Self-advocacy groups, which are run by and for people with intellectual and developmental disabilities, follow traditional liberal definitions of empowerment that center on the cognitive capacities of citizens. Empowerment counters threats of powerlessness and paternalism, but it also threatens to exclude people with more profound forms of cognitive impairment from political participation. Moreover, cognitive-centric accounts of empowerment fail to fully capture the kinds of trials and triumphs I witnessed while observing a regional self-advocacy office between 2008 and 2010. Using Hannah Arendt's concept of action, mainly developed in The Human Condition, I rethink empowerment along Arendt's three dimensions of politics as spontaneous, plural, and public. I provide a narrative account of one self-advocacy group's monthly chapter meeting, arguing that their combined public presence successfully combats ableist prejudice, even as it fails to imitate liberal understandings of empowerment. My account thus offers critical disability studies an alternative conception of political subjectivity.
One of the primary aims of the self-advocacy movement in the United States is to empower people with intellectual and developmental disabilities. Empowerment encapsulates a complex process whereby a person comes to recognize herself as a member of an oppressed class and then uses her identification as a basis for demanding rights and empowering others who are similarly situated. Although important, this process of empowerment assumes that all individuals possess a threshold level of cognitive capability that, in fact, excludes some people with more profound forms of intellectual and developmental disabilities. As such, empowerment threatens to undermine the goal of empowering all people with intellectual and developmental disabilities.
Importantly, the language of empowerment is central to the self-advocacy movement and democracy more broadly. Take, for instance, People First, the oldest and largest self-advocacy organization in the United States. People First of West Virginia stresses cognitive capability when they state, "Self-advocacy is understanding your strengths and needs, […] knowing your legal rights and responsibilities, and communicating these to others" (emphasis added). 1 Similarly, in an article written by self-advocates entitled "Writing it Ourselves," the authors describe self-advocacy as "'expressing yourself, getting to know people and sorting things out'" (Wyre Forest Self Advocacy and Tarleton 2005, 65). While these are vital tasks for self-advocates, they pose two problems. First, these tasks exclude from self-advocacy some people with intellectual and developmental disabilities. Second, this understanding of empowerment is too narrow as it ignores non-cognitive modes of political action.
In rethinking empowerment, I draw on an unlikely source: Hannah Arendt. Arendt's conception of action, developed in The Human Condition, provides us with a rich resource for rethinking political subjectivity. More specifically, I use Arendt's account of politics to evaluate my observations of a self-advocacy organization gathered over a two-year period. Using Arendt, I began to see that both nondisabled staff members and self-advocates with developmental and intellectual disabilities were offering me an alternative account of empowerment. In this new model, our attention is focused outward—judging the physical location of advocacy practices as well as the kinds of relationships that self-advocacy groups foster—rather than measuring empowerment by an inner cognitive consciousness.
I. Empowerment as Sovereignty
In many ways, we can understand empowerment as a model of sovereignty: control over one's life, body, future, and political movement. My use of the term sovereignty builds on critical disability studies scholars who see sovereignty as a modernist fabrication—a mythical norm used to stigmatize people with disabilities. According to Margrit Shildrick, the sovereign self implies that we—our bodies and minds—are "under control, predictable, determinate, and above all independent in form and function" (2000, 219; Jarman 2005). Sovereignty thus ignores the ways in which people are vulnerable, unpredictable and interdependent.
Empowerment as sovereignty is essential to defining the aims of self-advocacy in the United States. It encapsulates liberal democratic norms of independence and autonomy—that are paramount in American political culture—and counters the profound form of powerlessness that marks the history of people with intellectual and developmental disabilities. Acquiring autonomous control is pivotal to empowerment: without it, advocates forfeit the message of the movement to nondisabled allies or professionals.
For example, the website of People First of Washington states, "WE ARE PEOPLE FIRST AND WE CAN SPEAK FOR OURSELVES!" 2 People First of California similarly describes their philosophy:
People with developmental disabilities are the only people to empower other people with developmental disabilities. Only the people, who are part of a certain culture, can "empower" people of that culture; to become strong, they have to make the decisions and do the work of their movement, themselves. 3
Making decisions, communicating the message and acquiring a cultural identity are all cognitive tasks. Dan Goodley and Griet Roets echo this model of empowerment: "Through sharing life stories, self-advocates are able to recognize their oppressed status in the dominant discourses and institutions in which they find their selves positioned" (2008). 4 A cognitive thread links these accounts as political solidarity requires self-recognition, understanding and self-assertion.
