Trauma “in the Neighbourhood”

By Hilary Pearson, M.Ed., Doctoral Student in Social Justice Education, Ontario Institute for Studies in Education, University of Toronto

Read more about Disability Matters ∞ Ways of Perceiving: International Conversations.
 

Introduction

This article offers a critical reflection of my experience as an invited panellist for the Disability Matters ∞ Ways of Perceiving: International Conversations conference held at the Ontario Institute for Studies in Education, University of Toronto (May 30^th, 2025). Dr. Tanya Titchkosky, one of the lead facilitators, invites participants to write a reflective piece to create a “living memory” of our experience (T. Titchkosky, personal communication, July 6, 2025). This article reflects on my presentation in the afternoon panel, Poeisis of Perception, and the touching impact of the conference. This piece explores a provocative moment highlighted by Tanya Titchkosky during the panel discussion. The four panellists (Matida Daffeh, Jeff Hall, Miggy Esteban, and myself) “share stories of encountering the often limited and limiting perceptions of disability that shape our everyday lives.” Tanya draws our attention to appearance of trauma—an unspoken theme across these stories. The following abstract excerpt describes the collection of works presented during Poeisis of Perception, 

Poeisis of Perception 

How we perceive disability and the taken-for-granted ways in which we enact that perception shape how we understand ourselves and our relations. Through this session, we share stories of encountering the often limited and limiting perceptions of disability that shape our everyday lives. In sharing these stories, we orient to perception as an act of poiesis—an act of creation that gestures to the possibility of telling different stories of disability mattering.

I consider the ways in which we (as disabled people) perhaps grapple with the dichotomies (King, 2003) often pushed upon us throughout our daily encounters and social interactions in contemporary Western society. These daily encounters present dominant narratives that perhaps reflect a collective set of normative “assumptions as to what the individual before us ought to be” (Goffman, 1963, p. 2). Such narratives ought not to go unexamined.

The Activist Archive: Refusing to Play Along

In situations where an individual is expected to feel and act in ways consistent with “a cruelly optimistic culture insist[ing] that we fake it till we make it” (Johnson & McRuer, 2014, p. 136), the (crip) killjoy “refuse[s] to go along with it” (Ahmed, 2010, p. 4). I interpret Sara Ahmed’s (2010) use of the term killjoy as a method for resisting normative expectations. Ahmed tells us,

A killjoy: the one who gets in the way of other people’s happiness. Or just the one who is in the way—you can be in the way of whatever, if you are already perceived as being in the way. Your very arrival into a room is a reminder of histories that ‘get in the way’ of the occupation of that room. […] The figure of the killjoy could be rethought in terms of the politics of willfulness. I suggested earlier that an activist archive is an unhappiness archive, one shaped by the struggles of those who are willing to struggle against happiness. (p. 8)

The consequences of “refus[ing] to play along” with “cultural instructions to be (or [to] act) happy [or complacent] in oppressive circumstances” (Johnson & McRuer, 2014, p. 136) appear to produce and reproduce narratives belonging to the unhappiness (or perhaps, trauma) archive of the willful activist. The “activist archive”, Sarah Ahmed (2010) asserts, “is an unhappiness archive, one shaped by the struggles of those who are willing to struggle against happiness” (p. 8). I wonder about the stories told during the Disability Matters conference, and how they might be interpreted as a contribution to this archive (an archive of contributions from the willful activist). An archive of stories “shaped by those who are willing to struggle against happiness” (p. 8) and by those who are willing to write about trauma. 

Thomas King: A Hopeful Pessimist

I wonder about the aftermath of such troubling (and traumatic) encounters (as explored in disability narratives) and how we confront the tension of refusal, and I wonder how the disabled individual is expected to negotiate their way through these encounters unscathed.

Perhaps these encounters reveal a kind of shared understanding among us storytellers. Perhaps it was in that moment of hesitation following our (the four panelists’) performances, that “[w]e understood in each other the same desperate desire for acceptance.” Perhaps we recognized in one another that we appear to be “haunted by the same fears” (King, 2003, p. 92). I like to think that we (as storytellers) can relate to Thomas King and Louis Owens. King tells us,

[W]e [King and Owens] were both hopeful pessimists. That is, we wrote knowing that none of these stories we told would change the world. But we wrote in the hope that they would. 

We both knew that stories were medicine, that a story told one way could cure, that the same story told another way could injure. (p. 92)

We may feel similarly to Thomas King and Louis Owens, “[t]hat is, we wrote knowing that none of the stories we told would change the world. But we wrote in the hope that they would” (King, 2003, p. 92). And now, with a little distance—with space to process and reflect upon our time at the conference, we may come to recognize, as Thomas King does, “that stories were medicine, that a story told one way could cure, that the same story told another way could injure” (p. 92). I cannot speak for my colleagues, but I find myself leaning into the discomfort felt in sharing my story in a public forum as I choose to believe, as Thomas King does, that our “stories were medicine”—and I hesitate to claim that these stories hold the power to cure or change the world… I will claim that our stories inspire a sense of hope. I “wr[i]te in the hope that they [c]ould” (p. 92).

