Issues

Image of brown rods on a white background.
7

Disability as Insight into Social Justice Pedagogy in Technical Communication

Jared S. Colton, Utah State University
Rebecca Walton, Utah State University

Abstract

Incorporating social justice concerns into the communication design classroom can be difficult. Based upon a pedagogical study, this article proposes that considerations of disability can provide insight into the relevance of social justice to technical communication practice. Engaging with notions of disability enables students to recognize the existence of privilege. This recognition better enables students to talk about what they might consider less comfortable facets of privilege (race, gender, class)—facets many of them have been taught to reject outright or view as an agenda in contradiction to their own personal value systems. Disability is not readily associated with any particular political position and thus can pave the way for consideration of other social justice topics.

 

Introduction

As the theme of social justice gains more traction in technical communication scholarship, instructors are trying to invent ways to incorporate ideas of social justice into their classrooms. Still, the relevance of social justice to technical communication is not readily apparent to everyone, perhaps least of all to students. To address this problem, this article proposes one strategy in which considerations of disability can provide insight into broader notions of social justice in the communication design classroom. The context for the research we present is a shift in the curriculum at our university to more centrally incorporate issues of social justice. To inform this curricular revision, we designed a pedagogical study (IRB approval #6070) to help better understand how to bring social justice pedagogy into the technical communication classroom. The broader overall study investigated three undergraduate course designs being piloted in the 2014-2015 academic year and involved multiple methods to collect data at various times throughout and immediately after the fall and spring semesters. This article homes in on one of those three courses (a course on rhetoric, digital media, and disability studies) to investigate the promise of disability studies for initiating students to the relevance of social justice to technical communication. Our findings demonstrate that facilitating students’ awareness of disability can serve as an entry point for helping students recognize the relevance of social justice to the work of communication design.

Technical Communication and Social Justice

Although the term “social justice” is only recently gaining prominence in technical communication scholarship (see Agboka 2013; Haas 2012; Leydens 2012; Walton and Jones 2013), the field has long been concerned with inclusivity and unjust power disparities, producing a sizable body of relevant scholarship. Social justice research in technical communication has been defined as “investigat[ing] how communication broadly defined can amplify the agency of oppressed people—those who are materially, socially, politically, and/or economically under-resourced” (Jones and Walton forthcoming). This research aligns with early technical communication scholarship positioning the field as humanistic (Miller 1979) and with scholarship from a critical-cultural turn, which began explicitly acknowledging concerns of power, hegemony, voice, culture, and diversity as relevant to the field (see Scott and Longo’s 2006 special issue of Technical Communication Quarterly and Herndl’s 2004 special issue of Journal of Business and Technical Communication). Extending this earlier work, social justice research moves beyond description and analysis to take action against oppression.

“Social action” is the term used by Rude (2009) to identify one of four major categories of technical communication research. This research takes a variety of forms: for example, service learning, in which students apply their developing expertise to support community and nonprofit organizations (e.g., Scott 2008; Youngblood and Mackiewicz 2013); community-based research, in which scholars partner with nonacademic communities to pursue issues of mutual interest for social good (e.g., Faber 2002; Walton, Zraly, and Mugengana 2015); action/activist research, which requires that nonacademic communities benefit from the knowledge produced and actions facilitated by research (e.g., Clark 2004; Grabill 2000); and civic engagement, which aims to improve public understanding of issues relevant to people’s lives (e.g., Bowdon 2004; Moore 2013). These forms are not always distinct but often overlap: service learning and civic engagement (e.g., Scott 2004), civic engagement and action research (e.g., Blythe, Grabill, and Riley 2008), action research and service learning (e.g., Crabtree and Sapp 2005).

Under the broader umbrella of social justice research, we characterize our project as service learning and action research. We provided students opportunities to practice their new skills to produce knowledge and facilitate action that benefits communities—specifically, people with disabilities in the Cache Valley area of Northern Utah. It was our aim that in so doing, students develop an ethical framework in the sense of a neo-Aristotelian virtue. While ethics is conceptualized and practiced in a variety of ways (e.g., duty, rights, care, utility), Aristotle considered ethics a systematic study of the character of good action. For Aristotle, ethics was not a scientific problem or a heuristic readily applied to any situation but rather a pursuit that was a reward unto itself. In other words, doing “the right thing” because it is “the right thing,” not because an action yields more favorable results or is simply an assigned responsibility. One of the key terms in Aristotle’s Nicomachean Ethics (2011) is “virtue,” which characterizes a person’s being rather than a particular act. In this framework one would not view a person as virtuous based upon one inclusive act or a statement such as “I believe in equality”; rather, a virtuous person’s ethical practices would appear to others as part of his or her character—not as instinct but as an element of a carefully cultivated disposition. This sense of ethics—as day-to-day practice, as beliefs enacted, repeated and continually improved upon—is where we see technical communication and social justice converge.

We admit that looking to Aristotle for a contemporary concern and concept of social justice may seem strange or antiquated to some, as Aristotle likely would not have recognized people with disabilities as citizens, and Aristotle’s moral virtues are those of citizens enlisted in political activity. Also, Aristotle’s virtue ethics are often thought of as individual virtues. How then, does drawing upon such a notion of ethics benefit technical communicators looking to engage in social justice? To the first point, contemporary virtue ethicists such as Garver (2006), MacIntyre (2007), and Vallor (2010) each have demonstrated that such repellent embarrassments (of racism, sexism, and able-ism) found in Aristotle’s writings are unethical to a contemporary neo-Aristotelian virtue ethics framework and that some of Aristotle’s absurd comments on ethical and unethical action (such as the notion that it is more virtuous for a city to open its gates to an enemy so that the battle is fair) are not constitutive of the theory of virtue itself. This theory of virtue in its simplest form is the idea that being good and doing good are intertwined. In other words, for Aristotle, virtues “that promote the agent’s self-realization” and “those that promote the good of others” are not separate (Garver 2006 p.5).

Ironically, the second concern, that virtue ethics are individualistic (which, of course, is not the same as individualism), is actually why virtue ethics are so helpful to technical communicators. Unlike contemporary theories of justice found in liberalism (Rawls 1971) and libertarianism (Nozick 2013), in which it is not the individual citizens who are able to enact social justice but only the state and its institutions (a position many students reinforced when first discussing social justice), a neo-Aristotelian virtue ethics sees justice as a learned disposition of one who does what is just situationally with respect to community values and who distributes good equitably in those contexts (trans. 2011 V.9). Rather than a framework that views enactments of social justice as occurring only when institutional mechanisms are adjusted by those in power—in which the most an individual can do is lobby for an injustice to be rectified—a virtue ethics framework considers justice a mode of being that is manifest through continual practice. This shift enables technical communication students to imagine practicing social justice even if they do not work for a non-profit organization or some other entity specifically organized around concerns of social justice.

Course Design

Listed as a topics course for technical communication majors, the focus was on rhetoric, digital media, and disability studies. In framing the course, Colton asked the students on the first day of class, in the spirit of Roman rhetorician Quintilian, “Is a good document designer also an ethical and just document designer?” The course learning objectives centered on enabling students to see all design practices as having an ethical component, an insight that would allow them to see their work as having effect on social justice. This latter concern was a significant challenge, as most if not all of the students had considered technical communication and social justice to be unrelated.

Required texts included Meloncon’s collection Rhetorical Accessability (2013a), Williams’s The Non-Designers Presentation Book (2010), and Davis’s The Disability Studies Reader (2013a). Rhetorical Accessability was key to bridging the gap between a basic presentation design book (Williams 2010), the kind of text to which the students were accustomed, and a critical theory book on disability studies (Davis 2013a). One of the major arguments the authors in Meloncon’s (2013a) collection make is that considering the needs of users with disabilities also makes one a better and more desirable technical communicator in general: i.e., accessible practice is effective practice, whether in terms of document design or pedagogy. As a case in point, Pass (2013) argues, “Effective accessible design doesn’t just help those with permanent disabilities—it helps everyone” (p. 118). Oswal and Hewett (2013) similarly state “the recommended alternatives and practices [toward accessibility] will help instructors improve their courses for all other students as well” (p. 151).

Through reading, discussing, and producing content in response to the chapters in Rhetorical Accessability (Meloncon 2013a), the students learned to consider various disabilities of potential users and strategies of writing for and with these users. For example, after reading Gutsell and Hulgin (2013), the students began changing their language practices—whether using people-first language or the type of language a particular community prefers (e.g., the “deaf community”), rather than relying solely upon medical sources, popular media, or the models of language with which they were familiar. Many students had never considered designing for people with autism and found Elmore’s (2013) discussion of the social construction of independence and dependence as challenging to their worldview, a worldview dominated by neo-liberal individualism. This chapter was a first step for many to begin seeing how all humans are interdependent and that labeling others as “disabled” is a product of our social institutions’ privileging of particular kinds of interdependence (namely white, male, abled, etc.). This notion of interdependence was especially powerful, and many students reiterated throughout the semester how recognizing different types of interdependence (including their own) gave them an ethical incentive to consider people with disabilities in their designs and communications.

Arduser’s (2013) chapter on the language of diabetic communities helped students recognize that the language one uses can empower, disempower, include, or exclude users, and that how one defines disability (Pass 2013) makes a great difference to the social institutions creating accommodation law and policy. Some students noted that under the right socially constructed circumstances and the right definition, they could be categorized as having disabilities themselves. Broadly considered, Rhetorical Accessability made more accessible some of the more theoretically and ideologically challenging material in Davis’s collection (2013a), which introduced the students to arguments and information such as problems of normalcy (Davis 2013b), the history of disability law (Emens 2013), institutional inequality (Baynton 2013), and invisible disabilities (Samuels 2013).

For the major assignment in the course, a service-learning project, Colton developed a relationship with the local Center for Persons with Disabilities (CPD). The students would video and caption CPD guest lectures (given by persons with a disability or loved ones affected by disability), then edit the videos by adding various b-roll footage, images, documents, and presentation slides in a manner that would fit the screencasting genre and would be suitable for online learning. To prepare the students for the final project and allow them to practice their video production and captioning skills in the context of the readings, the course was organized around two additional major assignments: reading reflections and an intervention assignment. The reading reflection assignment prompted students to summarize the disability studies and technical communication readings for the past two weeks (usually four articles) and respond to them, similar to a typical summary/response essay. Reading reflections early in the semester were in the form of a written essay; reading reflections later in the semester were in the form of a screencast. This format enabled students to practice their presentation design skills (such as Williams’s (2010) principles of clarity, relevance, animation, and plot), as well as practice their skills in captioning for significant sounds (Zdenek 2011) through the production of three-minute videos.

Inspired by and modeled after Zdenek’s own pedagogical practices,[1] the intervention assignment gave the students a chance to look for something in their own life that was inaccessible in some manner to a person with disabilities. For this assignment, some students continued to work on their captioning skills by uploading captions (via free online software such as Amara) to a YouTube video of their choice that had no captions or poor captions as a result of YouTube’s automatic-captioning algorithm. Other students chose to follow the Web Content Accessibility Guidelines 2.0 to edit the code and content of a website toward better worldwide accessibility (Lewthwaite and Swan 2013). These website interventions included writing alternate text for images and, where possible, revising the content on the site by creating linear reading paths, informative (rather than “cute”) titles and headings, and writing in plain language (Jarrett, Redish, and Summers 2013). Through these assignments, students engaged with concepts of rhetoric, digital media, and disability studies. This engagement proved productive in at least two ways: introducing concerns of social justice into the practice of technical communication and prompting reflection on social justice issues—even beyond concerns specific to disability studies.

Methods

The findings reported in this article address two of the broader study’s research questions:

  1. What are students’ perspectives on the relevance of social justice to their professional field? to their own professional goals?
  2. What factors were useful for fostering in students a critical reflection on social justice?

One type of data informing this article is anonymized student assignments: four reading reflections and an intervention assignment. This data addresses research question one by conveying student perspectives at multiple points throughout the semester and research question two by indicating whether and to what extent assignments prompted students to engage in critical reflection on social justice-related concepts. One limitation of this type of data stems from the rhetorical context of assignments: some students may say what they think a professor wants to hear in an effort to get a good grade. Another limitation is that this data alone is unlikely to uncover factors beyond readings and assignments that are useful for fostering critical reflection on social justice.

We engaged in several strategies to mitigate these limitations. First, Colton took care to create a supportive discussion environment (online and in person) in which students could share a range of perspectives. He intentionally asked open-ended questions, gave time and validation to different viewpoints, and asked students to do their best to avoid discriminatory language but also not police each other as they were learning new discourse practices regarding disability. A second strategy for mitigating limitations was to provide students with assignment descriptions and grading rubrics that explicitly focused on critical engagement (i.e., not on arguing a particular point or advocating for an instructor-selected position), and grading comments reinforced that focus on critical engagement, not on parroting a particular view. Third, we engaged in three types of triangulation to improve the rigor of the study and validity of the findings (Denzin 1978; Patton 1999):

  • Sources: We analyzed several sets of data collected by the same method—for example, reading reflections produced by students at different points throughout the semester.
  • Methods: Participants produced data through different methods—e.g., semi-structured interviews, written essays, and multimedia documents.
  • Analyst: We engaged in iterative, joint data analysis to develop the coding scheme.

Students were informed of the study at the beginning of the semester, given opportunities to ask questions, and provided with an information sheet that detailed how they could opt out of the study (as well as other information, such as purpose, benefits, and risks of the study). Students could opt out at two levels: 1) removing only their individual assignments from the study and 2) removing any collaborative assignments to which they contributed. To minimize coercion, the opt-out procedure enabled students to withdraw at any time[2] without their instructor knowing until after grades were submitted. A university employee who was unaffiliated with the study agreed to collect any forms (which were attached to the information sheets provided to every student) and hold them until after grades were submitted, at which point the assignments of participating students could be anonymized for analysis.

Students were also invited to participate in a semi-structured interview after classes had finished meeting for the semester. To minimize coercion, Walton conducted all recruiting, scheduling, and interviewing without Colton’s involvement or knowledge of which students participated until after grades were submitted. This method provided a different rhetorical environment for data collection, in which participants could enact a greater degree of freedom in expressing their views (Moeller, Walton, and Price 2015). Interviews ranged from 30-45 minutes and addressed the following topics: a) students’ experiences and perceptions of the course, b) effects of the course on their perspective of social justice, c) effects of the course on their professional goals, d) effects of the course on their feelings of preparedness for entering their profession, and e) their own perceptions of their learning outcomes. No students opted out of the research study, and nine of the 20 students participated in an interview.

Findings were identified through iterative formal coding of interview transcripts and student assignments to identify patterns of meaning (Braun and Clark 2006; Miles and Huberman 1994 p. 55–69). In the first round of coding, Colton and Walton independently coded the same subset of data, noting all direct and indirect references to social justice, such as describing challenges faced by marginalized people and advocating accessible communication design. We created memos to note potential patterns and relationships among these patterns. Based on patterns we both saw emerging in the data, we iteratively developed and applied a joint coding scheme from which three themes emerged:

  1. Reasons to engage in inclusive, accessible communication design: being a more proficient and valuable technical communicator; doing what is ethical.
  2. Ability to engage in inclusive, accessible communication design by recognizing exclusionary practices and identifying ways to make communication more inclusive to people with disabilities, in terms of both usability and representation.
  3. Awareness of connections between social justice and technical communication beyond issues specific to disabilities.

These themes emerged across multiple data types, across the semester, and across students. Table 1 below shows the distribution and general prominence of these themes. Each letter (A, B, C) indicates at least one application of a particular code according to data type and student.This table shows the distribution and prominence of themes. Each row represents a student; 20 students total. Each column represents a source of data; there are six data sources. The columns in order from left to right are reflection 1, reflection 2, intervention assignment, reflection 3, reflection 4, and interview. Columns are ordered chronologically from left to right. Reflection 1 occurred at the beginning of the semester; interviews took place after classes were over. Table cells represent a particular data source (represented in columns) for a particular student (represented in rows). Where a student’s data source contained at least one application of code for theme A, B, and/or C, that cell contains an A, B, and/or C. Theme A is reasons to engage in inclusive, accessible communication design. Theme B is ability to engage in inclusive, accessible communication design. And theme C is awareness of connections between social justice and technical communication. These themes appeared across students and across data types, with theme C appearing much more frequently in data sources produced near the end of the semester and after the semester. The prevalence of themes was pretty comparable across students, except for students 6 and 20, whose data contained no relevant codes until the end of the semester: reflection 4 and interview for student 6; reflections 3 and 4 for student 20.

Findings

Our findings suggest that facilitating students’ awareness of disability can serve as a productive entry point for helping students recognize the relevance of social justice to the work of communication design. The findings suggest how students can begin to revise their practices to reflect this change in perspective regarding the role of the field and their place within it.

Reasons to Engage in Inclusive, Accessible Communication Design

The first theme conveys patterns of students’ reasons to engage in inclusive, accessible communication design. The most immediate insight was that making design more accessible simply made them better technical communicators. This insight broadened their perceptions of the role of the technical communicator—e.g., whether as a web designer, a manual writer, or an editor—to include a consideration of all potential users, especially people with disabilities:

“As technical communicators, it is our job to write and communicate about these technologies. [. . .] However, because users’ technological embodiments aren’t all the same, documentation will not be all the same. It will require that we are adaptable to different users’ needs.” [Source: Reflection 1 in response to Meloncon (2013b)]

“It is our job as technical communicators to provide autism-friendly applications and programs through design principles, usability tests, and audience analyses.” [Source: Reflection 1 in response to Elmore (2013)]

In addition, students indicated that considering accessibility would make them a greater asset to employers or would provide them with cultural capital by setting themselves apart from others in the field of technical communication:

“As we create these user-centric documents, we will be aware of what we need to do to make them accessible in order to reach a more broad audience. By being able to reach a more variety of audience, we will become more valuable technical communicators.” [Source: Reflection 1 in response to Elmore (2013)]

“A more sound knowledge of people and disabilities would be very beneficial to me as a technical writer.” [Source: Reflection 1 in response to Elmore (2013); Jarrett, Redish, and Summers (2013); and Meloncon (2013b)]

Finally, beyond a consideration of accessibility making them better technical communicators, some students articulated a concern for ethics and social justice. Moving from a constitutive “this is what a technical communicator does” to a normative “this is what a technical communicator should do,” the students began to posit accessibility as more than just a job of the technical communicator; instead, communicating accessibly is also a means to express and enact an ethical value:

“It is important to be ethical in the workplace by not empowering stereotypes or social bias.” [Source: Reflection 3 in response to Davis (2013b)]

“People all have different problems, but some are just more visible than others. As we help make content accessible for everyone, we will understand our fellow human beings that much better.” [Source: Reflection 3 in response to Linton (1998)]

“It is not ethical to design for the abled while ignoring the disabled.” [Source: Reflection 1 in response to Meloncon (2013b)]

“The more technical communicators that are aware of these kinds of issues the more the industry in general will change. So, it’s the kind of thing that can snowball, and have a greater effect than even just on that particular classroom.” [Source: Interview]

The above quotes indicate that many students began identifying a concern for people with disabilities and for composing with accessibility as more than just an expanded role of the technical communicator. Students articulated ethical commitments exceeding their job descriptions, including the following: discrimination of people with disabilities is wrong; normalcy is dangerous; an appreciation of difference is important; technical communicators can create societal change; and the students themselves, alongside and by paying attention to people with disabilities, can be the instigators of this change.

