Posted: Oct 4, 2018

Welcome to our second Imagining Inclusion newsletter. We have been busy all summer and into the fall with many project activities, including the Telling Your Story and Being Heard program and the Peer Researcher Training. We have also been immersed in data analysis. We have a substantial quantity of data from the Photovoice sessions at Open Door Group and the Northeast Mental Health Team – including meeting transcripts, photographs, and photo reflections. Our data analysis team has coded all of the data and what has emerged are some very interesting and powerful themes.

One of the dominant themes that we have chosen to guide this newsletter is “The Complexities of Advocacy.” Advocacy takes many forms in the life of a person with lived experience of mental illness. Advocacy is sharing one’s lived experience and needs with others. It requires patience, openness and courage. In the words of one research participant: “We are not an inferior group. We all belong here and we will defend each other so this helps us to advocate.” For a person with lived experience of mental illness, advocacy is not always a choice; sometimes it is a life necessity. In the context of mental illness, advocacy is not a straightforward process. Research participants spoke about this complexity when sharing experiences of not knowing how to express oneself, accessing help, feeling like a burden, being misunderstood, feeling ashamed and fearing loss of supports and services. A research participant explained it this way:

“I meet people on the street all the time. We’re [people with mental health issues] down and sometimes they’re crying. I ask them if there is anything I can do? And they don’t know, they don’t know. They feel like they’ve lost everything and they can’t even imagine what the question for support would be like. What would that sound like?”

Participants felt that some of the challenges they faced when advocating required changes at organizational and systemic levels: “We need resources without discrimination and with hard work we can work together.” Yet challenging the mental health system can feel overwhelming and scary for someone with lived experience of mental illness.

Where to start? What if ‘complaining’ results in losing important resources and supports? Since mental health advocacy demands change at all levels of the mental health system, it can feel daunting for an individual with lived experience of mental illness.

However, amidst research participants’ feelings of discrimination and vulnerability was a strong desire to find their strength and courage to speak out. Photovoice and Telling Your Story and Being Heard provided opportunities to share one’s stories with others and can enable people with lived experience of mental illness to find a collective voice:

It make me feel better to express it and it makes feel better that if I’m telling my story to include the fact that other people also experience that. It’s not that you know, I’m special. There’s so many of us who are in that place.

We witnessed the power and energy of this collective voice when, in early July, 10 Telling Your Story and Being Heard participants gave their speeches to an audience of 30 people. The stories were similar but diverse.  With insight, participants spoke about their struggles and resilience. Enjoy this newsletter and the powerful voices from Imagining Inclusion’s research participants and team members.