Representations

Leads: Elaine Cagulada and Tanya Titchkosky (University of Toronto) and Dan Goodley (University of Sheffield)

Doing disability differently (University of Toronto)

The Doing Disability Differently (DDD) research, reading and activist group based at OISE, University of Toronto are working with the question of representing disability in health and medical contexts. As Tanya Titchkosky (2025) writes:

Since 2006, I had been convening the Doing Disability Differently (DDD) research, reading, and activist group. At various times, this group included disability studies faculty, graduate students, post-docs, staff, sometimes undergrad students and sometimes faculty on leave from other universities. Together we’ve been doing research and access activism at OISE, the University of Toronto campus, and beyond for nearly two decades. We have hosted international speakers, reading groups, we’ve done access audits of OISE space, advocated for more accessible washrooms and subway entrances as well as formulated safety and emergency plans. At least two edited DS collections are connected to the DDD (Rethinking Normalcy and  DisAppearing: Encounters in DS ). We have also hosted colloquiums, seminars, a DS Summer Institute as well as a Critical Influencers conference and   intra-university sessions such as “What’s Up with DS in Toronto,” and “Outa Sight.” At bottom, the DDD events generate discussions that nurture the assumption that disability is not an individual problem but, rather, a collective interest that matters through all our relations.  

DDD promotes a unique model of relational scholarship and community building that brings together scholars, graduate students and activists. In relation to the Disability Matters programme, DDD asks:

• How does disability matter to education, including health and medical education?
• How might disability studies and mad studies reorient people, practices, and policy within the cultural matrix of education, health, and medicine? 

The DDD community brings a scholarly approach to the study of representations of disability - and ways of perceiving - that raise not only queries about our relationship with disability but also critiques the very idea of disability studies and the study of disability. Recent activities undertaken so far include:

Disability Matters ∞ Ways of Perceiving International Conversations (May 2025)
This Spring Institute promoted International Conversations about disability perceptions in and outside of medicine hosted by OISE, University of Toronto, Canada. See this link for a programme of the event You can also read contributions by some of the participants as they reflect on our time together. As Tanya Titchkosky writes ‘In attempting to recognize what might lie between disability matters and ways of perceiving, we landed on the infinity sign - ∞ - the sign for the on-going relations between our disability studies research work, and the need to consider the place of disability experience in our lives’.

Questions of disability studies: Writing retreat (June 2025)
What is disability studies for? What does it mean to do disability studies? What is disability studies and what is disability studies doing? What does it mean that, today, disability and disability studies can be, at least partially, incorporated into the university, even though the university conceptualizes disability in non-socio-political ways enabling primarily the study of disability as a bio-problem and its management as such? Once adopted by the university, how does disability and disability studies influence or change the ways traditional research is done or how students, faculty and staff are managed? Sylvia Wynter, decades ago, wrote to her colleagues about the place and meaning of b/Black Studies in the University in the face of the violent beating of Rodney King and the further injustices meted out following this beating. She asked her colleagues to be more concerned about what they had done to train the “inner eye” so that the “best and brightest” were enabled to perceive certain people and their lives as no life at all. When watching the expanse of relations that can encircle some lives as NHI – No Humans Involved – Wynter realized it was the whole of academia, including those interested in justice, and “our studies,” that she had to address – and not just the more obvious culprits – police, judiciary, and the media. The question of what “we” have done, we who educate the inner eyes informing how people perceive, know, manage, organize, rehabilitate, confine, and punish or support other people – this question should remain important given the appearance of NHI-perception in daily life, including our lives as disability studies scholars. NHI-perception, that is the capacity to perceive human life through acts of objectification, could be understood as one of academia’s primary activities. This writing retreat provided space and time - oriented to Wynter’s work - to address a key question of the Disability Matters programme: what is disability studies for?  Retreat discussions were also informed by two work in progress papers:

Chen, K.L., Titchkosky, T., Pope, W., Miller, D. and Gao, Q.L. (in press). The Social Production of Disability in Encounters with Ontario's Right to Read Inquiry: Beyond the Models of Disability. Canadian Journal of Disability Studies.

