When Six Feet Is Too Far

Rachel Barstow works every day to provide quality and caring education to students with disabilities and while promoting disability visibility. When the pandemic hit, Rachel’s center had to figure out how to adapt a tactile learning environment to a virtual setting. Rachel and the center were able to work in person even before vaccines thanks to the extraordinary efforts they took to keep their students and staff safe. Round table guests: Model, producer and Deaf advocate Nyle DiMarco and Shawn Ullman, Senior Director of National Initiatives at the Arc.

Learn more about Children’s Center for Communication: https://cccbsd.org

Learn more about The Nyle DiMarco Foundation: https://nyledimarcofoundation.com

Learn more about The Arc: https://thearc.org

Episode transcript: https://docs.google.com/document/d/1Pc7-VVf6-SWw90z8l4ESYq2h1YfqxUmSXNhZcMopUD4/edit?usp=sharing

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See omnystudio.com/listener for privacy information.

Episode Transcript

Speaker 1 (00:01):
Oh everyone, and Wilma VL Drama and I'm m r Raquel.
Welcome back to Essential Voices. Wilmer, You've been working on
such fun projects recently, What is up with you? I know,
have you? Have you checked out Encounter yet? Have I?
I've watched it twice already. I've even told my little
baby cousins to go see it, and everyone has been
super excited about it. Prove it so much fun being

(00:26):
being a part of that movie though. You know, it
was such an honor two b as to be part
of such a historic Disney film with such family and heart,
and you know, it really shows our our Colombian culture
in such a pure, meautiful light and we've never had
a moment like that in cinema, so it's pretty incredible
accomplishment and also a great invitation for so many people
that haven't discovered the culture itself. And you know, the relativity, right,

(00:49):
like how much we can really relate to this family.
I think that's that's what's really beautiful. That's so amazing.
I definitely felt that way about it as well. And
I mean the colors, the music, it I mean absolutely,
you know, when I went out to the premier and
you know, there was a surprise performance by Carlos Beavis
and our brain get straight up melted, you know. And
how about you, Mr, that's new with you? Well, one

(01:10):
thing that's been super nice, And I know it sounds
kind of cliche, but the weather here in the Bay
has just been magical. It's been raining and it's such
a gift whenever it rains here. I woke up one
day and looked out my window and saw that there
was fresh grass growing and it was so green in
my neighbor's front lawn, and I just got so excited
about grass. That's right, though, So what we got going

(01:35):
this week? So this week we're focusing on disability advocacy
and visibility, specifically for children with special learning and communication needs.
We spoke with essential worker Rachel Barstow, who's the education
director at the Children's Center for Communication, Beverly School for
the Deaf in Beverly, Massachusetts. Rachel shared with us how
crucial in person work is for her students and how

(01:55):
difficult this work became with COVID nineteen, but how through
innovative technologies to COVID nineteen protocols and lots of love
for their students. Their center was able to support their
children to thrive even during a pandemic. After a conversation
with Rachel, we'll have a round table discussion with now
the Marco, who is a model, producer, death advocate, and

(02:15):
founder of the Now De Marco Foundation, a nonprofit organization
that exists as a national philanthropic resource for all organizations, institutions,
and individuals working to improve the lives of every death
person in the world. And now is the first death
winner of America's next Top Model. You Better Work Now
are second round table guest is Sean Ulman, Senior Director

(02:39):
of National Initiatives from the ARC, a national organization that
promotes and protects the human rights of people with intellectual
and developmental disabilities and actively supports their full inclusion and
participation with the community throughout their lifetimes. It's going to
be a great show today, Yes, it definitely will be,

(03:00):
So let's do it up. Racial story starts right now.
My name is Rachel Barstow, I go by she Her.
I work at the Children's Center for Communication, Beverly School
for the Deaf in Beverly, Massachusetts, and I am the
education director there. So it's my responsibility to manage the

(03:21):
academic programs of the school and the supervision of teaching
and support faculty. One makes you passionate about your work
and maybe just share a specific memory or a moment
uh in which you said, you know, this is my life,
this is my calling. Sure, so I think that that
question is kind of twofold. When I first got into

(03:41):
the field of special education, it was working individually with
the students, who were very fortunate in this field, often
to work in very small classroom sizes because the needs
of the students are so unique and individualized. You really
need to be able to provide that one on one
support in the field of severe special needs. So it
was working with the students and seeing those moments of growth.

(04:05):
In special education, those moments sometimes aren't as frequent as
you might see in public education, but they're there. Our
students have the ability to acquire communication and knowledge, and
when they have those moments, when you see students communicating
for the first time, walking for the first time, it

(04:25):
is so absolutely rewarding. So that was the initial driver
coming into this field. The second, as I grew within
the field and became an education director, it was the
support of the teachers I love working with my teachers
and helping him in the classroom, seeing them grow as educators.

