June 25, 2023 • 47 mins
When parents have children with disabilities it can be challenging to figure out what your identity is. Oftentimes, sometimes unintentionally, parents tend to take on their child's disability as their own identity. This, however, can not only be detrimental to the family and child, but it can also be detrimental to the disabled community. In this episode on The Bitching and Bolusing Podcast we sit down with Wes from Wes of Disabledland and discuss some hard hitting, sometimes uncomfortable topics and insights. Wes offers us his views on how there should be a shift within the parenting community that could better empower the disabled community, and how both communities are not one in the same.
Please be sure to visit Disabledland Shops!
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:01):
You are listening to the
Bitching and Bolusing podcast
with Courtney and Brittney.
Hi guys.
Thanks for listening to the
Bitching and Bolusing podcast.
I'm Brittney,
I'm Courtney.
Today we have a special guest
on the show,
Wes,
some of you may know him from
his social media account,
Wes of Disabled Land.
(00:22):
Wes is an outspoken disability
advocate,
especially for disabled
children and youth.
He's passionate about his
advocacy work and firmly
believes in equity for
disabled children.
Wes is the founder and creator
of Disabled Land and he's a
clothing designer focusing on
disability rights.
He's also a talented artist.
Wes is a disabled actor and
believes that representation
is extremely important.
(00:44):
Recently Wes took on the role
as moderator for a well-known
disability account,
which he wishes to keep
anonymous.
Unfortunately,
he's had to moderate some vile
and unbelievable comments and
interactions,
which further instills his
belief that parents of
disabled children should
respect the privacy and
autonomy of their children on
social media.
Thanks for coming on the show,
(01:05):
Wes.
We're so excited to have you
here.
Hi,
I am excited to be here.
I am so excited to hear what
you have to say today.
Wes you are one of the
accounts that I absolutely
love that I found,
which I found through Britney.
By the way,
if it wasn't for Britney,
um,
I I really wasn't scouring
social media for accounts that
(01:26):
were like yours.
Uh,
which is kind of embarrassing
a little bit.
But once I did discover your
account,
it's,
it's by far one of my favorite
accounts on Instagram right
now.
I,
I'm not entirely sure how many
accounts there are that are
exactly like my account.
There are many that are
similar but have much larger
followings,
(01:46):
both cuz they have worked very
hard and both because I tend
to not care if people follow
me or not.
I actually wanted to touch on
your social media account
specifically Instagram and how
you've mentioned before that
you're,
you feel like you are not even
sure how to describe what it
is you do on social media.
(02:08):
And maybe for the listeners
that don't know you,
can you give a little
background of how your account
has transformed?
You know,
I've been thinking about this
the last couple days since I
knew I was gonna do this.
I can't tell you how this
started.
I know I started before the
world went crazy and shut down
for the pandemic.
As a disabled person,
(02:28):
I was always looking for a way
to make money.
I was always playing with like
t-shirt merch and like print
to order stuff and things like
that.
But I genuinely can't tell you
how this started.
I genuinely can't tell you.
When I started doing Disabled
Land as its own account,
I cannot for the life of me
remember how I started doing
this.
To me,
you are the image of advocacy
(02:49):
for privacy and autonomy and,
and other things related to
disabled children.
But for me that that's what
you stand for And it,
it's,
it's such an interesting
dynamic that you unofficially
kind of fell into that role.
This is gonna sound awful,
but keep in mind I grew up in
the eighties.
I was born in 76.
I grew up in the eighties.
I grew up in the nineties.
(03:10):
The only disability
representation of any kind was
awful.
Mm-hmm the only disability
representation in the media
was awful.
I walk with a heavy limp.
My cripple credentials are,
I was born with
Arthrogryposis.
The only disability icon I had
when I was a little kid was
Terry Fox.
When you walk with a limp and
(03:31):
the only other person in the
media that like re that the
other able bodied people are
seeing also walks with a limp,
you automatically get called
that motherfucker.
It doesn't matter.
Little girl in a wheelchair.
For some reason idiots think
it's real funny to refer to
her as Hector Guro from uh,
breaking Bad.
Don't Know Why.
(03:51):
I don't know how I started.
I didn't particularly like
disability representation.
The point where I started
thinking I need to do more in
this community came for my
birthday.
My best friend and I went to
Niagara Falls.
It was kind of a ritual.
We had stayed at the uh,
double Tree Hotel.
Can't recommend it enough.
Niagara Falls,
Ontario.
I don't know what the American
one is like.
(04:12):
I ran into this little kid and
his cousin there.
He was bouncing around the
pool and he had the heart
surgery.
Scar got talking to him and
his cousin I think was his
cousin or his sister and he
was a sick kid's kid.
Well,
I was a sick kid's kid.
Sick kids is the major
hospital in Toronto,
Ontario one of the best
(04:32):
hospitals you can go to if
you're a kid with a disability
or illness Best in the world.
Quite frankly,
he was actually part of the
Sick Kids versus marketing
campaign that they do to
fundraise for their new
hospital.
Now,
if you don't know about the
Sick Kids Marketing campaign,
the Sick Kids versus campaign
post a link to it.
It is the single best
(04:54):
representation for disabled
sick children that there will
ever be.
They will take representation
of children and and for their
parents,
quite frankly.
They will take representation
of children that are literally
dying of cancer and turn them
into absolute badass.
Not downplaying the situation,
not downplaying how sick they
are,
but there is zero pity there
(05:16):
is zero.
Oh look at this poor thing.
It isn't like,
oh we need to build this
hospital for these poor sick
children.
It's why the fuck haven't we
built this hospital already
for these mm-hmm incredible
kids that need this and maybe
this doesn't have to be all
this weak ass victimization
(05:38):
crap that I'm seeing.
Then I just kind of started
talking and quite frankly
motherfucking people online,
it just kind of ruled from
that.
So I know that there's a
growing presence on social
media of parents and,
and accounts for their
(05:59):
disabled children and I know
that there is a way that it
can be done well and then
there are many accounts out
there that are not doing it
well at all.
And I'm interested to get your
opinion on what you're seeing.
You're also moderating so
you're having to deal with um,
comments and messages from
people that the,
(06:19):
the account you're moderating,
they don't even really post
like the medical side of
things,
but there is a responsibility
on parents to protect and
maintain privacy for their
children.
And I think that there is some
level of that not happening
within the social media world.
And I just kind of wanna get
your side of it because you
(06:40):
grew up in the eighties so
there wasn't social media as a
disabled adult and a disabled
man seeing this and seeing
parents not respecting the
privacy.
Do you have a feeling towards
that With that?
Uh,
first of all,
I'm gonna come in real hot on
something because I did listen
to your very first episode and
I kind of wish that I was in
(07:01):
the second recording because I
want to come in hot on
something cuz the two of you
were very wonderful and
diplomatic as far as the terms
special needs.
You don't want to tell anyone
that it's wrong and I just
wanna come in real hot and say
West of disabled land is
saying it is absolutely wrong.
The term special needs belongs
in the dumpster.
(07:22):
It is a garbage term.
If you are the parent of a
disabled child and you are too
goddamn mortified,
embarrassed or ashamed that
you cannot even speak the word
disabled,
you have a big problem.
You are using that special
needs term.
You were a telling your dis
you think there's something
wrong with your child being
disabled.
You are telling your disabled
(07:43):
child.
You think showing them that
there is something wrong with
them being disabled and you
are showing the world that
there is something wrong with
the term disabled.
On top of that special needs
don't actually exist.
What you're calling special
needs are your kids human
rights to all these things.
Both of you have had to fight
(08:04):
for it for your kids.
When you call that and other
disabled people start dog
piling on you and I come on
and start politely
motherfucking you.
That is because not only are
you fucking over your child,
you are fucking over every
disabled child.
You are making it harder for
you to get their shit,
the shit they need.
You are making it harder for
(08:24):
them to eventually get those
things they need because this
isn't just either they're
like,
oh,
I can call my child whatever
you want.
You might think that,
but you're not just messing
with your kids' future,
you're messing with all our
futures.
This is not a game.
This is not a silly little
word play.
These are our human rights
(08:45):
that you are fucking with on a
daily basis because you can't
suck it up.
Be an adult and say the damn
word.
What you guys are hearing
right now from us Is exactly
why for me,
your account and your voice on
Instagram is so important
because when we,
me and Brittney,
even in that other episode
where we kind of bring up
special needs,
(09:06):
it's more of us trying to be
like respectful of the
caregiver parent journey.
Cuz I know I was reactive to
the people saying that I can't
use the word special needs And
full disclosure,
I like when Cyrus was first
born.
I 100% used that term until I
was like,
oh this and it never felt
(09:26):
right using that term,
but I it didn't,
Yeah.
I mean like I had like hashtag
special needs and now I look
back and I'm like,
oh God,
I was that person.
But we feel the same as you
about the word.
We Do not like it.
Oh no,
I know,
I know,
I know you do.
I fucking hate that word.
(09:46):
It,
I was listening and I'm like,
yeah,
they're being very diplomatic.
They're waiting for me to come
in.
Both of you do your accounts
very well as far as kids with
disabilities being online.
It is just,
here's my kid,
here's my family.
We talk about these things a
little bit,
but it's not the whole damn
thing.
My deal is with a lot of these
accounts is what are you
(10:08):
trying to accomplish?
Large portions of the world do
not give a fuck about your
disabled child.
They don't care.
Yeah.
They do not give a shit.
They see that once again,
why we don't say it's a
special need.
They see them as a tax burden.
They see them as in the way,
why should my tax dollars pay
for this?
Why,
why should anything I might
(10:29):
have go to them.
They're never gonna be able to
work,
they're never gonna be able to
do anything.
They don't produce anything.
They're seen as baggage.
Yeah.
They're seen as baggage.
They're seen as garbage.
This Is an issue that I have
too with like people who
really focus on the tragic
side of it is that you are
(10:50):
going to have people come to
your account,
especially if you have a,
a larger following and they're
gonna see this tragedy that's
going on,
right.
Like the the medical stuff.
The hospital stays this and
that.
At some point there are going
to be people where God forbid
if your child dies,
they're gonna think like,
oh,
at least that person's not
(11:11):
burdened anymore.
And I I could never deal with
that.
