Welcome to the first issue of the Imaging Inclusion Newsletter! This newsletter could be described as the community news of the community that was, and is, being created by the Imaging Inclusion project. We currently include contributors and a peer facilitator from the Research Team, along with research participants who now volunteer as contributors, or are active with the Newsletter Peer Task Group that conceives and puts these newsletters together. It is our hope as a peer task group that this newsletter will include and influence community stakeholders both inside and outside of the healthcare system, the general public, other folks living with the experience of mental illness, their caregivers, staff and the many professional folk who earn a decent living wage serving folks with mental illness who are typically deprived of the same. In this publication, we hope to discuss the project, share our experiences, advocate and raise consciousness around important issues and themes we see arising from the research. In this issue, we reflect on the Photovoice process from various points of view in our research community. Right off the bat, we felt the need to address food and food politics. How does a person for whom $10 is daily pocket change possibly even relate to someone for whom $10 is a week’s worth of groceries? In a sense we are asking of many educated and influential people, to invert the usual power/influence dynamic and be guided by society’s least credible and least privileged members. How is that for a wee challenge? We hope you will share your feedback and your comments on this newsletter with us! You can reach us with your comments at [email protected]. For more information, or to support the project, please visit us at http://douglascollegeresearch.ca/inclusionproject/ Summer 2014 Imagining Inclusion -‐ Issue # 1 My Health, Wellbeing, and Community IN THIS ISSUE: Imagining Inclusion Dr. Colleen Reid p.1 My Photovoice Experience Iris Nine p. 1 Politics of Free Food Trent Halliday p.2 Japanese Tea Ceremony Nikola Durity Marin p.3 Collaboration Ania Landy p. 4 Project Report and Updates p. 5 WORD CLOUD CREATED BY RESEARCH PARTICIPANTS FROM THE IMAGINING INCLUSION PROJECT Imagining Inclusion: By Dr. Colleen Reid Inclusion began in September 2013 and will run until August 2015. I met Maya Alonso a few years ago when I was supervising a therapeutic recreation practicum student at Open Door Group. We had a long conversation about the challenges facing the therapeutic recreation (TR) profession. TR uses leisure and recreation in individual and group settings to build community inclusion, health, and well-‐ being. Open Door Group, and in particular the thrive program, provides leisure and recreation opportunities for clients with mental health issues. Although most thrive clients believe that the program is important for their health and wellbeing, it has been difficult for thrive to document changes in their clients’ lives. In this project we aim to answer two research questions: We decided to collaborate on a community-‐based participatory research project and received funding from the Vancouver Foundation. Imagining 1. How do individuals living with mental illness experience community inclusion, health, and well-‐being? 2. What are meaningful, practical, and relevant ways to represent community inclusion, health, and well-‐being for those living with mental illness? We used Photovoice, a method of collecting data that involves research participants taking photographs of their lived experience, to answer the first research question. Currently we are working with 6 research participants to analyze those data. The photographs will become part of a photo exhibit, which will occur later this fall. This fall we will also begin to work with a group of community stakeholders to address the second research question. We will report on our progress with this in the next e-‐newsletter. We have two broad research questions: 1. How do individuals living with mental illness experience community inclusion, health, and well-‐being? 2. What are meaningful, practical, and relevant ways to represent community inclusion, health, and well-‐being for those living with mental illness? In this project individuals living with mental illness work with undergraduate students from Douglas College in a Photovoice process, manage and analyze data, and guide knowledge translation and exchange activities. Project findings will be disseminated to a diverse group of community stakeholders via a photo exhibit, e-‐ newsletters, and an evidence-‐based tool kit that will help with the design and implementation of TR services for people living with mental illness. A community-based participatory research collaboration funded by IMAGINING INCLUSION Issue # 1 2 My Photovoice Experience: By Iris Nine, Photovoice Participant An acquaintance of mine mentioned that Open Door Group (ODG) offers digital photography classes. I attended an orientation session at ODG soon after. Within a couple of weeks, I was attending digital photography classes. While attending the classes I learned about the Photovoice project. I was curious about it and attended a one-‐on-‐ one interview. The student who interviewed me asked me pertinent questions regarding: my income source, date of birth, etc. She was very clear and concise and we established a relationship of trust