Abstract

The grand narrative of modernism is a dominating story with profound sociopolitical implications in the lives of people with the label of intellectual disabilities. In this article, we throw light on the life stories and interpretive theories of self-advocates, which usually remain hidden between the story-lines of life. Professionals in the field are being pressed to address self-advocates' existential challenges and move us, as theoretical allies, towards deeper conversations about disability theory. Here, we search for a useful theoretical framework to support the circulation of their wisdom and knowledge. We experiment with poststructuralist and feminist pointers and, in particular, some of the notions of Deleuze and Guattari's (1987) rhizome.

Constructing Alternative Narratives in the Self-Advocacy Movement

The international social movement of self-advocacy of people with the label of intellectual disabilities is testimony to a determination to oppose how they have been defined and treated in society (Dybwad, 1996; Dybwad & Bersani, 1996; Goodley, 1997, 2000; Williams & Shoultz, 1982). The first author of this paper got to know leading and respected self-advocates within and across Our New Future (the first self-advocacy group in Flanders, the Dutch speaking part of Belgium) through volunteering as an advisor over the past 9 years, which could be seen as a very natural way of discovering everyday life in collaboration and comradeship. She worked as an ally with a group of self-advocates on several projects (see ONT, 2002, 2005, 2007), one of which was the composition of their book One for All—All for One! A Joint Fight for Human Rights (ONT, 2002). In this book, self-advocates articulated their life stories and disclosed their worldly wisdom in dialogues. Sharing stories, hopes, fears, laughter, tears, dreams, deeds, and bitters and sweets, a fresh and intensely felt participation of the present in self-advocates' grassroots network, they invited us to map the multiplicity of their powers and resistances (Roets, Van de Perre, Van Hove, Schoeters, & De Schauwer, 2004; Roets, Van de Perre, Van Hove, Schoeters, & De Schauwer, 2005). Our research activity created many empowering possibilities and provided us with opportunities to better understand individual and collective politics of resilience and resistance of self-advocates (Goodley, 1999, 2001; Taylor, 1996). In this paper, we lay bare some of the storied dialogues with Pat, Iris, and Marie (pseudonyms), extracts from One for All (ONT, 2002), and encounters with People First.

Sources of Inspiration

In our work, we drew upon various theoretical perspectives. Our aim was to contribute to critical disability studies in anti-foundational times, with a sensitivity to discourse, politics, and culture (Van Hove, Roets, & Goodley, 2005). Our theoretical resources included social constructionism, postmodernism, poststructuralism, and feminism. Our main inspiration came from our engagement with critical pedagogy from which our political praxis grew (Van Hove et al., 2007). Hybrid cross-fertilizations of these theoretical resources with our participation in the living revolution of the self-advocacy movement shifted us towards deeper conversations about theory (Goodley & Roets, 2007). However, we cannot map the many differences in these sources of inspiration but, instead, focused here on some interesting commonalities. For us, all of these perspectives share a sensitivity to discover lost glimpses of the humanity of people with disabilities and contextual counternarratives in a disabling society. Our major hope is to create vital opportunities for readers to look at people with intellectual disabilities who survive at the edges of a culture (Angrosino, 1998; Johnson, 1998; Roets & Van Hove, 2003; Smith, 1999; Taylor, Bogdan, & Lutfiyya, 1995).

A Multiplicity of Interpretations

We hope that our plain stories, in a nutshell, have the detailed complexity to spin webs of connections and catch people's hearts. In A Thousand Plateaus, Deleuze and Guattari (1987) inspired us to create plateaus, flows of energy, and intensities in the simplest of ways. As they noted: “The multiple must be made, not by always adding a higher dimension, but rather in the simplest of ways, by dint of sobriety, with the number of dimensions one already has available” (p. 7).

Stories are able to stir up a multiplicity of interpretations (P. Ferguson, Ferguson, & Taylor, 1992; P. Ferguson & Ferguson, 1995) as fragments of knowledge to make sense of and link together. Some might surprise you as small and shy, like a nervous child that suddenly breaks into laughter or tears when you least expect it, some might bully you into submission, some might knock you out straight up. Once you let stories go, they might lead lives of their own. Pat and Iris, a close couple who were self-advocates, sprightly told us stories about their everyday life. Pat and Iris share the sweet and the bitter with each other.

Pat: Now I fear not any one any more!

Iris bursts her love into laughter: “Oh you boaster!”

