Title

Radical Psychology
2007, Volume Eight, Issue 1

Pride and shame: Orienting towards a temporality of disability pride

Eliza Chandler [*]

To arrive as a self-defined people, disabled people, like other marginalized people, need a strong sense of identity. We need to know our history, come to understand which pieces of that history we want to make our own and develop a self-image full of pride (Clare, 1999, p. 90).

We live in a culture that commonly interprets disability as a “problem in need of solution” (Mitchell, 1999, p. iv). This forms the grounds from which ‘disability pride’ can emerge, offering the possibility of alterities in which one is no longer forced to live in shame of their disabled embodiment. The possibility of developing a bodily relation full of pride may appear as a strangely unthinkable concept when the seemingly embodied contradiction of disability pride is stumbled upon for the first time. However, my experience tells me that the more time one spends with this conceptual possibility, the more likely disability pride is to transform from an unthinkable concept into an attractive way of “being in the world” (Sartre, 1958). Through disability pride we can come together in communities, develop cultures, work out subversive and reclamation languages, and establish a personhood of ‘disabled people’ as an alternative to a disconnected population of ‘people with disabilities’. For the hopeful and transformative ways of living as a disabled person that it inspires, I believe disability pride should be accessible to all disabled people, regardless of their current and also shifting relationship with their embodiments.

If a prideful person is always and only described as one who has a consistent satisfaction with their embodied identity -- one who would not wish to be in the world in any other way -- what happens to those of us who sometimes, or all the time, are annoyed, frustrated, pained by, tired by, fed up with our disabled embodiments? In a time when we may need disability pride the most to provide comfort, hope, or a consciousness alternative to the one we may be currently living with, does this pride escape us? Are we denied disability pride when we do not measure up to the standard of a “normal” prideful person? These questions, arising out of my nuanced lived experience of my disabled embodiment, brings me to a sense of “disquiet” (Smith, 1999). I wonder how, together, we might make a new disability pride emerge that does not elide those of us who waver in our disabled embodiments from the imagination of the prideful person.

This article explores how a version of disability pride can materialize that is accessible to us all regardless of our current or ever-lasting relation to our embodiment. I begin this article by recounting how I was introduced to disability pride in my early twenties. Here, I explain why my relation to its description of a prideful person troubled me, for I am someone who does not always relate to my embodiment with pride. Following this, I discuss my performance To Look Back; a performance through which I explored disability pride on the street. This discussion illustrates how my process of coming into disability as a radicalized, prideful identity was not a straightforward avail of shame. I then analyze how disability pride is popularly articulated in North American disability culture. I critique this version not to suggest that we do away with it altogether, but to demonstrate how this articulation of disability pride is not inclusive of the lived experiences, desires and goals of an entire disabled personhood.

The later half of this article explores how disability pride can come to embrace one’s relation to their disabled embodiment that wavers between pride and shame.

I begin this task by analyzing two stories which describe having pride in presumably shameful embodiments. I present the first story -- a story of fat pride -- to demonstrate the potential limits and exclusions of a pride that imagines a prideful person as one whom successfully surpasses the stigma of their identity in pursuit of normalcy. I then explore a pride that can exist in togetherness with shame, one that embraces the experience of a wavering bodily relation, through Eli Clare’s writing on disability pride articulated through his lived experiences (1999). I conclude this article drawing on Clare’s articulation of disability pride to demonstrate how a pride that embraces the possibility of shame provides greater opportunity for all of us to align with disability as a radicalized and politicalized identity.

Disability pride: My introduction

I was introduced to disability studies in a basement classroom of the University of Toronto when I was 23 years old. I had not heard of “disability studies” before, only the “study of disability” in which my body was an object to be medically assessed by a doctor who was pursuing a solution for the problem that was my embodiment. This experience was uncomfortable and objectifying, as these doctors only viewed my body for its abnormal physicality. Therefore, I planned to stay as far away from the study of disability as possible. In fact, I planned to stay as far away from disability as possible, aside from the inevitable fact that it was my embodiment. But a course called “Disability and Social Change” at the University of Toronto taught by Dr. Rachel Gorman caught my attention.