I could never deal with anyone
thinking that cyrus's like
death lightens my load.
It's creating this entire
facade when you're focusing on
the negative and the trauma
and all of this with people
who don't deal with
disability.
It's creating this entire
(11:32):
illusion that it's a burden.
Yeah.
And there's this genuine idea
that,
oh,
if I just plaster my disabled
child everywhere,
I'm gonna change the world.
Mm.
Yes.
Yeah.
I am gonna make these people
give a fuck about my disabled
child.
Yes.
But it's not them.
It's their sick kid.
That's the difference.
It's not the parent changing
(11:53):
the world,
it's the picture.
Like it's their kid.
They're putting it on the
backs of their kids who are
bagged in ambulances who are
getting poked and prodded in
hospitals.
So that's my issue is that
it's not the parents changing
the world.
If you're posting a picture of
your kid really sick in a
hospital,
that's your,
you're you're putting that on
your child.
You're also not changing the
world at all by doing that.
(12:13):
You're,
you're just exactly,
honestly compounding the
problem and creating
aspirational porn And then
they get a taste for it.
They get the likes and the
followers.
Mm-hmm.
it becomes more and more and
more of the sharing.
It's Like a reward.
Yeah,
Exactly.
It it's,
you just published your baby
half dead on TikTok.
(12:33):
What are we doing?
And I wanna put this in
perspective for all the
parents.
This is the perfect chance to
do this.
I want you to imagine not even
getting old tomorrow.
Something goes wrong,
you have a massive stroke,
you've got a blood clot in
your brain that no one knew
about that's been there for
years and one day it just pops
(12:54):
and all of a sudden overnight
half your body is paralyzed.
You lose your ability to
communicate,
you lose the ability to take a
shit on your own.
You were basically knocked
back to toddlerhood.
How much of that do you want
on Instagram?
Mm-hmm.
do you want yourself laying on
(13:15):
the couch half naked in a
diaper?
It's such a valid point.
Drooling away.
Do you wanna be a special
needs adult?
Do you want your child no
longer referring to the taking
care of you no longer
referring to themselves as a
child,
but as an autism child or a
stroke survivor child,
(13:37):
you are not raising a rare
disease.
You are raising a child.
You are not a,
and this and Courtney,
I'm sorry,
you are not a caregiver.
You are a parent.
I fully admit you have a whole
shit ton more responsibilities
than the average parent.
But you are a parent.
You are not a medical
(13:57):
professional.
And So this is where I have a
hard time with the caregiving
thing because there are laws
in place,
there are bills in place.
There are certain states in
the US cuz we are in the US
uh,
west is in Canada.
But there are certain states
in the US that do offer
caregiver insurance for
parents that cannot work
(14:18):
because they have to stay home
with their kids.
I mean there are a lot of
situations where daycares
won't take disabled kids.
So I think that there's like
this dichotomy of that term is
important in certain
situations.
But I do have a big issue with
parents referring to
themselves as that in just
like everyday life.
(14:41):
Fill the paperwork however you
need to.
Mm-hmm.
I sound like I have no
sympathy for the struggle of
any parent dealing with this
stuff.
I have nothing but sympathy.
But there is also a difference
between,
for me of pushing for
advocating for a disabled
child and advocating for
parents.
(15:01):
I say it straight out.
Yeah.
Your disabled child,
you,
your,
your,
your child's disability is not
your identity.
Mm-hmm.
Yeah.
When you go out without them,
no one is staring at you.
Yeah.
And listen,
these are hard pills to
swallow.
This is,
this is not easy for being on
this side of things.
It's not easy to hear.
It's really not.
I was very combative myself.
(15:22):
You know,
it's like hi,
it's me that,
that was me that you're
talking about.
You know,
and me still to some certain
extent,
which is why I just got called
out about the caregiver But
realistically right Wes,
you're not wrong.
And realistically my son,
he doesn't see me as anything
other than mom.
Right.
Right.
Like yes.
That's the damn truth.
So me sitting there and giving
(15:42):
myself all these additional
labels,
who am I doing that for?
Who,
who is that for?
You know,
sometimes you need to take
that step back and think about
why am I calling myself that
And you know,
I'm just starting on the
caregiver journey.
I'm almost there Wes,
but I'm not there yet.
It's,
it's why I come in so bluntly
(16:04):
and like brutally cuz it's
like people,
it's like the only way people
get it is that shock to the
system.
Mm-hmm Yeah.
The moderation gig that you
have is uh,
we'll we'll keep everything
anonymous,
but it's for an account and
um,
the child on the account
consents to everything and
it's very cognitively aware.
(16:26):
Um,
all that.
I don't even wanna like say
the gender cause I don't want
people to So I'm trying to
think before I speak.
It is an account for a
disabled child actor.
Mm-hmm a disabled child,
YouTuber.
Um,
very much the thing that they
want to be doing.
I've talked with them,
but Wes you say these accounts
are horrible and you're
working for one.
(16:47):
And that's actually how it
started.
I was talking with the mom and
it was like,
I don't necessarily like that
this child has almost 50 K
followers.
I don't particularly like that
we've reached almost or just
over 2 million people in the
last month.
However,
if you're going to do that you
(17:09):
need to moderate Mm mm-hmm it
was a six month,
like a six month discussion
about um,
me becoming the moderator and
possibly working and whether
or not I wanted to do that.
Just cuz the issues I have
with this whole concept of
going through and like saying,
okay,
well you've got this comment,
this comment and this comment
from like six weeks ago that
you've never seen because you
just,
you don't have time.
(17:29):
You're a full-time mom.
You have you're disabled child
plus three other kids,
you're running your child's
career and it is a career for
them.
They are a paid actor.
The kid is making money.
Most of the money goes to the
kid.
You guys have small enough
accounts at this point because
you haven't tried to grow,
get huge and big.
(17:50):
Hopefully the podcast will,
but your private accounts
don't need to.
Definitely not I have no
interest.
No,
I really rather it don't I'm
currently mentally prepping
myself right now cuz I know
the next video that goes on
the account,
we figure it's gonna be
another one that goes viral
because it,
it's to do with the airlines
and airline wheelchair damage.
And keep in mind I just
(18:11):
moderate the Instagram at this
point.
We're talking about me also
doing their TikTok,
which I'm dreading cuz even
the mom says like the TikTok,
I've had to turn comments off
on things cuz it is just a
nightmare.
TikTok is brutal.
It really is.
I,
I have said and the parent
knows this,
that yeah the parent may be
paying me,
the parent may have hired me.
(18:32):
I work for the kid if the mom
and I disagree on something on
whether or not a kind of post
should go away or usually I
will explain why I think the
kind of post should go away.
But it's kind of an
understanding of I work for
the kid.
If I think something needs to
go away or someone needs to be
(18:52):
blocked,
they're going away.
They're going to be blocked.
If that is an issue,
we can talk about it and you
know,
you can fire me.
But you know,
once again,
it's not just about your
child,
it's about all the other kids
reading this.
I don't want some other kid
reading this and thinking that
it's okay to,
you know,
defend disabled kids and then
(19:13):
talk about trans kids.
Like they're trash.
This is kind of an issue that
I have too is turning all of
that hatred into content,
which I know some parents will
do.
And listen,
I absolutely,
I love like calling the trolls
out publicly.
I think they need to be
blasted.
Like I'm all about that whole
(19:33):
like get them fired life type
of thing.
But at some point either these
children are gonna be older
and will read all of this or
other kids will,
or like even parents or
siblings might see all this
hatred.
And I have a hard time with
the turning hatred into
content.
Well and I think a lot of
(19:54):
people use the hatred also to
push their own agenda even
though they front it like
they're doing something good
for the disabled community,
but it's actually not,
it's more to get more
followers.
It's more to get more exposure
for themselves.
And I think there,
there might be a level they
don't recognize that but it,
it definitely happens.
Well The,
(20:14):
the account I work for,
she has said that like I do,
I I I call the trolls out less
and less now because she has
literally had trolls message
her later and say Hey thanks
for making me a video.
Ah yeah look at that.
Which is why now like it
pretty much,
you know,
the name has always fuzzed out
and things like that because
that person has already been
blocked.
(20:34):
That person has already been
removed from the conversation.
The kid I work for is aware
there are trash people out
there.
Mm-hmm because they'll get the
trash people in real life.
Right?
Yes.
It's not just an online issue.
All the crap your kid gets
online,
they're still just gonna get a
different version of it every
(20:55):
time they leave the house.
Mm-hmm they're aware of it,
they know it's there and now
you can tell 'em it's like
okay this shit is being said
but you've got someone that is
making it go away.
Yeah.
Mm-hmm not so much for your
benefit but for the benefit of
your fans.
For the benefit of the people
going in reading it and for
the benefit of other disabled
(21:16):
kids that might not be
necessarily aware of it yet.
Yeah.
And once again,
why are you calling them
special needs as if that is
somehow going to protect them.
It's not simply changing the
language to something you
think is softer doesn't do
anything.
No,
you just made me think of
something I wanted you to
touch on.
Is the echo chamber of these
(21:39):
support groups or just in
general on social media
especially I feel like we are
talking more about moms than
dads because moms seem to be
just more actively involved in
the social media aspect of
quote unquote raising
awareness of my disabled child
or et cetera,
et cetera.
But you talk a lot about that
(22:00):
echo chamber effect.
Do you wanna talk a little bit
about it now to our listeners
Here?
Here's what happens.
And I think both of you can
probably identify from this,
from listening to the first
episode of all of a sudden
you've got this disabled baby
that dude didn't plan on
having and all you want in the
world is for someone to tell
(22:21):
you that you did nothing
wrong.
It's,
and I'm right out saying right
now I am not saying you did
anything wrong.
I am not saying any disabled,
any parent of a disabled child
did anything wrong.
It just happens.
So you go searching for that
and you they,
you fall into one of these
(22:42):
groups and because all you
want to hear is that you did
nothing wrong and that
everything is going to be
okay.
I think in terms of that it's
not just being told that
parents did nothing wrong or
mothers did nothing wrong.
I think it's also the
validation side of things.
I think parents have to feel,
especially if like parents
(23:04):
gave up a career,
they gave up traveling or or
hobbies or anything like that.
