Preface
Navigating Approaches to Impairment, “Disability” and Care in the Past: The Need for Reflection
Introduction
It is a pleasure to write this preface to a volume that will become essential reading for those working in this field. The health and general well-being of any society, past or present, can be argued as key features that underpin its very function. An ill and “disabled” society can affect that very function, as can poor access to health or related care. This is why health care is such an important component of any country’s infrastructure, albeit varying in availability and quality over time and space. While accepting that the experience of living with health problems and accessing care and treatment today are vastly different to living in the Palaeolithic, for example, there are some parts of the world today that have health care systems that function relatively effectively. They may variously provide efficient diagnosis and treatment at the point of need, help on prevention and healthy living, and access to general advice (including social care options). While recognizing that health care can be varied in availability and quality today, the experience of disease varies too across the world, and is very much driven by where people live and in which sociocultural milieu they reside.
How can the “here and now” help us understand the past?
It is perhaps worth dwelling momentarily on one health care system, albeit in a developed country, to show that it is worth considering the “here and now” against exploring the longue durée of mental and physical impairments, “disability”, and care. The National Health Service in Britain was launched on July 5th in 1948 under a Labour government, with Aneurin Bevan as Health Minister. It functions across the United Kingdom (England, Scotland, Wales and Northern Ireland), and was based on three core principles: that it met the needs of everyone, that it was free at the point of delivery, and that it was based on clinical need, and not the ability to pay (http://www.nhs.uk/pages/home.aspx, accessed 4/3/2016). However, as populations grow older and population numbers and composition change, pressures on this service are increasingly being seen, and there are disparities in care even across the four regions of the NHS in the UK. In a 2012 audit of health care across the UK significant differences in health outcomes were found (National Audit Office 2012, 4). For example, “in 2008–2010, average life expectancy at birth varied for men from 75.9 in Scotland to 78.6 in England, and for women from 80.4 in Scotland to 82.6 in England”. Similar disparities were also evident in healthy life expectancy and in “standardised mortality ratios”, which take account of the make-up of each nation’s population in terms of age and gender. However, such measures of outcomes largely reflect general standards of public health – and therefore the need for healthcare – rather than the performance and effectiveness of the health services. There are also media reports to indicate that even within the same country of the UK, care varies (http://www.rightcare.nhs.uk/index.php/atlas/nhs-atlas-of-variation-in-healthcare-2015/, accessed 4/3/2016). One headline here was that older people in some parts of England are much more likely to be admitted to hospital because of the unavailability of the right care in their community.
Imagine now how varied care for individuals and communities was likely to have been in the past. This is notwithstanding the wide variation in how the same diseases would have affected different people in varying ways along a spectrum, how those people may or may not have developed impairments and whether those impairments affected their overall mental and/or physical well-being. This is in addition to thinking about if our ancestors had access to health care, with the quality and quantity of said health care likely to have been very varied. As the papers in this volume show, the subjects of impairment, “disability” and care are usually intertwined both in the past and the present and are, overall, extremely complex to navigate; this is particularly so when using bioarchaeological data. I believe that having an underpinning awareness of the “here and now” is essential to be able to appreciate the potential underlying nuances that bioarchaeological and other types of data present to us.
Understanding the nuances of people’s experiences of illness, impairment, “disability” and recovery
This volume has a focus on the treatment of people with impairments and “disabilities” in the past and their care (e.g. in the Palaeolithic – Thorpe; 19th century USA - Phillips), including animals (e.g. Thomas), and specific therapeutic agents (e.g. Willows, and King), alongside the ways in which people at different points in the life course received care (e.g. Lewis, Kendall, and Dawson on children, Gowland on the older generation), or indeed neglect. The volume also includes a very welcome consideration of the evolution of care (i.e. Doat). While exploring how care systems have evolved is imperative to understand the “long view”, it is also important to remember that the need for and quality of care through the life course will vary (from “cradle to grave”; see Public Health England 2014), as will the type and quality of care through the course of a disease affecting any one person (e.g. see Roberts 2016).
