Abstract

This paper presents a case analysis from a larger research project surfacing visually disabled men's experiences of masculinity and disability in everyday life. Using the Listening Guide, a voice-centered relational method of narrative analysis, and the work of Erving Goffman and Critical Disability Studies, I present Will's story of self-exploration and illuminate how he navigates and negotiates relationships and social life in American culture, where masculinity and disability are commonly constructed as irreconcilable statuses. This paper advances knowledge about the mutuality between identities and social-structural experiences, with impairment situated between these processes as an embodied tether, that gives meaning and provides nuance to one's understanding and experience of himself in the world as a visually disabled man.


Introduction

This paper presents a single case analysis from a larger research project in which two questions are asked: (1) What does it mean to be a disabled man in American culture, when masculinity and disability are constructed and represented as irreconcilable statuses? and (2) How are these meanings uniquely understood and experienced in the context of blindness and visual impairment? While disability and masculinity are the main identities under inquiry in this research, disability is a centerpiece. 1 As such, my goals are to (1) locate disability's diversity and intersectionality in the broader landscape of everyday life and (2) bring attention to the interconnected relationship between impairment, disability identity and disability as a "socially located experience" (Mauthner and Doucet, 1998). Using the Listening Guide, a voice-centered relational method of narrative analysis, and the work of Erving Goffman and Critical Disability Studies, I present Will's story of negotiating the intersection of disability and masculinity in everyday life. A young blind man living independently in New York City, Will talks about significant life events in which his voice and body become vehicles for a new and positive sense of self. Accessibility, boundaries and confidence are main themes that run throughout the story. Using Will's words and experiences, this paper problematizes dominant cultural constructions of disability and masculinity and diversifies their meanings. Relatedly, it offers a more nuanced picture of the relationship between them, in part, by highlighting how they are formed and tethered by the social-structural experiences of disability. This paper also illustrates how disability and masculinity, sometimes but not always at odds, are reflections of a dynamic self, shaped by interpersonal and social relations. I begin with an overview of literature and methods, follow with my findings and conclude with a discussion outlining emergent themes recommended for future research. Findings are broken down into several sections starting with Will's story in context and moving onto analyses of the significant events in his life.

Literature

The ambiguous quality of identity has led to different ways of defining it in the social sciences and humanities. Definitions range from a synthesis of interior and exterior parts emerging out of identification and differentiation (Jenkins, 2005) and a subjective embodied event (Budgeon, 2003) to a series of fragmented meanings and actions pieced together (Hall and du Gay, 1996). Other writers capture the political quality of identity, defining it as a cause and effect of political action (Benhabib, 1998) or a function of political recognition (Taylor, 1997). A point of consensus among scholars mentioned is that identity is a social-relational process that is changeable and contextual; political and personally complex. Individuals carry multiple identities, both claimed and ascribed, with their own social scripts, that intersect and get folded into one another to produce an embodied sense of self (Schippers, 2007). We know from Black feminist scholarship that identity categories of race, gender, sexuality and ability, for example, position people very differently. That is, our identities which correspond to status categories come with greater or lesser advantage that is magnified at the intersections, forming interlocking power imbalances in our social systems (Collins, 2007, 1990; Collins and Bilge, 2016; Crenshaw, 2016, 2015, 1989). This paper examines two such identities and status categories, masculinity and disability, as lived experiences often but not always at odds with one another.

Masculinity and Disability, irreconcilable or otherwise?

Masculinity takes many forms but there is a dominant construction around which these forms tend to organize (Connell, 2005a; Garlick, 2003; Lorber and Farrell, 1991; Miles, 1989; Schwalbe, 2014). Raewyn Connell (2005a) introduced the term "hegemonic masculinity" to conceptualize this construction as a unified set of ideal standards that men by-and-large are taught to value. The ideals of hegemonic masculinity, and meaning of masculinity more broadly, can differ across cultures and much has been written about this (Clowes, 2013; Connell and Wood, 2005; Dasgupta, 2003; Ghaill Mac an and Haywood, 2003; Hearn et al., 2012; Kumar et al., 2002; Morrell et al., 2012; Ouzgane, 2006; Ratele, 2013). In Western culture there are certain near-universal markers, such as strength of body and mind; assertiveness and confidence; competitiveness and success (Bridges and Pascoe, 2014; Brod and Kaufman, 1994; Connell, 2002, 2005b; Connell and Messerschmidt, 2005; Mosse, 1996). Hegemonic masculinity's power is consolidated by other status hegemonies, namely those mentioned above, and its imitation relies on separation from and superiority to the other (Donaldson, 1993; Hearn, 2004; Wetherell and Edley, 1999).

