A
CELEBRATION OF DIFFERENCES
Ruth
Moore
Jonathan
O’Dell
RUTH
MOORE: I work as the communication access-training specialist for the
Massachusetts Commission for the Deaf and Hard of Hearing. And Jonathan O'Dell is the director of the
Communication Access Training and Technology Services Department. When I was a
teacher of the Deaf I had a placard that said, "Ruth Moore from the
JONATHAN
O’DELL: I talked to some people
yesterday, and I told them what this presentation was going to be about, and they said they'd bring plenty of eggs and
vegetables to throw at us. Please check
them at the door. We'll make omelets
afterwards. We are going to be talking
today about some of our own personally held views, based on some of our
personal life experiences.
RUTH
MOORE: Both Jon and I are deaf. When he was born he could hear. I was born
deaf. My parents did not realize that I was deaf until I was about 18 months
old, and they were calling my name, and I had my back to them, and I wasn't
responding. When they found out my
parents were just totally at a loss of what to do. They just had no idea of how to manage the
situation, and went through a grieving process. It took them a while to be able
to return to a normal life. They got a
lot of support from their friends and they realized eventually that everything
was going to be okay.
I
went to a specialized school for the Deaf that focused on oral training, and on
speech reading. I was very frustrated,
but I didn't give up. My parents were very encouraging and after I finished at
school, I went on to
At
Gallaudet, I met a deaf man. The two of
us fell in love while we were there. On
graduation day, we flew home and got married that evening, and people thought
we were absolutely crazy. We are still married today after 39 years. We have two happy and healthy boys both of
whom are deaf also. One of them married a deaf woman and they have two hearing
but bilingual sons. My other son married
a woman who could hear. I never dreamed
that he would do that. But she's a sign
language interpreter, and they're able to effectively communicate with one
another, though they do have some cultural differences. They have no kids, but 12 pets.
JONATHAN
O’DELL: I grew up in
After
that I kind of did odd jobs, fell in love with a woman, and moved to Boston,
where I found my first professional job at an independent living center,
counseling other people on how to live independently, that's one thing I was
good at, having been independent since the age of 13. Slowly I managed to work
my way to where I am today, in a variety of different capacities. Today I work for the Commission for the Deaf
and Hard of Hearing.
I
consider myself to be a situational late-deafened person, and what I mean by
that is that I don't like the fact that sometimes we get labeled and these
labels stick to us, and we say this person is hard of hearing, this person is
late-deaf, this person is deaf. What I
am is I am a situational person. In some situations, I function fine one on
one. I usually don't have any problems
in an intimate conversational setting, but you put me into a larger group, add
background noise, the room getting dark, someone with an unfamiliar accent, and
I am lost. I need to have CART.
Listening systems alone doesn't work for me anymore. It amplifies only. I can hear but not
understand. So then, I become situationally
late-deafened. Even after all these
years both Ruth and I are finding out new things about how we feel about our
hearing loss everyday. There is a lot of animosity sometimes between the
different groups of people with hearing loss.
And I think -- and I think Ruth believes it also -- that this is due to
people not really understanding what's going on here. They don't really understand. How many hard of hearing people understand
Deaf culture? How many people who are in
the Deaf community understand what it means to be late deafened? And so, in this workshop I intended as a little
bit of a dialogue about these things and share some of the ideas that we've
come up with.
RUTH
MOORE: My first years at Gallaudet were
not easy because at that time, a lot of deaf people did not use their mouth a
lot when they signed. Their hands conveyed
everything. I have slowly become less oral over the years, despite my early
oral training, and can function in the Deaf community and use American Sign
Language. Now most culturally Deaf
people are born Deaf and usually use ASL and have been to a school for the
Deaf. They might use gesture and mime,
which incorporates a lot of use of facial expression, which makes up for the
inability to hear vocal inflection.
