Missed Connections

Chapter 1, also entitled "Missed Connections", discusses several aspects of the concept of connections. For example, one or two words not heard or understood can change the whole meaning of a communication. A hearing family member continually filling in the blanks for the loved one with a hearing loss might cause the person with the hearing loss to gradually stop making an effort to connect with others. Ms. Stenross explains some of the fundamentals of hearing and sounds in this opening chapter. I learned, for example, that decibels are logarithmic measurements. Her explanations of things, like the audiogram, consonants and sounds was very down-to-earth and easy for a lay person to understand. When the people she interviews talk about missing jokes (and why), I felt so gratified that someone understands the feelings of being left out when that happens. [p. 17]

Chapter 2, "Belonging and Acceptance" also struck a nerve. How many times in class do I refrain from making a comment because I'm not sure whether someone else said the same thing? Is the person speaking really through speaking, or are they just pausing between thoughts? Ms. Stenross discusses the rudiments of selecting a meeting room, how to get a seat in a restaurant that doesn't keep you from enjoying the company of your friends. Using the comments of her interviewees, she explains the importance of mingling with others who have hearing loss for a sense of belonging. This was striking to me since I learned about Deaf culture when I took American Sign Language (ASL) at South Puget Sound Community College. It struck me at the time that there seems to be no similar culture for the hard of hearing.

Ms. Stenross wrote about the organization, Self Help for the Hard of Hearing (SHHH – now the Hearing Loss Association of America ), and its conventions. The people she interviews explain the value they get from collaborating with others who have the same difficulties. I know this from personal experience since I've now attended two conventions offered by SHHH / HLAA. It's hard to describe how gratifying it is to realize you're not alone, you're not the only person facing these challenges of communication, and you're not some kind of freak. There's also considerable satisfaction in activities where people make concerted efforts to ensure that everybody can understand what's being communicated. Along with that comes the feeling that here, at last, is a place where you're unconditionally accepted and okay.

Chapter 3, "Hearing Aids and Lipreading" covers some very important points. One is, when shopping for hearing aids, consult with what I would call a broker – someone who doesn't represent one single hearing aid manufacturer. Ms. Stenross adds comments from one person who doesn't advise people how to select a hearing aid. Why? Because each person's hearing loss is different. Their ability to tolerate amplification may be different (see below). The situations where they need or want to hear better may differ also. Therefore, what works well for one person may not work as well for someone else.

I've learned myself that some people don't do as well with in-the-ear hearing aids as they do with behind-the-ear hearing aids, due to the specific nature of their hearing loss. Unfortunately, our culture seems to value beauty over functionality, so I suspect many people opt for the more "attractive" in-the-ear models and cheat themselves of the best available technology. I learned about the individuality of people's "tolerance for amplification" [p. 27], and resonated with this because I find I tire quickly when I must turn my hearing aids' volume up in order to understand conversation. I have yet to read or hear about any tests which might tell me if I have a low tolerance for amplification, and I think this merits further research.

Although this book, published in 1999, is somewhat dated with regard to the technology available at the time, Ms. Stenross does a good job of helping us understand hearing aid concepts like "analog" (vs. digital), directional and omnidirectional microphones, and "gain" (which I still don't really understand). Some of the complaints of the people at that time, like the inability of their hearing aids to amplify certain sounds and not others is being addressed by current technology.

Ms. Stenross briefly addresses a factor which was explained to me when I first realized I needed hearing aids. Hearing people's brains have learned to filter out certain obnoxious sounds. Since people with hearing loss don't hear those sounds, when they get their hearing aids, which amplify "everything", it causes distress. The white noise, sounds of air conditioners and fans, for example, get amplified along with everything else. And their (or our) brains haven't learned to filter those sounds out. Through her interviews she also explains an important piece of information – that hearing aids are just that – aids. They don't necessarily make your hearing perfect again. My first audiologist was careful to explain that to me, and even suggested that I tell people about that so they don't assume that I must have perfect hearing since I wear hearing aids.

Another subtle, but important, point Ms. Stenross discusses is something which I vaguely remember being cautioned about when I had my first tests which showed I needed hearing aids. If you put off buying aids for a long time, over that period you "lose the capacity to understand speech". [pp. 31-32] It has to do with concentration also. That this fact seems to be so little known is frightening to me. How many people put off getting hearing aids until they just can't get along without them, and how much capacity to understand speech have they lost during the delay?

