Perspectives - Vol. 3, No. 2 - The Mutual-Aid Self-Help Online Revolution

The value of online information was first made clear to us over 12 years ago, when the local fire marshal told us that our VISTA volunteer, Maria, who used a motorized wheelchair, could no longer work in our third floor office. We were told that she needed to be able to exit the building, without using the elevator, within the first three minutes of the next fire drill. We posted a message in the disability discussion section on CompuServe at 6.PM. By 11 PM, we had received three suggestions, including one on where to purchase an inexpensive canvas hammock with handholds, tailored to fit into a wheelchair and quickly transport the occupant out of it. At the very next drill, to the surprise of the fire marshal, Maria was outside within two minutes.

Another example of Internet power and speed is the increased globalization of online mutual help. The webmaster and list manager for the self-help group JACS (Jewish Alcoholics Chemically dependent persons) describes how they "received an e-mail communication from a woman in an AA online meeting. Her list had a correspondent in Israel, who had stopped drinking 30 days prior, was not sure she was an alcoholic, was sure she was seriously suicidal, and didn't think she could find AA where she lived, in Haifa. We put it on our list, our Israeli members organized themselves to get the info, and within four hours, she had calls from AA members in Israel and the information on where the AA meeting was in Haifa. She recently wrote that she had six months sobriety in AA."

The growth of self-help groups has always been based on their special ability to meet people's needs for peer support and practical information. While the vast majority of mutual aid groups continue to provide help through face-to-face groups in meeting rooms across the world, more and more people are finding it easier and more convenient to have their needs met through participation in online support networks. These online mutual help groups operate on message boards, newsgroups, and bulletin boards, and through chat groups, discussion mailing lists, interactive Web sites, and similar online media.

It has become impossible to count the total number of existing online mutual help groups, especially since an ever increasing number of them are holding closed chat meetings that are not publicized. Yet, the number of both online mutual help networks and people participating in online "groups" is increasing dramatically. For example, the Diabetes Forum on CompuServe, run by and for persons with diabetes, had approximately 40,000 members participate between 1990 and early 1996. But, just in the past year, an additional 25,000 new members have joined. Despite the demise of Apple Computer's e-world online service, leaders of its "Transformations" forum recovery groups moved their meetings over to one Web site that now has expanded to over 130 different message boards. At St. john's University, one computer server is home for over 450 listserv discussion groups, with 112,000 subscribers who send more than 630,000 messages a day, according to Dr. Bob Zenhausern of the Psychology Department who helped most of these groups start. And Dr. Allen Douma, in Congressional testimony, stated that the Better Health and Medical Network on America Online (AOL) hosts over 400 live self-help groups each month and has message boards on which over half a million messages have been posted.

Groups are growing online for the same reason that traditional face-to-face (known online as F2F) groups have grown-they are meeting unmet needs. Samantha Scolamiero started the Brain Tumor listserv after the local brain tumor support group rejected her because they dealt only with cancerous tumors. Dave Groves started the Diabetes Forum on CompuServe because his experience with hospital-run groups was that they usually amounted to fairly stern lectures that provided far too little attention to discussions of what it meant to be a diabetic.

"GrannyBarb," a leukemia survivor who maintains a resource-filled Web site and manages several cancer discussion lists, described her reasons for becoming involved: "When I was first diagnosed, I immediately got on the Web and went searching. Fortunately for me, I found Cancer-L, the grand old lady of the cancer lists. That hooked me into CancerNet via e-mail, because 1-800-4 CANCER was absolutely unhelpful in the extreme. All they wanted to know was what stage I was in, and all I needed was some information. I've stopped telling people to call that number, because they're consistently lousy in hearing what people need from them. They're too busy filling out their forms."

"I truly don't believe that I'd have kept my equanimity had I not found online support, because I certainly didn't relate to the two support groups I visited at local hospitals, and I couldn't connect with the local Leukemia Society support group, since I taught a class the night it met. The online support groups have provided me with information that I wouldn't have had any other way. They have provided me with unstinting support and have given me a richness of friendship worldwide. I don't know what color, educational level, or economic status my friends are, since I haven't any idea who they are or what they do for a living. What they do provide is an indescribable richness in their willingness to share information, go search for me if I'm feeling too ill to do it myself, to track down the newest technique, chemo, treatment protocol. They'll share their MD's names and recommendations so I know who to contact at a given hospital, and they'll go out of their way to make sure that the information they share is as correct as they can get it."

