Tuesday, April 14, 2009

Audism Free America and Cochlear Implants

The discussion regarding audism, reverse audism, dysconsicous audism brings to light the issue of AFA’s position on Cochlear Implants (CIs).  

In AFA's list of demands, they ask Alexander Graham Bell Association (AGB) to help them research the effects of CIs on deaf children.  However, in their vlogs and videos of Judy Gough and Ruthie Jordan, they make it clear that they view CIs to be as evil as AGB.  

In AFA's vlogs it is also clear that data collection on the effects of CIs on deaf children is not their ultimate goal, instead they appear to view CIs as inherently dangerous to deaf children and to the deaf community.  

There are already several published books and articles on the psychological impact of CIs (see, for example, Christiansen and Leigh’s book), and educators and scholars are actively discussing how sign language benefits children with CIs (such as CIEC’s conference on sign language and CIs which is occurring this week at Gallaudet).  

CIs do not have the same effect on all deaf children, just like hearing aids, as there are so many factors that affect success rate, such as age of implantation, parental involvement, and school support. 

Now if CIs are compared with hearing aids, as they are both technology with the purpose of enhancing hearing, the issue becomes more clear.  In the past, those who wore hearing aids in the deaf community were looked down on until hearing aids became more widespread and acceptable.  The same seems to go for CIs today.  

However, in this case, many of the AFA and Deaf Bilingual Coalition (DBC) leaders themselves wear hearing aids and can hear and speak.  If we look closely at hearing aids and CIs, hearing aids are most beneficial when worn by those with residual hearing.  CIs help those who are profoundly deaf hear as well as hard of hearing people with hearing aids, or even better.  

Many of the deaf children who were implanted early can hear at 20 dB and understand speech clearly without any visual cues at all.  

Now, leaders of AFA and DBC who wear hearing aids and bash CIs- what is their motivation?  Why do they wear hearing aids at rallies and denounce CIs?  Is it to keep the status quo- the "closeted" hard of hearing members holding a place of privilege in the deaf community?  


Anonymous said...


Are you willing to identify yourself? DBC and AFA are willing to show their faces. Why are you hiding behind words. AL who?

Karen Jones

AL said...

I wish I could identify myself without fear of recupersions for my family. As a parent of an ASLCI child, my first priority is my children's safety. As shown by AFA's willingness to protest at schools that employ the oral method, this makes me more afraid of my children's safety. I do not want my children exposed to this kind of discrimination and oppression until they are old enough to understand all of this. Perhaps one day when CIs become as uncontroversial and boring as hearing aids, then I will gladly identify myself.

Anonymous said...


Why is it so important to you to have her identity on her blog? She has the right to privatize herself. The point is she was correct about her blog.

Every organization should be supportive with each other regardless!

K.L. said...

Great blog.

Hearing parents are going to be much more receptive to the message that ASL can work WITH cochlear implants, than the message that ASL should stand alone, and that implants are bad.

And every time a Deaf group protests around AG Bell, they simply spin it so that the Deaf group comes across as negative and angry to hearing parents. That doesn't help anybody.

raychelle said...


your post is definitely thought-provoking. I agree that the stigma for people with CI in the deaf community is similar to the stigma people using hearing aids in the deaf community 20 years ago.

i also remember discussions at Gallaudet, finding deaf people who wear iPods offensive about 2 to 3 years ago, but now nearly every deaf person at Gallaudet I know owns a iPod and uses it openly...

what is it that makes CIs so different from hearing aids and iPods? why is there so much hate against a product that serves the same purpose as other products on the market?

is it because of the surgery? (like i said in my vlogs, the surgery is actually much simpler and much less invasive than it was years ago)

or is it because of the multimillion corporations that make money off CI's? (this is no different from Apple making money off iPods)

let's convert all this energy we're pouring into this toward positive energy pushing for ASL for all, regardless of what they have by their ears... :)

definitely food for thought, thanks.

Anonymous said...

From Tami...

