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“I am thinking that speech is asinine”: NarratingComplexities and Rethinking the Notion of“Independence” in CommunicationAlicia A. Broderick & Christi Kasa-HendricksonPublished online: 12 Dec 2007.

To cite this article: Alicia A. Broderick & Christi Kasa-Hendrickson (2006) “I am thinking that speech is asinine”: NarratingComplexities and Rethinking the Notion of “Independence” in Communication, Equity & Excellence in Education, 39:2,176-186, DOI: 10.1080/10640260600672310

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Equity & Excellence in Education, 39: 176–186, 2006Copyright c© University of Massachusetts Amherst School of EducationISSN 1066-5684 print /1547-3457 onlineDOI: 10.1080/10640260600672310

“I am thinking that speech is asinine”:Narrating Complexities and Rethinking the Notionof “Independence” in Communication

Alicia A. Broderick and Christi Kasa-Hendrickson

This article presents a narrative accounting of a critical interpretivist research study that sought to document theemergence of useful speech in participants who had previously been described as largely nonverbal. The purpose ofthis piece is to narrate this inquiry process through examination not only of our participants’ own accounts of theirexperiences but also through critical examination of the ways in which we as researchers solicit and respond to thoseaccounts. Our analytic gaze, therefore, focuses on the dialectic process through which we interactively co-constructconcepts related to disability in our participants’ experiences, alternating between narrating our own experience of thisprocess as researchers and narrating our participants’ accounts of their own experiences with this interpretive process.Discussion focuses on critique of the cultural value accorded to the notions of “independence’’ and “normalcy,’’ andon the participants’ demonstration of their own agency in the complex, fluid, and constant process of managing andconstructing, in concert with those around them, and often in the face of significant resistance to the process, their ownpositive and valued identities as competent communicators.

This article aims to offer the reader a professional“confessional’’ (Van Maanen, 1988) of sorts, ananalysis of our own somewhat humbling expe-

rience in an ongoing process of inquiry. We hope thatit may serve to illustrate the importance of listeningdeeply to one’s participants and of vigilantly questioningand interrogating one’s own positionality and underly-ing assumptions as a researcher throughout the inquiryprocess. The study described here was neither conceptu-alized nor conducted as a narrative inquiry (Clandinin& Connelly, 2000; Lyons & Kubler LaBoskey, 2002), butwe offer the reader, rather, a narrative accounting of ourown experience with a more traditional qualitative in-quiry. The data and the story we share here continue toserve as a cogent reminder to us of the impossibility ofever being completely “outside’’of dominant discourses,the necessity of persistent and ongoing critical reflectionon one’s own discursive practices, and the ways in whichthe underlying assumptions of those practices reinscribeand shape the entire inquiry process.

The broader study upon which this narrative drawswas conducted within the tradition of qualitative in-quiry (Bogdan & Biklen, 1998; Denzin & Lincoln, 2000;

Address correspondence to Alicia A. Broderick, Department of Cur-riculam and Teaching, 525 West 120th St., Box 31, New York, NY 10027.E-mail: broderick@exchange.tc.columbia.edu

Taylor & Bogdan, 1998) in disability studies (Bogdan &Taylor, 1982/1994; Ferguson, Ferguson, & Taylor, 1992).A disability studies perspective holds that disability isa socially, culturally, and politically constructed phe-nomenon, rather than an inherent characteristic of an in-dividual. Qualitative inquiry in disability studies, there-fore, generally seeks to understand the nature of thesocial, cultural, and political construct of disability byturning its gaze not exclusively upon the individualswho experience and are labeled with disabilities; ratherit focuses more broadly upon the social, cultural, andpolitical contexts and interactions within which notionsof what it means to be “disabled’’ are enacted. Descrip-tive findings from this research project have been previ-ously presented in more traditional (albeit interpretivist)formats (Broderick & Kasa-Hendrickson, 2001; Kasa-Hendrickson, Broderick, & Biklen, 2006 draft; Rubin,Biklen, Kasa-Hendrickson, Kluth, Cardinal, & Broderick,2001).

This piece aims to be more purposefully self-reflexivein nature and seeks, rather than solely to describe anddocument participants’ experiences, to narrate and illu-minate the ways in which the researchers’ own embed-ded cultural assumptions both actively frame and consti-tute the initial conceptualization of the research as well aspermeate the interpretive process of making and sharingmeaning throughout the inquiry. In this piece we focus

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NARRATING COMPLEXITIES 177

our analytic gaze not solely on our participants’accountsof their own experiences but also on the dialectic processthrough which we (participants and researchers) inter-actively co-construct concepts related to disability in ourparticipants’ experiences, alternating between narratingour own experience of this process as researchers andnarrating our participants’ accounts of their own expe-riences with this interpretive process. Thus, the primarysources of data for this piece are (a) the data gatheredthrough in-depth interviews with each of our partici-pants and (b) our own critical reflections upon our roleas researchers in soliciting and responding to that data.The data that we present in this piece initially surprisedus and required several read-throughs of our transcriptsand many subsequent conversations with our partici-pants exploring the themes illustrated herein before webegan to understand the need to broaden our own an-alytic focus—from focusing on our participants’ experi-ences as individuals, to focusing on the ways in whichtheir experiences must be understood as interdependentwith, within, and by the complex social circumstances inwhich they are enacted and experienced, including thecircumstances of the research process that we engagedin together.

By exploring the meanings that are framed andconstituted through these sociocultural interactions be-tween participants and researchers, we hope to illumi-nate and challenge the (often tacit, implied, and evenobscured) differential and problematic valuings andassumptions that inform these interactions—valuingsthat, if left unexamined, may serve to reify, legitimate,and perpetuate oppressive experiences based uponexclusionary categorical binaries (i.e., “normalcy’’ vs.“abnormalcy’’).

