The Right to Be… Deaf (part I)

heye all –

the UK HFEB, the Stop Eugenics campaign, Edwin Black’s War Against the Weak, The Immortal life of Henrietta Lacks, Connexin 26, cochlear implants + Oralism, mainstreaming, EHDI screening and TRACKING, stem cells, People of the Eye: Deaf Ethnicity and Ancestry, the unjustified shooting of John T. Williams, etc have got me thinking alot about whether or not Deaf folks have the inalienable right to life, liberty and the pursuit of happiness and my conclusion is ….

i’m not sure?  i’m not sure

As Deaf folks in the U.S. of A. and on this wee thing we call the planet EARth – i aint so sure so i thought id examine this question via a series of entries.

so this series may seem a wee bit science ficitonish but what im putting forth are truths and i KNOW how we connect the dots is gonna depend entirely on where we are standing – i.e. “our centers.”  if we r of the mind that to be deaf is a bad thing then what may be coming down the pipe will be a good thing and long awaited with anticipation.  if we r of the mind that to be Deaf is a GRAND thing then what may be coming down the pike will be a bad thing and long feared with an impending sense of doom.

why would i want to examine this with ya all?

i have no bloody idea except for: the truth campaign (soul force / truth force – thank u gandhi for haunting me), quest to make the invisible visible, and i got a big picture frame of mind these days (ohhh and recent PROOF that the weapons of mass destruction were fabricated and knowing over 100,000 have been killed, and billions of bucks spent, and… makes me feel all the more obligated to get TRUTHS out as much as possible cuz time is of the essence and the 2nd waves of Oralism are crashing upon these shores folks.  Time to shore up)

so here we go taking the plunge:

The Right to Be… D E A F  (Part I)

Do we have this right?…. this right to be D E A F?

i’m just asking cuz some days it look like we dont

Lets take a stroll and see see

Suppose i got a big ole Deaf gene – most likely i will have been contacted by someone for my little ole gene pool to get examined and documented and quantified and classified and i will have gotten some GENETIC COUNSELING

i.e. someone will have sat me down to imply or overtly state that more of me would not be a good thing.  “just asking…” they might say to cover their basis.  Do u really want to pass on ur “difference” (this is 2011 and not too many folks still say what they think – which is “affliction” “infirmity” “disease” or “disorder” <unless u r the National Institute of Health – NIH – then u can classify us as a communication disorder)

it happens folks

it is happening folks – get that oar of yours out of the denial river would ya?

(i know i know – waking up is hard to do but… we gotta do it so we can do do – the right thing)

it happens that Deaf folks r routed to genetic counseling and their blood is gathered and analyzed and classified.  One Deaf guy i know who comes from a long line of Deaf folks says he is constantly getting contacted to “participate in a study….” (ie collect samples off of him).  When i asked – “different folks contacting u?  not the same office or study?”  he said, “different, many too many to count.”  I ask “how do they find you?”  he said, “i have no idea but they find me.”

so this makes me think there is a LIST folks

a registry

that is checked off on who has been gotten and documented and who is on the wish list

and i can assure you from my study of eugenics (largely via the Nazi movement) the zest and quest to collect and quantify Deaf folks genes in the U.S. of A. is NOT to make more of us  (i could be wrong – i aint always right.  it could be all this “collecting and tracking” is just good ole science for the sake “knowing” and nothing more or less – however, the signs seem to indicate otherwise and the literature review seems to indicated otherwise too – folks r aiming to annihilate the Deaf gene and there is $$ in patenting genes so u can then control the market on the test and treatment there of – cha ching goes the cash register – there is money in them thar ears before they are even ears – cool?  not)

Not sure?  dont believe me?  just check out that NIH link above and visit the Center for Disease Control re: research and tracking while your at it and the Deafness Research Foundation

i guess it would be ok if all this push for tagging the Deaf gene and wee thing that had it was to actually protect like with endangered species (catch, tag, release back in their natural habitat, protect them from being hunted down and captured, foster ways to help them reproduce to make more, etc) but actually it is often for the opposite purpose (prevention, abortion, termination, alteration, eradication, etc)

now suppose i got a big ole Deaf gene (or the cause of my being Deaf is an unknown) and suppose i want to donate my sperm (if im an XYer) or eggs (if im an XXer) cuz there is money in them thar sperm and eggs too – what am i gonna see on the fertility clinic door?

“no dogs or Deaf donate”

hmmm

this is the pre-baby making road

now suppose i need help getting my eggs and my mate’s or donors sperm to meet up and get happy i.e. IVF and the fertility clinic does a little pre-wash of the little bugger=baby-to-be to see see it is “fit”

and suppose they find its got the Deaf gene – can i use it? can it go in with the other “clean” ones to increase my chances of pregnancy ?- nope, will say most places, nope.  Its gotta be trashed.

but most likely they wont even tell ya – like the Human Resources advise at the coffee shop in the “What would you do?” TV program? – the fertility folks will just deep six the “bad ones” – slip it under the table and into the reject bin of “hazardous waste” so you will never know.

