Abstract

Feminist social research and disability studies converge in arguing for a research methodology undertaken on behalf of and to empower research participants. Our research, an ongoing life history project with Jon Feucht, has been undertaken in this tradition. Throughout much of his life, Jon struggled with a severe speech disability due to cerebral palsy that significantly impaired his ability to communicate verbally with others. After acquiring a sophisticated augmentative communication device, Jon's life changed for the better. In this paper we describe the nature of augmentative communication, share some of Jon's thoughts about augmentative communication and people with disabilities, and explore some of the challenges and opportunities facing researchers collaborating on research projects with individuals who use augmentative communication to speak.

As this boy sits weeks away from his piece of history …
Thinking about everything he has been through
But still knowing he's still in the prologue
Of his amazing story
His heart hungers to meet the person he is
Why do so many people love him?
What makes people to live and breathe
On every word that he says

-Jon Feucht, "The Late of the Early"

The communication device under his fingers
Is my piano …
Making beautiful sounds like they do
Even though I can't sing like Joel, John and others,
My words are my art.
I can romance women; I can make people laugh,
And move young people like Lennon did.
I have a slow hand that always allows
Me to carefully choose the perfect words
I am as flamboyant as the rocketman …
Will I become a legend of my field?
Will I leave a legacy?

-Jon Feucht, "Keyboard Man"

Feminist social research and disability studies converge in arguing for a research methodology undertaken on behalf of and to empower research participants. It aims to give voice to those who have been marginalized by society, making their experiences more visible and accessible to mainstream core groups and helping to facilitate the incorporation of social differences as valued elements of a civil moral community. As a research methodology, it also strives for emphatic and intersubjective understanding between scholarly researchers and individuals with whom they collaborate to produce empirical knowledge, embracing rather than eschewing researchers' subjectivity in the research process (Frank, 2000; Kitchin, 2000; Papadimitriou, 2001; Reinherz, 1992; Ramazanoglu and Holland, 2002; Smith, 2005).

In disability studies, primarily in Great Britain, this approach has been framed as the practice of "emancipatory research" (Barton, 2005; Oliver, 1997). While some have defined this approach somewhat narrowly, essentially equating it with participatory research in the context of progressive social action for people with disabilities (Zarb, 1992), others suggest that the very act of telling one's story may be empowering in and of itself (Petersen, 2011). More generally, this perspective is consistent with the broader postmodern turn in ethnographic inquiry, which abandons the modernist ideal of the trained "social science voyeur" who stands apart from the experience being observed, remembered, or recorded (Denzin, 1998, 411; see also Berger and Quinney, 2005).

Our research, an ongoing life history project with Jon Feucht, has been undertaken in this tradition, which we prefer to characterize as the project of "methodological empowerment." Throughout much of his life, Jon struggled with a severe speech disability due to cerebral palsy that significantly impaired his ability to communicate verbally with others. But after acquiring and becoming proficient in the use of a computerized augmentative communication device, Jon's life changed for the better. He earned a Bachelor's Degree in Psychology and a Masters Degree in Special Education from the University of Wisconsin-Whitewater (UWW), a campus that is known for the accessibility and services it offers to students with disabilities (National Association of Student Personnel Administrators, 1999). He is also the founding director of Authentic Voices of America, an annual summer camp held on the UWW campus for disabled youths who use augmentative communication devices; and he has self-published two books: Straight Talks from My Desk (2005b), a book of his speeches, and The Tan Car, (2003b), a book of his poems. In this paper we describe the nature of augmentative communication devices, share some of Jon's thoughts about augmentative communication and people with disabilities, and explore some of the challenges and opportunities facing researchers collaborating on research projects with individuals who use augmentative communication to speak.

What is Augmentative Communication?

Augmentative communication, or alternative communication (AAC), refers to a method of communication that relies on assistive devices to translate thought into communication. It is used by individuals with severe speech or language disabilities—an estimated 10 to 20 million people worldwide—stemming from physiological conditions such as cerebral palsy, amyotropic lateral sclerosis, autism, multiple sclerosis, muscular dystrophy, and brain injury due to stroke or other trauma (AAC Mentor Project, 2010; Hill and Romich, 2002).

Whereas unaided AAC includes "natural" communication such as gestures and sign language, aided AAC includes use of external objects such as drawings, photographs, and orthography (hand- or type-written letters or other symbols), as well as synthesized speech, or speech-generating devices (SGD), also called Voice Output Communication Aids, which use a computer algorithm that translates alphanumeric or other symbols into spoken speech. 1 Light tech AAC systems include non-computer devices such as a binder or album that contains photos of common objects and familiar places and people, an alphabet display on a lap tray that can be used to point to letters to spell words, or a vest worn by a child's parents that allows the child to point to objects to communicate his or her wishes. High tech AAC systems, on the other hand, use a computerized SGD to input messages that can be translated into audio communication (AAC Mentor Project, 2010; Baker, 2005; Texas State Leadership for Autism, 2009).

