St. Paul Saga II: Craig Westover Responds · 2005-07-29 15:06

Craig Westover submitted an extensive reply to St. Paul Saga Thursday night, and reproduced our exchange on his own blog. I encourage everyone who has read St. Paul Saga to take the time to read Mr. Westover’s perspective on the incidents I described there, as well as all the comments.

What follows are a few relatively brief observations, followed by my more detailed thoughts on several points made by Mr. Westover in his response, and in the additional commentary he offered on his own blog.

Let me say first that I am grateful that Mr. Westover took the time to prepare a thoughtful response. I am glad to know that he disapproves of “Kennedy-like tactics”; so do I.

It seems that I pity the banished evangelist Mr. Ziegeweid less than Mr. Westover does. “Hate mail” may not come as much of a shock in some territories; I am not so relaxed about the potential impact of “hate phone calls” on stay-at-home moms, or anyone else, for that matter. As someone who is also a parent but not inclined to call my ideological opponents at home, neither am I easily persuaded that those who succumb to the temptation to make such calls should be offered little impetus to consider the real motives that might lead to such invasive behavior — motives that might have little to do with the person subjected to harassment. As many parents of autistic spectrum offspring learn, sometimes a person needs a cooling-off period or a time-out in order to figure out what good might come from “behaving himself.”

I will also clarify what appears to be a simple misunderstanding:

My comment about email to the letters to the editor specifically was an alternative for those upset by Randall’s letter — it was not a call to action, nor was it phrased as the call to action you imply.

I used the phrase “call to action” to describe Mr. Zeigeweid’s first post, then continued to describe events in chronological order. “Call to action” was not meant to characterize any event beyond that first one.

Parents & Proselytizers

Although I support the parents position…

I am not completely convinced that the parents are right on this issue…

I am a parent no less than are those parents who participate in the anti-thimerosal campaign. I therefore take issue with the use of the generalization “the parents” to describe a faction representing the interests and perspective and political agenda of a fraction of families affected by autism.

I have no problem with parents seeking proper medical care for their children. I do have a problem with the escalating frequency with which parents like myself are subjected to accusations that we are ignorant and/or neglectful by crusaders intent not only on sharing their experiences and ideas, but on converting the masses to their viewpoint. All too many feel compelled not only to aggressively proselytize in the political sphere, but also to aggressively criticize the private medical decisions of strangers with different experiences and perspectives on their own or a family member’s disability. This phenomenon isn’t necessarily apparent to journalists like Mr. Westover, who I do not think is part of the “autism community.” However, it is abundantly apparent to many regular participants in Internet support and discussion groups on autism.

The phenomenon is exemplified by statements such as this one, made by “Rescue Angel” Holly Bortfeld of Pennsylvania, about the family decisions of someone she’s probably never met:

Bob Wright needs to deal with this and help his own grandkid.

Consider, too, the following, from Nancy Hokkanen of Minneapolis, another Generation Rescue representative and a prolific letter-writer:

Keep the focus on getting the message to parents that the autistic children they’re mismedicating actually need treatment for mercury poisoning.

Or Ms. Hokkanen’s comment on my letter to David Kirby:

Here is proof… that some focus only on our angry words rather than science, using rhetoric as an excuse to avoid pursuing medical tests that may have onerous implications. If parents such as Seidel have run appropriate tests on their children’s hair, urine, stool and blood and not found heavy metals toxicity, nutritional deficits, allergies, intestinal dysbiosis, autoimmune disorders etc., then they can reassure themselves about not treating their child’s autism biomedically.

To put it bluntly: Most likely, Ms. Bortfeld knows nothing about Bob Wright’s grandchild’s medical condition. Ms. Hokkanen oversteps her bounds by assuming that other people’s children are somehow “toxic,” and chiding other parents for making conscientious parenting decisions that differ from her own. I am not so moved as she to search for every imaginable dysfunction and source of environmental contamination to explain my family members’ difficulties and cognitive experiences. My family’s private medical decisions are nobody’s else’s business. (UK dad Kevin Leitch has something to say on this subject, too, in his article, A Person’s Medical History Is Their Own.)

I know that I am not the only person who is weary of being bombarded by autism-biomed evangelists, both in the context of their currently-intensive media campaign, and also in the context of public forums designed for participation by parents of all persuasions, by service providers and medical professionals, and by autistic people themselves. Witness this excerpt from a post made just yesterday by Bonnie Sayers, Autistic Spectrum Disorders Editor at Bella Online:

Although I am a parent to two children on the Autism Spectrum I do not believe vaccines or mercury poisoning had anything to do with either of my children being diagnosed autistic…

I have an open mind to this topic, but no real experience since it is not the case for my family. This is a real hot button issue in the media and for parents. As a parent what I find insulting is when I have mentioned in various online communities that I feel this is not the case with my children and then I get pounced on by parents who refuse to believe there is a genetic link. We have taken part in many studies with researchers into the causes of Autism.