BACKGROUND AND CONTEXT OF INQUIRY

All seven of the young adults who participated in thisstudy and whose experiences are illustrated in this nar-rative are considered to have significant disabilities. Allhave, at one time or another, been described as “men-tally retarded.’’ All began their lives with a period oftime (ranging from 4–14 years) in which they had ac-cess to no reliable system of complex expressive com-munication. Sue Rubin, one study participant, describesher early communication in this way: “When I was hun-gry I could always express my need by going to the re-frigerator and yelling; when I was sick or cold I couldcry and hope someone could figure out my problem’’(Burns, 1997). All of the participants in this study, atsometime during their childhood or adolescent years,gained access to complex expressive communication sys-tems through supported typing, a method of enablingaccess to Augmentative and Alternative Communica-tion Systems (AACS), commonly referred to as Facili-

tated Communication (FC) (Biklen, 1990, 1993; Biklen &Cardinal, 1997; Crossley, 1994, 1997). FC is a method ofaccessing AACS used by individuals whose speech is notreliable and who experience difficulties with intentionalmovement (see Donnellan & Leary, 1995; Leary & Hill,1996) that may make the ability to point independently inorder to access a communication aide unreliable (Biklen,1993; Biklen & Cardinal, 1997; Crossley, 1994, 1997). Phys-ical support to enable the communication aide user toaccess the alphabet, symbols, words, or pictures is pro-vided at the outset of FC training but fades as the FCuser becomes more confident and competent at typing.Many people, including most of the participants in thisstudy, no longer require physical support in order totype, but may continue to need assistance from a commu-nication partner in order to stay focused and gain encour-agement (Blackman, 1999; Rubin et al., 2001; Wurzburg,2004).

Our story really begins when we first began work-ing with Jamie Burke and Lucy Harrison.1 We (the au-thors) had participated in facilitating a discussion groupof FC users in the spring of 1999. During this time, thegroup members met monthly to discuss issues relatedto supports, independence, school, friends, and other is-sues relevant to their lives. When the group decided tostop meeting due to summer vacations, Jamie and Lucyexpressed an interest in continuing to meet in order tohave conversations about and to work together on theirprocesses of learning to type independently of physicalsupport. We (the authors) offered to facilitate their on-going discussions as focus group sessions throughoutthe summer and, at that time, invited Jamie and Lucyto engage in these focus group discussions as part ofparticipating in a research study with us. We first em-barked upon this inquiry in an attempt to documentand better understand the ways in which individualswho typed via FC were developing “independence incommunication,’’ which we conceptualized at the timeas the process of fading physical support and learn-ing to type reliably without any physical facilitation atall.

During the initial summer focus group sessions, wesat in the dining room of the Harrisons’ home on Satur-day mornings and shared bagels and coffee as we chattedand videotaped the process of Lucy and Jamie’s compo-sition of conversation through typing. We focused on anumber of guiding questions in our early interview pro-cess, including: (a) What strategies supported increasingphysical independence in typing? (b) How was the pro-cess experienced by Jamie and Lucy? and (c) What didthis increase in physical independence mean for themin their lives? We sought to document on videotape thestrategies that Jamie and Lucy and their facilitators cre-ated to fade physical support in their typing, while so-liciting through conversational interview their thoughtson the process and its meaning in their lives.

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178 ALICIA A. BRODERICK AND CHRISTI KASA-HENDRICKSON

However, during that first summer of data collectionwith Jamie and Lucy, we noticed that in addition to thisincrease in physical independence, each of them wasalso beginning to use spoken language in increasinglycomplex, novel, and useful ways. Lucy had always inte-grated some speech into her typing process—includingsaying words and letters aloud as she typed them (Watts& Wurzburg, 1994). During the focus group sessions,however, we noticed that she was using her speech innew and different (to us) ways—including actually say-ing words and phrases aloud before she typed them,self-monitoring her own typing process through speech(i.e., saying aloud, “Fix that speller!’’ and then indepen-dently backspacing to correct spelling or typographicalerrors), and reading aloud whole sentences and para-graphs from the computer screen after she had typedthem.

While it was very exciting to us to observe and doc-ument Lucy’s ever-expanding use of speech, we wereperhaps even more excited to observe Jamie just begin-ning to imitate what Lucy was able to do, beginning withwhispered letters (and occasionally words) aloud aftertyping them. We sat in silence around the table, strain-ing to hear the first letters and words Jamie whisper-ing aloud as he typed. Our eyes frequently met, waitingsilently in eager anticipation as he read more and morewords aloud, trying to contain our excitement and notsomehow inadvertently disrupt this breathtaking pro-cess as it unfolded. This boy who we knew and under-stood as a boy who generally did not speak (other thanto recite titles or scenes of dialogue from favorite sciencefiction films) was reading aloud. This was so excitingto witness. And we felt a strong sense of privilege andgood fortune that we were there to hear and see him doso.

Jamie: “I am Lucy’s protege. I am here to learn to speakas others.’’

These observations led us to expand the scope and focusof the inquiry, and to conceive of the notion of “inde-pendence in communication’’ somewhat more broadly,encompassing not only typed expression but also in-creasing independence in spoken expression as well.Thus, our earliest conversations focused on issues re-lated to the construct of “physical independence’’ in typ-ing, our videotapes of these sessions document a pro-cess whereby both Lucy and Jamie were integrating moreand more speech into their communication process; con-sequently, the content of our questions and discussionsshifted to explicitly talk about what was happening withtheir speech as well.

The FC discourse community is a rather small andintimate one, and while subsequently attending confer-ence presentations both given and attended by FC users,we noticed a number of other FC users who were not

only making progress toward physical independence intheir typing but who also were beginning to use moreand more speech in the context of composing their typedlanguage. Thus, our remaining five participants—BlairBrown, Tyler Fihe, Nathan Guzman, Sue Rubin, andFranklin Wilson—were all recruited to participate in thisstudy due to their observed or reported progress in theirability to use spoken language in increasingly complexand useful ways (though each of them was working onand making progress toward physical independence intheir typing as well). For each of our participants, thisexpansion of spoken expression occurred within the con-text of using FC as a primary method of access to typedexpression.

