Abstract

With disability representing a diverse array of experiences and identities, it seems unlikely that advocacy groups would be able to agree on concrete policy issues. And yet, there does appear to be consensus in the global North on a number of topics. This paper explores one such example, advocacy around direct funding models of personal assistance in order to ask the question: What are the implications for the collective identity of a social movement when groups coalesce around very particular issues? I uncover the implicit identity underlying direct funding advocacy, and how mobilizing around this identity has lead to substantial success in terms of instituting direct funding programs. However, the identity does not 'disappear' when the programs are actualized, leading to the exclusion and marginalization of many individuals from both specific programs and social movements. This collective identity has significant consequences for disability movements in the global North, how disability is defined and at times it results in conservative political demands. This paper suggests that a 'collective of individuals' approach to conceptualizing and enacting social movements represented by Titchkosky (2003) and Do-It-Yourself feminism may hold potential for future disability activism.

Introduction

Since disability studies and disability activism have formally entered the academy and public realm, scholars and activists alike have consistently struggled with how to unify, include and represent the increasingly wide variety of intersectional experiences that comprise 'disability.' The "who are we?" question pervades the history of disability activism and scholarship: from the marginalization of women in the emerging UK disability movement in the 1970s; the challenging assertion from the Deaf community that "We are not disabled"; the positioning of people with mental health concerns, intellectual disabilities, chronic illnesses and/or people who choose not to identify proudly as disabled; and how to account for the experiences of racialization, queerness and other axes of identity,

With disability representing such a diverse array of experiences and identities, it seems unlikely that advocacy groups, as aspects of broader social movements, would be able to agree on specific positioning about concrete policy issues globally or even nationally. And yet, somehow, disability advocacy groups and individuals from disparate contexts do appear to take unified positions over the years, particularly in the policy realm. Groups and organizations of people with disabilities1 have made many dramatic requests for policy changes or demanded the implementation of existing legislation, such as the Rehabilitation Act (1973), the Americans with Disabilities Act (1990) in the US, the Charter of Rights and Freedoms (1982) and the Accessibility for Ontarians with Disabilities Act (2005) in Canada, the Disability Discrimination Act (1995, 2005) in the UK and the UN Convention on the Rights of People with Disabilities (ongoing) internationally. The policy demands and recommendations are founded on a liberal human rights model, and many of the specific policies draw on each other (e.g. the AODA is explicitly informed by the ADA). When disparate groups and individuals seem to coalesce into a coherent social movement around very particular and concrete issues, what are the implications for the broader movement 'identity'? Who is represented in these political demands and whose experiences are marginalized or unaccounted for? Is the collective identity represented through political action reproduced in the specific details of resulting policies and programs?

While some scholarship focuses on the regional differences in activist and academic approaches to disability (Campbell & Oliver, 1996; Chivers, 2007; DeJong, 1983; Longmore, 2003; Neufeldt, 2003; Peters, 2003), in this paper, I explore the implications for the broader movement identity when disability movements in the global North2 come together around a particular policy approach. Partially because of expanding disability studies programs which draw on international perspectives, international disability activism efforts, the ease of long-distance communication in our globalized society, and the relatively small number of people involved in disability politics, there are more and more examples of similar political demands coming from seemingly disparate regions. The 'disability movements' discussed in this paper refer to the voices and organizations publically making similar demands in regards to policy and program development. For example, a united voice from the United Kingdom, United States, Canada and many European countries calls for the implementation and expansion of direct funding models of care.3 Direct funding4 refers to disabled people (or representative organizations) receiving funds from local or national governments to hire and sometimes train the service provider of their choosing and to generally manage their own personal assistance. Direct funding has come to dominate personal assistance activism and this paper explores the ways in which the broader movement identity is shaped through this advocacy and the implications of this process.

