International Day of People with Disabilities: Not All Disabilities Are Visible

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I share a lot here about CP.  It's my primary (and only official) diagnosis.  My CP is also visible.  There are definitely invisible aspects of CP, but since I've already written in depth about those, I thought I'd write a bit about some other (less discussed) aspects of disabilities I live with.

I'm neurodivergent (a fact I discovered early this year...and it explained so much.) I also have CPTSD.  Neither of these are things I've been officially diagnosed with...and yet they're true for me.

Cerebral Palsy does not just mean there is "something wrong with my legs", it means something happened to my brain.  CPTSD means I have lived with ongoing trauma for my entire life.  Longer than I have conscious memory.  Both of these things contribute to my being neurodivergent.

This means a few things that I don't always talk about:

I STRUGGLE WITH SMALL TALK:  By this, I don't just mean it's boring, I mean, it's difficult.  I don't know what to say.  I don't know why it exists.  There's no deep connection formed by discussing the weather.  Or things that just don't matter in the grand scheme of life.  

Throughout my own life, I've felt like there must be something wrong with me because I just can't do this thing that comes so naturally to most of the population.  I usually end up following along silently.  If I try to interject, more often than not, what I say goes over like a lead balloon.

I SCRIPT:  Growing up, quoting lines from TV shows was one of the only ways we could avoid ridicule.  

In my late teens to mid 20s I earned the nickname Jukebox, because I responded to so much conversation in song.  (You comment about something out the window?  I'll respond with Melissa Ethridge's Come to My Window.  You comment about potatoes?  Mashed Potato Time by Dee Dee Sharp.  There truly is a song for every moment in life.)

Now, it's second nature.  Easily 50% of Tara's and my communication with each other is scripts.

I once dropped an open can of corn onto the kitchen floor.  Instead of an expletive, I exclaimed: "Now I have to pick that risotto up off the ground to eat it!"  - a line from the movie Date Night where Tina Fey is forced to drop her expensive dinner on the pavement.  It was a comment on dropping food, but also on frustration at food going to waste.

Scripts also work for happy moments.  A year ago, when Tara and I found out that Jordan Fisher was going to star in Dear Evan Hansen, my initial reaction was to say, "GARY, I'M GOING OUT!" like Kristen Johnson when her character fangirls about seeing Alex Fletcher in the movie Music & Lyrics.

The great thing is, Tara and I don't need context.  So, most of what we say just sounds like a bunch of unrelated one-liners to other people...but it makes perfect sense to us.

I CAN TELL YOU WHAT HAPPENED, BUT NOT NECESSARILY HOW I FEEL ABOUT IT:  Alexythemia is real and I have it.  I often feel like an alien who just landed here from another planet and I need to learn how to do feelings.  It's overwhelming honestly.  Being asked, "How do you feel about that?" throws me.  So, I'll often respond with, "Here's what happened..."  If I'm lucky, the other person listens and responds sympathetically.  If I'm not, I'm left feeling like, "Why did I bother?"

I HAVE SENSORY TRIGGERS:  I have triggers related to my startle reflex like the fire alarm.  I also have others, related to my trauma: discussion of anything medical, fresh paint, the smell of a Christmas tree, a landline ringing...or any of a number of specific calendar dates tied to trauma  And God help me if it's more than one trigger at a time (fresh paint and a traumaversary, for example.)

[A couple of years ago they tested the fire alarms in our building without alerting the residents in advance.  Piercing unpredictable noise for an hour.  Horrifying.  Here I am mid-fire alarm test wearing headphones and a troubled expression.]

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You might see me with headphones.  You might see a look like this on my face, but you won't see that it takes me hours to calm down after the fact.  

Back in the day, you may have seen me out in public, shopping.  I may have looked fine to you.  But you would not have seen how I was dissociating to cope with both the overstimulation and the inevitable onslaught of ableism.

Not all disabilities are visible.

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