Abstract

Postmodern thought is increasingly critical of foundations central to modern, positivist research into the lives of people labeled as having so-called developmental disabilities and mental retardation. This approach has brought about changes in how developmental disability is both understood and, ultimately, created. Responding to what has been called the postmodern turn, some disability studies scholars are choosing to represent their work in alternative textual formats, including poetry and fiction. These texts, representing multiple subjectivities, offer ways to explicate, problematize, and reconstruct new ways of understanding so-called developmental disability that are complex and plural. Examples of alternative research texts are provided from a recent qualitative research project with self-advocates and their construction of choice, control, and power.

Editor in charge: Steven J. Taylor

The Hmong have a phrase, “hais cuaj txub kaum txub,” which means “to speak of all kinds of things.” It is often used at the beginning of an oral narrative as a way of reminding the listeners that the world is full of things that may not seem to be connected but actually are, that you can miss a lot by sticking to the point, and that the storyteller is likely to be rather long-winded. (Fadiman, 1997, p. 12)

There is no thinking that does not wander, and any serious work should have etc. in its title and honestly state that it will not stick to the topic. (LeDoeuff, as cited in Bach, 1998, p. vii)

First Canto: Prologue

Summer at the university. A stuffy borrowed office on the fifth floor of the education building. Blazing sun outside, already hot at 10 a.m. In front of me, a blank computer screen. I sweat. I think of stories that want to be told, poems that want to written, about the lives of people with whom I've been spending time, people who call themselves self-advocates. I think about how to describe the shape of what I am wondering about—this thing called developmental disability. I think about how to tell a story of a different kind of research story to editors, reviewers, and (other) readers. I play with a pencil. I look out the window. I open my thermos and pour a cup of coffee.

For about a year and a half, across the seasons, I had worked on a qualitative research project in Vermont, beginning with a pilot study in the spring of 1998 (P. Smith, 1999a). My intention through it all was to give voice to the words, actions, and stories of persons labeled as having developmental disabilities.

(When considering terminology, I want to problematize the terms developmental disability, self-advocate, and disability, both in this text and in common use. Like formal notions of mental retardation, the phrase developmental disability has roots in a medical model of disability, and privileges some at the expense of others. Although it is preferred by some self-advocates and family members as being less stigmatizing than other language, it remains caught in a web of professionalized power. The word development comes from the French voloper, which means to wrap up [Moris, 1975]. Coupled with the prefix de-, meaning reversal or undoing, the word can be read as a commentary on the way people with disabilities have been “unwrapped” from the center of cultural terrains, removed to the margin; and the prefix dis- in disability makes the same lingual move: it “is the semantic reincarnation of the split between disabled and nondisabled people in society” [Linton, 1998, p. 31]. The notion of self-advocate is a complicated cultural metaphor. It implies another, principal form of advocacy [that is often paternalistic], of which self-advocacy is merely a variant [H. MacDuffie, personal communication, October 12, 2000]. When used by professionals like myself, the term becomes a euphemism for “person with a developmental disability,” and can become a way of taking power away from people. When claimed by people who call themselves self-advocates [often persons who have been labeled in some way], it becomes a term with clear political tones, a way to claim disability in the way race is claimed by those who call themselves Blacks or African Americans. Although I want my usage to be more in alignment with that kind of claim, it can never be entirely so because I do not make a claim to be a self-advocate.The word disability is itself problematic. As Kennedy [2000] noted, clumping people under this general label prevents people from having power in their lives, authorizing professionals and others to maintain and extend their own power. I have used these phrases and others like them in the text because new metaphors, ones that more explicitly highlight their cultural baggage and that resist reification, have not yet been developed. They should be read with a clear understanding of their inherent political and value-laden nature.)

In listening to the words of these individuals, I started to get some beginning understanding about how they create and control supports, make decisions, and express power. I spent most of my time with people who call themselves self-advocates (described by professionals as individuals who developmental disabilities who speak for themselves, all receiving a variety of supports from different nonprofit agencies in Vermont, getting to know them and listening to their stories. I also talked with family members, direct support providers, and system administrators.