In providing this preface, I come from a background of nursing prior to entering academia and (unintentionally) staying with the latter. It was therefore a revelation to me as my career progressed that I could increasingly use what I learned in nursing to understand care in the past in its broadest sense, including inferring “disability” (Roberts 1988; 1991; 2000; 2014). Training in the 1970s and spending most of the three years “on the wards, and learning on the job”, unlike nurse training today, I learnt very quickly to think holistically, and consider the “care of the whole”. It was not just a matter of medical or surgical treatment of a person for an illness or injury, but a consideration of the “whole person”, physically, mentally and socially. As Hippocrates indicated in the 5th to 4th century BC, it is more important to know what sort of person has a disease than know what sort of disease a person has. I particularly learnt about people from a huge cross section of society. While there is a move in medicine to a more personalized approach, albeit today focused on using a person’s genetic profile to make decisions on prevention, diagnosis, and treatment of a disease (Muir Gray 2013), nursing care in the 1970s in particular was personalized. This likely reflected perhaps more time and money available to address personal circumstances, and how each person’s needs varied, even with the same illness or surgical intervention. Even at discharge, personal needs were accommodated and community care rapidly put into place to allow patients to go home to their community. While care in a hospital therefore could be personalized then, and people had time and energy, we had the capacity as nurses to provide “added value”, for example by talking to patients, providing a helping hand to get them better, and to engage with them as people, i.e. individuals in their own right.
However, the most important thing I learnt in nursing, and particularly relevant to this volume, was about disease and injury related “disability”. In my work as a nurse I appreciated that each and every person is an individual who will react to and express the same disease in their bodies in many different ways, along a broad spectrum, will have similar and different signs and symptoms, and recover at different rates. This set me up well for understanding and interpreting bioarchaeological data for disease and injury. It is also important to consider that people’s immune system strength will affect whether they experience illness and how severe that disease may be manifest. This has for me become extremely relevant as I study the evidence for leprosy in skeletal remains where different types of leprosy can be experienced along an immune spectrum (Ridley and Jopling 1966). I also quickly appreciated that as a bioarchaeologist it is impossible to talk to the “patient” and learn about their personality and emotions. This led me to the conclusion that we must respect these limitations when trying to understand the past and not over interpret the data. Indeed, even the personality characteristics of a well person can predispose them to later illness (e.g. see Smith and MacKenzie 2006), the persona of an ill person (and their care-giver) may affect the progress of their illness and recovery (e.g. see Fredrickson and Levenson 1998, Peterson et al. 2006; Reich and Schatzburg 2010, and many others), and even having a view from your hospital bed can aid recovery (Ulrich 1984)!
Impairment, “disability” and care in the past
“Disability”
The World Health Organization (http://www.who.int/topics/disabilities/en/, accessed 4/3/2016) defines “disability” as an umbrella term that covers impairments, activity limitations, and participation restrictions. Impairment is defined as a problem in body function or structure, an activity limitation, a difficulty that has an impact on performing a task, and a participation restriction is something a person experiences. As it says, “it is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives”. The International Classification of Functioning, Disability and Health, a classification of health and health-related domains, being the WHO framework for measuring health and ‘disability’ at both individual and population levels, is particularly relevant here (http://www.who.int/classifications/icf/icf_more/en/, accessed 4/3/2016). Overcoming the difficulties faced by people with “disabilities” requires interventions to remove environmental and social barriers. This is the social model of “disability”, or the way society is organized that prevents a person with “disability” functioning normally. On the contrary, the medical model focuses on the illness as being the problem, and something that must be “fixed”. It is also clear that impairment may be something people are born with (congenital) or developed later in life. This has implications for their experience and how communities might treat them. If we consider that over a billion people today have some form of “disability”, this is 15% of the global population (http://www.who.int/mediacentre/factsheets/fs352/en/, accessed 4/3/2016), and that there are also up to two million adults who have “significant problems in functioning”; this is a global challenge that continually needs addressing.
We do know, nevertheless, that people (and animals) can adapt to having an impairment, but that this depends much on the person themselves and the characteristics of the disease and related impairment (e.g. see Farzad et al. 2015 on the little correlation of impairment with “disability” following a hand injury). We can also see adaptation at its extreme, for example at the London 2012 Paralympics; such impressive athleticism was apparent often with what appeared to be considerable impairment. However, we should also realise that impairments can be temporary or permanent, major or minor, and visible and invisible, the latter particularly having implications for “treatment” by communities. All these factors affect a person’s experience of their impairment. Impairment has of course been documented by many in bioarchaeology, as seen mainly in evidence in skeletal remains. Having just a skeleton and appreciating that impairment may affect only the soft tissues, or both bones and soft tissues, makes for a challenge in interpretation, alongside trying to consider related symptoms. For example, how much pain was experienced? In clinical literature it is clear that there are differences in perceptions of pain, pain thresholds in men and women, and whether pain is even experienced (e.g. Faccia and Williams 2008; Tschugg et al. 2015), and there are differences between the sexes in functional limitations (e.g. see Faccia and Williams 2008; Young and Lemaire 2014). Therefore, we might see a disease affecting the skeleton and know from the clinical literature that it can cause pain, but how can we actually know if the person experienced this symptom (e.g. see Roberts et al. 2016)? While impairment was likely present in the past, as seen through the lens of skeletal evidence for disease, interpreted using a clinical base, even if this was the case, “A disability is only one aspect of an individual. In history, people have often forgotten that the individual is more than the sum of their disabilities” (Covey 1998, 42).