I really appreciated the part about lipreading, more accurately speech reading. When I attempted to learn ASL, I became aware of how intently I focused on a person's face (particulary their lips) when they were talking. I realized it was interfering with my ability to learn ASL, where you must focus on the whole torso (and sometimes more). Ms. Stenross discusses some of the drawbacks to speechreading. For example, the facial movements to say "illegal" and "legal" look the same. Long facial hair, poor lighting, bad eyesight, and other factors impede the ability to read speech. And again, it requires intense concentration. It's tricky because as you're concentrating on interpreting one word, the speaker may be going on with additional thoughts, leaving you in a quandary. I found the discussion about whether speechreading could be learned very interesting because I have wondered if I would be helped by that kind of instruction.

Chapter 4, "Assistive Listening Devices": audio induction loop, telecoil, teletypewriters, closed captioning, alert systems, interpreters, FM systems, infrared systems, computer-assisted note taking, neck loops, FM boot (on your hearing aid), wireless microphones. – different ALDs work well for different hearing losses. Infrared and FM systems work best for people with mild to moderate hearing loss. I'd never heard of silhouette adapters or direct-audio-input features. I didn't understand that hearing aids only help in a six-foot range (approximately). It's important to note that many ALDs require that hearing aids be equipped with T-coils which may only be available in behind-the-ear hearing aids.

Chapter 5, "In Public" starts to cover the psychology of hearing loss. A man who had suffered a sudden hearing loss sat in the doctor's office for hours, never approaching the receptionist to ask if his name had been called, which it had. Ms. Stenross wanted to understand why. First is the stigma and sometimes shame of hearing loss. The exhaustion due to the energy it takes to be assertive, and the "loss of voice" which occurs when someone with a hearing loss succumbs to the feelings of hopelessness and isolation. One speaker talks about the extra energy it takes to attend public functions: be aware of the environment, get there early to assess listening equipment, fans, air conditioners. Your hearing is better when you're rested, and worse if your hearing aid batteries are weak. One speaker says it's easier to say she's Deaf, rather than explain the nature and extent of her hearing loss. "To make a go of being out in public, hard-of-hearing people can't merely make an equal effort; it often must be greater." [p. 59] "Voice" (or speaking out) must be exercised.

Hearing people expect a meeting to be give and take ... spontaneous. "When a hard-of-hearing person is in a meeting, the meeting has to change." [p. 60] Participation is a key word here. "Listening is one thing – not many hard-of-hearing people participate." "Hard-of-hearing people move about freely in public places. Yet they do so within a shroud of garbled words that has the potential to disconnect them from everyone present." While Ms. Stenross hopes the Americans with Disabilities Act of 1990, and the assistive listening options opening up in the future, will make participation easier, but she says "this will happen only if people with hearing loss tell others what they need and ask for help. In this educational mission, people who speak up can make all the difference." [p. 61] This is so striking to me at the moment because I recently attended a meeting of the Hearing Loss Association of Tacoma meeting where the moderator told several stories about how one person, acting as the squeaky wheel, caused changes to be made which will make hearing accommodation services better for all of us.

Chapter 6, "Dos and Don'ts" – Dr. Samuel Trychin, a retired professor from Gallaudet University, explains that he thinks the depression that springs from hearing loss doesn't stem so much from the loss of hearing as it does from the problems in communicating, the lack of connection with other people. People can do things and use technology to, perhaps, regain or maintain hearing, but behavior change is more difficult. [p. 64] In a section of tips for coping with hearing loss, there's a discussion about why people don't seem to be able to alter their speech patterns to accommodate those with hearing loss. Speech is an unconscious activity, and it takes conscious intervention to alter speech patterns. It's important that people with hearing loss don't interpret the necessity of reminding hearing people to speak slower or louder as lack of caring or sensitivity. It's just plan difficult to alter an unconscious process. People need to be reminded "lovingly" [p. 66], and it's an education process that will never end. (Another fatiguing thought.) Dr. Trychin explains that constant reminders might tend to make people shy away from you, so he recommends a bit of an explanation, followed by the suggestion that the hard-of-hearing person agree on a signal to the hearing person: tapping your ear, for example. Start your requests for accommodation with "Because of my hearing loss ...". Then it becomes my problem, not the hearing person's problem, so they don't feel put on the spot. "Unlike some other disabilities, hearing loss provides no ready clues about its nature, extent, or accommodation." [p. 67]

