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# 2025-03-14 - Deaf Utopia by Nyle DiMarco
This is the first contemporary book i have read by a Deaf author. He
dictated this book in ASL and it was translated to English. For the
record, i also read Hellen Keller's books.
I thoroughly enjoyed the author's warm candor throughout Deaf Utopia.
It was easy for me to recognize his beauty without and within. I
got the sense that the author held *himself* in high regard and
eagerly pursued his own personal growth and self-exploration.
> I believe that it happens anytime an individual embraces who they
> are. They become confident, self-assured, and /passionate/ about
> their identity and everything that sets them apart from other
> people. ... When differences are embraced, stories become magical.
I favor bringing more of this magical energy into the world.
What follows are spoilers and excerpts that i found interesting.
# Author's Note
First, there is the capital D in the word "Deaf." Why?
The word "deaf," spelled all lowercase, is a reference to our
medical condition--the fact that our ears don't function the way
they're supposed to. The word "Deaf" starting with a capital D,
signifies so much more than the functional status of the pair of
flesh-funnels on the sides of our heads.
As a proud Deaf person, I am a member of a community. Together, we
share a common experience, a culture made up of customs unique to our
community, and a language--American Sign Language, for the Deaf
community in the United States.
The capital D is a choice. It's how I see myself, and how I want to
be seen. It's my preferred way of naming my identity. Not all
people whose ears don't work as intended will choose the same label,
and that's fine.
Our writing process began with my hands. I first told Bobby my
stories in American Sign Language--or ASL--in video-recorded
interviews, which Bobby then translated into English on the written
page.
I started the writing process in ASL because it is my natural
language, the one I most feel comfortable expressing myself in.
As always happens during the process of linguistic translation, many
elements of the source language got lost in the output language. The
beauty, power, /magic/, of ASL is reduced on these written pages.
We also write ASL dialogue using an all-caps method called ASL gloss.
The first thing you will probably notice is that the grammatical
structure of sentences in ASL gloss is different from that of
English. This is not because ASL is broken English, but rather
because ASL has its own rules, separate from those of English.
In our ASL gloss, you'll also see hyphenated words. Often, a hyphen
is used in ASL gloss to link together multiple English words covered
by a single sign. One example is "DON'T-KNOW." While the phrase
"don't know" consists of two words in English, in ASL it is expressed
using a single sign. Another way a hyphen is used in our ASL gloss
is with a repeated term, such as "TRY-TRY." This signifies that the
sign is rapidly expressed twice in a row. There are different
reasons why a sign is repeated. One is to modify a verb and place
emphasis.
But the ASL gloss phrases you'll see in this book aren't intended to
teach you the language of ASL. If you want to learn ASL, take a
class taught by a Deaf teacher.
The ASL gloss method has a different purpose: to keep your attention
on the fact that the majority of the people in this book are Deaf and
communicate using a language that is very different from the spoken
ones a hearing person is exposed to in everyday life and in
mainstream media. You see, a fascinating thing sometimes happens
when all explicit references to Deaf people are taken out of a
story. Readers sometimes forget that the people are Deaf.
Stories are the glue that holds communities together.
# Chapter 1
[The author describes the birth of himself and his twin brother.
His parents are both Deaf.]
With a lifetime of practice, Mom and Dad had become decent
lip-readers. They had to be; back then, they didn't have legally
mandated access to ASL interpreters, so lip-reading was an
indispensable tool in any Deaf person's communication survival kit.
By some estimates the average lip-reader captures only around 30
percent of the speaker's words--and the odds are even worse with
additional distractions. [Such as facial hair.]
* * *
"Are they Deaf?"
The doctor took a deep breath and fumbled with his worlds, trying to
find the right thing to say to Mom and Dad.
The D word seemed to make him uncomfortable.
"Well..." he started, then stopped and nodded. "Yes...."
Mom cut him off with her voice, "Are they both Deaf?"
The doctor sputtered and finally gave them an answer: "Yes."
Then he wound himself up to recite the speech he had prepared for
these situations. The news of a failed hearing test often came as an
emotional shock to parents. His first objective was to soften the
blow. ...
Bottom line, the doctor wanted to give parents hope.
The doctor began: "Please don't worry--"
He stopped, because Mom had jabbed a pair of thumbs up in his face.
"Good!" she declared. The doctor then noticed Dad thrusting his
fists into the air. He laughed and hugged and kissed Mom as if they
had just pulled the winning ticket to the lottery. The /genetic/
lottery.
The doctor frowned as he surveyed my mom and dad and brother cheering
and signing to each other. His confusion at my family's reaction was
and is typical of the medical view on deafness. Doctors often think
of deafness as a problem that needs to be corrected instead of a
natural difference, one beautiful dot among many on the brilliant
spectrum of human diversity, one that was also the crux of a culture,
language, and community--a way of life.
My family saw the test result differently. Dad was elated, because
it meant that Nico and I would be able to experience firsthand the
culture and language that shaped him as a Deaf person.
# Chapter 2
I wasn't taught American Sign Language; I was submerged in it.
That's how people acquire their native language: they don't learn it
consciously; they naturally absorb it from the available language
input in their surroundings. The key is a vibrant and accessible
language-rich environment. That's the vinegar that turns cucumbers
into pickles. If you drop a baby into an accessible language-rich
jar and give it time, that baby's going to turn into a native
communicator in that language.
The ASL and English alphabets may be closely related, but ASL has its
own rules, grammar, and syntax, separate from English. For example,
in English you might say "I'm going to the store." In ASL you'd sign
STORE ME GO.
From birth, I feasted on an all-you-can-eat buffet of ASL.
