Dr. Ross on Hearing Loss
Personal and Social Identity of Hard of Hearing People
by Mark Ross, Ph.D.
In considering the personal and social identity of hard of hearing people, in the very fact that such an issue is framed for discussion, we clearly mean to contrast our situation to that of people who are physiologically deaf, or who consider themselves socially and culturally Deaf in spite of the existence of significant amounts of residual hearing. But even though it is undisputed that Deaf people exhibit more cohesion and sense of a common destiny than do those who are hard of hearing, we know that it would be extremely simplistic and inaccurate to characterize them as a monolithic entity. There are divisions among deaf people depending upon when the hearing loss was sustained, where their education took place, and their preferred communication system. Within the prelingually deaf category, there are subgroups based on religion, ethnicity, common interests, etc., just like in the larger society. Deaf people join these groups to assert their identity both as a Deaf person and as a member of some other category distinct from their hearing losses. But it is important to note that the common factor underlying these subgroup affiliations is their deafness. Indeed, it has been estimated that over half the prelingually deaf people, at least in the more developed countries, are affiliated with some type of local or national group organized on the basis of their common hearing condition. For the majority of Deaf people, then, there is clearly a personal and social identity as a Deaf person, one that is reflected in their affiliations and loyalties.
Parenthetically, I would like to point out that these comments do not necessarily apply to people whose total deafness was sustained in adulthood. This group is a special case, as we have already seen in some of the papers presented, and yet to be presented, at this Congress. Physiologically deaf, that is with little or no usable residual hearing, late deafened people are nevertheless recognized, and recognize themselves, as a group with overlapping, but still distinct needs and characteristics than either the prelingually deafened or the hard of hearing.
As an audiologist for many years, I must say that I feel most comfortable with the physiological aspects of deafness; the fact that its impact is so different depending upon life experiences testifies that much more is involved in the acquisition of personal and social identity than the extent of the hearing loss. For example, I always feel a little surprised, after talking to a person with a hearing loss on the telephone, to have that person identify him or herself as "deaf". If they could carry on a conversation with me on the telephone, how can they possibly be "deaf"? But this is the Audiologist in me speaking; these experiences serve as a gentle reminder that self-definition involves more than an audiogram.
The purpose of my paper, however, is to discuss "The Personal and Social Identity" of hard of hearing people and not Deaf people, either prelingually or postlingually deafened. My basic theme is that hard of hearing people are a unique, though heterogeneous group, with needs and existential realities different from those manifested by those who are socially or culturally Deaf . Of course, people with hearing losses of whatever degree have much in common, and of course there are people with confused and overlapping identities based on personal realities, but these gray areas should not obscure the valid generalities that can be made. Hard of hearing, in other words, is not some lesser manifestation of "deaf" but a disability entity in its own right. Of all the confusions that arise regarding hard of hearing people, this one has, I believe, the most far-reaching consequences. Many government bureaucrats and educators do not like, or understand the necessity, of making this distinction. They much prefer to join deaf and hard of hearing together into one category. It makes for a much neater classification system, and precludes the more expensive option of providing a separate program and different services for both groups.
One major reason why we cannot easily define the "personal and social identity" of hard of hearing people is precisely because there are so many of them - of us - in our societies. In the US, it is estimated that almost one out of every ten people has a hearing loss of sufficient magnitude to interfere with communication in some situations. I suspect that the incidence of hearing loss is at least as great, if not more, in other countries in the world. There are people in every family, and in every social circle, who have a hearing loss; indeed a hearing loss is one of the most common two or three impairments that beset human beings. It is also, perhaps, the most misunderstood, in part, probably, because it is so common. After a lifetime of living with one's grandmother or spouse, for example, we simply do not expect, understand, or know how to deal with the kinds of behaviors that occur when a hearing loss develops in later life. It has been termed "An Invisible Condition" (Stone, 1993), not because the damage to the auditory system is hidden from our view, which of course it is, but primarily because the effects can be so misunderstood, even by the persons who are themselves afflicted with the condition.
