Disability History In Canada: Present Work In The Field And Future Prospects
Geoffrey Reaume, Ph.D., York University
This paper surveys the existing state of Canadian disability history in terms of publicly available studies and resources. It will also consider the extent to which the field includes a critical disability studies perspective. Furthermore, future prospects for disability history in Canada will be addressed, including consideration of wider public engagement in preserving, interpreting and promoting our past. Crucial to understanding future prospects are the resources that are, or need to be, available to enable disability history to flourish in Canada inside and outside the academy. This essay will conclude with a discussion about historical preservation and where this field might be in 2021.
disability history; interpretations; accessibility; preservation; future prospects
Disability history in Canada, incorporating the perspectives of disabled people using a critical theoretical approach based on rights and inclusion, not charity and pity, is new in this country as elsewhere. This does not mean that this history has not been previously engaged by researchers before the early 21st century, even if the term “disability history” is not the category under which much of this work has been written. Social history, medical history, labour history and women’s studies are but a few of the areas under which this field of study has grown as a study encompassing the varied histories, policies and experiences of people with disabilities in Canada. Existing studies are so far focused on the period since the mid-19th century, with earlier periods being unexplored, indicating the vast terrain that remains to be researched. What has been explored thus far indicates both the pitfalls and promises of disabled people’s history. No matter where researchers turn, disability history is waiting to be uncovered and written about. As will be noted in this essay, this history crosses over into different categories and themes.
In order to maintain some cohesiveness, categories and themes will be used when discussing the state of the field, even if the borders are not always so easily defined between areas within disability history. This article will review historical accounts of disability, though memoirs and contemporary first person accounts will not be included, except in instances where first person accounts are placed in a historical context for the period under consideration. (A partial list of autobiographical sources compiled by three students is included at the end of this article). Recent decades have seen a significant increase in memoirs and first-person accounts by disabled people, a topic worthy of much more in-depth study than will be offered in this essay. These accounts provide invaluable contributions to understanding recent Canadian histories of disability. The focus here, however, is to provide a sense of what has been produced thus far when written within a historical perspective about one or more aspects of disability in Canada.
As will be evident, with some notable exceptions, the majority of the historical studies considered for this article were produced after 2000. It was around this time that critical disability studies scholarship began to be more widely known in historical studies and, therefore, started to have an influence on how this history is researched and written. (Longmore & Umansky 2001; Kudlick, 2003; Meade & Serlin, 2006; Anderson & Carden-Coyne, 2007) This does not mean, however, that all of the authors cited in this text identify as disability historians, which is not the case. Instead, sources have been selected based on their study of various aspects of Canadian history which seriously attempt to understand the lives and experiences of people categorized as disabled. It also needs to be said that the focus here is primarily, though not exclusively, on English Canada. As well, none of the studies mentioned consider the period before the mid-19th century. These omissions already point to where more research is needed. In order to provide some historiographical organization to this topic, studies are arranged according to disability and related themes. This also helps to provide an idea where more research needs to be done.
The essay starts with a discussion of sources pertaining to sensory disabilities so as to get an idea of existing work on the history of deaf and blind people in Canada. This is followed by a survey of studies on the history of people with physical disabilities in Canada, arguably the first area where a critical disability theoretical approach was deliberately employed in this country. Histories about people with intellectual disabilities and the related topic of eugenics are then discussed. This is followed by a section on immigration, race and disability, with a subsequent focus on mad people’s history, all of which are closely intertwined areas of historical research. A section on activist histories rounds out this historiographical survey by considering the influence of organized political engagement by people with disabilities and their allies.
An overarching question traversing through all of these categories is: to what extent and how has Canadian disability history been analyzed? This is intended to raise issues around both interpretations and preservation. How this history is interpreted depends partly on the recorder’s perspective, but so too does it depend on the primary sources available. This is particularly true for more distant periods for which first person accounts are rare, unlike for more recent times. Given the marginal status which people with disabilities have been located in Canada, as elsewhere, it is not surprising that some of this history is celebratory in order to provide some form of acknowledgement of the contributions of people who have been historically neglected, both in person and in print. Yet, as this article will indicate, celebratory history is incomplete at best, if not even unintentionally replicating the heroic aura critical disability studies researchers seek to avoid.
As Margaret MacMillan notes, “history helps to define and validate us”, though she also warns about the abuse of history “when people try to ignore or even suppress evidence that might challenge their preferred view of the past” (MacMillan, 2009, 57, 82).<![if !supportFootnotes]>[i]<![endif]> These points apply to historians of disability as well as to any other field of history. Just as ‘great disability heroes’ is a problematic approach, so too are accounts which might make disabled activists, for example, as devoid of flaws in advocacy work or which make all medical interventions as automatically oppressive. Disabled people can be as inspiring and as discriminatory, within one person or organization, as can anyone else.
