Blog

What does Cripping Breath mean to us? Meet the team (Blog post #1, Jan 2025)

By Dr Julie Ellis and the Cripping Breath team

It’s the start of year 2 for Cripping Breath and it’s hard to sum up just how excited we are about this project!  Yet, this is exactly the task we set ourselves for our first project blog post. As an introduction to the team and some of the work we’ll be doing, we want to share with you what our different affinities with the research are and allow ourselves a moment to think about what it means to us to be doing this work. And so, hello! Here are our reflections in a special extended blog post to kick off our blogging series. We are looking forward to posting updates about the project with you - please give us a follow and spread the word!

Louise Atkinson, Artist in Residence

Cripping Breath has provided me with a wonderful opportunity to combine my experiences as an artist, researcher, and community facilitator. As a visual artist, I’m used to working on my own to produce artwork, so being part of a bigger team is a new experience and it’s rewarding to see how my work connects with, and adds to, the wider project. In year 1 I’ve been exploring the topic of mechanical ventilation in depth, researching its histories and collecting archival images. This has allowed me the space to experiment with new ideas, and the collaborative environment keeps opening up different possibilities for creativity and understanding. I’m excited about working with the new Artist Collaborators in the Autumn.

Julie Ellis, Research Associate (ethnographic work)

I joined Cripping Breath at a time when I needed to reconnect with what gives me joy in my work. I was seeking a space to experience things I value in research, but which in fast-paced, output-focussed academic environments can sometimes get neglected. Things which shouldn’t seem radical, but which often are – intimacy, humility, vulnerability, rest, reflection - in Cripping Breath these are all an integral part of the research process. When I joined the team, I discovered ‘Crip Time’ (which amongst other things means enacting 'slow scholarship') and it has been like finding the missing jigsaw piece to a very frustrating puzzle! It’s so liberating to be an ethnographer embracing slow scholarship, because ethnography is all about having time to become immersed in the issue you are exploring.      

Barry Gibson, Co-investigator

Having spent over 30 years working almost entirely in the field of oral health as a sociologist, I was so pleased to be invited to contribute to Cripping Breath. It’s exciting to be able to use my understanding of clinical research, sociology, and ethnography here. The project resonates with me because at its heart is a radical inclusivity that is both challenging and exciting. The project's transdisciplinary approach, with its active collaboration with community partners and clinical settings alongside historiography, is truly unique. I am particularly drawn to the study's commitment to centring the lived experiences of people with disabilities. I think it has the potential to generate groundbreaking insights about ventilated lives and can act as a catalyst for change in clinical pathways.

Suzanne Glover, Lead Community Researcher

As someone who has used non-invasive ventilation (NIV) for 20 years, the experience has been both life-changing and sustaining. However, I only need to use it at home - behind closed doors and curtains – and so when it does slip into conversation with unexpecting people, I notice their eyes go wide in shock and there is often a sense of pity in the air. Only a few people - my care team, family and some medical professionals – get to see my instant relaxation and the blissful synchronisation that occurs as my NIV machine ‘takes a load’ off my breathing after a long day of talking in meetings, dictating emails, laughing and generally just staying alive. I want to change perceptions of what it means to live on and with NIV. Too often, it’s thought of as something medicalised (cue shocked faces) and which signifies the end of life (and now the pitiful looks). Cripping Breath is a platform for individuals with lived experience of ventilation (our community researchers) to shake up these ideas and to make space for new meanings.  

Jamie Hale, Artist in Residence

From the outset, what excited me most about Cripping Breath was that it understands ventilated individuals to be the primary producers of knowledge about their experiences of ventilation. While much co-produced work focuses on ‘producing with’, my role in this project feels distinct because it's about ‘producing from’ – I’ll be drawing directly on my own experience as a ventilation user to inform our work. We will be (re)staging a classic text through the lens of ventilated living and broader experiences of disabled life. Importantly, Cripping Breath is a space for me and my prospective co-researchers—who will be both ventilated individuals and paid expert collaborators—to recognise our lived experiences as valued and vital sources of cultural and creative knowledge, in spaces where personal experience is often undervalued.

