Individuals with speech disabilities who perform ethnographic research can exhibit certain vulnerabilities. Vulnerabilities are generally tied to participants (Behar, 1996). These vulnerabilities generally focus on some particular attribute (Duffy, 2008). However, Ballamingle and Johnson (2011) argue that researchers can also be vulnerable. Broun and Heshusius (2004) had previously demonstrated how physical vulnerabilities can impact researchers with disabilities. Researcher vulnerabilities, as well as potential strengths, are important because of the role of speech in the ethnographic research practice. This article shall describe issues involved with the actual doing of ethnographic research. This discussion focuses on speech while doing fieldwork. In addition, to the discussion of fieldwork, this article also discusses the presentation of the work, especially with regards to professional conferences.
This paper deals with vulnerability in ethnographic research when the researcher has a speech difference. In particular, the tensions between doing ethnographic work and having a speech difference, including presenting the work, shall be discussed. Although individuals with this label do face challenges to conducting research, we also have important advantages. While this work focuses on ethnographic research, the focus on vulnerability and talk in academia can be applied to a variety of fields across the academy and to various occupations that rely on oral speech to gather information and/or present results. The advantages and tensions of doing research when one has atypical speech will be explored as will new directions in the logistics and practice of qualitative research including its end product.
Ethnography is "the description of culture or aspects of culture" (Bogdan & Biklen, 2007, p. 30). Ethnography relies on "thick description" of aspects of life and meanings that "cultural participants take for granted" and depicts a "new understanding for the reader and for outsiders" (p. 31). The idea of ethnography is to get an insider's view that the ethnographer does not necessarily possess (Wax, 1971).
Vulnerability, The Self, and Research on Others
Ethnography seeks to describe phenomena found in culture to readers and outsiders with a focus on gaining new understandings of a particular culture or things within the culture (Bogdan & Biklen, 2007; Wax, 1971). In order to gain this outside perspective, one has to keep one's own subjectivities (emotional responses) about the situation in check. Subjectivities relate to the emotional work of doing research (Bentz & Shapiro, 1998). By being aware of how emotions and personal agendas can drive research, researchers can gain awareness of how they are being impacted by their subjectivities, and they can decrease how they are unconsciously driven by those feelings and agendas in such a way that they more fully experience the point of view of the participant (Bentz & Shaprio, 1998).
Vulnerability in ethnography is generally tied to participants (e.g. Behar, 1996). Usually, vulnerability is tied to having a potential for harm and related to the participant having some particular attribute which makes the individual more susceptible (Duffy, 2008). The general assumption is that the researcher is in a position of power over participants. However, Ballamingie and Johnson (2011) write that this is not necessarily true. Since participation is vital, but not a given, participants do have some specific power over the researcher. Moreover, this power is enhanced when the researcher has particular attributes. For example, the authors felt like their participants had relatively enhanced power over them than usual because of their then status as relatively young, female Ph.D. candidates relative to older, tenured faculty members. When the individual shares a common attribute, this vulnerability may also include confronting the researcher's own emotional vulnerabilities in relation to what he or she learns about the participants (Broun & Heshusius, 2004).
Some academic researchers, however, try to de-sanitize their work of personal emotion and their own situations despite the fact that speaking to these situations can provide helpful insight into the social context of the study. This is, in some cases, an attempt to sound more high- minded than the study calls for. For these types of researchers, it is important to establish rules to regulate emotions, including the researcher's own emotions and vulnerabilities (Katz, 2004). In other cases, it may be used to add weight to the argument by infusing it with a certain professional tone not unlike more quantitative fields such as medicine (Katz, 2004).
Sari Knapp Biklen (2004) provided an additional argument for greater focus on subjectivities. Writing about researchers of adolescence, Biklen argued for caution when researchers recall memories of one's youth as this can impact how one perceives one's data. Researchers, according to Biklen, need to be aware of how identity markers shape their thinking about their research project. These identity markers can be problematic because the experiences of the researcher clash with those of potential informants because they "regulate what we hear" (p. 720). Not interrogating experience, Biklen argues, is dangerous because researchers often have social power over their informants and, therefore, making assumptions based upon one's own experience can lead the researcher to ask about or to observe things that are not necessarily relevant to the situation at hand.
