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It's About Time: The Significance of the Centre Block Demolition for Former Residents of the Woodlands Institution by Meaghan Feduck A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SOCIAL WORK in The Faculty of Graduate Studies (Social Work) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) September 2012 © Meaghan Feduck, 2012 Abstract The social history of people with intellectual disabilities, namely their confinement in large institutions for generations, is an emerging and troubling part of our Canadian historical landscape. Deinstitutionalization efforts currently underway involve acts of reckoning and constructing new approaches to including all people in civic and community life. The public witnessing of the Woodlands Centre Block demolition on October 18th, 2011 provided a site for which to take up these efforts through collaborative research. Using theoretical frameworks of memory studies, emancipatory disability research methodology and critical studies, the study engages former residents of Woodlands to construct an understanding of the significance of the event. By extension, the process of testifying to the event allowed for expressions of citizenship, collective memory, and active participation in driving the course of my findings in this research. Findings suggests that the former residents in this study actively participated in the processing of their past, the transmission of legacy, and the stewarding of the future in relation to their experiences at Woodlands. Participants strongly connected the Centre Block with a collective memory of abuse and mistreatment at the institution memory that is in active emergence and negotiation. The building's demolition provided both personal and political significance to former residents. Both the demolition and the study generated a discourse that evokes our social responsibility towards preventing abuse and ensuring everyone has a voice. These findings are consistent with current efforts to deinstitutionalize disability support systems in Canada, and suggest ongoing and inclusive ways to respond to past wrongs in this area. ii Preface This research, It's About Time: A Qualitative Study of Former Residents Description of the Significance of the Woodlands Centre Block Demolition has been approved by the University of British Columbia Behavioural Research Ethics Board certificate H1103099. iii Table of Contents Abstract ........................................................................................................................... ii Preface............................................................................................................................ iii Table of Contents .......................................................................................................... iv Acknowledgements....................................................................................................... vi Dedication ..................................................................................................................... vii Introduction..................................................................................................................... 1 Context and Historical Background ............................................................................. 4 Woodlands - 118 Years of Operation .................................................................................... 4 After the Closure ..................................................................................................................... 7 The Demolition, Development and Future of the Woodlands Site ................................... 12 Review of Related Literature ....................................................................................... 15 The Legacy of Institutions.................................................................................................... 16 An Analysis of the Inclusive Research Agenda ................................................................. 23 Memory Studies, Place-making and Testimony ................................................................. 29 Methods ......................................................................................................................... 34 Sampling and Recruitment................................................................................................... 35 Data Gathering Methods....................................................................................................... 37 Participants............................................................................................................................ 41 Data Analysis Procedures .................................................................................................... 43 Trustworthiness and Validity of the Research ................................................................... 44 Findings and Interpretations ....................................................................................... 47 Barb Westfield ....................................................................................................................... 47 Richard McDonald................................................................................................................. 48 Carol Dauphinais................................................................................................................... 49 Pamela Kerswell .................................................................................................................... 49 Shelly E. Starr ........................................................................................................................ 50 Processing the Past .............................................................................................................. 53 "Lots of things went on in there" (Shelly)..................................................................................... 53 "It's horrifying to look at" (Shelly)................................................................................................. 55 "There's an end to this creep" (Carol). ........................................................................................ 56 "They will say yes, it did happen" (Richard). ............................................................................... 58 "It's not easy, Meaghan" (Barb)................................................................................................... 59 Transmitting the Living Legacy ........................................................................................... 60 "It's part of my job" (Barb). .......................................................................................................... 61 "I would like things to occur to you…" (Carol). ............................................................................ 62 "Some people don't understand" (Carol). .................................................................................... 64 "I enjoy helping others" (Barb)..................................................................................................... 68 Stewarding the Future .......................................................................................................... 70 "The site is going to be way better" (Richard). ............................................................................ 70 iv "There will be no more institutions built in BC ever again" (Richard). ......................................... 72 "Now we can do things that we want to do" (Richard)................................................................. 74 "Let them look at life differently" (Carol). ..................................................................................... 75 Discussion and Implications ....................................................................................... 77 Relationships Between the Themes .................................................................................... 77 Relationship with Existing Literature .................................................................................. 79 Methodological Reflections.................................................................................................. 81 Limitations and Cautions ..................................................................................................... 83 Implications for Policy and Practice ................................................................................... 85 Implications for Further Research....................................................................................... 87 Concluding Remarks ............................................................................................................ 89 References .................................................................................................................... 90 Appendix A: Sample Letter of Recruitment ........................................................................ 97 Appendix B: Letter of Consent for Participants ................................................................. 99 Appendix C: Statement of Interest Form .......................................................................... 103 Appendix D: Interview Protocol..……………………………………………………………….106 v Acknowledgements For the support, suggestions and thoughtful input on this work I am deeply grateful to the members of my supervising committee, Tim Stainton, Pilar Riaño-Alcalá and Rachelle Hole. I have been very fortunate in the past five years to be surrounded by many wonderful teachers, both inside and outside the University. To the leaders of the Community Living and People First movements in Canada, I am indebted for their wisdom. Thanks to Fred Ford and Richard McDonald for their extra support and for taking care of me through this process. I am honoured to have had your ears and hearts for a short time in completing this work. And, for all of the turmoil that my partner Bartosz and my family have endured, I thank them for their understanding and integrity. vi Dedication For the man with the hose. The man was hosing the actual tower down by a water hose. It's to keep the dust down, you know? During the service. Cause you don't want that dust going on the - on us. Right? You don't have all that powder, all that dust flying around. It's just to keep the dust down, you know? They keep the dust down by hosing that as they're bringing the tower Centre block tower down. So people were able to see it come down. -Shelly E. Starr vii Introduction I first became interested in learning about institutions when I heard a former resident of Woodlands speak at a screening of the documentary film, From the Inside/Out (BC Self Advocacy Foundation, 2000). He was powerful. He captivated a room full of support workers, vocational counsellors, group home staff, and sheltered workshop supervisors. I had heard stories from my father, who years ago worked in an institution in Mount Forest, about custom-made Velcro clothing that enabled staff to change patients without requiring them to get out of bed. The problem was the Velcroclad patients were perfectly capable of walking. Years after the Velcro story, an old man came out of an institution and landed in a group home where I was working. Everything was new to him: traffic lights, sidewalks, store clerks, his own bedroom. He called me "Ma'am" and kept asking me about the fate of his day, the answers to which were only in his hands. I couldn't help him. Understanding the impact of a life of institutional isolation, neglect and abuse is not a natural urge for someone like me who has had a relatively trouble-free life. Nor is it even possible, because the layers keep on peeling back and perspectives of those who endured institutionalization are too rich and complex. But something about the way that former resident was standing in front of us, with a pride and a dignity that he was never offered in Woodlands compelled me to learn something from him. Perhaps in this spirit I am compelled now to learn, through this research study, something about people like him: those who were labeled with an intellectual disability and condemned to an institution like Woodlands, Tranquille or the Glendale Lodge; those who became their own parents when parent visits were forbidden; those who comforted others or were tormented by them; those whose release into the world brought misery and freedom. It is a tragedy when our social policy orientations cannot recognize the value of diversity in our families, in our workplaces, and in our communities. The antidote to this injustice is that we teach ourselves and others, and then influence policy makers to reflect such diversity despite the difficult knowledge we may be required to work through. In the past three years, my work with the BC People First Society has taught me the value of this pursuit, the profundity of the voices of institutional survivors, and the indelible refrain that institutions should be no more. Although many large institutions remain open and continue to warehouse people with intellectual disabilities, I had the privilege last October of experiencing the demolition of the Woodlands Centre Block. This building stood empty for years, a symbol of the enduring legacy of confinement, rejection, and mistreatment of people with disabilities in our province. The demolition included a public event that was hosted by the People First Society and attracted dozens of former residents and their supporters - about 200 people in all. The event provided an entry point for me to explore, through this thesis, the motivations of former residents to work on, bear witness to, and testify about acts of deinstitutionalization. This event, this performance provided a starting point for understanding the issues surrounding institutionalization. The following chapters contain the background, design, and results of my pursuit to understand the significance of this event in the lives of former residents. The research question that guided the study was: How do former residents describe the significance of the Woodlands Centre Block demolition? A seemingly simple question, the investigation itself brought up many challenging and complicated issues surrounding the 2 half-day event. Over the past year, I have spent time reflecting on what Susan Sontag calls "our habitual responses to others' suffering", and I have tried for myself to transform those relations that inform our apathy and denial (as cited in Lehrer & Milton, 2011, p. 7). A major theme running through this study is the labour of transmission and the legacy of former residents' contributions. The sharing and testimonials of the men and women who took part in the study was a gift, given and received carefully as a result of trusting relationships (see chapter on methods). These individuals took a risk in participating, and I cannot begin to express my gratitude to them for their trust. My wish is that the work done together can be mutually enriching. I realize the urgency and value of the ongoing efforts of deinstitutionalization, and hope that the following study, like the demolition, represents a small entry point into the endeavour. In the following sections, I attempt to set a contextual framework for my study by briefly reviewing the circumstantial and philosophical histories of Woodlands and other institutions. Then, I explore and articulate my investigative approach through reviewing methodological and theoretical literature that relates to my research interest. A description of my research methods is followed by narrative and thematic interpretations of the data generated through interviews with five former residents of Woodlands. In my discussion of the key findings, I draw conclusions and relate them back to existing literature in this area. I conclude that, while the contributions of participants to this study are rich and meaningful, there is a vast opportunity for more collaborative work to be done in the field of intellectual disability and deinstitutionalization. 3 Context and Historical Background Upon its closure in 1996, the then Ministry of Social Services commissioned local writer and former staff member of Woodlands, Val Adolph, to create historical and commemorative accounts of Woodlands from the perspectives of the former staff and documents from the public record. I draw on her texts here, as well as alternative accounts from advocates of deinstitutionalization, which have complemented my understanding of how Woodlands came to be, what it was like, and what happened during and after its closure. Woodlands - 118 Years of Operation The Centre Block, known also as the Centre Building or simply the "tower" was part of the first, last, and most prominent building to demarcate the Woodlands institution on a plot of land north-west of the Fraser River at Columbia Avenue and McBride Boulevard in New Westminster. The completion of its construction in 1909 signaled the beginning of what would become the province's largest and most wellknown institution of its kind, eventually spanning a distance of 64 acres, expanding to 21 buildings, and housing over 1400 patients and almost as many staff members at its height in 1959 (Adolph, 1996, p. 93). The original building, described by Adolph as "made of brick, two stories high and 125 feet long by 25 feet wide" was renovated and altered many times, and served many different functions throughout its life (Adolph, 1996, p. 29). Some of its uses over the years were a central administration office, visiting hub, living quarters for staff, superintendents and patients, dispensary, dentist office, laundry room, classroom, and dining room. In 1890, two wings built into its east and west sides became part of what 4 was called the Centre Block and sat together on top of the hill overlooking the Fraser River (Adolph 1996, p. 42). Until its demise in 2011, the building was prominently visible from Columbia Street in New Westminster, the Patullo bridge crossing over from Surrey, and the Skytrain between Columbia and Braid stations running east and west, and between Scott Road and Columbia stations running north and south. Indeed, the Centre Block stood as an icon, not only of the institution but also of the City of New Westminster, as it was often the first visible edifice as one entered the municipality. Several changes in the name of the institution, type of residents, and treatment approaches reflected shifts in public and professional opinions about people with intellectual disabilities. Researchers, critics and historians (e.g., Ford, 2011; Wolfensberger, 1975; Adolph, 1996) have chronicled pieces of this history, and a comprehensive review of this literature is beyond the scope of this study. Name changes throughout in its history saw the institution in New Westminster change from the Provincial Asylum for the Insane (1878), to the Provincial Hospital for the Insane (1897), to the Woodlands School (1950), to simply Woodlands in 1974 (Ford, 2011, p. 7). These changes followed shifts in foci on psychiatry, medicine, and education within the institution, with many nuanced approaches and "innovations" in the care of people who lived there. Despite these changes over the years, Woodlands remained a significant economic and political presence in the history of New Westminster, providing many jobs and much legitimacy to the municipality. Adolph (1996) chronicles the rivalry between the cities of Victoria and New Westminster during the time prior to confederation, and suggests that, after a long political battle, the awarding of the asylum was given to New 5 Westminster as a "consolation prize…for not becoming the capital city" (p. 24). For many years, the institution was the City's largest single employer (Adolph, 1996). It could be speculated that the economic contributions and employment created by Woodlands became a partial obstacle to its eventual closure, despite the warning signs that the institutional model was, and continues to be, highly problematic. Indications of the unsuitability of the institution, manifest both in physical conditions and problematic care approaches, were apparent from the very beginning. Early critics likened its physical appearance to a prison (Adolph, 1996, p. 26). Two public inquiries in 1877 and 1894 found the conditions inadequate to house the patients and staff (Adolph, 1996). According to Adolph (1996), reports of overcrowding were almost constant since its opening and remained a problem that reached a climax between 1959-1961 when over 1,400 residents were packed into the compound (p.93). This made it nearly impossible for staff to meet the needs of the residents and created a breeding ground for the spread of infectious disease, including (from research participants' accounts) diphtheria, jaundice, chickenpox, mumps, and measles. In 1976, the BC Building Corporation recommended that the Centre Block building be emptied "as soon as possible" due to its poor structural condition, but it wasn't until a decade later that the wards there were finally closed (Adolph, 1996, p. 108). In the mid-1970s, a collective called The Woodlands Parent Group formed with the aim of improving conditions for their sons and daughters living in the institution. They expressed outrage at the poor conditions and treatment their children were getting. The group first advocated for improved quality of care, then for real educational 6 opportunities, and finally for the complete closure of the institution (Adolph, 1996, p.110). In a 1982 documentary created in partnership with the parent group, video footage and narration capture the neglect and isolation of children in the wards (Pascoe). In the film, called Breaking Through, a narrator observes that: Among the 47 residents of ward 36, few can get special care…for most it is basic care at best…Inactivity withers the body and the mind. In institutions, no matter how well run, it is impossible to give everyone the love and care everyone needs to grow. It is impossible to deal with the individual needs for development. Here is none of the challenge that stimulates most of us. No expectations. (Pascoe, 1982). Although these and other warning signs were apparent throughout its history, demands