Two girls with CI...

[Audiofuzzy]

An interesting, touching story I found while googling... thought I might show it to you. Long, but worth reading.

Cochlear Implant Online

Fuzzy

 

[highlands]

thanks for the link

 

[shel90]

Touching story but a few things that bothered me.

The parents's view of ASL as a last resort therefore playing Russian Roulette with their children's language development.

The girls' delays in language.

The parents view of Deaf culture as a culture that limits opportunites by saying that they want to give their children all the opportunities the hearing world has to offer. Fine, but no harm in exposing them to Deaf culture as well:

We were living in Boston at the time, which was a bastion of Deaf culture. Thus, oral programs were not plentiful, but we very much wanted Rachel to be able to take advantage of all the opportunities the hearing world had to offer.

ASL could have simply prevented this problem if she had been exposed to it since her diagnosis. That is why it is VERY important that all deaf children have exposure to ASL or other sign languages:
What followed were six more years of hard work for us and for Rachel, trying to close the gap between her chronological age and her language age. Because she had had no auditory exposure to spoken language until almost the age of three, closing that gap was going to be difficult and would take a long time. When Rachel finally graduated from AVCA at the age of ten, she had caught up in all areas except vocabulary and auditory memory.

Why is sign seen as a "crutch"? Deafdyke is so right..parents see it as a crutch if oral language doesnt work out. That's playing with children's language development. Do BOTH!!!
We were faced with a difficult decision at that point. We could attempt to keep Rachel oral, using visual and vibrotactile cues, or turn to sign.

Another comment that bothered me. Deaf children who cant hear STILL go to school! I didnt like this comment at all:
Rachel’s tenacity during this period amazed us. We left the audiologist, and I expected to take her home, but she insisted on going to school even though she would be totally deaf.
To me that shows they depend on the CI too much..if the CI fails, Rachel cant go to school? Such balony!


This is why deaf children must learn ASL cuz CIs do fail and I have seen evidence of that with our students but fortunately for them, it is not a problem cuz they dont miss out on learning:
I don’t know if it’s because I was anxious already having experienced one CI failure, but I had a bad feeling about this as I rushed to her school

To us, after having Rachel experience two CI failures in less than a year, a “spare ear” was another strong plus

The mother described how her daughter was in so much pain after the surgery. At least Rachel can express herself and tell her mother where the pain is but what about babies? That is why I am not comfortable with the idea of babies getting implanted. Never know.

I applaud the mother for her hard work but her story shows why it is important for deaf children to have both languages..spoken and sign languages. This is why so many kids end up delayed and they are not as fortunate to have parents who can afford to go back and forth to different implant centers or different AVT cneters. I think all deaf ed programs should include both and do away with oral-only programs so the chidlren can have a rich linguistic environment to blossom in whether their CIs are working or not working at times. No interruption to their educational progress.

No bashing nor calling me negative but u have to remember that I deal with so many deaf children who are so delayed cuz of that view of using sign language as a last resort and yes, it makes me angry. This story just proves all the problems and issues with the oral-only approach.

 

[deafdyke]

Oh ditto.
This mom is the PErFECT example of an audist parent. As well as a parent who has bought into the myth that it's the "speshal" things about the disabilty that is what makes disabilty conditions "unabling" Why is there such a stigma about Sign?

When Rachel finally graduated from AVCA at the age of ten, she had caught up in all areas except vocabulary and auditory memory.

How many areas are there?
What're her dhh children's verbal IQs? Vocabulary seems to be a pretty important area in the English language. Guess she won't be scoring wicked high on the verbal parts of the SATs.
It just seems that this "story" is basicly almost selling AVT/CIs.
And yes, dependancy on technology is dangerous. Her daughter cannot function without her CI. Imagine if ASL fluency was promoted as "your kid can function both WITH and WITHOUT hearing devices!
In an age when wicked high health care costs are out of control and when even very healthy people cannot get good health insurance, doing oral only is an act of asshatery!

 

[Audiofuzzy]

Yup. This is very interesting story, even I am troubled byb some decisions and POV the parents undertook here.
However, let's not get fixated on one side only. For example, while it's true that it would be better (for various reasons) to include ASl, please pay attention to what motivated the mother to chose oral approach only:

We were living in Boston at the time, which was a bastion of Deaf culture. Thus, oral programs were not plentiful, but we very much wanted Rachel to be able to take advantage of all the opportunities the hearing world had to offer.

The mother wish was to have her daughters to take advantages of hearing world, which in itself is not bad.
The problem was for her there were no satisfactory programs available in the deaf community.
Perhaps this is something that should be looked into from the deaf side?

Perhaps if the deaf community was able to offer what hearing parents are looking for, more of them would be interested in it?
It is easy to say - "do not bash the deaf ways, do not bash ASL"- but is the deaf community also doing everything to be attractive for hearing?


Fuzzy

 

[rick48]

Fuzzy,

This falls into the "Small World" category. We have known Melissa, Rachel and the Chaikoffs for nearly 20 years. Rachel and my daughter are the same age, my daughter was implanted a few months before Rachel, both were implanted at NYU and have had the opportunity to work with Bill Shapiro, a true professional audiologist and friend.