for working together throughout the Photovoice Project. After the interview, I decided to join the project because I thought it would help me become a more skilled photographer. The student worked one-‐ on-‐one with me to explain the workings of the camera. She asked what ideas I wanted to convey and what questions I wanted to answer such as community/inclusion/exclusion. In the beginning, when the project was discussed, the participants were given detailed information about the project and what we were being asked to do and what the intended outcome of the research was. I found myself physically tired after the meeting. I’m very sensitive to other people’s energy. There were a lot of questions raised by the participants. From my perspective the research team was always clear and concise when conveying what was being asked of the participants and the team established trust among the participants. Later we were divided into smaller groups to discuss individual’s photos. We were given guidelines to frame our response to the pictures. I paid close attention to each photographer and listened to what they wanted to convey with their photos. I felt compassion for what they experienced. I understood the message they were trying to convey. One person in our group was very critical with his comments about another participant’ photos. He criticized the technicalities of how the picture was taken, i.e. the photo was too dark or out of focus. I listened without speaking out, to say that he was behaving inappropriately. I thought that was the role of the facilitators to correct. I was surprised that nothing was said until the next session when the same participant reacted in the same manner as the previous session, then the facilitators, addressed the situation. Later we were divided into smaller groups to discuss individual’s photos. We were given guidelines to frame our response to the pictures. I paid close attention to each photographer and listened to what they wanted to convey with their photos. I felt compassion for what they experienced. I understood the message they were trying to convey. The first time I showed my picture of a community garden I was surprised by the criticism/ questioning of the City of Vancouver’s judgment in approving the expense and the participation in the creation of a community garden. I felt as though I had to speak on behalf of all gardeners and participants who helped in creating the garden to justify and defend the outcome and reasons for approving the garden. Throughout the Photovoice project I have been treated with dignity and respect. I returned to the project for the second phase of selecting which photos to display in public. I was really keen on the idea. I quote, “a picture speaks a thousand words.” At the exhibit, people from all professions and incomes can see into another person’s lived experience from a different spectrum. There is a writing component to the project as well. This allows others to report and express their experience of the project from their perspective. This is my story. I chose the writing component because I want to strengthen my writing ability and we could only be in one group in the peer task group. The Politics of Free Food: By Trent Halliday, Photovoice Participant Losing my income was a shock. My time is just as full as it was when I was still earning money, but all my activities are donations to society, and their payoffs take the form of social capital–I’m repairing my reputation, as well as striving to improve my physical health. To survive, I now live ascetically. Rent is priority number one; food is priority number two. Other ongoing expenses, like treating my acute dental condition, or like replacing my stolen bicycle, are unaffordable to me-‐-‐now, and perhaps forever. I can only meet any expenses other than rent and food, (even my phone bill!) by scrimping on my food budget—by eating less and by finding sources of free nourishment Food banks, churches, Food Not Bombs, and dumpsters have been my sources of food, but the quality and quantity of these donations and discards is variable. Some people (for example, diabetics) have special dietary needs, and churches gain reputations for the quality of their offerings. Some of the sources in the DTES are regularly attended by a rough crowd—people complain about violence—so the more easily intimidated among our disabled population avoid those high crime areas. Today, a youth standing directly ahead of me in line for food at the local community center took out a syringe and publicly, in broad daylight, injected himself with some horrible concoction. A community-based participatory research collaboration funded by IMAGINING INCLUSION Issue # 1 3 Many of the people I know would return only reluctantly after witnessing such a sad spectacle. Uneasy about local food security, I investigate volunteer opportunities in the hope of securing a steadier group of sources: does volunteering at places like the Food Bank, Quest, and the Carnegie Cafeteria yield edible rewards. Can I get cheap or free food like at the Clubhouse and MPA? Does Sunrise Market offer discounted food, even though I can rarely afford to buy groceries even at these sources? The informal economy offers greater opportunities for people deemed “high functioning”. Those who can network, people who can stand in line for hours outdoors in all kinds of