Ensuring confidence and accuracy in COVID testing through effective instructions

Josefina Bravo and Sue Walker


Since December 2020, the approach to testing for COVID in the UK has shifted from self-administered home testing to mass testing in community sites. This means that going forward, an ever-expanding number of people will be training to deliver testing at their place of work. Although it has many advantages, the rapid tests being used for community testing are complex to operate, so ensuring that operators have clear and effective instructions is increasingly important to improve the accuracy of the tests.

The year 2020 was, without a doubt, a new experience for most. Testing technology became a mainstream topic in the media, and we saw an overwhelming requirement for COVD tests with variable types of sampling and new testing technologies emerging rapidly. The adoption of community mass testing in 2021 means that more and more people will need to train in order to operate point-of-care tests, that can be processed on site. A multidisciplinary team of experts in diagnostics and information design from University of Reading has been researching the ways in which better user instructions can improve the accuracy of COVID tests.

How design plays a part in the picture

By designing clear instructions, we can help operators to take COVID tests confidently and correctly. Instructions need to be user-friendly, and this means taking into account that people may be nervous or anxious when taking a test so clear explanation, reassurance and engaging verbal and visual messages are key. Evidence from past research has shown that effective instructions have plain words, a clear structure with steps, and combine images and text to clarify the actions of the user and positioning of the medical devices, among other features.

What we are doing

Our aim is to explore the information needs of untrained users for taking rapid tests and interpreting the results, and to design instructions to support them in taking tests confidently.

At the end of 2020, we designed prototype instructions for COVID antibody tests based on design best practice, a critical review of other current examples of home test instructions and the results from a survey of more than 120 people. Most importantly, we informed the design with research evidence about what works in instructional design.

We conducted a pilot study where we discussed the instructions with end users. Discussing early prototypes with end-users can reveal the initial impression caused by the instruction, and, for example, the perceived level of confidence in executing the test independently. It can tell you about perceived difficulty (the steps where there’s ‘room for messing up’), and expected use of the instructions.

Prototype of user instructions for antibody test using simplified instructions

What we have found so far

Preliminary results from our pilot reinforce that readers of instructions require clear language, diagrams and visual structure (through layout and typography) to understand and execute a self-administered test. Further, an instructional video that shows each step clearly was effective to explain how the test is done, and to demonstrate parts of the test that are complex or ambiguous. A combination of video and print/static instructions was deemed to be best for different activities (initial walk-though, executing step-by-step and monitoring progress) and provide the most access to multiple audiences. The combination of video and print was also picked out to be optimal for the different requirements of patients before and during the test.

https://research.reading.ac.uk/design-research-for-testing-diagnostics/

 Acknowledgement

The initial stage of the project was funded through the fantastic contribution of donors. Going forward in 2021, the work is funded by AHRC.

Coping with chronic conditions during coronavirus: A historical perspective

Not everyone can afford to be anxious about Coronavirus – some are more concerned about managing their long-term ailments. Amie Bolissian-Mcrae provides a historical perspective on this tendency, drawing on her Wellcome Trust-funded research on older people’s illness experiences in early modern England.

An old woman falling asleep over reading a book. Etching after Rembrandt. Credit: Wellcome Collection. Attribution 4.0 International (CC BY 4.0)

Lately, I’ve been calling my mum far more than usual. She’s seventy, lives in the most polluted part of East London, with an impressive list of chronic conditions I can’t spell, and also happens to be one of my very best friends. Every time I read a new terrifying statistic about the dangers of COVID-19 for older or ‘vulnerable’ people, I panic call her, which I’m sure is not annoying at all.

The other day, my opening demand, “Mum, mum…How are you?!”, elicited a response that made me pause: “Actually”, she said, “I didn’t sleep last night. My stomach is playing up, and I’m worried it’s because I’m not getting enough exercise”. Of course, at this point, I should have expressed sympathy and asked her if there was anything I could do to help. But, because I live in the self-involved bubble of doctoral research, what I actually said was, “Oooooh…that response is fascinating, because early modern diarists also seemed to be more preoccupied with their chronic conditions than with the raging epidemics around them…” Luckily, my mum has been incurably curious her whole life, and was happy to jump straight down this research rabbit hole with me.