Behar (1996), citing Deveaux, wrote that the focus on subjectivities in ethnographic research comes from a desire on the part of the academy to instill an objectivist stance in the ethnographic process. Behar believed that too often ethnographers used subjectivity to try to work through their feelings toward the research, only to set those feelings aside for more objectivist pursuits. Behar questioned whether it was appropriate for ethnographers to attempt to try to siphon their feelings out of the process, thus legitimatizing forms of knowledge which may constrict certain sorts of knowledge (e.g. humanistic knowledge or ethics) (Behar, 1996). Behar's viewpoint did not particularly support the concept of ethnographers striving toward a neat, scientific view of "the other." Rather, it cast the person being observed as being too far away from the gaze of the observer. Instead of casting aside subjectivity, Behar argued that ethnographers ought to embrace their vulnerability. Ethnographers cannot fully study humans unless they acknowledge that both the subjects of the study and the researcher are fully human. The researcher must not just acknowledge what he or she might feel, but also be responsive to it.
There seems, therefore, a need to have some balance between being able to talk freely to participants without being hindered by one's own memories, vulnerabilities and limitations and a need to create more contextual work geared toward the ethnographer's emotions and other vulnerabilities. This can be especially important because the ethnographer's work in the field may take him or her into very different situations than what might be experienced by the reader. The contrast between these two worlds can be valuable because it can sometimes explain factors in the study such as research design decisions (Katz, 2004).
Defining Myself as a Researcher
I, myself, am an individual with multiple disabilities including a speech disability. These disabilities sometimes lessen my ability to have the sort of status I would normally be afforded as a white, heterosexual, Protestant Christian, male, from a relatively economically privileged background, who was until recently a student in a high profile Ph.D. program at a university in the Northeast United States. Medically, this speech disability is the result of an unknown syndrome that has caused skeletal deformities including in my jaw and other oral structures. As a result, my rate of intelligibility, that is how much speech an unfamiliar listener can understand, has been between 40 — 80% for most of my life. While I occasionally used alternative and augmentative communication (AAC) during my preschool years, I apparently indicated that I was not interested in using an AAC system. I generally relied on familiar listeners or teachers to mediate my communication. I continued to use this method of communication through my undergraduate years, a semester of law school, and a Master's degree program in English where I was a graduate assistant at the university's writing center. Upon graduating from my Master's program in English, I entered the Ph.D. program in Cultural Foundations of Education and Disability Studies at Syracuse University because of my interest in educational policy issues related to disability. Recently, I left the program with a Master's Degree in Cultural Foundations of Education and a Certificate of Advanced Studies in Disability Studies. At Syracuse, my research focused on accessible technology, especially in the alternative and augmentative communication field. After a couple of years in this program, it became apparent that the communication strategies I had relied on to date were no longer an acceptable arrangement. The amount of oral communication involved in fulfilling the duties of researching, presenting, and teaching were too much. I eventually began using a speech generating device during meetings, while making presentations, and to communicate in classes I was taking or teaching. During my last two years of graduate school, I experimented with a variety of means of mediated communication to teach and present. Many of my personal observations come out of those experiences.
Barriers to Ethnographic Research
Individuals with speech differences may face a few barriers when doing ethnographic research or any other kind of research that involves oral communication and which may contribute to a sense of vulnerability. For instance, it may be difficult to access the site and/or informants because of oral communication barriers. This proves to be a very practical issue in that one must first have participants and/or a site before one can do research. The action in this stage involves having conversations, sometimes fairly in-depth ones, with people who are most likely not familiar listeners. One has not only to convince these individuals of one's competence, but also find a way to communicate effectively. Sometimes, more electronic types of communication, such as e-mail, can be helpful for this purpose, but this can sometimes prove difficult as people vary in how much they engage in electronic communication.
Overcoming shyness can be an issue. Because other people often either ignored my oral communications or did not pay them much mind when I was younger, I became fairly shy in some social situations, particularly in cases where assertiveness is concerned. I have had to learn to be more assertive particularly with regards to soliciting potential participants and/or research sites.