Melissa has been a tireless advocate for the rights of parents to be able to choose cochlear implants for their children and we both were very active in the cochlear implant community.

Interestingly, although we e-mail now infrequently, we ran into each other at the Savannah College of Art and Design as our daughters were doing a campus visit there a few years ago. As it turned out, we were staying at the same hotel while visiting SCAD.
Rick

 

[rick48]

Oh ditto.
Guess she won't be scoring wicked high on the verbal parts of the SATs.

Well actually she did and without even using any of those "wicked cool" toys you never name that increase your SAT scores but you would not know that because you did not read it in some book written by some woman quoting this guy who read one time about a study.....

Burnt!

 

[Bear]

Shel,

In no way am I excusing the parents, but you also have to remember, that a good percentage *cant quote exact because I have no research backing it up* but I will say a good percentage of hearing parents of deaf children have no prior knowledge of deaf.

When researching about deafness most of the time the CI is brought up, I can't say all doctors push the oral-only approach but Im willing to bet most don't educate about signs and that there even is a deaf culture.

Before judging the parent I try to look at their knowledge of the deaf, before the age of the internet, there was hardly any information about the deaf. And usually only those connected to the deaf somehow, were the only ones that knew where to meet others and such.

You also need to take into consideration that many of our generation, who is still having kids, were raised by a generation that associated *deaf and dumb*. So they may not know any better. Until we as a deaf community get involved and make sign more known and the deaf culture more known through doctors and hospitals then you will continue to see more of this attitude.

At least that's my opinion for whatever it's worth.

 

[deafdyke]

Audiofuzzy, that is a good point. It does seem that there are folks who aren't nessarily hostile to Deaf culture and ASL, but they just think that TC programs don't concentrate enough on speech. I wish so badly that oral programs and TC programs could collaborate together to equipt kids with a full toolbox.
Actually Rick, according to Journey Into the Deaf World dhh kids tend to have (on average) LOWER verbal IQs then hearing kids. That includes ORAL kids.
I will look up and quote the exact page and quote, so you can't pick on me about that any more. It's just that I read so much stuff that its hard to remember exactly where I picked it up.
Oh, and there probaly have always been oral kids who do well on verbal mastery tests. It doesn't mean that lots of kids do. You have to remember that the families and dhh kids you've had interaction with, tend to represent a very elite type of demographic. I mean how many families where kids didn't pick up oral skills that well, do you know? It's very complicated, and "sucess" with oral only has a lot more to do with demographics then it appears at first glance.

 

[shel90]

Shel,

In no way am I excusing the parents, but you also have to remember, that a good percentage *cant quote exact because I have no research backing it up* but I will say a good percentage of hearing parents of deaf children have no prior knowledge of deaf.

When researching about deafness most of the time the CI is brought up, I can't say all doctors push the oral-only approach but Im willing to bet most don't educate about signs and that there even is a deaf culture.

Before judging the parent I try to look at their knowledge of the deaf, before the age of the internet, there was hardly any information about the deaf. And usually only those connected to the deaf somehow, were the only ones that knew where to meet others and such.

You also need to take into consideration that many of our generation, who is still having kids, were raised by a generation that associated *deaf and dumb*. So they may not know any better. Until we as a deaf community get involved and make sign more known and the deaf culture more known through doctors and hospitals then you will continue to see more of this attitude.

At least that's my opinion for whatever it's worth.

In my experience with working with parents of implanted children who have been referred to our school, I was told by them that the doctors werent nuetral about ASL. They told me how the doctors made it sound like if their children learn ASL, they will never be able to get full benefits from their CIs. Of course, I will believe them cuz they were devastated when their children fell so far behind and having to live with the regret of not exposing their children to a visual language when it was critical. If it is so true that ASL interferes with the child's ability to use it fully then why do I have a student with a CI who had been a student at our school since she was a baby who can easily go from spoken to sign languages? (not asking u but just that view is so incorrect).

The doctors need to stop giving that misconception about ASL. Heck even one parent told me that she was told it was either get a CI or go the ASL route. She was shocked to see that both can be done when her child first came to our school.

 

[Bear]

Audiofuzzy, that is a good point. It does seem that there are folks who aren't nessarily hostile to Deaf culture and ASL, but they just think that TC programs don't concentrate enough on speech. I wish so badly that oral programs and TC programs could collaborate together to equipt kids with a full toolbox.
Actually Rick, according to Journey Into the Deaf World dhh kids tend to have (on average) LOWER verbal IQs then hearing kids. That includes ORAL kids.
I will look up and quote the exact page and quote, so you can't pick on me about that any more. It's just that I read so much stuff that its hard to remember exactly where I picked it up.
Oh, and there probaly have always been oral kids who do well on verbal mastery tests. It doesn't mean that lots of kids do. You have to remember that the families and dhh kids you've had interaction with, tend to represent a very elite type of demographic. I mean how many families where kids didn't pick up oral skills that well, do you know? It's very complicated, and "sucess" with oral only has a lot more to do with demographics then it appears at first glance.

Jillio,

A suggestion for ya hon. that may or may not work for you. if you read it in a magazine then start a notebook or a notepad on your computer or offline,that tells ya what you read and where.

