May 17, 2022 • 35 mins
Imani Barbarin uses humor and truth to bring attention to the increasingly dire plight of disabled people in America. The pandemic has revealed a broken system that keeps the disabled in poverty. She talks about how she personally deals with the injustice, and what might be done to improve things. Also, what makes a joke a good joke for the disabled?
Mentions:
● Imani Barbarin’s Tik Tok feed: https://www.tiktok.com/discover/imani-barbarin?lang=en
Credits: Curtis Fox is the producer. Our researcher is Yessenia Moreno. Production help from Kaitlyn Adams and Meg Pillow. Theme music by Taka Yasuzawa and Alex Sugiura.
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:01):
Sometimes I'm listening to music and I stopped vibing with
the beat, and I really stop and listen to the lyrics.
And when it comes to hip hop, I am always
delighted by the word play. Right now, I have met
the Stallion's Plan B on repeat. It's a work of art. Honestly,
it's lyrical, it's angry, it's clever. I mean, listen to this.
(00:21):
I should have listened to my first mind and told
your as no the first time, told your as no
the first time. Try to spare this nigga feelings. Now
he thinks he hurt in mind, you cheap, and I'd
be at work while you sleep. My pussy is the
most expensive meal you'll ever eat. Fuck you still can't
believe I used to trust you. The only accolade you
(00:41):
ever made is that I fucked you. You a bit.
If you get the chance, I bet you snitch, You'll
never get a chance to tell me come and pack
my ship. That's just poetry. It is what it is.
And so if you're looking for a great song to
rock out through this weekend, I highly recommend Plan B.
It's just a great fucking song from Luminary. This is
(01:04):
the Roxanne Gay Agenda, The Bad Feminist Podcast of Your Dreams.
I am Roxanne Gay and your favorite bad feminist. On
the roxand Gay Agenda, I talk about something that's on
my mind, and then I talked with someone interesting to
find out what's on theirs on this week's agenda are
inalienable rights. Unfortunately, a lot of us have been reminded
(01:26):
this week that many of the rights we would like
to take for granted we cannot. As most of you
probably know, a Supreme Court decision overturning Roe v. Wade
was recently leaked, and reactions, as you might imagine, have
been incredibly intense because people's lives are at stake with
this decision. One of the things that this has reminded
(01:48):
us is that so many of the rights that marginalized
people would like to take for granted, we simply cannot.
Those rights are contingent upon political whims, and depending on
who's in power, we have more rights or fewer rights.
And that's no way to live. Wondering from one day
to the next, if you will have bodily autonomy, if
(02:09):
you will be able to marry the person of your choosing,
if you will be able to have healthcare, especially gender
affirming healthcare. And so right now we are in a
place where we must contend with this reality and figure
out how do we move forward, how do we fight,
how do we rage against this political machine? And I
don't really have a lot of answers, but today's guest
(02:32):
has a lot of insight into what activism can look
like and how we might use our voices to create change.
If you're on TikTok a lot, as most of us are,
including myself, you might have come across the Monty Barberin
here she is interacting with tape of a televangelist. So
I do not call in sick, I don't call in gay. Hi. Yes,
(02:55):
I would like to call him crippled in all, And
here she is making a trenchant observation about zoom. Probably
the most dystopian thing about this pandemic is how many
times I've heard for all is Happy over a distorted
(03:17):
Zoom call. Her work extends well beyond social media and
Montie Barbara is a disability activist, a writer, a TikTok
phenomenon where she has over four hundred thousand followers. Her
work appears regularly in Forbes and can also be found
in rewire healthline, Bitch and more. She was diagnosed with
(03:38):
cerebral palsy when she was too and often talks about
navigating the world as a disabled black woman. She is brilliant, funny, exuberant,
and she joins me today to talk about her work
and activism and Monty Barberine. Welcome to the Roxanne Gay Agenda.
Thank you for having me. I appreciate it. I understand
that you got your first tattoo at the age of nineteen.
(04:00):
Why was that? I badly one of my own tattoo.
For a very long time, I always loved the idea
of body art um and it really spoke to me
as a disabled person because my entire life I've been
yanked and pulled and told your body isn't function in
this way, and here's what we're gonna do to it,
and here's the surgery you're gonna have. And I really
wanted to have something on my body that was just mine,
(04:20):
that wasn't a scar or a bruise or a mark
or something. And so I got my first stattoo a
nineteen It's heart gm D on my finger because my
mom uses sign all my lunches, my lunch notes to
me heart God, mom, and dad, and then you shortened
it to heart G M D. So that was my
first tattoo. I too, got my first tattoo at nineteen,
(04:41):
and for many similar reasons. You know, I was fat,
and I didn't feel like I had any control over
my body, and in truth, I didn't a lot of
people had control over my body. So I felt like
I had so few options to make choices about my
body that were entirely mine. Tattoos were the very first
(05:01):
time where I felt like, this is a choice I'm
making for myself. And I know that you described getting
your first tattoo as an active body reclamation, and I
found that to be much the same. And I also
found that you can't get just one. And so have
you continued getting tattoos? Yes? Um. The count that my
dad knows that I have like seven, Um, the reality
(05:23):
is I have like fourteen. Um. So every single time
he sees me, he literally points to one's like, is
that new? I'm like, no, of course not. But I
was like fourteen. Now, girl, I do the same thing.
And what's funny is that I'm so I have had
these tattoos for twenty eight years, and every time my
mom sees me, which is often, she asks real brand
new about it, and she's like, well, wok son, what
(05:46):
is that on your Like what do you think it is?
You know what it is? Stop playing games with me?
And sometimes they let Ashen just do the work for
me because you get all blended and they can't really
see it. But if you're more moisturized, they can see
all of it. I love it. In praise of action
est tattoo camouflage exactly now. I know, especially now, your
(06:10):
activism has been incredibly necessary because the pandemic has not
been the same for people with disabilities. What have the
past two years been like? And how do you manage
your rage while holding space for joy? Let me let
me end with the rage part because I don't even
know what to do with that at this point. Um,
but the pandemic really kind of shut everything down for
(06:33):
disabled people. And while a lot of things became more
accessible for no disabled people, I mean things literally just
stopped for disabled people. UM, services stop, certain day programs stopped. Um,
there's now a direct support workers shortage. People are just
not getting back to their programs that they had parts
to the pandemic. Special education had no idea what to do,
(06:53):
had no idea how to operate remotely, so children are
missing their educational goals or are like two years behind now.
Certain people with sensory disabilities to utilize things like tachal
as l communicate because their death bline could no longer
do that, so they couldn't get groceries, couldn't get emergency
care or care at all. Um, we can no longer
(07:14):
have visitors with us at the hospital at that started
a pandemic, so people couldn't have their own advocates or
family members. Um. And this is all against the backdrop
of like, hey, we're finally going to do remote work,
which is something that disabled people have been begging for,
or we're going to finally have remote medicine, which again
is another thing disabled people have been begging for. It's
been really stressful. And then on top of that, we
(07:35):
had medical rational guidelines It said who hears who's gonna
get care if we're at capacity, And it was basically
just stereotypes of disability because all you know, who's going
to be a waste of resources and disabled people would
always come out at the bottom of those types of things. So,
how do you navigate a world where you are consistently
told you go last if you get consideration at all?
