Wednesday, July 2, 2008

ASLforLife, That's What I Tried Last Sumemrtime on Issue of EDHI

ASLforLife and the DeafRead readers and everyone concerned,

That's why I wrote this blog posting last summertime 2008 to urge the Deaf America to block the re-introduction of the Early Detection of Hearing Loss (EDHI) bill within the U.S. Senate.

I am very glad to see some people like you and others begin to realize what the EDHI intentionally pave the way for cochelar implantizing deaf babies and youngsters than just screening and providing balanced advices and options to parents of deaf babies and youngsters.

I have not been bothered with the follow-up updates of the EDHI bill so far. I rather see the EDHI bill being dead in the process than bringing up to the table for votes. If the U.S. Senate pass the EDHI bill, then the real nightmare for the Deaf America will come beyond our imagination.

It's time for us, Deaf America to act and keep the EDHI from becoming the real law!

We also could do something about the upcoming SCHI (health insurance for children) funding proposal for cochlear implant surgery on deaf babies and youngsters thru the Medicaid and other government fundings.

Our government really have no business of promoting the human engineering option or linguiscism of American Sign Langauge (ASL) at all.

ASLize yours,
Robert L. Mason
RLMDEAF blog *enclosure below from last summertime 2008 blog posting*

FYI, the re-authorization of "Early Hearing Detection and Intervention Act" (EDHI) legislative bill have been recently introduced to the U.S. Senate for final voting anytime this summertime.

This bill have been passed in the House of Representatives known as H.R. 2889 last April 2008. The EDHI bill is also an amendment to the S 1712 bill known as "Screening for Health of Infants and Newborns Act" sponsored by Senator Hillary Clinton in 2007. The S 1712 proposed bill have been referred to the U.S. Senate's Health, Education subcommittee twice in past year.

Many of us, deaf people are much aware of how this original legislation back in 2000, kinda responsible for spawning the path for parents of deaf babies and youngsters to get cochlear implant surgery quicker and sooner.

More and more deaf babies and children got cochlear implant surgery, BECAUSE of this damned legislation. That's what the AGBell had in mind when called and supported for the idea of newborns' hearing screening and intervention for quick way of getting deaf babies and youngsters to get cochlear implant surgery much younger than ever. NAD was too blind for supporting this 2000 legislation without making sure that every parents of would-be deaf newborn or youngster to give real options like consulting deaf agencies to get unbiased information and feedback.

"Early Hearing Detection and Intervention Act" legislation led the Food and Drug Administration (FDA) to approve the CI surgery for deaf babies much sooner after six months old. That's what the AGBell want to exploit parents of deaf babies and youngsters' emotional upsetness to find out about their baby or child officially screened as deaf. So parents of deaf babies and youngsters could rush to the decision to cochlearize their own deaf offspring(s) without giving a chance to see and appreciate what their deaf infant/child really is all about.

AGBell and other audiology and financial industry often got upset with the original legislation due to the lack of follow-up incentives for the intervention programs to be in gear to get parents of deaf babies and youngsters coming back for getting cochlear implant or digital hearing aids. They wanted to make sure that no cracks within the system for parents of deaf babies and youngsters leaving the hospital without considerations for cochlear implant or digital hearing aids.

The U.S. House of Representatives passed the similar bill related to the EDHI programs like
H.R. 1198 last April 2008 which enabled the National Institutes of Health (NIH) to establish the post-doctoral research fellowship program to effectively recruit researchers to become involved in early hearing detection and intervention and provide the agency authority (state agency) to support excellent family-to-family support programs developed by state EDHI programs and other organizations that are not yet widely implemented.

Why many business-oriented publications like the Forbes magazine bothered to report on the National Center on Deafness and Other Communication Disorders (NCDCD)'s Research Symposium on "New Mechanism in Auditory Discrimination And Speech in Deafness" at the AGBell 2008 Conference in Milwaukee? That raise many questions about real intentions of money-making incentives for American corporations to ride on the S 1712 bill within the 110th Congress's.

Here are our chances to block the Re-Authorization of Early Hearing Detection and Intervention Act bill in the U.S Senate to vote on! We could demand for having an open congressional forum with the AGBell and other audiology-interest groups to find out why many parents of deaf babies and youngsters and deaf clients to be heavily requested whether they want cochlear implant surgery during the simple audiology visit(s). Many deaf adults feel offended when they come to the audiology office for hearing aid-related problems and ended up of being stealthily asked if they are interested in getting cochlear implant or not.

Our elected national lawmakers ought to know what is really going on with the profit-driven industry to reel in the emotionally-wrecked parents of deaf babies and youngsters to cochlearize their own offspring without any considerable or unbiased information from any intervention programs within audiology industry and audiology interest groups.

