Disability disclosure contains significant implications when considering democratic educational opportunities for students with disabilities in higher education. Especially for graduate students with disabilities, there is minimal research on their experiences with disability disclosure. In a collaborative autoethnography, two doctoral students with disabilities engage in a critical dialogue about how disability disclosure operates within everyday interactions. Through dialogue and praxis, our narratives highlight how acts of disability disclosure continuously construct the notion of disability, democracy, citizenship, and empowerment in higher education. In turn, critical reexaminations of disability disclosure may present insight into future directions that will ensure equal educational opportunities, attainment and achievements for all.
"Disability has always been constructed as the inverse or opposite of higher education" (Dolmage, 2017, p. 3). This is a particularly relevant and timely statement, especially with the current political climate concerning educational attainment, achievement, retention, and outcomes of disabled bodies. Since the passing of the American with Disabilities Act (ADA), it is estimated that across all U.S. postsecondary institutions, there are only 11% students with disabilities enrolled (U.S. DOE, 2016). While the ADA has provided legal protection against discrimination and "the promise" of access, little has changed across the landscape of academic culture to facilitate equitable opportunities for disabled bodies (Davis, 2011; Dolmage, 2017). As Dolmage (2017) states
We cannot recognize the foundations and future of academia if we are constantly dodging the idea of disability. Instead, educators have to recognize these very foundations and future as being built upon ableism, and as—literally—being built upon the bodies of disabled people. (p. 11)
Therefore, while legal educational access (e.g., disability services) is pivotal in increasing educational attainment and achievement among students with disabilities, there is a need to critically examine the persisting disconnect between academic culture and disability (Davis, 2011; Dolmage, 2011). Understanding institutional conceptualizations of disability is critical in order to facilitate structural changes within academic cultures when considering retention, access, equity, citizenship, and diversity.
To examine this disconnect between academic culture and disability, we focused on the problematic reality of disability disclosure in higher education. Disability disclosure is "a complex and ongoing process requiring decisions about who should know, why they should know, how to inform, what to disclose, and when to inform" (Valle, Solis, Volpitta, & Connor, 2004, p. 4). As such, the act of disability disclosure is personal and often dependent on an individual's own acceptance of self and disability (Kerschbaum, 2014; Kerschbaum, Eisenman, & Jones, 2017; Samuels, 2003; Valle et al., 2004). Disability admission involves making private space(s) public within everyday informal encounters (Kerschbaum, 2014). Accordingly, to Price (2009, 2011), this "kairotic space" is defined as "less formal, often unnoticed, areas of academe where knowledge is produced and power is exchanged" (Price, 2011, p. 60). This definition reflects the importance of viewing disabilities as not merely forms of barriers or accommodation issues, but also seeing how disability is contested and fluid in everyday settings. Reframing disability also acknowledges the importance of addressing institutional change among the cultural, social and symbolic spaces within higher education, and not solely physical spaces.
Disability disclosure provides a platform to disrupt the hegemonic ableist framework around disability, that is, as an individualistic issue that is easily resolved by technical accommodations (e.g., hearing aid, note taker, scribe pen, or screen reader). In spite of the persisting, overlapping themes seen among the postsecondary experiences of students with disabilities such as barriers, transitions, integration, faculty attitudes, intervention methods, accommodations, and self-advocacy (e.g., Cawthon & Cole, 2010; Garrison-Wade, 2012; Hadley, 2011; Lichtenberger & Land, 2010; Marshak, Wieren, Ferrell, Swiss, & Dugan, 2010; Quinlan, Bates, & Angell, 2012; Reed & Curtis, 2012; Shepler & Woolsey, 2012), the needs among these individuals with disabilities are greatly diverse. Therefore, when considering access, their needs do not solely align along the legal and technical parameters. In post-secondary institutions, obtaining access is dependent on the act of disclosure by the student as these institutions are not mandated to locate these individuals with disabilities. As a result, the students shoulder greater responsibilities to decide when it is appropriate or necessary to disclose (McGregor et al. 2016). While there is considerable empirical research of disability disclosure among undergraduate students (e.g., Blockmans, 2015; Cai & Richdale, 2015; Cesarei, 2015; Rocco, 2001), there is a dearth in research among graduate students with disabilities (e.g., Carter, Catania, Schmitt, & Swenson, 2017; Damiani & Harbour, 2015; McGregor et al., 2016; Stewart & Collins, 2014).
This paper seeks to engage in a "restless reflexive" (Titchkosky, 2011) process around discourses on disclosure in day-to-day interactions from the perspectives of graduate students with disabilities. Building towards an alternative reframe of disability and disclosure in academic culture, we entwined three conceptual frameworks—Disability Studies, Freire's (1970/2000) dialogue and praxis, and Mingus' (2017) access intimacy and liberatory access—to explore and illustrate how we engage with disability disclosure in our lived experiences. Together, these three frameworks form the liberatory humanizing intersectional lens that provides us a language to highlight the complex multidimensional nuances in disability disclosure within our narratives. Through a collaborative autoethnographic approach, we share narrative examples and moments to convey the significance of dialogue and praxis within the fluid dynamics of disability and disclosure in higher education. Utilizing a collaborative autoethnographic approach reflected what a liberating humanizing intersectional framework has to offer in shifting academic culture's perception and approach towards disability and disclosure.
The U.S. Department of Education indicates that 11.1% of the students enroll in postsecondary institutions are disabled (U.S. DOE, 2016). However, not all students with disabilities chose to disclose with disability services (Low, 1996; Prowse, 2009; Reid, 2013), and therefore, the percentage of students with disabilities is likely to be higher. When considering the statistical representation of students with disabilities, the following questions emerge: who are the students with disabilities? What are their experiences in higher education? How are institutions addressing student retention among students with disabilities? What aspects of the institutional culture are working, and what aspects need improvement? Across all of these questions, disability disclosure emerges as an influential component in students' experiences and their academic outcomes.
A well-established body of research examines disability disclosure in employment and legal contexts (Stewart & Collins, 2014). In higher education research, considerable scholarship explores disability disclosure within the following contexts: physical disabilities (e.g., Blockmans, 2015), invisible disabilities (e.g., Lingsom, 2008; Mullins & Preyde, 2013; Matthews, 2009; Stein, 2013; Thompson-Ebanks, 2014), learning disabilities (e.g., Cole & Cawthon, 2015), hearing disabilities (e.g., Bell, Carl, & Swart, 2016; Cawthon, Schoffstall, & Garberogolio, 2014), online classroom experiences (Terras, Leggio, & Phillips, 2015; Verdinelli & Kutner, 2016), staff perception (e.g., Venille, Street, & Fossey, 2014), Autism (e.g., Cai & Richdale, 2016; Davidson & Henderson, 2010), graduate students with disabilities (e.g., Alshammari, 2017; Barragan & Nusbaum, 2017; Carter et al., 2017; Collins, 2015; Damiani & Harbour, 2015; Stewart & Collins, 2014; Verdinelli & Kutner, 2016; Vidali, 2009), and faculty members with disabilities (e.g., Knight, 2017; Tidwell, 2004; Valle, Solis, Volpitta, & Connor, 2004). Furthermore, the definitions of disability disclosure offer insight into what lens is utilized in examining such phenomena. The construct of disability disclosure can pertain to the moment when a student discloses to receive accommodations and support (De Cesarei, 2014, 2015), the degree of willingness to disclose their disability (Bell, Carl, & Swart, 2016), a process of impression/information management or self-determination (Alshammari, 2017; Olgney & Brockelman, 2003; Thompson-Ebanks, 2014), a way to ease other individuals' discomfort with disability (Rocco, 2001), or as an indicator of how the individual perceives and interprets their disability (Blockmans, 2015; Kerschbaum, 2014; Rocco, 2001; Samuels, 2003; Valle et al., 2004).
Overall, the process of disability disclosure involves personal choices or statements that are dependent on how individuals situate themselves within the meaning of disability (Kerschbaum, 2014; O'Toole, 2013; Samuels, 2003; Valle et al., 2004). Disability disclosure can be seen as making what is private public within everyday interactions (Kerschbaum, 2014; Price, 2009, 2011), indicating that disability is not a static social-spatial construction (Price, 2009; 2011). As Valle, Solis, Volpitta, and Connor (2004) noted, disability disclosure is an ongoing process of decision-making about what, when, how, and to whom one discloses their disability. Alternatively, Venville, Street, and Fossey (2014) provided a description for non-disclosure, which is "perceived by the students as a means of controlling information and diminishing the power of the illness, and others, over the self" (p. 1175). In sum, disability disclosure is "not a singular event, not a once-and-for-all action but, rather, an ongoing process of continuously in a variety of settings and contexts, performing and negotiating disability awareness and perceptibility" (Kerschbaum, Eisenman, & Jones, 2017, p. 1).
Across the literature, the main reasons for disclosing one's disability are to receive assistance and accommodations, to gain legitimacy about one's disability, or to clarify aspects about their disability in a crisis or in the process of learning about one another (Blockmans, 2015; Cai & Richdale, 2015; Cesarei, 2015; Rocco, 2001). While it is customary to disclose in order to obtain accommodations, there are numerous reasons to not disclose, such as embarrassment, shame, stigmatization, institutional culture, negative experiences with peers and faculty, fear of discrimination, thinking they are not disabled enough, or wanting to be non-disabled (Blockmans, 2015; Cawthon, Schoffstall, & Garberogolio, 2014; Cesarei, 2015; Cole & Cawthon, 2015; Marshak et al., 2010; Mullins & Preyde, 2013; Thompson-Ebanks, 2014). Therefore, non-disclosure may stem from the desire to avoid being reduced from an embodiment of complex intersectional identities to solely a disability status. Also, due to negative perception of disability, students and faculty with disabilities tend to assimilate in order to maintain a positive image and ensure smooth transaction with able-bodied individuals (Alshammari, 2017; Blockmans, 2015; Cai & Richdale, 2016; Mullins & Preyde, 2013; Stein, 2013; Valle, Solis, Volpitta, & Connor, 2004). For instance, Alshammari (2017) discussed how "passing" (a form of non-disclosure) is to prove oneself worthy to gain access to the community or admission to a graduate program. In her circumstances, she opted to not to disclose, as the odds were too great. In order to pursue her dreams as an academic, she chose to pass (rather than disclosing) to avoid the risk of being discriminated against because of her disability. Hence, disclosure or (non-disclosure) becomes a form of "reactive action" (Bell, Carl, & Swartz, 2016, p. 7).
