November 11, 2023 • 41 mins
In this inspiring episode, we dive into the remarkable journey of Dustin, who was diagnosed with profound bilateral hearing loss at the young age of five. Despite this life-changing diagnosis, Dustin's story is one of resilience, empowerment, and a determination to spread positivity.
From school hearing exams to facing unexpected challenges, Dustin’s experiences have been both unique and universal. We explore the transformative moment in his life when a simple divider during a hearing test changed everything. No longer able to rely on lip reading, he surprised not only the school nurse but also his entire family.
Join us as Dustin shares how he navigated the challenges of growing up with hearing loss, turning adversity into an opportunity for growth. Through his platform, HearsDustin, he advocates for accessible and inclusive experiences, collaborating with brands and organizations to create a world where everyone, regardless of hearing ability, can thrive.
- Follow Dustin on Instagram
- Visit Dustin’s Website
- Book an EmBRACE It Workshop
- Looking for more great tips, hacks, and blog posts? Visit: Trend-Able.com
- Find more on Charcot-Marie-Tooth (CMT) and patient resources at: HNF-cure.org
- Follow us on IG! @embraceit_podcast | @trend.able | @cmtwegotthis
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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 1 (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 3 (00:26):
Hi, I'm Lainey and I have CMT.
I'm a neuro-muscular disorderaffecting approximately 2.6
million people worldwide.
Speaker 2 (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 3 (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 2 (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.
Hi, hi there, dustin, nice tomeet you again.
Speaker 4 (01:35):
I know you too so excited to be here.
It was so good to meet you bothat the Runway of Dreams.
Just an incredible event.
Speaker 2 (01:42):
Yeah, it truly was.
And for those of you guys whoare listening who have no clue
what we're talking about, reachout to Estella and I and we'll
send you the awesome video thatshows Dustin modeling, which
we're going to get into in a bit, but I'll let Estella introduce
you.
You guys, if you're truly ahandsome dude too, we have to
(02:04):
really put a lot of his photosup.
Might get a lot of newlisteners.
What are they doing?
Got the Embrace it podcast?
I appreciate it.
Is it my eyes?
Speaker 4 (02:12):
Is it my scruffy beard?
Speaker 2 (02:18):
I'm married.
You're way too young for me andyou're newly married, so
congratulations.
I heard Thank you.
Speaker 4 (02:26):
Yes, we are very happy, so I appreciate it.
Speaker 3 (02:29):
A Breeze to newlywed a model, a deaf motivational
speaker and inclusivity andaccessibility advocate.
So maybe we can start with howyou entered the disability
community, what that kind ofdiagnosis journey was for you
and your family.
How did little Dustin grow intothis powerful disability
(02:52):
advocate that we have with ustoday?
Speaker 4 (02:54):
Thank you.
Well, it was around the age offive where preschool,
kindergarten, right we had thoseschool nurse hearing exams and
one year I passed, no problem.
The second year they put aboard up in between all the
students and the nurse and Irealized in line, oh, I'm not
(03:16):
going to be able to lip read.
But I didn't really realize Iwas lip reading until this
moment.
I naturally did what I had todo to succeed and communicate
and hearing loss wasn't in myfamily, so I didn't even know I
(03:37):
was deaf.
And when I went up to the tableand I realized very quickly I
couldn't hear any of the wordsthe nurse was saying you know,
ice cream, baseball outside, allthese words that they would say
and repeat after me I failed.
And then when they went topress the button and you're
supposed to raise your hand,what I did the previous year is
(03:57):
I saw them move their arm whenthey pressed the button Clever.
So now I don't have any ofthose advantages and showing off
.
They called my mom and theysaid I think your son is deaf
and she said what Unintendedright she.
No one in my family knew.
Speaker 2 (04:18):
If we can pause for just a minute, I want to fully
comprehend this.
So you basically assimilatedinto your environment and picked
up everything that was neededto.
Even your parents didn't knowthat you had hearing loss and
like at all.
You didn't know how toarticulate that, you didn't care
(04:40):
to articulate that, you justdid what you'd always done.
Is that?
What is that what I'm hearing?
That's correct.
Speaker 4 (04:46):
Yeah, yeah, that's incredible.
And nowadays especially, Ialways give a lot of credit back
to my grandfather, who helpedraise my brother and I with my
parents for working, and youknow my grandparents were always
there for us.
My grandfather was a doubleamputee.
So when he was in his midtwenties he got in a boating
(05:07):
accident and he had a hook and awooden leg and so he normalized
.
What a disability, what ahandicap in my eyes really was.
So when I started losing myhearing because it was a gradual
loss over the course of fromfive to about 13 years old, I
kept losing my hearing and itfinally stabilized in the
(05:31):
profound level, which is themost significant loss you can
have.
And I just you know I wassupported by my family that to
me it was just a hearing aidthat helped me hear, just like
glasses help you see.
And I used this new technology.
I thought it was cool.
(05:52):
My friends thought it was coolbecause I said it was cool.
Speaker 3 (05:55):
Oh yes, Trendsetter.
Speaker 4 (05:58):
Yeah, so and that was it.
You know, I just always didwhat I had to do to succeed.
I had a teacher of the deaf.
You know that was my note taker.
She helped me with assignmentsand studying for exams and
things like that.
I had different types ofaccommodations in school and
(06:19):
academically.
Speaker 3 (06:21):
So can I ask what is the cause of your deafness?
Were they able to diagnose thereason behind it?
Was it genetic?
Speaker 4 (06:29):
It's still a theory where we think it's from
chickenpox.
So a virus, a virus, right.
And I had a very severe casearound my my face and my ears
and over time I would just keeplosing my hearing and then I
just started losing more andmore and more and I think it was
(06:52):
just a delay effect and mymother always said with the
doctor and then they came to anagreement about it, but it's
never been really proven.
I know there are some studiesnow that bio genetic testing to
better understand the cause.
So we're looking into finallyfiguring it out, hopefully soon.
Speaker 2 (07:15):
I'm just so curious.
So we've had people on who wereblind and they cleared up
stereotypes or assumptions thatsomeone literally can't see a
thing Like.
So some of the people we've hadon the woman from bold beauty
I'm forgetting her name as anexample she was like no, it's
(07:37):
not, like it's totally dark forme, I see some shadows.
When you say is it the samething apply with deafness, where
you like don't hear anything orthings are muzzled, or is it
defined as?
I don't know what is deaf,defined as?
Speaker 4 (07:55):
So without my hearing aids?
I have a.
Well, I have a high pitchfrequency hearing loss in the
profound level.
So what that means is withoutmy hearing aids, which what they
do is they amplify sounds.
Right, they don't necessarilyhelp with speech clarity, so
it's still difficult to hearwhat people are saying without
(08:17):
reading lips.
But without them I don't hearany high pitches.
So, bells, whistles, alarms,birds chirping, a lot of babies
crying, whining, sometimeswomen's voices that are higher
pitched, that alarm today, thenational emergency test, that
(08:41):
was so loud to me.
I was in the middle of a zoomcall with another client and I
didn't know where this.
I knew it was coming at somepoint today.
I forgot about it and I was ina hotel lobby.
So there was some noise overthere and I was like what is
happening?
Is that me or you?
And sure enough it was from myphone and my phone was face down
(09:04):
so I didn't see the alert.
But those types of noises Idon't hear at all without the
hearing aids on.
When they're on, they'reamplified.
Speaker 3 (09:15):
So it's more of a.
It's a spectrum, right, because, like Lainey said, it's not
that you cannot hear anything,it's a certain profile of sound
that you're not able to process.
So I think clarifying thatscale of disability is always
important for us to kind of diveinto.
(09:36):
Going back to young Dustin,right, you were fitted with the
hearing aids.
How did you obviously seem likea very happy kid and adaptive.
What were some of those kind ofchallenges that you had to
navigate as a young child,socially, into your teenage
(09:59):
years, into adulthood, dating,all of that fun stuff.
Speaker 4 (10:03):
It's a great question and topic.
Well, first, I give a lot ofcredit to my mom who drove me
back and forth, back and forthto the audiologist to make
changes in the settings everyweek and each time I went I was
hearing new noises and it wastoo loud.
There was a lot of stimulation.
(10:25):
So we made a lot of changesthat took some time to get used
to.
Academically and socially, Iwas lucky.
I had an older brother who kindof set the tone for me, and in
school everybody knew our familyand the reputation we had, that
we were good people and mybrother was a class president.
(10:46):
So growing up over the years hehad a great reputation and we
were both athletes.
So on and off the basketballcourt, the soccer field, people
knew who we were.
We were hard workers and thathelped a ton too.
In regards to my dating life,right, I was a late bloomer, Not
(11:07):
because of my hearing loss asmuch, but maybe confidence.
I didn't know how to reallyshow the confidence that I had
because I don't know that peopleunderstood how difficult life
can be with a disability.
And when you look at me,especially over the screen, you
(11:28):
don't even see my hearing aids.
You don't know that I'm lipreading intentionally, you don't
know that I have captions onand you don't know that my
hearing aids have Bluetooth, andthat's what makes this
experience accessible for me.
