Autism. Protest.

By Alison MacNeil

On the days I can fit it in, I walk to keep my sanity. While I walk, I listen to all sorts of music. Lately, I’ve been listening to protest songs from the Civil Right’s Movement, things like, “We Shall Overcome and “Oh, Freedom”, I find placing my heartbreak over Nick’s vaccine injury in this context, gives me perspective.

As I walk, my head is full of thoughts about protest and civil disobedience. I remember how incredible it felt to be at the Green the Vaccines Rally.  My imagination begins to wander and I envision myself participating in new acts of protest.

I often wonder if we are getting anywhere with Autism and vaccine safety concerns? I feel two ways about this at the same time.  On one hand, there is not one mom at bus stop #5 in Cambridge, MA that would dare to follow the regular vaccine schedule. I made that change from loads of quiet conversations. This is the work all of us do every single day and it’s working. It really is. I feel it.  Then on the flip side we are so ‘Outgunned’ as I’ve heard Mark Blaxill say. The Autism/Vaccine coverage, or lack there of, in mainstream media is terrible. Even NPR’s coverage is a joke. With television news my expectations are really low and they are met.  With the exception of a few brave voices we are getting no where in the press. Even the NewsHour is letting me down with their recent love affair with H1N1, it’s embarrassing.  When I see this crap the same fiery phrases flash in my head “Now, I’ve really had it” and “What is it going to take?”

This brings me back to my protest fantasies.  I wonder how radical and aggressive, as a movement, we can afford to get without further marginalizing ourselves. Then my head goes stale with thoughts of the all the polite and careful speaking up we do.  When I think about the IACC I don’t want to be polite anymore.  This is my child’s life that’s been ruined after all. I’m entitled to a display of some emotion.  I struggle between the ideas of what actions are too loud and too aggressive they do our cause harm vs. ‘outgunned’.

NPR (bluch!) replayed an interview with Robert McNamara around the time of his death, in which he was talking about his biography and the choices he made in Vietnam.  He told the story of a Quaker man who burned himself alive outside the window of his study in protest against the ongoing Vietnam War. This didn’t cause him to change his view.  My God, what will it take?

What would I like to do?  Right this minute? 

If I were being completely authentic I would be standing in Washington in front of the White House with a big sign and I wouldn’t move. Now my imagination is fueled….you are all there too.  We find a way not to bring our kids because this might get a little hairy.  All of the grown ups; parents, professionals, grand parents, friends ready to end this Vaccine/Autism madness are all standing there too.  I’ll bet there are 35,000 of us. And we are not going to move. We share our water, snacks and coats.  We sing, get rained on and we refuse to move. We may get arrested, perhaps spend a day or so in jail (All of us?)  Now we are getting some press.  I want Nick to have a picture of Mummie going to jail because of what happened to him. What am I going to do?  Show him a picture of me emailing and say “I was so mad you were hurt by your vaccines I was on the computer for years.”

I ask myself if my desire and obsession with protesting is about wanting a break from the tediousness of my regular day?  If I’m not at a Sit-in in DC today then I have to do dishes, work, pick the kids up from school.  No, (well, a little) but, no.  It’s because my son got brain damage and I’m tired of being polite about it.  Like every mom I know, I am, when I need to be, capable of going into ‘Mama Bear mode’.  Mama Bear is marching on Washington.  Stifling my Mama Bear instincts is making me crazy. 

I don’t want a March with a permit or “how many Port-a-Potty’s will we need?”  I want a Sit-in where we’re not leaving until some terms are met.  I want to be inconvenient enough that we can’t be ignored.  8,500 people attended Jenny’s March in ’08.  It never even made it to the major newspapers.  It was a brilliant effort, one of my most cherished days and almost completely ignored in the press.

How do we make change without further harming our cause? How long could we sit there?  What would we ask for?  Who would be our spokespeople vs. how much longer can I carry around these big feelings without doing something about it?

Until I can make something happen I walk.  While I walk I pretend you are all there with me, arm in arm, big signs of our beautiful children above our heads.  There are miles and miles of us and we are singing “We Shall Overcome Someday…..”

Alison N. MacNeil, Licsw

Comments

[Sophie]

Alison, if you decide to go to Washington, I'll go with you.... for Nick, Charlie and all the others!!!! Great article!!!!

[Sylvia]

It's like that old shampoo commercial from the 70's:

I told two friends, and they told two friends, and they told two friends, and so on and so on........

I guess that is what drives Offit and Snyderman so damn crazy. They can't stop word of mouth. People are witnessing what is happening to our kids, and the more Offit and Snyderman foam at the mouth, the more people believe they have something to hide.

The truth has it's way of getting through!

[Bre]

Thank you! Thank you for helping me picture my days of march in Washington last year. I will use it when I am walking in the neighborhood. Moreover, I will find people to keep my boys for a month if I have an opportunity to "SIT IN" for our cause. Get 35,000 peeps, I'll be there!!!!!!!!!

