I apologize.  This article is long but I think worth reading.  It's not much
about blind people but it is a lot about people with disabilities.  I hope
you find this as interesting reading as I did.

          Bud Kennedy

Wired 9.08: The Next Brainiacs

W I R E D

Archive |
9.08 - Aug 2001 |
Feature

The Next Brainiacs

This is the story of the most fearless entrepreneur ever: the human brain.

By John Hockenberry

When you think disability, think zeitgeist. I'm serious. We live at a time
when the disabled are on the leading edge of a broader societal trend toward

the use of assistive technology. With the advent of miniature wireless tech,

electronic gadgets have stepped up their invasion of the body, and our
concept
of what it means and even looks like to be human is wide open to debate.
Humanity's specs are back on the drawing board, thanks to some unlikely
designers, and the disabled have a serious advantage in this conversation.
They've been using technology in collaborative, intimate ways for years - to

move, to communicate, to interact with the world.

When you think disability, free yourself from the sob-story crap, all the
oversize shrieking about people praying for miracles and walking again, or
triumphing against the odds. Instead, think puppets. At a basic level,
physical disability is really just a form of puppetry. If you've ever
marveled
at how someone can bring a smudged sock puppet to life or talked back to
Elmo
and Grover, then intellectually you're nearly there. Puppetry is the
original
brain-machine interface. It entertains because it shows you how this
interface
can be ported to different platforms.

If puppetry is the clever mapping of human characteristics onto a nonhuman
object, then disability is the same mapping onto a still-human object.
Making
the body work regardless of physical deficit is not a challenge I would wish

on anyone, but getting good at being disabled is like discovering an
alternative platform. It's closer to puppetry than anything else I can think

of. I should know: I've been at it for 25 years. I have lots of moving
parts.
Two of them are not my legs. When you think John Hockenberry, think
wheelchair. Think alternative platform. Think puppet.

Within each class of disability, there are different forms of puppetry,
different people and technologies interacting to solve various movement or
communication problems. The goal, always, is to project a whole human being,

to see the puppet as a character rather than a sock or a collection of
marionette strings.

When you meet Johnny Ray, it's a challenge to see the former drywall
contractor and amateur musician trapped inside his body, but he's there.
Ray,
a 63-year-old from Carrollton, Georgia, suffered a brain-stem stroke in
1997,
which produced what doctors call "locked-in syndrome": He has virtually no
moving parts. Cognitively he's intact, but he can't make a motion to deliver

that message or any other to the world.

Getting a puppet with no moving parts to work sounds like a task worthy of
the
Buddha, but a pioneering group of neuroscientists affiliated with Emory
University in Atlanta has taken a credible stab at it. In a series of animal

and human experiments dating back to 1990, Philip Kennedy, Roy Bakay, and a
team of researchers have created a basic but completely functional
alternative
interface using electrodes surgically implanted in the brain. In 1996, their

success with primates convinced the FDA to allow two human tests. The first
subject, whose name was withheld to protect her privacy, was a woman in the
terminal stages of ALS (Lou Gehrig's disease); she died two months after the

procedure. The second was Johnny Ray.

Kennedy, who invented the subcranial cortical implant used in these
operations, wanted to create a device that could acquire a signal from
inside
the brain - a signal robust enough to travel through wires and manipulate
objects in the physical world. Making this happen involved creating new
access
points for the brain, in addition to the natural ones (defunct in Ray's
case)
that produce muscle motion. Bakay has since moved to Rush-Presbyterian-St.
Luke's Medical Center in Chicago, where he's part of an institute devoted
entirely to alternative brain-body interfaces. The soft-spoken doctor
wouldn't
describe anything he does as show business, but to me the results of his
work
sound like a real-world version of the nifty plug Neo/Keanu sported in The
Matrix.

"We simply make a hole in the skull right above the ear, near the back end
of
the motor cortex, secure our electrodes and other hardware to the bone so
they
don't migrate, and wait for a signal," Bakay says. The implant is an
intriguing hybrid of electronics and biology - it physically melds with
brain
tissue.