But it's an invisibledisability that I have to
explain that to people, and whenI do, wow, that's impressive
right.
(11:48):
So I don't think I really fullyexplained how much I overcame
to get me to the point I amtoday, at a younger age.
Speaker 3 (12:02):
Were there times where you had to really learn
how to advocate for yourself inthose situations where maybe you
were being discriminatedagainst or left out, and what
were some of those situationslike?
Speaker 4 (12:18):
I remember being at a family event at a Balmitzva and
I was about seven or eight, soa couple of years new into being
deaf and all the 13 year oldboys were all at the kid tables
and they started pointing at myhearing aids and calling me
Balunias and I didn't hear it.
(12:39):
It was when my brother told meand I immediately just started
crying and they got a good kickout of it.
But back in those days myhearing aids were big right,
they were large, covered thewhole ear.
Now they're pretty sleek andmodern and cool technology.
But back then it took some timeto get used to and every once
(13:02):
in a blue moon I would quote bemade fun of.
But I always set the tone wherethese are just cool pieces of
technology that helped me hear,like Glasses, lpc, and I can
still count on two hands howmany times I was ever made fun
of.
Speaker 3 (13:20):
But I love what you said about your parents being
very proactive in making surethat they were always kind of
like through the process oftrial and error.
There's my New York accentcoming out Fine tuning your
hearing aids, and I think thatthat can be applied to all types
(13:41):
of mobility aids and devices,that it's not a one size fits
all.
I mean with Leany and I as faras braces and just in that
category alone, just the trialand error and testing out what
works, what doesn't work, can beexhausting.
(14:01):
But I think it's important notto give up and to always be
advocating for what feels good,what works good, what doesn't
work good.
But I wanted to shift things alittle bit back to the deaf
community.
Can you share a little bitabout how really large this
demographic of people is?
And also I'd love to talk aboutASL and the differences in the
(14:28):
ASL community within the deafcommunity, cause I know there's
a lot of nuance there as well.
Speaker 4 (14:35):
So there's 50 million Americans that are deaf or hard
of hearing, and that's a hugepopulation.
That's about 14% of the countrythat is deaf or hard of hearing
affected by hearing loss.
In the world, there's 432million people that are affected
by hearing loss.
That's even more of apercentage of the world.
So it's growing by 2050.
(14:59):
That number is gonna go up to700 million.
So now is the time to reallywhich is what we're doing bring
awareness and find more and moresolutions for people that are
affected by hearing loss.
And there's another percentageof people that don't actually
get the help they need.
Whether it's hearing aids, acochlear implant, any sort of
(15:22):
solution, whether it's assistivetechnology or not, they're not
getting the help they need,whether it's because of finances
, confidence, you name it.
So now is really the time toencourage people to join this
community.
We're the most resilientcommunity we anybody's ever met.
That goes for a whole thedisability community.
(15:46):
I'll be the first to talk aboutmental health.
Not easy, and life is not easyTo have a disability on top of
that.
Right, you know we've allaccomplished so much, so it's
really something to be proud of.
You should have one of us andall the listeners today you can
(16:06):
think of your own personalstories.
You know it's challenging, buthere we are today and we're
going to tomorrow and the nextday.
So you know it's all aboutbeing positive and carrying that
energy.
But you know, as far as thedeaf community capital, d deaf
versus lowercase D deaf right.
Speaker 2 (16:27):
What does that mean?
Capital D lower D.
Speaker 4 (16:31):
The capital D deaf is really deaf culture, right,
they rely mainly on ASL.
It's really their own communityof people that communicate with
sign language.
Out of that 48 million, it's amuch smaller percentage of
(16:52):
people that strictly utilizesign language.
Now, I've always been a verbalcommunicator.
My whole family, my friends,everybody has always, you know,
been hearing and.
But I also went to summer schoolfor the deaf many years as a
(17:13):
kid and I was acclimated I guessthe word would be with people
that relied on sign language andthat was a different community
than what I was used to, becauseI went to mainstream school and
it was during the summer and Irealized not only did I want to
(17:36):
play basketball every day duringthe summer, but I felt like it
wasn't the community I reallyassociated myself with as much.
So I one year I said to my momhey, like you know, I don't
think this is my community, ifyou will.
And she said, ok, no problem,just wanted you to know that
(17:59):
they are a community that's outthere and there for you at any
point in your life.
And that was a very powerfulkind of moment with my mom where
she just understood me and sheknew I wanted to play basketball
and she knew that I wassurrounded by.
Speaker 3 (18:20):
You know the hearing world, so I can imagine, to that
, not knowing the reason behindyour deafness, there was
probably always this fear of itprogressing, and so that, by you
know, exposing you to thatexperience of summer camp and to
ASL, it was kind of just likeyou know if it, if there's a
(18:44):
point in your life where youhave to rely on ASL in order to
communicate that thatintroduction was made as early
as possible to give you thatconfidence and that sense of
community.
Speaker 4 (18:56):
And later on in life.
So in college I took her classan old girlfriend at the time.
She was a speech pathologymajor and I decided I'll take a
fourth class, even though Ididn't need to.
But let it be known, I got an Aand she got a B plus.
But you know it was fun and Ireally got to learn.
(19:22):
And of course, like anylanguage, if you don't practice
every day you lose a lot of it.
But lately, as you saw, at therunway of dreams I met some
people that were deaf andsigning and it comes back to you
pretty quickly.
But if it's not something youpractice and use every day, you
certainly forget a lot.
Speaker 3 (19:42):
I've been, I've been seeing just in more mainstream
media and more obviously withthe representation of the deaf
community and disability atlarge.
I love a show called NewAmsterdam and on that show
there's a surgeon who'scompletely deaf and mute and she
signs to do, you know, thesurgery and she's just another
(20:07):
incredible character on the show.
But I'm, it really is.
For me, as somebody with adisability is normalizing it
even more and it's so excitingto see movies like Koda and all
of these real, authenticrepresentations of the deaf
community in our culture now.
Speaker 4 (20:30):
And we need more of that right, there's under 5% of
actors and actresses showing adisability and a lot of that
percentage is actually played bypeople without a disability.
So the authentic representationis so important, especially for
(20:50):
kids that have disabilities.
You know, I want children tolook up to me you all of us that
actually have the samedisability and they show that
it's an ability that we can beactors and actresses, we can be
comedians, we can be whatever wewant.
Speaker 2 (21:12):
So I'm going to have a question that may not be
politically correct, but when amI?
I don't even know if that's aterm anymore, but it doesn't
matter.
I'm just so curious.
Like your speaking voice, oh,like it's sound, you could be
like someone wouldn't know thatyou are deaf from your voice.
(21:37):
You know necessarily.
Whereas, when we talk aboutwhat's your name in that movie,
you just mentioned Koda, theshow.
Well, anybody like a lot of.
Yeah, like you know, you noticesome people's voices and is that
because, like, well, let me askyou for you.
(22:00):
Is it because it's such a youngage?
You accommodated and modeledand used your voice and didn't
stop?
Is it because people have beensigning and that's what they're
used to and they never used it?
Like, why, how, why is thevoice impacted with?
Speaker 4 (22:16):
hearing.
It's a combination of things,and part of my accommodations
that my mother advocated for wasspeech therapy, and so at a
young age although again atrecess, I wanted to play
basketball they called me in atthe end of recess every day, or
however many three days of theweek, to do speech therapy.
(22:40):
As much as I did not love it, Idid what I had to do and
thankfully the therapist was sonice, Mrs Murphy, and you know I
did, I did great and I gotcandy at the end.
The other kids didn't get candy, you know, but I made sure that
(23:02):
I gave it a good effort.
And my teacher of the deaf wasalso Mrs Burke, but we still
keep in touch.
She was the speech police, so ifI got lazy she would say what
was that?
You know?
Say that again, and then Iwould enunciate a little bit
(23:22):
more, right?
So I was always, you know,making sure that I gave the
appropriate effort.
Also, I had hearing before Ilost it, so that definitely
helped to hear the sounds, theway that they have been spoken.
The people that are deaf, theymight not hear those sounds as
(23:47):
clearly as some of us do, andthey're not.
Maybe if they're mute theydon't speak as much as because
they're communicating via sign.
they don't know what it reallysounds like, and maybe we don't
hear our voices the same waythat a hearing person hears
their voices.
So there's a lot that goes intoit.
Speaker 2 (24:08):
Yeah, and I was thinking that too I'm like, oh
my God, every time I Estella'slike, did you listen to our
podcast?
Like this podcast, I'm like Idon't want to hear my voice ever
because it sounds when, youknow, for people most people
their voice sounds so differentwhen they hear their own voice
from what they think it soundslike right, like it's so not
(24:30):
what I want it to be, so I don'twant to hear it.
But obviously you don't want totake that for granted, right?
But I would imagine that partof it, too, is practice, and if
you don't use it, like withclimbing stairs, if you're able
to, if you stop doing it, youlose the ability to do it.
So the more you do something,the better you get at it, right?
