By Peggy O'Mara
This article was the opening speech delivered by Peggy O'Mara for the 4th International Public Conference on Vaccination put on by the National Vaccine Information Center in Washington DC on October 2, 2009. Visit Peggy's blog for more information about the conference events.
Ever since Barbara asked me to talk on “The New Health Journalism: Challenging the Status Quo” I have been struck by the irony of this title. What we call “new” journalism is actually a return to the old, to the very roots of journalism. This return to the roots of journalism is inspired by personal healthcare experiences, which demonstrates that recent encroachments on liberty have cut close to the bone. And, finally, wouldn’t it be nice to live in a society from which we didn’t feel we had to protect ourselves?
As new parents, we believe that society will take care of us, has our best interests at heart, and will protect us. I want new parents to believe this, but healthcare policy in the US is focused on controlling rather than preventing disease. It is fear-based, interventionist and compromised by economic considerations. At this time in history, assuming that society will protect you can be a dangerous belief.
It was new parents who founded Mothering in the mountains of southern Colorado in 1976. They were natural living pioneers who went “back to the land.” Many of us tried to grow our own food, can fruits and vegetables, keep chickens and goats, and heat with wood. This was a time when one could only find children’s cotton pajamas at a second hand store because new pajamas for children were all required by law to be made with flame-retardants, later found to be toxic. There were no natural personal care products, no packaged herbal teas or organic produce in grocery stores.
Natural living pioneers preferred to use peppermint oil or willow bark instead of aspirin for a headache, and were particularly cautious about the use of antibiotics. We often chose not to circumcise and usually breastfed. When vaccinations were suggested for our babies, we had questions.
I was one of these natural living pioneers. At the initial doctor’s visit after the birth of my first child in 1974, I told the doctor that I had some questions about vaccines. She mocked me and would not even entertain my questions. I took my questions next to a biologist friend who answered them patiently, but I soon learned that I had to be discreet about asking questions about vaccines. It wasn’t socially acceptable. Nonetheless, I continued to have more questions than answers.
Mothering magazine was born out of these and other questions that natural parents had in the late seventies. One of the most popular topics in the letters to the editor section then as well as now is the topic of vaccinations. We published our first full-length article, “A Mother Researches Immunization” by Roxanne Bank in 1980.
That same year, I became owner of the magazine and I was on top of the world, but even I didn’t realize how lucky I really was. About that time, I talked to a young man from China who literally could not comprehend that someone like myself, an independent citizen, could own a magazine. Most of us know that China censors the information available to its citizens, but few of us realize how rare a free press really is. In 2009, Freedom House conducted their annual survey of 195 countries and territories and found that just 36% had a free press. In terms of population, only 17% of the world’s inhabitants live in countries that enjoy a free press. The 2009 report shows the seventh straight year of decline in global media freedom. Western Europe boasts the world’s highest level of press freedom.
What is a free press? In the reign of Henry VIII (1509-1547), the political significance of the art of printing began to be appreciated. The King not only limited the privilege of keeping a press, he also required presses to be inspected and licensed. This was, as you know, one of the tyrannies that led eventually to the American Revolution.
Freedom of press in the US constitution is not really a right unto itself, however, but an exemption from impediment. Article I of the constitution states, “Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press.”
Now, freedom of the press does not mean that we can say anything at all that we like. That is license, not freedom. Freedom is mediated by the freedoms of others. We cannot speak or write a false statement of fact about another person, for example, or could be guilty of slander or libel.
Freedom of press has become particularly important during the last 15 years because of the erosion of this freedom that has resulted from the Telecommunications Act of 1996. This act relaxed ownership restrictions so that one company could own up to eight media stations in a single market.
According to Advertising Age, by September 1997 in each of the fifty largest US markets, three companies controlled over 50% of the radio ad revenues. Today, the media is dominated by just 10 companies: General Electric, AT&T, Sony, Liberty Media, Vivendi Universal, AOL/Time Warner/ Walt Disney, Viacom, Bertelsmann, and News Corporation.
When Barbara Loe Fisher is asked to be a guest on NBC, for example, and she is beautifully articulate as always but her position is marginalized by the host, I can’t help but wonder if the objectivity of the network is compromised by the fact that GE, which owns NBC, also makes MRI machines, CT scanners, x-ray and ultrasound machines; owns health, accident and long-term-care insurance as well as stock in healthcare companies here and abroad.
