During the workshop, two speakers with moderate to severe hearing loss described their experiences and their efforts to remain healthy and socially engaged. Although experiences with hearing loss are as diverse as the people who lose their hearing, these two presentations are summarized here, at the beginning of this report of the workshop, to introduce some of the issues that millions of people deal with every day.
Katherine Bouton Author of Shouting Won’t Help
Katherine Bouton, a former editor at the New York Times, has a hearing aid in her right ear and a cochlear implant on her left ear. “I wear them all day, every day. I wouldn’t have a life without them.”
Bouton first started losing her hearing when she was 30. Hearing loss is often thought of as a condition of aging, but about two-thirds of people with hearing loss begin to lose their hearing before the age of 60, she observed. If everyone could realize that hearing loss affects people of all ages, Bouton added, we could defeat the stigma of age, and people would be much more likely to wear hearing aids.
Bouton was in denial for many years. She denied that her hearing was bad or that she needed a hearing aid. More than 20 years elapsed after she was given a diagnosis of a fairly severe hearing loss before she obtained hearing aids. Even then, she was sure that her otolaryngologist (also known
as an ear, nose, and throat, or ENT, physician) would find the cause of her hearing loss and reverse the progression. But the cause remained undiagnosed, and she began researching hearing loss herself.
Meanwhile, her hearing continued to decline, “and so did my spirits,” she said. “I sank deeper and deeper into depression. In 2008, I lost the minimal remaining hearing in my left ear and most of the hearing in my right ear as well. I isolated myself increasingly at work and with friends. I avoided the cafeteria. I avoided meetings I should go to. I never went out for drinks afterwards with people…. The night of Obama’s first election, I watched the election returns alone at home on my couch,” she said, declining an invitation to watch with friends. Bouton admitted she was lonely and drank too much. “I fell asleep before I even knew that Obama had won.”
She added, “Always accompanying this depression was anger. There was anger at my hearing, anger at my colleagues, anger at my husband. I was short with my kids. I was estranged from my friends. I was angry with the hearing aid industry for not coming up with better products. I was angry at my audiologist for not being able to make me hear again. I was angry at science. I was angry at the world.”
The next year she obtained a cochlear implant, but her experience was not as positive as some. Negative stress and years of neglect made it hard for her to adjust to her implant. Shortly after the implant was activated, she left her job at the New York Times. “Despite the cochlear implant and the hearing aid, I really couldn’t do [the work I loved]. I wasn’t interested in doing the work that was offered as a substitute.”
She was unemployed, functionally deaf, and at rock bottom. “Anger actually helped, surprisingly enough. Anger was my original incentive for writing Shouting Won’t Help. I thought, ‘I will show them. I will show them what I have been through. I will show them all how badly they treated me and how unsympathetic they were.’ Fortunately, I moved on. That is not a good premise for a book.”
As she researched hearing loss and talked with more people with hearing loss, she gradually gained perspective. Eventually, she said, she reached “that elusive stage of acceptance. I was able to accept that hearing loss is part of who I am.”
People experience hearing loss in different ways, depending on the degree and the nature of the loss, the kind of correction they have, the kind of person they are, and the relative difficulty of the challenges in their daily hearing environments. For many, whatever the circumstances, hearing loss can be emotionally devastating. “We grieve the loss not only of our hearing but often of our way of life,” Bouton said. “Hearing loss affects how we work. It affects our enjoyment of music and movies and lectures, our relationships with family and friends.”
Bouton said her hearing loss is like being underwater. It is lonely but
peaceful. With her hearing aids and implant, sounds can be very loud, but she can also hear quiet sounds, such as birds chirping and streams gurgling. Most important, she can hear speech. “I can’t hear anything without my devices. They are essential to me.”
Bouton has come to terms with her hearing loss. “I own my hearing loss. My hearing loss doesn’t own me.” But she still has fits of what the blogger Gael Hannan calls “ear rage.”1 “Hearing loss is always there and always ready to trip you up,” she said.
The Hearing Aid Marketplace
Most consumers find the hearing aid marketplace incredibly frustrating, said Bouton. Many do not know what kind of hearing aid to get, where they should buy it, how well it will work, whether they can afford it, whether they need an audiologist, or how to find a good audiologist. “People are really confused about how even to take the first steps.”
Bouton said she has a good audiologist, recommended by her ENT physician, who guided her through the maze. Her first pair of hearing aids cost $6,000 in 2002, which was “a major bite out of my salary.” When she applied for insurance reimbursement, she received $500 for the two hearing aids. With three subsequent hearing aids, her insurance did not reimburse her at all. “It is no wonder to me that so many people turn to the big-box stores or the Internet for their hearing aid purchases,” she said. “We are a do-it-yourself country when it comes to consumerism. We shop where we can get the best bargain. We have to acknowledge that the Internet and the big-box stores are part of the hearing aid community.”
