Tag Archives: disability

AIDS Readings

December 1 is World AIDS Day. HIV/AIDS has wrought enormous suffering worldwide and caused more than 35 million deaths. The nine books that follow are testimony to that devastation.

The Pox Lover: An Activist’s Decade in New York and Paris

Anne-christine d’Adesky

A personal history of the turbulent 1990s in New York City and Paris by a pioneering American AIDS journalist, lesbian activist, and daughter of French-Haitian elites. Anne-christine d’Adesky remembers “the poxed generation” of AIDS—their lives, their battles, and their determination to find love and make art in the heartbreaking years before lifesaving protease drugs arrived.

“Never far from the mad joy of writing, loving, and being alive, even as it investigates our horribly mundane capacity for horror, this book is a masterpiece.” —Michelle Tea, author of Black Wave

In the Province of the Gods

Kenny Fries

Kenny Fries embarks on a journey of profound self-discovery as a disabled foreigner in Japan, a society historically hostile to difference. When he is diagnosed as HIV positive, all his assumptions about Japan, the body, and mortality are shaken, and he must find a way to reenter life on new terms.

“Fries writes out of the pure hot emergency of a mortal being trying to keep himself alive. So much is at stake here—health, affection, culture, trauma, language—but its greatest surprise is what thrives in the midst of suffering. A beautiful book.”—Paul Lisicky, author of The Narrow Door

AIDS in French Culture: Social Ills, Literary Cures

David Caron

The deluge of metaphors triggered in 1981 in France by the first public reports of what would turn out to be the AIDS epidemic spread with far greater speed and efficiency than the virus itself.

“Literary and cultural analysis come together here as Caron casts brilliant light on the disastrously inadequate public response to the AIDS pandemic in France. . . . He shows how literature supplied the communitarian voice that would otherwise have been lacking.”—Ross Chambers, author of Facing It: AIDS Diaries and the Death of the Author

How to Make Dances in an Epidemic: Tracking Choreography in the Age of AIDS

David Gere

“Anyone interested in dance or in gay culture or in art and politics should, as I did, find this a fascinating book, impossible to put down.”—Sally Banes, editor of Reinventing Dance in the 1960s

Loss within Loss: Artists in the Age of AIDS

Edited by Edmund White

In Cooperation with the Estate Project for Artists with AIDS

“A poignant reminder of the devastating impact of the AIDS epidemic on the arts.”—Library Journal
“A searing, and often bitingly funny collection of personal essays by almost two dozen writers—John Berendt, Brad Gooch, Allan Gurganus, and Sarah Schulman among them—Loss within Loss remembers over twenty creative artists lost to AIDS.”— The Advocate

Tentative Transgressions: Homosexuality, AIDS, and the Theater in Brazil

Severino J. Albuquerque

Co-winner of the 2004 Roberto Reis BRASA Book Award

“Albuquerque’s work . . . provides an archaeology of theatrical representations of homosexuality in Brazil, an alternative history of Brazilian theater from the margins, a critical analysis of canonical and non-canonical plays infused with the insights of feminist and queer theory, as well as a history of the representation of AIDS in Brazilian culture.”—Fernando Arenas, University of Minnesota

Celluloid Activist: The Life and Times of Vito Russo

Michael Schiavi

The biography of gay-rights giant Vito Russo, the man who wrote The Celluloid Closet: Homosexuality in the Movies, commonly regarded as the foundational text of gay and lesbian film studies. A founding member of the Gay and Lesbian Alliance Against Defamation (GLAAD) and cofounder of the AIDS Coalition to Unleash Power (ACT UP), Russo lived at the center of the most important gay cultural turning points in the 1960s, 1970s, and 1980s.

Recovering Bodies: Illness, Disability, and Life Writing

G. Thomas Couser Foreword by Nancy Mairs

A provocative look at writing by and about people with illness or disability—in particular HIV/AIDS, breast cancer, deafness, and paralysis—who challenge the stigmas attached to their conditions by telling their lives in their own ways and on their own terms.