Patterns

As Tanya Titchkosky recognizes the thematic pattern of trauma that appears in the stories told at the Disability Matters ∞ Ways of Perceiving conference, I am reminded of Okanagan storyteller Jeannette C. Armstrong’s (1998) interpretations of the ways in which our stories form, as explored in her work, Land Speaking,

Through my language I understand I am being spoken to, I’m not the one speaking. The words are coming from many tongues and mouths of Okanagan people and the land around them. I am a listener to the language’s stories, and when my words form I am merely retelling the same stories in different patterns. (p. 181)

I imagine Jeannette Armstrong would likely recognize our narratives as reproductions of our language’s stories. Although our narratives appear to translate our encounters with disability, society, and trauma—I find a sense of comfort in our efforts to work through our traumas. I recognize that we are, in some capacity, “haunted by the same fears.” I recognize within myself the “desperate desire for acceptance” and I now wonder if my colleagues too tell stories of the same calibre (King, 2003, p. 92). 

It is intriguing that all four stories reveal patterns of trouble (allegedly) caused by (willfully) “being in the way” of happiness (Ahmed, 2010, p. 8). All four stories reveal our unwillingness (a refusal) “to play along” (to remain silent) in “oppressive circumstances” (Johnson & McRuer, 2014, p. 136). Perhaps “when [our] words form [we are] merely retelling the same stories in different patterns” (Armstrong, 1998, p. 181) through the language of disability.

What Drives Work 

Therí Pickens grounds my inquiry in what drives work. I wonder about what drives the work produced in disability studies and narrative inquiry. I wonder about what drives us to write these stories, and what drives us to relive and reencounter these moments of our past, present, and future—stories that Tanya Titchkosky notes, appear to translate significant moments of trauma. The “hegemony of normalcy”, as Therí Pickens (2014) explains, “function[s] to exclude the disabled from citizenship, public space, and, in a more mundane and perhaps more painful way, human interaction generally” (p. 21). I argue that the stories we narrate (stories that illustrate moments of social exclusion) are not at all mundane. These stories are hard to hear and difficult to look at in close proximity. The panelists presented works that mirrored a similar sense of discomfort and trouble. I wonder if we all find a similar sense of comfort in translating our lived experiences through academia as a method of (perhaps subconscious) detachment (emotional and the like) that allows us to encounter these moments of trouble and discomfort more easily (F. Cheuk, personal communication, July 21, 2025). Storytelling presents a unique opportunity for wondering about what we might learn from each storyteller and their confrontations with the “hegemony of normalcy” and the moments of exclusion preventing the disabled from acquiring social “citizenship” in “public space, and, in a more mundane and perhaps more painful way, human interaction generally” (Pickens, 2014, p. 21). In this way, storytelling (as it appears in academia) operates as a useful method for reorienting our perceptions (Ahmed, 2006) and reframing the meaning we assign to trouble, discomfort, and disability.

Leaning into Discomfort

Meri Lisa Johnson and Robert McRuer (2014) discuss the potential cost of “challenging subjects who confidently ‘know’ about ‘disability,’” (p. 130) in their article, Cripistemologies. This inquiry leads me to wonder about the consequences of allowing such knowledge to remain unquestioned. 

“Sometimes comfort comes from relaxing into debility instead of frantically scrambling away from it” (Johnson & McRuer, 2014, p. 136). 

I would like to restructure this statement and reorient my perception (Ahmed, 2006) toward questioning how we understand moments of comfort and discomfort as a method of interpretation and meaning making. Our narratives reveal tensions of reclaiming killjoy (Ahmed, 2010)—a “site of productive misalignment with cultural instructions to be (or [to] act) happy [or complacent] in oppressive circumstances” (Johnson & McRuer, 2014, p. 136). To take up the spirit of the crip killjoy is to refuse to “play along” (p. 136) with the “normative expectations” and “assumptions as to what [or who] the individual before us ought to be” (Goffman, 1963, p. 2) and how they ought to act.

How might we utilise a lens of discomfort to interpret the ways we encounter and reencounter stories of disability, society, and trauma—moments deserving of hesitation (Ahmed, 2010; Al-Saji, 2014) and critical reflection? Perhaps what we scramble away from is not debility or disability. The scramble within my story appears in the act of hesitation. I resist the ease with which I lean toward complacency. I embrace the discomfort as a lens for interpretation—driven to make disability matters matter in different ways (Michalko, 2022). These moments grapple with the “‘special’ issues [that] bind such pain and distress to the pleasure of seizing opportunities to” revisit, hesitate, and make meaning of trauma and disability, “together” (Johnson & McRuer, 2014, p. 146). 