(04:47):
That's very rewarding as well. It's such a collaborative field,
particularly in our school, where on any child's team you
have up to fifteen professionals working for them. There is
always something to learn. Every day I learned something new
and it's very rewarding to be able to go every

(05:09):
day work with such unique individuals, work with such talented
educators and therapists, and know that we're making a difference
in some way. Can you tell me a little bit
about your students. Our school specializes in meeting the academic
and therapeutic needs of children who are ages three through

(05:30):
twenty two. Our students are deaf, hard of hearing or hearing,
and they have unique developmental in our communication challenges. In
that same coin, what are some of the misconceptions about
special education? I think the biggest one that comes to
mind is that individuals with disabilities aren't able to acquire information,

(05:52):
and that's just false. The reason why special education exists
is so that you can create a learning environment that
thus meets the needs of the students. They may not
be able to learn in a public school classroom with
twenty two children in the classroom. But they have the
right and the ability to learn information. They just need

(06:16):
accommodations and modifications that allow them to acquire that information. So,
when the pandemic happens, in having this challenges presented to you,
how were you all give it to pivot or some
of those solutions that you have to create. The field
of special education is hands on. It requires the physical

(06:37):
support of our students, modeling how to complete tasks and language,
as well as supporting and navigating their environment. So the
pandemic required special educators to take hands on field and
make it a hundred percent virtual. And so if you
ask a special educator about the past year, I believe

(06:59):
would probably say it was the hardest school year they've
ever experienced. And I would also say that parents of
students with special needs felt the same way. And so
to go back a little to kind of highlight how
challenging it was for our students and many students who
have special needs. So most of our students do not

(07:19):
communicate the way in which you or I do. They're
not verbal communicators. Half of the students in our program
use American Sign language and so those are the students
in our Beverly School for the Death program, in our
Children's Center for Communication program, most of our students have
limited verbal output or no verbal output, and they communicate

(07:40):
using what's called augmentative and alternative communication or a a C.
So a a C includes all the ways that we
share ideas and feelings without talking. So you use a
C when you use facial expressions or gestures instead of talking,
and through throughout the day, there's so many times in
which we communicate without talking. Some children and adults with

(08:05):
severe language deficits or speech deficits need more advanced a
a C. So some may use it all the time.
Others may use it just to clarify their message. And
these systems are very high tech, and so the A
C systems are students use. Consists of a tablet, so
you think of an iPad or a computer like device

(08:28):
that displays buttons. So they have the buttons all on
the screen. There might be four buttons, there might be
up to twenty buttons, thirty buttons. It all depends upon
their cognitive ability, their vision, their processing speed, so when
they select a button, it will speak for them. And
some students are able to isolate their finger and press
the button. Others don't have functional use of their hands,

(08:51):
so their systems are set up to a head switch,
so the device will scan their message and when they
hear what they want to say, they hit a head
switch and the message is spoken out allowed for them.
Others don't have the head control for it, so they
use eye gaze, so they stare at the computer screen
and when they see the button that they want to say,

(09:13):
they stare at it for about three seconds and it
speaks the message out allowed to them. When you think
about that level of communication need for a student, plus
physical therapy, plus occupational therapy, and when our students are
getting devices and using them, were modeling a lot. For them.
To take that and make it remote was the hardest

(09:36):
challenge we've ever faced, and it was done. I commend
my teachers so much for what they did. We provided
technology to students who needed it. We delivered switches and
equipment for those in needs. But it's a learning curve
to use that technology and that equipment, and so we

(09:56):
had to provide that to our parents. Our parents speak
game are teaching assistants, are therapy assistants supporting their children
while we supported them via zoom. What do you think
is one of the biggest challenges special education currently phases
At this moment, the biggest crisis right now is a

(10:18):
staffing crisis, just as across the country, there's a staffing
crisis in the field of education. Many people left after
the pandemic last year. Many people did not want to return,
and so now there's a mass staffing shortage in special
education schools and most of our schools are operating at
a thirty percent employee deficit, and because of that, some

(10:43):
programs have needed to close due to staffing. There are
schools that are residential programs for students with significant special
needs or behavioral challenges. Many of those have had to close.
Many of our students have severe health needs, and in
order to attend school, which I have a right to do,
they require a nurse, and there's a nursing shortage, so

(11:05):
they're not able to attend school if they don't have
a nurse. Are you aware some of the reasons and
why a lot of your colleagues and employees didn't come
back after last year. Many people reevaluated priorities and perhaps
that was a shift in what they were planning to
do with their careers right now. As an educator, it

(11:28):
is very difficult to watch the debates unfold um on
a national level about masking in schools, vaccinations, et cetera,
and the real fights that are unfolding between parents and
school boards about how to keep everybody safe. And that's

(11:50):
what it is about an educator. At the end of
the day, you just want to come and you want
to do your job, and you want to keep everybody safe.
And it's a lot for people to take. And I
think that is one of the reasons people left the field.
They're scared, or the mental toll, or that they needed
to care for their families. And now we entered this

(12:11):
delta variant spreading right, how are you keeping kids and
staff safe at school? And what are these conversations like?
So in October of was when we opened our doors
back up full time to our students, and that's when
we were told, you know, the most vulnerable population needs

(12:32):
to be serviced in person. You know, no disagreement of that.
What we needed to figure out was how we were
going to keep everybody safe, How we were going to
keep our staff and students safe. Six feet of distancing
does not exist in this field. You need to be
working side by side with our students. CDC said we
needed to use gowns, gloves, space shields. We had to