Hill and Romich (2002) note that computerized AAC technology is comprised of three general elements: selection, language representation, and outputs. Selection entails the individuals input into the process, such as use of a keyboard, mouse, or joy stick. 2 Language representation refers to "the interface between the means of selection and the generated communication" (p. 58). 3 Alphabet-based representational methods include simple spelling, word prediction (which reduces keystrokes by anticipating the selection), and letter coding (or abbreviations); while semantic compaction, which requires more training to use proficiently, refers to the use of "short sequences of symbols from a small symbol set to define words and commonly used phrases" (p. 59). Lastly, output simply refers to the method of speech, which can be visual or audio.

AAC in the Life of Jon Feucht

As noted earlier, Jon Feucht, born in 1977, has cerebral palsy. Cerebral palsy is a condition caused by damage to the brain before, during, or soon after birth (Miller and Bachrach, 1995). It is neither a hereditary or degenerative condition, and people with cerebral palsy vary considerably in the nature of their impairments. Jon's case is fairly severe; both his lower body and upper body are affected, and his speech is impaired.

Jon obtained his first AAC device when he became eligible for special education services when he was three years old, a consequence of federal educational reforms that were passed in the 1970s (see Fleischer and Zames, 2001; Scotch, 2001; Shapiro, 1993). This was a tri-fold chart with about 200 words, which used a system called "bliss symbols" to which Jon pointed to communicate his thoughts. 4 When he was in the second grade, his parents bought him a rudimentary SGD, which produced a robot-like sound that was difficult for people to understand. Jon recalls spending "a very long time" at an assistive technology center trying out different devices before selecting this one, which the salesperson said "would be obsolete even before" he got home. Jon says that he does not actually consider it to be his first SGD because he "never felt comfortable using it" and because he had to "type everything out letter by letter" and "people rarely understood what [he] said." It did, on the other hand, "come in handy for spelling tests," because it had a feature that enabled him to print out words. For the most part, however, Jon continued to use his word board. Research on the use of advanced technology by people with disabilities finds that it is common for such devices to be abandoned early—because they may be difficult to use or fail to deliver the hoped for results (Clarke et al., 2001; Harris, 2010; Jacobs et al., 2004; Lasker and Bedrosian, 2001). They are also rather expensive, and there is little institutional support for the technical assistance that is needed to set up and maintain the equipment (Hodge, 2007).

It was not until many years later, when he was 20 years old, that Jon truly found his voice. He was attending college at UWW, a school that has as one of its select missions in the University of Wisconsin System the provision of services for students with disabilities. During his first year of college, he "pulled up to a service desk" (Jon uses a power chair) and pointed to the words on his board. The person staffing the desk was confused about what he was doing and even called the police. Jon quickly departed, realizing that he "needed something more" than his board.

Shortly thereafter, a staff member of the university's Disabled Student Services (now called the Center for Students with Disabilities) stopped Jon in the hallway and said, "Perfect, you're here, follow me." They went into a conference room and met with three other students and a representative of the Prentke Romich Company to try out what was at that time a state-of-the art Liberator SGD. Jon was the only one of the students who liked using the device, and he worked hard over the next year to become proficient at it. This dramatically changed his life, but Jon's ability to communicate with AAC was only the beginning, not the end, of his story (more on this later).

Initiating the Process of Collaboration

It was the spring of 2008, and Ron Berger had just published a collaborative book with Melvin Juette: Wheelchair Warrior Gangs, Disability and Basketball. Melvin had grown up in Chicago where he had become involved in the city's notorious street gang scene. In 1986, at the age of 16, he was shot and paralyzed, a dramatic event that caused him to change his life. He became involved in wheelchair basketball and later enrolled at UWW to play on the university's wheelchair basketball team. Melvin eventually went on to become the first UWW student to play on the U.S. national team in the international Paralympics and Gold Cup, and he became a role model to other students with disabilities.

"The text of a written biography," as Oakley (2010, p. 431) observes, "is the product of two biographies—the writer and the person written about," and all biographical writers must ask themselves the question, "am I the right person to do this biography?" (see also Backscheider, 1999). In our case, however, it was Jon who asked the question, of Ron and Jennifer, "are they the right persons to help me write my story?" Thus, after learning about the publication of Wheelchair Warrior, Jon sent Ron an e-mail expressing interest in setting up a meeting to discuss the possibility of collaborating on a book about his own life.