In this class we were oriented towards disability arts, cultures, and communities through the readings steeped in disability studies. I was particularly caught by the described “disability communities” that were bound by the very ties that had previously cut me off from holding any sense of belonging. In the words, and worlds, presented in these texts “persons with disabilities” -- a minority population of embodied problems amidst a population of a nondisabled -- transformed into a personhood of “disabled people” -- a community of which I could finally be a part. Disabled people, I learned from these texts, could come together through our common experiences of embodying disability and flaunt our disabled embodiments with pride; a concept I understood and was excited by, in theory.

While I embraced the messages of disability pride that articulated my corporeality as a legitimate embodiment through which to negotiate the world, these teachings seemed to escape me on the streets where I most need to be with pride. Although inspired by the messages of pride and community, I continued to hide any noticeable signs of my difference for fear of embarrassment. When visiting cafes, for example, I pretended to not want coffee rather than bring the mug of hot liquid to the table and risk spilling it all over myself. Likewise, I paused before reaching out to grab something with my right hand with hesitant muscles to see if anyone was watching me. I did not want to be publicly perceived as a shaky body out-of-control, a fulfillment of the expectation for disability as nothing more than a problem.

Still, I desired to have disability pride when in the sometimes-troubling space of the public sphere. Disability studies taught me that there were lessons to be learned from disabled “minds, bodies, senses, and emotions” (Titchkosky, 2007). From this, I sought to engage in a public performance in everyday life in which I could use my bodily anomalies to engage the look my bodily difference receives and provoke the public to think differently about the diversity of corporeality. Moreover, I decided, an exploration with disability pride -- even a commitment to uttering these words -- must be an integral part of this project.

Disability pride: An artistic engagement

To explore how disability pride could connect to my bodily relations, I set out to explore this pride on the streets through an artistic performance To Look Back. My young, white, “walkie” (Clare, 1999), physically disabled embodiment -- noticeably disabled through my exaggerated gate and right hand that lingers a pace or two behind me -- often attracts looks on the streets by those who perceive bodies through sight. There is power behind these looks, as mine is a body understood as an object to be consumed. However, my publicly consumable body is complicated. As I embody both the markers of potentially desirable -- young, woman -- and potentially grotesque -- disabled and out-of-control -- my body wavers between corporeal binaries, and the looks my body attracts are often disrupted. For as long as I can remember, I have been aware of my body’s ability to make people pause with wonder, disrupting their typically passive gazes. In these ruptured looks there is productive potential in the “dissonance spaces between us” for these shifting looks to disrupt the normal/abnormal binary so often used to categorize corporeal normalcy, revealing its artifice (Garland-Thomson, 1997, p. 12).

Disability studies and feminist theory provide me with language to locate and identify the nuances of looking practices as gazes, stares, and, most often, something in between. Gazes, I understand, are passive, disengaged, consuming looks often falling upon bodies perceived as desirable and powerless by those who feel entitled to such consumption. Stares are different though. Stares, Rosemarie Garland-Thomson tells us: “fall on disabled bodies constructed as medical spectacles by those positioned as spectators” (2005, p. 56). Garland-Thomson continues, “staring thus creates disability as a state of absolute difference rather than simply one more variation of the human form” (2005, p. 57). The looker sees my visual embodiment of a contradictory identity, as my identity shifts from sexual to questionable before their eyes, allowing for the consideration of ambiguous identities.

I engaged in a public performance, To Look Back, for a couple of months with the intention of addressing the shifting gazes and stares that penetrated me in places where pride had not yet reached. This performance was a dedication to meet the shifting looks captured by my disabled body in a way that disrupted the assumed passivity of disability, and troubled the binary of “normal” and “abnormal” as meaningful ways to categorize embodiments.