Pat, serious: Yes, sometimes am frightened. They'll plunder me. My home. My chopper. My money. When I get up to something. When I've spent much money, they'll rob me.

[They had fought for a life together. About caregivers, Pat said he did throw three of them out of his house. They acted like “big boss.” He even had to fight one of them to the bitter end.]

Pat: Yep! One, had to dust 'er down. Had to get her by the short hairs. Well yes, did not listen to me! Not with me! Not in my house. There I am big boss. I'm not to get crushed! I just tell them where to stay. They can get lost! (ONT, 2002, p. 171)

However, we are painfully aware that it might be a risky adventure to leave these precious stories up for grabs and power takeovers, open for interpretations of any kind. Deficit and pathological thinking surrounds people with intellectual disabilities (Goodley, in press). The ways that tales are told and translated may be shaped by the desire of influential gatekeepers to accept or reject them as “true” and “valid” accounts (Chappell, 1998). Self-advocates here gave voice to lived knowledge, which tends to not be observed, silenced, discredited, disqualified, and/or excluded in current social sciences (Booth, 1996; Booth & Booth, 1996; Goodley, 1996; Roets & Goedgeluck, 2007). This might be why the raison d'être of people with intellectual disabilities is stifled; why they might feel like alienated and brainwashed “others,” not belonging, caught in a politics of segregation and exclusion (Taylor & Bogdan, 1989). In our eyes, Pat and Iris highlight the politics of professionalization that tend to control their everyday lives. In this frame of reference, it might be impossible to discover the subtle sense of self-advocates' creative social worlds and nomadic subcultures (Braidotti, 1994; Roets, Reinaart, & Van Hove, in press). Too often, we have experienced that the wisdom of self-advocates is buried under expert truth, power, and knowledge, and it disappears in a power nexus that operates through taken-for-granted systems of professional discourse (Tremain, 2005). The cult of professional expertise compels people to believe the voices of authority unquestioningly, as a totally coherent system of necessary knowledge within a precise territory. The human psyche itself has become a possible domain for systematic government in these vocabularies (van Drenth, in press).

We read and translated their stories in a different light. Through the turbulent process of composing the life stories (Roets et al., 2004, 2005), we believe that we have captured the often hidden and resilient culture of people with intellectual disabilities (Goodley, 1999). We experienced self-advocates as active social agents through the production of new, hybrid discourses and the creation of discursive and cultural change (Corker & French, 1999; Phillips & Jorgenson, 2002). We believe that the personal, even intimate stories of our comrades deserve to be seriously listened to in their cultural contexts. Their life stories may well deserve and even require reflection and theoretical analysis in order to avoid misinterpretations and objectification in professional discourse. Furthermore, living processes of transformation of self-advocates' selves—here cloaked in Pat and Iris' multiple sites of oppression and resistance—expressed the necessity to refigure epistemological configurations and to reinvent theoretical practice (Braidotti, 1994, 2002). How can we, as theoretical allies, possibly support and strengthen self-advocates' scope for epistemological innovation?

In this article, we first emphasize the grand narrative of modernism as a dominating story with profound sociopolitical implications in the lives of self-advocates. We have mapped and critiqued some personal harms that the politics of professionalization have visited on these individuals in the present. Second, we searched for a useful theoretical framework to support the circulation of self-advocates' wisdom and knowledge. We experimented with poststructuralist and feminist pointers, in particular with some of the notions of Deleuze and Guattari's (1987) rhizome: (a) multiplicity and meaning, (b) heterogeneity and rebellion, and (c) a-signifying rupture and power takeovers. In the end, we discussed some reflections.