During the summer of 2003, after obtaining his Bachelor's degree and starting his Master's degree, Jon had read two autobiographies of successful people with cerebral palsy, Bill Rush's Journey Out of Silence and Rick Creech's Reflections from a Unicorn. Both of them had gone onto college and, as Jon's father would say, "made a life for themselves." Now Jon, who was also making a life for himself, wanted to tell his story too. As he said, "I have always known that under the right circumstances I was going to pen my own autobiography. Being the flamboyant, colorful and sometimes narcissistic person I am, I thought I had this excellent and powerful story that needed to be told." But Jon also realized that he needed a co-author to help him with the book, "because I do better when people keep me on task given all the other activities that I am responsible for." Of Ron, Jon said, "I really wanted to meet this guy and see if he would be interested in helping me. I was very intrigued because over the last few years he was emerging on campus as a person getting into disability studies."

The meeting between Jon and Ron was arranged, and when Jon arrived in Ron's campus office, Ron felt as if Jon was interviewing him for a job. Jon wanted to make sure he was comfortable with Ron; and if they both agreed to the project, that Ron would be committed to following through.

People with disabilities are sometimes skeptical of able-bodied researchers, feeling that they might lack empathy and be unduly influenced by able-bodied assumptions (Akamanti, 2004; Branfield, 1998 Charlton, 1998). 5 Ron is an able-bodied man, but he has familial experience with disability (his daughter has cerebral palsy), and his previous collaborative research with Melvin6 and his involvement in teaching a course on disability—to say nothing of his experience publishing books and his editorship of a "Disability in Society" book series with an academic publisher—gave him some credibility in Jon's eyes.

Jon explained to Ron that he was a little disgruntled that wheelchair athletes like Melvin seemed to get all of the attention and notoriety. He didn't even think that Melvin, who uses a manual wheelchair for mobility and who has no physical impairment above his hips, was even disabled. Jon said he thought it was important to tell a story about someone, like himself, who is really disabled.

Ron told Jon that he would be interested in collaborating on a book, if Jon could first provide him with about 80 double-spaced pages of autobiographical narrative chronicling his life. Upon completion of that narrative, Ron would interview Jon to fill in gaps in the story and explore some of the personal and sociological issues that would be of interest to readers of a book on disability, both scholars and lay readers alike. Ron and Jon also agreed that Ron would interview Jon's parents and uncle, the three family members who knew him best, to get their perspective on Jon's life.

The meeting seemed to go well, and Jon left Ron's office indicating he would think it over. He soon wrote Ron back expressing enthusiasm for the project. As the months went buy, Jon wrote about 17 pages of life narrative. But then he had writer's block. He told Ron that he had been suffering from depression (see Feucht, 2005a) and no longer felt he could write on his own. He asked Ron if he would be willing to meet regularly with him to record his story.

This request was not a time commitment Ron was able to make. But he told Jon he would explore the possibility of getting someone else involved in the project, either a student or another faculty member. It was at this point that Ron contacted Jennifer Flad, who expressed an interest in becoming involved in the project. Ron told Jon about Jennifer's background as an experienced and emphatic ethnographer and interviewer, with a specialization in medical sociology. He also assured Jon that he would like her very much as a person. Jon was enthusiastic about meeting her, and we set up a meeting with the three of us. This would be the first time Jennifer had ever met a person who used an AAC device.

Reflections on Methodological Empowerment

When Jennifer was first contemplating the idea of a life story project of this nature she had serious reservations. When she had taken a methodology course in graduate school on life history and narratives, she had been intrigued by the detail and knowledge that could be produced by a researcher working with a key informant. At the same time, she was struck by the unequal power dynamics that she consistently witnessed as she read the words of the informants but saw the researchers' names on the articles or books that were published. This struck her as rather exploitative, and she voiced her concern to her professor, who himself was engaged in this type of work. His response was to challenge her to think through her methodological choices: whether she really wanted to conduct qualitative interviews and advance her own professional career by doing such work.

Jennifer's struggles with how to produce knowledge with informants led her to investigate other methods of inquiry. She found feminist work that addressed these concerns, and the perspective she gained solidified her stance on research committed to evaluating epistemology and the need for self-reflexive inquiry; and she became increasingly comfortable with research that treated informants as true experts of their own experience (Smith, 2005). If power was inherent in all forms of research with human subjects, then such reflexivity becomes necessary to unpack what knowledge is contingent upon, how the researcher is social situated, and how the research agenda or process is organized (Ramazanoglu and Holland, 2002).