First, I uncover the implicit identity underlying direct funding advocacy, and how mobilizing around this identity has lead to substantial success in terms of instituting direct funding programs in the global North. However, while mobilizing around a unified identity has been successful in some ways, the identity does not 'disappear' when the programs are actualized, leading to the exclusion and marginalization of many individuals from both specific programs and social movements. This has significant consequences for disability movements, how disability is defined and, at times, results in conservative political demands. This paper suggests that a 'collective of individuals' approach to conceptualizing and enacting social movements represented by Titchkosky (2003) and Do-It-Yourself feminism may hold potential for future disability activism.

Success from mobilizing around a unified identity

Many of the prominent figures of disability movements in the global North are white, educated, physically disabled men, a phenomenon that has not gone unnoticed in disability scholarship and 'on the ground' in disability activism (Humphrey, 1999; Vernon, 1999). Such leaders are often the 'voice' of political movements, and in some ways their embodied identities have come to symbolize the broader movement identity which has proven to be quite successful in terms of achieving specific advocacy goals like direct funding programs. Many of the central issues of disability movements in the global North reflect concerns of this particular voice, for instance one can easily locate examples of advocacy around accommodation in higher education and employment, independent living, and local transportation whereas examples of advocacy seeking support for disabled parents, promoting community/family models of care, demanding access to non-judgmental sexual support, addressing racism, sexism, homophobia and other forms of oppression within the disabled community and challenging discriminatory immigration policies in the global migratory system are less common, less organized and are not sustained over long periods of time. Indeed, the identity embodied by many of the leaders does not simply 'disappear' when activism is transformed into policies and programs.

Based on the principles of consumer control and a redefinition of independence in terms of self-determination (instead of physical action), Independent Living movements have become incredibly powerful and successful global phenomena. The oft-cited history of the American Independent Living movement focuses around Ed Roberts and the Rolling Quads in the early 1970s who obtained accessible, independent living arrangements in order to attend the University of California. Globally Independent Living movements continue to organize around independent living arrangements, and in many ways, the figure of the white, educated physically disabled man continues to undergird much of this activism. Direct funding is well suited to individuals who are comfortable with the administrative and interpersonal skills required to be an 'employer' (Barnes, 2007), which implies the 'best' candidates for direct funding are well educated, employed adults (not seniors) without children. Indeed, this group is the most likely to access these programs and in extension, to advocate for more or improved programs (Maglajlic, Brandon, & Given, 2000) resulting in the marginalization of other models of care, identities and alternative epistemologies. Wendell (2008) notes "the public heroes almost always appear to be strong, healthy, extroverted people who can live as independently as a non-disabled adult" (p.215). This figure influences who is considered a disability activist, who disability activism is intended to benefit and by extension, how disability is defined.

Specifically, Independent Living movements promote direct funding models of support and in many cases, programs have been instituted largely as a result of advocacy campaigns of people with disabilities (Yoshida, Willi, Parker, & Locker, 2004). There are currently nine Canadian provinces offering some form of direct funding, while in the UK in 2002 The Community Care (Direct Payments) Act made it mandatory for all Local Health Authorities to offer direct payment options to eligible individuals, and 22 American states participate in some form of this style of service delivery (Keigher, 2007). Thus, overall, there has been a dramatic increase in the use and implementation of direct funding programs, resulting in a deluge of research on many aspects of this approach to care (Askheim, 2005; Barnes, 2007; Ungerson & Yeandle, 2007). Many of the studies attempt to evaluate the programs along two related axes — whether users are satisfied with the programs and/or whether the programs succeed in empowering users based on indicators such as decision-based independence, choice, control, and increased social participation. This research overwhelmingly demonstrates that users in the United States and the United Kingdom are empowered by and satisfied with direct payments and consumer-directed care, particularly in comparison to other styles of service delivery (e.g. Askheim, 1999; Blyth & Gardner, 2007; Stainton & Boyce, 2004; Williams, et al., 2003 McBride, Snelham & Myers, 2003; Zarb & Nadash, 1994).There is no question that Independent Living in general and direct funding in particular can be incredibly liberating in that disabled people subsequently have more control, flexibility and freedom in their daily lives.