Please respect my beliefs and do not inundate me with mercury poisoning or vaccine data. I am busy living and enjoying life with two children on the Autism Spectrum.

The “inundators” would do well to consider the advice offered (with no apparent irony) by Ms. Hokkanen to her fellow campaigners:

to anyone who wants to use the radical approach, go ahead — just stop using the words ‘our movement’ and “we.” Making political change involves compromise, not clubbing people over the head ideologically.

Anti-Mercury or Anti-Vaccine?

Craig Westover wrote:

To classify the parents as “anti-vaccine” is either ill-informed, intentionally misleading or hysterical reaction. Most of the parents that are prominent in the Minnesota movement specifically state they want safe vaccines, not the abolishment of all vaccines.

It is hardly “ill-informed, intentionally misleading or hysterical reaction” to describe many people involved in this campaign as “anti-vaccine.” This movement is not just limited to Minnesota, it is a nationwide movement, and it involves many more people than those who are “prominent” by virtue of their visible interactions with politicians and members of the press. Granted, Lyn Redwood, Mark Blaxill, Anne Dachel, and Nancy Hokkanen and others succeed in staying on the anti-thimerosal message, and are therefore well-suited to their roles as media and political spokespeople. Nonetheless, the crusade receives considerable moral support and input from anti-vaccinationists such as Mark Sircus of the International Medical Veritas Association, and anti-thimerosal activists regularly refer the curious public to www.whale.to, a site that publishes flagrantly antivaccinationist and even anti-Semitic material.

Not readily apparent from the public face put forth by prominent parents in “the movement,” there are many active campaigners who have made it quite clear that their anti-thimerosal stance is a facade assumed for political expediency. For instance, Julia Whiting, M.D. (“jw4994”), a DAN Practitioner in Virginia, admitted:

My stance is this: for “public consumption” I am just anti-mercury. No one can argue with that. Privately, for myself and family, I feel so betrayed by our public health organizations that I don’t forsee ever getting another vaccine for myself or my family.

Texas midwife and campaigner Karin Barasa (“kebmw”), also distinguishes between the public and private face of the push for vaccine safety:

I am saying… “We just want safer vaccines” (for your kids).... Meanwhile I am thinking (No way is my kid getting any more vaccines, especially not Hep B, Chicken pox, etc….)

Jenny Webster (“jennyw94”) of the organization Unlocking Autism, here takes the same approach:

just b/c I am very anti vaccine, does not mean I let that be the message. I always speak about the mercury and we all should.

Iowa-based “Rescue Angel” Tami Wilken (“tamiwilken”) acknowledges:

I can say that my daughter will never be vaccinated UNLESS she is in need of a tetnus shot.

Consider, too, this statement from Holly Bortfeld (“maximom”) (who suggested the picket-sign slogan, “Vaccines are weapons of mass destruction!”):

I don’t know if it’s common here or not, but I will never give my kids any vaccine again, mercury or not. They just aren’t safe.

Some admit that the thimerosal issue is just a starting point, and question every single ingredient in vaccines, in no matter how microscopic a quantity. (I call this the “eeewww factor,” just as easily invoked by reviewing a list of ingredients in many convenience foods which I, for one, do not fear.) For instance, Barb Beaudot (“mnkygrl9”) suggests:

maybe we should focus on thimerosal for now. if we succeed in getting that removed, then we can raise concerns about the aluminum and formaldehyde

Michele Crozier (“zookpr56”), a “Rescue Angel” in Pennsylvania, states:

Even if one isn’t anti-vaccine, trust has been eroded and I doubt if it could ever be restored in the vaccine industry or the institutions who were supposedly in place to protect us and failed… They remove mercury, then aluminum, then all the other dangerous ingredients and still how can the public ever trust again that they are injecting a safe product?

This is all part of the program, the deliberate consequence of a legal strategy summarized by John Gilmore of the National Autism Association (the autism-biomed contingent’s answer to the National Association for Autism Research):

One goal that we as a community must relentless pursue is undermining whenever possible the credibility of the fda/cdc and vaccine industry.

It’s Not Just About “The Science,” It’s About Our Lives

I also feel it is a missed opportunity to address issues rather than castigating people based on their beliefs… Neither side of the issue… benefits when the focus is on personalities and accusations. The focus ought to be on scientific research, on resolving the issue, not making a case that one side or the other is hysterical ill-informed parents or conspiratorial poisoners of children. (Excerpt from Craig Westover’s blog)

I am a member of a family touched by autism, do not choose to restrict my focus to scientific research, and will not pretend to rise above “messy” issues. My family and I live and will continue to live with the fallout of all the hyperbolic, catastrophic verbiage and inaccurate generalizations about autism and autistic people that are being broadcast in so many public venues these days, mostly by anti-thimerosal crusaders.

