A Mandela Approach to Autism
An activist for another disease recently asked me why our community didn't do more to support political candidates.
I'd thought that over the previous few weeks I'd explained the situation in which we find ourselves well enough that she wouldn't ask such a question. Apparently, I hadn't. My simple answer is that no politician really wants our support. We're more of a liability than an asset. Any politician who actively supports the "bio-medical" or "vaccines are linked to autism" line of thinking lays themselves open to immediate attack.
I told this activist that the situation of our two communities was vastly different. Their fight with the medical community is over recognition of their disease and whether an infectious agent which might be behind it. Our fight with the medical community is about the disease we believe they caused. It's a pretty big difference.
The question then becomes, how do we win? And by winning I mean a clear understanding of what goes wrong in the body to cause autism, the ways to avoid it, and if your child does have it, what are the options for treatment?
I can say the answer is fight, fight, fight, and our community should be proud of the way we have moved the ball forward. A large number of new parents are very concerned about vaccine side-effects and I think the new Safe Minds public safety announcements being shown in movie theaters in Oregon is also a wonderful development.
But I still struggle with figuring out an effective model of political action for our community.
After reading the wonderful book, Invictus by John Carlin (originally entitled Playing the Enemy) about Nelson Mandela's efforts to lead and ultimately keep South Africa together I felt I may have found a model for our efforts.
I continue to be amazed at the depictions of Nelson Mandela as an almost Gandhi-like figure when even a short review of his life would show he was much more complex. Mandela was the founder of Spear of the Nation, the military wing of the African National Congress. They did actually bomb police stations and other symbols of white power. (Admittedly, this was after decades of trying to negotiate with the white government.) When Mandela was sent to prison for his role in these bombings it wasn't a miscarriage of justice. He actually did plan them.
But it was in prison that Mandela realized that in order to win he had to persuade his enemy to lay down his weapons, rather than overthrow him. He learned the Afrikaner language, studied their interests, engaged his guards and prison officials as human beings, and sought to allay their fears.
It must be said, given the Afrikaner history in South Africa, that they did have some legitimate fears.
But as much as Mandela sought to cultivate a relationship with his oppressors, he stood firm when he didn't get what he wanted. At one point the government offered to release him if he promised to avoid politics. He said no and spent another eighteen months in prison before his official release.
Mandela negotiated with some of the most powerful forces arrayed against his people and lost neither his principles or his humanity. That's a difficult thing to achieve.
And so I wonder about the future of our movement. When the Secretary of Health and Human Services, Kathleen Sebeilus tells media outlets not to give space to our views it's clear that they put us in the same space as Mandela's political organization, the African National Congress.
There were many factors which allowed the transition in South Africa to be a relatively peaceful one. There were angry marches, lives torn asunder, and violence on both sides. But it didn't fall apart and that was probably due to Mandela's approach.
I often wonder how we might emulate Mandela's approach. How can we be firm at the same time we are polite, and never lose sight of the prize which is the return to health of our children?
Kent Heckenlively is a Contributing Editor to Age of Autism
What do most ME/CFS sufferers believe messed up their immune system?
Posted by: Benedetta | November 27, 2010 at 09:28 AM
VACCINES CAUSE AUTISM
"It must be said, given the Afrikaner history in South Africa, that they did have some legitimate fears"
There are so many examples of atrocities by Afrikaners against innocent people that there simply is not enough usable memory space to document it all as it would probably require about a gazillion terabytes to do so.
More than five million people died in the fighting in the Congo between 1998 and 2003, when hostilities officially ended.
Read more: http://www.cbc.ca/world/story/2010/04/16/f-congo-human-rights-watch.html#ixzz16Rf0qGGB
The evidence concerning Afrikaners and apartheid leave little doubt that apartheid was incredibly immoral. It was a living vestige of the colonial racism that emanated from Europe in the early days of Imperialism. In modern times, power structures that sustain racism have come under close scrutiny. History has shown that systematically disempowered classes eventually rise to right the imbalance, frequently "by any means necessary." The historical development and natural wealth of South Africa had combined to support a political anomaly, a contemporary country caught in the morals of Imperial Europe
Kent your romantic and nostalgic look back at the Afrikaners can only be described as misguided.
The Nazis had legitemate fears also. they brutally oppressed and murdered based on race much like the Afrikaners and when you take up a position as such you should be afraid of losing because you know you should and will be punsihed and SOME of the Nazis were like Karl Brandt a Nazi doctor, who was hung for his malfeasence.