That way you can always easily locate the source and provide links without driving yourself nuts.

Just a suggestion.

 

[Kaitin]

Actually Rick, according to Journey Into the Deaf World dhh kids tend to have (on average) LOWER verbal IQs then hearing kids. That includes ORAL kids.
I will look up and quote the exact page and quote, so you can't pick on me about that any more. It's just that I read so much stuff that its hard to remember exactly where I picked it up.
Oh, and there probaly have always been oral kids who do well on verbal mastery tests. It doesn't mean that lots of kids do. You have to remember that the families and dhh kids you've had interaction with, tend to represent a very elite type of demographic. I mean how many families where kids didn't pick up oral skills that well, do you know? It's very complicated, and "sucess" with oral only has a lot more to do with demographics then it appears at first glance.

Agree, DeafDyke. All the issues are very complicated. Also CI in young children is a hot topic of course. So I don't understand posting in a website like AllDEAF in a thread about CI and wanting to "burn" another person. Even if the original quote is with people the poster knows. And happiness about "burned" someone seems rude and also counterproductive - for me deciding about CI I hate reading such posts.

I read more about deaf kids and language and mental development. Many articles state that many factors influence kid's development and sign can help. I wonder if hearing parents of a deaf/HoH child think about all these AND learn about deaf culture before chosing CI. If not, they do not make "informed decisions" IMO.


From Journal of Deaf Studies and Deaf Education 2:1 1997: A Study of the Relationship Between American Sign Language and English Literacy

This article presents the findings of a study of the relationship between American Sign Language (ASL) skills and English literacy among 160 deaf children. Using a specially designed test of ASL to determine three levels of ASL ability, we found that deaf children who attained the higher two levels significantly outperformed children in the lowest ASL ability level in English literacy, regardless of age and IQ. Furthermore, although deaf children with deaf mothers outperformed deaf children of hearing mothers in both ASL and English literacy, when ASL level was held constant, there was no difference between these two groups, except in the lowest level of ASL ability. The implication of this research is straightforward and powerful: Deaf children's learning of English appears to benefit from the acquisition of even a moderate fluency in ASL.

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Journal Speech Hear Res. 1977 Mar;20(1):95-107: Influence of certain language and communication environments in early childhood on the development of language in deaf individuals.

Four groups of deaf subjects between the age of 10-0 and 18-11 years were tested, employing the Test of Syntactic Ability, and the language subtests of the Stanford Achievement Test, in a study of the influence of early language and communication environment on later syntactic language ability. The groups, 18 subjects in each, were dichotomized by whether the parents were hearing or deaf and further subgrouped by the language ability of the parents if the parents were deaf, and by the amount and intensity of oral preschool training provided by the parents if the parents were hearing. The groups were labeled by the type of language used with them in infancy and early childhood: manual English, average manual, intensive oral, and average oral. Results showed significant superiority of the manual English group over the two oral groups on five of the six major test structures of the Test of Syntactic Ability. On the Stanford Achievement Test, the manual English group performed significantly better than the other three groups on all four subtests. The two manual groups performed significantly better than the two oral groups on every test measure employed.


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From Developmental Psychology, v43 n5 p1156-1169 Sep 2007: Language Access and Theory of Mind Reasoning: Evidence from Deaf Children in Bilingual and Oralist Environments
This investigation examined whether access to sign language as a medium for instruction influences theory of mind (ToM) reasoning in deaf children with similar home language environments. Experiment 1 involved 97 deaf Italian children ages 4-12 years: 56 were from deaf families and had LIS (Italian Sign Language) as their native language, and 41 had acquired LIS as late signers following contact with signers outside their hearing families. Children receiving bimodal/bilingual instruction in LIS together with Sign-Supported and spoken Italian significantly outperformed children in oralist schools in which communication was in Italian and often relied on lipreading. Experiment 2 involved 61 deaf children in Estonia and Sweden ages 6-16 years. On a wide variety of ToM tasks, bilingually instructed native signers in Estonian Sign Language and spoken Estonian succeeded at a level similar to age-matched hearing children. They outperformed bilingually instructed late signers and native signers attending oralist schools. Particularly for native signers, access to sign language in a bilingual environment may facilitate conversational exchanges that promote the expression of ToM by enabling children to monitor others' mental states effectively.


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From Journal of Deaf Studies and Deaf Education 5:3 2000: The Impact of Sign Language on the Cognitive Development of Deaf Children - The Case of Theories of Mind

The ability to attribute false beliefs (i.e., demonstrate theory of mind) by 155 deaf children between 5 and 8 years of age was compared to that of 39 hearing children ages 4 to 6. The hypotheses under investigation were (1) that linguistic features of sign language could promote the development of theories of mind and (2) that early exposure to language would allow an easier access to these theories. Deaf children were grouped according to their communication mode and the hearing status of their parents. The results obtained in three false belief tasks supported the hypotheses: effective representational abilities were demonstrated by deaf children of deaf parents, whereas those born to hearing parents appeared delayed in that regard, with differences according to their communication mode.