Why has advocacy around direct funding been so successful? The direct funding case and Independent Living may be an example of a social movement employing 'strategic essentialism'. Rather than asserting that individuals in a group have something fundamentally in common and thus they can act as a movement, strategic essentialism suggests that individuals can collectively perform a set of characteristics in order to further the goals of a social movement (Bernstein, 1997; Fawcett, 2000). Indeed, some might argue that a clear, unified position premised on Independent Living was essential in early deinstitutionalization advocacy and remains necessary in ongoing efforts to fully include and support people with disabilities in their communities. This line of argument dictates that movements must ignore complexities and work together around a shared identity, no matter how exclusionary it might be. This is the position publically endorsed during certain periods of UK disability activism in response to intersectional issues (Campbell & Oliver, 1996).

Yet, what are the costs of employing strategic essentialism in order to make focused political demands? While it may appear that the proliferation of direct funding can be counted as a momentous success for the disability movement, there are a few studies which attempt to problematize the positive outcomes, and the findings of these studies are lost when branches of the disability movement advocate for more direct funding programs without pausing to evaluate fully the current status and the broader implications for identity politics within the movement. Direct funding advocacy is so prevalent that Spandler (2004) comments on the reluctance of academics to critique the model and calls for valuable 'progressive' critiques that do not completely condemn it.

Indeed, it is important to explore complex issues that may complicate the movement identity and public positioning on particular issues, just as Tom Shakespeare (2006) does in Disability Rights and Wrongs. Shakespeare (2006) confronts key political positions associated with the UK disability movement and calls for more nuanced political stances on issues including: endorsing a social model and/or minority model approach to disability, encouraging individuals and groups to adopt an affirmative or 'disability pride' model of identity, strongly endorsing certain bioethical positions (i.e. opposing prenatal screening and euthanasia), an aversion to medical professionals and interventions, a strong belief in Independent Living philosophy, and a rejection of charitable approaches to disability. In many cases, the current positions do not leave room for ambiguity and intersectional identities, even though the issues at stake inevitably become more complex when other groups become involved (e.g. parents, politicians, medical professionals, etc.) and/or the collective knowledge around an issue deepens and expands over time. This is certainly the case with direct funding programs, which is rarely reflected in activism or policy formulation.

Beyond strategy: The implications of mobilizing around a unified identity

When social movements mobilize around a specific identity it goes beyond strategy since the identity does not disappear once the goals have been achieved. The identity promoted by disability movements through direct funding advocacy influences the way the programs are conceptualized and actualized. By framing direct funding with the concepts of choice, empowerment, individual autonomy, cost effectiveness and in terms of an employer/employee relationship, a certain definition of disability is implied and a representational figure of 'disabled person' emerges. Further, it is seen as a threat to disability movements to challenge the existing direct funding programs, as individual and collective identities may be intrinsically linked to this model of care which is enacted in deeply personal ways.

Polletta and Jasper (2001) note that while strategic essentialism has become a popular approach to understanding collective identity and avoiding the pitfalls of essentialism, there is evidence that groups, and the individuals who join them, develop certain 'tastes' for political tactics. That is, groups may have essential strategies that they choose to employ even when another approach might be more affordable, less work, or faster. The strategies are 'essential' in that if a group were to change its approach suddenly, for instance from a radical to a traditional approach, many individual members would no longer identify with the group. One could clearly imagine this scenario if, for example, the US organization ADAPT were to suddenly completely reject the idea of Independent Living. The concept of strategic essentialism is therefore limited in explaining how collective action works, and strategy alone does not justify the broader implications of mobilizing around a specific identity.

