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 (#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?
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)

AFA’s 2012 Five Demands – in ASL

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