A cochlear implant? It sounds pretty ‘bionic’, all right. The skull is opened, a hole is made in the cochlea, and the electrodes are inserted, winding round and round in the nautilus of the cochlea. Tiny little device, size of a quarter, implanted right inside of the ear… The implant does not interfere with sports, showering, or swimming, but unless you normally submerse and kick around $15,000 microprocessors, the processor might. This Walkman-like apparatus is connected by a wire to the implant site and can be worn wherever you find it convenient to secure such a device on your person, within the range of the wire, of course. Tucked into your Speedo perhaps, or the décolletage of your evening gown. But, with some tinkering and training, those signals can start to resemble sound perception. Hmm …
But
the implantee is deaf again during activities that
can’t be done while wired up to a body aid.
Furthermore, there might be some things one does that
could not be done after having the skull opened and shut.
It is not the hood of a car, after all. An implanted
friend finds he is unable to get medical certification to
pursue his sport in competition. He was not given this
information before the surgery. Nor information on the
other things one cannot do, the things that are on that
little wallet card of Don’ts.Many
of us who resist implants have good reasons. And we are
unnerved by cochlear implants advocated as the answer
rather than an option, or the best option rather than
something that is right for some and wrong for others.Adults seeking to be implanted usually
want hearing again, very badly. But what many of them get
from an implant is perception of sound. The hearing most
yearn for is not just the acoustical phenomenon, but the
entire lifestyle. They don’t want hearing, they want
to be hearing. These people want symphony, the charming
prattle of toddlers, whispered sweet nothings. They want
to pick up the telephone and be able to understand anyone
who calls them. Implantees may only get a perception of
speech rhythms that assists their lipreading, and an
ability to hear environmental sounds. That may be a bit
of a disappointment but still well worth it. Some get
nothing worth having. The manufacturers and professionals
do mention that not every case gets the best result.
There could not be a best if there was not also a worst.
But a candidate who wants an implant can be doubly-deaf
to this message. It is human nature to think we will
succeed when others fail. Why else do so many of us speed
but curse speeders as a menace on the road?
There
are a lot of happily-implanted people eager to tell of
their successes: hearing with their eyes closed, hearing
the phone, and—for some bizarre reason—hearing
crickets. (Is this insect fetish a requirement for
implantation?) I’ve even met people who were
delighted with their implants, but who—obvious to
me—couldn’t listen or lipread nearly as well as
they thought they could. There are also unhappy,
embarrassed, and impoverished people who experienced
surgical complications, or just did not get what they
expected. Were the expectations reasonable? In
pre-implantation psychological screening, it would be
difficult to do a fair screening if the psychologist
shared the Hearing culture’s horror at the thought
of deafness. A willingness to undertake any last-ditch
procedure would seem rational compared to a life sentence
of deafness, wouldn’t it?
Who
talks about their implants the most? The winners. Nobody
wants people to see their failures, least of all someone
who has voluntarily submitted to major surgery. Well, if
you don’t count Jenny Jones’s breasts and
Michael Jackson’s nose. Strangely, the preoperative
belief that one is certain to have success where others
may fail is transformed during successful surgery into
the belief that everyone else will have exactly the same
success. The greater the ‘miracle’, the more
enthusiastic the pitch.
Where
is the Devil’s Advocate? The Deaf community will
speak in favour of the implant-free lifestyle, but the
major motivation for most implant candidates is not to
end up like THEM.
With a progressive hearing loss,
for many years I heard enough to speak, lipread, and pass
for Hearing. But the more you seem to be hearing, the
more they expect you to hear all the time. With the
enhanced self-esteem I got from meeting other deaf
people, I began giving Hearing people a bit more of the
responsibility for communication. And most people have
been tremendously cooperative. I don’t aspire to a
five-figure bill for going back to the way it was. If I
got an implant, if it ever didn’t work I’d feel
defensive about the investment—like when your fancy
car needs a tow. It is indeed a Hearing world, but there
are plenty of deaf people to keep me supplied with
friends for a good long time. And as for business, well,
it’s a White world too, but I shudder to think of
taking a medical approach to give Black people more of an
even break. Maybe it is the environment that has to
accept diversity a little better, rather than
‘different’ people who have to change.