* * *
Princess Diana's advocacy touched the Deaf community, too. In the
1980s, she became a patron of the British Deaf Association, a U.K.
organization that advocated for access and equality for Deaf Brits
and was led by Deaf Brits, and she learned British Sign Language, or
BSL. When my mom saw footage of Princess Diana signing BSL with Deaf
people on Deaf Mosaic, the Emmy Award-winning television magazine
show on Deaf news, her heart swelled. Princess Diana was an
exemplary role model, and her actions delivered important lessons on
compassion, empathy, and caring that Mom wanted to pass along to us
boys.
# Chapter 3
In the year 1880, a bunch of older white men with prim side-parted
coiffures and handlebar mustaches descended upon Milan, Italy. They
had come from all over Europe and the United States for the
International Congress on Education of the Deaf.
It is now known simply as the Milan Conference--one of the greatest
tragedies in the history of the Deaf community.
James Denison, from the United States, was the sole Deaf delegate in
attendance. The purpose of the conference was to decide the best,
most effective approaches to educate the Deaf, and only 1 of the 184
delegates in the room making those decisions was Deaf.
One was Alexander Graham Bell. Bell was a treacherous man who
espoused many ideas that deeply harmed my community. He did not even
do the thing he was best known for: inventing the telephone. The
idea and design for the telephone was first created by a poor Italian
American named Antonio Meucci, with whom Bell shared a lab. Meucci
could not afford the patent; Bell could.
Anytime I see Bell's name, I feel pain and anger. Bell would have
been opposed to the very idea of my existence as a multi-generational
ASL-fluent Deaf man. He devoted his life to the study of speech and
teaching Deaf children how to speak. He propagated the eugenicist
view that Deaf people should not marry each other (so they didn't
make more cute Deaf babies like me) and advocated for oral education
of the Deaf--or teaching the Deaf through auditory languages. He was
opposed to teaching Deaf children sign language...
... the delegates voted overwhelmingly in favor of oral education as
the preferred method of instruction for the Deaf. The delegates also
voted to declare sign language harmful to learning how to speak,
lip-read, and understand ideas, establishing so-called pure oral
education as the preferred method and effectively banning sign
language from the education of the Deaf.
For decades, the oral education method proliferated in Deaf schools
in western Europe and the United States. At those schools and
elsewhere, hearing administrators decided that Deaf people who
communicated in ASL were incapable and stripped them of their jobs.
Shockwaves from the Milan Conference were still rippling through Deaf
education more than a century later, when I enrolled in the Lexington
School for the Deaf in Queens.
* * *
At school, Miss Dawes signed, too. But she also used her voice to
speak English while signing at the same time, a form of communication
called simultaneous communication, or sim-com. For sim-com to be
effective, both voiced and signed modes of communication need to be
delivered equally--both in substance and clarity. That's how it
works, in theory. But in practice, the speaker will usually lean
toward one of the two, typically the speaker's dominant mode of
communication. For Miss Dawes, a hearing person, that was spoken
English. She leaned heavily on it, and often only signed every
second or third word she spoke.
Miss Dawes wasn't very good at signing, and her hands kept skipping
words. But even then, I could still understand her a lot better when
I focused on her signing instead of trying to listen to her spoken
English.
All the Deaf schools in New York City taught their students this way,
mandating hearing aids and using sim-com in classrooms.
The Lexington School for the Deaf has been around since the Civil War.
My brothers and I were the third generation of our family to go
there; my grandma was the first, starting way back in the 1940s. The
Milan Conference had taken place more than sixty years before, but
its long shadow still darkened the halls of Deaf schools; the pure
oral education approach the conference had endorsed was ironclad law
at Lexington.
It was a misguided hope. The goal should never be for Deaf people to
pass as hearing, but to achieve their full potential using methods
and languages that work for them. Speech didn't work for my grandma;
she never learned how to speak well.
The school, as is typical of the oral education school of thought,
confused speaking ability with intelligence and potential to learn.
Grandma's parents thought signing was beneath humans--that it was for
monkeys.
But when her parents were out of the house and she found herself
alone with her grandpa, he did something that floored her. He
approached her, put up his hand, and started fingerspelling.
Surprised, she asked her grandpa how he had learned. Continuing to
fingerspell he told her that his brother, my grandma's great-uncle,
was Deaf like her. As he ended the conversation, he put a finger to
his lips and mouthed to my grandma, "Don't tell your mom and Dad."
He knew her parents wouldn't be pleased if they knew he'd
communicated with her in sign language.
Oral education was /still/ the norm at Lexington when my brothers and
I were students there. Understand that this wasn't in the distant
past; this was the mid-1990s. Just two and a half decades have
passed between then and the day I'm writing this sentence.
Fortunately, Mom was armed with knowledge of the educational system
and strong advocacy skills. She knew that laws like the Individuals
with Disabilities Education Act armed parents like her with powerful
rights pertaining to the education of her disabled children received.
She requested that Lexington provide my brothers and me with sign
language support services. The school resisted Mom's request, but
she persevered, and won.
That was how my teacher, Miss Dawes, came to start signing with me
and Nico in class. But friction remained between Miss Dawes and Mom,
with language fluency at the heart of the issue. Having never been
required to sign in class before Mom's request, Miss Dawes simply
was not fluent enough to converse with Mom, or any of her Deaf
students, in ASL. She not only sim-commed, she used Signed Exact
English (SEE) instead of ASL. ... Oralists prefer SEE over ASL under
the unproven assumption that SEE's closer resemblance to the English
language will be more effective in helping Deaf children to learn how
to speak English.
In the early 1990s, the New York City Department of Education had
formally recognized American Sign Language as a foreign language that
could be taught at schools throughout the state. ASL lessons boomed
among hearing kids, who thought it was cool to learn a new language
using an entirely different modality that involved their hands,
faces, and bodies. Mom pointed this out to the principal.
"Hearing students learn ASL throughout the state and the city. Why
can't we do the same here?"
No can do, the principal said. Bureaucracy would make such a
significant change too difficult.