“Intellectual Disabilities” as a Grand Narrative of Deviance

Grand narratives refer to all-encompassing, foundational theories central to modernism (Lyotard, 1979) that characterize popular and professional thinking on “disability” as an ideological and constructed category (Danforth, 1997; Hughes, 2002; Perry & Whiteside, 2000). Corker and Shakespeare (2002) referred to modernity as the social institutions, belief and value systems founded on assumptions about the unity of humanity, based on the idea of progression and “normalcy” (p. 2). Knowledge is regarded as ultimate truth, a monologue spoken in the voice of the single frame of expert professionals (Skrtic, 1995, p. 36). To classify intellectual disabilities in terms of a grand narrative of deviance, lack, and tragedy assume it to be logically separate from and inferior to “normalcy” (Goodley, 2001). This may be seen in the growth of interventionist social sciences over the past century (Danforth, 1997). Medical insights into the nature of intellectual disabilities instigated a process of categorization of individuals (van Drenth, in press). People were considered to be “abnormal” and deviant from the abstract standard of “normal man”; this supposed intellectual inferiority of “savages” and women was an important drive for moral treatment into institutions (van Drenth, in press). People's culture was defined for them as a professional construct rooted in the eugenics movement, used to justify institutionalization, sterilization, and other repressive policies (Taylor, 1996). The policy of institutional segregation was reinforced by extreme measures, such as sterilization to control people's fertility and sexuality as rampant and dangerous and to prevent any kind of marriage, sex, and parenthood (May & Simpson, 2003). We believe that those policies depend in many senses upon eugenic and biological determinations (Baroff, 2000; Kerr & Shakespeare, 2002) and are motivated by a desire to prevent society for people with intellectual disabilities, who were thought to be a threat to the social order (Marks, 1999; Park & Redford, 1998). In Belgium, there is a strong historical evidence of the implementation of these repressive policies, such as massive institutionalization and sterilization politics. Catholics, many times the Orders of the Brothers of Love and the Sisters of Love, initiated asylums at the end of the 19th century, with an expansion of institutionalized care throughout the 20th century (van Drenth, in press). It is beyond question that those ideas were not simply temporary in nature; they continue even today to be powerful in their social implications (Roets, Adams, & Van Hove, 2006). Expert professional discourse enjoys a status of ultimate truth and a means of ideological domination (Danforth, 2001, 2004; Peter, 2000). The ways in which contemporary ideas about women and men with intellectual disabilities operate as taken-for-granted “truths,” suggest that it is mainly important to trace back and reflect upon social and ideological influences that culminate in contemporary reproductive technologies (Tremain, 2005). The grand narrative of modernism is a dominating story with profound personal and political implications in the lives of people so-labeled who are at risk of getting programmed by social service programs (Danforth, 1997, p. 94). Here, we map, illustrate, and critique some sociopolitical effects of the politics of professionalization in the present time. The shared lives and story of Pat and Iris, however, reflect just some of the personal harms that existing grand narratives have visited upon them (Silvers, 2002).

Pat and Iris live in a small village near Antwerp. The bus stops underneath their belfry. Pat stays await, a bear of a fellow in full swing. He holds my arm: “Come home with me!” In the shopping street he stops before a store-window. They sell baby clothes and layettes. “Lovely cradle,” he longs. I have to ponder over a conversation between Rob [leading self-advocate] and me [Griet, advisor] with those two people. Rob had a question in store for them while dialoguing about “human rights.” Rob got a surprising response. I wrote it down because I got crushed with the injustice done to Pat and Iris.

Rob: Tell me about something related with what you want, but you can't have.

Pat: Children.

Rob, wants to bone this out: But when is Iris going to have children?

Pat: Caregivers say we're not ought to. And her father's grumbling about us.

Iris confirms: I'm not ought to says me dad. That's it.

Rob turns to Iris: Yes well, but who must have that little one? You or your dad?

(a profound silence reigns—Iris tries to hold back her tears—) Pat reacts: I can not have any more children, as her womb is gone.

Iris gives us a warm welcome at home. They invited me—dinner and a bed is waiting for me. They love to foster someone—as a talent of both of them. (ONT, 2002, p. 153)

The very idea of what it means to be human but to be labeled with intellectual disabilities is thrown open to questioning. This focus on the social threat that people with intellectual disabilities pose for society through their capacity to have children objectifies self-advocates and denies them to be grown-ups with dreams and desires (Braidotti, 2006). In the same vein, the process of professionalization resulted in forms of institutionalized care in Flanders. Today, there is still an oppressive culture of well-established, traditional care, which results in a subtle system of professional and voyeuristic control that dominates the lives of people with intellectual disabilities (Dewaele & Van Hove, 2005; Roets & Van Hove, 2003). Pat and Iris jointly escaped a life in a cold institution and have chosen to share warmth in their own house (Johnson & Traustadóttir, 2005; Traustadóttir, 2006). They live in a cluster of little connected houses that offer supported living:

Pat, who has some black pages in his past, holds some bitter memories about a time when he was a little lad: I went to special school from the outset. Always special. Only special kids. Impaired kids. Special school passed. But then big lads teasing me. That was difficult. Man! I was terrified. Really terrified. They frightened me. I ran out of school.