They need to feel so validated
in all of these quote unquote
sacrifices that they're having
to make.
And I don't wanna say they're
not making sacrifices,
but it's like kind of comes
with the whole job of being a
parent to some extent.
You're gonna make sacrifices
as it is.
It's a really harmful
(23:26):
narrative because parents are
very publicly vocal about how
much they have to go through
and how much they have to
sacrifice.
And I really sit back and I
wonder what does this
narrative do to the disabled
community that's adults and
(23:47):
now they're having to sit back
and think like,
holy shit,
did my parents feel that way
about me?
And I think there's such like
this narrow mindset of well
this only affects me and
parents that have kids that
are like the same age of my
kids.
Or like this doesn't affect
the adults that are cognitive
and can understand all of
(24:07):
this.
And would you agree with that
and think that this whole
narrative and this whole echo
chamber and all this is like
really,
really harmful to not just the
disabled community but also
like to the mental health of
adults.
Absolutely.
The one thing,
um,
every parent of this disabled
kid needs to learn real fast
(24:28):
is that you will never
understand what it is to be
your disabled child.
Mm-hmm.
no matter what,
no matter how hard you try,
no matter how hard you think
you can,
you're never going to
understand it.
Just like they are never going
to truly understand.
Mm-hmm your birth trauma,
(24:50):
your sacrifice,
things like that.
And I'm not saying that there
isn't a sacrifice there
obviously is,
and I'm not saying it's not
harder to raise a disabled
kid.
It obviously is and there's
things you have to do that no
other parent,
no other parent of an able
child has to do that you don't
have to do with your able
kids.
Mm-hmm and that's its whole
other thing.
(25:11):
But there becomes this merger
of the think the identity.
Oh well yeah,
I'm a disabled mom,
I'm an autism mom like Cyrus,
Cyrus exists in the world.
Mm-hmm.
And Courtney,
I apologize,
I'm talking more about
Brittney just because for some
reason I am just less aware of
your account.
I dunno why.
I dunno.
(25:32):
I mean I know I've been there.
I know I've seen it.
I know it's not problematic.
You Would've had problems with
my account though.
I'm just gonna put that out
there.
There were plenty of Things
and I think you've probably
had problems with my account
in the past too.
I mean this is all a
progression through,
I don't wanna say the journey
but like a progression through
the journey.
Right.
Like,
(25:52):
I mean I'm sure I would've
like back before we met if I
went,
you know,
but one of my sick kids,
kids,
not the one that got me
started in this,
but the mom,
she overshare a lot and I
cringe a lot and I just,
I can't bring myself to
unfollow cause I've been
following the kids literally
since birth and the surgery
and everything.
It's just one of those things
(26:14):
of I just,
I bite my lip a lot of times
then every once in a while I
can't.
And she posted this pick of
him in the living room with
all his scars and that,
which no problem,
I don't care about showing,
showing the scars,
whatever.
But the kid happened to be
naked at the time and she just
put a star over his wiener.
Oh no,
(26:34):
What are we doing here?
And she was like,
oh,
oh shit,
you're probably right.
And that pick went down.
I'm like,
this crap gets screen capped.
Yeah.
And stolen all the time.
The internet is forever,
Forever A,
the internet is here forever.
(26:54):
B,
what the hell are you doing?
Being called out and being
confronted with these sorts of
topics as a mother and as a
parent is can be really
difficult to accept and to
kind of really,
truly listen.
And I'm sure we're gonna push
a lot of people away.
I'm hoping we push them away
to think and then they come
back.
That's my goal here.
(27:15):
you know,
it,
it's a really tricky thing.
You know,
we're talking about things
that are hard.
Mm-hmm to hear it is really
hard to hear it.
But you know,
when you do sit and you take
this information and you sit
with it for a little bit,
the hope is that you get to
that point where you see that
there's,
there's so much truth and
logic to what we are saying
(27:36):
and this,
these are real issues.
This is not just about your
social media account.
There's so much more going on
here.
Every parent's goal,
if you have a disabled child,
should be to focus and empower
and do everything that you
possibly can for the disabled
community.
That doesn't mean talk over
(27:56):
that community or speak on
behalf of that community.
That's a whole other thing.
But I see so many parents that
are so hyper focused on the
parenting community and
building up their own support
and this and that,
that they are completely
negating the community that
their child is part of.
And I think that that's really
(28:17):
the whole point of this
episode specifically is to
kind of learn ways as a mom or
a dad or a sibling,
that you can do it the right
way.
That really does strengthen
the disability community and
raise awareness in the proper
way.
of like making actual change.
(28:40):
Whether it's like bills or you
know,
accessibility or anything like
that,
that takes taking a step back
and saying,
it's not about me,
it's not about other parents,
it's not about that community.
It's about my kids' community.
And I should reel it back in a
little bit and figure out ways
that I can do this.
Because there are a lot of
parents out there that are
(29:01):
harming the disability
community by the content that
they're posting.
And I'll die on that hill.
You've already got people that
think they have a full right
to just walk up to a disabled
person in public and ask any
medical question they want or
you know,
how,
how,
how do you have sex?
It's like why are we gonna
fuck We can do a whole episode
(29:22):
on awful,
awful things.
I have said to people that
have confronted me in public
and The awful things you've
heard,
I'm sure like just no filter
for the questions that have
been asked for you to,
you Just wanna say,
I am absolutely blown away by
the positive responses I have
gotten over the last six
(29:44):
months or the year or last
year.
I'll get vulnerable for a
second and fully admit that I
have gotten messages from
people about how I have
changed the way they raise
their child and literally put
the phone down at bald for an
hour.
I am extremely sensitive to
(30:04):
the things I do and when I
come into somebody's comments
or when I come in and say
these things,
I am not just saying it to,
you know,
be hurtful or to be a dick.
I'm saying it because a lot of
the times it is the only way
to break through the wall and
(30:25):
put things in perspective.
If you had told me in the
eighth grade,
the eighth grade,
the ninth grade,
the 10th grade that I,
you know,
I was a disabled kid,
there would've been a fight on
your hands.
Cause I wasn't one of those
kids.
Mm.
No fucking way was,
I was one of those kids that I
was seeing that I was being
shown.
That's not fucking me.
(30:46):
I will never be like that.
And now it's a matter of I am
that I've accepted that I was
one of those people and I want
to give that same attitude to
those kids now only with the
positive thing of,
okay,
yeah,
I am disabled.
(31:06):
Fuck you.
What about it?
The reason I swear so much is
cuz in my work is,
you know,
people will say,
oh well you know,
you maybe if you spoke a
little soft,
no fuck you.
If you think the worst thing
in the world is for a disabled
child to tell someone that it
costs them in public and ask
them,
oh,
what's your disability?
(31:28):
What's that?
Uh,
what,
what's why wrong with you?
Why you,
why don't you just walk?
Why can't you walk a little
boy?
If you think the worst thing
in the world is for that kid
to look that per adult in the
eye and say go fuck yourself,
then you gotta reevaluate the
world that they're living in
because you don't understand
it now.
And it's,
it's very interesting that you
are saying this for me because
(31:49):
I've spoken with a lot of,
uh,
disabled adults and they have
told me like a lot of their
childhood,
they were told like,
be the quiet disabled kid.
Like,
don't make yourself too big
and don't take up too much
space.
And,
and I don't think that that
has to be the case for the
younger generation at all.
(32:09):
I don't think it should be the
case.
And I also think that with
social media in particular,
when you're opening up these
doors of allowing people to
ask questions about your child
and their medical diagnosis
and this and that and,
and putting it out for
everyone to see you are cre
still creating that space.
(32:30):
Like you're making this open
book for your child when they
might not want that and they
should have the right to not
be an open book and to say
like,
no thanks,
don't ask like move along.
I am not like,
I'm not here for your
entertainment.
I'm not here for your
curiosity.
And that's why I think it's
very,
uh,
(32:51):
damaging sometimes to I think
it's okay to to share your
life,
right?
Like,
Cyrus is disabled,
it's just part of our life.
I'm not going to not post a
picture of my kid in a
wheelchair because that's just
his existence.
There's a difference between
hiding your kid and like
blasting everything about them
to the point where like your
kid's practically naked and
(33:11):
you're talking about like,
you're showing videos of them
seizing and stuff like,
like you're creating this open
dialogue for strangers to,
to feel that it's still
acceptable to ask questions
and then the kids should just
deal with it.
The best way for your child to
advocate,
the best way for you to
advocate for your child and
(33:32):
your child to advocate for
themselves is to live their
goddamn life and refuse to eat
shit.
Because the first thing you
learn as a disabled kid is
that the world,
other kids,
teachers,
other parents,
just anyone out in the world
thinks they have the right to
make you eat shit.
(33:54):
I absolutely refuse to eat
shit.
The last time someone made me
eat shit was my eighth grade
graduation and that was the
last time I kept my mouth shut
cuz I could see my mother in
the crowd just being like,
don't,
don't do don't don't,
don't do it.
Don't do it.
I decided later that night,
that was the last fucking time
(34:14):
anyone was gonna make me eat
shit as a disabled person.
And now it's like,
doesn't matter public,
doesn't matter how big they
are,
the worst thing you can do is
kick the shit outta me.
Guess what?
I'm already crippled.
I'm already in constant pain
and I want to instill this of,
you know,
I want Cyrus,
(34:35):
you know?
Absolutely.
And he's a spicy kid to begin
with.
you know,
absolutely refusing to eat
shit.
Give the kid a fuck you button
to press if need be.
Yes,
Yes.
Can we do that?
He does have an entire like,
swearing page on his prc If
(34:55):
you think the worst thing in
your in the world is your
disabled child telling someone
to fuck off,
you need to reevaluate what
they're gonna deal with in
life.
Yeah.
Yeah.
Because that's like,
compared to what they receive
is,
is so minor.
Like they receive so much like
discrimination and hate.
Exactly.
Like,
oh I I'm,
I'm sorry you're,
(35:15):
you're telling me this
disabled kid doesn't have a
right to live and you know,
should be drowned in the pool
while the family is on
vacation and you expect that
little girl shouldn't look at
you and tell you to go fuck
yourself.
I can't wait until she hits
that age where she can be a
fucking bitch.
(35:36):
Nice Because there's already
such a personality and such an
ownership anyway.