"The Department of Education is inviting hearing kids to learn ASL,"
Mom said. "But Deaf people, the very people that language was
created to empower, can't even use it in their school?"
The principal didn't respond.
The deep and painful irony of the idea that hearing kids learned ASL
freely while their Deaf counterparts scraped along in Deaf schools
that disdained the language angered my Mom. But she didn't give up.
# Chapter 4
Suddenly my friend would elbow my ribs and whisper to me. In ASL,
whispering is quite different from whispering when using your voice.
Instead of worrying about being heard, you worry about being seen.
My friend kept his hands out of sight under the table as he
whispered...
* * *
In the 1960s, a brand-new invention would change the game for my
grandparents and their Deaf generation. It was called the
tele-typewriter, or the TTY.
TTYs were big, clunky machines with keys that connected with other
TTYs through a phone line. On a small horizontal screen you typed
out and received messages. TTYs had their own lingo--abbreviations
to take turns and finish the call. GA meant "go ahead," which
indicated to the other person that you were finished and they could
begin; SK was "stop keying," which you used to let the other person
know that you were ending the call.
TTYs made it a heck of a lot easier for Deaf people to communicate
with each other. They allowed us the easy freedom to make plans and
also enabled us with the power, as gracefully as I can put it, to
flake out--as in, to shamelessly cancel plans at the last minute.
Basically, TTYs were the original text messaging system. Deaf people
were texting long before everyone else caught up.
For a long time, Deaf people were left out from accessing
up-to-the-minute breaking news that radio offered hearing people.
Then pagers came along, which gave way to smartphones, which
eventually added social media... With my smartphone, I have access
to so much.
# Chapter 6
When Nico and I were around seven or eight, Mom and Dad signed us up
for Little League baseball. We were the only Deaf kids on the team.
Mom, especially, wanted it to be this way. Nico and I spent the
majority of our time surrounded by Deaf people in our family and at
school. An all-hearing Little League baseball team was a chance for
us to step out of the Deaf world we lived in.
We didn't have an ASL interpreter. Instead, Dad assumed the role of
de facto assistant coach. He helped out during practices and sat
with the team on the dugout during games. Whenever the coach talked,
Nico and I would first try to lip-read what he said, snatching a word
here and there. After the coach finished, Dad would turn to us and
sign a summary of what he was able to catch from the coach's lips.
# Chapter 7
[The author describes his father's childhood.]
Language deprivation had not only slowed the growth of his mental
capacities, it stunted his social and emotional development, too.
Since he wasn't highly fluent in either ASL or English, he didn't
have the words to share the frustration and anger he felt. So he
kept these emotions bottled up inside him, and they brewed and brewed
through the years. Over time, his pent-up feelings became a
permanent raging storm of anger and hate and violence lodged deep
inside him.
When he graduated high school, he bolted from Athens to the place he
knew he would have access to sign language: Rochester, where his Deaf
cousins lived. He enrolled at the National Technical Institute for
the Deaf... He was thrilled to be surrounded by Deaf people and
empowered with the easy of communicating directly with peers in sign
language. But he also saw how far behind his classmates he was. He
worked to make up ground, but he would never quite get there. It was
a monumental challenge to undo the damage of an entire childhood of
language deprivation, ineffective education, and deep social and
emotional trauma.
Every once in a while, though, the anger and frustration Dad had
internalized throughout his childhood needed an outlet. He resorted
to drinking alcohol and doing drugs to ease the pain and feel better.
The alcohol and drug habit turned into an addiction that he would
battle for a long time.
One day Dad came home from work and told Mom that he had quit his job
at the post office. Mom was floored. Dad had always complained
about his job and had often talked about quitting, but Mom let him
talk. She knew he needed to let off some steam and thought that his
talk was just that--all talk. She couldn't fathom him actually
quitting his job. His income and benefits supported the family.
And now all of a sudden, Dad had just up and left his job, without
even talking with Mom beforehand.
Quitting his job was first. Next came the extended disappearances.
Dad started spending a ton of time with his friends. There were some
bad eggs in that crowd, and Mom didn't like it when he hung out so
much with them. But now that he was unemployed, he had all this free
time on his hands, and he decided to give it to his seedy friends.
The length of his disappearances gradually got longer. Soon, he
started going AWOL for a few days at a time, without warning.
Mom and Dad started fighting.
Along with the disappearances came sudden bursts of irrational,
violent behavior. Minor transgressions committed by me and my
brothers were met with savage physical punishments.
Then came the hit to the family piggy bank.
One day, Mom checked her and Dad's joint investment retirement
account--which held their entire life savings--and found it had a
balance of exactly zero dollars.
Finally, there were episodes of catatonia.
[The physical abuse worsened, and the parents divorced.]
As a Deaf person, I don't have time to be upset at my own people. We
can't stop and point at each other. We have to be vigilant; we have
to continue to look outward and battle the storm, created and imposed
on us by larger society, that continues to rage all around us.
# Chapter 8
The culture at Maryland School for the Deaf was unlike anything my
brothers and I had ever experienced. High expectations were the norm
in and out of class... Teachers moved classes through lessons
rapidly and doled out a constant stream of challenging assignments.
Our classmates were whip-smart and carried themselves with an ease,
almost arrogant, confidence.
Pushed by our intelligent and creative Deaf peers and the competitive
and challenging environment, my brothers and I grew and flourished in
different ways.
* * *
The fall of my senior year, the school had a new transfer, a
good-looking guy from the West Coast who oozed surfer dude vibes.
All the girls made googly eyes for him. I looked him over and
thought to myself: "Mm-hmmm, this guy is hot."
Having such thoughts about a guy wasn't new to me; I had always just
pushed them aside while growing up. But now, entering young
adulthood and unattached to a girlfriend, I became more acutely aware
of them. Once I allowed myself to consciously acknowledge these
thoughts, they took a vise-like grip on me. No matter how much I
resisted, I couldn't shake them off. ... After a while I got used to
these thoughts and started wondering what would happen if I acted on
them.
