ABLEnews Extra

             Self-Help, Cyber-Style

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To her Rockland County, NY, hamlet, she is Judith Engelhardt, a wife,
a mother and an electrologist at a local beauty salon. But to the much
larger community of computer users, she is Electrozap, a member of an
on-line menopause support group that meets twice a week  in a fast,
furious and silent discussion about estrogen therapy, good iron
sources, and mood swings.
   
"Our mothers went through menopause quietly, but knowing other women
are experiencing the same thing validates what I'm going through,"
said Ms. Engelhardt, 50, of Nanuet.
   
Ms. Engelhardt has joined legions of Americans who in recent years
have launched the self-help movement into cyberspace.
   
With the proliferation of personal computers and on-line services that
connect millions worldwide, computer screens are beginning to
supplement, and in some cases supplant, the church basement as
self-help venue of choice.
   
Members of support groups traditionally forge relationships over
coffee and conversation. Now participants in on-line 12-step programs
like Alcoholics Anonymous or Overeaters Anonymous may never know a
computer colleague's first name, just a catchy handle, much less see a
face.
   
There are hundreds of live, or real time, support groups sharing
intimacies and swapping advice on line for problems ranging from
chronic fatigue syndrome to cancer, from the trials of widowhood to
multiple personality disorder.
   
Messages are zapped back and forth between anywhere from 2 to 20
people. Sometimes the chat focuses on one topic; other times it is
like a big cocktail party in which several conversations can be heard,
or read, at once.
   
The limits of such digital self-help are manifold, and few people
believe it can ever substitute for real therapy. And while some worry
that being on line can become an addiction in itself or perpetuate
misleading medical information, most on-line support groups have been
welcomed by mental health professionals.

"It opens the door to a tremendous expansion of self-help," said Dr.
Frank Riessman, director of the National Self-Help Clearinghouse, a
nonprofit organization in New York City that helps people find and
form support groups. "It's a very positive development for people who
are isolated, disabled or living in rural areas and with rare
disorders."
   
Electronic self-help can also benefit those who are simply pressed for
time. John M., a New York state employee in Orange County, used to be
away from his family four nights a week at Alcoholics Anonymous
meetings. But through CompuServe, a leading commercial on-line
service, he now "attends" two meetings a week from home.
   
"This means I can spend more time with my children," said John M.,
speaking on condition that his full name not be used, in keeping with
the AA tradition of anonymity. "It's one of the reasons I got on
line."
   
Still, he says, broadcasting innermost thoughts over the information
superhighway just is not the same as a face-to-face meeting. Efforts
are made to compensate for the medium's physical remoteness: a "nod"
or "grin" interjected during a moving testimonial, even a visual hug
by typing a name and surrounding it with several sets of parentheses.
   
"I don't think this could ever be a substitute for my in-person
meetings," John M. said. "Words just seem more sensitive when they
come from the heart and out the mouth. The whole thing moves too
slowly because you can talk a lot faster than you can type."
   
Yet there is a certain irresistibility to the support groups. Gaining
access to them on line is fairly effortless, and there is an
instantaneous union of people, from Hartford to Honolulu, with the
same problems. For eavesdroppers who do not want to participate, or
lurkers, as they are called, the digital landscape is especially
fertile.
   
Members of one group on the America Online service would seem to have
no business talking via computer but can not seem to stay away: they
suffer from repetitive stress injury.
   
According to Alice Goins, who founded the group, most of the 100
regulars developed tendinitis or carpal tunnel syndrome from typing on
a computer.
   
"It's funny because none of us is supposed to be typing, but we'll
take our Darvocet and talk for an hour," said Mrs. Goins, a resident
of Morrisville, Vt. For each weekly session, she chooses a different
topic for discussion, such as medications, workers' compensation, and
feelings of guilt.
   
While America Online and CompuServe have for years offered live
conversation, or "chat groups," the third big national on-line
service, Prodigy, added that feature only last October.
   
In January, the company unveiled a "medical support chat area," which
consists of a dozen "rooms" that people can wander into 24 hours a day
to discuss a particular subject, like care giving, cancer support,
agoraphobia, addictions or chronic fatigue syndrome.
   
Just as popular as the live support groups are the bulletin
boards--the backbone of on-line services--where permanent messages are
posted. There, questions are asked and then answered minutes, hours or
days later. People can share their experiences and read those of
others in a more leisurely fashion than is possible during the
rapid-fire live discussions.
   
"The message sections are really self-help groups in slow motion,"
said Ed Madara, director of the New Jersey Self-Help Clearinghouse, a
nonprofit group. "The messages tend to be much richer because there's
no rush to respond."
   
Through the Internet and many small, noncommercial bulletin board
services, such as the Disabilities Electronic Network in New Jersey,
computer users can tap into a galaxy of posted messages.
   
One growing concern for people who have wrestled with addictions is
that they are getting hooked on the pleasures of prowling through
cyberspace. A partly tongue-in-cheek group called America Online
Anonymous, which has yet to assemble for a live chat, has posted
several dozen messages about its members' addiction to the service.
   
Martyn Moore, a homemaker from Portland, Ore., and a participant in a
support group on attention deficit disorder, captured the service's
powerful pull, and the new group's conundrum, in a recent posting:
   
"I am a recovering addict-alcoholic with almost seven years clean but
this has grabbed me like a demon. The problem I see is if we started
an America Online Anonymous group, would it be on the computer?
Wouldn't that be like serving cocktails at an AA meeting?"
   
Some health professionals have criticized on-line services for
functioning as repositories of erroneous information and bad advice.

But others say the danger is offset by the vigilance of on-line
members, some of them doctors and researchers, who pounce on
inaccurate messages.
   
"If there is a potential for harm, it's that the rush for the very
latest treatment can sometimes result in something being overly
hyped," said Dr. Zebulon Taintor, chairman of the information services
committee of the American Psychiatric Association. "Rumors can spread,
but corrections can spread just as quickly."
   
To keep up with the latest developments in diabetes, David Yolleck,
41, a lawyer from Maplewood, N.J., has relied on CompuServe's diabetes
forum as much as on his own doctor. The father of a diabetic
6-year-old and himself a diabetic, Yolleck says he can browse medical
libraries, interact with experts and, in live on-line support groups
three nights a week, chat with fellow diabetics.
   
"As the parent of a diabetic child, I need to know as much as I can
about current treatments because decisions have to be made on a
continual basis," he said. "This is a tremendous resource."
   
The on-line support groups are not meant to replace face-to-face
groups, self-help specialists say. For some people, however, like the
28-year-old woman from Hartford County, Conn., who has attention
deficit disorder, the electronic groups are far less threatening.
   
"I tend to clam up in a group of people," she said, identifying
herself only by her computer name, Lilalou. "This is easier for me
because I'm somewhat removed. I can just click off and I'm gone."
  
[Members of Self-Help Groups Flock to Cyberspace, New York Times,
March 22, 1995]
   
ABLEnews Editor's Note:  ABLEnews salutes the efforts of self-help
                         advocates (among which can be counted our own
                         advocacy network, CURE). Our disability/medical
                         message echo is carried by a number of
                         self-help BBSs, including the DEN--cited in
                         this article. We invite your participation.

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