In his own work, too, Ron had grappled with this dilemma and felt he had resolved it to his satisfaction. In undertaking his work with Melvin Juette, and in another study of other wheelchair athletes (Berger, 2009), he had viewed the project as a "joint production" between himself and the research participants (Neuman, 2011, p. 449), only interviewing people who wanted their stories to be told. His goal had been to tap into the tacit knowledge available to insiders of a social milieu, to learn from them rather than to study them. In doing so, he had also hoped to gain insight into his daughter's experience of disability.

When Jennifer met Jon for the first time, she too felt like she was being interviewed for a job. As she sat in Ron's office waiting to meet Jon, she was nervous and hoped she would appear to him as someone who could be trusted. When Jon arrived, Ron introduced him to Jennifer, and after a little small talk, Jon discussed his hopes for this project. He was disappointed and frustrated with himself that he had been unable to make more progress writing his story on his own. Jennifer's role would be to work with him on a regular basis to help him tell it.

Jennifer was immediately put at ease by the meeting. Foremost in her mind was that it was Jon who wanted to tell his story, and he seemed to know what he wanted to say and would be calling the shots. 7 She felt that any exploitation she had anticipated was at least minimized by the structure of this encounter and the premise of the project. Jon was and would remain an active participant and co-producer of the knowledge they would create together.

The first "interview" between Jennifer and Jon took place in Jennifer's campus office. He arrived, and before they knew it an hour and a half went by. Utilizing the SGD for an interview was great in some ways. Jon could plug his keyboard/device into Jennifer's computer and whatever he said would open into a Word document. They learned how to negotiate this protocol as they went along. Jon, for instance, wanted to be able to make sure that his words were coming up right on the screen, and that when he deleted or changed a word, it was changing correctly. He also wanted Jennifer to write down any questions and follow up questions that she asked of him, so he could view them on the screen—both so that he could carefully chose his words for his response and also simply "for the record."

Jon felt that he and Jennifer "clicked right away, getting things written and showing everybody involved that we're on our way to producing something special." He said that the "addition of Jennifer was the missing piece in the puzzle" in getting the project going.

As noted earlier, prior to Jennifer's involvement Jon had been frustrated with his own contribution, and he was highly motivated to get his story "out there." During the first couple of sessions and in e-mail correspondences, Jon repeatedly asked Jennifer if she was in it for the "long haul" because the amount of data that would be needed to generate a book would take a considerable period of time. So the two of them began structuring their time together in ways that enabled them to complete as much interview work in each session as possible.

In an average 90 minute session, Jon and Jennifer were able to produce anywhere from one paragraph to about half a page in dialogue. The time that this took, even with the automatic transcription, was for Jennifer a new dimension of the interview process. They quickly learned to "get right into it" when Jon arrived in order to preserve their time together, and in doing so found themselves cutting out the "small talk"—the niceties that come with a growing relationship. But this was problematic for Jennifer, a disjuncture from her previous interview experience, especially interviews around the sort of intimate and personal aspects of one's life that she had explored with others and was now doing with Jon. When Jon came in sniffling one day, Jennifer's response was to ask him about his health. This took up about 10 minutes of their time. Thus Jennifer learned to choose her words carefully about "non-work" matters so that Jon wouldn't feel the need to respond. They would devote as much time as they could for the work, and when their 90 minutes were up, Jon would abruptly leave the room. Jennifer was disappointed they she didn't get to ask Jon how his wife was or whether he was doing anything special over the weekend. For her, this was not simply "small talk," but a way for her to show Jon that she liked him, that she cared about him and was interested in him as a person, not simply as someone she was interviewing.

At first, Jennifer thought that Jon was a little skeptical of her intentions or of their ability to work well together, and they had to work through a process of establishing trust and intersubjective understanding, which is arguably one of the most challenging aspects of research between non-disabled researchers and disabled informants (Papadimitriou, 2001). With the limited time available for each session, Jennifer had to compose the questions she wanted to ask carefully, limiting herself to one or two each time, and it became frustrating to both of them when she would ask something that was unclear or when one or both of them couldn't figure out what the other was trying to say. Of course, language barriers exist with everyone who tries to express themselves to others, and we are often misunderstood. But to Jennifer the potential for misunderstanding with Jon seemed more complex and challenging. Sometimes Jon didn't feel that she was understanding his meaning, and they spent the majority of their time straightening out this issue. At the same time, these encounters were "teachable moments," as Jennifer began to reflect upon her own tendency to speak quickly without thinking through the clarity of what she was saying, and also about some of her own biases or preconceived notions about people with disabilities. Papadimitriou (2001, p. 48) describes this element of the disability research process in phenomenological terms as entailing "two movements: one reflexive the other emphatic." In the reflexive mode the researcher looks within in order to bracket or "clear oneself out of the way," and in the emphatic mode the researcher looks "outward to the world of disability in order to listen to the Other's experience."

