bios coming handy. I'll tell you yes.
Speaker 3:And Sean, before we even get started, you have like the coolest name spelling ever, like I mean so for everyone's like, yeah, tell us how you spell your name. So what is? How do you say it? And I'm trying like cause an X is very hard to play. I don't even know how you do. Oh, no, I get it.
Speaker 4:I wouldn't know how to say it if it wasn't my name either. Um, yeah, thanks dad. It's Sean or Sheon X-I-A-N. Sean or Sheon.
Speaker 3:Such a cool name, sean, so welcome, and you're all over the place. I mean, estella was like look at this woman, she is moving up, she's everywhere. We recently, like actually met you in person at the runway of dreams fashion show in New York and, um, I took a picture with you and you now are like who is this? You're probably like who is this person in the picture, Cause I don't think I've got words to each other. Estella was like Laney, get in the picture.
Speaker 4:So I well, you're unforgettable because you were the one that didn't remember me, for the record by I'm old, I don't remember me.
Speaker 3:Perfect.
Speaker 4:So, yeah, not at all, but no, I mean, uh, back to the name for a second. I mean I think this goes back to the Embrace it theme, which is, you know, traversing the world. A little background about me traversing the world with two shiny ski poles with an X in your name. Um, you know, it's, it's as if, you know, I was meant to stand out in some way and I think we all are, you know, maybe less, not everybody's as obvious.
Speaker 4:Um, you know, but there was something to to growing up, you know, in a very visible way or a very apparent way, um, to most of the world, especially in New York city, um, where I'm, I was born and raised and where I'm actually podcasting with you right now, um, so, yeah, I mean, I think again, you know, being named for a, a Chinese city, um, not pronounceable, actually makes it so that people will start conversations with you. How do I say that? And so, as I've made a lot of friends because people can't pronounce my name, so there are some perks I and I, actually, I always joke with my friend Brian, who also has cerebral palsy, that we're going to start a podcast called cerebral perxy about all the perks I love that that is like a fantastic name and you buy away for the record.
Speaker 3:You have me beat and so the name is. Even though it is said exactly how it looks, it is often confused. But Sean, with an X, trump's Laney.
Speaker 4:As you know. All right, I like confusing people. For the record too, you know people. People won't forget you.
Speaker 1:Exactly Well. You're definitely unforgettable and we would love to hear you know you mentioned you have CP, cerebral palsy. You can take us back and just give us a little bit of an overview on how growing up with a disability with a unique name in New York City how you you know how you're upbringing kind of impacted the wonderful work that you're doing today.
Speaker 4:Yeah Well, anyone who's heard my story before knows that I have to start with my parents. So it was great to give data shout out right from the beginning. But you know, I think a lot of what informs my reality and how I see the world is the fact that I had artist parents who taught me anything was possible. I mean they were always. You know, my mom ran her own department and said Estee Lauder and Avon. My dad had his own law firm. They treated me like a future leader and, being an only child, I got all the love and now I say it's my duty to give that love back Right.
Speaker 4:And when we're talking about privilege, I've been privileged in love and so I always say privilege itself is not a villain, it's what you do with it or don't do with it.
Speaker 4:So if you're not using your privilege to make space for somebody else, that's when privilege is a problem or when you're using it to stay willfully ignorant.
Speaker 4:But you know, I think all of us can be allies to each other and that you know a lot of times as disability advocates, I'm sure you guys see this all the time that you know people assume you know about all disabilities and I think, as a, as a true advocate, what we need to do is be hearing from our friends and listening and taking in their stories and and making sure that, when it's not our experience that we're saying, have you talked to this person who has a lived experience of X so that we're making sure that, yeah, we shouldn't be representing all disabilities? You know, I do believe, you know, my work is even bigger than disability in the sense that I think it's about our humanity and the oneness of humanity, but celebrating the differences in the inside of that oneness. Right, because we all, you know, we all have something different to offer, even if we have the same disabilities. Not one person has the same exact story.
Speaker 3:Yeah, exactly, which is why cerebral palsy is different for everyone.
Speaker 1:right, we've had another guest on the power power carousel yeah.
Speaker 3:We're on the power of palsy, but you know I love that. Like I can't speak for Charcot, marie and tooth disease and Stella certainly can't, we just know from our own experience. So can you give us just a little glimpse before we start talking about the stuff that we really want to talk to you about, which everyone is listening.
Speaker 3:you guys hold on, because we've got some great tips and tricks for you for living with disabilities, but give us a little intro of your story, like the you know, how did you know you had CP and what was your life like?