"We use a small piece of glass shaped like two narrow cones into which a
gold
electrical contact has been glued," Bakay says. "The space in the cones is
filled with a special tissue culture, and the whole thing is placed inside
the
motor cortex." The tissue culture is designed to "attract" brain cells to
grow
toward the contact. When brain cells meet gold, the electrical activity of
individual cells is detectable across the electrode. Gold wires carry
signals
back out of the skull, where they are amplified. This produces a far more
sensitive and usable signal than you get from surface technology like the
taped-on electrodes used in EEGs.

To get a broad sense of what the patient's brain is doing, neurologists
perform magnetic resonance imaging and compare changes in the motor cortex
with voltages monitored through the electrodes. Then the doctors get really
clever. The patient is encouraged to think simple thoughts that correspond
to
distinct conditions and movements, like hot/cold or up/down. Gradually, the
doctors extract and codify electrical patterns that change as a patient's
thoughts change. If a patient can reproduce and trigger the signal using the

same thought patterns, that signal can be identified and used to control,
say,
a cursor on a computer screen. The technique is very crude, but what Bakay
and
his colleagues have demonstrated is a truly alternative brain-body interface

platform.

Ray's implant was installed in 1998, and he survived to start working with
the
signals, which were amplified and converted to USB input for a Dell Pentium
box. In the tests that followed, Ray was asked to think about specific
physical motions - moving his arms, for example. Kennedy and Bakay took the
corresponding signal and programmed it to move the cursor. By reproducing
the
same brain pattern, Ray eventually was able to move the cursor at will to
choose screen icons, spell, even generate musical tones.

That this was in fact an alternative platform, a true brain-machine
interface,
was demonstrated after months of tests, when Ray reported that the thoughts
he
used to trigger the electrode - imagined arm motions - were changing. He was

now activating the electrode by thinking about facial movements, and as he
manipulated the cursor, doctors could see his cheeks move and his eyes
flutter. Kennedy and Bakay had predicted that Ray's focused mental activity
might result in neurological changes, but to see actual facial movements was
a
surprise. It didn't mean that his paralysis was receding, rather that his
brain had tapped into capabilities rendered dormant by the stroke. The
results
showed that Ray's thoughts about motion were triggering clusters of motor
neurons.

How? Kennedy and Bakay presumed the implant had put various motion centers
in
Ray's brain back into play. Disconnected from the body/hardware they once
controlled, these neurons now had a crude way to interact. Adapting to the
new
platform, Ray's brain was demonstrating a flexibility standard worthy of
Java
or Linux.

As the brain cells in and around Ray's implant did what he asked them to do,

the imagined sensation of moving his body parts gradually disappeared
altogether. One day when his skill at moving the cursor seemed particularly
adept, the doctors asked Ray what he was feeling. Slowly, he typed
"nothing."

Ray was interacting directly with the cursor in a way similar to how he
might
once have interacted with his hand. "People don't think, 'move hand' to move

their hands unless they are small children just learning," Bakay explains.
"Eventually the brain just eliminates these intermediate steps until the
hand
feels like a part of the brain." The description reminds me of how I've
heard
Isaac Stern describe his violin as an extension of his body. I think of my
wheelchair the same way.

The implant put Ray's motion centers back into play. Adapting to the new
platform, his neurons demonstrated a flexibility standard worthy of Java or
Linux.

The fact that Ray's cursor is indistinguishable from almost any other
prosthesis raises an important philosophical question: Because of the
implant,
is a Dell Pentium cursor now more a part of Johnny Ray than one of his own
paralyzed arms?

The National Institutes of Health is interested enough in this technology to

have provided $1.1 million in seed funding for an additional eight human
tests
that will continue over the coming year. Bakay hopes the next patients won't

be as profoundly disabled as the first two. "The more kinds of applications
we
find for this," Bakay says, "the more we learn about it."

From my perspective as a wheelchair puppet, life is a question of optimizing

the brain-machine interface. In the beginning, this was far from obvious to
me. My spinal cord was injured in a car accident when I was 19 - an utterly
random occurrence in which a woman picked me up while I was hitchhiking and
later fell asleep at the wheel. She died. But I emerged from her crumpled
car,
then from a hospital, and resumed my life. I looked for a way to describe
what
I was doing: Rehabilitation was a word for it. Courage was a word for it.
Coping was a word for it. But none of those labels even approached the
reality
of what relearning physical life was all about.

