Blog post #2 Telling different stories of breath and ventilation

This week is National Storytelling Week and in the spirit of celebrating the ‘power of sharing stories’, today’s blog is about telling different stories about breath and ventilation.

For those of us who research people’s stories in the areas of health, illness and disability, there is a strong academic tradition around the ideas of narrative and story. When we think about illness and disability, we may be aware of ‘prevailing’ or ‘dominant’ narratives, such as the ‘restitution narrative’ identified by the sociologist Arthur Frank, which can be summarised as: “Yesterday I was healthy, today I’m sick, but tomorrow I’ll be healthy again” (Frank, 1995). This is a familiar story that we’re comfortable with, a story where illness is temporary, where people get better. Various researchers have explored how people struggle with not being able to tell this story, particularly when illness profoundly affects their sense of self. Similarly, people who tell stories of becoming disabled may struggle with a loss of a previous self, as highlighted in work by Brett Smith and Andrew Sparkes (2002) on men who played rugby football and experienced spinal cord injury.

However, as Sparkes and Smith (2002) argue, focusing on individual stories pays less attention to the ‘narrative resources’ people have available. When we tell stories, we draw on recognisable stories that are available to people like us, living in a particular society at a particular time. Carol Thomas, an academic specialising in disability studies and the sociology of health and illness, has highlighted some of the recognisable ‘public narratives’ around disability, such as disability as a so-called ‘personal tragedy’, or narratives that emphasise concealing ‘imperfections’ (Thomas, 1999). She argues for the value of challenging these dominant stories, through the sharing of different stories, and the developing of ‘counter-narratives’ that are more self-affirming.

In relation to our topic of breath and ventilation, there are examples of people sharing their stories, for instance on the Home Mechanical Ventilation in Partnership website. Here, people share their stories of using home mechanical ventilation (HMV) for neuromuscular conditions, COPD (chronic obstructive pulmonary disease) and OHS (obesity hypoventilation syndrome). Several of these stories reflect a restitution narrative, as they emphasise increasingly disruptive symptoms that are relieved by HMV. Stories, particularly from patients with COPD, emphasise the impact of HMV, which is presented as ‘life-changing’ (‘It really has given me a new lease of life’, ‘It’s opened up my life again and changed it for the better’ and ‘I’ve had 100% benefit of using the machine’). 

The stories presented here can also be about reclaiming a sense of self. As an example Gill’s video highlights a tension between events that happen to her (‘I can remember being dragged’, ‘I had to be taken in a wheelchair’) and her as a more active narrator, both as a young woman making decisions and living a ‘very full’ life (‘I was always going off and doing things’) and as a patient determined to overcome a COPD diagnosis (‘I clawed my way back’). The final point she makes, ‘I wouldn’t be here now without the machine’ highlights how HMV has allowed Gill to maintain a sense of self.

Looking at these individual stories offers a broadly positive view of mechanical ventilation as something (whether a ‘friend’ or a ‘piece of equipment’) that relieves symptoms and allows the opportunity to take part in various activities. Nevertheless, the people sharing their stories here also demonstrate how ventilation devices can be negatively associated with dependency (it’s ‘scary to hear that you need something that’s going to help you breathe’). These ideas have also been identified in various research studies, that recognise both individual stories of ventilation devices allowing more independence and maintaining a sense of self, and public narratives of ventilation meaning less independence and a loss of self.

What is also clear from these stories, is that these are not just people’s personal stories of their relationships with particular ventilation devices. More generally, there are references to issues of accessibility, including the design of homes and other buildings, attitudes of others, and access within health systems. The term ‘institutional narratives of identity’ (Loseke, 2007) has been used for stories that work within institutions like the National Health Service and have consequences in terms of policy. As an example, conversations within the Community Researcher Cooperative have highlighted an institutional narrative that bringing home ventilation devices into hospitals poses a risk. This can cause delays for people who use these devices, and impacts on the care received. Stories about individual illness and the use of medical technologies are also stories about disabling circumstances, about a lack of joined-up thinking, about negative attitudes among health professionals and the public more generally, and about a world that could be different. 

Understanding what it means to live with ventilation means listening to both stories of opportunity and disabled joy, and to the more challenging stories of discrimination, precarity and fear. For those of us without lived experience of ventilation, our responsibility is to listen to these stories without silencing or downplaying, being open to challenging our assumptions, and sitting with our own uncomfortable emotions. The National Storytelling Week theme of ‘reimagine your world’ seems an apt one here, as we celebrate the power of stories that allow us to reimagine the world of breath and ventilation, and think differently about the public and institutional narratives that shape the stories we hear.

References

Frank, A. (1995) The Wounded Storyteller: Body, Illness and Ethics, 2nd edn., Chicago: University of Chicago Press.

Loseke, D. R. (2007) ‘The study of identity as cultural, institutional, organizational, and personal narratives: theoretical and empirical integrations’, The Sociological Quarterly, 48(4). 661-688.

Sparkes, A.C. and Smith, B. (2002) ‘Sport, spinal cord injury, embodied masculinities, and the dilemmas of narrative identity’, Men and Masculinities, 4(3), 258-285.

Thomas, C. (1999) ‘Narrative identity and the disabled self’ in M. Corker and S. French (eds.) Disability Discourse, Buckingham; Philadelphia, PA: Open University Press.