Disability and Identity in the Media

DISABILITY AND
IDENTITY IN THE MEDIA

ELLI PERKINS

Growing up with a brother who has disabilities was much
like a guessing game – I never knew whether or not I was doing
the right thing. Was I being too rough with him? Was I going
too easy on him, not pushing him to his potential? I wanted my
younger brother to be able to do everything with me, from
playing to eating to snuggling. However, he was simply
incapable of doing so for beginning portion of his life. It was
frustrating. I fostered resentment towards Will for a very long
time, as everything about him demanded so much. His
conditioned demanded the attention of my parents, his medical

supplies demanded the free space in our house, his existence
demanded that my childhood was both chaotic and terrifying at
the same time.

My earliest memory of my
brother was a time when he was
healthy enough to leave his hospital
crib. A nurse pulled the both of us
around the sterile hospital corridors
in a wagon. I remember asking if I
could go into a room that looked
exciting, like a playground, to me.
My mother answered that we
couldn’t go into the physical therapy
room, because Will didn’t need that
kind of treatment.

This frustrated me. He needed
so much, yet he didn’t need to go to
the one place that looked like fun to
me. I felt as if I sacrificed so much
for him, but his disease couldn’t
benefit me in this one small way.

Looking back, I recognize that my thoughts as a four year -
old fell somewhere on a spectrum that ranged from what I would
call “Typical Childhood Thoughts” to “Selfish, Immature Thoughts.”
I cringe at the idea of the latter. The peculiar thing about this
memory is that my mother took a picture of us that day in the wagon.
I’m not sure if I would remember this instance without the
photograph, serving as a reminder of what happened.

I grew up in a world of
photography – vernacular
photography, that is. My
grandfather was a famous glass
artist and professor, while my
grandmother was a potter and
professor. I, myself, did not
entertain the idea of photography
being an art until middle school.
The majority of my childhood
and adolescence was populated
by snapshot, day to day
photographs – the kind that would
not merit their own sleeve in an
album, so they would get tucked
behind another photograph.

My mother was very good
about keeping family photograph
albums when I was younger.
When my brother was born, she
spent so much time at the hospital that she was unable to
continue the albums, but there are still an abundance of pictures
of Will. Sometimes, looking at photographs from Will in the
hospital, I am struck with the feeling that they were taken by a
distant scientist or doctor, not a warm, close relative of mine.
The images seem anatomical, medical. They document Will’s
condition, not Will as an individual. Portrait photography
largely captures only the face, so that the emphasis of the
portrait is on the demeanor of the subject. Portraits that

emphasize specific oddities or
features of a person are seen as
mocking, like Diane Arbus’s
work. The photographs of Will in
the hospital resemble these more
so than they resemble portraits, or
even snapshots. His disabilities
are the subject of the shots, not
him.

As I flip through Will’s
albums, his disabilities become
less and less prevalent. This is
likely because his condition has
improved immensely. He has the
same pudgy, steroid filled cheeks
in every picture from when he was
young. There are common, in the
sense of a snapshot, vernacular
images of his birthdays. The lit
candle atop the cake, messy hands
and face, family gathered around
the child. The standard birthday
snapshot conventions are present in
Will’s birthday pictures. The only
thing that differentiates them from
my birthday pictures is that his
were taken in a sterile, sickly
building. This is how Will
presents himself in our
photographs.

Will is not represented in the media. The only cinematic
representation of people with disabilities that comes to mind is
in Forrest Gump, which nauseates me. It represents individuals
with intellectual disabilities as one of three things – pitiable,
inspiring, or normal, like the rest of us. The pitiable notion is
downright offensive, as a disability does not define a person.
Individuals with disabilities are not to be considered “inspiring”
more than any other person. Considering them so just because
they have overcome an obstacle that someone else may not have
to face is, once again, defining a person and his or her abilities
by his or her disability. The concept that people with disabilities
are normal, just like the rest of us, is also disgusting, because
they are not normal. On
the contrary, they are not
special. There is not a
spectrum for how much of
a person you are, whether
you have a disability or do
not. People are just
people, searching for their
own identities and places
in this world. That is why
representation of
disabilities is difficult –
because it can’t be too
forced without seeming
offensive, but it also can’t
be so subtle that it does
not communicate the
representation.

Regardless, people with disabilities have always been
viewed as otherworldly by the masses. I remember it was
always a treat to be able to take Will out into public once he got
home from the hospital. I
was proud of him, and I
wanted to show him off.
My pride surpassed that of
the common pride of an
older sibling.

I had a special brother.
My brother almost died.
But he did not, and I made
damn sure that everybody
knew it.

I remember navigating
Will’s stroller up and down
the aisles of grocery stores,
while an unwieldly tank
delivered oxygen to his
nose through the nasal
cannula. Other shoppers
would stop to gawk at Will.
Like he was a car in flames
on the side of I – 95, they
wanted to stay as far away as possible, while still being able to
get a good look at him. I could read their minds.

What’s wrong with him? Autism, amongst other things? Down
Syndrome?

I wish I could tell them that there was no use in trying to
label his disability. I wanted to do so myself for years. It
would’ve been easier. But Will’s complications stem from
prematurity, so the only suitable title for him is “preemie,”
which brings its own set of assumptions.
Regardless, what good does it do to call him
a preemie? No two premature babies are the
same, just as no two children with Autism or
Down Syndrome are the same. People with
disabilities live just as intricate of lives as
people without disabilities. The issue with
the representation of people with disabilities
is that people assume the disability dictates
their lives. It doesn’t. It is simply one part
of their lives, one part of their identities.

In Illness as Metaphor, Susan Sontag
butts up against the way society perceives
illnesses. In the case of cancer, Sontag refers
to language like the “fight” against cancer
and cancer “victims” as destructive, as they
perpetuate dangerous preconceptions as to
how cancer affects a person. The media force feeds the public
the notion that individuals with breast cancer are supposed to be
pink – clad warrior women, supported by their family and
friends who run in the Susan G. Komen Race for the Cure. This
stereotype is incredibly destructive; are men with breast cancer
supposed to take on this identity? What about the rare child that
has breast cancer? Is he or she expected to be a warrior as well?

My frustration society’s understanding of disabilities is
similar. Paralympics athletes have always overcome incredible
adversity, just as children with down syndrome are all smiley,
young, and cute. There is a mold that people with disabilities
fill in the media, and that is how they are represented.

I understand that there is no
way to perfectly capture a person, or
a type of person, in a photograph.
But when I look at pictures of Will
in my family’s photo albums, I see
Will. I don’t see the mess of tubing,
or tape marks from holding tubing to
his skin. There is a duality. I see
my brother. I acknowledge that he
is a person who has survived a 15%
chance of survival. These
sentiments occur separately to me,
and I wish they would to everyone
else.

Will has always presented
himself as sick. He has always had
medical issues, but those issues have somehow seemed to
pervade his personality, even his identity. He has always felt
like he was sick in some way or another. I can’t help but
wonder how this may be different if disabilities were viewed
differently in society. Will plays on special sports teams, loves
video games, and hates our dog. There is more to him than his
disabilities.