At the time of initial data collection, all of our partic-ipants were in inclusive academic settings with nondis-abled peers (with the exception of Nathan, whose formaleducational placement was a self-contained special edu-cation classroom with part-time academic instruction ina general education classroom with nondisabled peers).Nathan and Jamie were middle-school students; Tyler,Blair, and Franklin were high school students; and Lucyand Sue were high school graduates who were matricu-lated students taking college courses.

NESTED STORIES: OURS AND THEIRS

Clandinin and Connelly (2000) discuss the complexprocess of working within what they describe as the“three-dimensional narrative inquiry space,’’ and theydescribe themselves as working always “in the midst,’’as existing “in the middle of a nested set of stories—oursand theirs’’ (p. 63). We have constructed our findingsas just such a “nested set of stories—ours and theirs.’’We organize and present our findings around three ma-jor themes that emerged from our analytic process—thefirst and third themes narrate our (researchers’) experi-ences with the interpretive research process; the secondsection narrates our construction of participants’ experi-ences and interpretations as they have related them tous. We have thus nested “their’’ story within “our’’ storyand hope to illustrate the ways in which our own expe-riences, positions, and assumptions as researchers nec-essarily shaped the entire inquiry process, as well as thedialectical ways in which our participants’ stories chal-lenged and reshaped the ways that we came to under-stand, interpret, and engage in that inquiry. We narratethese intertwined stories through our exploration of thefollowing themes: (a) “Jamie’s talking!’’: Rethinking ourown privileging of speech and our linear conceptualiza-tion of “progress’’ (our story); (b) “I want to say I amtreated better when I type’’: Notes on identity manage-ment (their story); and (c) “I am frustrated that startingtalking moved FC’’: Rethinking our conceptualization of“independent’’ communication (our story).

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“Jamie’s talking!’’: Rethinking Our OwnPrivileging of Speech and Our LinearConceptualization of “Progress’’ (Our Story)

Approximately 2–3 weeks into the data collection pro-cess in the summer of 1999, I (Alicia Broderick) sent ane-mail to our faculty advisor and research sponsor. (Atthe time of this initial data collection, both of us weredoctoral students at a research university and were en-gaged in this inquiry as part of a summer research assis-tantship.) In that e-mail,2 my subject line read, “You’renot going to believe this. . . . ’’ My intent in sending themessage was to keep him apprised of the nature of thedata that we were collecting, and essentially to solicit ouradvisor’s approval as our faculty sponsor for this shiftin our focus from discussing physical independence intyping to discussing the emergence and integration of in-creasingly complex forms of spoken expression in Jamieand Lucy’s typed expression as well. As any qualitativeresearcher knows well, one often does not know exactlywhat one will end up studying until one has conductedan initial period of data collection in the field, and oftenwhat one ends up studying may bear little resemblanceto that which one originally set out to study. Although wethought that we were making a significant shift in whatwe were studying (from physical independence in typ-ing to developing independent communication throughspeech), we still conceptualized our work as being fun-damentally about studying and documenting indepen-dence in communication. (We even referred to our workas “the independence study.’’) Our excitement was re-lated to what we perceived to be a new (and more highlyculturally valued—therefore all the more exciting) formof demonstrating independence in communication—byspeaking.

We hesitated somewhat in sending off this initial e-mail to report upon our “progress’’ in the research pro-cess. We had a conversation in which we each made com-ments to the other, such as, “He’s never going to believethis,’’ “We have to tell him,’’ “I can’t believe he’s missingthis,’’and jokingly commenting, “I guess this is what youget for leaving the country and leaving your doc studentsto conduct what had seemed to be some fairly straight-forward data collection.’’ Deeply embedded in our orig-inal descriptions of and discussions about these eventswere several quite problematic unquestioned assump-tions: (a) that this development of speech was undoubt-edly a “good thing’’ for our participants, (b) that thisprogress was a very exciting and even somewhat incred-ible development for our participants, an interpretationthat we must humbly admit was at least partly informedby the absence of our own expectation of such a devel-opment, and (c) that this emergence of new forms anduses of speech constituted “progress’’ in a linear sensefor our participants’communication. Underlying each ofthese assumptions was a deep cultural valuing of speech

over augmentative or alternative forms of communica-tion, something that we initially failed to recognize inour own language and actions and that we eventuallycame to appreciate only by listening carefully to our par-ticipants’ collective stories.

The assumption that this was undoubtedly a pos-itive development was clearly embedded in our con-versations at the time. We made comments, such as,“Wow, Jamie, that’s fabulous—you’re using your speechso much more than you did even two weeks ago!’’ and“It’s so exciting to hear you talking like this, Lucy.’’ Ourassumption that developing more speech was unques-tionably a positive development is further embedded inthe excitement conveyed by the rather unwieldy (in ourrecollection) number of exclamation points that I insertedinto the e-mail when I wrote to apprise our advisor of re-cent events in our focus group. He wrote back a brief notesupporting our shift of attention in data collection punc-tuated by a reiterated charge of our mission: “Whateveryou do—make sure you get it all on videotape!’’

In addition to our unquestioned assumption that thiswas a positive development for Lucy and Jamie, alsoembedded in this early correspondence and in our earlydiscussions of these events was the assumption thatthese events were “incredible but true’’—a perspectivethat illustrates our embedded assumption that this sortof speech development had been an unexpected one—something that we had not anticipated and which there-fore was all the more exciting and incredible. Our ex-citement in response to this emergence of more complexand more useful speech illustrates that at some level wehad simply not expected Lucy to speak so much, norJamie to speak at all (beyond the repetitive phrases wewere accustomed to hearing from him), assumptions thatare problematic in either case. The charge to “get it allon videotape’’ further underscored our shared assump-tion that this development was incredible somehow—and that others might not believe this if we did not pro-duce visible, documented evidence of our participants’emergent speech. Adolescents with labels of autism sim-ply do not begin speaking at the age of 12. We felt that noone else would believe our story if we did not produceproper documentation of it.

