Tải bản đầy đủ - 0trang
6 Case Study – Disability in India: Interweaving Legislative, Economic and Cultural Change
Disability and Chronic Illness
than 38 % of working age disabled people in India were employed (Cobley 2013:
In 2001, the United Nations General Assembly created a committee to begin
working on a disability-specific human rights convention. The process was notable
for its use of working groups including disabled people’s representatives, and in
December 2006, the UN General Assembly unanimously adopted the Convention
on the Rights of Persons with Disabilities (CRPD), which went beyond a social
model to also include a human rights orientated framework (Harpur 2012). As of
September 2014, The CRPD had been adopted by 158 countries and ratified by 151
countries. India ratified the CRPD in 2007, but did not adopt the Optional Protocol
which strengthens monitoring and implementation. While previous human rights
law formally included people with disabilities in, for example, the right to work,
there was room for interpretation as to what was required. Much of this room for
interpretation is removed by the CRPD; in its article 27 it requires specific measures
like equal conditions of work, reasonable accommodation in the workplace, and
opportunities for career advancement (Harpur 2012). Disabled people’s organizations are specifically included in the monitoring and reporting provisions.
The PWD Act of 1995 was clearly not compliant with the CRPD, so its ratification in India led to a debate regarding this law; should it be drastically amended, or
replaced? As required by the CRPD, extensive consultation with disabled people’s
organizations led to replacement; the draft Rights of Persons with Disabilities
(RPD) Bill (Government of India 2012) is a rights-based, rather than welfare-based,
piece of legislation which improves provisions for people with disabilities in a variety of ways. It was introduced into Parliament in February 2014 (India Public Sector
News 2014). The RPD bill is part of a broader 7 point plan which includes public
access; a disability ID for accessing of benefits; tax relief for family carers; and
income generation models (Indian Government news 2014). At the state and regional
level there are a profusion of new initiatives for job placement, self-help, income
generation, and education, which are provided by local NGOs, international NGOs,
state governments, and the private sector (Cobley 2013; Hiranandani et al. 2014;
This seems to be entirely a good news story, and yet, there are tensions to be
found in the neoliberal implementation of these new initiatives. Stable jobs in the
public sector are fast disappearing, and the new jobs for people with disabilities
appearing in the private sector are insecure, low-skilled, poorly paid, and have poor
working conditions (Hiranandani et al. 2014; Friedner 2013). For example, the hospitality industry is taking on disabled workers – such as the deaf brewmasters which
Café Coffee Day (CCD) are hiring in large numbers – as a matter of sound business
practice rather than as a matter of social equity (Friedner 2013). Deaf workers are
seen by CCD as diligent, cheerful, flexible, grateful for the work, and unlikely to
move on to other jobs. The company reaps publicity benefits by being seen as a
noble and caring employer. However, the deaf brewmasters are isolated at work, as
there is only one deaf employee per outlet. They are frustrated by the fact that they
are structurally prevented from progressing into management. They struggle to get
by on the low pay. They are also often concerned for their job security, because
CCD has a ban on employing people over the age of 35 (Friedner 2013).
An overwhelming number of job placements for disabled people are in such
insecure and low-paid work (Friedner 2013; Hiranandani et al. 2014). Demands for
reasonable accommodation in the workplace are seen by employers as too costly;
disabled employees are expected to adapt to conditions as they find them, and to
consider themselves ‘privileged’ to be working at all (Hiranandani et al. 2014). An
essentialised and idealised view of disabled people prevails, in which they are
praised for their strengths rather than their deficits, but these strengths are understood as those which create an ideal flexible employee, rather than a social, political
and economic agent (Hirananadani et al. 2014; Friedner 2013). In this manner, the
individual model of disability is changing in relationship to new disability discourses, but rather than a human rights based social model emerging, a neoliberal
individual model is beginning to come to the fore.
Impressive though the CRPD is, bringing the social model to fruition requires
more than legislative change. Economic, cultural and social transformation is also
necessary. The social model, from the outset, identified economic structure as central to the experience of disablement. As the Industrial Revolution moved economic
production out of households and into regimented factories, the space for inclusion
of, and participation by, disabled people greatly diminished. Now with the new
development of neoliberal modes of economic governance, spaces for economic
participation are opening up again, but in a flexibilised and insecure fashion.
