Defiantly Deaf
Copyright & 1994 by The New York Times Company. Reprinted permission by New
York Times and Andrew Solomon.
Defiantly Deafby Andrew Solomon
Deaf Activists Live, Proudly, in a Different Culture, but Not a
Lesser One. A Cure May Be Near--and Some Might Not Even Want It.
The protests at the Lexington Center, which includes New
York's oldest Deaf school, are an important stage in the Deaf
struggle for civil rights, and on April 25, the first day of
student demonstrations, I ask an African-American from the 11th
grade whether she has also demonstrated for race rights. "I'm too
busy being Deaf right now," she signs. "My two older brothers
aren't Deaf, so they're taking care of being black. Maybe if I
have time I'll get to that later."
A Deaf woman standing nearby throws in a question for my
benefit: "If you could change being Deaf or being black, which
would you do?" The student looks confused, and is suddenly shy.
Her signing gets smaller, as though she doesn't want everyone to
see it. "Both are hard," she signs back.
Another student intercedes. "I am black and Deaf and proud
and I don't want to be white or hearing or different in any way
from who I am." Her signs are pretty big and clear. The first
student repeats the sign "proud"--her thumb, pointing in, rises
up her chest--and then suddenly they are overcome with giggles
and go back to join the picket line.
This principle is still new to me, but it has been brewing
in the Deaf community for some time: while some deaf people feel
cut off from the hearing world, or disabled, for others, being
Deaf is a culture and a source of pride. ("Deaf" denotes culture,
as distinct from "deaf," which is used to describe a pathology.)
A steadily increasing number of deaf people have said that they
would not choose to be hearing. To them, the word "cure"--indeed
the whole notion of deafness as pathology--is anathema.
My guide here is Jackie Roth, one of the protest's
organizers--a Lexington alumna, an actress and an advocate with a
practice in cross-cultural sensitivity training for hearing
people. Charismatic, self-assured and sharp, she has excellent
oral skills and lip-reads well. She speaks and signs
simultaneously, which has made her a natural for communicating
with the hearing world, and, therefore, an object of suspicion
among the Deaf (a position made more difficult by the fact that
she has, like many influential Deaf leaders, a hearing spouse).
She is unyieldingly ambitious.
"I'm Deaf of Deaf," she says. "I've always said that I'd get
to the top and open as many doors as I could for the whole Deaf
community. Every deaf child should know he can do anything except
hear." Since 90 percent of deaf children are born to hearing
parents, Deaf of Deaf carries a certain exclusivity and prestige:
Deaf of Deaf have usually grown up understanding from an early
age the issues that other deaf people may not take on until much
later in life. "My father was a dreamer. If he hadn't been deaf,
he would have done big things. His family was so ashamed of his
being deaf. My mom was a pragmatist, but my father used to say I
could do anything. If I said I wanted to be a singer, he never
said, `Deaf girls can't.' He just told me to sing."
With time, I will learn how unusual such attitudes are.
"When I mentioned a deaf dentist to my deaf mother," the
superintendent of Lexington, which is located in Jackson Heights,
Queens, tells me, "she said, `How good a dentist can he be if
he's deaf?'" A powerful sense of self is, for most empowered
Deaf, a product of the last 10 years. "My dad worked his whole
life in a factory, printing," Jackie says. "It's one of those
traditional deaf trades. The machines are so loud you can't talk
if you're already deaf you won't sue when you lose
hearing from the noise. Dad had to settle for that. It was the
40's, about as low a time as there was for being deaf in America.
He told me never to settle." In Deaf culture, everyone begins
with family and school history, then leads back to the topic at
it's part of the structure of intimacy I will encounter
here. "Lexington isn't going to settle either," says Jackie.
An hour after I meet the two proud students, I attend a
meeting between the nine-member core committee that organized
this protest and the chief executive of the school. Jackie opens,
"We do not accept the process by which a new C.E.O. has been
named this week to the Lexington Center for the Deaf," she says.
"We would like him to resign, and for a new search process to
take place." Every detail of the baroquely complex search process
is called into question. They want to oust the new chief
executive, R. Max Gould, who would oversee the component
institutions of the Lexington Center. Most would like to replace
him with a Deaf candidate, but whether the new chief executive is
Deaf or not, they want him to be approved by the Deaf community.
The center's director of public affairs says that the
protests will peter out soon, that students just want an excuse
to miss classes, but that is not my impression. "There are no
Deaf role models at Lexington," Jackie tells members of the press
four days later as the marches continue. Her signs, like her
voice, are impatient, quick, funny and fluid. "Few Deaf teachers
and even fewer Deaf administrators." The protesters--mostly
Lexington students--watch closely. Some are wearing big placards:
"The Board Can Hear but They Are Deaf to Us" and "Board Who Can
Hear Don't Listen. Those Who Can't Hear Do Listen." Some are
wearing "Deaf Pride" T-shirts or buttons. Individuals climb a low
wall so everyone can see their rallying cheers, and the crowd
chants back to them, many hands moving in repeating patterns.
The faculty representatives to the core committee--Maureen
Woods, Jeff Bravin and Janie Moran--are especially vigilant. "Do
you think the protest will work?" I ask. Maureen's signing is
methodical and impressive. "There is no choice," she says. "It
must work." Jeff interrupts. "The pressure has been building,
maybe since the school was founded in 1864. Now it's exploding,
and nothing can stop it."
A few days later, at another protest, Jeff and his
grandmother chat congenially. "My father and my grandfather went
to Lexington," Jeff says. "I am Deaf of Deaf of Deaf. We're ready
to take what should be ours." Jeff is 25, a member of the
"rubella bulge." In the early 60's, a rubella epidemic resulted
in a very high incidence of deaf children, and they have made up
most of the leadership of the Deaf Pride movement.
Concurrent with these protests, Jackie is giving a
performance in the New York Deaf Theater's adaption of "The
Swan." The play describes how a deaf woman of great passion
(Jackie) leaves her hearing lover and finds true love with the
Swan, who enables her imagination. The lover uses signed English
the Swan begins with no language but learns perfect
American Sign Language (A.S.L.), the language of the American
Deaf, which has its own syntax. Signed English, the use of word
signs in English-language word order, is not actually a language
cumbersome and slower-placed, it is often used when
hearing and deaf people interact. For Jackie's character, love is
a liberation from the limitations of hearing culture. As her
language, which had suffered the cramp and limitation of her
lover's English-oriented signing, opens up into the bodily
richness of the Swan's pure A.S.L., she discovers her Deaf self
and becomes free.
