Care is not always readily embraced by disabled people whose lives have been shaped and informed by individual experiences and collective histories of institutionalization, medicalization, and other practices that remove or limit the agency of disabled people to make decisions about their everyday lives and bodies. Disabled people within Independent Living (IL) movements and disability activism proclaim "We do not need care" despite the ways in which care is "a foundational orientation and pivotal goal of many health and social science fields and policy discussions" as well as "a motivating force" for many of those who do "care" work (Kelly 2016, 5). And yet, as Christine Kelly aptly points to in her book, Disability Politics and Care: The Challenge of Direct Funding, "Disability movements do not intend to eliminate the provision of daily physical assistance, so which meaning and practices of care are rejected in this sentiment?" (5).
Elegantly written and bringing together critical scholarship in disability and feminist studies, as well as engaging policy and drawing on substantial ethnographic research delving into the personal experiences of disabled people and attendants, Disability Politics and Care is a must read for anyone interested in the politics of giving and receiving personal support. Kelly adeptly shows the tensions and contestations that arise through the practices and conceptualizations of care, particularly charting what it means "to incorporate a rejection of care into the core of theorizing, research practices, and policies of care" (5). The central objective of her book documents "contemporary practices and conceptualizations of care within a program that explicitly rejects it: Ontario's Direct Funding Program [ODFP]" (5). Importantly, Kelly's Canadian-based case study of the practices and discourses of care within the ODFP has implications that extend far beyond the Canadian context. While Kelly's book highlights the strengths of the ODFP and makes recommendations for improvements, her primary aim is to "enter into theoretical discussions of care" (9), specifically taking up "the debates and conversations between feminist care researchers and disability perspectives" exploring "the broader policy and movement effects of these discussions" (9).
As a case study, the ODFP "can be interpreted as the quintessential manifestation of the Independent Living movement" (11), a movement that builds on the 1970s legacy of Ed Roberts and the Rolling Quads in Berkeley, California. The IL philosophy emphasises the social value of disability, consumer control and rights, and defines independence in terms of decision making, a value that has become central to many direct-funding programs all over the world (11). In addition to this context, the ODFP also arises out of the deinstitutionalization movements from the 1950s onwards which "highlight the often deplorable living conditions in segregated residences, as well as the cultural messages about disability conveyed through social isolation, medicalization, lack of choice, routinization of life, and inhumane treatment" (10) and "demands that people with disabilities live in community settings" (10). Direct funding is one mechanism to facilitate disabled people living independently in community settings and has been greatly informed by this activist history.
In Ontario, the ODFP is administered by a non-profit organization affiliated with IL. The ODFP provides "public funds to disabled people, nonprofit organizations, and, in some cases, family members or guardians to hire individuals to provide assistance with daily needs" (7). Through the ODFP, disabled people become the employers of attendants, providing flexibility, empowerment, and user control. In contrast to caring professionals who make decisions on behalf of service users, through ODFP disabled people direct the actions of attendants, marking this program as "different from other forms of home care; it is so distinct, that it is not care" (65).
The ODFP draws on IL's vibrant transnational history that includes rejecting caring approaches to disability so as to revise "common definitions of independence" despite maintaining it as "an important, if not paramount, social value" (39). IL models of attendant services frequently remove language around care and instead utilize terms such as "self-manager" "consumer" "attendant" or "personal assistant" (7).
Kelly's book reports on fifty-four qualitative, in-depth interviews with disabled people, attendants, informal supports, and key informants from various parts of ODFP, ultimately finding that "direct funding mechanisms and the connections to disability movements rhetorically remove care but do not eliminate it" (6). Instead "care is moved and contained to specific meanings, transforming our understandings and practices in the process" (6). Thus, through careful analysis, Kelly's book suggests that it is not that "we do not need care" but rather that we need to transform the oppressive aspects of care that continue to impede socially just ways of providing personal support for disabled people. This includes revaluing the labour of care so as to alter the gendered, racialized, and precarious labouring conditions of care work. Kelly terms this "moving care," noting the importance of highlighting and changing the oppressive aspects of care "without denying that care must still take place at times, and has transformative potential" (114). Kelly thus expresses that "Moving care contains its meanings and facilitates this critical and essential process" (115).
Through the text Kelly marks not only the ways in which disabled people may be oppressed by care but also draws attention to the inequitable and oppressive conditions that often accompany working as an attendant. Kelly draws on feminist scholarship to position care as a transnational gendered and racialized form of labour that often involves the physical migration of female workers to care-fields that are precarious and undervalued (29) while also pointing to the tension within disability scholarship and activism that emphasises care as "a layered form of oppression that includes abuse, coercion, a history of physical and metaphorical institutionalization, and a denial of agency" (29). IL, in emphasizing the autonomy and "agency of the recipient of support in care dynamics" (30) does not adequately engage with the inequities of care work as transnational (42). Kelly traces the ways in which attendant work "can be physically and emotionally demanding, with no employment benefits, particularly no sick days. The issue of attendants missing work, though a serious and important concern, also highlights problematic working conditions that accompany this model of support" (98). Thus Kelly concludes: "Care can be an abusive interaction between individuals rooted in specific power dynamics, an institutionalized approach to disability, and an unjust social organization that systematically disadvantages and devalues women by coercing us to provide formal and informal care" (35).