People with intellectual and developmental disabilities value acquiring control over their own lives. In research conducted by and about people with intellectual disabilities, researchers identified "achieving some level of control over their own lives" as a shared value, and thus explored ways to facilitate self-advocacy practices that could foster control (Townson et al. 2007, 325; see also Chapman et al. 2012). Stacy L. Nonnemacher and Linda Bambara interviewed self-advocates with intellectual disabilities and found two recurring themes when they asked people to define self-determination: "speaking out and being in charge" (2011, 331). According to one interviewee, "when 'the ball is in my court, I decide how things should be done"' (320). Similarly, in interviews with thirteen self-advocates, Gilmartin and Slevin find that self-advocates value having control over decision-making, as one participant stated, "'we decide ourselves'" (2010, 156).
Thus, researchers argue that one of the most effective methods to empower people with intellectual disabilities is the creation of self-advocacy groups in which members control the agenda and make key decisions (Tsuda and Smith 2004). Researchers find, however, that nondisabled group advisors often exercise undue influence on group decisions (Garcia-Iriarte et al.) or underestimate self-advocates' abilities (Goodley 2001). Consequently, scholars interested in empowering the self-advocacy movement aim to increase the political voice of individual members (Goodley), to build relationships between people with disabilities (Sprague and Hayes 2000), and identify what type of organizational structures promote individual agency (Garcia-Iriarte et al. 2009). While these interventions are important, they circumvent the tension between sovereignty and cognitive vulnerability.
We may be reluctant to decouple empowerment from sovereignty not only because self-advocates value control, but also because the self-advocacy movement is constantly under siege. Indeed, self-advocates argue that professionals and service agencies threaten to co-opt empowerment by paying lip service to self-determination while refusing to displace the power hierarchies between professionals and self-advocates (Buchanan and Walsmley 2006; Aspis 1997). Moreover, as research demonstrates, self-advocates themselves identify control as an important value in their lives and thus it should not be discarded. But even in research that documents the value of control, researchers also point out how the meaning of self-advocacy remains ambiguous (Chapman et al. 2012) and that control is just one of many values that people with intellectual disabilities hold (Gilmartin and Slevin). We thus might ask, how does our vision of self-advocacy shift when we no longer appraise its effectiveness solely through sovereignty?
II. Arendtian Empowerment: From Sovereignty to Spontaneity
Arendt's vision of politics aptly captures the thrust of the self-advocacy movements' activities that I observed and, yet, Arendt presents several challenges for a project on disability and democracy. Her division between public and private spheres, her inability to see the political dimensions of pain, and her characterization of speech as the marker of human activity threatens to devalue people with intellectual disabilities and their experiences. I find promise, however, in Arendt's conception of political action as spontaneous, plural and public. Rethinking empowerment through these dimensions pushes us beyond the traditional liberal sovereign account. My analysis is not meant to fully articulate Arendt's theory, but rather pushes off Arendt as a swimmer pushes off the ledge of a pool.
First, Arendt offers us a theory of a semi-sovereign subject in which "no one can know himself, for no one appears to himself as he appears to others" (2003, 5). While the sovereign subject controls all of her actions so they conform to her identity, the spontaneous subject welcomes action that reveals to herself and to others new dimensions of her identity. Arendt critiques modern society for stifling spontaneity because it "expects from each of its members a certain kind of behavior, imposing innumerable and various rules, all of which tend to 'normalize' its members, to make them behave, to exclude spontaneous action or outstanding achievement" (1998, 40). We forfeit spontaneity for the false promise of sovereignty (237) when we reduce politics to "solvable problems of cognition" (221). Arendt's spontaneous subject instead encounters politics as performative and unpredictable.
Arendt's critique of sovereignty hinges on her understanding of politics as plural: that deeds and words are significant when they occur in the presence of others. For Arendt, "if it were true that sovereignty and freedom are the same, then indeed no man could be free, because sovereignty, the ideal of uncompromising self-sufficiency and mastership, is contradictory to the very condition of plurality" (234). Not only do we lack full awareness of ourselves, but also we cannot foretell the interpretation or consequences of our actions. Importantly for Arendt, "to be isolated is to be deprived of the capacity to act" (188) whereas action always establishes a "web of human relationships" (233). To be sovereign is thus to be isolated and therefore apolitical.
Finally, Arendt's understanding of action as public, while also maintaining the capacity to have a private realm for oneself, is a crucial component behind the self-advocacy movement. The "true space [of politics] lies between people living together for this purpose [acting and speaking together], no matter where they happen to be" (198). The public realm makes remembrance possible. For Arendt, "The privation of privacy lies in the absence of others; as far as they are concerned, private man does not appear, and therefore it is as though he did not exist" (1998, 58). Arendt enfolds plurality into the public realm: "Being seen and being heard by others derive their significance from the fact that everybody sees and hears from a different position" (57). This public and plural nature of politics triggers multiple meanings from our actions, again splintering the façade of sovereignty.