In different ways, both the disability and the chronic illness literatures have hopeful
aspects. With its focus on coping, self-management, narrative reconstruction and
identity transformation, the literature on chronic illness demonstrates the resilience
of people living with even the most difficult long-term conditions. The disability
studies literature documents the many economic, legislative, social and cultural
advances that have been achieved through the actions of a disability movement,
working under a united sociologically informed model of disability.
These literatures also demonstrate the intense interweaving of legislation, policy
frameworks, social action, cultural change, and personal life experience in shaping
the life chances of disabled and chronically ill people. Stigma and social oppression
are core to the experience of people living with long-term conditions; however this
stigmatization is culturally specific and socially shaped. It takes different forms and
different intensities in differing historical situations. Therefore, there is every reason
to continue working for alleviation of the social, cultural and environmental barriers
chronically ill and disabled people face.
Disability and Chronic Illness
Annandale, E. (2009). Women’s health and social change. London: Routledge.
Asbring, P. (2001). Chronic illness – A disruption in life: Identity-transformation among women
with chronic fatigue syndrome and fibromyalgia. Journal of Advanced Nursing, 34(3),
Barker, K. (2011). Listening to Lyrica: Contested illnesses and pharmaceutical determinism.
Social Science and Medicine, 73, 833–842.
Barnes, C. (2012). Understanding the social model of disability: Past, present and future. In
N. Watson, A. Roulstone, & C. Thomas (Eds.), Routledge handbook of disability studies
(pp. 12–29). London: Routledge.
Barnes, C., & Mercer, G. (2013). Exploring disability: A sociological introduction (2nd ed.).
Bray, L., Kirk, S., & Callery, P. (2014). Developing biographies: The experiences of children,
young people and their parents of living with a long-term condition. Sociology of Health and
Illness, 36(6), 823–839.
Broom, B. (2007). Meaning-full disease: How personal experience and meanings cause and maintain physical illness. London: Karnac.
Buckingham, J. (2011). Writing histories of disability in India: Strategies of inclusion. Disability
and Society, 26(4), 419–431.
Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health and Illness, 4(2),
Bury, M. (2010). Chronic illness, self-management and the rhetoric of empowerment. In
G. Scambler & S. Scambler (Eds.), New directions in the sociology of chronic and disabling
conditions: Assaults on the lifeworld (pp. 161–179). London: Palgrave Macmillan.
Bury, M., & Taylor, D. (2008). Towards a theory of care transition: From medical dominance to
managed consumerism. Social Theory and Health, 6, 201–219.
Caron, C. (2008). Water wearing on a stone: The role of shame in the social construction of chronic
illnesses. In D. Driedger & M. Owen (Eds.), Dissonant disabilities: Women with chronic illnesses explore their lives (pp. 17–28). Toronto: Canadian Scholar’s Press/Woman’s Press.
Carpenter, M. (2000). Reinforcing the pillars: Rethinking gender, social divisions and health. In
E. Annandale & K. Hunt (Eds.), Gender inequalities in health (pp. 36–63). Buckingham: Open
Carricaburu, D., & Pierret, J. (1995). From biographical disruption to biographical reinforcement:
The case of HIV-positive men. Sociology of Health and Illness, 17(1), 65–88.
Charmaz, K. (1983). Loss of self: A fundamental form of suffering in the chronically ill. Sociology
of Health and Illness, 5(2), 168–195.
Charmaz, K. (1991). Good days, bad days: The self in chronic illness and time. New Brunswick:
Rutgers University Press.
Clucas, M. (2009). The Irish health disadvantage in England: Contribution of structure and identity
components of Irish ethnicity. Ethnicity and Health, 14(6), 553–573.
Cobley, D. (2013). Towards economic participation: Examining the impact of the convention on
the rights of persons with disabilities in India. Disability and Society, 28(4), 441–455.
Corbin, J., & Strauss, A. (1987). Unending work and care: Managing chronic illness at home. San
Francisco: Jossey Bass.
Coyle, F. (2003). Safe space’ as counter-space: Women, environmental illness and ‘corporeal
chaos’. The Canadian Geographer, 48(1), 61–74.