(apparently its only discrimination if you actually say it – not if you do it and no one catches ya.  and in the UK it is mandated by law that a clinic must toss the “defective” ones.)

now suppose i didnt need no help and bingo “i’m with child” and suppose the doctor takes an interest in my ears over my uterus & my human rights.  So i get a lot of “helpful” pressure to do the amniocentesis thingy with the “babe-to-be best-interest-in-mind” – hmmm its really in THE fetus’ best interest to be terminated if its less than “perfect” hmmmmm

wow!?

but supposed i hang tough and me and me partner say – Deaf fetus, cool beans?

or suppose we insist in “being surprised” cuz we dont care if we paint the room blue and the jammies r pink and the ears don’t work.  it matters not to us

what is the next phase in the SYSTEMS THAT BE in communicating – we (society) dont really want ye kind (i.e. Deaf) around here no more?

stay tune for Part II

Summary of Part I – nope the folks-to-b do not have the right to be Deaf

Images from:
http://www.medinik.com/mental-disorders/genetic-testing-for-alzheimers
http://www.thenervousbreakdown.com/blisti/2010/03/the-amazing-persistence-of-sperm/
http://www.nuaz.co.nz/IVF.htm
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36 Comments (+add yours?)

  1. deafa
    Feb 19, 2011 @ 15:24:47

    I always felt if people have the right to weed out deaf in ivf, then deaf have the right to weed out hearing genes. But really,it is not like they are genetically engineering (turning a hearing gene into a deaf gene ) they are simply increasing their odds of the gene that already exist. Yet doctors dont mind using “average” gene when a intelligent gene is right there available for them to use. Anyway, I once read they dont screen for deafness. And I read opinions about how some people are concern that deaf people will use pregancy screening to abort if the child is not deaf so doctors dont always do pregnancy screening for deaf and one woman was very upset about giving a birth to a genetically deaf child and no one screened for it. She took it to court. I wish i knew where the article is at because it was a couple years ago (or less)

    Personally, I dont care if my child is hearing or deaf as long he is healthy. If I have ivf, I hope they will pick a healthy deaf gene than a hearing gene who will die within a few years. I do have a deaf gene as my older sister is deaf and a few other members are deaf since birth too.

    March of dime refer it as birth defect.

  2. Dianrez
    Feb 19, 2011 @ 15:50:05

    It is in the Hearing attitude of fear: anything different from the accustomed, and especially anything to do with a strange lifestyle or language. Perhaps it is self-identificaion: what if I were….? Or what if I had to meet one…?

    It could be a matter of public education from the cradle onwards…exposing Hearing society to Deaf babies, children, teens, and adults on an everyday basis until they become accepting of differences in hearing.

    (This gets too close to mainstreaming in education, however, and exposes them first-hand to the difficulties of being a minority in the mainstream. Not good exposure. There are better ways.)

    Structuring society physically and socially to accommodate Deaf differences might work better. Captioning, universally understood basic signs, symbols, visual cues, handy information in little brochures, signs such as “ASL spoken here” and “We Welcome Deaf”

    In many situations, structuring to be Deaf-friendly also turns out to be friendly to foreigners, autistic people, elderly and the very young. Overall, this reminds people that Deaf people exist among themselves and makes them less invisible.

    Exploring ways that Deaf people are active participants in society and spotlighting them could be useful. We all know how eagerly car salesmen, realtors and others pursue Deaf people…the Deaf dollar is indeed attractive. There are jobs where Deaf people excel such as noisy environments, jobs with no telephones or interruptions, and jobs requiring high visual vigilance.

    There is a lot of misinformation being promoted such as hearing being essential to life and speech skills being key to success. This tends to form a prejudical mindset that further disables Deaf people. Promoting and exposing people who contradict such mindsets would be effective.

    Every time a miracle breakthrough is announced in hearing and speech, Deaf people can campaign to expose their shortcomings as well. Each breakthrough has its variable rate of success and its great committment to working hard to make it work. This goes a long way to defeat the mindset that deafness is curable.

    Thanks, Patti, for making people think.

  3. Karen Mayes
    Feb 19, 2011 @ 18:21:34

    No matter how advanced genetic engineering would be, how many accomplishments, etc., the Deaf (and other DIFFERENTLY–not superiorly nor inferiorly- abled) gene will ALWAYS pop up. The differences are the species’ challenges to adapt and to survive. However, for some reasons, the word alone “differences” carries a lot of weight of fear and we don’t like feeling fear, so we try to control it through means… hiding, fixing, eliminating, etc.

