Self-help/mutual aid as active citizenship associations: A case-study of the chronically ill in Italy

Pubblichiamo una prima parte dell’articolo di Guido Giarelli e Elena Spina pubblicato nello special issue di Social Science & Medicine (Volume 123, December 2014). Guest Editors dello special issue: Guido Giarelli, Ellen Annandale e Carlo Ruzza.

Self-help/mutual aid (which is the most general term chosen by the International Conference held in Ottawa in 1992 and that we shall adopt here) is undoubtedly a widespread social phenomenon, at least in Western countries (we shall not consider here similar kinds of social phenomena, such the microcredit, typical of non- Western countries, which are usually matter of different disciplines and approaches). One of the most interesting issues this particular type of collective social action raises in the current debate is its peculiar nature and location in the societal context. In fact, the answer to this issue brings with it a number of implications both theoretically and practically significant: however, they often remain implicit and unquestioned. Usually, self-help/mutual aid is considered as a component of the so-called ‘third sector’: a term first used by some scholars in the United States in the early 1970s (Seibel & Anheier, 1990). This seems to imply a conception of society as founded on three sectors, generally defined as state (of public nature), market (of private nature) and third sector. Sometimes, some authors (Dekker & Van den Broek, 1998) also add a fourth sector, identified with the community, including households and neighbourhoods. The nature of the third sector is, in a controversial manner, defined according to the different authors as voluntary (most commonly used in Great Britain, see Baggott & Foster, 2008), non-governmental (in Poland, e.g., the term ‘self-help’ is synonymous of non-governmental organization; whereas in Western countries the latter term is used in the context of the international cooperation), social-private (used in Italy, see Donati & Colozzi, 2004), non-profit (the definition of which has been made at the international level by the scholars of the Institute for Policy Studies at Johns Hopkins University in Baltimore, who consider the prohibition of the distribution of the profits from its activities as the most important element of the third sector; to it, some scholars such as Anheier & Seibel (1990) and Salamon & Anheier (1994; 1996), add four other additional elements: the existence of formally constituted organizations, with statutes and rules governing their internal relationships; private legal nature, self-government with the election of its managers, and the voluntary nature of the choice of those who participate). Probably, this variety of definitions is the outcome of the range of different specific historical, political, economical and cultural contexts in which the social construction of what is termed as ‘third sector’ has taken place, as the long history of this concept can show (Laville, 2000).

We assume that the idea of ‘third sector’ is an institutionalist vision of economical matrix which reduces the scope and meaning of social phenomena such as self-help/mutual aid to a simple component of a ‘sector’, albeit considering it as endowed with its own particular characteristics. Assuming that the notion of ‘sector’ can be considered as an equivalent of system or subsystem e and this is also problematic, since for example Evers (2000) defines the third sector as a component of the public space in civil societies e this takes no account of the mostly non-systemic nature of agency of the phenomenon. Moreover, it does not consider the more complex reality of the post-industrial societies, whose social subsystems cannot be reduced to simple ‘sectors’ of single nature, but imply a plurality of social relations: the political systems, e.g., does not coincide with the state, of public nature, but also includes a private component (lobbies, pressure groups, representatives of various stakeholders, etc.) and a civic one (political parties, movements and political associations, etc.). In the same way, the economic system does not coincide with the market, of private nature, but also includes a public sector (state-owned industries, etc.) and a civic component based on social economy (and this is most probably what can be actually defined as ‘third sector’). Finally, a tripartite vision of the society does not consider the enormous development that, over the last century, have had on the one hand the welfare systems and, secondly, the telecommunications, media and information technology: and this is the rationale which makes nowadays necessary to recognize the differentiation of two new social subsystems, which can be respectively defined as social and health care (which includes the more or less integrated system of social and health services) and communications-cultural system (including the media techno-structure).

A more sociological approach could start from what Borkman (1999) identifies as the most distinctive element which underlies the social phenomenon of self-help/mutual aid: the ‘circle of sharing’, that is “a small number (usually less than twenty) of people with the same predicament, disease or disability sit in a circle, sharing personal stories of their suffering and their attempts to cope with and resolve the problem”. The sharing circle confronts us with a conceptual difficulty which represents, from the sociological point of view, a theoretical challenge which calls into question the well established concepts of ‘private’, ‘public’ and ‘society’ itself. What is the actual nature of the circle of sharing? If we consider the kind of problems addressed and directly related to the sphere of the body, disease, disability, sexuality, family, life, death, feelings and attitudes, life styles, it can possibly be ascribed to the private sphere of primary relationships; but the relationship established between the members of a self-help/mutual aid group hardly could be regarded as of a private nature, since it is neither based on kinship nor neighbourhood, friendship or affection.

