Abstract

Siebers (2008) calls for a move beyond the social model of disability toward a "theory of complex embodiment" that allows for acknowledgment of the "negative" aspects of embodied disability and, in turn, allows for the adoption of a disabled identity. I answer Siebers' call by analyzing the discourse of one disabled individual—my father, a man with multiple sclerosis—and discussing his complex identity construction as a disabled person who sees the disability as a source of strength and knowledge as well as a source of suffering. Returning to that on which the social model is built—rhetoric—I argue that his rhetorical construction of a disabled identity is necessary and provides evidence for the need to step beyond the social model as currently conceived.

For the past ten years I have watched my father1 experience a series of transformations. The physical transformations came first and were followed, inevitably, by mental transformations, the latter prompted by the former and accepted by my father with reluctance. His physical changes were gradual and mysterious. First, at about age forty, he experienced numbness in his left leg along with fatigue; later, pain and numbness would travel up the left side of his body, affecting his arm and hand. He noticed his left foot gave out occasionally while walking, almost like the sidewalk was consistently uneven on the left side, but these instances were too common to be a civil engineering mistake. Countless visits with doctors led him finally to one with a medical diagnosis of multiple sclerosis.

As the disease progressed, he begrudgingly gave up 70-hour workweeks during tax season (he was an accountant); as his fatigue worsened, he withdrew to working just Mondays through Wednesdays, needing the five-day weekend to recuperate. After several years of sustaining a work schedule that sapped all of his tightly limited energy, he retired from his firm at age 49. He should have been climbing the peak of his career, but his retirement was long overdue.

The mind-body divide that characterizes my father's disparate physical and mental transformations becomes blurred in his current conception of himself as disabled. The conception itself is blurry, as at times my father identifies as a proud disabled person while at other times he figuratively leaves behind his walking stick (it's never a "cane") and rhetorically reconstructs himself as the working person he knew so well. The complexity of my father's experience as a disabled person (Barton, 2001) mirrors the complexity of his identity construction.

Much of the research in Disability Studies has focused on the social model of disability as defined against the medical model. The medical model of disability is the conception that disability is "located" within the body as a biological defect (Oliver, 1996, p. 32). The social model, to the contrary, argues that disability is situated in the social environment, which unfairly marks some bodily traits as disabilities (Siebers, 2008). Disability Studies is rooted in social model theory (Corker & French, 1999), yet many scholars have found the social model of disability problematic. The model privileges the understanding of disability as a socially constructed phenomenon, often at the expense of a full understanding of the impairment that goes hand-in-hand with disability. By seeing disability as socially constructed, the social model places the focus on the environment in which a differently abled person functions, and how that environment imposes limits and restrictions that underscore the person's "disability," while backgrounding the body of the disabled person. Michael Oliver (1996)2, "one of the originators of discussions about disability models" (p. 30), notes that "disablement is nothing to do with the body. It is a consequence of social oppression" (p. 35).

The social model's identification of disability entirely outside of the body is problematic for two related reasons (Siebers, 2008). First, by situating disability within the "environment" surrounding an individual (p. 25), the social model ignores any impairment that the individual body possesses. When we view disability entirely as a social construction, we "[argue] that disabling environments produce disability in bodies and require interventions at the level of social justice" (p. 25). This approach, while productive in recognizing the impact arbitrary social judgment can have on marking some and not others, "leaves [embodiment] out of the picture" (p. 25). One problem with the social model is that it, by definition, must exclude an awareness of disability as "located" in the body; that is, it must exclude an awareness of impairment as part of disability. Ignoring impairment as inextricably linked with disability also ignores the real, physical obstacles that disabled people face, including "pain," "aging," and fatigue (p. 25). Yet impairment, as a source of daily struggle and frustration for many people with disabilities, is an undeniable part of many people's lives.

Scholars have written extensively about these problems with the social model. Corker and French (1999) say the separation of impairment from disability in the social model implies "that disability and impairment are not related," effectively leaving out impairment entirely, even though impairment is part of what contributes to socially constructed disability (p. 2). Llewellyn & Hogan (2000) note clinical researchers object to the social model because it shrugs off the fact that disability and actual physical or mental impairment are two parts of a whole. Rhodes et al. (2008) also argue for a more complex understanding of disability than the social model allows, noting that, in its dichotomous positioning opposite to impairment, it, like the medical model, focuses too much on impairment: "The disabling effects of epilepsy are not primarily physical or primarily social, but range along a continuum and will be different for different people in different contexts and at different times" (p. 393).

Excluding impairment from a model of disability leads to the second problem with the social model. By denying impairment, the social model discourages individuals with disabilities from identifying as disabled, which is problematic. For example, Couser (2001) discusses how people with disabilities represent themselves in his review of disabled people's autobiographies. He is disappointed by the lack of "emancipatory" language in these writings, arguing that "cultural constraints limit the counterhegemonic potential of disability memoir" (p. 89). Couser cites, for instance, Oliver Sack's A Leg to Stand On, noting that "his account reinscribes, rather than erases, the line between disability and nondisability" (p. 80). What is not considered in Couser's analysis is the potential importance of Sack's emphasis of that line; perhaps that difference, one that is erased with the social model of disability, is an important part of the disabled person's identity. As Siebers and others have discussed, and as I show in the analysis of my participant's speech, this identification is healthy and at times necessary: "people with disabilities have a better chance of future happiness and health if they accept their disability as a positive identity and benefit from the knowledge embodied in it" (Siebers, 2008, p. 27).

