Some Ethical Dimensions of Cochlear Implantation for Deaf Children and Their Families

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Link to full article. Some Ethical Dimensions of Cochlear Implantation for Deaf Children and Their Families -- Hyde and Power 11 (1): 102 -- The Journal of Deaf Studies and Deaf Education

Some Ethical Dimensions of Cochlear Implantation for Deaf Children and Their Families
Merv Hyde and Des Power
Griffith University

A major source of controversy between Deaf people and those who support a "social/cultural" view of Deafness as "a life to be lived" and those who see deafness within a "medical model" as a "condition to be cured" has been over the cochlear implantation of young deaf children. Recent research has shown that there are noticeable inequities in access to such procedures in western countries; inequities that give rise to the need for informed public policy discussions. It has also found that parents of newly diagnosed deaf children are not provided with access to all the possibilities for their children—including that of a "Deaf life." How this information can be provided to parents and the public via widespread discussions in the media and elsewhere and involving Deaf people in the implantation counseling process is an issue that needs to be addressed by those responsible for implantation programs.

Correspondence should be sent to Merv Hyde, Centre for Applied Studies in Deafness, Gold Coast Campus, Griffith University, PMB 50, Gold Coast Mail Centre, Queensland 9726, Australia (e-mail: m.hyde@griffith.edu.au).

Received May 22, 2005; revised September 9, 2005; accepted September 12, 2005
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First of all, education, available information should be good to make a decision.
Second, the decision should NOT depent on one's income, or perhaps better said... the decision NOT to operate should not be made due to the lack of funding.
In this, the government has the leading role.
They have the capability to make sure sufficient information is provided, that the correct courses (ASL, Cued Speech) are started to start communication as early as possible, and they should take the financial burden of whatever decision.
In Sweden this works very well. Also in Norway the government is very active in putting all available resources in to play, AND picking up the tab.

In the "wonderful" USA, income determines a huge part of who does, and who does not "get" CI. When the choice is made not to have CI because one cannot afford it - that's a sad reflection of society.
 
It's amazing how things are different througout the world. It would be nice if the US would take notice of programs that work in other coutries and adapt them here. Politics!
 
And, when parents of newly diagnosed children are not provided with all tof the information enabling them to make a truly informed choice, it is an even sadder statement of the nature of the social situation.
 
jillio said:
And, when parents of newly diagnosed children are not provided with all tof the information enabling them to make a truly informed choice, it is an even sadder statement of the nature of the social situation.
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Agreed!!
 
CI in Sudan.... doubtful

The need for Americans and most non-third world countries to become ethnocentric is amazing... I am trying to picture a family in Sudan arguing the ethics of CI... considering they usually throw children away that are Deaf because it's considered to be evil.. as if the child is cursed...
Even if the "you're the devil" attitude wasn't present..families are just trying to stay safe from LRA..(you would not believe the stories from those that survive..)

I wonder how much money COULD be sent to Sudan to help support Deaf orphans....if people chose to send their money there rather then get an implant...

hmmm
 
Crystal71 said:
The need for Americans and most non-third world countries to become ethnocentric is amazing... I am trying to picture a family in Sudan arguing the ethics of CI... considering they usually throw children away that are Deaf because it's considered to be evil.. as if the child is cursed...
Even if the "you're the devil" attitude wasn't present..families are just trying to stay safe from LRA..(you would not believe the stories from those that survive..)

I wonder how much money COULD be sent to Sudan to help support Deaf orphans....if people chose to send their money there rather then get an implant...

hmmm
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I didn't pay for an implant out of my own money, but the government paid for it in the hope that in the long term, their social costs will be lower. So that is a hypothetical argument.

Do you do anything personally to support the third world children? If you are interested, I highly recommend sponsorship programs run by organisations such as World Vision. They send you photos and updates on their progress with schooling and learning local crafts and skills. It's really good. There was one child we sponsored who sadly who died of a measles outbreak, which really made me feel the reality of the fact that the world is very inequitable. But you personally can make a difference. It might be small on the scale of things but if there are lots of small differences they will add up.

Here is a link if anyone is interested in pursuing it further:
World Vision International Home
 
Here's another link if people are interested in helping deaf children in different parts of the world.

Pair brings gift of hope and hearing to Vietnamese orphanage

They are looking for donations of hearing aid equipment Vietnamese deaf children who live in an orphanage. The story is an interesting read. I was interested that Vietnamese sign language is not that disimilar to ASL due to the fact that they were both influenced by the French.

