I recently gave an interview to Alaina Leary at Bustle on the topic of disability representation within the publishing industry. Alaina’s final published piece is well worth a read. Check it out!
My full responses to the questions Alaina sent are below the fold.
Alaina: Why is it so important that actual autistic people are represented in media, and are able to speak for themselves?
Me: Media representations of autism are overwhelmingly terrible right now. The stock “autistic person” (excuse me, “person with autism”) is limited, stereotypical, and, frankly, boring. Meanwhile, all the really important decisions about our lives, such as whether we’re permitted basic rights to participation or self-determination, are decided almost entirely by people who get their information about us from these stock stereotypes. Autistic people need media representation, and a voice, so that we can participate fully in our own lives.
Alaina: What are some harmful themes in “To Siri” that you or other autistic people are wary of?
Me: While Judith Newman’s comments about retaining medical power of attorney so she can have her son sterilized without his consent have gotten a lot of attention (and rightfully so), I’m equally disturbed by the passage in which she makes fun of a friend’s attention to transgender realities and “jokes” about punching people over words like “cisgender.” It’s becoming more and more obvious that a disproportionately large number of autistic people are transgender or gender non-conforming, so to display blatant transphobia is yet another way Newman shows a rather callous disregard for actually-autistic people.
Alaina: Why do we need more #ActuallyAutistic and disabled people in publishing?
*deep breath* *climbs on soapbox* *polishes megaphone*
Publishers exist to sell books. Existing to sell books makes publishers conservative by nature: they will sell what has sold before to the audiences they already have.
Autism is big business right now, but the “big business” version of autism – the one that sells – is the limited stereotype we see in things like Atypical, and The Good Doctor, and yes, To Siri With Love. Until we can demonstrate that other stories of autism sell, we’re not going to get that story changed.
In order to get other stories of autism to sell, we need people in publishing and media who recognize that those alternate stories have value. Actually autistic and disabled editors are more likely to see that, because those “other stories” are also the stories of their own lives.
Alaina: What do you think publishers and media could do better to include and prioritize the autistic experience?
Me: They could start by including and prioritizing autistic people: as authors, as editors, as actors, as directors. As I recall, the team behind Atypical actually did audition autistic actors for the lead role, but decided that a non-autistic actor could play an autistic person better. Which makes sense only when you realize that they weren’t actually looking for someone to play an autistic person – they were looking for someone to play a non-autistic writer’s stereotype-based view of an autistic person.
Second, it’s all about background. Publishers and media could also better inform themselves on the autistic experience by reading our work. There are literally hundreds of prolific autistic bloggers out there, and more books by actually autistic writers come out every year. The best ones usually aren’t memoirs and may not even mention autism.
(Getting those books noticed is a marketing problem, and it’s one of my daily concerns as Autonomous Press’s author marketing gnome.)
Alaina: What are some ways that publishing houses could be more inclusive to autistic and disabled employees as applicants and employees?
Me: By adhering to the spirit of the ADA, not just the letter (or, in some cases, by actually adhering to the letter, which a lot of places fall short of doing).
This isn’t just a publishing problem, it’s an every-industry problem. Applicant tracking systems are often borderline inaccessible, buildings can pose physical barriers, the demand to do things by phone or in person can be overwhelming, and fluorescent lights are, of course, always a nightmare. “Common wisdom” on job interviews is deeply ableist and self-contradictory even for non-disabled people (make eye contact! but not too much! know about the company! but not that much or you sound obsessed! sound enthusiastic! no not like that!).
I’d love to see just one company, in any industry, look at its candidate search and selection process and say, “okay, if I were blind, could I really do this? If I were deaf, would this work? What if I couldn’t walk or drive? How else can candidates demonstrate their knowledge during this process?” Or better yet, ask actually-disabled people to walk through the process and tell them where it fails.
Alaina: Why is it important that publishers create a wide variety of books in different genres by autistic authors about the autistic experience?
Me: Because there’s no one “autistic experience.” There are commonalities among the experiences autistic people have, but there are also vast differences.
I often hear, as a response to complaints about stereotypical characters, “Well, no one character is going to represent every person with autism.” This response, given as pushback, misses the point of the original criticism.
It’s true: no one character is going to be Every Autistic(TM). That’s why we need more than one autistic character.
Yet what we have now is the same autistic character in every major book, TV show, or film: a white male in his late teens or early 20s, obsessed with some science-related minutiae that dovetails perfectly with his savantlike abilities, producing quips that border between funny and offensive, and on a quest to acquire a girlfriend despite not seeming to understand what exactly a “girl” is.
I’m sure autistic people like this exist. But the vast majority of autistic people are not like this. Using the same stock character over and over not only deprives most autistic people of representation, it also deprives entire audiences (autistic or not) of stories that reflect the actual world they inhabit. It makes us all poorer people.