AG Bell NAD & You & Me

Text below video box:
https://youtu.be/PeASSb6EYl4

Greetings:

I’ve gotten a lot of emails about AG Bell Association insulting Nyle, insulting Deaf people, insulting sign language, insulting research, insulting facts, and insulting truths. (see http://www.agbell.org/in-the-news/response-nyle-dimarco/)

Yep, that is what AG Bell does. It’s really nothing new. That is their way since the beginning.

Many of you are upset and that is good. We should be upset. What they are doing is unacceptable! I’m here not to show the errors of their ways – the falsehoods behind their offending statements. Am i here to be on the defense against their lies – NO – I don’t feel a need to do that. It is obvious that they are 100% wrong in what they are saying. I hope that other linguists and psychologist will post up facts. I don’t feel we need to be on the defense. Who should have to defend their words? They – AG Bell – should. Why? Because AG Bell has been practicing AUDISM against Deaf people since its conception. It has been practicing PHONOCENTRISM (the belief to speak is superior to signing or writing) since its conception. AG Bell has the STRONG belief that Speech is superior. It practices the belief of lingiucism – it believes that English is superior to ASL.

The recent statement from AG Bell Association (http://www.agbell.org/in-the-news/response-nyle-dimarco/) is BIGOTRY – Cultural and linguistic BIGOTRY against Deaf people, against Deaf culture, against Sign Language. They have been doing this since their beginning and its nothing new – in fact it’s their MISSION in life.

AG Bell, the man, himself was against sign language with Deaf children in schools, against Deaf teachers, against Deaf marrying Deaf. He wanted a perfect race (eugenics) – he did not want to see more hereditary Deaf children created. So he founded the AG Bell Association and it adheres to his principles. AGBAD is against sign language. At times they have tried to word smith and cloak their bigotry but every once and a while they overtly show their true colors by making public statements in the media. But regardless of their public actions – throughout time they have enforced a strict practice of Oralism. Fiercely supporting it. Occasionally they get in hot water for making a public statement and its good that their masks comes down and people see them for what they are but we should know that they have been doing this since their origins and it really is NOTHING new for them.

I’m here to sign out what? Number one – that the NAD (National Association of the Deaf) must stop being on the same committee as the AG Bell –(Deaf and Hard of Hearing Alliance) http://usicd.org/doc/DHHA%20CRPD%20Letter%20FINAL%20%282%29%206_2_2014.pdf (added here since the DHHA website is down – AG Bell and NAD also sit on the Council on Education of the Deaf http://councilondeafed.org/member-organizations/) NAD should not serve on the same taskforce / councils /committees with AG Bell. They should step down from such affiliations in protest showing that they will not do business with such a bigoted association. NAD needs to make a strong statement. Previously the CEO of the NAD promised they would make a strong statement against any organization or individual that campaigned saying oralism was superior to ASL but then later the NAD got evasive and backed down. NAD needs to confront AG Bell’s conduct. They need to.

 

If people want to demand an apology from AG Bell that is fine but for me – I am not interested in an apology. I want them to stop – to cease and desist from their persistent campaign against ASL. Enough is Enough.

 

EHDI on the state level across the country and NCHAM, which gets a lot of funds from NIH and CDC and is responsible for gathering information and disseminating it related to Early Hearing Detection and Intervention (note I do not sign the recommend “grab/seize opportunity or Involve sign” for intervention because EHDI is still about INTERRUPTING parent and Deaf bodies via “deafness” frame) – NCHAM is run by Dr. Karl White and the NCHAM lists different resources and services for parents etc. – lists AG Bell Association. Many State level EHDI services lists AG Bell Association. If you look around to various agencies, programs, etc who do they list for referrals, resources, services? AG Bell Association will often be at the top of the list. It’s often at the top because it starts with an A and A is the first letter in the alphabet – when in fact it shouldn’t be listed at all. AG Bell Association should be REMOVED from any such listing because they practice bigotry – they promote hatred of ASL and Deaf culture. This has been proven throughout time.

Us being upset about AG Bell’s response to Nyle and the Pepsi commercial is fine and right. At the same time before AG Bell had sent out a letter to Deaf schools with membership cards. When the teachers all over the country went to their school mail box and saw they got a letter from AG Bell Association they were disturbed and upon opening up the letter they found a unwanted, unsolicited, offensive membership card with their OWN names on it with their title as “Hearing Specialists.” NAD said and did nothing to protect Deaf teachers from this tactic by AGBAD.

Many people were upset as was AFA Audism Free America so they held a vigil at AG Bell Headquarters in Washington, DC and made copies of these offensive “Hearing Specialist” AG Bell membership cards and distributed to folks to burn in protest. A symbolic measure to communicate to AGBAD to stop sending out such “membership cards” and since then they have not done that again.

Thus it is important for us to confront such oppressive practices – not just when famous people are attacked or because of the Pepsi letter. It’s important to challenge the everyday oppressive practices of the AG Bell Association and its promotion of the falsehood that speech is superior.