Ability to Engage in Inclusive, Accessible Communication Design

The second theme involves students’ ability to recognize and engage in inclusive communication design: inclusive in the sense of being usable for people with disabilities and inclusive in the sense of being respectfully representative of people with disabilities. Regarding usability, students identified several examples of problematic design:

“Going from a simple search engine page to this sudden and immediate page full of visual images, links, and sounds can be overwhelming, even stressful.” [Source: Reflection 1 in response to Jarrett, Redish, and Summers (2013)]

“A few of the slides were completely covered in text, and because there was a lot of text, the text was small. This made the presentation difficult to read and hard to digest the information that was most vital.” [Source: Reflection 1, sharing a personal anecdote in response to Jarrett, Redish, and Summers (2013)]

“For low-literacy users, even locating the option for TTS [Kindle’s text-to-speech feature] could be an issue. There are several links at the top of the reading interface, and TTS is located under the settings link.” [Source: Reflection 1 in response to Jarrett, Redish, and Summers (2013)]

“Not captioning videos excludes people who cannot hear, have difficulty hearing, have difficulty processing aural input, and people who simply have a hard time understanding the speaker’s accent from enjoying the benefits of public videos.” [Source: Intervention assignment]

As demonstrated in the above quotes, students identified a range of examples of document type (e.g., online search site, slide presentation, ebook, online video) and of people being marginalized (e.g., people with cognitive differences, with sensory differences, and with low literacy in a particular language). Students recommended specific changes to improve inclusivity, such as fewer, more meaningful links and multiple representations of the same content, such as image, text, audio track, and closed captioning. Noting that no single design could ideally accommodate everyone, several students suggested recruiting people representing wide ranges and types of abilities to engage in user testing, and one student recommended creating multiple versions of the same document, each with full and equal content to avoid further marginalizing people.

Communication design was also described as exclusionary for problematic representations of marginalized groups. For example, after reading the following sentence on a local business’s homepage, “Almost anyone can bowl, even if you have a disability,” a student referenced Gutsell and Hulgin (2013), saying:

“By placing this on their website, the bowling alley has incorporated exclusionary language when their goal is to convey that they are inclusionary—their language is doing exactly the opposite of what they would like it to do by embracing the supercrip metaphor as an advertising tool.” [Source: Reflection 2 in response to Gutsell & Hulgin (2013)]

The most commonly described examples of problematic representations involved people with disabilities being used as a means to an end, such as advertising, fundraising, or winning political office. Students described these representations as exclusionary, noting that they dehumanize and misrepresent people with disabilities and their interests.

Though positive, we do not see the students’ design recommendations themselves as the primary contribution to social justice pedagogy but rather the change in student perspectives and awareness that these recommendations represent. In identifying examples of what makes communication design marginalizing versus empowering, students demonstrated the ability to take action, to engage in the inclusive practices that they had described as important to being proficient technical communicators and ethical people.

Several students described their subsequent efforts to make documentation more inclusive in the organizations where they work or volunteer, including a food pantry, a domestic abuse shelter, a local museum, and the college of natural resources. Other students emphasized the importance of pairing awareness and action:

“I felt like I had to just think on a personal level, like, how can I improve it? […] For example, saying, ‘We need to provide captions for videos,’ but then also having a tutorial video of how to provide captions. It’s all fine and great that people are aware of the situation, but if they don’t know how to resolve it, then it doesn’t really go anywhere. So there’s actually no social justice; it’s just an idea.” [Source: Interview]

Awareness of Connections between Social Justice and Technical Communication

The third theme provides evidence of students making connections to broader notions of social justice beyond disability. We see here a critical awareness of experiences of people who occupy positions of lesser privilege because of their gender, race, ethnicity, or sexuality, as well as ability. For example, in reflecting upon their readings, students engaged with notions of normalization and power, historical justifications for discrimination, and positionality as socially and culturally constructed. Students then began noting the relevance of these concepts to multiple marginalized groups:

“Linton [1998] states that disability was constructed to serve certain ends, specifically a compromised social position. Taking that further, ethnicity, gender, and sexual orientation are also socially constructed.” [Source: Reflection 4 in response to Linton (1998)]

“Baynton [2013] addresses the notion that labels, such as those for disabilities, are powerful weapons for inequality and are used to justify treating people differently.” [Source: Reflection 4 in response to Baynton (2013)]

“There are similarities between people with disabilities and an LGBT individual. It’s a personal decision to come out, whether as gay or having depression.” [Source: Reflection 4 in response to Samuels (2013)]

“Disability rights is very much like a civil rights issue.” [Source: Reflection 4 in response to Baynton (2013)]

“This idea of normalcy strives to make humans appear as closely related to one another as inhumanly possible: in behavior, dress and appearance, health, and intelligence, among many other aspects.” [Source: Reflection 3 in response to Davis (2013b)]

Noting the relevance of these concepts to multiple marginalized groups, some students became more attuned to issues of inequality in their day-to-day lives. This awareness led to empathy that could inform the decisions they make as communicators: for example, taking care to use people-first language and respecting the rights of people to name aspects of their own identity:

“I think I’m more aware of those around me and the automatic judgments that are passed, and things like that. So, I think that social justice and accessibility and all of that really played a role in how I view those around me.” [Source: Interview]

“It’s very important that we understand the definitions and terms [preferred by members of marginalized groups] but also understand, kinda, what they’re going through. Take a walk in their shoes.” [Source: Reflection 4 in response to Price (2013)]

We find this increased critical awareness particularly encouraging in light of students’ early perspectives on social justice. Students consistently described their views of social justice at the beginning of the semester as unrelated to their own lives and certainly to their profession, with many explaining either that they had never heard the term before or that they had vaguely related it to notions of picketing and protesting:

“Student: I didn’t think it [social justice] had anything to do with technical writing at all. I just thought it was people, like, campaigning for different things or fighting for different rights. [. . .] I had an idea it was doing the right thing, but I didn’t figure that was a big part of technical writing at all.

Interviewer: Did your perspective change over the course of the semester?

Student: One hundred percent. It was crazy. When I would create designs, I wouldn’t factor in different audiences. That’s the main thing. […] It just didn’t really factor into my designs. I felt like a really bad person after that, but I’m glad I took this class because now I know.” [Source: Interview]

We see this increased critical awareness—e.g., moving from vague notions of social justice to a commitment to consider marginalized audiences in one’s communication design—as a good start. But the complexity of understanding, commitment to righting unjust inequalities, and awareness of complicity varied across students. For example, Table 1 suggests student 20 did not embrace (or perhaps did not understand) these notions, even advocating for design strategies that were explicitly identified as oppressive in the readings:

“We can learn from these poster children in our own design. Creating something that is rhetorically pleasing and evokes emotion is the surefire way to grab people’s attention.” [Source: Reflection 4 in response to Longmore (2013)]

Also, while many students embraced people-first language, others resented what they saw as constraining political correctness:

“[Using people-first language] can be very important in emphasizing the fact that they’re a person first, but at the same time it can really grate on people sometimes, too, to have their vocabulary policed like that. And it can create negative feelings.” [Source: Interview]

As the above quote suggests, not all students saw social justice as a major professional consideration, even by the end of the semester; however, the data did show a consistent and clear pattern of increased critical awareness informing their communication design to be more inclusive. From the same student:

“In the end, it isn’t just about disabilities, it is about everyone’s right to be a part of society and to make their own choices in their lives.” [Source: Reflection 4 in response to Samuels (2013)]

Conclusion

This article addresses the need for more research on pedagogical practices that supplement instrumental considerations of communication design with ethical considerations of social justice. As instructors have expressed difficulty and concern for how to implement such practices in their teaching, we have proposed a strategy: introducing issues of social justice to students by initially pointing their attention to disability and its immediate and more accessible exigency to communication design.

Drawn from our action-research/service-learning project in which such a class was taught, we present three themes from students’ discussion and practice: 1) an expanded notion of what it means to be an effective, credible, and ethical technical communicator; 2) an ability to recognize exclusionary communication design and revise toward inclusivity; and, as they begin to view accessible composing not only as a role of communication designers, but as an ethical commitment to inclusivity, many students 3) articulated a more complex critical awareness of social justice beyond concerns specific to disability.

These themes are not disparate, and their relationships are important. We believe that the earlier themes are a precondition for the later themes. In viewing the distribution of themes in Table 1, we can see that theme C appears more frequently in data types produced toward the end of the semester and that it almost always appears after or alongside the first two themes (A and B). This suggests that inclusive practices facilitated by attention to accessibility can serve as first steps in enacting social justice as a professional habit in the sense of a neo-Aristotelian virtue. Technical communication instructors interested in social justice are struggling to find ways of introducing the topic to students who are accustomed to instrumentalist ways of thinking (Scott 2004). From a student interview:

“Part of the reason we’re taking this [course] is to see the different points of view and to form our own opinions about it. And to a certain extent, we do need that background to see where all these other people are coming from. But, since it’s a course that’s preparing us to go out into the work-field and to be technical writers, I did feel that we need to have most everything in the course to have a practical application.” [Source: Interview]

We believe understanding these connected themes as conditions for one another (not necessarily as a progression, though it might occur in that manner) can help instructors develop pedagogical strategies for implementing social justice concerns. Importantly for reaching instrumentalist students, these strategies are neither didactic nor extraneous to the most important issues in the field.

For students to begin thinking of communication design as an ethical endeavor, one with implications of social justice, they must also see such an ethical stance as relevant to their personal and professional goals. Research shows that students are more motivated to learn if the instructor connects the material to students’ interests and that incorporating goal-directed practices is critical (Ambrose et al. 2010). This is why beginning the conversation with disability is so fruitful. Accessible design feels practical to students, so it is congruent with instrumentalist views of the field. This strategy allows instructors to introduce social justice by building out from a shared foundation.

In what they may expect to be an instrumental course on digital media, students can be unwilling to engage with “uncomfortable” injustices relating to race, sexuality, and other identities. Starting with disability allows students to recognize more easily the existence of privilege and how societal norms serve some populations better than others. This places the students in a better position to talk about what they might consider more uncomfortable facets of privilege (race, gender, class)—facets many of them have been taught to reject outright or view as an agenda in contradiction to their own personal value systems. Disability is not readily associated with any particular political position and thus can enable more digestible consideration of other social justice topics.

Our hope is that this article will provide not only new strategies for those introducing students to the idea that social justice is relevant to communication design but also give encouragement to those instructors who wish to do so but do not know where to begin. As a concluding remark, let us say that by positing disability as insight into social justice pedagogy in communication design, we have no wish to relegate disability as an issue of lesser importance or lesser complexity than other issues (such as race, class, gender, and sexuality). Just because we are advocating disability as a starting point to engage with broader concerns of social justice does not mean that disability in and of itself does not require deep critical engagement. If anything, not enough work has been done on disability in communication design, particularly technical communication, and here we help raise disability as a central concern for all technical communicators, especially those instructors interested in social justice pedagogy.

Acknowledgments

We’d like to thank Jeanie Peck and Alma Burgess at the Center for Persons with Disabilities at Utah State University. Their partnership was key to the service-learning component of the course we discuss in the article. Thank you also to our students, who graciously participated in this research, allowing us to learn alongside them. We would also like to thank special issue editor Andrew Lucchesi for bringing this issue to fruition and to acknowledge Sushil Oswal’s contribution in conceptualizing this special issue.

Bibliography

Agboka, Godwin Y. 2013. “Participatory localization: A Social Justice Approach to Navigating Unenfranchised/disenfranchised Cultural Sites.” Technical Communication Quarterly 22(1): 28–49.

Ambrose, Susan A., Bridges, Michael W., DiPietro, Michele, Lovett, Marsha C., and Marie K. Norman. 2010. How Learning Works: Seven Research-Based Principles for Smart Teaching. San Francisco, CA: Jossey-Bass.

Aristotle. 2011. Aristotles Nicomachean Ethics, trans. Robert C. Bartlett and Susan D. Collins (Chicago: U of Chicago P).

Baynton, Douglas C. 2013. “Disability and the Justification of Inequality in American History.” In The Disability Studies Reader, 4th edition, edited by Lennard J. Davis (New York, NY: Routledge), 17-33.

Blythe, Stuart, Grabill, Jeffrey T. and Kirk Riley. 2008. “Action Research and Wicked Environmental Problems: Exploring Appropriate Roles for Researchers in Professional Communication.” Journal of Business and Technical Communication 22(3): 272-298. .

Bowdon, Melody. 2004. “Technical Communication and the Role of the Public Intellectual: A Community HIV-prevention Case Study.” Technical Communication Quarterly 13(3): 325–340.

Braun, Virginia and Victoria Clarke. 2006. “Using Thematic Analysis in Psychology.” Qualitative Research in Psychology, 3(2): 77–101.

Clark, Dave. 2004. “Is Professional Writing Relevant? A Model for Action Research.” Technical Communication Quarterly 13(3): 307-323.

Crabtree, Robbin D. and David Alan Sapp. 2005. “Technical Communication, Participatory Action Research, and Global Civic Engagement: A Teaching, Research, and Social Action Collaboration in Kenya.” REFLECTIONS: A Journal of Rhetoric, Civic Writing and Service Learning, 4(2): 9–33.

Davis, Lennard J., ed., 2013a. The Disability Studies Reader, 4th ed. New York: Routledge.

Davis, Lennard J. 2013b. “Introduction: Disability, Normality, and Power.” In The Disability Studies Reader, 4th ed., edited by Lennard J. Davis (New York: Routledge), 1-16.

Denzin, Norman K. 1978. Sociological Methods. (New York: McGraw-Hill).

Elmore, Kimberly. 2013. “Embracing Interdependence: Technology Developers, Autistic Users, and Technical Communicators.” In Rhetorical Accessability, edited by Lisa K. Meloncon (Amityville, NY: Baywood), 15-38.

Emens, Elizabeth F. 2013. “Disabling Attitudes: U.S. Disability Law and the ADA Amendments Act.” In The Disability Studies Reader, 4th ed., edited by Lennard J. Davis (New York: Routledge), 42-60.

Faber, Brenton D. 2002. Community Action and Organizational Change: Image, Narrative, and Identity. (Carbondale, IL: Southern Illinois UP).

Garver, Eugene. 2006. Confronting Aristotles Ethics: Ancient and Modern Morality. (Chicago: U of Chicago P).

Grabill, Jeffrey T. 2000. “Shaping Local HIV/AIDS Services Policy through Activist Research: The Problem of Client Involvement.” Technical Communication Quarterly 9(1): 29-50.

Gutsell, Margeret and Kathleen Hulgin. 2013. “Supercrips Don’t’ Fly: Technical Communication to Support Ordinary Lives of People With Disabilities.” In Rhetorical Accessability, edited by Lisa K. Meloncon (Amityville, NY: Baywood), 84-94.

Haas, Angela M. 2012. Race, Rhetoric, and Technology: A Case Study of Decolonial Technical Communication Theory, Methodology, and Pedagogy. Journal of Business and Technical Communication 26(3): 277–310.

Herndl, Carl. G., ed., 2004. “Critical Practice in Rhetoric and Professional Communication.” Special issue, Journal of Business and Technical Communication 18(1).

Jarrett, Caroline, Redish, Janice (Ginny), and Kathryn Summers. 2013. “Designing for People Who Do Not Read Easily.” In Rhetorical Accessability, edited by Lisa K. Meloncon (Amityville, NY: Baywood), 39-66.

Jones, Natasha N. and Rebecca Walton. Forthcoming. Using Narratives to Foster Critical Thinking About Diversity and Social Justice, in Integrating Theoretical Frameworks for Teaching Technical Communication, M. Eble and A. Haas (eds.).

Lewthwaite and Swan 2013 “Disability Web Standards, and the Majority World.” In Rhetorical Accessability, edited Lisa K. Meloncon (Amityville, NY: Baywood), 157-174.

Leydens, Jon A. 2012. “What does Professional Communication Research have to do with Social Justice? Intersections and Sources of Resistance.” In Professional Communication Conference (IPCC), 2012 IEEE International 1-13.

Linton, Simi. 1998. Claiming Disability: Knowledge and Identity. New York, NY: NYU Press.

MacIntyre, Alasdair C. 2007. After Virtue: A Study in Moral Theory, 3rd ed. Notre Dame, IN: University of Notre Dame Press.

Meloncon, Lisa K., ed. 2013a. Rhetorical Accessability: At the Intersection of Technical Communication and Disability Studies. (Amityville, NY: Baywood).

Meloncon, Lisa K. 2013b. “Toward a Theory of Technological Embodiment.” In Rhetorical Accessability, edited by Lisa K. Meloncon (Amityville, NY: Baywood), 67-82.

Miles, Matthew B., and A.M. Huberman. 1994. Qualitative Data Analysis: An Expanded Sourcebook, 2nd ed. Thousand Oaks (CA: Sage).

Miller, Carolyn R. 1979. “A Humanistic Rationale for Technical Writing.” College English 40(6): 610–617.

Moeller, Ryan, Walton, Rebecca, and Ryan Price. 2015. “Participant Agency and Mixed Methods: Viewing Divergent Data Through the Lens of Genre Field Analysis.” Present Tense 5(1).

Moore, Kristen. 2013. “Exposing Hidden Relations: Storytelling, Pedagogy, and the Study of Policy.” Journal of Technical Writing and Communication 43(1): 63-78.

Nozick, Robert. 2013. Anarchy, State, Utopia, 2nd ed. (New York: Basic Books).

Oswal, Sushil K., and Beth L. Hewett. 2013. “Accessibility Challenges for Visually Impaired Students and Their Online Instructors.” in Rhetorical Accessability, edited by Lisa K. Meloncon (Amityville, NY: Baywood), 135-156.

Patton, MQ. 1999. “Enhancing the quality and credibility of qualitative analysis.” HSR: Health Services Research. 34(5) Part II: 1189-1208.

Price, Margaret. 2013. “Defining Mental Disability.” In The Disability Studies Reader, 4th ed., edited by Lennard J. Davis (New York: Routledge), 298-307.

Rawls, John. 1971. A Theory of Justice. (Cambridge, MA: Belknap Press of Harvard UP).

Rude, Carolyn. D. 2009. “Mapping the Research Questions in Technical Communication.” Journal of Business and Technical Communication 23(2): 174–215.

Samuels, Ellen. 2013. “My Body, My Closet: Invisible Disability and the Limits of Coming Out.” In The Disability Studies Reader, 4th ed., edited by Lennard J. Davis (New York: Routledge), 316-332.

Scott, J. Blake. 2004. “Rearticulating Civic Engagement through Cultural Studies and Service-Learning.” Technical Communication Quarterly 13(3): 289-306.

Scott, J. Blake. 2008. “The Practice of Usability: Teaching User Engagement Through Service-Learning.” Technical Communication Quarterly 17(4): 381-412.

Scott, J. Blake, and Bernadette Longo, eds., 2006. “Making the Cultural Turn.” Special issue, Technical Communication Quarterly 15(1): 3-7.

Vallor, Shannon. 2010. “Social Networking Technology and the Virtues.” Ethics and Information Technology 12(2): 157-170.

Walton, Rebecca, and Natasha N. Jones. 2013. “Navigating increasingly cross-cultural, cross-disciplinary, and cross-organizational contexts to support social justice.” Communication Design Quarterly Review 1(4): 31-35.

Walton, Rebecca, Zraly, Maggie, and Jean Pierre Mugengana. 2015. “Values and Validity: Navigating Messiness in a Community-Based Research Project in Rwanda.” Technical Communication Quarterly 24(1): 45–69.

Williams, Robin. 2010. The Non-Designers Presentation Book: Principles of Effective Presentation Design. Berkeley, CA: Peachpit Press.

Youngblood, Susan A., and Jo Mackiewicz. 2013. “Lessons in Service Learning: Developing the Service Learning Opportunities in Technical Communication (SLOT-C) Database.” Technical Communication Quarterly 22(3): 260–283.

Zdenek, Sean. 2011. “Which Sounds Are Significant? Towards a Rhetoric of Closed Captioning.” Disability Studies Quarterly 31(3). http://www.dsq-sds.org/article/view/1667/1604

[1] Email correspondence, July 12, 2014.

[2] Like almost all IRB-approved studies, ours allows participants to withdraw at any time—including after grades were submitted—but it was in the period before grade submission that the risk of coercion warranted an intermediary in the withdrawal process.

About the Authors

Jared S. Colton is an assistant professor of technical communication and rhetoric at Utah State University. His research addresses the intersections of rhetorical theory, ethics, and politics within professional and technical communication, whether in pedagogy or sites of social justice. He is particularly interested in how classical and contemporary ethical frameworks inform the production, practice, and critique of collective activism via social and mobile media and accessibility technologies. He has published in Enculturation, Rhetoric Review, and the Journal of College Science Teaching.