Since then I've been improvising motion by merging available body
functionality (arms, hands, torso, neck, head) with a small arsenal of
customized machines (wheelchairs, grabbers, cordless phones, remote
controls,
broomsticks with a bent nail pounded into the end). At times I've seen my
own
quest for new physical ability in odd places - a musician seeking
virtuosity,
an athlete seeking perfection. I've become convinced that the process of
fine-
tuning one's mobility through practice and the use of tools is as old as
humanity itself. I've come to believe it is identical to an infant's task of

developing coordination while facing near-zero available functionality of
legs, arms, and muscles.

There is no better puppet show than watching your own children teach
themselves to walk. In my case, it involved watching Zoë and Olivia, my twin

daughters. Their strategies were complicated improvisations that proceeded
from observing the world around them. Olivia made especially good use of her

hands and arms, grabbing tables, drawer handles, and the spokes on my
wheelchair to pull herself upright, where she would stand in place for long
periods of time, feeling the potential in her chubby little legs.

Zoë spent weeks on her stomach flapping like a seal, hoping somehow to
launch
spontaneously onto her feet. She did not see her legs as helpful, and to her

credit, in our house walking was merely one of two major models for
locomotion. One morning, well before she was 2 years old and long before she

walked, I placed Zoë in my wheelchair and watched as she immediately grabbed

the wheels and began to push herself forward as though she'd been doing it
for
years. She had even figured out how to use the different rotation rates of
the
rear wheels to steer herself. Zoë had grasped that the wheelchair was the
most
accessible motion platform for someone - in this case, an infant - who
couldn't use her legs. She smiled as she looked at me, with an expression
that
said something like, "Give up the wheels, Mr. Chairhog."

Zoë and Olivia walk perfectly now, but their choices in those formative
weeks
were startlingly different. In both, the same brain-machine transaction was
at
work creating functionality from what was available. Engineers and designers

have discovered that this is a process as distinctive as fingerprints. Every

person solves problems in his or her own way, with a mix of technology and
body improvisation. The variables are cultural and psychological, and
precise
outcomes are difficult to predict - but they determine what technology will
work for which person. Think puppetry as a universal metaphor for the design

of machines.

Jim Jatich has been a cyborg puppet for years now and is proud of it. A 53-
year-old former engineering technician and draftsman from Akron, Ohio,
Jatich
is a quadriplegic who first donated his body to science back in 1978. A
near-
fatal diving accident the year before left him without use of his legs and
hands, and with limited use of muscles in his arms and shoulders.

The computer term expansion port was unknown back in the late '70s, but
Jatich's doctors at Case Western Reserve University in Cleveland arrived at
the same idea. They imagined building an alternative path around Jatich's
injured spinal cord to restore a local area network that could be controlled

by his brain.

In a series of operations and therapies starting in 1986, Jatich became the
first human to receive surgically implanted electrodes in his hands to mimic

nerves by stimulating the muscles with tiny bursts of electricity. The
process
is known as functional electrical stimulation, or FES. By using a shoulder-
mounted joystick to trigger patterns of electrical impulses, Jatich was able

to open and close his hands. Others have since used the technology to move
leg
muscles and allow the exercise of paralyzed limbs.

Two years ago, a research assistant named Rich Lauer came to Jatich with the

suggestion that he think about tapping into his brain directly. "This one
sounded real crazy," Jatich says. "He claimed he had a way to see if I could

control first a computer cursor and then maybe the muscles of my hand, just
by
thinking. I thought it was BS," he says with a wink. "You know, brain
science."

Researchers placed a skullcap containing 64 electrodes on Jatich's head.
These
produced a waveform of his brain activity, though the signal was much weaker

than the one obtained from Johnny Ray's cortical implants. Like Ray's
doctors,
the researchers asked Jatich to concentrate on simple but opposite concepts
like up and down. They carefully observed the EEG for readable changes in
brain patterns. They used software to measure the maximums and minimums in
his
overall brain wave and to calculate the moving averages in exactly the same
way stock analysts try to pull signals from the jagged data noise of the
stock
market. A pattern was identified and fashioned as a switch: Above the
average
equaled on; below the average, off. With this switch they could control a
cursor's direction and, as a hacker might say, they were "in."