weather, people who know how to defend themselves—it often seems that social capital is awarded to the least marginalized, most capable patients. The most crucial form of social capitalism is the trading of vital information—those who orient themselves to the subculture's norms realize the different locations, and other characteristics of community kitchens are now themselves a form of currency, and reasonably expect reciprocity. Like many others in my category, I'm vividly aware that government policy could change overnight and all my supports might suddenly vanish. In our subculture, we compete rather than equally share resources: food, lodging, computer time, and health care are becoming increasingly scarce. Every day we depend, dangerously, on charity rather than on legislation. From the available resources, I have selected three religious groups whose fare is vegetarian, healthy and serve same food that members of their congregations also eat. At one point, a churchgoer invited me to perform some token freelance work, more a symbolic repayment than an essential task. I offered to clean floors in return for food—I used to janitor professionally, and floor work was a task I could do for hours without significantly aggravating my chronic symptoms—but I was told this service was already being taken care of. another temple in a different city instead. I prefer not to be expected to socialize, join, or even listen to a sermon, since my present situation keeps me so busy I sometimes neglect my health. To me, it seems that few members abuse the system, and many of us make a point of sharing with those less fortunate. If members try to claim more than their fair share, they are shamed, ostracized, or otherwise penalized by their fellow recipients. I've joined some of the clients' informal alliances. Friends may alert other friends to every opportunity, rather than broadcasting the availability of some of the rarer goods and services to everyone who claims to need them. The “higher functioning” clients become more successful at finding and using these resources, while the “lower functioning” patients are often helpless to compete unless they are well supported. There can be a similar distinction between clients like me, whose challenges have been "acquired" and those with "congenital" problems (who are more accustomed to being considered second-‐class citizens; and whose ability to access the available options might be severely compromised). Our lessened participation in the formal economy necessitates our increased reliance on social capital. For those of us who are not socially adept, poor networking and haggling skills can result in hardships unless a peers and/or professionals intervene. The fastest and easiest way for me to earn my own social capital will be to educate myself thoroughly about every aspect of this subculture, so that I can explain complex problems in easily comprehensible terms, rather than using jargon and subject-‐specific framing ideas. Newcomers to our system face a steep learning curve if they're unfamiliar with concepts in law, social services, exercise management, nutrition, and so on. Peer support is the bedrock of any intentional community and it is my peers who understand the struggles of competing for increasingly scarce resources and services. Today, I learned that a Hindu temple is being renovated, therefore our delicious Sunday feasts will not occur at that address for the next few months, but already I'm looking forward to visiting Japanese Tea Ceremony, (or called Chado the Way of Tea) Snacks, snacks, snacks and Research-as-Ritual: By Nikola Durity Marin, Peer Researcher Some of my brushes with Japanese culture have changed me forever. One of these sites of influence is Japanese tea ceremony, often called a “quintessentially Japanese” approach. Implicit in this tradition, from what I have learned, is the upholding the mutual respect for the roles of host and guest. I guess you could say I have some “tea values”. This research study sets out to honour the point of view, expertise and lived experience of poor, oppressed, excluded and scientifically objectified people. As a peer researcher/native informant with a holistic approach, for me, mutual respect is a key ingredient in the mix for both researcher and researched to function in productive harmony and alliance. Add to this the socio-‐economic context that places the participants at the vertex of an inverted pyramid of armies of professionals i.e. doctors, nurses, therapists, case workers, social workers, even peer support, all collecting a wage that represents a certain quality of life. Participants on the other hand, reap few or no material benefits relating to their condition(s) that they can possibly ever A community-based participatory research collaboration funded by IMAGINING INCLUSION Issue # 1 4 directly benefit from, especially in order to sustain themselves and thrive in a healthful way in daily life. In other words participants are our bread and butter, nay our daily $3 croissant and our $5 coffee. The same system that deprives “them”, privileges “us”, the “getting paid” people. Circumscribing these oppositional realities with a ritual of mutual respect, while treating the research process as a ritual or “tea ceremony,” gives us a third space, “the tea room,”-‐ a virtual space where we can meet as appreciated and