"I didn't learn real A.S.L. until college," says Jackie,
"and what a spreading of the wings it was when it happened!
Lexington's tradition of arrogant oralism--they've got a lot to
make up for." That Jackie should take so strong a stand against
oralism--a philosophy that the deaf should learn to speak like
hearing people--is striking, since she is an oral "success
story," a woman who can carry on a spoken conversation with
little apparent difficulty, who could, if she wanted to, pretty
much pass for hearing and who is sometimes dismissed by Deaf
purists as "not really Deaf." When Lexington was founded as the
first great bastion of oralism in America, it was the idealist
wish of hearing people to teach the deaf to speak and read lips
so they could function in the "real world" from which they had
been excluded. How that dream went horribly wrong is the grand
tragedy against which modern Deaf culture has constructed itself.
WORDS, WORDS, WORDS
The story of the Deaf is the history of Deaf education, and
is recounted in Harlan Lane's "When the Mind Hears," then
analyzed in his "Mask of Benevolence." These are the seminal
texts of the Deaf movement. In 16th-century Spain, for example,
only those who had given confession were allowed to inherit
property or title, so inbred noble families undertook the oral
education of their deaf children. But it was more than 200 years
before the Abbe de l'Epee pursued a vocation among the poor deaf
of Paris, learned their manual language and used it to teach
written French, so freeing the deaf from their prison of
illiteracy and isolation.
In 1815, the Rev. Thomas Gallaudet of Connecticut traveled
to the institute founded by de l'Epee in Paris, and persuaded
Laurent Clerc, a teacher, to accompany him to America to
establish a school in Hartford in 1817. A golden age for the
American deaf followed. Clerc's French sign language mixed with
indigenous American signs and a dialect used on Martha's Vineyard
(where there was much hereditary deafness) to form American Sign
Language. Deaf people wrote books, entered public life, achieved.
Gallaudet College was founded to provide the highest advanced
education to the deaf and is still the world's only Deaf
university.
In "Seeing Voices," Oliver Sacks suggests that once the deaf
were seen to function so broadly, it was natural that they should
be asked to speak. Alexander Graham Bell led the oralist
movement, which culminated with the dread Congress of Milan in
1880 and an edict to ban the use of sign. The insistence on
teaching English only (which prevailed until the 1980's; "I got
my hands rapped if I signed," Jackie recalls) served not to raise
deaf literacy, but to lower it.
Forbidding sign turned children not toward spoken English,
but away from language. "We felt retarded," Jackie says.
"Everything depended on one completely boring skill, and we were
all bad at it. Some bright kids who didn't have that talent just
became dropouts." Even those who developed pronunciation lost
out. "History lessons," Jackie says. "We spent two weeks learning
to say `guillotine' and that was what we learned about the French
Revolution. Then you go out and say `guillotine' to someone with
your deaf voice, and they haven't the slightest idea what you're
taking about--usually they can't tell what you're trying to
pronounce when you say `Coke' at McDonald's."
Learning was supposed to happen through lip reading, a
remark most lip movements are associated
with more than one sound, and the lip reader must guess and
intuit in order to make sense of what is being said. "Pat, mat,
bat," Jackie mouthed. "Now, did I say the same word three times
or did I say three different words?" For someone who already
speaks English--someone deafened postlingually--the technique can
be developed, but for someone with limited English, it is an
excruciating endeavor. "Socially or in secret," Jackie says, "we
always signed. No theory could kill our language."
Though at least 30 percent of deafness is genetic, more than
90 percent of deaf children are born to hearing parents. So most
deaf children enter families that neither understand nor know
their situation. They must identify they are
first exposed to Deaf ways in school. When you meet a deaf
person, his school is a primary mode of self- it's
usually told after his name but before his job. "Lexington" and
"Gallaudet" were among the first signs I learned.
The Deaf debates are all language debates. "When I
communicate in A.S.L., my native language," M.J. Bienvenu, a
political activist, said to me, "I am living my culture. I don't
define myself in terms of `not hearing' or of `not' anything
else." A founder of the Bicultural Center (a sort of Deaf think
tank), M.J. is gracious, but also famously terrifying: brilliant,
striking-looking and self-possessed, with signing so swift, crisp
and perfectly controlled that she seems to be rearranging the air
in front of her into a more acceptable shape. Deaf of Deaf, with
Deaf sisters, she manifests, like many other activists, a
pleasure in American Sign Language that only poets feel for
English. "When our language was acknowledged," she says, "we
gained our freedom." In her hands "freedom"--clenched hands are
crossed before the body, then swing apart and face out--is like
an explosion.
The fact that A.S.L. is a full (though not written)
language, with a logical internal grammar and the capacity to
express anything that can be expressed verbally, eluded scholars
until William Stokoe published his ground-breaking "Sign Language
Structure" in 1960. This became the basis for the Deaf activism
of which Lexington's is the most recent example. "To establish
the validity of A.S.L.," Stokoe says, "we had to spend a long
time dwelling on how it resembles spoken language. Now that the
validity of A.S.L. has been accepted, we can concentrate on
what's interesting--how the life perceptions and experiences of a
native A.S.L.-user will differ from the perceptions and
experiences of hearing people." Or, as M.J. put it, "There are
many things that I can experience for which you have no
equivalent."
Perception of A.S.L. uses the language center of the brain
more than the visual-emotion center. Deaf children show no
predispositio they respond intuitively to
sign, and acquire it exactly as hearing children acquire spoken
languages. During the critical period for language acquisition--
at its height between 18 and 36 months, dwindling around 12 years
--the mind can internalize the principles of grammar and
signification. This paves the way for human thought. (There is no
rich abstraction without words.)
Once you have learned one language, you can go on, at any
age, to learn more or other languages. Spoken-written language
can readily be taught to the deaf as a second language. But to
bring up deaf children without sign models is terribly dangerous.
Though some remarkable ones acquire English through lip reading
and residual hearing with constant attention, more often deaf
children without exposure to sign bypass the key age for language
acquisition without really acquiring any language at all. Once
that happens, they frequently fail to develop full cognitive
they may suffer permanently from what has been described
as a preventable form of mental retardation.