(07:58):
And what kinds of strategies can you even use to
to be heard and to be seen? Well, a big
bustling for us with social media and disabled that have
been organizing on social media for years. One of the
most prominent campaigns was Scrypt the Vote, which was started
by Greg Barton, Andrew poll Rang and Alice Wong and
basically got disabled people involved in politics through the social
(08:22):
media lens. And because of that, we are we a
lot of disabled people already had a foothold in like
policymaking and things like that through that public discourse. UM.
And so whenever people discount keyboard Warriors and you know
it works, really know disabled, that's that's all we had. UM.
And so we've been utilizing social media, utilizing earned earned
media from social media in order to get our view
(08:44):
points out of there. When did you come to TikTok
and what have you found to be most useful about
that particular medium? So I turned thirty during the pandemic,
like two weeks into quarantine, and I was like in
my bad crying and the family was like, why did
you find something to do? Find something to look forward to?
(09:04):
And I was like, fine, I'll finally get on TikTok
because I was one of those belligerent millennials who is,
oh my god, it's just Vine, but just longer. And
I was like, I'm too good for this. But I
really wanted to get on TikTok because I saw it
as a platform that couldn't connect people face to face
during a time in which that was not possible. Um
(09:24):
and fine, excuse me. In TikTok very closely replicates like
FaceTime and the way that we communicate digitally now, so
it made a lot of sense as well as there's
an entirely different generation of disabled folks on TikTok than
there are on Instagram or Twitter or even Tumbler. Like
there social media platforms kind of follow generations, um in
different demographics. So I figured if I wanted to expand
(09:47):
my disability advocacy, it had to be on TikTok, and
then I could be a little bit more fun, a
little bit more personal person on that platform. Was there
a specific TikTok that really blew up and got people
starting to really pay attention to you because it is
one of the things that I have found on TikTok
is that it's sucking overwhelming. Yeah, I love it, but
there are so many creators and the algorithm will serve
(10:08):
up what it wants to serve up. So, like, what
really helped you to break through? Well, the first big
tiklock that I did, I think it got like fifties
six thousand likes. Um. That was like my second or
third one, and it was during like the Black Creator's Day,
like it was. It was like a grassroots organized the
Black Creator's Day, and I used it to kind of
tell people like, this pandemic is going to really hit
(10:29):
black folk hard. You need to be careful, you need
to be vigilant. It's gonna hit us most. It kind
of blew up because you know, it was a Creator's Day. Um.
And then another one kind of blew up. That was
about disability and Loompa's and the Holocaust because they couldn't
find a lot of little people actors for Charlie and
(10:49):
the Chocolate Factory and that's because disabled people were killed
first during the Holocaust. And that like got like four
million views and it wasn't even something that was all
that involved. But I was just like getting context is
something somebody said. One of the things that comes with
this kind of visibility on social media is not necessarily backlash,
but cruelty harassment. How do you deal with the inevitable
(11:13):
trolling when you are just doing your own work and
minding your own business. I know this is stereotypical, but
I'm an aries, so I feel like I'm already to
fight some people, and like, I'll start, I'll make an
entire video response to somebody, then be like, you know what,
probably not the time, probably at the best use of
my energy. Um, And so I'll actually either living in
(11:34):
the drafts are just deleted entirely. But there are some
things where I'm like, I can't let this slide. Um.
I've had people send me death threats over getting my
groceries delivered because I was an enemy of the working class.
Um oh yeah, like literally two months before the pandemic
to when which everybody's getting their groceries. So, so don't
let people do their jobs that they get paid for. Well,
(11:57):
the thing is, the delivery person left my groceries in
the lobby of my building, and I had asked him
to come up because I can't physically carry then that's
why I get them delivered. And he was like, oh,
I'm parked in the fire to lane and I was like,
I could see where he was parked. I was like,
you're not um, and so, you know, I just asked him,
can you please bring it up? But if this is
something that happens to disabled people all the time, so
I tweeted about it. So I was like, disabled people,
(12:18):
you've probably dealt with this all the time. And like
the dirt bag Left of the Internet really just went
asking me, was like your enemy of the working class,
You're just lazy. And then literally two months later, nobody
could get to the grocery store because of pandemic and
everybody was getting the grocery sal word. So and I
got a couple of death threats telling me to off
(12:39):
myself or things like that. Yeah, I've had a tussela
or two with the dirt Bag Left and um, they
can be fairly relentless, especially because they feel like they're
being righteous. They have no boundaries and no limits. Does
it ever make you want to stop doing the work
you do or does it just fire you up even more?
(13:03):
I don't know when to stop Himtimes I get really
fired up, I get easily excitable. My primary concern is
like the disability community, because I don't know if I'm
getting this as somebody who's in public. I know the
other disabled people are getting it as well, in like
big ways and small and so I kind of want
to address like the sentiment behind the behavior. But sometimes
(13:23):
I'm like, this is exhausting, this is terrifying. My mom
is like, can you get somebody to read your notifications
for you? Because I don't want you absorbing all that yourself.
I'm like, well, no, I have to be able to
have the flexibility to respond. So it makes me want
to do more, but also at the same time, I'm
not somebody who recognizes my own boundaries in some ways.
(13:44):
One of the things I've often thought is that if
black women, people with disabilities, queer people, trans people, really
anyone in a marginalized body, if we weren't spending so
much of our energy fighting for our lot, wives are
advocating for our communities, etcetera, like we would probably either
be president or like making our own little rocket chips
(14:07):
to travel around the universe. What would you be doing
if you did not have to spend so much of
your energy as an activist. I would be writing and
acting and creating. It's in my blood. I'm actually like
one in a long legacy of artists and musicians, and
and I started this work, of course to tell my
(14:28):
story is a disabled black woman, but also to kind
of create the representation that it always yearned for. And
I kind of sidestepped into advocacy because in order to
get through the door, I have to advocate for the
door to be open um. And people don't usually want
to see disabled people, especially disabled people of color, in
those spaces at all. And so I found myself like,
(14:50):
we really need to get more political power, we need
to get more social power. We can create hashtags. And
then I just kind of like sidestepped and was like
and and now this point where well what am I doing? Like,
you know, like all this stuff kind of feels like
it has been for not in a lot of ways.
So why am I not creating? Why am I at writing?
Why am I not doing the things I was always
(15:12):
going to set out to do? So are you going
to make time to do those things? I'm working on it? Yeah?
I mean it's a tough question. It's you know, it's
a simple question, but it's a tough question, and when
I also grapple with for different reasons. But you know,
it's so much harder than you might think to make
(15:32):
that kind of time to just create, because first you
have to have like a clear mind to relax, and
it's hard to relax when you feel like you're constantly
fighting for your life, for the life lives of people
that you care about. It's really challenging. I agree, as
you well know, a lot of people are like, well,
(15:53):
we're wrapping this pandemic up, like we're good to go,
Let's do away with masks, Let's just take away, you know,
sort of all of the accommodations that we have seen
over the past two years. It's time to move forward.
We already knew that people that disabled people were being
left behind, but now it seems like they're being completely abandoned.
(16:15):
How do you deal with this sort of systemic indifference.
It's not that I can understand where they're coming from.
I know what their what their motivation behind this sentiment is,
and that is people who had privileges part to the vandemic,
who didn't have to do so much to survive on
a daily basis. I want to go back to that
(16:35):
time of well, life was easy for me, for everybody else.
Let's just go back to the way things were. UM.
So I can see where they're coming from. I don't
necessarily agree with it, but I can see where that
idea manifests from. Getting back to your question about rage, Like,
I don't know what to do with the rage that
we have seen, all of the death and devastation, have
(16:57):
seen every single institution fail, us have seen one another
as the people that we actually truly are. Because the
people you are in times of good are not exactly
the same people that you are in times of bad.
