by Donna L. Sorkin
Participating in Self Help for Hard of Hearing People,
whether at the National, state or local level, demonstrates that we are
all part of a community of people who experience what we individually experience.
our involvement helps us to better understand our own needs as hard of
hearing people and to see solutions that have worked for others that might
also help us.
Unfortunately, most people with hearing loss do not
have the same opportunities for information sharing as those of us who
are members of SHHH. As members, we are fortunate to have each other's
support because the vast majority of people with hearing loss do not identify
with other hard of hearing people, and a great many do not even admit that
they have a hearing loss. Indeed, by and large, we are a group of people
who are often invisible to government, invisible to business, even invisible
to those of us who have a hearing loss. Consequently, our needs are misunderstood
or not thought about at all.
Developing an Identity
The topic "Developing an Identity for People
with Hearing Loss" is a subject that I've thought a great deal about
and worked intensively on in the past three years since joining SHHH. Likewise,
it is something that I hope that you as SHHH members will focus on. I believe
that there would be tremendous benefit in establishing such an identity
but, at the same time, I think that there are inherent conflicts in doing
so. This article will examine the potential benefits as well as the conflicts
that make such efforts difficult.
No Hard of Hearing Culture
Not long ago, I was asked by a young woman to appear
in a video that she hoped to produce about "the hard of hearing culture."
"Excuse me," I said. "I'm not sure
that I understood what you said. A culture of hard of hearing people?"
SHHH dedicates itself to providing hard of hearing
people and their families with information and support enabling people
to live productive and fulfilling lives. In addition to our national organization,
many of our members gain support from others like themselves in our 250
local chapters that thrive in communities all across America.
Like hard of hearing people everywhere, our members
seek adaptations that will allow them to live in the mainstream of society
-- not in a separate enclave of people who are distinguishable from others
only by virtue of the fact that they do not hear well.
My own personal experiences support this perspective.
I grew up with hearing loss in my family -- both my father and paternal
grandmother were hard of hearing. With hearing aids, which my father wore
for 20 years, he generally functioned well in quiet settings at close range
from the speaker. Working, however, became increasingly difficult. Using
the telephone became arduous; and participating in large meetings -- a
key part of his job -- became impossible. The constant strain of not hearing
eventually forced my father's early retirement at age 52.
My father never discussed the health issues that
made working impossible, though it was obvious to all who knew him that
he was not ready to retire. I assumed at the time, as did other family
members and friends, that his early retirement was necessitated by high
blood pressure and angina exacerbated by his work environment. It was not
until my own hearing deteriorated, well after his death, that I learned
from my mother the real reason that he had retired. By then, I understood
only too well the frustration he faced in trying to perform a job requiring
high levels of communication. In 1970, the concept of making accommodations
for employees with hearing loss to enable them to perform their job was
unheard of.
My father died before passage of the Americans with
Disabilities Act, landmark legislation passed in 1990 that requires public
facilities, including work places, to provide reasonable accommodations
for people with disabilities. Like most people of his generation and many
today, my father did not discuss the problems that his hearing loss caused
for him. It was a burden that he kept to himself and, consequently, one
that I did not understand until I was faced with it myself in my mid-30s,
the age when my own hearing changed so dramatically.
The stigma associated with hearing loss contributes
to the reason many of us avoid discussing the impacts of hearing loss,
in the same manner that my father avoided talking about his difficulties
at work. Indeed, many people do not even openly discuss the fact that they
are hard of hearing. As a consequence, the vast majority of us still don't
seek the technology and other adaptations that can dramatically improve
one's ability to communicate.
I experienced a progressive hearing loss as an adult
and remember well how I struggled to find solutions that would allow me
to retain my ties to friends, family, and work in a world in which most
people hear normally. I always sought strategies that would enable me to
function effectively in the hearing world, and it was this desire that
led me some years ago to the unique type of aid provided by SHHH.
Unlike my father,
I was fortunate to know other people who had successfully utilized technology
and other means of coping that helped them remain in the work force and
enjoy a variety of social activities. I also learned from others the skills
that I needed to be open about hearing loss and tell others what I needed
to be able to communicate effectively. But, like my father and my grandmother,
I never considered myself to be distinct from other people simply because
I could not hear well.
