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Farber's disease

Farber disease (also known as Farber’s lipogranulomatosis or ceramidase deficiency) describes a group of rare autosomal recessive disorders that cause an accumulation of fatty material in the joints, tissues and central nervous system. The disorder affects both males and females. Disease onset is typically in early infancy but may occur later in life. Children who have the classic form of Farber’s disease develop neurological symptoms within the first few weeks of life. These symptoms may include moderately impaired mental ability and problems with swallowing. The liver, heart and kidneys may also be affected. more...

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Other symptoms may include vomiting, arthritis, swollen lymph nodes, swollen joints, joint contractures (chronic shortening of muscles or tendons around joints), hoarseness and xanthemas which thicken around joints as the disease progresses. Patients with breathing difficulty may require insertion of a breathing tube. Most children with the disease die by age 2, usually from lung disease. In one of the most severe forms of the disease, an enlarged liver and spleen (hepatosplenomegaly) can be diagnosed soon after birth. Children born with this form of the disease usually die within 6 months.

There is no specific treatment for Farber’s disease. Corticosteroids may be prescribed to relieve pain. Bone marrow transplants may improve granulomas (small masses of inflamed tissue) on patients with little or no lung or nervous system complications. Older patients may have granulomas surgically reduced or removed.

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The stuff life is made of: five group shows in New York recently celebrated the work - and in many cases the memory - of artists caught in the HIV/AIDS
From Art in America, 4/1/97 by Hollad Cotter

When accounts of American art in the late 1980s and 1990s are written, recurrent themes will emerge: the body, sexual identity, childhood, mortality. And all of them, directly or indirectly, link up to the AIDS pandemic, the protracted medical emergency that has scarred the era.

The list of artists who have died of the disease is incalculable. Some names are known, but many are not, either because their careers lay outside the mainstream gallery network, or because their art has been lost or destroyed. A scenario repeats itself: an artist dies, an apartment has to be emptied, personal effects get bundled into an attic, a basement, a trash compactor. The work of a lifetime vanishes.

Last fall and winter, in observance of Day Without Art/World AIDS Day, a harvest of such potentially fugitive material was on view in five group shows in New York. All of the work was by artists who are either living with or have died of HIV/AIDS and who, with two exceptions, have had their careers documented, at least in rudimentary fashion, by the Archive Project, the grassroots arm of the advocacy and service organization known as Visual AIDS. (See sidebar.)

The exhibitions had their strengths and weaknesses, though their overall quality was bracingly high. And together they gave a vivid picture of the wealth of art being produced in the shadow of AIDS, and of the immense toll the disease continues to exact.

"A Living Testament of

the Blood Fairies"

Of the five shows, the most ambitious and polished was at Artists Space. "A Living Testament of the Blood Fairies" was a gathering of 12 artists organized by Geoffrey Hendricks, Frank Moore and Sur Rodney (Sur), all of whom are Visual AIDS board members. The work embraced a wide range of mediums. Some of it was AIDS- or gay-specific; most of it, though, centered on themes of vulnerability, self-scrutiny and community. The approach was oblique, poetic, funny, a far cry from the polemical heavy weather usually associated with "political art."

The bittersweet tone was set in two pieces by Elliott Linwood which opened the show. One was a slide projection of words from Sir J.M. Barrie's Peter Pan: "When the first baby laughed for the first time, the laugh broke into a thousand pieces and spread over the entire world, and that was the beginning of fairies. But all the faries are dying now because children know such a lot they don't believe or laugh anymore."

The other, titled Initiation, is an immense glass jar filled with 200 pounds of honey in which uncapped syringes float. The amber color of the liquid is alluring but disturbing (it suggests clouded urine); the syringes are reminders of life-saving medication but also of intravenous drug use through which the AIDS virus can be transmitted.

Linwood's blend of whimsy and edginess had a counterpart in small paintings by Copy Berg that were part Paul Klee, part Keith Haring. The central cartoon form in POOF: For All My Friends Who Have Disappeared is a cross between a pansylike flower and an explosion. In Die You HIV Scum pills are flushed with a Lichtensteinesque "Splash!" Much of Berg's work, though, took the form of cartoonlike drawings which spilled from a fax machine in the gallery (they were free for the taking), and are reminders of a time in the recent past when the artist faxed work daily to his lover from a hospital bed.

Cartoons also figure in Mike Parker's large off paintings with their amalgam of art history and pop culture. Bambi appears in one, Batman in another, and the artist's CoCo adroitly turns Charles Demuth's I Saw the Figure Five in Gold (1928) into a high-gloss homage to Chanel. (Demuth, it will be remembered, turned out homoerotic depictions of New York gay life between the wars.) Also interlacing Pop with camp were photo-collages by Joe De Hoyos which emblazoned the names of gay icons -- Haring, and the porn star Al Parker, both of whom died of AIDS -- on fields of bright flowers and candy-colored geometric shapes.

