My spirit lives outside of time, but my body lives within time.

My spouse Ming and I have become close to a community where there are no clocks. “Why are there no clocks here? Time is a construct we invite you to disconnect from,” a laminated sign says in outhouses, on the wall in Garden House, and taped to the piano altar.

It was computer-made, printed, and laminated. I believe the lamination is to help the signs withstand rain, sun, and wind– so they last longer, which is about time.

“Why did you laminate your signs about how time isn’t real?” I ask the faerie.

“So they last longer,” the faerie says.

The concept of living without clocks thrills me because I need places where I can experiment with creative ways of being. Living without time simultaneously is impossible because I’m disabled, and time is an access need.

time is an access need

Maybe time isn’t real, but many disabled people need to know when to take our medicines. I take my morning pills around 5am, and my evening pills around 5pm. It’s not a situation where I could “ listen to my body” about when to take a pill– I need certain medicines spread within me on a schedule, to keep a critical system of my body functioning.

My spouse Ming has narcolepsy, which is a sleep disorder that causes excessive daytime sleepiness, struggle sleeping at night, and a dreaminess at all times (among other issues). Ming takes pills all day at set intervals to stay awake. Tracking the time Ming takes pills is a lot of what we do every day so that Ming can have a life– a life of being present, involved, connected to other people, and doing what they want to do.

I’m happy for people who don’t take pills. Much respect to your body and your choices. I don’t want to make a value judgement about taking or not taking pills– that you are better, I am better, or pills are necessary to be valid or not valid in disability. Just I’m saying some people need time. Clocks are necessary for access.

accurate event times are an access need

I save my spoons for an event, but when it starts an hour late, I’m screwed. My body exists in time, so events starting late isn’t cute. It can be brutal for disabled people.

I rested all day, minimizing physical exertion and keeping my stress as low as possible, so I would have energy at 5pm, which is normally a time I start losing my ability to function. When it’s 6pm and the event hasn’t started, it’s almost time for me to go, so I’m crying because I wanted to be in community. I needed to be ok in a social space with other people, so badly. So much of my time, I spend alone.

But again the communication was not accurate. I go home exhausted, looking forward to two days of recovery, for the event that only began as I was being driven away.

I can socialize for only a little while. As for mobility, it hurts. I can stand for a short time. If there’s a march, it’s probably moving faster than I can march, and I can only go a fourth of the distance.

So I need a map of the route so I can get a ride for a portion. But routes change, and I understand that almost every event is designed for abled people.

time and autism

I’m the kind of autistic who has a memory problem– I remember too much. It makes people uncomfortable when I memorize their birthday by accident, or I recall their cousin’s name which they mentioned once five years ago. People have been weirded out by the info I retain, like I pay too much attention. So at times I have pretended not to remember, to avoid making people uncomfortable.

When I memorize train schedules on accident, it’s because I notice the pattern; I remember with no desire to remember. I have an emotional / physical reaction to the whistle, and a reaction if the train is early or late. Excitement, curiosity, and discomfort flow through my body, often all at once.

Some people have “time blindness,” a struggle with time in the opposite direction. I can’t turn off my noticing of time, but some people can’t turn it on. Much respect to all of us.

lamination

“Why did you laminate your sign?” I ask the faerie in dream space.

“Because my time is valuable. If I’m going to write, edit, design, and print a sign, I don’t want it to disintegrate in a month. I need it to be there for a while,” the faerie says.

“Got it,” I say. “My time is valuable too.”

A wispy moonlit cloud rolls by. Wind kicks up and blows through Grandmother Maple. Her leaves dance. I accidentally drop my assistive device, and it clatters onto a solid sheet of night.

I float up the hill to my cabin, then hold the edge of the deck as I shuffle up the stairs.

thank you

Thank you to whoever made that sign which has given me so much food for thought.

Thank you to the community I love for welcoming disabled and dying people for decades, in so many shifting, good hearted, imperfect ways.

Thank you to time for playing peek-a-boo with me in your real unrealness.

Thank you to everyone who resists capitalism and the sad cultural norms of productivity as worth.

Thank you to my spouse Ming and everyone who supports my body and spirit.

Thank you to everyone who does disability justice.

questions for discussion

Where does your own worth come from?

How badly do you need to be ok in community?

What’s your relationship with time?

What concepts thrill you?

Who is this event for?

Strawberry Pancake Fae Nopales is an art-witch anarchist who lives in community. Pleasure is berry’s favorite way to experience God. Find them at listeningtothenoiseuntilitmakessense.com, ilikeyourstims.com, and on instragram as @xtrikeslutsx.