Hearing people very often have very little affect or expression on their
face because it's all carried through their vocal inflection. Deaf people make up with that with a lot of
facial expressions for happiness or being sad.
Sometimes -- some people might think, geez,
deaf people over do it, but that is part of the culture. Some Deaf people
choose to use their voice. Some will
just use sign language. Their fluency
may vary in written and spoken English, and some rely on paper and pen as a
last resort to avoid misunderstandings. They may or may not be involved in the
Deaf community in advocacy or social events or deaf clubs.
JONATHAN
O’Dell: Now, a late-deafened person usually has a post-lingual hearing
loss. And that they will of course
continue to use spoken English. Some
people ask me how come late-deafened people continue to speak English. Most people don't decide, hey, I know that
I’m going to lose my hearing next Wednesday, so I’m going to learn sign
language today. It doesn't happen like
that. You lose your hearing all of a
sudden, very traumatically, as happened with me, and you find yourself without
a way to communicate, so obviously you are going to continue to speak and
continue to use that method of communication.
Eventually,
most late-deafened people, I believe, will learn some form of sign
language. Some people will learn ASL,
but relatively few. Most people end up
learning signed English, and doing pretty well with it. As I said before, I do tend to use CART in
complex situations, and the complexity of the situation can be caused by
background noise, it can be caused by distance, it can be caused by somebody
being so far away I can't lip-read them anymore, or any of a number of other
things. I also use paper and pen as a last resort. Most late-deafened people continue to function
in the quote, unquote – “hearing world”.
RUTH
MOORE: People who are born deaf, who have Deaf parents and are raised in an
environment where they use American Sign language, tend to identify with the
Deaf culture. So when you see the word
"Deaf, " we tend to use that with a capital D, which refers to a
culturally deaf individual.
JONATHAN
O’DELL: People born hearing to hearing parents and who use spoken language to
communicate before they lost their hearing, deaf means something entirely
different. To them it has a medical, audiological
context, as
a
loss of hearing. One thing we're talking
about here is semantics and this is important as it causes a lot of people a
lot of frustration. The hearing world,
generally tends to view hard of hearing, late-deafened and deaf people as being
dysfunctional, meaning that they cannot hear anymore and that situation is seen
as a limitation, and a barrier and a
problem and disability. They have
what we call the pathological view of hearing loss.
When
I entered the Deaf world my problem was
precisely the semantics issue. I
came over from Europe, and was very
isolated for, I would say, probably eight years or so. I was the only hard of
hearing person I met. It was pretty
sad. At 24 I found out about closed
captioning, bought myself a decoder and watched about 250 movies in the first
week. I took time off from work and sat
at home and watched one movie after another movie after another movie. Then I
found out about Deaf community, and I was like “yes!” People like me! All right!
Wonderful! Awesome! So I went to
a gathering at a local watering hole.
Now, at this point I thought of myself as being deaf and was delighted
to discover that there was a Deaf community. And I went there that night, and I
got the shock of my life. These were not deaf people like deaf people I had
ever imagined. These were people with
hands flying. There was a roomful of people, and nobody was talking. There was dead silence, except for the loud
speakers which were so loud you could feel the room shaking. But there was nobody talking. I understood
nothing. I cannot tell you how shocked I was because I had thought to myself
that these are people like myself. I
felt I was finally going to fit in and obtain support. And to make matters
worse, these people looked at me as being very different. They did not see me
as being Deaf. Perhaps Ruth can explain how she as a Deaf person feels when
someone approaches her and says “I am deaf.”
RUTH
MOORE: In the past, when I first met a late-deafened person, I could not figure
it out. They don't sign very well.
They're not using ASL. Where are
they from? That was about 10 years ago. But as I’ve come to learn more and more about
late-deafened individuals and their communication needs, I’ve made adjustments,
and reasonable accommodations. Someone
was telling me they had a date with a deaf woman, and that deaf…..