Critiques of the social model are another example of how promoting a specific identity in political mobilizing has concrete implications. Particularly in the UK, the social model of disability is used as an organizing philosophy underlying disability activism. Scott-Hill (2004) describes how the Union of Physically Impaired Against Segregation's (UPIAS, an activist group) version of the social model has become what she terms a 'new orthodoxy' in disability research in the UK. The concept of a 'new orthodoxy' is somewhat perplexing in the larger academic context where disability studies perspectives remain marginal, yet employing such strong language forces the reader to engage in critical reflection of the field. As an alternative, Scott-Hill proposes a postmodern, communicative paradigm which "takes the view that social relations between people are notoriously messy and complex" (Scott-Hill, 2004, p.163). Scott-Hill (2004) is aware of the potential responses to the communicative approach:

Any attempt to gain critical enlightenment on [the UPIAS social model] tends to be interpreted by 'orthodox' social modellists as threatening the unity of disabled people's political campaigns, and accused of promoting a relativistic world in which the 'fact' or 'reality' of disability can no longer be assured. (p.169, emphasis added).

Scott-Hill and others who critique the social model are essential for the advancement of both the academic field and disability activism. Despite an array of academic critiques which draw attention to the limitations of the social model for theorizing diverse experiences of disability, a strong connection remains between the social model and the political disability movement in the UK. The UPIAS social model becomes a litmus test for measuring the relevance of research, programs, individuals and organizations to disability movements. A simple, 'tidy' disability identity as inferred by the social model is not a necessary pre-condition for political progress, and, in fact, employing a simple identity has implications for who is and is not included in social movements and a beneficiary of advocacy outcomes.

In the example of direct funding, there are a few critical studies which highlight the ways in which the programs resulting from advocacy campaigns are not created with a range of identities in mind. For instance, some studies find substantial inconsistencies in how the programs are implemented across different regions or countries, and such variation significantly alters whether or not a program is 'empowering' or 'satisfying' (Askheim, 2005; Barnes, 2007; Kestenbaum, 1996; Ungerson, 2004). That is to say, the findings of these studies contradict the common advocacy strategy of suggesting the implementation of direct funding will automatically result in an increase in empowerment/satisfaction levels of disabled people (e.g. ADAPT, 2009), and raises the question, empowering for whom? Some feminist authors critique independence as a societal value and suggest this is not an appropriate or desirable goal for many individuals (Hillyer, 1993; Hughes, et al., 2005; Kittay, 2002; Watson, et al., 2004). As such, using independence as a criterion for evaluating the success of these programs infers certain people with certain impairments are the intended beneficiaries of direct funding.

Some studies of direct funding pick up on this inference and discuss whether the programs are appropriate for all groups of people. There are studies that examine direct funding from the perspective of people with intellectual disabilities (Caldwell, 2007; Caldwell & Heller, 2003; Williams, et al., 2003), mental health service users (Lord, Zupko, & Hutchison, 2000), children with disabilities (Blyth & Gardner, 2007) and elderly people (Clark & Spafford, 2001; Tilly, Weiner, & Cueller, 2000), while Maglajlic, Brandon and Given (2000) focus their study on multiple groups with distinct needs and briefly touch on the more complex issues of multiple disabilities, ethnicity and religion. Yet trying to find solutions to make direct funding 'work' for different groups does not question the ways in which both Independent Living and direct funding implicitly position rational, independent decision-making as the ultimate 'ability.' In short, the issues raised by direct funding programs are much more complicated and even chaotic than the simple message and the public consumer identity endorsed by disability advocates, and these complexities are lost 'on the ground' when advocating for more programs.

Shakespeare's call for more nuanced political positioning and Scott-Hill's communicative approach both make room for ambivalence/ambiguity in disability activism and writing. Allowing for ambivalence around certain topics also comes up in feminist disability writing, for instance, Wendell (1996) speaks about finding a cure and what this would mean to her, Clare (1999) writes about sexuality and identity and Fawcett (2000) questions the value of rights-based, unified social movements. Ambivalence and ambiguity may be more accurate descriptions of how many people with disabilities think about various political issues and if and when they choose to identify as 'disabled activists' particularly when the identity promoted through direct funding advocacy is such a specific one. The problems with the programs are not merely 'bugs' to be ironed out, but signify broader issues within the disability movement. Direct funding and Independent Living are often regarded as key issues and excluding individuals from direct funding advocacy and from the programs has significant social and cultural ramifications.