Crow, L. (1992, July). Renewing the social model of disability. Coalition News: Greater
Manchester Coalition of Disabled People, pp. 5–9.
Delaney, M., & Bell, S. (2008). The complexities of negotiating power under conditions of chronic
illness. In D. Driedger & M. Owen (Eds.), Dissonant disabilities: Women with chronic illnesses
explore their lives (pp. 29–40). Toronto: Canadian Scholar’s Press/Woman’s Press.
Dias, L. (2013). Disability and human rights – An Indian context. Social Development Issues,
Driedger, D., & Owen, M. (2008). Introduction. In D. Driedger & M. Owen (Eds.), Dissonant disabilities: Women with chronic illnesses explore their lives (pp. 1–13). Toronto: Canadian
Scholar’s Press/Woman’s Press.
Frank, A. (1995). The wounded storyteller: Body, illness and ethics. Chicago: University of
French, S. (1993). Disability, impairment or something in between. In J. Swain, S. French,
C. Barnes, & C. Thomas (Eds.), Disabling barriers, enabling environments (pp. 17–25).
Friedner, M. (2013). Producing “silent brewmasters”: Deaf workers and added value in India’s
coffee cafés. Anthropology of Work Review, 34(1), 39–50.
Galvin, R. (2002). Disturbing notions of chronic illness and individual responsibility: Towards a
genealogy of morals. Health, 6(2), 107–137.
Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs:
Government of India. (2012). The draft rights of persons with disabilities bill, 2012. New Delhi:
Ministry of Social Justice & Empowerment; Department of Disability Affairs.
Green, G. (2009). The end of stigma? Changes in the social experience of long-term illness.
Griffiths, T., & Patterson, T. (2014). Work capability assessment concerns. Journal of Poverty and
Social Justice, 22(1), 59–70.
Hansen, H., Bourgois, P., & Drucker, E. (2014). Pathologizing poverty: New forms of diagnosis,
disability and structural stigma under welfare reform. Social Science and Medicine, 103,
Harpur, P. (2012). Embracing the new disability rights paradigm: The importance of the convention on the rights of persons with disabilities. Disability & Society, 27(1), 1–14.
Hiranandani, V., Kumar, A., & Sonpal, D. (2014). Making community inclusion work for persons
with disabilities: Drawing lessons from the field. Community Development, 45(2), 150–164.
House, J. (2001). Understanding social factors and inequalities in health: 20th century progress
and 21st century prospects. Journal of Health and Social Behavior, 43, 125–142.
Hubbard, G., Kidd, L., & Kearney, N. (2010). Disrupted lives and threats to identity: The experiences of people with colorectal cancer within the first year following diagnosis. Health, 14(2),
Humpage, L. (2007). Models of disability, work and welfare in Australia. Social Policy and
Administration, 41(3), 215–231.
Hunt, P. (Ed.). (1966). Stigma: The experience of disability. London: Geoffrey Chapman.
India Public Sector News. (2014, July 28). Minister of State for Social Justice and Empowerment
Sudarshan Bhagat replies to a query on ‘National Disability Policy’; ATPUBS press release.
Indian Government News. (2014, August 23). States should emphasise on empowerment and
inclusion of disabled, says Minister of Social Justice & Empowerment, Gehlot; HTINGN press
Kawachi, I., & Kennedy, B. (1999). Income inequality and health: Pathways and mechanisms.
Health Services Research, 34(1), 215–222.
Kleinmann, A. (1988). The illness narratives: Suffering, healing and the human condition.
New York: Basic Books.
Kopp, M., Skrabski, A., & Szedmák, S. (2000). Psychosocial risk factors, inequality and self-rated
morbidity in a changing society. Social Science and Medicine, 51, 1351–1361.
Langstrup, H. (2013). Chronic care infrastructures and the home. Sociology of Health and Illness,
Link, B., & Phelan, J. (2001). Conceptualizing stigma. Annual Review of Sociology, 27, 363–385.
Disability and Chronic Illness
Lozano, R., et al. (2012). Global and regional mortality from 235 causes of death for 20 age
groups: A systematic analysis for the global burden of disease study 2010. The Lancet,
Marmot, M. (2004). The status syndrome: How your social standing directly affects your health
and life expectancy. London: Bloomsbury.
