In typical Vene fashion, I confused the dates. The talk is tomorrow. Now I wish I realized that before I woke up at 8 a.m. to put makeup on.
What talk? A talk I’ve been hired to give about my life with autism. It’s been in the works for months. I’ve had the date on my calendar and I still managed to fixate on Wednesday instead of Thursday. And while I was getting dressed, I thought, for the millionth time, do I even have autism?
This isn’t the first or the last time I will do this. It’s something that adds tons of anxiety to my non-Covid life. I’ve gotten to jobs on the wrong day, classes on the wrong day, airports on the wrong day. Wrong day, wrong time, wrong place.
As a student this really sucked because finals were never at the time the class took place. Those nightmares you have of showing up for a test unprepared? That’s my real life.
But in Covid times, it just means I got ready for something that happens tomorrow. This is why I put the term in my public speaking contract that I have a sort of concierge within the company. Because I can’t be trusted to manage this stuff and getting a hundred emails from many different names and departments just ups the confusion. This is why I couldn’t hold down a regular job without accommodations.
When I practiced law, I was a fucking ball of nerves and not just because I worked at the law firm from hell. Try reading any book of court procedure. Everything is time sensitive. It’s intentionally set up to make things difficult and get you to fail. Ten days, but is that calendar days or business day? When do you start counting? When is something considered received? Lawyers fight all these things and cases are won and lost on bullshit administrative decisions. So, of course, lawyers wake up in the middle of the night terrified that they did something wrong.
My disability is invisible. What people mostly see is the shadow of my disability. Me compensating for the problems I’ve dealt with since childhood. I used to get punished terribly for things I had no way of controlling. I suffered into my mid thirties because I couldn’t figure out life the way everyone else had. Very few friends, no self-esteem, no one to help me or believe in me. Suicidal practically all the time. What you see now is just someone who shows up to her own public speaking engagements about autism on the wrong day.
It’s cute and harmless today but executive functioning is a daily struggle for people like me all around the world and it means that they are unable to work or go to school, they suffer from depression and shame, they are isolated and unable to pull themselves out of dirty homes and health deterioration. The time spent worrying takes a physical toll and leads to shorter life expectancies. People die from these sorts of things.
If anything, this morning reminds me who I’m fighting for. There are a lot of autistics working to bring about acceptance and understanding. I’m glad there are because it’s a huge job and many hands make light work. I have a niche: talking to corporate types about this stuff.
If I were giving my talk today, I’d tell my audience this: we suffer in silence because no one will help and then we get called “strong” for our perceived stoicism. I am not strong by choice. I am strong because I have been forged by a life of chaos and misfortune. No one chooses to be strong. And fetishizing the disabled and their caretakers for our strength, while doing nothing to help lighten the load, is not only cruel, it’s disgusting.
We need help and we need it now. Don’t turn away from the suffering, lean in and help. And for people who are trying to keep all their spinning plates in the air, I salute you. I’m trying to help make it so we don’t have to in the future. None of us asked for this. And that’s what will get me out of bed tomorrow to do this all over again for an audience. Because God knows I wouldn’t get out of bed before nine a.m. for any other reason.