Giuseppe Pontiggia, "Born Twice"

I recently picked up the English translation of the Italian novel Nati due volte by the late Giuseppe Pontiggia, because it seemed like my kind of subject--the narrator is a father whose second son has cerebral palsy. It's not so much a novel as a series of vignettes, thirty-eight scenes across the son's first three decades, in the father's marriage and work lives. I have no way to judge whether the translation is a good one, but some of the observations are very sharp, unsentimental, like this description of another parent, a mother in a parent support group:

Her son's case is not serious; he has trouble walking, and physiotherapy alone will probably take care of it. She tends to observe us with careful and detached curiosity, like a first-class traveler visiting the third-class deck. She never neglects to mention the minor nature of her son's condition. When we're discussing the most difficult cases she opens her eyes wide in a kind of theatrical solidarity, but you can tell that hearing other people's stories simply offers her yet another form of reassurance. (p. 69 in my copy, at the beginning of the chapter titled "Pleasure Island")

Yep. Met her, or at least met her American sisters (and brothers). Other standout chapters for me were focused on the son's school principal, a visit with a dementia specialist, and a lot of the conversations with the son (Paolo) as a teen and young man. The title phrase, Born Twice, refers to a counselor's advice that "These children are born twice. They have to learn to get by in a world that their first birth made difficult for them. Their second birth depends on you, on what you can give them...." I remember being aware of that, when my son was first born. I had been a teacher, I knew full well that birth didn't have the last word on anyone's outcomes in life.

Long overdue updates...

Goldfish called me "a real community blogger" back in January, but I haven't been doing a very good job of that lately! A few efforts to make up for that:



The SIXTH annual Blogging Against Disablism Day (BADD) is coming up on May 1 (a Sunday this year), coordinated as always by Goldfish. We've participated every other round, and I'll try to get something ready for this year too--but that's one day of the year you never need to worry about finding amazing blogging on disability culture, disability rights, and the disability experience. Join in by following the directions at the link above.

There was no Disability Blog Carnival this month, but check out the Assistance Dog Blog Carnival or the Chronic Babe Carnival for all your link-love needs. Also, the next Blog Carnival of Mental Health should post on April 30th, so that's coming up soon (submissions requested by April 27).

Disability Blog Carnival #75 is up NOW!

[left: blog carnival logo featuring black-and-white historical image of a hospital, with the words "disability blog carnival/can't shut us up now" superimposed in yellow scrawly print]

It's a milestone! And to mark the occasion, Emma at Writer in a Wheelchair has this month's edition of the Disability Blog Carnival, with the theme "Milestones." The milestones represented include weddings, new and improved wheelchairs, first long cane, turning 21, new diagnoses, sad holidays, successes in advocacy... well, suffice to say it's another strong, diverse, honest collections of posts. Well done to Emma and all the contributors.

Next month's edition of the Disability Blog Carnival is scheduled to be hosted at Finding My Way: Journey of an Uppity Intellectual Activist Crip. More on that as details become available.

UPDATE 4/13: Cheryl at Finding My Way had to cancel--anyone available to be a last-minute substitute host?

No, Amy. Just... no.

I miss the FWD blog for all kinds of reasons, but one of the features they did really well was "Dear Imprudence," reviewing advice columnists' advice on matters pertaining to disability. Now, I don't claim to have anything like their wealth of insight on the subject, but you don't need much insight to realize that today's Ask Amy advice is just wrong.

The question comes from a woman who uses a wheelchair (she explains that her mobility is affected by multiple sclerosis). Her son is getting married soon, and she wants to know how they can handle the mother-son dance at the reception. So far so good. Reasonable question, especially if she hasn't ever been in a dancing situation while using a wheelchair before. And a mother-son dance is already kind of an anxious-making situation--how many times in life are you dancing with your son, while a room full of all the people you love just watch?

Amy starts off okay--she asks a spokeswoman from the National MS Society to comment. That person just encourages the mother to have fun and enjoy the music:

"When we have events with dancing, people in wheelchairs treat the wheelchair as their legs. A wheelchair can easily move to and fro to the music. Your son can spin you about and you can even circle around him in your chair. Just think of your chair as your chariot. The key is to take this with a bit of grace and humor. The chair is the tool for you to enjoy the music and the key is to have fun."

