A Deaf with disabilities (DWD) male professor, two hearing female teacher candidates, 11 parents (four of whom were immigrants), and six DWD children sought to better understand the experiences of parents of DWD children (Singer, Kamenakis, Shapiro, & Cacciato, Reference Singer, Kamenakis, Shapiro and Cacciatoin press). We wondered what influenced parents’ decisions about how their children would communicate, how they would be educated, and what inclusion meant for them. In this ethnographic study, approved by the authors’ institutional review board, we utilised interviews, participant observations, and focus groups. The findings of the study excavated how parents’ early lives with their children were filled with ‘doom and gloom’ about acute medical needs and very little about communication, joy, or identity. Internet resources played a significant role in parents’ decisions for their families to learn and use American Sign Language (ASL), though the skills of family members varied widely. It was this mode of communication that segued to their understanding of inclusion for their children. That vision was one where their children could communicate directly with their peers and teachers, not always be ‘the lowest’ student, and where their school citizenship was more of a focus than their disabilities.
Throughout the study, we, the researchers, and the participants negotiated our hearing statuses, language use (ASL, Spanish, Urdu, and English), disabilities, genders, and academic ranks. We documented a perspective about DWD communication and educational experiences that educators rarely witness — from the other side of the table. We invited a Hard-of-Hearing co-author to facilitate the documentation of our experiences conducting the research. Our objective was to elucidate the implications of how we conducted our work and its impact on the future of conducting research with and among Deaf, DWD, people with disabilities, students, and others who communicate in nonnormative ways in the United States. In this essay, we reflect on three themes, which suffused our journals and conversations: (a) researcher positionality, (b) negotiating power in research, and (c) language variation in practice. We begin each theme by providing ruminations about our research. Next, we contextualise these accounts within relevant scholarship, attempting to locate some amount of resolution to the human experiences upon which we reflect. At the end of each section, we provide key takeaways for doing research with and among people in special educational settings who communicate in nonnormative ways. We conclude with a culminating discussion.
There is a conspicuous polarisation of opinions that has existed for centuries about how Deaf children should learn to communicate and how they should be educated (Fernandes & Myers, Reference Fernandes and Myers2010; Van Cleve, Reference Van Cleve2007). One camp believes that Deaf people should learn to speak and use technology to enhance residual hearing. The other camp understands being Deaf as part of a person’s cultural identity and that the use of sign language is an expression of that identity. Of course, many scholars concede that the answers to these questions are not so dichotomous, but these paradigms still reign. Despite a researcher’s responsibility to remain objective, it is a difficult task when their experiences or philosophical position guide them in a different direction. The reality is that there is not enough evidence to claim there is a right way for Deaf people to communicate or be educated that leads to improved educational outcomes or quality of life, because there are too many variables within a relatively small population (Knoors & Marschark, Reference Knoors and Marschark2018). Nevertheless, Deaf studies scholars continue to base their scholarship on unwavering fundamental beliefs about this age-old controversy. There is unspoken and generally accepted bias in the discipline that communicates the colloquial ‘agree to disagree’ sentiment. Unlike much of our, the authors’, other scholarship, we choose to be unapologetically transparent about our bias in this paper, and from this frank exploration, produce a set of pragmatic takeaways, which may be applied regardless of an individual’s philosophy about communication.
Process
The research team generated data in several ways for this self-study. Directly after any research data collection event, researchers recorded field notes and reflexive journals (Behar, Reference Behar1996) totalling 150 pages. We recorded the conversations we had driving back from research sites. Between sessions, we generated writing prompts for one another about our backgrounds, perceptions, and experiences both prior to and during the research. At the end of the research, we read each other’s writing and provided prods for additional details. Finally, we generated a series of questions about any topics that we felt were underdeveloped and recorded a 2-hour focus group. We had all recorded conversations transcribed. Using open coding for grounded theory qualitative research (Bogdan & Biklen, Reference Bogdan and Biklen2007), we analysed all the texts. We continually read through the transcripts keeping questions of why, who, when, how often, and in what way in our minds until we were able to identify patterns in the data. We highlighted sections of text that represented each pattern in different colours, which sometimes fit within multiple patterns. We then collated these excerpts and continued reading them together to extrapolate the broad meaning of what they communicated. After chunking data in this way, we selected categories to develop into themes, which were relevant to conducting future research with people with disabilities, paying particular attention to coding density as a way of indicating what ideas weighed on our minds the most. Ultimately, we chose not to represent the data as findings (e.g., quotations), because we felt it was more productive to use it as a scaffold for a discussion about the relevance and applications of what we found.
Theoretical Framework
We approach our Deaf studies work integrating social justice and disability studies frameworks. Disability studies is necessarily social in nature, interdisciplinary, participatory, and values based, and understands disability as a foundational human characteristic (Ferguson & Nusbaum, Reference Ferguson and Nusbaum2012). However, we understand that disability is but one identification that informs our research. Our work must also address broader discourses about oppression, privilege, and stratification, because all our identifications contribute toward the world in which we live and study. A social justice lens of analysis such as this centres on the mechanisms of all forms of oppression and works to undermine how we perpetuate these systems of inequity (Cochran-Smith, Reference Cochran-Smith2004). These theoretical lenses led us to apply the approach of emancipatory research to what we learned in our self-study, which is an approach to conducting research created from the theoretical underpinnings of Deaf/disability studies and social justice disciplines. Emancipatory research seeks to empower research participants with disability by disrupting existing power differentials between the researcher and participants, ensuring research results in a benefit to participants, and providing ways for participants to be involved in the creation of the research (Oliver, Reference Oliver1992; Petersen, Reference Petersen2011).