The hazards of bluffing are explained. I was surprised to learn the relationship between bluffing and self esteem. "It's a terrible, terrible thing to do to yourself, because it kills your self-esteem. ... because bluffing by definition means to pretend you're understanding when you don't, and you know you're doing it and it's a cop-out. The long-term effect is deadening." [p.68] The side effect is loss of relationship with the speaker when s/he realizes you haven't really been understanding what's being said. Dr. Trychin explains his concern that bluffing can become habitual. Ms. Stenross offers, further, that bluffing, "gives the false impression of having heard ...[and] makes hearing loss into something negative to be hidden or overcome. And it pushes the pretender further out onto the margins of the hearing world." [p.69]

A section of this chapter is devoted to developing realistic expectations. The scenario presented is one all too familiar to me. You're in a restaurant with friends and you can't understand the conversation, and go home frustrated and exhausted by circumstances. What do you do next time? Is it okay to explain to people you'd just plain rather not? Or offer the alternative of meeting in your home instead, where you can control the noise and environment? One person interviewed felt it was a sign of emotional health when you stop putting yourself in a no-win situation. [p. 71] Another speaker felt it's important to stop expecting yourself to hear and understand everything – something I need to do for myself. An aside of my own, I sometimes find that I haven't eaten at the same pace as the other diners because I have to focus so hard on people's faces as they speak. If I look down at my plate to eat, I miss large chunks of the conversation, making it more difficult to participate. One night there were four of us a restaurant. I virtually was silent the whole time -- no one even commented. They were having such a good time talking together, I was hurt to think they didn't even notice I wasn't included in the conversation. Dr. Trychin said in some situations you might have to be content with soaking up the good vibrations, a feeling I also share, although it's difficult because I want to hear "everything". Ms. Stenross closes the chapter with "... hard-of-hearing people don't have to stay at the margins of the hearing world. ... By telling others when and why they haven't heard – and the conditions under which they can hear better – hard-of-hearing people can reconnect to others and rejoin the group." [p. 73]

Chapter 7, "The Environment" There are so many things in our environment we might not hear – is it raining? is water running in a sink? Did someone just come into the room? (I've had to ask my partner to ring the doorbell before he comes into the house so I don't jump in shock when he shows up at my home office door.) Ms. Stenross here discusses some ALDs not covered in the earlier chapter. For example, there are sound alerts so a Deaf or hard-of-hearing parent can hear if their infant is crying. Some ALD alerts operate with strobe or flashing lights or vibrations. At the time of publication, there was even an alert to let a driver know a siren was going off somewhere. The possibly amusing example is discussed of noises made by the hard-of-hearing person, like slurping a drink or a hearing aid which is squealing because of a low battery. It sometimes amazes me that my hearing aids can make a noise which a hearing person hears from another room in the house, and I can't hear it when the noise is being generated right in my ear!! I also don't hear static on the radio or television, and it saddens me that I can't enjoy the sound of a relaxing waterfall.

Chapter 8, "Telephones and Television" As with other sections of this wonderful book, I'm delighted I'm not the only person who avoids the telephone like the plague. I have an amplified telephone, but I don't have the ability to read lips or speech read. As one of the speakers comments, it's embarrassing when you ask someone to spell their name and it's "M A R Y". The amplified telephones and handsets with volume control are other ALDs not mentioned earlier. I use both. This chapter also mentions the T-switch on hearing aids and how to use it with telephones, and that it takes practice and not all telephones are compatible. But as with all the devices discussed, one size doesn't fit all. What works for some might not work for others. There is also a discussion about teletypewriters (TTYs), text telephones, telecommunications devices for the deaf (TDDs) and relay services. The relay services evidently have been available since the 1980s. [another topic I want to research] Ms. Stenross explains that "as a courtesy, most phone companies discount long-distance calls for hard-of-hearing or deaf people with TTYs". [p. 86] Voice carry over (VCO) is also discussed.

Closed captioning on televisions helps people with hearing loss, although it has its drawbacks because you wind up looking at the words and missing the action or people's expressions.