Siebers (2008) has made the call to rectify the social model's problems by introducing a new approach to thinking about disability that accounts for the impairment inherent to disability. His "theory of complex embodiment" acknowledges that disability resides in part in the ways the social environment restricts or marginalizes a differently abled person while "[emphasizing] as well that some factors affecting disability, such as chronic pain, secondary health effects, and aging, derive from the body" (p. 25). This theory sees disability as constructed partly through societal reactions to differently abled bodies and partly through the real, physical pain and/or impairment that disabled bodies suffer. Siebers argues that "construction" must be understood to "[possess] both social and physical form" (p. 30).

I argue alongside Siebers (2008) that disability theorists must adapt the social model of disability in favor of a more sophisticated understanding of disability as it exists in the bodies of differently abled individuals:

Some scholars complain that the medical model pays too much attention to embodiment, while the social model leaves it out of the picture. Without returning to a medical model, which labels individuals as defective, the next step for disability studies is to develop a theory of complex embodiment that values disability as a form of human variation. (p. 25)

In Siebers' "more nuanced and complicated" (p. 5) understanding of disability, instead of ignoring the realities of disabilities in the lives of disabled people, the field must be able "to resist the positive by acknowledging the negative," an activity that the social model disallows (p. 5). While the social model underscores the positive aspects of disability, such as the pride one has in being Deaf, it leaves little room for the negative aspects of disability, such as the pain, fatigue, and other ailments one encounters with specific impairments (Siebers, 2008). The social model embraces the concept that disability is "located" in society, yet it may fail to consider that individuals society labels as disabled still deal with impairment that is present—physically, mentally, and emotionally—in their lives. Yet even as we revise the social model, we must return to that from which the social model stems—rhetoric—to construct a more sophisticated understanding of disabled identity (Wilson & Lewiecki-Wilson, 2001). Because humans use discourse to construct their identities and represent their worlds, the language used by people with disabilities contains much information about how they perceive themselves and can serve as rich sets of data. Analysis of the language of people with disabilities, then, can reveal complex yet precise discursive constructions of identity and can contribute to our understanding of disability.

In this article, I show how my father's discourse, as examined in an interview transcript, reveals that he is in the process of reconstructing his identity as a disabled person and that his disability is a source of strength as well as a source of suffering. That which forced him to give up his identity as businessperson is his disability; it only makes sense that the disability becomes part of his new identity. The analysis shows how my father uses discourse to position his disability as a source of strength and as a welcomed identity, as well as a source of suffering and a regrettable condition. He thus oscillates between accepting a new, disabled identity and re-constructing fondly the identity of the former, healthy, working businessperson. This complex, and, I argue, necessary identity reformulation provides ground on which to call for movement beyond the social model of disability. Specifically, I look at three elements of my father's discourse:

  • The speaker's interchangeable use of the pronouns "I" and "you" when discussing himself (Fairclough, 2003);
  • The speaker's use of intertextuality (Halliday, 1978; Gee, 2005), or use of quotations, when describing his own and others' speech;
  • The speaker's nominalization of the disease (positioning of the disease as a noun and as the actor in an utterance) and subsequent representation of the disease as having agency and acting upon the participant (van Leeuwen, 1996).

Methods

I audio-recorded and transcribed the speech of my father, Dave, to analyze his discourse. Instead of asking him questions in an interview-like fashion, I maintained an open-ended approach to the study and posed to him a single prompt: "Talk to me about your disability." This allowed him to select which topics to discuss or to not discuss, preventing me from driving the conversation and heavily impacting the discourse.

I transcribed the 22-minute conversation, which consisted mostly of his monologue about various aspects of his disease (see Appendix A for transcription conventions). I divided the data into T-units (about 280 total) to break it down into short, manageable pieces. A t-unit is an independent clause and any auxiliaries attached to the clause, such as a dependent clause; for instance, a spoken utterance that appears to be a compound sentence would be divided into two t-units. I chose T-units as my method of segmentation (over clauses, words, or another form) because the larger T-unit allows one to more easily study nominals, which is an element I explore in this study (Geisler, 2004). Transcript conventions, adapted from Gail Jefferson (1984), are located in Appendix A, and the full text of the transcript is located in Appendix B.

I took a grounded theory approach to creating my coding rules, letting the data "speak to [me]" and tell me what phenomena were present and significant in the discourse (Geisler, 2004, p. 60). While there are almost countless phenomena one could explore in this data set, three elements emerged as relevant because they appeared consistently and in "interesting" patterns (Huckin, 1992, p. 91), and they shed light on identity construction: Dave's use of "I" and "you," his use of intertextuality, and his nominalization of the disease.

Analysis & Discussion

Based on my analysis of the coded data, I assert that the speaker is in a process of re-identifying himself. The speaker appears to be negotiating between a former self whose identity resided in the pride of his work as an accountant and as a businessman, and a new self who embraces a disabled identity (Siebers, 2008). This negotiation between the two selves is evidenced in the following analysis.

