The Sparrow

I've been reading The Sparrow, by Mary Doria Russell. It's a captivating novel about a Jesuit-funded mission to contact newly-discovered aliens on a planet in the Alpha Centauri region of space. It's set just twelve years into the future -- 2019 -- and, well, the story doesn't seem to be any more about disability issues than the average novel, which is to say that there is always a little something about impairments and the human condition in most fiction. Though the mysterious happenings in the far reaches of space do involve horrific damage to one of the main character's hands, I haven't read far enough yet to see what that's all about.

But, interestingly, there's this, about the priesthood and celibacy:

It would not have surprised Emilio Sandoz to learn that his sex life was discussed with such candor and affectionate concern by his friends. The single craziest thing about being a priest, he'd found, was that celibacy was simultaneously the most private and most public aspect of his life.

One of his linguistics professors, a man named Samuel Goldstein, had helped him understand the consequences of that simple fact. Sam was Korean by birth, so if you knew his name, you knew he was adopted. "What got me when I was a kid was that people knew something fundamental about me and my family just by looking at us. I felt like I had a big neon sign over my head flashing ADOPTEE," Sam told him. "It's not that I was ashamed of being adopted. I just wished that I had the option of revealing it myself. It's got to be something like that for you guys."

And Emilio realized that Sam was right. When wearing clericals, he did feel as though he had a sign over his head flashing NO LEGITIMATE SEX LIFE. Lay people assumed they knew something fundamental about him. They had opinions about his life. Without any understanding of what celibacy was about, they found his choice laughable, or sick.

The single craziest thing about being blind, using a wheelchair, having an artificial limb ....

When I was new to being visibly disabled, a teenager, I thought of this mixture of the inability to blend and being made to symbolize something outside my own true experience as a kind of odd celebrity. People stare wherever you go. You use back entrances, meet with managers (and busboys) to get into venues through long back hallways before arriving at your reserved seats, have special policies that apply just to you. I could be tardy to my high school classes because it was assumed the elevator made me late. (Of course, it was often the elevator.)

There was a special White House tour for crips when I visited DC with my family years ago. I was spotted and we were literally pulled out of the very long ticket line and told to just approach a particular gate at a certain time without need for passes. As instructed, we jumped the line at the Washington Memorial too. But I have no sense of whether our special gub'mint tour included extras or deprived wheelchair-using folks of something special I'd have liked to see. As far as I know, I didn't have the option of declining these services -- it was the "accessible" gimp tour or nothing.

Some of this has been alleviated by ADA compliance over the years. I don't know about the DC sites -- the last time I visited just as the ADA was passed and much had yet to change.

But the single craziest thing about my life with severe physical impairments has always been this bizarre social exchange about what would otherwise be a private aspect of my body and my life. Not just the architectural barriers that must be negotiated, but the prayers, the judgments and the self-conscious comments of others designed to satisfy curiosity or put themselves more at ease.

Steve Kuusisto has blogged a bit about this recently:

They've spotted the guide dog. They see you are by yourself. They are good hearted people. They want to talk about dogs or the fact that they have a blind uncle, or auntie, or they have a blind neighbor, or maybe their postman is blind and for some unknown reason he's still delivering the mail by touch and isn't this a miracle?

Isn't it curious that the celibacy of priesthood, interracial adoption, being blind, and sitting on wheels all provoke remarkably similar public experiences? If you trust the fictional truth in the book I'm reading, that is. And I do. I do.

Flannery O'Connor: The "crippled hillbilly Emily Dickinson"

It's nice to know I have people who read my blog, but even better is to know they are smart folks thinking through complex ideas even when not commenting here. One reader alerts me to the recent New York Times travel piece where reporter Lawrence Downes visits Flannery O'Connor's Georgia and compares it to the gothic and captivating South or her short stories and novels. Here's the link to the NYT article, which itself links to both a brief slide show of O'Connor's farm near Milledgeville, GA, and an excerpt from her short story "A Good Man is Hard to Find." And because NYT links sometimes frustrate or fail as they age, here's another source for the same article.

