During The Great Burnout, I dropped off my normal reading of autism-related RSS feeds, Twitter, and pretty much everything else. Clearly I’ve missed out on a great deal of what’s been going on personally with our online friends, and that’s saddened me. I look forward to reconnecting with the world.
But so many of the other more news-related feeds and sites about autism issues, debates, and such remind me more than ever of daytime soap operas. You can skip weeks and months of episodes, come back, and in five minutes pick right back up where you left off. It’s like the plot never goes anywhere; we just circle back and around again.
But I’m not talking about things we fight for together like mandates for autism coverage in health insurance plans, full funding for special education and IDEA, disability rights, and so much else. In these efforts, we join together and continue to make steps – incremental or giant leaps – forward.
It’s in those other areas where we fight amongst ourselves that I am completely tired of it all. We fight about therapies, causes of autism, diversity, ‘cures’, and on and on, and I begin to wonder whether we’re doing so not to seek truth or discover what’s best for our children but to just prove which of us are right. Regardless, in the process, we are practically killing each other.
And the giant, pink, flashing, neon elephant in the room is this, and I think until we really get this, we’re going to keep falling further into this hole.
You’re afraid. I’m afraid. That parent over there is afraid. The parents in your child’s class are afraid. The parent who believes vaccines cause autism is afraid. The parent who can quote chapter and verse that they don’t is afraid. The parent who goes to a DAN doctor is afraid. The parent who thinks biomed is a waste of time is afraid. The parent seeking a cure is afraid. The parent who thinks a cure would take away their child’s identity and rob society of something essential is afraid. We are all afraid. And the fear has gotten to the point where it’s tearing us all down.
Why are we afraid? Every minute of every day we devote ourselves to our children. We are trying to help them walk up a mountain so high that we can’t even begin to see the top of it. And we are afraid that, even in spite of all of our best efforts, we might fail them. We are afraid that our absolute best might not be good enough. We are afraid that things might never get easier for them. We are afraid people will reject them. We are afraid that they will not find love nor someone special to love them in return. We are afraid they will not be able to graduate or find employment or live independently. We are afraid they will suffer or live forever in a constantly hostile world. We are afraid that our bodies and souls will give out and explode because we are so tired, stressed, and desperate. We are afraid we will die and no one will take care of our children. We are afraid of all these things and ten thousand more.
The stakes for each of us are incalculably high. We are talking about our children, our beloved. To fail them is the worst thing we can imagine, but because we can imagine it, we are understandably scared out of our minds.
Every time we want to bite each other’s heads off on some issue, before any other words come out of our mouths, we should be required to say, “I’m afraid, and you’re afraid. Where do we go from there?”
I hold several opinions very strongly. I think some perspectives are plain wrong. That is as much my right as it is for you to think I’m completely full of it. Admitting we’re all afraid doesn’t release us from the rigors of science, ethics, humanity, compassion, and respect that should inform everything we do. But you know how awesome and powerful we can be together when we’re all working on the same side, and you know what a nightmare it can be when we come at each other with the claws out.
If there’s one thing we all have in common it’s the things we’re afraid of. When we turn our fears into passionate energy to advocate for our children, we are unstoppable. When those fears cause us to strike out in anger, we tear each other down. When they consume us, we cannot make good decisions for our children, deal with all the people and institutions we have to work with every day, or make sense of all the information that bombards us.
There’s nothing at all wrong with being afraid; it’s when fear severely compromises our ability to parent and advocate that we’ve got real problems. And there’s nothing at all wrong with spirited debate; it’s when we tear each other down day after day that we lose.
Even if the person you’re talking to won’t, let’s all try to practice some measure of compassion. And let’s practice it toward ourselves too. Lord knows I need to because I’m as guilty of all this as anybody, and my anger was eating me up from the inside. If The Great Burnout and the time away taught me anything, it’s that I need a new perspective. I’m still very tired – and I know you are too – and I don’t feel like spending my limited energy on anything that’s not working for my children and the positive change they need in the world in order to succeed.
So before you or I jump in the trenches again, remember Plato’s words:
“Be kind, for everyone you meet is fighting a hard battle.” – Plato