Abstract

This article takes as its entry point the borrowing of coming out discourse in Disability Studies. It first discusses the limits of using such analogies and then investigates its fit when considering the specificity of the Deaf experience. The research is based on five personal histories garnered through in-depth interviews with individuals primarily discussing their processes of coming to identify as Deaf, but also some discussion of coming to identify as gay/lesbian. Their stories indicate that unlike its deployment in broader disability studies, the discourse of coming out in relation to adopting a Deaf cultural identity does not resonate. Instead, the narratives show that while these Deaf individuals did use a sign for "coming out" to describe their process of identifying as gay/lesbian, they did not use it to describe their Deaf identity development. Their narratives of coming to identify as culturally Deaf instead predominantly use a phrase that can interpreted from sign language as "becoming Deaf," although some of the same processes and features of identity development are present. It concludes with a discussion of the tensions between Deaf and disability studies, the limits of analogizing disability with other categories and particularly the limits of coming out discourse regarding the Deaf experience, as well as a discussion of the universalizing view of disability studies.


Background: Disability and the coming out metaphor

Much disability scholarship began with attempts to legitimize disability as a social category. One way this legitimization has been attempted is through articulating disability as a social category that is like other social categories and therefore should be analyzed as such. For example, literature in the sociology of disability from the United Kingdom, such as Tom Shakespeare's work (1996), begins with, "Parallels are drawn with the experiences of women, lesbians and gays, and black people" (Shakespeare, 1996, p. 94). More than a decade later, Hirschmann (2012) suggested that "disability is the new gender" (p. 396). Of all the social categories, disability has been especially likened to being lesbian, gay, bisexual, or trans (LGBT). As Samuels (2003) explained in a special issue of Gay and Lesbian Studies Quarterly focused on disability, "A number of disability theorists suggest that disability has more in common with sexual orientation than with race, ethnicity, or gender" (2003, p. 234). While narratives about the experience of being both LGBT and disabled have appeared (e.g. Brownworth & Raffo, 1999; Clare, 1999, 2001; Tremain, 1996) much of what is discussed here is the scholarship that draws on analogy, likening the LGBT experience to the disability experience (e.g. Davis, 1995; Linton, 1998; Shakespeare, 1996; Thomson, 1997; Wendell, 1997). It should be noted that analogy can often be problematic in that through saying one category is like another erases the intersections of identities, such as being queer and disabled. It can also shift the focus from the complex, interlocking systems of oppression at work, which is what intersectionality from Black feminist thought seeks to highlight (e.g. Collins & Bilge, 2016; Crenshaw, 1991), to focusing exclusively on individual identities. Other scholars have already published work in this publication (e.g. Dunhamm et al., 2015) on the limits of analogies, particularly Schalk's section in Dunhamm et al., 2015, which addresses both their problematic nature, yet also the usefulness it sometimes has. Given these problems of analogy, it is important to investigate and reflect on the ways in which the field of Disability Studies has historically used an analogy between disability and queerness, particularly through its appropriation of "coming out."

The most common arguments that have appeared to argue for a strong affinity between disability and the gay/lesbian experience are the following: First, it is claimed that these identities both actively resist pathologization (e.g., Colligan, 2004), secondly that they are typically not shared identities within the family system (e.g., Samuels 2003), and finally, both may involve "passing" to a certain extent (e.g., Brune & Wilson, 2013). Specifically, invisible disability, which may not be immediately known without disclosure, "presents the dilemma of whether or not or when to come out or to pass" (Garland-Thomson, 1997, p. 14). A variety of other scholars have noted parallels in issues of normativity, managing stigma, and "passing" for both disability and queerness (e.g. Kafer 2003; McRuer 2002; Atkins & Marston, 1999.; Linton, 1998; Sherry 2005; Swain & Cameron, 1999). Harmon (2010) put forward "compulsory hearing," an idea that extends the demands that one "pass" and perform able-bodiedness to deafness specifically.

The noted similarities between queerness and disability in terms of pathologization, family experience, and passing have been most comprehensively and clearly articulated in the deployment of the discourse of coming out to describe a disabled individual's process of coming to identify with the disability community. That is, in the literature, coming out is situated as a tool disabled people 1 can use to resist pathologizing discourse, cope with difference within the family, and pushback against pressures to "pass." As is discussed below, the field of Disability Studies regularly borrowed coming out discourse specifically to talk about coming to identify with the disability community. In these instances, coming out is a mode by which individuals move through identity categories or enter into new sociopolitical meanings of one's embodiment. Although coming out has been a useful tool or concept in Disability Studies literature, it is a trope borrowed from the queer experience. Sedgwick insists that coming out is "quite indelibly marked with the historical specificity of homosocial/homosexual definition" (Sedgwick, 1990, p. 72). That is, the deployment of coming out discourse is complicated and problematic, a matter delved into further throughout this article. And yet the borrowing of "coming out" is not unique to Disability Studies; coming out discourse has achieved a kind of "master narrative" status and is often used across many marginalized experiences to articulate stages of identity development and to argue for reclaiming identities that have been considered pathological (Orne, 2011; Saguy & Ward, 2011). Because Disability Studies has utilized coming out discourse, the claim that disabled persons undertake the task of coming out is then a significant space to be explored.

