June 27, 2010

'Fixing' Deafness: What's Next?

It is interesting to me when people talk about 'fixing' deafness or deaf people, whether it is through hearing aids, cochlear implants, and/or auditory/oral training, and then say, "What's next? Will we 'fix' gay children or make dark skinned children have lighter skin and blue eyes through genetic modification?" Here is a similar statement, an excerpt from the transcript provided by Holism (thank you), spoken by Romero:

Then I would have to ask, how far are we willing to go? Are we going to fix gay children? Are we going to fix dark skinned infants, and give brochures to parents saying, this is how you can bleach skin? Are we going to fix the curl of the hair? I mean, I must honestly ask this question, because I think these are some of the concerns, and I’m not saying it’s intended in this bill. 

I do not think it is appropriate to compare deafness to gay people or people with dark skin. By most people, deafness is seen as a medical issue, not cultural.  The general population largely view deafness as a medical problem and will always view it as so. As a whole, they will never accept deaf people as a cultural group. It is something that is totally beyond their comprehension. The idea of 'fixing' deaf children or making them more 'hearing' will always be more appealing to hearing parents. Language is something most people will not think about. I can understand the deaf community's concerns about how parents are constantly misinformed or left in the dark about the importance of language and using sign language. This is what the bill is supposed to be about and it sounds as if they are listening to the deaf community and making some of the amendments that are necessary. The bill may not be perfect, but it is better than nothing. It is a start.

I believe that using the cultural model or comparing deafness to sexual preferences or skin color is not necessary, because not many people will understand this concept. Instead, focus more on providing plenty of positive and interesting messages about sign language. Look at what happened with the 'baby sign language' movement, targeting hearing babies, strangely enough. The positive claims that sign language will make babies smarter and ease their frustrations works well.

Why not make your own brochures about the benefits of ASL and pass them out to various offices and schools (if they will take them)? Create it, promote it, and market the heck out of it (without shoving your ideologies down other peoples' throats especially when they don't ask for it). It is time for those who think there is too much emphasis on 'fixing' to focus on the more positive ways of educating others about this issue.

Regardless of how anyone feels or what is available out there, parents are going to do what they please with their children. They make the choices. Most hearing parents will try to 'fix' their children even if they are provided ample information about sign language. Please respect their choices. Don't complain about or insult those who make choices different from what you would have done.

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29 comments:

  1. Deafness can be addressed as it as disability not usually a genetic inevitability. Just because a sector of deaf people do not accept it is a disability doesn't change anything. If they weren't meant to hear, then they would not have ears.... There is no point allying gay issues with disabled ones, they are two different things... according to the gays it is a chromosome thing not a disability. However THAT may become an issue that will be 'addressed' too. Who knows that genetic advances may offer ? or if parents will take the options ? Gay/straight child ? who knows how parents will go ?
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  2. You are welcome. The real credit belongs to the person who was willing to sit for over twenty hours in two days and make this possible. This individual went over every statement three to four times to make sure that the work is as accurate as possible, leaving no room for error.

    I also did not think it was appropriate to compare deafness to gay people or people with dark skin. It just did not make any sense to me.

    Like you pointed out, most people see deafness as a medical issue and this much is evident when you look up scholar based dictionaries. It's up there as the first definition. That is based on 'usages'. Understand USAGE and you'll understand why the general population are always going to view deafness as a medical issue, as you pointed out.

    And you said it. The general population as whole will never replace medically deaf with culturally deaf.

    These very people that opposed AB 2072 simply do not grasp the reality here.

    And yes! The idea of helping the deaf children is not a form of fixing. These extremists are trying to replace 'helping' with 'fixing' to make it sound worse than it really is. Shameful.

    I totally agree with numerous suggestions that were made in the past, encouraging our deaf communities and leaders to shift their focus on marketing ASL. I mean, what's stopping them from advertising ASL as an ideal language and solution? Didn't they understand my earlier v/blog when I explained how I saw AB 2072 as an opportunity for us to paint a beautiful picture on ASL. I was bashed for making such suggestion.