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From Journal of Child Psychology and Psychiatry, Volume 45 Issue 6 Page 1096-1106, September 2004: Theory-of-mind development in oral deaf children with cochlear implants or conventional hearing aids

Methods: A total of 52 children aged 4 to 12 years took a battery of false belief tests of ToM. There were 26 oral deaf children, half with implants and half with hearing aids, evenly divided between oral-only versus sign-plus-oral schools. Comparison groups of age-matched high-functioning children with autism and younger hearing children were also included.
Results: No significant ToM differences emerged between deaf children with implants and those with hearing aids, nor between those in oral-only versus sign-plus-oral schools. Nor did the deaf children perform any better on the ToM tasks than their age peers with autism. Hearing preschoolers scored significantly higher than all other groups. For the deaf and the autistic children, as well as the preschoolers, rate of language development and verbal maturity significantly predicted variability in ToM, over and above chronological age.

Conclusions: The finding that deaf children with cochlear implants are as delayed in ToM development as children with autism and their deaf peers with hearing aids or late sign language highlights the likely significance of peer interaction and early fluent communication with peers and family, whether in sign or in speech, in order to optimally facilitate the growth of social cognition and language.

 

[Bear]

In my experience with working with parents of implanted children who have been referred to our school, I was told by them that the doctors werent nuetral about ASL. They told me how the doctors made it sound like if their children learn ASL, they will never be able to get full benefits from their CIs. Of course, I will believe them cuz they were devastated when their children fell so far behind and having to live with the regret of not exposing their children to a visual language when it was critical. If it is so true that ASL interferes with the child's ability to use it fully then why do I have a student with a CI who had been a student at our school since she was a baby who can easily go from spoken to sign languages? (not asking u but just that view is so incorrect).

The doctors need to stop giving that misconception about ASL. Heck even one parent told me that she was told it was either get a CI or go the ASL route. She was shocked to see that both can be done when her child first came to our school.

Shel,

This is why I say we as ASL users and with CI's need to get together and prove the doctors wrong. The only way we can do this is by somehow getting word out there to have like a meeting or a seminar or something where you could meet these new parents. Try to get the CI center to cooperate?

I really cant speak from a child perspective and from a CI learning Oral speech perspective.

I could however teach the benefits of knowing signs while having a CI.

Maybe it is something we need to really get together on and stand up for in each state.

As for the article stated above, there is another consideration to factor in. It seems like these parents did have knowledge of the whole deaf culture in their area.

The deaf community does not always put on the best face to invite others into it. For example, in some areas the deaf act like if you are not strongly connected to a full deaf family, then they dont wanna give you the time of day. In this type of community, they want to know your whole deaf ancestry and wanna see it. What the hell is that? That would turn alot of people off on joining the deaf community.

Then we have the ASLer's. Anyone that even wants to speak is outcasted by them. You have to support nothing but ASL or they wont talk to you. For someone like me who is oral and asl forget it. They dont take into account for us latened deaf.

Then we have some hardcore Cier's. NOT anyone here mind you. But I have seen it. Those types are like if you dont support the CI, then they want nothing to do with you. They dont want to try to understand that someone may be happy as they are. But at the same time whine because others are against the CI. Maybe their attitude is why. But they dont see that.

Then we have the anti Cier's. NOT anyone here mind you again. But this group refuses to accept anyone with a CI. If you were implanted, forget it dont wanna talk to you. You turned your back on the deaf community. So why dont you keep it that way? They refuse to see that not everyone fits into their nice little box.

Not to mention because we are a small community. The backstabbing, gossiping, and temper tantrums over the smallest thing is more apparent. You notice it more.

Now imagine you are a new parent, slung into a world you pretty much know nothing about. You do your research about the deaf community. You go meet some deaf at say a deaf club. You see all of this going on. What would you decide?

It's not always black and white. Sometimes people go for oral and hearing due to what they see in the deaf communities. They feel their children would be better off in the *majority* of the population because it is so large that the things that go on in our community is not so noticeable.

Also you have to factor in job discrimination. While many of us may have jobs and working. How many of us are in truly good paying jobs?

The hearing population mainly only sees us in jobs like walmart, stocking shelves. Mcdonalds, flipping burgers or cleaning. Many parents see that and worry that their child may be stuck in a dead end low paying job.

They dont really see that there are sucessful deaf adults. So, they feel give my child the ability to hear as much as possible and give them speech and they may not have to face that.

I can understand the concepts behind it. But that doesnt mean I feel they are right.

Maybe it is up to us to show our own community what we are showing others.

 

[Kaitin]

Now imagine you are a new parent, slung into a world you pretty much know nothing about. You do your research about the deaf community. You go meet some deaf at say a deaf club. You see all of this going on. What would you decide?

Do people think many hearing parents go to deaf clubs? Research deaf culture? Learn ASL or some sign? I don't think many audiologist/CI doctors do and then talk about with hearing parents.

An article FROM 2007, from American Journal of Audiology Vol.16 13-28 June 2007. doi:10.1044/1059-0889(2007/003): Cochlear Implants in Young Children: Informed Consent as a Process and Current Practices

Purpose: This study examined the types of information that pediatric cochlear implant (PCI) centers and teams provide to parents of deaf children and the extent to which the informed consent process extends beyond medical issues to include social and cultural aspects. A second purpose was to determine the extent to which centers are applying selected new practices in cochlear implantation: younger age at implantation and bilateral implantation.

