Subscribe
Share
Share
Embed
From the Margins: Let’s Create the Narrative Together
What About Rural Health?™ is a podcast series dedicated to bringing focused
discussions on the unique challenges, lived experiences, opportunities, and innovations
within rural healthcare—both locally and globally. Our mission is to bring rural health to
the forefront of the global health conversation, ensuring these stories are not just heard,
but impossible to ignore.
Hosted by Chinasa U Imo, a Global Health Policy Strategist, and produced by
WARH?™ Studios, this immersive series blends first-hand accounts, expert insights,
policy conversations, and cutting-edge research to elevate rural health in the global
discourse. Each episode features voices from the frontlines—community members,
healthcare professionals, researchers, and policymakers—unpacking the structural
gaps and innovative solutions shaping access to care in underserved communities.
From deep-dive interviews to field-based storytelling, we bring rural health out of the
margins and into focus—sparking dialogue, inspiring action, and influencing decisions
and policies that advance equity.
Whether you're a health professional, a student, a researcher, a policymaker, an
advocate, or a curious listener, What About Rural Health?™ invites you to rethink global
health through a rural lens—and join the movement to make rural health impossible to
ignore.
0:00:02.560,0:00:08.880
Welcome to the What About Rural Health
podcast. A place where research, policy,
0:00:08.880,0:00:16.080
and real life stories come together to ask the
critical question. What about the communities
0:00:16.080,0:00:25.120
too often left behind? I am Chinasa, a development
and global health policy strategist. And for me,
0:00:25.120,0:00:31.680
this work is personal. From the village health
workers struggling with limited supplies to
0:00:31.680,0:00:38.960
the mothers walking miles for care, their
stories shape the policies we need. Join me
0:00:38.960,0:00:46.800
as we uncover challenges, spotlight innovations,
and amplify the voices of those at the heart of
0:00:46.800,0:00:55.840
rural health systems. Because every community
matters, and it is time the world listens.
0:00:58.080,0:01:03.760
Hello and welcome. You are listening to
the podcast that asks the question too
0:01:03.760,0:01:12.080
many people forget. What about rural health?
I am your host Chinasa Imo and together we are
0:01:12.080,0:01:20.400
uncovering the stories, challenges and innovations
shaping health care in overlooked communities.
0:01:20.400,0:01:28.000
Rural health financing conversation often focus
on infrastructure, workforce shortage or insurance
0:01:28.000,0:01:35.360
coverage, but they rarely do discuss other
fundamental questions like who is health financing
0:01:35.360,0:01:43.520
designed for, who is it currently serving well
and who is it not. This podcast series rethinking
0:01:43.520,0:01:52.080
rural health financing investment challenges and
opportunities is interrogating these questions.
0:01:52.080,0:01:59.120
We are looking beyond the line items and the
budgets and we are now asking the question how
0:01:59.120,0:02:06.720
health financing discussion shape access dignity
and outcomes especially for people living at the
0:02:06.720,0:02:14.480
margins of the health care system such as the
deaf and disabled people in our communities.
0:02:14.480,0:02:21.680
Across this series, we will explore how financial
decisions influence who gets care, how care
0:02:21.680,0:02:29.040
is delivered, and whose needs are prioritized,
especially in rural and hardto-reach communities.
0:02:29.040,0:02:38.480
And today's episode is titled Excluded Voices:
Financing Care for Deaf and Disabled Communities
0:02:38.480,0:02:47.520
in Rural Health Systems. It highlights disability
access because it exposes a fundamental truth.
0:02:47.520,0:02:54.400
When system fails to budget for access, the
design becomes exclusionary and for people
0:02:54.400,0:03:02.160
with different abilities, the cost of exclusion is
deeply consequential. In rethinking rural health
0:03:02.160,0:03:08.720
financing through the lens of deaf communities,
we are talking about language access, community
0:03:08.720,0:03:16.160
barriers, and the hidden cost that individuals
and their families absorb when systems don't
0:03:16.160,0:03:24.640
budget for their inclusion. But before I introduce
you to my guest today, let us take a quick break.
0:03:26.000,0:03:32.240
If you are enjoying this conversation, don't
forget to subscribe to What about Royal on all our
0:03:32.240,0:03:39.920
podcasting streaming platform. We are on Spotify,
Amazon Music, Apple Podcast, Listen now and so on.
0:03:39.920,0:03:49.040
And yes, we are on YouTube as well. Your support
means a lot to us. Please like, leave a comment,
0:03:49.040,0:03:58.560
share, and most importantly, drop us a review. It
helps others discover this important conversation.
0:03:58.560,0:04:04.320
All right, welcome back to the episode. You are
still listening to what about rural health with
0:04:04.320,0:04:13.840
China. Without much ado, let me introduce you to
my guest. Joining me in the studio today is Grace
0:04:13.840,0:04:22.640
Lester. Grace is a clinician, an advocate for the
dev community, and a researcher whose work sits
0:04:22.640,0:04:30.160
at the intersection of health, justice, and human
rights. She work closely with deaf individuals as
0:04:30.160,0:04:37.200
they navigate health care systems, courtroom, and
the casserole institution, a place where access to
0:04:37.200,0:04:43.200
health care for disabled individuals becomes
challenging when they are unable to receive
0:04:43.200,0:04:51.920
tailored services. Grace is left deafened and her
advocacy is rooted in deaf liberation. Her work
0:04:51.920,0:04:59.360
focuses in confronting structural violence against
deaf people in the prison system through research
0:04:59.360,0:05:07.680
writing and public education. She's also writing
a book on the experience of deaf communities in
0:05:07.680,0:05:14.240
prison. And this is important because in
those settings lack of access is not just
0:05:14.240,0:05:21.520
about inconveniences. They can be lifealtering
experience. We will take some time in this
0:05:21.520,0:05:30.960
conversation to sit with that work and discuss
what this means and what it reveals in our system.
0:05:30.960,0:05:38.800
She's also a primary organizer in De Relief
Gaza, a mutual aid network working to ensure
0:05:38.800,0:05:47.120
DE Gazan can access life-saving care and services
in the midst of ongoing violence and displacement.