Speaker 3 (24:50):
That's what I was going to compare it to.
Like your speech therapy waslike my PT in school, like I
hated being pulled out to do itand it was boring and it was
annoying but I'm glad you knowand that's those things that we
need to make sure that we arepreparing ourselves and the
self-care element of disability.
Speaker 1 (25:14):
We'll be right back.
Speaker 6 (25:19):
This is George Fred and Jason, the co-leaders of
Speak, interrupting to say thatwe hope you're enjoying this
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New episodes available everyweek on all of your favorite
(25:43):
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Speaker 5 (25:45):
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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You're tuning in to embrace it with Laini Anastella,
brought to you by Launchpad 516Studios.
Speaker 2 (26:31):
Hi, hi there, Dustin, nice to meet you again.
Speaker 4 (26:36):
I know you too so excited to be here.
It was so good to meet you bothat the Runway of Dreams.
Just an incredible event.
Speaker 2 (26:44):
Yeah, it truly was.
And for those of you guys whoare listening who have no clue
what we're talking about, reachout to Estella and I and we'll
send you the awesome video thatshows Dustin modeling, which
we're gonna get into in a bit,but I'll let Estella introduce
you.
You guys, it's truly a handsomedude too.
(27:04):
We have to really put a lot ofhis photos up.
Might get a lot of newlisteners.
What are they doing?
Got the Embrace it podcast.
Speaker 4 (27:13):
I appreciate it.
Is it my eyes?
Is it my scruffy beard?
Speaker 2 (27:20):
I'm married.
You're way too young for me andyou're newly married, so
congratulations.
I heard Thank you.
Speaker 4 (27:26):
yes, we're very happy , so I appreciate it.
Speaker 3 (27:30):
A Brixton, newlywed a model, a deaf motivational
speaker and inclusive andaccessibility advocate.
So maybe we can start with howyou entered the disability
community, what that kind ofdiagnosis journey was for you
and your family.
How did little Dustin grow intothis powerful disability
(27:53):
advocate that we have with ustoday?
Speaker 4 (27:56):
Thank you.
Well, it was around the age offive where preschool,
kindergarten, right we had thoseschool nurse hearing exams and
one year I passed, no problem.
The second year they put aboard up in between all the
students and the nurse and Irealized in line, oh, I'm not
(28:18):
gonna be able to lip read.
But I didn't really realize Iwas lip reading until this
moment.
I naturally did what I had todo to succeed and communicate,
and hearing loss wasn't in myfamily, so I didn't even know I
(28:38):
was deaf.
And when I went up to the tableand I realized very quickly I
couldn't hear any of the wordsthe nurse was saying you know,
ice cream, baseball outside allthese words that they would say
and repeat after me I failed.
And then, when they went topress the button and you're
supposed to raise your hand,what I did the previous year is
(28:59):
I saw them move their arm whenthey pressed the button.
Speaker 3 (29:03):
Clever.
Speaker 4 (29:04):
So now I don't have any of those advantages and
showing off.
They called my mom and theysaid I think your son is deaf.
And she said what Unintendedright she?
No one in my family knew.
Speaker 2 (29:19):
If we can pause for just a minute, I wanna fully
comprehend this.
So you basically assimilatedinto your environment and picked
up everything that was neededto.
Even your parents didn't knowthat you had hearing loss and
like at all.
You didn't know how toarticulate that.
(29:40):
You didn't care to articulatethat, you just did what you'd
always done.
Is that what I'm hearing?
That's correct.
Speaker 4 (29:47):
Yeah, yeah, that's incredible.
That's incredible and nowadaysespecially, I always give a lot
of credit back to my grandfather, who helped raise my brother
and I, and my parents wereworking and my grandparents were
always there for us.
My grandfather was a doubleamputee, so when he was in his
mid twenties he got in a boatingaccident and he had a hook and
(30:10):
a wooden leg and so henormalized.
What a disability, what ahandicap in my eyes, really was.
So when I started losing myhearing because it was a gradual
loss over the course of fromfive to about 13 years old, I
kept losing my hearing and itfinally stabilized in the
(30:32):
profound level, which is themost significant loss you can
have, and I just I was supportedby my family that to me it was
just a hearing aid that helpedme hear, just like glasses help
you see.
And I used this new technology.
I thought it was cool.
(30:53):
My friends thought it was coolbecause I said it was cool.
Speaker 3 (30:57):
Oh yes, trendsetter.
Speaker 4 (30:59):
Yeah, so, and that was it.
I just always did what I had todo to succeed.
I had a teacher of the deafthat was my note taker.
She helped me with assignmentsand studying for exams and
things like that.
I had different types ofaccommodations in school and
(31:20):
academically.
Speaker 3 (31:22):
So can I ask what is the cause of your deafness?
Were they able to diagnose thereason behind it?
Was it genetic?
Speaker 4 (31:30):
It's still a theory where we think it's from
chickenpox.
So a virus, a virus, right.
And I had a very severe casearound my face and my ears and
over time I would just keeplosing my hearing and then I
just started losing more andmore and more and I think it was
(31:53):
just a delay effect and mymother always said with the
doctor and then they came to anagreement about it, but it's
never been really proven.
I know there are some studiesnow that bio genetic testing to
better understand the cause.
So we're looking into finallyfiguring it out, hopefully soon.
Speaker 2 (32:17):
I'm just so curious.
So we've had people on who wereblind and they cleared up
stereotypes or assumptions thatsomeone literally can't see a
thing Like.
So some of the people we've hadon the woman from bold beauty
I'm forgetting her name as anexample she was like no, it's
(32:38):
not, like it's totally dark forme, I see some shadows.
When you say is it the samething apply with deafness, where
you like don't hear anything orthings are muzzled, or is it
defined as?
I don't know what is deaf,defined as?
Speaker 4 (32:56):
So without my hearing aids I have a high pitch
frequency hearing loss in theprofound level.
So what that means is withoutmy hearing aids, which what they
do is they amplify sounds.
Right, they don't necessarilyhelp with speech clarity, so
it's still difficult to hearwhat people are saying without
(33:18):
reading lips.
But without them I don't hearany high pitches.
So bells, whistles, alarms,burge, chirping, a lot of babies
crying, whining, sometimeswomen's voices that are higher
pitched, that alarm today, thenational emergency test that was
(33:42):
so loud to me.
I was in the middle of a Zoomcall with another client and I
didn't know where this.
I knew it was coming at somepoint today.
I forgot about it and I was ina hotel lobby.
So there was some noise overthere and I was like what is
happening?
Is that me or you?
And sure enough it was from myphone and my phone was face down
(34:06):
so I didn't see the alert.
But those types of noises Idon't hear at all without the
hearing aids on.
When they're on, they'reamplified.
Speaker 3 (34:17):
So it's more of a.
It's a spectrum, right, because, like Lainey said, it's not
that you cannot hear anything,it's a certain profile of sound
that you're not able to process.
So I think you know, clarifyingthat scale of disability is
always important for us to kindof dive into.
(34:37):
Going back to young Dustin,right, you were fitted with the
hearing aids.
How did you obviously seem likea very happy kid and adaptive.
What were some of those kind ofchallenges that you had to
navigate as a young child,socially, into your teenage
(35:00):
years, into adulthood, dating,all of that fun stuff.
Speaker 4 (35:04):
It's a great question and topic you know Well.
First, I give a lot of creditto my mom who drove me back and
forth, back and forth to theaudiologist to make changes in
the settings every week and eachtime I went I was hearing new
noises and it was too loud.
There was a lot of stimulation.
(35:26):
So we made a lot of changesthat took some time to get used
to.
Academically and socially, Iwas lucky.
I had an older brother who kindof set the tone for me, and in
school everybody knew our familyand the reputation we had and
you know that we were goodpeople and my brother was a
(35:47):
class president.
So growing up over the years hehad a great reputation and we
were both athletes.
So on and off the basketballcourt, the soccer field, people
knew who we were.
We were hard workers and thathelped a ton too.
In regards to my dating life,right, I was a late bloomer, not
(36:08):
because of my hearing loss asmuch, but maybe confidence.
I didn't know how to reallyshow the confidence that I had
because I don't know that peopleunderstood how difficult life
can be with a disability andwhen you look at me, especially
(36:28):
over the screen, you don't evensee my hearing aids.
You don't know that I'm lipreading intentionally.
You don't know that I havecaptions on and you don't know
that my hearing aids haveBluetooth, and that's what makes
this experience accessible forme.
But it's an invisibledisability that I have to
explain that to people and whenI do, wow, that's impressive,
(36:49):
right.
So I don't think I really fullyexplained how much I overcame
to get me to the point I amtoday, at a younger age.
Speaker 3 (37:03):
Were there times where you had to really learn
how to advocate for yourself inthose situations where maybe you
were being discriminatedagainst or left out, and what
were some of those situationslike?
Speaker 4 (37:19):
I remember being at a family event at a Balmitzva and
I was about seven or eight, soa couple of years new into being
deaf and all the 13 year oldboys were all at the kid tables
and they started pointing at myhearing aids and calling me
Balunius and I didn't hear it.