for the institution's closure were not met until 1981, when the provincial government made a firm commitment to close Woodlands. While downsizing, relocation and reintegration efforts ramped up, the institution did not finally close until 1996 (Ford, 2011, p.7) After almost twenty years of lobbying by parents, residents, and community organizations, Woodlands finally closed its doors completely after 118 years in operation. After the Closure Even amidst the closure efforts, allegations of abuse at Woodlands were not met with much response until after its closure in 1996. After that, evidence began to emerge in droves about the transgressions that occurred while the institution was open. Following Adolph's (1996) publication, the BC Self Advocacy Foundation initiated an oral 7 history project with advocates and researchers. The project later became the basis for a collaborative multi-media art installation and documentary, From the Inside/OUT (P. Feindel, personal communication, September 10, 2012). The project, under the direction of artist Persimmon Blackridge, brought some of the deplorable circumstances inside the institution to light, from the perspective of former residents (BC Self Advocacy Foundation, 2000). Media coverage on Woodlands abuse was substantial in response to the art installation, and by 1999, more project work was evolving to respond to many former resident participants claims of a "disappeared" cemetery on the Woodlands site (P. Feindel, personal communication, September 10, 2012). Meanwhile, a former resident (whose name was protected for confidentiality) launched and won a lawsuit against the province in 1998 for the mistreatment he suffered in Woodlands and was awarded $100,000 (cited in Richard v. British Columbia, 2010). A second individual lawsuit was fought and won in 2001 by Alan Richard Boyd, who sued the province for $20,000 for wrongful placement and abuse in Woodlands (cited in Richard v. British Columbia, 2010). Around the same time, the Ministry of Children and Family Development commissioned an administrative review and report, published as The Need to Know in 2001 (McCallum). The report found and detailed ample evidence of abuse that occurred while Woodlands was opened. The evidence of abuse included instances of: …hitting, kicking, smacking, slapping, striking, restraining, isolating, grabbing by the hair or limbs, dragging, pushing onto table, kicking and shoving, very cold showers and very hot baths resulting in burns to the skin, verbal abuse including swearing, bullying and belittling, inappropriate conduct such as extended 8 isolation, wearing shackles and a belt-leash with documented evidence of the injuries including bruising, scratches, broken limbs, black eyes, and swollen face…(McCallum, 2001, p. 19). The report also provided groundbreaking analysis of the systemic nature of these abuses, arguing that the way the institution was run provided a breeding ground for such abuses to occur (McCallum, 2001). The McCallum Report (2001), as it became known, served as a beacon of proof for litigation and other responses to the myriad transgressions that befell the former residents of Woodlands. Further consultations and reports were conducted under various governmental mandates and community-based groups over the next years. The Self Advocacy Foundation along with the Woodlands Parents Group conducted a province-wide consultation with former residents and family members about the McCallum report. Subsequently, the BC Public Guardian and Trustee sought the views of former residents under their guardianship and released a report to this end. These and other responses provided more information about the abuse suffered by former residents, and included recommendations for redress by the government and legal action by former residents and their families. They also contained various recommendations about additional responses such as public awareness raising, commemoration activities, and community and arts-based initiatives that meet the needs of the victims outside of the judicial system. In 2002, following the release of the McCallum report, a class action lawsuit was filed under the name of one former resident of Woodlands. A group of people who were former residents of Woodlands, calling themselves We Survived Woodlands became 9 involved as eventual leaders in the suit (Public Guardian and Trustee, 2004). The class action suit continued in the form of various legal actions until 2010, when the class and province reached a settlement agreement. The court decision of August 30, 2010 details the specifics of the out of court settlement reached by the province and the class (Richard v. British Columbia). For contextual purposes, a brief summary of the main components of the decision is included here. The settlement allows for individual claimants to apply for compensation based on the specific harms they suffered while in provincial care at Woodlands. In total, approximately 1,150 class members are eligible to receive between $3,000 and $150,000 depending on their claims (Fowlie, 2011). The settlement uses the Crown Proceedings Act to exclude hundreds of former residents who left Woodlands prior to August 4, 1974 - a provision which has become controversial among former residents, media outlets and politicians alike (Burgmann, 2011; Fowlie, 2011; Hall, 2011; Kane, 2011). Those who are eligible to make claims must prove, through affidavits, hearings, and administrative records, the exact category and incidence of the physical, sexual or emotional abuse they suffered, according to pre-set categories and corresponding levels of compensation (Richard v. British Columbia, 2010). An original deadline of September 2011 was recently extended by one year, after which further claims will not be accepted. The burden of proof, exclusion of so many former residents, and tight timeline inherent in the ruling have all been criticized as an insufficient response to the abuse at Woodlands. At the time of writing, only three successful rulings have been made by court-appointed adjudicators for former residents to receive compensation through the settlement (Baziuk, 2012). 10 In addition to the class action lawsuit, many other actions continued to take place to address the wrongs enacted on former residents since the closure of the institution. In June 2003, the Ministry of Child and Family Development established an Institutional Legacy Trust Fund "as a goodwill gesture in recognition of the difficulties experienced by some of the residents of those places" (Times Colonist, 2006). Many former residents received one-time, flat rate cheques in the amount of $510 (Times Colonist, 2006). In June 2007, after years of planning and preparations, the Woodlands Memorial Garden containing the recovered headstones of many hundreds of former residents, was opened to the public. The garden was built on the northern tip of the Woodlands site, on top of the former cemetery that was long forgotten until memories of it surfaced during an oral history project conducted by a loose network of academics, advocates and community organizations. The garden repatriated many gravestones of former residents and provided a place for family members, friends and locals to commemorate the lives of those who lived and died at Woodlands. Some of these initiatives were in response to the recommendations made in the various reports, cited above. However, a specific request in the BC Self Advocacy Foundation's report, The Need to Make Amends (2003), seemed to have gone unnoticed until 2008. The recommendation states that many former residents would like to see the remaining Woodlands buildings torn down (BC Self Advocacy Foundation, 2003, p. 18). Then, in July of 2008, a series of fires destroyed much of the Centre Block building, save the main tower as it originally stood. The fires were met with much media attention and speculation about the cause of the fires, as arson was suspected (The 11 Province, 2008). These fires set the groundwork for renewed attention concerning further action at the Woodlands site. The Demolition, Development and Future of the Woodlands Site The 2008 fires are only one example of the transformations undergone at the Woodlands site since the institution closed in 1996. This section gives a brief summary of the events leading up to the demolition of the Centre Block, as well as some details on future plans at the site. Upon its closure in 1996, the land at the Woodlands site was sold to the Onni development group, who demolished most of the institutional buildings and built a threephase condo complex they called "Victoria Hill". Shortly after the land was bought, and as a result of the agreement made between the City and Onni, a land use study was conducted to determine the fate of the still-standing Centre Block building (City of New Westminster, 2009). The study included a public survey and hearings from interest groups. These processes were highly contentious, as the interest groups appeared to disagree about the historical and current value of the building. The final report noted "The Woodlands site has a charged history for many people and arouses strong emotions… Given that the Tower is all that remains of the original main building, there has been a vigorous debate about what to do with it" (City of New Westminster, 2009, p. 2). In the summer of 2011, through a highly administrative and bureaucratic process following the issuing of the report, it was determined that the building be demolished. The date was set for the demolition to occur on September 19th, 2011, but the BC People First Society appealed to the City and Onni for more time to organize for former residents to attend, and the date was changed to October 18th (McManus, 2011). The 12 Society then worked with the BC Association for Community Living and the City to coordinate a ceremony on the land in front of the building. As a part-time staff member of the Society, I had the privilege of assisting the Society to coordinate the event. Much effort went into the details to ensure former resident attendance and involvement in the ceremony. Logistic details included a media relations strategy, a welcome table with public education information, photography and video of the event, detailed programming of the ceremony, and most importantly for one former resident, a wheelchair accessible portable washroom onsite. Speakers during the ceremony included three former residents, the President of the BC People First Society, the Executive Director of the BC Association for Community Living, and an advocate and ally of former residents. Upon completion of a short speaking program, four former residents (two of whom are included in this study) gave the signal to begin the physical demolition.1 Most major media outlets had reporters present at the event, and over a dozen stories were run over two days regarding the demolition. Following the demolition day, no time was wasted in picking up on the next steps of the City's plan. Two of the conditions within the decision to demolish the tower were that a series of interpretive plaques be erected at the former site of the building; and that the City strike a task force to develop the interpretation, among other things. The Centre Block Task Force was made up of members representing the city heritage department, the city planning and development department, the New Westminster heritage 1 All of the participants in this study requested that their identities be revealed in this document; see the participant section of the methods chapter for more details about how participant confidentiality has been addressed. 13 commission and council, Onni development group, residents of Victoria Hill, community living advocates, and one former resident of Woodlands. At the time of writing, the design and content of the commemorative plaques are in development, to be erected at the site upon completion of Onni's latest development phase. For 133 years since its construction, the Centre Block building stood amidst the changing seas of social welfare and human rights movements. In its absence, a legacy continues to be constructed with as much care and attention as the original asylum. The next section explores the possibilities and particularities of such a construction. 14 Review of Related Literature Exploration into the social and historical dimensions of intellectual disability occupies a small but established corner of social science research. Lived experiences of thousands of people who have been labeled, segregated and confined in institutions for hundreds of years far outweigh the instances of scholastic reporting that have been conducted to document this history. Moreover, as institutions become a residual model for social care, these experiences can be animated with research to assist in a reconciliation of the past and the creation of a vision for the future with people with intellectual disabilities. My review of the literature on this topic follows three separate but related lines of inquiry. The first offers a critical understanding of the legacy left by large residential institutions, asking how various social responses might affect such an understanding. Researchers have provided some pathways into how we might better understand the phenomenology of institutionalization (e.g., Oliver, 1992; Goodley, 1996; Atkinson, 1989, 2010; Chappell, 2000; Walmsley, 2003; Frawley, 2010) so I pursue an analysis of the inclusive research agenda set among scholars of intellectual disability. My search leads me to suspect there is a gap in the literature with regards to inclusive research with and about people who have experienced the confinement of institutions. This gap reflects a lack of understanding and acknowledgement of the felt needs of people with intellectual disabilities in their experiences with institutionalization. I then move on to examine the field of memory studies and the relationship between memory and place. The demolition of the Woodlands institution can serve as a symbolic tool by which to examine and reflect with former residents. The potential for 15 voice begins to emerge through a theory of memory not conventionally related to the discourse of intellectual disability. I will explore some theories and concepts from the researchers that deal with place, memory and testimony (e.g., Riaño-Alcalá, 2002; White, 2000; Jelin, 2003), and offer these as an alternative approach to the problems posed by the former discussion of inclusive research. Running through these separate lines of inquiry are the concepts of participation and commemoration, which seem to be important motivating forces for the self advocacy movement, at least in the case of the Woodlands demolition. Throughout this review, I focus on ways to trace these motivations in existing work, in order to inform my own methods and approach to this study. The Legacy of Institutions Community Living approaches have now largely replaced institutional models as the status of people with intellectual disabilities has progressed and a social model of disability has given rise to new care and treatment approaches. Even still, academic discourses dealing with intellectual disability remain primarily of scientific, behavioural and medical substance, implying and inscribing pathology and incapacity on those who carry the label (Walmsley & Johnson, 2003, p.89-90). Since the 1980s, scholars have critiqued the medical and scientific rationales for intervention, which were widely adopted for a century and a half (e.g., Johnson, 1998; Malacrida, 2005; Roman, Brown, Noble, Wainer & Young, 2009). These alternative, cultural critiques of the legacy of institutions like Woodlands provide a deeper look into the conditions behind the segregation and oppression of this vulnerable group. The interests of the dominant class, it is argued, have played out and resulted in multiple transgressions against many 16 groups in Canada, and scholars have detailed the need to make right on such transgressions. Researchers suggest ways that survivors of institutional abuse can have their needs met, not least of which is in creating a legacy to ensure the preservation of history and heritage from the perspectives of victims and survivors (e.g., Godlberg, Porat, & Schwartz, 2006; Carr, 2012; Lehrer & Milton, 2011). Wolf Wolfensberger (1975) provides a theory of oppression and discrimination against "retarded persons", and its utility in securing political power and public approval for politicians. Leslie Roman et al. (2009) agree with Wolfensberger, asserting that the creation of Woodlands was part of a larger project of social control in the empire building and colonization of Canada. The idea of social control is picked up in Claudia Malacrida's (2005) argument that "institutionalized practices of humiliation and degradation operated to erase the very humanity of the institution's residents" (p. 535). These readings of the practices of institutionalization suggest that individuals confined in institutions are constrained and controlled by the "regulatory and organizing structures" of our social welfare system (O'Sullivan, Hartley, Saunders, Montgomery, & Fiske, 1994). The work of Michel Foucault (1980) offers an analysis of social institutions that describes the reproduction of power relations between the dominant and dominated groups. His theoretical framework evokes the 'systemic nature' of abuse captured in the McCallum (2001) report on Woodlands. This analysis is also consistent with broader studies of the abuse inherent in institutional culture: "the harms sustained can be understood as a by-product of institutions that overwhelmingly served the interests of powerful individuals and groups at the expense of [in this case] children and youth" 17 (Hankivsky, 2004, p. 68). Large institutions represent powerful administrative and personnel interests that have effectively prevented access to residents' stories (Malacrida, 2006). This poses an initial caution and threat against the creation of a 'balanced' legacy of institutions. A slightly more abstract critique of the legacy of institutions resides in a semiotic analysis of the architecture of institutions. This line of critical analysis explores the fact that the shared history of people with intellectual disabilities and their confinement in institutions is rooted in a physical place, an architectural stasis. Thus, the relationship between physical place and memory is worthy of investigation in this literature review. Returning to Wolfensberger's 1975 landmark work on the nature of institutions, we see an early focus on the physical site of the institution itself. Wolfensberger (1975) comments on the semiotic meaning of the institution's architecture, noting the ways in which physical space is used to control and remind patients of their subordinance to staff and doctors. He theorizes the buildings themselves as monumental objects used as public relations tools for local or regional governments who commissioned the buildings (Wolfensberger, 1975). The care of the residents inside, he suggests, is secondary to the initial exterior care put into the aesthetics of the buildings (Wolfensberger, 1975). Twenty-two years later, Deborah Park and John Radford (1997) pick up this theme in a special issue of the journal Health and Place dealing with the physical building of the "asylum". They offer a cultural study of the traditional asylum architecture, suggesting that the buildings themselves come to symbolize exclusion from a normal life in society, and the classification of patients and their scientific dehumanization through labeling, diagnosis and medical categorization. (Park & Radford, 1997). 