0:05:47.120,0:05:53.520
I want us to understand that today's conversation
is not only about highlighting the health care
0:05:53.520,0:06:03.040
needs of disabled people but also how health
financing priority delineates who we consider
0:06:03.040,0:06:10.560
essential versus who we considered optional in
our collective value system as a society and
0:06:10.560,0:06:16.880
who gets left out in that trajectory. I'm really
grateful to have you here for this conversation,
0:06:16.880,0:06:22.400
Grace. I'm really grateful to be here. I'm so
looking forward to it. Thank you so much. And
0:06:22.400,0:06:29.200
to our listeners, I want you to think about
your own community. What does access actually
0:06:29.200,0:06:36.560
look like when you where you live? Who bears the
cost when systems are not designed for inclusion?
0:06:36.560,0:06:44.720
and who get left out when financing decisions are
made without differentlyabled community people on
0:06:44.720,0:06:53.920
the decision table. So think about that while
I zoom back and discuss with Grace. So Grace,
0:06:53.920,0:07:01.280
I'm so happy to have you here. But before we dive
in, I and get into all of this conversation around
0:07:01.280,0:07:07.920
financing policies and systems. I want to start
with you. When you think about the work you do
0:07:07.920,0:07:14.320
with deaf communities, especially in health
care settings, what moment or experience kept
0:07:14.320,0:07:20.640
you going? I think I've really thought about this
question before we came in and there's a lot of
0:07:20.640,0:07:27.920
moments that came to my mind before I settled on.
I think one of the most profound moments that I've
0:07:27.920,0:07:32.720
had early on when I was learning more about deaf
people's experiences within the prison system,
0:07:32.720,0:07:39.680
I was talking to a man who he was incarcerated
for like 23 years. Um, and he was deaf in both
0:07:39.680,0:07:45.040
ears. Uh, he used colear implants, so he had some
hearing assisted devices that ended up being taken
0:07:45.040,0:07:51.120
away from him by correctional officers while he
was incarcerated. really had very few avenues to
0:07:51.120,0:07:57.440
um communication throughout multiple decades
of being incarcerated. And in the course of
0:07:57.440,0:08:03.680
our conversation, I was asking him about self-
advocacy and how he had his rights met. And he
0:08:03.680,0:08:08.240
didn't know what the word rights meant. Like
he had never heard that word before. Um and
0:08:08.240,0:08:14.400
I think that sits at so much of the intersection
of so many different system failures, right? like
0:08:14.400,0:08:19.520
when you have deaf people who don't have enough
access to language to have vocabulary around what
0:08:19.520,0:08:23.440
does it mean to be a civic participant? What
does it mean to advocate for yourself? These
0:08:23.440,0:08:29.040
different things and then put into a system where
you are okay, you might have a right, but you're
0:08:29.040,0:08:35.840
the one who has to fight for that right, etc.,
etc. Um, and I think that it's such a relevant
0:08:35.840,0:08:41.440
moment because you don't have to be a person who's
advocating in a prison to be able to say, "Okay,
0:08:41.440,0:08:46.080
you're an educator or you're a family member of
a deaf person or you're you could be a language."
0:08:46.080,0:08:51.360
There's so many different ways that you can
intervene at any moment to make sure that
0:08:51.360,0:08:58.320
deaf people are more holistically included and at
that point are not going to get to a point where
0:08:58.320,0:09:02.080
they're in a system where they're supposed to, you
know, be advocating for a right that they don't
0:09:02.080,0:09:08.080
even know that they have to begin with. So that's
one of my my big moments of, you know, wow, people
0:09:08.080,0:09:14.080
have a lot of moments to intervene. Yeah. Thank
you so much for your response and when you shared
0:09:14.080,0:09:22.640
that like the story of your encounter with this
person that is dealt in both ears and I wanted
0:09:22.640,0:09:29.520
to make sure that we get to like I get to pivot
this question from an individual to ask you at
0:09:29.520,0:09:36.640
what point did you realize that this is not just
an individual encounter like you can have pockets
0:09:36.640,0:09:43.920
of this experience with different individual But
having that and putting them together, it becomes
0:09:43.920,0:09:50.800
a structural issue. At what point did you realize,
oh, this is not just me helping one person. I
0:09:50.800,0:09:56.880
need to look at it like step back and bringing a
structural lens to look at it holistically. You
0:09:56.880,0:10:00.960
know, I mean, I think that so when I was young,
I had a loved one who was incarcerated, right?
0:10:00.960,0:10:07.200
And so that was my first exposure to the system
itself. And it was I I'm late deafened as well.
0:10:07.200,0:10:13.600
So, I was born hearing and then I lost my hearing
later in life. I was 13 when I started losing my
0:10:13.600,0:10:18.640
hearing and then I was 14 when my loved one was
incarcerated. Right? So, I'm navigating my own
0:10:18.640,0:10:23.360
deafness while at the same time navigating this
person who has been removed from our community
0:10:23.360,0:10:30.080
and put into a space and reckoning with both of
those things at the same time. And I do remember
0:10:30.080,0:10:34.960
exactly, you know, these years of me trying to
have enough access to be able to communicate and
0:10:34.960,0:10:38.880
sustain a relationship with my loved one when
something as simple as how do I make a phone
0:10:38.880,0:10:43.760
call to this person? You know, we can't just meet
up in person. You know, it's something so simple
0:10:43.760,0:10:49.280
that we don't think about is an audio call, but
that's your lifeline to your community. And if you
0:10:49.280,0:10:54.640
don't have an accessible means of communication,
then that cuts off a relationship, right? And
0:10:54.640,0:11:00.720
so I think that it took me a long time before I
started to think, oh, if this is happening to us,
0:11:00.720,0:11:04.400
it's happening to other people, right? And not
only if it's happening to us, it's happening to
0:11:04.400,0:11:08.320
other people. But if I'm the deaf person on the
outside, what is that like for the deaf person on
0:11:08.320,0:11:15.520
the inside? And I started looking more into the
prison system is a tough one because it's really
0:11:15.520,0:11:20.720
challenging to find information about what's
going on in carceral spaces in the first place.