In order to have a fuller sense of this history, including where disabled people lead lives that are as mundane and full of contradictions as that of most people who are not disabled, a wide variety of sources need to be preserved and a wide variety of histories need to be told. For that to happen we have to value all aspects of our past and to instil this value in others who keep these records so that future disability histories can be preserved, written and debated for generations to come. In doing so the historical memory of our collective past can, one would hope, make for a better future where disabled people are not marginalized and oppressed as has so often happened in Canadian history. This history can influence a collective sense of self-identity and political engagement. It can also influence public policies that have a direct impact on people with disabilities as policy-makers learn from the past while being influenced to improve practices in the present.
For this ‘historiographical happening’ to occur, work in Canadian disability history needs to be done just about everywhere from a critical disability studies perspective. This is both daunting and exciting given the wide open field for scholars interested in developing a new area of historical study. To get a sense of this field, the following pages provide a succinct survey of work done so far and where we might go from here. One caveat: while this survey aims to include a wide array of historical studies on disability in Canada, it does not claim to be comprehensive. Some sources included will puzzle some, whilst others left out will irritate others. The purpose is to provide a general idea of the field as organized herein while also acknowledging that a truly comprehensive bibliography awaits another day.
Research on the history of people with sensory disabilities in Canada includes studies on people who are deaf/Deaf and blind. It needs to be acknowledged that not all people who identify as hearing impaired consider themselves disabled; for the purposes of this paper they are included based on historical classifications of deaf being a disability. Probably the longest book to date (600 pages) produced in Canadian disability history is Clifton Carbin’s Deaf Heritage in Canada (Carbin, 1996), edited by Dorothy Smith. A comprehensive examination of deaf heritage across Canada during the 19th and 20th centuries, this study focuses on educational, employment, cultural and social activities among deaf people in a way that is intended to celebrate their history. While academic historians generally look down on such histories as being devoid of critical analysis, it would be unfair to dismiss this book solely on this basis, not least because of the wealth of resources, documentation and photographic records employed in telling this history.
Given that disability scholars advocate disabled people telling their own stories and reclaiming history, writing histories that validate the past can also be a way of community building, particularly amongst people who have historically been marginalized. The key is to be critical of our history as disability historians, avoiding the sort of ‘great man’ narratives that doctors, for example, have been criticized for. Instead, histories need to discuss our past that is both respectful of the disability community’s legacy but which does not paper over difficult issues about tensions, disputes and parts of our history of which we may not find ourselves so proud (for example, racism, sexism and homophobia within the disability community). If disability history is to be taken seriously, people classified as disabled need to be shown in historical work as having faults, virtues and mixed blessings like anyone else. Otherwise, it becomes hagiography – hero worship – which restricts learning to the very inspirational examples disability activists have sought to get away from in media portrayals. At the same time, as with any book exploring an under researched area, particularly one as wide-ranging as Carbin’s, it is clear that there is plenty of room for critical historical studies on deaf/Deaf history in Canada, from a macro and micro level. This book is therefore a start from which many other historical studies can proceed.
Two recently published works on the history of blindness also indicate the possibilities for further research in this area: Euclid Herie’s, Journey to Independence: Blindness – The Canadian Story (Herie, 2005) and Serge Marc Durflinger, Veterans with a Vision: Canada’s War Blinded in Peace and War (Durflinger, 2010). Herie’s book is a study of the Canadian National Institute for the Blind (CNIB) from its origins in educational programs in various parts of the country prior to its founding in 1918 until the early 21st century. Essentially a corporate history of the CNIB written by its former managing director, Journey to Independence is an insider’s analysis of the history of this organization which forms part of his own history. This is something which, on the one hand, disability history welcomes – enabling people with disabilities to write their own histories. On the other hand, Herie’s book takes a traditional whiggish, or liberal, historiographical approach which views the CNIB as a progressive force for inclusion for blind people without serious analysis or engagement within a critical disability studies perspective. His book does provide a good general overview of the important public educational roles the CNIB has played in Canada in providing accessible services for people who have benefited from their services. His study, however, takes a top-down approach with leading figures in the organization’s history predominating in the narrative, leaving a history from service recipients’ perspectives waiting for future studies.
Durflinger’s Veterans with a Vision is slightly more familiar with some of the disability studies historical scholarship, unlike Herie’s book which makes no mention of studies like Longmore and Umansky’s 2001 collection which is cited in this later book. Nevertheless, Durflinger continues with a generally heroic portrayal of veterans ‘overcoming’ their disability by working in the Sir Arthur Pearson Association of War Blinded, founded in 1922. The disability advocacy work the veterans did was immensely important, both for themselves and the wider Canadian public, particularly blind people who were not veterans, in conjunction with the efforts of the CNIB. The emphasis, however, in both of these studies is more on charitable self-help and the need to persevere in overcoming obstacles to disability rather than about the social rights of disabled citizens to an inclusive society.
Durflinger’s book includes first person accounts of blind veterans and thus makes more of an effort to include a social history of people with disabilities than does Herie’s work. Durflinger, however, maintains a traditional historiographical approach in which people with disabilities are deemed as heroic precisely for being disabled and trying to re-integrate into society, in this case after becoming disabled through military service. Disability is therefore portrayed as a tragedy rather than as a part of life deserving of citizenship rights and accommodation no matter how it is encountered.