18 These critical readings of the institutional legacy suggest that ideas about the care of people with intellectual disabilities have not emerged solely from medical discourses; rather, they are subsumed in a complex system of control, power and signification operating at a societal level. Indeed, it has become clear over the past three decades that the presence of large residential institutions for people with intellectual disabilities in BC represented real violations against the human rights of those inside the walls. It is now widely accepted that, at least in the past, transgressions against residents of institutions like Woodlands were common if not normal (Ahlgrim-Delzell & Dudley, 2001; Malacrida, 2005; McCallum, 2001;). Historically, many similar transgressions were also occurring elsewhere at the same time as Woodlands' legacy was playing out. In the early 1990s, much attention was being generated around the issue of institutional child abuse across the country, and the former Law Commission of Canada (2000) underwent a major initiative to expose the realities of this issue. The Commission's studies comprised dozens of large institutions housing children in residential schools, training schools, and facilities for children with various disabilities. Part of the work of the Commission was to identify a range of principles and restorative methods for meeting the needs of those who suffered transgressions (Law Commission of Canada, 2000). Among these recommendations, it was concluded that "redress programs are the official response that can be most effectively designed to meet the complete range of goals that have been identified" (Law Commission of Canada, 2000, p.9). These goals included criminal prosecutions and civil actions, compensation, systems of ombudsman, children's advocates and commissions, public inquiries, truth 19 commissions, and community initiatives. In addition, the Commission (2000) pointed out the importance of prevention activities emphasized by survivors of institutional abuse. This work contributes to our critical understanding of the legacy of institutions, as it points to a necessary focus on the effects of confinement and control on a myriad of social groups across the country. The previously cited reports by the BC Self Advocacy Foundation (2003), the Woodlands Parent Action Group (2003), and the Public Guardian and Trustee (2004) complement the work and recommendations of the Law Commission studies (Institute for Human Resource Development, 1998). Considering these works together, five considerations emerge with which we may measure the comprehensiveness of a response to the Woodlands abuse. These are: 1) acknowledgement and apology, 2) safety and support, 3) involvement and participation, 4) compensation, and 5) prevention, commemoration and education. This consistent typology of needs articulated in the literature, and our ability to meet those needs, has an impact on what will be remembered about the place and its inhabitants; the future legacy of Woodlands. How the legacy of the Woodlands institution evolves will be comprised of many components and will depend on responses from the government, the community, and individuals. Paramount in the determination of the legacy will be the involvement of former residents in designing these responses, particularly in regards to establishing an history and heritage narratives that reflect their experiences. Olena Hankivsky (2001) writes of the need for victims "to be included in the negotiation, design, and implementation" of any such responses (p.72). This is a crucial part of getting the voice of former residents heard and honouring their citizenship and inclusion rights in a 20 procedural act of redress. Public education, research, training for staff and consumers about abuse, and examples such as erecting monuments and establishing archives have the effect of ensuring former residents' accounts are included in the official history of Woodlands. Finally, in considering the concept of legacy, scholars have challenged the conventional and traditional notion of history and heritage, arguing that it produces onedimensional accounts that serve the interests of those in authority. Dominant narratives and counter-narratives are identified as being in competition with each other, although the former is more readily acknowledged in public documents such as textbooks, monuments, and political proceedings. Safrir Goldberg, Baruch Porat, and Dan Schwartz (2006) write, "Official history tends to produce accounts which shed positive light on the nation, its institutions and leading groups" (pp. 322-3). They go on to explain that the identity needs of dominant groups are more often addressed in historical texts than those of "outgroups" or victim's needs (Goldberg et al., 2006). Similarly, in their discussion of "difficult knowledge," Erica Lehrer and Cynthia Milton (2011) contend that representations of history and heritage in the form of public monuments, memorial events and museums are overwhelmingly located in the perspectives of dominant and powerful political forces. These representations are by and large "taken as an unquestioned good" and marginalize voices of opposition inherent in the given historical circumstance (Lehrer & Milton, 2011, p. 10). By contrast, Stephen Legg (as cited in Carr, 2012), conceives that "a complete and inclusive concept of the spaces of a nation can only be created by analyzing both its sites of memory and those of counter-memory." (p. 111). Rather than seeking to 21 achieve balance, Jim Ife (2008) suggests that there is a moral responsibility for groups and citizens to typify and rank competing claims against ethical and legal frameworks in order to value some needs to be heard over others. Specifically, he calls on us to uphold such universal human rights as dignity, respect, worth, standards, and protection from abuse (Ife, 2008). Ife (2008) strongly asserts that: Where there is a conflict, human rights have priority over other claims of right. In other words specific rights, claimed only for certain individuals or groups, cannot be allowed to contravene the fundamental human rights which belong to everyone. (p.12) Lehrer and Milton (2011) call for a "democratization of authority" in the decisions that guide historical curation and the establishment of legacy (p. 5). This would require a rethinking of whose knowledge we count as "expert", and of the nature of truth we are willing to accept. More importantly, it would require us to face new lessons and open ourselves to new liabilities from the past. Lehrer and Milton (2011) describe the idea of "museums of conscience" that "are increasingly turning to face our communities' 'never agains'" (p.5). The function of such museums - or monuments, or reflective gardens, etc. - is partly to educate and partly to transform social relations. Malacrida's (2006) study of Alberta's Michener Centre residents was motivated by such a transformative goal. Her study speaks to the "importance of collective memories in providing groups of people with a sense of identity and belonging, and the role of telling these memories in changing the broader history of a society" (Malacrida, 2006, p. 398). This line of inquiry in the literature considers the ways in which we understand how institutions like Woodlands came about, how we confront the realities of abuse and 22 confinement in our social history, and the conditions and opportunities for creating a legacy built on these realities. The literature argues that the involvement of those directly affected is a necessary consideration for the transmission of an institutional legacy. The next section looks at the methodological frameworks established to involve and include people with intellectual disabilities in conducting research to this end. An Analysis of the Inclusive Research Agenda Scholars have done a good job to point out that the knowledge and experiences of people with disabilities are vital to understanding the nature and future prevention of transgressions against this group (Malacrida, 2005; Johnson, 1998; Walmsley & Johnson, 2003). Nevertheless, scholarly research documenting the voices of the very people living in, or at risk of living in institutions has remained at a dull roar. Some such studies are pointed out below. In 1998, Kelley Johnson published a four-year qualitative study of women living in an institution in which she investigated participant views on the experiences of moving out. Through her work, she was able to incorporate the voices of the women in the process of their deinstitutionalization. Although she triangulated her research with accounts provided by the staff and families of the women, as well as with institutional case files, she was able to capture first person accounts of the ways in which the women experienced institutional transgressions (Walmsley & Johnson, 2003). Johnson's study achieved an important goal: to include the women in giving their testimonials of institutional life. Of her research, she writes, "my contact with the women provided a focus for a study of how the ongoing process of deinstitutionalization affected them and those around them" (Johnson, 1998, p.3). Interestingly, a major finding in her study had 23 to do with her own transformation in relationship to the women; she found herself "enmeshed" and directly involved in the wellbeing of the women as they moved out of the institution (Johnson, 1998). Claudia Malacrida (2005) conducted a study with former residents of Michener Centre in Alberta about their experiences in "time-out rooms", where residents were confined for "bad behaviour." Through the narratives of the individuals, Malacrida (2005) was able to gain insight into the effects of institutional practices on the residents, and gave voice to their experiences. The testimonial insights allowed her to draw parallels with notions of punishment and power conceived of by Foucault, as well as to critical theories that reveal the systematic dehumanization of the institutional model (Malacrida, 2005). These studies enable access to first hand accounts of the life experiences of institutionalized individuals, but taken together they are by no means a comprehensive explanation of what institutional life was like from the perspective of residents. Other texts, such as Geoffrey Reaume's (2000) Remembrance of Patients Past, interpret the memories of former residents living in institutions. However, in Reaumes' case, himself a psychiatric survivor, seldom does he credit or cite the specific people or testimonials that gave rise to his 362-page description of institutional life. Dorothy Atkinson and Jan Walmsley (2010) chronicle the involvement of people with intellectual disabilities in research about institutions, citing a few more studies that are relevant here. In creating a scholarly account of the social history of institutions, they find that "this work is only informed to a limited extent by reference to the many people whose lives were touched by intellectual disability policy and practice, and whose 24 experiences can contribute to a better understanding of history" (Atkinson & Walmsley, 2010, p. 274). They ultimately argue for a mixed methodology that takes documentary, expert and first-person accounts into consideration using triangulation as a tool for validity. There is an extensive body of reflexive work that champions the methodological practices of researchers doing "inclusive" or "emancipatory" research. Advocates document the benefits of involving people with intellectual disabilities in all aspects of scholarly work. Various writers have outlined research methods that attempt an inclusive approach to writing with and about people with disabilities. These writers tout participatory research (e.g., Chappell 2000; Garcia-Iriate et al., 2009; Sample, 1996), oral history (Atkinson, 1989; Atkinson & Walmsley, 2010), life history or biographical reconstruction (Atkinson, 1989; Atkinston & Walmsley, 2010; Goodley, 1996), and research partnerships (Barnes, 1992; Bigby & Frawley, 2010; Oliver, 1992; Stone & Priestley, 1996) as ways to practice inclusive/emancipatory research. Among some of the researchers who have actually practiced these methods, the benefits of including these voices in the research have been richly described (Malacrida, 2006; Roman et al., 2009; Walmsley & Johnson, 2003). These can be grouped into five categories. First, testimonials can bring about a deeper understanding of the injustices suffered in institutions, as well as the forces behind the infliction of suffering (Roman et al., 2009; Walmsley & Johnson, 2003; Malacrida, 2005). Secondly, they can serve to validate the memories of those who suffered (Malacrida, 2006; Walmsley & Johnson, 2003). Thirdly, they can provide warnings and guidance in future care initiatives, and urge a change in attitudes towards intellectual disability (Malacrida, 2006; Roman et al., 25 2009). Fourthly, using personal testimonies in research about institutions can play an emancipating or transformative role in individuals' healing and identity building, postinstitution (Malacrida, 2006; Roman et al., 2009). Finally, and perhaps most profoundly, Malacrida (2006) suggests that "telling memories from the margins is, in short, a political act" in that it has the potential to both rewrite history and guide future policy direction (p. 201). Scot Danforth (2006) boldly sets an agenda for this type of research, which he posits as follows: To the reader of disability research, the key questions are: What kinds of social identities for students with disabilities are offered by these descriptions?; What kinds of social association and community involving students with disabilities are made available?; How are our notions of diverse and inclusive society expanded, deepened, and enriched by these descriptions? (p. 341). In short, inclusive disability researchers have challenged themselves to engage in narrative methodologies in their rendering of the social history of people with intellectual disabilities. Turning back to Malacrida's (2006) conviction in the use of first-person testimonies in research, we see a methodological commitment rooted in narrative analysis. She points out that the limited space available for claimants' testimonies is insufficient in bringing about an overall better understanding of the plight of this group. Malacrida (2006) explains: "…narrative can be used by a broad range of people who have been harmed or marginalized by powerful institutions" to witness, affirm, and challenge aspects of social attitudes and lived experience (p.400). If using resident testimonies and other methods in research has such benefits, why aren't more people doing it? Indeed, it seems that inclusive research is more 26 preoccupied with making the case for itself than actually generating qualitative work with individuals whose lives have been affected by institutions. Separately, tools for inclusive/emancipatory research might assist in increasing the accessibility of people with intellectual disabilities to the research process, and of researchers to people with intellectual disabilities. But as a comprehensive research agenda, the approach seems lackluster and has been the centre of much criticism. There are a few reasons for this, spelled out below by some of the same scholars. Perhaps the most commonly experienced barrier to conducting said research is the issue of legitimacy. As Malacrida (2006) summarizes, "individuals with intellectual disabilities, because of their social positions and their economic, cultural and social capital, are vulnerable to discrediting" (p. 407). This is an acute problem in confirming any abuse of people with disabilities, as documented by Lynn Ahlgrim-Delzell & James Dudley's (2001) study of the outcomes of abuse allegation among this population. The authors found that, although much more vulnerable to abuse, people with intellectual disabilities living in congregate care settings have lower rates of confirmed abuse than the non-disabled population (Ahlgrim-Delzell & Dudley, 2001). The study concluded that the presence of a cognitive delay was not the primary cause of the difficulty, but rather the inadequacy of the system's ability to respond to the vulnerability and social isolation of individuals (Ahlgrim-Delzell & Dudley, 2001). Similarly, Malacrida (2005) documents the structural barriers that initially prevented her from gaining access to speak with residents inside an Alberta institution. Guardianship protocols designed to strip patients of their right to self-determination, governance boards' concern with the institutions' reputation, and prohibitive costs of 27 Alberta's Freedom of Information mechanisms were all cited by Malacrida (2005) as ways of preventing the voices of residents from being heard by researchers. A third barrier in conducting inclusive research is a particular service approach that sees caregiver roles as protective in nature. This ethic of care is often employed in the service system, perhaps an inheritance of institutional philosophies. Rebecca Hawkins, Marcus Redley and Annabel Holland (2011) argue that the duty of care incumbent on our support system often wins out over the promotion of autonomy among people with intellectual disabilities. This might translate as a reluctance to support former residents to address the institutional abuse they suffered - to have their voices heard, to tell their stories. Another dimension of this is a response to the problem that I have personally heard many times - that the provinces' duty to care for people in Woodlands was enacted according to the best practices of the time. Despite the fact that abuse and mistreatment has never been considered "best practice", there is an implication that the duty to protect and shelter people with disabilities is more important than the realization of their rights and obligations as full, participating citizens. This hinders the ability of individuals to participate and contribute to knowledge through research, among other things. Issues of subjectivity in scholarly writing have complicated the process and validity of giving voice to first person experiences as well. Rose Richards (2008) provides a rich exploration of notions of self and representation in academic writing, and warns that "socalled abnormal lives are controlled and normalized…through being written about" (p. 1720). Authors Arthur and Joan Kleinman (1997) are concerned with the appropriation of suffering, and the risk posed when people are pathologized as victims rather than 28 moral and political actors. Richards' (2008) view is that people with disabilities should be agents and not subjects of study. Although auto-ethnography and life history methodologies are consistent with this view, many other forms of inclusive research have not succeeded in resolving these delicate ethical issues. Finally, Mike Oliver (1992) issues a power analysis of the emancipatory agenda, suggesting that, as currently conceptualized, it may do more work to reproduce the same social relations that render people with disabilities powerless. My search for first person accounts of institutionalization (and by extension deinstitutionalization) reveals a discourse on the methodological concerns of an inclusive research paradigm, but less so a body of literature actually employing this methodology. Although the champions of inclusive research have set a careful and ambitious agenda, many issues remain unresolved. The challenges of creating an accurate and scholarly account of institutional abuse and trauma call the pursuit into question. Although it is important to know and acknowledge what has happened, one wonders if the well-documented and articulate narrative from outside the academy might suffice as documentary evidence. Alternatively, the involvement of people with intellectual disabilities in research efforts might better serve to describe the impact of institutional involvement and its implications. A third line of literary inquiry, outlined below, offers a new frame with which to approach this methodology in the case of the Woodlands Centre Block demolition. Memory Studies, Place-making and Testimony Memory studies is an emerging area of scholarly work, and has mostly been applied in instances of state repression, mass conflict and social transgression (e.g., 29 Riaño-Alcalá, 2002; Jelin, 2003; Patraka, 2001). However, a review of key concepts reveals that this academic discipline lends itself well to the gathering of former resident narratives. This orientation contests the need for objective or factual data that more traditional social sciences would see as legitimate. It postulates that the process of remembering a place actively constructs a knowledge and understanding of that place (Riaño-Alcalá , 2002). Multiple acts of remembering the Woodlands Centre Block, as former residents do in this study, create "circulating stories" that can provide an antidote against issues of legitimacy (White, 2000, p. 19). These acts also create a shared knowledge that Pilar Riaño-Alcalá (2002) calls a "community of memories in place" (p. 298). The act of remembering is an exertive labour, which Elizabeth Jelin (2003) posits is done in the name of others. Jelin (2003) and many other scholars in this area maintain that memory work is a social responsibility and act that transforms victims to active participants. Symbolic or performative acts, such as the public witnessing of the Centre Block demolition, offer opportunities for memory work to be done and meaning to be made. This theoretical orientation assists in accepting and expressing the wisdom inherent in these witness testimonies. The concepts relate well to the issues of intellectual disability and institutions, as both are sites of conflict, and both are involved in a dialogical process of meaning making. Similarly, studies in memory tend to emphasize the dynamic nature and process of remembering. That is, memories are never either static or concrete in their relation to any universal or positivist truth - rather, they are dynamic. Thus, theories of 30 memory would contest the need for objective or factual data that more traditional social scientists would see as "legitimate". Riaño-Alcalá (2002) makes some important links between place, space and memory which offer a new way of helping institutional residents reconcile the past and create vision for the future. She studies the ways in which city dwellers in Medellin, Colombia, make sense of their neighborhoods now rife with violence (Riaño-Alcalá , 2002). Through the testimonials of residents, she describes the practices of placemaking - that is, actively constructing a knowledge and understanding of the meaning of a place through the process of remembering (Riaño-Alcalá , 2002). This is what Vivian Patraka would call the creation of space (Patraka, 2001). It implies agency on the part of people occupying the physical space, and offers an active participation as described by Riaño-Alcalá (2002): "Place-making is a cultural activity that all of us 'do' in order to locate ourselves meaningfully in the environment we interact with" (p. 280). In describing these processes, Riaño-Alcalá (2002) offers insight into the strength of the people giving testimony to (re)create their neighborhoods. Jelin (2003) further examines the nature and purpose of testimony. She focuses on the nature of testimony in her work dealing with the 'labours of memory' (Jelin, 2003). She writes that traumatic experiences arising from instances of state repression give rise to the need for victims to offer "witness testimonies" as a way to better understand state transgressions. Such testimony goes beyond individuals' need for therapy and relief of their suffering, to a notion of duty and obligation to "testify 'in the name of others' as a 'delegative' narrator" (Jelin, 2003, p. 62). This implies a sense of social responsibility and transcendence from victim to active participant. 31 Jelin (2003) further describes the nature of the participation as a form of truth telling. She explains that the interaction between the testifier and the listener in itself creates a new idea and contributes to making meaning on a larger scale. The idea that "in [the] act [of narrative], a new 'truth' is being born" (Jelin, 2003, p.64) is reminiscent of the establishment of truth and reconciliation commissions in such instances as the Indian residential school system, the South African apartheid, and other human rights atrocities across the globe. Using testimonies of individuals with intellectual disabilities as a base of wisdom and knowledge flies in the face of a medical understanding of disability, and a scientific understanding of intelligence quotients. It refutes the need to balance verify stories with "fact", and understands the narratives offered as valuable knowledge. The significance of these descriptions can be tied together through Louise White's (2000) description of circulating stories: When people take circulating stories and transform them into personal narratives, they don't make them up; they deploy powerful and shared vocabularies in their accusations and confessions. That the vocabularies are shared gives them their power. (p. 19). Taken together, Riaño-Alcalá 's (2002), Jelin's (2003) and White's (2000) findings complement each other by creating a unique agency for the recipient of social transgressions. In the case of intellectual disability and institutions, memories of place and space collide and create a unique opportunity for meaning making. Others with similar pasts can share in a community of memory in place. The role of performance is a creative and active one that takes social responsibility and survival into account. 