March 21, 2024 • 59 mins
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.
Embrace It is produced by Launchpad 516 Studios.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 2 (00:03):
Welcome to the Embrace it series, where women
with all types of disabilitiescan be real, resourceful and
stylish.
With each episode, you'll walkor roll away with everyday tips,
life hacks and success storiesfrom community leaders and
influencers.
So take off your leg braces andstay a while with Lainey and
Estella.
Speaker 1 (00:26):
Hi, I'm Lainey and I have CMT.
I'm a neuro-muscular disorderaffecting approximately 2.6
million people worldwide.
Speaker 3 (00:37):
That's as many as MS.
We believe disabilities shouldnever get in the way of looking
or feeling good.
Both of us wear leg braces andhave learned through our own
personal journeys to embrace itBrought to you by Launchpad 516
Studios.
Speaker 1 (00:52):
each episode is designed to challenge your own
stigmas and beliefs arounddisability.
We want our listeners to getthe most value for their time
spent with us, so we interviewsome of the most empowering
disability badasses in the world.
Through storytelling, personalexperiences and tips, we're all
reminded of our own strengthsand endless potential.
Speaker 3 (01:09):
For more information and exclusive resources, check
out our websites attrend-ablecom and hnf-curorg,
and don't forget to hit thesubscribe button for future
episodes and special promos.
Speaker 1 (01:30):
Welcome everyone to another episode of the Embraced
Podcast.
Hey Lainey, hey Estella, thisnext guest.
Her name is Sean Horn and sheis a public figure.
She's a humanist, a beauty anddisability advocate, a Forbes
contributor, teacher, achocolate, caffeine and also a
(01:53):
ski pole aficionado.
Welcome, sean.
Speaker 4 (01:57):
Oh, thank you so much for having me, and you know,
there's Instagram bios cominghandy.
I'll tell you yes.
Speaker 3 (02:05):
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 youspell your name.
So what is?
How do you say it?
And I'm trying like cause an Xis very hard to play.
I don't even know how you do.
Oh, no, I get it.
Speaker 4 (02:24):
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 (02:34):
Such a cool name, sean, so welcome, and you're all
over the place.
I mean, estella was like lookat this woman, she is moving up,
she's everywhere.
We recently, like actually metyou in person at the runway of
dreams fashion show in New Yorkand, um, I took a picture with
you and you now are like who isthis?
(02:55):
You're probably like who isthis person in the picture,
Cause I don't think I've gotwords to each other.
Estella was like Laney, get inthe picture.
Speaker 4 (03:04):
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 (03:15):
Perfect.
Speaker 4 (03:16):
So, yeah, not at all, but no, I mean, uh, back to the
name for a second.
I mean I think this goes backto the Embrace it theme, which
is, you know, traversing theworld.
A little background about metraversing the world with two
shiny ski poles with an X inyour name.
Um, you know, it's, it's as if,you know, I was meant to stand
(03:39):
out in some way and I think weall are, you know, maybe less,
not everybody's as obvious.
Um, you know, but there wassomething to to growing up, you
know, in a very visible way or avery apparent way, um, to most
of the world, especially in NewYork city, um, where I'm, I was
born and raised and where I'mactually podcasting with you
(04:01):
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 willstart conversations with you.
How do I say that?
And so, as I've made a lot offriends because people can't
pronounce my name, so there aresome perks I and I, actually, I
(04:23):
always joke with my friend Brian, who also has cerebral palsy,
that we're going to start apodcast called cerebral perxy
about all the perks I love thatthat is like a fantastic name
and you buy away for the record.
Speaker 3 (04:37):
You have me beat and so the name is.
Even though it is said exactlyhow it looks, it is often
confused.
But Sean, with an X, trump'sLaney.
Speaker 4 (04:49):
As you know.
All right, I like confusingpeople.
For the record too, you knowpeople.
People won't forget you.
Speaker 1 (04:57):
Exactly Well.
You're definitely unforgettableand we would love to hear you
know you mentioned you have CP,cerebral palsy.
You can take us back and justgive us a little bit of an
overview on how growing up witha disability with a unique name
in New York City how you youknow how you're upbringing kind
(05:19):
of impacted the wonderful workthat you're doing today.
Speaker 4 (05:23):
Yeah Well, anyone who's heard my story before
knows that I have to start withmy parents.
So it was great to give datashout out right from the
beginning.
But you know, I think a lot ofwhat informs my reality and how
I see the world is the fact thatI had artist parents who taught
me anything was possible.
I mean they were always.
(05:44):
You know, my mom ran her owndepartment and said Estee Lauder
and Avon.
My dad had his own law firm.
They treated me like a futureleader and, being an only child,
I got all the love and now Isay it's my duty to give that
love back Right.
And when we're talking aboutprivilege, I've been privileged
(06:04):
in love and so I always sayprivilege itself is not a
villain, it's what you do withit or don't do with it.
So if you're not using yourprivilege to make space for
somebody else, that's whenprivilege is a problem or when
you're using it to staywillfully ignorant.
But you know, I think all of uscan be allies to each other and
(06:25):
that you know a lot of times asdisability advocates, I'm sure
you guys see this all the timethat you know people assume you
know about all disabilities andI think, as a, as a true
advocate, what we need to do isbe hearing from our friends and
listening and taking in theirstories and and making sure that
(06:46):
, when it's not our experiencethat we're saying, have you
talked to this person who has alived experience of X so that
we're making sure that, yeah, weshouldn't be representing all
disabilities?
You know, I do believe, youknow, my work is even bigger
than disability in the sensethat I think it's about our
humanity and the oneness ofhumanity, but celebrating the
(07:09):
differences in the inside ofthat oneness.
Right, because we all, you know, we all have something
different to offer, even if wehave the same disabilities.
Not one person has the sameexact story.
Speaker 3 (07:23):
Yeah, exactly, which is why cerebral palsy is
different for everyone.
Speaker 1 (07:27):
right, we've had another guest on the power power
carousel yeah.
Speaker 3 (07:32):
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 justknow from our own experience.
So can you give us just alittle glimpse before we start
talking about the stuff that wereally want to talk to you about
, which everyone is listening.
you guys hold on, because we'vegot some great tips and tricks
(07:54):
for you for living withdisabilities, but give us a
little intro of your story, likethe you know, how did you know
you had CP and what was yourlife like?
Speaker 4 (08:06):
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 wasa doctor since the 40s and she
knew, she knew that certainmilestones were supposed to be
happening at a certain age and Iwasn't sitting up and so they
(08:27):
took me to the doctor everymonth for about six months and
it wasn't until my 12 month.
You know, checkup that theysaid okay, she's got.
You know, mild cerebral palsy.
You know my parents didn't eventell me what type of cerebral
palsy I had.
I had no idea that there wasall different types of cerebral
palsy either.
(08:48):
They just told me it was mild.
And I'm not sure, you know thatmight have been exactly what
the doctor told them at the time.
But you know my parents said nofor good or bad.
They said no to griefcounseling and my dad said we're
just going, she's a happy kid,we're just going to keep raising
her this way.
And you know, as soon as I couldget in, I mean, he had me on a
(09:10):
surfboard at six months.
You know I was always yeah, mydad's an athlete, so you know
he's pretty active, so he taughtme to swim, you know, when I
was five, and stuff like that.
So I mean, I think what I feltas an only child was that I was
more because I was different.
They really gave me a sensethat I could do anything as soon
(09:33):
as I could speak.
They were asking me what areyou dreaming about?
How can we support you?
And I realize now what a luxuryand what a gift.
That was A lot of times in theself-esteem work that I do,
which we will get to, you know.
I remember once asking thegirls to write about their day
(09:53):
and one of the girls said to mewow, it's so great to write
about my day.
Nobody's ever asked me how myday was before.
And that really opened my eyes.
And this is why my first Forbesarticle was called as
leadership of luxury, because Irealized that if you're not sure
your kid's gonna make itthrough surgery next week, you
might not be talking to themabout what they're doing in 10
years.
(10:13):
And if you live in a dangerousneighborhood and you're just
hoping your kid makes it homesafe, you might not be talking
to them about what they're doingin 10 years.
You're thinking about the next10 minutes.
So this is not to judge howanyone else was raised or how
other parents do it, but Irealized that in a lot of ways
what made me want to advocate?
(10:35):
I always thought that theadvocacy I saw seemed very angry
and very and there's a lot tobe angry about.
I wanna be clear that I thinkthere's space for every kind of
voice in our community, but Ijust didn't resonate with me
because I had a very bubble-likeexperience of I get to see the
(10:59):
kindest side of New Yorkerswalking with two ski poles every
day.
I wouldn't be able to go half ablock without somebody opening
a door for me or offering orstarting a conversation of some
kind.
So for me I was very consciousof what and the people that it
brought into my life and I knowthat that's not everybody's
(11:21):
experience.
In fact I know that that's arare experience of disability
and I joke I say that myexperience of disability and not
that I've ever been pregnant,but it's kind of like being
perpetually pregnant in the waythat people treat you.
I have lots of strangers.
Let's say it's raining.
Oh, be careful, or we'll giveup a seat, not in the subway.
(11:46):
Somehow all chivalry disappearswhen you're in the subway.
It's a tie, yeah, or in TimesSquare for some reason.
But everyone outside of TimesSquare in the subway are
generally incredibly kind.
In fact, I almost overly so.
But because of that, I'vereceived so much kindness, even
(12:06):
from strangers, not just myparents that I feel it is my
duty to give that back.
And also, with the self-esteemwork that I do, it really came
out of the fact that it reallydid not sit well with me that
anyone would feel like lessbecause of their disability or
because they're a woman or anyway that they feel different or
(12:28):
outside.
So the self-esteem work I doisn't just for the disability
community, it's for humanity.
I hope to see that everyonecelebrates their beauty in equal
measure.
So that was really the path Iwas on and I was very content
doing that at NYU.
And then I got asked to judgean assistive technology
(12:51):
competition through AT&T.
I knew nothing about assistivetechnology.
I made that very clear to themand I think you can relate to
this, having lived experience ofdisability.
When your expertise is yourlived experience, boy, it opens
up your world.
So I'm not a technologist and Iended up doing this and then
(13:11):
being asked to speak on film,even though I'm not a filmmaker
for real abilities and thenjoining their film selection
committee and then realizingrepresentation was so important.
Not just let me back up alittle.
Before I even did myself withSTEAM classes, I also pitched
the Dove campaign asking them toinclude people with
(13:32):
disabilities in theiradvertising.
Speaker 3 (13:35):
And the reason for that was A cause for that,
because I think that is so likeI read that about you and your
story.
I watched that, yeah, yeah,okay.
So I mean tell us about thatspecifically, the campaign and
what you did and how old wereyou, and yeah, well, you know
the thing is, it's so funny.
Speaker 4 (13:53):
Everybody always wanted to make me a poster trial
for something and I reallyresisted it because I thought
this is the obvious thing to do.
I already call enough attentionto myself on these New York
City streets.
Last thing I need to do is theobvious, and I think what
happened for me was my secondjob ever in New York was for a
(14:14):
theater that had 45 memberstotal, 15 with disabilities, and
they were actors, studio actors, kennedy Center, award-winning
playwrights writing in theirjournals about suicide attempts,
about body image, aboutdisability, identity, and there
was a lot of dysmorphia there.
