Disabled Isn't A Dirty Word

How activist and content creator Annie Segarra is trying to destigmatize disability.

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Episode Transcript

Speaker 1 (00:05):
Hey, this is a Bridget and this is Anny, and
you're listening the stuff Bomb never told you. Now today
we're talking about the idea of quote overcoming disability. This

(00:25):
is the phrase I heard quite a bit after the
death of Stephen Hawking. A lot of folks were talking
about how it was so great that he was able
to quote overcome his disability to achieve something great. I
kind of couldn't help thinking that this whole idea left
a really rotten taste in my mouth. Yeah, it was.
It was a heavy sigh. It was a heavy sigh

(00:47):
moment for me as well. I'm I'm a very big
fan of Stephen Hawking. That's I read one fiction book
and one science book. I alternate, and I went through
all of his books and usually had to reread them
twice because it's danse It's dance. Anyway, That's not what
we're talking about specifically today. I mean it kind of

(01:10):
is because he is someone who I mean, his disability
was a big part of who he was, and he
was very vocal about that, and so you know, when
you're reading someone's contributions, like he's talked about how he
doesn't feel shame around being disabled, and that seems to
be something that plays at it as work. I would say, oh, yeah,
absolutely absolutely. Um and some numbers three you're here. They

(01:33):
were nearly forty million Americans with a disability in representing
at twelve point six percent of the civilian non institutionalized
population according to the US since this Bureau. But how
often do you see that in our media? Um, not
that often at all. We actually don't see nuanced depictions

(01:55):
of disability in the media really at all. When you
see someone who's disabled in a movie or on TV,
either A they're so tragic and they hate their lives
and you know, nothing good ever happens to them, or
be they only kind of exist to make the able
bodied person feel good and so you're only really experiencing
their situation via an able bodied person. And one of

(02:18):
the ways that I I really sort of have a
problem with this that it plays out is this idea
of quote inspiration porn, where it's these prom prosal favorite
where it's these prom posal videos where an able bodied
person will ask a disabled person to prom and the
subtext is, Oh, that's he's so brave, that's so big

(02:42):
of him, Like, what a what a good person? What
a good person, and then you feel like a good
person when you watch it because you're connecting with the
person who was doing the quote like brave act of charity.
But when you break that down, it's actually really insultating
because what you're saying is an able bodied person couldn't
possibly just want to go to prom with someone who's disabled.

(03:02):
You know, It's like it's like a it's like an
insult when you unpack it. Yeah, it really is on
a much lesser, much much lesser scale. My junior year,
this guy asked me out, I will say, probably out
of pity, and my mom thanked him in front of
all all of my classmates as if he had done

(03:24):
this grand gesture just to do me the honor of
asking me out, because no one else was going to
let's face it bridges. Yeah, I mean, couldn't he just wanted? Like,
what your mom was really saying is that anyone who
would take you out is do being an act of charity. Ye,
that's true. Yeah, and again this is a very minor

(03:44):
thing compared to what we're talking about today. But I
felt terrible. I felt really bad. Oh my goodness, I
guess like my value was less yeah, Well that's the thing.
Nobody wants to be somebody else's charity case. Nobody wants
to feel like they're you know, someone is spending time
with them or doing something with them as an act

(04:05):
of charity or to make themselves still good. And again,
why that's so problematic, it's because it totally it's it's
just almost invalidates the agency of the other person, right,
So like people aren't asking the disabled person how they
feel about this experience. You're only experiencing it to the
lens of the able bodied person. And that's not okay.
It's completely taking away folks as agency. After this quick break,

(04:30):
will be joined by Annie Laney another Annie, but this
one spelled a little bit differently than me. She is
a YouTuber, writer, artist, speaker, and advocate. Her video on
why saying someone quote overcame their disability was super helpful
in our understanding of why this perhaps well meaning sentiment

(04:50):
can actually be limiting. Annie, I am so so glad
you could join us today. Thank you so much for
being here, Thank you so much from finding me. So,
you know, we live in kind of a depressing world

(05:11):
where I feel like folks are thirsting for sort of
uplifting content on social media. But do you ever feel
that people with disabilities are kind of used as I
don't want to say inspiration porn, but inspiration porn where
you know, a seemingly heartwarming story goes a viral on
social media and everyone is supposed to swoon, but actually
when you break it down, it's actually a little bit gross. Right, Um,

(05:34):
well that's actually I don't know if you, uh, we're
aware or not, or if you just um stumbled upon
the word. But so yeah, the inspiration porn is actually
a coin term by a disabled activists sell a young Um.
She brought it up the first time and her ted
talks what was it called? I think it was called, um,

(05:57):
I'm not your inspiration something in one of those lines,
um about how like she, as a disabled child would
kind of like get these certain glamorized participation awards for
stuff that maybe she didn't even participate in. Um, and
she could tell that it was because of her disability. Um.

