Mistaking Criticism with Mockery

Some months ago, I wrote a blog post describing the takeover of an anti-vaccine Facebook page by a pro-vaccine activist. The takeover was a thing of beauty, and it revealed the weak constitution of so many anti-vaccine types. Well, someone found my blog post and posted it on an anti-vaccine Facebook group (a different one from the one that was taken over), and they claimed that I was making fun of parents of autistic or “vaccine damaged” children.

Mind you, I never mentioned children in the blog post.

It has been my experience that when people are hurt, they lash out in unreasonable ways. The anti-vaccine activist who believes that their child was hurt by a vaccine will lash out against vaccines in all forms, even when there is no evidence or evidence against it. They’ll lash out against the medical establishment that promotes vaccination. They’ll lash out against anyone who ever was associated with the creation, development, distribution and giving of vaccines.

Lashing out is the natural thing to do for a parent. I know it. If anyone even looks at my child in the wrong way, my hackles are raised… One day, we were in New York City for a conference. Although Baby Ren was only a few weeks old, we decided to make the trip anyway. As I walked downstairs at the hotel into a very crowded dining area, one of the other guests looked at her and sighed because they couldn’t get into the elevator with us. (It was that small.) I am not joking when I tell you that all sorts of signals were launched in my head.

When I was a child, mom and dad separated and went their different ways. One day, in the middle of an argument, dad told mom that he would sue for custody of me. In no uncertain terms, mom guaranteed dad that he would go missing and never be found if he dared take me from her. “Your mother will know my loss, and it will eat at her forever not knowing what really happened to you,” my mom said. Dad’s face was one of horror. He never threatened that again.

Likewise, if anything were to happen to my child, I guarantee to you that I will lay waste to the world. I’m not joking.

So what is this blog post all about?

A few days ago, Orac wrote a blog post about quack treatment for cancer at a clinic in Mexico not helping a little girl who eventually died. I may be biased because I like Orac — I look up to him both personally and professionally — but I didn’t see anything in that blog post mocking the parents of the little girl who died. If anything, he wrote this:

We can only imagine, and the parents are brave and determined. They go to incredible lengths to raise the vast sums of money required to get their children treated in Monterrey and are there with their children every step of the way, like Annabelle Potts’ father. It’s that inspiring parental love and devotion that Drs. Garcia and Siller take advantage of.

And he closes his blog post with this:

I end this post, as I end all such posts, by emphasizing that I am not criticizing the parents, who clearly love Annabelle Potts with an intensity that led them to go to incredible lengths to save her life. No child deserves this fate. No family deserves this fate, and I have nothing but sympathy for them. I am, however, calling out the quacks, Drs. Garcia and Siller, for taking advantage of that love by selling false hope to the tune of $30,000 (AUD) per treatment, not just to the Potts family but to dozens of families. I’m calling out the media for hammering all these stories into the same narrative of loving families who had been told to “take their child home and make memories” but refused to give up and instead found an “experimental” therapy, while either not mentioning or very much underplaying the utter lack of evidence for the therapy. Indeed, I just saw another example the other day using that very narrative for Lucy Moroney and Edie Molyneux, both of whom were treated in Monterrey for DIPG and died recently. (They reporter even described Dr. Garcia and Siller’s treatment as “revolutionary” and “pioneering”!) I’m calling out the crowdfunding platforms that make stories like that of Annabelle Potts so depressingly common these days. I’m calling out media outlets who then spin the story of the child’s inevitable death when it happens into a tale of triumph, rather than what it is, the story of a family victimized by unscrupulous doctors.

But it doesn’t matter because it appears that the mother of the little girl, or at least people claiming to be the mother, all up in arms about Orac’s blog post. They accuse him of taking advantage of the little girl’s death, of their loss and grief:

“So it appears David [Orac] has removed the other article as the comments weren’t going in his favour… Who is more unethical, the doctors who treated my daughter without transparency, or the ‘doctor’ who exploited my daughters death for his own personal gain?”

I don’t see how Orac is “gaining” anything from pointing out the quack treatment the little girl got. (Here is another blog post on another blog with the same information, and zero mocking of parents that I could see.) To be honest, I was a little incensed at the amount of vitriol being thrown at him for writing that… But then I realized that these are parents who just lost a little girl.

