Hearing Restoration Project cure for Hearing Loss

Our Mission: Hearing Health Foundation is the largest private funder of hearing research, with a mission to prevent and cure hearing loss through groundbreaking research.  Since 1958 Hearing Health Foundation has given nearly $30 million to hearing and balance research, including work that led to cochlear implant technology.  In 2011 Hearing Health Foundation launched the Hearing Restoration Project (HRP), a consortium of scientists working on cell regeneration in the ear.  HRP's goal is a biologic cure for most types of acquired hearing loss within the next ten years. Hearing Health Foundation also publishes Hearing Health magazine, a free consumer resource on hearing loss and related technology, research, and products.

With your help, we can make hearing loss a thing of the past.

http://hearinghealthfoundation.org/our-research-plan

Join or donate for the upcoming Nov 3, 2013 marathon race in NY for the cure on hearing loss.

Or read their latest Fall magazine.

If cure for hearing loss isn't your thing then perhaps help find a cure for vision loss where blind mice own blindness were successfully restored with stem cells. The restoration of blindness is now within our lifetime.

When hearing aids benefit deaf/hh children

While growing up at around age 6 or 7 years old I received my second hearing aid after having worn out my first one that I had since age 2 1/2 years old. It wasn’t the behind the ear hearing aid but a body aid. I’ve gotten a lot of good mileage out of my old hearing aids. Obviously so because without that hearing aid of mine I wouldn’t be here where I am today. Successful and thankful with what residual hearing I had left though not perfect. It has helped me with my ongoing ragtime piano playing ever since I was seven years old. I am proud of all of my past hearing aids I've worn because each one of them I have used it with great benefit. I even remembered how I enjoyed using my hearing aid when I was little because it gave me access to the world of sound, music and voice around me. It took awhile to realize that hearing is a precious thing and a gift even if I couldn't hear perfectly. It was perfect enough for me with the help from the hearing aid technology. I even have a drawing I did when I was around 5 or 6 years old showing me as a happy kid wearing the body hearing aid. There was a time or two when I didn't like wearing my hearing aid but that phase quickly passed once I realized how important my hearing aids were to me.

Below is a picture of my old body hearing aid inside a protective case . It’s a Zenith. Along with a Battery Membership card, and a special yellow button that has as special message.

It’s so well preserved though I am sure my old hearing aid can work if I put in the right kind of battery.

Pretty fascinating on how hearing aids (even cochlear implants) have helped so many people with hearing loss. Isn’t technology great? And perhaps someday hearing aids will become obsolete with the help of biotechnology that have the ability to restore sensorineural hearing loss. It's not a matter of if but when. That day is coming whether in my lifetime or not.

NAD 2020 Vision: Corrective Lens Needed

NAD 2020 Vision is purely about the culturally deaf agenda and nothing more. They have consistently served most of their interest to the side of the culturally deaf community (estimated population 600,000) rather than the deaf and hard of hearing communities at large that make up 98% of all people with hearing loss (est. 35 million). NAD should be titled "NACD" or National Association of the Culturally Deaf because members and staff are culturally deaf.

None of their vision outlines the right of deaf and hard of hearing people to speech and sound. Although they do outline an objective to protect every individual's right to visual communication in the U.S. which can include captioning, Cued Speech, and even Signing in Exact English but that's just a guess because for all we know they probably only support the captioning part (i.e. real time captioning, CART, movie captioning, etc).

The Vision 2020 do not even acknowledge that there are educational programs that combine signing and speech. And what's more they blatantly left out the rights of parents to make an informed decision regarding their children with hearing loss whether it's bilateral or unilateral mild, moderate, severe  or profound hearing loss.

I'd say every child born with a hearing loss has a right to visual communication access which can mean Cued Speech, ASL, SEE, PSE, lipreading, captioning, etc. Just as well there are many children born with both hearing and visual loss that they should have a right to both visual and verbal/sound communication access as well. There are babies born with one of the condition and may gradually lose the other condition such as late deafened or late vision loss. So, in reality every individual's right is to both visual and verbal communication in the U.S. because frankly nobody is born with the exact same condition . NAD's 2020 Vision is purely a culturally deaf agenda promoting only one visual communication access, ASL, as the only acceptable language. There are visual and spoken language that every child born with a hearing loss should have access to. The rest is up to the parents to make an informed decision on what to do for their child.

NAD continues to play the game of political correctness to the whims of culturally deaf people and their ideals.

The attacking of Rachel Kolb

I'm not surprise but there are some people who will attack a deaf person for his or her communication preference or approach such as depending on lip-reading to communicate. Rachel Kolb wrote a well written piece in the Stanford Magazine back in March about her life growing up as a deaf person who learned to lip-read to get by.

Lipreading, on which I rely for most social interaction, is an inherently tenuous mode of communication. It's essentially a skill of trying to grasp with one sense the information that was intended for another. When I watch people's lips, I am trying to learn something about sound when the eyes were not meant to hear.

Lip-reading is a skill that not all deaf or hard of hearing people can master. Some do have that skill born out of necessity in the effort to communicate with hearing people.  She has a choice in choosing her mode of communication, nowadays.

Sometimes I feel guilty that I lipread at all. I fear that I am betraying myself by accepting the conventions of the hearing world. I fear that I lack balance—that I am abandoning the communication tactics that work for me, in order to throw myself headlong at a system that does not care about my needs. When I attempt to function like a hearing person, am I not sacrificing my integrity to a game that I lack the tools to tackle, a game that in the end makes me look slow or stupid?

Deaf people—meaning Deaf people who live solely in the Deaf community, and hold on to an inherent pride in their Deafness—often speak of communicating as they please and letting the hearing world "deal with it." They believe in the beauty and, dare I say it, the superiority of sign language. Spoken language, compared with the visual nuances of signing, might as well be caveman guttural grunts.

