Towards renewed descriptions of Canadian disability movements:
Disability activism outside of the non-profit sector
Christine Kelly, Ph.D., Adjunct Professor, School of Canadian Studies, Carleton University
christine_kelly@carleton.ca
Abstract
There are a limited number of academic accounts of disability movements in Canada; however, the existing literature provides relatively consistent descriptions. According to this literature, the disability movement seeks incremental, rather than radical, change through government-led policy, legislation and legal challenges. This work explicitly or implicitly uses the activities and actors from non-profit disability organizations as the platform for documenting and analyzing the movement. In this article, I argue the documented parameters of the Canadian disability movement are only part of the picture. There is a much broader and conflicted world of activism in Canada, constituting multiple disability movements. This article looks beyond the non-profit sector and incorporates expanded definitions of 'activism' inspired by third-wave feminisms to reveal a more complex picture of contemporary Canadian disability movements. The article proceeds with a brief summary of existing descriptions of the disability movement in Canada. I then discuss the challenges faced by non-profit organizations in a period of hyper-neoliberalism and suggest social and economic factors push radical and creative disability activism outside of this sector. I provide five counter examples of Ontario-based disability activists and artists who disrupt the existing accounts and broaden our understanding of who and what constitute disability activism. The article concludes by providing some questions and tentative characteristics that head towards renewed descriptions of disability movements in Canada.
Keywords
activism; art; Canada; disability movements; do-it-yourself; leadership; neoliberalism; non-profit; radical; third wave
Towards renewed descriptions of Canadian disability movements:
Disability activism outside of the non-profit sector
In 1981 Allan Simpson, the charismatic National Chair of the Coalition of Provincial Organizations of the Handicapped[1], discreetly followed then-Minister of Justice Jean Chrétien into the washroom (Peters, 2003). Simpson cornered Chrétien during the meetings of the Special Joint Parliamentary Committee on the Constitution to persuade him to include mental and physical disability as defendable differences in the Charter of Rights and Freedoms. Shortly after Simpson's encounter with Chrétien, and many other creative lobbying tactics, the section was amended and disability was included in what Peters (2003) terms an "eleventh hour decision" (p. 131).
With passionate and charismatic leaders, the scene set by other civil rights movements, and relatively generous federal government support for disability organizations, the 1980s was what Neufeldt (2003a) describes as "a time when disability was as close to being a priority as it could be" in Canada (p. 59). Securing the inclusion of disability in the Charter is often regarded by Canadian disability scholars as the pinnacle of this decade, and further, of disability movement success in Canada (Peters, 2003). It was an impressive feat that demanded perseverance, resourcefulness and, importantly, creativity. It is this final quality that I seek in more recent examples of disability activism in Canada, as neoliberal constraints on disability organizations can hamper the expression of creativity and radicalism.
The field of disability studies developed alongside this foundational activism in Canada, and a few scholars identify characteristics of Canadian disability activism. This work explicitly or implicitly uses the activities and actors from non-profit disability organizations as the platform for documenting "The Canadian Disability Movement". In this article, I argue the documented parameters of the Canadian disability movement are only part of the picture. There is a much broader and conflicted world of activism in Canada, constituting multiple disability movements that predominately take place outside or beside non-profit organizations. My argument builds on involvement with youth activists and artists at the 2011 Youth Activist Forum with the theme "Doing disability differently," held at Carleton University in Ottawa (Kelly & Carson, 2012). At this event, we hosted activists with disabilities who enact disability politics in myriad ways. I present activities of some of the speakers featured at the Forum and additional examples from outside our event in order to trouble existing accounts of disability activism and invigorate the ways we think about and carry out activism. My analysis and examples are situated within an Ontario context, but in light of general increased protest activity in recent years and geographically diverse online disability communities, I am confident this type of activity is happening in other Canadian provinces and internationally.
