Hands and Voices....Sound and Fury ...The Artinian Family

[Guest guest]

This from Hands and Voices... The Artinian Family.

Dixie

'Sound and Fury' Update: A Family Comes Together Again

By Putz

In October 2000, the film " Sound and Fury " was released and shown in

film festivals around the United States . The story of two brothers

in an extended third generation deaf family was a raw and poignant

look inside the choices that families of deaf children face.

The movie focuses on the Artinian family: and Artinian

are brothers, sons of hearing parents. and his wife, Nita, are

both deaf. They have three deaf children, , and C.J.

is hearing and is married to a hearing woman, Mari, whose

parents are deaf and use American Sign Language to communicate. Chris

and Mari are the parents of , and (twins), and

and (also twins). Their son (named after Chris'

brother and grandfather, so is III) is also deaf. " Sound

and Fury " followed both families as they explored choices for their

children.

In the film, and Mari decide to pursue a cochlear implant for

their one and half year old son. Mari's deaf parents object to the

idea of a cochlear implant. They are afraid that their grandson,

(III), will lose his deaf identity. Mari's parents also wonder

how will communicate with them if the implant is successful.

's parents strongly encouraged and Nita to consider it for

their daughter, . At first, and Nita were open to the

idea of a cochlear implant for their daughter, who was six and

beginning to explore the option. As the filming continued, the

documentary began to show both the impact of Deaf Culture and the

many factors influencing a decision to put a cochlear implant on a

child.

Controversy reigned in the family, with 's parents becoming more

and more vocal about choosing an implant for . and Nita

began to feel pressured into choosing a surgery that they were not

ready for. felt strongly that his children were doing just fine

using American Sign Language, noting that they had both great self

esteem and a connection with the deaf community.

In the end, the controversy tore the family apart. After the film was

released, and Nita decided to move the family to Frederick ,

land and enrolled all three in a school for deaf children.

remained in New York , and commuted to land on the weekends.

Emotions still ran high, and the extended family rarely spoke of the

rift that " Sound and Fury " brought to them.

" After three years, " says Nita, " we decided to move back to New York

to be a family again and see each other every day. The commute for

three years was hard on . " Once the family moved to New York ,

often played with his cousin . " I want an implant like

, " said to Nita one day. Nita noticed that often

struggled with lip reading and it was hard for to watch his

cousin handle conversations with ease. Nita began to research more

about the cochlear implant.

" Looking back, " says Nita, " we were so overwhelmed with all the

information about the implant at the time the documentary was made.

It was too new for us, and we had so much information from both sides

(deaf and hearing people) that we weren't ready for any of it. "

Three years later, the time was right. Nita felt ready to explore the

option, especially with both and requesting an

implant. Nita and made the decision to go ahead with surgery

for both children. C.J., the youngest child, was not yet a candidate

at that time. In September of 2002, both children underwent surgery

the same day. Just before she was wheeled into surgery,

turned to her parents and signed, " Thank you for doing this for me. "

A month later, both children had their implants activated.

explained how the implant was different from her hearing aid

saying, " Sounds are much more detailed. For example, I hear the " s "

and " th " clearly with the implant and it was missing with the hearing

aid. "

Today, all three children have the Nucleus 24 and wear the behind-the-

ear unit. is eleven and attends her local school. She is the

only child with hearing loss at the school. " I use an interpreter

about half of the time, " says . " Most of the time I look at

the teacher or whoever is talking, and I use the interpreter when I

miss what is being said. "

is active in sports and enjoys basketball, soccer, lacrosse

and swimming. When asked about accommodations for swimming,

explained that the starter waves a flag when the race begins. She

relies on lip reading when in the pool. She uses captioning on the

television, preferring to have full access to everything that goes

on. She attends movies with her friends from school and states that

she understands what goes on in movies about 75% of the time. She and

her friends like to hang out at " Charlies, " a 50's style restaurant

that serves burgers and ice cream. uses the computer instead

of the phone to contact her friends, preferring to have several

instant messages going at once. uses the phone with her

grandmother, but has difficulty understanding people who do not have

a familiar voice.

After watching and become comfortable using their

implants, Nita began to realize that she wanted to pursue the option

as well. When she discussed it with , he jokingly told

her, " You're too old! " In March, 2002, Nita went for surgery and was

activated a month later.

For Nita, it was a slower process to understanding sound. " It took me

a year and half, " said Nita, " to make any sense of sound. Now I

understand the sound of a bird, the water flushing. Lipreading is so

much easier, with sounds coming in clearer and matching up easier

with what is said on the lips. "

In July 2004, the youngest child, C.J. obtained an implant at the age

of 6. Both and C.J. attend a school with a program for deaf

and hard of hearing children. All three children receive speech

therapy in school as well as private speech therapy at home. " My kids

are excited to hear new sounds, " says . " They are happy with

their cochlear implants, and because they are happy, I have no

regrets. "

Looking back, Nita regrets the impact that the documentary had on her

family. The constant filming and the controversy took a toll on their

entire family. " What I wish, " she said, " is that I could have had the

feeling that it was okay to choose the implant back then and not have

gone through all of that. We had so much influence from so many

directions and it was overwhelming. "

" The deaf community, " Nita continues, " was quite shocked to learn

that our family decided to pursue the cochlear implant after the film

was released. But there is much more acceptance now. " adds, " I

think the movie opened many people's eyes to Deaf Culture as well as

opening the deaf community to implants. What I regret is that it made

my family turn cold to each other and it took three years for us to

get back together as a family again. "

For and Mari, " Sound and Fury " taught them an important

lesson. " As parents, " says Mari, " the most important lesson of the

movie for us is that everyone has the right to make their own

decision, and that decision should be respected. The most important

thing to realize, " she continues, " is that even though it may appear

your child is 'normal' [hearing] they will never be. The implant is

not a cure for deafness. Your child will always be deaf. You will

always be the advocate for him/her. Getting an implant for your child

is the easy part. The hard work comes after, which involves speech

therapy, home speech, language lessons, getting your child mapped

accurately three to four times a year. But the pay off is well worth

it...We are seeing the benefits of 's hard work now... he is

flourishing beautifully. " (III) is now 7 years old and in first

grade. He attends a school near his home and is the only deaf child

in his class. " is an energetic, vibrant, extremely bright seven

year old boy who is doing very well, " says Mari. " He is able to carry

conversations with anyone. He has many friends and is able to hear on

the telephone as well. He is in first grade and is reading well above

his grade level. "

" He embraces his deafness as his identity as he accepts the fact that

he has big, brown doe eyes, " says Mari.

In October, 2003, (III) approached his parents and asked for an

implant in his other ear. He now has bilateral implants and enjoys

hearing out of both ears. " He tells us often that he is glad that he

is able to 'hear out of both of his ears', " says Mari. " does

have some difficulty in very noisy situations-like a birthday party

at a bowling alley. But he's an awesome lip reader and this skill

helps him understand what is going on. "

In many ways, the entire family has come full circle. Mari is

teaching (III) American Sign Language and sharing it at his

school. uses ASL to communicate with other deaf family members,

especially his deaf grandfather, with whom he is very close. He uses

ASL when at the pool or at night when he takes his implant off.

For many people, " Sound and Fury " was a controversial journey into

choices that parents face with a child with hearing loss. For the

Artinian family, the journey has brought them together again and the

furor has died down.

( Putz is the director of Illinois Families for Hands & Voices)