(12:54):
acquire all of that. At the end of the school year.
We spent over two hundred thousand dollars in COVID expenses.
Coming into this year, we learned a lot from last year.
We were still wearing masks this summer, so starting this
school year with masks is not something that was new
to us. Many of our students are not able to

(13:15):
wear masks, so all of our staff are wearing them.
We're going to continue with testing our staff on a
regular basis. There's some more financial support with that as well.
We are kind of keeping our school as a fortress
because it is our responsibility to keep our staff and
students safe. It's a great responsibility and it falls heavily

(13:39):
on the shoulders of our staff. They think about it
on a daily basis about keeping our students safe, who
are so vulnerable, who are easy to get sick. In
the trust that the parents place on us to keep
their students safe, so um it does not get lost
on us. The need to maintain those ealth and safety

(14:00):
protocols in the school, so we will continue with what
we did. You know when we opened up last year.
What can the community do to support the work you
are doing? How can we all be more of service
to you? I wish and my hope for my students
is that the community is more understanding of their abilities

(14:22):
and their contribution to the community, that the community becomes
more accessible for them. I wish that there were more
programs available to them once they leave our program at
twenty two, welcoming them into the work environment. And I

(14:42):
also hope that the community recognizes the work that special
educators do and educators as a whole, and there's more
value placed on that profession. I wonder what messages you
want to leave for future special education teacher and staff
as well as if you were to give yourself an

(15:03):
advice before you went into this pandemic, you know what
would that be. So I had a great mentor who
used to say, this is personal work that you can't
take personally. That's good, That's very good. It's very hard,
and my advice to my educators is to always ask
for help, always have those conversations, and take it day

(15:27):
by day. You know, we're educators, but we're learning from
our students, were learning from each other, and you can't
take it personally. And it's so hard, not too especially
after last year, but for the pandemic. I wish I
had just told everybody to breathe, to take a breath,

(15:48):
to focus on themselves, to care about each other. And
in education, we hear a lot what do you need,
and we hear I know I need some, but I
don't know what I need. So observing and supporting as
you go along and just continue to be the collaborative

(16:08):
environment that we are. Rachel, you are awesome, very very
proud that we were able to have this conversation. Thank you.
Speaking with Rachel taught me so much, especially when she
talked about the way that technology is being adapted for
children with special needs. I mean, the fact that kids
can communicate using technology that promotes augmentative and alternative communication

(16:34):
or a a C is so incredible. It really is.
I mean, I'm still thinking about the eye gays technology
that Rachel mentioned. The world of how we communicate, it's
getting bigger every day when we open up the boundaries
and possibilities of what communication looks, sounds, and and feels. Like, well,
that's a beautiful way to think about it. M R.
It makes me think about speaking spanguish or how with

(16:57):
people who you know really well. You know they cant
to what you're feeling just by how you look at
them or by reading a body language. So it's amazing.
It's amazing that a A C. Technology is translating these
non verbal ways of communicating with children. When we get
back from the break, we'll have a roundtable conversation with
Advocate and Motto now de Marco and Sean Ullman from

(17:20):
the Ark and we're doing something a little different on
Essential Voices this week. I'll be talking with Nile and
Sean by myself today in our roundtable conversation. Coming right up,
Nile and Sean, welcome to Essential Voices today. We're really

(17:40):
thrilled to have you both here for this conversation and
we're familiar with the work that you're both doing and
arts blown away by the advocacy and visibility you bring
for folks with disabilities. And to dive right into the conversation,
i'd love to know what your reactions are to Rachel's
story and Nile, let's start with you absolutely well, first
of all, thank you so much for having me um.

(18:00):
In reading this story, I was obviously very touched, certainly
for those folks out there who are working to better
the next generation of students and who are out there
teaching in a pandemic which is really scary. Every single
one of them uh in the school system is working
so incredibly hard, and I don't think we really could
never think them enough. But I do think in reading

(18:22):
her story that so many people miss that language deprivation
is a very real epidemic that impacts the deaf community,
specifically children, and so we have to focus extra hard
on kids with disabilities in general, but specifically deaf kids
who don't have access to that sort of environmental learning
at home. And oftentimes we spend so much time working

(18:43):
to build accommodations that in a situation like this, we
don't realize how heavy of an impact it's really going
to have. It's essentially a double whammy. Now more than
deaf kids out there have hearing parents who don't sign
with them at home, and so it's so incredibly clear
to us that we have to work harder to make
sure the kids are getting an adequate foundation in language

(19:05):
that they need in order for them to be ready
to succeed during school. But when school is their only
language access and that's taken away and they can't communicate
at home, I mean, it's isolating and it's horrifying. I
mean it takes a toll on your emotions, your mental health,
but as well as your physical well being, often the

(19:26):
feeling of isolation. And so it really was just even
more clear for me of how much the school system
really needs to be working essentially to a place where
students are able to find their own identity and are
able to foster a sense of community in a place
like the world that we're living in now, we really
need that. Right myself, coming from an all deaf family,

(19:47):
I felt incredibly normal and I felt like I could
do anything. But for so many of those deaf kids
who were stuck at home with your parents who didn't sign,
I mean, it's such an incredibly tough answer, and I
don't think that there is a perfect solution into it,
and I don't think anyone has the right answer. But
I think right now it's you know, stories like these
that really need to be contributing to the larger conversation.
M M, thank you so much. Nile. Yeah, there's a

