“Nothing so concentrates experience and clarifies the central conditions of living as serious illness,” wrote Harvard psychiatrist Arthur Kleinman, and nowhere is that idea more evident than in a new memoir entitled, The Bright Hour: A Memoir of Living and Dying (Simon & Schuster, 2017) by Nina Riggs.Read More
An Iraq veteran fighting the “quiet conflict” of PTSD, a woman with memory loss who hides her disability as well as her misery, a man whose traumatic brain injury helps him make sense ofhis brother’s disability. These are a few of the many voices we learn from in Barriers and Belongings.
At first glance, the book is a disabilities studies textbook with an introduction and chapter openings that provide background on social and cultural approaches to disability, as well as useful definitions. But Barriers and Belongings is much more than a textbook: it’s an eye-opening collection of lives, told with honesty and moving candor. The narratives, which are organized into sections around themes such as communication, family and relationships, are engaging and short, allowing room for many different points of view. Most are written from the perspective of early adulthood, reflecting back on growing up, which gives them an appealing coming-of-age quality. The writers lead us up to the moment their conception of their disability changes in some way. The ways are as varied as the disabilities themselves, which range from acquired conditions such as PTSD and chronic pain, to congenital conditions such as cerebral palsy and Down Syndrome, to mental health and cognitive conditions. Because of these many viewpoints, one writer identifies the need for “people with diverse disabilities [to] recognize our common struggle” in order for the disability movement to reach its “full potential to change society.”
For the book is as much about the larger society as it is about the individual stories. Most of the writers see disability not as a problem to be solved but as an integral part of themselves, and want to reframe disability from a nonsocial and nonmedical perspective. As one writer puts it, “I wonder how the world would be if everyone realized that normal didn’t exist, and that trying to achieve normalcy was futile. What if disability didn’t always need a cure? What if everyone equated disability with difference, not deficiency?” Or as another writes: “Sometimes, abnormal is normal.”
PRISCILLA MAINARDI, a registered nurse, attended the University of Pennsylvania and earned her MFA degree in creative writing from Rutgers University. Her work appears in numerous journals, most recently The Examined Life Journal and Prick of the Spindle. She teaches English Composition at Rutgers in Newark, New Jersey. Her short story “Pretending Not to Know” appeared in the Spring 2014 Intima.
For some two years, Erin Wood spent her time examining scars. As careful and probing as a surgeon, the writer and editor of Scars: An Anthology examined a wealth of poems, photographs, and prose about the subject and handled each person's revealing narrative with the emerging understanding that "there is a great deal about our scars that extends far beyond the individual body and the self."
Wood, whose essay "We Scar, We Heal, We Rise" was a Notable Essay in The Best American Essays 2013 (it appears in this volume) reflects on the ways scars may "belong to different versions of ourselves: our past selves...or new selves, selves in transition, or even selves we wish to regard more fully."
Stories that address these issues make the collection a rich reading experience that at times can be intense and painful, but also enlightening and entertaining. There is a lot of humor alongside the humanity that's revealed, as well as insight into the clinical encounter, most notably in Sayantani DasGupta's "'Tell Me About Your Scar': Narrative Medicine and The Scars of Intelligibility." One of the most moving and insightful pieces in the collection is "The Women's Table," an interview with Andrea Zekis, who speaks frankly about her "gender confirmation surgery" and the scars, emotional and physical, created but also taken away during her transition. A photo essay by New York photographer David Jay, who began The SCAR Project, is a stunning look at those who show their scars frankly and with pride. And while many of the pieces in this book are personal essays and memoirs, it is the poetry— like Samantha Plakun's "Written In Stitches" and Philip Martin's "The Pry Bar"—that draws the reader in close to examine the beauty and personal history revealed in the body's terrain.—Donna Bulseco
On December 10,2015, Columbia University's Seminar on Narrative, Health and Social Justice presented "Scars as Art, Text and Experience" at the Faculty House, featuring Editor Erin Wood and contributors Kelli Dunham, Lorrie Fredette, Samantha Plakun, and Heidi Andrea Restrepo Rhodes. Marsha Hurst, who is a lecturer in Narrative Medicine at Columbia University and co-chairs the University Seminar on "Narrative, Health, and Social Justice" introduced the panel. Hurst is co-editor with Sayantani DasGupta of Stories of Illness and Healing: Women Write Their Bodies. Listen to the event in its entirety below: