he can be like everyone else."
"We're trying the best we
can, dear," interjected Shirley, Tommy's
mother. "That's what we've been talking about
with all those doctors."
looking at Tommy, I said, "If God was the same as everyone else,
he wouldn't be God, now would
he?" A brilliant
intervention, I thought. I
wanted to introduce the concept of cultural heterogeneity.
he would," Tommy immediately retorted.
"He would be God
be the same as everyone else. Like
mom and dad; they can both hear but they're still different from each other, right?"
know that, dad. But
remember when mom got that new toaster oven?
She asked Aunt Doris how she liked hers before she bought one
for us. Remember?"
but what does -"
"It's easy, dad,"
Tommy interrupted. "If
God likes his cochlear implant, humans like me will probably like
it's good enough for God,
it's good enough for
you?" I mused.
Tommy replied. "Look what I drew!"
He proudly displayed a drawing he had made. It looked like Casper the Friendly Ghost with wires coming
out of his head. However,
it was none other than the Supreme Being with an implant!
Although Tommy put up a fuss every Sunday morning when it was
time to go to Church (Southern Baptist), God was an important part
of his life. An
endorsement from Aunt Doris would do for toaster ovens, but nothing
less than God's
endorsement would suffice for important decisions like getting an
implant. Only problem
was God's presentation of his
endorsement was unclear and was subject to debate. If only he would use
PowerPoint, I thought.
had incurred a profound hearing loss shortly after his sixth
birthday as a result of a rare kind of auto-immune deficiency. His parents were devastated.
They were an upper middle class, interracial couple (Leo was
African-American, Shirley was White) who worked hard to reap the
"American Dream." Their
dream did not include having a deaf child.
After undergoing extensive medical and audiological
evaluations, Tommy had recently been approved for cochlear
a well-established University Professor in Sociology, Leo had
recruited/coerced his grad students to collect relevant medical and
sociological articles from libraries and the Internet.
Shirley, a housewife, visited several clinics and consumer
groups and had been reading reams of testimonial reports from
implant users. We scheduled another meeting with just the two of them
- "adults only" - as it would not be helpful at this stage
for Tommy to hear what I sensed would be his parents'
ambivalence or fears. I
had an inkling of what was to come.
week later we adults met. "So
who wants to start and where?" came my typical open-ended
"I'll start," Leo
immediately announced. He
was obviously sitting on a lot of feelings and was eager to release
been going back and forth about the surgery ever since the doctors
told us a month ago that it was possible.
They talked about the benefits of cochlear implants: that Tommy
would have greater access to sounds and conversation; that he'll
have a richer life with expanded options; but that we shouldn't expect miracles or
for him to have completely normal hearing.
Their position makes sense.
But then I read about the position of the Deaf community.
They say that to be implanted is a cultural stigma and that we
would be trying to fix something that isn't
broken; that we should accept Tommy as Deaf.
Their position makes sense, too.
But if he'll
have a better life as -"
"Tommy's hearing disability is
not a difference,
not like being Black or White."
voice was soft and sweet but I wondered how long that would last.
you think Tommy will
have a better life with or without an implant?" I
that's just it, I don't know.
dad, I'll answer
>Yes, of course!' But that may be because I'm
too involved, too close. The
readings I've done as a
Sociologist [he produces a copy of Harlan Lane's
Mask of Benevolence] is compelling.
Would I have a better life as a White man? I don't
know. Would I have a
better life as a Latino? I
Would I have a better life as a piece of broccoli?
I don't know that
became philosophical and humorous, as if he was giving an oration to
his students. I bet he
was a good teacher.
"I'm glad you're not a piece of
broccoli, dear, although you should eat it more regularly,"
Shirley joked. We all
mother used to force all that green stuff on me," came my
contribution. But then
I realized that I had inadvertently been co-opted to distract Leo
from making his point which ran counter to Shirley.
To get him back on track, I asked him to say more.
responded immediately: "If I wasn't
Black, I wouldn't
have to fight discrimination. I
wouldn't have been called a
Nigger by other White kids throughout my childhood in an almost all
White neighborhood. I
wouldn't have been accused of
shoplifting more times than I care to remember. Part of me wishes I were White.
Black, and I'm
proud of being Black! I
wouldn't know me as
White." He paused,
apparently in search of words to describe his White "virtual
you see any advantages to being Black?" I asked.
of course I do!" came his immediate response. "It's
made me who I am. It's given me strength, a
backbone, the will to fight; it's
given me soul; it's
given me compassion; it's
given me a deep commitment to help change the world and rid it of
evil!" He ended
his oration by quoting W.E.B. DuBois, the famed Black activist in
the early 1900's. "I'll
never forget how DuBois described the
of Black people as
dogged determination to survive and subsist, the tenacious will to
persevere, persist, and maybe even prevail.'"
