EHDI – what it is, isn’t & could be / should be

In 2011 – i posted examining what EHDI stood for and how it works

Yep 5 years ago we began to examine the unexamined

EHDI stand for
E = Early – and they truly mean Early – the system tests fresh out of the womb even though the test sometimes gives false positives and false negatives and there is ABSOLUTELY NO REASON parents need to know on the very BIRTH day of their child if they are Deaf or not.  (the Joint Committee on Newborn Hearing – which pushed for EHDI’s creation, EHDI, the Center for Disease Control and the National Institute for Health also push for genetic screening – yep get them before they are even born)

H = HEARing – because to Hear is divine according to all the system folks and to be Deaf is WRONG in their world view

D = Detection – ie testing.  testing prenatally, testing at birth, testing with sedation at 3 mo., testing again and again and on and on

I = Intervention – which currently means prioritizing audition and spoken English and discouraging ASL.  Sure they might say they tolerate ASL or “its the parent’s choice” but read all the literature, attend all the conferences, look over all the pamphlets and you will see the push for all things oral / aural.

We have done this dance before folks – Back when the ICED Milan 1880 congress declared Oralism to be superior to natural sign language.

ICED Vancouver 2010 renounced and recognized the damage of that faulty and inhumane declaration but apparently EHDI has not gotten the memo.

EHDI ? p durr

“EHDI ? ” by P. Durr (using Rourkism style)

What should EHDI stand for ?
E = Early – not right at birth but by the third well baby visit – sure
H = Healthy – make sure they are getting language and contact and L O V E
D = Deaf – cuz it really is ok to be Deaf today in 2016
I = Identity – yes EHDI should tell parents, relatives, babies, specialists and more that it is good to be Deaf and being Deaf is a beautiful part of our bio-diversity

Yes EHDI should honor the UN Convention on the Rights of Persons with Disabilities that says no country should deny a Deaf child natural sign language and Deaf culture and countries should have Deaf folks be part of the decision making process on matters that impact Deaf people.

Yes EHDI should train all the various SYSTEMS (hospitals, doctor offices, audiology labs, speech pathologists, schools etc) that when a baby or toddler is found to be Deaf – a banner should be put up in congratulations and a basket of goodies delivered – Teddy Bears to slide signing hands through, DVDs in ASL, Deaf positive onies, De’VIA posters fingerspelling out L O V E, De’VIA coloring books and more.  Parents should be allowed to meet Deaf adults and insurance should over ASL classes and mentors and more.

Eradication of Language deprivation should be the goal instead of trying to annihilate being Deaf.  It is not a plague nor is it polio.

So i hope everyone will make a wee video of #whyisign – to learn more go to https://www.youtube.com/watch?v=autI7jMiAV0 (#whyisign campaign is March 13-15 to coincide with the EHDI conference in San Diego).

And the folks who keep shelling out big bucks to present and meet and greet at EHDI – please consider doing some real direct action because when we did in St Louis in 2012 we saw how EHDI really operates and who is in charge and why.

Since that time – numerous studies have come out about how ASL does not harm speech development and how denying ASL to Deaf babies does cause harm.  We also seen more and more proof of how bilingualism is good for Deaf babies and recommended by the American Association of Pediatrics. There is more much more but Audism Free America’s original 5 Demands of EHDI still remain today (see the 2012 demands below – EHDI has made some improvements as a result of AFA’s push but there is much more that needs to be done).

Five years have passed since i blogged about the various connect the dots we were discovering about how the EHDI system works and does not work and still the system favors:
Dr. Karl White’s NCHAM which does NOT post information on CI recalls or articles on harms or concerns and is very biased.
Pushes the Hands and Voices Guide by Your Side without Deaf input and expertise.
Stigmatizes being Deaf and makes parents feel they are negligent if they do not implant ASAP (and sometimes that is as early as 5 month old even though the FDA does not recommend it until 12 mo)
EHDI is still operating as if it is a crusade against a plague and not as a system that desires to ensure all Deaf children have access to a fully natural and accessible language and identity along with English and US culture.
Ohhh there is money to be had in them thar ears – there is much much much more for us to discover and understand just how embedded the “hearing” industry – the auditory industrial complex – is with EHDI

so it is my hope, plea, and wish that Deaf folks and allies follow the ways of MLK Jr and Gandhi and even the peaceful protestors that shut down the Donald Trump rally in Chicago.  EHDI currently promotes language bigotry and cultural genocide on many levels.  I do not want to see 5 more years go by of our people working “in the system” to augment crumbs of change.  5 Years in the lives of a Deaf babies brain are really really really IMPORTANT.

Those who will not divest are called upon to take some type of peaceful direct action otherwise you are really contributing to the prolonged ERA of Language Deprivation & Bigotry and that is NOT NOT NOT cool.

