Category: Dwarfism

Huntington News editors tell Nieman Lab how they covered the encampment at NU

From The Huntington News’ Instagram feed.

The Huntington News, the independent student newspaper that covers all things Northeastern, is featured in a Nieman Lab roundup of how college papers have been covering pro-Palestinian encampments and protests on their campuses. Lab reporter Sophie Culpepper interviewed outgoing editor-in-chief Eli Curwin and his successor, Sonal Cutler, as well as student journalists at The Daily Texan at UT Austin, the Daily Trojan at the University of Southern California and The GW Hatchet at George Washington University.

The Northeastern encampment ended almost as quickly as it began — it popped up on Centennial Common on Thursday, April 25, and was cleared out by police that Saturday morning. But though the protest may have been shorter than on many other campuses, which in some cases are ongoing, it was no less fraught.

“It was very intense, and you kind of just were full of adrenaline until you had to step away,” Curwin told Culpepper. He added, though, that the chance to cover such an important story “was really cool, because it was like, this is what we’ve been learning about; this is what we’ve been practicing for.” The News had students at the site reporting around the clock right from the beginning. I should note, too, that Northeastern co-op students have been on the team covering the encampments for The Boston Globe, and Cutler has been covering protests for the Chronicle of Higher Education.

Culpepper also wrote about the difficulty of reporting on pro-Palestinian demonstrators who are protesting the actions of the Israeli government and how that has gotten caught up in the Jewish identity of many of the students — including journalists:

Curwin and Cutler are both Jewish, and Curwin has family in Israel. Well before October 7, “this issue has been … something I constantly think about,” Curwin told me. The divided campus, “people constantly criticizing or scrutinizing our coverage,” and his personal background all amounted to “a very stressful semester.”

Many of the critical Instagram comments the publication has received are along the lines of “you guys must hate Jewish people,” as Curwin said, or “you don’t care about Jewish voices,” as Cutler put it. They, like all five student journalists I spoke with across four publications, described a deep commitment to doing their best to represent everyone’s perspectives fairly and accurately.

Two other points I think are worth nothing. First, The Huntington News has been unable to get arrest records from the campus police because they are a private agency not bound by the state’s public records law. That ought to change, since they have some official police powers. Second, even with social media having falling into a morass over the past few years, the News still relies heavily on Twitter/X and Instagram. Cutler and Curwin said the News’ website is mainly accessed by parents and faculty, while the students themselves rely on social media.

Earlier:

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My first book, ‘Little People,’ is back in print — and this time there’s a Kindle edition, too

I am thrilled to report that my first book is back in print — and this time there’s an e-book to go with it.

“Little People: Learning to See the World Through My Daughter’s Eyes,” first published in 2003 by Rodale, is a book about dwarfism, part memoir, part journalism, part science and history. In 2008 Rodale allowed it to go out of print, and the rights reverted to me. I put together a print-on-demand paperback edition through the Harvard Book Store, which enabled me to sell a handful of copies over the years. Copies were produced by a printer called the Espresso Book Machine, nicknamed “Paige M. Gutenborg.” I wasn’t entirely happy with it, mainly because the cover was sticky to the touch. But it sufficed, and I later wrote about it for Nieman Reports.

Then, earlier this year, I was poking around the website for “Little People” to see if there was anything that needed to be updated. There sure was. I discovered that in April 2022 the Harvard Book Store had shut down Gutenborg and ended its print-on-demand service. I’m not aware that I was ever informed of this, but maybe I missed the email.

After considering a few alternatives, I decided to go with Amazon. It was the most convenient, offering high quality at a decent price. I was going to have to go to Amazon to set up a Kindle edition anyway, so I figured I might as well let them handle the print version, too. I’m very happy with the results. For the first time, I have a professional-looking paperback with a glossy, non-sticky cover. It includes the 2019 Foreword written by my daughter, Becky Kennedy. I don’t expect to sell a lot of copies, but maybe there will be an uptick. You can find it here.

