Sunday, September 14, 2008

Ethics and Deafness -Carried Away by Technology

 
Hmm. Your child is born deaf and you are hearing. You try to learn sign and you realize that it feels unnatural. Your friend starts telling you about this amazing deaf child who can speak, sing, play the guitar, etc. thanks to this amazing operation and a device called the cochlear implant. You find out that your child is not a candidate for the cochlear implant because of inner ear malformations. You hear about an incredible new operation called an Auditory Brainstem Implant. This will allow your child to hear and eventually speak, despite the malformations. And what do ya know...they perform the surgery right here in Italy. Then, you read about this child:

After an operation to restore his hearing, Jorden Flowers is ready to learn to listen


JORDEN FLOWERS was born without auditory nerves and ear canals. An auditory brainstem implant surgery - a procedure not approved by the FDA for children his age - has allowed him to hear and speak. But now he must learn to use what he has gained.

By ASHLEY BELAND, The Times-Union


Determination and motivation are two words 5-year-old Jorden Flowers can't say.

And he's shown his family, friends and teachers at Clarke Jacksonville that their meanings don't lie in the sounds you speak.

Jorden, son of Olympic gold medalist Vonetta Flowers and Johnny Flowers, was born without auditory nerves and ear canals. His twin brother, Jaden, was born healthy, despite the pair being born at 30 weeks.

"We didn't even know [Jorden] was alive after the doctors came in," Johnny Flowers said. "They started talking about the complications with premature births. They painted a really dark picture of his future."

But the 2-pound, 9-ounce Jorden pulled through.

That was the first sign of the determination that has become synonymous with the youngster's character. Many other signs would follow, as Jorden became what doctors say is the first American child to undergo an auditory brainstem implant that allows him to hear.

The family began researching Jorden's condition and treatments for his disability. Vonetta Flowers said they immediately started to learn sign language so they could teach Jorden to communicate.

"His first sign was 'milk,'" Vonetta said. "It was funny because he'd do the sign in the middle of the night like he expected you to be watching."

While many babies were watching Teletubbies or Sesame Street, Jorden was watching tapes designed to teach babies to sign.

After a couple of years of research and referrals from other doctors, the Flowerses learned of an auditory brainstem implant that enables people without auditory nerves to hear. There was one catch: The surgery isn't approved by the Food and Drug Administration for children under 12.

The couple was undeterred and contacted Vittorio Colletti, an Italian doctor specializing in auditory brainstem implant surgeries. Colletti was the only doctor performing the surgeries on children as young as Jorden.

The surgery was costly, but Colletti waived his fees and Allianz insurance company donated more than $60,000, Johnny Flowers said. In December 2005, the family was at a Verona, Italy, hospital for Jorden's surgery.

"We spent Christmas in the hospital that year," Vonetta Flowers said. "We were very grateful because usually Christmas is about presents, and we saw Jorden's surgery as the greatest present of all."

Jorden's brain had to heal before the implant could be turned on. He heard his first sounds on Jan. 23, 2006.

While the implant allowed him to hear, it didn't teach him how to hear. That's when Clarke Jacksonville stepped in.

After a trial summer program with the school, the family moved to Jacksonville from Birmingham, Ala.

Clarke Jacksonville is one of only 53 schools in the country that focus not on sign language or lip reading but on teaching the deaf to listen, Allen said.

Since Jorden began classes in the fall, his family and teachers said, they have seen a dramatic improvement in his auditory capabilities.

"Before coming here Jorden didn't really talk, but there's been such a change," Vonetta Flowers said. "It's been very emotional, and we're constantly reassured of our decision to come here."

Jorden also has increased his vocabulary and become more engaged in the classroom, his teacher, Lynn Stoner, said. Stoner has 10 years of experience at Clarke Jacksonville, but she still marvels at the motivation she sees in Jorden.

"I think his determination, his motivation, his willingness to learn is amazing," Stoner said. "He just never gives up."

Most of the couple's friends and family say the trait runs in the family. Vonetta Flowers was the first African-American to win a gold medal in the Winter Olympics.

She used that same determination she sees in her son while training for bobsledding. Vonetta Flowers has retired from the sport to spend time with her children and family.

Despite the difficult journey from Jorden's birth to his start at Clarke Jacksonville, his parents don't regret their choices.

"[Jorden's] first language was sign language, so he could always sign 'I love you,'" Vonetta Flowers said. "... But hearing him say 'I love you' - those are the sweetest words a parent can hear, especially since I never thought I would hear them."

What would you do?


A parent has the right to choose.

 

41 comments:

mishkazena said...

well, the c.i. surgeries have improved over the years due to surgeons getting more practice, better technology, and techniques. So as long as parents do their homework and feel they are fully versed in both the benefits and the risks, I have no problem with that.

