Correct sign for "cochlear implant"

Ever noticed how some deaf people improperly sign "cochlear implant" which resembles closely the sign for "Frankenstein" where one of the bolt sticks out of Frankenstein's neck?

Many do purposely sign "cochlear implant" on the neck because of their bias against cochlear implant rather than correctly signing it.  One can effectively make an argument for or against cochlear implant while signing correctly the sign for "cochlear implant" instead of signing it in an unprofessional manner with such subtlety as a way to mock those with cochlear implants seeing them as "monsters."

Some will defend their signing and say they are "lazy" to sign it correctly. If they actually come up with that excuse then you will know they are not being honest about it.  The cochlear implant goes nowhere near the neck. And they know that.

Karl White speaks

Karl White who is the Professor of Psychology at Utah State University and the founding Director of the National Center for Hearing Assessment and Management (NCHAM) discussed recently with an ASL interpreter in the YouTube comment section of his TEDx video (currently over 10,000 views) regarding parental informed decision, deaf children, ASL, and cochlear implant:


KW: As noted in my TED talk, when CI users remove the CI, they are still deaf. I agree that sign language can be a useful "back-up" language in such situations and I agree that children need access to as much language as possible. It is very important though that parents be able to choose how they want to communicate with their child. The job of professionals is to fairly & completely inform and then support parents in their choice. We should never impose our beliefs on parents.

For newly identified deaf babies, well-informed parent choice is the primary goal. Parents should be educated about all options and then be given excellent programs no matter what they choose. It is not appropriate to say all deaf children should learn ASL any more that it is appropriate to say all deaf children should have cochlear implants — those decisions should be made by the parents after they have been fairly and completely informed about options, pros/cons, risks/benefits, etc.

ASL Terp: Hi! I agree we should not impose our beliefs. There needs to be a balanced, full disclosure approach that shows research on the bell-curve? of CI users. Some do not benefit, some remove over time, some do benefit and some thrive. In addition there needs to be a positive encouragement by professionals for consistent visual language access which is not detrimental to development...and is actually beneficial for bi-lingual, bi-cultural personhood of the Deaf/Hard of Hearing/DeafBlind individual.

How about this...include in your talk an interview with a family who did approach with sign language from onset of deafness/hearing loss, who did implant, the implant was not successful (for whatever reason) and the family expresses gratitude for having fully met their child's needs by providing consistent access to language both auditory and visual. This would demonstrate the value of always have an underlying visual language accessible regardless of the success or lack of success of the CI.

I bring this up because I've seen families who do not do any signing with their kids...get the CI...spend several years trying to educate (up to age 6-7?) the CI is not successful, language is not developing and the parents express shock, grief and guilt that their child has such a delay that was in a sense imposed. Why have families go through that?  I think professionals have a responsibility to ensure all kids are successful to the extent possible with fully disclosed current information.

KW: I agree completely that professionals have a responsibility to fully and fairly inform parents and to work to help children achieve their full potential. There are certainly cases where hearing technology is not successful, just as there are cases where ASL is not successfully used by the family. We need to continue to improve the way we inform and support families as they decide how they want to raise their children.

ASL Terp: I think this is the crux of the controversy around your presentation. What is the basis for saying it is not appropriate for all deaf children to learn ASL? It is readily available to learn, does not harm the child, provides access to visual language, supports interactions with other human beings, provides increased intellectual stimulation. Learning ASL is a win-win. Win for child: 24/7 full access to communication. Win for intellectual and educational bilingualism + CI option.

KW: Sorry, I didn't phrase that well. I don't have a problem with any deaf child learning ASL - IF that is what the parents of that child choose. The key is informed parent choice. Some parents do not choose ASL and they shouldn't be forced to have the child learn ASL. Just like parents who don't want their child to wear a hearing aid or a cochlear implant should not be forced to have their child wear one. Any deaf child whose parents want him/her to learn ASL should be given support to learn ASL.

"F*ck you, Deaf community!": Part II

Sometimes people who think they are doing the right thing actually end up hurting their cause and image when it comes to certain deafness related issues and concerns. I blogged this before a few years back and I think this warrant another blog piece in light of Daniel Winship's Facebook piece that generated lots of negative and positive reactions as a reminder that spewing hate and vindictiveness could simply backfire where targeted parents wrongly accused get the full wrath of the Deaf community's ire. Sometimes quite skewed in their outlook while other times sobering. The thread I'm about to link provide an insight look into the views and perspectives of mostly hearing people on the discussion of cochlear implant. It's a sobering read and seeing how many of them experienced the wrath from certain inner circles of the culturally deaf community their ire and hate. The author of the thread, Fuck you, Deaf "Community"   , is a hearing parent who exemplifies the very example of how the venting of the culturally deaf community can backfire in getting the very parents their support on the cochlear implant issue.

---

1. My 4-year-old daughter is deaf. She is not "Deaf" with a capitol D. She simply has no hair cells in her cochlea, she has no functioning inner ear. Even though she is deaf, she is not automatically part of your little world of shame and exclusion, and her native language is not ASL. It is not child abuse if we decide to raise her in a household that speaks English. So: fuck you for claiming her as your own, without a second thought to the wishes of her parents.

2. We gave our daughter cochlear implants when she was an infant. We made this long and difficult decision based on the research that was available to us, based on the educational resources available in our area, based on the nature of her deafness, and, yes, based on our own biases and desires. She had her surgeries before she was old enough to make the choice for herself, because to wait so long means to give her hearing long after her developing brain can make the best use of it. It is a well-known and long-researched phenomenon that pre-lingual implantation leads to vastly improved speech and hearing skills. But you call it child abuse. You call it cosmetic surgery on an infant, and more than once you called me a monster for it. It is not child abuse, to make complicated decisions about your kids without their input - it's called parenting. Nor is it cosmetic to give my kid a developmental boost. So: fuck you for heaping accusations of pre-lingual cosmetic surgery child abuse on me.

3. Our family is learning ASL, and have been since we learned our daughter was profoundly deaf. We will use sign as a second language, indefinitely. My wife is in school to become an interpreter. Nor do we believe in a purely oralist tradition; we acknowledge the importance of communication between deaf people without assistance. We get it, ok? We're committed. But because we gave our daughter cochlear implants, you automatically believe that we're out to destroy ASL, to destroy Deaf culture. You never listen to our reasoning, because what do we know? We're motivated by a desire to mingle in both worlds, and yet we're constantly scoffed at by the Deafies on principle. So: fuck you for your pernicious false dichotomies.

4. Speaking of false dichotomies: what the hell do you mean by the "Hearing Community"? You mean the 99% of the world...with functional ears? They form a single community separate from your own? Because obviously it's the Deaf Community vs. the world. Yeah, fuck you and your false dichotomies, again.

5. It's funny how your handicap isn't a handicap. You aren't missing a major sensory organ, it's simply that you have chosen a primary language which is signed rather than spoken. You embrace and welcome the nature of your language and your community, and you are, you say, just as capable as any hearing person. I get it - it's not a handicap. It's not a disability. You feel that there's nothing wrong with your bodies. You aren't broken machines in need of repair. You're not incomplete people deserving of pity. You're a close-knit community because, I gather, there's a conspiracy of doctors and audiologists and educators and academics and hearing-aid industry types, who are, to a person, out to suck your wallets dry then utterly crush and humiliate you, simply because...they hate your lifestyle choice. But you look past all that. You're complete and beautiful human beings and you're happy with the way God created you. There's nothing wrong with being deaf. Deafness is beautiful! So fuck you for demanding - and happily accepting - constant special accommodation for your alleged non-handicap. (And fuck you for demanding respect and understanding from my family, without giving us any in return.)

6. Your precious ASL doesn't have a sweet simplicity; it's just as capricious and arbitrary and fucked-up as any other language. I mean, come on! In our current class, we're learning three - THREE - different signs for the word "car". Which you don't apparently use interchangeably. What the hell? It kind of messes up your principle of "conceptual accuracy". Especially considering that there are many signs for most common words. A lot of the difference is regional, but a lot is just "we do it this way, they do it that way". ASL is, simply, fragmented. English, at least, has standardized on "wh" question words: "who", "why", etc. But English, even in signed form, is "too ugly" for you. Fuck you and your "beautiful language" high horse.

7. ASL purists, who want to distance ASL from English as much as possible, who advocate removing as much fingerspelling from the language as possible, who want to remove as many initial letters ("T" for toilet, "B" for box, etc.) as possible... yeah, I see you fingerspelling common words, I see you happily using intial letters. Fuck you for...well, for being uppity elitists. Go drive a Hummer while you're at it.

8. ASL has no written form. It must use another language - the hated and maligned English - for written communication. Therefore, it's nigh-impossible to look up a new word by its sign. Therefore, memorization plays a much larger role in ASL than in most languages. Therefore, more effort goes into learning how to sign, when other kids are learning how to read and write. Guess what kind of impact that has on illiteracy rates? And...you seem to prefer it that way? Before I met y'all I thought the illiteracy was the result of educational and developmental difficulties. But the more Deaf people I meet, the more I find that you don't much care about reading and writing proper English. ASL and TV is all you need. So...yeah. Fuck you for that, too. By the way, my deaf daughter is learning how to read, you dipshits.

