Tuesday, September 16, 2008

Ethics and Deafness: Dianrez Weighs In

 
Dianrez asked some thought-provoking questions:

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?

Me: Why shouldn't he ALSO be able to 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?

Me: Without his amplification he would not have been able to communicate with his peers...or hear.

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.

Me: There is no different literal meaning of "hearing" - you hear or you do not. Figuratively speaking, I could "go there," but I'm focusing on the literal. Additional methods of communicating are always welcome. I am not prejudice in regard to deafness, I treat my child as an individual and address his personality and needs.

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?

Me: I cannot comment on a new mother's situation without knowing about her family or the specific child. Given where the technology is at this point in regard to the ABI, I would have to really be convinced to have that operation performed on my child. In regard to our experience with Jordan, he has always "heard artificially," has only complained when the batteries die and is utterly cherished for the person he is...healthy, Deaf, American, Italian, big brother, beach-volleyball player, stubborn adolescent middle school student.

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?

Me: He doesn't "appreciate" his relationship with the hearing world, because it is all he has ever known. We take many things for granted. He enjoys rich and satisfying interactions with other deaf individuals all of whom are amplified and speak. One day, I am sure he will learn sign language and explore the Deaf community, that is not our reality at the current time.

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?

Me: He is already a "poster child" of his own free will, he doesn't need me to express his thoughts...he has a voice of his own. And people do not need me to translate his words any longer. We'll deal with the surgical replacements when the time comes, no one said this was an easy process. Is anyone ever really a whole person...I'm still searching for me - I think that's what makes life a continual growth process.

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?

Me: *smile* God forbid that I create a mini-me. If you limit his ability to hear and receive the greatest number of messages possible (many of which are received auditorily), you limit 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?

Me: Rhetorical question?

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

Me: I only know my deaf child and he's teaching me more and more on a day to day basis. I will always be a part of his world - I'm a meddling mamma.

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.

Me: This gives me great pleasure! *smile*

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.

Me: I agree 100% (It took me the whole comment to get here, but I agree)
However...a parent has the right to choose.

24 comments:

Paotie said...

Jodi ..

Dianrez is guilty of spreading stupid ignorance. She will declare one thing at one blog and then declare something else entirely at another blog.

Hell, when she was part of the DBC fracas, she admitted to being bitch-slapped into stupid submission by DBC leaders, so it ain't like Dianrez knows what "ethics" means.

I am being literal, too.

HaHa!

:o)

Paotie

Karen Mayes said...

Nice blog... showing two different point of views. We all keep forgetting that at least 90% of deaf children come from hearing families.

Hey Paotie, long time no see! ;o)

Anonymous said...

I'm not sure what Dianrez means by moderating her stance. Have you considered that maybe she means self-censorship? If so, that's a sad thing indeed.

Jodi, I've found you to be more reasonable than many of the militant CI parents out there. And I thank you. But that doesn't change the fact that you're still saying that your son isn't ok until he hears. You'll take whatever hearing he gets from surgery, even though it's imperfect. That's so sad, to me.

I know you've become devastated by comments like this in the past, but I can't remain silent. I wish you, and other parents, would recognize that there is no need for this surgery. Your children are amazing the way they were made. They don't need enhancement. Learn what they are trying to teach you. Once you impose your values about hearing and communication on them, they won't know what they have to offer the world. Their lessons will be lost.

I won't be back, unfortunately, to continue this discussion because I know I'm going to get blasted by others, and I don't have the time nor the energy.

I don't mean to upset you, but this had to be said.

Respectfully yours.

Melissa said...

Anonymous,

Words like "broken" are yours, not those of CI parents. I have never said nor have I ever met a parent of a CI child who has referred to our children as "broken." The fact remains that this is a hearing world. A child who only learns to communicate in sign language is going to be at a tremendous disadvantage in navigating this world unless he/she lives in an area or was born into a family rife with signing deaf members. This is not the case for most deaf children. We are not "fixing" our children but are, instead, providing them with greater opportunities in life. They can always learn to sign, but they cannot always learn to hear and speak. Their is a very narrow window in early childhood for that option.

You are also completely ignoring the words of the older deaf children like Rachel who are telling you themselves in their own words that they are very happy and very grateful for having been raised to easily be a part of the hearing world. You are living in the past speaking of your parents. What they grew up with is not the reality of today. Why don't you visit a CI convention, Auditory-Verbal center, etc. and see for yourself before making pronouncements based on very dated technology, experiences, etc.

Jodi Cutler Del Dottore said...

Dear Anon,
I found your comment interesting, not the least bit obnoxious and I am not at all devastated.
We can all sit here and think about what ifs...what if we decided not to provide amplification for my child's hearing loss?
I am certain that I would have taken on the world and most of his class would have learned some type of sign language to be able to communicate with him. Perhaps I would be on the other side of the fence drinking a glass of Morellino di Scansano right there with ya.
But.
I didn't choose that road for my child. I chose to provide him with amplification and this is our story.
I am a parent advocate just here to tell our story in the hope that it will help others looking for help and open the minds of a few more individuals balancing themselves on that fence.
Thanks and please come again,
Jodi
PS. Hi Karen and Paotie!

mishkazena said...