 

Credit: A very old woman. Pencil drawing after Rembrandt. Credit: Wellcome Collection. Attribution 4.0 International (CC BY 4.0)

 

Like children and pregnant women, the ‘elderly’ have often historically found themselves classified as a vulnerable patient group, especially with respect to virulent epidemics.1 This was definitely the case in early modern England (c.1550-1750). Contrary to popular assumptions, there were plenty of older people around at this time (c.20% of adults were over sixty), and ageing was thought to bring its own specific health challenges.2 Medical books described old age as ‘A meer lump of infirmities’, and the ‘aged’ body too weak and decayed to be cured of most diseases.3

So, were those over fifty or sixty considered automatically doomed during times of plague? Well, no, it was more complex than that. ‘Old folk’ were in a unique medical category. In contrast to the current situation, the elderly were seen as the least likely to catch most infectious fevers. Lacking a modern understanding of immunity, or viral and microbial contagion, this had more to do with their constitutions. Old bodies were thought to be cold, dry, and clogged up, which meant that ‘hot diseases’ like fevers failed to spread through their shrunken, blocked passages, and cold flesh. However, according to medical writings, if the weak elderly did catch the plague or small pox then unfortunately, like today, they were also believed to be the most likely to die from them. What did this mean for those understood to be ‘old’ at this time?

When infectious diseases broke out in their communities, it is clear that older people did voice feelings of fear and distress. Some tracked the progress of plague and smallpox in their diaries, and most, in this highly religious period, begged God to keep their loved ones safe. But I have found far fewer expressions of personal anxiety about contagious disease. Rather, the overwhelming preoccupation for older people, women or men, was the day-to-day management of their existing, often chronic ailments.4

 

Detail of Interior with a surgeon attending to a man’s foot, and three other figures. Oil painting by a German (?) follower of David Teniers the younger. Credit: Wellcome Collection. Attribution 4.0 International (CC BY 4.0)

 

In the autumn of 1678, 63-year-old Essex farmer and minister Ralph Josselin was very anxious when his beloved adult daughter Bettie, and his ‘deare wife’ Jane, both fell sick of smallpox. He wrote that the news ‘entred deepe’ in him. He asked God ‘in mercy preserve her’ and the rest of the family, ‘as I trust in him he will’, and later added, ‘it proved so’, for both women happily recovered. Josselin was certainly worried for his family over this episode, but he does not appear to have been overly concerned for himself. By contrast, his personal concerns centred on his chronic ailment, a ‘very painful’ leg inflammation. Josselin detailed symptoms, treatments, anxieties, and prayers. Over multiple entries, he described the inflammation as ‘deeply sore and bleeds much’ and ‘running and bleeding’, he mentioned the surgeon whom he consulted – a Mrs Doughtie – and a ‘nutmeg’ medicine he took. Fears about epidemics were present, but they did not eclipse the daily embodied reality of pain and disordered health.5

Another example comes from the diary of the Norfolk gentlewoman Elizabeth Freke, aged about seventy, and suffering from a chronic cough, asthma and a ‘fixxt plurisy’. In the winter of 1712, Elizabeth recorded that smallpox entered her household. She was medically knowledgeable, and accustomed to treating herself as well as her family, friends, and neighbours. Her grandson and maids all contracted the disease and were treated at home, but when her manservant Isack fell sick, she wrote that she ‘putt [him] out of my house’. Freke’s explanation did not refer to fears about contagion at all. Rather, she writes that she is ‘very ill myselfe and quitt tired with docters and nurses for above neer two months’. Her long-term ailments had rendered her immobile: for a year she had ‘hardly bin across’ her chamber ‘without the assistance of two to help’. The daily management of this condition was all consuming, and it appears that the Isack’s illness was the final straw – she could not bear the additional inconveniences which it would have brought.6

 

Sofonisba Anguissola on her deathbed, Van Dyck, c.1625 Wikimedia

 

Why were these older people more worried about their long-term illnesses than contracting epidemic diseases?  It is possible that the diarists were aware of medical notions that the elderly were more resistant to these infectious fevers, although there is no explicit evidence of this. The sources suggest a number of other reasons.

  • The immediacy of the pain and other symptoms may have overwhelmed other considerations, especially notoriously agonising conditions like gout, pleurisy, and kidney stones, which were often described as ‘torture’. As the minister Robert Harris wrote in 1626, during some ailments ‘the soule…is so taken up and transported with paine & anguish, that it mindes nothing but what cannot be had, [such as] sleep and ease’.
  • Older people had lived through past epidemics. This may have given them the perspective to foresee a time when the plague had passed, but their chronic disease remained – threatening their health and wellbeing.
  • The third explanation centres on responsibility and control. Epidemics were widely interpreted as punishments for the sins of the whole community, rather than the individual’s wrongdoings. Conversely, most other illnesses, including chronic ones, were seen as ‘special providences’ for the patient, sent by God as a correction for specific sins or a test of faith. While this did not stop ordinary people from attempting to prevent or treat epidemic diseases, they did tend to view the eventual course of such illnesses as largely under the control of God. By contrast, the management of chronic symptoms, was the unique responsibility of the patient, and something to be continually monitored, reviewed, and described in their diaries. Rarely losing hope for a possible recovery, most older patients actively sought treatment and care for these long-term conditions, despite the raging epidemics outside their doors.