I began to feel that the stories that I had been given could not be written about in standardized academic language. It seemed to me that the stories themselves simply would not stand for it. I tried writing them in traditional research forms, but they kept changing from those into the things they themselves wanted to be. I also realized that part of the reason these stories wanted to be written in alternative forms has to do with who I am, and how I imagine the world to be. After a while, I stopped fighting them, realizing that I would need to write them in the form of fiction, narrative poems, and short stories.

I walk around the office, looking for fresh air in this warm room. Under the window is a dictionary lying open on a round wooden table (Oxford English Dictionary, 1971). At the bottom of the right column on the left page is a word: scherzando. The dictionary tells me that scherzando is an Italian word used to describe to a performer the mood or tone of a musical passage. It tells the performer to be playful, literally to leap with joy. That is a good word, I think to myself. As a collaborative composer of music-stories, that word could give both me as performer–author and those unseen, imagined performer–readers, a hint about how to approach this text, how to co-write it with me.

Back at the computer, I stare at the screen, thinking of another word: montage. In the world of film, montage is the arrangement of seemingly disparate shots used to create new meanings, a greater whole. A filmic version of dialecticism, synergy. Montage is another good word to describe this text. Denzin (1995) said that “a written text becomes a montage (and a mise en scene), a meeting place where ‘original’ voices, their inscriptions (as transcribed texts), and the writer's interpretations come together” (p. 13). As a metaphoric filmmaker of words and stories, I would tell viewer–readers to think about the montage of stories as they watch this word-movie, putting together new meanings from separate pieces.

So. Here's a word-movie, a music-story. Interspersed throughout the text are clips of the stories I was given. Call the whole, montage. Call it scherzando. Call it fiction, poem, manifesto. Sing it.

Second Canto: Song of Words

 
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Third Canto: Words and Knowledge About Developmental Disability

…the way things are said is more important than the possession of truths. (Rorty, 1979, p. 359)

A few years ago, I was absolutely stunned by an article in this journal. Danforth's (1997) seminal text on hope, progress, and postmodernity opened up a door for me to new landscapes of language and analysis about so-called “developmental disability.” He and others have begun to apply this kind of culturally critical language to their research (Danforth & Navarro, 1998; Peter, 2000; Ronai, 1997). It has been used to understand and evaluate the political meaning of research in the field of developmental disabilities (P. Smith, 1999b). More recently, it spawned a useful, spirited debate about the role that postmodern inquiry can or should play in this field (Danforth, 2000; Gelb, 2000; S. Taylor, 2000). These ideas and debates led me to rethink what I have taken for granted about the work that I do as a researcher and practitioner. I started to read farther afield, to see how this and other “illegitimate” thinking might be applied. I began to think about words and how they construct knowledge.

I began to realize that we—all of us—draw pictures in our minds of the worlds around us through the use of maps. We draw mental maps of even the most elusive and ephemeral qualities around us. McKnight (1995) said that “each of us has a map of the social world in our mind” (p. 161). Maps can be about not only geophysical worlds, but also about the many worlds of relationships and ideas. Sometimes we draw these maps graphically, but more often we use words to describe them. Using this metaphor of cartography, I saw that educators, researchers, and other cultural workers have begun to draw mental retardation and developmental disability as social constructions instead of objective realities (some examples include Biklen, 1998; Bogdan, 1992; Bogdan & Taylor, 1994; Danforth & Navarro, 1998; Ferguson, 1994; Furney, Glesne, Kervick, Pillai, & Smith, 1998; Kliewer, 1998; Kliewer & Drake, 1998; Neath, 1997; S. Taylor, 1996; Trent, 1994). Some have taken a further step, portraying developmental disability and mental retardation themselves as metaphors (Biklen, 1998, 1999; Bogdan & Taylor, 1994).

I came to recognize that the way we use language—the words we make and the order we put them in—tells us about how we understand the world (Warren, 1997). Understanding words about developmental disability as culturally created metaphors gives us opportunities for figuring out who creates disability, where it is created, who is supported by it, and how to deconstruct it. This, it struck me, was a terrain that providers, family members, professionals, and self-advocates alike would be interested in exploring, in order to create truly inclusive communities.