[kim]

On the subject of teaching one person at a time...we held a small fundraiser for Generation Rescue and they sent me a bunch of 11x4 two sided color informational flyers that have been GREAT to have in my purse. I see someone pregnant, I give it to them with a smile and leave it at that. I go to events that are specifically for small children and hand them out. They are great. Anytime it comes up and we have little time to talk, I have something to give them to go home and use for more research. People are always very thankful.

[curt linderman sr]

Great article, I feel the same way, One thing you have to remember is : how much more can we "hurt our cause" by protesting? They hate us anyway, the press ignores us at best and attacks us at worst. Those that think we are nothing but conspiracy theorists and anti vaccine loons will not be able to treat us any worse. so we just need to forget PC bullshit and fight them as they attack us.
You should listen to Linderman Live on AO Radio while you're walking (we're available on podcast. There are a great number of people that feel just as you do. KEEP FIGHTING ALISON!

[Candice]

We ARE all there with you, Alison, in spirit!

[kim]

Lisa in TX - I have been asked to speak to the Pediatric Nurses' Association in our area about my son...is there a way I could look at your presentation? I have no idea where to start...there's just TOOOOOO much to say!
Maybe Stagmom could help you get my email address if so????

[CT teacher]

While I think that it is a good idea to try to spread the word by talking with others, I do see a couple of problems with using that approach as the sole means of educating the public about vaccine dangers.
First of all, it takes a lot time to spread the message to everyone. Every day more and more children are damaged by vaccines so we don't have the luxury of time.
Second, it is not all- inclusive. Let's face it. Not everyone has a computer, reads the paper or walks their kids to school. However, vaccine damage is everywhere....in the country, in small towns and in the inner city.
So, it seems to me that the best way to reach the most people is probably via radio & TV. The few attempts on Oprah, Larry King etc. have been successful and continued attempts should be made, but a public show of mass concern for this issue would capture the public's attention..if a sympathetic news outlet would provide coverage. I am certainly not advocating mass unrest, but organized, peaceful protest has been by and large successful at overcoming discrimination in this country, as well as elsewhere. This issue knows no boundaries , as vaccine damage is occurring worldwide. The US is a great place for the movement to begin. After all, the problems started here and we use the most vaccines. If we demonstrate to show our concern about vaccine safety and vaccine damage, most notably autism, the message will get out and other countries will follow.

[michael framson]

I don't remember the exact circumstances, but some years ago, there was a women, an ecological activist with a Ph.D in some environmental/biological field who was trying to get media's attention on an imperative environmental issue. She had the credentials, the science, and the evidence, but the media just totally ignored her.....until she took off her clothes. Suddenly, the media noticed. Perhaps not enough, and its a sad testimonial, but she was a warrior.

When you don't own congress, or spend millions of dollars on lobbyist and media advertising, and every agency of this corporate government is working overtime against you, all we have is our honesty, integrity, and the age old story of injustice and speaking truth to power. And that is where it is at, on everything which affects our lives.

If taking off our clothes at an IACC meeting gets the attention of law makers focused on this do nothing committee, then that to me would be worth it. I guess it's desperate times that call for heroic measures.

Business as usual at the IACC must end and the spotlight of their institutional obstructionism must be focused on the ineptitude of this agency and those most responsible for perpetuating the ills of so many children.

[GrammaKnows]

Ever wonder what Google Earth shots of your community would look like if there was a great big "A" on the roof of every family home affected by autism - multiple "A"s in families with more than one?

I don't mean just the homes of this kids that were diagnosed...I mean on Grandma & Grandpa's house, aunties & uncles, siblings & cousins, too. Hmmm...

I like the idea of a nonstop scrolling slide show, too.

[Henderson]

One bus stop conversation at a time. Or, for me, it's one dog walk at a time (the woods (plural), the park(s), the coffee shop/health food store little street, etc., etc.). I am a very chatty dog walker :).

The most important thing for me (in my over-educated major research university neighborhood - where everyone or their spouse is either a prof, a doctor, a nurse, lawyer, etc.) - is to start slow, gauge my audience, then be ready to roll the research off my tongue.

Our family's two very different and illuminating n=1 stories are interesting, to say the least. But, they are meaningless unless I know what is going on out in the university research world (especially, the one right where I live).

So, it is research, research, research. And, we are gaining ground - all of us - one person at a time.

[Alison (another Alison, not Alison MacNeil)]

I also wonder if we are getting anywhere.

I used to be an active poster on www.celiac.com's forum, and I have been told I will be banned if I post any more about vaccines. This, even though there are threads galore asking about links between celiac, autism, and vaccines.

And of course, those threads have plenty of people posting Offit's garbage AS FACT, with very few people disputing it.

I can't understand why people don't want to hear the truth, especially when it's backed by valid references.

[Isaacs Grandma]

Hey Alison,
You are not alone in your walk! I am there with you too! Thank you for mentioning us Grandparents who are fighting for our Grandchildren! Port-a Potty's? Who needs them? Maybe if all of the Grandparents out there who have been affected by Autism and tend to have weak bladders were to protest?.....just a thought

[Liz Parker]

Our words rest, like a blanket, over the landscape of devastation wrought by a Government, owned by an Industry, compelled by a blood-thirst for profit, cramming our young and infirm into its maw and disgorging delicate, lackluster Slaves to Pharmacy.

