Monday, July 07, 2014

Who determines Quality of Life?

Eugenics and Quality of Life

Many women with disabilities identify themselves as feminists, but reject a pro-choice position on abortion, arguing that abortion is too often used as a form of eugenics against disability: this position is difficult for many non-disabled feminists to understand or accept. -- disability theologian, Deborah Beth Creamer (in Disability and Christian Theology, pg 17)

In 2002, as new parents of a daughter with Down Syndrome, we were informed that since our quality of life would be impacted by her potentially low quality life, we had the option of walking away from the hospital without her.

Have things changed much?

A century ago, Americans determined that since persons with disabilities obviously had a poor quality of life, the compassionate option was to remove them from society through a system of eugenic practices (institutionalization, forced sterilization, marriage laws).  While the most egregious practices ended by 1930 the question on quality of life persisted, particularly within the medical profession.

A recent fascinating five-part webcomic, illustrated by a mother encountering potential cystic fibrosis in their child, reminded me of this point. The doctors (using a medical model of disability) informs them CF is a chronic, fatal disease, leading to a poor quality of life (part 2).  The family thinks through options of terminating the pregnancy, following the doctors lead - worried that they would be contributing to pain if they brought the fetus to term (part 3).  They rejoice when they find out their child does not have CF, or Down Syndrome, or any other genetic difference (part 4).  The concluding panel extols the virtues of new tests, able to be performed in the first trimester, allowing families to make the decision to choose early termination (part 5).

Before I make potentially critical comments, I understand the pain, emotion, and the sense of loss of control that all families and parents encounter walking through these stages.  I do not fault anyone for wondering, exploring, even cursing God during these times (read the Psalms).

Yet, as a father, I can assure you that my quality of life since our daughter entered our lives is higher than it was before, even though I have less money, older cars, shorter vacations, and sleepless nights.

I grow concerned that "quality of life" of a person with a disability is often mistranslated as the "quality of life's convenience" for persons without a disability. A person with a disability becomes objectivized and loses their own agency. The temporarily able bodied person perceives that his own quality of life may decline if he has to enter into a mutual relationship with a person or child with a disability. As many studies have shown, the opposite is in fact true. Furthermore, I would posit that the quality of life for the whole human race would increase if we all entered into vulnerable relationships with those who are experiencing limited embodiment a few years before we are ultimately destined as well.

Human life is wondrous, multi-faceted mystery, shaped by a million different factors yet united by the imprint of God.  Quality of life has less to do with our current limited embodiment as it does with our mutual love and relationships with family, friends, and if not them, our Savior.   The metrics that do exist on measuring family quality of life recognize the influence of these factors. It definitely is not determined by money, status, or temporary ability. Quality of life can then truly only be determined by each person with a disability in conversation with their Creator.