Self-help Groups Develop Collective Experiential Wisdom

Presentation to Self-Help Group for Family Survivors of Suicide, Tokyo Sept 7, 2013 Thomasina Borkman, Professor of Sociology Emerita, George Mason University, Virginia USA

Thank you for inviting me to talk to you today

I am pleased and honored to be here I appreciate Professor Tomofumi Okas arranging for me to come I apologize for speaking English and for not speaking Japanese 2

Your Group is very impressive

Professor Tomofumi Oka has written about your group and told me of your meaningful work. I am very impressed with your dedication, insight and valuable work. You represent the best of self-help groups-groups that deal with extremely difficult emotional and social issues 3

What I will talk about

My story of discovering experiential knowledge as key to self-help groups What are self-help groups? How do they function? How are self-help groups different from professionallyled support groups? Do differences matter? How do groups develop experiential knowledge? How do individuals learn and change through the sharing circle? Request your opinionDoes this make sense to you? Are ideas useful for your group?

How I discovered Experiential Knowledge: Key to Self-help Groups

1970-as new Assistant Professor I studied a self-help group for people who stutter Sharing circle of people who stutter told stories of discrimination Discrimination at work or even unable to get a job Treated with disrespect in social and business interactions Humiliated on the telephonecallers thought they were drug addicts Felt self-hate and despair about their stigmatized condition They admired their peers in the group who were intelligent, educated and accomplished.

I admired their qualities and learned from their stories of lived experience
Honestly faced their stigmatizing situation and resolved to change it Courageously worked to overcome their inferiority and self-hate Became advocates to deal with the prejudice and discrimination they faced Gave and received comfort and support from each other Saw their peers as role models rather than looking to professionals or anyone else. Hearing their stories in the sharing circle was more informative and educational than any books I read

My personal journey to appreciate lived experience

In 1972, I joined a womens consciousness raising group for personal reasons. I was stuck in the academic mode of rational analytic thinking and talked of research, statistics and facts I did not understand that women talking about their personal experiences is a narrative form of knowledge Self-help groups convey knowledge through the narrative (story telling) form of knowledge. I was almost expelled from the group before I understood how to personally appreciate narrative storytelling

Aha! Self-help groups use and create experiential knowledge

Putting the two experiences togetherI learn from the stutterers group who are telling about their lived experiences The women teach me through their personal stories of lived experiences The narrative or storytelling form of knowledge transmission is old, venerable and valuable I will give a name to this knowledge and wisdom Experiential Knowledge

I have studied self-help groups in North America and Europe for 43 years Self-help groups are very common in Western industrialized countries
Since the 1970s many groups have been formed For all chronic diseases, life transitions, stigmatized social issues, and tragedies (e.g., World Trade Center bombing survivors) Many formats: sharing circles, internet groups, warm lines (telephones for non-crisis support), buddy systems (seasoned one helps newcomer)

Self-help groups I have studied in some depth

People who stutterUS, Sweden, Holland Parents whose children have rare genetic diseases or have cancer-US Bereaved parents of Toronto-Canada Facial deformitiesUS & Canada Medical technologies: ileostomies & colonostomies--US Severe mental illnessUS, UK, Sweden Alcoholism US & Canada

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My ideas were developed in the West. Do they make sense to you?

My work has mostly been in Western countriesUS, Canada, Sweden and England Will my ideas make sense to you? At the end of my talk I will ask if the:
Material presented makes sense to you? Ideas presented will be helpful to you?

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HOW ARE SELF-HELP GROUPS DEFINED? THEIR CHARACTERISTICS?

Definition of Self-Help Group

Peer principle: Members share some problem or status that results in suffering/distress Participation is voluntary, not coerced Peers organize, control and lead groups Lived experience is the basis of expertise and authority Sharing circle is the key technology Reciprocity: all members are both helpers and helpees Voluntary gift relations: No fees are charged, but members contribute money Group problem solves and learns how to convert distress to bearable situation

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Other characteristics that can occur

Codified liberating meaning perspective Additional goals than support: advocacy, empowerment, education and other activities Internet presence Connection to a larger organization

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Core principles of self-help groups

1. Peer principle: participants have experiences in common 2. Peers govern selves and group 3. Source of authority in group: lived experience 4. Outsiders without lived experience disrupt the sharing circle 5. Members receive help from and give help to each other 6. Voluntary gift relations (non-monetary) 7. Strengths, not pathology, orientation

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Meaning perspective of issue

Definition: Ideas, philosophy or articulation about the nature of the issue and individuals who have the issue, its causes, its meanings, characteristics, and how to cope or resolve it. Professionals have meaning perspectives called theories or diagnoses and treatments. Lay people have meaning perspectives called hearsay or old wives tales Self-help groups know and can use available meaning perspectives or develop their own

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Liberating Meaning Perspective

Meaning perspective about issue developed by self-help group based on their lived experiences Meaning perspective that is liberatingfree of stigma, free of self-hate, and free of negativity; respectful of issue and survivors; life enhancing. Innovative way of thinking about the issue and its resolution Liberating meaning perspectives are gifts to society

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WHAT ARE DIFFERENCES BETWEEN EXPERIENTIAL, PROFESSIONAL AND LAY PERSPECTIVES? DO DIFFERENCES MATTER?