Morris, J. (1991). Pride against prejudice: Transforming attitudes to disability. London: The
Oldfield, M. (2013). “It’s not all in my head. The pain I feel is real”: How moral judgment marginalizes women with fibromyalgia in Canadian health care. Women’s Health and Urban Life,
Oliver, M. (1990). The politics of disablement: A sociological approach. New York: St. Martin’s
Oliver, M. (1996). Understanding disability: From theory to practice. Basingstoke: MacMillan
Oliver, M. (2013). The social model of disability: Thirty years on. Disability and Society, 28(7),
Ong, B., Rogers, A., Kennedy, A., Bower, P., Sanders, T., Morden, A., Cheraghi-Sohi, S.,
Richardson, J., & Stevenson, F. (2014). Behaviour change and social blinkers? The role of
sociology in trials of self-management behaviour in chronic conditions. Sociology of Health
and Illness, 36(2), 226–238.
Owens, C., Lambert, H., Lloyd, D., & Donovan, J. (2008). Tales of biographical disintegration:
How parents make sense of their sons’ suicides. Sociology of Health and Illness, 30(2),
Parker, R., & Aggleton, P. (2003). HIV and AIDS-related stigma and discrimination: A conceptual
framework and implications for action. Social Science and Medicine, 57, 13–24.
Pound, P., Gompertz, P., & Ebrahim, S. (1998). Illness in the context of older age: The case of
stroke. Sociology of Health and Illness, 20(4), 489–506.
Richardson, J., Ong, B., & Sim, J. (2006). Is chronic widespread pain biographically disruptive?
Social Science and Medicine, 63, 1573–1585.
Sanders, C., Donovan, J., & Dieppe, P. (2002). The significance and consequences of having painful and disabled joints in older age: Co-existing accounts of normal and disrupted biographies.
Sociology of Health and Illness, 24(2), 227–253.
Saunders, B. (2014). Stigma, deviance and morality in young adults’ accounts of inflammatory
bowel disease. Sociology of Health and Illness, 36(7), 1020–1036.
Scambler, G. (2009). Health-related stigma. Sociology of Health and Illness, 31(3), 441–455.
Scambler, G., & Hopkins, A. (1986). Becoming epileptic: Coming to terms with stigma. Sociology
of Health and Illness, 8(1), 26–43.
Scambler, G., & Scambler, S. (Eds.). (2010). New directions in the sociology of chronic and disabling conditions: Assaults on the lifeworld. Basingstoke: Palgrave Macmillan.
Shakespeare, T. (2006). The social model of disability. In L. Davis (Ed.), The disability studies
reader (2nd ed., pp. 197–204). New York: Routledge.
Shildrick, M. (2012). Critical disability studies: Rethinking the conventions for the age of postmodernity. In N. Watson, A. Roulstone, & C. Thomas (Eds.), Routledge handbook of disability
studies (pp. 30–41). London: Routledge.
Siegrist, J., & Marmot, M. (2004). Health inequalities and the psychosocial environment – Two
scientific challenges. Social Science and Medicine, 58, 1463–1473.
Stockl, A. (2007). Complex syndromes, ambivalent diagnosis, and existential uncertainty: The
case of systemic lupus erythematosus (SLE). Social Science and Medicine, 65(7),
Strauss, A. (1975). Chronic illness and the quality of life. St. Louis: Mosby.
Tadele, G., Amde, W., & Kloos, H. (2013). Access to treatment, care, support and prevention services. In G. Tadele & H. Kloos (Eds.), Vulnerabilities, impacts and responses to HIV/AIDS in
Sub-Saharan Africa. Basingstoke: Palgrave Macmillan.
Taylor, D., & Bury, M. (2007). Chronic illness, expert patients and care transition. Sociology of
Health and Illness, 29(1), 27–45.
Tung, H., & Mutran, E. (2005). Ethnicity and health disparities among the elderly in Taiwan.
Research on Aging, 27(3), 327–354.
Union of the Physically Impaired Against Segregation (UPIAS). (1976). Fundamental principles
of disability. London: Union of the Physically Impaired Against Segregation.
