"Does God Have a Cochlear Implant?"  

(to be published in Journal of Deaf Studies and Deaf Education)

Michael A. Harvey, Ph.D., A.B.P.P. 

    Abstract

This article describes some psychological and ethical considerations when providing family therapy for parents who are considering cochlear implantation for their deaf/hard-of-hearing child.  Common couples' dynamics, multi-level criteria of informed consent, therapist bias and intervention strategies are illustrated.  The clinical vignette of 8-year old Tommy and his family is largely factual with enough changes to disguise the participants' identities.  I took more creative liberties narrating my daydream in order to best illustrate the relevant impacts of the pathological and culturally affirmative models.  


"Does God Have a Cochlear Implant?"
Michael A. Harvey, Ph.D., A.B.P.P.

 

"What do you think?" came my knee-jerk response.  A well-known face-saving device among therapists when we don't know the answer. 

"I don't think so," replied 8 year old Tommy.  "God doesn't need a cochlear implant because he's not deaf." 

"How do you know that?  Suppose God is deaf?" I asked. 

"Well, he could make himself hearing anytime he wants without getting an implant," Tommy responded confidently. 

"And why would he wanna do that?"  (Admittedly on a defensive note, let me beg the often-cited debate of whether God is a "he," "she," "it," etc.  Here, I was simply matching Tommy   Here, I was simply matching Tommy's masculine gender assignment.)

"So 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."  

Still 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. 

"Yes, he would," Tommy immediately retorted.  "He would be God and be the same as everyone else.  Like mom and dad; they can both hear but they're still different from each other, right?"

"I 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?" 

"Yes, but what does -" 

"It's easy, dad," Tommy interrupted.  "If God likes his cochlear implant, humans like me will probably like it, too." 

"If it's good enough for God, it's good enough for you?" I mused. 

"Yeah," 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. 

Tommy 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 implantation surgery.    

As 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.  

A week later we adults met.  "So who wants to start and where?" came my typical open-ended beginning.

"I'll start," Leo immediately announced.  He was obviously sitting on a lot of feelings and was eager to release them.  "I've 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, honey.  It's not like being Black or White."  Shirley's voice was soft and sweet but I wondered how long that would last. 

"Do you think Tommy will have a better life with or without an implant?" I asked Leo.

Well, that's just it, I don't know.  As Tommy's 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 don't know.  Would I have a better life as a piece of broccoli?  I don't know that either."  Leo 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 laughed.   

"My 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.  

He 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.  But I'm 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 reality."  

"Do you see any advantages to being Black?" I asked. 

"Yeah, 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 >spiritual strivings' of Black people as >the 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. 

Positive 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).

For 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.   

Not 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!  There have been incredible advances in surgical techniques for the hearing impaired, assistive listening devices, digital hearing aids, cochlear and auditory brain
stem implants."  Her voice, no longer soft, revealed her strength and determination.. 

"All 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.  But he'll have a better chance to succeed in this racist world of ours.  That's all I want for him.  Once he's an adult, he'll make his own choice!" 

She 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 hear.  That's 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). 

A 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."  

"You 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 God 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."   

Again 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.

I 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.   

Couples 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 precisely because 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 ambivalence.   

I 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?  

"Leo, what are you thinking?" I asked. 

"That 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. 

"Do you support affirmative action?" Shirley asked somewhat provocatively.  Round two had begun.  

"What does that have to do with anything?" Leo exclaimed with sudden annoyance.  Now the debate was becoming more like a marital fight. 

"Affirmative 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 God's sake!"  

This time, Leo's 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.  

Unfortunately, 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.                                                                           

A 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 turf.  

Treatment 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 spoken English.  

"I 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

I 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.  

"This 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.   

"Well, 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 >de-idiomize' Neil's >splitting hairs' idiom." 

"Mike, stop being so bloody concrete.  As a psychologist, what do you think is really going on?" 

I 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.  

I 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.  

I 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 Bell's proposed sterilization of deaf people, and with other acts of oppression which have been levied by hearing persons on to deaf persons.  

"Yet there are many people with hearing losses who are grateful for cochlear implants," I responded to myself. 

"But they're not culturally Deaf persons." 

