Living with Hearing Loss: Workbook By Sam Trychin, Ph.D. Second Edition-Revised 1
INTRODUCTION The purpose of writing this book is to provide information to people who are hard of hearing and their family members about hearing loss and its effects on self-esteem, relationships, and everyday functioning. There are many millions of people in the United States who live with hearing loss and know virtually nothing about the condition or its effects on their lives. I have worn hearing aids since 1953 but it was not until 1984, when I began working with groups of people who are hard of hearing, that I really learned important things about my own hearing loss and its effects on my life and on other people. This book contains information about problems associated with hearing loss and strategies and tactics that have been found useful in preventing or reducing these problems. Most of this information has been gleaned first hand from the reported experiences of several thousand people who are hard of hearing and their significant others with whom I have had the privilege to work over the past seventeen years. So, there is tremendous validity in what is reported in these pages, as it should be, because it comes directly from the reports of people who are hard of hearing and their family members. I had the good fortune of training and experience as a psychologist providing services to people in a variety of settings before my immersion in the world of families experiencing hearing loss. I was able to make use of this prior training and experience by applying the parts of it that seemed relevant to hearing loss. But, there is little psychologizing in this book. Rather, it is a nuts-and-bolts approach to problems and solutions-nothing fancy. It offers suggestions to try that have been found useful by other people in similar circumstances. I strongly recommend that you actively participate by doing the exercises included in each section of the book. But, it is always up to you to decide what to take to heart and try and what to leave alone. I hope that this book will increase your awareness of the issues and concerns related to hearing loss frequently reported by people who live with it, help you to identify specific, personal issues and problems related to hearing loss that you experience in your daily life, and provide you with 2
suggestions, guidelines, and strategies for making any changes in communication behavior that you deem desirable. HEARING LOSS: BACKGROUND INFORMATION Often, hearing loss comes on gradually and progressively over an extended period of time. Individuals who have such an onset of hearing loss may not recognize its presence for a long time. Because they quickly habituate to each slight change in their hearing ability, each slight decrement seems normal to them. In this way they can develop a sizable hearing loss over time without realizing it. Knowing the signs and symptoms of hearing loss should enable people with gradual onset of hearing loss to recognize it sooner and take steps to accommodate it. Knowing the signs and symptoms of hearing loss can also help family members, friends, and co-workers to identify hearing loss and urge the hard of hearing individual to deal with it. Signs and Symptoms of Hearing Loss I have a vivid memory of a startling scene I witnessed as a teenager growing up in New York City. I was at my friend Henry s house, and his father was sitting on a footstool in front of the TV with his nose about four inches from the screen and with the sound volume at a very loud level. Henry s mother came into the room and exasperatedly shouted, Hank, for God s sake, when will you get a hearing aid? His response was, Ahh! I don t need any hearing aid. This example illustrates one sign indicating the presence of hearing loss that would be evident to most observers. Other signs and symptoms can be quite subtle, but are recognizable to the discerning eye. Any one alone may or may not point to hearing loss, but several occurring together are probably reliable indicators of hearing loss, especially when they occur with some frequency. The following is a list of these indicators (Trychin, S. 1991a). Frequently misunderstanding words (wash for watch) Frequently asking people to repeat Inappropriately responding to what is said 3
Failing to respond to what is said Difficulty understanding in groups Avoiding social situations Blaming people for not speaking clearly Being defensive about communication problems Turning up radio or TV much too loud Having a puzzled expression when listening Intently watching the speaker s mouth Turning the head to one side to hear better Talking too loudly or very softly Having a strained expression around the eyes Things To Do 1. HoH (the person who is hard of hearing): go back to the list and place an X next to any of the items on the checklist that apply to you. 2. SO (the significant other person, e.g., spouse, partner, family member, friend, co-worker): go back to the list and place a Y next to any items that you think apply to the person who is hard of hearing. 3. Compare the lists you have checked and discuss any differences in your responses. 4. Answer the following questions (answer question c based on the checklist): a. How many of your family and friends wear hearing aids? 4
b. How many of them talk openly about their hearing loss c. How many of them tell you what to do to accommodate it? d. How many of your friends and family should, but don t, wear hearing aids? Definitions Most people who are hard of hearing start out with normal hearing and gradually or suddenly lose some amount of it; they have hearing loss. A relatively few people are born with hearing loss or acquire it as an infant. These people do not have hearing loss in the strict sense of the term; they didn t have it to lose. I have found, however, that much of the information in this book also applies to many of those people who were born hard of hearing or lost their hearing as an infant. It is up to such individuals to decide if the information in this book is relevant to them. The same applies to people who are late-deafened. Some people in this group have also found the information contained in this book to be helpful Many people who are hard of hearing feel as though they are alone with the problems they experience related to not being able to hear well. Many say, I don t belong in the world of the culturally deaf because I don t know sign language. I don t hear well enough to belong to the hearing world. I don t seem to fit anywhere. Others are not sure to which category of hearing impairment they belong, Am I deaf or hard of hearing? We meet many people who refer to themselves as being deaf, when, in fact, they have a considerable amount of residual hearing. Not knowing to which group they belong, they find great difficulty in locating the services and supports they need to accommodate their hearing condition and get on with their lives. Different levels of hearing loss require quite different types of accommodations, so it is important to know to which group one belongs. The following are definitions that can be used to help determine to which category an individual most likely belongs (Trychin, S. 1993). Definition of Hard of Hearing Onset of hearing loss is from birth to late adulthood--usually the latter Have some degree of hearing loss varying from slight to profound 5