Even in online settings where students greatly appreciate the benefits of online learning (e.g., flexibility, time efficiency, ability to adapt the course to their needs, and having more control over the pace of learning), they still opt out of disclosing their disability to disability services and/or their instructors due to the stigma and to their desire to avoid being reduced to their disability (Terras, Leggio, & Phillips, 2015; Verdinelli & Kutner, 2016). Disclosure involves both negative and positive consequences (e.g., access to support and accommodations versus being marginalized; De Cesarei, 2014). Additionally, students with invisible disabilities may choose to disclose in order to ensure legitimacy for their accommodations or to avoid any misunderstandings or anticipated questions or negative judgments (Blockmans, 2015; Lingsom, 2008). Nevertheless, students with invisible disabilities have greater freedom (and control) in deciding when, where, and how they wish to disclose (De Cesarei, 2014; Stewart & Collins, 2014). For instance, Cawthon, Schoffstall, and Garberogolio (2014) observed that students with severe hearing loss are more willing to disclose than their peers with mild to moderate hearing loss. However, Olney and Brockelman (2003) emphasized that the degree of visibility of a disability is only one component in the disclosure process.
On the other hand, Venille, Street, and Fossey (2014) considered the perceptions of teaching and specialist support staff and their perceptions of student disclosure, in particular in those with mental health issues. Overall, the staff emphasized the importance of disclosing in order to obtain accommodations and support, especially at the initial enrollment. They acknowledged the correlation between receiving accommodations and support and positive academic success. They also contended that disclosure is an approach to counter the negative perception of mental illness. However, when asked if they were in the same situation, would they disclose? All of the participants indicated that they would not have due to previous negative experiences.
Alternatively, literature written by disabled bodies (e.g., Carter et al., 2017; Kaul, 2017; Kerschbaum, 2014; Kerschbaum, Eisenman, and Jones, 2017; Knight, 2017; O'Toole, 2013; Samuels, 2017) offers insights about disability disclosure in the context of empowerment, diversity, intersectionality, and ableism. Situating disability disclosure against the ableist backdrop of higher education reinforces the importance of understanding the relationship between academia culture and disability (Davis, 2011; Dolmage, 2017). As a catalyst, disclosure is a means to disrupt the entrenched systematic power structures and dynamics within the universities and colleges. Disabled bodies have been and continue to be excluded and marginalized from the public sphere in a multitude of ways (e.g., asylum, disability services, citizenship, and eugenics; Dolmage, 2017). As a result, disability is strongly associated with the need to be fixed or studied rather than as a source of knowledge (Dolmage, 2017; Kaul, 2017; Titchkosky, 2011).
By flipping the script, disability not only reveals the systematic implications of disclosure, but also stretches the boundaries and imaginations of what is disclosure. As seen in the literature, removing the conventional parameters enables a platform to engage with disclosure from the lens of systematic power, oppression, and social justice. Disability offers a deeper and richer understanding of disclosure while highlighting critical angles to consider, such as normalcy, ableism, consent, and vulnerability (Carter et al., 2017; Kaul, 2017; Knight, 2017; Mingus, 2011; 2017; O'Toole, 2013). For instance, Mingus (2011, 2017) considered the notion of consent in disclosure while discussing how forced intimacy shifts the labor, time, and energy upon disabled bodies to locate access, without holding able-bodied individuals accountable for their role in upholding ableist systematic oppression. Forced intimacy occurs when disabled bodies are expected (or even demanded) to share personal information with able-bodied people in order to have basic and safe access (Mingus, 2011, 2017). With disability, consent is no longer a given choice; instead, one must disclose in order to gain access, which often involves not mutual understanding but an imbalanced (and imposed) sense of power between the parties involved. As a result, forced intimacy is exploitative, exhausting, and violating. Mingus (2017) shared, "I learned how to simultaneously shrink myself and non-consensually open myself up as a disabled girl of color every damn day" (para. 3). As a result, Mingus (2011, 2017) contended, forced intimacy is part of the reason why ableism continues to flourish as it hinders society's ability to rethink and to see the transformative power of access and disability.
In a similar thread, Knight (2017) discussed the relationship between vulnerability and disclosure in democratic education. In the classroom, disability disclosure can become a tool to ignite a conversation around disability as part of the everyday process. This is significant as disability is often excluded from the curriculum or contained within the fields of special education and inclusive education. Disability disclosure could shift the traditional hierarchy between teacher (the depositor) and students (the receivers) towards an environment where all bodies embody value and knowledge, hence structuring an empowering environment. Furthermore, disclosure opens up the possibilities of all bodies beginning to understand not only their role, but the importance of collective accountability, within the complex web of power and oppression that flourishes within an academic culture (Carter et al., 2017; Kaul, 2017; Knight, 2017).
Furthermore, disclosure offers another platform to see the diversity within disability. "Not only disability but also gender, sexuality, race, and class play into these moments of transformation, and when we talk about disclosure, we need to talk about all of those sites of embodied social power relationships" (Samuels, 2017, p. 16). Thus, disclosure is a political act of resistance, empowerment, and solidarity, a way to challenge the myths surrounding disability, a form of access intimacy and liberatory access, and strategic and authentic ways of building communities of love, support, and activism (Carter et al., 2017; Knight, 2017; Mingus, 2017; O'Toole, 2013).
Situating our experiences of disability disclosure, we utilize Disability Studies conceptual framework, Freire's (1970/2000) dialogue and praxis, and Mingus' (2017) access intimacy and liberatory access. These three conceptual models enable us to build a liberating humanizing intersectional framework around disability and disclosure in order to disrupt ableism and preconceived notions of ability. Stemming from medical and institutional language and discourse, the dominant hegemony defines disability as a biological defect that needs to be fixed or as a personal tragedy (Barnes, Mercer, & Shakespeare, 1999; Davis, 1995, 1997, 2013; Goodley, 2010; Johnstone, 2001; Linton, 1998). Expanding the notion, Disability Studies contends that disability is a social, cultural, political, economic, and structural phenomenon (Ferri & Connor, 2006; Goodley, 2010; Johnstone, 2001). Shifting away from an individualized and medical conceptualization of disability, Disability Studies illustrates how social institutions construct what constitutes disability. For instance, physical inaccessibility is the disabling factor rather than the medical condition itself. Reframing disability as a social phenomenon enables us to critically reexamine disability disclosure as continually contested social and dialogic process that influences our everyday experiences and how we approach and shape the notion of disability.
To critically approach the discourses of disability disclosure, we draw upon Freire's (1970/2000) notion of dialogue and praxis. Freire (1970/2000, 1998) emphasized the significance of dialogue in developing critical consciousness, self-transformation, humanization, and liberation. As an epistemological inquiry, dialogue illustrates how critical reflection and praxis presents not only a means of connecting oneself to society, but also sees how dialogue cannot be merely an act of deposit or consumption (Freire, 1970/2000). Dialogue and praxis allows for "the reflection and action which truly transforms reality the source of knowledge and creation" (Freire, 2008, p. 100). Furthermore, Freire (1972) stated, "The intentionality of consciousness means consciousness is never a mere reflection of material reality but is a reflection upon materiality reality" (p. 99). Therefore, the process of becoming who we are as scholars and as individuals with disabilities is a direct result of praxis. Engaging in critical dialogue and praxis, we share the significance of disability disclosure within everyday lives, and its implications for empowerment, democracy, and citizenship (Freire, 1970/2000).
Mingus' (2011, 2017) concepts of access intimacy and liberatory access provide an alternative way of engaging with disability disclosure in the context of empowerment, democracy, and citizenship. Mingus (2011) argued that access intimacy is the heart of moving towards liberatory access and interdependence: "Access intimacy is that elusive, hard to describe feeling when someone else 'gets' your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level" (para. 4). Access intimacy is not simply about access but being in a place where one can begin from a place of complete vulnerability with no need to justify one's emotions, isolation, trauma, fear, and anxiety (Mingus, 2011, 2017). Mingus (2011, 2017) contends that access intimacy is the heart of liberatory access and interdependence. Access intimacy is where access becomes a tool for liberation.
Liberatory access is where the ideology of access shifts away from access as an unequitable transaction to where all bodies embody value and the focus is on interdependent connection, justice, community, love, and liberation. Both concepts reflect a reality where disabled bodies no longer have to shoulder the burden of access and engage in free labor. Instead, a collective accountability and relational respect of each other coexist. In this context, able-bodied individuals choose to participate in a disabled world rather than assuming disabled bodies will conform and assimilate into the able-bodied society. Therefore, access intimacy is interdependence in action (Mingus, 2011, 2017). Collectively, these three conceptual models formulate the liberating humanizing intersectional framework that we seek to confront and disrupt the trauma (all forms of isms – e.g., ableism, racism, sexism, etc.) we have experienced, along with envisioning the possibilities of collective liberation that build upon ideologies of interdependence.
As a methodological approach, autoethnography entwines lived experiences, ideologies, and sense of self to tease out alternative understandings about society and culture (Anderson, 2006; Chang, 2008; Denzin & Lincoln, 2000; Griffin, 2012; Hesse-Biber & Leavy, 2006; Hughes, Pennington, & Makris, 2012; McIlveen, 2008). According to Ellis (2013) an autoethnography entails "that we observe ourselves observing, that we interrogate what we think and believe, and that we challenge our own assumptions… making conscious decisions about who and how we want to be" (p. 10). An autoethnographic approach enables a first-person narrative of interweaving theory and lived experiences to present different ways of knowing that may not be readily available or accessible, on topics that may be perceived as taboo (e.g., anger, ableism, racism, mental illness, or sexual abuse (Chang, 2008; Griffin, 2012; Hughes, Pennington, & Markis, 2012; Jones, Adams, & Ellis, 2013; McIlveen, 2008; Tomaselli, Dyll, & Francis, 2008).
