On May 29, 2007, journals and communities began disappearing from LiveJournal. Missing journals and groups were unclickable, muted, and crossed out with a single line font effect. To a banhammer, every query seems like a nail: Rape depictions are gone, but so are posts from rape survivors. The same applied to incest, abuse and violence. The ensuing exodus of users led to the founding of DreamWidth, Archive of Our Own, and Organization for Transformative Works. Today, all three are still operational.
While it’s still unclear what exactly happened to Renee’s doctors, or if it’s just a fluke, the effects of mishaps like this are complex. Although now commonplace, there may still be concern about allowing large corporations to store personal writings. For authors writing about sex, for example, or about queer people trying to find a voice, hearing that their content could be flagged as “inappropriate” can have a chilling effect. The problem, says best-selling pseudonymous author Chuck Tingle, is that companies like Google now operate like public utilities. “It’s the same as water and electricity,” he says.
Tingle would know: his “Tinglers”, erotic pieces that he publishes as Kindle Singles, led to him landing a contract at Macmillan for queer horror novels. Damascus Camp and Bury your gays. Those early singles were written without the help of publishers, often in a matter of hours. They are careless. “They’re punk rock,” he says, but they also helped him build a community around the “underdog genres” of erotica, horror and comedy to which his work belongs. If Amazon decided to stop selling his Tinglers, it would be a blow, although he now has a book deal.
Appropriate It is a word with two uses and meanings in common language. The first is as an adjective, as in the message Google sent to Renee. Describes suitability in context, fitness for purpose. The second use is as a verb and is much closer to the original Latin. appropriatewhich means “to make one’s own” or “to take possession of.”
Whether we are talking about the “appropriation” of cultural slang or real estate, we are referring to a transfer of ownership. But both meanings of the word arise from that Latin origin and its antecedent, the word private: the word that generated (among others) the words private, propertyand appropriate. All of these words came from the same source and, in one way or another, they all describe qualities of belonging.
This is a story about belonging.
Accessibility, infrastructure, and organization are important to Renee as a writer and as a person in daily life. She tracks more than just word count: she tracks meals, moods, and medications. “We have to be organized,” she says.
When she says “we,” Renee is referring to her disabled peers. The first time one of her patient portals experienced a privacy violation and sent her a letter about it, she was 16 years old. By then, she had had to quit hockey and move from the ice to the bench to the couch. “I always have pain. That’s part of my illnesses. That’s going to be my life. I have come to terms with that. I have accepted it.” She meticulously tracks her symptoms in part because the quicker they finish her appointments, the sooner she can get back to bed.
“Listening to me now, you wouldn’t know that I have a chronic illness and a disability,” Renee says. “You can’t really see it either. “My illnesses, my diagnoses, are invisible.” For this reason, Renee has experienced disbelief and surveillance when she uses a cane, a wheelchair, or forearm crutches when she is in her twenties. She has written similar moments in her fiction, such as a scene in which a character is questioned because one day she is in a wheelchair and the next she is not using it.
Renee believes her work opens conversations about disability and the perception of disability. Until Google Docs blocked her, she had her data to support her hypothesis, in the form of long comment threads between reader and author. She remains the target of her published work. “If even one person questions” her thinking about disability, she says, “I feel like my writing has done what it was meant to do.”
