Tag Archives: Amy R.

Type L For Live

At least once a year, I take down a certain book and read it through, though I know it well enough that I can start from any point. And then, if I can, I give it away. The gap in my bookshelf makes me happy; it feels right to pass along this book. But it comes with a sense of regret, too, and not a little awe. I don’t think anyone will write anything like William Horwood‘s Skallagrigg again.

Published in 1987, it seems both timeless and brave as a product of its time; Horwood’s winding prose is gentle, but spares you nothing. It begins in 1927 with Arthur, a boy with cerebral palsy abandoned in a squalid institution, where he loses even his name. He begins to tell his fellow patients of the Skallagrigg, a mysterious figure who he prays will take him home–over a fence and into a field of poppies, where someday he will run. Skallagrigg becomes a legend among the patients, a protector amid neglect and brutality. For years, disabled people pass down Skallagrigg stories all over England–with eyes, feet, symbols, speech–until Arthur becomes legendary too.

In the 1970s onward, the stories reach Esther Marquand. Privileged, clever, and contrary, she too is tangled in her body. She’s not always likable, but she is appealing. With more to say than she’s able, Esther reveals the workings of her mind in subtle ways. Every twist of a limb matters; every “Nah” or “Yeh” has an inflection. Emerging technology reveals her quick reasoning as well as foreshadows the freedom computers would bring to many disabled people. When Esther scans the letter grid of a Possum typewriter or chords Speedwords on a Microwriter-esque keyboard, you’re in her head where time passes in letters per minute, then words; you know exactly how much effort it takes her to communicate, and how elegant numbers and logic can be. Esther begins to believe the Skallagrigg stories are real, programming them into a labyrinthine interactive fiction game as she searches for the only person who knows who or what the Skallagrigg is. Along the way, she leaves an “Easter egg” especially for our narrator, who’s telling the story against Esther’s father’s wishes in 2019.

None of this does it justice; I don’t think I can. It’s a hell of a quest novel, where the mazes are library stacks and hospital corridors, and the battles are spiritual and personal as well as physical. Today it’s also a little bit of nostalgia for people who remember things like BASIC, Pong, and such vexing lines as “You are in a twisty little maze of passages, all different.” But if that were all, it wouldn’t have become its own Skallagrigg story. Out of print (but available through WorldCat), it circulates now through word of mouth and gifts of secondhand copies. Often the recipient is another disabled person, but always it’s only someone who would understand.

Skallagrigg is an epic act of empathy; I haven’t read anything so broad and painstakingly detailed before or since. This is worldbuilding–but what Horwood recreates is the everyday history, language, love stories and struggles of people like his own daughter as well as himself. His daughter has CP; the novel was partly his coming to terms with their relationship. But Esther’s is not the only quest, nor the only disability. Here, disability is also loneliness and estrangement and the inability to help the people we love. There is an ache throughout this book, and we follow the thoughts of each character as they slowly make their way to the people who might ease it.

Horwood returns often to the characters’ relationships, sometimes mentioning each with their complement in a refrain, as if they’re dancing. Relationships are everything in this novel, their mutual exchange and dialogue essential for the characters’ survival. In their bonds I find an apt line of poetry attributed to Roy Croft: “I love you not only for what you are, but for what I am when I am with you.”

Disabled people may be rooted in their bodies, but the spirit of disability is also fluid–shaped by whom you’re with and where you are. Some people drag down hard at your bones and render you helpless, strangling your voice worse than disability could by shouting over your words until hopelessness and tension make you mute. With others, your limbs ease and you can breathe and participate and laugh. Expansive and forgiving, granting the whole human spectrum of emotion to mutually imperfect minds, Skallagrigg is a testament to the people who help you over barriers when you’re bruised and scraped against them–who give you glimpses of poppies and the sky between the trees.

It’s an intense and sometimes dramatic read, but it is also fiercely beautiful. The effect of reading the characters’ journeys in such exhaustive detail is greater than the sum of its parts, generating an amazement that’s distinct from the book itself–a mix of peace and joy and sadness and rightness so deep it’s almost a presence. The Skallagrigg, perhaps.

photo of bright orange poppies, taken by Rebecca O'Connell

Bright orange poppies, taken by Rebecca O’Connell. All rights reserved.

Related reading:

Under the Eye of the Clock, by Christopher Nolan

Ready Player One, by Ernest Cline

The Lives They Left Behind: Suitcases From A State Hospital Attic, by Darby Penney, et. al.

Out of My Mind, by Sharon Draper

Petey, by Ben Mikaelsen

William Horwood’s site

–Amy R.




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Beautiful Scars

We close out the week with a guest appearance from Amy R., writer/editor for the Carnegie Library’s Story Pockets blog.

People with power can afford

To tell their story

or not.

People without power

risk everything to tell their story

and must.

from “Telling,” Laura Hershey

A book of poetry saved my life last summer. It took over a year to write about, because I read it the way I always read poetry: at random, skipping back and forth. More than that, I had to read it gingerly. I know “mirror books” and “window books”–one reflects your life, and the other looks out on a different one. But I can only describe Beauty is a Verb: The New Poetry of Disability as some kind of malleable verbal sculpture. The poems both gave shapes to disabilities I’d never seen before and felt as familiar as my own skin. The latter was no small thing–when a librarian told me, “By the way, we have this book…,” my body might as well not have been mine.