The assumption I’d made about my Mum – that her worries must surely focus on the threat of catching an infectious pandemic disease – was thus both mistaken and ableist. The term ‘underlying conditions’ is misleading, as it suggests that pre-existing health conditions are somehow hidden or buried.7 For some older patients, both in the past and present, this could not be further from the truth: chronic conditions were palpably apparent, and therefore understandably they took precedent over diseases not yet caught.

 

  1. I am using early modern terminology to describe older adults such as ‘old’ or ‘elderly’, but I am aware that these are not always appropriate nor accurate today.
  2. Joel Rosenthal, Old Age in Late Medieval England (1996), 171; For life expectancy rates, see: James Sharpe, Early Modern England: A Social History 1550-1760 (1987), 38-9.
  3. David Irish, Levamen Infirmi (1700), 123.
  4. So far, these have been the only two genders identified in the diaries.
  5. Alan MacFarlane ed., The Diary of Ralph Josselin, 1616-1683 (1976), 614-616.
  6. Ray Anselment ed., The Remembrances of Elizabeth Freke, 1671-1714, (2001), 286-287, 282.
  7. Robert Harris, Hezekiahs recovery (1626), 30.
  8. The term ‘Underlying conditions’ is used on the official UK government webpage about social distancing: https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults

 

More information on Amie’s project can be found here: https://blogs.reading.ac.uk/irhs/the-aged-patient-in-early-modern-england-by-amie-bolissian-mcrae/. She can be contacted at a.t.b.bolissianmcrae@pgr.reading.ac.uk or @AuntieAmie on Twitter.

 

Home & Alone: A historical perspective on self-isolation during coronavirus by Hannah Newton

Co-Director of the Centre for Health Humanities, Dr Hannah Newton, draws on 17th-century plague accounts to offer insights into the emotional impact of self-isolation

Yesterday, the British government announced its policy for slowing down the spread of the coronavirus (COVID-19) infection: ‘if you think you have symptoms’ of this disease, ‘stay at home and do not leave your house for 7 days’. While at home, maintain a distance of 2 metres between family members, sleep alone, and do not go outdoors. This policy is clearly essential – it will save lives – but some people are anxious about the loneliness that may ensue for those confined to their homes, especially the elderly who live alone.

Wellcome Images CC BY 4. This figure is a plague doctor; he wears a long beak mask which contains fragrant herbs, designed to protect against the perceived cause of plague – unpleasant odours. These masks were more common on the continent than in England; here, people were more likely to wear perfume, or to carry small metal vessels called ‘pomanders’, which contained aromatic oils.

A historical perspective on this experience may bring a degree of comfort. It reveals that people in other times have faced similar, and often far more extreme, circumstances. During the numerous outbreaks of plague in the seventeenth century, a disease that killed somewhere between 60 and 100 percent of those infected, royal proclamations in England required anyone suffering from this disease to be ‘shut up’ in their house for forty days and nights. Front doors were nailed shut, and the words ‘Lord have mercy’ were inscribed above. Guards were appointed to ensure no one left or entered, except for doctors.

 

Known by the rather ominous name of ‘locking-in’, this policy was a notorious source of distress for patients, despite its necessity. Richard Kidder, bishop of Bath and Wells, recorded in his diary that when plague broke out in his household in 1665, ‘No tongue can express the dismal calamity’ he experienced. His neighbours ‘dared not come near, and the provisions which were procured for us were laid at a distance upon a Green before my house’. Such deep loneliness was also voiced by the anonymous author of a pamphlet that criticised the practice: he pleaded, ‘Have pity upon us, and add not sorrow to sickness: O let us not be forsaken by men! It is dreadful to be shut up from all the comfort of society, from free and wholesome air, from the care of family and relations’.

 

For people at this time, what made the experience of loneliness worse was the belief that this emotion could cause or exacerbate disease. The aforementioned pamphlet writer lamented, ‘the very thought of a sad and dismal confinement, contracts first a melancholy [low mood], and then a fever, and at last a Plague’. Negative emotions like sorrow and fear were believed to cause the body’s life force – known as the ‘spirits’ – to shrink and evaporate, leaving the person vulnerable to infection, and death itself.