9. While I'm at it, Alexander Graham Bell has been dead for 86 fucking years. When he was alive, he didn't gas any Deaf babies, he didn't sterilize anyone. If you honestly believe that he wanted to prevent deaf people from reproducing, even when his mother and wife were deaf, then I honestly believe you're pretty damn stupid. At any rate, it's a vastly different world today than it was back then. Believe you me, there are plenty of other villains to worry about today. Fuck you for not getting over A.G. Bell already.

10. Again with the calling me an audist in denial of your beautiful heritage. Which is funny, because from my perspective, you're being "deafists" in denial of your own handicaps. But you don't see me calling you out on it several times a week. Fuck you and your utter lack of tact.

But mostly, fuck you for putting a claim on my kid. I've been at this for more than four years, and you're just getting more hostile at us hearing-family-with-deaf-child-who-has-cochlear-implants. Our world, the world of the hearing, the world we're raising our girl in, the world you loathe so much -- our world is fucked up, sure, but it's roses and cotton candy and day-long free pony rides compared to yours.

Remember AB2072...?

Remember AB2072?  That was three years ago when the brouhaha started.

Remember the veto of that bill and the reason why?  Refresh your memory here.  And how that bill could have created a path to have a California law recognizing ASL as a valid option for language and communication access?

Remember how happy those culturally deaf protesters were when AB2072 was vetoed by the governor of California?

Do you also remember in the AB2072 bill it referred to California's Department of Education as one of the multi-agency that support the Early Start Program?  And how they would provide a packet of information on "Communicating with Your Child" with information about local, state and national resources and how the Dept. Health Care Services web site provides links to local, state, and national resources regarding deaf and hard of hearing children as stated in the bill ?

Remember in 2010 the year when AB2072 came out in California the Department of California did not have a position statement on language access for students who are deaf and hard of hearing? Do you realize that the CDE has now posted their position statement on their website two days ago?

Do you realize in their position statement what the Department supports in terms of language and communication access?

Recognizes and respects the right of parents of children who are Deaf or Hard of Hearing to make informed decisions about the language(s) they will use in raising their children.

and

Recognizes and respects the right of parents of children who are Deaf or Hard of Hearing to make informed decisions about the communication tool(s) they will use in raising their children.

and more importantly on the choices,

Believes that parents should not be compelled to choose between spoken and signed language. They may choose to use both.

Remember those who were against the AB2072 bill stated their reason why?

The opposition argues that the focus of this bill about "communication options" is misleading and picking one option over another would only rob the child of the ability and opportunity for full language acquisition.

Do you want to read California Department of Education's position statement on language access again on the parents' right to make an informed decision regarding their deaf or hard of hearing child on language choice and communication access?

Remember how happy those deaf protesters were when AB2072 was vetoed the one opportunity on creating a path to have a California law recognizing ASL as a valid language option as a beginning foundation? How does that reconcile with the fact today that CDE now supports the right of deaf and hard of hearing children to have early access to a complete language, visual OR spoken, from birth? This mean CDE would support a deaf child with a cochlear implant or a hard of hearing child with a hearing aid to have early access to the spoken language only. Or that a child can visually sign in SEE. Even CUED speech would be a valid option. CDE position statement does not say they support early access to a complete visual language (i.e. ASL) which is what NorCal wanted in the first place.  Instead, CDE supports early language access either visual OR spoken, OR both.

Here's the funny thing if not ironic by now was that in the beginning the Deaf Newborn Identification and Advocacy (DNIA) strongly recommended changing the Newborn and Infant Hearing Screening program by putting the Early Start under the California Department of Education.

Early Start should be under the state entity that is best fitted to provide oversight and coordinate early intervention services: The California Department of Education (CDE). The Department of Developmental Services (DDS) should not be involved at all, unless a child in a particular case is developmentally disabled.

And

The CDE should be the entity responsible for designing an appropriate resource guide-handbook...

The DNIA states that ASL should only be the first option from the start along with reading and writing English with an emphasis on shifting away from the ear and the spoken language (i.e. aurally and orally) and that they are to be secondary in a deaf or hard of hearing child's life. But the CDE,

Emphasizes that the purpose of Early Start for children who are Deaf or Hard of Hearing is to ensure that these children acquire age appropriate language skills to enable them to do well in school and career.

Nothing is said that ASL should be the language of choice for deaf or hard of hearing children but rather that the language could either be spoken OR visual, OR both as determined by their parents when they make their informed decision.

How does it feel to have a hole in your foot now that California Department of Education has solidified their position on language access for students who are deaf and hard of hearing, and Early Start?  Sounds like both CDE and DDS are very much in the same camp regarding their positions and philosophies for deaf and hard of hearing children.

Ain't that wonderful?

The Walking Effect

The difference between Walk4Hearing and Walk for ASL?

Walk4Hearing involves the community on a much larger scale with thousands of people every year in 22 different cities from June through October. The local media reporting in each city help generate more public awareness about hearing loss. It's a public relation dream machine. Walk for ASL on the other hand involves 15 culturally deaf people who will walk for 30 days from San Francisco to Santa Monica, California with the hope that their actions and message will capture the attention of the media.

Walk4Hearing is again raising money and has a very successful formula since 2006 because approximately 1 out 8 Americans with hearing loss have something that they can relate to each other with a common condition. There are many more hearing parents, friends and families who know someone with a hearing loss.  It could be their grandpa who experienced hearing loss later in his life. Or have a deaf or hard of hearing brother or a sister. A parent with a hearing loss. A hearing person whose best friend wears a hearing aid. A next door neighbor whose teenager experienced hearing loss from Meningitis.  Hearing loss is such a common condition in the United States the majority of the population are familiar with it. And because of the familiarity about hearing loss they become much more approachable about auditory-oral education, hearing aids, cochlear implants, or implantable hearing device that uses the eardrum as a natural microphone. No wonder auditory-oral schools are succeeding in their public relation efforts with their communities.

In its first year in 2006 the Walk4Hearing raised over $300,000. Since 2006 they have raised several million dollars. In 2011 Walk4Hearing successfully raised $1.1 million dollars in a matter of months. In 2012 they surpassed the $1.2 million dollar mark. This year their goal is to raise $1.4 million dollars and so far they are 24% of their goal with $336,000 raised already and they are on track to surpass the $1.4 million dollar mark before the first walk to start in June of this year.

Money raised is shared between national and local programs and services including support of children with hearing loss at www.kidsandhearingloss.org.

National Programs and Services    

• Provide timely and reliable information about hearing loss through HLAA’s website, Hearing Loss Magazine, HLAA e-News, the Hearing Loss Support Specialist Training, message boards/chat forums and annual conventions
• Advocacy at the national level to affect legislation that impacts people with hearing loss, whether it’s funding for hearing aids, cochlear implants, communication access in public places or other important issues
• A nationwide network of chapters and state organizations providing peer support
• Support for parents of children with hearing loss at www.kidsandhearingloss.org
• Outreach to veterans returning with hearing loss
• Social networking site for young adults with hearing loss at www.hearinglossnation.org

Local Programs and Services    

• Captioning and hearing assistive technology at HLAA chapter meetings to make them accessible
• Scholarships toward college tuition for students with hearing loss
• Funding for hearing aids and assistive listening devices for people who cannot afford them
• Installation of hearing assistive technology in public places, such as community rooms and public libraries
• Captioning of live theater productions
• Seminars on coping with hearing loss

The www.kidsandhearingloss.org website is to help

empower parents of hard of hearing and/or deaf children by providing the resources necessary for them to make informed decisions about their children’s hearing loss.

Below is a Walk4Hearing video promotion with subtitles.




Walk for ASL is a new venture idea to help raise awareness and seek funding for their own agenda and cause. It only actively involve 15 deaf people who will walk in California the 600 miles from San Francisco to Santa Monica in 30 days along the Pacific Coast Highway. Their goal is to get the attention of the media.

The difference here is that ASL and deaf culture are essentially a hidden language and community. They are more apparent in large cities such as Washington D.C.; Rochester, NY; Seattle, WA; and Austin, TX. Even in large cities the bulk of hearing people go about their daily lives and never get to meet or see a signing deaf person in their life. And for a good reason because the culturally deaf community make up about 0.2% (0.002) of the total population in the United States. The chance to meet a signing deaf person or a deaf group would be quite small. It becomes harder for hearing people to even sympathize with such a small deaf community when they try and raise awareness on ASL, a language and culture that are totally foreign to most of the hearing society. They might hear about signing deaf people in the news on rare occasions or by chance see a deaf character in a television show. But to the hearing society the language and culture of deaf people are still completely foreign to them.

Below is a Walk for ASL video promotion but no subtitles or transcript available.

Reframing Hearing Gain

Back in the days before electronic hearing aids or cochlear implants became effective the term "hearing loss" was used to described a condition caused either by genetics, disease or accident. It is a medical descriptive term just like "vision loss" that accurately describes the condition.

