Pro-neurodiversity, pro-vaccines, pro-disability rights, anti-cure.

Now Katy doesn't want to live in Smithton anymore.

Thursday, August 18, 2011

On Making a Meaningful Connection Through Writing

I seem to have attracted some attention lately and I've decided that I should write a blog post about it.  Some of you who are Facebook friends with me may know that I am, in addition to being a neurodiversity advocate, a strong supporter of vaccination and a regular poster on the Jenny McCarthy Body Count's Facebook page.  For those who don't know, the Jenny McCarthy Body Count is a pro-vaccination website run by my awesome friend Derek Bartholomaus.  Derek takes time out of his busy schedule to count all the people who have become ill or who have died from vaccine preventable illnesses since Jenny McCarthy started her anti-vaccine crusade.  There is a fairly active community of regular posters on the Facebook page for JMBC, and Derek and his other fans have been very kind and welcoming towards me.  Occasionally antivaxers will troll the JMBC fan page, but unless they are spamming or being abusive Derek does not ban them from conversations.

I enjoy arguing with antivaxers on this page.  I don't know why, except that it helps me blow off steam.  I feel that antivaxers have done a lot of damage to the image of autistic people and that they have made the world a worse place to live in, especially for autistic people like me.  Every so often one of my posts will get lots of "likes."  When I write something that a lot of people like I usually get between one and three private messages or friend requests.  I'm not sure if I'm as impressive as some of these people think I am, but the amount of praise I get from Derek's supporters has made me feel very comfortable in the pro-vax community.  And I try to be humble, so I almost feel like I'm being too self-congratulatory admitting this, makes me feel really good when people tell me how awesome I am.  Like, I sit in front of my computer blushing and I have to hold myself back from repeating all the messages I get to my friends, because I know it's really annoying when people are all, "Look how awesome I am!!!"

But I'm not writing this to say how awesome I am.  I think I'm a good person.  I think I'm a decent writer and that I'm interesting, but I don't think I'm that incredible.  I like attention, but that's not really why I write.  It really honestly touches me to hear that some of the things I write resonate with people, that so many people identify with my words, and it's usually not when I'm trying to show off.  It happens naturally in an unplanned way, and it's a very powerful and special feeling that I get when I realize that I have made that connection with someone.  It's not like pride or happiness or anything like that...I just feel grateful that I am able to make this connection, and I'm in awe of the way words have a power to make people feel this way.  It's not about my ability to write or their ability to write.  It's about this nearly inexplicable feeling that comes with making a meaningful connection with someone in a completely pure and honest way.  It's a feeling that is nearly metaphysical, one that's beautiful, and I want to share it.

That happened again today, on a much larger scale than normal.  Last night I looked at the Jenny McCarthy Body Count on Facebook to see if there were any new responses on a post there I had commented on a few days before.  And lo and behold, there was an antivaxer accusing me of believing only what my doctor told me, of not doing any research on my own.  She told me she knew of three people whose children had instantly changed from the MMR vaccine, that she knew a woman who got diabetes from a vaccine.  And I responded, explaining how I came to believe in the effectiveness of vaccines, why I do not trust antivaxers, and why making a tragedy out of autism is harmful to autistic people. 

And then something happened.  I got more likes on the comment than I usually do.  Then I was got several friend requests and several messages from people who identified with the comment.  Derek shared it on a note on JMBC's page and said that it was one of the best comments he had ever seen on the page.  (I am flattered and appreciate his compliment, although I think there have been many comments that were better than mine.)  A woman I met online through JMBC named Martine O'Callaghan wrote a blog post about how my comment had affected her.  I was pleased that she thought what I wrote was interesting enough to merit a blog post, but when I read her post I could barely believe that she had chosen the post as the first blog post she had ever written.  I have never felt quite as humbled and grateful for the reception I have received from this community, and for their support for my beliefs and the stories they have shared with me.  I am grateful that I was able to have this experience, and I hope I will have the chance again. 

