Christine Rosen, writing in the Wall Street Journal, memorializes Harriet McBryde Johnson as someone who made society look at disability as a natural part of the human experience. Johnson, she says, demonstrated that disability transcends the convenient categories that often stymie political discourse: secular or religious, liberal or conservative. Johnson held up a mirror to a society whose acceptance of disability wanes as its scientific powers to eliminate disability grow.

As an example, Rosen cites the “rapid near-disappearance of people with Down syndrome.”

As a culture, we have made what Amy Laura Hall of Duke University Divinity School calls a “democratic calculus of worth” regarding Down Syndrome. And that calculus has resulted in a society hostile to people who refuse to make the culturally acceptable choice of ridding themselves of a disabled child before she is born.

… if choice and prevention produce a culture that equates disability with irresponsible parenting decisions, then the homage we pay to accommodation will prove hollow indeed. And as the population ages, and more Americans find themselves living with disabilities, questions about worth at the end of life will become even more pressing. Thanks to people such as Harriet Johnson, we have not yet reached the point where accommodation has given way to neglect or elimination. But we would do well to respect what Ms. Johnson’s own life so ably demonstrated: People with disabilities, she said, “have something the world needs.”

Christine Rosen is senior editor of The New Atlantis: A Journal of Technology & Society, and the author of Preaching Eugenics: Religious Leaders and the American Eugenics Movement.

This entry was posted on Friday, June 27th, 2008 at 3:41 am and is filed under Down syndrome, NOT2BEMISSED, end of life, eugenics, genetics, muscular dystrophy, obits, prenatal diagnosis, public attitudes, public policy, quality of life, stereotypes, stigma. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.  Email This Post