That kind of gets to the core of who you are.
We've seen exactly who everybody is. And does this go
back to normal? What do you mean? What? What is
(17:18):
that even gonna mean to anybody? Um? And so normal
really is not where people need to be and what
people need to be working towards. We need to be
getting back to new and progression and actually trying to
further things and further goals within this country and amongst
each other as a community. UM. And every single time
people get a chance to advance, they get to where
(17:40):
they want to go. They leave disabled people behind because
they think, well, they weren't you know, really a value
to begin with, or you know, they don't really have
any goals. They just exist over there, when in reality
we as badly as anybody else, probably even more so.
I want to get to our lives, and this idea
that we can get back to normal is keeping us
from that. How do we and again I don't know,
(18:03):
let me be clear, I don't think that marginalized people
need to solve the circumstances of their own oppression. But
at the same time, I'm curious, how do you think
we get to a place where we abandon this idea
of getting back to normal and instead engineer ourselves towards
a new normal. I think people are going to need
to see things completely collapse, because I think what we're watching,
(18:27):
what we're watching right now is things on the verge,
and so we we in our minds think that, oh,
this is still functioning. If we just make it a
little bit easier, it'll get back to normal, and then
of a little bit of breathing room, everything's gonna get
back to where it was. That's not the case. They
are inches if not centimeters away from collapsing entirely, and
people want to ignore it because it doesn't affect their
(18:49):
daily lives. That people need to see that it does
and it will. Every single asset to our life is
on very very much so thin ice, and people are
tap dancing on top of it. So you either need
to watch a collapse or you need to divert course
because the way we're coasting is not the way it's
going to be and not the way we're going to
(19:10):
move forward. Um. And so people are very much a
visual are very recepted to communication messages visually, Like people
don't believe things that they don't see, despite are a
lot of our nation believing in a lot of things
they don't see. But anyways, and we were very visual
in the way we need to see things happen. And
so I think people need to see what the collapse
looks like, see what the future could look like, and
(19:33):
then try to actually pave away that is inclusive of everybody. Now,
what kinds of policies would contribute to that inclusion for
everyone and sort of a better world? I don't think
a perfect world exists, but what kinds of policies could
make our world better, especially for people with disabilities. Well,
(19:53):
the very first thing we need to do so are
our country actually legislates disabled people into poverty. UM. If
you want to have access healthcare, if you want to
have access to services, a lot of them are income based.
I mean, if you make more than two dollars to
your name, ever, like on a monthly basis, then you
don't qualify for Social Security income, you don't qualify for
(20:14):
certain Medicaid and Medicare. You are literally legislated into poverty.
So people spend all of their money trying to get
these services and then only get like a payout of
a hundred eight hundred fifty dollars a month at most.
So we need to do away with income limits for
disability services, healthcare, and accommodations. That's the first thing that
needs to go. UM, and then you can't get married
(20:36):
because of that. And also a lot of families, parents,
spouses cannot say for retirement because if you combine the assets,
it's too much money for that one person with a
disability to actually have access to those services. Another thing
that we need to address is the minimum wage and
wage increases for direct support workers. Direct support workers are
the people that help disabled people on a daily basis
(20:59):
UM and they are under staff right now. It is
at a critical point badly. And they make on average,
I think in my state of Pennsylvania about thirteen an
hour from one some of the most involved jobs in
our country. They need to be doing more to increase
those wages. And a lot of those, UM direct support
workers are queer people or women of color. So you
(21:20):
know you're you're watching all these systems harm multiple people
just because it's centered on disability. So those are the
two main things that need to happen. We also need
to get private equity out of disability services. There's a
there's a horrific reporting out of BuzzFeed News talking about
how private equity is basically costing disabled people our lives
(21:42):
and institutions in congregate care settings. That needs to end.
We need to actually create services where disabled people can
live in the community. We need community based services so
people can live in community with their families and friends
and have a support system. UM. So those are the
main three ones that I can think of. Right when
I first learned about the two thousand dollar total limit,
(22:05):
I was shocked because that's really just a systemic way
of keeping millions of people in really abject poverty, because
to have less than two thousand dollars to your name
truly means that you have no resources should an emergency come,
and to keep you from something like marriage, if you
(22:27):
should so choose as to marry someone, that means, like
what we're telling the disability community is that you don't
get to live full lives, You don't get to have
nice things. It seems like a punishment. Do you think
it's you know, we all we tend to like, not
me necessarily, but people tend to believe that. Of course,
(22:48):
the Democrats are sort of doing better, but I know
that you can't stand Biden his tweets. Is the Biden
administration doing anything in terms of disability advocacy and creating change.
I think what most disabled people are focused on is
kind of the COVID related policies as well as the
way that everything intersects with disability. So when we think
(23:09):
about disability, we think about it along its own path right,
its own access. But disability is the most diverse marginalized
group in the entire world. Um And when you think
about the fact that racism is inherently disabling when transphobia
is inherently disabling, when queer phobia is inherently disabling, it
paints a very stark picture as to who is actually
(23:31):
being left behind. And so when we talk about loan forgiveness,
like disabled people, some disabled people got their loans forgiven,
but making sure that that is equitable for everybody that
needs to happen, you know, even Rob Wade, you know,
disabled people are amongst the highest to be sexually assaulted
in this country, where we are way more likely to
(23:52):
be assaulted. And yet most of the conversations around reproductive
health equity do not even concern themselves with us because
you did not think of us disabilian sex in the
same way. So it's kind of those types of things
I just dislike very much so the idea that politicians,
especially left leaning politicians UM, are tweeting like the rest
(24:15):
of us, Like, I find that to be very insulting,
you know, like we should be forgiving loans. You forgive
loans like I'm sitting in my living room working for
my laptop. You you're the over offers do something, UM.
And I think also so many of them are so
breathtakingly wealthy, right you have three million dollars. What are
(24:36):
you talking about? Like, we need to get universal healthcare
going xo XO Biden, Like do something, says the motherfucker
who has universal healthcare. It's outrageous. It is outrageous. Yeah,
that's the thing that bothers you most. Yeah, you know,
it's interesting to see all of the intersections. You know,
(24:57):
as a fat person, I have long believed the fat
community and the disability community have far more in common
than not because the world is very inaccessible to fat people,
like that, you know, seating, the amount of walking required
in various places. Can you fit in a ride at
an amusement park? From entertainment to just like necessary things.
(25:21):
Doctors look at you and and just you know, you
could have stepped throout and they're like, lose weight. And
so how can the disability and fat communities work together
more effectively? Because I do think that we deal with similar,
though not identical struggles. And you know, many hands make
light work. Yeah. So one of the things, like I
(25:43):
really grapple with the idea of of fatness itself being
a disability, but under the social model of disability, fatness
is a disability because we purposely disabled fat people, if
that makes sense. UM, Like the social model of disability
says that your diagnosis is one thing, that your body
as it functions in the world is one thing, but
we actively make things harder for you because you are
(26:06):
you do have this type of body. And so in
terms of like the smaller seats, the lengths that we
have to go through the walk, and doctors not believing us,
we actively disable fat people. I think what needs to
happen is more people need to recognize that fat phobia
is like a projection of able is UM. A lot
of the ways in which we talk about fat phobia
(26:26):
is very much in line with able ism in the
terms of the way that people police fat bodies is
very similar. UM. They're like, well, you're you know, you're
gonna have diabetes. If you keep it going along this way,
you're gonna keep having all these diagnoses and all these issues.