Wilkinson, R. (2005). The impact of inequality: How to make sick societies healthier. New York:
The New Press.
Wilkinson, R., & Pickett, K. (2009). Income inequality and social dysfunction. Annual Review of
Sociology, 35, 493–511.
Williams, G. (1984). The genesis of chronic illness: Narrative re-construction. Sociology of Health
and Illness, 6(2), 175–200.
Williams, S. (2000). Chronic illness as biographical disruption or biographical disruption as
chronic illness? reflections on a core concept. Sociology of Health and Illness, 22(1), 40–67.
Wilson, S. (2007). ‘When you have children, you’re obliged to live’: Motherhood, chronic illness
and biographical disruption. Sociology of Health and Illness, 29(4), 610–626.
Aging, Dying and Death
Abstract Dying and death are social events. This chapter examines sociological
approaches to analyzing both. It begins by showing the cultural significance of
dying and death through a brief analysis of the death notices of daily newspapers. It
considers the denial of death and sequestration theses which address the visibility/
invisibility of dying and death in contemporary Anglo culture. The chapter moves
into a discussion of the theoretical perspectives on the awareness contexts informing the social process of dying, which are then explored in relation to the hospice
and palliative care movement. A case study of the funeral industry is examined. The
chapter concludes that while all societies and cultures have ways of managing dying
and death, how each society does so tells us much more than simply how and why
people die: the values, beliefs, ceremonies, and work involved in dying and death
reflects the complex social meanings attributed to these fundamental human
Keywords Denial of death and sequestration theses • A good death • Awareness
contexts • Hospice movement • Funeral industry
Dying and death are both social and biological events, and therefore able to be
viewed through a sociological lens. In this chapter we examine how dying and death
is managed in different societies and different time periods. We begin by examining
how dying and death are social events and what this means in terms of the visibility/
invisibility of dying and death in contemporary Anglo culture. Sociological perspectives on the awareness contexts informing the social process of dying are then
explored in relation to the hospice and palliative care movement. A case study of the
funeral industry is used to highlight the sociological concepts discussed in this
chapter. The chapter concludes by examining the similarities and differences in the
practices around dying and death within societies and across societies.
© Springer International Publishing Switzerland 2016
K. Dew et al., Social, Political and Cultural Dimensions of Health,
Aging, Dying and Death
The Social Context of Dying and Death
How societies deal with dying and death tell us much about social life and interaction in these societies. This is immediately apparent when reading the ‘Death
Notices’ in daily newspapers in places as far apart as London, New York, Sydney
and Wellington. Family announcements are as old as journalism itself with the earliest recorded newspaper, the Acta Diurna, published in Rome in Julius Caesar’s
time, carrying news of births, marriages and deaths, engraved on metal boards (de
Lisle 2006). Today, even with the growth of social media and online death notices,
this tradition continues. In many newspapers this column is headed ‘Birth and
Deaths’ and commences with Birth notices, followed by Death notices, and finally
the In Memoriam notices. The Birth Notice marks a person’s entrance into the social
world and the Death Notice marks their exit – but just as the process of being born
commences well before the time of the actual birth so the process of death continues
on after the physical death of a person. Many newspapers include a memoriam column that is a way of remembering in a public manner those who have died.
If we focus on the death notices specifically we will also find many social evaluations within these. For example, if a young child dies this may seem more tragic
than an older person, and quotes like ‘A little angel only lent’ are used to signify the
innocence of a child who has not had the opportunity to develop into an adult with
strengths and weakness incumbent in this status. By noting the age in the death
notice we are given cues as to the appropriateness of the death, and we may feel
differently about an 83 year old person dying after what is portrayed as a long and
full life than a younger person who still seems to have a life to live. Sometimes how
the death occurred is noted – ‘after a long illness’, ‘suddenly, at home’, ‘tragically
from an accident’- and if the death was peaceful. In many society’s today the term
a ‘good death’ has come to be synonymous with a ‘peaceful death’ and the ideal way
to die (Howarth 2007). Due to the cultural construction of a ‘good death’, death
notices do not usually mention explicitly if a death has not been an easy or peaceful
death or may be indicated more by omission, or statements like ‘after a long and
courageous battle with cancer’, which substitute the notion of a peaceful death with
the active battle against it.