We not only conceptualized the emergence of morereliable speech as an unquestionably positive develop-ment in Jamie’s and Lucy’s communication skills, but wealso initially conceptualized it as somehow represent-ing “progress’’ for them in a linear hierarchical sense. Aspeople who depend upon spoken language ourselves, inretrospect it seems quite clear that we were without ques-tion valuing spoken language more highly than typedlanguage in the early phases of data collection.

The crucial question that we were not asking our-selves at the time, but which our participants’ nar-ratives eventually posed quite deftly for us, was“progress toward what?’’Progress toward independence

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in communication? Progress toward some culturally de-fined standard of normalcy? Was independently pro-duced speech (though somewhat simplistic in form andtherefore somewhat limiting in communicative utilityfor our participants) inherently more valuable (and towhom?) than the more complex forms of language thatthey were able to produce with the support of a facilitatorthrough typing? In our initial, naıve, and necessarily po-sitioned excitement as speaking researchers, we had as-sumed that this “progress,’’as we conceptualized it at thetime, would unquestionably be a positive developmentfor our participants. We simply did not anticipate noradequately appreciate the complexities that this emer-gence of expanding forms of speech would pose for ourstudy participants in terms of managing their own iden-tities as students, as social teenagers/adolescents, and asintelligent and competent human beings. It took us sev-eral years of looking at this videotaped data, thinkingand reflecting about the meaning(s) of this inquiry, andhaving ongoing dialogues with Jamie and Lucy and ourother participants about their speech and their typingbefore we began to recognize the nature of the work wehad yet to do on ourselves. It is through listening deeplyto our participants’ own reflections on their emergentspeech that we have begun to appreciate the complexityand often problematic nature of this experience for them,as well as the complexity and problematic nature of ourown cultural and professional assumptions that we werebringing to bear on the interpretive process throughoutthis inquiry.

“I want to say I am treated better whenI type’’: Notes on Identity Management(Their Story)

Most of the young people who participated in ourstudy have had considerable experience with managingtheir own identities—particularly in response to others’shifts in perceptions of their competence in the wakeof their emergent access to expressive communication.That is, most of the young people who participated inthis study have personal histories that include havingbeen judged, labeled, and treated as “mentally retarded’’(by educators, family members, and members of societyat large) before they had reliable access to an expres-sive communication system. We have chosen to use theterm “mental retardation’’ in this piece, as it is one ofthe labels either currently or formerly imposed on all ofthe participants of this study. While other countries havediscontinued the use of this term, it continues to be usedregularly in the U.S. In using this term we wish to em-phasize that the ideas of “intellectual ability’’ or “mentalretardation,’’ and the meanings that are ascribed to themare socially, culturally, politically, and ideologically con-structed. Further, by arguing in this study that the con-struct of “mental retardation’’ is problematic, we do not

wish to imply that it is problematic primarily or only forthe participants in this study. Rather, our position is thatthis is not a useful or helpful construct to be applied toany person, as we argue that it is an “obstruction to un-derstanding’’ (see Bogdan & Taylor, 1982/1994) anotherperson as complexly human. It degrades, dehumanizes,and prevents people who hold this label from being inter-preted as complex and thoughtful equals (See Borthwick& Crossley, 1999).

When we did begin to pose questions to our partic-ipants about their emerging speech and the meaningsthey were constructing both through and in relation toit, most of them explicitly related their experiences withemergent forms of speech to their initial experiences withemergent forms of typed expression through FC. There-fore, there are two main parts to our participants’ storiesabout identity management as they have related them tous and as we have collectively reconstructed them here.In telling their collective story(ies), we briefly recount(a) examples of their accounts of the “revolutionary’’(Tyler Fihe) ways that their identities were reconstructedfollowing their initial access to typed language throughFC and (b) examples of their accounts of the complex,problematic, and often contradictory ways in which theiridentities are being similarly re-forged and reconstitutedas their expressive communication repertoire expands toinclude increasing amounts of spoken language in addi-tion to their typed language.

Shifts in Identity Post-FC: “I am so Much More Real ThanRetarded’’. Most of our participants credit gaining ac-cess to typing through FC as having been pivotal in con-testing their formerly ascribed identities as “retarded’’people and in forging new identities for themselves as“smart,’’ “competent,’’ and indeed “real’’ people. For ex-ample, Lucy Harrison described her shifting identity af-ter having access to FC in this way:

I am not ready to tell you that I am a whole person but Iam so much more real than retarded as I use the computerI am thinking that I am being a more believable commu-nicator. I used to be retarded but I am real normal nowand I am being treated as a believable talker. I want toexplain the retarded girl I was and I was not thinking Iwant to be real and I want to tell you that I am smart butI was thinking no one would ever know I was smart.

Lucy tells us that having access to a method of commu-nication (typed language through FC) gave her a way togain access to, in her words, “being seen as smart.’’ Thisaccess led her to be included in general education classesand curriculum in high school and now in college. Heraccess to this communication method also led her parentsto reframe how they saw and understood their daughter.Lucy’s mother reflects, “I feel so bad for how I used tothink of her. I bought into the idea that she was retarded.That must have been difficult for her.’’ As she becamebetter able to express herself in complex ways through

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typing with facilitation, Lucy’s parents, teachers, friends,and acquaintances reconstructed their understandingsof Lucy (formerly shaped by cultural notions of what itmeans to be a “mentally retarded’’ person) in recogni-tion of the complex person who had emerged for themas evidenced through her typed language.

Similarly, Jamie Burke describes the pivotal role thattyping has played in his life in coming to be perceivedand treated as “smart’’ and “competent, not silly’’:

Typing gives my life great joy as my nice and lovely lifecan be looked at as mostly foolish except when I type Iam now competent not silly. In school kids see me as asmart and funny guy typing.