Mandela fought his war from a jail , we are neither in Jail or helpless, however we are not sufficiently motivated either. I am opposed to the approach of letting murderers go like they did in South Africa. Every one of them should have been prosecuted and executed like many of the Nazis were. However because the oppressed were powerless, much like our children punishment that fit the crime was not meeted out and problems persist today.
People do not talk about South Africa or Autism because it does not affect them.
Aggressors must be dealt with acccordingly and history is not kind to cowards and nor should it be
You may recall one Arthur Neville Chamberlain (18 March 1869 – 9 November 1940) he was a British Conservative politician who served as Prime Minister of the United Kingdom from May 1937 to May 1940.
Chamberlain is best known for his appeasement foreign policy, and in particular for his signing of the Munich Agreement in 1938, conceding the Sudetenland region of Czechoslovakia to Nazi Germany. When Adolf Hitler continued his aggression, Britain declared war on Germany on 3 September 1939.
Chamberlain's reputation remains soiled and sullied at best among historians, with the initial high regard for him being entirely eroded by books such as Guilty Men, published in July 1940, which blamed Chamberlain and his associates for the Munich accord and for allegedly failing to prepare the country for war. Most historians in the generation following Chamberlain's death held similar views, led by Churchill in The Gathering Storm.
No personally I prefer a Malcolm X appraoch
or a Israeli approach to these criminals here in the United States who spread disease amd pestilance, in the name of health care, throughout the world. Justice by "any means neccesary" and "We shall never forget"
Posted by: WILLIE | November 26, 2010 at 09:38 PM
Another coincidence. Just 5 minutes before I logged on to AOA I was thinking, "No one cares about autism when their own kids are fine, and when their own child gets autism, that's all they care about"
The point that I would like to take from this, is that you have to tell people something meaningful to THEM. Anything related to vaccines that may impact their lives, sends them scurrying to Google. For example, one can ask the person who regularly gets a flu shot at his place of work, to Google on Flu vaccines plus Alzheimers. After that he is interested in more information about other vaccines.
I suggest that we need to hire good PR firms to help us and we could think about what stories and images regarding autism have made the most impact on us.
The autism community is very unlucky in that so many of the most committed people are the least able to get out of their own homes easily.We have to find ways around that.
Posted by: Cherry Sperlin Misra | November 25, 2010 at 01:35 PM
Kent, thank you for this insightful analysis. In reading this, I am struck by the similarities between what is happening with autism and what is happening with ME/CFS. What you have written about autism is true for ME/CFS as well. With such similarities, isn't there something we can do to join forces?
24 years ME
Posted by: Patricia Carter | November 25, 2010 at 02:43 AM
The people have the most power of them all - without violence. There is no political force necessary. If the people chose not to buy the product vaccinators are selling, it would stop.
Whenever we stop buying vaccines, they push back harder with scare tactics. Let the push-back wash over you because you know better. You have more power than anyone else on earth. Take the money away and there is no product to sell us. Then they will listen and scratch their heads wondering what happened.
No customer, no product. Now THAT is a model we can all relate to.
Posted by: Cynthia Cournoyer | November 24, 2010 at 08:35 PM
How do you say equitable estoppel for all clinical research fraud and RICO claims brought during Vermillion's tenure with FDA?
It sure does sound like there was big time corruption within FDA's OCI/OIA for more than a decade. Why has GAO let them off the hook so gently? This is an outrage. The public should be furious. Why has there been no formal investigation by the U.S. Department of Justice?
Posted by: patrons99 | November 24, 2010 at 04:51 PM
@ Carol - thank you for the link to the FDA article.
So FDA’s OCI was “asleep at the wheel” for the last decade, while pharma’s white collar corporate crooks were on their “crime spree”. This smells of regulatory malfeasance. Why is Vermillion being let off the hook so gently? Why is there no formal investigation and/or indictment? Why isn’t DOJ looking into this matter? Lives have been ruined. Lives have been lost. There’s much more to this story than meets the eye. This took place during the Bush/Ashcroft administration. How do you say equitable tolling for all 5,000 of the vaccine-injured families in the Vaccine Court?
"We appreciate Terry's years of public service and wish him well in retirement,"
This is b*llsh*t! This is utterly disgusting! We’ve ALL been f*cked by FDA!
Posted by: patrons99 | November 24, 2010 at 04:33 PM
Take money out of the equation.
Exploit the "don't overspend" mentality today and convince politicians that if vaccination is truly in the public's interest then mandated vaccines should be done with ZERO profit. If companies and public health officials truly have "the public's interest" in mind, then they shouldn't mind not financially benefiting (directly or indirectly).
Emphasize the waste of money that occurred with the H1N1 vaccine.
