Perspectives on Deafened Adults

Perspectives on Deafened Adults Michel David, M.S.W., and Sandra E. Trehub, Ph.D. A sample of deafened adults in Ontario, Canada provided information about the general course of their adjustment to acquired hearing loss. Their use of counseling services was limited, and those who did use such services expressed dismay about the ignorance surrounding acquired deafness, particularly the assumption that the problems of deafened adults are identical to those of congenitally deaf adults. Four illustrative cases are presented. houghts of deafness usually conjure up images of the prelingually deaf who have profound hearing losses from birth or the first few years of life. These individuals are conspicuous in their use of sign language or for the unusual quality of their speaking voices. A second group of deaf persons has managed to escape public attention, despite its considerable numbers. This group consists of individuals who acquired their profound hearing losses in adolescence and adulthood. They have been referred to as deafened (Ramsdell, 1947/1978; Luey, 1980), adventitiously <¿£a/(Benderly, 1980), postvocationally deaf (Schein & DeIk, 1974), sudden severely deafened (Levine, 1981), and late deafened (Hunter, 1978). In Canada, it is estimated that there are approximately 131,000 deafened adults (Canadian Coordinating Council on Deafness, 1980) out of a total population of 25 million. The deafened face problems that differ in some, but not all, respects from those of the congenitally or prelingually deaf. Prelingual deafness entails an extreme sensory deficit from early life and, therefore, has serious consequences for the acquisition of language and for the incidental learning of mainstream cultural norms (Meadow, 1980; Levine, 1981). Despite recent educational and technological advances, speech, language , and reading difficulties are likely to persist through The research was supported by grants from Health and Welfare Canada, the Natural Sciences and Engineering Research Council of Canada. David, who was deafened in adolescence, is a mental health counselor for the Canadian Hearing Society in Ottaiva and conducts a support group for deafened adults. Dr. Trehub is a professor of psychology at The University of Toronto. Requests for reprints should be sent to Dr. Sandra E. Crehub, Center for Research in Human Development, University of Toronto, Erindale Campus, Mississauga, Ontario, Canada L5L 1C6. adolescence and beyond (Conrad, 1979; Quigley & Paul, 1984) and, as a result, to limit occupational prospects (Schein & DeIk, 1974). Substantial early deficits in communication and language skills also limit familial interaction, at least in the early years. Inadequate communication ability, in turn, promotes aggression (Altshuler, 1971) and impulsivity (Harris, 1978). The longrun outcome may well be an adult with imperfect information regarding the social rules of the majority hearing culture. Despite these considerable difficulties, however, prelingual deafness is perceived to be less emotionally traumatic than acquired deafness because the prelingually deaf never experience the actual loss of their hearing (Levine, 1981). The deafened , in contrast, must cope with the permanent deprivation of a primary faculty on which they depend (Luey, 1980)—not only do they lose an auditory environment which enhances the affective quality of life (Ramsdell, 1947/1978) but they also lose the facility to interact freely with friends and relatives (Oyer & Oyer, 1985) and their job status (Thomas, Lamont, & Harris, 1982). The grief, loneliness, anger and anxiety have been described by deafened persons themselves (e.g., Muhooney, 1978; Elliott, 1980; Ashley, 1985). Luey (1980) notes that, in many respects, the adjustment of deafened individuals parallels the adjustment of hearing individuals to other catastrophic events (Kubler-Ross, 1969). The process of adaptation is impeded by the deafened individual's lack of understanding of deafness and by the paucity of rehabilitation services geared specifically to this population. As a result, many are left to face their depression or social isolation on their own (Benderly, 1980; Thomas & Gilhome-Herbst, 1980). Acceptance of the finality of acquired hearing loss occurs more readily when the loss is sudden rather than progressive 200 AAD/July 1989 Perspectives on Deafened Adults (Glass, 1985). For example, the suddenly deafened make more rapid decisions about the prospective mode of communication than do the progressively deafened (Mulrooney, 1978; Benderly , 1980). The extended period of denial in the progressively deafened delays the acquisition of new skills (Levine, 1981). Inability to share feelings with others prevents the dissipation of stressful feelings and promotes neurotic adjustment to the situation (Zekel, 1950). Thus, progressively deafened persons cling to and become increasingly enraged about the residual hearing that keeps diminishing, rather than facing the current hearing loss or