Helen Keller famously observed that being blind cuts people
off from things, while being deaf cuts people off from other
people. Poor communication skills the
National Institutes of Health had a workshop this June on the
link between poor hearing (nonsigners) and violence. Deaf of Deaf
learn sign as a first language at home and are often surprised to
discover that other systems of communication are used elsewhere.
For the deaf children of hearing parents, school is often the
place where they first encounter sign. It is not just social or
intellectual stimulation tha when it is the
beginning of language, school is the first awakening of the mind.
As I slide deeper into Deaf culture by way of the Lexington
protests, I see how a language has defined a system of thought--
and I begin to imagine what M.J. may be able to experience that I
THE BEST TIME TO BE DEAF
On Monday, May 2, the demonstrators go to the Queens Borough
President's office. It is a beautiful, sunny day, and the
demonstration, though still in deadly earnest, has that air of
festivity that clings to anything for which people are skipping
work or school. Jackie Roth is holding forth, and so are a
variety of distinguished Deaf leaders. And Greg Hlibok, a leader
of the Deaf President Now movement, is expected.
In March 1988, Gallaudet University, the center of American
Deaf culture, announced the appointment of a new president.
Students had rallied for the school to have its first Deaf
president, but the chairman, remarking that "the deaf are not yet
ready to function in the hearing world," announced that a hearing
candidate had been selected.
In the following week, the Deaf community as a political
force came abruptly into its own. The movement that had begun
with Stokoe's validation of A.S.L. took its next great leap
forward. The Deaf President Now movement made it clear that the
Deaf community was able to function at any level it chose. In a
week, they closed down the university, won substantial coverage
in the media and staged a march on the Capitol with 2,500
supporters. The chairman resigned, and her place was taken by
Jeff Bravin's father, Phil Bravin (who is also on the Lexington
board). The board immediately named the first Deaf president of
Gallaudet, I. King Jordan. Late-deafened in a motorcycle accident
at 21, King Jordan is the most unaffectedly bicultural person I
against all the predictions of the hearing world, he
has proved a remarkable leader while vastly increasing the
school's endowment.
Deaf President Now is Lexington's inspiration. At the
Borough President's office, Hlibok is electrifying. An articulate
signer can build up a picture in front of himself, and the iconic
content of A.S.L. provides much of its immediacy and power. Like
M.J., Hlibok takes over a substantial block of space in front of
himself when he signs. He says that the Lexington board members
are like adults playing with a doll house, moving deaf students
like dolls. He seems to create
by the time
he has finished, you can see it and the interfering arms of the
board reaching into it. It is as if his fingers have left trails
of light behind them that hold the pictures he is drawing. His
wrists snap sharply with conviction, and his hands open and close
as if they might eventually stop in the shape of fists. The
students cheer, many of them by raising their hands over their
heads and waving them, fingers splayed, in Deaf applause.
In the midst of the Lexington fracas, Max Gould, the newly
appointed chief executive, resigns. There are waves of
astonishment. Gould claims that his appointment has been muddying
the real issues facing Lexington. Seizing the air of opportunity,
a board member proposes Phil Bravin as board president, and the
incumbent withdraws. The Gallaudet scenario has repeated itself.
Many Deaf people, when they are very excited, make loud sounds,
often at very high or very low pitches, wordless exclamations of
delight. In the halls of Lexington, students cheer, almost
incredulous that their actions could have been fruitful, and
anyone hearing is transfixed by the sound.
"It was a real sense of deja vu," Phil Bravin would say to
me one afternoon a few months later. "It was so much like
Gallaudet all over again, and it showed that that victory was
just the beginning. It was also the best thing that could have
happened to those students, no matter how many classes they
missed during the protests. You can't learn civil rights from a
textbook. Some of them came from families that said, `You're
don't shoot too high.' Now they know better."
At Lexington graduation, a week later, Hlibok is the
speaker. In the midst of a hackneyed, boring speech, he says,
rather casually, "From the time God made earth until today, this
is probably the best time to be Deaf." At a victory celebration
the next day, Jeff Bravin says, "We'll be running our own show
now." Jackie Roth says: "It's all great. But the battle's not
over." And indeed, within a month a new saga will begin over the
appointment of a principal. For J.H.S. 47, New York City's only
public once more, the Deaf will be excluded
from the selection process.
SAVE THE CHILDREN
"Mainstreaming" (or "inclusion")--"the backlash," as M.J.
Bienvenu calls it--is making schools ever more the locus of Deaf
struggles. The Americans With Disabilities Act, in an attempt to
give full educational benefits to people once shunted into
second-rate special schools, has recommended that schools be made
more fully accessible. Public law 94-142 maintains that everyone
who can use ordinary schools should do so. For the deaf, often
physically unable to learn the mainstream's means of
communication, this is the worst disaster since the Congress of
Milan. "Children from Spanish-speaking homes may learn English at
school as a second language," says M.J. "Children from non-
signing homes who are taught only in English at school may never
learn language at all." The Clinton Administration has not been
receptive to calls for separate Deaf schools. "It is a terrible
abuse," says Oscar Cohen, Lexington's superintendent. Jackie Roth
says, "It makes me sick with rage."
"There are some children who can function well in mainstream
schools," says Robert Davila, an Assistant Secretary of Education
under George Bush and a leader of the Hispanic Deaf community.
"They need help from supportive families, special abilities, good
language of some kind and constant individual help from teachers.
Many children, even if they overcome the incredible obstacles,
will be so lonely there. The Deaf school where I went was my
salvation."
According to the Rowley decision, which upheld a school
district's refusal to provide interpreter services to a deaf girl
on grounds that she was passing, it is the obligation of the
schools into which children are mainstreamed to give "sufficient"
education rather than to "maximize" those students' potential.
Their social welfare is not a concern.
Once considered the vanguard of Deaf separatism, M.J.
Bienvenu's Bicultural Center now fo it laid
the groundwork for the Bi-Bi (bilingual, bicultural) movement in
education, which is the Deaf community's answer to mainstreaming
and an alternative to the trend in Deaf education for "total
communication."
"Total communication" means speaking and signing at once,
and it's difficult to do. Non-A.S.L. signed languages, predicated
on oral syntax as they are, are sometimes nearly
incomprehensible. And the structures of English and A.S.L. are
you can no more speak English while signing
in A.S.L. than you can speak English while writing Chinese. In
English, words
A.S.L. often uses words
simultaneously, or amalgamates them into composite signs. So in
A.S.L., one gesture could mean "He moved from the East Coast to
the West Coast." If you sign "he," then "moved," then "from" and
so on, a visual grammar conveyed sequentially
is "unnatural" and counterintuitive.