Researcher Positionality
Our findings highlighted how researcher positionality in this study played a significant role in our reactions to participants and the interpretation of the data. As researchers who share a common philosophical position about Deaf people, we felt it integral to reflect on the benefits and liabilities of admitting to this subjectivity. We found that our perception of the DWD participants was not much different than that of other Deaf people and thus do not differentiate our subjectivity between the two identity labels.
Researcher Background
Steve was the principal investigator in this research and is a professor of Deaf education. He forged a culturally Deaf identity and uses ASL as his primary mode of communication. Fourteen years ago, at the age of 28, he suddenly became Deaf. This places him in a bit of a place of ‘inbetweenity’ (Brueggemann, Reference Brueggemann2009) where he still uses speech in some spaces and ASL in others. He is often marginalised in both hearing and Deaf communities, though he feels no contention about his Deaf identity. He also has learning disabilities and struggles with mental health. Steve’s scholarship is motivated by his earlier life of poverty and his experiences with systemic ableism.
Allison was an undergraduate research assistant. She is an accomplished teacher candidate in the Deaf education program in which Steve instructs. Though relatively new to ASL and Deaf culture, she quickly became proficient in ASL and an advocate for Deaf people. A summer camp performance in ASL sparked her interest in pursuing a career in Deaf education, a field that she has become increasingly passionate about as her collegiate studies have progressed. Allison also volunteers for a postsecondary program for adults with intellectual and developmental disabilities.
Julianna was also an undergraduate research assistant and teacher candidate in the same program as Allison and Steve. She studied ASL for several years and has emerged as a strong advocate for Deaf people. Our research inspired her to obtain her interpreting licence in addition to a teaching certification. Julianna’s volunteer work in the postsecondary program for adults with intellectual and developmental disabilities provided her with varied experiences that supported interaction with the DWD children in the study.
Our views about Deaf people are consistent. We believe that all Deaf children should have early access to a full language, whether that is spoken language through the use of technology or by using ASL. We feel the discourse surrounding Deaf children and their families is over-medicalised and oral-centric. Although we do not prescribe to a singular mode of communication or educational placement for Deaf children, parents should be able to make informed decisions about their children, which necessarily requires overcompensation for the representation of Deaf as a sociolinguistic minority, because the world in which we live is overwhelmingly hearing. In general education settings for Deaf students, we worry about the quality of educational interpreters, other support services, and true access to school citizenship. How do Deaf children come to understand themselves when they are the only child in the school who is Deaf? In Deaf schools, we worry about systematic disenfranchisement associated with segregation. Finally, we believe that it is beneficial for anyone to be multilingual. Even when Deaf children primarily use speech and technology to communicate, learning ASL expands their communication toolboxes and may connect them with other Deaf people, creating a stronger sense of community. Furthermore, as many Deaf students explore their identities as they age (Freebody & Power, Reference Freebody and Power2001; Weldon, Reference Weldon2016), it is important that educators ensure they have the communication skills to do so. We demand more from schools, from parents, and certainly from ourselves.
Perception of Participants
The parents in the study were hardworking parents committed to providing their children with quality educational and communication opportunities, but we struggled to manage our feelings about access to language for the children in this study. All children in the study used sign language as their primary mode of communication. This was the mode that their parents chose for them, because speech and cochlear implants had limited benefit for them. With some exceptions, their parents, siblings, and teachers did not sign fluently. When Steve became Deaf, none of his family or friends chose to learn ASL. Consequently, they became distant and many of those relationships ended. He didn’t wish to judge these parents, but his experience unavoidably informed his opinions. We imagined what it was like to be a child and not have clear communication with your parents. How difficult was it for the children in our study to exist in the margins while at school because of the stigmatisation of disability, only to return home to feel in the margins there too? In reality, these children had wonderful relationships with their parents and together they generated effective multimodal communication systems that involved signs, speech, gesture, texting, and drawing. However, parents were quick to highlight how limited their ASL skills were, which served as an emotional reminder of Steve’s own experiences. Allison and Julianna, too, felt a certain unease having learned that children who don’t have strong language models tend to lag behind their peers in academics and social skills (Marschark, Lang, & Albertini, Reference Marschark, Lang and Albertini2002). For Allison, it was upsetting to see that in some families the parents did not prioritise ASL learning for the entire family, even though that was the language the child participants used. For Julianna, the inadequate ASL skills of the parents was problematic. In several cases, it was only the mothers who learned to sign, and one of them rated her signing skills as ‘proficient’. On an intellectual level, we understood that money, time, parenting responsibilities, work, and a myriad of other influences affected parents’ access to developing strong ASL skills, but we struggled to resolve our feelings about the communication incompatibility between the parents and children in our study. These admissions are purposefully unbridled, and as we baulk reading what we have written, we understand how important it is to reflect on our biases irrespective of their justifications. We cannot possibly fully understand the experiences of these families, and whatever impetuous reactions we had were undoubtedly misguided, but they guided us nevertheless.