Arendt's theory of action thus offers us another way to judge the efficacy of self-advocacy groups. While we should question whether self-advocacy practices foster self-determination, we should also ask if self-advocacy groups are meeting in public, building relationships, and promoting spontaneous action. Living spontaneously in public with others is a mode of empowerment as it powerfully contests the notion that a disabled life is not worth living. For self-advocates and allies, we need to consider empowerment—not only as an internal psychological dimension—but also as an intersubjective experience between people. When empowerment is conceptualized as control, it positions self-advocates against advisers, allies, staff and family members. And, yet, researchers find that fostering trusting and encouraging relationships between staff members and self-advocates in non-congregate settings is central to promoting self-determination (Nonnemacher 2011; Lotan and Ells 2010; Wehmeyer and Palmer 2003; Stancliffe 2001; Kennedy 1996). I describe the self-advocacy organization I observed, arguing that if we read the events under the rubric of empowerment as sovereignty, we will emerge dissatisfied. But if we look for empowerment through an Arendtian lens, we can also see how self-advocates and allies offer us an engaging and dynamic vision of political action.
III. Research Methods: Grounded Theory & Narrative Inquiry
My analysis draws heavily on the qualitative research method of grounded theory. Initially articulated by Glaser and Strauss, grounded theory challenges the extreme positivism of social science inquiry that emulates the scientific method (Glaser 1967; Suddaby 2006; Bochner 2001). Grounded theory enabled me to make meaning out of the self-advocacy movement I observed, rather than according to its explicit mission. As a political theorist, however, I did not use grounded theory in order to reach generalizable claims or develop hypotheses. Instead, I used grounded theory methods to reconceptualize key theoretical concepts.
In particular, I relied on Kathy Charmaz's description of specific methods for grounded theorists—such as theoretical sampling and memoing—by which a researcher can simultaneously immerse herself in theoretical development while remaining self-reflexive to her role as a researcher (2006). I base my analysis on field notes, which I transcribed after attending events, as I found note-taking during observations too distracting. Instead, I would record the details of the event within 24 hours of attendance. If parts of my observation would occur to me later, I would transcribe these aspects in a memo. I would continually reflect on my field notes through Charmaz's description of memoing—writing my reflections and then analyzing them in an iterative process.
By presenting my observations in narrative form—in which names and places are fictionalized to protect participants' identities—I offer the reader a rich descriptive account, showing the ways in which events filtered through my own perspective and how I elicited meaning from particular interactions. My integration of self-advocates' actions follows the work of scholars who share in the value of empowering people with intellectual disabilities by integrating their voices and actions within research as a way to destabilize dominant patterns of exclusion (Slater 2012; Roets and Goodley 2008; Aldridge 2007; Brewster 2004). Like other scholars in disability studies, I see narrative methods as a way to capture a more robust picture of people's lives and to explore relational dynamics across people with and without disabilities (Roets, Goodley and Van Hove 2007; Roets and Van Hove 2003). Narrative analysis also allows us to supplement information collected through interviews, which is important because "disabled people are subject to the internalization of dominant definitions and values of disability just like those who are nondisabled" (Snyder and Mitchell 2006, 8). Narrative analysis thus reveals values and norms that escape our own account of ourselves. By observing self-advocacy events and continually memoing on my observations, I came to reconceptualize empowerment from sovereignty to spontaneity.
IV. Overview of Self-Advocacy Group
Between November 2008 and May 2010, I observed the day-to-day operations and local chapter meetings of a self-advocacy organization in the Southern United States. The regional office that I observed employs four people and has three regional offices, which serve around twenty to twenty-five local chapters. Arlene, the director, described to me how the first chapter began:
Since then, the number of chapters has varied, reaching a high of forty, but has since declined.
It started with a small group home that actually had seen a movie about an organization in Oregon. These people in Oregon, they were empowered; they were speaking up for themselves; they were making changes in their state, and so these people, this group of I think twelve people that lived in a group home at that time, saw this movie, and they said 'we want to do that here.'
The central self-advocacy office is located in an old office building, squeezed between fast food restaurants, gas stations and strip malls. The lobby opens into a deserted first floor, once occupied by a carpet retailer that has since abandoned its space, leaving a large billboard opposite the elevator. In the one room office, Arlene sits at desk, partially obscured by a large bookcase and a monstrous computer and printer. Empty desks surround Arlene, left from another advocacy agency that disbanded when budget shortfalls made it impossible to continue advocating for its clients living in state institutions. During my time of volunteering, the organization faced its own budget crisis. While the State legislature renewed their grant, they delayed disbursing the funds, causing Arlene to forego her salary for four months and to eventually lay-off the Eastern coordinator.