Masculinities studies is a growing field that continues to address a variety of intersections. For example, Jefferson (1995) writes about subjectivity; Collier and Walgrave (1998) about crime; Whitehead (1998) about morality and work; Pompper (2010) about appearance, age and ethnicity; Robertson (2006) about health; Seidler (2007) about emotions; and Clowes (2013) about cultural discourse and personal vulnerability. Some writers have focused on body image in boys and men (Courtenay, 2000; Grogan and Richards, 2002; Ryan and Morrison, 2009) while others on practices and modification of the body (Atkinson, 2006; Gill et al., 2005; Monaghan, 2014). As well, there is no shortage of writing about race, class, sexual and queer identities (see for example: Abelson, 2016; Bridges, 2014; Callier, 2016; Dashper, 2012; Powell et al., 2016; Ward, 2014).

Disability, however, is under-theorized and under-researched in Masculinities Studies and Sociology of Gender. Like masculinity, it takes many forms yet, as Goodley argues, it is constructed as "other" and "through direct recourse to [masculine and feminine] gendered norms and sexist practices" (2011, p. 36). As an image in culture, disability is represented as undesirable, vulnerable, passive and dependent (Gerschick and Miller, 1995; Goodley, 2012; Manderson and Peake, 2005; Shakespeare, 1996; Shuttleworth, 2004). These representations are a departure from that of hegemonic masculinity and, what Garland-Thomson (1997) calls, the "valued standard" of self, which is expressly non-disabled, self-determined and autonomous. Some writers suggest that disability is a socially defining status (Couser, 2006; Fine and Asch, 1988; Mairs, 1997; Murphy, 2005; Shakespeare, 1994). Because there is always a reflection between society and the individual, disability can also be self-defining. This has great relevance to the lives and livelihoods of all disabled people and to the study of disability as an identity and open social category.

The literature available on disability and gender intersectionality has mostly come from Disability Studies or interdisciplinary scholars in adjacent fields (see for example: (Gerschick and Miller, 1997, 1995; Hahn, 1989; King et al., 2019; Loeser et al., 2017; Manderson and Peake, 2005; Robertson, 1993; Scott, 2014; Sheldon et al., 2011; Shuttleworth, 2004; Smith, 2013; Smith and Sparkes, 2005, 2008c; Taleporos and McCabe, 2002; Tepper, 1999). As Gerschick (2000) points out, disability effects gender socialization and the experience of gender identity in meaningful ways. Disabled men may experience tension at the intersection of gender privilege and disability stigma leading to "status inconsistency" (Gerschick, 2000). This can lead to internalizing negative social attitudes about disabled bodies being inadequate and undesirable (Shuttleworth, 2004; Taleporos and McCabe, 2002; Tepper, 1999). Performing hegemonic masculinity is, at times, a strategy of resistance that contests the feminization of the disabled body and feelings of inadequacy and undesirability (Manderson and Peake, 2005). In other cases, as Gerschick and Miller's (1995) study shows, hegemonic masculinity is rejected for its limitations in favour of alternative masculinities or reformulated to be compatible with current perceptions and abilities. There seems to be an unspoken assumption, however, that disabled men's ability to accept disability in their lives is contingent on conforming to a hegemonic view of masculinity to avoid marginalization and subjugation (Manderson and Peake, 2005). While research in these areas are thin, what has been shown is that disabled men have valuable insight about what it means to perform identity where, as Gerschick and Miller (1997) say, the expectations of a dominant status meet the differences and demands of a marginalized one.

A Critical-Interactionist Approach to Identity and Lived Experience

This research applies the work of Erving Goffman and Critical Disability Scholars to examine the relationship between masculinity and disability as identities and lived experiences shaped by relationships, culture and social-structure. Goffman did not identify as a symbolic-interactionist, and in fact rejected labels generally, but his work is in that tradition. As with theorists who did identify with the tradition (Becker, 1963; Blumer, 1986; Cooley, 2009; Strauss, 1997), Goffman wrote extensively about the relationship between self and society, positioning identify in between and characterizing it as a "means of differentiation" around which a "single continuous record of social (and biographical) facts can be attached, entangled, like candy floss" (Goffman, 1963, p. 74). Identity, according to Goffman, is entwined with a sense of self that is dialogic (relationally constructed) and polyphonic (many-sided). It is a version of the self that is neither ethereal nor shapeless but an effect of context and relations (Jacobsen and Kristiansen, 2014, p. 111), a "dramatic effect" that emerges "diffusely" in social interaction (Goffman, 1959). Goffman is concerned with the tension between impressions of authenticity and facade and how impressions are managed in social interactions. In his analysis, society is constrained by the "interaction order," the dominant identity norms and attendant moral codes that govern society, because its disruption can have negative consequences, like stigmatization and social disqualification (cited in: Jacobsen and Kristiansen, 2014).