Titchkosky, T. (forthcoming). Submitted: Fascism taking Flight on a Disability Runway: Analyzing Trump’s Disability Degradation in Turbulent Times. Disability in Turbulent Times (Edward Elgar Publishing). Edited by Patty Douglas, Harriet Cameron and Katherine Rusnwick-Cole.

Cagulada, E. (2025). Breathing Speaks of God: Exploring a Moment's Unfolding Through Interpretive Disability Studies” (Canadian Theological Society ... https://cts-stc.ca/2025/05/21/cts-2025-final-schedule/ ). 

Launch and celebration of Special Issue, Disability Studies Quarterly, Mad Methods, Methods of Madness, OISE, University of Toronto, January 2026
Dr. Efrat Gold is the co-editor of a special issue of DSQ – Disability Studies Quarterly – Mad Methods, with Dr. Michael Rembis (Director, Center for Disability Studies, University at Buffalo,  SUNY).  Efrat and Mike had a launch/celebration in the Nexus Lounge at OISE University of Toronto on Jan 16^th . Along with some of the authors from the special issues talking about their contributions, there was knowledge sharing amongst those doing research and/or archiving community endeavors and various mad and anti-psychiatry activism updates, including a call for participants for a comedic film documentary about coming off psychiatric drugs .  The 50 in-person and 15 on-line audience, also got a short captivating introduction to Mike Rembis’ new book with Oxford university Press Writing-mad-lives-in-the-age-of-the-asylum .  It was a very calm yet highly stimulating and friendly event.

Disability Matters: A new Graduate course (2025 - 2028), OISE, University of Toronto
How does disability matter to education, including health and medical education? How might  disability studies and mad studies reorient people, practices, and policy within the cultural matrix of education, health, and medicine? This graduate course demonstrates how interpretive approaches in disability studies and mad studies might turn us toward a reconsideration of our entanglement with health and medical matters. Seminar discussions will focus on grappling with how disability matters not only to questions of humanness, but to questions of health and life itself. The course will be open to graduate students from across the arts, humanities, social and medical sciences (in 2028). The following phases of work are informing this work:

Poetic representations of disability: colleagues in the University of Toronto are committed to embracing different forms of writing and performance to capture relationships with disability and healthcare. One example includes Dr Elaine Cagulada's recent poetry reading NEDA: Words for my Darling

Disability and Race in the campus classroom: interpretive possibilities (Cagulada and Titchkosky, forthcoming, Open Access Book, Palgrave) argues that re-encounter[ing] representations as a way to commit to a politics of openness. Such a politics, Cagulada and Titchkosky suggest, requires a pause in the face of certain dichotomies (such as the assumed dichotomy between medicine’s interests and disabled people’s interests) as a way to pursue a “re-description” and show how we might better nurture engagement with our inter-relatedness.

Doctor Interviews. Making use of a cultural studies informed version of disability studies, this study explores the interpretive milieu reflected in medicalized understandings of disability in order to begin analyzing how disability is represented in health practice, research, and teaching. Through interviews with medical doctors and clinical practitioners - who are also medical educators - the research pursues the following objectives: 
(1) examine how disability is currently appearing in the health context; 
(2) show how routine medical practice, research and teaching have something to reveal about how the meaning of disability is produced within medical settings. 
In particular, how do established researcher/physicians experience and related to disability in their medical practice, research and teaching? Given the detailed knowledge that doctors have of particular disabilities as their speciality and their practice of interacting with actual people who live the disability experience there is a unique opportunity to explore the complex and nuanced way that disability has and is given meaning within a medical context.The main question of that guide these short open-ended questions with doctors include:

• how does disability come up for you in your practice?
• how do you address disability, or tell people about becoming disabled, or otherwise use the term in your daily practice?
   

Disability Studies Advisory Group - an ad hoc advisory group that brought together disabled/mad activists, researchers, scholars and teachers in July 2025 to assist in the exploration of disability matters as they relate to current research and the development of a new course. Participants have experiences of nurturing complex relationships to medical practices, psychiatric practices, disabled/mad experiences, disabled/mad community, and/or critical academic study in their lives and/or work.