I
would hate to think that there are people who might get
the implant only because others make them feel deafness
is their problem, their defect. “Face it, our
Hearing family and friends are not going to learn to
sign,” people say. Why not? If we love them enough
to get implanted, why would they not love us enough to
sign or gesture? At least sign language classes are a
risk-free, fully reversible procedure.
If
a person wants to hear sounds, I am happy to see that
they have an implant they can choose. I don’t need
sound for communication now. I have a collection of
skills and options, including professional sign language
interpreters and real-time captioning. I have a social
circle that accepts deafness and can communicate with me.
I have to think that I became deaf as part of a Grand
Plan, and that is what I am meant to be. It has had its
difficulties but it has also brought my life some of its
greatest joys and successes.
After publicly asking implantees to cease and desist proselytizing in my direction, I was approached by one implantee who asserted that I had made an excellent point, but I really should consider an implant because I was an ideal candidate. You can make a person hear, it seems, but you can’t make them listen. How the hell does he know I would be a good candidate? Has he seen my audiogram? Does he know anything about my life? Or is it just that I am right-handed and about the right height? (n.b. I have no cricket fetish.) Perhaps he figured I looked intelligent, and any intelligent person would want to be just like him.
Generally, my implanted friends
with signing skills seem to be the most capable group of
implantees. The implant is a tool they added to their
communication skills, not the basket containing all of
the eggs. Perhaps this takes some of the stress off the
implant, which might make the rehabilitation easier. All
implant candidates should have the same advantage. Ask
them to take a term of lessons or tutored practice in a
sign system of their choice, with a loved one or close
supporter, before making the final decision on the
implant. ASL, signed English, home sign. A chance to
experience deafness as a not-entirely-impossible thing,
and a condition they can survive even if the implant is
not a success. This adjustment period also provides time
for introspection. Why do I want it? Why does my family
want me to have it? It could be a time to work through
any feelings of guilt for being a burden on the family
and sense of failure and defect. I don’t know if
those are good reasons to rush into surgery.
I
get uncomfortable with the sales pitches that suggest
that rushing into surgery is exactly the right thing to
do. An implantee writing in a service agency newsletter
advised deafened adults to be implanted as rapidly as
possible after deafness. The newsletter touted his health
care profession but his only qualification in CIs is as a
user. And, having had his own implant relatively quickly,
he has no idea how much better or worse his own results
would have been had he waited. One of the most
audiologically-successful implantees I know waited 20
years. He is also the least dependent on the implant. He
is also the least likely to advise candidates one way or
the other.
Some
implantees whose results exceeded expectations enthuse
about their successes and cannot imagine why I and others
would not hasten to be candidates. As if they cannot
believe we have comprehended them if we remain rooted to
the spot, cochleas au naturel. So they enthuse again. It
is somewhat human nature to think that when we are onto a
good thing, that others will demonstrate their
recognition of our good judgment by emulating us. If they
do not emulate us, then they obviously missed the point.
So, once more with feeling!
I
would rather you didn’t. I ‘heard’ you the
first time. I am just avoiding coming right out and
saying I am not interested because I don’t want you
to think I am condemning your decision for yourself.
I support informed choice for
everybody. I want the right to choose not to have an
implant to be as respected as the right to go for it. And
I oppose peer advising. My life, my work, my family and
friends, my state of mind are all as unique to me as the
kind of hearing loss and ear-anatomy I have. And peers
know nothing about any of those. Let’s all share who
we are and how we feel, but my tolerance stops when we
start to tell each other how they ought to be and feel.
But
sales pitches are more than just annoying. When people
are vulnerable about deafness, they are hypersensitive to
suggestions that someone can “make it go away”.
Every time an implantee oversells the procedure and a
candidate makes a premature decision, the chance is
increased that there will be another less-successful
implant. The procedure will not become extinct if
implantees don’t sell it. The proportion of
successful implants—implanting only the best
candidates with the most realistic expectations—will
be enhanced by honest sharing of experiences, even of the
small (or large) disappointments, and respecting
individual differences, and leaving the decision to the
candidate.
This article
originally appeared
with my permission in
CICI Contact
Summer 1993
