Tuesday, 5/13/97 Ill, disabled children invited to become
Convomaniacs INTERNET: Apple Computer project offers connections,
support
By Peggy Shen Daily Bruin Contributor Being sick does not have
to be all that bad anymore, especially if you are a Convomaniac.
Last year, Apple Computer launched Convomania, a project that
includes a fun-filled Web site and a network of "Convomaniacs,"
seriously ill or disabled children who are using the Internet to
connect with other kids and share their experiences. The UCLA
Children’s Hospital was one of nine sites chosen to test the
Convomania pilot program. As one part of the project, specialists
at the Child Life Child Development Program at UCLA created a
Convomania room, where kids in the hospital can go on line. "The
kids go on the Web site, and chat rooms," said Hilary Gan, one of
the site coordinators of the Convomania project at UCLA. "They
e-mail one another and provide each other with a lot of support,"
added Sue Fallgren, the other site coordinator. In addition, Child
Life created a newspaper project using the Convomania program,
called the "Pediatric Press." "The pilot project gave us and the
kids the opportunity to make their own newspaper," said Gan, a
child development specialist. Convomaniacs can write about
"whatever they want," said Gan, and they are encouraged to submit
articles, photos and artwork of a wide variety of topics. Pediatric
Press is on its fourth issue and Gan said she hopes to get the
newspaper on line soon. Pediatric Press is posted in outpatient
facilities and issued to all pediatric patients in the hospitals
and to many of the Convomaniacs themselves, especially the
"Outposters." The selection of the Outposters is probably the most
important part of the Convomania pilot program. These are children
designated at each of the test sites to be major contributors. Five
children who had been in the UCLA Children’s hospital were chosen
to be Outposters. "Apple has been generous enough to loan computers
to these kids," said Gan, so they could have access to Convomania
in their own homes. "The reason we decided to have Outposters was
that we wanted to have leaders giving us advice," said Mark Kleid,
program manager of Team Convomania at Apple Computer. "Convomania
is made by these kids," he said. According to Riccardo King, one of
the Outposters at UCLA, these kids are ones who "usually don’t get
to socialize or get to be around each other enough or who don’t go
to school." King himself is in eighth grade and attends home school
due to chronic asthma and vocal cord disfunction. Kleid presented
another picture of kids who would also find Convomania comforting.
According to Kleid, "a kid who might not have hair, a kid with
burns or a kid using a wheelchair for the first time," might enjoy
Convomania because of the anonymity. In fact, when some of these
kids first meet each other, they occasionally freeze up, which
proves the effectiveness of this style of connecting, Kleid said.
"This medium was well suited to kids opening up," he said. King
said he finds Convomania very freeing, "a place where you don’t
have to be afraid to just let go." This in turn has led to many
friendships, according to King. "Convomania has done a lot for me,"
King said. "I get home, check my e-mail and see all my friends. "It
makes you feel a lot better when you are sick and stuff," he added.
Lucia Monarca, another Outposter at UCLA who had a liver
transplant, echoes King’s sentiments. "You always think it is more
like a comfort to know you are not the only one," said Monarca, a
senior in Schurr High School. With approximately 30 Outposters
across the country, more Convomaniacs coming on line, and plans to
expand the program, King and Monarca are definitely not alone. "The
next step is how to have Convomania grow and involve more people,"
said Gan. At the same time, from the child’s perspective, another
consideration is how to keep the program unique and how to keep it
special, she added. Monarca discussed one of her fears about the
expansion of the program. "Some people thought that sometimes you
don’t know the people who go on line, so you don’t want to talk
about your illness," she said. King also expressed concern about
how much more work the Outposters would have, as they receive
numerous e-mail messages daily. There can be up to 50 messages a
day, King said. So much activity and messages on the computer are
evidence that Convomania is living up to its name. "We were going
for basic connection between people, which is conversation," Kleid
said. "Mania is for enthusiasm," he added, explaining the name
Convomania. Monarca, 18, came to the same conclusion. "I would say
"convo" is for conversation – to communicate with other people.
There is always someone there." Related Links: Convomania