Method: A 23-question survey was sent to 445 cochlear implant centers in the United States. Of the 445 centers contacted, 188 (42%) were excluded as ineligible (nonpediatric), 257 (58%) were determined eligible, and 121 (47%) of these completed the survey. Survey topics included characteristics of PCI centers and teams; the role and importance of professionals/consultants; types of medical, educational, Deaf culture, and identity information and perspectives provided to parents; and current practices regarding age of implantation and bilateral implantation.

Results: All of the PCI teams completing the survey presented medical/surgical risks, audiologic information, and variability of communication/educational options; fewer than half (45%) presented Deaf culture and emerging autonomy/identity issues to parents. Most PCI centers felt the optimal age to implant a child was 10–15 months. The majority of PCI centers, regardless of affiliation with a teaching hospital, responded that they rarely or never implanted bilaterally, and few discussed bilateral implants with parents.

Conclusions: Audiologists are the only nonsurgical professionals always represented on the cochlear implant team. In order to best prepare audiologists for this role, graduate audiology programs need to address more extensively the Deaf culture and perspective, as well as genetics of hearing loss. Increased attention to educational audiology and evidence-based research regarding best age to implant and bilateral implantation needs to be included in the discussion with parents. Audiologists play a crucial role in informing parents and coordinating care, and should therefore carefully consider their role in the informed consent process.


Instead probably many audiologist/CI surgeons see deaf as only a "problem" and not deaf culture. If so, how would hearing parents make "informed decision"?

From The Journal of Deaf Studies and Deaf Education 2006 11(1):102-111; doi:10.1093/deafed/enj009: Some Ethical Dimensions of Cochlear Implantation for Deaf Children and Their Families

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.

Risk/Benefit Analysis - Another perspective on the choice that parents face is that a "Deaf life" is a viable and satisfactory one without a cochlear implant, and the promises of "normalization" made by its proponents would be considered unnecessary by many observers. It is reasonable to suggest therefore that the risk/benefit model of informed consent for parents of deaf children should be broadened to include the social, linguistic, and cultural characteristics associated with being Deaf; namely that, in contrast to the perception that there is disadvantage in being deaf, the "viable Deaf life" alternative should be presented to parents. Some have argued that there is a disadvantage to young deaf children in their being directed into a (likely imperfectly accessible) hearing world through implantation and thus not be able to access the rich personal, social, cultural, and linguistic context that membership of the Deaf community could provide. It is argued that parents of deaf children should have such information available if they are truly to be informed about the various futures available to their child (Hintermair & Albertini, 2005Go; Hyde & Power, 2000Go).

In neither of the informed consent procedures that we analyzed was this issue canvassed. The procedures were determined by the medical provider, administered by the medical provider, and final authorization for fitting was managed by the medical provider and, as described above, included only the medical parameters of benefit and risk, not the personal, social, or educational ones. Whereas some implant programs are now including some input from Deaf adults as models of what is possible as a "Deaf" person, it cannot be assumed that parents would change their decision or expectations. Such is the power of the persuasiveness of the cochlear implant proponents and the medical view of deafness as a "condition to be cured."

Audiologists/CI surgeons must give parents information to balance information from CI manufacturers. I don't think they do always.

From Proceedings of the 25th annual ACM international conference on Design of communication: Frozen ecstasy: visualizing hearing in marketing materials for cochlear implants

In this paper, I analyze marketing materials - principally brochures - from two cochlear implant manufacturers. Cochlear implants occupy a central place in the debates over deafness. Is deafness merely a medical condition that prevents deaf people from fully participating in the (hearing) society at large? Or is Deafness (written with a capital D) the moniker of a minority group, one with its own distinct language (e.g. American Sign Language), history, culture, and values, and thus deserving of the same civil rights afforded to other linguistic minorities? Because implants promise to eradicate deafness, they also threaten to undermine the claims of some deaf people to self-realization as members of a linguistic minority group. Not surprisingly, the marketing materials embrace a medical model of deafness as a stigmatizing deficit to be fixed. But they do so by downplaying the implant's uncertainty (i.e. implants to date can not deliver on the promise to cure deafness for all) and by ignoring the contests within the Deaf community over the place of implants in the lives of d/Deaf people.

Yes - hearing parents of a deaf/HoH kid have many struggles. And maybe the parents in original article "did have knowledge of the whole deaf culture in their area." But nothing I read of the article tells me so:

We were living in Boston at the time, which was a bastion of Deaf culture. Thus, oral programs were not plentiful, but we very much wanted Rachel to be able to take advantage of all the opportunities the hearing world had to offer. At the age of three months, Rachel received her first set of hearing aids, body worn aids, which consisted of two boxes with wires running up to button-like earplugs. and then Auditory-Verbal approach". And "we still had time to turn to sign if it didn't work." Then CI even though then even not approved by FDA.

Nothing about deaf clubs, ASL, deaf culture to me. Probably not "informed decision" really.

 

[Bear]

Do people think many hearing parents go to deaf clubs? Research deaf culture? Learn ASL or some sign? I don't think many audiologist/CI doctors do and then talk about with hearing parents.

