In popular culture, ventilation—or having air provided to your lungs with support from a machine—gets a bad rap. In movies and TV shows ventilation is often shown as a last-resort option for those who are terminally ill. This is at odds with the reality of ventilation as a liberating intervention which helps improve quality of life for people with all kinds of disabilities and illnesses. Because of this common misunderstanding, Dr Kirsty Liddiard at the University of Sheffield is leading a five-year programme of research funded by the Wellcome Trust called Cripping Breath. The programme aims to develop a ‘new cultural politics of respiration’, or reshape current understandings of respiration and ventilation by working with disabled, chronically ill and ventilated people.

Pathfinders, in collaboration with Cripping Breath, hosted an online session called: ‘My Life with Ventilation’. The event included a number of Pathfinders and Cripping Breath members who talked about their experiences of ventilation, including the past and current CEOs of Pathfinders, various doctors and researchers and members of the UpLift team. The session covered everything from using ventilation in the daytime vs at night, travelling with ventilation, and the use of ventilation in public life. The event was very well-attended, and a productive dialogue was sparked in the Q&A section, with attendants feeling comfortable enough to ask their own questions around ventilation usage.

The event was hosted by Dr Suzanne Glover, head of the Pathfinders Research Team and lead community researcher at the University of Sheffield. She introduced the session as revolving around living with ventilation within and outside of a clinical setting. The first speaker was Sarah Rose, a Pathfinders Trustee, who shared her experience of using non-invasive ventilation since she was a teenager due to a congenital muscular dystrophy. Sarah explained that everyone’s experience with ventilation is different, and she framed ventilation as a tool which improved her quality of life: allowing her to go out in public, on holiday, and attend her sister’s wedding. It was through ventilation that Sarah was able to build resilience and adapt to difficult situations in her life, and how she values it as the thing which lets her teach, travel, meet government officials, and do presentations.

Next up was Pathfinders’ own UpLift Project Lead Cath McNicol. Although she was travelling and could not attend in person, Cath shared a video discussing her own experience with Spinal Muscular Atrophy (SMA) and ventilation, focused around travel. Cath is an experienced traveller (visiting countries including Australia, Singapore and Japan), and she discussed the various questions travel organisations ask when you are a wheelchair user and require ventilation. She recommended bringing a spare ventilator and external battery if possible, and trying ‘life hacks’ to make the journey more comfortable: e.g., sitting a ventilator on a trestle tray on planes, or bringing a small flannel to cover up the beeping sound. Cath’s main takeaway from all her travel experience is to make sure everything is organised ahead of time, and to get advice from your home ventilation team.

Pathfinders CEO Jon Hastie was a last-minute addition to the roster, and he supplemented Cath’s discussion with his own travel experiences. Jon talked about starting to use ventilation at 22 and graduating to 24/7 usage after experiencing strange dreams and poor sleep. After a frightening experience while travelling when his single ventilator broke, Jon has always taken a second ventilator with him just in case. He also spoke about anxiety whilst visiting Denmark during his PhD, but having a plan helped lessen these feelings. Jon was candid about his confidence taking a knock when he started needing a ventilator during the daytime, but through repeated use these feelings diminished, and he soon came to see himself as a trailblazer for people who use ventilation in public. Although it has been an up-and-down journey, Jon said that he found ventilation to be both reliable and relatively routine to manage in his everyday life. 

UpLift and Engagement Support Officer Connor Brockbank spoke about an often-neglected aspect of using ventilation: its impact on dating and social lives. Connor described himself as a full-time, non-ambulatory wheelchair user with Central core disease, and how he resisted using overnight ventilation when first prescribed at 18. This was because he found it difficult to sleep with, but after getting used to using ventilation, he found his sleep improved enormously. Early on Connor would leave his ventilation equipment at home when sleeping over at other people’s houses out of embarrassment. However, Connor now needs his ventilator and always takes it with him regardless. In terms of practical tips for ventilation, Connor recommended speaking to your medical team about mask choice (as seal, fit and nighttime salivation can cause problems), screen brightness, loudness, and cleaning. Your ventilation equipment should work around your life and fit your preferences.

Former Pathfinders CEO and current Director of CRIPtic Arts Jamie Hale delivered a talk about where the ventilator users are in public life, as wearing ventilation in the privacy of your own home is a radically different experience than wearing one full-time. Jamie spoke about narratives of ventilation in popular media as signifiers of misery and death, rather than life-saving tools which empower and enable the way wheelchairs do. Jamie also discussed one of the few high-profile disabled individuals who publicly uses ventilation—House of Lords member Baroness Jane Campbell—and how getting a high level of visibility as a disabled person often involves ‘high status’ achievements, which many disabled people are excluded from. They contrasted this against theoretical physicist Stephen Hawking, perhaps one of the most well-known disabled individuals in popular culture, and how his use of ventilation was hidden and largely unknown to the general public. Jamie ended their talk by stressing the need for public-facing individuals who use ventilation to help normalise its use, and to encourage other ventilation users to feel comfortable in public. 

The final talk of the event was delivered by Dr Kirsty Liddiard and Jennifer Kettle: the former a Senior Research Fellow and the latter a Research Associate, both at the University of Sheffield. Kirsty is a feminist disability studies scholar and the principal investigator of the aforementioned Cripping Breath project. Kirsty talked about her own experience as a non-invasive ventilation user, and how Cripping Breath is a co-production project, meaning that it involves people with lived experience of ventilation. The goal of the project is to collect people’s stories in a multitude of ways, and to make information around ventilation accessible to a wider audience. Jennifer shared an animation about Cripping Breath, which aims to recruit people with experience of using ventilation devices. Jennifer encouraged anyone who is interested to contact her at j.e.kettle@sheffield.ac.uk and the webpage for the project at Everyday Stories of Breathing and Ventilation | Cripping Breath | The University of Sheffield.

The session concluded with a Q&A which will not be shared here for privacy reasons. The event gave a unique insight into the realities of using ventilation: a topic which often goes ignored even in disability spaces. We at Pathfinders hope that those interested will sign up for the Cripping Breath project and allow further lived experience stories around ventilation to be told. 

Written by Quinn Clark