Molly Burke: What People Get Wrong About Blindness (and Accessibility)

Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
The hardest parts of my life aren't that I can't see.
The hardest parts of my life are society's attitude and
the inaccessibility I face. My blindness isn't a negative bad
thing about me. It's a part of what makes Molly Molly,
and there's nothing negative about it. At fourteen is when
I lost the majority of my vision. I definitely hit
rock bottom. If you change nothing in your life, nothing's

(00:20):
going to change. I can't be a passenger in recovery
and expect to get better. I'm going to try to
take my pain and turn it into purpose. I started
getting really into health and wellness practices, eating food that
actually fueled my mental and physical well being, and all
of that, over many years combined help me rebuild and

(00:42):
find new direction that felt worth living. For Cope is
one of the most powerful things we have, because sometimes
that is all you have.

Speaker 2 (00:54):
We have a great episode coming up today with Molly Burke,
a creator, author and a speaker who all so happens
to be blind. We'll be right back with our conversation
after this short break. What is up, guys, Welcome back
to Post Run High. Today's guest is Molly Burke. She

(01:17):
is a creator and author, a speaker who has built
a massive community by talking honestly about identity, confidence, and accessibility.
Mollie is someone who has shown the power of positive
thinking and what happens regardless of the cards you have
been dealt when you just keep moving forward.

Speaker 3 (01:36):
Mollie, I have been following you for years.

Speaker 2 (01:38):
I've been watching your vlogs, watching your YouTube videos, and
I'm just so excited to be here with you today.

Speaker 1 (01:43):
Thank you, and you absolutely slaid that intro. I feel
so honor.

Speaker 2 (01:47):
Second time is a charm. I personally feel like the
first time was better. But guys, we had audio issues
and then we had to refilm it.

Speaker 3 (01:53):
So no you qushed it. It was good ten out
of ten.

Speaker 2 (01:55):
Okay, So Molly and I just ran a mile through
West Hollywood and then we got a little machia afterwards,
which we're gonna be a sip in during this podcast.
But how are you feeling postar one mile run?

Speaker 1 (02:06):
I'm good, you know, as a non runner. I'm like,
you did it, Mollie. You made it through.

Speaker 2 (02:14):
Yeah.

Speaker 1 (02:14):
I feel good. I feel energized. Part of that could
be the macha.

Speaker 2 (02:17):
We talked about this a little bit on the run,
but just to rego over it. Like what does movement
look like in your life currently?

Speaker 1 (02:23):
So I'm a big like yoga, pilates, that kind of workout,
and then I do for cardio an uphill incline, treadmill
walk usually at like an eight to eight point five incline,
so I'll do like a pretty steep incline and then
like three point five miles an hour to three point
eight miles an hour, so like not super fast, and

(02:44):
I'll do that for like thirty to forty five minutes,
depending on the day. And then yeah, like mostly all
different forms of yoga. I love suspension yoga. I love
for former pilates, Matt pilates, I love classes I've been
getting into like fusion classes too, like bar meets pilates,
or like sculpt yoga where you're doing yoga with weights

(03:05):
a lot of the like strap on wrist and ankle weights,
mini hand weights, that kind of stuff. So I like
to mix it up. But I I've done all different
kinds of fitness. I grew up a competitive athlete, so
just being able to move my body has always been
really important to me in a big part of my life.
But of course as I went blind, I had to
change and adapt to that. And what really met my needs?

Speaker 3 (03:26):
What sports did you play growing up? Like? What was your.

Speaker 1 (03:29):
Oh my girl, I did it all. I'm like, how
did my parents juggle my schedule? Like every single day
I had an activity? I was truly like, let's do everything.
But my big sports where I was a competitive dancer
and I was a competitive soccer player, and I was
a like center forward or left wing or right wing
depending on the game.

Speaker 2 (03:47):
So what was that journey like for you when you
started going blind? And I know it was something that
was happening. You're basically your whole life since and you
can tell the story of what age you know you
got diagnosed and then when you officially went blind. But
what was that journey like for you going from being
able to see and loving to move your body and
being an athlete to then losing your vision.

Speaker 1 (04:10):
So I've been legally blind from birth, but to me,
like I was cited, I could see a lot. I
could read and write, and I could see colors and
faces and navigate the world without any mobility aid. Like
I was. I was good, you know, Like I said,
I played competitive soccer on a site a team as
a as a forward position, so even though I was
legally blind, it wasn't really impacting my ability to move.

(04:32):
I was diagnosed with my disease at four years old.
My main eye disease is called Reddinitis pigmentosa, which causes
progressive vision loss. So on and off throughout childhood, I
would slowly lose vision, it would stabilize, slowly lose it stabilize,
And around eight years old is when I had to
be pulled from soccer, and that was devastating to me.

(04:53):
Soccer was honestly like my identity. I like identified as
a soccer player. That was my passion, and so having
to be pulled was really upsetting to me. And I
had like just gone competitive that year, Like it was
like I was so excited. I'd worked my way up
through the whole system to get to like the most
competitive level, and then all of a sudden, I'm being

(05:15):
pulled because they started noticing that I just wasn't seeing
enough to be safe on the field anymore. And that
wasn't a call that I, at eight years old could
make for myself, you know. So my parents and my
coaches had to be like it's time and they pulled
me and I ended up transitioning because it was winter
when I stopped playing soccer, because when you're competitive, you know,

(05:37):
you play all year round. So it was during like
winter training that I was pulled and my parents were like,
we need to find a sport to fill that gap
for her, and so they found downhill skiing for the blind,
and so that kind of became my new love. I
fell in love with downhill skiing, and slowly, like every
time I would lose an activity, my parents would find

(05:57):
an accessible one to fill that void in my life,
so that I never had to be without movement. But
I'm so glad I was a part of my life
from such a young age. Because being blind, you navigate
the world so differently, and even just something as simple
as your body moving in space can be difficult to understand.
And because balance relies so much on vision, a lot

(06:21):
of blind people really struggle with balance, including myself. You know,
even in yoga class, right, they't to say, if you
want to challenge yourself, close your eyes when you're in
balancing poses. So in dance, right, I couldn't spot when
I was doing my turns. So, like all of these
things was constantly adapting. So I feel like having a
base level of fitness and activity that got me connected

(06:43):
and understanding how my body moves and really like feeling
movement in my body was super important, and then maintaining
that and finding new accessible ways to keep that up
has been a real game changer for me, just with
my body and movement in space and balance, but beyond that,
it's also really hard for blind people to maintain fitness

(07:05):
because it is not as easy to move within space.
You know, we can't just go out for a run,
jump on a bike, do these things that most people
could do if they want to. And even just walking,
we often like sometimes walk slower because we're navigating through
sound and through the tactile feel of our cane or

(07:26):
through the pull of a guide dog's harness and takes
a lot more concentration to navigate, so we're not even
necessarily walking as quickly. So it's so important to be
intentional about getting that movement in because frankly, like I'm
not just getting it in a day to day easy
way that the average person might be able to. And
then at fourteen is when I lost the majority of
my vision, and that was really hard I had to

(07:49):
stop dancing when I was about twelve, so like, slowly
throughout childhood, I was losing different physical activities and then
replacing them with others like horseback riding or or former
plage suspension yoga, oftentimes trying to find activities that a
either offered accessibility, like downhill skiing for the blind with
a sight of guide, or horseback riding at a stable

(08:10):
that specialized in disability writing, or finding things like that
reformer pilates or suspension yoga where I had a physical
tool that I was utilizing to help me balance, so
that took like one of the elements away, and then
I was stationary with this one machine, not moving and
following the verbal instructions of a teacher.