    And now, in this modified AB 2072 bill it's now "hands off' bill where no agencies are given access to 'free advertisement'. This in itself is a HUGE loss. In short, those who opposed the bill, initially, did not know a good thing when they had it. They had to complain themselves to death only to learn at the very end that they did not have any chance of killing the bill. Not only did they fail in killing the bill... they lost access to free advertisement, one of the most coveted and desire tool in the marketing world!

    This blog is well written.
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  3. I have a four-generation deaf family; I was taught to never allow other people define me as they currently are defining “deafness” as a medical issue. We cannot have a decent discussion in the blogosphere about this important question you asked in your blog.

    Suffice it to say, they once said the same thing about all of the minority groups in our American population. Black people once couldn’t vote because white people simply decided they couldn’t for a variety of reasons. Before Black people, it was women who couldn’t vote. It was because the men decided they couldn’t vote.

    Since you are able to articulate the issues, don’t you think we should let the “majority hearing” people know that we are perfectly capable of taking care of ourselves? It’s because there are many deaf people who do agree with the hearing people – professionals who work with deaf children and people -- that “deafness is a medical consideration.” We say, “deaf people need language.” You are right, they have THEIR perceptions, and I think their perceptions need adjustment.

    Deaf people are very resourceful about accommodating themselves in the majority hearing world. Goodness, my mother taught me how to communicate with hearing people without any hitch. My grandmother had many hearing friends.

    You wrote, “…Instead, focus more on providing plenty of positive and interesting messages about sign language. Look at what happened with the 'baby sign language' movement, targeting hearing babies, strangely enough. The positive claims that sign language will make babies smarter and ease their frustrations works well…”

    I agree, this approach SHOULD HAVE worked. Do you think it has changed many perceptions? I think not.

    We should be asking, “Why doesn’t this approach work?” I suggest you take a Deaf History or Deaf Culture class; it could be an eye-opening experience for many of us.

    Edwin Black in his book, War Against the Weak, wrote:

    “…I ask how did this happen in a progressive society? After reviewing thousands upon thousands of pages of documentation, and pondering the question day and night for two years, I realize it comes down to just one word. It was more than the self-validation and self-certification of the elite, more than just power and influence joining forces with prejudice. It was the corrupter of us all: it was arrogance.”

    Looking back on some of the “hearing professionals,” I am inclined to agree that “arrogant people” are our greater issue, not their ignorance.
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  4. It never cease to amaze me that some Deaf people believe they can put words in hearing psople's mouths with such fiction. Unfortunately, it came from their conditioning at the hands er mouths of their audiologists, speech therapists, brainwashed parents, doctors who know naught about Deaf people, etc. It also amazes me that totalling those people, they make up of such a very small part of the population et they have such huge influence in conditioning your thinking. They have won over you.

    It would be much wiser to reach out to the People of the Eye and ensure their fair seating at the table of Life so that hearing parents who have Deaf children will learn directly from them instead of the disinformation provided by the special interest professionals whonare not Deaf themselves.

    Just be aware it's not wise to ASSUME what the world's hearing folks are thinking. Simple lobbying with the Senators made them quickly be aware of the real us and became allies for the GOOD of Deaf babies and their parents. Your thinking does not help anybody except the pockets of the audist professionals.

    Also don't rely on the Grand BSs transcript. He has a long history of twisting things and call them facts and twisting hhe facts and call them myths. He has noncredility except beautiful smoke and mirrors. I hope u are not the same.
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  5. EXCELLENT observation, Marla! Yes, the Baby Sign thing SHOULD have changed perceptions on Deaf people and ASL, yet it seems like it's barely made any dent. Why? Because the people in control of Deaf ed and passing on the information to the Hearing parents have already had their minds SET IN STONE, and they will not change, so the parents usually don't get the information about ASL, or at least not unbiased information.

