I want to start this post by stressing something: I do not know what exactly happened last week to the Beegle family on a United Airlines flight. I’ve read multiple accounts but I cannot tell you for certain what happened. I write based on what I can tell from what I’ve read.
And what I’ve read strikes that horrifyingly painful chord of recognition. We hate to say we could’ve been there in crises, but on this one, there is no reason that couldn’t have been me. I have meltdowns. I have similar dietary issues. Being on a flight or any form of travel is fundamentally disorienting and frustrating. Also the younger Beegle was 15. Oh boy was I not fun to be around then.
So when I say I understand I mean I understand. I know what happened. I also understand the other side. How can I not? Meltdowns are terrifying. Even if a video existed, I wouldn’t want to see it. They’re really upsetting to watch. They’re hell to live through. So I get the need to want to protect others.
But ultimately I’m not ok with the handling of it and it speaks to a greater issue. 17 years post diagnosis, I don’t know how much better things are. That makes sense when you remember the most public autism advocacy group, Autism Speaks, is to us a hate group which espouses disgusting rhetoric. The culture is in a weird place of wanting to help us but not really having any idea how.
I think the big issue stems from the uncanny valley we’re in. We can put on a decent face for a time so why not every time? We’re competent enough to frustrate when we’re not. How many of us have heard the words “I know you can do better.” Yes, so do we. It’s usually why we’re frustrated.
There’s a real confusion on how to handle people with autism and for the first time, I’m sensing a public discussion is beginning among the NT. The illusory cure will never be found so we need to be dealt with. We need to be respected on the grounds of who we are. That doesn’t mean we want free reign. But we are asking for patience and understanding. Things ARE harder for us.
Maybe in this moment we can start to discuss that. The mother has called for better education. I have no trouble echoing that call. I’ve seen in my own life the benefits of it. We’re not going away and we’re smart/capable enough to want a spot in the world. I hope we get it.