0:11:20.720,0:11:26.320
I agree with you on that one. Really, really. And
it's and I believe that that's a very intentional
0:11:26.320,0:11:33.280
mechanism of obscuring people from having outcry
or obscuring people from being able to advocate
0:11:33.280,0:11:39.200
or to intervene, right? And because there's,
you know, a policy that's going to look one
0:11:39.200,0:11:43.600
way in a local jail compared to a policy that's
going to look a different way in a state prison
0:11:43.600,0:11:47.600
compared to how that's going to look on a federal
level, what that's going to look like in an ICE
0:11:47.600,0:11:53.680
institution. Like, they all look very differently.
And as a result of that, it can be really hard for
0:11:53.680,0:12:00.240
researchers to even get into every single facility
and to ask the most basic question as how many
0:12:00.240,0:12:04.560
deaf people are incarcerated, what services are
they getting, what services are they not getting,
0:12:04.560,0:12:10.240
right? And the information that we currently
have is what's published by the Federal Bureau
0:12:10.240,0:12:15.760
of Prisons. And so clearly when you are the system
yourself and you're the one who's producing the
0:12:15.760,0:12:20.480
information about it, right? like what kind how
accurate or reliable is that information going
0:12:20.480,0:12:26.560
to be? That being said, my belief is that it's an
underestimate. What they're publishing is that one
0:12:26.560,0:12:31.360
in 10 people in state prisons and one in 16 in
federal Actually, I switched that up. One in 10
0:12:31.360,0:12:40.080
people in federal prisons and one in 16 in state
prisons is deaf. That's a massive massive number.
0:12:40.080,0:12:46.480
And if you grapple with nothing other than
the fact that 10% of the people within our
0:12:46.480,0:12:51.600
carceral system and when okay I should back up
and say when I'm using the word deaf I'm using
0:12:51.600,0:12:58.000
it across the spectrum. So when I say deaf I'm not
necessarily saying only culturally deaf people who
0:12:58.000,0:13:04.000
were born and raised in the community know ASL
are bilaterally deaf. I'm talking about anyone
0:13:04.000,0:13:10.800
who can be impacted by autism. And autism is like
violence and prejudice against deaf people, right?
0:13:10.800,0:13:16.160
So if you're heart of hearing in one ear and that
impacts your day-to-day life, you're a part of the
0:13:16.160,0:13:20.720
deaf community. If you're deaf, disabled, deaf,
blind, if you're culturally deaf, if you're not
0:13:20.720,0:13:25.200
culturally deaf, you use sign language, you don't
use sign language. I'm using that as an umbrella
0:13:25.200,0:13:30.560
term, right? Because the way that deafness is
experienced is as many deaf people as there are
0:13:30.560,0:13:35.040
on the earth. So I think that pigeon holing it
to a very particular group of people actually
0:13:35.040,0:13:42.160
misses out on some of the I agree with you.
Yeah. But um but 10% like that's with with no
0:13:42.160,0:13:45.840
further context. You can't say that's anything
other than structural and you can't say that's
0:13:45.840,0:13:51.840
anything other than targeted. And I think that one
of the really unique things about deaf identity is
0:13:51.840,0:14:00.400
that you can cause a person to become deaf, right?
So it's not even just oh it's 10% of who's coming
0:14:00.400,0:14:05.840
in right it's it's could be and we don't have
the number of how many people are entering a
0:14:05.840,0:14:13.440
jail or entering a prison hearing and leaving it
deafened but we do have people are incarcerated
0:14:13.440,0:14:19.520
for upwards of 30 years because of these three
strikes policies or because of different you know
0:14:19.520,0:14:26.320
truth and sentencing policies and people
are in conditions that are unbelievable.
0:14:26.320,0:14:31.840
I've I've read stories and interacted with people
who became deaf incarcerated because they were
0:14:31.840,0:14:38.640
abused by a correctional officer and blunt forth
trauma to the head can cause deafness or they had
0:14:38.640,0:14:43.920
a bug infestation and that festered and festered
and festered to the point that they had a fever or
0:14:43.920,0:14:49.200
to the point that they got an infection and that
caused them to become deaf. Right? So there's very
0:14:49.200,0:14:55.120
clear tools within the system itself that cause
people to become deaf and then withhold services
0:14:55.120,0:15:01.600
for them being deaf to be able to thrive in in
that environment because it's so fundamentally
0:15:01.600,0:15:09.040
dehumanizing. Wow. That's a that's a lot to take
in and and seriously. Um, when you were mentioning
0:15:09.040,0:15:16.640
all of these things and describing different
ways that people come in contact with deafness,
0:15:16.640,0:15:24.000
um, one thing struck me. All of these things were
entangled within access to something like, you
0:15:24.000,0:15:31.280
know, access to services that should be available,
but it's not there. Could be intentionally
0:15:31.280,0:15:37.200
withhold or just structured within the system
for it not to be made available. Or it could be
0:15:37.200,0:15:46.880
an omission of planning around specific groups.
It's easy for us to say we don't care about what
0:15:46.880,0:15:54.000
happened to people behind bars. But they are human
beings with different needs irrespective of you
0:15:54.000,0:16:01.600
know however the justice system get them there
and they require certain services to function as
0:16:01.600,0:16:10.400
human beings. And I'm hearing you say beside the
number of people who walking with deaf disability,
0:16:10.400,0:16:16.560
there are people who walking wholesomely and
worked out being deaf out of the implications
0:16:16.560,0:16:24.400
of the experience and the trauma they go through
in the system. And that brings me back to access.