All the work in the show, in fact, was text-based, though the texts took many forms. David Nelson's beautiful, time-infused If Ida Knowd carries a single regretful sentence. He handwrote the words, which he remembered his grandmother saying when he was a child, in fluid script across a scroll-like series of photograms, using the sand from broken hourglasses in place of ink. Nelson created the work while his lover, the artist David Knudsvig (1947-1993) was dying; little hourglasses, bandaged with silk tissue and hanging from the bottom edges of the paper, were the sources of the sand but they also served as temporal markers for the progress of the piece as it was written over several days.

In Robert Blanchon's Untitled (The Act of 1648), sheets of typewritten words alternate, in grid formation, with head shots of men facing away from the camera, each wearing a garment label affixed to the nape of his neck. The typed words -- dim, as if produced by a worn ribbon -- quote from a 17th-century English ordinance dictating the kinds of cloth permitted for making shrouds for plague victims; the labels on the men's necks, cut from brand name shirts, correspond to those materials.

An assemblage of painted panels by Robert Farber (1948-1995) quotes historical texts to draw parallels between the AIDS epidemic and the plagues of medieval Europe. One panel is inscribe with the last appeal, cut off in mid-sentence, of a stricken 14th-century Irish monk; another bears a statement by the American film historian Vito Russo: "Some day the AIDS crisis will be over. And when that day has come and gone, there will be people alive on this earth who will hear that once there was a terrible disease and that a brave group of people stood up and fought, and in some cases died, so that others might live."

If Farber's work has the distanced, measured reserve of a civic monument (it was originally part of a gallery-filling installation at Artists Space), another piece in the show was actually conceived as public art. The series of large black-and-white photoprints by Jorge Veras was commissioned by the MTA Arts for Transit and the Gay and Lesbian Anti-Violence Project, and installed for a time at the Borough Hall station in Brooklyn.

The tone of the works is informal and neighborly. The young black and Hispanic men and women shown dancing in clubs are the artist's friends; the poems that accompany their images -- "Now I feel the slow beat of my heart, reminding me of my solitude" -- have the romantic, melancholy pun of pop songs. (The photoprints at Artists Space, incidentally, were the originals, which had been installed without protective covering in the subway station; though they were a bit scuffed-up, they had not been in any way defaced.)

In contrast to this community-directed project, the art of the two women in the show was intimately and intensely personal. The light table Rebecca Guberman provided for examining lab photos of infected blood cells was also littered with samples of her own HIV-positive blood. Other microscopic photos along with excerpts from her medical and psychiatric reports printed on sheets of transparent plastic are bound into a book. The pictures of infected cells are annotated with comments written in ballpoint: "ugly green," she wrote on one, "claim it," on another).

The artist Valerie Caris has performed in avant-garde film and theater (with Ethyl Eichelberger (1945-1990), among others) and as a stripper. Her installation was an attempt, witty and somber, to reconcile these roles with the fact of her illness. Provocative soft-porn nude studio shots of the artist were hung between two handmade costumes. One is a purple bustier embroidered with a poem: "Her majesty enjoyed your visitation, she who danced her way into the arms of Death ... Sovereign of herself amid the Holocaust." The other, titled Vestment, is a hospital gown stitched with printouts of her blood analyses and lined with red satin.

Some of the show's most moving pieces were also the smallest. Martin Wong contributed three wonderful paintings in his signature visionary social-realist style. One is an image of two Latino men, lovers, dressed entirely in white and parting in prison; another is of two uniformed firemen locked in a kiss; a third, titled Time for Love, shows gold wristwatches floating like a host of angels above tenement rooftops in a brilliant night sky. (Wong is one of the best painters to have emerged from the East Village art scene of the '80s; he is scheduled for a retrospective at the New Museum of Contemporary Art next year.)

Finally, there was a striking oil painting by Brian Buczak (1954-1987) titled Trompe l'Oeil Death. A cross between a traditional vanitas and a John F. Peto vernacular still fife, it meticulously depicts the speckle-patterned cover of a notebook, onto which a pencil drawing of a death's head has been (illusionistically) pinned with a tack as red as a drop of blood. Half-hidden around a comer in the gallery, the painting brought a little shock of surprise, but encouraged a slow, meditative reading. The same was true of much of the work here.

"ABC Index"

Other paintings by Buczak, as well as watercolors by Berg, could be found in a complementary show at Gracie Mansion/Fred Dorfman Projects, titled "ABC Index" and curated by Hendricks and Rodney Sur.