In Bi-Bi, children are encouraged to develop sign as a
"natural" written English is taught as a second
language, and many students seem to excel at it, running close to
their hearing counterparts. (It should be noted that, on average,
deaf high-school graduates have a fourth-grade reading level.)
The technique is gaining: Eddy Laird, superintendent of the
Indiana School for the Deaf, has been one of the first to
institute Bi-Bi on a full scale. It has also been used at the
schools on the Gallaudet campus.
Spoken English is taught but not emphasized within the Bi-Bi
of spoken language is a real disability. It is striking that many
of the most extreme anti-oralists themselves have and use
excellent oral skills. "They're incredibly useful, and anyone who
can learn them should," Jackie Roth acknowledged. "I happen to
have a skill there, and it's been invaluable for me. But speech
can't be taught at the cost of human growth. Balance!"
A `FAMILY' GATHERING
Fresh from Lexington, I go to England to meet leaders of the
British Deaf community. Word of the protests has reached them
through the Deaf media (a broad range of local and international
newspapers, newsletters, special television programs, fax and E-
mail), but in Britain there has been no equivalent of Gallaudet's
Deaf President N the situation I describe seems inconceivable.
"We're 40 years behind," says Doug Alker, the only Deaf executive
at the Royal National Institute for the Deaf (which the Deaf call
Really Not Interested in the Deaf). "Most deaf people in Britain
see themselves as victims." Hearing people often make the mistake
of assuming that sign is a universal language, but there are
almost as many signed as spoken languages. American Sign Language
is related to French sign (because of Laurent Clerc), but British
sign is extremely different.
I also visit the famed Deaf Scottish musician Evelyn
Glennie, who can feel the trembling of the separate instruments
of an orchestra, can modulate her voice's timbre with real
beauty, can even understand words through vibration. Her solo
percussion performances astonish. "If I had a deaf child," she
says, "I would teach him by holding him against my body all the
time, so he could feel the vibrations of my speech. I would lie
with his hands on my throat, hold him against my heart, lay him
on the piano so he could learn about sound and music from the
air. With a hearing child, I'd do the same. Your ears are just
one of a multitude of ways of experiencing sound."
Back in the United States, I attend the biennial National
Association of the Deaf convention, which takes place this year
in Knoxville, Tenn., with almost 2,000 Deaf participants. At
Lexington, I saw Deaf people stand up to the hearing world. I
learned how a TTY (a telephone cum typewriter device for the
Deaf) works, met pet dogs who understood sign, talked about
mainstreaming and oralism and the integrity of visual language. I
became accustomed to doorbells that flashed lights instead of
ringing. But none of this could have prepared me for the
immersion that is the N.A.D. convention, where the brightest,
most politicized, most committed Deaf gather for political focus
and social exchange. The association has been the center of Deaf
self-realization and power since it was founded in 1880. There,
it is not a question of whether the hearing will accept the
existence of Deaf culture, but of whether Deaf culture will
accept the hearing.
I arrive the night of the president's reception. There are
1,000 people in the grand ballroom of the Hyatt Regency, the
lights turned up because these people are unable to communicate
in darkness. The crowd you hear the claps
that are part of the articulation of A.S.L., the clicks and
puffing noises the deaf make when they sign, and occasionally
their big uncontrolled laughter. People greet each other as if
they have been waiting forever for these encounters--the Deaf
community is close, closed and affectionate.
Deaf people touch each other far more than the hearing, and
everyone here hugs friends. I see demonstrators I got to know at
Lexington and people I talked to only
at the N.A.D., there are no barriers and boundaries, and I, too,
find myself hugging people as if I have known them forever. Yet I
must be careful of the difference between a friendly and a
how you touch communicates a world of meaning in
Deaf circles. I must be careful of looking abstractedly at people
they will think I am eavesdropping. I do not know any of
the etiquette of these new circumstances. "Good luck with the
culture shock," more than one person says to me, and I get many
helpful hints.
As I look across the room it seems as if some strange human
sea is breaking into waves and glinting in the light, as
thousands of hands move at stunning speed, describing a spatial
grammar with sharply individual voices and accents. The
association is host to the Miss Deaf America pageant, and the
young beauties, dressed to the nines and sporting their state
sashes, are objects of considerable attention. "Look how
beautifully she expresses herself," says someone, pointing to one
contestant, and then, of another: "Can you believe that blurry
Southern signing? I didn't think anyone really signed like that!"
(Regional variations of sign can be dangerous: the sign that in
New York slang means "cake" in some Southern states means
"sanitary napkin," which led to considerable confusion at
my own poor articulation led me to invite someone not
to have "lunch," but to have "a lesbian.")
The luminaries of the Deaf world--activists, actors,
professors--mix comfortably with the beauty queens. I am one of
perhaps a dozen hearing people at this party. I will soon come to
understand better how factionalized the Deaf community is. (M.J.
Bienvenu and Jackie Roth and Greg Hlibok, for example, do not
seem to like each other, though "all the factions always pull
together when necessary," M.J. reassures.) I will hear of the
crab theory (if one crab is strong enough to climb out of the
barrel, the other Deaf people use this
metaphor to describe their community all the time), and I will
see how petty ideology has split a community that once stood
firmly united. Nonetheless, the basic fact of Deaf culture
remains. I have heard Deaf people talk about how their "family"
is the Deaf community. Rejected in so many instances by parents
with whom they cannot communicate, united by their struggle with
a world that is seldom understanding of them, they have formed
inviolable bonds of love of a kind that are rare in hearing
culture. At the National Association of the Deaf, they are
unmistakable. Disconcerting though it may sound, it is
impossible, here, not to wish you were Deaf. I had known that
Deaf culture existed, but I had not guessed how heady it is.