People generally understand the concept of total deafness, that is, the inability to hear any sound at all. By understand, I do not mean to imply that the general public is empathetic to the plight of totally deaf people, or that society as a whole responds sensitively and appropriately to their situation, only that the concept of total deafness is much easier to comprehend than partial particularly late developing, hearing loss. The auditory behavior of people who are completely and physiologically deaf is consistent: when sound occurs they do not respond - period. Not so for people with partial hearing loss, those who are hard of hearing. They may or may not respond to particular sounds, either speech or other acoustic stimuli, depending upon such factors as distance, level and spectrum of competing sounds, the degree of hearing loss and the shape of the audiogram, and the effectiveness of their personal hearing aids. Their speech and language skills will be variably affected depending upon when the hearing loss was sustained, that is in childhood or adulthood, the degree and nature of the hearing loss, and the effectiveness of subsequent therapeutic programs. In spite of all these differences, and in spite of their self-identification, we can define them as physiologically "hard of hearing" if they developed their linguistic skills primarily through the auditory channel, and if they are capable of comprehending verbal messages through listening alone.
Aside from variations in the extent of the hearing loss itself, it is whether the hearing loss occurred as a child or as an adult that has the greatest impact upon subsequent behavior. The life course confronting hard of hearing children with congenital or pre-lingual hearing loss is quite different from that facing people whose hearing losses were sustained later on in life. While the label "hard of hearing" can fairly be applied to both groups, issues of personal and social identity will be quite dissimilar. Complicating, and often producing later identity preferences, are the children's early life experiences; when a hearing loss is first detected in a child, we don't know if the child will eventually function as hard of hearing or deaf. This depends, in large part, on the nature and skill of the educational and therapy program provided the child. We see, and for the last 40 years I have personally seen, many potentially hard of hearing children function as educationally and socially deaf because of inadequate educational programs, particularly in the poor use made of the children's residual hearing (Ross, 1990; Ross, Bracket & Maxon, 1991). I consider these children as suffering from "iatrogenic", that is "treatment caused" deafness -- or, in this case, the lack of appropriate treatment. At the extreme, in spite of the existence of significant amounts of residual hearing, many of these children are indistinguishable from those with little or no residual hearing, the physiologically deaf. It is, after all, the presence of residual hearing that distinguishes these children from totally deaf children, and if the residual hearing is ignored or inadequately stimulated, the differences between them become obscured. As these potentially hard of hearing children mature, they take their place in the deaf community in which they find their personal and social identity. For all intents and purposes, they are "Deaf"
But let us, for our purposes here, assume that the child emerges from his or her pre-school program as a functionally hard of hearing rather than a deaf child - I specify pre-school since for children with congenital hearing losses this is the crucial educational period - and is being educated in the regular primary and secondary schools. How do these children face the personal and social identity issues that may confront them during and after their enrollment as hard of hearing children in regular school?
These are the children who are often labeled "forgotten" (Davis, 1990). They appear, and they do, perform better on speech, language, and academic tests than deaf children, although they will typically be deficient in these areas compared to normally hearing children. Often a hard of hearing child may be the only such child in a classroom or school. They're the only ones who wear hearing aids and auditory training systems; they are further marked by being the ones often called out of the classroom for special tutoring; and because there are times when they may not be able to pick up on the rapid conversational exchanges, jokes, and idioms of their normally hearing peers, they may be and feel isolated from the larger group. In the fact that their primary mode for their initial-linguistic development was auditory, they are more like their normally hearing peers than they are like deaf children whose primary communication mode is visually based. In the fact that the hearing losses of the hard of hearing children often act as a barrier to complete inclusion in the larger group, they may feel isolated from the "mainstream" and, indeed, feel "deaf". But they are not deaf and they know they are not deaf. Indeed, they may not even know any deaf people.
These children do have conflicts in personal and social identity, and even though I am a strong advocate of their continued placement and education in regular, or modified regular school settings, we do these children no service by ignoring the realities that may confront them. On the positive side, we can ease their path: we can ensure that we have made the most use of their residual hearing; we can provide them with additional and enriched tutorial services; we can educate the normally hearing classmates regarding the realities of a hearing impairment; we can help build the hard of hearing child's self-esteem through focusing on areas in which he or she excels; we can work very hard to foster self-acceptance, for with that comes the likelihood of acceptance by one's peers; and, finally, we can ensure that we "remember" their special needs and special problems. "Making" it in the regular school is not easy and it's not painless, but the rewards are there. The academic performance of the average hard of hearing child is far superior to the average deaf child; when hard of hearing children finish school they have many more vocational opportunities, with a consequently higher socio-economic status than deaf people. And, perhaps most importantly, they now have the means and the opportunity to make choices - in their identity, in higher education, and in their vocations (Ross, 1992).