0:16:24.400,0:16:30.640
Like when people talk about access for deaf
communities, it's often framed as an ethical
0:16:30.640,0:16:37.280
obligation. like somebody needs to do this. But
from your experience, what does access reflect
0:16:37.280,0:16:47.440
when it comes to like how are the system planning,
financing and prioritizing this access to care or
0:16:47.440,0:16:53.440
how are system withholding certain things so
that people don't get access to it because it
0:16:53.440,0:16:58.080
could I mean says we can sit here and talk about
a whole lot of thing but in your own experience
0:16:58.080,0:17:03.200
what does that look like? Mhm. I think it's a
really relevant question and I think that it's
0:17:03.200,0:17:09.760
an important one because of the fact that so many
people will say I believe that deaf people should
0:17:09.760,0:17:15.200
have access. I believe that you know all people
deserve these different supports and networks
0:17:15.200,0:17:20.160
and then when I ask you know okay so what are you
going to do in your organization or in your scope
0:17:20.160,0:17:25.440
to make sure that that happens most of the time
people say budgeting I can't afford an interpreter
0:17:25.440,0:17:29.920
or I can't afford to figure out you know paying
for live captions or all of these different things
0:17:29.920,0:17:36.480
right and it's challenging because people even
now you know defentric agencies grants are being
0:17:36.480,0:17:42.800
cut left and right right you know people who are
seeking out to provide services or saying we don't
0:17:42.800,0:17:48.320
have the logistical means to do it and I see I
mean even for example you know some of the work
0:17:48.320,0:17:54.800
that I do has been asking attorneys okay what's
been your experience representing deaf clients
0:17:54.800,0:18:00.960
or deaf clients what has been your experience in
civil courts and criminal courts both having an
0:18:00.960,0:18:07.120
attorney who's guiding you through the process and
I have there was one woman that I worked with who
0:18:07.120,0:18:13.920
she looked for nine months straight just to find
a a civil court divorce attorney who would accept
0:18:13.920,0:18:19.200
her case because of the fact that she required
an interpreter. And while we have the ADA and the
0:18:19.200,0:18:24.480
ADA is the you know Americans with Disabilities
Act that says she's entitled to an interpreter,
0:18:24.480,0:18:28.720
she's entitled to an interpreter in the court.
So the court is going to provide one while
0:18:28.720,0:18:33.040
they are there. But if she's going to have a
private interaction with her attorney, which
0:18:33.040,0:18:38.480
is a substantive amount of the preparation work
that she needs to do to get ready to be in court,
0:18:38.480,0:18:44.640
etc., the ADA doesn't cover that. And the ADA
actually says that it's the lawyer who needs
0:18:44.640,0:18:49.600
to pay for that. And so the lawyer is going
to say instead of saying, "I don't want to,"
0:18:49.600,0:18:53.840
they're going to say, "Well, working with deaf
people isn't my specialty. I want to make sure
0:18:53.840,0:18:58.400
that she gets the best care, so I'm going
to, you know what I mean? It's very sneaky.
0:18:58.400,0:19:07.040
such a loophole. Yeah. And I see that very
often of people will not have the resources,
0:19:07.040,0:19:11.920
not feel prepared, and so they'll say, "Well,
really, that's not our niche, right? We work with
0:19:11.920,0:19:16.240
immigrants, but we don't work with deaf people."
Or, "We work with people who are re-entering
0:19:16.240,0:19:20.320
society after they've been incarcerated,
but we don't work with deaf people." Well,
0:19:20.320,0:19:28.240
deaf people exist at every intersection of any
demographic, right? So to to just throw your
0:19:28.240,0:19:33.520
hands back and say, "Oh, well, we don't know how
to do that or we don't have the money for it." Um,
0:19:33.520,0:19:37.600
like it or not, you're you're furthering the
system of oppression that you are, you know,
0:19:37.600,0:19:44.000
seeking out to counter. I agree with you. Like
talking about finance and we think oh it's just
0:19:44.000,0:19:50.320
about making provisions in the budget to cover
things but what about like emotional provisions
0:19:50.320,0:19:57.680
you know professional provisions like making sure
that these things in every step of the way that we
0:19:57.680,0:20:05.680
are accurately planning and providing for them
beyond just money in the budget line that may
0:20:05.680,0:20:13.360
or may not be used because of the contours of law
like Sometimes when people tell me where you are
0:20:13.360,0:20:20.880
obligated to deliver these services to me I would
say yes I am obligated to deliver them to you but
0:20:20.880,0:20:28.960
I'm happy to look at the loopholes and that is
where lawyers I have seen like lawyers have their
0:20:28.960,0:20:39.280
field day identifying loopholes and weaknesses
in the language of the legal texts so that they
0:20:39.280,0:20:45.600
would avoid doing this that particular thing
that they are obligated to. So we know this and
0:20:45.600,0:20:52.640
since we know this, why can't we be very realistic
about what's our services really look like? What
0:20:52.640,0:21:03.120
assets really mean for people who have like double
vulnerability in reaching these different things
0:21:03.120,0:21:09.760
when they are seeking support and services. So
this is a program for rural health and it's what
0:21:09.760,0:21:16.560
about rural health and I I wanted to hear your
perspective about this topic and how they show
0:21:16.560,0:21:24.720
up or play out in rural underserved communities.
Mhm. I think a few of the biggest things that
0:21:24.720,0:21:29.760
come to mind is that so the deaf community, the
signing deaf community, right? So people who are
0:21:29.760,0:21:36.480
using ASL, BASL, different variations and dialects
of sign language across the state, typically we
0:21:36.480,0:21:42.400
pop up in hubs, right? So there's deaf schools or
deaf educational programs, deaf training services,
0:21:42.400,0:21:47.120
deaf jobs, and people will be, okay, there's a
huge deaf community in New York City or there's
0:21:47.120,0:21:51.760
a huge deaf community in DC, right? That's also
where the most interpreters are going to be.
0:21:51.760,0:21:57.840
And so when you are in a space that, you know,
I've seen people, okay, you got incarcerated,
0:21:57.840,0:22:02.240
you don't get to just pick, oh, whatever the
closest state prison or whatever the closest
0:22:02.240,0:22:07.360
jail to your home. No, they're just going to put
you in whatever facility they put you in. And that
0:22:07.360,0:22:10.800
could have to do with security. That could have to
do with many different reasons, right? that that
0:22:10.800,0:22:18.000
could be I mean if you're in a state like Texas or
California oh you could be a 14 15 hour drive from
0:22:18.000,0:22:24.000
your home community right and especially if you're
in like a more midwestern state where there's
0:22:24.000,0:22:30.880
fewer interpreters to begin with it's really hard
to get an interpreter to you can put out the thing
0:22:30.880,0:22:37.280
you can I mean let's assume right that you have
correctional officers who are even willing and
0:22:37.280,0:22:41.520
knowledgeable enough to say in the first place
we see the staff person needs interpreters,
0:22:41.520,0:22:46.480
we're going to make the effort to provide them
interpreters, which already from the jump that's
0:22:46.480,0:22:53.200
that's making a really optimistic assumption.
