On September 30th, National Book Critics Circle Award winner Eula Biss released her book On Immunity: An Inoculation, and by the end of the week it had shot to #661 on Amazon’s Best Sellers ranking, helped in no small part by press coverage like National Public Radio’s author interview, titled “Vaccine Controversies are as Social as they are Medical”.
Upon getting an email from NPR promoting this interview as one of the week’s most emailed articles (yes, that clause should raise a few eyebrows), I decided to read through all of the nearly 800 comments that piece had received over the past 7 days. My intent was not to respond to the debate over whether or not childhood immunizations should be mandatory or voluntary, embraced or resisted. I was simply curious to see what stood out among the conversations around what Ms. Biss labeled an at least equally social, as much as a medical, controversy.
OK, cards on the table.
- I was a practicing acupuncturist for 6 years (does that belie an anti-immunization bias?).
- However, my practice was with Boston’s AIDS Care Project (ACP): we were state and federally funded, with satellite clinics in some of the nation’s most prestigious research hospitals (do these funding sources and practice environments make me less likely to be anti-immunization?).
- Furthermore, with the advent of protease inhibitors in the mid 90s, the main thrust of our treatments – and the main reason for referrals to our clinics – was ACP’s ability to lessen those medicines’ side effects (Hmm, a career compensating for pharmaceutical side effects – anti-immunization?).
- But this lessening of side effects was a service we provided not as a contradiction, but as a complement, to our clients’ “conventional, western-based” therapies. My “alternative medicine” colleagues and I at ACP were – and remain – convinced that these pharmaceuticals were literally snatching people we cared about back from the brink of death (definitely pro-western medicine in this circumstance; but does that translate into my being also pro-childhood immunization?).
- Consequently, infectious disease docs sometimes sent the newly diagnosed HIV+ our way as the acupuncturists and herbalists who would dissuade the “I’m going to go au naturel and not take any drugs” crowd from making what, in our experience over many years, we knew would be a disastrous long term decision.
Where does all that suggest my allegiances lie: a middle ground?
But Ms. Biss said in her interview that “in writing this book, I became very wary of the idea of a middle ground … in pursuit of a middle ground, people will kind of split the difference between the two extremes that they’re hearing … and I’m not actually convinced that that’s a viable middle ground … there are situations where a middle ground is not viable … [such as] when you split the difference between information and misinformation, you still end up with misinformation.”
Which perhaps belies the polarized conversation I found in those nearly 800 comments to NPR’s interview of Ms Biss.
Concisely capturing the predispositions that lay at the heart of the competing study- and statistic-citing that characterized 90+ percent of what I read was this salient exchange:
- “Ignorance is the only reason people don’t immunize, or vaccinate.”
- “Ignorance is the reason you would write, ‘ignorance is the only reason people don’t immunize, or vaccinate.’ ”
Well, if my mixed-up establishment/anti-establishment medical background suggests that I should ally myself with a middle ground on this issue, here it is: the only reason people do or do not immunize, or vaccinate, is not ignorance, but because they both want to protect their children.
With that in mind, there is another reader comment I would like to highlight from the exchange on NPR’s webpage:
“I have seen a lot of articles in which it seems like the writer wants to encourage people to vaccinate their children, but the tone is insulting or derogatory toward the people who were against vaccines. It definitely doesn’t help to alienate your target audience.”
That certainly resonates with my time at ACP: I am thankful I can say that none of the “I’m going to go au naturel” referrals I received during protease inhibitors’ earliest days – when those medicines’ side-effects were at their most caustic and long term outcomes most uncertain – walked out of our clinic without making and keeping a commitment to comply with both their recommended acupuncture and pharmaceutical regimens of treatment. This was not a result of belittling their original position, but understanding it, respecting it, and including it in the conversation of how to best ensure what was ultimately everyone’s shared aim: that client’s well-being. That well-being included enabling our client to have some degree of control over a situation that in many ways was defined by the loss of control it created. Perhaps it helped that ACP was in the position of Nixon going to China in this case, but even that would have gotten us nowhere if we had espoused either of the “ignorance is the only reason” arguments head butting above.
In other words, NPR’s most emailed article for the week ending 10/5/14 is not an academic debate – it is an emotional one.
