How often have you thought about your satisfaction with life? Have you considered the influence of your personal development, social inclusion, interpersonal relationships, or emotional well-being on your quality of life? How do you perceive the quality of life of people with disabilities?

Thinking about your own life, what would it be like if someone woke you up every morning, picked out the clothes you are to wear, made the same breakfast for you and others with whom you cohabitate without consulting you on what you want to eat, carried out the day’s activities according to their schedule and priorities, and taught you what they thought was important for you to learn, only some of which is of interest to you. What if they declined to teach you skills you are interested in because those skills didn’t fit in with their priorities, agenda, and schedule, they claimed “you are not ready to learn them” or “they are too dangerous,” and they restricted your access to going outside and to social outings because they do not think you can be trusted to behave in public? What if you wanted to listen to soundtracks to musicals or go to museums that focus on your interests but you were not permitted to do so? What if you want to have an intimate partner but your caretakers won’t let you because they do not think it is appropriate for someone like you to have sexual relationships? What kind of quality of life would you have? 

Quality of life is a consideration for all humans, including people with disabilities. For this reason, we – the members of the ABAI Practice Board – generated a blog to discuss the conceptual framework of quality of life, its evolution, and impact within the context of disability.

Defining Quality of Life

The World Health Organization (WHO) defines quality of life as “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns” (World Health Organization and Division of Mental Health and Prevention of Substance Abuse, 1997, p. 1). Quality of life has also been defined as one’s satisfaction with their well-being across life domains (Schalock et al., 2011) or one’s ability to function successfully and live independently in their environment (Brown & Brown, 2005).

Conceptual Framework

One of the conceptual models used to describe the concept of quality of life is the Schalock and Verdugo model (Schalock & Verdugo, 2002). According to this conceptual model, four principles guide the conceptualization of quality of life.

§  Principle 1: Multidimensional construct

Quality of life is a multidimensional construct consisting of eight core domains and indicators. The eight domains include material well-being, physical well-being, emotional well-being, rights, social inclusion, interpersonal relationships, self-determination, and personal development. Each domain is operationally defined by multiple indicators. For example, the rights domain consists of indicators such as dignity, equality, freedom, access to education, opportunities, and due process.

§  Principle 2: Universal construct

Quality of life consists of the same domains and indicators for all people regardless of their race, ethnicity, culture, socio-economic status, or disability.  In other words, quality of life is relevant to everyone regardless of geographical location. However, the domains and one’s perception of quality of life may vary based on their values and cultural norms. For example, people in one culture may perceive material well-being as very important, whereas individuals in another country may value social inclusion and interpersonal relationships more than other domains.

§  Principle 3: Subjective and objective components

When assessing one’s quality of life it is critical to use both subjective measures and objective measures. Subjective measures consist of asking questions related to quality-of-life domains, such as opportunities to make choices, to attend to leisure and recreational activities, to obtain a job aligned with their interests, or to live where and with whom they choose. Objective measures consist of collecting data by conducting direct observations during daily activities in one’s natural environment to determine whether they make choices, are included in activities, interact with others, or possess the behaviors needed to function effectively during typical activities.

§  Principle 4: Self-determination and social inclusion

Self-determination refers to one’s ability to control their own life by acting as a causal agent (Wehmeyer, 2005). Social inclusion refers to one’s valued membership in their community or their participation in academic, social, leisure, and employment activities (Keith & Schalock, 2016). In general, people who can advocate for themselves, make choices and decisions regarding their personal and professional life, and are active members of their community have a better quality of life.  

Quality of Life and Disability

What does quality of life mean for a person with a disability? Do different quality-of-life conceptualizations and measurement principles apply to people with disabilities than typical people?

For people with disabilities, the construct of quality of life emerged in the 1960s and 1970s during the “quality revolution” (i.e., a movement characterized by an emphasis on the quality of services and supports provided to people with disabilities; Schalock, 2000). One of the principles that led to the adoption of the concept of quality of life for people with disabilities during the “quality revolution” was the normalization principle (Nirje, 1969). The normalization principle emphasized the importance of (a) normal life for all people, including people with disabilities, (b) access to the same opportunities that allow one to a good and fulfilling life (i.e., equality), and (c) freedom, dignity, and respect within one’s community and society (i.e., human rights).

