Making Space for Stories (and an updated embed)

Those are new Benzo-Withdrawal Drool Bandannas that I ordered online. I couldn't resist the marijuana leaf one and hope it has extra powers as it wicks away the vile drug that permeates Sophie's body.




I don't have much to say or write today. I've been thinking a lot about an article I read in Philly Voice about vaccinations. The writer, Amy Wright Glenn, is a pro-vaccine journalist and mother, but she addresses those of us whose children have been injured or killed by vaccinations with unusual gravity and admonishes those of you who would argue against our beliefs and stories. Here is a brief excerpt:

Unfortunately, it’s easy to disregard the stories of vaccine injury, disability or death as statistically insignificant or inconsequential. Collectively we fiercely embrace a utilitarian ethic with regard to vaccine injury. The stories of families suffering serious injuries are too often ignored, discredited, used to further anti-vaccine campaigns, or quietly accepted as a type of collateral damage in our noble war to eradicate the scourge of infectious disease from the planet.

I will say that this is, perhaps, the only article or opinion I've ever read on the issue that doesn't make me literally sick to my stomach or provoke what I can only call post-traumatic stress syndrome. Those overwhelming feelings come no matter the position, and after twenty years I'm only dimly aware that they are, perhaps, related to deep and damaged feelings of not being heard.

One safeguard against a decrease in vaccination rates is the public ridicule awaiting those who question the ever-increasing number of required immunizations. Even parents who were formally compensated by the vaccine court report feeling ridiculed. For example, in 2006, Florida couple Theresa and Lucas Black received a $2 million settlement along with $250,000 a year for medical expenses from the vaccine court. Why? Their 14-year-old daughter Angelica is permanently and profoundly disabled after receiving a standard round of inoculations at 3-months of age.

No matter how many times I try to reasonably talk or write about this issue, even going so far as to allow a renowned journalist to interview me and take photos of my family for National Geographic Magazine, I've never been able to convey what Ms. Glenn does so beautifully in her opinion piece. I know that's because of the emotion I feel and convey, natural given my own experience. I hope that you'll all read this piece, even those of you who joined in the social media mockery early this year or who believed that those of us who choose not to vaccinate our children or who do so on a different schedule should be vilified or mocked or pay fines or whose children should be kept out of school.

Nineteenth century British philosopher Jeremy Bentham argued that an action is morally permissible if it serves to increase the greatest good for the greatest number of people. Contrast Bentham’s utilitarian ethic with German philosopher Immanuel Kant’s deontological, or duty based, moral theory. According to Kant, individuals are not means to be used to justify an end, no matter how pleasing or far-reaching such an end may be. Individuals are “ends unto themselves.” In other words, we have value independent of our usefulness to society. 

Thank you, Ms. Glenn, not only from the bottom of my vast heart, but also from the top of my head and my intricate, mysterious brain. You have made space for our story.

Given these legal and market-driven realities, we must make space for the stories of families who pay the price of our increasingly mandated utilitarian ethic. 

Watch this, my pretties. It happened today in the United States Congress:

On Condescension and Mama Bears

via USA Today***

The National Geographic article has re-appeared. Evidently, there were technical difficulties, but they seem to be resolved. No sooner had it gone back up than the conflict arose, again, and, again, I am drawn into it like the proverbial fly to shit. Excuse my French. Someone posted a link to the article and provoked a stream of comments on her Facebook page, many grateful for the perspective and nuance of the article and my experience, but many filled with the sort of condescension and patronisation that is particularly irksome. Here's one comment:

I hear you, I am just stating that if the anti-vaxxer were placing my children at risk, I would be angry and unkind and would not care. However, if I were discussing vaccination with an anti-vaxxer in a venue that was not placing my children at risk, I would be civil--and would hope others would be as well. 

The woman who posted it called herself a mama bear because that's how much she cares for her children (as opposed to someone like myself who couldn't give a shit). The parenthetical phrase is mine, by the way.

Let's get something straight. I am the first person in the universe to claim that one of my many faults is a tendency toward  -- or let's face it -- outright condescension, and while it's often an unconscious tendency, when I'm called on it, I'll agree and apologize. I am always trying to do better. I need to do better. Given that it's a fault of mine, I also wonder if I'm particularly sensitive to it when it's directed at me -- particularly when it comes to this vaccination issue. I've had a lot of well-meaning people post the link to the National Geographic article with the following attachment:

I'm completely pro-vaccination, but...

or

I've vaccinated all of my children and believe everyone should vaccinate their children, but...

or

You're exactly the reason why everyone should be vaccinated, so we can protect your kids!**

and

I'm vaccinating my children so that you don't have to vaccinate yours. (One woman who repeatedly commented on the National Geographic site, insisted that I thank her for providing my children with protection, i.e. the arguable herd immunity theory).

The buts are sometimes caveats that well-meaning people include so that we understand that though they're being "open-minded" and appreciate my story and perspective, they also want others to know that it's implicitly wrong. Sometimes, the but is used as a protective device because they don't want the usual vitriol heaped upon them. I get that. I've used it myself.

Here's the thing. I'm a mama bear, too. I'm sick to death of patronisation and condescension. I'll be damned if I'll let a scientist, a doctor, a mother, or a government entity patronize or condescend to me. This sinking feeling, the jittery, nervous thing I've got going whenever I even visit this issue which is a lot, lately? It's the feeling of being unheard, of being truly unheard in the face of money and business and the unknowable. It's the feeling of being powerless and ineffective.  It's a mama bear falling out of a tree.

