Half Changed World

The first thing to say about The Immortal Life of Henrietta Lacks by Rebecca Skloot is that it really is as good as the reviews say it is.  I put it on my library list when I first heard about it, but when I got it last week, I wasn’t sure I was really up for diving into a story about science and race.  But I was concerned if I didn’t start it right away, I wouldn’t finish it within the 3 weeks the library allows, and that I wouldn’t be able to renew it.  So I started reading it Friday evening… and finished less than 24 hours later.  I literally can’t think of the last nonfiction book that I read that way — it’s that good.

Henrietta Lacks developed cervical cancer in 1951, when she was just 30.  She lived in Baltimore, and so went for treatment at Johns Hopkins, which had a ward for black patients.  The doctors there removed her tumor and treated her with the best practice of the day — sewing radium packs into her cervix.  But the cancer recurred and spread rapidly to pretty much every organ in her body, and Lacks died.  But meanwhile, scientists at Hopkins had attempted to grow the cells from her tumor in culture — and discovered that unlike almost every other cells they had tried, these cells reproduced indefinitely.  The cell line was dubbed HeLa, and was freely shared with labs around the world, and has been critical to the biological sciences ever since.

Skloot carefully lays out multiple entwined stories around Henrietta Lacks and HeLa — what is known of her short life, how her children were affected by her early death, and again how they were affected years later when they learned about HeLa, and how Skloot came to win their trust, but also about the doctors who treated Lacks, the scientists who reproduced and shared her cells, the ways they were used, the development of modern medical ethical standards around informed consent, the history of abuse of black patients in the name of science, the discovery that most of the cell lines used in research had been contaminated by HeLa cells, and present day controversies over patenting genes and whether donors have any financial claim on products made from their tissues.  These multiple stories could easily have become too much, or totally confusing, but they don’t.

This story is fascinating in large part because the answers to the ethical questions are far from obvious.  There are some people in the book who were clearly wronged by scientists.  Henrietta’s oldest daughter had epilepsy, and was institutionalized, dying shortly after her mother.  Skloot goes with Henrietta’s younger daughter to that institution, and finds that she was almost certainly mistreated and experimented upon in ways that were harmful to her.   Scientists also injected HeLa cells into patients without informing them in order to see what would happen.  But Henrietta was not harmed by the cloning of her cells, and anyone who has benefited from a drug that has been tested in the past 50 years has benefited from the HeLa line.   The Lacks family has been very poor — and struggled to get health care at some times — and some people have gotten rich off of HeLa, but neither Hopkins nor the scientist who first reproduced the cells appears to be among them.  (Skloot has set up a foundation to benefit Henrietta Lacks’ descendents and you can also give directly to the family through their website.)  Medical ethics rules have gotten a lot stricter since 1951, but even today, it seems likely that something like this could well happen again — except that with more concern for patient privacy, it’s even less likely that the donor would ever know.

When N was born, I had the umbilical cord blood collected and donated to a public bank.  This means that it’s not reserved for our use, but in theory will be available to us if we ever need it and there’s any left.  (It’s not at clear to me that umbilical cord blood is actually useful, but it clearly has potential, so there didn’t seem to be any downside.)  It occurs to me that I have no idea what the conditions of my donation were — whether it’s only available for direct use by a patient, or if a researcher could apply for a portion of it.   I’d be happy to have it used in any way that would be helpful.

I’ve been reading a bunch of interesting takes on the question of whether Joe Stack (the guy who flew the plane into the IRS building in Texas) is a “terrorist” and whether the word has any meaning at all.

I think there’s a lot of truth in Glenn Greenwald’s argument that as actually used by the American media, the word has become racialized, and essentially means “a Muslim who fights against or even expresses hostility towards the United States, Israel and their allies.”   But I think the more interesting question is whether it is possible to set that definition aside and draw a line someplace that makes sense.

Personally, I don’t think there’s any question that the 9/11 perpetrators, Timothy McVeigh, the IRA bombers of the 1980s,  and the Beslan murderers all qualify as terrorists.

On the “just nuts” side of the fence, I’d clearly put Amy Bishop and the Columbine murderers.  In both cases, the attacks were aimed at people known to the killers, and were not politically motivated.