The association members are a tiny minority, less than 10
percent of the nation's D most deaf people are what the Deaf
call "grass roots." The week after the convention, the national
Deaf bowling championships in Baltimore will attract a much
larger crowd, people who go to Deaf clubs, play cards and work in
blue-collar jobs. Below them in the Deaf status structure are the
peddlers (the Deaf word for the mendicants who "sell" cards with
the manual alphabet on subways--the established Deaf community
tried as early as the 40's to get them off the streets); on
Lexington Avenue around 103rd Street in New York, some homeless
deaf were living on the roof of a building. "Those people also,"
says Jackie Roth, "whatever they have lost, have this
connectedness in their own Deaf communities. It comes with the
territory, so long as they are not isolated from other Deaf
During the following week, I will do dozens of interviews,
struggling to pick up the subtleties of A.S.L. accent that betray
so much of the meaning of what people are saying. I will discuss
the Deaf travel industry with Aaron Rudner, of Deafstar Travel,
who started this business going, and with Joyce Brubaker, of Deaf
Joy Travel, who is organizing the first Deaf gay cruise. I will
watch videos of eloquent signers telling stories. I will attend
seminars on A.S.L. usage, on AIDS, on domestic violence. I will
talk to Alan Barwiolek, who founded the New York Deaf Theater,
about the difference between plays translated for the Deaf and
Deaf plays. I will see Deaf comedians. (Ken Glickman, a.k.a.
Professor Glick: "Deaf and dumb? No, I'm deaf and bright. You
must be hearing and dumb or you wouldn't have asked me that. You
think I'm hearing-impaired? I think you're deaf-impaired, and I
can sell you, cheap, a deafing aid. This ball of cotton wool can
help any profoundly hearing person who needs it. Put one in each
ear and we'll be making a start. My blind dates are always deaf
dates. You ever been on a deaf date? You go out with someone and
then you never hear from her again.") Over dinner, Bernard Bragg
will do his lyrical signed translations of William Blake while
his pasta gets cold. (Signers can talk with their mouths full,
but they can't easily cut up their food and talk at once.)
Gary Mowl, head of the A.S.L. department at National
Technical Institute of the Deaf, has come to the conference with
his children. He often corrects their grammar and usage in A.S.L.
The importance of having a correct language--"Gallaudet A.S.L.,"
an answer to standard English--has only recently been recognized.
"People ask why you need to teach A.S.L. to native signers. Why
do English-speaking students study English?" I think of the sign
used by the Deaf gangs of Harlem and the East Village, which is
completely incomprehensible to an A.S.L.-user.
Late one night, I am watching captioned television with Deaf
friends. "When I was little, before captioning came in," one
says, "we used to watch TV as a family. It was great. We would
compare notes on what we saw and propose our own versions of the
plot. Later, if we saw other Deaf friends who had seen the same
show, we would all discuss what we thought had happened. We would
construct personalities and events from our guesswork and
it was practice for the guesswork and humor we need
to interpret the world. We laughed so much, and it brought us so
close together." He stops for a moment, and we both look back at
the television with its neatly typed messages. "Of course having
captions on the news is great, but--this is so boring by
comparison to the old days."
I get into a lot of conversation about interpreters: the
shortage of competent interpreters is appalling. There is always
competition between CODA (Children of Deaf A refers only to
hearing people) professional interpreters and non-CODA ones. The
complexities and ambivalences of CODA-Deaf relations, humorously
but knowingly conveyed by Lou Ann Walker in "A Loss for Words,"
are a big part of Deaf culture. (I have the good fortune to work
with a CODA named Marie Taccogna, a gifted interpreter who
translates both language and culture.) At public meetings, there
are often interpreters who are "doing some kind of a dance," says
Rob Roth, who is at the National Association of the Deaf to
represent AT&T, "which is lovely as interpretive performance but
conveys no information in a language I speak. Hearing people love
their picturesque eloquence."
A New York City court recently refused to get a new
interpreter for a plaintiff who couldn't understand the trial as
it was interpreted to her. There are lawsuits pending involving
Beth Israel and New York University hospitals for failure to
provide interpreting services. Early this year, Leah Hager Cohen
--daughter of Oscar Cohen--published an eloquent book, "Train Go
Sorry," which follows the careers of a few students at Lexington,
and through a stunningly empathetic examination of their stories
and her own creates a brilliant narrative of Deaf culture. One of
the most moving passages in that book describes the death of Leah
Cohen's grandfather. Oscar tried to stay in the hospital to
interpret for his father, but was prevented on grounds that the
hospital had an interpreter. The interpreter was in fact off-duty
for the weekend, and Oscar's father died without being able to
communicate with his doctors, without knowing what was happening
to him or where he was going, without being consulted about his
own treatments.
On Thursday, there is a College Bowl involving Gallaudet,
the National Technical Institute of the Deaf and California State
University at Northridge. I am impressed by the questions (I
cannot answer more than half), and I remember how, 20 years ago,
the deaf were generally held to be somewhat retarded. Friday
night is Miss Deaf America. For the talent section, two girls do
monologues about AIDS. There is some signed poetry, some signed
music. The National Deaf Dance Theater, whose members pick up the
nuance of music through its vibrations, do a dramatic stage
piece, and Bob Daniels, a partly deaf performer, does a dance and
sign number to "With You on My Arm" from "La Cage Aux Folles."
The emcees are Bernard Bragg (who could, tonight, be Bert Parks)
and Mary Beth Barber (who was Miss Deaf America in 1980). For the
onstage interview, each of the semifinalists is asked how she
feels about doctors' attempts to cure the deaf. "If someone's
unhappy with being deaf and he wants to change it, that's up to
him," says Genie Gertz, Miss Deaf New York, succinctly. "I
wouldn't ever change it. Why would I?" I am in the cheering
section for Genie, the beautiful daughter of Russian Jewish
parents who came to this country from Leningrad when she was 8.
In an eloquently rendered monologue written for the talent
section, she tells the story of her parents' struggle against
Communism, and of the freedom everyone found in the United States
--which included, for her, the move from being a social misfit to
being Deaf and proud. I have made endless jokes about the Miss
Deaf America Contest and yet in reality it's surprisingly moving.
It is such a striking idea, such a radical one, that you can be
Deaf and glamorous.
The V.I.P. party after the gentle, radiant Miss Deaf
Maryland has won is back in the grand ballroom at the Hyatt. I am
talking to Alec Naiman, whom I first met at Lexington. A world
traveler, he was one of the pilots in this year's Deaf fly-in at
the Knoxville airport. We are discussing a trip he made to China.
"I met some Deaf Chinese people my first day, and went to stay
with them. Deaf peop you can always stay
with other Deaf people. We spoke different signed languages, but
we could make ourselves understood. Though we came from different
countries, Deaf culture held us together. By the end of the
evening we'd talked about Deaf life in China, and about Chinese
politics, and we'd understood each other linguistically and
culturally." I nod, "No hearing American could do that in China,"
he says. "So who's disabled then?"