Rebecca Walton is an assistant professor of technical communication and rhetoric at Utah State University. She studies the role that communication can play in more equitably distributing power. Her research interests include social justice, human dignity and human rights, and qualitative methods for cross-cultural research. Her work has appeared in Technical Communication Quarterly; Journal of Business and Technical Communication; and Information Technologies and International Development, as well as other journals and edited collections.

This is an image of a screen that would appear on a window.
1

Disability, Mental Illness, and eLearning: Invisible Behind the Screen?

Dr. Mike Kent, Curtin University

Abstract

This article reports on a recent study of students who registered for disability support while studying fully online through Open Universities Australia. The first stage of research was a survey of students who registered for disability support with the organization. This survey found a very high proportion of these students–44.9 percent–identified as people with a mental illness, prompting a second stage of the research where students who had identified as a person with mental illness were interviewed individually. Using this data, the article explores some of the benefits and potential problems students with disabilities experience while studying online, before focusing more specifically on the implications for people with a mental illness. The paper then looks at how mental disability remains a relatively unexplored area of inquiry and how this can partly be explained through the contested place that mental illness holds as an impairment in the broader field of disability studies, particularly in relation to the social model of disability. Finally the article concludes by making a call for further research into best practice for online technological and pedagogical design to better support and enable this group of students. It recommends how the potentially disabling structures of academic institutions could be reformed to better enable a more accessible learning environment. The first step in this process is to recognize these students as having a legitimate impairment that needs to be addressed and accommodated in the contemporary higher education environment.

Background

Online education has been a rapidly growing part of the higher education sector over the past fifteen years (Allen and Seaman 2014, 5; Sugar, Martindale, and Crawley, 2007, 365; Wait and Lewis, 2003, iii). When students are fully online we often will not meet them until they graduate. In this context, making sure what is offered is accessible to everyone, particularly students with a disability, is vital. There are a number of advantages to studying online for students with disabilities (see Dobransky and Hargittai, 2006; Fitchen et al., 2009; Roberts, Crittenden and Crittenden 2011). However, online students with a disability can become invisible, and this can lead to unintended accessibility problems. Students with disabilities are underrepresented in tertiary education (see Sachs and Schreuer 2011; Wentz, Jaeger and Lazar 2011), and this seems to be particularly the case in Australian higher education where some estimates put the number of these students as low as four percent (Ellis 2011, 1) compared to between eight and fourteen percent in the United States and United Kingdom (Sachs and Schreuer 2011, para 2). In this context, Open Universities Australia (OUA) had approximately 6.37 percent of the student body who identify as having a disability in 2014.

Open Universities Australia is a consortium of seven Australian universities and brings together fifteen different institutions teaching higher education to students fully online across a number of different fields at both an undergraduate and postgraduate level. Each institution involved produces its own online courses that are presented under the OUA banner. OUA offers four study periods a year running back to back for thirteen weeks each. Students are given the option to disclose that they have a disability to OUA as part of the enrolment process; however, privacy legislation in Australia means that OUA does not pass this information on to the specific institutions where the students are studying. As Roberts, Crittenden and Crittenden (2011, 246-247) found, students are often reluctant to disclose that they have a disability–even if it means that they are unable to access course material–a situation that is no doubt made worse if multiple disclosures are required to different organizations. It also means that when students do not come forward, institutions may be unaware of the accessibility requirements of a particular cohort and not construct an appropriate learning environment that would potentially negate the need for disclosure in the first place.

In October 2014, an online survey was conducted to explore the attitudes and conditions of students with disabilities studying through OUA. An invitation to participate was sent via email to each of the students that had registered for disability support. The survey explored two key areas; first, the survey focused on how accessible the different online platforms used for teaching and learning by the different institutions were. Second, the survey focused on the student’s level of disclosure to each institution, looking at what motived students to disclose their disability or not, and for those who did, if the accommodation and support offered was effective. The survey also solicited volunteers who might be interested in participating in further follow-up research. From these volunteers, eleven students who identified as having mental illness were individually interviewed to provide further depth to the survey’s results.

OUA invites students who register as having a disability to select from eight separate categories of impairments: hearing, learning, mobility, vision, medical, intellectual disability, acquired brain impairment, and mental illness. By mimicking these broad categories, the survey was able to look at the specific impacts of these impairments as they relate to accessibility, disclosure, and the effectiveness of any accommodation offered. The survey sample matched well against the total student body with a disability, in terms of age, gender and types of impairments reported.

One of the significant findings of this survey was the number of students in the sample who reported as having a mental illness. Students with mental illness have, in the past, formed a relatively small group of students within the broader disability category. The United States Department of Education reported that for all university enrolments in 2008 among the students who identified as having a disability only fifteen percent reported having a mental illness (as cited in Lee, 2014, 40). However, this study found that within the OUA cohort this number was significantly higher, making up 46.3 percent of survey respondents.

OUA does not prominently release its information on the number of students with disabilities. However, when this data is released, the specific impairment categories of intellectual disability, acquired brain impairment, and mental illness are labelled under “other” along with other students who have an impairment that does not map onto one of the five other categories. This “other” category then makes up 54.2 percent of all impairments and serves to mask the high level of students studying through the institution with a mental illness.

In the broader community the Australian Bureau of Statistics found that in 2007 the proportion of people with mental illness in Australia was 17.6 percent for men and 22.3 percent for women. In the United States in 2014 the Congressional Research Service quotes studies with figures between 32.4 percent and 24.8 percent using different methodologies (Bagalman and Napili, 2015, 1). If the survey sample was applied to all students who registered as having a disability at OUA, they would be significantly underrepresented, making up only three percent of the student body.

The next section will examine the potential of eLearning for people with mental illness. It will also examine some of the barriers presented to this form of learning. It might be pointed out that often these are as much related to pedagogy and the structural nature of higher education than to any specific technology. Further, these barriers are often caused by a lack of understanding and awareness more than active discrimination, a situation that is certainly exacerbated by the relatively hidden nature of mental illness as a disability–particularly in an online environment. This hidden nature, it will be argued, comes not just from the stigma that is often associated with this type of disability, both by people who have mental illness as well as others (Holmes and River, 1998, 231; Corrigan and Rao, 2012, 464), but also from the relationship between mental illness and the disability social justice movement, and the discipline of disability studies that it informs. Before turning more specifically to mental illness, it is useful to position this type of impairment and its relation to the broader issues facing all students with disabilities in the higher education environment, particularly in an online learning and teaching context.

Disability and eLearning

There are a number of areas in which eLearning can work to the advantage of people with disabilities when studying in a higher education context. These revolve around the three areas of accessibility, flexibility, and disclosure (Kent 2015, para 11). Online information can be made available in a variety of formats to best suit the person accessing it, whether this is visual through a screen displaying images or text, audio as spoken words and sound, or touch devices such as a Braille tablet or Lorm glove, and increasingly through wearable technologies such as mobile phones and smart watches. There are also a variety of different ways this information can be entered, as well as retrieved, again allowing for greater accessibility for both students and teaching staff with different types of impairments.

This is not to say that eLearning sites are always designed to maximize this affordance. Students with disabilities face a range of challenges in higher education and online higher education environments. Borland and James (1999, 89) found students with disabilities felt ‘invisible’ or unimportant within higher education and experienced negative attitudes from staff and other students. Sach and Schreuer (2011, para 8) found students were reluctant to disclose that they had a disability in a face-to-face context, particularly those with what can be considered an invisible disability. In an online context many more disabilities can become invisible (see Ellis and Kent, 2011). Roberts, Crittenden, and Crittenden (2011, 246-247) found that online students were reluctant to disclose a disability, even if it meant that they were unable to access resources that were made available in inaccessible formats. Fitchen et al. (2009, 241), Kelly (2009, para 1-2) and Van be Bunt-Kokhuis and Bolger (2009, 1) all found problems with the accessibility of online content, for instance documents can be formatted in a way that prevents assistive technology such as screen-readers from working properly, and videos can be uploaded without assistive captions for people with hearing impairments. These are problems that need to be overcome through inclusive design of both the technology and pedagogy of online learning; these studies do highlight some of the existing problems in this environment.

Despite the use of online technology sometimes being problematic, it does provide a number of more flexible options for students with disabilities. Inaccessible or difficult to access lecture theatres and tutorial rooms can be avoided. Problems associated with travel to a traditional campus and spending time there can be similarly avoided. Even problems with accessing some of the social aspects of university life can be reinterpreted online (see Leaver, 2014). With this flexibility also comes the affordance of controlling disclosure of a specific impairment. Muilenburg and Barge (2005, 40) found that students with disabilities who had experienced previous discrimination in face-to-face learning situations were actively attracted to online learning. Good accessible design makes eLearning more accessible for everyone, conversely, poor design can make content hard to access for all students regardless of impairment. As Case and Davidson (2011, 47) observe: “Making technology such as online learning accessible is ethically appropriate, economically sensible, and self-serving, as everyone may need accessible technology as the population grows older.”

Among the impairment types that can disappear online, many types of mental illness are a prominent group. This invisibility is often what a student desires, but when coupled with the reluctance of institutions to disclose the number of students in this category it becomes a further barrier to the awareness and intervention required to make eLearning inclusive for this group.

The Study

In 2014 Open Universities Australia had 42,898 students enrolled. Of these 2,925 identified as having a disability and 1,480 of these had registered for disability support with OUA. This last group of students was each emailed an invitation to participate in an online survey, and 352 students chose to participate. The survey was run through the online Survey Monkey platform and consisted of 17 questions. The first four questions looked at demographics including age, gender, level of education and the impairment type the respondent identified. These responses were broadly in line with the demographics collected by OUA for the full cohort of students to whom the survey invitation was sent. The next two questions looked at how long the person had been a student and the type of study the student was undertaking. Questions seven, eight and nine asked about any accommodation the students might have received as part of their studies, questions ten and eleven looked at issues around disclosure and questions twelve through sixteen looked specifically at technology and online learning systems, and how accessible they were for the students. Finally, question sixteen asked about the student’s opinion of OUA as a place to study, and question seventeen gave the respondents the opportunity to indicate that they would be interested in participating in further research. A summary of the responses can be found in Appendix A.

There was a very high response rate to the final question asking if the participants would like to participate in further research with a 63.4 percent positive response. For students who had identified as a person with mental illness this positive response rate rose to 71.1 percent. Given this seeming eagerness on behalf of the respondents to have their voices heard, and the high proportion of students who identified as being a person with mental illness, in 2015 a series of follow-up interviews were held, looking specifically at students who identified as having mental illness. These interviews were conducted online, either through Skype or an exchange of emails, and looked specifically at the impact of this type of impairment on the accessibility of online learning. This second stage of the research was designed to answer calls, specifically from people with mental illness, for research that is conducted “with” not just “on” this group (McWade, Milton and Beresford, 2015, 305).

These semi-structured interviews expanded the survey’s focus on technology to also look at teaching practice and pedagogy. An invitation to participate was sent to each of the individuals who had indicated that they would be interested in further research and who had left a valid email address. Eleven interviews were conducted via Skype or email. Six of these reported mental illness as their only impairment, while the remaining five reported multiple impairments including mental illness.

Mental Illness and eLearning

In 1999 McLean and Andrews found that university students in Australia with psychiatric disorders faced major problems completing their course of study. They found students suffered problems completing assessment tasks within the timeframe allotted and regularly attending classes due to fluctuating symptoms, as well as stigmatized treatment by staff and other students. ELearning can add to the accessibility of higher education for people with disabilities, and this is particularly true for people with mental illness, although the affordance of this potential accessibility depends on appropriate digital and pedagogical design. There are a number of potential pitfalls for online design that can impact different types of mental illness. People with mental illness will also often have other impairments that impede their access to online content. The interviews indicated this was the case for slightly more than half the people interviewed and the survey found that 41.6 percent of respondents who identified as having a mental illness also identified as fitting into one or more other impairment categories.

While in this paper mental illness is referred to in a very general sense, it must be acknowledged that this broad category of impairment can manifest in a wide variety of different manners. The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (2013) details 48 different categories of mental illness listed with numerous sub-classifications. This diversity is important to acknowledge as there is always a danger that when compensating for one element of impairment a barrier is created for others. A commonly used example is curb-cuts on the side of the road which make the urban environment less difficult for wheelchair users to navigate, but more difficult for people with a vision impairment who use the raised footpath to identify the edge of the road. While the ability to present different types of information online to different users greatly assists the development of universal design in eLearning, the potential for digital curb-cuts to develop must be considered. Different impairments will require different, and potentially incompatible, ways to navigate around the Web, both at the hardware and software level. Innovations that for example allow greater access for people with vision impairments, such as audio descriptions, will not be accessible by people with hearing impairments (see Ellis and Kent 2011). These mutually incompatible barriers also have the potential to impact across the diverse range of mental illness.

The interviews allowed for a more in depth investigation of what type of mental illness this category contained. Of the eleven students interviewed, consistent with the prevalence of different types of mental illness in the broader Australian population, depression and anxiety were two of the most prominent conditions along with post-traumatic stress disorder (Australia Bureau of Statistics, 2008, 8). Of the eleven interviewees six reported having conditions related to depression, four anxiety and four post-traumatic stress disorder, along with one person with obsessive compulsive disorder. Four of the eleven interviewees reported having more than one of these conditions. Two of the respondents reported having previously had episodes of suicidal thoughts associated with their studies.

The three areas that make eLearning attractive for students with disabilities are accessibility, flexibility and disclosure. Particularly for students with mental illness, eLearning allows them to avoid many of the problems they might face if they had to attend classes on a physical campus, and have the flexibility to work within the changing parameters of their impairment. Similarly, the affordance provided through eLearning to have more control of the disclosure of their disability, particularly in light of the issues around stigma, is an important feature.

As one student observed:

“Not being a physical or noticeable illness, there is a lot of stigma attached to depression and its associated conditions and as such you just have to ‘push through’; unfortunately this at times can be more detrimental for you personally. But it is often the case where we are told just harden up, which then makes you feel worse as a person.”

This can also impact students’ attitudes towards disclosure and thus their ability to receive any accommodation in relation to potentially inaccessible parts of their studies, one interviewee explained:

“I haven’t actively applied for assistance mostly due to a feeling of shame and inadequacy regarding my disabilities.”

The survey found that across all the institutions accessed through OUA, students who responded to the survey would disclose to the institution where they were studying that they had a disability 60.3 percent of the time. For students who listed mental illness as an impairment, this number dropped noticeably to 48.4 percent. Given the potential stigma felt by people with mental illness (see Holmes and River, 1998; Corrigan and Rao, 2012), and the reluctance of students with any disability to disclose that they have a disability, it is likely that the number of students studying online who have a mental illness is higher than the results of this survey would indicate. As another student observed:

“This was a massive decision for me. First mental health has a stigma still and it’s hard to admit to this to others. Second it has been hard to accept my limitations when I have always been a very academic person who used to read and study for hours on end.”

The actual process of disclosure could also be difficult in itself beyond issues of stigma.

“The first dealing with [University] Disabilities Services sent me into a depression spin that put me out of commission for a week. Their style of questioning was intrusive and insensitive.”

Another student’s experience also showed that it was not always a simple process.

“When I did reveal my depression the institution was reluctant to accept my disability. Once they did it helped and the university facilitated me seeing a councilor”

Another student also noted that these difficulties extended beyond the disability office and through the whole university institution.

“For everyone’s talk about wanting to help us, we have to jump through some ridiculous hoops to get that help. And even when we do our worries or concerns can be overlooked, not even just by the school itself but by other students and facilities. Other groups such as sport or music student groups, or charity work done on campus, can ignore our needs when we want to take part or volunteer”

Even once they have gotten past issues related to stigma and disclosure, students with mental illness face problems more directly related to the learning environment. The total percentage of students who reported difficulty with accessing online learning platforms due to their disability was slightly lower for students with mental illness, at 16.8 percent compared to 18.7 percent of students in the survey who did not identify as having mental illness. However, the responses from the students who did have difficulty showed a noticeable impact on the accessibility of different online platforms used in learning and teaching for people with mental illness. The table below shows the responses to the survey for students who identified as having a mental illness and that had trouble accessing online learning platforms. The second to last column indicates the percentage of students who responded to the survey and did not identify as having a mental illness and the final column the difference between the two. There are clearly large differences in the accessibility of different platforms for students with mental illness compared to other students with disabilities with some platforms seemingly presenting more troubles and others proving to be more accessible.

alt=’This table lists the different online platforms listed in the survey and students level of difficulty in accessing them. It compares the difficulty experienced in the survey by students who identified as a person with mental illness and the students who did not. There are 10 columns in the table and fifteen rows. The first column lists the online platforms that were asked about in the survey. The second column lists how many students had not used the platform, the next four columns list the students who had used the platform and how difficult they found it to access from “no problem” to “minor problems”, “major problems” and “unusable”. The next column lists the total number of students who used the platform, followed by the column that lists the percentage of students who had problems. The next column lists the percentage students reporting a problem with the platform from the survey who did not identify in the survey as having a mental illness, and the final column lists the difference in percentage between these two groups. The top row of the table labels each of the columns and each subsequent line looks at the data from a specific online platforms. The data reads as follows: Moodle, not used 44, no problems 14, minor problems 5, major problems 0, unusable 0, total used 19, percent problems 26.3, percent problems (without mental illness) 43, difference negative 16.5 percent. Blackboard, not used 10, no problems 32, minor problems 20, major problems 5, unusable 1, total used 58, percent problems 44.8, percent problems (without mental illness) 51, difference negative 6.5 percent. Facebook, not used 26, no problems 32, minor problems 4, major problems 1, unusable 1, total used 38, percent problems 15.8, percent problems (without mental illness) 26, difference negative 10.4 percent. Twitter, not used 40, no problems 21, minor problems 2, major problems 0, unusable 1, total used 24, percent problems 12.5, percent problems (without mental illness) 11, difference 1.4 percent. Slideshare, not used 58, no problems 4, minor problems 0, major problems 1, unusable 0, total used 5, percent problems 20, percent problems (without mental illness) 8, difference 11.7 percent. Prezi, not used 55, no problems 6, minor problems 0, major problems 1, unusable 0, total used 7, percent problems 14.3, percent problems (without mental illness) 18, difference negative 3.4 percent. Lectopia, not used 55, no problems 5, minor problems 1, major problems 2, unusable 0, total used 8, percent problems 37.5, percent problems (without mental illness) 41, difference negative 3.4 percent. Echo 360 / echo center, not used 38, no problems 14, minor problems 9, major problems 2, unusable 1, total used 26, percent problems 46.2, percent problems (without mental illness) 50, difference negative 3.8 percent. PDFs, not used 13, no problems 37, minor problems 9, major problems 2, unusable 1, total used 49, percent problems 24.5, percent problems (without mental illness) 33, difference negative 8.8 percent. Blogger, not used 49, no problems 9, minor problems 3, major problems 1, unusable 0, total used 13, percent problems 30.8, percent problems (without mental illness) 20, difference 10.8 percent. WordPress, not used 48, no problems 11, minor problems 2, major problems 1, unusable 0, total used 14, percent problems 21.4, percent problems (without mental illness) 11, difference 10.3 percent. WebCT, not used 56, no problems 5, minor problems 0, major problems 1, unusable 0, total used 6, percent problems 16.7, percent problems (without mental illness) 22, difference negative 5.6 percent. YouTube, not used 18, no problems 41, minor problems 1, major problems 3, unusable 0, total used 45, percent problems 8.9, percent problems (without mental illness) 31, difference negative 22.6 percent. University Websites, not used 7, no problems 39, minor problems 15, major problems 6, unusable 1, total used 61, percent problems 36.1, percent problems (without mental illness) 49, difference negative 13.3 percent.’
Despite these findings in the interviews students expressed their satisfaction with both the Blackboard platform and the OUA website, amongst others, as can be seen in these comments.

“Blackboard interaction with tutor/peers is helpful, enables discussion in an open and accepting forum. E-mail communication with tutor is also helpful, as allows me to narrow areas of concern and focus on requirements.”

“Blackboard has been great. It’s generally easy to understand and use. Further to this, as more than one uni uses blackboard it means that the general layout is the same.”

“Collaborate sessions and video tutorials work well”

“The oua website has been very helpful. When the website was upgraded I struggled to understand how to navigate it, however has pretty much figured it out again.”

