Category Archives: illness

the iPad: friend of the disabled as well as the Appleaddict

It’s now been nearly a week since I–and oh, about 300,000 others–became early adopters of Apple’s new tablet computer, the somewhat unfortunately named iPad. (I still wonder if any women were in the room when they decided on the name.)

You’ve probably heard more about it than you ever wanted to, even if you own one: in this one week alone, we’ve had videos of two-year-olds playing on the thing, articles like “The iPad is a gift to readers” (Salon) and “The 9 Worst Things About the iPad” (Huffington Post). So why am I writing yet another one?

More centrally: why did I, a freelance writer and editor with a super-limited budget, line up at the Apple Store on Saturday with all the hardcore Mac fanboys — who had, like me, “pre-ordered” the device?

Partly because the minute I heard about it, it felt to me not like a luxury item but a near-necessity.

Full disclosure: I’ve been a charter member of the Mac cult for just about 20 years, and am fully aware that it means I have spent more for computers than I should have. I am also one of those “laptop people,” not having used a desktop computer since about 1995. Limits on my vision , dexterity and agility–first from illness, then from age as well–have kept me keenly interested in tools that let me focus on my work and not the computer’s. And as a media professional, I’ve been keenly aware of the newer media spaces, not just “Internet-instead of newspapers,” but phones, game consoles, and social media.

When the iPhone came out, I was in the market for a new laptop and thought of buying the iPhone instead, since it’s a powerful computer in its own right. That fancy passed, but as prices came down I became a proud owner of an iPod Touch, and learned to love both its easy access to work (email, editing blog posts like this one) and its quick windows to the rest of the ‘net. (I swear, for example, that I read a lot more of the New York Times on that tiny screen than I ever did in print.)

The problem with the Touch? Remember the vision and dexterity problems I mentioned above? Even when I increase font sizes, it has felt severely limiting—especially given the admittedly beguiling multitouch interface, where you physically turn pages and place Scrabble tiles. I joke about it, have called it all occupational therapy. But when I first started hearing about the iPad, and heard it critiqued as “just a big iPod Touch,” I clapped my hands. You made me a big one?

And when I learned about the keyboard dock that could make typing on the thing a bit easier, I knew it might even be my next laptop. Sort of.

When I got in line at my local Apple Store last Saturday, I was completely convinced the line would be full of women like me, whose eyes are beginning to go and whose multitasking lives demanded a tool both pleasurable and with fewer demands on the body.

Of course, I was wrong: it seemed, at least at first glance, that only men between 25 and 40 were really itching to get their hands on the newest Apple media device. (Or else–and this was perhaps more likely–women like me were far too busy to deal with that wait-in-line thing and just ordered it for delivery.)

And yes, so far it’s a mixed blessing. Though still a quarter the weight of my MacBook, the thing is far heavier than you expect, being crammed with software and a honking huge battery. Programs whisper and quit on occasion. And that keyboard dock isn’t ready yet, limiting the amount of time I actually write on it (though I wrote about half of this post that way). But I’m already loving the reading tools (hello, Moby Dick and countless academic articles for the book I’m writing). And the rather excellent speakers mean that while I’m doing more major writing at home, I have a very good soundtrack. (It’s a book! No, it’s a newspaper! No, it’s a…..boom box?)

I’ll keep you posted on how it goes. It’s way too early to know if I’ll end up regretting my decision to buy it so soon. I’ll check in as the year proceeds, as newer and even cooler and much cheaper products come out from Apple and its rivals.

In the meantime, I’m becoming a decent Scrabble player. And maybe I can get Stephen Colbert to give me his recipe for iPad salsa.

Originally posted at Women’s Voices for Change.

Advertisements

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.

” ‘Did you kill anybody?’ The answer we were told to write was no”

coffee_strong_logoI’ll write more this weekend about the situation at Fort Lewis, which should concern us all and has already got the attention of Amnesty International. But looking at GI Voice, the newsletter of the Fort Lewis GI coffeehouse Coffee Strong, I was gobsmacked by the following cri de coeur from a young Marine.

The writer, Allen Huck, knows exactly what’s going on. His note speaks to everything we’ve come to understand about soldiers, and these wars. I reprinted in full in case someone who reads this can help. (Feel free to contact Allen directly via Coffee Strong.)

It was “Marine Corps Policy”, I guess. Before leaving Kuwait, we were handed out forms to fill out. Awful things…Did you see a dead body? Did you kill anyone? Did you participate in any sort of war crimes? Ridiculous questions. Especially, since we were never really informed of what exactly war crimes were. Maybe I did. Those thoughts continue to haunt my daily life, and my dreams.

