On Jenny McCarthy, “The View” and snake oil — a dialogue

Russell: Hello, Rose.  By now you’ve no doubt heard the exciting news that Jenny McCarthy, quondam host of “Singled Out” and anti-vaccine firebrand, has been hired to replace Elisabeth Hasselbeck on “The View.”  This decision has proven… controversial.

For my part, I’m of two minds about this.  On the one hand, I am loath to see Ms. McCarthy’s dangerous campaign of misinformation get a broader platform.  I’ve written about the safety and efficacy of vaccines over and over and over, and so it should come as no surprise that I would object to the continued celebrity of someone whose notoriety is now almost entirely due to her vigorous campaigning against them.  What I really wish people would do with Ms. McCarthy is ignore her, and this very prominent new platform will give her a fabulous new perch from which to launch further efforts against one of the greatest triumphs of public health in human history.

On the other hand, I chafe at the notion that the best way of dealing with someone’s wrong-headed views is to agitate for that person to be silenced.  Perhaps it’s a ridiculous pipe dream, but I’d like to think (if the topic of vaccines ever came up) that the producers of “The View” would give plenty of time to a guest on the show who would articulately and clearly lay out the solid case for the safety of vaccines to counter Ms. McCarthy’s point of view.  Hell, for all I know, one of the other hosts is a staunch proponent of immunizations and will check Ms. McCarthy on her own without needing to bring someone else in.  As misguided as I find her, I don’t think trying to shut her up is the way we should be dealing with her.

However, that raises a question, and it’s one I’d like your perspective on.  To me, it should be obvious that one side is right and the other wrong.  To me, the case is as sound as can be.  But my thoughts on the matter are obviously informed by my medical training and my place within the medical establishment.  I come at Ms. McCarthy’s ilk from a position founded on years within the healthcare community.  I don’t really know what it’s like to experience a medical issue, even one that seems completely settled, from the outside.

Furthermore, I’m all too familiar with the limitations on what medical science can say with authority.  On an essentially daily basis I’m forced to give patients my best guess, usually about something minor like symptoms that are probably viral or a rash that’s probably nothing more than mild contact dermatitis.  A certain degree of uncertainty is inescapable.  And that’s to say nothing of major lacunae in medical science like where autism comes from.  We know it isn’t from vaccines, but we don’t know much beyond that,  And someone peddling an alternative answer that offers ersatz certainty must be appealing.  As I’ve written before:

Sometimes no answer is the only answer.  It’s awful, and medical providers need to acknowledge how hard it can be for parents or patients when we can’t give them a solid answer for their questions.  “We don’t know” must be delivered with humility, compassion and patience.  But sometimes “we don’t know” is the truth, and the truth is better than a lie.

If medical science is forced by ethical probity to admit its ignorance, can a peddler of snake oil and charmed cures ever be effectively refuted?  If a medical doctor must admit to the mother of an autistic child “I don’t know why” and one of Ms. McCarthy’s fellow travelers shouts “I do!”, can we hope to persuade a public intolerant of uncertainty?

I’m especially curious to know your perspective as the mother of a child with special needs.  While your son’s Ridiculously Rare syndrome has a known cause, you no doubt have encountered many people touting treatments meant to help him that are outside of what has been proven to be effective.  Is there a way that we could be making our case that would reassure in ways that we’re failing to do so now?

Rose: Hi Russell!

So, like you, I have mixed Jenny McCarthy views. But I see no reason against her joining “The View,” although I wouldn’t say I’m excited about it. I think McCarthy is mistaken about vaccines. She has likely caused some degree of harm due to these mistakes. I wish she would correct herself. Vaccination is one of the single most important advances in medical knowledge ever. The amount of lost life and suffering that is now prevented by vaccination is one of humankind’s most impressive achievements.

However, I also think McCarthy is unduly vilified. I strongly suspect there is some sexism involved in her vilification: she is a former Playboy model and a mother, two groups who are traditionally considered to have reduced rational capacities (the latter especially when the issue that requires rational thought regarding her kid).

