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CHAPTER 1
Introducing Quality of Life
Getting started: An orientation
What is this book about?
This book is about the conceptualization of quality of life and how to use it in practical ways. It does this through examples, models and principles that have been developed over the past 15 years or so. It is about how to understand what quality of life means to people in general, what it means to each individual person, and how individuals can be helped to improve their quality of life. It focuses particularly on people with disabilities, since we want to highlight disability, but the reader will soon see that the concepts contained within quality of life and the strategies for improving quality of life apply to all people. Thus, this book is especially about quality of life for people with disabilities and their families, but, significantly, it is also about quality of life for everyone.
Who is this book for?
This book is for practitioners and student practitioners â in a variety of fields â who are charged with helping others to improve their quality of life. Who do we have in mind? The list is quite long, but definitely includes people in the areas of social services, health and education. It includes frontline workers of all types, occupational therapists, nurses, rehabilitation practitioners, and counsellors. It is relevant to social workers, health and social policy makers, teachers and educational authorities. Quality of life should be taken into account by medical practitioners who work in such areas as paediatrics, family medicine and mental health. It is also relevant to the work of psychologists. In addition, people whose work sometimes touches the lives of people with disabilities â such as those who work in the legal system, government, urban planning, public services, and both public and private business â could usefully apply the principles described in this book. Quality of life is especially important, though, for practitioners who work in communities, those who frequently advise individual persons with disabilities and their families, and those who provide intervention, support and care in a variety of settings that relate to individual and family well-being.
This is not just a book for professionals, however. Many people with disabilities who do not have an academic background may find descriptions within these covers that will enable them to take greater action for improving their own lives. Family members, and friends too, will be able to understand and apply the quality of life ideas to help improve life for their family member or friend with a disability, for themselves and for their families. This book is about using a quality of life approach in everyday living and in day-to-day professional work. For this reason, it is intentionally written in language that is commonly used in everyday life.
Quality of life until now
Quality of life is a term that has been used for several decades, but it has come into its own in the last 15 years. A great deal has been written about it, and a considerable amount of research has been carried out concerning aspects of peopleâs lives and their environments that are associated with quality of life. Two books that cover a wide range of issues related to quality of life are by Renwick, Brown and Nagler (1996) and Romney, Brown and Fry (1994).
Quality of life has been studied and written about in a variety of fields, such as sociology, psychology and medicine. For people with disabilities, more specific work has been carried out in rehabilitation, nursing and medical care, health promotion and, to a lesser degree, education. Much of what we know today about quality of life for individuals with disabilities, however, has been developed within the field of intellectual disability. This work has yielded very rich information that is highly applicable to people with other disabilities, and indeed to all people with or without disabilities. In fact, we believe that the work in quality of life â no matter where it came from â is relevant to all people right across the disability field and in the wider society. Further, we argue that the use of quality of life reduces the need to label because it is concerned with the particular things individuals do as they live their own lives in their homes and communities. Thus, quality of life is relevant to everyone, everywhere.
Where do we find this information? Quality of life is the topic of numerous books that have been specifically written to help us understand this term better, and a large and growing number of articles are scattered throughout journals in a variety of academic areas. When this literature is looked at as a whole, it can seem confusing. Certainly, it clearly demonstrates the twists and turns that are characteristic of a new and evolving idea. There has been considerable effort recently, however, to bring together the fundamental principles and ideas that have been agreed upon within the quality of life literature, a process that has been given impetus by some helpful critical appraisals. There are also a growing number of websites that provide information about a wide variety of quality of life projects, and these can be very helpful to practitioners who are looking for how others attempt to help improve quality of life. A search of âquality of lifeâ and âquality of life and disabilityâ on the Internet brings up a vast array of relevant materials.
Still, many of the concepts and strategies contained within quality of life work are not as simple and easy to understand as practitioners might like. For this reason, it is our aim in this book to explain them in such a way that practitioners can understand them readily, and be in a better position to make sense of the quality of life literature that is available. Having said this, it must be recognized that some researchers and practitioners in the field of disabilities have raised concerns about the concept (for examples of concerns expressed, see Hatton 1998; Taylor 1994; Wolfensberger 1994).
Understanding what we mean by quality of life
Quality of life is a term that is recognized and used today in a variety of ways. When we talk about positive quality of life, we are talking about having a life that is very meaningful to individuals and that provides them with resources. Many people, when first thinking about it quickly, assume this means living in a certain house, driving a car that suits their image, and travelling to exotic corners of the world. But, on second thought, they realize it means much more than this. It can mean having an interesting and enjoyable job to go to, feeling safe, confident and happy with yourself, feeling close to those people who share your life, having fun, and living life according to the beliefs and values that are important. It also means having the freedom to choose to do the things you wish, and having a richness of opportunities to choose from. These are things that are important to almost all people everywhere in the world. For this reason, they provide an effective way of describing the quality of life of groups of people in general. Thus, it is possible to think of quality of life in general terms for all people by focusing on those aspects of human life that almost all people share.
When you think of your own life, though, you will quickly realize that it is different from that of other people and that there are many things you do not share with others. The things that are the most meaningful to you and that add the most richness to your life are often a little different from the things that are meaningful and add richness to the life of your best friend. For many people in the world, having food and water, basic shelter or family support may be the most important things. For others, spiritual needs may be especially important. For you, it may be something different again. To make this more complicated still, what is important to each individual changes over time. This complexity among individuals, though troublesome for some scientists and practitioners, is one of the fascinating things about quality of life: the unique features that make us interesting as individuals result in quality of life taking different forms. Indeed, it would be a very dull world if people were all the same, or if quality of life meant precisely the same thing to each one of us. Moreover, such uniqueness also provides each of us with a means to develop a positive and unique self-image. When we recognize and value our uniqueness, we become empowered to develop the self-image that is most suited to our own characteristics, environment and values. This is essential to positive, individual quality of life.
This is a particularly important point for practitioners to understand, for when they work to help other people improve their lives, it can never be assumed that what is important to the practitioner has the same importance for other people. People have their own ideas about what is most meaningful for them, what fits their self-images best, and what adds richness to their lives. Assisting people to exercise choices that reflect these ideas empowers them to improve their own lives and to develop positive self-images that reflect their own needs, wishes and values.
To help make the point more clearly it may be worth trying this short exercise. You will probably find it interesting, and perhaps a little surprising!
Meaningful and rich aspects of my life
Take a few minutes to think of five things that are particularly meaningful to you and add richness to your life. Ask a family member or friend to do the same thing, thinking of things in relation to his or her life. Then share your lists.
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Understanding three types of quality of life
Now that you have an idea of what we mean by quality of life, let us go back briefly to look at how other people have used the term, because it is important to understand that it has been used by different people to describe different things. Some different âtypesâ of quality of life have been developed and used, not one of which is either right or wrong. Nor is one necessarily better than the others. Rather, each type has its own purposes and its own perspective on peopleâs lives. We will briefly describe three of the most commonly used types: quality of life of large populations; health-related quality of life; and quality of life in improving individualsâ wh...