But let's say that they do seeking out, okay,
0:22:53.200,0:22:59.360
first of all, the the field of interpreters across
the states is about 90% white women. And so,
0:22:59.360,0:23:03.760
how many of them are going to be willing to work
with people who are incarcerated in the first
0:23:03.760,0:23:09.360
place with all of the stigma, with all of the
bias, with all of the many layers there? But then
0:23:09.360,0:23:14.480
second of all, somebody who's going to say,"I have
to drive three hours to get to this assignment one
0:23:14.480,0:23:18.800
way and I don't get paid and compensated for
that time." People are not going to take that
0:23:18.800,0:23:24.960
position. And so it's really challenging to find.
And I mean, in a state like Hawaii right now, they
0:23:24.960,0:23:31.360
have 31 certified interpreters across the state,
across the entire state. And so kids in schools,
0:23:31.360,0:23:36.240
people at doctor's appointments, any place that
you go that you need an interpreter, there's 31
0:23:36.240,0:23:40.800
to choose from in the whole state. in the whole
entire state and there's a couple of islands that
0:23:40.800,0:23:45.680
don't have certified interpreters on them at all.
So now somebody's going to have to hop a flight
0:23:45.680,0:23:50.160
in order to go into a prison where they don't
want to work in a prison and in the first place,
0:23:50.160,0:23:56.640
right? So there's these layers. There's also the
layer of in rural communities there tends to be
0:23:56.640,0:24:03.520
worse access to Wi-Fi. And the ways that a hearing
person would make phone calls outside of a,
0:24:03.520,0:24:07.920
you know, incarcereral facility would be using
just a normal auditory phone. The way that a
0:24:07.920,0:24:12.160
deaf person would be is a video phone. And a
video phone is not relying on a landline. Most
0:24:12.160,0:24:18.080
of the time it's relying on Wi-Fi. So, if you have
patchy Wi-Fi, right, like I I regularly call this
0:24:18.080,0:24:25.520
person who's incarcerated here in Illinois and our
conversations, usually it will go about 2 seconds
0:24:25.520,0:24:31.200
of clear video quality followed by two seconds
of really patchy, blurry, choppy, and then the
0:24:31.200,0:24:34.480
next and it's back and forth and back and forth
and back and forth. So, in those two seconds,
0:24:34.480,0:24:39.120
okay, I'm trying to pick up I maybe get like six
words that you said and then the next I'm like
0:24:39.120,0:24:42.720
going to guess and then the next and it's back
and forth and back and forth. And it's like,
0:24:42.720,0:24:47.200
you know, not only his social support, but that's
how he's calling his attorneys and he's trying to
0:24:47.200,0:24:52.160
get clemency, right? And so, how are you gonna,
even if you have an interpreter there, how are
0:24:52.160,0:24:58.960
you going to be able to have a clear conversation
and communicate what your needs are when you don't
0:24:58.960,0:25:06.000
have good enough Wi-Fi to be able to make a phone
call out, right, or to receive a call. Um so these
0:25:06.000,0:25:13.520
very basic things that you know it feels very um
very strategic in the ways that and and people
0:25:13.520,0:25:22.080
my final thought on this is that um people will
often you know one um one person may have a lot
0:25:22.080,0:25:27.760
of services and like resources already set up in
it. So they have the video phone available. They
0:25:27.760,0:25:33.920
regularly schedule interpreters to come in, etc.,
etc. They've got and that um sometimes the deaf
0:25:33.920,0:25:37.440
people that I've talked to, it's like a play on
words. They'll call it like deaf row where like
0:25:37.440,0:25:42.080
a lot of deaf people are housed together, right?
Like they're all in this this cell unit or this
0:25:42.080,0:25:47.920
block together. Um and they'll have more kind of
consistent access to some of the resources that
0:25:47.920,0:25:54.880
they need. I've seen several people who start to
advocate and ask for more. Hey, you know what?
0:25:54.880,0:25:59.760
we have interpreters, but they're not that good of
interpreters or, you know, I'm seeing that we need
0:25:59.760,0:26:05.440
further resources on we need announcements boards,
we need these different things. When correctional
0:26:05.440,0:26:09.840
officers see that kind of behavior and they don't
like it, they can transfer you to a different
0:26:09.840,0:26:13.840
prison and they can make up whatever, you know,
oh, you were having behavioral issues or you were
0:26:13.840,0:26:19.120
being whatever different reason that they want to
say. So then they transfer you to a more isolated
0:26:19.120,0:26:24.480
prison which a again in a rural community it's
going to be harder for your family to come and
0:26:24.480,0:26:30.480
visit you and b they can guarantee that you are
completely linguistically isolated right so where
0:26:30.480,0:26:34.880
before you maybe had eight people in the prison
who were also deaf who could sign with you this
0:26:34.880,0:26:39.360
next prison you're the only deaf person there
you use sign language you don't use your voice
0:26:39.360,0:26:44.720
and I've seen people who have said oh you know
the the correctional officers they said that sign
0:26:44.720,0:26:49.440
language was a gang language anguage or it was a
code language. So, if I tried to sign with anyone,
0:26:49.440,0:26:52.480
even a hearing person who didn't know sign
language, but I was going to teach them the
0:26:52.480,0:26:56.160
basics, we would be punished. We would all be
punished. So, then the hearing people would back
0:26:56.160,0:27:01.280
off and they'd be like, I'm afraid of signing with
you cuz I think I'm going to get reprimanded. So,
0:27:01.280,0:27:05.120
that's like not even the level of like,
oh, now I'm linguistically isolated,
0:27:05.120,0:27:11.040
but I am completely socially siloed to the point
that nobody even wants to come around me because
0:27:11.040,0:27:17.600
I'm afraid that if I do, I'll get punished, you
know? So, it's really, really, really layered on
0:27:17.600,0:27:23.280
the ways that they will use space in particular of
like what unit you're in to define your quality of
0:27:23.280,0:27:30.000
life and your access to services. Thank you for
your response. like what I'm hearing um from all
0:27:30.000,0:27:38.800
of this thing that you try to lay out one after
the other is that I think at the forefront it will
0:27:38.800,0:27:46.000
look like the systems are unintentionally designed
for very specific kinds of people and I would
0:27:46.000,0:27:53.760
agree because the people who design the systems
are usually very ablebodied people and they think
0:27:53.760,0:28:02.240
about themselves 90% of the time before they begin
to factor in other kind of demography. Right?