Speaker 4:Well, I have to tell you that, you know, obviously being diagnosed at a year old, so I wasn't sitting up at about five months. And my Chinese grandmother was a doctor since the 40s and she knew, she knew that certain milestones were supposed to be happening at a certain age and I wasn't sitting up and so they took me to the doctor every month for about six months and it wasn't until my 12 month. You know, checkup that they said okay, she's got. You know, mild cerebral palsy. You know my parents didn't even tell me what type of cerebral palsy I had. I had no idea that there was all different types of cerebral palsy either. They just told me it was mild. And I'm not sure, you know that might have been exactly what the doctor told them at the time. But you know my parents said no for good or bad. They said no to grief counseling and my dad said we're just going, she's a happy kid, we're just going to keep raising her this way.
Speaker 4:And you know, as soon as I could get in, I mean, he had me on a surfboard at six months. You know I was always yeah, my dad's an athlete, so you know he's pretty active, so he taught me to swim, you know, when I was five, and stuff like that. So I mean, I think what I felt as an only child was that I was more because I was different. They really gave me a sense that I could do anything as soon as I could speak. They were asking me what are you dreaming about? How can we support you? And I realize now what a luxury and what a gift. That was A lot of times in the self-esteem work that I do, which we will get to, you know. I remember once asking the girls to write about their day and one of the girls said to me wow, it's so great to write about my day. Nobody's ever asked me how my day was before. And that really opened my eyes. And this is why my first Forbes article was called as leadership of luxury, because I realized that if you're not sure your kid's gonna make it through surgery next week, you might not be talking to them about what they're doing in 10 years. And if you live in a dangerous neighborhood and you're just hoping your kid makes it home safe, you might not be talking to them about what they're doing in 10 years. You're thinking about the next 10 minutes. So this is not to judge how anyone else was raised or how other parents do it, but I realized that in a lot of ways what made me want to advocate?
Speaker 4:I always thought that the advocacy I saw seemed very angry and very and there's a lot to be angry about. I wanna be clear that I think there's space for every kind of voice in our community, but I just didn't resonate with me because I had a very bubble-like experience of I get to see the kindest side of New Yorkers walking with two ski poles every day. I wouldn't be able to go half a block without somebody opening a door for me or offering or starting a conversation of some kind. So for me I was very conscious of what and the people that it brought into my life and I know that that's not everybody's experience. In fact I know that that's a rare experience of disability and I joke I say that my experience of disability and not that I've ever been pregnant, but it's kind of like being perpetually pregnant in the way that people treat you.
Speaker 4:I have lots of strangers. Let's say it's raining. Oh, be careful, or we'll give up a seat, not in the subway. Somehow all chivalry disappears when you're in the subway. It's a tie, yeah, or in Times Square for some reason. But everyone outside of Times Square in the subway are generally incredibly kind. In fact, I almost overly so. But because of that, I've received so much kindness, even from strangers, not just my parents that I feel it is my duty to give that back.
Speaker 4:And also, with the self-esteem work that I do, it really came out of the fact that it really did not sit well with me that anyone would feel like less because of their disability or because they're a woman or any way that they feel different or outside.
Speaker 4:So the self-esteem work I do isn't just for the disability community, it's for humanity. I hope to see that everyone celebrates their beauty in equal measure. So that was really the path I was on and I was very content doing that at NYU. And then I got asked to judge an assistive technology competition through AT&T. I knew nothing about assistive technology. I made that very clear to them and I think you can relate to this, having lived experience of disability. When your expertise is your lived experience, boy, it opens up your world. So I'm not a technologist and I ended up doing this and then being asked to speak on film, even though I'm not a filmmaker for real abilities and then joining their film selection committee and then realizing representation was so important. Not just let me back up a little. Before I even did myself with STEAM classes, I also pitched the Dove campaign asking them to include people with disabilities in their advertising.
Speaker 3:And the reason for that was A cause for that, because I think that is so like I read that about you and your story. I watched that, yeah, yeah, okay. So I mean tell us about that specifically, the campaign and what you did and how old were you, and yeah, well, you know the thing is, it's so funny.
Speaker 4:Everybody always wanted to make me a poster trial for something and I really resisted it because I thought this is the obvious thing to do. I already call enough attention to myself on these New York City streets. Last thing I need to do is the obvious, and I think what happened for me was my second job ever in New York was for a theater that had 45 members total, 15 with disabilities, and they were actors, studio actors, kennedy Center, award-winning playwrights writing in their journals about suicide attempts, about body image, about disability, identity, and there was a lot of dysmorphia there. And I looked in front of me and I saw the most gorgeous, charming, beloved people that I'd ever met and I thought, if this is how they're doing and I look up to them, how's everyone else doing? And I wondered why is it that? I know it sounds strange, but I didn't to your question earlier.