In the spirit and commitment to a liberating humanizing intersectional framework, we progress towards a collaborative autoethnography through friendship and dialogue about disability disclosure. In collaborative autoethnography, multiple researchers use their own experiences, individually or collectively, as the location of exploration to produce/present a complex and holistic understanding of a particular phenomenon (Corroto & Havenhand, 2015). This process involves an in-depth reflection into each of our hearts, bodies, and minds as past experiences are drawn from and how those experiences of disability disclosure impacted our academic, social, physical, and inner lives (Chang, 2013; Ellis, Adams, & Bocher, 2011; Guyotte & Sochacka, 2016). Our data collection occurred through individual writing and subsequent sharing of our separate narratives, archival materials, and self-analyses through skype, email, and text correspondence. This process of internal and external dialogue provides avenues to co-construct meaning in our experiences, which contain and highlight vulnerabilities associated with our disability disclosures (Chang, Hernandez, & Ngunjiri 2015; Ellis et al., 2011).
Writing is an inward expression of our outer and external experiences. It was Dewey who wrote about art "as experience through which the process of engaging with/in the arts nurtures spaces where meaningful and aesthetic experiences might occur" (Guyotte & Sochacka, 2016, p. 7). In our process of collaborative autoethnography, we endeavor to connect our own emotions, specific experiences and inner subjectivity into collective meaning (Chang, Ngunjiri, & Hernandez, 2013). Furthermore, our descriptions are thick, as we bring the details of our disability disclosures separately and then together (Geertz, 1973; Guyotte & Sochacka, 2016). This collaborative process has been rich and rewarding, and in telling our separate respective stories, it is our hope to create connection through our vulnerability and create deeper levels of understanding of the process of disability disclosure. In our exploration of disability disclosure, we share first-person narratives to illustrate how disclosure operated, and continues to operate, within our everyday lives. The first narrative, "The Journey of Authentic Disclosure," explores Lisa's disclosure encounters with two professors and her DS cohort. In the second narrative, "Tension and Resistance Within Disclosure," Holly uses three different moments in three separate contexts to examine the nuances of disclosure within everyday settings.
The Journey of Authentic Voice and Disclosure: Lisa's Narrative
The formation of identity is a complex construction. The lens I see myself through today may not be the lens of tomorrow, as disability identity is fluid and ever evolving, much like the use of person-first vs. identity-first language. I prefer person-first language as I identify as Lisa first, and then as a woman with Asperger's. I even find the word "with" problematic. I am an individual who happens to be along a wide spectrum called Autism. In regards to my learning disability (LD) diagnosis, it is also part of who I am, as it played a much greater role in my struggles during my undergraduate years and experiences. My own perception of disability is evolving. Presently, if I use a label to define myself, it would be a woman with Asperger's, even though the DSM-5, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, has collapsed that label into autism spectrum disorder (American Psychiatric Association, 2013). I do not like the term "disorder" and the connection to the medical model of disability. My way of being and thinking in this world is not a disorder.
As a disability scholar and a Ph.D. student, I ask myself, how is my work authentic? Further questions include: how or do I disclose my disability? Can I hide behind a wall of invisibility? All these questions concern this thought—disclosure is a personal choice. However, when there is an essential learning need to use and apply legally granted accommodations, the words personal choice become a critical component to the proving of learning acquisition. My choice to disclose to Professor Alison Williams 1 changed my perception of my disability.
One Sentence Changed My Perception
In the Fall of 2005, I was diagnosed with a learning disability in perceptual organization. During spring of 2006, I experienced learning challenges in my algebra course. My first attempt in this course resulted in a failure and a breakdown in my confidence. Upon the suggestion of my academic advisor, I chose to retake the course with Professor Alison Williams rather than with my previous teacher. After two weeks of struggling, I walked into her office during office hours. I stated, "I am an audio verbal learner and you are a visual math teacher. Can you help me learn?" I told her about my LD. "Lisa, you don't have a learning disability. Your brain thinks and processes differently. We just need to figure out how." I still had a LD, but her perspective changed my self-built perception.
Alison changed my life by challenging my belief that I was less than and not capable of learning. This transformed the course of my education. Her focus on my strengths paved and created a model of learning skills that I still employ today. Alison believed in me before I believed in myself. This gesture, as spoken by Freire (1998):
Of the teacher affirmed in me a self-confidence that obviously still had much room to grow, but it inspired in me a belief that I too had value and could produce results-results that clearly had their limits but that were a demonstration of my capacity, which up until that moment I would have been inclined to hide or not fully believe in. (p. 47)
As Alison mentored my math journey, she taught me true learning occurs when we as individuals become authentic with ourselves.
Our genuine and highest learning capacities result as we reveal who we are as individuals. The veil of perceived normalcy dissipates when I continue to disclose who I am. Disability moves freely in and out of my life like a river that has found a home. In disclosing my disability, I break down the walls and assumptions of perception. In revealing, I bring my educational experience of truth to the table. If I stay silent as a researcher and as a scholar, old perceptions become rooted in misperceived constructs of disability, for in silence nothing can change. In sharp contrast to my experiences with Alison, another professor stands out in my experience as an undergraduate. The difference between the two is in stark contrast and they represent opposite ends of student support and caring.
Dr. Evil: When the Invisible Becomes Visible
With a fair amount of fear and trepidation, my feet carried me from the parking lot to my Professor's office. While searching for her office, the elevator ride seemed to take hours. This was the point in the semester that always filled me with dread and anxiety. The moment where I had to pull out my accommodations letter to grant me extended time and a quiet space to take my exams. I always wondered, could it possibly be called anything but these initials, DS, disability services? I wished I could take my exam in class like everyone else. However, I did need extra time and quiet. Dr. Evil, as my undergraduate self subsequently named her, was sitting at her plain Spartan wooden desk with the door halfway open. Her office looked like it could have belonged to anyone as it was devoid of personal touch, even after 20 plus years of teaching. I had made the necessary appointment as her syllabus had stated on our first day of class.
As she looked up from her desk, her body language indicated I was taking her away from her work. A feeling in the pit in my stomach rose—the moment when fear takes over and one wishes to simply excuse oneself and run far away. However, I needed her signature, otherwise the DS office would not allow me to make my much-needed appointment. I introduced myself and for the briefest moment, I wondered, did she recognize me as the student who sat in the first row almost directly in front of her, always scribbling down notes as her fast-paced quiet voice barely carried to the rear of the classroom? This was the moment when I feared her perception of me as a student would shift, the instant where the invisible becomes visible. As I spoke, my voice seemed to take on courage, which I hoped would not change her ability to see me as a competent student. "I have a letter to show you and a paper for you to sign for the DS office." Once those words are spoken, recall becomes an impossibility. Her voice revealed her condescension, complete irritability combined with underlying anger and disgust. "Oh, you are one of those students whose extra time gives you a better chance of earning a better grade in my class."
In this moment of marginalization, I experienced the full impact of being othered. I later learned there was a word for this experience—othering. SooHoo (2006) stated, "Othering refers to the process of marginalizing individuals for a particular social characteristic that is embedded within the political infrastructure of inequality" (p. 7). The power my professor held over me stood like a wall between us. By law I had the right to my listed accommodations; however, the silence stained the perception I held of myself as soon as those words trailed out and landed upon the walls of her office. I felt like all the oxygen was displaced from my being. I could feel tears of shame and stigma stinging and being held in behind my eyes. I vowed I would not let this woman see me cry. I would not offer her any moments of insincere apologies.
As those words escaped from her mouth, silence hung in the air like the dangling skeleton standing in our classroom. I was speechless; her vindictive tone combined with the look of disgust filled me. In this moment, the power she held over me was fully evident. While I realized I had my full ADA rights as a student with a learning disability to have my paper signed, I was not asking to be humiliated that morning. She looked at me one final time while pulling a pen from its plastic cap and signed my paper. I thanked her, barely mumbling those words, and fled her office. I do not recall the elevator ride or how I managed to get to my car before a river of tears finally escaped. I sat in my car experiencing profound feelings of marginalization and stigma. I had nothing but emptiness inside, and then anger as scalding as lava coming from the earth's core. I just knew I was never going back to her office or to ask for any help. From that moment forward, she became Dr. Evil to me and her real name has fully escaped my memory. I can recall every teacher's name beginning in first grade to my present.
Inner Disclosure Fears and Questions
My fear of disclosure wrapped my inner self like an invisibility shield drawing possible onlookers away. I thought if I did not reveal my invisible identity, I could effectively 'stay in the closet' while passing and remain undistinguishable in classrooms with my peers. The phrase coming out to refers to whom one is telling and sharing, this revealing is a single event (Samuels, 2003). This is the process of coming out either to one single individual or to a group, "usually refers to the time that one first realized and comes to terms with one's own identity" (Samuels, 2003, p. 237).
I could selectively disclose to professors. I could hope observant faculty would not notice my style of asking questions in my interchanges. While in class, I could hope my classmates also failed to not notice how my responses to classroom discussions were different. My LD diagnosis always bothered me like a thorn leftover from a rose whose intent was to help and provide me accommodations. Whatever the intention, it kept pressing upon my internal feelings of otherness and shame. By staying silent, I thought I could protect myself from unwanted stares as to why I asked the questions I did in class, or the laughter which filled the seats behind me in my old undergraduate classrooms.
After I defended my thesis (Boskovich, 2015), and completed my master's during the spring of 2015, I wondered do I disclose my newly discovered Asperger's? Did I really need to share this with anyone else? Could I remain silent and invisible? Did I pass? I kept quiet among my peers as a graduate student. I felt fear from my undergraduate class experiences. My silence bought me space. This silence, I think, now reinforced my fear. I was terrified my entire Ph.D. cohort would not accept me. I stayed in silence and protected myself. In reflection, that decision was the best choice at the time. I stayed in my chosen closet wrapped safely inside the walls of my mind.
During my first semester in the Ph.D. program, an opportunity emerged in my DS course, and I decided to disclose. In class, as a DS cohort of four, we were given options to select readings from The Disability Studies Reader by Davis (2013). I chose the article, My Body, My Closet, Invisible Disability and the Limits of Coming-Out Disclosure by Samuels (2003). While reading the article, I was struck by the honesty her participants expressed in having an identity that is worn on the inside. Hiding takes away pieces of one's soul, to feel invisible strips away one's connection to the world; and passing or perceived passing created inner struggles along the road of my own acceptance. To experience stigma affects the soul of self, a breaking down, a future agenda of hiding, for the world is often cruel and unyielding to those who hide.
My chosen silence of Asperger's wrapped around me like a coat. I wanted to determine time, place, and condition of becoming visible while walking out of the closet of passing and invisible disability. Often our choices are decided as we keep silent and withhold a part of our identity until we reach a critical mass, and then an opportunity opens that allows us to choose to grasp the door handle and walk through. This is a threshold moment, as once our words are spoken, we cannot retreat, and we cannot use silence as sanctuary.
