This research was funded by the Robert Wood Johnson Foundation Scholars in Health Policy Research Program. I thank the scholars in Cohorts 8 and 9, especially Pam Herd and Steven Lopez, for their comments and contributions to my thinking. A previous version of this paper was presented at the annual meetings of the Western States Sociological Association.
"I tried to take the bus yesterday. I waited 30 minutes and finally the bus came. The driver told me I couldn't take it because the lift didn't work. I waited another 15 minutes, but no bus came. I am going to complain! The last couple of days was my opportunity to understand the real deal! Yesterday a friend pushed me down to the store. They had garbage bags marked two for a dollar. When I went to the counter they told me it was different bags. I pointed it out but they wouldn't give me the bags. So I told them, 'You trying to get away with something and why? Because I'm a person in a chair?' I said, 'I tell you what — I'm not gonna pay for shit!'"
Martha had spent 15-18 hours of each week over the previous two months discussing independent living with a cross-disability group of "consumers" at Lake Center for Independent Living ("Lake CIL") in the fall of 2002.1 She had entered the independent living program seeking to meet others with "handicaps" (her words). It had been three years since her stroke, yet Martha claimed to only now understand the "real deal" of disability. In the statement above, she pointed to the environmental barriers of non-functioning public bus lifts and the attitudinal barriers she perceived when the grocery store clerk wouldn't honor an advertised bargain. More importantly, she began to take action as a disabled person, demanding that her rights be protected. How did the Center for Independent Living (CIL) transform Martha from a woman who saw herself as handicapped to a woman with an affirmative disability identity? What happened during her time at this CIL to bring her to this moment of individual disability activism?
I did not being this research with an inquiry about disability identity and Disability Rights Movement (DRM) recruitment strategies. I began studying the CIL to investigate the processes by which it prepared disability community members to demand independent living. In the 30 years since their founding, CILs had become crucial resources for disabled people. Yet there was little research on their activities, processes, successes or failures. I found, however, that this research question presumed too much. Thirty years after the beginnings of the DRM, the consumers who sought help from the CIL had little or no understanding of independent living, disability identity or the disability rights movement. CIL staff told me that their consumers were not yet ready to seek independent living. In response, they worked to create disability identities and recruit disability activists. These two results were considered essential to the demands and realization of independent living. This paper explains this process, using Burawoy's (1998) extended case method to link micro-processes of identity construction to empirical work on the DRM and our theoretical understanding of social movement recruitment processes.
To date, there has been little scholarly work on the DRM (cf. Barnartt & Scotch, 2001; Fagan & Lee, 1997; Shakespeare, 1993). While the DRM seems to share many aspects of other identity-based movements, and arose during the same period as other post-Civil Rights Movement movements, it has some unique problems in recruiting potential movement adherents (Barnartt & Scotch, 2001). People with disabilities are an extraordinarily heterogeneous group, spread geographically among the general population. There has been no organized constituency of disabled voters comparable to groups formed by the elderly, women, and racial/ethnic minorities in the U.S. (Hahn, 1985). While almost 20% of American citizens claim a disability or work-impairment, those who actively identify with a "disability community" represent a tiny number (Barnartt, Schriner, & Scotch, 2001). Some disabled people have participated in political activity during the past four decades, facilitated by the development of institutions and spaces like the more than 300 Centers for Independent Living, or "CIL's," (Barnartt & Scotch, 2001), but we know very little about recruitment processes within these organizations. This paper adds to our empirical understanding of these important disability rights micro-organizations.
In addition, I expand our understanding of the processes of social movement recruitment. I argue that part of claiming a collective identity and engagement in collective action, is an action I call identity deployment, following Bernstein (1997), which brings individuals to a sense of personal efficacy. Identity deployment, according to Bernstein (1997) is the expression of identity in a way that makes the individual person the "terrain of conflict." While Bernstein focused her analysis on deployment of identity by social movement groups, she noted that individuals can engage in collective identity deployment as well. An individual deploys a collective identity when she challenges the dominant culture's values, categories and practices or perceptions of a minority group (Id., 537). It is not yet social movement activism because the person takes the action in an individual context. Nonetheless, for the activists in this CIL, encouragement to individual identity deployment was a crucial step in the creation of disability rights activists.
In the social movement literature, efficacy is usually viewed in terms of a feeling that collective action will lead to social change. The focus is on encouragement to participate in group actions and strategies. This research focuses on another aspect of efficacy in social movement recruitment. The disability rights activists working at this CIL endeavored to transform potential movement adherents from relatively passive individuals who accepted their treatment as a usual part of the disability experience into assertive individuals who would deploy a collective disability identity in individual interactions in ways that challenged dominant views of disability. In essence, they hoped that CIL clients would become activists in daily life, as well as in collective activity, using their disability identity to transform the world.
The Disability Rights Movement and Collective Identity
The term "identity politics" was first used to describe collective action by the disabled (Anspach, 1979). Disability Rights Movement (DRM) activists challenged cultural perceptions of disability, struggled against medical and state control over the lives of the disabled, fought segregation in schools, transportation, work and housing, demanded autonomy and choice in life decisions, and sought civil rights protections (Fleischer & Zames, 2001; Shakespeare, 1993). Movement participants consciously drew from the theory and practice of other identity-based movements, including the Civil Rights Movement and the women's movement, as they developed strategies (Shapiro, 1993) and analogized their situation to that of African-Americans (Barnartt and Scotch, 2001). Like actors in these movements, disability rights activists engaged in direct action, challenging state power through demonstrations, sit-ins and marches. These activities, Shakespeare (1993) argued, were especially salient for disabled persons because they directly challenged a dominant stereotype of the disabled as passive and incapable (see also Scotch, 1988).