I agree with Anon. It's refreshing to meet a parent of a oral c.i. user, who is not prejudiced and that is you, Jodi. :) You are always willing to hear the other side and try to understand their perspective, just like I do.

Dianrez brings up excellent points. However, I can understand the desires of the hearing parents for their children to hear. My mother had the same desires. To them, hearing has many positive aspects and they want to share the same joy with their children. I am personally fine being Deaf and in fact, had turned down the offer of a free C.I. surgery few years ago. The desire to hear isn't there for me, in fact it's the opposite. I rather not hear as I have a disorder, called recruitment, that makes hearing sounds acutely painful. However, I do have some friends who have gone ahead and got their cochlear implants, in their 40's and so far they love it, even though some may not understand speech.

However, Deaf people who don't have the ability to understand speech do have rich experiences. Deaf Culture, with its beautiful language, is a wonderful adaption for these people.

It all boils down to one's societal values. There are no right or wrong answers.The politicalization of cochlear implants are inevitable between two different cultures, I guess, but ...... sigh... we sure would get along a lot better if the topic isn't so polarizing.

I don't know if you are willing to do this, Jodi. But are you game to have your son share his experiences with his cochlear implant, including how he feels about it? It is obvious that you feel it had benefited him tremendously, which I am sure. It would be interesting for the Deaf people to hear directly from him. But since that means a loss of privacy for your son, I don't know if you are willing to do that or not.

Jodi Cutler Del Dottore said...

Mishka,
Write the questions you would like answered and I'll have him answer them. Jodi

Jodi Cutler Del Dottore said...

I'd do a video, but I still can't figure out how to cc it. I can't even download photos to facebook. I'm a lost cause *smile*
but
I did manage to create two brochures. lol

Val said...

Let's just say I was a Deaf parent who had a hearing child instead of the other way around.
My child has ears that work, I do not, I've chosen to be unaided. Is it natural for me to teach a language I don't know? a language that I can't possibly master because they were born hearing and I was not. They respond to sounds, that I can't reinforce with the same reactions. Do I move forward with the unfamiliar, trying to use my voice or do nothing...just wait and see? Or do I teach what I know, what is natural for me and my family so they are getting some language input, some reinforcement? Can I possibly teach this hearing child how to rely on vision and see cars approaching or will he always hear them first?
Now the reality is this: I'm hearing and my child is deaf. With proper amplification my child had speech access as an infant. Do I reinforce what comes as natural communication between a hearing mother and child...do we swap coos? do I babytalk with the high pitch contrasted with a low pitch" do I give that verbal feedback of "uh,oh" when they drop something? or do I run over in front of them so they can see me sign "uh,oh"? We reinforce our kids with what is natural to us. For most hearing parents, that's verbal responses. For some that are Deaf, it's a sign. I'm not trying to force you to believe you need to give verbal responses to your hearing children when that isn't natural for you. So lets be really careful about judging the hearing parents who do not sign.

and p.s. We tried signing with our deaf son, he proved to us...he WAS NOT going to sign anything! Do you know how disappointed I was that he wasn't interested. I was crushed, we needed communication, we needed it fast, everyone was headed for a state of frustration.He quit hearing with his hearing aids but he received his cochlear implant at three and a half. In one year he mastered spoken language and graduated all speech therapy. He entered school, a happy five year old boy,who a year prior a doctor had commented that "he has obvious delays, I don't know if it's enough to consider him retarded or not" to a child who is now doing GIFTED materials in his mainstream school(2nd grade). So did we make the wrong decision? When he gets older and is able to understand more, I'm sure he'll speak for himself just like Rachel. We all make our decisions based on what works in our family. This was our path, it worked and worked well. It doesn't mean we didn't try other methods. He loves to hear and speak. He's a happy kid who loves to run and play.
He has the ability to the hear cars approaching around the corner even when they aren't visible. For safety alone, we as parents appreciate that. He hears their horns honk or their loud engines, he (as a kid) enjoys that.

Anonymous said...

Just one question, Jodi...do
you know sign language? If not, why not learn?

Anonymous said...

Mishkazena,

Ah, I remember you on Gally-L. You asked questions about Deaf Culture and were still not sure about it even though you graduated from Gally and taught Biology at Gally. From your msg, I see you as person who desires to be a hearing person. You now ask Jodi's son Jordan to answer questions about his CI the way you asked Rachel and her mother Melissa on your blogsite last winter.

Shaking head

Anonymous said...

It's getting old, Jodi.

It's getting the same story over and over in years ahead......

We shall see what happens in 10-20 years from now.....

Ciao,

White Ghost

mishkazena said...

Hey there, Shaking Head.

Please do take the time to reread my statements here carefully. It's obvious you haven't.

FYI, life doesn't exist only in blacks and whites, but includes many different shades of gray. That's what makes life so interesting: the diversity of people. People who cannot see these shades of gray miss out a lot on life.