Have some amount of usable, residual hearing Can benefit from hearing aids and assistive listening devices Rely on spoken English (or Spanish, German, etc.) for communication Do not depend on sign language for communication Function in the hearing world in terms of family, friends, etc. It is important to recognize the distinction between hearing and understanding. Many people who have normal hearing think that if the person can hear someone talking they will also understand what is being said. Unfortunately, for most people who are hard of hearing this is not the case. They have hearing decrements in certain sound frequencies that make it difficult to hear specific speech sounds, especially the consonants f, s, sh, th, t, p, k, ch and h. They usually can hear the vowel sounds that carry the volume and duration of speech--a, e., i, o, and u. The result is that sometimes they hear the vowel sounds and know someone is talking, but are unable to hear the consonants, so they do not understand what is being said. This can be confusing to people who are talking to them and to hard of hearing people themselves if they don t have this information. Definition of Late-Deafened Onset is after the development of speech (usually in adulthood) Have a profound hearing loss Have little or no usable, residual hearing Derive little or no benefit from hearing aids or assistive listening devices Rely on visual representation of their native language for communication May learn and use some form of sign language 6
Function primarily in the hearing world but may acquire deaf friends In the case of many people who are late-deafened there is less confusion about their ability to understand what is being said. They do not understand spoken language at all, and need to have what is being said conveyed in visual form e.g., written on a pad or typed on a computer. Another category of hearing loss is deafness. Many culturally deaf people were born deaf and had deaf parents or went to a school for the deaf starting at an early age. Usually these people use American Sign Language as their primary means of communication and prefer to associate with other culturally deaf people. Another group is the orally deaf people. These also are often born deaf, but go to oral schools for the deaf or are educated in public schools either in special classes or mainstreamed. This book is not intended for either of these groups, but some individuals from both have found some of the information provided to be useful. There are some individuals who do not fit neatly into any one of the categories as defined here. Some hard of hearing people learn and use sign language; some deaf people attend SHHH meetings and use the Real-time Captioning (CART) services provided, reading the captioning rather than relying on interpreters. But, as a general rule, the distinctions made here hold true. Furthermore, there are support organizations and services appropriate for each level and type of hearing condition. Culturally deaf people have deaf clubs and other organizations for people who rely on American Sign Language or some variant of it. The Alexander Graham Bell Society (A.G. Bell) is devoted to the needs of orally deaf individuals, especially children. The Association of Late-Deafened Adults (ALDA) focuses on people who have become deafened after the development of speech and who may or may not be learning some form of sign language. Self Help for Hard of Hearing People, Inc. (SHHH) is an organization focused on the needs of people who are hard of hearing and their families. Again, there is overlap in terms of the individuals belonging to or identifying with these various organizations, i.e., some deaf people belong to SHHH and some people who are hard of hearing belong to ALDA. Many people belong to more than one of these organizations (see Resources, page 74). 7
Demographics When an individual who is hard of hearing feels alone and adrift in the hearing world, it can sometimes be a relief to know that there are many, many people who have the same or a very similar set of concerns and problems because they also have less than normal hearing. As a public health problem, hearing loss together with tinnitus is exceeded in its prevalence in the United States only by rheumatism and arthritis. The National Institute of Deafness and Other Communication Disorders (NIDCC) uses a figure of 28 million in estimating the number of people with hearing loss in the United States. About a half million people are deaf, and another one and a half million or less are late-deafened. The remaining 26 million people are hard of hearing, i.e., have some level of residual hearing, rely mainly on spoken language for communication, and live and function primarily in the hearing world. It is estimated that only about six million people own hearing aids. So, there are many, many people out there who are hard of hearing, but are not doing anything constructive about it. Some don t recognize that they have a hearing loss. Some recognize that they have hearing loss but don t relate problems in their lives to it. Some recognize they have a hearing loss and know it causes problems, but they don t know there are accommodations to prevent or reduce the problems. Some have other concerns in their lives with a higher priority, such as, serious health problems or financial difficulties. The major point of this is that we are not alone out there; considering all age groups, about one out of ten people have hearing loss, and over the age of 55 or so, about one out of four have it. When we know how to accommodate our own hearing loss, we can be enormously helpful to many others out there once we learn to recognize them. 8