Individuals are inclined to make an impression of themselves that is socially acceptable and do so by controlling the information others have about them (Jacobsen and Kristiansen, 2014). According to Goffman (1963), this can mean using performance dis-identifiers, behavior that disrupts the coherence between stigma attributes and stereotypes, or disassociation from other stigmatized individuals and affiliation with those of a socially credible status. Individuals might also control information by "covering" or "passing" and which of these is used depends on whether the source of stigma is visible to others or not (Goffman, 1963). When the source is known only to the person, and credibility is less likely to be suspected, passing is favorable (Goffman, 1963 pp. 92-93). When the source is immediately perceptible or apparent to others', and passing therefore less believable, covering is preferable and managed by concealing "stigma symbols" (immediate and discreet visual identifiers) or "overcoming" associated stereotypical failings through behaviors of compensation (Goffman, 1963). Not all individuals seek to conform to society's standards or feel the need to cover or pass personal attributes that are socially stigmatizing. Resisting or rejecting dominant social norms, especially among marginalized populations, can be a powerful form of agency and activism as well as a basis for in-group solidarity.

Examples of disability feature in Goffman's texts on Stigma (1963) and Asylums (1961), with a focus on mental illness. While he is somewhat of an exception within the symbolic-interactionist tradition, which initially ignored disability, he is critiqued by Critical Disability scholars for his handling of disability (Barnartt, 2016). Most notably, his body of work does not analyze the category of disability or parse the sociological reasons why it is stigmatized and, relatedly, it ignores the structural forces that shape conceptions of disability (Barnartt, 2016; Gleeson, 2002). According to Brune (2014), the absence of a coherent disability analysis of stigma in Goffman's work fails to recognize disabled agency and disabled people's resistance to stigma's negative effects. The same criticisms can be made of Goffman about all marginalized identity categories and oppressive structural forces. He is arguably an individualist who is firmly situated on the side of agency over structure. His body of work gives disproportionate weight to an otherwise non-descript individual independent of the status hierarchies and structural forces that shape everyday life, a criticism both Love (in Brune et al., 2014) and I share. Emphasis is on otherwise because, as Titchkosky (2000) points out, Goffman is unrecognizable to his privileged positionality as a normal of normals (a white, male, able-bodied presenting person). I agree with this criticism to an extent. Reading Goffman within the context of his time, he maintains distance from his subject but his analysis still lack an intersectionality that in current times comes across as a lack of self-awareness and reflexivity.

Scholars of Critical Disability Studies (CDS) re-imagine Goffman's concept of stigma, thinking of it as a structurally embedded by-product of social interaction, and apply it to research that gives voice to disability perspectives and lived experiences. In CDS, the embodiment of impairment is considered an important part of the disability perspectives and experiences, a departure from the social model distinction between the former, as a "functional limitation", and the latter, as a "socially generated system of discrimination" (Meekosha and Shuttleworth, 2017, p. 50). There is broad consensus, therein, that disability's diversity is its intersectionality with other identities yet [because its status as an identity is still debated in Disability Studies] it remains on the margins of research in other critical fields (Goodley, 2012). Working from here, CDS brings all the components of disability experience together, proposing that disability identity is integrated with impairment, by way of the body, and rooted in a shared understanding of what it is and means to be structurally disabled in/by society. A purpose of this work is to represent the diversity within the wider disability community and recognize the fullness of disabled peoples lived experiences beyond those just related to disability, which this research aims to do.

Data and Methods: Giving Voice to Everyday Life

In the larger research project, data was collected from seventeen in-depth interviews which took place face-to-face and over Skype. It was my aim to create a transparent and open context in which participants could talk about whatever was important to them within the scope of the research. An interview guide with topic points was kept to-hand. Variations of the same questions were asked in no particular order to allow the stories to unfold as organically as possible. Before the interviews, I took steps to create an open, transparent context by providing demographic information about myself, e.g. race, gender, ability and place of study and recapping the focus of my research. With this space created, to prompt the narrative, the men were asked why they chose to participate in this research. This gave me a sense of what was meaningful to them in relation to the topics. All interviews ran 60-90 minutes and participants had the opportunity to review their transcripts prior to analysis to make redactions and/or elaborate on points made, and 5 out of 17 participants did so.

Narrative inquiry is applied in this research and selected because of their ability to surface the stories behind our stories. Narrative methods have many benefits within and beyond the research context. They help contextualize how identities function ontologically as lived experiences and social-structural arrangements (Gallagher, 2005). They also provide a way of understanding how people interpret and make meaning out of their lives (Riessman, 2008). Narrative methods are fitting for critical disability research because of the potential to bring visibility to marginalized experiences and to make space for self-representation and activism (Bérubé, 2005). To this end, they can be a resource for social change, to create awareness through alliance building between communities, organizations and institutions, that initiates policy discussions that more pointedly meet the needs of marginalized communities. In this paper, I apply the Listening Guide, an application of voice-centered relational method of narrative analysis (VCRM), introduced by Andrea Doucet and Natasha Mauthner (Doucet and Mauthner, 2008; Mauthner and Doucet, 1997). 2 VCRM is based on relational ontology, which recognizes the centrality of social relationships (Jankowska, 2017) and favors the notion that selves are not separate and independent, but embedded in a complex web of interpersonal and social-structural relations (Mauthner and Doucet, 1997).