JONATHAN
O’DELL: Let me admit here that I am that friend. I had a blind date with a Deaf
woman, and at the end of it she gave me a passionate, long, drawn-out hug. And two days later, I saw Ruth at a
presentation. I was grinning from one
ear to the other and told her about it.
She smiled, didn't say anything.
Then she did a presentation with me, and somewhere in the middle Of the
presentation, she says, "Oh, in Deaf culture, everybody always hugs
everybody." I was heartbroken. I
had thought I was getting a passionate hug when it was simply Deaf culture at
work. I don't think I understand Deaf culture.
I still don't. Half of the time, my opinion used to be -- used to be –
that it was an excuse for bad behavior. And that was because I really did not
understand what Deaf culture was about. We all have, to some extent, the same
name. We are all deaf and have no
hearing. But there's a huge chasm
between being Deaf and late deafened, and if you don't know about that, it can
get you into real trouble.
My
first response from the Deaf community was hurtful. I had unrealistic
expectations. I had thought I was going
to be embraced with open arms, and I wasn't.
I was an outsider. I was more an
outsider in the Deaf world than I was in the hearing world. And it was a very, very unpleasant time for
me. I became very, very upset. I could not understand why my own people were
rejecting me.
RUTH
MOORE: I understand how you feel, because I didn't really realize that I was
Deaf until I was ten years old. No one
had every told me as I was growing up. And at the age of 10 a social worker at
our school for the Deaf mentioned that we were all deaf and that we couldn't
hear. I was actually shocked and very
confused, and at first I was heartbroken. It was only when I went to Gallaudet
University and started meeting other Deaf people who communicated in sign
language, and that I really began to accept my deafness.
Jon's
situation is quite different than mine, because he had the experience of
hearing as a child. I never did, and I’m
wondering how that feels, Jon.
JONATHAN
O’DELL: The thing that really puzzled me at the beginning was I felt so
stuck. I felt like, I wasn't hearing
enough to be hearing and I wasn't deaf enough to be Deaf. And that's a very confusing place to be. Not knowing where you belong. Fortunately, I was able to pretty much get
through that, because I have a pretty strong sense of identity, but it wasn't
an easy or enjoyable thing to go through. It would have been a lot easier if
open arms by the people who I perceived to be deaf would have accepted me.
Interestingly I married a Deaf woman, and it's interesting, that we have never
really had those kinds of issues between us.
I also had the bad fortune to run into less than welcoming Deaf
individuals. Professional, educated Deaf
people have always been pretty welcoming to me.
I think it has something to do with the educational level and open
mindedness. I also feel I have a
stronger connection to older generations simply because at that time ASL
education hadn't kicked in yet. Ruth and I, for example, both understand speech
and the importance of finding a common ground.
Recently
I went to a technology exposition and I saw a group of young Deaf teenagers
signing a mile a minute. They were signing so fast I had no idea what they were
saying. And that worries me a little bit, because while it's great for people
to have that, I’m also worried, what it means for the relationship between
late-deafened people, hard of hearing people, and people who are being brought
up to see ASL and deaf pride as a way of life.
That scares me a little bit, because I see that as something which will
divide us further instead of bringing us together to get the support we could
get if we were to speak with one voice and be seen as one interest group.
Another
problem I had to deal with is that when I came to the Commission for the Deaf
and Hard of Hearing I found they knew nothing, and I mean nothing, about the
needs of the hard of hearing population.
Everything was set up for Deaf people. And I resented that. Now I
realize, it was a stupid response of mine, because it was Deaf people, culturally
Deaf people, who have fought to get recognition for hearing loss, and who set
up these commissions and organizations and the state associations for the Deaf
and the National Association for the Deaf.
This was all due to their efforts.
And we, late-deafened folks, are, if you will, still emerging as a
population, and only recently starting to come into our own rights. And I think in some ways we need to become
more active and become more involved so we can get together and have a larger
population base from which to work from.