One of the problematic encounters between Jennifer and Jon involved a discussion about what Jon described as two kinds of students at UWW: those who tend to stay at home and don't "get off their behinds," and those like Jon who are advocates for themselves and actively engage their community in an effort "to make their mark on the world" (Feucht, 2003a, p. 2). Jennifer was taken aback by Jon's critical view of the former group of students, especially in light of Jon's previous accounts of the discriminatory barriers he has faced in his life. She asked him why he thought that the first group of students behaved in the way that they did. Perhaps this was their mode of adaptation to the very same structural barriers that Jon himself had encountered.

Jon seemed to take some offense at this and wanted to set Jennifer straight. He insisted that we shouldn't blame anything on outside forces—that the struggles he has endured would be like a catcher saying he couldn't deal with the fastballs coming at him or like a smoker who blames getting cancer on the tobacco company. In sociological terms, it became apparent that Jon was privileging personal agency over social structure in his view of the world, whereas Jennifer was privileging structure over agency. Ron, too, had encountered this view among some of the disabled wheelchair athletes he had interviewed, with some who told him that "there are some people who try to use their disability to their advantage" by asking for accommodations they don't need or "who have the ability … [but] they just let other people help them all the time" (quoted in Berger, 2009, pp. 76, 88). As Matt Glowacki, who was born without legs, explained: "Whitewater has created a wonderful little Disney World for people with disabilities. They do everything for them… . [Today, people with disabilities have rights, but] the biggest problem with that fact is that once you get the rights, the hardest thing to do is to encourage people to use those rights" (quoted in Berger, 2009, pp. 66, 68).

Jennifer began to wonder whether her emphasis on structure, so common among sociologists, reflected an ableist bias that lowered expectations for people with disabilities. She realized that the story Jon wanted to tell was not a story about barriers, but about refusing to give into lowered expectations and about working hard to overcome adversity to improve oneself and be a role model for others: to be the best you can be, and to get the tools you need in order to do that. As Jon said, in a speech he gave upon the receiving the 2003 Edwin and Esther Prentke AAC Distinguished Lecturer award:

Why do we act like our work is done when get somebody communicating effectively? Our work is not done at that point; it's just beginning. It's like finding a penny on the ground and thinking that you are set for life? Do we celebrate every time able-bodied people talk? Of course not, it's part of everyday life.
I know many parents and educators who are so happy to have their child be able to just express their needs. I think people who do this are doing a great disservice to their child; because there is so much more to life and communication than just expressing needs. We need to teach children and adults how to communicate their feelings and ideas; by doing this, we get to see their personality and start to understand who they are. I believe that besides teaching our children how to communicate, we need to teach them three fundamental values of communication… . First, they need to know how to use communication to function in mainstream America… . Secondly, we need to teach them how to use communication to get ahead in life… . Third, we need to teach them how to use communication to make their mark on the world (Feucht, 2003a, p. 2).

At the same time, Jennifer was fearful of thinking about Jon or writing Jon's story as a "supercrip" narrative of sorts—a story about overcoming adversity. The notion of the supercrip is one that Ron, too, had encountered in his study of wheelchair athletes. The supercrip is a designation applied to those individuals whose "inspirational" stories of courage, dedication, and hard work prove that it can be done, that one can defy the odds and accomplish the impossible. The concern, which is prominent among disability scholars and activists, is that such stories of success foster unrealistic expectations about what people with disabilities can achieve, if only they tried hard enough. According to critics, the supercrip mystique encourages the general public to adopt "self-made man" and "blaming-the-victim" ideologies (see Ryan, 1971) that downplay the importance of social reforms aimed at reducing ableist stereotypes and discriminatory barriers and at increasing accommodations and accessibility to mainstream society, which are the essence of the "social model" of disability (Berger, 2009; Shakespeare, 2010). But it is not only the highlighting of exceptional feats that critics of the supercrip narrative question, but also the stories of people with disabilities accomplishing more mundane everyday tasks, such as driving a car, getting a college degree, having a job, or even having sex. 8 These stories, too, may function to reinforce stereotypes and mitigate social model reforms (Clare, 1999).

