Why is Deaf Culture Against Cochlear Implants

An implant for deaf children that not all parents want

This research comes from DATUM, the Austrian monthly magazine for politics and society, and appeared there in the November 2019 issue under the title "The Gift". It is the winning text of the DATUM talent program 2019, in which young journalists learn the craft of quality journalism.

As a baby, Tobias was given a rattle. Or a radio play. His father Frank doesn't remember exactly what it was. But he still knows exactly what he thought at the time: He can't hear that, he'll never be able to hear, he'll never benefit from it. Because his son Tobias was born deaf. Since his birth he has heard: nothing.

His parents, Frank and Simone, are not surprised to find out. Because Tobias ’grandparents, Simone's parents, are also deaf, but she can hear herself. My mother tongue, says Simone, is Austrian sign language, the language of the deaf. At some point as a young woman, she then asks herself: How likely is it that I too will have deaf children one day? She goes to the doctor and wants to know. Fifty-fifty, says the genetic test. She tells her husband Frank at the beginning of their relationship. He goes to himself, thinks about it, and decides that you either want children or you don't and that he would want them even if they didn't hear anything. In 2013 his first son Tobias was born in Innsbruck.

On the third day after the birth, Tobias will have a hearing screening - a routine examination that is used to detect congenital hearing disorders in babies. The devices are broken, your son probably won't have anything, we'll try again tomorrow, the nurses are trying to reassure the parents. But they know: the devices are not broken.

Frank and Simone go home, get a pot from the kitchen, start beating the pot and watch whether Tobias reacts. He doesn't react, he doesn't do anything. They snap and clap and imagine that this time he reacted. Or not? Thinks Frank, But now! So he reacted! Or was it just a coincidence?

Certainty in a clinic in Innsbruck

A few weeks later they go with Tobias to the HSS, the clinic for hearing, voice and language disorders in Innsbruck, where they find out that their son hears almost nothing. He gets hearing aids that don't help. It is only in the sixth month that Frank and Simone find out why this is so: Tobias has no cochlea at all on one ear and just a bag-like structure on the other.

You leave the clinic and take a look at each other first. I would have liked to have given you a hearing child, says Simone to Frank. She makes herself feel guilty and he tells her to do it. But they don't have much time for this, because from now on they are faced with a question that all parents have to answer when they give birth to a deaf child: Do we want to implant a CI in our baby?

The story of Simone and Frank and their deaf son Tobias is about a very small minority, the deaf community, and their relationship to the so-called cochlear implant, or CI for short. The cochlear implant is a medical invention that has made it possible for deaf and hard-of-hearing people to hear, especially since the 1990s. There are currently around 8,000 deaf people living in the whole of Austria. Exact numbers are not available because deafness is not notifiable in Austria. The proportion of deaf people around the world is very similar to that in this country: Any doctor, any researcher would say that they make up around one per thousand of the world's population.

Deafness is not a disability

For decades, no for centuries, this tiny minority has been fighting for accessibility, equal opportunities and the recognition of their language, sign language. Because: For many, if not most of the deaf born people, deafness is not a disability, but part of their identity and culture, which is disregarded, discriminated and threatened by the hearing majority society. In this struggle for recognition, the deaf community has probably rarely felt as threatened as it did in the early 1990s when the cochlear implant was introduced in Austria.

A CI basically consists of two parts: the implant and the sound processor. The implant is inserted behind the ear during an operation on the brain and partially takes over the function of the damaged cochlea. The sound processor, on the other hand, is worn behind the ear and can be removed by the person concerned at any time: like glasses that are placed on the bedside table before going to bed.

After the implantation, the real work begins: in years of training with speech therapists, early interventionists and with the help of audiologists, hearing and speaking are learned step by step. How successful this learning process is depends above all on when the implantation takes place. Doctors say the earlier a CI is implanted, the better a child's hearing and speech development will be. Ideally, the operation is carried out in the first year of life. Therefore, parents have to decide very soon after the birth whether they want to have a CI implanted for their child or not.