When I used the Ibot for the first time, the chip was making the wheels
move,
but my brain's own sense of balance merged instantly with the machine. Its
decisions seemed to be mine.

While Jatich's doctors worked to optimize the software, he concentrated on a

wall-size computer screen. Monitoring changes in his EEG and modifying the
programming accordingly produced a kind of biofeedback. Gradually, like
Johnny
Ray, Jatich was able to move a flashing cursor to the middle of a projected
line. The goal was to have the computer search for distinct, recallable
brain-
wave patterns that could be used to control any number of devices that could

be connected to a chip.

Jatich says there was nothing portable about the equipment - he found the
electrode skullcap cumbersome and the whole system a bit rickety. "Cell
phones
down the hall at the hospital would cause the thing to go blank every once
in
a while." But the enterprise did deliver a breakthrough he hadn't
anticipated.

"When I got downstairs after the first couple of experiments," he says, "I
was
sitting outside, waiting for my ride, and it hit me. I had caused something
to
move just by using my mind alone. The tears streamed down my face, because
it
was the first time I had done that since I got injured." Jatich says he felt

like "a kid being handed keys to a car for the first time."

Going from manually controlled FES to brain implants that bypass the spinal
cord to produce muscle movement would represent a significant leap. But Ron
Triolo, a professor of orthopedics and biomedical engineering at Case
Western
and a clinician at the Cleveland FES Center, thinks this is possible. He
sees
this leap as the possible fulfillment of FES's many, often outsize, promises

for people with disabilities. The challenge is immense, but, as Triolo puts
it, "Failure is closer to success than doing nothing. I've seen some of the
preliminary work on cortical control and it's impressive. Clearly, it's
going
to pay off eventually."

Since Jatich's first implantable hand device was installed, the technology
for
nerve stimulation has advanced to the point where the reliable, long-lasting

electrodes in both of his hands are barely visible, require practically zero

maintenance, and have become more or less permanent parts of his body. For
the
last 15 years, he's used a shoulder joystick controller to move his right
hand. Controlling his left hand is an IJAT, or implantable joint angle
transducer, which employs a magnet and sensor attached to the bones of the
wrist. Slight movements trigger complex hand-grasping motions. The computer
mounted on the back of Jatich's wheelchair stores the software that helps
produce as many as five different motions, which he can specify depending on

whether he wants to hold a pencil and write or grasp a utensil and feed
himself - capabilities he would not otherwise have at all.

Over the years, Jatich has gone from being a person completely dependent on
others to having some degree of autonomy. His grasping ability means he can
use a computer and feed himself, among other simple tasks. In the past few
years, Jatich has been able to do some mechanical drawing, using his hand
devices along with commercially available computer-aided design systems.

Thinking about taking the next step - an implant that might allow him to
connect his brain, via computer, to his electrode-filled hands - excites
him.
"You could sure get a hell of a signal from the surface of the brain as
compared to the electrodes in that ugly skullcap," Jatich says. He speaks as

though he's talking about a science fair project and not the tissue under
his
own cranium. "I would have to think hard about it, but if they could deliver

on their promises, it would be great. I would do it in a minute."

Suddenly, million-dollar grants are being thrown around to investigate the
possibilities of direct interaction with the brain. While much of the study
is
geared toward finding ways to reopen avenues closed by massive paralysis, it

also raises the possibility of creating alternative brain outlets to the
world
in addition to the ones we were born with. The FDA won't allow it yet, but
there's no scientific barrier preventing some brave pioneer from adding a
new
ability - for instance, a brain-controlled wireless device to regulate
climate
and lighting in one's home. In November, British cybernetics professor Kevin

Warwick plans to have a chip implanted next to his arm's central nerve
bundle
so he can experiment with sending and receiving digital signals (see "
Cyborg
1.0," Wired 8.02, page 144).

Deep brain stimulation is the overarching term for the therapies in
development, and specific projects are under way to address severe nervous
system disorders like Parkinson's disease, TBI (traumatic brain injury), and

other locked-in syndromes. The NIH has embarked on an aggressive program to
develop cortical control devices as the first truly practical neuro-
prostheses. This is a kind of low-bandwidth alternative to the field of
spinal
cord research focused on repairing injured spinal tissue and restoring the
original brain-muscle connection.