Be that as it may, any adequate sociological interpretation of any social phenomenon, disability or otherwise, needs to take into account both personal agency and social structure—and the dynamic interplay between the two—for these are the two fundamental presuppositional categories of all sociological discourse (Alexander, 1982; Giddens, 1984). The problem with much life history research, as Berger (2008) points out, is that researchers have under-theorized the link, failing to note that both agency and structure each presuppose the other and are simultaneously enacted in specific situational contexts. In doing so, they also fail to illuminate the ways in which agentive action is not simply constrained by social structure but also enabled by it, facilitating the ongoing transformation of social structures and hence social change (Giddens, 1984; Sewell, 1992). In the case of disability, for example, the ability of agentive actors to transform social structures that constrain the lives of people with disabilities has been enabled by the contemporary disability rights movement, of which Jon is apart, and advances in assistive technology. At the same time, people like Jon inarguably possess the quality of what social psychologists describe as a self-efficacy, the ability to experience themselves as causal agents capable of acting upon rather than merely reacting to their external environment (Bandura, 1997; Gecas, 1989).

Committing to an epistemological stance of co-producing knowledge with both researchers and informants, while also maintaining the self-reflexivity of all the participants involved, requires ongoing assessment of the process of research production. Focusing on Jon's expert knowledge of his experience, while also engaging him in conversations about the research process and sociological and methodological discourses, requires a working relationship of open communication and open-mindedness for all parties involved. During the course of thinking through this paper about methodology, Jennifer, Ron, and Jon have opened up discussion about the experience of doing this work. This conversation revealed our mutual goals for the project and the need for continued vigilance about the power dynamics that are present in any research project.

Much to their gratification, Jon's response to Jennifer and Ron's putting down on paper their personal and analytical self-reflections was one of excitement and redoubled dedication to our work together. He sent an e-mail noting that he thought "we have something really special here," that our "project had become bigger than life," and that he hoped the book we were writing would strike "exactly the same tone [as] the paper." In their next interview session, Jennifer observed a positive change in Jon's demeanor: he seemed much more comfortable and bonded in an empathic relationship with her and more willing to open up new dialogues to discuss sensitive issues in his life. Having had a chance to discuss the experiences of interacting together, as well as expressing a shared commitment to upholding each other's objectives for the project, a more personal relationship had emerged.

The production of new knowledge, firmly rooted in experience and located in sociological context, requires not only mutual trust but clear goals for how do to the work of research and for whom that work is intended. In writing this paper, Jon had a chance to clarify his stance on why he felt that his story needed to be told. After sitting in the University Center on campus, he sent Jennifer an e-mail: "I was watching the students, and by looking in their eyes, they do not have the edge or grit that I do. I'm a unique story, yes, but people could learn a lot about 'The Eye of the Tiger,' a.k.a. how to get things done under any circumstances."

In their ongoing research with Jon, Jennifer and Ron hope to engage Jon with sociological ideas, without undermining his goal of helping him tell the story he wants to tell. It is a tricky balancing act for sociologists who have been advised, as Gubrium and Holstein (1999, pp. 569-570) suggest, that it is desirable for researchers to "allow indigenous voices [to] have their say" while not abandoning their scholarly obligation to "complement and contextualize the explication of informants' accounts, or nonaccounts, as the case might be." The challenge for us, as it is for all collaboration of this nature, is to enter Jon's world, a precious gift he has granted, without summoning it to judgment (see Langer, 1991). We need to maintain the two movements of the phenomenological stance—self-reflection and empathy (Papadimitriou, 2001)—in ways that speak to Jon's experience and empower him in the act of telling it, and in doing so also reveal our own situated professional discourses as we continue with this work. And first and foremost, we must heed Denzin's wise reminder for all those who are engaged in such qualitative research: that "our primary obligation is always to the people we study, not to our project … or discipline" (1989, p. 83). This is the project that we call methodological empowerment.