Interviewing, or asking questions during an observation, can also sometimes be laborious. When I do an interview, I either have to type the question out on my alternative and augmentative communication device, stick to the questions in my interview guide, or rely on my own speech with the hope that others can understand me. Typing and trying to communicate using oral speech can be time consuming in the interview, putting the focus on my speech instead of the data that I am after. I also do not like to rely exclusively on an interview guide in the semi-structured interviews as I often have follow-up questions that sometimes need to be addressed. I also have to think about my transcribing needs. Since I am used to hearing typical speech in my interactions with others, even my own ear is trained to listen for this type of speech instead of atypical speech. When I transcribe my data, not being able to fully understand my own words can be a practical issue as I rely upon my questions to contextualize the words of others. Even if my participants understand me, I cannot always understand myself.
Advantages of People with Speech Disabilities in Doing Ethnographic Research
People with speech disabilities do have, however, a variety of resources that can make them effective ethnographic researchers. These advantages allow these individuals to have access to things that researchers without speech disabilities may have less access to or skills that can be enhanced by atypical speech. One can substitute weaknesses as a researcher with strengths and incorporate such strengths into the research design itself. By designing a study that best balances the skills and abilities of the researcher with the needs and preferences of informants, one can potentially design and implement a stronger study than one might otherwise.
One of the better resources that people with speech disabilities have is that they have a physically manifested degree of vulnerability. Because these individuals cannot speak well or at all, there is no particular way to hide one's vulnerability. While in some situations this is not always a good thing, which will be discussed later, for some purposes this can be a strength that the individual brings to the table. This is because ethnographic research is a potentially vulnerable experience for participants so researchers who display a sense of their own vulnerability sometimes have more credibility with informants than those who cannot or will not display any form of vulnerability.
Another positive capacity individuals with speech disabilities sometimes have is the ability to observe. Since society tends to shun those with speech disabilities, these individuals are sometimes able to develop keen observational ability. Much of human behavior is non-verbal. In order to understand this behavior, it is necessary to fully utilize sensory details. Observing human behavior sometimes requires a stillness of being; the researcher must be fully present in the situation (Bentz & Shapiro, 1998, p. 52). Although talk can sometimes shed light on the situation, a great deal of information from other sensory sources can be important in getting a fuller accounting of the situation in question. Individuals who have had the time and the opportunity to develop observational skills, therefore, are better at observing than those without such opportunity. Since non-verbal interaction and other perceptional issues play a large part in shaping and interpreting the world, this is an important skill to have
Speech difference can lead to new and different appreciations of language. For example, non-verbal autistic individuals report experiencing and appreciating language despite their difficulties with speech (e.g. Biklen, et al., 2005). As an individual with speech impairment, I was constantly, from a young age, decoding language and thinking about the words that I used. I might say something a particular way simply because it was the best way to make my meaning understood. When I did this, I had to think about both the needs of the audience and my own needs. I did not know it yet, but I was also thinking about the cultural meaning of words. I had to think about how to express what I was thinking, wanting, etc. in a way that made sense to others, while simultaneously negotiating the difference between typical speech and my own speech. Not only was I basically utilizing a sort of internal thesaurus, I had to think very specifically about the types of audiences that I was addressing (for example, familiar listeners could be addressed differently than non-familiar ones.). From a sociological perspective, I had to think about the social meaning of words and the contexts in which they are used. When I started doing ethnography, I had prior practical experience decoding how language conveys meaning in social contexts, so it was a bit easier for me to make practical use of this concept than it might have otherwise been.
Presentation and Dissemination of Data
Perhaps one of the biggest challenges that a researcher with atypical speech might face is the presentation and dissemination of his or her data specifically when faced with presenting the data orally in a conference, research talk, or invited lecture. Not unlike other sectors that value strong oral presentation skills, the academy also judges the quality of one's oral presentation style.
The question for the speech impaired ethnographer, therefore, is whether to assimilate to the norms of academic discourse or whether to amend one's style of presentation. For individuals who type to communicate, for example, it might be quite laborious to take the conference audience on an extended literature review or to go into a lot of detail concerning research methods. However, the speech impaired ethnographer risks potentially alienating his or her audience by omitting important material or, for some conferences, even risking rejection of the paper outright if the prepared remarks must be submitted to conference reviewers in advance.