I also saw that the production of knowledge—and I thought specifically about the knowledge of developmental disability—and the language used to re-produce it, is compartmentalized by artificial, academic boundaries (Ellis & Bochner, 1996; Sibley, 1995). Some words can be used only by certain people, and as a result of speaking them, the importance and validity of those persons is accentuated (A. Smith, 1997). Different words, spoken by Others, cannot be heard or spoken at all.

(Other is a complicated word, one I do not want to simplify with a direct and linear definition. Glesne [1999] used it as a postmodern alternative to words such as “research participants, respondents, interviewees, and researched” [p. xii]. Guba and Lincoln [1994] defined it parenthetically in the plural as “nonmainstream lives” [p. 106]. Jones and Ball [1995], in discussing the work of Michel Foucault, suggested that the Other “comes in many forms: the alien, the strange, the criminal, the incomprehensible, the pathological, and most particularly the insane. . . . Otherness is the antithesis of reason and epistemology seeks to subject it to reason. This subjection takes the form of scientific inquiry and diagnosis of the irrational subject, whether it be the criminal, the insane, the diseased, the child, or the woman” [p. 47]. I like all of these thoughts, and I like the thought that a definition of the word is inherently [or at least ideally] multivocal, and multisensed.)

Danforth (1997) pointed out some of the ways that rhetoric employed in understanding developmental disabilities serves this purpose, effectively excluding what he calls “non-science voices” (p. 105). Fields of “applied” knowledge in which this rhetoric is employed have held positions of enormous power over the lives of people labeled as having disabilities (Donnellan & Leary, 1995; Heshusius, 1995; Kliewer, 1998; Linton, 1998; Linton, Mello, & O'Neill, 1995; Sleeter, 1995; Wendell, 1996).

It occurred to me that words are used to create the territorialization of knowledge, especially when they are jargonate. This language protects professional understandings in the field of rehabilitation and developmental disability services from infection by viral outbreaks of critical thought, especially when spoken by self-advocates. In addition, “compartmentalized knowledge, kept within secure boundaries, gives power and authority to those who peddle it” (Sibley, 1995, p. 122). Developmental disability researchers and practitioners are kept safe in their positions and roles by not exploring terrains outside the boundaries of their field; and people with disabilities, with their families, are kept securely outside the boundaries of communities of which they seek to be a part.

An important tool used by those (often unintentionally) guarding knowledge borders is the creation of idea taxonomies and hierarchies of knowledge. Some knowledge—or more precisely, some knowledge expression—is deemed of greater value than other knowledge expressions: “other knowledge is considered ‘lower’ if expressed in different idioms, for example, the writing of journalists but also writing in unconventional academic styles” (Sibley, 1995, p. 122). Knowledge presented in the conventional written forms and codes of modernist positivist research, forms typically used in representing developmental disability research, is given greater cultural value than knowledge presented in other forms, such as poetry, drama, fiction, and the like.

Bernstein (1997), a poet, noted that there is a “growing discrepancy between our most advanced theories and institutionally encoded proscriptions on our writing and teaching practices” (Paragraph 2). Even as postmodernist ideas and disability studies approaches make entry into the field of developmental disabilities, research continues to be represented in conventional formats. Bernstein called this discrepancy “frame lock” and said that it is a result of “ideational mimesis,” “an often repressed epistemological positivism about the representation of ideas” (Paragraph 6). He pointed out that in the same ways that some of what has been foundational to modernist thought—notions of transparency and neutrality—has been critiqued, so too has the notion that writing can essentially duplicate those qualities been confronted and disproved.

With Bernstein (1997) and Linton (1998), among others, I began to wonder how to undo frame lock in research with people labeled as having developmental disabilities. I quickly realized that to do so would entail a new kind of writing, a new kind of thinking, a new kind of knowledge-making.