The industry can still exist. If one wants to vaccinate and pay for it they can but it is their choice.
Posted by: KDM | November 24, 2010 at 04:27 PM
@ Autism and Anti-Vaccine Advocate -
"I agree totally that we have to have control over our bodies through state exemptions (religious and/or philosophical)."
I certainly agree with states having vaccine exemptions. But doesn't that create a patchwork of variation throughout the Country, on this important issue? Not only that, but doesn't force you to draft a new exemption, each time pharma adds a new jab to the schedule?
Why not seek to abolish vaccine mandates completely at the federal level by means of a medical freedom initiative?
Posted by: patrons99 | November 24, 2010 at 03:04 PM
I like Amy's suggestion: "I encourage you to consider a small act like this that can help cumulatively re-educate one person at a time."
I think this is a great approach especially for those who don't have the time or energy to start organizations or write impactful books and otherwise do something huge for the cause.
One thing I do is everytime I get a telemarketing call now where someone asks me to donate for a cause, I politely interupt them and tell them I appreciate what they are trying to do and the cause they support but that I won't be giving any money to them because I have chosen to give my limited funds to support autism related causes. I then proceed to educate them on the key facts about autism - the rates, highlights of what severely affected kids deal with, that it's epidemic, that it's environmentally caused, that there's still mercury in vaccines and the damage continues. I go on to encourage them to think about doing what they can to end the epidemic too. As an example I suggest they look into making their next telemarketing job be raising money for autism.
It's the end of the year and the non-profit fundraising efforts are about to really kick in. These people interupt your evening to further their agenda; why not interupt their time to further yours?
Posted by: Beth | November 24, 2010 at 02:20 PM
Check out the letter found here http://online.wsj.com/article/SB10001424052748703730304575633050712742496.html?mod=googlenews_wsj from Senator Grassley to the GEO back in June of 2008 asking for an investigation into "...on June 5, 2008, I forwarded a request to you asking that GAO review the activities and operations of the FDA’s OCI/OIA. On January 29, 2010, GAO issued its report..."
The Senator goes on to say in his letter, Recently, I received a whistleblower complaint regarding, among other things,
GAOs field work associated with its Report. The complaint was prefaced by the
following comment, “I am not sure what the GAO was doing while it was inspecting the
FDA Office of Criminal Investigations, but I can tell you they weren’t awake while they
were doing it.”
The man made $200,000 a year to work out of his house in Virginia. He's been there since 1992 and it is only recently we have seen someone criminally charged. http://www.newsobserver.com/2010/11/10/792447/former-gsk-attorney-indicted.html
Posted by: bensmyson | November 24, 2010 at 01:18 PM
Dear John Gilmore,
I agree totally that we have to have control over our bodies through state exemptions (religious and/or philosophical).
I have a Thanksgiving question for everyone.
How did the American Indian survive without all the Federal government agencies such as the IACC, NIH, CDC, etc.?
It must have been tough that they didn't have the CDC there to tell them to get vaccinated. Or the Dept of Interior to give out fishing and hunting licenses. The list goes on. Must have been real tough for our native American friends.
Posted by: Autism and Anti-Vaccine Advocate | November 24, 2010 at 01:04 PM
I fear there is another analogy with South Africa and that is the essentially criminal nature of so much of what has happened. The other side are not only rapacious they fear what will happen if they ever back down/lose their grip. Some year ago (although I cannot presently trace it) John Heptonstall proposed in BMJ Rapid Responses that there should be in the UK 'a truth and reconciliation commission' on the South African model for vaccine damage.
This was about 6 years ago. Certainly, I also took the view then that what was most essential was that the exploitation be stopped: if that happened we could certainly afford to be magnanimous. All these year on I am very fed up: they have told a lot more lies, done a lot more damage, but it still has to be said that the most important thing to go forward is the simple truth.
Posted by: John Stone | November 24, 2010 at 12:58 PM
We need to organize and develop a cohesive strategy, one that is practical to implement, and can be achieved in a reasonable time frame.
We ought to develop a bipartisan coalition of the willing to expressly protect medical freedom. Such a strategy might actually bring both the VAXERs and ANTI-VAXERs together in a common cause.
Those of us who don't vaccinate don't want to force our views on anyone - we just want to be left alone without being accused of spreading disease or FORCED to receive vaccinations.
Eventually, those who choose vaccination will realize that vaccine-induced susceptibility to diseases is a very real concern, for which there is growing body of evidence. Over time, the number of citizens who choose vaccination will decline, once they see the value of strengthening their God-given natural immunity, but we must all have the freedom to make personal medical choices.