Evidence of the use of coming out discourse in Disability Studies can be found in a variety of influential texts; Garland-Thomson calls her book, Extraordinary Bodies, "the consequence of a coming-out process" (Thomson, 1997, p.ix). She also uses coming out to articulate the difference between accepting a medical model of disability and a social model (Barnes, Mercer, & Shakespeare, 1999; Oliver, 1990; Shakespeare & Watson, 2001), as such coming out involves a person internally shifting the site of the problem from the medical/individual (i.e. one's body) and instead to the discriminatory and exclusionary practices in the social world in response to one's body. Similarly, Linton (1998) analogizes queer passing and the disability trope of overcoming. Passing is the work that individuals with disabilities may engage in to hide their disability: "Both passing and overcoming take their toll…It is not surprising that disabled people also speak of "coming out" in the same way that members of the lesbian and gay community do" (Linton, 1998, p.21). Linton (1998) also uses coming out discourse to assert collective disability culture: "We have come out […] straightforward, unmasked, and unapologetic" (Linton, 1998, p. 3).

Swain and Cameron's (1999) text is entirely focused on the discursive making of a political identity of disability through coming out discourse. They argue invisible disability is like queerness (but also that it is explicitly unlike gender or race) because both are presumed, defaulted (non-disabled, heterosexual) and not necessarily marked by a visibly different embodiment. In sum, coming out discourse encapsulates and distills the analogy between disability and queerness in the literature, is used to articulate an individual process of acceptance and identity development, and deployed as a way to describe the larger, collective level process of visibility as a group.

Finally, Shakespeare (1999) emphasizes that coming out as disabled is "not the same as "coming to terms with impairment," but is about assuming a social identity as a disabled person, and often about taking on a politicized understanding of disability (Shakespeare, 1999, p. 41). His interviews showed that coming out as disabled was a process that occurred over time, and he specifically points out the importance of gathering the voices of gay/lesbian disabled individuals because they are often assumed to asexual. While he had some deaf participants in his sample that discussed preferring to date hearing people because the pool of deaf people to date was quite small, there was no discussion of sign language (if it was used or not by the participants) and how their deaf and/or gay/lesbian identities were discussed vis-à-vis coming out.

In addition to exploring this complicated space of analogy, the research presented here highlights an underexplored point of divergence within the heterogeneous category of disability that may further complicate the borrowing of such discourse by the overall field of Disability Studies. This paper is based on a social scientific approach that utilizes empirical data in order to examine individual's experiences and move outward into larger theoretical discussions and implications from there. The basic contention is that Deaf people occupy the category of invisible disability and are well positioned to respond to the claim of the three areas of overlap in experience mentioned above: pathologization, family difference, and passing. As such, this research explored the following questions in interviews with Deaf, gay/lesbian individuals: Do Deaf persons tell "coming out" stories related to their Deaf identities? What does the answer to this mean for thinking the relationship between Deaf and disability studies? Although much more could be written about the intersections of the Deaf and queer experience, this article is specifically focused on the discourse that participants used to discuss their identity, namely that they talked about undergoing a transition from deaf to Deaf (even as these very d/Deaf categories are unstable, which will be discussed later). This articulation is then looked at through the lens of whether or not it aligns with the usage of coming out narratives that appear in Disability Studies more broadly.

It should be noted that much of the work in queer Disability Studies goes beyond solely analogizing the relationship between the categories of disabled and LGBT and instead delves into the ways queer theory and disability studies share a "radical stance toward concepts of normalcy; [both are] adamantly against the compulsion to observe norms" (Sandahl, 2003, p. 26). 2 That is, the term queer is an analytic model that "developed out of a specifically lesbian and gay reworking of the post-structuralist figuring of identity as a constellation of multiple and unstable positions (Jagose, 1997, p. 2) and may be different from simply looking at gay/lesbian identities. McRuer & Wilkerson (2003) argued that both queer studies and Disability Studies are enterprises are centrally concerned with social construction and the consequences of oppositional binaries (e.g. heterosexual/homosexual and able-bodied/disabled). A variety of other texts delve further into the connections between queer and crip theory, in particular McRuer's concept of compulsory able-bodiedness (McRuer, 2002), which shows the interlocking systems of normativity around sexuality and able-bodiedness. And this interlocking system and compulsory able-bodieness forms the foundation of McRuer's Crip Theory (2006), which outlines crip theory as a tool exposing the ways in which both the categories of heterosexuality and able-bodiedness are constructed as normative and naturalized, as well as how they are situated and privileged within larger sociocultural and economic systems.

While the participants in this research offered much that can contribute to the body of work at the intersections of disability and queerness/queer theory, that is not the focus of this article. Instead, this article has a narrower departure point: an examination of the borrowing of coming out discourse in Disability Studies literature as it is used to articulate that disability is a social category similar to being LGBT and specifically whether or not Deaf individuals participate in this borrowing. One reason for making this distinction between queer Disability Studies and an examination of the LGBT experience – and within this group, the sample that was interviewed only represented the categories of gay/lesbian - is that the participants in this research did not identify as queer; rather, they all specifically identified as gay or lesbian. Secondly, they all engaged in deploying coming out discourse to talk about coming into their gay/lesbian identity; this demonstrates that for participants in this research study, this was indeed discourse they were comfortable with and had adopted. But the focus here is on what the process of coming to a politicized Deaf identity looked like and what terminology they used and characterizations they gave in making sense of that process.