0:28:02.240,0:28:10.720
But it is what they do in aftermath that worries
me cuz it's one thing that okay when we designed
0:28:10.720,0:28:22.080
the system we weren't thinking about how do we
include say um people who are who have working
0:28:22.080,0:28:31.120
challenges or how do we incorporate services
for deaf people or blind people or whatever.
0:28:31.120,0:28:37.360
uh you know services that needs to be added. But
then you begin to see these scenarios play out
0:28:37.360,0:28:44.640
in your centers, in your environment, in your
care system, and you react in certain ways that
0:28:44.640,0:28:57.040
reinforces your position as someone who don't
care. Like it's like yeah there was an omission
0:28:57.040,0:29:03.280
in incorporating you in the plan but from the look
of things based on where I'm sitting and where you
0:29:03.280,0:29:12.400
are sitting across me I don't care I don't give a
hoot you have to bend over and work with whatever
0:29:12.400,0:29:20.720
systems that we give you rather than oh we need
to expand our system a little bit to accommodate
0:29:20.720,0:29:29.760
you That is what I'm hearing. And then the
second thing that you mentioned about rural
0:29:29.760,0:29:37.360
care and distance is not just about the distance
to travel or the distance to where you are removed
0:29:37.360,0:29:47.520
and placed within the casera system but it's also
about the entire definition of place in service
0:29:47.520,0:29:55.200
delivery or place in service conceptualization.
And I wanted to bring that question to you to ask
0:29:55.200,0:30:03.040
how does place change the experience of being
deaf or having you know other kinds of ability
0:30:03.040,0:30:10.080
when seeking care? How does a place inform how
much you can get access and how much or how
0:30:10.080,0:30:16.240
little you you eventually receive those services
that you're looking for? Mhm. I mean I think one
0:30:16.240,0:30:21.840
of the first things that comes to mind has also
been working with because a misconception that a
0:30:21.840,0:30:27.360
lot of people have is that sign language is this
like universal thing right it's not every single
0:30:27.360,0:30:33.040
country different regions have very different sign
languages I mean it can be a dialect or it could
0:30:33.040,0:30:40.640
be a completely separate language and what we
see with a lot of deaf immigrants who maybe their
0:30:40.640,0:30:46.880
native language is LSM like Mexican sign language
or their native language. There was a recent um
0:30:46.880,0:30:54.960
case where a man was um he was incarcerated in an
ICE detention center for several several months
0:30:54.960,0:31:01.760
without an interpreter because they couldn't find
an interpreter who knew his native sign language,
0:31:01.760,0:31:05.600
right? Because he was an immigrant who
was using not American Sign Language.
0:31:05.600,0:31:12.000
What I've seen is a mix of sometimes they'll just
throw an ASL interpreter in there and be like,
0:31:12.000,0:31:15.600
"All right, based on what I know about sign
language in general, I'm going to kind of try
0:31:15.600,0:31:23.680
and guess what you're saying." Which is like if
you had like a spoken Greek interpreter and you
0:31:23.680,0:31:29.680
were trying to like it's it's completely absurd.
Completely absurd. Right? So even just thinking
0:31:29.680,0:31:36.720
about space in context of how it develops your
relationship to language and then what services
0:31:36.720,0:31:43.360
are available in your native language or in the
language that you're most comfortable or fluent
0:31:43.360,0:31:49.520
in. I've also seen, you know, judges who will
work with deaf immigrants and they will assume,
0:31:49.520,0:31:55.760
oh, okay, you know, maybe this person we are not
going to find a Mexican sign language interpreter,
0:31:55.760,0:32:01.040
but I'll just write everything out in Spanish.
Mexican sign language and written and spoken
0:32:01.040,0:32:05.760
Spanish are not the same language, right? And so
again, thinking about the assumptions that are
0:32:05.760,0:32:12.160
made about a person because of their relationship
to space and language and these different things
0:32:12.160,0:32:17.920
and then finding the resources that areworked
in. And there's there's an organization called
0:32:17.920,0:32:25.520
Monosuniditos um that has been doing a lot of
really great work to counter situations like where
0:32:25.520,0:32:30.480
this person is, you know, waiting and waiting
and waiting. And I think also understanding
0:32:30.480,0:32:37.200
right you know for this person the length of their
detainment was completely correlated to the fact
0:32:37.200,0:32:42.800
that there was no interpreter available and I've
seen that across the board right maybe somebody
0:32:42.800,0:32:47.440
sometimes people have to take like a a course
that's necessary for release you might have to
0:32:47.440,0:32:53.520
take a victim awareness class or you might have to
take a various different kinds of rehabilitation
0:32:53.520,0:32:59.120
courses right to be able to be eligible for
parole so that you can go home. I was talking
0:32:59.120,0:33:08.640
to a man who said he was incarcerated alongside
several other deaf people in his unit and they had
0:33:08.640,0:33:14.320
interpreters there, but the interpreters didn't
use the same sign that the other people in his
0:33:14.320,0:33:19.360
class were using. And so they just failed the
class and it was a year-long class, right? They
0:33:19.360,0:33:27.280
failed the class 18 times in a row, which means
that they were incarcerated for 18 years. Wow.
0:33:27.280,0:33:31.840
Every single year they were eligible for parole.
