“The Wired City” world tour continues on Monday, as I’ll be speaking at 6:30 p.m. at the Langley-Adams Library in Groveland. I’ll also have for sale a few rare original hardcovers of “Little People.” Hope you can stop by.
The Daily Mail has published a lengthy excerpt from a new book about the Ovitz family, a troupe of seven dwarf entertainers from Hungary who were shipped off to Auschwitz and subjected to horrendous torture at the hands of Josef Mengele after it was discovered that they were Jewish.
The book, “Giants: The Dwarfs Of Auschwitz,” was written by Yehuda Koren and Eilat Negev. It appears to be an extension of an earlier book by the two called “In Our Hearts We Were Giants: The Remarkable Story of the Lilliput Troupe.” (Thanks to Fred Short for pointing me to this.)
I wrote about the Ovitzes in my book about dwarfism, “Little People: Learning to See the World Through My Daughter’s Eyes.” There’s a longish section about them toward the end of Chapter 4. I had seen a documentary about the Ovitzes at the Little People of America national conference in 2002, which prompted me to do some additional research.
One of my findings was that Nazis, contrary to what many people within the dwarf community believed, had not targeted people with dwarfism for elimination — unless they were Jews. Indeed, what happened to the Ovitzes underscored the uniquely Jewish nature of the Holocaust.
In the documentary, “Liebe Perla” (“Dear Perla”), Perla Ovtiz recalls that she and her family had continued to tour Europe and perform even after the outbreak of World War II. She remembers a time before their Jewish identity was discovered when “the Nazis gave us a hand, lifted us onto the packed train and helped us find some space.”
Though being Jews landed them in Auschwitz, being dwarfs kept them alive, as Mengele wanted to keep them around for his sick experiments. Another Jewish dwarf, Alexander Katan, was not so lucky. At the Mauthausen concentration camp, he was killed, and his flesh was stripped off his skeleton so that it could be displayed. Koren and Negev write that the Ovitzes feared a similar fate.
Incredibly, well into her later years of life Perla Ovitz remained on some level grateful that Mengele had saved her and her siblings. In “Liebe Perle,” she tells the filmmaker that she cried when she learned Mengele had died in Uruguay. “I can’t say anything bad about him,” she says. Truly a horrible and complicated tale.
One day in the summer of 2003 I found myself in a hotel lobby, engaged in an intense conversation with Andrew Solomon. His book on depression, “The Noonday Demon,” had won the National Book Award. Now he was working on a new project — about families with children who were so different from their parents that they called into question the very meaning of identity.
Solomon wanted to interview me because our daughter, Becky, has achondroplasia, the most common form of dwarfism. She had survived a rather harrowing infancy during which her too-small airways left her struggling for survival. She needed a tracheotomy, oxygen tanks and home nursing until she was nearly 3 years old …
I’m pretty excited about this. Nine years ago Andrew Solomon, winner of the National Book Award, blurbed my book on dwarfism, “Little People.” He also interviewed me at the 2003 Little People of America conference for his next project — a book about families whose children were different from their parents, whether they be disabled, gay or suffering from mental illness, to name just a few examples.
That project — “Far From the Tree: Parents, Children, and the Search for Identity” — has just been published, and has been the object of rapturous reviews. The New York Times alone has published two raves (here and here) as well as a feature on Solomon and his own family. And it turns out that I made the cut, as he both quotes from our conversation and cites “Little People” in several spots.
Naturally, I’m trying to figure out how this might benefit “Little People.” Although it’s officially out of print, I sell a high-quality self-published paperback. (You can read about how that came about in a piece I wrote for Nieman Reports.) So far I’ve taken a few small steps: I’ve removed the free online edition (except for the Introduction and Chapter One) and made it easier to buy a copy. As you can see in the right-hand column, I’ve pumped up its presence on Media Nation. And I’m going to try Google ads again, at least through Christmas.
Anyone have any other ideas? Are there any independent bookstores in the area that would be interested in carrying it?
I have a simple reason for voting against Question 2, the “Death with Dignity” referendum, which would, if passed, legalize physician-assisted suicide in Massachusetts. People in the disability-rights movement who I respect are against it. And I agree with their reasoning.
Unlike other people you may have heard from on both sides of the question, I do not have any heartbreaking or poignant stories to share. Rather, I have a perspective that I gained a decade ago when I was researching my first book, “Little People.”