Coming out discourse and Deaf culture

Before delving further, some explanations of conventions are important: In the literature, the word deaf is often used to denote an audiological state, while Deaf indicates a cultural identity stemming from this state. Brueggeman (2008) discusses how this convention began after a 1972 essay by James Woodward articulating the differences between these two categories. This was followed by the Deaf pride movement of the 1980s (Shapiro, 1994; from there, Deaf was understood as a term indicating an identity primarily characterized by one's use of sign language and embodiment of a set of distinct cultural values (Padden and Humphries1990). Later, Lane (1999) and Ladd (2003) talked about Deaf and Deafhood as terms that articulate a resistance to medicalization. Although the premise of this article is to investigate the movement between the categories of deaf and Deaf as Deaf people describe it, it is indeed far more complicated. For example, as Friedner (2010) discussed, these categories are actually unstable and their boundaries unclear, thus if we set out to explore "the ways that little d and capital D d/Deaf are intertwined, I believe that we will see that, despite our initial feelings of unease about the failure of boundary work around these categories, little d sets up conditions of possibility for capital D d/Deafness" (Friedner, 2010, p. 345). Although this paper does not explore the epistemic tensions between these categories per se, the data presented here could be useful for such discussions.

As indicated in the previous section, most of the consideration of similarities between the disability experience and the gay/lesbian experience have not specified any particular type of disability (aside from often highlighting invisible disabilities, as in the Swain and Cameron piece), and instead invoked the large, heterogeneous category of disability in general. However, disability studies scholar Brenda Brueggmann (1999), in a rare example, discussed the particular case of Deaf people through coming out discourse as well. Like other scholars in Disability Studies, Brueggemann draws parallels between Deaf and queer people in that both are stigmatized, marked by medical and religious institutions who attempt to normalize them, and both groups are understood as different from their families. Brueggemann argues that there has been a collective coming out of Deaf culture itself, not just Deaf individuals, beginning with the 1988 Deaf President Now protest, much like that of Stonewall in queer culture. Deaf President Now was a protest that occurred on the Gallaudet University campus where students and other members of the Gallaudet community came together to demand that the university for deaf and hard-of-hearing students be led by a Deaf person and not a hearing person, as had been the case since it was established (Christiansen & Barnartt, 2003). This was a seismic event in the Deaf community, as Gallaudet University, located in Washington, DC, is the only liberal arts college for the deaf and hard-of-hearing in the world and as such is a beacon to the global Deaf community.

Brueggemann also highlights how deafness is an invisible disability and invokes the metaphor of the closet: "Hearing, like one's sexual orientation and relationships, cannot readily be seen[…]You can stand in line next to, even bump elbows with, a gay or deaf person all day and never know. [Italics original][…]It seems so queer, these bodies so closeted" (Brueggemann, 1999, p.153). Thus, Brueggemann, like others, deploys the discourse of "coming out" and the metaphor of the closet as a reclamation, indicating an internal process of transforming a once pathologized body into an acceptable one and becoming a member of a larger culture or community. One becomes Deaf (as opposed to deaf) through a process of identity development that Brueggemann, like others in Disability Studies, analogizes with coming out.

My original analysis of the narratives below shows that unlike for those adopting a politicized disability identity, coming out discourse is not used to describe adopting a Deaf identity. This reflects the already well-documented tension between disability and Deaf culture. While Disability Studies often claims Deaf people as part of its constituency, Deaf people often do not reciprocate and instead argue they are an ethnic or linguistic minority (Eckert, 2005, 2010; Ladd & Lane, 2013; Lane, 2005). This tension has been long considered by sociologists and others (e.g. Burch & Kafer, 2010; Corker, 1998; Davis, 1995; Doe, 2014; Foster, 2001; Lane, 2002; Park, Fitzgerald, & Legge, 2015; Skelton & Valentine, 2003). Nevertheless, as Sinecka (2008) points out, "most culturally Deaf people argue that they are not disabled but that they constitute a linguistic minority. This differentiates their lived experience from other gay people with disabilities, especially with regard to using sign language to communicate and having a strong sense of belonging to the Deaf culture" (Sinecka, 2008, p. 476). Perhaps this is most aptly summed up in the statement on Deaf identity that, "We are proud of our language, culture and heritage. Disabled we are not!" (Bienvenu, 1989, p. 1).

Even though Deaf studies sometimes resists being associated with Disability Studies due to a preference that deafness be viewed as a linguistic and cultural identity, this research takes the Deaf experience seriously in order to think through the particularities of disability experiences (Corker, 2002; Sedgwick, 1990; Thomson, 1997). As has been argued in the literature on Deaf/disability tensions, the experience of deafness is a particular one because Deaf communities have their own language (ASL in the United States) and their own historical contexts. But as Sinecka (2008) argued, there is also an absence of empirical data about Deaf people presented and analyzed in the literature on disability and queerness. This paper seeks to address that gap. Certainly, however, there is literature on being Deaf and queer, as Friedner and Block (2017) state, "deaf studies scholars have recently taken up the challenges of considering how deafness intersects with other categories of difference" (Friedner & Block, 2017, p. 285). For example, Ruiz-Williams et al. (2015) discuss the theoretical project of using intersectionality (Crenshaw, 1991) to explore how Deafness intersects with different identities, including queerness. Bienvenu (2008) discussed the parallels between the pathologization of queerness and deafness, but also the specific identity of being a Deaf lesbian. There are also artifacts of cultural production that articulate experiences of being Deaf and queer, both in published written forms and in ASL. For example, Raymond Luczak published collections of Deaf and queer narratives (Luczak, 1993, 2007), Galloway (2010) published a memoir on being Deaf and queer, and Clayton Valli created ASL poetry about the AIDS epidemic's impact on the Deaf gay community (1995). And lastly, and perhaps most importantly in terms of drawing together literature of queer studies, Deaf studies and Disability Studies, Moges (2017) provides a literary analysis of much of this work through an intersectional and crip theory lens. All of the above Deaf studies scholarship is important work, but limited to cultural production, personal narratives, and literary analysis, not empirical data.