Last year or the year before that, the president of AG Bell Association wrote a horrible letter in response to an article – she wrote about how superior cochlear implants were since her Deaf son has cochlear implants and when he is on his bike riding she can call him home to eat and he will hear her and come back thus making life easier for her and all hail to the powers of CI and speech and all curses for the inferiority of ASL. http://www.agbell.org/AGBellResponsetoPediatrics/

Was there a great outcry by the community – no because there was no famous person involved so we really need to look at how on-going the AG Bell Association’s campaign against ASL and Deaf culture has been. This recent flare up about Nyle’s and the Washington Post article (https://www.washingtonpost.com/news/reliable-source/wp/2016/03/28/a-dancing-with-the-stars-contestant-is-vying-for-a-white-house-correspondents-dinner-invite/) – in a few weeks the noise will die down and AG Bell will keep up their sheath-like campaign against ASL and Deaf culture. We need to keep an eye on that and challenge it again and again.

People should host vigils and rallies at AG Bell Headquarters periodically so that the public is aware of what AG Bell Association is playing at. Now with the Nyle’s incident – it would be a good time for folks to have a peaceful rally at AG Bell Headquarters – to practice their first amendment rights of freedom of speech/sign and assembly.

Last summer some of us went to AG Bell Headquarters – called Volta Bureau – which is near Georgetown University. We put 12 black flags in memory of 12 Deaf children who died from Cochlear Implant complications way back in the beginning of experimenting with implanting children. Since that time many others have died from CI complications in the US and other countries – although it is hard to get those facts and details out to the public. (see https://usdeafhistory.files.wordpress.com/2013/12/final-transcriptforpanelexcerptpetitto1.pdf) 12 flags were planted in their memory. AG Bell Association has gotten a lot of money from CI corporations. They have had their circle alliance with different cochlear implant companies that have been sued for fraud and faulty cochlear implants that leak and cause shocks and have had recalls.

AG Bell should be challenged not to be pushing cochlear implants onto innocent parents when they first learn their newborn or infant is Deaf and are looking for answers.

It’s important to watch the various systems that we often allow to go unchecked without our challenging them and holding them accountable. We also need to watch our organizations and leaders that some time refuse to see the truth or even work with various oppressive systems and then later those systems like AG Bell and EHDI say “we work very closely with the NAD” or “we work very closely with Deaf leaders.” They take advantage of those associations and claim that they are not at fault while scapegoating the Deaf orgs and individuals because those Deaf folks are allowing it. We need to challenge and not just passively accept the status quo.

Yes I predict the NAD will write a letter to AG Bell wagging their finger at them “tsk, tsk, tsk AGB. Don’t do that” and then be done with it allowing AG Bell to continue doing OTHER THINGS that are much worse. ADDED 4/4/201One write up by AG Bell with misinformation which is wrong and bad and should not be tolerated – at the same time have a fit over that one action when there is a long history of much great bad deeds that directly adversely impact Deaf children due to Oralism – we need to stand oppose all forms of oppression. Not just today’s situation but 3 weeks from now, 3 month from now, 3 years from now. Confront, Confront, Confront.  bye

ADDED: important blog by Amy Cohen Efron examining AG Bell’s history of having a fit any time ASL and the Deaf-world is shown in a popular light to the greater public
AG Bell Belittles Nyle DiMarco
http://www.deafeyeseeit.com/2016/04/01/ag-bell-belittles-nyle-dimarco/

 

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

 

Updates

greetings all

have much to share but have been BUSY so just some announcements:

1. the Georgetown symposium honoring the 100th Anniversary of Vedtiz’ Preservation of Sign Language and three major Pioneers to Sign Language research and documentation (J. Schuchman, B. Kannapell, and D. Cokely) was grand.

2. the NTID 2nd Deaf-mute Banquet and film discussion night honoring l’Epee’s 301st birthday and Veditz’ 100th anniversary of Preservation of Sign Language and other great films from 1913 was AWESOME!!!!!! i was so overjoyed!.  hope to blog about it soon.  You can see pix from the events at https://www.facebook.com/photo.php?fbid=10152043454514626&set=a.10152043454394626.1073741861.110254959625&type=1&theater

3. there is a new website up featuring LOTS and LOTS of great stuff from George W. Veditz – feel free to browse it – especially all the primary documents.  If you have a question, you’d like to ask him – you can post it under ASK GEORGE or send an email.  see see what ya get back https://veditzsite.wordpress.com/author/veditzsite/

4. The NAD had passed a motion re: Language Deprivation back in July of 2012 and according to the approved motion – “A full report including the first draft of a model legislation must be completed by December 1, 2013.”
Today is Dec 1, 2013 but i have seen NOTHING.  As in NADa.  Hopefully the NAD will share the draft legislation soon because while i was at the Gallaudet Archives looking through all the old reports by the NAD i couldnt help feeling like the FLA situation is very similar to what went down in Nebraska under signing CODA Oralist fanatic Frank Booth.  The NAD motion which was proposed by Kelby Brick is at the bottom of this blog entry in full so u know what we have to look forward to once the NAD does what it said it would do.