I want to thank Andrew Blauner, who was my agent for “Little People” all those years ago. He and I spent some time earlier this summer looking into whether a publishing house might be interested, but nothing came of it. Still, it wasn’t for lack of trying, and I am, as ever, grateful for his support. Thanks, too, to photographer Tsar Fedorsky, who took the original cover photo and gave me permission to use it for the new editions.

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How ‘Freaks’ helped normalize people with disabilities: An excerpt from ‘Little People’

Nicolas Rapold has a fascinating essay in The New York Times (free link) about “Freaks,” a rarely seen 1932 horror movie directed by Tod Browning and  starring a troupe of sideshow performers — people with dwarfism, microcephaly, missing limbs and other conditions. As Rapold writes, “Freaks” has been embraced by some disability activists, as it conveys a “sense of both community and agency among the characters.” It’s also become such a cult classic that a friend of ours shows it at his birthday party every year.

In my 2003 book about dwarfism, “Little People,” I wrote about several artistic depictions of dwarfism, from “Freaks” to an Argentine film called “De eso no se habla” to “CSI.” Unfortunately, “The Station Agent,” starring the soon-to-be-well-known actor Peter Dinklage, was not released until shortly after the book was published, and that remains the gold standard in depiciting someone with dwarfism.

Here’s an excerpt from “Little People” in which I discuss “Freaks.”

***

For anyone who’s part of what the sociologist Erving Goffman calls a “stigmatized group,” identity as part of that group can all too easily take precedence over individual identity. Our changing attitudes toward dwarfism can be seen through artistic representations. Mini-Me and the late Hank the Angry, Drunken Dwarf aside, these representations are considerably more enlightened than they used to be. But the individual within is rarely shown, and even when he is, it is strictly within the confines of a group context.

Not long ago I rented the 1932 film “Freaks,” directed by the horror-movie pioneer Tod Browning. “Freaks” is a monumentally bad movie, and it was considered so offensive in its day that it was virtually impossible to see for many decades, excoriated in the United States and actually banned in Britain. Yet what fascinated me most was not its exploitive nature, which I had expected, but Browning’s apparent good intentions. At the beginning of the film, we are told that “freaks” — that is, the disabled freak-show actors who made up much of the cast — are as human as anyone else. And in fact, the first two-thirds of the movie consists of such folks as proportionate dwarfs, an achondroplastic dwarf, mentally retarded* microcephalics (“pinheads,” as they were known; think of Bill Griffith’s cartoon strip “Zippy the Pinhead”), and people without any limbs, all of them going about their business as normally as possible. It’s voyeuristic yet progressive at the same time.

Later, though, the movie transforms itself into the nightmarish vision of disability that the earlier images seem designed to counteract. When the average-size trapeze artist and her strongman boyfriend attempt to poison the dwarf she had married for his inheritance, the “freaks” murder the boyfriend and mutilate the bride, turning her into a monster that is part-woman, part-chicken. (Like I said, it’s a bad movie.) As the critic Joan Hawkins observes, the dénouement “directly contradicts the argument for tolerance that we are given at the beginning of the film. Having been initially reminded by the barker that physical difference is an ‘accident of birth,’ not the visible sign of some inner monstrosity, we are ultimately presented with a woman who has been turned into a freak as punishment for her immorality and greed.” Browning tells us that difference is morally neutral; then he shows us that it’s anything but.

One night when Becky was still a baby, we rented an Argentine film called “De eso no se habla” (“I Don’t Want to Talk About It”), a 1994 movie directed by Maria Luisa Bemberg. One of the stars is an achondroplastic woman named Alejandra Podesta, who marries a mysterious stranger played by Marcello Mastraoianni. We’d heard good things about it, and for the most part we were rewarded with a well-rounded coming-of-age portrait of a young woman with dwarfism. At the end, though, she runs away from the carefully constructed life that her overbearing mother (Luisiana Brando) has built for her so that she can discover her own individuality — which she accomplishes by joining the circus. We see her being greeted by a circus dwarf as she embarks on her new life. The message is muddled but unmistakable: despite being well-educated, happily married, and apparently accepted by her community, she can’t truly discover herself except by being with her own kind.