(37:41):
It was when my brother told meand I immediately just started
crying and they got a good kickout of it.
But back in those days myhearing aids were big right,
they were large, covered thewhole ear.
Now they're pretty sleek andmodern and cool technology.
But back then it took some timeto get used to and every once
(38:03):
in a blue moon I would quote bemade fun of.
But I always set the tone wherethese are just cool pieces of
technology that helped me hear,like Glasses, lpc, and I can
still count on two hands howmany times I was ever made fun
of.
Speaker 3 (38:21):
But I love what you said about your parents being
very proactive in making surethat they were always kind of
like through the process oftrial and error.
There's my New York accentcoming out Fine tuning your
hearing aids, and I think thatthat can be applied to all types
(38:43):
of mobility aids and devices,that it's not a one size fits
all.
I mean with Leany and I as faras braces and just in that
category alone, just the trialand error and testing out what
works, what doesn't work, can beexhausting.
But I think it's important notto give up and to always be
(39:07):
advocating for what feels good,what works good, what doesn't
work good.
But I wanted to shift things alittle bit back to the deaf
community.
Can you share a little bitabout how really large this
demographic of people is?
And also I love to talk aboutASL and the differences in the
(39:30):
ASL community within the deafcommunity, cause I know there's
a lot of nuance there as well.
Speaker 4 (39:36):
So there's 50 million Americans that are deaf or hard
of hearing, and that's a hugepopulation.
That's about 14% of the countrythat is deaf or hard of hearing
affected by hearing loss.
In the world, there's 432million people that are affected
by hearing loss.
That's even more of apercentage of the world.
So it's growing by 2050.
(40:00):
That number is gonna go up to700 million.
So now is the time to reallywhich is what we're doing bring
awareness and find more and moresolutions for people that are
affected by hearing loss.
And there's another percentageof people that don't actually
get the help they need.
Whether it's hearing aids, acochlear implant, any sort of
(40:23):
solution, whether it's assistivetechnology or not, they're not
getting the help they need,whether it's because of finances
, confidence, you name it.
So now is really the time toencourage people to join this
community.
We're the most resilientcommunity we anybody's ever met.
That goes for a whole thedisability community.
(40:47):
I'll be the first to talk aboutmental health.
It's not easy and life is noteasy, and to have a disability
on top of that.
Right, you know we've allaccomplished so much, so it's
really something to be proud of.
You should have one of us andall the listeners today you can
(41:07):
think of your own personalstories.
You know it's challenging, buthere we are today and we're
going to tomorrow and the nextday.
So you know it's all aboutbeing positive and carrying that
energy.
But you know, as far as thedeaf community, capital D deaf
versus lowercase D deaf right.
Speaker 2 (41:28):
What does that mean?
Capital D lower D.
Speaker 4 (41:32):
The capital D deaf is really deaf culture, right,
they rely mainly on ASL.
It's really their own communityof people that communicate with
sign language.
Out of that 48 million, it's amuch smaller percentage of
(41:53):
people that strictly utilizesign language.
Now, I've always been a verbalcommunicator.
My whole family, my friends,everybody has always, you know,
been hearing and.
But I also went to summer schoolfor the deaf many years as a
(42:14):
kid and I was acclimented Iguess the word would be with
people that relied on signlanguage and that was a
different community than what Iwas used to, because I went to
mainstream school and it wasduring the summer and I realized
(42:35):
not only did I want to playbasketball every day during the
summer, but I felt like itwasn't the community I really
associated myself with as much.
So I one year I said to my momhey, like you know, I don't
think this is my community, ifyou will.
(42:55):
And she said, okay, no problem,just wanted you to know that
they are a community that's outthere and there for you at any
point in your life.
And that was a very powerfulkind of moment with my mom where
she just understood me and sheknew I wanted to play basketball
(43:17):
and she knew that I wassurrounded by you know the
hearing world.
Speaker 3 (43:24):
So I can imagine to you that, not knowing the reason
behind your deafness, there wasprobably always this fear of it
progressing, and so that by youknow, exposing you to that
experience of summer camp and toASL, it was kind of just like
you know if it, if there's apoint in your life where you
(43:46):
have to rely on ASL in order tocommunicate that that
introduction was made as earlyas possible to give you that
confidence and that sense ofcommunity.
Speaker 4 (43:57):
And later on in life.
So in college I took her classan old girlfriend at the time.
She was a speech pathologymajor and I decided I'll take a
fourth class, even though Ididn't need to.
But let it be known, I got an Aand she got a B plus.
But you know it was fun and Ireally got to learn.
(44:24):
And of course, like anylanguage, if you don't practice
every day you lose a lot of it.
But lately, as you saw, at therunway of dreams I met some
people that were deaf andsigning and it comes back to you
pretty quickly.
But if it's not something youpractice and use every day, you
certainly forget a lot.
Speaker 3 (44:44):
I've been, I've been seeing just in more mainstream
media and more obviously withthe representation of the deaf
community and disability atlarge.
I love a show called NewAmsterdam and on that show
there's a surgeon who'scompletely deaf and mute and she
signs to do, you know, thesurgery and she's just another
(45:08):
incredible character on the show.
But it really is, for me, assomebody with a disability, is
normalizing it even more andit's so exciting to see movies
like Koda and all of these real,authentic representations of
the deaf community in ourculture now.
Speaker 4 (45:31):
And we need more of that right.
It is under 5% of actors andactresses are showing a
disability and a lot of thatpercentage is actually played by
people without a disability.
So the authentic representationis so important, especially for
(45:52):
kids that have disabilities.
You know, I want children tolook up to me you all of us that
actually have the samedisability and they show that
it's an ability that we can beactors and actresses, we can be
comedians, we can be whatever wewant.
Speaker 2 (46:13):
So I'm gonna have a question that may not be
politically correct, but when amI?
I don't even know if that's aterm anymore, but it doesn't
matter.
I'm just so curious.
Like your speaking voice, oh,like it sounds, you could be
like someone wouldn't know thatyou are deaf from your voice.
(46:38):
You know necessarily, right,yes, whereas when we talk about
what's your name in that movie,you just mentioned Koda the show
.
Speaker 4 (46:49):
Well, anybody like a lot of.
Speaker 2 (46:51):
Yeah, like you know, you notice some people's voices
and is that because, like, well,let me ask you for you.
Is it because it's such a youngage?
You accommodated and modeledand used your voice and didn't
stop?
Is it because people have beensigning and that's what they're
used to and they never used it?
(47:13):
Like, why, how, why is thevoice impacted with?
Speaker 4 (47:18):
hearing.
It's a combination of things,and part of my accommodations
that my mother advocated for wasspeech therapy, and so at a
young age although again atrecess I wanted to play
basketball they called me in atthe end of recess every day, or
however many three days of theweek, to do speech therapy.
(47:41):
As much as I did not love it, Idid what I had to do and
thankfully the therapist was sonice, Mrs Murphy, and you know I
did great and I got candy atthe end.
The other kids didn't get candy, you know, but I made sure that
(48:03):
I gave it a good effort.
And my teacher of the deaf wasalso Mrs Burke, but we still
keep in touch.
She was the speech police, so ifI got lazy she would say what
was that?
You know, say that again, andthen I would enunciate a little
bit more, right?
(48:24):
So I was always, you know,making sure that I gave the
appropriate effort.
Also, I had hearing before Ilost it, so that definitely
helped to hear the sounds, theway that they have been spoken
For people that are deaf.
(48:44):
They might not hear thosesounds as clearly as some of us
do, and they're not.
Maybe if they're mute theydon't speak as much as because
they're communicating via sign.
They don't know what it reallysounds like, and maybe we don't
hear our voices the same waythat a hearing person hears
(49:06):
their voices.
So there's a lot that goes intoit.
Speaker 2 (49:09):
Yeah, and I was thinking that too I'm like, oh
my God, every time I Estella'slike, did you listen to our
podcast?
Like this podcast, I'm like Idon't want to hear my voice ever
because it sounds when, youknow, for people most people
their voice sounds so differentwhen they hear their own voice
from what they think it soundslike right, like it's so not
(49:32):
what I want it to be, so I don'twant to hear it.
But obviously you don't want totake that for granted, right?
But I would imagine that partof it, too, is practice, and if
you don't use it, like withclimbing stairs, if you're able
to, if you stop doing it, youlose the ability to do it.
So the more you do something,the better you get at it, right?
Speaker 3 (49:52):
That's what I was going to compare it to.
Like your speech therapy waslike my PT in school, Like I
hated being pulled out to do itand it was boring and it was
annoying, but I'm glad you knowand it's those things that we
need to make sure that we arepreparing ourselves and the
self-care element of disability.
(50:13):
Hey, Embracers, thank you somuch for listening and
supporting the Embracid podcastBrought to you by Launchpad 516
Studios executive, produced byGeorge Andriopoulos and hosted
by Laini Ispia and Estella Hugo.
Our music and sound effects arelicensed through Epidemic Sound
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Embracid is hosted withBuzzsprout.