Implant or no implant?

The question CI, yes or no? Simone and Frank discussed over and over again during hours of highway driving. Frank is for it, he thinks: Why a net? An additional sense does not hurt. Simone is against it, she grew up with deaf parents and thinks: For what exactly? He is quite a normal, healthy person and has the sign language! The discussion between Frank, a man who listens and has always heard, and Simone, a woman who grew up with deaf parents, is representative of the conflict between a hearing majority society, which means well, and a deaf minority, which is feels patronized by it.

But it also represents the conflict between doctors who want to help and deaf people who don't want help because they don't feel helpless. In extreme cases, this conflict can even go so far that it ends up in a court of law, as was the case in Germany last year, 2018.

In the Lower Saxony city of Goslar, the Braunschweig Clinic is suing the deaf parents of an equally deaf boy because they refuse a CI implantation for their one and a half year old son. The clinic sees this rejection as a threat to the well-being of the deaf boy, who is denied participation in the hearing world. A great wave of indignation breaks out in the deaf community, and the German Association of the Deaf publishes a statement that speaks of tendencies hostile to disabled people that were long believed to have been overcome.

Implant not essential

The verdict is only given over a year later: The family court in Goslar decides in the interests of the parents. In a ten-page decision, the court argues among other things that the implantation of a CIs is not a vital medical treatment to ensure the survival of the child, and that the deaf also lead a happy life with a high quality of life.

Cases like the one from Germany are not the rule. Most doctors would say that CI implants without parental consent are pointless - including Wolf-Dieter Baumgartner, ENT consultant and CI specialist from Vienna, who in the past has repeatedly been confronted with sharp accusations from the deaf community . We are Nazi doctors and we eradicate the deaf culture! This is one of the accusations that came up when, in the 1990s, he was one of the first doctors in the world to begin performing CI implants on deaf babies. The name Dr. Baumgartner is a name everyone will read or hear when dealing with cochlear implants and deafness in Austria.

No denigration wanted

Baumgartner is the managing senior physician at the ENT department at the AKH in Vienna. He gives interviews about the CI, writes medical essays about the CI and is President of the Hearring, an international ENT research network that works on the further development of treatment methods for deaf people. It will be weeks before he finds time for an interview on the 15th floor of the AKH. There he is sitting in a white doctor's coat on his office chair and right at the beginning of the conversation he says how important it is to him that cochlear implants and the people who wear them are not denigrated here. He has to give interviews all the time, which feels like 30 times a year, in which he defends the CI against prejudice, says Baumgartner.

He is used to speaking about the CI and emphasizing its effectiveness and does so out of deep conviction. You can tell by the fact that he reacts impatiently and annoyed when you interrupt him and confront the criticisms of the Austrian Association of the Deaf about the CI: Because they are not correct and I can no longer hear this nonsense, he says.

These allegations, which Baumgartner calls "nonsense", sound something like this: Doctors urge parents to have cochlear implants inserted into their deaf babies. Doctors do not provide enough information about alternatives to such a measure - such as promoting sign language. Doctors promise too much: CIs do not always work as announced before implantation. Doctors view deafness as a defect that must be fixed at all costs and focus too much on the hearing impairment and too little on the person affected.

No understanding for the allegations

Baumgartner is not only annoyed by these allegations, but also cannot understand them: We want to help people cope with their life situation based on our most causal professional motivations. For him, all the claims made by the Deaf Association are not about worrying about whether a CI works or not, because it does, otherwise people wouldn't stand in line. Rather, he sees behind this the fear of the deaf community of the disappearance of their language and culture: But what should I do? I can't stop vaccinating mumps and rubella just so that I can produce more deaf people a year!