Those are all disabilities UM, and so they're really angry
with that people for quote unquote choosing to be disabled
(26:47):
UM in their eye. And I think that a sense
of body neutrality is where we need to really start
heading towards UM, as well as making sure that we
fight for representation in medicine, educating physicians and doctors and
all of these people. We also need to be making
spaces accessible for all There's somebody that UM accessibility punishes
(27:11):
UM accessibilities for everybody. If we had more of that mindset,
things would be better for everybody, including fat people and
disabled people. UM. So creating a mindset of accessibility is
also where we need to go. That's something I very
much want to see and I and I agree like
in terms of you know, is fatness and disability. I
don't inherently think so, but I do think it's adjacent.
(27:33):
I do think there's a common cause there. And body
neutrality I do think is one of the ways forward
because it allows us to just acknowledge that we all
live in bodies. Those bodies have needs, and as a society,
let's start to figure out how to address those needs.
And when you say it out loud, it seems like,
oh so simple, but when you look at the world,
(27:55):
it just seems like, wow, we are literally miles away
from anything even close to being equitable. I think there's
also this desire to treat all bodies the same in
order to have body neutrality, and that's not the case.
I could recognize the ways in which my body is
different and has different needs, that has different accessibilities, but
(28:15):
my body is gonna be there, like regardless, my body
is going to be there. And we can apply the
exact same logic to fatness. You're not punishing yourself by
being fat. You're not punishing yourself by not get anything.
They're not punishing yourself by not fitting into all of
these things. You are being punished and you are going
to take your body with you, so you might as
well feel that it is yours and that you have
(28:36):
possession over it and you have autonomy over it, even
as hard as that it is these days, do you
feel most days that you have autonomy over your body?
I could barely got my legs to do what I
want on a daily basis. Um, I have auton of
you over my body, but my body talks back. UM.
I do, to a certain extent, feel autonomy over my body,
(28:59):
and I've felt it more are so during the pandemic
because I don't have I don't have to be in
public around non disabled people who were grabbing at me
and ask me questions and I'm trying to hug me
and like pick me up or I don't know, but
I feel way more autonomy being alone than I do
in public um. And I feel like more myself And
I'm very much so an introvert because of the ways
(29:21):
I've been socialized with my disability. I know that you
recently quit your job as a communications manager at a
disability nonprofit. Why did you quit your job and what
does the future look like for you professionally? So I
I quit my job. I knew after spending months reading
(29:44):
over medical ration guidelines um and like begging people to
take this seriously and begging people to take the disability
community seriously. Um, And we got to the pandemic Like
it was just breaking my heart every single day two watches,
the disability community was disregarded, and even to this day
it just it hurts a lot too to watches people
(30:04):
just be like, well, I just want to get back
to normal because I have a life to live um
and automatically saying the quiet part out loud um. And
So I knew, like shortly after that, I was like,
I can't keep doing this. It felt like drinking through
a fire hose for two years because disability advocacy had
so many ripple effects as oppertaining to this pandemic. So
I was like, I have to, I have to take
care of myself. UM, and then I do. The second
(30:26):
time that happened was like I read a book for
pleasure and cried. And it wasn't even a sad book.
It was just like I cried because I hadn't had
the focus to enjoy something and I couldn't figure out
how to enjoy things that I had enjoyed for years
and it was just burnt out. And so what I
want to do with this free time is like get
back to the creating that I always had wanted to do,
(30:46):
and get back to the projects in the artistry and
just having fun with the work that I do. I
can't keep pouring from an empty vessel. Um. As they
say it's there's nothing left. It seems like it's a
great time to refill that vessel. So you've mentioned creative
projects and acting, and I would love to know, like
what's your dream project and role? So my dream project,
(31:10):
I've been working on it for like three or four years. UM.
I am working on a series of my dating life
as a disabled Black woman. UM. And it's it's hilarious
because nobody knows what to do with you when you're
doating well. Disabled and black, like they know, they know
the perceptions of being disabled, they know the perception of
being black, they don't know like the combination. So I'm
(31:31):
working on a comedy series, and I'd love to play
myself wout the My goal is to kind of show
more disabled black folks in these situations in like the
light of of day and those types of things. I'm
also working on my memo if I were you, I'd
kill myself and other disabled compliments, So I'm working on
(31:51):
that too. You know, I know that comedy is a
big part of the work that you do, both as
an activist and also just in your creative work. When
did you first know you were funny? Oh, my dad
and I used to practice. So I when I was
like nine or eight or nine years old. This girl
in my like third grade classic at bleeding and so
(32:14):
my dad and I would like run drills of comebacks
and we would go over them and over and over them,
and then like I would just install her every single
time she's trying to come for me, so um, and
then I'd like we practice that growing up at the
dinner table throughout my entire childhood, so I knew was
I knew I was witty. I didn't really realize that
(32:35):
was funny until you know, I started tweeting and getting
more in public. And does the affirmation that comes from
people engaging with you on social media? I mean, when
Lord knows, we know there's a lot of negative stuff,
but there is a lot of affirmation. Does that encourage
you to continue with the work that you do? And
that doesn't help as a laboratory for trying out jokes.
(32:55):
I feel like when it comes to being disabled, the
aff mes usually rely on who it comes from. Um,
when it comes from non disabled people who are just like,
you're so inspiring, I love you and like because because
that's the stereotype they expected me, Like, I don't. I
have no desire to plead to that. But when disabled
people are like, oh my goodness, I finally feel seen.
(33:15):
I get this, Like this is funny, this is funny
to me, Like this is a disability joke. I love that.
That's the type of stuff I love because I don't.
I have no desire to make the world easier for
non disabled people, like by default, yeah, of course, but
I just want more disabled people to feel seen and understood.
So like when it comes from them, I'm like, absolutely,
I love this. And for you, what makes a joke
(33:36):
a good joke whether or non disabled people feel uncomfortable? Um, wow,
I love it. You know. One of the things I've
learned over the years is like that I'm I'm still learning,
is like how to sit with discomfort and instead of
like pushing it away or being defensive and so, how
(34:00):
have you learned to be comfortable with discomfort? I've learned
when to be quiet. I think one of the greatest
skills in any sort of advocacy or just trying to
understand other people is just to be quiet. Um. I
feel like when on social media there's this push to
just be loud and no matter what you say, you
you'll you can apologize later. Um. There's certain things, well,
(34:21):
I'm just like, I don't need to talk on this,
UM speak on it. I don't need because I don't know.
I don't know well enough to actually say anything worthwhile,
um without actually harmoring somebody, because I don't know enough
the intricacies to to navigate that space. And so I
take more time to listen and try to sit with
you know, Okay, I don't know much about the Jewish faith.
(34:41):
I'm gonna sit here and listen. Like people will see
me from reposting stuff, but they'll never see me talking
about stuff I don't know about. Yeah, and I know
when to be quiet. That's my greatest gift is silence,
you know, I agree, Um, And the older I get,
the more I understand when to speak and when to
listen and sort of figure out where my lane is
(35:02):
and how to stay the funk in it exactly, Amani.
This has been an amazing conversation, And thank you for
joining me on my little podcast. And I think you're
fucking hilarious. Thank you. I had so much fun talking
to you. Thank you so much. You can keep up
with me and the podcast on social media on Twitter
at our Gay and Instagram at Roxane Gay seven four.
