Disability Matters Online Town Hall Circus 2025

This is the first town hall circus event led by the Sheffield team on Zoom on the 19th September 12-1.30pm BST. It asks the question ‘How does centring disability drive innovative change and expand equity, diversity and inclusion in health research?’ 

Event details and registration can be found here. 

Easy read versions of the agenda and script are also available. 

DAN -  INTRODUCTION 

Welcome to the 2025 Online Town Hall Circus of Disability Matters: A major six year pan-national programme of disability, health and science research, funded by a Wellcome Trust Discretionary Award. 

I’m Dan Goodley - the Principle Investigator - and I work in the iHuman research institute at the University of Sheffield. I’m a white, early 50s, cisgendered bald man wearing fabulous clothes, many of them sewn by my own fair hands. My preferred pronouns are he/him. I am a member of the TAB community. A key ambition of Disability Matters is to make disability the driving subject of research. One element of our programme promotes scholarship that demonstrates the contribution of disability studies to a host of fields and disciplines. Over the course of the project we are going to run a number of online town hall events. We are delighted to be joined by two brilliant panellists today and would like to thank them for their work for this event.

CHRISTINA - HOUSEKEEPING & ACCESS

My name is Christina Lee. I am a Research Associate for Knowledge Exchange for Disability Matters. My preferred pronouns are she/her and I am a southeast Asian woman with black hair. As you may have noticed, today’s event is called a town hall circus. This purposeful renaming draws on the collective noun for a group of puffins which is called a gathering or a circus of puffins. It intentionally points to the performative nature of public engagement and knowledge exchange events. In using this play of metaphors, it aims to rewrite the ableist, racist histories associated with the terms ‘town hall’ and ‘circus’ and make space for meaningful, open dialogue where racial minorities and disabled people can feel included and welcomed.

In this event, we ask the question: 

‘How does centring disability drive innovative change and expand equity, diversity and inclusion in health research?’ 

The format of the town hall circus will be as follows:

• First Act (20 minutes): Presentations from the Sheffield team
• Access break (5 minutes) at 12:25
• Second Act (10 minutes) at 12:30: Q&A chaired by Dan
• Transition break (2 minutes) at 12:40
• Third Act (30 minutes) at 12:42: Compass session where we continue our conversation with our panel members in the form of a panel discussion and open plenary
• Close (3 minutes) at 13:12

You are welcome to leave at 13:15 but if you wish, you can stay a bit longer for an Optional rafting session (10 minutes) for aftercare at 13:20 after the 5-minute access break.

Housekeeping and access

• The scripts for today’s presentations are available on our website so you can follow as our speakers present. You can find this link in the chat. [Dan to add link to papers]
• If you wish to access English live captioning, you can turn this on by clicking the Live Caption option in the meeting toolbar below.
• Today’s event will be interpreted by our British Sign Language interpreter Bharti. If you require BSL interpretation, please pin the interpreter to your screen.
• The town hall presentations will be recorded and made available on the disability matters website. BSL interpretation, the Q&A, and the open plenary will not be recorded.
• Please direct questions to the Q&A box in the toolbar at the bottom of the screen. These will then be read out loud later on. If you wish to ask a question using BSL, please message one of the co-hosts.
• A reminder to all speakers and participants to speak at a normal pace and try not to speak too quickly as this affects the accuracy of the BSL interpretation and captioning.
• Please make yourself comfortable in this event. There are breaks throughout the event but if you do need to leave at any time, please feel free to do so.
• You can join in the conversations and connect with other participants at the Padlet networking lounge and discussion board, which are accessible via the link and password in the event reminder email.

To ensure that the event is as enjoyable and inclusive as possible, we ask that everyone follow these Grounding rules of engagement both during this live event and on Padlet:

• We welcome different perspectives and celebrate diversity and would like to keep this a space of compassion and care. Please be kind to one another even when there are disagreements in opinions and beliefs. Ableism, racism, sexism, transphobia, queerphobia, or any kind of abuse will not be tolerated.
• We understand access as a collective responsibility. Please be mindful of other people’s access needs and language abilities.
• Lastly, share space with each other - try not to dominate or interrupt and give other people the chance to contribute.

Welcome to the Disability Matters town hall circus, we hope you enjoy the show.