I actually find Jenny McCarthy, minus her anti-vax campaign, appealing. It is not every Playboy model who is able to make a career for herself after posing. She is articulate and charismatic and forthright. Her book about pregnancy was funny. She has an astonishing ability for someone so gorgeous to have women as well as men find her attractive. While her cause is wrong-headed, there are many, many famous people who set out to use their fame to “raise awareness” or change the world in some way. She has been far more successful at it than most. More successful than Amanda Peet was in a pro-vaccination counter-campaign. This is quite sad, in that her cause has been the wrong cause. But it is also an impressive feat.

I have three children, one of whom has a Ridiculously Rare Syndrome caused by a chromosomal disorder. He has what the kids these days call “multiple intensive needs,” the condition formerly known as “severe or profound psychomotor and cognitive disability.”

So. I have some idea of what parents of autism deal with.

Most people with autism do not know what causes their kid’s symptoms. I can point to a difference in my kid’s genome. Perhaps, then, a parent of a kid with autism might be more apt to grasp at straws and snake oil than me.

But no one really knows why missing that particular part of a chromosome, and having an extra piece of another chromosome, causes the disabilities that it does. There is one gene he is missing that makes a protein that helps neuronal axons form. Reduced functioning of this gene has been associated with autism and Parkinson’s. There is another gene he is missing that makes a protein that aids in neuron dendrite formation and adhesion. Lack of this protein has been associated with Alzheimer’s. But I don’t know anything else. I don’t (nor do scientists) know what, if any, roles are played by the other genes he is missing. I don’t know why, if Alzheimer’s and Parkinson’s are degenerative, Ridiculously Rare Syndrome is not. People with it develop, even if verrrrry slowwwwwly.

Some fellow syndrome parents do grasp at straws. I have heard of high-dose supplement regimens, mitochondrial (or something like that) treatment in Switzerland, oxygen chambers, “brain development clinics.”

I totally understand, and to some degree succumb to, the desire for a snake oil cure. McCarthy has, as I have, seen her kid’s opportunities in life significantly reduced. She has seen her burdens of parenthood dramatically increase. No one can tell her why, as no one can tell me why. We want to help our kids. We want to do something, not simply sit idly by.

Those of you who are parents of typical children, try to imagine this happening to you. Can you not see how strong an emotion this must be? How strong a reason, not just an emotion? You probably fall prey to it, too. I am continually astounded by the number toys designed for “cognitive development” (with zero evidence), or flash cards, or music in the womb, or what have you, that are designed for the improvement of typical kids. Every woman in my social circle who can breastfeed does breastfeed. This is often much more uncomfortable, it should be acknowledged, than bottlefeeding. Some women love love love breastfeeding, and feel it creates an unbreakable bond. Some women however, find it difficult and miserable. Let’s consider that second set of parents. Nipple cracks, infections, far more sleepless nights (they cannot alternate feedings with dads the same way).This is for relatively little benefit, really. Reduced GI infections, reduced ear infections, reduced obesity, a 3.8 point difference in IQ. This is indeed a benefit, but it might well be simply correlational: people who breastfeed might be more likely to have habits that reduce GI infections, etc., in their kids. But the prospect of a somewhat increased chance of your child having a GI infection, or 3.8 friggin’ IQ difference (I defy you to detect such a difference in two people you know) is rather small potatoes compared to the deficits and difficulties my child faces and those with autism face. Yet these uncomfortable breastfeeders are willing to go through quite a lot of misery to prevent such an outcome. Would someone with a dispassionate cost/benefit risk analysis decide to do the same? I am not saying breastfeeding is snake oil (although I will happily say that about cognitive development toys and Baby Einstein videos). But if you think breastfeeding is important, or Baby Einstein videos, or if you have obsessed whether your child’s preschool was developing your child’s fine-motor coordination or social skills adequately, then you understand something of the lure of snake oil.

Here’s what I believe: I believe that my kid will never, ever, ever have normal brain function. His brain itself was formed incorrectly, and he went through critical periods of development with reduced brain function. I generally believe and plan on his having multiple intensive needs for the rest of his life. My current expectations are that he will continue to develop, albeit slowly. He will walk with assistance, he will be able to communicate in short sentences (either verbally, through sign language, or with an iPad app). I believe some self-care skills will be present (he already helps with his dressing and tries to brush his own hair), but I don’t know to what degree. He will always, I assume, need constant supervision.