32 Rather than relying on researchers to "unlock" traumatic memories, researchers can listen to the testimony created by expert witnesses of social injustice. Current and former residents of institutions have access to the participation and activity that can make meaning both individually and collectively. This has transformative potential to realize the benefits of the inclusive research agenda, and a reflexive lens with which to pursue an exploration of the significance of the Centre Block demolition. 33 Methods Drawing on the theoretical frameworks of memory studies, emancipatory disability research methodology and critical studies, I designed a qualitative study to address my research question: How do former residents describe the significance of the Woodlands Centre Block demolition. My approach to the study followed my own philosophical orientation towards collaboration and dialectic understandings of truth and knowledge. Design features of the study are modeled after these research traditions and my commitment to what Linda Finlay (2002) calls a "participative approach" to research (p. 535). Consulting, privileging and interpreting the voices of people with intellectual disability labels in regards to my research question were of paramount concern (Finlay, 2002, p.535). Through a carefully considered process of interactions, I mined the memories of former residents of Woodlands for experiences of witnessing the Centre block demolition on October 18th. In order to do this, I needed help to anticipate how my research might impact former residents, and how issues of risk, influence, and consent might be approached with full integrity for this group. Taking pages out of the inclusive research discourse, I sought ways of designing the study that would produce equal power relations (Oliver, 1992). I adapted a collaborative model from Walmsley and Johnson (2003), and proposed a consultative partnership with the BC People First Society to advise me on design considerations as they relate to the research population (p. 211). The Society struck an ad-hoc committee on research to assist, be involved in, and learn about research processes. The committee also offered their involvement in the recruitment process, as they had records of member databases and RSVP lists from the demolition 34 event. In addition, they requested that an accessible-format report be available to them and their members upon completion of the study. Primary research participants were then recruited and interviewed using a semistructured interview guide (Creswell, 2006, p. 164). I used member checking to ensure my analysis was relevant and resonant with the participants (Creswell, 2006, p. 254). I analyzed the data for thematic content, and developed narrative summaries for each participant (Lieblich, Tuval-Mashiach & Zilber, 1998; Hole, 2007). More specific information about sampling, data gathering and analysis, and the participants themselves are described below. Sampling and Recruitment As mentioned above, the BC People First Society acted as a partner in recruiting research participants that matched a set of inclusion and exclusion criteria. I sought to recruit up to ten participants who are former residents of Woodlands, who have an interest in the demolition of the centre block building on October 18, 2011 and who were willing to be interviewed in person, or by phone or Skype. Participants were required to be over the age of 19 and able to communicate with or without support. I adopted an implicit assumption that people with labels of intellectual disability are considered capable to participate until proven otherwise. This view is consistent with the position of the Centre for Inclusion and Citizenship at UBC, and prevented any discrimination or exclusion on the basis of cognitive ability. The same tenet, however, had the effect of excluding from my criteria those people who fell under committee or adult guardianship agreements, or who are unable to reasonably communicate with or without support. I will elaborate on the effect of this exclusion later on in the in the 35 limitations section of my discussion. Through the collaboration with the BC People First Society, approximately twenty letters of recruitment were mailed out by the Society on my behalf to all those people who met the inclusion criteria (see Appendix A). To eliminate bias and selectivity in the sample, I was not involved with the mail-out, nor did I have access to information about the recipients (Maxwell, 2005). I was aware during this process of the potential that I may have existing relations with participants, but I adopted a conviction that there was no need to exclude these people. Instead, I ensured that consent procedures and data collection methods were designed to address and minimize potential issues of compliance, coercion, and conflict of interest (Miller & Bell, 2002). A sample consent form is attached to this document, Appendix B, for further clarification of this point. From my prior experience with communication and response rates with people with intellectual disabilities, it seemed like a good idea to include as many contact options as possible: i.e., phone number, email, mail, etc. A total of five people returned statements of interest forms included with the letters, directly to me (see Appendix C). The five respondents who chose to fill out the statement of interest form were then contacted directly to follow up. In my conversations with these individuals, I encouraged them to discuss their decision to participate with their support people or family and friends. One of these participants referred me to her key worker, who agreed to coordinate her participation, prepare her for the interviews, and support her during the interview process. A sixth participant was brought to my attention when I received a phone call from a family member concerned about his sister's participation. He told me that she had 36 received the letter from People First and had expressed interest, but felt that she needed to call on his support for her decision to participate prior to contacting me; thus began a series of conversations with the family member and support workers for the potential participant. In a collaborative way, we discussed the risks involved in the study, and reviewed the interview protocol for potentially triggering or "leading" content. Once a sense of trust and a support plan was developed with the participants' support network, the brother then signaled his support for his sisters' participation. Upon receiving the five statements of interest and discussing the study with the family and staff of the sixth, I made telephone contact to describe the research and consent procedures to the prospective participants. Where requested in two cases, I also mailed written descriptions of these to the participants. Upon reviewing the information and considering participation, one person opted out of the study, saying that they would "rather have closure" with their experiences at Woodlands. With the other five participants keen to get started, we scheduled and arranged the first interviews. I had initially planned for up to ten participants in the study, and after the Society mail-out and discussion with my faculty committee, I decided to limit the sample to six individuals. By the time the sixth participant withdrew, I was far enough along in the study to conclude that five participants would provide sufficient data and a "new and richly textured understanding of experience" (Sandelowski, 1995, p. 179); I did not pursue snowball sampling through participant networks. Data Gathering Methods Participants were asked to engage in two interviews lasting approximately 1.5 hours each, between March and July 2012. Scheduling the interviews required multiple 37 points of contact and coordination, as two of the participants involved their support staff, one required me to travel to the Fraser Valley, and another was interviewed using videoconferencing facilities. At the request of one of the participants, a short visit was conducted prior to the first interview in order to build rapport and trust. This visit was not recorded. With another participant, several phone conversations were necessary to arrange the videoconferencing, and this required mutual confidence building in, and learning about, the chosen method of technology. All of the first interviews were conducted privately, without support people present, which was the preference of the participants. There was one slight exception to this, where one participant requested a support person be present for the consent process prior to beginning the interview. These first interviews took place at participants' homes, a day program, and in the case of the videoconference, a community organization office (I was at the School of Social work using the videoconferencing facilities there). Prior to commencing each interview I reviewed the research and consent procedures with participants both verbally and in writing (Miller & Bell, 2002). The information was presented in a plain language format to ensure that participants could understand it (see Appendix B). Emphasis was placed on identifying, together, areas of potential sensitivity and risk given the traumatic nature of many experiences of institutional life. In each case, the participant took the lead in letting me know their coping strategies, emotional supports that were available to them, and their comfort level with sharing their stories. This experience of self-defining the boundaries and needs for participants can be seen as a way of shifting the social relations of research 38 production, transforming participants from objects to active subjects (Richards, 2008; Oliver, 1992, p. 109). I also took some time prior to commencing, to declare my own role in the research, experience in the field, and interest in the study. This process of defining and articulating our respective positions became a way to "manage the power imbalance between researcher and participant (Finlay, 2002, p. 539). Uniquely, all five participants requested that their identities be revealed in this study. A discussion of this last point follows in the next section. The first interviews used a semi-structured protocol (Creswell, 2006, p. 164). Appendix D shows the protocol that was used in the first interviews. The questions in the protocol were vetted through the BC People First committee for clarity and relevance, and designed to capture various dimensions of participants' memories of the demolition event: i.e., factual, emotional, stories and memories, and perceptions of significance. An open-ended question in the beginning of the interview generated a self-description of the interviewees, and these were used for narrative and holistic analysis of the data. The interviews were videotaped and audio taped for three reasons. First, the recordings allowed for accuracy and ease in transcribing the conversations. Second, the recordings freed me from the distracting and time-consuming process of note taking during the interviews. Third, videotapes were duplicated and copies were returned to the participants for their review and future use as they see fit. Upon completion of the first interviews, consent procedures were reviewed once again with participants. It was especially important to do this before and after each interview because each of the participants requested that their identities be revealed in this study (Miller & Bell, 2002). Participants then had the option of a second private 39 interview, or participation in a member-checking focus group. Only two participants were interested in the focus group option, so for this and other logistical reasons I decided that it would not be a feasible or effective option to pursue. Dates were scheduled for second interviews prior to adjourning our initial interviews. I transcribed each of the five interviews verbatim and conducted an analysis for use in the second interviews. The second interviews served the function of member checking, to ensure the accuracy and relevancy of my analysis and to fill any holes in the data. John Creswell (2006) defines member checking as a time for the researcher to solicit participants' views of the credibility of the findings and interpretations" (p. 252). I will further describe my narrative and thematic analysis methods in the next section, for my purposes here I will mention that participant-specific summaries were prepared for the second interviews. The protocol I followed for these interviews was: 1) participants were asked to review a narrative descriptive summary developed about them and provide corrections or additions to me verbally, and 2) participants were asked to review the themes and supporting quotes from their transcripts, and provide confirmation or further perspectives on the accuracy and relevancy of my analysis. Participants received DVD copies of the videotaped interviews during this interview and were encouraged to be in contact should they wish to provide additional information. The second interviews, being more casual and discursive than the first, were conducted at various locations with the participants, including: a mall food court; a Community Living association office; in participants' homes, and in one case, over the phone. Only relevant portions of the second interviews, which contained new facts or perspectives, were audio taped and transcribed for analysis. These interviews lasted an 40 average of 45 minutes. One participant chose to end the second interview after receiving the narrative summary and DVD, and called on staff support to help articulate the fact that, after the first interview, they had decided to begin work on a life history of the participant. The participant felt that continuing in the study while writing the life history would be "too much". The participant then indicated to me in writing her consent for me to use the data collected up to the point of her withdrawal. Upon completion of the rest of the interviews, transcriptions were developed from the relevant material and added to the others to yield a complete data set. Participants All five participants were in attendance at the demolition on October 18, 2011, and all of them lived in Woodlands between 1952 and 1977, for a combined total of 62 years. Given the years they resided there, four of the five participants are ineligible for compensation in the class action suit, and the other is in the application process at the time of writing. The ages of the participants ranged between fifty and seventy-two, presenting an older cohort of former residents than those who lived at Woodlands in the late 70s, 80s and 90s. Four women and one man also skews the representation of gender in the study. Geographically, four of five respondents reside in the Lower Mainland and one in the North. It is interesting to note that younger former residents, male former residents, and those living in various regions in the province are underrepresented in the sample. However, I did not specify the need for a representative sample in the inclusion criteria and have no reason to believe that these omissions present problems with the validity of the data. 41 In terms of support needs, the participants in this study vary to some degree. Of the five individuals, two live in staffed residential facilities and receive daily support for living. One receives intermittent support in a semi-independent living facility, and two are completely independent in their day-to-day living. Three of the five receive social assistance, but all cited poverty as an ongoing issue in their lives. There is no statistically analyzed public record of the range and severity of disabilities of former residents at Woodlands. However, there may be a perception that the five participants in this study represent a minority of former residents and are therefore an exceptional cohort of "high functioning" adults. Interestingly, all of the participants described their ability to articulate their thoughts and reflect on their experiences as somehow linked to an obligation to speak up on behalf of others, rather than presenting an exception to the experiences of former residents as a whole. This point will be further elaborated in the findings of the study. A final and related similarity of the research participants is that they all identified as advocates seeking justice for the transgressions committed at Woodlands. All of the participants are well known in their communities as outspoken supporters of deinstitutionalization. The data generated through the interviews reflects this quality of the participants, as does the consistency of the participants' desires to have their identities revealed in this thesis. A narrative summary of each participant's self-description appears in the findings section of this document to contextualize and introduce the people involved in the study. 42 Data Analysis Procedures I reviewed the original interview transcripts, as well as the relevant portions of the member checking transcripts several times, looking for three different types of comments. First, I looked for instances where participants described their lives in order to build narrative summaries (Hole, 2007). Second, I looked for descriptions directly related to my research question about the significance of the Centre Block demolition. Third, I looked beyond the content of the transcripts for language use and ways of storytelling that provided insight into the nature of the descriptions being given (Atkinson & Walmsley, 2010, p. 279). These three distinct readings of the transcripts allowed me to weave the methodological traditions of narrative, content analysis, and discourse analysis together in assembling my findings. For each participant I created a narrative summary, seen below, which is a sequential representation of the life details shared in the individual interviews. Lieblich, Tuval-Mashiach & Zliber (1998) suggest that this approach to narrative "provides us with access to people's identity and personality" (p.7). By organizing the events, domains of life, and descriptive language emphasized by the participants, I was able to portray the personhood of the study participants to some degree, as well as offer richness and context to the study. Since "voice" is a major theme in both my research design and findings, it is only fitting to include this step in my analysis of the data. Atkinson and Walmsley (2010) describe how researchers who consolidate the voices of their research participants "enable…people with intellectual disabilities, and others, to contribute to the construction of history" (p. 273). Furthermore, the process of summarizing and "getting to know" these life histories assisted me to make more holistic analytical observations 43 between the testimonies of participants. Making comparisons between the transcripts required writing key words in the margins where significant, impassioned, or repeating ideas appeared in the texts (Auerbach & Silverstein, 2003). The key words changed and evolved as I proceeded, allowing me to group similar "codes" together using coloured paper clips. Once the repeating ideas were grouped into colour codes, I organized them into broader themes, cutting and pasting portions of the verbatim testimonies into categories in a separate document (Auerbach & Silverstein, 2003). While I initially endeavoured to focus only on those ideas and codes that related directly to my research question, I found that many strong themes emerging through the data had a more abstract, discursive and complex relationship to my research focus. Rather than leave these important insights out of the analysis, I shifted my intention to allow flexibility in my research concerns (Auerbach & Silverstein, 2003, p. 33-34). In the discussion section of this study, I attempt to unpack some of those complexities. Member checking and referring back to the People First committee reference group with preliminary themes provided further perspective and explanation on the themes I had organized. In the end, my analysis resulted in a deeper understanding of the unique and shared characteristics and perspectives of the study participants. Trustworthiness and Validity of the Research The methods described above have been approved by both the Behavioural Research Ethics Board at the UBC Office of Research Services, and the faculty committee overseeing the study at the School of Social Work. Beyond these procedural endorsements, my concern in demonstrating quality in the study includes addressing the 44 degree of legitimacy, accountability, internal validity, relevance and resonance, accuracy, and usefulness inherent in the work. Gathering data exclusively from the former residents of the institution acted as an accountability measure to ensure that their voices are privileged. By asking participants to describe the significance of the demolition event, I also gathered responses that signal the internal validity of the study itself. An excerpt from Pamela's interview serves as an example of this. In this brief exchange, Pamela was discussing the former residents' decision to get together and "see this building fall". Meaghan: There's something about the decision you made as a group, that helped. Pamela: Yeah. Meaghan: And what did it help? Pamela: It helped everyone understand about us and how we felt and how everything was. This selection demonstrates that, for Pamela, it is important that work be done to nurture a deeper understanding of the experiences of former residents, which this study attempts to do. Through the use of member checks, participants confirmed the accuracy and relevance of my analysis. Upon completion of member checks, all five participants signaled their trust in the analysis by forfeiting their right to anonymity in this document. Member checking allowed me to ensure that my analysis of the data resonated well with the felt needs of the participants, and yielded a greater capacity for self advocates to have their voice heard. 