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

