The Right to Be… Deaf – Part III

NOTE: this is a bit of a series examining if we have the right to be… Deaf.

To see Part I go to:

https://handeyes.wordpress.com/2011/02/19/the-right-to-be-deaf-part-i/

To see Part II go to:

https://handeyes.wordpress.com/2011/02/25/part-ii-the-right-to-be-deaf/

NOTE: This comment section has several Deaf adults sharing their experiences with the SYSTEM re: the testing of their newborns and infants (important stuff)

Part III – The Right to Be… Deaf

i.e. Not the Parting of the Red Sea

So suppose we, THE PARENTS, agree IN THE BEST INTEREST of our baby for follow up visits to the audiologist cuz they keep calling and insisting – then what are we greeted with?

– oh didnt u know the test requires SEDATION

pardon me?

excuse me?

didn’t quite get that

could u run that past me again?

You have to tranquilize my BABY for an audiology test

[We interrupt this broadcast before we even barely got started to… NOTE: this is brand new news to me folks – i NEVER knew this was a common practice until a few mo. ago when chatting with a group of Deaf mothers – all of whom said – yep they did that to my baby or they wanted to do that with my baby but i fought it)

WOW

WOWIE

and from what i understand the sedition is not a necessity for the test, it is just for the convenience of the tester

holy crud

where is batman when u need him

geez id even take batgirl at a time like this “HELP YELP” get me out of this twisted flick would ya.  We now return you to our regularly scheduled program.  Enjoy]

so suppose we survive this latest gauntlet in the chain of audism with me heart outside my body as i watch my baby come out from under the DRUGS (yes they drugged my baby unnecessarily) and out from under the lights and the wires and the labels for me to start to chant the gospel of “its for your own good my little one.  its just cuz mommy / daddy love u so much.  i sorry im splattering u with all my tear drops, little darling but again its for your own good.”

wow – that audism is rubbing off on even me – me who has survived it, me who already perpetrates it via my own system of privileges and now me as a MOM trying to do right by my wee thing while surrounded by folks in white coats

WHITE coats folks

now imagine what this trip to the steely cold vault is like for the Hearing parents?  wow, for the naive uninitiated folks.  it is too hard for me to imagine.  takes really special and strong folks who know that babes r blessing no matter what shape of form they come it to be able to withstand the PRESSURES of those first visits. The pressure to CONFORM the “deformed” into the “norm”

so suppose as we anxiously await the VERDICT [failure or future / death or deaf or h/earing], we hope “Deaf”cuz wouldnt that be cool but we simultaneously FEAR Deaf cuz wouldnt that be a #itch for the little darling who never did nothing to nobody except – be BORN by us (“the defective” the narrator adds while the spooky music plays in the background)

and we get the news – it is delivered to us with concerned looks, wringing of hands, and glossy pamphlets, DVDs, and display models of what CAN be DONE to overcome what IS

yes, instead of another basket of goodies and words of congratulations on your wee things Deafhood, we are whacked on the head with ….. the A word folks.  And no it is not spelled with a “v” (ask the NAD they know how to spell it correctly)

we see the news and we sigh – just what we wanted “A healthy baby and we knew s/he was healthy all along” – healthy for us means Deaf or Hearing –  y nada mas importa

but wait despite our joy and relief – they “the specialists” are still frowning – they is VERY worried now

they start selling their wares – they start tooting the scope of their practice

and we say “but…”

and they say “BUT…”

and their but beats our butts

boo

and so we start to investigate the highest end digital hearing aids IN THE BEST INTEREST OF THE BABE – we will call her/him Pat

We investigate this cuz to do otherwise would look like neglect and abuse and selfishness – they tell us and cuz we LOVE our Pat and we know it is a Hearing world out there afteral and we know AUDISM SUCKS

it SUCKS big time & #UCKS up folks big time too sooooo a wittle bit of privilege might help our wittle bitty pat “succeed in life” so hence we commence to strap her/him up

and an odd thing happens while we give wittle pat-patty-cakes & bakers-man-a-home – while we hug, hold, love, teach, play, sign sign sign, point, read, show and LOVE little Pat home – on the way through the audism maze to get the highest end digital hearing aid – even though the specialists kept saying Pat qualifies for bilaterial implants and the DIGITAL CLOCK is ticking away in Pat’s wee brain and loosing out and missing out on precious sounds and language (meaning spoken/heard variety not the signed/seen kind) – we dont opt for that option cuz well they are IMPLANTS – they aint so easy to take into the shop for repairs and cuz we really LOVE Pat as a Deaf baby and for who s/he is &…

you already doomed and gloomed her/him before s/he was even done baked and once s/he come out u “failed” her/him and then u drugged her/him so we r kinda sensing a pattern and s/he is only SIX MONTH old