Pulling the thread: Unraveling direct funding, identity and activism

In many ways, current advocacy around direct funding is characteristic of other policy or program-focused advocacy campaigns in the global North in that it is led by and primarily benefits educated people with physical disabilities. This bias in the movements and policies has significant consequences. For one, the narrow identity leads to difficulty in establishing alliances with other social movements. Further, many people with disabilities do not identify with the political movement because they do not relate to the identity inferred through advocacy efforts. More abstractly, these efforts implicitly define disability as 'functional limitation' rather than more emancipatory definitions imagined by disability scholars and sometimes indirectly reinforce hegemonic power structures, in the case of direct funding, the neoliberal policy agenda.

Current advocacy around direct funding leaves little room for forming alliances with attendants. Some of the academic literature on direct funding considers the position of attendants within these systems, a perspective rarely or marginally considered in disability activism around direct funding (Earle, 1999; Helgoy, Ravneberg, & Solvang, 2003; Hughes, et al., 2005; Spandler, 2004; The Roeher Institute, 1993; Ungerson, 1997, 1999, 2004; Watson, et al., 2004; Yamaki & Yamazaki, 2004). This literature considers the impact of direct funding on attendants and discusses how people with disabilities relate to the attendants, which is much more ambiguous than the simple employee/employer roles constructed in disability advocate groups (e.g. Independent Living Canada, 2009; National Centre for Independent Living, 2009). Indeed, Ungerson (1999) describes personal support relationships under direct funding as "a hybrid form of work and care" (p.583). Some authors critique direct funding for empowering people with disabilities on the "backs" of attendants, who often end up working in low paying, under-valued, and under protected environments.

In Ontario, Canada, some attendants working under a consumer-directed agency model of care (not direct funding in this case) are in the unusual situation of having a union to represent their needs. The existence of this union remains a highly contested issue as in many ways it pits the attendants against the disabled people accessing the services. This tension reached a pinnacle when the union launched a strike against the employer in 2001. It is important to note that the employer in this case is a government-funded non-profit agency, not, contrary to advocacy messages, the disabled people (Cranford, 2005). The striking union was initially met with strong resistance from the disability activist community (Cranford, 2005). Instead of supporting one another and working together to attain better wages for the attendants, an 'us' against 'them' mentality ensued. Cranford (2005) observes that the attendants and the disabled people were eventually able to sort out these tensions and support one another during the agency strike, but concludes that the attendants under direct funding face considerable barriers to organizing in the current system. Rosemarie Garland-Thomson (2002) positions disability as pervasive cultural category, as such advocacy around direct funding must expand in ways that understand personal assistance as 'disabled work', that is, work that is inherently devalued in our society, just as disabled bodies are. One of the ways to transform the cultural meanings of disability is to improve the social status of attendants and the value attributed to their work. There is incredible potential for disabled people to work alongside attendants for the improvement of direct funding programs, but this would require a broadening of identities and mandates endorsed by advocacy groups.

In addition to the difficultly bridging with other social movements, direct funding advocacy contributes to the widespread reluctance of people with disabilities to identify with political movements or even proudly as 'disabled'. Shakespeare & Watson (2002) note that a mass mobilization of disabled people has yet to coalesce, suggesting that many people with disabilities do not identify with disability movements. The relevance of an affirmative or 'disability pride' model of identification, which is often a part of disability movement activities, is also being challenged. Darling (2003) shows that there are a variety of ways to identify as being disabled, and only one of them is the 'affirmative' model. Similarly, Watson's study (2002) found that many young disabled people do not want to be seen as disabled, but rather identify as a "normal" person who happens to have an impairment among many other personal attributes. It is clear that to varying degrees, most activists and academics do not believe a simple group identity is an accurate representation of all experiences of disability, and yet, such an identity retains currency in much of political activism around disability issues.