Just because I want to hear different journeys of other deaf people, including oral C.I. users doesn't mean I want to be hearing. @ @ I'm very much a part of Deaf Culture whether you like it or not.

That's equivalent to making this kind of statement: A hearing person doing stories on deaf people is a wannabe deaf? A black person writing about white culture is a white wannabe? A straight person reporting on gay people is a wannabe gay? This shows logical reasoning....not!!

This is an excellent way to find out the real facts first handed. One knows there are a lot of misinformation out there, on both sides. Apparently many people are not interested in getting the truth. Perhaps you are one of these people. Hmm?

Anonymous said...

If I may add one more point of view...

My 3-year-old son was born with Auditory Neuropathy/Auditory Dyssynchrony. The structures of his ears are all formed correctly and work perfectly. However, the nerves that carry signals to his brain have responses that are dyssynchronous, so the signal is not received correctly. Some people with AN/AD, including my son, only have mild hearing loss, but much of what they hear is static. It's like listening to a radio that's starting to lose the station's signal - the music comes in and out, sometimes clear, sometimes not. How would you like to live life hearing that - getting bits and pieces of what's going on around you, or sometimes a constant static that you can't turn off? Cochlear implants are a wonderul option for these kids.

Val - I agree with you, and it made me so happy to read about your son. We tried sign language, but my son started communicating verbally so we stopped. He was implanted a month ago and activated last week. I'm thrilled that we have the technology to provide him the opportunity to fully understand the world around him.

Jodi - On a side note, my husband is from Italy (Caserta, near Naples) and would LOVE to move there. I like the idea too, but I don't think I could ever bring myself to do it...

Regards,
L

Jodi Cutler Del Dottore said...

Dear Anon,
I do not know sign language neither ASL nor LIS. I HAVE TRIED TO FIND A TEACHER UNSUCCESSFULLY. But, I won't give up. Come again, Jodi

Jodi Cutler Del Dottore said...

Val...idem.
White Ghost: Ciao, it's been a while.
L...thank you for sharing your story, if you decide to consider moving to Italy, and have any questions contact me at jodi@rallycaps.net
Mishka, two hours ago on the CI CIRCLE I made the same comment black-white-gray...kind of scares me *smile*
Thank you for your comments...Jodi

Karen Putz / DeafMom said...

On every journey, there's always going to be the "what ifs," or the "Monday morning quarterbacking," as Henry Kisor says.

I've had many opportunities to meet a wide variety of deaf and hard of hearing children from all walks of life, as well as deaf and hard of hearing adults and there's one thing I've learned: you'll find success stories surrounding every communication methodology and every piece of technology. You'll also find the opposite as well. The bottom line continues to always be the same thing: give your child the ability to translate his thoughts into language and he'll use language to communicate.

mishkazena said...

Jodi, the black and white thinking scares me, too.

Karen, this is very true. Since the needs of every deaf child are different, the commuication methodology needs to be diversified, too.

Jodi Cutler Del Dottore said...

Putz...you are such a wise soul...what the hell took you so long to get here!!! *smile* hugs, Jodi

faceme said...

Jodi-- I loved the way you answered these questions. None of us can ever assume to know what's best for other families, or other peoples' children. Beyond taking care of the most basic needs-- love, food, shelter, it's a free-for-all. What works well for some doesn't work for others.

Do CODA's feel they've missed out on certain cultural aspects of the hearing world because their parents were deaf? Do first generation American children feel they're missing out because their parents don't speak English? How about gay children with heterosexual parents? How many children have perfect childhoods? How many parents know exactly what they're doing in any given situation?

Truth is, most of us are flying by the seat of our pants doing the best we can. Life isn't perfect. Children are amazingly resiliant.

Dianrez said...

I like how this thread is progressing...give the child credit for making the most of what he is given. I also vote for filling his basket with as many tools as he can use. Cheers all!

Val said...

oh and Jodi, Gage thanks you for the ACDC!! **grin**

mishkazena said...

Faceme, the first generation immigrant children and CODA kids are truly bicultural and bilingual. They don't miss the language and culture outside of the immediate family. They are already awashed in the culture via their neighborhood and the community, through the mass media and educational systems.

Amy said...

The fact that she believes that some parents go merrily on their way and dismiss the kinds of questions which she discusses is silly. I have met many, many parents of implanted kids. I only really remember one who was pretty uninformed and uneducated, and even she was trying to figure things out. The majority of parents think, ponder and research things, and then do it some more.

Jodi was right about unexplored potention: without giving cochlear implants a chance, we parents would be faced with unexplored potential. How devastating for a child to grow and know that 1 in 5 senses was tossed out the window in favor of a culture which his family doesn't even belong to? That he could have conversed easily with his siblings, but now is relegated to conversing with great difficulty with most people who do have 5 senses but don't speak his language.

Deaf adults may know a lot about deafness, but they do not hold the key to our understanding of our own precious children. We know them, their interests, their needs and we nurse them into adulthood hoping that they can do everything that they want to do.

A different method of hearing is NOT just as good... any more than being a speaker of Russian would be just as good as speaking Chinese in China. The language of the culture around a child is the most valuable.