Unpacking Positional Bias
The positionality of researchers and participants can have implications on the perceptions between them, as well as among members of the research team. Positionality can be described as the social context that creates identities and people’s perceptions connected to privilege or power within different contexts (Anderson, Stahley, & Cullen, Reference Anderson, Stahley and Cullen2014; Greene, Reference Greene2014; Grimaldi, Serpieri, & Spanò, Reference Grimaldi, Serpieri, Spanò, Bhopal and Deuchar2015; Relles, Reference Relles2016). In research settings, researchers use language that exhibits their expertise about the enquiry subject, which can lead to participants feeling inferior (Hoyle, Reference Hoyle2001; Thye, Willer, & Markovsky, Reference Thye, Willer and Markovsky2006). Perceptions informed by researchers’ unique positions may also affect the analysis and interpretation of data. Specifically, issues of ‘researcher entitlement’ arise when researchers choose one interpretation while ignoring other possible interpretations (Frost et al., Reference Frost, Nolas, Brooks-Gordon, Esin, Holt, Mehdizadeh and Shinebourne2010), or use language that is intended to elicit a desired response, whether intentional or not (Dean et al., Reference Dean, Furness, Verrier, Lennon, Bennett and Spencer2018). Our philosophies about communication for Deaf people and our positions in the academy clearly shaped the scholarly products we produced from our research in ways that presumably differed from how the participating families would have represented themselves.
When researchers and participants use different languages to communicate, it exacerbates already existing power disparities created by the research context (Alzouebi & Pahl, Reference Alzouebi and Pahl2006). The effects of language use, pragmatics, and semantics are not limited to relationships between researchers and participants, but also among research team members. It is complicated to resolve linguistic privilege when a principal investigator works with student research assistants or other junior researchers, because their power influences the relative valuation of language use in the relationships (Middleton & Cons, Reference Middleton and Cons2014; Nyquist & Wulff, Reference Nyquist and Wulff1996). Students’ experiences in college inform them that they hold subordinate positions in relation to their professors, but those lines become blurred when the students and professor work side by side on a project where they all contribute as experts.
Although the participants in the study viewed the researchers as experts about ASL language, Deaf education, and disability, the researchers relied on the parents to provide expert information about having a DWD child. Parents looked to the researchers for information and resources about how to best support their children in school and the community. This phenomenon in research results in participants generating less data because their focus shifts from reporting their experiences toward seeking information from the researchers (Orb, Eisenhauer, & Wynaden, Reference Orb, Eisenhauer and Wynaden2001). Nevertheless, we appreciated this reciprocity, because we feel it partially redressed our requisite partisanship in the creation of an empirical study that was publishable.
Parents discussed a similar phenomenon of shifting roles of expertise happening in their interactions with schools. The parents went to schools to speak with professionals whom they assumed to be experts on educating children only to discover that the school administrators and support professionals relied on them to be the experts. Although often frustrating, parents and educators relied on their unique positions to contribute toward creating effective educational services for the DWD children. This makes research in special education challenging because expectations and perceived roles consistently shift, but our observations and experiences in the research highlight the benefit of reframing the narrative about the liabilities of positionality as collaboration among constituents that hold unique epistemes, which can be partnered to serve the needs of each — parents, schools, researchers, and DWD children.
Key Takeaways for Managing Bias in Special Educational Research
Owning and balancing bias
Researchers are subjective. We obfuscate this subjectivity. Sometimes we make partial admissions of it but fear compromising our legitimacy as researchers. Being truly honest opens us to criticism. In disciplines like Deaf studies and disability studies, where partisanship is common, it benefits a research team to include members that represent a wide range of perspectives. Their combined charges become maintaining balance and decreasing myopic interpretations of data through open dialogue about their backgrounds and reactions to data. We feel this is a more effective way to manage bias in all special educational research than simply trying to keep ourselves in check or palliating our scholarship.
Making your experiences count by documenting them
We feel it is integral that special educational researchers maintain reflexive journals. While there is bias in all research, it may be particularly important to be sceptical of ourselves when doing research with historically marginalised populations like people with disabilities. After all, while some oppression is overt, other forms of oppression are covert and often enacted unintentionally, even by those who make careers out of dismantling it. Simply considering our subjective positions is insufficient to confront how they affect our work and our potential complicity in maintaining a system that disempowers people with disabilities. There is a certain culpability in saying it or writing it to someone else (e.g., this manuscript). A purposeful dialogue creates a research environment that embraces the human components of doing research, informs consumers of research, and helps researchers develop deeper understandings of their own bias. Writing, revising, and having others read our admissions of bias is not simply ‘coming clean’. It is one way to engage a process of personal change.
Negotiating Power in Research
The researchers entered the study with widely varying expectations. Steve anticipated it would be laborious to mentor the student researchers and might compromise the other scholarly activities he does in the summer. Allison and Julianna anticipated working long hours, giving up their hard-earned vacations, and were unsure about working with Steve, whom they knew from taking his courses. However, we all enjoyed the experience a great deal and each learned new skills (e.g., mentoring and research). Nevertheless, it took some negotiation of our internal narratives and the power differentials inherent in the research relationships to resolve our relationships with each other and with the participants. While we make no claim to mitigating the complexities of the power relationships we highlight below, we capitalised on our various privileged and marginalised identifications, which we feel contributed to more valid research findings.