Among other things, I learned disability-rights activists worry that advances in medical technology are making it increasingly easy to diagnose genetic conditions in utero — thereby leading to the likelihood that parents will select abortion, even in cases (such as dwarfism) where the disability is not particularly severe or incompatible with what society considers to be a “normal” life.
Indeed, my wife and I encountered that attitude ourselves when our then-infant daughter saw a geneticist who wanted us to know there was nothing that could have been done. What she meant was that Becky’s dwarfism couldn’t have been diagnosed in utero (it could today), and thus we shouldn’t feel bad that we weren’t given a chance to choose abortion.
We were shocked, but I guess we shouldn’t have been. And in researching “Little People,” I learned from the geneticist Dorothy Wertz (pdf) that many people would choose abortion if they were told their child would be a dwarf — and, significantly, that medical professionals were more pro-abortion than lay people.
That’s the attitude disability-rights activists are worried about with regard to Question 2: a negative approach toward people who are sick or disabled, and who might be pressured into choosing suicide by family, insurance companies and doctors. And that’s why I’m voting no.
I urge you to read a truly moving essay in this week’s Phoenix by S.I. Rosenbaum, and to listen to an interview that was broadcast in September by WBUR Radio (90.9 FM) with disability-rights activist John Kelly, who opposes Question 2, and Dr. Marcia Angell, who’s for it. You can also learn more about the reasons for opposing physician-assisted suicide at Second Thoughts. The argument in favor is available at Death with Dignity.
What follows is an excerpt from “Little People” dealing with research about attitudes about disability and abortion.
I interviewed Dorothy Wertz, a psychiatrist affiliated with the Eunice Kennedy Shriver Center in Waltham, on a cold February day in the sunroom of her home on Massachusetts’s South Coast. Her husband was dying of lung cancer. She would die a year later. Nevertheless, she cut a flamboyant figure, tall and with a strong physical presence despite her advanced years, wearing a pillbox hat, turquoise earrings, and an enormous silver-and-turquoise necklace that looked heavy enough to weigh her down. I’d met her years earlier when I took part in a study she’d overseen regarding the attitudes that parents of disabled kids hold toward the medical establishment. I liked her forthright, down-to-earth manner. What I didn’t like so much was what she had learned about attitudes toward disability — including dwarfism.
In the late 1990s Wertz conducted a study of about two thousand people — 1,084 genetics professionals, 499 primary-care physicians, and 476 patients. One of the disabilities that participants were questioned about was achondroplasia, the most common form of dwarfism. The results were stunning. Among the genetics professionals, 57 percent would choose abortion if it were detected in utero; among physicians, 29 percent; and among patients, 24 percent.
To bracket this, let me pull out two other findings. The first pertains to Down syndrome, certainly a serious genetic condition, but one not incompatible with a good quality of life. Here the proportion of genetics professionals who would abort was 80 percent; physicians, 62 percent; and patients, 36 percent. The second involves a genetic predisposition to severe obesity, which is not a disability at all, or even destiny. After all, parents can teach their kids to eat properly and lead healthy, active lives. Yet even in this instance, 29 percent of genetics professionals would choose to abort, as well as 13 percent of physicians and 8 percent of patients.
What’s frightening about all of this is that we are closer to screening for such conditions on a routine basis than many people realize. Some day — perhaps in a decade, perhaps two or three — it will be possible to lay out a person’s entire DNA on a computer chip, all thirty thousand or so genes, and compare that person’s DNA to the ideal. Such chips could be generated for early-term fetuses just as easily as for those already born. Once the use of such technology becomes routine, it would cost “mere pennies per test,” as Wertz has written, to screen fetuses for thousands of genetic conditions. Including, of course, achondroplasia and several other types of dwarfism.
Wertz’s study points to another potential concern. Across the board, her findings show that ordinary people are far less likely to choose abortion than are medical professionals. (To be sure, one in four ordinary couples would choose abortion if they learned their child would have achondroplasia, which is high by any measure.) Yet it is medical professionals who will counsel couples when they learn that the child they are expecting would have a disability. What kind of pressure will these professionals use to obtain what is, to some of them, the preferable result? If we had learned the fetus Barbara was carrying in the early spring of 1992 would have severe respiratory problems and could have a whole host of other complications as well, what would we have chosen to do? There was no Becky at that point, only a possibility. And the possibility would have sounded more frightening than hopeful.