The modern version of this attitude was portrayed on television not too long ago, on the popular CBS show “CSI.” A murder has taken place at a Little People of America conference, and the crime-scene investigators have been called in to solve it. In the course of the next hour, we are treated to an earnest, politically correct, if not entirely accurate, seminar on the world of dwarfs and dwarfism. The dwarf actors themselves play characters who come across as capable and competent, yes, but also as prickly, defensive, bitter, even angry at their lot in life. The murderer turns out to be a dwarf who didn’t want his average-size daughter to marry a dwarf man — a rather nasty bit of self-hatred that was so predictable I’m surprised it made the final cut.

I don’t mean to be overly critical. The “CSI” episode stood out in many ways because of how good it was. We’ve certainly come a long way since “Freaks.” But I was struck by how even the most well-intentioned scriptwriters manage to fall into the trap of portraying dwarfs as associating mainly with other dwarfs (the LPA conference setting, after all, was an artistic decision, not a necessity) and as profoundly damaged by the mere fact of their dwarfism.

The one dwarf who might have been able to assert his individuality was the man who had been carrying on an affair with an average-size woman. And he was dead before the opening credits had finished rolling.

The group identity portrayed in “CSI” is clearly more progressive than that in “Freaks,” or even in “De eso no se habla.” But true individual identity is reserved for the average-size people who direct the dwarfs’ lives. For the most part, the dwarfs are not actors; they are acted upon. And when they do act, it is in negative, even horrifying ways: to kill and mutilate, to join the circus, to plan and carry out a complicated murder in a twisted effort to negate one’s own dwarfism.

* In 2003, the word “retarded” was not considered an offensive description for people with developmental disabilities; that came later. In fact, I also go into quite a bit of detail in “Little People” of how the word “midget” morphed from an accepted term for someone with proportionate dwarfism to an epithet on par with the n-word. Times change.

 

Local Democratic official’s pro-choice remarks veer into the ditch of eugenics

1930s Eugenics Society Exhibit. Photo (cc) from Wellcome Library.

One of the themes I explored in my 2003 book about dwarfism, “Little People,” was that in vitro diagnoses of genetic conditions — barely a glimmer 20 years ago — might one day lead to health-care providers, insurance companies and others pressuring parents to end pregnancies in order to save money and resources. I called my chapter on that topic “The New Eugenics.”

Now comes Michael Hugo, chair of the Democratic Committee in Framingham, who has managed to combine his support for abortion rights with a twisted argument in favor of eugenics. According the Framingham Source, Hugo urged the city council to pass a resolution supporting reproductive rights and to take a stand against so-called crisis pregnancy centers, which have been accused of using deceptive tactics in order to persuade women not to go through with abortions. So far, so good. But then he said this:

Our fear is that if an unqualified sonographer misdiagnoses a heart defect, an organ defect, spina bifida, that becomes a very local issue because our school budget will have to absorb the cost of a child in special education, supplying lots and lots of special services to children, who were born with the defect. So it’s our hope that the Council tonight will pass this ordinance, and by doing so perhaps one of the businesses that might be looking at coming to Framingham, will look at Framingham and decide, well, we better just keep driving and look for a different town or a different city.

The Source quotes several councilors who objected to Hugo’s remarks, using words and phrases like “repulsed,” “profoundly repugnant” and “horrified.” The resolution in favor of abortion rights passed, but the council overwhelmingly made it clear that had nothing to do with Hugo’s offensive remarks. According to a follow-up story in The Boston Globe, Hugo later took to Facebook and apologized.

Hugo’s bizarre reasoning is exactly the sort of thing that anti-abortion-rights forces like to jump on when arguing that abortion ought to be illegal. Hugo’s remarks were not only hurtful, but they were potentially damaging to the cause he allegedly supports. What on earth was he thinking?