The Listening Guide employs four stages (or readings) of the interview transcripts and results in four stages of data interpretation all meant to disentangle this web and surface the distinct voices that emanate from the self in one's narrative. At each stage the researcher listens for unique and significant layers and connections between micro-, meso- and macro-voices composing the narrative. The first stage is taken in two steps. The researcher initially notes major plot-lines illustrated in the story as significant or stand-out experiences and relationships and marked by imagery, metaphor, moral language, voice tonality and verbal fillers. Next, the researcher applies a 'focused reflexive reading' by noting her personal feelings and responses to the speaker's words and where and how emotional and intellectual ways of knowing might be shaping data interpretation. The second stage of analysis is concerned with how the speaker represents the self in the 'I' voice and when and in relation to what there is struggle to communicate. The 'I' voice is significant because it distinguishes the self from other selves and creates a boundary between the speaker, who they know themselves to be, and the listener, who brings their own ways of knowing to the interaction (Paliadelis and Cruickshank, 2008). The third stage is concerned with how sense of self is constructed in relationship to other selves and how, as Somers (1994) writes, individuals make meaning out of their interactions with and among others. The final stage is concerned with how self-representation and relationships with others are structured in and by broader social narratives and cultural contexts. The Listening Guide method results in a robust and synthesized analyses of the different layers (voices) of narrative that connect selves, relationships and lived experiences in the frame of one's life.

The first stage of the Listening Guide was applied to all seventeen interviews. A contextual overview, documenting significant experiences for each participant, was created in preparation for case study selection and further analysis. Cases were selected for their similarities and differences across identities, biographies and lived experiences and for containing striking elements of change, and tension between embracing and resisting disability. In my analysis, applying subsequent stages of the Listening Guide, I let these experiences of change be a frame for a fuller, more nuanced picture of disability/masculinity intersectionality and lived experience. For each stage, this entailed going between interview transcript and recording, reading and listening, while color-coding text that corresponded to the different narrative "voices" and documenting initial analytical and reflexive memos. This process was developed into a more fulsome analysis of each case study and written up as an integrated narrative reconstruction that begins with a contextual overview and moves onto an analysis of significant events, presented as mini-stories in sections. This paper presents a narrative reconstruction of Will's story, 3 one of three cases studies. It was chosen as the focus of this article because it meaningfully conveys a fluctuating relationship to disability and masculinity as identities, based on the presence or absence of disability in the environment as visual and material barriers. What stands out most, when considering the objectives of this paper, is that disability is represented as both a positive and ordinary human experience that can and does co-exist harmoniously with masculinity. Presenting a single story, captures the full scope of voice-centered relational analysis and gives readers a more complete picture of the distinct yet interconnected voices that comprise a person's story.

Introducing Will: A Story in Context

At the time of this research, Will was in his mid-twenties. He began losing his sight as an infant and is now almost totally blind and uses a cane for navigation. Will and I spoke on two separate occasions both of which, according to him, were opportunities to explore his disability and masculinity identities. By our second conversation several changes had happened that he was eager to talk about, the most significant among them was getting a full-time job in the disability sector. Previously Will worked part-time from home in a tech job that was financially unstable and lacked any promise of advancement. His new job is completely different. While secure and well-paid, it requires a different set of skills and a 9-5 schedule in a shared office environment. The change and transition presented situational challenges that facilitated the courage, confidence and adventure to pursue new experiences in his relationships and social life.

Disability conflicts with Will's understanding and experience of being a man when he is reminded of his disability either in his relationships or by his social environment. Conflict between two culturally irreconcilable identity states is what Garland-Thomson (1997, pp. 114–115) calls an "illegitimate fusion of statuses." These moments are neither static nor constant but, relational and contextual, tied to oppositional embodiments and their moments of impasse in lived experience. Experiences that stretch Will beyond his comfort zone, what he calls "tests of character," break through these moments and make him feel more confident in himself and about his disability. The following sections examine some of these tests of character, starting with finding a full-time job and moving on to becoming an adaptive rock-climber and attending an accessible sex-positive party.

