Infectious sounds of laughter emerged from a retreat in the mountains of Malibu earlier this month, where many participants have never heard the animated tones of their own voices. While the majority might say a world without sound is too daunting to imagine, many of these campers will tell you that communication is a matter of perspective.
Approximately 220 people participated in the House Ear Institute’s (HEI) annual summer retreat for the hearing impaired June 1-3 at Camp Hess Kramers’ woodsy enclave beyond Neptune’s Net.
Common to most camps, the children engaged in a barrage of activities including sports, art, dance, interactive storytelling and what one camper called, “Yummy barbeque.” Unique to HEI’s retreat are the children’s parents and caretakers who are busy attending activities specifically designed for them–professionally monitored workshops, support groups, panels and discussions addressing the often emotional, if not challenging, family dynamic of raising a deaf child.
“It’s a very moving experience to see the different ranges of emotion the parents go through within 48 hours,” said Sheri Hultren, a counselor and coordinator for the last five years who says she is profoundly deaf. “You see the parents’ grief, joy, anxiety, and fear–but it’s important for them to see deaf adults and be able to ask us questions, if only to have a better idea of their child’s options and potential.”
Communication options include American Sign Language, oral communication often assisted by hearing aids, cued speech–a visual representation of English involving eight hand shapes as well as facial movements to supplement speech–reading and spoken language. Said one counselor, “Many use total communication, the simultaneous use of sign and oral language to communicate.” HEI matches hearing-impaired children with counselors using the same mode of communication for the duration of the retreat.
“There are many options out there, and we are examples of those options,” said Elizabeth Peters, 26, a retreat panelist in 2000, now a first-time counselor. Peters describes her hearing loss as “moderate to profound” and wears a hearing aid. “I can’t hear anything except for very loud sounds like trucks and trains. To understand speech I lip-read.”
Peters says she grew up at a “mainstreamed public neighborhood school with itinerant services. I didn’t use interpreters or note takers. I sat in front of the classroom and lip-read my teachers. I didn’t meet a deaf person until I was 14.”
As to any conflict between the “deaf culture” and the “hearing culture,” Peters acknowledges “there is controversy in the deaf community between the manualists (those who primarily use sign language to communicate) and the oralists (those who primarily use spoken language). The debate reportedly stems from the perception of people from both cultures who feel their mode of communication is somehow better. “Parents get caught up in arguing and forget that the child’s needs are what count,” said Peters.
Now in its 16th season, the annual retreat is the brainchild of Howard P. House, M.D., a world-renowned ear specialist and noted pioneer in the field of hearing science, who will be 93 this month. Still practicing, House founded the L.A.-based House Ear Institute in 1946, a “push the envelope” nonprofit research and education facility dedicated to “improve quality of life for people who have hearing loss, hearing disease or related disorders.”
HEI conceived and created the first FDA-approved cochlear implant system, a device many call “a miracle,” reported to have “helped more than 400 children internationally receive sounds and interpret speech.” Howard House is the father-in-law of Malibu Mayor Joan House, wife of psychologist Ken House. Howard’s son, John House, is now president of HEI.
“The camp is designed to involve the entire family in a support system,” said John House, adding that inspiration for the camp emerged “when we were just beginning to work with cochlear implants in children in 1982–yet parents had little peer support and no one to talk to. Here parents network and families keep in touch year after year.”
Christa Spieth, HEI communications specialist, said, “A lot of discussion is centered around school programs–examining options, regulations and paperwork. Finding the right school situation is a primary struggle for parents in dealing with a deaf or hard-of-hearing child.”
Parent Lori Moore knows the score of fighting schools. By her own admission, Moore is battle-worn from past and present efforts to maintain public school funding for special services like note takers and real-time captioning required for children like her son Andrew, 11, whom she says is thriving in a mainstream private school in the Valley, and previously for her other hearing-impaired son, Jason, 18.
After learning Andrew suffered from a profound hearing loss at the age of two-and-a-half, the Moores initially tried hearing aids for Andrew before choosing the cochlear implant, which requires major surgery.
Andrew received the implant at the age of 4 when hearing aids proved unsuccessful. Moore says her only regret is “we didn’t get the implant sooner.”
Andrew received a tremendous amount of speech therapy “because he had to learn sounds from the age of an infant. It took a long time to get him up and running–it was a long haul,” said Moore. For those parents who believe the implant leaves a child without choices, Moore said, “You can choose to remove the cochlear implant and the child will return to being deaf. We wanted to give Andrew the choice to hear.”
Pam Hakker, visiting the retreat from Riverside with her ex-husband, John, and son, Kyle, 9, who is profoundly deaf, has three other children who can hear. Pam, too, says that having a deaf child transforms many self-described “passive” mothers into powerful advocates for the rights of special-needs children.
“I wasn’t a joiner,” said Hakker. “I am a tall, big woman, not rich. I was scared to join, but when I had Kyle I learned I had to fight. I fought the school district for two years to get Kyle where I wanted him. People respect that.” Hakker says her son is now flourishing at the California School For The Deaf in Riverside.
As to Kyle’s report on camp, he communicated through sign language: “I loved camp because I have fun with sports and basketball and loved the dance performance. Some people speak, some sign, some do both, and I think that’s good.”
The film “Sound and Fury,” the provocative documentary nominated for an Oscar last March, was screened for parents followed by a panel discussion on the final day of camp.
Filmmaker Josh Aronson brings the cochlear implant debate front and center by exploring the extreme, opposing arguments of two Long Island brothers, one who is deaf, one not. The film documents the brothers’ wrenching divide when the hearing sibling opts to have his deaf child implanted with the cochlear device, while his deaf brother becomes enraged over his brother’s interference in deaf culture, and a child’s right to remain deaf.
Said Dilys Jones, HEI marketing and communications director, “What this film does is create the most amazing discussion within one family–allowing us to transition between the deaf culture’s perspective and the hearing culture’s perspective, [offering the viewer] some amazingly honest dialogue. I am showing it to these parents because many don’t understand the feelings of those who want to protect themselves against the hearing world.”
At the panel discussion following the film, counselor Christa Lopez, 24, a camp veteran, said she was profoundly deaf when she was born and chose to get the implant at the age of 15.
“I didn’t realize how hard I would have to work to get where I am now,” she said. “The implant is not an immediate fix, you have to go to speech therapy, and listen to your mother say, ‘You need to hear this.’ ” But, she added, “I didn’t realize what I was missing until I had the implant a couple of years.”
Lopez lamented on how difficult it was not to be involved socially in high school. “Now I can hear crickets, birds, running water, my friends and doctors. Now that I am an adult, I can share my experiences with the different families here. I function in both the hearing and deaf cultures. I have the best of both worlds.”