An article FROM 2007, from American Journal of Audiology Vol.16 13-28 June 2007. doi:10.1044/1059-0889(2007/003): Cochlear Implants in Young Children: Informed Consent as a Process and Current Practices

Purpose: This study examined the types of information that pediatric cochlear implant (PCI) centers and teams provide to parents of deaf children and the extent to which the informed consent process extends beyond medical issues to include social and cultural aspects. A second purpose was to determine the extent to which centers are applying selected new practices in cochlear implantation: younger age at implantation and bilateral implantation.

Method: A 23-question survey was sent to 445 cochlear implant centers in the United States. Of the 445 centers contacted, 188 (42%) were excluded as ineligible (nonpediatric), 257 (58%) were determined eligible, and 121 (47%) of these completed the survey. Survey topics included characteristics of PCI centers and teams; the role and importance of professionals/consultants; types of medical, educational, Deaf culture, and identity information and perspectives provided to parents; and current practices regarding age of implantation and bilateral implantation.

Results: All of the PCI teams completing the survey presented medical/surgical risks, audiologic information, and variability of communication/educational options; fewer than half (45%) presented Deaf culture and emerging autonomy/identity issues to parents. Most PCI centers felt the optimal age to implant a child was 10–15 months. The majority of PCI centers, regardless of affiliation with a teaching hospital, responded that they rarely or never implanted bilaterally, and few discussed bilateral implants with parents.

Conclusions: Audiologists are the only nonsurgical professionals always represented on the cochlear implant team. In order to best prepare audiologists for this role, graduate audiology programs need to address more extensively the Deaf culture and perspective, as well as genetics of hearing loss. Increased attention to educational audiology and evidence-based research regarding best age to implant and bilateral implantation needs to be included in the discussion with parents. Audiologists play a crucial role in informing parents and coordinating care, and should therefore carefully consider their role in the informed consent process.


Instead probably many audiologist/CI surgeons see deaf as only a "problem" and not deaf culture. If so, how would hearing parents make "informed decision"?

From The Journal of Deaf Studies and Deaf Education 2006 11(1):102-111; doi:10.1093/deafed/enj009: Some Ethical Dimensions of Cochlear Implantation for Deaf Children and Their Families

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.

Risk/Benefit Analysis - Another perspective on the choice that parents face is that a "Deaf life" is a viable and satisfactory one without a cochlear implant, and the promises of "normalization" made by its proponents would be considered unnecessary by many observers. It is reasonable to suggest therefore that the risk/benefit model of informed consent for parents of deaf children should be broadened to include the social, linguistic, and cultural characteristics associated with being Deaf; namely that, in contrast to the perception that there is disadvantage in being deaf, the "viable Deaf life" alternative should be presented to parents. Some have argued that there is a disadvantage to young deaf children in their being directed into a (likely imperfectly accessible) hearing world through implantation and thus not be able to access the rich personal, social, cultural, and linguistic context that membership of the Deaf community could provide. It is argued that parents of deaf children should have such information available if they are truly to be informed about the various futures available to their child (Hintermair & Albertini, 2005Go; Hyde & Power, 2000Go).

In neither of the informed consent procedures that we analyzed was this issue canvassed. The procedures were determined by the medical provider, administered by the medical provider, and final authorization for fitting was managed by the medical provider and, as described above, included only the medical parameters of benefit and risk, not the personal, social, or educational ones. Whereas some implant programs are now including some input from Deaf adults as models of what is possible as a "Deaf" person, it cannot be assumed that parents would change their decision or expectations. Such is the power of the persuasiveness of the cochlear implant proponents and the medical view of deafness as a "condition to be cured."

Audiologists/CI surgeons must give parents information to balance information from CI manufacturers. I don't think they do always.

From Proceedings of the 25th annual ACM international conference on Design of communication: Frozen ecstasy: visualizing hearing in marketing materials for cochlear implants

In this paper, I analyze marketing materials - principally brochures - from two cochlear implant manufacturers. Cochlear implants occupy a central place in the debates over deafness. Is deafness merely a medical condition that prevents deaf people from fully participating in the (hearing) society at large? Or is Deafness (written with a capital D) the moniker of a minority group, one with its own distinct language (e.g. American Sign Language), history, culture, and values, and thus deserving of the same civil rights afforded to other linguistic minorities? Because implants promise to eradicate deafness, they also threaten to undermine the claims of some deaf people to self-realization as members of a linguistic minority group. Not surprisingly, the marketing materials embrace a medical model of deafness as a stigmatizing deficit to be fixed. But they do so by downplaying the implant's uncertainty (i.e. implants to date can not deliver on the promise to cure deafness for all) and by ignoring the contests within the Deaf community over the place of implants in the lives of d/Deaf people.

Yes - hearing parents of a deaf/HoH kid have many struggles. And maybe the parents in original article "did have knowledge of the whole deaf culture in their area." But nothing I read of the article tells me so:

We were living in Boston at the time, which was a bastion of Deaf culture. Thus, oral programs were not plentiful, but we very much wanted Rachel to be able to take advantage of all the opportunities the hearing world had to offer. At the age of three months, Rachel received her first set of hearing aids, body worn aids, which consisted of two boxes with wires running up to button-like earplugs. and then Auditory-Verbal approach". And "we still had time to turn to sign if it didn't work." Then CI even though then even not approved by FDA.