The agencies that serve members also threaten to hamper the effectiveness of advocacy groups as Arlene's goal of coordinating meetings and events hinges on agencies' willingness to cooperate. For instance, out of the twenty local chapters, only one is able to meet in public; the rest gather in the residential homes or sheltered workshops in which the members live and work. When I asked Arlene to explain this discrepancy, she sighed, and explained:
Actually, we would like all of them to be meeting out in the community, but for one reason or another, I think for most of them if we tried to meet out in the community they wouldn't get there, just for transportation issues. So, for convenience sake we meet in the agencies a lot of time, and there are some agencies that are willing to work, and get their people out to different places, but for the most part, we do good just to get them to let us come in there.
She then laughed. On the one hand, Arlene attributes the difficulties of meeting to issues of transportation, but the end of her statement suggests that there is more to agencies' resistance. As my relationship with Arlene grew, I learned that her laughter was a common response to exasperation. In this case, her laughter suggested the kinds of difficulties that people with intellectual and developmental disabilities face in seemingly simple activities, like meeting in public. The Fellowship Group—the only chapter to meet in public—thus occupies a unique position amongst the twenty groups across the state. As I detail in my narrative in the next section, the Fellowship Group offers us a new model of empowerment in which our attention centers on the ways in which the person acts in the world in the presence of others.
V. The Fellowship Group
The Fellowship Group chapter meets monthly at a local restaurant in the banquet room that is separate but still visible to other patrons. Servers and patrons often pass through the swinging doors going back and forth to the buffet. On my first visit, around thirty-five people are scattered across the eleven tables in the room. Most are African American and male; eight are white and thirteen are women, including Arlene. It's difficult for me to identify staff from self-advocates. I estimate that twelve men are self-advocates, leaving around six or seven male employees. Among the women, I guess that eight are staff. Most of the women with disabilities, all except one, sit at a corner table (along with female employees working with them). The evening is split in two: the monthly business meeting occupies the first thirty minutes, which is then followed by dinner and fellowship. These two portions of the meeting roughly map on to two different models of empowerment: liberal sovereignty and Arendtian spontaneity.
During the business meeting, nondisabled staff members and advisors steer the agenda. I sit across from Mason who chairs the meeting. Mason is a young black man who wears his hat towards the back of his head so that all I can see is the underside of the cap's bill. He is soft spoken and often cuts off the end of words, making his speech difficult to decipher. Mason sits next to Bobby, an older white man and an advisor, who helps Mason move through the agenda. Bobby always asks, "Do you remember what's next?" Mason seldom remembers and so Bobby points to each line, explaining to Mason what to say. "Now ask if anyone has any new business." "New…," Mason responds, but then fails to finish the sentence. "New business," encourages Bobby.
The first item of business is calling the role: Mason points to each person in the room, asks for their name and waits for a response. Mason's voice is soft so most people do not hear him. Mason never raises his voice nor makes any other type of command to alert a table he is calling their roll. In fact, his humorous exasperation suggests that he attributes the fault entirely to others. In these cases, Bobby or someone else calls attention to the person Mason is pointing toward.
After the roll call, a staff member slowly reads the old minutes. Mostly we hear names, as the previous month's roll call provides the bulwark of the minutes. Afterwards, Mason asks Betty to give the treasurer's report. The treasurer's report unfolds like the old game of telephone: first a supervisor whispers the number to Betty's attendant, who then whispers it to Betty, who then barks out in a deep voice: "Fifty one dollars!" The attendant audibly whispers to Betty again, "And seventy one cents." But this time Betty's voice is softer, with most of the syllables inaudible, so that all we hear is, "Sevvvsssss." We may read these interactions centering on Mason and Betty positively, interpreting advisors and staff as actively encouraging their participation, or we may be less sanguine and accord professionals too much control over self-advocates' behaviors.
When old business moves on to October's voting registration event, we see traditional forms of democratic mobilization and citizenship that buoys empowerment as sovereignty. Tonight's meeting is just two days after the 2008 presidential election and Arlene asks how many people voted. Five or six people raise their hand. They agree that last month's mobilization efforts went well, that they should do it again and that several people had registered and voted for the first time.
Power dynamics between advisors, staff and members reemerge around new business and self-advocates' sovereignty stumbles. Arlene proposes moving December's meeting to a community center in order to have a dance with a D.J. with an admission charge of $10. When the vote for the dance is about to begin, a black man from the corner asks if the dance will cancel dinner at the buffet. From the way in which advisors and staff fail to address fully his concerns, I speculate that he is a member rather than a staff person. When the vote commences, it is altogether disordered. Mason asks for a show of hands for people in favor of the dance, but only a few people assent. Bobby and Arlene then tell Mason to ask instead if anyone opposes the dance. This time, no one says anything and the measure passes. The vote left me unsatisfied as advisors and staff clearly shut down dissent. After the meeting, the same disgruntled man continues to press his concern to staff members.