A Letter to Harvey Milk: Short Stories

Lesléa Newman

“Although pain plays a part in this volume, many of the tales celebrate with warmth and good humor the courageous maintenance of the Jewish tradition in radical relationships. . . . Contemporary characters confront both timely issues, like AIDS, and eternal ones, such as a lovers’ quarrel or a mother-daughter misunderstanding.”—Publishers Weekly

Tanizaki’s Yaichi: A Japanese disabled character as hero, outcast, and metaphor

Today, the University of Wisconsin Press is pleased to publish Kenny Fries’s account of a journey of profound self-discovery as a disabled foreigner in Japan, IN THE PROVINCE OF THE GODS. Here he comments on some of the “outtakes” from early drafts of the book.

Fifteen years ago, I first traveled to Japan to look at its historical and cultural relationship to otherness, to difference. More specifically, I wanted to learn about how the Japanese viewed and represented disability. During my first stay in Japan, much of this eluded me for reasons I write about in In the Province of Gods,

Three years later on my second trip, I found what I was looking for. But, as my book’s focus shifted, this research became more background than foreground. Though some of what I found in Japan about representation of disability remains in the book, much of it is now only in what I call the “outtakes.”

I did include in my book observations about the disability representation in Japanese writer Tanizaki Junichiro’s novel Portrait of Shunkin. Most notably, I write about the way that Tanizaki’s story of Shunkin, a blind samisen singer, illuminates my meeting two of the surviving Hiroshima Maidens, the twenty-five hibakusha (atomic bomb survivors) who traveled from Japan to the United States for medical treatment in 1955.

But another of Tanizaki’s blind characters is not represented in my own book. In A Blind Man’s Tale, Tanizaki tells the familiar story of the siege of Osaka Castle and historical figures Nobunaga and his successor Hideyoshi. He recounts this history through the voice of Yaichi, who like Shunkin is a blind samisen singer. Yaichi is also a masseur. (Samisen singer and masseur are traditional occupations for the blind in Japan.) Yaichi is in the service of Lady Oichi, sister of Nobunaga. She is married to Lord Nagamasa, an ally of Nobunaga until they have a falling out.

Many familiar tropes of blindness attend the tale of Yaichi, especially that of a blind man’s unrequited love. Because of his blindness, he goes unnoticed by the men but is taken into the confidence of a beautiful woman above his station. There is also the unfortunate metaphor of “blind devotion.” But what is singular about this tale comes at the story’s climactic moment.

During a siege of the castle, Yaichi entertains Lady Oichi along with a visitor, the warrior priest Choroken. As a master samisen player himself, Yaichi notices that Choroken’s playing includes embellishments of a tune with “queer phrases, twice-repeated.” Yaichi informs us,

Now, there is a secret code that all of us blind samisen players know very well. Since each string of the samisen has sixteen stops, the three strings together have forty-eight: when you teach a beginner how to play the instrument you help him memorize these stops by marking them with the forty-eight characters of the alphabet. Everyone who studies the samisen learns this system; but we blind musicians, since we can’t see the characters, have to learn it by heart, we associate each note with its proper letter quite automatically, as soon as we hear it. So when blind musicians want to communicate secretly they can do it by playing on the samisen, using this system as a code.

Tanizaki Junichiro

Yaichi realizes Choroken’s “queer phrases” are communicating that the servant needs to save his mistress, and he perceives the plan Choroken is secretly transmitting. Yaichi’s blindness is a crucial asset in this covert exchange.

Tellingly, in the popular Kabuki theater version of the story, this original element is left out, leaving the story to emphasize the comparison between the “blind” love of Yaichi with that of those who court the widowed Lady Oichi and her beautiful daughter “whose voice sounded just the same” as her mother. Lady Oichi affections are won over by Hideyoshi, even though he killed her family. In the end of the Kabuki version, Yaichi is left on stage, remembering his Lady, who appears in the distance playing her koto. She disappears, leaving Yaichi decidedly alone and crying.

In Tanizaki’s story we are shown how disability can, in certain contexts, be advantageous, as well as how the nondisabled use disability for their own purposes. But, as in much of Japanese culture, the story simultaneously conveys opposing ideas. In A Blind Man’s Tale, we are given the blind man as hero, outcast, and metaphor.

