Blog post #9 Let’s talk breath and politics

• This blog post focuses on our presentation for Pint of Science, an event that creates an opportunity for scientists to share their research with the public in pubs, bars and cafes.
• Our presentation focused on the politics of breathing, using three examples, two of which we discuss in this blog post: inequalities exacerbated by COVID-19 and the impact of air pollution. 
• We also spoke about ventilation (on the eve of World Home Mechanical Ventilation Day), raising awareness of what this means for people, and how Cripping Breath will centre the experiences of those who have their lives saved and sustained by ventilation.

Earlier this week, on the eve of World Home Mechanical Ventilation Day (#AddingLifeToYears) we had the amazing opportunity as part of the UK’s Pint of Science Festival to talk to people in Sheffield about an issue that is really important to Cripping Breath - politics! Our talk was part of a session dedicated to the issue of ‘Power Plays & Policy Puzzles’ and we headed down to Neepsend Social Club. The venue was friendly and welcoming, and soon started to fill up - the organisers had to find extra benches!

The  fantastic Pint of Science team had put together a range of fascinating presentations, although unfortunately there were only two on the night due to illness. After listening to a powerful talk on what happens when politicians lie, and coming third in an impromptu pub quiz(!), we took to the stage to speak about breathing as a political issue.

We wanted to talk about politics for a couple of important reasons.  Firstly, Cripping Breath starts from a disability justice perspective; by ‘cripping’ breath we are standing with communities of disabled and chronically ill people and our work is therefore political.  Our politics and the ethics of care we bring to the study of ventilated lives means we consider lived experiences of disability and chronic illness to be valuable and we see them as a desirable, productive part of the world. And secondly, putting breath and politics together seems a bit odd - in fact you might be thinking, what’s politics got to do with breathing? Surely that’s just something that happens (without thinking most of the time) in people’s individual bodies. What’s breathing got to do with society, with being a citizen or indeed with policymaking, governments or power? Turns out, if we think about some of the most pressing social challenges of our time, breath isn’t so tangential afterall. Let us explain using two examples we mentioned in our talk.

COVID-19

As we all know, COVID-19 is a respiratory infection and it has caused millions of deaths around the world. However, one’s chances of becoming seriously ill or dying from COVID are greater for members of particular social groups. Inequalities in COVID-19 mortality are evident in lots of data collected about the pandemic and this data shows that these inequities persist.  For instance, The Health Foundation reported in 2022 (after the so-called peak of the pandemic), that mortality rates were still 3 or 4 times higher in the most deprived areas, and higher among people from minority ethnic groups.

Inequalities in relation to COVID also relate to disability and ableism; in November 2020, the ONS reported that disabled people accounted for 59% percent of deaths from COVID-19. People with learning difficulties were given do not resuscitate orders during the second wave of the pandemic, causing potentially avoidable deaths and raising serious ethical questions about access to, and prioritisation of, health resources and how these decisions reflect ideas about whose lives matter most in our societies. Disabled people reported disruption to their medical treatment, reduced access to social care and restrictions on other aspects of day-to-day life. The recommendation to ‘shield’, staying at home without face-to-face contact, and socially distancing from others in the same 

household, was a very isolating experience. Many disabled and chronically ill people - particularly those with respiratory conditions - continue to practice forms of shielding to this day, especially at times of the year when there are high levels of respiratory infection - such as winter months.

There is also a social legacy of the pandemic (NatCen, 2022), with those communities experiencing greater marginalisation and poverty before the pandemic finding it harder to recover from the social and economic hardships that the pandemic intensified - issues such as cost of living crisis, unemployment, the closure of local supports and amenities and loss of education and social opportunities for young people. Thus, whilst the virus that causes COVID lurks inside the body and attacks our lungs and the physiology of breathing, it has also impacted the social fabric of our communities and exacerbated health and social inequalities. In other words, it has socio-political consequences too.    

Air pollution 

We are also living at a time of increased pollution - air pollution is now the second  global risk factor leading to premature death. The World Health Organisation (WHO) estimates that in 2019 a staggering 4.2 million premature deaths worldwide were due to people’s exposure to air pollution, which causes cancers, cardiovascular diseases and respiratory illnesses. According to the organisation Clean Air Fund, air pollution now kills more people than tobacco worldwide. It quite simply has disastrous impacts on both the planet and human health.  

Therefore the decisions we make as nation states and a global community around how we are to tackle (or not) climate change and air pollution have an impact on people around the world. These consequences are not equal however - in fact, the World Health Organisation estimates that 9 out of 10 deaths attributed to outdoor air pollution are in low-and middle-income countries like Afghanistan and India which have some of the highest pollution levels. It is especially unfair that often these nations are the least responsible for producing dirty omissions.  Exposure to pollution is not inevitable and policies and interventions (such as traffic control measures like the Clean Air Zones in Sheffield) being implemented in some places and not others (whether that’s at a global, national or community level) create unequal chances of becoming ill as a result of encountering pollution in daily life. Overwhelming research shows that those living precarious lives experiencing poverty in areas of high deprivation (such as built-up, inner city areas with inadequate housing and close to main roads) are disproportionately exposed to poor quality air and more vulnerable to its effects. We know that often communities who live in these areas face multiple barriers to living healthful lives such as unemployment, a lack of local amenities and discrimination like racism, or in the case of disabled people, ableism. These forms of marginalisation which we can see through the lens of air pollution are political; they are issues of social and environmental injustice. 

Home mechanical ventilation

Fittingly, on the eve of World Home Mechanical Ventilation Day, we were also able to speak to the audience about using ventilation and contribute to HMViP’s aim of raising awareness. While we (Julie and Jen) do not personally have lived experience of ventilation, we were able to draw on experiences from within the Cripping Breath team, including introducing the audience to Betty and sharing insights from our community researchers on the challenges and opportunities of ventilation. We set out how Cripping Breath centres the experiences of people who have had their lives saved and sustained by ventilation, and the way we intend to explore these through arts-informed, archival, narrative and ethnographic approaches. The audience were interested and engaged, asking about historical perspectives on breathing and pollution, potentially varied experiences in different NHS Trusts around the country, environmental and green policy considerations, and how we envisage the findings from Cripping Breath can have an impact in the world.

It was an interesting and enjoyable opportunity to take the idea of Cripping Breath out to the public, and we’re both looking forward to presenting findings from the project at future events. And finally, if you are interested to learn more about how breathing is a political matter, take a look at our recent blog post about the costs of breathing written by Libby Bligh, our community researcher colleague, which was posted earlier this week!