They were eligible to go home and be back in their
0:33:31.840,0:33:37.600
own communities, but because of a language
failure, they were further incarcerated. And
0:33:37.600,0:33:45.520
from my perspective, in a prison system that is
exploitative of labor that is all the while, while
0:33:45.520,0:33:50.640
these men are incarcerated for 18 years longer
than their original sentence, are, you know,
0:33:50.640,0:33:56.160
producing whatever or laboring within the prison
system in whatever different ways, right? like
0:33:56.160,0:34:05.440
you're able to exploit a person on such a such a
pervasive long scale level um based on their their
0:34:05.440,0:34:12.320
proximity to do something as simple as you know
get the language access that they need or or have
0:34:12.320,0:34:16.720
somebody stop and say, "Hey, you know what? Maybe
if this person has taken this course 18 times in a
0:34:16.720,0:34:21.760
row, there's something wrong with the course that
they're not getting and they're not grasping." And
0:34:21.760,0:34:28.000
maybe we should readress how that's working. But
I know I jump around a lot. So always feel free to
0:34:28.000,0:34:34.160
pop in um and interrupt me when I'm straying off
the course. You are not I mean you what you're
0:34:34.160,0:34:43.840
discussing like you're painting a cool picture or
rather say a clear picture of what this means like
0:34:43.840,0:34:54.880
when you put space language and mix it up with
disability how that impact different people and
0:34:54.880,0:35:07.120
reflecting backwards to I mean I am not in any way
identifying came as a disabled person and I know
0:35:07.120,0:35:13.760
what that experience feel like. The English that
I speak, even though it's English, is different
0:35:13.760,0:35:21.440
from British English, is different from American
English because it's Nigerian English. It's been
0:35:21.440,0:35:28.880
indoctrinated into my local culture to the point
where there's a version of English language that
0:35:28.880,0:35:36.080
I speak that is Nigerian language and that's my
spoken identity, right? And when I interface that
0:35:36.080,0:35:43.360
with American English, often times people will be
like, "Oh, you have an accent." It's a cool way to
0:35:43.360,0:35:49.920
say we don't understand a jack of what you're
saying. So now imagine and because I like to
0:35:49.920,0:35:58.960
paint clear picture if a very abled human being
who can use language who speaks English and yet
0:35:58.960,0:36:09.600
finds it difficult to use this English language in
multiple spaces can have this challenge then how
0:36:09.600,0:36:18.560
do we triple that effect to say um someone who is
barely catching up on English language and their
0:36:18.560,0:36:25.840
predominant language is say Mexican language or
Spanish language and then the the way we speak
0:36:25.840,0:36:30.240
it is different from the way we write like yes
if you see the way I write you'll be like oh my
0:36:30.240,0:36:35.440
god that's so clear that's so beautiful because
I can sit and write and edit all of the beautiful
0:36:35.440,0:36:42.480
things and throw in some punchline words that make
it look like I sound smart but that is not our
0:36:42.480,0:36:52.080
everyday use of language and That's intersect with
as you move from one place to another it intersect
0:36:52.080,0:37:00.880
with how much access you have with other people.
Move a Chicago to Alaska the language is already
0:37:00.880,0:37:08.960
different. And if this person have impairment
with hearing now imagine what that means for an
0:37:08.960,0:37:15.600
Alaskan service provider to provide services to
that person. So I I get I get what you're saying
0:37:15.600,0:37:22.240
saying and I I resonated with that and my followup
question to you because when you were talking I'm
0:37:22.240,0:37:30.320
like okay let's see what that looks like for those
who are not even in the casera system but because
0:37:30.320,0:37:40.320
of this brazing shortage of services and ability
to get adaptive you know assistance do you see
0:37:40.320,0:37:49.920
that causing like delays place to seek care for
people even when they need it, but they feel like,
0:37:49.920,0:37:56.000
you know, it's a waste of effort. Absolutely.
Yeah. And I mean, as my work as a deaf therapist,
0:37:56.000,0:38:02.960
right, like I provide services in ASL and I
would say well upwards of 50% of my clients
0:38:02.960,0:38:08.720
across the several years that I've been working,
every nearly Yeah. Not all, but many many of them
0:38:08.720,0:38:14.960
have come and they've said either I've never
had therapy because I could never find an ASL
0:38:14.960,0:38:21.600
provider therapist or I had several sessions with
a hearing therapist and didn't feel like my needs
0:38:21.600,0:38:26.960
were being met or didn't feel like I could really
express myself or be transparent or vulnerable or
0:38:26.960,0:38:30.720
all of these different things. So often, you
know, in in clinical school, right, we talk
0:38:30.720,0:38:34.400
about the therapeutic alliance, the therapeutic
alliance, the therapeutic alliance. When there's
0:38:34.400,0:38:39.280
not a shared language or a shared cultural
understanding, it can be really challenging
0:38:39.280,0:38:47.440
to get past that basic level of, okay, I trust
you enough to, you know, engage with you in the
0:38:47.440,0:38:53.600
first place. And I think it I really appreciate
what you shared. And I think that it's a very,
0:38:53.600,0:38:59.680
you know, kind of paralleling, okay, if these
are my experiences, then how would that overlay
0:38:59.680,0:39:04.720
into a deaf person's experience or how would that
overlay into an incarcerated person's experience,
0:39:04.720,0:39:08.880
right? And like being able to I think it's
one of the main thoughts that I've had as a
0:39:08.880,0:39:16.560
late deafened person, right, is like my early
journey into deafness was not this like I'm
0:39:16.560,0:39:21.360
going to develop a cultural identity and I'm going
to learn a language, right? It was meeting a lot
0:39:21.360,0:39:26.960
of medical practitioners who looked at my body as
something that needed to be fixed, right? As, oh,
0:39:26.960,0:39:31.040
you're losing your hearing, that's so sad, and now
there's something wrong with you, and we need to
0:39:31.040,0:39:35.520
change it, and we need to fix it, and we need to
do all of these different things. I mean, I I had
0:39:35.520,0:39:41.200
surgery after surgery after surgery after surgery
and had all of these different really renowned
0:39:41.200,0:39:48.000
um physicians who were on my team and I never once
had someone say, "Would you like the opportunity
0:39:48.000,0:39:54.320
to meet with a deaf mentor?" Or, "Would you like
the opportunity to connect with a person who can
0:39:54.320,0:39:58.800
teach you more about deaf culture?" Or, "Hey,
there's sign language classes that you could sign
0:39:58.800,0:40:03.520
up for." And that would make it a lot easier than
you having to wear these hearing aids that are
0:40:03.520,0:40:08.560
painful for you that you get really overstimulated
when you wear them. Right. So I think about
0:40:08.560,0:40:13.920
exactly what you said of like okay even as a
person who had consistent access to medical care
0:40:13.920,0:40:18.960
medical care in these kind of like top premier
spaces, right? Like was I given the tools to
0:40:18.960,0:40:25.040
have pride in my identity or to have a smooth
transition into deafness. Right? So, what is
0:40:25.040,0:40:32.480
that going to look like for a person who becomes
deaf while incarcerated or becomes deaf and says,
0:40:32.480,0:40:37.360
"Okay, then I want a deaf service provider,
but those service providers only know ASL and
0:40:37.360,0:40:42.640
now if I don't know ASL, then where do I start?