This article is inspired by third wave[2], 'do-it-yourself' feminists who present expanded definitions of activism that challenge common understandings of social movements. The techniques of third wave feminism extend beyond traditional lobbying, letter-writing, and single-identity approaches (Mitchell & Karaian, 2005; Pinterics, 2001). In the global north, third wave feminists often work outside of formal organizations and express their views through blogs, fax-jamming, social media, do-it-yourself crafting and publishing, music, among other tactics. Mitchell and Karaian (2005) comment "Third-waver feminists ask, What constitutes resistance and activism? How effective are these kinds of resistances?" (p. 62). Third wave feminists build on previous generations of feminists, but value individual expression and attempt to incorporate critiques from people of color and transnational feminists. Indeed, the third wave also includes renewed theorizing and activism originating from the global south. Through exploring complex issues such as sex workers' rights, globalization, pop culture representations of women, and transgender issues, among others, third wave feminists are not afraid to disagree and, unlike many of the feminists before them, they do not attempt to unify the diverse movement. In some ways, the approach of the third wave resonates with the concept of 'everyday politics' based in neo-tribal theory and utilized in youth studies to validate alternative forms of political participation (Riley, Griffin, & Morey, 2010). However, unlike participants in the electronic music culture discussed by Riley, Griffin and Morey (2010), third wavers openly identify as political and social activists.
The existence of do-it-yourself feminism was (is) notoriously overlooked by the media in the global north who declared feminism "dead," and all of its goals achieved. The media ushered in a "post-feminist era" where politically apathetic young women feel entitled to rights won by the feminists before them (Faludi, 1991). At times the tactics and issues of do-it-yourself third wave feminists are even discounted as ineffective and unimportant by some of the preceding generations of activists (Steenbergen, 2001). This ongoing tension represents a misunderstanding of evolving worldviews undergirding third wave feminisms. These worldviews are shaped by politics, economic shifts, globalization and the history of feminism. Third wave feminists developed tactics in response to their contexts, which in Canada, were the early days of the neoliberal transition. A similar misunderstanding is emerging in scholarly accounts of the Canadian disability movement that seem to overlook certain tactics and types of activists.
This article does not intend to disprove the scholarly accounts of disability activism, as the research accurately documents a rich and ongoing history of disability activity largely operating through Canadian non-profit organizations. Rather, this article looks beyond the non-profit sector and incorporates third wave feminist definitions of activism to reveal a more complex picture of contemporary Canadian disability movements. I proceed with a brief summary of existing descriptions of disability movements in Canada. I then discuss the challenges faced by non-profit organizations in neoliberal Canada and suggest social and economic factors push radical and creative disability activism outside of this sector. I provide five counter examples of disability activists and artists who disrupt the existing accounts and broaden our understanding of who and what constitute disability movements in Canada. The article concludes by providing some questions and tentative characteristics that head towards renewed descriptions of disability movements in Canada.
Describing "The" disability movement in Canada
There are a limited number of academic books, articles and chapters describing disability movements in Canada; however, the existing literature offers relatively consistent descriptions. Diane Driedger's (1989) book The Last Civil Rights Movement is an early, first-hand account of disability activism in Canada that demonstrates the central role of Canadian activists in establishing a formal international disability movement. Driedger's manuscript describes the establishment of the non-profit organization Disabled Peoples' International, and demonstrates the resourcefulness required by disability leaders to organize logistically-challenging events that brought together disability activists from all over the world in the 1980s. Other accounts highlight how the Canadian disability movement is state-focused and has relatively co-operative relationships with municipal, provincial and federal governments (Peters, 2003; Valentine, 1996; Valentine & Vickers, 1996). For example, some accounts describe the roles of individuals or representatives of organizations in consulting on advisory committees for policy making (Kitchin & Wilton, 2003; Stienstra, 2003). According to this literature, the Canadian disability movement predominately employs "non-confrontational" (Chivers, 2007) or "lobbying" tactics (Carroll & Ratner, 2001). In an exploration of a more confrontational form of activism, protests, Barnartt (2008) notes Canadian disability protests (in contrast to American ones) are state-focused and primarily achieve "policy successes". The examples for the arguments largely build on the activities of non-profit disability organizations in Canada, such as the Canadian Association of Community Living, Independent Living centres, and the Council of Canadians with Disabilities, among others. Most directly, Neufeldt's (2003b) chapter "Growth and evolution of disability advocacy in Canada" provides a history of disability-related non-profit and charitable organizations in Canada and Lord (2010) details a history of Independent Living centres as evidence of the Independent Living Movement in Canada (see also Lord & Hutchison, 2007).