What Baumgartner says here was of course never required by the Austrian Association of the Deaf. The fact that he allows himself to be carried away with such statements in conversation shows how often Baumgartner had to defend himself against the allegations of the deaf community in the past. And: that he still cannot understand why he has to do this at all. Nevertheless, it is important for Baumgartner to emphasize that he does not see the Deaf Association as an opponent: The Deaf Association has a completely different job than me, and that is no less important than mine. He represents deaf people who communicate using sign language, and he should be able to do this undisturbed. I help people who want to hear.

When Tobias ’grandparents, Theresia and Gottfried, learn that their grandson - like themselves - is deaf, they are sad. Not because they see deafness as a deficit, but because they know from their own experience which hurdles are waiting for Tobias: in a society that is not geared towards the deaf. Theresia and Gottfried already faced these hurdles in their school days.

Sign language banned in school

At that time, the CI did not yet exist, many of their classmates instead wear hearing aids that do not help and are uncomfortable. Some of them purposely toss their hearing aids down stairs because they feel dizzy and no longer want to wear them. Tobias ’grandfather also throws his hearing aid into the pond one day and tells his teacher that the fish need it today to find their food. The face of his teacher back then makes Tobias ’grandfather laugh to this day. During the breaks, the students secretly teach each other sign language, which is officially forbidden at their school.

The requirements of the school are: lip reading, practicing speaking, being fit for the hearing majority society. It is the teachers' duty to enforce these requirements by all means. In class, the children are forced to speak: Theresia, Tobias' grandmother, will never forget the days when she stood in front of the mirror for hours with her neck stretched forward, the back of her hand under her chin to practice the correct pronunciation of consonants - a " m "looks like a" p "‹, but an "m" vibrates, a "p" not, she learned at the time. But it also learns what science has already proven: that only about 30 percent of all words can be read on the lips. Theresia will never understand the remaining 70 anyway, no matter how hard she tries.

Retreat into the deaf world

The memories of the school days are painful and lay the foundation for how Tobias' grandparents are treated again and again in the course of their lives by the hearing majority society: work colleagues who accuse them of being irresponsible because they have children as deaf parents, derogatory looks on the street when they communicate in sign language, rolling eyes at the office when they have once again not understood something - all of this has reinforced Gottfried and Theresa's distrust in the hearing majority society and led them to withdraw even more into the deaf world .

The American psychologist Harlan Lane, who wrote a book on the history of the deaf community, sums it up in his foreword to "When the Mind Hears" as follows: The history of the relationships between the hearing-speaking society and the deaf and people who communicate by sign language is an excellent case study of the motives and means at work when fear of diversity leads to majority oppression of minorities.

Harlan Lane's book is like a manifesto in the Deaf world: anyone who deals with the Deaf culture will come across it sooner or later. It is about the story of the deaf and mute Laurent Clerc and his struggle for the recognition of sign language. This fight is still not over. It has probably become even more intense since cochlear implants existed.

Grandparents against an implant for their grandchildren

And so Tobias ’grandparents do not want their deaf grandson to have an implant - despite or precisely because of all the discrimination they have experienced - he can do everything except hear! Tobias was born deaf, his mother tongue is sign language, he doesn't have to be "repaired", they think. When they see other children with implants, they fear that sign language will eventually become extinct, and with it: the identity of the deaf.

Helene Jarmer, the President of the Deaf Association and former Green MP, is the face of the deaf community in Austria. For years she has stood up for people like Tobias ’grandparents. Jarmer himself lost her hearing in an accident at the age of two and can only remember when the church organ suddenly stopped playing.

Today Jarmer is 48 years old and fights for the rights of the deaf in Austria. In her office on Waldgasse in the tenth district, an interpreter and an interpreter sit across from her, who take turns translating what Jarmer is signing during the interview. She is an exception in the deaf community, because not many manage to follow the educational path that Jarmer has covered in the course of her life: elementary school, secondary school, pedagogy degree, teacher, politician.