Speaker 4:I didn't even really, even though I knew I had cerebral palsy from as soon as I could remember, I never realized I was that different. Like I think there is something generational where I think used to be at least 20 plus years ago, when anyone that was growing up, and 100 years ago, anyone that was growing up different had to adjust to their environment and be scrappy. I think in the last 10 to 15 years, with social media and our awareness of so many different communities, now there's an attitude of I'm here, you're supposed to accommodate me, but I think that that is relatively new. But I think the positive part of that is I genuinely did not. I knew I was different, but I genuinely, outside of the obvious, the ski poles thought I'm just like everybody else.
Speaker 4:And I remember being nine years old walking through my lobby where we had a floor to ceiling length mirror my entire life and I only then looked in the mirror and saw my left knee went in a little bit as I was skiing past and I was like, wait a minute, it never occurred to me. I thought I walked just like everyone else, just with poles too. And when I saw my knee go in I was like, oh, I am different, like I do walk differently. That's how much of a bubble. And you could say it's delusional. You could say many things, but honestly I think in a lot of ways there was a lot of benefit to really not feeling that different. I knew I was different, john.
Speaker 3:It's already so interesting to me. I mean, one of your parents is Asian, one of your parents is Jewish I'm also Jewish, by the way so that alone is like makes you different, right? But yet you're talking about your disability. You have so many things that make you unique all of us do but yours are very visible. Okay, we have to go back to the dub campaign. You have to tell us about that. But also, what are ski poles? Like people who are listening and don't know.
Speaker 4:And it kind of feeds into when we talk about travel later. It'll feed into that too. But no, but I promise I was getting there. My point was, my point was that I really was confused as to why I was the only one here feeling like my disability was an asset and for many years it felt like that was the easy part of my life. I cut the lines of Disney World, the airport, et cetera, and I thought and it was actually I mean, I know it sounds actually kind of like I must have been under a rock, but in a way I was A very big New York City rock, let's say 30 rock, since it's in New York, but no.
Speaker 4:So, going back to the dub campaign, the reason that I was thinking about this is, again, I saw my friends struggling and I said, okay, I think it's probably because they didn't have control over who their parents were or if they went to the right schools, which all of that. My parents really did their research. I went to UCP, united cerebral palsy, which meant that in preschool I went to school with kids who were just like me. We were all different, but even when I was mainstreamed quote unquote later on being the only girl with ski poles, or the only girl with cerebral palsy in my class, even though there was another. There was one other girl who happened to be, by the way, asian and had CP also, so I think that helped too. We were, you know, and representation yeah.
Speaker 4:I mean the fact that the one other person was, in a way, we're very different but also having similar backgrounds. So she was one of my best friends, but they made sure to put one of us in each class so that I don't know for our individuality, for our development, like. But even when I was in situations where I was the only, you know, visibly disabled person, I never felt alone and I never. And because I didn't feel that different, I'm like well, no, I belong here, and so it's gonna sound very strange. You know, I was very popular in elementary school, I was very popular in junior high, and it was only in high school, when I started to count myself out, that I started to feel ostracized and not welcome. And it's cause I loved everybody and so this idea that I couldn't be loved back was really disturbing to me. But I, when I look at that, in a way, I bullied myself, I think, and people responded to how I felt about it in kind.
Speaker 4:So, going back to Dove for a second, so I what happened for me was that I really started to think about how come? Yeah, I think I just wanted to talk about the high school part because I don't want people to think that I just never had self-doubt or I never was insecure, because I was, incredibly, because I was looking at validation through other people, which is where I had gotten it before, and it stopped working for me and I realized that that's not enough right. We can't base ourselves over how much we're liked or disliked. But going back to Dove for a second, you know, when I realized that you don't have control over what schools you go to, what kind of support systems you have, I said where else do we get our sense of self-esteem? And you could answer a lot of things like media in general.
Speaker 4:But I think the answer that came at the time was the beauty industry, and Dove had already done beautifully inclusive things for, you know, women of all sizes and older women, and so, to me, including people with disabilities and their campaign was not only the next step, but knowing how my friends were doing it was incredibly critical to their survival, in my opinion. So I didn't really, you know, I had no experience. I had no advocacy experience at all, but all I knew was that if I didn't do it, who would? So I filmed a minute and 23 second video in my mother's living room with a friend from church who did it for free. We had zero budget.
Speaker 4:If you saw how messy that room actually was outside of the room I have some behind this and I always laugh and I see the behind the scenes photos because I think they're like what? But anyway, and I made it for one person, I didn't say I mean, this was the early days of YouTube and it didn't even occur to me this idea of going viral. You know, I made it for one person that apparently no longer worked at Dove, which he shortly told me. But my cousin saw the video and she said you know you already made the video, why don't you just share it on Facebook? And so I did. And I sent it to a few Facebook groups that had some themes connected to the video in it and my last line was oh, I forget the line now, but the word positive, the word positive was in it. So I sent it to a group called Positively Positive and they posted it on their group and that video got, I think, 16,000 views in four days and that's not a lot. I mean, it's not Justin Bieber viral.
