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The (Deaf) Culture Wars

February 4, 2007

What is it like to be Deaf with a capital D?

By Elaine Jarvik
Deseret Morning News

OK, so there’s this Deaf couple staying at a motel, and in the middle of the night the woman asks her husband to go buy her some aspirin. So he gets out of bed and drives to an all-night drugstore, and when he gets back the motel is dark and he can’t remember which room is his. At first he doesn’t know what to do, but then he drives to the middle of the parking lot and begins honking the horn. Pretty soon lights start going on in room after room, and people are peering out their windows to see who’s making all that noise. The man waits until every room is lit up — and then drives to the one room that’s still dark.

Alison Jensen, left, Zari Williams and Sarah Leathers prepare for a play, part of the activities during the Deaflympics. (Jeffrey D. Allred, Deseret Morning News)

Jeffrey D. Allred, Deseret Morning News

Alison Jensen, left, Zari Williams and Sarah Leathers prepare for a play, part of the activities during the Deaflympics.

That’s the famous motel joke, signs Minnie Mae Wilding-Diaz. She is sitting in her living room in Riverton with her husband, Julio Diaz, who is also deaf. In the kitchen, her three deaf children are playing with Legos.

In Wilding-Diaz’s motel joke, the tables have been turned. The Deaf man has used sound — and the hearing world’s predictable attentiveness to it — to his advantage. In the joke, the hearing world has to accommodate.

In reality, says Wilding, it has been the hearing who have historically been in charge, the hearing who have decided what the rules are, what’s normal and what’s not. “Audism,” some people call that. Or “phono-centric.” Or even, sometimes, “colonialism.”

The 16th Winter Deaflympics are in full swing in Salt Lake City this week, which makes this a good time to see some elite skiing and hockey and also to explore what it means to be Deaf with a capital D. For people who can hear, that exploration sometimes feels like visiting a foreign country, across an ocean of silence and a cultural divide.

To be Deaf with a capital D, says Julie Eldredge, a Deaf teacher of Deaf culture at BYU, is to believe first and foremost that deafness is not a disability or a pathology. Being deaf, she says, is just another way of being. There’s nothing that needs fixing, and “hearing-impaired” is not a suitable synonym. Sound and speech aren’t the goal; communication is.

“Deafness doesn’t hurt, it doesn’t kill you, it isn’t a disease,” says Julie’s hearing husband, Bryan, who heads the American Sign Language and Deaf studies program at Utah Valley State College. “It’s just a kind of existence. A perfectly acceptable existence. But hearing people have always been uneasy with people who aren’t like them.”

Not everybody who can’t hear is culturally deaf, he says. People who grow old and lose their hearing may be deaf but they’re not Deaf. Ditto for many people who grew up deaf but wore hearing aids or learned to lip read. Diane Larsen, who has been a lip reader since a bout of meningitis at age 4 and who now has a cochlear implant, says she has never considered herself culturally Deaf.

To be Deaf with a capital D means being part of a tight-knit community that values candidness and friendship and stretches across the United States and beyond. It also means being embroiled in culture wars about the education and future of deaf children and the future of Deaf culture itself.

Julio Diaz likes to tell this joke: A lumberjack goes into the forest to cut down a tree. He chops and chops, and when the tree is almost ready to fall he yells “Tim-ber!” But nothing happens. He chops a little bit more and yells “Tim-ber” again. Still nothing. So he goes to get a doctor, who comes back and examines the tree. Ah, says the doctor. The tree is Deaf. So the lumberjack signs “Timber!” in ASL. And the tree falls over.

American Sign Language, the joke suggests, is the best way to communicate with a Deaf tree or a Deaf person. That’s Diaz’s philosophy, too. Unlike his wife, who grew up in a family with eight deaf siblings and two deaf parents, Diaz grew up in Puerto Rico in a family that never learned to sign. At the dinner table, he says, he would just eat and leave, since he felt left out of the family conversation. At school, where he was expected to lip read, “so many things in class flew by me. I would ask what something meant and they would tell me how to say it, but that’s not what I was after.”