Negotiating Status and Gender
There we were, two young women and a middle-aged man conducting research, but it was not quite that simple. Steve had a framed PhD on the wall, conducted research numerous times, held a professorship, and generally assumed the role as ‘expert’ in the triad. Despite all this, he was a junior scholar, constantly combating feelings of inadequacy and distorting the messages he received from colleagues and students into derogations. Allison and Julianna were students who would take more courses with Steve in the future and would rely on him for letters of recommendation. They had much at stake. Although Julianna projected a confident and competent persona, it was simply the veneer of a more fragile and apprehensive woman, struggling with perfectionism. Allison was contemplative and articulate, choosing her words carefully, but behind those words was a somewhat less secure woman trying to understand who she was as a teacher and scholar. Countless times, our appearances and our true Selves threatened the stasis of our relationships. Were Allison and Julianna going to discover that Steve didn’t have all that much to offer them as a supposed expert? Was Steve going to find these young women’s work unsatisfactory and it cast a shadow on their remaining years of work together? Were either Allison and Julianna going to realise the other was a stronger scholar? Our insecurities undermined our efforts, but we were often successful at communicating and resolving these feelings. Had we harboured them, the success we constructed in the research would have toppled into a rubble of misunderstandings. Steve reflected that he wished that his relationships with faculty members could be so forthright, but understood that with them, there was more at stake — the next 25 years of his career. In the end, it was one of his favourite experiences as a professional and served as a model for how to approach his future work. For Allison and Julianna, working on a research project of this calibre was a new experience for both of them. However, in their weeks together, they not only realised how capable they were, but also discovered many things about themselves in the process. For example, Allison decided that she wants to pursue a special education degree in addition to her current studies in Deaf education. Julianna found herself informally interpreting for Steve throughout the work, which reignited her passion for ASL, and decided to become a licensed interpreter.
The team also negotiated gender in their relationships with each other and the participants. Julianna had a difficult time trusting men due to the absence of her father since a young age, which made her hesitant to work with Steve. Although Allison did not feel she harboured any specific gender bias, she was aware of the dynamic between Steve and Julianna, which made her feel uneasy. Educators are disproportionately women, making up 77% of teachers (Snyder, de Brey, & Dillow, Reference Snyder, de Brey and Dillow2019), which was great for Steve, who also had a difficult time forming relationships with people who exude normative masculinity, because he was bullied as a child. For Allison and Julianna, two female teacher candidates, becoming a member of a largely female-dominated field has affected them in various ways. Allison struggled with how the profession of teaching is undervalued in the United States and is viewed as ‘women’s work’. As a feminist, she felt conflicted about seeming to conform to gender stereotypes and emphasised that deciding to become a teacher was her choice. For Julianna, pursuing a career in education has not provided her with many opportunities to interact with men in professional settings. Although this made her more comfortable, it also inhibited her ability to work through her gender-related issues when it came time to confront them during our research.
During the research, the team had to resist their scepticism of the fathers, which was born from their previous experiences with men. We came to realise that we tended to talk more to the mothers of the families, not only because we were more comfortable interacting with them, but also because they also tended to take a more active role in talking. The fathers were often quiet, interjecting when they had something they felt was important to contribute. This dynamic was not surprising given gender norms in the United States. As mothers explained how much labour they put into planning medical and educational needs for their children and filtering information to the fathers, it was difficult to parse out the ways fathers contributed to parenting. This often resulted in an appearance of the fathers as less participatory. Steve pondered if this is how researchers would view his family if they were participants, and suddenly felt conscious of his own shortcomings as a husband and father. However, we were aware that the fathers in the study had increased labour too. They worked long hours at their jobs and had more ‘on-the-ground’ work of caretaking while the mothers tended to planning needs. It was easy for us to adopt a standard supportive response about women’s work without objectively assessing the situation, because our own experiences with gender predisposed us to being critical of men. Regardless of the reality of the lives of these parents, our response was problematic.
Our problematic responses were not limited to gender. We negotiated socioeconomic strata within our team and with the participants too. The participants who had advanced degrees or who had specific training about disability and Deafhood, the process of actualising a culturally Deaf identity, spoke in a register that resonated with the three of us. They used tone, pacing, lexicon, and turn-taking that was familiar to us as teachers and scholars. Participants who had achieved lower levels of education interacted in much more vernacular ways. They interrupted each other and other participants, frequently swore, and became animated when they spoke about topics they found evocative. For Steve, this was strange. He had lived what seemed like two different lives. His early life had been insecure, frenetic, masculated, and crass, whereas his recent life was more formal, academic, emasculated, and calm. When hanging out with participants from lower socioeconomic strata who did not participate in the research in standard academic ways during observations, Steve felt a bit like he was returning home, but when they entered interview settings, these same types of behaviours felt dissonant. His life experiences collided. Simultaneously, it did not feel out of place when the more affluent families acted in ways stereotypical of their socioeconomic stratum. Julianna appreciated the candour of the parents from lower socioeconomic strata. The anecdotes they shared were part of their real lives, where no editing or scripting was involved. It was natural that they retell these experiences in authentic ways. However, there was a clear divide between the behaviours and language use of participants from different strata. As a consequence of these phenomena, we worried that we sometimes inadvertently gave more credence to the statements of our participants from higher socioeconomic strata than we did other participants and that we directly quoted participants from lower socioeconomic strata more frequently, because their words elicited more imagery and emotion.