In contrast, Joanna Pearce, in her MA thesis, “‘Fighting in the Dark’: Charles Frederick Fraser and the Halifax Asylum for the Blind, 1850-1915” (Pearce, 2011), utilizes critical disability studies historical analysis which eschews the charitable ‘overcoming’ narrative in favour of the gradual emphasis on the educational and employment rights of disabled people. In this instance, these rights were advocated by blind people led by Charles Fraser whose work in this area, she argues, has been neglected in historical accounts. Pearce’s work is unique among the above accounts for its critical disability historical scholarship and re-orientation of historical analysis to a rights based approach rather than earlier traditions which portray disabled people, and non-disabled allies, as forever brave as they engage in struggles for social inclusion.
Historical studies on people with physical disabilities comprise a significant and growing body of work in this country. Mary Tremblay’s extensive research and writing on people with spinal cord injuries arguably entitles her to be considered the first historical researcher in Canada to deliberately incorporate a critical disability studies approach. (Tremblay, 1993; 1995; 1996; 1998a; 1998b; 2000; 2005 co-authored with Campbell & Hudson) As part of her work, she engaged in extensive interviews with physically disabled people and their historical experiences of being paraplegic and quadriplegic from the 1930s to 1960s, at a time when no one else was undertaking this type of research in Canada. Tremblay did her work from within rehabilitation academic programs, including at McMaster University in Hamilton until her untimely death in 2009, It is noteworthy that the first scholar who consciously incorporated a critical disability historical perspective in Canada came from outside the historical profession.
Tremblay organized the memories of people with spinal cord injuries, and those who worked with them, into an overarching historical narrative to interpret their history of, first, survival through medical advancements and, second, working towards societal inclusion. Walking Fingers: The Story of Polio and Those Who Lived With It, edited by Sally Aitken, Helen D’Orazio and Stewart Valin (Aitken, et. al., 2004) provides a collection of first-person accounts by people who lived with polio from the 1920s to the end of the 20th century in their own words. The recollections are organized chronologically and, while devoid of an overarching historical analysis, this edited volume provides as good an example as any of the importance of recording and making available the perspectives of disabled people whose experiences form the core of why disability historical scholarship exists. While medical interpretations of disability abound in the book – not surprisingly given the personal histories being recounted – it would be inaccurate to categorize this collection as belonging to an ‘overcoming’ tradition, given the context of the period and the diversity of experiences.
Other studies on polio in Canada by Christopher Rutty (Rutty, 1995; 1996) have focused on the medical history of this topic from a policy and clinical point of view. Walking Fingers provides a personal perspective that social historians of disability (and medicine) will find invaluable, particularly as people from the earliest decades included in this book die and their memories become all that much rarer to locate. My book on the experiences of people with spinal cord injuries and polio at a rehabilitation centre in Toronto during the second half of the 20th century, as with the earlier work by Tremblay and the polio history edited collection, also incorporates first person accounts of disabled people, and those who worked with them, in its analysis of the barriers people with spinal cord injuries encountered. (Reaume, 2007) It therefore continues the work already established in this field and crosses into both medical and disability history.
Incorporating the work of recent critical disability history scholarship has been increasingly evident in a series of studies published since the early 2000s in Canada. This includes Nancy Forestell’s article on gold miners in northern Ontario who contracted silicosis. (Forestell, 2006) She examines how workplace conditions caused disability and impacted on miners’ notions of masculinity. In this study, the author reconsiders “the scene of my historiographical crime” (Forestell, p. 80) in order to revise her previous findings so as to include an analysis that incorporates disability studies scholarship. Forestell’s article offers a clear example of how the ‘new disability history’ is influencing re-interpretations of our past. As with Forestell’s study, labour conditions and disability provide the basis for Dustin Galer’s article (Galer, 2010) about the efforts of disabled workers in 19th and early 20th century Ontario to obtain financial support from fraternal insurance companies. He records how they encountered discriminatory attitudes towards their bodies and devalued potential as employees after their disabling injuries consigned them to the economic margins in an emerging industrial society.
Marginalization through urban transportation is the theme of Laurence Parent’s study (Parent, 2010) on the Montreal Metro subway system from its opening in 1966 through the next forty years. During this period increasing demands that the subway system provide access for people with disabilities is shown to be a decades’ long struggle for even basic access in a few locations. Parent’s study is also a history of the emerging disability rights movement in Quebec. She shows how historical tensions within the disability community allowed municipal and provincial officials to stymie calls for improved access to Montreal’s public transit system. Of all the areas of disability history considered for this article, physical disability in Canada has the most examples of the new critical disability history scholarship. This may be because people with physical disabilities are the group of people about whom most of the original historical scholarship in this field was focused.
