Lectures

Workshop report: ‘Interrogating Speculative Futures: A workshop on the politics of imagining a future with(out) chronic illness’

In 1992 Nancy Munn argued anthropological research should pay more attention to people’s lived realities of time. Since then, we have seen time and temporalities grow into a much-studied topic in anthropology and the broader social sciences, with various research publications (see, for example, Bryant and Knight 2019; Baraitser 2017; Moroşanu and Ringel 2016; Sharma 2014), workshops, and conferences dedicated to this concept. 

One such workshop, ‘Interrogating speculative futures: A workshop on the politics of imagining a future with(out) chronic illness,’ which took place online on 19 and 20 July 2021, was organised by Natashe Lemos Dekker (Leiden University) and Natassia Brenman (Goldsmiths), and facilitated by the Centre for Invention and Social Process at Goldsmiths, University of London, the UK Economic and Social Research Council, and Leiden University.

With two keynote speakers, Prof. Ayo Wahlberg (University of Copenhagen) and Dr Rebecca Coleman (Goldsmiths), and twenty-two scholars who presented their papers, the workshop brought together a range of perspectives on and conceptualisations of speculation and temporal imaginings in chronic illness. As part of the programme, artists Romily A. Walden and José Sherwood Gonzalez showcased their artwork on disability, chronicity, and futures in an online exhibition.

Inspired by the work of Alison Kafer (2013), the workshop explored the limits of technoscientific promise – the “curative imaginary” – and sought to move away from assumptions about the limits of a life with chronic illness. The presenters discussed how medical technologies, diagnoses, everyday life with chronic illness, and end-of-life care interrupt and transform temporalities and produce futures and presents. The studies covered a wide variety of chronic conditions, including dementia, young onset Parkinson’s disease, osteoporosis, cancer, chronic pain, and others.

Keynote lectures

Prof. Ayo Wahlberg reflected on the ‘speculative turn’ in the social sciences, differentiating between three modes of speculation about chronic illness. At the macro level, where healthcare policy is made and financial efficiency prioritised, chronic illness is quantified and culturally understood as a burden on society. At the institutional, meso level, people with chronic illness are treated at outpatient centres, such as general practitioner surgeries, specialised and community care clinics. In these clinics, patients with chronic illness are approached as bodies in deterioration and the main mode of speculation is the deferral of deterioration. At the micro level, people find ways to adjust to everyday life with chronic illness. Prof. Wahlberg concluded that the role of medical anthropologists is to question assumptions and make sure that the knowledge about living with chronic conditions in daily lives is taken seriously and valued alongside other types of expertise.

The second keynote speaker, Dr. Rebecca Coleman, explored glitter as a material to speculate about futures, politics, and methods. She became interested in the material during a creative workshop in which she invited young women to collage their imagined futures. Their use of glitter opened up possibilities for wonder. Inspired by the theory of fabulation, Dr. Coleman approached glitter as a material through which futures may be creatively imagined and narrated, and highlighted the importance of countering normativities of who is able to speculate and imagine the future.

Focussing on chronic illness, this workshop showed the state of the art in contemporary research on the concept of speculation. Below, we identify three main themes that were discussed in the workshop presentations: power and politics, control and craft, and values and norms.

Power and politics

Power and politics are central aspects of practices of speculation. How do power mechanisms influence modes of speculation? Who gets to speculate about and imagine the future? Which inequalities are (re)produced as a result?

In his study on  the politics and consequences of campaigns aiming to end AIDS in the UK, Chase Ledin argued that the futures these campaigns imagine are not informed by the realities of those living with HIV/AIDS, and in fact, amplify pre-existing social inequalities. Barbara Pieta drew attention to how the first Italian National Dementia Plan implicitly propagated two contradictory ‘care scripts’: one aligning Italy with dementia care plans in other European countries, and one focussing on family care. However, family members of people living with dementia had specific future orientations that were not represented in this plan.Elspeth Davies also drew attention to health policies not fitting recipients’ lives.In her study of oesophageal cancer prevention in the UK National Health Service (NHS), she exposed tensions between incurability and curability, managing risk and what is desirable, raising critical questions about  the inequality these prevention efforts may reproduce.

David Armstrong unpacked the dominant role of medicine in future-making. He argued that medicine colonises the future, firstly, by pathologising bodies and processes previously thought of as a natural part of the life course and ageing; secondly, through risk factor prediction; and thirdly, through prognosis, which increasingly defines diagnosis and illness. Sevasti-Melissa Nolas sought to counter such biomedical colonisation of the future, specifically for people living with fibroids. She drew attention to the power of speculative language in medicine, such as ‘benign fibroids’ and countered it with her (partially auto-)ethnographic study of living with fibroids. She illustrated how the word ‘benign’ might indicate an absence of harm in medical terms, but benign fibroids may still be experienced as harmful in everyday life.