(35:25):
Our email addresses Roxanne Gay Agenda at gmail dot com,
and we would love to hear from you from Luminary.
The Rock sand Gay Agenda is produced by Curtis Fox.
Our researcher is Yesaga Moreno, and production support is provided
by Caitlin Adams and Meg Pillow. I am Roxanne Gay,
your favorite that feminist. Thank you for listening,
Sometimes I'm listening to music and I stopped vibing with
the beat, and I really stop and listen to the lyrics.
And when it comes to hip hop, I am always
delighted by the word play. Right now, I have met
the Stallion's Plan B on repeat. It's a work of art. Honestly,
it's lyrical, it's angry, it's clever. I mean, listen to this.
(00:21):
I should have listened to my first mind and told
your as no the first time, told your as no
the first time. Try to spare this nigga feelings. Now
he thinks he hurt in mind, you cheap, and I'd
be at work while you sleep. My pussy is the
most expensive meal you'll ever eat. Fuck you still can't
believe I used to trust you. The only accolade you
(00:41):
ever made is that I fucked you. You a bit.
If you get the chance, I bet you snitch, You'll
never get a chance to tell me come and pack
my ship. That's just poetry. It is what it is.
And so if you're looking for a great song to
rock out through this weekend, I highly recommend Plan B.
It's just a great fucking song from Luminary. This is
(01:04):
the Roxanne Gay Agenda, The Bad Feminist Podcast of Your Dreams.
I am Roxanne Gay and your favorite bad feminist. On
the roxand Gay Agenda, I talk about something that's on
my mind, and then I talked with someone interesting to
find out what's on theirs on this week's agenda are
inalienable rights. Unfortunately, a lot of us have been reminded
(01:26):
this week that many of the rights we would like
to take for granted we cannot. As most of you
probably know, a Supreme Court decision overturning Roe v. Wade
was recently leaked, and reactions, as you might imagine, have
been incredibly intense because people's lives are at stake with
this decision. One of the things that this has reminded
(01:48):
us is that so many of the rights that marginalized
people would like to take for granted, we simply cannot.
Those rights are contingent upon political whims, and depending on
who's in power, we have more rights or fewer rights.
And that's no way to live. Wondering from one day
to the next, if you will have bodily autonomy, if
(02:09):
you will be able to marry the person of your choosing,
if you will be able to have healthcare, especially gender
affirming healthcare. And so right now we are in a
place where we must contend with this reality and figure
out how do we move forward, how do we fight,
how do we rage against this political machine? And I
don't really have a lot of answers, but today's guest
(02:32):
has a lot of insight into what activism can look
like and how we might use our voices to create change.
If you're on TikTok a lot, as most of us are,
including myself, you might have come across the Monty Barberin
here she is interacting with tape of a televangelist. So
I do not call in sick, I don't call in gay. Hi. Yes,
(02:55):
I would like to call him crippled in all, And
here she is making a trenchant observation about zoom. Probably
the most dystopian thing about this pandemic is how many
times I've heard for all is Happy over a distorted
(03:17):
Zoom call. Her work extends well beyond social media and
Montie Barbara is a disability activist, a writer, a TikTok
phenomenon where she has over four hundred thousand followers. Her
work appears regularly in Forbes and can also be found
in rewire healthline, Bitch and more. She was diagnosed with
(03:38):
cerebral palsy when she was too and often talks about
navigating the world as a disabled black woman. She is brilliant, funny, exuberant,
and she joins me today to talk about her work
and activism and Monty Barberine. Welcome to the Roxanne Gay Agenda.
Thank you for having me. I appreciate it. I understand
that you got your first tattoo at the age of nineteen.
(04:00):
Why was that? I badly one of my own tattoo.
For a very long time, I always loved the idea
of body art um and it really spoke to me
as a disabled person because my entire life I've been
yanked and pulled and told your body isn't function in
this way, and here's what we're gonna do to it,
and here's the surgery you're gonna have. And I really
wanted to have something on my body that was just mine,
(04:20):
that wasn't a scar or a bruise or a mark
or something. And so I got my first stattoo a
nineteen It's heart gm D on my finger because my
mom uses sign all my lunches, my lunch notes to
me heart God, mom, and dad, and then you shortened
it to heart G M D. So that was my
first tattoo. I too, got my first tattoo at nineteen,
(04:41):
and for many similar reasons. You know, I was fat,
and I didn't feel like I had any control over
my body, and in truth, I didn't a lot of
people had control over my body. So I felt like
I had so few options to make choices about my
body that were entirely mine. Tattoos were the very first
(05:01):
time where I felt like, this is a choice I'm
making for myself. And I know that you described getting
your first tattoo as an active body reclamation, and I
found that to be much the same. And I also
found that you can't get just one. And so have
you continued getting tattoos? Yes? Um. The count that my
dad knows that I have like seven, Um, the reality
(05:23):
is I have like fourteen. Um. So every single time
he sees me, he literally points to one's like, is
that new? I'm like, no, of course not. But I
was like fourteen. Now, girl, I do the same thing.
And what's funny is that I'm so I have had
these tattoos for twenty eight years, and every time my
mom sees me, which is often, she asks real brand
new about it, and she's like, well, wok son, what
(05:46):
is that on your Like what do you think it is?
You know what it is? Stop playing games with me?
And sometimes they let Ashen just do the work for
me because you get all blended and they can't really
see it. But if you're more moisturized, they can see
all of it. I love it. In praise of action
est tattoo camouflage exactly now. I know, especially now, your
(06:10):
activism has been incredibly necessary because the pandemic has not
been the same for people with disabilities. What have the
past two years been like? And how do you manage
your rage while holding space for joy? Let me let
me end with the rage part because I don't even
know what to do with that at this point. Um,
but the pandemic really kind of shut everything down for
(06:33):
disabled people. And while a lot of things became more
accessible for no disabled people, I mean things literally just
stopped for disabled people. UM, services stop, certain day programs stopped. Um,
there's now a direct support workers shortage. People are just
not getting back to their programs that they had parts
to the pandemic. Special education had no idea what to do,
(06:53):
had no idea how to operate remotely, so children are
missing their educational goals or are like two years behind now.
Certain people with sensory disabilities to utilize things like tachal
as l communicate because their death bline could no longer
do that, so they couldn't get groceries, couldn't get emergency
care or care at all. Um, we can no longer
(07:14):
have visitors with us at the hospital at that started
a pandemic, so people couldn't have their own advocates or
family members. Um. And this is all against the backdrop
of like, hey, we're finally going to do remote work,
which is something that disabled people have been begging for,
or we're going to finally have remote medicine, which again
is another thing disabled people have been begging for. It's
been really stressful. And then on top of that, we
(07:35):
had medical rational guidelines It said who hears who's gonna
get care if we're at capacity, And it was basically
just stereotypes of disability because all you know, who's going
to be a waste of resources and disabled people would
always come out at the bottom of those types of things. So,
how do you navigate a world where you are consistently
told you go last if you get consideration at all?
(07:58):
And what kinds of strategies can you even use to
to be heard and to be seen? Well, a big
bustling for us with social media and disabled that have
been organizing on social media for years. One of the
most prominent campaigns was Scrypt the Vote, which was started
by Greg Barton, Andrew poll Rang and Alice Wong and
basically got disabled people involved in politics through the social
(08:22):
media lens. And because of that, we are we a
lot of disabled people already had a foothold in like
policymaking and things like that through that public discourse. UM.
And so whenever people discount keyboard Warriors and you know
it works, really know disabled, that's that's all we had. UM.