The ways words are used can have an effect on how an individual is seen in the academy. Succinct writing and the ability of the individual to do such writing is an important value in the academy, but utilizing words in an impressive fashion is also a competing interest. Howard Becker (1986/2007) urged all ethnographers to be cautious with word usage, arguing that all individuals and academic writing in general can benefit from less emphasis on verbal pomposity. Becker wanted to see individuals try to instill a sense of simplicity in their work to the extent that he preferred plain language and rather loathed the academic urge to sound more educated. Becker argued that language that avoided pretense actually made the point far better than grandiose statements. Still, knowledge workers often rely on 'ex-pressing' data; in other words, these workers attempt to create a separation between their experiencing selves and their writing selves as a requirement to be seen as objective observers (Schulze, 2000). This not only assures academic quality, but also aides in reassuring potential participants, especially those who may otherwise be hostile to the study that the individual really is objective; that is, there is not a particular agenda at work (Schulze, 2000). However, when one has a physically manifested attribute, it is difficult for others just to ignore that particular attribute (Goffman, 1963) or to not deal with it in some manner.
Fortunately, people with speech differences still have several options available to them. The first option that a person might take is to simply have another individual "be" their voice by reading the paper aloud. The individual can then muddle through questions, perhaps with the assistance of others. This has the advantage of allowing a clear delivery of the paper with all the elements commonly found in a conference paper being read as one might usually, except that the writer is not the person who is "presenting" the paper. The major disadvantage of such an approach is that it is not the person who wrote the paper speaking, so some of the ideas that might come from emotion or human connection may not be successfully relayed by the reader.
Another possible option is what is described as partner-dependent communication (Buekelman & Mirenda, 2005). Partner-dependent communication is a negotiation between a person with a speech disability and an individual without a speech disability. This situation is a negotiation between a speaker and a mediator who speaks the other person's words on their behalf. These negotiations can unexpectedly cut into the person's time. Relatedly, the translations can reduce the depth of the paper as this undoubtedly also cuts into time, so the author needs to either write very precisely (perhaps to a fault sometimes) or needs to reduce content in order to make the paper fit into the allotted space. While precise writing might be considered something that ought to be done, one must be very careful not to write overly precisely, lest the audience miss out on key points and issues.
One possible way of communicating independently, with regard to audience members who can see and do not have other access issues, is to increase the font size of one's paper to such a degree that the audience can follow the paper through a word processing document (this assumes that the correct technology, a computer with the appropriate word processing program is present in the event space which is not always the case). This particular strategy allows the individual to voice the paper in a somewhat organic manner. By doing this, the individual can perhaps capture more of the emotional and/or non-verbal parts of the paper. This brings some more attention back to the speaker, which in turn allows the individual to take charge of the presentation.
There are several downsides to this approach. First, when individuals do this, they are tied to what is written in the paper. While it is not always an uncommon practice at academic conferences to simply read aloud from the paper, that convention is often modified to allow for explanation or to cut down on time. While a person with a speech difference can also announce that he or she is going to skip ahead, this does not guarantee that the person is going to be understood. The person is also limited in his or her ability to be understood if he or she wishes to add information. The individual might be able to talk, but it does not necessarily mean that he or she is understood. Clearly, the consequences of impairment come into play here and the wishes of the individual presenter sometimes come at the expense of trying to communicate effectively.
Another problem with this method is simply with the whole practice of reading the entire paper. As has been mentioned earlier, it is not atypical at academic conferences for presenters to simply read their papers, but just because the practice is typical does not mean that it is necessarily a good practice. If it is commonly done, how is reading a paper in its entirety, or most of a paper, a negative practice? The answer deals with how audiences engage with the information presented to them. While individuals may have various reasons for attending a particular session, most individuals are probably going because they have a genuine interest in the session and want to hear/learn about the topics being presented. Individuals who present are effectively not just communicating a position, but are often educating as well.
Thus, the presenter ought to try to make the presentation engaging and informative, which is rarely done well by reading the entire paper (Reynolds, 2012). In order to be most effective, the presenter needs to assume the responsibility of conveying the point or points conveyed in the presentation to the entire audience. This means engaging a number of different kinds of learning styles which sometimes means reading a paper is inappropriate. In order to more universally design a conference presentation, an individual needs to do such things as involve a degree of illustration, provide much more bodily movement (either for him or herself or others) and generally engage in the presentation much more than passively going through the document. While an individual with atypical speech may find utilizing a computer and a word processing document to be a helpful accommodation for him or herself, one should keep the broader audience in mind.