When the meeting seems about to adjourn, Bobby reminds Mason to ask a final time, "Any new business?" Behind me, a black man sitting at a table raises his hand. Bobby points this out to Mason who then gives the floor to the man. "Yeah, I got new business," he says loudly, "Barack Obama is our new president!" Suddenly, people laugh, clap and holler in delight, thus giving the closing of the meeting an exuberant edge.
In many ways, we can see traditional accounts of empowerment: interest in voting, recent presidential election, the different appointed officers and the protocol of the meeting. However, in other ways members of the Fellowship Group fail to achieve sufficient sovereignty to achieve requisite levels of empowerment. Mason was unable to lead the meeting and only mimicked the words of Bobby. Nondisabled advisors and staff held most of the discussion of new business. We might ask, referring back to our traditional model of empowerment, if members understood themselves as political, if they understood their rights and responsibilities and if they situated themselves within a broader movement of disability rights activism. The Fellowship Group seems steered by a few cognitively able white advisors and staff members surrounded by passive, mostly nonwhite, support staff and disabled clients. The meeting, however, constituted a relatively short part of the evening; the dinner and fellowship that followed consumed the rest of the night.
Significantly, this portion of the evening occurs once the advisors leave. As people finish dinner, and Arlene and Bobby left, a pattern of movement and laughter travels in the room as more people finish eating, leave their seats and visit one another. The room grows louder, including the staff. The absence of advisors and the fluid movement of people all suggest to me the ways in which hierarchies of authority relax during dinner and individuals more freely shift in relation to one another.
The talk of the upcoming dance overtakes a table, with one man loudly boasting that he is "the best dancer in the room." Women staff members tease him to dance, but he protests: he won't dance without his dancing shoes and without music. Across the room, a young slender black man wearing all black and a black cap takes up the challenge. Positioning himself at the center of the room, he faces a group of male staff members who loudly encourage people to dance. The slender man stands and faces the taunting crowd, perfectly still for a moment, but then his body slowly slides into dance: with his right hand on his chest, his feet move in a series of stationary steps. Suddenly, he twists his left foot around his right and gives a smooth and slow pirouette. Returning to his initial position of facing the raucous male crowd, he slides the thumb and finger of his left hand across the brim of his hat, signaling his big finale. The crowd erupts! Women and men cheer as he turns and walks proudly back to his table.
Amid much laughing and clapping, the crowd turns their attention to the man who has forgotten his dancing shoes. "Show us your moves! Just one!" He protests, but before he gets the chance to dance, the man all in black returns to his position and begins dancing again, this time incorporating more moves from his body. Another man, who has been sitting quietly in the corner, gets up. This is Stan, who had introduced himself to me earlier in the evening. Stan is a short middle-aged white man, wearing a fanny pack under his round belly and a permanent pinched smile on his face. Stan stations himself and controls the room's attention. He copies the young black man's moves: holding his arms bent close to his waist, he turns in a slow circle, smiling the entire time. At the end of the rotation, the people in the room, including myself this time, cheer and laugh. Stan sits down, but his dance triggers more opportunities of performance as more and more people begin to dance: a young man in blue, Mason, and the man in black again dance. Each is its own performance as no one dances at the same time.
Dancing encapsulates Arendt's description of political action: it is public, spontaneous and plural. Simi Linton (2007, 150-154) and Rosemarie Garland-Thomson (2007, 120-122) both describe the empowering dimensions of dance for people with disabilities. Dance accomplishes important tasks for disability rights activists. It models alternative modes of connection between persons detached from cognitive capacity; it expresses a kind of freedom not well encapsulated by the sovereignty model of empowerment; and it expresses an enjoyment of life often assumed impossible for people with disabilities. Finally, dancing is a disruptive tool as it momentarily suspends behavioral norms in public, a suspension that Arendt would embrace.
Around this time, a woman leans over to me across the aisle and says, "When the meeting's over they like to have fun!" While her use of "they" prickles of paternalism, it is also misleading. The fun is contagious, as enjoyment spreads across clients, employees and even the servers who bustle in and out of the room. Beside me, a table of staff and self-advocates surpass all others in their boisterous fun and good-natured teasing. When Liz, a white female staff member, gets up to get dessert, a server grabs her silverware. The women and men wait, holding back their giggles, and watch Liz as she piles her plate with dessert, all the while with no realization that the waiter has taken her fork and spoon. When she returns, they all break out in laughter. Liz smiles and simply unrolls the set of utensils placed beside her.