Michael Prince (2009) takes a broader approach and identifies five arenas that constitute the disability community in Canada: social service sector organizations; a policy community; a new social movement; a constitutional category of citizens; and a research and knowledge production network. In an account of the new social movement component of the community, Prince (2012) characterizes Canadian disability activism as "a form of social liberalism" (p.4) that serves as a valuable counter-narrative to neoliberalism. Prince further argues that the Canadian disability movement "is not an anti-capitalist movement or is it anti-globalization" (p. 11) and it is "state-oriented" (p. 13). Of note, there is a shared concern in this literature about the state of disability activism and the lack of new leaders from the 1990s onwards (Hutchison, Arai, Pedlar, Lord, & Whyte, 2007; Lord, 2010; Neufeldt, 2003b).
Piecing together these accounts reveals a clear picture of the disability movement in Canada, with one exception by Reville and Church (2012), to be discussed later. According to the other articles, the disability movement largely operates through non-profit organizations and the individuals who work for these organizations. The movement seeks incremental, rather than radical, change through government-led policy, legislation and legal challenges. The issues and approaches are influenced directly by American and United Kingdom activism, although there are many distinctly Canadian features. The activists often work cooperatively with varied levels of government and the results of their efforts are clearly measurable (e.g., inclusion in the Charter, establishment of a Direct Funding attendant service program in Ontario, see Yoshida, Willi, Parker, & Locker, 2004). According to the accounts, the Canadian disability movement lacks youth and new leadership, but this type of activism is ongoing. Disability organizations continue to bring forward court challenges and contribute to policy development, for example through the Via Rail Case and One person/One Fare Case, both led by CCD, and work to establish, ratify and implement the United Nations Convention on the Rights of Persons with Disabilities (for more details, see www.ccdonline.ca). In Ontario, recent efforts focus around the Accessibility for Ontarians with Disabilities Act, the Transformation initiative aiming to overhaul the provincial developmental service sector, and one of the latest manifestations of deinstitutionalization, a class action suit against former large-scale institutions led by people with developmental disabilities and their allies. Many of these examples can be interpreted in the context of the descriptions of the disability movement outlined above. As non-profit organizations are positioned as the primary vehicle for the disability movement in Canada, I now turn to socio-economic climate in order to outline some of the challenges facing disability organizations.
Non-profit disability organizations in a period of hyper-neoliberalism
From the 1990s onward, the political and economic climate in Canada is commonly characterized as "neoliberal," that is, a system in which public and business decisions privilege free-market policies, privatization and "small" governments (Harvey, 2005). Neoliberalism is far more than a system for organizing economic markets. It also encompasses interwoven ideological commitments and evolving trends in the overdeveloped world and the global south. The ideological commitments to individualism and choice frame citizens as consumers who are responsible for their inability to secure employment in the drastically altered economy (Larner, 2000). This sentiment is demonstrated, for example, by Minister of Finance, John Flaherty's infamous public statement in spring 2012 that the "only bad job is not having a job". The push for "small" governments diverts attention away from the increased roles governments play in surveillance, security (Bhandar, 2004) and bailing out large corporations and banks while cutting public services in ways that primarily affect the working class and young people. Neoliberal 'small governments' create a 'large' presence experienced by the majority of the population, that is, the "99%" who organize against the neoliberal regimes through Occupy Movements. Neoliberalism is also characterized by the erosion of full-time secure employment and the corresponding rise of temporary, contractual and part-time "precarious" forms of employment (Vosko, 2000) as well as a globalized economy predicated on immigration and the exploitation of labour in the global south. The dramatic social, political and economic changes in the first decades of the new millennium, including galvanization of youth voters in Canada, the 2008 economic crisis, the ongoing lived experience of recession in spite of public government rhetoric about Canada's economic recovery, major cuts to the public service, Quebec student protests, other protests worldwide, and so on, suggest we may be in a period of accelerated, or hyper-neoliberalism.