I wonder how many deaf people from first world nations travel the world like that to assist with teaching deaf children sign language or to provide positive role models? Have there been any accounts on AD of people who have done this?
 
jillio said:
And, when parents of newly diagnosed children are not provided with all tof the information enabling them to make a truly informed choice, it is an even sadder statement of the nature of the social situation.
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Agreed, too!
 
jillio said:
And, when parents of newly diagnosed children are not provided with all tof the information enabling them to make a truly informed choice, it is an even sadder statement of the nature of the social situation.
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I agree with you 100%
 
I do think that the USA needs to so something to make sure parents know all the options. My son received his implant when he was 3 years old back then I wasn't working so we didn't have any money. My son was the first in our area get his implant paid for by the state. I know that a couple of my students, their implants were paid for by the state. Our family did know about all the options but we do live in very big city.
With early identification I would think there was some way of getting parents all the information. Maybe they could develop a team that would go visit parents and tell them about oral education, signing, ASL, Deaf Culture, and CUED speech.
 
jackiesolorzano said:
I do think that the USA needs to so something to make sure parents know all the options. My son received his implant when he was 3 years old back then I wasn't working so we didn't have any money. My son was the first in our area get his implant paid for by the state. I know that a couple of my students, their implants were paid for by the state. Our family did know about all the options but we do live in very big city.
With early identification I would think there was some way of getting parents all the information. Maybe they could develop a team that would go visit parents and tell them about oral education, signing, ASL, Deaf Culture, and CUED speech.
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We really weren't talking about the different ways one could find financing for CI, although I suppose that is part of the package of info. Rather, when discussing all of the info, I was referring to social support that would put the parent in contact with not just audis and implant teams, but the Deaf community through perhaps a mentoring program, instruction in ASL for the family, contact information for deaf schools, self contained classrooms, early intervention programs, and accurate information regarding deafness rather than simply the medicalized perspective.
 
jillio said:
We really weren't talking about the different ways one could find financing for CI, although I suppose that is part of the package of info. Rather, when discussing all of the info, I was referring to social support that would put the parent in contact with not just audis and implant teams, but the Deaf community through perhaps a mentoring program, instruction in ASL for the family, contact information for deaf schools, self contained classrooms, early intervention programs, and accurate information regarding deafness rather than simply the medicalized perspective.
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That would be great. What would be helpful is if the Deaf community organized and advocated for this or put together a grass roots effort that sought out parents going through the screening process and at minimum mailed them information.
 
rockdrummer said:
That would be great. What would be helpful is if the Deaf community organized and advocated for this or put together a grass roots effort that sought out parents going through the screening process and at minimum mailed them information.
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Originally Posted by jillio
We really weren't talking about the different ways one could find financing for CI, although I suppose that is part of the package of info. Rather, when discussing all of the info, I was referring to social support that would put the parent in contact with not just audis and implant teams, but the Deaf community through perhaps a mentoring program, instruction in ASL for the family, contact information for deaf schools, self contained classrooms, early intervention programs, and accurate information regarding deafness rather than simply the medicalized perspective.

I agree completely with both of you. I think parents should have the information as Jillo says from the medicalized perspective but I also think that parents should have the information from the Deaf culture side. And maybe a grass root appraoch would be the way to go. And maybe someone here can come up with a way to do this.
Although I have taken the oral approach with children, I know it is not the only approach or the best approach for all deaf children. I know that I have met some very successful signing only children.
What I do know is that parents need all the information so that they can make an informed educated decision.
 
jackiesolorzano said:
Originally Posted by jillio
We really weren't talking about the different ways one could find financing for CI, although I suppose that is part of the package of info. Rather, when discussing all of the info, I was referring to social support that would put the parent in contact with not just audis and implant teams, but the Deaf community through perhaps a mentoring program, instruction in ASL for the family, contact information for deaf schools, self contained classrooms, early intervention programs, and accurate information regarding deafness rather than simply the medicalized perspective.

