BLOGSPOTTER
Making a mass-media splash once required an assist from gatekeepers named Winfrey, King, Kroft and Sawyer. Now people who won’t even reveal their own names can engage the world with a single blog post — if they say something important or controversial enough.
That’s what the parents of a 9-year-old Seattle-area girl identified only as Ashley found out last week when they published an online account of treatments and procedures their daughter underwent to limit her physical growth to that of an adolescent.
Ashley’s disabilities, as her parents described them at ashleytreatment.spaces.live.com, are so severe that she “cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk. She is tube-fed and depends on her caregivers in every way.” In addition, “She has been at the same level of cognitive and mental developmental ability since about three months of age.”
The “Ashley Treatment,” undertaken by physicians at Seattle Children’s Hospital over more than two years, included a hysterectomy, appendectomy, breast-bud removal and high-dose estrogen therapy. Ashley’s doctors wrote up the case for the October issue of Archives of Pediatrics & Adolescent Medicine.
But it was the parents’ Jan. 2 MSN blog post that sparked a global discussion.
The Los Angeles Times published a story on the controversial treatment the next day. Accounts in the Seattle Post-Intelligencer, the London Guardian and Time magazine soon followed. As of last Thursday, Google News offered links to more than 1,100 stories about Ashley.
In a follow-up post affirming their unwillingness to speak with reporters, her parents said the site received more than a million hits in its first 48 hours. Although hits are a more inexact measurement tool than page views, the initial post detailing Ashley’s treatment likely has been read hundreds of thousands of times.
It also has sparked protests from disability-rights activists and medical ethicists — as well as more than 2,500 e-mails of support, Ashley’s parents wrote on Jan. 7.
The debate has centered on the following questions: Were the treatments provided solely with Ashley’s health and well-being in mind, or was her growth stunted in part to make life easier on her parents? (They insisted their comfort was not a factor.) In any case, was it ethical for doctors to perform the medically unnecessary procedures?
Beyond those thorny issues, here’s a query better suited to this column: What moved Ashley’s parents to post such a detailed account of their daughter’s procedures? The blog’s stated purpose is “to inform and help other families” facing similar circumstances. But is that the whole answer?
The parents said the manifesto was not intended as a defense of their actions. Perhaps that’s true. Before declining a phone interview with the Los Angeles Times, Ashley’s father told reporter Sam Howe Verhovek, “People think it must have been a horribly difficult decision. It really wasn’t.”
That breezy attitude isn’t evident on the blog, however. “A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver,” the parents wrote.
Yet stunting Ashley’s growth wasn’t necessary for mom and dad to include her in their lives. And it doesn’t require a value judgment to conclude that parents who wanted a “smaller, lighter body that is … easier to be moved around” must have factored their workload into the equation.
After all, any editor would change that last passage’s passive construction to “easier for us to move around.” Ashley’s treatment might or might not be ethically and morally defensible. But it’s not credible for her parents to insist caregiver convenience played no role in their decision.
Like an old-fashioned diary, the parents’ blog may help them explore the deeper truths of their actions.
By making it public, they’re inviting the rest of the world to do so, too.
For links to mentioned sites, visit www.spokesmanreview.com/blogs/spot. Contact Frank Sennett at (509) 744-5700 or altsourceradio@yahoo.com.