With the leap-frogging advances of hearing technology the concept of "Hearing Gain" takes on a more meaningful interpretation on what was once lost has now gained new sound and opportunities in the hearing world, yet people can still retain their identity as a person with a hearing loss or deaf. The term "Hearing Gain" has nothing to do with on becoming like a hearing person but rather the opportunity it gives and the opening of doors to a different world.

This is true of one deaf woman, Sarah Churman, who made a Hearing Gain when she was given the Envoy implantable hearing device. The device is not a hearing aid since it has no microphone but uses the ear drum as a natural microphone. Sarah experienced a Hearing Gain going from a world of muted and hushed sound that her old hearing aids could not fulfill to a rich, stereo-sound world with the two devices naturally amplifying the natural sound into her eardrums.  This is probably the ultimate form of "Hearing Gain" so far (short of having stem cells restoring hearing loss naturally) that is done on gaining and using natural sound. This cannot be done with hearing aids since sound goes through a microphone and gets digitized and amplified at the end to the ear drum. The same for cochlear implants where sound is converted into digital form before reaching the cochlea in the ear.

If not that then hearing aids or cochlear implants people would give deaf and hard of hearing people their own kind of Hearing Gain experiences where sound and opportunities would open up for them. We saw the strong reaction of Sarah Churman who experienced a life-changing moment with such a new hearing technology it overwhelmed her expectations. Same for cochlear implants.  And even hearing aids. Putting them on and realizing just how much sound they were missing and the connection with the hearing world.

True Hearing Gain would be the time when the restoration of hearing loss could be reversed and restored. In the mean time, Hearing Gain continues apace every day each time a hearing aid, cochlear implant or implantable hearing device gets turned on.

Using your voice at Gallaudet University and elsewhere is OK

There were several instances of a protest supporter, student, faculty or alumnus who used his/her voice (without signing) in front of hearing, deaf, and  hard of hearing audience. Most of these people who used their voice instead of signing were either deaf or hard of hearing at places like Gallaudet University and the Senate Health Hearing in California on the AB2072 bill. In all cases there were sign language interpreters available and in some cases included voice interpreter and real time captioner.  This is about respecting communication preferences of deaf and hard of hearing people. A preference that they feel most comfortable in. Due to certain circumstances sometimes voice had to be used instead of signing.

Before I get started I want to remind people that Gallaudet University is a true, bi-lingual institute. I would like to think students attending Gallaudet University are not linguistically disabled in the English language, especially towards the end of their undergraduate career with a strengthened English competency and literacy.   I see both the English language (spoken or written) and sign language as equally supported on campus. Both ASL and the spoken English language deserve equal respect in the cases I'm about to present.

Secondly, I must remind people that president Hurtwitz of Gallaudet University re-iterated a key point that ICED issued a global call to "accept and respect all languages and all forms of communication" in the education of deaf and hard of hearing people. There were no restrictions or specificity against the use of Cued Speech, oral-auditory methods, SEE, PSE, AVT, note takers, CART, captioning, texting, voice to text, use of hearing aids and cochlear implants to help communicate and listen, and so on. Nor did ICED specify or condemn for using one form of communication method over another. Nothing was said about which form of communication MUST be used but rather that all forms of communication MUST be accepted and respected.

Did you get that?

Thirdly, as a side note, most students on campus do not sign in "pure ASL" but instead mouth the words while signing almost or completely in English word order like a PSE or signed English format. Some do sign and use their voice at the same time like former interim president Robert Davila of Gallaudet University as you can see (and hear) in the video below at time stamp from 1:13 to 2:01. Also note in the video on how deaf/hh people sign and mouths the words at the same time and oftentimes in English order. Pure ASL? Not really.



Moving on.

 

The first notable so called "scandal" that I'm aware of took place at Gallaudet University in 2006. Dr. Brenda Brueggemann, who is deaf, was the Commencement Speaker for Gallaudet University's graduating class of 2006.  She used her own voice instead of sign language.

 

 

 

She was at the time the interim Acting Chair of the Gallaudet University Board of Trustees. She was essentially pushed to take over Celia May Baldwin's position after she suddenly resigned claiming threats were made against her by some nutty pro-DPN2 protesters.  After the 2006 Gallaudet University graduation ceremony Dr. Brueggemann was wrongly attacked for using her voice.  The attackers simply did not see the bigger picture the reason why she had to use her voice in the first place as explained to me by Bruggemann in her email to me in 2010.

Meanwhile, I do also completely understand the reason and "right" for using ASL more and "better" --especially at places like Gallaudet. My ASL is only about half-good right now--not even as good as my German probably. But I can have conversations. I did so all the time as Board Chair with King and other Gu administrators directly on VRS (not using interpreters). I get by. And had I had any time to actually prepare my remarks for the GU graduation last May, I probably would have signed them more or at least part of them. But I didn't have that prep time. I was dropped into the Acting Chair's position on May 10, to be exact--once CM Baldwin resigned. And I was handed the remarks she was supposed to deliver (already scripted) for graduation on May 12. In fact, they didn't even give me the script until the morning of May 12. And it still had her name at the top of it! So, using oral/spoken English, I could feel comfortable enough to develop a few of my own "touches" in the prepared script. But I sure couldn't do that trying to use ASL....

If only the attackers knew about the little known history of why Dr. Brueggemann used her voice then they would not have screeched themselves into an apoplectic fit.   Instead, they get eggs on their faces just like Random Thoughts and Musings by moi blog who got everything wrong about Dr. Brueggemann's reason to use her voice that day.

Feeling silly right about now, don't you?

Let's keep an open mind here, folks.  Signers have a different level of fluency and visual reception/recognition. Not all deaf or hard of hearing people know sign language.

Dr. Brueggemann gave me a poignant but funny message in her email to me to share with everybody:

"Hey, I like my voice!" I'm proud of it. It's unique, it's mine, I like it. I think I'll use it! - Dr. Brenda Brueggemann. Sept 1, 2010.

Yeah, me, too.

The second "scandal" occurred around November of 2009 when a hearing doctoral candidate at Gallaudet University presented a dissertation defense in spoken English rather than ASL to a diverse audience of deaf, hard of hearing and hearing students as well as professors. Gallaudet University provided ASL interpreters. That "scandal" was short-lived, too.  Not much details other than it happened. Although I do admit this has nothing to do with a deaf or hard of hearing person but it was the idea that a doctoral candidate was allowed to use his own voice to speak in his dissertation defense at Gallaudet University.

Then we have an unknown person named "Bobby W" who claimed to have used his voice in 2006 to defend his student teaching experience for his degree at Gallaudet University:

If it makes you feel any better at the height of the campus scandal in 2006 while I was defending my student teaching experience for my degree from Gallaudet in front of the Education Department. I also choose to use my voice to do so. I used ASL for the answering/question session but the actual defense I used my voice. Imagine defending an education degree from Gallaudet University orally. I'm sure I was the FIRST to ever do so.

I received a few funny looks from my peers and a few of the EDU professors but It was a success...

-Bobby W.

Bobby W, where are you? Are you deaf, hh or hearing?

Next, of course, you have another Gallaudet University alumnus, which would me, who used his voice to speak at an audience at Gallaudet University's first ever vlogging/blogging conference in 2007.  I was one several panel members at that vlogging/blogging conference.  It was streamed in live in front of an internet audience and those physically present. Most people, I think, were quite receptive of my decision to use my voice based on the comments I received compared to Dr. Brueggemann's who probably got more people their panties in a bunch.  I don't think mine counted as a "scandal" by any stretch of the imagination.

And then we had this culturally deaf guy who was the Sacramento chapter president of CAD used his voice at the Senate Health Hearing in California in a room full of culturally deaf people which easily outnumbered the number of hearing people present. It's not a scandal if a deaf person choose to use his or her voice to speak or use sign language. The deaf and hard of hearing community support those who have a different but preferred mode of communicating.  You can find the original video of Tim Riker and others at the Senate Health Hearing in here.  




But the real eye-brow raiser was when Tim Riker criticized another oral deaf person, John Fortias, for having "unintelligible speech. " The sad thing is that the "unintelligible speech" claim is not true at all. John's speech is intelligible as evidenced in a transcript and by the interpreters in both videos (see above and below). It is quite evident that a sign language interpreter could understand John's speech as evidenced in the video below (video source).



The message?

If you're deaf or hard of hearing, whether you wear hearing aids, cochlear implants or none at all, it is alright to use your voice to speak in a public setting as long as other modes of communication are accessible to those who cannot hear, have trouble understanding the spoken word or unable to understand a different language such as ASL.  Let's hope students and faculty members at Gallaudet University will not shame students for using their voice as a choice.  After all, Gallaudet University is a bi-lingual institute.  Don't let people bully or chide for your preferred communication choices.

I have a question

A captioned video, "I have a question."

Hogwarts, Deaf Schools, Mudbloods and Pure Bloods, oh my!

Recently I covered a piece about how some people view going to residential schools or deaf schools as similar as going to Hogwarts. That's fine. Each to his or her own. However, I saw that video as an excuse to bash and attack AGBell and oral/aural schools.