5. today is World AIDS Day so pls help to circulate these two ASL videos on HIV testing – it can save lives so pls do do.

Tapiwa Talks about Testing http://www.youtube.com/watch?v=ScdC9c2DQTA

Info on HIV testing http://www.youtube.com/watch?v=LYyTz-Yil44

6. The Bear Hunt battle is back a bit as Dr. Eckert was challenging its presence in front of a Deaf school via a petition and as im seeing folks wake up more and more to the injustice of our (meaning us White folks) mis-representation and mis-appropriation of Native Americans to white-wash our genocide against Native people, their languages, and their cultures.

older entry on the topic – at the bottom of that post there are links to vlogs about the subject too https://handeyes.wordpress.com/…/10/03/bear-with-me-please/

————

NAD language deprivation motion

INFORMED DECISION-MAKING AND LANGUAGE DEPRIVATION 2012-KY-PUB-025
Author’s Name: Kelby Brick Seconded by: Beth Bendict, Nancy Bloch, Gertude Galloway, Jay Innes, Tawny Holmes,
Richard Jeffries, Kent Kennedy, Libby Pollard and Roz Rosen
Proposal: The NAD shall set up a Headquarters Ad-Hoc Committee to look into developing model state and federal legislation to prevent language deprivation.
The Committee shall be comprised of individuals with expertise in various relevant areas including legal, educational and socio- and neuro-linguistic development to look into the possibility of making liable actions that causes harm to Deaf children as a result of the deprivation of American Sign Language and develop model state and federal legislation for such liability.
The committee should also look into developing model state and federal legislation that would require medical and audiology personnel to refer deaf infants/children and their families to American Sign Language instruction and education prior to undertaking any medical procedure that may presume to provide hearing.
The committee should also develop a strategy for the adoption of these legislation including identifying which states may be most favorable as early adopters of those legislation.
This is to be an ad-hoc Headquarter committee reporting to the CEO. A full report including the first draft of a model legislation must be completed by December 1, 2013.
Rationale: Past attempts through the educational system to ensure that Deaf children are not isolated and linguistically deprived have experienced extremely limited success. Alternative approaches needs to be fully explored.
This motion is timely because the United Nations developed and adopted the Convention on the Rights of Persons with Disabilities (“CRPD”) to advance equality further throughout the world. The CRPD makes repeated specific references to the deaf community and sign language in its text.
The rationale and justification for this proposal comes from the abstract of Language acquisition for deaf children: Reducing the harms of zero tolerance to the use of alternative approaches; Harm Reduction Journal 2012, 9:16 which specifically states:
“Children acquire language without instruction as long as they are regularly and meaningfully engaged with an accessible human language. Today, 80% of children born deaf in the developed world are implanted with cochlear devices that allow some of them access to sound in their early years, which helps them to develop speech. However, through early childhood, brain plasticity changes and children who have not acquired a first language in the early years might never be completely fluent in any language. If they
miss this critical period for exposure to a natural language, their subsequent development of the cognitive activities that rely on a solid first language might be underdeveloped, such as literacy, memory organization, and number manipulation. An alternative to speech-exclusive approaches to language acquisition exists in the use of sign languages such as American Sign Language (ASL), where acquiring a sign language is subject to the same time constraints of spoken language development. Unfortunately, so far, these alternatives are caught up in an “either – or” dilemma, leading to a highly polarized conflict about which system families should choose for their children, with little tolerance for alternatives by either side of the debate and widespread misinformation about the evidence and implications for or against either approach. The success rate with cochlear implants is highly variable. This issue is still debated, and as far as we know, there are no reliable predictors for success with implants. Yet families are often advised not to expose their child to sign language. Here absolute positions based on ideology create pressures for parents that might jeopardize the real developmental needs of deaf children. What we do know is that cochlear implants do not offer accessible language to many deaf children. By the time it is clear that the deaf child is not acquiring spoken language with cochlear devices, it might already be past the critical period, and the child runs the risk of becoming linguistically deprived. Linguistic deprivation constitutes multiple personal harms as well as harms to society (in terms of costs to our medical systems and in loss of potential productive societal participation).”
Because Headquarters have the legal staff and interns along with necessary key relationships with those having needed expertise, the committee should report to the CEO.
Fiscal Impact: Minimal. The ad hoc committee will be mostly made up of volunteers. NAD staff expertise on the commit- tee would be most helpful and staff’s time will have the biggest fiscal impact. The committee may also benefit from the research expertise of one of the law student interns that the NAD often has. The CEO may lend NADstaff and interns to the committee as he sees fit.
Steering Committee Comments: Merits Consideration.