The contemporary DRM and its corollary Independent Living Movement ("ILM") began in the 1970's2 and sought acknowledgement of the needs of disabled persons, the right of disabled persons to lead their own movements for social change and make decisions about their own lives, and a redefinition or reframing of disability from a medical model to a social/minority model (Shakespeare & Watson, 2001). The medical model of disability defines disability as a chronic pathology or impairment linked to functional limitations. It is seen as an individual problem that requires a medical cure, rehabilitation, and/or compensation and assistance. In contrast, the social model of disability defines disability as a social construction in which disability results from the interaction of impairment and the social, political, spatial, architectural and cultural environment. It is a collective problem that requires collective political action (Scotch, 1988; Shakespeare, 1993).
The DRM and ILM accomplished a number of objectives, including the establishment of CILs nationwide and the passage of a major civil rights law, the Americans with Disabilities Act. Many aspects of the movement have been institutionalized into federal and state agencies and law. Nevertheless, major challenges to equality and full social integration remain. Disabled people still experience disproportionate levels of unemployment and poverty (Houtenville & Adler, 2001) and have been generally unable to win employment discrimination lawsuits (Bruyere, 2000; Coker, 1999). Cultural images suggesting that they are "better off dead" are still seen in award winning films like Million Dollar Baby. People with disabilities struggle to get personal and financial assistance to live in their own homes rather than in institutions. The Supreme Court is steadily cutting back on the rights promised under the Americans with Disabilities Act of 1990 (Krieger, 2003). 3 There remains a need for ongoing disability activism. In addition, while there is evidence that some middle-class disabled persons have come to see themselves as "rights-bearing" citizens (Engel & Munger, 2003), disability remains concentrated among the least powerful members of American society (Houtenville & Adler, 2001; Scotch, 1988). These are the individuals recruited into disability activism by Lake CIL. Because most disabled people are not socialized into a disability identity by families and communities, the DRM must continually mobilize new social movement participants.
Some clarification is required here. Since the 1970s, disabled activists have pursued two sets of claims, generally described as claims for civil rights and claims for independent living, in what is described as two movements, the Disability Rights Movement and the Independent Living Movement (Barnartt & Scotch, 2001). Some activists participated in both kinds of collective political action, although we don't have clear data on the amount of movement crossover. However, some analysts argue that these two "movements" were two sides of the same coin (Pfeiffer, 1993), both essential for disabled citizens. In this paper, I use the term Disability Rights Movement to encompass both types of activism. In 2002-03, when this research was done, this CIL recruited potential activists into a broad notion of disability rights activism.
A. Social Movement Franes
Social movement activists need, among other things, a "frame," a "collective identity," and a sense of efficacy. A frame is a "schemata of interpretation that enables individuals to locate, perceive, identify, and label occurrences within their life space and world (Goffman 1974). Frames function to organize experience and guide action." (Snow, Rochford, Worden, & Benford, 1986) . Frame transformation processes take activities, events and biographies that are already meaningful within one primary frame and redefine them in terms of another frame. This involves altering the perceived seriousness of the condition or problem so that what was previously understood as unfortunate is now viewed as unjust or immoral. Barnartt & Scotch (2001) describe a two-stage process in the Disability Rights Movement in which the medical model of disability was invalidated by "frame stripping" and events were then "reframed" in terms of a social model of disability. As part of this framing process, the problems of disability were redefined from personal tragedy to social oppression.
Frame transformation involves shifting attribution so that blame for the problem or condition is externalized rather than internalized. Potential activists need to shift from victim-blaming to system-blaming (Polletta & Jasper, 2001; Snow et al., 1986). In this process, group boundaries of "us" and "them" are constructed (Taylor & Whittier, 1992). As social movement actors work to transform a frame from personal tragedy to social injustice and to shift attribution from the self to society, they identify players in the movement's world and impute or ascribe characteristics and awareness to them in ways that explicitly or implicitly define the characteristics and awareness of social movement adherents (Hunt, Benford, & Snow, 1994).
B. Collective Identity
Collective identity is a necessary aspect of all social movements (Bernstein, 2005; Hunt et al., 1994). It has been defined as "an individual's cognitive, moral, and emotional connection with a broader community, category, practice, or institution" (Polletta & Jasper, 2001). Researchers have demonstrated that individuals come to social movements through a nexus between their own identities and the movement's collective identity or through a process of identity transformation (D. A. Snow & McAdam, 2000). Because disability is a stigmatized identity (Anspach, 1979; Putnam, 2005), it is likely that individuals will go through a process of identity transformation "from shame to blame" as they are recruited into the movement (Britt & Heise, 2000; David E. Snow et al., 1986).
The construction of a collective identity among people with disabilities is complicated by several factors, including heterogeneity and medically constructed passivity. People with disabilities may share many of the negative experiences of other groups with deviant statuses, including prejudice, stigma, discrimination, and differential treatment. However, the question of who is disabled varies depending on the definition of disability, in contrast to race or gender, which can rely more on physical differences. In fact, researchers have acknowledged that there is no single or common definition of disability, due in large part to its multi-faceted nature (Pfeiffer, 2001). Disability, even more than other status categories, exists on a fluid and unstable continuum. It varies according to "visibility, stability, degree of interference with physical, mental or cognitive functioning, degree to which impairments are life-threatening, degree of pain, degree to which impairments pose ongoing medical problems" (Barnartt and Scotch, 2001, xvi) as well as timing of entry into and exit from the condition, extent and type of socialization into a disabled state, race, sex, and ethnicity. Thus, recruitment is an extremely difficulty process.