Care
Care is defined as the provision of what is necessary for the health, welfare, maintenance, and protection of someone or something. Any person past or present has varied and different needs, whether they are old, young, male or female, and according to their individual illness. Associated with “disability” or indeed any illness accompanied or not by “disability”, there may be social stigma, which could have affected how a person was treated within their community and even cared for (e.g. see Roberts 2011 on a comparative study of leprosy and tuberculosis). However, as Dettwyler (1991, 382) usefully highlights, “There is a wide gap between survival and being treated nicely”.
It can be very challenging indeed to infer care in the past using any form of evidence. Some of the questions that need to be addressed might be: who received care, was it just physical care or was the person’s mental well-being also considered, did care changed throughout the time a person experienced a disease, and was it effective? In bioarchaeology, evidence of “care” may be directly visualized (e.g. trepanation, amputation, dentistry, or even wound care), or indirectly gleaned through interrogating historical documents or “reading” artworks. For example, a wealth of historical documents tells us that “disability” and care was a part of the experiences of past societies, but it is not always clear who was cared for and how. Likewise, bioarchaeologists who have documented disease and injury in skeletal remains may also have inferred “disability” and the provision of care. For example, in Frayer et al.’s (1987, 62) study of a late Palaeolithic skeleton representing an adolescent from Italy an assumption was made that “he must have been supported by members of his social group despite his severe handicap and limited ability to contribute to subsistence and other economic activities”. Speculation is fine of course, if the evidence is supportive.
There have also been assumptions about how a person was treated with specific diseases, for example that all people with leprosy were ostracized (but see Roberts 2002), and that communities built institutions into which ill people were incarcerated, for better or worse. While these institutions were opened, for example leprosy hospitals (e.g. see Magilton et al. 2008) and sanatoria (for people with tuberculosis – e.g. see Roberts and Bernard 2015), it cannot be assumed that each and every person with leprosy or tuberculosis was admitted nor, if they were, that they received decent “care”. Care itself in an institution may be available along a broad spectrum of quality and quantity from none, through abusive to excellent. It could however be argued that “structural violence” (Farmer 1996) could be inherent as a result of the founding of “institutions”, which might encourage stigma and “imprison” patients. As noted in this volume, a recent development in exploring personalized “care” has come from Tilley and Cameron (2014). This web-based method allows a much more nuanced and detailed understanding of the possibility that, firstly impairment was present as evidenced in the skeleton, and secondly that care may have been provided. Using a clinical base for understanding, and contextualizing the skeletal data, we are beginning to see a more objective, rather than subjective, approach to “disability” and “care”. Nevertheless, it does inherently make scholars focus on the individual (“osteobiography”) rather than the population at large, and therefore while a detailed understanding of that person’s experience is achieved, this cannot be applied more widely to the rest of their community.
Final thoughts
Exploring impairment, “disability”, and care in the past is, without doubt challenging and complex, as this volume highlights, but it should take a multidisciplinary, holistic approach, including the consideration of ethnographic data. However, the provision of care is and has been an inherent aspect of human behaviour, and its observation provides a window on compassion. We also have to appreciate that the consideration of “disability” and care must take an evolutionary approach, not only at the individual level, but from a life course perspective, and over time and space. Such studies must also consider views of the body, concepts of disease and treatment, levels of anatomical knowledge, and knowledge of care and treatment, which of course were likely passed down through the generations. Varied community responses to impairment and “disability” may also have led to changes in the built environment, and “treatment” of people at death (funerary context). Studies must also show clinical understanding of specific diseases and associated impairments affecting people in the past, as Tilley and Cameron (2014) have emphasized. A person’s age, sex, gender, social status, ethnicity, and religion also have important parts to play in interpretation. It may also be instructive to use documented skeletal collections with individual life histories. Integrating data on contemporary socio-cultural and political/economic context with that from skeletal remains is of course essential. Finally, we should remember that humans and other animals can, very effectively, adapt to circumstances in which they find themselves. We should not make assumptions necessarily that a person with X disease or injury was impaired or “disabled”. I encourage scholars working in this field of study from all disciplines to engage with the papers in this volume, and to embrace their recommendations. It is particularly pleasing to see younger scholars producing important contributions. This subject matter will undoubtedly be developed and continue to contribute towards debates surrounding care-giving in the past, utilizing a range of archaeological and historical evidence.
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