Speaker 4:But I got letters from the Philippines. I got letters from Australia a man with AIDS for 30 years saying you know what it meant to him a woman with rheumatoid arthritis. And I have to say, in that moment I realized how small. I was looking at disability. I was really thinking about mobility disabilities when I made that video, as most people do. And I will tell you, the video was not captioned, the video was not audio described, Because I didn't even know about those things at the time.
Speaker 4:How did Dove get it? Well, guess what? They got it from two different I knew two different sources showed them the video that they already had Dove as a client. I won't mention them by name, but all I can tell you is, after they met with them, I never heard from them again. I never heard how Dove felt about it. I never got a response from Dove directly. It just died on the vine and I actually think in a way, it was meant to be, Because I think when I first started this, Dove was the end-all-be-all and when they said no, I realized, wow, this is so much bigger than one beauty company.
Speaker 4:And the fact that the majority of people actually supporting the video had no disabilities at all meant there was something more universal that people were getting. And in a way, it was a gift to me that Dove said no at that time, Because I think I could have just gotten very focused on that one thing. It could have been a shooting star in the sky and then gone, but because it didn't happen and other things happened, like being handed classes at NYU having never taught a day in my life, by the way so it opened my world in a way that was unexpected, and it did not go, and this is why I'm always telling you there's no such thing as failure. If you're still here, you haven't failed, and I was a telemarketer in my previous life, so you really have a thick skin for rejection.
Speaker 4:Well, I was going to say when no is 98% of your day. You're not so afraid of it anymore Because yeah and yes means so much more when that's your reality as well.
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Speaker 1:You're tuning in to embrace it with Laini Anastella, brought to you by Launchpad 516 Studios. You know I love your passion and obviously it's not just the beauty industry that you've put that passion to work for. You are a Forbes contributing writer and you've been featured on the White House blog and I think in some of our previous conversations you really seem like someone who just can see and identify a problem and then look for solutions and put your energy towards what's needed at that moment. Is that accurate?
Speaker 4:I mean. I think that I mean when people come to me and ask, in fact, someone did that they're in one particular area and they wanted to break out. And I said, well, where do you see the need areas? Because that's where you need to go. And even when I started with the self-esteem, I was content doing that and then I realized, wait, there's assistive tech, there's adaptive fashion. And then I have to say, on a positive note, that the beauty industry finally, within the last two years, has gotten the memo and they're playing catch up and doing it fast. So there is hope.
Speaker 4:It didn't happen in the moment that I wanted it and didn't happen with Dove, but even Dove has improved Eventually, yeah. Yeah, I mean I think they could be doing more, but I'm glad that they're doing anything. To be honest, and you know what I mean, that was more than 10 years ago. So leadership changes and attitudes change and I think that, honestly, there is a wave of change. I've always said that I thought disability inclusion was inevitable, but that doesn't mean we can't be a catalyst for it.
Speaker 3:Yeah, so speaking of things that you, when you see the need, as Estella said, you make things happen, you find solutions. So there's so many things that you are knowledge about in the world and we're going to include, for sure, info for everybody who's listening on your self-esteem workshops and your articles and forum and all the stuff that you're doing. But can you talk about the need when it comes to transportation for people with disabilities and what you and how that came about for you and what you're doing about it?
Speaker 4:Yeah, and speaking of the need, I mean I wasn't planning on being a transportation advocate, I can tell you that much. But after 22 years on Accessoride, when you have to wait two hours or you get left behind or you're five hours on the same vehicle because you're dropping off so many people on all boroughs, I mean I went through so many things that I actually, when I say 22 years, I took a five-year break because of how stressful it was when I was in college. No, because if you're only home for the break and you only, have, let's say, a week and a half with your family, you don't have two hours to wait every single day. And I just said you know what for my mental health, I've got to just and keep in mind I was on Accessoride even before GPS, so it was even worse, which seems almost unfathomable for people. But even so, I think it wasn't until I was left by an Uber in I think it was it 2019? I have to look.
Speaker 4:I was left by an Uber, my best friend and I my best friend's on she's on a walker and we were leaving my uncle's house in Naples, florida, and this guy had come 15 minutes out of the way to go to this gated community that we were in, took one look at us and backed out of the driveway. My uncle said where are you going? He just said I canceled the ride and I had been passed by cab drivers before, and always my attitude was if they don't want me, I don't want them. But this is different. This person had my name. They came all this way out and still bailed, but my first thought was he did not speak back to my uncle.
Speaker 4:I really felt that in this case, this guy just had no clue what to do with two of us, and so I called Uber and I said listen, I don't want this guy fired, I want him trained, because I'm sure he has a family. And it was pretty clear he was not from the United States. I was actually looking forward to him because he had the same name as one of my best friends, who's Haitian, and I was really looking forward. You know I really that's another part of my New York experience. You know cab drivers, doorman, they're all my best friends. You know they're the guys that helped me the most. So I, you know I've always tried to return the favor in some way, and we have.