Works Cited

  • AAC Mentor Project. (2010). What is ACC? AAC Mentor Project at Penn State. Available at http://www.mcn.ed.psu.edu.
  • Akamanti, J. (2004). Back of the bus? I just want on the bus! SWS Network News, 21, 13-16.
  • Alexander, J. C. (1982). Theoretical Logic in Sociology: Positivism, Presuppositions, and Current Controversies. Berkeley: University of California Press.
  • Backscheider, P. R. 1999. Reflections on Biography. Oxford: Oxford University Press.
  • Baker, B. (2005). Let's not go back to the Flintstones. Speak Up, 20(2), 13. Retrieved from http://www.ussaac.org.
  • Bandura, A. (1997). Self-Efficacy: The Exercise of Control. New York: W. H. Freeman.
  • Barton, L. (2005). Emancipatory research and disabled people: Some observations and questions. Educational Review, 57, 317-327.
  • Berger, R. J. (2008). Agency, structure, and the transition to disability: A case study with implications for life history research. Sociological Quarterly, 49, 309-333.
  • Berger, R. J. (2009). Hoop Dreams on Wheels: Disability and the Competitive Wheelchair Athlete. New York: Routledge.
  • Berger, R. J., & Quinney, R. (Eds.). (2005). Storytelling Sociology: Narrative as Social Inquiry. Boulder, CO: Lynne Rienner Publishers.
  • Blissymbolics Communication International. (2010). Welcome to BCI. Available at http://www.blissymbolics.org.
  • Branfield, F. (1998). What are you doing here? 'Non-disabled' people and the disability movement. Disability and Society, 13, 143-144.
  • Charlton, J. I. (1998). Nothing About Us Without Us: Disability Oppression and Empowerment. Berkeley: University of California Press.
  • Clare, E. 1999. Exile and Pride. Cambridge, MA: South End Press.
  • Clarke, K., McConachie, H., Price, K., & Wood, P. (2001). Views of young people using augmentative and alternative communication systems. International Journal of Language and Communication Disorders, 36, 107-115.
  • Darling, R. B. (2000). Only for individuals with disabilities? ASA Footnotes, May/June, 6.
  • Denzin, N. K. (1989). Interpretive Biography. Newbury Park, CA: Sage.
  • Denzin, N. K. (1998). The new ethnography. Journal of Contemporary Ethnography, 27, 405-415.
  • Duckett, P. S. (1998). What are you doing here? 'Non-disabled' people and the disability movement: A response to Fran Branfield. Disability and Society, 13, 625-628.
  • Feucht, J. (2003a). American values in AAC: One man's vision. 2003 Edwin and Esther Prentke AAC Distinguished Lecturer speech. Available at http://www.aacinstiute.org.
  • Feucht J. (2003b). The Tan Car. Parker, CO: Profitable Publishing.
  • Feucht, J. (2005a). In the camp of depression (interview by Richard Ellenson). Speak Up, 20(2),13. Available at www.ussaac.org.
  • Feucht J. (2005b). Straight Talks from My Desk. Parker, CO: Profitable Publishing.
  • Fleischer, D. Z., & Zames, F. (2001). The Disability Rights Movement: From Charity to Confrontation. Philadelphia: Temple University Press.
  • Frank, G. (2000). Venus on Wheels: Two Decades of Dialogue on Disability, Biography, and Being Female in America. Berkeley: University of California Press.
  • Gecas, V. (1989). The social psychology of self-efficacy. Annual Review of Sociology, 15, 291-316.
  • Giddens, A. (1984). The Constitution of Society: Outline of the Theory of Structuration. Berkeley: University of California Press.
  • Gubrium, J. F., & Holstein, J. A. 1999. At the border of narrative and ethnography. Journal of Contemporary Ethnography, 28, 561-573.
  • Harris, J. (2010). The use, role and application of advanced technology in the lives of disabled people in the UK. Disability and Society, 25, 427-439.
  • Hill, K., & Romich, B. (2002). A rate index for augmentative and alternative communication. International Journal of Speech Technology, 5, 57-64.
  • Hockenberry, J. 1995. Moving Violations: War Zones, Wheelchairs, and Declarations of Independence. New York: Hyperion.
  • Hodge, S. (2007). "Why is the potential for augmentative and alternative communication not being realized? Exploring the experiences of people who use communication aids." Disability and Society, 22, 457-471.
  • Jacobs, B., Drew, R, Ogletree, B. T., & Pierce, K. (2004). Augmentative and alternative communication (ACC) for adults with severe aphasia: Where we stand and how we can go further. Disability and Rehabilitation, 26, 1231-1240.
  • Juette, M., & Berger, R. J. (2008). Wheelchair Warrior: Gangs, Disability, and Basketball. Philadelphia: Temple University Press.
  • Kitchin, R. (2000). The researched opinions on research: Disabled people and disability research. Disability and Society, 15, 25-47.
  • Langer, L. L. (1991). Holocaust Testimonies: The Ruins of Memory. New Haven, CT: Yale University Press.
  • Lasker, J. P., & Bedrosian, J. L. (2001). Promoting acceptance of augmentative and alternative communication by adults with acquired communication disorders. Augmentative and Alternative Communication, 17, 141-153.
  • Millar, D. C., Light, J. C., & Schlosser, R. W. (2006). The impact of augmentative and alternative communication intervention on the speech production of individuals with developmental disabilities: A research review. Journal of Speech, Language and Hearing Research, 49, 248-264.
  • Miller, F., & Bachrach, S. J. (1995). Cerebral Palsy: A Complete Guide for Caregiving. Baltimore: Johns Hopkins University Press.
  • National Association of Student Personnel Administrators. (1999). Bridges to Student Success: Exemplary Programs. Washington, DC: NASPA.
  • Neuman, W. L. (2011). Social Research Methods: Qualitative and Quantitative Approaches. Boston: Allyn & Bacon.
  • Oakley, A. (2010). The social science of biographical life-writing: Some methodological and ethical issues. International Journal of Social Research Methodology, 13, 425-439.
  • Oliver, M. (1997). Emancipatory research: Realistic goal or impossible dream? In C. Barnes & G. Mercer (Eds.), Doing Disability Research. Leeds, UK: Disability Press.
  • Papadimitriou, C. (2001). From dis-ability to difference: Conceptual and methodological issues in the study of physical disability. In S. K. Toombs (Ed.), Handbook of Phenomenology and Medicine. Netherlands: Kluwer Academic Publishers.
  • Ramazanoglu, C., & Holland, J. (2002). Feminist Methodology: Challenges and Choices. Thousand Oaks, CA: Sage.
  • Petersen, A. J. (2011). Research with individuals labeled 'other': Reflections on the research process. Disability and Society, 26, 293-305.
  • Reinharz, S. (1992). Feminist Methods in Social Research. New York: Oxford University Press.
  • Ryan, W. (1971). Blaming the Victim. New York: Vintage.
  • Scotch, R. K. (2001). From Good Will to Civil Rights: Transforming Federal Disability Policy. Philadelphia: Temple University Press.
  • Sewell, Jr., W. H. (1992). A theory of structure: Duality, agency, and transformation. American Journal of Sociology, 98, 1-29.
  • Shakespeare, T. (2010). "The social model of disability." In L. Davis (Ed.), The Disability Studies Reader. New York: Routledge.
  • Shapiro, J. P. (1993). No Pity: People with Disabilities Forging a New Civil Rights Movement. New York: Times Books.
  • Smith, D. (2005). Institutional Ethnography: A Sociology for People. Toronto: Altamira Press.Texas Statewide Leadership for Autism. (2009). Augmentative and alternative communication. Texas Guide for Effective Teaching: Augmentative and Alternative Communication. Available at http://www.txautsim.net.
  • Zarb, G. (1992). On the road to Damascus: First steps towards changing the relations of research production. Disability, Handicap, and Society, 7, 125-138.