The words and soul of Leo and DuBois permeated the room.
strivings, however, are not the full story.
As Leo noted, a host of liabilities and challenges are also
part of the collective memory of the Black community.
In the words of Cornel West, a contemporary Black professor
and protege of DuBois, "These
>strivings' occur within the
whirlwind of white supremacy - that is, as responses to the vicious
attacks on black beauty, black intelligence, black moral character,
black capability, and black possibility.
This unrelenting assault on black humanity produced the
fundamental condition of black culture - that of black invisibility
and namelessness (Gates & West,1996).
Leo - as a Black man and sociologist - the spiritual strivings,
threatened invisibility and namelessness of the
Deaf community were inextricably involved in his struggle to
decide whether or not to implant his deaf son.
so for Shirley. "You
can quote DuBois, but I can quote some our great inventors, like
Alexander Graham Bell. If
he hadn't tried so hard to make a hearing aid for his deaf wife, he wouldn't have invented the telephone!
have been incredible advances in surgical techniques for the hearing
impaired, assistive listening devices, digital hearing aids, cochlear
and auditory brain
voice, no longer soft, revealed her strength and determination..
I want to do is give him a better chance to get the same benefits as
others who have normal hearing," she exclaimed.
"He can be proud of being deaf if he wants, but he doesn't have to be deprived
of important opportunities! He
can have the best of both worlds!
That's the difference
between you and him! You
can't make yourself white
and be proud of being black. Well
Tommy can. He's
never going to be completely hearing, even with a cochlear implant.
have a better chance to succeed in this racist world of ours.
all I want for him. Once
he's an adult, he'll make his own
gave an impressive rebuttal to her husband, even quoting a parent of
a child who received an implant at the age of three that she had
seen on the CBS television program, "60 minutes":
"All we have done is given Caitie a tool and an option.
She's experienced the
delights of our culture that are not open to someone who cannot
not a small thing, to hear the spoken word and to hear the sounds of
the world. And if
Caitie chooses at some time in her life that these gifts are no
longer pleasurable, she has the option to turn off the
implant." (quoted in Biderman, 1998).
good debate in the making, I thought.
Leo became quiet, but I could feel his wheels spinning.
Shirley had eloquently articulated one pole of his own
ambivalence. After a
long pause, Leo finally retorted: "You're
trying to correct something that God made."
always talk about your black Veil which separates you from the white
world," Shirley retorted without missing a beat. "Don't
you think a cochlear implant would remove Tommy's
Veil from the hearing world?
Don't you think
would want that?" Shirley
knew that the "Veil" metaphor was one that Leo knew too
well: a mask behind which one hides both from the world and from
oneself. Again, in the
words of Cornel West,
"The Negro is a sort of seventh son, born with a veil... which
yields him no true self-consciousness, but only lets him see himself
through the revelation of the other world."
It is a peculiar sensation, this double-consciousness, this
sense of always looking at one's
self through the eyes of others, of measuring one's soul by the tape of a
world that looks on in amused contempt and pity."
Leo became silent. Perhaps
he secretly agreed with Shirley and was playing devil's
advocate. Shirley, too,
seemed to be entrenched in her position in opposition to Leo. Both of them seemed somewhat one-dimensional and caricatured.
once came across a cartoon depicting a couple on an airplane.
One spouse asks the other, "Do you want to be scared on
this trip or should I?" Instead
of each person acknowledging their own ambivalence, they became
extremes - scared/not scared. They,
too, became one-dimensional and caricatured.
typically use so-called "projective identification" to
unconsciously "give" their split-off/unacknowledged
doubts/fears, etc. to the other to "hold."
In this manner, they do not consciously experience or portray
their ambivalence and doubts. Accordingly,
Shirley did not consciously doubt that the implant could be wrong
Leo took up that role. He
"held" her doubts for her.
Similarly, Shirley "held" Leo's positive views on
implants so he would be spared "owning" his own
found myself wondering about the part of Leo that, by his own
admission, wished he could become white.
Would he take a "veil-removing" pill which would
change the color of his skin?
what are you thinking?" I asked.
many of my black brothers try to be white by straightening their
hair even though it's
an excruciating and painful ordeal.
Tommy can try to be hearing by getting a cochlear implant,
but at what cost?. As
Shirley said, he'll never really be
hearing. Instead, he'll
show his self-hatred and shame about being deaf to himself and to
the world. I just don't know if it's worth it."
He looked down and sighed.
you support affirmative action?" Shirley asked somewhat
two had begun.
does that have to do with anything?" Leo exclaimed with sudden
annoyance. Now the
debate was becoming more like a marital fight.
action gives black people the opportunities they need and that they
have been deprived of," Shirley responded.
