"It’s about customizing your body..."

He couldn’t hear, I couldn’t speak, and we had a great interview.

I first met Ian Michael Smith in 1998, when the Elmhurst native was 11 years old and starring in the movie “Simon Birch.” Now he is 20, a sophomore at MIT, majoring in electrical engineering and computer science. In those nine years, Ian hasn’t grown an inch, and an inch would be a lot, because his height is 3’2”.

He is one of the smartest people you’d want to meet, cool, calm, funny. He gets around by himself in a motorized wheelchair. When he flies to Boston, his parents wave goodbye at O’Hare security. At MIT, he doesn’t have a care-giver. Just turns up on his own.

When Ian was three, he was diagnosed with Morquito's syndrome, a form of dwarfism which limits his height but not his life span. A side effect of the syndrome is increasing deafness. On Aug. 8, he had his new cochlear implant activated by Dr. Stephanie Yaras at the Children’s Memorial Hospital Westchester clinic. The implant was surgically inserted into his brain three weeks earlier by Dr. Nancy Young at Children's main hospital in Lincoln Park.

With cochlear implants, sounds are picked up by a microphone attached to the side of the head, and bypass the ear with a wire that transmits them directly into the auditory centers of the brain. It takes some therapy to learn how to interpret this form of sound wave, so when Ian and I met on the day after his activation we had our work cut out for us: I can’t speak at the moment because of post-surgical complications that require a trach tube.

No problem. We sat in my living room and used our Mac laptops; I sent him questions by Yahoo Messenger, he responded verbally, and we recorded his answers. I have recently become fascinated, for obvious reasons, with the varieties of human communication. Now sitting before me was a man who uses himself as a lab for electronically-assisted living.

He arrived with his parents. His dad, Steve, is a hospital management consultant in electronics, and his mother, Gayle, is a middle-school band director. Ian once played the trombone and sang in the choir; indeed, in 1998, he seemed involved in every possible after-school activity including the Cub Scouts.

“Three weeks before yesterday was the surgery when I had the implant put in my head,” he said. “And now that everything’s healed, yesterday I got this outside thing turned on for the first time. We tested electrodes and set their volumes separately and got speech turned on for the first time. Because it’s only been a day right now all I’m really getting is a rhythm, a beeping.”

He said his hearing loss has been progressive, “and then my freshman year I got an ear infection that traveled into the bone behind my ear, and I ended up with no hearing in either ear, because I couldn’t wear my hearing aids. I lost my entire spring semester to that. At MIT, there’s a lot of communication going on, so this implant will make a big difference.”

Ian used everything possible to hear better: “I used a system called CART, Captioned Audio In Real Time. It’s a way of typing phonetically, like court reporters. I had the CART reporter there. And I used an FM system so that the professor was miked with a transmitter that sent directly to my hearing aids. For small group situations, I just lip read or do all the things you normally do, like make sure it’s a quiet environment, or get people to repeat things when necessary.”

How did this go over at MIT?

“The professors were fascinated. Here was this cool new device in their classroom, this CART. I think maybe they were a little disappointed to learn it’s just a dictionary, not speech recognition or artificial intelligence. And now comes the implant, and this is MIT, where we love Star Trek, we love sci fi--this is the geeky dream, right?”

What’s amazing, he said, is how much the human brain can do with so little: “The brain is fantastic at finding patterns with very little actual information. When you talk to people who lost their hearing later in life, they’ll tell you almost to a person that when they lip read, they hear. With an implant, the brain is reconstructing tens of thousands of nerves-worth of signals from maybe only 20 or so inputs, and yet by the time the patient adjusts, it sounds in most cases very natural.”

In John Irving’s novel A Prayer for Owen Meany, I said, your character thinks God has a purpose for him, and gets infuriated when he senses condescension. But you seem pretty level-headed.

“I feel a certain serenity and inner happiness, a sense of rising to the challenge. That’s what it’s about. And I’m lucky I haven’t had normal hearing as long as I can remember, so that’s not something I aspire to. If I can understand speech and music, I’m going to be very happy. If you suggested to me that I was going to wake up tomorrow with perfect hearing in both ears, that would be quite a shock to me.”

Just in terms of daily living, his father Steve said, “I wanted him to go to Stanford because the electric scooter doesn’t travel in the snow. I was saying, they have ramps, and there’s sunshine and he says, no, I’m going to MIT.”

“It’s worked out,” Ian said. “I can’t say I haven’t gotten stuck in the snow but I’m still alive.”

Gayle said, “He’s very active in improving the accessibility around campus and around Cambridge.”

“And outside of Cambridge, in Boston,” Ian said. We spoke about our mutual friend Marca Bristo of Chicago, founder of the disability rights group Access Living, who will have her face on a postage stamp one of these days.

I asked how many people still remember that he was in Mark Steven Johnson’s “Simon Birch,” which also starred Joe Mazzello, Ashley Judd, David Straithairn and Oliver Platt, although it centered on his character.

“My friends mostly know that I was in ‘Simon Birch.’ The professors? I don’t know. Every now and then I’ll be talking to a friend who I’ve known for a couple of years and they’ll go, ‘wait, hang on, I just heard something from a mutual friend of ours…’”

No temptation back towards showbiz?

“I’ve moved on. Right now I’m doing the college experience, so that part of my life is probably over.”

That brought us around to the use of dwarfs in showbiz, the emergence of Peter Dinklage as an authentic star, and the now-disapproved term “midget.”

“I prefer dwarf,” Ian said. “I think Little Person is generally accepted.”

Steve said: “We go to the Little People of America convention. I freely use the words ‘dwarf’ and ‘little person,’ and they are always accepting of those terms. The term ‘midget’ would be a term to stay away from. No matter how much I look into it, I can’t figure out why they picked that one to dislike.”

There was a dialogue on my web site, I said, initiated by a dwarf actor named Daniel Woodburn, who explained a lot of things. He said “midget” was coined by P.T. Barnum to describe Tom Thumb.

“Yeah,” Ian said. “I read that. I think in the end it’s not about where it comes from. You use the terms that are accepted because that’s the way to communicate with people without having anyone get bent out of shape.”

His father said, “Originally there was nothing bad about ‘midget,’ in history.”

“At (ital) one (unital) point in history,” Ian said, in that firm understated way I remembered he had even at 11. He has a way of tactfully letting you know that he is right.

“Consider the word ‘gimp’ as an in-term and you see the same thing,” Ian said. “It’s fascinating to see people discussing whether using it is reclaiming the word, or buying into the bad connotations that go with it. You oughta see the disability rights blogosphere latch onto that one.”

Will that science-fiction dream of people merging with robots ever come to pass? I asked.

“We’re seeing advances in human augmentation that we had no idea 10 or 20 years ago would be possible. I don’t think anyone ever expected cochlear implants to be as advanced today as they are now. Now we have the same sort of technology being used as visual implants to provide sight to people, and to treat Parkinson’s with brain stimulators. It’s not about augmenting human capability for its own sake. In my case, I’m not going to rush out and start injecting steroids just to be strong because I have no use for that. It’s about customizing your body to do what you want it to do.”

His dad mentioned some of the things Ian’s body could do: “When Ian was a boy we started teaching him to sail, and even though he can’t handle the kinds of boats that a 20-year-old usually can, he does have a boat and knows how to sail. You can look at a small person and say, he can’t do that. But he can do it.”

“One of the opportunities Ian got as a result of ‘Simon Birch,’ was he got invited to give public speeches,” Steve said. “He began doing that at around age 12, including the keynotes at medical conferences in Washington. I’m sure that will be incorporated into his professional life.”