One of the most controversial aspects of locking-in was the fact that any healthy relatives and visitors who happened to be in the house when the plague first struck were required to be locked in with the sick person. A rare insight into the fears of these individuals as they contemplated catching the illness is conveyed in a poem by headteacher and clergyman, John Toy (1611-1663), published in 1638:

‘The father dreads to see his only son,

The son to see his father too doth shun,

The husband dreads his wife,

whom he with dear embraces used to hold,

The wife’s afraid her husband to behold,

Whom on kind arms she used to infold.

Whom most they love, must most of all avoid’.

The need to refrain from engaging in physical affection with loved ones was a huge challenge, particularly when it came to children. When fourteen-year-old Susanna Bicks lay dying of plague in 1664, she ‘took her little sister in her arms, and kissed her with much affection’. Her father quickly lifted the younger child away, and told Susanna ‘he already had too much to bear’ with her illness, and couldn’t face the sickness of his other daughter too. Nevertheless, parents themselves rarely forbore these intimate gestures, choosing instead to take the risk of catching the disease. Susanna was kissed by her parents despite the fact they tried to stop her from embracing her siblings.

 

The book cover illustration is a painting by Gabriel Metsu, ‘The Sick Child’; it depicts close physical contact between mother and daughter. We do not know, however, if her illness was thought to be contagious – it was not plague.

The words of the poet John Donne (1572-1631) sum up the experience of social isolation for many seventeenth-century people: ‘As sickness is the greatest misery, so the greatest misery of sickness is solitude’. For plague sufferers, the main way to combat this isolation was to commune with God in prayer. While religious succour is still very much alive in many communities today, perhaps a more widespread source of comfort will be phone and video calls.

 

If you are interested in reading more about 17th-century experiences of illness, please see Hannah’s two books, The Sick Childand Misery to Mirththe latter is available open access here. This research was funded by the Wellcome Trust.

Architecture of Pharmacies – Co-designing Pharmacy Spaces

Dr Ranjita Dhital, Lecturer in Pharmacy Practice (University of Reading), Principal Investigator of ‘Architecture of Pharmacies – Co-designing Pharmacy Spaces’: Pharmacy Research UK Leverhulme Fellowship (2018-2020), £44,972.

Pharmacy, Damien Hurst (Tate Modern)

Architecture of Pharmacies is an interdisciplinary arts-based research project which aims to understand how the physical and social spaces within community pharmacies are experienced by pharmacy service users and staff. This study will examine how the architecture of pharmacies may effect engagement with current and future pharmacy health services, and co-produce a community pharmacy design guide which could be evaluated in future research.

The community pharmacy is the most accessed health space in the UK and many other countries. However, we currently do not know what effects, for example, a small and cluttered pharmacy consultation room, pharmacy counter, shop floor or dispensary could have on pharmacy patients and staff. The community pharmacy profession has experienced significant developments over the years; however, spaces where these new pharmacy services are delivered have not been examined. What could this mean for pharmacy patients and staff? My study will investigate these questions by applying Experience-based Co-design (EBCD) and Photovoice methods to explore how community pharmacy spaces are experienced and how they could be optimised to engage patients with their treatment and support their wellbeing.

Collaborators: Professor Glenn Robert (King’s College London); Dr Jacqueline Sin (Psychology, UoR) and Dr Carolina Vasilikou (Architecture, UOR).

 

Publication

Dhital, R., Robert, G., Vasilikou, C., Gheerawo, R. and Sin, J., (2018) Systematic review on the effects of the physical and social aspects of the community pharmacy environment on pharmacy patients’ and staffs’ engagement with pharmacy health services. PROSPERO, UK

Luigi Groto: A blind author and prophet in sixteenth-century Italy, by Laura Carnelos

Dr Laura Carnelos, Collections Research Assistant in Typography & Graphic Communication at Reading, draws on her postdoctoral work at the University of Venice to illuminate the experience of a famous blind author, Luigi Groto

Luigi Groto (1541-1585), also known as the cieco d’Adria, was the most famous blind author of sixteenth-century Italy. Since birth, he had only been able to see lights and shadows, as he once told a female correspondent. Despite this almost total blindness, from his very childhood Luigi had displayed particular mnemonic talent and brilliant oratorical skills. For his singular ability to compose verses and recite on stage, he was called to entertain audiences in important public events organised by the Venetian Republic. Scholars of the health humanities can learn a great deal from Groto about sixteenth-century experiences of sensory disability.