"It helps equalize the playing field. An implant will equalize the playing field for our son!"
"I'm all for equalizing
the playing field, but at what risk?
This operation terrifies me!
What if something goes wrong?
It's major surgery, for
well articulated fear struck a nerve in Shirley. "I'm
scared for that, too," she admitted, now in a softer, more
frail voice. "But
the doctors have assured us that there's
only minimal risk. He's done many of these
surgeries, all without any real side effects.
For God's sake, Leo, everything
comes with a risk. You know that!
But it's worth whatever risk
there is to give our son a better life!"
By the end of her reply, Shirley's
voice had regained its potency.
we needed to stop, midstream in their impressively delivered debate.
I was tempted to extend our meeting, but I was already late
for a treatment team meeting at Westboro State Hospital Deaf Unit
where I am a consultant. We
made another appointment for the following week.
half-hour later, I arrived at the Unit.
Leo would have been proud of its bi-lingual, bi-cultural
philosophy. The Deaf
and hearing staff have taken great pains to co-exist with each other
in a culturally affirmative manner.
No support of cochlear implants was likely to happen on this
team had already begun and the staff were discussing discharge plans
for a patient. Per their
communication policy for many formal meetings, all staff were using
their "natural" languages with the assistance of an
interpreter: Deaf staff were using ASL while hearing staff voiced
don't wanna split hairs over
whether he's discharged on Wednesday or
Thursday," Neil (hearing) orally thought out loud.
Then he quickly and apologetically corrected his faux pas:
"I mean he can be discharged on either of those days, it doesn't matter."
A quick save. The deaf unit had been having heated discussions
about the casual use of English idioms that are not easily
translated, thereby excluding deaf people whether or not a skilled
felt ping of annoyance in the pit of my stomach. It could be indigestion, I first thought, but why would it
start at exactly the same time that Neil corrected his oppressive
hearing-based, audist, English idiom faux pas?
At least now the differential diagnosis could now be made: I
was impatient; it wasn't something I ate.
is stupid!" I screamed silently in my head. (As a hearing
person, I was reluctant to scream that objection publicly).
"After all," I thought, "the Deaf Unit decried
that us hearies would use our voices during clinical team meetings
while the ASL interpreter signs.
"It's your natural
language," they said.
if it's my natural language,
why can't we use our natural
idioms? There's a skilled ASL
interpreter in that meeting who could
>splitting hairs' idiom."
stop being so bloody concrete.
As a psychologist, what do you think is really going
reflected on the consciousness-raising about how hearing people use
language and the impossible expectations put on the interpreters to
take care of everything. The
Unit posited an essential cross cultural axiom: namely, that
interpreters do not solve the communication barriers that occur when
two groups have such unequal power and share such different
languages and frames of reference.
also recalled several discussions I had with Marie Jean Philip, the
noted Deaf community leader and teacher who recently passed away.
I can still see her immediate, erudite responses to complex
issues, signed in beautiful ASL. She would have supported the Unit's
policy of going out of their way to equalize the playing field.
would examine the reasons for my annoyance later, as I couldn't help but think of Leo
and Shirley. After all,
cochlear implants is a high tech way of helping to ensure increased
accessibility and also of equalizing the playing field.
However, by virtue of my having been trained by culturally
Deaf persons and culturally-sensitive hearing persons, I am
uncomfortable with the notion of cochlear implants, except for
adults who are able to make their own informed decisions.
I often recall many of my teachers who categorize
implantation with the "evils" of oralism, Alexander Graham
sterilization of deaf people, and with other acts of oppression
which have been levied by hearing persons on to deaf persons.
there are many people with hearing losses who are grateful for
cochlear implants," I responded to myself.
they're not culturally Deaf
I'm entering my favorite Sushi bar, looking forward to some Tekka Makki and
their wonderful green tea. Then
I notice Tommy who is sitting with a bunch of his friends.
They are Marie Philip, Alexander Graham Bell, W.E. DuBois,
West, an ENT named Dr. Implant, Shirley and Leo, and a few other
people I can't make out.
notices me and yells, "Hey, Dr. Harvey.
Come join us for an stimulating cross-cultural discourse on
balancing possible ethnocentric factors inherent in cochlear
implantation verses the utilitarian benefits of such bio-medical
comes my reply. I sit
down near the shrimp tempera.
"Cochlear implants can help deaf children learn spoken
language and overcome the
occupational and social barriers that they often face."
DuBois: "If only you could understand how that's
like white people trying to make black folk white. It's
emphatically nods her head.
