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Indigenous spoonies: Navigating the healthcare system with invisible disabilities

For Indigenous journalist Jen Deerinwater fighting racism and ableism is a dual fronted battle that never gets easier, especially when doing simple day-to-day tasks is a struggle.
Jen Deerinwater lives with multiple disabilities, many of which aren’t visible. She is a journalist, a citizen of the Cherokee Nation of Oklahoma and the founding executive director of Crushing Colonialism. (Eleanor Goldfield)

For Indigenous journalist Jen Deerinwater, fighting racism and ableism is a constant battle, often fought alongside the struggle of accomplishing day-to-day tasks.

Deerinwater identifies as a "spoonie," a term coined by disability activists for people who live with disabilities or chronic illnesses that aren't visible. 

"The spoon theory uses spoons as a unit of energy," said Deerinwater, the executive director of the multimedia organization, Crushing Colonialism.

"Say you start off each day with 10 spoons. Well, one spoon can be gone just from getting up and making your breakfast," Deerinwater explained. "Basically everything that we do throughout the day uses a spoon of energy, and eventually you're just out of spoons."

Deerinwater identifies as disabled person who suffers from chronic pain, mobility issues as well as autoimmune diseases.

She said Indigenous people with disabilities often face more barriers than non-Indigenous disabled people, due to being discriminated against for being both disabled and Indigenous.

"There's just like a whole host of forms of discrimination under something called 'ableism' that disabled people just run into all the time," Deerinwater said. 

Ableism is a type of discrimination and social prejudice against people with disabilities or who are perceived to have disabilities. Something Deerinwater said often becomes an issue when seeking healthcare. 

"There's just this idea, kind of by the entire world, that if you're disabled, you're just not worth anything. You're just meant to be thrown away, to be put in a nursing home or some kind of institution, to die quietly out of the line of sight of the abled," she said. "And unfortunately, some of that mentality is alive and well within Indian Country in the U.S." 

She said that accessing non-Indigenous healthcare comes with its own issues such as cultural incompetency or insensitivity, and has been the victim of racist remarks from healthcare providers.

"It is not uncommon for me to go to doctors' appointments and have doctors just say really racist things about my last name, about my Indigeneity," said Deerinwater, a member of the Cherokee Nation of Oklahoma. 

As someone who suffers from chronic pain, Deerinwater said she has had to face assumptions such as being a drug-seeker, or that her disability is a mental illness.

"How do you get pain management care when that's the immediate assumption that everyone has about you?"

Deerinwater said that she believes healthcare needs to be recognized as a human right, and not a for-profit business.

"We need a complete overhaul of our healthcare system here," she said. "Indian Health Services, including urban Indian healthcare, must be funded."

"We need people who are going through nursing school and medical school to actually be taught about Native people and about our needs," she said. "We need people to understand racial justice and disability justice and the way all of these things work and the way they prioritize certain people."

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