'I' & 'You'

At various points Dave transitions from using "I" to reference himself to using "you," as in, "You can't worry about what you can't do" (Appendix B, line 47). This switch from the "I" to the "you" in discourse can have several implications. Patricia O'Connor (1994), in her research studying the language of prisoners, found that the "you" in storytelling may serve as a way to distance the speaker from the events of his speech. She argues that if the speaker talks about an event that happened in the past, the use of "you" also can serve as a way to distance the speaker from a former "self." In his construction of his identity, Dave's alternate uses of "I" and "you" reveal that he distances himself from some identities and pulls himself closer to other identities. In the instances described here, he distances himself from identities related to his disability and pulls himself closer to identities that relate to his former working self.

In the first lengthy use of "you,"3 the speaker tells his story about how he dealt with the diagnosis of the disease in his mid-40s. When he transitions into talking about how he had to retire as a result of the progression of the disease, he also transitions from using "I" into using "you." The speaker "transitions" in the truest sense of the word, alternately using "I" and "you" for a couple of lines before reverting solely to the use of "you." He finally withdraws almost all use of "I" in discussing how the disease forced him to stop working and doing the things he used to be able to do (emphasis mine):

28and I just absolutely loved what I did but … um … so ah um …

29I kept trying to push it …

30and ah … and then finally realized that I could no longer do that

31so anyway, ah, applied for disability policies,

32fought that war, those, those battles

33and won those,

34and, and ah … and retired

35and what you find what you find about that is that you have to …

36when you're faced with a situation where you're where you're going to retire …

37and I don't know if it's true it's probably true when you're going to retire anyway

38but you have to, understand that, all of the things that, made you think that you felt that were important in your life that you're going to let those things go …

39an', and that's all fine,

40but ah … the other thing about this disability is that … um … when you're used to getting, when you're used to doing what you wanna do … and … do it when you want to do it … whatever activity that might be … you find that your body tells you …

41"That's all fine well and good,

42but you ain't gonna do that today …

43or you're not gonna do that now,

44or you're not gonna do that ever" …

When the speaker reaches the point in his narrative where he recalls himself being forced to retire, he switches over to the use of "you" in reference to the self. The use of the pronoun "you" allows the speaker to "[locate] the memory at a safer remove" (O'Connor, 1994, p. 59). The speaker appears to use "you" to distance himself from what we can interpret to be a painful memory of being required to retire due to the body's inability to continue to work. He thus distances himself from the identity of a person who is disabled and must relinquish his work due to the toll his disability takes on his body.

In the second lengthy use of "you," the speaker also employs the pronoun as a distancing tool, but in a different way. His use of "you" allows him to talk about a former self that apparently existed shortly after the diagnosis:

140and … I- I've found that you can't educate people … on what you have …

141you find that … a- a lot of people will give you lip service and say, "If there's anything I can do for you let me know"

142and that's a nice way of- of saying, "I'll see ya around" …

143um I've also found that … you cannot educate someone … about a chronic disease …

In this second example, the speaker uses "you" to distance himself from the former identity of someone who is disabled and heard and understood in his community. The speaker says that he no longer tries to construct himself in this way, indicating that he has moved on from being a disabled person who wants to be heard and understood as such. Instead, he accepts his disability in relative silence, and in mutual understanding with only those closest to him: "the only people that really understand that are … those people who have lived with someone … who has a chronic disease" (Appendix B, line 144).

Finally, the speaker jumps back and forth from "you" to "I" in a discussion about how he identifies himself. His topic choice is telling, too, and further indicates that he is struggling with a transition into a new identity. The speaker says that "everyone has their own little … commonality group," meaning that people who have like interests or like situations "stand" for their communities. Dave speaks of two commonality groups: that of accountants and that of "handicapped" people. Interestingly, he uses "I" when discussing the "commonality group" of accountants, and he uses "you" when discussing that of "handicapped" people:4

242everybody has their own little flag they wave

243and ya know I guess that once since I'm in that little group now,

244everybody has their own little groups they get involved in, their commonality …

245when- whe- you know when you get in your little commonality group it's like you know … y'know …

246I'm a licensed CPA [certified public accountant]

247so y'know I'm in my little commonality group of CPAs

248and we all go, "We are CPAs"

249and y'know, "We are very good at this …

250this is why

251and this is why you do this and yadda yadda yadda"

252and wah, and well when you're handicapped and you have your little blue hang tag, ya know and your little handicapped sticker and you go and someone comes out and they're in the handicapped spot and ya know

Dave then concludes his story by describing how he sometimes scolds people who park in handicap spaces without handicap parking permits. In the example above, Dave's use of "I" and "we" when discussing the "commonality group" of CPAs shows that he still, at times, may identify as a practicing CPA, and the use of "I" instead of "you" shows that he pulls himself closer to that identity. Conversely, Dave uses "you" when discussing his new "commonality group" of handicapped people. By distancing himself from the new identity of a "handicapped" person through use of "you" and recalling or reliving the identity of a CPA, Dave shows that he struggles with this identity transition. What seems contradictory here is that Dave uses "I" when he identifies as a CPA, but in the example discussed above, he uses "you." This discrepancy can be explained. Dave uses "you" in the first example to distance himself from the identity of a retiring CPA—a person who is working but who is forced by his disability to retire. In the second example, Dave uses "I" when he identifies as a working CPA, an identity with which he seems to associate health and non-disability. While both identities relate to Dave's work, only the latter identity is one with which he gladly identifies, as shown through his use of "I", because it represents his identity pre-disability.