Hmmm... Please know that DBC and AFA do not seek to "bash" any person that has a CI. These children and adults are human beings with feelings. Not one person I know who is involved in DBC or AFA would actually speak negatively about the "person". Looking at a video will not give you the full picture of a very complicated issue.

The purpose of DBC is to bring about attention to Deaf babies and children being denied access to ASL from the start so that they can grow up equal in language and literacy. AFA seeks to bring attention to Audism which devalues ASL and make organizations and businesses aware of how they perpetuate Audism.

Everyone has their opinions about CIs and how they affect Deaf people regardless what organization, school, business, etc they are affiliated with.

It is important to look at everything in order to understand the big picture of how audism affects the Deaf/deaf community.

I am sorry you feel concerned for your children's safety from discrimination towards them for having a CI. I hope that you can learn more about DBC and AFA to know that this is the farthest thing from their goals and that your children are so very much valued.

This advocacy is about making people aware of everything involved in the big picture. The big picture is:

1. How can we insure Deaf children are not deprived of visual language, ASL, from the start in order to achieve all other possibilities?

2. How can we insure the public is aware of behaviors that discriminate against Deaf people who sign?

3. How can we insure Deaf students are able to graduate and get a high school diploma and are getting a quality education?

4. How can we insure that parents get all information about what it means to be Deaf and how children learn language and thrive? How can Deaf mentors be part of their lives?

5. How can we educate the medical profession on the negatives of the pathological approach on hearing loss? How can we get positive information on the cultural view of being Deaf to them before they give parents only the pathological view?

6. How does auditory technology play a role in all of the above?

If we all could focus on these things...just think of what we could achieve:))

AL said...

Tami, wonderful response. I'm glad someone from DBC is willing to start a dialogue with us.

Robert Alfred Hawkins said...

I'm 100% pre-lingually deaf and a lifelong user of ASL. Let's just get clean here. I want to know truths and the same goes for many. What's up with DBC/AFA Ruthie Jordan's parading with quite an anti-CI sentimentality as shown on that clip uploaded by Deaftruthseeker? Why aren't we seeing a clear message from DBC/AFA about this and that? Why did the NAD withdraw its position on CIs? Nowadays, feet in collective mouths are getting bigger! There's only so many questions!!!

Dianrez said...

It's sad that you are so fearful that you had to hide behind a pseudonym in order to contribute your thoughts.

I will agree with you that CI's are like hearing aids, here to stay as long as there is a hearing majority that values hearing so much that they are willing to put technology on their children and to have them live in a world constructed for hearing.

I'll also agree that in time the CI will become as accepted as the hearing aid and the ipod. Also agree completely that children should have ASL early and be able to use it throughout childhood in order to be fully understood and to understand their environment.

I'll agree with you that the CI should be available to those who want it, or to the parents that want it for their children. I'll also agree that it is not a good idea for AFA or DBC to go on record as being against the CI when audism itself is more important to fight.

However, the nature of the CI is much different than hearing aids. It is irreversible, invasive and a surgical alteration to an otherwise healthy child. It is an example of what lengths a hearing parent will go to before they consider other alternatives such as ASL.

Due to this, I personally cannot endorse the CI without strong qualifications.

The world has a long way to go in accepting people who are deaf or HOH, even with aided hearing.

RLM said...


I second ya!


The Audism Free America (AFA)really make a logical and reasonable request for the AGBell to join together to explore the lasting effects of CI on deaf babies and youngsters.

In despite of Ruthie Gordon's own gaffee about her own personal views on the issue of CIs.

We should largely focus on the AFA's list of pragmatic requests, not personalities or "gotcha" games.

President Ronald Reagan once quipped "I recently signed the legislation to authorize the bombings of Russia" while the weekly radio address microphone still on without his knowledge.

Of course, President Reagan surely painted as a warmonger by many people.

In the end, Reagan successfully achieved the real and lasting peace with Russia and forced Russia to stop its focus for the world domination.

Ruthie Gordon and Ronald Reagan always have been seen as true heroes (heroine) no matter what they said implusively.