(20:09):
lot to unpack there from what you're saying and what
you're talking about. In ensuring that students with disabilities are
fully supported in community and encouraged to learn in ways
that are fully set up for thriving is essential, and
so with the pandemic, this thriving has been in part
set back and also in other ways bolstered, as we
heard from Rachel in regards to all the amazing a

(20:30):
a C technology being used for learning at her center
and their center's commitment to making learning possible during even
the height of the pandemic. It's definitely a precarious situation
because students across all age ranges encountered certain deficiencies from
online learning due to the pandemic, though for other students
online learning was also super liberating. It's definitely not a

(20:51):
one size fits all situation, and especially for deaf kids
like you're saying, or for students with disabilities who may
require additional learning assistance that was not possible during the pandemic.
And I'm really glad we're having this conversation today, all
here together about some of the work that needs to
be done in educational spaces and for you, Sean, what
were some of your initial thoughts after spending time with

(21:12):
Rachel's story. Well, first of all, thank you also for
having me and I agree with everything Nile said, and
I think Ratchel really hit the nail on the head.
A lot of the things she talked about aren't exclusive
challenges to deaf and hard of hearing students, they were
challenges for all students with disabilities. The language component is

(21:34):
obviously incredibly important and especially unique to deaf and harden
hearing students, but so much of special education services and
supports our hands on and happens sort of in real
time and require flexibility and a need to sort of
adjust on the spot to whatever the student is or

(21:56):
isn't picking up and being able to see that in person.
You know, with the pandemic, a lot of schools weren't
requiring students to have their videos on, so how could
teachers even know whether the student was in the room,
no less whether they were actually understanding what the teachers
were trying to teach. And that was for all students,
a particular challenge for students with disabilities. So I think

(22:19):
a lot of the issues that Rachel raised were really
spot on. For all students with disabilities. Thank you. Yeah,
what you're saying is so true. I mean, how would teachers,
even though if their students were in the room, if
their cameras were off. You know, I was fortunate to
be working remotely on interview and recording projects, really fortunate
during the pandemic and um recall situations where colleagues and

(22:41):
I had the privilege of having you know, what we
call zoom fatigue, or I actually like to call it
the zoom toomb um. And at times I didn't want
to have my video on. But thinking back the times
that I had my camera off, I was definitely less engaged,
and maybe I was multitasking because for me, I know
that I had orb a lot from facial cues from
eyes even through a screen, especially if I can't physically

(23:04):
be in the same room as the folks I'm I'm
in conversation with. So for students with disabilities who are
non verbal and or communicate via a c as Rachel described,
being in the classroom is essential, or if not in
the classroom, at least with video on and support present
at home. But not every kid has a luxury, and
so Nil I'm wondering if any of this contributed to

(23:25):
you starting your foundation, the Nile de Marco Foundation, or
what what did inspire you to start your foundation? Absolutely? Um, So,
advocacy has always been a really huge part of my upbringing.
But I certainly wouldn't have called myself, you know, so
much of an advocate as much as a community member
who very much believes in cultivating our sense of community

(23:49):
and our culture. But a lot of that had to
do with growing up in essentially a utopia. You know,
I grew up in an all deaf family, but I
did go to a deaf school in New York City
that ad hearing teachers and here administrators and as superintendent,
and seeing that sort of experience, my mother wanted to
work against the school system to improve the state of

(24:11):
education for deaf kids. And she met with the superintendent
with the school board and she said, listen, you have
to empower deaf people to not only become educators, but
to lead the curriculum here and again she was turned down. Again,
she was turned down, and again she was turned down,
until finally she decided, We're going to move to literally
the other side of the country, to Texas for a

(24:33):
better education, and that really instilled something in me. She
planted to see that I think brought me to reap
the benefits of having an identity and certainly being able
to stand up for what I knew and believed was right,
and led me to a place like America's sext model
and into with Stars and now producing where I do
have the platform essentially to share what my mother had

(24:54):
instilled in me and really try to change and shake
up the foundation of what are community is currently facing.
But to me, honestly, it all started with my mother. Wow,
that's so amazing to hear about your mom and that
she inspired you is really moving. Um. Are you open
to sharing a little bit more about your mom? Yeah? Absolutely,

(25:14):
My mom is uh my mom, I mean amazing. I
don't know, Can I just say amazing. She raised three
boys as a as a single mom, and I think
just did such an incredible job. She was teaching as
L classes to the NYPD when we were kids for years,
essentially to improve the experience of deaf people with basic

(25:36):
traffic stops and parking in fractions. And my mother really
taught so many people more than just a s L,
but taught them the basics of our culture and our
community while also maintaining three boys at home. I mean,
she's I don't know, I could talk about her from work.
She's my whole world. All of us here essential voices
are super close with our moms too, So this is

(25:57):
just beautiful to hear. It's beyond inspiring that she wanted
to make sure that you were safe should you ever
encounter yourself at the hands of police brutality, which, as
we all know, escalates to violence or death all too
often in situations that shouldn't have even happened in the
first place. She really sounds like an incredible mom. And
turning it over to you, Sean and your work with
the ARC, how did you first get involved with the ARC, Well,

