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It seems odd that people can blithely disregard laboratory results on various causes of cancer, with the smug and self-evident claim that rats are not the same as humans, yet when the hair cells of 3-day old rats regrow with overdoses of a vitamin, they want to know more about the miracle that can bring their hearing back.  Do I
jump up and down when I read the latest announcements of
medical research? Well, yes, but not for the reasons you
may think. There isn’t one of us who has not cursed
at some barrier in the hearing world and wished for just
15 minutes of hearing. But the argument against indulging
this wish with hopeful press releases about lizard
science is that we all have a life to live now. They say
AG Bell was trying to invent a hearing aid but bombed out
and ended up with that useless hunk of plastic called a
telephone. Maybe this research will produce
nothing more than speaking salamanders.Occasionally
I do indeed find deafness to be as inconvenient as the
next person does. I get a bit of fiendish satisfaction
demanding equal access and accommodations under the laws
of the land, but it would really be more profitable for
all concerned if I could switch my hearing back on when
necessary, and do things the “normal” way.
Deafness has been a pretty fundamental reckoning for me,
but I do not look back on hearing as the most meaningful
part of my life, nor do I really relate when others do.
So the desperation about finding The Cure perplexes me.
As does the insistence by some that this search should be
ALDA’s chief mission.It
seems some people think “accepting deafness” is
an editorial oxymoron at ALDA (or perhaps just an
editorial moron). This passion was expressed particularly
emphatically by one recent ALDA News correspondent,
who wrote: “[ALDA News declining to
publish a personal experience account advocating cochlear
implants declares] that the deaf should just accept their
deafness and lower economic status that comes with it. I
can no longer belong to your backwards organization. I
want my membership fee back because your newsletter does
not provide me with any useful news. It is just a group
of personal summaries of personal experiences and I
don’t give such ‘news’ a high priority in
my reading list. I think I will join an organization that
really tries to help deaf people, not just agree that
deafness is nice. I think your brains are in your toes.
You are a backwards, bossy, pushy person. Clean up your
act, lady!” We wonder what self-image motivates some
of us to insist that ALDA focus on these cures,
regardless of their irrelevance to large segments of the
ALDA population.I
would be comfortable placing a small wager to the effect
that there will not be a Cure that remedies all types of
hearing loss within my lifetime. The different ways we
all went about becoming deaf mean one man’s
“promise” is another man’s ho-hum. Just
look at all the unimpressed NF-2 (neurofibromatosis
type-2) folks who are sick to the gills with being urged
to get cochlear implants.Just
how much are you willing to give up to hear again? The
“price” does not need to be just money. Suppose
the research leads them to a rare orchid in the Brazilian
rainforest that we can toss in a salad and have cochlear
regeneration but which attacks the optic nerve? Would you
still pick it? Would you trade your ability to get out of
bed to be able to hear, or if it meant gaining so much
weight that only Dick Gregory or Richard Simmons could
rehabilitate you? Would you take The Cure if it made all
your hair fall out? If it reduced your life expectancy by
ten years? Suppose it required quite risky surgery and
there were very few successful cases before you?If we
say there might be a magic potion or gizmo someday, will
that deter you from taking some positive steps to accept
deafness as a part of yourself today? Will you keep
taking on the extra load of making sure your
‘defect’ does not intrude on the enjoyment that
you provide to other people?What
if you hold out great hopes for The Cure and then it
comes along and it is not what it promised to be? It will
not work on your type of loss, or will only provide a bit
of background noise? Will you be even more depressed than
if they had said today, “There is no cure. Forget
it. Live with it.”? What if you hold out hope for
The Cure and everybody knows it and they are hoping for
it too, because it would really be more convenient for
them if you hadn’t changed at all, and then The Cure
comes along and it looks pretty scary and you want to
back out… would you? I know people whose families
just could not learn to sign or speak clearly but nearly
tripped over each other in the race to help with the
phone call to the cochlear implant center. The
“supportive family” can communicate its wishes
in subtle ways. Or suppose everyone has all these big
hopes and you go for it, and you really can’t make
it work. But they all think you are fixed now, and lose
patience with dealing with it. You know, like “you
told us this would work, and we waited all this time, and
now look at you. It didn’t work.”Or
suppose all those dissected bird brains tell us nothing?
If we suppose there will never ever be a magic
potion or bionic gizmo, and you will be deaf forever,
would you look at your deafness differently today? Would
you learn sign language or look up the phone number of a
CART reporter and start using captioning at work, meet
some deaf people and realize they are just as nice to be
with as hearing people, ask to have your secretary
replaced with someone a bit more lipreadable, tell your
family you really would appreciate them repeating those
dinner table jokes until you get them because it really
does annoy you to be told “it didn’t matter, it
wasn’t important.” It is one thing to be
curious about a potential medical treatment for deafness,
but another to insist that only medical treatments and
not social treatment have any value.Our
curiosity about these promising treatments is tinged with
cynicism, skepticism, and realism. Much enthusiasm and
optimism in research is motivated by the need to release
the next phase of the grant money. We have seen over 200
years of the history of deaf people scarred by attempts
at a Cure, at times bordering on sadism when viewed
through the lens of time. We also see the hearts broken
when promises fade.We
would like to see research conducted with a respect for
the fragile self-esteem of people losing a vital and
comforting sense. We would like to see research justified
without stating that deafness is a grievous calamity and
an abomination. Hearing is about as useful as a sense can
be without being essential. A life without hearing is
still a worthy life, and we disagree that lower economic
status is an inevitable consequence of deafness.It
seems that to live a good, long life, you ought to be
eating low-fat high-fibre diets, avoiding smoking and
second-hand smoke, drinking plenty of water, getting
regular exercise and adequate sleep. If your lifestyle
has not changed to accommodate these things, because you
think that the laboratory findings are inconclusive, we
have nothing much to tell you about 3-day old rats and
the promise to make you hearing again.Let’s
play the What If game again. What if you actually can
hear perfectly again. Will you be entirely happy to leave
all your ALDA friends behind, go back to be among the
hearing people? Did deafness change only your ears? Some
people think it made our brains migrate down to our toes.
Many of us believe that deafness changed our hearts as
well, and for all the times we curse the inconvenience
and the barriers, we could never go back. |
This article previously appeared with my permission in The 1993 ALDA Reader ALDA:
Association of
Late-Deafened Adults look at the fake news clippings again |
| Contacting me Last revised: June 12, 2001 |
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