At 2:30, I still have not left. I remember that one Deaf
sociologist is writing a thesis on Deaf goodbyes. Until the
1960's, deaf people had no means of communication except letters,
telegrams or personal appearances. If you wanted to organize
dinner with a friend, you ha you could take
two days just inviting people to a party. Saying goodbye was
you would suddenly remember whatever you had
forgotten to tell, and, knowing it would be some time before you
could make contact again, you would keep saying goodbye, and you
would keep on not leaving. "It's a Deaf party," people had said
to me of more than one event. "It'll go on forever." And so this
evening, it is impossible to tear yourself away. People are even
more physical, more flirtatious than usual. Upstairs there is
dancing to loud, pulsing music whose beat goes right along the
floor and up your legs. No matter how great the noise, you can
dance and sign--the blurring edge between what bodies say to each
other as bodies and what they say to each other with words. I
finally tear myself away near 4. But I am of the impression that
some people will never leave, that the sun will rise and set
before that intense, exuberant conversation will draw to a close.
FINDING THE CURE, FIGHTING THE CURE
How to reconcile this Deaf experience with the rest of the
world? Should it be reconciled at all? M.J. Bienvenu has been one
of the most vocal and articulate opponents of the language of
disability. "I am Deaf," she says to me in Knoxville, drawing out
the sign for "Deaf," the index finger moving from chin to ear, as
though she is tracing a broad smile. "To see myself as Deaf is as
much of a choice as it is for me to be a lesbian. I have
identified with my culture, taken a public stand, made myself a
figure within this community." Considerably gentler now than in
her extremist heyday in the early 80's, she acknowledges that
"for some deaf people, being deaf is a disability. Those who
learn forced English while being denied sign emerge semilingual
rather than bilingual, and they are disabled people. But for the
rest of us, it is no more a disability than being Japanese would
This is tricky territory. If being deaf is not a disability,
then deaf people should not be protected under the Americans With
Disabilities Act. It should not be legally required (as it is)
that interpreters be provided in hospitals and other public
service venues, that a relay operator be available on all
telephone exchanges, that all televisions include the chip for
caption access. It should not be necessary for the state to
provide for separate schools. Deaf people should not be eligible
for Social Security Disability Insurance (which they often
claim). Those who say that being deaf is not a disability open
themselves up to a lot of trouble.
Few words provoke a more passionate response in deaf people
than "cochlear implant." Approved in 1985, cochlear implants are
the closest thing to a "cure" for deafness. A tiny chip is
surgically implanted in the inner ear and connected to a magnet
just under the skin, which attracts another magnet in a
transmitter attached behind the ear. A wire leads from that to a
"speech processor" you can clip to your belt. The processor
converts sound into electrical impulses and sends them to the
implant, which conveys them to the brain, where they are
processed as sound would be. The result is an approximation of
Supporters say implants allow people to overcome a terrible
disability, giving those who would be marginalized access to
normal life. Opponents complain, first, of the limitations of the
implant itself: that it is dangerous, defor
that it makes people un-deaf without making them hearing. They
object also to the very idea of trying to cure the deaf. Paddy
Ladd, a British Deaf scholar, calls implants "The Final
Solution." The problem is worsened by the fact that the implants
are most effective when put in children at about age 2. ("Like
the Nazis," says M.J., "they seem to enjoy experimenting on
little children.")
Decisions about implanting are therefore usually made by
parents, most often by hearing parents (though Hearing Health
magazine published an anecdote of a 90-year-old deaf mother who
tried to brow-beat her 70-year-old son into getting implants).
This feeds into an ongoing debate about who the "parents" of deaf
children are--their biological progenitors or the Deaf community.
Cochlear implants are not very dangerous. Surgical
complications are unusual, though several surgeons scoffed at the
Cochlear Corporation's assertion that the surgery is "comparable
to a tonsillectomy"; some people have suffered disfiguring facial
paralysis that appears to be connected to the surgery. The
implant has been around for only about 30 years, but so far they
have not caused the complications that have resulted from other
placements of foreign material in the body. (Deaf activists talk
about the horrors of silicone implants and pacemakers.) The
implant interferes with certain diagnostic tests (magnetic
resonance imaging, etc.), but the electronic stimulation the
implant creates appears to have a positive effect on the nerve
tissue that surrounds it. Having a wire coming out of your neck
can make you look like an extra from a bad "Star Trek" episode,
but it is possible to grow hair so the wire is generally hidden.
Much National Association of the Deaf propaganda about the danger
some of it is positively inaccurate.
The question of the effectiveness of the implants is more
complicated. Cochlear implants are sometimes very effective,
often somewhat effective and sometimes practically useless. A
late-deafened adult who "regained" his hearing with an implant
said it made everyone sound like R2D2 with laryngitis. For late-
deafened people, however, impla the
approximation of sound they provide is sufficient for people
already functional in spoken language to understand much of what
they hear. Lord Ashley, the Member of Parliament who has been one
of Britain's most inspired campaigners for civil rights, was
deafened 20 years ago
he spoke on the phone
with apparent ease, and said that he has no trouble speaking to
people he knows, one on one, though he might have difficulty with
a new voice or with a busy conversation.
Prelingual deaf adults who have the implants often find them
ineffectiv whether this is because they are
unaccustomed to interpreting sound and would find that difficult
even if they were given perfect hearing is unclear. For small
children, there have been mixed results. The F.D.A. failed to set
language acquisition as one of the criteria for approval. Almost
all children with implants have some "useful" perception of
sound, but the sound they receive is often too garbled for them
to interpret it as language, and so some fall into that
frightening category of the cognitively retarded who develop no
real language. The Cochlear Corporation can provide the
statistics to show that many implanted children learn more and
better oral language, but "more and better" is not really enough,
especially if this is to be your sole mode of communication
The problem--in practical terms--is that parents too often
want to believe that the implants make their children hearing,
which they do not do. Imp to treat them as a
cure is a dire mistake. The children who receive them are often
not given any special Deaf education. Dr. Robert Ruben, an ear-
nose-and-throat specialist at Montefiore Hospital in the Bronx,
said: "If I had a deaf child, I would implant one ear, leaving
the other free in case cures develop that require an intact inner
ear. I would bring up that child bilingually. Parents could phase
out sign later on if they wanted, but it should not be abandoned
until it becomes clear that the child can develop satisfactory
oral language. The worst mistake is for parents to neglect the
one most important thing--that language of any kind, no matter
what kind, must somehow be got into the child soon enough." There
are also miracle stories of children for whom the implant has
been peerless, but they are unusual and unpredictable.