Kelly also critically engages the ways in which IL and direct funding programs emphasize autonomous and rational decision making "which can be exclusionary towards people who need assistance to make decisions or who do not use verbal communication" (39-40), drawing out some of the tensions that exist between how care comes to be rejected by many physically disabled people but promoted as a necessity for intellectually disabled people. Kelly finds that her "study revealed a derision of people with intellectual disabilities and a valorization of rationality and independence" (111). This leads Kelly to suggest that disabled people "should not be barred from experiences of self-determination, independence, and autonomy; at the same time, independence is not the sole indicator of personhood and success to which some people have access and others do not" (40). As Kelly astutely points out:
saying that 'care' applies to people with intellectual disabilities does not mean that abuse or institutionalization is condoned, but rather acknowledges that there are instances where someone, perhaps a care professional or family member, must speak on behalf of someone who cannot always do so, at least not in conventional ways (116).
Taking Kelly's point seriously requires both engaging and transforming care.
One of the strongest contributions of the book comes through Kelly's willingness to shift through the various tensions embedded within practices and discourse of care, noting that care both "encompasses too much and not enough to describe what is happening under Direct Funding" (66). While direct funding approaches tend to promote an employer-employee relationship that is contractual, unemotional, and instrumental, Kelly presents compelling evidence marking the disabled-attendant relationship as situated within multiple power dynamics that involve informal, emotional, and relational work. For example, while informally helping a male friend use the toilet Kelly reflects: "These moments are awkward because they make us acutely aware of the layered power dynamics inherent in our female/male, disabled/nondisabled, and clothed/unclothed embodiments that we more typically prefer to ignore, since it brings the abusive potential of care uncomfortably close to the surface" (38). Attendants play multiple roles including being the "arms and legs" of a disabled person as well as emotional and relational workers (66). Here, Kelly brings together disability scholarship and feminist care scholarship to explore care "as a combination of physical assistance, emotional empathy, and compassion" (74), concluding that "it is the combination of accepting the 'arms and legs' role and the relational work that makes for good attendant services" (75). Kelly thus finds in her interviews with attendants that they are not simply "assistive devices" as "many features of attendant work cannot be automated, even in metaphoric sense, namely the mandatory relational work" (75). However, such relational work is not just done by the attendant. Kelly comments:
For the self-managers, the relational work includes making attendants feel at ease and appreciated, building rapport in order to instill a sense of responsibility when outside the work environment, and maintain awareness of potential forms of abuse and the legacies of institutionalization. The self-managers' relational work builds on critiques of care by asserting agency through directing their attendants, being vigilant against potentially dangerous and abusive situations, and trying to preserve a home environment that is not institutionalized (89-90).
Kelly also points to the ways in which relational work facilitates the gaps left by the inadequate amount of funding available to cover all aspects services required in a day, noting that cultivating "caring or emotional attachments can be drawn upon to compensate for a shortage in hours or to prevent experiences of vulnerability" (123). For example, cultivating care or emotional attachments allows for more informal care, such as having an attendant stay longer than their pay period to finish helping someone eat dinner, or come into work when it is not their shift if another attendant doesn't show up. In these situations, "excluding the concept of care from public rhetoric of the Direct Funding Program obscures this strategy to some extent" (123).
Elsewhere I have called this a kind of "relational assemblage" noting that for disabled people utilizing attendant services, the emphasis should be "not on what you can do for me but rather what we can create together" (Fritsch 2010, 11). Along these lines, Kelly comments:
Care does not encompass enough to describe the complexity of the two-way relational work, and yet it encompasses too much to describe the tasks. Philosophically, these two descriptions simultaneously reinforce and break down distinctions between the autonomous self and the interpedently intertwined selves […] attendants are not body parts; the physicality, intimacy, and isolation of attendant work under Direct Funding demand and create new ways of relating and interpreting the boundaries of the self (83).
Kelly finds promise in work that acknowledges that personal assistance is not simply contractual, unemotional, or instrumental, but rather bridges independence-interdependence and makes room for both/and instead of either/or positions and frameworks (33). Kelly argues for accessible care, where access, drawing on the work of Tanya Titchkosky is "an interpretative relation between bodies" (quoted in Kelly, 34). For Kelly, accessible care "is grounded in the daily, intersectional experiences of support provision" (37), but accessible care does "not resolve, or aim to resolve, the contradictions posed by contemporary forms of care […] it is essential to have a layered definition of care that includes the notion that care can be a form of oppression as well as a critical approach to accessibility that moves beyond 'solutions'" (43). As such, "care/not care, are not in competition but flash in and out of prominence depending on the circumstance, relationship, life stage, and individual" (114).
Dedicated to "all the disability activists, artists, and scholars who make it possible to imagine and live disability differently," Kelly's Disability Politics and Care: The Challenge of Direct Funding demonstrates the importance of pausing to sit within the tensions of care so as to assess, challenge, and critically inform the very practices and strategies we take to imagine and live disability differently. Through this carefully argued text, Kelly effectively urges disability and feminist scholars and activists to transform the ways we give and receive care.
- Fritsch, Kelly. 2010. "Intimate Assemblages: Disability, Intercorporeality, and the Labour of Attendant Care." Critical Disability Discourse 2: 1–14.