the prospect of continuing loss (Pintner, Eisenson , & Stanton, 1941). Other factors that can intensify the problems of deafened persons are symptoms related to the disease process underlying the hearing loss. One of these is tinnitus, which refers to periodic noises, generally high-pitched, that are of pathogenic origin and have no external referent. Some progressively deafened persons suffer from bouts of vertigo and nausea. Others experience extreme insensitivity to quiet or moderately intense sounds coupled with hypersensitivity to intense sounds. This may generate discomfort in the use of hearing aids and create the mistaken impression that the victim is uncooperative. Despite differences in the emotional and social adjustment patterns of the suddenly and progressively deafened, they face many common difficulties, although perhaps on a different schedule. From the perspective of the general public or the uninformed professional, it might seem that the appropriate reference group for deafened adults is the deaf community, with its predominant composition of prelingually deaf persons . This view ignores the often superior speech and language skills of the deafened relative to the prelingually deaf, the likelihood of considerably greater educational attainment for deafened individuals, the different career aspirations, and the multitude of cultural differences separating the two. Moreover, the deafened, as long-term members of the mainstream culture , are likely to share the hearing world's stereotypes of prelingually deaf adults (Jacobs, 1974; Higgins, 1980; Orlans, 1985). It should be clear from the foregoing overview that the deafened face many problems shared by prelingually deaf persons but others that are unique to their gradual or abrupt change in hearing status in adolescence or adulthood. It also appears that few professionals have the requisite knowledge and expertise to guide such individuals through the emotionally traumatic experience of losing their hearing and beyond . If services for this population are to be improved, it would seem reasonable to consult the deafened about their use of current services, their problems, and their views regarding appropriate directions for expansion or alteration of these services . The purpose of the present investigation was to provide preliminary perspectives on these issues from deafened persons . Method Flyers requesting deafened individuals to participate in the current study were sent to audiology and speech pathology departments of general hospitals, as well as relevant social service agencies, clubs and postsecondary educational institutions . Recipients were requested to direct the flyers to persons who met the following criteria: (1) hearing loss of 80 dB or greater in the better ear (averaged over thresholds at 500,1,000 and 2,000 Hz); (2) onset of the loss at 12 years of age or older; (3) passage of at least two years since the diagnosis; and (4) residence in Ontario for the immediately preceding five years. The selection of 12 years as the rninimum age followed Hunter (1978), who claimed that by this age "one can expect the individuals to have conscious memories of the experience they went through, and some control over the choices they made about their situations (p. 3)." The selection of degree of hearing loss was somewhat arbitrary and also followed Hunter (1978). Contemporary conventions vary about the precise levels that characterize profound and lesser losses (severe, moderate, mild, in order of decreasing severity) but most commonly, profound hearing loss applies to a loss of approximately 90 decibels (dB) or greater in the better ear. In practice, however, few deaf individuals have precise information about the magnitude of their hearing loss, favoring instead global descriptors of the degree of loss (e.g., profound, severe) or a more general distinction between deaf and hard-of-hearing. The passage of two years was designed to exclude those experiencing acute distress in the immediate aftermath of the diagnosis in favor of others who could provide perspectives on the overall course of adjustment. Finally, our sample was limited to residents of Ontario, the most populous province in Canada and the one with the most extensive network of social services. Volunteers were interviewed by a deafened individual (the first author) if they lived within a 60-mile radius of Toronto; otherwise, questionnaires were mailed to them. Results and Discussion There were 25 respondents who met the criteria for degree of hearing loss, age of loss, time since loss, and residence in Ontario. Of these, 17 were male and 8 female, with a mean age of 44.9 years. The average age at onset of hearing loss was 24.9 years. The loss was sudden for 15 individuals and progressive for 10. Of the 25 participants, five were single, 18 married, and two separated. Only six respondents had received specialized educational services for the hearing impaired. Daily communication practices involved oral-based methods for 19 persons