In this section, the discussion of his use of "I" and "you" shows how Dave distances himself from the identity of a disabled person forced to quit work as well as from the identity of a disabled person who wants to be understood in his community; he also pulls himself closer to the identity of a proud, working person. In the next section, a discussion of his use of intertextuality will show how Dave confidently identifies as disabled, using language to construct an identity of a disabled person who gains specialized knowledge and strength from his disability.

Use of Intertextuality

Throughout his monologue, Dave uses quotations to indicate what he and others have said or would say in given situations. Quotation usage in discourse is a form of intertextuality (Gee, 2005; Halliday, 1978) that functions as a way for a speaker to selectively recall conversations (Clark & Gerrig, 1990). By selectively recalling some parts of conversations and leaving out others, speakers may use intertextuality to relay discursive constructions that comport with the identities the speaker wishes to construct for himself and for his conversational partners. Dave typically uses quotations throughout the monologue to relay a general conversation that he has had with anonymous people in the past. I argue that in these conversations Dave attempts to construct an identity of a disabled person who has uncommon knowledge about his disability and who stakes his identity within the exclusive realm of that knowledge:

158but then when they ask you, "Well tell me about MS"

159and after about the fifth sentence …

160you know and- and you try and be brief and not too detailed …

161ya know, they really don't wanna know …

162so … I don't answer 'em anymore …

163they say, "Tell me about MS"

164you go, "Yeah, well ya know, it's just kind of a pain in the ass disease,"

In this excerpt, Dave constructs a fictional conversational partner as someone who is uninterested in his disease, and he constructs this identity likely from the interactions he has had with people over the years who have asked him about it. He reveals that he is aware that most people are not interested in the details of his disease, and he lets go of wanting to be heard and understood. Instead, this exchange shows he exerts independence as a disabled person, as he abandons the desire to have others co-experience the disability with him. He foregoes the explanation of symptoms with his dismissive quotation, "Yeah, well, ya know, it's just kind of a pain in the ass disease," thereby establishing himself as comfortably independent in experiencing the extent of his symptoms on his own. This independence in his disability appears to serve as a source of pride in his exclusive knowledge because he confidently shrugs off others' questions, knowing he is the only person within that conversation who has the capacity to fully understand the impact of MS. As a source of knowledge and independence, the disabled identity is one that Dave seems to take on with pride. These are "positive … valences" of disability, as they show Dave is "comfortable with who [he is]" (Siebers, 2008, p. 4).

In another discussion, Dave again creates the character of the ignorant "other" and plays off of this ignorance with a bold, emphatic comeback. In this conversation, Dave discusses how the heat impacts him significantly more than it does non-disabled people, and how most people don't understand this strange element of his disease. He quotes the anonymous "other" as trying to convince him to go somewhere with him or her, but he responds that he must exit the air conditioned house and sit in a hot car in order to get to the air-conditioned destination, a set-up that is unbearable. He emphasizes how his fictional counterpart in this conversation is ignorant to the heat's impact on him. In his constructed response, he underscores his specialized knowledge about his disability and he uses this knowledge as a platform from which to mount a persuasive argument:

194and someone says, "Well c'mon how bad can it be" …

195well … all I can tell you is walk the mile …

196if I tell you, "You wanna go to the mall"

197and you say, "Sure"

198and I'll say, "Okay well all you have to do is walk across fifteen feet of hot coals to get there"

199is that ok with you?

200"c'mon

201it's only fifteen feet …

202you can do it

203it's only fifteen feet

204how bad can it be?

205it's only fifteen feet

206c'mon,

207fifteen feet in your bare feet

208c'mon

209fifteen feet

210fifteen feet

211c'mon

212it's only fifteen feet

213hot coals,

214fifteen feet,

215c'mon,

216you can do it,

217c'mon,

218c'mon …"

In this exchange, Dave constructs the other as ignorant to his symptoms, and he constructs himself, first, as someone with specialized knowledge, and, second, as someone who has strength to bear an amount of pain that healthy people would find intolerable. He constructs the other as ignorant by allowing his interlocutor to fall into a question-and-answer trap with the response, "Sure," to his question, "Do you wanna go to the mall?" This opens Dave up to chastise at length the interlocutor for having implied that Dave's incompatibility with hot weather was minimal. By linking his symptoms with walking across hot coals and equally minimizing the pain associated with that activity, Dave underscores the other's ignorance as well as his own specialized knowledge that stems from his disease. The metaphor also serves as a way for Dave to emphasize the strength that results from his disability: he is able to tolerate levels of pain (e.g., walking across hot coals) that most people typically do not have to encounter. In this way, Dave constructs himself as someone who is disabled and as a result of his disability has strength and knowledge that non-disabled individuals do not.

