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

stuff: vote, Deaf under Nazism, Sim-com, & Felix

heye all
i know i know – LLLLLLLLLONNNNNNNNNNNNGGGGGGGGG time no see.

thank u to the folks who checked in to see see if all was well.  all is.  just had a BUSY summer traveling.  the Viva Veditz celebration was GRAND – see Ruthie’s spontaneous and original 2-5 poem at the gravesite and click the AFA channel for other video from the ceremony.

And now after traveling here there and nearly everywhere this spring and summer – i is HOME and a busy bee again now that we all back to school – whoo hoo! hold tight!

so this is just a quick bunch of stuff:

1. VOTE – if ur not registered – GET THEE TO A BOARD OF ELECTIONS AND REGISTER!  this will probably be the most important election of our life time.  im serious.

if ya hate politics cuz u dont know who to trust – well like i told farmer abe when he asked me which candidate can i trust? – politicians generally are no longer trustworthy but some are worse than others so…do do?  VOTE!

this is a good website that compares Obama and Romney’s position on important issues – check it out as knowledge is power.  http://2012election.procon.org/

this site tracks LIES (liar liar pants on fire animated icon), Half True, and Truths – it also has links that explain in more detail – scroll down to bottom for over 120 pages of POLITIFACTS made clear http://www.politifact.com/truth-o-meter/statements/?page=2

2. BBC See Hear program about the persecution of Deaf folks under the Nazi Regime via the T4 (“euthanasia”) and Sterilization program (also covers Deaf Nazis) http://www.youtube.com/watch?v=GjAn0YBe4ls&feature=plcp

3. folks discussing the pit falls of sim-com – scroll down for vlog from ella mae lentz and an older vlog by ruthie jordan.  ella’s vlog reminded me of Johnson, Liddell, and Erting’s Unlocking the Curriculum document – it was GREAT then and is GREAT now.  read and/or re-read and circulate it folks – its really important and still sadly VERY relevant

http://saveourdeafschools.org/unlocking_the_curriculum.pdf

added – older blog from Dr. Don Grushkin re: Sim-com

and an older one from Ella on signed systems and “good enuf” mentality for ASL

4. Lots of folks make an outrage over a public school trying to change a Deaf child’s Hunter sign name but largely silent over a Deaf school changing another Deaf child’s name sign of ML on the heart given by his Deaf father to a sign name of “chubby” – hmmm

5. got a nice letter from Felix Garcia (Deaf guy in prison whose Hearing brother has since confessed to setting up) If you’d like to write to Felix see pix of address at bottom and include stamps if you would like him to write back.

Mother Jones article about Felix’ case http://www.motherjones.com/politics/2011/12/deaf-prisoners-felix-garcia

interviews with Felix at Deaf In Prison website (note some of the interviews discuss prison rape and is not intended for young audiences.  Link to transcripts under video box)

part I  http://deafinprison.wordpress.com/2012/06/30/felix-in-his-own-words-part-i/

part II http://deafinprison.wordpress.com/2012/07/15/felix-part-ii-is-now-captioned/

part III http://deafinprison.wordpress.com/2012/07/20/felix-garcia-interview-part-3/

part IV http://deafinprison.wordpress.com/2012/07/28/felix-in-his-own-words-part-4-end-of-disc-1/