A sense of efficacy is a crucial aspect of social movement activism (Klandermans, 1984). Efficacy is a social-psychological concept and includes both self and collective aspects. Social movement recruiters seek to invoke in potential activists a sense of personal efficacy, or the belief that one can produce or avoid particular outcomes through one's own action, and collective efficacy, or the belief that goals can be achieved through collective action (Bandura, 2000). Efficacy is a subjective assessment and, thus, has been identified as part of the framing processes engaged in by movement recruiters. Snow et al. (1986) noted that creation of a feeling of efficacy was a central aspect of framing, because people will not act if they do not believe their actions can lead to change. Movement recruiters often work to amplify beliefs held by potential activists, including beliefs about the seriousness of the problem, the necessity of "standing up," and the probability of change (David E. Snow & Benford, 1988). Recruiters clarify and amplify these beliefs in order to invoke feelings of personal and collective efficacy among movement constituents.
Some have argued that efficacy takes on particular salience for disabled people who are often socialized into passivity and deference to medical experts (Shakespeare, 1993). This passivity is a central focus of the Independent Living aspect of the disability movement. Centers for Independent Living explicitly assert a right to self-determination for disabled persons (Cole, 2001). According to the independent living "paradigm" of disability, the disabled seek self-determination and full participation as citizens (DeJong, 2001). Both aspects carry rights and responsibilities. Self-determination involves an interpretation of barriers as social injustice rather than individual functional loss or tragedy. This requires frame transformation. But self-determination also requires individual behavioral and affective change. To be a self-determining adult, one must exercise informed choice and assert control over the decisions of daily life. These expectations challenge the still dominant cultural expectations that people with disabilities are passive, dependent, and incapable. Moreover, many disabled persons are among the least powerful members of American society, oppressed in terms of social class and race/ethnicity. CILs, then, assert a belief in efficacy as a necessary component of a positive disability identity. The question, then, given the challenges of recruitment to disability activism and the socialization into passivity, is how disability rights activists frame and construct a sense of efficacy among their disabled recruits.
The CIL as a "Free Space" for Movement Recruitment
Institutions removed from the physical and ideological control of those in power have been described as "free spaces" (Morris, 1984) because they are places in which oppressed persons can develop oppositional identities and counter-hegemonic understandings of the world (Polletta & Jasper, 2001). In such places, the individuals have physical and ideological distance from dominant institutions and thus a sort of breathing room in which to collectively create alternative worldviews. The history of CIL's demonstrates that they can be such a place.
Centers for Independent Living ("CIL's") have been involved in the DRM and ILM since the 1970s (Fleischer & Zames, 2001; Shakespeare, 1993). Centers for Independent Living are community-based peer mentoring organizations developed to meet the needs of local disabled populations (Crewe & Zola, 2001; Frieden, 2001). In 2002, CIL's numbered more than 300 nationwide and served more than 34,000 individuals in the state where Lake CIL is located. Over the past four decades they have served as central social locations for interaction between people with different types of impairments and recruitment of potential participants into the movement. Centers, their staff, and their consumers have participated in actions seeking civil rights and state-provided services.4
This paper is based on a twelve-month period of ethnography at Lake CIL. The research included on-site participant-observation research, semi-structured in-depth interviews with most staff and a range of consumers, and analysis of Center materials ranging from the Center handbook to annual reports to federal funding agencies. During this year, I observed activities 2-3 days per week. I sat in on two full three month sessions of the independent living course offered on the premises of the CIL, observed several days at off-site independent living classes, worked at the reception desk helping to answer phones, observed staff meetings, and engaged in ongoing informal conversations with CIL staff and consumers. At the end of each day of observation I wrote detailed field notes that fleshed out jotted notes I had taken during the day (Lofland, Snow, Anderson and Lofland 2006). These were not only "thick description" (Geertz 1973), but also analytic field notes (Lofland et al. 2006) in which I analyzed the meaning of the events and activities I had observed. These analyses laid the foundation for subsequent observations. In addition, I formally interviewed 16 consumers and 12 program staff, including the director and assistant director, direct service staff and administrative staff, in 1 ½ to 2 hour semi-structured interviews. My analysis is based on Burawoy's (1998) extended case method in which early hypotheses are amended as field observations present confirmation or anomalies. Here I use the extended case method to study culture rather than social structure (see Eliasoph and Lichterman 1999).
This CIL was located in a Midwestern urban area. It served more than 3000, mostly working-age, consumers5 per year on average, and more than one-third participated in independent living activities. In 2002, most (54%) consumers had a physical impairment. Fifteen percent had a mental or emotional impairment, 13% had multiple impairments, 9% had cognitive impairments and a small number were hearing or vision impaired. Sixty-eight percent of the consumers were African-American, 27% were Caucasian, and 4% were Hispanic. The Center served more men (60%) than women. The staff resembled the consumers in terms of race/ethnicity, gender, and impairment. Several staff members were former consumers of the independent living training courses run by the center. All staff met Center criteria for living independently themselves and all were able to discuss their own disabilities and the disability experience with ease.