When I lipread, I leave the clarity of sign language behind. I attempt to communicate with hearing people on their terms, with no expectation that they will return the favor. The standards I am striving for seem ridiculous: I am trying singlehandedly to cross the chasm of disability. Might not my stubbornness be of more harm than good?

I struggle with this. Some days I wonder what it would be like if I refused to speak. I could roll out of bed one morning, decide to take control of my communication on my terms, and make everyone write it down or sign, as other Deaf people do. Some days I resent myself. I wonder if I am weak, ashamed or overly anxious to please.

Although those comments above were not really the reason why some deaf people, most likely culturally deaf, attacked her for that but about how Rachel felt validated and vindicated on being able to use her lip-reading skill at age 12 :

I am 12 and at a summer camp for the deaf. The entire group has just gone whitewater rafting and is stopping to get ice cream. My peers line up by the counter, signing to each other about the flavors they want. I smile and join, finding the conversation perfectly normal. But when the clerk speaks to us, the other kids freeze like mice after the shadow of a hawk has swooped over the grass.  

With a jolt, I realize that they have no means with which to understand this hearing woman. Most do not speak, go to deaf schools, have never had reason to learn to lipread. Their barrier is the same as mine, but completely—instead of partially—insurmountable.  

"What did you say?" I ask the store attendant, looking her in the eye. My voice feels thick from disuse, but still I am aware of its clarity. The other kids stare at me, their hands slack.  

"I said, would you like a free sample?" the attendant says. I understand her and sign the message to the others. They nod, and sign which flavors they want to taste. I repeat, speaking, to the attendant.  

After the ordering, when I finally sit down, my own ice cream in hand, I feel strangely lightheaded. This—being able to endow spoken words with meaning, rather than having them translated by somebody else—is new for me. Because I have so often felt powerless, I have never realized the power that I possess.

It took awhile until the attacks came seen in the comments after many positive comments were made seeing her as a role model in the deaf community.  Seriously, she is seen as a role model in the deaf community whether you like it or not. Others saw her comments as something disruptive and negative in the culturally deaf community. As always, perspectives vary.

Michelle L. Westfall:

Lastly, it's painfully clear to me that the writer has issues with her Deaf identity and is ashamed of being Deaf. How sad. Even worse...it's clear that the writer has been trained by the hearing society that she owes them problem-free communication, and that it's her responsibility to ensure that they never feel uncomfortable and her task to make sure that they never misunderstand her. Wrong on all counts. Communication is TWO-WAY PROCESS and does not lie with *one* person. Dump your misguided guilt, Rachel. You owe them nothing.

Michelle's comment was a bit misapplied if not done in a derogatory way in Rachel's case.  Rachel didn't feel that she owed the hearing society problem-free communication but rather that she attempted to cross the chasm of her own disability by single-handedly reaching out first by speaking and using her lip-reading skill to communicate. There is a difference. Rachel is attempting to enlighten people about her struggles, her fears and hopes. She does explore about herself why she continues to lipread rather than ensuring that she gets the full communication access even though she knows sign language. No use in dumping on Rachel about some supposedly guilt complex of hers.


Meme H. Kerr:

Now, Kolb's comment about discovering the power after the ice cream shop incident, she's basically taking the power away from the other Deaf kids. I've found their reaction hard to believe because we're so used to hearing people talking to us. Well, if that's really the case, then blame on their teachers or parents for not teaching them to find a way to communicate, rather than to rely on someone else to facilitate the communication. Spending time trying to figure what people are saying is a total waste of time. Getting out pen and paper is relatively a simple task. Apparently, many people are either illiterate or lazy. Kolb, you're doing more harm than good, really. You're only perpetuating dysfunctional & paternalistic thinking in hearing people.

I don't see how that day Rachel took "the power away from other Deaf kids" that day. It just happened that day when she was 12 years old. Not much to read into that. Kids were unable to understand what a hearing attendant was saying and so she was able to help them out. The deaf kids were happy to get their ice cream in short order. Kerr is making a mountain out of molehill. Kolb was simply describing her experience when she was 12 years old at a summer camp for deaf kids. As for lip-reading it might be a waste of time for you to figure out what people are saying but not so for others who may have that skill. Personally, it'd be a waste of my time myself to try and lip-read since I communicate much more effectively with my hearing aid on. 

I saw no paternalistic thinking in what Kolb was expressing. She already knows sign language and happens to be a good lip-reader. No big mystery.


John Pirone:

I believe that the statement. "I have never realized the power that I possess.." defeats what you are trying to tell us.  You explain in detail how frustrating you are with the ineffectiveness of lipreading yet now you are grateful for having that "skill" just because you feel the power of using it.

Rachel's article about her struggles growing up as a profoundly deaf person was not "defeated" when she explained on how she felt for the first time that her lip-reading skill were validated that day at age 12 yeas old. She was conveying a realization at the time how she felt vindicated when she discovered she could help others with her lip-reading skill. Nothing more to read between the lines or form conspiracy theories. She simply expressed what she felt that day. Instead, John gets bent out of shape about Kolb's story when she was 12 years old and what she felt at that time.  Just as well, there is nothing wrong with feeling grateful for having a particular communication skill and be able to use that.  Not just a "skill" but a good skill at that.

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.

The Dangers of Cultish-like Behaviors

Over the years I have seen this red flag go up again and again from certain groups of deaf people or even certain deaf run organizations that exhibit certain cultish-like behaviors.  I don't believe that these groups or organizations are cults at all. Just that there were some warning signs that could signal a deeper problem in their effort to control ideological thoughts and actions.

Just an observation of mine.