The theoretical approach we followed in our study is based on the idea of ‘active citizenship’ (Moro, 2005; Active Citizenship Network, 2007), on the basis of the consideration of the individual as a person, that is a unique human being and not just a social role-complex (patient, user, consumer, client), and as a citizen with rights and responsibilities towards the local community, the nation-State and humankind (whereas the definition of the rights is clearer since they are written as part of laws, national constitutions and of the Universal Declaration of the Human Rights of the United Nations, responsibilities are not as well defined and the debate is open as to what the responsibilities are toward the local community, the State and the humankind). An active citizen is someone who fulfils both rights and responsibilities in a balanced way: it entails the recognition that in a society all individuals are mutually dependent and that by making a positive contribution towards the society by participating in its life, they are helping themselves as well as others. Active citizenship is the glue that helps to keep society together, since it allows people to focus beyond their own self-interest. It implies a responsibility to ensure that no one is socially excluded, especially the weakest, disabled and ill people; and is oriented towards the full implementation of their social rights.

In fact, the predominant purpose of self-help/mutual aid groups is specifically geared to the promotion, protection or rehabilitation of health and well-being of their members as specific social rights. However, in the real world, these groups are often part and parcel of wider organizations providing benefits or services of altruistic type (voluntary organizations, charities, etc.) or of associations aimed to safeguard the respect of rights of the most vulnerable citizens (advocacy associations). All these active citizenship associations have as a common denominator the desire to promote, take care and represent the rights, needs, interests and expectations of citizens, especially the most vulnerable ones such as the disabled and the chronically ill, as users, patients, caregivers, or simply sufferers in the context of health and social systems and of the wider societal arena. However, both organizations of volunteers and associations of advocacy do not necessarily share a common problem or predicament, which remains the hallmark of self-help/mutual aid and the social basis for the establishment of the ‘circle of sharing’.

Even though practically the boundaries among self-help/mutual aid, volunteering and advocacy are often blurred in the same organization, from a theoretical point of view it is appropriate to distinguish them at least as ideal types of different activities, since the sharing of a common problem involves a different prevailing purpose and foundational principle. In fact, the main purpose of voluntary organizations is to deliver services of altruistic and solidarity type, whereas associations of advocacy are aimed to provide information and support to the observance of the social rights of the weakest citizens, especially when they become users/patients of social and health care services. Thus, we could define the ‘gift’ (on the meaning of the gift in non-Western societies, see Mauss, 1923-1924) as the foundational principle of volunteering based on altruistic action; whereas empowerment of the weakest citizens is the foundational principle of advocacy associations, centred on the action supporting the exercise of their rights from the perspective of a substantive equality (for a specific perspective on ‘empowerment’ in the social and health care context, see Starkey, 2003).

Instead, self-help/mutual aid is geared towards the promotion of what Riessman defnes as ‘the helper principle’, that is “You alone can do it, but you cannot do it alone” (Riessman, 1965). On one hand, the direct taking of personal responsibility, on the other, the mutual aid: their conjunction implies a situation of interdependence, in which the person agrees to assume her/his responsibility, but within a context of mutual aid.

It “consists in benefit, through the testimony of the personal experience, from the obstacles and the skills acquired over time. Helping others has a strong value of aid for themselves” (Focardi et al., 2006). It is probably this junction of proactivity and of reciprocal solidarity the basic element and the fundamental pivot around which rotate all the other possible characteristics of self- help/mutual aid.

Guido Giarelli

Department of Health Sciences, University, Catanzaro, Campus “Salvatore Venuta”, Viale Europa, Localita’ Germaneto, Catanzaro

Elena Spina

Department of Economic and Social Sciences, Piazzale Martelli 8, Ancona


Active Citizenship Network. Patients’ rights in Europe: Civic Information on the Implementation of the European Charter of Patients’ rights. Final Report. FONDACA, Roma, 2007

Anheier HK, Seibel W (Eds). The Third Sector: Comparative Studies of Non Profit Organizations. Walter de Gruyter, Berlin-New York, 1990

Baggott R, Foster R. Health consumer and patients’ organizations in Europe: towards a comparative analysis. Health Expect. 11, 85e94, 2008

Borkman TJ. Understanding Self-help/mutual Aid. Experiential Learning in the Commons. Rutgers University Press, New Brunswick, 1999

Cesareo V, Vaccarini I. La libertà responsabile. Soggettività e mutamento sociale. Vita e Pensiero, Milano, 2006

Chambers S, Kymlicka W. Alternative Conceptions of Civil Society. Princeton University Press, Princeton, 2002

Cohen JL, Arato A. Civil Society and Political Theory. MIT Press, Cambridge MA, 1992

Dekker P. Voluntary Associations, Volunteering and the Ideals of Civil society. Tilburg University, CIES, no date

Dekker P, Van den Broek A. Civil society in comparative perspective. Voluntas. 8(1): 11e38, 1998

Donati P, Colozzi I (Eds). Il privato sociale che emerge: realtà e dilemmi. Il Mulino, Bologna, 2004

