Rare Life
August 9, 2021

3 Links: Representation, the Time Tax and Support

Featured imageA green alarm clock with a white background.
Photo by Abdul A on Unsplash.
This week, Finding Dory and disability representation, how the time tax relates to rare disease and profound insight on giving and receiving support.

Hey, Check This Out! is a list of content curated with the rare disease community in mind. Have a link to share? We’d love to see it. Contact us on Twitter, Instagram or Facebook and let us know what you’re reading, listening to and watching.

Representation and Finding Dory

Back in 2017, writer Elizabeth Picciuto examined the depiction of cognitive and physical disabilities in the sequel to Finding Nemo. “Finding Dory is hardly the worst portrayal of disability, even out in theaters right now,” she writes. “... But sadly, it may have been a significantly better representation of me—that is, a parent of a kid with disabilities — than of a character with disabilities.”

Paperwork, aggravation and mental effort

According to writer Annie Lowrey, the time tax in America is “a levy of paperwork, aggravation, and mental effort imposed on citizens in exchange for benefits that putatively exist to help them.” Lowrey continues: “The time tax is worse for individuals who are struggling than for the rich; larger for Black families than for white families; harder on the sick than on the healthy.” Anyone who’s struggled to secure a 504 or IEP or made repeated calls to a health-care provider’s billing department — and had to explain a rare condition — will experience repeated flashes of white-hot recognition.

Support: ‘There’s no right or wrong way to go about it’

Sarita Edwards, founder and CEO of Everyone Is We, is also the host of “Being Rare,”a “community conversations platform bringing awareness and exposure to several different topics,” including rare disease. Edwards alternates between bite-size and full-length episodes on topics like balance, shifting resentment into gratitude and expectations from health-care professionals. A July 12 episode is called “One Minute Monday - Support” and manages to include several profound, actionable pieces of advice in just 60 seconds.

No items found.