Dubbed "the Cure" by its passionate supporters, savvy marketers, and
fundraisers, this vision of spinal cord repair has a much higher profile and

is far better financed than FES and other alternative-interface
explorations.
The Cure has Christopher Reeve as its cash-gushing poster boy. FES has Jim
Jatich. Cortical implant technology has Johnny Ray. Certainly, anyone who
wakes up with a spinal cord injury is inclined to hope for a cure above all
other options. But one would expect medical research strategies to be more
detached from the emotional trauma of disability. As someone who has lived
in
a wheelchair comfortably for a quarter century, it is hard to justify why
the
Cure would be so favored over its alternatives.

Rush-Presbyterian's Roy Bakay expresses some frustration that his efforts
directly compete with the Cure movement for funding. "We can do things for
people now, whereas spinal cord research isn't going to pay off for a very
long time, if at all. I'm not saying that spinal cord research shouldn't be
conducted, just that [deep-brain stimulation] may be a more immediate
solution
for getting the brain to interact with the outside world." Others report
that
Reeve's visibility has made it more difficult to find people willing to try
new technology involving surgery or implants. "They say they want to keep
their bodies in good shape for when the Cure happens," says Jatich, who
often
counsels people considering FES.

Reeve was injured in a 1995 horse-riding accident; he can't move anything
below his neck and needs assistance to breathe. Despite declaring shortly
after the accident that he would someday walk again, Reeve is not pro-Cure
to
the exclusion of all other options. He has carefully maintained that he
supports any endeavor that might help people with disabilities. He has muted

his personal predictions about walking again, though he is still dedicated
to
the Cure. The movement Reeve helped create represents those who believe the
body is the brain's best interface to the outside world. Certainly, there's
nothing on the market to give the fully functioning body any serious
competition. Yet for people without one, supplementing bodies with onboard
technology to increase functionality is a way around the wait for a full
cure.

"He claimed he had a way I could control a cursor and the muscles of my hand

just by thinking. I thought it was BS. You know, brain science."

It's a familiar trade-off: As every technology develops, there is the
tension
of using the interesting but cumbersome first-wave device versus waiting
until
the tech is small enough, convenient enough, or integrated enough with the
body to bother with it. This trade-off has been debated within the disabled
community for generations, and it is just starting to be reflected in the
broader culture.

The field with perhaps the best track record in dealing with complicated
brain-machine interfaces is communications technology for the sensory- and
voice-impaired. It's also the area in which the trade-offs between
functionality and ease of use are most critical. With computers, turning
text
into voice is considerably easier than making a device that operates with
the
ease and speed of speech.

"There is a real issue of gadget tolerance, and people have finite limits,"
says Frank DeRuyter, chief of speech pathology at Duke University Medical
Center and a leader in the field of augmented communication. "Our smart
systems need to be environmentally sensitive or they don't get used."
DeRuyter
has worked with all kinds of communications devices, from primitive boards -

little more than alphabets and pictures used by noncommunicators to slowly
construct sentences by pointing - to more sophisticated electronic speech-
synthesis devices. All have their own advantages and disadvantages, which
are
ignored at a designer's peril.

DeRuyter describes how designers can be locked into narrow functionality
traps
that keep them from seeing the world the way the disabled do. "Talking is a
portable communications system that enhances every other activity. We used
to
put some of our noncommunicators into the pool each day, and we could never
figure out why they hated it. Then we realized that by removing electronic
communications boards that couldn't tolerate water, their pool time was the
equivalent of being gagged. We designed some simple, waterproof alphabet
boards and the problem went away. Pool time became fun."

Michael B. Williams is an augmented communications technology user and a
disability rights activist from Berkeley, California. He relies on three
devices to communicate: two VOCAs (voice output communication aids,
basically
chip-controlled text-to-voice synthesizers) and a low-tech waterproof
alphabet
board. The board, he told me in an email, is there "for when California's
power goes out," and for "private thoughts in the shower." Williams' smaller

VOCA is a spell-and-speak device that is handy enough for dinner table
conversations. His largest and most advanced VOCA is "heavy and hard on the
knees," but has rapid word access that enables Williams to give public
speeches in a kind of partial-playback mode, which he has been doing for
years
now.