Grace Joseph, Research Associate (arts-informed work)

After some years working in theatre and as an access worker, and following a PhD on aesthetic access, I’m really happy to have joined a project that connects up these different aspects of my career. My work on Cripping Breath is both academic and creative and moves between hands-on and conceptual modes. I’m currently collaborating closely with Kirsty, Jamie, and Louise, and will soon be working with six Artist and Performance Collaborators. Over the next few years, we’ll co-produce live theatre performance and contemporary art for exhibition. We’re also thinking together about access—in aesthetic terms, and in important ethical and political ways, too. So, for me, the project represents an opportunity to continue working in performance, to learn more about contemporary art practices, and to think carefully about disabled people’s experiences: in daily life, in academia, as artists, and as audience members.

Jen Kettle, Research Associate (narrative work)

I’m interested in people’s everyday stories of their health-related experiences, and how their stories are situated in the context of their individual biographies, personal relationships with others, and understandings of society and culture more generally. It’s fascinating to explore how dominant ideas and public narratives can be reflected, but also challenged, in these personal accounts. Listening to and sharing people’s stories, especially those that are often unrecognised or suppressed, is valuable, and encourages those of us who do not share the same lived experience to reflect on and challenge our taken-for-granted ways of thinking. For me, Cripping Breath offers an exciting opportunity to explore everyday stories of respiratory health and ventilation and to develop an understanding of how people tell these stories and the narrative resources they draw on, working alongside community researchers with lived experience.

Rod Lawson, Clinical Co-investigator

As a doctor, I've been involved in my fair share of research to do with breathing and illness. Usually in planning research, doctors and other professionals ask a patient representative to comment on the research they would like to do, asking things like, is it practical? Will it be acceptable to patients? However, whilst often research might acknowledge the input of patient representatives, it remains driven by professionals, to the agenda they decide. The exciting thing about the Cripping Breath is that it reverses this process. The agenda is driven by people and their experiences. As a doctor I aim to try to facilitate this process, but I feel that ownership of the research remains with those experiencing breathlessness and lung disease, and it should centre their perspectives. I see this as an exciting opportunity to gain new insights and understanding.

Kirsty Liddiard, Principal Investigator

As the project lead, what has excited me most about Cripping Breath over its first year (2024), has been seeing it go from ideas on a page in a bid for funding to the Wellcome Trust to a fully-fledged team of brilliant and creative people committed to our project plans. The project has effectively come to life over the past year, and as someone rooted in its original design, alongside a host of others, this is incredible to see. I’m also excited for what’s to come over the next 4 years: (i) the commencement of our Community Researcher Cooperative (we recruited 13 researchers with lived experience of respiratory illness and ventilation) led by Jen and Suzanne; (ii) our upcoming arts residencies for disabled and chronically ill artists who will work across visual arts and theatre contexts, led by Grace, Louise and Jamie; and (iii) our imminent ethnographic explorations of Sheffield Teaching Hospital’s respiratory health services led by Julie, supported by Kate, Barry and Rod; and so much more! I’m also thrilled about our Museum of Breathing - created by the dynamism of Louise - which is making our archival work accessible to all kinds of audiences. On a personal level, something I’m most proud of is turning possibly one of the most traumatic experiences of my adult life - beginning to use and learning to live with ventilation as a lifelong intervention in my life - into a truly transformative, interdisciplinary and co-produced piece of inquiry. 

Kate Weiner, Co-investigator

Kirsty invited me to be part of Cripping Breath because of my interest in researching everyday health practices and health technologies. In my work I explore how technologies come to escape the clinic, potentially as part of consumer markets, to be used and accommodated in people’s homes, and the questions this raises about health care provision, clinical responsibilities, care and implications for how people experience home. Here there are clear connections with Cripping Breath, thinking about how ventilatory technologies are used outside of clinics and in everyday settings such as people’s homes. This research is also a fantastic development opportunity for me. I’m really excited about learning new ways of working within academia as I’m new to critical disability studies and co-production. I’m also looking forward to some really interesting and important conversations about the potential points of connection and disconnection between a focus on disability and on chronic illness. 

We hope that you have enjoyed reading about why Cripping Breath is special to us. Stay tuned for a similar post coming soon where our wonderful Community Researchers will blog about the Community Researcher Cooperative and what’s motivated them to get involved in the project. They have just, last month, taken up paid roles within the team to undertake data collection and analyses, as well as support with other project activities. Their knowledge and expertise is invaluable and we can’t wait to start working together!