Incapable of reading and writing alone, Groto sharpened his hearing, and used his ears as eyes. He regularly asked trustworthy friends if he could ‘borrow’ their eyes and hands in order to read and write. Grotto’s numerous works circulated both in printed and manuscript form, handwritten by his scribes (‘da’ miei scrittori’), who sometimes transcribed them directly during his performances, as he remarked in the introduction to his book, Le oration iitaliane, e latine.

Gasparina Pittonia, Portrait of Groto at 31 years old, xilography from Luigi Groto, Trofeo della vittoria sacra (Venice, S. Bordogna et F. Patriani, [1572]).

Groto was at the height of his career when he was charged with possession of prohibited books in 1567. Forbidden from teaching, one of his main sources of income, Groto even contemplated death as an alternative to having to beg for help in his reading, writing, and personal care. In his letters, Luigi wrote of his frustration of being deprived of an activity which had enabled him to study, as well as to interact with sighted people. Besides being blind, we know from Grotto’s letters that he did not consider himself a good-looking man, and his physical defects deeply influenced his social and personal life. Rejected by women of his own social status, he finally formed a relationship with a servant and concubine called Caterina, with whom he had two children (who he never recognised).

Perhaps it was this sense of isolation and powerlessness that prompted Groto to go on to construct his own identity as a blind prophet, which secured him much success and reward. In 1567, he predicted the overflowing of Italian rivers based on the reading of astronomical and physical indicators, and of the cabala. In 1570 he translated the first book of Homer’s Iliad, taking advantage of the rediscovered image of Homer as a divinely inspired sage, and almost comparing himself to the greatest Greek poet. In 1572, he edited Trofeo della vittoria, celebrating the Venetian victory against the Turks at the Battle of Lepanto, which he had foretold through astronomical signs and a special anagram.

Jacopo Tintoretto (workshop), Luigi Groto, ca. 1582. Municipio di Adria.

Through these publications, Groto’s image as a blind prophet, as well as a good-looking person, began to take shape. In his 1572 publication, Gasparina Pittonia, a friend of Groto and a renowned engraver, depicted his face with his physical defects: an aquiline nose, high cheekbones, and wrinkles on his forehead. However, ten years later these characteristics were visibly reduced in the portrait of the blind man by Tintoretto’s workshop. The motto, ‘he was blind, but he could see with his soul more than others’ (‘multum animo vidit, lumina cactus erat’), is emblazoned on the book that Grotto holds in the portrait, emphasising his inner sight and superior sensibility. We do not know if this inclusion was Grotto’s wish, but he did appreciate the painting in which, according to a friend’s description, he was represented in his ideal persona of literary man and blind seer, without any evident physical defect. This image of a blind prophet was reinforced nine months before his death, when Groto played the role of Teiresias or Oedipus (critics disagree about which) at the opening performance of the Teatro Olimpico in Vicenza. By acting the part of classical blind figures and disseminating his idealised portrait engraved and printed in his works, the construction of Grotto’s image as the prophetic blind man was confirmed.

Further reading

Laura Carnelos, ‘Street Voices. The Role of Blind Performers in Early Modern Italy’, Italian Studies, vol. 71 (2016), no. 2, pp. 184–196; Ead.,‘Cecità.La percezione di una (dis)abilità nella prima età moderna’, in S. Carraro (ed.), Alter-habilitas. Perception of disability among people, Verona, Alteritas, 2018, pp. 235-256.

 

Call for Participants: Global Health Humanities Workshop

This workshop, organised by Dr Rohan Deb Roy (co-director of the University of Reading’s Centre for Health Humanities), examines how biomedicine was received, reinterpreted and transformed in the non-western world in the twentieth century. Through case studies focussing on India, Palestine, China and Africa, it traces the various ways in which the medical category of ‘global health’ was consolidated in course of the last century.

We’re excited to announce that our confirmed speakers include Professor Mark Harrison, Dr Chris Wilson, Dr Mary Augusta Brazelton, and Dr Ann H. Kelly.

If you’re interested in attending the workshop, please RSVP to r.debroy@reading.ac.uk.

Many thanks to the CHH’s Social Media Manager, Amie Bolissian Mcrae, for designing this poster.

Facial Prejudice: the Last Taboo? By Marjorie Gehrhardt

Dr Marjorie Gehrhardt, lecturer in 20th century French history, tells us about a recent event she organised on experiences and representations of facial differences.