Disability movements and organizations in Canada must operate amid this web of trends. As government roles shift through neoliberal policies, federal and provincial governments increasingly rely on the non-profit sector to fill in the gaps of diminishing government programming and services. As such, neoliberal governments have a tendency to shape the agendas of non-profit organizations through substituting core funding with highly controlled project-based funding that typically disfavours or eliminates equity-seeking advocacy work (Hall & Banting, 2000; Incite! Women of Color Against Violence, 2007). Vera Chouinard's (1999) account of the Disabled Women's Network demonstrates how restructuring in the early 1990s exacerbated barriers for activism by women with disabilities. This is further seen in the restrictions and requirements of charitable status. Organizations with "political purposes" including efforts to "retain, oppose, or change the law, policy, or decision of any level of government in Canada or a foreign country" are not eligible for charitable status in Canada (Canada Revenue Agency, 2011), yet charitable status is a prerequisite to accessing the majority of funding sources in Canada (Levasseur, 2012). From my experience with the Youth Activist Forum, the term 'activist' was a point of contention and substantially limited our fundraising options (Kelly & Carson, 2012). Non-profit organizations, particularly those with social movement histories or networks, struggle to adapt to new roles within the new constrained funding environment in Canada.
In light of these constraints, many non-profit organizations are forced to become less political and to distance themselves from ideas of advocacy and activism. While many of the academic accounts of Canadian disability movements discuss the activities of disability organizations, many, if not all, of these organizations will not use phrases such as 'advocacy' 'activism' 'disability movements' or 'empowerment' in public material and mission statements, instead operating under more neutral terms such as 'public education' and 'self-advocacy.' For example according to Lord (2010) "the Canadian Independent Living movement decided early on that it would stress individual advocacy (and self-advocacy), not collective advocacy. In part, this decision was made because CCD and other national groups were already doing the collective advocacy" (p. 159). Yet, even CCD does not include the word 'advocacy' in its mission statement, although it has managed to retain the phrase 'human rights.'
In Canada, some of these changes directly influence the activities of disability organizations. Of particular note, the Court Challenges Program was eliminated in 2006; this program provided funds for individual and collective challenges under the Canadian Charter of Rights and Freedoms (Brodie & Bakker, 2008).[3] As such, it is increasingly difficult for disability groups to afford to raise challenges, thereby limiting the potential benefits of the historic inclusion of disability as a defendable category of the Charter. Further, the increased requests for individual consultants from the disability sector to sit on advisory committees and comment on drafts of policy documents can greatly immobilize disability organizations with limited resources and capacities. Of note, this type of consultation rarely happens on the terms set by community organizations.
Some the readers will know firsthand that disability non-profit organizations are highly adaptable, yet they are struggling to survive in this climate. Unfortunately, even "user-led disability organizations" have to operate in a system that favors groups with charitable status and must be accountable to diverse funders who may shape their agendas (Hutchison, Arai, Pedlar, Lord, & Yuen, 2007). Non-profit organizations in Canada, especially disability, human rights, and social justice organizations, are barely holding on within the constraints of hyper-neoliberalism and risk alienating already limited funding sources if they choose to explore creativity, radicalism or humour in their work.
There are other grassroots' disability groups and individuals who do not have charitable status and operate with less structure, and as I will demonstrate shortly, with more creativity. The impact of neoliberalism on the non-profit sector has forced more radical and creative forms of disability activism to operate outside (but often alongside) non-profit work, and as such, has been overlooked in academic accounts of "the" disability movement in Canada.
New forms of disability activism in Ontario
I now present five examples of disability activism in Ontario that complicate the existing accounts of Canadian disability activism. These accounts are not state- or policy-focused, are not social liberal, but are radical, creative, sometimes confrontational and significantly, take place outside of non-profit organizations. The examples do not represent a disconnect between non-profit work and alternative activism, as most individuals are simultaneously involved in disability organizations in other capacities, as employees, as board members, to access services or resources, and so on. Many disability non-profit organizations are supportive of these efforts, while they cannot do the work themselves. For example, in the case of the Youth Activist Forum, myself and another organizer are board members for Citizens with Disabilities-Ontario (CWDO), a non-profit group that does not have charitable status at this time. CCD partnered on the event in name, providing administrative support and access to a charitable registration number. The Youth Activist Forum thus took place under both CWDO and CCD, but the activists and artists we featured were not necessarily involved in our organizations in formal capacities, conducting their varied work 'alongside' us.