People who are part of Deaf culture do not view their
inability to hear as something that needs to be "fixed." Rather,
they believe they are a subculture which has its own language, American
Sign Language. They embrace their deafness with pride and note that they
have a cultural identity all their own. Many deaf parents cheer when they
discover that their newborn child shares their deafness. Indeed, I recall
after I asked a young deaf man about his new baby, being told by him with
enormous pride that his son was "profoundly deaf, third generation."
There is even a sense of suspicion about those who
hear normally among some deaf people. One deaf activist spoke about this
wariness of outsiders, those who are not a part of Deaf culture. She said,
"If I happened to strike up a relationship with a hearing person,
I'd have considerable trepidation about my deaf parents reaction. They'd
ask, "What's the matter? Aren't your own people good enough for you?"
And they would warn, "They'll take advantage of you. You don't know
what they're going to do behind your back.' " (New York Times)
Although most of our hard of hearing SHHH members
are comfortable with who we are -- many of us would readily seek a "cure"
if a safe and reliable method of reversing hearing loss were available.
This attitude of seeking improvements further distinguishes us from people
who consider themselves to be part of Deaf culture -- people who would
not choose to hear even if that option were possible.
So, to return to the young woman's request to appear
in the film about a hard of hearing culture. Once I clarified the topic,
I declined. I told her that I felt that hard of hearing people had a different
approach to their lives than deaf people who have their own language and
consider themselves to be part of a separate culture. In fact, our objectives
are just the reverse; those of us who are advocates for self help endeavor
to assist people to develop the skills and self-confidence to live in the
mainstream of society.
Further, a large number of people do not identify
themselves as having a hearing loss. Many deny the fact that they are hard
of hearing, and some simply are unaware that they are missing things. And
even when people do address their hearing loss in a productive manner,
the vast majority are not involved in organizations like SHHH. We all know
how difficult it is to reach the people who need our help. But the fact
is that most don't desire to be so involved. Unlike people who are part
of Deaf culture, hard of hearing people generally don't, as one of our
members once remarked "cluster together" like ethnic, religious
or other interest groups.
What Should Be Our objectives?
Given the fact that we are not and likely never will
be a "culture" in the same sense that there is a Deaf culture,
what can we do to better accomplish our objective of raising public consciousness
about hearing loss? What might be done to improve the public policies of
government and the private policies of the business sector to better address
our preferences and needs? How could we be more effective in reaching individuals
and encouraging them to take advantage of behaviors and strategies that
could help them live fulfilling lives?
Without attempting to promote a "culture,"
can and should we attempt to develop an identity for ourselves -- people
with hearing loss -- and thereby serve to increase public understanding
and bring about societal change? These questions are the focus of the remainder
of this paper.
Population Characteristics
It's instructive to take a look at our demographic
characteristics and numbers. The total population of people with some degree
of hearing loss in America, mild to profound, is between 24 and 28 million
-- with the range affected by who is doing the counting. That number is
approximately 10 percent of the United States population.
We also know that the incidence of hearing loss varies
by age. Approximately 2 percent of children, under 18 years of age, have
some level of hearing loss. By age 40, the incidence of hearing loss rises
to 10 percent. And by age 65, one-third of the population has a hearing
loss. Further, of the 24 to 28 million people with hearing loss in America,
perhaps two million have a profound hearing loss. That two million translates
to between seven and eight percent of the population of people with some
level of hearing loss.
I have a profound hearing loss and fall into this
category. With cochlear implant surgery and follow-up rehabilitation, people
who are adventitiously deaf now have the opportunity to have some level
of hearing restored. Increasingly, children who lost their hearing before
learning to speak are able to benefit from cochlear implants. They too
can learn to function as hard of hearing people with appropriate rehabilitation
programs just as I now function the same as a hard of hearing person who
has been effectively fitted with hearing aids. Although I am clinically
deaf, I never refer to myself as being deaf because I wish to emphasize
the fact that I use my residual hearing.