Speaker 2 (08:32):
So much to unpack there, but I feel like, A,
it's so great to know how involved your parents were,
because I feel like family is so important, especially when
you're going through something that is so traumatic and causing
so much rapid change in your life at such a
young age. Like I know what it was like to
be playing a sport competitively and then having that sport
taken away from me, but I do not know what

(08:52):
it would be like to you know, have that sport
taken away from you because you can't physically see, you know,
and be on the field. So like, I can't even
imagine that experience was like from you, not only like
from the physical aspect of it, but also then from
the social aspect, because it's like, as young kids, you
find so much community and so much friendships in being
on these sports teams. So to constantly be like changing

(09:14):
the sport that you're doing and then you know, forcing
yourself to adapt to a new one, Like obviously that's
very healthy for your mindset to be like, Okay, I'm adapting,
I'm changing, you know, I'm opening myself up to this
new thing. But it's also really hard to constantly have
these things that you're passionate about be stripped away from you.

Speaker 1 (09:31):
Yeah. Absolutely, the emotional impact was huge. Like I struggled
a lot with depression, with anxiety, and it was extra
difficult because I was always bullied at school. So my
activities outside of school were that much more important to
me because that was where I had community and I
felt accepted. And it was always frustrated to me that

(09:51):
like wait, when I'm at summer camps or I'm at
my physical activities. I'm super social. I have all these friends,
everybody accepts me and help me, and then I go
to school and everybody's like mean to me and judges me,
and it was it was really frustrating. But that's why
those extracurriculars were so much more important for me and
fact to this day, my longest standing friend was one

(10:11):
of my soccer teammates. We've we've played together since we
were like five. We played together on the Purple Powerpuff
Girls when I went when we both we both went
competitive the same year. We were both forward position, and
we would refuse to play if we weren't both on
the field at the same time because we always wanted
to be on the sidelines at the same time, like

(10:32):
eating our orange slices and like kiking on the side.
So yeah, it was really important for me socially.

Speaker 3 (10:38):
It is.

Speaker 2 (10:38):
And also the friendships that you make through doing something
physically challenging, I think are like the best friendships. And
that's why I love doing the running interview show because
it's like you're pushing yourself through doing something hard. You're
running together and then you know, you sit down and
you podcast after. But I don't know, just the act
of doing something physical creates.

Speaker 3 (10:56):
These really special friendships.

Speaker 2 (10:58):
So I love knowing that you've made pain such a
close relationship with your friend from your soccer team back
in the day. Also just speaks to her as a person,
right to not just like drop you as a friend
because you were no longer on the team, right, And
it speaks to the power of your guys's friendship and connection.

Speaker 3 (11:13):
So that's awesome. What's her name so we can shout
her out page hi, page page.

Speaker 2 (11:18):
Yeah.

Speaker 1 (11:18):
It was really sad because you know, at eight years
old when I stopped, it's not like we had like
cell phones to text each other or I'm aging myself
like MSN to message each other. So we lost contact
for a few years, and then once we got MSN.
She she was also an incredible hockey player, so she
actually left soccer to focus on competitive hockey. And one
of her hockey teammates was my classmate and she they

(11:41):
started talking and realized they both knew me, and she's like,
give me her MSN and she reached back out like
years later, and you know, our connection was just exactly
the same, and she's an incredible person.

Speaker 2 (11:50):
That's so cute when you say you were getting bullied
in school. Did the bullying happen as a result of
you losing your vision or was that something you were
always struggling with.

Speaker 1 (12:02):
I always struggled with it, but it was also always
pretty clear to my classmates that I was different. And
I think when you stand out as being different, you
become an easy target because you're more vulnerable. And kids
don't understand differences unless we teach them, and back then,
nobody was being taught. You know, even to this day,

(12:24):
disabled people, out of all minorities, have the least media representation,
and in twenty twenty five we have three point one
percent media representation. Most of that is written, directed, and
played by non disabled people, so it's inauthentic and perpetuate
stereotypes and misconceptions. And within that, the least of our
representation is in children's media, and media tends to be
the only way that people learn about disability. So kids

(12:47):
really knew nothing about disability, and a lot of us
come from generations where we were taught when you saw
a disabled person, don't point, don't look, don't stare, don't
ask questions aka ignore, And so when a kid would ask,
it'd be like sh and then they were never given
access to learning, and therefore I was different. They feared me.

(13:08):
I was weird because you know, I started learning Braille
at five, and I had a special teacher that sat
beside me in class growing up. So I had like
a giant desk with a lamp on it that I
would illuminate my work with. I had a big magnifying
glass to see my work. I wrote with markers instead
of pencils. I wrote large print instead of normal small font.

(13:32):
I had like cream colored paper with thick black lines
instead of white paper with the thin lines. So there
was like all of these little signs that I was different.
My special teacher would write on a whiteboard what the
real teacher was writing on a chalkboard at the front
of the class, So like, the kids knew I was different,
but they didn't know how or why, and so it
was just really hard. At nine years old, I started

(13:54):
using a cane full time, so again that made me
very obviously different, and kids just didn't treat me very nicely,
which was hard because I'm an extrovert. I'm a super
bubbly social person, and so I was not one to
be like a little wallflower and just be like, Okay,
I was always trying to put myself in the middle

(14:16):
of things because I always wanted to be like what's
going on, Like I want to be at the sleepover,
I want to go to the mall, I want to
hang out friends, And then I would like put myself
in these positions where I would go to a sleepover
with my friends and then they would be mean to me.
And so it was really tough, and I ended up
changing schools five times over the course of like you know,

(14:38):
grade one through to graduating grade twelve, just in attempts
to find better social situations and better accessibility and adaptations
for me as my needs as a blind student continually
changed as my vision loss continually happened.

Speaker 2 (14:52):
Yeah, and it seems like the vision loss like to
be nine years old and already using a cane, like
it even though you completely lost it at fourteen, And
now you see shadows for its shadows and light.

Speaker 1 (15:02):
Yeah, I see light and shadows, Like right now, I
can see that we have three lights around us, three
like box lights, and then I can see that there's
like a chandelier over there. When I say I can
see that there's a chandelier. I just see dots of light.
I don't see like the chandelier, so like I could
see a candle in the middle of the table. All
I see is the flame, but I know it's a

(15:24):
candle because context clues. So I can walk in here
and be like, oh, I like that light. Literally it's
all black to me. Everything is black. And then I
just see like all these spots of light. I'm like, Oh,
that's pretty. I like all the spots of light. So
I like it's a huge joke with my friends and
family because everywhere we go, I'm like, oh, I like
the lights. Like that is the only thing I can
ever compliment anywhere on So like, walk into somebody's I'm like,

(15:47):
I love your lighting.

Speaker 3 (15:48):
No, but the lighting. The light.