Fourth Canto: Lemmings

 
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Fifth Canto: Crisis and Release

Today, the modernist, pragmatic method of knowing is under assault. The very methods of knowing are themselves no longer certain. Modernism's pragmatism falters at that precise moment when the phobia for truth confronts the truth of the simulacrum; the truth that says there is no truth. Suppose, then, that nothing is any longer certain, except uncertainty. If this is so, then science and ethnography are no longer certain, only two among many discourses about reality. (Denzin, 1995, p. 16)

Progress is a myth (Danforth, 1997). Objectivity turns out to be an illusion. For some, this shifting epistemology is a crisis. What was once stable is now always on the move. Nothing can be taken for granted.

Perhaps, though, this is a crisis only because of metaphor. Epistemology is supposed to be a “foundation”: unmoving, concrete, stable, never-changing. Where I live, in a sagging farmhouse on a hill in Vermont, I have a different understanding of foundations: They are more like boats, floating in an ocean of soil. The foundation under my old house shifts and creaks every winter, weighed down from above by several feet of snow and pushed up from below by inevitable frost. The porch out front heaves up every February, making it hard to open the kitchen door. There's a wall near my woodstove that has a long crack in it because it moves a little differently than the others. No matter how they're built, foundations shift and move, whether by frost or tectonic action.

Maybe it would be better to think of epistemology as the small sailboat I go to when I escape to Maine, sliding up and down the waves. If I tie the boat up on a beach in a spot with a long tide fall, I am apt to find the boat high and dry the next day. As a researcher standing on the boat of inquiry, if I try to stand with my legs straight and unbending, as I do on dry land, I will fall over. I need sea legs. I need to follow the motion of the water underneath me, my knees working as shock absorbers. If I think of epistemology as a boat, then the postmodern turn looks less like a crisis and more like a release. I am no longer tied up to the dock. I can set sail and let the current, tide, and wind take me along, seeing many new things from many new vantage points.

This strikes me as an especially advantageous way of thinking about inquiry into developmental disabilities. The postmodern moment gives us an opportunity to explore how and why and for whom we have created and inscribed developmental disability. It gives us an opportunity not just to include people with disabilities in our work, but for them to direct and control research, to have choices in their supports, to be emancipated participants in their communities, and to gain power in their lives.

Griffin (1997), a feminist, has marked language as being in a similar position. The correspondence theory of truth, the idea that words describe and denote a separate, objective reality, is seen as no longer valid. As a result, the place that words and language hold in our lives can be seen as problematic, even tragic. On the other hand, Griffin said,

The dependency of words on each other, and finally the inability of language to determine truth, makes language dependent on other forms of knowledge, and other modes of existence; it signals an end to the only partly submerged goal of language to master reality, and it also sets language free from that goal. Language can then be explored as another mode of existence. Real in itself. A different territory. (p. 218)

The validity of alternative research forms in disability studies and research is not made to refer to the “reality” that they are thought to describe, but rather to the words that they speak. Words become the essence of research, acting as real, not just metaphoric, blood (P. Smith, 1997).

Sixth Canto: John's Song

 
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Seventh Canto: Stories and Poems

It is a way of making these lives available to others in a form that differs both from the extended narratives of heroic biography or case history on the one hand and the lost individuality of the survey on the other. (Bateson, 1989, p. 16)

Over the last decade, as I read the body of research writing about developmental disabilities, I started to feel uncomfortable about the way it presented itself as getting to some kind of singular truth, getting to what is real, about people and systems of supports. It began to be clear to me that much of this research was devoted to simplifying, to reducing complexity in hopes of increasing understanding (P. Smith, 1999c). For those making inquiries into what some call “developmental disability,” the impact of such research representation is the making of knowledge that captures only part of a human experience. The potential understanding any of us have of the idea of developmental disability is limited if only one way of representing and creating knowledge is used and given value.

This felt dangerous to me because the lives of self-advocates and their allies that I was coming to know were anything but simple, unable, and unwilling to be coded in numeric or other terms. Instead, I yearned for a way of representing research—knowledge-making—that could focus on and exemplify in the writing itself the complexity and sometimes conflicting natures of people I was meeting. I wanted to get to what some researchers have called a “plural text” (Ellis & Bochner, 1996, p. 15), one that would represent, in both form and content, the “subjects” (perhaps co-creators is a better term) of inquiry not as singular things but as multiply faceted, ever-changing, active, and responsive beings-that-don't-stand-still. And so it was that I started to imagine what the representation of inquiry into the lives of self-advocates and their allies would look like if it were, in poetic terms, “a polyphonic, heteroglossic, multigenre construction” (Rose, 1993, p. 218).