Speaker 2 (50:32):
Do you have a disability related topic you'd
love for us to feature, or couldsomeone you know be a fabulous
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We would love to hear yourcomments and feature them on our
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Speaker 3 (50:53):
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Speaker 2 (51:08):
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 3 (00:26):
Hi, I'm Lainey and I have CMT.
I'm a neuro-muscular disorderaffecting approximately 2.6
million people worldwide.
Speaker 2 (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 3 (00:52):
each episode is designed to challenge your own
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We want our listeners to getthe most value for their time
spent with us, so we interviewsome of the most empowering
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Through storytelling, personalexperiences and tips, we're all
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Speaker 2 (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.
Hi, hi there, dustin, nice tomeet you again.
Speaker 4 (01:35):
I know you too so excited to be here.
It was so good to meet you bothat the Runway of Dreams.
Just an incredible event.
Speaker 2 (01:42):
Yeah, it truly was.
And for those of you guys whoare listening who have no clue
what we're talking about, reachout to Estella and I and we'll
send you the awesome video thatshows Dustin modeling, which
we're going to get into in a bit, but I'll let Estella introduce
you.
You guys, if you're truly ahandsome dude too, we have to
(02:04):
really put a lot of his photosup.
Might get a lot of newlisteners.
What are they doing?
Got the Embrace it podcast?
I appreciate it.
Is it my eyes?
Speaker 4 (02:12):
Is it my scruffy beard?
Speaker 2 (02:18):
I'm married.
You're way too young for me andyou're newly married, so
congratulations.
I heard Thank you.
Speaker 4 (02:26):
Yes, we are very happy, so I appreciate it.
Speaker 3 (02:29):
A Breeze to newlywed a model, a deaf motivational
speaker and inclusivity andaccessibility advocate.
So maybe we can start with howyou entered the disability
community, what that kind ofdiagnosis journey was for you
and your family.
How did little Dustin grow intothis powerful disability
(02:52):
advocate that we have with ustoday?
Speaker 4 (02:54):
Thank you.
Well, it was around the age offive where preschool,
kindergarten, right we had thoseschool nurse hearing exams and
one year I passed, no problem.
The second year they put aboard up in between all the
students and the nurse and Irealized in line, oh, I'm not
(03:16):
going to be able to lip read.
But I didn't really realize Iwas lip reading until this
moment.
I naturally did what I had todo to succeed and communicate
and hearing loss wasn't in myfamily, so I didn't even know I
(03:37):
was deaf.
And when I went up to the tableand I realized very quickly I
couldn't hear any of the wordsthe nurse was saying you know,
ice cream, baseball outside, allthese words that they would say
and repeat after me I failed.
And then when they went topress the button and you're
supposed to raise your hand,what I did the previous year is
(03:57):
I saw them move their arm whenthey pressed the button Clever.
So now I don't have any ofthose advantages and showing off
.
They called my mom and theysaid I think your son is deaf
and she said what Unintendedright she.
No one in my family knew.
Speaker 2 (04:18):
If we can pause for just a minute, I want to fully
comprehend this.
So you basically assimilatedinto your environment and picked
up everything that was neededto.
Even your parents didn't knowthat you had hearing loss and
like at all.
You didn't know how toarticulate that, you didn't care
(04:40):
to articulate that, you justdid what you'd always done.
Is that?
What is that what I'm hearing?
That's correct.
Speaker 4 (04:46):
Yeah, yeah, that's incredible.
And nowadays especially, Ialways give a lot of credit back
to my grandfather, who helpedraise my brother and I with my
parents for working, and youknow my grandparents were always
there for us.
My grandfather was a doubleamputee.
So when he was in his midtwenties he got in a boating
(05:07):
accident and he had a hook and awooden leg and so he normalized
.
What a disability, what ahandicap in my eyes really was.
So when I started losing myhearing because it was a gradual
loss over the course of fromfive to about 13 years old, I
kept losing my hearing and itfinally stabilized in the
(05:31):
profound level, which is themost significant loss you can
have.
And I just you know I wassupported by my family that to
me it was just a hearing aidthat helped me hear, just like
glasses help you see.
And I used this new technology.
I thought it was cool.
(05:52):
My friends thought it was coolbecause I said it was cool.
Speaker 3 (05:55):
Oh yes, Trendsetter.
Speaker 4 (05:58):
Yeah, so and that was it.
You know, I just always didwhat I had to do to succeed.
I had a teacher of the deaf.
You know that was my note taker.
She helped me with assignmentsand studying for exams and
things like that.
I had different types ofaccommodations in school and
(06:19):
academically.
Speaker 3 (06:21):
So can I ask what is the cause of your deafness?
Were they able to diagnose thereason behind it?
Was it genetic?
Speaker 4 (06:29):
It's still a theory where we think it's from
chickenpox.
So a virus, a virus, right.
And I had a very severe casearound my my face and my ears
and over time I would just keeplosing my hearing and then I
just started losing more andmore and more and I think it was
(06:52):
just a delay effect and mymother always said with the
doctor and then they came to anagreement about it, but it's
never been really proven.
I know there are some studiesnow that bio genetic testing to
better understand the cause.
So we're looking into finallyfiguring it out, hopefully soon.
Speaker 2 (07:15):
I'm just so curious.
So we've had people on who wereblind and they cleared up
stereotypes or assumptions thatsomeone literally can't see a
thing Like.
So some of the people we've hadon the woman from bold beauty
I'm forgetting her name as anexample she was like no, it's
(07:37):
not, like it's totally dark forme, I see some shadows.
When you say is it the samething apply with deafness, where
you like don't hear anything orthings are muzzled, or is it
defined as?
I don't know what is deaf,defined as?
Speaker 4 (07:55):
So without my hearing aids?
I have a.
Well, I have a high pitchfrequency hearing loss in the
profound level.
So what that means is withoutmy hearing aids, which what they
do is they amplify sounds.
Right, they don't necessarilyhelp with speech clarity, so
it's still difficult to hearwhat people are saying without
(08:17):
reading lips.
But without them I don't hearany high pitches.
So, bells, whistles, alarms,birds chirping, a lot of babies
crying, whining, sometimeswomen's voices that are higher
pitched, that alarm today, thenational emergency test, that
(08:41):
was so loud to me.
I was in the middle of a zoomcall with another client and I
didn't know where this.
I knew it was coming at somepoint today.
I forgot about it and I was ina hotel lobby.
So there was some noise overthere and I was like what is
happening?
Is that me or you?
And sure enough it was from myphone and my phone was face down
(09:04):
so I didn't see the alert.
But those types of noises Idon't hear at all without the
hearing aids on.
When they're on, they'reamplified.
Speaker 3 (09:15):
So it's more of a.
It's a spectrum, right, because, like Lainey said, it's not
that you cannot hear anything,it's a certain profile of sound
that you're not able to process.
So I think clarifying thatscale of disability is always
important for us to kind of diveinto.
(09:36):
Going back to young Dustin,right, you were fitted with the
hearing aids.
How did you obviously seem likea very happy kid and adaptive.
What were some of those kind ofchallenges that you had to
navigate as a young child,socially, into your teenage
(09:59):
years, into adulthood, dating,all of that fun stuff.
Speaker 4 (10:03):
It's a great question and topic.
Well, first, I give a lot ofcredit to my mom who drove me
back and forth, back and forthto the audiologist to make
changes in the settings everyweek and each time I went I was
hearing new noises and it wastoo loud.
There was a lot of stimulation.
(10:25):
So we made a lot of changesthat took some time to get used
to.
Academically and socially, Iwas lucky.
I had an older brother who kindof set the tone for me, and in
school everybody knew our familyand the reputation we had, that
we were good people and mybrother was a class president.
(10:46):
So growing up over the years hehad a great reputation and we
were both athletes.
So on and off the basketballcourt, the soccer field, people
knew who we were.
We were hard workers and thathelped a ton too.
In regards to my dating life,right, I was a late bloomer, Not
(11:07):
because of my hearing loss asmuch, but maybe confidence.
I didn't know how to reallyshow the confidence that I had
because I don't know that peopleunderstood how difficult life
can be with a disability.
And when you look at me,especially over the screen, you
(11:28):
don't even see my hearing aids.
You don't know that I'm lipreading intentionally, you don't
know that I have captions onand you don't know that my
hearing aids have Bluetooth, andthat's what makes this
experience accessible for me.
But it's an invisibledisability that I have to
explain that to people, and whenI do, wow, that's impressive
right.
(11:48):
So I don't think I really fullyexplained how much I overcame
to get me to the point I amtoday, at a younger age.
Speaker 3 (12:02):
Were there times where you had to really learn
how to advocate for yourself inthose situations where maybe you
were being discriminatedagainst or left out, and what
were some of those situationslike?
Speaker 4 (12:18):
I remember being at a family event at a Balmitzva and
I was about seven or eight, soa couple of years new into being
deaf and all the 13 year oldboys were all at the kid tables
and they started pointing at myhearing aids and calling me
Balunias and I didn't hear it.
(12:39):
It was when my brother told meand I immediately just started
crying and they got a good kickout of it.