Speaker 2 (15:50):
So guys, we're just for a little bit of context too,
because this is the first time you guys are seeing
me if you're watching this podcast or if you're listening.
This is the first podcast that we're doing in la
and we're going to be here till the end of
February and then the first week of March we're going
to be in Austin, Texas filming. But this is our
first shoot in our living room here in LA And
the person that we rent from, John, his taste is

(16:12):
like very eclectic, so he has like.

Speaker 3 (16:14):
The coolest nick knacks.

Speaker 2 (16:15):
Like even just if you guys were to go to
YouTube and look at the set that we're sitting in
right now, like the couch is like really cool, Like
it's just how you'd want a podcast set to be,
because it's kind of like funky. But the light that
that Molly was referencing looks like a giant like spike ball,
Like it kind of looks like what a blowfish looks
like when like they blow up in a way and
then there's like lights on the specs. But I loved

(16:35):
so much when you when you compliment.

Speaker 3 (16:38):
The light, because the light is really cool, just saying.

Speaker 1 (16:40):
Yeah, I'm always looking for an interesting shape of light
because it's like when all you see is light, give
me something interesting to look at.

Speaker 2 (16:47):
And isn't it true that your sight also there's almost
like fireworks going off in it.

Speaker 3 (16:52):
So right now, what are you seeing besides you just explained?

Speaker 1 (16:55):
Yeah, So I have Charles Benny syndrome, which happens mostly
to people with retinal eye diseases like mine and mostly
to people who lose their vision very quickly, and so
essentially my brain kind of panicked and was like I
need to see, and so it rerouted itself and did
this fun thing where twenty four to seven NonStop, eyes open,
eyes closed, going to sleep all the time. I see blue, green,

(17:18):
and purple, flashing whizzing lights in different shapes and patterns.
So yeah, very fun. It's actually the only condition that
we currently know of that causes visual hallucinations that has
nothing to do with like mental health or your brain
in that way. So it is technically visual hallucinations like
you might experience on certain drugs or with certain mental

(17:41):
health conditions. Some people with Charles Bonnet syndrome will actually
see like complete scenes. So like one man that I
spoke to, like walked into a room and like saw
a mid medieval scene happening in his living room, so
like you will, or like a waterfall in their bedroom,
like you will literally see full scenes that aren't there.

(18:03):
And so I like to talk about it because it's
very undernown and a lot of people who are experiencing
vision loss and develop Charles Bne syndrome feel a lot
of shame or embarrassment or fear so they don't tell
anybody because there's a lot of stigma around having visual hallucinations.
But it is unfortunately something that can happen for those

(18:25):
of us who deal with significant quick vision loss due
to retinal diseases. And I also like to talk about
it because a lot of elderly people are misdiagnosed with
things like Alzheimer's or dementia because they are dealing with
macular degeneration, which is a retinal disease that causes significant
vision loss later in life, and they develop Charles Benet

(18:47):
syndrome where they are seeing things and they start saying
that and people misdiagnose them. So I really like to
raise awareness because it's a super rare condition that is
not talked about. A lot of medical providers don't even
know about it. Oh yeah, I like to talk about
it and make sure people understand that this is a
totally normal thing that can happen with vision loss. There
should be no stigma around it, whether it's mental health
or not, like you should speak to a professional if

(19:09):
you're experiencing visual hocinations of any kind. But yeah, it's
something that can happen and it does not necessarily mean
there's any mental health or drug use happening.

Speaker 2 (19:19):
It's wild what our bodies do when they're trying to
compensate for something, and like the fact that that is
something that happens is just it's crazy.

Speaker 1 (19:26):
Yeah, I kind of liken it too. A lot of
my friends are amputees. You know, listen when you're disabled,
like most people don't go A lot of my friends
are amputees. But when you're disabled and your whole world
is disability advocacy, A lot of my friends are disabled.
So I have a lot of disabled friends who are amputees,
and they talk about phantom limb pain where they feel
like their foot is itchy and they aren't above the

(19:48):
knee amputee, they don't have a foot and they feel
like their foot is itchy or it's painful, and it's
the same thing their brain is, just like misfiring signals.

Speaker 2 (19:58):
We've had a lot of amputee and just paralympic athletes
on the Running Interview show and they've talked about that
phenomena before and again, like pretty wild. When you were
growing up and going through your vision loss over the years,

(20:22):
what was your mindset shift? Because I know in twenty fourteen,
you started posting on YouTube, and that's where you started
growing your channel from. But I'd imagine that when it
all of a sudden hit and your vision kind of
rapidly declined, right, and you now could no longer see
what you were even used to seeing.

Speaker 3 (20:38):
That comes with a lot of change.

Speaker 2 (20:40):
And also, I'm sure depression and not feeling great about yourself, right.
I know you've been very open about that. So what
was the mindset shift for you to go from Okay,
I'm in a really dark place right now, this feels
like rock bottom to then lifting yourself out up out
of it.

Speaker 1 (20:57):
I would love to say there's one fix it all solution,
but unfortunately that is not the case. I definitely hit
rock bottom. I was suicidal. I was struggling a lot
with depression, and I kind of like had a plan
and I was like, Okay, that's the option that's there.
I can leave this world. And the other option is

(21:22):
that I give myself one more chance. Because when I
went blind, I spiraled into such a dark place. I
was being so badly bullied, not just from peers, but
from teachers. I was being accused of faking it, not
from my family, not from my doctors, but from again,

(21:44):
like literally, teachers accused me of faking it.

Speaker 3 (21:46):
And why do you think they accused you of faking it?

Speaker 1 (21:49):
Because I don't fit the stereotype that society has about blindness.
And when you look up red a night as pigmentosa,
you see that it's a disease that causes tunnel vision
and night blindness. But what you don't see is those
are just the two symptoms that everybody with RP has.
Those are the two symptoms that across the spectrum you
develop if you have RP. However, there is like over

(22:12):
one hundred I think known forms of RP at this point,
and they all happen differently. I have a really rare
type called tulip one, and I actually recently found out
I have a second gene deformity as well, but tulip
one is my main gene deformity that causes significant early
onset blindness. So most people with RP, the most common kinds,

(22:32):
like E sixty four or E sixty five, go blind
later in life very slowly and typically retain some central
vision that's very different than something like me tulip one.
So it's like when you get keyboard warriors, like googling
the basic generic symptoms of a really rare complex disease.