45 Sharon Rallis, Gretchen Rossman and Rebecca Gajda (2003) propose that the demonstration of trustworthiness in any study should focus on relational rather than procedural concerns. They suggest that, rather than a preoccupation with "jumping through IRB hoops", efficacy and legitimacy should be defined by the ability of the research to develop "sensitive and thoughtful relationships that build as part of research" (Rallis et al., 2003, p. 405). In my collaboration with research participants, I received confirmation of such a relational quality of trustworthiness. This required a high degree of transparency as a researcher, an exercise that was primarily ethical in nature. When member checking with Carol, she offered the following confirmation: I think you really got inside my head so we completely communicated that, and an understanding so that you understand. Cause you haven't been where I was and I haven't been where you were. So we can connect. And understand. There's a good understanding between us of where we want to go in addressing this. Carol sees her participation in the research as a collaboration and a way to advance her own capacity to address the issue of deinstitutionalization. The People First reference group also attested to the relevance of the study for its members, people who are institutional survivors and advocates for deinstitutionalization. Their requests for knowledge translation activities such as a plain language report, and their communication with their members about the study through newsletter and word-of-mouth updates, also speaks to the trust of this group in the process and results of the study. The usefulness of the study to the community of people being studied increases its validity. 46 Findings and Interpretations Prior to discussing the interpretations of the data across and among participants, here I include the narrative summaries of each individual. These provide a textural dimension to the themes and significances in the testimonies, and introduce the human people who were involved in the study. Barb Westfield Barb Westfield was born on Vancouver Island in 1940 and spent part of her infancy in hospital before returning home to live with her family. Barb has kept several family photo albums and memorabilia from the early years of her life with her parents and siblings. However, at the age of ten Barb was admitted to Woodlands by no choice of her own or her family. At the time, virtually no support systems existed to care for children with difficulties in the community, and Woodlands presented the only option for meeting her learning and medical needs. According to Barb, these needs were barely met if at all - she described the institutions as a "hellhole" and asserted that she never wanted to be there. Despite this, Barb grew close with many of the fellow residents and describes them as part of her family. She described the abuse and neglect inflicted on her friends, but maintains she was lucky to not have been abused herself. In her words: "I was lucky. My mom and dad was there [for me]; all my family was there, so nobody could…nobody could figure it out…so that's how it goes". In her time at Woodlands, Barb describes how she helped the other children, especially those who were nonverbal, by learning their wants and needs and advocating with staff on their behalf. She prides herself on her ongoing ability to advocate and help those who were abused in Woodlands, through organized advocacy groups such as the We Survived Woodlands 47 collective. Barb currently lives with a roommate in an assisted living apartment in Vancouver where she feels her choices are respected and honoured. She enjoys a busy lifestyle with friends, community living associations, and advocacy groups. Richard McDonald Richard McDonald was born in Vancouver in 1943 and attended a "normal" school until the age of nine. Much like Barb, Richard was sent to Woodlands as a result of a conviction that his family "would not be able to look after me at the time". Richard believes that his family didn't know the truth about what was happening at Woodlands while he lived there, and that the harsh punishment of residents ensured their silence. Richard described the abandonment and alienation that residents experienced as a result of their admission to Woodlands. An eternal optimist and a joker, Richard enjoys recounting stories of mischief that he and his friends got into while living at Woodlands. In 1962, he was transferred to the Tranquille institution in Kamloops, where he lived until 1970. Then, Richard was relocated to a smaller facility in Powell River and finally achieved independence in 1976 with the help of community living advocates. Richard remained in Powell River, building a home and a community there for 32 years, prior to returning to Vancouver in 2002. Currently, Richard is an outspoken advocate for former residents and against institutions. Having moved house many times over, Richard is happy to finally have a permanent place with everything he needs and a community of friends that help each other out. He keeps in touch with many fellow survivors of institutions. 48 Carol Dauphinais Carol Dauphinais was born on Vancouver Island in 1942 but unlike Barb and Richard, Carol's childhood prior to living at Woodlands was not a happy one. Rather, it was characterized by physical and sexual abuse, neglect, and deplorable treatment in the care of the Ministry. She was admitted by her social worker to Woodlands when she was 17 years old without an explanation for her placement given to her. Carol's comparatively brief time there was terrifying and confusing to her. She described the facility as dark and devoid of stimulation or affection. Upon escaping from Woodlands and her parents grip for good, Carol built herself an adult life filled with work, learning, and a successful marriage of 29 years. In 2001, Carol published a memoir of her life called Living with Labels and Lies, a testimonial that earned her the distinguished Courage to Come Back award from the Coast Foundation Society. Her widely read work tells the story of how she "turned my child's hell around". Carol remains devoted to the prevention of child abuse in all its forms, and regularly uses opportunities to educate others about the realities of institutions and government care. Pamela Kerswell Pamela Kerswell was born in 1950 and has spent her life residing in the Lower Mainland of British Columbia. As a child, she was surrounded by family and friends who tried to ensure her special needs were met. Pamela describes various conditions such as Polio, brain damage, and Prader Willi syndrome as factors in these needs. She remembered having been placed in various school and residential programs before being admitted to Woodlands as a young girl. 49 At Woodlands, Pamela testified that she was both abused and witnessed the abuse of others, including infants. She described instances of humiliation and being forbidden from seeing her family. She recalled the circumstances and degree of abuse in the different wards, and recalled liking those wards that permitted weekend family visits. Although Pamela moved out of Woodlands in 1973 as a result of the advocacy of her family, she maintains friendships with a group of former residents as part of her social network. Currently living in a group home in Burnaby, Pamela is very involved in her community and sees herself as a founding contributor to the grassroots Community Living and self advocacy movements in her region. Pamela is a staunch self advocate with a commitment to social justice and community development. Shelly E. Starr Shelly Elizabeth Starr was born in Vancouver in 1962 and spent her childhood and youth entirely in and out of government care. Shelly is aboriginal from the Lax Kw'alaams reserve North of Prince Rupert, but she spent her formative years placed in a foster home in the Lower Mainland. At the age of ten and for reasons unknown to her, Shelly was admitted to the Woodlands school in New Westminster. She remained there until she was 21 years old. She described these years as horrible, having been nothing more than a number to the government, and having suffered abuse that she is currently litigating. Upon her release from the institution in 1983, Shelly received support to establish herself in the community, find housing, and learn life skills such as cooking and using public transit. As an independent adult, Shelly came to understand her back-story and learn about her aboriginal roots. This prompted a move in her early thirties back to her 50 hometown of Prince Rupert. Now, Shelly is a productive worker at a fish plant and a drugstore there. She regularly visits her birth mother in a senior's facility where she lives, and is also in contact with other family members in her community. However, her time at Woodlands continues to haunt her as she is a long-time litigant in the class action lawsuit. Shelly's involvement with the We Survived Woodlands group, and her concern for rights attainment for former residents makes her a well-known advocate and an active supporter of deinstitutionalization. Having accompanied research participants on a journey through their memories of the Centre Block demolition, two things have become clear to me. First, the past is extremely active in the lives and memories of these former residents. While we sometimes conceive that institutional abuse is a thing of the past, the emerging memories of specific instances of abuse committed at Woodlands is still in an active process among these individuals. The second point of clarity resides in the obvious agency that these former residents felt in their participation - both in the demolition event and in the research process as well. This work, described by participants as bona fide labour, involved memory work, conceptualized by the giving of testimony; advocacy work, to obtain justice and compensation for victims of institutional abuse; and the use of voice, to reclaim the autonomy and citizenship lost in the institution. These two insights shared by participants - the immediacy of the past and the direct involvement or "labour" involved in current activities - are primary characteristics of the data running through all of my findings. The broader results of my analysis, and 51 the structure of the following section, are that of a set of interweaving temporalities. That is, the testimonials given generously by research participants transition back and forth through memories of the past, current motivations, and future prerogatives. Participants generated testimony about the significance of the demolition that I have organized in three overarching themes: their needs to process the past; their intentions to transmit their living legacies; and their stewardship and protection of the future.2 These three temporal orbs will be the basis for organizing my findings. Throughout each of these motivations, the active impact of institutional life and the direct involvement of former residents permeated the testimonies. The resulting essence of these testimonies points to a collective experience that is consistent with Riaño-Alcalá 's (2002) "community of memory in place" theory. Of course, an approach to analyzing the data based on a theory of collective memory does not preclude the uniqueness and exceptions inherent in each participant's testimony; these will be pointed out along the way as I discuss the three themes. By extension, my upcoming discussion and conclusions of the data do not suggest that the truths of these five particular individuals can be applied to all former residents of Woodlands. Rather, they are a set of impressions gathered from a context-specific process of inquiry. As such, they can give us hints and glimpses into this phenomenon, and guide us in our future thinking about inclusive deinstitutionalization efforts. 2 My use of tenses when interpreting the transcripts and referring to study participants follows the same rationale throughout this text: descriptions of past events and direct quotes from the transcripts are referred to in the past tense, while dispositional, convictional and aspirational elements about participants are referred to in the present. 52 Processing the Past In a symbolic sense, the presence of the Woodlands Centre Block had the effect of evoking negative memories for former residents who lived there. Therefore, the effect of its demolition had some perceived immediate and personal benefits for them, which the research participants described. First, the demolition had a nullifying effect on bad memories. Second, it allowed for some degree of an ending to occur in their minds with relation to the events that happened inside. Lastly, it offered some chance for residents to move on in their post-institutional lives. "Lots of things went on in there" (Shelly).3 For the research participants in this study, part of the significance of the Centre Block demolition is its direct relation to the past. All of the participants directly related the physical presence, as well as the demolition of the Centre Block building to their memories of abuse and neglect at Woodlands. Through soliciting descriptions of the edifice, participant accounts of mistreatment, abuse and neglect were abundant throughout the interviews. These descriptions provide a context with which to understand the Centre Block as a symbol of these negative experiences. An example of these descriptions is given below: 3 When providing direct evidence or examples from the transcripts, I include the names of the participants in most cases. Two exceptions to this occur in my findings; these are cases where the evidence provided are of a particularly sensitive nature and I have not received explicit consent from the individuals to share their names along with this information. 53 So what it was, that just looking at it [the Centre Block], some of them said to me, "we had our teeth pulled out there" because we had a dentist there and they pulled the teeth out because staff were scared that, so people would bite the staff and everything else. (Richard). Participant recollections of the Centre Block demolition were indelibly linked with these types of memories. I have noted above various functions that the Centre Block served; according to the participants, and for the sake of this review, they were: central administration office, visiting hub, living quarters for staff, superintendents and patients, dispensary, dentist office, laundry room, classroom, and dining room. Some of the contextual descriptions given about the Centre Block are quite graphic, as in the following description of the cafeteria: "…everybody had to sit on these hard benches. And if you didn't sit up right or stuff like that then somebody would come along and shake a stick, and whack you on the back to make you sit up straight" (Richard). The impact of these testimonials weighed heavily on me in the first weeks of my interview process. In fact, after the initial three interview sessions, I took a break to process what I had heard, and only returned after seeking assistance for what I can reasonably label vicarious trauma. It came as a surprise to hear the breadth and variety of types of abuse and neglect, and after a while I decided to compare the list from McCallum's (2001) report to a list I compiled based on the participant testimonies. Astonishingly, the lists were identical. These included: non-medical dental extractions, solitary confinement, punitive use of straightjackets, slapping, pulling hair, striking with a stick, immersion in scalding and icecold water, chronic illness and infection, verbal humiliation and taunting, punitive 54 deprivation of food, punitive deprivation of sleeping mattresses, and punitive depravation of family visits. In hearing from only five former residents, a full range of abusive circumstances had emerged. Each of the harms defined by the former residents I interviewed were not necessarily enacted directly upon each of them, but the occurrences had direct impacts on them as witnesses and bystanders in addition to direct recipients of the abuse. This is not to suggest that the data points to any quantitative scope of the violence that occurred at Woodlands; it is to say that all of the study participants had intimate memories of abuse at Woodlands. The men and women participating in the study conveyed the impact of these events on their long-term wellbeing, and seemed sometimes to blur the boundaries between the harms that they themselves sustained, and those of their friends and ward-mates. "It's horrifying to look at" (Shelly). The prominence of the building and its centrality in the former grounds of the institution made the sight of the Centre Block an icon for the study participants. The act of looking at the building, for some, was a disturbing experience in itself. Richard explained this: "it was visible from the Skytrain and everything else. And every time the self advocates would look at it, they would shudder." Shelly explained, "it was just standing there. And, I mean, who wants to see that? I don't. You know, I don't think the survivors do." Interestingly, both of these accounts describe the reactions of both the individuals interviewed as well as those of other former residents, evidence of the collective nature of these memories. 55 Participants described how, for them, the building actually contained memories, and that watching them fall to the ground provided a symbolic burial or erasure of those memories from their consciousness. The descriptions suggest that prior to the demolition, former residents looking at the building began to relive the instances of abuse. Richard described the significance of the demolition directly: "we can actually see abuse being happening at the sight at the time…we want to erase those thoughts and get on with our lives the way it is now." He referred to the memories being "etched in our eyes" upon the sight of the building. The virtual erasure of the building paralleled the resulting erasure of negative thoughts and feelings associated with living there, at least in a temporary way. Allusions to burial were present in the testimonies, including Carol's relief that the demolition "put the horror into the ground where it belonged". Referring to the tunnels under the ground of the building where former residents allege that abuse took place, Pamela said, "They still have it underground, but you can't go through them. It's all caved in and it's all gone. Completely demolished". These comments suggest that erasure, both of the building and of the immediate torment of bad memories, was partially accomplished through the demolition. "There's an end to this creep" (Carol). Although the participants in this study have not lived in Woodlands for decades, their descriptions of the building erasure contained sentiments of finality. In a very real sense, it seems as though the threat of internment was always present as long as the building was standing - even though it was derelict and condemned. Two of the former residents I interviewed referred to the demolition as the "closing down" of the institution a parting of residents from the facility. In a seemingly conflated temporal sense, Barb 56 explained of the demolition that "everybody was so happy to see shut down… because they were abused. They were happy to get out of there." Carol concurred that the demolition "finalized - it put an ending because I could see it's gone, for real." For Pamela, recalling memories of demolition day evoked a story of how she left Woodlands. In her memory of leaving, she recalls: [My mom] came and got me out of there… I just bawled my whole head off…The nurses said when they came to me, "you're not taking her". And my mom said, "oh yes she is coming with me - I'm taking her… She had enough". And they did. I had enough in there. So I went with them and stayed with mom in the house. This finality, or for Richard the "closing of a chapter of the book," meant an assurance, a permanence of Woodlands' closure that may not have been there before. Upon the demolition, former residents were free to live without the building, and this carried much significance for the interviewees. The extent to which this relief and assurance enabled some healing or closure for former residents is unclear. None of the research participants used the language of healing or closure, although they did describe their feelings watching the demolition in part as happy, excited, bright, and positive. As Shelly explained the demolition, "it's a relief, but it's going to take more". She was quick to point out that, in the context of the ongoing settlement with the court, "we have a tough challenge ahead of us still, before it is - if it ever does come to a conclusion." Interestingly, three of the participants also referenced sadness as an emotion present at the demolition. This tension will be discussed later. 