The government was pretty quick in the case of both Nidal Hassan (the Ft Hood murderer) and Joe Stack to reassure the public that these were “not terrorist acts,” by which I think they mean “were not linked to a larger network of terrorists.”  By contrast, Najibullah Zazi, who just pled guilty to conspiracy to use weapons of mass destruction in the New York City subways, is considered a terrorist, because he was recruited and trained by al-Qaida.  I’m not sure I buy that distinction — which would put McVeigh on the “not terrorist” side — but at least it makes some sense and isn’t purely racial.

I think I’m inclined to say if you’re killing people — especially civilians — you don’t know, and are politically motivated, I’m ok calling you a terrorist, even if you’re acting entirely alone.  That would make Stack and the Unabomber terrorists.  I don’t know enough about Hassan’s motivation or Bruce Ivins’ (the alleged anthrax killer) to say with any confidence which side they’re on.

That said, I sort of agree with Jill in thinking that some actions — flying an airplane into a building, bombing a public building or public transportation — are maybe inherently terrorist, regardless of your motivation or whether you’re part of a network.  But my examples (Beslan on one side, Columbine on the other) suggest that other things , eg. shooting up a bunch of kids at school — are not.

What do you think?  Does the distinction matter?

I usually don’t do book reviews of books that I read a long time ago, but since we’ve been talking about Paul Robeson, I though I’d make a plug for Martin Duberman’s wonderful biography of Robeson.  It’s a long book, but it illuminates a fascinating and complicated man, as well as what it meant to be a successful black man in pre-civil rights America  (he was born in 1898 and was the third African-American man ever to attend Rutgers), and the Red scare.

The anti-communist hysteria of the 50s certainly caught up many people who weren’t really communists, but Robeson wasn’t in that category.  He may or may not have ever been a formal member of the Community Party USA (he always denied it; Gus Hall claimed he was), but there’s no doubt that he was a communist sympathizer.  To his credit, he truly believed in the universal brotherhood of man; to his shame, as Dave noted, he continued to insist that Stalinist Russia was an exemplar of that ideal, even when confronted with evidence to the contrary.  Duberman doesn’t shy away from that failing in Robeson, but he makes a convincing argument for how a proud and idealistic man could avoid confronting a truth that would give aid and comfort to those who had persecuted him for years, and embarrass the people who had stood up for him.

If you didn’t listen to the song I posted last week, go back and listen.  His voice is awesome.  This is the CD of Robeson singing that I have.  It’s an eclectic album that doesn’t quite hold together, but shows off the range of his repertoire.  It has his version of Ol’ Man River, as well as the House I Live In, and Joe Hill.  It also has him singing Motherless Child, Ode to Joy (in German), a Yiddish folksong, a song from The Magic Flute, discussing how "hello" sounds the same in many languages, and reciting the final speech from Othello. 

Someone posted on my neighborhood listserve this morning, wondering "where are the cries for help for
the poor people of Iowa? Are they less deserving than the people of Louisiana?"  The question wasn’t from someone I know, and maybe I’m misjudging him, but my interpretation of the subtext was "all you people who were so dramatic about Katrina weren’t really worried about the people, but looking for a reason to beat up on Bush."

My impression is that the floods in the midwest have caused massive displacement, and overwhelming property loss, but that there’s been relatively little loss of life.  Kari Lyderson writes at Rooflines about the contrast between the disasters and suggests a few causes:

1. The local governments are far more functional.
2. Most people displaced in Iowa are staying with friends and family; in New Orleans, many of the affected had no social networks outside of the city.
3. Those from outside helping (FEMA, National Guard, volunteers)  have positive impressions of the people they are helping: "To put it bluntly, law enforcement and volunteers in Iowa were not
   afraid of or harboring deep-seated hatred toward the people they were
   trying to help."  I mentioned this idea to someone at work, and she commented that if Iowans break store windows, they’ll be seen as "getting needed supplies" not "looting."

That said, I do think it took a ridiculously long time for the East Coast media to figure out that this was a major story.  One of my colleagues is from Iowa, and she was stressing last week when the flooding started.  I hadn’t heard the news, so went online to look, and discovered that there wasn’t a single mention of the flooding on the Washington Post’s website at the time. 

Via Crunchy Granola, I found Boomerific’s postings about the flooding.

Some ways to help:

• Red Cross  — their disaster relief fund is empty and they’re borrowing to keep going.
• Union for Reform Judaism disaster relief.