The Production of Disability as Trauma

During the Disability Matters conference, an attendee engaged with Tanya Titchkosky’s provocative insight speaking to the thematic connection of trauma apparent throughout the stories presented during the Poeisis of Perception panel. I felt this individual’s comment validating and rings true to my own experience. This individual reasserts their recollection of their experience in the following excerpt as collected through personal communication:

I think there is a tension we can and should embody as disability studies scholars and as disabled people, that must include a materialist perspective. It is traumatizing to exist in a world not made with a thought for your needs, so existing can be traumatic for disabled people. I don’t know of any neurodivergent adults who are not also traumatized by what they have had to face in just existing up to this point. How do we parse out identity from trauma when they are so deeply experientially intertwined? Part of why we are here is to elevate those experiences, resisting the normative act of needing to hide them, amongst people who understand and who can help us to interpret them as a site of theorization about the ways in which disability is a life lived. That life, unfortunately, includes trauma, but we can choose to or subvert it, such that it, too, becomes a site of theorization, and ultimately, liberation. I didn’t grow up even understanding or being able to speak about my disability and I don’t want that for my child. My hope is that, through the work we do together, our children won’t experience the production of disability through trauma, or the production of trauma through disability, the way we have. (With Permission L. Fernandes, personal communication, July 23, 2025)

Perhaps this reflection reveals to myself (and hopefully for others in their own reflections) the ways in which I want to reclaim my story of trauma as one of “refus[al] to play along” with “cultural instructions to be (or [to] act) happy [or complacent] in oppressive circumstances” (Johnson & McRuer, 2014, p. 136). Sara Ahmed (2010) speaks to the power of hesitation and perceptions of “causing trouble” in moments of refusal (p. 4). Ahmed tells us,

Power speaks here in this moment of hesitation. Do you go along with it? What does it mean not to go along with it? To create awkwardness is to be read as being awkward. Maintaining public comfort requires that certain bodies ‘go along with it.’ To refuse to go along with it, to refuse the place in which you are placed, is to be seen as causing trouble, as making others uncomfortable. (p. 4)

This intentional pause creates space to confront the tensions woven throughout our work (together) as students, as academics, as disabled people, as a community coming together to theorize our lived experiences through narrative inquiry, artistic expression, and interpretive disability studies. Ahmed (2010) allows us to recognize the “[p]ower [that] speaks here in this moment of hesitation.” In this way, we might interpret our stories as moments of power—stories that speak to the power of “refus[ing] to go along” with normative expectations by embracing (and causing) “trouble” (Ahmed, 2010, p. 4).  

Naked

I am hesitant to narrate how naked and exposed I felt. I wonder still about the process of acknowledging these moments of trauma (either during the initial writing process or in that precise moment of realization during the conference) as a theme that connects all our stories (i.e., stories that depict our traumatic encounters with disability, with contemporary Western culture, with the “hegemony of normalcy” that “function to exclude the disabled from citizenship, public space, and, in a more mundane and perhaps more painful way, human interaction generally”(Pickens, 2014, p. 21). I believe it is important to acknowledge within myself a sense of shame felt each time I revisit my conference paper. I wonder what to do with this shame. I understand that this instinctual, physiological, emotional, psychological response is shaped by culturally constructed “instructions to be (or [to] act) happy [or complacent] in oppressive circumstances.” I acknowledge within myself the instinct to “frantically scramble away from” (Johnson & McRuer, 2014, p. 136) my encounters with discomfort, pain, trauma, and shame—all of which appear to be wrapped up in barbed wire—like sharp teeth sinking into all the ways in which I understand myself as a disabled person negotiating her way through contemporary Western society, seeking some sort of citizenship (Pickens, 2014) that has much less to do with pain and the mundane, and much more to do with the social act of interpretation (Titchkosky, 2024) in a community of others that might affirm (as Eve Kosofsky Sedgwick affirms) “that indeed she was [we are], as it were, “in the neighborhood.” To find myself “in the neighborhood” (Sedgwick, 2005; as cited in Johnson & McRuer, 2014, p. 130). I interpret the concept of finding myself “in the neighborhood” in the following three ways: (i) geographically: 252 Bloor Street West, twelfth floor of the Ontario Institute for Studies in Education, University of Toronto, (ii) scholastically: international discussions in disability studies, (iii) emotionally: a gathering of individuals seeking ways to interpret, theorize, and create meaningful understandings of disability together. 