(06:21):
So inspiration part I want to like try and like
smash it into a small compact definition. It's essentially when
um in in a narrative, right, and a disabled person's narrative,
a disabled person is being objectified for the quote inspiration

(06:45):
of the non disabled gays or the abled gays. Uh.
So this happens a lot with like Um, I see
it a lot with like stories of disabled people being
asked out to a prom and even and you know
those promposals that go viral and things, and it may

(07:06):
not even be the most glamorous or viral worthy promposal.
It's just the fact that the disabled person was asked
to prom and people start crying and all these things.
And I have difficulty understanding that reaction to a degree.
I can understand that people think that it's sweet to

(07:27):
do nice things for people, sure, but also I think
that if people kind of really took it, took a
moment to think about what they're feeling and why, it's
typically because they have a certain bias about disabled people
and certain assumptions about disabled people, and so for them,

(07:53):
it may be very surprising that somebody would ask a
disabled person at the prom and it would be so
pity or for kindness and not because they genuinely want
to be with them. Um, which is a messed up
assumption to make. Um that that is inspiration point that

(08:13):
is objectifying disabled people for their own uh inspiration for
their own jolly is for their own good feeling that
they get for themselves. I think that's kind of where
it comes from. They use the word porn specifically, um
because it's kind of like a jerking off situation there.
It is, it's for their own feel goods without really

(08:37):
without really thinking about what it is that they're enjoying
themselves too. Does that make sense? Definitely? And I think,
I mean, I think the use of the word porn
is so telling because it really is not about the
disabled person. It's really about an able the able body
gaze feeling good. Like, oh, I just watched the video

(08:58):
of a disabled person being asked out to prom that
the able bodied person that must be so big as them,
Like they're such a good person and I am a
good person for feeling good at watching it, like everybody
is getting off on feeling good and no one is
thinking about this actual disabled person and what that experience
is like for them. Yeah, their actual autonomy and like

(09:19):
you know that they consent to go viral and things
like that. Uh, it's not just like proposals are like
my big example, but like it goes for you know,
there was like a news story about an artistic young
man who got a job at Starbucks and that went viral,
And I'm like, why why is it a viral story

(09:43):
that a disabled person got a job? I I honestly,
honestly don't understand that. Shouldn't this story be about job
inequality for disabled people? How can we make jobs more
accessible for them? Like? Shouldn't those be the stories that
we're reading? Not oh good on this one guy who

(10:06):
hired a disabled person pat on the back, Cookies for you,
trophies for you. I I don't. I don't see what's
so great about someone doing you know, the most basic decency,
the most basic equality that should be already normalized, but isn't.

(10:29):
Um and you know, and I already I can already
hear the you know, the comeback for that, like, well,
it's not normalized yet, so we should be rewarding it
whenever we see it. Um. Sure, but that's not the conversation.
We're not. Nobody's even trying to normalize it. They sense
that they sensationalize it every time, So so that's not

(10:51):
really valid either. You can't say we should reward it
in order to normalize it when you're not trying to
you're just sensationalizing it when ever you see it. Yeah,
I think that's a really important distinction, because if you're
talking about normalizing it, wouldn't normalizing it showing the reality
that a lot of disabled folks are up against an

(11:11):
ablest world that does not, you know, afford them the
same opportunities and afford them, you know, the same basic
things that we take for granted. Isn't wouldn't if we're
talking about normalization, it seems to me that we should
be reflecting this very serious reality and that an autistic
young man getting a job at a Starbucks. It may

(11:32):
be it may fill people with warm fuzzies for some reason,
but the reality is that people with disabilities, they're often,
you know, saddled with this unfair, ablest society that doesn't
afford them these these opportunities all too often, and that
that reality is more perhaps more difficult to show, and

(11:52):
that maybe doesn't give anybody warm fuzzies. And you don't
walk away from that feeling, you know, like you've done
something good or that you're you know, a quote unquote
good person. But that's the actual reality. But we're not
showing that. We're showing the one that gives warm fuzzies
to people who watch it on YouTube. Yeah, I mean
as well. Yeah, just to reiterate what I said is

(12:13):
just then if if your idea of rewarding them its
sensationalizing them the person who did the hiring, right, Because
because notice how will never in these stories really hone
in and talk to the disabled person about how they
feel about whatever is going on. It's always about the
person who hired them or the person who asked them out. Um,

(12:34):
It's always about you know, because people view any kindness
or equality that a disabled person who gets as charity, right,
and so then this charity should be rewarded. But if
we were really serious about it about you know, humanizing
a desailed person, giving their giving them their autonomy, um,

(12:56):
we should be talking to them first. And then we
should be to you know, asking ourselves these questions and
and turning these questions into action. We should be talking
about job inequality. We should be talking about accessibility. We
should be talking about why is this a story? Why
is it headline news that the sale person got a

(13:19):
job or that maybe they got asked out to problem?
Why is that news? Um? And how and how do
we fix the fact that it's news. How how do
we create a more equal society where this isn't a headline,
this isn't um shocking to people anymore. Um and and

(13:39):
so far you know that it's not the mainstream conversation,
but it ends at let's pat the person on the
back who did the quote charity that uh, you know
asterisk isn't really charity totally. So I actually found your
video that I love that. Folks haven't seen it on YouTube,
they should definitely check out your video on the idea

(14:02):
of quote overcoming disability. So after Stephen Hawking died, I
saw so many kind of I assume well meeting stories
about how he quote overcame his disability and went on
to be great. And I even saw this image that
I think I would say went viral where it's Stephen Hawking.
It's his chair kind of in the background and he

(14:22):
is standing walking sort of into the cosmos and kind
of I mean, I get what they are trying to
depict on this image, right, like in the afterlife, he
he can walk and he doesn't need his chair and
all of that. But when you actually think about that,
it's really a super problematic sentiment that you know, that
would depict somebody in the afterlife that way. I really,

(14:45):
I really, I was surprised to see that image go viral.
Clearly connected with people for some reason, but I was
really surprised to see that image sort of all over
the place. Yeah, well I can, I can very easily
tell you what people connected with. And again it's this
objectification of disabled people that they especially wheelchair users, people think.