RUTH
MOORE: I would like to add something in
terms of late deafened and hard of hearing people and Deaf people. When we get together we tend to segregate
ourselves. At my parent’s house on holidays at first we will all be
communicating together in one way or another, but then, after a while, those
who are Deaf will be at one end of the table signing and those who can hear at
the other speaking. And I am in the middle. And I’m just wondering how we can
resolve this issue? It is very common and I saw the same thing at Gallaudet
where the native ASL speakers tend to group together and those who have been
raised in a more oral tradition, and speak and use signed English, group
together.
We're
talking about communication preferences. Some of us are more comfortable using
ASL. Some of us are more comfortable
writing back and forth. Some of us are
more comfortable signing and talking at the same time. Others are more comfortable just speaking,
and I think when we say "communication preferences, " what we mean is
respecting each other's differences.
JONATHAN
O’DELL: There is a trend these days that is happening in marketing, which is
which is specialization. You can, go to
the Internet, and you can customize the news that you get to match your
preferences. You can get just the information you are interested in, and this
scares the hell out of me, because we need to understand each other, and you
don’t understand someone else’s viewpoints if all you get is news and
information that agrees with what you believe and know. I am at the
Communication Access Department at the commission, and the one thing I will
refuse to do is if somebody asks me, "I want you to give a presentation on
Deaf Culture and American sign language, " I will say: “No, we will not do that. We will give you a presentation on deafness
and sign language and hearing loss and other methods of communication, but we
will not simply give you a presentation about sign language or Deaf culture.”
And the same is true for the
hard-of-hearing people because I think the more specialized you get in some
ways, the more you cut yourself off from other people. And I think that that is just what has been
happening to some extent in the organizations that we've formed. It is important
that we understand one another. Deaf
people must come to an Association of late-deafened adults meeting.
Late-deafened adults must go to the National Association for the Deaf or
equivalent state-level meeting.
Let’s
talk a bit about how we can learn from each other. Step one: appreciation. We have to appreciate
and respect one another.
RUTH
MOORE: Not only do we need to respect each other, but it's also important to
learn from one another and educate each other.
What does it mean to be a late-deafened adult? What does it mean to be
Deaf? We need to accept who we are as individuals, and remember that we are
people first, late-deafened or Deaf second.
We're hard of hearing or Deaf, but we're people first.
JONATHAN
O’DELL: One thing my wife taught me is that understanding is not always possible. I can never really understand what Ruth went
through in her life. She can say it to
me 150,000 times. I will still not
understand. I can respect it, I can
accept it, but I will not understand it.
A culturally Deaf person looking at me as a late-deafened person, you
will never understand what it's like to speak German, to hear German, to have
your hearing, to lose it, to be embarrassed if you have a hearing loss. To be ashamed to have a hearing loss and struggle
with those kinds of feelings. That's okay.
We don't need to understand it.
We need to accept it.
And
we need to appreciate each other's accomplishments. Sometimes hard of hearing people will tell me
that they resent that all the programs seem to be for Deaf people. Well, you know what? Without Deaf people we
wouldn't be here. If Deaf people had not
taught us how it is possible to advocate for our needs and for our services,
most of us wouldn't be where we are today.
I know I wouldn't be. So even
though I'm not culturally Deaf I owe a debt of gratitude to culturally Deaf
people because they showed us what is possible and we learned from them.
RUTH
MOORE: It's important to support each
other's perspectives. We're in a hearing
world. We can understand each other. It's important that they understand who we
are. Culturally Deaf people never know what it's like to have heard. Or vice
versa. So it is important to keep our minds open, to learn from each other and
to share with each other.
Jonathan
O’DELL: And, if it's absolutely necessary that we all band together against the
preconceptions and misunderstandings that hearing people have about all of us,
no matter whether we are Deaf, late-deafened or hard of hearing. We must work together.