Diagnosed with cerebral palsy as a young child, Williams struggled with the
speech therapy recommended by medical and educational professionals to
enable
him to control his mouth and use his own voice. His eventual rejection of
this
mode of communication was a simple technology decision; the brain-machine
interface called speech is, in his case, seriously flawed. He describes his
voice as being "like used oatmeal," and he has instead acquired the tech to
live on his own terms, according to his personal specifications. When
Williams
gives speeches, his advanced VOCA offers the choice of 10 different
programmed
voices (he prefers the one called Huge Harry for himself). When he quotes
someone, he uses a different voice, and it sounds like two people are on
stage.

"This bit of electronic tomfoolery seems to wow audiences," he says in an
email, his sly showman's confidence coming through. So when you think about
Williams, don't think courageous crippled guy giving a speech. Think
puppetry,
ventriloquism, Stephen Hawking.

Williams says it's impossible to evaluate any technology on function alone.
For instance, he says the value of his ability to communicate is directly
related to his mobility. "Someone recently asked me, 'If you were given a
choice of having a voice or a power wheelchair, which would you choose?'
This
is a no-brainer for me. I would choose the power wheelchair. What would I do

with only a voice - sit at home and talk to the TV? Another thing I wouldn't

give up is my computer. With a computer and a modem I can get my thoughts,
such as they are, out to the world."

Frank DeRuyter says designers need to think in the broadest possible terms
when they approach human-interface technology. "We're just beginning to
realize the importance of integrating movement technology with
communications
tech. We see that a GPS device can powerfully increase the functionality of
a
communications board. When people roll their wheelchairs into a grocery
store,
the GPS will automatically change the board's stored phrases and icons into
ones relevant to shopping. Shifting context as you move - that's what the
brain does. Now we can do it, too."

"It's certainly true that the general population has glommed onto some
principles of assistive tech. Just roll down the street and observe the
folks
with wires dangling from their ears."

This idea of optimizing a personal brain-machine interface is as much an
issue
for engineers at Nokia, Motorola, and other manufacturers of wireless
technology as it is for people designing for the disabled. Companies need
people to actually buy and use their devices, not just gawk at them in
glossy
trade magazines. On a street in Manhattan last fall, it hit me: four people,

one intersection. One man with a cell phone and headset was talking calmly
and
loudly, oblivious to the rest of the world. Another had a cell phone handset

pressed to his head and was attempting to get a scrap of paper, one-handed,
from his briefcase. A woman was at the pay phone looking for a quarter. The
fourth person stood waiting for the light to change, looking at his
wristwatch. If the four were frozen at that intersection, how would future
paleontologists construe their fossilized differences? Four people, four
different capabilities, four distinct species. Five, if you count me. Man
with
wheelchair ... no cell phone.

"There is a calculus in this field that we have come to know from decades of

experience," says Ron Triolo of the Cleveland FES Center. "People don't want

to lose anything they already have, and that includes wasted time, as well
as
an arm or a leg. But if they can increase functionality without losing
anything, they want to do that.

"How we thought people would benefit from FES is different from what actual
users have told us," he continues. "For instance, we imagined that FES would

be of no value unless it was nearly invisible and provided a level of
function
comparable to the pre-injured state. We discovered we were talking from an
ivory tower. People enjoy the ability to make even the most rudimentary
physical motions and don't particularly care if those motions don't lead to
jobs or activities associated with their life pre-injury."

Triolo describes novel ways in which disabled people have taken
off-the-shelf
equipment and used it in sometimes alarming ways, well beyond the designer's

imagination. A man who uses his FES system to stand has improvised a way to
clumsily hop up and down stairs. A female FES user recently sent Triolo a
picture of herself standing, à la Titanic, on the bow of a boat under full
sail. "If she had gone into the water ..." He pauses to find words to convey

both his fear (of massive product liability, perhaps) and his admiration for

the woman's guts. In the end he can only say, "Well, you know."