*I've used the image before, and the short piece that it inspired was published online. You can read and listen to it here.

** Read this article by a woman who contacted me today. Read her credentials and look at her research.. Don't Vaccinate to Protect My Cancer Kid

Another Episode of Smells Like Bullshit (because, really, it's been some time since I've smelled it)

I'm shocked, shocked to find that gambling is going on in here!

Captain Renault in Casablanca 

I contacted the writer of the article in National Geographic to ask her why it had disappeared from the pages of the website, and she wasn't aware of it. She evidently contacted her editor who checked and claimed that "the article was dumped while working on the web design."

I'm going to be honest, here. 

It smells like bullshit.

All the other articles in the series about vaccinations are still up on the site (the one about our story was published on February 14, 2015)

The Anti-Vaccine Generation: How Movement Against Shots Got Its Start

published on February 6, 1915

Why Do Many Reasonable People Doubt Science? 

published in March 2015 issue

Measles Are Back: Key Questions and Answers on Disease, Vaccinations

published January 23, 2015

and so forth.

I also can't find the conversation that was on the National Geographic Facebook page. Last time I checked, it had over 350 shares and thousands of comments, many of them the usual ugly.

Reader, what do you think?

I'm thinking about burning some books.

Silenced?

So, about a week ago a few people contacted me to ask what had happened to the National Geographic article about our family's decision to delay the vaccinations of our sons. When you click on the links, the page comes up blank. I saw many hundreds of comments on the National Geographic Facebook page, and they weren't pretty. I can't find them today. I reached out to the writer, Karen Lowe, and she wasn't aware of it but told me that she'd check.

I'm wondering what's up, imagining that The Powers That Be don't want a story about a family who makes responsible but controversial decisions about their children's health on the sacred scientific pages of National Geographic. I could be wrong, though, and just another insane, stupid, immoral and irresponsible anti-Science conspiracy theorist.

Interesting.

Thoughts on Citizen Science and Public Good

This afternoon, just a few moments ago, as I cleaned up my twenty-year old daughter after a diaper change and prepared to draw up a syringe of cannabis for her afternoon dose, I was struck by the irony of listening to a certain Citizen Scientist over on the National Geographic comment page demand accountability and responsibility from the public, namely me, Irresponsible Citizen Numb-skull. I wondered, not bitterly, mind you, because we all have our issues, whether she might extend her civic duty (enthusiastically getting those 49 vaccinations and protecting the herd through strict legislation) to helping me out over here. I'm thinking she could take a stint at changing those poopy diapers every day for at least a decade, and during constipated times, she could do some telephone work (waiting begets waiting) and cajolery. I could certainly use help with insurance co-payments as well, and whoa -- let's not even get into all the things she could do when Sophie ages out of the school system. Stronger minds than my own flail at that prospect, so I imagine a really altruistic and responsible person like herself could come up with some solutions!  I'd even give her a turn at darts when we visit The Neurologist and try to decide what medication might work best should I be unable to keep getting the Unresearched-Enough Cannabis.

Even numb-skulls have dreams.

Vasquez Rocks on Aqua Dulce Road with Sophie

I took Sophie to Vasquez Rocks, off Highway 14 today. The park was on the sweet-sounding Agua Dulce Road, in the Sierra Pelona Mountains, about forty-five minutes from my house. I've lived in southern California for more than seventeen years, but I'd never been to this strange and majestic place. Not only a prehistoric site for the Shoshone and Tataviam peoples, I learned that the rock formations were used by California's most notorious bandit, Tiburcio Vasquez, to elude authorities.

I feel a little like eluding everything and everybody these days, particularly certain smug and citizen scientists on the internets. I imagine that if Sophie could talk or do anything more than hobble around with me, she'd be up for eluding people as well.

Given her inability to navigate, Sophie and I didn't see much of the trails that surround the rocks but we did have spectacular views. I let go of her for one moment to take the above photo, but visions of her stumbling and smashing her head made it only a moment. At the same time I realized with gratitude that at any other time in her life, I would have worried that she'd have a seizure and that I'd have to carry her back to the car or lay her down in the dirt until she was able to walk again. Trying cannabis last year despite the medical world's admonitions against it was a bit like eluding the authorities.

We sat under the shade of an over-hanging rock at one point and watched families scrambling up the sheer faces of the rocks ahead.

Hawks circled in the sky. An older Asian man sat down next to us, and the three of us sat, completely silent, in awe.

I carried on a conversation nearly all morning, in my head, with the citizen scientist on the internets who is so adamant about my "ignorance." A friend had emailed me that he'd looked her up on Facebook, described her to me, even down to the clothes her children wore. It's a strange, strange and big, big world.  I'm grateful that this woman's language, with all its intimations of fear and control, was finally silenced in my head by what I saw at Vasquez Rocks.

As Sophie and I wandered around where we could, I realized that I have no desire to climb to high places, to scramble up rocks and perch on edges, even if Sophie were able to join me. This afternoon, I had to look down and ahead, guide Sophie through some rocky spots. She looked down some of the time but rarely up. I wonder if she's oblivious and then I wonder if she's just soaking it all in. The breeze running through the scrub made branches sway gently, and that's what caught her eye. I pulled her onto my lap on another rock and rested my chin on her shoulder. I tried to imagine what she saw, what she thought, her language, her mind's eye.

It occurred to me that the constraint of walking and being with Sophie gave me the opportunity to not aspire to something else and that the thrill was in the eye, her eye, my eye -- not so much beheld but beholden.