Senator Schumer’s reply re: UN CRPD and V is for VOTE

I have been sending my Senators emails re: the importance of the Senate ratifying the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD).  this is the response i received from Senator Schumer (D-NY) on Oct 3, 2012. (you can find your Senator and contact info here http://www.senate.gov/general/contact_information/senators_cfm.cfm

Audism Free America (AFA) has a sample letter at http://audismfreeamerica.blogspot.com/2012/07/urge-ur-us-senators-to-ratify-un-crpd.html
And dont believe all the bs some conservatives are trying to spin about US sovereignty.  We ratify plenty of UN conventions and treaties.  They just spinning.  And take a look at the first Americans sovereignty which the conservative wrong-wing is so eager to trample on.
And send your letter to your senators and get ready to vote on Nov. 6th.  Many hot races on the local, state, and federal level.  Everyday im amazed at what some folks are saying about my vagina and my rights.
Not registered to vote?  Check the listing at this link to see if the deadline to register has passed – if it hasnt then click your state and REGISTER – also has links for absintee ballots etc.
Rock the vote.  They counting on voter suppression to win the election – don’t let ’em.  Remind them that VOTING is what makes this joint a democracy and not a hypocrisy.  http://www.rockthevote.com/rtv_voter_registration.html?source=
peace,
patti
———–
Dear Ms. Durr:
     Thank you for writing to express your support for the UN Convention on the Rights of Persons with Disabilities.  I wholeheartedly agree that people with mental and physical disabilities need to be protected from discrimination and we must ensure that they have the adequate resources to better their lives, which is why I was a cosponsor of the original Americans with Disabilities Act (ADA).
     Throughout my career, I have been a strong advocate for people with disabilities. Last year, I signed a letter to the Senate Appropriations Committee urging them to fund at the highest levels the Individuals with Disabilities Education Act in order to fulfill our promise of truly assisting our schools in the education of students with disabilities. I have also continued to urge the Senate Budget Committee to fully fund the Social Security Administration for Continuing Disability reviews in order to reduce the long wait times that many applicants face.  I am troubled by the long wait times facing New Yorkers who are in the process of applying for their disability benefits.  New York State has a backlog of more than 50,000 disability cases, and the average statewide waiting period for a decision is nearly a year.  As a member of the Finance Committee, which has jurisdiction over the Social Security program, this remains one of my top legislative priorities.  I will continue advocating for the rights and the needs of Americans with disabilities in the workplace, schools, and beyond.
     The UN Convention on the Rights of Persons with Disabilities has the stated purpose to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.  This would include such rights as the right to health, education, work, inclusion in society and to vote.
     This treaty has been signed by the United States government, but must still be approved by the Senate.  While the Senate Foreign Relations Committee has held a hearing on the treaty, it has yet to be introduced in the Senate.  I do not sit on that committee but I will closely monitor the treaty’s progress in the Senate.
     Again, thank you for contacting me regarding this important issue. Please feel free to contact me in the future if I can be of further assistance on this or any other matter.
Sincerely,
Charles E. Schumer
United States Senator

it’s a “brave new world” after all

it’s a “brave new world” after all

it’s a “brave new world” after all

everyBODY sing! cuz ya know not everyBODY can sign seeing how it is still seen as illegitimate and virtually illegal to be… Deaf and a person of the eyehand

dont believe me well maybe u will believe the young person who told me the doctor forbid his folks from letting him go to a Deaf school cuz he had a CI

dont believe me well maybe u will be interested in the gerbils that got some stem cells and the world is all a flutter about a “CURE” even though the scientists and doctors are saying – hold up – its a far leap from gerbil to human and why isnt anyone paying attention to the 10 HUMAN babies that got stem cells.  one study is super cautious about worrying about the effect (tumors anyone) while another is going full throttle on newborns

and there is always that pesky question of geez what do u think is so horrible about being Deaf that u r rushing to such ends to END IT – the scourge (see Dimitry Dornan’s little slip up)

i mean even marlee matlin (of starkey hearing devices fame) is offended by folks coming up to her in the grocery store saying in front of her youngin’ “i heard they have a cure for YOU now”

are we that undesirable?  odd, we dont seem to think so. in fact many Deaf folks like being Deaf – they just don’t like discrimination, oppression, injustice – ie AUDISM

so check out that newborn humans (not gerbils or guinea pigs) but real live bona fide human being Deaf babies who are being experimented on in Texas.  not very humane u say – nah not really but anything is better than Deaf they say.  it will be hard to check out cuz the only info is coming from those over sentimentalized news stories of “CURES” a plenty cures galore – while the doctors are always saying “its too early to tell”

placebo effects on the moms perhaps

why isnt anyone studying that HUH?

phase #1 of the stem cell experiments on newborns (and you know if they were on cats the PETA folks would be going nuts) is just to make sure that the testing and procedures dont leave any overt marks – it is not to see if it works or if it is SAFE in the long term – like ten years out.  its just to see if the CT Scans and injections and prodding and poking dont cause too much harm.  Phase two will be to measure if it even helps their hearing.