Bill! Ethics have
nothing to do with it. As
a physician, my responsibility is to alleviate human suffering, to
improve the lives of the patients who entrust their health to me, to
explore new medical vistas, to -"
Dr. Implant: "Hey, no fair! You died in 1906. They
didn't even have TVs back
then, never mind cochlear implants!"
DuBois: "My point is that doing those surgeries may financially
benefit your life, but at whose expense?"
Dr. Implant: "What are you talking about?"
"You tell him, Cornel." [to Cornel West]
"They're your words, not
DuBois: "Yeah, I know. But
I want to see if you've read my books
carefully enough." (smile)
Cornel: "It seems to me that, as an oppressed minority like the
Black community, cochlear implants are an assault to Deaf culture. The black and white worlds - and I'm
assuming this is also true for the Deaf and hearing worlds - are
divided by a "Veil" that requires role-playing and
mask-wearing rather than genuine human interaction. Essentially, a cochlear implant is a high tech Veil - a high
tech mask to make, as DuBois said, deaf folk look more hearing."
DuBois: "Very good, son. You've
read my books well."
DuBois: "You're welcome."
[with more than a hint of sarcasm] "Oh, how touching. Why
two men hug
and beat drums. Mr. Bell,
just going to sit here and listen to this hogwash?"
Alex: "Absolutely not, Shirley. [looks sternly at DuBois]
Bill, what you don't realize is that there
are many deaf and hearing- impaired people who hate deafness with a
passion and want more than anything else to be more hearing. They welcome the cochlear implant not as a Veil or a mask,
but as a way to learn to listen, to reap the benefits of the world
around them, to learn speech and language. It's a technological
Aunt Doris: "Like toaster ovens."
Dr. Implant: "They're
much more advanced than even toaster ovens." [proceeds to
lecture Aunt Doris about the components of an implant.]
God: "Excuse me for barging in like this, but I'm
looking for a new toaster oven cuz mine broke. I miss it having toast in the morning."
Aunt Doris: "Black and Decker makes the best one with great
features. It has automatic cleaning ..." [proceeds to lecture God
about the components of a toaster oven.]
Alex: "I didn't know they had those
God: "In heaven, we get extended warranties on all products. And Mike, by the way - per your comment earlier in this
chapter - I'm the one who helped
Bill invent PowerPoint, just FYI."
Mike: "Oh God, I'm sorry. I'll
credit you next time."
Tommy: "It's Microsoft windows
presentation software which requires at least 8 MG of RAM and
preferably a Pentium processor."
Dr. Implant: "It's
another advanced technology that improves the quality of peoples'
lives. I'm sure you feel that's
Cornel: "You don't have to be sarcastic,
one thing to help people become more of who they are or could be; but
it's another thing to
teach people that who they are - black, deaf, etc. - isn't
good enough and that they have to put on a mask to conform."
Marie: "I agree with Cornel. And doctor, you know as well as I do that there's
no scientific evidence that children with implants will be able to
understand spoken conversation. There's no good research. Most of the so-called
>success stories' are from a small
percentage of children who do well and are paraded - much like in the
early oral, speech-training days - for all to see.
the tendency to forbid sign language during the rigorous
post-implantation training period strands children in a no-man’s
land - still too hard-of-hearing to join in conversations with hearing
people but unable to communicate with their deaf peers.
You pay a big penalty for delaying language acquisition.
In addition, you also ostracize them from the Deaf community and
implants for deaf children are unethical!"
Shirley scowls and
makes eye contact with Dr. Implant and Alex who are shaking their
heads. Aunt Doris and
God look confused.
Tommy: [to God] "Do
you have a cochlear implant?"
God: "What do you
think?" came God's knee-jerk response. A well-known face-saving device among gods when they don't
know the answer.
doesn't need an implant. But for deaf people, implants help them become more of who
they are or could be! They're
able to learn English better, to write better, to know the meanings
of idioms like
>splitting hairs,' to be more
Cornel: "I mean no disrespect to the proponents of cochlear
implants and for that matter, toaster ovens (looks at Aunt Doris and
God). Black people,
like Deaf people, have been taught that they will not succeed in
American society if they are fully and freely themselves. This suppression of black rage - the reducing "the
boiling to a simmer" - tends to reduce the tragic to the
pathetic. After playing
the role and wearing the mask in the white world, one may accept the
white world's view of one's self. And as I said before, a cochlear implant is a fancy mask for
Deaf people to fit into the hearing world; it prevents them from
being fully and freely themselves."
Harlan: "I agree. Too
often, help from hearing people, including the good doctor [looks at
Dr. Implant], is given with a mask of benevolence."
Leo: "Oh Harlan! I
was hoping you'd come."
joy!" Shirley sighed.
Harlan: "I would have come sooner, but the traffic from NU
[Northeastern University] was terrible."