Method

Life histories were gathered from five individuals who identify as both Deaf and gay/lesbian. Participants ranged in age, but all but one of them were raised in the nineteen-seventies and eighties, with the exception of one older participant who grew up in the nineteen sixties. Three lesbian-identified women (one White, one Black, one Bi-racial) and two gay-identified men (one White, one Latinx) participated. One of the limitations of this research is the small sample size and, as I discuss below, as well as the age of the participants. However, the aim was not to obtain a sample based on its capacity for generalizability; rather this project gives voice to a particular set of experiences and identities from a particular time period, and seeks to explore how their reflections on their childhood experiences relate to patterns discussed in the Disability Studies literature regarding the broader category of disability. Furthermore, the in-depth hours-long interviews were meant to delve deeply into the experiences of these individuals to mine for possible future research projects that might be expanded to larger samples.

What is especially important and unique about these interviews is that they were conducted entirely in ASL. Importantly, this meant that Deaf individuals were able to narrate their lives in their own language, thus allowing for the discourse about their life and Deaf identity to emerge and be expressed in their primary language. This is not a common occurrence in research. Deaf people – and indeed people with disabilities in general - are often excluded from participating in or producing research. There are many reasons for the exclusion of deaf participants, including that most researchers do not know ASL and/or recruitment or study materials are not designed in an accessible manner (Jones & Pullen, 1992). One of the aims here is to privilege these often-marginalized voices. As such, all interviews were conducted in ASL, videotaped, and interpreted into written English.

It is important to note that the researcher is a hearing, nationally certified sign language interpreter. The transcripts of interviews that are presented here have been interpreted. That is, the actual signs are not represented in this research, but the best match for putting forth the meaning of the signs is represented in English. Because a process of translation is an inherent aspect in the research, the researcher took steps to ensure accuracy. For example, when possible, transcripts were sent to participants for approval and any corrections that were needed were made. Secondly, during interviews, the researcher clarified statements if it was needed.

This research was approved through the Institutional Review Board at Gallaudet University and had the following inclusion criteria for participants: 1) over the age of 18, 2) identify as Deaf, 3) identify as a member of the LGBT community, and 4) have hearing parents. Since more than ninety percent of deaf children are born to hearing parents, this last criterion was easily met (National Institute Deafness and other Communication Disorders, 2010). It was also crucial for understanding how difference from one's family figures into the process of identity development and management. Participants were recruited through snowball sampling; that is, participants were referred to the researcher by connections in the community. While recruitment occurred through networks at Gallaudet, the participants were largely older and not traditional college-aged students. Gallaudet is not just a university, it also contributes to the surrounding area's Deaf community population. As with all qualitative research projects, the sample one ultimately obtains is not always entirely controlled or anticipated. But the age of the individuals in this sample is important. Based on anecdotal discussions and cultural shifts, if younger college-aged students had been interviewed, it may be that they would talk about radically different experiences from the individuals here. Although I am unaware of social science research documenting queerness and adopting queer as an identity in younger Deaf populations (again, perhaps an issue of the lack of inclusion of Deaf persons in research), it is noteworthy that the individuals in this paper are older and used the words gay and lesbian to identify. One reason not to expand beyond this sample of older individuals in this particular study was due to plans to conduct a larger, future study on younger Deaf and queer individuals to compare both the changes in Deaf identity development after the era of routinization of pediatric cochlear implantation and see if and how this corresponds to or co-occurs with a shift to more individuals identifying as queer over gay/lesbian. That is, the interviews in this study and the themes extracted from them can be used in a future follow up study with a much larger sample to investigate changes across time and technological change. As such, the research presented here is exploratory data; the research participants not only tell us about identity development during a certain time period, but they may help others design future studies intended to capture Deaf experiences so that we might represent the various ways – and how this differs across time—of being Deaf.

Another reason the sample size was kept purposefully small was due to the nature of the interviews; life histories took time and the goal was to delve deeply into their narratives. Participants were broadly asked about their experiences growing up in a hearing family with a different embodiment from them, how they came to identify as Deaf, as well as how they came to identify as gay/lesbian. Each participant was also interviewed twice and each interview lasted from one to three hours. All interviews were conducted on the Gallaudet University campus using an open-ended set of questions designed to capture a comprehensive life history – this included questions about their childhood, adolescence, earliest memories of realizing they were deaf, how they came to identify as gay/lesbian, and how their parents responded and interacted to them. These open-ended questions encouraged participants to use the discourse they would normally use to discuss their identities, as well as discuss anything they felt relevant to telling the story of their life and identity development. Per my methodological approach – one that privileges the stories of these individuals and their knowledge about their own lives and ways of framing their experiences—I asked probing, follow up questions or asked for clarification when needed or desired. Many of the interviews delved into emotional, trying, and sometimes abusive or traumatic experiences and these instances were treated carefully by the researcher during and after interviews.

The inductive and interpretive approach of narrative analysis, along with aspects of grounded theory, was used to analyze the interview transcripts. "Narrative approaches look at how individuals actively construct and reconstruct narratives in the process of making sense of their experiences and presenting their self/selves" (Miller, 2005, p. 19). Narrative methods not only focus on how individuals use the tools available to them, such as tropes like coming out, to make sense of their experiences, but also highlight how experiences are socially structured. That is, this research is not only concerned with how the stories are told, but why they are told in a particular way and the conditions shaping them (Riessman, 1993). For example, in my previous research (2016), I outlined competing "scripts" about deafness – a cultural script and a medical script – that appeared specifically in medical settings and hearing families with deaf children as they contemplated obtaining a cochlear implant for their child. These scripts figured into the ways the participants in this research framed their understanding of what it meant to be deaf, as well as the development of their Deaf identity. The interviews with Deaf adults presented here reveal how participants attempted to live well within a particular normative discourse about what their bodies meant, but also how they encountered, integrated, and/or resisted competing discourses or scripts about deafness.