The Center operated several three-month independent living skills training courses in several sites. Center consumers were referred to the IL courses from community agencies, nursing homes, state vocational rehabilitation offices, social workers, word-of-mouth, and center staff engaged in one-on-one peer counseling. The organization also provided information and referral to more than 2000 disabled persons per year, did advocacy work on issues ranging from transit and housing accessibility to enactment of Medicaid waiver legislation, trained personal assistance providers and users, and sponsored several disability-specific self-help groups.
This CIL served its local community like most CILs. However, many in the local population experienced multiple inequalities that may not be common in all CILs nationwide. The poverty level in this community was 26% in 1999, while the US poverty rate stood at 12.4% (U.S. Census data). While the national rate of disability for those age 5 and over in 2000 was 19.3%, the local disability rate was 28.3% (Census, 2003). This CIL is located in an urban area with a predominantly nonwhite, especially African-American, population. The fact that this Center actively directed a large proportion of clients into independent living classes and services reflected both their commitment to disability rights activism and the perception that their consumers often lacked personal capacity to advocate and act for themselves.
Constructing a Collective Disability Identity
Snow and his colleagues (1986) identified four variations of collective identity framing that can occur in social movement recruitment. All four build on or transform pre-existing frames. Barnartt and Scotch (2001) identified the frame extension process used by activists during the early stages of disability protests in the 1970s. These disability activists took the existing civil rights frame and "extended" it to interpret the social condition of people with disabilities. Lake CIL staff engaged in some frame extension when they likened the experience of disability to that of African — Americans. For example, one woman explained, "I liken it to the civil rights movement. Just because you are a person with a disability does not mean you don't want to live in your own home, drive your own car, ride on the bus. We are Americans." This explanation was offered to consumers as a reason to take action to protect their rights. The demands of African-Americans for equal access to the rights and opportunities afforded white Americans was extended to include similar demands by the disabled.
However, frame extension relies on salient identities or interests among potential movement followers. Many of the early disability rights activists had identified oppression as a central part of the disability experience, a few had participated in Civil Rights and anti-war movement activities, and many were familiar with the thinking and writings of civil rights and women's movement activists (Barnartt & Scotch, 2001). This was not the case for consumers at Lake CIL.
Instead, most consumers expressed a "misframing" of disability in the eyes of the CIL staff, seeing their disability as a tragedy and a "handicap." This framing fit within the dominant medical model to which most had been socialized, but it did not support movement building. Researchers have noted that successful mobilization of groups with negative status requires creating a change in the ways that potential movement participants perceive their life situation and themselves (David E. Snow et al., 1986). CIL staff engaged in frame transformation by redefining consumers' biographies and experiences in terms of a social model of disability.
While consumers at the Center self-selected in that they asked the CIL for some type of services, most consumers did not come with any clear notion of disability rights or the philosophy of independent living. One staff member described the usual consumer, saying:
I think most of them come in, well, where's my apartment? They don't even have a concept of the independence that you would have that would cause you to look for an apartment…
In response to this lack of understanding, the Center gave every consumer a copy of the "Consumer Handbook" which detailed the mission of the CIL. That mission was described as empowering people with disabilities to "achieve" independence through "participation, education, and self-determination" by promoting "dignity, well being and choices." Written materials defined independent living as:
the ability to participate fully in society and exercise personal control over lives. Control is based upon the ability to make informed choices of various options thereby minimizing reliance on others in making decisions and in performing everyday activities
The materials stressed that participation and self-determination are both rights and responsibilities. Center materials, reflecting the IL philosophy, informed consumers that people with disabilities demand equal access to all realms of social, political, and economic life.
CIL staff presented a "diagnostic frame" in which the difficulties experienced by impaired people were the result of injustices imposed by societal barriers and attitudes (Hunt et al., 1994). Familiar conditions and experiences were redefined so that experiences previously described as unfortunate, or even tragic, were presented as unjust and unfair. Staff repeatedly explained that disability is a consequence of environmental and attitudinal barriers rather than functional loss. Facilitators taught correct disability terminology throughout the course, providing "appropriate" vocabularies to help consumers reconstruct their personal identities in ways that linked them to the Disability Rights Movement (Benford, 1993). When a consumer referred to herself as "handicapped," the term was disparaged by a staff member who explained its origins in begging with cap held out in hand. Another staff member complained about having to ask for a "handicapped" room, saying "It sounds like the bed is crooked or something." She recommended asking for "accessible" rooms, putting the emphasis on the hotel's obligation to remove environmental barriers.
Staff members also worked to establish group boundaries between those identified as disabled and the non-disabled, or between the "challenging group" and the "dominant group" (Taylor & Whittier, 1992). This effort included expressions of commonality among individuals with varied impairments and disability experiences. Part of the creation of an "us" involved a shift in attribution for hardships experienced. Difficulties that had been ascribed to fate or tragedy were redefined as caused by social barriers and attitudes.
Staff saw the cross-disability nature of the consumer population as an important aspect of developing a group consciousness. One staff member explained:
To me there's a lot of advantage and power in being in a group with people with similar and different disabilities. Being able to and having to tolerate each other. I think learning about other people's disabilities helps to solidify the disability movement, maybe just a small part. It also lets people know that they're not alone.
