Practices of citizenship in mental health

How OTs contributed to the development of the movement of

mental health users and to « participatory citizenship »

Virginie Stucki University Of Applied Sciences Of Western Switzerland, HES-SO – Haute école de travail social et de la santé, EESP, Lausanne & Institut of Social and Political Sciences, University of Lausanne

19th Annual ENOTHE Meeting 17th – 19th October 2013, York, England

THE EU YEAR OF CITIZENS

• PhD thesis research topic:

the historical development of the patients’ or users’ movement in mental health in Switzerland

• Aim of the presentation:

to show how occupational therapists (OTs) contributed to the development of the movement of mental health users and how they promoted « participatory citizenship » in Geneva

Notions useful for the understanding of the contribution of the users’ movement in MH

• Participatory citizenship: « participation in civil society, community and/or political life, characterised by mutual respect and non-violence and in accordance with human rights and democracy » (Hoskins & Kerr, 2012, p. 4.)

• Health democracy: (Akrich & Rabeharisoa, 2012; EU, 2008)

–involvement of individuals in the process of decision-making which affects them

–representation in different parts of the system of health governance

–the promotion of individual and collective rights of users in health care

➟ Patient organizations are especially active in three areas: (Carricaburu & Menoret, 2004)

•in the scientific

•in the therapeutic

•and/or in the civil rights’s area.

Some studies and notions useful…

• Studies of users’ associations in MH a good number of organizations direct their activism towards the defence of civil rights, in

the US (Mc Lean, 2010; Morrisson, 2005),

UK (Crossley, 2006)

France (Akrich & al. 2008, Lovell, 2012; Monceau & Visintainer, 2005)

or in other European countries…

• Lay citizenship (“citoyenneté profane”)

(Battegay & Vaz, 2012)

“this work of affirmation and translation of a “right of citizenship” (“droit de cité”) that is not given from the outset” (2012, p. 11)

ADUPSY (Association for the Rights of Users in Psychiatry) (1979-

1984):

an example of “lay citizenship”

ADUPSY’s foundation

• Institutional context (end of the 1970’s):

reforms, initiated at the end of the 1950’s, were called into question by health professionals (psychiatrists, OTs, nurses and social workers)

➟ leads to discussion about an organisation that would “work

for the rights of the “mentally ill”” (Adupsy, 1980, p.2).

• 1978, Meeting of the European Network for Alternatives to Psychiatry in Geneva: users ask some professionals in MH (two OTs, one or two psychiatrists) to join them in their effort to establish an organisation

“The last meeting of the European Network of Alternatives to Psychiatry was held in Geneva with people like Guattari, Rotelli – the successor of Basaglia –, Elkaïm, Robert Castel, etc. And this was on a week-end (…), we organised workshops, debates, etc. and at the end of this week-end, on the street, Alain (…) with one of his friends, (…) approached us. They told us: “Now, it’s enough! We have to create an organisation to defend, develop, reflect, put into practice the question of patients’ rights”. (…) They challenged us by saying: “ You have to show commitment to the creation of an association”. And we decided to create the Adupsy”.

(OT 2, 22.11.12).

« Le dernier réseau du Réseau d’Alternative à la psychiatrie a lieu à Genève avec des figures telles que Guattari, telles que Rotelli, le successeur de Basaglia, telles que… Elkaïm, Robert Castel, etc. Et c’était un week-end (…), on fait un travail d’atelier, de débat etc. et à la fin de ce week-end, sur le trottoir, il y a Alain (…) avec un de ses copains, (…). Ils nous disent : « Maintenant ça suffit! Il faut créer une organisation pour défendre, développer, réfléchir, pratiquer la question des droits des patients ». (…) Et ils nous interpellent en disant : « Vous devez vous engager dans un espace associatif ». Et on décide ensembles de créer l’ADUPSY ».

(OT 2, 22.11.12)

“ …therefore, so that the movement could exist and could really support patients, it had to include health professionals. These health professionals had to be committed to the fight for patients’ rights, and to a critique of the institution and of the treatments it offered”.

(OT 1, 03.10.12)

« (..) donc pour que le mouvement existe et puisse être réellement un soutien aux patients, il doit y avoir des soignants dans ce mouvement. Des soignants qui s’engagent eux aussi dans la défense des patients, et critiquent l’institution et les traitements qui s’y opèrent ». (OT 1, 03.10.12)

“they the users did not ask professionals to take their place or to speak for them. Not at all. But the movement had to include health professionals”.

(OT 1, 03.10.12)

« Ils les usagers demandaient pas qu’on prenne la place ou que ce soit nous qui parlions à leur place. Pas du tout. Mais le mouvement devait être composé avec des soignants ». (OT 1, 03.10.12)

Aim & goals of Adupsy

• Aim: “to promote legitimate self-defence of the rights of mental health users (…) and to fight against the discriminations with which mental health users are often confronted” (Adupsy, 1979, p. 1).

• But: « favoriser toute démarche allant dans le sens d’une légitime défense des droits des usagers de la psychiatrie (…) et de lutter contre les discriminations dont sont l’objet les usagers » (Adupsy, 1979, p. 1).