and bimodal methods for six. Approximately 20 percent of the time, these deafened individuals communicated or received communication in writing; some reportedly supplemented their oral communication with signs. It is interesting to note that those who attended a school program for the deaf signed on a daily basis. In contrast, only one of those who took community-based sign language classes (N=12) used sign daily. It would seem, then, that formal sign language classes removed from a general academic or social context have limited impact on communication practices. The majority of respondents participated in various rehabilitation programs, speechreading and sign language classes being the most popular, with 17 and 15 participants, respectively . Training in speechreading is designed to facilitate communication with speaking persons, but speechreading is a very difficult process because "speech is not very visible" (Conrad, 1979, p. 200). Although some deterioration in speech quality is associated with substantial hearing loss (Cowie & DouglasCowie , 1983), only four individuals participated in speech theraapy and three in speech conservation programs. For 16 deatAAD /July 1989 201 Perspectives on Deafened Adults ened persons, such rehabilitation programs were available within their local community; for four individuals, travel outside their community was required. One factor the might account for resistance to sign language is the belief that signing impedes oral communication and contributes negatively to general adjustment, a view expressed by six of the 25 respondents. What is more likely is that deafened persons are simply reluctant to part with a familiar language in which they are highly competent (oral language) in favor of one with which they are relatively unfamiliar (sign language). Moreover, the prospective communication partners of most deafened persons are hearing persons; thus the acquisition of sign would not facilitate communication with longstanding friends or relatives. Finally, the possibility of continuing in their chosen occupation is likely to depend upon some degree of receptive competence in spoken communication. When queried about their preferred social partners, the majority (N = 15) designated hearing persons, noting their desire to maintain previous friendships and their belief that they had little in common with deaf persons. Nevertheless, some expressed a preference for deafened persons, the congenitally deaf or the hard-of-hearing. On the surface, other deafened persons might represent an ideal peer group in their sense of belonging to the hearing community, their shared frustrations of the recent past, as well as common problems relating to the present and future. On the other hand, for this affiliation to be realistic, there would have to be opportunities for meeting one another, and other commonalities such as age, education or interests. Those who indicated a preference for deaf or hard-of-hearing companions noted the frustration of communicating with hearing persons, the empathie understanding of hearing-impaired persons, the ease of communication, and the resultant enhancement of their social life. Although the prelingually deaf do not typically associate with the hard-of-hearing (Higgins, 1980), the deafened may well do so because both share a superior knowledge of language and more extensive education compared to the prelingually deaf. Indeed, several respondents reported participating in various clubs or organizations for the hard-ofhearing . An examination of family background revealed that 11 deafened individuals had hearing-impaired relatives, including spouse (N=T), sibling (N=I), mother (N=2), or father (N = I), who were prelingually deaf (N=5) or hard-of-hearing (N=5). Note, however, that the marriages occurred subsequent to the loss, leaving only four deafened persons who had hearingimpaired family members at the time of the loss. With respect to adjustment, respondents alluded to emotional symptoms reported in earlier investigations of deafened persons (Ramsdell, 1947/1978; Knapp, 1948; Zekel, 1950) including initial fear, anger, and denial; later depression, confusion , tension, and anxiety in social situations; and fragile self esteem (Orlans, 1985). Our deafened respondents coped in various ways, some simply withdrawing from social situations, others seeking rehabilitation services and information about their condition. Major changes in lifestyle did not necessarily lead to or stem from the use of rehabilitation services. Although 16 deafened subjects changed careers, few used vocational rehabilitation services, and even fewer used counseling services. What is particularly striking is the absence of any relation between the reported use of personal or vocational rehabilitation services and subjective reports of successful adjustment. One respondent , who had considerable knowledge of counseling services in Ontario, was emphatically negative about such services: "I have never found a counselor who