The exhibition also featured work by four artists now dead. Bern Boyle (1951-1992) was represented by a color photograph of a man's shaved head covered with elaborate tattoos; the Swiss-born Andreas Senser (1942-1989) by geometric paintings and boxy sculptures, the surfaces of which are built up with layered strips of paper and painted saturated red or blue. A piece by Angel Borrero (1950-1994) consists of 70 edge-to-edge Polaroids of a nude male torso posed in front of a homemade version of Duchamp's bicycle wheel. In each the man is provided with neatly penned-in female genitals.

The most intriguing work, though, was by the artist-writer-musician William Bruce Witsiepe (1951-1995), whose elegant Constructivist-style collages of words cut from newspapers create an evocative concrete poetry. Witsiepe's sculptures are also affecting and funny: a tiny cotton-stuffed basket like a doll's bed hung high on the wall, a paper cone sprouting broken guitar strings like dried flower stems. Five of the six artists in the "ABC Index" are on file with the Archive Project (Senser is the exception). It was interesting to observe that none of the works in the show dealt directly with AIDS.

"No Show"

Two exhibitions at nonart venues were real mixed bags. "No Show: Art for a Day Without Art" curated by Nick Debs, was disadvantageously housed in the parish hall of St. Mark's Church, an uncharismatic space, at least for hanging art.

Parker's paintings (of Judy Garland and Jesus this time) were impressive, as were the elaborate mixed-medium pieces by William Cullum. Combining wax, oil, laser prints of digitized pictures and epoxy resin embedded with found materials, they have a compacted, fetishistic feel, closer to that of sculpture than of painting. Their images (a skull, a landscape, cellular forms, a beefcake photo) evoke the thematic threads of sex, death and beauty that run through much of the work in all five shows.

Frank Holiday's paintings of heads spliced with texts and Benjamin Trimmier's of thorny rose stems tied with what looks like a hangman's rope fit with the formally conservative drift of the show. The exception was an untitled sculpture by Tony Feher: a string of plastic bottles filled with blue-tinted water and hung across the gallery like a lifeline. Feher's art made of everyday, ephemeral material extends a poetic conceptual tradition exemplified by the work of Felix Gonzalez-Torres. Expressively speaking, it bums on a low flame, but that's what makes it attractive. Luis Carle and Betsy Trotter were also in the show.

"Day Without Art/World AIDS Day

1996 Exhibition"

This scrappy gathering of works on paper was installed in a narrow, corridorlike space in the offices of Manhattan Borough President Ruth W. Messinger in Lower Manhattan, the only government office in the city to so acknowledge Day Without Art. It brought together figures familiar from the other shows (Berg, Cullum, De Hoyos, Guberman, Holliday, Trimmier, Trotter, Veras) with some not seen elsewhere (Bryan Hoffman, Michael Lee, Abnel Rodriguez, Steed Taylor and Wilmer Velez).

Taylor's pieces were standouts. Each is a dye-transfer print of a nude figure whose body has been elongated by a cut-and-paste process. Steed, who last season at Franklin Furnace showed a poignant series of childhood snapshots in which he had blacked-out his own figure, here seemed to be extending the images of friends and family members -- including his parents -- as if reluctant to let them remain finite in size.

"A Living Testament of

the Blood Fairies: Part II"

Finally, in January, Printed Matter opened a show of books, documents and ephemera titled "A Living Testament of the Blood Fairies: Part II," with Hendricks and Rodney Sur curating once again. It proved a worthy pendant to its predecessor.

A selection of fastidiously designed books by Buczak confirmed him to be an artist of exceptional breadth. And Senser's big, messy, collaged and painted books, with their vivid amalgam of infantine images and words writ large ("fear" recurred like a mantra), were far more dynamic than his sculptures.

Several artists appeared only in this venue. Jose Luis Cortes was one, with a cheerfully iconic gouacheon-newspaper portrait of the writer Reinaldo Arenas, who was imprisoned as a homosexual in his native Cuba and eventually died of AIDS in New York. Another was John Eric Broaddus (1943-1990), best known for his fantastic costumes, with two cutout, handpainted books. A third was Ann Craig (1951-1987), a performer, commemorated with the kind of personal objects that might be turned up in a bureau drawer: a cloth rose, a heart-shaped sea stone, a crumpled cigarette pack, a beat-up pocket notebook.

Also included were two much-admired but still undervalued American artists. Paul Thek (1933-1988) was represented by opened pages from two of his mesmerizing journals. One carries the watercolor image of a waterfall and the handwritten words "We are committing suicide, We are marked"; the other, an ink drawing of a seashell and the words "Mystics of the world unite." (A Thek retrospective, originating at Witte de With in Rotterdam, toured Europe last year, but no American venue could be found for it.)