(15:10):
It's very telling that the word people used over and
over and over again was that Stephen Hawking is now
free of his wheelchair, implying you know what they firmly believe,
which is that a wheelchair is a trap and um,
a wheelchair is a cage. Um. And so that was

(15:31):
really the big part that was very upsetting was was
that language, too, was with freedom and there was a
lot of elements that were problematic sure about the image
because also from what I understand, Stephen Hawking was also
an atheist and didn't believe like being a human form

(15:51):
in the after life anyway. He said that we would
just become stars ast that's what his belief was, right,
So this this painting of like him in human form
walking away from his wheelchair like that's not even respectful
to his beliefs either. Um, but he as a person,

(16:13):
you know, I didn't really talk about his wheelchair at
the trap. He he he talked about his disability in
a way that UM wasn't absolutely proudful, but you know,
proud of it. He would say that he wouldn't have
made as many discoveries as he did and know what

(16:34):
he knew what he knew and learned what he did
if it weren't for his disability. Um, he wouldn't be
who he was without his disabilities. Um. But people want
to cling onto this idea the disability is the end,
so much so that one of the most brilliant people

(16:55):
on the planet was disabled, and they couldn't wait two
seconds after he died to erase his disability from his
story to say, Oh, well, you're dead, so you're not
disabled anymore. Would we do that with like any other identity, right,

(17:16):
Like you're dead, you're not gay anymore, Like you're finally
free any other identity like that? Yeah, you're right. People
would not depict, you know, another kind of marginalized person
like a black person and gay person as being free
in the afterlife. And yeah, it's even even in death.
He it's like double disrespectful because people were taking up

(17:39):
taking it upon themselves to kind of crap on his
personal understanding of you know what happens when you die
and being ablest while doing it. It's like a double
it's like a double whammy. Yeah, it was. It was
really bothers him and and it is a complex conversation, right,
Like people like people got real sensitive about it, like,

(18:00):
I so my disability, I have a chronic illness degenerative
disease and um, similar to Stephen Hopkin something that like,
can you know, really slowly take away my abilities as
I get older which is E D s UM and
uh so and it and it causes a lot of
chronic pain too. So people got you know, they took

(18:24):
it personally and they're like, well, I would hope my
disability is chronic pains, and I would hope that in
death I'm not in pain anymore. I'm like, this is
not this is not invalid, like that that's totally valid. Um.
These are very complex conversations, right, It's not just you know,
one size fits all about these things, and everybody's gonna

(18:44):
have different beliefs talking about the afterlife is so hard,
Like everyone has different beliefs and different fears, you know.
Um and uh so it's it's not going to be
fit sold for everybody. But in regards to Stephen Hawkings specifically,

(19:04):
he was very vocal about what he believes, and he
was a vocal about how he felt about his disabilities,
and it really like was just astonishing as a disabled
person to see what an impact he a disabled person made,
and that the moment he died, people wanted to erase

(19:24):
that aspect of him. Um and and and visualize him
as a completely different person. You know, like that's that's
kind of scary. They're like, he he was a marvelous
person just as he was, and people wanted to, you know,

(19:45):
like reanimate him into something that he wasn't. For what
that's that's a good question. Why why when he died
did they feel the need to reanimate him into something
that he wasn't. Um. And that's something everybody should just
sit with on their own and figure out. Yeah, that's

(20:07):
such a good point. Um, what are some other ways
that people with disabilities are raised where you know their
stories and they're like I feel like that probably that
probably happens so often where you know, this part of
someone's identity is just stripped away as if it's a
shameful or bad thing. Well, there's a couple of different ways. Um,

(20:29):
I think I'm thinking of one person example and one
and the broad example. One person example, I can think
I was Free to call O, who you know has
a giant fandom at the moment. You know, millions of
people in the world are giant fans Free to call O.
But many of those fans quote unquote, I don't know

(20:51):
that she was disabled, and I don't understand how because
like that's you know, um, the majority of her n
is about her disabilities. Uh. Um, But that is the
fact that a lot of people don't know that. In fact,
I one of my videos, um is about that. It's
called why you Should Love Free to Call O, And

(21:13):
it's based on this viral tumbler post that went around
that was titled the same thing, was titled why you
Should love Free to Callo, and it had a bunch
of like cool facts about her that completely erased the
fact that she was disabled. Um, she had polio at
a really young age, should believe between like six and eight,

(21:33):
and so one of her legs. Her right leg was
smaller than the other, so she already had difficulty walking. Then,
of course her big bus accident when she was a
teenager um, which broke practically like every bone in her body,
and she dealt with chronic pain and weakness and illness

(21:54):
and miscarriages for the rest of her life, having to
spend most of her life lying down in bed because
of the pain. Um, she she had to make her
own accessible way of painting, or which her dad created
an diesel for her that would like face down at
her so she could paint while she laid in bed. Um.
And this is information that a lot of people just

(22:16):
were not aware of, and like, she's one of the
most famous freaking painters in the world, and people kind
of just really wanted to shove her disability under the
carpet and just forget that that it happened. And I
don't know how you can. You know, for me, her
art and her disabilities they're not really separable, but people

(22:40):
managed to do it. Again, I think it's really sad
that people, you know, in that way, we have like
such famous, marvelous people who happened to be disabled, and
people just they're so scared of disability. They don't want
to remember them way they or they don't want to

(23:01):
think about it. Things like that, you know, they make
it very very tragic, um, instead of realizing that it
was part of them, it was part of their experience,
their their life, it was part of their identity. Um.
So it's really sad that that happens. Um. But that
was just like, you know, that's just one particular example.