But back in those days myhearing aids were big right,
they were large, covered thewhole ear.
Now they're pretty sleek andmodern and cool technology.
But back then it took some timeto get used to and every once
(13:02):
in a blue moon I would quote bemade fun of.
But I always set the tone wherethese are just cool pieces of
technology that helped me hear,like Glasses, lpc, and I can
still count on two hands howmany times I was ever made fun
of.
Speaker 3 (13:20):
But I love what you said about your parents being
very proactive in making surethat they were always kind of
like through the process oftrial and error.
There's my New York accentcoming out Fine tuning your
hearing aids, and I think thatthat can be applied to all types
(13:41):
of mobility aids and devices,that it's not a one size fits
all.
I mean with Leany and I as faras braces and just in that
category alone, just the trialand error and testing out what
works, what doesn't work, can beexhausting.
(14:01):
But I think it's important notto give up and to always be
advocating for what feels good,what works good, what doesn't
work good.
But I wanted to shift things alittle bit back to the deaf
community.
Can you share a little bitabout how really large this
demographic of people is?
And also I'd love to talk aboutASL and the differences in the
(14:28):
ASL community within the deafcommunity, cause I know there's
a lot of nuance there as well.
Speaker 4 (14:35):
So there's 50 million Americans that are deaf or hard
of hearing, and that's a hugepopulation.
That's about 14% of the countrythat is deaf or hard of hearing
affected by hearing loss.
In the world, there's 432million people that are affected
by hearing loss.
That's even more of apercentage of the world.
So it's growing by 2050.
(14:59):
That number is gonna go up to700 million.
So now is the time to reallywhich is what we're doing bring
awareness and find more and moresolutions for people that are
affected by hearing loss.
And there's another percentageof people that don't actually
get the help they need.
Whether it's hearing aids, acochlear implant, any sort of
(15:22):
solution, whether it's assistivetechnology or not, they're not
getting the help they need,whether it's because of finances
, confidence, you name it.
So now is really the time toencourage people to join this
community.
We're the most resilientcommunity we anybody's ever met.
That goes for a whole thedisability community.
(15:46):
I'll be the first to talk aboutmental health.
Not easy, and life is not easyTo have a disability on top of
that.
Right, you know we've allaccomplished so much, so it's
really something to be proud of.
You should have one of us andall the listeners today you can
(16:06):
think of your own personalstories.
You know it's challenging, buthere we are today and we're
going to tomorrow and the nextday.
So you know it's all aboutbeing positive and carrying that
energy.
But you know, as far as thedeaf community capital, d deaf
versus lowercase D deaf right.
Speaker 2 (16:27):
What does that mean?
Capital D lower D.
Speaker 4 (16:31):
The capital D deaf is really deaf culture, right,
they rely mainly on ASL.
It's really their own communityof people that communicate with
sign language.
Out of that 48 million, it's amuch smaller percentage of
(16:52):
people that strictly utilizesign language.
Now, I've always been a verbalcommunicator.
My whole family, my friends,everybody has always, you know,
been hearing and.
But I also went to summer schoolfor the deaf many years as a
(17:13):
kid and I was acclimated I guessthe word would be with people
that relied on sign language andthat was a different community
than what I was used to, becauseI went to mainstream school and
it was during the summer and Irealized not only did I want to
(17:36):
play basketball every day duringthe summer, but I felt like it
wasn't the community I reallyassociated myself with as much.
So I one year I said to my momhey, like you know, I don't
think this is my community, ifyou will.
And she said, ok, no problem,just wanted you to know that
(17:59):
they are a community that's outthere and there for you at any
point in your life.
And that was a very powerfulkind of moment with my mom where
she just understood me and sheknew I wanted to play basketball
and she knew that I wassurrounded by.
Speaker 3 (18:20):
You know the hearing world, so I can imagine, to that
, not knowing the reason behindyour deafness, there was
probably always this fear of itprogressing, and so that, by you
know, exposing you to thatexperience of summer camp and to
ASL, it was kind of just likeyou know if it, if there's a
(18:44):
point in your life where youhave to rely on ASL in order to
communicate that thatintroduction was made as early
as possible to give you thatconfidence and that sense of
community.
Speaker 4 (18:56):
And later on in life.
So in college I took her classan old girlfriend at the time.
She was a speech pathologymajor and I decided I'll take a
fourth class, even though Ididn't need to.
But let it be known, I got an Aand she got a B plus.
But you know it was fun and Ireally got to learn.
(19:22):
And of course, like anylanguage, if you don't practice
every day you lose a lot of it.
But lately, as you saw, at therunway of dreams I met some
people that were deaf andsigning and it comes back to you
pretty quickly.
But if it's not something youpractice and use every day, you
certainly forget a lot.
Speaker 3 (19:42):
I've been, I've been seeing just in more mainstream
media and more obviously withthe representation of the deaf
community and disability atlarge.
I love a show called NewAmsterdam and on that show
there's a surgeon who'scompletely deaf and mute and she
signs to do, you know, thesurgery and she's just another
(20:07):
incredible character on the show.
But I'm, it really is.
For me, as somebody with adisability is normalizing it
even more and it's so excitingto see movies like Koda and all
of these real, authenticrepresentations of the deaf
community in our culture now.
Speaker 4 (20:30):
And we need more of that right, there's under 5% of
actors and actresses showing adisability and a lot of that
percentage is actually played bypeople without a disability.
So the authentic representationis so important, especially for
(20:50):
kids that have disabilities.
You know, I want children tolook up to me you all of us that
actually have the samedisability and they show that
it's an ability that we can beactors and actresses, we can be
comedians, we can be whatever wewant.
Speaker 2 (21:12):
So I'm going to have a question that may not be
politically correct, but when amI?
I don't even know if that's aterm anymore, but it doesn't
matter.
I'm just so curious.
Like your speaking voice, oh,like it's sound, you could be
like someone wouldn't know thatyou are deaf from your voice.
(21:37):
You know necessarily.
Whereas, when we talk aboutwhat's your name in that movie,
you just mentioned Koda, theshow.
Well, anybody like a lot of.
Yeah, like you know, you noticesome people's voices and is that
because, like, well, let me askyou for you.
(22:00):
Is it because it's such a youngage?
You accommodated and modeledand used your voice and didn't
stop?
Is it because people have beensigning and that's what they're
used to and they never used it?
Like, why, how, why is thevoice impacted with?
Speaker 4 (22:16):
hearing.
It's a combination of things,and part of my accommodations
that my mother advocated for wasspeech therapy, and so at a
young age although again atrecess, I wanted to play
basketball they called me in atthe end of recess every day, or
however many three days of theweek, to do speech therapy.
(22:40):
As much as I did not love it, Idid what I had to do and
thankfully the therapist was sonice, Mrs Murphy, and you know I
did, I did great and I gotcandy at the end.
The other kids didn't get candy, you know, but I made sure that
(23:02):
I gave it a good effort.
And my teacher of the deaf wasalso Mrs Burke, but we still
keep in touch.
She was the speech police, so ifI got lazy she would say what
was that?
You know?
Say that again, and then Iwould enunciate a little bit
(23:22):
more, right?
So I was always, you know,making sure that I gave the
appropriate effort.
Also, I had hearing before Ilost it, so that definitely
helped to hear the sounds, theway that they have been spoken.
The people that are deaf, theymight not hear those sounds as
(23:47):
clearly as some of us do, andthey're not.
Maybe if they're mute theydon't speak as much as because
they're communicating via sign.
they don't know what it reallysounds like, and maybe we don't
hear our voices the same waythat a hearing person hears
their voices.
So there's a lot that goes intoit.
Speaker 2 (24:08):
Yeah, and I was thinking that too I'm like, oh
my God, every time I Estella'slike, did you listen to our
podcast?
Like this podcast, I'm like Idon't want to hear my voice ever
because it sounds when, youknow, for people most people
their voice sounds so differentwhen they hear their own voice
from what they think it soundslike right, like it's so not
(24:30):
what I want it to be, so I don'twant to hear it.
But obviously you don't want totake that for granted, right?
But I would imagine that partof it, too, is practice, and if
you don't use it, like withclimbing stairs, if you're able
to, if you stop doing it, youlose the ability to do it.
So the more you do something,the better you get at it, right?
Speaker 3 (24:50):
That's what I was going to compare it to.
Like your speech therapy waslike my PT in school, like I
hated being pulled out to do itand it was boring and it was
annoying but I'm glad you knowand that's those things that we
need to make sure that we arepreparing ourselves and the
self-care element of disability.
Speaker 1 (25:14):
We'll be right back.
Speaker 6 (25:19):
This is George Fred and Jason, the co-leaders of
Speak, interrupting to say thatwe hope you're enjoying this
episode, but please make sure tocheck out our new show, the
Speak Podcast, another greatshow produced by Launchpad 516
Studios.
New episodes available everyweek on all of your favorite
(25:43):
podcast platforms.
Speaker 5 (25:45):
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 (26:05):
Join us on the Speak Podcast as our speakers step
onto the stage and into thespotlight with impactful ideas
and stories.