And I looked in front of me andI saw the most gorgeous,
(14:37):
charming, beloved people thatI'd ever met and I thought, if
this is how they're doing and Ilook up to them, how's everyone
else doing?
And I wondered why is it that?
I know it sounds strange, but Ididn't to your question earlier
.
I didn't even really, eventhough I knew I had cerebral
(14:57):
palsy from as soon as I couldremember, I never realized I was
that different.
Like I think there is somethinggenerational where I think used
to be at least 20 plus yearsago, when anyone that was
growing up, and 100 years ago,anyone that was growing up
(15:19):
different had to adjust to theirenvironment and be scrappy.
I think in the last 10 to 15years, with social media and our
awareness of so many differentcommunities, now there's an
attitude of I'm here, you'resupposed to accommodate me, but
I think that that is relativelynew.
But I think the positive partof that is I genuinely did not.
(15:43):
I knew I was different, but Igenuinely, outside of the
obvious, the ski poles thoughtI'm just like everybody else.
And I remember being nine yearsold walking through my lobby
where we had a floor to ceilinglength mirror my entire life and
I only then looked in themirror and saw my left knee went
(16:04):
in a little bit as I was skiingpast and I was like, wait a
minute, it never occurred to me.
I thought I walked just likeeveryone else, just with poles
too.
And when I saw my knee go in Iwas like, oh, I am different,
like I do walk differently.
That's how much of a bubble.
And you could say it'sdelusional.
(16:25):
You could say many things, buthonestly I think in a lot of
ways there was a lot of benefitto really not feeling that
different.
I knew I was different, john.
Speaker 3 (16:35):
It's already so interesting to me.
I mean, one of your parents isAsian, one of your parents is
Jewish I'm also Jewish, by theway so that alone is like makes
you different, right?
But yet you're talking aboutyour disability.
You have so many things thatmake you unique all of us do but
yours are very visible.
Okay, we have to go back to thedub campaign.
(16:58):
You have to tell us about that.
But also, what are ski poles?
Like people who are listeningand don't know.
Speaker 4 (17:04):
And it kind of feeds into when we talk about travel
later.
It'll feed into that too.
But no, but I promise I wasgetting there.
My point was, my point was thatI really was confused as to why
I was the only one here feelinglike my disability was an asset
and for many years it felt likethat was the easy part of my
(17:29):
life.
I cut the lines of Disney World, the airport, et cetera, and I
thought and it was actually Imean, I know it sounds actually
kind of like I must have beenunder 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.
(17:51):
So, going back to the dubcampaign, the reason that I was
thinking about this is, again, Isaw my friends struggling and I
said, okay, I think it'sprobably because they didn't
have control over who theirparents were or if they went to
the right schools, which all ofthat.
My parents really did theirresearch.
I went to UCP, united cerebralpalsy, which meant that in
(18:14):
preschool I went to school withkids who were just like me.
We were all different, but evenwhen I was mainstreamed quote
unquote later on being the onlygirl with ski poles, or the only
girl with cerebral palsy in myclass, even though there was
another.
There was one other girl whohappened to be, by the way,
(18:35):
asian and had CP also, so Ithink that helped too.
We were, you know, andrepresentation yeah.
I mean the fact that the oneother person was, in a way,
we're very different but alsohaving similar backgrounds.
So she was one of my bestfriends, but they made sure to
put one of us in each class sothat I don't know for our
(18:59):
individuality, for ourdevelopment, like.
But even when I was insituations where I was the only,
you know, visibly disabledperson, I never felt alone and I
never.
And because I didn't feel thatdifferent, I'm like well, no, I
belong here, and so it's gonnasound very strange.
(19:21):
You know, I was very popular inelementary school, I was very
popular in junior high, and itwas 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 lovedeverybody and so this idea that
I couldn't be loved back wasreally disturbing to me.
(19:43):
But I, when I look at that, ina way, I bullied myself, I think
, and people responded to how Ifelt about it in kind.
So, going back to Dove for asecond, so I what happened for
me was that I really started tothink about how come?
Yeah, I think I just wanted totalk about the high school part
(20:06):
because I don't want people tothink that I just never had
self-doubt or I never wasinsecure, because I was,
incredibly, because I waslooking at validation through
other people, which is where Ihad gotten it before, and it
stopped working for me and Irealized that that's not enough
right.
We can't base ourselves overhow much we're liked or disliked
(20:28):
.
But going back to Dove for asecond, you know, when I
realized that you don't havecontrol over what schools you go
to, what kind of supportsystems you have, I said where
else do we get our sense ofself-esteem?
And you could answer a lot ofthings like media in general.
But I think the answer that cameat the time was the beauty
(20:49):
industry, and Dove had alreadydone beautifully inclusive
things for, you know, women ofall sizes and older women, and
so, to me, including people withdisabilities and their campaign
was not only the next step, butknowing how my friends were
doing it was incredibly criticalto their survival, in my
(21:09):
opinion.
So I didn't really, you know, Ihad no experience.
I had no advocacy experience atall, but all I knew was that if
I didn't do it, who would?
So I filmed a minute and 23second video in my mother's
(21:30):
living room with a friend fromchurch who did it for free.
We had zero budget.
If you saw how messy that roomactually was outside of the room
I have some behind this and Ialways laugh and I see the
behind the scenes photos becauseI think they're like what?
But anyway, and I made it forone person, I didn't say I mean,
(21:52):
this was the early days ofYouTube and it didn't even occur
to me this idea of going viral.
You know, I made it for oneperson that apparently no longer
worked at Dove, which heshortly told me.
But my cousin saw the video andshe said you know you already
made the video, why don't youjust share it on Facebook?
(22:13):
And so I did.
And I sent it to a few Facebookgroups that had some themes
connected to the video in it andmy last line was oh, I forget
the line now, but the wordpositive, the word positive was
in it.
So I sent it to a group calledPositively Positive and they
(22:36):
posted it on their group andthat video got, I think, 16,000
views in four days and that'snot a lot.
I mean, it's not Justin Bieberviral.
But I got letters from thePhilippines.
I got letters from Australia aman with AIDS for 30 years
saying you know what it meant tohim a woman with rheumatoid
(22:59):
arthritis.
And I have to say, in thatmoment I realized how small.
I was looking at disability.
I was really thinking aboutmobility disabilities when I
made that video, as most peopledo.
And I will tell you, the videowas not captioned, the video was
not audio described, Because Ididn't even know about those
things at the time.
(23:21):
How did Dove get it?
Well, guess what?
They got it from two differentI knew two different sources
showed them the video that theyalready 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 neverheard from them again.
I never heard how Dove feltabout it.
(23:43):
I never got a response fromDove directly.
It just died on the vine and Iactually think in a way, it was
meant to be, Because I thinkwhen I first started this, Dove
was the end-all-be-all and whenthey said no, I realized, wow,
this is so much bigger than onebeauty company.
(24:03):
And the fact that the majorityof people actually supporting
the video had no disabilities atall meant there was something
more universal that people weregetting.
And in a way, it was a gift tome that Dove said no at that
time, Because I think I couldhave just gotten very focused on
that one thing.
It could have been a shootingstar in the sky and then gone,
(24:28):
but because it didn't happen andother things happened, like
being handed classes at NYUhaving never taught a day in my
life, by the way so it opened myworld in a way that was
unexpected, and it did not go,and this is why I'm always
telling you there's no suchthing as failure.
If you're still here, youhaven't failed, and I was a
(24:53):
telemarketer in my previous life, so you really have a thick
skin for rejection.
Well, I was going to say when nois 98% of your day.
You're not so afraid of itanymore Because yeah and yes
means so much more when that'syour reality as well.
Speaker 1 (25:10):
So We'll be right back.
This is George, fred and Jason,the co-leaders of Speak.
Speaker 6 (25:17):
Interrupting to say that we hope you're enjoying
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New episodes available everyweek on all of your favorite
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And you can find the podcast onthe website.
And you can find the podcast onthe website.
(25:40):
All of your favorite podcastplatforms.
Speaker 5 (25:43):
Each Speak Talk is about six to 10 minutes in
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There are three key moments ineach Speak Talk the moment of
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We host pop-up events all overthe world, and now we're
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Join us on the Speak Podcast as our speakers step
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Speaker 1 (26:23):
You're tuning in to embrace it with Laini Anastella,
brought to you by Launchpad 516Studios.
You know I love your passionand obviously it's not just the
beauty industry that you've putthat passion to work for.
You are a Forbes contributingwriter and you've been featured
(26:43):
on the White House blog and Ithink in some of our previous
conversations you really seemlike someone who just can see
and identify a problem and thenlook for solutions and put your
energy towards what's needed atthat moment.
Is that accurate?
Speaker 4 (27:05):
I mean.
I think that I mean when peoplecome to me and ask, in fact,
someone did that they're in oneparticular area and they wanted
to break out.
And I said, well, where do yousee the need areas?
Because that's where you needto go.
And even when I started withthe self-esteem, I was content
doing that and then I realized,wait, there's assistive tech,
there's adaptive fashion.
(27:26):
And then I have to say, on apositive note, that the beauty
industry finally, within thelast two years, has gotten the
memo and they're playing catchup and doing it fast.
So there is hope.
It didn't happen in the momentthat I wanted it and didn't
happen with Dove, but even Dovehas improved Eventually, yeah.
(27:47):
Yeah, I mean I think they couldbe doing more, but I'm glad
that they're doing anything.
To be honest, and you know whatI mean, that was more than 10
years ago.
So leadership changes andattitudes change and I think
that, honestly, there is a waveof change.
I've always said that I thoughtdisability inclusion was
(28:08):
inevitable, but that doesn'tmean we can't be a catalyst for
it.
Speaker 3 (28:12):
Yeah, so speaking of things that you, when you see
the need, as Estella said, youmake things happen, you find
solutions.
So there's so many things thatyou are knowledge about in the
world and we're going to include, for sure, info for everybody
who's listening on yourself-esteem workshops and your
(28:33):
articles and forum and all thestuff that you're doing.
But can you talk about the needwhen it comes to transportation
for people with disabilitiesand what you and how that came
about for you and what you'redoing about it?
Speaker 4 (28:47):
Yeah, and speaking of the need, I mean I wasn't
planning on being atransportation advocate, I can
tell you that much.
But after 22 years onAccessoride, when you have to
wait two hours or you get leftbehind or you're five hours on
the same vehicle because you'redropping off so many people on
(29:07):
all boroughs, I mean I wentthrough so many things that I
actually, when I say 22 years, Itook a five-year break because
of how stressful it was when Iwas in college.
No, because if you're only homefor the break and you only,
have, let's say, a week and ahalf with your family, you don't
have two hours to wait everysingle day.
And I just said you know whatfor my mental health, I've got
(29:31):
to just and keep in mind I wason Accessoride even before GPS,
so it was even worse, whichseems almost unfathomable for
people.
But even so, I think it wasn'tuntil I was left by an Uber in I
(29:51):
think it was it 2019?
I have to look.
I was left by an Uber, my bestfriend and I my best friend's on
she's on a walker and we wereleaving my uncle's house in
Naples, florida, and this guyhad come 15 minutes out of the
(30:13):
way to go to this gatedcommunity that we were in, took
one look at us and backed out ofthe driveway.