(23:23):
I think that in general today we also have people
who are scared of the word disability period um, of
the identity disabled period because a lot of people think
that it's a bad word um. And it's actually such
a huge umbrella, right, Like you could identify as disabled
if you have mental illness, if you have chronic pain,

(23:45):
if you have chronic illness. Um, And people are very terrified,
you know because for a long time, people I guess
they kind of equate disabled with like invalid, which is
really gross, um, you know, devalued ugly um. Definitely that

(24:09):
because one of the common things you get as a
wheelchair users you're too pretty to be in a wheelchair, um,
all those things. There's they have some kind of weird
phantom visual in their minds about what it means to
be disabled. Um, so I'll personally get things like you're
too pretty to be in a wheelchair, you're too young

(24:29):
to be in a wheelchair. Um, I'll get really rude
accusations of faking my disability because I stand up from
my wheelchair, which, again, as they mentioned, I have a
degenerative disease, so I haven't lost my ability to walk
entirely yet. I can still do a few steps, um

(24:54):
for short periods of time, but beyond a minute, maybe
five minutes of most, I mean my wheelchair, I can't.
I can't stand up for longer than than a minute
or so, really, And every time I do stand up
or do anything like, um, maybe squat or dance a
little bit, immediately people want to accuse me of not

(25:17):
actually being disabled. So people have a particular idea in
their heads, but what that means, And so I just
hope that we're moving in the direction where it becomes
more neutral and people are more accepting of it. Yeah.
One of the things in your video that I wasn't
really struck by was this idea that, particularly when it

(25:39):
comes to wheelchair use, people think it's a binary either
you're completely you know, depended on your wheelchair or you're not.
And so if you if someone sees you stand or
not using it, they'll you know, be like, oh, you're
faking it, you're not really disabled. And that's not actually
how disability works. But we see so few images of

(26:00):
disability that actually reflects, you know, the spectrum that is
a disability. But like, why why why are we not
showing a more realistic depiction of what it's actually like.
I think it's like full circles, goes back into inspiration porn.
It's um. People like to think of most things is binary, right. Uh.

(26:26):
They think of sexuality is binary or either gay or straight.
There's no such thing as by asterisk. Of course there is,
um there you know, binary genders, um, black or why
that the people A lot of a lot of people
don't have room in their heads for mixed race people. UM.
So for a lot of people, I think it's just

(26:49):
simpler and easier to think of it in that way. Um.
But then again a lot of it falls under media
representation and the stories that people choose to tell. UM.
In Hollywood, in media and television, UM, disabled people don't
really often get to tell their own stories. Um. It's

(27:10):
it's able writers writing disabled characters, and so already they
think they're doing a charitable service just by writing a
disabled character. But then they write a disabled character as
what they believe it means to be disabled. Um. And
then on top of that, not just that, we get,

(27:31):
you know, this awful misrepresentation about what it means and
how life is and how we feel. Because the biggest
example I can give you is that the majority of
like wheelchair users that exist on TV and in movies,
they hate their life. They're like, the only goal I
have in my life is to not be in this wheelchair.

(27:52):
And that's pretty much just a cookie cutter like character
for any um, for any character with a wheelchair in media. Um.
But then they you know, twist that nice season further.
And pretty much any time in a in a movie
or a TV show that you see someone stand up

(28:13):
from a wheelchair, it's to reveal. It is to reveal
the person is faking and deceiving somebody. Yeah, that's true.
So far, I've never seen I have never seen a
wheelchair user stand up on TV or in a movie
just because that's what is in their ability to do.

(28:37):
It's always with a gun done down like Stella Novella reveal.
Uh oh, and you know it's the disabled villain trope
to this. It's uh, she probably was disabled and now
she's faking it and all this stuff. Um, it's pretty exhausting.

(28:59):
I really honestly blame media for that kind of Um.
I believe because if people they just eat it up,
they just eat it up. And you know, if it
isn't normalized in the media either, and so people believe

(29:20):
what they see, and so now real life disabled people
they get harassed, um, accused, assaulted in public if they
stand up from their chair. And weirdly enough, even when
you let go of your cane for a second, people

(29:41):
will have bad reactions. Um. I had a a friend
of a friend once to stay in front of me. Yeah.
I was arguing with this old man with a cane,
and all of a sudden he started, uh, he raised
his cane and started pointing around at things. So I
guess he really didn't need that cane. Huh. Uh. This

(30:03):
person was fired up, so I couldn't even like correct that,
and the guy was the villain in the stories. I'm like,
this is such a weird moment to like have to
correct that um, but just because somebody is waving their
cane around doesn't mean they don't need it. But it
was comments like that that really made me feel unsafe,
Like it's like you really you really believe in your

(30:25):
mind that because somebody picks up their cane or doesn't
lean on their cane pointing at something with their cane,
that means they don't need it. Why why would you
think that? And also it's not like it just shows
the ignorance of it all. It is ignorant, and I mean,

(30:47):
how many people out there are faking needing a cane?
It just it's sort of it's like this reality that
doesn't exist right, Like it's it's so doubling down. And
I think tropes that out disability that we've seen in
media that we think it's real, but I don't feel
like it is real. It's the conversation is very hard
to have because we don't have real statistics about it,