“The online library has been great as well and have always found what I am looking for without issue.”

“Facebook pages help ease isolation–it’s a new thing.”

The students also noted other tools that they found more difficult:

“The Collaborate function which allows for personal communication has not been successful for me as I am uncomfortable with this platform and it leaves me feeling inadequate.”

“I have sometimes struggled with universities that do not use blackboard but rather their own websites to obtain information. Ultimately it results in having five log ons, five passwords and trying to navigate your way around many different sites. While this wouldn’t normally be an issue, when confusion and memory are major issues, it can be hard to try and resolve how to use these differing sites.”

“Social Media causes trouble.”

As can be seen in the comments about Blackboard Collaborate, social media and websites, as well as the interview and survey responses to Blackboard, a platform that works well for one person may be hard to access for another. As the comment on the OUA website indicates, this can also be the case for the same platform and person in different circumstances.

Accessibility problems are not just about online teaching platforms. As Guglielman (2010, 1) observed, eLearning needs to address accessibility and inclusion from both the perspective of technology and pedagogy. This is particularly true for students with mental illness. There were a number of areas related to learning, teaching, and educational design that the students highlighted in the interviews.

“I like the OUA system of providing reading material, guided discussions/mandatory db posts and written assessments/online quizzes. I am able to work at my own pace without having to wait for others. Allows me freedom to race ahead, then circle around and start from the beginning again.”

“The second unit I speak of employed the use of a portfolio for two of it’s [sic] assessments. Which was (ideally) worked on each week and marked at two intervals throughout the study period. An activity was completed for each week’s learning, for a total of 12 portfolio pieces of which a select few were randomly chosen and graded. As someone who becomes quite anxious and suffers performance anxiety this was a great idea as it took the extreme pressure off as you essentially had 12 chances to prove yourself, and you were getting tested on everything learnt so you were going to have your strengths and weaknesses and it caused less anxiety as the task could be broken down in to ‘smaller’ sections as opposed to the ominous ASSESSMENT!”

“I would like to see more exams. I wouldn’t say I enjoy exams but I feel more comfortable with exams. I know I have done the work and that I have within me as a result the knowledge required to be an educator. I retain this information and I know that I can explain it and apply it in a classroom. Assignments unfortunately are not my specialty and unfortunately I’ve found with online education there is not an even ratio or even a ratio at all. It is 3 assignments a unit.”

“I personally prefer the typed text or pre-recorded lectures. This is twofold, one I again struggle in group environments. Two, due to concentration issues, I can only maintain focus for around ten minutes before stopping for around ten minutes then starting again. Therefore pre-recorded, or typed lectures are much easier to stop and start as needed.”

“I know it is not easy with online study, but my strongest recommendation is to enable a variety of assessment methods – I would like to see more exams (for the reason outlined above) or other assessment methods.”

“As I started the degree on line, I found I flourished with the challenge and could work more freely without the bullying that one experiences from some of the lecturers on campus in an art school. As I suffer from anxiety attacks, I was not able to cope with the personal attacks that are so unprofessional and actually make one want to never paint again.”

There were also a number of techniques that the students found harder to adapt to:

“Due to my disability I have trouble with concentration and memory. Therefore studying, especially for exams can be difficult with retaining information. That said, the disability support section has been exceptionally helpful in providing an area to sit away from others due to anxiety and extended time.”

“Needed help with Exams.”

“Individual assignment rather than group assignment, however I know this is just a factor of university. Anxiety disorders and relying on others with group work don’t function well together. Anxiety isn’t always rational and can be very hard to navigate your way through a group assessment.”

“Group projects (ARGH) … too much unknown, and reliance on other people. Own self-imposed high standards do not always translate across a shared assessment platform.”

“I had to withdraw from a unit due it bringing on my depressions, including thoughts of self-harm and suicidal thoughts. It was a philosophy unit in metaphysics the meaning of life etc.”

“I find exams hard.”

The students highlight in these comments different approaches to assessment and ways of working through learning content, both in terms of what works and what doesn’t. Comments such as the attractiveness of exams as a form of assessment appear as both positive and negative features. There are some good justifications for the design of assessment that includes hard set deadlines for assignments, the need for physical examinations and group work. However, these need to be considered against the disabling effect they have for many students, particularly those with mental illness. While in most cases a student seeking accommodation for this type of disabling assessment could be easily accommodated, this requires a level of disclosure that many students will not make. This prescribed approach to assessment is not necessary. One of the advantages of eLearning is that it is possible to offer more accessible alternatives to students without requiring any form of disclosure on their part. A unit could offer more than one type of assessment for the learning material to accommodate not just students with disabilities, but also different learning styles in all students.

These assessment design problems are compounded by the construction of the university teaching and administration systems. OUA offers four thirteen week study periods a year. While there are clearly operational reasons to keep this rolling period of study, it would also be possible to design units where students can progress at their own pace. This is an approach adopted by Open Colleges Australia–an organization that provides further education in a similar way that OUA provides higher education. At OUA, while a student can withdraw from a unit of study during a study period–and if they disclose that they are doing so due to the impact of mental illness they can normally do so without penalty–they must start that particular unit of study from the beginning in a subsequent study period and redo all assessment that they may have completed up until that point. If they resubmit assignments they had previously completed, it is considered a case of academic misconduct due to self-plagiarism. This is particularly hard for students who might struggle to be able to put in thirteen weeks of work at a time and must normally restart a unit of study from the beginning if they wish to attempt it again. There seems no reason why a student could not suspend their study, rather than withdraw and then re-join the unit in a later study period. Similarly, the institutional arrangements between OUA and the different organizations that provide the programs of study mean that students are faced with having to disclose their disability multiple times if they require any special consideration. As can be seen from the comments above, this is a source of unnecessary difficulty for the students based on meeting regulatory requirements, rather than what is the best for the students. There are good administrative arguments for the existing system; however, these also need to be seen as a significant form of institutional discrimination.

As with all types of disability there are also times for students with mental illness when the impairments impact the person regardless of inclusive design or any accommodation that might be offered, as these students observed:

“OCD, plays into aspects such as not being able to sit down and do uni work or undertake study until everything is in order. Sometimes this includes things like not being able to do uni work if I haven’t been to the gym, because it ‘throws my cycle off’. I then become anxious about satisfying a mental checklist so that my mind is at ease so I can complete my study.”

“Convincing myself that I am worthy enough to be doing the course. That I do deserve to be there and that I am capable of being a teacher/completing the degree. I become overwhelmed with feelings of failure. This could be in week one–I could read ahead about the assessments, become overwhelmed because I don’t understand it and I start to get anxious and worry I will fail which puts me in a negative mindframe and causes me to withdraw or avoid completely.”

During the interviews, students were asked what they would recommend to make study easier and they made a number of suggestions and recommendations, some of which are presented below:

“Also due to the stigma of mental health, while I have had no issues, it’s potentially worth advertising, or conveying that oua and associated universities are understanding and considerate regarding mental health disabilities. This would potentially help people feel more comfortable revealing this information.”

“Maybe it is worth considering putting trigger warnings on some units (related to depression).”

“Perhaps have an online place where people with disabilities can go and discuss things, how they’re doing, what they need help with. Something for all universities, all disciplines, no matter what. Have it accessible to hard of hearing people, to blind people, to people who have anxiety issues and can’t deal with being seen by people but can type to communicate instead. Create a support system for disabled students so that they don’t have to go through what I did for three years–trying to come to terms with my new diagnosis and a whole new world of learning and requirements. “

“There is minimal contact between admin at university and tutors regarding students with disability. This means that I either have to repeat my condition over and over to different people, or bring it up when I have issues, in which case it appears I am using it when it suits me which isn’t the case.”

“When registering the disability I provided reports from my psychiatrist and doctor which has been used for the exam conditions. I had to repeat this process for every university that I attended. It would be more efficient for students, if this process could be completed with oua then that’s then forwarded on to universities. Or if not possible, once provided by student to all universities that this info is provided to tutors so that they have an understanding of the struggles we may have.”

Other students also mentioned the importance of access to extensions to provide “breathing space” and a mental safety net and locally invigilated exams.

Seale and Cooper (2010, 1108) found that many teachers in higher education see the importance of making eLearning accessible–they are just not sure how. When the prevalence of a particular type of impairment, such as mental illness, is hidden this process is further complicated. The impacts of this can be seen in the use of online learning technology, the pedagogy that underpins the design of online learning and units of study, and finally at an institutional and administrative level. This lack of visibility is in part a consequence of people with disability’s reluctance to disclose that they have a disability. In an online environment, this is further exacerbated for people with mental illness by the stigma that is often associated with this type of impairment. However, mental impairment has always occupied a difficult place in discourses around disability that sets it apart in debates around accessibility and inclusion. Mental illness is often thought of, and treated, differently from other types of impairments. One way to try to understand this may be linked to the way this type of impairment has been conceived, particularly in relation to the social model of disability.

The social model of disability first articulated by Michael Oliver (1981), as a contrast to the medical model of disability, places the causes of disability on society, rather than an individual’s body. In this context it is not being a wheelchair user that is the disability; rather it is the construction of inaccessible stairs to gain entry to a building. For eLearning, it is the inaccessible technological, pedagogical and institution design of the learning environment, rather than any problem resulting from a particular student’s impairment that activates disability.

The social model traditionally focused on physical and perceptual impairments and often excluded mental illness (Union of Physically Impaired Against Segregation, 1974, 7). In 2000, Mulvany observed “disability theorists have rarely included psychiatric disability in their work” (584) and this would still seem to be the case fifteen years later. While the understanding of the social model of disability has begun to expand beyond physical and sensory impairments to include other areas, including cognitive impairments such as dyslexia (Macdonald 2009; Riddick, 2001) and learning difficulties (Chappell, Goodley and Lawton, 2001; Goodley, 2010), mental illness still is approached very much from a medical model perspective, with an approach to make a person better, rather than the environment more accessible. This can be seen in the label: Talk of mental illness and mental health invites a medical approach and the idea that a person needs to be healed or made better. This can also be seen in students’ explanations of their mental illness in the interviews:

“I don’t consider that I have a disability. I have a medical condition that requires managing, through lifestyle and medication.”

While the use of the term mental illness in this paper has been adopted to mirror the label given to the impairment by OUA, a more constructive descriptor is needed with useful ideas and alternative labels coming from Madness Studies, Neurodiversity and Neuroqueer (see McWade, Milton and Beresford, 2015).

Mental illness is much like many other impairments, it can come and go and change in severity, and it can develop in a person throughout their lifespan. Also like many other impairments, it is a condition where the disability comes from the construction of society, rather than the individual. Although also like other impairments, the impairment itself has individual consequences (Crow, 1996, 3-4). In this context, medication taken by many people with mental illness to help control their impairment should be seen as more analogous to a wheelchair for a person with a mobility impairment, rather than as a bandage over a wound as it might be more commonly thought of through the prism of the medical model.

Mulvany (2000, 586) notes that “People with mental disorders have been excluded from generic disability programs in areas such as employment and training, housing and accommodation support, generic social support, recreation and disability services.” The medical model approach, coupled with the stigma associated with these conditions can also explain why the prevalence of mental illness in online students is also not widely acknowledged and the information is not openly distributed. The high proportion of students who are studying with mental illness shows the urgent need for these existing prejudices to be overcome, particularly in an educational setting.

Conclusion

The problems that many students with mental illness face when studying on a traditional analogue campus can, to an extent, be alleviated through online study. However there are still a number of barriers to successful participation for these students online. The high proportion of students with this type of impairment represented in the survey indicates that this online mode of study is popular amongst this group and shows the need to both raise awareness, and develop an understanding of the needs of these learners. This form of learning is clearly popular, and OUA seems to be a favored destination for this study, as one student declared when asked if they had any final comments in their interview: “Thank you Open Universities Australia.”

Making access to higher education through eLearning more accessible for students with mental illness, like all design that allows for greater inclusion for people with disabilities, will also make it more accessible for all students. However at this stage there has been limited research into what type of pedagogical design would be a best practice when working with students with mental illness and even less so in an online context. This study has shown that there are three broad areas where reform could make this environment more accessible for these students. The way online technology is used for learning and teaching currently presents a barrier for some students. The pedagogical design of units, particularly around assessment, and the use of group work also need to be closely examined to make it more accessible. Finally, the way that the university is managed and the administrative impact of this on students can currently present significant barriers. It also seems that this group of students has their own ideas about how institutions can be more accommodating to their needs and are eager to share them. These students want to have their voices heard in relation to the accessibility of eLearning. This stands in stark contrast to the invisibility of these students and this impairment category both in broader discussions of disability and also within the student’s own institution. This is a hopeful sign that needs to be embraced, not just by OUA and its partner teaching institutions, but also more broadly across eLearning in higher education.

One of the concerns about people with disabilities and eLearning is that as people with disabilities study online they disappear behind the screen, out of sight of the analogue campus, and as a consequence, issues of inclusion and access lose their potency as this group loses their visibility. Online through OUA we see people with a mental illness have a more serious problem–they have disappeared behind the screen, but even online their presence is masked by both the students themselves and by the institution as they disappear into the “other” category of disability. While this study has focused on students studying through Open Universities Australia, and thus fully online, many of the issues raised here are also pertinent to the growing number of students who are studying some, if not all, of their degree online or though the recently conspicuous Massive Online Open Courses (MOOCs) (Allen and Seaman 2015, 5-6).

The first step to advocate for change is to create a sense of solidarity within a group and to then use these numbers to agitate for change. The invisibility of this group of students makes this task particularly problematic. But the high numbers of these students in this area of higher education demands the attention of those who manage learning technology, teaching, and institutions. If these relatively high numbers of these students involved in eLearning are repeated across the increasing number of higher education courses offered online then this research needs to be seen as a matter of significant priority.

Acknowledgments

The interview phase of this research was conducted with funding from the National Centre for Student Equity in Higher Education https://www.ncsehe.edu.au and the Australian Commonwealth Government. I would also like to thank the editors of this special issue, Sushil Oswal for his valuable work in improving this article through the peer review process, and Andrew Lucchesi for inviting me to submit to this issue and seeing the issue into publication.

Bibliography

Allen, Isabel Elaine and Jeff Seaman. 2015. Grade Level: Tracking Online Education in the United States. Babson Park, Mass: Babson Survey Research Group and Quahog Research Group. http://www.onlinelearningsurvey.com/reports/gradelevel.pdf

Allen, Isabel Elaine and Jeff Seaman. 2014. Grade change tracking online education in the United States. Babson Park, Mass: Babson Survey Research Group and Quahog Research Group.

American Psychiatric Association. 2013. Diagnostic and statistical manual of mental disorders: DSM-5. Washington, D.C.: American Psychiatric Association.

Australian Bureau of Statistics. 2008. National survey of mental health and wellbeing summary of results. ABS Web Site. [Canberra]: Australian Bureau of Statistics.

Bagalman, Erin and Angela Napili. 2013. Prevalence of mental illness in the United States data sources and estimates. [Washington, D.C.]: Congressional Research Service, Library of Congress.

Borland, John and Sue James. 1999. “The Learning Experience of Students with Disabilities in Higher Education. A case study of a UK university”. Disability and Society.14 (1): 85.

Chappell, Anne Louise, Dan Goodley, and Rebecca Lawton. 2001. “Making connections: the relevance of the social model of disability for people with learning difficulties”. British Journal of Learning Disabilities. 29 (2): 45-50.

Case, D. Elizabeth and Roseanna C. Davidson, R. C. 2011. “Accessible online learning”. New Directions for Student Services. 2011. (134): 47–58.

Corrigan, Patrick W. and Deepa Rao. 2012. “On the self-stigma of mental illness: stages, disclosure, and strategies for change”. Canadian Journal of Psychiatry. Revue Canadienne De Psychiatrie. 57 (8): 464-9.

Crow, Liz. 1996. “Including All of Our Lives: Renewing the social model of disability”. In Morris, Jenny. 1996. Encounters with strangers: feminism and disability. [London]: Women’s Press.

Dobransky, Kerry and Eszter Hargittai. 2006. “The disability divide in internet access and use”. Information, Communication & Society. 9 (3): 313-334.

Ellis, Katie. 2011. “Embracing learners with disability: Web 2.0, access and insight”. Telecommunication Journal of Australia. 61 (2).

Ellis, Katie and Mike Kent. 2011. Disability and New Media. [New York and London]: Routledge.

Fichten, Catherine S., Vittoria Ferraro, Jennison V. Asuncion, Caroline Chwojka, Maria Barile, Mai N. Nguyen, Ryan Klomp and Joan Wolforth. 2009. “Disabilities and e-learning problems and solutions: An exploratory study”. Educational Technology and Society. 12 (4): 241-256.

Goodley, Dan A. 2001. “’Learning difficulties’, the social model of disability and impairment: challenging epistemologies”. Disability & Society. 16 (2): 207-231.

Guglielman, Eleonora. 2010. “E-Learning and Disability: Accessibility as a contributor to inclusion”. (Fifth Doctoral Consortium at the European Conference on Technology Enhanced Learning, Barcelona, Spain, 29 September, 31-36). http://ceur-ws.org/Vol-709/paper06.pdf

Holmes, E. Paul, and L. Philip River. 1998. “Individual strategies for coping with the stigma of severe mental illness”. Cognitive and Behavioral Practice. 5 (2): 231-239.

Kelly, Stacy. M. 2009. “Distance learning: How accessible are online educational tools”. (Paper presented at the Equal Access to Software and Information Webinar, February). http://www.afb.org/info/programs-and-services/public-policy-center/education-policy/distance-learning-how-accessible-are-online-educational-tools-4492/1235

Kent, Mike. 2015. “Disability and eLearning: Opportunities and Barriers”. Disability Studies Quarterly, 35 (1). http://dsq-sds.org/article/view/3815/3830

Leaver, Tama. 2014. “Facebook Student Engagement and the “Uni Coffee Shop” Group”. In Mike Kent and Tama Leaver. 2014. An education in Facebook?: higher education and the world’s largest social network. [New York and London]: Routledge, 121-131.

Lee, Barbara A. 2014. “Students with Disabilities: Opportunities and Challenges for Colleges and Universities”. Change: The Magazine of Higher Learning. 46 (1): 40-45.

Macdonald, Stephen J. 2009. “Windows of Reflection: Conceptualizing dyslexia using the social model of disability.” Dyslexia. 15 (4): 347-362.

McLean, Patricia and Jana Andrews. 1999. The learning support needs of students with psychiatric disabilities studying in Australian post-secondary institutions. Leabrook, S. Aust: NCVER.

McWade, Brigit, Damian Milton and Peter Beresford. 2015. “Mad Studies and Neurodiversity: a dialogue”. Disability & Society. 30 (5): 305-309. http://www.tandfonline.com/doi/pdf/10.1080/09687599.2014.1000512

Muilenburg, Lin Y. and Zane L. Berge. 2005. “Student barriers to online learning: A factor analytic study”. Distance Education. 26 (1): 29-48.

Mulvany, Julie. 2000. “Disability, impairment or illness? The relevance of the social model of disability to the study of mental disorder”. Sociology of Health & Illness. 22 (5): 582-601.

Oliver, Michael. 1981. “A New Model of the Social Work Role in Relation to Disability”. (Paper presented at The Handicapped Person: A New Perspective for Social Workers? Conference, Royal National Hospital for Rheumatic Diseases, Bath, 17 September). http://disability-studies.leeds.ac.uk/files/library/Campling-handicppaed.pdf

Riddick, Barbara. 2001. “Dyslexia and inclusion: Time for a social model of disability perspective?” International Studies in Sociology of Education. 11 (3): 223-236

Roberts, Jodi B., Laura A. Crittenden and Jason C. Crittenden. 2011. “Students with disabilities and online learning: A cross-institutional study of perceived satisfaction with accessibility compliance and services”. The Internet and Higher Education. 14 (4): 242-250.

