Link Roundup: August 17th, 2018

Hi all! It’s Jay. I plan on doing a link roundup every Friday and this is the fourth one. If you encounter a link you think I might want to share, please tweet it at me or Chronically Lit.

chronically lit link roundup
image text: “LINK ROUNDUP via Chronically Lit: Sharing the best chronic illness-related writing on the web”

A lifetime of playing “I’m fine” couldn’t be undone in one doctor’s visit. It would take several more years, more attacks and more trips to the emergency room to convince me that this was not something I could tough my way out of.

Did you know The New York Times has an opinion section dedicated to essays on disability? The quote above is from “Actually, I’m Not Fine” by Sunny Fitzgerald.  Most recently, they tried something different and published works of art, and poems by ten people with disabilities.

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I discovered that funding for Medicaid varies widely by state, creating huge hurdles for sick and disabled people like myself who need to move to another state, especially those of us who need in-home round-the-clock care.

Speaking of The New York Times, they also recently published a fascinating but sad “Op-Doc” (Op-Ed in the form of a documentary) by Jason DaSilva. DaSilva has MS, and is trying to find a way to move closer to his young son, in Texas. His documentary exposes the vast differences in disability resources offered by different states.

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What if SHM symptoms surface [sporadic hemiplegic migraine] when I am in a taxi or simply walking down the street in a city where I don’t speak the language? What if my vision blurs and half my body goes numb when I am in the middle of interviewing someone in a foreign country where it is culturally and professionally unacceptable to excuse myself? What if the next time I experience SHM symptoms, it actually is a stroke and I am too far from a hospital to get proper treatment in time?

This quote is from another essay by Sunny Fitzgerald, this one in Mic. It’s exciting to see publications that I wouldn’t expect to run essays on chronic illness run essays on chronic illness. In this essay, Fitzgerald focuses on what it’s like traveling with her illness.

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So, when I heard that WeWork, a real estate company that owns co-working office spaces around the globe, was instating a new vegetarian policy—effectively eliminating meat, poultry, and fish from their catered offerings and events, and no longer allowing its employees to expense out any meals containing meat—my stomach churned. I asked myself, “Is this ableist?”

As someone who eats vegan, I like the idea of companies incentivizing vegetarianism/veganism, so if I’d heard of this WeWork policy elsewhere, I probably would’ve viewed it as a positive thing. I’m glad I read the Bust article by Sarah Epstein first. It’s a good reminder to think intersectionally, and a good reminder that incentivizing and dictating are two very different things.

At the same time, I couldn’t help but also ask the flipside question–is not offering vegan options, aka the default catered lunch, also ableist? It seems easy to say “That’s ableist” when a change is being made, but as someone who’s been vegan and gluten-free for health reasons, and who’s had zero luck with professional environments catering to my diet (fruit platter aside), I think the standard food available can also be considered ableist. It depends on your point of view and dietary restrictions/requirements.

So many different illnesses require different and often conflicting diets–sugar-free, caffeine-free, low-salt, high-salt, low-FODMAP, gluten-free, dairy-free, nut-free, soy-free, low carb, low protein, high protein, etc.–that it’d probably be impossible for businesses to accommodate all of them when catering. How to determine who gets their needs met and who doesn’t? Wouldn’t every diet be ableist to a different group? This feels like a topic that is sensitive but worthy of discussion–consider leaving a comment on it, or submitting an essay on the topic.

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“How do you bear it? That must be devastating,” a colleague said, pausing over his chicken salad sandwich. I’d mentioned that my husband was a quadriplegic—always a risky choice. That is, if I want lunch to be short.

The lunchroom was too noisy, anyway, to explain further. My coworker read my near silence as an admission (of what, I’m never sure: sexlessness? Solitude? Nights spent gripping a bottle of gin?), and said, earnest, “I’m so sorry you have to go through that every day. I can’t even imagine.”

This Laura Dorwart essay about people’s reactions to her having a quadriplegic husband (in Catapult) is excellent. It provides a glimpse into what it means to be an able-bodied partner to a disabled person. It’s also a well-written reminder that pity is not empathy, kindness, or understanding–it’s condescension.

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“I was initially afraid that there would be a lot of rude comments, since disabled models aren’t really a thing,” she says. “Instead, I was overwhelmed with support and love and so many people saying how much it meant […] that they had someone that looked like them, or had the same chronic illnesses as them, in big media.”

Part of me hates to promote any clothing brand here, but what Halie Lesavage (in Glamour) reports Aerie Real is doing is pretty cool.  Their latest fashion campaign models include “a cancer survivor, a woman who uses crutches, a woman with a colostomy bag, and a woman with an insulin pump…” The above quote is from model Abby Sams.

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This resource is specifically designed to help editors connect with disabled people working in journalism, or trying to break into the field. For the convenience of journalists and editors, it also includes disabled experts who are available to serve as sources, such as attorneys, physicians, social workers, and others with professional experience or education that makes them expert sources in their fields.

Do we have any editors or journalists in the audience? I recently learned of Disabled Writers, a really cool resource for those involved in disability in journalism. It’s maintained by s.e. smith and funded by the Disability Visibility Project. The site has databases of disabled journalists and disabled experts (to use as sources when writing) as well as overall useful information. Journalists and experts may submit their info to be considered for inclusion in the database.

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Though person-first language is designed to promote respect, the concept is based on the idea that disability is something negative, something that you shouldn’t want to see. After all, no one tells me that I should call myself a person with femaleness or a person with Jewishness. I’m a Jewish woman. No one questions that. Yet when I dare to call myself a disabled person, it seems the whole world turns upside down. That’s because gender and religion are seen as neutral, if not positive, characteristics. The idea of separating the disability from the person stems from the idea that disability is something you should want to have separated from you, like a rotten tooth that needs to be pulled out.

Disability Writers links to “I am Disabled: On Identity-First Versus People-First Language” by Cara Liebovitz, and multiple other articles on the topic of disability language. I read through these with such interest. When I was a college student, I worked with a teenage boy with autism. Both he and his parents wanted me to say he was a person “with autism” rather than “autistic,” because they didn’t want his autism defining him. In an attempt to be a more respectful person, I began applying this person-first language to all people with disabilities (like that). After training myself to say “with disability” instead of “disabled,” people-first language began to feel natural to me.

At some point, I came across a post (cannot remember which one–none of the ones posted here) arguing for identity-first language. I’ve started using that more, saying people are “autistic” or “disabled” instead of saying they are people “with autism” or “having disability.” It doesn’t always feel natural to me, however. And since I know different people prefer different styles (and, often find the style they don’t prefer somewhat offensive), I’m noticing I feel self-conscious when I say either because I don’t want to offend. I’m curious–if you have an illness and/or disability, do you prefer identity-first or people-first language? Is it something you’ve thought about or talked about? Leave a comment.