12.05 - 12.25

Presentations

DAN AND RHEA - REVIEW OF YEARS 1 AND 2 (10 minutes)

Since the launch of Disability Matters in 2023, we have had numerous highlights. These include: 

1. Realising international collaboration

We have established our international research team consisting of four educational institutions. These are the University of Sheffield (UoS) in the UK, the University of Toronto (UofT) Canada, the National Institute of Education based at the Nanyang Technological University (NTU) Singapore, and the University of New South Wales (UNSW) in Australia. 

We are in regular contact with the research team via bi-monthly online team strategy meetings. We have made a number of in-person international visits including meeting colleagues in Delhi (February 2023 and February 2024), Singapore (March 2024 and May 2025) and Toronto (July 2024 and May 2025).

We are partnered with six disabled people’s organisations (DPOs) and these are the National Association of Disabled Staff Networks UK (NADSN), Disability Rights UK, Council of Canadians with Disabilities (CCD), Disabled People’s Association Singapore (DPA), Action for Ability Development and Inclusion India (AADI) and Women with Disabilities Australia (WWDA). We work to ensure the aspirations of Disability Matters align with these key non-academic partners. Their involvement in the programme is formalised via our International Research Advisory Board (IRAB) which meets three times per year. 

We have hosted one meeting of an International Academics Group; world leading disabled researchers who offer intellectual critique of the programme.

2. Successful recruitment 

We have more than doubled our research team since the start of the programme, this is an increase of six team members. 

At the University of Sheffield we have appointed Rhea Halsey (Programme Manager), Christina Lee (Research Associate, Knowledge Exchange) and Ankita Mishra (Research Associate, Health Priorities). 

The University of Toronto have recruited Elaine Cagulada (Research Associate, Representations). 

UNSW have appointed Jodi Lamanna (Research Associate, Methodologies). 

NIE/NTU have appointed Kerri Heng (Research Associate, Research Environments). 

We are working through our continued relationship with Sandeep Singh at Ambedkar University in Delhi, India. 

3.  Inclusive recruitment

Collaborating with colleagues from the WAARC: Wellcome Anti-Ableist Research Cultures project, we are proud to have developed and implemented a model of inclusive recruitment for the research associates and research professional staff at the University of Sheffield, of which has been shared with our university partners and outlined in our writing, of which is available via our website. 
https://www.sheffield.ac.uk/ihuman/waarc/working-paper 

4. An active publications pipeline

We have a number of early outputs that report on our disciplinary, theoretical and philosophical discussions, including two edited books, one sole-authored book and four journal articles: https://www.sheffield.ac.uk/ihuman/disability-matters/publications. 

 

5. A growing Open Access Scholarship Collection

We have curated over 40 provocative scholarly papers through our Online Global Symposia and keynote papers hosted by Sheffield, Toronto, Ambedkar, National Institute of Education/Nanyang Technological University, Singapore, made publicly available on our website:
https://www.sheffield.ac.uk/ihuman/disability-matters/disability-matters-scholarship-collection 

 

6.  Knowledge Exchange

Since 2023, we have run over 10 Online Global Symposia and presented at a range of international events, conferences and seminars. This includes presentations in Greece, Iceland, Finland, Singapore, Canada and the United Kingdom. We have either delivered or featured at over 1000 hours worth of events, which have been attended by 635 people (as of June 2025).

The Sheffield team worked with a disabled film-maker (Tobbell) and Sunderland People First to launch Be Cancer Aware, a film to document the research and innovation expertise of researchers with intellectual disabilities. This is shared via our website:here: https://www.sheffield.ac.uk/ihuman/disability-matters/knowledge-exchange

In the way of programme communications, we have established a digital presence and visual identity via our website and social media platforms (Twitter, Bluesky, Instagram). We conducted a review and refresh of our website (summer 2025) and our social media has seen steady growth since 2023. These are spaces in which we can publish our work and promote any public engagement activities. 

 

7. Additional Wellcome Trust funding

The PI (Goodley) drew directly upon the objectives of the Environments and Development phases of work to help secure a successful Wellcome Institutional Research Culture Funding, at the University of Sheffield, for WAARC: https://www.sheffield.ac.uk/ihuman/waarc. The PI is the Vice-Chancellor, Koen Lamberts.