Using Voice to Manage the Presentation of Self/Other Subjectivities at Work

Finding full-time employment changed Will's life in many ways. It has given him confidence, financial access to new experiences and the opportunity to serve the disability community. Part of his job is to provide housing referral advice over the phone to disabled people. At first it was challenging; Will's lack of self-confidence and empathy for other disabled people made it easy for callers to dominate the conversation and, in some cases, insult or excuse him of not caring about their needs. He felt his performance was suffering and was convinced it would affect the security of his job if he did not change his approach to one that was more assertive. Will has what Goffman (1959) calls a "dramatic realization." He sees the change as a moral duty, stating: "that's what I had to be", and comes to realize (and embody) the authority of his position through acting on it. The following passage picks up on this:

"It takes a lot to you know, to be able to take control of the conversation with most of these people. And even when they do try to take it there, I now, I'll either raise my voice, you know, I'll never curse at them or I'll never be rude, but I will have a, like I'll have a sternness in my voice, which is something I've…nothing I've done in my entire life. I haven't been one to…I've always avoided situations where I'd have to confront somebody or stand, you know stand my ground. I've always been able to find, you know, a way not to do that. So, now you know, I've effectively developed that skill which also just gives me confidence when I'm talking to people all around."

Will speaks in "contrapuntal voices" (Mauthner and Doucet, 1998) of past and present tense to differentiate between who he was and who he is now. The past-tense voice represents a part of him that avoids relational discord and the present-tense voice represents a part of him that is willing to speak up. Rather than being in competition, as contrapuntal voices can be, they follow a side-by-side melodic curve (Gilligan et al., 2006) that narrate a situation of personal change. I hear them as reflections of a tension between different, sometimes oppositional, subjectivities of Self and Other. We hear this tension balanced in Will's own words and behavior. Referring to callers as "these people" and using sternness of voice, cautiously, establishes a boundary and conveys information about roles and power dynamics without being disrespectful.

Will's approach in challenging situations, like at work, illustrates how masculinity is used to make "an impression of legitimacy" (Goffman, 1959, p. 56). At another point in the story, he states that a man is "…someone who's respected, takes charge and protects, not someone who's treated like an infant or regarded as fragile." Connecting to the cultural voice, as Will does in this statement, illustrates how we reflect dominant identity culture, its expectations and hierarchical positioning. To "take charge," as a man, is the same as Will taking control of the situation and standing his ground at work. These behaviors are all about agency, boundary making and self-respect, being respected, and their performance solves, what Russell Shuttleworth (2012) calls, the dilemma of disabled masculinity, the social construction of culturally irreconcilable statuses. Ultimately, this is what Gerschick and Miller (1995) surface in their study of disabled men, some of whom lean into hegemonic masculinity to counter feelings of inferiority and gain social esteem. All people perform dominant identity norms in different contexts, whether true of themselves or not, to come across as credible. In my observation, Will is no different to others when using masculinity in the work context (and beyond) to shape social perception and subvert the cultural implication of disability fragility and infantilization.

Rosemarie Garland-Thomson writes, "nowhere is the disabled figure more troubling to American ideology and history than in relation to the concept of work: the system of production and distribution of economic resources in which the abstract principles of self-government, self-determination, autonomy, and progress are manifest most completely" (1997, p. 46). This quote, juxtaposed with the next passage, brings into clearer relief the impact finding full-time work has had on Will's life and livelihood.

"…just having a full-time job, I think is done a lot for that, for my confidence. And, you know, making me feel like less…insecure about the things I, you know feel insecure about. Now I feel like I'm on par with people, and a contributing member of society. I'm working and making things happen like all my friends are."

Status-based aspects of work, such as occupational prestige, compensation and fulfilment, and structural-based aspects, such as creative autonomy, safe working conditions and quality of life improvements, are significant to psychological well-being (Brown and Moloney, 2019, pp. 98–99). Employment is one of the single most important issues among disabled Americans. Notwithstanding, they continue to face significantly high un/underemployment to different degrees across other status categories (Maroto and Pettinicchio, 2015). As Sunny Taylor (2004) explains, disabled people's varied abilities make it difficult [and inconvenient] for them to be incorporated into mainstream society, because of the costs incurred and profits lost. The result is far-reaching material and social consequences, not to mention social stigmatization. Those who do not or cannot work, because of disability, are quickly dismissed as lazy or incompetent and their access to social welfare is described as free-loading.

Work has symbolic and social value; it gives access to material needs and desires and gives life broader meaning and purpose. Disabled people are not excluded from wanting or deserving a part of this. We hear it reflected in Will's words. Phrases like, "contributing member of society," "on par with people" and "making things happen," resonate with an individualist construct of "work" that, in the United States, translates to dignity, personal responsibility and, as the way to achieve a quality of life associated with the American Dream, a prime indicator of success. This way of thinking about work is ableist and by default gendered when we consider that dignity is tied to self-reliance and masculinity, not only constructed as able-bodied and productive but as economically self-sufficient (Smith and Sparkes, 2008c). So, while masculinity and ability are not directly named in this passage, or brought up in its context, it is worth noting that evidence of their influence stands out in the language.

