Category Archives: human rights

Headed to Haiti, More Bridges to Build

This year began with a pair of earthquakes that has riveted and upset many. But what most upset former banker and current humanitarian philanthropist Sara Henderson was that the panic and devastation streaming across TV screens was so familiar.

“I felt like I was seeing something I’d seen five years before,” Sara Henderson told me last week.

Henderson, founder and CEO of the Building Bridges to the Future Foundation, said the early scenes from Haiti felt too much like what she had seen five years earlier immediately after the tsunami in Aceh, Indonesia. “People have forgotten that in Aceh it started with a 9.8 earthquake,” Henderson said. “By the time the tsunami hit, massive amounts of infrastructure, governmental structures, many buildings had been leveled.”

As similar stresses tore apart government buildings in Port-au-Prince, she said, the amount of confusion among the media and competing non-governmental organizations also felt sadly familiar. “It got me wondering — have we learned nothing?”

Henderson also felt the same impulse that millions of others did — to try to help. But in her case, she actually had an idea of how to do it, after creating the Building Bridges to the Future Foundation and becoming what the New York Times recently called “one of Aceh’s longest-serving aid workers.”

Now, Henderson’s headed to Haiti at the invitation of Oxfam America and other NGOs [non-governmental organizations] familiar with her work in Aceh. While those peers have offered to get her started, said Henderson, she has no idea what she’ll find. And starting in late March, she has agreed to blog from Haiti for Women’s Voices for Change. (To read my first article on Henderson and her foundation, click here.)

Henderson also has no way of knowing how much of the model she developed in Aceh will be useful in Haiti. Then again, in 2004, when she first began the simple task of rebuilding homes wiped out in Aceh, she didn’t even yet know what a development model was.

“When I was in banking I gave at the office,” she told WVFC. “This was my first venture into anything like this.” But Henderson’s 25-year career international banking had also given her a keen instinct for what was necessary for a project to actually work – including the project of helping a society recover simultaneously from a natural disaster and a 25-year civil war.

Five years later, Henderson is “founder, president, and sometimes barn builder, field clearer and goat delivery girl,” as she describes herself, for an international agency that focuses on getting some of Southeast Asia’s poorest villagers the tools they need for self-sufficiency. Building Bridges, also known as Yayasan Jembatan Masa Depan (JMD), was from the beginning an Indonesian organization, too, grounded in the friends who first brought Henderson to Aceh after the tsunami, the villagers who welcomed her into their lives, and the educators, social workers, and community leaders who deliver its programs.

Early on, said Henderson, “most NGOs had withdrawn from Aceh,” especially before the August 2005 ceasefire in the area’s civil war. Even after that, political and religious divisions complicated nearly every interaction between local villagers, many of whom had been in the insurgency, and the myriad international agencies flooding in to help. But from the beginning, Henderson–who’d begun her work in Aceh when wartime conditions still required her to pass through 32 military checkpoints–has worked on behalf of anyone who was poor and desperate enough to ask for her help in rebuilding their homes and their lives.

Thus also was born one 0f BBF’s first principles: Not taking sides. “We don’t care what side you were on,” says Henderson, “if you meet our criteria for help and you will do the work.” So the families, individuals, and community leaders participating in BBF programs come from both sides of the pre-2005 conflict, and from the diverse schools of the Islam practiced throughout the islands.

Another first principle for Henderson: When you start something, don’t be afraid to veer into something completely different. In the year spent building 41 houses in Rumpit, Henderson saw that the women she was helping were illiterate. From that grew an overall commitment to ensuring that women and girls receive the education they need. Now, the foundation’s explicit mission is trifold: to create village-level small businesses in livestock and farming; tailored education programs for women, men and children; and innovative livelihood and skills-training programs.

Each of the three aspects, Henderson discovered, is essential for the others to succeed.

  • BBF’s Dairy Goat Program, while inspired by the pioneering work of HEIFER international, is more interested in making sure that goat farming in the villages can succeed. “I saw these NGOs come in, and saw the goats being sold,” Henderson told WVFC— describing something quite contrary to the spirit of such programs, which are about helping poor villagers sell milk and dairy products. “It’s not always a sustainable business model,” Henderson added. Rather than such direct giving, BBF’s program helps set up cooperatives and brings in experts to help. One early result: “One of our partners set up one of the first professional dairies in Aceh.”
  • The organization’s education program now works with the Ministry of Education developing and providing educational materials to schools. “They use something called the Packet ABC system,” Henderson said. “Schools get a packet – if a student passes what’s in it, then they graduate to the next level. If we’re teaching third grade, for example, we’ll have materials and tutors appropriate to that packet.” BBF also runs a few of its own schools, and offers scholarships for girls who otherwise wouldn’t be able to complete school.
  • Perhaps unsurprisingly for a project founded by a banker, there are many specific programs for financial literacy and education in business management. “We’re helping these businesses get started — a dairy is a business, after all!”

