We have this otherwise banal hymn we do every so often in Catholic Masses that has this rather amazing chorus in terms of the words:
We come to share our story,
we come to break the bread,
we come to know our rising
from the dead.
At first glance, there’s not much here, but it’s really everything about the Mass. For those who aren’t Catholic, we always do Mass in two parts (and we’re efficient as heck with it; when I was Lutheran, we didn’t do communion every Sunday, but when we did it took FOREVER, but I digress). So, the first part is always story-telling. We call it Liturgy of the Word. We read two or three sections of the Bible and share part of the Psalms. After the Liturgy of the Word, we have Liturgy of the Eucharist (the holy communion part). What’s really neat, linguistically, about a Catholic Mass, is figuring out where all the words come from. At one point, we had a poorer translation when it moved to English, for example, and said “Lord, I’m not worthy to receive You, but only say the word and my soul shall be healed.” Sure, that was LITERALLY what we were preparing to do (remember, Catholics believe that the Eucharist IS the body/blood of Jesus, not a symbol). Instead, we now say, “Lord, I’m not worthy that you should enter under my roof, but only say the word, and my soul shall be healed.” If you know your Bible, you’ll know this is EXACTLY what Zaccheus said when Jesus picked him out of a crowd, sitting up in a tree so he could see Jesus walk by. At every Mass, we tell our story, and we tell it over and over again.
If you’re a wordsmith, you can’t help to be fascinated by how various faith traditions share their stories whenever they gather together. It’s their story for them and also to explain to all comers.
I know I’m losing some of the non-religious of you out there, but stick with me. Let me tell you a little story that I saw recently. Have a look here if you want the whole thing. I must admit it originated in Buzzfeed, apparently, but I’m willing to buy it happened because it’s the kind of thing that HAPPENS.
So, Marlee Matlin, award-winning Deaf actress goes up for a role in which the character is (wait for it) Deaf. The role later goes to a hearing person. They later have the audacity to ask Matlin to coach the actress in “how to be Deaf.” What was interesting was, when this was posted on The Thinking Person’s Guide to Autism, the first comments were that “well, maybe she wasn’t the best fit for the part.” Maybe she wasn’t, but shouldn’t a Deaf actor play a Deaf character? Matlin would likely have coached a Deaf actress who was new or feeling apprehensive about how the hearing audience might “read” her Deafness even if she didn’t get the part herself. This would be an inoffensive request. But to ask her to help someone pretend to be Deaf, which comes with it a culture, a community, and even its own freaking language (btw, American Sign Language (ASL) is not “translated English”…have a look at this great story to get a feel for how the language looks, in print form: http://www.deafpoetssociety.com/raymond-luczak-prose; we were fan-girling (and fan-boying) over this in editing class; it’s a good story, not just a “gimmick”). So, yeah, it’s like saying, well, we needed a Black actress, but we decided a white actress would be fine here, and we’ll find some Black actress to teach her how to be Black.
So, it’s not cool.
But someone at The Thinking Person’s Guide to Autism posted a thought-provoking comment. Lindsay Porter talked about how this is no different than in writing, when some well-meaning people believe that a real actor (much like a “real writer”) should be able to inhabit the minds of anybody because if they’re a good enough actor (or writer), this should be possible.
When I read that, I realized that I should be able to forgive, just a little, my one writing teacher, who is deplorable. While she may be racist and ableist (and honestly, while we are all these things, we should, and many of us do, try our best to learn from when we mess up; suffice it to say…she doesn’t). Her problem is she’s bought into the narrative that you can (and should) imagine yourself anyone or anything and put that into your writing or acting. While it’s true that we can all probably benefit from trying to write from the perspective of another person, there’s a difference between private and public exercises in this venture.
What’s Wrong With white Authors Writing Black (etc.)?
