Actress Melissa George read through the script for Music Within, as she would any other project she was considering. But by the closing pages, she knew she had to make the film. She would play Christine, the love interest of activist Richard Pimentel, in a story that struck her as hauntingly familiar. Similar to Pimentel, her father had been injured in Vietnam, sustained a condition marked by constant ringing in the ears along with hearing loss.
“It really affected his life,” George says of her father.
The uncanny connections didn’t end there: During the shoot for Music Within, due out this fall, the Australian actress learned that director Steve Sawalich’s stepfather is the founder of Starkey Laboratories, maker of “the smallest hearing aid ever,” George says. “We would like to help your dad out,” Sawalich told her. So her father flew to an affiliate in Western Australia, got fitted for the hearing aids and walked solidly into the world of sound for the first time in decades.
“Now I can’t hear your mother yelling at me,” her father joked.
George’s story is humorous with an undertow of emotion just like the film, which follows Pimentel as he becomes politicized after he and others with disabilities face repeated discrimination. While the smaller story is of his friendships with Christine and Art Honeyman, a college classmate with cerebral palsy, the larger tale is of the historic rise of the disability movement, which culminates in the 1992 Americans with Disabilities Act. Music Within won the Audience and Star Awards at AFI’s Film Festival in Dallas.
“The first time I saw the film, it was very traumatic,” Pimentel recalls. As background, he had supplied the producers with 90 pages of notes on his life, allowed them to videotape him during two days of in-person interviews, and gave them a copy of his 1980 book Tilting At Windmills, a guide to employing people with disabilities.
“It was important to be real candid, to show up warts and all,” Pimentel explained. A highly sought-after speaker, he’s fought for disability rights for upwards of 40 years. The difficulty for him in watching the film had less to do with how he was portrayed, than in seeing the depiction of his late mother, who was emotionally and mentally delicate, and of his father, who died in a sudden fall from a ladder when Pimentel was a boy.
After the initial shock of seeing the intimate details of his life projected onto the big screen, he saw the film a second time and evaluated it as a movie. “Then I was so thrilled,” he said. “Everybody did such a fabulous job. I was especially pleased with the integrity of the script.” He realized then that they were using his life experiences as a vehicle to tell the story of the disability movement.
Actor Ron Livingston took on the role of Pimentel, aware that his performance could not help but draw comparisons to the real man, who is something of a celebrity in his own realm.
The actor and activist first met in Minnesota, where Livingston flew to hear Pimentel at a speaking engagement. “It was kind of important to see him in action, since I play him speaking throughout the movie,” Livingston related. Watching from the audience, he found the public Pimentel to be “an engaging and friendly speaker who, on a dime, can turn very passionate.”
The two men spent private time together over lunch, where Livingston observed Pimentel’s mannerisms while asking a laundry list of questions. “It was a cross between a student newspaper interview and a therapy session,” jokes Livingston, who is a graduate of Yale’s School of Drama.
“I could tell he was studying me, my gestures, the way I say things,” Pimentel recalls.
If it was some kind of test, Livingston, perhaps best known for his roles in the comedy, Office Space, and HBO’s Sex and the City, scored with high marks. “Ron really took a lot of care to portray my character with truth, he didn’t just imitate me.”
Playing his free-spirited love interest Christine—a character also based on a real person—George came up with her own set of questions for Pimentel, to help her better understand the person whom she believes was “the woman who really made it all happen, who made him become a bigger man.” Theirs starts off a hippy-dippy relationship in which Chistine is willing to make sacrifices, while Pimentel refuses—a choice he later regrets.
George says the film was shot in Pimentel and Honeyman’s hometown Portland, OR, while the Vietnam scenes were set in the Philippines. The actress, who just wrapped a season of the new HBO show In Treatment with Gabriel Byrne, Diane Wiest and Blair Underwood, divides her time between homes in Los Angeles and Buenos Aires. She is a veteran of the long-running Aussie nighttime soap, Home and Away where, at only 16, she starred opposite Guy Pierce and Heath Ledger, and is a former championship skater.
For her, Music Within made her highly aware of challenges people with disabilities face, particularly on a physical level. She finds such accommodations as accessible entrances and restrooms widely available in the U.S., Australia and England, but largely non-existent in the rest of Europe. “Still to this day,” she says, “they don’t seem to care.”