Nonetheless, staff had to acknowledge the heterogeneity of disability which causes particular challenges to organizing the disabled (Fagan & Lee, 1997; McGuire, 1994). This CIL dealt with heterogeneity by recognizing functional differences between impairments while interpreting experiences, whether of discrimination, stigma, pity, or overprotectiveness, in common terms. For example, a facilitator asked group members what they would need in the way of accommodation in an apartment:
There are different kinds of disabilities so we need different types of accommodation. For example, a deaf person needs a flashing light, not a doorbell. What do you need, Don?" Don, who is visually impaired, said, "An intercom." She asked Mike, who has difficulty speaking. He gestured. She said, "Mike needs a sign, pad and pencil. We all need some type of accommodation.
Another staff member responded to the secondary socialization of an adult-onset disabled consumer by stressing the shared feelings of grief and anger felt by all disabled people.
Martha said, "Since I had my stroke I see things differently." Dionne, a staff facilitator with a visual impairment, responded, "That's because you're still adjusting, learning to cope. They say people who get their disability later in life find it harder to cope, to adjust." Then she asked the class, "Those of you who got your disabilities later, did you experience anger, pity, depression? Did you feel like, 'I don't want nobody to see me like this cause this ain't me?'" There was a big chorus of "Yes." Then she turned to the others. "People born with disabilities, have you felt anger at being different? " They also said yes. Dionne continued, "As a child I was happy. But when I grew up, I went through all those feelings for a very long time. People say it's different if you're born with it, but we all have the same feelings. It's what you do with the feelings...the anger, the depression..."
Thus CIL staff interpreted diverse functional needs in shared terms and diverse experiences of becoming impaired as shared feelings. These framings helped to build a community of "us" among the heterogeneous Center population.
The staff also taught disability acceptance, awareness, and self-esteem. These goals were set within the context of hundreds of years of discrimination, fear, pity, stigma, and segregation alleged to have been faced by all people with disabilities. "Us" versus "them" divisions were built by characterizing members of the general public and certain professionals as guilty of the foregoing behaviors against the disabled. Lake CIL informed consumers about civil rights laws for people with disabilities. These laws were analogized to those protecting other "minority" groups and the position of people with disabilities was explicitly compared to that of African-Americans in terms of similar experiences of prejudice, segregation, and discrimination. Medical control over impairment was constantly challenged. Both staff and consumers delighted in sharing stories of functional limits erroneously assessed by doctors. An entire class session was devoted to self-care in health, nutrition, diet, cleanliness, and home remedies. These sessions operated to define group boundaries by identifying opponents as prejudiced and paternalist. While the use of medical care was generally viewed as necessary, it was described as a struggle in which people with disabilities confronted institutions that controlled them and rendered them dependent. The identification of these opponents worked to shift attribution for the problems of impairment from the medical condition to the environmental and attitudinal barriers created by others.
In shifting attributional orientation from internal feelings of fatalism to external structural blame, these activists followed a common strategy of identity movements (Bernstein, 2005). However, Lake CIL also stressed the need for disabled consumers to accept responsibility for personal action. In this, activists behaved more like organizers of some religious or self-help movements (David E. Snow et al., 1986). Indeed, part of the history of the Independent Living Movement is a turn to self-help and away from reliance on medical and rehabilitation professionals (Fleischer & Zames, 2001; Shapiro, 1993; DeJong 2001). While CIL staff did not attribute individual blame to consumers for the historical experience of disability oppression, they did imply individual blame for those who failed to challenge this oppression once they had been made aware of its existence. This became apparent in the framing of appropriate responses to oppression.
Social movement recruiters negotiate and frame everyday actions that subordinate groups can use to resist and challenge existing systems of domination (Taylor & Whittier, 1992). These tasks include what Snow and Benford (1988) call "prognostic" framing, or the identification of strategies and tactics, and "motivational" framing, or the call to arms. Staff engaged in prognostic framing by pointing to historical and contemporary struggles for disability rights. Consumers learned about Ed Roberts, the "father" of the Independent Living Movement, about the Section 504 sit-ins in San Francisco, and about ADAPT6 and its struggles for accessible transportation in the past and personal attendant services in the present. In addition, information was provided about solutions to the problems of discrimination and oppression. Staff explained the different civil rights laws protecting disabled people and stressed the right to the public provision of services necessary to exercise basic civil and political rights.
Lake CIL staff engaged in motivational framing when they told disabled consumers that no one would help the disabled but themselves. Some staff described their own participation in ADAPT demonstrations, both locally and in Washington, D.C. The walls of the classrooms were covered with photos of staff participating in a number of marches and rallies. While consumers were advised that they did not all have to "march" to do the work of the disability movement, they were told, "Everybody got a part to play. You got to walk the walk, people." Lake CIL staff provided consumers with information about effective advocacy (be polite, but firm), appropriate channels (you can go to the Department of Transportation or to the City Council about the bus lifts not working), and different strategies (vote, write letters, call, attend meetings, demonstrate, join ADAPT).
However, staff members did not merely provide information about individual and group activism possibilities. The Center required active participation by consumers. The construction of a feeling of efficacy is a distinct aspect of recruitment, linked to the prognostic and motivational framing activities. Bernstein (1997, 537) identified two types of identity deployment strategies that individual or groups can pursue: "Identity for critique confronts the values, categories, and practice of the dominant culture. Identity for education challenges the dominant culture's perception of the minority or is used strategically to gain legitimacy by playing on uncontroversial themes." While most research identifies the work done to frame group strategies, Lake CIL engaged in framing for both individual and group action. Indeed, identity deployment on an individual level was seen as an essential component of movement activism.