    Arrogance, indeed!
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  6. I am a hearing parent and I didn't get any information about ASL or the Deaf School in my state through her audiologist or her early educators (intervention providers). I got info on sign language but it turned out to be SEE which I learned later is not language by a created system of English word ordered signs. I had to find out about it myself. I got plenty of info about how to "fix" my daughter through hearing aids and speech.

    What I found is that my daughter didn't need to be fixed. Our adult "mindsets" needed the most "fixing". Opening our minds through becoming educated about Deaf culture, ASL, and community changed our lives for the better.

    We CAN change people's mindsets through public awareness. Just think how many politicians minds have been opened up by meeting and getting to know the issues of AB2072 through the Deaf professionals who have been lobbying against this bill. It has been a great awakening for them in the most positive sense.

    Think how far we have come by public awareness. No longer do I have to worry that my daughter will be sterilized because she is Deaf. This change occurred because of public awareness.

    I say BRAVO to the Deaf community all across the world who stand up against those who get a high off of pulling the Deaf community down.
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  7. theHolism says:
    > The real credit belongs to the person
    > who was willing to sit for over twenty
    > hours in two days and make this possible.
    > This individual went over every statement
    > three to four times to make sure that the work is as accurate as possible,
    > leaving no room for error.

    Yes, let's give credit where it is due... Thanks to Barry's daughter, KODA Deja Sewell for her 20 hours of hard work transcribing the video for her father!
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  8. If you were gay or lesbian 50 years ago, medical professionals and society believed that you had a psychological disorder which required intensive therapy. Even today, society perceives gays and lesbians as a social problem. However, it's changing here in California-- just look at AB 2199(Lowenthal) which changes a mental health law to discontinue research into the causes and cures of homosexuality. People are more tolerant and accepting of gays and lesbians. Society does change over time.

    As long as society views deaf people as a problem that needs to be fixed, then there will be prejudice and hate, whether intentional or not. There will be a slippery slope which would lead to eugenics. Right now, at Stanford University there are researchers who are working on finding a cure for deaf people. When one is found, it will not cure all deaf people. It may cure only a small handful because of the hundreds if not thousands of genetic and environmental causes of becoming deaf. Even a cure for some other disease could cause a person to become deaf because of ototoxins in the pills.

    The slippery slope to eugenics could lead to prenatal screening of embryos which have a high probability of creating a deaf infant. This is already happening right now in UK.

    Perhaps DNA testing of fetuses for "birth defects" will lead to over 90% of deaf babies being aborted before they're even born. This is already happening right now with over 90% of fetuses identified with Down's Syndrome being aborted.

    I think people need to look at the big picture. Do we really want to continue down the slippery slope to eugenics? Do we really want society to continue to perceive deaf people as needing to be fixed? Or do we want society to be more tolerant and accepting of deaf people who use American Sign Language?

    Will future generations look back at the history we're now making and say that society was right for wanting to fix deaf people?
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  9. Ella, just so that you'll know... You'll be quoted from this thread when the original transcript comes out. You're going to eat your own words. You'll find this transcript to be very accurate.

    Better yet, I challenge you to find somebody to verify the transcript with the official video. You're in it for a huge surprise.

    And lastly I found it rather interesting because it means you either 1) did not remember what was said in the hearing. Or 2) your "result" vlog was misleading. Or 3) You did not want to hear the hard truth. Should be interesting to see which is the case here.
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  10. This bill isn't about "fixing people" but information about ALL communication options that are avaiable. Senator Romero's comment was a red herring in the attempt to try and make other senators feel guilty. She was obviously talking about CI. This bill provides a way to present all information equally and without bias to parents of newborns or children diagnosed with a hearing loss. It's them who ultimately decide. It's not about fixing but improving.
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  11. Linda,

    In my earlier blog you complained about the dangers of assuming about something that were not accurate.

    And yet in this thread you assumed that the transcript was the work of my daughter. Simply shameful.

    Unfortunately it's probably a mere reflection of how small your world is, without connections and network.

    Seeing the lack for it on your part helps me appreciate my connections and network.