Speaker 3:I have the greatest conversations and taxis and ubers, so okay you are so likable and I totally I'm sure that you have besties all over New York City and wherever because you're super likable and obviously bubbly but you couldn't have been just standing there. That Uber the nice guy who you saw in the picture with you know that you wanted to talk to. He pulled away. I mean, like were you pissed?
Speaker 4:I mean oh well, first of all, I was. I was shocked. Oh, and my uncle? You know, the reason I actually didn't get pissed is that my uncle was so upset that I was busy calming him down. I said, listen, you know, because my again, my, my thought is I don't want anyone who doesn't want me, so let him go, you know. But at the same time, I was thinking about the bigger picture and I realized this I must not have been the first person and in fact, if you read that article, what I did was I collected up all the experiences that I could from my friends on Facebook and elsewhere, you know, because I was shocked that when how not shocked everybody was.
Speaker 4:And somebody I know, for example Habingerma, wrote about the fact that she was left by three Ubers in one night in New York City because of her service dog. I've since learned that also when you have a service dog, that that a lot of times it's also within the Islamic religion that they don't want dogs in their car. There's a religious reason behind that. Now, I don't know exactly why, but so it's so, anyway, what I've learned time and time again whether it was the dove pitch or assistive tech or fashion that there's. So every time that you have an issue, there's a hundred thousand people behind you that have the same issue, that have not had a chance to share their story.
Speaker 4:And so, you know, when this Uber thing happened, I wanted to make sure that I wasn't just sharing a kind of crappy thing that happened to me and my best friend, but really talking about what is the larger issue here. And my shock was not the fact that this happened, because of course, I've been left by cabs, you know, passing by before, but it was more Uber's lack of response and their refusal. They actually told me we cannot train them because we don't recognize them as employees, and so it became more of an issue of what is the larger problem here that we're not addressing, you know, and it's not just Uber, it's, I think, many different forms of transportation and yeah so no. So that was the beginning of that. And then you know there's an incredible program that I was a part of. The good news, you know, and it's also kind of bad news because they're trying to cut it, but the Accessoride, in response to their horrible service, created a pilot program where they allowed 1200 of us to travel same day, by the way, if you're on traditional paratransit, you do not have same day options. So this was revolutionary.
Speaker 4:You call a car.
Speaker 3:They call us non-New Yorkers. What is paratransit mean, Like I don't even know.
Speaker 1:Even access accessoride as well, in case people don't use that.
Speaker 4:Yeah, accessoride is the New York City name, paratransit is the national name for, basically, you know, there's many parts of America that are not ADA compliant, especially New York with our subway system, and so accessoride and paratransit nationally were created to, you know, address that gap and to fail safe the fact that they're, you know, not legally, you know, ada compliant. So, anyway, so the way that paratransit works in New York City, you have to book one to two days in advance, before 5 pm. You need exact times, exact locations. That cannot change. There's no such thing as a last minute emergency. You also can't guarantee, you know, if you pick someone up and it takes two hours to get them to their location. So even if you have a pickup time and, let's say, you get stuck in traffic anyway, you're kind of SOL. So so I mean the traditional system. I mean I think anyone that's telling you it's good probably works for accessoride, because everybody else knows that their nickname is stressoride for a reason. Yeah and so. So they create.
Speaker 4:But here was the good news they created a program which used an Uber like app. In fact, now they only recently allowed us to use Uber apps. You could use an Uber like app called Arrow for taxis or curb at one point was part of it and you could book a car within minutes. It was unlimited and available to us, and it was still, on average, cheaper. Those blue and white vans you see in New York, which are the traditional accessoride vans, cost $150 per person per ride to operate and so, even being unlimited, it was an average of $47 per person per ride for the other vehicles which would show up on time or close to it. And so you know it was honestly.
Speaker 4:New York is the greatest city in the world. It makes sense to me. I'm sorry I'm biased If anywhere else I'm biased, I'm biased, but I mean we have the largest transportation system in the world here, and so you cannot compare it to other cities. I hear this comparison all the time. The truth is is that there's a reason we call it a New York minute and I do take Umbridge to the fact that our New York minutes seem to count less than others and this program really was the antidote to that, and they are now constantly trying to cut it and tell people it's terrible and that it actually doesn't work, which I'm sorry. I'm here to be the bearer of truth, which is, you know the cheapest option, which is also the most efficient to me, should be not only not cut, but expanded the standard, yeah, yeah, so that was another, but I'm saying all this to say that ended up becoming another area of advocacy and I got over.