Kenny Fries is the author of Body, Remember: A Memoir and The History of My Shoes and the Evolution of Darwin’s Theory, and editor of Staring Back: The Disability Experience from the Inside Out. He teaches in the MFA in Creative Writing Program at Goddard College and is the recipient of a prestigious Creative Capital grant. He lives in Berlin.

Author’s website: https://www.kennyfries.com/

Goodnight, Beloved Comrade

This week, the University of Wisconsin Press publishes Good Night, Beloved Comrade: The Letters of Denton Welch to Eric Oliver, edited by Daniel J. Murtaugh.

Denton Welch

Denton Welch (1915–48) died at the age of thirty-three after a brief but brilliant career as a writer and painter. He published four novels published between 1943 and 1950: Maiden Voyage, In Youth Is Pleasure, Brave and Cruel, and A Voice through Cloud, as well as a large body of short fiction and poetry.The revealing, poignant, impressionistic voice that buoys his novels was much praised by critics and literati in England and has since inspired creative artists from William S. Burroughs to John Waters. His achievements were all the more remarkable because he suffered from debilitating spinal and pelvic injuries incurred in a bicycle accident at age eighteen.

Though German bombs were ravaging Britain, Welch wrote in his published work about the idyllic landscapes and local people he observed in Kent. There, in 1943, he met and fell in love with Eric Oliver, a handsome, intelligent, but rather insecure “landboy”—an agricultural worker with the wartime Land Army. Oliver would become a companion, comrade, lover, and caretaker during the last six years of Welch’s life. All fifty-one letters that Welch wrote to Oliver are collected and annotated here for the first time.

Daniel Murtaugh, editor of Goodnight, Beloved Comrade, shares in the following post how he’s experienced a companionship that mirrors that of Welch and Oliver.

I made my first trip to Austin, Texas, during the summer of 1996 to locate and transcribe the correspondence of Denton Welch, partially funded by a small research stipend and a University of Kansas Endowment loan. The Harry Ransom Research Center at the University of Te

The Harry Ransom Center

xas held Welch’s original holographic letters purchased in the 1960s from Eric Oliver, Welch’s companion. My book originated from the work I did during this visit.

As it happened, Ned, one of my closest friends from Lawrence, Kansas, had moved to Austin a couple of years prior and was working for a rare book and manuscript restoration business. Though I knew I would be spending most of my daytime hours in research, I made plans to get together with my friend during the evenings.

Martha Campbell in front of her bed and breakfast

Ned picked me up at the Austin airport and took me to the bed and breakfast run by Martha Campbell in the Hyde Park area of Austin. Martha had lost her husband and had converted her home into a lovely and relaxing oasis for visiting scholars at the University of Texas. My digs were a series of light-filled rooms where I immediately felt at home.

Martha is a well-read and feisty Texas woman, much like her idols Governor Ann Richards and Molly Ivins, and we had many lively political and literary discussions during my time in her home.

Some of my most memorable moments at Ms. Campbell’s were those sitting on her porc gecko h, after dark, reading or mentally rehearsing my findings from the Denton Welch Collection at the Ransom Center. I was quite used to the deafening droning of cicadas as evening fell, but not to geckos. I was amazed and delighted to see several of these tiny lizards clinging adhesively to the porch walls, then darting after any mosquitos or other insects coming into the danger zone. I half expected one of these creatures to leap onto my shoulders in hot pursuit of its nocturnal quarry, but it never happened.

Congress Street bats

While I am still within a darting tongue’s distance of the subject of insect control, I might mention that one evening—just at dusk—Ned and I went to the Congress Street bridge in downtown Austin, under which thousands of bats make their homes. As we sat on the bank of the Colorado River, we heard a deafening squeaking and whirring, preceding waves of bats winging and pirouetting their way down the river channel in search of mosquitos. It should come as no surprise that this natural phenomenon has become one of the “must-sees” for visitors to the city.

Barton Springs

Ned and I spent a lot of time together, bicycling to Barton Springs (for relief from the intense south Texas heat), along the numerous bike paths on the banks of the Colorado, and finally climbing the cliffs above Lake Travis for an exhilarating view of the Texas hill country. On my last Saturday in Austin, we took a hike among some rocky outcroppings near the river. When I stopped for a rest, I naively sat down cross-legged on the ground; it didn’t take long for me to realize that fire ants (which one is unlikely to encounter north of the Red River) were advancing in platoons up my legs, apparently intending to bivouac somewhere inside my shorts. Before I could mount a counterattack, I learned to my chagrin—and to Ned’s amusement—the reason they were given the name “fire” ants.