The history of children with disabilities, crossing over all areas of this field, is an area which has also gained serious attention in recent Canadian scholarship, including studies on children with physical and intellectual disabilities. Veronica Strong-Boag’s overview (Strong-Boag, 2007) of the way in which disabled children and those responsible for their care have been perceived and received within social service agencies in Canada since the 19th century points to the continuing barriers and limitations that restrict their lives today. Jason Ellis, in looking at the development of special education classes in Toronto between 1910-1945 (Ellis, 2011), ensures that the voices of children categorized as disabled are engaged. He does this through a creative use of school records to understand the impact on them of social policies during a period when eugenics influenced what kind of education they did or did not receive. What life was like for disabled children in a Toronto institutional facility between 1960 to 1989 is the focus of Tracy Odell’s study (Odell, 2011) in which she interviewed former residents. As a one-time resident of the facility she investigates, Odell provides an instructive example of a person with a disability who uncovers historical experiences of other disabled people that comes out of her own personal history and a critical disability studies perspective. She documents how some disabled children could abuse as well as support other disabled people within an institutional environment.
Historical studies focusing on elderly disabled people in Canada is an area that has received little attention, though some institutional studies, such as those referred to in the section on mad people’s history, include accounts of older confined people. Two studies which focus on elderly Canadians, many of whom acquired disabilities as they aged, are particularly notable. In his book Edgar-Andre Montigny examined the way in which the government of Ontario sought to save money in the late 19th century by having older citizens cared for in the community by their families without any state supports, rather than in the increasing number of public institutions where many ended up confined (Montigny, 1997). Megan Davies’ book on residential life for older non-Aboriginal British Columbians between the 1890s to 1960s records how elderly people, particularly old, poor single men past employment prospects, were literally hidden away (Davies, 2003). While disability as an analytic category is not a focus of either book, both studies raise important issues dealing with institutional confinement, community care and state neglect of the elderly that has clear resonance in disability history, areas which are in need of further exploration.
Intellectual Disability And Eugenics
Critical historical academic accounts on the institutional experiences of, and policies about, people with intellectual disabilities were first seriously engaged in Canada by Harvey Simmons (Simmons, 1982), and co-authors John Radford and Deborah Carter Park (Radford & Park, 1993; 1995; 1999). Their work describes the repressive policies towards intellectually disabled people. Radford and Park, writing over a decade after Simmons, are more clearly influenced by the then emerging field of disability studies. Their work is among the first in Canada, along with that of Mary Tremblay who wrote on people with physical disabilities noted above, which incorporates a conscious critical disability studies historical analysis. Jessa Chupik and David Wright (Chupik & Wright, 2006) have also contributed to this history with their article “Treating the ‘idiot’ child in early 20th-century Ontario,” which focuses on efforts of families to obtain treatment for children in the community before resorting to institutional confinement.
Nic Clarke’s work on oppressive attitudes and practices towards children labeled as “mentally deficient” in British Columbia from 1870-1930 (Clarke, 2004-05) and his historiographical article on the importance of looking beyond asylums and into the community for historical experiences of people with intellectual disabilities in Canada (Clarke, 2006) significantly adds to this under-studied topic. His argument for why this historical work is needed reflects an approach which critical disability studies scholars in any field can identify with: “Most importantly, adding the voices of the intellectually disabled to the historical record not only influences their inclusion into contemporary Canadian society by affirming their existence in the past (and their direct involvement in the building of the country), but also promotes social justice…. Historical research into the lives and experiences of people with intellectual disabilities may well further the cause of advocacy movements for the disabled by providing a collective public memory of the injustices of the past, how they happened, and why they must never happen again” (Clarke, 2006, 484-485).
Claudia Malacrida’s article (Malacrida, 2006) and the collection edited by Karin Melberg Schwier, Hear My Voice, produced by the Alberta Association for Community Living (Schwier, 2006) provide first person accounts of the experiences of people with intellectual disabilities inside and outside places of confinement in Alberta, including among people who were eugenically sterilized. Both sources clearly reflect the importance of using oral history to ensure that previously silenced people are able to present their own perspectives, even when officials try to continue to enforce decades’ long silence, as Malacrida had to contend with. Her study, along with the edited collection by Schwier, underlines how disability oral history can serve to empower people whose views have so long been prevented from being heard by the wider public, until now. Suppressed history is being revealed to include previously excluded people, an exclusionary process that still persists today. In doing so, the past challenges the present.
Aside from studies on people with physical disabilities noted above, the eugenics campaign, particularly that which was directed against individuals labeled as having a ‘mental defect’, is the most extensively studied topic from a critical perspective in Canadian disability history. This is so even though these studies were not, for the most part, deliberately written with a critical disability studies analysis in mind. Angus McLaren’s contribution, Our Own Master Race (McLaren, 1990) examines eugenics in Canada from the late 19th to mid-20th centuries. McLaren’s critical analysis of the repressive nature of eugenics against targeted groups contributed to an emerging critical disability historical scholarship in Canada, even though it is unlikely that he was writing with this new field in mind. Later studies broadened the discussion beyond policy and the medical and political establishment, which McLaren focused on, to include details about some of the people who were victims of eugenics policies in Alberta. This includes the article by Deborah C. Park and John Radford (Park & Radford,1998) who used case file research to uncover the lives of people who were sterilized. The article by Jana Grekul, Harvey Krahn and Dave Odynak (Grekul, et. al., 2004) provides careful statistical analysis of the demographic background of people who were sterilized, or slated for sterilization but were not operated upon, based on heavily culled files from the province of Alberta. Jane Harris-Zsovan’s book (Harris-Zsovan, 2010), subtitled “Canada’s Nasty Little Secret”, in which the history and legacy of eugenics in Alberta is critically analyzed, is surprisingly devoid, however, of engaging the above cited studies, other than McLaren. Her account does not incorporate, nor show influence of, more recent disability studies historical research on this topic.