Henderson is going to Haiti with the same friend who went with her to Aceh. She’s nervous but hopeful. “I know that Haiti and Aceh are very different… What happened in Aceh is more like what just happened in Chile, with destruction of the coast,” she said. She considered making the trip to Chile instead, but “everyone kept telling me that in Haiti they need us so much more!”

From the beginning, Henderson’s foundation has tried to work in areas neglected by other NGOs — even when civil war was making more powerful organizations fearful. And that’s the approach she’ll take in Haiti, she said. “I know we won’t be in the capital, with those thousands of aid workers,” she said. “I need to go out into the villages you don’t see on the news.”

When we asked her to file short briefs from Haiti for WVFC, Henderson was delighted. She hopes to inspire other women over 50, though she knows her own reinvention is a little singular: “There’s so much we can do,” she said. “And lots of it isn’t far from home.”

First published at Women’s Voices for Change.

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Women over 50: Health insurance might as well be the yellow brick road.

Many of us winced last week at headlines that read “Women’s Mid-Life Crisis – No Health Insurance.” But who was really surprised?

We learned last fall, via the Kaiser Foundation, that older women — many of whom had private insurance — spent 17 percent of total income on out-of-pocket health care expenses, a figure that escalates as we age.

It didn’t take President Obama’s soulful reference at his health summit to “folks making $40,000 a year,” or commercials about families fallen on hard times, to remind us that we as older women face a unique set of challenges when it comes to paying for our health care. Or that there were precious few women at the table during that meeting, as noted in The Daily Beast this week by Dan Rather: House Speaker Nancy Pelosi, Secretary of Health and Human Services Kathleen Sebelius, Sen. Patty Murray of Washington, New York Rep. Louise Slaughter, Rep. Marsha Blackburn and Nancy-Ann DeParle, the White House health-care adviser. “Six out of 42. That’s it?” Rather asked. As should we all.

Most of the women noted above have already declared in public statements what we also know: that it’s particularly brutal out there for women 45-64.They’d all probably already seen the report behind the headline “Mid-Life Crisis,” which examined data from UCLA’s 2007 California Health Interview Survey.

The UCLA study gave heft to its cruelly apt title with new evidence, including the finding that women between the ages of 50 and 64 were twice as likely to lack health insurance as our male peers. We’re also more likely to have health problems, which presents a chicken-and-egg problem, since insurance options for such purchasers are often limited.

Study authors Roberta Wyn and Erin Peckham noted that “Women ages 50-64 are more likely than younger women (ages 18-49) to report they are in fair or poor health and have limitations in their daily activity due to a health problem.” One-quarter reported having a condition that “limits their basic physical activities, such as walking, climbing stairs, reaching, lifting or carrying.”

But they also found that one-third of low-income women, one-quarter of single, and one-fifth of widowed women over 50 were without insurance for at least a full year — percentages that may have risen sharply since the economic crash that followed the 2007 survey. This may be a matter of life and death, or at least poor health; uninsured women of all income levels reported to UCLA that they had delayed doctor visits and important medical screenings due to cost.

The only silver lining in this particular cloud? That people have been working hard to solve the problem, from the competing health care proposals to innovative programs by hospitals and communities. One bright light for California, just getting started when the above survey was conducted, is the singular Healthy San Francisco program, which offers top-quality care to San Francisco’s uninsured with fees on a sliding scale. An article in San Francisco Magazine about HSF features a middle-class Web designer, who as a freelancer can’t swing the insurance but is happy to pay his fair share; it also mentions a 49-year-old woman named Sharon, a library assistant with hydrocephalus, who was just treated for thyroid cancer. She credits HSF with saving her life: looking at the UCLA survey, perhaps what’s most relevant is the fact that she saw good doctors early, before it became incurable cancer— something that lack of insurance might have otherwise denied her.

I wish Sharon had been at that Washington table last week. I sort of wish I had been, too, so I could tell them that I’ve lived with multiple sclerosis for 26 years and that my own insurance, which I get through a former employer under COBRA, is about to run out – and insurance brokers laugh when I ask what a private policy would cost. I’ve been saying since December that if nothing is done I’m not sure what I’ll do. The UCLA report does not mention “pre-existing conditions,” but maybe it doesn’t need to.