understood what it meant to be deafened; I was either treated like the hard-of-hearing or like the born deaf." That this is not merely "sour grapes" is suggested by the excellent adjustment achieved by this subject on his own. Other respondents drew attention to problems with tinnitus (head noises) and balance. They noted, with dismay, that personnel in agencies for the deaf had little knowledge of such commonplace problems. Others were pleased with the new technical devices for the deaf but dissatisfied with their cost. Respondents were almost unanimous in citing communication as the basic problem—the root of most other problems. Some found a reprieve in communication with other deaf or deafened people. "Knowing and meeting others like myself made all the difference in my life ... It made me feel part of the world." Most resorted to some combination of speechreading and writing and expressed the inadequacy of both. Said one: "I find some people very difficult, if not impossible, to lipread," and another: "I don't blame hearing people for not wanting to be bothered with a flurry of note-writing." Perhaps the problems associated with the course of adjustment can best be conveyed by specific examples. Accordingly, four contrasting cases are presented. Two individuals supplemented their questionnaire responses with a letter detailing their persona] history; two others participated in a personal interview with one of the authors. Case Study No. 1—Margaret Margaret was 21 at the time of the present study and experienced a sudden loss of hearing at 16 years of age from tumors on the auditory nerve. ] felt lost, afraid, and frustrated—at times, I would break down and cry my head off, right there in class. My best friend deserted me when I needed her the very most. I was hurt. . . I had become quite depressed over it all and felt isolated, too. What ¡finished Grade 11, 1 had to have surgery on a tumor. After, I went back home, recuperated, and stayed therefor three years doing nothing and associating with practically nobody . . . 1 became so depressed . . . 1 felt that I just had to do something, so one day, I packed up and left for_____Here 1 started the Vocational Rehabilitation Services program ... I changed quite a bit. I knew I had to be out with other people or 1'dgocrazy. . .I'm depressed at times, though it's much better than before. . . They think you 're stupid or dumb because you can't hear. . . My deafness still bothers me a lot. . . I need to try harder. . . That is the only way to get friends. . .Because I have spent most of my 21 years in a hearing environment, I feel that is where I belong, deaf or not. . .I'd like to meet others who have lost their hearing. . . Most organizations are for the born deaf. Case Study No. 2—Gerald Gerald, currently 54, began to lose his hearing at 25 years from Meniere's disease, and was profoundly deaf by age 43. He was a partner in a professional practice for many years but left when his hearing loss became significant. 202 AAD/July 1989 Perspectives on Deafened Adults I am on my own bemuse my associates were fearful of the reaction of their clients . . . I immediately acknowledge my hearing impairment when I meet someone. I try to avoid stressful situations. . .Iget consolation from the fact that, in spite of the handicap, I have coped and done okay ... 7 have lost few clients because of the impairment. I just try to give better serince . . . I try to avoid crowds and strangers. . .lam not a person who is easily depressed or discouraged. I have found the greatest assistance from other hearing-impaired persons . . . but I do resent the limitations . . . It has hurt me professionally. My income is less than if I could hear. . . I am cut off from so much communication. I am not able to realize my potential . . . Strangers often treat a hearing-impaired person as if he is stupid . . . Yes, there is certainly stress. No one with hearing really understands . . . 1 do not go to any big social events if I can avoid them bemuse I feel my inability to communimte will be counter-productive . . . I prefer rmding ... 1 do a lot of mrpentry at home. I enjoy this . . . J have lost no friends bemuse of hmring impairment. I have continued to make new friends. . . One of my biggest problems is that I am, by nature, an extrovert . . . Now I have definitely become more introverted . I do not know my sons as well as I would like. At meals, they will be chatting with their mother. I mostly am silent. . . One thing I found that helps is to socialize with other hmring impaired. Other than at agency meetings, I have not socialized with the hearing impaired. . . I am still most comfortable with the hearing. Case Study No. 3—Louise Louise, currently 49, was 44 when she suddenly lost her hearing. She had been employed as an administrative assistant but was unable to continue this work. Wlten I lost my hmring, at first my only reaction was, what do I do noiv? Hoioever, after six months, I bemme fearful and frozen into immobility. . . The specialist sent me to a psychiatrist . . . Vie psychiatrist simply stated, "Tins is a new experience for me; I've never dmlt with a deaf person before." He put me on heaiy drugs for six months and I slept most of the time. During this period, I realized that help was not forthcoming here, except from myself. 