This small and silly interaction in fact shows the fluidity of power hierarchies as a nondisabled white staff member became the target of teasing. Teasing—around either Liz or dancers—occurs across race, gender and status as staff members tease self-advocates and self-advocates tease staff. Teasing shares Arendt's dimensions of action: it occurs between people in public and it is spontaneous. Like dancing, it joyfully plays with power.
As the room grows louder and men continue to dance, I look through the glass at a white couple seated at a booth on the other side of the restaurant. They stare with blank faces into our room, quietly looking on to the boisterous fun. I wonder what they think: did they realize that the men dancing are intellectually disabled? Would it have made a difference? Or do they perceive the self-advocacy activities not through the lens of disability, but rather through the narrative of race? Arendt helps us here, too, as she argues that the consequences of action are unknowable and unpredictable.
By the end of the evening, patrol of behavior ceases, until the young man in black begins a new dance, but this time faces me, only a few feet away. As his hips begin to gyrate, a staff member intercedes. "That's enough," says Sue, "go sit back down." He takes a few steps to his table, but before he can sit down, he turns around and resumes his position, now turned the other way towards the men. He gives the same hip-shaking move, but without reproach. Some part of me—my whiteness, femininity or outsider status—triggered control in an otherwise spontaneous climate.
Around this time, the people at the boisterous table beside me prepare to leave. The "best dancer" has still not shown us any moves. Together the four of them stand in front of Liz and Sue's table and talk.
"Tell them what you've been doing," says Monique.
"Ka-ra-tay," the man says, slowly with a smile, emphasizing the "tay" at the end of the sentence.
"Show us some moves."
The man at first stands still, as if he would refuse this too, but then suddenly his right arm stabs sidewise into the air. The women erupt in laughter. Once they leave, I linger for a few minutes and then say good-bye to Sue and Liz. Like Arlene, they invite me to attend the Christmas party and to "bring some friends."
As I make my way to the exit, the group of four still talks about ka-ra-tay. The women tease the man to show some more moves, and then suddenly, the man's posture slides down, his back tilts towards the floor, and — kick! — he stabs the air with his right leg. More laughter thunders out as we all make our way out the door. I wave good-bye as I walk towards my car while people still howl with laughter behind me and more people begin practicing ka-ra-tay. For me, watching self-advocates powerfully kick the air seems a fitting finale to the evening, like a swift kick in the face to any ableist stares that may lurk in the corners of the restaurant.
Despite my enjoyment of the evening, I initially worried about the efficacy of the Fellowship Group. My expectations had been forged through observations of national conferences in which participation was more formal, organized and plainly legible within a sovereign model of liberal political identity. The Fellowship Group lacked many of these markers of political advocacy: it seemed disorganized, controlled by neurotypical advisors and more interested in social connections rather than political transformation.
We see, however, all dimensions of Arendtian action as public, plural and spontaneous. Together, staff members and self-advocates challenged norms of sovereign comportment and they did so in public, in the presence of other restaurant patrons who had no expectation of sharing their dinner with self-advocates. While difficult to measure or decipher through sovereignty, this portion of the evening felt empowering. As my involvement with People First continued—volunteering in the office, facilitating other chapter meetings and organizing events—I began to realize the fullness of the Fellowship Group's success.
Understanding this success requires an appreciation of the difficulties involved in coordinating self-advocacy events in the region, some of which I learned from the December dance, the event so anticipated during November's meeting. The dance was held at a local community center and, due to the center's calendar, could not be held on a Thursday. When I arrived, many of the people from November's meeting were missing. According to Arlene, many of the agencies decided to forego the dance due to the change in time and location. Dancing in a low-lit backroom of the community center—without many of the members and without an audience like the restaurant afforded—I started to understand why one man had mounted so much resistance at the November meeting. Poorly attended with no outsiders as an audience, the dance lacked the same enthusiastic energy as the regular monthly meeting.
The conspicuous absence of people with intellectual and developmental disabilities from events planned around their presence became a recurrent theme in my observations. In March of 2010, I attended the annual spring conference: an event initially started by self-advocates as a way to counteract the encroaching dominance of professionals at other events. Nondisabled professionals, however, engulfed the attendance and proceedings, leaving self-advocate organizers feeling like tokens at their own creation. The last panel, "Self-Advocates Speak Up!," was the only panel organized by and for self-advocates; it was meant to rally support and empower members, but only ten people showed up: four self-advocates, three paid advisors, me, and my two children. Sitting around empty tables, the gifts that self-advocates opened did little to cheer the advisors. Likewise, the Roll-a-thon event I helped organize in May 2009 had roughly fifteen attendees. Four of us were employees or volunteers; the rest were members of our families. Not a single unpaid member attended.