For a long time, the idea that the quality of life of people with disabilities should be conceptualized and measured differently than the quality of life of typical people dominated the field of education. However, research on quality of life over the last 30 years has suggested that the concept of quality of life is the same for all people regardless of whether they have a disability. The only difference is that when we think about people with disabilities and the eight domains that comprise quality of life, we need to think about the supports and resources we can provide for them to function more independently. For example, how can we assist people with disabilities to develop and maintain friendships? What supports do we need to provide so they assume an active role in their communities and be socially included? How can we help them enhance their self-determination and be a causal agent in their life?

Impact of Quality of Life

Over time, the concept of quality of life influenced the field of education in several ways. First, it changed how we define disability (Schalock, 2000). For example, in the 1960s, people with disabilities were viewed as sub-humans, morons, and idiots and their disabilities were emphasized. Many believed that people with disabilities should not be allowed to live at all or in the same community with typical people, should be placed in institutions, or should be “fixed.”  However, after the concept of quality of life emerged in the field of education, we embraced an ecological model of disability in which we consider a person’s ecological environment. In this model, the emphasis is placed on the environment and not on a person’s disability. For example, instead of labeling a person as depressed or noncompliant, a better approach is to offer them activities aligned with their preferences and interests and, consequently, increase their motivation to participate in academic, leisure, or recreational activities.

Second, the concept of quality of life changed how we related to people with disabilities. One of the goals of the ecological model of disability is to provide people with disabilities the supports that would enhance their ability to function as independently as possible and reduce the discrepancy between their abilities and the environmental requirements. For example, when a person cannot communicate orally, we have to provide them the support they need to communicate and teach them the skills that allow them to be effective communicators and make decisions regarding their life rather than making decisions and choices for them.

Third, the concept of quality of life has shaped the language of the field of education by embracing terms such as equity, equality, human rights, social inclusion, and self-determination. Furthermore, terms like interpersonal relationships, valued memberships, active participation, community inclusion are often used when designing educational and treatment programs for people with disabilities. Finally, the personal advancement and goals of people with disabilities are reflected in terms such as competitive employment, independent living, and transition to adulthood.

Next Steps…

The conceptualization and measurement of quality of life has continued to evolve over the last 40 years. It is important to note that quality of life and its application to people with disabilities is in its infancy and many questions are still unanswered. For example, how can we effectively promote quality of life for people with disabilities? Do existing measures accurately evaluate the quality of life of people with various disabilities? How can we use quality of life as an outcome measure to guide treatment selection and implementation? Until more research is conducted to address the aspects listed previously and others not mentioned in this blog, it is important to remember that a person with disabilities wants the same things in life that most of us want and has the right to live a happy and fulfilling life.

Resources

Brown, R. I., & Brown, I. (2005). The application of quality of life. Journal of Intellectual Disability Research, 49(10), 718–727. https://doi.org/10.1111/j.1365-2788.2005.00740.x

Keith, K. D., & Schalock, R. L. (2016). People speaking for themselves. In R. L. Schalock & K. D. Keith (Eds.), Cross-cultural quality of life: Enhancing the lives of people with intellectual disabilities (pp. 35–49). American Association on Intellectual and Developmental Disabilities.

Nirje, B. (1969). The normalization principle and its human management implications. In R. Kugel & W. Wolfensberger (Eds.), Changing patterns in residential services for the mentally retarded (pp. 179–195). President’s Commission on Mental Retardation.

Schalock, R. L. (2000). Three decades of quality of life. Focus on Autism and Other Developmental Disabilities, 15(2), 116–127. https://doi.org/10.1177/108835760001500207

Schalock, R. L., Keith, K. D., Verdugo, M. A., & Gomez, L. E. (2011). Quality of life model development and use in the field of intellectual disability. In R. Kober (Ed.), Enhancing the quality of life of people with intellectual disabilities: From theory to practice. Springer.

Schalock, R. L., & Verdugo, M. A. (2002). Quality of life for human service practitioners. American Association on Mental Retardation.

Wehmeyer, M. L. (2005). Self-determination and individuals with severe disabilities: Reexamining meanings and misinterpretations. Research and Practice for Persons with Severe Disabilities, 30, 113–120. https://doi.org/10.2511/rpsd.30.3.113

World Health Organization and Division of Mental Health and Prevention of Substance Abuse (1997). WHOQOL: Measuring quality of life. World Health Organization.

Video

Dr. Robert Schalock – What is Quality of Life?

Link: https://www.youtube.com/watch?v=1PorQtVq1Bo&t=449s

Book

Schalock, R. L., & Keith, K. D. (2016). Cross-cultural quality of life: Enhancing the lives of people with intellectual disabilities (2nd ed.). American Association on Intellectual and Developmental Disabilities.