If only our words, so beautifully woven and full of angst, were truly considered by those who do harm without conscience...

Herein lies the problem, without conscience there is no SCIENCE, nor morality, nor integrity.

[Benedetta]

As over educated women (and men) Age of Autism is our class room, blogging and reading other blogs are our homework.

The real test, the real job, is not standing out with a sign through rain and shine (but I salute those that do), but the real test, the real job is tell tale your story to every doctor, nurse, medical personel, neighbor,friend, half way known acquiantence, any stranger that you strike up a conversation with (like waiting in a medical office, church members, and anybody else that listens.

Because of Age of Autism, I have more facts, I understand more of what happened to my family, I understand what has gone with others like my family. I am the over - educated and after 30 years that is what is going to make a difference.

[Robin Rowlands]

Poles, Politeness and Politics in the age of Twitter
By Stephen Fry
---
Robin Rowlands says:
6 November, 2009 at 10:44 pm

---
The Governments of Europe and the USA might argue that my letter must be suppressed
as it will bring their democracies into severe disrepute and trigger
widespread and possibly uncontrollable riots
---
The newspapers might argue that if they expose the truth they will be held to blame and account.
---
Those who serve the realm, that realm that politicians should steer clear of,
make no attempt to oppress or suppress me – they have formed their judgement.
---
---
Clearly the current Conservative Party have a lot to learn, New Labour on the other hand
are evil beyond words it is not enough that they lose the next election that mindset must be erased.
---
Those on the fringe of the New Labour might be considered ignorant however for those in the thick of it, there can be no quick foregiveness or political reconcilliation.
---
My letter is coming out – Europe needs to steer well clear of unwanted associations, unless they too suffer from a bizarre “form of autism”, (A of A - Apologies I Quote Mr Lellouche, France's Europe Minister)
after all you wouldn’t want to be the victim of an unfortunate and ill conceived translation.
---
Robin Rowlands - Merlin's Dad

[Sonja]

When we were attacked on 9/11, one way we showed our support was by putting a flag on our cars. The show of solidarity and support through all those waving flags was inspirational. We came together as a country in livid color everywhere you looked. We need another show of support. Our children have been attacked by the pharma terrorists and its time to raise those flags again. What if every family affected by autism were to put a flag on their cars. Would we have streets of waving flags again? Would society notice how many families are affected? Would we turn heads everywhere we go...I know we would... and it would be a beginning. Its time to show our collective support for our children in a very dramatic way. Our flag could be quite powerful. A parking lot full of them would raise our consciousness...rush hour would be a new experience. It's time to raise the flag for our children.

[ginnie]

The Yes Men are the people for the job for sure Gatogorra! If we could assemble and brainstorm with the Yes Men, Code Pink, Bill Maher, Michael Moore, and Jim Carrey and then have Amy Goodman report on it we'd have toxic vaccines go the way of leeches as medical intervention in a week.

[Lynn]

Let's also mention the pathetic US infant mortality rate that the CDC can't explain (30th in the world after Singapore)--in the news today:

http://www.upi.com/Health_News/2009/11/06/CDC-US-ranks-30th-for-infant-mortality/UPI-45091257523585/

[we shall overcome]

Do you want protest? The overblown swine flu and its rushed vaccine is quickly becoming the eye opener on vaccines in general.

According to today's "El Confidencial", an Spanish on-line news outlet with 2.3 million readers in a country of 40 million people (links are in Spanish, sorry):

(http://www.elconfidencial.com/salud/vacuna-muertes-gripea-suecia-suiza-20091106.html)

The European Union viceminister for health has reported that there are 5 suspected deaths attributed to the H1N1 vaccine, reportedly 4 from Sweeden and one Swiss, one of those dying within minutes of receiving the shot. Furthermore, there are 190 reported nurses with serious allergic reactions to the vaccine in Europe. Sweden has restricted access to the H1N1 vaccine for the time being as a result.

With all this, the government of Poland refuses to buy H1N1 vaccines until they get further assurance of its safety. Poland claims that these vaccines have been rushed to market without proper safety studies.

In Spain half the doctors are refusing the H1N1 vaccine and there are increasing questions about what is seen as a profit driven vaccine craze taking place. As it turns out, 70% of Spanish doctors refuse to get the regular seasonal flu shot every year, a flu virus that these doctors claim is much more virulent than the H1N1 flu.

According to García Rada, a pediatrician at one of Madrid's largest hospitals, what worries him is the addition of a new vaccine to the schedule without proper studies to find out if it is really needed. According to this dostor "the immune system is a huge and largely unknown universe" and caution shiul be taken.

(http://www.elconfidencial.com/salud/medicos-no-vacuna-gripea-20091020.html)

The H1N1 vaccination is scheduled to begin in 10 days in Spain and this Spanish medium wonders who will stand first in line to take it.