Criptonite at Peterborough Arts Week
Jes Sachse is a Toronto-based artist most famous for the ad campaign "American Able" with photographer Holly Norris spoofing the American Apparel company as well as her nude self-portraitures. In September 2011, Sachse took on a curator role for Criptonite, a disability arts exhibit during Peterborough Arts Week. Art is not always interpreted as a form of activism, which can be beneficial for navigating constrained funding landscapes that use the terms 'advocacy' and 'activism' as criteria to reject a proposal. Sachse accessed a small amount of funding through the YWCA for the exhibit, although she was barely able to cover the costs of disability accommodations and artist stipends (personal communication). The YWCA hosted the event and supported the artists, but did not do the work directly, providing a safe distance from the radical creativity. Criptonite featured a variety of mediums and artists, including Jeff Preston and Clara Madrenas' popular webcomic Cripz, music videos in la langue des signes Québécoise by media artist Chantal Deguire, digital short stories by women with disabilities, and a live performance by singer/storyteller Kazumi Tsuruoka and pianist Tania Gill. As curator, Sachse paid attention to how the pieces were displayed and the location of the performances, choosing highly visible and public locales (personal communication). For example, Sachse printed out a large-scale copy of the inaugural Cripz webcomic and displayed it on a fence at wheelchair-level in the Peterborough YWCA parking lot. Sachse transformed the virtual into material, and used the historic technique of wheat pasting to contrast the online medium of webcomics. This location receives a high amount of pedestrian traffic, positioning disability as timeless, boundless and highly public art. Criptonite challenged the marginalization of embodied disability experiences and the therapeutic frameworks disability artwork is often subsumed by.
By featuring and curating a number of disability artists, Sachse worked on the level of meaning-making, and at least temporarily changed the cultural tone around disability in Peterborough. Sachse curated the next iteration of Criptonite at Peterborough Arts Week 2012. Sachse's work and the ongoing work of the Criptonite artists represent valuable politics of culture and identity, and are not state-focused, or easily classified as 'social liberal.'
Vibrant Mad Movements
Other examples of discordant disability activism in Canada are the mad pride, psychiatric survivors and other 'mad' movements (Fabris, 2011; Morrison, 2005). Individual patient accounts that challenge dominant meanings of mental illness can be found as early as the 19th century, and the collective psychiatric survivor and anti-psychiatry movement erupted in the 1970s (Reaume, 2002). Developments in this sphere build on the work of these predecessors (Reville & Church, 2012). The Ontario event that garners the most attention is Mad Pride Week, which has existed in various forms in Toronto since 1993 (Mad Pride Toronto, 2012). Mad Pride Week is organized and supported by a variety of artists, activists and anti-psychiatry, psychiatric-survivor, and mad-pride groups. Inspired by Queer pride weeks, this week includes art events, a 'bed push,' a Mad Hatter's Tea Party and is rife with sardonic humour related to madness and mental illness. The activists create items such as buttons and signs and 'cultural jam' existing items such as hospital bracelets and t-shirts from the Centre for Addiction and Mental Health with slogans such as "Proud to be Crazy" and "Get Mad!" The activists critique medicalized approaches to mental illness, ranging from playful teasing to angry admonishments and complete rejections of psychiatry. Mad Pride Week represents political complexity, ambivalence around medical interventions, and a vibrant art scene that seeks to subvert and reinvent cultural representations of madness.
In addition to Mad Pride Week, a group formed called Recovering Our Stories. This group
is a grassroots collection of individuals who have chosen to come together at this moment in time to raise questions and concerns about how institutions used our stories in their own interest. We seek to create spaces where we can resist, reinvent, and reclaim our stories. (Recovering Our Stories, n.d.)
This group formed in response to the insidious demands of medical researchers, human resource professionals, and community organizations for mad people to share depoliticized, individualized stories of recovery for various 'mental health awareness' campaigns. Recovering Our Stories demonstrates the responsiveness of mad movements in Ontario, as the trend towards soliciting individual stories as an act of mental health awareness is a relatively recent phenomenon. Mad movements encapsulate creativity and target culture, not necessarily legal or policy structures.
Disability Pride March
On October 29, 2011 during the pinnacle of Occupy Movements in Canada, Melissa Graham, board member of CWDO, student, and blogger organized a Toronto Disability Pride March. Similar to Mad Pride Week, but on a smaller scale, the Disability Pride March aimed to increase the awareness of disability politics. A group gathered and travelled from Nathan Phillips Square to Occupy Toronto in St. James Park (Toronto Disability Pride March, 2011). Graham did this work outside of her formal roles with CWDO and advertised the event through Facebook. Graham positions this event as an example of radical disability politics, although it had support from mainstream politician, Mike Sullivan, M.P. York South-Weston and NDP Disabilities Deputy Critic. The success of the March led to a follow-up event in fall 2012. Like the Occupy Movement, the original Disability Pride March did not have a concrete goal but took issue with the dominate structures that characterize and govern daily life in contemporary contexts.