Over the last 12 years, the deterioration of independent journalism in the US has contributed to the decline of our democracy. In his seminal pamphlet, “Corporate Media and the Threat to Democracy,” Robert McChesney, Communications Professor at the University of Illinois, says “Participatory self-government or democracy works best when at least three criteria are met.” These criteria are:
“First, it helps when there are not significant disparities in economic wealth and property ownership across society. Such disparities undermine the ability of citizens to act as equals.”
“Second, it helps when there is a sense of community and a notion that an individual’s well being is determined to no small extent by the community’s wellbeing. Democratic political culture cannot exist if everyone is simply out to advance narrowly defined self-interests.”
“Third, democracy requires that there be an effective system of political communication, broadly construed, that informs and engages the citizenry, drawing people meaningfully into the polity.” As James Madison said, “A popular government without popular information, or the means of acquiring it, is but a prologue to a farce or a tragedy, or perhaps, both.”
Clearly, we can see that none of these criteria exist in the US today when looking through the lenses of the mass media, but the decline of independent print journalism and the simultaneous explosion of the internet over the last ten years has given rise to a new health journalism, a citizen journalism that is resurrecting the original intent of free press.
When we first starting covering the issue of vaccinations in Mothering, we were asking legitimate questions raised by the community of natural living pioneers. I never expected that this issue would become of such wide concern though I did anticipate its political significance when I sub-titled our vaccine anthology, “The Issue of our Times.”
But, that was before Congressman Burton’s hearings of the late nineties and early 21st century. That was before 1997 when the EPA set a reference dose for mercury in biologics. That was before May 9, 1999 when the American Academy of Pediatrics (AAP) and the US Public Health Service called for the elimination of mercury in childhood vaccines.
The back sliding that the AAP, the CDC and US health officials have done since 1999 has done more to erode the public’s confidence in vaccines than anything else. It is not the stories of autistic children or the pending cases in “Vaccine Court,” that confuse parents, but rather the contradictory stand of the government and the pediatricians on the issue of mercury in vaccines.
Several years ago, I spoke to a doctor at the AAP to ask why they had failed to caution parents or pregnant women about the thimerosal in the then newly recommended flu vaccine. He told me that they could not discredit thimerosal because vaccines containing it were being exported to third world countries. But, what about the children and pregnant women in these countries? Once again, medical zeal trumps safety.
It’s concern for children that is at the root of the new health journalism. The new health journalists are participant observers; it is their own lives on which they are reporting. Some have medical backgrounds to help them in their search to find out what is wrong with their children; others become scientists along the way.
When we publish articles about vaccines and autism, I hear from grateful mothers who call crying to tell me that they now have something they can show to their relatives, to all the people who doubt them, who think that they are crazy. I know that these mothers are not crazy. I know that they are telling the truth. I know that they are telling the truth because by the time a mother has reached the conclusion that her child has autism because of vaccines she has considered and thrown out every other conceivable explanation. She does not want to come to this conclusion. She has dragged herself kicking and screaming to this conclusion. If a mother has decided that vaccines caused her child’s autistic symptoms, then there is no question but that she is right because she so badly wants not to be.
The mother always knows.
It is these heartbroken mothers and the fathers who have gotten on the web and told each other what is going on, compared symptoms, put the pieces together. It is their experience that nullifies the status quo.
In print, we’ve published hundreds of articles and letters on vaccines. In the early days of the magazine, this content was about reconciling vaccines with a natural living philosophy. By the mid-nineties, it became evident to me that parents were feeling oppressed on all sides. A mom sat crying in my office and told me that she had no idea what her own point of view was regarding vaccines. She felt pressured by her family to vaccinate and pressured by her health practitioner not to. I decided to do a special issue for parents like her.
We asked five doctors, each of different health philosophies, to answer the same questions about vaccines and we published their answers along with charts comparing complications from diseases with complications from vaccines in a spring 1996 special edition. As a result of this edition, I was invited to speak on Vaccines and Risk Communication at the Institutes of Medicine that fall, where I testified that I thought those who questioned vaccines were in a very small minority.
By the end of the nineties and the early two thousands, this had changed. When the AAP called for the elimination of mercury in vaccines in 1999 everyone took notice. And, it was during the late nineties that we began to hear in earnest from the community of families whose children are autistic because of vaccines and to publish their stories.