Speaker 4:And if you guys want to sign the petition, it's still active. Yes, please, we'll share it as well. We have 8100 signatures supporting, you know, not cutting this program, but for me, even beyond this particular program, my question is if you're not requiring everybody to travel by bus or subway uh, one to two days in advance. Imagine if you had to book your subway rides one to two days in advance. If you're not requiring that of everyone, then why are you requiring it of us?
Speaker 3:Absolutely Right. But on the Uber app now it is um, like the Uber and Lyft app isn't there a way for people to indicate that they have accessibility and that they want an accessible vehicle? Absolutely. So how do they if, like, people don't know that that are listening, like they just go on the app and that's where they're going?
Speaker 4:Well, you can look for what's called a WAV or wave vehicle. It stands for wheelchair accessible vehicle. Um, you know, I, um, I don't know if there's like a way to say I am disabled, but you have the comments section where you can do that, but there's certainly they do mark, uh, wheelchair accessible vehicles. It's usually at the very end when you're scrolling down. Um, and I have. I'm happy to report that over New Year's, the wheelchair accessible vehicle I took with my first grade best friend, the one I was telling you about, the other Asian girl with CP, um, we, we took it to my second and fourth grade best friend's house and um, and it was less, it was cheaper than the regular vehicle.
Speaker 1:So nice. So win, win for, for, for your friends, and I think I will definitely share the um, the petition and get more support for that. But what happens when it's a more personal interaction and I'm sure there's been times where you have had to really advocate for yourself, whether that's in a vehicle or other modes of transportation Can you speak a little bit to that and, I think, maybe provide any tips or you know, things that people can do to to make those experiences less stressful?
Speaker 4:Yeah. So for those listening to me, you might be saying well, she's a Forbes contributor, um, you know, I've worked with the mayor's office for people with disabilities. I will acknowledge that this is part of why I have used my voice. Beyond this is that I realize I have platforms, and I have wonderful people in my life, um, who are responsive and in positions to help me. So I think, though, even if you don't have that the wonderful thing, going back to my point about social media earlier, I think we now, whether you have, have perceived whether you feel empowered or not.
Speaker 4:Anyone can start a YouTube channel. Anyone can you know. Start a blog. Anyone can tweet, or, I guess, x out I can't believe he stole my initial speaking but anyone can, you know, use what? What's out there, and I mean we see Everyday people going viral, all the time for reasons, because people are passionate about whatever they're talking about and supporting it. So, so you don't have to be Someone with, or you could start a podcast, like you guys did, but there's so many ways for everyday people To, no matter where you come from. If you have the internet, you have now a platform. It used to be, you know, 50 years ago, of ABC, nbc or CBS didn't cover it. You didn't. You know what I mean. It just it was.
Speaker 3:Right, like the everyday person who's listening. Not everyone wants to do such a big thing. They don't necessarily want to be, you know, a spokesperson and, and, you know, create a YouTube channel or make a big thing there. I get a lot of emails for people like what do I do at the TSA line? I don't have, they don't have what I have, what do you call it? And get through faster like they. They wear braces on their leg. They're worried that they're gonna go off, that they have to show them that they have to take off their shoes. They're uncomfortable and they, let's say, they feel like very, you know, uncomfortable in general and they have a bad experience with the TSA officer. Like they don't go. I need to. What do they do on an immediate level and in the moment and then afterwards? You any thoughts?
Speaker 4:Well, I think there's a few layers to this question, so I'm gonna try to answer each layer, which is, first, I think, it's getting comfortable with what it is you know about yourself and you need, because the truth is a lot of us with disabilities, let's face. It wants to assume that people are mind readers and know exactly how to treat us the minute they see us, which which would be great in a utopian world, but the truth is that, yeah, I think some of it is practicing. How do you express exactly what it is you need and if there's going to be something where you already Anticipate there might be issues, or you've had issues in the past. You know getting something like a doctor's note, or Getting you know if you're not good at explaining it, you know, you know, maybe finding, first of all, I do think, for those who can, you know practicing that and having it come from you is is Important, but let's say, someone is nonverbal or what have you? You know, either having something written out or someone who can.
Speaker 4:Yeah, and I will tell you, though I do think that you know we obviously want to advocate for as much independence as possible, but the truth is is that every person on this planet needs help, and there are going to be times where you know If you can't do it, you're going to like if I don't ask for help at the buffet line, I will not eat. Because I walk with two poles, my hands are occupied. There's no way I can carry that plate. And so I, you know. And if there's, you know, I can use stairs from time to time. There are times where the only way up is a couple of stairs and I need to ask a complete stranger for help up those stairs. Now, I know that a lot of people don't have that option. I I want to acknowledge that, but I think being able to be comfortable with what you know about yourself and there will be people who just don't get it, and that's exactly what happened to me at the TSA recently, which is why you guys reached out to me right Was that?