Performing the Sensory Body-Self in Adaptive Sport

Will has been doing adaptive rock climbing since 2013. The sport gives him access to the full extent of his body and allows him to experience it as one of agency. In the process of becoming a better climber, witnessing his competence, he is subjectively (re)placed by a changed body-image (Manderson and Peake, 2005, pp. 233–234) that extends to a more confident disabled self. We talk about it in the following exchange.

Will: So, I've been rock climbing again. I'm liking it.

T: Yeah? Cool! I didn't know that you were a rock climber. How long have you been doing that?

Will: Since 2013. Uh, there is an adaptive climbing group in Brooklyn. And um, you know uh, it, it's uh, I wouldn't say I'm advanced in any way, but for a beginner you know I, I've been doing it for a while and, and I'm getting better at it. And I think I can, I can probably compete at some point.

T: And has that also changed the way you experience your body?

Will: Yeah, definitely because the kind of movements and positions I end up in on the wall to get to the next point you know it's, it's definitely a way for me to move differently and, and um… There's a lot of you know confidence there too. Confidence building. And I'm doing an athletic activity regularly, which I haven't done since I was in Egypt, since I was a child. So, and I'm doing something that people consider you know a little bit difficult. So that's another thing that makes me a little bit more confident. It builds my confidence. And um, and when I go and I climb and I, sometimes I do well, people will give me compliments and so that also just builds my confidence. It's not you know something I've experienced a lot when I was younger. And uh, it helps you know.

Self-doubt and its twin poor self-esteem are common among people whose bodies and minds are repeatedly invalidated and devalued by society (Loja et al., 2013). Scaling a wall (or rock face) is like a physical puzzle that requires physical strength, the senses and mental focus. The ultimate skill is coordinating these functions, which involves Will suspending any doubt he might have in himself and his partner, the belayer (person guiding the ropes). Feeling the new and different movements created by his body when climbing pushes him past a threshold of self-knowing and promotes a sustainable "subjective wellbeing" (Smith, 2013, p. 115). The physical difficulty of performing the sport empowers Will through disproving his perceptions of physical inadequacy and validating his capabilities (Huang and Brittain, 2006). The 'performance of difficulty,' and doing a sport that is known to be hard by most people's standards, demonstrates a competence of capability that is recognisable to others and reinforced through external validation. The reciprocal quality of these events, what voice-centered relational methodologists call the "self-in-relation to other working in practice," tempers feelings of doubt that cause fluctuations and contradictions in subjectivity and identity (Mauthner and Doucet, 1997, p. 21). The mutual self/social benefits of adaptive sports as well as the draw-backs have been well-documented (Brittain, 2004; DePauw and Gavron, 2005; Doll-Tepper, 2002; Huang and Brittain, 2006; Martin, 2006; Peers, 2018; Peers and Goodwin, 2012; Purdue and Howe, 2012; Saxton, 2018). As benefits go, they provide a context for self-(re)definition, and the reversal of stigma, and a forum for community identification, and solidarity, with people who share a counter-normative respect for and acknowledgement of body-mind differences (Peers and Goodwin, 2012, p. 193). More broadly, adaptive sports are a powerful act of agentic resistance to non-disabled stereotypes of disability weakness and passivity (Saxton, 2018) and to ableist structures that perpetuate inequality, exclusion and oppression (Peers, 2018).

Navigating Discontinuity between the Disabled Self and Inaccessible Society

As cities go, New York City is not that accessible and its impact on disabled people's lives is far-reaching. For more on this, see Jessica Murray's work (Murray, 2017, 2014, n.d.). Navigating the streets can be a risky and laborious task with ongoing construction and road works obstructing side-walks and forcing people into the streets with all manner of moving vehicles. Audible pedestrian signals are a rarity or drowned out by surrounding noise. Public transportation overall is sub-par. While buses are now 100% accessible, elevators and escalators leading to subway platforms are frequently out of order if they even exist at all. 4 The platforms themselves are overcrowded and sometimes too narrow to navigate safely and subway announcements on older trains are almost always inaudible. These are just a few examples, some of which are daily reminders to Will that his environment is not built with his body in mind, and it has a direct and changeable effect on his relationship to disability. In the absence of barriers, Will is more positive about disability, but when barriers are encountered he blames himself for being, as Garland-Thomson (2002) puts it, out of sync with his environment. He walks readers through an experience encountering barriers.

"There are a lot of situations where things are accessible and I have a great time and you know I am happy and like, really disability doesn't affect me at all. But, in a lot of situations the accessibility is not there, either the social access or the physical access or virtual access. And so, unfortunately, I still experience that a lot, you know even on my way to work there's just one long block on Frankfurt Street, right where I get off at the Brooklyn Bridge. It's just one straight shot, but it's sort of not very straight, and there's obstacles in the way. I've been going down that block and having trouble with that block for eight months every day. It's like I haven't memorized it yet you know, and I'm still encountering new obstacles that I've never encountered before. It's not very straight forward and it's confusing and I've been having trouble. And at one point, and it was very recent, you know eight months into going to work, I was crossing that street and somehow instead of getting to the middle I ended up walking parallel to the traffic and on a totally different corner. I was so disoriented, you know and it just like, things like that really like can take any confidence that has been building for weeks or months and just you know, plummet you know."