Nothing about deaf clubs, ASL, deaf culture to me. Probably not "informed decision" really.

Kaitan,

I most certainly didnt mean to imply that all hearing parents research deaf culture and ASL and all that.

But I am sure there are some that does, and you do have to realize the *image* we are showing the hearing community as a whole.

How can we expect others to work with us, when we cant even stand together as a united front on anything???

I'm not putting down the deaf community as a whole. But truthfully, how many of us deafies are wholeheartedly involved with the deaf community?

Having deaf friends that you see and visit and being on a forum is not the same thing. I love my deaf friends and I have some pretty cool ones. But, to be involved in the deaf community all the time is not for me.

I am only trying to point out some key things that people do see when they see our community in action. It only takes a few bad apples to give a *smaller* community as ours a bad name. While if you were to take the deaf from all over the world, we would not be small. But that is not possible. We are small compared to the hearing community in our towns, states, and US.

That is a major problem, because we are smaller than the whole. So when there are bad eggs within the community, it gives the impression that the community is not worth getting involved in.

 

[Bear]

And it is also not only up to the doctors to inform the parents about deaf culture.

Where is the parents responsibility in this? Are you saying that only the doctors are capable of doing the research? If a hearing parent truly wants to get ALL of the info out there, then they would also research on the net or in a phone book for deaf organizations.

If your theory is correct, then you are saying that a hearing parent of a deaf child, only automatically goes for a CI. Your theory is that hearing parents do no other research outside of a doctors office.

I dont buy that. Maybe some do, but definitely not all.

I am in no way claiming the deaf community is at fault for keeping these parents from wanting their child as a part of it. But yet, whenever someone brings up the image that we are potraying, they get jumped on no matter what.

I care about our community, and I wanna see it change. I dont mean change as in IMPLANT us all. That is not viable, nor is it respectful.

I wanna see us care about each other more than is shown. I wanna see us accept one another no matter what our choice was or what our background is.

I also wanna see us get out there more and project a positive image and show that being a part of the deaf culture is a positive thing.

We need successful deaf people out there at these Implant Centers showing that even though they are deaf, they have a good job and a good life. We need people like Shel who work with deaf children that were implanted and are not doing so good at these centers.

If I was a hearing parent of a deaf baby with no prior knowledge of the deaf world, I for sure would not depend on any doctor to tell me everything. I would do my research and find support groups, others like my child and then I would be able to make a fully researched and sound decision.

I'm sorry to say that if I had been born deaf and if my mother had implanted me and kept to the oral only approach, I would have been that she did all this without researching it. I would have asked her eventually if she had known that there was a whole deaf community? I also would have asked her about sign and why I was never given the opportunity to learn it. If she had said because I didnt know about it, I would have said how could you not?

To me it is all part of parental responsibility to seek out all the information you can find. Maybe Im wrong to have that opinion, but yet it is mine to have.

 

[Kaitin]

Kaitan,

I most certainly didnt mean to imply that all hearing parents research deaf culture and ASL and all that.

But I am sure there are some that does, and you do have to realize the *image* we are showing the hearing community as a whole.

Hi, Bear:

You wrote first:

As for the article stated above, there is another consideration to factor in. It seems like these parents did have knowledge of the whole deaf culture in their area.

. I don't think these parents did have knowledge about these. Maybe "some that does", but probably very few.

How can we expect others to work with us, when we cant even stand together as a united front on anything???

I'm not putting down the deaf community as a whole. But truthfully, how many of us deafies are wholeheartedly involved with the deaf community?

Having deaf friends that you see and visit and being on a forum is not the same thing. I love my deaf friends and I have some pretty cool ones. But, to be involved in the deaf community all the time is not for me.

I am only trying to point out some key things that people do see when they see our community in action. It only takes a few bad apples to give a *smaller* community as ours a bad name. While if you were to take the deaf from all over the world, we would not be small. But that is not possible. We are small compared to the hearing community in our towns, states, and US.

That is a major problem, because we are smaller than the whole. So when there are bad eggs within the community, it gives the impression that the community is not worth getting involved in.

Probably hearing parents (or many hearing at all) don't know enough about the community to make informed decision about "worth getting involved in".

But I don't think a person must "wholeheartedly involved with the deaf community" to give the deaf community a "good name" or teach hearing parents deaf people are not just a problem for cure. A deaf/HoH person who works hard in a career or school and is a decent human is enough I think.

For the community, the best is knowledge of differences with deaf/HoH = we are not all alike and so don't agree about everything. If we disagree with knowledge and polite ways I think we show we are worth getting involved in. I don't expect "united front" on CI - too personal decisions for all to agree. But I hope hearing parents learn about deaf culture and ASL for informed decision and I hope deaf/HoH disagree with respect and not offense.

And

How can we expect others to work with us, when we cant even stand together as a united front on anything???

Honest and with respect, Bear (you create great CI threads), I don't see most hearing parents and audiologist/CI surgeons "work with us". If none learn about deaf culture, ASL, etc they do not "work with us". If they think deaf/HoH are only problems for cure, none "work with us". I wish they did.