On our return to Kuwait, we were given strict instructions on how we were to fill out these forms.

“Did you see a dead body?” – The guided answer was no.
”Did you kill anyone?” – The answer was also no.
”Do you feel you need immediate help and/or counseling?” – Absolutely not.

The questions went on. And of course, the answers were almost always “no.”

Perhaps this is the reason that PTSD is so rampant as a result of this conflict. Had we been given the help we so sorely needed, perhaps the homeless rates, drug use, domestic violence, and completely shattered lives would not be so rampant. Maybe not, but it sure couldn’t have done additional harm.

When I returned from Iraq, I was forced to fill out one of these questionnaires. I told the truth, and as a result, it disappeared. When I returned home, I went to my commend, and asked for mental health counseling. But in the Marine Corps, requests for mental health were simply not asked for. And so it was denied. As a result of that, I was separated from the Marine Corps indefinitely. I was ostracized by nearly everyone in my unit as “crazy”, which was the most horrible stigma one could be given. I was immediately kicked off base, my ID card was confiscated, along with my base vehicle stickers.

Essentially, I was banned from the Marines for requesting help.

Later on, I received phone calls stating that I was UA (the Marine Corps’ AWOL), and MP’s came to my house to take me into custody. Just about three or four months ago, I received a call that said I was reactivated, and was on the roster to be re-deployed.

My unit was 4th LSB H&S Co. Located at Ft. Lewis.
Their Address is: Fort Lewis
H&S Co(-)4th LSB
Bldg 9690, Box 339500
Fort Lewis, WA 98433
Their Phone is: 253-967-2477

Any help would be greatly appreciated, as they have now refused to take my phone calls, and will not return my letters. My name is: Allen Huck.

To anyone who is willing to help in calling, writing, or anything of the sort, I would appreciate it. This is happening to other good soldiers, and we cannot allow this behavior to continue.

of time warps, and beside-the-point ANSWERs to worlds that can wait

Like the guy in the show above, I can’t believe it: I’m finally out of 1973. Unlike LBJ, I got  out of Vietnam, sort of. (I ended up with a 60,000-word chapter, in a book  that’s only supposed to be 110.000 words total!) I can almost say that I’m in the home stretch on this book, and am starting to frame its end – including scenes I witnessed personally (such as Ron Kovic confronting Colin Powell in 1995, when many thought the latter should be President). Meanwhile, the very lateness of the hour means I’m seeing another phase of the story take shape, as the Afghan war becomes the topic of the hour.The voices of vets like James Gilligan, who  tunneled through Afghanistan before going to Iraq, suddenly seem more urgent to hear.

But first, a little rant, about something that’s none of my business.

The months sunk into the “Vietnam years” made me feel more strongly than ever about trends I’m seeing in some of these newer veterans’ groups — stuff I keep TRYING, in good journalistic fashion, to shut my mouth about so that I can just watch it happen in real time.  It’s about the perpetual dance between dissenting veterans and groups of the sectarian left, for whom the latter are sort of a dream date.

When one young vet blithely proclaimed I could interview him at an event sponsored by World Can’t Wait, I instinctively refused, having grown up avoiding WCW’s sponsor at demonstrations in NY and Washington. I wrote a piece about WCW’s Maoist doppelganger, equally “militant” and equally cloaked in multiple spinoff organizations. Both pour a lot of money and support toward whatever young veterans they can find, support that has likely felt essential and important when the wider world is trying to ignore the wars. But the effect, throughout history, has not always been…. productive.

drillsgtI don’t want to go after those two groups in particular; and I can’t claim to be against military-civilian alliances or the need to look deeply at the power structures that sustain these wars. But witness the collapse of Vietnam Veterans Against the War in 1975, as narrated by  the late Steve Hassna. I met Drill Sgt, Hassna in the 1990s, and I trust his description of what he  called “The Split”:

A debate started in the organization in mid `72 about the future and what to do when the war was over. By this time everyone knew that, in fact, the war was going to end soon, just not sure when. One train of thought was we “struggle”, (that’s a leftist term, for “fight the good fight”) to see the war end. Then decide what we were all about. The other was, “We need to build an organization for the revolution, be the vangaurd, and all that other crap. Continue the fight against the capitalistic power structure and embrace a Marxist- Leninist analysis for a people’s revolution, blah, blah, blah, blah, blah!!