I cannot wait for that moment
when she knows how to be a
fucking bitch when the need
comes.
What are your thoughts on how
caregivers or parents um,
(35:57):
can be active,
um,
and you know,
like participate in advocacy
and all that while still being
able to maintain privacy.
Like in your world,
in your opinion,
what does that look like?
Advocacy is important.
Raising awareness is
important.
Getting the things that our
kids need in efficient times.
Having approvals met all that.
(36:18):
It's so important cuz it
affects the life and the
quality of life of these kids.
So how would parents be able
to do all of this while still
maintaining privacy?
I'm gonna try and,
you know,
be uncharacteristically su
succinct.
A once again your parent not a
caregiver,
you share your life,
you don't share your story or
your journey or you know,
(36:40):
any of the other buzzwords
that various other medical
mama bearers like to use.
I have a good example of an
account that I really wanna
like,
but I hate just because of the
name and I'm not gonna say the
name,
we'll say it's life with Alice
just as an example.
And they have the,
the,
the parents have four
(37:00):
children.
The second youngest is,
I believe the second youngest
is disabled.
The other two kids and the
baby are abled at least as far
as I know.
But the Instagram account and
it's just,
you know,
their,
their family life,
they're doing their thing.
But the Instagram account is
life with Alice.
(37:22):
It's not just about our
family,
it's about Alice is the star.
Kind of like that show with
the teenager that had down
syndrome back in the eighties
or nineties.
Uh,
I can't remember the name of
it,
but like,
it's like,
no,
no,
they're the star of our little
show.
Mm-hmm.
Well why are,
why why are they the star of
your little show?
(37:42):
Is it just because they're
disabled?
And to me that's the wrong way
to do it.
As far as raising awareness or
advocating online,
you need to look at what value
is that really bringing to
take it offline and take it
into real life.
You're filling out insurance
forms for you know,
whatever and,
and you know,
you're having difficulty
(38:04):
getting a new piece of
equipment for your disabled
child.
What good does it really do to
explain that to the cashier at
the Walmart Who will never
have to deal with that Maybe
Yeah.
or at least isn't right now.
Well,
uh,
yeah,
Who will ne a never have to
deal with that,
(38:25):
but b doesn't work in the
insurance industry,
doesn't actually know your
child or your family.
Like you go to the Walmart in
a different state cause you
happen to on vacation and just
start explaining all this
stuff for any reason
whatsoever.
What good does that actually
do?
How does that actually help
your child?
(38:45):
So how does,
how do 10,000
people plus whatever hashtags
you're using,
how does them knowing
that your disabled child
doesn't poop like a normal,
like a abled child,
how does that help your child?
(39:07):
What does that bring?
You know,
okay,
your disabled child is in the
hospital for something,
that's fine.
I'm not saying that you
shouldn't post them in the
hospital unless they're like
sick as fuck or an agony or
something.
If they're down,
it's,
you know,
and once again it's a family
account.
Okay fine,
that's something you're going
through.
But if you're posting that and
(39:29):
then explaining everything
every doctor said and
everything,
every nurse said,
I get that you think you're
raising awareness and you are,
but what does that do?
Yeah.
What benefit does it actually
have?
Why do you think the world
gives a fuck about your
journey?
Why do you think that it's
(39:49):
even gonna make change to,
to divulge That None of the
followers are gonna be like,
I should write to insurance
companies now and tell them
that their policies are wrong.
Like nobody's gonna do that
Like it's not gonna create
change.
Sorry.
Exactly.
Like there are other ways to
create change.
Um,
the recess project for one
thing,
(40:09):
it,
there,
there are other ways to do
this without just,
you know,
having your child's organs
splayed open on Instagram or
anything like that.
This is the big argument that
I use for not answering
questions in public.
You go out with your kid,
your disabled kid in public,
someone walks up to you and
says hi,
what the fuck's wrong with
that kid?
And you wanting to be the
(40:31):
educator,
you go and you tell them
everything.
Oh it's in my case it's
arthrosis,
it's a congenital birth issue.
Da da da da da da.
You give them the whole
rundown.
Do you honestly believe that
person goes home that night
and while they're sitting with
(40:52):
the family at dinner,
that person goes,
Hey,
hey kids honey,
you know,
I learned something today.
Did you know there's this
thing called arthro graph
hosts.
Do you think they even
remember it by the time they
get to their fucking car after
walking through the parking
lot?
Absolutely not your disabled
(41:14):
children are not Pokemon to be
collected.
So you can read through the
little polka dex by anyone who
wants to take a picture.
They are real live human
beings just trying to live
their lives in a world that
ultimately will treat them
like a piece of shit every
(41:34):
chance they get.
And we're done with it.
Yeah.
We've had enough I try to
think about my social media
accounts,
especially now that I feel I'm
on this journey of education
and enlightenment is more what
would I have would've posted
prior to Leno's birth.
That's how I try to put my
(41:55):
mindset like,
well what would my social
media look like prior to Leno
being disabled?
Right.
And that's how kind of I try
to filter what I put on the
internet because why was I
really changing it and making
it all about Leno to begin
with,
I guess is really the thing.
But sometimes I just simply
(42:15):
think about what would I post
prior to disability?
What would I post about my
children prior to that?
You know?
Uh,
I don't know why that journey
sometimes you kind of get you
just like,
I gotta post about my disabled
child overshare,
overshare,
overshare.
It's wild that it's such a
common occurrence.
I don't really understand it,
(42:36):
but it is very common for that
to happen.
I don't know how to change
that And it consistently
happens.
That's the thing I think like
I overshared at the beginning
and I was trying to like build
a community and like you can't
relate to other people in your
lives that aren't dealing with
a disabled kid.
So I was trying to relate to
other people and like put out
(42:57):
the feelers and stuff and so
there's just,
I I think that's what Courtney
is kind of saying is that like
that progression has to happen
where it's like,
yeah,
okay we can't fault anyone for
oversharing at the beginning
but then phase it out Yeah you
gotta,
you gotta grow Though.
You gotta grow.
You Eventually have to move on
from that.
Yeah.
(43:17):
And I'm seeing people who are
like consistently doing it
after like 13 years who are
not,
who have other kids and are
not posting pictures of their
other kids in diapers or in
underwear or anything like
that.
But like they have a 13 or 14
year old that they're doing
that with and it's like,
where why are you treating
your disabled kids so
differently?
ex.
Exactly.
(43:37):
And like I've,
I think I've posted a couple
times on like other people's
like,
hi,
I'm just wondering um,
when was the last time you
made a three and a half minute
video about how one of your
abled kids takes a shit ex
Exactly.
Exactly.
Does the world really need to
know this?
Cuz I promise you they don't.
Mm-hmm Yeah.
And once again,
(43:58):
you know,
yeah we can,
oh we can absolutely shame
people for oversharing at the
start,
but we can also educate and
then forgive.
Yes.
Mm.
And then if you know,
they don't listen,
oh my God,
how dare you say that I can't
do that with my child.
Things get a little more blunt
and it starts like,
no,
this is the damage you're
actually doing.
(44:19):
Because the other thing is I'm
not even so much against
sharing the journey,
but it's not your journey to
share.
Right?
No it's not.
It's absolutely not.
You Don't own it.
Mm-hmm.
you know,
and worst of all,
even if you think you own it,
you have no right to give it
away for free.
Cuz I've said this on my,
on my post a couple times,
that your kid's journey,
(44:39):
your kid's story may be the
only damn thing in the world
they have to monetize.
Yeah.
Mm-hmm.
it's a valid point too In a
world that only cares about
how much money you make mm-hmm
and you know what financial
value you bring so you can pay
your own damn taxes and pay
for your own damn
accessibility.
Mm-hmm I'm dealing with this
now cuz I'm working with
(45:00):
something called the Recess
Project,
which you know,
we're trying to put accessible
playgrounds in place,
you know,
one piece of equipment at a
time in a world where
everybody wants to find an
excuse to treat your disabled
child like shit,
why are you not getting behind
the people that are already
fighting to make sure your
disabled child is not treated
like shit.
(45:20):
100%.
Because I'm telling you right
now we're coming,
we're we're coming to a point
where this,
this shit is only gonna start
to get worse for a while if
certain people get in like
larger power places,
both in the States and Canada.
And if you still can't say the
words,
like if you legitimately
cannot say the word disabled,
then you're not helping,
(45:42):
you're part of the problem and
we will treat you like you're
part of the problem.
If you're not going to get,
you know,
behind disabled people,
then you're part of the
problem.
And when if we have to roll
over you,
we will.
We're Done.
And that's the thing too is
that it's it's the disabled
adults,
the ones that are leading the
community that parents really
need to get behind.
Not the strangers commenting
(46:04):
thoughts and prayers cuz
that's not gonna change
anything.
No.
Yeah,
exactly.
We definitely want to have you
back on Wes.
I think there's just so much
we can talk about and I think
there's so much you,
you bring to the forefront in
regards to disability.
But before we end off today,
is there anything else you
wanted to add before we kind
of close up?
I'll just do some quick plugs.
(46:25):
My merch store is currently
offline.
I am rebuilding but it's gonna
take me some time.
Follow me on Instagram west of
Disabled Land and follow the
recess project and please have
me back cuz you both know I
can talk forever.
No,
we will definitely be having
you back.
Might be fun to put a fuck
count this.
I know,
Right on this one.
We'll do like a,
(46:45):
a drinking game for everybody
who's listening.
Yeah.
Right.
Oh God.
People will,
everyone will die.
Die people will Die.
I just wanna thank our
listeners who are tuning into
Bitching and Bolusing.
I wanna thank Wes for coming
on the show.
Thank you so much Wes.
It was much fun.
So much great information.
I think you have been such a
vital,
um,
advocate,
at least for me and my journey
(47:06):
and I know the same for
Courtney and like Wes said,
everyone follow the recess
project,
um,
follow Wes of Disabled Land,
um,
and then follow Bitching and
Bolusing on Instagram.
And thanks everyone for
listening.
Thank You.
And don't be a dick to
disabled kids online.
Yes,
don't do that.
Yes,
All right everyone,
(47:27):
thank you so much.
Thanks for listening to the
Bitching and Bolusing podcast.
Be sure to like and subscribe
for future episodes.