Speaker 4:You know, this woman looked at my adapted ski poles, which are my assistive devices that I've been using forever, and For the first time in 30 years, I tried to separate me from them, which is actually goes against the passengers bill of rights For people with disabilities, because you're not supposed to separate Anyone, under any circumstance, from their assistive devices and when I said these are the only assistive devices I can use, she said, no, you made these this way and like she didn't. Just my issue and the reason why I said something is, you know, if this was the policy which it wasn't, by the way, I have had that clarified. But if this was the policy, there was a, there was a kind or or polite way to express it, but she genuinely treated me like I was bringing AK-47s onto this flight and yeah, and. So If anyone wants to hear the whole story of that since I know we don't have much time left you can listen to the women's e-news podcast that I did, where I detail everything that happened there. But I think for me, what it highlighted was, you know, this whole experience and how people were so kind to me afterwards and shared their own stories. I realized that again, it comes down to this training thing and you know, in case you want to know, there, it was very confusing.
Speaker 4:After the fact, when I did file this complaint, I got a form letter that basically told me it could happen again because my ski poles were adapted and Because ski poles are traditionally sharp, which, by the way, the ends of my ski poles are no sharper than a pen. I checked and so pens are allowed on the plane. So I definitely did not agree with that assessment. And then, about a week later, I got another letter saying that my ski poles were okay.
Speaker 4:And this again talks about sometimes these institutions are almost too big for their own good. And so I was getting ready with a lawyer's letter and all this stuff when this other letter came through and they did inform me that they were sending. The previous letter said in you know, aggressive cases we will train, but did not give me any insight as to what happened to this lady or to JFK Crew at all, which it didn't make me feel like any change was happening. And for me and the thing is I don't want to ruin anybody's life, but I just want to make sure that this doesn't happen to any of my brothers and sisters and family with disabilities. So that was really my concern really in doing this. And so I got this other letter where they basically said that materials were sent to the management at JFK.
Speaker 4:I still didn't know what that meant, by the way, materials yeah, it's very big terminology, so I get this, yeah and at least they have Officially told me that, as long as I communicate to the TSA agent that these are assistive devices, that they are approved to go forward. So I have a piece of paper that says okay, which was progress. But I, I guarantee you, I do suspect that that would not have happened If I had not gone to channel 11 first. So to your point and your question earlier. You may not want to do these things, but sometimes that is the only way. Sometimes that is the only way. And if you are really shy, then you have to write people like me and Emily Lidow and Habin Germa and all these people who are. Let us talk about it if you want us to. You know, I want to hear from people what their stories are and share those. So it doesn't necessarily have to come from you, although I think it is better when it comes from you.
Speaker 1:I think that's a great point because you're absolutely right, there are so many advocates out there with those channels, with those connections tied to the media, who can, like you said, continue to collect these stories and show them as evidence to this systemic problem and this systemic need for accessibility, training across all forms of transportation, and I mean across every industry. It's just people don't know what to do and so they do nothing, and that is not an option anymore.
Speaker 4:Well, and here's the thing is that you don't even know who you're helping. It's not about you. And to your earlier point, I was the most stage frighten person you could imagine. I didn't want to do this. I was so terrified. But you know, when I realized it wasn't about me, that was when I had the courage and the strength again, because that people pleasing girl from age 15 could not bat them the idea of not being loved by everybody. But I realized I had to risk that in order to actually make any sort of change and I had to stop caring so much about what other people thought and caring more about what I could do to help others. And as long as I was focused on service, then it was something that we could really. You know, that's what gave me courage, strength and suddenly my fear of speaking went away, because it's not about me right, I love.
Speaker 1:I can totally relate. I think it's you know. It's like I never wanted to start a podcast. I don't like the sound of my own voice. Lady doesn't either. You have such a pretty voice though it's.
Speaker 3:Really I never listened to a single one of our episodes because I was so scared of those, because I don't like money, I know I don't. It's like being yourself on camera and you're like, ah and, by the way, it has nothing to do with Losa, it's just, literally, it's just I cringe, I mean.
Speaker 1:It's just the human brain. But I think to your point, it's when we step out of our own ego and our own kind of fear about how we're going to be judged and take it as this is something bigger than myself and I owe it to you know. I owe it to be of service in this world. I owe it to give my disability meaning and my experience meaning. I put it to work and open doors for other people. So I love the work that you're doing and we're going to put probably about 50 or 60 links in the show notes.
Speaker 3:Before we started like turned on the on button saying, oh, we might need to do a part two. So you're the perfect, like actually one of the only guests that we've had where I'm like I'm still left with many questions. Rarely happens. So we have a lot of experience, a lot to say. You're super interesting and we definitely need to have you back to talk more about this topic of advocacy and transportation, but also all the other stuff you have in your little vault of portfolio.