The comment I wrote, as I wrote it, with spelling/typing errors and all:

Kathryn Bjørnstad: ‎@JustinValerie, there has never been a case of autism related to vaccines. Ever. The three people you say had their babies get autism from vaccines have no scientific proof the babies’ autism was caused by vaccines. If they did actually change within a few days or weeks, you’d expect a doctor to note that in charts and you’d expect them to prove their cases. Historically when something is discovered to be harmful and cause things like diabetes or cancer or developmental disabilities, you see the substances are banned or restricted (like DDT and Agent Orange), come with strong warnings on the labels (like alcohol and cigarettes), or have a doctor-backed campaign begging people not to use them (like fattening food). You don’t see a whole lot of doctors and scientists begging people to smoke and eat food that’s bad for them, because they don’t want to advise people to be unhealthy.

I assure you, as an autistic person I am extremely invested in researching the antivax community. I’ve studied a whole hell of a lot of evidence that didn’t come from my doctor. I have read the Lancet paper written by the former Dr. Wakefield who abused children with the same disorder I have. I’ve followed his case. I’ve followed information about all of the major figures in the antivax movement. I’ve read what they wrote. They have never been able to convince me to believe in a global conspiracy where evil doctors give people unnecessary shots knowing that it’s making people ill. They’ve never been able to convince me that the shots are unnecessary, or that they make more than a tiny fraction of people ill.

I’ve read stories about severe vaccine reactions and I know a couple people who have had reactions to vaccines. I know people who have become seriously ill from vaccine-preventable illnesses. I have seen what these diseases do to a healthy baby, and believe me, you are not more likely to get measles from a vaccine than in the community if you live in Africa, where children die every day from the measles. When I look at things written by antivaxers I see they have absolutely no proof, only a lot of conspiracy theories and speculation. Many of these people are so ignorant about science that they don’t understand how vaccines work or how the progression of science and cancer occur. Saying your friend got diabetes from a vaccine because she happened to get vaccinated some time before her diagnosis is like saying her hair turned gray because she stubbed her toe that morning. One thing has nothing to do with the other, and it sounds extraordinarily silly to suggest otherwise.

As for autism, it is typically noticed at an age where most children are developing social skills. This happens between the ages of one year and two years, so doesn’t it make sense that it happens then? It even happens in children who aren’t vaccinated. And it’s not so much a matter of it being triggered so much as it just becomes noticeable that something is “wrong” about that time. Autistic people are also known to spontaneously lose skills. I know an autistic woman who didn’t speak until she was a teenager, spoke for about two years, and then lost her speech again. She blogs and communicates by text-to-speech programs. I personally experienced a change in my abilities when I started puberty. It’s frankly not that unusual for an autistic person to suddenly fall behind, but it doesn’t mean they’re just becoming autistic.

Meanwhile, Jenny McCarthy uses my condition to frighten people out of their health and into buying her craptastic books. The antivaxers, in addition to being wrong and in addition to causing a resurgence of vaccine preventable illnesses in the US, have also made the world a worse place to be autistic. They have convinced people that being autistic is worse than being dead, that autism is the biggest tragedy in the world, that autism tears apart marriages (despite evidence to the contrary) and that autistic people are mere shells of human beings. I’m sorry but I really don’t appreciate that. I don’t appreciate seeing people like me blamed for their parents’ issues by virtue of being autistic. I sure as hell don’t think it’s better to be dead than to be autistic, and that kind of thinking has led to the murders of many autistic children. I reject the tragedy model of disability and I object to any characterization of autistic people as broken, useless, unwanted, or unhuman in anyway. Our lives still have value, and there is no reason antivaxers should feel the need to downplay our humanity in order to explain that autistic people have different needs than neurotypicals. But when a parent murders an autistic child, Age of Autism defends them in a way they would never defend the murderers of neurotypical children. In conclusion, the antivax community is dangerous to public health, ableist, and prone to bizarre reasoning and leaps of logic that Evil Knievel couldn’t make. I really see no reason to abandon science, logic, and my own health for that.


  1. You really are THAT incredible xx

  2. I think you're pretty great, for what that's worth. And it is a wonderfully composed facebook comment.

  3. Found my way to your blog via the post you made, which got shared, like, everywhere! My husband takes Jenny McCarthy books and hides them in "true crime" and "fantasy" sections...

    Several of my cousins have Aspergers and they are wonderful people and I would change them for the world. People who portray autism as a terrible fate therefore really hurt me. People like you who pwn antivaxers make me very happy!

  4. Well Done!!! Our son has autism and is an amazing little boy. Would not change him for the all the money in the world!!! Just the other day he pushed a bicycle around. A week later he got on it and ride it!! No stabilisers or help. Amazing!