The connection between those living and those who have died is also made by
the names and relationships of the people mentioned in the death notice – ‘loved
mother’, ‘dearly loved and cherished husband’, ‘loved sister and sister-in-law’, and
generations can be traced with the listing of children, grandchildren and great
grandchildren. If the person died in a hospice, hospital or rest home those working
in these institutions may be thanked by the family in the death notice, highlighting
the importance of the work involved in end-of-life care to the bereaved families. The
arrangements for who to contact and the funeral usually conclude the death notice.
The funeral itself is a ceremony imbued with complex social and cultural
There are many other social features that could be gleaned by a reader of these
notices – whether the funeral is in a religious setting, for example a Catholic church
The Denial of Death and Sequestration Theses
where the time for the reciting of the Rosary and of the Requiem Mass is listed,
whether it is a burial (interment) or a cremation, whether there is a preferred place
for donations in lieu of flowers, for example, The Cancer Society, The Heart
Foundation, The Epilepsy Society, and if the person’s body is at their home or in the
In this chapter we will first examine some sociological explanations about the
visibility (or invisibility) of death in Western cultures. This is followed by exploring
the different awareness contexts associated with the social processes of dying, in
terms of both the dying person’s experience and how these relate to those around
them. The way dying and death is managed in modern societies is then illustrated
through exploring the hospice movement and a detailed case study of the funeral
The Denial of Death and Sequestration Theses
Newspaper notices and social media announcements make death visible and this
signals one of the major debates within the sociology of dying and death in recent
times. This invisibility/visibility debate is found in what is called the ‘denial of
death’ thesis (Zimmermann and Rodin 2004) and the ‘sequestration thesis’ (Mellor
and Shilling 1993). In 1955 an anthropologist, Geoffrey Gorer (1955), introduced
the idea that talking about death constituted a taboo in the twentieth century. His
article, ‘The pornography of death’ (1955) compared talking about death with talking about sex but he contends that while in twentieth century Anglo societies sex has
become more and more mentionable, death has become more unmentionable. Along
with Gorer, the French historian, Philippe Aries (1981), was pivotal in embedding
this idea of death being denied with his analysis of Western attitudes to death. Today,
many sociologists have questioned the reality of this taboo with Tony Walter (1994):
294 pointing out that within the British context “virtually no Sunday is without at
least one newspaper discussing death, bereavement, hospices or funerals”, and Lynn
Lofland comments that it is somewhat odd that the notion that death is a taboo topic
in America continues to be asserted “in the face of nearly a decade of nonstop talking on the subject” (cited in Zimmermann and Rodin 2004: 123).
However while modern societies might not be death denying there are social
structures in place that ensure that death is managed and contained in a variety of
ways. The sequestration thesis emphasises the temporal, spatial and social containment of death in modern society (Hockey et al. 2010). The temporal containment is
within an age-related cohort of people over 65 years with a lesser presence in the
lives of children, younger adults and even the middle-aged who in many countries
are expected to continue in employment until at least 65 years. Where once the saying ‘three score years and ten’ signalled the expected end of a long life many people
are continuing paid work into their 70s and therefore what constitutes a long life is
continually open to redefinition.
Aging, Dying and Death
It is not just the biological reality of when death occurs that is changing. In
Walter’s 1994 book, The Revival of Death, he showed that dying, funerals, mourning
and afterlife beliefs are continually evolving, and 20 years later he argued that we
find ourselves in new situations in which new preparations for dying, new kinds of
funerals, new ways of handling grief, and new ways of talking about the dead are
being developed (Walter 2014). He suggests that these developments come from talking within our families, and within society at large and through such talk, individuals,
families, and society create and re-create ways to die, to funeralize, and to mourn.
Where the dying, funeralizing and mourning take place is linked to the spatial
sequestration of death which occurs when dying and death is separated off and hidden from everyday life. This sequestering has occurred within hospitals, rest homes,
funeral homes and cemeteries. The medicalization of death has resulted in a shift to
people dying in institutions rather than in their homes (McNamara 2004). In hospitals, Seymour (2001) has highlighted the tension between caring for the living and
the dying. Her study of dying in intensive care revealed the difficulty for staff, relatives and patients when the overarching narrative in an intensive care workplace is
one of cure, making it difficult for people to have what is considered a ‘good death’
in an acute care setting (Seymour 1999).
