Academic journal article International Public Health Journal

Inclusion and Quality of Life: Are We There Yet?

Academic journal article International Public Health Journal

Inclusion and Quality of Life: Are We There Yet?

Article excerpt

No man is an island, entire of itself; Every man is a piece of the continent, A part of the main.

John Donne, Meditation XV11

Introduction

Quality of life has become a ubiquitous phenomenon in the field of intellectual and developmental disabilities (hereafter intellectual disabilities) since the groundbreaking work of scholars such as Roy Brown, David Goode and Bob Schalock who first wrote on the concept in the late 1980s. It is extremely useful to understand the history of the concept, which probably had its origins in the Aristotelian expression eudaimonia that Aristotle referred to as an objective degree of satisfaction of your needs and living a life of virtue. Early Greek philosophers rigorously debated the relative merits of objective and subjective aspects of the good life. In more modern times, Thorndike (1) was one of the first scientists to study the quality of life on American cities in the 1930s, specifically in terms of objective characteristics. However, most contemporary writers agree quality of life consists of both objective and subjective dimensions. The concept of "well-being" is suggested by some as a preferred concept to "quality of life" (2).

Various approaches to the concept, including the measurement of health outcomes, have been adopted in the health field; including intensive work by the World Health Organization (3). To some extent, researchers in the field of intellectual and developmental disabilities have not entered into the broader debates on the usefulness of the phenomenon (4,5).

Again, we need to embrace wider world contexts in our debates concerning issues which appear highly pertinent to our field of inquiry. It is suggested that we need to explore concepts in our field through the prism of the broader historical, philosophical, moral, economic, social and political contexts within which all people exist. We are in danger at times of being too introspective in our consideration of research, policy and service issues relating to people with disabilities. Hence, this paper explores issues related to social inclusion and quality of life for people with intellectual disabilities in the context of forces in the wider community. Without this broader perspective I am afraid these concepts run the danger of becoming mere rhetoric, largely ignored outside of the disability environment.

Self-image and quality of life

I recount a worrying phenomenon in the context of the London Paralympic Games held in 2012. There were glowing reports in the world media on the remarkable achievements of athletes with disabilities and corporate sponsors were anxious to bask in the glow of those achievements. However, when questioned as to whether they would invite these athletes to become involved in sponsoring their products, as is the case with famous sportspeople without disabilities, there was an ominous silence. Apparently, they were not prepared to risk the possibility of the negative attitudes the general population still holds towards people with disabilities affecting their product image.

It is the image people with intellectual disabilities may have of themselves, however, that I want to address. My proposition is that without a sound image of themselves, this population would find it difficult to experience the feelings of well-being or quality of life. Despite having suggested that we need to address issues in the disability field in wider contexts, there is a case for analyzing the concept of quality of life through the lens of the epistemology of disability (6); in particular from a symbolic-interactionist viewpoint (symbolic interactionism, a sociological theory, that suggests the way we learn to interpret and give meaning to the world is through our interactions with others).

The negative stereotypes and attitudes toward people with intellectual disabilities are pervasive (7,8) and impact upon the development of their self-image. In his discussion of the phenomenon of labeling, Burbach (9) suggested that people with a disability are in a double-bind situation. …

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