Quality of Life

[Guest guest]

Featured Article: Quality of Life

Copyright 2007, Kathie Snow, www.disabilityisnatural.com

Quality of life—it’s discussed in medical settings, debated by scientists

and non-scientists, and litigated in courtrooms. And for many children and

adults with disabilities, a lifetime of treatments, interventions, and

services are devoted to improving a person’s quality of life. But who

defines quality of life, and is there a definition embraced by all?

The dominant power of the medical community has, it seems, determined a

“good” quality of life is related to functional skills: breathing, walking,

talking, hearing, seeing, eating, behaving, eating, eliminating waste, and

so forth, in the “normal” fashion. (And the dictates of the medical

community heavily influence human services, education, and the general

public, and then become conventional wisdom.) So if one doesn’t have

“normal” functional skills, a “poor” quality of life is assumed.

Thankfully, people with disabilities routinely demonstrate that the absence

of functional skills has little or nothing to do with quality of life!

For decades before his untimely death in 1995, Ed , the father of the

Independent Living Movement, taught thousands the real meaning of quality of

life. After contracting polio as a young teenager, Ed could move only two

fingers on his left hand—he couldn’t even breathe on his own. So he needed a

power wheelchair (which he controlled with those two fingers), a portable

ventilator attached to his chair, and assistance to do everything except

speak! If Ed was seated next to you at dinner, he might invite you to pull

the breathing tube out of his mouth, pop a bite of food in, and then put the

life-giving breathing tube back in.

According to conventional wisdom, Ed’s quality of life would be considered

“poor.” But was it? He traveled the world to share the Independent Living

philosophy, won a MacArthur “genius” award, and did so much more! He lived a

fuller, richer, busier life than many people who can walk, breathe, feed

themselves, wipe their own bottoms, and perform other “normal” functional

activities. Ed personally demonstrated and professionally educated others

that being in control of your own destiny represents the real meaning of

quality of life. He helped others learn that the only person qualified to

judge quality of life is the person living that life. Only Ed—no

others—could measure his quality of life!

Ed was in charge—to decide the who, what, where, when, and how of his

life—thanks to assistive technology, supports, and accommodations. With

these “tools,” he had the power and freedom to make his own choices. Sadly,

many people do not have the tools which would enable them to be in control

of their lives. Many don’t have a communication device, card system, the

ability to sign, or other method to effectively share their wants, needs, or

feelings. Similarly, some people are denied the mobility devices they need.

And still others attempt to exert control over their lives, but are

routinely ignored or even punished for their efforts!

Consider this other lesson about quality of life: on your deathbed, as you’

re reviewing your life for the last time, will you think, “I’m so glad I

learned how to walk [or talk or read at grade level or perform any other

functional skill]?” Or will you be thinking, “I’m so grateful for my

wonderful family and friends and all the great times we spent together...”

These thoughts—about relationships and experiences—reflect the measuring

stick of real quality of life!

and Chuck, the parents of 10-year-old Charlie, who has Down syndrome,

were told to move to a lower altitude. This, the physician said, would

improve their son’s quality of life: perhaps Charlie would no longer need to

sleep with oxygen and he might live a few years longer than expected. In a

panic, and Chuck spent many weekends over the next year traveling

around the country looking for a better place. But after all the frantic

activity, they decided to stay put, in a community where Charlie was

included in school and in community activities, surrounded by friends who

loved him. These relationships and experiences truly represented a great

quality of life for Charlie. The physician’s “prediction” that Charlie might

live a few years longer paled in comparison to the richness of Charlie’s

life in the here and now.

Twenty years ago, I was told my baby son with cerebral palsy needed

therapies and specialized interventions to improve his quality of life. It

didn’t take long to realize, however, that these services interfered with

the real quality of life for and our entire family! The hectic

schedule of therapies and interventions stole precious moments—days, weeks,

and years—of family time, as well as time for to simply be a baby,

and more. I was a slow learner then and, sheeplike, I followed the orders of

experts until 6-year-old tearfully expressed his feelings: “Going

to therapy doesn’t make me feel like a regular person.” That was the end of

his therapy career. We found more natural ways of providing the assistance

he needed in inclusive settings, which automatically improved his real

quality of life.

Ed and others with disabilities taught me that didn’t have

to walk to have a good life, but he did need independent mobility (a power

wheelchair) and a good education so he could be employed as an adult. Thus,

pulling him out of the general ed classroom for PT and OT would have been

counterproductive, since he’d then miss academics. Similarly, a person doesn

’t need to talk to have a good life, but she does need effective

communication (a device, cards, etc.) and a good education. And a “good”

education may or may not include reading, for example. Some people may never

be able to read, but that doesn’t mean they can’t learn—using books on tape,

computers, DVDs, experiential activities, and more. Children with

disabilities also need to learn how to live in the Real World—not the

“special” environments of Disability World—if we expect them to be

successful in the Real World as adults.

Trying to improve a person’s quality of life (as defined by functional

skills) can have profoundly negative effects on the person’s real quality of

life (being in control of your life, relationships, and experiences). While

parents chase cures and treatments for a child with a disability, family

relationships, ordinary (and precious) experiences, sanity, and contentment

evaporate. When educators insist on “helping” a child in a segregated

special ed resource room, what opportunities is the child missing in a

general ed classroom? And when providers require adults with disabilities to

spend years in “readiness” activities, real quality of life—a Real

Life—remains out of reach.

It seems that the usual therapies, interventions, and services provided to

“improve” quality of life (functional skills) are focused on the future. In

my family’s situation, therapists worked diligently on many “get ready”

skills that were intended to help my son sit up, walk, feed himself, etc.,

at some point in the future. But very little attention was paid to what was

important for him (or our family) at that moment in time! The same is true

for millions of children and adults with disabilities. While we focus on

tomorrow, next month, or next year, or on the next prerequisite skill, today

slips away—opportunities, joys, and experiences are lost—“getting ready” for

tomorrow.

Is your quality of life determined primarily by what your body or brain can

do (now or in the future), or is it a result of the choices you make day in

and day out, the experiences you have from morning until night, and the

family and friends who surround you at home, work, and play? What will it

take to ensure children and adults with disabilities have the same

opportunities to control their own destinies, including the ordinary

experiences and relationships needed to create their own quality of life?

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The strongest principle of growth lies in human choice.

Eliot

“For your own good” is a persuasive argument that will eventually make man

agree to his own destruction.

Janet Frame

Copyright 2007 Kathie Snow; www.disabilityisnatural.com; all rights

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