Sachs, Dalia and Naomi Schreuer. 2011. “Inclusion of Students with Disabilities in Higher Education: Performance and Participation in Student Experiences”. Disability Studies Quarterly, 31 (2). http://dsq-sds.org/article/view/1593/1561

Seale, Jane and Martyn Cooper. 2010. “E-learning and accessibility: An exploration of the potential role of generic pedagogical tools”. Computers & Education. 54 (4): 1107-1116.

Sugar, William., Trey Martindale and Frank E. Crawley. 2007. “One Professor’s Face-to-Face Teaching Strategies while Becoming an Online Instructor”. Quarterly Review of Distance Education. 8 (4): 365-385.

Tregaskis, Claire. 2002. “Social Model Theory: the story so far”. Disability and Society. 17 (4): 457-470.

Union of the Physically Impaired Against Segregation (UPIAS). 1974. Policy Statement. http://disability-studies.leeds.ac.uk/files/library/UPIAS-UPIAS.pdf

Van de Bunt-Kokhuis, Sylvia and Mary Bolger. 2009. “Talent competences in the new eLearning generation” elearning papers No 15, June. http://www.elearningeuropa.info/files/media/media19740.pdf

Waits, Tiffany and Laurie Lewis. 2003. Distance education at degree granting post secondary institutions: 2000-2001. Washington, DC.: U.S. Department of Education, National Center for Educational Statistics, NCES 20003-017.

Wentz, Brian., Paul. T. Jaeger and Jonathan Lazar. 2011. “Retrofitting accessibility: The legal inequality of after-the-fact online access for persons with disabilities in the United States”. First Monday. 16 (11).

Appendix A

Question 1 “In what year were you born?”: The average age of the respondents was 42 years, with the oldest 85 and the youngest 15. This compared to the average age of 36 years for all students registered with disability support through OUA.

Question 2 “What is your gender?”: There were 71.4 percent female responses, 27.5 percent male and 1.1 percent preferred not to say. This was broadly in line with the gender ratio for all students registered with disability support through OUA of 70.4 percent to 29.6 percent.

Question 3 ” What is the highest level of school you have completed or the highest degree you have received?”:

Less than high school degree 10.8%
High school degree or equivalent 18.3%
Some college or university but no degree 52.0%
Associate degree 3.1%
Bachelor degree 12.1%
Graduate degree 3.7%

Question 4 “What type of disability or impairment, if any, do you have?”:

Hearing 10.2%
Vision 7.2%
Mental Illness 44.9%
Learning 8.7%
Medical 39.2%
Intellectual 1.8%
Mobility 25.3%
Acquired Brain Impairment 4.5%

There is some variation particularly in the higher representation of vision and mobility impairments when compared to with the overall numbers for all students registered with disability support through OUA listed below:

Hearing 4.8%
Vision 5.3%
Learning 7.5%
Medical 37.3%
Mobility 16.9%
Other 54.2%

 

Question 5 “How long have you been a student through OUA?”:

Less than one year 34.2%
One year 14.4%
Two years 18.9%
Three years 17.2%
Four years 7.1%
Five years 2.8%
Six years 1.4%
Seven years 1.7%
Eight years 0.6%
Nine years 1.1%
Ten years or more 0.6%

Question 6 “What is your chosen field of study?”:

Arts & Humanities 57.4%
Business 13.3%
Education 6.7%
Health 5.5%
IT 6.7%
Law & Justice 11.0%
Science and Engineering 5.5%
Not Specified 1.4%

Question 7 “Are you aware of the type of accommodation that can be offered by the unit providers in relation to your disability/impairment to help with your studies?”:

Yes 28.7%
No 43.9%
Unsure 27.3%

Question 8 “Have you received any accommodation in relation to your disabilities in relation to your study?”:

With all units of study 6.6%
With most units of study 7.5%
With some units of study 16.1%
With no units of study 69.7%

Question 9 “Did you find this accommodation was adequate and appropriate?”:

Yes Always 9.7%
Mostly 10.3%
Sometimes 9.2%
Never 0.9%
Have not received any accommodation 69.9%

alt=’This table lists the different institutions listed in the survey and if students had disclosed that they had a disability to them. There are 4 columns in the table and sixteen rows. The first column lists the institutions from the survey, the second column lists the students who said they had disclosed their disability to this institution (answered “yes” in the survey), and the third column lists those that had not (answered “no” in the survey). The final column lists the percentage of those who had disclosed to a particular institution. The top row of the table labels each of the columns and each subsequent line looks at the data from a specific institutions. The data reads as follows: Curtin University of Technology, yes 100, no 53 percentage yes 65.4 Griffith University, yes 115, no 47, percentage yes 71.0 Macquarie University, yes 77, no 39, percentage yes 66.4 RMIT University, yes 33, no 25, percentage yes 56.9 Swinburne University of Technology, yes 56, no 40, percentage yes 58.3 University of South Australia, yes 51, no 37, percentage yes 58.0 Australian Catholic University, yes 6, no 7, percentage yes 46.2 Charles Darwin University, yes 4, no 11, percentage yes 26.7 La Trobe University, yes 1, no 8, percentage yes 11.1 Learning Network Queensland, yes 3, no 5, percentage yes 37.5 Murdoch University, yes 40, no 25, percentage yes 61.5 Polytechnic West, yes 1, no 5, percentage yes 16.7 The University of New England, yes 3, no 7, percentage yes 30.0 The University of Western Australia, yes 4, no 5, percentage yes 44.4’


Question 11
“When you have not disclosed that you have a disability to an institution what are the factors that caused this?”: 

I did not think it would help 51.8%
I did not know I could 13.1%
I did not know how 13.9%
I did not need any accommodation 26.5%
I did not want any accommodation 9.0%
I did not want to disclose my disability/impairment 17.6%

Question 12 “How do you access the Internet for your studies?”:

Desktop computer 46.2%
Laptop Computer 74.9%
iPad/Tablet 27.3%
Smartphone 23.9%

Question 13 “Have you had any problems accessing online learning platforms due to your disability/impairment?”:

Yes 17.9%
No 82.1%

 

alt=’This table lists the different online platforms listed in the survey and students level of difficulty in accessing them. There are 7 columns in the table and fifteen rows. The first column lists the online platforms that were asked about in the survey. The second column lists how many students had not used the platform, the next four columns list the students who had used the platform and how difficult they found it to access from “no problem” to “minor problems”, “major problems” and “unusable”. The final column lists the percentage students reporting a problem with the platform from the survey. The top row of the table labels each of the columns and each subsequent line looks at the data from a specific online platforms. The data reads as follows: Moodle, not used 99, no problems 26, minor problems 13, major problems 1, unusable 0, percent problems 35.0 Blackboard, not used 17, no problems 68, minor problems 51, major problems 12, unusable 1, percent problems 48.5 Facebook, not used 58, no problems 63, minor problems 13, major problems 3, unusable 1, percent problems 48.5 Twitter, not used 92, no problems 37, minor problems 3, major problems 1, unusable 1, percent problems 11.9 Slideshare, not used 116, no problems 15, minor problems 0, major problems 2, unusable 0, percent problems 11.8 Prezi, not used 110, no problems 20, minor problems 2, major problems 1, unusable 1, percent problems 16.7 Lectopia, not used 105, no problems 18, minor problems 7, major problems 5, unusable 0, percent problems 40.0 Echo 360 / Eco Center, not used 64, no problems 39, minor problems 28, major problems 8, unusable 1, percent problems 48.7 PDFs, not used 22, no problems 81, minor problems 27, major problems 6, unusable 1, percent problems 29.6 Blogger, not used 105, no problems 21, minor problems 6, major problems 1, unusable 0, percent problems 25 WordPress, not used 100, no problems 27, minor problems 4, major problems 1, unusable 0, percent problems 15.6 WebCT, not used 118, no problems 12, minor problems 1, major problems 2, unusable 0, percent problems 20.0 YouTube, not used 37, no problems 78, minor problems 14, major problems 6, unusable 1, percent problems 21.2 University Websites, not used 14, no problems 78, minor problems 42, major problems 17, unusable 1, percent problems 43.5’
Question 15
“Please list any other online platforms that you have had trouble accessing as part of your studies”:

Seventy students responded to this. Twenty indicated that there were no other platforms they had trouble with, and the remaining 50 predominantly took the opportunity to expand on the problems they had with the platforms suggested above, and also highlight problems with inaccessible course material.

Question 16 “Would you recommend Open Universities Australia as a place to study for people with disabilities?”:

Yes 75.9%
No 3.1%
Maybe 21.0%

Question 17 “Would you will be willing to participate in later stages of this research, including online focus groups or interviews? If so please leave your email address. Please note this is not part of the survey and further participation is strictly voluntary (you can also change your mind and decide not to participate further at any point)”:

226 students, 63.4 percent of the people who took the survey, responded to this.

About the Author

Mike Kent is the head of department and a senior lecturer in the Department of Internet Studies at Curtin University. Dr Kent’s main research interests focus on the two main areas of tertiary and online education, as well as people with disabilities and their access to communications technology. He is co-author, with Katie Ellis, of Disability and New Media, (Routledge 2011), and co-editor (with Tama Leaver) of An Education in Facebook? Higher Education and the World’s Largest Social Network (Routledge, 2014). His work has also been published in a number of academic journals including The Journal of Online Learning and Teaching, Digital Culture and Education, Disability Studies Quarterly, Disability and Society, and M/C Media Culture. His current research includes the forthcoming books Massive Open Online Courses and Higher Education: Where to Next? (Ashgate) with Rebecca Bennett and Disability and Social Media: Global Perspectives (Ashgate) with Katie Ellis.

 

"image of three different versions of Line 20 of the "General Prologue" of Geoffrey Chaucer's The Canterbury Tales. The first line reads as it appears in standard printed text. The second line shows the printed text with basic TEI tags. The third example, shown in simulated Braille, shows the same line presented in TEI-encoded uncontracted Braille to illustrate how a combination of TEI tags and Braille can make a material text accessible."
1

Chaucer’s “General Prologue” to The Canterbury Tales as a Case for Accessible Scholarly Editions Using TEI-Encoded Uncontracted Braille

Gia Alexander, Texas Tech University

Abstract

Access to literary materials that meet the rigorous standards of critical editions remains challenging for textual scholars who have print disabilities. Conversely, though, the many assistive technologies available to people with print disabilities prove particularly useful to those in the field of bibliography and textual criticism. The application of these assistive technologies to textual studies could open this discipline to all interested scholars regardless of their ability to examine a document visually, thus moving the field positively in the direction of universal design. This article considers the “General Prologue” to Geoffrey Chaucer’s The Canterbury Tales as a demonstration case for the application of assistive technologies to provide access to scholarly literary materials. More specifically, I propose combining the Text Encoding Initiative (TEI) tagging system with uncontracted Braille to provide full descriptive access to documents and all of their features, even if the scholar cannot visually read a word of text.

“If you were a graduate student, I would insist that you read in Middle English.”

–Assistant Professor of English to a legally blind undergraduate in an upper-level Chaucer course, 1989

Had the professor made the above statement in 1999 instead of 1989, he might have exposed himself and his institution to legal action, media scrutiny and all of the negative repercussions that issue therefrom for violating the Americans with Disabilities Act (ADA). An assistant professor at the time, his chances at tenure may well have been dashed. However, he may have stood in esteem and appreciation among his colleagues for defending the integrity of his field in particular and of scholarship in general. In this case, however, the ADA (United States, “Americans” n. pag.)[1] still lay at least a year in the future, and, no matter, because his student actually agreed with him.

That student was me. The print in my 1987 Riverside Chaucer—the scholarly edition edited by Larry D. Benson, based on the 1957 work of F. N. Robinson, (Benson, title page) that served as the text for the course—was far too small for me to read at adequate pace to keep up with my classmates and the progress of the course. Even with the magnification technology available at the time, which required cutting the textbook apart and putting the individual leaves under a light-and-camera apparatus that projected an enlarged image onto a screen (an early CCTV), my reading pace was simply too slow. Furthermore, due to the thin nature of the printed leaves, the text on the side of the leaf I was not reading showed through under the intense light and occluded the text I was trying to read. With no large print, audio or Braille transcription of Benson’s edition available, and no complete and accessible version of The Canterbury Tales available at all in Middle English at that time, I resorted to the only alternative at hand back then, a multi-cassette audiobook read from a modernized edition whose unremarkable bibliographic pedigree I no longer recall. It was at this mutually disappointing recording that my professor directed his comment.

To explore and demonstrate the still largely unmet need for accessible yet rigorous scholarly literary materials, and to propose some best practices for creating them, I recently developed a very brief sample scholarly edition of the initial 42 lines of Geoffrey Chaucer’s “General Prologue” to The Canterbury Tales. The present essay demonstrates that the tools and techniques used to accommodate those with print disabilities can benefit other scholars as well. The working prototype contained all of the customary components of scholarly editions, including transcription of a copy-text, a note on the text, a stemma relating collated witnesses to the selected copy-text, textual notes that collated two additional print and one Braille witness to the copy-text, an explanation of the treatment of line-end hyphenation, and annotative notes (Modern Language Association Committee on Scholarly Editions, n. pag.). In textual scholarship, a “witness” is a singe document (copy) containing a specific version (edition) of a text to be analyzed and compared against other copies of the same version. I chose to take the copy-text for my sample edition (the main document against which other witnesses are compared) from F. N. Robinson’s 1957 edition of The Works of Geoffrey Chaucer (Rb) because of evidence within or relating to the other three witnesses, and particularly the Braille witness (Wn, Be, Br, United States, “Library” n. pag.), that they were all based on or transcribed from Robinson’s work. One of the primary aims in preparing the sample edition was to investigate the reliability of a Braille witness against its copy-text from the corresponding scholarly edition.

I selected the material for the sample case because I have observed that, even when The Canterbury Tales is taught in high school, teachers often present facsimiles and transcriptions of the “General Prologue” in Middle English to introduce students not only to the linguistic differences between the English of Chaucer’s time and that we speak today, but also to acquaint them with book history and the medieval manuscript tradition. Even for the high school student, large print, audio recordings and some forms of Braille do not adequately transmit the text itself, let alone the bibliographic materiality of that text, such as the layout and placement of line breaks. In the typical secondary and undergraduate classroom, however, a general edition, the trade paperback edition, or the audiobook read therefrom, is too often substituted to accommodate students with print disabilities in many situations, such as when only the basic content is the focus of learning, when students are expected only to know the characters, plot and central theme of a work. For the more advanced student at the upper level, post-secondary level and beyond, however, that materiality becomes an essential dimension to understanding the reception of an author’s work in context and its eventual transmission.

The Quest for a Braille Witness

Despite advances in public policy and technology, accessible scholarly materials remain rare, and obtaining them remains challenging. The ADA and advances in technology have improved access to literary materials, at least in the United States, but not necessarily to scholarly literary materials, or to primary source materials, either in the United States or elsewhere. For example, Chaucer’s work is now available in Middle English in Braille (United States, “Library” n. pag.), but it is in a contracted type of Braille that does not preserve material elements of form that are of interest to textual scholars, which I shall explain in more detail below. Moreover, it took three weeks to locate and acquire the single Braille witness in Middle English of Chaucer’s “General Prologue” to The Canterbury Tales that is the subject of the present work. My institution’s Student Disability Services was not able to locate the copy, though they tried. My state’s Department of Assistive and Rehabilitative Services, Division for Blind Services was not able to help either, though they tried. The state-level accessible library materials division, commonly known as the “Talking Book” program, identified the catalog entry, but did not have access to the actual physical book. Finally, I made contact with an archivist at the Library of Congress who was able to locate and retrieve the witness and have it mailed it to me. And when the Braille copy finally arrived, I discovered that its catalog entry contained a serious error (United States, “Library” n. pag.). The witness is actually transcribed not in uncontracted Braille as per the catalog entry (United States, “Library” n. pag.), but in contracted Braille, the type that does not do a good job of transmitting a document’s material form. Thus, a truly fully accessible, universally designed scholarly edition of Chaucer’s works remains available as the life work of a future textual editor.

After establishing some parameters for accessibility, scholarship, and universal design as they pertain to this work, the present essay discusses in detail potential alternative approaches for accessing text and producing a scholarly apparatus, identifying advantages and disadvantages of the device or technique involved in each approach. In the interest of advancing the field of textual scholarship toward universal design, I also detail the advantages of many alternative techniques and assistive technologies to scholars without disabilities. Indeed, many of the approaches and devices designed to assist people who have low vision can be of very applicable use to all textual scholars and other close readers of literary works. In essence, I explain ways to “reverse engineer” print-disability-related techniques and technologies to promote accessibility across the field of literary scholarship. Ultimately, for accessible literary materials to rise to the standards of scholarship, making them available in TEI-encoded (Text Encoding Initiative) uncontracted Braille stands out as a viable best practice.

Scholarship, Accessibility, and Universal Design in Textual Studies

This section defines the importance of scholarship, emphasizes the need for access to scholarship, and forecasts the goal of universal design in textual studies for the benefit of those readers who may be unfamiliar with this field or with disability studies as a discipline.

The Meaning of Textual Scholarship

The Modern Language Association’s (MLA) Committee on Scholarly Editions (CSE) is the standard-bearer for textual scholarship in English. According to the CSE, for a literary edition to be lauded with the mantle of scholarship, or to be given the designation “Approved Edition,” it must put forth a “reliable text” (n. pag.) that meets the highest standards of “accuracy, adequacy, appropriateness, consistency, and explicitness” (n. pag.). An edition that meets these criteria must have extensive supporting apparatus, such as textual notes and annotations, which must also be accessible to both editor and readers.

The Meaning of Accessibility to a Textual Scholar

Accessibility, to a textual scholar, means bringing together the right set of texts and tools (and workarounds if needed) to be able to analyze and evaluate written, printed, or digital scholarship, and then to produce additional scholarship to standard. Before any textual scholarship can begin, scholars must have access to copy-texts that either already exist in or can be converted to alternative formats. They must then be enabled to transcribe accurately and to validate that transcription with at least three rounds of proofreading (Modern Language Association Committee on Scholarly Editions n. pag.). Based on experience, I recommend at least two additional rounds, followed by a check by a trusted beta-reader, for scholars who cannot quite trust their eyes.

Collation, the careful comparison of a witness against the copy-text to identify variants, presents possibly the greatest challenge to any textual scholar with a print disability. At this stage, a tactile approach such as Braille can be very helpful, as well as audio collation. Finally, the rigorous textual scholar must be able to access and read secondary scholarship, and perhaps related primary sources, to annotate the work thoroughly and accurately. Textual scholars with print disabilities must insist upon, participate in, and help develop adaptive approaches that enable their editions to achieve the highest possible standards of quality so that their work is not dismissed out of hand as having been impossible due to the scholar’s disability.

The Meaning of Universal Design in Textual Scholarship

Universal design seeks to create an environment through which as many otherwise qualified users as possible can engage with the subject matter it encompasses. A universally designed environment does not need additional retrofits to be usable (Hamraie n. pag.). Rather, the accommodating features that remove access barriers are built in. Here, the universally designed environment is a scholarly text. To borrow terminology from the Americans with Disabilities Act, by “otherwise qualified users,” I mean that, in the context of textual scholarship, a user needs to be a the very least a student with appropriate literacy skills (including basic Braille literacy), and at best a textual scholar knowledgeable of the foundational terminology and conventions of the field. The broader application of disability-related technology moves the discipline of textual studies toward the universal design of scholarly texts. Making textual scholars more aware of the available tools and techniques, and incorporating them into the training of the next generation of textual scholars, will promote the field as a barrier-free option of study for all interested students. If everyone uses these tools, they are no longer exclusive to people with disabilities. In the broadest, most philosophical sense, then, a universally designed environment is inclusive.

The Modern Language Association, in its Guidelines for Information Technology Access and Support for the Modern Languages, places universal design under “Responsibilities of Departments and Institutions.” (“Information Technology” n. pag.). The MLA states that departments and institutions must “[s]upport best practices in universal design and accessibility” (“Information Technology” n. pag.). More specifically,

“Technologies that permit persons with disabilities to conduct research, teach, learn, and carry out other professional and educational responsibilities effectively should be made available. Institutions must be aware of and comply with federal regulations regarding accessibility.” (Modern Language Association, “Information Technology” n. pag.)