In the 2005 Journal of Deaf Studies and Deaf Education titled "Understanding Harry Potter: Parallels to the Deaf World" saw parallels of deaf kids in deaf residential schools similar to that of Hogwarts and Harry Potter but without the paranoid bashing of AGBell, oral/aural schools, and mainstream schools.  It was a good piece. It covered the essential areas about identity, isolation, acceptance and so forth. But there were a few things I noticed that were glaringly absent. It did not discuss the all important "pure-bloods," "half-bloods," "Mudbloods," the Malfoys as bullies, and the Houses of Slytherin, Gryffindor, Hufflepuff, and Ravenclaw.  Something that you would see in deaf residential schools when it comes to self-segregation along with the "have's" and "have's not."

Why leave those details out? You can easily check it out by typing in the keywords and do a look up and see what is missing in that parallels analysis.

What is interesting is that one of the main and recurring theme in all of the Harry Potter movies at Hogwarts is the constant bullying by Draco Malfoy and his friends toward Harry Potter, Hermione Granger, Ron Weasley, Neville Longbottom, and many others. Draco Malfoy was especially harsh towards Harry Potter who is half-blood because of Potter's being famous or well known in the wizarding world. Jealousy, utter hate, his loyalty to his pure-blood lineage (and to his father) and to "the cause" (blood-purity) were often manifested in Draco's own bullying spree which was patently obvious in the Harry Potter movies. The ironic thing is that Draco Malfoy is a pure-blood who comes from a long line of pure-bloods of the Malfoy family as the nth generational pure-blood who use that status and opportunity in his delight to sneer on "half-bloods" or Muggle-borns (not born into pure blood of wizard or witch parents) who on occasion call them derogatorily as "Mudbloods"  which makes a very familiar theme for some culturally deaf people who are doing their own little battles that they precipitate by bullying others. Pretty much like calling deaf/hh people as "deficit thinkers" or using their own Deaf organizations to attack other deaf/hh people or organizations who have different, alternate opinions, viewpoints or philosophies regarding deafness-related issues.

It was interesting that the journal study "Parallels to Deaf World" did not draw any parallels between Hogwarts and deaf residential schools on the bullying aspect. It also did not draw parallels on how deaf and hard of hearing students self-segregate themselves into the "pure-bloods" or nth generation Deaf family (born into Deaf parents) whose first language is ASL versus those whose first language is the English language, who are born into hearing parents, may wear hearing aids or cochlear implants and may have a preference to speaking and listening over signing.

The irony is simply too much.

In fact, in Gallaudet's 2004 Spring Odyssey electronic magazine has a dedicated issue on bullying. It discussed questions whether it was possible deaf and hearing youths are seeing and learning far more pro-bully messages in our culture than anti-bully messages. And how people encourage bullies to bully others (I can see how this can continue and carry over into adulthood through other means and medium). Just like how Draco Malfoy gets his pleasure whenever his friends encourage and support him when he does the bullying because he is seen as the leader of the pack because of his blood-purity lineage being the nth generational pure-blood. Draco Malfoy constantly initiate the bullying of Harry Potter and others, and openly call them "Mudbloods."

The question becomes this.

Who are the "Draco Malfoys" in deaf residential schools (or even at Gallaudet University) who secretly desire to eradicate the hearing aid and cochlear implant "culture" among deaf and hard of hearing people? Who are the "Draco Malfoys" who will bully other deaf/hh kids at school for their lack of "purity"? Who are the "Draco Malfoys" who sneer at deaf/hh kids who can speak and listen well in another language,  use CUED speech, wear hearing aids or cochlear implants but don't have culturally deaf parents?  Who are the "Lucius Malfoys" (Draco's father) who encourage Draco's bullying ways at Hogwarts? Who are the Lucious Malfoys who go after organizations that support the "mixing" of Muggle-borns ("half-bloods) with Muggles (non-wizards or witches) with their ways and culture rather than support the continuing lineage of blood purity, its culture and ways?

As an adult, Lucius was an aristocratic wizard and head of the Malfoy family, believing strongly in notions of blood purity and the superiority of pure-blood wizards. He joined the Death Eaters, who shared his views on blood purity, and participated in the First Wizarding War.

If I wanted to I could see a lot of parallels when it comes to the bullying aspect, the self-segregation that occurs at deaf residential schools much like the Houses of Slytherin, Gryyfindor, Hufflepuff, and Ravenclaw, the ideology of Deaf culture and language in their own "blood-purity" aspect and to their "the cause" much like the wizarding wars one and two.

Another interesting parallel among deaf culture residential schools and Hogwarts is that in the Harry Potter movies they remind the audience that the wizarding population that is Muggle-born is on the rise while the pure-blood families shrink in size and number which has led to wizarding wars.  Sounds familiar? More deaf residential schools have closed over the years in favor of mainstream schools which allow the mixing of culturally deaf, deaf, and hard of hearing students much the same way Hogwarts allows both pure-blood, half-blood and half-breed wizarding students into their curriculum with Harry Potter being the most famous half-blood Hogwarts student.

Sounds awfully familiar. 

Dumbledore (half-blood wizard) explains the blood-purity complex and problem of what Lord Voldemort and other arch enemies of the dark magic believe in.

Dumbledore asserts that the much-vaunted blood purity does not exist, and is only a fiction maintained by the deceptions of supremacist wizards.

The whole crux on this argument of mine surrounds on this ideology of "blood purity" or "pure-bloods" and how the pure-bloods ways, language, and culture are seen as ultimately superior and the only way to, paradoxically so, live in order to "survive." Those who do not believe or support their ideology or cultural ways deserve to be eradicated or abandoned, hence these "wars." If you want to discuss "parallels" then this sounds pretty much like how some culturally deaf people and their organizations who are bent on destroying other organizations like AGBell, oral/aural schools, CUED speech, cochlear implant companies, hearing aids companies, and such. They attack through the constant slurring, hate, venom, disinformation campaigns, and protests in the effort to promote their way of living as superior rather than to accept the fact that many deaf or hard of hearing people have a different philosophy and ways of living. They are not the ones doing the attacking but rather among some of the, excuse me, "pure-blood extremists." Sirius Black is a pure-blood wizard who oppose the use of the Dark Arts and discrimination based on blood purity so not all pure-bloods believe in the blood-purity as being "superior".

.... a pure-blood wizard, son of Orion and Walburga Black and elder brother of Regulus by a little over a year. Although he was the heir of the House of Black, Sirius disagreed with his family's belief in blood purity and defied tradition when he was sorted into Gryffindor instead of Slytherin at Hogwarts School of Witchcraft and Wizardry, which he attended from 1971 to 1978. As Sirius' relationship with his relatives deteriorated, he gained great friendship in James Potter, Remus Lupin, and Peter Pettigrew. The four friends, also known as the Marauders, joined the Order of the Phoenix to fight against Lord Voldemort and his Death Eaters during the First Wizarding War. Sirius also became the godfather of Harry Potter, son of James and Lily Potter.

Sirius Black as a pure-blood was seen as a "blood traitor," too.

"Blood traitor" is a derogatory term commonly used by elite pure-blood families to describe witches or wizards who sympathise with the non-magical community and/or willingly associate with other such sympathisers or with Muggle-borns. Other similar terms include "Muggle-lover", "Mudblood-lover", "Dunglicker", "Scumsucker", and "Mudwallower", all of which refer disparagingly to those who are comfortable in the company of Muggles and/or Muggle-borns, whom prejudiced wizards and witches believe are dirty and inferior. The most notorious blood-traitor family was the Weasleys.

The message in this blog piece? Be careful on trying to use "parallels" between Hogwarts and deaf residential schools. It can go both ways, blood-purity or not because perspectives do differ. Also, just as well, there are way more "Muggle-borns" (born to hearing parents, English language, ability to speak and listen, use CUED speech, deaf or hard of hearing, do not know sign language, know some sign language, knows a lot of sign language, etc) than there are "pure-bloods" (nth generation Deaf family, ASL as their first language, deaf culture, etc) and that the "Muggle-borns" are growing every day whether they know sign language or not, and increasingly go to regular and mainstreamed schools, and even to private schools just like Hogwarts with school uniforms.

Bottom line, these parallels and fear-mongering nonsense need to stop. If you see "pure-bloods" doing the disparaging, attacking, libeling, hating, name calling, revealing of personal information, bullying or cyberbullying, misinformation campaigning, lying, and/or the deceiving for "the cause" then tell them that they fit nicely into the Slytherin House.  Otherwise I'd just as well drop this whole parallel nonsense comparison as an excuse to attack people and/or other organizations only because they are different and have a different set of philosophy and belief.  Because, you know, if you really want to get down to it  then ask yourself, who won at the Battle of Hogwarts - Voldemort, pure-bloods and the House of Slytherin or Harry Potter, the Muggle-borns, and the House of Gryyfindor, Hufflepuff, and Ravenclaw?

Yeah, better to just drop the whole thing.