The year 2006 was the start of Unity for Gallaudet University protest (DPN2) when new array of dazzling terms suddenly appeared all of which reminded me of cult-like speak. These new terminologies were tossed around heavily early on and over the next 5 to 6 years to be used as a weapon of choice against those who disagree or have a different viewpoint or opinion. Terms like "deficit thinking," "deficit thinker," "colonialism," "post-colonialism," "dysconscious," "dysconscious **dism" (i.e. Deaf Uncle Tom), "subaltern rebel," "linguicism," "intergenerational unification," "discursive system," "subaltern," "subaltern-elite," "elite," "subalternity," "unconscious internalization," "minority imperatives,"  and many more. Enough to dazzle all new comers with such impressive array of words. All those terms reminded me of Scientology speak and how they were mostly successful in using their own words to "de-program" their new subjects to fit their new world "reality." In this case, ironically so, many deaf subjects or new comers were taught these new words and new ideological concepts who actually lacked English-literacy skills and are effectively monolingual in their own  (visual) language which happens to be ASL or sign language.  These "leaders," "higher followers" or "sub-leaders" use the written English language to include those dazzling terms in a format much like you would see in a doctorate paper heavily laden with psychological terms. It sounds impressive to new comers. All those fancy terms. This helps to "legitimize" the whole indoctrination process at "de-programming" centers at specialized workshops with the opportunity to simplify those terms further and its ideological concepts using ASL or sign language.

Bait. Hook. Reel them in.

Those were the obvious red-flags that something was amiss. I was actually targeted by one "elite" follower who used ad hominem attacks against me and others using an organization's website as his personal site to be used against me.  That certainly didn't help the situation exhibiting certain cult-like action and attitudes. That organization tried to cover their tracks by deleting that particular webpage the next day but they failed. There was never a public apology to this day from that particular person for his cyberbullying and wholly unprofessional action.  It was an absolutely surreal moment and at the same time a bit fascinating to have witnessed that personally.

Moving on.

The term "deficit thinking" is a form of "psuedo-science."

"process of false persuasion by scientific pretense"

Indeed.

According to a book on “The Evolution of Deficit Thinking: Educational Thought and Practice” (by Richard R. Valencia, which is an interesting read on the history of how that concept came about) the definition of “deficit thinking” is:

“Deficit thinking is tantamount to the process of ‘blaming the victim’. It is a model founded on imputation, not documentation.”

Imputation essentially means acts of accusation.

Words like “deficit” and the prefix “dys” in "dysconscious" are tinged with negative connotations. The prefix “dys” comes from "dus" (bad) spoken by people of Greece starting about 1000 B.C where "bad" modifies the word. And, of course, deficit means “inadequate” or “insufficient.”

So, you can see why people like to use those particular terms with its built in negative connotations as way to attack and bludgeon others for having a different perspective and opinion.  People have different viewpoints, perspectives, life experiences, failures, and successes whose own reasoning may be just as valid as the next person’s.  It’s easy to call somebody a “deficit thinker” or "dysconscious **dist," for example, but then again that person may exhibit that very same attitude as well.  It's like when a person accuses somebody by pointing a finger at him and in response you get 20 fingers pointing back at the accuser. To me, those terms are meaningless psychobabble and are worthy enough to have them drop kicked over a football field goal when it comes to deafness-related discussions. It simply doesn’t help the situation or the discussion. It invites confusion. We have seen it happen again and again. It never stops.  It's full of generalities when used improperly and solves nothing.

Certain deaf leaders and "sub-leaders" like to use those "cult-like" sounding terms in their initial effort to impress and recruit potential new comers as part of the whole collectivism and "consciousness raising" efforts. That reminds me of spiritual gurus or swami who try and "enlighten" their new starry-eyed students who are desperately looking for answers, the meaning of life. But if you disagree with them or have an opinion different from their "world" views you'd be called loudly as a "deficit thinker," a heretic, an apostate, or something worse.

Those "cult-like" sounding terms or unfamiliar words usually get legitimized further from people who hold doctorate degrees in Deaf Studies or something similar. They are there to teach those (i.e. new or potential recruits) who don't know any better or don't understand the words and ideological concepts at specialized workshops, usually for culturally deaf people only.  And in signed videos which are usually not captioned or supplemented with a transcript which is interesting when they usually scream about oppression, discrimination, lack of accommodation, and such. They play the same sick games of oppression just like their hearing counterparts.  The irony is simply too much.

All in all, it was fascinating to watch this new kind cultish-like behavior take place and how it has evolved over the years. But the warnings are still there. Be careful not to be taken in or dazzled by impressive sounding words and concepts. We all understand that discrimination occurs and do take place everyday. We understand that hearing, deaf and hard of hearing and culturally deaf people need to be educated about hearing loss, deaf education, language acquisition, mode of communication, communication preferences, and the acts of discrimination and intentional prejudice based on hearing loss, ability to speak/listen, and/or even the ability to sign.

Anonymous Matt

Below is my response to "Matt," an unknown commenter, in which we had a lively discussion in a previous blog, "Death of Deafhood?" I decided to put my response here since it would be too long to respond in a comment box that already limits a certain number of words allowed.


Matt: 1.) It was never his journey. It was a research conducted by Paddy (he was an oralist, btw.) in both the states and UK.

Mike: It was a thesis of his, I know. He related his own experiences through his own research on "finding deafhood" and to be used as a "guide" for others to use. In fact, in his Acknowledgement page he said and I quote, "My persnal journey in search of self and Deafhood has been assisted or supported by so many people....."; "Every word of this text and my life has been infused by some special sources largely hidden from view...."'; and "And so the 25-year journey arrives at this plateau." Doing research was his own journey of discovery. He also peppers a lot of his personal experiences such as explaining, "Being orally mainstreamed to a secondary school level of English literacy, I am situated outside this experience. English remains my first language. Twenty-six years of BSL use hsa brought me 'inside' to some degree, but mastering every...."; and "My account is focused mainly on the UK..." Again, I am aware it's a research/thesis of his regarding the understanding of deafness and self, and the journey about it. I have already said that "deafhood" is simply a concept. A philosopical musing of his imbedded in his research based on his own observations...others and his.