The idea of universal design transcends traditional disability accommodations in that it seeks to orient material in a presentation mode that requires no additional adaptations for anyone to be able to access it (Williams n. pag.). In other words, documents adherent to principles of universal design should work for all users “right out of the box.”

While it may seem sensible on the surface that those members of the academy who have the most knowledge of literary materials might be able to suggest the best ways to access them, the above directive from the MLA does not explicitly address the need for technical knowledge of alternative formats and assistive technology to know which accommodations to make available. A better approach might be to task departments and institutions to accomplish the above directive by engaging in thorough audience analysis to identify the needs and expectations of all who will use the published documents. Dialogue with a variety of potential users will prove helpful here, as would usability testing of beta materials.

When focusing on proactive accommodations as a step toward achieving universal design, a key point to understanding and providing meaningful access is that there are as many definitions of it as there are people with access needs. Just as everyone’s writing process is a bit different, the access protocols, the “what works,” if you will, is also a bit different for each person who needs to overcome an access barrier. For example, consider two users with low vision. One may have enough residual vision to read standard print with digital magnification. The other may need Braille. It depends on the type and severity of vision loss and on the types of documents to be accessed. Here, consider the hypothetical case of a delicate, rare document from the fourteenth century. Most digital magnifiers use very bright light to help capture the images to be enlarged. Scholars know that they cannot expose such documents to intense light without damaging them. The academy thus needs to develop an alternative means of access to protect both the user’s rights and the documents.

In addition, when we think of accessibility in relation to written, printed, and digitized literary materials, we usually think of accommodating for the visual impairments of students and scholars whose conditions, which are due to some pathology of the visual system, qualify as disabilities under the ADA (United States, “Americans” n. pag.). However, many of the technologies and approaches used to accommodate those whose eye conditions are severe enough to qualify as disabilities can also be of great benefit to sighted, close-reading members of the literary community, and particularly to textual scholars, when their eyes tire, or when, often just as they reach the peak of the profession, their vision begins to deteriorate due to age. Dyslexic scholars may benefit from Braille because it would allow them to bypass the cognitive disconnect between eyes and brain to access text tactilely.

Furthermore, we must consider that not all print disabilities are due to blindness or low vision. Dyslexia, while not technically a disability under the ADA (United States, “Americans” n. pag.) can still disrupt a reader’s experience of a text through the perceived rearrangement of printed characters on a page or screen. For a textual scholar with dyslexia, creating a reliable transcription of a printed copy-text that meets the standards of scholarship (less than one percent error after three rounds of proofreading) (Modern Language Association Committee on Scholarly Editions n. pag.), would be just as out of reach without accessibility or universal design as it would for a scholar who is totally blind.

Because access to textual scholarship is a primary focus of this project, I will now take up a more detailed examination, using the example from Chaucer, of what standards of scholarship must be met, focusing on those criteria that present challenges and opportunities for advances in accessibility. The following sections of this essay describe and evaluate the application of accessibility techniques and assistive technology during the production of my demonstration case for this project, a sample scholarly edition of the “General Prologue” to Chaucer’s The Canterbury Tales. The following descriptions, and all but one of the images, come from my own first-hand experience and original unpublished research.

Alternatives for Accessible Scholarly Materials

Hardware and software tools and techniques, both high-tech and low-tech, now exist to make text accessible. The spectrum of approaches includes simply having text read aloud on the low-tech end to using specialized magnification equipment and accompanying software on the high-tech end. Some more direct approaches are quite workable when textual materiality is not a concern. When it is, modern technology now offers that access, even to a textual scholar who cannot see at all. Even though all of the approaches described in this section are geared toward accommodating scholars who have print disabilities, those whose eyesight has diminished over decades of dedicated close research might also find them useful.

Large Print

For scholars with low vision who have some usable residual sight, large print is by far the first mode of access to handwritten and printed materials. Commercially produced books in large type have been available for decades, but the selection is limited mostly to popular fiction. In the absence of a large-print edition of a needed document, enlarging text from standard print is relatively easy to do by two readily available means. The first approach involves simply making an enlarged photocopy of the required text on a photocopier equipped with this feature. To preserve page layout of originals up to approximate quarto size of 8.5 by 11 inches, make the large print copy on 11 by 17 inch paper at 129 percent enlargement. Alternately, text can be enlarged in blocks at up to 400 percent enlargement on standard letter-sized copy paper, but this process does not preserve layout well without piecing and taping the individual sheets into large and unwieldy poster-sized leaves.

The second approach to producing large-print versions of handwritten or printed material involves digitizing the original by scanning, keying, or, most recently, capturing to a device with enlargement capabilities. Once the text is digitized, it can then be viewed onscreen or printed in large type. These approaches can, with careful attention, preserve textual elements, which can then be explored using screen magnification or, in some instances, a screen reader.

In the latest screen capture technique, I took a picture of a page of the edition from which my copy-text for my sample edition comes (Rb) with my 12.2-inch tablet, which has one of the largest screens on the market (Figure 1a). After I captured the image using my device’s camera, I used the pinch/stretch feature to enlarge it until I could read it comfortably. Furthermore, my particular tablet allows me to write on images with a stylus and save the annotated copy as a new image. In addition to leaving wonderful electronic marginalia “bread crumbs” for future textual scholars to enjoy, this technique allows me to gather my thoughts about and make notes on my research within the enlarged accessible mode (Figure 1b).

Figure 1a: Image shows a black-framed tablet computer. Tablet displays a magnified image of a column of printed text captured from a book.

Figure 1a: Screen capture of standard print to tablet computer

Figure 1b: Image shows the same black-framed tablet computer. Tablet displays text magnified to a greater degree. The text has been annotated by hand using a stylus. A line of magnified text has been underlined and a handwritten marginal note reads “Be sure to include in Note on the text!”

Figure 1b: Enlarged text with on-screen notes saved as new image

What started as an adaptive technique to accommodate my own low vision could prove useful to my sighted colleagues as well in that it eliminates the need to make paper copies during library research, allows for more comfortable reading, and, for collaborative projects such as those in the digital humanities, facilitates research through instant image sharing. Additionally, processing the images through an OCR app can identify the text, and, in some cases, even read it aloud. However, such apps are fraught with the same problems of poor accuracy as computer-based OCR programs.

Magnification Technology

To benefit those who require a bit more text augmentation and perhaps scalability, electronic enlargement of text can be accomplished via non-computerized and computerized methods using specially developed assistive technology. However, it is important to stop and remember here that high-tech is not always the best approach for all users in all cases. In some instances, a magnifying glass or simple pair of reading glasses will do. I have six different pairs of various strengths for brief tasks. For longer close reading, however, I resort to the more robust equipment described below.

            Electronic Magnification

Electronic magnifiers come in hand-held and desktop models. The desktops appeared in the early 1980s, whereas the handhelds have been developed since the advent of the digital camera around the turn of the millennium. Both types of devices use cameras to capture images that are then enlarged onto viewing screens. Older models (Figure 2a) use intense light to illuminate and help capture the image. As noted earlier, rare books cannot go near these machines because of the intensity of the illumination. Newer technology, however, uses a free-arm camera that captures images with ambient light (Figure 2b).

Figure 2a: Image shows a desktop electronic magnifier system. A large computer monitor displays magnified text. An open book rests on a flat surface immediately below the monitor. The book is illuminated under intense white light.

Figure 2a: A traditional desktop electronic magnifier uses light to capture images. A camera apparatus enlarges the images and projects them onto a screen. The book or document must also be in contact with the machine and lie relatively flat. Both conditions risk damaging the book, and are thus abjured by curators.

Figure 2b: Image shows a free-arm magnifier system. A book lays open, resting on angled stands that support the binding. A camera is positioned above the open book. The book is illuminated only by ambient room lighting. A large monitor displays magnified text.

Figure 2b: A free-arm electronic magnifier captures images using ambient light. The book or document can rest on the curatorial apparatus of choice. Accessibility is accomplished without any damaging bright light or equipment touching the document. Camera is top center.

Additionally, these devices, with their adjustable swing-arm cameras and ability to focus even at oblique angles, accommodate larger books that must be supported on foam stands to protect their bindings. A pedagogical advantage of this type of electronic magnifier is its ability to interface with classroom-based audiovisual equipment, including projection to large overhead viewing screens. Instructors and presenters who have visual impairments can now give smooth presentations apace with their sighted colleagues, following along on their own enlarged screens. This approach also works well for those who need to show an object, but who simply have difficulty “explaining over their shoulders,” or who are uncomfortable turning their backs while presenting.

The ultimate advantage of this equipment is its ability to project not only printed materials, but also objects and even live demonstrations. Under the camera, the teacher of book history can, for example, show the structure of a rare binding in great detail, enlarging and reducing the projection as needed. This can reduce unnecessary handling of delicate exemplars by eliminating the need to pass them around a large classroom or conference auditorium. I have also used this equipment in this way to demonstrate how to properly cut and shape a quill so that my audience did not have to crowd around a small work area and crane their necks to see.

When large machines are impractical and reading glasses are inadequate, hand-held digital magnifiers can serve textual scholars as intermediaries (Figure 3). These small, portable devices are quite powerful, and on some models their lights can be deactivated. Their primary advantage to textual scholars is that they provide researchers access to library materials that do not circulate, as is the case with many archival primary source materials, yet they do not have to touch the materials to achieve access. The magnification capabilities of these devices are powerful enough that sighted scholars can use them to examine, and on some models capture still images, of very minute aspects of a non-circulating text, such as a detailed printer’s emblem on a title page. Granted, there are telephone apps that work in a similar manner, but the clarity and magnification is not yet as good as that of a handheld digital magnifier designed for people who are visually impaired.

Figure 3: Image shows a large printed manuscript facsimile lying open. A handheld digital magnifier rests on top of the book, magnifying a single word. The magnifier consists of a rectangular screen approximately the size of a smartphone, with a grey plastic handle and black wrist strap. The handle includes buttons for navigating the device settings.

Figure 3: Handheld digital magnifier used to access a manuscript facsimile.

Another textual studies magnification hack involves pairing a small light table with a desktop electronic magnifier (Figure 4). This combination can allow textual scholars who have some or all of their functional vision to almost quite literally see through paper.

Figure 4: Image shows a free-arm magnifier system. Resting below the magnifier camera is a single sheet of manuscript paper on a lighted panel. The light from the panel has penetrated the paper, allowing the camera to capture the otherwise invisible watermark. The magnified image reveals a large cursive watermark superimposed over the magnified page.

Figure 4: Light table paired with free-arm electronic magnifier to see through paper.

Fibers within paper that can help date a document or identify its place of origin stand out, and undiscernible watermarks come clear. I once delighted one of my paleography professors by enabling the identification of a problematic watermark using my low vision equipment in this way.

Electronic magnifiers paired with light tables, as shown above, can also help textual scholars who have low vision perform collation, with a caveat. For this process to work, the two texts to be compared must be printed with identical font, size and layout. Needless to say, this process only works if the reliability of both texts has been validated with the appropriate number of proofing iterations. It essentially involves multiple transcriptions, not only of the original or copy-text, but also of the witness to be collated. This process is quite useful, however, in comparing two versions of the same document, such as a typed letter, to identify emendations.

            On-Screen Computer Magnification

Scholars who have low vision can also access digitized text via computer screen enlargement. The level of sophistication of the technology depends on the level of usable remaining vision. For those with relatively good residual vision, such as people with a visual acuity near the borderline for statutory blindness in the United States, simply reducing the computer’s screen resolution may help. On computers running the Windows operating system, holding down the CTRL key while scrolling the mouse wheel may provide the next best degree of scalable magnification in some applications.

Beyond that, specialized magnification software, such as Windows Magnifier, now standard on Windows 7 and above, provides greater incremental screen enlargement with a few keystrokes. These light-duty, built-in screen magnifiers work well for performing brief tasks with low vision, such as checking a reference, or for sighted scholars whose eyes have grown tired. A quick click of the X returns the user to the original layout and presentation of the text.

The most sophisticated screen magnifiers are those developed specifically for people with low vision. These applications provide intense enlargement, as well as other features to help make text more readable, such as different settings for background and font colors. These environments, however, distort the materiality of the text and thus distance the reader from it.

Of course, the primary disadvantage of electronic magnification is that it still does not provide textual accessibility to those who do not have enough residual vision to use them, or to those with cognitive print disabilities where the enlarged image on the screen would be just as distorted. Those scholars may find the audio and tactile alternatives discussed in the following subsections helpful.

Audio Recording / Screen Reader

Audio recordings, by their nature, fall short of the standards of textual scholarship because they do not preserve the materiality, and often fail to include the entirety, of the text. By this I mean that audiobooks, even those produced specifically for college students who have print disabilities, often omit critical elements of content or apparatus, such as textual notes and annotations. They are usually read from standard editions of works at best, and flawed ones at worst. Because of the sheer length of most scholarly editions, and the time it would take to read them aloud into a recording, rendering them in audio is problematic. While some services will do this, the readers are not trained to describe material features of the edition being read that might be of interest to textual scholars. Traditional audiobooks can, however, be useful in the general sense of becoming familiar with a previously unexplored text or the style of an author one has never read before. A quick listen during a commute or plane trip, for example, might give a textual scholar a point of orientation and some ideas of what to expect from the more rigorous material to come.

However, if a researcher can obtain an electronic version of a text that both meets the standards of scholarship and contains the requisite formatting to make it screen readable, computerized screen readers can be very helpful in that they will read that text aloud. A primary drawback to this approach is that too often electronic texts are not universally designed and are not screen readable (Oswal n. pag.). The more sophisticated programs, however, allow the user to choose a level of reading granularity from continuous reading all the way down to character by character; the latter feature is of particular use to the textual editor. Scholars who find collating problematic because they have difficulty managing two images visually can also make great use of this feature by listening, again, character by character, to one witness while following along with another by eye, under an electronic magnifier or in Braille. Sighted scholars who do not have access to low-vision technology can take advantage of this technique by first reading, once again, character by character, their copy-text into a recording and then following the playback with the witness being collated, marking variants as they become evident.

In the case of primary works, reputably curated digital humanities archives, such as the William Blake Archive and Jerome McGann’s Rosetti Archive, may be another source of reliable electronic texts. Large digital corpora, such as broad, uncategorized collections of novels compiled for long-term storage or data-mining, are not good sources because they are too often populated via unreliable OCR scanning techniques.

Live Reader

A live reader, particularly from one’s own discipline, such as a student’s classmate or a faculty member’s graduate assistant, can be a very valuable asset to a textual scholar with a print disability. These readers will understand the fundamentals and structure of what they are reading. The listener can stop the reader, ask for cross-reference (“look that up in the annotative notes, please”), ask that a page number be taken note of, etc. However, paid readers can be very expensive, especially when they are not fellow students or researchers on the same project who have to read the same material anyway. In the case of generalist readers unfamiliar with the listener’s work, their services, even with the best of intentions, can be as problematic as a non-scholarly audiobook. The same problem occurs with image description services. For example, the textual scholar’s fleuron (printer’s emblem) beneath a colophon (information about the printer and/or publisher) becomes the generalist’s flower on the bottom of the title page. In dealing with works that have linguistic characteristics that vary from the norm, a generalist reader may be totally lost, and his or her own accent, if one is present, can further complicate textual transmission. After all, in the case of Chaucer, even some scholars of Middle English find reading it aloud difficult.

Throughout this essay, I have criticized the shortcomings of using audio versions of texts in scholarly work, even when read live from reputable editions, because they do not preserve and transmit textual materiality. A textual scholar cannot discern, for example, spelling, hyphenation, line breaks, punctuation, paragraph/stanza breaks, broken characters, differences in typeface, changes in type size, irregular spacing, or any other materiality from audio. Large print and magnified text can, if done correctly, transmit textual materiality, but even this is useless to the scholar who has very little or no functional vision. Yet, there remains a solution that can preserve and transmit a text, its materiality, and the human experience of interacting physically with a document to those who are not able to read it with their eyes.

Braille

Braille is a coding system of patterns of raised dots arranged in clusters of six, called cells, which represent letters, words, parts of words and even some short phrases. This tactile writing system allows people who are blind or who have low vision to read text with their fingertips. Figures 5a and 5b below show the Braille cell and the Braille alphabet in English.

Figure 5a: Image shows diagram of Braille cell structure. Cell sections are numbered 1 to 6.

Figure 5a: The structure of the Braille cell. Note that the dots are numbered to help users learn the various letter forms, word signs, and punctuation marks.

Figure 5b: Image shows full Braille English alphabet arranged in three rows.

Figure 5b: The Braille alphabet in English.

Uncontracted Braille uses a different symbol for each letter of an alphabet and for common punctuation marks in a given language. In scholarly textual terms, it is diplomatic in its approach to transcription, meaning that each and every character is transcribed as it appears in the original or copy-text. Contracted Braille, today known as Unified English Braille (UEB), by contrast, applies a form of shorthand abbreviations using the single-cell alphanumeric characters and a few two-cell and three-cell combinations to stand for parts of words, entire words, and a few phrases. While contracted Braille may be more efficient, the contractions cause confusion in literary and textual scholarship where contracted word forms appear, such as those used in expressing dialect in dialogue, something Chaucer is known for doing well. Hence, rigorous textual scholarship will need to highlight these features. Scribal emendations and marginal notes, also often truncated and/or abbreviated, are other instances where their contracted forms can conflict with the notation conventions of contracted Braille.

To review, in preparing this edition, I collated three witnesses of the first 42 lines of Chaucer’s “General Prologue” to The Canterbury Tales, including one Braille witness, against copy-text from F. N. Robinson’s 1957 edition of The Works of Geoffrey Chaucer (Rb). All witnesses, including the Braille one, claim derivation from Rb (Wn, Be, Br, United States, “Library” n. pag). My specific aim here was to evaluate the quality and reliability of the Braille witness as an exemplar of accessible scholarly literary material as part of my larger argument on accessibility and scholarship.

As expected, the most variants occurred with the hand-transcribed Braille witness; however, these are largely transcriptive variants undertaken by the Braille transcriber (unknown individual) (United States, “Library” n. pag.) due to the rules of transcribing contracted Braille (American Printing House for the Blind n. pag.). According to the technical conventions of scholarly editing, these variants are not errors (accidentals), and they do not alter the meaning of the text (substantives) (Greg 21). I collate them because they do alter the presentation of the materiality of the text, which is an important matter of substance to textual scholars.

Because of the size of the transcribed Braille symbols (correlating to approximately 18-20 point typeface size in print), Braille documents are very bulky. A complete King James Braille bible, for example, comes in 16 large binders and requires six linear feet of shelf space, even when printed in contracted Braille on both sides of the paper (interpoint Braille) (Braille Bibles International). Although uncontracted Braille reproduces each and every character from the printed page, including spaces, exactly, it does not preserve line length or line breaks because only about 28-35 characters and spaces can fit on one line of standard Braille, depending on the size of paper used for the transcription. The contracted form of Braille is coded by using a single symbol or small group of symbols to represent commonly used longer words and parts of words, such as “-ing,” “-tion” and “-er-.” For example, in contracted Braille, the letter “k” on its own (⠅ in contracted Braille) stands in place of the word “knowledge” (⠅⠝⠕⠺⠇⠑⠙⠛⠑ in uncontracted Braille) (American Printing House for the Blind 1). The contracted method helps save space and increase reading speed. The Braille Authority of North America defines these short forms and other notation conventions of contracted Braille. To add even more confusion to this mix, traditional contracted Braille notation is currently being retooled to conform to the new Unified English Braille standards. While experienced users of contracted Braille might transition easily to the new system, the changes in notation will further compound difficulties in the textual study of existing documents in traditionally contracted Braille.

The following example illustrates the confusing conflict between contracted Braille and textual/scribal notation. In contracted Braille, it is customary to omit the space between some of the more common prepositions and the words that follow them (Duxbury Systems, Inc. 1). For example, in Line 2 of the printed “General Prologue” from Rb which reads, “The droghte of March hath perced to the roote,” the words “to the” in print become “tothe” in the contracted Braille witness, with the symbol for the word “to” and that for the word “the” adjacent to each other with no space (⠖⠵ in contracted Braille). While this convention does not result in substantive variants or errors per se, it does create variants of form. These can be problematic when the Braille reader does not know and cannot tell whether the original copy-text retained the space or not.

