Disabled Gremlins Unite: The Story of an SMA Friendship
Ever the dry self-deprecator, I send my Chinese New Year column to my dear friend Brianna with a message stating, “I sound like a gremlin here. Which is fine with me.” (Translation:…
Columns
3 Melatonin Pills a Night Keep the Hallucinations at Bay
I see things that aren’t there. The writer in me realizes that, at first blush, this sounds like the opening line of a young adult novel. Take, for example, Maggie Stiefvater’s “The Raven Boys,” which opens with, “Blue Sargent had forgotten how many times she’d been told that…
An SMA Patient and a Pulmonologist Comment on the COVID-19 Vaccine
My wheelchair van pulled up outside of a vaccination clinic downtown where I would receive my first dose of Moderna’s COVID-19 vaccine. This was one of my biggest outings in over a year. Like many in the SMA community, I made the choice to limit…
A Sibling’s Perspective on Life With SMA
On April 10, the United States will celebrate Siblings Day, a day to honor and appreciate the bond we share with our siblings. I happen to have the best one around, so I asked if he’d do an interview with me to share his perspective on living with…
When Life Feels Unbalanced, I Look for Harmony in the Intricacies of Spring
In North America, where I reside, an equilibrium springs forth this time of year. Because of the spring equinox, the dance of dominance between daylight and nightfall is at a point of viridescent intermission. The sleep-wake cycle rises and sets in mutual agreement. Together, the crescent moon…
How to Build and Maintain a Network of ‘Masked Advocates’
In my previous column, I shared how sometimes our advocates come from the unlikeliest of places. Yes, even politicians, who some believe are the embodiment of greed and corruption, can make an enormous difference in our lives. The mystery senator I spoke…
The Sounds of Silence: Sometimes Deafening, Sometimes Golden
BARK! BARK! WOOF! WOOF! The guest staying in our rental cabin had come down to the house. Our dogs, Honey and Maple, were banished to the kitchen until our guest returned to her car after a brief visit. I sat down to get back to work.
‘I’m Not Broken’: Examining How Disability Is Portrayed in ‘Zack Snyder’s Justice League’
On March 18, the gargantuan blockbuster of a superhero movie known as “Zack Snyder’s Justice League” arrived on HBO Max. With its multiple storylines, ensemble of main characters, staggering four-hour run time, and history of controversies and triumphs…
Unlike Hamilton, I Threw Away My Shot
My first instinct was to scream. After weeks of waiting, and days of researching clinics and time slots, I finally received the prized text message: “Brianna and 2 caregivers have been selected for the COVID vaccine.” I screamed, then sent an all-caps message to a group chat with friends…
What the Ancient Greeks and Architecture May Tell Us About Accessibility
The August 2020 issue of the archaeological journal Antiquity contained a fascinating look at ancient Greek architecture titled, “The architecture of access: ramps at ancient Greek healing sanctuaries.” It was written by Debby Sneed, a classicist…