I also began to understand that a life and its written representation can never be the same (Glesne, 1999). In terms of my own research, the descriptions that I wrote of the lives of self-advocates could never be the same as their actual lived experiences. Unavoidably, whatever I or other researchers say about an Other always passes through the filter of our own experience, picking up other flavors as it goes. These flavors are not abhorred, at least by some researchers, but celebrated. Like the multiple tastes within wine, coffee, or chocolate, many simultaneous flavors enhance experience rather than detract from it.

Qualitative researchers have begun to move across the ideological divide from objectivity to subjectivity. Some disability studies and postmodern researchers, seeking a way out of what is seen as a simplifying binary of objectivity/subjectivity, look to avoid this dualism by assuming multiple subjectivities. One anonymous reviewer, responding to an earlier version of this text (and so this text itself becomes multiple, nesting within responses of reviewers and the counter-texts of myself as author), noted poetically that “the call of subjectivities (plural, positioned, multi-voiced, contingent, inconstant) is the hope of pluralistic community and idiosyncratic individuality, of a particularity, of experiences, of hope, of suffering” (Anonymous reviewer, personal communication, August 22, 2000). This described, for me, a vision of an inclusive community of researchers, self-advocates, support providers, family members, and others—a community that finds troubling the power ensconced in developmental disability research journals and texts that deny access to the writing and reading of self-advocates.

I was also troubled by the place of truth in disability and other research and, ultimately, about the difference between fiction and nonfiction. From a positivist perspective, writing that does not make some claim to truth (as does most modernist research), that sees instead a world of multiple, even conflicting, truths (as is true for postmodernist perspectives), must be inherently untrue, must portray a kind of fiction. I came to a stance more like that of popular novelist King (1989), one of whose characters, a writer, talks about “the almost unconscious act of fictionalizing one's own life” and that “the overflow of make-believe into one's own life seemed to be an almost unavoidable effect of storytelling” (p. 271). Acceptance of a perspective in which there are multiple truths, in which I expressed multiple subjectivities, meant that the line in my research between fiction and nonfiction, truth and non-truth, became a slippery hog, refusing to hold still, refusing to be held. By calling my research-writing fiction, I knew I would confuse some researchers and practitioners. To call it otherwise, though, would seem false to what I thought postmodern disabilities studies research could be.

I began to recognize that all of what we call research—whether critical, interpretivist, positivist, or postmodern—was in some sense a kind of story, a tale, a way to organize our thinking in order to describe it to others. Put another way, philosopher C. Taylor (1989) said that “we grasp our lives in a narrative” (p. 47). The narratives that make sense to us are stories and experiences with which we can empathize. Stories of research that do not make sense to us are ones that do not fit within our frame for understanding the world. A postmodern story about research that calls all research a kind of fiction, a story, will seem oxymoronic to some, yet as metaphors for research and knowledge-making, they have equivalent, if conflicting, truth value.

Stories and poems, rather than denying the multiple, complex, and chaotic natures of human existence, assert them, place them at the center (Kociatkiewicz & Kostera, 1999). In poems and stories, the relationship between writer and written, researcher and researched, knower and known is a relationship that is never taken for granted. This quality of not being taken for granted was one that I searched for in my representation of the lives of self-advocates. Philosopher Gadamer (1997) described that quality in his criticism of the poetry of Celan:

I do not believe one should think of a You in these poems only when they speak of a You, or that one should think of the poet only when he says “I.” Both seem wrong to me. Might not an I say You to itself? And who is I? I is never simply the poet. It is always also the reader. (p. 118)

Poems are about relations, connections, what is between, what Gadamer (1997) called “the event of the word” (p. 120), not the poles of artist and audience. Poems imply audience; the act of being a poet necessitates the act of being a reader. That relationship, and the relationship between myself and Others, were ones with which I was most interested.