 

Reclaiming disability representation in healthcare research and dissemination (University of Sheffield)

We will also explore how disability is depicted in healthcare research and dissemination. From May 2026, Dan Goodley and colleagues at the University of Sheffield will lead a phase of work that implements a Critical Ethnography and Critical Discourse Analysis of past/present online/offline public engagement events (including seminars, exhibitions, symposia, workshops, debates, panels) held by Wellcome and other inter/national funders over the last decade. We will assess discourses and narratives of disability represented in their messaging and ask:

• How is disability depicted in events held by inter/national funders?
• In what ways is disability used as a prosthetic to create problematic conceptions of disability in the service of health research messaging?
• How might we draw on the work of critical disability studies to reclaim alternative representations of disability in healthcare research and dissemination that emphasise possibility over deficiency?

This analytical work will also be supplemented by a number of Key Stakeholder interviews with disabled artists, designers and influencers will offer expert-by-experience critiques of representations of disability and health. We will work with these stakeholders to ask:

• In what ways are different media providing opportunities for a reconveyance of disability representations in health contexts?
• What possibilities and dangers are found in these media representations of disability?

An Online Guidance Document for health research funders will draw on findings of this phase and outline recommendations for the use of disability metaphors and imagery in healthcare dissemination/public engagement. 

We will also work with a disabled filmmaker to produce two Representing Disability Documentaries (the first on dominant discourses and the second on alternatives). Filmmaking is an effective tool for reimagining contemporary representations. We will report on findings/recommendations through at least four Journal articles
 

NEDA: Words for my Darling
A Poetry Reading from Elaine Cagulada
Feb 4^th, Tranzac Club, Toronto
A recounting by Tanya Titchkosky, SJE OISE of the University of Toronto.
Feb 8, 2026

Elaine, Queenie, Dr. C – these are the three names with which Rod Michalko introduced Elaine Cagulada* with yet another name, equally legitimate – Poet – to the room at the Tranzac Club in Toronto on Feb 4, 2026.  Elaine was joined by friends, family, activists, artists, sport writers, medical professionals, students, and mentors, disabled and non-disabled people, more than 40 combinations thereof, for an evening billed as a “journey into the ineffability of grief.” People traveled on this especially cold winter evening from all over Toronto including Scarborough, and from other cities, Oakville, Pickering, Bowmanville. The poetry reading based on Elaine's book-in-progress, “Neda,” honours her late mother, Zenaida. The packed room, Elaine’s warmth, and perhaps her engagement with “loops of love and loss,” as she put it within which we are all caught, kept me attentive, stilled, and even needy for this offering of artistry as a reckoning with what can unmake us. 

Elaine’s grief-journey entailed a moving account, ranging gracefully and sometimes raucously, between the tragedy and comedy of grief tied to the loss of her mom to a dramatic medical crisis. The poetry was profound in its artistry with surprising phrases (pots as hats, hats as drums, letters as noodles), and in its commitment to never stop struggling to create in those losses, making something unexpected of the Poet. 

This collection of poems, performed on the risky edge of feeling what one means to say, needs to become a book since any straightforward prose recounting (such as mine) cannot do justice to how Elaine depicted the transformation of her childhood babysitter into her mom, and then her mom’s transformation into suffering incarnate, coming under intensive medical care, and then passing on. Neda, the book to come, will eternalize the tormented beauty of Elaine’s poetry. In the room that night we were generously gifted, along with short interstitial accounts filled with laughter and tears, a sense of the life that generated Elaine’s poetic creations. 

But Neda, the book, does not yet exist. So, for now, I will recount tiny bits of Elaine’s verse that left me wishing to move more permanently into her words and try to face what love and loss might mean as they come together. 

…

Elaine begins by suggesting that her poetry arises from 

Behind time’s curtain. 

Peaking around this curtain, Elaine hints at one of the questions animating her account:

How do we let our suffering breathe? 

This question nurtures Elaine’s willingness to go on and wrestle with 

the loops of love and loss.