However, this surgery seems very risky. I am not familiar with this particular surgery. However the brainstem is the most fundamental part of the brain, controlling the most basic functions of the organism. It covers the circulatory and respiratory systems and is a conduct to the higher parts of the brain. If it gets damaged, it can kill the child or create severe brain damage. I do have serious reservations about the safety of this procedure and feels a case of deafness doesn't justify the potential risks.

Anonymous said...

So speaking "I love you" is superior to signing "I love you"? When will this type of audistic and oppressive attitude towards sign language end? If hearing parents had the opportunity to be mentored by culturally Deaf signing individuals, then maybe we wouldn't have a rush to fix what is not broken.

Melissa said...

I value hearing. As a hearing person, I know the joys that various sounds bring to my life. Furthermore, I have known many deaf children with CIs, and they all will readily and joyfully describe to me and to others the sounds that they enjoy hearing. It is very hard to miss something that you've never had. However, hearing parents know and fully understand the joys and advantages that hearing brings to our lives. Therefore, as parents who want the best for our children, we want these same joys and advantages for our children. That is not "audism;" it is love for our children. My children didn't need ABIs because they could benefit from regular CIs, but, if they could not, I would opt for the ABI.

Paula Rosenthal said...

It seems to me that Jodi's point is that parents have a right to choose what is best for their child. This goes for type of surgery to correct a hearing loss as well as type of communication mode the child will be brought up learning.

Mishka, you said, "I am not familiar with this particular surgery," which has left me baffled. If you're not familiar with auditory brainstem implants, why are you using language about the procedure possibly killing the child or creating severe brain damage? Have there been cases of ABI's that have resulted in this or are you just surmising and thus purposely scaring people?

No decent parent is going to subject their deaf child to any surgery without being "fully versed in both the benefits and the risks."

My child's opportunities and experiences in life are unlimited because I made the decision for her to have cochlear implant surgery so she can hear. Parents have a right to choose for their child. Period. No one else needs to worry, surmise or choose for them.

A Hearing Parent, Deaf Child said...

I also believe in choices. I was the only hearing parent in our small circle of hearing parents with deaf children in a semi-rural community to not choose cochlear implantation for my child. There were only four parents at that time. We went to events together and brought our children along. Eventually, they are grown up and all of them are attending college (just now). We always have kept an open and healthy discussion--always admiring how our children grow. We truly miss them very much.

What we found interesting is that my child is the only one who is multilingual. The other children couldn't pass foreign languages (they excel in other areas, mind you). We came to the conclusion that the children who got CI had "difficulties" in learning foreign languages (perhaps not having been exposed to a full language early on; we could only keep guessing.) My child is the only one who is attending an Ivy League college on a full scholarship.

Do any of us regret our choices? No. We all have different ways to embracing our beautiful children. Being sworn in as an U.S. Citizen almost a decade ago, I decided to make sure my child wouldn't get alienated, as I felt at times. I did ponder about that for my kid, but I chose to brave it along with my child. We conquered together. A few parents of our circle approached me and said they wished they taught their children sign language.

I am sure in some other circle (or group), it could be altogether different. Different expectations, different values, and different backgrounds. Some value language, some value sensory stimulation. All beliefs are equally good.

Kaila

Anonymous said...

I find your comment, Paula, "My child's opportunities and experiences in life are unlimited because I made the decision for her to have cochlear implant surgery so she can hear" entirely audistic. You just made an erroneous assumption that otherwise it would be limited. That reflects an aurally racist and shallow mindset you have, there.

But hey, you made the choice. You felt really great about that. All the power to you (literally and figuratively).

*golf clap* Racist phluck *golf clap*

-Anon

Paula Rosenthal said...

Ummm... how do you conclude from a group of four "that the children who got CI had "difficulties" in learning foreign languages (perhaps not having been exposed to a full language early on)" when there are thousands of children worldwide with CIs who ARE able to learn foreign languages? My daughter was placed in an accelerated Spanish class this year and she has 2 CIs. She had language delays of over a year in both expressive and receptive language when she was diagnosed at 22 months.

Most children, hearing or deaf do not have the great opportunity to attend an Ivy League college on a full scholarship. You imply that it has something to do with the fact that your child knows sign language and is multilingual. Couldn't it also be because your child is exceptionally bright as well as many other factors?

Teaching a child sign language is a choice just as teaching a child to talk is a choice, so is bilingualism. No one choice is right for every child and family. The point is, it is a private, parental decision, not one for the government or anyone else to make for a family.

Notsobroken said...

Melissa: I know being a parent is hard, and filled with a bunch of dilemmas I can't even begin to comprehend. I am not a parent. I am also hearing. So in the particulars of this situation, I am not prepared to point fingers.