I will not “stick to the science” in my public discussions. I prefer to consider “the science” free from pressure to bend to others’ passionate beliefs; make my own decisions, based on my understanding, experience, instinct and best judgment; and let the scientists and others whose debating skills are stronger engage in public debates on scientific subjects. My concerns are as much in the social realm as they are in the realm of science, and both realms are worthy of thoughtful consideration.

If people’s beliefs and personalities are illuminated by their own words and behavior, so be it. This is not just a debate about scientific subjects between a unified front of parents and the greater scientific community, as should be apparent to anyone who has read my letter to David Kirby, or any of my other essays or letters on the subject. It is also a “debate” about our lives about how individuals and families dealing with disability are portrayed to the world, and about how people treat each other.

The events I recount and concerns I address may seem like an unnecessary distraction, or too unpleasant to consider. The title Mr. Westover assigned to our exchange, Playing at the fringes of the autism/vaccine issue, implies that he deems the questions I raise to be inconsequential. Indeed, my concerns are not trivial.

My situation is not a whole lot different from that of someone who discloses family abuse. In such a situation, there are inevitably those who rise up in indignation at the person who speaks the painful truth, with expressions of distaste, denial, and exhortations to disregard the one who has the audacity to bring up difficult issues.

No doubt many of the autism=poisoning crusaders feel that they, too, are in a similar position. There are many Cassandras in this world, and our visions are not all the same.

Comments


  1. “If people’s beliefs and personalities are illuminated by their own words and behavior, so be it. This is not just a debate about scientific subjects between a unified front of parents and the greater scientific community, as should be apparent to anyone who has read my letter to David Kirby, or any of my other essays or letters on the subject. It is also a “debate” about our lives about how individuals and families dealing with disability are portrayed to the world, and about how people treat each other.”

    Mr Westover – read that bit again. Now read your statement about how we should all go easy on people who see fit to post personal contact details of others on public mailing lists again.

    Lather, rinse and repeat until assimilated. — Kev    2005-07-30 14:24    #

  2. Essentially, I don’t find a lot to disagree with in your comments. Parents like yourself have been thrown, unfairly, into a position you’d rather not be in. My question is, what is the alternative?

    Should those that believe thimerosal caused their children’s symptoms simply keep quiet, not seek treatment for their children because it is upsetting to others?

    I don’t think that’s right either.

    Do I fault those that step over the line and impose their views on people or falsely characterize people that disagree with them? Yup. I do. On both sides.

    But whenever you have controversy, there are people on both sides of any issue that are going to go the route of personal invective. That’s not right, but neither is it a valid reason for burying an issue.

    Frankly, I blame the government agencies involved for most of the problem. It may be the nature of bureaucracy, but it is because the government has done such a poor job refuting the thimerosal claim—has demonstrated more interest in disproving the claim than advancing the science—that you find yourself in the position that you do today. Ditto the parents on the other side of the issue.

    From the start, government has taken an adversarial position. Before many of the autistic children of the parent activists today were even born, Dr. Maurice Hilleman—no stranger to vaccines or immunization—was raising warnings about concentrations of mercury being administered in the immunization schedule. He was ignored. Simpsonwood is not about a conspiracy to poison kids; it’s about an arrogance approaching idolatrous religious faith that prohibits any questioning of immunization safety.

    I don’t know a single person among those of us without an autistic child connection that are converted to the thimerosal hypothesis that didn’t start out highly skeptical of any connection between vaccines and autism. However, you don’t have to be a rocket scientist to figure out that one side in the debate is using stagnant data to defend an entrenched position and the other is pushing the envelop of science to stress test and risk its hypothesis.

    You also don’t have to be a rocket scientist to know, given their differing approaches to science, which side is more to be trusted.

    All I can tell you is that I strongly believe that the thimerosal question is far from settled by retrospective epidemiological data. Nothing in the current research conclusively proves a connection, but each new study enhances the plausibility of a connection. Nothing has surfaced in the current research even hints at contradicting the plausibility of a connection. The data coming out of California regarding diagnosed autistic children, sorted by birth year, should start to flatten out and decline. If it does, that’s a pretty good sign that there is a connection. If it does not, conversely, that’s a piece of data that pretty conclusively rules out a thimerosal link.

    I don’t think anyone would be served well if the issue were to go away tomorrow. All would be better served by a little less animosity.

    Feel free to comment on my site any time. In the past on a number of topics I’ve posted views opposed to my own, provided they are on point and avoid personal attacks. If you want to make your case in under a 1,000 words, I’ll seriously consider posting it. — Craig Westover    2005-08-02 15:19    #