I’ve quoted here before from the speech that Dr. King gave on the eve of his assassination.  It’s a stunning speech, made almost unbearable by the clarity of hindsight.  I’ve included pieces of it in my haggadah for Passover at times, and no one ever seems to manage to get through it without their voice breaking.  Thanks to the wonders of YouTube, you can watch some of it online. 

This 40th anniversary of King’s death has a particular resonance, because of the comparison in that final speech between him, and Moses, seeing the promised land, but not making it there himself.  The Israelites wandered in the desert for 40 years before they made it.  How long will we wander?

***

I was at a meeting last week where we were discussing Obama’s speech about race, and someone said that he thought there were echoes in it of Kennedy’s speech after King’s death.  I hadn’t heard it, so I went and found the video online.  Go watch it.  (Warning — this clip cuts to footage of Kennedy’s assassination.)

At dinner tonight, I asked D if he knew why we were celebrating Martin Luther King’s birthday.  He said that King was famous, and that he worked so that blacks and whites could both do things equally.  Fair enough for a first grader.

Last year, D’s class was almost entirely African-American, with one other white kid.  This year, at a different school, his classmates are more diverse, with a majority Hispanic, but a scattering of white, black, and Asian kids.  He considers almost all of his classmates his friends, with Pokemon the main unifying interest. When he draws a generic person, he reaches for the brown crayons.

But we’re not living in a non-racial utopia.  One day D came home sad because a classmate didn’t want to play with him, and he explained it as this boy only wanting to play with other kids with brown skins.  I didn’t know what to say. We’ve been trying to set up a playdate with another kid for months, but it hasn’t happened — I’m not sure whether it’s the language barrier, cultural issues, or just that family’s lack of interest. 

D’s invited about 8 of his classmates to his birthday party next week, and we haven’t heard back from most of them.  I’m afraid that my super-sensitive kid is going to be heartbroken if they don’t come.  And I’m concerned about what message he’s going to take away if it’s only white kids who wind up coming.

I don’t think it’s race per se that’s the barrier, but economic class and language may well be issues.  Some of the kids’ parents probably don’t own cars. Our house is only about half a mile from the bus stop, but the buses run very seldom on weekends.  Or non-fluent English speakers may feel awkward about calling us to RSVP.  We’re going to ask his teacher if we’re allowed to bring in cupcakes so he can celebrate with his friends in any case, but I’m still worried.  I’m probably overdoing it with the party preparations (a papermache pokeball pinata, a jigsaw puzzle with a secret message) to compensate.

Blogging while I watch the election results come in from New Hampshire.  Clinton’s still leading Obama with a bit under 1/3 of the results in so far.  If she wins, it will be really interesting to see the analyses of why the polling over the last few days was so far off.

The Steinem piece on Hillary has been getting a lot of play today.  I think she’s completely right that Hillary has been the object of a great deal of sexism — from the constant refrain that she’s "shrill" and "strident" to the obsession with her appearance and the damned if you do, damned if you don’t coverage of her emotions.

That said, I do think the campaign has highlighted the degree to which
sexism continues to permeate the environment, at a time when overt
racism has become clearly unacceptable, at least in high-level
politics.  Obama’s been the subject of some nasty anti-Muslim comments
(even though he’s Christian), but other than the people who keep
calling him "articulate",* there’s been very little racism in the
campaign so far.  (But I still think racism probably does more to hold
people back on the US overall than sexism.  Some other day, I need to
blog about the Pew findings on race, gender and intergenerational
mobility)

[CNN just said that their exit polling is showing more support for Clinton from women in NH than they saw in IA.  If so, I think that may well be driven by the blatant sexism of the news coverage of the past few days — from the headlines, I thought that she had burst into tears and been unable to continue, rather than having a hitch in her voice.]

But I think Steinem’s overstating the degree to which sexism is driving the results so far, as opposed to people’s real enthusiasm for Obama.  Yes, it’s improbable that a woman with Obama’s bio could be a serious candidate for president. But it’s also totally improbably that he’s a serious candidate for president.  And it’s not fair, but that’s part of his appeal.

I also think that when Steinem includes "powerful fathers" along with "sex, race, money.. and paper degrees" in the things that shouldn’t be driving our choices, it’s more than a bit disingenuous for her not to include "famous husbands" in the litany.

