QSOS Conclusions

Conclusions From QSOS

Our Community

People who've experienced the mental health system* are a group made up of many constituencies, communities and cultures reflective of Canadian society. Sometimes people form groups that go unnoticed and unfunded for long periods. These groups can survive for some time. Our resources prevented a fuller investigation of this "support" level to the system, but such groups embody the recovery approach. Especially in North York and Scarborough, two under-served areas, support groups carry much of the load.

In a way, most of our "involvement" in the system is merely about interacting with others. Peer interactions are not only important to recovery, they help us understand people's needs and values in relation to service evaluation and research. We may get closer to participatory decision making from and amongst consumer survivors by providing a space for people to interact more often and in more diverse ways. By focusing on establishing support spaces throughout the system, a group process can emerge which will enable more accountability and direct our representatives.

* A note on self-identifying language: "experiencing" the system assumes consciousness; "using" assumes volition; "consuming" goes further by implying power of boycott and reproducible solutions; "dealing with" the system implies negotiation and a project of psychological closure; "surviving" assumes escape. "Being mentally ill" is specific to medicine, like "experiencing neurological impairment" and "living with a disorder", terms that illustrate our attempts to humanize technical language. "With mental health issues" implies issues that are biological, though social or personal factors could apply. In the future, imagine "formerly mentally ill", or "recovered mental health".

Two Common Barriers

The first barriers to ongoing outreach efforts and to the representative process (which affected all our work from technical issues to decision-making), are poverty and disparity. Common ideas about poverty and a person's expressions and behaviours while in poverty, some of them health issues, all hinder our ability to hear, comprehend and assist an individual who may be in need of basic supports. A lack of experience of poverty presents a major impediment to relating with that person. The feedback is filled with people saying "basic needs first!"

The second barrier is pathology, which encloses the problem of coercion. Common ideas about (and the clinical gaze on) a person who behaves in ways believed to be fundamentally disordered interfere with that person's free understanding of their experience and consequently their expression of need and their ability to self-advocate. When collaboration is sought, internalized beliefs about disorder can impede participation and appropriate responses to that person. If "insight" is lost for a time and then presupposed to be at risk indefinitely, vigilance against risk sets the stage for discrimination. Transposing this problem to "stigma" again centres our concern on the medical context. For the person involved, mentality can be (at least for a time) altogether suspect: memories, perceptions and images of self may be rejected off hand as products of illness.

A clinician may see it as pathology, an anthropologist as behaviour, but people living "it" might just call it living. Trying to see themselves through clinical values that are impossible to fully determine by clinicians themselves makes for a difficult recovery. Normative markers may become mixed in with treatment goals. Perceiving and building from individual strengths may become a hopeless program. Pathology can downplay social interaction and political coordination between stakeholders. And finally, being a negative value, pathology may distance all stakeholders from society and from potential funding bodies.

Constituency, Belonging and Diversity

We believe some diverse representation was achieved in our consultation with people who have experienced the mental health system. However, a much more intensive process is necessary. With support, the community may elaborate and sustain positive and constructive contacts, both organizational and personal, throughout the community of people who've used services. Through such contact points, the community could exchange and visit information, and system design may be approached more holistically.

Our community has historically fought with others and within itself to deal with ableism, sanism, and other related forms of discrimination. Unlike other stakeholders, our representative process depends wholly on people who are deemed "low functioning". To embrace "constituency" and representation for all means to work for common experience, not for enhanced facility, skill or procedure. While structure and process are necessary to a competent exchange of power and information, reaching into and understanding our own community involves awareness and consciousness of different experiences.

Over the years, with and without community leadership, people have made a difference for others at a personal or grassroots level. They listen to each other, deal with isolation, represent and stand by each other. There is an oral culture of survival for people who've learned to rely on their wits and the basics. Some would call this facility an "expertise", an "outsider" knowledge base. Some would suggest this knowledge could assist professionals and others linked to the formal system in new ways of listening, supporting and interconnecting.

Some Tips

1. Acknowledge what's being said, working from someone's statements when switching topics.
2. Facilitate food, transit, notes and spaces for people without breaking process and as a part of discussion (easier with two facilitators or a volunteer).
3. Use body language to demonstrate openness and interest to full participation, make eye contact and use people's names.
4. Allow participants time to work through and out of difficult emotional situations or conflicts with others.
5. Make sure everyone speaks without unduly drawing attention to them.
6. Eye contact with speaker and the whole group– encouraging others to speak to the group rather than facilitator.
7. Put the other person and their experience first.
8. Ask direct (sometimes provocative or humourous questions), without insulting or diminishing anyone (sensitivity and diversity training a must).
9. Speak to "non-communicators" whenever possible.
10. If possible, advertise meetings in coffee shops, waiting rooms, pharmacies and malls, as well as in basic support agencies.

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