The implant destroys all residual hearing a child might
have. Though accurate hearing tests can be done on infants, it is
impossible to determine how well those children might use their
residual hearing. Anyone with a hearing loss over 90 decibels is
classified as "profoundly deaf." I met people with a 50-decibel
hearing loss who could understand me only with interpretation or
Jackie Roth is categorized as "profoundly deaf," but
I could talk to her as I would to a hearing person. "I don't
know," she says to me. "I just get a lot when people speak to
me." Hearing loss is measured as an average of loss in various
registers, so someone with a 100-decibel loss could have good
perception for very high frequency sound--and most sounds operate
at many frequencies. Further, detection of sound and
discrimination of sound are two separate abilities. Some people
can discriminate sound well beyond their ability to detect it. So
deciding which children are so deaf that they need implants is
not easy, because by the time you can detect discriminatory
abilities, it is too late for the implants to be the basis of
primary language acquisition.
Cochlear implants remind me, more than anything else, of
sex-change surgery. Are transsexuals really members of their
chosen sex? Well, they look like that other sex, take on the
roles of that other sex and so on, but they do not have all those
internal workings of the other sex, and cannot create children in
the organic fashion of members of the chosen sex. Cochlear
implants do not allow you to hear, but rather to do something
that looks like hearing. They give you a process that is
(sometimes) rich in information and (usually) free of music. They
make the hearing world easier, but they do not give you hearing.
What they give you has value, so long as you know in advance what
While the implant debate rages, doctors are searching for
more sophisticated and effective cures for the deaf. There are
many kinds of deafness, but most come from the loss of the
auditory hair cells in the cochlea. These cells, which receive
sound in a form in which it can be conveyed along nerve pathways
to the brain, are produced in the first three months of the
embryonic period and then incapable of regenerating. Once you
lose them, conventional wisdom has always had it, they're gone.
In the early 1980's, Jeffrey Corwin, working with sharks in
Hawaii, noticed that adult sharks have larger ears than baby
sharks--larger in their number of hair cells. This indicated that
it is possible for hair cells to be produced by vertebrates in a
and subsequent research demonstrated that fish
can produce hair cells throughout life, even to replace hair
cells that have been lost. A few years later, Douglas Cotanche
discovered that baby chicks whose hair cells were partly
destroyed re observable lesions of the inner
ear simply disappeared. When deafened chicks were tested, it was
confirmed that they had recovered hearing.
This blew away the notion that hair cells cannot regenerate.
In 1992, researchers in Jeffrey Corwin's lab fed retinoic acid to
pregnant mice, and the result was that the mice were born with
extra hair cells. Building on this, a few scientists began work
to see what effect retinoic acid might have on the inner ear of
mammals past the usual prenatal stage for developing sensory
cells, and in April 1993, a team of researchers working under the
supervision of Robert Ruben published an article in Science in
which they described their unprecedented success at causing the
regrowth of hair cells by treating excised portions of the
damaged inner ear of an adolescent rat with retinoic acid and
calf serum. It is possible to kill the hair cells of mammals
after birth and then get them to regrow.
It has not yet been possible to stimulate this growth in a
live animal, but, according to Dr. Ruben, successful in vivo work
is just around the corner. "I would hope to see trials in humans
by the end of the century," he said. If it were possible to cause
regrowth of cochlear hair cells in human beings, almost all
deafness could be treated. Since most deafness is degenerative
(those born deaf have los almost no fetus
exists that doesn't develop the cells at some stage), the
question would be whether the new hair cells would remain alive
in the inner ear, or whether they would die off again as their
predecessor cells had done. There can be no question, however,
that if hair regeneration were possible, there would be
treatments for many deaf people. "From the time God made earth
until today, this is probably the best time to be Deaf," Greg
H and yet this is also the moment when the Deaf
population is dwindling as it has never done before. Even now,
deafness is defined as a "low-incidence disability"; there are 20
million deaf or hard-of-hearing people in the United States, but
the profoundly deaf population is only about 2 million. Even
without cutting edge research, the control of childhood diseases
is shrinking that population. As it gets better and better to be
deaf, it also gets rarer and rarer.
MAKING THE IRREGULAR REGULAR
What to say, then, of the cries of genocide, the resistance
to the whole idea of curing the deaf? I have heard of a couple
who opted for an abortion when they heard that their child was
hearing, so strong a view did they hold on the superiority of
Deaf ways. But I also met many Deaf individuals who objected to
the way that the Deaf leadership (focused around the National
Association of the Deaf) has presumed to speak for all the deaf
people of America. There were plenty who said that being deaf is
of course a disability, and that anything you could do about it
would be welcome. They were righteously indignant at the thought
of a politically correct group suggesting that their problems
weren't problems. I also met people who subscribed to the old
deaf self-hatred, who were ashamed and saddened when they gave
birth to deaf children, who felt that they had always been
second-class people and that they could never be anything more if
they were deaf. Their unhappy voices in some
ways, it doesn't matter whether M.J. Bienvenu "cures" them of
their ignorance or Dr. Ruben "cures" their ears, but they are out
there in numbers and need help from someone.
Most hearing people respond to cries of genocide with an
arrogant shrug. Of course if you can help deaf people you should
help them. Give them hearing. Let them escape from their prison
of silence. The triumph at Lexington this year coincided with the
Stonewall 25th anniversary celebrations in New York, and one
could not help being struck by the parallels. Here were thousands
of people converging on New York to celebrate an identity that,
25 years ago, was described not as an identity, but as an
illness. Unlike other minority groups, gay men and women are
members of a culture that does not i most
are born to parents who would have liked them to be born
otherwise. In a procreative society, their condition has been
described as a handicap. Twenty-five years ago, before the
principle of gay rights had been broadly articulated, few people
questioned that it was right and fit to try to cure homosexuality
--a terrible misfortune despite which (rather than because of
which) some people managed to function at a high level.