The Deaf Truthseeker ought to be ashamed of exploiting Ruth Gordon's gaffe while she did not condemn the AGBell's secretive practices of not allowing the public videorecording of the historic AFA-AGBell meeting.

Dianrez perfectly said what she espoused about the major difference between CIs and hearing aids.

Deaf people could take off their hearing aids or Ipod, but not with the irreversible CIs.

Cochlearizing deaf babies and youngsters don't give those poor creatures any lifetime options.

Any parents have no business of cattle branding any child as some kind of property or asset. Comprendo?

Robert L. Mason (RLM)

Anonymous said...

Yes, it is sad that AL is afraid. AFA and DBC have gotten a lot of bashing, but they are not afraid. They are empowered. They have the Deaf community's support. I wonder about the CI community...not empowered enough? not enough support? Things are still controversial about AFA and DBC and they still show their FACES. CI people need to wait until things are uncontroversial and boring before they will show their faces? Hmm.

Karen Jones

Anonymous said...

There was a strong anti ci theme at the rally. Ruthie and Judy weren't the only ones to express strong ant c.i. sentiments.

People hide behind anonymous due to attacks for expressing their opinions.

Joseph Pietro Riolo said...

I know that I may be not welcomed here but I want to emphasize one point. Please do know that AFA (and DBC) does not represent all members of deaf community who do not like cochlear implant. Just because I do not like cochlear implant does not make me a member of or supporter for AFA.

It seems, at least to me, that AFA is attempting to put a moratorium on putting cochlear implant on deaf babies and children and to outlaw or forbid the oral-only methods all because these promote audism. In other words, it seems to me that AFA is trying to reduce the scope of parental choice. This is where I see AFA crossing the line.

I agree with one of your observations though. You seem to be correct that AFA's motivation for wanting more research on cochlear implant is not to evaluate cochlear implant in more objective way but to find a way to discontinue cochlear implant for deaf babies and children. But, I could be wrong. It is hard to figure out AFA's motivations without looking into the minds of the members of AFA.

Thanks for letting me make a comment here.

Joseph Pietro Riolo

Public domain notice: I put all of my expressions in this post in the
public domain.

AL said...

Joseph, all comments are welcome, either pro or anti or whatever. No personal attacks, tangential or inappropriate comments will be accepted, as per ASLCI blogspot rules. All comments that meet the above requirements contribute to the discussion, and it is hoped that an open discussion will lead to a better understanding of the motivations behind organizations and prominent/influential leaders.

Chris M said...

I'd like to add that there are many many kids who get cochlear implants for very good reasons. My son is profoundly deaf, and also has lost a great deal of his vision. Getting a cochlear implant for him was a no-brainer. We are teaching him ASL as well, but his vision will prevent him from using it in many circumstances.

Kids need every option they can get.

Scott said...

AL - I want to personally let you know that I am very sorry you are 'afraid' of being bashed etc by the Deaf community. Please understand that as some of us have already said, AFA and DBC do not represent the Deaf community as a whole, only those who choose to join those organizations. I pray all goes well with you and your childrens decisions regarding CI. You have a lot of support around you, even from the Deaf community :) Take care and good luck!

P.S. - LOL @ Ruthie Gordon being a hero. Now that's a good one!

Karen Mayes said...

To echo a few commenters, I want you to know that AFA DOES NOT represent all of the deaf communities as it claims to.

I have to step back and to look at the bigger picture and I can see that CIs are here to stay and that the new medical advancements for preventing/reversing/curing the deafness are in hand. Also, that the percentages that make up the America's deaf community flucates... some use PSE, some SEE, some ASL, some only oral, etc. We appear to forget that one size DOES NOT fit all.

I am sorry that you and other parents feel the need to keep a low profile... I don't blame you, since there are a lot of mixed messages... actions speak louder than words :o/

AL said...