Dwarfism, disability and why universal design matters

Angela Van Etten

I was honored to be asked by the Disability Justice Project if I’d share this excerpt from “Little People: Learning to See the World Through My Daughter’s Eyes.” It’s on the importance of universal design and focuses on the work of Angela Van Etten, a longtime activist with Little People of America and the author of several books — most recently “Always an Advocate: Champions of Change for People with Dwarfism and Disabilities.”

The Disability Justice Project is based at Northeastern University and headed by my School of Journalism colleague Jody Santos.

A new treatment for dwarfism brings us closer to the end of genetic diversity

Back when I was researching “Little People,” my 2003 book about dwarfism, the only treatment for achondroplasia — the most common form of dwarfism — was painful, dangerous limb-lengthening surgery. Understandably, very few people opted for such a drastic treatment, and families whose children had such surgery (it doesn’t work well on adults) were thought to have insufficient “dwarf pride.”

Now an actual treatment for achondroplasia is on the horizon. The New York Times reports that a drug called vosoritide seems to target the genetic anomaly that stops the long bones of the arms and legs from growing. Since that anomaly also causes spinal and respiratory problems, the treatment could prove to be a real breakthrough in improving people’s quality of life.

One of the main themes of “Little People” is the social and cultural meaning of difference — whether we are as comfortable with it as we claim to be, and if we’d eliminate it if we could. At the time, the main threat to dwarfism, and all kinds of genetic differences, was the rise of cheap, routine in-utero genetic-screening tests. Now that an actual treatment for achondroplasia is upon us, the calculation has changed considerably. As the Times’ Serena Solomon writes:

Vosoritide, said Mark Povinelli, the L.P.A.’s [Little People of America’s] president, “is one of the most divisive things that we’ve come across in our 63-year existence.”

The organization does not endorse specific treatments, but encourages members to consider more than height in medical decisions. “We want to show that you can have a completely fulfilling life without having to worry about growth velocity,” said Mr. Povinelli, calling fixations on height a societal issue.

Unlike limb-lengthening surgery, if vosoritide proves to be safe, effective and affordable, I suspect most average-size couples who have a child with achondroplasia will opt for the treatment. Drugs available for several decades have all but eliminated dwarfism caused by hormonal deficiencies, and I can’t imagine why achondroplasia would be any different. We would have chosen it for our adult daughter, Becky, who has achondroplasia.

Doctors are not going to educate new parents about dwarf pride or the advantages of diversity. Instead, they’re going to tell them about a treatment. This not an unalloyed good, but it is reality.

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Josef Mengele and the mediocrity of evil

The Ovitz siblings arrive in Israel in 1949.

When I was researching “Little People,” my book about dwarfism, one of the things I learned was that Josef Mengele was dumb as a rock. His experiments were not just crimes against humanity; they were also completely unscientific. He became a Nazi because it offered a chance for career advancement that wasn’t otherwise available to him.

This review by Adam Gopnik of The New Yorker gets into all of that.

I know this because I was looking into the Ovitz family, a troupe of Hungarian-Jewish dwarf entertainers who were saved by Mengele, but who suffered horribly, after they were sent to Auschwitz. Incredibly, all of them survived.

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New edition of ‘Little People’ features a foreword by Becky Kennedy

I’m excited to announce that the third edition of “Little People: Learning to See the World Through My Daughter’s Eyes” is now available.

Published by Rodale in 2003 and favorably reviewed by The Wall Street Journal, The Boston Globe and Publishers Weekly, “Little People” can be purchased as a high-quality publish-on-demand version through the Harvard Book Store. The best part about this new edition is that it features a foreword by my daughter, Becky Kennedy, who reflects on what it has been like to live with dwarfism.

I’ll be speaking about “Little People” this Saturday at the Little People of America district conference in Portland, Maine.

The latest low: The bully-in-chief appoints a judge who supports dwarf-tossing

Candidate Trump mocks a disabled reporter in 2016.