CIL staff wanted evidence of feelings of efficacy and the evidence most desired was individual identity deployment. One staff member advised consumers, "Nothing makes me madder then to call consumers a year after they've been here and find that they have done nothing to change their situation." When consumers indicated an expectation that staff would do something for them, the staff-person responded that they must do it themselves. Staff exhorted consumers to reject the paternalism of the helping professions, called "resource providers," and to model self-determination in every interaction. The following exchange early in one independent living course clearly demonstrated the Center's expectation and support for "doing it by yourself."
At lunch time, George, a consumer with quadriplegia, asked Evelyn, another consumer, to heat his sandwich in the microwave. Evelyn brought it back and asked George if he wanted her to open it. He said clearly and a bit defiantly, "I can do it myself." Evelyn pushed him, asking "Are you sure? It's wrapped in plastic." The facilitator intervened immediately, saying, "He said he can do it by himself!" She rolled over to George. "Those are the words I love to hear. Remember what I told you." She raised a clenched fist, saying "Be firm".
While CIL staff expressed understanding of and empathy for consumers' experiences of overprotectiveness, stigma, pity, and discrimination, they identified such attitudes as primary barriers to independent living and disability rights. They ruefully described moments when they were unsuccessful in challenging these attitudes. Consistently, however, staff demanded that consumers challenge such damaging attitudes. Potential recruits were told to demand to do it oneself even if it was hard for family members:
A consumer asked, "How can I get my daughter to stop overprotecting me?" The facilitator answered, "You don't let anyone else's perception become your reality. When I broke my neck my doctors told me I would have to have everything done for me. But I do everything — I cook, wash, shop, dress myself, pay my bills. My family didn't want to let me — they was in tears sometimes watching me struggle. But I said, 'I need to try. Let me try.' "
Staff explained that information about options was given with the expectation that consumers would then actively make choices, as explained by a visually impaired woman:
I can take the bus, but I don't like to. I prefer the Para transit. That's the whole idea about independence to me. It's knowing how to do it, even if I don't choose to do it.
Consumers were told to pursue self-advocacy. A staff member with cerebral palsy advised consumers about vocational rehabilitation counselors who pressure clients to enter work programs in the areas of "food, filth, or flowers" designed for disabled people.
What I want to say is, you being people with disabilities, the state Rehab Services got this deal where they're trying to push you off into the first program that goes on. Resist this. Don't be afraid to call their supervisor. Don't go into a program that you don't really want to go into.
Staff also promoted collective advocacy. When several consumers complained about some of the conditions at their nursing home, a CIL staff member encouraged them to speak out about mistreatment they were receiving in their nursing home, saying "I want to stress to you that we have a choice. I talk to people and they say, 'But they'll make it worse for me.' You do need strong support, but it's important to say something. If you all band together, what can they do to you?"
Another contrasted her own efforts to live independently with the "choice" of a friend to remain in a nursing home.
I know a guy. He's a quadriplegic also, and he can do more than I can. He lives in the nursing home, because he doesn't choose to do all the work that goes along with living in your own place. He doesn't want to pay the rent. He doesn't care about cooking food. He's comfortable. He doesn't do anything! He sits in that room with his power chair and rolls around the bed all day long.
This discourse of action and decision-making identified the proper affective, moral, and behavioral qualities promoted by CIL staff. The qualities included courage, tenacity, assertiveness, and awareness. As one class facilitator explained, "They say people with disabilities are mean. It's not that. They misuse us and they don't consider us nothing, so we have to raise hell."
Disabled persons who did not exercise choice or assertion were blamed for their failures. Thus, the staff member who described her friend's life in a nursing home implicitly criticized his choice as demonstrating weakness. In another episode, a staff member chastised a consumer for failing to use the assistive technology the Center had obtained for him.
In demanding that consumers actively demonstrate self-determination, assertiveness, and awareness of disability oppression, Lake CIL promoted an individual level identity deployment strategy. By acting "independently," consumers would use themselves, their own bodies, as a site of activism and challenge to the dominant culture's perception of the disabled. In Bernstein's (1997) terms, this was identity deployment for education. If we return to the opening vignette, we can see that Martha's response to her mistreatment by the bus company and the convenience store employee represented an affirmation of a collective disability identity ("the real deal"), the use of that identity for education and a challenging of dominant attitudes ("you trying to get away with something because I'm a person in a chair, [but] I'm not gonna pay"), and an expression of efficacy ("I am going to complain [about the busses]").
This research suggests that individual level identity deployment is another aspect of social movement mobilization efforts. This type of identity deployment brings together acceptance of the collective identity frame and the link between individual and group efficacy. Lake CIL activists understood self-determination to be a continuum of behavior that reflected a strong collective identity grounded in challenging dominant stereotypes about disability. They modeled and demanded that consumers take a series of steps demonstrating personal and then group efficacy. This continuum reflected the following progression:
Do it yourself Ȥ Exercise informed choiceȤSelf-advocacyȤGroup advocacy ȤSocial Movement Protest.
The philosophy of self-determination, as defined by the ILM, was of central importance to the frame transformation strategies employed in this micro-mobilization process. The Center strove to develop a consciousness of disability grounded in a history of group oppression rather than functional limitation. Staff modeled assertiveness and the exercise of informed choice, they demanded that consumers be active participants in the training, and they applauded behavior that challenged the medical construction of disability identity. They encouraged self-advocacy and provided information about how and where to do that. They reminded consumers of the power and protection to be found in group challenge and informed them that no one would do this for disabled people. Finally, they suggested that some should join in protest. The first three steps were expected of all consumers, with criticism of those who failed in these tasks.