I realized that they’re probably in the process of laying waste to the world.

It doesn’t help that the cancer the little girl had is basically incurable. All the science and technology that the West (the girl was from Australia) has to offer doesn’t do much good against that cancer. Worse yet, according to reports, the parents were told to say goodbye to their little girl at the same time that the quack clinic told them that there was hope. As a parent, which would you take?

Me? I’d go the lengths of the Earth for her.

What about all the other people who are not the girl’s parents? They’ve seemed to have piled on, mostly without reading either blog post about the situation. What’s their goal? What’s their gain?

See, this is why it’s hard to have reasonable discussions on things that really do matter. The thing that matters here is that there is a clinic of quacks in Mexico that is taking money from hopeless victims of cancer and delivering nothing back… Well, not “nothing” if you want to say that false hopes is “something.” People who do that to children with cancer and their parents should be punished to the fullest extent of the law in order to deter others from trying the same shenanigans.

But no. We’re left here trying to defend a blogger scientists who is bringing this out to light from people who misread and misinterpret his writing, adding to it more than is already written. I know the feeling not only from interactions with antivaxxers but from interactions with jerks… And there is nothing sadder than to see the legacy of a lovely little girl be that of jerks commenting off the cuff.

I hope the cooler heads prevail.

The criticism that you’ll get

One of the things that I’ve been working on this term is to prepare my doctoral thesis/dissertation proposal. It’s a somewhat complicated document that must meet the requirements of the school, be in a grant application format (or close to it), and clearly explain what I plan to do. It’s a fine line between being too detailed, losing the audience in the process, and being too vague, leaving the audience with more questions than answers on what I’m going to do. To make it just a little bit more complicated, my project is not like that of the PhD students around me. The degree I’m seeking is a DrPH. It’s practice-oriented. It’s about taken knowledge that is already sitting somewhere and applying it to a public health problem. Other projects are about etiological research, which is finding the cause of things and putting that knowledge out there.

The first in a long line of things that will happen once I have made up my mind on what I want to do is that different people at the school are going to criticize my proposal. Then they’re going to criticize what I know and how much I know about epidemiology. And then they’re going to criticize my actual thesis work. It will be a long and arduous process, and it will involve a lot of criticism along the way. Some will be good, constructive, helping me become a better person and epidemiologist. Other will be petty criticism derived from insecurities or confusion. Still other will be meaningful criticism, but one that is not personal at all and may seem somewhat detached from any sort of emotion. Through it all, you will need to deal with the criticism that you’ll get. Continue reading

The entirety of the evidence

It’s been a rough few days for the antivaxxers. The measles outbreak associated with Disneyland has really put them on the spot when it comes to their refusal to vaccinated. Some say that they are protecting their freedom to do whatever they want to their children (aka their “property”). When it is explained to them that they are to do what is in the best interest of their children, they shift the goalposts and say that the vaccine is what caused the outbreak. When it is then explained to them that the vaccine strain is not the strain found in the outbreak cases, they then say that the vaccine doesn’t protect against the strain in the outbreak. They’ll quote CDC documents stating that the genotype of the vaccine is different from the genotype of the outbreak. When it is explained to them that there are different genotypes but that the vaccine covers all serotypes — and, thus, that genotypes and serotypes are different things — they fire back with some nonsense about “big pharma” and/or reptilian overlords.

Our human nature tells us to look for the patterns that matter to us and ignore the others. We’re very biased in that sense. We don’t like to be wrong because we’ve been taught that being wrong is bad. Being wrong gets us in trouble, laughed at, or might even kill us. So we look for the things out there that we can cherry-pick and mold into supporting our assertions. Even when we know in our hearts that we are wrong, we still plow through and try to get others to agree with us. Continue reading

Rabid criticism of the latest book by Dr. Paul Offit

Dr. Paul A. Offit, MD, recently published his latest book, “Do You Believe in Magic? The Sense and Nonsense of Alternative Medicine“. By mistake, I ordered two books from Amazon and got them yesterday. Instead of returning one book, or giving it away, I decided to put it up for auction on my personal Facebook page. Myself and a friend are matching the winning bid and donating all that to the Autism Science Foundation, an organization dedicated to funding scientific studies of autism.

Not ten minutes after I posted the auction there and in a couple of other pages I participate in, a person showed up with the following rant: Continue reading