Book Review: All the Weight of Our Dreams (Lydia X. Z. Brown, E. Ashkenazy, and Morénike Giwa Onaiwu)
Reviewed by Michael Northen
Even in the relatively new field of disability literature, it has become very unusual for of a book to be the first of its kind, but Lydia X. Z. Brown, E. Ashkenazy, and Morénike Giwa Onaiwu's All the Weight of Our Dreams can make that claim. Subtitled "on living racialized autism," this hefty anthology gathers together the non-fiction prose and poetry of autistic people of color.
The title of Onaiwu's preface to the book, "Autistic's of Color "We Exist…We Matter" sets up the keystone around which the anthology is structured. While some anthologies set out to prove that the writers included deserve a place in the literary world, the editors of All the Weight of Our Dreams follow in the tradition of John Lee Clark's Deaf American Poetry, in allowing the work to be a raw assertion that the writers whose work they feature are out there and have something to say. The result is that the volume's bulk is an important statement in itself and that it is the collage-like effect rather than any particular theme that creates the voice.
As any elementary school teacher knows, if you want students to produce writing, the best way to allow them to express themselves is to hold off on the formal mechanics and simply let them write. Brown's "A Note on Formal Process" that begins the book explains that this is the approach the editors have taken in working with the authors who contributed to the book. It's an approach that dovetails with the major purpose of the book which is simply get the voices of autistic writers of color out there. The "Note" bears reading by any editor working with marginalized writers and some of the advice, such as being explicit with writers rather than saying unhelpful things such as "this is unclear," should really be applied across the board.
While the book emphasizes the diversity inherent in the world of autists of color and pushes back strongly against the notion that one image of autism fits all, common concerns and experiences among the writers do rise to the surface. One of the most obvious is that if being either disabled or non-white is difficult in our society, then being autistic and a person of color is exponentially so. And this is not limited simply to Donald Trumps' United States. In fact, the editors go to some lengths to bring in the work of writers from countries other than the U.S. As the Filipino writer Hargenslasher* points out, because of certain cultural values, life as an autistic person in the Philippines is even more difficult. Perhaps more surprising, several writers tell us, is that even people with other disabilities tend to have biases against those who are autistic.
Another theme that emerges is that while many people who are autistic cannot escape the fact the fact that they do not present as neurotypical to mainstream society, those who are able to "pass" are presented with a host of different problems. Chief among these is the fear of having their diagnosis revealed and its effect on their jobs and social life. Joseph Juarez's essay, "Understanding the Challenges Facing Autistic Students in Higher Education" speaks specifically to this issue and the difficulty of trying to navigate life on college campuses. It means the pressure to hide those aspects of your life that mark you as a person with autism. Juarez cites the example of a fellow student who was unable to do this and whose quirks of behavior were perceived as sexual advances by female students and he became the subject of investigation by campus authorities. If students are successful in passing, either their diagnosis is disbelieved or they suddenly become a hero simply for accomplishing daily routines.
While these are some of the themes that emerge from the various writings, just who the intended audience of the book is, is not entirely clear. Each of the editors has their own preface, foreword or introduction. Brown's introduction begins "We have the right to exist as we are without fear of violence." Since this is surely self-evident to the contributors to the book, Brown cannot be addressing the autism community. Ashkenazy's foreword closes by asking, "So what can we do as parents, family members, friends, service providers, and community members." This puts a bit more of a face on the audience. I think it is likely, though, that Onaiku's preface comes closest to the books true intended audience. Refining Ashkenazy's definition, she says: "They are our friends. Our colleagues. Our neighbors. They want the best for us. And yet their perspectives are so obscured by their own intrinsic privilege with regard to race and ability that they don't understand. Can't understand."
It's statement without malice, but given its conviction, perhaps All the Weight of Our Dreams can best be viewed as a Hail Mary that the editors are hoping someone downfield can catch.
With more than a hundred pieces included in the volume it is difficult to know just which ones might find a receiver on the other end, but here are some that seem to me most likely.
Many of the pieces in the book fall under the category of life writing and life writing is always about how to structure the image the writer is trying to project, so two essays that are interesting to compare are Stephen B's "My Experience" and editor Morénike Onaiwu's "Why I Came Out of the Autism Closet." There are a number of ways that the stories parallel, yet the conclusions they draw from their experiences differ somewhat. Both discovered at an early age that they felt different. This was not necessarily bad. As Onaiku says, "Some of the ways that I was different were things that were pretty cool. Like the way I could easily remember and reproduce much of what I'd seen or heard; the way I could figure things out stumped people."