The idea of what constitutes a ‘good death’ is characterised by a number of features, including dying surrounded by family and friends, at the end of a long and full
life, and with time to put one’s affairs in order. Ideally the person should be in control of the decisions about end-of-life care, and relatively free from pain. Even dying
in a hospice has not escaped the critique that dying is being hidden from public view
and recent attempts to establish hospice as a philosophy of care rather than a physical place to die has been one response to this critique (Howarth 2007). The example
of the hospice movement is used later in the chapter to illustrate the influence of this
notion of a ‘good death’.
Social sequestering occurs with the separation of dying and bereaved people, and
the practitioners who work with and for them, from the living. These practitioners
include hospice staff, coroners, pathologists, funeral directors, bereavement counsellors and psychologists, crematoria staff, and staff of burial grounds. Hockey and
colleagues (Hockey et al. 2010: 224–5) argue convincingly that these temporal, spatial and social domains establish an environment within which life and death come
to be understood, within Western societies.
Historically this sequestering has not always been the case and people were once
very close to those who were dying as they were the carers throughout the whole
process. However in the late twentieth century and twenty-first century families
have increasingly been removed from active participation in the dying and death
process with professionals taking over this role. This professionalization relates to
the entire dying process with palliative care facilities and hospices employing specially trained staff, rather than volunteers, through to the expansion of the funeral
industry. This industry ensures that following death the decisions about disposal of
the body are made with input from funeral directors, sextons and others employed
in the funeral business. But not all agree that death is sequestered with Blauner
(1966) claiming that death is both present and absent in modern society. The
Awareness Contexts and Dying
improved life expectancy in Western societies means that death in the prime of life
is now the exception rather than the rule. In societies where deaths from infectious
diseases were and are still prevalent, death touched and touches everyone’s lives, as
was the case of the ‘black death’ from the plague in fourteenth century Europe and
is the case with the 2014 Ebola epidemic in Africa.
For health practitioners today the first death they encounter may be someone they
are caring for in their professional capacity, rather than a family member. But
despite the growth of the ‘death industry’ the reliance on professionals may be being
challenged. Dickenson (2005)) points out that as the ‘baby boomer’ generation ages
the social milieu, in which decisions about dying and death are now made, includes
both a questioning of professionals and a focus on the autonomy and personal identity of the individual. This has resulted in the development of options like prepaid
funerals and burials and therefore the possibility of much more involvement by
people in the planning of their funeral and body disposal prior to death.
Awareness Contexts and Dying
Over 50 years ago two sociologists, Barney Glaser and Anselm Strauss (1965) conducted a ground-breaking study of the social processes of dying in a hospital setting. They developed from this study a theory of status passage and awareness
among dying patients, their families and hospital staff. In this study they focused on
the consequences of who did and who did not recognise that a person was dying The
four main types of awareness contexts were (1) closed-awareness – where the
patient does not recognise their impending death even though everyone else does;
(2) suspected awareness – where the patient suspects what others know, and attempts
to confirm or invalidate that suspicion; (3) mutual pretence-awareness – where each
party defines the patient as dying but pretends that the others have not done so; and
(4) open awareness – where the patient, family and medical staff are aware that the
patient is dying and act openly toward it.
The open awareness context has come to be seen as the ideal in the situation of
dying from cancer, a leading cause of death during which a patient will be aware
they are dying. As stated above, if a person knows that they are dying they can put
their financial and business affairs in order, they can deal with any ‘unfinished’ matters with friends and family, and they can also participate in the planning of their
own funerals. It also means that all members of the family and health care team can
be open with the person and not feel that they have to be secretive or deceptive. This
move to open awareness dying has developed from a number of sources.
First, patient-centredness has become a broad movement in health care, focussing on the individuality of the patient and rearranging worker relationships in
health care, from a hierarchal paternalistic system to the more egalitarian multidisciplinary team, in theory if not in practice (Kitwood 1997; also, see chapter two). In
part, this can be seen as a strategy for gaining the trust of clients, in a world where
trust in expert systems has become extremely difficult to maintain. Thus, by