(22:53):
And I also have multiple diseases. I've nystagmus, which is
what you see my eyes shaking. I had strabismus, which
was surgically corrected. Like I've all these lots of stuff
going on, but i just say RP because it's simple,
and nobody cares about my Like binder this thick of
a medical journey, so like I would have doctors or
I would have teachers being like she's faking it for
attention and stuff like that. Like my family had to

(23:16):
get my doctor on the phone to be like, Hi,
there's physically no way to fake this. This is really happening.
Like we can look in the back of her eye
and we can see that the tissue has died. There
is no way to fake this. They have like this
one test where they put a wire across the eyes
and it tests like how much your eye the back
of your eye is receiving and they were like, her

(23:38):
eye is receiving like less than ten percent, like it
was it was like three percent or something. So it
showed that my retina was like almost completely dead. And
so now like these teachers being like she's faking it,
and it was very frustrating. And then like anytime i'd
leave my house, people would treat me differently, and it

(24:00):
was hard because I felt like the same person inside.
I still had the same interests, humor, sass, intelligence, Like
I still had the same feelings, the passions, the interests.
I just couldn't see and I had to adapt and
do things differently. But all of a sudden, everybody was
like ignoring me. I'd go to a restaurant with my
family and they would be like, what does she want
instead of saying what do you want? It was like

(24:21):
I couldn't see the world and the world could no
longer see me, and that was just so frustrating, and
I felt like such despair, like how how is this
ever going to get better? And that's why I got
to that place of just like having this plan in
mind and being like, Okay, that's an option, And then
I was like, Okay, the other option is just like
trying because as I said to you at the end

(24:45):
of our run, like if you change nothing in your life,
nothing's going to change. So I need to be intentional
about changing, Like I can't be a passenger in recovery
and expect to get better. I need to be proactive
and be involved and want to get better and give
myself a chance. And so I kind of took it

(25:06):
one day at a time. That was all I could handle.
Was like, Okay, I'm going to wake up today and
today I'm going to try to take my pain and
turn it into purpose. I'm going to try to educate, motivate,
or inspire one person today with my story. So if
if I go out and somebody makes a stupid comment

(25:26):
or asks an ignorant question, I'm going to give them
grace and be polite and I'm going to answer it
and I'm going to educate them. And that feels empowering.
Instead of feeling like a victim to my circumstance and
like nobody gets me in society doesn't understand and doesn't
care to, I'm going to turn my mindset around and
be like, well, I have the ability to help change
my own circumstance. And so I started doing that and

(25:47):
I started getting really intentional about my health mentally, physically, spiritually.
I started getting That's when I started getting into yoga
and finding new ways to move my body. I started
exploring spirituality, I started getting really into like health and
wellness practices, eating food that actually fueled my mental and
physical well being, and all of that, over many years,

(26:10):
combined to help me rebuild and find a new direction
that felt worth living for.

Speaker 2 (26:18):
Yeah, and I know you've talked a lot about positive
affirmations too during that time.

Speaker 3 (26:22):
How did positive affirmations help you?

Speaker 1 (26:25):
So when I was sixteen, I read Louise Hey, you
can heal your life, and it completely changed the way
I spoke to myself. And I didn't have to believe it.
I just had to say it. So instead of like
telling myself like I can't do that, I'm useless, this sucks,
it was just like I can, I will telling myself

(26:46):
every single day, you're smart, you're beautiful, You're strong, you
deserve to be happy, you deserve to be healthy, you
deserve to find success and love and friendship. Telling myself
that regardless of if I believed it or not, and
eventually telling myself that every single day. It just became
second nature.

Speaker 2 (27:02):
And I think one of the things that I always
have loved about your YouTube. And you know, I discovered
your channel when I was in college, so I was
you know, in my late teens early twenties. And what
I always loved about it was you didn't just talk about, oh,
I'm blind, these are my limitations.

Speaker 3 (27:19):
This is what I ken and can't do like you know.

Speaker 2 (27:21):
And of course that was like an underlying theme because
you would talk about it in specific ways, whether you're
reorganizing your your whether you're reorganizing your makeup or you know,
doing your makeup and showing how you put it on
by touch, right, what we were talking about before we
started filming. But a lot of your videos were just
you know, you vlogging and being a girl and loving
fashion and clothes and putting on makeup and talking about

(27:43):
beauty and wellness. And I always thought that was really
cool too, because it just normalizes your situation. And I
think that is the most important thing with disability, is
just normalizing it in society. And I know you've talked
a lot about the word ablest. Can you explain to
us what that means.

Speaker 1 (28:01):
Yeah, So, ableism is like what racism is to the
bipop community, or what a homophobia is to the gay community.
It is when people intentionally or unintentionally make a comment
or do something that you know, is discriminatory or hurtful
to disabled people. So an example of like a microaggression,

(28:24):
a microableism would be asking my partner what does she
want when I'm sitting right there. That's like one small example.
A big example of ableism would be saying you can't
come into my restaurant with your service dog.

Speaker 2 (28:38):
And you bring your service dog pretty much everywhere, right
like on planes, your service dog goes with you.

Speaker 1 (28:42):
Yeap, my guide dog. If I'm there, nine times out
of ten, nine point five times out of ten, my
guy dog's there.

Speaker 3 (28:47):
Yeah, shout out Elton John.

Speaker 1 (28:49):
He's a beast. He's a cute twist.

Speaker 3 (28:51):
Yeah.

Speaker 2 (28:51):
But you know, back to your content, like when you
were originally deciding to post content, like what inspired you
to make it? Have such a rain, you know, and
not just talk about one specific thing.

Speaker 1 (29:02):
Normalizing and humanizing disability was a huge goal of mine.
So it was really like part education, part normalization. I
really wanted to show people that beyond my blindness, most importantly,
I'm just I'm just a girl, Like I'm just a person.
I have the same interests and passions as you do.

(29:23):
I might just access them slightly differently. And if that's
true about me one blind girl on the internet. Maybe
that's true about the deaf girl in your class, and
you should give her a chance. Maybe that's true about
the wheelchair user who comes in for your job interview,
and you should give them a chance for that job.

(29:44):
I really think most people it's us in them. You know,
it's like they're over there and we're over here. We're
not like you, And people don't realize that the majority
of disabilities are acquired through age, accident, or illness. Majority
of disabilities are not from birth. Most of my disabled
friends became disabled later in life because of an accident,

(30:05):
because of an illness. And then, as I said, aging
is huge. Most people aging become disabled in some way
or another. And so it's so important to realize that
it's not us in them. We are all on the
same team, and you should care, you should want to learn,
you should get involved, because you never know when it
will be you or when it will be one of

(30:26):
your loved ones. So I really wanted to create that
space and create a safe space for people to learn
the things they've always wanted to know. But I've never
had access to learning because, like I said, like I
think education is the key and being able to do
that through entertainment on a free platform that anybody can access,

(30:47):
it felt like the space to do it. I found
YouTube in two thousand and eight after going blind after
losing all my friends, and I would watch like all
the og beauty and fashion and lifestyle girl and I
loved their content so much and it felt like friends
through a screen, which I thought was so powerful. But
the big thing missing was none of them were disabled.

(31:09):
So there was like that big key part of my
identity that I still didn't see, and I also didn't
see in mainstream media. So for me starting YouTube as
one of the first disabled content creators eleven and a
half years ago, it was also about bringing representation and
creating space where other people in my community, other service
dog users, other disabled people, other people with mental health

(31:32):
issues or who were blind, could find content that was
for them and about the life that they live. And
then non disabled people could find it and learn about
a life that they don't know anything about but might
have maybe always been curious about. So it was kind
of like double duty. And it was as important to
me to make those very poignant like this is disability

(31:54):
education content as it was to make totally normal content
that any other non disabled creator would be making. And
that's that balance of advocacy and normalization.

Speaker 2 (32:05):
When you first started posting, and as you continued to post,
what for you was always the hardest part about putting
yourself out there online.

