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.
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.”
John Young (via Facebook)
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.
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.
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.
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.
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