(31:11):
you know, like disability statistics are really really hard to find,
especially like how many people like are disabled in a country,
Like those statistics are so hard we we have like
of the country is is disabled, but what does that mean?
Like the truth we told a lot of people are
have undiagnosed disabilities. People have chronic migraines and allergies, mental

(31:35):
illness like that are not document them anything. So so
that's statistics is likely a lot more than of the country. UM.
And when it comes to statistics about saking, we just
don't have any. All we can do is kind of
try and trust what what our experiences are. And that's

(31:56):
where things get really muddy. UM because as uh so
I have you know, large social circles of disabled people,
and so what I bring to the table and my
experience and observation is how often they are harassed and
accused of faking their disabilities when they're not. UM. Most

(32:16):
of them have chronic illnesses and use mobility aids to
help them get around. UM. Without them, they wouldn't be
able to. But they're not paralyzed or or entirely reliant
on those mobility aids. UM. But then if I speak

(32:37):
with someone who is one of those angry people who
is on the hunt for disability fakers, UM, they'll tell me, uh,
in response to something like I don't think that really happens,
they'll say yes, because I know a person they told
me that they fake it just to just to get

(33:00):
their disability parking paths or whatever. And all I can
all I can respond with is like, that's such a
freaking anomally. So it's like that rarely happens, and and
people can still be wrong unless somebody fully admits to
you to your face, says hey, I'm faking this thing

(33:26):
because I want this thing, then you will never know.
I think somebody also said, oh, I know for sure
this person is faking. I'm like, why, how do you know?
I'm always waiting for them to tell me. This person
confessed to me that is the That is the the
answer I want. When I said how do you know,

(33:47):
the person said, I know that she's faking because she
was using her cane and then when she was about
to miss the bus, she lifted up her cane and
she ran to the us. I said, that's that's not
That does not mean the person if baking. I couldn't
do that too. I could do that too. It's called adrenaline.

(34:11):
It's called like I use a cane mainly for balance.
Uh my, my joints are very weak and they collapse
kind of like a those wooden toys that connect the
joints at the with a string. Basically, my joints are
like thin strings. Um, so I can easily like fall

(34:32):
down and injure myself. Um. And so while it is
a risk for me to like sprint a few feet
um when adrenaline kicks in, Like it's like, um, my
dog is about to get injured or run into the
street or something I might do. I might risk it.

(34:54):
I'll risk injury and like sprint um like five ft
in front of me or something. Um, but I risked injury.
I probably hurt myself. I probably am going to feel
it in my muscles with my alga pains later. That
doesn't mean that that my disability isn't real. Like, so

(35:16):
you can't you can't even look at situations like that.
Somebody hobbling and then going and then running doesn't mean
that they're not disabled or that they're faking it. The
only answer I'm willing to accept is somebody confessing to you.
But that's what's up, because your observations they they're they're

(35:39):
not full proof evidence of that. We'll pick up the
conversation after a quick break and we're back. This is
sort of a larger point or a larger frustration of mine.

(36:01):
But when people sort of appoint themselves the medical professional
of a stranger, so they'll say like, oh, you know
you're not really disabled because I saw you do X,
or you know you're you can't be you can't be
healthy because you are, you know, heavier. Like like, I
don't know how we got to a place in this

(36:22):
society where strangers will assert that they know something about
your personal like medical or physical body when they don't
even know you, Like who is this person who is
watching someone run for the bus and then you know,
making this, making this this giant leap, this giant claim

(36:42):
about their body. It's just I I will never understand it,
And I don't don't know how we got to this
place as a country, as a world. I try and
figure that out too. I try, And I think that
there's like a parallel with like beauty and status with it.
UM think that once we started because like once upon

(37:05):
a time, the the huge beauty narrative in our media
and advertising was you have to be thin, whatever it takes, right,
So everything was whatever it takes, whatever it takes, self harm,
do whatever you gotta do. But you've gotta be curving.
You've gotta be skinny whatever. The body trend of the

(37:25):
moment is um and uh. Very recently it became about health, right,
you Like, the healthy body is the most ideal body
now um and and people try to play games with
that working so much so like I'm okay as long
as they're healthy that and it's always very judgmental. And

(37:47):
it's judgmental because now health is such um and and
it always has been. But really now, especially in regards
to like beauty, like able status, right, people are really
really distrumental because they're insecure about their own stuff. They're
insecure about where they stand in regard to their house.

(38:11):
And it doesn't mean that they're not healthy right now.
In fact, a lot of them, you know, they prioritize
their health, but it's more about their insecurity about you know,
that kind of thing ever happening to them. There's you know,
for people, their biggest fears to become fat, their biggest
fears to become disabled. H And it's not something they

(38:32):
even try to hide. Like people will see me total
strangers will see me in public in my wheelchair and
say to me, you're so brave. I would kill myself
if I were you. Um which is not a compliment.
But they pour a little angels bless their hearts. Thanks,

(38:57):
so they think that it's a compliment. Um. And and
it's it's just the entire picture is just very very sad. Um.
And I thought that that quote compliment is disturbing and

(39:23):
just such a sad reminder, uh about what people think
about disability. You know, it all comes full circle. It's
that people have this unquestioned belief system about disability. They're
just ready to believe that it's tragic, that it's ugly, um,
that it's the end of something. Ah. When people say

(39:47):
something like you're so brave because you use a wheelchair.
So I've had people say I don't know how you
do it to say I wouldn't be able to do it. Um. First,
those kind of comments are based on misrepresentation. They they

(40:10):
likely don't know any other disabled people in real life.
All all they know, all they have to go on
is based on the movies and TV. And like I said,
all those characters hate themselves because they use a wheelchair, um,
which is not based on reality. I mean, sure there

