I received an email today noting my recent absence from my blog, asking if I was OK. (The sentiment was much appreciated) I realized that I had neglected my obligations/opportunities here, so I am taking some time today to talk about The Canary Party. I have been too busy doing the Canary Party to write about the Canary Party, so apologies for taking so long to update my blog readers.
I have become the Executive Director of the newly formed Canary Party.
Wanna know how a trusting and naive young mother becomes a political activist? Read this blog from the beginning and watch the evolution.
If you dial back to the beginning in 2004, it was just supposed to be a little mommy blog to document a largely untested autism treatment so that I could keep a record of Chandler's progress, and so that parents considering the therapy could read about what was and was not working for us so they had a little more information to go on in their decision making process on what treatments to invest their time and money in to get the best outcomes for their little ones.
As Chandler begin to improve, I ran into something that I never expected. Bad Faith.
I assumed that when my son was diagnosed with autism, that the professionals around him had gotten in their respective businesses to help children like mine. Why get into a business where part or all of your job was supposed to be helping struggling children unless you really cared about helping struggling children? Right?
It only took about a month before I ran into my first bad faith encounter. With my pediatrician.
In my trip to autism book land, I got a copy of "Children With Starving Brains", thought... "wow... that is my child!" and started Chandler on the GFCF diet. With in 48 hours he was making eye contact, answering to his name and had the first normal bowel movements since his first dose of the Hep B vaccine as a newborn. (He had been constipated his whole life and my doctor taught me that that was normal.) I was VERY excited about this development, and called my pediatrician to tell him what had happened.
But my ped's reaction was odd. When I told him the story, he said something to the effect that he had had other autism families that had tried it, but they didn't really see any changes on it. That confused me a bit, because I didn't really see the point of those other families experiences, because this was already working for MY son. So I explained that... "OK... but it IS working for Chandler." I kept waiting for him to say, "That's great, come in and we can talk about what this means for him and where to go from here," but instead I got another blow off.
At that point, I honestly thought he just didn't hear me or wasn't paying attention because he was having a long day or something, so I repeated the story and got the same odd reaction. After that I just got off the phone.
It took two more encounters like that with him before I just decided that he didn't know what he was talking about and to find one of those DAN! doctors to deal with the autism stuff, and just use my ped for check ups and sick visits.
I didn't have the experience under my belt at the time to recognize the bad faith then, but I think back on all our conversations since then, and that man had to work his butt off to ignore all the things I have told him over the years. He never had any intention of dealing with what was happening, because, of course, all that was happening implicated him in causing my son's autism.
As Chandler got better, and I got excited about sharing his progress on biomed, I found more and more bad faith players. I made the oh so naive mistake of thinking at a middle aged physician using an internet moniker to mock doctors he didn't like might actually have a good faith conversation on autism causation and treatment. I thought the American Academy of Pediatrics would want to know about treatments that make struggling kids healthier and would want to reform their practices and policies to prevent neurological damage to children. I thought that the Centers for Disease Control and Prevention would actually want to Prevent and Control Autism. This blog is a long history of all the people I took at their word when they said that they wanted to prevent autism and serve those who have it.
It took me a full year of making excuses for all these bad actors, of thinking... 'well if they only knew that______ then things would change quickly' and 'I am sure that they will want to sit down and look at all this amazing information any day now' and even 'If they would just talk to us face to face and see our kids videos, the will see we are not crazy people and the dialog can begin'... and then CDC et al ignoring David Kirby's book, that I finally started to think... 'oh... maybe they know all this and don't want to deal with it'.
By the end of 2005 it was pretty clear to me that they didn't want to face the problem, but then I thought, "well... as the public becomes aware, they will have to deal with it". Skip to 2008 where Jenny McCarthy and the Polings made the whole world aware of the problem, and yet STILL no good faith actions on the part of those responsible.... And then to 2010 on the "Wakefielding" of Andrew Wakefield, and then the Super Double Skapegoating of Wakefield again in 2011 just for good measure....
Well at this point if we don't declare these people working in Bad Faith, then we are just morons and we get what we deserve. That is all their track record shows, for much longer than the seven years that I have been documenting these issues.
And when we look around us, we are only one of the groups that is being treated like this. Families struggling with cancer, lupus, chronic lyme disease, chronic fatigue, diagnosed mental disorders, and dozens of other problems, they are getting jacked in one way or another by abuse and neglect from the medical establishment.
It is time to call a spade a spade and say outright that corruption in the medical establishment is rampant, that power and profit motives are being served at the expense of patients, and it is time for the corruption to be cleaned out and for the abusers to lose their jobs.
We have to separate the wheat from the chaff, remove those bad faith profiteers posing as health professionals and replace them with people of good faith, actual healers, who do their jobs.
We know who the bad faith actors are. We pretty much knew it after our first encounter with them, but pushed it off and waited for them to prove it 20 or 30 more times over before get around to asking that they be replaced.