Actor Michael Sheen, who drew impressive notices for his portrayal of Britain Prime Minister Tony Blair in The Queen, had to play someone who needed those accessible entrances and restrooms. In perhaps the most arduous performance in the film, he affected the mannerisms of a person with cerebral palsy and learned to maneuver a wheelchair in his role as Pimentel’s best friend. “When I started off, I wasn’t great at using it. I remember causing a bit of obstruction as far as some persons were concerned. While some people were helpful, others seemed to find me invisible.” The experience, he says, “made me realize how inaccessible certain buildings were.”
Many of the revelations the actors came to collectively while making the film, however, had more to do with things people don’t say in those awkward moments when people with disabilities and people without seek common ground.
“I always used to think that most of the challenges with people who had disabilities was the disability itself,” says Livingston. “What I started to figure out, doing this movie, was that most of the challenges stemmed from the fact that people without disabilities are scared of people who have them. Once you started teaching people not to be afraid of each other, most of the problems went away by themselves.”
The pivotal moment of the film occurs as Pimentel returns from Vietnam and finds that college admission clerks and employers are unwilling to consider a student or an employee with hearing loss. They seem unmoved by the fact that his injury occured as he served his country. For a time, he hides his disability by learning to read lips, but then begins to notice all the people around him who don’t have the option of hiding their disabilities, and who are, as a result, being denied their civil rights as Americans. It stirred Pimentel to become a voice for people who had no one to speak for them, no one to point out the wrongs and cry foul. It became his mission to bridge the gap between the two worlds by removing all barriers to access.
As a public figure, he always seemed to meet with success, but privately he had a history of wrestling with inner turmoil. “Because of the trauma of my youth,” he says, “I was very reserved. The first five years in school, I was diagnosed as retarded, and put in special education.” He hardly spoke at all. But one of his teachers sensed his potential as an orator and coaxed him into giving a speech. His first time out, he talked about having a job as a boy where he decapitated chickens for all the Chinese restaurants in Portland. He killed, in more ways than one: The speech was a hit.
“I guess I had not spoken for so many years,” he conjectures, “that I had a lot to say.” His teachers told him he was a natural. As a 7th grader, he debated high school kids. But when it came time for college and he didn’t have money to enroll, he ended up in the Army in Vietnam, where, following an explosion, he sustained severe hearing loss and a chronic clanging in his ears-called tinnitus—which continues to this day.
In the frustrating cycle of seeking work and slamming into obstacles, he began to band together with others who had disabilities to create an employment-placement service. He documented many of his observations and job-hunting strategies for people with disabilities in his book Tilting at Windmills. Though run by another entity these days, the speakers’ bureau and employment-training component that grew out of it, now known simply as Windmills, is still going strong some 27 years later.
Telling such an expansive story, says Livingston, was “biting off a lot.” He noted that the key to capturing someone’s whole life in two hours and making it meaningful and resonant requires “that it show what we can all learn from the experiences of this guy…and how it relates to the lives of anybody sitting in the audience.” He saw Pimentel as being rather extraordinary for how he answered the call of his times:
“It’s basically the story of a guy who was carried along on a wave of history, and seemed to have a knack for turning up at some interesting moments of it, in the same way that Forrest Gump seemed to do. For a lot of us, that wave of history leaves us undisturbed.”
Pimentel wanted a film about him to be historic as well, by making sure that it represented a world rarely depicted on screen, one in which there are more than 50 million Americans who have various disabilities. “Pretty much everyone you see in the movie with a disability30 to 40 people–actually has one, unless there’s a compelling reason for them not to,” Pimentel reveals.
Though he and Honeyman initially felt strongly that an actor with CP play the latter, actor Michael Sheen won the two old friends over.
“More actors with CP auditioned for the part than not,” says Pimentel, “and he played the part the best. When we saw Michael, my jaw dropped down to my chest because he reminded me so much of the real Art Honeyman. Then Art met Michael and they hit it off. I realized, we’re not hiring someone to play someone with CP, we’re looking for someone to play a real person.”