Tahna Mazziotti, a teacher at Jean Massieu School in West Jordan, has a parent-teacher conference using a videophone. (Jeffrey D. Allred, Deseret Morning News)

Jeffrey D. Allred, Deseret Morning News

Tahna Mazziotti, a teacher at Jean Massieu School in West Jordan, has a parent-teacher conference using a videophone.

Lip reading, says Deaflympics snowboarder Jeff Pollock, who teaches ASL at the University of Utah, is difficult when the teacher’s back is turned. Only 30 percent of speech happens with the lips anyway, “and the rest is just a guesswork,” says Pollock, who spent his school years having “no idea what was going on.”

It’s a familiar story among Deaf adults who grew up in a strongly “oral” education system. Vealynn Jarvis, a Pleasant Grove hearing mother of a Deaf daughter who is now 35, remembers when Heather had her hands slapped for using ASL in school.

Like Diaz and Pollock, 90 percent of deaf children nationwide grow up in a hearing family. According to Annette Stewart, a clinical social worker at the Sanderson Community Center of the Deaf and Hard of Hearing in Taylorsville, 73 percent of those hearing parents don’t learn to sign beyond superficial conversation.

Pollock says he feels closer to his Deaf friends than to his family, who never learned to sign. Wilding-Diaz says many of the Deaf friends she grew up with in Idaho — friends whose families were hearing — didn’t even know what their parents did for a living.

Not surprisingly, most of these hearing parents want their children to be like them, to grow up in a world full of sound and music and speech. Now, with the advent of more finely tuned digital hearing aids and cochlear implants, the stakes are even higher — and the rift between and in the Deaf culture is even more apparent, even though some in the Deaf community do now accept implants as “one option,” Pollock says.

Cast members of

Jeffrey D. Allred, Deseret Morning News

Cast members of “Sideways Stories From Wayside School” rehearse at Kingsbury Hall. The production, presented in conjunction with the Winter Deaflympics, features speaking and signing actors.

A recent study conducted by Utah State University’s National Center for Hearing Assessment and Management found that 85 percent of parents with newly identified deaf children say they want their children to learn to speak and hear.

“Parents want amplification (for their deaf children) at a year old or younger,” says Rich Harward, director for the Newborn Hearing Screening Program for the Utah Department of Health. For most children that means hearing aids, or cochlear implants for children who can’t benefit from hearing aids. Very few children, he says, “can’t benefit from some sort of amplification,” although no one touts the hearing aids or the implants as a “cure” for deafness. There are some children for whom hearing aids and implants don’t work, especially well enough to understand speech.

Harward predicts that the new technologies will decrease the number of people who feel they are part of Deaf culture.

On a recent afternoon at Millcreek Elementary, speech tutor Chris Franco worked with 6-year-old Joshua Dyal,
who wears a cochlear implant. Putting her hand over her mouth so he couldn’t see her lips, Franco asked Joshua questions like “Where does a whale live?” and “Where do you keep your pillow?” Joshua responded clearly: “A whale lives in the ocean” and “I keep my pillow on my bed,” although he struggled a bit with the “p” in “pillow.”

Across the valley, on the same afternoon, a group of third-, fourth- and fifth-graders at the Jean Massieu School in West Jordan were practicing signing “The Star Spangled Banner” for the Opening Ceremonies of the 16th Winter Deaflympics, raising their fists triumphantly on the word “brave.”

JMS, a charter school, is what is known as a bi-bi school for the Deaf: bilingual (ASL and English) and bicultural (Deaf and hearing); every teacher signs in ASL. The school was started by Wilding-Diaz and Diaz, who were frustrated that the Utah Schools for the Deaf and the Blind had no bi-bi option. There are now 55 students, preschool through 10th grade.