6

6

and s/he is gobbling up the sign language – the language of the people of the eye & just as folks can learn to sign later in life we know folks can learn to speak or hear later in life so…. no hurries and worries on all that digital clock b.s. shreiking

its a fully natural and accessible language that counts and our Pat has it even though we didnt get it until we were 7 or 8 or 20

so just CHILL on the doom and gloom crap would ya “if you don’t mind we’d rather not discuss putting our baby under for surgery because it is not a medical necessity and because sometimes BAD THINGS HAPPEN and we could never live with ourselves if it did so ….”  STFU we silently scream behind our masks of smiling gracious faces at the white coats

but on the way to the high end digital hearing aids a very odd thing happens

in addition to our being torn about going this route – our being worried about having to tape something ONTO our pat’s body, our battling our OWN flashbacks of body aids, cold ear mold casting, sore ears, etc, the insurance company comes back with DENIED

DENIED

WTF and phew at the same time – why is this constantly our feelings when we should be overjoyed to have a HEALTHY BABY

A LOVELY CHILD

MADE IN GOD’s IMAGE just as we were

But “good new” say the specialist – “CIs are 100% covered”

and again we say… “but…” &

HUH? &

WTF!!!!!!!!!

“of course, its up to you, THE PARENTS,” they say

high end digital hearing aids that u have to pay out of pocket for cuz they r “cosmetic” and a “luxury”????

where as the CI are….????? what? not sure

not sure at all except for the fact that they are:

sometimes FAILURES

yes folks, sometimes the CIs fail

the co.s and the parents and the audiologists and the doctors all hope they will fail safely (meaning simply just wont work) vs. fail hot (meaning spark, sputter, shock, OUCH)

BUT sometimes they do fail badly and loudly (from Advanced Bionics press release of their latest Sonova Advanced Bionics 90K Hi-Res cochlear implant “These recipients experienced severe pain, overly loud sounds and/or shocking sensations”)

But you will be given assurance that was only a FEW cases but u, being good parents, who TRULY do want what is best for little Pat will poke around a bit on your own instead of calling the number on the glossy brochure or joining the online chatrooms where everything is rose – you will investigate and

-see there have been MANY recalls of various CIs and there have even been some lawsuits due to kickbacks with audiologists and doctors for promoting a certain co. brand of CIs and fraud by over pricing and over charging for CIs and forcing medicad and medicare to cover,

– see that there are alot of lobby groups that are kinda fronted by doctors and hearing devices companies to push for mandatory insurance coverage of CIs

– see that there are alot more questions than answers re: CI safety

– see that the FDA and Dept of Justice and a court in Denver (to the tune of $5.9 million) aint so happy with some CI manufactors

– see that the profit margin for CIs is out the ROOF!!!!!

– see that there is money in them thar ears

– see that no one really seems to be talking about bilingualism and biculturalism

– see that Auditory Verbal Therapy is kinda confusing – can the the AVT therapist sign with the kids or cant they and the covering up of the mouth to force them to work for their words – well that is just too reminiscent of oral / aural-ONLY that mom and dad grew up with

– see that no one is celebrating your Pat being Deaf

– see that everyone is ACTIVELY PUSHING and PRESSURING you to make your Pat as undeaf as inhumanely as possible

– see that if they dont love and accept Pat for who s/he is what does that mean about what they must think of me

– see they have a slicky sickly sticky smile when they talk to me – yes they are signing and i can understand them quite well but why is it i feel like im in 3rd grade.

– see that when my hands are not hold my baby Pat, they are instead folded in my lap waiting quietly for their turn to sing but the turn never comes

so much to see and hear and say and UNDERSTAND

i am tired, my partner and I steal glances at each other – as we alternate between wanting to do the world for our little Pat while also not wanting to betray what she truly is … Deaf

what to do do?

what to do do?

“Oh, and don’t forget to see the receptionist on your way out to pay the bill,” says the specialist as s/he smiles through their teeth and pats you on the back while wiping off a bit of goop from baby, Pat’s ear. “Ya all come back now, you hear,” finger waged & eye winked.

stay tune for Part IV

parentsdeafnih Interesting study re: people’s perceptions in terms of potentially having a Deaf child.  (thanks, mike)

other TRUE STORY v/blogs on this topic:

Shel: A Deaf Canadian’s Thoughts”Parental Choice: Truth or Illusion?”

http://www.deafcanadian.com/2011/03/06/parental-choice-truth-or-illusion/

John Warren

http://www.facebook.com/permalink.php?story_fbid=10150157193880757&id=694625756#!/video/video.php?v=1450384158381&comments

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13 Comments (+add yours?)