Lewis Merkin is an actor and playwright, co-author of a
remarkably moving play, "Language of Love," which the New York
Deaf Theater will open here in December. It is "the personal
odyssey of a Deaf gay man." Born to grass-roots deaf parents in
Philadelphia, with very good residual hearing, he grew up between
the Deaf and hearing communities. "I could fit in almost well
enough in the hearing community, almost well enough to pass," he
said. "When I was about 18, I had to sort of come out of the
closet as a Deaf person. I had to admit how much I couldn't hear,
and to recognize that I would always speak with an `accent.' I
stopped going to parties and pretending I could follow everything
going on. I stopped struggling against something I would never be
able to change." Within a few years, Merkin had grown fully into
a Deaf identity, and he became an actor, appearing in the role of
Orin in "Children of a Lesser God" on Broadway.
He describes the parallel journeys of gay and Deaf identity.
"When I was growing up, I looked around at these grass-roots deaf
people, who were marginal, unimportant, not part of society,
completely dependent on others, with no education, people who saw
themselves as second-rate. And I recoiled. I thought, that's not
me, and I felt sick at the thought that I was deaf. It took a
long time for me to understand what it meant to be Deaf, what a
world was open to me. When I first began to think about being
gay, I saw limp-wristed drag queens and guys in leather hanging
out on street corners, and again I thought, that's not me, and I
hated the idea of being gay. And it was only with time that I
came into a real gay identity."
The Deaf community is ri deaf people
tend to be conservative, and can be very intolerant of minorities
or of other handicaps. Deaf parents are no happier about gay
offspring than are hearing parents--though, interestingly, the
incidence of gayness within the Deaf community is perhaps 15
percent higher than in the hearing world. There is a kinship
between the groups. It has been suggested that as many as 90
percent of hearing-Deaf marriages end in divorce, but the
majority of successful Deaf-gay relationships appear to be
between Deaf and hearing individuals. "What we have experienced
is so similar," M.J. told me. "If you are deaf, you know almost
exactly what it is like to be gay, and vice versa."
Some opponents of the implants have demanded that young
children not be implanted, and have proposed that people choose
when they are 18 whether to have the implants or not. But if you
are 18 and asked to make a choice, you are choosing not simply
between being deaf and being hearing, but between the culture you
have known and the culture you have never known. By then it is
your experience of the world has been defined by being
Deaf, and to give it up is to reject who you have become. It
lacks dignity: it is an admission of inadequacy, a discarding of
your self.
It's hard to have children who are different from you. If
gayness could be detected in infancy and easily "corrected," then
many parents would happily pay through the ears for the surgery.
"In a world full of childhood cures," said Rob Roth, "I would be
neither Deaf nor gay. That doesn't make me feel bad about myself,
but I know it's true." Many gay men and lesbians would have been
glad, at 8 or 10 or 12 or 14, to become "normal," even if, a few
years later, they had grown into selves defined by the experience
of gayness. Most Deaf children of hearing parents have had
periods of rejecting their Deaf identity. Twenty-five years ago,
the arguments for curing gayness seemed as unarguable as the
arguments for curing the Deaf seem to be now. When and how did
the shift from the pathological to the cultural view of gayness
take place? How did we get from hormone injections and
electroshock to gay soldiers and domestic partnership?
It is tempting, in the end, to say there is no such thing as
a disability. Equally, one might admit that almost everything is
a disability. There are as many arguments for correcting
everything as there are for correcting nothing. Perhaps it would
be most accurate to say that "disability" and "culture" are
really matters of degree. Being Deaf is a disability and a
culture in modern A so
so even, increasingly, is being a straight white
male. So is being paraplegic, or having Down syndrome. What is at
issue is which things are so "cultural" that you wouldn't think
of "curing" them, and which things are so "disabling" that you
must "cure" them--and the reality is that for some people each of
these experiences is primarily a disability experience while for
others it is primarily a cultural one. Some blacks are
hand some who are gay are handicapped by
some paraplegics thrive on the care they receive and
would be lost if their mobility were returned. Some deaf people
are better off deaf and some would be better off hearing. Some
could perhaps be both: "I would never want to move away from my
Deaf identity," Jackie Roth said. "But if I could have full
hearing, without complications, I would like to have it."
There is something eerie and sinister about the image of a
world sanit there is a terrifying point when
good works become fascistic control. If therapists who set out to
"cure" gayness had succeeded, and succeeded fast, there would
probably never have been a gay civil rights movement, and we
would have lost all the singular contributions to the mainstream
that an acknowledged gay culture has provided. The National
Association of the Deaf convention demonstrates amply that the
Deaf have as much of a culture as anyone. There is a race going
on. Running on one team are the doctors who will make the deaf
hear. They are humanitarian miracle workers, and they are
bringing something very valuable to the many nonhearing
individuals who would like to know sound and to speak. On the
other team are the exponents of Deaf culture. They are visionary
idealists who are trying to preserve a remarkable and seductive
community.
If Deaf culture can be made as visible, important and proud
as gay culture now is before the cure is perfected, then perhaps
the accomplishments of the rubella bulge activists will allow for
a long history of Deaf culture. Perhaps, like the search for a
cure to gayness, the search for a cure for the deaf will be
dropped by respectable institutions--which would be both a bad
and a good thing. If the cure comes before the search for it is
obviated, then virtually all hearing parents and many grass-roots
deaf parents will cure their children, and the tremendous
accomplishments that have followed the Gallaudet uprising will be
the conclusion rather than the beginning of a story. Then the
history recounted in this article will be as poignant and remote
as a tale of Babylon. This, too, would be both a bad and a good
thing. As genetic engineering progresses, we may be able to cure
everything, and how we will decide which good and which bad we
prefer will be increasingly important. "Our situation also bears
on yours, on the whole world's," M.J. Bienvenu said, her signs
almost mockingly urgent. I think she is right. This race may be a
good indicator for how we value difference altogether.
About the author: Born in New York, Andrew Solomon studied at Yale University and
then at Jesus College Cambridge. He is the author of The Irony Tower: Soviet
Artists in a Time of Glasnost and a bestselling first novel, A Stone
Boat (Faber and Faber UK Ltd. and Faber and Faber US, 1994; US paperback with
Plume/Penguin). The book was on the Village Voice bestseller list, and was
recently named a finalist for the Los Angeles Times first fiction award.
Mr. Solomon is a contributing writer for The New Yorker and other
publications. His essays have been translated into English, Spanish, Russian,
German, French, Swedish, Finnish, Chinese, Dutch, Latvian, and Italian.