Let’s have a little look-see at the book publishing industry. I like to use the children’s book statistics since this is normally where we can see the most effort being made since well-meaning children’s and teen’s teachers and librarians can be very vocal about the lack of representation in characters. So the Cooperative Children’s Book Center in Madison, Wisconsin, counts diversity in terms of People of Color and First Peoples books (FYI: First Peoples are not People of Color; they are another country within our country; it’s complicated). Here’s the list and explanation. In 2015, of the 3,400 books received at the center, they received:
· 107 books BY Africans/African-Americans
· 270 books ABOUT Africans/African-Americans
· 19 books by First Peoples
· 42 books about First Peoples
· 176 books BY Asians/Pacific Islanders
· 113 books ABOUT Asians/Pacific Islanders
· 59 books BY Latinos
· 83 books ABOUT Latinos
Even without delving into percentage-of-the-population arguments, you can see why there is a problem, right? Other than Asians/Pacific Islanders, each group is “talked about” more than it is allowed to tell its own story. The divide in African Americans and First Peoples is the most dramatic. More than twice as many books TALK ABOUT these cultures than are written by people FROM these cultures.
Admittedly, some books about cultures are well-done. Debbie Reese’s work at the American Indians in Children’s Literature blog is amazing. She does a lot of reading and reviewing and yes, often, people writing about Natives do it wrong, but there are some authors who do the appropriate work necessary to membercheck (check in with members of the population being talked about) and do, in fact, get it right. It can be done.
But 1) it’s a lot of work and 2) should they be doing this work? It’s one thing to use your privilege as (usually) a white author to help amplify the voices of others. This is good advocacy work, but we still have to think about the fact that Native authors, for example, might get silenced if a white person gets out with their story (no matter how well-researched) first.
Amplification is important, but self-representation is better.
This happens in the Disability community, too, as the Matlin story I mentioned earlier points out, and in children’s fiction when non-Autistic authors (Cynthia Lord, Jennifer Mathieu) write Autistic, it is lazy. Jennifer Mathieu researched her story with an Autistic character by checking in with a parent-of and an ABA therapist. Cynthia Lord is a mom of an Autistic, and the Rules story is from the perspective of her daughter (not her Autistic son, at least), but it’s always talking about the “burden” of having an Autistic brother. Maybe it gets better than the beginning, but honestly a child “learning to love her Autistic sibling” (I’m guessing that’s where it goes) is not a story we need. We need more stories written about us, by us. We will take stories written by not-us that check in with us (memberchecking), so long as they actually check in with us and not “therapists” (especially not ABA therapists which the Autism community has regularly decried as abusers) or parents, unless those parents themselves are Autistic (and there are a lot of us out there).
What Does it All Mean?
So, we need to be able to come together to share our stories. Our stories. Autistic stories. Disabled people are the largest minority group in the U.S. (20% or better), yet we almost never are allowed to share our own stories, get cast as actors, etc. And when I have a professor trying to tell me to NOT keep working on my story from an Autistic perspective, that’s not okay. Because currently, the dominant narrative about Autism (or any Disability) is that Disabled lives can be used as tools or crutches in stories; that we are depressed and all we ever do is wish that we were “normal” (see, eg. that HORRIBLE Me Before You movie/book; actually, don’t. Suffice it to say it’s ableist trash written by an ableist person and greenlighted by an ableist studio).
But we don’t wish that we were “normal.”
Okay, sometimes we do. But then we get back to reality. Reality means, we’re okay with our bodies and minds, even with their divergence from what we’re told is “normal.” We’ve learned what we’re good at (or are trying to; some of us have differences that make you not aware that you’re different and once you DO, there’s a whole story in trying to figure out what that means), and we’re okay with ourselves.
We just want to tell our stories to disrupt the narrative that has been perpetuated by society: that we’re broken and in need of fixing. We want to tell our own stories, and in so doing, we’ll be able to create a new narrative, one that blends Autistic and allistic perspectives about Autism into something closer to truth.
Because the fact is, allistic people have always had the chance to tell their own stories. Now kindly back off while we try to undo the damage you did by telling our side of the story.