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.
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.
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.
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?
There is so much to think about following President Trump’s illegal, un-American ban on immigrants from several predominantly Muslim countries. I’ll be attending the Copley Square rally later today that’s being organized by the Council on American-Islamic Relations, and will write about it for WGBH News.
For now, let me comment on a small piece of this. As I’m sure you know, Trump issued his executive order on Holocaust Remembrance Day, thus turning the nation’s back on a new generation of refugees at the same time that he was commemorating one of history’s most terrible events. And his statement regarding the Holocaust made no mention of the Jews because, you know, others suffered too.
In my first book, “Little People,” I explored a longstanding belief among people in the dwarfism community that Hitler rounded up all the dwarfs and had them killed. What I found actually reinforced the uniquely Jewish character of the Holocaust. In fact, dwarfs were largely left alone by the Nazis. Some may have been caught up in Hitler’s campaign to eradicate people with severe disabilities, but most people with dwarfism are healthy and ambulatory, and thus did not run afoul of the Nazi killing machine.
Members of the Ovitz family — dwarf entertainers from Hungary — even recalled being helped onto trains by German soldiers. But then it was discovered that they were Jews. They were shipped off to Auschwitz, where they became the subjects of Josef Mengele’s unimaginably cruel experiments. Incredibly, all of them survived.
I’ll be speaking at TEDxLowell this Sunday, April 27, on “Telling the Local Story: The Fate of Community Journalism in a Time of Cultural Upheaval.” Essentially I’ll be talking about what led me to write “The Wired City” as well as what’s next for local news. You can check out the slides for my presentation above.
It looks like a great slate of presenters. I’m especially looking forward to hearing from Becky Curran, a motivational speaker with dwarfism, who’ll talk about “The Media’s Perception of Little People and the Disability Community.” Way back in 2003 or ’04, I spoke about my first book, “Little People,” at Providence College. Becky was a student at PC and took part in the discussion.
Becky and I will be part of Session 1 at TEDxLowell, which will be held from 1 to 4:30 p.m. The event will take place at the United Teen Equality Center, located in downtown Lowell at 34 Hurd St. There is an admission fee; I hope that won’t dissuade you from dropping by.
Two people with dwarfism are running the Boston Marathon tomorrow, and today’s Boston Globe profiles them in a front-page feature. Globe reporter David Abel interviews Juli Windsor, who lives in the South End, and John Young, a teacher from Salem. His story is accompanied by a terrific video of Windsor produced by Thea Breite.
I don’t know Windsor, but I do know Young. He and his wife, Sue, and their son, Owen, are fixtures at Little People of America events, and we ran into them at a district conference in North Conway just a few weeks ago. Here is his blog. Young tells Abel:
The people who support and encourage me are the ones that get me to the starting line, while the ones who doubt or ridicule me are the ones that carry me to the finish line. Whenever I really start to hurt, I think of someone laughing, pointing, and saying, “You can’t do that!” and it seems to give me the strength to carry on.
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.
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 …