and this too might involve ct scan / mri etc which a different study said ct scans for kiddies is not cool (increased rate of leukemia and cancer in such kids with repeated exposure)

just things we will never know about or will only get leaked out after they have ironed out some of those issues.  Kinda like how we cant get the actual number of deaths associated with cochlear implants.

so i have begun the big book folks – no not that one.  no not that one either – done read those before several times.

i type of The War Against the Weak: Eugenics and America’s Campaign to Create a Master Race by Edwin Black.  http://www.waragainsttheweak.com/

im not that far into it simply because its already upsetting me but its a long over due “haftado” so do i must.  thankfully it is very well written and ive already marked up and dogeared almost all the pages i have read thus far.

last night i read a short article re: how “the System” socializes parents of children with CIs into a tightknit cluster of folks who monitor each others diligence in abiding by the doctrine of CI – ie oral / aural ONLY. oy

and last week Mishka Zena shared with me some of the dots she has been connecting re: genetics and the suppression of Deaf folks

now if u r anything like me and thee – we dont want to know this stuff.  we really dont want to see how much the powers that be want to make us ‘un’be but be awake to be aware to be active to be alive and ensure OTHERS have the right to live is what we must do do so – wake up little darlings wake up and if u were one of the many that got bamboozled by Gally and other folks dangling the FREE connexin 26 deal (wee nothing is free folks) in front of ur eyes and u went and got “sampled” so u could know know with out knowing completely what they r doing with ur gene pool – do not beat urself up about it.  they r very slicky and tricky.  just maybe give ’em a ring and ask for ur file, data, and sample back.

knowledge is POWer!

below are some links that mishka zena had shared and more

we r talking eugenics folks

wake up

and know i love ya.

and happy new year for those who celebrate it.  had lovely honey cakes from my honey and shul’s sermon was about ushering up courage and finding the waters that will forge us forward.  handy indeed.

————-STUFF TO PONDER—————

from http://connection.ebscohost.com/c/articles/22725589/reality-check
Newsweek (Pacific Edition);10/16/2006, Vol. 148 Issue 16, p8

“This article looks at embryo screening practices. More than 3 million children worldwide have been born through in-vitro fertilization (IVF), but nearly 500,000 embryos have been rejected in the U.S. alone, having been screened out for having fatal diseases, low-risk illnesses like arthritis, and even illnesses with no clear genetic cause, like leukemia. 42% of U.S. IVF clinics allow parents to select for gender” (1)

——————–

from http://articles.orlandosentinel.com/2003-07-20/news/0307190029_1_deafness-gene-embryos

Test Finds Deafness Gene In Embryos

July 20, 2003 By Washington Post

Australian fertility doctors say they have used a genetic test to screen out embryos that carried a gene for deafness — the first known instance of pre-selecting embryos to eliminate a non-life-threatening trait.

Their action has raised eyebrows in some ethics circles, especially because some of the embryos initially screened out would not turn out to be deaf, but would only have carried the gene that increased the odds of having deaf offspring. Others, however, say the work is in keeping with a longstanding ethic that favors anything that enhances the health of newborns.

Doctors at Monash IVF in Melbourne were using “pre-implantation genetic diagnosis,” in which doctors look for a gene of interest in one cell taken from a developing eight-cell embryo created by in-vitro fertilization.

The technique has allowed parents to identify embryos bearing fatal genetic defects and transfer only healthy ones to the womb. In this case, doctors screened for a gene mutation that causes deafness if inherited from both parents. Each parent had one normal and one mutated copy of the gene and so had normal hearing. But there was a 25 percent chance that any child they produced would be deaf.

—————————–

from http://www.ncbi.nlm.nih.gov/pubmed/18051563

[Prenatal diagnosis for hereditary deaf families assisted by genetic testing].

[Article in Chinese]

Source

Department of Otorhinolaryngology Head and Neck Surgery, General Hospital of Chinese People’s Liberation Army, Beijing 100853, China.

Abstract

OBJECTIVE:

To provide prenatal diagnosis for deaf families, which the first child was confirmed to be hereditary deafness caused by gap junction beta-2 (GJB2) or SLC26A4 (PDS) mutation, to avoid another deaf birth in these families.

METHODS:

Eight deaf families joined in this study. Each family had one child with severe to profound hearing loss while parents had normal hearing except a deaf father from family 8; mothers had been pregnant for 6-28 weeks. Genetic testing of GJB2, SLC26A4 and mitochondrial DNA (mtDNA) A1555G mutation were firstly performed in probands and their parents whose DNA was extracted from peripheral blood, and then prenatal testing was carried out in the fetus whose DNA was extracted from different fetus materials depending on the time of gestation.

