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Volume 47 Number 4
Edited by Greg Townley and Alicia Lucksted
Written by Ed Madara (firstname.lastname@example.org)
Mrs. Zakia Shabazz started the first “United Parents Against Lead” self-help group more than 10 years ago in Richmond, VA, after her after she learned her son had been poisoned by lead. Since then she has helped others start seven more UPAL groups in other parts of the country. John Fugazzie started Neighbors-helping-Neighbors in 2011with other job hunters at a local public library that offered computer access and a librarian trained in job search resources – now members of a dozen other Neighbors’ groups meet at similar libraries to set weekly goals and report back the next week. A free keyword-searchable database of these and over 1,200 other national, international, online and model mutual support self-help (i.e., member-run) groups is available online at our American Self-Help Group Clearinghouse website at www.mentalhelp.net/selfhelp
The peer-run support groups listed there cover a broad spectrum of life challenges, transitions and/or adversities - to include almost every illness, disability, addiction, loss of a loved one, parenting situation, caregiver concern, abuse experience, or any one of hundreds of other stressful life situations. The organizations reporting community support groups are checked periodically to ensure that their groups are indeed focused on mutual help; composed of peers who share a common life experience; are member-run; and are voluntary, non-profit organizations.
Searching the American database can be helpful for identifying local community support groups, since it can link you directly or to the website of a national and international group, most of which provide a listing of all their local groups. Most importantly, if there is no group available in one’s local area, the national, international and model self-help group organizations listed provide free or low-cost how-to materials and consultation to assist those interested in starting new local groups. Similarly the American website also includes self-help group resource centers around the country and the world, which also provide details on independent local support groups, as well as assistance to individuals who are seeking help to start a new local group in their area.
Our American Self-Help Group Clearinghouse was officially started in 1990, as a sister service of our New Jersey Self-Help Group Clearinghouse which had been started ten years earlier at Saint Clare’s Behavioral Health Services in northwest New Jersey. The American program sought to simply make available to those people outside New Jersey, the existing national, international, online and model group database that had been used by the New Jersey Clearinghouse for the decade before. Our purpose in developing these clearinghouse programs has been to help increase the awareness, utilization, understanding and development of mutual support groups as empowering, freely-accessible, cost-effective, and healing resources.
Access to the American database was first provided through a helpline, the publication of seven editions of the guide, The Self-Help Group Sourcebook, and the distribution of a software database retrieval and documentation system called “MASHnet” which was used by 18 other self-help group centers in the U.S. and Canada. In the mid 90’s, our staff worked with psychologist Dr. John Grohol, in providing presentations with him at conferences on the power and potential of online support groups. John became the founder of one of the leading websites for mutual support groups, the forums at “Psych Central.” We are most grateful that he kindly created a keyword-software program and arranged for free server space, which continues today as our keyword-searchable “Self-Help Sourcebook Online” database.
Just as experienced members of self-help groups serve as inspiring positive role models for new members, the availability of an established model or national self-help group for a particular issue can truly encourage people to take that first step to join with others in starting a similar group in their area. When we first started the NJ Clearinghouse, we were receiving a significant number of requests for support groups from families who had lost a loved one to suicide. But there were no support groups anywhere at that time – either self-help or professional; and people expressed reluctance to try starting a first group. With research, we found a Survivors Of Suicide self-help group in Ohio, and in response to our request, the group kindly sent us a sample flyer, newsletter, and a newspaper article explaining how family members had joined together to start the group. With subsequent requests, we offered to mail copies of the Ohio materials to callers, along with our handout on how to start a self-help group, not by oneself, but with others in a shared leadership approach. One woman called back in tears, saying how she now realized how her effort to start a mutual support group could give meaning to what initially she saw as the meaningless death of her son. Over the years, we have had additional requests that have caused us to search for any specific community self-help group model that might exist, and in many cases, upon being found were, replicated or adapted into different communities in NJ. Never underestimate the value of a good story to encourage a person to replicate that model.
We have provided consultation to individuals outside New Jersey in their development of several national self-help group organizations, helping them with issues most important to them, such as publicity, networking them with websites and organizations that could promote increased awareness of their group, helping them to focus on members’ felt needs, the need for shared leadership, and especially the need to promote a true sense of ownership on the part of members for their group. Many of the national groups we’ve helped start have been illness-related, like those for Grave's Disease, Post-Polio Syndrome, Miller-Nager Syndrome, Treacher-Collins Syndrome, Ehlers-Danlos Syndrome, Pallister-Killian Syndrome, Pseudtumor Cerebri, and Carpal Tunnel Syndrome.
Through this work and our discussions with many leaders of health-related national self-help organizations, we believe that that the vast majority of health advocacy organizations in the United States have had their roots in self-help groups – an interesting subject for future research. It was Marjorie Guthrie, the wife of the folksinger Woody Guthrie, who pulled families together to start what became the Huntington’s disease Society in 1967. She said her one regret was that no professional had encouraged her 10 years earlier to bring together families, when her husband Woody was first diagnosed with Huntington’s, adding that if one had, “We would be a decade further down the road in terms of research by now.”
One key, empowering question that any caring professional can ask of someone who is requesting a support group that is determined to not yet exist , is “Would you possibly be interested in joining with others to help start such a mutual support group?” When our paid staff or a volunteer asks that question, they know the answer will most often be “no.” But a small yet very significant number of people who expressed possible interest, and have gone on to indeed start that group. When we surveyed a hundred individuals, whom we had assisted in their getting groups started, regarding what was the most important help they received from our Clearinghouse, we were surprised that is wasn’t the how-to materials we had provided, nor the linkages we gave them for national or model groups, but rather the ongoing support we gave in reassuring them that they could indeed start the group.
In terms of online mutual support networks, in addition to the website message boards, email discussion groups, and chat rooms, there’s increased use of both open and closed Facebook pages. With ever-expanding forms of new social media appearing, we can anticipate more options in the near future. Among a few of the online groups available are: Twinless Twins bereavement support for the surviving twin after the death of their sibling; “Hope for Two” pregnant women with cancer mutual support network, started after two pregnant women happened to meet in the waiting room of their oncologist’s office in Buffalo; and the Conduct Disorders Parent Message Board for parents of children with conduct disorder, oppositional defiance disorder, or intermittent explosive disorder. Please see our website for links to these and many others: www.mentalhelp.net/selfhelp
We would be most grateful for leads on any especially helpful national, international, model or online mutual support groups that colleagues may be willing to kindly share.
White, B. J., & Madara, E. J. (2002). The self-help group sourcebook: Your guide to community and online support groups (7th Ed.). Denville, NJ: St. Clare's Health Services, American Self-Help Group Clearinghouse.
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