  1. Trackback: Deafhood Discussions » The Right to Be … Deaf Part III
  2. Dianrez
    Mar 05, 2011 @ 18:40:44

    It’s true they drug up the baby for the ABR test. This is an opinion from Hands and Voices: http://www.handsandvoices.org/articles/research/v12-4_sedate.htm
    that questions the necessity for using drugs.

    With my baby they weighed him and pried his mouth open to pour a small beaker of red fluid down his throat. He coughed, cried, and swallowed. Soon he lay very still in my arms. He was put on the tray and hooked up to the machine that displayed his brainwaves, and earphones placed on his tiny head. He was just five months old.

    I was never told of risks nor that his sleep would be so profound. He didn’t twitch the normal baby flutters, but lay there so pale and unmoving that I thought he might not be breathing, but the waves on the screen told me his brain was still working. About the time the test ended, he began to flutter his hands and wrinkle nose again.

    Although the test was conclusive, I was asked to bring him back for another test. I never returned. From that point on I took him to the school for the deaf where they conducted their own hearing tests without drugs while starting him on an infant program.

    I’d recommend any parent receiving a “fail” on an EDHI test immediately contact a specialized program for deaf children.

  3. Barb DiGi
    Mar 06, 2011 @ 15:53:31

    Oh, I remember so well when I had my first baby 13 years ago. When he was 2 days ago, they told me that his hearing test had failed.

    That was the time when babies tend to sleep a lot so no sedatives were needed when my son took the ABR. Already, the audiologist used the word “fail” for my two days old son that pissed me off. I had to correct the audiologist by responding, “Oh you mean he passed being Deaf?” He looked confused so I went on telling him,”Look, I came from a Deaf family and my son already have two sets of Deaf grandparents and some Deaf cousins so for you to use the word fail is an insult to me and my family.” I was tired and weak in bed after giving a C-section but if it weren’t for that, I would slap his face, seriously.

    He told me that I would have to come back a few months later to have my son take the hearing test to confirm that he really have a hearing loss. When he was 3 months old, I received a letter stating that my son would have to be administered with sedatives. I called the hospital to protest since I made a suggestion that there are other ways to put babies to sleep. I demanded them to provide a baby swing that will put my son to sleep and they did set it up for me. Just simply nursed my son and put him on the swing made him all comfty and sleepy did the trick.

    I was miffed that they didn’t provide that option in the letter as I told them they should have instead of only providing to drug them babies which was so unnecessary. Yes, it took a bit more time but so what? They have to be patient (heck, they get paid for it!) as it only takes an half hour extra to make this work rather than dealing with a drowsy, drugged baby and who knows what kind of effect it will cause for lifetime?

    Finally, it was confirmed that my son is Deaf so I smiled and jumped with glee in front of them. I wished I took a video of that but didn’t have proper equipment at that time. You should have seen their faces like something was stuck in their buttholes or whatever.

    When I had my second baby, they didn’t offer a hearing test at the hospital due to a cut in grant at that time. It was when before ABR was mandated. I shrugged and didn’t bother to follow up until my daughter was 8 months old. Being stuck with the system, I had to get her tested so that she would be qualified to enroll in a school for the Deaf. I already knew she was Deaf based on her behavior but I felt like it was a forced situation that a proof was needed in order for her to be eligible to get services at school.

    Both of my babies were fitted with hearing aids when they were babies but they did not express their interest so I just follow their lead. They should not be forced to wear them and ever since they are happy, content children. My son doesn’t wear hearing aids but my daughter does whenever she feels like it.

    Great post, Patti! I love your series and it is a good read for everyone, indeed! The right to be Deaf, yes!

  4. Shel
    Mar 06, 2011 @ 16:34:01

    Wow, Barb and Diane.

    I absolutely disagree with drugging babies for hearing tests. I didn’t have that experience. I simply nursed my boys to sleep so the audiologist could test them. With my twins, no drug was administered as the ABR test took place the morning after the twins were born. As newborns tend to sleep a lot, it wasn’t an issue. But, audism was still an issue despite the fact my babies were found to be hearing.

    I’ve just finished making my vlog related to this issue and am currently working on an English translation. The vlog will be up soon, and the blog at my website should be up today.

  5. handeyes
    Mar 06, 2011 @ 18:00:23

    from Shawn in a FB thread of this blog entry (shawn thanks for the permission and for sharing):

    My baby was sedated + anthesidia (mispelled) before gone to his ABR machine! It was so hard becuz I cannot breastfed him! He was so MAD at me for not feeding him!! He cried + fed up with ABR controlling him! After ABR test, he cried and scolded me for letting him go! I felt guilty!

    con’t comment
    That was happening was after the 2 months old (after my maternity leave was ran out in 1994.). I know his dislike the breast pump bottles every nights! That was when I used to work at 2nd shift hours! Remembering that my health care insurance did covered some but I did paid almost $875.00 from my pocket for that stupid ABR test + medication!!! Sighs!

    con’t comment
    When I was stuck in the hospital after birth, the doctor was NOT sure that my baby has some hearing loss + he refused to diagnosis him Deaf but he wanted to have another more test on my baby in next 2 months + gave me schedule + advised me not to feed the baby in 12 hours before the ABR test.