So, what can we say about the characteristics of
those with profound hearing loss? What percentage are people like myself
who function as hard of hearing people and live entirely in the hearing
world?
It turns out that people who rely on sign language
as their primary mode of communication comprise a small proportion of the
population of people with hearing loss. It has been estimated that between
300,000 and 400,000 Americans with profound hearing loss rely upon sign
language as their primary mode of communication. People in this group generally
consider themselves to be part of what is referred to in America as Deaf
culture. Although they are very visible and have enjoyed extensive coverage
in the popular press, in fact this group comprises no more than two percent
of the entire population of people with hearing loss.
Although people who rely on sign language and tend
not to use their voices comprise a small proportion of the total population
of people with hearing loss, Deaf culture has become a very visible and
influential group in America. And, consequently, government and the general
public increasingly equate the preferences of this group with the needs
of anyone who has a hearing loss. We have seen this develop in many ways.
We receive many letters from people complaining that
they have called ahead when they planned to attend a meeting with government
officials or others and asked for hearing accommodations, specifically
assistive listening devices or captioning, and been told, "Oh, but
we will have sign language interpreters." And when they explain that,
like most people with hearing loss, they don't know sign language they
are met with bewilderment on the other end. This response is becoming commonplace
all over the United States. And it is happening because deaf people have
been visible and outspoken and especially organized about their needs and
rights. And it is entirely appropriate for them to do so.
The problem lies in the fact that we, as hard of
hearing people, have not been so organized about articulating our own needs
and our rights. Deaf people have also been successful in not only making
the public aware of their needs but also making their preferences widely
recognized as being "the right thing to do."
I recently attended a fund raising dinner for a center
providing audiological and medical services for people with hearing loss.
The attendees were a diverse mix of parents of deaf and hard of hearing
children who were patients of the center; scientists, physicians and audiologists;
and hard of hearing people, like myself. Although the event, which featured
a well known political figure as the speaker, provided an American Sign
Language interpreter, there were neither assistive listening devices nor
captioning. I had not inquired in advance about hearing accommodations
because I had assumed they would be provided. How ironic that even at a
dinner organized for a hearing center, the organizers had succumbed to
political correctness and provided an interpreter but had failed to think
about the needs of the very group of people who are the recipients of the
center's services. I saw no one at the event using the interpreter but
several would have been grateful for assistive technology that would enhance
the effectiveness of their hearing technology.
Coverage of Deaf culture in the popular media --
television, radio, and print -- has been extensive in recent years. After
hundreds of years of repression, Deaf people are now proud of their language
and the unity they feel in having a culture that binds them together. Sign
language, the discussion of a subculture, even some of the more outrageous
claims made by Deaf activists -- all these make good copy. At the same
time, hearing aids are rarely the subject of news accounts.
Certainly such efforts could hardly be viewed in
a negative light; any activity that serves to educate the public about
the needs and preferences of a disability group is worthwhile. Further,
there are many instances in which hard of hearing people and people who
communicate with sign language share common needs and thereby benefit from
each other's increased visibility. SHHH has formed strong partnerships
with organizations representing deaf people at the National and local levels
to promote telecommunications relay services as well as the expansion of
captioning on television, on videos, and most recently in movie theaters.
The Americans with Disabilities Act requires the provision of whatever
accommodations the individual needs to fully participate in society. We
have worked closely with the Deaf community first, on passage of ADA, and
most recently, to ensure that the Act is enforced. So, certainly, there
have been many positive outcomes for hard of hearing people as a result
of greater awareness about deafness.
The problem from our perspective is that the absence
of comparable discussion of hard of hearing needs leads the general public,
as well as people who know better, to lump everyone's needs and preferences
together. There is a perception that the group of people who use sign language
is significantly larger than it really is. And, as a group, we have been
relatively ineffective at communicating our message.
The reasons for this are complex and not, I believe,
easy to resolve. Among the factors are that many people who are hard of
hearing do not identify themselves as such and also that our objective
is often to help people live in the mainstream, not to focus on their hearing
loss.