Nominalization

A final element of the discourse serves to complicate Dave's identity construction, showing how Dave characterizes the disease as having power over him. Frequently in the discourse, Dave nominalizes the disease, the body, and elements of the disease and the body, by using words such as "disease" and "body" as the subjects of utterances. These terms become the "actors" in Dave's utterances, and he therefore becomes that which is acted upon, or the goal (van Leeuwen, 1996, p. 43), giving the disease agency and constructing Dave as passive. Dave's lack of agency shown through nominalization reveals the challenge in re-constructing himself as disabled while seeing the positive in the disability. Several utterances throughout the discourse reveal the nominalization of the disease:

8so … I got to do a lot of things … before … this thing … bit me in the … proverbial ass … um …

16and decided that ah … that I would either work until I retired, or until 'a disease … forced me to … quit working,

18because at that point in ti- in time the disease started to get … pretty aggressive

19and it ah … it took away my energy fairly quickly …

40but ah … the other thing about this disability is that … um … when you're used to getting, when you're used to doing what you wanna do … and … do it when you want to do it … whatever activity that might be … you find that your body tells you …

41"That's all fine well and good,

42but you ain't gonna do that today …

43or you're not gonna do that now,

44or you're not gonna do that ever" …

52um … now … there are times when the di- when- when this particular disease will still …

53I call it the Dr. Jekyll Mr. Hyde syndrome

54where they'll still come up and ((clears throat)) make you a crabby person …

62the disability makes your day shorter … than a … normal person's day …

91you know the, the disease gives me pain, every day, from my knees to my feet,

By turns, the disease bites Dave in the ass, forces him to quit work, takes away his energy, gives him pain, shortens his days, and makes him a "crabby person." Additionally, the disease becomes aggressive and tells Dave that he cannot do the things that he used to be able to do—now or ever. As a violent, heartless actor in these utterances, the disease has the control and the power over Dave, who is powerless and helpless. These instances in his speech indicate that Dave also "acknowledges the negative" in his disability (Siebers, 2008). The disability causes him much pain and fatigue, among many other physical and psychological impairments. Siebers' complex theory of embodiment allows for this acknowledgement because it allows for a disabled person to discuss the embodied problems that can come with disease and disability. His theory better encapsulates Dave's identity construction than the social model alone.

Conclusion

These linguistic elements reveal the complicated nature of Dave's identity construction. He is in a process of re-constructing his identity from a strong, capable, employed person, to one who is disabled and sees his disability as a source of strength and knowledge. Evidence of this transition exists in the tension that is revealed in his language—he alternately identifies as a non-disabled and employed person and as a disabled, yet able, person. He also takes up and abandons identities located in between these poles, revealing a former identity of being disabled and wanting to be heard and understood in his community, and, at times, revealing an identity that is helpless and weak against the disease and its progression.

I conclude that the complexity of Dave's identity construction that parallels the onset of his disease serves as proof that disability as identity is complicated, sometimes contradictory, and yet necessary. Siebers (2008) calls for "more nuanced" attitudes toward disability:

If the field is to advance, disability studies needs to account for both the negative and positive valences of disability, to resist the negative by advocating the positive and to resist the positive by acknowledging the negative—while never forgetting that its reason for being is to speak about, for, and with disabled people. (p. 5)

Dave's discourse shows that he sees the positive in his disability when he proudly identifies as disabled and when he shows that his disability is a source of unique knowledge and strength. His discourse also shows that the disability is negative because of how it physically impairs him and how it has disrupted a former identity that he loved. The at times contradictory discursive phenomena reveal that Dave does not possess a secure, unwavering identity as a contentedly disabled person, but that he oscillates from finding both the good and the bad within an identity that he is still in the process of adopting.

The new identity of the disabled person is one that perhaps Dave needs, even though it is one that is not given much room in the social model of disability. Because the social model emphasizes that disability exists in the social environment, identifying as disabled is almost impossible: "disability or impairment cannot serve as a foundation as these are empty and constructed" (Watson, 2002, p. 510). Yet Dave clearly moves toward a disabled identity, and his circumstances seem to have led naturally to this identity formation. That which forced Dave to relinquish his former identity as a businessman is his disability and his disability alone; that he adopts the identity of a disabled person now, albeit with difficulty, appears to be a natural progression of his identity construction. Because it is real impairment that has forced Dave to reconfigure his life and his self, it only makes sense that disability is part of his new self-concept.

The social model of disability has provided an important base on which Disability Studies has grown (Corker & French, 1999). It remains an important aspect of Disability Studies scholarship, thinking, and political action. In its radical stance, though, it may dismiss impairment as having real impact on people's lives and the frustrating "dis" in disability (Linton, 1998) that provides some disabled people daily pain, fatigue, and physical hardship. In constructing future models for talking and thinking about disability, it is important to reconsider the concept of "inclusion," a tenant truly at the heart of Disability Studies, even if inclusion means accepting that which appears at first to be oppressive, "disability," as identity.

Appendix A: Transcript Conventions

The following list includes the symbols used in the transcript and their meanings. Transcript conventions were adapted from Gail Jefferson's approach (1984). I estimated lengths of pauses and represented them with symbols (e.g., comma, dash) instead of timing pauses in tenths of seconds because lengths of pauses were irrelevant to this analysis. I avoided use of capital letters, except in places where the speaker clearly constructed a quotation, as well as the use of periods, because I did not want to impose and potentially misrepresent starting and stopping points for utterances. Finally, as indicated in the body of the article, I broke the text into t-units, or independent clauses and additional auxiliaries. T-units sometimes had to be interpreted based on my understanding of implied subjects of utterances.