Accommodating learning needs goes far beyond just how people learn. Some individuals have physical or cognitive issues which would make utilizing a visual and literacy based system difficult, if not impossible. Individuals who are blind or have a low degree of sight, for example, would not be able to share in the experience as PowerPoint introduces a visual privilege into the presentation. Individuals with dyslexia or cognitive disabilities also may have trouble reading the document as quickly as it is being presented. Dyslexics, for instance, might grasp the basic point of the presentation, but it does not provide these individuals with full access to what is being presented since many read contextually, not word by word. If a presenter wants, or is required, to provide full access to the presentation, the burden is on the individual presenter, not engaging the audience members. While this kind of presentation may help fit the needs of the presenter, it may not fully meet the access needs of the audience.
I have tried to utilize PowerPoint technology in my presentations. By making some of the information that I am presenting verbal, I attempt to utilize a more colorful and less traditional PowerPoint presentation in order to achieve communication with the audience. PowerPoint, of course, can contextualize the most important points for audience members. If an individual differs greatly from standard speech, however, the audience will only get the bullet points of the argument, not the whole thing. Another disadvantage to utilizing PowerPoint for a conference presentation is that it is not always a very intriguing tool for engaging the audience. A good PowerPoint will provide a visual medium for the audience and may engage those individuals, but essentially they can become a distracting force (Tufte, 2006), particularly at an event where almost everyone is doing a PowerPoint.
An individual can also paste the content of the paper into a PowerPoint presentation. I drew my inspiration for creating this method of presenting from Computer Assisted Realtime Transcription (CART), a transcript of what is being said in a particular situation, something most commonly used to provide communication access to the D/deaf and hard of hearing. In this case, PowerPoint essentially becomes a mechanism of CART. In terms of the textual element of utilizing a word processing document, this method works in a similar fashion. This would include some of the same advantages and disadvantages mentioned above.
Utilizing PowerPoint has other distinct advantages and disadvantages. One advantage to using a PowerPoint presentation in the manner in which I have described is that one can enliven the presentation with visual elements. Even if the visual content is just some clip art here and there, it still provides a visual representation of what is happening in the presentation. This provides a way for visual learners or individuals who might otherwise benefit from visual representation to have more meaningful interaction with the text.
In addition, PowerPoint presentations are not uncommon at academic conferences or other kinds of meetings so this provides more of a normalizing situation for both presenters and audience members. Because PowerPoint is commonly used at academic conferences, business meetings, trainings, and so forth it is something that conference centers, hotel meeting rooms, etc. are more likely to have than a word processing program. This makes the individual seem more like part of the academy, albeit utilizing PowerPoint in perhaps a less traditional manner than one might usually present.
However, there are also unique disadvantages of presenting this way as well. The heavy text centered approach, as previously mentioned, is an accessibility measure that may, in some circumstances, be counter-intuitive to the sorts of accessibility and learning style advantages mentioned above. In addition to having the same sorts of disadvantages as utilizing a text-centered approach would have, PowerPoint, because of its commonplace occurrence in classrooms and conferences may turn people, who do not appreciate the prevalence of this trend, or who just find PowerPoint non-engaging, off the presentation. While one may take a risk whether one does a more traditional presentation or use the presentation to convey the paper in its entirety, the latter may be more alienating than more traditional methods of PowerPoint as one has made the whole presentation about the PowerPoint and its visual / text-centered content.
Finally, I would be remiss to mention presenting with atypical speech without mentioning speech generating devices. These can sometimes be effective in communicating and for individuals who are comfortable with this are sometimes the best way to communicate as they "speak" fairly clearly (as long as volume is accounted for) and provide a measure of independence. One drawback is that most limit how much an individual can actually communicate so one has to write more tightly than one might otherwise.
Another issue involved in the usage of speech generating devices for presentational purposes is the idea of injecting energy in one's voice (Reynolds, 2012). Reynolds recommends that presenters put energy in their voice which includes projecting enthusiasm, mostly to convey the "peaks and valleys" of one's unique intonation which will, in theory, engage the audience more (Reynolds, 2012). However, many speech generating devices are not equipped to do this particularly well. This is because the voice program is preprogramed, so will deliver what an individual types in a fairly monotonic way. This can be problematic because, as Reynolds notes, people respond to intonation.