Speaker 1 (32:13):
You know, I faced a lot, and I still do
a lot of those same misconceptions I faced in real
life when I went blind, She's faking it, And constantly
hearing that, constantly having strangers on the internet invalidate your
lived experience, invalidate one of the most traumatizing thing that's
ever happened to you is really frustrating. But instead of

(32:38):
letting it pull me down into a negative mindset, I
let it fuel my fire. And I think that came
from this shift that I'd experienced earlier in my healing
journey of saying, I can be a victim or I
can empower myself. I can be negative, or I can
choose positivity. I can I can look at a glass
and see it half empty at first, and then catch

(32:58):
myself and say, nope, flip, it's half ful. This is
what that mindset shift is. Happiness, I realized is an
active choice, and I chose to not let that like
judgment and negativity and misconceptions pull me down like I
had previously. I was like, Great, one more video I
need to make educating on why. Yes, not all blind

(33:20):
people have foggy gray eyes. Yes, blind people can still blink. Yes,
blind people can still move their eyes. Yes, blind people
don't all wear dark sunglasses. Yes, we don't feel faces
like trying to make all of those different videos being
like all right, I see your negative comment, I see
your ignorance fuel for my fire. That's one more person
I need to educate, and I'll do it in a video.

Speaker 2 (33:41):
And I also feel like one of the comments that
you get sometimes is like, well, how can she make
such good eye contact? And it's like and you can
correct me if I'm wrong, But it's also like, being
blind doesn't mean you can't look in the direction of
the camera.

Speaker 1 (33:52):
The camera is generally sitting in front of me, Like
this is what I don't understand. I'm looking forward if
the camera's there, and I'm like, okay, God, Like that
would take more effort than just looking forward at the camera.
It's so confusing to me. And then there's ways of
working around it, like previous to doing YouTube I hosted

(34:13):
TV shows and I would be on set and the
intro my producer like really wanted a panning shot, and
so I had to track the camera as I would
do my opening monologue every single week, and so she
would send a script over the day before. I would
have to fully memorize the entire hour of content in

(34:35):
like two hours because I can't use the teleprompter. And
then I would get to set. And what we did
was because I can see light, they rigged the camera
to have a little light right above the lens, and
so when the camera would move, I would just follow
and track that little tiny light that was right above
the lens, so it made it look like I was
making eye contact with the camera. So it's just about
finding like little tips and tricks and hacks that work

(34:57):
for you, and that worked for me, So yeah, that
there's always ways of working around things. Even if I
had no light perception, I am certain I could find
a way to do it. People are designed to be resilient.
All the time. I get comments like if I went blind,
I could never do it. If I went blind, ID
off myself, And like, I get where they're coming from,

(35:18):
because I did have that feeling at one point. But
I can tell you humans are so resilient. We are
designed to rebuild, We are designed to be flexible to
adapt to our new circumstances. It doesn't mean it's easy,
but once you do it like this is my normal.
To me, doing makeup by touch is just as easy

(35:38):
as you doing makeup in the mirror. It's what I'm
used to. I do it every single day. I don't
even notice. Where I face barriers is when things are
inaccessible and haven't been designed with everybody in mind. When
I go to the gym and the treadmill is entirely
touch screen, then yes, I feel disabled because my partner

(35:59):
has go and hit all the buttons and set me
up before he goes off to do his workout. But
if that had tactile buttons, or if that had a
screen reader on it that I could turn on, then
I would not feel disabled. It wouldn't feel difficult being blind,
which is why to me, I often talk about like
the cure for disability is designing accessibly. It's not curing

(36:21):
each individual person through medical intervention. I'm perfectly fine as
a blind person. The hardest parts of my life aren't
that I can't see the hardest parts of my life
are society's attitude and the inaccessibility I face.

Speaker 2 (36:44):
What are some of the other instances that you feel
like society could like just easy changes that you think
about every single day in your daily life that you're like,
how is this not fixed? Yet?

Speaker 1 (36:54):
Such a hard question because like there's so many And
here's the thing, Like I can only speak as one person.
I want to make it so clear that like I
don't speak for a whole community. I speak for myself,
my lived experience. What I really hope the non disabled
people in the room could do is learn, like seek

(37:17):
out the education. Don't remain willfully ignorant. There's no reason to. Now.
There are so many disabled content creators with different lived
experiences making free, entertaining content that you can learn from,
and it's so important that you do so because then
you don't make those awkward microableism mistakes. And when you're

(37:41):
in positions of power, like in the hiring room, or
when you're in the design room or you're writing those commercials,
you're making sure that you're doing it with intention and
that you're doing it right. At the end of the day,
disabled people also need to be in the rooms. That's
a huge thing. Like if you hire inclusively, you will
design better. If you hire inclusively, you will market better.

(38:04):
And right now companies are missing out on a huge
market because they just forget that we are consumers as
much as anybody else.

Speaker 2 (38:11):
And I think also, you know, we talked a little
bit about what was the hardest part about you creating
content online when you first started out, But I also
feel like, based on what you're saying, and like obviously
just knowing from experience, the internet can be both negative,
but it also can be so positive and it is
so cool and inspiring knowing that you were one of
the first blind creators on YouTube, you know, and I'm

(38:33):
sure you got so much positive feedback and it probably
gave you a sense of community that you didn't feel in,
you know, in I don't know if you grew up
in a small town, but like in a small town
or a city where you don't see yourself as represented.
So you know, what was that like for you finally
at a large scale, connecting with so many people that
have experienced disability and maybe a similar disability to you.

Speaker 1 (38:55):
The thing about representation with disability and why it is
so so important is that it's not just that we
don't see ourselves in media, it's that we don't see
ourselves period. We don't see ourselves in toy design, we
don't see ourselves in the accessibility of clothing or products,

(39:18):
in the accessibility of physical environments. We don't see ourselves
in real life like we don't. Growing up, I was
the only blind student at my school. I would go
to the shopping mall on the weekends, I was the
only blind person. I would go out for dinner with
my family, only blind person, Like I never saw myself ever,
And how lonely and isolating that feels. Is such a

(39:41):
huge way to bear at such a young age. And
that's the case for many disabled people because disability is
such a wide spectrum. Even now, I have so many
blind friends. We all have different lived experiences, we all
have different levels of vision loss, experiences of how or
when or if we went blind, or we're born blind. Like,
it's so so diverse, and if you're going to have

(40:02):
connections with blind people, you typically need to like really
seek it out. And having access to that depends on
where you live, as you said, like if you live
in a small or even rural community, access to in
real life community of blind people is going to be
next to nothing, versus maybe if you live in a
city like la or New York or Toronto, where there's

(40:23):
bigger community that you could find if you're intentional about it.
And so when I started making videos, it was incredible
to see so many people who said, like, I'm in
my late twenties or my thirties or even my fifties,
and I've never met another blind person in my life.
I have never felt so seen. That for me felt

(40:47):
so emotional because I did grow up in the suburbs
of Toronto. I did grow up doing activities for the blind.
I did briefly go to a school for the blind.
My family really immersed myself in the community, and we
were lucky that we had access to do that. And
so for me, I did grow up around plying people
my whole life in one way or another, even if

(41:07):
not on a daily basis. But to know that some
people in my community have literally gone forever never seeing
themselves represented anywhere, including real life ever, was so powerful
to know that I could be a part of bringing
that for them.

Speaker 2 (41:23):
Yeah, I mean, everybody needs to see representation online in
whatever way it is. And I feel like the hardest
part about your journey too, and what everybody lives with,
you know, regardless of having a disability or not, is
this idea of living with uncertainty, and yours was in
such a big way because you're born with this illness
and you know that with time it's almost like a
ticking time bomb and then you're going.