Differences between experiential, professional & lay perspectives

Characteristic Perspective Personal interest in situation Type of knowledge Experiential Holistically and intensely involved Professional Detached worker Lay bystander Uninvolved bystander Little, idle curiosity, neighborly concern Survival, well being, Career, status, quality of life for money family Lived experience, pragmatic

Abstract, university- Second hand based, theory information, from media, old wives tales Often stigmatizes victim, arrogant, knows more than self-helper or lay person Often stigmatizes victim, blames victim, lacks information and understanding

Attitude toward the Depends on stage groups issue of learning: newcomer (upset) versus seasoned (accepting)

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Self-Help Group Versus Professionally-led support Group

Self-Help Group 1. Peers control decisions 2. Experiential knowledge basis of authority 3. Peers challenge professional meaning perspective 4. Peers create their own liberating meaning perspective 5. Sharing circle is therapeutic and basis of technology Professional Support Group 1. Professional makes decisions 2. Professional knowledge basis of authority 3. Professional meaning perspective dominates 4. Professional treatment methods used 5. Sharing circle altered by professional viewpoint

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How differences between self-help groups and professionally-run support groups matter (1)
Self-Help Groups
Experiential knowledge Develop liberating meaning perspective Develop nonmedical perspective of focal issue Individual and Issue advocacy to improve situation Develop citizenship skills Empower participants

Professional support groups

Professional knowledge Imposes professional and medical perspective of issue Diminishes the validity of the experiential perspective No advocacy No citizenship skills developed Group survival dependent on professional Reinforces passive client role

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How differences between self-help groups and support groups matter (2)
Self-help group Individual finds voice Individual develops ownership in group Individual gives and receives help from peers Helper principlehelper gains from helping peers Individual becomes prosumer (provider and consumer of services) Professional support group Professional has voice Professional owns group and makes decisions about it Individual receives from professional and peers Professional gains from helping clients Individual remains client of professional

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Professionals can differ

Sympathetic Professionals Examples: Tomofumi Oka and Thomasina Borkman Characteristics: Understand peer-led self-help groups Admire experiential knowledge Supportive of self-help groups Not interested in controlling or managing self-help groups Typical Professionals Examples: Therapists who think your group should be run by them Characteristics: Do not understand peer-led self-help groups Only professional knowledge exists Pay lip service to peer groups Believe peer groups should be led and managed by them

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HOW DO SELF-HELP GROUPS DEVELOP EXPERIENTIAL KNOWLEDGE?

Experiential Knowledge
Truth based on personal experience with a phenomenon rather than information gained by hearsay, folk or lay knowledge, professional knowledge, or the pronouncements of a charismatic leader. Experiential knowledge expressed as stories or narratives of lived experience. 25

One persons experiences are not Experiential Knowledge

One persons experiences are:
idiosyncratic and unique similar to and different from others in some ways An individual does not understand what has/is happening to him/her until s/he shares it with peers without sharing what you have been through/are going through, you do not know how unique or common it is not experiential knowledge

A person who has not shared his/her experiences with many others does not know the limits, similarity, and uniqueness of what has happened to him/her.

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Experiential knowledge develops from the collective efforts of the group

Peers in a self-help group can develop experiential knowledge of their disturbing issue and how to cope with it over time in a manner that is satisfactory to them.
Peers learn from each other in the sharing circle by telling their stories of what happened, how they feel and think about it, and what and how they are coping with it over time.

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Experiential Knowledge develops from the group sharing its experiences and reviewing others ideas

How do we bring meaning to our lived experiences? Our suffering and grief? The group reviews professional and lay ideas about them & their issue. The self-help group collectively shares its stories of suffering and loss, coping and adjusting, despair and faith and over time evolves a liberating meaning perspective 28

Review professional and lay peoples ideas about you: what is helpful and not helpful? We are affected by what others think of us We internalize what others think of us Professional and lay peoples ideas about us are frequently stigmatizing and damaging.
For example, in the United States, many surveys have found that the group that is most stigmatizing of severe mental illness are mental health professionals who work with them

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Developing experiential knowledge includes reviewing others ideas about your experiences
Professionals ideas about you and your issue Lay peoples ideas about you and your issue

Professionals who specialize in grief or mental health have theories about you as family survivor of suicide These professionals often believe they have superior knowledge because of their training and licenses. Professionals theories may or may not be helpful to you- you decide

Your neighbors have opinions about you as family survivor of suicide Your friends have ideas about you and what you are going through The media (TV, newspapers) portray family survivors in certain ways These ideas may be helpful or unhelpfulyou decide

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A case from my research: A self-help group learns the limits of professional knowledge People who stutter in the US are stigmatized, ridiculed, discriminated against in jobs, housing and education. They lack friends and spouses; they suffer extensively. The group I studied for people who stutter developed experiential knowledge about the limits of speech therapy which led to totally different results than what they individually began with 31

Case study: Individuals blame themselves for therapy failures

Most newcomers to group had had speech therapy for stuttering They held professional speech therapists in high esteem because they were professionals The therapy decreased their stuttering for several months, then relapse occurred; they started stuttering again Members of the group thought something was wrong with them because speech therapy stopped working.