Gadamer (1997) also noted that “all that matters is what the poem actually says, not what its author intended and perhaps did not know how to say” (p. 68). This frees readers to create new meanings, some perhaps in conflict, understanding that “poetics aims at inviting the reader toward reading, interpreting and co-authoring the text” (Kociatkiewicz & Kostera, 1999, p. 42).

Poets have begun to recognize that “the binary opposition between poetry and science is an arbitrary one” (Wersher-Henry, 2000), in the same way that disability studies theorists have critiqued the separation between science and nonscience (Linton, 1998). These boundaries are disappearing in the same way that fog lifts out of spruce woods to reveal the brilliant blue sky of a clear autumn day. Some researchers have begun to outline a poetics of inquiry (Sandelowski, 1994). Such a poetics has the potential for exploring the cultural construction and reification of developmental disability, of understanding of how we as members of our society inscribe disability on the bodies and lives of others. Inquiry into the lives of self-advocates takes on at least two tasks: explicating cultural metaphors and creating new ones. The process of creating new metaphors of what some call “developmental disability” deconstructs old ones, unpacking their social baggage for a new journey.

Lather (1995), a researcher who worked with women living with HIV/AIDS, talked about wanting in her work to “question taxonomies” (p. 58). Her intent, I think, was to explode the way science creates hierarchies of knowledge, hierarchies of people, and hierarchies of privilege. I saw an affinity between this and my own work with self-advocates, for I had accepted that it was essential that the stories I described should, as critical theorist Giroux (1997) said,

acknowledge and critically interrogate how the colonizing of differences by dominant groups is expressed and sustained through representations: in which Others are seen as deficit, in which the humanity of the Others is either cynically posited as problematic or ruthlessly denied. (p. 156)

This, then calls for not just a poetics of inquiry, but also a poetics of politics (Sultana, 1995). Some in the fields of inquiry about developmental disabilities separate ideology and science (Mulick, 1990). I had come to believe the opposite—that they are inseparable and that research is never value-free, nor should it be (Maguire, 1996; P. Smith, 1999b). Research is an inherently overt political act, should be understood as such, and should be evaluated (at least in part) as being so. Rather than denying that it has no point of view, researchers investigating the lives of self-advocates should be explicit about its value.

Increasingly, qualitative research is being represented in alternative textual formats, as poetry (Glesne, 1997; Glesne et al., 1998; P. Smith, 1999d; Weems, 2000), as readers' theater (Donmoyer & Yennie-Donmoyer, 1995), as fiction (Stewart, 1989), and in texts that intersect multiple practices (Jipson & Paley, 1997; Lather & Smithie, 1997).

I also found examples of alternative representations of the lives of persons labeled as having developmental disabilities in short stories (Angrosino, 1998) and poetry (Blatt, 1970, 1973, 1981). Ronai (1997) provided an autoethnographic account of her life as the daughter of a woman with (so-called) mental retardation; and there are representations of people with disabilities in pop music, including the Beatles (1967), Mary Chapin Carpenter (1994), and R.E.M. (1988).

Still other works that might be considered alternative, in that they would not otherwise be accepted as research texts, are autobiographical narratives written (sometimes with the support of others) by people labeled as having developmental disabilities, including Grandin (1986, 1995), Johnson (1999), Crossley and MacDonald (1984), Sienkiewicz-Mercer and Kaplan (1989), and Williams (1992, 1994, 1996). Also not otherwise accepted as research texts are the autobiographical poems of Josephson (1997) or Sellin (1995).

These other voices, not accorded the privilege and status provided to academic researchers, are perhaps more pointed and critical because they have nothing to lose:

 
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This is the kind of poem, telling a story that is “pissed-off” and not afraid to admit it, that needs to be authorized and privileged as authentic, legitimate research (P. Smith, 2000) 

Eighth Canto: Who's In Charge?