“Unless someone like you cares a whole awful lot,
Nothing is going to get better. It’s not.”
The Lorax by Dr. Suess

2011 post series examining EHDI.  i started with the I
EHDI – What does the I really mean?
https://handeyes.wordpress.com/2011/12/01/ehdi-what-does-the-i-really-mean/
The D in Detection of EHDI
https://handeyes.wordpress.com/2011/12/05/the-d-in-detection-of-ehdi/
EHDI – Let’s take a look at the H – Shall we? (the E is covered in this entry too)
https://handeyes.wordpress.com/2011/12/08/ehdi-lets-look-at-the-h-shall-we/

AFA’s 2012 Five Demands – in ASL https://www.youtube.com/watch?v=UZ8aZD7YbRo

1. Equitable funding .AFA calls upon EHDI, CDC, NIH, and US Dept of Education to address the historical and contemporary inequality of funding by increasing funds for bilingual (ASL and English) materials, early educational programs, Deaf mentoring programs, and services to parents. Equitable funding should be transparent.

2. Early Healthy Deaf Identification.
AFA calls upon EHDI to shift its approach to Deaf infants and their families from a pathological/medical bias to a positive/culturally-additive model in identification. To ensure this, parents need to be informed at the time of identification that American Sign Language is a linguistic human right for a Deaf child and Deaf/ASL early service providers are trained to work with them. In addition, EHDI should implement the labeling/way of thinking that was published in EHD’s 2011 Resource book in the chapter on Partnerships with the Deaf Community.

3. Stake Holders in Leadership positions.
AFA calls upon EHDI to hire Deaf people who use and support ASL/Deaf Culture in leadership roles at national and state levels.

4. Full Disclosure.
Audiologists should be required to explain the four international documents and their positions on the language and cultural rights of Deaf people. Also, they need to explain the recalls (both voluntary and involuntary) and risks associated with cochlear implants and Audio-verbal Therapy (AVT) programs.

5. Confidential Information and Genetic research.
AFA calls upon EHDI to guarantee that information about Deaf children and their families will not be used for collecting genetic information beyond consults with the families. EHDI will not support financially nor in terms of information sharing any research related to genetic engineering.

sharing from carol hirsch

 

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3 Comments (+add yours?)

  1. Padraic Saich
    Mar 13, 2016 @ 07:18:54

    They didn’t know, however, telling hearing people by see us saying “Deaf” is sending them the message that we, deafmute, are only for half of “sign language,” not full ASL. We were and are telling hearing people and lawyers that we only want “Deaf” rights, therefore, they won’t, can’t, and unable to fight for us to get full accessible needs. ADA and other laws are siding with deafmute pupils and adults. As I readed all case laws up to year of 2011, regarding to deaf rights, I noticed that we lost to get ASL as right to use for educational purposes for deafmute because those judges’ decisions were decided based on what brought into the hearings (courts). We failed, beside my motion, that made a landmark for hearing and speech-impaired individuals to get full “ASL” access, to show our argument to public by omitting our true ID of hearing and speech-impaired to just “Deaf.” ADA and other Acts only cover one accommodation for each disability. So, they, hearing are expecting that deafmute willing to talk instead sign for their speech-impaired, if we are keep saying that we are “Deaf.” How did we get full access to use ASL (two accommodations of 1) “use words/signs” for talking, writing, or signing, and 2) “comprehend words/signs” for listening, reading, or seeing) for one disability of deaf access? Because judges and lawyers didn’t know that we, “Deaf,” hacking the laws by get one accommodation of deaf access by interpreting into sign what everything that said, and get other accommodation of speech-impaired access by interpreting into say everything that signed, which the 2nd access that never gave us to acknowledge that we are speech-impaired, too. I came up with that legal dispute that FL Dep. of Ed. said that I requested two accommodations for one disability, lead me realized none of us including the judge realized that “Deaf” do have two disabilities that we entitled to get one accommodation for each disability. So, it is the “Deaf” who choose to speak instead sign by only fight for half ASL due to omitted true ID of deafmute.

  2. Padraic Saich
    Mar 13, 2016 @ 08:04:33

    This is for you. According to 42 USC section 280g-1 (c) stated about “coordination and collaborate.” In partly of the section of 42 USC section 280g-1 (c)(1) said, “… shall collaboration and consult with … consumer groups of and that serve individuals who are deaf and hard-of-hearing and their family; … persons who are deaf and hard-of-hearing and their family; …” What I learned that Massachusetts Commission for the Deaf and Hard-of-Hearing didn’t include ASL users nor deaf organizations run by deafmute people to part take the collaborate as required by the law and “Deaf” workers at the agency stopped me of trying to do something about it nor “Deaf” leaders in Massachusetts willING to side with me to ensure that we as deafmute must do something about it because I use mute as they, the “Deaf” leaders are grossly assumed that I am against “Deaf” but I am not approving them including you of label themselves as just “Deaf” as lying to hide true ID of deafmute behide just one disability. What a waste of years of not getting together to fix the flaw that I thank to federal law makers to make sure we including, but it is our job to put the law into practice via court to redirect them to collaborating and consulting with us as ASL users. How much longer you “Deaf” leaders want to stayING in the lane of barking up the wrong trees till get court order (the right trees to bark to) to disclosure right information to parents of just born deaf baby?

  3. handeyes
    Mar 13, 2016 @ 18:15:39

    Padraic – im cool with your use of the term of Deafmute as reclaiming it and yes it is true that ASL access is not just about being able to understand info but also about being UNDERSTOOD. and that ensuring that EHDI is about an Early Healthy Deaf Identity via ASL and Deaf culture will make sure that Deaf children are not raised to be monolingual or semi-lingual.
    Not sure if im still barking up the wrong tree in your opinion but i appreciate your comments here. Be well

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