Fine, for a soundbite--nice note of reassurance that there are plenty of times that people use wheelchairs on a dance floor. And Amy could have stopped there, and all would be okay, but she decided to add her own suggestion:

Your son might want to show his solidarity to his mom by borrowing a wheelchair for his own use during this special dance with you. He could appoint two ushers to wheel you both in a lightly-choreographed duet. You'd have to work this out ahead of time, practice a little, and make sure everyone involved was sober.

Uhhhhhhhhh....... this is a bad, bad idea, Amy, for a lot of reasons. First, the son wouldn't be showing "solidarity" by borrowing a wheelchair (and from whom, exactly?). The mother doesn't sound like she needs any gestures of "solidarity," anyway; what she needs is a dance partner. If she doesn't know how to dance in a wheelchair, and he doesn't know even how to use a wheelchair, then two wheelchairs digs them even further into confusion, no?

Appointing ushers to wheel you both... oh my. The mother of the groom may well wheel her own chair ordinarily--she doesn't say in the letter. If so, it's weird to suggest that she not do so for the dance. The idea of rounding up two random ushers to make a pas de quatre (?), well.....now they'd have four people on the dance floor who don't know what to do--and the whole mother-son dance aspect is out the window. Oh, but it will be "lightly choreographed." They'll "practice a little" and "make sure everyone is sober." Sure. Dancing gracefully together for an audience only requires a little planning and a blood alcohol level below .08. Right?

Grrrrr. I was at least happy to see that the very first comment called Amy's advice "tacky," "condescending," and "mocking." Right on, and then some.

Disability Blog Carnival #74 is up NOW!

[Visual description: historical image of a man in profile, facing right; he has a peg-type prosthetic right leg, and is using a walking stick. The words "Disability Blog Carnival" are superimposed. This was the second Disability Blog Carnival logo, first appearing in early 2007.]

Go have a read at Through Myself and Back Again, where Lilwatchergirl has assembled a good collection of links around the theme of "Participation." This edition of the carnival has "previews," little clips from each linked blog post, so you can get a taste before clicking through to the whole post.

Next edition of the Disability Blog Carnival is #75, and will be hosted by Emma at A Writer in a Wheelchair. Emma also hosted the 50th edition of the Carnival, so it makes some kind of sense that she's back for this milestone--and hey, the theme of her edition is....Milestones! Click over to read her invitation and instructions, then plan to participate (!) before the March 25 posting date.

Cerrie Burnell's Arm, Part 2

Wow, so two years after I first wrote about this, Cerrie Burnell's arm is still a matter of controversy? Maybe because I'm also reading Sue Schweik's The Ugly Laws right now, it seems amazing that in 2011 we're still anxious about the sight of an arm that doesn't end in a hand. For recent blogging about Cerrie Burnell's story, see Planet of the Blind and Bess's The Right to Design, among others.

I had just finished reading (and retweeting) that last link when my daughter's newest issue of American Girl magazine arrived in the mail. [visual description: girl holding a magazine open, with the story "Lizzy's Ride" visible; one page is a large photograph of a girl in equestrian gear, riding a pony, with her arms raised; one arm ends above the elbow]

"Lizzy's Ride" is a six-page first-person story about a Pennsylvania girl who rides ponies in competition. Lizzy says "I was born with only one hand. It might seem like that would be a big deal, but it's really not." The story isn't about her arm, it's about her ponies and how she cares for them on her family's farm. (There's video of Lizzy riding on the American Girl website.) But clearly, the editors at AG don't think that such things should be kept under wraps, either.

February 17: Marjorie Lawrence (1907-1979)

Born on this date in 1907, Australian soprano Marjorie Lawrence (show above in her wheelchair, smiling in a hallway for LIFE magazine; a man stands behind the chair; they appear to be dressed for a formal event).

Marjorie Lawrence was a noted performer of Wagner heroines. In 1941, while appearing in an opera in Mexico, she contracted polio. Eighteen months later, after treatment with Sister Elizabeth Kenny, she returned to the stage. Lawrence generally performed in a seated or reclining position thereafter, with creative staging that incorporated her stance into the visuals. The photo below, also from LIFE magazine, is from a performance by Marjorie Lawrence after polio (she played Venus--shell and all!). She taught after she retired in 1952, near her home in Hot Springs, Arkansas, until her death in 1979.
[Visual description: Black-and-white image of about eleven women in costume, on stage; the central woman, Marjorie Lawrence, lounges across a stylized throne-like shell, while the others around her are lounging or standing; there is a man in the foreground, crouching against the front edge of the throne/shell]