The national lawmakers ought to explore the costly impact of cochlear implant surgery on deaf babies and youngsters with the creation of federal commission to study the long-term consequences on the health of deaf individuals with cochlear implant devices. The commission must be fairly balanced staffed with deaf advocates and deaf professionals for the unbiased outcomes of the commission's findings.

Please contact your U.S. Senator(s) to hold off the S 17172 bill until the creation of federal commission and the U.S. Department of Justice (DOJ) to investigative the audiology, cochlear implant and other audiology interest groups, ex. AGBell for possible racketeering and monopolistic practices along with too many "conflict of interest" occurrences.

There are also other critics of the proposed U.S. Senate bill, S 1712 from the privacy groups about the potential government database collection on every newborns about their DNA and health ailments.

ASlize yours,
Robert L. Mason (RLM)


  1. good point RLM; but dont we need to teach babies ASL as soon as possible too?

  2. dog food

    Can you get rid of that name of yours "dog food" and change it to more of "Brain Food"?

    ASL is the genuine Brain Food for all babies, oops, did I forget to add hearing babies? Oh, could it work for Deaf babies too?

  3. That's what I am trying to say about the necessity of consultations within deaf agencies and deaf professionals and deaf individuals to see the real side of deaf people living without the use of cochlear implant.

    Parents of deaf babies and youngsters need to think about the long-term consquences of CI surgery on their offspring.


  4. RLM,

    We shouldn't block it. It is a good idea to find the babies who are Deaf and HH as early as possible so they (and their parents) can start getting the services and language they need. But, definitely we should make them slow down, step back and look at the bill and make sure that important amendments are made to it so that the Deaf perspective is included and parents are informed (unbiasedly) of ALL options INCLUDING ASL and Bi/Bi. See my vlog on just that.


  5. Don G.,

    With due respect, this bill have been bounced back from the U.S. House of Representatives to the U.S. Senate since 2005.

    EDHI law will be shortly expired! Many privacy group and child advocacy groups expressed their concerns about potential government and health insurance intrusion upon every newborn's own privacy which the EDHI is amended to the major legislative bill - "Screening Newborns and Infants' Health". Too many U.S. Senators are truly skeptical about this major bill.

    My understanding is that the NAD is currently working with the EDHI committee to promote ASL and bilingualism so far. I never read or see the NAD's official announcement about NAD's latest efforts on the EDHI bill. How come?


  6. Don G.,

    I recently checked out your vlog postings. I did not find any of specific issue you brought up.

    Please tell me the title of your vlog. So I easily could find it. Thanks!


  7. RLM:

    No, we do not need to block this legislation. That amounts to cutting off our noses to spite our faces.

    What we need to do, is to push for continued EQUAL education in an unslanted manner about ALL options available to parents, and ensure that they are able to see past the myths associated with sign language (such as "your baby won't do as well with English if they learn to sign too early", etc.).

    I absolutely disagree with you on this one, I would rather we use the "bully pulpit" to educate and push for equal education.

    Eddie Runyon

  8. I think if you really gave a shit, you would have started a national nonprofit with the goal of educating parents about ASL at the same level that CI industry "educated" parents; I'd also like to see this nonprofit work WITH the CI industry, because frankly, with 98% of American Deaf kids having been implanted in the last few years, fighting against implants is just cutting your own foot off.

    Why not fight to make ASL education a REQUIREMENT for every Cochlear Implanted child? My god, that would make so much sense! If the implant didn't work, you wouldn't have to wait ten years to find out - the kid could sign and let you know! If the implant broke, the child would have a back up! You can easily destroy their claim that learning ASL makes the CI less effective - plenty of Deafies support your cause who have a CI themselves. So how about it? Are you going to do the work or just sit and blog?

  9. Anonymous:

    We can't FORCE ASL education on parents. Fighting to make it a REQUIREMENT would serve as a community deciding for a parent. No, what we should do is absolutely fight to make sure it is available on an EQUAL footing, but it ultimately is the parent's decision at that young of an age.

    The 98% number that you use, if I am not mistaken, was actually a number derived from ONE state (North Carolina), and is not representative of the entire country. I think what we all need to do is take a deep breath and focus our efforts on education, yes, but not FORCED. That would serve the purpose of turning people off even further.

    Eddie Runyon

  10. Eddie:

    Sauce for the goose is sauce for the gander. Right now the medical community is deciding for the parent by forcing them to get cochlear implants and avoid ASL. I don't accept your argument. By making it a requirement that parents do both, they are EXPOSED to both - and they and their child can decide how they want to proceed after they've experienced BOTH.

  11. I support that about newborn hearing screening and early intervention, of course doctor will want to implant severe-profound hearing loss becuase its the best tool out there for them to learn to speak clearly and listen effectively with AVT. If someone found very effective with low percentage of failure for completely blind people to have enough vision to walk without canes or if very successful, can ride bike, do anything they want, they'd want put that on as many blind people/children as possible.