    Good blog.

  4. Don G.
    Feb 19, 2011 @ 19:08:14

    Edwin Black talks about some of the same things in his “War against the Weak”.

  5. Joseph Pietro Riolo
    Feb 19, 2011 @ 23:13:15

    I am wondering if you can do the same arguments for any other differences such as blind, dwarf, Down’s syndrome and autism (assuming that autism is mostly caused by genes rather than environment). Can you really argue that one has the right to be born blind or dwarf or to have Down’s syndrome or autism?

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  6. Karen Mayes
    Feb 19, 2011 @ 23:55:12

    Hmm… yeah, Joseph. Recessive genes vs dominant genes… I don’t know, hm.

  7. Dianrez
    Feb 20, 2011 @ 01:07:34

    It’s pointless to argue whether or not a certain disabled individual has a right to be born. WE SIMPLY DON’T KNOW THE POTENTIAL OF ANY PARTICULAR EMBRYO OR FETUS.

    The current trend of aborting Downs’syndrome babies is ethically disturbing especially in view of many Downs’ individuals performing useful tasks in the workplace, not to speak of their personal contributions to human society.

    To carry this into theoretical abortion of identified Deaf embryos is not a useful discussion because of countless contributions of Deaf adults.

    However, people apparently want to bring this up to illustrate where we may be heading in the future, based on past history.

    Simply put, such discussions need to be stopped. Period.

    No arguments either way, pro or con, because of the ethical implications of destroying human life without considering its ramifications. It is simply not to be considered, like discussing making murder legal to eliminate certain individuals, races, ethnicities or abilities.

    Already with abortion rights currently being practiced, we are losing potential Einsteins or future world leaders or future generations of unknown potential.

    With that consideration out of mind, we can better address the rights of people today and how they can be accommodated and contributing to society when allowed to. We don’t need people thinking in the back of their heads, “he shouldn’t have been born” but be appreciative of the efforts of everyone around us.

  8. handeyes
    Feb 20, 2011 @ 01:24:43

    deafa –

    there are various ways they PREVENT Deaf genes from continuing on, eh?

    they generally dont accept donations from eggs and sperms from Deaf donors – i imagine a person could work to prove that they BECAME deaf later from an illness or something but no matter – most fertility clinics will not TOUCH the stuff

    i know of one fertility clinic that would not treat a blind woman because they said she could not care for her child (not a genetic fear thing but those types of ableism attitudes are every where and just plain ole stupid)

    i had a Deaf friend who’s own lawyer in a custody case told her that the Hearing child should go with her ex-husband because he was Hearing

    WTH

    and im paying u for that counsel – hmmmm

    oh and he also violated her right to an interpreter by making her partially Deaf sister who came along as a source of support “interpret” for their meeting

    sister ended up getting very emotional cuz she was learning for the first time some of the abuse her Deaf sister had endured

    audism and ableism suck – bit time

    eugenics too – me no like

    i had blogged a long while back re: the british bill (now law) that said “defective genes” had to be tossed

    https://handeyes.wordpress.com/2007/12/28/hfeb-heads-humanity-towards-a-black-hole/

    IVF doesnt generally require that the gamete be washed pre-implantation but if it is and its found that the little darling to be is less than perfect – by law in the UK it must be tossed

    peace

    patti

  9. handeyes
    Feb 20, 2011 @ 01:34:23

    Dianrez –
    thanks for all that u wrote. really appreciate it.
    Re: showing the world what we have to offer – Deaf folks have been offering to do that forever and forever more. Thankfully we now have some tools at our disposal to do that a bit more effectively and to get it out to the general public more easily.

    media – im loving some of the films and short PR type videos Deaf folks are developmenting. it is the beginning folks and very much needed.

    All oppressed groups have labored intensively to prove their worthiness and worthwhileness – often for NAUGHT

    it should never be in question in the first place – for any human being. it is not for us to judge who is fit or unfit to live and what life is more valuable than another. i would take someone who has been in recovery over alcoholism for 20+ years and simply lives a simple and good life over some of the most notable folks u can think of. i would take them in a heart beat but im unsure of what “society” would do –
    Donald trump vs. joe smoe
    Britney spears vs. patti durr (i know i know some of ya would toss me quick as a lick smile)
    hitler vs. gandhi

    can folks not see how inane and unjust this is – to even be judging, weighing, valuing one life over another

    no thanks folks

    no brave new world for me

    we have a fundamental truth – all folks are created equal

    there is no conditional love affixed to that principle – well as long as they are born white, or wealthy, or male, or straight, or hearing or….