    Cheers.
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  12. There is an ongoing movement that continues to change what most people take the medical model for granted and the powers that be that tends to abuse it. The tide is turning. There is more inclusion of cultural studies in colleges and universities. I took a cultural competence study taught by a woman so I learned that the humanistic thing to do is to respect others who are either different or similar to you in some ways. There often lies deeper issues and history that many do not know about rather than resorting to assumptions or ignorance due to bias. The consensus is usually misinformed and misled in thinking of certain groups in the general population and we're still correcting that over time through advocacy, education, and legislation.
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  13. Market your ASL to Hearing parent for deaf baby's sake.

    MARKET YOUR ASL....
    MARKET YOUR ASL.....
    MARKET YOUR ASL......
    MARKET YOUR ASL.......

    :)
    Jen
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  14. I've listened to the video in its entirety alongisde with Barry's transcript (with help of a hearing person doing the job).

    The transcript is 99% accurate. Look to Barry's blog for my explainations there. He should approve my last comment there shortly and with my inputs on identifying the inaudible parts that I was able to do.

    Ella needs to apologize to the person who did this transcriptioning work. The person in question committed 20 hours of work just so that YOU and others can be FULLY INFORMED of what was said at the committee hearing since about 50% of the time none of what was spoken was interpreted. Barry's helper filled in the gap for you guys. Again, Ella, if you are "one of the Deaf leaders" then it'd be in your best interest to apologize to the person who did the transcriptioning work and to Barry for making a false claim against him.

    The transcript is real and accurate.
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  15. Thank you Mike for taking the time to verify the integrity of the transcript. Really appreciate it. It made me wonder what Ella is really afraid of?

    Regardless, thank you again, Mike.
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  16. Sigh,

    Barry, I'm sure you worked hard with the individual on the transcription. The problem is that your own personal credibility is definitely shaky due to your history of attacking, twisting, and half-truths,lies and myth-making, etc. You may choose to believe this or not. It's no skin off my nose, really.

    To be honest, had Mike McConnell been the one to present that transcription, people would have an easier time believing him than they do you right now. This is in spite of the fact that I disagree with McConnell most of the time, and question much, if not most, of what he has to say.

    As things stand, I prefer to wait for the official transcript and the language of the amended bill to be posted before I say anything.

    Shel
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  17. Shel,

    This is easily verified. I did it and vouch that

    So is Part I transcript from Smario which matches nearly exactly to that of Barry's transcript.

    You have now two transcripts (with a Part II coming soon from Julie Rem Smario - assuming it will come) to compare with and both are the same.

    We don't know how long til an official version to come out, so, either you go what's avialable right now or wait and not have any input til an official one comes out which may be days or weeks til it happens. Is the California legislature known for its fast turnaround on submitting official transcripts of a hearing?

    One thing for sure, Ella need to apologize...and quickly. Her own leadership is increasingly becoming questionable.
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  18. I wanted to add the vouch part. It was incomplete.

    As I said, this is easily vouched. Get a hearing person and have him or her listen to the video and read the transcript. That person will tell you the transcript is accurate. Why wait for an official transcript. Get somebody you know who can hear well and make a confirmation on the validity of that transcript.

    Don't you have hearing people you can tap into? Or even a hard of hearing person who can hear well to know the differences?
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  19. As long as there is corroboration between distinct parties at polar opposites on the information in the transcripts, I will go for it.

    Governments (of all stripes)are not known for their timeliness unless it suits their purpose. I will agree with you on that point.

    Food for thought, Mike... can you really blame Ella for questioning Barry's credibility after all that he has done? Had Barry NOT done all those things, there would have been no reason to question the veracity of the transcription he provided.

    Peace,
    Shel
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  20. Back to the central point. What is the difference between dark skin, curly hair, and stunningly difficulty of an infant acquiring language with parents trying to grapple with ASL skills, not able to afford full time ASL nanny, their jobs and family life in remote rural areas during 0 - 3 critical time when cochlear implantation and high end hearing aids offer good to partial solution for many children. I have witnessed them with my own eyes..with an interpreter interpreting everything what several 4 years old bilateral CI kids said during classroom interaction. I also have seen CI failures likewise..