This sort of thinking really gave most of the members in VVAW a headache, and many left in disgust. This type of thought train was coming from VVAW members and non-veterans working in the organization who had adopted that Marxist analysis. The one thing to remember is that these people were coming into VVAW to push their special agenda. They were not there to stop the war, they were there to advance their political thought. Everything from the R.U.(Revolutionary Union),R.S.B (Revolutionary Student Brigade),Venceremos, October League, S.W.P.(Sociallist Workers’ Party), CPUSA (Communist Party United States of America) and last but not least, the one, the only,the RCP (Revolutionary Communist Party). Though small in numbers, they were able to get into positions of power that would let them set VVAW policy….

The ANSWER prototype was no better, at that point still working on defending Stalin and weeding out “revisionists.” Of course, back then the FBI was watching all this – having installed an impressive set of informants by then. And the FBI was also tracking the WCW precursor the Revolutionary Union, as the latter instructed its Midwest “cadre” that ““veterans are potential revolutionary force” and advised its cadre “to link up with veterans” in the “fights . . . against the Veterans Administration for benefits” because they could use any Washington demonstrations to “begin to realize our goal of linking the veterans’ struggle with the overall anti-imperialist movement.” Not to actually secure any veterans benefits, mind you; not to heal the hole in vets’ hearts or figure out why so many were sick. It was all about the “movement.”  Finally, Hassna continues:

1975wintersoldier_banner

In 1973 VVAW got a new name, and a whole new set of headaches. Now it was VVAW/WSO, VietNam Veterans Against the War/ Winter Soldier Organization. The addition of WSO meant that non veterans could join and be in positions to set policy. The left played on the guilt and pain that members had from the war. We (members) had to embrace Marx and bare our souls to our crimes against humanity. Meetings turned into political education classes, with criticism/ self-criticism periods thrown in to help us move forward for the revolution. Do I need to say how much of a royal pain in the ass all this was? On top of all this, there were people who took this crap seriously.

As you see above, they  even changed the banner on the group’s newsletter, to strongly resemble the Chinese flag.

I’ve read more scholarly accounts of this entire evolution from less folksy sources; check out tthe three major histories of the VVAW to a 1975 dissertation on the G.I. movement by a rather conservative Chicagoan who points out that the sectarian left had “different priorities.” More crucially, he added, the emphasis on “hating the brass” prevented them from making common cause with the officers who agreed with them.

No way to know whether the future for today’s rapidly-morphing soldier-dissent will play out similarly. But nothing I’ve learned in the past year has  made me feel, personally, any different from when I first saw Garett Reppenhagen, a man I respect hugely, first appearing at a podium with ANSWER streamed at the front.

I shouldn’t care about this, as a writer. There’s a lot of Yeatsian  circle-the-gyre energy to all this. But as someone who sees  the need for clear opposition to war and values the role of the soldier/vet, I do care. As the need to counter Obama-as-LBJ grows stronger, the fastest way to bury that voice in the margins is  to dress it in such ridiculous  clothing. Luckily, there are whole swaths that are already steering clear; I’ll watch as quietly as I can, to see what happens to the rest.

poetry friday a day early

cause that’s how it feels sometimes.




The Author to her Book

Thou ill-form'd offspring of my feeble brain,
Who after birth did'st by my side remain,
Till snatcht from thence by friends, less wise than true,
Who thee abroad expos'd to public view,
Made thee in rags, halting to th' press to trudge,
Where errors were not lessened (all may judge).
At thy return my blushing was not small,
My rambling brat (in print) should mother call.
I cast thee by as one unfit for light,
Thy Visage was so irksome in my sight,
Yet being mine own, at length affection would
Thy blemishes amend, if so I could.
I wash'd thy face, but more defects I saw,
And rubbing off a spot, still made a flaw.
I stretcht thy joints to make thee even feet,
Yet still thou run'st more hobbling than is meet.
In better dress to trim thee was my mind,
But nought save home-spun Cloth, i' th' house I find.
In this array, 'mongst Vulgars mayst thou roam.
In Critics' hands, beware thou dost not come,
And take thy way where yet thou art not known.
If for thy Father askt, say, thou hadst none;
And for thy Mother, she alas is poor,
Which caus'd her thus to send thee out of door.

call it love or call it reason

More flotsam from my life-on-Mars phase:

I didn’t know this video existed, until now. I wish I had a clip of Ochs’ performance at the first Winter Soldier (two years later than this TV appearance) but this is good enough  for now. Knowing that the vets in Detroit heard Ochs’ anthem, just before four days of hearings on war crimes, makes me feel more certain than ever that I chose the right title for the book.