Tyler Fihe also tells us that gaining access to typingthrough FC provided him access to “possibilities’’ and“opportunities.’’ He asserts that “This [typing] has beenrevolutionary in my life. I am now a real person. I amfull of possibilities and opportunities to be heard in theworld.’’ Sue Rubin echoed Tyler’s sentiment when shenoted that, prior to her use of FC, “actually I was a non-person . . . it wasn’t until I was able to communicate [viaFC] that I became a part of society. Now I could actu-ally participate. . . . I am now a person rather than a non-person’’ (Rubin et al., 2001, pp. 418–419). Thus, Lucy,Jamie, Tyler, and Sue all describe their post-FC identityas shifting from having been perceived as “silly,’’ “fool-ish,’’ “retarded,’’or a “non-person,’’ to being perceived as“competent,’’ “smart,’’ “normal,’’ and a “real person.’’

However, this shift in both ascribed and self-identityafter they gained access to typed expression through FCcannot be described as uniformly “good’’ or simple forour participants. This shift in others’ perceptions of theircompetence has often been a complex and difficult oneand one that is never complete—managing one’s per-ception as a competent human being is a process thatseemingly never ends for these and many other FC users.Franklin Wilson described his frustration and anger withthese shifts in his identity that followed his initial accessto typing through FC:

I was thought to be retarded and I was not and whenI was typing the people said I was smart and I am. Soeach time we do it and was smart it was good and bad. Itwas bad because I got angry how some assholes thoughtI was retarded.

While he welcomes others’ recognition of his“smart[ness]’’ through his typing, he is remindedeach time he “proves himself’’ in this way, he is re-minded that the person formerly thought he wasretarded. In many ways we have come to understandFranklin’s experience as a story of agency and resistanceto the powerful cultural and ideological discoursesand assumptions that contributed to constructing, andindeed constituting, him as “retarded’’for so many years.

Nathan Guzman described to us his perception of theways that his typing with FC has shaped his identity;

he reports that other kids think his typing is “fake’’ or“magic’’:

I think the kids think it is fake because someone’s handis on my shoulder and [the kids] think they are typingit. As for magic I think they mean I am some special kidwhat ever that means. . . . They think everything I type isfake. When I type I see that it disturbs people.

Similarly, Lucy Harrison told us that early on in her useof FC, “when I was in school I was speaking to peopleand typing to people and the people did not believe inthe typing.’’ The majority of our participants report simi-lar interpretations of others’ perceptions of their compe-tence shortly after gaining access to expressive languagethrough FC. Despite their perceptions that sometimespeople considered their typed language to be “fake,’’“magic,’’ or simply “did not believe in [it],’’ nevertheless,each of our participants has managed to a successfullyforge identities for himself or herself as a capable, com-petent, and “smart’’ person through their typing.

Many of our participants told us that they have con-centrated on excelling in their academic work as a cru-cial venue for constituting themselves as capable, compe-tent, and “smart’’ people through their typed language.The majority of our participants who are old enough tohave done so have either successfully graduated fromhigh school and are currently participating in collegecourses, or will graduate soon and have plans to attendcollege. However, these competent identities that theyhave forged are replete with compromises, as our par-ticipants are themselves acutely aware. Jamie Burke re-minds us that, “teachers think that I am smart, but nofun talks are made to me.’’ Referring to the ways thathis identity is shaped through his typed language, Jamiehas earlier noted that “typing is dearly difficult for oth-ers now feeling like I am better at placing answers butnot for funny talks in hallways. . . . They do not see meas a mostly enviable friend that boys want’’ (Broderick &Kasa-Hendrickson, 2001, p. 20).

Thus, it seemed clear to us that for Jamie and ourother participants, although their access to typed lan-guage through facilitation has enabled them to constructidentities as capable and competent individuals, theirstories are far from universally positive narratives of tri-umph or overcoming. Despite their ability to participateand even to excel in academic venues through typedlanguage, their stories tell of a never-ending and oftendisheartening process of continually negotiating and re-forging their identities as competent people in the faceof ongoing cultural resistance. A second antagonisticthread woven through their narratives is their acknowl-edgment that this mode of expression does not lend it-self easily to participating in informal social networkswith peers in ways that might support the constructionof social identities as a desirable friend. Jamie explained:“Friends are hard to keep interested as it takes very much

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desirous time to type. Kids are mostly good at talkingbut listening is not an asset they use. . . . [It] is not verygood as time is fleeting and so are they.’’ Whatever thelimitations of their typed expression, the story our par-ticipants tell of their newly emerging speech is one that isjust as fraught with limitations, complexities, and contra-dictions, in ways that we as speaking researchers had notanticipated nor even considered until we listened deeplyto the experiences and insights that they shared with us.

Shifts in Identity Incorporating Talking with Typing: “I amthinking that speech is asinine’’. Blair Brown tells us thatthe cultural assumptions about the relationship betweenspeech and competence are so powerful that when peo-ple see her move and hear her speak, “all they see is thatretarded girl [who] can’t talk.’’ When asked what peopleare likely to see when she types, she explains further:

All they see is a person who can perform a good trick andtype. They think it is a trick because they don’t think I amsmart really. Persons who only pay attention to my voicewill think I am retarded because they can’t imagine thatuseless body had a useful brain. When they look at mybody they see I can’t walk like other people and I needhelp getting my clothes on and off.

Similarly, Lucy Harrison told us that when she speaks,she feels she is often treated like “a baby or a stupidperson.’’ Lucy explains, “I am wanting to move awayfrom people who think I am a stupid person.’’ Lucy’sdislike of being infantilized by others when she speakshas led her to decide: “I type and I don’t speak [in mycollege courses].’’ She explained further:

I think I need to tell the professor not to call on me; I amscared I will be too loud and I can see the way peoplewill respond more to being quiet. . . . I am sure that manypeople will have no problem but I am scared that someof the students will think I am strange. . . . I want to say Iam treated better when I type [than when I speak].

Thus, although Lucy tells us that she is consciouslyworking on practicing her speech, particularly on read-ing her typed text aloud and on her ability to partici-pate verbally in brief social exchanges with family andfriends, she has made the strategic decision not to speakin the context of her college classrooms. Although sheis excited to be able to practice and use her emergingspeech in other, presumably safer venues, she is not will-ing at this point to risk potentially compromising heridentity as a competent student by potentially speakingtoo loudly in the classroom. In this context, Lucy’s emerg-ing speech can be understood to be a potential liability,rather than an asset.