57 Carol described that, by virtue of the building being gone, she can now better cope with and tolerate her memories. In her words, "Your memories don't really go away, because there is always something that will remind you. But you can cope with that and tolerate that - well, that building's gone". The effect, for her, is a brighter outlook on a dark experience. The significance of this shift was echoed by Barb as she spoke on her own behalf and those of others - "how bad it was for people to live there, it means so much to have it gone. They were happy to see it go down". Richard used the language of peace and freedom to describe the direct effect of the tearing down of the Centre Block. As he said, "we just want some freedom from it so we could not live in the past anymore". "They will say yes, it did happen" (Richard). One thing that was unanimous about the benefit of the demolition in processing the past was the opportunity to have recognition and acknowledgement of the transgressions that occurred at Woodlands. Most of the research participants had positive comments about media outlets telling their stories. When asked why he wanted to do so many interviews, Richard replied in part, "so they will say yes, that did happen and we applaud it". Shelly, for her part, described a moment during the day when she spoke with some students in attendance. Shelly: When I was there on the site, after the services were over, I had many students come to me who I didn't know. And they thanked me… So it was really nice… Meaghan: And what did they thank you for? What were they saying thanks for? 58 Shelly: Uh, the courage for coming down and recognizing. Very nice students of other schools shaking my hand. Although some participants spoke about the negative effect that the ongoing denial of abuse has on them, a contrast to this was the acknowledgement of abuse suffered which was present at the demolition. This quality of recognition and acknowledgement is closely related to the notion of remembering former residents, which will be explored below. I include it here to show one of the ways in which the participants in this study described processing the past through the demolition. "It's not easy, Meaghan" (Barb). Finally, despite the symbolic erasure, perceived ending, and increased coping that came with the destruction of the building and public acknowledgement of the wrongs committed on the site, two former residents indicated the difficulty they had in their participation. The work required to process the past through both the witnessing of the demolition and the participation in this research, was clearly difficult for these research participants. On several occasions in the interviews, responses suggested a palpable struggle with accessing the past and processing their memories of the demolition day. An example below offers an illustration: Meaghan: When you think about the building getting torn down, why do you think that's important? B: Well…it's not easy, but other people have been beat up. Because if you didn't get beaten up, you got shoved in cold water. So that's not - [pause] there's not much more I can say about it. 59 Pamela had a similar moment of retreat during a point in her interview that presumably evoked a difficult memory. Contrary to her self-description as someone who has "all the answers" about Woodlands, in the moment she was describing details of the various wards and suddenly stopped and said "that's all I know about Woodlands so far". These indications of the difficulty of participation cannot go unnoticed. Rather, they could serve to indicate where former residents continue to confront their past. The data explored here suggests that the demolition event partially assisted these former residents to address the impact of their experiences. While this was certainly an act of labour, and not always an easy one, the next section implies that the act was not a selfish one. Rather, the former residents in this study expressed a motivation to share and create a legacy from their past experiences and their involvement with the Centre Block demolition. As Carol concluded when I asked about this sacrifice, "It will be a labour of love". Transmitting the Living Legacy Throughout the interviews with former residents, the motivation to transmit a legacy became very clear in their descriptions of the demolition event. The participants described these efforts as a real significance in their elucidations of the event. A clear conviction to convey or communicate something through the performance of the event emerged in the testimonials. This pedagogical approach to the performance is passed on through the impressions of the interviewees and sends a clear message about the needs of former residents. These impressions are described below. 60 "It's part of my job" (Barb). In their descriptions, participants took on the labour of transmission at different stages in the process of getting the building demolished. The work took place through the advance preparations, the physical demolition and the public ceremony surrounding the Centre Block. These media served the purpose of conducting memory work, asserting a collective voice, and advocating for justice and compensation for the former residents in a public sphere. Richard's contribution was to ensure that the building be demolished. He described that "every time the self advocates would look at it [the Centre Block]…they said 'haven't they took that down yet?' And I said, 'it's going to come down, and I'm going to make sure it does'… And it did happen." Similarly, Shelly explained that in the early phases of the land use study, a group of advocates were fighting to see the building demolished: "We had to fight to get it torn down. It was a battle. 'Cause at first we were loosing for a while and then the final round, we won the case to have it demolished by the city." Then, when the decision was finally made, Pamela recalled how the former residents advocated for a demolition date that suited them: Meaghan: When you think back to that day of the demolition, that was October 18th. Pamela: Yep, and then we had to change it. Meaghan: Why's that? Pamela: Because they weren't ready yet. Meaghan: Who wasn't ready? 61 Pamela: They weren't. We went to the office, and we went to City Hall, and the City Hall they weren't ready yet, so they changed it. The direct involvement of the former residents that I interviewed was a major characteristic of their descriptions of the demolition. In the passages above, two insights are apparent: there was a collective will to see the building demolished; and, the movement to make it happen is attributable to the former residents themselves. Descriptions of the media interactions on the day also illustrate the work that the former residents in this study engaged in, as an act of transmission. Among many descriptions, Richard, in particular, shared his thoughts about the value of his knowledge, shared through his media interviews. He recalled: It was incredible that I've gone and done this because now, even with this video that I'm doing now, will top everything off with my thoughts. Then what I'm going to do is, uh, I'm going to continue with this as much as I can. When Richard referred to continuing, he was addressing his own work in telling his story and getting involved with public awareness and advocacy activities through his community and through People First. Richard seemed determined to actively transmit his collective experiences and memories in order to influence people, communities and government. His testimony included evidence of his work at all three levels. This work is described throughout these observations. "I would like things to occur to you…" (Carol). The sharing and communication that was done by some of the former residents during the demolition served the purpose of teaching others. It was important to these individuals that members of the public gain awareness and knowledge of the 62 participants' experiences. In her interactions with a group of students, Shelly pointed out that: They're learning from us, right? The students are still - didn't know what it was, right?...They felt bad that was there, that institution was put there. Why it was there. They're starting to realize…They're learning in schools today. There's a lot of talk about it. M: And so what do you think they're going to do with what they learn? What do you think they're going to do with that learning that they do? S: Possibly educate other…do workshops, maybe. Possibly. And learn from what we went through. And it will be a…something they can study. Help others. Congruently, Pamela shared the importance of awareness raising: "We got to make it understandable to other people who don't know about it, who are learning. Just so people can see that." When asked what she would like people to know about the demolition, she asserted that she wants "people to know it happened to them or if they ever had a daughter that went in there, or what they think about it. And think about us, and things like that." Carol, describing her motives for transmission through the demolition, said, "When you're talking to me, I would like things to occur to you that maybe didn't". She envisions her job to help people understand what happened and why. Barb, too, described the labour of speaking out about Woodlands as having a demonstrative effect: "I opened my mouth. I spoke up. Woodlands did not think I should speak, but I showed them what I could do." The legacy of confinement in Woodlands is not always 63 understood from the perspective of those confined, but the demolition provided a venue for former residents to actively teach others about their experiences. "Some people don't understand" (Carol). Another part of the work done by former residents to transmit the impact of their experiences has to do with resisting a counter-effort that denies the verity of such experiences. Previously, I discussed the former residents' validation at having the abuse and neglect of their institutional past acknowledged and recognized. This relates to alternate explanations of resistance they perceived in their descriptions of the Centre Block demolition. In particular, participants addressed the resistance of the general public, some of the parents of former residents and former staff of Woodlands, and the government dealing with the class action suit. The witnessing and participation in the Centre Block demolition, and by abstraction the participation in this very study, allowed former residents to counter this resistance with their truths. For its part, the provincial government has defended the former institution in the courts, having been sued for the abuses that occurred under its authority. This results in the sense of an official denial of the abuse that occurred. Shelly explained, "the government denied for many years there was no abuse. Now, they're starting to realize yes, it was abuse." Later, when asked who was watching the demolition, she replied that "Christy Clark got my message cause I spoke - I mean, Christy Clark needs to recognize; the Premier of British Columbia needs to make it fair for all former residents so they get compensation". In this explanation, the demolition provided a platform with which to advocate for a fair settlement for former residents of Woodlands. In doing so participants were also actively positioning themselves as political subjects and citizens. 64 Study participants described the "parents" who didn't understand the importance of deinstitutionalization, and the staff who denied the abuse along with the government in denying their compensation claims. Through the event of the demolition, a hope in shifting these beliefs was expressed. One participant admitted to having contact with a former nurse at Woodlands who now works in an agency in their community, and who denied any abuse happened. "So that's a haunt right there…that bothers me", they said. Referring to some of the heritage stakeholders in the municipal decision making process of the demolition, Shelly offered an opinion of their resistance. "They think the other way. They don't think with us. And that's what we don't want. We want everybody on the same topic as us, right?" The "same topic" here obviously refers to the acknowledgement of abuse and the appropriate framing of the issue. Likewise, interviewees referred to parents who also think "the other way". As one participant said, "some of the parents thought a little different about it, but the survivors wanted it torn down". Another expressed the importance of the demolition to former residents: "I think they [former residents] were happy it's gone too. Ya. Because if it didn't…there is some parents that don't understand." This implies either that the parents may have an interest in seeing institutions reopen, or that they were interested in preserving the Centre Block. For one interviewee, the former was the case: "I hope a lot of people will learn from our experience that we went through in the past and so in this way the parents will not ever decide to open institutions again". It is unclear through these examples who the "parents" are - whether they denote specific individuals, a group of decision-makers, or an abstract parental figure resisting the voices of former residents. In any case, this sense of active resistance conceptualized by the 65 interviewees may well serve to propel the motivation for transmission, to pass on a version of the truth according to the testimonies of former residents. When Carol referred to the brightness that the demolition lent to her dark past, she also conceded that those who don't believe her bother her less after the event. "So now", she explained, "people that choose not to believe me, that's their choice, not mine. They're in denial. It's easy enough". Carol went on to implore those deniers to "walk in my shoes" in order to understand the impact her experiences had on her. The notion of walking in another's' shoes emerged with a particular refrain from former residents: that decision-makers responsible for institutionalization be "put in there" themselves. Three of the study participants referenced this idea as a way to teach those in perceived denial of the realities of institutions. Shelly wondered how government personnel would react "if we put them there and they'll see how we felt, right?" Richard concurred: "they should be in there looking out at us so we can go in and say it's about time we did something right". This imaginary act of resistance against power and authority, once repeated and circulated, becomes an act of transmission. When pressed about her motives for this, Carol described her teaching philosophy and ultimate benevolence: I would just want you to experience what I experienced. And my heart wouldn't allow that to go on too long. But do you understand what I -that would be my technique in teaching. If I can't get to you one way, I'm going to try and influence you another way. This countering of denial, apathy or ambivalence about former resident experiences is an active part of the transmission work being done by former residents of institutions. 66 The opportunity for the Woodlands Centre Block demolition to stand for something has been richly described by study participants. Closely related to this is the motivation to preserve history and heritage through transmission and on the subject of the Centre Block demolition. "We want to keep this part of the history available" (Richard). Related to changing attitudes and teaching others about the past is the notion that former residents in the study had about contributing to an official history and a cultural legacy. A motivation for this work is to teach others about the history and circumstances of the Woodlands institution. Richard, who took on the role of spokesperson at the demolition event, attested that he was happy to give interviews with reporters. He explained, "I'm going to continue with this as much as I can…because I want to keep this part of the history available so if anybody wants to know, they can have a history of what happened on that day". Richard sees this work as pedagogical, wanting members of the public and government sectors to learn, through the demolition, the ills of institutions. He referred to the public record, wanting the event to be well documented for posterity. For Shelly, the demolition of the Centre Block building was a history lesson in itself, and one that carried motivation for future transmission activities. She reminded us that "we need to keep the pressure on" for the following reason: To have them torn down and maybe restored as a park, maybe. Or some kind of a monument to remember people. Remember those people who never made it out and died on the site, or…'cause on the Woodlands site there's over three thousand deceased. 67 Other participants spoke to the "heritage" that is represented on the Woodlands site - a heritage, as Pamela described, that belongs to the former residents. Carol's commemorative motivation is almost completely subsumed in abuse prevention efforts. Barb made a point to speak on behalf of others who can't or who were never encouraged at their time in Woodlands. The simplest way of marking history and heritage, and the most common refrain among research participants, is to ensure that former residents are remembered and honoured in a changing landscape. Pamela summed it up perfectly, when asked what she wanted people to remember about the demolition: "Well, I want [the public] to remember us, and what we thought, and what everyone else thought, and what their experience." These concepts of history, heritage and living legacy lend themselves to a third theme in the research data - that of stewardship. "I enjoy helping others" (Barb). A final characteristic of the transmission work done by former residents is that it is often done on behalf of the entire group of all former residents of Woodlands. Although many residents of Woodlands could not communicate using language, the research participants conceived of themselves as having a responsibility to speak on behalf of their fellow residents. Their descriptions included ample evidence that their testimony included the sentiments and experiences of others like them, much of the time using collective language and instances of acting on behalf of others. In Woodlands, Barb's friend Pat relied on her to understand and transmit her wishes on her behalf. Carol felt sure that "the ones [at the demolition] were as happy as I was. I believe that. And those that couldn't communicate were probably just as happy, that finally there's 68 somebody out there besides the greedy developers." While the "somebody" Carol referred to is unclear, there is an implicit sense that interdependence - that those who could not communicate or advocate for themselves could rely on those that could. As Richard said, "they were happy to have somebody do that type of work, just to get it down so the self advocates can have some freedom". In this case, the "somebody" Richard refers to is himself. For each of the participants interviewed, it was very clear their expressions were coming from a collective voice, and their work involved understanding needs and wants beyond only themselves. Barb explained, "I really enjoy myself understand everybody else. Not easy - I didn't like to see everybody else hurt". She repeated contrasting feelings of sadness while in Woodlands and happiness at the demolition. Uniquely, in her descriptions, these feelings were those of other residents as well as herself. Barb directly stated several times in her interviews that she is helping others. She explained that she is part of an action group seeking justice for residents who were abused, although she herself has not made any abuse allegations. While she stated several times that "it's not easy", her sentiments for advocating, celebrating, and remembering the transgressions that occurred at Woodlands were not motivated solely by individual needs but rather, "part of the job" of having lived there with others. The labour that these research participants undertook by having been involved in the demolition was motivated by the need to teach, be heard, and work on behalf of others. Richard works part-time at the Burnaby Now newspaper and described his pride after having been featured in an interview in the local paper: 69 I got them there at the time of the demolition, to take pictures and everything in the paper, which everybody saw, and everybody was saying, "I saw you in the newspaper" in October of last year. And I said, "thank you very much" and they all said that I did a fantastic job. Stewarding the Future In describing the Woodlands Centre Block demolition, the former residents I interviewed impressed upon me their strong role values as stewards of the Woodlands legacy. This stewarding role involves a moral responsibility to carefully plan for the future with respect to the needs of all former residents of Woodlands. The descriptions of these roles were rooted in a sense of place (i.e. the former site of Woodlands), an ethic of abuse prevention, and the values of safety, community and inclusion. The study participants expressed a commitment to the preservation of history, as described above, but also the guarantee of institutional closure. They see themselves as co-creators of a new community, after the demolition of the building. "The site is going to be way better" (Richard). There are many ideas circulating among three of the study participants, about the land use at the site, now that the Centre Block is gone. These three interviewees shared their unique visions for how they would like the site used. These visions include notions of commemoration, beautification and the creation of community space. Shelly explained that, even though Onni owns the land previously occupied by Woodlands, there is an ongoing process for former residents' involvement in developing the site. This process is partly as a result of the "long battle" to have the building demolished in the first place. Her narration of this battle was characterized by former 70 residents' negotiations. The passage below uses her words to describe the options that were presented to her and others. We didn't want to see [the Centre Block] restored as a monument to say, oh they were there…They were going to restore it and have old pictures there of people living there. We said no to that. And they approached the former residents and offered us if we wanted to live onsite in the new high-rise condos. We didn't want to live on the site where there's abuse and people died there. And we said no to that, too. Shelly is clear on her ideas and her role in the decision-making about the Woodlands site. Interestingly, her description of the Inside/Out art exhibit with which she was involved, suggests that it served a commemorative function similar to the museum that was being proposed. "[The Inside/Out] was open to the public so the public can see what it was like being in there and different pictures and different wards, the siderooms…" Her vision for commemoration at the site involves the erection of a memorial pole, set in the granite of the old building, with the date of the demolition engraved into it. Pamela imagines that there is a safe home for people with her condition, PraderWilli syndrome - built on the site of the former Woodlands institution. When asked what kind of home it would be, Pamela assured me that "Ya, it's okay. The staff are good there. They won't harm them. It's all with parents [involvement]. Yep." Upon the Centre Block site itself, Pamela sees a garden with flowers that will "be our heritage". She referred to the memorial garden that has been created on the northern tip of the site, suggesting that the need to commemorate former residents has been met by the 71 cemetery. A final vision would be to donate a new building on the site to People First. A staunch supporter of the Society, a description of her proposed building is below. Next, we're thinking of making from that building [the Centre Block], we're thinking of making a hall for People's First…For a party. Ya...where they took Woodlands down. We asked for another building to put up so that we can use the hall for People's First parties. When asked about the site now, Richard simply said that "The site is better than it was because [the Centre Block is] not there, we don't have to look at it, and it's going to be way better." He went on to share information about his involvement with the City Task Force in developing the memorial plaques to tell the story of the building. Richard also shared ideas about his vision for having park benches put on the site and dedicated to the former residents. A final wish Richard has for the site is that the wrought iron gates along Columbia street be removed, as he explained that they serve as a reminder of the confinement that former residents experienced at Woodlands. These ideas for how to create memorials, community spaces, and safe housing on the site of the Woodlands institution connotes a connection with the place and a hopeful vision for the future of that place. "There will be no more institutions built in BC ever again" (Richard). The "Never Again" refrain was echoed by all of the five research participants in this study. As Barb said, "It meant a hell of a lot to see it go bye-bye, straight to hell. It's gone now and no one can ever live there again." The former residents expressed several times their passionate urge not to repeat the past and the need to complete the process of total deinstitutionalization. 