In her struggle, Elaine follows M. NourbeSe Philip’s sense of poetry as language under pressure. But what sort of pressure did Elaine bring to bear upon the language of her loss and her love? A response can be found in her pearl-hard understanding that loss, love and perhaps life itself is…

an expanse that has no name

[and yet]

Nurses imagination 

[An aside: At this point, the growing hush of the room showed our collective captivation with Elaine’s modulated voice calling us to listen to words uniquely articulated through a gravitas touched by joy. It is that strained joy that comes when realizing that people can carry a sorrow so full of loss into words that matter both to their self and to that of others. Imagination was nursed, mine, perhaps, too well. Elaine’s poetry rendered some expanse yet to be understood and I heard a door, that I could not see, open and close, followed by the sound of footsteps on stairs that I also could not see. And in this disconcerting set of sounds, I heard a need to keep listening to the spirit that transcends a sense of individual loss. Sorrow’s universe opened a little more.]

And what remains, when poetry peaks from behind time’s curtain where suffering breathes?

All that’s left is a miracle of a bond.

This bond is like the sun of the Philippines where Neda and Elaine’s father were born

That sun hits less of a veil.

Connections, bonds, abound, revealing some of the meaning of one to another. 

Soon, though, the story moves.  With the death of her first mom, Elaine’s Father moves with child Elaine and her older brother to other countries, eventually to Canada, Edmonton. In the midst of many babysitters, she meets her “final babysitter” in her magic castle full of candy, games, purses, pots and pans on the kitchen floor, drums. This final babysitter becomes her mom. 

This is Neda.  

“What?” 

says her mom, as Elaine sought out all her mom’s loving attention served with caring, cooking,  eating, cleaning.  And, of her mom’s “What?” Elaine finds:

Frustration dressed in a word

Yet, her mom’s presence filled with laughter, enjoying Elaine’s need to need her so, dancing through discoveries of past and present family relations…

Till Joy itself is exhausted.

It is through this story of a babysitter who becomes a mom, of a family remade, of a growing care bigger than joy itself, that comes up against the fall that is illness, fully felt, where we glimpse Neda’s eventual passing-on as a harsh, harsh turn. 

And, with this turn, I can’t justly recount the moving artistry of Elaine’s poetic depiction of crisis, illness, and loss.  We all need Neda if we are to grasp this storied life caught in the devastation of  bodies failing and what that might mean:

Maybe its better she doesn’t [we don’t] know how bad it was

For the courageous poet, though

Loss has gained my every attention...

An attention which, now and again, makes the poet wear her 

braids like condolences. 

Such loss changes the daughter who grows toward an unexpected hope to not return as the person she was before. After all, her mom won’t

Come back, be with what’s yours.

…

Between the birth of this mother-daughter relation and Neda’s passing on, lies some of the most powerful hospital writing I have ever experienced. I took no notes during this part. I couldn’t. 

The sense of being held within the medical purview as it works on but, also, works past the significance of the failing human body, whose capacities disintegrate and bleed out in the aftermath of stroke, is powerfully rendered in the poems that proceed Neda’s burial. The tragedy, graced by Elaine’s solemn poetic, was also laced by an ironic sense of how hospitals and funeral homes continue the same as ever in their alienation from our collective loops of love and loss. Neda is a poetic encounter that demonstrates the “cruel radiance” of poetry as Rod Michalko’s introduction put it, a radiance that, in this case, emanates from the experience of being unmade by grief. 

Elaine Cagulada’s performance of Neda risked the disintegration that comes with full engagement with a consciousness of the universe of sorrow. And, yet she offered the listener a call back to composure through laughter as well as through her depiction of suffering love. In this reflective gaze we, too, might now believe that wecan remake what has unmade us. 

With Neda we experience the powerful and brave possibility of the poetic – and whatever else happens, there is a care-filled creativity in the midst of rupture. In our times, touched as they are by tyranny, and in life being such a companion to death, Neda ultimately invites us to consider what ruptures provoke our creations and how we can better care for what unmakes us. 

*Dr. Elaine Cagulada, University of Toronto, Social Justice Education Alumna and Research Officer for Disability Matters and co-editor of