Speaker 3 (41:43):
To lose your sight.

Speaker 2 (41:44):
Right, So what was it like for you growing up
in those early years living with that level of uncertainty.

Speaker 1 (41:50):
My parents were always honest with me from the time
of my diagnosis, and of course I knew something was
going on. I've been seeing specialists since I was six
months old. I went to a children's hospital and was
always getting like exploratory tests and some surgeries, and I
knew that other kids weren't doing that. I knew that
was different. And then the older I got, the more

(42:13):
I knew I was different. As I started to learn Braille,
and I went home one day and I said, what's
wrong with me? Like why is this all happening? And
I was five years old, and my parents told me.
They just told me as it was, and I can
remember them teaching me how to say the word so
that if anybody asked me, I would know how to
say it. And Red Nights Pigmentosa, I would run around

(42:35):
like pig man, pig man. I thought it was like
the funniest thing that it has pig man in it.
And they got me like a little stuffed pig and
like it was you know, they just made it like
a normal thing. And I'm really grateful that they did
normalize that for me, and then it was something they
always told me about. I think there is so much
potential risk and harm in hiding a diagnosis from your child.

(42:57):
It robs them of community, it robs them of self standing.
Kids are way more perceptive than you may give them
credit for. This is a conversation that I frequently have
had with my ophthalmologist who sees all the time in
her practice parents wanting to not tell the child and
asking her to not tell the child. And these are
like eight, nine, ten, eleven year olds, and the future

(43:19):
is inevitable they will go blind. How shocking is it
if you give them no heads up? And the reality
is these kids can tell something's different. They know, and
so to hide that from them is I think detrimental,
and as does my ophthalmologist, and she's always like asking me, like,

(43:41):
how do I communicate this to these parents, like that
they will thrive if they are empowered with the knowledge.
And I think a lot of people fear diagnosis. The
word doesn't change anything. The symptoms are still the same.
The word actually gives you power because all of a
sudden if that if you find out you're autistic or

(44:03):
have ADHD or hearing loss or whatever it might be. Knowing, Okay,
there's a word for this thing that I'm feeling, and
I can find people who also have that word, and
now I have community. I have people who understand me.
I can understand myself and that I am not broken,
I'm not weird. There's nothing wrong with me. I just

(44:25):
have this thing, and what I'm experiencing is totally normal.
Given I have that thing, and that is power.

Speaker 3 (44:32):
It would be worse to not know what you were
dealing with.

Speaker 2 (44:35):
And if it was like this unusual thing that nobody's
ever had before and the doctors can't figure it out,
like that is really challenging.

Speaker 1 (44:41):
And when you hide it, it makes it a bad thing, right,
Like when you don't tell your child. You're making it
a negative, bad, taboo thing, and it's not. My blindness
isn't a negative, bad thing about me. It's a part
of what makes Molly Molly. And there's nothing negative about people.
Often I joke like blindness is like the B word.

(45:03):
They don't want to say it. The amount of people
that tiptoe around the word blind in front of me,
and I'm like, girl, I know I'm blind, Like I
use a guide dog and I read Braille, I know
I'm blind. You're not the one telling me. People tiptoe
around the word disability and find all these like stupid
ways to say it, like differently abled, handy, capable, and
it's like, no, I'm not differently abled. I'm disabled. And

(45:24):
there's literally nothing wrong with that. It's not a dirty word,
it's not a bad thing. It's a part of my identity.
It's a part of an identity that in many ways
I'm proud of. I embraced. It gives me community. And
when we ignore the words, when we tiptoe around it,
when we pretend the diagnosis isn't happening, and we shove
it in a closet and close the door, were intentionally
or unintentionally giving it negativity. We are assigning negativity and

(45:50):
taboo and badness to it, and so it's so important
to dispel that and say there's nothing bad about this.
It's reality. It's as much normal as having blonde hair
or brown eyes or being short. It's just a part
of life.

Speaker 2 (46:03):
Yeah, And I think it is so important to have
people like yourself saying that because it.

Speaker 3 (46:08):
Is hard, right, It's like you don't like as like myself.

Speaker 2 (46:10):
I'm like, I'm such a people pleaser, Like I don't
want to say the wrong thing, Like I don't want
to upset somebody, you know, just because I don't know.
But at the same time, like I like that you
said you like to educate people, So even if they
say something that like slightly triggers you, because you're like,
well you should know that, it is nice to have
you explain it, you know, because we all can use like.

Speaker 3 (46:26):
A little bit of teaching a lot exactly exactly.

Speaker 1 (46:30):
And that's what it is, Like, that's why I do
what I do because I realized people don't have access
to learn this. And because we had this kind of
society that essentially ignored and avoided disability, people grew up
not knowing, and now I want to give them that
safe space to be like, hey, safe space, like let's
talk about these things. And I want people to feel

(46:54):
empowered to reach out and to you know, talk to
us like I don't. I don't want to be ignored.
I want to be integrated into society. To me, inclusion
isn't giving disabled people a table. It's just having us
at your table. It's actually just having us involved. Inclusion

(47:16):
isn't having a disability panel at a conference. It's having
disabled people on the DEI panel, which for so long
we were completely left out of those conversations. And that's
what I'm advocating for. I don't want a special thing.
I want equal access to your thing, and sometimes that
just means I need accommodations.

Speaker 2 (47:36):
And You've been able to do so much good with
your platform, and I'm just so excited to see what
you continue to do.

Speaker 3 (47:41):
I would love to see you come out with like
clothing brands. Have you done a clothing brand before?

Speaker 1 (47:45):
I did a lot of merch, like classic old school
YouTuber merch, which I loved doing. I loved designing my merch.
It was really fun. I would have a lot of
like tactile braille and like really fun silly things which
I really enjoyed. But I haven't done that in many years,
you know, if the right opportunity strug.

Speaker 2 (48:01):
I just saw one of your last videos though, and
I feel like you might have been teasing something, right.
You were like trying on was it bras like different
bra tops or something or tank tops? I?

Speaker 1 (48:11):
Yes, I was trying I'm a bra hater, Okay, So
I was trying on like bra free brands, like brands
who claim to make clothing that you can wear without
a bra. So I was like giving it a go,
seeing what it was like.

Speaker 3 (48:22):
Okay, got it. I was like, is she teasing something?

Speaker 1 (48:24):
I don't know? No, I wish I was. Okay, I
wish I was. All right.

Speaker 2 (48:26):
Well, what I was getting to too is you recently
came out with a new book, Unseen Guys twenty twenty
five just launched, and the book is called Unseen How
I Lost my Vision but Found My Voice. Can you
talk to us a little bit about your book and
what inspired it?

Speaker 1 (48:40):
Yeah, So it's it's a memoir. I won't say it's
my entire life story. It's the stories I felt were
important to tell for the message I wanted to tell
with this book, which is really a conversation around themes
of representation, universal design, a lot of the stuff we've
been talking about today. And it's been really incredible to
see so many people in the disability community talking about

(49:04):
like how much it resonated with them and how validating
it was for them and their own life story. I'm
hoping more non disabled people will also choose to pick
the book up because it is a learning moment and
I like to think in a fun and entertaining, interesting way.
It's very my voice, Okay, Like it's super sassy. There's

(49:25):
a lot of like random side notes, and like it's
like really dry humor. So if you don't get sarcasm,
highly recommend the audiobooks so you can like hear the
tone shift. But I read the audiobook. Yeah, it's it's
kind of just about my journey from my first job
at fifteen to building my own business and moving to

(49:46):
LA and all the crazy Hollywood antics of trying to
make it as a blind person in the entertainment industry
and the ways in which kind of society's actions have
harmed or made my life harder.