My uncle said where are yougoing?
He just said I canceled theride and I had been passed by
cab drivers before, and alwaysmy attitude was if they don't
want me, I don't want them.
But this is different.
This person had my name.
(30:33):
They came all this way out andstill bailed, but my first
thought was he did not speakback to my uncle.
I really felt that in this case,this guy just had no clue what
to do with two of us, and so Icalled Uber and I said listen, I
don't want this guy fired, Iwant him trained, because I'm
(30:56):
sure he has a family.
And it was pretty clear he wasnot from the United States.
I was actually looking forwardto 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'sanother part of my New York
experience.
You know cab drivers, doorman,they're all my best friends.
You know they're the guys thathelped me the most.
(31:18):
So I, you know I've alwaystried to return the favor in
some way, and we have.
Speaker 3 (31:23):
I have the greatest conversations and taxis and
ubers, so okay you are solikable and I totally I'm sure
that you have besties all overNew York City and wherever
because you're super likable andobviously bubbly but you
(31:44):
couldn't have been just standingthere.
That Uber the nice guy who yousaw in the picture with you know
that you wanted to talk to.
He pulled away.
I mean, like were you pissed?
Speaker 4 (31:55):
I mean oh well, first of all, I was.
I was shocked.
Oh, and my uncle?
You know, the reason I actuallydidn't get pissed is that my
uncle was so upset that I wasbusy calming him down.
I said, listen, you know,because my again, my, my thought
is I don't want anyone whodoesn't want me, so let him go,
(32:16):
you know.
But at the same time, I wasthinking about the bigger
picture and I realized this Imust not have been the first
person and in fact, if you readthat article, what I did was I
collected up all the experiencesthat I could from my friends on
Facebook and elsewhere, youknow, because I was shocked that
when how not shocked everybodywas.
(32:38):
And somebody I know, for exampleHabingerma, wrote about the
fact that she was left by threeUbers in one night in New York
City because of her service dog.
I've since learned that alsowhen you have a service dog,
that that a lot of times it'salso within the Islamic religion
(33:00):
that they don't want dogs intheir car.
There's a religious reasonbehind that.
Now, I don't know exactly why,but so it's so, anyway, what
I've learned time and time againwhether it was the dove pitch
or assistive tech or fashionthat there's.
So every time that you have anissue, there's a hundred
(33:21):
thousand people behind you thathave the same issue, that have
not had a chance to share theirstory.
And so, you know, when this Uberthing happened, I wanted to
make sure that I wasn't justsharing a kind of crappy thing
that happened to me and my bestfriend, but really talking about
what is the larger issue here.
And my shock was not the factthat this happened, because of
(33:45):
course, I've been left by cabs,you know, passing by before, but
it was more Uber's lack ofresponse and their refusal.
They actually told me we cannottrain them because we don't
recognize them as employees, andso it became more of an issue
of what is the larger problemhere that we're not addressing,
(34:10):
you know, and it's not just Uber, it's, I think, many different
forms of transportation and yeahso no.
So that was the beginning ofthat.
And then you know there's anincredible program that I was a
part of.
The good news, you know, andit's also kind of bad news
(34:32):
because they're trying to cut it, but the Accessoride, in
response to their horribleservice, created a pilot program
where they allowed 1200 of usto travel same day, by the way,
if you're on traditionalparatransit, you do not have
same day options.
So this was revolutionary.
You call a car.
Speaker 3 (34:53):
They call us non-New Yorkers.
What is paratransit mean, LikeI don't even know.
Speaker 1 (34:59):
Even access accessoride as well, in case
people don't use that.
Speaker 4 (35:03):
Yeah, accessoride is the New York City name,
paratransit is the national namefor, basically, you know,
there's many parts of Americathat are not ADA compliant,
especially New York with oursubway system, and so
accessoride and paratransitnationally were created to, you
know, address that gap and tofail safe the fact that they're,
(35:27):
you know, not legally, you know, ada compliant.
So, anyway, so the way thatparatransit works in New York
City, you have to book one totwo days in advance, before 5 pm
.
You need exact times, exactlocations.
That cannot change.
There's no such thing as a lastminute emergency.
(35:49):
You also can't guarantee, youknow, if you pick someone up and
it takes two hours to get themto their location.
So even if you have a pickuptime and, let's say, you get
stuck in traffic anyway, you'rekind of SOL.
So so I mean the traditionalsystem.
(36:11):
I mean I think anyone that'stelling you it's good probably
works for accessoride, becauseeverybody else knows that their
nickname is stressoride for areason.
Yeah and so.
So they create.
But here was the good news theycreated a program which used an
Uber like app.
In fact, now they only recentlyallowed us to use Uber apps.
(36:36):
You could use an Uber like appcalled Arrow for taxis or curb
at one point was part of it andyou could book a car within
minutes.
It was unlimited and availableto us, and it was still, on
average, cheaper.
Those blue and white vans yousee in New York, which are the
(36:57):
traditional accessoride vans,cost $150 per person per ride to
operate and so, even beingunlimited, it was an average of
$47 per person per ride for theother vehicles which would show
up on time or close to it.
And so you know it was honestly.
(37:19):
New York is the greatest city inthe world.
It makes sense to me.
I'm sorry I'm biased Ifanywhere else I'm biased, I'm
biased, but I mean we have thelargest transportation system in
the world here, and so youcannot compare it to other
cities.
I hear this comparison all thetime.
The truth is is that there's areason we call it a New York
(37:41):
minute and I do take Umbridge tothe fact that our New York
minutes seem to count less thanothers and this program really
was the antidote to that, andthey are now constantly trying
to cut it and tell people it'sterrible and that it actually
doesn't work, which I'm sorry.
(38:02):
I'm here to be the bearer oftruth, which is, you know the
cheapest option, which is alsothe most efficient to me, should
be not only not cut, butexpanded the standard, yeah,
yeah, so that was another, butI'm saying all this to say that
ended up becoming another areaof advocacy and I got over.
(38:24):
And if you guys want to sign thepetition, it's still active.
Yes, please, we'll share it aswell.
We have 8100 signaturessupporting, you know, not
cutting this program, but for me, even beyond this particular
program, my question is ifyou're not requiring everybody
to travel by bus or subway uh,one to two days in advance.
(38:46):
Imagine if you had to book yoursubway rides one to two days in
advance.
If you're not requiring that ofeveryone, then why are you
requiring it of us?
Speaker 3 (38:54):
Absolutely Right.
But on the Uber app now it isum, like the Uber and Lyft app
isn't there a way for people toindicate that they have
accessibility and that they wantan accessible vehicle?
Absolutely.
So how do they if, like, peopledon't know that that are
listening, like they just go onthe app and that's where they're
going?
Speaker 4 (39:14):
Well, you can look for what's called a WAV or wave
vehicle.
It stands for wheelchairaccessible vehicle.
Um, you know, I, um, I don'tknow if there's like a way to
say I am disabled, but you havethe comments section where you
can do that, but there'scertainly they do mark, uh,
wheelchair accessible vehicles.
(39:35):
It's usually at the very endwhen you're scrolling down.
Um, and I have.
I'm happy to report that overNew Year's, the wheelchair
accessible vehicle I took withmy first grade best friend, the
one I was telling you about, theother Asian girl with CP, um,
we, we took it to my second andfourth grade best friend's house
(39:55):
and um, and it was less, it wascheaper than the regular
vehicle.
Speaker 1 (40:01):
So nice.
So win, win for, for, for yourfriends, and I think I will
definitely share the um, thepetition and get more support
for that.
But what happens when it's amore personal interaction and
I'm sure there's been timeswhere you have had to really
(40:23):
advocate for yourself, whetherthat's in a vehicle or other
modes of transportation Can youspeak a little bit to that and,
I think, maybe provide any tipsor you know, things that people
can do to to make thoseexperiences less stressful?
Speaker 4 (40:40):
Yeah.
So for those listening to me,you might be saying well, she's
a Forbes contributor, um, youknow, I've worked with the
mayor's office for people withdisabilities.
I will acknowledge that this ispart of why I have used my
voice.
Beyond this is that I realize Ihave platforms, and I have
wonderful people in my life, um,who are responsive and in
(41:02):
positions to help me.
So I think, though, even if youdon't have that the wonderful
thing, going back to my pointabout social media earlier, I
think we now, whether you have,have perceived whether you feel
empowered or not.
Anyone can start a YouTubechannel.
(41:22):
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 anyonecan, you know, use what?
What's out there, and I mean wesee Everyday people going viral
(41:45):
, all the time for reasons,because people are passionate
about whatever they're talkingabout and supporting it.
So, so you don't have to beSomeone with, or you could start
a podcast, like you guys did,but there's so many ways for
everyday people To, no matterwhere you come from.
(42:06):
If you have the internet, youhave now a platform.
It used to be, you know, 50years ago, of ABC, nbc or CBS
didn't cover it.
You didn't.
You know what I mean.
It just it was.
Speaker 3 (42:21):
Right, like the everyday person who's listening.
Not everyone wants to do such abig thing.
They don't necessarily want tobe, you know, a spokesperson and
, and, you know, create aYouTube channel or make a big
thing there.
I get a lot of emails forpeople like what do I do at the
TSA line?
I don't have, they don't havewhat I have, what do you call it
(42:50):
?
And get through faster likethey.
They wear braces on their leg.
They're worried that they'regonna go off, that they have to
show them that they have to takeoff their shoes.
They're uncomfortable and they,let's say, they feel like very,
you know, uncomfortable ingeneral and they have a bad
experience with the TSA officer.
Like they don't go.
(43:11):
I need to.
What do they do on an immediatelevel and in the moment and
then afterwards?
You any thoughts?
Speaker 4 (43:18):
Well, I think there's a few layers to this question,
so I'm gonna try to answer eachlayer, which is, first, I think,
it's getting comfortable withwhat it is you know about
yourself and you need, becausethe truth is a lot of us with
disabilities, let's face.
It wants to assume that peopleare mind readers and know
exactly how to treat us theminute they see us, which which
(43:39):
would be great in a utopianworld, but the truth is that,
yeah, I think some of it ispracticing.
How do you express exactly whatit is you need and if there's
going to be something where youalready Anticipate there might
be issues, or you've had issuesin the past.
You know getting something likea doctor's note, or Getting you
(44:01):
know if you're not good atexplaining it, you know, you
know, maybe finding, first ofall, I do think, for those who
can, you know practicing thatand having it come from you is
is Important, but let's say,someone is nonverbal or what
have you?
You know, either havingsomething written out or someone
(44:21):
who can.
Yeah, and I will tell you,though I do think that you know
we obviously want to advocatefor as much independence as
possible, but the truth is isthat every person on this planet
needs help, and there are goingto be times where you know If
you can't do it, you're going tolike if I don't ask for help at
(44:42):
the buffet line, I will not eat.
Because I walk with two poles,my hands are occupied.
There's no way I can carry thatplate.
And so I, you know.
And if there's, you know, I canuse stairs from time to time.
There are times where the onlyway up is a couple of stairs and
I need to ask a completestranger for help up those
stairs.
Now, I know that a lot ofpeople don't have that option.
(45:05):
I I want to acknowledge that,but I think being able to be
comfortable with what you knowabout 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?