Little People of America has long argued that prospective parents who learn that their child will have a type of dwarfism should be provided with information about the good lives that most dwarfs lead, and even be given a chance to meet dwarf children and adults. It’s a great idea. But will it happen? And at a time of skyrocketing medical costs, are there too many social pressures against that happening? There’s no doubt that, in many instances, abortion would be in the best interest of insurance companies. Think of all the money they could save if they refused to cover a fetus that has been diagnosed with a potentially expensive genetic condition. Some parents, of course, would not choose abortion because of their religious or moral beliefs. But what about the vast majority of us — the people who regularly tell pollsters that they’re pro-choice, although they may be deeply uncomfortable with abortion personally? Would they be able to resist — would they, should they, even attempt to resist — when faced with the possibility of financial ruin?
And abortion is just one part of this, a crude, archaic approach that will likely fade away with improvements in medical technology — improvements that will raise few of the moral qualms that so divide the culture today. For instance, when you think about it, sex is a really messy, random way of reproducing. Sure, it’s fun. But look at all the things that can and do go wrong. In his book Redesigning Humans, Gregory Stock argues that in vitro fertilization will someday be seen as the only proper way to have children. “With a little marketing by IVF clinics,” he writes, “traditional reproduction may begin to seem antiquated, if not downright irresponsible. One day, people may view sex as essentially recreational, and conception as something best done in the laboratory.”
Even average-size couples who wouldn’t abort a fetus with achondroplasia would, in all likelihood, choose against implanting an embryo with the mutation. You’ve got five embryos in that Petri dish over there, and you can only implant one. This one has the genetic mutation for Down syndrome; that one has the mutation for achondroplasia; the other three are mutation-free. All right, which one do you think should be implanted?
And thus we will take another step down the road toward the “new eugenics” — a road that, in Stock’s utopian vision, will include artificial chromosomes to include spiffy new designer genes that will protect our descendants from disease, help them to live longer, and make them smarter, better, happier, and just generally imbued with oodles of wonderfulness.
Ultimately Stock posits a world in which we’re going to eliminate achondroplasia and hundreds, if not thousands, of other genetic conditions, predispositions, and tendencies. And we’re going to do it either by eliminating any individual whose genes we don’t like — or we’re going to change the genes.
Tomorrow I’ll be part of a panel on e-books being organized in Boston by the Association of College and Research Libraries. We’re supposed to talk about what we like and don’t like about them, and I can do that. But what I really hope to discuss is the place of e-books in a world in which what we used to think of as public space is increasingly being turned over to private, profit-making entities.
Let me explain what I mean with a couple of non-book examples.
In 2003 I bestowed a Boston Phoenix Muzzle Award on Crossgates Mall, in the Albany, N.Y., suburb of Colonie, for calling police and having a man arrested because he was wearing a mildly worded T-shirt in protest of the war in Iraq. The protester — actually, he was just having a bite to eat in the food court after picking up his purchase from the mall’s T-shirt store — was quickly released.
But there’s almost no chance he would have been arrested if he’d been hanging out in the village square rather than a mall. The trouble is that in too many cities and towns, we no longer have a village square except in the form of enclosed spaces owned by profit-seeking corporations. What happened to that protester said a lot more about our privatized idea of community than it does about that one particular incident.
In 2008 the Beverly Citizen, a weekly newspaper on Boston’s North Shore owned by GateHouse Media, discovered what can happen when you turn over some of your publishing operations to Google. The Citizen had posted a video of the annual Fourth of July “Horribles” parade, which included an offensive float that featured a giant, water-squirting penis. The float mocked an alleged “pregnancy pact” involving girls at Gloucester High School, a much-hyped story that turned out to be not quite true.
Although the Citizen’s judgment in posting the video could be questioned, there was no doubt that the float was newsworthy, as it had been seen by hundreds of people attending the parade. Yet Google-owned YouTube, which GateHouse was using as a video-publishing platform, took it down without any explanation. It would be as though a printing company refused to publish a particular edition of newspaper on the grounds that it didn’t like the content. YouTube is an incredibly flexible tool for video journalism. But Google has its own agenda, and hosting content that might offend someone is bad for business.