    nope – ALL folks – all

    peace

    patti

  10. handeyes
    Feb 20, 2011 @ 01:37:09

    karen –

    yes i believe u r right. as long as humans r still walking on this planet – mother nature and the maker r gonna keep allowing various Deaf genes to pop up – who knows more might come down the road as a result of other “fixing” procedures etc

    the new book by Lane et al – People of the Eye: Deaf Ethnicity and Ancestry is really enlightening and inspiring

    and since when do folks in the 21 century go around trying to stop folks from being recreated or born because of their ethnicity or race – or gene – hmmmm

    eugenics – not cool

    peace

    patti

  11. handeyes
    Feb 20, 2011 @ 01:43:14

    Don

    yes watching some of Edwin Black discussion of his book War Against the Weak for the Deafhood Foundation really got me thinking about how these things get carried out

    http://www.waragainsttheweak.com/

    my entry does touch upon sterilization – another method of preventing a Deaf life from being born but this article might be of interest

    Deaf-blind couple in Canada – woman was sterilized as a child at the request of her mother
    http://www.thestar.com/news/crime/article/938209–deaf-blind-couple-can-feel-the-love

    Biesold’s book Crying Hands: Eugenics and Deaf People in Nazi Germany – is an outstanding book re: the forced sterilization of 17,ooo Deaf folks (~300,000 disabled folks)
    http://books.google.com/books?id=MPAzWtoHBBYC&printsec=frontcover&dq=crying+hands+biesold&source=bl&ots=VDpuEhLTmQ&sig=sT6iGu3H6LKBKDftaH93S3iIPW4&hl=en&ei=cnFgTbTaIcSt8AblwOzICw&sa=X&oi=book_result&ct=result&resnum=1&ved=0CBMQ6AEwAA#v=onepage&q&f=false

    eugenics (positive or negative – not cool)

    peace

    patti

  12. handeyes
    Feb 20, 2011 @ 01:47:43

    Joseph –

    not sure who you are addressing ur question to but since u dont specify anyone – i assume (which can be dangerous) u r asking me?

    if so – here i go with my reply. You wrote:
    “Can you really argue that one has the right to be born blind or dwarf or to have Down’s syndrome or autism?”

    Can you, Joseph, argue that they does NOT have the right to be born?

    peace,

    patti

  13. handeyes
    Feb 20, 2011 @ 01:51:58

    Dianrez –

    I am standing up and clapping.

    Seriously.

    Thank u for singing that tune.

    this here is not the aryan nation folks

    bio-diversity and human diversity

    keep “weeding” folks out and we r gonna self-destruct

    we aint dalmatian dogs (and i got a mighty problem with that too)

    dont send us down that black hole folks

    a person’s a person no matter how small

    (note here i am not talking about whether or not a woman has the right to control her own body – i support the right to choose even though i would not choose to abort for whatever reason but the RIGHT was there for the woman and her body not because the fetus was less than shiney or of the wrong gender or ….)

    peace

    patti

  14. Joseph Pietro Riolo
    Feb 20, 2011 @ 02:07:31

    I read what Dianrez wrote. I admit that I was taken aback but that is okay. It is a warning sign that I should go back to the lurking mode.

    I was going to lurk but just saw the question posed by Ms. Patti Durr. My answer to your question is that the fetus does not have its own rights to be born. It should be given every opportunity to be born but ultimately, its fate resides in its mother’s decision.

    Farewell for now.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  15. Dianrez
    Feb 20, 2011 @ 03:41:25

    Oh, JPR, I appreciated what you wrote re. theoretically considering what people might do, even though I jumped on it.

    It’s debatable, however, if that would have worked to stop eugenics being carried out in the past. Whatever we discuss, we should build in safeguards that it doesn’t happen again, or the mindset that led to it doesn’t develop again.

  16. deafa
    Feb 20, 2011 @ 07:11:24

    Btw, this happened to me. When I was pregnant with our son, my blood test showed a high risk of down syndrome. They asked if I wanted to do anmio and I told them no because I dont want to take the risk and didnt see the point of it. I am keeping the child no matter what. I told them that I will do the 3-ds sonogram (sp?) And other testing that would let me know what chances of down syndrome, so the doctor sent me to a genetic counseling and ask her what are my chances of down syndrome (apparently she couldnt say as i didnt do the anmio) but she did keep asking about my deaf history. I was sort of surprised because I came to find out about down syndrome and not aboit my child’s chances of being deaf. This is where I found out that both of my parents were carriers. But still it was totally unexpected for her to focus on my ear. I didnt even talk about deaf or express my concerns about it (other than let them know I cant hear well for.communicate issues).