Deaf people rarely have a career

Many deaf people, says Jarmer, work as community servants, do copy services and take care of the mail. A few manage to work as educational assistants, teachers or interpreters, but most are denied a brilliant career: because of limited access to comprehensive education, says Jarmer.

Not because deaf people are not interested in further training, but because there is usually no one who can impart knowledge to them in their language, the sign language. Because what many do not know: The Austrian Sign Language (ÖGS) is not just any sign language that translates German words into pictures, but has its own grammar and standardized vocabulary and has even been anchored in the Austrian Federal Constitution as an independent language since 2005.

Deaf people who sign cannot automatically write German sentences because German is a foreign language for them that they first have to learn, just like Austrians learn Spanish. To do this, however, they need someone who can explain the written German language to them in their mother tongue.

Lack of accessibility

To this day, however, teachers who teach deaf children in Austria do not have to use sign language - they usually do not either because they often do not really have a command of it. And so, says Jarmer, the reason for the inadequate education of the deaf is not their deafness, but the lack of accessibility in schools and universities. It would be the task of the majority society, the politicians, to ensure this accessibility.

She wants to change the system, not abolish deafness. For this reason, she has been campaigning for the recognition of Austrian sign language as a second language of instruction in schools and universities for years. The cochlear implant that enables deaf children to hear is certainly not of great help in this tireless fight that Jarmer is waging. Because: It is assumed that children with implants do not need sign language because: they can hear.

No guarantee for the implant

That is at least often the argument of medicine, which annoys Jarmer: The fact is: A CI does not guarantee that the wearer of the implant can express themselves like hearing people. She knows people with implants who do not speak well despite having a CI, but who have never learned sign language because doctors only promote the child's speech and hearing development after an implantation: These people are now adults and have no language in which to express themselves and so they feel at home neither in the deaf nor in the hearing world, says Jarmer, the doctors often only see: okay, defective, repair - done. They don't care what it's like after and before. It is important to her that it is not only about the question of how to get rid of the hearing impairment as quickly as possible, but also about who this person is and what he needs to develop a healthy identity.

Wolf-Dieter Baumgartner could be upset about these allegations for hours because they are plain and simple wrong. For years, even for decades, he emphasizes, the information brochures and folders of the Deaf Association have been available in his outpatient clinic. In every CI consultation that he has with parents, he always refers to the sign language, but I can guarantee you that 99.9 out of a hundred parents say: no, implant, tomorrow, immediately!

But is what parents want always the best for their child?

Practice speaking, practice speaking

Jennifer doesn't find. She was born deaf 25 years ago in Vienna and received an implant on her left ear as a two and a half year old and on her right ear as a six year old. From a medical point of view, that is relatively late. Nevertheless, Jennifer can hear and speak today without any problems, even if her voice sounds different: a little bright, a little squeaky. She sums up her childhood like this: practicing speaking. All I had to do was practice speaking. She hardly had time for friendships, except on birthdays, which she regrets to this day.

In elementary school she attends an integration class in Vienna, where she is not the only deaf student. One day a deaf classmate shows her the sign for the word "car" ‹. As Jennifer talks, she raises her two hands in the air as fists and alternately pushes them up and down - as if she were sitting behind the wheel. It's her first sign language word and the moment Jennifer realizes that it's somehow easier for her than speaking.

Mother against sign language

She goes home and for the first time expresses a wish that she has not let go of since: You, mom, I want to learn that too. But her mother won't let her. She is still unsettled by the words of a former school principal: Her daughter is stuck with sign language anyway. She stays stupid, like all other deaf people. At that moment, Jennifer's mother makes a decision: not a single gesture, just speaking, that's the only way she gets ahead.

But Jennifer doesn't listen to her mother and lets the other deaf children in her school teach her more and more signs until she can at some point easily communicate in sign language. And so Jennifer signs at school, which feels easy, and speaks to her parents at home, which feels heavy. But it's not easy for Jennifer to deal with the deaf either. As a teenager she had her first bad experience with the community: You are a CI wearer, you are worthless, you are unnatural! They say to her.