To get a deeper sense of Will's inner voice, following this passage, I ask him what goes through his mind in these moments. He starts by saying "a lot of anger," but stops and says, "a lot of confusion and frustration at himself." Will blames himself for something that is so clearly society's failure. Like so many Americans regardless of status or circumstance, Will is reflecting the culture of individualism, which involves blaming individuals for not living up in one way or another (Peuravaara, 2013). Blame is turned into personal responsibility and asking for help is considered a weakness in a culture that prizes, returning to Garland-Thomson's quote, "self-government, self-determination [and] autonomy." Will wants to rely on himself and is determined to rely on himself, so much so that he resists asking others for help even in moments like these [he later discloses]. Will describes moments when, without him asking or giving consent, he is grabbed and taken across a street or hastily ushered onto a bus. Moments like these are startling and dehumanizing and leave him feeling embarrassed and deflated. Disabled people are represented as dependent and weak which translates to an assumption that they need/want help with the most basic of tasks. Men, in contrast, are culturally cast as the individuals with abilities that preclude any need [or desire] for help. Disabled masculinity is an oxymoron (Manderson and Peake, 2005, p. 234), an irreconcilable dilemma in a culture of individualism. Not asking for help is sometimes a compensatory behavior enacted by disabled men to subvert the presumption of weakness and dependency (Smith, 2013). In Will's case, I hear his frustration and reluctance to ask for help not as a reaction to diminished masculinity but as boundary-making and virtue signaling his self-reliance in a culture that demands it regardless of status or circumstance.

Gaining Access to Sexual Agency at an Accessible Sex-Positive Party

Navigating the world as a blind person underscores the cultural centrality of sightedness and highlights a different kind of barrier to access, one of interpersonal relations (Garland-Thomson, 2009; Kleege, 1999; Michalko, 1998). Mainstream social life uses what Goffman calls "conventionalized discourse" (1966, p. 34), normative social impressions that include implicit rules of engagement and rely heavily, but not solely, on "body idiom," ritualized, non-verbal communication (Goffman, 1966). Mainstream conventionalized discourse assumes that all body-minds appear and function normatively and according to social order. For this reason, Will seeks out sensory-inclusive, consent-positive experiences with clear and explicit rules of engagement. Knowing ahead of time what to expect in social situations, readies Will and puts him on equal footing with the confidence to be present and expressive in his body. He relates this to the time he attended an accessible sex-positive party. The stated rules about understanding and respecting consent and including all body-mind interests and abilities appealed to him. Picking up on this in the following passage, Will gives an account of meeting Bill, his guide for the night, and having a spontaneous three-way interaction with him and a topless woman named Gina.

"I got oriented with the space and uh, it was a relatively big space. It wasn't huge but it was big enough where I, you know didn't feel like super confident getting around by myself. But um, also just had my guide and he was a really good person and like he was just a good guide and he respected my boundaries and he didn't touch me at all…and you know upon my request, and I told him like I only like verbal directions and he would do that…we got along well…you know he facilitated any kind of social acts like any tours and like, or explained things or described things when he thought it was relevant. One of the people that were kind of like volunteering was talking to us, talking to me. Her name was like Gina, and you know Bill (the guide) in the middle of our conversation tells me I think I should tell you that Gina is topless (Will laughs). You know something I, something I wouldn't have known because you know I'm blind (Will laughs). So, you know he was just like facilitating that access and then she goes, um she said yeah if you give your drink and your cane to Bill you can totally feel me up. And so, I did that, and you know it was great. In a way that was just like, it was giving me that access you know like, just you, everyone else could see you know and I, I'm sort of under stimulated in that way. It wasn't even about like something perverted, you know just sort of experiencing and access. So, you know and she was, you know, beautiful and I got to feel her and that was it, you know. And it's not like it was anything more than that. And then I went on my way in the party."

The first way the passage is unique is in how it portrays disability and impairment when there are no barriers to speak of. The casual way Will reminds the listener-reader, with a laugh, that he is blind blurs the binary between blindness and sightedness and the straight-forward way in which consent is addressed and access made possible, through a third party, conveys an easy relationship to disabled embodiment. By speaking in the active "I," Will establishes a central role in the spirit of the experience that acknowledges his agency and autonomy. Toward the end of the passage he shifts into a "relational subjectivity" (Gilligan et al., 2006) but is not taken over by it when juxtaposing, rather than comparing, blindness and sightedness. His tone is not oppositional, but constructive, when recognizing his experience in relation to other experiences similar and different. The passage in its entirety, I would argue, shifts the meaning of blindness away from being an experience in the negative, opposite to sightedness, toward one that is ordinary, legitimate and uniquely, what John Hull (1992) calls, a 'world creating condition all its own.'