Matt: 2.) Yes, the term "Deafhood" wasn't around back then, but the feeling definitely was. Take the class to understand more.

Mike: No thanks. Until people actually walk the walk and include everybody with hearing loss, only then would I reconsider.  Their past actions betray them.  Inclusivity was never in their vocabulary because it would undoubtedly betray their agenda.



Matt: 3.) It's really really obvious right now that you have zero idea of what Deafhood is, and their participants are. The statement of yours - the one that says that Deafhood divides the community - couldn't be any further from the truth. Not saying this to throw a jab, but to make it really clear.

Mike: Matt, before I go further, why the anonymity on using your first name, if that is your real name? Secondly, "deafhood" is simply a concept. I have covered this many times over the years in my blogging since 2006 when "deafhood" first surfaced. Maybe what you may not realize is the self-hypocrisy at work within a community?

I never said "deafhood" divides the community. Rather, it's the people who insist on belonging in a closed society as I have explained numerous times in my blogs over the years. It's the people who insist on political correctness. It's the people who try to move the goal post. It's the people who claimed "deafhood" helped them "understand" yet attack those who have other opinions or disagrees with their assertions or opinions. I have said many times in my blog, it's much easier to simply respect deaf/hh people for who they are and not about what they are. This is much better than politicizing "deafhood" and obsessing so deeply about the inequality of life that each of us has experienced on different levels and scales. I'd say, please, walk the walk first. If you believe it so deeply in the gospel of "deafhood" why the anonymity?



Matt: Right now you're judging it by a glimpse of the book cover. I suggest you take the workshop. I guarantee you that there will be a diverse group of people in that room with you. There were a few of oralists in the class I took. After the class was done, we felt closer to one other.

Mike: No. I have researched this. Discussed with those who did take those workshops. Some were culturally deaf from deaf families. The problem is that in America (rather than the UK) certain groups of people took the concept of "deafhood" and politicized it every which way possible in the name of political correctness for their deaf culture. Some believe there's an agenda afoot.  My view is, as I have said many times in my blogs over the years on "deafhood," that a person's journey is deeply personal and private. Each of our own journey is unique from the time we are born to the time we die. There are some overlaps on our experiences, sure, but we do not travel the same journey as with the next person. Our paths simply intersects at various points in time and see things the same way but it doesn't mean both journeys are the same from beginning to end. Simply put.



Matt: Deafhood is basically about the fact every Deaf person shares one thing in common - deafness. You cannot deny that.

Mike: I never denied that. Please show me where I have said that. I challenge you to find somewhere in my 2000+ plus blog entries that I denied that we do not share a common trait and that is hearing loss (as opposed to your "Deaf").  Use my blog's search feature to find what you are claiming. Good luck.

The problem here is when people try and politicize "deafhood" to fit their own agenda. Which is why "Deafhood? No thanks" FB came about. It's better to simply respect people for who they are rather than on what they are (i.e. Deaf/deaf/hard of hearing). The focus should not be about our disabilities (i.e. our deafness) but as a human being who go through our own unique journey. Seriously, Matt, I have covered this many times since 2006. If you like "deafhood" and it makes you feel happy and secure then knock yourself out. As for me, no thanks.



Matt: Deafhood Foundation has made it clear that they're still in their formative stages and is willing to hear suggestions on how to make things better. Your question is valid, the one with why there is no interpreter provided. Butch Zein, the instructor, actually mentioned that in our class and they're working on it - thought you'd like to know that tidbit.

Mike: Certainly, they're in their formative stages. I have provided a challenge in my blogs several times for them and that is to walk the walk regarding inclusivity of anyone who has a hearing loss and whether they know ASL or not, or are AGBell members, HLAA members, strict oralists, SEE users, CUERs, and so forth to discuss this "deafhood journey" of yours. And ensure that they receive the same communication access as the next person who may or may not know sign language. They have not done that nor will they do it whole scale because they have deeply politicized the whole deaf culture thing intermingling with cochlear implant issues, language development, educational settings, oral trainings, audiologists, the medical field and terminologies, and so on. In short, they made themselves completely incompatible with the rest of the 98% of the hearing loss population (36 million people with hearing loss). Or from your viewpoint you could say that the 98% made themselves completely incompatible with the 2% of the people who are culturally deaf. It'd be a farce to fully expect they all will embrace your new goal moving post the new term "Deaf" to mean them, too. It'd be just as horrifying for you if they expect you will accept the word "hearing impaired." Sorry. It simply will not work as long as people continue to politicize the whole concept of deaf culture to fit their own agenda, whatever they may be.



Matt: And re: my usage of Deaf for everyone. You have mentioned in the past that you love the English language. The beauty of languages: they have the ability to evolve over time. Words change meanings. You may be right, Deaf has it's own meanings. I've made my definition clear - and I hope it changes the definition for everyone. I do not want people to feel that they're a lesser Deaf person by putting the d label on them. If they want to label theirselves as deaf, that's fine with me. It's not my job to decide for them.

Mike: Consider that not all of the 98% of the hearing loss population (36 million) will accept the new word "Deaf" to mean them, too. Especially when it's already been defined to mean culturally deaf people only.  It simply won't work expecting the masses will agree to the new term. This is all about serving their own agenda regarding their deaf culture, ASL, deaf education, and language development. We saw that hideous development during the AB2072 debacle. That's "deafhood" for you instead of considering a more open society concept.



Matt: This will be my last response re this topic. I really hope you take the opportunity to take the class one day. I guarantee you will take something with you from the class.

Mike: I have no interest because they have shown not to "walk the walk" and prefer to keep to their own status quo.  Like I said, if you like using the feel good "deafhood" term and feel secure about it, then by no means do not stop on account of me. Go ahead and spread your "gospel."  But remember, Pres. Hurtwitz re-iterated the 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.  "Deafhood" is an ideological concept born of a culturally deaf person specifically and targeted to mostly a limited culturally deaf audience. So, therein lies the conundrum.

