Keeping Up with the Future: Health & Citizenship Post-Pandemic Times
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When Covid-19 impacted the UK emergency Covid laws and guidelines were created by policy makers to deal with the unfolding issues, one strategy was to introduce the idea of the ‘Household Bubble’. This was an attempt at creating a new understanding that if successful might help us, Citizens, policy makers, scientists alike, better understand and deal with the virus. It was a strategy that acknowledged that what information scientists, policy makers and citizens needed to know in order to keep each other safe was held within what we were doing together. It introduced the idea that we could think of ourselves relationally – people to people and people to their environment – in bubbles. This relational understanding of our interdependency and our environment is something already understood within Disabled communities described through the Social Model of Disability (Shakespeare, 2010). The way we treat each other affects our access to fundamental needs, health and wellbeing. Unhealthy environments and inaccessible services can adversely affect our collective health, even beyond pandemic times.
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Within the margins of society the impact of our environment, both social and ecological, has been and continues to be detrimental. During the pandemic in the UK, pre-established inequities in access to healthcare have been and continue to be magnified. These adverse relationships can be easily traced within the newly defined bubbles. Households that include Disabled family members who are reliant on the unpaid care of their kin have been put at great risk. Especially when that kin still has to attend work in person at the bequest of employers or in order to pay essential bills. This has affected kin in low-paid precarious work and service jobs more acutely than others. The homes of both young, working age and senior Disabled folks have experienced a lack of understanding, support and protection. This is compounded by previous intersectional health inequalities relating to socio-economic status and environmental factors. ‘In England and Wales, males of Black African and females of Black Caribbean ethnic background had the highest rate of death involving COVID-19’ (Office for National Statistics, 2020). Latest figures show that Disabled people account for every 6 in every 10 Covid deaths (BBC, 2021). Our valuable links of care have been acknowledged epidemiologically but are not well understood or supported socially. In my research I hoped to better understand these social connections and interdependencies that are so entangled with our collective health.
The Project & Complexity
This new idea of Household Bubbles highlighted something that we don’t yet seem to address within overarching pre-established policy: 1) Relationships of care are ever-present and complex 2) How we act collectively, not simply as individuals, can shape people’s lives, health, wellbeing and mortality 3) We experience fluctuating capacities, interdependencies and relationships of care together all the time and this fluctuation is magnified during pandemic times.
Actively addressing access and our interdependent relationships of care was paramount to this research project. I set out to better understand households who experience Disability and unpaid care responsibilities (kin care) during unfolding post-pandemic times. Centring Citizen-led inquiry, I worked with communication experts across disciplines (Education, Wellbeing, Civil Service & Hospitality) who also had personal lived experience of both kin care and disability. In the later stages we refined this to participants/households of refugee heritage and invisible disability due to the experience of those involved in the project. Together we scoped better understandings of the experiences that many households face. I hoped to better understand these experiences in relation to our pre-established institutional understandings, policy design methods and shifting nature of novel pandemic times.
Key pre-pandemic insights that emerged:
- Differing communication methods and languages inhibit easygoing knowledge sharing between medical settings, researchers/evaluators and such household bubbles.
- In households of kin care, the barriers that affect each household member individually will affect them collectively i.e if a kin carer is affected by a barrier that barrier will affect Disabled household members too – they live interdependently.
- Pre-pandemic policy often expects individuals to access support and services as individuals via siloed routes – this in turn affects how the service is evaluated and what data is collated.
- Qualitative methods often aren’t relational and therefore atomise/individualise a lot of experiences that in the real world are entangled and interdependent.
- Many kin carers experience a disability or chronic illness themselves due to the impact care work has on their day-to-day physically and emotionally.
- Most folks with whom I worked would not tick the box on evaluation forms or understand themselves to be ‘Disabled’ or ‘Unpaid Carers’ despite meeting the criteria on paper.
We found that all these issues can be overlooked at a greater and exacerbated scale during fast-paced and volatile post-pandemic times. Due to this complexity we found often that our pre-established institutional case studies (and subsequent methods/definitions such as personas) were not successfully engaging with and capturing the experiences of folks from such households. This has seemingly had a detrimental affect on research for policy and service design during both pre and post-pandemic times.
Participatory Scoping and Methods
Using remote and sensory object interviews, the expert participants and I explored what might better engage folks in participating in or leading research projects into Disability or kin care if a) they are skeptical of the institutional setting or b) didn’t believe they should take up space and agency within this setting due to the aforementioned insights. We found that shared understanding and wanting supporting others in similar situations were the biggest incentives to participate. Past experiences of racism and ableism in institutional settings, lack of understanding, and fatigue were the greatest issues to negatively impact people’s likelihood to participate.
Utilising what we had learned we considered what would move us through some of these complex hurdles. We used appreciative enquiry to explore ‘what enables you to feel comfortable sharing your experiences’. We used avatars to represent people in the participants’ lives without disclosing any identities. We shared dialogue around these characters from participants’ real experiences of ‘Where and when they had felt comfortable sharing their stories’. This enabled them to disclose experiences that could be re-shared with anonymity. Any identifiable information was filtered through made-up characters. This was a methodology inspired by my experience in devised theatre through my background as a theatre designer. In devised theatre members of the company, typically in a community setting, create a script within the rehearsals through character building and improvisation. Often the resulting performances express stories of significance for the community.
An Emerging Method Innovation
The result of this project was that of the Emerging Community Persona: an engagement and research method alive to shared experience and changing times. It is designed to bring folks into the fold of citizen-led research or Participatory Action Research through their emerging shared circumstances. An initial group of experts with lived experience devise a ‘voice’ that represents the collective community experience. This voice offers kinship of understanding inviting others in similar circumstances to join the conversation. You are likely to feel a resonance with the voice if the details it describes match your day-to-day perspective. It is built out of the knowledge of what care and invisible disability is like in an experiential and relational way. It then has scope to generate richer shared understandings as it evolves with who participates. This has scope to deliver kinship, recruitment and leadership across different media (radio, tv, pamphlet and online) making the offer more holistically accessible. It is an engagement method designed to engage those whose experiences are novel and emerging, not pre-defined by existing case study (perhaps those experiencing long COVID) and those who don’t identify with pre-existing labels (ie kin/unpaid carers who don’t relate to the terminology ‘kin/unpaid carer’). Limitations include the pace at which it can be devised and the labour involved in participating. This will be something to address within future iterations and inquiry. Future versions have scope to explore and give immediate qualitative data on novel social phenomena with no pre-existing definition. They could also help our understanding as we expand our knowledge of under-researched (or unsuccessfully engaged with) experiences. This is an emerging methodological guide designed for post-pandemic societies where novel experiences are fast-paced and prevalent and institutional labels do not yet resonate with tangible real world experiences.