On the other hand, speaking from my own experiences: What a child values, and what a parent values, do not always line up. Also from experience: it hurts when the child realizes that, more so when the parent does not.

Consider how it feels when put in the position of being directed towards the parents ideals, and not their own. Being "fixed" when they don't believe something is wrong with them, or being told that something is wrong with them in the first place. Even at a young age, a child can pick up on that "vibe", and this is without any malice on the part of the parent. Custody battles, for one, can be devastating for that reason alone.

I'm not implying that you, or any parent means to tell their child that they're "broken", and that all the beauty they perceive in the world without the use of hearing, is inadequate. But, children have a way of interpreting things, and if one isn't careful, the first thing they "hear", might be just that.

I've been taken unwillingly to church, and presented to pastors as a troubled case, when it was discovered I did not have the faith in the God they felt so much love from. I've been reminded again and again of the happiness they get from their rewarding heterosexual relations, their marriages. So on, and so forth, with other issues as well. This is about when they were trying to be active and concerned parents. To do what they felt was the right thing.

Still, all else aside, none of that had to do with me or what gave me the very feelings they wanted me to have. In the end, I was, and still am, left with the feeling that I'm inadequate because of my differences. Because I find joy elsewhere.

I hope that any parent who does take that route, keeps that in mind. Just as parents who are getting divorced should ideally make it clear to the child that it is not his or her fault. That custody battles aren't competitions about who loves the kid more, etc.

A deaf kid is not broken. He or she is not a tragedy wrapped in an enigma, surrounded by a crunchy shell of despair. A deaf kid is a kid, first and foremost. As I'm sure they prove at any opportunity, with household messes to back them up. ;)

I hope I'm not coming off judgmental here. Like I said: Parenting is difficult. I have no illusions about that. I'm just presenting a concern.

Notsobroken said...

Paula: My comment towards Melissa also applies. Also, bluntly: No, your child's options are not unlimited. No one's options are unlimited. Yes, it's repeated over and over to the children. Reach for the stars, you can achieve anything if you dream it. The reality is that there are always closed doors. Sure, you can open them, but who said a deaf child can't do the same?

Anon: Although I won't say that your wording will win friends, I do relate strongly with the gist. I can't count the number of times I was told: Life will be so much better for you if you do/were xyz, when I thought life was just fine. And honestly, wasn't interested in doing/being xyz.

A Hearing Parent, Deaf Child said...

Paula, you seem to miss several points in my comment and choose to discuss on points that I already answer. I suggest you re-read my comment carefully.

The group at that time were four. It grew to twenty-something. I thought I didn't need to say that, but Paula, you didn't seem to catch that. That's all right. Sometimes, in reading too fast, one can miss some details.

In our group, their children struggled on meeting the foreign language requirement. They had problems pronouncing the French sounds and couldn't hear the subtle yet distinctive vowel differences. They weren't interested about the French grammar, too--unlike my child. We are not aware of other CIs being multilingual at all. There are not that much of a literature on-line or else that shows that. There isn't much of any on native users of sign language, either. It is difficult for many people to learn, let alone retain, a second language. That "difficulty" was just made all the more apparent for their children. Nothing wrong with that. As I said, we all could keep guessing to no end. Are there more factors at play? We seem to feel so, but what are they?

Personally, I do feel strongly that sign language is the primary attribute to who and how my daughter is, today. Our group saw that, also, and welcomed that difference. For her to learn a different language than mine and most native Americans, and then absorb English, it was conducive to the "bilingual linguistic instinct" she came to portray in later years. She had an early edge.

I will never forget the day when she waved the sign for 'I love you' through a window on the back of the bus. The sounds were muted for everyone parent outside, but for me, it was the loudest. It confirmed I made the right decision.

Like I mentioned, I fully support all decisions and choices. My choice, if I went back in time, I'd make the same one over and over.

Kaila

Jodi Cutler Del Dottore said...

Hi. Any time someone places the words "ethics" and "deafness" in the same sentence, all hell breaks loose, add "technology" and you have potential nuclear warfare. *smile* I'm such an instigator.

The purpose here was to make people aware that there is NEW technology available, much like cis became available twenty years ago. Mothers like Melissa were among the first to make a difficult and yes, ethical decision in approaching the deafness of their children. Other mothers, like those of children with inner ear malformations now have an option that may or may not work for their children. What do they do?

Do they travel to Italy to find a surgeon who will operate? Do they decide to become a pioneer in the field of Auditory Brainstem Implantation? I am confident that they will evaluate the pros and cons...that's what concerned parents do.