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.

Deaf Gain? Blind Gain? One-Hand Gain?

There's a new term being used and that's "Deaf Gain." Jannelle Legg and Sophie Sok at Gallaudet University explained in an article about the term.

The term “Deaf-gain” was coined in 2005 by a British performing artist visiting Gallaudet. Deafened later in life, Aaron Williamson noted that with each interaction doctors repeated that familiar refrain “hearing loss.” This experience, familiar to most deaf people, compelled him to posit the question, why “hearing loss and not gaining deafness?” That question is an important one because it calls attention to a fundamental issue in Deaf studies. The culturally Deaf experience is not, as many believe, a dramatic loss of hearing. Instead, deafness grants an entrée into a language, a culture and a way of life that is not only unique, it is valuable.

I have no compunction in pointing this out in my blog about the term, which is fine and dandy if people feel the need to use this alternative but positive term, however, a person is still a person and he or she is just as important as the next one.

But let me put this into context about "Deaf Gain."

What about terms like "Blind Gain" as something that's (supposedly) positive for those experiencing vision loss or complete blindness? Or what about "Deaf-Blind Gain"? Or "One Hand Gain" for those who lost the functional use of their hand or through amputation?

I understand how some deaf people are trying to put a positive spin on their deafness and access to deaf culture but the medical fact cannot be escaped or hidden away. A person may have a condition either involving hearing loss, vision loss or a missing or malfunctioning extremity such as a missing hand or whatever else that's "missing" or not "functioning" properly. A person is still a person no matter what. Best to make life as positive as possible with what you have rather than not what you do not have. That's what makes a person whole.

However, there are those who have a condition or senses that are somewhat "functional" such as those with, for example, mild, moderate or severe hearing loss who use a hearing aid. Though not at the level of a hearing person but it's the next best thing to have. Same for those with varying amount of vision loss requiring thicker or stronger lenses to see better for those with 20/40, 20/50 or 20/60 vision, for example. A semi-functional hand though weakened in it's functionality. Or a person with limited hearing loss and vision loss but is able to use those senses with limited success with various aids or devices used.

Even with limited functionality, a person can still feel whole as long as he or she is treated with respect as a human being for who he or she is.

Let's take myself as an example. I have a moderate-severe hearing loss in my right ear while my left is no good with profound hearing loss. I'm not afraid to use the term "hearing loss" because that is what it is. A hearing loss. A medical fact. But with my right ear I use a hearing aid that can boost what hearing I have left. My hearing aid has allowed me to successfully use what limited sound I can get out of it to the point of using the phone with anyone, field radios, talking with strangers in the street, help modulate my voice, and so on with success. In fact, I'm thankful for the limited hearing that I have. Just as I'm thankful that I can still see even though I need to wear my reading glasses. As for my hearing aid, it gave me "Hearing Gain." Would that be a term I'd use? No. It wouldn't make sense. But that hearing aid has allowed me to access to the hearing world the culture of sound. Without it I would have never taken up piano at age 7 where I'm now a Ragtime pianist.

It's all about preference when it comes to describing how one positively sees him or herself as. Again, not about putting down "Deaf Gain" but I am questioning about the use of that same term for other loss of senses and re-frame it into a context of a person who, for example, lost her sight completely, would that be a "Blind Gain"? Or a person who lost an arm? "One Arm Gain"? Or lost the use of her legs unable to walk for the rest of her life? "No Legs Gain"?  Or a stroke affecting the mental capacity of a person, would that be "Mentally-challenged Gain"? It would just sound totally creepy if not pitiful.

The point is people would find it odd to think that losing one of your senses later in life would constitute as a "gain." I understand the whole point behind "Deaf Gain" but it's not a term that every person with a hearing loss would use.

Deafened mice hear again

A drug that can regenerate damaged ear hair cells in mice.

Now, Edge and his colleagues have tested several gamma-secretase inhibitors to find the one with the strongest regenerative effect on inner ear stem cells. They then tested that drug on adult mice that had been deafened after 2 hours in an extremely loud sound chamber. The drug prompted supporting cells in the inner ear to become hair cells, and the treated mice regained some hearing, the group reports online today in Neuron. 

The gamma-secretase inhibitors were originally developed as a potential treatment for Alzheimer's disease, but clinical trials showed little effect on symptoms of dementia and serious side effects in the gut and the immune system. Giving the mice one of the drugs orally triggered similar side effects, the team reports, so they tried applying the compound directly to the membrane between the middle ear and the inner ear. That required minor surgery in the mice, but could be achieved with an injection in humans—a technique already in common use, Edge says. The direct application produced as much hair cell growth as the oral treatment, without significant side effects, the team reports. The drug isn't ready for clinical trials, Edge says, but "it's a foot in the door."

"This is a major step forward," says Yehoash Raphael, an auditory neuroscientist at the University of Michigan, Ann Arbor, who led the gene therapy study in guinea pigs. Although the treatment didn't restore full hearing, the improvement is significant, he says.

This is indeed a major step forward in regenerative medicine for the treatment of sensorineural hearing loss. It'd be a matter of time until clinical trials begin.

National Geographic Founder and Deaf Daughter

From National Geographic piece called So That We May All Know More of the World Upon Which We Live covers a piece about Gardiner Greene Hubbard, one of the 33 founders of the National Geographic Society, about his deaf daughter, Mabel, who grew up and married Alexander Graham Bell.

The thirty-three founders of the National Geographic Society were an adventurous and accomplished group. They included scientists, explorers, a journalist and a superintendent of the National Zoo. In recognition of the National Geographic Society’s upcoming 125th anniversary this series takes a look at their stories.