Reciprocity in Researcher Relationships
The study was part of a formal summer program for mentored undergraduate research. The idea of the program was that Steve would receive 480 hours of college-funded student assistance to conduct and publish research. Additionally, the students would receive valuable research experience. It appeared to be a good arrangement, but the ‘water-cooler talk’ for both students and faculty was that it was more work for both parties than it was worth. The college had no other Deaf faculty members, so Steve often felt like an ‘island in the [professorial] mainstream’ (Singer et al., Reference Singer, Kamenakis, Shapiro and Cacciatoin press). Except when he was doing work at a Deaf residential school, he was surrounded by hearing people, virtually all of whom do not sign or were learners.
When Steve is with his teacher candidates, it is the most accessible space in which he regularly finds himself. He values this time immensely, but this placed a great deal of gravity on these relationships, which changed the nature of traditional professor–student models and was unfair to both. Steve gained a great deal out of the research beyond witnessing the burgeoning of truly masterful scholars. He made friends, but he also learned more about mentoring his students, because the team made a point about having meta-research/mentoring conversations. Allison and Julianna had access to the personal life of a faculty member, gaining insight and a perception to which they otherwise would not have access. Allison was accustomed to the professional barrier that divides students and professors and found it transformative to have such frank conversations with Steve. Allison and Julianna learned the craft of researching, but have no current intention of pursuing terminal degrees. The additional co-author, Kimberly, plans to complete a doctoral degree. At the conclusion of our work together, the four of us will have two international refereed conference presentations and three refereed publications. In terms of scholarly dividends, Kimberly and Steve will likely benefit more from these than Allison and Julianna, which leaves Steve feeling indebted to these women.
Unpacking Power in Research
Scholars often discuss power dynamics between researchers and participants (see Bravo-Moreno, Reference Bravo-Moreno2003; Huckaby, Reference Huckaby2011; Riley, Schouten, & Cahill, Reference Riley, Schouten and Cahill2003). Because researchers are supposed experts, have control over the research process, and grant any research compensation, they must be careful to consider the effects these have on participants and the scholarship they produce (Schultz, Nolan, Cialdini, Goldstein, & Griskevicius, Reference Schultz, Nolan, Cialdini, Goldstein and Griskevicius2007; Shah, Reference Shah2004). Furthermore, titles, language use, and appearance can indicate positional status, which can highlight commonalities in background or qualifications, but can also lead to emphasising various privileged and marginalised statuses (Hoyle, Reference Hoyle2001; Thye et al., Reference Thye, Willer and Markovsky2006). Researchers turn to participants because they are experts on the subject matter, but this understanding does little to resolve power differentials between researchers and the researched (Thye et al., Reference Thye, Willer and Markovsky2006). There is also significant stratification within a research team and how researchers negotiate these power differences can affect the research outcomes in significant ways. People consist of rich interrelated identifications, which may be advantaged, disadvantaged, or both in different times and places (Curtin, Kende, & Kende, Reference Curtin, Kende and Kende2016). Researchers’ experiences with power and disempowerment affect how they interpret information, often aligning them with those who have had similar experiences as them while estranging them from those who represent different sets of experiences (Sirnate, Reference Sirnate2014).
Intersectional theory emerged in the 1990s in the field of Black feminist studies, recognising that multiple layers of subordination resulted in different experiences (Crenshaw, Reference Crenshaw1991), and was later applied to the analysis of all marginalised identifications (Cho, Crenshaw, & McCall, Reference Cho, Crenshaw and McCall2013). It was not only that marginalised peoples’ experiences diverged in certain ways, but also that layers of difference created multidimensional ripples of intricacy. Siebers (Reference Siebers2011) forthrightly claimed that intersectionality is disability studies; that the field becomes misshapen and misinformed when intersecting identities are neglected in analysis.
The focus of intersectional thinking is on the new spaces that overlapping disempowerment creates rather than a summative list. It is thinking about how various identifications mutually construct one another (Collins, Reference Collins2015). In our work, we discovered new spaces where our various marginalised identifications shifted, often becoming dominant in the research relationships. For example, as we described earlier, being Deaf and using ASL became a source of power, as did femininity. Simply because identifications are ascribed certain power in a given time and place does not mean they cease to exist as marginalised identities. They still exist within larger systems of power, and individuals are created by a culmination of all their past experiences, which continue to affect how they interact with and interpret their present contexts. These new spaces were convoluted, uncharted experiences for us and we were unsure how to negotiate them. They suggested to us that research settings that intentionally or unintentionally empower people who are accustomed to living in the margins are the beginning of a complex conversation, not the resolution to systemic disenfranchisement. What do people with marginalised identities do once they wield power? How do they know how to use it? It may be foreign feeling. How do they resolve their pasts, presents, and futures knowing that power in a very specific context may be fleeting? These are questions with which we grappled and which are likely present in special educational research settings. Liberation can be constraining because participants and researchers alike may be unfamiliar with it.