Once translated into written English, transcripts of the interviews were uploaded into Dedoose, a qualitative research software, and then coded line by line. While grounded theory was not utilized throughout the data collection, data analysis in Dedoose was inductive and followed a grounded theory approach by following patterns and themes that emerged from the life histories and narratives rather than imposing them (Charmaz, 2006). The first round of coding consisted of going line by line and attributing codes that built toward a larger theme (Strauss & Corbin, 1990). For example, as individual participants told stories about interactions with their parents related to their deafness, these were each coded individually then brought together under a larger thematic code called "family dynamics and deafness." This kind of systematic coding was followed line by line throughout the entirety of interviews. The concrete examples and stories from the participants' lives in this article reflect the themes in the findings relevant to the discussion at hand. All participants have been given pseudonyms.

Findings

Resistance to pathologization and the family experience

Similarities between disability and being gay/lesbian have been argued based on the idea that both kinds of identities face pathologization, are likely to not share such characteristics with their family, and invisible disabilities like deafness may allow one to "pass." These phenomena are indeed empirically demonstrated in the interviews. One of the largest themes was the diffuse and persistent pathologization of deafness, primarily through medicalization (Conrad, 2007; Zola, 1972). The process of pathologization and the experience of being different from one's own family are collapsed and analyzed together in this section because, as the data shows, this pathologization was specifically accomplished through family interactions.

From early childhood, being deaf profoundly impacted experiences in a very particular way: four out of five interviewees had parents who did not sign and in fact demanded they learn to speak. That is, the problem was deafness and the solution was the deaf child performing spoken language; language is at the center of these Deaf individuals' experiences. In accordance with the medical model of disability, the site of the "problem" was squarely located on the deaf body. Thus, because all participants were either born deaf or became deaf in infancy, the primary conduit of pathologization was their own family and socialization into the belief that their deafness was pathological began from early childhood. As sociologist Carol Thomas found in her study of narratives of growing up with a disability, "parents are the primary conduit for messages about social meaning of one's difference" (Thomas, 1999, p. 92).

To begin, participants spoke of their childhood and knowing that something was "wrong" with them from as young as they can remember. For example, Nicole, a bi-racial lesbian, recounted, "I didn't understand what was happening or why I had to keep going to the doctor. It was really confusing for me. I couldn't understand why I was getting so much medical attention." Tina, a Black lesbian, discussing her parents said, "Their problem was that they didn't accept who I am. They thought being deaf was something really awful, so they wanted me to become hearing…[My mom] thought [being deaf] was wrong. She obviously wanted me to be hearing." Tina also recalled being seven or eight years old, already understanding this sentiment, and internalizing this, wanting to be hearing too. She also lamented the lack of communication with her mother. She continued, "My mom also doesn't really show affection…I really felt a big lack there. She can only gesture, sign really basic things."

Messages about the pathology of deafness were primarily garnered from medical authorities and were centered on the notion that deaf people should speak and/or lipread. ASL was deemed emblematic of pathology and failure. Indeed, four out of the five participants' parents did not know how to sign, and research has shown that most hearing parents of deaf children do not learn sign (Marschark, Lang, & Albertini, 2002). Of note, the one participant whose parents did learn to sign (she also had a deaf sister and the entire family signed) made no mention whatsoever of the pathologizing discourse of deafness coming from her family in her life history. But for the rest of the participants, the medical script of deafness framed the message that there was something wrong with deafness. Parents developed this negative perception of deafness from doctors and/or audiologists at the time of diagnosis and this negative perception was directly linked to language. For example, David, a White gay man, explained that after his diagnosis as a baby and being taken to see multiple doctors, "My mom decided she would follow their advice. So we sat down, just the two of us and started the speech/lip reading…I really, really hated, just hated it, and I cried and cried." He then told the following story:

Understand, if I wanted something to eat or drink, I had to speak to get it. My mother wouldn't give it to me until I said with my voice. One time, she told me, when I was two and half I wanted a cookie. My mom was in the kitchen washing dishes or something and I was in the living room watching TV. She said I walked into the kitchen and pointed up at the cookies. My mom gestured that I needed to say it. There was a cookie jar on top of the refrigerator and that's what I wanted. She slowly mouthed "I want a cookie" and I refused to read her lips or say it. I just shook my head and pointed at the cookie jar. Again my mother said the words and again I refused. I became really angry, threw a fit and went back to the living room to watch TV. I waited and walked back into the kitchen and thought I better try and speak. I did it and she gave me the cookie.

From the moment of diagnosis, the discourse used by those in medical authority infused a dominant cultural narrative of pathology into the fabric of the family life (namely that the deaf child should learn to speak), which in turn shaped the deaf person's understanding of him/herself and their deafness as defective from birth or infancy. When Louis, a gay Latinx man, asked his father why he should not sign he told him, "I wouldn't make myself marketable for a job. He said that if you can speak, you're OK…They really drilled that into me. Therefore, if you can speak you will be successful in the world, and if you sign you are lesser. They really did tell me that over and over again." Each participant spoke of being aware that their deafness was not wanted. Nicole stated, "My mom and my family definitely supported the view that I needed to be fixed. They really encouraged me to try to fix it." Likewise, Tina said, "I know they love me but, they don't want me to be Deaf. And I'm always having to ask them to write things down. I've been doing that most of my life […] I've always used communication for them, to do what they need me to do, and yet they still want more."