Advances in technology offer choices to parents. It is the parents' job to carefully evaluate all possibilities and outcomes regarding the operation and the chances for success. The possibility of Hearing vs. Silence. After listening to a surgeon speak, I can assure you that oftentimes there is nothing sweeter than the sound of silence.

A mother wants to give every possible opportunity to her child, or at least she wants to exhaust all possible resources in making decisions. I have heard that the Auditory Brainstem Implant works in fifty percent of the cases, it is not comparable to the success rate of the ci twenty years ago, when it was just beginning to be performed. Not many surgeons perform the surgery and it is still in its beginning phase.
Parents need to be responsibly informed and for now, considering the FDA has not approved the surgery, resources are limited.
We have access to internet, we are not doctors. This surgery was performed in Italy, do American parents speak Italian?

Parents are starving for information, we do the best we can to find it...then we look at our babies and we decide.

It is reassuring to know that there is a Deaf Community waiting for our kids, but not all parents have access to a Deaf community. And...what goes on in my four walls, ain't the same as what goes on in your four walls.

"Ethics," "Deafness" and "Technology": let's not get too carried away.

Jodi Cutler Del Dottore said...

Not so Broken,
Thank you for your comments, you seem to be an Extremely sensitive and empathetic person. I would ask you to understand that when a parent chooses the ci, it is not to "fix" a child, it is to provide access to the hearing world. The ci does not define the child or change the child's deafness, it provides him/her with access to sound, which enables and facilitates mainstream interaction. Keep this in mind. Just as the ci does not define my child, neither does his deafess. He is one boy with many resources and great potential. He is currently looking for love. *smile* Jodi

Rachel @ Cochlear Implant Online said...

I feel that I need to jump in and give my perspective as a CI user. First of all, I would like to post an excerpt of an essay ( http://cochlearimplantonline.com/index2.php?mylife )that I wrote several years ago.

"I wouldn't even have been able to hear the real quality of sounds of my parents saying, "I love you." Even if I just had a hug meaning, "I love you," it still wouldn't be enough to show the emotions of love. Sounds are needed to be there for me to understand the expressions of anger, happiness, excitement, and sadness. Sounds are precious treasures that cannot be kept away from me. It was almost like having a treasure box with precious sounds inside it, sitting and waiting for me to open it to bring all the real miracles that have come to me."

So, since I grew up with sounds, I understand the importance of sounds, and I cannot imagine a life without sounds. I don't feel that it is an audistic attitude for hearing people and CI users to feel that it's important to have the ability hear the sounds because we can't understand what life would be like without sounds. It's just like people who cannot imagine a life without vision. I need to be able to see so that I can enjoy seeing the colors, shapes, the movement of things, and etc.

I also want to point out that ABI has been around for at least eight years. I first heard about ABI when I was in freshman in high school because of a friend of mine who was going deaf due to NF2. According to this site, http://www.earinstitute.org/news/facts/abifact.htm, this implant was FDA approved in 2000. So, I wouldn't consider this as a new technology. It's just a technology that is UNCOMMONLY used and RARELY heard.

a hearing parent, deaf child:

I would be careful about how you view the "statistics" that you personally saw. I know several CI users who were raised without sign language, and they are very successful in learning a second language. I'm one of them. I learned French for four years in school. During my senior year, I competed in a statewide oral-only competition and was awarded "superior," the highest level in Advanced French level. Naomi's son recently aced his Italian oral exam (http://lessonslearnedfroma.blogspot.com/2008/09/he-has-no-damn-right-to-be-that-bright.html ) . Christian, a boy from Germany is speaking German and English beautifully (http://www.youtube.com/watch?v=uAoSIm-oQX0), and there is a girl who is learning four languages. (http://cochlearimplantonline.com/blog/?p=113 ). Even Jordan, Jodi's son, is learning English beautifully as I met him a few weeks ago. I could go on and on about CI users who are learning other languages successfully.

mishkazena said...

I just woke up. If I make typos or grammatical errors, please excuse me in advance as I'm not totally awake.

Paula and Melissa, both of you are highly educated, with professional degrees, who will do extensive research before deciding what procedure is the best for your child. I am not talking about you. I am talking about the average parent.

I am not familiar with this procedure, yes. That's why I made it a point to acknowledge my ignorance. However, I am familiar with the brainstem and there will be some complications from new surgery procedures. We saw that with the C.I. surgeries in the first two decades. Since it comes with the territory, 'thats the reason why the procedures are called experimental.

Paula, scare tactics? On the contrary. As long as they know all the benefits and the risks, I have no issues. As of now, I do have strong reservations about this surgery. There is a good reason why FDA isn't approving it for kids below 12 years old, as of now. They probably will lower it later, after they analyze the results of the surgeries methodically.

In this area, we will have to agree to disagree.

