Sunday, October 29, 2006


Well, it's official. After months of protests, Gaullaudet has rescinded the appointment of Jane K. Fernandes as its next president.

Many people have asked me what I have thought about the controversy. A couple weeks ago, I set down my thoughts in an Op-Ed. I sent it to several newspapers and have not received a response. With the decision to remove Fernandes out of the equation, some of the points in the Op-Ed are now out of date. But many are not. The Op-Ed is below. Please give it a read and drop a line if you get a chance; I am curious to hear what others think of the situation.

What to do about Gallaudet

At Gallaudet, the National University for the Deaf in Washington DC, the students have spent six months embroiled in a landmark protest, blocking the roads to campus, camping out in a tent city and going on hunger strikes. On Friday, October 13th, more than 130 protestors were arrested. Administration, opposing the students, shut the school down for several days. At issue: the selection of the new school president. But not really -- the issue is the future of the Deaf in the world today, and both sides have fed the controversy by ignoring essential emotional and practical realities.

To recap: Gallaudet’s students – as well as the alumni and faculty who overwhelmingly support the students – had no say in the process of choosing a new president, and the one selected for them, Jane K. Fernandes, has very few fans. Born deaf, Fernandes’ parents “mainstreamed” her – that is, she was taught to speak, lipread, and make the most of her very minimal hearing. She did not learn sign language until she was 23. Fernandes’ supporters say that the students are protesting her selection because they feel that, due to her upbringing and educational philosophy, she is not sufficiently deaf, ethnically deaf, Deaf with literally a capital D. They say the students resent Fernandes because they see her selection as a betrayal of Deaf culture.

Try to imagine it from the student’s standpoint: you’re born into a hearing family where for a while nobody knows you’re deaf they just think you’re mentally disabled. When people do learn you’re deaf, they look at you with pity, embarrassment and sometimes even fear. You grow up alone in a way few can imagine, surrounded by people who love you but can’t even speak to you. These people talk and laugh and whisper and watch sitcoms and go to movies and sing along to the radio, things you can never do. They have long conversations over the phone, and maybe 99 percent of the time, the conversation is really about nothing much – but imagine if you’ve never once talked on the phone! It must seem like a direct hotline to happiness.

When I worked as a mental health counselor at a School for the Deaf for children aged 0 to 21, the time of year we dreaded most was holiday season because on holidays our students would go home and be surrounded by huge extended hearing families in joyous, celebratory moods – and they would be outside of all that. Sitting right at the table with everyone else, but left out. Even with the best of intentions, unless everyone at the table was fluent in sign language, our students would always be more or less left out of the festivities. We actually encouraged many of them to pile their plates up with food and go to their bedrooms and chat online with their friends from school, so that they could enjoy some connection.

Thanksgiving, Christmas, the happiest days of the year – and you’re alone. Picture then the emotional catharsis of a deaf adolescent coming to Gallaudet University and meeting a community of thousands just like him or her. Thousands of people who know that loneliness – and more important than that, who are overcoming it, who are forming enriching, satisfying and enduring relationships. People who will talk to you about anything: politics, love, Survivor, the girl with red hair in Bio class as opposed to aunts and uncles who shout ‘You look good!’ right at your face and pat you like you’re a family pet.

This – the shared wound and the astonishing, out-of-nowhere healing of it – is Deaf culture.

The Board of Trustees at Gallaudet is made up of individuals who have not had this experience. As a result, the board has made an egregious mistake in not recognizing the emotional sanctity Gallaudet has in the Deaf community; in not understanding the attachment of the school’s students, alumni, faculty to the place where they became part of a greater world. Whether Jane Fernandes is qualified to be the next school president isn’t actually the issue: in refusing to give the community’s members a voice in choosing their leader, the Board has reawakened the trauma for the community of the fat auntie leaning over to shout “what a good little boy you are!” Gallaudet is not like other universities and its system of choosing a president needs to be changed to reflect that.