Sheen, who was shooting the film version of the Broadway play, Frost/Nixon at this writing, remembers that both Honeyman and Pimentel were on set the day that he and Livingston filmed one of the more memorable scenes. After pushing and pulling Honeyman up a complicated set of stairs in a wheelchair during the preADA years, they finally make it into a restaurant, only to be ordered to leave because the owner claims that Honeyman’s uncontrolled reflex movements, natural to a person with CP, will be too disturbing to his other customers. It’s a hurtful scene for the audience, and a difficult one to shoot when the man you’re playing is looking over your shoulder.
“It was very intimidating,” Sheen recalls. “When you get to know Art, you get to know how discriminating he is, and to know he was watching me frightened me, and yet spurred me and inspired me… It was great getting to meet him and other people with various forms of CP. I spent time at a Cerebral Palsy center in Los Angeles. I had to overcome my initial ignorance about it.”
Perhaps the greatest challenge was pulling the performance out of his body, Sheen says. “I had to get used to playing a man who is in a wheelchair. I had to get around in it and to create the external manifestations of a person with CP. I got a lot of tension in my body. I had to get a lot of massages.”
A number of those involved point to Art’s character as the emotional core of the film.
Sheen himself was attracted to the role because it was “so beautifully drawn,” while Pimentel says, “Art was the most impaired person in the movie, and he was the most normal.”
“We all have physical limitations,” Livingston notes. “They run on a continuum. There’s not an artificial break where people on this side are completely unbroken, and people on that side are broken.” George had a similar experience of realizing how just thin the line can be: “Anything can happen to any of us. So if there’s any heart in this world, we have to accommodate everybody.”
It is difficult to end a film about a person whose life is still being lived. As Pimentel moves forward, his continuing mission with partner Milt Wright and Associates is to extend the reach of the ADA, which has met with some setbacks since it was enacted by the first President Bush. Several Supreme Court decisions have knocked some of the wind out of it, so that it doesn’t have the power to fully protect the rights and access of the people for whom it was originally designed.
“If people think you can screw on your arm and you’re not disabled anymore, or take a pill and it makes you feel better” you may still be treated unfairly, says Pimentel. If employers were better educated on how to talk to a person with a disability during an interview, it might improve the likelihood that the candidate would be hired. “If I come to an interview and I have no arms and I want to drive your bus, trust me, you should talk to me,” he says with a laugh.
Pimentel is also eager to see people with disabilities become more united.
“Before the ADA, the disability community wasn’t a community, it was a lot of towns connected by a freeway: The blind people didn’t get along with the wheelchair people, the people in wheelchairs resented the mentally ill. But with the ADA, there was a moment in time that all the people came together around a common goal, and then they separated, never to come together again.” After it was passed, he says, “everyone threw down their swords on the battlefield and figured they could go home and be a farmer.”
He thinks the biggest loss in this area is what a unified disability community could offer young people, whom he believes need a sense of history to chart the path ahead. However, he also notes that he has witnessed growth as “young people with disabilities today dream big. When I was a kid that wasn’t the case.”
Pimentel was pleased to learn that actress Melissa George’s father also got help with his earring through Starkey Laboratories. Says the activist, “There have been advances in technology, and people who couldn’t get help 20 or 30 years ago, should go and be reexamined, because there may be help now.”
George’s father is keen on his new hearing aids, along with the way he can amuse his grand kids with the noise they make when he turns them on and off, or just the conversations he can join in with his children. And he hopes daughter, Melissa, will keep picking movies with well-connected directors attached.
“On your next movie,” he told her recently, “if the director has a family that makes speedboats, could you get me one, Love?”
Pamela K. Johnson
Music Within marks Steve Sawalich’s directoral debut as a feature filmmaker. He produced the project, along with partner Brett Donowho, who once served as an interpreter for the deaf. The two met four years ago in Dallas. Here, Sawalich talks about how he got the idea for the film, and stuck with it for the many years it took to bring it to fruition:
I met Richard eight years ago at a conference where he was doing a story about disability in the workplace. He took the audience on a roller coaster of emotions. One moment they were laughing hysterically, the next they were crying. Richard has always lived his life by finding the humor in every bad situation he was dealt–for every cry you get a laugh—which helped him get through it. He was so captivating that I could picture the story in my head. So I introduced myself to him and said, ‘I’d like to make your story into a film.’
