RIP: Nancy Eiesland (1964-2009)

[Image: a black-and-white portrait of Nancy Eiesland, from her faculty webpage]

Sad news: Nancy Eiesland of Emory University has died this week, from cancer. If you're interested in how disability studies scholarship might inform the sociology of religion, you won't get far without running into some of Nancy Eiesland's work, especially The Disabled God (Abingdon Press 1994) and Human Disability and the Service of God (an edited collection, Abingdon Press 1998).

Eiesland wrote last year in a campus publication about her lifelong experiences with surgeries and pain and medication, noting "for most of us, pain will be an ordinary partner in an ordinary life." Her colleague and friend Christian Scharen has this remembrance. According to the Facebook group "Friends of Nancy Eiesland," a memorial service is being planned for the afternoon of March 22, in Cannon Chapel on campus.

June 9: Cole Porter (1891-1964)

American composer and songwriter Cole Porter was born on June 9, 1891. He's best known for standards like "Just One of Those Things," "I Get a Kick out of You," and "I've Got You Under my Skin." In 1937, he was in a serious riding accident, and fractured both legs. He used a wheelchair or crutches for the last twenty-seven years of his life, but because few buildings were accessible in the mid-20th century, he was often carried into venues to perform, or parties to attend. He put his piano on blocks and continued to compose from his wheelchair. His post-injury works included Kiss Me, Kate (1948), which won him a Tony Award.

Chronic and severe pain, depression, alcoholism, and drug addiction were also part of Porter's difficult life after the accident--not all of that directly or solely traceable to his injuries, of course. He is known to have been treated with an early version of electroconvulsive therapy (ECT). Porter's right leg was amputated, after dozens of surgeries and decades of chronic pain, in 1958. He was fitted for a prosthetic leg, but never used it comfortably, and rarely left his home in his last years. During his life, the extent of his pain and injury were mostly unknown beyond his closest friends, but Porter has since been depicted as using a wheelchair in the 2004 film De-Lovely, and in stage productions of Red Hot and Cole.

Note: The Gay for Today bio-blog also noted Porter's birthday today.

Rebecca Horn and Flannery O'Connor

There were a couple birthdays I might have marked here this weekend if I wasn't otherwise occupied-- but I want to post a quick note anyway, with images:

Rebecca Horn (b. 24 March 1944) is a contemporary German performance artist, and filmmaker. In the mid-1960s, she was living in Barcelona and working on fiberglass sculptures; working with fiberglass without a mask landed her with a serious lung disease, and she was hospitalized for a year for treatment and recovery. During her time in the sanatorium, she drew, and sewed, and tried to create objects that would extend her body from the hospital bed. The image at left shows her "Finger Gloves," a 1972 performance piece in which she wore long balsa extensions on her fingers, an example of her body-extension creations, which play with ideas of touch, sensation, protection, and imperfection.

American writer Flannery O'Connor (25 March 1925-3 August 1964) inherited systemic lupus from her father. In her two novels and 31 short stories, there are running themes of disability, pain, violence, monstrosity, religion, and an unsentimental, often gothic dark humor that is charactistic both of Southern literature and of the era, but may also reflect her personal experience of chronic pain and illness. O'Connor began using crutches in the 1950s (as shown in the image at right), because the powerful medications she took to manage her pain weakened her bones. She said, of writing through chronic illness, "I have enough energy to write with and as that is all I have any business doing anyhow, I can with one eye squinted take it all as a blessing. What you have to measure out, you come to observe more closely, or so I tell myself."

For once, tell a different story

The Ehler-Danlos Syndrome community (with support from the American Pain Foundation) is expressing strong opinions to ABC after the network's Medical Mysteries series featured an episode about EDS, an inherited condition that affects the structure of connective tissue throughout the body. Folks with EDS generally have "fragile skin and unstable joints," though the syndrome has a wide range of manifestations, according to the Ehler-Danlos National Foundation. Media attention, when it comes to EDS, almost invariable focuses on those with very hypermobile joints and "elastic" skin-- the "party tricks" of the impairment. "Circus Star is Real-Life Elasti-boy" trumpets the ABC press release.

Where's the harm? Well, for one, it's tedious to tell the same story over and over again. Any show that can be summarized as "Hey, look at this guy!" is hardly an innovative use of any medium. And sensationalizing bodily difference doesn't really educate or "raise awareness," it just encourages unwarranted pity and voyeuristic stares. Worse, if the only story about EDS that the public ever sees is this kind of gee-whiz coverage, it distracts from the more pressing concerns and everyday issues important to people with EDS: the distorted public perception can interfere with timely identification and treatment, and stigmatize those with the diagnosis.

The ABC Primetime message board is lit up with eloquent protests from the EDS community, and some pretty clueless responses from the show's producers. They describe difficulty in finding a doctor to take their pain seriously, they describe daily pain and frequent surgeries, and the real possibility that the effects of their EDS will be fatal someday. "No, EDS is not at all a funny disorder worthy of a circus side-show," explains one viewer.