ABLEnews Extra

                    "A Roomful of Friends"

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by Thomas Forbes
    
Although she had been emotionally and physically battered for years,
Anna Gregerson didn't walk out on her husband until he threatened to
kill her. While trapped in that relationship, Gregerson felt too
humiliated and embarrassed to talk to anyone about what was happening.
Like many other victims of abuse, she had been isolated, her
self-esteem undermined. Once Gregerson was on her own, however, things
began to change. She started talking about the abuse and even helped
to set up a shelter for victims of rape and domestic violence. She
also joined the online world, connecting to Prodigy and discussing her
relationship problems with others.
   
Then last year Gregerson heard the 911 tapes of a terrified Nicole
Simpson being threatened by O.J. Simpson. Realizing that many women
would hear their own voices reflected in Nicole's pleas for help,
Gregerson was convinced that it was time to create an online
discussion group, where women in abusive relationships could find
support and information. She helped launch the Domestic Violence topic
on Prodigy's HomeLife Bulletin Board.

If numbers can tell the story, Gregerson's efforts have paid off. More
than 1,500 notes were posted during the first weeks that the service
was open. Lawyers and police officers participated, along with men who
are partners of abuse survivors and women who are suffering the
aftershocks of abuse that ended years before. Many messages also came
from women currently in abusive relationships, although not all of
them were aware of it. "I'm not sure that it's domestic violence," one
woman wrote, "but when he gets upset he does wave guns at me and the
kids."
   
By talking and listening to people who have faced similar situations,
Gregerson believes, women are empowered to seek help. And they are by
no means the only ones to find solace and support online. Indeed, the
Domestic Violence discussion group is just one of thousands of areas
in cyberspace where people share their most private thoughts in public
forums, where they talk about their obsessions and addictions, their
despair and disabilities. Offline, these individuals may be hindered
by shyness or fear, isolated by illness or geography. Online, they can
speak their hearts and minds, confessing dark thoughts or unbridled
hopes.
   
Support groups at their best represent cyberspace at its best. They
offer us, to paraphrase C.S. Lewis, the astonishing realization that
people exist who are very much like ourselves, no matter what physical
or metaphysical condition we bear.
   
Everywhere you turn in cyberspace--on the other commercial services,
on BBSs, on the Internet and in mailing lists and chats--there are
groups bringing people together. Some support groups are precisely
targeted. Usenet has a newsgroup for survivors of sexual abuse, for
example, as well as one for partners of survivors of sexual abuse. In
other areas, such as recovery discussion groups, overeaters, drug
addicts and children of alcoholics mingle and discuss 12-step
progress.
   
It's impossible to determine how many support groups exist online or
how many people use them. "There are literally thousands of support
groups on the net that aren't listed anywhere,'' says Danyaon
Coston-Clark, founder of Access Foundation for the Disabled, in
Malverne, N.Y. The foundation  is compiling a list of online addresses
for organizations offering resources for the handicapped.

Public groups come and go--but they mostly come as the diversity of
the online community continues to expand. The Attention Deficit
Disorder Forum on CompuServe had 7,000 people visit it from May 1993
to May 1994, its first year. By early September 1994, following some
press coverage, the number of users had swelled to 23,000, and 1,500
to 2,000 people were visiting each week.
   
The well-organized forums set up by commercial services sometimes
serve as jumping-off points to more specific support groups. Dr.
Michael Weinstein, a pediatrician in Nashua, N.H., started the Medical
RoundTable on GEnie in 1987 as a meeting place for health
professionals and people looking for information about illnesses.
Since then, GEnie users have formed dozens of support groups on health
issues. "All they have to do is post a notice on the RoundTable and
say, 'I have lupus, I have this or that. All of you with it, let's
meet here and talk,'" Weinstein explains.
   
Some people choose a more independent route to forming a support
group. Steve U., for instance, started The 12th Step Bulletin Board
System in his Connecticut home in 1991. "When I was first getting
sober," he says, "I found I had a lot of time on my hands, and
[Alcoholics Anonymous] meetings end at 10 p.m. My idea was to give
somebody like me a place to call into."
   
Most support groups, and certainly all of those under the aegis of the
commercial online services, try to create a warm and inviting
atmosphere in their discussions and real-time chats. "Very often
people will tell me 'I've never been able to say this to anyone,'"
says Pat Grauer, who moderates real-time conversations on the Voyager
Information Networks, an online service in Michigan.
   