A medical freedom agenda is a unifying strategy. This strategy has the advantage of bringing VAXERs and ANTI-VAXERs together. This is a good thing. Both sides should have the right to make personal medical choices. This right should be expressly protected in law.
VACCINES CAUSE AUTISM
MAKE AUTISM STOP
MEDICAL FREEDOM NOW
END MEDICAL FASCISM NOW
Posted by: patrons99 | November 24, 2010 at 12:52 PM
Thank you for bringing up this history and for the reminder that leaders of peaceful movements are almost always more complicated than we think. It's important because it's impossible to follow in the footsteps of saints, and we need a map here.
In terms of the complex history of anti-activist propaganda (of which psychiatry is an important arm) in the US, I would say that we're up against something very different from the anti-Apartheid movement faced in their time and society. In the US, I'm afraid the public has been "inoculated" for decades against any potential Mandelas who might come along for other causes. It seems the power of a good movement leader has been recognized these days and will get the Wakefield (or worse) treatment-- and the media will turn the cameras away (perhaps not enough, otherwise why the reminder from Sebelius?).
Whereas black South Africans faced violent mob mentality, violent suppression and subjugation, we face more the "blob" mentality-- a sort of amorphous and pervasive PR war for the minds of consumers, which has been going on far longer than the epidemic. Like racism, certain propaganda has become entrenched, but it's way more fragmented (what exactly constitutes "anti-science"? Who the hell are these online viral marketers industry keeps unleashing?)/ It has started to break down to some degree, but like George Bernard Shaw warned, that may only last until the next (fake or induced?) disease pandemic.
I agree with the commenter here who says we have been polite, we have been civil. Being less polite doesn't mean less civil though, since civil implies nonviolent and that we've always been. We can certainly remain polite to regular day to day people. But I remember Ghandi proclaiming that he never advocated for "passive anything".
Recently I've been more interested in Gene Sharp's precepts on the "democratic mole" method of nonviolent resistance which involves using a host of approaches, including interpersonal influence, satire, demonstrations, information campaigns, etc. Sharp's Albert Einstein Institute coached members of OTPOR!, the Serbian Resistance movement that literally mocked Milosevich out of office, and reportedly influenced the members of the Iranian Green party who dressed up in chadors (men did this) to protest the elections.
There are many ways to skin a cat in a civil manner. I wonder where Mandela stands on pharmaceutical corruption and dangerous vaccine ingredients.
Posted by: Adriana | November 24, 2010 at 12:26 PM
I am grateful for so many parents (like the editors/writers at AoA) who are able to do more in the political and medical arenas. For myself - a single mom/foster parent of 3, 2 on the spectrum - the politics of autism are often too painful on a large scale, and it's all I can do to read to the end of some AoA articles. But every time a stranger asks about my son, in any school conference, respite planning meeting, casual reference in a conversation with a colleague/neighbor/relative/student, I refer to Noah as "vaccine injured," & calmly, factually elaborate whenever anyone asks. Thousands of individuals a year hear that phrase describing my clearly impaired child,& after hearing it, new moms have often sought my input when deciding whether to vaccinate their babies.
We have seen significant changes in social constructs which have occurred simultaneously with changing the specific language we use to refer to minority/ oppressed groups in the past. For those like me who find it a bit too draining to both care for an autistic child and enter the larger political debate on a regular basis, I encourage you to consider a small act like this that can help cumulatively re-educate one person at a time. I was afraid at first if I made a conscious choice to use "vaccine injured" in place of "autism" in all circumstances, people would dismiss anything I said next as delusional, but that was not at all my experience. It's easy for anonymous Internet posters and the media to dismiss us, as a group, as hostile & crazy, but one on one at Girl Scouts, after school pickup, etc., we're usually received quite sympathetically & rationally, if not with some amount of supportive shock and outrage at the systematic poisoning of our children.
Posted by: Amy | November 24, 2010 at 12:10 PM
South African style violence will get us nowhere. A dogged determination to inform the public and the politicians will bear the most fruit. The ongoing economic crisis has hurt the credibility of corporations in general and I believe the public is more open to a critique of corporate practices than ever before.
Posted by: Theodore Van Oosbree | November 24, 2010 at 11:48 AM
There are two sets of fears to consider here. The first is the vaccine industry's fear of loss of money, both from lowered sales and lawsuits. I don't think we are ever going to be able to do anything to address this fear.
The second is the public's fear of disease, epidemics, and death. This is the one we need to work on.
Posted by: Gilbert Pilz | November 24, 2010 at 11:26 AM
Maybe this is a good sign?