Hubbard’s progressive ideas encompassed education, and when confronted with the challenge of a deaf daughter, he did not shirk from the challenge. Young Mabel lost her hearing at age five after a bout of scarlet fever, and many children like her would have sidelined for the rest of their lives, kept out of society if not actually put in an asylum. However, Mabel received the best of educations, and when she was a teenager, a friend introduced her to a new teacher of the deaf in Boston. Alexander Graham Bell immediately took Miss Hubbard on as a pupil. Bell was a gifted teacher and Mabel thrived even though they had only a few lessons before Bell transferred her to the care of a colleague. For he was falling in love with Mabel. His explanation to her mother, Gertrude Hubbard, was somewhat evasive, but one suspects she grasped the situation immediately. She was sympathetic to the somewhat shabby professor, making sure he was a frequent guest at the house. One night, while seated at the piano, Bell turned to Mabel’s father and said, “Mr. Hubbard, sir, do you know that if I depress the forte pedal and sing ‘do’ into the piano, the proper note will answer me?” His performance produced an instant partnership that would change the world.

Read more at National Geographic. 

Read more about Alexander Graham Bell's wife, Mabel, who is the daughter of Hubbard seen in the article above, in a previous blog I did called The Adventurous Life and Love Story of Mable.

National Geographic covered many stories about deaf people such one article written earlier this year on how cell phones through texting enabled and empowered deaf children in Uganda to communicate with other people. Or even about the Bhutanese School for the Deaf.  Or an article on why deaf people have enhanced vision.

If you use the search feature of National Geographic and plug in the search word "deaf" you will find 24 pages (235 results) of links to pieces or articles on deafness issues, hearing loss, deaf animals, or deaf people. There are also 3 pages of search results for "hearing impaired," too, like a search result with a link to on which president inaugurations had its first closed-captioned TV broadcast for the hearing impaired.

Check it out.

A cure is worth it....or not?

The now famous news of gerbils whose own deafness were nearly restored using stem cells to treat their hearing loss will probably be the turning point in medical history on the path to restore hearing loss for the human population. It'll be a matter of time until we are able to reverse hearing loss in humans using stem cells. This would bode good news amoung the many 35 million people with hearing loss in the United States. Not to mention a highly lucrative field once it gets going. I would say that 98% of the population with hearing loss would more than likely accept this news as positive and that many would accept this medical procedure for themselves instead of opting for hearing aids or cochlear implants.  The remaining population (2% of the total population of people with hearing loss) consisting of some 600,000 or so culturally deaf people would either accept this news positively, negatively or remain on the fence about it. 

Now, being culturally deaf does not mean all of them would be against this medical choice on choosing to restore hearing loss should a medical procedure actually becomes available.

Being culturally deaf also does not mean a person has to be born with a hearing loss first and learn to sign early on. Many late deafened people are culturally deaf.

Being culturally deaf does not mean a person must not wear hearing aids or cochlear implants. Or that he or she must go "au naturel" instead of relying on hearing aids or cochlear implants. Many culturally deaf people wear hearing aids or cochlear implants.

I would say that those culturally deaf people who wear hearing aids or cochlear implants would be more than likely support for the restoration of hearing loss in people using stem cells than not should it becomes available and a reality. And that it becomes a medical choice and not a law.

Would I take it?

Sure.

It'd be for my right ear only since that is the only ear that can hear well and it wouldn't take much for my ear adjust to the new clarity of sound in its natural splendor without my hearing aid for the first time in my life. As for my left ear I don't wear a hearing aid since I do not derive any real benefit due to the severe/profound hearing loss I have. Although the possibility does exist that I could "train" my left ear for years with a hearing aid and then opt for the procedure. Who knows?  I'll just bide my time and if this medical procedure does happen during my lifetime then I'll have the opportunity to make an important decision.

I'd say it's worth it for myself to see that my hearing loss in my right ear be restored and be fully functional. Others will have a different opinion about it and many would personally be against it. So, for those who are shaking their heads, if there's a cure for blindness, then please do not opt for it for yourself or for your baby if you have a serious vision problem. After all, you wouldn't want to look like a hypocrite for being against on the restoration of hearing but accept the restoration of sight?  Can't have one's cake and eat it, too.

Naturally so...

A certain person who used to be a moderator in one forum recently claimed that I made a slanderous remark against a new forum in a recent blog I did. A claim that is certainly unfounded. The problem is that I've always supported competition as I've said before elsewhere. If people think they can build a better mouse trap (i.e.better product, services, etc), go for it. This is exactly how it happened between Deafread and Deaf Village. Both are blog aggregator websites where Deaf Village was borne out of its own need (and frustration) on a matter of principle and ideology in 2008 to build it's own blog aggregator site instead of relying on Deafread's blog aggregator site. In fact, I was one original Deaf Village staff who helped get Deaf Village off the ground in 2008. And yet I am a blog contributor to both Deafread and Deaf Village blog aggregator sites.

The same story goes between DeafvideoTV, Deafcube and ASLrocks.net (now defunct) which are (or were as for ASLrocks) video blog aggregator websites but Deafcube (and ASLrocks) was, too, born out of its own need (and frustration) on a matter of principle and ideology recently to build it's own video blog aggregator site. So, nothing is new under the sun when Naturally Deaf came about a few weeks ago borne out of its own need (and frustration) and as a matter of principle and ideology against All Deaf to build it's own forum.

People are free to make their choices when it comes to competition over the internet and that's what makes America great. There are now more choices to chose from for deaf and hard of hearing people, late deafened, culturally deaf, cochlear implant wearers, CODA, hearing parents of deaf/hh children and people who are simply curious or interested about deafness issues. I've already told a few people about the new forum site to check it out yet the snarkiness and sniggering on congratulating me for helping generate traffic to their new forum continues as I speak which certainly tells the story. 

As I have said before to the new moderator, good luck on the new endeavor and duty as a moderator. I mean it.

Now, back to my blog.