He was very reserved and didn’t think it was a goodenough story. But I said, there’s a reason you talk on this subject, and it’s something people don’t know about. So we parted ways for a couple of years, but periodically I talked with him about making a film. Then we reconnected about four years ago. We sat down and started fleshing out a story with Brett. It was quite an undertaking. We went out to investors who came together because of the idea. It touched a lot of people. The budget was less than $5 million.
My background is in the hearing-aid community. I grew up in that arena, and met Richard through my stepfather, Bill Austin, who founded the hearing-aid company, Starkey Laboratories. It’s based in Minnesota with 36 factories worldwide. I’ve worked with our Starkey Hearing Foundation for the past 10 years. We’re mostly focused on giving the gift of hearing to people who’ve never heard a sound. One of our main innovations is to put a smaller hearing aid in the ear canal, which looks better and allows the ear to work as an amplifier as well. For some children, the first thing they hear is their mother saying she loves them. To see that smile come across the face is instant gratification. Hearing reconnects people throughout the world.
In the past eight years, I have gone on 40 missions in over 25 countries, fitting children with hearing aids in Vietnam, South Africa and the majority of the Latin American countries. Some of the families walk seven hours, take a bus for two days and then sleep the night before on the steps of the building where we’re doing the fittings. Each year we donate thousands of free hearing aids to people who need them.
We partner with schools for the deaf and government foundations—basically getting to people anyway we can, to make sure they get the proper care before and after. We don’t want the child to go home, have the hearing aid break a day later, and then they have no place to go. We make sure they get follow up once we’re gone. We put an infrastructure in place. A child’s ear continues to grow until they’re about 13 years old, so we make sure the mold stays current during the growing years. After they’re fitted, we find that most kids do better in school and in life.
Before Music Within, the only other film I made was a short when I was just out of college. Back then, I was still trying to learn the ropes of filmmaking. I went to Pepperdine University in Malibu, California. I had thought I wanted to be an actor. But I discovered that I was not in love with acting, and you have to love it. So I started toying around with directing, and found my true passion. Though they had an excellent TV production program, Pepperdine didn’t have a film program, so I got together with some film professors and started studying film on my own during my last year there.
In Music Within, Leslie Nielsen plays my stepfather. He did a good job. He’s been a good friend of the foundation for quite a few years. Though he’s known mostly for his role in comedies, he started out in drama and has a strong background in that. My stepfather’s role was more behind the scenes. He gave us an audiogram that showed Richard’s hearing loss by frequency, so we could use the mix board to give the film’s audience a sense of what Richard was actually hearing with the ringing in his ears. It was like a bucket over the head. The tinnitus we simulate in the film isn’t as loud as what Richard actually hears. One day in the editing room, we had it up as loud as Richard hears it, and it made me ill.
Though Richard’s hearing was muffled before my stepfather fitted him with the hearing aids, his friend, Art Honeyman, spoke with a low, gutteral timber that Richard could hear remarkably well. My main impetus in telling Richard’s story was to show how giving something such as a hearing aid to one person may help that person change the world.
At the American Tinnitus Association, people ask us ‘What is Tinnitus?’ all day long. And while it might seem like a simple question to tackle, our approach varies, depending on a number of factors, such as how long the caller or letter writer has had the condition, what the likely cause of it was, how their doctors talked to them about it, or even how much sleep they’ve had. (No one copes well who hasn’t slept well.) What is the same for all who ask is that they need a really good answer. Here is what we say Tinnitus is:
An estimated 50 million Americans experience it. The word tinnitus (pronounced ti-NIGHT-us or TIN-i-tus) is Latin in origin, and means “to tinkle or ring like a bell.” For most people, it’s just a brief tone (called transient tinnitus) heard in the quiet of night right before bed, or perhaps for an hour after going to a concert without earplugs. For 12 million of those 50 million, tinnitus is persistent and often troubling.
BETTER SOME DAYS THAN OTHERS Rough-and-tumble tinnitus can take a holiday now and then, to the relief and sometimes—believe it or not—to the dismay of those who have a good day once in a while. The latter tend to think of the reprieve as a “tease” and are upset that the quiet doesn’t stick around. It sometimes helps if they remember that there are those who’d do almost anything for an occasional day or single moment of quiet.