8. Transforming EDI through disability 

We have started the process of addressing our ambitious plans to transform Equality, Diversity and Inclusion through a proper engagement with disability. The WAARC funding has frontloaded Disability Matters focus on inclusive recruitment and work practices; generating accessible university events and inclusive research methods training; putting disabled people front and centre of research culture inquiry as well as identifying a number of key Institutional Engagement and Key Performance Indicators. More details can be found via our website:
https://www.sheffield.ac.uk/ihuman/disability-matters/transforming-edi-through-disability

9. Researcher development -  Global Leaders in Disability and Health Research Mentoring Programme, with Singh at the centre of these activities:

https://www.sheffield.ac.uk/ihuman/disability-matters/researcher-development

We launched Disability Dialogues, which showcases emerging scholarship and have supported initiatives such as the White Rose Disability Network, a collective of Post-Graduate and early career researchers, activists, and advocates based across the White Rose Universities. We are committed to building a positive and inclusive research culture. 

The Inclusion Leadership Research Interest Group hosted an event on Thursday 19th June 2025, entitled ‘The Depathologising University’. The RIG’s Co-Convenors, Dr Beth Holmes, Dr Wendy Conrad and Dr Donnie Adams, were joined by guest speaker, Professor Dan Goodley, Professor of Disability Studies and Education in the University of Sheffield’s School of Education, who discussed his work in the field of Critical Disability Studies, and the ways in which academics, researchers and research professional colleagues are depathologising the disablist and ableist university. Dan's talk is accessible online. 

We will be delivering an International Exchange experience which will facilitate collaboration across universities. We will also be running and supporting a number of Spring, Summer, Autumn and Winter Institutes which will bring together doctoral researchers and early career researchers to showcase their work. So far, this has included the Spring Institute in Toronto, Canada in May 2025.  

ANKITA - PHASE 2 HEALTH PRIORITIES (5 minutes)

Good [morning/afternoon/evening] everyone.

My name is Ankita, and I am the Research Associate leading Phase 2 of our programme, Disability Matters, which focuses on health priorities of disabled people in five countries: Australia, Canada, India, Singapore, and the UK.

The central question guiding this phase is:
What are the health priorities of disabled people across these diverse contexts?

But as we ask this question, we are also asking:

Who gets to decide what counts as a “priority”? Whose voices shape our understanding of health? And how can we centre the lived experiences and wisdom of disabled people themselves—particularly those from the Global Majority?

These questions are not only about inclusion. They are about power. They are about who gets to produce knowledge, who shapes policy, and whose lives are considered in definitions of health and wellbeing.

As a racially minoritised, migrant, disabled woman based in a geopolitical northern institution, I witness the colonial legacies that persist in the ways we talk about and study disability: white western, euro-american frameworks continue to dominate. And in doing so, they erase the knowledge, practices, and lived experiences of disabled people from the Global Majority—from Indigenous, rural, poor, queer, and culturally diverse communities.

This ongoing epistemicide—the erasure of ways of knowing—is not just an academic issue. It has real consequences in policy, care systems, and health access.

And it is this that Disability Matters seeks to confront head-on.

Phase 2 offers us an opportunity to do research with, not on, disabled people. To shift the research gaze away from extraction and toward solidarity, collaboration, and shared ownership.

We are reorienting the margins in this Phase. 

We begin by turning intentionally to India—not as a case study, but as leading and shaping our understanding and approach. By centring the insights of disabled people across the diversity of India, we intend to reframe our conversations about what “health” really means. 

We are partnering with Disabled People’s Organisations (DPOs) in both Delhi and Bhubaneswar, namely, AADI and Swabhiman so that we can include voices reflecting the many Indias from urban, rural, and tribal contexts. These partnerships are long-term, reciprocal relationships built on mutual trust and accountability. Together, we are co-creating methods that honour local knowledge systems and relational ways of knowing.

Let me share how we are doing this.

First: Criptopia Workshops

Here, we begin from the future.
We ask: What are your dreams and hopes for health and care?
What would a just, joyful, inclusive future for health look like—if it were shaped by disabled people themselves?

Criptopia workshops invite disabled people to share their hopes, aspirations, and radical reimaginings of what health could be—not just in the future, but in the now.
This is significant for us because disabled people are so often erased from futurist thinking—seen as a problem to solve, rather than as people with dreams, aspirations and wisdom. Through this, we intend to create nurturant spaces for building trust and relationships.

Second: Community Story Circles

These are multimodal, creative spaces where disabled people reflect on what health and wellbeing mean to them—on their own terms.
Participants may tell stories through art, audio, video, poetry, or even silence.
We embrace fluid, nonlinear and embodied storytelling. This method is not only about gathering stories. It’s about honouring emotional and intuitive knowledge and making space for voices long excluded from academic and policy discussions. These stories challenge universalised assumptions and make visible the richness of lived experience.