I know, we all know, of hard of hearing children, educated partially or perhaps completely in regular schools who opt to join the deaf community. These are usually the children who felt the most isolated, the most separate from their normal hearing peers; their memories of their transition through childhood evokes mainly unpleasant and painful associations. As much as we may like to ignore these instances, this is a reality and one that we must accept. It happens, much as we would wish otherwise. If these children later find their comfort and acceptance in the deaf community, they have every right to make this decision. Some, indeed, may act as a bridge between the "Deaf" and "Hearing" worlds. But while at some point, every hard of hearing child has the right to choose their personal and social identity, this does not absolve us of the initial responsibility of helping hard of hearing children maximize their potential - which, for them, includes using their residual hearing to the fullest. When we do this, we set up a level playing field for the child, rather than pre-ordaining the identity choice by an inadequate and insensitive early educational program.
The questions of the personal and social identity of hard of hearing children seems most acute in the teen years. It is during this period that they are defining themselves, trying to decide what and who they are and what they want to be as they emerge into maturity. It is, and I'm sure that all parents of teenagers or former teenagers can attest to this, a difficult period for all youngsters, hearing-impaired or not. It is more so for hard of hearing children since they are also confronted with the choice of their hearing identity as well. They face a conflict which older hard of hearing people do not have, one which must be at least be acknowledged if we are to provide these children with the support they need.
Hard of hearing teenagers, coming out of a lifetime of being educated as a hard of hearing student in regular schools, may feel their "difference" very keenly. Often, they need the comfort of a group, young people with similar problems with whom they can identify, who can validate them as people of merit in spite of a hearing loss. It is this need that the International Federation of Hard of Hearing Young People (IFHOHYP) attempts to meet, and I do wish them well. I'm not sure how many members they have, but I'm sure they would a agree that it is only a small fraction of the potential numbers. In the United States, we've had some minimal and some abortive attempts to organize groups that focus only on hard of hearing young people; none seem to have taken root. By their very nature, however, successful or not, these must be transition programs; "young" people, to our personal regret (wouldn't we all like to keep our youth?) do not stay "young". Inevitably, they grow older. More such groups are needed, not to establish a "hard of hearing" identity akin the "Deaf" identity, but for support and self-help purposes, something that can ease their transition into the larger society. The reality, then, even for young people, is that being hard of hearing does not consign them to a recognizable group, a common identity recognized by society. They remain members of the larger society, with variable abilities to participate fully in all of its aspects. Our goal must be to create the conditions which will enable them to more thoroughly participate in the general culture, in all of its manifold aspects.
This is also the goal of the overwhelming majority of hard of hearing adults, who represent the overwhelming majority of people with hearing losses. They do not see themselves as outside the mainstream of their society. Hard of hearing adults have already formed their allegiances, completed their education, and arrived at a definition of what and who they were before the onset of the hearing loss. The hearing loss becomes an obstacle preventing them from realizing their expectations and desire to fully participate in the society; it is not a condition which defines who they are. Their focus - our focus - is on removing or minimizing these obstacles. Unlike Deaf people, we don't view our hearing loss as the defining condition for our identity, nor feel any sense of pride in the fact that we have difficulty hearing. I don't know of any hard of hearing person who, if some magic cure were available, if they could take a pill tonight and wake up with normal hearing tomorrow, would not scramble to get on the right line to receive the pill. But since such magic cures are, unfortunately, not available, what most hard of hearing people do when the hearing loss is first evident, is to deny that it exists, to themselves and to others.
Our societies are full of people who deny that they are having difficulty hearing, who project the reason for communication breakdowns onto their communication partners; these are accused of "not talking clearly" or talking extra softly, or whatever. Often, it may be years before some hard of hearing people acknowledge that the problem resides in their ears and not in the mouths of other people. But, without self-acceptance, no help will be sought and none will be given.
This is where national organizations of hard of hearing people, and IFHOH itself, can make a significant contribution. In the fact that we provide, visibility to the reality of the hard of hearing condition, that we do not feel any sense of stigma or feel somehow diminished as human beings because we have a hearing loss. By our own self-acceptance, by acting as role models and advocates, we can appeal to the many more hard of hearing people in our societies to come out of the closet, to accept and deal with the reality of their hearing losses. Right now, our best estimate is that in developed countries only about 20 percent of people who can benefit from hearing aids wear them. These percentages, as we well know, would be even poorer in developing countries. It is not just a matter of economics. If this were the only factor, then most hard of hearing people in the developed countries would be using amplification. The issue really is self-acceptance. It's not easy to move hard of hearing people out of their self-constructed closet of isolation and despair. Among the hurdles that must be overcome are the association of hearing loss with increasing age and infirmity and the psychological blow to one's self-esteem that this acknowledgment may entail.
However difficult this may be, the alternative is worse. People in contact with a hard of hearing person are aware that a problem exists. They note the misunderstood words, the unusual or irrelevant responses to spoken comments, the repetition of previously covered material, the withdrawal from conversational situations or attempts to dominate conversations - they can see, in other words, the effects of the hearing loss. If these other people are not aware that the hearing loss is the primary cause of these aberrant behaviors, then they will attribute these strange responses to other reasons, such as senility, aloofness, ignorance, or mental illness. The preferred choice seems obvious.
I have already alluded to the fact that I don't think that a "hard of hearing" entity exists. So it is ironic in a way that the first step in any kind of remediation effort is for people with hearing losses to acknowledge that they are indeed hard of hearing. But what they are acknowledging is a condition and not an identity. If we - and by we I mean the many national organizations of hard of hearing people represented here - are successful in recruiting new members, this does not mean that they have acquired a new identity. What it does mean is that they are seeking support and information so that they can more effectively continue their usual pursuits. They may come to our organizations feeling somewhat stressed and overwhelmed by the impact the hearing loss has been having on their lives. Perhaps there has been conflict in the family because of communication breakdowns, or one's whole pattern of life has been disrupted because of an inability to continue former social, cultural, or vocational activities. The group support is not aimed at developing a new identity, but is aimed as assisting a person to assume his or her previous identity, and by this I mean one's former pattern 1of behaviors as much as possible.
In a sense, our success with people who join our organizations is often our failure as well. Many of the people who come through our organizations, and take the benefits that a self-help and advocacy group can offer, later leave the organization after they have received these benefits. They don't stay with the group precisely because this group membership does not define their identity. In this respect, organizations of hard of hearing people function much like many, but not all, support groups in general. When the presenting issue or problem has been resolved, the feeling is that there is no longer any point in staying involved.
I think we need another model for hard of hearing people, one that overlaps and extends the traditional benefits of support group interactions. We need to define ourselves not as a common identity, but as a common interest group, a constituency if you will, that speaks out and represents our welfare. In this respect, the model I would like to see adopted is the one represented by the American Association of Retired Persons (AARP). This group represents the interests of older people in the US and has 33 million paid members. None of the politicians or bureaucrats in our country would take any action, in any matter affecting older people, without at least considering the response of the AARP. Older people are members of this organization purely on the basis of self-interest, but by virtue of their membership, they are also helping other older people as well since they add numbers to the power and influence of the organization.
Hard of hearing people, on the other hand, rarely join or stay members of organizations composed of hard of hearing people. Perhaps we should also start appealing to self-interest. For example, there are 24 million hard of hearing people in the US, but of them only about 25,000 belong to Self Help for Hard Hearing People, either at the local or national level. Proportionate to the possible membership, we represent a minuscule number of hard of hearing people. If in spite of our relatively few members, we have been effective advocates for hard of hearing people in our country - thanks to our founder Rocky Stone and his successor Donna Sorkin - just imagine how effective we could be with 100 times the number of members?
The point we must get across is that by joining with us, they are not thereby redefining their central identity. What they are doing is what democracies generally do: groups form themselves into constituencies that represents their interest. And their interest is not to separate from society, not to develop a sub-culture of hard of hearing people, but to so structure society, in particular in reducing the impact of the hearing loss, so that they can more fully be a participating member of the larger society. Hard of hearing want to be part of what they've always been part of, their hearing families and friends, their work, their familiar world, and the continued opportunity for self-fulfillment in all of its manifestations.