In the Neighborhood, Together 

This conference might be interpreted as a metaphor for coming out into the world and entering into the neighborhood to gather with our peers (disabled and nondisabled persons) together to engage in “[t]he back and forth in this mix generated discussion about knowing and unknowing disability, making and unmaking disability epistemologies, and the importance of challenging subjects who confidently ‘know’ about ‘disability,’ as though it [or we] could be a thoroughly comprehended object of knowledge” (Johnson & McRuer, 2014, p. 130). 

Together, in the neighborhood, is how we might begin to untangle ourselves from the barbed wire that held us in place all throughout the short eternity in which we were made to believe that our stories were never meant to be told, never meant to be heard, never meant to be exposed to the world in ways that were anything other than coloured in pain, shame, and trauma. The barbed wire keeps us comfortably captive, “knowingly or unknowingly” (Okri, 1997, p. 46), all the time that we decide to keep our stories to ourselves. Together, I believe, is what makes all the difference. Perhaps the act of gathering together in the neighbourhood (a site for theorization, critical reflection, and hesitation) is an act of resistance in and of itself. Together is how we might begin to make disability matters matter in different ways (Michalko, 2022).

Notes

[1] This abstract excerpt appears on the Eventbrite publication page authored by Tanya Titchkosky (2025). Please note throughout this article I refer to the four panellists (i.e., Matida Daffeh, Jeff Hall, Hilary Pearson, and Miggy Esteban) and their stories presented during the panel, Poeisis of Perception, on May 30^th, 2025. Devon Healey and Bethany Schaufler-Biback were unable to attend the conference. Please see the following reference for further reading: Titchkosky, T. (2025). Disability matters ∞ ways of perceiving: International conversations. Eventbrite. https://www.eventbrite.ca/e/disability-matters-ways-of-perceiving-international-conversations-tickets-1343309668379

[2] The cost is a reference to Jasbir K. Puar’s article, The Cost of Getting Better: Suicide, Sensation, Switchpoints (2011).

[3] Robert McRuer (2014) argues that Sedgwick’s Epistemology of the Closet (1990) is a “useful [text] for locating cripistemology.” McRuer narrates an email correspondence (from the year 2005) with Eve Kosofsky Sedgwick, noting “[h]ow much” Sedgwick’s work “about HIV/AIDS […], breast cancer, and depression” resonates with disability studies. “Sedgwick [2005] warmly affirm[s]” that “indeed she was, as it were, ‘in the neighborhood’” (Johnson & McRuer, 2014, p. 130).

References

Ahmed, S. (2006). Orientations: Toward a queer phenomenology. GLQ: A Journal of Lesbian and Gay Studies, 12(4), 543–574. https://doi.org/10.1215/10642684-2006-002 

——. (2010). Feminist Killjoys (And Other Willful Subjects). The Scholar and Feminist Online, 8(3), 1-8. https://sfonline.barnard.edu/polyphonic/ahmed_01.htm  

Al-Saji, A. (2014). A phenomenology of hesitation: Interrupting racializing habits of seeing. In E. S. Lee (Ed.), Living Alterities: Phenomenology, Embodiment, and Race (pp. 133-172). State University of New York Press. https://doi.org/10.1515/9781438450179-008 

Armstrong, J. C. (1998). Land Speaking. In S. J. Ortiz (Ed.), Speaking for the Generations: Native Writers on Writing (pp. 174–195). University of Arizona Press. https://doi.org/10.2307/j.ctv27jsm69.11

Goffman, E. (1963). Stigma: Notes on the Management of Spoiled Identity. Simon and Schuster.

Johnson, M. L., & McRuer, R. (2014). Cripistemologies: Introduction. Journal of Literary & Cultural Disability Studies 8(2), 127-147. https://muse.jhu.edu/article/548847.

King, T. (2003). The Truth About Stories: A Native Narrative. House of Anansi Press.

Michalko, R. (2022). Foreword. In T. Titchkosky, E. Cagulada, M. DeWelles, & E. Gold (Eds.), DisAppearing: Encounters in Disability Studies (pp. xxv-xxxi). Canadian Scholars Press. 

Okri, B. (1997). A Way of Being Free. Phoenix House. 

Pickens, T. A. (2014). What Drives Work: A Written Performance Piece. Polymath: An Interdisciplinary Journal of Arts & Sciences, 4(1), 19-23.

Puar, J. K. (2011). The Cost of Getting Better: Suicide, Sensation, Switch Points. GLQ: A Journal of Lesbain and Gay Studies, 18(1), 149-158.

Sedgwick, E. K. (1990). Epistemology of the Closet. University of California Press.

Titchkosky, T. (2024). Interpretive methods in disability studies: Dyslexia inflected inquiry. Qualitative Inquiry, 0(0), 1-11. https://doi.org/10.1177/10778004241254394 

——. (2025). Disability matters ∞ ways of perceiving: International conversations. Eventbrite. https://www.eventbrite.ca/e/disability-matters-ways-of-perceiving-international-conversations-tickets-1343309668379