In my case, projecting my independence as a collaboration between machine,
body, and brain is an important message, if difficult to convey. I can coast

flat out and slalom effortlessly around pedestrians, and produce equal
measures of awe and terror. No matter how skilled I am in my chair, people
often wonder why I don't use a motorized one. I love using a machine I never

have to read a manual to operate. Why can't they see the value of my ragged
optimizing strategies? Think Xtreme sports, hot-dogging.

There are also deep cultural factors that sometimes surprise and frustrate
designers of technology for the disabled. One of the first machine-to-brain
devices, the cochlear implant, was heralded as a miracle cure for some forms

of deafness when it was fully introduced in the 1990s. The electronic
device,
mounted inside the ear, works like FES on muscle tissue. In this case, the
electrodes, responding to sound, stimulate different regions of the cochlea
at
a rate equivalent to a 91K modem. The cochlea, in turn, sends signals to the

brain that can be processed as sound. The device requires training the brain

to decipher the implant's stimulus and does not replace or completely
restore
hearing. Many deaf people view the implant as a form of ethnic cleansing and

physical mutilation. The cochlear implant, according to opponents, is a
direct
confrontation to the shared experience of deafness, the language of signing,

and all of the hot-dogging improvisations deaf people have developed over
many
generations to function without hearing.

Brenda Battat is the deputy executive director of Self-Help for Hard of
Hearing People, a national organization in Bethesda, Maryland, that counsels

people who are considering traditional hearings aids and cochlear implants.
She believes opposition to the cochlear implant is moderating. Still, she
says, technology requires an investment of time and emotion that engineers
and
users often aren't aware of. "Whatever technology you use, you're still a
person with a hearing loss. When the battery breaks down, there is a moment
of
absolute panic. It's a very scary feeling." That feeling of dependence
relates
as much to the type A technoid having seizures over the dead batteries in
his
BlackBerry as it does to Johnny Ray adjusting to the imperfections of his
brain implant. Anyone using an assistive technology system expects it will
work every time, under a wide variety of conditions, without degrading any
of
their existing capabilities.

Perhaps the best example of a technology solution that interacts directly
with
the brain is the Ibot wheelchair, now in the final stage of prelaunch
testing
by Johnson & Johnson and the FDA. Designer Dean Kamen wanted to create a
transportation device that would have the equivalent functionality of
walking,
climbing stairs, standing upright, and all-terrain motion. To operate in
upright, two-wheel stand-up mode, the Ibot uses an onboard computer and a
system of miniaturized aviation-grade gyros to assess the center of gravity
and deliver a signal to high-speed motors. These turn the wheels accordingly

to compensate and keep the user from falling over.

My first impression of the machine was not positive. The Ibot is a
cumbersome,
complicated thing that makes you dread being stuck somewhere without a tool
kit. But watch the Ibot balancing, making little rocking motions to keep it
upright, and you feel as though you're in the presence of some humanoid
intelligence.

When Kamen began testing his chair with disabled users, he discovered an
eerie
and unanticipated brain-machine interface. "Each person we took up the
stairs
said, 'Great.' They said great when we took them through the sand and the
gravel and up the curb and down the curb. But when we stood them up and made

them eye level with another person, and they could feel what it was like to
balance, every single one of them started crying."

Kamen believes that people who use the Ibot in its two-wheel balancing mode
are literally feeling the experience of walking, even though the machine is
doing the work. "If you could get an MRI picture of the balance center of
the
brain of some person in a wheelchair who goes up on the Ibot's two wheels, I

bet you'd see some lights go on," he says. "I'm convinced the brain
remembers
balancing, and that's why people feel so much emotion."

The brain-body-machine interface doesn't seem to need the body as much as we

believe it does. We hybrids are part of a universal redrafting of the human
design specification.

I felt exactly that when I used the Ibot for the first time and stood
upright.
The chip was making the wheels move, but my brain's own sense of balance
seemed to instantly merge with the machine. Its decisions seemed to be mine.

No implants. No wires. It was truly extraordinary. Think FDR on a
skateboard.

This raises a fairly revolutionary point about brains and the physical
world.
Bodies are perhaps a somewhat arbitrary evolutionary solution to issues of
mobility and communication. By this argument, the brain has no particular
preference for any physical configuration as long as functionality can be
preserved.