There's another important and related theme that
I've often heard articulated. Having a hearing loss, wearing a hearing
aid, is not the same as wearing eye glasses. There is a reticence, almost
a shame, about having a hearing loss that often discourages a hard of hearing
person from seeking help and taking productive steps. Some people describe
this as the "stigma" of hearing loss.
I'd like to share a story about a man I know. He's
the husband of a dear friend whom I have known most of my life. She knew
me when I had normal hearing. And she watched and tried to help as my hearing
deteriorated. Among all my friends, I think she probably understood best
how painful it was for me to lose my ability to function in many settings.
Some months ago, her husband experienced a sudden
profound hearing loss in one ear. He floundered around a bit and eventually
consulted with a local otolaryngologist who started him on a drug treatment
but gave him no information on the likely impacts on his ability to hear.
But what was even more telling was the fact that
his response was to deny he was having problems and avoid telling anyone
about what had happened. Not even his wife's close friend who has a hearing
loss and heads the national organization of and for people who are hard
of hearing. She told me quietly, when no one else was around, only because
he had admitted to her that he was having a great deal of difficulty hearing
in noisy environments and she was seeking advice. Although I probably should
not have been so surprised, I was absolutely floored by their response
to hearing loss.
The stigma of hearing loss manifests itself in many
ways. But the outcome is always the same. People neglect taking steps that
could help them. Family members, friends, teachers, co-workers and acquaintances
make inappropriate judgments. The individuals sense of self-esteem suffers,
and he or she is prevented from living their life to full potential.
Possible Actions
I would like to conclude with some suggestions for
possible actions that all of us, members of Self Help for Hard of Hearing
People, might collaborate on to address these issues. How marvelous it
would be if we could set in motion a movement all across our country to
increase awareness and understanding of our needs and preferences. And
how much more effective our individual efforts might be if we could do
this together.
A logical place to begin our effort would be to more
carefully encourage media coverage in your local newspapers, radio, and
television stations that highlights both the benefits of technology and
the importance of providing other kinds of support to people who are hard
of hearing. Such public discussion gives others an opportunity to be both
knowledgeable about issues, and, if they so chose, be a participant in
them.
Our experience at SHHH has demonstrated that it often
takes multiple "hits" or contacts with a hard of hearing person
before they take action about their hearing loss. Learning about and seeing
others address similar concerns in a successful fashion is the best way
to encourage someone to take action that can help them.
I believe we should encourage positive news stories
about people of all ages demonstrating that technology and other strategies
can help people live normal, productive lives. Unfortunately, as many of
us are all too aware, gaining such media coverage is often serendipitous
and can be dependent upon factors beyond our control. At the same time,
I can also attest to the fact that given consistent efforts to gain such
attention, one can gain positive results -- at least some of the time.
Secondly, I think it is imperative for us to distinguish
between our needs as people who want to use their residual hearing from
Deaf people for whom sign language is their preferred mode of communication.
Although there will always be areas of collaboration with Deaf people,
and we should strive to find these and work together, there are also important
differences in how we chose to communicate. By not clearly delineating
these differences, we confuse government, business, the general public,
and people with hearing loss. I encourage you to speak up about what your
needs are. Ask in advance that accommodations -- assistive listening devices
and real-time captioning -- are provided. Explain to people that like most
people with hearing loss, you don't know sign language but you do want
to use your residual hearing to the extent that you can.
If all of us make a greater effort to speak up about
what we need to be able to communicate and if we try more consistently
to tell our story in a compelling way to the public, we can and will be
successful in gaining the same level of understanding of our needs as deaf
people have of theirs.
Versions of this paper were given as speeches
by Executive Director of SHHH, Donna L. Sorkin at the Congress of the International
Federation of Hard of Hearing People (Graz, Austria, August, 1996), the
SHHH Northwest Regional Conference (Portland, Oregon, October 1996), a
tri-state SHHH meeting (Wilmington Delaware), October 1996), and the SHHH-NJ
Organizational Meeting (Trenton, New Jersey, November, 1996).