For the most part, the discourse of pathology was grounded in a medical perspective. However, in another parallel with the queer experience, some pathologization emerged from religious beliefs. For example, when Louis discussed being diagnosed as deaf, he wove the medical and religious together: "They [doctors] gave me the hearing aid and told my parents not to sign with me. I still have the original letter from the audiologist telling them not to expose me to sign, to ASL, the deaf community, etc, to only do lip-reading with me because I needed to learn speech. They said that if you exposed me to sign that I wouldn't learn to speak. And we followed those orders to a tee." But his father also incorporated a religious view: "My deafness meant that I was not healthy […] that I needed to be cured. Secondly, I needed to go to church and have god heal me, to make me hearing." His father told him, "All deaf people have the devil inside of them, the devil has a grip on them[…]all deaf, all disabled or blind people need to be cured by god, they need to be cleansed." And Tina recounted the following experience with her mother:

She wanted me to be hearing. I got nothing from going to church, we went and I would always go through the motions. The preacher said his prayers that god would make me hearing and put his hands over my ears. And I would stand there, week after week. Nothing ever happened[…]I was young, I remember maybe 7, 8 or 9[…]I wanted it too, I did, I also wanted to be hearing. We continued to go, she believed that going to church could really make me become hearing. This one time, we went and the preacher had his hands over my ears and carried on with his prayers and everything[…]in front of the whole congregation. Oh yes, it was awful, I remember that very clearly.

The role of medical professionals and their advice is a key influence of how the experience of being deaf in a hearing family begins and permeates the Deaf experience from childhood forward. This is similar to previous studies examining the role of medical or scientific knowledge when parents are raising children with various disabilities, but these practices surrounding deafness affected them in a very specific way; namely through language deprivation. For example, Tina recounts the following story:

Before I went to the deaf school, I didn't know myself. I went in and saw all these people signing. I didn't know what sign language was. I didn't know anything; I had never been exposed to sign or other deaf people. I guess I was around four and half years old and I saw people signing. Someone asked me my name and I didn't understand what they were saying to me or how to communicate anything. Then they spelled my name for me, told me my name, and I learned how to spell it. I learned what my name was and that was in the deaf school. I became so proud after I learned what my name was, and I learned sign, and then later I learned myself and who I was."

While the pathologization of deafness took specific shape (through the demand of spoken language) and began in early childhood, it is notable that their queerness was experienced quite differently – references to pathologizing this aspect of their identity did not appear until early adulthood.

Demands to "pass" when one is deaf

The third way in which disability and queerness are often drawn together is through the shared demand to pass. The data above show the processes of pathologization and family difference, and that the Deaf experience is most saliently grounded in the politics of language. Thus, "passing" for deaf people refers to the ability to communicate in a way that reassures hearing people they can use speech with them and/or that the deaf person acquiesces to communicating through speech/lip reading rather than through sign. It is important to notice the power dynamic inherent in the demand to pass: such communication does not guarantee effective communication, rather it works to ameliorate hearing people's discomfort. That is, passing is complicit with locating the problem on the Deaf person's body. These data indicate that these pressures to pass are indeed present. In the following examples, participants talk about how they experienced the pressures to pass. Note that these examples precede their descriptions of the agency they begin to have as they grow older. While their agency is not the focus of this article, they do indeed develop it. It also appears in their process of acceptance and of "becoming Deaf," which is detailed in the next section.

As above, the majority of the examples of this occurred within the family unit and over the life course starting from early childhood. For example, David describes the amount of work he had to do in order to practice being able to pass:

I continually went to the speech pathologist everyday at school. Plus, after school everyday I went for half an hour. I hated it. I cried and cried and complained about it. I was at school all day and then I'd get home and try to sign and again my mom would be like, "No now you need to read my lips, I don't understand you." She told me she noticed that I really wanted to sign but would just sigh and go ahead and use my voice.

Likewise, Nicole attempted to pass for her family. She stated that she wished her family had learned to sign, "Sometimes I feel that I was forced to speak, that I was forced to be hearing person. I had to be involved in doing things that way, in that [hearing] culture." She goes on to talk about obtaining a cochlear implant at the age of eighteen in an effort to speak with her family. "[The implant] had a lot to do with the conflict that was going on inside of me, all the conflicting desires. A priority for me was to try and communicate better with my family." And Louis describes that "speech always comes first." Although Louis identifies as Deaf, he is audiologically considered hard of hearing:

When I go home I become hard-of-hearing. When I go back I have to go back to being hard-of-hearing…when I go home, I'm different. I become a different person. Of course when I'm with my friends I sign, I'm myself, normal. But when I go back to my parents or see my relatives I have to become hard-of-hearing, go back to speaking, lip reading, etc. I have to prepare myself. And then it's over. But at the end of those days I'm worn out. My eyes are worn out, my voice is worn out. Having to go through all that, who said this or that, it's just a lot…with my family, they are great and all, but I don't understand a word they say.

Tina also feels the pressures to pass. "At home, I have to lip read and all that and it is stressful and oppressive[…]I have to meet their needs, I have to try and talk, write out everything." The only participant who did not discuss passing was Sally, whose parents signed. She never spoke of her parents asking her to speak, as everyone in her family learned to sign. She states, "There was no isolation, I just interacted with everyone. I played sports you know[…]I just grew up deaf, it was fine. We signed, and really all my life I was primarily interacting with deaf people. There wasn't really a lot of hearing people."

For the participants whose parents did not sign, there were consistent pressures within the family unit to pass. But these participants also spoke about the process of pushing back against such pressures, illustrating some of the same features of coming out that have been argued in previous texts that are examined below.