Tommy: "When the third tunnel is finished, it should ease the
traffic congestion by a factor of 28%."
Harlan: "I hope so. Let
me read to you a statement that was issued by the Canadian Deaf
Deaf community views the use of surgery which prevents a child from
developing within the [Deaf] cultural minority to be a form of
genocide prohibited by the United Nations Treaty on Genocide. Cochlear implants on young healthy deaf children is a form of
communication, emotional, and mental abuse.'"
(Canadian Association of the Deaf, 1994).
Shirley: "Genocide! Are you nuts!! I don't
know whether to laugh or cry at such a crazy, idiotic and pathetic
view. Giving Tommy a
gift of having every possible chance to succeed is genocide? The Deaf community should get its head examined!"
Toni: You know, the genocide idea isn't
as idiotic as you may think. [Toni Morrison looks askance at
Shirley, Alex and Dr. Implant]. In one of my books, Beloved,
I tell the story of a black mother who kills her daughter because
she loved her so! There's
a kind of
>dirtying-process' that white people do
to black people, and that hearing people do to deaf people. That mother killing her daughter was her attempt to out-hurt
the hurter, to resist the
process.' A cochlear implant isn't only a mask; it's both an existential
murder weapon - a principle component of the
- which is used by hearing people to kill deaf people."
can't believe all this! (By this time, Shirley is beside herself). Dirtying process! Genocide! Killing deaf people! I'm simply trying to help
Tommy - "
Leo: "Calm down, dear. Have
some more sushi."
can take that Sushi and ... I'm not going to sit here
an listen to these idiots accuse me of abusing and killing my son. I don't
have to apologize for being hearing and I certainly don't have to apologize for
helping Tommy function in the hearing world!"
Alex: "The Deaf community's
view is absurd at best. I
can only understand it one aspect. Deaf culture represents one possible adaptation to deafness. Cochlear implants are another possible adaptation. Deaf people should be able to freely choose the kind of
adaptation they want to make, whether it be to get a cochlear
implant or join the Deaf culture. And parents of deaf children have a right, and an obligation, to choose what kind of adaptation they are prepared
to support on behalf of their children."
Dr. Implant: "You're
absolutely right, Alex! The
rights of parents are of the utmost importance when the medical
profession discusses what's best for their
parents know that a cochlear implant will help their child to
participate more fully in their family life and their community. It will enable parents to give more of themselves to their
child. All parents have the right to want their child to be an
extension - a reflection - of the good parts of themselves. After all, that's
what being a competent parent is all about!"
Marie: "Wait a minute, doc, do you truly believe that all
parents have the right to decide what is best for their child?"
Dr. Implant: "Why, of course! We
in the medical profession firmly posit that parents not only have
the right but have the obligation to make medical decisions for their children."
Marie: "Okay, extending your logic then, deaf parents of
hearing children have the right to come to you and request that you
make their children deaf by removing their cochleas. Isn't that
correct? It must be if
you propose that parent have the right to decide these matters. These parents would be fully informed; and, as Deaf parents,
they - as you just said - are naturally interested in their children
participating more fully in their family life and community. In your own words, "Okay, extending your logic then, deaf parents of
hearing children have the right to come to you and request that you
make their children deaf by removing their cochleas. Isn't that
correct? It must be if
you propose that parent have the right to decide these matters. These parents would be fully informed; and, as Deaf parents,
they - as you just said - are naturally interested in their children
participating more fully in their family life and community. In your own words,
have the right to want their child to be an extension - a reflection
- of the good parts of themselves.'"
Dr. Implant: "That's
absurd! That means I
should take out the eyes of sighted children born to blind parents,
Marie: "It depends on your bias. Eight-year old Tommy over here is bi-racial, having a black
father and white mother. If
it were medically possible, would you consent to Leo and Shirley
requesting you to make him all white or all Black?"
Dr. Implant: [stuttering while his face turns red] "Now, wait a
minute young lady. Deafness
is a medical problem that ought to be cured. It's
not like being Black or White! If a device were invented that could help visually-impaired
children see even a little bit more, who wouldn't
want one for their child?"
Alex: "I agree!"
Marie: "Being Deaf isn't a disability. Deaf people don't need to be fixed! Cochlear implants are dangerous and experimental!" Harlan nods his head in agreement.
Mike "I must say that we hearing people need to accommodate
and be mindful of cross-cultural ethics. They're vital to -"
Tommy: "Don't be so self-righteous,
Mike! Why did you react
with acerbity at the hospital clinical meeting when Neil corrected
himself for using an English idiom?"
Mike: "What does acerbity mean?"
Tommy: "It means with acrimony, tartness, anger, being pissed
off. Like how I feel when
my mommy makes me go to bed early."