Jodi is right. The parents have the choice to make what they feel is the best for their child. Did I say that I will actively interfere with the rights of the parents? Nope, expressing my strong reservations doesn't indicate that.

There is one thing I want to acknowledge.. that the parents are not attempting to hurt or deprive their deaf children by getting them cochlear implants. They want the best for their kids by giving them every advantages, including the effective use of a sensory organ. Hearing is a cultural value the majority of hearing parents cherish. Since they enjoy the ability to hear, it is natural that they would want the same for their own child.

I'm done with this subject. Have a nice day, everybody.

K.L. said...

Hey Jodi,
Way to stir the pot!

I just wanted to point out that it doesn't have to be either/or. Children can be given an implant and given sign language together. They can learn both. And the earlier they get started, the easier it is.

I have no idea on how the auditory brainstem implant surgery works. I do know that many people think that CI surgery is "brain" surgery, when it is not. It is ear surgery. I would not want to comment on its safety until I did my research.

I do not think it is audistic to want your child to experience the joy of hearing. I think it is a totally normal desire for a hearing parent to want their child to hear and speak.

Anonymous said...

Melissa, it is audism when u look at it from the perspective of that deaf individual. Imagine being told directly and indirectly that you are broken, and can never be as smart as everyone else because you can't hear. You missed the boat on that one. Do the blind miss out as much as the deaf because they can't see? I wont speak for you, but from my experience, i've seen that more people think it's more horrific to be deaf than blind. and why do you think that is? hearing people can still communicate with someone who is blind, but they refuse to make a sacrifice for someone who is deaf. It's all of a sudden too much work. Ridiculous if you ask me, or any Deaf person in the world.

Val said...

..."it's too much work", isn't a fair statement. Do you honestly think we parents took the easy way out by implanting our kids? Many of us quit our jobs, to devote the time needed to teach language/speech to our deaf children. We simply want our kids to communicate wieth the people at Wal Mart or the gas station or their 90 year old great grandmothers....you have to realize that these hearing parents with deaf kids don't live in Deaf Communities, so we look at our options, ALL of them. Would I have given my son a ABI, who knows? My son's ears are very similar to the little boy in the story (who we've been lucky enough to meet in person), this little boy Jorden also received the VisaFix an artificial ear, by the way.

Dianrez said...

Re. stirring the pot...you did it to me, now allow me to do it to you.

Take the child who was born deaf and admire how physically perfect he is. He runs, skips, analyzes, critically examines, laughs and cries. What, you say he is not perfect? Because he can't hear?

Take your own motives. You want to give him what you already have and hold precious...the ability to hear and communicate. What, you think he won't be able to do so otherwise?

Isn't a different method of "hearing" and communicating just as good? Why or why not? Be aware that your own prejudices are coloring your thoughts.

Take the child's own motives. Will he appreciate the artificial hearing, an imperfect and incomplete method of communication, being surgically implanted with an unknown level of risk and unknown future of complications? Or will he appreciate being cherished as he is, healthy and Deaf, and given all the educational advantages that you would give him anyway using other methods?

Will he appreciate a possibly marginal relationship with the hearing world, always a little bit off in timing and comprehension in many situations, and/or will he also enjoy the rich and emotionally satisfying interaction with other Deaf people?

Will he end up a poster child for surgery, forever justifying and demonstrating its benefits; will he become a fully featured hearing person with no thought to the upkeep, maintenance and surgical replacements he will have to go through? Will he have time and energy left over to become a whole person in himself?

In giving him a gift with many qualifications, are you actually trying to impose an idealized version of the child you wanted, or a miniature version of yourself? Is it so hard to accept him for the way he was born, an intelligent Deaf child with huge unexplored potential?

These questions may seem harsh, but consider that the teenager you will have may ask them. Certainly most Deaf people think these, especially after they are given aids or surgery by the people in their families.

Some parents will just dismiss this and merrily go on, confident that their research and calculations of the pitfalls and risks are correct...after all, what do deaf people know about the hearing world?

Indeed, what do you know about the deaf child himself? What do you know of his world after he grows up?

Personally, I have found myself moderating my opinions on surgical treatment of deaf children with the increasingly vocal parent and implantee community coming to the forefront in recent months.

Then an article comes up that talks about brain surgery and I wonder again about the extent to which people will go to in order to achieve their ideal child.

K.L. said...

Dianrez,
Those are all good thoughtful questions. However, there are other considerations:
How isolated will the child be if he/she is the only member of a large extended family with hearing loss?
How many opportunities will not be available to him/her because of the hearing loss? We wish the answer was "none", but we all know better.
How large is the Deaf Community and how available are they in the area?
How is the child reacting to the loss of their hearing, if they had any to start with?

