The Problematic Nature of "Quality of Life"

A couple of weeks ago in the online Introduction to Disability Studies class I am teaching this semester, I brought up the notion of "quality of life". This is a highly problematic term that, I think, is too often blindly accepted as a valid construct. As I wrote to my class, "quality of life" is a construct that has come to be enshrined in disability policy and administrative procedures, but what does it really mean? What is quality of life and is it the same for everyone? When was the last time you were asked about your quality of life? How did you respond?

In Medicaid and other programs QoL is measured by surveys that frequently ask you to rate your quality of life on a scale of 1-10; this is exactly the same as the scale that doctors and hospitals use to assess your level of pain. Now, this is an interesting parallel to consider....

When was the last time you were in the hospital and had a doctor or a nurse ask you to rate your level of pain? It’s hard! When I broke my arm last year and went to the emergency room, the admissions desk asked me to rate my pain. I actually had to think about it. What is 10? What is 0? What is the difference between 5 & 6? I had to tell the admissions clerk that honestly I didn’t know how to rate my pain, I’d never broken my arm before. I knew that it hurt, but I obviously wasn’t dying; but does a 10 mean I’m on the verge of death? It’s all very ambiguous.

Now think about how you would rank your quality of life. Is your quality of life today a 6 or an 8? Is your 6, the same as someone else’s 6? What does it mean if I’m a 9 today and a 2 tomorrow? Does that mean that my average quality of life is only a 5.5? These are all important issues to think of when we discuss issues of quality of life.

Let me give you a practical example. When I was working with Medicaid in Alaska we began developing a Quality Assurance plan to ensure that people were getting the services they needed in a timely and cost effective manner. One of the tools in this QA plan was a Quality of Life standardized interview protocol. In our tests of this protocol we reviewed responses from urban, rural and bush communities. Interestingly we found that people with disabilities living in urban areas, with apartments or homes, regular and reliable support staff, and many social, educational, and recreational opportunities indicated that they had a lower “quality of life” than individuals in bush communities.

Now, if you’ve been to bush communities in Alaska, then you know that many houses are cobbled together from bits and pieces of whatever can be found. There is rarely indoor plumbing and often many homes are without electricity. Often homes below the Arctic Circle are heated with wood, and above the Arctic Circle where there are few, if any, trees homes are heated with outrageously expensive heating oil. In general, the living conditions are very rough and in some place could be considered primitive. There are even government and NGO reports that have classified living conditions in bush Alaska as “Third World”. But, getting back to my point, individuals with disabilities who lived in these communities, on average, reported a higher quality of life than individuals in urban areas.

So what does that mean? Should we send all people with disabilities to live in rural Alaska and then they’ll be happy? No, obviously not. But it does require us to question what constitutes “quality of life” and if it is even a construct that can be accurately and reliably measured.

While thinking about this issue for my class I stumbled across this video from the Southwest Conference on Disability that addresses this issue of “quality of life”. Check it out:

• Quality of Life Video: http://www.youtube.com/watch?v=cPRpGI1fRC0