And at the crux of that emotion are a few of the most powerful – I would argue, the few powerful – statements among those conversations, which occurred when the competing study- and statistic-citing was set aside and people spoke plainly about their own experience:
- My child had a terrible reaction to the whooping cough vaccine, and you don’t know fear until you see your infant child screaming in agony and his muscles going rigid, the sight of the shot swelling red-purple and moving through his body like a poison. There ARE bad reactions. People who see an adverse reaction in a family member worry.
- We had two reminders in my class of what not being immunized could mean. A boy rode a wheel chair and a girl wore leg braces and used walking canes. I grew up in the 1950s and several of the kids in my town got polio. I received three rounds of polio vaccinations: I was in the control group when the Salk vaccine was tested, then the real vaccine, and finally the Sabin vaccine as a young teen. The images of children near an otherwise preventable death makes vaccination easy to understand.
OK, cards on the table.
When our son came to the US and into our care as a six year old, we chose for him to go through the process of – following guidelines for waiting periods and everything else – making up for five years of missed or mis-administered immunizations (in institutional or poverty afflicted settings, doses can often be given too far apart, or inadequate refrigeration pre- or post-shipment to a clinic can render a shot ineffective: our son’s titers showed insufficient or even no antibodies to all of the illnesses against which he had been allegedly inoculated).
We did it to protect him and to protect the children who would be his family, friends, classmates and neighbors. The reason why we did it was not ignorance of either side of this debate, but really the difference between the two sets of plainspoken experience above.
The first speaks of the isolated incident that, however heartrending, was always offered in the comments as the experience of that individual family, and which – as those families themselves commonly conceded – may or may not be related to any longer term pain and suffering that a few of those children unfortunately endure. But if that were my family’s experience with one child, like them, I don’t know how well I would listen to further academic debates in making my decision about whether or not to inoculate a second.
But it isn’t my family’s experience, and so I hear in the second set of comments the direct harm caused to hundreds, thousands, and – when considering the historical consequences of all of the many now commonly vaccinated diseases – millions of children who had the misfortune of living in a time when or a place where those vaccines were not available. That is my family’s experience: my wife, who comes from an emerging market nation, can recount many relatives who died or whose adult lives were complicated by diseases that would have been prevented by inoculation; and although I survived without ill-effect more than one disease against which my son is vaccinated today, I can recount family members of the generation before me who were not so fortunate.
So that is where my bias lies – and the bias of most families – because that is most families’ experience; but where the most recent and impactful experience on a family is different, I imagine – by imagining myself as the parent of that child – dry data will be unlikely to dissuade.
Consequently, I concede that Ms. Biss is right – the reasoning behind families’ decisions whether or not to vaccinate their children is not primarily medical, but social – though perhaps not for the reasons she intended.
And perhaps, therefore, the most persuasive argument for vaccination – as I suspect it was what ultimately persuaded ACP’s even asymptomatic clients to take that first generation of protease inhibitors – will be the argument presented, not as dry data, but as the most commonly experienced personal story we share.
That stated, of all those 800 comments to Ms. Biss' interview, this is the one that I take to heart when I remember holding my crying son as the vials of blood were drawn and subsequent syringes inserted, five years of missed and mis-administered inoculations caught up in a matter of months:
“When I was a little girl, my father who was born in 1913 and became a physician and surgeon, would take me to visit the family cemetery where I learned about my relatives who were long gone. There was the younger sister, my aunt, who died at age 2 from the flu, or his young cousin who died from typhoid fever. As we walked I was drawn to the little graves of children with the heartache of the loss so young etched in stone. Sometimes one family lost many children with dates of death close to one another. My father would explain the outbreak of this or that childhood disease; how the hospitals had wards set up in the spring or fall because this was the time you would see outbreaks of polio or other, communicable, childhood diseases. He would also tell me of the hard work, struggle, and sacrifice that doctors and researchers put into developing vaccines to prevent so many deaths. We have forgotten the losses suffered before those vaccines. Imagine what those parents of the long dead would have given to have vaccines available for their children.”
We lose the power to persuade when we lose the power to imagine the positive place from which even opposing perspectives come, and the power to help others imagine ours.
After all, no one has ever accused humans of being primarily medical beings, but social.
And similarly, Ms. Biss’ book is primarily not about vaccinations, but children.
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