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Two sides of a coin - advocacy and activism

Two sides of a coin - advocacy and activism

Picture of Kate  Benson

Painting a picture with words is one of the staples of journalism. In a post last month, I blogged about the potential hazards of sensationalizing the actions of a minority of patients using in essence a "single" source. In the British press one researcher compared the activists to animal rights activists and he and a colleague said they would not do anymore research as a result. But, as science writer Carl Zimmer blogged, the catalog of harassment presented was made up mainly of obnoxious emails and Mr. Zimmer added that "no one's bombed a lab."

I wondered if the reaction to the articles and the way they were reported would have been different had these patients been portrayed as similar to AIDS activists and ACT UP instead.

Consensus that death threats are beyond the pale, no matter how rare or likely to be carried out, is easy to obtain. But after that it is more complicated.

The question could just as easily be whether all activists and advocates should be painted with the same brush.

It is very easy to portray the news in broad strokes of white hats and black hats, but in doing so do we lose the "meaningful context" Bill Kovach and Tom Rosenthiel consider a critical element in the reporting of accurate and reliable facts? If, as these journalists say, journalism is a form of cartography creating a map for citizens to navigate society then it makes sense that inflating events for sensation, neglecting others, stereotyping or being disproportionately negative all make a less reliable map.

The balance might be found in community psychology. Moving back across the pond, in a paper published by Elsevier last week, a CFS expert and psychologist, writes about "Small Wins Matter in Advocacy Movements: Giving Voice to Patients."The abstract states, "In this article, the various players are delineated in a story of a contested illness and patient advocacy, played out within the corridors of federal power..." Provocative, but is there substance?

In it he cites the example of a national non-profit patient advocacy organization who publicly questioned financial improprieties at the federal level for the second time in ten years. The GAO backed the first finding in the late 1990s, but the second time the agency charged with wasting public funds began a counter investigation of the non-profit.

Although the author says the charges against the non-profit were cleared, he added that being investigated by a federal agency can have an intimidating effect on any non-profit organization.

No death threats, but the intimidation factor can clearly swing both ways.

As for advocacy, the author concluded that ultimately such an advocacy approach can result in significant scientific and policy gains, and changes in medical and public perception of an illness.

So, bottom line, can death threats and law suits both intimidate and have a chilling effect on research and legitimate advocacy? And can advocacy and activism work toward the better good as well? Does answering these questions require meaningful context?

Painting with broad strokes, particularly when deadlines loom and learning the back story takes both awareness and time, is the easy part. But, is it good journalism?

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