Other than the Fellowship Group, I also attended chapter meetings held in a local sheltered workshop. By going to the workshop, Arlene averted some of the difficulties of transportation, but the spontaneity and plurality that had been so evident at the Fellowship Group was entirely absent. Staff members did most of the talking; members, many of them nonverbal, generally acquiesced with any of Arlene's suggestions. I began to realize why meeting in public was so crucial: by altering the location, the Fellowship Group helped shift the general pattern of power between members and staff.
These lackluster events clearly point to the near or total absence of people with intellectual and developmental disabilities as a significant obstacle to self-advocacy. The hidden or private nature of these events echo Arendt's fear of the fate of obscurity in which people "'pass away leaving no trace that they have existed'" (55, quoting Barrows). Having only observed one regional self-advocacy office, I cannot offer insight as to how widespread these difficulties are to the national self-advocacy movement. My point is not to mark the failures of this struggling self-advocacy office, but rather to highlight the success of the Fellowship Group in its ability to gather people together for spontaneous action. Arendt gives us a way to celebrate the Fellowship Group and to want more from empowerment. Rather than a state of mind, empowerment is a way of living in the world with others. This fuller account of empowerment already inheres in the self-advocacy movement as practiced by the Fellowship Group. Arendt gives us a way to articulate it.
VI. Conclusion: The Subject of Disability Studies
Demanding that self-advocates cultivate a sovereign identity to be empowered disqualifies some people with intellectual and developmental disabilities from self-advocacy group membership and fails to capture the richness of self-advocates' political action. Revising our vision of empowerment better encompasses all people with disabilities and better reflects the actual activities and struggles of self-advocacy groups. Empowering people in traditional sovereign modes of political subjectivity will remain essential in a liberal democratic polity, but we can recognize and value other modes of political participation.
Additionally, revising our understanding of political subjectivity and action promises to push the field of disability studies to be more critical of itself as an emancipatory project. Lennard Davis recently argued in The Chronicle that disability remains peripheral to academe because it contradicts "the neoliberal belief in the free and autonomous subject." 5 As such, people with disabilities jeopardize a fictive regime that idealizes our capacity of control. Critical disability studies scholars thus seem perched to erode these liberal myths and, yet, here too we glimpse the familiar countenance of control. Anne Mollow argues that critical disability scholars—including Davis—promote an "excessive or insufficiently critical reliance upon identity" and, by extension, neoliberal identity politics (2004). Mollow rightly worries that the discipline will neglect issues of class and difference, but she fails to add that this model of identity—that grounds politics in the recognition of oneself as a member of an oppressed class—directly disempowers some people with more profound forms of cognitive impairment as it divests them of any capacity for political action.
Arendt's theory of action offers us an alternative wherein we can jettison the fantasy of the fully sovereign subject while also retaining a rich theory of democratic participation. Of course, my use of Arendt is highly selective and much remains in her work to digest for a project on disability and democracy. This is only a beginning, but as Arendt pushes us to see, human action is distinct because of its ability to forge new beginnings. For Arendt, "It is in the nature of beginning that something new is started which cannot be expected from whatever may have happened before" (1998, 177-178). No doubt, shirking the sovereign subject is extremely difficult because it thoroughly saturates our discursive terrain. For this reason, grounded theory offers disability studies scholars a methodological way forward, as it begins with lived experience to generate theory. Studying the self-advocacy movement promises to launch new beginnings, if we begin thinking and acting spontaneously together.
- Aldridge, Jo. 2007. "Picture this: The use of Participatory Photographic Research Methods with People with Learning Disabilities." Disability & Society 22(1):1 - 17.
- Arendt, Hannah. 2003. Responsibility and Judgment. New York: Schocken Books
- Arendt, Hannah. 1998 . The Human Condition. Chicago: The University of Chicago Press.
- Aspis, Simone. 1997. "Self-advocacy for People with Learning Difficulties: Does it have a Future?" Disability & Society 12(4): 647-654.
- Bochner, Arthur P. 2001. "Narrative's Virtues." Qualitative Inquiry 7(2): 131-157.
- Brewster, Stephanie J. 2004. "Putting Words into their mouths? Interviewing people with Learning Disabilities and Little/No Speech." British Journal of Learning Disabilities 32(4): 166-169.
- Buchanan, Ian and Jan Walmsley. 2006. "Self-Advocacy in Historical Perspective." British Journal of Learning Disabilities 34(3): 133-138.
- Chapman, Melanie, Susan Bannister, Julie Davies, Simon Fleming, Claire Graham, Andrea Mcmaster, Angela Seddon, Anita Wheldon, and Bridget Whittell. 2012. "Speaking up about Advocacy: Findings from a Partnership Research Project." British Journal of Learning Disabilities 40(1): 71-80.
- Charmaz, Kathy. 2006. Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Thousand Oaks, CA: Sage Publications.