We were the first magazine to publish articles on hopeful treatments for children with vaccine-induced autism. Our most recent article, “Do Unvaccinated Children Put Vaccinated Children at Risk?” brought together many different points of view and will hopefully help to defuse this volatile red herring.
Over the years we’ve published articles by such luminaries as Robert Mendelsohn, Dick Moskowitz, Harold Butram, Bernie Rimland, Amy Lansky, Lyn Redwood, Liz Birt, Stephanie Cave, Boyd Haley, Lysa Sykes, David Kirby, Bob Sears, and Barbara Loe Fischer.
With 140,000 members, our discussion community on mothering.com is the largest discussion community for parents on the entire web. Our vaccine forum has 24,000 threads and 263,000 posts. We have sub-forums on chicken pox, diphtheria, pertussis & Tetanus, Hepatitis, HIB and Reynar, Measles, Mumps & Rubella, Polio, Smallpox, Dealing with Your Doctor, Personal Experiences, Selective/Delayed Vaccines, Newborn testing & Medication, Immunity, Know Your Rights, Resources, How Do you Decide? I’m Not Vaccinating, and a sub-forum called Everything Else.
Before the Internet there was no way for so many like-minded people to so easily exchange information about an issue. Unlike industrial media, which takes special skill, special equipment and financial resources, digital media requires no special knowledge or equipment, is immediate and can be quickly updated.
Yochai (yoh HI) Benchler, author of the top textbook on the Internet, The Wealth of Networks says “It seems passé’ today to speak of ‘the Internet revolution’ …But it should not be. The change brought about by the networked information environment is deep…. It goes to the very foundations of how liberal markets and liberal democracies have coevolved for almost two centuries.”
According to Benchler, we are shifting from a mass mediated public sphere to a networked public sphere. “I suggest,” he says, “that the networked public sphere enables many more individuals to communicate their observations and their viewpoints to many others, and to do so in a way that cannot be controlled by media owners and is not as easily corruptible by money as were mass media.”
No better example of this exists than the proliferation of vaccine information on the Internet. It takes me hours now to do the research that it took me weeks to do before the Internet. Because of the networked nature of the web, when an important observation is made within the online vaccine community, it gets picked up quickly by other sites, eventually by bigger sites and before you know it, its on Huff Post and then there’s an interview on Larry King. According to Christopher Harper of Temple University, “Until recently, only a small number of people owned a news organization. Today, digital tools have empowered many people to own a news organization.”
Barbara asked me if I have suffered for challenging the status quo. My job as a mother is to challenge the status quo. If I am lucky enough to have a child who is perfect and one of a kind, it is not my job to make my child be like everyone else. It is not my job to follow the current fashions, but to forge my own way, to develop my own personal ethic of parenting. And, as a journalist, my job is also to challenge the status quo. It is not the media giants that need protection. It is the common man. As Finley Peter Dunne said 100 years ago, “the job of a newspaper is to comfort the afflicted and to afflict the comfortable.”
Because I own Mothering and am both the editor and publisher, I don’t have to answer to anyone and seldom have to negotiate my point of view among my staff. But, we have suffered financially because of our advocacy and our standards. Independent magazines are not the norm in the US. Most, if not all, of our competitors are owned by companies that publish multiple titles and therefore have greater economies of scale. They are often ad driven and seldom have a strong point of view.
Because of our ad standards, we do not take advantage of the ad dollars spent in other parenting magazines by formula companies and pharmaceutical manufacturers. We don’t accept ads for these products. These kinds of standards are almost unheard of in the magazine industry. Our mission at Mothering magazine and mothering.com is not to sell products to parents though we hope that our advertising is useful. Our mission is to help parents make informed choices.
This wave of patient rights, informed consent and new health journalism is about “we the people.” We-all of You-have brought the issue of vaccine safety to center stage in the US and it is only a matter of time before this new health journalism becomes the status quo. Do not be deceived by the backlash. The last gasp of tyranny is always the loudest.
Society changes slowly. At first, a challenging idea is ignored. Then it is ridiculed. Finally, it is attacked. Attack is the stage before assimilation. We have already created the new status quo, and are just waiting for the old order to crumble. No wonder the orthodoxy is mad. They know we’re right.