(26:21):
I think it's very unfair to make me follow up
that story. So the ARC, to provide a little more background,
is a national organization with chapters throughout the country that
advocates on behalf of people with intellectual and developmental disabilities.
And I am one of the few staff persons at
our national organization I who didn't come to the mission

(26:44):
with a personal or family connection. I always wanted to
have a job working with children when I was younger
and after law school or during law school, I took
heart in a clinic where I was able to advocate
on behalf of a student with the disability, and that
for it into a career. So I spent fifteen years
representing students with disabilities and their families and seeking the

(27:08):
special education services and supports that they needed. And that
brought me to the ARC about six years ago to
support our chapters who offer that kind of education and
support to students with intellectual and development disabilities and their families. Wow,
that's awesome that due to your work as an attorney,
you wound up representing students with disabilities, and then it

(27:29):
sounds like doing so became a passion for you and
you've stuck with it. The ARC sounds like an amazing place,
and I'd love to know more about some of the
specific programs and initiatives that the ARC offers. Gosh, we
have so many. Uh. Sort of following up on what
now said about criminal justice, UM, Individuals with intellectual and
development disabilities also frequently have encounters with law enforcement that

(27:51):
don't go well. UM. Many people may remember the individual
with autism in Florida whose dedicated support worker was actually
killed because they didn't under sham that the individual was
having a bad day and he just needed his staff
person to be able to calm and down. And you know,
I'm aware of you know, deaf individuals who have found
themselves being at the bad end of a gun because

(28:13):
the officer didn't realize they couldn't hear them. So we
have a program called the National Center on Criminal Justice
and Disability, which seeks to educate law enforcement professionals including
public defenders, prosecutors, police officers, crime services victims, judges, um
and then of course people and their families about how

(28:36):
to ensure the criminal justice system is more fair and
more accessible to people with intelectional and development disabilities. So
that's a program we have that's really great. One of
the programs I lead is called the Center for Future Planning,
and we provide education, create resources, do trainings to educate
people and their families and professionals about the need to

(28:59):
ensure services and supports are available over a person's lifetime,
including after their parents or primary caregivers no longer available,
which is a very big challenge for people with intelectional
developed disabilities who are living with older caregivers, and a
lot of them are the estimates are around more than
a million people with I d D live with a

(29:20):
caregiver over the age of sixty five and don't have
any idea of what they're gonna do, where they're going
to live, what their services are gonna like when their
parents is no longer available. So those are a couple
of our programs. I'm really excited about that. We have many,
many more. We'll be right back after this break. Welcome
back to Essential Voices. Thank you for sharing a bit
about all these incredible programs. Sean, the program that you

(29:43):
lead the Center for Future Planning, ensuring that lifelong support
is available is super critical and shows how invested the
ARC is to supporting folks at all stages of life.
And turning it over to you, Nile. What programs does
the Nile de Marco Foundation have to support deaf children
and their families? I revolutely. One of my passions has
always been working to support the end of language deprivation,

(30:07):
and out of that, we have the opportunity to partner
and work very closely with an organization called lead K,
which is Language Equality, Acquisition and Development for Deaf Kids.
We've worked together to write legislation that's been passed at
a state level that ensures that all children were born
deaf or experienced deafness or our hard of hearing have

(30:27):
a foundation language by the age of five. And we
do that by establishing benchmarks in the ages of zero
to five. And I believe we've passed it so far
in I want to say, eighteen states, which is really fantastic,
but it is still very much slow moving. We're getting there.
We'd like to see it passed on the national level
sooner than later. But once it's passed really across the US,

(30:51):
we want to see what that looks like for deaf kids.
We want to see them supported in every possible way
and ensuring essentially that they have a nation and language
before that critical language acquisition window in the mind closes.
We've seen without it, then not only are their speech
plays but also um social delays. There's also brain damage
that we've seen occur through various studies that have been done.

(31:14):
And so every year the kids were you know, lucky
to be under this legislation are tested and are checked
to see which when they're doing better in whether that's
American Sign Language English, and we develop a timeline essentially
for early intervention or deaf mentorship, which is fantastic. Are
trained deaf mentors are able to take a look at

(31:35):
the child's development and see how they're acquiring language and
also develop new structures and systems to provide them even
more support. So very much about accountability, but also very
much about being able to, as Sean mentioned, sort of
work in the moment right and make those decisions essentially
so that we can provide them everything that they need

(31:56):
to be ready and learn and grow by the age
of five. If that answers your question, wow, now that's
totally amazing. And the work that you're doing circles back
to this word that you used earlier that I keep
thinking about utopia and how you feel like you had
the blessing of growing up in a utopia, but how
so many other kids don't get to have that experience,
especially when it comes to the language component that you're mentioning. Now,

(32:16):
it's definitely not the same at all, but it kind
of reminds me of why I feel so blessed to
have learned Spanish at home from my mom, because having
the language access makes me feel super connected to my
Latin or Latin X community and allows me to work
more closely with folks for my community who are monolingual
Spanish speakers, which goes back to Rachel talking with us
about A A C communication and broadening the ways in