For his part, Stephen B says that he was always considered intelligent and got good grades. However, both found adjusting to social norms and situations difficult. Complicating Stephen's autism was the fact that he was a dark-skinned Puerto Rican attending school with neurotypical white kids who bullied him for talking "like a robot." His reaction was to fight. He was kicked out of several daycares and elementary schools. As time passed, though, Stephen mellowed and pulled inward: "I determined not to speak with anyone and just focus on my academics. I wanted to work, not blend in, but to remain completely invisible."
As Stephen relates, however, "A single encounter changed the course of high school for me." He might have added, and his life. A girl approached him and started a conversation. They became friends. Stephen used this as an opportunity to learn social skills. He began mimicking the way she spoke and adapted his personality to hers. As he became acquainted with her friends, he also took on many of their mannerisms as well. Stephen succeeded to the point where people tell him he does not seem autistic. In response he has to "explain to people what being autistic really means. I have to show them I'm not what they expect me to be, and that's okay." The opening sentence of Stephen B.'s essay is "I grew up an outsider." The closing one is,"I am no longer an outsider."
In contrast to Stephen B who was diagnosed at seven, Onaiwu did not begin seriously seeking her own diagnosis until her children were diagnosed with autism. This was despite the fact that, as she says, "I was a living contradiction: I was reading on a college level in early elementary school but I couldn't tie my shoes." Her only images of autism were the negative ones that she saw on the media. Then when her own children were diagnosed she did everything she could to become an advocate. So unlike Stephen, "when I came out as autistic, I did it big." It has led her to actively advocate for and try to educate others. Both Stephen B's and Onaiwu's essays are well-considered, enjoyable reads. Stephen, one of the anthology's most lucid writers, has a second essay "Vignettes" that expands upon his experiences and give readers a longer look at his work.
For readers who fall under Onaiku's conception of the book's audience (as I have interpreted i)t, one of the book's most fascinating pieces is Jessa Sturgeon's somewhat misleadingly title "Sometimes I Wonder if I'm being Masochistic." "Masochistic" is a reference to the fact that Sturgeon is person with autism who is a philosophy student. After reading Sturgeon's essay, anyone familiar with John Searle's well known analogy of the Chinese box in discussions of theory of mind, will understand the irony.
Sturgess' piece is so succinctly written that it is tempting to just insert her entire essay, but I will forebear. She begins by stating her bottom line: "That physical sense of understanding is something I have to have before something can really and truly be useful for anything other than word games."
She realizes from observation that the verbal interplay between others seems to be an important, highly-valued skill to them but to her it seems to be nothing but a game. "There are always so many word, but most of them I don't even understand when I do understand them…I learned to talk by cutting and pasting echolalia together." What has evolved as a means of verbal communication is worth citing verbatim:
I am usually fairly adept at selecting enough different sound bites and remixing them to say things that don't seem entirely tangential or illogical to their intended audience. My understanding is often more syntactic than semantic though. Compared to the "non-verbal vocalizations," "irrelevant tangents," and "meaningless repetition" of thoughts and feelings and private communications, those complex word collages feel flat and distant, sometimes beyond my own understanding.
Sturgis concludes by saying that when writing, "I feel more like an editor than a writer." One wonders what Noam Chomsky would have to say about this.
One of my tenets as a reviewer is that I never criticize books for what they were not trying to achieve in the first place. As a glance at any of the pieces in the anthology that editor Lydia X. Z. Brown has authored makes clear, All the Weight of Our Dreams is primarily a political assertion, not a literary anthology. To reiterate Onaiku's mantra, "We exist…we matter." As a result, I haven't commented on the poetry included in the volume. Much like the chants and street poetry of the early disability rights movement, its primary purpose is to provide the drum beat and effect solidarity. No doubt it accomplishes that purpose. It will be interesting in the future to see if these editors, or perhaps others, can channel the work of these poets into something that approaches a nuanced poetry of autism. As DJ Savarese has already proved in his recent collection of ekphrastic poetry A Doorknob for An Eye, it can be done.
In the meantime. All the Weight of Our Dreams, is a huge achievement. In her foreword to the book, Ashkenazy says, "I strive to define my unique experiences and have my voice heard." By gathering together the multiple voices of autistic people of color, this book has provided that opportunity for an entire community. It has also brought to light the names and work of many writers who might not otherwise have received recognition that could jump-start them into other possible achievements. One can only hope that others reading the book will recognize the waiting talent and help to extend those opportunities.
*Many of the contributors to the anthology have chosen to use non de plumes or initials.
Title: All the Weight of Our Dreams