Jamie Burke has had similar experiences and tells usthat even with a powerful method of communication, asupportive family, many friends, and the experience ofinclusion in his school, he is often deemed as an “invisibleperson’’ by many. Deciding when (or whether) to makethe concerted effort to communicate with others and via

which communication mode, are complex decisions thatour participants make on a daily (if not hourly or evenminute-to-minute) basis. On many occasions, Jamie tellsus that he elects to remain silent in public spaces, partic-ularly at stores, restaurants, and at social events. Jamieexplains to us the common impact of this decision:

Many times in stores people talk only to my parents. Ireally feel they believe I lack the mind to speak. Peoplestare at me, never speak to me as they do others. Theyreserve the baby voice for me. I am not a small child. AndI have thoughts to share. I am invisible to people whenI am in public, but without the way to really disappear Imust stay and feel as that. The experience of silence givesme a cloth of invisibility.

Thus, while Lucy’s decision to remain silent in hercollege classes may be interpreted as a strategic decisionto preserve a particular positive identity as a competentperson (via typing), Jamie’s silence in public spaces, ifhe does not communicate through typing, often resultsin people interpreting him as incompetent and simplyunable to join in the conversation. The dominant cul-tural assumptions about the relationship between one’sspeech and one’s competency (that is, the common equa-tion of non-speaking with non-thinking) serves to con-stitute Jamie as an “invisible’’ person in these situations.Further, if people do initiate a social interaction withJamie, his prior silence (and possibly other bodily mark-ers stereotypically associated with the idea of mentalretardation—i.e., hand flapping, unusual postures, etc.)often lead people to do so in “the baby voice,’’ treatinghim as, in Lucy’s words, “a baby or a stupid person.’’

In many ways, Jamie’s and Lucy’s experiences withusing speech versus staying silent were similar to thoseof the other participants in our study. The complexity ofthe decision-making process around when and whetherto speak, when and whether to type, or whether to re-main silent in any given circumstance is formidable, andtheir options seem to present as a double-edged sword:In many ways, our participants are damned if they dospeak, and they are also damned if they do not speak. Ei-ther decision could potentially contribute to others con-tinuing to ascribe to them an identity as a non-thinking,not “smart,’’ and even not a “real’’ individual—in effect,as virtual non-persons.

In a moment of early frustration with the ways thatothers were responding to his newly emerging voice,Jamie exclaimed that “I think speech is asinine. Peoplelaugh at my voice but typing makes me a smarter stu-dent.’’ Similarly, Nathan Guzman tells us about people’sinitial reactions to his speech in this way: “SometimesI say things that sound silly but it is not what I mean.They think I am strange. . . . People were just mean andthey usually thought I was out of my mind.’’ Jamie’s andNathan’s accounts resonate with Lucy’s observation thatshe is “treated better when [she] type[s].’’Franklin Wilson

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offered the explanation that “with my talking the percep-tion is that this is all there is—this is all I can do.’’ Hence,Jamie expressed his desire to eschew speaking altogetherand to embrace the identity that typing has enabled himto construct for himself.

While the participants in this study are struggling tofind their place among speaking others, this is an ongoingstruggle that seems never to be fully realized or resolved.Jamie explained, “So many times I want to say I am somuch as the other kids but I am different so it is assumedI am not listening. Like I am really dumb and mostlyretarded.’’ In a slightly less cynical moment, Jamie saysof his spoken language that “answers can be so goofy asmy voice needs to become as one with my brain beforeI can be like you.’’ Similarly, Sue Rubin reflects upon heremerging speech with some degree of cynicism herself:“[I] was thinking all I had to do was speak. Absolutelywrong. [I] am not speaking well enough to be considerednormal.’’Thus, the stories our participants tell about theirnewly emerging speech are far from the oversimplifiednarrative that we researchers initially spun about this de-velopment being an exciting, uniformly positively thingthat represented “progress’’ to them in a linear sense.Rather, they tell a story that is much more complex andnuanced, one that is more reminiscent of a narrative tra-jectory of “one step forward, two steps back’’ than one ofgrand linear progress and resolution.

“I am frustrated that starting talking moved FC[aside]’’: Rethinking Our Conceptualization of“Independent’’ Communication (Our Story)

In “nesting’’ our participants’ stories within ours, wehope that we may be yet able to construct a satisfying res-olution to this narrative—that is, to demonstrate that wedid indeed learn something through this inquiry processand that we hopefully will continue to do so by continu-ing to engage in this dialectic sort of inquiry between ourstory and theirs. Fairly early in the data collection pro-cess, Jamie shared with us that he was “frustrated thatstarting talking moved FC.’’ He went on to request:

Please place the pleasing FC in the middle of my com-munication. It will make a more smooth transition fromthe speaking. [Christi: “Jamie, does that mean that youwant us to always give you access to your typing whileyou are learning to speak?’’] Yes, I need the typing; it is aclear path to my thoughts. My speech is good, but dearlysilly at times.

Jamie was responding to his observation that, subse-quent to his development of some useful speech, a num-ber of people around him (we researchers, teachers, andothers) were so excited that he was speaking that wewere treating his speech as the preferred and most highlyvalued mode of communication—that is, he was increas-ingly being asked to attempt to interact verbally in com-municative exchanges, with language typed through FC

serving merely as a “backup’’when he was unable to suc-cessfully participate in an exchange using his spoken lan-guage. However, the determination as to whether Jamiewas “successfully’’using his speech was being largely de-fined by his communication partner, not by him. That is,if Jamie were asked a question and were able to verballyproduce an answer that satisfied the questioner, he wasincreasingly less likely to be offered or provided the op-portunity to type, regardless of whether Jamie felt thathe had been adequately able to express himself. Thus,Jamie’s role as primary decision maker in managing andintegrating his multi-modal communication system wasat risk of being set aside in favor of the “management’’of his communication by others, just as he felt that FCwas moved aside in the wake of the new “centering’’ ofspeech in his communication—both developments thatunderstandably must have been extremely frustratingfor Jamie.