After reading Samuels (2003), I knew I had to write on this topic; it was time. In class, we took turns sharing our reflection papers. My DS peers listened as I disclosed my hidden Asperger's identity. In my claiming of Asperger's I never viewed it as a disability. Asperger's included the best parts of myself, the parts I loved and embraced. I saw my Asperger's as integral to self, part of me like the color of my eyes. With my LD, I viewed myself as less than and not capable of learning like my peers. I internalized marginalization and otherness. With Asperger's, I embraced my uniqueness. In contrast, I saw my LD as extension outside of self. In disclosing Asperger's to my DS cohort safety replaced fear. My DS peers were caring and supportive. However, I declined to disclose my Asperger's with my entire Ph.D. cohort. To this day, I still respect my choice of silence. With any period of growth there are liminal moments, especially in those times when the honoring of self is vital. I find it much easier to be a guest speaker and present to a larger group than to reveal to those who sit beside me in my Ph.D. classes. The cloak of my Asperger's disclosure is layered and continues to evolve as my own acceptance grows through time and revealing experiences.
Voicing Tension and Resistance Within Disclosure: Holly's Narrative
From the location of oddballness, I continuously search and create spaces of fluidity, complexity, and intersectionality. From a young age, as an oddball, I learned how to navigate across the spectrums of social differences, whether it was race, disability, gender, language, or class, while never truly finding a place of belonging. However, as a result, I am able to transverse across multiple realms, and adapt accordingly to the boundaries (e.g., Asian, Asian American, or Korean Adoptee or d/Deaf, hard of hearing, or hearing) as a social chameleon (Pearson, 2010). While at times, being an oddball is lonely, I embrace this positionality as the tensions, contradictions, and ambivalences between boundaries present opportunities to access, explore, and convey the complexity within identities, lived experiences, and the relationships between self and society (Bhabha, 1994). In turn, tensions, contradictions and ambivalences have led me to seek alternative ways of expressing and representing the intersectionality, complexity, and fluidity of identities and lived experiences within the social-spatial-historic interactions in order to disrupt the hegemonic binary worldview that reduces humanity into islands of isolations. It is within the location of oddballness where fleeting moments of connection, resilience, and solidarity reemerge, and continuously shape my worldview and pedagogy.
When considering the "dances" of disability disclosure, a symphony of different musical notes emerged. Some were high pitch notes, while others were medium pitch notes, and then finally a thud, a foreboding sound dropped off yet lingered within the space. Thinking about disclosure raises the following questions—what I am I willing to disclose in a heartbeat? What am I not willing to disclose in a heartbeat? Sharing my experiences about traversing the boundaries of hearing and d/Deaf boundaries feels fairly natural with a slight degree of hesitancy. Perhaps this is partially due to the years of schooling that disclosing translates to being able to receive special accommodations, but at the same time, these accommodations are labeled as special. Fidgeting around the edges, I find myself not wanting to be readily identified or labeled as I detest my entire being reduced to a label—"the disabled person or the deaf girl."
While thinking about disability disclosure, my thought drifts then focuses primarily on the word disclosure. From an intersectional and fluid lens, disclosure cannot be associated to a singular identity. With my Korean Adoptee (KAD) identity, the disclosure process feels mostly forced with clear sense of purpose. Similar to trying to throttle a semi-jammed door open, I make a point of not only disclosing my KAD background, but also correct anyone who attempts to correct me by indicating my options are either to be Asian American or Korean American. Too often, transracial adoptees' experiences are silenced and absent. To be intentional about my disclosure is to shout to the world that transracial adoptees' experiences exist and must be taken into consideration. Alternatively, I share my Alaskan identity freely and joyfully and with great pride. Then, there are aspects I wish to disclose, but I do not know how because of the silence shrouding and containing it. Dwelling on the disclosures that I wish to engage, but do not know how, the following questions nudge their ways to the surface: What can be gained if we teach how to disclose? What can be learned if we disclose? What can be changed if we disclose? Exploring these questions, I draw upon three different moments as focal points.
An Inadvertent Moment
In a room with white walls and windows along the left side and chalkboards along the front, multiple rows of long tables occupied the space. Apprehensively, as I entered, I scanned the room considering where I should situate myself. As I walked down the aisle, colleagues took seats one by one, and I found myself sitting in the middle of the second row from the front of the room. At the beginning of class, the instructors verbally asked us (the students) to introduce ourselves to the rest of the class. At the time, I did not hear the all of the instructions, thus triggering a sense of panic as I was not certain how to proceed. Seeing the heads turning towards me, I consciously reminded myself to smile as I gave my name and my discipline emphasis.
At this point, I faltered due to uncertainty of what additional information I needed to provide. As I scanned the faces staring at me, as an attempt to tease out additional cues, I adversely blurted out, "Oh yeah, I am hard of hearing. Wanted to let y'all now so you won't view me as a byotch." [This is not verbatim; a statement that conveys the essence of what I stated at the time]. After a pause, the room erupted in laughter. I found this bewildering as the reaction caught me off guard. I consciously masked my bewilderment by arranging my face into a slightly amused expression as I laughed along with my peers.
This moment of disclosure, a moment of sheer fumbling awkwardness, was the first time I intentionally disclosed my disability before an unfamiliar audience. Growing up, I was aware of the subtle changes in individuals' expressions, language, and tone of voice as they learned I had a disability. In their eyes, I disintegrated slowly into lesser than human as they began to talk to me as if I was a child, to roll their eyes and sigh in an exasperated manner whenever I asked them to repeat what they said, and to watch the person walk away when they did not want to engage with me any further. Alternatively, I would be showered with compliments of "What?! No! You do so well! I wouldn't have known if you hadn't told me! You are amazing! So smart!" In both situations, I am no longer simply a being, but now I have been reduced to an inspirational token or a location of avoidance and irritation. Continuously encountering these kinds of cues informed me early on that there is no merit in disability disclosure.
The Stillness in a Moment
Shifting to a different course and semester, glancing around the room, I explained that I wished for them (my peers and instructors) to take a moment of silence, look over the images and text, and pass the card one by one to the person sitting next to them as they moved on to the next card. To the person on my left, I gave a stack of drawings – a collection of 28 drawings on 5 x 8 white index cards. With the exception of two cards, the cards contained drawings and/or printed text. The two cards that did not have drawing had printed colored images. These drawings presented an evolving narrative of my positionality. I shared that while my childhood was consumed with language acquisition, I did not feel different until college, when my racial identity became my defining identity marker.
A sense of bewilderment grew as I struggled to understand the perception and assumptions that categorized my body as "other." No longer was I simply Holly, instead, individuals felt the need to define what Holly was. This need was reflected in their persistent probing of where I really came from. This violent reduction of my body as a "check off" the box instilled a sense of fragmented alienation. As I struggled to hold tightly onto the fragments of myself, I delved into the realm of narratives, arts, and language to locate answers. The answer I found was this or that: an entrenched silencing force manifested in the shape of binarism that persisted across all literature. The silence enveloped my being, leaving me to sink into this abyss of echoing numbness. As a means of retaining hope, I turned towards physical pain, which I revealed in the drawings—a forearm slashed in multiple locations. This was the first time I visually disclose a period of darkness and pain that manifested into physical cuts on my left forearm. While I am well aware of the stigma around cutting, in the process of deciding what to share, I realized I could not leave these moments out as they greatly influenced my present worldview.
As the cards travelled around the room, a weighted silence enveloped the whole space. By asking my peers to take a moment of silence as they looked over the drawings, I had hoped to illustrate how the implications of silence weighed greatly on one's well-being. This is not to imply silence is inherently negative, but to understand its meaning and influence involves consciously situating and engaging ourselves, whether it is uncomfortable, peaceful, inquisitive or angry, with the presence and role of silence, especially in a world that is consumed with visual and auditory distractions. During the process of passing the cards, the climate gradually filled with awkwardness, understanding, questioning, impatience, and patience. For me, it was as if I had been holding still for a long time and finally had a chance to stretch. As the last card arrived in front of me, the delicate moment of silence was erased by the sound of applause.
A Serendipitous Moment
Fast-forwarding a few years to a course focusing on identities, diversity, and social justice, starting off with a short YouTube video of my hometown, I shared with the students what it was like growing up in Alaska. Shifting to pictures of my family and friends, I introduced multiple families that I am a part of: my intimate family, my best friend, and my cohort. I also shared different locations that I have lived—across the US and internationally. From here, I delved into what it was like growing up hard of hearing/deaf and growing up signing and talking. I also discussed my struggles with what it means to be Asian/Asian American, and how I approached becoming more Asian by forcing myself to eat kimchi until I loved it, perfecting my chopstick skills, absorbing Asian literature and current Asian politics, and studying and imitating behavioral traits I observed among Asian/Asian Americans. I also discussed my growing transition towards my personal to political choice in embracing and disclosing my KAD identity.
I also shared that this period was one of my most painful as I struggled to stay afloat in the abyss of numbness and darkness. As I continued to search for my voice among the narratives and attempt to mold myself to what constitute Asian/Asian American, my sense of self gradually splintered—similar to a rock hitting a windshield and the initial impact gradually cracking across the surface. As an attempt to contain my disintegrating sense of self, cutting helped coping with numbness, depression, and isolation. The act of cutting reflects the painful realities of being reduced to a singular self—a crumbled ball cast away in disregard. The pains of being silenced, ignored, invalidated, and numbed to the point I could not cry or be angry. During that time, cutting was an act of resistance against the numbing and dark forces. During this revelation, I did not go into great detail, as it was unfamiliar territory. I did not talk about how I wore gothic sleeves to cover up my cutting. I did not talk about how I went about the process of cutting. I did not talk about how therapists downplayed what was going on with me by telling me I would get over it eventually. No room for dialogue, no room for emotions. Just a dead thud.
Originally, my intention for the presentation was to illustrate that each one of us is a complex being embodying multiple identities; hence, we cannot be reduced to a singular identity. I also wanted to demonstrate how identity is not solely based on social categories of race, class, gender, sexuality, religion, disability, and nationality. Instead, identity is a notion that can be defined and formulated from a wide array of descriptors: introvert, foodie, hipster, old school, happy, etc. However, as I began to talk about cutting, I realized the intent was to bring pain to the table when considering diversity and humanity. I wanted to draw pain and cutting into the spotlight. I wanted to open up a space for taboo topics that are ignored, avoided, and tiptoed around because pain is what makes us human, what we all have in common (Kafer, 2016; Valente 2017). I was done with feeling ashamed for engaging in activities of self-harm. I was done being silent about cutting. It is part of who I am. I embrace my scars boldly, not with shame.