Previously published at WGBHNews.org.

President Trump, whose multifarious assaults on basic decency include mocking a disabled reporter in front of a crowd of hooting supporters, may have hit yet another new low. Neomi Rao, Trump’s choice to replace Brett Kavanaugh on the D.C. Circuit Court of Appeals, is an enthusiastic supporter of dwarf-tossing. Rao’s peculiar obsession with the practice of throwing short-statured people against Velcro walls was reported late last week by Stephanie Mencimer in Mother Jones.

As you might imagine, Rao, a veteran right-wing activist currently serving in the Trump administration, does not claim to take part in this humiliating and dangerous practice. Rather, she has argued on several occasions that dwarf-tossing should be a matter of choice, writing that it should be up to the tossee whether picking up a few bucks in some shady barroom is worth the risk to his health and his self-respect.

Rao explained her views several years ago at The Volokh Conspiracy, a libertarian legal blog, in which she criticized a ruling in France against a little person who wanted to take part in dwarf-tossing. Rao wrote that it “demonstrates how a substantive understanding of dignity can be used to coerce individuals by forcing upon them a particular understanding of dignity irrespective of their individual choices.” She added:

The issue is not whether laws prohibiting dwarf throwing, burqa wearing, prostitution, or pornography may be desirable social policy. Rather these examples demonstrate that the conception of dignity used to defend such policies is not that of human agency and freedom of choice, but rather represents a particular moral view of what dignity requires. These laws do not purport to maximize individual freedom, but instead regulate how individuals must behave in order to maintain dignity (and in the case of criminal prohibitions, stay out of jail).

The individual-rights argument may seem appealing. But it ignores all kinds of activities that society has decided to ban or regulate in order to protect not just the person taking part in those activities but also the rest of us — prostitution, as Rao notes, as well as drug use, cockfighting, underage drinking, casino gambling (until recently), practicing medicine without a license, and driving on the wrong side of the street. So it is with dwarf-tossing, which not only puts the person being tossed at risk of injury because of the spinal abnormalities present in most forms of dwarfism but also places others with dwarfism in harm’s way by normalizing a practice that should be considered beyond the pale.

I have skin in this game, though I hardly consider it a game. Our daughter, Rebecca, has achondroplasia, the most common type of dwarfism. My 2003 book, “Little People,” examines the culture and history of the dwarfism. Among the people I interviewed was Doyle Harris, a dispatcher at the University of Louisville and a former official with Little People of America, an organization for dwarfs and their families. As I wrote in the book:

Nearly twenty years ago, he [Harris] and some friends were waiting outside a Louisville nightclub. It was right around the time that dwarf-tossing — an Australian import that rears its ugly head wherever drunk, stupid men in their twenties gather — had first come to the attention of the media. “One of these guys came out — he was a little inebriated — and he went, ‘Oh, they’re going to have dwarf-tossing tonight. Well, let me practice,'” Harris recalled. “And the next thing I know, the guy literally picks me up and throws me out onto the grass. It was not a good situation. It was very demeaning to me. I was in fairly nice clothes, I was looking to go out, and I’m out in the grass, rolling around, getting grass stains and muddy. It was totally against my will.”

Florida, at one time the locus of dwarf-tossing in the United States, banned the practice in 1989. Incredibly, a state legislator proposed lifting the ban in 2011, dredging up the tiresome freedom-of-choice argument. As Angela Van Etten, a lawyer with dwarfism whose work helped lead to the original ban, wrote in The Huffington Post: “Dwarf tossing appeals to a lower instinct in people and creates a hostile environment in which Little People are disrespected and ridiculed. It legitimizes bully behavior.”

Exactly. Yet we now live in an environment in which bullying is not only condoned but indulged in by the president. In that respect, Neomi Rao seems like the perfect Trump appointment. According to Mother Jones, in addition to her fervor for dwarf-tossing, she holds retrograde views on LGBTQ rights and affirmative action and is an anti-regulation zealot. She should not be confirmed. But who will stop her?

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