Wednesday, July 29, 2015

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:


  1. It was a very good article. I understand your reaction to articles which make you feel so sickeningly ignored or disbelieved. It compounds infinitely the wrong that occurred to Sophie. And to you and your family.

  2. I shared it on my FB page and, despite the fact that I often get at least a few likes and some comments on all of my posts, this one has gotten nothing as of yet. Not that I'm surprised, but I do so wish that the people I know well enough to be FB friends would be willing to have a rational conversation about all of it instead of pretending it doesn't exist. Or maybe I don't wish that. Maybe their silence is the best I can hope for, under the circumstances.

  3. I've been thinking about veterans day and memorial day and have been wondering why we don't have a vaccination injury day to say thank you.

  4. This comment has been removed by a blog administrator.

  5. I've been thinking about veterans day and memorial day and have been wondering why we don't have a vaccination injury day to say thank you.

  6. Thank you so much for sharing this invaluable information about vaccine injuries.

    We often feel so isolated by our burden - a child who was destroyed by the MMR and is now profoundly disabled in every way imaginable. We haven't been able to locate a single doctor here willing to testify in court on our behalf about the connection between her vaccine and the start of the start seizures even through we have the time link between the two. Our lawyer says that without local expert testimony we can't sue anybody.

    In the US, we would have been compensated by the Vaccine Injury Compensation Program. Here, a similar program exists. But our lawyer once told us that it has never, in over a decade of existence, compensated anybody! That's because standard of proof of causality is higher than the one required in court. In the U.S., of course, it is lower.



Related Posts Plugin for WordPress, Blogger...