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Disability and Health

Chapter · January 2014

DOI: 10.1007/978-94-007-0753-5_739

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Darshini R Ayton Narelle Warren

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 Disability and Health

Affiliation

Darshini Ayton, Narelle Warren and Lenore Manderson

School of Psychology and Psychiatry

Faculty of Medicine, Nursing and Health Sciences

Monash University

900 Dandenong Road

Caulfield East, Victoria, 3165

Australia

Darshini.Ayton@monash.edu

Lenore.Manderson@monash.edu

Narelle.Warren@monash.edu

Synonyms

Disability: Affliction, Ailment, Defect, Impairment, Incapacity, Infirmity, Handicap, Malady

Health: Wellbeing, Wellness

Definitions

Health: “a state of complete physical, mental, and social well-being and not merely the absence of
disease or infirmity” (World Health Organization 1948)

Disability is a complex phenomena that results from interactions between health conditions and
contextual factors, both external environmental (including, but not limited to, social norms and
expectations, physical or built environment, legal and social structures) and internal personal factors
(including demographic characteristics, personal experiences, personality and disposition, and
individual influences on the perception of disability). Disability involves dysfunction at one or more
of three levels – a) the body or body part, b) the whole person, c) the whole person within social
context – in one or more of three ways: impairments (in body structure or function), activity
limitations or difficulties, and restricted participation in multiple life spheres (World Health
Organization. 2002)
Description

Health

The concept of health has evolved over centuries and is influenced by cultural, social, political,
psychological and economic forces. It extends beyond the presence of biomedical and biological
states (illnesses). Health has medical, social, economic, spiritual and other components, and these are
shaped by age, sex, social class, scientific and technological developments, and the environment
(Larson 1999; Keleher, MacDougall et al. 2007). Over time, many different models of health have
been proposed and utilized. These reflect: the changing health profiles of populations including the
epidemiological transition, in which chronic conditions have become more prevalent (Omran 1971);
evolving characteristics of disease; and different emerging disciplines which have challenged notions
of health and its determinants (Van Leeuwen, Waltner-Toews et al. 1999).

The medical model of health, where health is defined as the absence of disease or disability which
prevent or hinder an individual from participating in life activities (Crichton 1990; Larson 1999), is
the most widely acknowledged model. Social models of health, in contrast, recognize social
determinants of health and the interplay of the natural and social environments in maintaining good
health, exposure to risk factors, disease susceptibility, prognosis, access to treatment, and likelihood
of death (Marmot, Friel et al. 2008; Solar and Irwin 2010). Experiences of health or illness are
profoundly social, influencing personal and social identities, social participation, stigmatization and
social exclusion, capacity to mobilize resources, and access to diagnosis, treatment, support and care
(Allotey, Reidpath et al. 2003; Manderson and Smith-Morris 2010). These in turn are shaped by
available infrastructure and resources.

The social and economic context of health, and the relevance of mental, emotional, spiritual and
social as well as physical factors in determining health status and wellbeing, is reflected in the
definition of health provided by the World Health Organization (WHO) in its earliest documents.
From this foundational idea of health, WHO has attended to the prerequisites for health, factors that
encourage a healthy society such as “peace, shelter, education, social security, social relations, food,
income, the empowerment of women, a stable eco-system, sustainable resource use, social justice,
respect for human rights and equity” (World Health Organization 1997, para 5). These prerequisites
highlight the convergence of biological, psychological and social factors in shaping the transmission
of disease, its treatment and development, and its outcomes (a biopsychosocial model; Engel 1977)).

In subsequent work, researchers have illustrated that disease, wellbeing and death are both social and
biological (Marmot, Friel et al. 2008; Morrall 2009; Solar and Irwin 2010). Diseases are transmitted
through the interactions of people with their environment and changes to the environment, as in the
short term occurs with economic development, and in the longer term through climate change (World
Health Organization 2012). Interactions between humans, vector and environment shape local
epidemiologies of disease. For example, while schistosomiasis transmission is a water-borne infection
of trematode larvae, with snails as the vector, the risk of infection reflects how people use water in
their everyday life: for personal hygiene, domestic duties, recreation, agriculture and animal
husbandry (Watts, Khallaayoune et al. 1998; Huang and Manderson 2005). Similarly, influenza,
various rotaviruses and dengue become epidemics across continents not because of the presence of
pathogens alone, but because poor infrastructure, poor governance and overcrowding create the
preconditions for infection, and the pathogens – viruses in two cases, the mosquito vector in the third -
are transmitted effectively because of frequent air travel.