Because these ASL classes that I've tried going
0:40:42.640,0:40:47.040
to are only designed for hearing student, right?"
Like, there's all of these different layers about
0:40:47.040,0:40:54.320
like how do you transition smoothly? And I think
that a lot of people just end up getting stuck
0:40:54.320,0:41:04.400
and they create their own ways of navigating the
world without real systemic or structural support
0:41:04.400,0:41:10.480
because often if it does exist there's not a
network that will guide you into okay where
0:41:10.480,0:41:16.640
this can happen for you you know. So yeah, thank
you. Thank you for that response. And as you were
0:41:16.640,0:41:29.040
mentioning that what was moving through my mind is
how does financing model consistently promote this
0:41:29.040,0:41:38.240
culture of prioritization of what we think clients
need and how is it failing the people who really
0:41:38.240,0:41:46.320
need it. We live in a capitalist environment,
right? Yeah. Even in mixed economy, we start off
0:41:46.320,0:41:53.280
with we care about people and then we still move
into business model. Yes. Okay. If only we can
0:41:53.280,0:42:00.160
build the biggest technology that you just plug in
there and you know deaf people can begin to hear
0:42:00.160,0:42:09.680
and you know blind people can begin to see without
really connecting to the emotional well-being of
0:42:09.680,0:42:19.280
this people and their need for belongingness which
is the first step for healing for anybody. I want
0:42:19.280,0:42:27.520
my care team to walk up to me and ask me, "How are
you feeling today?" Yeah. What would be the best
0:42:27.520,0:42:36.160
cause of treatment? Yeah. That you think brings
in your agency into the conversation? And these
0:42:36.160,0:42:41.520
things are often left out in the convers
discussion table is like we look into your
0:42:41.520,0:42:48.160
chart. We think that we do abd you will become a
perfect human being and get mainstream back into
0:42:48.160,0:42:56.800
the society. So how does this financial models you
know consistently fail us in the community? How
0:42:56.800,0:43:02.720
does that Yeah. Yeah. I mean community absolutely
right because you think about like wow it's it's
0:43:02.720,0:43:09.280
weird to almost go back and be like really like it
doesn't cost you anything financially to develop a
0:43:09.280,0:43:14.720
relationship with a person, right? But those
are not the ways that we're taught to think.
0:43:14.720,0:43:21.440
It's and it's this very like uh exactly what you
said of this like checklist of okay I am going to
0:43:21.440,0:43:28.160
work with a deaf person so it's going to be A B
C I need to make sure that and you have this very
0:43:28.160,0:43:33.600
um narrow perspective or understanding of who
that person is going to be and how different
0:43:33.600,0:43:40.720
their experience is going to be if they are a deaf
blind person if they are a deaf immigrant if their
0:43:40.720,0:43:45.840
native language is English versus if their native
language is ASL versus if their native language is
0:43:45.840,0:43:50.960
Brazilian sign language, right? Like all of these
different factors of who they are as a person and
0:43:50.960,0:43:59.520
and you don't stop and say, "Okay, how can we
foster I'm really trying to like I think what I
0:43:59.520,0:44:07.600
initially started when I was, you know, beginning
my book, I remember thinking a lot people aren't
0:44:07.600,0:44:13.840
thinking about deaf people's experiences within
the prison system, right? And across the board,
0:44:13.840,0:44:20.240
there's a lot of neglect that's going on. And
over I've been researching this for years now,
0:44:20.240,0:44:29.200
right? And over the years, my perspective
has changed that again 1 in 10, one in 16,
0:44:29.200,0:44:34.640
it's not that you're not thinking about
it. It's actually quite strategic to say,
0:44:34.640,0:44:39.760
what is the easiest way that I could siphon a
person off from their community? What is the
0:44:39.760,0:44:47.840
easiest way that I can ensure continued community
disruption is to bring a person separate this
0:44:47.840,0:44:54.080
person out of their community and then when I
have them already isolated from broader community
0:44:54.080,0:44:59.200
to then cut off their capacity to communicate and
whether I've cut off their capacity to communicate
0:44:59.200,0:45:04.960
because they're a signing deaf person who doesn't
have anybody around them to sign and gets punished
0:45:04.960,0:45:12.640
for signing or a non-signing non-culturally deaf
person who doesn't have any resources to community
0:45:12.640,0:45:18.400
engagement or to cultural acquisition. And I think
that it's been a journey for me to understand that
0:45:18.400,0:45:24.480
cultural deprivation is a form of violence. And
it's a really effective means of prohibiting and
0:45:24.480,0:45:30.640
barricading people from networking with
one another, changing the status quo,
0:45:30.640,0:45:38.960
having healed and thriving deaf communities on any
level of society, whether that's within a space,
0:45:38.960,0:45:44.000
supporting people who are currently incarcerated,
or whether that's a deaf community who is
0:45:44.000,0:45:50.080
struggling to maintain, you know, athletes
programs or music and arts programs within
0:45:50.080,0:45:56.480
their school because funding for deaf communities
is getting cut left and right or people are having
0:45:56.480,0:46:03.760
to choose how they're going to use their SSDI very
strategically and so they don't want to you know
0:46:03.760,0:46:10.320
further their so there's yeah a lot of a lot of
layers there thank you very much for bringing that
0:46:10.320,0:46:16.320
to that conversation to everyone listening do not
forget to check out Grace book when it is out in
0:46:16.320,0:46:23.680
the market thank you for joining us Today episode
on what about rural health. If today's episode
0:46:23.680,0:46:30.640
moved you, changed you or make you think a little
bit different, please follow, subscribed and leave
0:46:30.640,0:46:37.840
us a review on your favorite doctor's platform.
And as always, let us keep asking the question,
0:46:37.840,0:46:46.400
what about rural health? Until next time,
I am still your host China. Bye for now.