RESULTS:

The probands from family 1-4 were found to carry homozygous or compound GJB2 mutations while their parents carried corresponding heterozygous GJB2 mutations. The probands from family 5-8 and the deaf father from family 8 were found to carry compound SLC26A4 mutations while their parents and the mother from family 8 carried a single SLC26A4 mutation. Prenatal testing showed that the fetuses from family 1, 5, 8 only carried the paternal mutation and the fetuses from family 2, 3, 6 didn’t carry any GJB2 or SLC26A4 mutations. The new born babies from these six families all had normal hearing revealed by new born hearing screening. However, the fetuses from family 4,7 carried the same mutations with probands in each family. The parents from family 4, 7 decide to terminate pregnancy.

CONCLUSION:

Prenatal diagnosis assisted by genetic testing can provide efficient information about hearing condition of their offsprings.

——————————

from http://www.asperbio.com/genetic-tests/panel-of-genetic-tests/usher-syndrome

Asper has been developed genetic test for screening mutations underlying all major types of Usher syndrome. Currently the test can be used for the screening of 631 mutations in genes CDH23, MYO7A, PCDH15, USH1C, USH1G, USH2A, GPR98, CLRN1 and DFNB31. These genes carry mutations in patients with Usher Syndrome types USH1B, USH1C, USH1D, USH1F, USH1G, USH2A, USH2C, USH2D and USH3A as well as Nonsyndromic Hearing Loss and Deafness types DFNB2, DFNB12, DFNB18, DFNB23, DFNB31 and DFNA11 and also Retinitis Pigmentosa.

Identification of the causal mutations is important for the early diagnosis of Usher syndrome, which is relevant for the decision whether or not to elect for a cochlear implant, and for genetic counselling and for prenatal diagnosis. The test is available both with genotyping service (includes genotyping, electronical copy of the results report) and diagnostic package service (includes DNA extraction, genotyping, additional validation of the APEX-based analysis findings by dideoxy sequencing, interpretation, hard copy of the results report).

——————-LINKS relating to Connexin 26 testing——————

http://www.knightdxlabs.com/home/test-details?id=Connexin+26+%28Non-Syndromic+Hereditary+Hearing+Loss%2FGJB2%2FDFNB1%29

http://www.ggc.org/diagnostic/tests-costs/test-finder/connexin-26-gjb2-sequencing.html

from specialty labs informed consent form:
The DNA will be retained for a minimum of 6 months. In some circumstances, a patient’s DNA may be used anonymously as a negative or positive control sample in future testing, but, in this circumstance, all identifiers will be removed prior to re-testing and the DNA sample and results obtained will remain anonymous.

———————–

from Public Health and Genetics Information Series
Universal Newborn and Infant Hearing Screening and Genetic Testing

click for pdf www.hgen.pitt.edu/counseling/public_health/hearing.pdf

Some programs incorporate a screening protocol that may lead to genetic testing. The question is should genetic testing be a required component of all universal newborn and infant hearing screening programs?

ADDED: link to Steve Emery PhD blogsite that has links to Eugenics in the UK http://tigerdeafie.wordpress.com/2012/08/29/eugenics-in-the-news-and-our-research-dissemination-conference/#comments

ADDED: Where do we draw the line on ‘designer’ babies write up http://ht.ly/dOpQq

Viva Veditz B-DAY & 1913 commentary part I

George W. Veditz’ Birthday (Aug 13) is approaching and folks will be gathering at his gravestone on Aug 12 sun at 10:30 in Colorado Springs for a Day of the Deaf picnic so im posting up a series of vlogs i made last year to discuss Veditz the man, the NAD Motion Picture project and Veditz’ 1913 Preservation of Sign Language film.

totally wish someone else would discuss his film – cuz i get all excited and want to discuss so much and then always run into the challenge that some folks already know this and others haven’t even met George yet smile

but the bloke has definitely been hitting the big time lately – PAH!  Sorry we slow George and THANK YOU for always nudging us.  Coming to see u SOON!
PART I – Veditz Priceless Clip and Birthday (vlogged last year but got hidden when i did the SOPA / PIPA protest / black out and forgot to re-public it and when i did then it shows up as if just loaded yesterday – oh well smile)

Summary from last year: Veditz 150 birthday on Aug 13 – excerpt from his Preservation of Sign Language film – translation by Dr. Carol Padden “Indeed, our National Association of the Deaf has raised a fund of $5000 for this purpose. We have made a number of films. We have films of Edward Miner Gallaudet, of Edward Allen Fay, of John B. Hotchkiss and Robert MacGregor and many others. I regret that we do not have $20,000, for we could have used it all. If we had this amount of money, we could have performances in sign language, sermons in sign language, lectures in sign language. And not only would we American deaf enjoy the benefits of this, but no — deaf people in Germany, in England, in France, in Italy would also see these moving picture films. Fifty years from now, these moving picture films will be priceless.”
Links to:
info on Veditz https://handeyes.wordpress.com/2007/10/12/george-veditz-1861-1937/
full Veditz Preservation of Sign Language Speech http://www.nad.org/news/2010/12/historic-nad-film-selected-preservation-libra…
Other NAD films from the Moving Picture Project – click titles http://libguides.gallaudet.edu/content.php?pid=120564&sid=1083626
info on the library of congress National Film Registry selection of George’s “Preservation…” film https://handeyes.wordpress.com/2011/01/04/happy-centennial-to-the-nad-motion-p…

A unfunny thing happened to and from Kentucky

NOTE: as im just about to publish this i see a public “apology” from the ZVRS person who sent out the offensive email – see https://twitter.com/JuMoiwai/status/222441696527532033/photo/1/large

u can judge for urself what u wanna do do with it.  NAd Board President should still make a public statement methink.