“Ah, my dear,” sighed Mr. Obscenity, sitting upright amid the damp rumpled sheets and patting Miss Flatface on the thigh. “I'm afraid you've had it. One must never think that no other life than this is possible. All other lives are imaginable, possible, even probable.” (Sontag, 1978, p. 62)

So, with others, I began to look around at what has been called the crisis of representation, to find new ways of understanding the lives of labeled Others through alternative textual practices. Sitting in that borrowed office, analyzing the interviews and observations I had done, I realized that I needed to move beyond typical analytic and writing practice in developmental disability research. I would need to develop and create text acts outside of typical academic prose: poetry, fiction, drama, even performance and visual arts. I also began to recognize that the analysis of the stories that I had been told would be a bit unconventional.

For I had come to realize, with Richardson (1994), that the process of writing itself is a form of inquiry, a way to understand the world. The analytical process would be not just through a conventional procedure of pulling together themes from a variety of stories, a variety of data trails. It would also be a process of writing down those stories; the process itself of writing them down, of telling those stories, would also be a way of understanding them. I would not be able to know what they meant until I had written them.

The title of Merwin's (1993) poem “Writing Lives,” proclaims the inscription of the lives of people through research texts:

 
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Given what I have come to know and believe about research, this seems as useful an epistemological wondering as any written by academic social scientists and disability researchers. Some researchers try to understand through an objective stance, forgetting the ways that the “distance” provided by objectivity is metaphoric, forgetting that such distance is not value-neutral. The alternative described by Merwin is partly about the importance and celebration of subjectivities (“water looking at water”). It is also partly about the difficulty at looking at subjectivities (how can water look at itself, especially when it's invisible, even to itself? And even what we use to describe multiple subjectivities, words, invisibly inscribe!), partly about seeing the Self in the Other (and the place between, at which “there is no distance”), perhaps even something about rejecting the negative value sometimes placed on “going native.” This poem is not a finished statement of epistemology; it is a question, a work always in progress.

Poet Codrescu (1986) reminded me that “the word,” William Burroughs said, “is a virus” (p. 194). Words infect us with culture (Dawkins, 1991). I wanted my research representations of the lives of self-advocates to be an infectious cultural agent that would begin to change how people think and act and understand what they call “developmental disability.” This viral infection would work in a way similar to the way one sometimes experiences a sense of contradiction while looking at a work of art, the way the contradiction between the multiple meanings present in the work of art (of whatever kind) creates new ways of thinking about and being critical of the world (Palermo, 1999). This is the kind of text that, in the language of Lather (1995), “fosters brooding” (p. 48).

Danforth (1997) has warned us eloquently about the kind of illegitimate narratives that I began to write and that appear in this text: “One who fails to tap into the language of modern science may be unconvincing” (p. 105). I discovered in writing these cantos, though, that I did not have much choice in the matter. I was not exactly in charge here. Authorial autonomy? A ridiculous notion. I just followed behind the stories, picking up the pieces.

Ninth Canto: Epilogue

CUT TO borrowed office. Haggard researcher sits in front of a computer, thinking and staring. On the computer table to his right is a book, Bogdan and Taylor's (1994)  The Social Meaning of Mental Retardation, page 77, to which he glances.

SLOW ZOOM IN on the open book until it more than fills the screen. Words are highlighted as we read along:

“The word ‘retarded’ is a word.”

The camera TILTS UP to the computer screen, on which an Internet Web page is displayed (Chopin, 2000). Again, the words are highlighted:

It is impossible, one cannot continue with the all powerful Word, the Word that reigns over all. One cannot continue to admit it to every house, and listen to it everywhere describe us. . . . The Word …has permitted life to lie …it creates the inaccurate SIGNIFICATION …The Word is useful no more …

SLOW ZOOM OUT to full shot of office. Researcher slowly disappears from the room; computer slowly disappears; books, plants, desk all slowly disappear until nothing is left but an empty room. CAMERA PULLS BACK through window, still slowly ZOOMING OUT, to shot of the building on a pleasant summer day, PULLING BACK to helicopter shot of campus with many small people walking around, PULLING BACK to shot of the entire city, and finally, FADE TO BLACK.

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Author notes

Author:Phil Smith, EdD, Director, Vermont Self-Determination Project, Weeks Building, 103 S. Main St., Waterbury, VT 05641. ( psmith@ddmhs.state.vt.us)