Endnotes

  1. There has been some debate in the field of AAC as to whether early use of AAC may result in a decline in natural speech abilities of children with developmental disabilities. But current research does not find this to be the case (Millar, Light, and Schlosser, 2006).


    Return to Text
  2. More complex systems allow quadriplegic users to scan the device with their eyes.


    Return to Text
  3. Hill and Romich (2002) estimate that only a few hundred words comprise the large majority (85-95 percent) of most people's vocabulary. Extended vocabulary, which makes up the remaining 5-15% of communication, consists of thousands of words.


    Return to Text
  4. Currently this system, known as Blissymbolics, allows the use of some 4,500 authorized symbols, or Blisswords, which can be combined and recombined in countless ways to create new Blisswords. Blisswords, in turn, can be grammatically sequenced to form an expanding array of sentences (Blissymbolics Communication International, 2010).


    Return to Text
  5. For alternative views, see Akamanti (2004), Darling (2000), Duckett (1998), and Kitchin (2000).


    Return to Text
  6. Ron also conducted a broader study of the UWW wheelchair basketball program, documenting the life histories of over a dozen players across four generations of students (Berger, 2009).


    Return to Text
  7. Jon made it clear that there were some aspects of his personal life he would not talk about.


    Return to Text
  8. John Hockenberry (1995), who became disabled in a car accident, writes about an "Oprah Winfrey" show he watched, with Oprah interviewing four married couples, each with a disabled partner. "So there's one thing I wanted to know," Oprah asked of a wife whose previously able-bodied husband had been disabled in an accident: "[C]an he do it?" The wife responded, "Yes, he can, Oprah," and the "crowd burst into applause" (p. 92).


    Return to Text
Return to Top of Page


Copyright (c) 2011 Jennifer Flad, Ronald J. Berger, Jon Feucht



Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated. 

If you encounter problems with the site or have comments to offer, including any access difficulty due to incompatibility with adaptive technology, please contact the web manager, Maureen Walsh. Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.

ISSN: 2159-8371