2B —Thursday, April 5, 2018
b-side
The Michigan Daily — michigandaily.com
Advocating for disability and inclusion in the arts
The
presenting
theme
of
the arts in 2018 is by and large
inclusion. We saw it in the recent
90th Academy Awards when
a jittery Frances McDormand
fierily
advocated
inclusion
riders to a crowd of hesitant yet
emphatic cheers. The Grammys,
in typically uncanny fashion, had
a few cutesy symbolic gestures
of their own and brought out
rapper Logic to preach mental
health awareness.
Despite
Logic’s
inevitable
corniness, and the faintly musty
smell of the Oscars, there was a
sense that these organizations
cared — or at least wanted you
to know that they cared — about
representing diversity.
There is a difference, of
course, between the portrayal of
inclusion and actual inclusion.
People who have any sort of
difference from the norm might
be portrayed in film or in music,
but whether they’re actually
included within the process of
the art making is an altogether
different question, and one that
varies community to community.
For people with disabilities,
the question of whether they’re
included
in
art
making
is
almost always answered with a
dismissive “no.” While people
with disabilities make up nearly
20 percent of the U.S., they’re
rarely included in the arts. A
survey of 900 films from 2007-
2016 found only about two
percent of characters have a
disability, and overwhelmingly
those who do are portrayed by
an able-bodied person.
Take the Oscar winner for Best
Picture this year, “The Shape of
Water.” The film follows a mute
janitor who falls in love with a
mythical sea creature. Because
of her disability, the character
speaks in sign language. The
character was portrayed by
Sally Hawkins, an able-bodied
actress, and she spent months
training with an American Sign
Language teacher for the role.
Disability-rights
advocate
Susan Fitzmaurice said in an
interview with The Daily that
the portrayal missed a crucial
detail.
“As the movie went on, she
looked at her hands. Nobody
who signs looks at their hands.
That became a real distraction
for me. It’s a great movie, but
that one piece was a distraction.
And for people who were deaf
or mute, it became an extreme
distraction,” she said.
Fitzmaurice is particularly
interested in the intersection
of arts and disability. For 10
years she has been a volunteer
for VSA Michigan, the state
chapter of the international
organization that focuses on
arts and disability. VSA, or
Very Special Arts, was founded
by Ambassador Jean Kennedy
Smith and is a department in
the John F. Kennedy Center
for the Performing Arts. VSA’s
website explains their mission
is “to create an inclusive society
where people with disabilities
participate in, learn through,
excel in and enjoy the arts.”
Because
disability
can
take
many
forms,
VSA’s
advocacy and consulting do
as well. VSA teaches artists
how to get involved in the
disability community, and it
teaches
teachers
interested
in incorporating art into the
classroom how to interact with
a student with a disability. Many
of these teachers have never
received any kind of disability
training.
VSA Michigan works with
professional artists too, putting
on
exhibitions
and
local
workshops around the state.
Fitzmaurice’s
work
with
the organization is focused on
accessibility. She makes sure
the venues are accessible for
events the organization puts on,
visiting and testing each facility
in person. Because Fitzmaurice
uses
a
wheelchair
herself,
she said she can recognize
the details that well-meaning
facilities might simply overlook.
“I open a lot of eyes. I think
a lot of people think about
disability in terms of what
they can see, and they don’t
think about the little stuff,”
Fitzmaurice said. She gives an
example by shaking the table at
which she’s sitting.
“Like how distracting it is
if you have a table that moves
around, and you have a kid
that’s really distracted with
movement.” She shakes the table
again.
“You
want
them
to
pay
attention and you want them to
interact with the art, and instead
all they’re thinking about is
that this table they’re sitting at
is moving. They can’t focus on
what the art is trying to do; they
can’t focus on what the teacher is
trying to tell them to do. They’re
focusing on this table that’s
moving,” Fitzmaurice said.
Fitzmaurice
is
passionate
about ensuring people with
disabilities have equal access to
art because she said it offers them
the ability to express themselves
in nontraditional ways. Art can
be different, she said, as long
as it speaks to you. People with
disabilities can feel liberated
in creating things that don’t
necessarily look traditionally
beautiful, because it speaks to
their
individual
experience.
People with disabilities can
communicate through this form
of expression.
“It’s OK that your art doesn’t
look like everybody else’s art.
Art may be perfect for who you
are. And just that can inspire
people to look at it,” Fitzmaurice
said.
She points to a painting that
sits atop a bookcase, a red and
orange abstract expression.
“That was painted by an
elementary-school student who
had a disability. I walked in,
it spoke to me, so I bought it,”
Fitzmaurice said.
VSA
Michigan
assists
in
all forms of art. That means
painting, but also film, music,
performance, etc. She gives
the example of an after-school
rap group they worked with in
Hamtramck and a young soloist
program they have.
While
VSA
Michigan
sometimes
finds
professional
artists with disabilities to work
with
students,
Fitzmaurice
said it’s difficult because these
systems aren’t currently in place
in public education. Students
with disabilities are rarely given
the opportunity to participate
and pursue art at a young age,
and so people with disabilities
are not always well represented
in the arts community. Most
of those who go on to have full
careers in art, she said, are in
film.
