Tag Archives: invisible disability

My DSPS story: the boy at the mouth of the cave.

Night sky by Heather Hunsinger 2020

Night sky by Heather Hunsinger 2020

I am disabled across many axes. One of the most painful is my circadian rhythm disorder, Delayed Sleep Phase Syndrome or Delayed Sleep Phase Disorder.

It has caused me torment most of my life. Going to school, going to work, has been a nightmare from babyhood. I felt lazy, defective and also physically ill every time I had to get up before noon. Since that was most days of my life up to 2011, we’re talking about feeling like you have severe jet lag for about 7,000 days. Plus, shame.

I was nauseous and sick with pain one 10am at work at a startup in 2011; my nice colleague said a cheery “Good morning!” and I suddenly intuited that there was something physically different between us. I googled “can’t wake up in the morning” and instantly learned that there was something real that was different about me. I found a sleep doctor at Stanford, I kept a sleep log, I did a sleep study and got diagnosed; I was laid off my job and got a sweet year of unemployment.

I wrote this story after reading something about how DSPS, perhaps caused by a clock-gene mutation, may have served prehistoric cultures by providing alert night guardians.

I was so lucky to have a mother who was compassionate and accepting of my different clock; this is a story for parents like her to read to their little babies who are up at 1am.

Let me tell you a story.

Long ago, long ago before wheels and fields and lightbulbs, a boy sat in the mouth of a cave. Inside the cave slept everyone he loved. He sat at the mouth of the cave and added wood to the fire, and all night long the night spread out around him, vast and velvet and indeed, full of stars. He looked at the constellations in their moonset houses and he breathed in the stillness of that hour after midnight when the air stills and the night is suddenly warm. He ate from the bowl of food his mother had given him before she went to sleep.

And at dawn, he went inside the cave and shook his cousin or his brother’s shoulder, and slipped into the warm furs where they had slept while he kept watch.

Once, during the spring migration, they camped beside a band whose wise woman was a person like him. For those few nights, after the young women had brought them gourds of stew and baskets of berries and prized bits of honeycomb wrapped in leaves and then gone to bed, he sat up with the wise woman by the fire. They talked in the dark about the nighttime things that only they knew – the sound of the night hunters dragging home their prey, the sheets of ice on the lake cracking in the spring, the color of false dawn.

She told him about her oldest daughter, who was taken from the cave of the tribe she had joined one winter night by a saber-tooth. That tribe had no Night Person, and the watchman had fallen asleep and let the fire go out.

He told her about the night, during the Second Winter of No Game, when a cave lion with a dull coat and sharp ribs came softly softly to the mouth of the cave, and he flung a brand in its face and it bolted, and the sleepers never knew.

She told him about her youngest daughter, who was born a Night Person, and showed him the fine dowry of furs and beads and bowls and hand axes from the fortunate Southern band she joined.

And she told him about the meteor shower she watched alone as a young woman; she shook her husband’s shoulder, but he never woke.

The boy lived a long life, and he marked the courses of the stars in ochre on the cave walls, and when he died they wrapped him in the skins of night hunters.

*Beautiful photograph of the desert sky by Heather Hunsinger, 2020, used with permission. Visit Heather’s art site or follow Heather on Instagram for gorgeous nature photos, including an amazing series on raptors.

Crip The Vote!!

Crip The Vote art by Micah Bazant with disabled Marvel and DC superheroes by Suzanne ForbesFeat. art by Micah Bazant and canonically disabled and queer Marvel and DC superheroes!

I love this beautiful “Crip the Vote” image created by Micah Bazant, who describes it as follows:

Art created w wonderful disability rights organizer @disability_visibility who started the #CripTheVote hashtag in 2016 with @apulrang & Gregg Beratan. Ty @culturestrike & @iwillharness for support!

Image description: Illustration with large red text: “Crip the Vote” above two disabled queer people of color surrounded by flowers. One person is Black, uses a wheelchair and a ventilator, and has a drink with a plastic straw on her tray. A butterfly is resting on her wrist. The other person is Chinese American, fat and uses a cane. They are both smiling and radiating love.”

Crip the Vote art by Micah Bazant October 2020

Learn more at VotersWithDisabilities.org (link in @ndrnadvocate bio) & make a voting plan at bymaskormail.org

Crip The Vote art by Micah Bazant with disabled Marvel and DC superheroes by Suzanne ForbesThe art is used with consent!

Check Micah Bazant out here on Insta and here on their own site.

Crip The Vote art by Micah Bazant with wedding topper by Suzanne ForbesI wanted to hold up a sign myself!

I don’t have any 1/12 figures of myself, but I do have this wedding cake topper I customized with Apoxie-sculpt and paint and textiles when my hub and I were married in November 2014. I identify as #queercrip, which means I am sexually and romantically moved by all genders and am disabled. My husband doesn’t identify in any particular way, however he has a replacement hip so he qualifies as a cyborg!

We voted by mail as we live in Berlin.