But the protestors have made a mistake, too. Ironically, their mistake is in overly championing their deafness. They have framed their struggle around the question, what does it mean to be deaf? And that is the wrong question to be asking. They need to be asking, as their hearing counterparts are, or at least should be, what does it mean to be human? As it stands, the way Gallaudet’s protestors are seeking more self-determination has been separatist: by promoting their uniqueness. But separation doesn’t work. Separation has already made the community ostracized, alienated and disempowered from larger society and to continue to pursue that separatist agenda is a dead-end street. Witness the misguided recent attempts to build a Utopian town for the signing Deaf in Laurent, South Dakota. Will that work? No, it won’t.

Granted, when you have spent much of your childhood alone in a vacuum of silence, being told repeatedly consciously and unconsciously how you are inferior, it is a lot to ask you to look past the intense emotion you feel on finally connecting with a community. But it needs to be asked of the Deaf protestors. The protestors need to find a way to both celebrate their deafness and reach out to the larger hearing world – a reaching out which will most often be rebuffed or ignored, because that’s how things are. Nevertheless, they need to do it. Incredible technological and surgical developments are totally re-imagining the future for children now born deaf so that more and more of them are being mainstreamed into the hearing world, and consequently the Deaf community, if it continues on its present course, will get smaller and smaller and more and more marginalized. So, along with changing the process for naming a president, Gallaudet’s administration and students need to ascertain not just that inclusion is on the agenda, but that inclusion IS the agenda. Beyond that, reaching out is something all of us should do. Otherwise we’ll continue to split ourselves us up into black and white, Democrat and Republican, Israeli and Palestanian, Deaf and hearing, and bicker endlessly instead of seeking common ground.

Sunday, October 22, 2006

A Few Things

Below is an update from a couple weeks ago that I forgot to post, about Otis attempting surgery on my implant.

I’ve also written and not posted a piece about the protests at Gallaudet University. It’s going to make the rounds at newspapers and websites first, to see if there's any publication interest, but will be up here later this week.

Interesting days at Gallaudet, for sure. The signing Deaf community is making a stand, whether it’s an appropriate one remains to be seen. There’s good coverage on the situation in the Washington Post and out in the blogosphere.


…that’s what I said when I looked down from my perch on the couch and over a stack of papers I was editing to see Otis lying on the floor beneath me, and in his jaws, my implant,the treasured, treasured implant, in 6,000 pieces. To say he broke it would be an understatement; to say he chewed it, also doesn’t cover it. That implant could not have been any more destroyed if George Bush had endorsed it.

What to do?

First, of course, to put Otis in his cage and have a second beer, then, to look at the implant. I have to say – scattered in 6,000 pieces, it was a much less impressive thing than I expected it. Given that it had given me hearing to a degree far beyond what I ever thought was possible, I assumed that inside of the implant was some combination of gold dust, cyborg technology, steroids, and computer chips that were actually alive…but it was just plastic mostly, and flat green pieces mottled with teeth marks.

AJ called Cochlear Corporation and they told her, “It happens, no biggie, but the next one that gets eaten costs you seven grand.” I brought the chewed up implant to the NYU Coch center along with my spare, which needed a magnet (Otis ate that too) and an updated program.

Meg was there, and when I opened the envelope and spilled out the pieces of the destroyed implant, she just laughed.

“I don’t think we can fix this,” she said.

She told me some stories of destroyed implants: canine homicide was the most popular method, but there were other ways – one had been flushed down the toilet; another had fallen in a gutter; and in her personal favorite, one couple had driven away from their implant center leaving the implant of their one year old baby on the car roof – not two hours after they had received it. When they realized what they did, they threw the car in reverse to get the implant and drove right over it.

The point of the story: it happens. But also, it feels good to have this kind of support behind the implants. And also: please, keep your dogs away from expensive and fragile hearing devices.

“Thanks for everything,” I said to Meg. “I don’t feel so stupid now.”
“I want to keep this,” she held up a couple of pieces. “I’m framing it as a warning to others.”
“A warning?”
“Yes. And now you’ve got to keep Otis away from your implants from now on.”
“He never had any interest in them before,” I said. “I don’t think he’s into technology.”

But then two days later he ate AJ’s cellphone.

Friday, October 06, 2006

High Ceilings. Tough Questions. The Wonderdog

Just when it seemed like summer would hang around forever like that weird congressman outside the Boy’s Club – bang, it’s fall.