Operation Stairbomb
London, Ontario-based Jeff Preston, a PhD student, one of the artists featured at Criptonite, and also known for his Get Mobilized! journey across Ontario in his electric wheelchair, often works with artist and writer Clara Madrenas to represent a humorous approach to disability. For example, Preston and Madrenas explain one initiative called Operation Stairbomb:
Stairbombing was invented to help people understand (and empathize) with why accessibility is important, by "closing down" stairways with caution tape and a snarky "Out of Service" sign commenting on how annoying it must be to not be able to access a place they really want to go. (Preston, 2011).
Preston and Madrenas use yellow-caution tape to cordon off staircases to inaccessible buildings, closing the entrances for being exclusionary. They watch the reactions of able-bodied people passing by who often become annoyed when they cannot enter. Stairbombing represents the low-tech, do-it-yourself style of third wave feminisms. It is noteworthy that stairbombing is not state-focused and is confrontational in nature, in contrast to the accounts of Canadian disability movements described above. Stairbombing raises questions of access through public statements, and not through the legal channels or the application of legislated accessibility standards.
DAMN 2025
DAMN (Disability Action Movement Now) 2025 is perhaps the most stark contrast to existing accounts of Canadian disability movements. DAMN 2025 is a cross-disability, Toronto-based and radical, with a strong anti-capitalist stance grounded in poverty mobilization. DAMN 2025 describes themselves as:
a direct action group currently bringing together disabled people, those affected by ableism, and our supporters. We believe that accessibility is more than adding in ramps, it is about ensuring that things are made accessible in a wide variety of ways to a wide variety of people. It also means looking at how different identities intersect and ensuring that there is room for everyone in our struggles. … Whether it is blocking access to an inaccessible subway station or working with other groups to bring over a thousand people out for Anti-Poverty Day of Action, we have and will keep fighting for what disabled people need to thrive. (DAMN 2025, 2008).
This group epitomizes grassroots, and certainly does not have (or strive to have) charitable status or even to incorporate as a non-profit organization. DAMN 2025 operates almost underground, as the only publicity materials are a webblog and a news article by the Toronto Star, and other blogs linking to these sites (DAMN 2025, 2008; Henderson, 2007). DAMN had a visible role in an anti-poverty march in order to highlight the inadequacy of the Ontario Disability Support Program and openly endorses confrontational tactics.
Aside from this distinct approach, the very name "DAMN 2025" is a satirical critique of the Accessibility for Ontarians with Disabilities Act (AODA), a hard-won, and carefully developed legislation that promises an accessible Ontario by the year 2025. There is an assumption of consensus around the AODA, as many other individual activists and disability organizations cooperatively worked with municipal and provincial governments (controversially, alongside representatives from the private sector) to develop the standards, and continue to sit on local accessibility advisory boards (Kitchin & Wilton, 2003). The development of the AODA largely represents the 'Canadian approach' to disability politics documented in academic literature. In contrast, the DAMN group declares, "damn 2025!" instead demanding radical redistribution and action now. As such, not only is the approach of this group much different from the established accounts, but the group also critiques the work and approaches of the more well-known disability organizations, revealing conflicting visions of disability politics in Canada.
Discussion: A wealth of Canadian disability activism
There are many other examples that I do not have space to discuss in this article, such examples include mad art by Sarafin, the student-led protest against controversial philosopher Peter Singer in Ottawa in 2010, the ongoing work by SprOUT, a group of gay, lesbian, bisexual and questioning youth with intellectual disabilities in Toronto, poetry and spoken word by artists such as Onyinyechukwu Udegbe, alternative care collective arrangements, sex and disability awareness promoted by Loree Erickson, and many others. There is a vibrant wealth of complex disability activism taking place in Ontario, and hopefully Canada, around a multitude of issues.