In our case, our daughter had hearing and lost it through illness. She was very clearly unhappy with that, and was clearly very happy when she got her implant. It is not a matter of accepting her as she is, it is more of a quality of life decision for her.

Anonymous said...

When blindfolded, a CIer couldn't tell identify six voices (four hearing women and two hearing men). Worse yet, she was unable to tell whether a speaker was male or female. She couldn't tell whether a male's voice was romantic and sexy or not.

Cochlear implant brings nothing human but sound. Period!

Thank you, Dianrez, for your valid argument!

Rachel @ Cochlear Implant Online said...

Anonymous,

As a CI user, I can easily identify different voices. When I pick up a phone without looking at the caller ID, I can immediately identify if it's my mother or my father or my grandmother or simply a stranger calling.

I can certainly tell if the voice is sexy or not ;).

Anonymous said...

Val, hearing parents may not live in a Deaf world, but their child does,like it or not. Maybe using the phrase "it's too much work" is kind of harsh, but many Deaf perceive it that way. I can respect the fact that many hearing parents turn their world upside down to "help" their child. Does that child really need "help"? If all the effort is being put into speech and hearing, that STILL tells the child that he/she is broken, and cant be as smart or as competent as his/her hearing peers. I'm here to tell you that it can't be further from the truth. That's the ugly thing about audism, it doesn't always come from a place of hate or apathy, it comes from ignorance as well. I think that's why many hearing parents of deaf children become so offended by being called one.
Every child has the right to learn and be educated through a language natural to them. For hearing, it's spoken and or visual language. For the deaf, it's visual. A sign language. spoken language is not natural for them, and no technology will make that happen. And if you wish to argue that a visual language is not natural for for hearing individuals, well you're wrong. There's no good reason that hearing parents cant learn it. ASL is my first language although I am hearing. I have my Deaf parents to thank for that, and it gives me a perspective that most people don't have. I'm not saying that deaf children shouldn't do some speech training, but it needs to be done in a way that respects their natural language (ie, make it secondary). You might be surprised to see how much of a difference that a higher self esteem will make.

Rachel @ Cochlear Implant Online said...

Anonymous,

I have to say that your comment is very disturbing because it shows that you are not aware of many of TODAY's deaf children who are hearing and speaking beautifully with cochlear implants. I have attended numerous CI conventions throughout my life, and I've seen hundreds who are speaking and hearing well, and most of them are even capable of using the phone.

First of all, I would like to say that Val is right that it is NOT easy to raise a deaf child WITH a cochlear implant and to teach them to hear and to speak. My parents had to drive an HOUR EACH WAY once or twice a week to auditory-verbal therapy when I was living in Boston for a few years. My parents also had to travel to New York a few times a year throughout my sister's amd my life for surgeries and mappings. My mother is always on the phone with medical insurance to ensure that processor parts and upgraded processor parts are approved. My mother even had to give up a job. On top of that, my parents spent several hours researching to ensure that they were going in the right direction. I can tell you that as a CI user, I cannot thank my parents for doing all of this work for me so that I could be happy person who is hearing and speaking.

Parents like my parents do NOT think that we're broken. I can argue that over and over. They just want to give us MORE OPTIONS which is the ability to hear and to speak. They KNOW that we'll always be deaf regardless.

I can tell you that as a CI user, visual language is not a natural language for me because I RARELY see visual language, and I can hear and speak perfectly well. In fact, my sister who is also deaf, but hears with a cochlear implant is an auditory learner, which means that visual language is also not natural for her.

Deaf children like my sister and me have the right to learn a spoken language so that they can communicate with the general population.

I'd suggest that you visit a cochlear implant convention.

Melissa said...

I was going to add another comment here pointing out the fallacies in what Anonymous and Dianrez wrote until I read both of my daughter Rachel's comments. Way to go Rachel! Her comments say it all.

Years ago, when I got the same flak from the signing deaf community filled with the same falsehoods that you are still spouting today, I calmly said that we just needed to wait until these early CI kids were old enough to speak for themselves. Rachel has now done that beautifully, and I couldn't be more proud of the adult she has become. No one can say it better than she can because she has lived the life that you label "artificial," "marginal," etc.

Rachel's deafness is very much a part of who she is. Giving her a CI did not take that away from her. Her definition of life with deafness, though, is very different from what it was for those raised a generation or more before her and is very much the definition of what it is and is going to continue to be for kids born deaf today.

There is nothing about Rachel's life nor her ability to communicate that is either artificial or marginal. You only need to witness her navigating her way around Europe on her own for the past month and a half to know that.

Anonymous said...

Jodi, I do not know about you, but when others say "Parents' right to choose" all to often this seems to come with the unwritten "if you agree with me". Would you support the decision of a Deaf couple to do what so many Hearing couples do and "make my child like me", that is, have surgery done to make a hearing child deaf?