Thanks, everyone, for adding to the discussion. There were several topics that were brought up during the blog and follow up comments. I'd like to revisit the main topic of the blog, which is the inequality of assistive technology- hearing aids and cochlear implants. Both serve the same function, however one is much more acceptable than the other. For CI users and parents of CI users to trust both organizations (AFA and DBC), both technology needs to be on equal footing and no bashing should be allowed anywhere by leaders and followers alike. If CIs are mentioned as tools of Audism, then hearing aids should also be mentioned as well.

The other topic is respect for parents like myself who want to protect our children. I had assumed that this was a given, that people would understand parents' need to protect their children from negative scrutiny. Perhaps this is another issue that needs to be addressed as well, as many other parents like myself of deaf children with CIs feel the same way. To be honest, I was shocked that AFA would even suggest that their members hold rallies at elementary schools. That to me is crossing the line. Using a bullhorn next to a school is also inappropriate. I could go on and on, but there are appropriate venues for members to reach out to parents and let them know about the benefits of ASL and to teach them about audism. Taunting parents about their valid fears for their children's safety on the blogsphere is not one of them, neither is holding emotional rallies next to schools with very young children.

K.L. said...

I have to say that it is comments like this one that keep us hiding behind acronyms.

-----Cochlearizing deaf babies and youngsters don't give those poor creatures any lifetime options.

Any parents have no business of cattle branding any child as some kind of property or asset. Comprendo?

Robert L. Mason (RLM)
RLMDEAF blog-----

I cannot tell you how offensive that comment is. We do not take surgery lightly, and we do it to give our kids more options, and hopefully expose them to less discrimination and audism as adults.

Valhallian said...

Great post! It appears that we will continuously need to learn more and more about CIs and how they can actually benefit deaf people. People will likely take it more seriously when it comes from actual CI users themselves or deaf parents of CI users. Now I am not trying to count out hearing parents of CI users as their insights can prove to be valuable, its just that I get the impression that deaf people will take it more seriously if the information or "education" actually comes from an actual CI user or deaf parents of CI users.

I totally respect the fact that you may want to be anonymous. However, I am fairly sure that you are aware that you may be taken more seriously if you weren't anonymous, but thats just from my own personal experience as I saw that I was taken more seriously when I was no longer anonymous.

Granted, you may get bashed, but if you keep reminding yourself that you have a lot of support from others that agree with you and you convert the bashing into fuel that motivates you further, the bashings aren't so bad actually. But either way, keep up the great work in educating us all!

Zen Nihilist said...

Thanks for the pointer to the Cochlear Implant book. I'm looking forward to reading it soon.

I fully support your use of a pseudonym as well. Who wants to worry if being open and honest about some of these issues is going to come back to haunt our kids?

Miss Kat's Parents said...

I am willing to come out and say that I am a parent of an ASL using CI child. But, I do NOT balme others for not wanting to.

I have been called an "audist", "oralist" and been told that I am trying to set Deaf ed back 200 years. I have also been told that my daughter doesn't deserve the title Deaf. But too bad, we are here to stay.

Honestly, I feel like AFA needs to focus on educating about the benefits of ASL instead of trying to bring other people down. It just makes them look vindictive and angry. Also, I can NOT support anyone who wants to end childhood implantation. I will not have other children lose out on the opportunties my child has.

Anonymous said...

I am a parent of a bilaterally implanted deaf teen. His first language was ASL and he could read by the time he was 4. His language has always been above age level and I do attribute this to his early exposure to language, this just happened to be in ASL. BUT, I decided to go ahead with cochlear implants because he was so isolated in our community despite my trying to meet with Deaf members of the community. He told me he wanted to hear, so he could learn to talk to his hearing friends, and still sign so he could sign with his Deaf friends. He tells me now that as far as he is concerned, he has the best of both worlds.

He attended a Deaf camp last summer (he identifies himself as Deaf) and one of the ADULT Deaf counselors was giving him a hard time for using CI's and my son told him where to shove it. WHY would a DEAF ADULT pick on a teenager when it is so obvious that this child was happy and well-adjusted and academically successful?

Needless to say, I don't search out members of the Deaf community like I used to. I tried to get a Deaf Mentor for him through the school district, but I had to pay someone to spend time with my son.

