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.

Memo to Governor Palin

Some notes about this passage in your speech last night:

"And children with special needs inspire a very, very special love. To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House."

1. We're not friends. We may have some things in common--motherhood, kid with a chromosomal diagnosis, age give or take a coupla years, race, messy dark hair, glasses, check check check--but we've never had a coffee together, or watched each other's kids, or worked on an art project together. And I don't see any of that happening in the future, either. So cut the "you've got a friend" line. I grew up in a state where that sentiment was on every license plate, and it means nothing when used in such a wholesale, consequence-free way. Worse, it devalues the real worth and work of friendship. I like and need friends. You're just not one of them.

(BTW, I also bristle at agency literature using words like "partner"--uh, no. Unless you're willing to take a 3am shift whenever kids are sick, you're not my partner in this.)

2. I don't think "very, very special love" qualifies as a policy. My kid doesn't need your "special love." He needs to have his rights recognized and protected; he needs the appropriate school education the law says he's entitled to; he needs accessibility to make living in the community a reality instead of a goal, and not just when he's a kid, but his whole life. I expect a vision with policy specifics. Hey, there's one!

3. Unless you started being a disability advocate long before your youngest son was born in April of this year, you're not in any position to use the term "advocate" for yourself. It's presumptuous to claim otherwise. You're still learning. Keep learning. Gotta say, I'm glad there were no reporters writing down my every word when my son was four months old--I'm sure anything I might have said about disability back then would have been a bundle of contradictions and confusion, because I didn't have near enough experience to speak otherwise on the subject. (And I'm still learning every single day, after thirteen years.) Presenting yourself as the stereotypical "kn0w-it-all mom" who is (rightly) dreaded by many in the disability world is not doing the rest of us parents any favors, so please rethink that pose.

4. Truth is, I was never going to vote for your ticket anyway, no matter who the VP choice was. But you're sure making me more secure than ever about that position.

ADDED LATER:

5. Belittling the important work that community organizers do? Really not cool.

6. Vice-president Cheney, by all accounts, loves his daughter Mary--but it doesn't make the administration in which he serves any friendlier to gay marriage or same-sex parents. And Sarah Palin, by all accounts, loves her little son--but that doesn't mean the administration in which she'd serve would set any priorities for the equality of people with developmental disabilities.

LINKS: More Palin critiques and commentaries from disability bloggers:

Joel at NTs are Weird
Kara at Disaboom
William Peace at Bad Cripple, and in a sequel post
Sweet Machine guest posting at Shakesville
BadMama at BadMama
Sarahlynn at Yeah, but Houdini Didn't Have These Hips
Ruth at Wheelie Catholic
Dave at Chewing the Fat
Angie at Nuvision for a Nuday (and more from Angie here)
Terri at Barriers, Bridges and Books
Cindy at Bissellblog
CityzenJane at Daily Kos
ABFH at Whose Planet is it Anyway?
Emily Elizabeth at Lovely and Amazing
Kristina Chew at Autism Vox
Nicole at All 4 My Gals
Miryam at Breeding Imperfection
Becky Blitch at Open Salon
Dad at Kintropy in Action

See also Patricia Bauer's really nice FAQ about Palin, Down syndrome, and policy (thanks to Jeff at Big Dawg Tales for the heads up on that one), and the disability-specific portions of both the RNC and DNC platforms, as laid out at JFActivist (thanks to Stephen Drake at Not Dead Yet for pointing that one out).

New book: Gail Landsman, "Reconstructing Motherhood"

[Image description: Book cover featuring a Picasso-esque image of a mother and baby, in overlapping squares of color, with blue predominating.]

I've found Gail Landsman's journal articles useful and insightful for years; I've cited them and shared them with students and friends. So I'm pleased to note that Landsman's got a new book out today, Reconstructing Motherhood and Disability in the Age of "Perfect" Babies (Routledge 2008). Landsman is an anthropologist who studies mothers whose babies have diagnoses such as Down syndrome and cerebral palsy, and how they (we!) revise or reinvent their (our!) ideas about parenting and personhood after learning such diagnoses. (Or not, I guess; some don't.) The chapter titles are a good indication of her topics, but don't communicate the abundance of real, honest, human voices in Landsman's work--including her own. I've probably read article versions of some of these, but it's still going on my wishlist.

Edna Knight, MBE!

From a parent support newsletter I got this morning by email:

We are thrilled to announce that Unique Founder & Life President Edna Knight has been made an MBE in the Birthday Honours List 2008. Having founded the group in 1984 with 5 families, Edna has been a major driving force in its development. The award is for voluntary services to people with a chromosome disorder and their families. Congratulations Edna on a richly deserved award.