Nic
Novicki,
an
actor,
comedian
and
producer,
understands the nuances of
being a person with a disability
in the film industry. From early
on, he learned that to have
a fulfilling career in film, he
needed to carve his own path.
“I think the fact that I was
producing
my
own
content
gave me the experience that
traditional Hollywood wouldn’t
have given me,” Novicki said in
an interview with The Daily.
For Novicki, his extensive
résumé of producing is what
got his foot in the door for
major roles, like his first on
“The Sopranos.” He started
doing stand-up comedy while
in business school at Temple
University and began writing
and directing films, including
“A Little Broke,” which was
acquired by ShortsTV. Once
he had that experience, he was
able to land other TV roles, like
his critically-acclaimed work
on
“Boardwalk
Empire”
as
showman Carl Heely. Like any
other actor, he said, it took years
of consistent progress to get
work in the industry.
Producing content also meant
writing and portraying the roles
Novicki wanted to play rather
than roles that were focused
solely on his disability.
“As a little person actor, it
can sometimes be hard to find
roles that aren’t so focused on
the disability itself. But in doing
my own work, I’ve been able to
allow people with disabilities,
even beyond myself, the role of
the lawyer, or the bad boyfriend,
or the good boyfriend, or a
gangster,” Novicki said.
Realizing he was in a position
to change the narrative of people
with disabilities in film and TV,
Novicki worked with Easterseals
— a national organization that
advocates
for
people
with
disabilities and of which Novicki
is a board member — to create
the Disability Film Challenge.
For a span of 55 hours over the
weekend,
participants
write,
film and produce a three-to-
five-minute short film. A winner
is selected at the end of the
competition.
While actors are certainly
involved, Novicki is focused on
getting people with disabilities
behind the camera too. It’s
the lack of representation in
the entire film set and not
just on screen that accounts
for
misrepresentation
and
stigmatization of people with
disabilities, he said.
Winners of the competition
include Jamie Brewer, an actress
with
Down
Syndrome,
best
known for her acclaimed work
in “American Horror Story,” and
Dickie Hearts, a gay and deaf
man whose winning short film
“Passengers” went on to win
HBO’s Project Greenlight digital
series competition in 2015.
The aim is to get the film
industry
and
the
disability
community working together.
According to Novicki, filmmakers
and industry professionals often
come to the festival to get people
with disabilities involved in
their projects. For people with
disabilities, it offers a chance
to get their name recognized,
meet other filmmakers and gain
experience in an industry that
is not always easy to break into
without an extensive network.
Every time my older sister
Lauren would shower, she’d send
vibrations into my quiet room,
drowning the space with a loud but
angelic voice. There’s a home video
of her at three years old, singing
absolute nonsense to herself on the
beach. She has always had some
type of leading role in every school
musical, and she could always
flawlessly take any note up an
octave. Since I can remember, my
sister has always been singing.
By the time Lauren was 14 years
old, she was studying classical
music and taking opera lessons.
Four years later, she played
Carlotta in our high school’s
version of “Phantom of the Opera,”
and she even had a senior solo at
an awards ceremony, where she
sang “Caro Nome” from the Italian
opera “Rigoletto,” by Verdi. Shortly
after, she went off to Penn State to
study speech pathology, and there,
she found herself joining singing
groups like a contemporary co-ed
choir and an all-female gospel
choir.
Her talent and passion for music
haunted her, however, and it was
toward the end of her freshman
year
when
she
decided
she
would leave Penn State to pursue
studying opera. Lauren’s future
was changing, and it was well-
structured, promising and bright.
In the summer of 2013, Lauren’s
glistening future was called into
question when a fluke dive into a
black-bottom pool caused her to
be paralyzed from the nose down.
Her singing was, momentarily,
pushed to the side. Just trying to
scratch her nose became her first
challenge among many.
Through the past five years,
Lauren has overcome a sea of
adversity in her journey to recovery.
From not being able to feed herself
to now being able to lock her
own knees (the most important
feature
of
regaining
walking
ability), Lauren is, literally, steps
away from walking and gaining
different forms of independence.
Even with her dedication to
physical recovery, her passion for
singing has made a way into her
paralysis. Nonetheless, singing as
a quadriplegic is a completely new
experience from her pre-accident
voice.
A physical hurdle that comes
with singing as a quadriplegic
is lung capacity and abdominal
control
—
operatic
singing
demands a great deal from those
areas. She mentioned the difficulty
of breathing deeper while sitting
and trying to tighten the abs to
extend a note. Due to the height of
Lauren’s injury (her C-6 vertebrae,
just at the base of her neck), these
areas of her body were weakened
and, therefore, needed to be
re-trained.
“There’s less fluidity. I have
to really think about my body
much more, which makes singing
almost like a workout,” Lauren
told me. “When you’re paralyzed
at the level I’m at, my core and
legs are affected by the type of
paralysis that I have. I have been
lucky enough to regain function
and sensation in that part of my
abdomen, but you never realize
how physical singing is until you
don’t have a fully-working body to
sing in.”