Immigration, Race And Disability
Related to the mistreatment of Canadians under eugenics programs were immigration policies influenced by prejudiced notions about who should be allowed into the country, or who should be deported. These practices were encumbered with discriminatory practices towards people based on disability, race, religion, ethnicity, class and gender. Two articles by Robert Menzies examine, in the first instance, the expulsion from British Columbia from the mid-19th to mid-20th centuries of immigrants categorized as ‘insane’ and ‘feebleminded’ (Menzies, 1998) while another article examines the appropriately titled 1935 “mass exile” of Canadians of Chinese descent (Menzies, 2002) from the same province after years of plotting on the part of government officials. Ena Chadha and Valentina Capurri have also made important contributions to this topic. Chadha examines the development of discriminatory practices in Canadian immigration law towards people regarded as ‘mentally defective’ from the mid-19th to early 20th centuries (Chadha, 2008). Capurri analyzes newspaper and public discussions throughout the 20th century about why it was argued that people should be excluded from Canada on the grounds of disability or disease (Capurri, 2010).
The above cited studies are tied into discussions about how race impacts Canadian disability history, an area which Robert Menzies has again contributed to with his co-authored article with Ted Palys (Menzies & Palys, 2006) on the confinement of Aboriginals in British Columbia’s psychiatric institutions from the late 19th to mid-20th century. In this article, they document the racist practices which devastated the lives of people who often found themselves hundreds of miles from community supports. The article by Leslie G. Roman, Sheena Brown, Steven Noble, Rafael Wainer and Alannah Earl Young (Roman, et. al., 2009), though disorganized, also contributes to the discussion about the discriminatory impact of psychiatric practices on Aboriginal people in British Columbia’s past. With the exception of Capurri and to a lesser extent Chadha, new critical disability historical scholarship cannot be said to have formed the theoretical basis of these studies. All, however, contribute in their own historiographical way to the emergence of this approach in Canada by critically analyzing what happened to people whose race, class, gender and disability identities were used to enforce discriminatory practices upon them by those in positions of power.
Mad People’s History
The close connections between the studies in the preceding section and mad people’s history indicates the cross-over between topics as scholars and activists seek to understand our past that was not so clearly segmented into different disability categories as this article’s organization might suggest. Whatever categorizations are constructed for the purposes of organizing one’s thoughts, it is obvious that this history is full of cross-disability connections. To be labeled with one disability did not prevent someone from experiencing life within another disability category, or to be mistreated under similar discriminatory practices affecting how individuals were characterized as immigrants, Aboriginals, racialized and ethnic minorities, females, and working class. This is most evident with eugenics where people labeled ‘mentally defective’ covered a wide variation in human expressions and appearances that were deemed unacceptable to the medical and political establishment who propagated such ideas. It is also evident in studies about mad people.
Studies on and about mad people in Canadian history from a critical perspective include Cheryl Krasnick Warsh’s study on the Homeood Retreat in Guelph, Ontario (Warsh, 1989); James Moran’s analysis of public policies in Ontario and Quebec during the 19th century (Moran, 2000), which includes a discussion about community care by families who sought to forestall institutionalization; my book on patient life and work at the Toronto Hospital for the Insane (Reaume, 2000); Erika Dyck’s study on the use of LSD in psychiatric practice from the perspectives of both doctors and patients (Dyck, 2009); and Janet Miron’s analysis of the wider public’s practice of visiting institutionally confined populations, including insane asylum inmates which, she argues, was more benevolent than voyeuristic (Miron, 2011). The above studies were more influenced by the tradition of social history and public policy analyses in the historiography of medicine rather than critical disability history. All, however, make contributions within Canadian disability history by examining aspects of the past that affect our understanding of the experiences and treatment of people deemed psychiatrically disabled or mad.
The most critical study of mad people in recent Canadian history comes from outside academia: Irit Shimrat’s Call Me Crazy: Stories from the Mad Movement (Shimrat, 1997). Her book is an oral history and personal account of activism and psychiatric treatment in parts of Canada (mainly Ontario, Quebec and British Columbia) from the 1970s to 1990s. Again, while Shimrat does not identify or incorporate a conscious critical disability studies perspective any more than the aforementioned studies on the history of psychiatry in Canada, her book indicates how it is possible to include an insider’s account of a particular group of people without sacrificing critical analysis of which there is plenty in regard to the activist history she recounts. It is not a ‘heroic’ overcoming approach but more of a self-reflexive analysis in which problems within the mad movement are discussed as much as is criticism of psychiatry. In this sense, her study fits right into critical disability studies given Shimrat’s appreciation of her own position in relation to her subject and involvement with the people she is writing about, a central tenet of critical disability studies research.