Once in my senior year, I came close to finding out. ...
Then we locked eyes and I felt something rise up in my throat,
something more than idle curiosity--a feeling of intensity, a
longing. I searched his eyes and thought I saw that my feelings were
reciprocated.
But then nothing happened.
# Chapter 9
In 1990, President George W. Bush signed the Americans with
Disabilities Act (ADA) into law.
It was a key milestone in a long, winding path... that had been laid
brick by brick, decade after decade, by disability community
advocates like Helen Keller, Judith Heumann, U.S. Senator Tom Harkin,
and thousands of others who courageously fought for the civil rights
of those with disabilities.
Deaf people played a critical role in making the ADA a reality too.
The Deaf President Now (DPN) protest at Gallaudet University helped
lay down a good number of bricks in the final stretch of the path
toward the ADA. The DPN protest happened in March 1988; fifteen
months later the ADA was signed into law.
What did the ADA do? Simple: It made discrimination based on
disability illegal in many key areas, among them employment,
transportation, public accommodations, communications, and access to
state and local government programs, services, and resources.
Once, mall builders could laugh off requests for wheelchair ramps and
employers could rip up a Deaf candidate's job application if they
asked for an interpreter for an interview, without fear of consequence.
The ADA gave people with disabilities the ability to bring down the
hammer of the law on discriminators. The ADA turned access for the
disabled from charity into a right endowed upon us as citizens of the
United States of America. In a way it helped society change its
perception of people with disabilities from subhumans to, well,
regular humans.
But the ADA hasn't been perfect. Even with the law in place, people
with disabilities still have to fight tooth and nail for
accessibility. Businesses have sought legal loopholes and rejected
requests for accommodations--and have gotten away with it if their
action goes unchallenged. This was especially true in the early
years of the law, and it's still true today.
The state of disability rights and equality in the United States
continues to be unsatisfactory. The disability community keeps
fighting for better access, treatment, and respect. Inch by inch, we
continue our struggle.
* * *
Grandpa was having a heart attack.
At the hospital, Grandpa was rushed off for testing. A thoracic
surgeon called on my mom and grandma to explain the results.
... this was 1995, and the ADA was five years old. She had every
right to ask that hospital to provide an ASL interpreter to
facilitate communication, and she did.
The doctor responded, point-blank, "No." He wouldn't even use a pen
and paper. Instead, he started speaking, expecting Mom and Grandma
to lip-read. Left with no choice in the middle of a medical
emergency, they labored to understand him.
[They did not comprehend the explanation very well at all.] ... the
next word Mom caught on his lips was "surgery." And then he waved,
cutting off his explanation, and walked away.
All Mom and Grandma knew was that Grandpa had a deflated lung and
that he was having surgery. They didn't know how serious the problem
was, whether my grandpa's life was in danger, or the details of the
surgical procedure the doctor was about to perform on him.
Frustrated, Mom went to the front desk and requested an interpreter
from several nurses. Each person she asked denied her, until someone
finally led her to the hospital's patient representative service.
There she was asked to file a claim, which they promised to look
into. It would be a slow process, Mom knew, and she had no time to
waste; an interpreter was needed immediately.
When it was time, Mom and Grandma returned to the hospital and went
straight to the recovery area, thinking that's where they'd find
Grandpa. But he wasn't there. Confused, they asked at the front
desk, but no one there knew where he was. They stopped a nurse that
passed by, but he didn't know, either. They checked different floors
at the hospital but didn't see Grandpa anywhere. Confusion turned
into fear. Where /was/ Grandpa?
At last, they saw the thoracic surgeon. Gesturing and enunciating,
he told them that Grandpa was in the ICU, which sounded like very bad
news. Mom and Grandma sprinted to the ICU wing.
When they arrived, they saw tubes sticking into Grandpa's body
everywhere--his forearm, chest, nostrils. The sight of Grandpa like
this made Mom think he was dying.
From his bed, Grandpa was so relieved to see family. He'd been alone
in the ICU all this time, without an interpreter. He hadn't been
able to understand anything the doctor and nurses told him; the
doctor in particular refused to use a pen and paper. He had no clue
what was going on; he was scared.
Grandpa, too, thought he was going to die.
At last they found out why Grandpa was in the ICU. After the
surgery, his heart rate was too low and his blood pressure too high;
he was in the ICU so they could keep a closer eye on him.
Mom and Grandma were fuming. The doctor had given them very little
information before the surgery. ... The lack of accessible
communication heaped unnecessary confusion and stress upon the
situation. Grandpa's serious health condition was stressful enough;
the additional problems caused by the doctor and hospital refusing to
allow access to communication were not only discriminatory and robbed
him and our family of dignity; they literally hurt Grandpa's chances
of survival.
The doctor entered Grandpa's ICU room and gave a brief explanation of
the surgery. [Which the Deaf women could not make out very well.]
Finally, after a week in the hospital, Grandpa was allowed to go home.
Never once in his week long stay had he been given access to an
interpreter. the patient representative service was still reviewing
the case, and the doctor and everyone else kept telling Mom no.
[At home the grandfather developed a fever.]
They went to the thoracic surgeon's office. Again, he refused to
provide an interpreter. Grandpa was taken in for testing.
Afterward, the doctor explained the results to Mom, Grandma, and
Grandpa. But without an interpreter, the communication was
superficial. The doctor said "infection" and showed them the X-ray.
... The doctor ordered them to take Grandpa back to the hospital
immediately.
