How tech gave “Little People” a second life

I’ve got an essay in the new issue of Nieman Reports on how technology enabled me to revive “Little People,” my 2003 memoir on raising a daughter with dwarfism — online at first, and then later as a print-on-demand paperback.

And yes, you can buy a copy. I’m so glad you asked.

More progress on the “M”-word

Robert Bertsche, a prominent First Amendment lawyer in Boston, passes along the latest news from the AP Stylebook Online (yes, I’m too cheap to subscribe):

dwarf The preferred term for people with a medical or genetic condition resulting in short stature. Plural is dwarfs.

midget Considered offensive when used to describe a person of short stature. Dwarf is the preferred term for people with that medical or genetic condition.

My 2004 edition of the AP Stylebook does not contain an entry for either word. Clearly the dwarfism community is making progress in its efforts to educate the public about the “M”-word.

In 2009, the New York Times’ then-public editor, Clark Hoyt, wrote that the Times had concluded the “M”-word was offensive.

I discuss the rise and fall of the “M”-word in Chapter Seven of my book on dwarfism, “Little People.”

You just can’t keep a bad word down

For those of us in the dwarfism community, it sometimes seems that the outside world is mainly interested in two things: how people with dwarfism are depicted in popular culture and the continued debate over the word “midget,” which is regarded as offensive by nearly everyone within the community.

Here is former New York Times public editor Clark Hoyt’s 2009 column in which he acknowledges that the “M”-word is offensive and would no longer be used in the Times.

Last week the “M”-word popped up when commentator Bernard Goldberg used it on “The O’Reilly Factor” while critiquing former MSNBC talk-show host Keith Olbermann. In observing that Olbermann’s relatively low ratings in comparison to Fox News were nevertheless higher than anyone else’s at MSNBC, Goldberg compared Olbermann to “the tallest midget in the room.”

My friend Bill Bradford, who’s the senior vice president of Little People of America, called my attention to it on Facebook, and we hashed it out a bit. My inclination was to give a pass to Goldberg on the grounds of his well-documented cluelessness. But another friend, Julie Holland, quickly discovered that Goldberg knew exactly what he was saying. Last February, in defending the use of such charming terms as “Negro” and “retarded,” Goldberg told Bill O’Reilly:

If you use the word midget, the little people community are going to jump all over you. I mean not literally, but they’re going to get on you.

That sound you hear in the background is O’Reilly snickering.

On Sunday, meanwhile, the Boston Herald ran a feature on a show at the Seaport World Trade Center charmingly called “Motorcycles, Midgets and Mayhem,” starring dwarf wrestlers called the Half-Pint Brawlers.

Another LPA friend, District 1 director Barbara Spiegel, is quoted as objecting both to the spectacle and to the use of the “M”-word. The story, by Renee Nadeau Algarin, is benign enough, and I’m not suggesting the Herald should have ignored it. But it’s accompanied by an extensive slide show and a come-on to buy reprints. The comments are about as bad as you would expect.

There’s no question that the way people with dwarfism are depicted in the media is far more positive than it was a generation or two ago. Reality shows such as “Little People, Big World” and “The Little Couple” have helped normalize dwarfism in the eyes of the public.

Yet in the more benighted corners of the media, it seems that things haven’t changed much at all.

Big news about “Little People”

I am very excited to announce that my hometown of Middleborough has adopted my book on dwarfism, “Little People,” as its high-school summer-reading book. Students and teachers at Middleborough High School (from which I graduated in 1974) will be asked to read “Little People” and be prepared to discuss topics such as genetics, history and disability throughout the school year. I’ll be visiting a few times.

When Doug Haskell, who chairs the MHS English department, told me about the selection a couple of months ago, I had to scramble. The book has been out of print for several years. There was also no reliable way of estimating how great demand would be  — the full text of the book is already available online for free, and no doubt a lot of students will try to read it that way.

So, working with Bronwen Blaney at the Harvard Book Store of Cambridge, I put together a print-on-demand paperback edition, thus eliminating the need to print a bunch of copies that may or may not sell. Not to go too heavy on the marketing, but I was pleased with how well it came out — it really looks and feels like a trade paperback. The price, $16, is pretty reasonable, given that the list price of the hardcover edition was $25.

I have completely retooled the website using WordPress.com. I’ve also created a Facebook group, where I hope students, teachers and anyone else who is interested will feel free to discuss “Little People” and issues related to dwarfism.

What health-care reform means to our family

In my latest for the Guardian, I write about what health-care reform means to our family — and, specifically, to our daughter, who will not have to worry being excluded from insurance because of her dwarfism.

A few thoughts on China’s dwarfism theme park

Billy Barty and Midgets of America gather in Reno, Nev., in 1957.

There’s a fascinating story in today’s New York Times about a theme park in China that stars people with dwarfism. Sharon LaFraniere writes that the park, the Kingdom of the Little People, is controversial because it depicts dwarfs in demeaning roles. And there’s no doubt it’s jarring to modern Western sensibilities. But I’m not sure it’s really that simple.

