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

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9 Comments (+add yours?)

  1. Jeannie
    Sep 19, 2012 @ 02:20:48

    Apparently Deafness is illegal because there are more and more Deaf parents that are having their visitation or parental rights severely limited or taken away because the courts are willing to listen to the lies against these parents. Usually it involves parents that are fighting over custody and also over a Deaf offspring. Who really suffers? Well of course the child. Because the “hearing” bias would rather have the child suffer the ill effects of a bad CI to maintain a lie – that the Deaf parent is forcing the child NOT to wear the CI– than to believe or talk to the child who would tell them that the CI is indeed defective and causing pain. Anyone speaking out against such injustice can be sued, as courts are putting gag orders on these cases.

  2. handeyes
    Sep 22, 2012 @ 02:52:07

    Jeannie

    thanks for sharing and that who scene is totally not cool and becoming more and more common!

    2nd wave of AUDISM and ORALISM – breaking up families and shipwrecking children. not cool

    peace

    patti

  3. Sheri F
    Sep 24, 2012 @ 21:28:32

    Bravo Patti. Now, for the solutions…? Create our own “war against the weak”?

  4. PopeMistress
    Sep 28, 2012 @ 10:52:28

    Sheri F- good question!

    Since after George Veditz withdraw NAD , there are more separating Deaf community due to the Depression Years after World War 2. ASL becomes fading and got rescue ASL back from Stokoe. I don’t know the history so very well because I have been busy focus on my work schedule and trying to get the days but not working on night shift hours by Nov. sheesh got a letter yesterday to let me know that I have to start working night shift hours on Nov 2

    I don’t know I may survive to work night shift which that was why I need to spend more time with my family than depending on friends on my limit vacation with paid in 2012. Most Deaf do not understand that I have so much limited vacation with paid while I do not have close family bonding in most of my orally education life. That was my last minutes of choice to choose vacation with family than join friends or group before my vacation leave with paid ran out.

    Now AG Bell got some team help to EHDI Act was made in 2007 by the ASHA lobbists on the US Congress floor before Obama become president on January 20, 2009 : http://nc.agbell.org/page.aspx?pid=567

    (I think it was Bush signed on EHDI Act in 2008 but but but I’m NOT for sure ???) The EHDI Act of 2007, which passed unanimously by the House of Representatives last April, has been languishing in the Senate Health, Education, Labor and Pensions Committee since then. When the U.S. Senate reconvenes in mid-November it will be the last chance to reauthorize EHDI in this Congressional session. Now is the time for you to contact your U.S. Senators and urge them to co-sponsor the Early Hearing Detection and Intervention (EHDI) Act of 2007 (S.1069).

    “Reauthorization is critical for families who want an effective, timely diagnosis of their child’s hearing loss in order to obtain appropriate services for their child,” said AG Bell President Jay Wyant. “I hope that every AG Bell member lets his or her senators know that now is not the time to let our nation’s families down.”

    This important legislation would reauthorize EHDI grants to fund statewide programs that screen newborns for hearing loss before they leave the hospital. Additionally, the legislation would expand states’ ability to enroll identified babies in early intervention programs. About one-third of the babies referred from hearing screening programs do not receive diagnostic evaluations by 3 months of age. Furthermore, over half of the infants found to have hearing loss are lost to the system. Continued federal funding is necessary to ensure that state EHDI programs are continued and become fully operational in order to properly link screening programs with diagnosis and early intervention services.

    AG Bell asks that you contact your Senators TODAY and ask them to support the EHDI Act of 2007 (S. 1069). Click here for a sample letter, where you can also add your own personal story, and to send an email to your U.S. Senators. AG Bell thanks the American Speech-Language-Hearing Association for allowing us the use of their Web site’s advocacy tool to contact members of the U.S. Senate.

  5. PopeMistress
    Sep 28, 2012 @ 10:53:10

    again- ok now back to Obama did signed to re-authorized EHDI in 2009. Possibly that gives AG Bell more power to control everything??? I don’t know but I feel something funny inside when I did read “AG Bell did declared to “reauthorization” ??? So I happened feel that AG Bell is controlling with too much power as an active member of the Deaf and Hard of Hearing Alliance and its representatives serve on advisory councils such as the Joint Committee on Infant Hearing and the FCC Consumer Advisory Committee on this link: http://nc.agbell.org/page.aspx?pid=1159

    did you read that part??? “AG Bell advocates on behalf of its members – professionals, parents of children with hearing loss and adults who are deaf or hard of hearing – on issues related to hearing loss and spoken language education. AG Bell is an active member of the Deaf and Hard of Hearing Alliance and its representatives serve on advisory councils such as the Joint Committee on Infant Hearing and the FCC Consumer Advisory Committee.”