Where is the Deaf community when it comes to giving of THEIR time and THEIR efforts to help these Deaf children? They certainly weren't there for my son.


Anonymous said...

MM again:

I don't believe that the Deaf community has a right to say how any parent should raise their deaf child until they are willing to put themselves out there as mentors and teachers (of ASL) and help parents who have no knowledge of deafness and what it means for their child.

BionicEars said...

We have a deaf child, but we are both hearing adults.

In an ideal world, I would not consider implanting the child, I would much rather it was a unilateral decision on his part. However, the research clearly indicates that implanting at a young age garners generally good results, whereas defferring until later in life renders a CI much less effective.

By choosing to wait and let the child choose for themselves, actually in most cases you are choosing ASL for them.

As far as I am concerned, if our son wants to throw the Ci in the trash and use ASL only then thats up to him. We will be there for him every step of the way and support him in how he wants to live his life. We will make sure we continue to practice ASL with him until all of us are fluent.

Do you think this sounds reasonable?

Dianrez said...

Actually, one isn't choosing ASL by default when choosing not to implant a child. The oral method and the hearing aid route are still available, or the combined method where ASL and speech/hearing training are given equal weight.

Other than that point, I understand what you are saying, Bionic Ears. Your child is fortunate to have started with all options active and you'll support him later on when he selects the methods that work best for him. Good going!

Gervas said...

Ok first of all. do any of you wear a CI? I do and honestly i dont get how any of you can open your mouth in protest if u are neither deaf or a recipient of a CI or HA. Yes the surgery in irreversible bt get your facts right. The external processor can be taken off and you will be as deaf as you were when you were born or went deaf. I decide whether i want to hear or not regardless of if i am implanted. Because of JRA I've been deaf for 7 years. I've seen you all talking about depriving a child a chance to be apart of the ASL community and that maybe be but the same argument can be made for not letting a child experience what it is like to be apart of the hearing community. If you can say that the hearing community needs to understand the deaf community then the same can be said of the deaf community onto the hearing. I'm not saying its right to force a child to wear his or her implant because that's a decision for the child but paving a way for the child to be apart of both communities and not feel left out in my opinion is an awesome thing. I myself don't sign but i have many friends in the deaf and hearing community. Everyone needs to know the risk of getting a CI but the way they are going about it it seems as though your a traitor if you get one.

I do enjoy silence especially when im reading or gaming. Honestly there are times I lie to my parents about my battery for my CI not being charged just so i dont have to hear them. But that doesnt mean i dont enjoy hearing.

Ive also tried learning SL and it wasnt for me. just like hearing may not be for some deaf people. I dont think that anyone can stand up and openly slander something they arent willing to try.

Anonymous said...

I am not going to slander here because I DO have experience with the CI. My granddaughter has bi lateral. My problem with the CI is some unethical doctors that feel they must deceive the courts and the deaf parents of a deaf child in order to put CIs on a deaf child. My granddaughter HATES her second implant and is forced by her hearing mom and step-dad to wear it. The schools are breaking the law not providing her an ASL interpreter even though the US Dept of ED office of civil rights says that CIs and HA are not to be a reason NOT to provide services. My granddaughter has been kept from her native language by being limited in her exposure to her Deaf father. THAT IS WRONG!!!

Anonymous said...

Last night I went to a Deaf center party. An oral school had a table there. The woman running it was signing. I asked her why she signed. I also asked her if the oral school used signing in their school. She said they didn't. But the reason she signed is because her daughter had a CI after having meningitis but died at age 12 after 3 years of seizures. Didn't want to acknowledge that the CI might have had something to do with her death. She did use SEE with her child. I think it was deceptive on her part to promote the oral school and be signing. Her school was interviewed by the news over forcing children to wear CI all their waking hours and they stated a child HAS to wear them ALL waking hours in order to learn to talk. WRONG. NOT true! I know. I have a child that learned to talk and didn't wear them all her waking hours! This attitude is so closed minded.

Anonymous said...

Well said!