"WASHINGTON — The head of the Food and Drug Administration's criminal investigation unit is stepping down, months after the latest round of criticism directed at his department by congressional investigators.
An agency spokeswoman confirmed Tuesday that Terry Vermillion told FDA staff this week that he would step down....Vermillion, who spent 20 years in the Secret Service before joining the FDA in 1992, is among the highest paid officials at the agency at roughly $200,000 per year. His department has been the subject of several investigations requested by federal lawmakers.
Earlier this year the Government Accountability Office said that the FDA must exercise more oversight over Vermillion's unit, which has operated largely independent of agency leadership, despite growing into a $41 million operation with 230 staffers over the last decade. In 2008, House and Senate Republicans questioned the priorities of the criminal investigations unit, specifically its focus on drug abuse cases instead of broader misconduct by large companies.
'I hope that with new leadership, this office will contribute more to the FDA's overall mission of protecting public safety,' said Sen. Charles Grassley, R-Iowa, in a statement Tuesday evening."
Posted by: Carol | November 24, 2010 at 10:24 AM
Thanks, Kent, I feel like we can use this right about now.
Posted by: Jen | November 24, 2010 at 09:36 AM
As long as people are scared of disease there will be an over zealous pharmy ready to prey on that fear.
In spite of what has happened to my family - a life time has almost gone by - so I can almost tell what the outcome of their illness will be. It is the same as if we had caught communitable disease and had complications. What did Tom Insel say: Hmmm something about what was good about getting rid of childhood diseases is that it was the complications of mental retardation that have disappeared. Any of you hear him say that? But there are also other complications that are so many we have a hard time listing them. GI is not the only thing now is it? For my family it is also a stiffness, and deep muscle pains all over the body, and it is the heart too.
But they are alive aren't they? That is what people think that see them.
And they are moving around, aren't they?
If they had actually got measles, or chicken pox, or mumps, or whooping cough they would have died for sure!
Well we all got those vaccines and our family is just fine, are you SURE that is what really happened?
Hey, Diptheria killed a lot of kids, you should fall to your knees and thank God there was such a vaccine.
Do you know how many kids became deformed/paralazed and have life long problems because of polio? You just to young to see what polio did to people! (actually I am not too young)Then you get to hear that their brother had polio, or they had polio, and you get to see them pull up their pants and show you how they have a foot drop and have to have a built up shoe. I could pull out my son's brain scans and show them his two bright white spots from ischemia, or maybe his seizure medicine that he has to take twice a day for the rest of his life. But it is not like I can carry them around like a foot or something. Besides that is not the argument to begin with. I want to know what was the process that caused my family to react to the whooping cough vaccine.
Oh, and that anthrax vaccine! A few letters in the mail and even though there is a Gulf War Syndrome - no body has actually seen these soldiers, nor is this vaccine linked to this problem. Besides it is all in these guy's heads anyway.
We have a long - long way to go to win this war.
Posted by: Benedeetta | November 24, 2010 at 08:26 AM
Isn't this what we have been doing? We have been firm and and polite and we have never lost sight of our children. I agree with the approach but it seems to me it is exactly the one we have been using.
Posted by: Sonja | November 24, 2010 at 07:02 AM
Interesting analogy Kent. I think their are similarities between the Afrikaner regime and the vaccine industry in that there is no room for compromise of any sort. The vaccine industry is completely inflexible and incapable of responding to anything other than their own internal profit-driven logic that all vaccines are necessary, more and more are required all the time and that coercion is needed, even desirable, to compel submission to their goals. They are incapable of understanding that they are the primary cause for the increasing lack of confidence in their program. And I am predicting that the vaccine industry will collapse overnight in a way similar to the Soviet Union where there was no violent internal struggle but the whole rotten structure imploded when a sufficient mass of people just stopped believing and obeying.
I think our opponents are becoming increasingly irrational. They are faced with the growing problem of how to get the sheer number of injections into people, even those willing to comply. I think they are going to have a much more difficult time creating the next fake flu epidemic after the swine flu fiasco. I also suspect that the non-compliance rates are far higher than they are willing to admit. They are relying on hacks like Chris Mooney, Seth Mnookin, and Brian Deer, and of course the King of Conflict of Interest, Paul Offit, to make their case for them. One advantage we will have with the current economic crisis is that state governments will be far less willing to bank roll the latest marketing campaign the vaccine industry cooks up.
Regardless of the course things take we still need to keep on fighting for justice for our kids and the right to control what goes into our bodies and the bodies of our children.
Posted by: John Gilmore | November 24, 2010 at 06:43 AM