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The group develops experiential knowledge through sharing their stories of speech therapy over and over

Over time, the group recognized similarities of members stuttering therapy experiences They questioned professional therapy and read scientific research about it. They knew from their many similar collective experiences that the stuttering therapy was limited. They changed their perspective:
They were not to blame; there was nothing wrong with them. The therapy didnt work.

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Summary: Experiential knowledge changes them and their perspective

Before: Individuals blame themselves for therapy failure
The professional and therapy held in high esteem. The therapy worked in the therapists office but not on the street The person stuttered less or not at all for awhile The person returned to his pretherapy level of stuttering The person blamed himself for failure of the therapy The person felt self-hate for failing therapy.

Experiential knowledge of group: stuttering therapy is limited Professionals and their therapy are limited Therapy works only under certain conditions Therapy works for limited period of time Person who stutters is not to blame and should not feel badly Question: is there a place for any stuttering therapy?

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Collective experiential knowledge becomes authority

Self-help members become certain of the experiential knowledge created by their group Their knowledge and wisdom becomes authority as many peers shared their experiences over a period of time. Although professionals and/or lay people may disagree or not understand, self-help members feel confident about what they collectively know. Many ideas are values or beliefs which are not subject to scientific dispute or rational argument.

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HOW DO INDIVIDUAL MEMBERS LEARN AND GROW IN A SELF-HELP GROUP?

Cycle of Experiential-Social Learning

Listen to peers in meeting Share your experience with idea in meeting

Interpret information for self

Try out idea in daily life

Reflect: Does idea apply to me?

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Definition of Sharing Circle

Peers with similar distressful situations share their stories of lived experiences, strength and hope. Circle symbolizes that everyones experiences are equal and valid Characteristics

Safe place to express feelings and thoughts honestly Egalitarian each person and his/her story is respected on its own terms Informativehonest stories (narratives) provide information on contours, variety, differences and similarities in perspective Supportivevery special emotional and social support as one feels understood and thereby connected Non-judgmental about extreme expressions of feelings and thoughts No imposed meaning perspective from outside about how to think, feel, interpret experiences

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Sharing Circle is for peers only

Outsiders without lived experience of common issue disrupt the sharing circle!
Outsiders whether typical professional or well meaning friend lack experiential perspective Outsiders have beliefs, biases, attitudes of typical professional or typical lay person that is unhelpful Peers knowing an outsider is in the room adjust their sharing to accommodate outsider rather than honest account of feelings and thoughts that is therapeutic for them thereby sabatoging the value of the circle.

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Self-Help Groups use Experiential and Social Learning Self-help groups operate on the concept of sharing experiential knowledge as a basis for personal growth and positive change. Members learn from each other (social learning) about their lived experiences.

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Dealing with grief involves personal beliefs and values

Values are the ethical, spiritual and relationship principles important to us Values and beliefs are derived from culture, personal belief systems and religious/spiritual systems. Individuals develop their own values and beliefs but seek communities whose values and beliefs agree with theirs. Professionals should not judge values nor impose values on others Self-help groups are communities holding similar values and beliefs. Different self-help groups for the same issue hold different beliefs and values.

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Journey of grief varies over time

Newcomers who recently lost a family member may be:
Confused Ambiguous how to interpret the death Intense and unsettling feelings

Seasoned member of survivor group

Intensity and expression of grief changes over time Gain understanding and meaning Able to comfort and help newcomer

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Cycle of Experiential-Social Learning

Listen to peers in meeting Share your experience with idea in meeting

Interpret information for self

Try out idea in daily life

Reflect: Does idea apply to me?

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Congratulations on your liberated meaning perspective of grief

Your innovative ideas are helpful not only to your members Your innovative ideas are a gift to Japanese society Your advocacy work is worthwhile

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Do my ideas make sense to you? Are they helpful?

I would like your reaction to my ideas of:
Experiential knowledge Sharing circle Self-help group as peers only, no outsiders Professional support groups differ from self-help groups Cycle of experiential-social learning

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Thank you
For Inviting me For Listening For the work you do For working with Professor Tomofumi Oka

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For experts or those interested in references- Borkman, T. Understanding Self-Help/Mutual Aid: Experiential Learning in the Commons. New Brunswick, N.J.: Rutgers Univ. Press, 1999. Self-Help &Mutual Aid Groups: International & Multicultural Perspectives, Prevention in Human Services, 11, 1-2, 1994. Riessman, F. & D. Carroll. Redefining Self-Help. San Francisco: Jossey-Bass, 1995. Kurtz, L. Self-Help & Support Groups: A Handbook for Practitioners. Thousand Oaks, CA: Sage, 1997.

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