    Anyway, It turned out our son does not have down syndrome. He doesnt even have any development delay and he is quite intelligent. It was one of those false positive

  17. handeyes
    Feb 20, 2011 @ 11:41:38

    Joseph –

    thank u for answering my question. Ultimately the choice is supposed to lay with the womb bearer (ie the woman) however if we r talking IVF screening etc then its often in the hands of the clinic or legislators or doctors etc

    if we r talking about once its in the womb – there is a mighty slew of pressure from the “professionals” to repeatedly offer us choices re: the babe-to-be. deafa’s comment above bears a bit of testimony to this fact and ill add my experiences below in response to hers

    there is PRESSURE big time to the women not to carry defective offsprings

    there is pressure to both parents not to be joyous over the potential that the potential-offspring might be Deaf or a little person (i dont think the term “dwarf” is used much these days) or REDHEADED ; ) (thankfully gingerism has not hit a eugenics peak)

    so truly the fate of the babe-to-be doesnt really reside with the mother’s decision

    however the parameters of abortion rights are set around that principle – that the fetus can not live independently of the mother’s womb so therefore, it is the mother’s property to do with as she sees fit

    that is the principle of the law

    however because abortion rights are such a hotly contested issue we see many places will not perform abortions for fear of their doctors being shot, protestors outside their door, and cut to funding sources

    Didnt the GOP dominated house of representatives just vote yesterday to cut all funding to planned parenthood?

    if it passes – then GREAT (not) we wont have affordable and safe PREVENTION for pregnancies (which i greatly prefer over the other options – knocked up at 14 or end)

    Reproductive rights – wow they r a huge area to discuss

    i want to thank everyone here for broaching this thorny topic

    usually VERY HARD to have a civil chat about abortion

    so we return to the question of:
    while it may be the right of a woman to abort a fetus if she finds out it is Deaf – is it the right thing to do?

    i would say NOPE

    i would say the same for other non-life threatening “conditions”

    and not just cuz sometimes there are false positives but just cuz – a life is a terrible thing to waste

    and love comes in all shapes, sizes, dBs, IQs, colors etc

    peace

    patti

  18. handeyes
    Feb 20, 2011 @ 11:43:34

    Dianrez –

    re: safeguards – yep that is important. its interesting that the HFEB of the UK put in safe guards to guard society against someone potentially preferring a “defective” deaf gene over “normal ones” but they didnt put in safe guards against someone rejecting deaf genes

    peace

    patti

  19. handeyes
    Feb 20, 2011 @ 12:10:15

    deafa –

    yep i got that pressure for an amino – so i could have “options” and im like NO THANKS

    yep i got a false positive from a sonogram for hydrocephalus. i had been PRESSURED into getting an additional sonogram – i generally dont want or need them with pregnancies – i worry about the affect on the wee thing just cuz of our curiosity or desire to see what is already there. but pressured cuz “just to check, just to make sure everything is alright…” i said supposed something ain’t right – what can u do about it at 5 mo.?
    “well some things can be done to aid the babe-to-be in utero” fuck – guilt me

    sure ok i say hit me with another sonogram and when the technician starts sweating and zooming in again and again on the brain (as if it were a bomb factory in Iraq) – i ask “what do u keep enlarging and grabbing stills of”

    she says – ohhh its nothing then bolts for the door

    in comes the radiologist who is so proud to be able to FINGERSPELL – she is overjoyed that she can use this skill that she learned in girl scouts to tell me:
    “H Y D R O C E P H A L U S”
    to which i ask “water on the brain” and she smiles and signs “yes”

    wow bilingualism in rochester rocks – nah – not always.

    so i run to the tty in the lobby to call S (rare he wasnt with me for a prenatal visit but our 2 was home sick so so was he)

    They kept zooming in on the brain and say the baby might have hydrocephalus. they scheduled a follow up with the oby/gyn GA

    (short pause then)

    It just means our baby has a very smart brain. GA

    I’m freaked out. GA

    I know. Come home GA

    and so he spends the weeks before the more intense sonogram reading up on hydrocephalus and even contacting some local parents who have had children with hydrocephalus so we can figure out how to be the best parents possible. he does all this silently as to not to worry me

    and i just spend the time kicking myself in the butt for having doing that stupid sonogram

    and then when we go to the specialist for the sonogram that is a wee bit invasive but renders a better image – this technicians says “i normally dont say anything but you have nothing to worry about. ill get the doctor to come and confirm”

    in comes the doctor “i wont belate good news. the baby is fine”

    sighs of relief and some tears

    WTH

    false positives – he

    nothing positive about that

    deafa – re: the focus on your EARS when u went to discuss down syndrome

    i have another story if u care to hear. with the same child as above – N – after he was born and up in NICU (due to jaundice and anemia – he came a few weeks early)

    i was readmitted to the hospital due to spiking fevers

    emergency room doctor takes an interest in my ears when he sees S interpreting for me – prior to him noticing that he was actually on task – re: the fever and my just having had a baby come out of my vagina.