Iris is familiar with his past. She complements with hers: I was 21 and quit special school. And then, had to move into institution. And work into a day care centre. Also working in institution, in the groups. A whole caboodle it was! Well we raised the devil there! We couldn't cook our own dinner. We were only allowed to brew some coffee! And there we met. I had an affair with someone else first, for 2 years. But he was not my true love! Lived in the same group. Didn't work out. I wanted to live together. But his father said no. I couldn't get over that! And then got to know him. That's a rogue! I love him with all my heart. (Iris smiles). Yes dear? We were dating and went steady soon. And then moved out!

Pat, who fosters his memories—how he lives together now with his woman means sharing warmth in their own house; life suits him well: Makes a big difference compared with life before! Feel fine now. Love living together with her. I'm a free man. I have all what I long for. Eat what I want to eat. No compulsory hours of in and out institution. Just our own house. We decide for ourselves. And above all: I live with her!

Iris (smiles): And I live with my Pat. Living together for twelve years now! Before we were living in a big institution. Both there. Getting to know each other over there. Cold place there. That was a tough time for me! But let them boss about me? No way! (ONT, 2002, p. 156)

We believe that these chilling realities, such as silenced sterilization and institutionalization, are not simply artifacts of the past but should be relevant for both present and future (Johnson & Traustadóttir, 2005; Roets et al., 2006; Traustadóttir, 1990).

Rhizomatic Circulation of Self-Advocates' Knowledge

Over recent years, we have explored the relevance of postmodernist and poststructuralist feminist disability theory for its emancipatory potential (see Roets et al., 2006; Roets & Goedgeluck, 2007; Roets, Reinaart, Adams, & Van Hove, in press; Roets, Reinaart, & Van Hove, in press), reflecting on close collaboration with self-advocates connected to Our New Future (Schoeters et al., 2005). At the core of oppressive practices, we have often witnessed views of adults with intellectual disabilities that objectify and validate them as powerless and story-less (Traustadóttir & Johnson, 2000, p. 14). Conversely, we attempted to identify the creation of spaces that circulate alternative narratives of the “selves” of self-advocates. We explored the theoretical lacuna left by those who adopt the production of fixed, generalized, context-free facts about intellectual disabilities and interventions (Hughes & Paterson, 1997; Marks, 1999). Proponents of postmodern positions base hope on the creation of conversations in which intellectual disabilities as a standard and overriding definition of self can be contested and more positive personal identities, roles, and activities constructed (Danforth, 1997, p. 94). Postmodernists invent modes of observing, expressing, and connecting that aim at shattering the bonds imposed by the rules of routine discourse to foreground what commonplace ideas obscure or conceal (Silvers, 2002, p. 228). Lyotard's (1979) radical postmodernism creates the possibility for all human beings for escaping from the confines of modernism and of re-imagining the world:

The nature of [modernist] knowledge cannot survive unchanged within this context of general transformation [human circulation] … We can predict that anything in the constituted body of knowledge that is not translatable in this way will be abandoned and that the direction of new research will be dictated by the possibility of its eventual results being translatable. … The “producers” and users of knowledge must now, and will have to, possess the means of translating into these languages whatever they want to invent or learn. (p. 5, italics added)

In other words, we need to expose ourselves to dialogues with self-advocates as producers and users of knowledge, which allows us to challenge and rethink the existing grand narrative of intellectual disabilities. To do so, we have adopted a poststructuralist interpretation of self-advocacy as a dynamic process of interdependency (Goodley, 1998), discourse, and action (Roets, Reinaart et al., 2007). In search for a useful theoretical framework to capture these processes, we found ourselves experimenting with concepts of poststructuralists and feminists as lines of possibility. The work of the French poststructuralists Deleuze and Guattari (1987), in particular, may help us to understand the life worlds of adults with intellectual disabilities (Grosz, 1994, p. 165). To do so, we will analyze some of their concepts, most notably the rhizome: (a) multiplicity and meaning, (b) heterogeneity and rebellion, and (c) a signifying rupture and power takeovers.