  12. RLM,

    Sorry I didn't check back earlier. My vlog posting was titled "Legislative Agenda #1 (Easiest)


  13. After viewing your three vlog postings from the Legislative Agenda #1,#2 and#3. How interesting!

    I will make the following response on another blog posting of mine this July 4th weekend if time permits.

    Your suggestions are reasonably pragmatic. That's why I urge the NAD and the American deaf community to call for the creation of formal recognization by our national government to desginate the American Sign Language under the protection of minority or community language.

    Many countries including Australia already recognized sign language as part of minority language along minority rights and protections, etc.

    Many thanks for responding to my Q's. I am still eerily opposed to the re-authorization of EHDI which seen sleathily as some kind of eugenic bill.


  14. Anonymous:

    You said "Sauce for the goose is sauce for the gander", and go on to imply that it is right to force the requirement of ASL education onto the parents. I'm sorry you don't accept my argument, however, I have to say I really don't give a sh** if you do or not.

    The fact of the matter is this: you can NOT argue that forcing the ASL upon them is any different at all than forcing them to learn to speak, for example. Both forced opinions would be wrong, no matter which side you come down on. What IS acceptable, is requiring that ASL be provided as part of the educational aspect and that it be presented in an EQUAL manner to all other options, and allow them to make an informed decision.

    Forcing ANYTHING down anyone's throat will naturally make them more rebellious towards it because it goes against the very grain of our free will.

    Now, I don't necessarily agree with a lot of opinions from both sides of this debate, but clearly, the consensus is that we need to educate on the same level as the other options. I believe, if presented fairly and equally, with supporting facts to back up any conclusions drawn about the benefits of ASL, many parents will use it or select it for their child as an additional tool.

    Regards, and Happy 4th of July,

    Eddie Runyon

  15. Abbie,

    In response to your question whether I have children or not.

    Nope! That doesn't meant to disqualify me from being concerned about the well-being of deaf babies and children.

    Our youngsters are the real precious resources within the humanity. We need them for our future leadership and decisions affecting our livelihood.

    Why ask me this question out of curiousity?

    I really wish that I have my own children.


  16. Abbie:

    Just in case that question was aimed at me, yes I do have two beautiful, vibrant children. No, neither is deaf or hard of hearing, YES, both of them do sign quite a bit. The 7 year old boy is a work in progress, he's more interested in making up signs to see if Daddy can guess what they are (LOL-typical boy), and my 11 year old daughter is a very adept fingerspeller who can also sign well enough to carry on a conversation with me.

    Eddie Runyon

  17. RLM,

    I asked that question with no means of attempting to discredit your concern but to simply get a feel of whether or not you are lobbying against this bill as someone who has or has not went through the experience of wondering whether or not a child has come out of the womb free of any birth defect. For clarification purposes, I am not limiting this to deafness but the whole slew of medical maladies that can happen.

    The fact that most of the children that are born deaf are born to hearing parents and being unable to hear is not normal to them. However natural it is to you, it is not to them. They deserve the right to know whether or not one of their child's senses are not working. I'm not a parent myself but I would want to know if my child could not hear, see or even feel me. I would want to know if there is any potential problems or life threatening illnesses.

    With that being said, I support the bill. What I don't support is the lack of support services or mental preparation of the family extended to parents when they find out their child is deaf. I am for giving them informed and unbiased choices. I am all for any child that has a hearing loss in learning how to speak AND learning ASL permitting their chosen learning style, you have to remember not all children are visual learners. If these methods of communication were combined in a positive light, you can rest assure that more people be more acceptable in putting them in action.

    Besides the DBC with their half hearted approach to reach out to hearing parents, I don't see how the Deaf are taking the initiative in showing proof that growing up without amplification can equal or better then their hearing peers. Unfortunately, I don't see any kind of research that supports that theory. If you have access to that kind of research, I would love to see it.

    I feel that the real problem lies in the lack of showing that the combination of communication methods in a positive light. I know several parents that have children with a CI are open to learning ASL. Yet, they are berated and insulted for making the choice to give their child some semblance of hearing, counterproductive and unattractive way of attracting the Deaf culture, is it not? It is no known secret that you can catch more bees with honey. It is what it is and I wish more people would be open to adapting with the times instead of pushing them away.

  18. Abbie,

    Oh I see what you make your point regarding the following issues around deaf babies and youngsters.

    I am in pretty hurry with other errands before catching up with the open-captioned film screening of "Wall-E" film tonight (Wednesday). I am supposed to meet someone this evening, but have to re-arrange everything due to weather factor. Gotta go now.

    I will get back to you tommorow afternoon whether I have some time. Okay? :)