appreciative hosts interacting with welcomed and honoured guests. I took on the role of “snack consulting” precisely so I could host and fuss over guests in this cultured way. My aim was to provide happy, healthy and holistic snacks in a holistic/food therapy modality targeting emotional outcomes such as anger, depression, sadness and anxiety. Fruit, vegetables, and proteins were centralized nutritionally. Variety and taste was emphasized as many participants have either limited food or limited food choices. This hosting approach in practicality means we serve and fuss over our guests a lot. This does not appeal to everyone. The concept of service here is also not a western master/servant paradigm where the servant has low respect, but closer to a Buddhist or yogic paradigm of spiritually motivated devotional acts of the seeker of knowledge. Either way, it makes sense that a well-‐treated guest will want to stay or to return. Another aspect of tea ceremony that applies to research-‐as-‐ritual is “ichi-‐go, ichi-‐e”. This is often translated as “one time, one meeting,” or “one encounter, one opportunity”. A sense that each meeting is singular, never to happen again is something I love about this work and about working with offbeat and avant-‐garde individuals in general. At this point in time the research project is a little offbeat and avant-‐garde for trying to take crazy people seriously! It is a moment that makes me smile because crazy people already know that we know what we know. It is others, “normies” that rob us of credibility with labels in order to perpetuate the myth of their superiority and credibility and entitlement. By taking people with mental illness as credible advisors in an intellectual inquiry, we have a unique opportunity to re-‐inscribe the norm from a collaborative and inclusive point-‐of-‐ view. For these reasons, I believe that an exchange of respect and goodwill towards the present and future of our two meeting parties continues to be essential aspect of ”hosting” this research-‐as-‐ritual. For me, this aspect of Asian traditional holistic approach exists outside the accepted western intellectual paradigm, but nonetheless compliments its aims very soundly. The research and its outcomes will, we hope, endure. These “tea times” where our minds meet and create new pathways and possibilities for the future are unique and will never happen the same way again. Collaboration: By Ania Landy, Project Coordinator It’s been almost a year since I officially joined the Imaging Inclusion Photovoice as part of the research team has been a wonderful experience, full of unexpected challenges and rewards. I have had memorable experiences and learned many meaningful lessons from the participants and my colleagues, but there are a few things that make this journey particularly rewarding for me. First of all, I feel honoured to be part of the research project where lived-‐ experience and collaborative learning are of the utmost importance. Working in an environment where knowledge is built and shared freely has offered me a wonderful opportunity to grow, not only as a research team member but most of all as a human being. From my colleagues on the research team I have learned to embrace the process and allow the project to evolve over time. Collaborating with such a large and diverse group of people has also taught me that power within the research can be shared effectively without compromising the integrity and validity of the research. The experience of working directly with the participants, looking at their photographs, and listening to their stories left me with a renewed sense of humility and a desire to seek insights and understanding in my future research endeavours. Thank you to all the participants who opened their hearts and shared lives with us. Your photographs and your stories often moved me deeply and challenged my own perceptions of social inclusion, social exclusion, health and wellbeing. I am also grateful to share this journey with such a dedicated and hardworking group of individuals. I am proud of the work we have accomplished so far and can’t wait to take on all the new challenges and exciting endeavours that lay ahead of us! project as a project coordinator; and what an adventure it has been! Working A community-based participatory research collaboration funded by IMAGINING INCLUSION Issue # 1 5 Project Report and Updates 1. Photovoice Participants To advertise the project and recruit participants, we organized 4 information sessions at ODG in December and January. Maya and TR staff at ODG also promoted the project through t heir ongoing thrive programs. Interest in the project and level of the participants’ engagement exceeded our expectations. Initially 46 ODG members signed up for the project. Of these, 38 individuals signed consent forms and completed intake interviews. Six participants withdrew from the project during the first two sessions for variety of reasons (e.g. group composition, conflicting schedules). A total of 32 participants attended Photovoice training and participated in weekly photo-‐sharing and group discussions. All 32 completed the 10 weeks Photovoice process. 