A mom on the sidelines of the vaccination maelstrom

I’ve been sitting quietly on the sidelines of the vaccination maelstrom for some time. No one with a disabled child (like me) and, therefore, friend to other parents with disabled children, enters this discussion lightly. Knowing the backstories of children with autism or seizure disorders, knowing the cost of caregiving at a visceral level, I find myself unable to fling judgment at anyone.

It’s not that I don’t know what to think. I do: My children have had their vaccinations on schedule, even the annual flu shot. I didn’t make a personal choice to have them vaccinated; I considered vaccination critical to both their well-being and the good of society. Having studied 16th and 17th century literature, I’d read too many accounts of dead children and grieving parents to think otherwise.

Yet, I find the current discussion brutal and politically calculating. Republicans are warily enthused at the chance to portray liberals as anti-science for a change. Liberals and progressives trot out the twin specters of wealth and selfishness. It’s an issue people care about, so someone can earn political capital.

Howard Dean summed up the categories of anti-vaccination politics: “One is people who are very much scared about their kids getting autism, which is an idea that has been completely discredited. Two, is entitled people who don’t want to put any poison in their kids and view this as poison, which is ignorance more than anything else. And three, people who are antigovernment in any way.”

Fear, ignorance and paranoia.

As for ignorance, in my wanderings about the internet, I’ve read anti-vaccination defenses and noted factual errors, but then again, maybe my science education is better than most. U.S. high schools generally require only one year of science to graduate (usually watered-down biology). Because any nuanced understanding of medicine requires familiarity with chemistry and molecular (even sub-molecular) sciences, few grasp the details of cell receptors, genomics, and the variety of metabolic pathways that have evolved to allow bodies to do the simplest things, such as breathe or snap fingers, let alone fight off disease or repair cell damage.

Speaking of fear: Our culture tends to hand us science in the form of over-hyped published studies and science fiction. Science and technology are rarely the heroes of books and movies. If anything, Hollywood and literature have conditioned us to fear scientific advances and technological innovation. What is human is “natural” and good; technology becomes unnatural.

On the other hand, the news media often treats scientific studies with the pseudo-religious reverence of Moses receiving the Ten Commandments. They fail to point out that a “study” or published paper is just a contribution to an ongoing conversation among scientists. Even if Andrew Wakefield’s 1998 data on vaccines and autism had not been faked, no responsible scientist would have accepted his findings until proven on a larger, long-term scale—which is precisely how Wakefield was discredited. The system worked.

People do their best with the information at hand, the messages absorbed from our culture, and concerns for their children. What I’m hearing over and over are parents, even educated parents, trying to understand the vast amount of technical information available in an Internet era when authority is difficult to identify.

Decentralizing authority isn’t necessarily a bad thing, but without specialized knowledge, trust becomes a necessary emotional touchstone for most people. And, thus, paranoia. Our politicians give us little reason to trust them. U.S. policy has gradually abandoned group benefit for several decades. We live in an era of unfettered individualism, not by accident.

Why would a parent prioritize the needs of his or her child over the good of the whole? Because the message is drummed into us repeatedly that we’re on our own in the new economy. A child with disabilities, even the slight risk of one, presents an economic catastrophe to a single family. Even an ill child is a heart-breaking financial burden. Then, of course, there are the social and education penalties to families. It’s no wonder many parents cosset and protect their children.

Those of us who parent disabled children are the canaries in the coalmine of social policy and health insurance. Most of us are left on our own—Medicaid waivers vary by state in terms of disabilities covered, and there are long waiting lists. My husband and I estimate we’d spent approximately $250,000 before qualifying for a waiver—and that with good insurance coverage.

In the U.S., we can’t even agree on healthcare for all citizens, let alone children. We dole out measly child medical and education programs to the poor as a form of government “charity,” which lets us off the hook ethically when the services are substandard. Those of us who aren’t poor wouldn’t settle for that for our own children, but our fellow citizens have no choice, do they?

We’ll continue to struggle with the costs, benefits and consequences of “choice” parenting until the U.S. can re-establish trust with its own citizens and move toward domestic policies that protect children and bolster families, reducing the risks and penalties of raising them. Until then, it’ll be every person for themselves.

Jeneva Burroughs Stone is an essayist, poet, blogger of the rare & unknown, practical g/i nurse, interpreter of EOBs, queen of medical-necessity letters, unlicensed PT, knowledgeable wheelchair mechanic. She has a PhD in Renaissance literature with a focus on gender and sexuality, has taught high school and college students, and worked on Capitol Hill and as an editor in higher education policy.

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