A bit of a different direction on my writing this morning:
***
I did a thing yesterday.
I took part in a parade.
I cracked jokes all week about it being my 'personal version of hell'- but the real joke was that it is. In fact, I can think of few experiences that would test the limits of my ability to 'pass' more than this event.
What is passing? It's an "art"- I sometimes call it my dark art. It's a prison and it is privilege.
It's the phenomenon that exists when some of us manage to make ourselves appear not disabled for undetermined periods of time.
Not everyone can pass. Passing for Sam is a very rare thing. Sometimes, in a pool or at a park, there is enough going on that people don't notice the hand flaps, or hums, or the fact that he never actually responds to the other kids who apologize for bumping into him while waiting for the slide.
When seen in small doses, a casual observer may not notice my very, very openly autistic son. But it takes most people less than two or three minutes most of the time.
And, quite frankly, I'm kind of glad that passing isn't something I have the option of imposing on him. Sam's outright inability to pass spared him from many harmful therapies and 'treatments' aiming to do exactly that; to normalize, to transform into conformity, to break the Autisticness of his spirit and rebuild him into an automated version of 'typical'.
Unlike Sam, I never had the option of not passing- mostly because no one, not even myself, knew how differently my brain worked. I am from a time when 'gifted' was only seen as a positive, so my areas of need went unnoticed.
It was a time when stims, ticks and rigid routines were believed to be 'bad behaviour' and 'bossiness'; when social and general anxiety were seen as ways to get attention; when I was called dramatic or manipulative for trying to mimic social interactions that made no sense to me whatsoever; when I was told I was lying when I said that I could see sounds, and taste light; when I was told that I was lazy when I was practically failing math, despite stellar grades in every other subject; when I was told that I was a baby when I experienced pain differently than other people, sometimes being overwhelmed by paper cuts and other times not feeling broken bones for months at a time; when I was told that I was a slob because I didn't know how to organize my space; when I was told that I stupid because I couldn't read a map or tell my left from my right.
It was a time when we still believed suicide attempts to be 'cries for attention', not recognizing them as the very real signs of mental illness that they are. (Did you know that Autistic people are 28 times more likely to contemplate or attempt suicide in their teens than not Autistic people?)
Surviving meant learning how to pass.
Especially since I didn't know that I was disabled to begin with.
Now, as an adult with an entire alphabet soup of clinical diagnoses (which most accounts now agree amount to Autism), I am finally learning to release myself of the mental, emotional and physical labour that goes into pretending to be like other people.
For the most part. Sometimes.
Well, at least with some people.
Like 3 of them. At least.
It is really, really, really hard to unlearn everything about your behaviours, and to trust that the world will catch you. Because it doesn't usually- I've seen too many people fall through the cracks to believe that the world will provide me a soft landing. And right now, I can't afford to crash hard and break down. I have two kids, with two spectacularly unique minds, that need me to be their cushion. So now really isn't the time for me to focus on finding my own.
I shouldn't have to pass. But the world is really cruel and dangerous to people who don't pass.
And I need to think about my child who can't pass first.
Which means that, for now at least, I upkeep the things I have always done to help me pass- to help me blend in. Which- ironically- actually make me stand out...but in such a way as to convince people that standing out is my intention.
I seek situations where I can control the outcomes, often centering myself center-stage so as to minimize unpredictability and thereby restrict feelings of general anxiety.
I bring buddies with me to events, pairing myself with people who are socially comfortable and who make me look socially comfortable by association (Thanks Charlie and Ashley).
I cover my head with hats and my eyes with huge glasses- maybe people won't notice how seldom I actually look directly at them.
I cover my body with costumes so that they see the character, not the person.
I literally become a different person- or rather, an extreme version of myself. A caricature of who Zita would be if Zita was more like everyone else.
It's over the top. But it's safe and manageable. And it has kept me together for as long as I can remember.
I've played this role for so long that most people who only know me a little bit would swear that it is who I am and who I have always been.
What they don't know is that, by the time the parade was over, I had literally lost the ability to word. I sat in my car, ignoring my husband and children, for almost an hour. Then I sat at my best friend's house (who was kind enough to offer parenting support for the rest of the day because we both knew I would be a mess after I got home) for almost three, barely participating in the conversation and often having to leave the room to recenter myself, curling into a fetal position and rocking myself back and forth in the armchair.
I cried for at least 45 minutes when I knew I had to go back at teach that night.
I brought booze to bribe myself to get through it.
My bucket was as empty as it gets.
The parade took literally everything I have in me.
And it was the very definition of the all or nothingness of my disabled life.
So why did I go? That's an excellent question.
Even disabled people want to be a part of the community. While going to a parade may not have been my dream way of spending a Friday morning, being with the people who make me love being alive, and sharing in the experience of pride that the parade evoked was an opportunity that I didn't want to pass up.
See, the thing is that I have a job and it is literally the greatest job in the world. It's extremely active, requires tons of mental, physical and emotional energy- which is good, because I have too much energy and my body doesn't know what to do with it. It is creative. It is artistic. It is fun. It is silly. It is empowering. It is vulnerable.
It is the most "me" I have ever been in my entire life.
The people I get to share this job with are some of the best people I have ever met. They are funny, interesting, thoughtful, kind, considerate, inclusive, empathetic, supportive and accepting. This event was special to them- and that means it was special to me. And every single minute of it was worth it to get to witness the joy that they had at being part of something so spectacular.
Watching Charlie dance with my studio owner and mentor, and knowing that I am setting her up for a life of health and wellness, was a beautiful sight.
Dancing on the streets with children, women and men who feel empowered and capable of moving their bodies because of the model we have set in our studio filled me with pride and humility.
And doing burpees with a local newscaster is a story that I will enjoy telling when I am 108 and still doing burpees in my living room.
Just because something is hard doesn't mean it isn't worth doing.
And just because the physical aspect of the activity was difficult for me doesn't mean that the emotional and psychological benefits of feeling like I am part of a community don't outweigh the cost.
The parade wasn't 'fun' for me the way that it was for other people. But that doesn't mean it wasn't special. And I will do it again next year.
And it will be hard. And I will probably need my entire arsenal of 'passing tricks' to make it work.
But every day that I tell my story and immerse myself authentically into my community, unabashedly sharing my experience and openly discussing the challenges that confront those of us with different neuroprocessing needs, these tricks start to feel less and less like 'costumes' and more and more like 'tools'.
And maybe, just maybe- this time next year- while the outside world continues to the see the caricature of me that I need to create in order to navigate its complexities, a few more people on and off the float will recognize and understand that I do these things in order to be able to do for them what they do for me.
And maybe they will better understand that sharing joy with them in ways that make them feel truly joyous is worth it to me, even if it means spending three hours in my personal version of hell.
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