She recommended, however, that even low-cost hearing aids should be accompanied by the services of an audiologist. Her own audiologist spent many hours with her over the years. Her hearing would seem fine in the acoustically ideal environment of her audiologist’s office. But when she walked out onto the street, she would be assaulted by street noise, or speech would sound imprecise or fuzzy in the real world. “I would go back. She would fix it.”
Even with her audiologist’s help, she heard “too much of what I didn’t want to hear and not enough of what I did want to hear.” Sometimes her hearing aid itched or was too tight or not tight enough. Her audiologist would adjust it or send it back to the manufacturer. Every time she received a new hearing aid, her audiologist immediately scheduled follow-up appointments in the first 30-day period to readjust and reprogram her hearing aid. Still, her experiences with hearing aids were often frustrating. Bouton said that her hearing loss is complicated and that she often had to try differ-
ent brands before finding the one that worked best for her. Her audiologist “stuck with me cheerfully through these many, many years of hearing aids,” she said. “I am sure that I was far from her most cost-effective patient.”
Even exceptional audiologists can have lapses, said Bouton. Her audiologist did not explain that getting the most from a hearing aid takes practice and patience. She did not refer Bouton to a hearing loss support group. She did not tell Bouton about the rehabilitation programs available on the Internet. None of her hearing aids had a telecoil (also known as a T-coil) until 2 years ago when she specifically asked for one. (Telecoils and other technologies are discussed in Chapter 4.) “This isn’t unusual—40 percent of hearing aids today still do not have T-coils.”
Her audiologist did offer Bouton a variety of assistive listening devices, most of which she turned down as being “too much stuff.” Bouton finally bought an iCom Bluetooth for use with her telephone, which worked as long as she was in a quiet place. But the device caused a lag in communications when she used a cell phone. People would say that they could not hear her on the phone, “which I always found ironic since most of the time I can’t hear them. Generally, the phone continues to elude me, even with all of the devices I have.” She uses captioned phones when she can.
Two years ago, her audiologist provided her with a wireless FM system, which also can be synced to a cell phone. It is much more versatile than the iCom, she said. It can be used in personal conversations by holding it toward someone. It can be put on a podium to hear a lecture. “The first time I used it for any sustained period of time was on a trip I made to China. The guide wore it. It was fabulous. I heard everything he said in crowded marketplaces, in museums.” She was “thrilled with it,” but she still takes issue with the design. For example, the controls are on the device that goes with the speaker, which “doesn’t make any sense. It is me, the listener, who needs to be able to change those controls.” The receiver has a small volume control, but there is no way to change the program or the channel. “I am not about to walk up to the podium and start fooling around with it in the middle of somebody’s speech.” Furthermore, the multiple parts have a tendency to break down, and it is often hard to tell where the flaw is. “Finding out why it doesn’t work involves the busy audiologist again and, generally, weeks and weeks of waiting while one part after another is sent back to the manufacturer.” At this point, she knows the representatives at the companies that provide many of her technologies, and she works directly with them in finding solutions. Bouton said that the cochlear implant companies use this model, and it eliminates unnecessary steps.
Chargers are another problem. Bouton said she has enough chargers to fill an entire bedside table with equipment. “I do wonder why it is not possible to make something more like a universal charger,” she said. “Every charger is different.”
In the past few years she has had a chance to experience looping, in which a wire installed around the perimeter of a room sends a signal to the telecoils in hearing aids and cochlear implants. Looping enables her to hear better than any technology she has used before. It does not require extra equipment or another charger. She does not have to put anything around her neck or on her head. She noted that looping does not solve all problems, however. People who are profoundly deaf or do not wear a hearing aid with a telecoil or have an implant cannot benefit from it. Moreover, it cannot be used if people do not know that looping is available. Loop signs should be displayed both inside and outside venues, she said, and venues should advertise on the World Wide Web and in print that they are looped. Furthermore, relatively few venues have installed looping. Consumers do not know what it is and do not ask for it. Even Bouton’s audiologist did not know about looping and did not realize how useful it would be for her. “You want more gray hair in your audience? Get that looping system in there.”
Bouton also recommended certain actions. She said that standardized best-practice protocols are needed at every level. “The hearing aid marketplace truly is a chaotic mess. Consumers are overwhelmed by the choices and the cost.” These types of protocols would benefit the industry by reducing the rate of returns from consumers who have not been educated about their hearing loss, who have not been counseled about the need to come back in for reprogramming, or who have hearing aids that do not fit properly.
Audiologists, social workers, geriatricians, and nursing home employees need to understand the emotional toll that hearing loss takes, she said. They would then be better able to empathize with those who express anger and could encourage people to join support groups. They could even turn a negative into a positive by encouraging these individuals to become advocates for people with hearing loss.