Here’s what I wonder, sometimes. Almost no one researches my son’s syndrome. It is too rare. But will developments in treatments for Alzheimer’s or Parkinson’s or even Down Syndrome help him? Again, I never think he will have typical brain function. But will he have higher brain function? It is this hope, this wondering, that makes me sympathetic to parents who succumb to pitches for snake oil.

All three of my kids are fully up-to-date on their vaccinations. I do, however, give my kid some forms of snake oil. Based on only one study with an n of 30-something, I give my kid an over-the-counter supplement that was shown to reduce self-injurious behavior in people with autism. I have not waited for a larger study or replication, so it has not been scientifically validated. I did check with his pediatrician to make sure that the supplement wouldn’t harm him. She thought it wouldn’t, and I should go ahead and give it a shot. I notice a reduction in self-injurious behavior and marked increase in motor skills and cognition when he is on it. Although, obviously, I don’t know if it’s the supplement that’s doing anything. Two other supplements I give him that are basically snake oil in terms of evidence (but that I think are unlikely to harm him) are probiotics and fish oil.

I am not a doctor or scientist, and I have researched my son’s condition (yes, an amateur researching! Horrors!). There are times when I think a doctor has given a wrong diagnosis and prescribed a treatment in error. What am I supposed to do in that case? Trust that all doctors and science is right?

Science is both a body of knowledge and a method. In that method is included the concept that every scientific conclusion in that body of knowledge is provisional. It could be overturned. Any conclusion of the majority of scientists might be wrong, and some, of course, have been wrong. I most certainly do not take an entirely skeptical approach to scientific knowledge. However, questioning one widely held view by scientists does not, in itself, make you “anti-science.” Indeed, some significant scientific leaps were made by people who questioned scientific consensus.

That said, Jenny McCarthy is unlikely to make any scientific leaps forward, and she does not have adequate reasons for what she believes. I teach philosophy, for goodness’ sake. I am all about getting rid of false beliefs, gaining true beliefs, and having good reasons for beliefs. I strongly believe that McCarthy is morally culpable in not having good reasons for her beliefs. The scientific evidence against vaccines causing autism is about as strong as scientific evidence gets. It is seriously, seriously unlikely to be overturned. Because McCarthy is not able to weigh the strength of evidence when considering whether scientists are likely to be wrong, she has failed her child and the public.

And yet. Can you not understand, even a tiny bit, where she’s coming from? Can you not be sympathetic? Are absolutely all your beliefs true? Have you never once acted without waiting for the evidence to come in? Yes, her mistake is to a much different degree and possibly with sadly, sadly deadlier consequences. But can you not recognize, at all, the humanity in this?

Because the discussion of her grants her absolutely zero charity. P. Z. Myers calls her equal to “a puppet with rags and styrofoam for a brain.” From the article to which Russell linked above:

“I think a network hiring a homicidal maniac, giving her a forum in front of people who have young children and are impressionable, is the most irresponsible thing I’ve heard of in a long time,” said Michael Specter, a New Yorker magazine staff writer and author of the book, “Denialism: How Irrational Thinking Hinders Scientific Progress, Harms the Planet, and Threatens Our Lives.”

Um. Unless you’re Peter Singer, there’s a moral difference between a homicidal maniac and someone who misguidedly thinks she is helping people, but actually hurts them. Not that the latter has no moral culpability. She has serious, serious moral culpability. But there is a moral difference between her and John Wayne Gacy.

Why do I suspect sexism? Nearly every article critical of her starts with the fact that she was a Playboy model once. Instant discredit. Note, too, in the quotation by Michael Specter above, the connection between motherhood and lack of rationality: “…people who have young children and are impressionable…” “The View” is a show for women. What is he saying? You know those moms. They’ll believe anything a hot chick on TV tells them.