Mike: "I see. Hmm,
know." [My voice softens]. "I
pride myself for my cross cultural sensitivity; but admittedly, my
reaction at the Unit wasn't
exactly sensitive. [thinks for a moment] Maybe it has to do with my
that by simply including a skilled interpreter - a so-called
accommodation' - fairness and
accessibility will automatically be taken care of, without my
constantly having to expend the effort."
Tommy: "Uh, uh, so you have feelings about being
"Uh, uh, so you have feelings about being
Mike: "Well, yes and no. I
don't like to admit it. But maybe I do, at least on a bad day."
Tommy: "And if we deaf folk undergo neurosurgery for implants,
you hearing people might be put out less. We're
getting treated in order to ameliorate the discomfort of you hearing
people. Disabled people
put a blemish on society, so the solution is to mask the
Mike: "You'll understand it more
when you grow up."
Tommy: "That's a non sequitur and
that means evasive."
Mike: "I know that!" [a lie, but I'm
feeling competitive with this 8 year old Einstein]. "But I don't totally feel put
a big part of me that's
more than willing to accommodate. Like everybody else, I have a dark side."
Tommy: "Mike, I believe you're getting defensive. This is basic psychology of hearing people."
Mike: "I'm not defensive!"
I respond defensively. "Why
don't you go back to
reading Dr. Seuss?"
Tommy: "You should be aware of your dark side without
not there; and, naturally, try to keep it in check. That's
the fine print in "Green Eggs and Ham." [laughter]
Mike: "But I don't like my dark side
in a house.
I don't like it
with a mouse.
I don't like it
here or there.
I don't like it
I don't like my evil side.
I don't like it, plain or
Tommy: "Don't worry, doc. Even I have a dark side. So does Dr. Seuss. We all do."
Shirley: "That's right, dear. And Deaf people have dark sides, too. For one thing, they're overly-critical. I'm
sick and tired of the Deaf community thinking they know all about
raising deaf kids. It's
not easy for parents to make these decisions but it's easy for deafies to
criticize us! Among other
things, they should learn some manners!"
People across the
restaurant are looking in our direction. The manager is walking toward our table. And then the Westboro Deaf Unit staff meeting ends. Daydream finish.
week later. Leo and Shirley
appeared on time for their appointment and claimed their respective
places in my office. Their
seating arrangement hadn't changed. However, this time Shirley elected to begin: "So Mike,
what's your opinion about
Tommy getting a cochlear implant?"
I was tempted to evade
her question, as I had done with Tommy's
God question. But it
would have been cowardice and clinically irresponsible. It was a fair question and merited an honest response. Accordingly, I summarized the anti-implant and pro-implant
positions as were espoused in my daydream at the team meeting. I attempted to give a balanced presentation.
"So what do you
think?" Leo persisted. He
was not about to let me off the hook.
implants for kids scare me. The
research documenting their effectiveness isn't
in yet and there are risks. So
I think the jury is still out, at least in my view. But one thing I'm
sure of: you need to have
and understand all the relevant information. And that's
easier said than done."
My goal was to ensure
that both Leo and Shirley give informed
consent if they decide to go ahead with Tommy's
implantation. As a
start, they had already indicated their thorough understanding of
the medical risks. But
it was unclear whether their expectations were realistic. What exactly did Shirley mean when she said "I know
Tommy's never going to be
completely hearing even with a cochlear implant."? Anecdotal reports and advertisements are often misleading. For example, the headline of one article in a prominent
newspaper was "Implant
Helps Man Hear Again." The implication was that the man could function as a hearing
person. A brochure for
a 22-channel implant system touted a long list of benefits:
"Many children can
distinguish among different speech patterns"; "after
training and experience with the device, many children demonstrate
improvements with speech;" and that "The most significant
benefits noted by respondents ... were one-on-one communication,
feelings of safety, reduced stress level, and ability to
socialize." (Cochlear Corp)
advertisements purposely leave vague is whether one would be able to detect or understand speech
and under what real-world
conditions. Tests of
speech discrimination are often conducted in laboratory settings
under optimal acoustic conditions and are limited to multiple choice
word lists. (Pollard, 1998). As
Psychologist Robert Pollard noted,
misunderstandings [overrating the effectiveness of cochlear
implants] can result in overly optimistic expectations. Parents reading an implant brochure touting huge increases in
hearing may not realize the difference between
>hearing' as sound awareness and
>hearing' as the ability to
understand conversations. When
they see a child talking on the telephone on a brochure's
cover, they may immediately assume that their child will enjoy the
same outcome." (Clay, 1997).
Thus, in conducting
psychological evaluations for potential implant users, Pollard gives
his approval only to adults or parents who can demonstrate full
understanding of implants' limitations and the
substantial variability of their effectiveness. (Clay, 1997).