Shimrat’s book leads into activist histories and its connections to public policies affecting disabled people. As with some of the above cited sources, such as Shimrat and Parent, disability history cannot be so easily divided between clear cut categories since people classified as disabled were and are activists and advocates in their own and other people’s lives, past and present. Mel Starkman’s account of the early mental patients liberation movement (Starkman, 1981), of which he was an active member, is the first study of its kind in the Canadian disability rights movement. Even if many people described in his article may not have identified as disabled, they nevertheless had links with, and support of, similar goals with the wider disability community: autonomy, advocacy, employment, housing and citizenship rights. Bruce Kappel’s study, “A History of People First in Canada”, in Gunnar Dybwad and Hank Bersani’s edited collection (Kappel, 1996), New Voices: Self- advocacy by People with Disabilities, written by a “friend of the self-advocacy movement” (p. 93) includes first person accounts by activists who helped found the first organization run for and by people with intellectual disabilities. Both Starkman and Kappel’s articles come out of the movement which led to critical disability studies research and writing and thus can be appreciated for being ahead of academia in terms of critical disability historical studies in Canada.
In their edited collection Making Equality: History of Advocacy and Persons with Disabilities in Canada, Deborah Stienstra and Aileen Wight-Felske gathered a wide-ranging collection of articles covering activism among disability organizations, including the various groups of people identified in this review article (Stienstra & Wight-Felske, 2003). Perhaps the most representative example from this book, given its broad focus covering the entire range of disability activists who worked together on a rights campaign, is the article by Yvonne Peters (Peters, 2003) on the 1980-81 fight to ensure that Canadians with disabilities were included in the new Constitution. She argues that this was a turning point in this country’s disability history as disabled people demonstrated their collective political influence on the national stage for the first time. Peters recalls the cross-disability solidarity that was necessary to force a reluctant government to move on this issue only after national mobilization by disabled people and their allies. She also hints at tensions and prejudices within the activist community, as some activists with physical disabilities thought of leaving out people with mental disabilities from their demands for constitutional protections to make their own inclusion easier. Fortunately, this did not happen. Instead, people whose disabilities ranged across the entire spectrum worked together to ensure a historic human rights legal victory. A study like this, while rightfully celebrating a major advocacy triumph, also helps to show that this political work took place amidst serious differences within the disability activist community about how to proceed and who to include. Peters thus offers an interpretation which is critically engaged, including about internal activist history.
David Lepofsky, one of the architects of the Ontarians with Disabilities Act, provides an account of the efforts to get this provincial legislation passed in an article about a history that he, along with fellow activists, was crucial in shaping (Lepofsky, 2004). The impact of mothers of children with intellectual disabilities on social policies affecting their offspring, is detailed by Melanie Panitch in a book subtitled “Accidental Activists” (Panitch, 2008). This subtitle emphasize how the struggle to improve the rights of disabled people was significantly advanced by women who came to activism through their efforts to protect their children, efforts which had a widespread impact on closing down institutions in which intellectually disabled people had been confined.
Related to this is John Lord’s book on the history of the independent living movement in Canada since the 1970s (Lord, 2010). His study recounts the influence of disability activists and allies on policy makers in establishing autonomous or assisted living arrangements, so that disabled people are increasingly (though certainly not entirely) able to make their own decisions about how and where they wish to live. The inability of being able to escape medico-legal control in the community, no matter where one lives, is a subject of a study pertaining to Canadian disability activist history. In his book on “tranquil prisons”, a critique of community treatment orders in Ontario, Erick Fabris includes a discussion of the activist history of the No Force Coalition which opposed the enactment of these retrogressive laws for people with a psychiatric history (Fabris, 2011). As an activist himself before, during and after the enactment of this law in 2000, Fabris provides both a personal and historical account of psychiatric survivor activism at a crucial time in our history. His study contributes, like those by Starkman, Shimrat, Parent, Lepofsky and others to recording a history they were a part of as activists.
The above sources make essential contributions to Canadian disability history by detailing the influence that disability rights activism has had, and continues to have, on people who have been among this country’s most marginalized citizens. Indeed, people with disabilities insisting on citizenship rights is at the heart of this history which has only been ‘granted’ by the powers that be after sustained public protest. This protest has been largely home grown, even if influenced by international developments in the wider disability rights movement. Sharon Barnartt provides a comparative analysis between disability protests in the United States and Canada between 1970-2005 to underline this point. (Barnartt, 2008) She notes that activism north of the 49th parallel started later but that, generally, these protests were independent of one another with Canadian protests often being more specific to a particular group of disabled people than in the US. Her study points to the importance of studying the overall impact of disability protests on public policies, and within the disability community, over an extended period of time.