Becoming Deaf, not coming out

The process of claiming a Deaf identity, or what prior disability studies literature has termed "coming out," is used to combat the pressures to pass. In previous literature, coming out accomplished three things: 1) moved the site of the problem, 2) named a process of self-acceptance, and 3) indicated membership in a larger community. The focus of this analysis, and indeed what the previous sections of data are building to, is on exactly how Deaf participants referred to the process in their own words. Their narratives revealed that their process of identifying as Deaf is simply not discussed in terms of "coming out."

All five participants spoke of coming out and used a sign for coming out when discussing their gay or lesbian identity. It should be noted here that there is more than one sign for coming out. Two versions of the sign appeared in the interviews and participants sometimes alternated between both. But when asked about the process of their Deaf identity, not one participant used the sign for coming out in any portion of their narrative on this topic. In an effort to allow for naturalistic discussion of identity processes, the researcher did not suggest the idea of coming out Deaf in the questions, and instead let participants tell their own narratives and use their own signs for doing so. As such, participants spoke not of coming out, but of "becoming Deaf," which was the most common phrase used in participants' narratives to describe a process of identity formation and self-acceptance. Only at the end of the second interview did the researcher ask clarifying questions about such phrasing and ask if coming out could be "borrowed" to describe coming to their Deaf identity. At such time, Sally explained, "Deaf people tend to use the signs "become Deaf" or "born-again Deaf."" David said, "If someone uses the sign "come out" I assume they mean they're gay. I have never seen anyone say they're coming out Deaf. Coming out means they're gay." Louis also states, "I have never seen [coming out Deaf] used. People will often say 'become Deaf' but to come out Deaf? No, I have never seen that[…]I think there is a parallel there, but using the specific sign [coming out] to mean your shift from deaf to Deaf, no."

Although "becoming Deaf" was the most often used phrase, participants also emphasized that the language around this is flexible. Many other signs were floated as good possibilities for describing the process. For example, two participants also used similar phrasing throughout their narratives that roughly translates as "finish Deaf" (which means one can say they have finished fully transforming from deaf to Deaf), or "immerse Deaf" (which means one can say they have finished fully immersing themselves within the Deaf world). Tina stated, "No, I have never seen [coming out Deaf]. I have seen "Deaf pride," "born again Deaf," and "immersion in Deaf," but never "come out deaf."

Furthermore, participants were asked why the phrase "coming out Deaf" was not used. Sally explains, "Honestly I have never heard of such a thing. Deaf people do not like to identify with disability[…]Deaf people are not willing to recognize themselves or come out as disabled. I'm still a closeted disabled person! [Laughs] I am not going to come out proud as disabled. No." She also thought it was appropriation and not advisable: "In my opinion, that phrase was created by the gay community. I think it's a bit offensive to use it for another. I don't think that's right. If coming out is being used for all these things, alcoholic or disabled whatever, does that mean the gay community is accepted? Is there less stigma then? So should we be saying thank you for using the word? I don't know."

Participants also discussed the steps involved in the process of "becoming Deaf." Participants' narratives show that learning sign language was a required and foundational, but not a sufficient, step. As seen in Tina's narrative earlier, she did not access sign language until the age of four and half. This occurred when she was enrolled in a deaf residential school where sign language was used. But later in the interview when she used the phrase "becoming Deaf," I asked her when she would say that happened and why. Her response was, "If you mean acceptance, I think it was in junior high school when I started accepting myself[…]when I accepted my deafness and quit using the hearing aid." But she clarifies, "Of course it wasn't until entering Gallaudet that I really became Deaf[…]Gallaudet was different, my deafness became more political. There were celebrations and festivals, I learned Deaf history, Deaf traditions, etc. All of that I came to understand much later." Likewise, as David explained, he had had some access to sign as a child, but didn't become Deaf until nineteen or twenty and this process was tied to his coming out as a gay man:

I had two identities that I came to accept. For a long time, I repressed both of these. But I became a stronger person and I stood up for what I believed in. I came out to my parents around the same time I told them I identified as Deaf. Around nineteen or twenty years old. I told my dad I was gay around twenty or twenty-one. That's such an age of not knowing. Then you know, you just know that this is what I am, this is my perspective, this is where I stand. So when my mom says things to me, I cannot cower and just accept it, I can challenge it. Before when that would happen, I kept quiet. I was silent. It was hard for me to get the words out. The older and stronger I became as a person, the more I stood up for myself… I wasn't weak and just a follower of whatever people said. Just because my mom and dad say it is so doesn't mean I'm just going to follow it, that they know best. I wasn't just going to just do what they say[…]I felt happy afterwards. My best year was when I was twenty-two. That was the year after I came out, I felt comfortable, I was thrilled. I also felt comfortable in my ASL and in my Deaf identity, you know that's an age, a time in life when you finish those teen years, the awkwardness subsides. I learned who I was, I went through a lot of introspection, I analyzed myself, figured out who I was, what I wanted to do, I figured out myself and I told people about it. I said this is who I am. If you can't accept it, then it's your problem.

Thus, the process of becoming Deaf involved not only learning and embracing ASL as the primary mode of communication, but also shifting the site of the problem from one's body to the norms about that body. But it was also tied to some of the same identity processes around identifying as gay and a larger process of young adulthood and finding one's sense of self and negotiating multiple identities. And finally, becoming Deaf also indicates entry into the larger Deaf community. Sally, who had access to ASL from an early age, stated that she became Deaf later in adulthood:

I identified myself as Deaf because I was signer. I used to work at [name of school] advocating for pride and empowerment a Deaf identity. I learned a lot about the concept of Deaf from working for that school, through talking to their deaf communities and their sensitivities to oppression, that was what really fostered my sense of pride[…]I was involved in the linguistic research and I traveled a lot and learned so much.