Our marginalised and privileged identifications seemed to work in tandem to bring balance to the team while conducting this research. Our insecurities catalysed retrospection, critique, and dialogue, though not always in typically anticipated or positive ways. We seldom have the opportunity to laud our experiences with discomfort, subjugation, exclusion, and uncertainty as a credential, but in this case, our internal narratives about our lives as DWD, women, students, or faculty members provided to us preexisting tools that we readily applied to working with participants from marginalised populations. We utilised what we knew about vulnerability to interpret data and to navigate interactions with one another. It is crucial to continue to develop ways to use and reframe ostensibly negative social phenomenon, like the marginalisation of various identifications, as mechanisms of productivity. In doing so, we may help rebalance power by re-storying what it means to be an ‘other’.
Key Takeaways for Special Education Research About Balancing Power
Connecting with students with disabilities through the use of teacher candidates
It is beneficial to recast the mentor/mentee dynamic between researchers and student assistants as colleagues with different skills sets that they bring to the research context. Students as researchers bridge social gaps between young students with disabilities and mature researchers, because they straddle the cultural and academic line between the two. Further, true collaboration and recognition of individual strengths and struggles model to teacher candidates how they too can create equitable, respectful, and reciprocal relationships with their students in their future classrooms.
Preparing teacher candidates to be agents of change
Teacher candidates have limited experience working with students and ostensibly no interaction with parents of students until they become teachers. Participating in social justice research about the target population they will instruct, provides them an invaluable learning experience that extends far beyond the walls of their own and their soon-to-be students’ classrooms. They learn how medical, special educational, and societal influences affect students from a perspective vastly different from their course textbooks, which they can apply to their teaching craft. By expanding their understanding of the experiences of their student population, they inherently become stronger teachers. Students with disabilities as well as adults with disabilities continue to experience a subjugated status in the United States based on notions of incompetence, burden, and general deficit-based conceptions of what disability means (Siebers, Reference Siebers2011). With a stronger understanding of the subjugated positions of students with disabilities in their schools, educators can promote better futures for people with disabilities through instructing self-advocacy and countering ableist ideology in their schools.
Preparing teacher candidates to be reflexive experts
It benefits educators to follow a teacher–scholar model. Even if future teachers will not conduct formal research, developing systematic and objective ways to assess their pedagogical practices, the information they read, and the behaviours of their students is important to continuing to grow as an educator and becoming an expert in their field. Developing a positive relationship with reviewing contemporary scholarship and conducting routine reflexivity assessments creates teachers who become valuable resources to schools and families who implement evidence-based practices in their classrooms. This is particularly important for a rapidly evolving discipline like special education and helps educators advocate for and empower their students.
Inclusion of researchers who have experienced marginalisation
In this research, we found that regardless of the form of marginalisation experienced, we were able to cultivate those experiences to inform our work with marginalised DWD children and their families. By including researchers with marginalised identities in special education research, we improve the chances of ‘getting it right’. This may be particularly true if the experiences of researchers represent a wide gamut of disempowerment, not only ableism, because students with disabilities also have multiple identifications. In order for that benefit to come to fruition, it is crucial that researchers openly discuss their past experiences and how those experiences affect their current work. This dialogue helps all members of the research team to discover and analyse data in ways they might otherwise not and re-story marginalised status from social disenfranchisement to the ways that status can contribute toward epistemic power.
Language Variation in Practice
The researchers and participants in this study used a wide range of languages and modes of communication. We consistently had to consider how communication affected research relationships, data collection, and access. In our research, we negotiated a different language hierarchy than is typical in research conducted in the United States, though not true of Deaf studies specifically, because our communication philosophy and the research questions provided ASL an elevated status. However, this status expressed itself in atypical ways.
Communication Hierarchies
One reason Allison and Julianna joined the research was because they anticipated that their ASL skills would continue to improve while working with Steve and the participants. Steve’s career largely required him to interact with hearing people. In those spaces, he generally spoke. This was not always the case. There were many spaces in which people were unaware that he was capable of speech (e.g., his gym and pharmacy), and when he was around other Deaf people, he only signed. Aside from the ease of expressive communication with his colleagues, he knew that the educational system privileged speech and it would likely serve his career interests in Deaf and disability studies to represent himself as somewhat Deaf and disabled, but not so much that it compromised people’s perception of his competence. For Allison, her prior ASL use had been restricted to classroom settings, and she worried that she would not have the adequate skills to communicate with Steve throughout the research process. Julianna was eager to enhance her ASL skills during the research experience. Despite sometimes struggling to convey her thoughts or opinions in ASL, she never felt there was a communication barrier between the members of the team. However, it was difficult to break communication habits and the team soon found themselves primarily speaking and signing at the same time, despite our understanding that this form of communication often results in misunderstandings (Lederberg, Schick, & Spencer, Reference Lederberg, Schick and Spencer2013). Even though we were free of compulsory use of English, it did not mean that we could automatically clear away the effect it had on us. This is the nature of a colonised people. Deaf people have lived in a state of ongoing compulsory oralism, where their language, norms of behaviour, and traditions have been disregarded by the hearing majority for the sake of assimilation into the ruling culture — colonialism (Anglin-Jaffe, Reference Anglin-Jaffe and Lesnik-Oberstein2015; Ladd, Reference Ladd2003).