Taken together, these studies showed that perspectives on the future in national plans or campaigns may not fit the reality of the people they target, and fostered awareness about who and what has the power to speculate about the future, thinking through the politics and consequences of exclusion and possible ways to counter it.

Control and craft

Control and craft are also central to modes of speculation. How does speculation play a role in attempts to craft, change, or control the future? How do we prevent or defer unwanted futures (Lemos Dekker 2020)?

Ulla McKnight and Catherine Will presented on speculative intervention in practices of reducing anti-microbial resistance in sexual health clinics in the UK. They explored which kinds of knowledge are used and needed to prevent the less desirable futures in which anti-microbial resistance increases. To do so they used an experimental visualisation technique to speculate about the unknown.

In her study of a clinical trial to find a preventative drug against dementia, Natassia Brenman contrasted two speculative gaps: one wherein the preparatory work is already being done while there is no drug yet to be tested in the clinical trial; and one wherein the participants preparing for the trial are not yet showing symptoms. Brenman proposed a brain health ‘otherwise’, which is always in the making and lived through time, thereby shifting the emphasis from controlling the future to living in the present (Brenman 2021). Similarly, Els Roding’s study addressed preventing chronic futures of living with a pressure ulcer. She explored how the medical device industry uses and co-produces the idea that most pressure ulcers are avoidable through products and education. Both Brenman’s and Roding’s presentations focussed on attempts to control or prevent chronic conditions from happening in the future.

Other presentations focused not on preventing a condition, but on controlling the future in an attempt to avoid associated risks. Margret Jaeger and Stefanie Schaden introduced the plans for their study of premenopausal osteoporosis in women in Austria. They argued that there is little consensus about recommendations for bone breaking prevention, while this can have a big impact on women’s lives. This study exemplified the common tension between what needs to be sacrificed in the present to attempt to change the future without knowing what this future will entail or would have been without the sacrifice. Similarly, Isabel Briz Hernández discussed terminal cancer patients travelling to China to participate in trials with immunotherapy, hoping for a possible treatment, weighing the costs and benefits. Hernández explored the temporalities of hope and care, arguing that the trials move patients’ perspectives from an inevitable death to ‘a temporal stage in which patients and their family are pushed to continue to craft a future’ in which there is no cure yet.

Branwyn Poleykett, in her presentation on people who are forced to look for solutions outside of biomedicine to extend their life with chronic illness, explained how in Dakar, Senegal, working class marginalised people living with multiple chronic conditions manage their diseases in their social context without regular access to a doctor or medication. In a similar vein, Peter Whitehouse and Danny George looked outside of biomedicine to think about Alzheimer’s prevention. In their macro approach, they used Alzheimer’s disease to critique neoliberalism, challenging us to speculate about the future of living with and preventing dementia not only through biomedical frameworks, but through a framework focussed on healthy communities. Annelieke Driessen challenged the biomedical and societal stigma of life with dementia as negative or burdensome, describing a project in which she invited people to write a letter to their potential future self with dementia, asking how such an activity might help change the present for people living with dementia.

In the attempts to control and craft futures highlighted by these presenters, people try to prevent chronic conditions from occurring or prolonging life with a chronic condition, deferring severe symptoms or death. They might look to biomedicine or outside of biomedicine for help, but there is often a tension between actions in the present to change a future that was not certain to begin with.

Values and norms

A third, prominent theme during the workshop was that of values and norms in speculation. Which futures are desired? Which values substantiate these imaginaries, and what norms does this create? How can we think the future otherwise?

Lewis Johnstone, for example, discussed how day-to-day life of couples living with young onset Parkinson’s disease was disrupted, and how they constantly reimagined and adapted their expectations. Similarly, Katarzyna Król discussed how Polish parents imagined a good life for children living with a rare congenital metabolic condition, arguing that the parents’ imagination was limited to the diagnosis and biomedical options available to them.

Both Ilias Kamal Risat and Natashe Lemos Dekker further unpacked normativities at the end of life. Ilias Kamal Risat presented on palliative care practices and the idea of the good death in palliative care centres in Dhaka, Bangladesh. He argued that, on their deathbed, people were disappointed in medical advancements available to them, and were afraid of becoming a burden to their family. Natashe Lemos Dekker discussed expectations and normativities around the end of life with dementia in nursing homes in the Netherlands. She unpacked the management of death and dying as future-oriented and as future-making and showed that in trying to make sense of and influence the temporal dimensions of death, time becomes a ‘vehicle’ through which life and death are valued.