The program that helped Sharon is among many other “pilots,” such as Minnesota’s Menninger Clinic, that experts are looking to for good ideas. I hope that the thousands of passionate and creative people working on this issue can shake off the politics and get this done, so that fear doesn’t have to become our permanent pre-existing condition.

This post originally appeared at Women’s Voices for Change.


Henrietta Lacks’ grandkids: “How can you judge the 1950s by the ethics of today?”

When Rebecca Skloot walked into the Kimmel Cancer Center in Philadelphia last week to talk about The Immortal Life of Henrietta Lacks, she was riding a wave of positive reviews for the book she had been working on for nearly half her life. The Boston Globe had called it “a well-written, carefully researched, complex saga of medical research, bioethics, and race in America.” Salon termed it “a heroic work of cultural and medical journalism,” and the New York Times thought it “a thorny and provocative book about cancer, racism, scientific ethics and crippling poverty [that] floods over you like a narrative dam break.”

At the Kimmel Cancer Center (part of Thomas Jefferson University), the crowd was made up of scientists and physicians, many of whom knew Henrietta Lacks only as HeLa, for the cell line named after her unusual, fast-growing cells. Over the years, HeLa cells have been used for cancer research, to test the polio vaccine, unlock the secrets of DNA transcription, and thousands of other medical projects.

Among the crowd was Dr. Leonard Freedman, dean of research at Thomas Jefferson, whose lab invented a new tool for DNA research using HeLa. “You know, I used to do a lot of science with these cell lines,” Freedman said to this reporter just before the lecture. But the book was a revelation: “We knew the cells came from some woman, but we even had her name wrong. And we certainly didn’t know any of what’s in the book.”

Dr. Edith P. Mitchell.

The same was true for Dr. Edith P. Mitchell, a clinical professor of medicine and program leader in the school’s Gastrointestinal Oncology program (and a general with the Missouri National Guard. “My first exposure to HeLa cells occurred when I was a young student, and was told not to contaminate anything,” Mitchell explained, “because, and I quote, ‘Those HeLa cells will grow all over the place.’”

All of this, Mitchell added, made her eager to secure Skloot as the center’s lecturer for Black History Month. Some might find this a paradoxical choice, seeing Henrietta Lacks’s story as a prime example of the medical community’s injustices to African-Americans. (For more on this history, see Medical Apartheid by Harriet Washington, who helped advise Skloot on her book.) Mitchell had a different view: “What does all this have to do with Black History Month?” she asked the crowd. “I say it’s connected to our history—by which I mean,” she said, glancing pointedly at the mostly white faces, “the history of the human race.”

Skloot asked the audience of 200: “How many people in the room knew about Helen Lane, before today?” About 100 hands went up. “And how many have worked with HeLa cells?” Two dozen raised their hands.

Then Skloot began to trace the story of a young mother of five who came to a clinic at Johns Hopkins, in 1951 “the only hospital in Baltimore that would see black patients,” after discovering a lump on her cervix.

Back then, “informed consent” laws didn’t exist, she added. The only consent needed was the patient’s signature on a form granting Johns Hopkins permission “to perform any operative procedures that they may deem necessary in the surgical treatment of Henrietta Lacks.”

It was immediately clear that Lacks had a full-blown tumor. She was given the prescribed treatment of the time, a course of radiation. But her diagnostic lab sample soon took on a life of its own.

That specimen, Skloot explained, was sent somewhere having nothing to do with treatment: to cell biologist George Gey, inventor of the “roller drum” used in labs worldwide, who was in the process of gathering all the cervical-cancer cells he could find.

“Gey thought he could isolate cells that had characteristics that were only cancer,” said Skloot. “So he collected them, but until he got Henrietta’s, the cells just always died. Hers didn’t.”

In fact, they doubled every four hours. The manically reproducing cells behaved the same way in Lacks’s body: she died eight months after entering the clinic. But her cells now had their own rooms at Johns Hopkins, and Gey was beginning to publish the fact that he’d found and perfected the line he called HeLa. Soon every scientist wanted his own supply, and eventually facilities were built to mass-produce HeLa cells and ship them around the world.

“I first heard about the HeLa cells when I was 16, at community college taking a class for high school credit,” said Skloot. “My teacher said what all teachers said in those days: ‘There are these cells, there was this woman, her name was Henrietta Lacks, and she was black.’ And I was like, That’s it? That’s all we know? He told me to go find out some more and write an extra-credit paper about it,” she laughed. “About a year ago I sent him my manuscript for this book: ‘Hi, remember that paper I owe you?’”