I joined UNIQUE when my son was just a year old--because he has a rare chromosome disorder, and way back then (I mean 1996), there were no online discussion boards or blogs or listservs for families to meet each other and learn from each other. At the time, UNIQUE didn't have a way of collecting subscription fees in US dollars, so they just sent me the newsletter for free, for years. It was something amazing at the time, to see the founder's letter on the front page, and discover that she had raised two daughters with rare chromosome disorders (and two without, as well)--they were all adults by the time I subscribed, and just finding that they were living and thriving young women was a huge encouragement when I was first starting out. UNIQUE expanded my understanding of what was possible, and what was happening in the world, when I might otherwise have felt very isolated and fearful. So congratulations, Edna Knight!

November 19: Gene Tierney (1920-1991)

What did actresses Dorothy Dandridge (1922-1965) and Gene Tierney have in common, besides being considered among the great beauties of their generation? Both November birthdays. Both were directed by Otto Preminger in well-known roles (Carmen Jones, and Laura, respectively). Both women, in 1943, had daughters born with significant developmental disabilities. And both women's later lives were emotionally tumultuous. These latter two facts are often linked in brief biographies, whether or not they should be, just because that's the easy story. In fact, the pressures and temptations and health issues they faced were sure more a part of the general dysfunction of Hollywood life, with or without their daughters' disabilities.

I wonder if they ever knew each other--if they ever knew how much they had in common?

Gene Tierney (1920-1991) described her lifelong experience of bipolar disorder in her 1979 autobiography. She was institutionalized on and off through her thirties--not unlike yet another Hollywood beauty, Frances Farmer (1913-1970), had been a decade earlier. In her autobiography, she declared, "I have been subjected to electric shock treatments that deadened my brain, stole chunks of time from my memory, and left me feeling brutalized....Pieces of my life just disappeared." Tierney married her second husband in 1960, and more or less retired from making movies. She died in 1991, from emphysema (she had begun smoking at the beginning of her career, to lower her voice for film roles).

Paging Dr. Cliche ...

The television writers are on strike. This is national news, I realize, but it's also local chatter here--I drive past the picket line at Raleigh Studios Manhattan Beach some days, it's only a mile or two from my house. I was talking to a striking writer at a small dinner gathering last night, and an assistant director who's also affected. That's LA for you. But one show's writers probably shouldn't rush back to work--if recent episodes are any indication of their mindset.

Cilla Sluga at Big Noise explained what was wrong about last week's mess on ER: an episode in which a doctor and a young teen decide the kid (who has a terminal illness) shouldn't live any longer, so they lie to the kid's mother about treatment options--and this is presented as a noble gesture on the doctor's part, not as gross malpractice. One character objects, but doesn't go farther than voicing her objection. (And as Sluga further reveals, the episode was written by an ER doctor at Children's Hospital LA--a scary twist to the story.) In this week's episode, William Peace at Bad Cripple catches another doozy: a wheelchair user is the tired "bitter cripple" stereotype, complete with lines like "anger is my baseline" (which would make a fine t-shirt, but as a summary of a disabled character, ugh). One implication of his storyline is that he can't be a good parent because, uh... because he can't clean the gutters. What?

It wasn't always like this: ER has in the past done much better by the disability community. Characters with physical, mental and sensory disabilities have been presented as rounded human beings with full civil rights, at least as well as any other 44-minute network TV drama has done (admittedly, that's a low standard to achieve). One highlight was a 1998 appearance by Neil Marcus, which was about showing disablist assumptions for the dangerous errors they are.... not about confirming those assumptions for viewers.

I hear that this is ER's last season. Maybe that's for the best.

UPDATE 12-7: William Peace notes that the 300th episode (much hyped, aired this week) was also cringe-worthy.

September 3: Sarah Orne Jewett (1849-1909)

American writer Sarah Orne Jewett was born on this date in 1849, in South Berwick, Maine. She had rheumatoid arthritis from childhood, which must have been especially difficult living in northern New England long before central heating. Brrrr.

But her family (including her father and grandfather, both doctors) encouraged an active and independent childhood when possible:

...the Jewetts took a philosophical view of Sarah's illness, neither denying nor belittling it nor allowing to tyrannize over her life. They were sympathetic, but there was always the expectation that as soon as the pain subsided there were duties and diversions waiting, most of them outdoors. Her father believed that exercise was as important as rest in keeping the disease at bay, and she became amazingly active and sturdy, considering her handicap. A strong cross-country walker, she liked best to strike out across the fields, taking a book along, hunting out rare flowers and herbs and visiting favorite trees as if they were old friends. She was an expert horsewoman and rower, and she enjoyed skating, swimming, and coasting.

