Book Review: About Us (Peter Catapano and Rosemarie Garland-Thomson)

Reviewed by Michael Northen

In March of 2016, I was contacted by poet and friend Anne Kaier who told me that, as a result of an essay that she had submitted to the New York Times, she had been talking to Peter Catapano about the possibility of putting together a series of literary essay on disability. Because of my involvement with Wordgathering and Beauty is a Verb, Anne asked what writers I would recommend for the series. We brain-stormed and began trying to recruit writers for the series. I even submitted an essay of my own based upon my work with disability-related writing which Peter – who had decided that he wanted the series to concentrate on the lived experience of disability – rightly rejected.

In August of 2016, the series finally appeared in the Times. Many of the first essays that appeared were by friends or acquaintances who reported overwhelming responses. The appearance of these essays generated a ripple effect that lasted for over two years and reached thousands of people with every issue. With its undeniable success, it is not surprising, that a number of these essays now find themselves collected into – About Us, edited by Catapano and Rosemary Garland-Thomson, one of disability studies most widely recognized scholars and writers.

The book takes its title from the well-traveled disability rights slogan, "Nothing about us without us." It includes sixty-one essays representing the writing of over fifty authors, with prefaces and introductions by Catapano and Garland-Thomson, and a foreword by Andrew Solomon, one of the book's contributors. While the essays in the NY Times series were published, for the most part, in no particular order, the editors have arranged them according to eight topics in the book, beginning with "Justice", which provides some historical context for the remainder of the essays and ending in "Joy," a section that goes along way towards countering the stereotypes of a disabled life as one not worth living. A few of the writers, like Oliver Sacks are well-known and others, like Kenny Fries, Riva Lehrer and Alice Shepherd are familiar to those in the disabilities community, but one of the gratifying things about this collections is that it also features voices that the majority of readers will probably be hearing for the first time. Aside from disability, the one thing that all of the essays possess is the literary quality that Catapano was originally seeking.

Catapano's "Preface" and Garland-Thomson's "Introduction" make an interesting pairing and both are well-worth reading in themselves. Catapano, who is not disabled, admits that his original motivation for the series was two-fold, both of which were journalistic: (1) to try to provide some of the same kind of exposure to disabled writers that groups involved with feminism, Black Lives Matter and LGBT activities seemed to be getting and (2) to create something of literary value. After reading through so many of the essays that he received, however, he came to see disability not as a group, but as a spectrum on most of the which everyone, including himself, fit somewhere. His introduction is valuable because, like Catapano, most of the readers of About Us, will probably see themselves as non-disabled, and it bodes well that reading what these writers offer can do the work of contributing to change.

In contrast, Rosemarie Garland-Thomson is intimately familiar with disability, as a person and as a scholar. She may, in fact, be disability studies' single best representative in her ability to understand the most complex issues that scholarship confronts and translate it into language that is accessible to any reader who is likely to be reading the New York Times. As Garland-Thomson points out, with having over 6 million readers, the Times series played an important role in allowing the "Us" part of About Us to reframe the conversation. In her introduction essay to the volume, takes the opportunity to point outsome of the terms of the reframing that non-disabled and even many disabled people may not be aware of. "Our don't ask for sympathy, plead for inclusion or extol tolerance," she warns. And to those who may be taken aback by this statement she replies, "For all of us, the assumption that ours is a deficit mode of existence is an insult." Thus, while Garland-Thomson and the stories in the first section of the book draw a clear line from the early eugenics programs of Nazi genocide in Germany and involuntary sterilization in the United States to the applications of contemporary genetics research, the stories overall invite readers in to see not just the difficulties, but the overall successes, busyness and joys of disabled lives.

Because there is no way that I can (or should try to distill) the incredible work of these writers into a short space, I am simply going to cherry pick and, in doing so, hopefully just whet the appetite for further exploration of this book.

Several of the stories told in the volume elaborate on Garland-Thomson's concerns about genetics and its attempt to erase disability. The most obvious of these is Kenny Fries, "The Nazi's First Victim Were Disabled," an uncomfortable reminder in today's political climate, but Sheila Black's essay "Passing My Disability on to My Children" centers that concern in the context of the ordinary desire to have children.

Black begins her story:

When I was pregnant with my first child, my ob-gyn referred me to a genetic counselor "just in case."

I have a condition called X-linked hypophosphatemia, or XLH, which results in a form of dwarfism. I was a spontaneous case; there had been no history of my family before me. No road map.