Third: Policy Mapping Workshops

We ask: How are policies actually lived?

These workshops use a “lived policy” framework that centres disabled people’s real experiences of navigating health systems, services, and legislation.
We collaboratively critique existing policies, identify what’s missing, and co-create imaginative alternatives grounded in lived experience by speaking back at the policy processes and actors through a dialogical approach.

Across all three of these methods, our research is grounded in a Participatory Action Research (PAR) approach. PAR means that disabled people are co-researchers, not subjects. It means that they shape the questions, the methods, the analysis, and the outcomes. We are, thus, practicing a model of research that is collaborative, creative, and decolonial. We honour spiritual, cultural, and communal forms of knowing. We value care, connection, and reciprocity.

We also remain committed to long-term, ethical partnerships with Disabled People’s Organisations across all five countries to help us focus on local priorities, and we are building in time and space for co-design, co-analysis, and co-dissemination. We are co-designing ethics processes. We are building a Research Advisory Group made up of disabled people themselves. We are committed to paying people fairly, respecting local contexts, and being honest about our limits. This work also challenges conventional timelines and outputs.

We are asking for health priorities that reflect disabled people’s realities, knowledge, and dreams—not just data points or categories. Our goal is not just to surface stories—but to translate them into actionable insights that are co-created.

As we move forward in this phase of the programme, our commitment to work with our disabled communities strengthens to ensure that disabled people are actively involved in shaping the direction, substance, and impact of the work. We see this as an opportunity to foster shared learning, equitable partnerships, and meaningful, long-term engagement that values local knowledge, cultural context, and collective expertise in pan-national contexts.

Together, we can help ensure that the priorities, perspectives, and hopes of disabled people are reflected in the systems, structures, and futures we help build.

We hope this work opens space for ongoing dialogue, reflection, and shared action—rooted in care, collaboration, and mutual respect.

So as we begin and continue this work, I invite you to consider: What would it look like for each of us to help build a world where disabled people’s knowledge and experiences truly shape the health futures we are collectively imagining, not just through consultation or representation but by ensuring a genuine shift in power?

Thank you.

CHRISTINA - PHASE 7 KNOWLEDGE EXCHANGE (5 minutes)

In my role as the Research Associate for Knowledge Exchange for Disability Matters, I am leading on Phase 7 of the programme, which explores ‘What transformative knowledge pertaining to equity, diversity and inclusion (EDI) can be generated through a focus on anti-ableist and anti-disablist practice’. 

At a time when efforts to promote equity, diversity, and inclusion are being undermined and when disabled people’s very lives are under threat, centring disability and disabled knowledge is a matter of urgency.

Too often, disability is treated as an object of research. Knowledge about disability is inaccessible to many disabled people who neither have access to the spaces in which knowledge exchange takes place nor the resources to make sense of that knowledge. Knowledge exchange as it is done in academia does not reflect the diverse access needs, cultural perspectives, and ways of knowing that shape disabled people’s experiences.  This exclusion of disabled people from research that impacts their lives actively harms and disempowers disabled communities.

At Disability Matters, we take the view that the problem is not disability or the disabled person but in the systems and structures that create inequity and inaccessibility. In this phase of the programme, we aim to disrupt and transform these structures by doing knowledge exchange differently.

This work is informed by three guiding principles.

Firstly, that transformative knowledge exchange starts with humility and gratitude.

We recognise that as researchers at a global North institution, we are complicit in the system that does harm and that our experiences of disability are limited and not representative of the global majority.

For disabled people, sharing knowledge is an act of generosity and community building. Disabled people’s living knowledge of disability cannot be separated from the people, stories and relationships from which they emerge. Knowledge is generated through sharing space and time with each other.

We cannot undo ableist structures in research without leaning on and learning from disabled elders and leaders. So we extend our gratitude to all the disabled people organisations, disabled colleagues, friends, allies who support this work, and also to all of you, for sharing this space with us today.

Secondly, we recognise that engaging in transformative knowledge exchange means holding space for the joys, pains, and challenges we experience as a community.

In renaming the online town hall as a circus of puffins, we wanted to reimagine knowledge exchange as an encounter that evokes wonder and community and play. 

After the Q&A, we will have a compass session with a panel discussion and open plenary. As a noun, a compass can refer to an instrument for navigation. As a verb, to compass can mean to go round in a circle or to plot and contrive. So this compass session is not only a space where we share and move through each other’s aspirations and frustrations, but also where we co-conspire to redirect research towards a more inclusive future.