What’s that got to do with e-books? A physical book, once printed, enters a public sphere of a sort, especially if it’s purchased by a library. But an e-book remains largely under the control of the corporation that distributed it — most likely Amazon, Apple or Barnes & Noble.
We all remember those horror stories from a few years ago when some books people had purchased suddenly disappeared from their Kindles because Amazon was involved in a rights dispute. (Ironically, the books included George Orwell’s “1984.”) In some cases, students lost books they needed for school, along with their notes.
More recently, Apple refused to carry in its iTunes store an e-book by Seth Godin called “Stop Stealing Dreams.” The reason: Godin included favorable mentions of — and links to — other e-books that were available only through Amazon. “We’re heading to a world where there are just a handful of influential bookstores … and one by one, the principles of open access are disappearing,” Godin wrote.
And I’m not even getting into the U.S. Department of Justice’s investigation of alleged price-fixing by Apple and several leading book publishers.
Another concern I have involves the rights of authors. Several years ago Rodale, the publisher of my first book, “Little People,” reassigned all rights to me after the book had reached the end of its natural life. I published the full text on the Web, which led to my hometown high school’s adopting it as its summer read — which in turn pushed me to create a self-published paperback edition with the help of the Harvard Book Store in Cambridge. “Little People” has had a pretty nice second life for an out-of-print book. (I wrote about the experience recently for Nieman Reports.)
But now that e-books and e-readers have become ubiquitous, I’m worried that publishers will simply have no incentive to let authors benefit from the full rights to their own work. If a publisher can make a little bit of money by selling a few e-copies each year, then it might just decide to keep those rights to itself. This is long-tail economics for the benefit of corporations, not authors.
And have you ever tried to lend an e-book to someone?
There is a lot to like about e-books. As someone with terrible eyesight, I like being able to adjust the type to my own preference and use my laptop’s or iPhone’s backlighting rather than depend on iffy room lighting. And my iPhone, unlike whatever book I might be reading, is always with me.
But when unaccountable corporate interests maintain control over what shall take place in the village square, what content shall be deemed suitable for public consumption and what rights the authors and even the purchasers of books shall have, we have put our culture at risk in ways we couldn’t have imagined a generation ago.
Angela Van Etten, an old friend from Little People of America, has written an excellent commentary for the Huffington Post on what’s wrong with dwarf-tossing. (And good grief, Arianna. “Weird News”? Really?) As you may have heard, a state legislator in Florida wants to repeal that state’s law against dwarf-tossing on the grounds that letting drunks hurl little people across barrooms would somehow help the economy.
Van Etten does a good job of explaining the difference between people with dwarfism who exploit their short stature for profit, like Verne “Mini-Me” Troyer, and people who allow themselves to be exploited — that is, the tossees. Among other things, dwarf-tossing is dangerous, because people with dwarfism have unstable spines.
In 2002, Van Etten and her husband, Robert, were interviewed by John Stossel, then of ABC News’ “20/20,” who mocked their opposition to a campaign led by a dwarf to overturn the Florida law. Fortunately, the law held.
I had the privilege of interviewing the Van Ettens during the 2002 LPA national conference in Salt Lake City, and they pop up several times in my book “Little People.”
If I had known John Young when I was writing “Little People,” I might have devoted a chapter just to him. A 44-year-old math teacher school at the Pingree School in Hamilton, Young is a dedicated triathlete, an unlikely pursuit for someone with dwarfism.
On Saturday, the Salem News profiled Young on the eve of the Witch City Triathlon — a half-mile swim, a 13-mile bike race and a three-mile run. People with achondroplasia, the most common form of dwarfism, are generally advised against running because of structural challenges in their spinal columns. Yet Young told the News’ Michael Mastone that his exercise regiment actually saved him from the likelihood of major back surgery.
I don’t know what his secret is, but I do know that I’ve been taking a nutritional supplement he recommended in the hopes of extending my own running career for a few more years.
Young reports on Facebook that he finished the triathlon yesterday in 1:59:28, beating his time last year by 12 minutes.
This weekend, we’ll see John, his wife, Sue Casey, and their 7-year-old son, Owen, in Bedford, N.H., at Camp Come As You Are, an annual program for kids and families affected by dwarfism. (The banner photo on my “Little People” site is from a past camp.) John’s stories about his athletic prowess are always a highlight of Little People of America get-togethers, and I’m looking forward to catching up with him.
More: Check out Young’s blog.