The counselor did not seem too worried. "Don't sweat it," said. "Frankly this is so rare, you'd have to marry a guy from the rickets clinic to pass it on." I have birth to my first child – my daughter Annabelle – seven months later. She did not have XLH.

As it turned out, however, Black's second child, a son, did inherit XLH, as did her next daughter. The essay muses on Black's feelings about passing this on to her children, knowing some of things that she experienced as a child, but also knowing how full-filling her own life has been. Asked which of her children has had the happiest life, she wouldn't be able answer. She also worries about the whole concept of designer children

I can't help suspecting that because of advances in genetic mapping, genetic testing, the sheer range of prenatal choices, chances are that in a generation or two, there will be no one in the world who has XLH, no one who looks like me or my children – at least not in the so-called developed world – and I don't know how I feel about that.

It's a humane and powerful piece.

In a very different tone, Ona Gritz, describes her own epiphany as a disabled writer in "Finding Myself on the Page." Despite having cerebral palsy, Gritz was able – as her parents and society urged – to "pass" in most situations. When she first began to write, even as an adult, her work contained no reference to her disability. After marriage and the birth of her child, however, she found that she had to confront the areas in which her disability revealed itself, and, as a writer, these surfaced in her writing as well. When a literary agent and friend suggested her writing a memoir on mothering with a disability, Gritz asks, "Would I have to be disabled on every page?"

I love Gritz's essay, not because most of whatever she writes is a delight to read, but because as editor, I remember so many times when writers have asked themselves the same question. Gritz puts her own view of herself as a writer on the line when she says, "The page is where I finally came to understand my own body and its evolving narrative, where I continue to learn when my disability informs a particular dynamic and when it's beside the point."

In the "Foreword" to About Us, Andrew Solomon, quoting a matador, writes, "'The bull looks very different when you are inside the ring.' Disability looks very different for disabled people than it does for non-disabled people." Solomon would know. As both a clinical psychologist and a psychiatric patient, he has seen both sides. In "Mental Health is Not a Horror show," the essay that he contributed to theTimes series, he calls attention to the casual language that many of us, even those with other disabilities, use daily:

I have a pretty good sense of humor about myself. We all use the language of mental illness cavalierly We say that our parents or our kids are driving us crazy; we complain we will soon go made if the traffic doesn't clear; we accuse Donald Trump of having a personality disorder (which, whether or not accurate, is still intended as disparagement). But I have also spent a lifetime trying to laugh when a friend has driven me past a psychiatric hospital and commented on the loons inside…"

Not all disability is visible and, as Solomon points out, if sanity and mental illness lie on a spectrum, then most of us cross over from time to time. His essay should find many readers in agreement. I know that as the parent of daughter who blogs about mental health, I am.

I am thrilled to see Daniel Simpson piece "Space Travel: A Vision" appear in the book's final section, "Joy." To me, all of Simpson's work, and, for that matter, his life itself, is emblematic of the spirit that this final section is trying to convey. If writer after writer in this collection has recorded how with the birth of a disabled child, doctors become prognosticators of woe and relatives become solicitous, the antidote to those jeremiahs is to read Simpsons writing and see how wonderfully ordinary his experience as a blind person have made him and how quickly you will identify with him. In this particular essay Simpson describes how he is spotted with his dog on a corner in Philadelphia by a mother whose son, Joe, was losing his sight. With his customary patience, Simpson endured the woman's questions; she was happy to learn he had graduated from college. He writes, "I am an ambassador from a distant land. For Joe, I might as well have come from the moon, which I can't see. I might as well be John Glenn."

These are just four of the essay in About Us that I might have selected, almost at random, from the sixty-one in the book. As the editor of Wordgathering, what is so exciting about this collection is that with the backing of the New York Times, a publisher like W. W. Norton, and a national figure, such as Rosemarie Garland-Thomson the voices of these writers, many of which small journals like mine and publishers like Handtype Press dedicated to the work of disabled writers have been hearing for years now, have a genuine shot at finding themselves with the larger public audience that they deserve. I couldn't be happier.

Title: About Us
Author: Peter Catapano and Rosemarie Garland-Thomson, eds.
Publisher: W. W. Norton and Company
Publication Date: 2019

Michael Northen is the editor of Wordgathering and an editor with Jennifer Bartlett and Sheila Black of the anthology Beauty is a Verb: the New Poetry of Disability. He is also an editor of the recent anthology of disabiity short fiction, The Right Way to Be Crippled and Naked (Cinco Puntos Press).