In reflecting upon and considering our own partici-pation as well as observing and reflecting upon others’(teachers,’ peers,’ etc.) participation in creating this sit-uation that so frustrated Jamie, two observations standout as clear in retrospect. One is the cultural import weascribed to the notion of “independence’’ and the waysthat this particular cultural value may have been shap-ing our own and others’ responses to our participants’increasingly complex systems of expressive communica-tion. The second is the notion of “normalcy’’ and the dif-ferential cultural valuings that are so deeply embeddedin our perceptions of others as we construct what con-stitutes the norm and what subsequently is constructedas abnormal. The first of these we expand upon here; thelatter of these is explored at the conclusion of the article.

As indicated earlier, this inquiry was originally con-ceptualized as an exploration of ways that individualswho communicate via FC were developing increasingphysical independence in their typed communication.Part way into the data collection process, we expandedour conceptualization of “independence in communica-tion’’ to encompass not only independence from physicaltouch of a facilitator in typing but also the increasingly in-dependent use of spoken language. Yet we maintainedour focus on exploring and documenting the develop-ment of “independence in communication.’’ The placethat our participants’ stories led us to in our own jour-ney is the point at which we had to ask ourselves diffi-cult questions about the meaning and significance of ourcontinued focus on “independence’’ in communicationin our inquiry process. At this point, our story becomesnecessarily nested within the broader cultural narrativesthat surround the notion of independence in Americanculture and schooling, in special education, and in thediscourse surrounding FC in particular. We were, after all(and continue to be), navigating our way through a par-ticular discursive and cultural landscape, the contours ofwhich we briefly describe here.

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In many ways, our agenda of attempting to exploreand understand the ways that people achieve “indepen-dence’’ in their typing (and we did conceptualize it asan end product or goal that one “achieved,’’ or at leastmade successive approximations toward) emerged mostparticularly upon the landscape forged in the wake ofthe authorship controversies surrounding FC in the early1990s. As we have noted in another manuscript (Kasa-Hendrickson, Broderick, & Biklen, 2006 draft), much ofthe resistance to acknowledging the validity of the au-thorship of language typed via facilitation undoubtedlyis related to “a dominant belief in the often-presumedlack of competence of the individuals communicatingvia the method (i.e., individuals with labels of autism,mental retardation, Down syndrome, and other develop-mental disabilities)’’ (p. 4). However, much of the publicdebate over authorship in the early 1990s centered (andto some degree continues to center) not explicitly on thispresumed lack of competence of individuals communi-cating via FC but rather on the notion of “facilitator influ-ence,’’ a reasonable concern that understandably stemsin part from the supported, interactive, interdependentnature of the method itself (i.e., the provision by a facili-tator of physical, emotional, and other supports in orderto type).

Thus, within the specific context of the FC discoursecommunity, the notion of “independence’’ has beenforced to the center of our consciousness from the verybeginning as the perceived lack of “independence’’ in fa-cilitated typing has so often been (and so often continuesto be) offered as the primary grounds for invalidating anindividual’s expressed thoughts, opinions, and desires.We do not mean to imply that advocates of FC have notlong valued and advocated for the greater cultural valu-ing of reciprocity and interdependence. However, we dosuggest that for some time, the parameters of the dis-course (e.g., what counts as “doable’’and “sayable’’ [Fou-cault, 1972]) surrounding FC were usually set by criticsof FC rather than by its advocates. Advocates, therefore,were placed in a position of reacting and responding tothe terms of the discourse as set by the critics, includingan acceptance of the largely unquestioned assumptionthat achievement of independence would be a necessarycondition to silence the controversy over the validity ofFC users’communication. Indeed, Sue Rubin noted fairlyearly in her process of learning to communicate via FC:“The first thing I have to do is convince people I amtyping my own thoughts when I use Facilitated Com-munication’’ (Burns, 1997). Sue would later reiterate thisconviction: “I wanted to go to college and I knew therewould always be a question about my intelligence aslong as I needed physical support. . . . I decided to do it[type independently of physical support]. I did it’’(Rubinet al., 2001, p. 420). Indeed, as noted by Beukelman andMirenda (1998), there is “a small group of people aroundthe world who began communicating through FC and

are now able to type either independently or with mini-mal, hand-on-shoulder support. . . . For them, the contro-versy [of authorship] has ended’’(p. 327). That is, Beukel-man and Mirenda argue that the controversy of author-ship has ended for some FC users, but not for all—only forthose individuals who have demonstrated their ability totype independently.

It also seems reasonable to us that Jamie’s teachersand others who may not have been as deeply embeddedin the FC discourse community as we were, and whotherefore may potentially have been less aware of theprimacy of the high value placed upon “independence’’in much of that discourse community, still appeared to bedrawing heavily upon the high cultural values ascribedto the notion of independence. Indeed, the notion of in-dependence is particularly valorized within the profes-sion of special education, and it seems likely that Jamie’steachers and others (including ourselves) may have beenplacing a higher value upon his spoken communicationwhen it emerged than upon his typed communication,because the perception was that he could produce theformer “independently,’’ while he was dependent uponthe presence and support of a facilitator in order to pro-duce his typed communication (even after he no longerrequired physical support).

The reflective journey that we have narrated here hasprompted a significant rethinking on our part of theimport and the nature of “independence in communi-cation’’ as we originally conceptualized it. Key to this re-thinking has been the insightful and much-needed con-ceptual work of the staff and affiliates of the FacilitatedCommunication Institute at Syracuse University (Arndt,Rossetti, Ashby, & Kim, 2004; Rosetti, Ashby, Arndt, Kim,& Chadwick, 2003). I (Alicia) recall sitting in the back ofthe room at the first cited conference presentation, unableto speak up and participate in the rich discussion due tomy own reluctance to risk waking my small son who wassleeping in my arms, yet absolutely riveted by the ideasbeing discussed. It was one of those rare and delightfuloccasions in which one encounters an idea that so per-fectly challenges and stimulates and offers an obviously(in hindsight) “missing piece’’ to one’s own thinking thatyou cannot imagine why you had not already thoughtof it yourself, except that you realize that you were noteven aware that you were missing this crucial piece untilyou fortuitously happened upon it.