From the article:

Her output was slender: two novels, a couple dozen short stories, a pile of letters, essays and criticism. But her reputation has grown steadily since she died. Her “Complete Stories” won the National Book Award for Fiction in 1971. Her collected letters, “The Habit of Being,” banished the misperception that she was some sort of crippled hillbilly Emily Dickinson. They revealed instead a gregarious, engaged thinker who corresponded widely and eagerly, and who might have ranged far had illness not forced her to stay home and write.

From my reader, in an e-mail:

She WAS a crippled hillbilly Emily Dickinson, and there ain't a damn thing wrong with that. It's as if [Downes] has to assure himself she is "more" than that, or he can't deal with his own admiration. The idea that a crippled hillbilly knows more than he does about sin and redemption, the meaning of life, the horrors of deception, etc. ... well, that just can't happen. So, he elevates her, supercrip style, yet even ultimately denies her that full status.

In fact, though he fails to make the connection between O'Connor's lupus, her use of crutches to get around and the frequent disability of her fictional characters, Downes does list several memorable ones:

O'Connor's characters shimmer between heaven and hell, acting out allegorical dramas of sin and redemption. There's Hazel Motes, the sunken-eyed Army veteran who tries to reject God by preaching "the Church of Christ Without Christ, where the blind don't see, the lame don't walk and what's dead stays that way." Hulga Hopewell, the deluded intellectual who loses her wooden leg to a thieving Bible salesman she had assumed was as dumb as a stump. The pious Mrs. Turpin, whose heart pours out thank-yous to Jesus for not having made her black or white trash or ugly. Mrs. Freeman, the universal busybody: "Besides the neutral expression that she wore when she was alone, Mrs. Freeman had two others, forward and reverse, that she used for all her human dealings."

Then he says, emphatically: "These people can't be real." Much like O'Connor herself, who -- thank God -- is not the "crippled hillbilly Emily Dickinson" he was afraid she might be.

Books for the new year

Happy New Year everyone!

Like every book lover I know, I've got a towering (and growing) pile of books waiting to be read. I thought I'd share a brief list of some books from that pile that I plan to read in 2007. All of these are disability-related and currently wedged between my full bookshelf and dresser. If you've already read them, are interested in discussing them, or happen to be the author, this is your heads-up to what I hope will be interesting future discussions here on wherever these books take us.

The Speed of Dark by Elizabeth Moon -- Moon won the Nebula Award in 2003 for this novel told from the perspective of a young autistic man. Normally a writer of military sci-fi, this story apparently differs from the author's usual genre and was prompted because she has a child with autism.

Geek Love by Katherine Dunn -- This will be a reread for me, but I haven't been back to it since I first found it at the fabulous feminist bookstore Women and Children First in Chicago when it was originally published in 1983. An amazing novel about carnival freaks and disability told in first-person by Olympia Binewski, a bald, humpbacked albino dwarf.

Crip Theory: Cultural Signs of Queerness and Disability by Robert McRuer -- From the Amazon description: "McRuer examines how dominant and marginal bodily and sexual identities are composed, and considers the vibrant ways that disability and queerness unsettle and re-write those identities in order to insist that another world is possible."

Planet of the Blind by Stephen Kuusisto -- Fellow disability blogger Stephen's first memoir.

My Body Politic by Simi Linton -- Author of the excellent Claiming Disability: Knowledge and Identity tells her personal story.

Blackbird Fly Away by Hugh Gallagher -- A personal memoir.

By Trust Betrayed: Patients, Physicians, and the License to Kill in the Third Reich by Hugh Gallagher -- A definitive book detailing the eugenics movement against disabled people in Nazi Germany. Gallagher also wrote FDR's Splendid Deception.

Wicked by Gregory Maguire -- I read this while in the hospital and unable to blog about it. An alternative telling of The Wizard of Oz from the Wicked Witch Elphaba's point-of-view. Disability and physical difference everywhere.

I also hope to read Jen Burke's A Life Less Convenient and Stephen's newest book, Eavesdropping, but I haven't bought them yet.