As noted concerning some of these presentation methods, there can be tension between accommodating the audience and the presenter. For example, Reynolds (2012) recommends removing the barrier of using a lectern. Reynolds asserts that there are three levels of barriers between the audience and the presenter: the lectern itself, the computer screen, and the notes that the presenter is holding, implying that a presenter will be looking down at his or her notes instead of at the audience and will furthermore use less conversational language than he or she might otherwise. If an individual uses a speech generating alternative and augmentative communication device, however, what Reynolds constitutes as a barrier may, in fact, be more affirmative and life giving to the presentation than would be suggested here. Reynolds does admit that there may be some situations, such as graduation ceremonies, where lecterns are appropriate, but he implies that, in general that the audience is there to see a particular speaker and that any barriers, including lecterns, can be barriers to effective communication (Reynolds, 2012). For some individuals, including individuals who may use speech generating devices, however, a more scripted presentation may actually be more appropriate toward removing barriers between presenter and audience. Because presentations can be pre-programed on many devices, the individual would be able to give the presentation independently in their own voice without having to take the time to type out what they want to say during the presentation itself. While this method is perhaps not as organic as some would like, for other presenters, it may be affirming and life giving.
How can the presenter convince and inspire the audience if the audience cannot access what they are saying? For some individuals, a speech generating device, or another tactile method of alternative and augmentative communication, may be their best option to communicate effectively, especially when addressing an unfamiliar audience. Unless the alternative device is mounted, as is the case for some individuals who use alternative and augmentative devices as a communication aid and wheelchairs for mobility, an individual probably is going to need a flat surface on which to place the device. For these individuals, this probably will mean that they are, unfortunately, pretty much stuck in the same place for the entire presentation.
Certainly, there are elements of Reynolds's liberation from the lectern approach that could possibly work, but there are still possible arguments against them. For example, just because an individual may have a physical need to stay in one place does not necessarily mean that they necessarily need to do a more traditional presentation. There are, however, points of Reynolds's criticism that, although not necessary to do, are still useful in the traditional sense. For example, Reynolds writes that it is generally best not to be consulting notes (Reynolds, 2012). This might be true, but for an individual with atypical speech who types to communicate, notes can be a helpful resource. It is not that the individual absolutely has to use notes or a pre-written copy, but for an individual who must type in order to effectively communicate, notes, or an actual paper, can be a helpful resource because it takes long enough to type out what one is going to say without having to consult one's notes. This saves time which, in turn, allows for not only more information to be presented, but also engages the audience more because there is less "dead time" between utterances.
Similarly, Reynolds cautions against "reading a speech." Quoting consultant Guy Kawasaki on reading eight to ten point type slides, Reynolds cautions against reading slides. Most audience members can simply read the slides (Kawasaki, as quoted by Reynolds, 2012, p. 244). Reynolds goes on to expound that one's ability to "connect with, persuade, or teach the audience anything will approach zero" and that "Reading slides is no way to show presence, make a connection, or even transfer information in a memorable way. In many cases, reading a deck of slides is indeed a good way to put the room to sleep" (p. 244). Reynolds has a good point, but again he has not considered that for some people PowerPoint slides actually can be a useful tool as the audience is able to fully get the verbal part of the presentation. Is this ideal? No, it is not. Might the presentation end up doing exactly what Reynolds claims it might do? Yes, it might do that as well, but it might also allow a verbal person with atypical speech to give a presentation without having to rely on help from non-normative technology or others.
When one has non-normative speech and is in a situation where one has to give a presentation, there is almost always going to be a tension between being understood and meeting the needs of the audience. This probably means different things to different people, depending on a variety of factors, not the least of which is their own comfort levels with different sorts of communication strategies and how they usually communicate. I agree with Reynolds that it is important to engage the audience, but since Reynolds does not consider disability at all, he makes significant assumptions about what good practices in presentation are without considering physical differences. I certainly would not single Reynolds out because audience reactions, in my experience, are sometimes exactly what Reynolds says they are, which means that, despite common practice, there are still socially constructed ideas about what is interesting and what is not and, for some individuals, it is very difficult to meet these goals. True, plenty of people who do not have disabilities read their papers as well, but that does not mean that the audience necessarily finds their style of presenting any more intriguing than other sorts of presentations. It is just that these individuals have the privilege not to choose to present this way.