  6. Trackback: Parental Choice: Truth or Illusion? :Shel: A Deaf Canadian's Thoughts
  7. Jean Boutcher
    Mar 06, 2011 @ 20:17:01

    Barb and Diane,

    Sedating babies for hearing tests is the most unheard-of thing I have ever read!

    It was so intruiging reading your stories that I think you might be contemplating forming a club for deaf mothers to tell stories about their experiences with babies and crazy doctors and audiologists in the form of a book. The first professional people to read the book would doubtlessly be doctors/audiologits! That would slap the faces of the bribers, namely, cochlear corpoates and AGBell!

  8. deafmommy
    Mar 07, 2011 @ 00:31:18

    They sedated my son to test for his hearing — I asked them why they did that — they said that they needed babies to stay absolutely very still and not to move at all so that they could test babies more effectively.

    And all that was done in a very short time…

  9. handeyes
    Mar 07, 2011 @ 02:49:25

    From Michele Westfall Ketcham in a FB thread (thanks for allowing me to reprint here)

    My experience was the same as Don’s…initial tests were done at the hospital…and the follow-ups were done elsewhere. Both were done while my babies were sleeping…and at one time one of my babies remained awake, and they asked me to hol…d my baby to keep him calm during the test, and it worked out fine.

    My boys are now 5 and 3…both are Deaf. I thought it was the usual procedure to ask parents to bring in babies during their sleep times OR if that’s not possible, to hold their babies in their arms to keep them calm. One audiologist even had her testing area lights set at a low setting to try to set up a calm atmosphere.

    my first son was born in upstate New York….and my second one was born in Indianapolis.

  10. handeyes
    Mar 08, 2011 @ 12:18:13

    Thank you all for sharing your stories

    They are VERY important and help me see how pervasive and insidious audism can be

    talk about raining on parades and “the babies”

    wow

    and they call us aggressive and extremists

    hmmm

    peace

    patti

  11. Trackback: The Right to be… Deaf – Part IV « PEOPLE OF THE EYE -…first, last, and all the time” – g. veditz 1910
  12. smartygirlb
    Apr 04, 2014 @ 16:16:21

    just stumbled across this post. i am glad we have universal newborn screening here, as otherwise who knows how long it would have been before we figured out what was up. there was no “fail” and no sedation though. here, if you don’t “pass” the test they never say fail – you get a “refer” to the next level of screening (the initial screening can be thrown off by any noise in the room). when we got to baby’s first audiogram, we were told to keep him awake & unfed for a few hours before the test, to ensure i’d be able to nurse him to sleep (worked fine). the audiologist told us “he’s deaf, he may need surgery to hear, or you could learn ASL.” it was a big shock, i’ll be honest. but finding out early gave us the opportunity to give him language early. we got hearing aids *and* learned ASL – first from books, then we had a culturally Deaf consultant visit our house every week for lessons, and my husband and i also took classes. we also saw a speech-path. we figured, tiny baby, who knows what he would choose, let’s give him everything.

    it was/is a lot of work though.

    i am glad we chose bi-bi. i know there is a lot of arguing on the oralist side and the sign-only side, with some people being very set in their views on both sides.

    but you know what really worries me?

    the families who do nothing.

    they don’t learn sign language, *and* they don’t get hearing aids or do any kind of oralist therapy. they assume their kids will “grow out of it,” and meanwhile these kids are growing up without *any* language *at all.* not spoken. not signed. not good!! so many parents are in denial about their kids’ needs. those are the people that we need to really reach out to, with success stories not scares.

  13. handeyes
    Apr 20, 2014 @ 03:16:31

    smartgirlb
    glad the newborn screening process etc went well for your family.
    some families are still told FAILED – right there on the maternity ward floor
    some babes still are sedated
    and some as you were – are told EITHER/OR
    really no reason for it to be presented that way
    some folks as you noted do NEITHER/NOR and that really is a huge same. it is heartbreaking. many young Deaf folks i know – many of whom speak and have CI and/or high end hearing aids – wish their families signed

    its not just cuz of language deprivation – many of these youths have learned English INSPITE of the various systems – but many of them wish their families signed so that they felt like an equally valued and respected member of the family – for the bond for the connection

    im thankful you are giving your child that and more

    thank you for your comment and for sharing your story

    and you are right language deprivation is totally wrong.

    a Deaf child’s brain is a horrible thing to waste

    peace

    patti

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