(32:39):
which we think about communication at large. And so the
work that you do with your foundation, Nile, and the
work that you're doing with the ARC, Shawn, are actively
working to create this utopia for all kids who have disabilities.
And it's really beautiful to hear about today. Thank you
so much, and for both of you working every day
in these fields. Do you notice any misconceptions that the
general public has about working with special education or within

(33:01):
disability advocacy? Sure? Well, I actually think that Rachel covered
the biggest one and her story, which was that students
with disabilities aren't as capable as students without disabilities. And
again the fact is that almost all people with disabilities,
including people with very significant medical disabilities, physical disabilities, intellectual disabilities,

(33:24):
hearing and vision disabilities, are able to accomplish the same
things that all people can accomplish, as long as they're
receiving the services and supports they need, whether that's language access,
whether that's nursing care, whether that's speech or occupational physical therapy,
whether it's you know, extra time on a test or

(33:45):
access to an interpreter. So I think that is by
far the biggest one. I think a second one that
I would add in the education space specifically, is that
the services and supports that students with disabilities somehow distracts
from or interferes with the education of students without disabilities.
And while there can be students with challenges that are

(34:08):
so significant that being in their regular education classroom isn't
really the right fit for them because they can't get
their needs met and maybe they are too distracting. That's
very rare and much less common than people might think.
And it's sort of like the curb cut effect, which
now everybody loves, right because you can easily get your
kids stroller down the sidewalk, or if you're you know,

(34:30):
pushing a cart from the grocery store, you can easily
get up the curve and cross the street. It's the
same thing with the services and supports systems with disabilities
get in school. A lot of the services and supports
that they get the way that information is taught just
slightly differently, maybe a little more concretely, maybe a little
more hands on or with a little extra focus on

(34:51):
a particular area or a little extra time actually benefits
all of the students in the classroom. So I think
that's another common misconception about special education services and students
with disabilities that I would want people to know. Thanks
so much for sharing your thoughts on this, Sean. Now,
do you have anything you'd like to add? I do
think it's a little bit of a tricky question, certainly

(35:11):
surrounding special education. Every year, I feel like we get
a new bill that supports, you know, a more integrated
classroom right into a public school. And I mean, I
think the obvious perspective is to assume absolutely right, leveling
the playing field is what we see, and personally I
think it's good to yeah, But at the same time,
for my own community, I know that working in a

(35:32):
different language requires a different learning style or is indicative
of a different learning style often, and we're seeing deaf
schools shut down across the United States, which is putting
a lot of these students into mainstream programs. And I
don't know that that's the best answer, and I don't
know that it's the most conducive environment for a deaf student.
To be able to thrive and sort of garner that
sense of community. I am a big proponent of schools,

(35:56):
essentially with mainstream programs creating programs specific for deaf kids
that give them a chance to sort of experience a
little bit of the utopian that I had. But having
a student working with an interpreter as an accommodation in
a standard classroom, I do think does rob them to
some extent of the larger experience. But I do think
as a general community of disabled people as a whole, absolutely,

(36:19):
we definitely want to see more integration in a classroom
and we want to see, as Sean said, that sort
of universally designed curriculum that does benefit all students in
that setting. Thanks so much, Nile, and your last comment
about making accommodations universally accessible, I think teases out this
thread of representation and visibility and the media that ties
into making accessibility a possibility across a variety of fields

(36:43):
and platforms, not just in education, like we're here talking
about today. Given that we're producing media with the show,
and that Wilmer works in the entertainment industry, we often
talk about what representation means and looks like for communities
that have been minoritized or marginalized. And since you're in
the industry Nile as well and were involved with Netflix's
show def You, I'd love to know what your goals

(37:04):
were regarding representation visibility while working on this project. Wow. So,
I mean it really goes back to my own experience
in the modeling industry and then working on Dancing with
the Stars. After that, I had books, auditions and meetings
with writers and meetings with directors, which is fantastic, and

(37:26):
it was always the topic about the role that really
left some questions sort of unanswered. What I found was
that writers and actors and directors would say, you know,
we would love to write you in this is you know,
this is great, we'd we'd like to see you leading
this or this can be a really good fit. But
the yes and know was that they didn't really know

(37:47):
how to write me in, and finding a deaf writer
was not an easy task. That was when I started
to realize, of course, these are people who want to
work with me and want more exposure, but it's currently
not available. You know. I went to the world's only
deaf university and Golde in Washington, DC. It was a

(38:07):
fantastic experience, and I knew how many talented people were
there from all over the world, and to me, it
just made perfect sense. You know, people go from deaf
families and from hearing families, and from countries that don't
have a formal sign language, people who have no experience
of of deaf culture or community. And when I had

(38:28):
the opportunity to work on Deaf Field, I realized that
this was the best place to do it. Like I
mentioned before, there is in fact no one right way
to be deaf. But this was also a really great
way to spark ideas in the Hollywood and to show
the very layers and the diversity that we carry in
our community. So I'd say that was probably the biggest goal.