And so we've been utilizing social media, utilizing earned earned
media from social media in order to get our view
(08:44):
points out of there. When did you come to TikTok
and what have you found to be most useful about
that particular medium? So I turned thirty during the pandemic,
like two weeks into quarantine, and I was like in
my bad crying and the family was like, why did
you find something to do? Find something to look forward to?
(09:04):
And I was like, fine, I'll finally get on TikTok
because I was one of those belligerent millennials who is,
oh my god, it's just Vine, but just longer. And
I was like, I'm too good for this. But I
really wanted to get on TikTok because I saw it
as a platform that couldn't connect people face to face
during a time in which that was not possible. Um
(09:24):
and fine, excuse me. In TikTok very closely replicates like
FaceTime and the way that we communicate digitally now, so
it made a lot of sense as well as there's
an entirely different generation of disabled folks on TikTok than
there are on Instagram or Twitter or even Tumbler. Like
there social media platforms kind of follow generations, um in
different demographics. So I figured if I wanted to expand
(09:47):
my disability advocacy, it had to be on TikTok, and
then I could be a little bit more fun, a
little bit more personal person on that platform. Was there
a specific TikTok that really blew up and got people
starting to really pay attention to you because it is
one of the things that I have found on TikTok
is that it's sucking overwhelming. Yeah, I love it, but
there are so many creators and the algorithm will serve
(10:08):
up what it wants to serve up. So, like, what
really helped you to break through? Well, the first big
tiklock that I did, I think it got like fifties
six thousand likes. Um. That was like my second or
third one, and it was during like the Black Creator's Day,
like it was. It was like a grassroots organized the
Black Creator's Day, and I used it to kind of
tell people like, this pandemic is going to really hit
(10:29):
black folk hard. You need to be careful, you need
to be vigilant. It's gonna hit us most. It kind
of blew up because you know, it was a Creator's Day. Um.
And then another one kind of blew up. That was
about disability and Loompa's and the Holocaust because they couldn't
find a lot of little people actors for Charlie and
(10:49):
the Chocolate Factory and that's because disabled people were killed
first during the Holocaust. And that like got like four
million views and it wasn't even something that was all
that involved. But I was just like getting context is
something somebody said. One of the things that comes with
this kind of visibility on social media is not necessarily backlash,
but cruelty harassment. How do you deal with the inevitable
(11:13):
trolling when you are just doing your own work and
minding your own business. I know this is stereotypical, but
I'm an aries, so I feel like I'm already to
fight some people, and like, I'll start, I'll make an
entire video response to somebody, then be like, you know what,
probably not the time, probably at the best use of
my energy. Um, And so I'll actually either living in
(11:34):
the drafts are just deleted entirely. But there are some
things where I'm like, I can't let this slide. Um.
I've had people send me death threats over getting my
groceries delivered because I was an enemy of the working class.
Um oh yeah, like literally two months before the pandemic
to when which everybody's getting their groceries. So, so don't
let people do their jobs that they get paid for. Well,
(11:57):
the thing is, the delivery person left my groceries in
the lobby of my building, and I had asked him
to come up because I can't physically carry then that's
why I get them delivered. And he was like, oh,
I'm parked in the fire to lane and I was like,
I could see where he was parked. I was like,
you're not um, and so, you know, I just asked him,
can you please bring it up? But if this is
something that happens to disabled people all the time, so
I tweeted about it. So I was like, disabled people,
(12:18):
you've probably dealt with this all the time. And like
the dirt bag Left of the Internet really just went
asking me, was like your enemy of the working class,
You're just lazy. And then literally two months later, nobody
could get to the grocery store because of pandemic and
everybody was getting the grocery sal word. So and I
got a couple of death threats telling me to off
(12:39):
myself or things like that. Yeah, I've had a tussela
or two with the dirt Bag Left and um, they
can be fairly relentless, especially because they feel like they're
being righteous. They have no boundaries and no limits. Does
it ever make you want to stop doing the work
you do or does it just fire you up even more?
(13:03):
I don't know when to stop Himtimes I get really
fired up, I get easily excitable. My primary concern is
like the disability community, because I don't know if I'm
getting this as somebody who's in public. I know the
other disabled people are getting it as well, in like
big ways and small and so I kind of want
to address like the sentiment behind the behavior. But sometimes
(13:23):
I'm like, this is exhausting, this is terrifying. My mom
is like, can you get somebody to read your notifications
for you? Because I don't want you absorbing all that yourself.
I'm like, well, no, I have to be able to
have the flexibility to respond. So it makes me want
to do more, but also at the same time, I'm
not somebody who recognizes my own boundaries in some ways.
(13:44):
One of the things I've often thought is that if
black women, people with disabilities, queer people, trans people, really
anyone in a marginalized body, if we weren't spending so
much of our energy fighting for our lot, wives are
advocating for our communities, etcetera, like we would probably either
be president or like making our own little rocket chips
(14:07):
to travel around the universe. What would you be doing
if you did not have to spend so much of
your energy as an activist. I would be writing and
acting and creating. It's in my blood. I'm actually like
one in a long legacy of artists and musicians, and
and I started this work, of course to tell my
(14:28):
story is a disabled black woman, but also to kind
of create the representation that it always yearned for. And
I kind of sidestepped into advocacy because in order to
get through the door, I have to advocate for the
door to be open um. And people don't usually want
to see disabled people, especially disabled people of color, in
those spaces at all. And so I found myself like,
(14:50):
we really need to get more political power, we need
to get more social power. We can create hashtags. And
then I just kind of like sidestepped and was like
and and now this point where well what am I doing? Like,
you know, like all this stuff kind of feels like
it has been for not in a lot of ways.
So why am I not creating? Why am I at writing?
Why am I not doing the things I was always
(15:12):
going to set out to do? So are you going
to make time to do those things? I'm working on it? Yeah?
I mean it's a tough question. It's you know, it's
a simple question, but it's a tough question, and when
I also grapple with for different reasons. But you know,
it's so much harder than you might think to make
(15:32):
that kind of time to just create, because first you
have to have like a clear mind to relax, and
it's hard to relax when you feel like you're constantly
fighting for your life, for the life lives of people
that you care about. It's really challenging. I agree, as
you well know, a lot of people are like, well,
(15:53):
we're wrapping this pandemic up, like we're good to go,
Let's do away with masks, Let's just take away, you know,
sort of all of the accommodations that we have seen
over the past two years. It's time to move forward.
We already knew that people that disabled people were being
left behind, but now it seems like they're being completely abandoned.
(16:15):
How do you deal with this sort of systemic indifference.
It's not that I can understand where they're coming from.
I know what their what their motivation behind this sentiment is,
and that is people who had privileges part to the vandemic,
who didn't have to do so much to survive on
a daily basis. I want to go back to that
(16:35):
time of well, life was easy for me, for everybody else.
Let's just go back to the way things were. UM.
So I can see where they're coming from. I don't
necessarily agree with it, but I can see where that
idea manifests from. Getting back to your question about rage, Like,
I don't know what to do with the rage that
we have seen, all of the death and devastation, have
(16:57):
seen every single institution fail, us have seen one another
as the people that we actually truly are. Because the
people you are in times of good are not exactly
the same people that you are in times of bad.
That kind of gets to the core of who you are.