    Learn more about AG Bell’s efforts to keep you informed about current issues:

    Cochlear Implants and Meningitis
    Communications Access
    Disability Rights
    Early Hearing Detection and Intervention
    Educational Advocacy
    Emergency Preparedness
    Employment
    Entertainment Access and Captioning
    Individuals with Disabilities Education Act
    Insurance Coverage

  6. PopeMistress
    Sep 28, 2012 @ 10:53:50

    I’m sorry that I have to bring my thoughts even if you agree or NOT agree with me which is fine with me.. Part 1 of 2: now back to the Medicaid and Health Care Insurance Industry issues——

    anyone of you work for the
    1. Medicare for over age 65/?
    2. or Medicaid for babies over age 1 or over age 1 ½ yrs old up to 3 yrs old (Most States called First Step Program)
    3. or Medicaid for babies up to age 5 yrs old (Most States got stuck with AG Bell stole “Outreach Programs” AG Bell strategy plans to get rid of ASL program out of most State Deaf Institutions.
    4. Or Medicaid for any young children from Middle Class Income under the poverty line
    5. or work for private Health Care Insurance Industry??

    I’m sure many of us the federal and state taxpayers do have concern questions here:

    1. Can people who work for the Medicare, Medicaid and/or Private Health Care Insurance Industry track the numbers of doctors who made errors on cochlear implant surgery by finding out for “re-implant” or having “additional one more cochlear implant” ???

    2. Can people who work for the Medicare, Medicaid and/or Private Health Care Insurance Industry have the tracking numbers of the “LONG OVERDUE speech therapy” coverages???

    a. Most elders have diabetes, arthritis or strokes need to have ASL body exercises – need to set up new jobs for ASL exercisers (not SEE) exerciser study programs in swimming pool inside and outdoors, and land indoor and outdoor especially for “hot flash” menopause people or don’t know how to swim people???

    b. Most Deaf babies will be stuck with the greedy speech therapist to take advantage of the long overdue speech therapy with their possible got stuck with headaches, dizzy or nauseas before the age 3 or 4 got stuck with “language deprivation” ????

    c. Will the hearing parents took advantage of their Deaf child’s SSI in case if they have language deprivation by the audiologists and speech therapist using the Scare Tactic ? There’s an example of Scare Tactic or lies by the orally education on this video link: http://youtu.be/FfIelCOfTbs

  7. PopeMistress
    Sep 28, 2012 @ 10:54:28

    Part 2 of 2: now back to the Medicaid and Health Care Insurance Industry issues——

    anyone of you work for the
    1. Medicare for over age 65/?
    2. or Medicaid for babies over age 1 or over age 1 ½ yrs old up to 3 yrs old (Most States called First Step Program)
    3. or Medicaid for babies up to age 5 yrs old (Most States got stuck with AG Bell stole “Outreach Programs” AG Bell strategy plans to get rid of ASL program out of most State Deaf Institutions.
    4. Or Medicaid for any young children from Middle Class Income under the poverty line
    5. or work for private Health Care Insurance Industry??

    I’m sure many of us the federal and state taxpayers do have concern questions here:

    3. Does the Medicare, Medicaid and/or Private Health Care Insurance Industry have the policy with how many times same patient who failed the cochlear implants before re-implanting???

    4. Does the Medicare, Medicaid and/or Private Health Care Insurance Industry have the policy to stop the long overdue speech therapist before they got stuck with language deprivation or depression from health conflicts????

    5. Does the Medicare, Medicare and/or Private Health Care Insurance Industry have new policy for clients or patients who need ASL for language development before got stuck depression with the language deprivation???

  8. PopeMistress
    Sep 28, 2012 @ 10:56:15

    Sheri F- at last you have very good questions but sometimes i wonder if anyone who can amend the reauthorize EHDI ACT??? Can NAD do that??? I don’t know because I cannot trust the AG Bell is part active member of the Deaf and Hard of Hearing Alliance team and they are greedy representatives to serve on advisory councils such as the Joint Committee on Infant Hearing and the FCC Consumer Advisory Committee which is still NOTHING new that they are stealing telephone network service with high fee costs including taking advantage of phone service tax too!

    ok sorry patti please forgive me for using too long boring comments…

  9. handeyes
    Oct 04, 2012 @ 03:28:25

    Sheri – u mean a book or film – yes that would be VERY IMPORTANT

    Popemistress – yep a racket is going down for sure – do do?

    peace

    patti

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