Speaker 1 (26:15):
We'll let you get back to the show you were
listening to another greatpodcast from Launchpad 516
Studios.
Speaker 3 (26:25):
You're tuning in to embrace it with Laini Anastella,
brought to you by Launchpad 516Studios.
Speaker 2 (26:31):
Hi, hi there, Dustin, nice to meet you again.
Speaker 4 (26:36):
I know you too so excited to be here.
It was so good to meet you bothat the Runway of Dreams.
Just an incredible event.
Speaker 2 (26:44):
Yeah, it truly was.
And for those of you guys whoare listening who have no clue
what we're talking about, reachout to Estella and I and we'll
send you the awesome video thatshows Dustin modeling, which
we're gonna get into in a bit,but I'll let Estella introduce
you.
You guys, it's truly a handsomedude too.
(27:04):
We have to really put a lot ofhis photos up.
Might get a lot of newlisteners.
What are they doing?
Got the Embrace it podcast.
Speaker 4 (27:13):
I appreciate it.
Is it my eyes?
Is it my scruffy beard?
Speaker 2 (27:20):
I'm married.
You're way too young for me andyou're newly married, so
congratulations.
I heard Thank you.
Speaker 4 (27:26):
yes, we're very happy , so I appreciate it.
Speaker 3 (27:30):
A Brixton, newlywed a model, a deaf motivational
speaker and inclusive andaccessibility advocate.
So maybe we can start with howyou entered the disability
community, what that kind ofdiagnosis journey was for you
and your family.
How did little Dustin grow intothis powerful disability
(27:53):
advocate that we have with ustoday?
Speaker 4 (27:56):
Thank you.
Well, it was around the age offive where preschool,
kindergarten, right we had thoseschool nurse hearing exams and
one year I passed, no problem.
The second year they put aboard up in between all the
students and the nurse and Irealized in line, oh, I'm not
(28:18):
gonna be able to lip read.
But I didn't really realize Iwas lip reading until this
moment.
I naturally did what I had todo to succeed and communicate,
and hearing loss wasn't in myfamily, so I didn't even know I
(28:38):
was deaf.
And when I went up to the tableand I realized very quickly I
couldn't hear any of the wordsthe nurse was saying you know,
ice cream, baseball outside allthese words that they would say
and repeat after me I failed.
And then, when they went topress the button and you're
supposed to raise your hand,what I did the previous year is
(28:59):
I saw them move their arm whenthey pressed the button.
Speaker 3 (29:03):
Clever.
Speaker 4 (29:04):
So now I don't have any of those advantages and
showing off.
They called my mom and theysaid I think your son is deaf.
And she said what Unintendedright she?
No one in my family knew.
Speaker 2 (29:19):
If we can pause for just a minute, I wanna fully
comprehend this.
So you basically assimilatedinto your environment and picked
up everything that was neededto.
Even your parents didn't knowthat you had hearing loss and
like at all.
You didn't know how toarticulate that.
(29:40):
You didn't care to articulatethat, you just did what you'd
always done.
Is that what I'm hearing?
That's correct.
Speaker 4 (29:47):
Yeah, yeah, that's incredible.
That's incredible and nowadaysespecially, I always give a lot
of credit back to my grandfather, who helped raise my brother
and I, and my parents wereworking and my grandparents were
always there for us.
My grandfather was a doubleamputee, so when he was in his
mid twenties he got in a boatingaccident and he had a hook and
(30:10):
a wooden leg and so henormalized.
What a disability, what ahandicap in my eyes, really was.
So when I started losing myhearing because it was a gradual
loss over the course of fromfive to about 13 years old, I
kept losing my hearing and itfinally stabilized in the
(30:32):
profound level, which is themost significant loss you can
have, and I just I was supportedby my family that to me it was
just a hearing aid that helpedme hear, just like glasses help
you see.
And I used this new technology.
I thought it was cool.
(30:53):
My friends thought it was coolbecause I said it was cool.
Speaker 3 (30:57):
Oh yes, trendsetter.
Speaker 4 (30:59):
Yeah, so, and that was it.
I just always did what I had todo to succeed.
I had a teacher of the deafthat was my note taker.
She helped me with assignmentsand studying for exams and
things like that.
I had different types ofaccommodations in school and
(31:20):
academically.
Speaker 3 (31:22):
So can I ask what is the cause of your deafness?
Were they able to diagnose thereason behind it?
Was it genetic?
Speaker 4 (31:30):
It's still a theory where we think it's from
chickenpox.
So a virus, a virus, right.
And I had a very severe casearound my face and my ears and
over time I would just keeplosing my hearing and then I
just started losing more andmore and more and I think it was
(31:53):
just a delay effect and mymother always said with the
doctor and then they came to anagreement about it, but it's
never been really proven.
I know there are some studiesnow that bio genetic testing to
better understand the cause.
So we're looking into finallyfiguring it out, hopefully soon.
Speaker 2 (32:17):
I'm just so curious.
So we've had people on who wereblind and they cleared up
stereotypes or assumptions thatsomeone literally can't see a
thing Like.
So some of the people we've hadon the woman from bold beauty
I'm forgetting her name as anexample she was like no, it's
(32:38):
not, like it's totally dark forme, I see some shadows.
When you say is it the samething apply with deafness, where
you like don't hear anything orthings are muzzled, or is it
defined as?
I don't know what is deaf,defined as?
Speaker 4 (32:56):
So without my hearing aids I have a high pitch
frequency hearing loss in theprofound level.
So what that means is withoutmy hearing aids, which what they
do is they amplify sounds.
Right, they don't necessarilyhelp with speech clarity, so
it's still difficult to hearwhat people are saying without
(33:18):
reading lips.
But without them I don't hearany high pitches.
So bells, whistles, alarms,burge, chirping, a lot of babies
crying, whining, sometimeswomen's voices that are higher
pitched, that alarm today, thenational emergency test that was
(33:42):
so loud to me.
I was in the middle of a Zoomcall with another client and I
didn't know where this.
I knew it was coming at somepoint today.
I forgot about it and I was ina hotel lobby.
So there was some noise overthere and I was like what is
happening?
Is that me or you?
And sure enough it was from myphone and my phone was face down
(34:06):
so I didn't see the alert.
But those types of noises Idon't hear at all without the
hearing aids on.
When they're on, they'reamplified.
Speaker 3 (34:17):
So it's more of a.
It's a spectrum, right, because, like Lainey said, it's not
that you cannot hear anything,it's a certain profile of sound
that you're not able to process.
So I think you know, clarifyingthat scale of disability is
always important for us to kindof dive into.
(34:37):
Going back to young Dustin,right, you were fitted with the
hearing aids.
How did you obviously seem likea very happy kid and adaptive.
What were some of those kind ofchallenges that you had to
navigate as a young child,socially, into your teenage
(35:00):
years, into adulthood, dating,all of that fun stuff.
Speaker 4 (35:04):
It's a great question and topic you know Well.
First, I give a lot of creditto my mom who drove me back and
forth, back and forth to theaudiologist to make changes in
the settings every week and eachtime I went I was hearing new
noises and it was too loud.
There was a lot of stimulation.
(35:26):
So we made a lot of changesthat took some time to get used
to.
Academically and socially, Iwas lucky.
I had an older brother who kindof set the tone for me, and in
school everybody knew our familyand the reputation we had and
you know that we were goodpeople and my brother was a
(35:47):
class president.
So growing up over the years hehad a great reputation and we
were both athletes.
So on and off the basketballcourt, the soccer field, people
knew who we were.
We were hard workers and thathelped a ton too.
In regards to my dating life,right, I was a late bloomer, not
(36:08):
because of my hearing loss asmuch, but maybe confidence.
I didn't know how to reallyshow the confidence that I had
because I don't know that peopleunderstood how difficult life
can be with a disability andwhen you look at me, especially
(36:28):
over the screen, you don't evensee my hearing aids.
You don't know that I'm lipreading intentionally.
You don't know that I havecaptions on and you don't know
that my hearing aids haveBluetooth, and that's what makes
this experience accessible forme.
But it's an invisibledisability that I have to
explain that to people and whenI do, wow, that's impressive,
(36:49):
right.
So I don't think I really fullyexplained how much I overcame
to get me to the point I amtoday, at a younger age.
Speaker 3 (37:03):
Were there times where you had to really learn
how to advocate for yourself inthose situations where maybe you
were being discriminatedagainst or left out, and what
were some of those situationslike?
Speaker 4 (37:19):
I remember being at a family event at a Balmitzva and
I was about seven or eight, soa couple of years new into being
deaf and all the 13 year oldboys were all at the kid tables
and they started pointing at myhearing aids and calling me
Balunius and I didn't hear it.
(37:41):
It was when my brother told meand I immediately just started
crying and they got a good kickout of it.
But back in those days myhearing aids were big right,
they were large, covered thewhole ear.
Now they're pretty sleek andmodern and cool technology.
But back then it took some timeto get used to and every once
(38:03):
in a blue moon I would quote bemade fun of.