You know, this woman looked atmy adapted ski poles, which are
(45:28):
my assistive devices that I'vebeen using forever, and For the
first time in 30 years, I triedto separate me from them, which
is actually goes against thepassengers bill of rights For
people with disabilities,because you're not supposed to
separate Anyone, under anycircumstance, from their
assistive devices and when Isaid these are the only
(45:51):
assistive devices I can use, shesaid, no, you made these this
way and like she didn't.
Just my issue and the reasonwhy I said something is, you
know, if this was the policywhich 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
(46:14):
or polite way to express it,but she genuinely treated me
like I was bringing AK-47s ontothis flight and yeah, and.
So If anyone wants to hear thewhole story of that since I know
we don't have much time leftyou can listen to the women's
(46:35):
e-news podcast that I did, whereI detail everything that
happened there.
But I think for me, what ithighlighted was, you know, this
whole experience and how peoplewere so kind to me afterwards
and shared their own stories.
I realized that again, it comesdown to this training thing and
you know, in case you want toknow, there, it was very
(46:58):
confusing.
After the fact, when I did filethis complaint, I got a form
letter that basically told me itcould happen again because my
ski poles were adapted andBecause ski poles are
traditionally sharp, which, bythe way, the ends of my ski
poles are no sharper than a pen.
I checked and so pens areallowed on the plane.
(47:20):
So I definitely did not agreewith that assessment.
And then, about a week later, Igot another letter saying that
my ski poles were okay.
And this again talks aboutsometimes these institutions are
almost too big for their owngood.
And so I was getting ready witha lawyer's letter and all this
stuff when this other lettercame through and they did inform
(47:44):
me that they were sending.
The previous letter said in youknow, aggressive cases we will
train, but did not give me anyinsight 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 Idon't want to ruin anybody's
life, but I just want to makesure that this doesn't happen to
(48:07):
any of my brothers and sistersand family with disabilities.
So that was really my concernreally in doing this.
And so I got this other letterwhere they basically said that
materials were sent to themanagement at JFK.
I still didn't know what thatmeant, by the way, materials
yeah, it's very big terminology,so I get this, yeah and at
(48:29):
least they have Officially toldme that, as long as I
communicate to the TSA agentthat these are assistive devices
, that they are approved to goforward.
So I have a piece of paper thatsays okay, which was progress.
But I, I guarantee you, I dosuspect that that would not have
happened If I had not gone tochannel 11 first.
(48:51):
So to your point and yourquestion earlier.
You may not want to do thesethings, but sometimes that is
the only way.
Sometimes that is the only way.
And if you are really shy, thenyou have to write people like
me and Emily Lidow and HabinGerma and all these people who
(49:14):
are.
Let us talk about it if youwant us to.
You know, I want to hear frompeople what their stories are
and share those.
So it doesn't necessarily haveto come from you, although I
think it is better when it comesfrom you.
Speaker 1 (49:28):
I think that's a great point because you're
absolutely right, there are somany advocates out there with
those channels, with thoseconnections tied to the media,
who can, like you said, continueto collect these stories and
show them as evidence to thissystemic problem and this
(49:49):
systemic need for accessibility,training across all forms of
transportation, and I meanacross every industry.
It's just people don't knowwhat to do and so they do
nothing, and that is not anoption anymore.
Speaker 4 (50:07):
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, Iwas the most stage frighten
person you could imagine.
I didn't want to do this.
I was so terrified.
But you know, when I realizedit wasn't about me, that was
when I had the courage and thestrength again, because that
(50:29):
people pleasing girl from age 15could not bat them the idea of
not being loved by everybody.
But I realized I had to riskthat in order to actually make
any sort of change and I had tostop caring so much about what
other people thought and caringmore about what I could do to
(50:52):
help others.
And as long as I was focused onservice, then it was something
that we could really.
You know, that's what gave mecourage, strength and suddenly
my fear of speaking went away,because it's not about me right,
I love.
Speaker 1 (51:07):
I can totally relate.
I think it's you know.
It's like I never wanted tostart a podcast.
I don't like the sound of myown voice.
Lady doesn't either.
You have such a pretty voicethough it's.
Speaker 3 (51:19):
Really I never listened to a single one of our
episodes because I was so scaredof those, because I don't like
money, I know I don't.
It's like being yourself oncamera and you're like, ah and,
by the way, it has nothing to dowith Losa, it's just, literally
, it's just I cringe, I mean.
Speaker 1 (51:35):
It's just the human brain.
But I think to your point, it'swhen we step out of our own ego
and our own kind of fear abouthow we're going to be judged and
take it as this is somethingbigger than myself and I owe it
to you know.
I owe it to be of service inthis world.
(51:55):
I owe it to give my disabilitymeaning and my experience
meaning.
I put it to work and open doorsfor other people.
So I love the work that you'redoing and we're going to put
probably about 50 or 60 links inthe show notes.
Speaker 3 (52:13):
Before we started like turned on the on button
saying, oh, we might need to doa part two.
So you're the perfect, likeactually one of the only guests
that we've had where I'm likeI'm still left with many
questions.
Rarely happens.
So we have a lot of experience,a lot to say.
(52:37):
You're super interesting and wedefinitely need to have you
back to talk more about thistopic of advocacy and
transportation, but also all theother stuff you have in your
little vault of portfolio.
Yeah, but I would be so happy,yeah.
So we're going to put links tohow people can reach you,
(52:59):
because they certainly won't beable to spell your name.
So definitely, but we'd like toend all of our podcast, sean,
by we're getting really good atremind.
Oh, too, I is asking you whatdoes embrace it mean to you?
Speaker 4 (53:18):
Well, actually I was going to push back on what you
said about people not wanting todo things, because to me,
nobody can tell your story likeyou can, and that's why I would
actually say that, if you'reuncomfortable, lean into that,
and that's part of embracing.
It too is like okay, you don'thave to be an extrovert to share
(53:39):
your story, and I think youknow.
Going back to give beauty wings, my nonprofit, which is all
about putting our beauty toaction, is everybody has
something to offer.
I have the most gorgeousparents in the world and it made
me so insecure because I waslike, oh my God, they're so
popular, they're so smart,they're so on top of it.
(54:01):
How could I come out of herLike I look at my kids must?
Speaker 3 (54:05):
be.
I can hear my kids saying thesame thing right now.
I mean, who says that abouttheir parents?
You are like a green child.
Speaker 4 (54:15):
I think my mom would beg to differ with you.
I am a daddy.
Speaker 3 (54:19):
This part of this package, sending it to Will and
Blake and I'm going to be likeis this how you talk about me?
Oh my.
God, I'm sorry, but what I haveto do is break.
It means to you that peopleshould tell their stories.
Speaker 4 (54:39):
I mean, I don't think telling your stories is the
first step.
I think embracing it allows youto be able to do that.
But I think, for me, what Irealized is that the beauty in
me does not take away from thebeauty in you, and vice versa.
So the fact that my parents aregorgeous and so together and
like I like to call them aliensbecause I don't I sometimes I
(55:00):
don't think they're human,although they definitely you
know, obviously have flaws,beautiful flaws.
But what I realized is thatjust because they're beautiful
doesn't make me or you or anyoneelse less beautiful.
And so a lot of times we canlook and this connects to your
(55:20):
point that you could look atsomeone like Emily Liddown and
say, well, I could never do whatshe does.
Or you could look at someonelike 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.
And embracing it means embracingwhat you bring to the table,
and sometimes it takes somedigging and self discovery to
(55:43):
get to that nitty gritty.
You know, I never realized Iwas a positive person.
People always told me that andI didn't get it because I had,
you know I had moments ofdepression, I've had breakups,
I've had, you know, my heartbroken, and so I didn't say,
well, what's pop?
But now I embrace that part ofmyself as one of the things.
I am right, it doesn't have tobe everything and you don't have
(56:06):
to be defined by one thing, butembracing it is embracing all
of it, the good, the bad, theugly, and the beauty of the good
, the bad and the ugly within it.
And so give beauty wings andembrace it.
I think I mean I'm that's whyI'm so excited to work with you
guys is all about putting whatbeauty we have to action.
And if you don't know that yourstory can matter to someone
(56:27):
else and you don't tell it.
I mean, imagine if WhitneyHouston 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 thesinging out of the shower.
You know what I mean.
Speaker 1 (56:39):
I would have had nothing.
I would have had no songs tolip sing to in the 80s if she
stayed in the shower because shewas my girl.
Speaker 4 (56:47):
Yeah, but we're not all and it's not.
Someone could say, well, Idon't sing as well, it doesn't
matter, the point is that you'resinging.
The point is that there's music, that we all have music in our
hearts and minds and somethingunique about us.
No matter how many people wehave with the same disability,
not one person has the sameexperience.
(57:07):
You could put two identicaltwins together they still don't
have the same experience.
So every story matters.
That's what embracing it is forme.
Speaker 1 (57:16):
I love that.
Speaker 4 (57:17):
I can never answer quickly, you know I'm sorry, not
sorry.
Speaker 3 (57:22):
I'm doing apologize.
We love having you and we'regoing to have you again.
But yeah, I mean honestly, it'slike the most beautiful,
perfect answer from the mostpositive person I think I've
ever met.
Actually, so like I'm just veryexcited so that when we are
done with this podcast, I'mrunning and calling my children
(57:42):
and voting you exactly.
But, with that said, it was sogreat having you, meeting Sean
with an X, and everyone else inthe world needs to know you too,
if they don't already.
So we're going to make sure tohave you again and to get the
word out about what you're doingand who you are.
Speaker 4 (58:01):
Yes, and please, please, talking about sharing
your stories.
If you're not comfortablesharing it outwards, at least
send me a message.
I want to hear your story, soanyone that's listening.
I'm so happy to connect withthis community and we're here to
uplift each other, and I wouldlove to be here for every single
person on this podcastlistening right now and for you,
(58:22):
ladies, so to be continued onour next podcast.
Speaker 1 (58:27):
Thank you so much, sean.
Thank you, thank you everybody.
Bye Stella, bye Sean, byeeveryone, bye hey.
Embracers.
Thank you so much for listeningand supporting the Embracers
podcast brought to you byLaunchpad 516 Studios executive,
produced by George Andriopoulosand hosted by Laini Ispia and
Stella Lugo.
(58:47):
Our music and sound effects arelicensed through Epidemic Sound
Embrace.
It is hosted with.
Speaker 3 (58:51):
Buzzsprout, do you have a disability related topic
you'd love for us to feature, orcould someone you know be a
fabulous guest on our show?
We would love to hear yourcomments and feature them on our
next podcast.
So leave us a voicemail, or youcan even send us a text to
631-517-0011.
Speaker 1 (59:13):
Make sure to subscribe to this feed wherever
podcasts are available and leaveus a five star review on Apple
Podcasts while you're at it,follow us at Embracic underscore
podcast on Instagram and makesure to follow all the great
podcasts produced by Launchpad516.
Speaker 3 (59:29):
Studios.
We hope you join us next timeand continue to Embrace it.
Welcome to the Embrace it series, where women
with all types of disabilitiescan be real, resourceful and
stylish.
With each episode, you'll walkor roll away with everyday tips,
life hacks and success storiesfrom community leaders and
influencers.
So take off your leg braces andstay a while with Lainey and
Estella.
Speaker 1 (00:26):
Hi, I'm Lainey and I have CMT.