A key feature of mutual help groups has been the ability of any member to offer help and understanding to others. Self-help groups are thriving in the new telecommunities, where it is the common culture and the ability of any user to become a resource provider, offering information, support or computer files to others. Many people who were previously unable to attend traditional face-to-face self-help groups are among those now participating in online groups. This includes those without local groups or without transportation, those with uncommon conditions or rare illnesses, those with previously limiting physical disabilities, patients in hospitals or in bed at home, and caregivers with round-the-clock responsibilities. Groups, for example, specifically for the shy, as well as for those with severe agoraphobia, now meet regularly on all the major commercial services.

For over a decade, many maverick members of some national and international self-help groups were among the first to establish online self-help meetings. It has only been within the last two years that most self-help group headquarters have finally developed their own online presence. While their involvement will help increase online use, their online group meetings are only a fraction of the total number of online groups.

The growth of online systems has also been aided by the declining costs of more powerful computers that are easier to use for online access. This latter trend will continue. Tom Koch, author of The Message is the Medium, posits that the popular acceptance of online technologies is driven not by the medium's attraction, but by the quality and content of the information and messages that it allows users to send and receive.

The search for "a sense of community" continues to be an enduring part of American society. But as Robert Wuthnow has pointed out, in Sharing the Journey, "Community is no longer something we are born into. It is now something we must choose." It is more easily found, chosen, or started online. As an example, Danny M. found support in the Disabilities Forum on CompuServe. He continues to participate because "when I suddenly became disabled due to a stroke, I sought out this Forum and found many friends, one in particular, who helped me 'adjust' to the physical and mental aspects of 'being disabled.' This Forum was a lifeline for me, as I became isolated socially after leaving my job because of the stroke. I could not have coped without all the wonderful people in this Forum and all the helpful support and information. Almost four years later, I still seek out support here and try to help others." .

Peer support has long been a key value in F2F groups, and online communication enhances this Peer equality. In communicating with other people online, there are no signs of social status, age, dress, weight, race, disabilities, or other distinctions. People are valued for the quality of their thoughts and feelings, as expressed in their communications. Online anonymity makes self-help group members more comfortable in sharing sensitive or potentially embarrassing information. At the same time, it is also easier to check out an online group. One need not get dressed up to attend a meeting from home, while the "doorway out" is always just a mouse click away.

These support forums, bulletin boards, newsgroups, and mailing lists are available 24 hours per day. Here, self-help group members usually find positive role models who encourage and inspire group members to responsible action and further exploration of online tools, assessments, archives, and other resources.

The availability of online networks is expanding the variety of mutual help communities as new types of groups are developing. Survivors of traumatic car accidents submit their stories and e-mail addresses for posting as part of the Car Accident Emotional Recovery Circle Web site, while Single Disabled Dads share their experiences in their own section of the disabilities Message Center on AOL. Massachusetts General Hospital provides a Neurology Chat Rooms Web site for the discussion of disorders like Thoraic Outlet Syndrome or Norrie Disease or 37 other neurological, conditions. While no F2F group yet exists for victims of stalkers, The Stalking Resource Center (from The National Center for Victims of Crime) offers an information clearinghouse, website resources and phone support.

The value of the Internet for networking and the development of new self-help communities has been especially fruitful for those individuals and families dealing with rare disorders. For example, Vicki Machado, who was "a beginner" in using computers, started the Kawasaki Families' Network after finally finding one other mother of a child with this rare inflammatory illness on the Internet. Within a year, the support network has grown to over 150 families who share online newsletters and a correspondence network, and have attracted several medical professionals to their Web site to provide consultation and answer questions. Other rare disorder groups report that their new member referrals have doubled or tripled after they have established a Web site.

Self-help groups are well known for their ability to pool their members' experiences, knowledge, and practical information, while tapping professional expertise, to meet their members' needs. Finding information on the Internet has been compared to "trying to take a drink from a fire hydrant." But online self-help network members are constantly tracking down the resources that are being stored there, as evidenced by the many "hotlinks" that can be found at most of their Web sites. In many cases, extensive library files are available for free downloading. Frequently added to these libraries are summaries or full text transcripts of both especially helpful message threads and/or online meetings that are archived and referenced for the use of other members. Databases and other information sources abound, both on the Internet and on the commercial services. And the latest search engines make it easy to search the World Wide Web.