Jenn Tarr reflected on the need to recognise the sociality of pain, understanding it as a response to personal and social circumstances. She emphasised the need for research to recognise that pain can be given legitimacy in various ways and to be aware which version of pain is being reproduced in research.

Finally, Anna Dowrick, Tanvi Rai and Kaveri Qureshi addressed the experiences of people belonging to racially minoritised groups in the UK who are recovering from Covid-19, asking how the virus affected their lives and views on the future. They showed that while some imaginations surrounding infection were unspeakable, these still affected how people lived with the virus.

These presentations showed how societal norms affect future imaginations. They also addressed possibilities for change and formed an invitation to imagine the future otherwise.

Conclusion

Interrogating Speculative Futures: A workshop on the politics of imagining a future with(out) chronic illness provided a space for critical reflection on the relationship between daily and future living with chronic conditions in diverse geographic and socioeconomic contexts.

Participants addressed the intricate ways in which chronicity may open up as well as foreclose futures; what kinds of futures are desirable or unwanted; and questioned normalcy, unpacking power dynamics and normativities at various scales. We have seen examples of how policies and medical treatments seek control over, or aim at preventing chronic futures, and have explored some of the meanings and values attributed to chronic living in the present.

We would like to thank all the participants for their critical and generous engagements with each other’s work and for creating such an inspiring space to think together. We are curious to see where the field will move next and hope to see this theme being explored further. 


Els Roding is a PhD candidate at the London School of Hygiene and Tropical Medicine. In her Wellcome funded project she ethnographically studies practices of pressure ulcer prevention and treatment in an NHS hospital as well as the role of the commercial medical device industry. Els approaches the concept of pressure both as an analytical tool and as a topic of study to explore the pressure on the NHS in relation to the pressure on patients’ skin. Next to her project Els enjoys bringing people together to learn from each other and creating (academic) support networks. Twitter: @elsroding

Dr Natashe Lemos Dekker is a Postdoctoral Researcher and Lecturer at the Institute of Cultural Anthropology and Development Sociology at Leiden University. Her research focuses on death and dying, grief and end-of-life care, and dynamics of time and future-making in the Netherlands and Brazil. She was awarded her PhD from the University of Amsterdam, and has published in the Journal of the Royal Anthropological Institute, Death Studies, and the Journal of Aging Studies, among others. She was a visiting scholar at the Université de Montréal and is a board member of the Medical Anthropology Europe Network (MAE) of the European Association of Social Anthropologists (EASA). Twitter: @NLemosDekker

Dr Natassia Brenman is an ESRC Postdoctoral Research Fellow based at Goldsmiths, University of London. Her research uses ethnographic methods to explore the technologies, temporalities, and spaces of mental health and care. Natassia is currently developing work on time and technology in the emergent field of brain health. This speaks to a longstanding engagement with the changing face of psychiatric diagnosis, and recent work on timing and speculation in dementia prevention. Natassia received her PhD from the London School of Hygiene and Tropical Medicine in Medical Anthropology, and she currently holds an honorary position at the University of Cambridge. Twitter: @NFBrenman

References

Baraitser, Lisa. Enduring Time. London: Bloomsbury, 2017.

Brenman, Natassia F. and Richard Milne. “Ready for What?”: Timing and Speculation in Alzheimer’s Disease Drug Development.” Science, Technology, & Human Values (2021). ISSN 0162-2439.

Bryant, Rebecca, and Daniel M. Knight. The anthropology of the future. Cambridge: Cambridge University Press, 2019.

Kafer, Alison. Feminist, Queer, Crip. Bloomington: Indiana University Press, 2013.

Lemos Dekker, Natashe. “Anticipating an unwanted future: Euthanasia and dementia in the Netherlands.” Journal of the Royal Anthropological Institute (2020). DOI: 10.1111/1467-9655.13429.

Moroşanu, Roxana, and Felix Ringel. “Time-Tricking: A General Introduction.” The Cambridge Journal of Anthropology 34, no. 1 (2016): 17–21.

Munn, Nancy D. “The cultural anthropology of time: A critical essay.” Annual review of anthropology 21, no. 1 (1992): 93-123.

Sharma, Sarah. In the Meantime: Temporality and Cultural Politics. New York: Duke University Press, 2014. https://doi.org/10.1515/9780822378334


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