Why is McCarthy getting all the blame for this? Why not the parents who agree with McCarthy who are committing the same sin she is? Why is she responsible for those deaths, and not the parents? Why is there a site called Jenny McCarthy Body Count? Why isn’t it Andrew Wakefield Body Count? Or Irresponsible Parent Body Count? How do the creators of the site know which of those deaths are actually causally related to McCarthy? They don’t have scientific evidence, after all. You’d think pro-science people would understand the difference between correlation and causation.

“She’s very dangerous. It’s unfortunate that in our society, scientific evidence is now just taken as some other point of view,” said Specter, adding that recent outbreaks of easily preventable diseases such as measles are “directly attributable” to people like McCarthy.

How, exactly, does he know which deaths are attributable directly to people “like McCarthy” (whatever that means)? Citation, please.

To make a very long story short, I don’t think there is a problem with hiring Jenny McCarthy. She has a serious moral failing, possibly causing dreadful consequences. But she didn’t act in a vacuum. Others are responsible, too. Can we not hear what she has to say? Must we actually make sure no one hears what she has to say because she says one thing that’s wrong? I mean. Seriously? Is she so gorgeous that all critical evaluation stops when words fall from her lipsticked mouth? My guess is that most other anti-vaxxers looked on the web, heard from friends, etc. McCarthy was likely not their only source of information.

I would love, love, love for “The View” to have someone on, who treats McCarthy with a little humanity, explain why her reasons are not as weighty as reasons in response. I think that would actually be awesome. In any event, I see no good reason why she should not be on the show.

 Russell:  Thanks for you response, Rose.  I appreciate hearing a perspective that, in its own way, is a bit more pro-McCarthy.

I’m not sure if, when asking “But can you not recognize, at all, the humanity in this?” if by “you” you mean me.  If you’re asking me specifically, then yes… of course I can see the humanity in it.  I don’t think McCarthy is a monster and wouldn’t endorse much of the overheated rhetoric about her.  I agree with you that she is charismatic and appealing.  I thought she was a gas on “Singled Out.”  No matter what specific diagnosis her son has, I have no doubt that she loves him deeply and would never question what motivates her campaign.

So why am I taking the time to criticize her but not Andrew Wakefield?  Well, I would happily spend oodles of time excoriating him, but he isn’t being offered a prominent platform on a hugely successful daytime talk show and she is.  And after all, he has been stripped of his medical license in the UK, whereas her fame is actually waxing right now.  So she bears discussion in a way that he does not.  For what it’s worth, I actually locate more blame with him for the whole anti-vaccine movement than with her, since he is a fraud and she is merely misguided.

But she is deeply misguided, and has contributed to serious harm.  The re-emergence of previously controlled illnesses is a major problem, and 100% needless and avoidable.  It’s hard think of an apt parallel, since nobody would take her seriously and the result would be undeniably catastrophic if people did were she to advocate avoiding insulin, for example.  Her recommendations are much more insidious and much more credible, for some reason.  And so, while I don’t want her put in stocks or conflated with mass murderers, neither am I thrilled to see her given yet more celebrity.

Rose: Oops, I most certainly did not mean you! I meant the people who speak in such nasty, derogatory, sexist terms. I do not in the least think that about you. In fact, your tone is quite measured. In my irritation at the people who are so demeaning, I defend her more, probably, than I really feel. I really do think she has done something wrong, and if she convinces anyone else, that would be tragic. I hope that someone else on the show argues with her, and I suspect they might. In any case, I don’t think she needs to be muzzled. It reminds me, in weird way, of the religious boycotters of television. They do not like someone, someone they suspect of causing real harm, and so they demand that she not be heard. In either case, I don’t see why she shouldn’t be on TV. If you don’t like it, don’t watch “The View.” I also do not want to see her gain more celebrity. But I don’t think we need to insist on her removal.

Russell:  No worries.  I kinda assumed you didn’t mean me personally.  And, as is so often the case, we probably agree more than we disagree.  It was good to reminded that Ms. McCarthy isn’t just a caricature of ignorance, as I would probably err on the side of vilifying her.  I just don’t want her granted some kind of O’Reilly-esque carte blanche to browbeat people who might rise to challenge her view on vaccines, should the subject come up.  Charismatic as she may be, she’s still undeniably wrong, and I’d just as soon she not parlay her fame into yet more unvaccinated children.