Many online self-help networks attract or recruit professionals to serve as guest speakers and resource persons, or to provide input, training, consuItation, answers to members' questions, or a review of group materials. Yet the learning is often two way. As one psychotherapist put it: "I have been using online services for a few years now, and have met not only other clinicians, but wonderful people who are looking for help with their ADD (attention deficit disorder) related problems. Here, people talk and share information that one cannot find in textbooks or classrooms. They are personal stories of everyday struggles. By listening to them, I've learned a great deal that has helped me in my private practice. It's given me a special empathy as well as broadened my knowledge base in this particular area."

In Health Online, Tom Ferguson points out how online systems are beginning to make the "grand data of professional medicine accessible to everyone." Lay persons will increasingly have access to most of the same information "that professionals rely upon." Ferguson sees this as "the medical equivalent of the removal of the 'Berlin Wall' that has traditionally separated lay health care from professional medicine."

The major baffler to the use of online support networks is the current lack of universal access to them. While the federal government previously has recognized its role to provide communication services, from the postal service policy of rural free delivery to the concept of universal telephone service promoted by the Communications Act of 1934, existing telecommunications legislation has only addressed access to the extent of making it affordable for schools, libraries and rural hospitals. While libraries and schools can serve as appropriate sites for public use and training, they are not a substitute for widespread home access.

Populations such as the poor, the severely disabled, the chronically ill, and their caregivers stand to gain much from universal access. Additional technological advances such as homecare telemedicine could then be more easily implemented through universal home access. The result is a widening gap between the "information poor" and the "information wealthy." More active advocacy efforts are needed.

As can be expected of any innovation, there are other drawbacks. Individuals online already run the risk of encountering uninhibited verbal behavior or harassment (known as "flaming"). But this is often controlled by section sysops (system operators), list moderators, or other members. Junk e-mail (known as "spam") has recently become more of a nuisance than threat. More serious are the problems of intentional deception, a risk to be lessened by a caveat emptor awareness to all online marketing.

Another threat to online self-help groups is unethical research. Academics who would never consider interrupting a community self-help group in a church basement appear to have no concerns about their or their students' ease of intruding upon online self-help groups for study without consent of the group. Here are some examples of member reactions from different online groups. "Some feel that they are fodder for research, so are hesitant to speak; others feel they are being silently analyzed." "The reason I will not say any more about myself is that since I have become a member of this list, I have been seeing more and more postings from students doing research papers or working on their advanced degrees.... When I joined this, I thought it would be a support group, not a fishbowl for a bunch of guinea pigs.... I'm sure I'm not the only person who feels this way."

Online networks, especially as they advance to more sophisticated virtual reality recreation forms, will also contribute to the increased "cocooning" or social isolation of many, and to the real prospect of computer addiction for some. Yet, there's some evidence of John Naisbett's prediction that the"high tech" megatrend is resulting in a secondary desire for "high touch" contacts; a small but significant number of online mutual help groups arrange for periodic F2F conferences or meetings.

Similarly, online support networks are not about to replace F2F groups. just as F2F groups augment their mutual support beyond group meetings with a variety of other support activities (buddy systems, member telephone lists, and interactive newsletters), many members of groups will use online support to supplement F2F meetings if they are available. In an "Analysis of Electronic Support Groups for Recovering Addicts," Storm King found that almost all the respondents to a survey regularly attended AA or NA community meetings. Online services might serve F2F groups as another medium for outreach opportunities. At the first open online AA meeting that the author attended in 1985, a visitor who happened upon the meeting at first insisted he was not an alcoholic, but drank a lot only at night. The visitor subsequently left the meeting 30 minutes later having acknowledged his alcoholism and promising to attend a local F2F meeting.

In summary, despite barriers and hindrances, online support groups and networks are growing in number as more individuals recognize their special benefits and conveniences. In time, with the probable integrated telephone-TV-information-home-entertainment systems, more people will be participating in mutual aid efforts and self-help communities. Overall, computers will continue to "evolutionize" society, increasing the linkage of people, ideas, and concerns on national and international levels. Better understanding and use of these empowering tools and networks will advance a new form of mutual help community that helps people more quickly and readily network, organize, educate, and advocate to meet their needs.

Ed Madara, M.S. is the Director of the New Jersey and the American Self-Help Clearinghouses. The American Self-Help Clearinghouse is responsible for the print and online publication of The Self-Help Sourcebook. This article originally appeared in the Spring, 1997 issue of Social Policy and is reprinted here with permission.

Reference
Madara, E. J. (1998). The mutual-aid self-help online revolution. [Online]. Perspectives. [1998, March 27].

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