Published on May 5th, 2015 | from CAMH
Mental Illness and ‘Community’: Oft used, seldom defined, and poorly understood
By Dr. Sean Kidd, Head of the Psychology Service of CAMH’s Schizophrenia Services and Assistant Professor with the University of Toronto Department of Psychiatry
The term “community” is a central concept in mental health reform and recovery conversations. These ideas are repeatedly referenced in documents such as the World Health Organization Mental Health Action Plan and the Canadian Mental Health Strategy. Clinicians routinely reference clients “getting back into the community”, and people affected by mental illness will often discuss being involved in a range of communities as key to the process of recovery.
Most will agree that community and one’s involvement therein is important. But what does this mean exactly? Are different stakeholders talking about the same thing when they use this word? If this idea of community is shaping how policies and services are developed, then understanding its meanings, implications, and the experiences tied to it is pretty important. Surprisingly, it is rarely defined, discussed in any depth, or otherwise unpacked. This is worrisome. When aspirational and abstract notions of community and what it can provide have driven policy and practice in the past, there have been disastrous results – such as the massive surge of homelessness that attended the first wave of de-institutionalization in the last century.
These were the issues that led us to initiate a research project, with funding from the Ontario Mental Health Foundation and the W. Garfield Weston Foundation, that has intensively examined community participation.
The study involved in-depth interviews over the course of a year with a diverse group of individuals with psychosis who are living in downtown Toronto. We had lengthy conversations about all aspects of community, toured neighbourhoods, and mapped out activities. We went on to interview nearly 100 brokers of community spaces in these neighbourhoods about community participation in relation to mental illness. These were librarians, coffee shop clerks, police officers, spiritual leaders and business owners. We learned some interesting things in these conversations. Community participation is important to the recovery process. But it is also complicated.
Many spoke about the stress and challenges in trying to access places they frequented prior to illness,poverty, unemployment, stigmatization and discrimination) – spaces where they felt that they belonged. One man spoke about the cost of occasionally going to a comfortable, mid-range restaurant where he could have a decent meal and a beer: “My workers don’t want to see me go there… they think it’s too much money for me to spend at one place. They want my money to last for the month. If I eat out, it won’t last… I have to go hungry for two weeks”.
Community contexts that revolved around mental health services and poverty were much easier to access, and brought a certain kind of belonging. However, for many, accessing such spaces involved a compromise that felt like a relinquishing of aspects of self. “I’d rather keep my distance [from spaces associated with mental illness] because if I’m in a group of people where everyone has schizophrenia, it’s like a reminder of the past – I get there thinking like I’m stuck in the corner.”
Systemic barriers greatly limited what could be attained. Living in extreme poverty limits mobility and access to community spaces in a myriad of ways. Living in environments where violence and multiple forms of victimization limit movements. This is particularly relevant for those who have experienced trauma in the past.Overall, these experiences spoke to how systemic barriers, stigma, and discrimination literally close doors. People seldom spoke about their mental health as posing a major limitation in accessing community resources. Indeed, it made me think of the predominant focus on individual ‘functional impairment’ in research and clinical practice, when a focus on ‘systemic impairment’ might better address the fundamental challenges that people with severe forms of mental illness face in engaging communities. This is clearly not an either-or situation, but imbalanced approaches will lead to incomplete solutions.
The brokers or purveyors of community spaces – working in businesses, mosques, and community services – spoke of efforts to foster inclusion. Most of them accurately recognized that mental illness is seldom visible. People with mental illness come and go through community spaces with us, around us, and about 20% of the time, are us. When people are visibly struggling, most could relate. This came in the form of having family affected by mental illness, having experienced mental illness, or at the very least recognizing and relating with an effort to overcome life adversity.
“I had a sense of that when I got laid off in 2003 and it took me two and a half years to find another job. I finally found this job…but for those years I wasn’t a contributor to society after having been that way for 30 years…there was a sense of lack of worth and I think to a large degree people here [customers with mental illness] see that every day,”.Individuals tried to make their spaces and interactions inclusive by being respectful and patient. Some businesses and spiritual spaces cultivated such a perspective as an ethos or culture. Our modest effort to respond to the interest expressed in creating inclusive spaces we developed a short film – highlighting those who do this well.Contrary to inaccurate stereotypes about dangerousness, people rarely spoke about negative experiences. When this did happen, most felt limited in what they could do – that there were no options for assistance in the gap between limited services and emergencies that required a call to the police.
In many ways, this work was the start of a conversation – one that we are currently extending to include lesbian, gay, bisexual, and transgender individuals with psychosis with a grant from the U.S. National Institute of Mental Health. We learned that there are remarkable and successful efforts to cultivate community participation but many more fundamental barriers.
We need a careful study of what is working in these contexts,to develop services and policies that are based in the realities that people are living in. This becomes all the more relevant as downtown city spaces are increasingly geared towards the needs and interests of demographics that do not include the people that we interviewed here.
Inclusive Spaces Video