Thirdly, we understand that transformative knowledge exchange involves taking up failing as a practice of care.

While we strive to be as accessible as possible in our work, we also understand that improving access is an iterative process that takes time and many failings.

This online town hall event is part of our ongoing experiment in failure. 

At the end of the circus, we will hold an optional rafting session for aftercare and reflections.

Rafting unfortunately comes from another seabird and sailing metaphor. Rafting in boating is when two or more stationary boats are tied together. Rafting in seabirds is when puffins sit in groups on the waters close to the shores of the colony.  Rafting can be about socialising, resting, or finding refuge in each other’s company. Similarly, we hold this rafting session as an informal space for anchoring and reflecting on the emotions and frictions that were generated from this gathering. 

Finally, I close with a question:

How have you been transformed by knowledge exchange and how has it influenced your research and engagement with EDI?

12.25 - 12.30

Access break (5 minutes)

We will now have a 5 minute access break and resume at 12:30 where we will have time to answer any questions you may have for our team about the programme and respond to the provocations.

Second Act

12.30 - 12.40

Q&A (10 minutes) - Moderated by Dan

Welcome back to the Second Act of the town hall circus. We will now invite questions and responses to the provocations earlier.

You can submit questions via the Q&A function on the toolbar or you can use the Raise Hand function. If you wish to ask a question using BSL, please message a facilitator and we will let the interpreter know.

12.40 - 12.42

Transition break (2 minutes)

We will now have a quick 2-minute transition break for our panellists to get ready for the next session and come back at 12.42.

Third Act: Compass session

12.42 - 12.57

Panel discussion (15 minutes) - Moderated by Jacquie Nicholson

Panellist bios:

Dr Katherine Deane is Associate Professor in the School of Health Sciences at the University of East Anglia (UEA) in Norwich and is also a wheelchair user with a variety of long-term conditions. She conducts research on the co-created management of long-term conditions and disabilities. She is also the University’s Access Ambassador and has improved the accessibility of their campus substantially in the last 10 years. She has provided access advice to a wide variety of institutions, funders, manufacturers, and event organisers. She conducted a survey of lab access in 2023 and created a suite of lab access guidelines. She is currently working on 7 funded research projects worth £9.5 million focussed on applying and evidencing best practice EDI in research.

Professor Kate Sang is a Professor of Gender and Employment Studies at Heriot-Watt University, and the director for the Centre for the Transformation of Work – an interdisciplinary research centre.  She specialises in research which aims to improve marginalised people’s careers, with a particular interest in women and disabled people’s careers. Kate’s research is underpinned by an intersectional approach, recognising that our experiences of employment are informed by intersecting structural and cultural inequalities. Further, Kate has expertise in participatory action research, working with research end-users to create workplace interventions which reflect the needs and experiences of organizational stakeholders, including employees, trade unions, employers and policy makers.

More recently, Kate’s research has explored gynaecological health at work, disability inclusive science careers and migrants’ experiences of employment. Kate is interested in the role of technology, including virtual reality, in fostering more inclusive workplaces. Kate is also pursuing research which works to embed the needs of women and disabled people in environmental measures.

Prompt questions:

1. How have you engaged with intersectionality in your work on disability in EDI spaces?
2. What can funders, organisations, and employers do to support the sustainable, meaningful inclusion of disabled people in health research? (not just researchers but also technical support staff incl. IT and labs, professional services etc)

12.57 - 13.12

Open plenary (15 minutes) - Moderated by Jacquie Nicholson

We will now open the floor to the audience.
Picking up on questions in the chat and/or people raising their hand

13.12 - 13.15

Close

CHRISTINA - CLOSE

Thank you to our panellists for sharing your work and thoughts with us. Thank you to Jacquie for her brilliant chairing and to Bharti for her interpretation.

Thank you also to all of you for taking the time to join us today. We hope you enjoyed today's town hall circus. Please let us know how you found the event in the short survey link shared in the chat. You can continue the conversation on the Padlet discussion board, which will remain live for a week after the live event. You can also send us your comments via email or on Bluesky using @dismatters.bsky.social‬. 

If you wish, you can stay behind for the aftercare Rafting session, after the 5-minute break, where you can feed back to the organisers, speak to the panellists, or just hang out.

We will be running more events soon so please keep an eye out on our website and social media channels for updates.

We hope you enjoyed the show and we look forward to seeing you again soon.