    but once he saw the signing and heard the lisp, he took an interest in my all precious commodity – my ears?

    how long had i had a hearing loss
    how did i learn to speak so well
    so could i lipread
    was it congenital
    what was the cause of it

    to the point that i finally had to say “doctor – i just gave birth to a baby, who came out of my vagina and not my ears. do you mind shifting your focus?”

    to which he quickly found a reason to leave the room and S looked at me and just shook his head back and forth

    (Note: S has a habit of saying – “im not as bad as i look and Patti is not as sweet as she looks”) this may have been one of those moments – i know not – i just know it was 2 am and we had one child at home that a friend had to rush over to stay at our house for, we had a wee thing up in NICU and i was spiking fevers and none of any of this had to do with my EARS

    after much ado and me almost going AMA – it was determined i had a uterean blood clot of which some folks die from soo…..

    another story:

    i bring N back to the NICU after he is 1 years old – this is what the nurses had asked – to see him all healthy and fine. (he had another health problem urinary track reflux but other was was a very healthy and happy babe) so in we walk through the double doors – they remember us due to our double redheads and goo and gaa over the adorable tyke but one nurse is disturbed
    upset
    she asks “is he alright” i say “yes (wondering if she knows we were just down 3 floors for the urinary track reflux thing)
    she asks “is he normal” i say “yes he is fine. well he has this reflux thing but….”
    she says “i mean CAN HE HEAR”
    me – wow, wow WTH
    all the other nurses r quiet – holding their breath
    me say “yes he is HEARING”
    she says “thank GOD” and storms off

    this is one of the ways i know my kind aint wanted

    but seriously this nurses loss and perhaps our paths crossed because some day a Deaf person might become an intimate of hers – a child of her own, a neice, a grand child, a neighbor, a lover, a dog,

    and some day she will learn – we dont bite, we dont weigh down the gene pool, we dont diminish the country, we dont deplete the human diversity

    we live, we love, we grow, we have a right to be….

    peace

    patti

  20. Dianrez
    Feb 20, 2011 @ 18:23:48

    I wonder if Patti’s and Deafa’s experiences are more common than we realize.

    I, too, had my experiences. My first time, in going for pregnancy health screening blood tests, the technician made a face and said, “Were you born deaf?” I said yes. “Do you know your baby might be deaf, too?” I replied with a smile, it doesn’t matter. She sighed, or was it more of a huff? and said “you can go now” putting down her filled tubes and needles with a clatter.

    I refused amniocentesis with that pregnancy, determined to take what came. However, with a twin pregnancy five years later, the pressure was more intense. “There might be problems we can help with.” Having a double amniocentesis wasn’t something to look forward to, so I asked more questions. Like what? What if? What would you do? “It is possible we could reduce the pregnancy to one if the other were defective, so that the one might be healthier.”

    Such is the focus of health professionals. Health, healthy and more healthy, even accepting the prospect of exterminating what might not be. The amnio results came back: both twins were genetically healthy.

    Well, back then tests for deaf genes did not exist, not that it mattered. The twins were born six weeks early, and two days later the incubator room nurse came in and said abruptly, “Your girl passed. The boy did not pass.” and left the room.

    It took some asking around to find that she was referring to their hearing tests. There was a big deal about “going to an audiologist for more testing” and building up a hope “the neonatal test may not be accurate and your boy may be hearing after all or even not, there is a lot to help him hear.”

    One audiologist even told me “Sometimes deaf babies become hearing after a while.” Maybe that was true, but the cheery, hopeful encouragement told me that everybody else was pulling for that possibility that he might not be deaf like me or my husband.

    Sorry, folks, Son is deaf and Daughters are hearing.

    23 years later, all three kids are on their own and independent and have college educations. I wish these professionals could know that and perhaps adjust their attitudes accordingly.

    However, in our field we know well the shortsightedness of those at the infant end of the spectrum when we stand at the opposite end of childhood and know the end results.

