Tag Archives: invisible disability

My Fantasy Wheelchair, Part 1.

My Fantasy Wheelchair by Suzanne Forbes June 20 2021I am very excited about getting a wheelchair.

As a person who has suffered from devastating fatigue for decades, the idea of assistance with the grueling business of walking is thrilling to me. Not to mention having my own place to sit, all the time!

I’m not gonna say any names, but I once bought a ticket to a Berlin event to draw, (even though I am usually guestlisted/VIP), only to learn it had been oversold and there were no seats left. I was about to leave myself, and head home bitterly disappointed, when a friend brought me a chair from backstage. Standing is not an option for many people, including me!

The idea that chair users hate being “stuck in a wheelchair” is an ablist myth.

I am on #DisabilityTwitter every day, talking to people who loooooove their chairs. Having a chair to be able to go places is a joy. People who have to measure and calculate their energy to get through the day, like many ambulatory wheelchair users, and me, need every scrap of energy they can save. Saving the vast amount of energy walking and standing takes is like winning the lottery!

The hardships of wheelchair use are generally caused by failure of accessibility.

With twenty million Long Covid survivors joining those of us who suffer disabling fatigue, vertigo, and shortness of breath, we might finally get enough #CriptheVote power to make an accessible world a priority. Certainly I expect market forces to drive chair and other mobility device innovation in the years to come.

What I really want is the “body bra” described in recent Kim Stanley Robinson books, or the “Frank” smart armature that beloved “Reamde” character Zula wears in Neal Stephenson’s otherwise terrible sequel, “Fall, or Dodge in Hell”.

Until I can have my smart armature to walk me around so I can save my energy to draw, I look forward to several generations of improving electric wheelchairs or scooters!

A note: when I found myself making this drawing rather in the style of artist Felix d’Eon, I leaned right into it!

Felix d’Eon is a former San Franciscan, a gay Mexican artist who makes drawings of queer love. Based in Mexico City and using his friends and community as models, he is an incredibly gifted figurative artist and designer. I think I styled my wheelchair picture like one of his pieces because his art gives me such warm feelings of inclusion and acceptance!

Please follow his new Instagram account, as the old one was unfairly suspended and he lost 114k followers! And visit his etsy store! twitter too!

I am incredibly grateful to my Patreon Patrons, whose monthly financial support makes it possible for me to continue making art as a disabled person.

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.