Health conditions impact on people’s lives across all domains, and quality of life studies seek to
capture this. Health-related quality of life measures vary, with a wide range of instruments available.
These vary in their purpose, with most assessing morbidity and mortality (usually reported in terms of
rates); the impact of an illness on behaviors, practices and activities of daily life; self-perceptions
about health status and its effects; the functional impacts of illness (often an objective measure);
and/or satisfaction with life. Such validated measures offer subjective, and to a lesser extent objective,
assessments of people’s life in the context of health, illness and the social environment for the
purposes of comparing within and between conditions and groups. Condition- and population-specific
quality of life instruments allow for targeted investigation into the impacts of particular diseases on a
person’s life.

Disability

People with physical or mental disability historically have been seen as functionally atypical, and so
are also classified as ‘diseased’ in the medical model of health (Amundson 1992). In this model,
disability is understood as due to functional limitations arising from a medical condition, which
impact an individual’s ability to participate in his or her expected social roles (Leiter 2007). However,
this model does not adequately allow for disability as a consequence of chronic conditions (Gray and
Hendershot 2000), the leading cause of disablement globally (World Health Organization 2005). As a
result, the International Classification of Impairments, Disabilities and Handicaps (ICIDH) was
developed in 1980 for trial purposes (Gray and Hendershot 2000) and, with the International
Classification of Disease (ICD), facilitates classification of the full extent of disease and disease
consequences, thus assisting in evaluating health care outcomes (Gray and Hendershot 2000). The
constructs of the ICIDH are included below in Figure 1.

DISEASE or IMPAIRMENT DISABILITY HANDICAP

DISORDER
(intrinsic situation) (exteriorized) (objectified) (socialized)
 Figure 1: Dimensions of the consequences of disease (ICIDH) (De Kleijn-De Vrankrijker 2003)

The three central constructs – impairment, disability and handicap – refer to different experiences of
disease consequences (Gray and Hendershot 2000). ‘Impairment’ encapsulates body abnormalities in
organ or system function; ‘disabilities’ highlight the impact of impairment in relation to the
individual’s ability to function and undertake activities, and ‘handicap’ relates to the resulting
disadvantages experienced by an individual (Gray and Hendershot 2000). Criticism of the ICIDH
related to the relative lack of attention to the role of society in producing disability led to the
development of the International Classification of Functioning, Disability and Health (ICF); this was
released by the World Health Assembly in 2001 (World Health Organization. 2002; Udea and Okawa
2003). The ICF avoids terms which hold negative connotations, but it also emphasizes the role of
environmental factors which impact on the outcomes of impairment and determine the participation of
people with various conditions (De Kleijn-De Vrankrijker 2003). The ICF describes health and
health-related states from the perspective of the individual and society in relation to activities and
participation (Figure 2).

Health condition
(disorder or disease)

Body Functions & Structures Activities Participation

Environment Personal
al Factors Factors

Figure 2 Interactions between the components of ICF (De Kleijn-De Vrankrijker 2003)

Quality of life studies related to disability is an emergent field of research, although questions of
accuracy and translation of assessment persist. Measures of health are used to assess burden, extent
and impact of disability, particularly in the context of chronic disease; identify strategic and priority
areas; and assess the impact and effectiveness of health interventions. These measures include
HRQoL (Health Related Quality of Life) instruments, DALY (Disability Adjusted Life Years),
QALY (Quality Adjusted Life Years) and YLD (Years of Life lost to Disability). However, many of
these do not capture the nuances of culture and specifics of setting. Allotey et al. (2003) demonstrated
that while measures indicate little differences between countries, the experience of paraplegia in
Australia is vastly different to that in Cameroon in terms of independence, mobility, self-care and
social participation. A capabilities approach (Sen 1987; Nussbaum 2005) offers a way to redress these
issues by differentiating between capability and function, and by emphasizing social justice in quality
of life assessments. In this, quality of life considers how people live their lives with the resources –
economic, financial, socio-cultural, psychological, environmental, and interpersonal – available to
them. As a result, research on quality of life in the context of disability can recognize the universality
of disability, so ensuring “that every human being can experience a decrement in health and thereby
experience some disability” (World Health Organization, 2002:3).