I listened as the presenters outlined their revised con-ceptualization of what we have been referring to hereto-fore as “independence’’ in communication. They arguedthat the notion of “independence’’ in communication iseffectively a misnomer, as no one is truly independent inmost ventures, particularly not in the act of engaging incommunication, which is by its very nature a dialogic,reciprocal, and interdependent process by which com-munication partners co-construct understandings in con-cert with one another. Rather than talking about working

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toward “independence’’ in communication, the presen-ters posited that we work toward supporting individ-uals’ exercising agency in the communication process—that is, exercising control over one’s own communica-tion decision-making and consistently having the abilityto access whatever mode(s) of communication one mayrequire in order to say what one wants to say.

I left the presentation and immediately sought outChristi, and we discussed the ways in which this recon-ceptualization could impact our analysis of our partic-ipants’ experiences with integrating their spoken andtyped forms of expression. In revisiting our data yetagain, we began to recognize the ways in which we hadbeen differentially valuing independence in form of ex-pression, rather than focusing on and adequately valuingthe many ways in which the FC users were actively exer-cising agency and control over their own communicativeprocess (i.e., in deciding when and whether to speak, andwhen and whether to type) in order to actively managetheir own identities as competent individuals.

Thus, our story brings us full circle back to a funda-mental questioning of the primary organizing constructof the entire inquiry as it was originally undertaken—that of “independence in communication.’’ It seems anironic (yet entirely fitting) narrative twist that one of themost significant findings of the inquiry should be theloss of relevance of meaning of the initial organizing con-struct. Yet this process has been an incredibly instructiveand valuable one for us, and it has left us, in its wake,with a much more complex and nuanced understandingof the ways in which individuals who experience signif-icant difficulty with expressive communication can anddo exercise both resistance and agency by actively par-ticipating in the dialectic cultural processes of forgingone’s own identity and of making meaning of it in theworld.

CONCLUSION

By listening to our participants, we have been ableto begin to appreciate the complexity of the many chal-lenges of creating integrated systems of expressive com-munication in which one draws upon multiple modes ofcommunication. It has become clear to us that whateverthe dominant cultural values accorded spoken language,whether because it is perceived to be more indepen-dently produced or because it more closely approxi-mates the dominant mode of expression of speaking,nondisabled, “normates’’ (Thomson, 1997), our partici-pants have managed to successfully engage in resistingthe unquestioned reproduction of these dominant valuesthrough their thoughtful, incisive, and ongoing dialoguewith us throughout the research process. We are deeplyindebted to them for continuing to challenge and fur-ther our thinking around these issues in profound ways.These individuals have continually demonstrated their

own agency in the complex, fluid, and constant process ofmanaging and constructing, in concert with those aroundthem and often in the face of significant resistance tothe process, their own positive and valued identities ascompetent communicators. Our participants have beeninvolved in this complex process of simultaneously bal-ancing their own pragmatic communication needs re-garding fluidity, speed, ease of access, and convenienceof self-expression with their needs to adequately conveythe complexity of their own thoughts under any givencircumstance. Additionally, they are actively engaged inthe complex process of balancing their own needs forexpression with their need to “manage’’ the ways thattheir decisions about expressive communication may af-fect others’ perceptions of them.

We conclude with our reflections on the thoughts ofSue Rubin when she stated that she was “thinking allI had to do was speak. Absolutely wrong. [I] am notspeaking well enough to be considered normal.’’ Simi-larly, Jamie Burke states that “[m]y voice needs to be-come one with my brain before I can be like you.’’ Inreflecting upon these two pieces of data, we cannot helpbut question ourselves—what is the goal here? Is it tobe “considered normal’’? Is it to “be like you [us]’’? Theimplications of Sue’s and Jamie’s thoughts on this sub-ject are profound. We wish to challenge the implicit (andexplicit) valuings given to the construct of “normalcy,’’and the ways in which the valuing of the cultural con-struct of normalcy serves to continue to construct and toconstitute its exclusionary binary partner—abnormalcy.We argue that the experiences of our participants nar-rated herein can and do effectively challenge the natureof the binary categories of ability and disability, normalcyand abnormalcy, independence and dependence. We of-fer their experiences as examples of some of the waysthat individuals can and do actively exercise agency inresisting oppressive and exclusionary understandings ofdisability, not only in their own lives but in ways that im-pact the lives of others whose communication systemsare similar in complexity to their own. And we offer ourown experience as researchers as examples of some ofthe ways that we can hope to learn from our participantshow best to act as supportive allies in these individuals’daily acts of resistance and of agency.

NOTES

We are greatly indebted to Zach Rosetti, Christy Ashby,and other staff and affiliates of the Facilitated Communica-tion Institute at Syracuse University for their creative, insight-ful, and much-needed reconceptualization of the construct of“independence’’ in communication as it relates to facilitatedcommunication.

1. Pseudonyms are used for our participants unless theyrequested that their real name be used. It should be noted thatthe majority of our participants elected to use their real names.

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2. All quotations from e-mail correspondence are para-phrased based upon the collective memories of the correspon-dents involved, as we were unable to retrieve the originalelectronic documents. While access to the original documentswould have been preferable and would have offered the op-portunity for a more precise discourse analysis, the generaldescriptions here should be sufficient to illustrate the pointsof analysis made. All descriptions presented are agreed uponby both sender and receiver of correspondence as being fairrepresentations of the general content and tone of the originalmessages.

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Alicia A. Broderick is an assistant professor of Education atTeachers College, Columbia University. Alicia’s research takesa Disability Studies perspective and focuses on issues relatedto inclusive education, autism, and facilitated communication.

Christi Kasa-Hendrickson is an assistant professor at Chap-man University in Orange, California. Christi’s research focuseson inclusive education and facilitated communication.

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