Grandpa, Grandma, and Mom were upset. Again, lack of communication
access had contributed to the worsening of Grandpa's health
condition. The doctor hadn't given them clear instructions for
post-surgical care: things they should monitor, activities Grandpa
should avoid, food he shouldn't eat. If they had received the
instructions clear via an interpreter, they might have been able to
prevent this infection, or caught it before it had spread throughout
his lung. And if they'd had an interpreter the first time, Grandpa
wouldn't have hidden his illness for fear of returning to the
oppressive, confusing environment at the hospital.
Grandpa had another surgery, this time to suction out the infection
and clean u- the inside of his lung. His second visit to the
hospital lasted two weeks, and Mom, Grandma, and my two uncles took
turns staying with him at the hospital. They wanted to have someone
by his bedside at all times, to support him and help him communicate
with nurses and doctors.
Again and again, Mom followed up with the hospital patient
representative service. When she was at the hospital she visited
their office, and at home she made calls using the TTY. ... During
one call, she encountered a representative with a condescending
attitude who brushed off her interpreter request, telling her to pay
for her own interpreter or stick with lip-reading. When she tried to
explain the ADA law and how it required hospitals to pay for
accommodations for disabled people, the patient representative said
under her breath, "Bullshit." The relay operator caught it and told
Mom. By then the rep had hung up and Mom couldn't respond.
Mom never gave up. She kept calling and reaching out to the patient
representative service. At last, Mom finally heard back from the
service; they had relented and scheduled an interpreter. But the
interpreter didn't show up. They booked another one, who showed up
but signed so poorly that the family couldn't understand her.
Mom did her best to find other solutions to communicate. A teacher
at Lexington who had taught Neal had a sister who signed fluently and
worked at the hospital. She wasn't an interpreter, but she
graciously helped out a few times. She wasn't always available
though, and anyway these band-aid solutions didn't fix the real
problem: the doctor and the hospital's stubborn refusal to provide
Deaf people equal communication access, a right protected by the ADA.
To address the hospital's and doctor's illegal refusal to provide an
interpreter, my grandparents filed a lawsuit. Legal action is one
powerful tool that people with disabilities can use to combat
discrimination.
Unfortunately, the lawsuit failed. The hospital was able to prove
that they made attempts at providing us with interpreters (only two
times in three weeks, both taking place during Grandpa's second stay
at the hospital, was apparently enough effort). The ADA was young
back then, and the courts were still trying to figure out how it
would apply.
# Chapter 10
During winter break of my sophomore year at Gallaudet University, I
escaped the biting chill of the D.C. winter for the sunny beaches of
Costa Rica. It was my first international backpacking trip...
We dreaded the end of our dreamy vacation and having to start school
again so soon. Determined to squeeze as much fun out of the little
time we had left and finish out trip with a bang, we set out to the
duty-free shop and bagged a large bottle of dirt-cheap flavored
vodka.
We stumbled pas the sample tray lady into the duty-free store and
emerged with a six-pack of bottled beer.
The flight attendant did a double take as she walked by us. She
wheeled around, a stern look on her face, her mouth motoring away, a
finger pointed toward us, and her head shaking.
Obviously there was an issue, but we weren't sure exactly what it
was. The alcohol swimming in our heads wasn't helpful. It appeared
the problem had to do with the bottle of beer we had in our hands,
but why? We'd just bought them in the airport and brought them
onboard to drink, just like we'd done with bottles of water or sports
drinks all the time. Were the rules different with alcoholic drinks?
Or maybe they didn't think we were of legal drinking age?
As our foggy brains muddled through the possibilities, one of us had
the sense to point to their ear and shake their head--the universal
gesture for "I'm Deaf."
The flight attendant looked at us suspiciously. "I don't believe
you," we read on her lips.
We stared back at the lady, at loss for words, gestures, or signs.
What can you do or say to prove to someone that you're Deaf? We
don't have special ID cards signifying that we're Deaf, nor is it
clearly stated on our driver's licenses.
Our next step was to communicate in an accessible and adult manner.
At the start of our trip, we'd brought along a travel journal to use
for communication. All throughout the trip we filled up the pages of
the journal with conversations with hearing people we met along the
way--directions to the beach, flirtations with strangers we met at
bars, exchanges of travel tips with fellow backpackers...
Left with no choice, we gestured, as politely as we could, a request
to the flight attendant to bring out a pen and paper so we could
continue our conversation.
The flight attendant shook her head and spoke: "I know you can read
my lips."
Now this lady was straight up discriminating against us. First she
refused to acknowledge our disclosure of our being Deaf, and now she
was dictating to us how we were to communicate with her.
One funny thing about lip-reading: it leads you right into a
quagmire. Most folks are able to lip-read the basics--for example,
I've seen the words "Can you read my lips?" on a thousand different
lips, and I have problem reading those specific words. But if I
answer yes to that question, the person speaking will then advance
into a conversation that I can understand roughly only 10 to 20
percent of, if I'm lucky. Then I'm screwed. ... It was her next
words that we were so worried about being able to understand, and why
we were so adamant that she bring out a pen and paper.
By this time our annoyance with the flight attendant had escalated
into full-blown indignation. She kept talking; we frowned at her
lips and shrugged.
The flight attendant grew more animated, and probably raised her
volume. [Another passenger tried to get involved, then gave up.]
The flight attendant was still in the aisle, shouting and angry.
It couldn't get any worse than this, we figured. So we dug in.
[She left and then returned.]
But then I saw the two men behind her. They were dressed head to toe
in camouflage military uniforms and wore black bulletproof vests.
When my eyes saw what they were holding, I felt the hair on the back
of my neck stand on end.
Around the men's shoulders were thick black straps, which were
attached to AK-47s.
Sneering, the flight attendant put up her hand, commanding us to wait
in our seats. She stood there, flanked by her two armed henchmen,
her eyes never leaving us until every other passenger on the plane
had gotten off. And then, with a proud cock of an eyebrow, she
stepped aside. The first of the armed soldiers pointed at us and
gestured at us to come with him.