Previous episodes can be heard
on Podbean,
Spotify,
apple podcast and iHeartRadio.
If you like what we said,
please be sure to give us a
share.
You can follow us on Instagram
at bitching and bolusing and
you can visit us at
(47:48):
www.bitchingandbulling.com.
You are listening to the
Bitching and Bolusing podcast
with Courtney and Brittney.
Hi guys.
Thanks for listening to the
Bitching and Bolusing podcast.
I'm Brittney,
I'm Courtney.
Today we have a special guest
on the show,
Wes,
some of you may know him from
his social media account,
Wes of Disabled Land.
(00:22):
Wes is an outspoken disability
advocate,
especially for disabled
children and youth.
He's passionate about his
advocacy work and firmly
believes in equity for
disabled children.
Wes is the founder and creator
of Disabled Land and he's a
clothing designer focusing on
disability rights.
He's also a talented artist.
Wes is a disabled actor and
believes that representation
is extremely important.
(00:44):
Recently Wes took on the role
as moderator for a well-known
disability account,
which he wishes to keep
anonymous.
Unfortunately,
he's had to moderate some vile
and unbelievable comments and
interactions,
which further instills his
belief that parents of
disabled children should
respect the privacy and
autonomy of their children on
social media.
Thanks for coming on the show,
(01:05):
Wes.
We're so excited to have you
here.
Hi,
I am excited to be here.
I am so excited to hear what
you have to say today.
Wes you are one of the
accounts that I absolutely
love that I found,
which I found through Britney.
By the way,
if it wasn't for Britney,
um,
I I really wasn't scouring
social media for accounts that
(01:26):
were like yours.
Uh,
which is kind of embarrassing
a little bit.
But once I did discover your
account,
it's,
it's by far one of my favorite
accounts on Instagram right
now.
I,
I'm not entirely sure how many
accounts there are that are
exactly like my account.
There are many that are
similar but have much larger
followings,
(01:46):
both cuz they have worked very
hard and both because I tend
to not care if people follow
me or not.
I actually wanted to touch on
your social media account
specifically Instagram and how
you've mentioned before that
you're,
you feel like you are not even
sure how to describe what it
is you do on social media.
(02:08):
And maybe for the listeners
that don't know you,
can you give a little
background of how your account
has transformed?
You know,
I've been thinking about this
the last couple days since I
knew I was gonna do this.
I can't tell you how this
started.
I know I started before the
world went crazy and shut down
for the pandemic.
As a disabled person,
(02:28):
I was always looking for a way
to make money.
I was always playing with like
t-shirt merch and like print
to order stuff and things like
that.
But I genuinely can't tell you
how this started.
I genuinely can't tell you.
When I started doing Disabled
Land as its own account,
I cannot for the life of me
remember how I started doing
this.
To me,
you are the image of advocacy
(02:49):
for privacy and autonomy and,
and other things related to
disabled children.
But for me that that's what
you stand for And it,
it's,
it's such an interesting
dynamic that you unofficially
kind of fell into that role.
This is gonna sound awful,
but keep in mind I grew up in
the eighties.
I was born in 76.
I grew up in the eighties.
I grew up in the nineties.
(03:10):
The only disability
representation of any kind was
awful.
Mm-hmm the only disability
representation in the media
was awful.
I walk with a heavy limp.
My cripple credentials are,
I was born with
Arthrogryposis.
The only disability icon I had
when I was a little kid was
Terry Fox.
When you walk with a limp and
(03:31):
the only other person in the
media that like re that the
other able bodied people are
seeing also walks with a limp,
you automatically get called
that motherfucker.
It doesn't matter.
Little girl in a wheelchair.
For some reason idiots think
it's real funny to refer to
her as Hector Guro from uh,
breaking Bad.
Don't Know Why.
(03:51):
I don't know how I started.
I didn't particularly like
disability representation.
The point where I started
thinking I need to do more in
this community came for my
birthday.
My best friend and I went to
Niagara Falls.
It was kind of a ritual.
We had stayed at the uh,
double Tree Hotel.
Can't recommend it enough.
Niagara Falls,
Ontario.
I don't know what the American
one is like.
(04:12):
I ran into this little kid and
his cousin there.
He was bouncing around the
pool and he had the heart
surgery.
Scar got talking to him and
his cousin I think was his
cousin or his sister and he
was a sick kid's kid.
Well,
I was a sick kid's kid.
Sick kids is the major
hospital in Toronto,
Ontario one of the best
(04:32):
hospitals you can go to if
you're a kid with a disability
or illness Best in the world.
Quite frankly,
he was actually part of the
Sick Kids versus marketing
campaign that they do to
fundraise for their new
hospital.
Now,
if you don't know about the
Sick Kids Marketing campaign,
the Sick Kids versus campaign
post a link to it.
It is the single best
(04:54):
representation for disabled
sick children that there will
ever be.
They will take representation
of children and and for their
parents,
quite frankly.
They will take representation
of children that are literally
dying of cancer and turn them
into absolute badass.
Not downplaying the situation,
not downplaying how sick they
are,
but there is zero pity there
(05:16):
is zero.
Oh look at this poor thing.
It isn't like,
oh we need to build this
hospital for these poor sick
children.
It's why the fuck haven't we
built this hospital already
for these mm-hmm incredible
kids that need this and maybe
this doesn't have to be all
this weak ass victimization
(05:38):
crap that I'm seeing.
Then I just kind of started
talking and quite frankly
motherfucking people online,
it just kind of ruled from
that.
So I know that there's a
growing presence on social
media of parents and,
and accounts for their
(05:59):
disabled children and I know
that there is a way that it
can be done well and then
there are many accounts out
there that are not doing it
well at all.
And I'm interested to get your
opinion on what you're seeing.
You're also moderating so
you're having to deal with um,
comments and messages from
people that the,
(06:19):
the account you're moderating,
they don't even really post
like the medical side of
things,
but there is a responsibility
on parents to protect and
maintain privacy for their
children.
And I think that there is some
level of that not happening
within the social media world.
And I just kind of wanna get
your side of it because you
(06:40):
grew up in the eighties so
there wasn't social media as a
disabled adult and a disabled
man seeing this and seeing
parents not respecting the
privacy.
Do you have a feeling towards
that With that?
Uh,
first of all,
I'm gonna come in real hot on
something because I did listen
to your very first episode and
I kind of wish that I was in
(07:01):
the second recording because I
want to come in hot on
something cuz the two of you
were very wonderful and
diplomatic as far as the terms
special needs.
You don't want to tell anyone
that it's wrong and I just
wanna come in real hot and say
West of disabled land is
saying it is absolutely wrong.
The term special needs belongs
in the dumpster.
(07:22):
It is a garbage term.
If you are the parent of a
disabled child and you are too
goddamn mortified,
embarrassed or ashamed that
you cannot even speak the word
disabled,
you have a big problem.
You are using that special
needs term.
You were a telling your dis
you think there's something
wrong with your child being
disabled.
You are telling your disabled
(07:43):
child.
You think showing them that
there is something wrong with
them being disabled and you
are showing the world that
there is something wrong with
the term disabled.
On top of that special needs
don't actually exist.
What you're calling special
needs are your kids human
rights to all these things.
Both of you have had to fight
(08:04):
for it for your kids.
When you call that and other
disabled people start dog
piling on you and I come on
and start politely
motherfucking you.
That is because not only are
you fucking over your child,
you are fucking over every
disabled child.
You are making it harder for
you to get their shit,
the shit they need.
You are making it harder for
(08:24):
them to eventually get those
things they need because this
isn't just either they're
like,
oh,
I can call my child whatever
you want.
You might think that,
but you're not just messing
with your kids' future,
you're messing with all our
futures.
This is not a game.
This is not a silly little
word play.
These are our human rights
(08:45):
that you are fucking with on a
daily basis because you can't
suck it up.
Be an adult and say the damn
word.
What you guys are hearing
right now from us Is exactly
why for me,
your account and your voice on
Instagram is so important
because when we,
me and Brittney,
even in that other episode
where we kind of bring up
special needs,
(09:06):
it's more of us trying to be
like respectful of the
caregiver parent journey.
Cuz I know I was reactive to
the people saying that I can't
use the word special needs And
full disclosure,
I like when Cyrus was first
born.
I 100% used that term until I
was like,
oh this and it never felt
(09:26):
right using that term,
but I it didn't,
Yeah.
I mean like I had like hashtag
special needs and now I look
back and I'm like,
oh God,
I was that person.
But we feel the same as you
about the word.
We Do not like it.
Oh no,
I know,
I know,
I know you do.
I fucking hate that word.
(09:46):
It,
I was listening and I'm like,
yeah,
they're being very diplomatic.
They're waiting for me to come
in.
Both of you do your accounts
very well as far as kids with
disabilities being online.
It is just,
here's my kid,
here's my family.
We talk about these things a
little bit,
but it's not the whole damn
thing.
My deal is with a lot of these
accounts is what are you
(10:08):
trying to accomplish?
Large portions of the world do
not give a fuck about your
disabled child.
They don't care.
Yeah.
They do not give a shit.
They see that once again,
why we don't say it's a
special need.
They see them as a tax burden.
They see them as in the way,
why should my tax dollars pay
for this?
Why,
why should anything I might
(10:29):
have go to them.
They're never gonna be able to
work,
they're never gonna be able to
do anything.
They don't produce anything.
They're seen as baggage.
Yeah.
They're seen as baggage.
They're seen as garbage.
This Is an issue that I have
too with like people who
really focus on the tragic
side of it is that you are
(10:50):
going to have people come to
your account,
especially if you have a,
a larger following and they're
gonna see this tragedy that's
going on,
right.
Like the the medical stuff.
The hospital stays this and
that.
At some point there are going
to be people where God forbid
if your child dies,
they're gonna think like,
oh,
at least that person's not
(11:11):
burdened anymore.
And I I could never deal with
that.
I could never deal with anyone
thinking that cyrus's like
death lightens my load.
It's creating this entire
facade when you're focusing on
the negative and the trauma
and all of this with people
who don't deal with
disability.
It's creating this entire
(11:32):
illusion that it's a burden.
Yeah.
And there's this genuine idea
that,
oh,
if I just plaster my disabled
child everywhere,
I'm gonna change the world.