Maybe we disagree, but I hope no offense.

 

[shel90]

Shel,

This is why I say we as ASL users and with CI's need to get together and prove the doctors wrong. The only way we can do this is by somehow getting word out there to have like a meeting or a seminar or something where you could meet these new parents. Try to get the CI center to cooperate?

I really cant speak from a child perspective and from a CI learning Oral speech perspective.

I could however teach the benefits of knowing signs while having a CI.

Maybe it is something we need to really get together on and stand up for in each state.

As for the article stated above, there is another consideration to factor in. It seems like these parents did have knowledge of the whole deaf culture in their area.

The deaf community does not always put on the best face to invite others into it. For example, in some areas the deaf act like if you are not strongly connected to a full deaf family, then they dont wanna give you the time of day. In this type of community, they want to know your whole deaf ancestry and wanna see it. What the hell is that? That would turn alot of people off on joining the deaf community.

Then we have the ASLer's. Anyone that even wants to speak is outcasted by them. You have to support nothing but ASL or they wont talk to you. For someone like me who is oral and asl forget it. They dont take into account for us latened deaf.

Then we have some hardcore Cier's. NOT anyone here mind you. But I have seen it. Those types are like if you dont support the CI, then they want nothing to do with you. They dont want to try to understand that someone may be happy as they are. But at the same time whine because others are against the CI. Maybe their attitude is why. But they dont see that.

Then we have the anti Cier's. NOT anyone here mind you again. But this group refuses to accept anyone with a CI. If you were implanted, forget it dont wanna talk to you. You turned your back on the deaf community. So why dont you keep it that way? They refuse to see that not everyone fits into their nice little box.

Not to mention because we are a small community. The backstabbing, gossiping, and temper tantrums over the smallest thing is more apparent. You notice it more.

Now imagine you are a new parent, slung into a world you pretty much know nothing about. You do your research about the deaf community. You go meet some deaf at say a deaf club. You see all of this going on. What would you decide?

It's not always black and white. Sometimes people go for oral and hearing due to what they see in the deaf communities. They feel their children would be better off in the *majority* of the population because it is so large that the things that go on in our community is not so noticeable.

Also you have to factor in job discrimination. While many of us may have jobs and working. How many of us are in truly good paying jobs?

The hearing population mainly only sees us in jobs like walmart, stocking shelves. Mcdonalds, flipping burgers or cleaning. Many parents see that and worry that their child may be stuck in a dead end low paying job.

They dont really see that there are sucessful deaf adults. So, they feel give my child the ability to hear as much as possible and give them speech and they may not have to face that.

I can understand the concepts behind it. But that doesnt mean I feel they are right.

Maybe it is up to us to show our own community what we are showing others.

Yea, I would love to do something like that!

I understand your point of view and you have good points. The attitude from the Deaf community to the new parents really needs to stop. All those issues and anger stem from descrimination against them for decades so they turn around and discriminate back but no, it doesnt make it right.


When I speak of exposing deaf children to ASL, I am not just only referring to the Deaf community only..I am referring to putting them in signing programs where they can have full access to all the concepts being taught so that there is little or no risk of them missing out on anything and end up becoming delayed. By getting actively involved in the Deaf community would be a bonus but not required.

 

[Bear]

We were living in Boston at the time, which was a bastion of Deaf culture. Thus, oral programs were not plentiful, but we very much wanted Rachel to be able to take advantage of all the opportunities the hearing world had to offer.



bas·tion /ˈbæstʃən, -tiən/ Pronunciation Key - Show Spelled Pronunciation[bas-chuhn, -tee-uhn] Pronunciation Key - Show IPA Pronunciation
–noun 1. Fortification. a projecting portion of a rampart or fortification that forms an irregular pentagon attached at the base to the main work.
2. a fortified place.
3. anything seen as preserving or protecting some quality, condition, etc.: a bastion of solitude; a bastion of democracy.


Meaning that deaf culture was very much preserved and known in that community they were in. So these parents did have knowledge.

 

[shel90]

We were living in Boston at the time, which was a bastion of Deaf culture. Thus, oral programs were not plentiful, but we very much wanted Rachel to be able to take advantage of all the opportunities the hearing world had to offer.



bas·tion /ˈbæstʃən, -tiən/ Pronunciation Key - Show Spelled Pronunciation[bas-chuhn, -tee-uhn] Pronunciation Key - Show IPA Pronunciation
–noun 1. Fortification. a projecting portion of a rampart or fortification that forms an irregular pentagon attached at the base to the main work.
2. a fortified place.
3. anything seen as preserving or protecting some quality, condition, etc.: a bastion of solitude; a bastion of democracy.


Meaning that deaf culture was very much preserved and known in that community they were in. So these parents did have knowledge.

Remember that the parents added this comment about wanting her child to have more opportunities in the hearing world after she made that statement. It shows that the mother has this view that if she got her daughter involved with the Deaf culture, her opportunities would be limited. That was what bothered me because it doesnt have to be that way. One can do both but yet there is this strange view that it is either the CI route or the ASL route. That is what I am hoping to send out the msg...one can be involved in both.