A further aspect of disability activism that deserves attention is using disability history in itself to advance greater awareness of, and inclusion for, people with disabilities in our communities and the academy. Ryerson University’s School of Disability Studies developed a highly regarded public history exhibit entitled Out from Under: Disability: History & Things to Remember (Ryerson, 2008) at the Royal Ontario Museum. It was also shown elsewhere including at the 2010 paralympics in Vancouver and can be viewed on-line (http://www.ofu.ryerson.ca/). This exhibit is one of a number of public history projects which reveal the way in which the history of people with disabilities in Canada is engaging the wider public about a past that many never knew existed. This includes web sites on:
the history of madness in Canada (http://historyofmadness.ca/);
the Psychiatric Survivor Archives, Toronto (http://www.psychiatricsurvivorarchives.com/);
Toronto Parkdale Activity Recreation Centre Living Archive Project (http://livingarchiveproject.blogspot.com/p/living-archive-project.html);
the history of eugenics web site in Alberta, under the “What Sorts of People” project (http://whatsortsofpeople.wordpress.com/category/history/history-of-eugenics/);
and tours of the 19th century patient built boundary walls at the former Toronto Insane Asylum (Reaume, 2010-2011).
The above efforts include people who live this history who are involved in preserving our own histories. Equally important, we are also involved in interpreting and re-interpreting a past in a way that reflects the social movements that spawned critical disability history in the first place.
Conclusion: The Future Of Canadian Disability’s Past?
Disability historical scholarship in Canada has grown out of the very activism which researchers, writers and archivists now document as part of our own engagement with the past and present. History can therefore empower the disability rights movement, engaging the very people whose past we are recording, while also helping to ensure that this history is no longer so easily ignored or dismissed. Just as disabled people insist they have a rightful place in Canadian society so too this claim is increasingly being asserted in works which record this country’s history, even though this is just starting to be felt in academia. To make this claim for inclusion in the historical record, as well as in the contemporary world, is a way of ensuring that the citizenship rights won through many years of struggle by disability activists and supporters are not taken for granted. Historical memory does not ensure citizenship rights, but it can help to promote and protect rights by reminding us of what happens when such rights are curtailed, or worse, utterly denied. As this brief survey reveals, there is a great deal more to be done in preserving, uncovering, recording and making available our disabled past and ensuring that it is tied into social justice struggles for inclusion and equality in the future.
Disability historians and activists (not mutually distinct categories as is indicated above) need to work together, along with professional archivists to ensure that our history is preserved. Much of this documentation exists around state run institutions where people were confined. Even here, however, existing records can be culled as happened with eugenics files in Alberta when, appallingly, in 1988 eighty per cent of records on 4785 people seen by the eugenics board were destroyed by the provincial archives. This ensures that a far more complete and representative history of this topic will be impossible to obtain (Grekul, et al., 2004, p. 365-66). Such an act of historical vandalism, especially when it comes to history some people in positions of power would prefer stays buried, or be less clearly documented, needs to be prevented from happening again through education and archival activism. Producing histories like those discussed here helps not only to record the history of disability communities, but it also helps to make archivists and the wider public aware of the importance of preserving this past.
It is equally important that people with disabilities and allies work to save and store records of activism, advocacy and events which we may have from the past in our own possession. As most disability organizations have scant resources in the first place, archival preservation may be low down on the priority list. Yet it has been done. The Society for Manitobans with Disabilities (SMD) which traces its history to 1946, with the current name being adopted in 1985, provides an important example of what is possible when it comes to preserving our past (http://smd.mb.ca/smd_history.aspx). SMD has preserved over 100 cubic feet of their organization’s documents dating back to the 1940s, catalogued and arranged into their own archives.<![if !supportFootnotes]>[ii]<![endif]>
The internet, as noted above, also has many possibilities for preserving and disseminating historical records. Yet, while digitization may help to make history more available through the world wide web (though accessibility also depends upon the type of software used), caution needs to be maintained about long-term reliance on the internet for preservation purposes. Digital records can disappear into cyber space as technology changes in decades to come, whereas paper format has much greater chance of survival down the centuries (as anyone who has worked in an archives knows, even given the fragility of old documents). New technologies, while important for helping to advance and record our history, also change and can be made inaccessible as the years go by. Thus ways of ensuring records are stored for posterity beyond the internet, need to be considered since the internet will one day morph into something else beyond our current imagination. Print copies of documents, on the other hand, have a much greater chance of long-term existence beyond our own transitory time on this planet.
Where to store such records is always a concern, especially since a central disability archives does not exist. If an organization or individual does not have the resources to preserve and store their own records over the long-term, working with local archivists in the community or region in which records were created is one possible solution to ensuring that the history of disability in Canada is preserved into the future for records that exist in private collections today. After all, what is in someone’s cardboard box (or on a computer hard drive) may very well contain a treasure trove of disability history waiting to be told. But first of all, resources like this need to be preserved in physically accessible ways to ensure that this history is documented for future generations. This is one of the main challenges facing disability history in Canada, as elsewhere, in the years ahead, along with researching and writing those parts of our history which we already have access to in public archives.
What might Canadian disability history be like in 2021? While predicting the future is a tricky business, especially for historians who should avoid claims of prophecy, it is worth speculating if only to hope that such academic day dreams offer some hints for the future. Generally speaking, a decade from the time these words are written will have additional edited collections and monographs which add to the growing body of work, particularly among scholars who engage in fields such as the social history of labour, women, indigenous peoples, racialized communities, sexual minorities and the development of public policies.