Michael Williams believes that the disabled have helped humanity figure this

out in terms of technology. He thinks people are rapidly losing their fear
of
gadgets. "The greatest thing people with disabilities have done for the
general population is to make it safe to look weird. It's certainly true
that
the general population has glommed onto some principles of assistive tech.
Just roll down the street and observe the folks with wires dangling from
their
ears. Look at the TV commercials featuring guys with computerized eyewear."

The history of assistive technology for the disabled shows that people will
sacrifice traditional body image if they can have equivalent capabilities.
It's a profound lesson for designers and people who irrationally fear brain
implants. It perhaps has even more practical implications for people who are

waiting for a cure to restore their functions. The brain-body-machine
interface doesn't seem to need the body as much as we believe it does.

Think many different puppets ... same show.

For those open to the possibility, the definition of human includes a whole
range of biological-machine hybrids, of which I am only one. The ultimate
promise of brain-machine technology is to add functionality - enhanced
vision,
hearing, strength - to people without disabilities. There is nothing of a
technological nature to suggest that this can't happen, and in small but
significant ways it has already begun. The organic merging of machine and
body
is a theme of human adaptation that predates the digital age.

As I think about the quarter century I've spent in a wheelchair, there are
almost no traditional concepts to describe the experience. As I weave around

the obstructions of the world's low-bandwidth architecture, with its narrow
doors and badly placed steps, I find my journey to be less and less some
sentimental, stoic "go on with your life, brave boy" kind of thing and more
part of a universal redrafting of the human design specification. I am drawn

back to Michael Williams and his disarming motto: "The disabled have made it

OK to look weird." There is such wisdom and promise in that statement.

People with disabilities - who for much of human history died or were left
to
die - are now, due to medical technology, living full lives. As they do, the

definition of humanness has begun to widen. I remember encountering, on a
street corner in Kinshasa in the former Zaire, a young man with the very
same
spinal cord injury as my own, rolling around in a fabulous, canopied hand-
pedaled bike/wheelchair/street RV. He came up to me with a gleam of
admiration
for my chair and invited me to appreciate his solution to the brain-body
interface problem. We shared no common language, but he immediately
recognized
how seamlessly my body and chair merged. That machine-body integrity is
largely invisible to the people who notice only the medical/tragedy aspect
of
my experience. I could see how he had melded even more completely with his
chair - in fact, it was almost impossible to see where his body left off and

his welded-tube contraption began. It was clear he was grateful for my
admiration.

As time has passed, I am conscious of how little I miss specific functions
of
my pre-accident body, how little I even remember them in any concrete way. I

used to think this was some psychological salve to keep me from being
depressed over what has been a so-far irreversible injury. I have come to
believe that what is really going on is a much more interesting phenomenon.
My
brain has remapped my physical functions onto the physical world by using my

remaining nonparalyzed body, a variety of new muscle skills, tools,
reconfigured strategies for movement and other functions, and by making the
most of unforeseen advantages (good parking spaces, for instance). This is
something that has taken me years to learn.

My daughters have never known any other way of looking at me. As they grow
older, they will no doubt be introduced by people around them to the more
conventional way of thinking about their poor, injured, incapacitated daddy.
I
suspect they will see the flaws in this old way of thinking far more quickly

than their little friends who come though our house warily regarding the man

in the purple chair with wheels.

In a straightforward way that needs no psychological jargon to explain, my
former body simply doesn't exist anymore. Like Isaac Stern and his violin, I

am now part chair, with some capabilities that exceed my original
specifications.

There's a very old story about a puppet that worked so hard to live in the
real world, it eventually stopped being a puppet. The experience of
interacting in the world connected this wooden puppet to the humans around
him
to the point where he was indistinguishable from them. An unstated corollary

of the fable is that the humans were equally indistinguishable from the
wooden
puppet. I'm not lying.

Think Pinocchio. Think real boy.

John Hockenberry ( [log in to unmask])
 is a Dateline correspondent and author of A River Out of Eden (Doubleday).

Copyright © 1993-2001 The Condé Nast Publications Inc. All rights reserved.

Copyright © 1994-2001 Wired Digital, Inc. All rights reserved.


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