Despite the ever-present influence of English, ASL, as an ideal, held the preeminent linguistic position in our research. As required by the Americans With Disabilities Act (1990), the college provided interpreter and transcription services as a work accommodation for Steve during the research. We discussed earlier that the families’ ASL fluency was insufficient to participate in the study using this communication modality, so we used interpreters. During interviews, participants interrupted the discussion to ask the interpreter how to sign various concepts. Sometimes, we found them watching the interpreter rather than looking at us. Other times, we explained to parents what their children signed and provided suggestions for ASL resources. It was clear to us that parents admired the ways we communicated. Three of the families spoke languages other than English at home: two spoke Spanish and one spoke Urdu. Without asking, the families told us they would not need an interpreter. Just like for us, they were well accustomed to negotiating their communication needs. We didn’t press any further. We were concerned, but frankly didn’t have the means to provide Spanish or Urdu interpreters, so not having to address that need was a relief. Our social justice minds couldn’t put the idea to rest. We recognised that because Deaf people existed on a conceptual line between having a disability and being a sociolinguistic minority, that they had rights that other nonnative English speakers did not.
Balancing Communication Needs
Interpreters changed the nature of interaction during interviews. Parents seemed hesitant to use sign language in front of the researchers, even to their children. Some were not wholly accustomed to using interpreters and spoke to the interpreter rather than the research team. The team discussed how they would navigate this during participant observations. Our objective was to observe the ways family members interacted and their relationships with one another. An interpreter would fundamentally change this dynamic. Us only signing would affect this dynamic too. We decided to compromise Steve’s access to communication during observations by forgoing an interpreter and matched each family’s style of communication as best as possible. Julianna and Allison served as amateur, covert interpreters when they could and we relied on their field notes for data. This created a larger amount of pressure and responsibility for both research assistants. At times, Allison and Julianna felt their skills were inadequate to provide Steve with sufficient access, but assuming this role was also fulfilling and made them feel proud.
Although the families that spoke languages other than English at home were fluent in English, there were communication difficulties. Sometimes, parents had a difficult time expressing what they meant. Other times, they had a hard time keeping up with the pace of conversations. Partners explained questions or statements to one another in their first language when English proved to be unsuccessful, just as we did in ASL. It was uncomfortable to acknowledge that these circumstances were not ideal, but they were ones typical of all our lives as minority language users. On the other hand, Allison and Julianna are majority language users and experienced what it was like to work in their second language, ASL. Both women valued this experience as a way to improve their ASL skills. Julianna felt it was humbling to experience what many of these participants and Steve endure on a daily basis as minority language users.
A great struggle for us was that families often did not include their children in conversations when they were in the room unless they were communicating directly with them. We interpreted to the DWD children what people said or what we were doing. We asked parents questions like, ‘Should we sign now since [child] is sitting with us?’ When this happened, the assumption of parents was that the children were not interested in what we were talking about or that the level of interaction was too advanced for them to participate. We followed the parents’ wishes against our own philosophical sticking points. During participant observations, we also noticed that parents did not consistently sign when their DWD child was present. We believe that it was not unusual for the children to feel like outsiders in their own home.
Unpacking Linguistic Hegemony
Although it is important not to glaze over the differences between forms of disempowerment by equating them (Samuels, Reference Samuels2002), there remains a utility to drawing parallels between various marginalised populations. Recognising similar mechanisms of power in action helps scholars identify ways we can improve universal equity. Singer (Reference Singer2016) discusses the benefit of interpreting minority language use through a lens of disablement. Disablement is how social context, rather than physiological characteristics, results in diminished ability for individuals with disabilities to participate in citizenry and achieve equity (Oliver & Barnes, Reference Oliver and Barnes2012). Whether a person is an ASL, Spanish, or Urdu user in the United States, as was the case in our study, or any other minority language, they experience a form of disablement because they exist in a social context that privileges English. The consequences of this disablement may be reduced access to a wide array of activities or services or a reduced perception of a minority language user’s competence, which has widespread implications. In order to participate in a majority able-bodied culture (read as English-using), a non-English user must attempt to align with the norms of the majority, which is rarely wholly possible and highlights their inability to do so. This ‘compulsory able-bodiedness’ (McRuer, Reference McRuer and Davis2010, p. 396) reinforces societal understanding that it is inherently better to be a member of the majority.
In special educational settings, non-majority language use and disability may be more the norm than not due to how disability may affect communication and because there is an overrepresentation of English language learners who receive special educational services (Artiles & Ortiz, Reference Artiles and Ortiz2002; Sullivan, Reference Sullivan2011). However, these settings are still primarily interpreted and represented in scholarship through normative institutional definitions, research methodologies, and standards of publication. In our reflexive journals, we identified some of the ways linguistic hegemony affected our positions, perceptions, and data collection, but these influences are difficult to detail in research reports due to publication word limits. Consequently, they were largely absent in our empirical manuscript. Readers will view our findings from their individual positions without the benefit of being informed about how compulsory able-bodiedness affected how we conducted the research or how it affects the reader’s reception of the findings. This skews the research and may contribute toward a continued view of people with disabilities through a ‘special’ or deficit-based lens. This leaves researchers with few options to affect positive change in special educational research, but to continue publicly discussing the implications of language and communication in research and to establish various protocols that help mitigate unintentional representations of linguistically marginalised populations through majority language lenses.