This convention of abbreviating and condensing in contracted Braille can be especially problematic to the editor tasked with production of an accessible edition, as well as the scholar reading it, when abbreviations appear in the copy-text itself, be it printed or handwritten. Scribes in the manuscript era often made abbreviations of common words for the same space-saving reasons that Braille transcribers do today. For example, an examination of Line 1 of the “General Prologue,” “Whan that Aprill with his shoures soote,” in the facsimile edition of the Hengwrt Manuscript reveals a scribal abbreviation of the word “with” as “wt” (Ruggiers 3). In the present edition’s printed copy-text from Rb, “with” is spelled out, having been normalized by editor F. N. Robinson and clarified as such in his note on the text (xxxix). A Braille transcriber of the original Hg or a facsimile working in contracted Braille, however, would still use the abbreviation for the word “with,” which is represented as “⠾” in contracted Braille, even for the scribal abbreviation. Granted, the conscientious, or scholarly, transcriber could make a footnote explaining this emendation. In uncontracted Braille, however, with its strictly diplomatic approach to transcription, the original form of the scribal abbreviation (⠺⠰⠞ in uncontracted Braille, with the center symbol composed of dots 5 and 6 indicating that the next character is a superscript, a form marker in either version of Braille) is clear, as is the whole word spelled out (⠺⠊⠞⠓ in uncontracted Braille).

Textual scholars can also use Braille to collate witnesses by printing both documents in Braille and then reading “two-handed;” that is, the left forefinger follows the copy-text and the right forefinger follows the witness. This approach is the tactile equivalent of using a mechanical collator, a device that uses mirrors to help editors spot textual variants by eye, in that the brain alerts when it perceives different symbols. From this discussion, we can take one step in favor of uncontracted Braille as a means of access for textual scholars who have print disabilities. Before identifying it definitively as a best practice, however, we must consider electronic Braille output.

.BRF File with Refreshable Braille Display (RBD)

Today, tactile digital access to Braille comes in the form of a device called a refreshable Braille display (Figure 6). This device plugs into a computer or mobile device via a USB port. Proprietary software then “reads” text from the computer’s video output and transfers it to the refreshable Braille display one line at a time. Pins move up and down in the display to create the raised dot patterns of the Braille code (American Foundation for the Blind n. pag.). While providing Braille access to digital media, these devices are both complicated and costly. They are delicate, break down easily, and cost a great deal of time and money to repair. Still, they can provide quick access to electronic materials encoded in a way these displays can read. Such encoding is known as a .BRF file, or Braille Readable File (American Foundation for the Blind n. pag.).

Figure 6: Image shows diagram of a Refreshable Braille Display system. A laptop computer uses a USB cable to connect to the Braille Display device, which is sitting a few inches in front of the laptop. The device is a raised grey strip slightly wider than the laptop keyboard. Across the center of the device is a panel with refreshable Braille cells. At the front corners are buttons labeled “Refresh button” and “Power button.”

Figure 6: Refreshable Braille Display.

These files, however, are almost always coded for contracted Braille and are not portable to a standard Braille computer printer. However, these devices can still prove useful to blind textual scholars whenever they can be set to display uncontracted Braille, and files so coded are available for use with RBDs.

The primary limitation of uncontracted Braille of any output in the context of textual scholarship is that it does not on its own capture textual features of print such as broken characters, color, or images. However, with a little help from another tagging system, this limitation can be overcome as well.

TEI-Encoded Uncontracted Braille

Today, literary texts that meet the MLA standards of scholarship can be made fully accessible to scholars with print disabilities, even if they cannot read a single line of print by eye. By combining Extensible Markup Language (XML) guidelines from the Text Encoding Initiative (TEI) and uncontracted Braille, we can now produce accessible scholarly editions that not only transmit the text reliably, but also allow the reader to experience the “visual” and material form of that text.

            What Is TEI?

The Text Encoding Initiative (TEI) is another standard-bearer in textual scholarship. According to its web site, the TEI is

“[a] consortium which collectively develops and maintains a standard for the representation of texts in digital form. Its chief deliverable is a set of Guidelines which specify encoding methods for machine-readable texts, chiefly in the humanities, social sciences and linguistics.” (Text Encoding Initiative n. pag.).

The acronym TEI stands for the organization as well as the XML encoding guidelines (Text Encoding Initiative n. pag.). TEI is a discipline-specific markup language that interacts with the more general Extensible Markup Language (XML) to encode not only text, but very specifically how that text appears on the page or screen (Text Encoding Initiative n. pag.). As a simple example, the tags most relevant to the present scholarly edition prototype are the line markers, encoded <l>line of text</l> in TEI, which indicates line breaks.

            Incorporating TEI and Uncontracted Braille

As established earlier, Braille, even uncontracted Braille, on its own does not adequately preserve and transmit textual materiality to the level of detail necessary to meet MLA standards of scholarship. For example, in the case of the “General Prologue,” line breaks are not diplomatically preserved even in the contracted Braille witness because the larger size of the Braille type does not allow the lines to fit exactly as they do on the printed page. However, if we incorporate the TEI code for a line break into the uncontracted Braille file, the reader can then literally feel where the line actually breaks in the printed text! This allows the scholar an accurate perception of line and meter, and, if the line number is also encoded, the scholar can then cite the line appropriately in apparatus or criticism. Consider the following example of Line 20 of Chaucer’s “General Prologue,” first in print, then in TEI-encoded print, and then in simulated TEI-encoded Braille.

"image of three different versions of Line 20 of the "General Prologue" of Geoffrey Chaucer's The Canterbury Tales. The first line reads as it appears in standard printed text. The second line shows the printed text with basic TEI tags. The third example, shown in simulated Braille, shows the same line presented in TEI-encoded uncontracted Braille to illustrate how a combination of TEI tags and Braille can make a material text accessible."

 

In the third part of the above example, the Braille reader can discern that this is Line 20, where it starts and stops, that “Southwerk” and “Tabard” are place names (likely glossed in the annotations), and that the period spelling of “Southwerk” in retained and not modernized to “Southwark.” And it gets better! TEI includes thousands of codes covering almost every imaginable textual detail including color, whether a piece of text is actually a note in the margin (marginalia), whether it was inserted by someone else, typed or by hand, in ink or in pen—sometimes, even types of pens can be identified and encoded. If detailed descriptions of images are available, they too can be included with TEI. This TEI/Braille hybrid code can now be output to a Braille computer printer/embosser or to a Refreshable Braille Display that supports uncontracted Braille. Therefore, any scholarly literary text that has been encoded with TEI stands at the ready for Braille conversion; all we have to do is make the code files available. In the case of Chaucer, several parts of The Canterbury Tales have been coded in TEI and digitized as digital humanities critical editions, such as “The Wife of Bath’s Prologue” (Robinson, Peter 74-92).

Although TEI does not have to be modified in any way to accommodate the Braille code, some adjustments would be helpful to the Braille reader. For example, some TEI coders group as many codes as possible along the left margin. In the above example, then, the line break code for the previous line (</l>) and the code indicating a new line (<l n=”20″>) would appear together as follows:

</l> <l n=”20″>In <placeName>Southwerk</placeName> at the <placeName>Tabard</placeName> as I lay

Placing the line break codes at the ends of lines gives Braille readers a better spatial orientation of where the lines break and how long they are.

Obtaining and configuring the right equipment to produce TEI-encoded uncontracted Braille remains as a challenge for future work. While some RBDs can be set to display uncontracted Braille, an argument for embossed (computer printed) Braille on paper is that it preserves yet another material aspect of interacting with text.

TEI-encoded uncontracted Braille will provide unprecedented access to textual scholarship. However, there is a bit of a learning curve; users must know at least enough TEI to recognize the descriptors within the documents, and they must know uncontracted Braille. Most textual scholars, however, will know fundamental TEI, so learning the 35 or so symbols of uncontracted Braille should be only little more code to them. From the other end of the access continuum, students with very low or no vision who want to study textual scholarship will likely already know the Braille alphabet, as it is taught in blindness skills training. These users will need to learn some TEI, and perhaps a few markup symbols such as superscript, subscript, and, of course, the angle bracket. Finally, senior scholars may want to pick up the Braille skills to help preserve their vision, or to continue working when it inevitably starts to fail. Thus, the field of textual studies no longer needs to endure the loss of an eminent scholar due to failing eyesight.

Conclusions and Future Work

“Accessibility” and “scholarship” are two words that definitely belong in the same sentence in the context of literary and textual studies. With advanced technologies and novel techniques, such as TEI-encoded uncontracted Braille, no scholar who has a print disability but enjoys literature should ever again have to settle for a substandard text in an unsuitable format.

The task remains ahead to identify the best hardware and software for producing accessible TEI-encoded uncontracted Braille documents. Efforts to encode scholarship reliably into TEI must remain ongoing so that quality encoded files are available. Nonetheless, this is doable, and doing it will allow the often “neglected” field of textual studies to gain significant interdisciplinary currency and validation by providing such ready solutions for the accessibility of text across the curriculum (Reiman xiv).

Finally, textual scholarship has the potential to become a discipline committed to universal design by incorporating technologies and techniques such as those described in this essay. Such efforts could help expand a niche field that will only become more relevant, as Jerome McGann put it in a recent interview, as we reinvent our cultural heritage for the digital age.

Acknowledgments

Thanks go first and foremost to Dr. Ann R. Hawkins of Texas Tech University, for her professional guidance through the development of this project, and for holding me firmly to the level of scholarly detail the discipline of textual studies requires. Thanks as well to Andrew Lucchesi for spearheading this special issue, and for his tireless work alongside Laura Kane to make it accessible through both displayed text and image descriptions. I also thank Dr. Sushil Oswal for his thoughtful and detailed review and feedback. This work was partially funded through a tuition waiver granted under Section 91.051(5) of the Texas Human Resources Code, and supported by grants of equipment and technology from the Texas Department of Assistive and Rehabilitative Services, Division for Blind Services. Finally, my sincere gratitude goes to the archivist at National Library Service, Section for the Blind and Physically Handicapped (SBPH) at the Library of Congress who located the Braille witness.

Bibliography

American Foundation for the Blind. “Refreshable Braille Display.” Web. n.p. 6 April 2014.

American Printing House for the Blind. Braille Series 1992 (In Three Books): Book Two: Beginning Contracted Braille. Louisville: American Printing House for the Blind, 1992. Braille.

Benson, Larry D., Ed. The Works of Geoffrey Chaucer. By Geoffrey Chaucer. New York: Houghton-Mifflin, 1987. Print.

Braille Bibles International. “New King James Bible.” Web. n.p. 28 Mar. 2014.

Crow, Martin M., and Virginia E. Leland. “Chaucer’s Life.” In The Works of Geoffrey Chaucer. By Geoffrey Chaucer. Ed. Larry D. Benson. New York: Houghton-Mifflin, 1987. Print.

Chaucer, Geoffrey. “General Prologue to The Canterbury Tales.The Works of Geoffrey Chaucer. Ed. F. N. Robinson. 1957. Washington, DC: National Library Service, Section for the Blind and Physically Handicapped (NLS-SBPH), BRF01733, n.d. Hand-copied contracted Braille. Cited as Br.

—. “General Prologue to The Canterbury Tales.” The Works of Geoffrey Chaucer. Ed. Larry D. Benson. New York: Houghton-Mifflin, 1987. Print. Cited as Be.

—. “General Prologue to The Canterbury Tales.” The Works of Geoffrey Chaucer. Ed. F. N. Robinson. 2nd ed. Boston: Houghton-Mifflin, 1957. Print. Cited as Rb.

—. The General Prologue to The Canterbury Tales. Ed. James Winny. Cambridge: Cambridge UP, 1965. Print. Cited as Wn.

Doyle, A. I. and M. B. Parkes. “Paleographical Introduction.” In A Variorum Edition of the Works of Geoffrey Chaucer. Vol. 1. Ed. Paul Ruggiers. Norman: U of Oklahoma P, 1979. xix-xlix. Print.

Duxbury Systems, Inc. Braille Transcription Tables. PDF.

Greg, W. W. “The Rationale of Copy-Text.” Studies in Bibliography 3 (1950-51): 19-37. PDF.

Hamraie, Aimi. “Collective Access: A Feminist Disability Theory of Universal Design.” Disability Studies Quarterly 33.4, 2013. Web. Date you accessed the material.

Manly, John M. and Edith Rickert. The Text of The Canterbury Tales: Studied on the Basis of All Known Manuscripts. 9 vols. Chicago: U of Chicago P, 1940. Print.

McGann, Jerome. Interview by Thomas Hill. The Library Café. 8 Apr. 2015. Web. 8 May 2015.

Modern Language Association. Guidelines for Information Technology Access and Support for the Modern Languages. “Responsibilities of Departments and Institutions.” MLA, 2013. Web. 25 Apr. 2015.

Modern Language Association Committee on Scholarly Editions. Guidelines for Editors of Scholarly Editions. 29 Jun. 2011. Web. 25 Apr. 2015.

Oswal, Sushil. “Multimodality in Motion.” Disability and Kairotic Spaces. Web. 31 Aug. 2015.

Reiman, Donald H. Foreword. Textual Editing and Criticism: An Introduction. Ed. Erick Kelemen. New York: Norton, 2009. Print.

Robinson, F. N. “The Text.” The Works of Geoffrey Chaucer. By Geoffrey Chaucer. Ed. F. N. Robinson. 2nd ed. Boston: Houghton-Mifflin, 1957. Print.

Robinson, Peter. ”The Canterbury Tales” and Other Medieval Texts.” Electronic Textual Editing. Eds. John Unsworth, Lou Burnard, and Katherine O’Brien O’Keefe. New York: Modern Language Association of America, 2006. 74-92. Bookshare Accessible Reader.

Taylor, Joseph. “Chaucer’s Uncanny Regionalism: Rereading the North in ‘The Reeve’s Tale.’” The Journal of English and Germanic Philology 109.4, 2010: 468-489. PDF.

Text Encoding Initiative. P5: Guidelines for Electronic Text Encoding and Interchange. 6 Apr. 2015. Web. 26 Apr. 2015.

United States. Americans with Disabilities Act of 1990. Pub. L. 101-336. 26 July 1990. 104 Stat. 328. Web. Date you accessed the material.

—. Library of Congress. National Library Service. Section for the Blind and Physically Handicapped (NLS-SPBH). NLS Voyager Catalog Entry for BRF01733. The Works of Geoffrey Chaucer: General Prologue Washington, DC: GPO. 3 Mar. 2015 . Web. Date you accessed the material.

Williams, George H. “Disability, Universal Design, and the Digital Humanities.” Debates in Digital Humanities. 2012. Web. 25 Apr. 2015.

[1] This article’s documentation style adheres to the Modern Language Association (MLA) guidelines to accommodate specialized textual studies notation.

About the Author

Gia Alexander is a graduate student in Book History and Digital Humanities at Texas Tech University. She currently works as a technical writer, editor and teacher in the Harold Vance Department of Petroleum Engineering at Texas A&M University. She earned a Master of Arts in English from Texas A&M University, and a Bachelor of Arts in English from Northwestern State University of Louisiana. Her research interests include book history, textual studies, digital humanities, technical communication and journal writing.

This is a birds-eye-view of a city with buildings, roads, and trees.
1

#OpenAPS, Nightscout, and User-Driven Design for Type 1 Diabetes Technology

Krista A. Murchison, University of Ottawa

Abstract

While many have argued that disabled users should be more involved in the design of assistive technology, these users continue to have limited influence over such design. As a consequence, assistive devices are generally designed in response to those needs defined by medical practitioners, industry experts, and governmental agencies, and do not always take into account the priorities of individuals with impairments. In recent years, however, care for type 1 diabetes has been revolutionized by user-driven innovations. Two such innovations are the #OpenAPS project, which aims at building an open-source artificial pancreas, and the related Nightscout project, which enables those with type 1 diabetes to transmit blood glucose data remotely. In this article, I examine these innovations as case studies for user-driven participatory design, weighing its various benefits. I then highlight the ways in which this approach to design transforms traditional models of medical research, and propose ways of addressing educational barriers to this kind of design.

Introduction

Stuart Blume (2012) recently observed that although those working in the field of science and technology studies have for many years stressed the importance of involving the users of technology in its design (Oudshoorn and Pinch 2003), users continue to have little influence over the development of accommodation technology (Blume 2012, 350). In general, medical practitioners, industry experts, and governmental agencies continue to dictate the goals for the design of assistive technology, and these may not be in line with the needs of users (ibid.).

Irving Kenneth Zola (1977), among others, has pointed out that, traditionally, medical and governmental groups have approached impairment as a problem that must be solved. Assistive technology developed under the traditional model is primarily aimed at correcting an impairment (Johnson and Moxon 1998, 243). This approach can be problematic, as it sends a message that disabled bodies are wrong and promotes the normalisation of certain bodies. In addition to the problem of normalisation, the traditional medical approach to assistive technology creates a divide between the user and the designer-as-expert. This can leave the user with a sense of being dependent on the designer or device (Zola 1982; Johnson and Moxon 2010, 246).

In recent years, scholars have identified another significant limitation with the medical approach. In its focus on solving impairment, the medical approach does not address the concerns and interests of users that go beyond functionality—what Blume has termed “those elements of experience that lie beyond the compass of medical practice” (Blume 2012, 356). Key among these are the aesthetic aspects of an assistive device. Graham Pullin explains that bodies are not just functional, they can be used to negotiate a place within culture and shape self-image (2009, 40). For example, Pullin writes that “any hand is more than a tool—it becomes part of a wearer’s body image, a visual as well as functional termination of the arm” (ibid.). Pullin argues convincingly that, given the importance of these visual and cultural aspects of assistive technology, designs that focus exclusively on function are of limited success.

Participatory design, which involves the disabled individual at every stage of the design process, has been forwarded as a preferable alternative to traditional models of design for disability. Through its emphasis on user involvement, participatory design promotes technology that is responsive to the actual needs of users, as opposed to those determined exclusively by the medical industry. Of course, not all users will be able to participate in the design process to the same degree or in the same way, and scholars of participatory design stress the importance of taking these differences into account (Newell et al. 2010, 235; Oswal 2014, 14). We are currently in need of more models of design that allow users to contribute to the design process and to determine their roles in this process.

The past decade has witnessed the emergence of new opportunities for users to dictate their roles in the design of assistive technology. Particularly relevant here is the increasing accessibility of design tools, such as programming and 3D printing (Rao 2012; Sharma 2013). As the tools of technological development become more accessible, a greater number of disabled users will be able to develop and modify technology at some remove from medical and industry experts. Already, some hearing aid manufacturers are using 3D printing as a means of creating devices to meet the needs of individuals’ unique bodies (Sharma 2013), and it is not hard to imagine a future in which someone who wears one of these devices will be able to design it independently.

It is worth keeping in mind that not everyone wants to be involved in the design of assistive technology. But these technological innovations are nevertheless valuable because, by potentially reducing the need for other designers, they can give users a greater say both in the development of assistive technology, and, through this, in the role they wish to play in this process. Yet, as discussed below, not all disabled individuals can use these new design tools, and in order for these tools to support participatory design, we must strive to remove existing barriers to learning these technologies.

In this article I will explore both the benefits and the challenges of user-driven participatory design, specifically by considering recent examples of it within the context of type 1 diabetes care. I begin with an overview of type 1 diabetes in order to establish the reasons why technology is often used in managing the disease. After then describing existing technology for regulating glucose levels, I examine two projects, #OpenAPS and Nightscout, that illustrate various aspects of user-driven participatory design and innovation. Finally, I draw on these two case studies to suggest ways that designers and agencies can lower the barriers to community access and increase user involvement in all stages of design.

Yet, while these case studies contain valuable lessons for future approaches to assistive technology, it is important to stress that these are just two among many potential models. Just as a one-size-fits-all approach to assistive devices must be discarded, so, too, must be a one-size-fits-all approach to the development of these devices.

