Lies, damned lies and statistics


McGill researcher exposes discrimination in "Quality of Life" rankings

Does disability equal suffering? Can life be worse than death? These are just two of the touchy questions the World Bank and the World Health Organization (WHO) have attempted to answer through a "quality of life" ranking a McGill anthropology researcher says holds serious implications for all of us.

In the August 2000 issue of the journal Social Science and Medicine, PhD candidate Melanie Rock questions the Disability-Adjusted Life Year (DALY) measurement system endorsed by the WHO and the World Bank as an indicator of economic and social development. Rock observes that many of the assumptions underlying the DALY could mislead decision-makers because, according to her:

  • the DALY assumes that the more developed a society, the fewer people with disabilities there will be, yet longer life spans in industrialized countries can increase the likelihood of disabilities in seniors;
  • the DALY assumes that economic and social development is a function of individual bodies, rather than of how social networks extend human abilities and human lives through creative use of resources;
  • the DALY assumes that all people with disabilities are fundamentally unhappy and unhealthy, to the point that the DALY was designed and subsequently updated without input from people with disabilities;
  • the DALY assumes that people with disabilities are less productive than "normal" people, and that the more "severe" the case, the lower the productivity;
  • the DALY implies that medical interventions to "normalize" people with disabilities are worthwhile investments, unlike work or home assistance programs for the disabled.

To illustrate how the DALY applies to real people, Rock refers to the controversial Robert Latimer case that’s currently before Canada’s Supreme Court for the second time. The case has been in legal limbo since 1993, following Latimer’s confession that he killed his daughter Tracy out of compassion because she was suffering from cerebral palsy. "Measured in terms of the DALY," Rock writes, "Tracy Latimer was living in a state worse than death."

Latimer’s main defence relies on several assumptions found in the DALY, Rock observes, which has caused great concern among disability activists. Given that discrimination and violence against people with disabilities are pervasive yet invisible, the researcher continues, these concerns must be seriously addressed. "Disability activists argue that the concern about quality of life can sanitize inequality and violence against people with disabilities," she says.

Although Canada’s Charter of Rights and Freedoms guarantees equal rights for the disabled, Rock says, public debate over the Latimer controversy demonstrates that many Canadians associate disability with suffering, a view apparently shared by the World Bank and the WHO. When "quality of life" becomes a yardstick for governments, whose values determine how to best ease suffering? At what economic and social cost? Rather than providing enlightened guidance, the rows upon rows of figures, arid formulas and tidy graphs produced for the World Bank and WHO may reinforce cultural stereotypes about human development. "The Latimer controversy and similar cases have forced some of these stereotypes into the public eye," the researcher says, "yet they are deeply rooted and need weeding out."