For David, it was not until he went to college and had the experience of having Deaf roommates that his identity began to shift: "They explained so much to me about Deaf culture. One of them was from a Deaf family…I learned a lot from them. They taught me about independence, ASL, Deaf culture, what's appropriate, and what's not appropriate."

Finally, Louis tells his story of encountering the Deaf community for the first time during community college and what role that had in his process of becoming Deaf:

There was an interpreting program at the community college and there were a lot of Deaf students. They would criticize my sign […] and showed me ASL. They were very critical and I was really angry sometimes and told them to cut it out, but they said nope! And kept on showing me signs. Sometimes they talked about Gallaudet. I didn't understand the sign for it and finally someone told me that if I didn't know a sign I needed to ask. So I said fine and asked about it. They spelled it and I still didn't know what Gallaudet was. They said, you know, Gallaudet! The deaf university and I said, bullshit a deaf university! And they were all like, yeah, of course. I just had no clue about Gallaudet. It wasn't until I started school at Gallaudet that I identified as Deaf. Until then I had identified as hard of hearing […]my ASL became stronger. I also used to use my voice then and now I never do. I got into Deaf culture. Before all of that, I had thought that ASL was not a real language.

Discussion

These narratives show that participants used the phrase "becoming Deaf," in contrast to the adoption of "coming out" often seen in Disability Studies, to indicate the transformation of their identities to Deaf. Although the phrasing is different, there are similar features found in both processes. Individuals used these narratives to resist pathologization, gain agency, and re-author meanings of their bodies and experiences. These data also clearly show significant overlap between the disability and Deaf experience of pathologization and difference within the family. As seen in previous literature on disability and queerness, Deaf people are also pathologized through ideologies found in medicine and religion. Additionally, Deaf people were also pressured to pass. However, the form that passing takes is specific to the performance of language, extending Harmon's (2010) notion of compulsory hearing to something more along the lines of compulsory speaking. Finally, the transformative effects that coming out discourse in Disability Studies seeks to articulate – shifting the site of the problem from the body to society, describing self-acceptance, and entering into a community – are also present in the form of "becoming Deaf."

This research reveals that even as the transformative identity processes are similar, Deaf persons simply do not use the phrase "coming out" to talk about their experience of becoming culturally Deaf. English terms such as "passing," "closet," and "coming out" do not fit with the Deaf experience, which is centered around the politics of language, even as they might be tropes readily adopted in broader Disability Studies. While I had previously argued (2016) that Deaf persons and Deaf studies would benefit from collaboration and cross-identification with disability, the stories presented here shows that there are important particularities of the Deaf experience. Nevertheless, there are comparable processes being expressed in these transformative narratives.

Many have noted the limits of borrowing coming out discourse and comparing disability and queerness when theorizing disability as a social category (e.g. Samuels 2003, McRuer 2006), but these limitations have most often been based on the argument that the use of analogy is problematic. Here, the particularities of the Deaf experience are used to show a limitation to the borrowing of coming out discourse because of differences within the category of disability and that this further reveals tensions between Deaf/disability studies.

Two important questions are raised by this research that remain to be answered. The first is: What does the particularity of the Deaf experience tell us about the category of disability? Thomson (1997) writes about the valuable role of universalizing discourse in Disability Studies, which states that issues cut across a continuum or spectrum of identities. This is in contrast to minoritizing discourse, which is focused on a more narrowly defined population. Universalizing strengthens the claim that disability is a social category. But the stories told here may complicate the abstracted, disembodied idea of a social category of disability. Yet as the narratives show, there are similar social processes occurring. There is no reason why taking seriously the particularity of the Deaf experience cannot co-exist with and be in dialogue with the broader project of Disability Studies. Indeed, the Deaf experience enriches Disability Studies, and the themes and patterns found in Disability Studies help explain the Deaf experience. I see working at the intersection of these identity categories as a way to deepen the scholarship in both.

The second question this research raises is: How does being Deaf intersect with one's queer identity? In this article, the Deaf, queer experience is used as a vector for examining the use of coming out discourse in Disability Studies and how the Deaf experience may relate to the broader category of disability. And while it contributes to the literature by including Deaf narratives, there is much more to be done regarding the intersection of Deaf and queerness that is not taken up in this paper. For example, how do these pathologizing experiences around one's body from infancy or early childhood affect the ways in which Deaf individuals see their queerness? How does becoming Deaf bolster the queer experience? For example, Kattari (2015) found that membership in the disability community enhanced the experiences of people who belonged to a sexual minority group. How might being Deaf strengthen one's queer resistance and identity? Follow up research on the Deaf and queer experience is needed.

Acknowledgments:

Data analysis for this research was funded by a summer research fund from the Women's, Gender and Sexuality Studies Program at the University of Connecticut. I also had ample help from graduate students Tara Fannon and Cristina Khan in the data analysis phase. Thank you.

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Endnotes

  1. Throughout this article, I use "persons with disabilities" or "disabled persons" interchangeably. Much attention has been paid to using "person first language," which stipulates that the correct language is "person with disability," placing the person first and the disability after. But there is no consensus within the disability community and no clear standard exists. The inconsistent language in this article reflects this reality. For further reading that advocates for "identity first language" (e.g. a preference for the phrase "disabled person") and discusses the flexibility of these terms, see: Charlton, 2000; Ladau, 2015; Linton, 1998; Sinclair, 1999).
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  2. Two other excellent sources of poetry, non-fiction, memoir and history are O'Toole's Fading Scars (2015) and Luczak's QDA: A Queer Disability Anthology (2015)
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