Was a beautiful day in the city. The air had that crispness. Otis and I are alone for a week as AJ and Amos have decamped to Nashville where AJ’s sister is due to have her second child any day. I’ve used some of the alone time to teach Otis to sit and stay, though so far he’ll only do these for a treat. No treat and he gets unruly.

“Mr. O,” I pleaded with him, “Sit for the love of sitting, for loyalty, for friendship, trust. There is more to life than Milkbones.”
To which he replied: “The heck you talking about? It’s the left pocket isn’t it?”
“No, Otis. You’re not listening. It’s not about the food.”
“Gotcha, gotcha, gotcha,” he said. “What’s in the hand? What’s in the hand? WHAT”S IN THE HAND?”

Last night, I put him in his cage and went to a dinner for three thousand people at the Waldorf Astoria Hotel. I’d never been there before -- Holy Crap, I didn’t really believe such places existed. It was like walking into a Henry James novel, a Monet painting. In the front hall was a fifteen foot high flower bouquet that defied gravity. On the stairs young women passed me dressed like they had just fallen off a modeling catwalk – I’d never seen anyone wear such outfits in real life. In the lobby, the ceilings were twenty feet high and covered with a paintjob so fine it must have been applied with eyeliner brushes.

The dinner was being put on by the Turkish Cultural Center to celebrate the end of Ramadan. My aunt Marcia, a magnificent Whirling Dervish Sufi Dancer (among many other things) had been invited by the Turks to perform. The featured speaker was someone named Hillary Clinton. The waiters served Baklava covered with drizzled honey and gold.

I texted AJ: “I think I have entered an alternate universe. I’m not sure this is quite my speed.”
She texted back from Nashville: “I just got my toes painted purple in a place that is blasting Auld Lang Syne and has pictures of Reagan on the walls.”
“Touche,” I wrote.
There was a call to prayer. Then seventy-seven speeches, each one longer than the last. I heard every word of the speeches, which sadly, didn’t mean they were any less boring. To me the measure of a speech's boringness always used to be whether I could hear it or not. No longer.
“Are they singing that ‘Istanbul used to be Constantinople’ song?” AJ asked.
“No,” I said. “And I don’t think they will.”

But maybe they did. Maybe Hillary led them in the chorus after swooping to the stage from a rope tied to a chandelier. I don’t know. I left to walk Otis. The future president lost out to the pup in the cage. I hope he appreciated it.

“Sit,” I said to him when I got home.
He ran right past me. “Hell no,” he said. “I got something to do."


Shifting gears from that exciting business, I’d like to address some really good questions that I received from Chris on the last post.

His first question is about finances. What’s the damage on the CI operation? Well, mine cost about 75 thou, a nice chunk of change. That includes the surgery, the implanted and external part of the device, some spares and batteries, and a night in the hospital. In my case, insurance covered all except about 3500. That amount, the co-pay was handled nicely by my friend Mr. Visa.

Chris’s second question is more complicated. How has getting the implant affected my relationships with my deaf friends? Good question. Very good, so good that I’ll answer it in a future post devoted just to that subject.

See what I did there? Sorry bout that.

Finally, Chris, I’d like to say that I don’t think that implant recipients are mostly white and middle class. There’s an interesting reason behind this. Implants are covered by insurance -- even government funded insurance like medicaid covers them -- hearing aids, on the other hand are not covered. The cause for this discrepancy, far as I can tell, is that surgeons have a more powerful lobby than audiologists and so are better at getting their services covered. A nice result of this is that children are not being denied implants as a result of financial hardship. A not-so-nice result is that some of these children getting implants would probably do fine with a hearing aid – which they can’t afford.

At the Lexington School for the Deaf, a school in Queens where I worked for a year, three-quarters of all the pre-school kids have implants. However, as I’ve mentioned many times before, just getting an implant does not assure success. You need to work at it and you need a lot of training and support. And what’s unfortunate is that many of the lower income deaf children who get implants don’t get the training and support. Then they get stuck in a tough spot.

It’s an interesting, complicated issue. Someone could write a thesis on this, and in fact, I know someone who has. I’ll ask her for her thoughts.

Thanks for the questions.