  21. handeyes
    Feb 20, 2011 @ 20:42:37

    Dianrez –

    thanks for sharing ur true story. your kids are all grand. Im sure having a Deaf and a Hearing twin you could see a great deal of differences in how folks responded to them.

    next issue in this series will be about the “failing of the hearing” test etc

    one Deaf father shared how they were BILLED for the test when he didnt even want it done HA EHDI!

    all his kids were Hearing as is his wife. He also shared that at the prenatal visit with the third pregnancy the doctor was inquiring about the potential that the fetus was Deaf via the husband’s genes and maybe an abortion… – and so the Hearing wife said “Do you know how incredibly insulting you are being right now?” or something to that effect

    Several Deaf moms had shared with me their experiences right after the birth of their child where it was all shadows and doom and gloom by the hospital staff – “what if the baby is Deaf like u – ewwwww” crap

    and the test and the failing

    Ive also seen several moms say they were immediately given brochures and stuff PRESSURING them to get the child fixed as quick as possible (CI stuff) right there on the maternity floor -should be the happiest day of their lives – instead its a slap in the face of “Oh no – not another one like you”

    Re: shortsightedness – yep a wee bit, eh?

    Once Dr. Paddy Ladd had given a little talk at Dr. Simone’s breakfast thing – about being People of the Eye and why its good to be Deaf and language and human rights and diversity is dandy etc and then during Q and A – a woman shared how distraught she was that her hard of hearing daughter-in-law had passed on this “handicap” to her grandchild etc and Paddy responded something nicely but firmly in defense of the fact that it might not be the curse the woman was making it out to be.

    And then Dr. Simone (who is of Italian heritage and had been remarking quite a bit about how he could see Deaf as a culture similar to his Italian background) said to the woman – “well, look here we have Dr. Ladd and he has a PhD. he is an accomplished author, professor, scholar, he comes to us from England…. your grandchild could grow up to be someone as great as he is. He doesnt have to be a person of the ear – Dr. Ladd has just been telling us how good it is to be a person of the eye and I agree with him” (something to this effect – it was many moons ago so im just going by memory)

    but there it is – a person can sing their whole song out to u and some folks are not gonna see past your ears

    and as u questioned earlier Dianrez – is it cuz they fear it could happen to them or one of their loved ones?

    seems so – at least an astute playwright speculated that was the reason that some directors preferred to cast Hearing actors in Deaf roles – not so much for convenience or talent but because the audience likes to be comforted by the fact that the person is “just acting” and “its not real and look at how talented they are” and “it wont ever happen to you” – it gives folks distance and protection

    so yeah maybe folks now know it aint contagious but they still certainly act like it is a plague (upon our houses), eh?

    peace

    patti

  22. deafa
    Feb 20, 2011 @ 21:10:44

    Yeah, my mil was afraid of deaf grandchildren too and told my husband when we were dating not to get me pregnant because we could have deaf kids.

    Thought you might be interested in reading this. I just shared it to someone about AGBell: http://www.uic.edu/depts/idhd/DSGermany/home/specific_location_page/bernberg_halle_july_11-13/transcripts/july12transcripts.htm

  23. handeyes
    Feb 23, 2011 @ 04:46:47

    deafa

    thanks for this link

    do u know what year this took place and who participated?

    it is interesting to read the remarks

    thanks again

    peace

    patti

  24. handeyes
    Feb 23, 2011 @ 04:48:55

    also if folks r interested in Nazi Eugenics during WW2 that focused on Deaf folks – they can see pp and some primary documents at this link

    http://idea2.main.ad.rit.edu/paddhd/deafww2/main/DEAFPEOPLE/DeafEuropeansHolocaust/Eugenics.htm

    much of the materials is based on Biesold’s book – Crying Hands

    Biesold was a grand ally to Deaf folks – sadly died too early from cancer

    peace,

    patti

  25. Dianrez
    Feb 23, 2011 @ 06:07:12

    Patti, the link you just gave has most pages “permission denied” which is too bad as I really wanted to read them. Maybe you could have the webmaster reset the permissions?

  26. handeyes
    Feb 23, 2011 @ 12:15:45

    heye dianrez

    thanks for letting me know. the link is working fine for me via firefox. maybe try i different webbrowser? or try copy and pasting that link up above

    but ill walk u to the place too here – go to:
    http://www.rit.edu/deafww2

    then click –
    Deaf People /
    Deaf Europeans + Holocaust /
    Eugenics

    once on the Eugenics page (this is what i tried to give u the direct link for up above) u can click all those right side live links

    pls do let me know if u have any other problems with the site

    if u r interested in the topic of Nazi eugenics targeting Deaf folks – Horst Biesold’s Crying Hands is a must read. He also covers Deaf Jewish people’s experience a tiny bit.