Confused and terrified, we obeyed. ...as we walked off the plane, we
saw that out trouble had just started.
As we entered the airport, we saw that it was eerily quiet. Two rows
of armed soldiers, about two dozen in all, every single one of them
holding an AK-47, stood waiting for us inside. Our escorts led us
between the rows of soldiers, who regarded us with mild indifference
on their stoic faces.
We approached the corridor and suddenly I realized why the airport
appeared to be so quiet. Through the windows, we saw hundreds and
hundreds of people standing /outside/ of the terminal. The entire
airport was empty save for me, my friends, and our military escort.
The people outside stood near the windows, their noses pressed
against the glass, trying to get a glimpse of what had caused the
evacuation of an entire airport.
The train of logic in my head was leading me down a terrifying path.
Airports are evacuated when a terrorist threat is detected. Is that
what was happening here?
My mind was spiraling out of control. What if they were accusing us
of committing a serious crime and were planning to lock us up? How
would we get help? My phone didn't work; international roaming
wasn't a thing then. If I was lucky, they might let me connect to
the Wi-Fi, but even then I'd only be able to communicate via email.
With likely a poor internet connection, I wouldn't be able to call my
mom on video and talk to her in ASL. I'd be forced to explain this
terrible predicament using my second language.
The military escort led us to a private part of the terminal and into
a white room with a single light bulb hanging from the ceiling over a
steel table. It looked like an interrogation room from the movies,
one where cops brought criminal suspects for an ass-kicking. Our
military escort gestured us to sit at the table.
Finally, the door opened and two officers came into the room. They
seated themselves across from us with serious looks of disapproval.
One of them started speaking.
Not this again, we thought. How many times did we have to repeat
that stupid gesture? We tried it one more time: /point-at-ear, shake
head./
The officer paused for a moment, then pointed at his lips, with a
quizzical look on his face.
We shook our heads furiously, hoping we could finally hammer our
point home. We gestured for a pen and paper. The officer considered
our request, and then spoke to a soldier behind him. The soldier
left the room and soon returned with what we'd been requesting for
the past couple hours: a stack of notepad paper and a pen.
At last, we had the tools with which we could communicate. We
explained: We'd been on the plane drinking bottles of beef before the
flight attendant descended on us. We were never really sure what she
was trying to tell us, because she kept talking, and though we kept
trying to inform her that we were Deaf and needed to communicate with
pen and paper, she never seemed to understand--or believe us.
The officers sighed. I don't know what story they had gotten from
the flight attendant, but it must've been pretty dramatic for them to
decide to evacuate the entire airport and send along a military escort.
The officer was ready to let us go, but unfortunately we'd been
detained for so long that we missed the one flight back to D.C. that
day.
# Chapter 11
[The author met a lesbian couple in his travels.] They told me,
proudly, that they had just got married. They were from Argentina,
and one of them was a lawyer. She wrote that she advocated for
same-sex marriage in their home country and had finally succeeded
only a year and a half earlier, in 2010. Argentina became the first
country in South America to legalize same-sex marriage, the second in
the Southern Hemisphere [of the entire planet Earth], and the tenth
worldwide.
The topic of gay marriage struck a nerve I didn't know existed,
shining a bright light on the fact that I knew absolutely nothing
about gay people. I didn't realize so few countries allowed gay
marriage; in fact, i was barely aware that my own country disallowed
it at the time. The two women before me were inspiring figures in a
worldwide movement for the human rights of a long-oppressed
community. It was jarring to look at this happy newlywed couple in
that moment and think that only eighteen months ago they were banned
from marrying each other in their homeland.
Deep down I was aware it wasn't an accident I knew little about the
LGBTQ community. Growing up, if I found a guy good looking, my brain
would register it, but I would brush these thoughts aside, thinking
it was impossible that I could be into men. I was taught the false
and harmful stereotype that all gay men were feminine. ... As soon as
the thought "Am I gay?" arose in my head, I suppressed it
immediately. I had gay friends, but I kept them at arm's length and
avoided conversations about their gay experiences. Anytime I saw an
article or news clip about gay people, I'd ignore it. If I didn't
learn more about the LGBTQ community, I thought, I'd stay straight.
If I opened up my mind, I'd slide down a path of no return. So I
fought to keep all LGBTQ-related thoughts safely hidden away behind
this wall of my mind.
But there were moments when thoughts and emotions--about my
attraction to men--breached the wall.
* * *
The discovery of a gay, masculine man seemed to awaken something that
had long slumbered inside me. Soon after I found out about the gay
basketball player, I started having dreams. Sexual fantasies ran
through my subconscious, scenes of me and other men going to bed. It
felt so good, so right.
* * *
[The author had a pen and paper conversation with the lesbian couple.]
When they asked me what my sexuality was, I saw a safe outlet. An
opportunity to be honest, be truly myself without fear of judgment.
"I'm not sure," I wrote back. "I know I'm not 100 percent straight.
But I don't know what that makes me."
I looked up at them. They nodded and smiled.
"That's cool," they wrote. "Take your time."
Their nonchalant response was like a cool breeze on a sun-scorched,
110-degree day. I felt confidence blooming in me. Emboldened, I
opened up a bit further. They didn't ask--they knew to let me share
at my own pace. Talking with them was comfortable; I'd learned a lot
about myself already and I wanted to seize the chance to learn more.
I wrote: "I've felt that I wasn't straight for a long time, but I
never explored that question. I'm masculine and I love playing
sports. I don't look, talk, or act like a gay person, based on the
stereotypes I saw growing up."
They nodded and told me that I wasn't the only one that ever felt
that way. There were many others who were like me, uncertain and
confused.
It didn't help that I came from a small community, the Deaf
community. There were gay men in our community, of course, but in my
experience they tended to present as feminine. Before the Gallaudet
point guard came along, I had never met a Deaf person like
myself--masculine--who was also gay. So I had always thought it was
impossible I could be gay, despite the attraction I had to men.