In “Beauty and Variations,” Kenny Fries wrestles with both his nondisabled lover and a question: “Can only one of us be beautiful?  Is this your / Plan?,” he asks as his lover traces his deformities. Beauty here is synonymous with power. There is power between disabled and nondisabled people, with the latter often bestowing it on the former. People with disabilities are often expected to be passive and grateful recipients, objects that are “done to.” Their bodies become nouns immobilized by other people’s adjectives. Their own words do not figure.

“I am all motion and / this motion is neither weak nor hideous / this motion is simply my own,” states Jennifer Bartlett. But in Sheila Black’s “What You Mourn,” we see that the calm, self-evident truth of living in your body can be shaken. “[T]hat body they tried so hard to fix, straighten was simply mine, / and I loved it as you love your own country.” “Simple” is anything but, charged with fear and frustration as well as affirmation: I live in this body; it’s just me. Why is that so hard for you to understand? From here comes Black’s “native anger” at having her legs straightened so she can “walk straight on [her] wedding day,” her wondering who she’d have been if she were crooked; the nostalgic summer imagery of running in her crooked body proves that disabled people don’t always mourn their bodies or need saving the way nondisabled people sometimes assume they do.

One of the hardest things for many nondisabled people to accept is that disabled people intimately inhabit their own bodies. They–I want very badly to say “we”–learn, sometimes instinctively, how to make the laws of physics work for their bodies as best they can. They interact and react constantly to environments and people that may pose physical or spiritual difficulty. They are immersed.

There’s a reason Beauty is “of” and not “about” disability: disability is also the verb. It’s active rather than passive, influencing how the poets do and think and be. This book is immersion, from the cover photo onward: artist Sue Austin in a bright red wheelchair, hair streaming behind her, breathing underwater.

All rights reserved to Susan Austin.

Retrieved from Susan Austin’s webpage. All rights reserved to the artist.

Poetry is a satisfying form for disability to take sometimes. Narrators in poems are called speakers; here are disabled people speaking for and as themselves, which is still a rare thing among portrayals of disability sanitized to the point of meaninglessness and disabled people who never object or say ouch. It feels like a magical and faintly dangerous act to say the words that transform their experiences into what they actually feel like. I never had either the chance or the sleight-of-tongue, and was full of admiration. I caught myself half afraid, wondering what would happen if the poets were interrupted and spoken over–what they would turn into if the words that went down weren’t theirs.

But that does not happen. When Petra Kuppers describes her wheelchair as an elemental plant with historical and figurative roots and “evergreen forces,” I could smell rain and taste metal; I saw her fingers as vines twining the wheels.

Poetry is also a form of protection, Emily Dickinson‘s “slanted truth” that “must dazzle gradually / or every man be blind.” It protects not only the reader, but the speaker. Nondisabled people are not often equipped to deal with the possibility that, according to the social model, they might contribute to the difficulties disabled people face. If they were to take the role of a blind or otherwise disabled person too suddenly, they would realize their own mistakes and become defensive, attempting to discredit the disabled viewpoint. In the time it takes to process a figure of speech, the impact is, if not softened, slowed.

Metaphors and linguistic devices are not, however, euphemisms or misdirection. They are, sometimes, the most honest way to convey the spirit of disability when the literal experience is disbelieved or dismissed. When Laurie Clements Lambeth recounts the MS-related tremors that woke her and her partner, there’s a rhyme for “shaking” every other line. It resonates; it demands and insists that you acknowledge it.

I don’t seek out disability studies books because I want to. I do it because, after the 10th or 20th time someone tells me what to feel or that attitudinal barriers don’t exist except maybe “out in the wider world” (never quite meeting eyes), my bones ache to throbbing–I swear grief goes straight to my knees–and I have a terrible sense that people like me aren’t worth listening to or empathizing with. Disability studies gives me back some reality, as hard as it might be. Beauty is a Verb is considered disability studies as well as poetry, but it is more than either.

I don’t exaggerate when I say that it gave me back the spirit of my body. My hands jerked when I realized I had said the same thing as Bartlett and Black, only sobbing and feeling as if I’d been punched in the stomach. “But it was mine!” My knowledge of my body, my adulthood and my personal space had been disregarded utterly, so that I couldn’t even move. What fear or hurt I had was inconsequential; I was “asking for it” by having asked for help with something different; I “didn’t understand what I look like.” I became terrified to accept help from almost anyone, wondering what license it granted them over my body. My stick, which I’d come to regard as an instrument and extension of my body, felt ugly and unwieldy. If my feelings meant nothing, then why feel anything? So I didn’t–for some time, I couldn’t. Beauty was a gift of perfect timing, its recommendation a form of advocacy.

This book is nerved; reading it is a sensitive, sensual and sensory act. I’d never seen so many disabled people feeling things at once: even pain, even, deliciously, anger. I felt the words take shape in my own skin like a ghostly set of senses. Only then did I settle back into my body and remember “the melody of crutch” (Petra Kuppers, “Crip Music“).

No one will ever be required to understand disabled people in quite the same way disabled people need to understand or defer to nondisabled viewpoints just to navigate the world. But if you want an education that sings and rages and puzzles and soothes, Beauty is well worth the shock of the plunge. And you might remember something you forgot.

I wish you’d learn better

before we all totter

into our coffins where

there’s no straight way

to lie crooked.

from “Dramatic Monologue in the Speaker’s Own Voice, Vassar Miller

Related reading:

The Disability Studies Reader, Lennard J. Davis, ed.

Blind Rage: Letters to Helen Keller, Georgiana Kleege

–Amy R.

A day of advocacy, a day of giving. Click here to learn how you can support the Carnegie Library of Pittsburgh on October 3rd.



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