From The Phantom of the Opera to James Bond villains and The Undateables, visible facial differences are still overwhelmingly presented as signs of moral or intellectual flaws. On 20 November 2018 we held an event to challenge these negative associations and raise awareness of the still powerful unconscious bias against people with visible facial differences in twenty-first century societies. I hosted an evening lecture, by guest speaker James Partridge OBE, founder of the charities Changing Faces and Face Equality International. Funded by the Deans of Diversity and Inclusion, this event gave the audience an insight into the challenges experienced by James personally, and were inspired to stop taking facial differences at ‘face value’.

Looking different in a beauty-focussed culture

James shared his personal journey of physical and psychological recovery following a car accident at age 18, in which he had been severely burnt. In his own words, James ‘used to trade on his looks’, but his appearance changed dramatically as a result of his injuries. His talk emphasised the importance of surgeons and nurses, not just form a medical point of view, but also in helping him come to terms with the life-changing implications of his accident. How much to tell patients about their condition and when, how to facilitate the injured person’s first encounter with their reflection in a mirror, when to stop surgical reconstruction: these are all questions medical staff have to consider.

Surgery, James pointed out, has made tremendous progress since the time of the First and Second World Wars; however it is not always possible to restore looks to their pre-accident appearance. This is all the more difficult because of the prevailing visual diet that tells us that our happiness and success depend on us having perfect facial looks. Despite the recent success of more positive narratives, such as R.J. Palacio’s Wonder (2012), visible facial differences are still overwhelmingly associated with negative attributes and prospects.

James Partridge courtesy of Yakub Merchant

Challenging the unconscious bias against people with visible facial differences

Encouraged by his surgeon, James wrote a book, Changing Faces: The Challenge of Facial Disfigurement. In it, he seeks to give practical advice to enable other people going through a similar experience to live confident lives. The success of this book, and the work of Professor Nichola Rumsey (UWE) inspired James to set up the charity Changing Faces in 1992, with the mission of providing psycho-social help to people with visible facial differences in the UK. His aims, James told us, were twofold: on the one hand, to empower people with visible facial differences, and on the other hand to challenge unconscious prejudice within our societies.

Several awareness-raising campaigns followed, including the Face Equality Campaign. One of the key challenges is to help society uncover this unconscious bias. In order to do this, Implicit Attitudes tests have been used and the latest one, run in 2017, revealed that although the majority of participants said that they did not discriminate against people based on their facial appearance, 67% of them in fact held negative attitudes towards people who have disfigurements (against 90% in the 2008 IAT).

Despite the fact that people with visible facial differences are now protected from discrimination under the 2010 Equality Act, some myths about disfigurement are still very much present. Among those, James believes that three stand out:

  • Low expectations or pity: people with visible facial differences are thought to lead less meaningful lives, and less is expected of them at work/at school. This sometimes is due to an underlying belief that they are less capable, or that their visible differences reflect intellectual flaws. As a result, they might not achieve their full potential or be pitied and seen as ‘victims’ (a term James challenged the audience to stop using!)
  • Evil’: people with visible facial differences are sometimes thought to be morally flawed, an idea reinforced by stories and films associating facial differences with evil. This stigma was challenged in the short film Leo, starring Downton Abbey’s Michelle Dockery.
  • Fix it’: a third widespread myth sees facial differences as being entirely ‘fixable’, through the means of plastic surgery especially. People with visible facial differences are consequently perceived as unwilling to change and deliberately choosing not to ‘fit in’.

What next?

Although progress has been made over the last few decades, James invited us to challenge this unconscious bias when we see it reflected in the words we use or hear used, as well as in the media and in films. The latest campaign by Changing Faces specifically addresses negative representations of people with visible differences in films: #Iamnotyourvillain reveals how pervasive and damaging such representations of facial differences are still today.

James has now stepped down from his role as CEO of Changing Faces, and in the Autumn of 2018 he launched Face Equality International, an international alliance of NGOs committed to supporting people with facial differences, and to challenging appearance-based discrimination.

Workshop on the fabric of the human body

On the 7 and 8 November, the Centre for Health Humanities teamed up the University’s Arts Strategy, and was supported generously by the Heritage and Creativity Institute for Collections, in its running of a special workshop ‘On the fabric of the human body’. The event was organised around two gems in the Cole Library at the University, a first edition of Andreas Vesalius’s De Humani Corporis Fabrica (1543) and a first edition of Govert Bidloo’s Anatomia Humani Corporis (1685).

