During my first week of medical school, we watched a video documenting the life and death of a child with severe spina bifida. Her parents had been aware of her prognosis long before birth but did not terminate the pregnancy; they cared for her until her death, when she was 8. Speaking years afterward, they regretted nothing. They saw her as a gift from God, to be valued and loved as much as their other children.
I distinctly remember sitting in the lecture hall and thinking, “You people are out of your minds.” I’d grown up with a sibling who had severe autism. His disability had never felt like a gift. Instead, it ruined birthdays, strained family gatherings and doubled my parents’ expectations of me. I’d learned to force a beatific smile when told how much patience I must have learned, but until that film, I’d never realized some people weren’t faking their smiles: for some people, disability was a source of joy.
I’ve grown and changed since then, but the way we talk about disabilities in the news has not.
The catastrophic tone in recent microcephaly depictions is only the latest inaccurate and overwhelmingly negative representation of the disability experience. Microcephaly is a symptom of a variety of genetic, infectious, and toxic disorders, and is diagnosed when an infant’s head circumference is below average. Of all babies with microcephaly, 15 percent go on to have typical intelligence, while the remainder may have a range of mental and physical disabilities, depending on the cause.
The news media has churned out stories like the recent CNN dispatch in which a Brazilian physician says, unchallenged, affected newborns “will require special attention their entire lives. It’s an emotional stress that can’t be imagined.”
Disability activists say such florid coverage is bad for parents, people with disabilities and the rest of us, too.
Journalists are responsible for transcending assumptions, says Kristin Gilger, Director of the National Center on Disability and Journalism. In the case of microcephaly, that means exploring the spectrum of associated anomalies. The disease has been presented as inevitably debilitating to the extent that the United Nations has demanded affected countries reconsider abortion bans — when in fact, almost 30 percent of children with microcephaly in one study were able to attend mainstream schools.
Telling balanced stories that show a range of experiences and relationships for people with disabilities is a step toward changing public attitudes toward disability.
KEREN LANDMAN is a physician trained in internal medicine, pediatrics and infectious diseases. She wrote this essay as part of The Dallas Morning News’ partnership with the Munk School of Global Affairs at the University of Toronto, where she is a fellow. Email: klandman@gmail.com