(from Paula Blanchard, Sarah Orne Jewett: Her World and Her Work [DaCapo Press 2002]: p. 31)

Patronizing typography?

Type well used is invisible as type, just as the perfect talking voice is the unnoticed vehicle of the transmission of words and ideas.--Beatrice Warde (1900-1969)

Warde's declaration above is from her 1930 lecture, "The Crystal Goblet, or Printing Should be Invisible," and it's saying something that every undergraduate in graphic design is taught: the best font is the one you don't notice.

Well, I noticed. Or rather, my seven-year-old did. When a brochure came in the mail from our regional center, she assumed it was for her, because it was a booklet with bright colors and graphics, and big letters in a child-friendly typeface. Here's a sample:


[Image description: On a yellow ruled background that resembles a sheet of paper from a legal pad, there is purple scrawly text, that reads "Yes No Maybe (I would like to hear more about this)" and in the same font, in black, superimposed on a purple trapezoid, "Other Things That Are Important to Your Family."]

But we soon realized, it was for me--the parent of a regional center client--a questionnaire to complete before a routine meeting next week. Why the childish design? Our regional center's client base is diverse, sure, but every parent they serve is an adult, right? Whether you're a parent with a developmental disability, or a parent with limited literacy or English proficiency, you're still an adult. I understand why the questionnaire should use basic, clear language, but I don't see why this childish font would be used for any adult audience, at least any adult audience you wanted to treat with respect.

UPDATE (7/13/11): Four years later, they're still using the same brochure--got another one in the mail just now. Sigh.

A Mother's Day image

Changing Times: Los Angeles in Photographs 1920-1990 is a new online archive of digitized newspaper photographs, maintained by UCLA Library Special Collections. It's a rich and searchable collection. The following photo stood out for me, as a fine image to share on Mother's Day in the US:
According to the caption at the website, this is Magdalena Wodke, a member of the Totally Confident Disabled Drill Team, with her son on her lap, on a track at Northridge in 1984. It's an LA Times photo from August 1984. What was that team again? The Totally Confident Drill Team was part of Operation Confidence, an independent-living and vocational training project begun in 1980 at Widney High School in Los Angeles. The TC Drill Team performed at the Summer Olympics in 1984, which is when this photo was taken. I can't find more about Magdalena Wodke, or her son (who would be about 23 now).

Dixie Henrikson, RIP

And speaking of older women.... obituaries like this are turning up a lot lately. This brief notice is from the LA Times today (9 April, p. B15):

Dixie Henrikson, 84; Co-Founder of Agency for Retarded Children
Dixie Henrikson, 84, who co-founded the nonprofit agency Activities for Retarded Children, died of lung cancer Tuesday at her home in Valley Village, said her son, Michael. In 1969, Henrikson became frustrated about the lack of activities available for her developmentally disabled daughter, and with another mother formed an organization to address the problem. Henrikson became executive director and Mary Schallert the associate director of the center, which the women formally incorporated in 1975. Together they organized field trips, athletic competitions and dances for children and adults in North Hollywood, and provided a place where the members could socialize. "A lot of people think Easter and Christmas parties are enough for these kids, and that two functions a year is plenty. But these kids have the same needs as any teenagers, and other teenagers don't say, 'Oh, I've been out this month, so I think I'll stay home now,'" Henrikson told The Times in 1986. Henrikson also conducted the group's English Hand Bell Choir, which performed at United Way functions and holiday celebrations in Los Angeles over the years, including Christmas Eve at the Dorothy Chandler Pavilion.

The generation of parents who had developmentally disabled children after WWII, but before the IDEA, included mothers and fathers who worked hard to create programs and opportunities for their kids. Some of those parents were founders of the ARC and other national organizations; some, like Henrikson, got together with another mother and made something local like their North Hollywood project (complete with bell choir). Someone should be catching these folks for oral histories before they're gone--their work was important, and their stories deserve recording.

For further reading:

Barbara Bair, "The Parents' Council and Social Change in Rhode Island, 1951-1970," Rhode Island History 40(November 1981): 144-159.

Katherine Castles, "'Nice, Average Americans': Postwar Parents' Groups and the Defense of the Normal Family," in Steven Noll and James W. Trent Jr., eds., Mental Retardation in America: A Historical Reader (NYU Press 2004).

Kathleen W. Jones, "Education for Children with Mental Retardation: Parent Activism, Public Policy, and Family Ideology in the 1950s," in Steven Noll and James W. Trent Jr., eds., Mental Retardation in America: A Historical Reader (NYU Press 2004).