The "CI wearer"

Jennifer desperately wants to belong, but with her CI she never meets with complete acceptance by her deaf classmates. For them, Jennifer is someone who denies her identity and culture - a "CI wearer" and therefore not one of them. It is a phenomenon that can be observed again and again in the deaf community: the suspicious, sometimes almost negative attitude towards people who hear.

For Jennifer, a life begins on two fronts: on one side she fights against the prejudices of her deaf classmates, on the other against those of her mother, who doesn't like to see her daughter sign. She is probably one of those examples Jarmer, President of the Deaf Association, means when she speaks of people with implants and identity crises.

At home in no world

To this day, says Jennifer, she feels at home neither in the deaf nor in the hearing world. For them, sign language is their mother tongue: the one that feels natural. The spoken language, on the other hand, is a "luxury" and at the same time indispensable because this is the only way she can communicate with her mother. Otherwise, Jennifer would have probably already taken off the CI, because she can only relax and be herself again in the evening after work, when the CI is off: It's as if it clicks and I'm finally closed again Home and no longer have to exert myself.

Like the President of the Deaf Association, she emphasizes again and again how important it is that deaf children who receive an implant learn sign language at the same time. So that the same thing does not happen to them as you do. Above all, she wants more acceptance and openness from the deaf community, which should do more for their integration into society. But, and one must not forget: Jennifer is only one of several thousand CI wearers in Austria, and so is her experience.

Proud CI wearer

The opposite of Jennifer is male, 18 years old, blond and is called: Emil. If Emil didn't mention that he has a CI, the other person wouldn't even notice. His blonde locks are just so long that they hide the CI underneath. He's a proud CI wearer, he says, but still doesn't want to be stared at in the street. His voice could be the voice of any other 18-year-old high school graduate from Vienna.

In the one-hour conversation at Café Blaustern there is no question that Emil does not hear or misunderstand. If he didn't have to take off the CI every day before going to bed, he would sometimes forget that he is deaf, says Emil jokingly. And you believe him because: When you sit in front of him and chat with him, you can almost only be amazed at what medicine is already capable of today.

This is probably due to the fact that Emil received an implant when he was nine months old, much earlier than Jennifer. According to doctors, his age is the perfect time for an implantation.

Only swimming is not possible with CI

Emil sees himself like everyone else. He is a person who listens, who has always heard, and who neither has nor desires an identity as a deaf person. In his free time he does the same thing as any other high school graduate his age: meeting friends, going out, looking forward to the high school graduation trip. Just swimming, he can't do that with CI.

Unlike Jennifer, Emil did not attend an integrative class, but was always in a regular school. The most important thing is to bring up the implanted child in a normal way - like any other, he is convinced, as my mom did with me. He has no more to do with deaf people than most other teenagers his age. He cannot understand that there are parents who voluntarily decide not to have an implantation: if I don't have a leg and need a prosthesis, I wouldn't refuse it.

Grateful for the implant

He knows that the deaf community would probably not welcome him with open arms: For them, CI wearers are people who have left their family - the deaf community, - he says, rolling their eyes. Emil is grateful to his parents that with the implantation they gave him the opportunity to hear and to participate in the hearing world, because: I go on social media, look around and see only hearing people everywhere. Where would I be now without my CI? He sometimes asks himself. He thinks that robbing his own child of a normal life is pretty mean.

Frank is afraid that Tobias could later accuse his parents of having denied him participation in the hearing world. What if he asks me at some point: Why, Dad, does everyone have a CI except me ?, he says and wants to know, before the final decision is made, whether a CI would even be an option with Tobias.