As I spoke, I could hear and feel my pain as it radiated around the room. I looked directly at each of the students as I spoke. I watched their facial expressions as I spoke—a mix of confusion, uncertainty, understanding, neutrality, and shock looked back at me. The presentation ended with an emphasis on how I am not just an Asian, just a disabled person, or just a girl, but instead, I am an embodiment of intersectional identities—some that were given, some that I adopted. When the class opened up for questions, there was a sense of unsettledness. Not one student asked or commented about my cutting experiences.
As the students left the class, filled with a sense of jitteriness and empowerment, I wondered what the students had absorbed. A few weeks later, I received my answer. In their final projects, the students shared, verbally and/or textually, who they are, including painful moments they wanted to disclose. I was flooded with emotions, as I had not expected this level of access to intimacy. The students were not asked nor expected to share this level of intimacy. They had chosen to do so for unknown reasons. The process of disclosure opened boundaries that we may normally reinforce, whether out of necessity or desire, and presented fleeting moments of connection and solidarity.
Traditionally speaking, in educational settings, disclosure is justification for access, whether for disability services, accommodations, or legitimacy about a disability. Engaging in the process of "restless reflexive" (Titchkosky, 2011, p. 15) indicates otherwise as a multitude of forms of disclosure emerges. Disclosure is not merely a static transaction of access between two parties; instead, it is a process of implications that manifest in myriad ways that can be physical (e.g., twitch, avoidance of eye contact, or change in vocal pitch), socio-spatial (e.g., avoidance of certain social situations or individuals, or relocation to the back of the room), and emotional (e.g., sadness, anger, confusion or relief). Similarly, with disability, disclosure is a complex multivariate and layered phenomenon (Matthews, 2009). As the social model demonstrates, disability is not merely an individual pathological condition; but instead, disability is continuously constructed through multiple lenses (e.g., social, cultural, economical, political, spatial, and structural; Ferri & Connor, 2006; Goodley, 2010; Johnstone, 2001). Therefore, disclosing is "not an event, but a highly-personalized process, subject to a multitude of ongoing factors, and always without finalization" (Valle, Solis, Volpitta, & Connor, 2004, p. 15). Furthermore, disability disclosure involves multiple elements (e.g., comfort level, timing, contexts, institutional culture, supportive environment—or the lack thereof, motivation, and degree of self-determination; Olney & Brockelman, 2003). Hence, the reaction to one's disclosure may differ depending on the person's demographics, timing, location, past experiences, future expectations, and their understanding of the disability and their understanding of self (Lingsom, 2008).
Across campus spaces, disclosure and its meanings are continuously contested, negotiated, and constructed between multiple parties. Reframing schools as social and political institutions that contain and control discourses about disability and disclosure (Valle, Solis, Volpitta, & Connor, 2004) raise questions of how institutions and departments' cultures and policies socialize their students in approaching the disclosure process. Presently, disclosure is currently contained around obtaining medical documentation to legitimize one's medical status in exchange for accessible services in the classroom setting. Furthermore, in a symbiotic relationship, the dominant narrative of disability reinforces the discourse around disability disclosure as a conversation that is mandated due to policies or to legitimize one's abilities as a student. Hence, students are socialized to think no other contexts exist where it is necessary to disclose one's disability beyond disability services and classrooms. Upon further considerations, examinations of institutions and departments' roles in the socialization process of disability disclosure provides insights in what changes is needed—especially in the context of conveying and translating diversity, spatial-social justice, inclusion, and accessibility across the landscape of higher education.
The last statement raises critical questions about when and how does one address disclosure? When is the time to do so? What would the higher education culture look like if disclosure was built into institutional and departmental curriculums, cultures, policies, and social spaces? "Narratives of disclosure often explicitly respond to those cultural narratives, the ones 'everyone' expects you to tell" (Kerschbaum, 2014, p. 67). Language is a powerful force, as an entire group can be characterized by a single word, or a single word can be loaded with multiple meanings, such as disability (Valeras, 2010). Alternatively, self-disclosures are "highly fraught and often contested. Deciding to openly talk about disability is not always an easy decision to make" (Kerschbaum, 2014, p. 56). For instance, for me, Lisa, after my first exam in Dr. Evil's class, I knew I needed to use my accommodations. I was aware that I would have to have "the disclosure conversation." The disclosing of my disability was a decision I made with anxiety. In order to take care of my academic needs, my invisible disability would become public between Dr, Evil and me. However, these locations of contestation lead to new insights and considerations (Bhahba, 1994; Kerschbaum, 2014; O'Toole, 2013).
For instance, Kafer (2016) contends access is not merely about physical or technological accessibility, but it is also a location of self-care and self-exploration, as disclosure is an act of locating oneself "in relation to the lived disability experience" (O'Toole, 2013, para. 5). In this context, disclosure as access involves structuring spaces for individuals' traumatic experiences (Kafer, 2016). The process of disclosure can involve traumatic and violent moments as it is risky to challenge the status quo that "seeks to silence a minority for the sake of keeping comfortable the majority" (Valle, Solis, Volpitta, & Connor, 2004, p. 13); thus, disclosure involves a personal and professional cost (O'Toole, 2013). While it is vital that the disability/crip identities, communities, and history are celebrated, trauma, anxiety, pain, violence, and disclosure must also be accounted in disability/crip narrative (Kafer, 2016; Valente, 2017). For me, Holly, revealing my cutting past involves a personal and professional risk, but at the same time, disclosure can be rewarding as this structures potential spaces of healing and openness. Furthermore, accountability emerges as I consciously choose to cease avoiding or censoring difficult/taboo topics. Therefore, as noted by Kafer (2016), "Given such histories, what are the effects on, and what are our obligations to, the people we disclose to in our classrooms, our conference rooms, our conversations?" (p. 4). This raises the critical question: is disclosure about being ethically accountable (or obligated) when aware of the implications of remaining silent?
O'Toole (2013) emphasized moving towards public disclosure of disability while critically addressing the problematic implications of nondisclosure. While it is important to situate oneself with disability, it is also valuable to publicly acknowledge one's relationship with disability among the disabled community (and the field of Disability Studies), otherwise one is reinforcing the normalcy of nondisabled and the ableism within nondisclosure (O'Toole, 2013). Instead, to publicly disclose one's relationship with disability presents opportunities for building connections and communities (Mingus, 2017; O'Toole, 2013). As Siebers (2013) stated, these are spaces to "win tangible benefits freeing them not only from the violence, hatred and prejudice directed toward them but also providing them with both shared experiences to guide life choices and a community in which to prosper" (p. 281). Disclosure, in particular about pain and trauma, provides access to engagement rather than opportunities for protecting or shielding one another (Kafer, 2016).
In both narratives, we highlighted the different ways disclosure around pain and trauma opens the opportunity to challenge and shift one's worldview. For me, Lisa, my experiences of disability disclosure opened new pathways of learning for all parties involved. With Professor Alison Williams, disclosing my LD offered and Professor Williams and me opportunities of new learning experiences. During her math lectures, Professor Williams expanded her teaching style to include specific steps I (and the rest of the class) used in learning how to understand and solve algebraic equations. She shifted her teaching style as a result of disability disclosure. This provided an engagement with a professor I had never expected. Because of taking the risk to disclose, my fellow students and I benefited. Disclosure is risky, however; without taking this chance my ability to learn Algebra and then Statistics would have never occurred. Disclosure offered Professor Williams and me multiple opportunities for growth that impacted both of their lives.
Similarly, for me, Holly, revealing the intersectional intimate experiences of what it meant to grow up as an oddball, shifted and disrupted the assumptions around what constitute an adoptee, to be a cutter, to be a female, to be someone who grew up in Alaska. Bringing these experiences to the open is risky, but at the same time, disclosure becomes a catalyst towards potential access intimacy that allows each other to collectively shift our paradigm and worldviews at our own pacing. Simultaneously, disclosure reflects what is similar among each other while reflecting and valuing our quirks, uniqueness, and differences. Disclosure is a tool of liberation that is invested in the diversity of multi-dimensional knowledges, backgrounds, and pedagogical values. Therefore, for both of us, disclosure is about building accountability around a culture of interdependence. Therefore, the institutionalizing and normalizing of disability disclosure contributes to a limited imagination of the roles of disclosure in facilitating democratic education in higher education.
In response, shifting to the context of graduate students, we argue the imprinting of the institutionalization of disclosure is in discord with a graduate curriculum that trains and expects graduate students to embody the position of scholars-leaders and the ideologies of educational democracy. In Carter et al. (2017), Sam noted:
Disabled graduate students constitute a paradox that academia is trying to assimilate – either through erasing our disabilities in order to rightfully include us as able or by using our disabilities as justification for excluding us as unable. … moreover, graduate students exist in a liminal space within the academy; we are classified as students and as university employees/staff. We're a category that blends/exceeds the employee/student binary; thus, the resources, accommodations, support we need are often hard to acquire or do not exist." (p. 97)
In other words, we, multiply-marginalized, disabled bodies, are the unexpected guests in higher education, which clashes with idealized notion of what constitute a graduate student, educational democracy, and academic scholarship. As Dolmage (2017) noted to remain silent is to ignore the weighted history of ableism built into the foundation of academia culture. The cycles of ableism continue to churn and flourish within higher education institutions' culture, and disabled graduate students are often left in a vulnerable position as they transition into the role of scholar-leaders within a culture that values discipline, restraint, productivity, and autonomy without the necessary resources (Carter et al., 2017). Additionally, the hegemonic culture around disclosure fosters further alienation (on a personal and an institutional level) rather than building communities of self-love and self-care as seen in our cases: Lisa ~ after I disclosed my disability to my professor, I felt cast aside in her class, even though I sat in the first row, I became invisible to her, a nonentity; or navigating the spectrum of oddballness where I, Holly, am never truly at home anywhere, which at times can create an intersectional abyss.
