Hi all! It’s Jay. I do a link roundup (almost) every Friday. If you encounter a chronic illness-related link you think I might want to share, please tweet it at me or Chronically Lit.
A ride attendant who had been working the Spider-Man ride rushed up and told Koppelman it was all right for Ralph to stay where he was.
“She got down on the floor WITH HIM,” Koppelman wrote. “She rested next to him while he cried his heart out, and she helped him breathe again. She spoke to him so calmly, and while he screamed and sobbed, she gently kept encouraging him to let it all out.”
The Washington Post reported on a good Samaritan Universal Studios employee who laid down next to an autistic boy having a meltdown about a ride that was unexpectedly closed before he could write it, helping him in a way his mother had never seen from a stranger before.
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According to the U.S. Census Bureau, there were nearly 40 million Americans living with a disability in 2015, and the National Park Service conservatively estimates that a minimum of 28 million visitors with disabilities from all over the world visit national parks annually. Making sure that everyone truly has access to all 419 NPS sites is an ongoing battle fought daily by activists, outdoors organizations, and the Park Service itself.
Alexandra Charitan wrote about the National Park Services’ efforts to become more accessible for Roadtrippers.
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Lewis asked the man how he was doing. “I’m good, I’m good,” he responded. Lewis said how he’d noticed he seemed on edge recently. Same response. Lewis kept asking questions until the man eventually took off his mask. “I’m hurting,” he said. “I’m just really going through something right now.” When asked if he was feeling suicidal, the man nodded.
In Yes! Magazine, Celeste Hamilton Dennis wrote about barbershop-focused mental health initiatives, in which men getting their hair cut may talk about their problems and receive support.
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You’ve probably seen examples of these kinds of “useless products for lazy people” before. Things like banana slicers, egg separators, jar openers, buttoners, tilting jugs for dispensing liquids, and much more are the subject of constant amusement on the internet: “Who uses these kinds of things?” “You don’t need an avocado slicer.” These products are typically positioned as “useless” in scathing roundups of products no one could possibly need, representing little more than wastes of plastic and resources.
For Vox, s.e. smith wrote about how products that are routinely mocked as being for people who are lazy are actually important to many disabled people.
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In the opening sentence of her 1926 essay “On Being Ill,” Virginia Woolf observes, “Considering how common illness is…it becomes strange indeed that illness has not taken its place with love, battle, and jealousy among the prime themes of literature.” In literary terms, this may not come as a surprise—the tension of illness narratives seems like it would be mostly internal, and therefore difficult to show in scenes. The action, depending on the illness, may be boring to readers, and most of all, suffering, especially chronic suffering, doesn’t always have a satisfactory ending.
Ellen O’Connell Whittet wrote about the “narrative messiness” of chronic illness for Ploughshares, referring to multiple illness memoirs.
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There are two prevailing cancer stories we hear about: the one where someone lives and the one where someone dies. There is, in the cultural narrative of the disease, little room for anything else. We forget there are many kinds of cancers, that each one manifests itself differently in different bodies, that no two cancer stories are ever alike. For every tale of “winning the battle” or “losing the battle” with cancer, there are many more about recurring cancers, low-grade tumors that don’t respond to treatment, or cancer that recurs and metastasizes when it was never supposed to. “There are plenty of real people with real cancer stories,” wrote Boing Boing’s Xeni Jardin in response to the Amanda hoax. “No need to invent fake ones.”
But for some reason, people don’t want the real stories. They want a palatable cancer narrative just like Amanda’s: one that makes them contemplate Big Life Questions without feeling any discomforting side effects.
For bitch, Sara Black McCulloch asks, “Why is it so Uncomfortable When Women Challenge Traditional Cancer Narratives?”
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That’s the finding of a study published today in JAMA Internal Medicine, which concludes that, among middle-aged women, a history of sexual assault was associated with higher rates of depression, anxiety, and poor sleep. A history of workplace sexual harassment was associated with clinically significant sleep problems as well as increased odds of high blood pressure and higher levels of triglycerides, a type of fat in the blood. The latter two are risk factors for heart disease, the number-one killer of women in the US.
In Vice, Susan Rinkunas reports on research showing that sexual harassment is associated with future illness.
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Physicians tend to “dismiss women’s pain a lot more than they do men’s,” says Penney Cowan, founder and CEO of the American Chronic Pain Association. According to a 2014 online survey of more than 2,400 U.S. women with a variety of chronic pain conditions, 91 percent felt that the healthcare system discriminates against female patients. Nearly half were told the pain was all in their head.
I’ve known for a while that women’s pain is often dismissed, but reading it in Consumer Reports feels big. Good work, Maya Dusenbery!
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If you Google “How to convince someone with schizophrenia to get treatment,” you discover a vast network of distraught families grappling for answers. When met with resistance by a person in the grip of psychosis, experts advise, try to work around rigid beliefs rather than attempting to dismantle them. Don’t argue with delusions, and don’t focus on points of contention. Listen respectfully and empathize.
Marin Sardy wrote about her brother’s schizophrenia for The New Yorker.
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But talking on Facebook was a different story. Online, I could communicate without those worries about non-verbal cues; I felt free in a way I never did during first-person encounters. And ever since Dave and I got married in 2010, I’ve remained convinced that we wouldn’t be together if we’d met in any other way.
Jennifer Malia writes about how social media helped her date as an autistic woman for The Cut.
Jay Vera Summer is the Editor in Chief of Chronically Lit.
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