A second way this passage is unique is in its moral tone and "business-like" description of the interaction that rationalizes and normalizes the context for the speaker and listener-reader (Lamont and Molnár, 2002). The statement, "it wasn't even about like something perverted," although said in passing, is an example of principled boundary-making, in the narrative, that demarcates between normal and deviant sexuality. Despite the increasing visibility and acceptance of the kink community and sex-positivity, sexuality is taboo in much of Western culture (Namaste, 1994). American society is of two minds on the subject; call it having a "front stage" and "back stage" viewpoint (Goffman, 1959). These viewpoints, rooted in the puritanical history of Western Europe and the sexual revolution of the1960's have been fertile ground for a split-culture of sexual repressiveness and hyper-sexualization (Foucault, 1990). To this end, celebrating, exploring and expressing sexuality, particularly when overt and with other people, is "perverse" by mainstream American standards. It results in stigma of both extremes and a need to manage both simultaneously in some cases, such as this one. The presentation of two different "faces" (Goffman, 1959), This is complicated further by the de-sexualization of disabled bodies and the assumption that disabled people are sexually disinterested or dysfunctional (Kafer, 2013; McRuer and Mollow, 2012; Milligan and Neufeldt, 2001). In this environment, that welcomes diversity, Will has agency over his sexuality; he can be interested without doubt or question and is free to explore the full extent of his sexual sensory body. Experiences like these, not entirely dissimilar to the overall purpose of adaptive sports, validate disabled people's diverse body-minds by, in this case, recognizing, accepting and valuing their sexual agency, interests and expressions and challenging the non-disabled world to do the same (Gillespie-Sells, 1996).

Discussion

Will's story reflects some of the themes and findings in the disability and masculinity literature and makes its own unique contributions. Masculinity and disability co-exist and conflict with one another and appear as negative and positive identities depending on how much Will experiences disability outside himself. The language of individualism is woven through Will's understanding of what it means to be a man, illustrating its cultural overlaps with dominant masculinity discourse. Performing hegemonic masculinity to compensate for feeling like less of man is a strategy of impression management that uses a more "credible" status to get past disability being a barrier to self-confidence, determination and meaningful participation in social life.

Learning to assert his voice in relationships, becoming a skilled adaptive rock climber and exploring his sexuality at an accessible sex-party ["test of character"] are experiences that break a cultural and contextual impasse between irreconcilable identities (and embodiments). These experiences are less about Will proving or asserting masculinity and more about performing and accepting disability [the visually disabled body]. Exploring the sensory and sexual body mend the relationship (and reflection) between body, self and society by providing a context for personal redefinition, through an unquestioned, unfettered exercise of agency, and a context for social-relational recognition and equity.

Boundary-making, accessibility and barriers are peripheral overlapping themes in Will's story that are worth exploring further in critical disability research. His story illustrates how boundary-making is a way of getting around inner and outer barriers in different contexts to access (and express) agency and assert autonomy. This is a reminder that, how disabled people experience access, to what extent it recognizes and respects their agency and autonomy, is just as important as having access to the experience itself when both agency and autonomy are so frequently violated and/or denied. The "how" one experiences is related to "accessibility" which, Alice Wong (2018) writes, is about more than just enacting laws and implementing structural change; it is an ethos that recognizes, values and accounts for different ways of being in the world that. This means thinking critically about the relationship between boundary-making, agency and accessibility. This requires also thinking more broadly about access and barriers beyond the forms they typically take in the social-structural environment to those of a subjective and interpersonal quality, how they are specific to the experiences (and embodiment) of impairment and shaped by intersecting cultural demands and expectations of various kinds.

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Endnotes

  1. Of my identities, I am most aware of being a sighted/non-disabled person. I believe this position provides me more power and visibility than my gender costs me. I say this knowing that able-bodiedness is socially constructed as a fundament of healthy society and life worth living. In this context, there is little to no room for disability to be thought of as a positive and valuable identity and human experience, if even thought of at all. Bringing attention to disability identity and lived experience is both instructive but meaningful. As Tobin Siebers writes, "While people with disabilities have little power in the social world, their identities possess great theoretical power because they reflect perspectives capable of illuminating the ideological blueprints used to construct social reality" (2004, p. 8).
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  2. In this research project, three stories are interpreted using the Listening Guide and presented as narrative case studies and the remaining fourteen stories are interpreted using Catherine Kohler Riessman's (Riessman, 2008, 1993) application of thematic narrative analysis, combined with aspects of VCRM, for methodological continuity.
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  3. All names used in this research have been changed to pseudonyms to protect anonymity.
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  4. As of 2019, 117 subway stations out of 472 in New York City are equipped with elevators.
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