(40:32):
might be you know, people who that does reflect their reality,
but that's certainly not everyone. Um. And the second thing
I have to say is that you can't say I
wouldn't be able to do that if I were you,
or I'm not as brave as you or whatever. Um.
People don't know what they're capable of until they're in it,

(40:55):
and um Like, clearly I haven't been to use a
wheel treats in my entire life. My abilities. I started
losing my abilities um about three or four years ago,
m losing my ability to walk. Now. My arms are
are a lot weaker as well, UM, mainly my hands,
Like sometimes I have difficulty cutting food because basically all

(41:18):
my joints are just you know, strings are jello, just
very weak, very fragile. UM. And so there's been moments
where it's been very scary. UM, But it's my body
and my life and you just have to you know,
work with what you've got. It's it's not I don't

(41:43):
I'm not like this because I'm tough or because I'm brave.
It's because it's my life. And and people need to
kind of get that picture together that honestly, we're all
probably going to be disabled at one point or another.
People equate getting old or becoming an elder with being disabled. Right,
they're like, Oh, I'm gonna be old, I'm gonna have

(42:05):
to use a walker, I'm gonna have to use a
cane or whatever. Um, So that's disability. We're we're all
probably gonna be in that space at one point or
another in our lives, and it doesn't have to be
such a scary thing, especially especially if we're all you know,
prepared for it in an emotional, psychological, physical way. Well yeah,

(42:31):
that's why I love so much of what folks like
yourself are doing, where you are sort of showing hey,
disability is not, you know, a dirty word. I saw
this shirt on your Twitter, disabled joy, and you know
it's a we don't allow for disabled folks to be happy,
love their lives. I'm thinking about this story that I

(42:53):
that I found out when I was researching for this episode.
This teenager who was an author, Melissa Shank, She support teen.
She wanted to write a book about a character who
looks like her. She's in a wheelchair, and so she
came up with this character who is in a wheelchair,
who loves YouTube, was very happy, who has a you know,
a great happy life. And when she went to pitch

(43:14):
this book, publishers were like, Oh, people aren't gonna buy
you know, she's too happy. People aren't gonna buy that
she's a no wheel chair and that she has a
great life that she loves, or could you make her
give her a sister and her sister isn't in a
wheelchair and she is. That's a more interesting story. But
what they're actually saying is we need to understand this

(43:37):
character through the lens of somebody who's able bodied, because
otherwise people's heads will explode. And if this character who's
in a wheel chair is just a happy, go lucky
fourteen year old who loves YouTube and ponies or whatever,
people won't buy it because she's not sad enough. And
I think that really shows a lot about how we
what we think about disability and and and the story

(44:00):
is that we're willing to sort of accept, you know,
I was really you know, I remember seeing on Twitter,
um this activist Kia Brown with her hashtag disabled and cute. Right, Like,
the stories that we tell about folks who are disabled
are so limiting, and it's like we're not We're so
not comfortable with anything else if it's not I'm disabled
and hate my life or I'm disabled and you know,

(44:23):
it's awful. We just don't. It's just it's and I'm
not saying those stories don't exist, because sure they probably do.
Like able body people hate their hate their lives, right like,
But if we only allow for that one, that one story,
you know, it's it's all we see, right Well, if
we did it to any other I'm going to go

(44:43):
back to uh, like gay representation and again I'm I'm
gay identify as clear um like. And that's also something
that we're that we're just now starting to see more of.
But once upon time and gave representation, it was just
so sidal gay people or gay people who had been

(45:04):
victims of violence or murdered, um. And so that was
just like one one take on what it meant to
be gay. It meant that you either became ill and died,
um we're violently attacked and died, or you hated your
life so much you committed suicide. That one up a time,

(45:24):
those were like the only stories gave people really got
to see. And now it's kind of like spreading into
more um and hopefully more keep coming, more happy endings,
more diversity in regards to LGBT representation. UM. But that
is kind of what's happening right now. I think with

(45:47):
the stabile representation is like people are only accepting this
one take. And UM, you know, if you don't live
in a very diverse place, if you don't have a
diverse group of friends, that's all you have. All you
have is what you get through the TV and the
movie screen. Um. And so those are the only ways

(46:07):
you can for form opinions about groups of people. And
you know, it just it breeds prejudice with people who
you know are only surrounded by their own communities. UM.
I think I'm thinking specifically of like you know, Middle America,
where like it's not very diverse in certain spaces. Um

(46:30):
and UM, you know, I just I really hope for that.
I really hope that we're in a time where like
disabled people are really starting to be heard. I hope.
So it's because it's the erasure has been very very heavy. UM.
A story that I'll mention sometimes is that in the

(46:53):
same year that the Pulse massacre happened, which was very
hit me very hard at Pulse of the place that
I used to go to all the time when I
lived in Orlando, even before that. UM. And I feel
like my little gay heart like grew up in that
place in a way. UM. And about a month after

(47:16):
that happened, and we saw like you know, so many
like large spaces, you know, like their buildings up in
rainbows and support and like there was It was a
moment where people kind of acknowledged the hatred that LGBT
people face, and they wanted to show their support. They

(47:37):
wanted to say, we know that some people out there
hate you, and some people are willing to murder you,
but I know that you are supported and that the
community has your back. UM. And then the following month, Uh,
it wasn't us, but it was still very vital in Japan. Um,

(47:58):
there's a massacre, the second largest massacre Japan has ever had. UM.
A man went in to a disabled community home at
night and UM massacred a lot of them. I think
that he ended He ultimately murdered nineteen people and injured UM.