For cochlear implant musicians only - a call for panelists

For an upcoming web conference on listening to and making music with cochlear implants in September 2013, the Association of Adult Musicians with Hearing Loss are hosting a panel of adult musicians who wear cochlear implants. The purpose of this is to share with our audiences the very personal and individual experiences of what it is like to make music with a cochlear implant. Below are the criteria we will consider in panelist selection.

1. The panelist must have at least one year of experience with their cochlear implant(s).

2. The panelist must be musicians or music students who are active in music study, as evidenced by practicing on their instrument several times a week and/or taking private lessons regularly.

3. The panelist must be available on Saturday, September 7, from 1-3 pm Eastern time to serve on the panel.

A small honorarium will be given to panelists at the conclusion of the conference.

If you are interested in serving on this panel, please send your name, email address and a brief statement to AAMHL expressing your interest. The brief statement should state why you feel you would be a good candidate for the panel. All statements and contact inforrmation should be sent to info@aamhl.org by March 30, 2013.

Tara Congdon, Blue Ear, Phonak, and Iron Man

Tara Congdon responded to my earlier blog about her recent rant against Marvel Comics and Phonak in a poster campaign with Iron Man.

I agree with Tara's comment that the focus was not on Anthony Smith "The Blue Ear." What I saw was Tara's opinion of Marvel Comics' so called "intention" to push aside or attempt at "devaluing" those who cannot benefit from the use of hearing aids. I found that opinion remarkable which was why I came up with examples of Marvel Comics past characters who are deaf, especially Echo/Ronin, and not wear hearing aids and still be their "best self."

We all use technology to better ourselves with the help of hearing aids, cochlear implants, TTY, cell phone texting, captioning, CART,  real time face to face communication devices, lap top computers, and so on. Anthony Smith is using his own kind of technology to be his "best self” in his own way and that is to wear his blue hearing aid.

I disagree with Tara's contention that Marvel Comics poster campaign tell others that they "are less than whole human beings in their own right" because they are unable to use a hearing aid.  Ironically, if Tara had already been aware, Marvel Comics is known for their characters with varying kinds of "disabilities" such as blindness, mobility impaired, physical disfigurement, dwarfism, one-armed, deafness, and so on.

What is important is the encouragement of kids with hearing loss who can truly benefit from hearing aids to wear them and to not let other kids bully or tease them for wearing their hearing aids. It's an opportunity to educate people about hearing aids. I had to do the very same thing when I was in the 7th grade. I took the initiative to educate my peers about my hearing aids and what it can and cannot do, and my hearing loss.  My hearing aid has actually helped me live better by taking advantage of what hearing loss I have left. I am able to communicate better, listen better, and enjoy better the sound and music.   I agree about the transparency regarding Phonak and audiologists/healthcare professional that Tara spoke of in her article but this isn't about fitting kids who cannot benefit from hearing aids. This is about encouraging those who can and help educate people about hearing aids and hearing loss.

Read Iron Man's message of encouragement to a hard of hearing kid with a hearing aid.

Why no cochlear implant character in Switched at Birth?

Rachel Chaikof has a good blog piece about the lack of cochlear implant characters on the Switched at Birth show.  A show with deaf characters who do not know sign language and prefer to listen and speak. Go and check her blog out now and contribute.

Deaf Girl's Mail without Postage Stamp Arrives at Grandma's house

I'm sure many of you recognize this little deaf girl who sent a letter in the mail to her grandmother but forgot to put a stamp on the envelope as well as the address to her grandmother's house.

A letter sent by a little girl to her grandmother didn’t have any postage or even a name on the envelope. Yet it still got delivered to Utah thanks to the Postal Service. Valerie Welsch, with the U.S. Postal Service, says, “I think that somebody probably figured out it was a child writing and went ahead and let it go through from the goodness of their heart.” From St. Louis to Salt Lake City, with no name and no postage. Katrina Jensen, who wrote the letter, is happy the letter made it saying, “ I was surprised and I feel like something. So I feel like a rock star.” Katrina has hearing trouble, and her parents move her to St. Louis so she could attend the Central Institute For The Deaf. But that took her away from Grandma.

Katrina "Kat" Jensen is the well known deaf girl in the deaf and hard of hearing blogosphere who wears a cochlear implant. Her mother writes about her daughter in her blog called, "Miss Kat's Deaf Journey."Utah television station, KSL, learned about the story and picked it up and interviewed "Miss Kat."


The video below of Katrina Jensen isn't captioned. Complaints about lack of captioning should be sent to KPLR 11 news in St. Louis on their Closed Captioning page.

DYV Disinformation and Fakery

DYV linked to a YouTube video (video seen also at LiveLeak) of a man that was apparently struck by lightning two times in a space of seconds and supposedly lived afterwards with no apparent injury.  I spotted the DYV piece in Deafread. The problem is that DYV claimed the lightning victim wore a cochlear implant. For a victim to put his right hand to the right side of his head isn't proof that he was wearing a cochlear implant. This is nothing more but an attempt to generate misinformation, disinformation and interest on the subject of cochlear implant.  DYV offered no links to sources that the supposed victim is in fact a cochlear implant user or even the fact that he is "hearing impaired."  No links on DYV blogsite to sources that says anything about the victim as a "hearing impaired cochlear implant" user. No interview of the victim. No verification that the implant, if any, was damaged by the strike. Nothing. Nada. Kaput. Pure hokey made up cotton candy fluff that dreams are made of.

I'd say this is a prime example of really bad blogging like a case of bad food poisoning run amok. Now, if DYV attempt to come up with an excuse for blogging about an old, already proven fake video lightning strike and inserting "cochlear implant" as a justification I'll call it BS on his part if that happens. So, don't even bother DYV on producing an excuse to blog misinformation and disinformation claiming the victim to be hearing impaired and a cochlear implant user, and go even further without any supporting evidence or sources saying the cochlear implant was damaged by the strike because it never happened. Pretty wild if not totally irresponsible to pass that kind of junk around. Below is a screen capture of what DYV wrote as proof.

Video is fake, of course. Shadows in front a vehicle that show up shouldn't be there when the lightning bolt should have lighted 360 degrees all around it. The second strike showed shadows to be unlighted just like the first one. All indicative of a fake video. This was an impossibly rare video capture of a man apparently getting struck by lightning two times in a row in virtually in the same spot in such a short space of time, and the guy lived? All that point to an apparent fake video of a lightning strike that was supposedly captured on camera. 

Here is a real and verified video produced by CBS of an (indirect) lightning strike captured on a surveillance camera. The victim was interviewed afterward which add credibility to the story. You have a reputable source that provided tangible proof of a person getting struck indirectly by a lightning strike and surviving it with no permanent or lasting effects. A victim would be darned lucky to survive a direct strike otherwise he'd likely be dead or seriously injured with side effects for the rest of his life. 

5 years later cochlear implant baby revisited

Almost 5 years ago a YouTube video of an 8 month old deaf baby boy that went viral when his cochlear implant was turned on for the first time capturing the hearts of millions of viewers.




When this video came out many in the culturally deaf community weren't as welcoming and some were just down right cruel while some in deaf run discussion forums were intent on banning hearing parents of deaf children with cochlear implants. Most others were more understanding and reflectively mature about such procedures performed at such a young age on a deaf baby.

The Today website revisited the baby boy who was implanted is now 5 years old shared with readers on the some of the things that weren't known about the circumstances surrounding the reason to implant Jonathan at such a young age.

He's also a bit of a miracle. On Christmas Eve of 2007, when Jonathan was just four months old, he contracted bacterial meningitis, an infection of the membranes covering the brain and spinal cord that can result in brain damage or death. He was hospitalized and recovered; however, the infection took a heavy toll on the boy and his parents.

The article goes on to explain that Jonathan uses a walker to assist him with the walking since the bacterial meningitis he contracted gave him the equivalent of cerebral palsy. It has also left him deaf as well. The parents were given a now or never decision on cochlear implantation on the basis that Jonathan's cochlea was ossifying.

"We were in the hospital and because of the meningitis, we only had a couple of weeks to decide if we were going to do the cochlear implant," says Mark. "The cochlea was hardening because of the meningitis. We had a limited window to make a decision and if we didn't make it, it would completely ossify and we would never be able to do the implant in the future."

The Breauxs decided to go ahead with the surgery -- and to post videos of the results on YouTube in order to help other parents going through the same experience.

The parents explained:

"We spent lots of time praying about it," says Brigette. "We didn't know the side effects of the meningitis. We didn't know his physical limitations, if he'd be able to sign. We tried to give him the best quality of life."

Both parents say they're now positive they did the right thing. Indeed. If the boy was faced with the possibility of physical limits brought on by cerebral palsy like condition he should be afforded every opportunity on access to communication and language, and that includes having the cochlear implant.

How is he doing today?

Today, Jonathan is in kindergarten, attends speech therapy three times a week and uses both sign language and speech to communicate with others.

"In the last year, we've noticed his vocabulary is growing," says Mark. "A year ago, he was speaking barely one or two words but now he's combining words and enunciating much more clearly because of the speech therapy and just being able to process what we're saying. I think all of the input -- sounds, speech as well as sign language -- have given him multiple elements for communication."

