Not so long ago, in the early 1960s, people living with mental health problems found themselves in an asylum, sharing their daily lives with people living with an intellectual disability and with others, such as the so-called Duplessis orphans. In 1961, 20,000 people out of a Quebec population of 5.3 million were living in these overcrowded institutions. After centuries of confinement in asylums, a deinstitutionalization movement began.

Our perception of people living with mental health problems has shifted from that of excluded people with little or no credibility to that of people living with a “disease like any other” that needs to be treated. People who have lived or are living with a mental health problem have found that their diagnosis often defined their lives. In response to this, they articulated “I am a person, not an illness” emphasizing the person’s abilities, and then logically moved on to assertiveness: “I am taking back power over my life”, “I have the power to take action to recover”.

Many researchers have been interested in the development of a person’s autonomy and self-determination in a perspective of empowerment. We are talking here about the power to really make decisions about one’s own life (social, medical, study projects, work, etc.). We are talking about the power to get involved in the community, to share one’s experiences with other people living with mental health problems. We are talking about the power to go so far as to participate in the organization of programs, activities and services that concern him or her.

Many psychiatricized people have made recovery journeys, sometimes spectacular, in the transformation of their lives. These people have inspired others, and today, hope allows us to think about a better future by going through or after having gone through difficult times with our mental health or that of a loved one.

In order to continue to change medical and social practices to help people, community organizations (generally for a long time) and more and more institutions in the health network are giving people a voice and taking into account their experiences and needs in their follow-up and in the organization of services^[1].

In its guiding principles, the Ministry’s Mental Health Action Plan 2005-2010 states that :^[2]:

The power to act: The Mental Health Action Plan 2005-2010 recognizes the ability of people living with mental illness to make choices and to actively participate in decisions that affect them, despite the presence of certain symptoms or disabilities. The participation of users and their families in mental health service planning exercises stems from this principle.

The first measure put forward in the Mental Health Action Plan 2015-2020 adds:^[3] :

To ensure that service users fully exercise their citizenship in the health and social services network and that members of their entourage are recognized as partners, each institution responsible for providing mental health care and services will develop and implement an action plan on the primacy of the person in the delivery and organization of services.

Several CISSS-CIUSSS^[4] organize meetings with individuals, their entourage and community organizations to consult them in order to better meet their needs.

In community organizations, the board of directors is elected by the members who, in most organizations, are people from the community who want to contribute to the development of the organization and people who receive services from the organization. These people can stand for election at the annual general meeting. It is not uncommon for a number of board positions to be reserved for members. In some organizations they are in the majority and sometimes they hold all the positions.

In addition to participation on the board of directors, many organizations have a membership committee that represents the membership at large. This committee is sometimes advisory, sometimes decision-making. It may have a mandate in the organization of services or in the choice of activities or, for example, in the development of public positions.

In some places, there are organizations that are self-help groups made up exclusively (or almost exclusively) of people living with mental health problems. These organizations often take part in public debates about different mental health issues.

Whether in the public system or in the community, people who have experienced or are experiencing mental health problems have opportunities to express themselves about their needs, share their experiences, and influence and participate in decisions that affect them.

^[1] The idea of a “patient partner” is becoming more and more concrete in various sectors of medicine: https://ceppp.ca/fr/. A Google search with the words patient partner gives many results in several hospital centres in Quebec.

^[2] Mental Health Action Plan 2005-2010, p. 12: https://publications.msss.gouv.qc.ca/msss/fichiers/2005/05-914-01.pdf

^[3] Mental Health Action Plan 2015-2020, p. 12 : https://publications.msss.gouv.qc.ca/msss/document-001319/

^[4] See the page : What types of services are offered in the Integrated University Health and Social Services Centers – Integrated Health and Social Services Centers (CIUSSS-CISSS)?