Whenever I noticed such looks, I would meet the looking-other with a message of resistance to say:

I noticed your look, and I welcome it.
I want you to know that I am proud to be disabled.
In fact, everything I do is done with my disability, not in spite of it.

Through this dedicated performance, I came to identify my power as an embodier of difference. I intended my look back to assert that I was not just a problem to be stared at, or an object to be gazed upon; I was a disabled person to engage with. The look, I reminded my looker, was an interactional relation. My address back as the unexpected looker who noticed the look of the other often came as a surprise. And this interaction sparked dialogue; when our eyes met conversations often followed. We -- the two connected by the look -- talked about disability and about pride, and through these conversations I concluded that most people interpreted my message as my pride in spite of my disability, and not as a statement declaring pride in disability. I learned from this experience that we might not be able to measure the lasting effects of an artistic intervention aimed at provoking critical thought. We may never know if the public will interpret our intended meaning the critical messages disseminated by public art with. I hoped to provoke “new imaginations of disability” by reciting a message of disability pride in the public sphere and the messages I received back, articulating an interpretation different than my intention, established an imperative to continue exploring this elusive disability pride (Titchkosky, 2007).

Although I intended To Look Back to help me understand my relationship with disability pride, the performance left me feeling more confused. I was also left with the overwhelming sensation that I need pride to negotiate the world through an embodiment which public expectation seldom meets my experience. My experience tells me that disability is always already imagined as a problem regardless of whether or not this is an accurate description of the experience of one’s embodiment. I knew that living with disability pride could offer the opportunity to put lived experience of our disabled embodiments into conversation with popular imaginations of disability, which could forge new body narratives. I also knew that I did not want to be excluded from the opportunity for self-determination and the hope for alterity that disability pride offers, even if I was not always unwaveringly satisfied with my embodiment. In the moment of hesitation when I reach out with an unsteady hand which may, or may not, fulfill its intended purpose, I waver. I feel ashamed and I also need to be with pride. When I trip on the street in the midst of others, I waver. I feel embarrassed and I also need to be with pride. From these experiences, I know that I must create a pride without a normative standard, which constitutes my wavering body as an excludable type.

Disability Pride: North American roots

When crafting out a new disability pride for myself and for the disability community, I do not propose to do away with the popular conception of disability pride. The idea that disability is not something to be ashamed of is undoubtedly powerful, and is key to inspiring alliances with disability as an identity rather than as a problem to be solved. However, we must build upon the version of pride that emerged in conjunction with the North American disability rights movement, captured in the description below. I analyze this articulation of pride not simply to critique it but, to productively trouble the ground from which I suggest we emerge creating pride anew.

According to the website Disabled and Proud:

"Fundamentally, Disability Pride represents a rejection of the notion that our difference from the non-disabled community is wrong or bad in any way and is a statement of our self-acceptance, dignity and pride. It signifies that we are coming out of the closet and are claiming our legitimate identity. It's a public expression of our belief that our disability and identity are normal, healthy and right for us and is a validation of our experience” (Triano, 2009).

This description of disability pride is powerful and promising. Disability is an embodied experience that appears in our popular imagination as shameful, regrettable, and problematic. Resisting the idea that the “difference disability makes” is simply “wrong or bad” is a necessary starting point, which this declaration of disability pride provides (Michalko, 2001). However, such an articulation of “self-acceptance” and the desire for the recognition of our “disability and identity [as] normal” are not necessarily reflective of the myriad of goals and bodily relations of an entire disabled personhood. People, like me, whose relationship with their disabled embodiment wavers, are excluded from pride when the prideful disabled person is only and always imagined as those holding an unwavering satisfaction with their embodiment.