Key to Punctuation Used in Transcriptions
,represents a short pause
-represents an abrupt, short pause
represents a long pause
(())represents non-verbal sounds, such as laughter, coughing, etc.
" "indicates the speaker's presentation of quotations
[]provision of context clues (e.g., speaker's tone)
Dindicates the first line in a series of Dave's utterances
Yindicates the researcher's utterances

Appendix B: Transcript

The following is a representation of the transcript in its entirety, minus short introductory and concluding remarks.

1 Dwell let's see …

2it's just there's like a lot of different areas th- not,

3you know I don't know what- what- direction you want me to go,

4but you know I- I- dis- like I said, I, I you know, I'st I- I- I'm fortunate from the standpoint that I- I if anybody's fortunate to get a disability, I don't think anybody's fortunate, but, to get a disability [joking tone]

5 Y((laughs))

6 Dbut I mean I- I like I'm the guy on the MS bell curve that got it … on the latter part of the bell curve …

7so instead of bein' ya know nineteen or twenty-two … when I was diagnosed, um, I was in my mid-forties …

8so … I got to do a lot of things … before … this thing … bit me in the … proverbial ass … um …

9and then when I was diagnosed ((clears throat)) you know I knew something was wrong when I went in and ah or suspected something was wrong when I went in and ah …

10I was misdiagnosed for five years by various different doctors

11and then when I finally went to a neurologist … the neurologist that I went to got it right within ten minutes …

12or she knew within ten minutes what I had,

13didn't tell me but ah ran a couple of tests just to verify it

14and then ah … called me with the news which pretty much was devastating because I … I knew the long term effects of the disease … ah …

15so at that point in time … ah, I was, I got mad at the world for about a year and a half … ah …

16and decided that ah … that I would either work until I retired, or until 'a disease … forced me to … quit working,

17and that's what happened first …

18because at that point in ti- in time the disease started to get … pretty aggressive

19and it ah … it took away my energy fairly quickly …

20so um … at age … just after I turned forty-nine years old I had to … retire …

21uhh actually I probably should've retired a year earlier,

22but I pressed it … which probably isn't something unusual for anybody that's self-employed ((sniff)) ah

23because anybody that's … self-employed … um … ya … ya-you usually get up in the morning and go 100 miles an hour an' …

24when you come home ya ((sniff)) ya slow down to fifty but um …

25because I'm always one that says,

26"You do what you like,

27and you like what you do"

28and I just absolutely loved what I did but … um … so ah um …

29I kept trying to push it …

30and ah … and then finally realized that I could no longer do that

31so anyway, ah, applied for disability policies,

32fought that war, those, those battles

33and won those,

34and, and ah … and retired

35and what you find what you find about that is that you have to …

36when you're faced with a situation where you're where you're going to retire …

37and I don't know if it's true it's probably true when you're going to retire anyway

38but you have to, understand that, all of the things that, made you think that you felt that were important in your life that you're going to let those things go …

39an', and that's all fine,

40but ah … the other thing about this disability is that … um … when you're used to getting, when you're used to doing what you wanna do … and … do it when you want to do it … whatever activity that might be … you find that your body tells you …

41"That's all fine well and good,

42but you ain't gonna do that today …

43or you're not gonna do that now,

44or you're not gonna do that ever" …

45so … ((sigh)) you have to … reconcile that … with yourself … and … come to the realization that you can't … fight … the fact that … you can no longer play golf or that you can no longer run or that you can no longer … walk up … long hills …

46and that's okay …

47and you can't worry about what you can't do anymore because if you focus on the things that you can't do … it just becomes self-destructive

48so what you have to focus on … are the things that you can do,

49and there are a lot of things that you can do …

50and it's you'll actually surprise yourself with the things that you can do … that are very constructive … and ah very rewarding …

51and those are the things that you focus on …

52um … now … there are times when the di- when- when this particular disease will still …

53I call it the Dr. Jekyll Mr. Hyde syndrome

54where they'll still come up and ((clears throat)) make you a crabby person …

55not that you wanna be

56but it's just it is what it is …

57um you try not to be

58but ((clears throat)) you know if you're standing there talking to someone and there are … sixteen wasp… biting on your thigh … it's really hard to be pleasant and smiling …

59at at i-if something like that's occurring to you … and when you have something like I have sometimes it feels like there are sixteen wasp … biting inside your body … even though you look fine …

60so … you can't always be … the smiley-face guy … ((laughs))

61sometimes it's hard to do that … um …

62the disability makes your day shorter … than a … normal person's day …

63um … my days usually consist of- of

64if I get up with my wife in the morning at five o'clock in the morning

65that's what time she gets up

66if I get up at five

67if I wanna get out of the house usually I can't get out of the house any earlier than six thirty

68normally it's seven o'clock because my body just doesn't work like it used to work,

69so it takes me a couple of hours to kinda like get to the point where I can leave,

70and … then usually um no matter what I do in the morning if it's a good day, if it's a day that I can get out I'm usually like spent by noon …

71so I've gotta usually be back home by noon … because I'm exhausted …

72and I sleep from like one o'clock until three-thirty or four …

73and then when I wake up it takes me an hour sometimes an hour and a half to … get back to … a point where I'm … functioning … without feeling too lethargic …