Type 1 Diabetes: “A Data-Intensive Disease”

Type 1 diabetes presents itself when the body’s immune system begins to attack the pancreatic cells that are responsible for producing insulin. There is currently no known way of preventing this attack, or of halting pancreatic damage once it begins to occur (Couzin-Frankel 2011, 819). In most individuals, the pancreas maintains a longevity-promoting equilibrium of glucose in the blood by releasing insulin in response to fluctuations in glucose levels. But for those with type 1 diabetes, the pancreas does not produce this insulin. To achieve homeostasis, those with type 1 diabetes must monitor their glucose levels through multiple daily blood tests and the administration of exogenous insulin. Achieving optimal blood glucose levels for long-term health is a delicate balance. Levels that are too high can lead to significant long-term complications, including neuropathy and cardiovascular disease (Atkinson, Eisenbarth, and Michels 2014, 74), while levels that are too low can quickly turn fatal (Seaquist et al. 2013, 1386).

Since the discovery of insulin in the 1920s, it has been possible for a person with type 1 diabetes to regulate his or her blood glucose levels, but available management techniques have severe limitations (Atkinson, Eisenbarth, and Michels 2014, 72-73). For most individuals, the pancreas releases insulin based on fluctuations caused by food, exercise, and other factors, but a person with type 1 must make these adjustments using limited information and blunt tools. For many people with type 1, this means multiple daily finger blood tests to determine glucose levels, and multiple daily injections in response to these levels and other factors (Atkinson, Eisenbarth, and Michels 2014, 74). It is these constant measurements and adjustments that led one journalist to describe diabetes as a “data-intensive disease” (Swanson 2015).

Over the past thirty years, technological advancement has led to new options in terms of both insulin delivery and glucose testing. Insulin pumps offer the option of ongoing insulin delivery, and continuous glucose monitoring devices (CGMs) give their users access to real-time data on blood glucose levels. The former have, according to trials, enabled better management of the disease (Atkinson, Eisenbarth, and Michels 2014, 74). The latter have given those with type 1 unprecedented insight into glucose levels.

However, the strategies for diabetes management enabled by these two developments are expensive, and their efficacy is limited. Many people with diabetes are prevented from accessing these devices by geographical and financial barriers (Clarke and Foster 2012, 91). Indeed, in many parts of the world, access to insulin itself is limited, rendering pumps and other assistive technology widely inaccessible (Gale 2006, 11). Moreover, although some glucose monitors have been created for those with visual impairments (Clarke and Foster 2012, 90), insulin pumps and CGMs continue to present accessibility problems to people with these and other impairments. Those who can access these devices can continue to face challenges with their diabetes management; typically, a person wearing both a CGM device and an insulin pump must mediate between the two, making manual insulin adjustments based on fluctuations in blood sugar. Children and others who cannot monitor their blood sugar levels and make these adjustments must rely on caregivers to monitor them directly, and this can limit independence.

Remarkably, technology has developed to the point that it is possible to produce a closed-loop pancreas system, which uses computer algorithms to make precise adjustments to insulin levels in response to blood sugar fluctuations (Atkinson, Eisenbarth, and Michels 2014, 74). To promote longevity, the system would make these adjustments continuously and automatically based on real-time blood glucose readings from a CGM. Eventually, these devices could incorporate heart rate monitors, sleep monitors, accelerometers and other devices, leading to even more refined control.

In recent years, medical researchers have taken steps toward this goal of an artificial pancreas. A pump that suspends insulin delivery in response to glucose levels is already on the market. Researchers have been testing prototypes for a fully-integrated artificial pancreas with significant success (Breton et al. 2012, 2236; Haidar et al. 2014). The JDRF, a charity aimed at reducing the impact of type 1 diabetes, describes the artificial pancreas as “the most revolutionary development in diabetes care since the discovery of insulin” (JDRF 2015). However, even the most optimistic estimates acknowledge that it will be years before these devices will be available to consumers. One of the main reasons for this is the length of the FDA approval process. While this process is obviously important for ensuring the safety of a device, for those who live with the fear of potentially-fatal glucose levels and long-term complications, these delays can be frustrating. This extended wait for this new technology is a key motivator behind the user-driven developments in diabetes care discussed below.

In sum, while the technology for diabetes management has progressed significantly in the past few decades, with pumps offering ongoing insulin delivery and CGMs providing real-time access to glucose levels, these tools are nevertheless limited. Although an artificial pancreas which links these tools together has been developed which could offer significant benefits to people with type 1 diabetes, this technology is not yet available, and this has motivated several user-driven innovations.

The #OpenAPS and Nightscout Projects

One of these user-driven innovations is the Open Artificial Pancreas System (#OpenAPS) Project. The project is led by a group of independent researchers, united by the hashtag #wearenotwaiting, with the goal of producing a fully-automated artificial pancreas using already existing technology, including CGMs and insulin pumps. According to one of the lead developers, Dana Lewis, the project was started, in part, due to the long wait for the development of an FDA-approved artificial pancreas (Lewis 2015). The project is “founded on open-source and open-science principles” (Lewis 2015), and therefore represents a challenge to traditional biomedical research models, in which technology is developed by a small team of experts exclusively.

According to its site, the project began almost two years ago when Dana Lewis and Scott Leibrand decided to try building a preliminary closed-loop pancreas system using existing FDA-approved technology and readily available parts (OpenAPS 2015). This initiative was termed the #DIYPS (Do-It-Yourself Pancreas System). Since the project began, a number of other developers have begun sharing their own DIY pancreas systems, and according to the #OpenAPS site there are now “up to a dozen independent researchers” running their own DIY systems (ibid.). The #OpenAPS project is aimed at bringing together these innovators to develop a blueprint for an FDA-approved, fully-automated artificial pancreas system (ibid.).

One of the key developments related to the #OpenAPS movement is the Nightscout project. This initiative was launched when John Costik, whose son has type 1 diabetes, discovered a way to transmit glucose levels over the internet using widely-available parts, a CGM, and a remotely-run app (Linebaugh 2014). Along with other innovators, Costik developed a system that allows a caregiver to monitor a child’s glucose levels remotely, thereby giving more independence to children and others with type 1 diabetes who rely on caregivers. The developers made the blueprints and software for this system open access, allowing others to replicate it at a low cost (ibid.). Upgrades to this system are discussed and implemented by a community of developers using Github, a collaborative coding platform (Nightscout Contributors 2014). To participate directly in the development of the project, a person must be able to read and write in several programming languages. However, users who do not know these languages can still have some impact on the development of the technology by making suggestions on Github (ibid.). The system has received a groundswell of support from the type 1 diabetes community. The Facebook Group dedicated to transmitting glucose monitor data remotely has grown rapidly in the past year, from 7000 members in October of 2014 (Leibrand 2014), to nearly double that in August of 2015. While most users are from North America and Europe, there are, according to the Nightscout site, users in every continent save Antarctica (Nightscout Project “Map” 2015).

The Nightscout project addresses many of the problems with traditional models of assistive device research. As already noted, assistive devices are often created at some remove from users, but the Nightscout project allows the individual with type 1 diabetes to have direct influence on the development process in a way that is self-determined. Although knowledge of multiple programming languages is required for a person to have a direct influence on the system, anyone with web access is able to make suggestions for the project. This means that the technology develops in direct response to the needs identified by those living with the disease. In addition, the Nightscout project emphasizes user agency by allowing many users to define the parameters of their involvement in the design process. This mitigates some of the problems with the predominant models of design for disability which, as already noted, can render a user dependent on designers or on their devices.

Rather than approaching design through the traditional aim of fixing an illness, the Nightscout development community has created technology that takes into account the multiplicity of roles that assistive devices play in an individual’s life. So, the developers of the Nightscout project have programmed aspirational messages into the remote app interface. For example, when a user achieves optimal glucose numbers, a smiley face appears on the interface with the words “happy dance!” Messages such as this one add an element of fun into diabetes management and the technology therefore eschews the traditional model of medical devices, which focuses almost exclusively on functionality. Moreover, the developers have created apps for a variety of different devices with the aim of meeting users’ aesthetic preferences. By taking aesthetics into account, the project exemplifies one way of dealing with the challenge, identified by Blume, of making assistive technology reflect the multivalent range of meanings that these devices hold for their users (Blume 2012, 356-7).

The community has contributed not only to Nightscout’s design, but also to its troubleshooting. In the “CGM in the Cloud” Facebook community, users receive technical support from peers. Like the technology itself, this support emerges in response to actual user needs, as opposed to the needs defined exclusively by the medical industry. Traditionally, troubleshooting for a device focuses on the mechanical aspects of it, but the troubleshooting that takes place in the Nightscout forum covers some of the non-technological challenges of living with a medical device, such as what to do when exercising, and how to work with schools to ensure that students have access to their devices.

Aside from the advantages of its user-driven participatory model, the Nightscout project also highlights some benefits of collaborative research more generally. Since its developers collaborate online, they can come from different parts of the world. Thanks to this geographical diversity, developers bring to the project a wide range of skills and talents, since training and approaches to technological development vary significantly between regions. Developers also bring diverse experiences with diabetes technology, since many existing devices are limited to certain geographical areas. This means that developers can compare a wide range of existing technology to identify what works best.

While the principles of user-driven participatory design that lie behind Nightscout are admirable, it is worth noting some limitations to the project as it currently exists. Currently, not all roles in the development process are available to all users. As noted, those who wish to have direct influence over the development of the project must first develop some programming skills, and there are various barriers to learning these. While in theory all users can contribute to the project through less direct means, such as the “CGM in the Cloud” group or Github, it is important to keep in mind that online communities such as these remain inaccessible to some, as Katie Ellis and Mike Kent have argued (Ellis and Kent 2011, 1-11).

At this stage, both the #OpenAPS and the Nightscout projects are based on devices that can be difficult to use. As already noted, CGMs continue to present accessibility problems to people with visual and other impairments. Moreover, the CGM sensors that are key to the Nightscout project are not available in many countries. Even where these devices are available, they are, for many, prohibitively expensive, and some insurance plans do not cover them. The Nightscout community is generally sensitive to these financial and geographical problems, and there have been some steps taken to mitigate the costs of running the system. For example, the project requires a cloud platform to run, and the Nightscout developers have provided instructions for ensuring that use of this platform remains free (Nightscout Project “Azure” 2015). Although users do not yet have equal access to, or control over, the design process of Nightscout, the project nevertheless represents a significant innovation in this respect, and it is valuable for highlighting many of the benefits of user-driven design.

Implications for User-Driven Participatory Design

The #OpenAPS and Nightscout projects provide insight into the current state of participatory design. They show how this kind of design can address some of the problems that scholars of design for disability have identified with traditional models of development. Where these traditional models approach design with the primary aim of correcting an impairment, user-driven models, such as Nightscout and #OpenAPS, can take into account more multivalent user goals. And where traditional models sometimes give the disabled community a sense of dependence on the medical industry by sidelining disabled users during the design process, participatory design models give users greater agency. This is illustrated by the Nightscout project. Moreover, in the case of the Nightscout project, the increasing democratization of programming skills has allowed for even greater possibilities for user control, as users now have more options in terms of how much they want to engage with the design process.

At the same time, the Nightscout project in particular has highlighted some of the roadblocks to further user- and community-driven developments. One of these is the lack of models for cooperation between governmental regulatory agencies and community developers. The Nightscout project has largely developed independently of regulatory agencies, but this is obviously not ideal, as these agencies are crucial for providing arm’s-length oversight. In the case of the Nightscout project, core developers have been working on establishing frameworks for evaluating the project’s success and for ensuring its continued safety (Nightscout Contributors 2014). In addition, several core Nightscout developers have chosen to work with the FDA in establishing a set of best practices for user-driven innovations going forward (Leibrand 2014). The Nightscout project therefore underlines the need for agencies to establish guidelines and frameworks for community-driven assistive technology—ones that reinforce and supplement the checks put in place by independent design groups. In this way, agencies can support the role suggested by Vic Finkelstein in 1991, who argues that medical professionals should think of themselves as “a resource to be tapped by disabled clients, rather than as professionals trained to make highly specialised assessments of what is appropriate for individual disabled people” (Finkelstein 1991, 36).

In addition, while several of the users of the Nightscout project have the programming skills to have direct influence over the development of the project, many do not, and this disparity highlights another roadblock to user-directed participatory design for accommodation technology: that it requires technological skills that many lack. People with disabilities can face any number of barriers to becoming proficient in these skills. The Nightscout project should therefore prompt us to consider more ways of allowing users to direct their own involvement in design. More designers could create devices that emphasize customization and self-directed modification, as this would give people with disabilities greater control over their devices. Going forward, research centers, grassroots organizations, and governmental agencies could make training in skills such as programming and engineering more accessible to those with disabilities; this would allow more people with disabilities to fruitfully gain control not only of their devices, but also of their roles in design.

#OpenAPS and Nightscout are suggestive of the new possibilities for user-driven design enabled by the greater accessibility of tools for technological development. These developments can be decentralized to an unprecedented degree and, concomitantly, can be made to respond more directly to the needs and interests of those with disabilities. While there are still barriers to this kind of participatory design for many, it is to be hoped that agencies, community groups and grassroots organizations will find ways of making these models of development more accessible going forward.

Acknowledgments

I would like to thank the editors and reviewers who provided guidance while this essay was in development.

Bibliography

Atkinson, Mark A., George S. Eisenbarth, and Aaron W. Michels. 2014. “Type 1 Diabetes.” The Lancet 393(9911): 69-82.

Blume, Stuart. 2012. “What Can the Study of Science and Technology tell us about Disability?” In The Routledge Handbook of Disability Studies, edited by Nick Watson, Alan Roulstone, and Carol Thomas, 348-360. Abingdon: Routledge.

Breton et al. 2012. “Fully Integrated Artificial Pancreas in Type 1 Diabetes: Modular Closed-loop Glucose Control Maintains Near Normoglycemia.” Diabetes 61(9): 2230-7.

Clarke, S. F., and J.R. Foster. 2012. “A History of Blood Glucose Meters and their Role in Self-Monitoring of Diabetes Mellitus.” British Journal of Biomedical Science 69(2): 83-93.

Coulin-Frankel, Jennifer. 2011. “Trying to Reset the Clock on Type 1 Diabetes.” Science 333 (6044): 819-821.

Ellis, Katie, and Mike Kent. 2011. Disability and New Media. New York: Routledge.

Finkelstein, Vic. 1991. “Disability: An Administrative Challenge?” In Social Work: Disabled People and Disabling Environments, edited by Michael Oliver, 19-39. London: Kingsley.

Gale, Edwin A.M. 2006. “Dying of Diabetes.” The Lancet 368(9548): 11-17.

Haidar, Ahmad et al. 2014. “Comparison of Dual-Hormone Artificial Pancreas, Single-Hormone Artificial Pancreas, and Conventional Insulin Pump Therapy for Glycaemic Control in Patients with Type 1 Diabetes: an Open-Label Randomised Controlled Crossover Trial.” The Lancet Diabetes & Endocrinology 3(1): 17-26.

JDRF. 2015. “Artificial Pancreas Project.” Accessed May 2, 2015. http://advocacy.jdrf.org/our-work/artificial-pancreas-project/.

Johnson, Liz and Eileen Moxon. 1998. “In Whose Service? Technology, Care and Disabled People: The Case for a Disability Politics Perspective.” Disability and Society 13(2): 241-257.

Leibrand, Scott. 2014. “How and Why we are Working with the FDA.” DIYPS, October 12.            http://diyps.org/2014/10/12/how-and-why-we-are-working-with-the-fda-background-and-a-brief-summary-of-the-recent-meeting-with-the-fda-about-the-nightscout-project/.

Lewis, Dana. 2015. “Introducing the #OpenAPS project.” OpenAPS, February 4. http://openaps.org/.

Linebaugh, Kate. 2014. “Citizen Hackers Tinker With Medical Devices.” Wall Street Journal, Sept. 26. Accessed April 29, 2015, http://www.wsj.com/articles/citizen-hackers-concoct-upgrades-for-   medical-devices-1411762843.

Newell, A.F., et al. 2010. “User-Sensitive Inclusive Design.” Universal Access in the Information Society 10(3): 235-243.

Nightscout Contributors. 2014. “Nightscout FDA Presubmission 2.0.0 Documentation.” Accessed May 9, 2015. http://nightscout.github.io/fda-presubmission/01-description.html.

The Nightscout Project. 2015. “Map.” Accessed August 12, 2015. http://www.nightscout.info/map.

The Nightscout Project. 2015. “Azure Management.” Accessed August 12, 2015. http://www.nightscout.info/wiki/faqs-2/azure-2/azure-management.

OpenAPS. 2015. “Learn More About #OpenAPS.” Accessed May 8, 2015. http://openaps.org/about-openaps/.

Oswal, Sushil. 2014. “Participatory Design: Barriers and Possibilities.” Communication Design Quarterly 2(3): 14-19.

Oudshoorn, Nelly, and Trevor Pinch. 2003. “Introduction: How Users and Non-Users Matter.” In How Users Matter: The Co-Construction of Users and Technologies, edited by Nelly Oudshoorn, and Trevor Pinch, 1-25. Cambridge, Mass: MIT Press.

Pullin, Graham. 2009. Design Meets Disability. Cambridge, Mass.: MIT Press.

Rao, Venkatesh. 2012. “GitHub and the Democratization of Programming.” Forbes, Mar. 27, Accessed August 20, 2015. http://onforb.es/Hi9PjB.

Seaquist, E.R. 2013. “Hypoglycemia and Diabetes: A Report of a Workgroup of the American Diabetes Association and the Endocrine Society.” Diabetes Care 36(5): 1384-1395.

Sharma, Rakesh. 2013. “The 3D Printing Revolution You Have Not Heard About.” Forbes, July 8, Accessed August 20, 2015. http://onforb.es/14Yyxj5.

Swanson, Ana. 2015. “How the Data Revolution Could Transform the Way People Live with Diabetes,” Washington Post, April 22. Accessed April 29, 2015. http://wpo.st/cAeG0.

Zola, Irving Kenneth. 1977. “Healthism and disabling medicalization.” In Disabling Professions, edited by Ivan Illich, et al., 41-69. London: Marion Boyars.

Zola, Irving Kenneth. 1982. “Social and Cultural Disincentives to Independent Living.” Archives of Physical Medicine and Rehabilitation 63: 394-397.

About The Author

Krista A. Murchison is a Ph.D. candidate and part-time professor in the Department of English at the University of Ottawa. Her research centers on medieval England’s popular literature of religious instruction. Her dissertation examines the development of manuals for penitents, and the tensions surrounding these texts and the asynchronous learning that they enabled. In recent years, she has developed a secondary interest in the intersection between pedagogy and technology, and delivered a paper on using online tools to teach Middle English literature at the most recent Digital Humanities Summer Institute in Victoria. Her work has appeared in journals including the Chaucer Review and the Bulletin of the John Rylands Library.

2

Table of Contents: Issue Seven

Introduction
Peter M. Gray and Renee McGarry

Collaborative Curricula Linking Digital Studies and Global Health
Virginia Kuhn and Heather Wipfli, with Jason Lipshin and Susana Ruiz

The Place(s) of Mentorship and Collaboration
Katie Zabrowski and Nathaniel Rivers

Simulating Utopia: Critical Simulation and the Teaching of Utopia
Francesco Crocco

Transforming the Site and Object Reports for a Digital Age: Mentoring Students to Use Digital Technologies in Archaeology and Art History
Elizabeth Macaulay-Lewis

#FYCchat – A Case-Study of Connected Learning and Educators
Lee Skallerup Bessette

Special Feature: Behind the Seams

Interactive Technology for More Critical Service-Learning?: Possibilities for Mentorship and Collaboration within an Online Platform for International Volunteering
Willy Oppenheim, Joe O’Shea, and Steve Sclar

 

Issue Seven Masthead

Issue Editors
Renee McGarry
Peter Gray

Managing Editor
Leila Walker

Copyeditors
Stephen Brier
Anne Donlon
Carlos Hernandez
Michelle Johnson
Kimon Keramidas
Andrew Lucchesi
Benjamin Miller
Leila Walker

Style & Structure Editors
Stephen Brier
Carlos Herhandez
Benjamin Miller
Dominique Zino

Skip to toolbar