Mm.
Yes.
Yeah.
I am gonna make these people
give a fuck about my disabled
child.
Yes.
But it's not them.
It's their sick kid.
That's the difference.
It's not the parent changing
(11:53):
the world,
it's the picture.
Like it's their kid.
They're putting it on the
backs of their kids who are
bagged in ambulances who are
getting poked and prodded in
hospitals.
So that's my issue is that
it's not the parents changing
the world.
If you're posting a picture of
your kid really sick in a
hospital,
that's your,
you're you're putting that on
your child.
You're also not changing the
world at all by doing that.
(12:13):
You're,
you're just exactly,
honestly compounding the
problem and creating
aspirational porn And then
they get a taste for it.
They get the likes and the
followers.
Mm-hmm.
it becomes more and more and
more of the sharing.
It's Like a reward.
Yeah,
Exactly.
It it's,
you just published your baby
half dead on TikTok.
(12:33):
What are we doing?
And I wanna put this in
perspective for all the
parents.
This is the perfect chance to
do this.
I want you to imagine not even
getting old tomorrow.
Something goes wrong,
you have a massive stroke,
you've got a blood clot in
your brain that no one knew
about that's been there for
years and one day it just pops
(12:54):
and all of a sudden overnight
half your body is paralyzed.
You lose your ability to
communicate,
you lose the ability to take a
shit on your own.
You were basically knocked
back to toddlerhood.
How much of that do you want
on Instagram?
Mm-hmm.
do you want yourself laying on
(13:15):
the couch half naked in a
diaper?
It's such a valid point.
Drooling away.
Do you wanna be a special
needs adult?
Do you want your child no
longer referring to the taking
care of you no longer
referring to themselves as a
child,
but as an autism child or a
stroke survivor child,
(13:37):
you are not raising a rare
disease.
You are raising a child.
You are not a,
and this and Courtney,
I'm sorry,
you are not a caregiver.
You are a parent.
I fully admit you have a whole
shit ton more responsibilities
than the average parent.
But you are a parent.
You are not a medical
(13:57):
professional.
And So this is where I have a
hard time with the caregiving
thing because there are laws
in place,
there are bills in place.
There are certain states in
the US cuz we are in the US
uh,
west is in Canada.
But there are certain states
in the US that do offer
caregiver insurance for
parents that cannot work
(14:18):
because they have to stay home
with their kids.
I mean there are a lot of
situations where daycares
won't take disabled kids.
So I think that there's like
this dichotomy of that term is
important in certain
situations.
But I do have a big issue with
parents referring to
themselves as that in just
like everyday life.
(14:41):
Fill the paperwork however you
need to.
Mm-hmm.
I sound like I have no
sympathy for the struggle of
any parent dealing with this
stuff.
I have nothing but sympathy.
But there is also a difference
between,
for me of pushing for
advocating for a disabled
child and advocating for
parents.
(15:01):
I say it straight out.
Yeah.
Your disabled child,
you,
your,
your,
your child's disability is not
your identity.
Mm-hmm.
Yeah.
When you go out without them,
no one is staring at you.
Yeah.
And listen,
these are hard pills to
swallow.
This is,
this is not easy for being on
this side of things.
It's not easy to hear.
It's really not.
I was very combative myself.
(15:22):
You know,
it's like hi,
it's me that,
that was me that you're
talking about.
You know,
and me still to some certain
extent,
which is why I just got called
out about the caregiver But
realistically right Wes,
you're not wrong.
And realistically my son,
he doesn't see me as anything
other than mom.
Right.
Right.
Like yes.
That's the damn truth.
So me sitting there and giving
(15:42):
myself all these additional
labels,
who am I doing that for?
Who,
who is that for?
You know,
sometimes you need to take
that step back and think about
why am I calling myself that
And you know,
I'm just starting on the
caregiver journey.
I'm almost there Wes,
but I'm not there yet.
It's,
it's why I come in so bluntly
(16:04):
and like brutally cuz it's
like people,
it's like the only way people
get it is that shock to the
system.
Mm-hmm Yeah.
The moderation gig that you
have is uh,
we'll we'll keep everything
anonymous,
but it's for an account and
um,
the child on the account
consents to everything and
it's very cognitively aware.
(16:26):
Um,
all that.
I don't even wanna like say
the gender cause I don't want
people to So I'm trying to
think before I speak.
It is an account for a
disabled child actor.
Mm-hmm a disabled child,
YouTuber.
Um,
very much the thing that they
want to be doing.
I've talked with them,
but Wes you say these accounts
are horrible and you're
working for one.
(16:47):
And that's actually how it
started.
I was talking with the mom and
it was like,
I don't necessarily like that
this child has almost 50 K
followers.
I don't particularly like that
we've reached almost or just
over 2 million people in the
last month.
However,
if you're going to do that you
(17:09):
need to moderate Mm mm-hmm it
was a six month,
like a six month discussion
about um,
me becoming the moderator and
possibly working and whether
or not I wanted to do that.
Just cuz the issues I have
with this whole concept of
going through and like saying,
okay,
well you've got this comment,
this comment and this comment
from like six weeks ago that
you've never seen because you
just,
you don't have time.
(17:29):
You're a full-time mom.
You have you're disabled child
plus three other kids,
you're running your child's
career and it is a career for
them.
They are a paid actor.
The kid is making money.
Most of the money goes to the
kid.
You guys have small enough
accounts at this point because
you haven't tried to grow,
get huge and big.
(17:50):
Hopefully the podcast will,
but your private accounts
don't need to.
Definitely not I have no
interest.
No,
I really rather it don't I'm
currently mentally prepping
myself right now cuz I know
the next video that goes on
the account,
we figure it's gonna be
another one that goes viral
because it,
it's to do with the airlines
and airline wheelchair damage.
And keep in mind I just
(18:11):
moderate the Instagram at this
point.
We're talking about me also
doing their TikTok,
which I'm dreading cuz even
the mom says like the TikTok,
I've had to turn comments off
on things cuz it is just a
nightmare.
TikTok is brutal.
It really is.
I,
I have said and the parent
knows this,
that yeah the parent may be
paying me,
the parent may have hired me.
(18:32):
I work for the kid if the mom
and I disagree on something on
whether or not a kind of post
should go away or usually I
will explain why I think the
kind of post should go away.
But it's kind of an
understanding of I work for
the kid.
If I think something needs to
go away or someone needs to be
(18:52):
blocked,
they're going away.
They're going to be blocked.
If that is an issue,
we can talk about it and you
know,
you can fire me.
But you know,
once again,
it's not just about your
child,
it's about all the other kids
reading this.
I don't want some other kid
reading this and thinking that
it's okay to,
you know,
defend disabled kids and then
(19:13):
talk about trans kids.
Like they're trash.
This is kind of an issue that
I have too is turning all of
that hatred into content,
which I know some parents will
do.
And listen,
I absolutely,
I love like calling the trolls
out publicly.
I think they need to be
blasted.
Like I'm all about that whole
(19:33):
like get them fired life type
of thing.
But at some point either these
children are gonna be older
and will read all of this or
other kids will,
or like even parents or
siblings might see all this
hatred.
And I have a hard time with
the turning hatred into
content.
Well and I think a lot of
(19:54):
people use the hatred also to
push their own agenda even
though they front it like
they're doing something good
for the disabled community,
but it's actually not,
it's more to get more
followers.
It's more to get more exposure
for themselves.
And I think there,
there might be a level they
don't recognize that but it,
it definitely happens.
Well The,
(20:14):
the account I work for,
she has said that like I do,
I I I call the trolls out less
and less now because she has
literally had trolls message
her later and say Hey thanks
for making me a video.
Ah yeah look at that.
Which is why now like it
pretty much,
you know,
the name has always fuzzed out
and things like that because
that person has already been
blocked.
(20:34):
That person has already been
removed from the conversation.
The kid I work for is aware
there are trash people out
there.
Mm-hmm because they'll get the
trash people in real life.
Right?
Yes.
It's not just an online issue.
All the crap your kid gets
online,
they're still just gonna get a
different version of it every
(20:55):
time they leave the house.
Mm-hmm they're aware of it,
they know it's there and now
you can tell 'em it's like
okay this shit is being said
but you've got someone that is
making it go away.
Yeah.
Mm-hmm not so much for your
benefit but for the benefit of
your fans.
For the benefit of the people
going in reading it and for
the benefit of other disabled
(21:16):
kids that might not be
necessarily aware of it yet.
Yeah.
And once again,
why are you calling them
special needs as if that is
somehow going to protect them.
It's not simply changing the
language to something you
think is softer doesn't do
anything.
No,
you just made me think of
something I wanted you to
touch on.
Is the echo chamber of these
(21:39):
support groups or just in
general on social media
especially I feel like we are
talking more about moms than
dads because moms seem to be
just more actively involved in
the social media aspect of
quote unquote raising
awareness of my disabled child
or et cetera,
et cetera.
But you talk a lot about that
(22:00):
echo chamber effect.
Do you wanna talk a little bit
about it now to our listeners
Here?
Here's what happens.
And I think both of you can
probably identify from this,
from listening to the first
episode of all of a sudden
you've got this disabled baby
that dude didn't plan on
having and all you want in the
world is for someone to tell
(22:21):
you that you did nothing
wrong.
It's,
and I'm right out saying right
now I am not saying you did
anything wrong.
I am not saying any disabled,
any parent of a disabled child
did anything wrong.
It just happens.
So you go searching for that
and you they,
you fall into one of these
(22:42):
groups and because all you
want to hear is that you did
nothing wrong and that
everything is going to be
okay.
I think in terms of that it's
not just being told that
parents did nothing wrong or
mothers did nothing wrong.
I think it's also the
validation side of things.
I think parents have to feel,
especially if like parents
(23:04):
gave up a career,
they gave up traveling or or
hobbies or anything like that.
They need to feel so validated
in all of these quote unquote
sacrifices that they're having
to make.
And I don't wanna say they're
not making sacrifices,
but it's like kind of comes
with the whole job of being a
parent to some extent.
You're gonna make sacrifices
as it is.
It's a really harmful
(23:26):
narrative because parents are
very publicly vocal about how
much they have to go through
and how much they have to
sacrifice.