It took Skloot nearly two years to gain the confidence of Henrietta’s daughter Deborah Lacks- Pullum, whose journey to understanding is the core of Skloot’s book.

“I was just the next in a line of white people who wanted something,” Skloot said, adding that she gained Lacks-Pullum’s trust only after she offered to include her on the quest, taking her on lab visits and field research. During the years that HeLa had become increasingly renowned—the first cells to go into space, the first whose genes were mapped—the family, back in Baltimore and Virginia, had been largely unaware that Henrietta’s cells had even survived.

Asked what the family thought of her book, Skloot said that “there was a lot of pain associated with the story to them, and there were certain parts they avoided—like accounts of her death. But I think it was also sort of cathartic.” Deborah Lacks-Pullum remained deeply traumatized for many years. After learning about the HeLa cells and the research it had facilitated, said Skloot, “she believed her mother’s soul was in these cells. She wondered, ‘How can my mother rest in peace, if you’re shooting her cells to the moon?’”

Graphic from WIRED Magazine shows the global reach of the HeLa cells.

Other members of the family were, and are, passionately angry. “Her brothers became very angry when they knew the cells were being bought and sold,” said Skloot. She pointed out that any researcher in the hall that day could go online and buy a vial of HeLa for about $250, with other HeLa-derived products costing up to $10,000. Meanwhile, many members of the Lacks family are without health insurance. “They keep saying, ‘If our mother is so important, why can’t I get access to health care?’”

Skloot cautioned that the facts don’t support the media hype that something illegal has been done. Over the decades, she said, stories about the Lackses ran like much of the negative coverage of her book: Woman’s cells stolen, millions made, family still poor. But there’s no evidence of actual theft in a country where consent laws were hazy, she said—only a built-in structural injustice toward people without power.

“George Gey has been held up for decades as this guy who stole her cells, maybe didn’t treat her right,” said Skloot. On the other hand, some scientists have objected to the fact that the book raises ethical issues at all. “One stood up and told me it was irresponsible to tell the story, that this is going to give people the idea that they own their cells.” But Skloot refuses to see the story in cut-and-dried terms. “This has been held up as another Tuskegee,” she said, referring to the notorious forty-year syphilis study that used sharecroppers as its subjects, “and it’s just not.”

According to Skloot, even Lacks’s grandchildren don’t think so. Most of them are in their thirties, she said, “the first generation to have much schooling—one granddaughter is finishing up a masters’ in psychology. And they look at this whole thing from a very different perspective from their parents, saying things like ‘You can’t judge the 1950s from the ethics of today.’ They’re very proud to have come from her.” When the family came up to New York for a book-signing like this one, she said, “the room sort of erupted in cheers. All the scientists were saying to them, ‘This is what I did with the cells, this is what’s important,’ and asking them for autographs.”

With Roland Pattillo of Morehouse College, Skloot has set up the Henrietta Lacks Foundation to benefit the Lacks family. She spoke of one scientist who pledged to donate to the foundation: “‘A dollar every time I process a batch of these cells,’ he said. So I got a dollar and a dollar, and then he realized, ‘Whoa, this is going to add up!’”

Another potential source of compensation for the Lackses is a movie or TV adaptation, which would require producers to purchase not only rights from Skloot but ‘life rights’ from the family. The book has already sparked quite a bit of interest from studios, she said. Like Henrietta Lacks’s immortal cells, her story—complex, controversial, and needing to be told—is likely to be with us for some time to come.

First posted at Women’s Voices For Change.

Howard Zinn

One of the things that makes me personally sad about Zinn leaving us when he did is that I’d hoped, when Ain’t Marchin’ was published, to introduce him to Garett Reppenhagen (left), president of Veterans Green Jobs and former president of Iraq Veterans Against the War. The latter had told me, when I interviewed him two years ago, that Zinn’s People’s History had been a catalyst for him. “I walked into this cool bookstore in Colorado Springs,” Reppenhagen told me, “and I said I’m a high school dropout and probably going to Iraq. What do I need to know?” In addition to recommending John Perkin’s Confessions of an Economic Hit Man (also an excellent choice), the bookstore clerk insisted he buy the Zinn. A sniper who was at that moment stationed in Bosnia, it took some time, he said: but afterwards felt changed forever.

