'Sound and Fury' Update: A Family Comes Together Again
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: Peter and Chris Artinian are brothers, sons of hearing parents. Peter and his wife, Nita, are both deaf. They have three deaf children, Heather, Timothy and C.J. Chris 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 Emily, Christopher and Peter (twins), and Joey and Nicholas (also twins). Their son Peter (named after Chris' brother and grandfather, so Peter is Peter III) is also deaf. "Sound and Fury" followed both families as they explored choices for their children.
In the film, Chris 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, Peter (III), will lose his deaf identity. Mari's parents also wonder how Peter will communicate with them if the implant is successful. Peter's parents strongly encouraged Peter and Nita to consider it for their daughter, Heather. At first, Peter 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 Peter's parents becoming more and more vocal about choosing an implant for Heather. Peter and Nita began to feel pressured into choosing a surgery that they were not ready for. Peter 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, Peter and Nita decided to move the family to Frederick , Maryland and enrolled all three in a school for deaf children. Peter remained in New York , and commuted to Maryland 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 Peter." Once the family moved to New York , Timothy often played with his cousin Peter. "I want an implant like Peter," Timothy said to Nita one day. Nita noticed that Timothy often struggled with lip reading and it was hard for Timothy 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 Timothy and Heather requesting an implant. Nita and Peter 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, Heather turned to her parents and signed, "Thank you for doing this for me."
A month later, both children had their implants activated. Heather 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. Heather 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 Heather. "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."
Heather is active in sports and enjoys basketball, soccer, lacrosse and swimming. When asked about accommodations for swimming, Heather 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. Heather uses the computer instead of the phone to contact her friends, preferring to have several instant messages going at once. Heather uses the phone with her grandmother, but has difficulty understanding people who do not have a familiar voice.
After watching Heather and Timothy become comfortable using their implants, Nita began to realize that she wanted to pursue the option as well. When she discussed it with Peter, 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 Timothy 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 Peter. "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." Peter 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 Chris 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 Peter's hard work now... he is flourishing beautifully." Peter (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. "Peter 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, Peter (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. "Peter 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 Peter (III) American Sign Language and sharing it at his school. Peter 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.
(Karen Putz is the director of Illinois Families for Hands & Voices)