For some people, tinnitus is a steady, unchanging noise every waking minute. For others, it is a sound that comes and goes, or a tone that changes pitch throughout the day. Some have tinnitus that’s “on” for three days and “off” for one day. The majority of people who contact us have constant, unvarying tinnitus.
At least it seems loud. For more than 80 percent of the 1,422 patients at the Oregon Hearing Research Center, the tinnitus volume was 0-9 decibels above their hearing threshold. That’s very quiet. But if that so-called “quiet” is very high pitched, it might not be masked by lowerpitched sounds in the environment, which could make the tinnitus seem louder than it really is.
A SOUND NO ONE ELSE HEARS
In almost every case, tinnitus is a totally subjective noise—one that only the person who has it can hear. In rare cases, when the tinnitus is caused by an abnormality in a vein or artery and is in rhythm with the heartbeat, the sound may be audible through a stethoscope placed on the neck or directly in the ear canal.
In and of itself, tinnitus is not a disease. It is like pain— a signal that something has gone wrong somewhere.
Tinnitus can be very upsetting. In a way, that’s not surprising. Richard Salvi and Alan Lockwood’s brainimaging research in the late 1990s showed that in some subjects, tinnitus involves the limbic system—the brain’s emotional center. Our brains seem wired to interpret constant loud noise, chronic pain and vertigo, too, as something to be upset about. Since tinnitus is a symptom of something that has gone wrong and might need medical attention, such as an acoustic neuroma (a tumor on the auditory nerve), in those cases it is alerting the patient to a bigger problem. In most cases, however, the tinnitus trips that warning switch in error, and the person with tinnitus feels alarmed and anxious because of it.
This is the kind we hear about the most, which makes sense to us. People who aren’t terribly troubled by their tinnitus generally don’t call us for help. Constant, intrusive sound can disrupt sleep, family relationships and one’s ability to work and concentrate. When tinnitus is at this level, medical and audiological care are probably in order. It is also imperative that people with tinnitus find a way to get restful sleep. It’s an important key in gaining control of the condition.
OFTEN LOUDER AFTER WAKING UP
This is a very common experience, although researchers have not yet gotten to the root of it. We know that the brain is very active during sleep. We also know that the brain experiences electrical and chemical changes during sleep that it doesn’t experience while awake. If you experience the phenomenon of temporarily elevated tinnitus following sleep, you are in good (although perturbed) company.
“Go home and learn to live with it.” I cringe at these words. And we know they’re being said with baffling regularity. Our battle cry to health professionals is NEVER tell patients to go home and learn to live with it—unless you tell them how to live with it. We now offer an educational course for health professionals that we hope will turn that tide.
Men get it. Women get it. Even children get it. Education levels or income levels are not predictors. Excessive noise exposure is the most common cause, but it doesn’t matter if the noise is from a rock concert, farm machinery or artillery fire. Noise is noise; ears are ears. Those whose ears are susceptible to excessive noise are those most likely to be hurt by it.
Our association dedicates half a million dollars every year to tinnitus research. We’re able to do this for two reasons: 1) ATA members donate generously to our research program, and 2) brilliant and energetic scientists all over the world dedicate their professional lives to the study of tinnitus. The number of tinnitus scientists increases every year, and the quality of research projects climbs proportionately. We are thrilled about this.
Tinnitus is caused by many things: ear-damaging drugs, jaw misalignment, Meniere’s disease, head injury, a tumor on the auditory nerve. But the most common culprit is excessive noise exposure. Regardless of the cause, tinnitus can be relieved—sometimes on the spot— by sound therapy. Here’s why: A steady, low level, broadband sound, like that of rainfall, can reduce the contrast between the patient’s internal noise and the sometimes too-quiet external world. Sound therapies, commonly called masking and tinnitus-retraining therapy, can make it less noticeable and, for a lot of people, less troubling. Other treatments, including medications, biofeedback, relaxation techniques and cognitive behavioral therapy, are helpful too.
by Barbara Tabachnick Sanders
Barbara Tabachnick Sanders is the former director of education for the American Tinnitus Association, and the former editor of its Tinnitus Today publication.