Every audiologist should offer the same minimum checklist of services, said Bouton; for example, ideally, hearing aids need to be tested in a real-world environment. Bouton urged hearing aid companies to develop products that work even in noise, make assistive devices that are simple to use, and bring their prices in line with other consumer electronics. “I think we are all baffled by why this is not possible.”
The government needs to mandate coverage for hearing aids, said Bouton. The cost of not providing hearing aids is far higher in terms of unemployment and in cognitive decline than the cost of providing them.
“Hearing aids should be as common, as effective, as affordable, and as unremarkable as glasses,” Bouton concluded.
Richard Einhorn Composer of Voices of Light
Richard Einhorn is a recording engineer, a Grammy-winning former record producer, and a composer. His composition Voices of Light has been performed all over the world and was scheduled to be performed at the Kennedy Center in Washington, DC, a few weeks after the workshop. In the middle of his career, Einhorn experienced a sudden and severe hearing loss. “Sound has always been the primary way I orient myself to the world,” he said. “Now that I live with a very serious hearing loss, my quest to hear better has taken on a special urgency. Hearing better is absolutely essential for my mental and physical well-being. That is something I don’t know from studies, but I know simply as part of who I am.”
Einhorn said that he is essentially deaf in his right ear and has a 60 dB conductive loss from otosclerosis in his left ear. “It is a terrible thing to live with this condition, and it has affected every single part of my life, except, interestingly enough, composing, which is primarily an act of the imagination.” At the workshop, he played an example of what his hearing sounds like, and he said that the sound is so unbearable that he normally wears an earplug in his right ear.2
Einhorn described the technologies he uses to overcome his hearing loss, focusing both on how well the technologies work and on how easy and comfortable they are to use. He did not discuss looping technologies at the workshop, though he has been a prominent advocate for their installation.
The technology and ergonomics of hearing aids and personal sound amplifier products have become extremely good, he said, but “the truth is that many users, including myself, are less than satisfied with the performance of hearing aids in noisy situations.” The basic problem is the inadequate acoustic technique used in hearing aids. When the microphone is placed on or in the ears, it is too far away from the desired sound source to pick up a clean enough signal to extract speech from noise. Furthermore, the processing power inside a hearing aid is too limited to extract the signal.
The solution is to get the microphone closer to the signal, which can be done through assistive listening devices (ALDs). Common types include
2 The archived video webcast of Einhorn’s presentation, including the example he played, is available at http://www.iom.edu/Activities/PublicHealth/HearingLossAging/2014-JAN-13.aspx (accessed February 25, 2014).
portable microphones connected to amplifiers and wireless transmitters that can send the signal from a microphone to a receiver. “The idea then is that somebody can be holding this [microphone] and talking to you, or you can put it on a lectern.” ALDs also can send a signal to a telecoil in a hearing aid through a wire loop worn around the neck.
A common problem with these systems, said Einhorn, is that they are not robust enough. Telecoils tend to hum in electrically ungrounded settings or other environments that are not well engineered. “If you don’t know that your environment is hum-free, you cannot reliably depend upon using a neck loop.” To overcome this problem, hearing aid companies have created integrated systems that use different technologies to send signals to hearing aids. They tend to be expensive and proprietary, however, which makes it difficult or impossible to replace parts of the system, such as a microphone, with a preferred technology. Another problem with ALDs is that they require carrying around “a whole bunch of stuff,” said Einhorn. “They are essentially a Rube Goldberg contraption.”
A technology that could solve many of these problems, he continued, is the smartphone. They are very powerful computers with a microphone, an amplifier, and a sound output. “In fact, for some of them—for example, the iPhone—the sound quality is just below professional quality.” People already have them in their pockets, which means they do not have to carry around a lot of additional equipment. And they can be modified to assist with hearing loss. Einhorn has developed a system in which he has replaced the standard earbuds with a set of very good earphones and has installed a hearing aid application on his phone, resulting in a very high-quality hearing assistance device.
“It is like Galileo with the telescope,” he said. “People who have tried it, including people with severe hearing loss, have told me that this system works. There is starting to be peer review of this technology, and it basically bears out what I am telling you anecdotally.”
Further refinements could include directional microphones, wireless transmission to hearing aids, and further signal processing. “Is this a pipe dream? Well, I thought it was 3 years ago, when I first realized that it could be done,” he said. But tremendous progress has occurred since then, to the point that smartphones now could become the hub of a transparent assistive listening system.
“Hearing loss, of course, is a medical problem,” Einhorn concluded. “Hearing better—as well as your ears will allow—is essentially an acoustical and ergonomics problem. Present hearing technology is often not adequate because it doesn’t address the acoustic and ergonomics problems in a holistic way. A new approach to hearing assistance, based on smartphones, could dramatically improve the ability of millions of people to hear.”