Leprosy and identity in the Middle Ages

From England to the Mediterranean

David Cantor, Elma Brenner, François-Olivier Touati

• Verlag: Manchester University Press
• Jahr: 2021
• ISBN:
  9781526127440
• Thema: Geschichte
• Thema: Sozialgeschichte

For the first time, this volume explores the identities of leprosy sufferers and other people affected by the disease in medieval Europe. The chapters, including contributions by leading voices such as Luke Demaitre, Carole Rawcliffe and Charlotte Roberts, challenge the view that people with leprosy were uniformly excluded and stigmatised. Instead, they reveal the complexity of responses to this disease and the fine line between segregation and integration. Ranging across disciplines, from history to bioarchaeology, Leprosy and identity in the Middle Ages encompasses post-medieval perspectives as well as the attitudes and responses of contemporaries. Subjects include hospital care, diet, sanctity, miraculous healing, diagnosis, iconography and public health regulation. This richly illustrated collection presents previously unpublished archival and material sources from England to the Mediterranean.

Part I

Approaching leprosy and identity

1

Reflections on the bioarchaeology of leprosy and identity, past and present

Charlotte Roberts

Leprosy is an infectious disease caused by a bacterium, Mycobacterium leprae or lepromatosis. It is transmitted to humans via the respiratory route through inhalation of bacteria-laden droplets from the lungs of an infected person. Leprosy affects the skin, nerves and other parts of the body, including the skeleton, but the way the body is affected will depend on the type of leprosy a person experiences, along leprosy’s immune spectrum.¹ People with low resistance to leprosy will most probably contract lepromatous leprosy, or the type of leprosy that is usually reflected in skeletons from archaeological sites. People with high resistance contract tuberculoid leprosy; these would be the people we would not necessarily recognise so easily in the archaeological record and they may not even have any bone changes. Based on the evidence relating to ‘new cases’, today leprosy remains a challenge to manage in Brazil, India, and in some parts of Africa and southeast Asia. The modern perception, certainly in ‘developed’ areas of the world, is that it has been ‘conquered’, because the number of new ‘cases’ is low.² However, people in many parts of the world continue to experience the consequences of the disease, even after they have been officially ‘cured’.

Surprisingly, the history of leprosy remains shrouded in mystery and infiltrated with myths promulgated by nineteenth-century writers, myths that are beginning to be dispelled as scholars re-evaluate the evidence of the past.³ It has been suggested that people with leprosy in the European medieval period (twelfth–sixteenth centuries CE) suffered socially because of the associated stigma, and were ostracised wholesale from their communities into leprosy hospitals. This idea is now increasingly unsupported, even though it is well known that leprosy-related stigma remains very apparent today.⁴ This chapter addresses some of the key questions we still have about how people lived their lives with leprosy in the past, and the responses of individual people and their communities to leprosy. In doing so it aims to contribute to a better understanding of the complex nature of leprosy and of the experiences of the people affected by it.

The social consequences of leprosy, and the present and past of identity

What is particularly defining about people who experience leprosy, past and present, is the social consequences of the disease for the lives of those affected. Relevant to this is how leprosy can define a person’s identity – identity basically being described as personal and social – but overall reflecting the characteristics that make a person an individual and unlike any other human being. Of course, people without leprosy can have the same and different characteristics: for example, two people may be biologically male and of the same age, but their genetic profile will be different, and they may do different work and have different religious affiliations. All these ‘identity variables’ will affect what diseases people contract and, specifically in terms of religion for example, how they may cope with those diseases and what care may be available to them.⁵ Personal identifying characteristics such as age, biological sex, ancestry, genetic profile and overall health are very much interlinked with the social aspects of a person’s identity, such as their status, ethnicity, occupation, religion, political and social-system affiliation, gender, and the presence or absence of impairment. These social aspects are also encompassed within the economic system and diet they experience; the local and general environment and climate in which they live; trade and consequent contacts, along with their mobility; and whether they have access to health care. Particularly relevant to this chapter is a person’s social system, as well as the religion that he or she practises, both of which can determine how a person is to be ‘managed’ at their death.

While exploring the relationship between aspects of identity and the health problems experienced by individuals is easier to explore in living populations, this is not the case when looking to the past. Indeed, as many scholars have emphasised, in studies of archaeological (human) skeletal remains (bioarchaeology) there can often be a focus on just one or a few ‘identity’ characteristics, for example biological sex, gender and social status, rather than looking at the ‘bigger picture’.⁶ There has also been some debate about when and where the use of the word ‘identity’ first started to occur in bioarchaeological research. However, some conclude that bioarchaeologists have always considered aspects of ‘identity’ – as outlined above – when interpreting data from human remains, including the evidence for disease; it is just that they have not tended to use the word until fairly recently!⁷

The complexities of identity

It should be remembered that ‘Identities are socially constructed, situational, and fluid.’⁸ Therefore, when considering the relationship between identity and leprosy, it is necessary to be holistic in approach because

1as we have seen, many features comprise a person’s identity

2personal and social aspects of identity are usually intimately entwined and often cannot be separated out from each other.

For example, although clinical data suggest that leprosy affects men more than women (e.g. only 38.8 per cent of new ‘cases’ in 2015 were women),⁹ there are many factors that might lead to these figures. For example, women with leprosy in India today (compared to men) may experience later diagnosis (and treatment) because of their social role in the family, and experience much more severe social consequences of being diagnosed with the infection. Thus, delayed treatment may lead to impairment, ‘disability’, marginalisation, poverty, loss of employment, or even their partner. One study of women in India found that they were generally poorly educated, were isolated and lived in poor conditions, and therefore were at a high risk for leprosy.¹⁰ The authors of another study found that most women in their analysis, also in India, did not have a basic knowledge of leprosy and did not understand the cause and spread of the disease.¹¹ Additionally, certain age groups are more susceptible to developing leprosy. Today in endemic areas there is a peak in frequency between 10 and 14 years of age, and then another rise from about 30 years onwards, the latter age category having the highest frequency.¹² That all said, it is poverty that is a major driver for leprosy today; some research has found that people with leprosy are undernourished compared to control groups without leprosy, and this can be related to poverty.¹³ In relation to occupation, a study of productivity loss due to deformity in leprosy in India found that 30 per cent of men and 60 per cent of women with leprosy were less likely to be employed compared to a control group, and that men earned 14 per cent (and women 38 per cent) less than the controls, even though they worked the same number of days.¹⁴ A study of whether employment influences how impairments develop and compromise activity in people with leprosy highlighted that there were specific impairments that affected what jobs people could do.¹⁵

Of course, personal identifying characteristics are usually intrinsic and cannot be easily changed: for example a person’s biological sex; their unique genetic profile, which may make them more or less susceptible to disease; and their ancestry. For example, one study has documented the genes that influence the immune response to the leprosy bacterium and subsequent infection.¹⁶ However, socially identifying characteristics can alter through a person’s life course, and fac...