Image text: Chronically Lit’s Link Roundup: the best illness writing online
Do you remember the hospital rooms? Look: I am sitting in a corner, playing Pokemon Blue and cackling over my pink GameBoy Color. Nurses pin you down as you screech, drawing blood you barely have. I do not know, then or now, why they do this. Our father is with them. Our mother films this, intent on using it to teach you, something called a Social Story to acclimate you to new situations. This is how I remember these details, years later: I don’t.
Perhaps it is the knowledge that you and I are bound by more than blood; that your pain flows through me, too; that as children we are powerless and as adults we know too much. If I could have helped you, I would have. But I was eight or nine, and you were younger, and did I understand what was really happening? Except I understand now what I could not then, that our parents were desperate, that they were unaware then of the extent of the pain they caused you, caused us. It does not absolve them, and I cannot forgive them for you.
In a braided essay in The Rumpus, Naseem Jamnia writes about aspects of their childhood spent grappling with having an autistic brother and dealing with gender issues and mental health issues. This is the type of writing we hope to receive more of.
The worst part? In the wake of the LA Times expose, writers are tweeting “red flags” for scammers, including — you guessed it — someone talking too much about their chronic illness. Because Anna did it.
Chronically ill people already face stigma when we talk about our illnesses. Now we will look like cons. Because Anna stole that space from us–just like she stole that space in Modern Love for a disabled writer to tell a love story.
A little over a month ago, the exposure of Anna March as a fraud shook the literary world. On her blog, Karrie Higgins reflects on the Modern Love essay March had previously written about her then paraplegic boyfriend, and March’s pattern of using chronic illness and the disabled for her own professional gain.
There is a lot of money to be made in exploiting people with disabilities, and after decades of work by disability rights activists to fight for our right to participate in much of civic life on our own terms, those who would make money exploiting us have hired lobbyists to return us to the days when our labor was deliberately undervalued for their profit.
This NBC Think article by Rabbi Ruti Regan really did get me thinking. Years ago, I worked at a senior day center for developmentally disabled people who had retired from their manual labor jobs, which took place in another part of the same building, and were run by the same non-profit company. These jobs were extremely simple–if my memory serves me correctly, the workers were slapping stickers onto pieces of cardboard. There was no minimum quota per hour or day, people became retired when they decided they didn’t want to work anymore, and the only time I heard of a worker being fired was when one was violent toward another.
It never crossed my mind that those workers were possibly being exploited. It also didn’t occur to me to think of them as “workers” (the company that employed me called them “clients”). I couldn’t imagine any of them being able to work at any traditional sort of job. Someone had deemed them all to need 24-hour support staff, with many needing assistance eating and going to the bathroom. For them to earn any paycheck, even one well below minimum wage, felt like a charity being provided, a favor, which is why this line in the article hit me hard:
Representative Glenn Grothman, who introduced ACCSES’ legislation, explained at a recent Capitol Hill briefing that we advocates and people with disabilities “just don’t understand” why [the need to rollback Obama-era disability protections is] necessary, and that “no one would work in these work centers who didn’t truly care about serving the differently abled.” This objectification speaks volumes: He does not see work center employees with disabilities as people with jobs but as objects being worked on by the real employees.
The latter sentiment is exactly I held while I worked at the senior center, although I didn’t consciously recognize it. I applied for that job because I cared about the developmentally disabled and wanted to help. I now realize I and my coworkers at the time held attitudes that were patronizing and capitalistic. We didn’t view the “clients” as workers, even though they were doing work that clearly benefited some company that partnered with ours. Any time we talked about their “job,” “work,” or “retirement,” the words had implied air quotes around them–the work wasn’t viewed as real, like our work, or other work of the able-bodied.
I’m admitting this because I think it’s important to recognize and admit biases, whether they relate to race, sex, age, disability, or some other quality. It’s important to listen and be open to growing and changing. This article helped me do that, is helping me.