For one thing, it’s clear from the story that, for people with disabilities living in China, the Kingdom of the Little People is a pretty good gig. Here’s a relevant excerpt:

Many performers said they enjoyed being part of a community where everyone shares the same challenges, like the height of a sink. “Before, when we were at home, we didn’t know anyone our size. When we hang out together with normal-size people, we can not really do the same things,” said Wu Zhihong, 20. “So I really felt lonely sometimes.”

For another, I think those of us involved with the dwarfism community sometimes tend to forget the reality of the not-too-distant past. Gary Arnold, spokesman for Little People of America, is quoted as saying, “I think it is horrible. What is the difference between it and a zoo?”

Arnold’s point is well-taken, to an extent. Yet LPA was founded by an actor, the late Billy Barty, and the group originally came together in the late 1950s under a banner that read “Midgets of America” — something that would provoke protests today.

Moreover, a number of people with dwarfism, including intelligent, successful people who are LPA members in good standing, have exploited their unique features to get work in the entertainment business. And movies like “The Station Agent” remain the exception.

In the last few years we’ve seen the mainstreaming of dwarfism, due in large measure to television series such as “Little People, Big World” and “The Little Couple.” As I’ve written before, I think such shows are, overall, a positive. Yet we’re kidding ourselves if we think they’re not on some level exploitive as well. Who would sit on the couch and watch average-size, non-dysfunctional (my Gosselin caveat!) families go about their daily lives?

Finally, you’ll note that I did slip in the word “dwarf” even though Arnold is quoted as saying that some find it offensive. Unlike the M-word, on which there is universal agreement as to its offensiveness, the notion that “dwarf” is offensive is not a mainstream view within LPA, although Arnold is right that there are those who don’t like it. But it is a word my daughter uses, and I am not offended.

You didn’t think I was going to close this out without flogging my book, did you? Here you go.

You will also note, when you look at the photos that accompany the Times story, that one of them is the same picture that was hilariously misidentified yesterday as Secretary of State Hillary Clinton and Chilean President Michelle Bachelet.

The R-word and the M-word (and the F-word!)

Lauren Beckham Falcone has a good column in today’s Boston Herald, criticizing White House chief of staff Rahm Emanuel for using the phrase “fucking retarded.” Falcone, who has a daughter with Down syndrome, writes:

Here’s the deal: the R-word is not an innocuous euphemism. It’s as hateful and belittling and bullying as racial slurs and homophobic epithets and sexual harassment.

Now, of course, Falcone is not responsible for her co-workers at the Herald. But it’s long past time for editors there to ban the word “midget,” a demeaning term for people with dwarfism. I realize Howie Carr’s head might explode the next time he tries to describe Bill Bulger as something other than “the Corrupt Midget,” but he’ll get over it.

By the way, it’s nice to see that we’ve evolved to the point at which people are more offended by the R-word and the M-word than they are by the F-word.

More on the difference gene

Last week I wrote about a new, cheap test that will tell prospective parents whether their children are at risk of having one of 100 or so different genetic conditions, including two forms of dwarfism.

Today I expand on that theme in the Guardian, arguing that such screening is tied to our conflicted feelings about difference.

Targeting the difference gene

A major theme of my 2003 book on dwarfism, “Little People,” was what would happen in the not-too-distant future when inexpensive tests would be developed to detect the 100 or so most common genetic conditions in utero. Would dwarfism and other human variations be eliminated? How would it change our uneasy relationship with difference, which we both celebrate and fear?

Now it’s starting to happen. The New York Times reports today that a company called Counsyl has come up with exactly such a test. It costs only $698 for couples. It’s not an in utero test; rather, the aim is to tell would-be parents whether they are carriers of genetic conditions. And there are questions as to how effective the test will be. But we have finally reached the starting line.

The most common form of dwarfism, achondroplasia, is not on the list, and there’s a good reason for that: it’s a dominant condition. If you have the gene, you’re a dwarf, and a carrier by definition. But diastrophic dysplasia and cartilage-hair hypoplasia, recessive forms of dwarfism, are on the list. (For those of you who have seen “Little People, Big World,” Amy and Zach Roloff have achondroplasia. Matt Roloff has diastrophic dysplasia.)

And what are you supposed to do if you learn you are a carrier? Counsyl calls these “Preventable Genetic Diseases Covered by the Universal Genetic Test.” We get the picture, and it’s mighty chilling.

We are all entitled to as much information as possible. It’s up to each of us to decide what to do with that information. Nevertheless, you can’t help but be concerned about where this is going to lead.

The M-word revisited

New York Times public editor Clark Hoyt acknowledges that the word “midget” is offensive, and writes that the Times will no longer use it to describe people with dwarfism. Here’s my earlier item.