David

Jodi Cutler Del Dottore said...

Dear David,
Would you support the decision of a Deaf couple to do what so many Hearing couples do and "make my child like me", that is, have surgery done to make a hearing child deaf?

Um. No. I haven't taken anything away from my child that he wasn't already born with. My intention was not to make my child like me, it was to give him access to sound.
Jodi

Anonymous said...

Melissa said:

There is nothing about Rachel's life nor her ability to communicate that is either artificial or marginal. You only need to witness her navigating her way around Europe on her own for the past month and a half to know that.

Certainly, anyone can navigate around Europe on their own deaf or not, with a CI or not, without any artificial means of producing hearing or with.

The arguments/debates here are bordering on ridiculousness.

Every parent has a right to choose.

Rachel @ Cochlear Implant Online said...

anonymous,

My mother (Melissa) was just simply pointing out that even deaf people who are being raised with cochlear implants and who hear and speak can still be successful in life, even if they choose not to learn sign language.

My mother had the right to choose not to teach me sign language and to choose to teach me to hear and to speak and to get a cochlear implant.

Anonymous said...

rachel, i guess we'll have to agree to disagree. If you think I don't know todays deaf children, then you're wrong. I've been in deaf education for more than a decade, I know and have observed more CI children than you know, and believe it or not, you're the exception to the rule. Most children with CIs do not become a hearing success. And seriously, don't ever say that visual language is not natural for the hearing. That statement can only be true if you are blind. Every hearing person who isn't blind can use their eyes. It's just as natural as spoken language.

Anonymous said...

Jodi,
I have taken a while to think about this response. Your answer to my question reveals the heart of audism and that is that Deaf lives are in some way worth less than Hearing lives.
Every majority culture tends to value the lives of those in minority cultures less than their own. White people have not valued Black (non-White) lives as their own. Men have not valued women's lives as their own. Catholic Europeans did not value Jewish lives as their own. Even in the Americas, the various Indian tribes did not value the lives of those not of the tribe as their own. Similarly, Hearing parents often cannot envision that their Deaf children could have a life as rich and fulfilling as their own unless the parents can make their children more like Hearing ('fix them').
*That* is the heart of audism. Jodi, CI's *are* taking away from Deaf children something they are born with and that is their Deaf lives. Rachel is a prime example of that and neither she nor her mother can see that. (BTW, that is why neither is qualified to judge whether something is audist or not)
As in other majorite=minority issues, those in the majority culture never understand until they can somehow see through the lens of the minority culture.
You are entitled to your own point of view, of course. However, please be aware that simply accepting that 'it's a hearing world' places you side-by-side with oppressive majorities through the centuries.
David

Jodi Cutler Del Dottore said...

David,
I am Jewish. Living in Italy, a Roman Catholic Country is extremely difficult. My daugher attends a public school with a crucifix on the wall of her first grade classroom.
I am Jewish.
My husband's family is Catholic. I made the decision to allow my children to celebrate holidays like Christmas and Easter despite my traditional religious beliefs. I decided that their participation in my husband's family traditions depite the religious significance was more important for their growth than me sticking to MY Faith and insisting on my religion...a religion that I DID NOT HAVE ACCESS TO BECAUSE THERE IS NO SYNAGOGUE IN GROSSETO.

Audist?
Add bad Jew, as well.
Jodi

Rachel @ Cochlear Implant Online said...

Anonymous,

I am definitely NOT the exception to the rule as I've said, I met HUNDREDS of successful CI users over the years at cochlear implant conventions and events. I'd advise you to visit these conventions that are happening within the next year:

- Cochlear Implant Minutemen Convention in Massachusetts
- Cochlear Celebration in California
- HLAA in Tennessee

The children with CIs who are not doing well are probably due to lack of parental involvement. As I said, it is NOT easy for parents to raise deaf children with CIs. It's a HUGE EFFORT.

I was one of the first 200 children in the country to receive a cochlear implant, which means that I am one of the few adults today who received a cochlear at such a young age. Just give another 10-20 years... and you'll see...

Children in the past decade have been receiving implants as young as 6 months to 12 months, and they're blossoming beautifully.

I said that visual language is not natural for ME and MY SISTER.

Rachel @ Cochlear Implant Online said...

David,

That's fine if you want to call me audist and feel that my CI has taken away something from me if I feel that I'm living in a happy and fulfilling life.

I have the right to choose which culture I should be part of.

Also, I know a few CI users who went to RIT, and once they graduated from RIT, they said that they were done being part of the Deaf culture and did not want to do anything with the Deaf culture any longer.

So, people should have the right to choose whether they should be part of the deaf culture or not.

Anonymous said...