(48:24):
I think like forty more. And it was with it
was it was an able massacres, an able to attack.
He had pre written to parliament that disabled people were
a burden on the economy and a burden on their families,
and that he knew how to get rid of them,

(48:48):
and that he said that he could get rid of
hundreds of them in one night, um for the betterment
of the country. Ah. And when that happened, there was
no international response, There was no response period, and that

(49:09):
like it really really hit me again. Like this was
one month after Pulse. I was already like in a
in a depression from that and then it and my
depression got worse because of the silence. Were the only
people I saw talking about this story were other disabled people,

(49:31):
And I kind of felt like disabled people were like
screaming like, look at this, look at this, look at
what happens. Look at how able is um kills people?
And nobody cared um. And it just felt and I
just felt like nobody would care if we disappeared. And

(49:52):
and that's the that's the that is the message that
just keeps being told all the time. Again it goes
back to Stephen Hawking, right, like he he became one
of the most marvelous, brilliant people on the planet and
he died. And the first thing people want to do

(50:13):
is a racist disability. People are constantly sending the message
they don't want disability to exist, they don't want anybody
to be different. They don't want anybody to um have
any different needs from them, or or different ways of

(50:34):
stimming or being quote weird around them or look weird
for them. They would rather just a solid be gone. UM.
So I say all that with the intention of kind
of rounding up like that is the deep dark space

(50:59):
where all these kind of biases and assumptions about disability
comes from. The bottom line for a lot of people
that they wish that disability wasn't real. The bottom line
is that a lot of people think that it is
a burden and it is tragic. Um. But optimistically, I

(51:22):
hope that that's the last time something like that happens,
not just the violence but the lack of response. UM.
I hope that the more visibility we have for disabled people,
the more people will care, and the more people will
learn um, and they'll see us as actually human, as

(51:46):
opposed to burdens, which a lot of them do. Mm hmm.
That is so real. I mean, damn, And I think
it's it's it's the silence, right, It's this awful thing
happened after Pulse and just the silence because it did
barely rate. There was no international outcry. And I think

(52:08):
it does to me. It does come back to exactly
what you just said about, you know you, whether it's
the lack of you know, disabled representation in media, movies, films,
or it's the silence when nineteen disabled people are are murdered.
You know that. I feel like both of those kind
of come from the same space, And I think you're right,

(52:29):
it's this discomfort. It's this we don't even want to
deal with it. We don't even want to see it,
we don't want to acknowledge it in any of the ways.
So we've talked quite a bit about, um, you know
how folks of disabilities sort of are not well represented.
Who out there is sort of getting it right or
their content creators or films or movies where you think
I want to see more of this kind of thing

(52:51):
when it comes to representation. UM. Well, first, Speechless, there's
the sitcom on ABC. Um is doing a really cool job. Uh,
And they do have disabled writers on staff too. They
have Zach Anner, which is a comedian actor YouTuber. UM

(53:13):
it was. It was really great. In the first season.
For the first time ever, I saw the characters used
the term inspiration for and I was like, oh my gosh,
that's great. It was like getting some like visibility for
like disability culture. Um. And they like, you know, did
a one oh one with it. They're like, I think

(53:34):
the disabled character um was being used in someone's essay
and and he said, oh great, he's using me as
inspiration for it. And somebody says, what's that and someone
responds to him, it's be a getification of disabled people too,
for the feel goods of able bodied people. UM. So

(53:56):
I thought it was really like brilliant moment on television
and got really meat. They got me really excited. Um. Uh.
The Switched at Birth I heard is kind of debatable
that they had a lot of deaf actors on that show.
I think anybody who was a death character was also
death in real life. That was really great, um. And

(54:19):
I'm sure I'm missing quite a few things like there's
been like, uh other things. I'm a big advocate for
disabled people playing disabled characters, meaning of course disabled actors
playing disabled characters, um, because that's another bias and discrimination
in the workplace that happens. Um. People will hire able

(54:42):
bodied people to say wheelchair users, and they don't even
give wheelchair using actors an opportunity because oftentimes their audition
spaces aren't wheelchair accessible, Like there's no elevator into the
audition room. Um. So that's another that's an their workplace
discrimination thing that happens. Um. And besides that, you know,

(55:06):
I think, you know, people creating their own original contents
a beautiful thing. So I think YouTube is a beautiful thing. Um.
There's a Jessica Kelgren Hayes on there who she does
a really great job at a showcasing her life as um,
a distabled lesbian. Uh. She also has a connective tissue

(55:30):
disorder and pots so very relatable for me. Um. Also, chronically,
Jackie is doing the Chronically Ill reality show of Our Dreams.
She produces a video every day of her life with
chronic illnesses, and she has one of the only times

(55:51):
I get to see, you know, on video, somebody who
is like me, who like uses a wheelchair but can
walk around a little bit still and and things like that. Um.
So I'm just hoping, you know, Internet content creation is
kind of small and relativity too, you know, mainstream media

(56:14):
like Hollywood or television. Um, but it's still big enough
that I truly believe that it can make an impact.
So for now, the real true like heroes for me
are the people that are creating their content on websites
like YouTube. UM. In your video you talk about how

(56:37):
the language of overcoming disabilities sometimes it's disabled people against
each other. Can you explain that a bit to us?
Oh yeah, UM, okay, well Jesus, I took seven minutes
to say all that. But UM, so yeah, the overcoming

(56:58):
disability UH in short, I don't like it because it
implies that, UM, whatever is being done uh with a disability,
that action and the disability are mutually exclusive, which if
you're using the term overcoming disability, that is clearly false.