At this juncture, let us return to a description of Canadian disability activism by Michael Prince (2012):
Most of the [Canadian] disability movement's activism is squarely within conventional political practices and governmental structures, such as parliamentary committees, advisory councils, and election campaigns. As a form of social liberalism, disability activism is a wavering mixture of criticism and collaboration with governments, and of visionary ideals and incremental reforms. (p.24)
The type of activism described by Prince takes place in Canada, but as demonstrated by the examples briefly outlined above and the many others left out, it is not the only form of disability activism. Sachse's curator role and Preston and Madrenas' stairbombing initiative do not "sit squarely within conventional political practices;" mad movements and the disability pride parade do not clearly represent "social liberalism;" and, DAMN 2025 explicitly rejects "incremental reforms". There is not a singular disability movement in Canada, but multiple, complex, and at times conflicting disability movements. Carroll and Ratner (2001) characterize disability as "a bivalent issue, calling up politics of both recognition and redistribution" and thus the examples operate more on the level of recognition than redistribution, with the exception of DAMN 2025 that weaves these aims together. Yet, the activism takes place outside of the constraints imposed on non-profits and demonstrate parallel and multiple disability movements operating in Canada.
Prince (2009) similarly writes about disability politics working for the three aims of recognition, redistribution, and representation. He notes "while disability theorists and activists are attentive to discursive aspects of disability, they emphasize material dimensions of struggles for justice and equality" (Prince, 2009, p. 12). Prince discusses cultural absences of disability as well as actions that "include potential and actual measures by state or societal organizations involving persuasion, research, expenditures, taxation, service provision, or laws and regulations" (p.13). As demonstrated in this article, Prince's approach does not sufficiently cover examples of actions in the cultural realms of art or radical activism of lesser-known groups.
The activities highlighted in this paper are what Rosemarie Garland-Thomson (2009) calls "visual activism" where people with disabilities put "themselves in the public eye, saying 'look at me' instead of 'don't stare' (p.193). According to Garland-Thomson, visual activism is the first step towards making people think and act differently, although she admits, "The risk of all activism is that it will not make this last leap from intent to effect" (p.193). Perhaps the non-linear and abstract arcs between artistic and culturally-based disability activism and measurable, material changes are why this work is overlooked in academic accounts. As demonstrated by feminist movements, that does not mean this work is unimportant, or non-existent.
In an article on mad movements in Toronto, Reville and Church (2012) "trace the history of mad activism in Toronto through the presence of ten individuals snapped in a casual photo" (p. 199) outlining some intergenerational differences. This is a rare example of a scholarly account that documents the diversity within a branch of Canadian disability movements. They explain:
We would argue, as a broad characterization, that one of the defining fault lines in survivor activism is between groups that refuse any sort of connection to 'the system,' and groups that see opportunities in working with other 'stakeholders,' including government. The former tend to organize independently, often for/around public protest, while the latter make strategic associations for the sake of achieving specific outcomes. (p. 197-198)
Reville and Church cherish the diversity captured in the photo, a diversity that includes intergenerational activists who laid the foundations of psychiatric survivor movements as well as mad artists who work outside of 'the system.' Tensions between radical and more mainstream approaches are not unique to mad movements as all social movements must address these foundational questions; however, it is distinctive that Reville and Church discuss these tensions in an academic account of Canadian disability movements. This diversity can veer into tension, and addressing these types of characteristics is missing in most scholarly accounts of Canadian disability movements.
Towards new descriptions of Canadian disability movements
The examples in this paper demonstrate a need for renewed scholarly descriptions of Canadian disability movements. It is out of the scope of this paper to completely detail what such descriptions might include, but I will begin the conversation by raising some points for consideration.
1. Self-naming
Significantly, many of the groups and individuals listed in this paper actively claim the title and identity of 'activist' in contrast to the non-profit organizations with charitable status who must disavow this label, at least in public materials. Disability non-profit organizations arguably avoid activist language order to keep and broaden funding options, but it may be time to question this practice. If a movement does not name itself as such, are the organizations still doing critical activist work? Does this language take place 'behind' the mandates and public documents? The ability and willingness to endorse activist language on an individual or organization-level is a difficult move in this climate. As it is common for disability circles to require people with disabilities to 'self-identify' in order to subvert the power of the medical and social service industries, it may also be necessary for disability organizations to assert an identity as 'part of the movement.' There are limits to this, as seen in the example of REAL Women Canada, a group notoriously known for undermining women's rights, who confuse both informed and uninformed public by co-opting political language of feminist movements. In any case, the willingness of organizations to identify as part of a social movement warrants further consideration.