While, in addressing disability disclosure, different objectives have been identified, recommended, or implemented such as being consciously attentive to the needs of disabled bodies in higher education (Carter et al, 2017; Henning, 2007; Tidwell, 2004), which includes developing greater awareness and understanding of the different needs across the disability spectrum, and how each disability influences day to day life and academic success (Mullins & Preyde, 2013; Stewart & Collins, 2014; Thompson-Ebanks, 2014). This includes increased transparency of the intent of disability services, multiple opportunities to develop self-advocacy and self-determination, and implementation of universal design for learning (Cole & Cawthon, 2015; Henning, 2007; Matthews, 2009; Mullins & Preyde, 2013; Stein, 2013; Terras, Leggio, & Phillips, 2015; Thompson-Ebanks, 2014; Tidwell, 2004; Venille, Street, & Fossey, 2014). While technological and physical access are important, institutions of higher education need to facilitate and sustain inclusive and affirming environments, in which disability is not viewed as a stigma, but as another form of difference along the spectrum of diversity and multiculturalism (Bell, Carl, & Swart, 2016; Burch & Sutherland, 2006; Carter et al., 2017; Matthews, 2009; Stewart & Collins, 2014; Thompson-Ebanks, 2014; Venille, Street, & Fossey, 2014; Vidali, 2009). Individuals with disabilities must be considered and included as full members of higher education's community (Henning, 2007).
As more and more individuals with disabilities enter into college, a reframing of disability and disclosure is beginning to occur (Mingus, 2017). This reframing is a necessity born out of ableism and mis-preconceived notions of ability. Those of us who choose to reveal our disability take chances each time as we speak out and address our colleagues and professors. Thus, the moment of disclosure becomes a powerful and soul-searched moment(s) of access intimacy (Mingus, 2011). Shifting higher education's framework of disability disclosure involves the infusion of a liberating humanizing intersectional framework throughout academic cultures, in which disability is perceived as diversity and the diversity within disability is acknowledged and valued. A liberating humanizing intersectional framework has offered a richer understanding of the hidden curriculum and normative discourses of disability disclosure. At the same time, we recognize that we are not merely disabled nor do we wish to be defined solely on the basis of our disability. Thus, while (re)examining disability disclosure, there is not only a need for an anti-ableist language, but also a need for an intersectionality framework. An anti-ableist and intersectional analysis of disclosure counters the hegemonic notions that disabled bodies are problematic and devoid of diversity. Incorporating this framework reinforces how disability disclosure is an intersectional embodiment of fluidity, complexity, and contradictions across the spectrum of diversity. While it is important to bring to the forefront our efforts in disrupting the silence shrouding disability disclosure, intersectionality language is also critical in structuring communal spaces of dialogue across campus spaces. Together, in our different yet entangled embodiments, is when we create and maintain holistic liberating intersectional spaces of self-care, self-love, accountability, interdependence, and integrity. Therefore, disability disclosure cannot be reduced to legal and technical accommodations. Instead, it is truly a moment of acknowledgement when any feelings of shame associated with disability has lifted or departed. The capability to connect with another is a life-changing opportunity in the relationships one has with colleagues and professors, loved ones, and even those one has just met.
Therefore, further research around the role of disability disclosure from a liberating humanizing intersectional framework is needed. Reflecting upon emotional response and anxiety in fieldwork, Valente (2017) affirmed the importance of anxiety as an analytical tool for examining ethical and methodological quandaries, particularly with Critical Disability Studies research. Valente (2017) argued for further development and engagement with a theory of anxiety as part of the "researchers' reflexivity toolkit" (p. 1). In a similar fashion, further theorization and praxis of disclosure is needed within the graduate curriculum toolbox. The absence of discussions about disability disclosure in our training in becoming scholars and leaders perpetuates the hidden curriculum of who belongs in the academy. Furthermore, with the absence of spaces to explore how disclosure operates within our everyday lives, we inadvertently uphold systematic hegemonies, power, and privilege. These occurrences and actions are built upon the choice and determination to take a risk in disclosure. Individuals with disabilities want inclusion in all parts of the academy, inclusion and opportunities for authentic access intimacy (Mingus, 2017). The ability of building access intimacy is a challenge for all of us, disabled and nondisabled alike. It asks much of each individual, and in doing so, trust and faith in others is required (Mingus, 2017). As Mingus (2017) advocated for "liberatory access," a type of access that brings the world of equality into reality and unmasks the status quo, we contend this access brings our "collective responsibility" (Mingus, 2017, para. 24) into a dominant discourse that disability is a part of our lives, a powerful thread running through not a static state of being. Instead, it is a dynamic process and existence in disrupting the spaces where we are perceived as unexpected guests.
The significance of collaborative autoethnographic methodology, as an act of disruption, our lived experiences become a tool in structuring new spaces of engagement and gaining knowledge. Engaging in restless reflexive is a form of political action and responsibility (Titchkosky, 2011). As Freire (1998) notes, "to teach is not to transfer knowledge but to create the possibilities for the production or construction of knowledge" (p. 30). In the spirit of Freire, while it is important to provide access to public acknowledgement of disclosure, pain, trauma, and anxiety, locating tools that allows addressing and exploration of these constructs in an anti-ableist manner is crucial to transforming institutional and departmental curriculums, cultures, policies, and social spaces (Kafer, 2016; Valente, 2017). The current tools project disclosure onto particular bodies rather than critically deconstruct or offer alternative tools that embody and facilitate a liberating disability pedagogy (Kafer, 2016; Mingus, 2017; O'Toole, 2013).
As an alternative tool, collaborative autoethnography allows us to carve out space(s) to explore, both independently and collaboratively, in our own distinctive dialect, on both micro and macro levels. Rather than being invited to participate in a study, this approach enables us to make a choice to undergo an organic process of turning within, to dialogue, and to choose what and how the words may fall on the page (Ellis et al., 2011; Guyotte & Sochacka, 2016). This process instills a sense of community, as it requires a sharing based upon trust and a commitment that each of the individuals to the best of their knowledge will be open and honest while looking into one's soul/internal turmoil; there is no place to hide in the writing of the findings, each word placed to page is the authentic experience of the study in this systematic approach to data gathering (Chang, Ngunjiri, & Hernandez, 2013; Ngunjri, Hernandez & Chang, 2010).
This process can only be completed when we give ourselves the permission to look inside and see who we are through a lens of honesty and careful thought. It is through our own openness to our inner truth and vulnerability that this process becomes possible. It is through the courage of being vulnerable that we can connect and transform our lives and write our truth upon the page. To answer the questions we are seeking requires consideration of soul or inner turmoil, not just an academic quest to understand. This approach is rich in emotional layers and combines a stripping away through a process of becoming vulnerable and exposed (Jones, Adams, & Ellis, 2013; Chang, Ngunjiri, & Hernandez, 2013; Ngunjri, Hernandez & Chang, 2010).
Language is where historically marginalized populations have the opportunity to momentarily disrupt and present an alternative interpretation, narrative, or reality (Valeras, 2010). As a form of counternarrative, through critical reflection and praxis, we challenge, resist, and disrupt the silencing forces of the dominant hegemonies while envisioning disclosure as a catalyst towards a socio-spatial justice orientation across the landscape of higher education (Kafer, 2016; O'Toole, 2013; Price, 2009; Valle, Solis, Volpitta, & Connor, 2004). This reflexive process reveals how disclosure of identity is complex, built upon the foundation of self-defining truth and our own assessment of the risk or risks involved. For disclosure is risky, and revealing requires courage, while combating fears that understanding may be a faraway thought. However, without disclosure perceptions cannot change and silence will continue to hold fear. In silence there is no power, in silence there is no change, in silence no one is free. Individual narratives mark places, slots in time for desired and required change. One's identity is an evolving process of self-acceptance. The intersections of an individual's life fill passageways first known only to self. To reveal the intersections and continuing the journey is a choice. Disclosure transforms from merely an accessibility issue to a catalyst that facilitates a liberating and humanizing culture that encourages individuals to move towards integrated selves (Valeras, 2010).
Conclusion and Further Considerations
While ADA, IDEA, and Section 504 have enabled individuals with disabilities access to education, a well-established body of literature highlights the multiple forms of inaccessibility that students with disabilities encounter on a daily basis, both on a personal and institutional level (Bell, Carl, & Swart, 2016; Mullins & Preyde, 2013). Alternatively, there is limited research on disability disclosure and its implications for achieving democratic education, in particular, personalized accounts written by graduate students with disabilities. Reflecting the problematic implications of the dominant hegemony of disability, we offer lived experiences, not theorized versions of identities, but ones that move past empirical statements (Kerschbaum, 2014). Collectively and within our own narratives, we explored the dynamics of disability disclosure, trauma, pain, access intimacy, intersectionality, and liberation through the following questions: How is my work authentic? How or do I disclose my disability? Can I hide behind a wall of invisibility? What I am I willing to disclose in a heartbeat? What am I not willing to disclose in a heartbeat? What can be gained if we teach how to disclose? What can be learned if we disclose? What can be changed if we disclose?
Delving into critical reflections of our lived experiences presents insight into the subtle nuances of how the ableist discourses on disability and disclosure operate in everyday interactions, thus impacting the quality of educational retention and achievements. Utilizing a liberating humanizing intersectional framework highlights not only how disclosure is a personal choice, but also how schools are social and political institutions that tremendously influence and perpetuate hegemonic discourses about disability and disclosure (Valle, Solis, Volpitta, & Connor, 2004). By exploring the pain and trauma in our narratives, we open up a dialogic space(s) to explore and broaden understanding on both individual and institutional levels, along with critically challenging the dominant hegemonies within our lives (Kafer, 2016; O'Toole, 2013). As O'Toole noted, "This is not to imply that ableism disappears but to acknowledge that when one moves from isolation to community, group resources provide invaluable support and strategies" (para. 52). Thus, disclosure becomes a catalyst in facilitating a culture of access intimacy (Mingus, 2017) and interdependence that is reflective of the multidimensionality within disabled bodies and their lived experiences. Through our lived experiences, we urge for a shift within the graduate curriculum and as campuses as a whole to develop greater accountability in upholding and instilling a liberating culture that celebrates humanity as complex and fluid, particularly with disabled bodies.
