Message-Id: <3.0.1.32.19970513012248.0069f118@osf1.gmu.edu>
Date: Tue, 13 May 1997 01:22:48 -0400
To: socgrad@csf.colorado.edu
From: "Jeanne A.B. Calabro" <jcalabro@osf1.gmu.edu>
Subject: Re: Virtual Identities and Communities ...refs ???
Cc: Ocean <BJR49@student.canterbury.ac.nz>
In-Reply-To: <3373FE7F.1FA5@csc.canterbury.ac.nz>
References: <199705092008.OAA23671@csf.Colorado.EDU>
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This may not help at all, but it may. I did some research, not on virtual
communities, but making use of a virtual community, a listserv used by
parents of children with Down Syndrome as well as professionals,
physicians, therapists, journalists, teachers, who served these children,
many of whom also were parents of children with Downs Syndrome. My project
was on the use of cosmetic surgery in these children, a quite controversial
practice with uncertain therapeutic benefits that has been little
researched, although it is very popular and common in Germany and Israel
especially, both countries with authoritarian medical systems, and less
common, although still done, in Australia, Canada and the United States.
Anyway, since the group of parents who have had their children undergo this
surgery is not large and is widely dispersed, and because it is hard to get
a parent to admit that they had this surgery done on their child because of
the frequent criticism (it's almost as bad as admitting that you committed
infanticide in many circles in this country), it is hard to get any but a
very anecdotal and idiosyncratic study going on this. However, through the
internet, where people feel anonymity and can construct identities, I
ironically found a great degree of honesty in the many responses I
received. Thus much information that cannot be accessed by traditional
methods or means, can often be accessed via the internet. There are of
course several limitations and considerations that must be made which do
not exist with face-to-face interviews, but there are ways to confirm and
validate information, and also ways  to compare if perhaps two or three
cases are available to be interviewed face-to-face. 
	The honesty and helpfulness I encountered was amazing. I had to be very
careful not to disclose my research purpose, hypothesis, or personal
position or opinions. I just asked for people to give me the facts and the
story in a directed series of questions. Perhaps it is easier to actually
imagine and construct a community in virual reality that one really longs
for in reality. Perhaps the sense of vulnerability, competition and anxiety
are less in virtual reality. I do not know, but I do know that it is a
great way for people to find a voice when they are afraid of speaking in
other contexts, and so a lot of people overcome the silence that is either
self-imposed or imposed because of some marginal status.
	A lot of people worry about the current self-selection of membership in
these communities, because there is a threshold of skills and education and
economics in order to have the means to access the internet. After my
research, however, I am really excited about the potential for the internet
to overcome many of the inequalities experienced by marginal populations in
terms of having voice, cultural authority, and access, that is, once
computers are more readily available to all. In my study, I had one
respondent who was a single mother who did exotic dancing at night to
support her son with Down Syndrome. I got people of all ages and
backgrounds from physicians to elderly couples to members of a marginal
religious group. It is also true that people with severe disabilities who
are often unable, because of chronic illness or lack of an accessible
environment, to access many community settings, activities and forums, can
access virtual communities quite well. There are talking computers, visible
signals for the deaf, dictation programs for those who cannot use the
keyboard as well as special adaptive keyboards and other sophisticated
input devices. Mobility impairments are seamlessly accommodated by virtual
communities.
	I had a mentor in my previous program, Thomasina Borkman, who was the
President of the International Organization on Research on Self-Help
Groups. There is not much research at all on self-help groups on the
internet, although the number of just AIDS self-help groups on the internet
is staggering by itself, not even including other kinds of services
accessed on the internet specifically designed to serve populations with
AIDS. I would suggest that marninal groups are more likely to form virtual
communities, and also people with impaired immunity, chronic illness, or
limiting disabilities are also more likely to form virtual communities. The
internet may also provide a unique and advantageous medium for accessing
these populations, although it poses some risks to confidentiality because
of security concerns. Anyway, I just thought I would tell you my experience
with this virtual medium, and maybe you would have a light bulb go off at
some point concerning an area of interest. If you have any questions,
please e-mail me.
Jeanne Calabro
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Jeanne A.B. Calabro			Home Phone:  703/450-5460
104 Norwood Place			E-mail:      jcalabro@osf1.gmu.edu
Sterling, Virginia 20164-8503	Affiliation: Brandeis University
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"Sociology changes the world." Personal opinion
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