Vesalius

Bidloo

 

Five artists and a range of academics from the Centre got together to share their responses to these monumental anatomical atlases; we explored themes of movement and change, senses and perception, craft and medical knowledge and stories/storytelling in health practise and research. Activities involved a poetry session lead by poet and author Kelley Swain, a wax-modelling session lead by doctor and artist Simon Hall, a collage-making session with sculptor and anatomical artist Eleanor Crook, a movement/rolfing session lead by dance artist and rolfer Fiona Millward, and an insight into the realistic modelling of designer Agi Haines.

Early-modern marginalia

It is hoped that this very hands-on, artistic approach to the University’s collections, and the research of the Centre for Health Humanities, will lead to some exciting new collaborations between academic and artists, as well as some creative arts-lead responses to our special collections.

Stan the Skeleton kept the sessions in order and contributed some fresh insights

For more information about our Cole Collection, see: 

www.reading.ac.uk/special-collections/collections/sc-cole.aspx

And on each of our artist-partners, see:

eleanorcrook.net

agihaines.com/

simon-hall.co.uk/

fionamillward.com

kelleyswain.wordpress.com

Call for Papers: Disease & Ease, 1500-1800

University of Reading Conference, 1-2 July 2020

 

[Please note that the original dates for this conference were 3-4 July 2019, but one of the conference organisers has since found out she is expecting a baby, and will be on maternity leave in the summer of 2019, hence the new dates]

‘O how sweet is rest and ease after Sickness and pain!’, exclaimed the Lancashire minister and medical practitioner James Clegg (1679–1755) when he found himself ‘much better’ from a month-long ague. This 2-day conference will investigate what exactly sickness and health felt like for patients such as Clegg. We invite abstracts for 20-minute papers on the diverse sensations, emotions, thoughts, and spiritual feelings of patients and their families and practitioners from ‘the first invasion’ of illness to ‘perfect recovery’, chronic debility, or death. By encompassing all states, signs, stages, and outcomes of disease in early modern Europe and the wider world, Disease & Ease seeks to broaden and rebalance our overall picture of premodern health, showing that not all conditions ‘carried the patient to the grave’. Lately, a number of scholarly centres for the medical humanities have been restyled as centres for ‘health humanities’, a linguistic adjustment indicative of a growing desire to expand the remits of the field to incorporate a greater array of physical and mental states, including health itself. It thus seems an opportune moment to hold a conference which considers experiences of health and ease alongside sickness and suffering.

 

L0019338 P. Boone, Allegories of the senses (1651). Wellcome Library, London. CC BY 4.0.

Since Roy Porter’s call for a ‘medical history from below’ (1985), much has been written about the early modern patient. The first swathe of research focused mainly on patients’ practical responses to sickness, such as their choices of therapies and practitioners. In the 1990s, scholars became increasingly interested in the somatic aspects of illness, as exemplified in Barbara Duden’s seminal text, Woman Beneath the Skin. The bourgeoning of the histories of pain and emotions in the 2000s has significantly revitalized and enriched this research, and now – encouraged by the forthcoming meeting of the European Association for the History of Medicine and Health – a sensory approach has been added into the mix. Disease & Ease will showcase and evaluate these exciting developments, and consider current and future challenges and opportunities. Drawing on all manner of sources, from bed-sheets to doctors’ casebooks, the conference will enable us to reach a new level of empathy for patients in the past as well as the present, while forging fruitful links between scholars working in a variety of disciplines within the health humanities.

 

We are excited to announce two keynote speakers, Professor Michael Stolberg (University of Würzburg), a world-leading scholar of early modern experiences of sickness and death, and Professor Sasha Handley (University of Manchester), who is at the forefront of research on wellbeing and health, with a focus on the material culture of sleep.

 

Our conference will conclude with a compelling roundtable discussion on how the experience of health and illness has changed over time; discussants include expert patient and Ambassador for the MS Society and ADD International, Trishna Bharadia, philosopher of illness at the University of Bristol, Professor Havi Carel, specialist nurse Ros Badman, and general practitioner Dr John Jitan.

 

Possible themes for papers

  • Different health conditions, stages, and outcomes, including health, falling sick, being injured, undergoing surgery, the height of illness, death, revival and survival, recovery, convalescence, relapse, chronic illness, disability, infirmity, invalidism, etc;
  • Diverse aspects of patients’ experiences, including emotional, mental, physical, sensory, social, spiritual, political, or economic dimensions;
  • Specific signs, measures, or symptoms of illness and health, e.g. changes in sleeping patterns, mood and emotions, appetite and sensory powers, strength or weakness, and pain and ease;
  • Relationship between the body and soul or mind, and parallels or paradoxes in patients’ spiritual and bodily experiences.
  • Various perspectives, including patients and their families, carers or practitioners;
  • Variables in patients’ experiences, such as different genders, ages, constitutions, socio-economic backgrounds, countries, religious and ethnic backgrounds, and medical theories;
  • Special types of care provided to different health states – medical, surgical, emotional, spiritual, and social – from therapies designed to palliate the sufferings of chronically ill or dying patients to remedies to help lessen scars left by disease;
  • Variety of approaches and source types, including objects and material culture, manuscript and print, images and text, etc
  • Methodological and conceptual challenges and opportunities in this field of research.