74um… an' nen ah, an' nen we get some dinner

75an' nen ah an' nen I'm usually okay for the evening although I may or may not want to do … something small,

76and that's kinda my day,

77so my days are, you know,

78my days of working ten hours straight in a in a in a as a partner in a CPA firm have gone from … ya know, doin' that, five or six days a week and even seven days a week in tax season to- to going this, is quite a change,

79eh, ya know … it's just it's just different … um …

80but sometimes when it's sometimes when you get to … y-y-you know, "Gee, I feel sorry for Dave," I go to my neurologist's office

81and I walk pe- watch people come in in wheelchairs-wheelchairs …

82and nen, dey wheel some people in there in beds,

83and they're in basically catatonic states …

84an' I look at Dave and say, "Ya know I can still walk with a cane …

85I can still take myself out in the woods and go hunting …

86I mean these people can't get out of bed …

87I don't gotta do that …

88I live in a nice house …

89I have healthy children" …

90eh, I mean … it's all relative … so … from that standpoint, so… ah …

91you know the, the disease gives me pain, every day, from my knees to my feet,

92every day I have pain in my, in- from my knees to my- my feet …

93um … the only thing that really helps … that is a couple of shots of crown royal ((laughs))

94 Y((laughs))

95 D and that's the truth …

96um, two shots of crown royal will ah, will make that pain go away …

97I've asked my neurologist why that is,

98and he says it takes my tolerance to pain to the level where … I can't feel it anymore…

99but I have to watch that because you know, you, you drink too much you turn into a alcoholics of course, an alcoholic,

100um but the medication that I take my liver …

101um, my liver cleanses et- all of the mediations that I take, especially the injections that I take, the Rebif,

102so you can't … put too much pressure on your liver

103or you're gonna be on the list of … you know … hey-I-need-a-liver guy …

104and I don't need to be on that list,

105I got too much other shit to do,

106so … um I don't wanna I don't wanna limit myself any more so, you know …

107and then there's times I have headaches,

108like right now I have a headache …

109so it's because I was out last night with some friends

110and I drank crown royal … so …

111and then I came home

112and I had to take a- a

113((clears throat)) last night was my shot night

114so I you know I had some shots

115and I came home and had a shot

116 Y ((laughs))

117 Dso ((cough)) today I have a headache

118and I'll probably have a headache all day …

119and it's just nothing I can do about it um …

120it's just life in the big city …

121so … but I have some mobility aids that get me around

122ya know I- I walk with a walking stick

123not allowed to call it a cane until I turn sixty …

124I have my modified easy go golf cart to get me around in the woods … when I go hunting …

125and I have my scooter … which gets me around … big places and … places that I need to go with that

126and they really help…

127and I've tossed all of my manhood aside … when I use them,

128and I just don't care anymore …

129and ah and that's how it is and um …

130I try not to, I-I've discovered probably more recently than anything I try not to um educate people … as to … the effects of MS …because MS is always,

131I wake up every day with MS,

132I go to bed every night with MS,

133MS is always here

134I'm always in pain

135I'm usually tired … um …

136MS affects me every day and every minute of my life …

137ah, I- I- you- your brain can block out a certain amount of the pain for a certain time period

138but … when you relax and sit back your brain also says, "Okay I'm tired of this, too" …

139and then the pain will come through,

140and … I- I've found that you can't educate people … on what you have …

141you find that … a- a lot of people will give you lip service and say, "If there's anything I can do for you let me know"

142and that's a nice way of- of saying, "I'll see ya around" …

143um I've also found that … you cannot educate someone … about a chronic disease …

144and the only people that really understand that are … those people who have lived with someone … who has a chronic disease, or … who have a close relative … a brother, sister… ah … or a close friend … who has … a chronic disease …

145those people understand … um … what it's like … to …

146or- or when I say, "understand," they probably have the closest impact of what it's like to see somebody live daily … with a chronic disease …

[lines 147-155 removed to maintain anonymity of an individual mentioned]

156you know because everybody has their own … gig

157and everybody does their own thing

158but then when they ask you, "Well tell me about MS"

159and after about the fifth sentence …

160you know and- and you try and be brief and not too detailed …

161ya know, they really don't wanna know …

162so … I don't answer 'em anymore …

163they say, "Tell me about MS"

164you go, "Yeah, well ya know, it's just kind of a pain in the ass disease,"

165and that's kinda the answer that I give 'em …

166because if you start to give them details … then you give them information that they really don't wanna know …

167so … it's too hard to educate somebody about it … um …

168you know it's- it's a autoimmune disease,

169it's you know it's- it's the att- it's the white blood cells attacking your uh the myelin that surrounds that surrounds your nervous system,

170that's a part of it,

171it's also part of ya know there's always floaty things in your blood system that- that like

172you constantly have the flu

173and it's a matter of what degree you have it

174and ya know when I walk out into the sun the sun kills me every time I walk out unless the temperature's below sixty-five degrees and …

175ya know and it's like it's I have to deal with this everyday …

176and for you, when I say now when I say, "For you," for a normal person to walk outside on an eighty-two degree day when it's humidity and the sun's out you walk outside and go, "This is great,"

177but for me I have to I look outside

178and I look at the temperature

179and I have to think about that

180and I say, "Wait I gotta go get a ball cap" … 'cause if I walk outside without a ballcap on it's like ya know it's like vampire Dave

181like I start to melt you know

182I can't take it …

183and those days also you know well it's like, "Well okay well that's okay we're gonna go here because it'll be air conditioned when you get there,"

184it's like, "Yes but you have to understand that for me to get there I still gotta go like [unclear where the quote ends]

185here I'm in the air conditioning

186but I still gotta walk out to the car

187and there's heat from here to there

188and I get in the car

189and the car's hot

190and we start the car up

191and it's ya know that still sucks the life outta me …

192in order from me to get from here to there … I still gotta go thru little mini ovens.