In what follows, we have disclosed in detail the recording of jointly constructed, lived experiences with Pat, Iris, and Marie. Marie is a born “femme fatale” and defined herself as straatluuper (“daisy on the road,” see Roets & Goedgeluck, 2007). Just like her friends Pat and Iris, she mastered breaking rules, norms, and stereotypes and pushing her plans through. At that time, Marie was threatened by professionals who wanted her to have a forced, nonvoluntary sterilization. Marie made a lot of phone calls to the first author, reporting that her mother was told by her personal supporter, the psychologist, the director of the service on which she depended to organize her housing and the gynecologist that a sterilization was a strict necessity and had to happen as soon as possible. The first author asked Marie whether she wanted to figure out what the possible dilemmas and consequences were concerning a sterilization instead of just giving consent in an uninformed way. The first thing we decided to do that week was to go to Antwerp to have a serious discussion with Pat and Iris. After the collaborative writing of the book One for All—All for One! (2002) with Our New Future, Marie was very well aware of the devastating impact of Iris' unwanted sterilization on Pat and Iris's life (also see Roets et al., 2006). These encounters shed light on possibilities for epistemological rebellion illuminated by some of Deleuze and Guattari's (1987) concepts.

Multiplicity and Meaning

Deleuze and Guattari (1987) opened up possibilities by stating that the system of modernist, binary thought has never reached an understanding of multiplicity. In terms of modernist binaries,

what we have before us is the most classical and well reflected, oldest, and weariest kind of thought. Nature doesn't work this way: in nature, roots are taproots with a more multiple, lateral, and circular system of ramification, rather than a dichotomous one. (p. 5)

Lather (2005) provided background for the value of multiple discourses to destabilize master regimes of truth and knowledge (Denzin, 1997, p. 14). To get a grasp of “intellectual disabilities” in all its complicated and contradictory meanings on the level of social theory and to consequently counter the grand narrative of deviance, lack, tragedy, and repressive professional practice, we found the rhizome a helpful visual metaphor:

The rhizome operates by variation, expansion, conquest, capture, offshoots. … The rhizome pertains to a map that must be produced, constructed, a map is always detachable, connectable, reversible, modifiable, and has multiple entryways and exits its own lines of flight. In contrast to centred systems with hierarchical modes of communication and pre-established paths, the rhizome is an a-centred, non-hierarchical, non-signifying system … defined by a circulation of states. (Deleuze & Guattari, 1987, p. 25)

Following Lather (1991, p. 112) the development of a mutual, dialogic production of a multi-vocal discourse can be used to challenge the cast-iron formation of expert power exercised by some professionals and to vivify the interpretation of certain phenomena, such as “intellectual disabilities” as a social, relational construction (Bogdan & Taylor, 1992; Klotz, 2004; Taylor & Bogdan, 1989). The notion of the rhizome allows us to discover subtle senses of resistance, contradictory values, political impulses, and moments of desire. We are sensitized to the multiplicity of accounts instead of claiming one ultimate, universal truth about people with disabilities (Corker, 1999; Watson, 2002). Is sterilization indeed such a strict necessity for people so-labeled? Pertinent to this question is our nonlinear discourse with multiple centers of postmodernist knowledges in which multiple voices speak and articulate their definitions of a situation (Lather, 1993, cited in Denzin, 1997, p. 14):

Pat orders diet cokes for everyone in his favorite restaurant where he has taken us; he knows that Griet Roets [first author] has diabetes.

Marie: Well doctors. For me, it's misery! Am in bad trouble too now! That women's doctor I must go right now. You know, Roets.

Griet: Do you want to tell Pat and Iris about it then?

(Marie mumbles, turns introvert, as usual when something is at her mind: silence reigns.)

Griet: Can I introduce your troubles somewhat please?

Marie: Yes Roets.

Griet: Well, Marie was forced to go to the women's doctors by caregivers and Tina [psychologist of social service]. Because they fear she'll be pregnant one day, they say.

Iris: Aye! No!

Griet: And now caregivers claim to Marie she must have a sterilization. Yes Marie?

Marie: Yes. I must do it, she says.

Iris: Me … too … sterilized. Forced. You know.

Pat (complements—sounds fuming): Marie … cannot be done! You cannot let this happen to you! They keep away from you. Keep their hands off you! Your belly it is!

(Marie keeps silent)

Griet: See Marie? Well at least, you don't have to fear what they say. You can think for yourself?

Pat comforts: Don't be afraid baby. Don't let them do that to you. Cannot. No. You boss your body. Told Iris too: boss about your own body you are! Yes Iris?