And I really sit back and I
wonder what does this
narrative do to the disabled
community that's adults and
(23:47):
now they're having to sit back
and think like,
holy shit,
did my parents feel that way
about me?
And I think there's such like
this narrow mindset of well
this only affects me and
parents that have kids that
are like the same age of my
kids.
Or like this doesn't affect
the adults that are cognitive
and can understand all of
(24:07):
this.
And would you agree with that
and think that this whole
narrative and this whole echo
chamber and all this is like
really,
really harmful to not just the
disabled community but also
like to the mental health of
adults.
Absolutely.
The one thing,
um,
every parent of this disabled
kid needs to learn real fast
(24:28):
is that you will never
understand what it is to be
your disabled child.
Mm-hmm.
no matter what,
no matter how hard you try,
no matter how hard you think
you can,
you're never going to
understand it.
Just like they are never going
to truly understand.
Mm-hmm your birth trauma,
(24:50):
your sacrifice,
things like that.
And I'm not saying that there
isn't a sacrifice there
obviously is,
and I'm not saying it's not
harder to raise a disabled
kid.
It obviously is and there's
things you have to do that no
other parent,
no other parent of an able
child has to do that you don't
have to do with your able
kids.
Mm-hmm and that's its whole
other thing.
(25:11):
But there becomes this merger
of the think the identity.
Oh well yeah,
I'm a disabled mom,
I'm an autism mom like Cyrus,
Cyrus exists in the world.
Mm-hmm.
And Courtney,
I apologize,
I'm talking more about
Brittney just because for some
reason I am just less aware of
your account.
I dunno why.
I dunno.
(25:32):
I mean I know I've been there.
I know I've seen it.
I know it's not problematic.
You Would've had problems with
my account though.
I'm just gonna put that out
there.
There were plenty of Things
and I think you've probably
had problems with my account
in the past too.
I mean this is all a
progression through,
I don't wanna say the journey
but like a progression through
the journey.
Right.
Like,
(25:52):
I mean I'm sure I would've
like back before we met if I
went,
you know,
but one of my sick kids,
kids,
not the one that got me
started in this,
but the mom,
she overshare a lot and I
cringe a lot and I just,
I can't bring myself to
unfollow cause I've been
following the kids literally
since birth and the surgery
and everything.
It's just one of those things
(26:14):
of I just,
I bite my lip a lot of times
then every once in a while I
can't.
And she posted this pick of
him in the living room with
all his scars and that,
which no problem,
I don't care about showing,
showing the scars,
whatever.
But the kid happened to be
naked at the time and she just
put a star over his wiener.
Oh no,
(26:34):
What are we doing here?
And she was like,
oh,
oh shit,
you're probably right.
And that pick went down.
I'm like,
this crap gets screen capped.
Yeah.
And stolen all the time.
The internet is forever,
Forever A,
the internet is here forever.
(26:54):
B,
what the hell are you doing?
Being called out and being
confronted with these sorts of
topics as a mother and as a
parent is can be really
difficult to accept and to
kind of really,
truly listen.
And I'm sure we're gonna push
a lot of people away.
I'm hoping we push them away
to think and then they come
back.
That's my goal here.
(27:15):
you know,
it,
it's a really tricky thing.
You know,
we're talking about things
that are hard.
Mm-hmm to hear it is really
hard to hear it.
But you know,
when you do sit and you take
this information and you sit
with it for a little bit,
the hope is that you get to
that point where you see that
there's,
there's so much truth and
logic to what we are saying
(27:36):
and this,
these are real issues.
This is not just about your
social media account.
There's so much more going on
here.
Every parent's goal,
if you have a disabled child,
should be to focus and empower
and do everything that you
possibly can for the disabled
community.
That doesn't mean talk over
(27:56):
that community or speak on
behalf of that community.
That's a whole other thing.
But I see so many parents that
are so hyper focused on the
parenting community and
building up their own support
and this and that,
that they are completely
negating the community that
their child is part of.
And I think that that's really
(28:17):
the whole point of this
episode specifically is to
kind of learn ways as a mom or
a dad or a sibling,
that you can do it the right
way.
That really does strengthen
the disability community and
raise awareness in the proper
way.
of like making actual change.
(28:40):
Whether it's like bills or you
know,
accessibility or anything like
that,
that takes taking a step back
and saying,
it's not about me,
it's not about other parents,
it's not about that community.
It's about my kids' community.
And I should reel it back in a
little bit and figure out ways
that I can do this.
Because there are a lot of
parents out there that are
(29:01):
harming the disability
community by the content that
they're posting.
And I'll die on that hill.
You've already got people that
think they have a full right
to just walk up to a disabled
person in public and ask any
medical question they want or
you know,
how,
how,
how do you have sex?
It's like why are we gonna
fuck We can do a whole episode
(29:22):
on awful,
awful things.
I have said to people that
have confronted me in public
and The awful things you've
heard,
I'm sure like just no filter
for the questions that have
been asked for you to,
you Just wanna say,
I am absolutely blown away by
the positive responses I have
gotten over the last six
(29:44):
months or the year or last
year.
I'll get vulnerable for a
second and fully admit that I
have gotten messages from
people about how I have
changed the way they raise
their child and literally put
the phone down at bald for an
hour.
I am extremely sensitive to
(30:04):
the things I do and when I
come into somebody's comments
or when I come in and say
these things,
I am not just saying it to,
you know,
be hurtful or to be a dick.
I'm saying it because a lot of
the times it is the only way
to break through the wall and
(30:25):
put things in perspective.
If you had told me in the
eighth grade,
the eighth grade,
the ninth grade,
the 10th grade that I,
you know,
I was a disabled kid,
there would've been a fight on
your hands.
Cause I wasn't one of those
kids.
Mm.
No fucking way was,
I was one of those kids that I
was seeing that I was being
shown.
That's not fucking me.
(30:46):
I will never be like that.
And now it's a matter of I am
that I've accepted that I was
one of those people and I want
to give that same attitude to
those kids now only with the
positive thing of,
okay,
yeah,
I am disabled.
(31:06):
Fuck you.
What about it?
The reason I swear so much is
cuz in my work is,
you know,
people will say,
oh well you know,
you maybe if you spoke a
little soft,
no fuck you.
If you think the worst thing
in the world is for a disabled
child to tell someone that it
costs them in public and ask
them,
oh,
what's your disability?
(31:28):
What's that?
Uh,
what,
what's why wrong with you?
Why you,
why don't you just walk?
Why can't you walk a little
boy?
If you think the worst thing
in the world is for that kid
to look that per adult in the
eye and say go fuck yourself,
then you gotta reevaluate the
world that they're living in
because you don't understand
it now.
And it's,
it's very interesting that you
are saying this for me because
(31:49):
I've spoken with a lot of,
uh,
disabled adults and they have
told me like a lot of their
childhood,
they were told like,
be the quiet disabled kid.
Like,
don't make yourself too big
and don't take up too much
space.
And,
and I don't think that that
has to be the case for the
younger generation at all.
(32:09):
I don't think it should be the
case.
And I also think that with
social media in particular,
when you're opening up these
doors of allowing people to
ask questions about your child
and their medical diagnosis
and this and that and,
and putting it out for
everyone to see you are cre
still creating that space.
(32:30):
Like you're making this open
book for your child when they
might not want that and they
should have the right to not
be an open book and to say
like,
no thanks,
don't ask like move along.
I am not like,
I'm not here for your
entertainment.
I'm not here for your
curiosity.
And that's why I think it's
very,
uh,
(32:51):
damaging sometimes to I think
it's okay to to share your
life,
right?
Like,
Cyrus is disabled,
it's just part of our life.
I'm not going to not post a
picture of my kid in a
wheelchair because that's just
his existence.
There's a difference between
hiding your kid and like
blasting everything about them
to the point where like your
kid's practically naked and
(33:11):
you're talking about like,
you're showing videos of them
seizing and stuff like,
like you're creating this open
dialogue for strangers to,
to feel that it's still
acceptable to ask questions
and then the kids should just
deal with it.
The best way for your child to
advocate,
the best way for you to
advocate for your child and
(33:32):
your child to advocate for
themselves is to live their
goddamn life and refuse to eat
shit.
Because the first thing you
learn as a disabled kid is
that the world,
other kids,
teachers,
other parents,
just anyone out in the world
thinks they have the right to
make you eat shit.
(33:54):
I absolutely refuse to eat
shit.
The last time someone made me
eat shit was my eighth grade
graduation and that was the
last time I kept my mouth shut
cuz I could see my mother in
the crowd just being like,
don't,
don't do don't don't,
don't do it.
Don't do it.
I decided later that night,
that was the last fucking time
(34:14):
anyone was gonna make me eat
shit as a disabled person.
And now it's like,
doesn't matter public,
doesn't matter how big they
are,
the worst thing you can do is
kick the shit outta me.
Guess what?
I'm already crippled.
I'm already in constant pain
and I want to instill this of,
you know,
I want Cyrus,
(34:35):
you know?
Absolutely.
And he's a spicy kid to begin
with.
you know,
absolutely refusing to eat
shit.
Give the kid a fuck you button
to press if need be.
Yes,
Yes.
Can we do that?
He does have an entire like,
swearing page on his prc If
(34:55):
you think the worst thing in
your in the world is your
disabled child telling someone
to fuck off,
you need to reevaluate what
they're gonna deal with in
life.
Yeah.
Yeah.
Because that's like,
compared to what they receive
is,
is so minor.
Like they receive so much like
discrimination and hate.
Exactly.
Like,
oh I I'm,
I'm sorry you're,
(35:15):
you're telling me this
disabled kid doesn't have a
right to live and you know,
should be drowned in the pool
while the family is on
vacation and you expect that
little girl shouldn't look at
you and tell you to go fuck
yourself.
I can't wait until she hits
that age where she can be a
fucking bitch.
(35:36):
Nice Because there's already
such a personality and such an
ownership anyway.
I cannot wait for that moment
when she knows how to be a
fucking bitch when the need
comes.
What are your thoughts on how
caregivers or parents um,
(35:57):
can be active,
um,
and you know,
like participate in advocacy
and all that while still being
able to maintain privacy.
Like in your world,
in your opinion,
what does that look like?