72 The public witnessing of the demolition served the function of affirming an end of institutions. This is evident in the way Richard described his desired public reaction to the event: "…so they will say that this way there will be no more institutions built in BC ever again." The demonstration of destroying what was, allows for a new commitment not to repeat it. As Carol implored, "Learn from what you did with us who were Woodlands patients, so you don't repeat it. And I mean it, that you don't repeat it." The assurance that Woodlands could never be opened again, provided through the witnessing of the Centre Block demolition, served the purpose of abuse prevention for some of the former residents. When asked where her feelings of happiness towards the demolition came from, Pamela said, "well, then they would stop abusing everybody because they knew they were getting into trouble." Carol expressed her motivation for this preventative work: "what you learn from me is prevention for the next child that's abused." Although former residents feel that the demolition provided a guarantee against future transgressions of the same kind, Shelly was quick to point out the need to continue with prevention work. The key, she shared, is "not to open the institutions. 'Cause some of them are shut down but they could be open that quick with government". What's more, Shelly made the important point that many institutions like Woodlands are still opened in other provinces. She described how she is working with others to "help them get out of the institution and then to a safe environment where there's no abuse. Get them away from that." Her caution and reminder is evidence of her role as a steward of the future of our care approaches towards people with intellectual disabilities. 73 "Now we can do things that we want to do" (Richard). Participants described their respective visions of communities and systems that do not segregate but include all people. These ideas were presented as an alternative to the lives they lived in Woodlands, and were anticipated as a result of the Centre Block demolition. The study participants envision a social climate repatriated by all institutional survivors, and a future generation embracing of all abilities. Richard decried the value of living and working in the community with a story about the funeral of a friend of his. Upon the occasion of his friend's funeral, Richard described how the fast food restaurant where he worked shut down for the day so that all the staff could attend. This, evidently for Richard, was a symbolic act much like the demolition, where values are transmitted through personal and public acts. In this case, a vision for the future includes community acceptance and participation. Richard went on to describe his vision: "now the people in society can mix with [former residents] and become friends, and they can do what they want with the rest of their lives". He noted that the demolition event was a chance to connect with former residents and associate with them freely - something they were only forced to do inside Woodlands. This concept of free association had ties to the "never again" guarantee that was partly provided by the building demolition. Pamela's interview provides an illustration of the activities and programs that she has enjoyed since her departure from Woodlands. Her vision about a People First hall on the former Woodlands site would be a resource for other people with disabilities. She described that people "with palsy, in wheelchairs" could come there to get help, try out new programs like computer training, learn new skills and "see what they're like". Her 74 perception about community life includes assisting others, and providing opportunities for inclusion and meaningful activity. From Shelly's narrative, we see an aspect of the freedom and autonomy in life outside the institution that enables former residents to explore their own cultural identity, and to exercise the freedom of movement. Shelly, having researched her family history, became repatriated into her community as a native woman, and moved from Vancouver to Prince Rupert to pursue her identity. "Let them look at life differently" (Carol). The ethic of prevention communicated by study participants extends to a vision for the next generation of children who are labeled with intellectual disabilities. As children and young adults, many former residents of Woodlands did not have the opportunity to attend school. Although the institution was called "Woodlands School" between 1950 and 1974, the quality of education for those deemed "teachable" at the time was of poor quality at best (Ford, 2011). Barb's vision for the future included a society where "kids get to go to school instead of being stuck in an institution". Carol, having expressed many ideas about reform in the child welfare system, sees protection as a necessary condition for any child, and one that was not afforded to kids in Woodlands. She explained, "Nobody was protecting these [children] - like, we're undeserving of protection? We're undeserving or unworthy of kindness? You know, we all need protection in my mind." Beyond this basic protection ethic, Carol pointed to a deeper sense of acceptance which implies an end to the discrimination bestowed upon people with labels. She described the significance of the guarantee: "I hope they don't build any more [institutions], so that the next generation becomes an adult and gets the 75 benefit of the doubt of what they're saying". Carol's vision for the future includes a sense of dignity and legitimacy for the lives of people with intellectual disabilities. Study participants expressed their own agency and their role in ensuring an inclusive society. Closely connected with the labour of remembering institutional life and fighting to have the building demolished, the study participants also see this stewarding of the future as part of their duty. In conclusion, the study participants have taken an active effort to process the past, transmit the living legacy and steward the future, and that these motivations were animated as a result of my inquiry about the Centre Block demolition. The themes, organized temporally, are overlapping and interrelated, and suggest an alternative to an image of former residents as passive victims of their experiences. 76 Discussion and Implications Relationships Between the Themes Although the themes were organized using the past, present and future tenses, these ideas were overwhelmingly more fluid in people's testimonies than they were sequential. Neither were the acts of processing, transmitting and stewarding - all forms of a labour described by participants - limited to any one of the temporal orbs used to structure the results. In the narratives of individuals, the time signatures of their experiences shifted and swung back and forth. At times, participants spoke about the past as if it was the present; at times, the future vision would be described as current reality; and, in a unique way the future and past worked together to inform the storytelling of the research participants. This conflation of seemingly separate temporal concepts suggests an active negotiation of former residents' experiences, needs, and hopes. We actively learn from the past to actively improve the future. A fascinating tension in these accounts lies in the relationship between remembering and forgetting - commemoration and erasure. While the former residents formed a rallying cry around the need to document the past in order not to repeat it, they also talked about the importance of leaving the past behind. Rather than this being evidence of ambivalence in their positions, it seems that remembering and forgetting can coexist in an almost dialectical way - remembering informs forgetting (what to leave behind), and forgetting informs memory (what to bring along to the future). Indeed, the maxim "never again" contains concepts of vigilance and also of denial. More importantly, the former residents in this study seem to be angling towards a process of selection and negotiation in what gets packed in the suitcase of history - they are in an active 77 negotiating and curating their own histories. For example, when asked what they wanted people to forget and remember about the demolition, Pamela, Richard, and Shelly both articulated that they would like to erase the memories of forced congregation and rather remember and honour the lives of those who lived at Woodlands. This observation bears resemblance to some of the literature previously reviewed around testimony and memory. Researchers pointed out that personal testimonies can have a transformative impact on individuals' healing and identity-building (Malacrida, 2006; Roman et al., 2009). Riaño-Alcalá (2002) credits collective memory work as bringing about the active construction of a new knowledge, which Jelin (2003) says has the effect of transforming victims from passive victims to active participants. Malacrida (2006) posited that the work of memory builds a sense of collective identity and belonging, and that the act of testifying has the effect of rewriting our social understandings of historical phenomena (p. 201). Atkinson and Walmsley (2010) concur that the knowledge of individual's experiences "can contribute to a better understanding of history" (p. 274). Indeed, it seems that in negotiating and curating their own history, the study participants were tapping into a collective knowledge which has emancipatory potential.This finding suggests that more significance exists in the act of testifying about the demolition, than the significance of the demolition itself among the study participants. While it is clear in the interviews that the motives for former residents witnessing and participation in the Centre Block demolition are beyond selfish, there does seem to be a relationship between the work of preventing institutional abuse, teaching the lessons of the past, and a greater sense of self esteem or wellbeing of the former residents I 78 interviewed. These men and women take pride in their contributions to the deinstitutionalization movement, and by doing so, help themselves. A guarantee of the provision of a brighter future seems to assist to some degree in individual coping and processing of atrocious individual experiences. Likewise, I would speculate that the amity described by former residents with each other, and the building of a social agenda to address the Woodlands transgressions enables some to better cope with and process their experiences. The descriptions of the demolition event illustrate an assembly of like-minded former residents whose consensus in the witnessing signaled collective vision of a collective act. While there is a danger in congregating the needs and responses of all former residents into a singular narrative, the responses from research participants do provide evidence of a collective will for some, and the alleviation of isolation - one of the most cruel and ironic circumstances of institutionalization. Relationship with Existing Literature Returning to the related literature reviewed in Chapter 3, we see some congruent elements in the testimony of former residents. The research participants described the lack of choice and control they experienced at having been dumped in the institution, and the misuse of power of the provincial government, administrators and staff at Woodlands. This corroborates the critical reading of institutional legacies where power relations are the focal point. In offering alternative perspectives and first-hand accounts, research participants provided a counter-narrative; rich fodder for the production of emerging curatorial practices or "museums of conscience" (Lehrer & Milton, 2011). These testimonies and others like them generate an impetus for the creation of what 79 Lehrer and Milton (2011) call the "democratization of authority" in historical and heritage practices. This evidence for a new way of commemorating past transgressions correlates with one of the many needs of institutional survivors cited by the Law Commission and others. Recalling the commonalities in these texts, it appears that the descriptions of significance of the Centre Block demolition touched on at least three of the articulated needs by these authors. First, the demolition and the public event hosted on the site served an acknowledgement and recognition function, of the wrongs that were committed upon former residents of Woodlands. Second, active involvement and participation in the decision-making, event proceedings and demolition were present in the testimonies. Third, the demolishing of the Centre block provided prevention, commemoration and education for the ongoing movement to deinstitutionalize people with intellectual disabilities. The descriptions of these considerations, having been to some extent addressed through the demolition, should indicate the congruence with the reports on institutional abuse. Evidence that these needs are in fact authentic has been provided by the participants in this study. The symbolic status of the Centre Block building runs parallel in both the research interviews and the semiotic analysis provided by Wolfensberger (1975) and Park and Radford (1997). The participants detailed the link between their memories and the physical presence of the building. This is reminiscent of Wolfensberger's (1975) assertion that the space of an institution is used to remind people of their subordinance, and of Park's and Radford's (2011) discussion of the symbolic meaning of the institutional building as exclusion and dehumanization. We heard in the testimonies of 80 former residents, the resonating refrain of cruelty, abuse and isolation from their homes and families, upon visual contact with the building. Methodological Reflections By developing a firm methodological foundation based on emancipatory (e.g., Oliver, 1992; Goodley, 1996; Atkinson, 1989; Chappell, 2000; Walmsley & Johnson, 2003), critical (e.g., Malacrida, 2005; Wolfensberger, 1975; Foucault, 1980; Park & Radford, 1997) and memory theories (e.g., Riaño-Alcalá, 2002; White, 2000; Jelin, 2003), I was able to generate a particular reading on the testimonies of the research participants. A number of characteristics in the narrative choices of participants may have posed problems in a more traditional study. For example, one of the participants imagined their vision for a future community to be in place now, and they gave descriptions of the Centre Block demolition that did not match with my own recollections. My conscious choice not to challenge the accuracy of any factual information, but rather to receive the testimonies as impacts and impressions, allowed me to escape from the judgments I may otherwise have placed. My lack of triangulation, or fact checking, also afforded me the ability to generate and analyze the stories and convictions of the participants in due dignity and integrity. My narrow focus on descriptions of significance of the Centre Block was obviously challenged by the research participants. They contextualized the topic and my interview questions in a broader scope, drawing on many other events and occurrences throughout their sessions with me. An ensuing insight is that memories, snapshots and impressions of a singular event are highly discursive with past experiences and future motivations. The Centre Block as a focal point or a symbol in the memory landscapes of 81 participants points to representations of a lived past, and has symbolic value for the future as well (Park & Radford, 1997, Wolfensberger, 1975). Johnson (1998), in her ethnography of the women in the institution ward, understood that the women's experiences provided a focus for her study, helping to shape the agenda of her research and future research initiatives (see the section on implications for further research, later in this chapter). Despite my initial focus on generating content that spoke directly to my research question, the process of the research had the direct effect of expanding, deepening and enriching my own notions of diverse and inclusive society (Danforth, 2006, p. 341). I do not see this dilation in the scope of responses as undermining the design of my study; rather, the study has been more richly informed by the participants' wisdom and wealth of knowledge. I must conclude this unanticipated shift is an ultimate success in the quest to give voice to former residents of Woodlands. The resulting discourse contains insights, warnings, and free expressions that truly follow the philosophy of emancipatory disability research (e.g., Malacrida, 2006; Oliver, 1992; Atkinson, 2010; Walmsley & Johnson, 2003). Here I see a slight distinction from inclusive research. While the involvement and referencing back to the People First Group and the research participants was a major preoccupation in my process, the orientation of collaboration, trust and reciprocity became much more important in the design process. Rallis et al.'s (2003) concept of relational trustworthiness is a useful tool in deciphering a sea of ethical and logistical considerations. It must be noted that the issue of subjectivity in the research has remained a tenuous concern in the justification of this research. I remain committed to the principles of knowledge translation and will continue to take opportunities to produce plain 82 language materials and other dissemination techniques. However, extrapolating messages from the research participants might best be accomplished by supporting initiatives by and for former residents to meet their needs. By opposing concerns about the legitimacy of first person testimonials, the goals of emancipatory research can be broadened and re-envisioned for future work. While the collaborative orientation of this study provided some safeguards against objectifying participants (e.g., by establishing trusting relationships and reciprocity), the work is not truly collaborative unless the participants themselves are the primary decision makers in the research process (Walmsley & Johnson, 2003). Walmsley and Johnson (2003) suggest that academic researchers need to adopt a more consultative role in research initiatives about people with intellectual disabilities: initiatives that are driven by people with intellectual disabilities (p. 213). Limitations and Cautions Prior to offering further thoughts about the implications of this study, there are some important limitations and cautions to explore. Throughout the transcripts, references were made to those former residents who do not self advocate, use language, or have access to testimonial pursuits. The strength and articulation of the voices heard in the study are not typical of former residents of Woodlands, and many voices were no doubt excluded in my small sample of five. These exclusions should not be overlooked. With greater means, future initiatives could attempt a more inclusive sample and involve those whose voices are the most marginalized - those without language, without legal status, without the freedom to share their perspectives. 