Key Takeaways for Special Educational Research About Managing Communication Variations
Participant checks every time
Misinterpretation and decontextualisation of data undermine the validity of research and compromise our promises to participants to represent their stories in authentic ways. Conducting research with participants or researchers with disabilities as well as those who use multiple languages increases the chances of communication errors. Researchers should feel compelled to conduct participant checks of the manuscript before submission for publication without exception. Furthermore, it is important that they describe to participants how to approach reading the manuscript. For some participants, this may mean highlighting places where the authors talk specifically about the participants, suggesting sections to read, essentialising portions of discipline-specific text, and ensuring that the document is screen-reader accessible.
Valuing humans’ proclivity to communicate
In our research, we found ourselves in varied and rarely ever ideal communication contexts. It would be easy to view this as a liability, but it behoves special educational researchers to shift away from the idea that normative communication equates to valid communication. The epistemes of students with disabilities are often rendered in atypical ways, and to value these students is to also necessarily value the ways they communicate. Extending this idea to all research constituents (e.g., researchers and parents) means learning to revel in communication messiness. Humans will find a way to communicate, and while researchers have an obligation to ensure research is accessible to the best of their abilities, they also have an obligation to be flexible and begin to learn how communication shapes the lives of participants and co-researchers. Sometimes that means permitting ourselves to exist in those less defined communicative spaces.
Conclusion
Doing research with students with disabilities or in special education more broadly requisitely includes consideration of people with disabilities as a disenfranchised population. Young people with disabilities are relegated to positions where they have very little power, which is compounded by their statuses as children. While institutional review boards contend with the issue of whether to consider students with disabilities as ‘vulnerable’, we assert that this kind of discourse places the onus of the problem on the students rather than the researchers. This aligns with common ableist notions that disability is inherently an individual and deficit-based problem rather than an issue of social positioning. In our experience, students with disabilities are resourceful, flexible, and resilient. It is researchers who struggle to ‘figure it out’. Therefore, researchers must develop methodologies that are self-surveilling, self-critical, and social-justice minded, not only for the benefit of the population, but also for the validity of their work. Without these checks, scholarship risks representing the views and needs of the able-bodied majority, which inherently skews the epistemes of people with disabilities.
In our study, we recognised our need to redouble our efforts to create research that serves the population with disabilities and seeks to continue the struggle for equity. Much of the scholarship about disability has been criticised as misguided efforts to help or cure people with disabilities, motivated by fear, pity, and assumptions of what it means to experience disability, and yet doesn’t consult people with disabilities or include them in the research process (Charlton, Reference Charlton2000; Oliver, Reference Oliver1992; Petersen, Reference Petersen2011; Shapiro, Reference Shapiro2011). To respond to warranted criticisms of traditional research ‘about’ disability as ‘a violation of their [people with disabilities] experience, as irrelevant to their needs and as failing to improve their material circumstances and quality of life’ (Oliver, Reference Oliver1992, p. 105), emancipatory paradigms have received due attention. Drawing on Barton (Reference Barton1996, Reference Barton2005) and Oliver (Reference Oliver1992), Petersen (Reference Petersen2011) defines emancipatory research methods as ‘empowering individuals with disabilities by employing the expertise of the researcher to collaboratively carry out the goals and aims of individuals with disabilities’ (p. 294). Scholarship that aligns with this framework must embody the three fundamental principles of reciprocity, gain and empowerment, and the involvement of participants in the research process as a way to create balance and ultimately share power between the researcher and the researched (Petersen, Reference Petersen2011).
While the above description of emancipatory research is important, it lacks breadth. The needs of reciprocity, empowerment, and involvement also extend to the research team. A salient component of emancipatory research is to appropriately respond to Charlton’s (Reference Charlton2000) mantra and book titled Nothing About Us, Without Us through the inclusion of researchers with disabilities and the voices of participants with disabilities or people in the development of the research. The researcher with a disability contends with balancing their own disabled voice and needs with those of the participants, which sometimes overlap but not always. Just as important, we understand that the marginalisation of an identification doesn’t exist in a vacuum, but instead exists in an interactional web of marginalised and privileged identifications. A truly emancipatory methodology includes an exhaustive account and regulation of how the identifications of all participants and researchers affect special education scholarship.
In this paper we exposed our bias as researchers. We admitted to subjectivities that during the course of the research made us uncomfortable. Our objective was to do something productive with our biases by identifying a list of specific practical applications that might assist special education researchers to mitigate the complexities we excavated (see Key Takeaways sections). These ruminations and recommendations focused primarily on conducting research with people who communicate in nonnormative ways in the United States (e.g., multimodal or non-English languages). However, we also understood the significance of gender and status in our work — between researchers and participants and among researchers. Our recommendations span a broad set of topics, because, as we have outlined, an emancipatory method that reflects social justice philosophy is necessarily multifaceted. Our recommendations are far from exhaustive, but serve as an addendum to the ever-evolving ways in which we feel compelled to approach our research in the special education discipline.