Self-determination was constructed as both a right and a responsibility of people with disabilities. The right had to be demanded from those who continue to enact environmental and/or attitudinal barriers. But the rights also had to be exercised by people with disabilities. The exercise of self-determination affiliated an individual with the collective disabled group. The exercise of self-determination challenged symbolic meanings about whom and what the disabled are. It was part of the identity project of the disabled rights movement, a resistance to negative social definitions. By adopting a different standard of behavior as a person with a disability and by deploying a collective disability identity in individual interactions, the consumer was helping to renegotiate the meaning of disability.
Demands for autonomy and the right to do it oneself as well as challenges to cultural codes are not unique to the disability rights movement. Many of the so-called New Social Movements share these characteristics. But the exercise of autonomy, choice, and self-determination take on particular power in the case of disabled people because these actions challenge cultural expectations that people with disabilities are passive and dependent. Shakespeare (1993) has argued that the fact of self-organizing by people with disabilities challenges these cultural expectations. This research suggests that self-organizing is an ongoing project and that mechanisms to promote personal responsibility for self-determination are a central part of the construction of collective identity among people with disabilities.
- Anspach, R. R. (1979). From stigma to identity politics: Political activism among the physically disabled and former mental patients. Social Science & Medicine, 13A, 765-773.
- Bandura, A. (2000). Exercise of human agency through collective efficacy. Current Directions in Psychological Science, 9(3), 75-78.
- Barnartt, S., Schriner, K., & Scotch, R. (2001). Advocacy and political action. In G. L. Albrecht, K. D. Seelman & M. Bury (Eds.), Handbook of Disability Studies (pp. 430-49). Thousand Oaks, CA: Sage Publications.
- Barnartt, S., & Scotch, R. (2001). Disability Protests: Contentious Politics 1970-1999. Washington, D.C.: Gallaudet Press.
- Benford, R. D. (1993). "You could be the hundredth monkey": Collective Action Frames and Vocabularies of Motive Within the Nuclear Disarmament Movement. Sociological Quarterly, 34(2), 195-216.
- Bernstein, M. (2005). Identity politics. Annual Review of Sociology, 31, 47-74.
- Britt, L., & Heise, D. (2000). From shame to pride in identity politics. In S. Stryker, T. J. Owens & R. W. White (Eds.), Self, Identity, and Social Movements (Vol. 13, pp. 252-68). Minneapolis: University of Minnesota.
- Bruyere, S. M. (2000). Civil rights and employment issues of disability policy. Journal of Disability Policy Studies, 11(1), 18-28.
- Burawoy, M. (1998). "The extended case method." Sociological Theory, 16(1), 4-33.
- Census, U. S. (2003). Disability Status: 2000. Washington, DC: U.S. Census Bureau.
- Colker, R. (1999). The Americans with Disabilities Act: A windfall for defendants. Harvard Civil Rights-Civil Liberties Law Review, 34, 99-162.
- Cole, J. A. (2001). Skills training. In N. M. Crewe & I. K. Zola (Eds.), Independent Living for Physically Disabled People (pp. 187-204). San Jose, CA: People with Disabilities Press.
- Crewe, N. M., & Zola, I. K. (Eds.). (2001). Independent Living for Physically Disabled People. San Jose, CA: People with Disabilities Press.
- Davis, L. J. (2001). Identity politics, disability, and culture. In G. L. Albrecht, K. D. Seelman & M. Bury (Eds.), Handbook of Disability Studies (pp. 535-45). Thousand Oaks, CA: Sage Publications.
- DeJong, G. (2001). Defining and implementing the independent living concept. In I. K. Zola (Ed.), independent living for physically disabled people (pp. 4-27). San Jose, CA: People with Disabilities Press.
- Engel, D. M., & Munger, F. W. (2003). Rights of Inclusion: Law and Identity in the Life Stories of Americans with Disabilities. Chicago: University of Chicago Press.
- Eliasoph, N. and P. Lichterman. (1999). "` We begin with our favorite theory . . .':
- reconstructing the extended case method." Sociological Theory 17(2), 228-34.
- Fagan, T., & Lee, P. (1997). 'New' social movements and social policy: A case study of the disability movement. In M. Lavalette & A. Pratt (Eds.), Social Policy: A Conceptual and Theoretical Introduction (pp. 140-160). London: Sage Publications.
- Fleischer, D. Z., & Zames, F. (2001). The Disability Rights Movement: From Charity to Confrontation. Philadelphia: Temple University Press.
- Frieden, L. (2001). Understanding alternative program models. In N. M. Crewe & I. K. Zola (Eds.), Independent Living for Physically Disabled People (pp. 62-72). San Jose, CA: People with Disabilities Press.
- Geertz, C. (1973). The Interpretation of Cultures: Selected Essays. New York: Basic Books.
- Hahn, H. (1985). Introduction: Disability policy and the problem of discrimination. American Behavioral Scientist, 28(3), 293-318.
- Houtenville, A. J., & Adler, A. F. (2001). Economics of Disability Research Report #4: Estimates of the Prevalence of Disability, Employment Rates, and Median Household Size-Adjusted Income for People with Disabilities Aged 18 through 64 in the United States by State, 1980 through 2000. Ithaca, NY: Cornell University Rehabilitation Research and Training Center for Economic Research on Employment Policy for Persons with Disabilities.