Speaker 3:Yeah, but I would be so happy, yeah. So we're going to put links to how people can reach you, because they certainly won't be able to spell your name. So definitely, but we'd like to end all of our podcast, sean, by we're getting really good at remind. Oh, too, I is asking you what does embrace it mean to you?
Speaker 4:Well, actually I was going to push back on what you said about people not wanting to do things, because to me, nobody can tell your story like you can, and that's why I would actually say that, if you're uncomfortable, lean into that, and that's part of embracing. It too is like okay, you don't have to be an extrovert to share your story, and I think you know. Going back to give beauty wings, my nonprofit, which is all about putting our beauty to action, is everybody has something to offer. I have the most gorgeous parents in the world and it made me so insecure because I was like, oh my God, they're so popular, they're so smart, they're so on top of it. How could I come out of her Like I look at my kids must?
Speaker 3:be. I can hear my kids saying the same thing right now. I mean, who says that about their parents? You are like a green child.
Speaker 4:I think my mom would beg to differ with you. I am a daddy.
Speaker 3:This part of this package, sending it to Will and Blake and I'm going to be like is this how you talk about me? Oh my. God, I'm sorry, but what I have to do is break. It means to you that people should tell their stories.
Speaker 4:I mean, I don't think telling your stories is the first step. I think embracing it allows you to be able to do that. But I think, for me, what I realized is that the beauty in me does not take away from the beauty in you, and vice versa. So the fact that my parents are gorgeous and so together and like I like to call them aliens because I don't I sometimes I don't think they're human, although they definitely you know, obviously have flaws, beautiful flaws. But what I realized is that just because they're beautiful doesn't make me or you or anyone else less beautiful. And so a lot of times we can look and this connects to your point that you could look at someone like Emily Liddown and say, well, I could never do what she does. Or you could look at someone like Jillian Mercado in a modeling campaign and say, well, I could never be a model like that. You don't have to be. That's the beauty.
Speaker 4:And embracing it means embracing what you bring to the table, and sometimes it takes some digging and self discovery to get to that nitty gritty. You know, I never realized I was a positive person. People always told me that and I didn't get it because I had, you know I had moments of depression, I've had breakups, I've had, you know, my heart broken, and so I didn't say, well, what's pop? But now I embrace that part of myself as one of the things. I am right, it doesn't have to be everything and you don't have to be defined by one thing, but embracing it is embracing all of it, the good, the bad, the ugly, and the beauty of the good, the bad and the ugly within it. And so give beauty wings and embrace it.
Speaker 4:I think I mean I'm that's why I'm so excited to work with you guys is all about putting what beauty we have to action. And if you don't know that your story can matter to someone else and you don't tell it. I mean, imagine if Whitney Houston just sang in her shower. You know what I mean. So let's not sing in the shower. Let's, let's, let's take the singing out of the shower. You know what I mean.
Speaker 1:I would have had nothing. I would have had no songs to lip sing to in the 80s if she stayed in the shower because she was my girl.
Speaker 4:Yeah, but we're not all and it's not. Someone could say, well, I don't sing as well, it doesn't matter, the point is that you're singing. The point is that there's music, that we all have music in our hearts and minds and something unique about us. No matter how many people we have with the same disability, not one person has the same experience. You could put two identical twins together they still don't have the same experience. So every story matters. That's what embracing it is for me.
Speaker 1:I love that.
Speaker 4:I can never answer quickly, you know I'm sorry, not sorry.
Speaker 3:I'm doing apologize. We love having you and we're going to have you again. But yeah, I mean honestly, it's like the most beautiful, perfect answer from the most positive person I think I've ever met. Actually, so like I'm just very excited so that when we are done with this podcast, I'm running and calling my children and voting you exactly. But, with that said, it was so great having you, meeting Sean with an X, and everyone else in the world needs to know you too, if they don't already. So we're going to make sure to have you again and to get the word out about what you're doing and who you are.
Speaker 4:Yes, and please, please, talking about sharing your stories. If you're not comfortable sharing it outwards, at least send me a message. I want to hear your story, so anyone that's listening. I'm so happy to connect with this community and we're here to uplift each other, and I would love to be here for every single person on this podcast listening right now and for you, ladies, so to be continued on our next podcast.
Speaker 1:Thank you so much, sean. Thank you, thank you everybody. Bye Stella, bye Sean, bye everyone, bye hey. Embracers. Thank you so much for listening and supporting the Embracers podcast brought to you by Launchpad 516 Studios executive, produced by George Andriopoulos and hosted by Laini Ispia and Stella Lugo. Our music and sound effects are licensed through Epidemic Sound Embrace. It is hosted with.
Speaker 3:Buzzsprout, do you have a disability related topic you'd love for us to feature, or could someone you know be a fabulous guest on our show? We would love to hear your comments and feature them on our next podcast. So leave us a voicemail, or you can even send us a text to 631-517-0011.
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