The emotional support Grauer discusses can keep people from despair,
even in the face of a debilitating disease. Take the experience of
Barbara McMillen, for example. A longtime user of CompuServe, she
joined Prodigy in 1992 hoping that its friendly interface would entice
her husband and two sons to go online. She made a "navigational error"
one night and found herself in the midst of a discussion about a new
area dedicated to multiple sclerosis. McMillen was mesmerized by the
posts in the multiple sclerosis area. "They told their own stories,"
she writes. "And their lives started to sound like mine."
   
For months before, McMillen had been experiencing frightening
symptoms. Her legs would suddenly stop working, or she'd get dizzy.
Her doctor was baffled. She had a sinking feeling that she would die
and nobody would know what had killed her. Finally, the MRI results
confirmed what she had surmised after two months of lurking on the MS
board and discovering how capricious and difficult to diagnose MS can
be. She smiled knowingly as her doctor told her the diagnosis.
   
McMillen gravitated back to CompuServe, where a multiple sclerosis
discussion group also had formed. As her disease became a nightmare of
symptoms and side effects due to treatments, she began to participate
in the discussions. "People responded," she writes. "Encouraged me.
Reached out to me."
   
She learned that even MSers who communicate by pecking keys with
pencils held in their mouths have vital lives. McMillen, who last year
took disability retirement as an associate professor of English and
director of the creative writing program at Bowling Green State
University in Ohio, says that her social life now consists of her
family, a computer forum, and her correspondence with the members of
the MS board. "In many ways, not to overly dramatize, I feel the
adjustments I've made are because the CompuServe MSers understand the
brutality of MS as well as the beauty," she writes. "Without
CompuServe I would not know, personally, one other MSer."
   
The trust that seems to grow among the members of a support group
mirrors that found in face-to-face groups. Although anonymity could be
accomplished easily online, it isn't prevalent. Most 12-steppers will
use a screen name or first name in accordance with AA's 12th
Tradition, but posters to many support groups--particularly in
non-recovery areas or in groups that are moderated--rely on the
integrity of fellow members to keep whatever is written for the group
within that group. "Although people initially feel more comfortable
because of the anonymity, after a while they want people to know who
they are," says H. Travis Fishbein, host of America Online's Autism
Self-Help Group. "They feel that they are getting support from a
roomful of friends."
   
Although some people cry censorship, system operators in moderated
groups and BBSs try to keep conversational threads civil and
on-target. "It is up to the [moderator] to lead the tenor in a forum
or section," writes Merle Spector, section leader of both the multiple
sclerosis and learning disabilities forums on CompuServe.
   
Indeed, maintaining a safe and civil haven, particularly for people
who are emotionally vulnerable, can be critical, according to Avodah
Offit, a New York psychiatrist whose recent novel, Virtual Love, is
structured as an e-mail correspondence between two psychiatrists.
"There are psychological dangers such as loss of self-esteem from
being attacked, or from receiving inadequate or inaccurate counsel,"
Offit explains.
      
As it turns out, the online world may be the perfect venue for
comparing notes from several sides of the same problem or issue. For
example, adoptive parents, adoptees and birth mothers all participate
in discussions in the Adoption Forum on America Online. Last summer,
two adoptees who participate in the AOL forum discovered that they
were born in the same hospital. One of the women also participates in
the Genealogy Forum on CompuServe. An adoption search consultant who
is the section leader there then discovered that the two women shared
the same birth mother. She tracked down a telephone number for the
woman. Last July, the younger sister dialed the number on one of her
phone lines. On a second line, she opened a real-time chat with her
newly discovered older sister.
 
The suspected birth mother, hearing the younger sister's accent,
almost immediately asked, "Are you from New York?" "Yes," she replied.
"Are you my daughter?" she asked. The older sister has saved a log of
the chat on America Online:
   
Younger sister: she is thrilled
   
Younger sister: crying
 
Older sister: wow!! :)
  
Younger sister: she is happy
  
Older sister: :)
   
Ironically, the birth mother also had an account on America Online.
That evening, the three women chatted online for three hours. The
sisters learned why their mother gave them up for adoption, and that
she had never forgotten them.
   
Such stories are happening every day in online support groups. They
are stories in which people touch other people intimately and
instantaneously. They are stories that touch lurkers, too, and help us
to realize that we are all tentatively feeling our way around the same
metaphysical web that is cyberspace.

(Ellipses have been omitted to facilitate reading.)
   
[Circle of Hope, Net Guide, January 1995]


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