The ADAPT approach in the United States represents one of the more sophisticated responses to Independent Living, yet also constructs a specific identity which discourages many individuals from relating to the movement. ADAPT includes some consideration for "living wage and benefits" for attendants as well as of different impairment groups as there is an allowance for an individual representative to aid "consumers who are not able to direct their own care independently" (ADAPT, 2009). Yet, there is no option for lifestyles based on values other than independence which, as Kittay (1999) argues, indirectly positions some people for whom complete independence is not ever possible as "less than fully human" (p.173). Reinforcing independence as the ultimate social value is also a political act that maintains the status quo, a status quo where "those who are in positions of power and privilege can continue to ignore and to degrade the activities of care and those who give care" (Tronto, 1993, p. 111).

Further, in the "Talking Points" posted on ADAPT's website, the approach unabashedly draws on neoconservative family values. It says it is important to "keep families together" because according to ADAPT (2009), "children belong in families; grandparents belong at home; Mom and dad belong together with the kids and communities take care of their own." These points plainly and simply support a heteronormative, nuclear family model thus marginalizing many other experiences which do not fit this mold. Identities are complex and manifest in deeply intersectional ways (Asch, 2000; Clare, 1999; Schriempf, 2001; Wendell, 1996). Incorporating deep intersectionality is essential for activist groups who claim to represent the myriad of identities that constitute disability. Current activism around direct funding is evolving, but seemingly only in ways that maintain the underlying Independent Living philosophy and simple group identity.

The voice of the movement in the public realm is often literally or figuratively a white, physically disabled professional man, thus marginalizing many other experiences of disability and limiting the potential for who identifies with the movement. In addition to this particular identity presumed by direct funding advocacy and programs, there are implications for how disability is defined. Direct funding advocacy often emphasizes that personal assistance is an effective and viable option for mediating disability, thus implying that disability is merely a functional limitation that is easily alleviated. In contrast, feminist disability theory suggests disability is a pervasive cultural category rather than a minority identity. Garland-Thomson (2002) transforms the concept of disability; instead of the common understanding of disability as a readily observable medical 'fact' or even the less common social model understanding that often ignores bodily experiences, she establishes disability as complex and layered cultural category that can be used to theorize and understand the social body. Garland-Thomson (2001) argues her approach to disability calls for a "different kind of activism from demonstrations or marches" (p.18), which may be debated. However, her approach may call for different, messier political identities tied to the movement, which can be enacted with a variety of tactics.

It is also noteworthy that the 'consumer' identity complete with notions of choice, independence and control promoted by Independent Living movements through direct funding advocacy happens to fit within the broader socio-economic trend of neoliberalism, which in turn 'happens' to notoriously cut funds in ways that disproportionately affect social movements (Grundy & Smith, 2005) and populations that access government supports and services, including people with disabilities. Jenson and Phillips (1996) suggest citizenship regimes are accompanied with new criteria for who constitutes a 'model citizen.' Under the neoliberal regime, service-providing groups are given priority over advocacy groups, thus forcing non-profit groups to (re)orient almost exclusively around service provision and fracturing citizen-groups into individuals who must fend for themselves and avoid becoming a 'drain' on the state. Under direct funding, disabled consumers and in many cases, affiliated non-profit groups, take over the role the state once held and the overall costs of service delivery are reduced; the cost-saving aspect of this program is heavily drawn on in public advocacy while the ways in which personal assistance is transformed into a job without benefits, full-time hours or the protection of a regulatory agency is overlooked. Direct funding is a clear example of the goals of social movements fitting into a neoliberal policy agenda, thus demonstrating that neoliberalism is not a top-down policy framework, but a complex phenomenon that manifests not only 'on' social movements but in and through them (Larner, 2000). If direct funding is to remain a core advocacy issue for disability movements, it is essential that the images of disability and disabled people created through this advocacy work evolve into more complex and inclusive forms and the political demands must evolve to challenge oppressive policy regimes.