While all areas are in need of further investigation, historical studies on the period before the mid 1800s in Canada are especially needed as this area is completely unexplored. This earlier period is also the most difficult period about which to find primary sources given its distance from our own time and fewer obviously available records. It also relates to the fact that disabled people in the community are harder to find than in institutions. Since nearly all people with disabilities were not institutionalized in pre-1850 Canada, unlike in later periods for which there are thousands of asylum files, this requires more archival sleuthing. Uncovering disability history from this earlier period would in some ways be among the most exciting developments to hope for in the decade to come given the absence of our knowledge about what it was like to be disabled in colonial and pre-European contact Canada. Any findings from this era would make a truly unique contribution, not only to disability history but to the earlier history of this country where disabled people are completely unknown to later generations.
While it can hardly be claimed that disabled people’s history is widely known for the post-1850 period, it is obvious from this brief survey that the past century and a half has received all of our attention thus far because of more easily available primary sources, the closeness in time to our own experiences and, in the case of oral history, the ability to record first person accounts from people alive today. Indeed, oral histories of disability in Canada are probably one of the prime areas that will expand in the decade ahead given the desire to preserve first person accounts of disabled people’s experiences on a particular topic. The form which these oral histories will take, however, may prevent unedited transcripts from being preserved given the requirement to destroy such records after a period of time by university-based researchers in order to preserve confidentiality. This ironically leaves the potential for some disability history to be both produced and then made to perish due to legal and ethical obligations of the researcher, since not all of an unedited transcript will likely be used. Nevertheless, published work from such research, as with Tracy Odell’s study, has the potential to yield historical riches from what is preserved in such interviews.
The history of disability outside of the main population centres, at least for the post-Confederation era, is also to be hoped for with work to be done on disability in the Maritime provinces, Newfoundland, the prairies and Northern Canada. Work on disability history in Quebec is another area where new research can be anticipated, with Laurence Parent’s work in this area being an example to which we can look forward. Race and disability in Canadian history is another area where much research needs to be done with hopeful signs for the future with the work of researchers such as Nadia Kanani (Kanani, 2011).
The second half of the 20th century will also be a likely focus of significant new research with its closer connection for everyone who lived during part of this time. The huge social impact of deinstitutionalization and transinstitutionalization along with the work of activists within the disability community are major areas of research that are likely to be more widely studied by 2011. Being inspired by those who went before can be as good a reason as any to engage in this research, so long as we are also critical about those we may admire, whilst also recording how they made mistakes and could be as offensive as anyone else. Studying more recent times also allows for direct engagement of disabled people with their history through participatory research projects such as producing oral histories which is another reason why this period is likely to see significant expansion.
Digital disability history archives are also likely to expand given the wider scope for disseminating information about our past to a wider audience than ever before, thus creating new interpretative and preservation possibilities. What form these new technologies might take as the electronic age continues to zap around the world, is an area that is best left to more technically informed people to speculate about than myself. Yet, whatever electronic wonders the future holds, there can be nothing more important in maintaining and developing contemporary records of Canadian disability history than preserving the ‘hard copy’ – paper – of what exists now. This includes printing and filing in folders emails that activists use today to organize events and political actions, history that is easy enough to lose when a computer crashes, emails are deleted or technology goes out of date rendering stored material inaccessible (Morris, 1998, 35). Selection of what electronic sources to print and keep is not so simple, but if people think about it and do it, contemporary disability history will survive past the current computer age.
Whatever form our past takes in the future, we can only interpret it if we make a deliberate effort to maintain and continue to collect our documentary heritage that is all too easily forgotten and discarded – like so many disabled people were in the past and still are today. As this article indicates, there is every reason to be encouraged about the continued growth of research into Canadian disability history. There is also much work to be done in the archives where this history waits to be uncovered and in the wider community where this history is happening every day.
Dedication And Acknowledgements:
This article is dedicated to the memory of Doreen Wilson, 1931-2011. I would like to thank two anonymous reviewers and editor Jay Dolmage for their helpful comments.
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<![if !supportFootnotes]>[i]<![endif]> Unfortunately, MacMillan also adheres to a somewhat conservative view of the uses of history. While she credits the contributions which social historians have made over the past forty years, such as in women’s history and gay and lesbian history, she also writes “…we ought not to forget the aspect of history which the great nineteenth century German historian Leopold von Ranke summed up as ‘what really happened’” (MacMillan, 2009, 37). This suggests that certain histories, like those with which this article are concerned are marginal and trivial, only worth reading as a form of light historical entertainment. Disability historians, like those in other fields of social and cultural history, are also concerned with ‘what really happened’ among the people and places we examine, even if from widely divergent approaches.
<![if !supportFootnotes]>[ii]<![endif]> Information on the scope of the archives preserved by the Society for Manitobans with Disabilities was kindly provided to me by Bev Pike, Archivist, email communications of October 4 and October 24, 2005.