I'm a neuro-muscular disorderaffecting approximately 2.6
million people worldwide.
Speaker 3 (00:37):
That's as many as MS.
We believe disabilities shouldnever get in the way of looking
or feeling good.
Both of us wear leg braces andhave learned through our own
personal journeys to embrace itBrought to you by Launchpad 516
Studios.
Speaker 1 (00:52):
each episode is designed to challenge your own
stigmas and beliefs arounddisability.
We want our listeners to getthe most value for their time
spent with us, so we interviewsome of the most empowering
disability badasses in the world.
Through storytelling, personalexperiences and tips, we're all
reminded of our own strengthsand endless potential.
Speaker 3 (01:09):
For more information and exclusive resources, check
out our websites attrend-ablecom and hnf-curorg,
and don't forget to hit thesubscribe button for future
episodes and special promos.
Speaker 1 (01:30):
Welcome everyone to another episode of the Embraced
Podcast.
Hey Lainey, hey Estella, thisnext guest.
Her name is Sean Horn and sheis a public figure.
She's a humanist, a beauty anddisability advocate, a Forbes
contributor, teacher, achocolate, caffeine and also a
(01:53):
ski pole aficionado.
Welcome, sean.
Speaker 4 (01:57):
Oh, thank you so much for having me, and you know,
there's Instagram bios cominghandy.
I'll tell you yes.
Speaker 3 (02:05):
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 youspell your name.
So what is?
How do you say it?
And I'm trying like cause an Xis very hard to play.
I don't even know how you do.
Oh, no, I get it.
Speaker 4 (02:24):
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 (02:34):
Such a cool name, sean, so welcome, and you're all
over the place.
I mean, estella was like lookat this woman, she is moving up,
she's everywhere.
We recently, like actually metyou in person at the runway of
dreams fashion show in New Yorkand, um, I took a picture with
you and you now are like who isthis?
(02:55):
You're probably like who isthis person in the picture,
Cause I don't think I've gotwords to each other.
Estella was like Laney, get inthe picture.
Speaker 4 (03:04):
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 (03:15):
Perfect.
Speaker 4 (03:16):
So, yeah, not at all, but no, I mean, uh, back to the
name for a second.
I mean I think this goes backto the Embrace it theme, which
is, you know, traversing theworld.
A little background about metraversing the world with two
shiny ski poles with an X inyour name.
Um, you know, it's, it's as if,you know, I was meant to stand
(03:39):
out in some way and I think weall are, you know, maybe less,
not everybody's as obvious.
Um, you know, but there wassomething to to growing up, you
know, in a very visible way or avery apparent way, um, to most
of the world, especially in NewYork city, um, where I'm, I was
born and raised and where I'mactually podcasting with you
(04:01):
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 willstart conversations with you.
How do I say that?
And so, as I've made a lot offriends because people can't
pronounce my name, so there aresome perks I and I, actually, I
(04:23):
always joke with my friend Brian, who also has cerebral palsy,
that we're going to start apodcast called cerebral perxy
about all the perks I love thatthat is like a fantastic name
and you buy away for the record.
Speaker 3 (04:37):
You have me beat and so the name is.
Even though it is said exactlyhow it looks, it is often
confused.
But Sean, with an X, trump'sLaney.
Speaker 4 (04:49):
As you know.
All right, I like confusingpeople.
For the record too, you knowpeople.
People won't forget you.
Speaker 1 (04:57):
Exactly Well.
You're definitely unforgettableand we would love to hear you
know you mentioned you have CP,cerebral palsy.
You can take us back and justgive us a little bit of an
overview on how growing up witha disability with a unique name
in New York City how you youknow how you're upbringing kind
(05:19):
of impacted the wonderful workthat you're doing today.
Speaker 4 (05:23):
Yeah Well, anyone who's heard my story before
knows that I have to start withmy parents.
So it was great to give datashout out right from the
beginning.
But you know, I think a lot ofwhat informs my reality and how
I see the world is the fact thatI had artist parents who taught
me anything was possible.
I mean they were always.
(05:44):
You know, my mom ran her owndepartment and said Estee Lauder
and Avon.
My dad had his own law firm.
They treated me like a futureleader and, being an only child,
I got all the love and now Isay it's my duty to give that
love back Right.
And when we're talking aboutprivilege, I've been privileged
(06:04):
in love and so I always sayprivilege itself is not a
villain, it's what you do withit or don't do with it.
So if you're not using yourprivilege to make space for
somebody else, that's whenprivilege is a problem or when
you're using it to staywillfully ignorant.
But you know, I think all of uscan be allies to each other and
(06:25):
that you know a lot of times asdisability advocates, I'm sure
you guys see this all the timethat you know people assume you
know about all disabilities andI think, as a, as a true
advocate, what we need to do isbe hearing from our friends and
listening and taking in theirstories and and making sure that
(06:46):
, when it's not our experiencethat we're saying, have you
talked to this person who has alived experience of X so that
we're making sure that, yeah, weshouldn't be representing all
disabilities?
You know, I do believe, youknow, my work is even bigger
than disability in the sensethat I think it's about our
humanity and the oneness ofhumanity, but celebrating the
(07:09):
differences in the inside ofthat oneness.
Right, because we all, you know, we all have something
different to offer, even if wehave the same disabilities.
Not one person has the sameexact story.
Speaker 3 (07:23):
Yeah, exactly, which is why cerebral palsy is
different for everyone.
Speaker 1 (07:27):
right, we've had another guest on the power power
carousel yeah.
Speaker 3 (07:32):
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 justknow from our own experience.
So can you give us just alittle glimpse before we start
talking about the stuff that wereally want to talk to you about
, which everyone is listening.
you guys hold on, because we'vegot some great tips and tricks
(07:54):
for you for living withdisabilities, but give us a
little intro of your story, likethe you know, how did you know
you had CP and what was yourlife like?
Speaker 4 (08:06):
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 wasa doctor since the 40s and she
knew, she knew that certainmilestones were supposed to be
happening at a certain age and Iwasn't sitting up and so they
(08:27):
took me to the doctor everymonth for about six months and
it wasn't until my 12 month.
You know, checkup that theysaid okay, she's got.
You know, mild cerebral palsy.
You know my parents didn't eventell me what type of cerebral
palsy I had.
I had no idea that there wasall different types of cerebral
palsy either.
(08:48):
They just told me it was mild.
And I'm not sure, you know thatmight have been exactly what
the doctor told them at the time.
But you know my parents said nofor good or bad.
They said no to griefcounseling and my dad said we're
just going, she's a happy kid,we're just going to keep raising
her this way.
And you know, as soon as I couldget in, I mean, he had me on a
(09:10):
surfboard at six months.
You know I was always yeah, mydad's an athlete, so you know
he's pretty active, so he taughtme to swim, you know, when I
was five, and stuff like that.
So I mean, I think what I feltas an only child was that I was
more because I was different.
They really gave me a sensethat I could do anything as soon
(09:33):
as I could speak.
They were asking me what areyou dreaming about?
How can we support you?
And I realize now what a luxuryand what a gift.
That was A lot of times in theself-esteem work that I do,
which we will get to, you know.
I remember once asking thegirls to write about their day
(09:53):
and one of the girls said to mewow, it's so great to write
about my day.
Nobody's ever asked me how myday was before.
And that really opened my eyes.
And this is why my first Forbesarticle was called as
leadership of luxury, because Irealized that if you're not sure
your kid's gonna make itthrough surgery next week, you
might not be talking to themabout what they're doing in 10
years.
(10:13):
And if you live in a dangerousneighborhood and you're just
hoping your kid makes it homesafe, you might not be talking
to them about what they're doingin 10 years.
You're thinking about the next10 minutes.
So this is not to judge howanyone else was raised or how
other parents do it, but Irealized that in a lot of ways
what made me want to advocate?
(10:35):
I always thought that theadvocacy I saw seemed very angry
and very and there's a lot tobe angry about.
I wanna be clear that I thinkthere's space for every kind of
voice in our community, but Ijust didn't resonate with me
because I had a very bubble-likeexperience of I get to see the
(10:59):
kindest side of New Yorkerswalking with two ski poles every
day.
I wouldn't be able to go half ablock without somebody opening
a door for me or offering orstarting a conversation of some
kind.
So for me I was very consciousof what and the people that it
brought into my life and I knowthat that's not everybody's
(11:21):
experience.
In fact I know that that's arare experience of disability
and I joke I say that myexperience of disability and not
that I've ever been pregnant,but it's kind of like being
perpetually pregnant in the waythat people treat you.
I have lots of strangers.
Let's say it's raining.
Oh, be careful, or we'll giveup a seat, not in the subway.
(11:46):
Somehow all chivalry disappearswhen you're in the subway.
It's a tie, yeah, or in TimesSquare for some reason.
But everyone outside of TimesSquare in the subway are
generally incredibly kind.
In fact, I almost overly so.
But because of that, I'vereceived so much kindness, even
(12:06):
from strangers, not just myparents that I feel it is my
duty to give that back.
And also, with the self-esteemwork that I do, it really came
out of the fact that it reallydid not sit well with me that
anyone would feel like lessbecause of their disability or
because they're a woman or anyway that they feel different or
(12:28):
outside.
So the self-esteem work I doisn't just for the disability
community, it's for humanity.
I hope to see that everyonecelebrates their beauty in equal
measure.
So that was really the path Iwas on and I was very content
doing that at NYU.
And then I got asked to judgean assistive technology
(12:51):
competition through AT&T.
I knew nothing about assistivetechnology.
I made that very clear to themand I think you can relate to
this, having lived experience ofdisability.
When your expertise is yourlived experience, boy, it opens
up your world.
So I'm not a technologist and Iended up doing this and then
(13:11):
being asked to speak on film,even though I'm not a filmmaker
for real abilities and thenjoining their film selection
committee and then realizingrepresentation was so important.
Not just let me back up alittle.
Before I even did myself withSTEAM classes, I also pitched
the Dove campaign asking them toinclude people with
(13:32):
disabilities in theiradvertising.
Speaker 3 (13:35):
And the reason for that was A cause for that,
because I think that is so likeI read that about you and your
story.
I watched that, yeah, yeah,okay.
So I mean tell us about thatspecifically, the campaign and
what you did and how old wereyou, and yeah, well, you know
the thing is, it's so funny.
Speaker 4 (13:53):
Everybody always wanted to make me a poster trial
for something and I reallyresisted it because I thought
this is the obvious thing to do.
I already call enough attentionto myself on these New York
City streets.
Last thing I need to do is theobvious, and I think what
happened for me was my secondjob ever in New York was for a
(14:14):
theater that had 45 memberstotal, 15 with disabilities, and
they were actors, studio actors, kennedy Center, award-winning
playwrights writing in theirjournals about suicide attempts,
about body image, aboutdisability, identity, and there
was a lot of dysmorphia there.
And I looked in front of me andI saw the most gorgeous,
(14:37):
charming, beloved people thatI'd ever met and I thought, if
this is how they're doing and Ilook up to them, how's everyone
else doing?
And I wondered why is it that?
I know it sounds strange, but Ididn't to your question earlier
.
I didn't even really, eventhough I knew I had cerebral
(14:57):
palsy from as soon as I couldremember, I never realized I was
that different.