Photocopied pages from a journal by writer-artist David Wojnarowicz (1954-1992) were also displayed, crowded with notated studies for paintings and performances and detailed records of dreams that were the raw material of his crypto-autobiographical fiction. Suspended over the vitrines was a sculpture by Eric Rhein. An openwork plaque woven of metal wire and filament and ornamented with found bits of jewelry and chandelier crystal, it spells out a single word: "courage."

All of the artists at Printed Matter, with the exception of Senser and Craig, are documented in some form by the Archive Project, and even this modestly scaled exhibition gave some sense of the complexity and variety of art produced under the shadow of AIDS.

Generalizations are difficult, but some patterns emerged in the five exhibitions. Little of the work qualified as "advocacy art" or political art in the ordinary sense: it dealt in metaphor, not polemic. This wasn't art that hammered out a narrow point or that did your thinking for you (in fact, much of it was very slow to reveal its meanings). And even in work where inspiration or execution was iffy (after all the sole criterion for a listing with the Archive Project is seropositive status), distinct individual sensibilities, charged with urgency, came through.

Collectively, the shows also prompted thoughts about the art of our time. Critics who complain that it lacks ambition or focus cannot be looking hard around them. Low and death are not small themes. One might ask for work grander in scale or more sonorous in its formal language, but not for art more intensely personal or more persistently engaged in the facts of living and dying.

Wojnarowicz got the sense of it in a handwritten portrait of his lover, Peter Hujar (1934-1987). It was just a list, short, to the point, but in it the shift from innocence to experience expressed in the J.M. Barrie quotation was succinctly updated: "Peter moved among the rich, Peter moved among the poor, Peter made photographs, Peter listened to music ... Peter dreamed, Peter wept, Peter fucked, Peter had AIDS, Peter died. All this is the stuff life is made of."

"A Living Testament of the Blood Fairies" appeared at Artists Space [Nov. 9, 1996-Jan. 4, 1997]. "A Living Testament of the Blood Fairies: Part II" appeared at Printed Matter [Jan. 9-Mar. 1, 1997]. "ABC Index" appeared at Gracie Mansion/Fred Dorfman Projects [Nov. 19-Dec. 31, 1996]. "No Show: Art for a Day Without Art" appeared at St. Mark's Church-in-the-Bowery [Nov. 7-Dec. 7, 1996). "Day Without Art/World AIDS Day 1996 Exhibition" appeared at the Gallery of the Borough President of Manhattan, the Hon. Ruth Messinger [Nov. 26, 1996-Jan. 2, 1997].

SOME HISTORY

Over the past decade, a few organizations, operating on a shoestring and depending largely on volunteer labor, have shaped programs to protect the work of artists with HIV/AIDS.

In 1992, the Estate Project for Artists with AIDS was founded by Randall Bourscheidt, president of the Alliance for the Arts, a nonprofit advocacy organization based in New York. Embracing all the artistic disciples, the Estate Project published a substantial how-to book, prepared by its director, Patrick Moore, of legal and procedural information, from will-writing to sources for archival technology. The Project remains an important resource, both for advice and for AIDS-related funding in the arts. (The Alliance for the Arts, 330 West 42nd Street, Suite 1701, New York, N.Y. 10036, (212) 947-6340, http://www.artistswithaids.org)

Even earlier, in 1988 the organization called Visual AIDS had been established by members of the New York art community: Robert Atkins, Bill Olander (1950-1988), Tom Sokolowski and Philip Yenawine. (Its current executive director is Nick Debs, who follows Patrick O'Connell.) The group introduced two highly visible symbols of AIDS awareness: the annual Day Without Art (Dec. 1) and the use of the red lapel ribbon as an AIDS awareness emblem, an idea conceived by the artist Frank Moore and members of the Visual AIDS Artists Caucus.

In 1994, Visual AIDS, with the help of funds from the Estate Project, created the Archive Project to document the work of visual artists with HIV/AIDS. Initially coordinated by the writer David Hirch, it accepts, on a first-come-first-served basis, documentation of work by seropositive artists in the form of slides and printed materials (biographies, resumes, personal statements, press clips) and helps artists to document their work by distributing modest materials grants and arranging for work to be photographed free of charge.

As of this writing, the archive is located in a cramped office rented by Visual AIDS form the New-York Historical Society. (Debs and assistant director Choire Sicha are the only paid staff.) Artists interested in having work documented can write to Visual AIDS c/o The New-York Historical Society, 170 Central Park West, New York,, N.Y. 10024, call (212) 579-5440, fax 579-5336, or E-mail visaids@aol.com.

COPYRIGHT 1997 Brant Publications, Inc.
COPYRIGHT 2004 Gale Group

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