When the path from pride to shame is imagined as swift and disappearing, which of our experiences are we neglecting to tell? Are we, the wavering, disqualified from disability pride and all the possibilities it holds? Is this the end of the story? My analysis of this version of pride and my lived experience prompts me to wonder how I, along with other disability scholars and activists, might imagine disability pride in new ways. Disability studies offers a critical paradigm that asks us to be unsatisfied with the constitution of a norm, and challenges us to rethink the meaning of bodies deemed ‘abnormal’. Might disability studies also invite us to trouble the conceptualization of a “normal” prideful disabled person, and come up with more versions of disability? In this project of making a pride materialize anew we must hold close the popular imagination of disability pride, to wonder how we can establish new meanings, new possibilities, that seeks not to normalize disability, but to trouble pride.

Disability pride: Two stories

I now turn to the analysis of two stories to think about how pride can be simultaneously exclusionary and inclusive. In the first, pride is an actor that rises up from the ground of assumed shame. In the second, the two characters of pride and shame are curiously muddled. I tell these stories not for the “confidence game” (Mitchell and Snyder, 2007, p. 246) of critique, but rather to further explore pride through the “release” (Merleau Ponty, 1962) of stories of an uncommon pride experienced by others. I begin with a story of fat pride which I garnered through a “Google search” of the words “pride” and “shame”. By offering this story of a version of “fat pride”, my intention is not to draw a strict correlation between fatness and disability and the pride that emerges from these bodies, but rather to learn from these “family resemblances” (Wittgenstein in Mouffe, 2007, p. 2). I take this opportunity to explore how disability studies can be used as a paradigm through which we are able to think critically about other forms of embodied differences.

I located a family resemblance between fatness and the lived experience of fat pride and disability and the lived experience of disability pride, for both bodies are hegemonically interpreted as bodies of which to be ashamed. Carla Rice tells us, “despite growing dialogue about body acceptance, overweight and obesity increasingly are interpreted as unattractive, downwardly mobile, not physically or emotionally healthy, and lacking in body and self-control” (quoting LeBesco 2004 in Rice 2007: 240). Similar to fat bodies, disabled bodies have not yet been claimed as desirable and prideful under the rubric of “body acceptance”. Moreover, while not blamed for their out-of-control embodiment like fat people are, disabled people share in the common experience of negotiating the world in and through a body stigmatized for their unruly and unacceptable differences.

Fat pride: First story

This is a story by Jean Braithwaite, a self-described fat woman, is about a bicycle ride home from her workout. Braithwaite shares, “no one moo’ed at me” when describing this particular bike ride (2009). “Mooing” is presented as the always-possible interpretation of Braithwaite’s body. By physically exceeding the acceptable boundaries which determine a “healthy” body, fat bodies fall short of the normative standard of corporeality. As such, fat bodies are disqualified from the prerequisites for being constituted as prideful. Braithwaite is a type of body, a fat body, publicly (and also privately) claimed as inappropriate and grotesque, named by the indicative “moo”. The always-possible commentary released upon bodies interpreted as intolerably different -- “Moos” in Braithwaite’s experience -- leads to the potentiality of always being lurched out of one’s sense of being. From my experience I understand that “Moos” and likewise publicized interpretations encountered by the unprepared body may be startlingly shameful, perhaps even enough to be knocked off of one’s bicycle.

One might try to become conscious of the way her corporeality is perceived by others to guard against such disruptive acts of being lurched out of one’s sense of being-in-the-world on the streets. Intended for protection, hyper-awareness of one’s body can take many forms -- head down, quickened pace, averted eyes, clenched fists. It can also take the form of flaunting the body in prideful acts, resisting the “stigma” that is often attached to one’s embodiment (Goffman, 1963). One might hope to deflect looks and comments interpreting their body as shameful by “claiming” one’s body as always already prideful (Linton, 1998). On this particular day, Braithwaite rides along “claiming” her fatness with pride, as she says: “I was proud of the way I felt and imagined myself to look, speeding exuberantly along under my own muscle power. Surely anyone could see how thoroughly at home I was in my body” (2009). Claiming “fat pride” is subversive, for it disrupts the assumption that the experience of embodying fatness is a shameful one. This disruption of the assumed contradiction of “fat” and “pride” directs my attention to other contradictions that Braithwaite’s articulations of her embodiment and its activities within the world seek to disrupt.