83 Notwithstanding this consideration, interviewees did state their convictions in representing other former residents in their collective accounts and experiences. A caution resides in the risk that the results of this study would negate the need for further and ongoing responses to the Woodlands atrocities. While the participants talked about endings and guarantees of institutional closures, it cannot be said that healing or closure resulted from the performance of the demolition. In fact, the data in the transcript contained many conflicting accounts of both "happy" and "sad" feelings during the demolition event. This tension between feeling glad that the building is finally gone, and sad because of the abuse and neglect endured by so many, is an ambivalence that governs the zeitgeist of post-institutional life for former residents. The studies of trauma and healing are vast areas of work, and these considerations are neither within the jurisdiction of this study or my area of interest. Therefore, no conclusive implications on the healing effect of trauma can or will be offered in this investigation. Above all, it cannot be said that the Centre Block demolition provided a final resting place for the struggle for reconciliation being sought by many former residents. Scholars (e.g., Henderson & Wakeman, 2009; Malacrida, 2006; Roman et al., 2009) comment on the role of catharsis in justice and healing processes, of which the demolition can be said to have achieved, but offer a warning against its comprehensiveness. Commenting on the Indian Residential School Truth and Reconciliation Commission, Jennifer Henderson & Pauline Wakeman (2009) assert that while catharsis may carry personal benefits for survivors, their testimony is not a substitute for justice being served (p. 14). 84 The five participants volunteered their stories and experiences, but no former resident should ever be obligated to do so for their own perceived healing or closure. The discrimination and oppression imposed on those who lived in any institution can be addressed in many ways according to the needs of survivors. Laurel Fletcher and Harvey Weinstein (2002) point out, "while catharsis may have short-term benefit for some, healing is a long-term process that involves significantly more than emotional abreaction" (p. 593). The demolition certainly did not provide a final resting place for the struggle for reconciliation being sought by many former residents. Implications for Policy and Practice Evidence of a collective experience of life inside the institution draws attention to the way we understand and respond to the needs of institutional survivors. The participants in this study testified to events and perspectives beyond their own direct experience. We must come to understand the impacts of a shared past on former residents, and take this understanding into account when designing legal or other redress processes. In the case of the class action currently in settlement, injury by proximity should be a viable form of abuse. We see an acknowledgement of this in the Common Experience Payment program in the redress of residential schools; class actions involving large institutions for people with intellectual disabilities would do well to consider the collective impact of abuse and neglect. The results of this study validate the range of needs of former residents beyond a compensation scheme. Individuals who lived at Woodlands are still in an active process of disclosing and processing the harms they sustained while in residence there. Taking the needs of acknowledgement and recognition; participation and involvement; and 85 prevention, commemoration and education into account as articulated by the research participants, it is clear that there is much more work to be done. Given the age range of the respondents in this study, there arises an urgency to act on these needs. Government, social workers, community developers, and Community Living advocates in partnership with each other can do this work. Stories of institutional life are abundant but not often called on in our quest to understand social justice. While respecting the dignity and choice of former residents, social workers can work with communities to continue learning and addressing our legacy of institutions. The articulation of individual or collective accounts of institutionalization serves many of the articulated needs, and these can be expressed personally (through counseling or other therapeutic interventions) or publicly (through political action). Research participants in this study pointed out the need for vigilance, "to keep the pressure on" in order that institutional models are not recreated for people with intellectual disabilities, and in order that those large institutions still in operation in Canada be closed and the model abandoned. For other large facilities where people are congregated, lessons about systemic abuse, protection, and isolation can inform practices and internal policy-making processes. The rise of elderly citizens moving into extended care facilities is an example of the places that demand our collective vigilance in not recreating atrocities such as those that occurred at Woodlands. The design, delivery, and monitoring of community-based disability support services can heed the call for involvement and participation so clearly made by self advocates and former residents. Residential programs such as group homes or the 86 more popular home share option must be informed by the lessons learned by institutional abuse. These programs must be designed with flexibility, responsiveness and customization to every individual's need. Where choice and control are not present in the everyday residential lives of people with intellectual disabilities, risks emerge that threaten the very human rights our system strives to promote. In many ways the stories of the former Woodlands residents who participated in this study were, by their testimonies, promoting that very seminal concept of choice and freedom. The narrative qualities of the research participants in this study obliged me, personally, to apply rigour in my understanding of the testimonies. Rather than seeking objective and factual information from the men and women in these interviews, I adopted an overriding concern with the expressions of impact that were being offered to me. Surely the practices within a counselling paradigm acknowledge this difference, but too often in Community Living services I have encountered attitudes that people with disabilities are untruthful, hyperbolic or erroneous in their communication efforts. The literature of memory studies (e.g., Jelin, 2003; Riaño-Alcalá, 2002; White, 2000), as well as the profound testaments shared by the research participants, offers us an alternative approach to communication and understanding. Community Living agencies and practitioners in the fields would do well to shift their thinking away from a linear model of interaction with persons served. Implications for Further Research The results of this study indicate three areas of further research. The need for more inclusive or emancipatory research with and for people with intellectual disabilities has been a rallying cry for a group of scholars (e.g., Atkinson & Walmsley, 2010; 87 Walmsley & Johnson, 2003; Chappell, 2000, but not specifically with regards to institutions. The realities of institutional treatment approaches worldwide suggest that, while closed in BC, this option remains a common one elsewhere. The voices of former residents in advocating for their closures could be deeply enriched by this type of research. Closely related to this is the suggestion that research be conducted to explore and conceptualize the ongoing needs of former residents of Canada's large institutions. The reports in relation to Woodlands, and the studies conducted by the Law Commission (Institute for Human Resource Development, 1998; Law Commission of Canada, 2000) provide an indication of a range of psychosocial needs, but a more customized and narrow focus on people with intellectual disabilities could have very practical applications for social workers, advocates and decision-makers. A full theoretical understanding of trauma and healing with respect to people with intellectual disabilities could inform this type of investigation. These are areas of research I have yet to encounter. Finally, a tradition of inclusive life histories has emerged as part of the emancipatory disability methodology, and could respond to a substantial need I encountered in this study. Carol, in our research interview, described the benefit of having written a book to document her experiences: When I wrote my book, that was the best therapy I ever could have had because this shame and this guilt and this fear don't belong to me, and I just went shoop! shoop! shoop! Go back to your owners. Researchers could assist individuals like Carol to document their life histories, and by 88 doing so leave a legacy for our continued learning from a first-person perspective. Concluding Remarks Many of the observations made through Barb, Richard, Carol, Pamela and Shelly's accounts of the significance of the Woodlands Centre Block demolition may well speak to themes outside of their own, singular experiences. The accounts themselves work to memorialize, teach, envision, imagine, and reckon with the past, present and future. They do so for the sake of social wellbeing, for themselves, other residents, communities, and society in general. They draw on the vastness and the richness of human experience, even in the confinement inside the walls of a hellhole. This wealth of wisdom and knowledge flies in the face of a medical understanding of disability and a scientific understanding of intelligence quotients. It refutes the need to balance fact with fiction, and understands the narratives offered as valuable knowledge. The significance of these descriptions can be tied together through White's (2000) description of circulating stories, and Riaño-Alcalá 's (2002) notion of a "community of memory in place". The messages are many, and call on us to listen and generate social agendas with, by and for former residents and self advocates in all stages of deinstitutionalization in Canada. 89 References Adolph, V. (1996). In the context of its time: A history of Woodlands. Victoria, BC: Government of British Columbia, Ministry of Social Services. Ahlgrim-Delzell, L. & Dudley, J. R. (2001). 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Issues of access, gate-keeping and "informed consent." In M. Mauthner, M. Birch, J. Jessop, & T. Miller (Eds.). Ethics in Qualitative Research (pp. 53-69). London: Sage. Oliver, M. (1992) Changing the social relations of research production? Handicap & Society, 7(2), 101-113. O'Sullivan, T., Hartley, J., Saunders, D., Montgomery, M., & Fiske, J. (Eds). (1994). Key concepts in communication and cultural studies (2nd ed.). New York, NY: Routeledge. Park, D.C., & Radford, J.P. (1997). Space, place and the asylum: An introduction. Health and Place, 3(2), 71-72. Pascoe, V. (1982). Breaking Through. [Motion picture]. Toronto: National Institute on Mental Retardation. Retrieved from www.communitylivingsociety.ca. 94 Patraka, V. (2001). Spectacular suffering: Performing presence, absence, and witness at U.S. holocaust museums. In D. Eber & A.G. Neal (Eds.), Memory and representation: Constructed truths and competing realities (pp. 139-166). Bowling Green, OH: Bowling Green State University Popular Press. Public Guardian and Trustee of British Columbia (2004). The Woodlands Project. Report: Vancouver, Author. Retreived from http://www.trustee.bc.ca/news_information/woodlands/. Rallis, S.F., Rossman, G.B., & Gajda, R. (2003). Trustworthiness in evaluation practice: An emphasis on the relational. Evaluation and Program Planning, 30(4), 404-409. Reaume, G. (2000). Remembrance of patients past: Patient life at the Toronto hospital for the insane, 1870-1940. Toronto: Oxford University Press. Riaño-Alcalá , P. (2002). Remembering place: Memory and violence in Medellin, Colombia. Journal of Latin American Anthropology, 7(1), 276-309. Richard v. British Columbia, BCSC 773 (2010). Retrieved from http://www.courts.gov.bc.ca/jdb-txt/SC/10/07/2010BCSC0773.htm. Richards, R. (2008). Writing the othered self: Autoethnography and the problem of objectification in writing about illness and disability. Qualitative Health Research, 18(2), 1717-1728. Roman, L., Brown, S., Noble, S., Wainer, R., & Earl Young, A. (2009). No time for nostalgia!: Asylum-making, medicalized colonialism in British Columbia (1859-97) and artistic praxis for social transformation. International Journal of Qualitative Studies in Education, 22(1), 17-63. 95 Sample, P.L. (1996). Beginnings: Participatory action research and adults with developmental disabilities. Disability & Society, 11 (3), 317-332. Sandelowski, M. (1995). Focus on qualitative methods: Sample size in qualitative research. Research in Nursing and Health, 18 (2), 179-183. Stone, E., & Priestley, M. (1996). Parasites, pawns and partners: Disability research and the role of non-disabled researchers. The British Journal of Sociology, 47 (4), 699 - 716. The Province. (2008, July 9). Historic New West asylum destroyed. Retreived from http://www.canada.com/theprovince. Times Colonist. (2006, August 9). Woodlands survivor calls cheque an insult. Retrieved from http://www.canada.com/victoriatimescolonist/news/story.html?id=728eec29e79b-4d13-ab2d-8fea32424f0f&k=26974. Walmsley, J., & Johnson, K. (2003). Inclusive research with people with learning disabilities: Past, present and future. New York, NY: Jessica Kingsley Publishers. White, L. (2000). Telling More: Lies, Secrets and History. History and Theory, 39(4), 11-22. Wolfensberger, W. (1975). The origin and nature of our institutional models. Syracuse: Human Policy Press. Woodlands Parent Action Group. (2003). Having a choice interim report: A response to the "Need to Know" report. Vancouver, BC: Author. 96 Appendix A: Sample Letter of Recruitment November 18, 2011 Dear (name); I am sending this letter to find out if you are interested in participating in some research being done at the University of British Columbia. The topic of the research is: What the Woodlands centre block demolition means to former residents. The BC People First Society board of directors is involved with a researcher who is studying the meaning of the Woodlands centre block demolition. The study is for a masters thesis (a research project) in social work. The project involves interviewing former residents of Woodlands about the meaning of the Centre Block demolition. The centre block demolition was an event that many people paid attention to. Former residents of Woodlands have a valuable viewpoint to share about what the demolition means for the future and the past. You have been contacted because you are a former resident of Woodlands and might have something to say about the demolition on October 18th. If you choose to participate in the research, there will be two interviews for you to attend. The total time for the interviews will be three and a half (3 ½) hours between January and June 2011. The interviews will ask you about your thoughts and memories of the centre block demolition. They will be videotaped. There is some risk in participating, because the interviews might bring back bad memories about Woodlands. You do not have to participate or continue if you feel uncomfortable. Your personal information (name, address, etc) will be kept confidential, but the final report will be a public document. If you are interested in being part of this, you can respond by doing the following: 97 Fill out the statement of interest below and return it in the envelope to Meaghan Feduck, the co-investigator of the research. OR You can contact Meaghan at 604-723-8251 or email@example.com OR Call or email Tim Stainton, Director of the UBC School of Social Work and the the principal investigator (person in charge) of the research at 604-822-9674. Sincerely, Lorie Sherritt President, BC People First Society 98 Appendix B: Letter of Consent for Participants THE UNIVERSITY OF BRITISH COLUMBIA School of Social Work 2080 West Mall Vancouver, B.C. Canada V6T 1Z2 Tel: (604) 822-2255 Fax: (604) 8228656 www.socialwork.ubc.ca Consent Form Former Residents' Descriptions of the Significance of the Woodlands Centre Block Demolition Principal Investigator: (principal investigator is the person in charge of the project): Dr. Tim Stainton, Director, UBC School of Social Work 604-604-822-9674 Co-Investigator (co-investigator is the person doing the research interviews): Meaghan Feduck, MSW Student, UBC School of Social Work, 604-723-8251, firstname.lastname@example.com. 99 If you need help understanding what is written on this form, you can ask for help from the person who gave you this form, the people above, or another person that you trust. This research is part of a thesis project for a Masters degree. The thesis will be a public report. This form will let you know how your information will be used. You have a right to confidentiality when you share information in this interview. Purpose: Why is this study being done? The reason for this research is to know what the centre block demolition means to the former residents of Woodlands. You have been asked to participate because you are a former resident of Woodlands who has an interest in the demolition. Study Procedures: What is involved? If you will participate, you will first be introduced to the researcher in a short meeting (this could be by telephone). Then, you will be asked to do two interviews. The first interview will ask you what you think about the Woodlands centre block demolition. The second interview is to make sure you agree with what was written about your answers. In the second interview, you will have a choice of doing a private interview, or being part of a group talking together. The interviews will be done by Meaghan Feduck, the co-investigator. In total, you would be participating in the study for a maximum of three and a half (3 ½ ) hours. The interviews will be videotaped so that they can be written up later. Confidentiality Your personal information will be kept confidential in all of the records of the researcher. The write ups about your interview will not reveal your name. The videotape of your interview will not be shared with anybody but the person who interviewed you. All of the records from this study will be locked in a safe place or protected by passwords on a computer. You can have a copy of the video if you want. You can also have a copy of the write up of your interview. Your name will not appear in the final study and report unless you want it to. 100 If you choose to participate in a group interview, we will encourage participants not to share the information from the interview with anyone else. We can not control or make sure that the discussions will not be shared outside the group. What are the risks of participating? For some people, talking about Woodlands can bring up sad or painful feelings and memories. Some people find it helpful to talk about these things. The person interviewing you will let you know that it is okay to stop the interview at any time and not be part of the research. It is also possible to talk privately with someone else, including a therapist or a counsellor. A list of your options will be given you at your interview. Are there any benefits of (good things about) participating? Being part of this research study is a chance to have your voice heard about institutions, and to connect with other people who share your experiences. You will be provided with the results of the study in a plain language format. Renumeration/Compensation - Is there pay involved? If you participate in this research and you need to be paid back for transportation costs, you will be reimbursed up to a total of $10.00 per interview. For More Information You can contact the people named above if you have any questions about this study or your participation. If you are worried about your rights as a research participant contact the Research Subject Line in the UBC Office of Research Services at the University of British Columbia at 604-822-8598 or email firstname.lastname@example.com. 101 Consent Your participation in the study is voluntary. You can refuse to participate (say no) or withdrawal from the study (stop your participation) at any time no matter what. Your signature below says that you have received a copy of this consent form for your own records. Your signature says that you consent to participate in this study. Signature: Printed Name: Date: 102 Appendix C: Statement of Interest Form STATEMENT OF INTEREST IN RESEARCH Former Residents' Descriptions of the Significance of the Woodlands Centre Block Demolition Please note: Filling out this form is not the same as agreeing to be involved in the study. If you are interested, you can get more information by being in touch with BC People First or the University of British Columbia researchers. Any personal information you share will be used for the purpose of the research only. Name: ________________________________________________ Address:_______________________________________________ Phone Number:_________________________________________ Email:_________________________________________________ Yes, I might be interested in participating in the research described above Please contact me to talk about this research No, I am not interested in getting this information Please Contact me by: Phone Email Mail Other: ______________________________________ 103 Appendix D: Interview Protocol Former Residents' Description of the Significance of the Woodlands Centre Block Demolition Participant Interview Guide 1) Participant Information General Information • Name • Age • Address and contact information Self-Description • Tell me a little bit about yourself 2) General Description of October 18th What happened? • What took place? • Who was there? • Where? • When? 3) Memories from the Day What are your memories from October 18th? • Memories can be good or bad • What stuck out? • Are there other memories that come up? • Stories • Feelings • Memories Before and after the demolition 4) Importance of the Demolition What was important about the demolition? • What did it mean to you? • What do you think it meant to others? 5) Legacy of the Event What would you like people to know about the demolition? What would you like people to remember about the demolition? 6) Where do we go from here? Does the future look different now that the building is demolished? What happens next? 104
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It's about time : the significance of the centre block demolition for former residents of the Woodlands… Feduck, Meaghan 2012
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