*  "Articulate" is a compliment when you’re talking about a teenager, or someone you’re interviewing for their first job.  When applied to an adult who has been elected to political office, it’s either damning with faint praise or code for "he doesn’t sound black."

[AP and CNN are calling New Hampshire for Clinton.  Judging by my disappointment, I’m officially off the fence.]

Jody and Phantom Scribbler and chicago mama all have thoughtful posts up about the NYTimes article about redshirting kindergarteners.

D’s birthday is in January, so he’s in the middle of his class age-wise, one of the smallest kids, one of the most advanced academically.  One of his good friends, with a July birthday, is doing "junior kindergarten" this year — but he has some sensory issues, and I know his teacher were worried about his ability to stay on task.  It’s not clear how much easier he’s going to find it next year, though.  N’s birthday is in October, so he’ll be nearly 6 before he starts Kindergarten.  If I didn’t know that other parents were likely to be holding their summer-birthday kids back a year, I might be in the school office, arguing to let him start a year early.   I was 4 when I started school (November birthday, December cutoff) and didn’t suffer.

I think the points the author made about the class issues are real ones — redshirting kindergarteners is definitely an upper-middle class phenomenon — but am unconvinced that it matters in the scheme of class inequities in education.  For one thing, I’m doubtful that many poor kids are going to be sitting in the same classrooms as those redshirted kids.  EdWeek has a new tool out that lets you generate reports for any school district in the country on graduation rates and school segregation levels. I took a look at the one for Alexandria and was shocked to see that its school system scores a .78 (on a 0 to 1 scale) for racial segregation and a .52 for socioeconomic segregation.  Those numbers are far higher than average for either Virginia or the country as a whole, but what makes them really shocking is that all the segregation is in the elementary schools — there’s only one high school (TC Williams, of Remember the Titans fame) and two middle schools.

And we’re not talking separate but equal either.  My friend who has her kindergartener in one of the predominantly white, middle-class, active PTA schools has been told that her son has been identified as gifted and talented (even though the pull out activities don’t start until 3rd grade) and invited to come in for a meeting to discuss the curriculum.  I’m quite confident that if any such process were happening at D’s school, we’d have heard about it.  We haven’t.

A year ago, in my post about the decision to send D to this school, I wrote " What I worry about is whether they’ll learn that school is something to be endured."  I do think this fear has somewhat come true.  D’s bored a fair amount of the time at school — his biggest complaint is that it takes up too much of his day.  And the whole class often loses privileges when some kids misbehave.  D’s counting days to the end of school.  And frankly, I am too.

D came home from school last week singing various songs about Martin Luther King.  Very cute.  The school also showed his class a movie that apparently involved time travel and how the world would be different if Dr. King hadn’t lived.  In particular, D was quite concerned that if it weren’t for Dr. King, black kids and white kids couldn’t go to school together and he wouldn’t have hardly any friends!

I didn’t want to spoil D’s enthusiasm, but two things about that claim disturb me:

First, I’m wondering if educators show the same film in inner-city classrooms that are 100% minority.  As Jonathan Kozol points out, if you visit any school in America that is named after Dr.  King or Rosa Parks, the chances are that it will be just as segregated as any school before Brown vs. Board of Education.

Second, with all due respect to Dr. King, I think it does a disservice to the civil rights movement to suggest that it all hung on one man.  The  path might well have been different — and quite possibly more violent — but I find it hard to imagine that we’d still have legal segregation in the US even if Dr. King had never lived.

I’m guessing I may have an annual series of posts for as long as I continue blogging, quibbling about how the schools talk about Dr. King.  Last year’s edition is here.

I picked up this week’s book, American Born Chinese, by Gene Luen Yang, after hearing that it was the first graphic novel to be nominated for the National Book Award, for Best Book for Young Adults.  I probably would have liked it better if this hadn’t raised my expectations for it.

Even though there are three different plot lines, each story is relatively straightfoward, so it’s easy to keep everything straight.  The graphics are attractive, but not especially sophisticated — "cartoony" is the word that comes to mind.  The book has a pretty heavy handed, if well-intentioned, message: Be true to yourself; don’t try to be something that you’re not. 

Part of my disappointment with the book is that it felt like a bit of a period piece, set in the 80s or 90s, rather than today.  Will the target audience of today’s teens even get the references to Sixteen Candles?  My guess is not.