Millcreek Elementary student Joshua Dyal is tutored at the school. Dyal has a cochlear implant. (Jeffrey D. Allred, Deseret Morning News)

Jeffrey D. Allred, Deseret Morning News

Millcreek Elementary student Joshua Dyal is tutored at the school. Dyal has a cochlear implant.

A school like this is the gold standard to someone like Dwight Benedict, chairman of the 16th Winter Deaflympics. A school where everyone signs provides a “critical mass” of children who can communicate with each other and learn from each other, and have access to Deaf adults in a way that some deaf children never do, he says.

(Some deaf children, says Bryan Eldredge, figure either they’ll die before they become adults or will turn into a hearing person — since they’ve never really known a deaf adult. Wilding, an assistant professor at UVSC, says some deaf adults have been so unexposed to the kind of “incidental learning” that happens from communicating with their peers that when they get together with other deaf people, there are questions like “what is bank interest?” and “how do you buy a car?”)

The mainstream deaf program at Millcreek Elementary and the bi-bi program at JMS are two of several options in an education system that is complicated enough to require a score card.

Briefly, the options go something like this: About 1,000 deaf Utah schoolchildren are in programs that fall under the auspices of the Utah Schools for the Deaf and the Blind, a state agency; about 600 deaf students are in programs run by the various school districts; other deaf students may be doing so well they don’t qualify for such “special education” programs.

The USDB has a very small residential program for deaf students. It also now oversees the JMS school, which merged with USDB two years ago. Most of USDB’s students, however, are mainstreamed in either oral programs such as the one at Millcreek Elementary or in something called Total Communication (a combination of lip reading, speech, listening, ASL and other forms of sign language). Most of the children in both groups have some sort of amplification device, says Liz Parker, director of deaf programs for the central division of USDB. Deaf high school students, and children in many of the state’s outlying school districts with a small deaf population, are assigned interpreters who sign.

Deaflympic athletes Jozef Markovic, left, and Martin Legutky of Slovakia talk with Dorota Czerwinska from Poland at Little America Hotel. (Jeffrey D. Allred, Deseret Morning News)

Jeffrey D. Allred, Deseret Morning News

Deaflympic athletes Jozef Markovic, left, and Martin Legutky of Slovakia talk with Dorota Czerwinska from Poland at Little America Hotel.

The point, says Parker, is that each child is an individual, and no one communication strategy works for all.

Many school districts and schools for the deaf around the country have turned to strategies such as Manual Coded English and Signed Exact English, says Lawrence Fleischer, chairman of the Deaf studies department at California State University-Northridge and president of the USA Deaf Sports Federation. And that’s a big mistake, he says.

“It’s an artificial language,” Fleisher said. Whereas ASL has its own grammatical structure, MCE and SEE try to use English word order and English equivalents of words. “It doesn’t work,” he says.

Julie Eldredge gives this example: the word “outstanding.” In ASL, there’s a simple sign. But in MCE she would have to sign the word for “out” and then the word for “stand” and then “ing.” That not only takes longer, she says, it’s confusing.

“But who controls deaf education? Hearing people,” says Fleischer. “They’ll keep what they feel close to. I’m hoping for open dialogue about what’s working. But we’re powerless.”

In some school districts in Utah, says Pollock, interpreters for deaf children have been told to use MCE instead of ASL. Pollock is vice president of a new group called the Henry C. White Educational Council, which wants a say in deaf education in the state. He says that deaf students don’t graduate from Utah schools on par with hearing 12th-graders.

Director Rachel Briley signs instructions to Braden Williford during rehearsal for the production

Jeffrey D. Allred, Deseret Morning News

Director Rachel Briley signs instructions to Braden Williford during rehearsal for the production “Sideways Stories From Wayside School.”

In his former job as coordinator of deaf services at the U., he says, he saw transcripts of deaf students who had gotten straight A’s in high school but were entering college with junior-high-level English and math skills.