We've seen exactly who everybody is. And does this go
back to normal? What do you mean? What? What is
(17:18):
that even gonna mean to anybody? Um? And so normal
really is not where people need to be and what
people need to be working towards. We need to be
getting back to new and progression and actually trying to
further things and further goals within this country and amongst
each other as a community. UM. And every single time
people get a chance to advance, they get to where
(17:40):
they want to go. They leave disabled people behind because
they think, well, they weren't you know, really a value
to begin with, or you know, they don't really have
any goals. They just exist over there, when in reality
we as badly as anybody else, probably even more so.
I want to get to our lives, and this idea
that we can get back to normal is keeping us
from that. How do we and again I don't know,
(18:03):
let me be clear, I don't think that marginalized people
need to solve the circumstances of their own oppression. But
at the same time, I'm curious, how do you think
we get to a place where we abandon this idea
of getting back to normal and instead engineer ourselves towards
a new normal. I think people are going to need
to see things completely collapse, because I think what we're watching,
(18:27):
what we're watching right now is things on the verge,
and so we we in our minds think that, oh,
this is still functioning. If we just make it a
little bit easier, it'll get back to normal, and then
of a little bit of breathing room, everything's gonna get
back to where it was. That's not the case. They
are inches if not centimeters away from collapsing entirely, and
people want to ignore it because it doesn't affect their
(18:49):
daily lives. That people need to see that it does
and it will. Every single asset to our life is
on very very much so thin ice, and people are
tap dancing on top of it. So you either need
to watch a collapse or you need to divert course
because the way we're coasting is not the way it's
going to be and not the way we're going to
(19:10):
move forward. Um. And so people are very much a
visual are very recepted to communication messages visually, Like people
don't believe things that they don't see, despite are a
lot of our nation believing in a lot of things
they don't see. But anyways, and we were very visual
in the way we need to see things happen. And
so I think people need to see what the collapse
looks like, see what the future could look like, and
(19:33):
then try to actually pave away that is inclusive of everybody. Now,
what kinds of policies would contribute to that inclusion for
everyone and sort of a better world? I don't think
a perfect world exists, but what kinds of policies could
make our world better, especially for people with disabilities. Well,
(19:53):
the very first thing we need to do so are
our country actually legislates disabled people into poverty. UM. If
you want to have access healthcare, if you want to
have access to services, a lot of them are income based.
I mean, if you make more than two dollars to
your name, ever, like on a monthly basis, then you
don't qualify for Social Security income, you don't qualify for
(20:14):
certain Medicaid and Medicare. You are literally legislated into poverty.
So people spend all of their money trying to get
these services and then only get like a payout of
a hundred eight hundred fifty dollars a month at most.
So we need to do away with income limits for
disability services, healthcare, and accommodations. That's the first thing that
needs to go. UM, and then you can't get married
(20:36):
because of that. And also a lot of families, parents,
spouses cannot say for retirement because if you combine the assets,
it's too much money for that one person with a
disability to actually have access to those services. Another thing
that we need to address is the minimum wage and
wage increases for direct support workers. Direct support workers are
the people that help disabled people on a daily basis
(20:59):
UM and they are under staff right now. It is
at a critical point badly. And they make on average,
I think in my state of Pennsylvania about thirteen an
hour from one some of the most involved jobs in
our country. They need to be doing more to increase
those wages. And a lot of those, UM direct support
workers are queer people or women of color. So you
(21:20):
know you're you're watching all these systems harm multiple people
just because it's centered on disability. So those are the
two main things that need to happen. We also need
to get private equity out of disability services. There's a
there's a horrific reporting out of BuzzFeed News talking about
how private equity is basically costing disabled people our lives
(21:42):
and institutions in congregate care settings. That needs to end.
We need to actually create services where disabled people can
live in the community. We need community based services so
people can live in community with their families and friends
and have a support system. UM. So those are the
main three ones that I can think of. Right when
I first learned about the two thousand dollar total limit,
(22:05):
I was shocked because that's really just a systemic way
of keeping millions of people in really abject poverty, because
to have less than two thousand dollars to your name
truly means that you have no resources should an emergency come,
and to keep you from something like marriage, if you
(22:27):
should so choose as to marry someone, that means, like
what we're telling the disability community is that you don't
get to live full lives, You don't get to have
nice things. It seems like a punishment. Do you think
it's you know, we all we tend to like, not
me necessarily, but people tend to believe that. Of course,
(22:48):
the Democrats are sort of doing better, but I know
that you can't stand Biden his tweets. Is the Biden
administration doing anything in terms of disability advocacy and creating change.
I think what most disabled people are focused on is
kind of the COVID related policies as well as the
way that everything intersects with disability. So when we think
(23:09):
about disability, we think about it along its own path right,
its own access. But disability is the most diverse marginalized
group in the entire world. Um And when you think
about the fact that racism is inherently disabling when transphobia
is inherently disabling, when queer phobia is inherently disabling, it
paints a very stark picture as to who is actually
(23:31):
being left behind. And so when we talk about loan forgiveness,
like disabled people, some disabled people got their loans forgiven,
but making sure that that is equitable for everybody that
needs to happen, you know, even Rob Wade, you know,
disabled people are amongst the highest to be sexually assaulted
in this country, where we are way more likely to
(23:52):
be assaulted. And yet most of the conversations around reproductive
health equity do not even concern themselves with us because
you did not think of us disabilian sex in the
same way. So it's kind of those types of things
I just dislike very much so the idea that politicians,
especially left leaning politicians UM, are tweeting like the rest
(24:15):
of us, Like, I find that to be very insulting,
you know, like we should be forgiving loans. You forgive
loans like I'm sitting in my living room working for
my laptop. You you're the over offers do something, UM.
And I think also so many of them are so
breathtakingly wealthy, right you have three million dollars. What are
(24:36):
you talking about? Like, we need to get universal healthcare
going xo XO Biden, Like do something, says the motherfucker
who has universal healthcare. It's outrageous. It is outrageous. Yeah,
that's the thing that bothers you most. Yeah, you know,
it's interesting to see all of the intersections. You know,
(24:57):
as a fat person, I have long believed the fat
community and the disability community have far more in common
than not because the world is very inaccessible to fat people,
like that, you know, seating, the amount of walking required
in various places. Can you fit in a ride at
an amusement park? From entertainment to just like necessary things.
(25:21):
Doctors look at you and and just you know, you
could have stepped throout and they're like, lose weight. And
so how can the disability and fat communities work together
more effectively? Because I do think that we deal with similar,
though not identical struggles. And you know, many hands make
light work. Yeah. So one of the things, like I
(25:43):
really grapple with the idea of of fatness itself being
a disability, but under the social model of disability, fatness
is a disability because we purposely disabled fat people, if
that makes sense. UM, Like the social model of disability
says that your diagnosis is one thing, that your body
as it functions in the world is one thing, but
we actively make things harder for you because you are
(26:06):
you do have this type of body. And so in
terms of like the smaller seats, the lengths that we
have to go through the walk, and doctors not believing us,
we actively disable fat people. I think what needs to
happen is more people need to recognize that fat phobia
is like a projection of able is UM. A lot
of the ways in which we talk about fat phobia
(26:26):
is very much in line with able ism in the
terms of the way that people police fat bodies is
very similar. UM. They're like, well, you're you know, you're
gonna have diabetes. If you keep it going along this way,
you're gonna keep having all these diagnoses and all these issues.
