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6 Case Study – Disability in India: Interweaving Legislative, Economic and Cultural Change

6 Case Study – Disability in India: Interweaving Legislative, Economic and Cultural Change

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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;

Friedner 2013).

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.



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Chapter 11

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,

DOI 10.1007/978-3-319-31508-9_11





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

funeral home.

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

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6 Case Study – Disability in India: Interweaving Legislative, Economic and Cultural Change

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