The women wrote back that they didn't know what it was like in the
Deaf community, but they promised me that there were many masculine
gay people out in the word. They didn't push me, but they said if I
wanted to step forward in that direction, I would meet LGBTQ people
of so many different personalities, backgrounds, and identities whom
I could relate to.
The thought stuck with me for a while. The idea that there were many
LGBTQ people out there, an entire community, reminded me of my Deaf
identity.
My conversations with the lesbian couple fractures the wall I'd built
in my head. For the first time in my life, I began to think, with an
open mind and heart, about the possibility that I was into men.
I made a conscious decision to explore that possibility and see where
it took me.
* * *
[At the Clin d'Oeil, a gathering where Deaf people used International
Sign, the author felt attracted to a French man, and they hung out.]
I felt the urge to kiss him, but I wasn't sure how to take the first
step. Should I ask him if I could? Or give him a hint? Maybe touch
him on the shoulder, arms, hands? Playfully, but with enough
physical contact I could maybe lead into a kiss? But we weren't even
holding hands yet.
We stopped at an intersection and waited for the light to change.
ALMOST ARRIVE BAKERY, NEXT BLOCK, Alphonse said.
The moment was now. I had a choice: kiss him, or do nothing and
always wonder what could have been. I grabbed him by the shoulders,
turned him around, and went in for the kiss. Our lips met, and I
felt him give in to the kiss. It lasted a few seconds before we
broke apart. Anxiously I looked at his face, his eyes, studying him
to see what he'd felt. I saw confusion, but no anger.
I THOUGHT YOU STRAIGHT? he said.
I had never once given him a hint I was into men, much less him. The
kiss came flat out of nowhere for Alphonse. But I saw a slight smile
on the corner of his lips.
I pulled him in and we kissed again, longer this time. ... the
experience was totally new and made me euphoric, my mind spinning and
my heart fluttering.
Eventually Alphonse and I resumed our walk to the bakery, as my heart
pounded. We grabbed our pastries and sat down at a table to talk
more. We didn't have much time. I looked at my wristwatch; I had to
catch my train in a few minutes. We stood up from our table.
HEY, VISIT-ME MY HOME OVER-THERE NICE, YOU CAN, he said.
We hugged and kissed one last time, and then I left.
I ran through the kiss in my head over and over again--my first
romantic kiss with a man. It felt nice. I enjoyed it, and I wanted
more. I wondered what would have happened if I hadn't had a train to
catch. ... I thought about what the kiss had meant. I'd known I was
attracted to men, but I'd only ever looked at them, never touched. I
didn't know whether I'd take pleasure in actual physical interaction
with one--until that day. I'd felt enough to know I wanted more.
* * *
I wanted to continue to explore my sexual curiosity, so I downloaded
Grindr and set up an account... I didn't use Grindr for very long.
For one, it's an app primarily used for hooking up rather than for
meeting and dating new people. And two, I didn't feel great about
using the app while actively hiding my sexuality. So I deactivated
my account and deleted the app from my phone.
# Chapter 13
I found a statistic from a U.S. census program that estimated there
were around ten million Deaf or hard of hearing people in our
country, a number roughly equal to the population of the entire state
of Michigan.
How many Deaf and hard of hearing people existed on earth? The World
Health Organization gave my my answer: nearly 360 million people. ...
Put one way, there were more Deaf people on Earth than there were
Americans [or rather, USians].
I thought about the biggest challenges that Deaf people face. An
obvious example, one that my mom taught me and my brothers to prepare
for, was discrimination.
I came across another important statistic, one that very few people
are aware of: about 90 percent of Deaf children are born to hearing
parents, and sometimes that Deaf child is the first Deaf person these
hearing parents will ever have met. Many Deaf children grow up in
households where they struggle to gain access to language; their
parents may not sign, and the speech and listening methods they try
with their child may not work. Due to lack of access to language,
these Deaf children become language deprived--which happened to my
father. By the time these kids hit middle or high school, their
language acquisition is severely delayed: they're unable to express
and comprehend either English or ASL as well as they should at their
age. This impacts them in many other ways: they struggle to
understand key concepts of math, science, and history; they are
unable to develop important basic social skills; and often their
emotional development is stunted.
# Chapter 14
In the 1970s, a Deaf scholar named Dr. Tom Humphries invented a new
word: "audism." It meant "the notion that one is superior based o
one's ability to hear or behave in the manner of one who hears."
Audism isn't just discrimination against those who are Deaf and hard
of hearing. It's a belief that pervades our systems and people. It's
the feeling, deep in the bones and seared into the consciousness of
hearing people, that people who are Deaf are beneath those who can
hear. That we're not worthy of people's time and attention. Of
gaining access to language, education, information, entertainment,
the world. Of the right to exist.
One of the most common assumptions people make about Deaf people is
that we aren't as smart and capable as hearing people.
In a warped way, my being Deaf has occasionally tilted playing fields
in my favor.
# Chapter 15
In our interviews, Anita would say things like: "What do you think of
Lacey? Is she modeling well? There seems to be an attraction
between you and her."
In actuality, sparks never flew between us; we never had a thing.
But by the latter half of filming the show, I had a good
understanding that manufactured storylines were part of how reality
TV shows like ANTM worked, and I played along with the Lacey
storyline, to an extent.
But when the questions turned to my romantic life in general, I
became more guarded in my responses. For one, all of their romantic
questions focused on the female gender. They asked what type of
woman I was attracted to, what I was looking for in my ideal woman.
I grew weary of ANTM portraying me as a straight person who was
attracted to women only. By then, I had made important progress in
understanding my sexual identity and knew with certainty that I was
not straight. Allowing ANTM to portray me that way would be a
harmful, damaging step backward for me, and it scared me to think
about that happening. I'd earned each step I'd taken thus far; I
didn't want to give up a single inch.