I was
at the banquet yesterday, where the number was thrown out that there are 22
million people with hearing loss in the United States. First of all, that number is outdated and
gone. It is more like 28 million people,
and one wonders why with that many of us we have no power at all, compared to
some other groups which are much smaller but have learned to speak with a
single voice. We still don’t do that and we need to do that. We have to come together and work
together. We have to respect one another
and advocate for one another. We have to remember that this is, above all, a
hearing world. And we have to remember that it is more important to convince
the hearing world of our joint needs than each other of our separate needs.
RUTH MOORE: We must respect and accommodate
each other's communication preferences.
Well, hey, you know, let's try to understand each other. Let's try to communicate with each
other. That's the key. Open up.
Open your minds to the world.
Share your backgrounds with one another.
Talk to each other.
A
Deaf person will ask you first where you went to school. Where are you from? Who's in your family. Where do you work? And then make an introduction with a name at
the end. Whereas, a hard-of-hearing
person or late-deafened person right away will ask you your name. And then they'll ask you anything about
yourself. So you'll notice those
different approaches. And this is diversity, and we need to understand that.
Learn
too about the resources out there; the services; the different
organizations. You meet someone who's
late deafened and they may know nothing about ALDA. Well, if I know about the organization, why
don't I pass that along to them? We need
to share these resources and share these opportunities so we can be supportive
of one another.
JONATHAN
O’DELL: We also have to be very observant of what's going on in terms of
technology, because a lot of the new technology is moving away from things that
are helpful to us, and moving more towards voice recognition, and that's
frightening. Because what's happening
now is we're going back to the bad old world where everything depends on voice
and listening, and I don't like that at all.
The more of this stuff that comes out the less we benefit. We have to start working together to put
pressure on people to do things the way we want them to be done, not an
afterthought or after-market approach, but before we see the technology hitting
the market. Technology can actually take away our access and we must be on
guard, together, against that. For example, television, in the beginning, the
regulation for digital television that was proposed, would have done away with
closed captioning. I don't call that
progress. You get a better picture but
have no more closed captioning. I don't
call that progress. But with pressure
committees met and found a solution.
RUTH
MOORE: We can advocate together, and for one another. Work together. Teamwork.
Think of each other.
Communication access is so critical and so important to all of us.
One
way to do this since there are really so many people who have hearing loss
would be through political action. But the problem is, so many people with a
hearing loss do not admit that they have a hearing loss. On average it takes
them about seven years before they even begin to think about asking for
help. So it takes a lot of education, as
we have found in Massachusetts, to get people to the point where they even
recognize their needs, let alone are able to advocate for themselves.
JONATHAN
O’DELL: I want to give you a last parting shot at how difficult it can be
sometimes to make everyone happy. The
commission has recently designed a poster to basically raise awareness of
hearing loss and we ran that poster very successfully in the MBTA, which is the
Massachusetts Bay Transit Authority in Boston.
It was very successful there, and we also recently handed out 60 or 70
of those posters through the Council Of Aging Directors. And I thought, this is
going great. And one of my Deaf colleagues who is culturally Deaf comes into
the office and says to me, "I don't like that." I’m like, "What
are you talking about?" And she said: “This poster is an insult to Deaf
people." I thought, “Here we go
again." The poster says, "Hearing loss shouldn't slow you down,
" and Deaf people don't see themselves as having a hearing loss. On the other hand, if you said deafness
doesn't slow you down, then hard of hearing people might find it
offensive. So it can seem like a no win kind
of situation, and we need to stop this nonsense.
Ruth Moore was born deaf and has a B.S. degree from Gallaudet
University in Washington, and a M.E.D. from Smith College in Northampton,
Massachusetts.
Jonathan
O’Dell lost his hearing from spinal meningitis at the age of nine and became
late deafened as an adult. He has a bachelors’
degree from Harvard University in Boston.
MCDHH.webmaster@state.ma.us
and their website URL: www.state.ma.us/mcdhh