After several meetings
with the audiologist and surgeon, both Leo and Shirley appeared to
understand the limitations of an implant for Tommy. They agreed that, while it would help him detect sounds and
improve his speech discrimination somewhat, he would not understand
individual and particularly group conversations as a hearing person
would. And they
acknowledged that the effectiveness of an implant for Tommy could
not be predicted with a high degree of certainty.
There was one vital
remaining component of their informed consent, however. With deliberate emphasis, I said to Leo and Shirley, "In
my strong opinion, you shouldn't
make a decision until you can clearly envision the no-treatment
"What do you
mean?" they asked in unison.
"I mean that you
recognize what possibilities there would be for Tommy if he doesn't receive an implant; whether you envision him as being able to
become a happy, fulfilled contributing member of society as
a non-implanted Deaf person."
Pollard refers to this
component as "phenomenological informed consent." In his words, this is "the candidate's or family's understanding of what
life with hearing loss is really like for most people, especially
those who make satisfactory adjustments to deafness without
implants. Parents need
to have a realistic appraisal of what the
option means: namely, what normal deaf life without implants is
like." (Clay, 1997).
Thus, the next phase of
my work with Leo and Shirley would be to become a guide or a sort-of
encouraged them to meet local non-implanted leaders from the
culturally-Deaf and oral-deaf communities as well as various
non-implanted deaf professionals. They would bring Tommy to some of these meetings and to many
Deaf community gatherings. I
suggested that they visit a bi-lingual, bi-cultural Deaf school,
such as the Learning Center for Deaf Children. I also gave them a reading and list and videotaped
presentations by accomplished deaf adults who have not received
implants. My goal was
to drive home the point that Deaf persons do not need cochlear implants to be successful.
Several months later,
Tommy and his parents came for their last meeting. Leo and Shirley announced that they had dutifully done their
homework and, in fact, had enjoyed it. They met some "intriguing, bright, capable deaf
adults." And Tommy
talked about the "cool" ASL fairy tale videotapes that he
saw and a recent performance by National Theater of the Deaf. Both he and his parents reported that they were enthusiastic
about learning to sign, regardless of whether Tommy got an
positions hadn't swayed significantly. Tommy couldn't
wait to have "bionic ears," Leo was leaning slightly
toward the no-implant option, and Shirley remained steadfast in her
wish to "give our son every possible chance to be happy and
successful." But I
was very pleased to see that both of them had become able to truly
give their informed consent to whatever option they would chose.
We bid each other a
fond goodbye. And on
the way out, Tommy gave me another drawing of an implanted Casper.
Several months ago, I
got a card from the proud family. They had decided to go ahead with the implantation and it had
gone well. Tommy was
applauded by everyone for his motivation with post-implant aural
rehabilitation services. And
the family was taking sign language classes. They remained "cautiously optimistic."
I reflect on my struggle to clarify my thoughts, feelings and biases
about cochlear implantation - as therapists put it, "lack of
neutrality" - I often go back to and continue my daydream. Sometimes, I imagine 8-year old Tommy looking at me straight
in the eyes and zinging me with "Frankly, Mike, you seemed at
times too judgmental and even unprofessional at the Sushi bar! How do you justify that?"
There is a true story
that took place in a well-known trauma clinic. Every week, the professional staff "vent" for one
hour, behind closed doors and only among themselves. One day, they imagined that one particular man - who had
raped his two year old daughter - was standing in front of them
while they shot obscenities at him.
An extreme example to
be sure. Their
behavior, too, may be construed as unprofessional, judgmental and
non-genuine. (They didn't
even do their deeds in a daydream). However, that is very much not the case. These clinicians correctly acknowledged that they must first
discharge their human reactions in order to then examine them and
then to think, feel and act professionally with real clients. After the staff completed their fantasized
abuse of the man, they could look at his pain and humanity, feel
compassion and then were able to appropriately help him.
Our first task is to
acknowledge our "un-politically" correct feelings; and our
next task is to get past them. If therapists do not first acknowledge
and then process unprofessional, judgmental and non-genuine
feelings, we will almost inevitably act unprofessionally with
client(s). This is
particularly important with cross cultural work, e.g., between
hearing therapists and deaf clients.
I explain this
principle to Tommy. Then
our dialog continues.
Tommy: "Mike, there's something else I've been wanting to ask
Mike: "Go ahead," I respond, trying not to be
Tommy: "Okay, I understand that you don't
have to be unbiased during daydreams. But were you unbiased while you were helping my parents
decide whether or not to get me a cochlear implant?
Mike: "I tried to be, as much as possible."