Advocacy is important.
Raising awareness is
important.
Getting the things that our
kids need in efficient times.
Having approvals met all that.
(36:18):
It's so important cuz it
affects the life and the
quality of life of these kids.
So how would parents be able
to do all of this while still
maintaining privacy?
I'm gonna try and,
you know,
be uncharacteristically su
succinct.
A once again your parent not a
caregiver,
you share your life,
you don't share your story or
your journey or you know,
(36:40):
any of the other buzzwords
that various other medical
mama bearers like to use.
I have a good example of an
account that I really wanna
like,
but I hate just because of the
name and I'm not gonna say the
name,
we'll say it's life with Alice
just as an example.
And they have the,
the,
the parents have four
(37:00):
children.
The second youngest is,
I believe the second youngest
is disabled.
The other two kids and the
baby are abled at least as far
as I know.
But the Instagram account and
it's just,
you know,
their,
their family life,
they're doing their thing.
But the Instagram account is
life with Alice.
(37:22):
It's not just about our
family,
it's about Alice is the star.
Kind of like that show with
the teenager that had down
syndrome back in the eighties
or nineties.
Uh,
I can't remember the name of
it,
but like,
it's like,
no,
no,
they're the star of our little
show.
Mm-hmm.
Well why are,
why why are they the star of
your little show?
(37:42):
Is it just because they're
disabled?
And to me that's the wrong way
to do it.
As far as raising awareness or
advocating online,
you need to look at what value
is that really bringing to
take it offline and take it
into real life.
You're filling out insurance
forms for you know,
whatever and,
and you know,
you're having difficulty
(38:04):
getting a new piece of
equipment for your disabled
child.
What good does it really do to
explain that to the cashier at
the Walmart Who will never
have to deal with that Maybe
Yeah.
or at least isn't right now.
Well,
uh,
yeah,
Who will ne a never have to
deal with that,
(38:25):
but b doesn't work in the
insurance industry,
doesn't actually know your
child or your family.
Like you go to the Walmart in
a different state cause you
happen to on vacation and just
start explaining all this
stuff for any reason
whatsoever.
What good does that actually
do?
How does that actually help
your child?
(38:45):
So how does,
how do 10,000
people plus whatever hashtags
you're using,
how does them knowing
that your disabled child
doesn't poop like a normal,
like a abled child,
how does that help your child?
(39:07):
What does that bring?
You know,
okay,
your disabled child is in the
hospital for something,
that's fine.
I'm not saying that you
shouldn't post them in the
hospital unless they're like
sick as fuck or an agony or
something.
If they're down,
it's,
you know,
and once again it's a family
account.
Okay fine,
that's something you're going
through.
But if you're posting that and
(39:29):
then explaining everything
every doctor said and
everything,
every nurse said,
I get that you think you're
raising awareness and you are,
but what does that do?
Yeah.
What benefit does it actually
have?
Why do you think the world
gives a fuck about your
journey?
Why do you think that it's
(39:49):
even gonna make change to,
to divulge That None of the
followers are gonna be like,
I should write to insurance
companies now and tell them
that their policies are wrong.
Like nobody's gonna do that
Like it's not gonna create
change.
Sorry.
Exactly.
Like there are other ways to
create change.
Um,
the recess project for one
thing,
(40:09):
it,
there,
there are other ways to do
this without just,
you know,
having your child's organs
splayed open on Instagram or
anything like that.
This is the big argument that
I use for not answering
questions in public.
You go out with your kid,
your disabled kid in public,
someone walks up to you and
says hi,
what the fuck's wrong with
that kid?
And you wanting to be the
(40:31):
educator,
you go and you tell them
everything.
Oh it's in my case it's
arthrosis,
it's a congenital birth issue.
Da da da da da da.
You give them the whole
rundown.
Do you honestly believe that
person goes home that night
and while they're sitting with
(40:52):
the family at dinner,
that person goes,
Hey,
hey kids honey,
you know,
I learned something today.
Did you know there's this
thing called arthro graph
hosts.
Do you think they even
remember it by the time they
get to their fucking car after
walking through the parking
lot?
Absolutely not your disabled
(41:14):
children are not Pokemon to be
collected.
So you can read through the
little polka dex by anyone who
wants to take a picture.
They are real live human
beings just trying to live
their lives in a world that
ultimately will treat them
like a piece of shit every
(41:34):
chance they get.
And we're done with it.
Yeah.
We've had enough I try to
think about my social media
accounts,
especially now that I feel I'm
on this journey of education
and enlightenment is more what
would I have would've posted
prior to Leno's birth.
That's how I try to put my
(41:55):
mindset like,
well what would my social
media look like prior to Leno
being disabled?
Right.
And that's how kind of I try
to filter what I put on the
internet because why was I
really changing it and making
it all about Leno to begin
with,
I guess is really the thing.
But sometimes I just simply
(42:15):
think about what would I post
prior to disability?
What would I post about my
children prior to that?
You know?
Uh,
I don't know why that journey
sometimes you kind of get you
just like,
I gotta post about my disabled
child overshare,
overshare,
overshare.
It's wild that it's such a
common occurrence.
I don't really understand it,
(42:36):
but it is very common for that
to happen.
I don't know how to change
that And it consistently
happens.
That's the thing I think like
I overshared at the beginning
and I was trying to like build
a community and like you can't
relate to other people in your
lives that aren't dealing with
a disabled kid.
So I was trying to relate to
other people and like put out
(42:57):
the feelers and stuff and so
there's just,
I I think that's what Courtney
is kind of saying is that like
that progression has to happen
where it's like,
yeah,
okay we can't fault anyone for
oversharing at the beginning
but then phase it out Yeah you
gotta,
you gotta grow Though.
You gotta grow.
You Eventually have to move on
from that.
Yeah.
(43:17):
And I'm seeing people who are
like consistently doing it
after like 13 years who are
not,
who have other kids and are
not posting pictures of their
other kids in diapers or in
underwear or anything like
that.
But like they have a 13 or 14
year old that they're doing
that with and it's like,
where why are you treating
your disabled kids so
differently?
ex.
Exactly.
(43:37):
And like I've,
I think I've posted a couple
times on like other people's
like,
hi,
I'm just wondering um,
when was the last time you
made a three and a half minute
video about how one of your
abled kids takes a shit ex
Exactly.
Exactly.
Does the world really need to
know this?
Cuz I promise you they don't.
Mm-hmm Yeah.
And once again,
(43:58):
you know,
yeah we can,
oh we can absolutely shame
people for oversharing at the
start,
but we can also educate and
then forgive.
Yes.
Mm.
And then if you know,
they don't listen,
oh my God,
how dare you say that I can't
do that with my child.
Things get a little more blunt
and it starts like,
no,
this is the damage you're
actually doing.
(44:19):
Because the other thing is I'm
not even so much against
sharing the journey,
but it's not your journey to
share.
Right?
No it's not.
It's absolutely not.
You Don't own it.
Mm-hmm.
you know,
and worst of all,
even if you think you own it,
you have no right to give it
away for free.
Cuz I've said this on my,
on my post a couple times,
that your kid's journey,
(44:39):
your kid's story may be the
only damn thing in the world
they have to monetize.
Yeah.
Mm-hmm.
it's a valid point too In a
world that only cares about
how much money you make mm-hmm
and you know what financial
value you bring so you can pay
your own damn taxes and pay
for your own damn
accessibility.
Mm-hmm I'm dealing with this
now cuz I'm working with
(45:00):
something called the Recess
Project,
which you know,
we're trying to put accessible
playgrounds in place,
you know,
one piece of equipment at a
time in a world where
everybody wants to find an
excuse to treat your disabled
child like shit,
why are you not getting behind
the people that are already
fighting to make sure your
disabled child is not treated
like shit.
(45:20):
100%.
Because I'm telling you right
now we're coming,
we're we're coming to a point
where this,
this shit is only gonna start
to get worse for a while if
certain people get in like
larger power places,
both in the States and Canada.
And if you still can't say the
words,
like if you legitimately
cannot say the word disabled,
then you're not helping,
(45:42):
you're part of the problem and
we will treat you like you're
part of the problem.
If you're not going to get,
you know,
behind disabled people,
then you're part of the
problem.
And when if we have to roll
over you,
we will.
We're Done.
And that's the thing too is
that it's it's the disabled
adults,
the ones that are leading the
community that parents really
need to get behind.
Not the strangers commenting
(46:04):
thoughts and prayers cuz
that's not gonna change
anything.
No.
Yeah,
exactly.
We definitely want to have you
back on Wes.
I think there's just so much
we can talk about and I think
there's so much you,
you bring to the forefront in
regards to disability.
But before we end off today,
is there anything else you
wanted to add before we kind
of close up?
I'll just do some quick plugs.
(46:25):
My merch store is currently
offline.
I am rebuilding but it's gonna
take me some time.
Follow me on Instagram west of
Disabled Land and follow the
recess project and please have
me back cuz you both know I
can talk forever.
No,
we will definitely be having
you back.
Might be fun to put a fuck
count this.
I know,
Right on this one.
We'll do like a,
(46:45):
a drinking game for everybody
who's listening.
Yeah.
Right.
Oh God.
People will,
everyone will die.
Die people will Die.
I just wanna thank our
listeners who are tuning into
Bitching and Bolusing.
I wanna thank Wes for coming
on the show.
Thank you so much Wes.
It was much fun.
So much great information.
I think you have been such a
vital,
um,
advocate,
at least for me and my journey
(47:06):
and I know the same for
Courtney and like Wes said,
everyone follow the recess
project,
um,
follow Wes of Disabled Land,
um,
and then follow Bitching and
Bolusing on Instagram.
And thanks everyone for
listening.
Thank You.
And don't be a dick to
disabled kids online.
Yes,
don't do that.
Yes,
All right everyone,
(47:27):
thank you so much.
Thanks for listening to the
Bitching and Bolusing podcast.
Be sure to like and subscribe
for future episodes.
Previous episodes can be heard
on Podbean,
Spotify,
apple podcast and iHeartRadio.
If you like what we said,
please be sure to give us a
share.
You can follow us on Instagram
at bitching and bolusing and
you can visit us at
(47:48):
www.bitchingandbulling.com.
Popular Podcasts
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.