It's understandable that some people would miss my warning that I'd play the devil's advocate (I made it abundantly clear in the beginning) in one of my recent blog.  Long story short, I explained that some people might think of the phrase "naturally deaf" as applied to people would find it odd. Much the same questioning could be said for "naturally blind" and so on. But if people actually think I did make a slanderous statement against the new forum in my recent blog then show exactly where I made that slander. Otherwise it'd be smart to retract that accusation when it was never true in the first place which, ironically so, is the very definition of a slander. Go figure. Yet, I have my own opinions and beliefs regarding forums, blog and vlog aggregator sites. I have the right to express them as I see fit. Even when I believe some favoritism and bias have played a role on influencing moderators. There is no such thing as a bias-free moderator, naturally so. And in retrospect, I'd be wary of joining a deaf discussion forum with that kind of rampant bias and favoritism.

Forgetting your deafness while not forgetting that you're deaf.

Lately there seems to be a bit of twisting of a particular quote on what Naomi Horton of Indiana Hear said not too long ago in a recent Indiana Hear press release last year in June:

When deaf kids don’t consider themselves deaf… the magic begins.

The context of her quote is quite simple once your read the rest of the press release. It's from a point of view that when kids are having fun and are communicating with each other, they forget that they are deaf. Hence, the "magic begins." That press release provides a much better context in support of her quote.  In fact, in the press release it stated that the kids when asked a question about camp they don't talk about their deafness:

....queried the children about what makes this camp special. A sample of the answers were: “swimming in the lake,” “horseback riding,” and “the friends we make.” None of campers surveyed even mentioned being deaf.

That's the gist of it. They have fun at camp forgetting completely about being deaf. The kids know they have a hearing loss or are deaf and certainly are not ignoring that very fact themselves. 

Tyler McAchren, a Junior at Huntington University, was a chaperone this summer after attending as a camper for three years. McAchren who wears a cochlear implant was asked, “Do you consider yourself deaf?”

“I usually say I’m hearing, but I’m not opposed to using the word deaf either. After all without my implant I am profoundly deaf.”

Hear Indiana’s executive director, Naomi Horton, queried the children about what makes this camp special. A sample of the answers were: “swimming in the lake,” “horseback riding,” and “the friends we make.” None of campers surveyed even mentioned being deaf.

Naomi Horton spoke about the summer camp for deaf and hard of hearing kids with the goal to help build up their confidence and self esteem. Nothing more, nothing less. 

“Camp reminds us all that deafness is no longer a limitation. Our campers amaze me with the gentle way they encourage each other to complete our challenge tasks. Our camp is fostering future leaders, not just within the hard of hearing and deaf community, but within the hearing world at large.”

The kids at summer camp communicate amongst themselves forgetting that they are deaf just like any other deaf kids who communicate whether by speaking, listening or signing.  It is a common thing to forget about our deafness in our effortless moments whenever we communicate with other people but certainly have not forgotten that we have a hearing loss. It'd be ludicrous and delusional to think otherwise.

Naturally Deaf?

Recently a phrase "naturally deaf" was brought up where it raised all kinds of questions concerning the expression behind it for deaf people who may use it as sign for "Deaf pride." I get it so don't get me wrong. It's about "acceptance" of oneself, acknowledgement of their deafness, yada yada yada.

Got it.

Yet, the culturally deaf crowd represents barely 2% of the 36 million people with hearing loss in the United States. It's all about personal choice to describe oneself.

But allow me to play the devil's advocate for a moment.

This phrase would make as much sense as saying "naturally blind" or "naturally mute," or, to play the outside of the rules of today's politically correct games, even "naturally mentally retarded" to many people. Their line of thinking would be to ask what's natural about it for those who cannot walk and must use wheelchairs, for example? Exactly what's "naturally" about it some might ask?

In the United States about 2 - 3 infants out of every 1,000 live births will have some degree of hearing loss at birth according to NIH.   About 50% of the babies born are due to genetic factors where some 400 different genes are the root causes of deafness through a variety of genetic mutation. About 15% of those babies born have other conditions that accompanies their deafness or syndromatic (i.e. "multiple disabilities" such as deafness and cerebral palsy) while 25% of them are born only with a hearing loss as a result of a genetic change (non-syndromatic). 

About 25% of cases of deafness are caused by non-genetic factors such as premature birth and illnesses while pregnant like Rubella (German measles), Cytomegalovirus infections, Toxoplasmosis, Herpes infection, and Syphilis. 

And then you have non-genetic causes of deafness after birth such as head injuries, childhood infections (such as meningitis, measles or chickenpox), certain medications (such as the antibiotic streptomycin and related drugs), and even ear infections (otitis media) in rare cases causing permanent hearing loss. 

And the rest of the remaining 25% of the cases of deafness in infants and children are unknown causes.

I might be belaboring this but I see using the phrase "naturally deaf" as an attempt to define oneself in a feel good way sort of thing. And that's fine. Others may choose a different way to express oneself. Not everybody see hearing loss in the same way as the next person. Of course, you don't hardly hear people with a blindness or a vision condition say "naturally blind" and have a forum with that name, too. I'd be just as wary joining a deaf forum under a similar moniker.

Naturally.

UPDATE: In an OCDAC blog I noticed with bemusement of how a few people got it wrong about this blog piece. This piece is about the phrase "naturally deaf" which, to me, appears to be much out of sync aligning with the same idea of people born with mental retardation to be called as "naturally mentally retarded." It just doesn't make sense. I do not need to refer to a website about that phrase and why should I? So, instead these people go about the conspiracy talk.

Lotus got it wrong, eh Weyn?