During this process, we recognize that two individuals with disabilities is a small sample size. Furthermore, we acknowledge our position in a graduate program involves considerable power and privilege. We also must recognize how exposure to Disability Studies has influenced our perspective on disability disclosure, as the field interprets disability as part of the spectrum of diversity. With these considerations, we reflect upon our roles and responsibilities in facilitating a liberating humanizing intersectional framework across different spaces—classrooms, conference rooms, symposiums, and departments. Together, we can challenge, disrupt, and resist the silencing hegemonies of discourse surrounding disability disclosure. In response, this paper continues and builds upon the dialogue around disability disclosure as a means of structuring opportunities of sharing, building connections, and a continued movement to break down walls of perceived difference and discrimination. The exchange between reader and speaker offers opportunities and a willingness for growth. Self-disclosure is a personal and courageous investment to bring about change in the perception of individuals with disabilities while (re)envisioning holistic, equitable, and democratic educational opportunities, attainment, and achievement; for in silence, nothing can change.
- Alshammari, S. (2017). A hybridized academic identity: Negotiating a disability within academia's discourse of ableism. In S. L. Kerschbaum, L. T. Eisenmann, & J. M. Jones (Eds.), Negotiating disability: Disclosure and higher education (pp. 25-38). Ann Arbor, MI: University of Michigan Press.
- American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing. https://doi.org/10.1176/appi.books.9780890425596
- Anderson, L. (2006). Analytic autoethnography. Journal of Contemporary Ethnography, 35(4), 373-395. https://doi.org/10.1177/0891241605280449
- Barnes, C., Mercer, G., & Shakespeare, T. (1999). Exploring disability: A sociological introduction. Cambridge, UK: Polity Press.
- Barrangan, E., & Nusbaum, E. A. (2017). Perceptions of disability on a postsecondary campus: Implications for oppression and human love. In S. L. Kerschbaum, L. T. Eisenmann, & J. M. Jones (Eds.), Negotiating disability: Disclosure and higher education (pp. 39-56). Ann Arbor, MI: University of Michigan Press.
- Bell, D., Carl, A., & Swart, E. (2016). Students with hearing impairment at a South African university: Self-identity and disclosure. African Journal of Disability, 5(1), 1-9. https://doi.org/10.4102/ajod.v5i1.229
- Bhabha, H. K. (1994). The location of culture. New York, NY: Routledge.
- Blockmans, I. G. E. (2015). "Not wishing to be the white rhino in the crowd": Disability disclosure at university. Journal of Language and Social Psychology, 34(2), 158-180. https://doi.org/10.1177/0261927X14548071
- Boskovich, L. (2015). A narrative and poetic exploration into self-defining asperger's: Ceasing to be X-1 (Masters' Thesis). Retrieved from https://digitalcommons.chapman.edu/ces_dissertations/3
- Burch, S., & Sutherland, I. (2006). Who's not yet here? American Disability History. Radical History Review, 2006(94), 94-127. https://doi.org/10.1215/01636545-2006-94-127
- Cai, R. Y., & Richdale, A. L. (2016). Educational experiences and needs of higher education students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(1), 31-41. https://doi.org/10.1007/s10803-015-2535-1
- Carter, A. M., Catania, R. T., Schmitt, S., & Swenson, A. (2017). Bodyminds like ours: An autoethnographic analysis of graduate school, disability, and the politics of disclosure. In S. L. Kerschbaum, L. T. Eisenmann, & J. M. Jones (Eds.), Negotating disability: Disclosure and higher education (pp. 95-114). Ann Arbor, MI: University of Michigan Press.
- Cawthon, S. W., & Cole, E. V. (2010). Postsecondary students who have a learning disability: Student perspectives on accommodation access and obstacles. Journal of Postsecondary Education and Disability, 23(2), 112-128. Retrieved from http://www.eric.ed.gov/PDFS/EJ906696.pdf
- Cawthon, S. W., Schoffstall, S. J., & Garberogolio, C. L. (2014). How ready are postsecondary institutions for students who are d/Deaf or Hard-of-Hearing? Education Policy Analysis Archives, 22(13), 1-25. https://doi.org/10.14507/epaa.v22n13.2014
- Chang, H. (2008). Autoethnography as method. Walnut Creek, CA: Left Coast Press.
- Chang, H., Hernandez, K. C., & Ngunjiri, F. W. (2012). Collaborative autoethnography. Walnut Creek, CA: Routledge.
- Cole, E. V., & Cawthon, S. W. (2015). Self-disclosure decisions of university students with learning disabilitites. Journal of Postsecondary Education and Disability, 28(2), 163-179. Retrieved from http://files.eric.ed.gov/fulltext/EJ1074663.pdf
- Collins, B. (2015). Reflection on doctoral supervisions: Drawing from the experiences of students with additional learning needs in two universities. Teaching in Higher Education, 20(6), 587-600. https://doi.org/10.1080/13562517.2015.1045859
- Corroto, C., & Havenhand, L. K. (2015). Institutional resistance to accessible architecture and design: A collaborative autoethnography. In R. J. Berger & L. S. Lorenz (Eds.), Qualitative inquiry: Methods for rethinking an ableist world (pp. 109-125). Burlington, VT: Ashgate Publishing Company.
- Crotty, M. (1998). The foundations of social research: Meaning and perspective in the research process. London, UK: SAGE.
- Damiani, M. L., & Harbour, W. S. (2015). Being the wizard behind the curtain: Teaching experiences of graduate teaching assistants with disabilities at U.S. Universities. Innovative Higher Education, 40(5), 339-413. https://doi.org/10.1007/s10755-015-9326-7
- Davidson, J., & Henderson, V. (2010). 'Coming out' on the spectrum: autism, identity and disclosure. Social & Cultural Geography, 11(2), 155-170. https://doi.org/10.1080/14649360903525240
- Davis, L. J. (1995). Enforcing normalcy: Disability, deafness, and the body. New York, NY: Verso.
- Davis, L. J. (Ed.) (1997). Disability studies reader. New York, NY: Routledge.
- Davis, L. J. (2011, September 15). "Why is disability missing from the discourse on diversity?" Retrieved from https://www.chronicle.com/article/Why-Is-Disability-Missing-From/129088
- Davis, L. J. (Ed.) (2013). Disability studies reader (4th ed.). New York, NY: Routledge. https://doi.org/10.4324/9780203077887
- De Cesarei, A. (2014). Disclosure of disability by university students: Development of a study protocol. Open Journal of Social Sciences, 2014(2), 71-76. https://doi.org/10.4236/jss.2014.28012
- De Cesarei, A. (2015). Psychological factors that foster or deter the disclosure of disability by university students. Psychological Reports, 116(3), 665-673. https://doi.org/10.2466/15.PR0.116k26w9
- Denzin, N. K., & Lincoln, Y. S. (Eds.). (2000). Handbook of qualitative research (2nd ed.). Thousand Oaks, CA: SAGE.
- Dolmage, J. T. (2017). Academic ableism: Disability and higher education. Ann Arbor, MI: University of Michigan Press. https://doi.org/10.3998/mpub.9708722
- Ellis, C. (2013). Carrying the touch for autoethnography. In S. H. Jones, T. E. Adams, & C. Ellis (Eds.), Handbook of autoethnography (pp. 9-12). Walnut Creek, CA: Left Coast Press.
- Ellis, C., Adams, T. E., & Bochner, A. P. (2011). Autoethnography: An overview. Forum: Qualitative Social Research, 12(1), Art. 10. https://doi.org/10.17169/fqs-12.1.1589
- Ferri, B., & Connor, D. J. (2006). Reading resistance: Discourses of exclusion in desegregated & inclusion debates. New York, NY: Peter Lang.
- Freire, P. (1970/1972/2000). Pedagogy of the oppressed. New York, NY: Continuum International Publishing Group.
- Freire, P. (1998). Pedagogy of freedom: Ethics, democracy, and civic courage. Lanham, MD: Rowman & Littlefield.
- Freire, P. (2008). Pedagogy of the oppressed (30th Anniversary ed.). New York, NY: The Continuum International Publishing Group.
- Garrison-Wade, D. F. (2012). Listening to their voices: Factors that inhibit or enhance postsecondary outcomes for students' with disabilities. International Journal of Special Education, 27(2), 113-125. Retrieved from http://www.eric.ed.gov/PDFS/EJ982866.pdf
- Geertz, C. (1973). The interpretations of cultures. New York, NY: Basic Books.
- Goodley, D. (2010). Disability Studies: An interdisciplinary introduction. Thousand Oaks, CA: SAGE.
- Griffin, R. A. (2012). I AM an angry black woman: Black feminist autoethnography, voice, and resistance. Women's Studies in Communication, 35(2), 138-157. https://doi.org/10.1080/07491409.2012.724524
- Guyotte, K. W., & Sochacka, N. W. (2016). Is this research? Productive tensions in living the (collaborative) autoethnographic process. International Journal of Qualitative Methods, 15(1), 1-11. https://doi.org/10.1177/1609406916631758
- Hadley, W. M. (2011). College students with disabilities: A student development perspective. New Directions for Higher Education, 2011(154), 77-81. https://doi.org/10.1002/he.436
- Henning, G. (2007). Campus commons – what happens if others find out? About Campus: Enriching the Student Learning Experience, 12(3), 26-29. https://doi.org/10.1002/abc.215
- Hernandez, K. C., Ngunjiri, F. W., & Chang, H. (2015). Exploiting the margins in higher education: A collaborative autoethnography of three foreign-born female faculty of color. International Journal of Qualitative Studies in Education, 28(5), 533-551. https://doi.org/10.1080/09518398.2014.933910
- Hesse-Biber, S. N., & Leavy, P. (Eds.). (2006). Emergent methods in social research. Thousand Oaks, CA: SAGE. https://doi.org/10.4135/9781412984034
- Hughes, S., Pennington, J. L., & Makris, S. (2012). Translating autoethnography across the AERA standards: Toward understanding scholarship as empirical research. Educational researcher, 41, 209-219. https://doi.org/10.3102/0013189X12442983
- Johnstone, D. (2001). An introduction to disability studies (2nd ed.). London, UK: David Fulton.
- Jones, S. H., Adams, T. E., & Ellis, C. (2013). Handbook of autoethnography. Walnut Creek, CA: Left Coast Press.
- Kafer, A. Un/safe disclosures: Scenes of disability and trauma. Journal of Literacy & Cultural Disability Studies, 10(1), 1-20.
- Kaul, K. (2017). Risking experience: Disability, Precarity and Disclosure. In S. L. Kerschbaum, L. T. Eisenmann, & J. M. Jones (Eds.), Negotiating disability: Disclosure and higher education (pp. 171-187). Ann Arbor, MI: University of Michigan Press.