Teachers’ low expectations — “coddling” deaf students, Wilding-Diaz calls it — are only part of the problem, say Deaf advocates, who also point to the lack of qualified interpreters for students who need them.

Deaf advocates say the schools can’t afford to pay interpreters adequate wages, and that the best-trained interpreters are taking jobs in the private sector. The result, says Mitch Jensen, manager of the Utah Interpreter program, is that students “may be getting only 10 percent of the information. … It’s like your cell phone breaking up.”

With or without good interpreters, argues Pollock, some deaf students — particularly those in neighborhood schools in outlying areas where there may be only one or two deaf students — feel isolated and lonely.

“This is also true of relationships with parents, siblings, family,” he says. “It is much more common than anyone wants to admit.”

And so it’s no wonder that people who are deaf have more “mental health needs” than hearing people do, says social worker Stewart. Isolation is a big factor, especially for deaf individuals who grow up in families where there is little communication, she says.

While it’s estimated that in the hearing population 1 to 3 percent need some sort of mental health services, in the deaf population it’s 15 to 54 percent, yet only 2 percent of those people get help, she says.

The big need is for therapists who sign, including deaf therapists. Even a good interpreter is only a next-best solution in such confidential exchanges, she says. “If a hearing person doesn’t want to use an interpreter (in therapy), why would a deaf person?”

Visiting artist Tami Santimyer, center, plays a game with deaf students at the Jean Massieu School. (Jeffrey D. Allred, Deseret Morning News)

Jeffrey D. Allred, Deseret Morning News

Visiting artist Tami Santimyer, center, plays a game with deaf students at the Jean Massieu School.

Even though there are 10 deaf social workers in the state, “no one is hiring them,” and an attempt to get a state mental health coordinator position for the deaf has failed twice, she says.

But in many ways, this is a great time in history to be deaf. Technologies like the videophone are transforming the way deaf people can communicate with each other and with the hearing world.

In Utah, hearing screening of all newborns — mandatory at all hospitals since 1999 — has lowered the average age of detection from 18 months to less than 6 months. That means that each of those families can then be enrolled sooner in the parent-infant program run by the USDB.

The main goal, says parent-infant specialist Holly Hyte, is to introduce the child to language as soon as possible. “Our job is to guide parents through the discovery process of determining whether their child hears ‘enough’ language with the use of amplification alone or if adding sign language will give them a more complete grasp of the world.”

If parents opt for a cochlear implant for the child, Hyte encourages them to also begin exposing their children to ASL as soon as possible, because there are times when the implant must be turned off (in the bathtub and on electrostatic playground equipment like that found at McDonald’s), and there is also the chance the implant may prove unsuccessful. If the parents want to go the total ASL route, they’re hooked up with a “Deaf mentor” who visits the home once a week to teach signing and to talk about Deaf role models.

Catherine and Spencer Scott and their two deaf children have had several Deaf mentors so far, and the whole family is learning ASL at the same time. The children also have cochlear implants.

“This is a way for us to get the best of both worlds, the Deaf world and our world,” says Catherine. Not that she didn’t cry as she and Spencer debated whether to try the implants for her children.

Millcreek Elementary third-grader Adam Stauffer, who has a cochlear implant, gives a school report on the human ear. (Jeffrey D. Allred, Deseret Morning News)

Jeffrey D. Allred, Deseret Morning News

Millcreek Elementary third-grader Adam Stauffer, who has a cochlear implant, gives a school report on the human ear.

Her son and daughter may grow up and want to be part of the Deaf culture — may more closely relate to people who prefer only to sign, may not even want to use their implants — and that’s fine, she says.

Some of their mentors haven’t agreed with the Scotts’ decision to get the implants. Implicit in the disapproval, perhaps, is a disappointment that deafness is seen as something that needs fixing. “But they’ve been very kind to us,” she says. Even in the midst of the culture war, there are many ways to call a truce.


E-mail: jarvik@desnews.com

 

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  1. Nike
    February 4, 2007 at 2:24 pm

    Very well written article!

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