Braithwaite continues her narrative of fat pride citing physical activities as the experiences from which her pride grows. She tells us: “My relationship with my body was no different from any other trained athlete’s…. I felt like a walking advertisement for fat pride” (2009). Braithwaite’s fat body no longer troubles the boundaries of acceptable corporeality for, as she carefully tells us, it’s repetitive engagement in high performance sport exceeds our conceptions of fatness. In other words, when fatness transforms from its assumed dormant origins, or norms, into an active body, pride can emerge. But what happens when a fat body does not overcome it’s own image to measure up to a norm of healthy fat bodies, but rather continues to embody a version of fatness that we identify as common? Does pride escape the commonly fat body? For a pride that is more inclusive of unsteady bodily relations, I turn to Eli Clare.

Disability pride: Second story

I first found a relatable version of disability pride in the words of Clare’s book Exile and Pride (1999). Clare begins his book with a narrative of climbing a tough mountain trail with a friend, and having to turn back because it was not safe for him to continue. This narrative represents how pride and shame can live together beneath one’s skin as a preface to a larger articulation of a disability and pride. Clare says:

I want to so badly but fear rumbles next to love, next to real lived physical limitations. So we decide to turn around. I cry, maybe for the first time, over something I want to do, had many reasons to believe I could, but I really can’t. I cry hard. Then get up and follow Adrianne back down the mountain (1999, p. 5).

This is a story of how unsteady bodily relations and body knowledges can lead to the imperative to succumb to one’s corporeal reality even when one’s desire is to continue. From my own body knowledges living in and through a body who sometimes resists the messages for movements I give -- sometimes to the point of full-stop -- I know that ‘fear’ is scary, ‘crying hard’ maybe shameful, and wanting so badly to do something but cannot because your body will not let you, is indescribably frustrating.

These are Clare’s stories of embodying Cerebral Palsy (CP) and when I read this passage my body responds because I know these feelings all too well. I also have CP. However, this story of frustration, disappointment, and regret inspired by bodily limitations is not without pride. There is pride in Clare’s telling of his dance of “slowly bringing both feet together, solid on one stone, before leaping into [the] next step” (1999, p.5). When he describes the descent down from the mountain as “hard and slow”, continuing, “I use my hands and butt often and wish I could use gravity as she does to bounce from one rock to another” (1999, p. 5). Here is pride. I understand this pride; it rumbles through my bones as well. This is a pride through which one can continue, if even if it is to continue down the path of bodily defeat. Clare’s is a pride that contradicts -- no, comforts -- the shame that lives inside of me.

There is no embarrassment, frustration, or annoyance that comes from my being that does not rub up against pride. When I trip on the sidewalk, shame may “stun me into recognition” (Paterson and Hughes, 1999, p. 603) of my “being in the world” as what Bhabha (1994) refers to as the difference to be different from to achieve a subjectivity of sameness. In this trip I am embarrassed that I have materialized as nothing more than a body out-of-control -- a fulfillment of the cultural imagination of the disabled body as living problem. Quite simply, I am ashamed that I have fallen. In this moment, shame may effect how I move, as I slowly lift myself from the sidewalk. In this moment of shame, pride has not left my body. Through pride, I can eventually keep moving down the sidewalk. If disability pride is only available to those who never are ashamed of their embodied way of ““being in the world””, I would not be able to walk on with pride. This interaction of pride and shame demonstrates that these two bodily relations can exist in togetherness. For this wavering between pride and shame makes up the reality of my embodiment, I cannot not be with a pride that does not embrace shame.