I agree completely with both of you. I think parents should have the information as Jillo says from the medicalized perspective but I also think that parents should have the information from the Deaf culture side. And maybe a grass root appraoch would be the way to go. And maybe someone here can come up with a way to do this.
Although I have taken the oral approach with children, I know it is not the only approach or the best approach for all deaf children. I know that I have met some very successful signing only children.
What I do know is that parents need all the information so that they can make an informed educated decision.
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True...there is a team of CI consultants visiting our school soon so we will get a learning experience from them. I am looking forward to it. Maybe I can learn some more and hopefully they can learn from us. From my understanding these are some serious names in the CI community so it is a postive thing for them to come and hopefully we can help and learn from each other.
 
From somebody who grew up as hearing impaired in hearing world point of view, I think it's best to receive early implantation and all the therapy that is needed afterwards to receive the best possible benefits of having CI,
and to be fully immersed in a deaf culture as well.

because to be able to hear and speak is not only very useful (and provides estethic pleasures such as music) and enables a hearing impaired person to be more independent (no absolute need for TTY, captions, interpreters etc) it also helps function better in hearing enviroment.

On the other hand CI is still not able to fully and perfectly restore one's hearing, the level of benefit vary from person to person, and thus the person who is implanted is still hearing impaired, so still needs an enviroment where the communication is easily and FULLY comprehended.
also the emotional support and understanding of people with the same problems and difficulties is very important for a person well being.



Fuzzy
 
Audiofuzzy said:
From somebody who grew up as hearing impaired in hearing world point of view, I think it's best to receive early implantation and all the therapy that is needed afterwards to receive the best possible benefits of having CI,
and to be fully immersed in a deaf culture as well.

because to be able to hear and speak is not only very useful (and provides estethic pleasures such as music) and enables a hearing impaired person to be more independent (no absolute need for TTY, captions, interpreters etc) it also helps function better in hearing enviroment.

On the other hand CI is still not able to fully and perfectly restore one's hearing, the level of benefit vary from person to person, and thus the person who is implanted is still hearing impaired, so still needs an enviroment where the communication is easily and FULLY comprehended.
also the emotional support and understanding of people with the same problems and difficulties is very important for a person well being.



Fuzzy
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I agree..

I read an article posted here on AD last year about a boy who got a CI and relied heavily on it. Someone broke into their home and stole his processor thinking it was something else. For like a month or so, the boy couldnt hear anything therefore he was unable to communicate at all. There was a problem with getting replacements..cant remember what. He had to stay home from school due to not being able to communicate nor be able to understand the lessons and he didnt know any ASL so a terp would be out of the question. According to the parents, the boy became emotionally traumatic from the experience and withdrew into himself. It is nice to have the "freedom" but at the same time, it would be nice to have ASL too.
I would never forget that article cuz it really was sad.
 
jackiesolorzano said:
Originally Posted by jillio
We really weren't talking about the different ways one could find financing for CI, although I suppose that is part of the package of info. Rather, when discussing all of the info, I was referring to social support that would put the parent in contact with not just audis and implant teams, but the Deaf community through perhaps a mentoring program, instruction in ASL for the family, contact information for deaf schools, self contained classrooms, early intervention programs, and accurate information regarding deafness rather than simply the medicalized perspective.

I agree completely with both of you. I think parents should have the information as Jillo says from the medicalized perspective but I also think that parents should have the information from the Deaf culture side. And maybe a grass root appraoch would be the way to go. And maybe someone here can come up with a way to do this.
Although I have taken the oral approach with children, I know it is not the only approach or the best approach for all deaf children. I know that I have met some very successful signing only children.
What I do know is that parents need all the information so that they can make an informed educated decision.
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Absolutely. Sweden actually has a very comprehensive model that the U.S. could use to formulate a program.
 
rockdrummer said:
That would be great. What would be helpful is if the Deaf community organized and advocated for this or put together a grass roots effort that sought out parents going through the screening process and at minimum mailed them information.
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Absolutely. Such an effort would definately require the input, the cooperation, and the assistance of the Deaf/deaf community. But I think that it is also going to require a bit of social revision in our perspective as a whole society. We are focused on the medical aspect of everything here in the U.S.. We are moving toward a more holistic approach, but there are still many practitioners and people in general who subsribe to the medicalized view of anything that falls slightly outside what the majority of society considers the norm. Overweight....get stomach stapling. Nose too big....get rhinoplasty. Aging....get a face lift. Got a cold.....take a pill. We are far too symptom focused, and are unwilling to see anything other than the quick fix. We look too much at the pathology, and not enough at the person as a whole.

Okay, done preaching now!:giggle:
 
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