Tag: activism

you can’t tell

just from reading my posts

that i decided to stop speaking

there are circuits in my brain

stitched on a backpiece of linen mounted on steel frame

and two circuits here are important:

the one that makes language in my brain

the one that makes my mouth move

these are different but

both are needed to make my spoken words

i watched a friend recite his ASL poetry

hands flapping in rhythmic motion

in the middle of a blocked-off, art fair street in san jose

later

i sat with him and listened to his voice on his talker,

which he posted recently that anthem will pay for part of

(hopefully medi-cal will pay for the rest),

and wondered if i could ever be like that.

there’s a divide where someone forgot to make the stitches,

a divide where my mouth flaps endlessly

caught up in sounds that nobody else understands

where i know what i want to say

but i can’t say it

where i feel the words inside of me

but my mouth won’t make them

there are endless metaphors i could use –

if my goal was to make non-autistics more comfortable –

and that i won’t use because this isn’t about making anyone comfortable

except me

i use the limited words i have

on the people i know don’t understand

everyone else gets the robot

(can i call myself a cyborg now?)

everyone else can still listen

i make rules

don’t look over my shoulder

don’t try to guess what i’m gonna say

don’t pander

don’t coddle

i’m 20 years old

treat me like an adult

my friend

(not the one from the art fair in san jose)

told me a story about an autistic man who,

when given a letter board for the first time at 20,

spelled out F-U-C-K Y-O-U.

that’s what you get for not presuming competence

for making an adult watch PBS Kids

just because they can’t talk.

“can you talk? say something!”

yeah, how about,

piss off!

go fuck yourself!

i went to a party and said hello to everyone on my phone,

and most people didn’t blink.

one guy kept asking,

“what’s wrong? are you sick?”

and i kept telling him,

it’s a long story.

because where do you start,

when a lifetime of meltdowns and overloads and social hell,

when a lifetime of sensory seeking,

when a lifetime of useless knowledge & special interests,

when a lifetime of being autistic

(on top of all the other illnesses and trauma)

begins to make sense?

and then slowly,

slowly,

you begin to realize that it’s not you,

it’s the rest of the world,

and it’s not your fault for needing help,

and it’s not your fault for being different,

and it’s not your fault for being autistic.

there are no rules here

only people refusing to understand

and when there are no rules

there is only room to grow.

I wrote this from the iPad I bought specifically to use as an AAC/text-to-speech device. The exact app I use is called Speech Assistant and is available for Android and iOS for $10. It’s a great customizable app for someone who is able to type and use text phrases without pictures.

I wanted to write about being non/semi-speaking because it isn’t apparent from the way I write that I don’t speak. This is true of many people who use AAC. It’s often also a complaint in autistic circles in general: that non-autistic people don’t think we’re autistic because we look too “normal” from the way we type or write online. (The difference between online communication and in-person communication is massive, to say the least.)

I still can speak but I choose not to. It’s so draining to have to speak and if I have to choose between speaking and ending the day too tired to do much of anything and not speaking and ending the day with energy to enjoy myself, I’d rather have energy. I like communicating. People are nice to be around (some people; some of the time). But speaking is hard.

And, finally, I learned a lot about AAC and being autistic as a participant in the Autism Campus Inclusion program sponsored by the Autistic Self-Advocacy Network. I spent a week in DC with about 20 other autistic people and I was so impressed by how quickly we bonded as a group (especially since autistic people, by nature, are not very social). This poem is for everyone at ACI 2018 – you know who you are.