So did Jill, a serial online bully done via snarkyism and derision at a known deaf-run discussion forum who finally got the perma ban. A hearing woman who was the most addicted forum member who paraded as the savior for deaf people everywhere took the time to go online nearly on a daily basis for hours and went after other forum members who do not agree with her or have opinions she doesn't like. Instead of putting a member on ignore she chose to harass certain members. A woman who, ironically and hypocritically, has a M.Ed in Counseling and a BS in psychology. A woman who was the most addicted member to a particular online discussion forum who posted relentlessly, yet consider the degrees under her belt, her addiction and bullying attitude. It's somebody you don't want to get professional advice from her.  And because of her constant online bullying, I had no choice but to put her on ignore. She continued to berate, "snarkyed," and derided me where others responded to her comments hoping that I would get see her comments. Even those people were eventually put on ignore after I recognized their tactics in getting me to try and respond to "Jill." Her constant bullying soon earned her a permaban after she and others have tried to get me permanently banned for years. I never received a permaban over there or anywhere else. In fact, that one forum was the only forum I constantly attended for several years.

Lastly, there were only two comments I didn't approve. That was because they broke the posting rules. It was not even "numerous comments" that I didn't approve but two. A former moderator and a different person.

Walk4Hearing reaches pivotal fund raising goal

It took 10 months starting in January of this year the Walk4Hearing to finally reach their fund raising goal of $1.2 million dollars in record time. Money raised will be used toward resources for deaf and hard of hearing people. And why so quickly did it raise so much money in such a relatively short time? Simple. There was no politics mucking things up. No political correctness games. No secret agenda. No contacting employers because of disagreements or purely for hate against a person they don't like. No calling Child Protective Services. No practicing on exclusion.  No leading from behind. No leaving bad taste in people's mouths. No attacking other organizations. With HLAA, everybody is involved and we/they help each other out regardless of communication preferences.

Money raised is shared between the national organization (Hearing Loss Association of America) and local Walk sites.

Examples of how funds are used include:

National Programs

• Advocating for the rights of people with hearing loss
• Information, referral, education and coping resources through www.hearingloss.org, the Hearing Loss Magazine, the annual HLAA Convention, and the HLAA electronic newsletter
• A nationwide network of 200 chapters providing personal support
• 14 state organizations advocating for expanded state services
• 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

• Captioning and hearing assistive technology at chapter meetings to make them accessible
• Scholarships for students with hearing loss towards college tuition
• Funding for hearing aids and devices for people who cannot afford them
• Installation of hearing assistive technology in public places
• Captioning of live theater productions
• Seminars on coping with hearing loss for families

Congratulations to Walk4Hearing on their successful fund raising effort. I'm sure money will be put to good use.

Capitalizing on what works

There's this fixation over the word "fix" when it comes to certain people with hearing loss, especially of those with greater hearing loss.  The word "fix" doesn't necessarily mean a permanent solution but rather a way to utilize a solution that best improve a condition. It's more of a correction and supplement to an existing condition rather than a "fix" per se but I understand exactly where people are coming from when they say that. Just as glasses helps fix poor eyesight or people with a variety of vision loss. You take off your glasses, you still can't see well. You take off your hearing aid or cochlear implant you cannot hear very well or none at all. It's utilizing what senses you have left by capitalizing the power of technology. Each of us has a hearing loss that is different ranging from mild to profound, bilateral or unilateral hearing loss. It's a fix, it's a correction but there is nothing permanent about it when comes to those adjustments being made. The question becomes whether people with hearing loss will capitalize on that or not. Some do. Some don't. Some won't. What works for me, works for me and has nothing to do with you. All we can do is respect the diversity out there. Not everybody signs. Not everybody can hear like the next person. We're all different. It doesn't matter if a person prefers to speak and listen, and don't know sign language, what matters is that we understand that diversity exists and we must respect that and the communication and language options for all those deaf and hard of hearing people out there. What works for me doesn't mean it will work for other people with hearing loss, deaf or hard of hearing with bilateral or unilateral hearing loss. What works for you doesn't mean it'll work for other people as well. I simply capitalize on what works for me.

Fixed

Fixed...a captioned video on disability and super-ability.

Making Music with a Hearing Loss: Strategies and Stories

That book is now available in Amazon. I'll be getting a free copy of it since I'm one of the several deaf/hh musicians who were interviewed for that book. My narrative can be found in the final chapter of that book.

There are many texts on music and hearing loss, but what makes this volume unique is that it does not require the reader to have any previous background in hearing science. It is written in non-technical language for the layman, and begins by explaining how the human ear hears sound. It covers the interplay between music, speech and hearing devices and discusses hearing conservation for musicians. The final chapter contains inspiring narratives from eleven deaf or hard of hearing musicians belonging to the Association of Adult Musicians with Hearing Loss. These eleven stories describe using a variety of strategies to integrate hearing loss and music making. Musicians new to hearing loss, hearing-impaired adults wanting to learn a musical instrument, audiologists, music educators, and music researchers will also find this book a valuable addition to their library collection.

I'll be waiting with great anticipation for my free copy. If you are deaf or hard of hearing and enjoy music, this will be a great book to have. If you have a hearing loss and is considering on wanting to play a musical instrument, don't let your hearing loss stop you. And if you do play a musical instrument....don't stop! Keep practicing and find other like minded people who enjoy playing music with their musical instruments.

Keeping it simple

I like to keep things simple in life and try to look for the more positive things. For me, I refuse to use my disability or my hearing loss as a crutch or an excuse in life. There are ways to educate people that's simple when it comes to communication access. People continue to learn new things when it comes to those with hearing loss. Many people I work or associate with have mild hearing loss and some do wear hearing aids. Few I know have moderate hearing loss. Sometimes in one ear or both. One is a young adult who has a hearing loss but only in the high frequency range but hears just fine but no hearing aids. And of course those who have much severe hearing loss and know signs.

Nothing is worse than to have people look down on you with pity especially if the person plays the game using deafness as his/her crutch. I refuse to see myself as a victim or behave like a victim all the time. Playing the victim card at every waking moment isn't a healthy life while accusing and blaming people all the time.

Accentuate on the positive. Keep it simple by keeping the path clear.