Like I think there is somethinggenerational where I think used
to be at least 20 plus yearsago, when anyone that was
growing up, and 100 years ago,anyone that was growing up
(15:19):
different had to adjust to theirenvironment and be scrappy.
I think in the last 10 to 15years, with social media and our
awareness of so many differentcommunities, now there's an
attitude of I'm here, you'resupposed to accommodate me, but
I think that that is relativelynew.
But I think the positive partof that is I genuinely did not.
(15:43):
I knew I was different, but Igenuinely, outside of the
obvious, the ski poles thoughtI'm just like everybody else.
And I remember being nine yearsold walking through my lobby
where we had a floor to ceilinglength mirror my entire life and
I only then looked in themirror and saw my left knee went
(16:04):
in a little bit as I was skiingpast and I was like, wait a
minute, it never occurred to me.
I thought I walked just likeeveryone else, just with poles
too.
And when I saw my knee go in Iwas like, oh, I am different,
like I do walk differently.
That's how much of a bubble.
And you could say it'sdelusional.
(16:25):
You could say many things, buthonestly I think in a lot of
ways there was a lot of benefitto really not feeling that
different.
I knew I was different, john.
Speaker 3 (16:35):
It's already so interesting to me.
I mean, one of your parents isAsian, one of your parents is
Jewish I'm also Jewish, by theway so that alone is like makes
you different, right?
But yet you're talking aboutyour disability.
You have so many things thatmake you unique all of us do but
yours are very visible.
Okay, we have to go back to thedub campaign.
(16:58):
You have to tell us about that.
But also, what are ski poles?
Like people who are listeningand don't know.
Speaker 4 (17:04):
And it kind of feeds into when we talk about travel
later.
It'll feed into that too.
But no, but I promise I wasgetting there.
My point was, my point was thatI really was confused as to why
I was the only one here feelinglike my disability was an asset
and for many years it felt likethat was the easy part of my
(17:29):
life.
I cut the lines of Disney World, the airport, et cetera, and I
thought and it was actually Imean, I know it sounds actually
kind of like I must have beenunder 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.
(17:51):
So, going back to the dubcampaign, the reason that I was
thinking about this is, again, Isaw my friends struggling and I
said, okay, I think it'sprobably because they didn't
have control over who theirparents were or if they went to
the right schools, which all ofthat.
My parents really did theirresearch.
I went to UCP, united cerebralpalsy, which meant that in
(18:14):
preschool I went to school withkids who were just like me.
We were all different, but evenwhen I was mainstreamed quote
unquote later on being the onlygirl with ski poles, or the only
girl with cerebral palsy in myclass, even though there was
another.
There was one other girl whohappened to be, by the way,
(18:35):
asian and had CP also, so Ithink that helped too.
We were, you know, andrepresentation yeah.
I mean the fact that the oneother person was, in a way,
we're very different but alsohaving similar backgrounds.
So she was one of my bestfriends, but they made sure to
put one of us in each class sothat I don't know for our
(18:59):
individuality, for ourdevelopment, like.
But even when I was insituations where I was the only,
you know, visibly disabledperson, I never felt alone and I
never.
And because I didn't feel thatdifferent, I'm like well, no, I
belong here, and so it's gonnasound very strange.
(19:21):
You know, I was very popular inelementary school, I was very
popular in junior high, and itwas 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 lovedeverybody and so this idea that
I couldn't be loved back wasreally disturbing to me.
(19:43):
But I, when I look at that, ina way, I bullied myself, I think
, and people responded to how Ifelt about it in kind.
So, going back to Dove for asecond, so I what happened for
me was that I really started tothink about how come?
Yeah, I think I just wanted totalk about the high school part
(20:06):
because I don't want people tothink that I just never had
self-doubt or I never wasinsecure, because I was,
incredibly, because I waslooking at validation through
other people, which is where Ihad gotten it before, and it
stopped working for me and Irealized that that's not enough
right.
We can't base ourselves overhow much we're liked or disliked
(20:28):
.
But going back to Dove for asecond, you know, when I
realized that you don't havecontrol over what schools you go
to, what kind of supportsystems you have, I said where
else do we get our sense ofself-esteem?
And you could answer a lot ofthings like media in general.
But I think the answer that cameat the time was the beauty
(20:49):
industry, and Dove had alreadydone beautifully inclusive
things for, you know, women ofall sizes and older women, and
so, to me, including people withdisabilities and their campaign
was not only the next step, butknowing how my friends were
doing it was incredibly criticalto their survival, in my
(21:09):
opinion.
So I didn't really, you know, Ihad no experience.
I had no advocacy experience atall, but all I knew was that if
I didn't do it, who would?
So I filmed a minute and 23second video in my mother's
(21:30):
living room with a friend fromchurch who did it for free.
We had zero budget.
If you saw how messy that roomactually was outside of the room
I have some behind this and Ialways laugh and I see the
behind the scenes photos becauseI think they're like what?
But anyway, and I made it forone person, I didn't say I mean,
(21:52):
this was the early days ofYouTube and it didn't even occur
to me this idea of going viral.
You know, I made it for oneperson that apparently no longer
worked at Dove, which heshortly told me.
But my cousin saw the video andshe said you know you already
made the video, why don't youjust share it on Facebook?
(22:13):
And so I did.
And I sent it to a few Facebookgroups that had some themes
connected to the video in it andmy last line was oh, I forget
the line now, but the wordpositive, the word positive was
in it.
So I sent it to a group calledPositively Positive and they
(22:36):
posted it on their group andthat video got, I think, 16,000
views in four days and that'snot a lot.
I mean, it's not Justin Bieberviral.
But I got letters from thePhilippines.
I got letters from Australia aman with AIDS for 30 years
saying you know what it meant tohim a woman with rheumatoid
(22:59):
arthritis.
And I have to say, in thatmoment I realized how small.
I was looking at disability.
I was really thinking aboutmobility disabilities when I
made that video, as most peopledo.
And I will tell you, the videowas not captioned, the video was
not audio described, Because Ididn't even know about those
things at the time.
(23:21):
How did Dove get it?
Well, guess what?
They got it from two differentI knew two different sources
showed them the video that theyalready 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 neverheard from them again.
I never heard how Dove feltabout it.
(23:43):
I never got a response fromDove directly.
It just died on the vine and Iactually think in a way, it was
meant to be, Because I thinkwhen I first started this, Dove
was the end-all-be-all and whenthey said no, I realized, wow,
this is so much bigger than onebeauty company.
(24:03):
And the fact that the majorityof people actually supporting
the video had no disabilities atall meant there was something
more universal that people weregetting.
And in a way, it was a gift tome that Dove said no at that
time, Because I think I couldhave just gotten very focused on
that one thing.
It could have been a shootingstar in the sky and then gone,
(24:28):
but because it didn't happen andother things happened, like
being handed classes at NYUhaving never taught a day in my
life, by the way so it opened myworld in a way that was
unexpected, and it did not go,and this is why I'm always
telling you there's no suchthing as failure.
If you're still here, youhaven't failed, and I was a
(24:53):
telemarketer in my previous life, so you really have a thick
skin for rejection.
Well, I was going to say when nois 98% of your day.
You're not so afraid of itanymore Because yeah and yes
means so much more when that'syour reality as well.
Speaker 1 (25:10):
So We'll be right back.
This is George, fred and Jason,the co-leaders of Speak.
Speaker 6 (25:17):
Interrupting to say that we hope you're enjoying
this episode, but please makesure to check out our new show,
the Speak Podcast, another greatshow produced by Launchpad 516
Studios.
New episodes available everyweek on all of your favorite
podcast platforms.
You can find the podcast on thewebsite.
And you can find the podcast onthe website.
And you can find the podcast onthe website.
(25:40):
All of your favorite podcastplatforms.
Speaker 5 (25:43):
Each Speak Talk is about six to 10 minutes in
length, and the talks are givenin storytelling format.
There are three key moments ineach Speak Talk the moment of
truth, the moment oftransformation and the moment of
impact.
We host pop-up events all overthe world, and now we're
bringing our talks to yourdevice.
Speaker 6 (26:03):
Join us on the Speak Podcast as our speakers step
onto the stage and into thespotlight with impactful ideas
and stories.
We'll let you get back to theshow you were listening to
another great podcast fromLaunchpad 516 Studios.
Speaker 1 (26:23):
You're tuning in to embrace it with Laini Anastella,
brought to you by Launchpad 516Studios.
You know I love your passionand obviously it's not just the
beauty industry that you've putthat passion to work for.
You are a Forbes contributingwriter and you've been featured
(26:43):
on the White House blog and Ithink in some of our previous
conversations you really seemlike someone who just can see
and identify a problem and thenlook for solutions and put your
energy towards what's needed atthat moment.
Is that accurate?
Speaker 4 (27:05):
I mean.
I think that I mean when peoplecome to me and ask, in fact,
someone did that they're in oneparticular area and they wanted
to break out.
And I said, well, where do yousee the need areas?
Because that's where you needto go.
And even when I started withthe self-esteem, I was content
doing that and then I realized,wait, there's assistive tech,
there's adaptive fashion.
(27:26):
And then I have to say, on apositive note, that the beauty
industry finally, within thelast two years, has gotten the
memo and they're playing catchup and doing it fast.
So there is hope.
It didn't happen in the momentthat I wanted it and didn't
happen with Dove, but even Dovehas improved Eventually, yeah.
(27:47):
Yeah, I mean I think they couldbe doing more, but I'm glad
that they're doing anything.
To be honest, and you know whatI mean, that was more than 10
years ago.
So leadership changes andattitudes change and I think
that, honestly, there is a waveof change.
I've always said that I thoughtdisability inclusion was
(28:08):
inevitable, but that doesn'tmean we can't be a catalyst for
it.
Speaker 3 (28:12):
Yeah, so speaking of things that you, when you see
the need, as Estella said, youmake things happen, you find
solutions.
So there's so many things thatyou are knowledge about in the
world and we're going to include, for sure, info for everybody
who's listening on yourself-esteem workshops and your
(28:33):
articles and forum and all thestuff that you're doing.
But can you talk about the needwhen it comes to transportation
for people with disabilitiesand what you and how that came
about for you and what you'redoing about it?
Speaker 4 (28:47):
Yeah, and speaking of the need, I mean I wasn't
planning on being atransportation advocate, I can
tell you that much.
But after 22 years onAccessoride, when you have to
wait two hours or you get leftbehind or you're five hours on
the same vehicle because you'redropping off so many people on
(29:07):
all boroughs, I mean I wentthrough so many things that I
actually, when I say 22 years, Itook a five-year break because
of how stressful it was when Iwas in college.
No, because if you're only homefor the break and you only,
have, let's say, a week and ahalf with your family, you don't
have two hours to wait everysingle day.
And I just said you know whatfor my mental health, I've got
(29:31):
to just and keep in mind I wason Accessoride even before GPS,
so it was even worse, whichseems almost unfathomable for
people.
But even so, I think it wasn'tuntil I was left by an Uber in I
(29:51):
think it was it 2019?
I have to look.
I was left by an Uber, my bestfriend and I my best friend's on
she's on a walker and we wereleaving my uncle's house in
Naples, florida, and this guyhad come 15 minutes out of the
(30:13):
way to go to this gatedcommunity that we were in, took
one look at us and backed out ofthe driveway.