——-

heye folks

as some of ya know i been in boycott of our beloved National Association of the deaf (NAd) for a while.  i delayed and delayed – i tried working with everyone i could.  i was given a promissory note that never materialized so i had to say – “im boycotting.  boo”

NOTE: yes i know i typed NAd with a lower case “d” but that is the way they want it so im honoring their wishes and YES it excludes me and thee but they dont care about that now do they?

boycotting is a form of civil disobedience – it is part of truth force / soul force. I was still hopeful that the NAd would get its sail up, compass set, and rudder rocking to finally leave its painted port but alas i discovered it has become rotten to the core after having sank “back into its old condition of comatose and servile inactivity.”

so what is the unfunny thing that happened on the way to Kentucky?

while i was making me way to the DeaFestival at a stop over in Detroit i see a tweet about a motion to make nicey with Governor Daugaard.  WTH.  Really?!  WOW

then i see… It passes.

and then i can feel the cold hard hands of colonization smack against the young hopeful faces of our future – slap slap.  You shall NOT challenge authority it says!

now the odd thing about this whole SLIDE in motion (dont even ask me about this messed up process of how a motion can be introduced so last minute cuz it all looks like one ole hot mess to me – the whole delegates being last minute with a bunch of conflict of interests and chaos – “better to rule u with dearie” so i guess i shouldnt have been shocked to see this coup come up but i was cuz well im a hopeful child.  I always believe in the greater good) Now the odd thing about this motion that passed is – it was Daugaard who TURNED DOWN THE NAD convention so why were folks chasing after him to have contact again.  NO MOTION was needed for the NAD to say in a month or two – oh Daugaard are you available now?

the NAD never uninvited him

the NAD never STOOD by us on this issue – he just became “unable to attend” – he didnt say he never would have contact with the NAD or was hurt or that he even gave a rats butt about any of this stuff.  Yet folks slip in a motion to go chasy chasy?

and it PASSES!  ha wow! wee

we, the wee people, were pissed so some good folks thought MUTINY – lets jump this sinking ship as its so rotten but someone slides up and says no no lets add an amendment and after alot of word smithing a bandaid is constructed.

Problem with all this is… sometimes wounds heal better in open air for all to see and feel.

ie – the amendment does nothing but give the APPEARANCE of something for nothing.

It hurt cuz its supposed to hurt – OVERT OPPRESSION is not COOL.

i do commend the folks who tried – who were there making the NOBLEST of efforts to re-mediate that injustice but the FACTS are:

1. no motion was even ever necessary – there was NOTHING in Daugaard’s “unavailability” that said he couldnt come hang with his homies at the NAD at another time

2. amending this unnecessary and unjust resolution ends up sanctioning it – better to leave it on the record for all to see how we grovel to be stepped on cuz that is what that motion was a grovelling to someone who wouldnt give u the time of day in KY and a slap on the face to the folks who stood for JUSTICE – who did NOT want someone who has a bad track recorded re: LGBT, anti-Women, Deaf school, and Native Americans to be associated with NAd.

Message is loud and clear – HE is more important than WE

ahh nothing about us!

So i sat in the airport in shock.  My heart was going out to the good folks and i was like well wow – im so glad ive been in boycott.

After landing we arrive and wow election results that are so obviously impossible that all u can think is WTH?  What is this butterfly ballot bonkiness???

And after walking around u see ohhhh just about everyone has some affiliation with one Video Relay service or another.  YEP we have been colonized and ENTRAPPED by the Relay system.  There is $$ in them their costumers.  Ma Bell still dividing and a conquering.

The air is thick with the competition and im like how did the NAd operate prior to this industry?

And im envisioning the day when teaching was a main profession of Deaf folks and thus teaching was of utmost importance and i realize how CAID has quietly been dying and how CEASD is not what it should be and how this industry competes for bodies the way another industry competes for bodies and NO BODY seems to be noticing.

But thankfully a few rows over is De’VIA central.  De’VIA = Deaf View / Image Art.  It is an art movement founded in 1989 by a group of Deaf artists committed to exploring works about the Deaf experience.  And here nearly 25 years after its conception De’VIA is in full glory.  She is beautiful and she makes me so so so happy i have come to the Kentucky DeaFestival.  I have read about it for several years now and several friends have told me “you must go” and so i went and i’m grateful i did.

Kentucky DeaFestival – i thank u for all ur work with that festival.  I thank u for bringing Deaf artists together.