(57:20):
It's an oxymoron that you just did. UM. But the
other way that is that is used is people who um,
you know, rehability or recover from something. UM. Specifically, it
will be used in regards to like a doctor saying, oh,

(57:41):
they'll never um do this action, and let's just say, oh,
we'll never walk again, um, and then look at him
now he's walking, prove that doctor wrong or whatever. And
people will use stories like that of like these quote
miraculous recoveries UM to put pressure on other disabled people

(58:07):
to do the same thing UM and that will come
from like family, friends, um, our our bosses, anybody. They're like,
if if this disabled person can do it, why can't
you um. And the implication there is that you are

(58:28):
you're lazy if you don't try as hard as that
person two not be disabled anymore. UM, which all that
is very toxic because it's not going to be the
same for everyone. And also sometimes doctors can be wrong
when sometimes doctors say this person is never gonna walk again,

(58:51):
see again whatever um is the case at the moment,
and they are just wrong. It's not some kind of miracle.
It's not because the person tried harder than other people.
Sometimes they're just wrong and things change. UM. And it

(59:11):
also just introduces us to um the belief that people
have that if you are not trying to not be disabled,
and you're not worthy of anyone's time, then you are
a lazy person. You are a burden to them because
you're not trying hard enough to not be disabled anymore, UM,

(59:35):
which is so toxic. Some people just they're disabled and
that's it, like sorry, they're they're not going to change,
They're not going to get quote better um. And instead
of inviting them to hate themselves, for it, it would

(59:55):
be much healthier. Two. You know, accept what's going go on.
Not to not to give up on your health necessarily,
that's not what I mean either. But accept what's going on,
try to enjoy your life anyway, and and do what
you gotta do. I think so I have again r P,

(01:00:18):
a degenerative disease UM, and I'm very accepting of where
my body is at. While it's there, I do continue
to push my body and push my limits, and I
focused on my health UM as best as I can.
But I won't hate myself for being sick UM and
I won't hurt myself just to prove that I that

(01:00:41):
that I'm capable of certain things. UM. I have to
I have to care about myself and I have to
love myself and love my life UM, no matter what
it looks like, no matter what's going on, I just
have to find I have to find the gratitude uh
and the accept of that moment. But again, because of

(01:01:04):
able is UM, people would rather pressure disabled people to
no longer be disabled and tell them that it's their
failure if they are unable to accomplish that, right. I
think there's this weird mentality of if I did something,
if I worked this hard to do whatever, then you

(01:01:27):
can to like, like what you said earlier about being lazy,
that there's this perception of laziness which is completely brong
and totally ignorant. I mean, especially in regards to like
invisible illness too. Like a lot of people just have
trouble believing how fragile my ligaments are. Because of my parents,

(01:01:50):
I'm like a thicker, maybe chubby, uh what, brown woman
and a tall woman, and so when I walked around,
like I think I probably have the appearance of someone's
like young and strong, but the truth is that I

(01:02:11):
have the fragility of what some would assume would be
of a like year old woman. Um, which is agism
by the way, because not all elderly people are disabled. Um,
but uh yeah, it's it's I think it's hard to

(01:02:33):
look at people with invisible illnesses and remember, like what
what their experiences are. And then sometimes it's not remember.
Sometimes it's just to believe. Sometimes people just don't believe, um,
what's going on inside your body. And that's really scary.
I think it's really scary as a person that's fragile

(01:02:57):
and sick and doesn't really look like it on the
out side. Um. It then creates an environment where people
have really high expectations of my abilities and I have
to constantly let them down or UM feel forced to
push my limits and harm myself because of those expectations.

(01:03:19):
Um because because personally, UM, I I feel pressure once
I make a commitment to something, and so I will,
I will push myself beyond my limits. I will probably
harm myself just two complete that commitment. But I do
wish in my personal life that like people would have

(01:03:43):
more consideration for that. But people can't consider those things
if they forget your condition or if they don't believe
in your condition. So all that's really hard. Any thank
you so so much for being here today. Where can
folks find out more about all the cool things you're
up to? Um? Well, I am online everywhere as Annie Laney.

(01:04:06):
Um that's a double N I double E l A
I N E y um on YouTube, Twitter, Instagram, and
I am Annie Sigara on Facebook. Um, and uh that's it.
I think. Yeah, I can't tell you how instrumental your

(01:04:27):
YouTube videos have been for me. When I was feeling
again kind of gross dad about that Stephen Hawking stuff.
We were talking about earlier in the episode. Your videos
just nailed how I was feeling. So if you haven't
seen any videos, definitely checked them out because they are amazing.
Thank you, thank you. Yeah, it's definitely overcoming disability. Was

(01:04:47):
a little bit of a sub tweet about all that
Stephen Hawking stuff too. I loved it. Well, thanks so
much for being here. Thank you at a good time. Well,
that was really in my evening conversation, and I am
so glad we got the chance to talk to Annie
about this, and I really hope that we'll see more

(01:05:11):
of these diverse stories soon. Um, and I hope that
you listeners enjoyed that conversation as well, and we would
love to hear from you. You can find us at
stuff Mom Never Told You on Instagram or at mom
Stuff Podcast on Twitter, or you can always send us

(01:05:31):
email Mom Stuff at how stuff works dot com.