2. Photovoice Sessions (PV) sessions. The Photovoice training was facilitated Between January and March 27 2014 we conducted 10 Photovoice the research project, Photovoice ethics, and basic in large groups (PV1 to PV4) and included: introduction to photography training. After completing, the participants were divided into 4 cluster groups (up to 10 participants each). Participants met in clusters weekly over the period of 5 weeks ( PV5 to PV 9) to share and discuss their photographs and review photo-‐taking questions. The final Photovoice session (PV10) was dedicated to celebration and evaluation of the project. November 1, 2013 – May 31, 2014 3. Photovoice Data We used various data collection methods to gather data during the Photovoice phase of this project. All participants (32) completed intake interviews. Each participant submitted 8 photographs (256) and 8 corresponding photo reflection sheets (256). All 16 cluster meetings (4 per week from PV5 to PV9) were audio-‐recorded and transcribed. In addition, students recorded field notes from each Photovoice session. Currently, we are working on transcribing, uploading and organizing the data on NiVvio 10. The research team has started weekly meetings with a group of participants to identify potential gaps in data, create code book and discuss emerging issues, themes and theories. 4. Peer Researchers Two peer researchers hired in October 2013, Amanda Berg and Nikola Durity Marin, worked 15 hours/week during the Photovoice phase of the project. Their work focused on developing the Photovoice manual and planning, organizing and co-‐facilitating cluster meetings. Currently Amanda and Nikola are working on planning and facilitating the Peer Task Groups. 5. Research Assistants rd In December 2013, two 3 year Therapeutic Recreation students, Katie Koeing and Suezin Kang, were hired as research assistants. During the Photovoice phase of the project (Jan-‐March 2014), their responsibilities included: completing intake interviews, supporting participants through the Photovoice project (e.g. helping with photo reflections, conducting weekly reminder phone calls) and participating in research team meetings. In April 2014, a third research assistant, Radka Prihodova, was hired to work on the project over the summer. Since April, Katie, Suezin and Radka have been working on transcribing audio recordings and meetings one-‐one with participants to assist them with completing their photo reflections. In addition, Katie has been working on uploading and organizing data in NVivo 10 and Suezin on developing project’s logo and website. A community-based participatory research collaboration funded by IMAGINING INCLUSION Issue # 1 6 Project Report and Updates November 1, 2013 – May 31, 2014 6. Student Task Group Four Therapeutic Recreation degree students from Douglas College – Cynnimon Rain, Radka Prihodova, Katie Koeing, and Suezin Kang – joined the “Student Task Group” in the winter semester (Jan-‐April 2014) as part of their coursework for the Directed Research Studies course taught by Dr. Colleen Reid. They participated in the Photovoice training, attended Photovoice sessions, recorded field notes of their observations and reflections, and assisted in organizing Photovoice sessions. 7. Peer Task Group At the beginning of May, participants who decided to remain involved in the project joined one of the three Peer Task Groups: (1) Newsletter and Video Documentary, (2) Data Analysis and Photo Selection, and (3) Photo Exhibit. Currently, we have 18 participants continuing their work with the project. A few participants who are currently busy with other projects are interested in joining us in July. Each Peer Task Group is composed of research participants and research team members. The Peer Task Groups are scheduled to meet weekly throughout the summer. The early discussions in the Analysis Peer Task Group (#2) are extremely rich and interesting. We have submitted an ethics amendment to Douglas College to enable us to audio record these conversations (pending). 8. Project Evaluation Between January and March 27 2014 we conducted 10 Photovoice (PV) sessions. The Photovoice training was facilitated in large groups (PV1 to PV4) and included: introduction to the research project, Photovoice ethics, and basic photography training. After completing, the participants were divided into 4 cluster groups (up to 10 participants each). Participants met in clusters weekly over the period of 5 weeks (PV5 to PV 9) to share and discuss their photographs and review photo-‐taking questions. The final Photovoice session (PV10) was dedicated to celebration and evaluation of the project. 9. Knowledge Transfer and Exchange Activities -‐ -‐ -‐ -‐ Colleen Reid presented an overview of the project to the TR Advisory Committee in March 2014. Presented at the annual Canadian Therapeutic Recreation Association Conference in Banff, May 2014. Their presentation included an overview of the project and explored ways of fostering innovative community-‐ academic collaborations. The presentation sparked a lot of interest and drew a large audience (50 people -‐ ¼ of conference attendees). Project logo and website-‐ http://douglascollegeresearch.ca/inclusionproject/ The Photo Exhibit Peer Task Group is planning series of exhibits and road shows for fall 2014 to raise awareness of issues of stigma and exclusion and the meaning and importance of community inclusion for individuals living with mental illness. A community-based participatory research collaboration funded by
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