Deaf artists – wow u rock.  Seriously u make me so joyful.  U make me so happy and yes a few of ya even made me cry a bit.  Gosh how u r shining.  This is the PERFECT time to be a De’VIA artist.  Folks r hungry.  Get busy creating folks.  U r a huge part of the mountain.

for the few days i was there it was – hugs, hellos, interviews, discussions, ponderings, and LOVE.  My take of the NAd Convention from the outside – mind you i never even went up to the 2nd floor where i assume most of the workshops and stuff took place prior to the DeaFestival but from my moments just walking through the lobby or the DeaFestival – it is very much like a humungous  class reunion.

And what is the class you ask – Deaf & Ally ASL folks – that is who.  Many of whom were raised oral / aural only but all of whom used ASL.  That is mighty fine to meet and greet so many folks i knew or feel like i have known via the net etc.  It was GRAND.  Love was in the air for me even with folks that well im not so sure about.  Still i love ’em and some folks look at me like “what r u doing?” and my answer is LOVE.  Im always gonna love folks.  The day i stop doing that – just roll me out to a pasture and leave me there.

And by loving it dont mean im all flowers and fakeness.  That is NOT my way.  Love to me means – i put forth my out stretched arms and will hug ya and love ya enuf to tell u the truth and to listen.

Its the best i have to offer.

and then another unfunny thing happened on the way home from Kentucky.  I see an email in which ZVRS is maligning Sheri Farinha’s supporters or “so called militants” and threatening their employees.

GOSH – 4th of July weekend and NAd puts a gag order on its Board members from using social media and then ZVRS tries to control its employees from having free speech.  I thought this was America.  Dang how corporate wrongs trump constitutional rights when corruption comes a courting.

Now ZVRS could have sent out memo saying – “hey folks r upset about the elections and we r a VERY small and dear community.  We, ZVRS of CSD, do not support any reacting and disrespectful comments or conducts on our behalf.  If you see anything out there in the wide world web that you feel we should know about so we can help to clarify things – just send it our way but otherwise pls know we do not want you to respond and if you it can not be as a ZVRS representative”

something like that but nah – lets just trash the Deaf folks on the ground.

So fresh out of the Kentucky gate – the NAd president, who is also a Vice President at ZVRS/CSD, and is replacing another former ZVRS/CSD employee, is in a pickle.  His company has trashed his people.  Do Do?

So far – NOTHING.  NADA.  Zilts.

Maybe if we were Daugaard – we would get more respect ;  )

but as the relay industry knows – customers count so the power u all have at ur fingertips is to boycott ZVRS.  Pull the plug if you are offended by their intentional misrepresentation of us “Deaf Militants”

No worries cuz even though ZVRS intentions were oppressive – we know better.  We know we are extremists for love, militants for love, and radicals for love.

We also know (cuz we READ, and THINK, and FEEL) that George W. Veditz said in his 1910:

“we constitute ourselves a militant vigilance committee to guard the interests and welfare of our class.” 

NOTE: George is not name calling – he is using militant as a description in terms of energy, passion, and commitment to our cause and our people – he is not using the term as NOUN.  The fact that the NAd has allowed for the ZVRS insulting memo to go unchallenged shows how far she continues to steer away from her root and her mission.

George’s right, just and good quote was in 1910 folks when the 1st wave of Oralism was starting to crash on US soil.  How do we know this quote – well cuz the NAD kept WONDERFUL conference proceedings (see google books for some that are up online) – lengthy and detailed and good.

Meanwhile today in the digital age, you can’t find the results of the NAD elections on their website nor the latest resolutions – one of which has marked Board Accountability as URGENT, which seems to be failing fresh out of the gate given the new president’s dual role and silence on the ZVRS unjust and silencing memo.

And so we come 100 and 2 years later to say – OK George you were right “And this is goodbye” and we gonna rock the house with just right and good activism.

We aim to be extremists of LOVE – Thank you martin and george

https://handeyes.wordpress.com/2010/07/21/what-kind-of-extremists-we-will-be-qqq/

I love the NAD – i hope she will wake from her coma and do do the good work.  The hour is VERY late.  It is long overdue for the Association to raise from its long lethargy of do-nothingness into the activity of doing something worth while.

The biggest item on the agenda should be the Prevention of Language Deprivation legislation folks.  Watch and see folks.  This is the make it or break it item for the NAd.  If some REAL ACTion comes out of that ad hoc committee within 6 month – hope may be revisited.

In the mean time i sadly remain in boycott of the NAd and ZVRS.

Again i do thank the Kentucky DeaFestival folks for hosting their festival and the De’VIA artists – u fill me with hope, faith, and love.  And the good folks on the ground who are aware, awake and aliVe.

Viva Veditz

Long Live, Long Live the emancipation of the Deaf

Added – NOTE: i havent sung the praise of the NAd convention organizers cuz i did not attend it but from the folks i did see they spoke favorably of the workshops and presentations and i know this is a HUGE undertaking so kudos should be given to them.

Peace,

Patti

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