    Schuchman and Ryan (editors) book Deaf People in Hitlers also has several important articles on the subject (more general to various disabled groups and Eugenics)

    in the same website above in the Deaf Europeans + Holocaust section u will see
    RECOMMENDED READINGS – click that for the two books above (some excerpts online via Gally) and also some articles

    The SURVIVORS section of this website – has lots of good testimony. Some of Non-Jewish folks who experienced sterilization (and abortion for one) and many more of Deaf Jewish survivors of the shoah

    VIDEO section has these testimonies also

    peace

    patti

  27. handeyes
    Feb 23, 2011 @ 12:19:18

    oh also i have three vlogs up from long ago
    re: social darwinism & Eugenics discussing the Nazis to contemporary times (at that time HFEB)

    the vlogging is not great – too dark (i got a comment once “wish i was a bat so i could understand you) smile but it is viewable and tolerable for those with interest and patience smile

    https://handeyes.wordpress.com/2009/10/26/to-be-or-not-to-be-social-darwinism-and-eugenics/

    peace

    patti

  28. Dianrez
    Feb 23, 2011 @ 15:01:04

    Thanks for the links, they worked most of the time. The videos do not display well (must be the monitor’s brightness limitations)so I hope at some time in the future they can be transcribed and/or redone in better lighting.

    It is sobering to review the eugenics and where they led to in the past especially in light of today’s discussions about selective abortion, genetic selection and current medical priorities.

    Even children with disabilities so severe that they require 24/7 nursing care have their own contributions. Some might think, better they not be born, but it would be wrong to think they contribute nothing…we learn a lot about love, social interaction, medicine, physical function, neurological and psychological development and learning from these people. And we learn about prevention and cure, too.

    Getting back to deaf people, the potential of our contribution to society is there, too. Our lifestyles and adaptations offer much to learn from, our language, visual and analytic way of thinking is both useful and instructive.

    Much of it still unexplored.

    Whether or not it is submerged or destroyed by attempts to make us hearing is debatable. There is strong evidence that as a people we have a place in the world and are part of its progression into the future.

    Soon the people of the Holocaust will be gone and the fogs of history will minimize the terrible facts. Those that I knew are getting old: the German couple who showed me pictures of when they were members of the Deaf Hitler Youth; the Jews with faded and distorted numbers on their arm that peeked out from long sleeves even in the summertime; even the one annoying young man who wore black leather and swastikas who found the Shoah tales too terrible to believe; so he denies them as “lies”.

    Eugenics is still alive and the medical personnel we all just discussed here are still AT IT. The lack of understanding of the nature of “health” is apparent in their ignorant communications quoted here. We have a long way to go.

  29. deafa
    Feb 23, 2011 @ 15:35:45

    I believe it was 2004 . The whole website seem like it was created in 2004

  30. deafa
    Feb 23, 2011 @ 15:38:46

    I believe it was 2004 . The whole website seem like it was created in 2004. The rest, not sure but they did provide the name,college name, phone number, and email at the bottom of the transcript.you will have to contact that person about it .

  31. handeyes
    Feb 24, 2011 @ 03:00:21

    Dianrez – ohhhh wont ya lift some of ur comments and put them up as blog entries?

    they are golden and while this thread is still getting lots of visits – ur stuff should have more prominence

    pretty please consider it

    re: what Deaf folks have to offer the world – well that is pretty much what Paddy Ladd puts forth in the book Understanding Deaf Culture: In Search of Deafhood

    re: neo-eugenics – yep it alive and well

    peace

    patti

  32. handeyes
    Feb 24, 2011 @ 03:00:57

    deafa – many thanks. ill try to make time soon to read it over carefully and track it back etc

    thank u again for sharing the link

    peace

    patti

  33. Trackback: Part II: The Right to Be… Deaf « PEOPLE OF THE EYE -…first, last, and all the time” – g. veditz 1910
  34. Trackback: The Right to Be… Deaf – Part III « PEOPLE OF THE EYE -…first, last, and all the time” – g. veditz 1910
  35. Trackback: The Right to be… Deaf – Part IV « PEOPLE OF THE EYE -…first, last, and all the time” – g. veditz 1910
  36. Michele Westfall Ketcham
    Apr 17, 2011 @ 22:27:00

    When I was pregnant with my first baby, the hospital told me I had to take genetic counseling. The genetic counselor told me I had between 50% to 100% chance of having a Deaf baby. Of course this was before my ex and I knew we really had a Deaf gene in our DNAs, and at the time we thought the genetic counselor was wrong because I was the only Deaf person in my family and my ex only had three distant Deaf cousins. We didn’t think that was enough to guarantee a Deaf baby with stats like that.

    Mind you, to her credit, she didn’t say it was bad for us to have Deaf children or anything like that. She was totally neutral and presented her analysis based on our family histories, and didn’t try to discourage us from having our baby.

    After our son was born, we went ahead and signed up with Gallaudet Biology/Genetic dept to get our DNAs analyzed. That was when we both found out we had connexin-26 gene.

    And we haven’t been bothered by anybody wanting our blood. Guess we’re not threatening enough (even though Gallaudet told us that our Deaf genes guaranteed us of always having Deaf babies no matter how many times we decide to get pregnant).

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