Mobilizing a 'collective of individuals'

It is possible that if direct funding advocacy were to evolve in ways that allow for complexity and ambiguity, the public messages would change so radically that the current advocacy community would no longer consider it disability activism. Perhaps efforts to maintain the established Independent Living model used to justify the program are also efforts to maintain the movement identity so intrinsically linked to this position. More complicated identities analysis and deployment could yield more complex and responsive direct funding programs, resulting in both improved services and a stronger movement. But what does a more complicated identities analysis look like, and how can it be employed in practical ways?

In addition to the strategic essentialism approach discussed earlier, there is another common response to the postmodern challenge to group identity, that is, to focus on individual, fluid identities. Liggett (1988) is an example of this approach. Drawing on Foucault, he critiques the minority model of group politics; he argues that disabled people participate in the 'administration' of the category of disability by engaging in group politics which requires a clear distinction between disabled and non-disabled (Liggett, 1988). For Liggett, protest must take place on an individual level, in small everyday resistances against normalcy. Indeed, this type of activism is necessary and urgent, and yet, it is difficult to imagine that such a strategy would have brought about Independent Living as it exists today as quickly as the more traditional approach did.

A few voices in identity and social movement scholarship take an alternative approach by arguing that identities still matter (Alcoff, 2006; Hall & DuGay, 1996; Jenkins, 2004; Stavro, 2007; Zack, 2005). The authors do not ignore the problem of essentialism, but attempt to deal with it without completely doing away with collective identity. This approach can be understood as a "collective of individuals". That is, a loose grouping of individual subjectivities, who will often disagree. In practice, a collective of individuals does not necessarily need to be complicated as demonstrated by the casual approach of third wave, Do-It-Yourself (DIY) feminism, perhaps the clearest example of this approach to group identity. In this model, identities are understood as both socially constructed and as experiences to be shared, thus the contemporary paradox of group identity is not seen as an impediment to activism and theory but is embraced.

From a disability perspective, Tanya Titchkosky's Disability, Self and Society can be considered an example of this approach to understanding collective identity. That is, while acknowledging the problem of essentialism, she does not completely abandon the concept of collective identity. Throughout her book, Titchkosky (2003) is careful to dismantle the dis/abled dichotomy and prove that individual experiences of disability matter and can teach us about the broader culture. The dismantling of dis/ability is significant as it shows that disability is an arbitrary and shifting category and it is the cultural reactions to this category which truly 'disable' people. For most of the book, it appears as though she is attempting to do away with the concept of collective identity, for if the category of 'disability' is arbitrary, then the idea that there are shared aspects to belonging to this category is also arbitrary. Yet, towards the end, she reaches a turning point. In order to examine cultural assumptions about disability, Titchkosky flips the notion of 'passing' by acting as a blind person for ten days in Toronto. Throughout her research, Titchkosky learns much about the individual, fluid experience of living as a blind person and the cultural reactions to blind people. When she is flying home to Nova Scotia, she finds herself sitting near an elderly woman who is losing her vision. The woman chats with Titchkosky, reaching out for shared experiences and understanding. Titchkosky tells the woman she is not blind. It is at this point that Titchkosky realizes she will never try to pass as a blind person, or a person with any other impairment, again. She describes: "I sat still, struck by an extreme sense of my fraudulence, combined with sadness at a broken connection, and disappointment in myself for ever passing as blind" (p. 205).