Lake Travis

In all the time we spent together in Austin, I hadn’t realized how like Ned was in appearance and nature to the writer whose letters I was reading and copying at the Ransom Center. Both wore round, wire-rim glasses, both had a mass of curly hair, and both were intensely attuned to the minutiae of the world around them. Many years later, I recognize that Denton Welch’s sometimes frustrating relationship with Eric Oliver—particularly related to their difficulties in the mutual expression of intimacy—in many ways mirrored my continuing friendship and love for Ned, which had begun in Lawrence several years prior to my trip. Among the things that Denton and Eric enjoyed most were their hikes and bicycling trips around the English countryside, the same types of things Ned and I cherished most during my visit to Austin and in my previous experiences with him.

Also, like Denton for Eric, I long ago realized that Ned is one of my soulmates, but also like the writer and his companion, our connection can never be fully and mutually shared; there are barriers. However, no one will ever share in the same way my sense of wonderment in and bewilderment by our world (including geckos, bats, and fire ants) better than Ned.

Daniel J. Murtaugh

Daniel J. Murtaugh teaches literature and history at Park University and at Johnson County Community College. He lives in Kansas City, Missouri.

Good Night, Beloved Comrade is published in the UWP books series Living Out: Gay and Lesbian Autobiographies, edited by David Bergman, Joan Larkin, and Raphael Kadushin.

Lithium Jesus: Charles Monroe-Kane’s memoir of mania

Lithium Jesus: A Memoir of Mania is published today. It is perhaps not surprising that Charles Monroe-Kane, who has heard voices in his head since childhood, should find a career as an award-winning public radio producer and host. Here he talks with us about his life. He’s also chosen links to radio pieces that expand on this story.

Why did you write this memoir? I’d struggled all my life with mental illness—extreme mania, hearing voices—and it got misunderstood in many different ways. It got me in a lot of trouble, actually. And surprisingly, about five years ago, in my 40s, it got really bad. The voices were changing, and I was actually scared. I went to a therapist to talk about it and my therapist was like, “I can help you, but you need to slow down! Write this stuff down!” So I did.

And really, on a deeper level, I wrote the book because I was trying to figure out who the hell I am. Why did I take lithium, and why did I quit taking it and then start taking it again? And what were these voices, anyway? Was it mania? Brain chemistry awry? Angels? A gift? Was I just crazy? I never really thought this book could get published. I just wanted to tell the truth to myself so I could figure it all out.

Can you tell us about your book title, Lithium Jesus? Well, the lithium part is about the drugs. As for Jesus, I grew up in a rough-and-tumble steel mill town, and I was a very manic kid who was pretty out of control and hearing voices, which, of course, I didn’t tell anyone about. One day at an Evangelical/Pentecostal summer camp, I heard people speaking in tongues for the first time. It sounded, structurally, very similar to the voices in my head. That didn’t scare me; I actually found it comforting. I ended up becoming a born-again evangelical Christian because I felt a kindred spirit with those people. And once I got the guts, I also spoke out loud the voices that I’d been hearing for years. That led some people to think I was anointed by God, and when you’re 14, 15, 16 years old, and grownups see you that way, that’s one hell of an ego boost. It was also a good feeling to think that God was speaking through me. I thought the voices in my head were angels. It was beautiful at the time!

Later you made a huge leap from being a clean-cut Christian to a lifestyle that included lots of mind-bending drugs. Why? I think the reason was twofold. One, when I left the church and God, I was pretty lost. You can imagine, your whole life is wrapped up in Jesus, and when that’s gone but you still have these voices leftover . . . that was very difficult for me.

Second, I wanted to rebel. In high school I didn’t drink, smoke, or have sex. But I wanted to do those things! Of course, my introduction wasn’t beer: it was psychedelics. And that’s not surprising, really. I went from having charismatic experiences in church to taking psychedelics because it was familiar. I liked it. I wasn’t afraid of it. And I did a lot of it. Before it turned into abuse, it was a way for me to be both transcendent and an atheist. I still sincerely believe drugs are a way to do that. I just don’t think you should do lots and lots of them without a guide or some help.