There is another video that has gone semi-viral of baby girl, Marielle, that was implanted about the same time as Jonathan but received received her hearing aid at 3 month, and cochlear implant at 2 1/2 years old.

She is now 6 years old and can speak and read better than majority of her classmates at her neighborhood school. In the YouTube video the parent left a caveat for those haters in the pro-ASL/anti-cochlear implant camp:

Before posting any ill informed comments - she has been exposed to both ASL and cued speech but prefers speaking.

The girl was given three communication options, 1) ASL, 2) Cued Speech, and 3) speaking. It's not a wonder that the girl prefers to speak.  Yet, I think it's good to combine both cochlear implant and sign language at an early age so you have the best of both opportunities and language acquisition.

The vilification of Dr. Karl White

Generally, I'm not surprised by the utter hate and vilification that get thrown at Dr. Karl White by some in the culturally deaf community only because this is to be expected, unfortunately. This is true even in a YouTube video he was in recently. Dr. Karl White holds a different opinion when it comes to helping parents of deaf children and the Early Hearing Detection Intervention for babies that he supports. As a result on the differences of opinions when it comes to deaf children charges against Dr. Karl White run the gamut of "verbally attacking" culturally deaf people to calling deaf protesters as "terrorists" to accusing him of blocking submissions of papers on ASL at EHDI conferences.  All this even though Dr. Karl White is fluent in sign language. 

There are a place and time to agree to disagree and state your case but to vilify Dr. Karl White with slander and character assassinations won't go anywhere. Hearing parents will see these vile attitudes and see them as deaf zealots and assume the worse thinking the culturally deaf community acts like that and are nothing more than a group of people with extremist attitudes. Not exactly an ideal way to boost the image of the culturally deaf community.

Instead of throwing temper tantrums it'd be better to be more involved in the EHDI process and help spread awareness just like Dr. Beth Benedict has been doing.

It was established ten years ago, and not one deaf person attended the first conference in Atlanta, Georgia, where the latest conference was also held. Dr. Beth Benedict, a Communication Studies professor at Gallaudet University, heard about the EHDI conference, went to the second one and has been a loyal attendee ever since. She and the Alpha Sigma Pi fraternity hosted three workshops on EDHI, explaining how you can become involved and what you can do to spread awareness. 

That is a much better alternative than going online on YouTube just to piss and defecate every where in the comment section about Dr. Karl White like some 3 year old kid not yet potty trained.That's not spreading awareness. That's being petty and immature. Spreading awareness in the most positive light about sign language, early detection and intervention for babies born with hearing loss are what get hearing parents' attention. And certainly by not acting immaturely.

Karl White's Speech at a TEDx Event on ASL and Speech/Listening

Here is a captioned video (Establishing a Sound Foundation for Children) of Dr. Karl White who is a Professor of Psychology at Utah State University and the founding Director of the National Center for Hearing Assessment and Management (NCHAM) presents a talk about newborn hearing loss detection and early intervention, deafness, ASL, speech, speech intelligibility, listening, hearing aids,
and and cochlear implants.

 


In one examples Dr. Karl White provided in the video was two young boys (around 5 or 6 years old) with their cochlear implants and the level of speech intelligibility they have virtually indistinguishable from other typical hearing boys. Dr. Karl White also acknowledged the importance of early use of ASL as well for parents who choose sign language. And provided a video of two deaf boys (approximately 3 years old) sitting in their car seats signing to their parents and to each discussing what they see outside of their windows like a passing airplane. Cute video. Dr. Karl White is recognized as one of the world's leading authorities on early identification and treatment of hearing loss in infants and young children. He has hundreds of publications and presentations at scholarly meetings, and has been invited to more than 30 countries to assist in the implementation of newborn hearing screening and intervention programs. His work has been recognized with awards from such diverse organizations as the Deafness Research Foundation, the American Association for Speech Language and Hearing, the Swedish Society of Medicine, the Alexander Graham Bell Association for the Deaf and Hard of Hearing and the Ali Yavar Jung National Institute for the Hearing Handicapped in India. He also serves on many national and international advisory groups and boards for organizations such as the World Health Organization, the Coalition for Global Hearing Health, the United States Department of Health and Human Services, March of Dimes, the American College of Medical Genetics, and the American Academy of Pediatrics.

When Hearing Aid Companies invest in Regenerative Medicine on Cure for Hearing Loss

It was a matter of time when hearing aid or cochlear implant companies decide to invest in promising pharmaceutical companies on developing a drug that can either prevent further hearing loss or restore it.

One intriguing possibility for the future is the convergence of future drugs and devices. Hearing aid manufacturers have certainly not been deaf to the noises from the pharma sector. 

Sonova, the world's largest maker of hearing aids, has invested in two start-up companies - one in the United States for drugs to protect hearing and another Swiss biotech working on a treatment for acute tinnitus. 

It bought U.S. cochlear implant manufacturer Advanced Bionics in 2009 in a bid to increase its focus on the inner ear and understand how drug treatments could work with implants. 

"It will be interesting whether the innovation will be driven by pharma companies moving in or whether the hearing aid companies will branch out," said Auris' Meyer.

More and more investors are paying more attention to pharmaceuticals or biotech firms who look promising on developing drugs that target the cochlea on the restoration or improvement of hearing loss.

U.S. giant Pfizer is arguably the most advanced of the big players, with a drug in initial Phase I clinical testing trial for age-related sensorineural hearing loss that looks to enhance the function of existing hair cells.

Some of its biggest rivals are laying bets, too. Last year French drugmaker Sanofi inked a two-year research deal with privately held Dutch biotech firm Audion Therapeutics to develop small molecule drugs to improve hearing.

In October, Roche joined forces with venture capital firm Versant Ventures and biotech Inception Sciences to find molecules targeting ear hair cell protection and regeneration in the cochlea, the spiral-shaped cavity in the inner ear.

Cross-town competitor Novartis, meanwhile, struck a 2010 deal potentially worth more than $213 million with U.S. biotech GenVec to develop gene-based treatments to replace hair cells in the ear that transmit sound.

"We're looking at restoration as our main line of work and we're interested in whether there are chemicals that might also play this role instead of having to introduce a gene," said Novartis research head Mark Fishman.

The question why are they investing time, resources and money for a drug that could revolutionize regenerative medicine in the field of sensorineural hearing loss? The answer is simple. The returns on their investment would be huge.

But the science is developing and investor interest is growing, piqued by the huge commercial success of recent new treatments for sight loss, such as Lucentis from Novartis and Roche and Eylea from Regeneron and Bayer. 

British charity Action on Hearing Loss conservatively puts the potential Western market for new drugs at $4.6 billion a year - a figure that could grow quickly as ageing populations swell the ranks of those with hearing problems.

With each progressive successes such as restoring some of the hearing loss in gerbils will only embolden and encourage investors to help speed up the search for a regenerative medicine for the restoration of hearing loss. It would only be a matter of time in several years time rather than decades until success in the field of regenerative medicine on sensorineural hearing loss would be realized and capitalized.  In the inexorable march towards on the cure for sensorineural hearing loss will continue to march forward and unabated. The writing is on the wall.

Tale of a hypocrisy and Marlee Matlin

News is still reverberating about the latest development on the treatment for hearing loss when gerbils in a laboratory were deliberately made deaf had their hearing loss reversed using human embryonic stem cells.

The stem cells were used to make immature nerve cells. Those were then transplanted into the deaf ears of 18 gerbils.  

Ten weeks later, the rodents' hearing ability had improved by an average of 46 percent, with recovery ranging from modest to almost complete, the researchers reported.

Not totally a cure yet but certainly in that direction that hearing loss or nerve deafness can certainly be reversed.  A key conceptual working model demonstrated here using the medical knowledge and technique that can readily be applied on humans, and that adult stem cells would be used as well.

With that news Marlee Matlin was asked about the medical break through with stem cells.

“Think about this. What if someone told you that you could’ve been made different than the content person you are with genetics. Would you? Now think how millions of deaf people who lead productive lives, would feel when told that babies born deaf can be ‘cured’.”  

Matlin also told followers, “Be proud of who you are, regardless of what people think is a “handicap” or “normal.” Normal is what you want to be. Don’t let anyone tell you who or what you should be.”

The problem here in reference to the yellow highlighted part above is that parents of deaf or hard of hearing babies have the parental and legal right to make an informed decision regarding the use of stem cells to reverse their baby's hearing loss once that procedure becomes safely available. They can either go forward with the treatment or reject it. And odds are quite high that most parents will prefer to opt for the stem cells treatment than to forego it. This would be absolutely true when we have someday stem cells that can reverse blindness or low vision condition would parents opt for that treatment for their blind or low vision babies. Chances are high that culturally deaf parents of a deaf/blind baby would stop at nothing to see that their baby get the stem cells treatment for blindness but not deafness when they value more on vision than hearing. Just as any parents would see any other medical condition would they like to see reversed for their babies. A hypocrisy in action folks. In fact, there wouldn't be any outcry from the culturally deaf community if there was a stem cells treatment that could reverse vision loss in babies, children, teens and adults.