Chapter 9, "Music to My Ears" I was surprised to learn there is music especially for hard-of-hearing people. Music is a sensitive topic for me because it's been so important in so much of my life. I started taking piano lessons before I started school. I've sung in choirs, harmonized to Barber Shop music, played in bands and orchestras. Suddenly, before I got my hearing aids, I stopped singing. Without realizing it, when I stopped being able to hear if I was harmonizing (or worse, when I realized I was off key), I stopped singing. When I got my hearing aids, I started singing again. Many of the speakers in this chapter relate similar stories. Tinnitus is also discussed in this chapter, an affliction I experience in varying degrees. Surprisingly, "tinnitus affects one in five Americans" and although it's experienced by many hearing people, "it is more common among people with hearing loss".. [p. 92] I was surprised to read about the wide range of causes of tinnitus, and that it can be in the outer, middle or inner ear, and there's also a variety of sounds which are "heard". For some people, their hearing aids mask the sounds of tinnitus.

Chapter 10, "At Home" Back into sensitive areas, the chapter starts out by discussing the tensions that evolve between hearing and hearing-loss members of a household. The necessity of repeating things, raising your voice (which may be construed as anger) cause tension. Another sensitive subject: alleged "selective hearing". I'm aware of this because my mother-in-law expressed the belief that I just hear her when I want to. It was gratifying to read the variety of instances where it can seem like you're hearing selectively: sometimes you hear better than other times, certain words may be easier to hear / understand than others. Dr. Trychin says there are forty reasons why people hear better some times than they do at other times. Another difficulty is hearing the first words someone says. That's why it's so important for the speaker to make eye contact before beginning to speak. Ms. Stenross really touched me when she explained, "First words frame conversations. New messages contain information that repetition doesn't. When the speaker's new words go unnoticed, everyone feels a sudden disconnection from the heart." [p.98] This chapter also includes a discussion about why you hear some people's voices better than others, male and female alike. I know I can understand some people when I don't have my hearing aids in place; others I have difficulty understanding with my hearing aids AND my ALD! Another new tidbit for me was the fact that moving away two feet makes about eight feet of difference in the volume (similar to decibel differences being logarithmic). Some of the tips for better in-home communication include "get close" (don't talk from another room), and "mark transitions" (give verbal cues that you're changing the subject, asking a question, concluding a comment). "Communication involves more than talking and listening. It also involves a conscious effort to bridge the distance between us." [p. 105]

Chapter 11, "Across the Generations" I seemed to relate to this chapter the least of all, which I find interesting. In my early childhood my grandfather was my father, and I don't remember a time when grandpa didn't wear a hearing aid. But I don't remember the negative things Ms. Stenross writes about, latent anger for compensation, etc. I do remember occasional accusations about "selective hearing", however. And now, my mother has hearing aids and lives in another state. She's not a computer / Internet person and doesn't like to write, allegedly because she's uncomfortable with her handwriting. And neither of us enjoys telephone conversations. So we rarely communicate, except for the occasional letters I type on my computer.

"Postscript" Ms. Stenross begins by relating the story of the "diagnosis" of her hearing loss, and the questions. Did she live in a loud neighborhood when she was growing up? Had she been exposed to loud noises? Been in a band? When she told the receptionist that the doctor had referred her to an audiology clinic, the receptionist replied "You're too young to wear hearing aids." [p. 119] My grandfather worked in a rock quarry until he retired, working around dynamite or whatever they used to split large boulders into transportable rocks. I'll bet many of the early years were without hearing protection. I was in the band for four years, in the percussion section, and also in the percussion section of the orchestra for many productions. I also worked in a typesetting environment where, after two and one-half years, I had the college's speech department conduct a test. When both my typesetting machines were operating simultaneously (which they were two days a week for eight hours while I worked on typesetting the college newspaper), the noise was at 95 decibels. Yet my mother, who also was in her 40s when she first got her hearing aids, was never exposed to loud noises except when she was in band in high school. Although they were very old, I have a photo of my grandparents parents who both wore hearing aids. My maternal great grandfather also wore hearing aids. Is my hearing loss genetic? noise related? (Does it matter?) "The etiology is unknown." [p. 121]

The book also contains References, a Selected list of Resources and an Index.

Book: The Feel of Silence by Bonnie Poitras Tucker

Organizations: association of late deafened adults, better hearing institute