My uncle said where are yougoing?
He just said I canceled theride and I had been passed by
cab drivers before, and alwaysmy attitude was if they don't
want me, I don't want them.
But this is different.
This person had my name.
(30:33):
They came all this way out andstill bailed, but my first
thought was he did not speakback to my uncle.
I really felt that in this case,this guy just had no clue what
to do with two of us, and so Icalled Uber and I said listen, I
don't want this guy fired, Iwant him trained, because I'm
(30:56):
sure he has a family.
And it was pretty clear he wasnot from the United States.
I was actually looking forwardto 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'sanother part of my New York
experience.
You know cab drivers, doorman,they're all my best friends.
You know they're the guys thathelped me the most.
(31:18):
So I, you know I've alwaystried to return the favor in
some way, and we have.
Speaker 3 (31:23):
I have the greatest conversations and taxis and
ubers, so okay you are solikable and I totally I'm sure
that you have besties all overNew York City and wherever
because you're super likable andobviously bubbly but you
(31:44):
couldn't have been just standingthere.
That Uber the nice guy who yousaw in the picture with you know
that you wanted to talk to.
He pulled away.
I mean, like were you pissed?
Speaker 4 (31:55):
I mean oh well, first of all, I was.
I was shocked.
Oh, and my uncle?
You know, the reason I actuallydidn't get pissed is that my
uncle was so upset that I wasbusy calming him down.
I said, listen, you know,because my again, my, my thought
is I don't want anyone whodoesn't want me, so let him go,
(32:16):
you know.
But at the same time, I wasthinking about the bigger
picture and I realized this Imust not have been the first
person and in fact, if you readthat article, what I did was I
collected up all the experiencesthat I could from my friends on
Facebook and elsewhere, youknow, because I was shocked that
when how not shocked everybodywas.
(32:38):
And somebody I know, for exampleHabingerma, wrote about the
fact that she was left by threeUbers in one night in New York
City because of her service dog.
I've since learned that alsowhen you have a service dog,
that that a lot of times it'salso within the Islamic religion
(33:00):
that they don't want dogs intheir car.
There's a religious reasonbehind that.
Now, I don't know exactly why,but so it's so, anyway, what
I've learned time and time againwhether it was the dove pitch
or assistive tech or fashionthat there's.
So every time that you have anissue, there's a hundred
(33:21):
thousand people behind you thathave the same issue, that have
not had a chance to share theirstory.
And so, you know, when this Uberthing happened, I wanted to
make sure that I wasn't justsharing a kind of crappy thing
that happened to me and my bestfriend, but really talking about
what is the larger issue here.
And my shock was not the factthat this happened, because of
(33:45):
course, I've been left by cabs,you know, passing by before, but
it was more Uber's lack ofresponse and their refusal.
They actually told me we cannottrain them because we don't
recognize them as employees, andso it became more of an issue
of what is the larger problemhere that we're not addressing,
(34:10):
you know, and it's not just Uber, it's, I think, many different
forms of transportation and yeahso no.
So that was the beginning ofthat.
And then you know there's anincredible program that I was a
part of.
The good news, you know, andit's also kind of bad news
(34:32):
because they're trying to cut it, but the Accessoride, in
response to their horribleservice, created a pilot program
where they allowed 1200 of usto travel same day, by the way,
if you're on traditionalparatransit, you do not have
same day options.
So this was revolutionary.
You call a car.
Speaker 3 (34:53):
They call us non-New Yorkers.
What is paratransit mean, LikeI don't even know.
Speaker 1 (34:59):
Even access accessoride as well, in case
people don't use that.
Speaker 4 (35:03):
Yeah, accessoride is the New York City name,
paratransit is the national namefor, basically, you know,
there's many parts of Americathat are not ADA compliant,
especially New York with oursubway system, and so
accessoride and paratransitnationally were created to, you
know, address that gap and tofail safe the fact that they're,
(35:27):
you know, not legally, you know, ada compliant.
So, anyway, so the way thatparatransit works in New York
City, you have to book one totwo days in advance, before 5 pm
.
You need exact times, exactlocations.
That cannot change.
There's no such thing as a lastminute emergency.
(35:49):
You also can't guarantee, youknow, if you pick someone up and
it takes two hours to get themto their location.
So even if you have a pickuptime and, let's say, you get
stuck in traffic anyway, you'rekind of SOL.
So so I mean the traditionalsystem.
(36:11):
I mean I think anyone that'stelling you it's good probably
works for accessoride, becauseeverybody else knows that their
nickname is stressoride for areason.
Yeah and so.
So they create.
But here was the good news theycreated a program which used an
Uber like app.
In fact, now they only recentlyallowed us to use Uber apps.
(36:36):
You could use an Uber like appcalled Arrow for taxis or curb
at one point was part of it andyou could book a car within
minutes.
It was unlimited and availableto us, and it was still, on
average, cheaper.
Those blue and white vans yousee in New York, which are the
(36:57):
traditional accessoride vans,cost $150 per person per ride to
operate and so, even beingunlimited, it was an average of
$47 per person per ride for theother vehicles which would show
up on time or close to it.
And so you know it was honestly.
(37:19):
New York is the greatest city inthe world.
It makes sense to me.
I'm sorry I'm biased Ifanywhere else I'm biased, I'm
biased, but I mean we have thelargest transportation system in
the world here, and so youcannot compare it to other
cities.
I hear this comparison all thetime.
The truth is is that there's areason we call it a New York
(37:41):
minute and I do take Umbridge tothe fact that our New York
minutes seem to count less thanothers and this program really
was the antidote to that, andthey are now constantly trying
to cut it and tell people it'sterrible and that it actually
doesn't work, which I'm sorry.
(38:02):
I'm here to be the bearer oftruth, which is, you know the
cheapest option, which is alsothe most efficient to me, should
be not only not cut, butexpanded the standard, yeah,
yeah, so that was another, butI'm saying all this to say that
ended up becoming another areaof advocacy and I got over.
(38:24):
And if you guys want to sign thepetition, it's still active.
Yes, please, we'll share it aswell.
We have 8100 signaturessupporting, you know, not
cutting this program, but for me, even beyond this particular
program, my question is ifyou're not requiring everybody
to travel by bus or subway uh,one to two days in advance.
(38:46):
Imagine if you had to book yoursubway rides one to two days in
advance.
If you're not requiring that ofeveryone, then why are you
requiring it of us?
Speaker 3 (38:54):
Absolutely Right.
But on the Uber app now it isum, like the Uber and Lyft app
isn't there a way for people toindicate that they have
accessibility and that they wantan accessible vehicle?
Absolutely.
So how do they if, like, peopledon't know that that are
listening, like they just go onthe app and that's where they're
going?
Speaker 4 (39:14):
Well, you can look for what's called a WAV or wave
vehicle.
It stands for wheelchairaccessible vehicle.
Um, you know, I, um, I don'tknow if there's like a way to
say I am disabled, but you havethe comments section where you
can do that, but there'scertainly they do mark, uh,
wheelchair accessible vehicles.
(39:35):
It's usually at the very endwhen you're scrolling down.
Um, and I have.
I'm happy to report that overNew Year's, the wheelchair
accessible vehicle I took withmy first grade best friend, the
one I was telling you about, theother Asian girl with CP, um,
we, we took it to my second andfourth grade best friend's house
(39:55):
and um, and it was less, it wascheaper than the regular
vehicle.
Speaker 1 (40:01):
So nice.
So win, win for, for, for yourfriends, and I think I will
definitely share the um, thepetition and get more support
for that.
But what happens when it's amore personal interaction and
I'm sure there's been timeswhere you have had to really
(40:23):
advocate for yourself, whetherthat's in a vehicle or other
modes of transportation Can youspeak a little bit to that and,
I think, maybe provide any tipsor you know, things that people
can do to to make thoseexperiences less stressful?
Speaker 4 (40:40):
Yeah.
So for those listening to me,you might be saying well, she's
a Forbes contributor, um, youknow, I've worked with the
mayor's office for people withdisabilities.
I will acknowledge that this ispart of why I have used my
voice.
Beyond this is that I realize Ihave platforms, and I have
wonderful people in my life, um,who are responsive and in
(41:02):
positions to help me.
So I think, though, even if youdon't have that the wonderful
thing, going back to my pointabout social media earlier, I
think we now, whether you have,have perceived whether you feel
empowered or not.
Anyone can start a YouTubechannel.
(41:22):
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 anyonecan, you know, use what?
What's out there, and I mean wesee Everyday people going viral
(41:45):
, all the time for reasons,because people are passionate
about whatever they're talkingabout and supporting it.
So, so you don't have to beSomeone with, or you could start
a podcast, like you guys did,but there's so many ways for
everyday people To, no matterwhere you come from.
(42:06):
If you have the internet, youhave now a platform.
It used to be, you know, 50years ago, of ABC, nbc or CBS
didn't cover it.
You didn't.
You know what I mean.
It just it was.
Speaker 3 (42:21):
Right, like the everyday person who's listening.
Not everyone wants to do such abig thing.
They don't necessarily want tobe, you know, a spokesperson and
, and, you know, create aYouTube channel or make a big
thing there.
I get a lot of emails forpeople like what do I do at the
TSA line?
I don't have, they don't havewhat I have, what do you call it
(42:50):
?
And get through faster likethey.
They wear braces on their leg.
They're worried that they'regonna go off, that they have to
show them that they have to takeoff their shoes.
They're uncomfortable and they,let's say, they feel like very,
you know, uncomfortable ingeneral and they have a bad
experience with the TSA officer.
Like they don't go.
(43:11):
I need to.
What do they do on an immediatelevel and in the moment and
then afterwards?
You any thoughts?
Speaker 4 (43:18):
Well, I think there's a few layers to this question,
so I'm gonna try to answer eachlayer, which is, first, I think,
it's getting comfortable withwhat it is you know about
yourself and you need, becausethe truth is a lot of us with
disabilities, let's face.
It wants to assume that peopleare mind readers and know
exactly how to treat us theminute they see us, which which
(43:39):
would be great in a utopianworld, but the truth is that,
yeah, I think some of it ispracticing.
How do you express exactly whatit is you need and if there's
going to be something where youalready Anticipate there might
be issues, or you've had issuesin the past.
You know getting something likea doctor's note, or Getting you
(44:01):
know if you're not good atexplaining it, you know, you
know, maybe finding, first ofall, I do think, for those who
can, you know practicing thatand having it come from you is
is Important, but let's say,someone is nonverbal or what
have you?
You know, either havingsomething written out or someone
(44:21):
who can.
Yeah, and I will tell you,though I do think that you know
we obviously want to advocatefor as much independence as
possible, but the truth is isthat every person on this planet
needs help, and there are goingto be times where you know If
you can't do it, you're going tolike if I don't ask for help at
(44:42):
the buffet line, I will not eat.
Because I walk with two poles,my hands are occupied.
There's no way I can carry thatplate.
And so I, you know.
And if there's, you know, I canuse stairs from time to time.
There are times where the onlyway up is a couple of stairs and
I need to ask a completestranger for help up those
stairs.
Now, I know that a lot ofpeople don't have that option.
(45:05):
I I want to acknowledge that,but I think being able to be
comfortable with what you knowabout 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?