- Kerschbaum, S. L. (2014). On rhetorical agency and disclosing disability in academic writing. Rhetoric Review, 33(1), 55-71. https://doi.org/10.1080/07350198.2014.856730
- Kerschbaum, S. L., Eisenman, L. T., & Jones, J. M. (2017). Negotiating disability: Disclosure and higher education. Ann Arbor, MI: University of Michigan Press. https://doi.org/10.3998/mpub.9426902
- Knight, A. (2017). Feminism, disability, and the democratic classroom. In S. L. Kerschbaum, L. T. Eisenmann, & J. M. Jones (Eds.), Negotating disability: Disclosure and higher education (pp. 57-74). Ann Arbor, MI: University of Michigan Press.
- Lechtenberger D., & Lan, W. Y. (2010). Accommodation strategies of college students with disabilities. The Qualitative Report, 15(2), 411-429. Retrieved from http://www.nova.edu/ssss/QR/QR15-2/barnard-brak.pdf
- Lingsom, S. (2008). Invisible impairments: Dilemmas of concealment and disclosure. Scandinavian Journal of Disability Research, 10(1), 2-16. https://doi.org/10.1080/15017410701391567
- Linton, S. (1998). Claiming disability: Knowledge and identity. New York: New York University Press.
- Low, J. (1996). Negotiating identities, negotiating environment: An interpretation of experiences of students with disabilities. Disability & Society, 11(2), 235-248. https://doi.org/10.1080/09687599650023254
- Marshak, L., Wieren, T. V., Ferrell, D. R., Swiss, L., & Dugan, C. (2010). Exploring barriers to college student use of disability services and accommodations. Journal of Postsecondary Education and Disability, 22(3), 151-165. Retrieved from http://www.eric.ed.gov/PDFS/EJ906688.pdf
- Matthews, N. (2009). Teaching the 'invisable' disabled students in the classroom: Disclosure, inclusion and the social model of disability. Teaching in Higher Education, 14(3), 229-239). https://doi.org/10.1080/13562510902898809
- McGregor, K. K., Langenfeld, N., Van Horne, S., Oleson, J., Anson, M., & Jacobson, W. (2016). The university experience of students with learning disabilities. Learning Disabilities Research & Practice, 31(2), 90-102. https://doi.org/10.1111/ldrp.12102
- McIlveen, P. (2008). Autoethnography as a method for reflexive research and practice in vocational psychology. Australian Journal of Career Development, 17(2), 13-20. https://doi.org/10.1177/103841620801700204
- McLaren, P. (2007). Life in schools: An introduction to critical pedagogy in the foundations of education (5th ed.). Boston, MA: Pearson Education.
- Mingus, M. (2011, May 5). Access intimacy: The missing link [Blog post]. Retrieved from https://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/
- Mingus, M. (2017, April 12). Access intimacy, interdependence and disability justice [Blog post]. Retrieved from https://leavingevidence.wordpress.com/2017/04/12/access-intimacy-interdependence-and-disability-justice/
- Mingus, M. (2017, August 6). Forced intimacy: An ableist norm [Blog post]. Retrieved from https://leavingevidence.wordpress.com/2017/08/06/forced-intimacy-an-ableist-norm/
- Mullins, L., & Preyde, M. (2013). The lived experience of students with an invisible disability at a Canadian university. Disability & Society, 28(2), 147-160. https://doi.org/10.1080/09687599.2012.752127
- Ngunjiri, F. W., Hernandez, K. C., & Heewon, C. (2010). Living autoethnography: Connecting life and research. Journal of Research Practice, 6(1), 1-17. Retrieved from http://jrp.icaap.org/index.php/jrp/article/view/241/186
- O'Toole, C. J. (2013). Disclosing our relationships to disabilities: An invitation for Disability Studies scholars. Disability Studies Quarterly, 33(2). https://doi.org/10.18061/dsq.v33i2.3708
- Oleny, M. F., & Brockelman, K. F. (2003). Out of the disability closet: Strategic use of perception management by select university students with disabilities. Disability & Society, 18(1), 35-50. https://doi.org/10.1080/713662200
- Pearson, H. (2010). Complicating intersectionality through the identities of a hard of hearing Korean adoptee: An Autoethnography. Equity & Excellence in Education, 43(3), 341-356. https://doi.org/10.1080/10665684.2010.496642
- Price, M. (2009). 'Her pronouns wax and wane': psychosocial disability, autobiography, and counter-diagnosis. Journal of Literary & Cultural Disability Studies, 3. (1), 11-34. https://doi.org/10.1353/jlc.0.0010
- Price, M. (2011). Mad at school: Rhetorics of mental disability and academic life. Ann Arbor, MI: University of Michigan Press. https://doi.org/10.3998/mpub.1612837
- Prowse, S. (2009). Institutional construction of disabled students. Journal of Higher Education Policy and Management, 31(1), 89-96. https://doi.org/10.1080/13600800802559302
- Quinlan, M. M., Bates, B. R., & Angell, M. E. (2012). 'What can I do to help?': Postsecondary students with learning disabilities 'perceptions of instructors' classroom accommodations. Journal of Research in Special Educational Needs, 12(4), 224-233. https://doi.org/10.1111/j.1471-3802.2011.01225.x
- Reed, M., & Curtis, K. (2012). Experiences of students with visual impairments in Canadian higher education. Journal of Visual Impairment & Blindness, 106(7), 414-425. https://doi.org/10.1177/0145482X1210600704
- Reid, D. P. (2014). Stuck between a rock and a hard place: Exploring the lived experiences of college students who do not request accommodations. Dissertation, Chapman University. Pro Quest, UMI Dissertation Publishing, #3665093.
- Rocco, T. S. (2001). "My disability is part of me": Disclosure and students with invisible disabilities. In R. O. Smith, J. M. Dirkx, P. L. Eddy, P. L. Farrell, & M. Polzin (Eds.), Proceedings of the 42nd Adult Education Research Conference (pp. 319-324). East Lansing, MI: Michigan State University.
- Samuels, E. J. (2003). My body, my closet: Invisible disability and the limits of coming-out discourse. GLQ: A Journal of Lesbian and Gay Studies, (1), 233-255. https://doi.org/10.1215/10642684-9-1-2-233
- Samuels, E. J. (2017). Passing, coming out, and other magical acts. In S. L. Kerschbaum, L. T. Eisenmann, & J. M. Jones (Eds.), Negotiating disability: Disclosure and higher education (pp. 15-24). Ann Arbor, MI: University of Michigan Press.
- Shepler, D. K., & Woosley, S. A. (2012). Understanding the early integration experiences of college students with disabilities. Journal of Postsecondary Education and Disability, 21(1), 37-50. Retrieved from http://www.eric.ed.gov/PDFS/EJ970018.pdf
- Siebers, T. (2013). Disability and the theory of complex embodiment. In L. Davis (Ed.), The Disability Studies reader (4th ed.; pp. 275-282). New York, NY: Routledge.
- Stein, K. F. (2013). DSS and accommodations in higher education: Perceptions of students with psychological disabilities. Journal of Postsecondary Education and Disability, 26(2), 145-161. Retrieved from http://www.eric.ed.gov/contentdelivery/servlet/ERICServlet?accno=EJ1026925
- Stewart, D., & Collins, K. (2014). Constructing disability: Case studies of graduate students and new professionals with disabilities in student affairs. College Student Affairs Journal, 32(1), 19-33.
- SooHoo, S. (2006). Talking leaves: Narratives of otherness. Cresskill, NJ: Hampton Press.
- Terras, K., Leggio, J., & Phillips, A. (2015). Disability accommodations in online courses: The graduate student experience. Journal of Postsecondary Education and Disability, 28(3), 329-340. Retrieved from https://eric.ed.gov/?id=EJ1083812
- Thompson-Ebank, V. (2014). Disability disclosure among college students with psychiatric disabilities in professional majors: Risks and implications for rural communities. Professional Development: The International Journal of Continuing Social Work Education, 17(2), 18-28.
- Tidwell, R. (2004). The "invisible" faculty member: The university professor with a hearing disability. Higher Education, 47(2), 197-210. https://doi.org/10.1023/B:HIGH.0000016421.25286.e8
- Titchkosky, T. (2011). The question of access: Disability, Space, and Meaning. Toronto, Canada: University of Toronto Press.
- Tomaselli, K. G., Dyll, L., & Francis, M. (2008). "Self" and "other": Auto-reflexive and indigenous ethnography. In N. K. Denzin, Y. S. Lincoln, & L. Tuhiwai Smith (Eds.), Handbook of critical and indigenous methodologies (pp. 347-372). Thousand Oaks, CA: SAGE. https://doi.org/10.4135/9781483385686.n17
- U.S. Department of Education, National Center for Educational Statistics. (2016). Digest of Education Statistics. Retrieved March 31, 2017, from https://nces.ed.gov/fastfacts/display.asp?id=60
- Vaccaro, A., Daly-Cano, M., & Newman, B. M. (2015). A sense of belonging among college students with disabilities: An emergent theoretical model. Journal of College Student Development, 56(7), 670-686. https://doi.org/10.1353/csd.2015.0072
- Valente, J. M. (2017). Anxiety as a tool for Critical Disability Studies fieldwork. Review of Disability Studies: An International Journal, 13(2), 1-15.
- Valeras, A. B. (2010). "We don't have a box": Understanding hidden disability identity utilizing narrative research methodology. Disability Studies Quarterly, 30(3/4). https://doi.org/10.18061/dsq.v30i3/4.1267
- Valle, J., Solis, S., Volpitta, D., & Connor, D. (2004). The disability closet: Teachers with learning disabilities evaluate the risks and benefits of "coming out". Equity and Excellence in Education, 37(1), 4-17. https://doi.org/10.1080/10665680490422070
- Venville A., Street, A. F., & Fossey, E. (2014). Good intentions: Teaching and specialist support staff perspectives of student disclosure of mental health issues in post-secondary education. International Journal of Inclusive Education, 18(11), 1172-1188. https://doi.org/10.1080/13603116.2014.881568
- Verdinelli, S., & Kutner, D. (2016). Persistence factors among online graduate students with disabilities. Journal of Diversity in Higher Education, 9(4), 353-368. https://doi.org/10.1037/a0039791
Professor Williams consented verbally and gave written permission to using her name in the manuscript.
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