Those are all disabilities UM, and so they're really angry
with that people for quote unquote choosing to be disabled
(26:47):
UM in their eye. And I think that a sense
of body neutrality is where we need to really start
heading towards UM, as well as making sure that we
fight for representation in medicine, educating physicians and doctors and
all of these people. We also need to be making
spaces accessible for all There's somebody that UM accessibility punishes
(27:11):
UM accessibilities for everybody. If we had more of that mindset,
things would be better for everybody, including fat people and
disabled people. UM. So creating a mindset of accessibility is
also where we need to go. That's something I very
much want to see and I and I agree like
in terms of you know, is fatness and disability. I
don't inherently think so, but I do think it's adjacent.
(27:33):
I do think there's a common cause there. And body
neutrality I do think is one of the ways forward
because it allows us to just acknowledge that we all
live in bodies. Those bodies have needs, and as a society,
let's start to figure out how to address those needs.
And when you say it out loud, it seems like,
oh so simple, but when you look at the world,
(27:55):
it just seems like, wow, we are literally miles away
from anything even close to being equitable. I think there's
also this desire to treat all bodies the same in
order to have body neutrality, and that's not the case.
I could recognize the ways in which my body is
different and has different needs, that has different accessibilities, but
(28:15):
my body is gonna be there, like regardless, my body
is going to be there. And we can apply the
exact same logic to fatness. You're not punishing yourself by
being fat. You're not punishing yourself by not get anything.
They're not punishing yourself by not fitting into all of
these things. You are being punished and you are going
to take your body with you, so you might as
well feel that it is yours and that you have
(28:36):
possession over it and you have autonomy over it, even
as hard as that it is these days, do you
feel most days that you have autonomy over your body?
I could barely got my legs to do what I
want on a daily basis. Um, I have auton of
you over my body, but my body talks back. UM.
I do, to a certain extent, feel autonomy over my body,
(28:59):
and I've felt it more are so during the pandemic
because I don't have I don't have to be in
public around non disabled people who were grabbing at me
and ask me questions and I'm trying to hug me
and like pick me up or I don't know, but
I feel way more autonomy being alone than I do
in public um. And I feel like more myself And
I'm very much so an introvert because of the ways
(29:21):
I've been socialized with my disability. I know that you
recently quit your job as a communications manager at a
disability nonprofit. Why did you quit your job and what
does the future look like for you professionally? So I
I quit my job. I knew after spending months reading
(29:44):
over medical ration guidelines um and like begging people to
take this seriously and begging people to take the disability
community seriously. Um, And we got to the pandemic Like
it was just breaking my heart every single day two watches,
the disability community was disregarded, and even to this day
it just it hurts a lot too to watches people
(30:04):
just be like, well, I just want to get back
to normal because I have a life to live um
and automatically saying the quiet part out loud um. And
So I knew, like shortly after that, I was like,
I can't keep doing this. It felt like drinking through
a fire hose for two years because disability advocacy had
so many ripple effects as oppertaining to this pandemic. So
I was like, I have to, I have to take
care of myself. UM, and then I do. The second
(30:26):
time that happened was like I read a book for
pleasure and cried. And it wasn't even a sad book.
It was just like I cried because I hadn't had
the focus to enjoy something and I couldn't figure out
how to enjoy things that I had enjoyed for years
and it was just burnt out. And so what I
want to do with this free time is like get
back to the creating that I always had wanted to do,
(30:46):
and get back to the projects in the artistry and
just having fun with the work that I do. I
can't keep pouring from an empty vessel. Um. As they
say it's there's nothing left. It seems like it's a
great time to refill that vessel. So you've mentioned creative
projects and acting, and I would love to know, like
what's your dream project and role? So my dream project,
(31:10):
I've been working on it for like three or four years. UM.
I am working on a series of my dating life
as a disabled Black woman. UM. And it's it's hilarious
because nobody knows what to do with you when you're
doating well. Disabled and black, like they know, they know
the perceptions of being disabled, they know the perception of
being black, they don't know like the combination. So I'm
(31:31):
working on a comedy series, and I'd love to play
myself wout the My goal is to kind of show
more disabled black folks in these situations in like the
light of of day and those types of things. I'm
also working on my memo if I were you, I'd
kill myself and other disabled compliments, So I'm working on
(31:51):
that too. You know, I know that comedy is a
big part of the work that you do, both as
an activist and also just in your creative work. When
did you first know you were funny? Oh, my dad
and I used to practice. So I when I was
like nine or eight or nine years old. This girl
in my like third grade classic at bleeding and so
(32:14):
my dad and I would like run drills of comebacks
and we would go over them and over and over them,
and then like I would just install her every single
time she's trying to come for me, so um, and
then I'd like we practice that growing up at the
dinner table throughout my entire childhood, so I knew was
I knew I was witty. I didn't really realize that
(32:35):
was funny until you know, I started tweeting and getting
more in public. And does the affirmation that comes from
people engaging with you on social media? I mean, when
Lord knows, we know there's a lot of negative stuff,
but there is a lot of affirmation. Does that encourage
you to continue with the work that you do? And
that doesn't help as a laboratory for trying out jokes.
(32:55):
I feel like when it comes to being disabled, the
aff mes usually rely on who it comes from. Um,
when it comes from non disabled people who are just like,
you're so inspiring, I love you and like because because
that's the stereotype they expected me, Like, I don't. I
have no desire to plead to that. But when disabled
people are like, oh my goodness, I finally feel seen.
(33:15):
I get this, Like this is funny, this is funny
to me, Like this is a disability joke. I love that.
That's the type of stuff I love because I don't.
I have no desire to make the world easier for
non disabled people, like by default, yeah, of course, but
I just want more disabled people to feel seen and understood.
So like when it comes from them, I'm like, absolutely,
I love this. And for you, what makes a joke
(33:36):
a good joke whether or non disabled people feel uncomfortable? Um, wow,
I love it. You know. One of the things I've
learned over the years is like that I'm I'm still learning,
is like how to sit with discomfort and instead of
like pushing it away or being defensive and so, how
(34:00):
have you learned to be comfortable with discomfort? I've learned
when to be quiet. I think one of the greatest
skills in any sort of advocacy or just trying to
understand other people is just to be quiet. Um. I
feel like when on social media there's this push to
just be loud and no matter what you say, you
you'll you can apologize later. Um. There's certain things, well,
(34:21):
I'm just like, I don't need to talk on this,
UM speak on it. I don't need because I don't know.
I don't know well enough to actually say anything worthwhile,
um without actually harmoring somebody, because I don't know enough
the intricacies to to navigate that space. And so I
take more time to listen and try to sit with
you know, Okay, I don't know much about the Jewish faith.
(34:41):
I'm gonna sit here and listen. Like people will see
me from reposting stuff, but they'll never see me talking
about stuff I don't know about. Yeah, and I know
when to be quiet. That's my greatest gift is silence,
you know, I agree, Um, And the older I get,
the more I understand when to speak and when to
listen and sort of figure out where my lane is
(35:02):
and how to stay the funk in it exactly, Amani.
This has been an amazing conversation, And thank you for
joining me on my little podcast. And I think you're
fucking hilarious. Thank you. I had so much fun talking
to you. Thank you so much. You can keep up
with me and the podcast on social media on Twitter
at our Gay and Instagram at Roxane Gay seven four.
(35:25):
Our email addresses Roxanne Gay Agenda at gmail dot com,
and we would love to hear from you from Luminary.
The Rock sand Gay Agenda is produced by Curtis Fox.
Our researcher is Yesaga Moreno, and production support is provided
by Caitlin Adams and Meg Pillow. I am Roxanne Gay,
your favorite that feminist. Thank you for listening,
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