You know, this woman looked atmy adapted ski poles, which are
(45:28):
my assistive devices that I'vebeen using forever, and For the
first time in 30 years, I triedto separate me from them, which
is actually goes against thepassengers bill of rights For
people with disabilities,because you're not supposed to
separate Anyone, under anycircumstance, from their
assistive devices and when Isaid these are the only
(45:51):
assistive devices I can use, shesaid, no, you made these this
way and like she didn't.
Just my issue and the reasonwhy I said something is, you
know, if this was the policywhich 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
(46:14):
or polite way to express it,but she genuinely treated me
like I was bringing AK-47s ontothis flight and yeah, and.
So If anyone wants to hear thewhole story of that since I know
we don't have much time leftyou can listen to the women's
(46:35):
e-news podcast that I did, whereI detail everything that
happened there.
But I think for me, what ithighlighted was, you know, this
whole experience and how peoplewere so kind to me afterwards
and shared their own stories.
I realized that again, it comesdown to this training thing and
you know, in case you want toknow, there, it was very
(46:58):
confusing.
After the fact, when I did filethis complaint, I got a form
letter that basically told me itcould happen again because my
ski poles were adapted andBecause ski poles are
traditionally sharp, which, bythe way, the ends of my ski
poles are no sharper than a pen.
I checked and so pens areallowed on the plane.
(47:20):
So I definitely did not agreewith that assessment.
And then, about a week later, Igot another letter saying that
my ski poles were okay.
And this again talks aboutsometimes these institutions are
almost too big for their owngood.
And so I was getting ready witha lawyer's letter and all this
stuff when this other lettercame through and they did inform
(47:44):
me that they were sending.
The previous letter said in youknow, aggressive cases we will
train, but did not give me anyinsight 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 Idon't want to ruin anybody's
life, but I just want to makesure that this doesn't happen to
(48:07):
any of my brothers and sistersand family with disabilities.
So that was really my concernreally in doing this.
And so I got this other letterwhere they basically said that
materials were sent to themanagement at JFK.
I still didn't know what thatmeant, by the way, materials
yeah, it's very big terminology,so I get this, yeah and at
(48:29):
least they have Officially toldme that, as long as I
communicate to the TSA agentthat these are assistive devices
, that they are approved to goforward.
So I have a piece of paper thatsays okay, which was progress.
But I, I guarantee you, I dosuspect that that would not have
happened If I had not gone tochannel 11 first.
(48:51):
So to your point and yourquestion earlier.
You may not want to do thesethings, but sometimes that is
the only way.
Sometimes that is the only way.
And if you are really shy, thenyou have to write people like
me and Emily Lidow and HabinGerma and all these people who
(49:14):
are.
Let us talk about it if youwant us to.
You know, I want to hear frompeople what their stories are
and share those.
So it doesn't necessarily haveto come from you, although I
think it is better when it comesfrom you.
Speaker 1 (49:28):
I think that's a great point because you're
absolutely right, there are somany advocates out there with
those channels, with thoseconnections tied to the media,
who can, like you said, continueto collect these stories and
show them as evidence to thissystemic problem and this
(49:49):
systemic need for accessibility,training across all forms of
transportation, and I meanacross every industry.
It's just people don't knowwhat to do and so they do
nothing, and that is not anoption anymore.
Speaker 4 (50:07):
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, Iwas the most stage frighten
person you could imagine.
I didn't want to do this.
I was so terrified.
But you know, when I realizedit wasn't about me, that was
when I had the courage and thestrength again, because that
(50:29):
people pleasing girl from age 15could not bat them the idea of
not being loved by everybody.
But I realized I had to riskthat in order to actually make
any sort of change and I had tostop caring so much about what
other people thought and caringmore about what I could do to
(50:52):
help others.
And as long as I was focused onservice, then it was something
that we could really.
You know, that's what gave mecourage, strength and suddenly
my fear of speaking went away,because it's not about me right,
I love.
Speaker 1 (51:07):
I can totally relate.
I think it's you know.
It's like I never wanted tostart a podcast.
I don't like the sound of myown voice.
Lady doesn't either.
You have such a pretty voicethough it's.
Speaker 3 (51:19):
Really I never listened to a single one of our
episodes because I was so scaredof those, because I don't like
money, I know I don't.
It's like being yourself oncamera and you're like, ah and,
by the way, it has nothing to dowith Losa, it's just, literally
, it's just I cringe, I mean.
Speaker 1 (51:35):
It's just the human brain.
But I think to your point, it'swhen we step out of our own ego
and our own kind of fear abouthow we're going to be judged and
take it as this is somethingbigger than myself and I owe it
to you know.
I owe it to be of service inthis world.
(51:55):
I owe it to give my disabilitymeaning and my experience
meaning.
I put it to work and open doorsfor other people.
So I love the work that you'redoing and we're going to put
probably about 50 or 60 links inthe show notes.
Speaker 3 (52:13):
Before we started like turned on the on button
saying, oh, we might need to doa part two.
So you're the perfect, likeactually one of the only guests
that we've had where I'm likeI'm still left with many
questions.
Rarely happens.
So we have a lot of experience,a lot to say.
(52:37):
You're super interesting and wedefinitely need to have you
back to talk more about thistopic of advocacy and
transportation, but also all theother stuff you have in your
little vault of portfolio.
Yeah, but I would be so happy,yeah.
So we're going to put links tohow people can reach you,
(52:59):
because they certainly won't beable to spell your name.
So definitely, but we'd like toend all of our podcast, sean,
by we're getting really good atremind.
Oh, too, I is asking you whatdoes embrace it mean to you?
Speaker 4 (53:18):
Well, actually I was going to push back on what you
said about people not wanting todo things, because to me,
nobody can tell your story likeyou can, and that's why I would
actually say that, if you'reuncomfortable, lean into that,
and that's part of embracing.
It too is like okay, you don'thave to be an extrovert to share
(53:39):
your story, and I think youknow.
Going back to give beauty wings, my nonprofit, which is all
about putting our beauty toaction, is everybody has
something to offer.
I have the most gorgeousparents in the world and it made
me so insecure because I waslike, oh my God, they're so
popular, they're so smart,they're so on top of it.
(54:01):
How could I come out of herLike I look at my kids must?
Speaker 3 (54:05):
be.
I can hear my kids saying thesame thing right now.
I mean, who says that abouttheir parents?
You are like a green child.
Speaker 4 (54:15):
I think my mom would beg to differ with you.
I am a daddy.
Speaker 3 (54:19):
This part of this package, sending it to Will and
Blake and I'm going to be likeis this how you talk about me?
Oh my.
God, I'm sorry, but what I haveto do is break.
It means to you that peopleshould tell their stories.
Speaker 4 (54:39):
I mean, I don't think telling your stories is the
first step.
I think embracing it allows youto be able to do that.
But I think, for me, what Irealized is that the beauty in
me does not take away from thebeauty in you, and vice versa.
So the fact that my parents aregorgeous and so together and
like I like to call them aliensbecause I don't I sometimes I
(55:00):
don't think they're human,although they definitely you
know, obviously have flaws,beautiful flaws.
But what I realized is thatjust because they're beautiful
doesn't make me or you or anyoneelse less beautiful.
And so a lot of times we canlook and this connects to your
(55:20):
point that you could look atsomeone like Emily Liddown and
say, well, I could never do whatshe does.
Or you could look at someonelike 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.
And embracing it means embracingwhat you bring to the table,
and sometimes it takes somedigging and self discovery to
(55:43):
get to that nitty gritty.
You know, I never realized Iwas a positive person.
People always told me that andI didn't get it because I had,
you know I had moments ofdepression, I've had breakups,
I've had, you know, my heartbroken, and so I didn't say,
well, what's pop?
But now I embrace that part ofmyself as one of the things.
I am right, it doesn't have tobe everything and you don't have
(56:06):
to be defined by one thing, butembracing it is embracing all
of it, the good, the bad, theugly, and the beauty of the good
, the bad and the ugly within it.
And so give beauty wings andembrace it.
I think I mean I'm that's whyI'm so excited to work with you
guys is all about putting whatbeauty we have to action.
And if you don't know that yourstory can matter to someone
(56:27):
else and you don't tell it.
I mean, imagine if WhitneyHouston 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 thesinging out of the shower.
You know what I mean.
Speaker 1 (56:39):
I would have had nothing.
I would have had no songs tolip sing to in the 80s if she
stayed in the shower because shewas my girl.
Speaker 4 (56:47):
Yeah, but we're not all and it's not.
Someone could say, well, Idon't sing as well, it doesn't
matter, the point is that you'resinging.
The point is that there's music, that we all have music in our
hearts and minds and somethingunique about us.
No matter how many people wehave with the same disability,
not one person has the sameexperience.
(57:07):
You could put two identicaltwins together they still don't
have the same experience.
So every story matters.
That's what embracing it is forme.
Speaker 1 (57:16):
I love that.
Speaker 4 (57:17):
I can never answer quickly, you know I'm sorry, not
sorry.
Speaker 3 (57:22):
I'm doing apologize.
We love having you and we'regoing to have you again.
But yeah, I mean honestly, it'slike the most beautiful,
perfect answer from the mostpositive person I think I've
ever met.
Actually, so like I'm just veryexcited so that when we are
done with this podcast, I'mrunning and calling my children
(57:42):
and voting you exactly.
But, with that said, it was sogreat having you, meeting Sean
with an X, and everyone else inthe world needs to know you too,
if they don't already.
So we're going to make sure tohave you again and to get the
word out about what you're doingand who you are.
Speaker 4 (58:01):
Yes, and please, please, talking about sharing
your stories.
If you're not comfortablesharing it outwards, at least
send me a message.
I want to hear your story, soanyone that's listening.
I'm so happy to connect withthis community and we're here to
uplift each other, and I wouldlove to be here for every single
person on this podcastlistening right now and for you,
(58:22):
ladies, so to be continued onour next podcast.
Speaker 1 (58:27):
Thank you so much, sean.
Thank you, thank you everybody.
Bye Stella, bye Sean, byeeveryone, bye hey.
Embracers.
Thank you so much for listeningand supporting the Embracers
podcast brought to you byLaunchpad 516 Studios executive,
produced by George Andriopoulosand hosted by Laini Ispia and
Stella Lugo.
(58:47):
Our music and sound effects arelicensed through Epidemic Sound
Embrace.
It is hosted with.
Speaker 3 (58:51):
Buzzsprout, do you have a disability related topic
you'd love for us to feature, orcould someone you know be a
fabulous guest on our show?
We would love to hear yourcomments and feature them on our
next podcast.
So leave us a voicemail, or youcan even send us a text to
631-517-0011.
Speaker 1 (59:13):
Make sure to subscribe to this feed wherever
podcasts are available and leaveus a five star review on Apple
Podcasts while you're at it,follow us at Embracic underscore
podcast on Instagram and makesure to follow all the great
podcasts produced by Launchpad516.
Speaker 3 (59:29):
Studios.
We hope you join us next timeand continue to Embrace it.
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Therapy Gecko
An unlicensed lizard psychologist travels the universe talking to strangers about absolutely nothing. TO CALL THE GECKO: follow me on https://www.twitch.tv/lyleforever to get a notification for when I am taking calls. I am usually live Mondays, Wednesdays, and Fridays but lately a lot of other times too. I am a gecko.