Monday, October 11, 2010

The politically incorrect miracle cure for deafness

If your only sources were mainstream media and best-selling books, you might think that autism has been cured many times over, whether through consuming therapies like Applied Behavioral Analysis, Floor Time, or The Diet, or through mysterious institutes with names like Options and Halo. And you might struggle to name a single cure for deafness.


But if you're the parent of a deaf, autistic child, you know which of these conditions has an actual cure. And you're reminded of just how miraculous that cure is once a year when you sit in the sound booth with your deaf child for his cochlear implant checkup--as I did this very morning--and listen to him repeat back, one by one, a random sequence of out-of-context, disembodied words. 

Ice cream, lawn mower, telegraph... I marvel at how confidently J's lips move, and then shift my gaze to his ears--around one of which hangs a tiny micro processor that is providing the missing link between the sound booth sounds and his moving lips. I imagine what lies behind these large, delicate, and perfectly normal porches of cartilage: travel through the middle ear and the tympanic membrane, and you'd find cochleae so congenitally malformed that they've never conveyed even a soupcon of sound to his auditory nerve.  Some two years after it should have started getting messages, that nerve began receiving electrical signals from an SPrint Processor.  Months later J began recognizing first sounds, then words, then phrases; eventually, he began to articulate them back.  All this without the intensive, grueling therapy that so many professionals had warned us was necessary. 

Just after turning six, J was gently booted out of the school for the deaf he had attended since preschool. No, not because of his as yet-uncured autistic mischievousness; rather, because he was now--for all our attempts to raise him bilingually--insisting on speaking at the expense of using the sign language that teachers expected.

Why do so few people know about the miracle cure for deafness, when so many know about miracle cures for autism?

Part of it is that autism is tens times more prevalent than deafness and many people have never met a profoundly deaf child, let alone one with a cochlear implant. Part of it is that implant clinics (unlike certain autism clinics) are cautious about raising expectations too high. Part of it is that speech and audiology clinics have an incentive to overstate the need for intensive post-implantation rehabilitation, repeatedly asserting, in the process, that cochlear implants are not a cure for deafness. But the most interesting reason why our society has avoided the c-word is political correctness vis a vis the world of Deaf (culturally deaf) people.

One of the loudest arbiters of this political correctness is Harlan Lane, historically a prominent Deaf culture advocate, non-deaf though he is. Here's how one of Lane's acolytes characterized his views on implants back in 1999, a year or so after J was implanted:
Get hold of a copy of Harlan Lane's book from several years ago
called "The Mask of Benevolence" (Knopf, 1992) in which he indicts a
whole set of attitudes which he characterizes as "audism" on analogy
with "sexism, racism,..." etc., namely the attitude that hearing is
always better than non-hearing and that the values associated with
hearing weigh in as more important than those associated with
deafness. Audism equates deafness with impairment, brokenness, etc.
The subtitle of the book is "Disabling the Deaf Community".

Lane also looks at the data on cochlear implants (at least what was
known up to then) and in a long and complex set of arguments concludes
that it is unethical to implant children, given that the surgery has
such failure rate, that the costs (both in money and in time/effort on
the part of the child and the family) overshadow everything. The
surgery is destructive of the physical structure of the cochlea and
other parts of the ear, so should some later therapy be discovered
with less invasive procedure, these CIs would not be candidates for
any other surgical procedure. The hours of rehabilitation for CIs
rivals the hours of practice for competition sports, with as much
psychological pressure to succeed. Who wins most in the CI model?
Medical and allied health professionals without a doubt in monetary
terms.

The fiction being sold to parent of deaf infants and children is that
somehow the CI will make your child non-deaf. Not true. Even the
successful CI is a deaf person, where "successful" means the surgery
worked, the device works, and the individual learns to interpret the
signals as speech/noise/meaningful.
How could people dare to engage in such contortions and distortions, I wondered, particularly when the education (linguistic and otherwise) of vulnerable children was at stake? I had a lot to learn back then, and this was my first inkling of what was yet to come.

4 comments:

Mrs. C said...

I had no idea J was deaf! One of my older children had ear tubes and I thought NOW we will see all these other odd behaviours go away.

Nope. Autism. We knew *so little* then and it took so long to get the proper diagnosis. Now, all we have to do (apparently) is wait 6 months for an appointment, walk in to the developmental clinic and explain we have other autistic children and dad is a computer programmer. Yup. Instant diagnosis... voila! Or at least it seems that way in comparison to the way they diagnosed in the past (um, they really didn't).

Nancy Bea Miller said...

I was recently chastised by a very p.c. special needs parent after a presentation in which I said someone was deaf and slipped up one time and said that my son was autistic "That's has autism and has auditory differences!" I was corrected firmly. Ooookay.

BTW, I remember praying that my son Henry was deaf, I mean, had auditory differences. That's one of the first tests pediatricians order, typically, when ASD symptoms are present. Unfortunately my prayers were not answered. Profound autism instead.

Hainish said...

Many autistics who can speak would say they ARE autistic, rather than that they have autism.

Katharine Beals said...

Good point, Hainish. Similarly, most deaf people choose to be called Deaf and find euphimistic contortions like "have auditory differences" insulting and patronizing.

Funny how the pc language police haven't bothered to check in with those whose feelings they are laboring to appear to be respecting.

@Mrs. C--love the "all we have to do is wait 6 months for an appointment"!! Question: does your clinic bother with therapy these days, or only the one time diagnoses?