Although Titchkosky reveals the dis/abled dichotomy is false and therefore one should be able to fluidly shift from one identity to another, she finds there is a 'real' lived experience of being blind which she must not co-opt. Jenkins (2004) eloquently sums up this scenario: "The internal and the external dance together in the unfolding of individual and collective identities. And although those identities are imagined, they are not imaginary" (p. 183). Titchkosky's (2003) book is a strong example of an identity scholar deconstructing identities while also realizing that they remain relevant.

The collective of individuals holds potential for social activism in current era, and it is possible for such an approach come to life in the political realm. Many activists working in non-traditional advocacy venues already utilize creative tactics for social change, particularly around meaning making. Feminist movements continue to grapple with identity issues regarding the category of "woman" (Howie & Tauchert, 2004) and the current Third Wave women's movement DIY branch responds with a collective of individuals. DIY feminists attempt to acknowledge that most people hold more than one identity and as such, they often pursue diverse activism goals and align themselves with multiple movements. No identities are excluded from DIY feminism, with the exception of people who perpetuate the oppression of other people in their writing or actions. Many individuals previously excluded in feminist activism feel more comfortable in the third wave. DIY feminists are not afraid to disagree and valorize individual subjectivity most notably through humor, word play and maintaining blogs which explore their personal views on feminist issues (Mitchell & Karaian, 2005; Pinterics, 2001). In the spirit of intersectionality, there are recent examples of DIY disability feminism, in particular the Feminists with disabilities for a way forward group blog (FWD/Forward, 2009).

Similarly, in some ways the disability arts community may also represent a collective of individuals. Unlike DIY feminism however, disability arts movements still maintain some identity boundaries by relegating nondisabled people to the margins where they sometimes participate as supporting performers, organizers and most often spectators. Overall, arts movements maintain some form of disability identity and suggest that this identity is 'real' but also constructed. They acknowledge that individuals can share experiences of disability while also expressing highly individual (and perhaps conflicting) interpretations of these experiences.

It is time for political disability movements to harness the creativity, complexity and ambiguity of the collective of individuals approach in traditional advocacy tactics, particularly around direct funding. This does not mean abandoning direct funding completely or Independent Living in general, but rather expanding advocacy requests and goals. Movements could advocate for other interdependent, community models of care alongside models that privilege the value of independence, advocate with attendants around workers rights, and strive to eliminate all forms of oppression that both disabled people and care workers may encounter in personal assistant scenarios. Contrary to the assumption that diversity and complexity will divide the movement, I believe that like DIY feminism, it will allow for more disabled people to relate to and identify with the movement, and contribute to improving the daily lives of disabled people in concrete ways.

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Endnotes

  1. Many authors explore and debate questions of language and definitions in their work on disability (e.g. Hillyer, 1999; Shakespeare, 2006; Titchkosky, 2003). Most of these discussions explore to what extent disability is socially constructed, the power of naming, and if disability is central or marginal to one's personal identity and experiences. As such, since there is clearly no consensus either regionally, within the movement, or within academia on what terms are the most 'accurate' representation, I will use both of the most widely accepted terms, that is "people with disabilities" and "disabled people." This ambiguity is important to the main argument, as I will demonstrate it is not always necessary to clearly support one 'side' over another.


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  2. The focus on the global North is not to deny the existence and significance of the global disability movement (Charlton, 1998; Chouinard, 1999; Driedger, 1989), but is only because material and ideological issues in the South have led to more diverse political demands than those found amongst developed countries.


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  3. There is an emerging trend to reconsider the standard disability studies/activist position on 'care' as a term and a concept (e.g. Beckett, 2007; Gibson, Brooks, DeMatteo, & King, 2009; Hughes, McKie, Hopkins, & Watson, 2005; Kroger, 2009; Shakespeare, 2006; Watson, McKie, Hughes, Hopkins, & Gregory, 2004). I am electing to include the term care in my work as part of this shift.


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  4. This type of program is also referred to as self-managed care, individualized funding and broadly as consumer or client-directed support.


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Copyright (c) 2010 Christine Kelly



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