    The actual importance in the political fight is for both language exposures at the beginning and maintain ASL as primary language for those who fare better with it or both languages concurrently.

    We are oddly a hyrid, medical and cultural. Instead of making this a clash, we can balance and be much better advocates for each others in a long run.
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  21. Shel,

    "Food for thought, Mike... can you really blame Ella for questioning Barry's credibility after all that he has done? Had Barry NOT done all those things, there would have been no reason to question the veracity of the transcription he provided."

    Doesn't matter. Before she even decided to open her mouth and challenge Barry on the validity and truth of the transcript she could have easily gotten somebody to listen to video while reading the transcript at the same time. And the she would validated it on her own instead of telling people not to read it. Does she not have any hearing people who can help her on this or is she the helpless person here? Where's the initiative here?

    Secondly, issuing a claim or challenge saying the transcript is not valid doesn't make sense because it was already made public and people have seen it. So, when the official transcript comes out Barry's own could be verified against the official one. Why would he want to try and mislead people with 25 pages worth of transcripted material that could be easily verified once the official one comes out? Either she isn't thinking here or she's losing it.

    She owes the transcriptionist and Barry an apology on that one for saying/implying that the transcript isn't valid and contains changed text in order to mislead readers.

    That never happened.
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  22. Ella doesn't trust Barry, just leave it to that.

    As far as CI in rural areas, even they have problems when they put their children in mainstreamed.
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  23. People who call Barry that he twisting.... BUT that blog is allllllll about transcript.

    So is transcript is twisting??

    Barry's blog show FULL of transcript... he even not said anything on before or after that transcript. He ONLY talk in his comment.

    The big picture is YOU can read all transcript, once you done the transcript... get out of his blog... Just don't read people's comment... simple. How hard is that?

    Jen
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  24. ~~~~~~~~~~~~~~~~~~~~~~~~~~~

    ASLElla,

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~
    WHY DON'T YOU HIRED YOUR OWN INTERPRETER TO DO TRANSCRIPT?
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~

    Jen
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  25. It's interesting how Romero said that at the hearing, she fell to the opposition's emotional plea about the bill trying to fix deafness when in fact the bill was never about that.

    The bill was NEVER about fixing.

    Kind of amusing, if you will. It was a ploy, a game plan of the opposition since they really wanted to kill the bill without providing any collaborative effort. That's the part that really amuse me, the fixing notion was never in the bill to begin with. Pretty wild, eh?

    As for the transcript, I trust that Barry's source, whomever that is, transcribed it as accurate as it can be. I went over the transcript and to the best of my recollection, it does seem to be accurate. Is it so hard for you all to just wait until the official transcript shows up before you open your mouth, lest, ya all make a fool out of yourselves? eh?

    Is it me or do you not see all these vampires out of their coffins? ack.

    (e, don't let them scare ya.

    Getting personal is the name of their game.
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  26. e), the whole of that quote you were quoting is that the gov't have no rights to tell people that they need fixing... It is just not their place.

    To give you a better idea what I'm saying, here is a link I found from a blog:

    http://sedm.org/LibertyU/PhilosophyOfLiberty.htm
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  27. Romero needs her date fixed

    Freezepop
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  28. For those who keep suggesting the medical model will change as social modelling gains ground are misguided I think. I doubt most who acquire deafness will EVER accept a social model, it is surely ONLY The domain of those deaf from the earliest years. Social modelling is directly linked to deaf culture, it always was. Will deafened change their view, doubtful. We challenge discrimination yes.
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  29. I wouldn't be surprised if Senator Romero actually supported the bill in the very first place. So maybe she gave in to the pressure to vote no? I could be wrong because I wasn't 'the fly on the wall' in her office. One "No" is better than nothing at all, indeed.

    Yeah, it's a good idea for the free-market thingy and it's pretty much like some ABC sellers do that in open public as rightfully so. However bashing against the other communication method(s) is not working.

    -Laura
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