But I always set the tone wherethese are just cool pieces of
technology that helped me hear,like Glasses, lpc, and I can
still count on two hands howmany times I was ever made fun
of.
Speaker 3 (38:21):
But I love what you said about your parents being
very proactive in making surethat they were always kind of
like through the process oftrial and error.
There's my New York accentcoming out Fine tuning your
hearing aids, and I think thatthat can be applied to all types
(38:43):
of mobility aids and devices,that it's not a one size fits
all.
I mean with Leany and I as faras braces and just in that
category alone, just the trialand error and testing out what
works, what doesn't work, can beexhausting.
But I think it's important notto give up and to always be
(39:07):
advocating for what feels good,what works good, what doesn't
work good.
But I wanted to shift things alittle bit back to the deaf
community.
Can you share a little bitabout how really large this
demographic of people is?
And also I love to talk aboutASL and the differences in the
(39:30):
ASL community within the deafcommunity, cause I know there's
a lot of nuance there as well.
Speaker 4 (39:36):
So there's 50 million Americans that are deaf or hard
of hearing, and that's a hugepopulation.
That's about 14% of the countrythat is deaf or hard of hearing
affected by hearing loss.
In the world, there's 432million people that are affected
by hearing loss.
That's even more of apercentage of the world.
So it's growing by 2050.
(40:00):
That number is gonna go up to700 million.
So now is the time to reallywhich is what we're doing bring
awareness and find more and moresolutions for people that are
affected by hearing loss.
And there's another percentageof people that don't actually
get the help they need.
Whether it's hearing aids, acochlear implant, any sort of
(40:23):
solution, whether it's assistivetechnology or not, they're not
getting the help they need,whether it's because of finances
, confidence, you name it.
So now is really the time toencourage people to join this
community.
We're the most resilientcommunity we anybody's ever met.
That goes for a whole thedisability community.
(40:47):
I'll be the first to talk aboutmental health.
It's not easy and life is noteasy, and to have a disability
on top of that.
Right, you know we've allaccomplished so much, so it's
really something to be proud of.
You should have one of us andall the listeners today you can
(41:07):
think of your own personalstories.
You know it's challenging, buthere we are today and we're
going to tomorrow and the nextday.
So you know it's all aboutbeing positive and carrying that
energy.
But you know, as far as thedeaf community, capital D deaf
versus lowercase D deaf right.
Speaker 2 (41:28):
What does that mean?
Capital D lower D.
Speaker 4 (41:32):
The capital D deaf is really deaf culture, right,
they rely mainly on ASL.
It's really their own communityof people that communicate with
sign language.
Out of that 48 million, it's amuch smaller percentage of
(41:53):
people that strictly utilizesign language.
Now, I've always been a verbalcommunicator.
My whole family, my friends,everybody has always, you know,
been hearing and.
But I also went to summer schoolfor the deaf many years as a
(42:14):
kid and I was acclimented Iguess the word would be with
people that relied on signlanguage and that was a
different community than what Iwas used to, because I went to
mainstream school and it wasduring the summer and I realized
(42:35):
not only did I want to playbasketball every day during the
summer, but I felt like itwasn't the community I really
associated myself with as much.
So I one year I said to my momhey, like you know, I don't
think this is my community, ifyou will.
(42:55):
And she said, okay, no problem,just wanted you to know that
they are a community that's outthere and there for you at any
point in your life.
And that was a very powerfulkind of moment with my mom where
she just understood me and sheknew I wanted to play basketball
(43:17):
and she knew that I wassurrounded by you know the
hearing world.
Speaker 3 (43:24):
So I can imagine to you that, not knowing the reason
behind your deafness, there wasprobably always this fear of it
progressing, and so that by youknow, exposing you to that
experience of summer camp and toASL, it was kind of just like
you know if it, if there's apoint in your life where you
(43:46):
have to rely on ASL in order tocommunicate that that
introduction was made as earlyas possible to give you that
confidence and that sense ofcommunity.
Speaker 4 (43:57):
And later on in life.
So in college I took her classan old girlfriend at the time.
She was a speech pathologymajor and I decided I'll take a
fourth class, even though Ididn't need to.
But let it be known, I got an Aand she got a B plus.
But you know it was fun and Ireally got to learn.
(44:24):
And of course, like anylanguage, if you don't practice
every day you lose a lot of it.
But lately, as you saw, at therunway of dreams I met some
people that were deaf andsigning and it comes back to you
pretty quickly.
But if it's not something youpractice and use every day, you
certainly forget a lot.
Speaker 3 (44:44):
I've been, I've been seeing just in more mainstream
media and more obviously withthe representation of the deaf
community and disability atlarge.
I love a show called NewAmsterdam and on that show
there's a surgeon who'scompletely deaf and mute and she
signs to do, you know, thesurgery and she's just another
(45:08):
incredible character on the show.
But it really is, for me, assomebody with a disability, is
normalizing it even more andit's so exciting to see movies
like Koda and all of these real,authentic representations of
the deaf community in ourculture now.
Speaker 4 (45:31):
And we need more of that right.
It is under 5% of actors andactresses are showing a
disability and a lot of thatpercentage is actually played by
people without a disability.
So the authentic representationis so important, especially for
(45:52):
kids that have disabilities.
You know, I want children tolook up to me you all of us that
actually have the samedisability and they show that
it's an ability that we can beactors and actresses, we can be
comedians, we can be whatever wewant.
Speaker 2 (46:13):
So I'm gonna have a question that may not be
politically correct, but when amI?
I don't even know if that's aterm anymore, but it doesn't
matter.
I'm just so curious.
Like your speaking voice, oh,like it sounds, you could be
like someone wouldn't know thatyou are deaf from your voice.
(46:38):
You know necessarily, right,yes, whereas when we talk about
what's your name in that movie,you just mentioned Koda the show
.
Speaker 4 (46:49):
Well, anybody like a lot of.
Speaker 2 (46:51):
Yeah, like you know, you notice some people's voices
and is that because, like, well,let me ask you for you.
Is it because it's such a youngage?
You accommodated and modeledand used your voice and didn't
stop?
Is it because people have beensigning and that's what they're
used to and they never used it?
(47:13):
Like, why, how, why is thevoice impacted with?
Speaker 4 (47:18):
hearing.
It's a combination of things,and part of my accommodations
that my mother advocated for wasspeech therapy, and so at a
young age although again atrecess I wanted to play
basketball they called me in atthe end of recess every day, or
however many three days of theweek, to do speech therapy.
(47:41):
As much as I did not love it, Idid what I had to do and
thankfully the therapist was sonice, Mrs Murphy, and you know I
did great and I got candy atthe end.
The other kids didn't get candy, you know, but I made sure that
(48:03):
I gave it a good effort.
And my teacher of the deaf wasalso Mrs Burke, but we still
keep in touch.
She was the speech police, so ifI got lazy she would say what
was that?
You know, say that again, andthen I would enunciate a little
bit more, right?
(48:24):
So I was always, you know,making sure that I gave the
appropriate effort.
Also, I had hearing before Ilost it, so that definitely
helped to hear the sounds, theway that they have been spoken
For people that are deaf.
(48:44):
They might not hear thosesounds as clearly as some of us
do, and they're not.
Maybe if they're mute theydon't speak as much as because
they're communicating via sign.
They don't know what it reallysounds like, and maybe we don't
hear our voices the same waythat a hearing person hears
(49:06):
their voices.
So there's a lot that goes intoit.
Speaker 2 (49:09):
Yeah, and I was thinking that too I'm like, oh
my God, every time I Estella'slike, did you listen to our
podcast?
Like this podcast, I'm like Idon't want to hear my voice ever
because it sounds when, youknow, for people most people
their voice sounds so differentwhen they hear their own voice
from what they think it soundslike right, like it's so not
(49:32):
what I want it to be, so I don'twant to hear it.
But obviously you don't want totake that for granted, right?
But I would imagine that partof it, too, is practice, and if
you don't use it, like withclimbing stairs, if you're able
to, if you stop doing it, youlose the ability to do it.
So the more you do something,the better you get at it, right?
Speaker 3 (49:52):
That's what I was going to compare it to.
Like your speech therapy waslike my PT in school, Like I
hated being pulled out to do itand it was boring and it was
annoying, but I'm glad you knowand it's those things that we
need to make sure that we arepreparing ourselves and the
self-care element of disability.
(50:13):
Hey, Embracers, thank you somuch for listening and
supporting the Embracid podcastBrought to you by Launchpad 516
Studios executive, produced byGeorge Andriopoulos and hosted
by Laini Ispia and Estella Hugo.
Our music and sound effects arelicensed through Epidemic Sound
.
Embracid is hosted withBuzzsprout.
Speaker 2 (50:32):
Do you have a disability related topic you'd
love for us to feature, or couldsomeone 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
631-517-0066.
Speaker 3 (50:53):
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 Embracid underscore
podcast on Instagram and makesure to follow all the great
podcasts produced by Launchpad516.
Speaker 2 (51:08):
Studios.
We hope you join us next timeand continue to embrace it.
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