193and those mini ovens suck the life outta me

194and someone says, "Well c'mon how bad can it be" …

195well … all I can tell you is walk the mile …

196if I tell you, "You wanna go to the mall"

197and you say, "Sure"

198and I'll say, "Okay well all you have to do is walk across fifteen feet of hot coals to get there"

199is that okay with you?

200"c'mon

201it's only fifteen feet …

202you can do it

203it's only fifteen feet

204how bad can it be?

205it's only fifteen feet

206c'mon,

207fifteen feet in your bare feet

208c'mon

209fifteen feet

210fifteen feet

211c'mon

212it's only fifteen feet

213hot coals,

214fifteen feet,

215c'mon,

216you can do it,

217c'mon,

218c'mon …"

219that's what it's like …

220don't tell me that it's only fifteen feet

221don't tell me that it's only from here to there,

222I'm telling you it's only fifteen feet of hot coals … ((laughs))

223now tell me what it's like,

224and you say, "Aw but you can't compare,"

225don't tell me what I can't —

226walk the mile,

227walk the mile,

228you do not understand what sunlight what eighty-five degrees and humidity does to me …

229you do not understand it …

230You- you- you cannot comprehend it because you have not walked the mile …

231but you ask any MS patient … you ask any neurologist that deals with MS … and they will tell you … what it does and how much energy it consumes a- a person with MS to go out in that kind of heat …

232it sucks … the life … out of you …

233so … walk the coals

234I'll walk the heat,

235and then we'll go to the mall together …

236 Y ((laughs))

[long pause]

237 Dand there are there are people out there that are very com- very accommodating to … handicapped individuals,

238and there are people out there that are just absolute assholes …

239and those that are absolute assholes when I have the … energy … I tell them about it …

240when I don't I just let it slide …

241so it's kinda like you know, you take, y-ye, y-you,

242everybody has their own little flag they wave

243and ya know I guess that once since I'm in that little group now,

244everybody has their own little groups they get involved in, their commonality …

245when- whe- you know when you get in your little commonality group it's like you know … y'know …

246I'm a licensed CPA

247so y'know I'm in my little commonality group of CPAs

248and we all go, "We are CPAs"

249and y'know, "We are very good at this …

250this is why

251and this is why you do this and yadda yadda yadda"

252and wah, and well when you're handicapped and you have your little blue hang tag, ya know and your little handicapped sticker and you go and someone comes out and they're in the handicapped spot and ya know

253an- an' I'll go into places

254and I won't use the handicapped thing unless I feel really bad … because there are people out there that are worse off than me,

255I mean there are elderly people that can't walk far b/c they have lung issues

256so I won't take the handicapped spot

257but you know but I'll come out

258and there are people parked in the handicapped spot

259and there's not a damn thing wrong with 'em,

260aw man I tell ya what you should've seen me i-in those,

261I've like I've like jumped all over people for that …

262I've taken my little walking stick

263I've rapped on the thing

264I said, "Don't you see dis sign here?"

265and I'm bangin' on it

266I said, "This see, see this sign right here, this big blue sign right here?" … ((laughs))

267I said, "This is handicapped,

268you got a handicapped sticker?" …

269I do

270I have

271I jumped all, jumped all over 'em. …

272mom says one of these times someone's gonna shoot me.

273 Y((laughs))

274 D that's okay …

275I shoot back …

276 Y ((laughs))

277 Dso … but that's just ya know one of the little side effects that ah … that happens …

278okay … that's all I can do right now

279 Y okay

280 D I'm outta gas

Works Cited

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Endnotes

  1. I would like to thank Dr. Sara Newman for invaluably constructive comments on earlier drafts of this article and this issue's editors and an anonymous reviewer for additional guidance. I would especially like to thank my father, who continues to be one of my greatest teachers.


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  2. Oliver argues that the social model does not discount bodily impairments that belong to some people with disabilities. Instead, "the social model is not an attempt to deal with the personal restrictions of impairment but the social barriers of disability" (p. 38).


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  3. The speaker reverts to "you" periodically and for an extended amount of time in two sections of the text. The first instance of the use of "you" spans about 30 T-units and the second about 25 T-units. The second instance is bisected by a longer section of "I" use, but the split sections of "you" usage go together because they address the same topic. I analyze the two lengthy uses of "you" and leave out discussion of occasional uses.


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  4. I include "we" in the analysis because, like "I," it actively refers to the first person, as opposed to "you," which distances the speaker from the subject.


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Copyright (c) 2011 Yvonne Stephens



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ISSN: 2159-8371