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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 (john.hockenberry@nbc.com) is
a Dateline correspondent and author of A River Out
of Eden (Doubleday).
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