Disability Pride: new meanings

As we move through a world wrapped in a body that at times stigmatizes us, excludes us, or marks us as living a “problem”, and as we live in a disability that, at times, we regard as an uninvited guest, we eventually develop an intimate knowledge of and familiarity with the complexities of our embodiment. My intimate knowledge of my body’s ambiguities tells me a complete satisfaction with my embodiment is both unattainable and undesirable. My embodied experience wavers with joy, humour, pain, embarrassment, frustration, pride, and shame. While such bodily relations may be inconsistent with the constitution of a prideful being in its popular materialization, the disability pride I am proposing remains with us in troubling times.

Clare writes: “To transfer self-hatred into pride is a fundamental act of resistance” (1999, p. 92). This transference is mine and ours, and it is our way to resist the temptation of self-hatred as well as the hatred of others. Together, as a community of disabled people and our allies, we can take from the lessons of disability studies which tell us that the meaning of matter is never fixed, but always up for negotiation. From this we can craft out a disability pride that does not only exist in the abandonment of shame. By articulating a new disability pride that is accessible to us all, regardless of our bodily relations, we can inspire more of us to politically identify with disability as disabled people.

References

Bhabha, H.K. (1994). The location of culture. London and New York: Routledge.

Braithwaite, J. “Fat pride”. (2007). The Sun. Retrieved June 30, 2009, from http://www.thesunmagazine.org/issues/379/fat_pride

Clare, E. (1999). Exile and pride: Disability, queerness, and liberation (1st ed.). Cambridge, MA: South End Press.

Garland Thompson, R. (2005). Dares to stares: Disabled women performance artists and the dynamics of staring (pp. 30- 39). In P. Auslander and C. Sandahl (Eds.), Bodies in commotion: Disability and performance. Ann Arbor: University of Michigan Press.

Garland Thomson, R. (1997). Extraordinary bodies: Figuring physical disability in American culture and literature. New York: Columbia University Press.

Goffman, E. (1963). Behavior in public places. New York: The Free Press of Glencoe.

Linton, S. (1998). Claiming disability: Knowledge and identity. New York: New York University Press.

Merleau-Ponty, M. (2007/1962). ‘The phenomenology of perception’, In M. Lock, and J. Fraquhar (Eds.). Beyond the body proper: Reading the anthropology of material life (133-149). Durnam and London: Duke University Press.

Michalko, R. (2002). The difference disability makes. Philadelphia: Temple University Press.

Mitchell, D.T. (1999). Introduction. In Stiker, H. (Ed.). A history of disability. Ann Arbor: University of Michigan Press.

Mitchell, D. T., and Snyder, S. L. (2006). ‘Masquerades of impairment: Charity as a confidence game’ In Cultural locations of disability. Chicago and London: University of Chicago Press.

Mouffe, C. (2007). ‘Artistic activism and agnostic spaces’. In Art and Research 1 (2)

Paterson, K. and Hughes, B. (1999). Disability studies and phenomenology: The carnal politics of everyday life. Disability and Society. 14 (5), 597-610.

Rice, C. (2007). Becoming "the fat girl": Acquisition of an unfit identity. In Women's Studies International Forum. 30(2), 158-174.

Sartre, J.P. (1958). Being and nothingness. London: Routledge.

Smith, D. (1999). Writing the social. Toronto: University of Toronto Press.

Titchkosky, T. (2007). Reading and writing disability differently: The textured life of embodiment. Toronto; Buffalo: University of Toronto Press.

Triano, S. (2009). What is disability pride? Retrieved June 30, 2009, from https://www.disabledandproud.com/power.htm

Biographical note:

Eliza Chandler is a first year PhD student in the Sociology and Equity Studies in Education department at OIS/UT. Working in the field of disability studies, Chandler is interested in the interactions between pride and shame as they occur within the process of identifying as disabled. Chandler is also an artist; she engages public performances to interrogate the many ways her disability is interpreted on the streets.