But here's another "hypocrisy" about Marlee Matlin's. She champions for the donation of free hearing aids to deaf and hard of children around the world with the Starkey Hearing Foundation. I think this is great! In fact she regularly attends this annual gala event called, "So the world may hear." This year's gala 2012 event raised a record $7.6 million dollars and had many notable celebrities like:

President Bill Clinton, Maria Bello, Robin Williams, Marlee Matlin, Billy Crystal, Forest Whitaker and Sammy Sosa attended this year's Awards Gala, which raised a record $7.6M. But the biggest star was the power of hearing.

And yet she warns us about stem cells treatment for hearing loss? What's her stance on stem cells treatment for curing blindness or low vision in babies?

The power of hearing. Yes, that's a strong draw and reason for people to support on finding ways to alleviate hearing loss. Even Lou Ferrigno (who received his Esteem Envoy implantable hearing aid) and Gary Busey (Marlee Matlin confronted Busey his hearing loss that he needs to get a hearing aid seen in the Celebrity Apprentice show by which $1 million dollar was raised for Starkey Hearing Foundation) who were at the gala event as well. It won't be long until celebrities support for the cure for hearing loss through stem cells treatment.

Now, here's the irony.

Marlee Matlin is perhaps unwittingly helping people understand and value the power of hearing for several years by attending the "So the World May Hear" gala annual event that began in 1984 and supports the distribution of free hearing aids to children around the world. Deaf and hard of hearing children around the world with their free hearing aids are getting a taste of that power of hearing and experience the joy of being able to hear sound.  And with that taste in mind already experienced they certainly would want to opt for stem cells treatment to reverse their own hearing loss if they had that choice and the means to do so.

Now, I'm sure some in the culturally deaf community would express their shock and outrage over this but let me remind some of the culturally deaf people that the bulk of their community do wear hearing aids and cochlear implants. Look around whenever you are with a group of deaf and hard of hearing friends. How many of them are wearing hearing aids and cochlear implants? Why are they wearing hearing aids? Why cochlear implants? What makes you think they would not want to opt for stem cells treatment to reverse or simply improve their own hearing?  What makes you think they would not support parental rights to make an informed decision to provide stem cells treatment to reverse hearing loss for their deaf/hh babies?

So, who is really showing the hypocrisy here?

Is the death of culturally deaf community that far behind? Or is it just plain paranoia? 

The right not to be Deaf or not?

I visited Patti Durr's blog on one of her 6 part series "The Right to be...Deaf" and what I found interesting was the Part V discussion with Joseph Pietro Riolo and the 41 comments written there. Joseph Pietro Riolo's comments were insightful with his wickedly smart comments. I'm combining those recent discussions of Joseph's with that of Patti's recent June 2012 blog on preventing language deprivation in deaf and hard of hearing children.  It is a recent proposal to NAD on the effort to get federal and state governments to intervene on Parental Rights to make informed decisions for their deaf/hh children seen in their proposed model (PDF file):

Proposal: The NAD shall set up a Headquarters Ad-Hoc Committee to look into developing model state and federal legislation to prevent language deprivation.

The Committee shall be comprised of individuals with expertise in various relevant areas including legal, educational and socio- and neuro-linguistic development to look into the possibility of making liable actions that causes harm to Deaf children as a result of the deprivation of American Sign Language and develop model state and federal legislation for such liability.
 
The committee should also look into developing model state and federal legislation that would require medical and audiology personnel to refer deaf infants/children and their families to American Sign Language instruction and education prior to undertaking any medical procedure that may presume to provide hearing.

The committee should also develop a strategy for the adoption of these legislation including identifying which states may be most favorable as early adopters of those legislation.
 
This is to be an ad-hoc Headquarter committee reporting to the CEO. A full report including the first draft of a model legislation must be completed by December 1, 2013.

What was interesting is that in the proposal it stated that:

"The NAD shall set up a Headquarters Ad-Hoc Committee to look into developing model state and federal legislation to prevent language deprivation." 

But looking further into the proposal it went from "prevent language deprivation" to the the more specific prevention on the deprivation of American Sign Language by requiring parents to be referred to ASL prior to any cochlear implantation or use of hearing aids.

 The committee should also look into developing model state and federal legislation that would require medical and audiology personnel to refer deaf infants/children and their families to American Sign Language instruction and education prior to undertaking any medical procedure that may presume to provide hearing.

Yet nothing about requiring parents to look into other types of visual language such as SEE or Total Communication which uses a visual language of the English language done in a signed format. No other points were made about other visual language or other supporting inputs such as SimCom, Cued Speech, Signed English and contact languages.

Now,  I'm against any language deprivation for children whether they are hearing, deaf, or hard of hearing. A child's brain crave communication and language inputs whether it's by spoken or visual language. Even Dr. Ron Stern commented in his presentation that any language deprivation is disabling whether it's sign language or the spoken language it does not matter since the brain does not discriminate and craves input. Which means children with hearing aids and cochlear implants can and do get their language inputs via the spoken language.  Just as well in the latest Italian study on 2 months old to 24 months old deaf children who got their cochlear implants showed that those under 6 months were able to develop excellent language and communication developments on par of their hearing peers. Early intervention works as long as parents are actively involved in the language and communication developments just like the parents have done for the little deaf girl Lotte of Norway who can speak 3 languages. 

As for Joseph Pietro Riolo (JPR) he made some very salient points and asked the important questions when it came to Parental Rights for their deaf or hard of hearing children as seen in Patti's blog Part V series . I'll use some of Joseph's points and comments in this blog by highlighting them. What really boils down to is that parents do have the right to decide on how to raise their deaf child in terms of mode and mean of communication and language acquisition. They just need help in the category of getting the right information in an unbiased manner in order to make an informed decision.

First, let's talk about the article “And the ears of the deaf shall be unstopped: An Examination of the Cochlear Implant From a Jewish Bioethical Perspective” by Rabbi Darby Jared Leigh whose last paragraph makes a conceding point in support of  parents making a decision on cochlear implant.  Commenters tried to use Rabbi Leigh's same article to "prove" their case saying it is "a moral violation to do surgery on a healthy body" per the Jewish religion:

“A consolidation of these views leads only to the idea that from a Jewish perspective we ought not to impose opinions on the people who must make a decision vis a vis the cochlear implant, namely, the parents or legal guardian(s) of deaf children. The responsibility of Jews with respect to the cochlear implant is only to make sure that individuals considering this medical procedure have access to all of the relevant information from the medical community, the Deaf community, and from within Jewish tradition. Once this is done, others should step back and respect the divine image within those individuals, and allow them the space and freedom to reach their own conclusions and make their own decisions.”

JPR makes a comment regarding the last paragraph and I agree with his assessment, too.

This paragraph actually supports the decision to put cochlear implant in a deaf child if his or her parents decide to do so. Also, it supports the decision not to put cochlear implant in a deaf child. In other words, there is nothing wrong with putting or not putting cochlear implant in a deaf child.

Certainly, nothing wrong with putting or not putting cochlear implant in a deaf child as long as parents are adequately informed. Parental rights are ensured here in allowing them to make the necessary and informed decision for their deaf children.

JPR used The Universal Declaration of Human Rights in Article 26(3) to point out that parents have a parental right to choose for their children:

“Parents have a prior right to choose the kind of education that shall be given to their children.” 

And argued that it:

"strongly suggests that the parents of a deaf child can choose the pure oralism for the deaf child." 

So it goes that there is nothing in the The Universal Declaration of Human Rights document that states that Parental Rights would be overridden by the right of a deaf child to be culturally deaf. In fact, there is no mechanism to enforce the right of a deaf child to be culturally deaf over Parental Rights, and there shouldn't be a mechanism to ensure that due to numerous inherent problems as JPR explained why.

How a person is supposed to do when he or she sees that the right of a deaf child to be culturally Deaf is violated? Is he or she supposed to report the violation to police? Is he supposed to report the violation to Child Protection Service (or similar agency)? Is she supposed to report the violation to National Association of the Deaf, Deaf Bilingual Coalition or similar organization that will send a legal team to defend the right of the deaf child? Is he supposed to report the violation to any organization that focuses on human rights? After the violation is reported, how is the right supposed to be enforced? Does this mean that the parents are to be ordered by court or governmental agency to respect, maintain and support the right of the deaf child to be culturally Deaf? What will happen if the parents still refuse to do that?

Indeed. Lots of problems once that Pandora Box is opened.

But let's look at the "Convention on the Rights of Persons with Disabilities" again. In a proposal to NAD they stated their rationale on why state and federal governments should intervene on Parental Rights.

Rationale: Past attempts through the educational system to ensure that Deaf children are not isolated and linguistically deprived have experienced extremely limited success. Alternative approaches needs to be fully explored.

This motion is timely because the United Nations developed and adopted the Convention on the Rights of Persons with Disabilities (“CRPD”) to advance equality further throughout the world. The CRPD makes repeated specific references to the deaf community and sign language in its text.