Allotey, P., D. Reidpath, et al. (2003). "The DALY, context and the determinants of the severity of
disease: an exploratory comparison of paraplegia in Australia and Cameroon." Soc Sci Med 57(5):
949-58.
This paper summarises the findings of an empirical investigation of some of the technical
and social assumptions on which the disability adjusted life year (DALY) is based. The
objectives of the study were to examine the notion that the burden of disease is broadly
similar without regard to country, environment, gender or socio-economic status and to
develop detailed descriptions of the experiences of the burden of disease as they related to
these contextual factors. The study was a multi-factorial exploratory study employing
qualitative and quantitative techniques to obtain data on the effects of country
(development), environment (urban versus rural), gender and socio-economic status on
people with paraplegia. The data provided an extensive and detailed compilation of context
rich descriptions of living with paraplegia. Striking features of the data were the differences
between countries with respect to the impact of the health conditions on functioning and
highlight a context in which paraplegia of like clinical severity can be fatal in one
environment and not in another. While there has been some focus on the control of social
determinants of disease, there has been little work on the social determinants of the
severity of disease. The underlying assumptions of the DALY, which ignore context in the
assessment of the burden of disease, risk exacerbating inequalities by undervaluing the
burden of disease in less-developed countries. There is a need to continue to subject the
development of indicators to rigorous debate to determine a balance between the
assumption of a global "average social milieu" and the treatment of each individual as
belonging to their own context in the assessment of population health in order for indicators
to be meaningful cross-culturally.

Amundson, R. (1992). "Disability, handicap, and the environment." Journal of Social Philosophy
23(1): 105-19.

Crichton, A. (1990). Slowly taking control? Australian governments and health care provision 1788-
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De Kleijn-De Vrankrijker, M. W. (2003). "The long way from the International Classification of
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This article reviews the important concepts that led to the development of the International
Classification of Impairments, Disabilities, and Handicaps (ICIDH), explicates the
International Classification of Functioning and Disability (ICIDH-2), and discusses implications
of the ICIDH-2 as a conceptual framework for outcome measures. The original ICIDH opened
the door to include factors outside the traditional classification boundaries of disease,
illness, and functional limitations that have framed the concept of disability. The new factors
in the ICIDH-2 include a dimension for participation in social activities and a listing of
environmental factors that are important for understanding the complexity of disability. The
ICIDH-2 offers an opportunity for building a consensus on the terms used to describe
disability and on the scope of factors to include in studying disability.

Huang, Y. and L. Manderson (2005). "The social and economical context and determinants of
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Leiter, V. (2007). ""Nobody's just normal, you know": the social creation of developmental
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socially created within a US public program called Early Intervention (EI). In doing so, the
paper analyses and links the social creation of early childhood disability as a category at both
the macro-level level and at the micro-level. The analysis is based on qualitative interview
data from 31 parents and 19 professions involved in EI programs in Massachusetts. At the
macro-level, the paper addresses how federal legislation and state regulations establish the
boundary between normalcy and disability. At the micro-level, it analyses adults' social
creation of developmental disability, measured as impairment. The paper also investigates
the impairment categories that are produced by these processes, exposing the kinds of early
childhood developmental delays that have been legislated as worthy of public intervention
and discusses some implications of the disability determination process.

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schistosomiasis transmission in an irrigated area of Morocco. This setting, with many
scattered water contact sites, many activities carried out at these sites, and the small
number of people involved, was not appropriate for a conventional water contact study
based on the observation of water contact sites, such as had been carried out in the Nile
delta. The Moroccan study utilizes three related concepts: the household, time geography,
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underlying the daily mobility pattern of individual households, and seen as part of a larger
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