Sunday, June 24, 2007

FULL DISCLOSURE VS PERSONAL PRIVACY - Todd Stroger misses an opportunity to educate the public

FULL DISCLOSURE VS PERSONAL PRIVACY - Todd Stroger misses an opportunity to educate the public
By Bonnie Miller Rubin
Copyright © 2007, Chicago Tribune
Published June 24, 2007

To tell or not to tell? That is the question -- especially last week, when news of Todd Stroger's prostate cancer became public.

In this tell-all age, Stroger's lack of candor sparked a heated debate on how people cope with a serious illness, and just how much information they owe their employers. In this case, that means the citizens of Cook County.

Are public servants obligated to divulge sensitive health information, or are they entitled to the same right to privacy as the rest of us? Are the standards different for a local politician than for someone whose finger is poised on the nuclear button? Do we admire total transparency (see Edwards, Elizabeth) or do we long for the stiff-upper-lip stoicism of a Jacqueline Kennedy?

My interest wasn't just as a voter, but as a cancer survivor. I wasn't running for office, but my diagnosis in the 1970s collided with the start of a dream job. The questions of not just what to tell -- but when and to whom -- were almost as vexing as the illness itself.

I started out trying to keep things quiet -- unsuccessfully. I'm a wear-my-heart-on-my-sleeve person, and ultimately I simply had to manage my non-Hodgkin's lymphoma the same way. Pouring out my story to everyone -- including strangers on airplanes -- became my coping mechanism, a way of shining a light on the boogeyman in the closet. Besides, I already had enough anxiety without adding the burden of secrecy.

Openness not only became my pre-emptive strike, but it allowed me to bask in people's inherent goodness. The casseroles, funny cards and office gossip provided a much-needed antidote to doctors, procedures and the grind of radiation. No amount of control would have been worth swapping for that deep well of support.

Still, in a way that I couldn't comprehend in my 20s, I now understand the skittishness in outing oneself. The fears of exposing one's vulnerabilities are not unfounded in a society that worships youth and robust health. Employers already marginalize the old and the sick. No need to hand them more ammunition. For all our talk of compassion, the ashen face of chemotherapy is still at odds with the workplace -- especially in today's harsh business climate.

Judging by the buzz around the water cooler and on talk radio concerning Stroger's illness, the public seems split on the dilemma of disclosure.

This latest news -- coming on the heels of the "total deceit" surrounding the severity of John Stroger's stroke -- is a fatal erosion of trust, said one friend.

"You get one pass," said the friend, who voted for Todd Stroger last March despite the shenanigans over his father's health. "And the Strogers have officially used them up."

Another Chicagoan -- no Stroger fan -- was surprisingly tolerant, viewing the revelation simply as business as usual, not as more evidence of subterfuge. "These are politicians, not role models," he said with a shrug.

Experts, too, agree that coming clean on chronic conditions is not clear-cut. Any discussion about Stroger's situation cannot be separated from the fact that he knew of his condition while running for office, said Dr. Lainie Ross, a pediatrician and researcher at the University of Chicago's MacLean Center for Clinical Medical Ethics.

"I have a right to vote on real information," Ross said. "And if you knew of this before, then you've deceived me."

But she also said the public's right to know must be balanced with the politician's right to privacy as a patient. "There needs to be some give and take. ... The decision about how much information should be disclosed shouldn't be left totally in the hands of voters nor to the politicians and their advisers and handlers, but rather, there should be public discourse and some shared decision-making."

Though John F. Kennedy's back problems and Franklin D. Roosevelt's polio were kept out of view, attitudes changed in the 1970s, partly as a product of Watergate. But more than three decades later, Americans are still conflicted on the subject, said John Pitney, a political scientist at Claremont McKenna College in California. "We simply want our leaders to be like us -- but better than us."

There's no doubt, however, that the bigger the office, the greater the obligation for disclosure. "Our very survival may depend on the president's good judgment," Pitney explained. "Is there anything you don't want to know about someone who's asking you for the power to blow up the world?"

This point was driven home dramatically in the 1980s when we were treated to a diagram of Ronald Reagan's bowels, he said. But when Jimmy Carter's hemorrhoids led off the evening news? "Well, maybe that was something we just didn't need to know."

I feel the same way about Todd Stroger, who now joins the 10.5 million other Americans who have faced down cancer.

Stroger had a golden opportunity to show courage, the way Betty Ford did first with breast cancer, then again with addictions; the way Magic Johnson did with HIV; the way Mike Wallace did with clinical depression. He could have enlightened others on the importance of early detection, chipping away at the stubborn stigma that still surrounds these issues. He could have even made a dent in our cynicism and won over some skeptics. But he didn't.

That's his call. And that's his loss.



Post a Comment

<< Home