Speaker 3 (50:00):
And we talked about this during The Runner.

Speaker 2 (50:02):
You mentioned this on the Run, but you had been
getting requests to write a memoir for a while and
about two years ago, right you finally were like, I'm
going to take on this journey and do it, write
and put the pen to paper. Why did it finally
feel like the right time.

Speaker 1 (50:15):
It's really funny going through all my twenties, people being like,
you need to write a memoir, and I was like,
I'm in my twenties, Like I can't write a whole
life story. And I even felt that in my late
twenties going into writing this book and turning thirty, you know,
you reach that end of the decade. And I looked back.
I started my YouTube channel at twenty, so I was like,
what have I accomplished in my twenties? And I was like, Okay,
I'm really proud of everything I've done. So what do

(50:37):
I want to look back at forty and say I did?
And I knew that to achieve what I wanted to
I needed to write the book, but I was still like,
I can't write my whole life story. And then I
met my incredible literary agent, Courtney, and she was like,
you don't have to. You don't have to write your
whole life story. A memoir doesn't have to be everything.
It can just be like whatever you need to tell
for this. And so I wrote it, and I honestly

(50:59):
didn't even know necessarily what it was going to be,
what it was going to become, but it became the
book it needed to be. I think other themes, really
universal themes, are like the theme of duality, that good
and bad coexist in all of our lives and that's unavoidable.
I used to think that I went through my midlife
crisis early and I was like, good to go. And

(51:22):
the more I continued to face challenge and have those
those really hard periods, the more I realized that, no,
that's actually just life. Life is a series of challenges
and figuring out how to navigate and overcome and adapt
and pivot and build strength and resilience every single time.
And that is something all of us have to face

(51:42):
in our lives, no matter what your circumstances. So a
lot of duality is also throughout the book. I think
a lot of what I talk about is shared minority
experience as well. I've had a lot of like other minorities,
whether it be people of color or people in the
LGBTQ plus community say like, you know, I'm not disabled,

(52:04):
but as a minority, like I felt like I have
so many of the same feelings and that's the reality
is like the minority experience is a shared experience. What
we're all looking for is equity in this world. And
the reason we need it and want it might be different,
but we want the same goal and I really believe that,
like coming together, we are so much stronger.

Speaker 2 (52:35):
What was something that you left out of the book
that you're still itching to talk about.

Speaker 1 (52:41):
I plan to write a whole book on dating, romance,
love as a blind person. So I didn't talk about
that at all in the book because I have too
much Like that is a whole memoir just on dating,
love and relationships. So that is like you know in
the back, gotta do that.

Speaker 2 (53:00):
Yeah, And you post a lot of videos on dating
as a blind person, right, yeah.

Speaker 1 (53:03):
I do. It's definitely something I've talked about throughout my
whole journey on the internet. I now talk about being
in an interabled relationship. My partner is cited non disabled.
Obviously I'm blind and we live together, we often work together,
so kind of sharing our experiences as an introbled couple,

(53:23):
which is another thing that you know needs representation. There's
not enough talked about from that perspective.

Speaker 2 (53:29):
That would be such a good memoir, and people would
be so interested in just seeing, Like the views on
those videos, you can tell that people want to know
about it.

Speaker 1 (53:35):
People love the love. Everybody loves love.

Speaker 3 (53:37):
Yeah, they love the personal life the love.

Speaker 2 (53:39):
What was the hardest thing for you to write in
this memoir, Like, was there one chapter topic that you
had a hard time writing and putting into words.

Speaker 1 (53:47):
I think it was realizing that people will read what
they want. I can write it with the intention of
how I would like people to perceive my words, but
that doesn't mean that's how they will receive them, And
that's a hard thing to deal with. I'm so used to,
like over explaining myself on the Internet because I've seen

(54:11):
so much of how your words get taken out of
context or twisted and misconstrued and somebody reads something into
it that you didn't mean at all, And so I'm
like always over explaining myself. But with a book, I'm
not going to do that, Like, I don't that takes
away from the interesting literary experience, and so I didn't
over explain myself, which was really hard for me, to

(54:31):
just be like, you know what, I'm going to put
it in a way that makes sense to me and
hope people understand what I'm saying. And if they don't
and they misunderstand, I can't do anything about that. Also, knowing,
like a YouTube video I can delete, a book is
out there forever and it is a time capsule of
my thoughts and feelings and beliefs at that time. But

(54:52):
that doesn't mean if somebody picks it up in ten
years and reads it, they'll realize that, like I might
have completely changed my mind just and the eleven years
I've been posting on the internet, I've absolutely changed my
mind about things. But if you read the book in
ten years, you will assume that is still how I feel,
even if it's not. And all of those things are

(55:12):
really big things to wrestle with. The other thing that
was hard for me was realizing that in order to
write an authentic, honest, powerful memoir like I wanted to,
you need to be brutally honest, which means not painting
yourself out to be an angel. It means sharing embarrassing

(55:33):
parts of yourself that we've been taught to hold shame
over and sharing them honestly and being like this is
just who I am, and like, yes, I have made
these mistakes and I'm not proud of them, but I'm
still telling you them. I'm not going to hide them.
I'm going to be completely transparent, because that's what makes
a good book is being like, I'm human and humans

(55:55):
are flawed. I'm not perfect, and that's the real life
experience and realist like our failures and our flaws are
really where we learn the most.

Speaker 2 (56:03):
Yeah, And I feel like that's what makes an influential
person is being able to show people that you aren't
perfect and you are a human and there's things that
happen to you, the good and the bad. Right. I'm
curious for you, like, you know, looking at your life
now and how everything has transpired, and you know everything
that you do, do you feel like looking back at
your childhood it makes sense what you're doing now.

Speaker 1 (56:24):
I am so confident that I am exactly who I
was meant to be, and to have such conviction of
your purpose and your position in life is such a gift.
And that gift is because of my blindness, and I
think we often in society look at disability and we
only see the negatives. There's so much beauty that comes
with this experience if you choose to look for it.

(56:46):
And I am so grateful to be in the position
that I am. And I know that whoever the heck's
out there in the universe, whatever you believe in, like
I was designed this way for a reason, and I'm
going to continue to follow that path and just trust
that it's all going to work out. That's all I
can do is trust, because I don't have a crystal ball.

(57:06):
I've learned time and time again I can't control most
of what happens in my life. I just need to
surrender and go with it and trust that even when
I don't see it, it's pushing me in the direction
that I'm supposed to go.

Speaker 2 (57:18):
And I feel like the really beautiful thing about you
is just knowing that you're a voice for so many
people other than just yourself, which I think is really
really powerful when it comes to being a speaker and
being an author and being a content creator.