1 stopped seeing the psychiatrist, threw away the pills and bemme a volunteer at _______ hospital in the mediml library, and lived in constant fmr that a doctor would ask me a question which I wouldn 't understand. A yearlater, after many rejections, I got a part-time job. While I'm still doing it, I dislike it very much, as it is too simple with no mental stimulation or use ofmy intellect. . .!feel that the most horrendous part of being a deafened person is the isolation and loneliness that we live with . . . loss of self-esteem due to inadequacy of obtaining a good job, loss ofso-mlled friends, and most important of all, the lack of self-motivation . . . I find a lot of people impatient, mn't be bothered, or 'forget' I'm deaf. Indeed, life is stressful, either with people or without. I do a great many things on my own, a very lonely way of life ... My attitude now, five years later, in some ways is ivorse than it was in the beginning. Externally, lam self-confident, smiling, and always pleasant. Internally, it is a daily battle to motivate myself and fight the loneliness, isolation, and lack of self-confidence . . . It has affected my recreational, educational, and vocational choices . . . There must be an easier way; I just haven't found the "key" yet. Case Study No. 4—Victor Victor, now 29, started to lose his hearing from Meniere's disease at 15 years of age and was profoundly deaf by 20. Going to school bemme a nightmare for me. I was afraid the kids would laugh at me bemuse I wore a hearing aid. I was afraid 1 would misunderstand the teacher. All myfmrs mme true. . . I bemme a loner . . . Getting work was hard, at first ... 7 concentrated on getting jobs that didn't require a lot of interaction with others, routine jobs . . . Then one day I told myself, "That's it, Imn do more than this; Imn think, lean talk, Imn write, I just mn 't hear! " When Igreiv more confident, my sense of humor resurfaced . . . Humor helped me make friends and keep them . . . I've never found a counselor who understood what it mmnt to be deafened. I was either lrmted like the hardof -hmring or like the born dmf. I'm neither; my needs and experiences are different... 7 lmrned a few lessons in coping, and the most important of these is honesty. . .IfI walk into a store and speak to a clerk, the first thing I do is to say that Tm deaf and tlrnt ive may have problems communicating but, if so, I would appreciate written responses. Last, but not least, I smile ... if you wear an aid, it tells them you 're not bluffing, but you must tell them what the aid can't do. I can Ί do things like listen to music and attend plays but there are many things I can do, like ivatch closed-captioned TV programs and go to foreign films with subtitles. My knowledge of sign language comes in handy when some plays are interpreted. But for most of my recreational activities, I don't need hearing. You don't need hearing to hike, swim, play baseball, or just sit and watch a beautiful sunset. So I can't hear a babbling brook. Big deal! I can wade in it ... I still have bouts of tinnitus, it's just something you have to live with. You just have to learn to ignore it and relax . . . Service agencies do not, as a rule, provide anything for people like us. You have to go out and get it yourself. These glimpses into the lives of deafened individuals provide concrete illustrations of the issues that surfaced repeatedly with other respondents—communication problems, loneliness , the fear of appearing stupid, the massive injury to self esteem, underachievement directly attributable to hearing loss rather than inability, and the primary affiliation, in theory if not in fact, with the hearing population. The situation is not entirely bleak, as could be seen by Gerald's and Victor's acceptance of their loss and their achievement of some measure of satisfaction with their restructured lives. What was articulated clearly and strongly by most respondents was the factor that has been least understood by professionals—the difference between deafened persons and prelingually deaf persons. The latter may need help to develop social and employment skills and to enlarge their frequently limited concept of the world and to find their appropriate place in it. In contrast, the former need help in restructuring their world and affirming their role or identity within that new structure. Funding to implement appropriate programs for the deafened may be in short supply, but one major change can be incorporated at little or no cost—an increase in the understanding of and empathy for deafened persons. AAD/July 1989 203 Perspectives on Deafened Adults References Altshuler, K. Z. (1971). 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