(long heavy silence)

In speaking of sterilization, these rhizomatic dialogues open the discourse: “a rhizome has no beginning or end; it is always in the middle, between things, interbeing, intermezzo. … the rhizome is alliance, uniquely alliance. … the fabric of the rhizome is the conjunction, “and … and … and …” (Deleuze & Guattari, 1987, p. 27).

Following Deleuze and Guattari (1987), theory happens in transit, moving on, passing through, creating connections where things were previously disconnected or seemed unrelated, where there seemed to be nothing to see (Braidotti, 2002). They are interested in what theory enables us to do. Discourses are modes of action, practices we perform to facilitate or enable other practices, ways of attempting to deal with and transform the real (Grosz, 2005, p. 158). The dialogue can be understood as critical knowledge and epistemological conversations (Haraway, 1991, p. 191): theory-making in terms of the capacity to draw connections, stress sensitivity, and share differences (Braidotti, 2002). Theory does not express, translate, or serve to apply practice; theory is practice (Deleuze, 1986; St. Pierre, 2004) as an instrument that multiplies potential. Gergen (1994) argued that “reality” can be seen as approached and constructed through the interplay of different territories of knowing. Further, he spoke of “good action theory” as “generative theory,” which offers new epistemological perspectives. Reason and Torbert (2001) advocated a “turn to action,” in which we study our multiple selves in relation to others, with a focus on inquiry into the present relationships among the “in-here” (subjective life worlds), the “among-us” (intersubjective, interactional life worlds) and the “out-there” worlds we take as our reality. In conversation, self-advocates work out epistemological grounds on which to base reactions to professional discourse and fuel new forms of social action (Bochner, 2001, p. 141). Critiques that are wisely taken into serious analysis on a continuous basis invite people to look for more than the answers offered by the dominant, professional discourse (Taylor, 1998, cited in Smith, 1999, p. 72).The following dialogue is a good illustration:

Griet: Are you afraid, Marie?

Marie (heavily): Yes! But what is that women's doctor going to say to me again? Yes am worried sick. For one thing I'm terrified. One thing. A dubious bloke wanted to … he wanted to … intimidate me. Threaten me to … to rape me. (becomes silent)

Griet: But do you think it necessary to be sterilized therefore?

Pat (heavily): No! Just stop! Caregivers threaten you too. Caregivers no boss about you!

Griet: I agree. Certainly caregivers can't boss about you. That is your decision to make. Marie?

Pat: Yes! They did it on Iris too. Caregivers done. No Iris asked. They decide. They can't!

Marie: Yes but in fact, if I must do it? They say so! Then I have to, you know! I know a couple. Living in their house. She had a baby in her belly. They got just thrown out of their house. Caregivers did this. Because she got pregnant. I don't want to get kicked out of my own house because I get pregnant! But I don't want to get cut in my belly neither [she was referring to the sterilization]. I had to go to our big boss. The director. To get reprimands. And if a shady bloke rapes me, well I have to find out myself. So says Tina [psychologist]. Reprimands I get. All the time!

Pat: (who would like to make the sparks fly): No! Caregivers are no big boss about you!

Marie: I know. But I know two girls [she names no grown-up “women,” we experience that self-advocates actually use to refer to themselves as ‘boys’ and ‘girls’] that had to do it. Our big boss said so. So the women's doctor did. If not, the director will fire them out! (silence)

From this multiplicity comes further possibilities, as we shall see.

Heterogeneity and Rebellion

Although the rhizome is multiple, it also follows the principle of heterogeneity:

Language [knowledge] is an essentially heterogeneous reality. There is no mother tongue, only a power takeover by a dominant language within a political multiplicity. Language [knowledge] … evolves by subterranean stems and flows, along river valleys or train tracks; it spreads like a patch of oil. (Deleuze & Guattari, 1987, p. 8)

Knowledge, as St. Pierre (2004) favors, is springing up everywhere, often unrecognizable to the old rules, emerging in the middle, “Where things pick up speed” (Deleuze & Guattari, 1987, p. 25). A heterogeneity of meanings gets circulated like a patch of oil through interactions between self-advocates and their supporters. These different actors interrogate positionings, expose power takeovers (Haraway, 1991), and choose different and often contradictory epistemological perspectives (Tamboukou & Ball, 2003, p. 10). Deleuze and Guattari's preoccupation with heterogeneity alerts us to those who are enmeshed, involved in these power relations who can, in their actions, their resistance, their rebellion, escape them, transform them, in a word, cease being submissive (Foucault, 1980, quoted in St. Pierre, 2004, p. 293).