Rachel @ Cochlear Implant Online,

you said you met HUNDREDS of successful CIers at conventions.

SHOW US SOME PHOTOS of them talking with hearing people to prove your argument!

Anonymous said...

Rachel @ Cochlear Implant Online,

you said visual language is not natural for you & your mother.

BWWWHHHAAAAAAA!

Do you drive blindfolded?

Rachel @ Cochlear Implant Online said...

"you said visual language is not natural for you & your mother.

BWWWHHHAAAAAAA!

Do you drive blindfolded?"

This is absolutely an immature comment as it shows that you do not respect my feelings as an individual. This is one of the reasons why I can't deal with the Deaf community in general because I come across too many immature and disrespectful attitudes like this one.

I don't have issues with deaf people who use sign language and feel more comfortable using it. I respect their feeling that it is a natural language for them because they have the confidence to communicate, and they're happy with their life. I just simply don't feel comfortable using sign language myself and that's just MY OWN PERSONAL feeling, NOT ALL of deaf people's feelings.

That is the BIGGEST problem that I have with many people in the Deaf community. Many of them will not respect people's choice of communication methods. Just because deaf people are deaf, that doesn't mean that they should automatically learn sign language. They should choose the mode of communication of which they feel most comfortable using which is either spoken language or sign language.

Here are some photos of CI users hearing and speaking with hearing people -

http://www.filmmakersdream.net/travel/wp-content/gallery/italy-grosseto-aug15/img_0745.jpg
http://www.cochlearamericas.com/images/celebration/003.jpg
http://www.cochlearamericas.com/images/celebration/042.jpg
http://www.agbellnj.org/images/Image0453.jpg
http://www.cochlearamericas.com/images/celebration/225.jpg
http://www.agbellnj.org/images/Image0422.jpg
http://www.cochlearamericas.com/images/celebration/Best084.jpg

For your information, these photos that you are seeing is MY deaf community. As you can see, there are more than one type of deaf communities, including the signing deaf community and the spoken language deaf community. As I said, we have the right to choose which communities and which cultures we want to be part of, and we should respect each others' choices as long as we are all happy with who we are and our life.

Paotie said...

Mishka ..

You said:

"However, this surgery seems very risky. I am not familiar with this particular surgery. However the brainstem is the most fundamental part of the brain, controlling the most basic functions of the organism. It covers the circulatory and respiratory systems and is a conduct to the higher parts of the brain. If it gets damaged, it can kill the child or create severe brain damage. I do have serious reservations about the safety of this procedure and feels a case of deafness doesn't justify the potential risks."
---

What the fuck are you talking about?!

You reek of estrogenical treachery!

Golly-goodlums!

:o)

Paotie

Paotie said...

Anon ..

Gawrsh! I just picked one comment cos most of your comments are redundant. You said:

"I find your comment, Paula, "My child's opportunities and experiences in life are unlimited because I made the decision for her to have cochlear implant surgery so she can hear" entirely audistic. You just made an erroneous assumption that otherwise it would be limited. That reflects an aurally racist and shallow mindset you have, there."

Strangely, you remind me of Mishka.

:o)

Paotie

Paotie said...

Notsobroken ..

You said: ": My comment towards Melissa also applies. Also, bluntly: No, your child's options are not unlimited. No one's options are unlimited. Yes, it's repeated over and over to the children. Reach for the stars, you can achieve anything if you dream it. The reality is that there are always closed doors. Sure, you can open them, but who said a deaf child can't do the same?"

Ya'know, Ella Mae Lentz - one of MANY Deaf Bilingual Coalition leaders (thanks to Mishka!) - would be yelling at you by now, calling you the following:

a) audist
b) dysconcious audist
c) deficit thinker
d) all of the above

Yup. You sure are those things - thanks to Ella Mae Lentz's personal philosophy of Deafhood called, "Make Money Selling Seminars to FOURTH GRADERS!"

HaHa!

:o)

Paotie

Amy said...

Anon has no clue. Here's an example of a 2 year old deaf child listening to a story, commenting (sometimes in full sentences), making his voice sound "scary" when he says the word, and generally communicating very easily (and listening to a book spoken at a normal or even soft level.

http://www.youtube.com/watch?v=X-IO-rq_LKM

The question is no longer whether they work, but simply how long before everyone is aware of them so that all children who are candidates for cochlear implants can have the same opportunities of ease of communication at an early age by receiving them early enough, having appropriate listening practice, etc.

I have no doubt that when the ABI is perfected and FDA approved, the number of potential candidates combined will be greater and the beneficiaries will be greater, too. There's nothing unusual whatsoever in thinking that restoring the 5th sense is a worthwhile objective for parents. It's not audistic to know that all the senses are important and should be sought after whenever the restoration is available.

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