NOTE: Cathy often ends her post with music. When I read this post in preparation for publication, I immediately thought about this powerful scene from Sex in the City - where Samantha (the bad girl of the show) gets REAL during a breast cancer benefit. She speaks out, breaks the taboo of the reality of cancer. It's at the end of this post. There's a  moment of salty language. This is how I envision Cathy, and so many other women, including myself, for DARING to confront the myths and bullying that surround vaccine choice. STRIP OFF YOUR WIG and TELL THE TRUTH.  The anti-vaxxer?  SHE'S ME. SHE'S YOU. XOX Kim

Cathy Jameson

A friend sent me a message a few nights ago asking me to check out an online conversation that was on one of her social media pages.  I told her sure, I’d check it out.  I was just about to serve dinner, though, so I quickly opened the conversation knowing I’d have to come back to it when I had more time.  Scrolling to a woman’s comment that my friend wanted me to look at, I leaned back in my chair.  Ahh, an online conversation about vaccines.  Do I really want to jump in?  I’ve shied away from joining in on friends’ social media posts beyond sharing a “like” or “favoriting” something they’ve posted.  I’m in full support of their efforts when links about liability-vaccines, autism, parental rights, and protecting existing freedoms begin thoughtful conversations, but I don’t know their friends or their friends’ beliefs.  I’ve walked into too many hateful one-sided online conversations with complete strangers.  Whatever I try to share with them – even if it’s a link straight from the CDC saying that all vaccines come with risk,  is somehow turned against me.  At quick glance, I could see that the conversation my friend invited me to join could be heading in that same direction. 

Subjected to more hate than reason, I haven’t wanted to chime in on conversations on other people’s pages as much as I used to.  But this friend reached out to me specifically, and I fully trusted her to help back me up should things turn ugly.  So, after I read the other person’s comment, especially when they asked Why someone would walk completely away from vaccines?  Why when we know they work! I decided to say something.  I couldn’t answer her right away.  Dinner was ready.  But I told myself that if the tone of the thread didn’t change before I came back to the computer, I would leave a ‘one and done’ reply.  I’d get what I needed to say in one sitting.    

I wish I’d thought to save the original post and the questions that person was asking, but I didn’t think to.  Besides wondering what turns someone into an “anti-vaxxer”, my friend’s friend wondered if some sort of testing could be done since she’d [paraphrased] heard the media say something about autism and vaccines and something about underlying conditions.  Prior to that, she’d mentioned that a medical test ordered for her son revealed a condition she didn’t know he had.  When I read that I thought, If only parents of vaccine injured children had that option—some sort of test prior to vaccinations that would show if the child was susceptible to vaccine injury—if we’d been offered that, maybe some of us wouldn’t be raising medically fragile children like we are.  I was happy that she’d found appropriate treatment after that testing, but then my emotions changed.  Going back to how important vaccines are, the woman stated that she’d risk for her son the minute vaccine side effects because she’d rather an autistic child than a dead child. 

I do so wish I had her exact words to share because the first question she asked is a common question, Why would a parent choose not to vaccinate?  The media likes to label people who choose not to vaccinate as “anti-vaxxers” completely forgetting, or purposefully ignoring, that many of us made the decision to not vaccinate based on what a vaccine did to our children.  We did vaccinate.  We did follow the schedule.  And we did so without hesitation.  Now a derogatory reference, using the term “anti-vaccine” is meant to divide.  Being labeled “anti-vax” also means you are stupid, irresponsible, and the cause of current outbreaks, and potential future ones, according to pro-vaccine groups and politicians and the media.  The woman from that online conversation needed more information because most of the people I know who the media, and now the public, label as “anti-vax” are far from stupid. 

Understanding the vaccination process, knowing the legal ins and outs of the US vaccine program and vaccine law, and realizing why it’s important to know more than what the media and doctors say is true, “anti-vaxxers” are more qualified to speak on the subject of vaccines than those being paid by the industry are.  Moreover, none of the “anti-vax” people I know have superpowers to willy nilly infect anyone with diseases or illnesses.  They, as well as the unvaccinated, cannot spread diseases they do not have.  That’s just not possible.  So many misconceptions surround that term and the people labeled as such, which prompted my friends’ friend’s next question, What turns someone “anti-vax”?  While I don’t have her part of the conversation, something told me to save mine.  So, I did:

I can't speak for all "anti-vaxxers" who choose not to vaccinate, but I can share a bit of our story.  I was once pro-vaccine. 100% for them.  It wasn't until after my child suffered an adverse event that I changed my outlook on them.  What I was told couldn't happen to my son happened: he was injured by a vaccine. After that discovery, I started to finally read about vaccines instead of taking what our providers were saying as gospel truth.  Believe me, I did not want to walk away from them or from what I'd been told my whole life, that vaccines were only safe and only effective.  But the more I read, the more I learned.  I learned that all vaccines come with risk, that they were not studied as the CDC says they've been, and that for some people like my son, they can do more harm than good.  Side effects and adverse events were our reality - not better health or protection from diseases (yes, we've tested this and know that the vaccines did not work).  Our doctors could see my son decline post-vaccination and could read what the tests said, but refused to help and only pushed for us to get more shots.  I said no more.  My son could obviously not handle them, and I was not about to continue to follow the vaccine schedule that they and govt presented.  Our docs couldn't give me a guarantee that vaccines would work just as federal agencies that oversee and promote vaccines can't.  Today, my son still deals with the negative result of the vaccines he received, and not minute issues either.  Seizures, loss of speech, GI problems, gross motor delays, fine motor delays, ataxia, and other medical issues he didn't have prior to vaccination are an everyday part of life.  I'll add one more thing since you mentioned it - it isn't just about autism that concerns some parents.  It's side effects like intractable seizures, loss of acquired skills, infertility, anaphylaxis...and these days, it's also the trampling of parental rights like having the choice to say no thank you to a liability-free pharmaceutical product that comes with risk that are waking people up about vaccines.  And if you really would rather an autistic child over a dead one, you have so much more to learn.  Being "anti-vax" was not a choice I ever intended to make.  I was forced into that role.  Now that I know what I do though, I only wish I'd made that decision a little bit earlier.  I wish you the best.

I waited for her reply.  None came that evening.  No response was there the next morning either.   

Did I plant a seed that “anti-vaxxers” are real people and not some bogey man monster type that the evening news says we are?  Did I jolt her into thinking beyond what the media is telling her to believe?  Did I stir things up just enough for her to stop and think how callous and rude she was to say that she’d rather an autistic child than a dead child?  I’ll never know.  That’s because after I left my reply, part of conversation on my friend’s page was gone.  So was my response.  Later the next day, my friend reached out to me thanking me for sharing what I did and confirmed that our little convo was gone.  She didn’t take it off her page.  I didn’t take it down.  It had to have been the other woman who deleted it. 

Initially, I had planned on writing a much shorter message to this person, but when I reread what she’d written, I got upset and my reply grew longer.  Rather a child with autism than a dead one??  How dare she say something so crude!  While my “anti-vax” friends don’t have superpowers, some have lost their child post-vaccination.  Proven to be a result of vaccines, that child mattered.  How that child died matters, too.  Those parents who’ve lost their children are sometimes also called “anti-vax” for suggesting to new parents to ask more questions than they thought to when their child was alive.  They are parents whose child died after participating in the vaccine program.  How is wanting to help someone avoid what they could not be seen as anti-vaccine or anti-science?  It isn’t.  These parents deserve more respect than they are given, and my heart aches thinking about the incredible loss they will forever feel. 

So, who exactly are the “anti-vaxxers”?  We’re people who believed in vaccines.  We’re Americans who trusted the government thinking they had our best interest in mind.  We’re parents who did exactly what our doctors told us to do.  We’re mothers who watched their child get sick and then sicker.  We’re fathers who regret not knowing enough, reading enough, or asking enough before it was too late.  We’re the ones who took one for the herd.  We’re the ones whose children have suffered irreversible side effects and whose children have died post-vaccination.  We’re the ones who know that pharmaceutical companies have better legal protection than vaccine consumers do.  We’re the ones who now know too much to be silent.  Call us what you want, but calling us “anti-vax” won’t stop us.  It hasn’t yet.  I can think of a few other words that better describe us – driven, educated, vocal, but if you want to use that term “anti-vaxxer” know that it’s much more than the canned description the media overuses when describing parents who think to question vaccines and who stop vaccinating altogether.  

I hope before my message was deleted that I offered a satisfactory response to what that woman asked in that online conversation last week.  It was clear that she was pro-vaccine, which is her right, but she believed the misinformation the media and mainstream medicine have said about informed parents like me.  While I could’ve shared more details about my son’s injury and more about why I walked away from the US vaccine program, I kept my message to her simple:  Being “anti-vax” is a way of life that includes protecting my child, preserving my freedom to choose, and supporting her right to choose as well. 

Cathy Jameson is a Contributing Editor for Age of Autism.