This is your story, but you’re not always a hero in it. I think many people make themselves the goat of their own story because they’re embarrassed about their own past. It’s one or the other, right? We either exaggerate to belittle ourselves or to make ourselves great. If we were all a bit more honest, we’d find out we’re all both sinners and saints.

With this book, I said to myself, “I’m not going to judge the church. I’m not going to judge the people I did drugs with. I’m not going to judge anybody, including myself.” Because who wants to read that? Look, salvation is the journey, not the destination. So let’s quit denying how we got to the place we are at and just chill the fuck out. And keep on down the path, you know?

You’re a public radio producer. Did that influence the way you tell your life story in this book? Yeah, when I was staring at the blank screen, trying to “just write,” I didn’t even know where to start. But I knew I had about seventeen core stories I wanted to tell, stories that I’d told many times before. So I decided to treat the whole thing as a radio producer would.

Here in Madison, I usually go drinking on Thursday nights with my buddies at our local bar. I decided to start bringing my recorder to the bar, and I’d record myself telling these stories. Then I would go home and transcribe and edit them, and I’d put them in chronological order and add some connective tissue to make them work. A few more intimate pieces I recorded alone. So the whole thing’s very oral, because that’s what I know how to do. But I would advise other people to try this. You think you can’t write a book, but I bet you can talk! Then see what you get.

[Listen to a radio interview with Charles Monroe-Kane about hearing voices, and talking to God, on the To the Best of Our Knowledge radio program.]

Charles Monroe-Kane has won a Peabody Award for his work as a senior producer and interviewer for the program To the Best of Our Knowledge, broadcast on 220 public radio stations. He has reported for National Public Radio’s Morning Edition and All Things Considered.

New Books For September 2016

We are pleased to announce these three new books arriving in September.

Publication date: September 6
MY SON WEARS HEELS
One Mom’s Journey from Clueless to Kickass
Julie Tarney

“A memorable account of one young person’s journey toward self-identity and a valuable parenting guide for a new era of gender awareness and acceptance.”—Foreword

Julie Tarney

“Not only does the book chronicle an especially memorable mother-son relationship, it also suggests that the best parenting is the kind that does not forcibly mold a child into what he/she ‘should’ be but lovingly allows him/her the freedom to follow his/her own special path. A fearlessly open and frank memoir.”—Kirkus Reviews

Publication date: September 13
LITHIUM JESUS
A Memoir of Mania
Charles Monroe-Kane

As featured on This American Life

Charles Monroe-Kane

“A young man grapples with bipolar ‘voices’ via religion, hedonism, activism, and Lithium. In his debut, Monroe-Kane, a Peabody Award–winning public radio producer, brings a fresh perspective to familiar memoir territory. . . . [A] compelling account of wrestling with inner turmoil against gritty, dramatic international settings.”—Kirkus Reviews

“This humble, funny, raw (yes, sex) book is a pell-mell kaleidoscope of faith, drugs, bawdy behavior, and mental illness that resolves not in soft focus or shattered glass but in the sweet important idea that there are many ways to be born again.”—Michael Perry, author of The Jesus Cow

Treehab book cover Publication date: September 27
TREEHAB
Tales from My Natural, Wild Life
Bob Smith

“Smith, a successful comedian and author of both nonfiction and fiction, has lived with Lou Gehrig’s disease [ALS], and even though he now communicates through his iPad, his wit is as sharp as ever. . . . Never moving too far from his comedic nature, Smith delivers one-liners throughout, and nothing is off-limits. A truth-telling tour conducted by an agile guide.”—Kirkus Reviews

Bob Smith

“To say that Bob Smith can make a hilarious one-liner out of everything from imminent ecological catastrophe to his own struggles with ALS is to emphasize only one aspect of the beautiful and devastating Treehab. This is a profound meditation on the fragility of life and the enduring power of tolerance, love, and the many ways of creating families. A smart, funny, inspiring guide.”—Stephen McCauley, author of The Object of My Affection