Personal and
Social Identity of Hard of Hearing People
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 pre-lingually 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 pre-lingually 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 post-lingually 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 of 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.
References
Davis, H. (1990) Our Forgotten Children:
Hard-of-Hearing Pupils in the Schools. Bethesda, MD: SHHH
Publications
Ross, M. (1990). Implications of Delay in
Detection and Management of Deafness. Volta Review, 92,
69-79.
Ross, M., Bracket, D. & Maxon, A. B.
(1991). Assessment and Management of Mainstreamed Hearing
Impaired Children. Austin, TX: Pro-Ed.
Ross, M. (1992). Implications of
Audiologic Success. J. Academy of Rehabilitative
Audiology, 3, 1-4.
Stone, H. E. (1993). An Invisible
Condition. Bethesda, MD: SHHH Publications.