2. The limits of charity
Renewed descriptions of Canadian disability movements might require a narrowing of the parameters set forth by scholars such as Prince and Neufeldt, as I am not convinced we can include all of the activities of non-profit organizations, and especially, of organizations with a charitable approach. As Shakespeare (2006) argues, charities are increasingly addressing oppressive histories and practices and moving to adopt more empowering frameworks. As such, a strictly anti-charity stance is inadequate, yet these organizations should not be free from criticism. Some of the issues we must consider include: Can service delivery be form of activism? In the case of the Ontario Direct Funding program, which manages to retain valuable cultural messages about 'care' in program information, it may well be (Kelly, 2012). Organizations with charitable approaches raise large amounts of funds by drawing on dominant messages about disability, cure, and pity. Should organizations affiliated with disability movements strategically mobilize around similar messaging to address the financial difficulties they are facing? These are the types of questions we can consider in formulating renewed descriptions of Canadian disability activism.
3. Widespread contributions
Disability activists contribute to other social movements in a variety of ways, including bringing disability politics to these agendas. We must acknowledge the ways in which disability activists enhance cross-issue movements such as Occupy Movements and the protests against the G20 summit in Toronto in 2010. From the examples in this paper, Graham's disability pride parade took place with support from and in the context of Occupy Toronto; Sachse intentionally included women of color, Deaf people and Québécoise elements in Criptonite; and members of DAMN 2025 participate in coalitional anti-poverty work and support many issues that are not typically considered 'disability politics.' In these settings it is possible to grasp the diversity and innovation represented by emerging leaders and artists who are willing to work across issues and identities for revolutionary change.
4. Varied political orientations and tactics
As most clearly seen in the disconnect between the approach of DAMN 2025 and the individuals who sit on advisory committees for the AODA, Canadian disability movements include varied political orientations and tactics. These orientations range from conservative to social liberal to more radical, anti-capitalist stances. Renewed descriptions must account for these tensions and diversity in order to accurately depict Canadian disability movements.
5. Adaptability
The examples in this article clearly demonstrate an adaptability and resourcefulness among disability movements in Canada. Activists seek out issues and tactics that will 'work' in a highly restrictive socio-economic and political climate. If the non-profit sector is too restrained, the activists choose to work outside, or alongside it. This adaptability can be reflected in our accounts of Canadian disability movements.
6. Creativity and art
Finally, and with some urgency, it is essential that we include the work of disability artists in our accounts of Canadian disability movements. Canadian artists face some of the most difficult challenges for making a living through their work, and yet provide invaluable cultural commentary. Disability artists make many sacrifices to do their work, and contribute in immeasurable ways that often span generations and audiences. The material changes made through disability art may be difficult to track and measure, but this should not discount their work in accounts of disability activism. Rather, disability artists challenge us to understand and consider the implications of the activist work that they do.
As I argue elsewhere with Carson (2012), it is increasingly difficult to create spaces for youth and alternative disability activists to come together and thrive. As disability studies scholars, allies, and perhaps activists ourselves, it is important to support these activities and spaces whenever possible, including by acknowledging many forms of activism in our scholarly work. Acknowledging different activist approaches does not undermine the relevance of the disability non-profits, especially when many activists contribute to or access services from these organizations in other capacities. The most effective activism emerges creatively, in unexpected ways as demonstrated by the opening vignette of Allan Simpson in the washroom with Chrétien. We cannot discount the activities and issues of new leaders, even if they are unfamiliar to us, disrupt our understandings, or create tension, as this type of activism is not the future of disability movements in Canada, but the present.
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[1] Now the Council of Canadians with Disabilities (CCD).
[2] 'Third wave' refers to feminist movements from the early 1990s onward, in contrast to the second wave feminist activism of the 1960s and 1970s, and the first wave activism in the late 19th and early 20th centuries. There are limits to the 'waves' analogy, as there are inconsistencies and intergenerational overlaps between these periods (Howie & Tauchert, 2004). However, the wave analogy is useful for broad distinctions.
[3] The Court Challenges Program was partially reinstated in 2008 for language claims only.