- Hunt, S. A., Benford, R. D., & Snow, D. A. (1994). Identity fields: Framing processes and the social construction of movement identities. In E. Larana, H. Johnston & J. R. Gusfield (Eds.), New Social Movements: From Ideology to Identity (pp. 185-208). Philadelphia: Temple University Press.
- Klandermans, B. (1984). Mobilization and participation: Social-psychological expansions of resource mobilization theory. American Sociological Review, 49(5), 583-600.
- Krieger, L. H. (Ed.). (2003). Backlash Against the ADA: Reinterpreting Disability Rights. Ann Arbor: University of Michigan Press.
- Lofland, J., D. Snow, L. Anderson, L.H. Lofland. (2006). Analyzing Social Settings: A Guide to Qualitative Observation and Analysis (4th ed.). Belmont, CA: Wadsworth/ Thomson Learning.
- McGuire, J. F. (1994). Organizing from diversity in the name of community: Lessons from the disability civil rights movement. Policy Studies Journal, 22(1), 112.
- Morris, A. D. (1984). The Origins of the Civil Rights Movement: Black Communities Organizing for Change. New York: Free Press.
- Pfeiffer, D. (1993). Overview of the disability movement: history, legislative record, and political implications. Policy Studies Journal, 21(4), 724-35.
- Pfeiffer, D. (2001). The conceptualization of disability. In B. M. Altman & S. Barnartt (Eds.), Exploring theories and expanding methodologies. (Vol. 2, pp. 29-52). Oxford: Elsevier.
- Polletta, F., & Jasper, J. M. (2001). Collective identity and social movements. Annual Review of Sociology, 27, 283-305.
- Putnam, M. (2005). Conceptualizing disability. Journal of Disability Policy Studies, 16(3), 188-98.
- Scotch, R. K. (1988). Disability as the basis for a social movement: Advocacy and the Politics of Definition. Journals of Social Issues, 44(1), 159-72.
- Selmi, M. (2008). Interpreting the Americans with Disabilities Act: Why the Supreme Court rewrote the statute, and why Congress did not care. The George Washington Law Review, 76, 522-75.
- Shakespeare, T. (1993a). Disabled people's self-organisation: a new social movement? Disability, Handicap and Society, 8(3), 249-264.
- Shakespeare, T., & Watson, N. (2001). Making the difference: Disability, politics, and recognition. In G. L. Albrecht, K. D. Seelman & M. Bury (Eds.), Handbook of Disability Studies (pp. 546-564). Thousand Oaks, CA: Sage Publications.
- Shapiro, J. F. (1993). No Pity. New York: Three Rivers Press.
- Snow, D. A., & McAdam, D. (2000). Identity work processes in the context of social movements: Clarifying the identity/movement nexus. In S. Stryker, T. J. Owens & R. W. White (Eds.), Self, Identity, and Social Movements (Vol. 13, pp. 41-67). Minneapolis: University of Minnesota Press.
- Snow, D. E., & Benford, R. D. (1988). Ideology, frame resonance, and participant mobilization. In B. Klandermans, H. Kriesi & S. Tarrow (Eds.), International Social Movements Research (Vol. 1: From Structure to Action, pp. 197-217). Greenwich, CT: JAI P: JAI Press.
- Snow, D. E., Rochford, J., E. Burke, Worden, S. K., & Benford, R. D. (1986). Frame alignment processes, micromobilization, and movement participation. American Sociological Review, 51(4), 464-481.
- Taylor, V., & Whittier, N. E. (1992). Collective identity in social movement communities. In A. D. Morris & C. M. Mueller (Eds.), Frontiers in Social Movement Theory (pp. 104-29). New Haven: Yale University Press.
Centers for Independent Living grew out of the Disability Rights and Independent Living Movements of the 1970s. They are federally funded community-based organizations that provide peer counseling, information and referral, independent living skills training, and advocacy to a cross-disability population. Clients of the Centers are called "consumers" reflecting the consumer rights influence on the movement of disabled persons. Disabled advocates demanded, and continue to demand, full participation in society and the right to self-determination through the exercise of informed (consumer) choice (Crewe and Zola 2001; Fleischer and Zames 2001; Shapiro 1993).
Return to Text
People with disabilities and their advocates have been struggling for rights and access to society since at least the late 1800s in the U.S. Most efforts prior to the 1970s were controlled by professionals or family members, rather than by disabled persons themselves (Pfeiffer, 1993).
Return to Text
Others have suggested that the lack of a highly visible social movement preceding the passage of the ADA opened the door for widespread misinterpretation and retrenchment by judges (Selmi, 2008; Shapiro, 1993).
Return to Text
Centers for Independent Living have been compared to the black churches of the civil rights movement or the consciousness raising groups of the women's rights movement (Barnartt and Scotch 2001).
Return to Text
"Clients" of the CIL were called "consumers," a reflection of the debt owed by the ILM to the consumer movement and its message of consumer sovereignty and mistrust of medical providers (DeJong 2001).
Return to Text
ADAPT formerly stood for Americans Disabled for Public Transit. It is a cross-disability protest organization that initially worked to get accessible public transit systems. In 1990, ADAPT changed its name to Americans Disabled for Attendant Programs Today and began working for a change in Medicaid funding to allow disabled persons to receive personal assistance services in their own homes.
Return to Text