Griet: I grasp you comrade. But no one can boss about you and say you must do that Marie? Did they really explain to you what it means to have a sterilization?

Marie: No.

Pat: Well, the mother gets all cut. Cut. You can't have children any more. Never mom. And not dad too. Never becoming mom. Or dad. Me and Iris, we have it. All cut out. Or they give you pills. Better.

Griet: That was what they suggested to you too Marie?

Marie: Oh, yes. Yes first they want to prick me that pill. First intent. But first we have to wait what the women's doctor says next, Tina said. And up to it now. Friday. Tomorrow yes. They say what I have to do. That's what I fear.

Griet: But … well Pat? If they force you to a sterilization. You didn't decide this for yourself then? And it means you can't have little ones any more, yes Pat?

Pat: Yes! The father of Iris decided for us!

Griet: Your father decided it for you then Iris?

Iris: Yes. Father and caregiver. Must be done, they say.

Pat: We were not saying one thing! Not allowed! Father and caregiver bossing about us! You shut up, they say. Tuff you know. Happened. Still happened. Down on me too. I went with Iris to the hospital. Been there. (he sounds bitter—silence) Marie! Don't let them do that to you!

Griet: Hmmm. (silence) Maybe you really should think over this, Marie? Because they can only let you do that if you make that choice?

Pat: Yes! I agree! No one big is boss about you. Don't be scared baby.

Such discussions can be understood as critical agency that emerges from the margins of power (Butler, 1997), which makes the subversion and redefinition of oppressive social structures possible. The experiences and wisdom of Pat and Iris prompted Marie's rebellion. After the conversation with Pat and Iris, Marie made Griet intercept the consent form for her sterilization. She overtly challenged the cast-iron formation of expert professionals, took up her freedom, and shook off the professional intrusions in her life (see Roets et al., 2006). Multiplicity of ideas created possibilities for self-empowerment.

A-Signifying Rupture and Power Takeovers

Understanding these conversations we cite as rhizomatic discourse provides space for the development of paradigmatic shifts in relation to disability (Goodley & Van Hove, 2005; Skrtic, 1995) and might be situated as “a discourse that has a great ability to circulate, a great aptitude for metamorphoses, a sort of strategic polyvalence” (Lather, 2005, p. 10). Deleuze and Guattari (1987) themselves stressed that once a rhizome has been obstructed, it risks to be all over, to loose its lines of flight:

The notion of unity appears only when there is a power takeover in the multiplicity … or a corresponding subjectification process. This is the case for the pivot-unity forming the basis for a set of bi-univocal relationships between objective elements or points, or for the One that divides following the law of a binary logic of differentiation in the subject. Unity always operates in an empty dimension supplementary to that of the system considered (overcoding). (p. 10)

The point is, do we allow ourselves to be the One with a professional master eye, that constructs binaries between us and them, that individuals without the label of disabilities do and that individuals so-labeled are done to? If you believe in ultimate professional knowledge and truth, then you might create a power takeover. The relevance of connecting activism with poststructuralist feminist disability theory lies, for us, in our belief that knowledge and truth exist, but only as they apply to specific situations with a focus on micro-operations of power and a sensitiveness to local struggles (Tamboukou & Ball, 2003). Foucault said, “I believe too much in truth not to support that there are different truths and different ways of speaking the truth” (Foucault, 1986, quoted in Tamboukou & Ball, 2003, p. 14).

A rhizomatic view opens space for raising doubts about possible interpretations and, consequently, provides a rich array of perspectives. It gives way to the positive potentials of multiplicity, acknowledges the creativity and resilience of people first. Deleuze and Guattari (1987) inspire with their idea of the a-signifying rupture:

The point is that a rhizome or multiplicity never allows itself to be overcoded, never has available a supplementary dimension over and above its number of lines … A rhizome may be broken or shattered at a given spot, but it will start up again on one of the old lines or on new lines. You can never get rid of ants because they form an animal rhizome that can rebound time and again after most of it has been destroyed. (pp. 9–10)

The self-advocacy stories we cite are resistant because they refuse to be overcoded into discourses of prevention, sterilization, and medicalization. We can live with the idea of comparing self-advocates with worker ants and their groups with extremely resilient ants' nests. Pat and Iris have to live with the idea that professionals tainted their dreams and deeds to have children. Moreover, they forced Pat and Iris to abort their little baby cat that even was no longer a cold comfort. However, Pat and Iris illuminate, no matter what history and present discourse prescribes, that people do not always inscribe the discourse (knowledge) about them (Roets & Van Hove, 2003). Now it is Pat's turn; he is the boss now and he will have chickens and more ground for a henhouse. Their words and worlds resonate to live on and invite us to revel in their courage (Danforth, 1999).