(38:48):
Where would you hope that death representation and visibility in
the media will be in five years or maybe another
way to ask this is what kinds of projects excite
you that you want to be working on well with
deaf you We had a really rare opportunity, which was
to create a place for not only cast but crew

(39:08):
to work on a project that would be so groundbreaking.
Oftentimes there's no deaf writers in the room, there's no
deaf Camerman, and we completely changed the game. I'm so
incredibly grateful to Netflix for really believing in the idea
and really believing in empowering deaf creators. We were able
to set up an actual ratio and work with people

(39:30):
in the community both in front of and behind the camera.
What I'd like to really see in five years is
to see those people writing the films that I'm seeing,
creating and producing and telling the stories, but also having
their own projects. We'll be right back after this break.
Welcome back to Essential Voices. Thank you so much, and
I can't wait to continue seeing the projects that you're

(39:50):
involved with and to bring us back to our Essential Voice.
This week, Rachel and to the pandemic, which was a
big portion of her conversation with us. She explained how
many extra hurdles the pandemic put in place in order
to get her students what they needed to learn and
to thrive during this time. And so for you, Sean
with the ARC, can you give some insight as to
how the pandemic affected the community of folks at the

(40:12):
ARC support and how the pandemic affected the work that
you were doing. Sure, I will say that there are
certainly some students with and without disabilities who actually thrived
during the pandemic, the fewer distractions from the classroom, the
lack of social pressures that can sometimes make the learning
environment actually harder for some students, particularly students with anxiety

(40:35):
or mental health or behavioral challenges, may have found learning
at home with extra support from family actually better than
going to school and being in the classroom. But I
think that the needs and the challenges that Rachel describe
were much more common, and I think that most students
with disabilities really struggled with learning during the pandemic, and

(40:57):
things like accessing their services and supports. You know, occupational
and physical therapists tended to have to train parents to
provide the services that they used to train, and not
all children had a parent are an adult at home
who could do that, so some students just went completely
without any services at all. I think that I think

(41:20):
you mentioned this previously, So kids with disabilities tend to
be behind academically their peers without disabilities sort of pre COVID,
so we don't know for sure, but there appears to
be some good evidence that they've now fallen even farther
behind their typically developed peers. And I think one of

(41:40):
the main challenges for the school year and likely for
many years to come, is figuring out how to make
up for that last time for students with disabilities so
they don't find themselves at a disadvantage sort of in
the longer term of their lives. For you. Now, you
mentioned attending both a public school and a deaf school
growing up. What programs and support should be established at

(42:03):
public schools to set deaf students up for success As
a fall up to this, were there common threads that
you observed in how remote learning and the pandemic impacted
deaf students in particular. So I do think that public schools,
certainly running a deaf program is always a benefit to
a deaf student, But I think what is so important

(42:23):
is that it's run by deaf people. You see hearing
people oftentimes really with no cultural um competency and really
no knowledge of our community leaving these deaf programs, and
what we need to see is more role models that
are providing feedback for these students and allowing them to
express themselves in radically creative ways. Um, you know, what

(42:45):
we'd like to see is more deaf people empowered to
be educators and change makers in schools, I think, but
as well, public schools should be teaching ASL is a
foreign language like Spanish or French or German. Certainly, if
you have deaf kids attending to your school, it would
make sense and seem obvious that you would have that

(43:06):
in your school so that students could communicate with their peers.
I think those are probably the two biggest things. Don
always stick out to me, but I do think it's
someone obvious. You know, deaf kids hate online learning especially.
I mean, I don't think anyone is really passionate about
online learning, but certainly in a mainstream program it makes

(43:26):
it even harder for me and my family. Working with
masks is really tough. Um. I actually asked my brother
just recently, who is an educator at a deaf school,
asked him at the mask, and he said, it is so,
so tough because so much of American siglaguag is on
the face and creating this barrier to essentially half of
our language is it's more of a guessing game than anything.

(43:48):
And I think, like everyone else, we're just looking forward
to a safe end to this pandemic. Sean, can you
explain how Biden's infrastructure plan, the Build Back Better Plan
will support Folks with disabilities UM, with a disclaimer that
I'm not on our policy team, so this is not
my area of expertise. That I am was certainly aware

(44:09):
of the work that we're doing UM and the education space.
The Build Fact Better Act doesn't have a lot of
funding for education, and one of the reasons for that
is because so much funding was dedicated to education during
the COVID relief bills and states are still figuring out
how to spend that money in the best way for
their particular communities. There is funding in the bill for

(44:33):
teacher training, so that's really important. There's a real shortage
of special education teachers, and if states are able to
use that money to train more teachers that will be
particularly special education. It's for all teachers, but if they're
able to use, you know, some of it to train
special education teachers, that could go a long way and
addressing the special education teacher shortage. And then there are

(44:55):
also funds and there for inclusive healthcare and preschool programs
to ensure that children with disabilities have an opportunity to
participate in childcare in preschool settings with students without disabilities
to the extent they want to and are able to.
So those are two important things that we're advocating for

(45:16):
around education, but some of them more um the bigger
and more challenging opportunities that were advocating for are around
services and supports for adults with disabilities and the two.
There's a lot of things, but the two main things
are for additional funding for what are called home and
community based services, and those are services that are funded

(45:40):
through the federal Medicaid program. And almost all individuals who
receive sort of long term, lifelong supports, whether it's sharing
the day at a job in their home, that's funded
through home and community services and Medicaid, and there is
an incredible shortage of services across the country. There are

(46:01):
an estimated eight hundred thousand people on the waiting list
to receive those services, so right now they're getting certainly
not what they're eligible for, and a lot of people
nothing at all. And then there's also a huge um
like the crisis with nurses that Rachel mentioned and the
crisis with special educators I just mentioned, there's also a
crisis with direct support professionals and thinking about the hands

(46:24):
on supports that students might need in school. A lot
of those supports continue into their adult years and again
if they're able to access the services, they tend to
be through Medicaid. And the people who provide those services
are called direct support workers or direct support professionals, and
the pace quite low. It's not the most glamorous of jobs.