- Davis, Lennard J. 2011. "Why is Disability Missing from the Discourse on Diversity?" The Chronicle. Accessed on April 4, 2012 from http://chronicle.com/article/Why-Is-Disability-Missing-From/129088/#disqus_thread
- Garcia-Iriarte, E., J. C. Kramer, J. M. Kramer and J. Hammel. 2009. "'Who Did What?': A Participatory Action Research Project to Increase Group Capacity for Advocacy." Journal of Applied Research in Intellectual Disabilities 22(1):10-22.
- Garland-Thomson, Rosemarie. 2007. "Shape Structures Story: Fresh and Feisty Stories about Disability." Narrative 15(1): 113-123.
- Glaser, Barney G. and Anselm L. Strauss. 1967. Discovery of Grounded Theory: Strategies for Qualitative Research. New York: Aldine de Gruyter.
- Goodley, Dan. 2001. "'Learning Difficulties', the Social Model of Disability and Impairment: Challenging Epistemologies." Disability & Society 16(2): 207-231.
- Jarman, Michelle. 2005. "Resisting 'Good Imperialism': Reading Disability as Radical Vulnerability." Atenea 25(1): 107-116.
- Kennedy, M. J. 1996. "Self-determination and Trust." In Self-determination Across the Life Span: Independence and Choice for People with Disabilities, edited by Deanna J. Sands & Michael L. Wehmeyer (Eds.), Baltimore: Brookes: 37-49.
- Linton, Simi. 2007. My Body Politic: A Memoir. Ann Arbor: The University of Michigan Press.
- Lotan, Gurit, & Ells, Carolyn. 2010. "Adults with Intellectual and Developmental Disabilities and Participation in Decision Making: Ethical Considerations for Professional—Client Practice." Intellectual and Developmental Disabilities 48(2): 112-125.
- Mollow, Anne. 2004. "Identity Politics and Disability Studies: A Critique of Recent Theory." Michigan Quarterly Review 43(2).
- Nonnemacher, Stacy L. and Linda M. Bambara. 2011. "'I'm Supposed to Be in Charge': Self-Advocates' Perspectives on Their Self-Determination Support Needs." Intellectual and Developmental Disabilities 49(5): 327-340.
- Roets, Griet and Dan Goodley. 2008. "Disability, Citizenship and Uncivilized Society: The Smooth and Nomadic Qualities of Self-Advocacy." Disability Studies Quarterly 28(4).
- Roets, Griet, Dan Goodley and Geert Van Hove. 2007. "Narrative in a Nutshell: Sharing Hopes, Fears, and Dreams with Self-Advocates." Intellectual and Developmental Disabilities 45(5): 323-334.
- Roets, Griet and Geert Van Hove. 2003. "The Story of Belle, Minnie, Louise and the Sovjets: Throwing Light on the Dark Side of an Institution." Disability & Society 18(5): 599-624.
- Shildrick, Margrit. 2000. "Becoming Vulnerable: Contagious Encounters and the Ethics of Risk." Journal of Medical Humanities 21(4): 215-227.
- Slater, Jenny. 2012. "Self-Advocacy and Socially Just Pedagogy." Disability Studies Quarterly 32(1).
- Snyder, Sharon L. and David T. Mitchell. 2006. Cultural Locations of Disability. Chicago: University of Chicago Press.
- Sprague, Joey and Jeanne Hayes. 2000. "Self-Determination and Empowerment: A Feminist Standpoint Analysis of Talk about Disability." American Journal of Community Psychology 28(5):671.
- Stancliffe, Roger J. 2001. "Living with Support in the Community: Predictors of Choice and Self-Determination." Mental Retardation and Developmental Disabilities Research Reviews 7(2): 91-98.
- Suddaby, Roy. 2006. "From the Editors: What Grounded Theory is Not." Academy of Management Journal 49(4):633-642.
- Townson, Louise, Sue Macauley, Elizabeth Harkness, Andy Docherty, John Dias, Malcolm Eardley, and Rohhss Chapman. 2007. "Research Project on Advocacy and Autism." Disability and Society 22(5): 523-536.
- Tsuda, Eiji and John Smith. 2004. "Defining and Organizing Self-advocate Centered Groups: Implications of Survey Research on self-advocacy groups in Japan." Disability & Society 19(6):627 - 646.
- Wehmeyer, Michael L. and Susan B. Palmer. 2003. "Adult Outcomes for Students with Cognitive Disabilities: Three-Years After High School: The Impact of Self-Determination." Education and Training in Developmental Disabilities 38(2): 131-144.
- Wyre Forest Self Advocacy and Beth Tarleton. 2005. "Writing it Ourselves." British Journal of Learning Disabilities 33(2): 65-69.
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