• Goals (Adupsy, 1979, p. 1): • to alter the boundaries of definitions of responsibility-irresponsibility

• to critically examine the planned revision of legal commitment rules

• to draw up directives defining users’ rights in the field of scientific research

• to establish connections with unions and housing managements companies in order to facilitate the integration of MH users into open employment and housing

A threefold perspective on…

MH problems

MH professionals:

Users

&

Relatives & Friends

Legal specialists

Psychiatrists, Psychologists, Nurses, OT, Social workers, etc.

The OT’s involvement in Adupsy:

a specific role?

The OT’s involvement in Adupsy: a specific role?

• Was there something specific in their way to imagine and support the action and occupation of the MH users?

• Did their engagement nourish their professional activity?

• Was their involvement in Adupsy and their professional activity related? If yes, how?

A broad conception of “rights”

“(…) to practice the question of rights (…) should be understood in a wide sense of the word. It is not only the question of legal and statutory rights…. It’s not enough to promote transformations and changes in the field of MH.”

(OT 2, 22.11.12) « (…) pratiquer la question des droits des patients (…) devrait être compris dans un sens large du terme. Ce n’est pas seulement la question des droits juridiques et légaux…. Cela ne suffit pas à promouvoir des transformations et des changements dans ce domaine. (OT 2, 22.11.12)

“A law that only stipulates the rights of a group of people and that does not impose on those who are in charge of these people a duty to respect them and to be creative, is not worth anything.” (OT 1, 22.11.12)

« Une loi qui stipule simplement les droits d’une communauté précise et qui n’impose pas aux personnes qui ont la charge de cette communauté de la respecter et d’en être créatif, alors elle ne vaut pas cette peine. » (OT 1, 22.11.12)

The project to open a community-based organisation

“This is when we said to each other: “we want a café. We don’t want any occupational therapy! We don’t give a toss! Really. There will be a café where people can go in and out, without being stigmatized, a social mix, somewhere real things are made, not baskets that fall apart, not paintings that stay in a cellar for the next ten years. We wanted to restore furniture for clients, cook daily specials, give a real identity to people suffering from mental pain. A real occupation!”

(OT 1, 03.10.2012)

“C’est là qu’on s’est dit « on veut un bistrot ». On veut pas d’ergothérapie ! On en a rien à cirer ! Vraiment. Il y aura un bistrot où les gens rentrent, sortent pour pas stigmatiser, mélange social où ce que l’on fait c’est des vraies choses, c’est pas des paniers qu’on défait, des peintures qui trainent dix ans à la cave, je sais pas quoi. On restaure des meubles pour des clients, on fait des plats du jour, on donne une vraie identité aux souffrants. Une vraie activité ! »

(OT 1, 03.10.2012)

Conclusion

• Adupsy an interesting case

because the actions of this

organisation paved the way

for other associations in MH

• For OTs the question in the forefront: to be with-in? – What difference would that make

– What kind of relationships to sustain a process of empowerment and of participatory citizenship?

➟With not within groups organized by users

➟Still a real need to support these organizations in the public arena

Les SANS

VOIX

L’Expérience

THANK YOU FOR YOUR ATTENTION !

References Adupsy (1979). Pour une association pour les droits des usagers de la psychiatrie. Genève: Adupsy.

Adupsy (1980). Quelques mots sur l’histoire de l’adupsy, Bulletin de l’Adupsy, 1.

Akrich, M. & Rabeharisoa, V. (2012). L’expertise profane dans les associations de patients, un outil de démocratie sanitaire. Santé publique, 1(24), 69-74.

Akrich, M., Nunes, J., Paterson, F. & Rabeharisoa, V. (eds.) (2008). The dynamics of patient organizations in Europe. Paris : Ecoles des Mines.

Battegay, O. Coelho & H. Vaz (Coord.) (2012). Prendre soins, prendre part, vivre avec : enjeux et défis de la citoyenneté profane dans les rapports santé-société. Porto : Livpsic.

Carricaburu, D. & Ménoret, M. (2004). Sociologie de la santé. Institutions, professions et maladies. Paris: Armand Colin

Crossley, N. (2006). Contesting Psychiatry: Social movements in mental health. London: Routledge.

EU (2008). Opinion of the European Economic and Social Committee on ‘Patients' rights’. Available

at:http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:C:2008:010:0067:0071:EN:PDF

Hoskins, B. & Kerr, D. (2012). Final Study Summary and Policy Recommendations. Participatory Citizenship in the European Union. European Commission, Europe for Citizens Programme. Available at :

http//ec.europa.eu/citizenship/pdf/report_4_final_study_summary_and_policy_recommandations_.pdf

Lovell, A. (2012). Quels modèles d’expertise pour les associations d’usagers en psychiatrie ? Vers une notion tri-partite. In : A. Battegay, O. Coelho & H. Vaz (Coord.). Prendre soins, prendre part, vivre avec : enjeux et défis de la citoyenneté profane dans les rapports santé-société. Porto : Livpsic.

McLean, A. (2010). The Mental Health Consumers/Survivors Movement in the United States. In: T.L. Scheid & T. N. Brown, A Handbook for the study of mental health: social contexts, theories, and systems (pp. 461-477). Cambridge: Cambridge University Press.

Monceau, M. & Visintainer, S. (2005). Le mouvement des usagers en santé mentale : introduction et repères historiques. In: J. Furtos & Ch. Laval, La santé mentale en actes (pp. 263-274). Erès: Ramonville St-Agne.

Morrison, L. (2005). Talking back to Psychiatry: The Psychiatric Consummer/Survivor/Ex-patient Movement. London: Routledge.