"But who decides?" 

 

A daydream 

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,

Cornel West, an ENT named Dr. Implant, Shirley and Leo, and a few other people I can't make out. 

Tommy 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 technological advances." 

"Neat," comes my reply.  I sit down near the shrimp tempera. 

Dr. Implant:              "Cochlear implants can help deaf children learn spoken language and overcome the
 educational, 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 unethical."  Marie emphatically nods her head. 

Dr. Implant:             "Oh, C'mon, 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 -" 

DuBois:                         

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?"    

DuBois:                      "You tell him, Cornel." [to Cornel West]  

Cornel:                       "They're your words, not mine."

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." 

Cornel:                     "Thanks."

DuBois:                    "You're welcome." 

Shirley:                      [with more than a hint of sarcasm] "Oh, how touching.  Why  don'                                             you  two men hug  each other and beat drums.  Mr. Bell, are you 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 godsend!" 

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 up there." 

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." 

DuBois:                      "What's PowerPoint?" 

Tommy:                      "It's Microsoft windows presentation software which requires at least 8 MG of RAM and preferably a Pentium processor." 

DuBois:                        "I see."

Dr. Implant:                "It's another advanced technology that improves the quality of peoples' lives.  I'm        sure you feel that's oppressive, too!" 

Cornel:                        "You don't have to be sarcastic, doc.  It's 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. 

"And the tendency to forbid sign language during the rigorous post-implantation training period strands children in a no-mans 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 culture. 


Cochlear 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. 

Shirley:                     "God 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 successful..." 

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." 

Shirley:                      "Oh, 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 Association: >The 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 >dirtying" process.'  A cochlear implant isn't only a mask; it's both an existential murder weapon - a principle component of the >dirtying" process' - which is used by hearing people to kill deaf people." 

Shirley:                      "I 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." 

Shirley:                     "You 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 children.  Informed 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, >They 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, right?" 

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, I don't 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 >delusional fantasy' that by simply including a skilled interpreter - a so-called >reasonable 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 >put out'?"  

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 disability." 

Mike:                        "You'll understand it more when you grow up." 

Tommy:                     "That's a non sequitur and you're being circumlocutious.  FYI, 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 out.  There's 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 pretending it's 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

anywhere.

I don't like my evil side.

I don't like it, plain or dyed."   

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. 

A 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. 

"Personally, 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)   

What such 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, 

"Such 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 option." 

"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 >no treatment' 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 matchmaker.  I 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 implant. 

Their respective 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." 

When 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 you."   

Mike:                           "Go ahead," I respond, trying not to be defensive. 

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 unbiased." 

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 and management. 

"With your parents, I had to own my bias and I put it >on 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 so-called >desired traits'.  Where will it all stop?  It gives me the heebee geebees." 

Tommy:                     "What's heebee geebees mean?" 

Mike:                         "Pusillanimous." 

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?"

Mike:                           "No, Tommy.  And Im 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.   

"On the one hand, it seems self-evident that parents have the right to decide whats best for their children.  But what about abusive parents?  In that case, our laws protect the rights of those children against their parents.  Okay so far.  But how do we define abuse?  Excessive hitting or food deprivation are relatively easy criteria.  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?  Whats not enough, whats too much?   

"You 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 arent so clear anymore. 

"In the last several years, Ive 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 - Ive met many others view their implants as your Aunt Doris views her new toaster oven.  They view implants as a gift from God!  They view it as a way par excel lance of >leveling the playing field, much like the deaf unit avoiding hearing-based idioms. 

"So I still have my own opinion, but I dont take it as written in stone the way I used to.  Thankfully, I dont have to make that decision for my children; other parents do."   

 

Tommy:                      "Youre 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 - Im so much younger now." 

Mike:                           "That was before you were born!" 

Tommy:                      "Well, I know a lot about Dylan but not about everything.  So maybe this is a good time for me to ask you once again: Does God Have a Cochlear Implant?" 

Mike:                         "How do I know!  Ask your Aunt Doris."

 


References 

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 system.   

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, male,     therapist's perspective.  Journal of the American Deafness and Rehabilitation Association, 26(4), 43-55. 

Pollard, R. Q. (1998). Personal communication.