What a wonderful Article written by Dan Woog. This shows what wonderful progress can be made for children with Cochlear Implants.
In 1987 Melody James and Steve Parton's 22-month-old daughter Caitlin almost
died. She recovered from her illness -- but suffered a profound hearing
loss.
The family's life turned upside down. Suddenly the couple had to raise a
deaf child. Among their many challenges was finding the most effective way
to help Caitlin communicate with the world.
The League for the Hard of Hearing (now called the Center for Hearing and
Communication) helped. They educated the Partons, mentored them -- and
identified Caitlin as a candidate for a cutting-edge technology called a
cochlear implant.
In that operation, a string of tiny electrodes is placed in the ear.
Electrical messages stimulate nerves to the brain -- something the inner
ear's damaged hair cells cannot do. Caitlin would be the youngest child to
have a cochlear implant. There were no studies to examine, no other families
to talk to.
To their surprise, the Partons ran into a buzzsaw of controversy. A segment
of the deaf community adamantly opposed cochlear implants for children and
teenagers. They called it "brain surgery." They decried it as a technique to
"fix" deafness -- a condition hearing people viewed as an illness or
pathology. The faction argued that deafness is not a disability or
infirmity; rather, they argued, the deaf culture is vibrant. They said that
for adults to force an operation on a child was ethically unjustifiable.
But, says James, "We're artists. We believe in books, reading, access to
information. We wanted to give that world to her. People who grow up with
ASL (American Sign Language) as their primary language read at a third or
fourth grade level. Reading poorly limits your opportunities in life."
ASL, James says, is "beautiful. But it doesn't compute to spoken or written
English. The syntaxes are different. It's hard to learn both
simultaneously."
And, she notes, "it's unrealistic to think that everyone in the world signs.
If you rely primarily on signing, you're limited in the number of people you
can communicate with."
Some deaf people said that parents who wanted a cochlear implant for a
youngster were no different than black parents choosing an operation to make
their child white.
James disagrees. A more appropriate analogy, she says, is of people who
prohibited black children from learning to read.
James -- who graduated from Staples in 1964 -- was shaken by the vehemence
of some in the deaf community. "Growing up in Westport, I was involved in a
lot of causes," she says. "The town and students were very aware, and very
active in social justice causes. I believed everyone should have access to
opportunities."
The debate over cochlear implants in children "triggered a lot of emotions,"
she admits. "We didn't want Caitlin to be the only one. We wanted other
parents to have the ability to choose this extraordinary device, capable of
delivering more sound at an age when children are so capable of learning and
developing. That was a choice we made -- and a risk we took."
Caitlin got her implant in January 1988. It took two more years before the
Food and Drug Administration approved it for youngsters. Since then, nearly
200,000 people worldwide have received cochlear implants -- including some
toddlers less than a year old. Thousands of children with the devices are
now doing "amazing things," James says.
Caitlin has certainly prospered. She was mainstreamed throughout her
Westport educational career. She graduated from Staples in 2003, having
served as editor-in-chief of the school newspaper, inklings. She played
piano for 12 years, and studied French -- "all very difficult things for
profoundly deaf students," James says.
Four years later -- after graduating from the University of Chicago, and
interning for Senator Tom Harkin of Iowa -- Caitlin was hired as a paralegal
for a leading Washington, D.C. civil rights law firm. She's now studying for
her LSATs, and hopes for a career in public policy.
Caitlin's deafness, James says, is "part of her identity. She's fluent in
ASL -- but it's not her first language. We taught her to listen -- to use as
much sound as she could get in, to develop as natural a spoken English
language as was possible.
"Caitlin is a very confident young woman," her mother continues. "She
functions in the signing world, and has many deaf friends with cochlear
implants. They sign, they talk -- they've accomplished great things.
All that took "incredibly hard work on Caitlin's part," James says. It also
changed her parents' lives. "We put a lot of energy and creativity into it.
It was a full family effort."
Part of their effort involved spreading awareness about cochlear implants.
On Caitlin's 10th birthday, the family addressed an international convention
on deaf education. "People from South Africa and Croatia swarmed around
her," James recalls. "She was a real ambassador."
Ed Bradley did a piece -- "Caitlin's Story" -- that won an Emmy for 60
Minutes. It was later shown to members of the British Parliament.
James and Parton have day jobs -- she is a teaching artist for the Westport
Country Playhouse and teaches theater at Housatonic Community College; he is
a portrait artist, educator and illustrator -- but they continue to advocate
for people with hearing loss. For nine years, James directed the Resource
Center for Public Education at the Center for Hearing and Communication.
For their long work as advocates and educators for the needs of people with
hearing loss, the Parton family will be honored this coming Tuesday by the
CHH. They'll receive the Edward Nitchie Award -- named for the
organization's founder, a man who himself was a pioneer for deaf people.
The award is particularly significant, because this is the 100th anniversary
of the CHH. The group's tagline reads: "Celebrating 100 Years ... Hear for
the Future."
The speeches honoring the Partons will be meaningful, I'm sure. But even the
most eloquent words will never compare to hearing their daughter speak every
day, about anything and everything.
It's music to Melody James' ears.
Dan Woog is a Westport writer. His blog is www.danwoog06880.com; his e-mail
is dwoog@optonline.net.