 

Abstract submission

Please send the following information in one word document to Hannah Newton and Amie Bolissian Mcrae at diseaseandease@gmail.com by 1 February 2020:

  • Your name and a short biog or 1-page CV
  • Paper title
  • 250-word abstract

If you would prefer to organise a three-paper panel, please send one document containing all three sets of information outlined above, plus an overall panel title, summary of the panel’s themes, and the chair’s name. There will be no conference registration fee. Bursaries to the value of £90 are available for a limited number of postgraduate students and sessional or unwaged ECRs; please indicate if you would like to be considered for a bursary.

The conference is part of Hannah Newton’s Wellcome Trust University Award, ‘Sensing Sickness in Early Modern England’. Thanks to the Wellcome Trust for funding the event. 

 

The Aged Patient in Early Modern England

Amie Bolissian Mcrae provides a tantalising glimpse into the subject of her new Wellcome Trust-funded PhD project, ‘The Aged Patient in Early Modern England’. The PhD builds on her MA dissertation, which was awarded the Royal Historical Society’s Rees Davies Prize for the best MA dissertation in the whole of the UK!

Jan Lievens, Old Woman in Profile, c.1630

 

By Amie Bolissian Mcrae @

‘Old age must have been pretty rare in the past, so how can you study it?’ This is the response I often hear when I tell people about my MA dissertation and forthcoming doctoral project, ‘The Aged Patient in Early Modern England’. It’s just not true, however! Approximately twenty percent of the adult population was aged over sixty during the sixteenth and seventeenth centuries. It was common to have living grandparents, and to harbour hopes of living to a ‘good old age’ of seventy or more. Men and women worried about the illnesses of their ageing parents and loved ones, and paid avid attention to their own ailments as they aged.

‘An old woman gives a physician an urine sample for him to test. Woodcut by J. Amman, 1574?’ by Jost Amman. Credit: Wellcome Collection. CC BY

Here is an example. On her birthday in 1716, the Hertfordshire grandmother, Lady Sarah Cowper, wrote with trembling hands:

‘I am now 72 years of Age, very Crazie and Infirm, Lame with Rhumatick Pains in my Thighs … I now despair of ever getting Rid of It … Also my Hands Shake with the Palsey. I am Dull of Hearing, Dim of sight, and What Is worse a Cough Disturbs me Night and day; so as Life itself no Rellish Dos Afford’.1

This poignant diary entry, which first sparked my interest in what it was like to be old and unwell in the early modern period, raises questions that will be addressed in my new Wellcome Trust-funded PhD. How common was Lady Sarah’s gloomy attitude to infirmity in old age? What sensations, emotions, and spiritual feelings did the illnesses and weaknesses of old age evoke? Did patients and their loved ones seek remedies for the ‘accidents of old age’, or did they regard declining health as inevitable and untreatable, as some historians have implied? Who looked after elderly patients, and how did carers feel about this role? Finally, what was old age in a medical context? Was it seen as a natural process of decline, or a disease in its own right, with specific symptoms like watery eyes and brittle bones?

‘An old woman falling asleep over reading a book. Etching after Rembrandt.’ 1600s. Credit: Wellcome Collection. CC BY

Through examining a wide range of printed and manuscript sources, my PhD will investigate medical understandings and treatments of disease and ‘deterioration’ in old age, and explore the personal experiences of older patients and their families and carers in England, c.1570-1730.

What I find most exciting about this project is its capacity to reframe our understandings of both old age and disease in early modern England. It will show that illness and infirmity were intimately connected to notions and experiences of ageing: disease and disability were thought to age the body, and people ‘felt’ themselves old when they became ill or infirm. Not only will the study fill a major gap in the scholarship of old age and medical history, it will also be of great modern-day relevance, with potential to spark debates on the wellbeing and care of an ever-expanding ageing population.

Amie receiving the Rees Davies Prize for best MA dissertation in the UK at the Royal Historical Society’s Prothero Lecture on 6 July 2018, with one of her PhD supervisors, Dr Hannah Newton