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