Evers A. Les dimensions sociopolitiques du tiers secteur. Les contributions théoriques européennes sur la protection sociale et l’économie plurielle. Sociol Travail. 42: 567e585, 2000

Focardi F, Gori F, Raspini R. I gruppi di auto aiuto in Italia. Indagine conoscitiva. Cesvot, Firenze, 2006

Fondazione Istituto Andrea Devoto. Indagine conoscitiva sulle associazioni di auto aiuto e di tutela della salute. Fondazione Istituto Andrea Devoto, Firenze, 1998 e 1999

Fondazione Italiana per il Volontariato. Volontariato e Terzo Settore. FIV, Roma, 1995

Giarelli G. Beyond Consumerism: Active Citizenship and Community Health Governance. Paper presented at the ESA Regional Network on Southern European Society ‘Civil society organizations in the Mediterranean area: Societal role, challenges, dynamics’. Sassari, 1-2 October, 2012

Giarelli G, Nigris D, Spina E. La sfida dell’auto-mutuo aiuto. Associazionismo di cittadinanza e sistema socio-sanitario. Carocci, Roma, 2012

Gramsci A. Quaderni del carcere, vol. 4. Einaudi, Torino, 1975

Habermas J. Strukturwandel der Oeffentlichkeit. Hermann Luchterhand Verlag, Neuwied, 1961

Habermas J. Theorie des kommunikativen Heandelns. Suhrkamp Verlag, Frankfurt am Main, 1981

Habermas J. Kampf um anerkennung im demokratischen rechtsstaat. Suhr- kamp Verlag, Frankfurt am Main, 1996

Hansmann H. Economic theories of nonprofit organization. In Powel WW (Ed): The Nonprot Sector: a Research Handbook. Yale University Press, New Haven CT, 1987

Hegel F. Grundlinien der Philosophie des Rechts. Nicolai, Berlin, 1821

Ingrosso M. Self-help e associazionismo fra pazienti: intrecci e nuove opportunità. In Cipolla C, Maturo A (Eds): Scienze Sociali e salute nel XXI secolo. Nuove tendenze, vecchi dilemmi? Franco Angeli, Milano, pp. 460e477, 2008

James E. The nonprofit sector in comparative perspective. In Powel WW (Ed): The Nonprofit Sector: a Research Handbook. Yale University Press, New Haven CT), 1987

Keane J. Civil Society: Old Images, New Visions. Polity, Cambridge, 1998

Laville JL. Le tiers secteur. Un object d’e’tude pour la sociologie e’conomique. Sociol Travai. 42: 531e550, 2000

Lohmann R. The Commons: New Perspectives on Non Profit Organizations and Voluntary Action. Jossey-Bass, San Francisco, 1992

Mauss M. Essay sur le don. Année Sociologique seconde série. 1923-1924

Moro G. Azione civica. Conoscere e gestire le organizzazioni di cittadinanza attiva. Carocci, Roma, 2005

Paci M. Nuovi Lavori, Nuovo Welfare. Il Mulino, Bologna, 2005

Parsons T. Comunità societaria e pluralismo. Le differenze etniche e religiose nel complesso della cittadinanza. FrancoAngeli, Milano, 1994

Presenti L. Comunitarismo-comunitarismi: una tipologia essenziale. Sociol Polit Social. 5 (2), 9e38, 2002

Putnam RD, Leonardi R, Nanetti RY. Making Democracy Work. Princeton University Press, Princeton, 1993

Riessman F. The “helper” therapy principle. Soc Work. 10(2): 27e32, 1965

Rueschemeyer D. The self-organization of society and democratic rule. In Rueschemeyer D, Rueschemeyer M, Wittrock B (Eds): Participation and Democracy in East and West. ME Sharpe, Armonk NY, 1998

Salamon LM, Anheier HK. The Emerging Sector: an Overview. The John Hopkins University, Baltimore, 1994

Salamon LM, Anheier HK. In search of the nonprofit sector: the question of definitions. Voluntas. 2, 125e153, 1996

Seibel W, Anheier H. Sociological and political science approaches to the third sector. In Anheier H, Seibel W (Eds): The Third Sector. Comparative Studies of Nonprofit Organizations. Walter de Gruyter, New York NY, 1990

Starkey F. The “empowerment debate”: consumerist, professional and liberational perspectives in health and social care. Soc Policy Soc. 2(4): 273e284, 2003

Taylor C. The Politics of Recognition. Princeton University Press, Princeton, 1992

Tognetti Bordogna M (Ed). Promuovere i gruppi di self-help. FrancoAngeli, Milano, 2005

Tonnies F. Gemeinschaft und Gesellschaft. Reislad, Leizpig, 1887

Weisbrod D. The Nonprot Economy. Harvard University Press, Cambridge MA, 1988

Wood B. Patient Power? The Politics of Patients’ Associations in Britain and America. Open University Press, Buckingham, 2000

Wuthnow R. Between States and Markets. Princeton University Press, Princeton, 1991

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