(46:44):
And the pandemic made it even harder to recruit people
to do that work because it is impossible to do
at six feet and so there's a real need to
improve the pay, increase incentives to hire to train individuals,
and then also to make more services available to get
people off the waiting list. And so those are that's

(47:04):
one big thing, and then the other is paid family
leave UM, which is also included currently in the bill.
And you know a lot of caregivers of both children
and adults with disabilities often find themselves needing to leave
the workforce if their loved one has a serious medical
crisis or you know, loses their day or employment services

(47:25):
and is at home and can't be at home alone.
But also other things like you know, not being able
to take a promotion, not being able to move for
a job, having to cut back hours going to part
time where they lose some of their benefits. So having
a paid family leave plan is really important for caregivers
of people with disabilities to be able to remain in

(47:46):
the workforce while caring for a person with disabilities. So
those are the two biggest things that we're advocating for
in the legislation. How can the community support the work
that you're both doing and Sean, let's start with you
and the work that the art does well. I would
echo what Racial said in her response to this question,
wishes it would go a really long way to support

(48:07):
people with disabilities if the community, other parents, other students
were a little more understanding of disabilities and a little
more accepting of disabilities and differences. And also just if
there were more programs and supports available for people with disabilities,
but sort of specifically on actions that people could take

(48:27):
right now, you know, contact your congress person to tell
them to support the provisions and the build back that
our act that will make sure that people with disabilities
have access to the services and supports they need. The
ARC has a program called the Disability Advocacy Network that
you can join and get alerts from us to stay
on top of the sort of important policy issues that

(48:50):
are frequently coming up for people's disabilities, so people can
sign up there, and then I guess specific to education,
states and school districts received a lot, mean a historical
record amount of money from the federal government to help
with COVID relief, and each state had to submit a
plan that was approved by the federal government on how

(49:10):
they were going to spend those funds, and families who
want to know what their states are supposed to be
doing can find that information available on you know, the
state Department of Education's website, and you know, make them
do what they said they're going to do and make
sure they're including students with disabilities in their efforts. Thank you,
Those are all really great suggestions. And Nile, what about you?

(49:30):
How can the community support the work that you and
the now De Marco Foundation do? You know? Of course
we need more allies in every corner. But again, just
to repeat it's so important instead of taking the megaphone
to amplify the voice that people from the community right, certainly,
contributing money is fantastic to organizations like lead k and

(49:52):
Man Foundation. It's certainly not cheap, but like what Sean
mentioned this is state level legislation and those states representatives
that you can contact, but also following us on social
media and following creators on social media and organizations like
lead k that are putting pressure on these states. Right,
those numbers do support the change in in bills. It

(50:14):
was I would to say, three or four years ago
in Texas that we didn't have enough people showing up
on the day of the decision and the bill failed.
This is something that as American people we do have
to put pressure on, but it does take time. So
join us. Such beautiful conversations today all around, don't you think, Wolmer? Absolutely?

(50:35):
I love now thinking behind death View and how it
was important to hand the death folks you know, tell
their own stories, both in front and behind the cameras.
And it also reminded me of our conversation with Karmen
Carrera and how much we benefit when more people are
in the room. Yeah, me too. Also, as someone who's
super close with my mom, I adored when Nile shared

(50:57):
about his superhero of a mom who taught a s
L two local law enforcement officials when he was growing
up talk about being a fierce advocate working on making
her community a more tolerant, just and compassionate place. I
know we're real mom as kids over here. You know
I love my mom more than anything. It also was
so cool to hear that Sean was doing similar work
over at ARC. So honor to have spoken with Rachel

(51:19):
and that you had the opportunity to speak with Nile
and Sean. For more on Nile, follow him at Nil
di Marco and check out Death You on Netflix. Also
visit the ARX website at the Arc dot org to
see how you can support their initiatives. Essential Voices with
Wilmer val Drama is produced by me M R. Raquel,

(51:41):
Alison Shano, and Kevin Rotkowski, with production support from associate
producer Lillian Holman. Executive producers Wilmer Val Drama, Adam Reynolds,
Leo Clem and Aaron Hilliard. This episode was edited by m. R.
Riquel and Sean Tracy and features original music by Will
Risotti spe Auctile. Thanks to this week's Essential Voice Rachel

(52:02):
Barstow and to our thought leaders Nil DeMarco and Sean
Almond from the ARC. Additional thanks to Gray van Pelt,
Sammy Housman, Megan Trevino, and Kristen Wright. This is a
Clamor and w V Entertainment production in partnership with I
Heart Radio's Michael Dura podcast Network. For more podcasts from
I Heart, visit the I Heart Radio app, Apple podcast,

(52:24):
or wherever you listen to your favorite shows.