Presenters need to establish a presence. Indeed, one needs to be "in the moment" (Reynolds, 2012, p. 225). Reynolds puts the emphasis on contribution especially in "making a contribution" when one presents. The emphasis, Reynolds argues, should be on teaching. This means thinking about the audience and what is most important to them (p. 226). Individuals with speech disabilities, if they wish to be a part of a professional order, have to utilize presence as well. That does not necessarily mean that these individuals have to do things exactly as it is demanded for them, but it is important to do work which is recognizable as belonging in a professional sphere. Individuals, despite their communication issues, can create presence in two ways. First, individuals can use their physicality as positional of their authority in talking about what they intend to talk about. Even if the individual is not gesturing a lot or physically using a space, an individual can use the body that they inhabit to draw the attention of the audience to their words. This does not mean that the individual has to be talking about a disability related topic. Quite to the contrary, almost anything could theoretically work so long as the individual creates a presence about him or herself to draw attention to what he or she is saying. Having atypical speech can be a great gift to have because individuals, if they want to learn, have to pay close attention to what the individual is saying. Part of this, though involves the audience. How best can one engage the audience? It is not enough to simply ask "What is best for the audience?" The questions that have to be asked are "What is best for the consumer of my research product?" and "How can I best fulfill that need in a way that serves my interest and, in a way, that honors the commitment shown by my participants?"
The doing of ethnographic research and other kinds of research can provide opportunity and barriers for individuals who have atypical speech. While a heavy emphasis on verbosity usually marginalizes these individuals from doing research or relegates them to the realm of the auto-ethnographic, there are also opportunities for this population to engage in research projects that seek out the experiences of others without overly focusing on their own experiences.
The larger question here becomes one of the professionalization of individuals with speech disabilities. How might these individuals be better able to function in professions that require a particular amount of verbosity? In particular, to what extent can these individuals speak for others without engaging their own impairments? I believe a good start is to examine how the academy's practices privilege the speech typical and also critically examine the various practices already in use.
The main thing that needs to be done is to change some of the practices of academia. For example, it would be helpful if the academy made it more acceptable for individuals to present information on their own terms. This would involve not just universally designing conferences, but really engaging with the concept of presentation, removing stigmas on presenting in a particular fashion. It would involve questioning academic norms that are currently accepted as being "just the way it is," instead revolutionizing what it means to be an academic or other professional (as these individuals have similar issues, not to mention they get their start in the academy).
Scholars with speech disabilities also must be encouraged to engage the voice of others. First, this obviously involves professionalizing more individuals with disabilities, which means that these individuals need to be supported to pursue their dreams, not blocked by barriers that force them into jobs they might not really want or into government assistance programs. It also involves individuals, not just outside the academy, but within it seeing people with speech differences as being something more than just a person with a disability, but instead as someone with value beyond the disability.
It also involves individuals with atypical speech seeing themselves who can innovate and achieve outside their personal identities. While there are a great deal of societal burdens put on individuals with disabilities (Goffman, 1963), this does not mean that these individuals can just expect society to take care of their needs or "play the victim." Instead, these individuals have to be on the forefront of innovation and self-advocacy. If there is to be any real change in academic and professional circles individuals with disabilities and their allies will have to be on the forefront of this change. This means that these individuals have to show through their competence and presence that they deserve to be there.
Societal norms do, sometimes, have to change in order to better accommodate groups of people. It is also important to consider the self and how one interacts with others. In order to create change in this area, individuals with speech disabilities will have to take the lead, whether it is fair or not, but the academy needs to be more accepting and affirming as well.
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Andrew Bennett recently graduated from Syracuse University, where he had been pursuing a Ph.D., with a Master's of Science degree in Cultural Foundations of Education and a Certificate of Advanced Study in Disability Studies. The focus of his research was Alternative and Augmentative Communication, especially with regards to the social impact AAC has on high school curriculums and the lived experiences of teenagers with speech disabilities and other disabilities that impair speech.