Pat nods and tells his tale seriously: Get trampled by supporters. They don't allow us to hold a dog. Here we would wish to hold a little doggy. Poke their nose in my house they do.

Iris (joins Pat:: Keeps me busy too. I had a kitten, too. Am forced to clean my house. And then control whether house is tidy. Then get a black cross [behavior therapy]. Forced to clean, otherwise my kitten gets thrown out of doors.

Pat: Yes, got kitten from my brother. We were forced to throw our kitten out of our house!

Iris: We delivered kitten ourselves. Supporter said must do so. Did not grant permission to us before she said. Our baby cat. Just doing no harm. Just sitting on our bed. We have fierce resistance. Me, my Iris, just simply called den Ben [familiar— den Ben is the head of the social service where Pat and Iris have their home]. Told him. Our kitten's gone! Supporter's guilty! He asks. Why do you want to hold it? Said: To take care. Kitten is my sweet baby.”

Pat's still fuming when reminded to it all: I snapped that busy-body's head off. Yes! We live here, we. Iris, she was in tears. Her kitten gone. Little baby kitten. But I told the caregivers: I am the boss here. I've asked permission to keep chickens. They said okay, when the boss wants to give me some ground for a henhouse.

(She {Iris} always has the last word): Hey, I do not take care for hens! Not my job! That's men's work. Yes dear?” (ONT, 2002, p. 172)

The dialogues continue. No beginning, no end; and the resistance to disablement, the rhizomatic reaction to the overcoding of disability, goes on.

Reflections

Self-advocates shared and shaped their own life wonderfully in between their hopes and fears and poignantly pointed out they had to fight against multiple oppressive, modernist knowledge systems every day (Walmsley & Downer, 1997). They were pressing us to face up to their existential challenges and to reconsider our theoretical resources. Expressions of self-advocates' activism and knowledge challenge the very meaning of modernist knowledge systems that create both a crisis and an opportunity (Skrtic, 1995, p. 25). For us, the opportunity lies in the idea that there is no single, ultimate reference for interpreting the social world (Ferguson, 2003; Ferguson & Ferguson, 1995, 2000; Ferguson, Ferguson, & Taylor, 1992). Haraway (1991, p. 191) argued that it is precisely in the politics and epistemology of partial perspectives that the possibility of relational inquiry rests, which privileges contestation, deconstruction, passionate reconstruction, webbed connections, and hope for transformation of systems of knowledge. This partiality makes it possible for previously unrecognized connections to occur in both research and theory (Tamboukou & Ball, 2003). A space is opened for the circulation of situated knowledge, located within particular communities at particular times (Gergen & Gergen, 2003). We hope to create a space where we can think and act with one another in order to multiply the levels of knowing upon which resistance can act. Hidden between the story-lines of life as it is lived, self-advocates articulate their interpretive, resistant theories that they use to make sense of their lives. Valuing what self-advocates with their allies think and know can give rise to novel, social theories of “intellectual disabilities” (Van Hove et al., 2005). We explicitly wish to make self-advocates' knowledge recognized as theoretical (Goodley & Moore, 2000). Replacing the grand narrative of “intellectual disabilities” by the boundless, infinitely particular, and endlessly becoming provides a productive site for resituating foundations for disability studies in antifoundational times (Van Hove et al., 2005).

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We express our gratitude to Steven Taylor, Rosi Braidotti, and Eric Broekaert for their inspiring comments.

Author notes

Authors: Griet Roets (Griet.Roets@UGent.be), Doctoral Student and Researcher; and Geert Van Hove, Professor of Disability Studies and Director of the Centre of Disability Studies and Inclusive Education, Department of Special Education, Ghent University, Belgium, Henri Dunantlaan 2, B-9000 Gent, Belgium. Dan Goodley, Professor, Research Institute for Health and Social Change, Division of Psychology and Social Change, Manchester Metropolitan University, UK, Elizabeth Gaskell Campus, Hathersage Road, Manchester M13 0JA