NOTE: this is a bit of a series examining if we have the right to be… Deaf.
To see Part I go to:
To see Part II go to:
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
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)
and from what i understand the sedition is not a necessity for the test, it is just for the convenience of the tester
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 they say “BUT…”
and their but beats our butts
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
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
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…” &
“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:
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 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?”