If someone had told me I was biased against the developmentally disabled back then, I would’ve become defensive. I could’ve found a much easier job that paid more, but I took that job because I wanted to do good in the world. If someone had told me my company helped exploit disabled people, I would’ve thought it was ridiculous–I probably would’ve asked, aren’t our clients better off working for small amounts of money and being able to feel productive, deal with challenges, and have days full of human interaction, than they would be not working and sitting in a group or nursing home?
I’m extremely grateful to have come across this article. How short-sighted of me and of our culture as a whole to think sitting around doing nothing or being paid pennies for labor are the only two options. This article was a humbling read for me, but necessary. I do not want to be a trapped in a capitalistic mindset that measures people’s worth by their productivity. I do not want to hold patronizing beliefs about any disabled people. Final quote:
In other words, Muderick prefers to employ people who have so few options that they are grateful for any job on any terms, exploiting the financially vulnerable and dressing it up as a virtue. Murerick would have us believe that people with intellectual and developmental disabilities have found their purpose in life in working for him on terms that he would never accept for himself.
My mother seemed proud she was able to disconnect from consciousness for even a little bit. I was proud of her, too. As people who have praised the other for waking up at 5 AM to work out, it felt good to revel in mindfulness for a change. And despite our past brushes with anxiety, we’d never really discussed the issue at length until now. In Angelo’s office, as I explained how watching Olympic gymnasts pushed me toward a panic attack in the summer of 2012, an event which resulted in a series of middle-of-the-night texts to my mother, I realized I’d never actually explained why I feel the way I feel (even if the reasons are hinged on slightly neurotic obsessions). The same was true for her. I’d never heard her verbalize how being a single mother had impacted the way she viewed herself and thus behaved. Attempting hypnosis allowed us to discuss these things more freely.
Allie Volpe’s “I Did Hyponosis with My Mom to Try and Cure Our Shared Anxiety” in Broadly also hit me hard, for reasons I do not care to share. And, yes, of course I want to be hypnotized now.
We might know how to accommodate hearing, vision, or mobility impairments on campus, but chronic pain conditions, autoimmune diseases, and rare diseases present very different challenges. Consider the student suffering from flares of Crohn’s disease or lupus, who may appear healthy one day, but whose symptoms are completely incapacitating the next. How do we accommodate students who can’t make it to class for longer stretches, have frequent medical appointments or disruptive hospital stays, or whose medications may make them drowsy or fatigued even when they are present?
Laurie Edwards writes about chronic illness in higher education for WBUR. As a college instructor who was a grad student in the not-so-distant past, this article felt super important to me.
Conversion therapy is also still widespread—it is legal in 41 states in the United States, despite being decried as deeply unethical and completely pseudoscientific. A 2018 report by The Williams Institute at UCLA estimated that 698,000 LGBTQ adults have received conversion therapy, and that 57,000 youths (ages 13-17) will receive it by the time they reach age 18.
Nicole Clark writes about the film Miseducation of Cameron Post, which is based on a true story of a teenager whose parents sent him to conversion therapy camp after he came out as gay, for Vice. It’s so tragic and damaging that enough people view being LGBTQ as an illness for these “therapies” to be legal and so widespread.
Launched in April 2017, Awesome Disability is an independent chapter of the Awesome Foundation, a global community that provides micro-grants with no strings attached. The trustees of Awesome Disability are people with disabilities that want to support ideas and projects in our community.
Have a disability-related project you could use $1,000 for? The Awesome Foundation Disability Grant is, well, awesome. They’ve funded a variety of projects, and you don’t have to be a 501(c)3 to be eligible to apply.
The neurodiversity movement is about recognizing the legitimacy of different kinds of minds, including those belonging to autistic people, people with ADD/HD, dyslexia, bipolar, Down syndrome and many others. As a part of the disability rights movement, neurodiversity is about fighting for inclusion, legitimacy, accommodation and equality of opportunity for people with all different kinds of brains.
NOS Magazine is one of the projects that was funded by the Awesome Disability grant. Sara Luterman founded it in an effort to promote recognition of neurodiversity, and their articles focus on the representation of neurodiversity in current events and entertainment.
Jay Vera Summer is the Editor in Chief of Chronically Lit.
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