Now it turns out that Zinn wouldn’t have been surprised to hear that, since another young vet from the previous Iraq war, Jeff Paterson, also credits him. Jeff, the tireless and inhumanly tall coordinator of Courage to Resist, tells about discovering Zinn in Asia in 1989:

At the time, I was a 20-year-old Marine artillery controller becoming disillusioned with what I was seeing stationed in Okinawa, the Philippines, and Korea. Reading “People’s History” was certainly an unknowing step I took towards later refusing to fight in Iraq in August 1990. It enabled me to see my individual actions as a part of something much larger—yes, even larger than the Marine Corps.Within a matter of weeks in late 1990 and early 1991, nearly a hundred Soldiers, Marines, Airmen, and Sailors pledged to refuse to fight—most eventually did time in stockades and brigs. Twice as many service members publicly spoke out against the Gulf War at anti-war protests and rallies—sometimes to dozens, sometimes to 200,000 people. However, unless you were there, or have read a recent edition of “People’s History”, you wouldn’t know any of that ever happened.

Maybe the book will make a small contribution toward lifting that national amnesia, at least a little. Meanwhile, see Jeff below with Michael Wong, a former Army medic who deserted after he learned about My Lai, spent years in Canada and then worked in exactly my job in San Francisco. Watching them interact makes me feel a little unstuck in time.

(Cross-posted, of course, at I Ain’t Marching Anymore.)

Some news and a promise

I almost literally crawled under a rock toward the end of the year, in an effort to finally get this book completed. I can now report honestly that it’s almost there. (For a cheat sheet on its ultimate shape, check out my draft introduction at the book’s own site.)

Some  bits and pieces from around here – some more personal than usual:

  • With the book’s delivery in sight (promises, promises, I know, but….), I’m now blogging daily (ditto) at the Ain’t Marching site. Subscribe to its feed if you can so you don’t miss out. Today, for example, I comment on two medical-whistleblower stories, and on the intrepid reporters who’ve been crucial in exposing them.
  • Speaking of intrepid reporters, the unparalleled Jina Moore keeps breaking new ground, and rolling out new features from her work in Liberia (a project of the Pulitzer Center on Crisis Reporting).  Check it all out at her new site: this week she has a LONG, smart piece in the Christian Science Monitor Sunday mag, but I’m also intrigued by her older, sly piece on the guy who stole all the lawbooks, citing intellectual-property laws. (He needs some African Stephen James Joyce to give him a spanking.)
  • The web magazine I edit, Women’s Voices for Change, just gave me a taste of what it’s like to be in the magazine world: huge changes, a few layoffs, and a hot new editorial director who’s promised to make it famous. I’ll keep you posted as things proceed.
  • Meanwhile, I’m waiting to see if these folks find my work interesting enough to invite me in and give me hell for a few years. Maybe I won’t have to write more than two books that took Ph.D,-level work without that degree to show for it.

Why I’ll be the First Amendment this Halloween

Illinois prosecutors must be getting really desperate. Their own governor has already declared a moratorium on executions, after all. Bur targeting journalism students is really beyond the pale.

First page of the Bill of Rights, the first of which is?

First page of the Bill of Rights, the first of which is?NYT via Raw Story: "Lawyers in the Cook County state’s attorney’s office say that in their quest for justice in the old case, they need every pertinent piece of information about the students’ three-year investigation into Anthony McKinney, who was convicted of fatally shooting a security guard in 1978. Mr. McKinney’s conviction is being reviewed by a judge.

Among the issues the prosecutors need to understand better, a spokeswoman said, is whether students believed they would receive better grades if witnesses they interviewed provided evidence to exonerate Mr. McKinney.”

RawStory adds:

The suggestion that students were encouraged to find evidence of wrongful prosecution even if there were none has raised alarms among some legal experts, who wonder whether Cook County prosecutors may be trying to discredit the project that has caused embarrassment for numerous prosecutors over the past decade.

“They’re either trying to undermine the investigation, or they’re trying to undermine the entire project,” Don Craven, executive director of the Illinois Press Association, told the press last week.

That settles my Halloween costume. I’m wearing tha judge’s robe I used to impersonate a dead Habeas Corpus last year: this year, it’ll be a bleeding First Amendment.

Yeah, I’d call it “loyal opposition”

leyte hospitalGuernica Magazine did, anyway. Go look — some of it may look familiar if you’ve been there before, but if you keep reading you might be surprised. (Left is one of the images they didn’t choose.)

And on my shiny new Ain’t Marching blog, I talk a little about letters it has already prompted from families of soldiers. I hope they’re not the last.