But as we have learned that our good faith and reasonable "asks" are just ignored (and sometimes mocked). It is now time to DEMAND the medical system change, or change it ourselves.
Thus is born The Canary Party.
Let's face it... we are pretty much one issue voters already. Time to mobilize all of us who are getting screwed by private medical industry and public health, fire the politicians who are keeping them funded and in power, and put in men who will clean house.
The definition of crazy is doing the same thing over and over again and expecting Paul Offit and Kathleen Sibelius to change.
So this month I move from my role of pissed off mom to professional activist and paid politico, as I become the Director of Operations for the infant Canary Party. (Or maybe the Director? Is Director of Operations to wordy? Who cares I guess... I will think of a better title later)
So a few changes in the way we will be taking this on.
First off... I am now all about breaking ties with people who act in bad faith. The liars, the stallers, the cover up ers, the admittedly biased, those in denial of their bias, the attackers, the mouth pieces, the proxies, the mockers, the useful idiots, the parrots, the industry protectionists, the PR firms, the bullshit artists, the purchased politicians, the blackmailed politicians, the lazy politicians and most of all, the people who can't take things seriously because they want to be 'cool' so people to like them.
For years I have been asking the question, "18% of the population has a developmental disability or delay, and that does not include allergies, asthma, diabetes and all the other childhood epidemics we are seeing... So how many healthy children are left?"
Two weeks ago we got our answer. Less than %46 of the children in our country are typical, healthy children.
Take the time to go read the abstract of that study. They looked at more than 91,000 children in all 50 states and found that most of them were sick, delayed or obese. And they didn't even look at all illnesses. They just picked 20 common chronic health conditions, then added in obesity and developmental delay. For example, cancer was not even considered in this study.
But what is doubly shocking is not just the number, but the lack of alarm by the researchers! The current health care system is failing our children abysmally, and their solution for these kids? MORE ACCESS TO THE HEALTH CARE SYSTEM!!!
When half the cars coming out of a mechanic's shop are not working, on what planet do authorities say, "Well clearly you need to send your car back to that shop and pay them to fix it." ?????
In the real world they would be at least out of business and at most under investigation for fraud!
A baby born today has less than a 50/50 shot of being a normal, healthy child. Sick is actually now 'normal' and healthy is the minority. (Any one wonder what it means for a society when half the population is financially or other wise dependent on the other half?) And it is only getting worse. The sky is actually falling and the medical establishment does not care or even seem to notice. Or is it just good business for them? Have they become that corrupt? How do we find out?
Well that starts with a congress that will actually give a damn about health outcomes over Pharma campaign donations. And that is what we can to do something about.
This is a patients rights movement and a movement for the right NOT to become a patient.
So take a stroll over to the Canary Party site, read our founding documents, and send it to all your friends. Autism friends, but more importantly, anyone struggling with a chronic health condition or who is concerned about plummeting human health. Sign up and start spreading the word.
We are currently organizing in 25 states, and hope to have active teams in all 50 states shortly.
And a note to all those concerned with all the usual bad faith players. A few people have sent me comments dropped around the internet by those usual suspects on what they think of CP (which is a little funny to me as CP has not actually done anything yet... but whatever) and I want to let people know that honestly... I could not care less about the opinions of those who have been acting in bad faith with our community for years. OF COURSE they are going to say nasty things about The Canary Party. We are a threat to the cottage industry of shouting "ANTI-VACCINE" when someone points out that HHS claims that vaccines can cause brain damage and even kill some children. I was reminded of the depth and wisdom of their thoughtful prose when someone sent me a link to that old doctor's article on us. I quit reading when I got to the place where he noted his opinion that our web site was the color of "piss".
No one wants medical advice and treatment from people who display that level of anti-social behavior, and I am now less open to getting tied up on the ropes with these individuals that I was when I wrote this in 2009. Our party is about exposing corruption and abuse, so the corrupt and the abusive will be coming at us with teeth barred. To be frank... I just don't care any more. Let the dogs bark.
However, if one of our critics makes solid point about somewhere we are off or something that we have done wrong, please let me know so that I can get it addressed properly.
A few more housekeeping notes. I probably won't be blogging here very much. At least for the rest of the year as we get geared up.
Those of you who know how much I love lengthy phone conversations and wordy emails, please don't be put off if our conversations and missives become rapid fire. If you email the main canary party email you will get me. I am racing to keep up with the pace of things, so please don't be offended if I seem short. I am just in a hurry a lot these days trying to organize a few thousand of my closest friends. ;)
If you have questions, please ask. We have hit the ground running and everything is still in process. I am trying to get information out as quickly as I can, but don't want to get carts before horses, so if you feel an information vacuum, shoot me off an email.
I will answer everything, but bad faith communications will, of course, go to the back of the line.
So my friends... time to get bold and get our medical system back on the tracks. See you at The Canary Party.