Speaker 1 (57:31):
It's also something that like I take so seriously and
like honestly weighs very heavy on me constantly thinking like
like I'll think of a like fun video idea and
then be like, Okay, but how might that harm my community?
Like I'm always like taking my responsibility to do right
by my community so seriously, and that's like a very

(57:52):
heavy weight to bear that I don't know that I'll
ever fully be able to remove, because, as you said,
my work is so much more than just me, Like
I'm not here telling you like by this lip gloss.
I'm telling you like change the way you view disability
and like reassess how we design products and like really

(58:13):
big things that are super heavy. And I take that
so so so seriously.

Speaker 2 (58:18):
You guys know that I'm pregnant. I'm fifteen weeks pregnant
with a baby girl coming in June. Mollie was talking
about and you posted a video on this recently saying
you don't want to have kids, So talk to us
about why you don't want to have kids.

Speaker 1 (58:32):
Another thing that I think we need more representation on,
like more women coming out and just like being able
to confidently say they don't want kids and there being
no like shame or guilt around that. So I talk
very openly about the fact that I don't want kids.
And there's a lot of reasons, but I think one
big one is to be honest, like, most of my
childhood was pretty traumatic. I had a really hard childhood

(58:55):
and there was great, beautiful moments within that. I have
a credible family. My parents are my best friends. My
brother is such a superstar, like I adore my family.
They were my bright spot. But I had an overall,
like a pretty hard childhood. And to be honest, like
my adult life is for me, like I am healing,
I am living my adult life getting to have the

(59:19):
care free joy and freedom that most kids get to experience,
because that's what childhood is like, just being this care
free freedom child who just gets to be innocent. I
wasn't innocent. My innocence was absolutely robbed for me. Very
young life was not care free. Ever, when you're going
blind actively your whole life, that ain't care free. And

(59:41):
I want to live my adult life for me. A
lot of my work is for other people, you know,
a lot of my work is about so much more
than just myself. And so even in work, I feel
like I'm giving so much and that doesn't mean I
don't receive a lot from it. It's a gift, but
my life. Truly, I feel like in adulthood, like I

(01:00:04):
just need it to be about me. And if that's selfish,
fine let it be, because I know that I'm not
a selfish person overall, but I really need to just
like live for myself. And I also do think that, well, yes,
there is a chance that raising a child could heal
my inner child. I don't want to have a child
to heal myself. The risk is also there that raising

(01:00:28):
a child could also dredge up a lot of my
own trauma that I've chosen to file away and forget about.
And I if, like if I had a daughter and
she was being bullied or like struggling with stuff like that,
like that would just weigh on me so heavy and
like bring up a lot of my own trauma. Again,
I don't we don't need to bring up again. Like,
I just feel like I want to be a cool aunt.

(01:00:50):
You know, I just had a niece. My partner has
a niece and a nephew. Like I just want to
be a cool, fun aunt to them and to my
friend's kids. And I want to continue to live a
life of purpose with my work and live a life
of fun and freedom and joy and innocence when I'm
not working, and like live the life that I didn't
get to as a kid. And I ultimately, overall like,

(01:01:13):
if I could sum it all up, I would rather
regret not having kids than regret having kids, because one
implicates an innocent child who did not ask to be
brought into this world. And sadly, I think too many
people idealize having a child, and I think a lot
of people are guilty of being like, oh, I hope
they have your eyes and my smile and your sense

(01:01:34):
of humor, and they don't talk enough about and what
if they have down syndrome and what if they get cancer?
And what if they struggle with depression or develop an addiction?
And those are equally real things that can happen. And
I've seen too many people in my community born with
a disability, who are put up for adoption, who are

(01:01:59):
sent to institutions. I have been told to my face,
you're so lucky your parents kept you. I wouldn't keep
a disabled child. That's the reality. If you choose to
be a parent, you choose to be a parent if
the child is disabled or not. And so for me,
like it just breaks my heart, and yeah, I just

(01:02:21):
think it's it's so unfair how much we idealize children
instead of looking at at it realistically. And when I
look at it realistically and really like sit with myself
and say, do I want kids because society is saying
it that that's like the path we're supposed to go
on and check all these boxes, or do I molly
want kids? When I sit with myself, the answer is
I molly do not want kids, and so therefore I

(01:02:44):
shouldn't have them.

Speaker 2 (01:02:45):
It's obviously very responsible thinking, and I agree. I think
more people should think that way and think about it
really hard before trying to have kids or getting pregnant
or having kids.

Speaker 1 (01:02:54):
But lots of parenting books, but there is no parenting
books for raising a disabled child or very if you
there certainly wasn't any around when my parents were raising me,
and like my parents got thrust into this, like you know,
like six months old, my granddad was like, I think
something's wrong. And then four years old we finally had
all the diagnoses and they just had to figure it out.

(01:03:15):
And hats off to them, like they did an incredible job.
My mom and I actually really want to work on
a parenting book, not as parenting professionals, but it's just
like more like a mother daughter memoir that shares our
experiences of you know, raising a blind daughter. And yeah,
because it's there isn't enough information and access and parents

(01:03:38):
are their kids first teacher, and parents can either instill
internalized ableism into their child or they can raise an empowered, confidence,
strong disabled child who does not believe that their disability
is a negative, bad thing. And that is so important
and so finding. I always encourage parents, like, yes, it's

(01:04:00):
great to watch content from other parents of disabled children.
It's great to be in support groups of other parents,
but you need to be reading, watching and learning from
disabled adults because we are the ones with the lived
experience and we are the ones who can actually tell you,
like what words we do and don't like what like

(01:04:23):
get into the nuance of like disability rights movement, uh,
social verse, medical model, verse, charity model, you know, like
all of those things, like really nitty gritty stuff that
actually matters.

Speaker 2 (01:04:33):
Molly, knowing what you know, now, what would you tell
your fourteen year old self.

Speaker 1 (01:04:40):
She needed so much support? I mean, first off, I
want to give her a hug. All the time my
mom and I talk about, like when we look back,
I don't know how I did it, Like God, I
could never do that again. The fact that when I
see fourteen year olds now, I'm like, you're a baby.
Like the fact that I did that at fourteen, I

(01:05:03):
do not know how I did it. And so I
first just want to give her like the biggest hug,
and I would just tell her like hope is one
of the most powerful things we have, because sometimes that
is all you have, Like hope was the only thing
that got me through, Hope that there would be better days,
hope that my life would get better and change, and

(01:05:24):
that things would get easier, And so hold on to
hope when you've got nothing else left.

Speaker 2 (01:05:29):
Well, thank you so much for being on post run
high with me today. I hope you're feeling good and
I am so excited to dive into your book Unseen.

Speaker 1 (01:05:38):
Thank you. I'm ready for a post run snack.

Speaker 3 (01:05:40):
I know same, I'm in a post run bathroom break,
because girls gotta go. Both girls gotta go.

Speaker 2 (01:05:51):
Thank you guys so much for listening to today's episode
with Molly Burke. If you loved this conversation as much
as I did, Please make sure you follow the SHO
show wherever you're listening, and if this conversation spoke to
you and you think it could help somebody else in
your life, please share this episode with them. Your support
helps us continue bringing you inspiring conversations. I hope you

(01:06:14):
guys are enjoying Season two of Post Run High so far,
I know we are. My team has loved being in
California and we cannot wait to see you next week
and show you who's coming on the show.

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.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}Molly Burke: What People Get Wrong About Blindness (and Accessibility)