When I responded to these questions, I chose my words carefully.
Intentionally, I used neutral "they" and "them" pronouns. ASL is
ahead of the curve when it comes to pronoun usage--our pronouns are
genderless. ... When I signed these gender-neutral pronouns, I also
mouthed "they" and "them."
Ramon caught on to this and pulled me aside.
"Which pronouns do you prefer me to use when I interpret: they/them
or she/her?" he asked.
I told him. On the same page as me, he interpreted my responses into
spoken English using the gender-neutral pronouns whenever I was asked
about my romantic interests during interviews.
Eventually, one of my gender-neutral responses landed on Anita's
final nerve. She had a storyline to build, and I was doing her no
favors in her efforts. She stopped her line of questioning abruptly
and asked me, point blank, to repeat my answer, with female pronouns.
The moment felt like a test.
"I don't want to do that. I would prefer to use 'they' and 'them'
pronouns."
Anita looked into my eyes for a moment, searching for something more.
Then her eyes dropped, and with pursed lips, she accepted my refusal
and moved on.
From that point on, we spent less and less interview time on my
romantic life.
# Chapter 16
[A jealous and widely followed Deaf vlogger posted faked photos of
the author on a gay dating app.]
I really didn't like the idea of coming out. Straight people never
declare their sexuality. So why do LGBTQ people have to? The
practice implies that the default sexual orientation is heterosexual,
and anybody that isn't has to announce their sexual identity to the
world. That is bullshit.
Unfortunately, the Deaf vlogger who'd outed me put me in a situation
where I felt trapped, pressed by all my friends asking about my
sexual identity, making me feel like I needed to say something
quickly. But if I was going to come out, I was determined to do it
on my own terms.
Another reason I didn't want to make a big announcement was that I
wasn't sure how to define my current sexual identity. That was my
second question: "What do I come out as?" I knew from my brief
encounters with men in the past that I liked men romantically. But I
also thought I was still into women. I'd met a Deaf woman recently,
and we were texting every day. In that direction, the sparks still
flew. ... The only thing I knew was what I /was not/, and that was
straight.
... my sexual orientation could change at any time, depending on the
situation and the people involved. My sexual orientation was fluid.
... My sexual attraction was flexible, evolving as I went on.
I replied to that tweet with a link to the article that explained
sexually fluidity. That was it. Literally no other words were in
the tweet. With that brief reply tweet, I officially outed myself to
the entire world.
I closed [the app] and put my phone away for a moment t pause and
breath. Different emotions coursed through me. One of them was
relief, the kind that made me literally breathe in deep and then out.
Ahhhhh. There was no turning back, and that felt powerfully
relieving.
# Chapter 17
Today Nico is a professional DJ. He literally gets paid to play
music at events. He has plenty of natural rhythm and dancing
ability, which he uses to lead group dances at the events he deejays.
Despite everything--his being Deaf, society's perception of Deaf
people's ability to appreciate and understand music, the doubt fueled
by internalized ableism he has to endure from me, his own brother--he
achieved his dream. His example proved to me that the unlikeliest
feats were indeed within reach if you put your mind to it and ignored
all naysayers. In a way, Nico and his relentless pursuit of his
passion for music gave me the audacity to believe I could learn to
perform complicated dance routines set to music on national
television.
# Chapter 19
When I came out as sexually fluid, media outlets picked up my story
and amplified the heck out of it. ... I was astonished and flattered
and, quite frankly, terrified that such a public spotlight was being
shined on my coming out.
... after those walls came down and I allowed myself to freely have
feelings toward guys, I realized that the emotional and physical
connection I could have with men was just as strong as what I'd
shared with women. The more I dated men, the stronger these feelings
became. Inversely, my feelings for women grew weaker and weaker.
As I continued to date more and more men, from time to time, I would
meet a whip-smart, wisecracking, confident Deaf woman who tugged at
my heart.
Still, even with the exception of an occasional Deaf woman that
attracted me, I could feel the compass needle of my romantic
attraction orient itself primarily toward men.
But there came a point when I started to ask myself: Who do I want to
wake up to in the morning? With whom can I experience soul-mate
levels of connection? As far as my sexual identity, with whom do I
feel most truly myself? The further I delved into my sexuality, the
more my answer to all those questions leaned toward "men."
And so my perception of my sexual identity shifted--from sexually
fluid to queer.
# Chapter 20
I love question and answers during meetings when I'm pitching a
Deaf-centered story. The questions, often about the Deaf experience,
were easy to answer. I drew from my life and stories shared by my
Deaf peers and spoke from my heart. And every time, the listeners
are hooked.
I have no doubt that my steadfast pride in my Deaf identity is the
reason. I love being Deaf so much; I love everything about the
uniqueness of my and other Deaf people's existences. I'm fascinated
by it, and I want to share everything about it with other people.
I've found that this enthusiasm can be contagious. When I talk about
the deaf experience with passion, others are infected by my
enthusiasm. They want to know more.
This phenomenon isn't unique to me or to the Deaf community. I
believe that it happens anytime an individual embraces who they are.
They become confident, self-assured, and /passionate/ about their
identity and everything that sets them apart from other people. Just
then, the different qualities the person and community have--a
missing sense, a distinct language, a proud culture, a steadfast
resilience in the face of oppression stretching back for
millennia--become glowing marvels. From them, you can spin stories:
Stories that teach and inspire.
When differences are embraced, stories become magical.
author: DiMarco, Nyle, 1989-
(TXT) detail: gopher://gopherpedia.com/0/Nyle_DiMarco
LOC: HV2534.D56 D43
tags: biography,book,deaf,non-fiction,queer
title: Deaf Utopia
# Tags
(DIR) biography
(DIR) book
(DIR) deaf
(DIR) non-fiction
(DIR) queer