However, in CRPD document it states that no obligation is required of the parents to use sign language with their deaf children. In other words if parents choose pure oralism without using a signed language approach for their deaf child, the parents do not violate anything in that document supported by the United Nation. Although in the document it does require governments to accept and recognize the use of sign languages as seen in Article 21(b) and (e):

(b) Accepting and facilitating the use of sign languages, Braille, augmentative and alternative communication, and all other accessible means,modes and formats of communication of their choice by persons with disabilities in official interactions;

(e) Recognizing and promoting the use of sign languages.

Also in Article 24(3)(c) it states:

“Ensuring that the education of persons, and in particular children,who are blind, deaf or deaf/blind, is delivered in the most appropriate languages and modes and means of communication for the individual, and in environments which maximize academic and social development."

Note the underlined bold in the above which could mean to include CART services, FM loop, sign language (ASL, PSE, SEE, what have you), speaking and listening, and so on. There are a variety of ways that can meet those assurances.

In Article 30(4) it points out for people with disabilities on the

“recognition and support of their specific cultural and linguistic identity, including sign languages and deaf culture”

As far as I can tell there is nothing in the document (Convention of the Rights of Persons with Disabilities) forbidding the parent’s right to choose pure oralism, ASL, SEE,PSE, SE, SimCom, contact language, manual alphabet, cued speech, Total Communication and such. Just as well there is nothing in the  document that showed any support of governments to actively suppress the use of sign language through laws, governmental actions and so forth, either.

In fact, JPR pointed out an all too apparent of an obligation and concluded that,

"a government has the obligation to deliver education in the modes and means that agree with pure oralism. What the governments cannot do is that they cannot suppress or exclude any modes, means or languages when the parents of children with disabilities want them or ask for them."

And that's the bottom line when it comes to governmental intervention, which is already limited for a reason, on language and mode of communication and that such a decision is still within the parents' rights.

Next in the proposal to NAD they made a claim about cochlear implant and deaf children.

Today, 80% of children born deaf in the developed world are implanted with cochlear devices that allow some of them access to sound in their early years, which helps them to develop speech.

That 80% statistics comes with no references although in Norway the implantation rate is much higher at 90% to 95%.

Every year approximately 40 deaf children are born in Norway. Approximately 90 to 95 % of deaf children in Norway are offered a cochlear implant (CI) in one or both ears. CI is an advanced hearing aid that helps children to perceive sound. Children with CI have special follow-up needs and their parents have to decide preferred communication mode for their child. In Norway, there are mainly three approaches: use of both spoken language and sign language (bilingual communication), spoken language with sign support or spoken language alone (oral communication).

Yet I believe that in the United States we are no where near that rate, not even at 80%. Some developed countries are more active in getting deaf children implanted such as Norway. As for the United States according to the FDA via the NIH webpage:

According to the U.S. Food and Drug Administration (FDA), as of December 2010, approximately 219,000 people worldwide have received implants. In the United States, roughly 42,600 adults and 28,400 children have received them.

And that's to date since 1990 when first introduced to children. About 1 in 1000 babies born is profoundly deaf each year in the United States. Over 4 million babies are born each year which leaves about ~4,000 babies born profoundly deaf each year where perhaps 88,000 profoundly deaf babies have been born since 1990.  About 1/4 of them or about 25% have gotten their cochlear implant so far. As for European countries the implantation rate comes in around at 70%. In Canada it is estimated that approximately 174 deaf children receive cochlear implants each year though no estimates on the number of profoundly deaf babies that are born each year yet Canada's population is roughly 1/10th of the United States so it perhaps reasonable they have the same cochlear implantation rate as the United States.

Ok. Onward to "genocide." Ghastly, ghastly term!

Patti essentially stated that by denying ASL to deaf children it would  be considered as an "act of genocide" per the Convention on the Prevention and Punishment of the Crime of Genocide." But according to the "Convention on the Prevention and Punishment of the Crime of Genocide" it says nothing of the sort.  JPR elaborated: 

Again, if the parents of a deaf child decide to exercise their right to put cochlear implant in the child and to use the pure oralism when raising the child, they do not violate anything in the Convention on the Prevention and Punishment of the Crime of Genocide.

The only thing in the document that seems to be related to the topic on hand is the term “mental harm” as in “Causing serious bodily or mental harm to members of the group;” (Article II(b)). Although the enumeration of groups does not include linguistic groups (“In the present Convention, genocide means any of the following acts committed with intent to destroy, in whole or in part, a national, ethnical, racial or religious group, …” (Article II)), I will assume that the enumeration is broad enough to include the linguistic groups that include Deaf culture.

It may be possible that some people will attempt to argue that depriving a deaf child of ASL is equivalent to “mental harm” on the child. However, the child is usually not a member of Deaf culture if the parents are hearing or are of the Hearing culture. Just because a child is deaf does not mean that he or she is automatically a member of the Deaf culture. In this interpretation, the parents do not violate anything in the convention if they decide to raise their deaf child in a Hearing culture without using sign language.

Two points here as seen in the above underlined bold words. First, there is no intent, systematic or otherwise, to rid or destroy the use of ASL or sign language. Utterly a fantastical if not an unnecessary paranoid belief.  Second point is that a deaf child born into hearing parents is not automatically a member of the deaf culture. So no use in trying to call deaf babies as "Deaf babies" since the term "Deaf" with the upper case "D" has always denoted to mean culturally deaf people. According to Carol Padden and Tom Humphries, in Deaf in America: Voices from a Culture (1988) explains the meaning and difference between "D"eaf and "d"eaf:

We use the lowercase deaf when referring to the audiological condition of not hearing, and the uppercase Deaf when referring to a particular group of deaf people who share a language – American Sign Language (ASL) – and a culture. The members of this group have inherited their sign language, use it as a primary means of communication among themselves, and hold a set of beliefs about themselves and their connection to the larger society. We distinguish them from, for example, those who find themselves losing their hearing because of illness, trauma or age; although these people share the condition of not hearing, they do not have access to the knowledge, beliefs, and practices that make up the culture of Deaf people.

Some organizations even attempted to change that very definition by inserting "Deaf" into their own bylaws without giving any real definition to it and could easily be construed to mean only culturally deaf people. Over the last three decades Deaf (culturally deaf) people have made it a point that they "own" that word and for it to mean explicitly one thing, a group that uses ASL and have a culture.  And that brings up an important consideration about raising a deaf child in a hearing culture without using sign language because doing so does not necessarily violate any of the articles or documents I provided in this blog thus far. 

Below JPR explains and clarifies his position which mirrors much like mine in a lot of ways.

1) It is always my personal position that any deaf child – actually, any child – should have the freedom to sign (not just ASL or any natural signed languages but also SimCom, Cued Speech, Signed English and contact languages). But, I would never want to impose my position on any parents. I would write a true story about a deaf child being punished for signing at home; I would write an opinion article criticizing some parents who do not allow their children to sign; I would make a film that tells about a deaf child who run away from draconian parents who do not let him or her to sign; I would search for grants to research on deaf children who are not allowed by their parents to sign; if I were a professional, I would confront the parents and inform them that they are going too far in not allowing their deaf children to sign; and so on.

But, I would never want to create a new right for a deaf child to be culturally Deaf. When we create a new right for a deaf child, we are eroding the parental right. This will give a precedent for the majority (read: Hearing culture) to create another new right for a deaf child to have the access to spoken language through cochlear implant and doing so erodes parental right further more. If the parents of a deaf child refuses to put cochlear implant in the child, the majority will say, “See, any deaf child has the right of access to spoken language and therefore, your child must have cochlear implant. Never mind your parental right to decide how to raise your deaf child. After all, you want bilingualism. Giving cochlear implant to your deaf child will help bilingualism. Your child will have both ASL and the spoken English language. More power to bilingualism!” The deaf child is taken away from their parents for surgery at an undisclosed hospital.

I may go too far in describing the above scenario but it can happen. It is not hard to predict that cochlear implant technology is getting better and better and the success rate is increasing steadily. Before, the success rate was around 1/3 (33%). Now, it is around 1/2 (50%). Maybe, by the year of 2015, the rate may go up to 2/3 (66%). Maybe, by the year of 2020, the rate may go up to 3/4 (75%). It is very tempting for the majority to override the parental right and go directly to the deaf children and have them receive cochlear implant in spite of the objections from their parents.

Creating a new right for deaf child may be cool now but it could give a new precedent for the majority later on.

In other words, be careful on what you ask for on trying to get the governments to override Parental Rights because it just may backfire.

In my own clarification, I'd be wary of allowing the idea that government be given the consideration to force parents with deaf/hh children on issues regarding sign language, cochlear implant, oral/aural routes and educational upbringing.  Removing Parental Rights is not the answer. Parents have the right to make an informed decision regarding their deaf/hh child when it comes to mode of communication, the means, language development, and educational upbringing. All we can do is provide all the necessary information for parents and provide them them the necessary resources and support so they can make an informed decision. Just as Rabbi Darby Jared Leigh said previously on parents making an informed decision:

Once this is done, others should step back and respect the divine image within those individuals, and allow them the space and freedom to reach their own conclusions and make their own decisions.

And so there you have it.