Despite
physical
hurdles,
there are mental and emotional
challenges Lauren has faced when
trying to present her talent. She
highlights that one of the main
struggles was trying to be less
critical of her current voice, which
has become less powerful and
full due to the lack of abdominal
control. She has had to overcome
the stress of being in a unique
spotlight: an opera singer in a
wheelchair.
“Mentally, I’m trying to get over
that personal criticism. I don’t feel
like I’m as good … There’s a fear
around performing or not wanting
to be seen in a vulnerable way or
perceived as untalented,” she said.
“Even with singing, and going
on stage performing, there are
limitations to parts you can play or
pieces you can sing … it’s stressful.”
However,
Lauren
is
an
innovator and an explorer. She
enjoys seeing what her body can
do as it’s paralyzed. She mentioned
how singing for her is still freeing
— singing from her chair, in the car
or during rehabilitation workouts:
“I’m more inspired to sing just
for fun, even if I’m judging myself,”
she said. “There are so many
emotions that can be processed
when you have any event happen
to you like a spinal cord injury. Art
is an amazing way to process those
emotions.”
She is familiar with this idea due
to her inspiration from other artists
in the disability community. She
reminisced with me about the time
she met Ali Stroker, a quadriplegic
performer who was the runner-
up on “The Glee Project” in 2012
and made history as the first-ever
Broadway actress in a wheelchair.
Lauren also mentioned her love
for Andrea Bocelli, the wildly
talented and famous Italian singer
who is blind. She believes that it’s
people like Bocelli who are “giving
visibility to the disability, and that
there are things that need to be
said and need to be heard” within
the art world.
Other than Lauren’s almost-
achieved goal of walking again,
singing is something she still sees
in her future. She reflected on the
idea that opera has always been a
part of her and a part of our family,
and she wants her talent to stay
close to home as a hobby.
“I love singing, and if anything,
I think it would be cool to make
your own beats or sing over
your own track
— some form of
creative expression,” she said. “But
ultimately, I think opera is such a
niche genre, so I definitely would
have to find a way to blend it with
something more contemporary.”
My sister and I are highly
invested in art. Whether we paint
together or we watch a movie,
she and I are always engaging in
different mediums of creativity
and new avenues of exploring art.
She believes that if one has the
“need to create art,” then there
is a place for anyone in the art
community.
“We’ve all overcome a lot, and
while I’ve overcome something
different than most people, at the
end of the day, that shouldn’t be a
criterion on how you’re judging
my art,” she said. “I don’t need a
grading curve for my art. I don’t
think I’m the only person in the
disability community that feels
that way because we want to be
seen as artists, not artists with
disabilities. You should want to
judge their art for how it makes
you feel.”
I could hear the tightness in the
back of her throat over the phone,
that constriction one feels as they
begin to form tears. “I never want
to be judged in a way that’s like ‘Oh
my god, she’s so good and she’s in
a wheelchair.’ I never want to be
good because I’m disabled. I want
to be great, period.”
And she is. She’s great because
she’s a singer, a painter, a fearless
artist and my pain-in-the-butt
sister. She’s great because she cries,
she laughs and she sings nonsense
on the beach, even at 24 years old.
She’s not just great because she’s
a quadriplegic operatic singer,
and she’s not just great because
she’s
triumphantly
overcome
tribulation. She’s great because
she’s Lauren, period.
“Art is meant to be shared,
although it’s a personal thing.
It thrives more so on an outside
opinion because that’s where it can
grow and can be cultivated. Art
blends all the facets of one’s life.
Our emotions do not stop. Ever.
And by expressing that emotion,
you can work through anything.”
Rolling into the spotlight:
My sister’s opera journey
COMMUNITY PROFILE
ERIKA SHEVCHEK
Daily Arts Writer
MATT GALLATIN
Daily Arts Writer
LEAD
Courtesy of Nic Novicki
Novicki said now is the time
for inclusion. He cites the ABC
sitcom “Speechless,” which has
multiple people with disabilities
involved
in
production
and
writing, as well as “Game of
Thrones” and “Breaking Bad,”
both of which have characters
with
disabilities
portrayed
by people with those actual
disabilities, as examples of what
proper inclusion looks like.
“I have to say, it’s unbelievable
to see Peter Dinklage on ‘Game of
Thrones’ as this amazing, smart
leader of a family, really the
brains of the operation,” Novicki
said. “And for all those people
who watch the show, they’re not
thinking of the helpless dwarf.
They’re thinking of the leader.”
Despite
the
lack
of
representation now, Novicki is
certain that the tide is shifting,
and he’s confident that more
exposure will lead to more
opportunities for people with
disabilities.
The
2018
Disability
Film
Challenge will be held Apr. 13
through Apr. 15, and registration
is open until Apr. 11. There is a 50
percent student discount.
Courtesy of Lauren Shevchek