Too many risks

Together with Tobias they drive to Dr. Sprinzl, an ENT doctor in Lower Austria, who was recommended to you by friends as one of the twelve best CI surgeons worldwide. Once there, they are sitting in front of a man who, they have been told, carries out around 600 CI implantations a year. Sprinzl sees Tobias' CT and MRI images, scratches his chin and says that Tobias is a difficult case. An implantation would be possible, yes, but only in one ear, and even then there could be problems: Tobias ’organ of equilibrium could be damaged in the course of an operation. For Frank there are too many "could" and "would" in one sentence.

The visit to Dr. Sprinzl marks the end of the discussions - Frank and Simone decide against the implantation. It is more important to them that Tobias can ski than maybe at some point being able to hear. Unlike many other parents, they are proficient in sign language and have many good contacts with deaf people, most of whom lead happy lives. He can do it, thinks Frank, and we can do it too.

First sign "light"

Today Tobias is five years old, has blonde hair, brown eyes and a brother who is two years younger who listens. Neither of them has ever asked why Tobias can't hear anything. For them it is normal that there are people in this world who hear and those who do not hear. Tobias belongs to the second kind, just like grandpa and grandma. Tobias signed for the first time when he was about eleven months old - "Light" was his first sign: the hand is raised approximately at eye level, the fingertips drop down slightly and are opened and closed alternately: light on. Light off.

This is a very typical first sign for deaf babies and shows, says Frank, how important light is for deaf children. Tobias can now sign like a child his age can speak. He knows that very few people in this world understand him: his parents, his brother, his grandparents, his deaf assistant in kindergarten.

Another cry

When Tobias cries, he has a very special look, Frank noticed. He doesn't close his eyes, as one is used to with crying children, but raises his eyebrows and keeps his eyes open. He does this because in desperation he looks around for someone to comfort him. Unlike Tobias, children with healthy ears can hear the familiar voices of their parents. You can close your eyes with peace of mind. For Tobias, only what he sees exists in such a moment. If he closed his eyes, he would be all alone in his despair.

Until last summer, Tobias attended an integrative private kindergarten in Innsbruck, where his deaf assistant Mariya translated everything for him four times a week. This is not due to politics, but solely to the commitment of his parents. In an arduous fight against and with the authorities in Innsbruck, they managed to convince the state of Tyrol to employ Mariya in the kindergarten. How do parents who have less money and time do it, one wonders when Simone and Frank talk about this fight.

Since this autumn Tobias has been attending an elementary school in Innsbruck, where he is taught in an integrative multi-level class. He is the only student there who does not hear anything. Mariya came with him and gave up her job in kindergarten for it. That too was fought for by Simone and Frank. When you think about the future of your deaf son, you have two worries: Tobias ’education and his social contacts.

Flashing systems for Tobias

Tobias will never passively gain experience or acquire knowledge, says Frank. When he's on the bus, he'll never overhear what other people are talking about. Like his younger brother Lukas, he will never notice what's to eat today when Frank and Simone talk about it in the kitchen. When everyone runs to the door because his grandpa has just rang the bell, only Tobias doesn't know. That's why his parents recently installed flashing systems in the living room. When the doorbell rings, it lights up now too, and Tobias knows: someone is coming.

For Tobias, meetings with deaf children of the same age are important because they transport him to another level, says Frank. He notices that after just a week at a deaf camp, his son is expanding his vocabulary, telling more, making jokes, becoming more open. That is why Frank and Simone try as rarely as possible to miss events such as children's birthdays or ski trips with deaf children and travel long distances.

This is completely normal for Simone, she already knows it from her parents, who also always tried to maintain their contact with the deaf world. This is how it is with deaf people: Because there are not many of them, they spare no effort in building and maintaining friendships across national borders. It will probably be the same for Tobias.

If he then reproaches his father for not having opted for an implant, Frank can tell him: We have tried everything, but it would not have made sense with you. And even if he doesn't believe that the accusation is really coming: Frank and Simone now have at least one answer. (Marija Barišić, March 8th, 2020)