Tommy: "In other words, you were not
Mike: "Let me say it more precisely. I tried - and I think largely succeeded - in not allowing my
bias to unduly impose with treatment. Knowledge of oneself is so
important when doing cross cultural therapy, or any kind of therapy
for that matter. I have
humbly learned that I have inevitable biases as a Hearing, White,
Middle Class, Middle Aged, Nongay, Jewish, Male (Harvey, 1993). One cannot not have biases. One cannot not be oppressive sometimes, as you correctly
pointed out to me earlier. The
trick is awareness
parents, I had to own my bias and I put it
the table.' Hiding behind reflective listening or evasion would have been
dishonest. My primary
task, however, was to be open to them choosing an option for you
that is dystonic to Deaf culture. That's my bias. But I knew you wanted an implant. And ultimately both of your parents agreed. And to be honest, I, too, have seen positive results with
implants, leaving a subset of both children and parents nothing but
thrilled and grateful.
"But the results
are quite variable. And
to take it a step further, I can't
help but be scared that someday humankind will have the capability
of eliminating deafness and a host of other differences which
society deems undesirable, of selective breeding and of cloning
>desired traits'. Where will it all stop? It gives me the heebee geebees."
Tommy: "What's heebee geebees
Tommy: "Oh, thanks. So
how did you keep your bias from polluting treatment? And don't tell me,
>You'll understand when you're older'."
Mike: "I know better than that now. Well, I had to keep reminding myself that it wasn't
my job to make the decision for you and your parents; only to make
sure they understood all the relevant information so they could make
a competent, well-informed choice, whatever it may be. This meant them having a thorough understanding of the
medical risks; of the limits and uncertainties of any benefits; and
of the capabilities of non-implanted deaf people.
Tommy: "Even though you had a strong bias?"
Mike: "Absolutely. But,
again to be frank, my biases don't seem so set in stone
anymore. I used to be
much more sure of right/wrong issues when I was younger. Now I find myself not knowing as much as I used to.
Tommy: "Could it be Pre-senile dementia? Alzheimer's? Clinical Depression? Dissociative
Identity Disorder? Factitious
Disorder? Or is it
simply a case of you being wishy-washy?"
Tommy. And I’m
sorry to have to say this to you, but you will
understand it when you get older. While at one time, things were black and white, now they come
in many shades of gray.
the one hand, it seems self-evident that parents have the right to
best for their children.
But what about abusive parents?
In that case, our laws protect the rights of those children
Okay so far.
But how do we define abuse?
Excessive hitting or food deprivation are relatively easy
What about the balancing act that parents do between
imparting their own values to their kids - molding them in their own
image - and acknowledging and nurturing their kids’
individuality and differentness?
not enough, what’s
and your parents agreed to impose their hearing values and help make
you less >hearing-impaired’
via implantation. But they could have opted to helped you relish your
differentness as a deaf person. Did they do the "right" thing? Again, suddenly things aren’t
so clear anymore.
the last several years, I’ve
met many implanted deaf adults and deaf adolescents who are
devastated by failed expectations, medical problems arising from the
surgery and ostracism from the Deaf community.
On the other hand - as I just mentioned - I’ve
met many others view their implants as your Aunt Doris views her new
They view implants as a gift from God!
They view it as a way par excel lance of
the playing field,’
much like the deaf unit avoiding hearing-based idioms.
I still have my own opinion, but I don’t
take it as written in stone the way I used to.
Thankfully, I don’t
have to make that decision for my children; other parents do."
reminding me of an old Bob Dylan song, "My Back Pages,"
when he sings, >Lies
that life is black and white spoke from my skull, good and bad I
defined these terms, quite clear no doubt somehow, oh I was so
much older then - I’m
so much younger now.’"
was before you were born!"
I know a lot about Dylan but not about everything.
So maybe this is a good time for me to ask you
again: Does God Have a Cochlear Implant?"
do I know!
Ask your Aunt Doris."
Biderman, B. (1998). Wired for sound: a journey into hearing. Toronto, CA: Trifolium Books Inc. "60 minutes," CBS Television News, 11/8/92.
Biderman, B. (1998). Wired for sound: a journey into hearing. Toronto, CA: Trifolium Books Inc.
Canadian Association of
the Deaf, Press Release, 1/25/94.
Clay, R. (1997). Do hearing devices impair deaf children? American Psychological Association. 28(7).
Cochlear Corporation. Issues and answers: the nucleus 22 channel cochlear implant
Gates, H. L. &
West, C. (1996). The
Future of the Race. New
York: Vintage Books.
Harvey, M.A. (1993). Cross cultural psychotherapy with deaf persons: a hearing, white, middle class, middle aged, non-gay, Jewish,
of the American Deafness and Rehabilitation Association, 26(4),
Pollard, R. Q. (1998).