By Deborah Z. Altschuler
“With the exception of an occasional accolade for all the hard work that goes into being an activist, I generally find myself resenting the term.”
To paraphrase an old proverb, Citizen Activists will never disappoint you if you observe two rules: 1. Find out what they are; 2. Expect them to be just that. Many of us come naturally to advocacy in our role as parents. The activist in public health, however, can face a peculiar set of problems.
Regarding Pediculosis, the consensus among contemporary physicians is that head lice are essentially a nuisance, leaving treatment protocols to the pharmaceutical manufacturers who market pediculicides for direct application to human skin. Although it can be a positive force, the pharmaceutical industry is not a proper guardian of children’s health.
This is where the activist evolves into educator, support system and collector of personal accounts – sometimes appalling – of families and individuals who have suffered from unnecessary, unsuccessful or excessive chemical treatments. The activist must do what disinterested experts will not do: investigate the origin, nature, methods and limits of knowledge in Pediculosis and its management. The activist must also seek allies – often the school nurses, occasionally the press, and sometimes (in cases where a child has suffered grievous harm), the lawyers – when there is no mechanism in place to exchange insights, experience and research.
With the exception of an occasional accolade for all the hard work that goes into being an activist, I generally find myself resenting the term. Perhaps it is because of what other think an activist should be. Activists are do-gooders working “on the outside” – people whose commitment to their cause keeps them from pursuing a “real job”. Here are some common perceptions:
- Activists have information – Academics possess knowledge
- Activists have points of view – Scientists have hypotheses
- Activists have anecdotal evidence – Researchers have reports to the literature
- Activists provide outreach – Specialists give consultations
No matter what the cause, such perceptions can alienate the activist as a key player in providing society with what it requires in the way of a unified effort to deliver the truth – on Pediculosis-related issues or on other important matters affecting the public’s health.
Meanwhile, families must be enabled to make informed decisions and seek safer alternatives before using potentially harmful but readily available chemicals for lice and scabies. The age-old disease of Pediculosis isn’t going away. It is the activist’s particular challenge to educate the public in spite of the relative indifference to this issue on the part of the professional communities the public turns to for advice. Ultimately, the task will be accomplished when we successfully teach the “experts” what the “experts” need to be taught. That it’s not about lice – it’s about kids.
Deborah Z. Altschuler
National Pediculosis Association