Tag: 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 makes an ugly appearance

It’s hard to believe, after all these years, that the word “midget” would pop up in a front-page story in today’s New York Times. David Segal writes:

After the Depression, Congress formed what became known as the Pecora Commission, which grilled top financiers. But the point was mostly to embarrass them, and the upshot was to set the stage for stricter regulations. The most indelible image of the commission’s hearings was a photo of J. P. Morgan Jr. with a midget who had been plopped in his lap by an opportunistic publicist.

The American Heritage Dictionary makes it clear that the M-word is “offensive.” In my book, “Little People,” I trace the history of this unfortunate word, possibly coined in the 1860s by Harriet Beecher Stowe and inextricably tied up in the idea of putting someone on public display.

A little reality

In my latest for the Guardian, I take a close-up look at a story in the Washington Post Magazine about a teenage girl with dwarfism who underwent dangerous, painful surgery in order to become taller.

The Post story is an extraordinary achievement. At root, though, it stands as an argument that dwarfism is a difference that ought to be fixed. Our experience in raising a daughter with dwarfism tells us that’s exactly the wrong approach.

The vagaries of search

Yes, I’m looking for help from the brain trust again.

A year ago I published a free, online edition of my book on dwarfism, “Little People.” Unfortunately, I’ve done it in a way that renders it nearly invisible to Google.

Here’s how I handled it. I uploaded the book to a subset of my personal Web site. The top page for the book is home.comcast.net/~dkennedy56/littlepeople.html. Then I registered the domain name littlepeoplethebook.com and set it to forward to that page.

My other ventures are not exactly invisible to Google. But when I Google “Dan Kennedy” “Little People”, a link to the book doesn’t come up until the eighth page. And when I search for text inside the book, it doesn’t come up at all.

Interestingly, “Little People” is better represented on Google by Cape Cod Today, whose publisher, Walter Brooks, was kind enough to serialize my book last fall.

Yes, I know I could get a hosted solution, but I’m not willing to spend any money. Would it help if I moved the book to a higher level? (Example: home.comcast.net/~littlepeople.) I could do that, but I don’t want to bother unless it’s really going to make a difference.

Or I could set it up as a Blogger or WordPress.com site.

Thoughts?

Disability and difference

I’ve got an essay (PDF) in the current issue of ArchitectureBoston on the uneasy confluence of dwarfism, disability and difference.

Why ArchitectureBoston? Because the editor, Elizabeth Padjen, asked me. And because the assignment gives me the opportunity to discuss dwarfism as a disability that is socially constructed: take away the fact that the built environment is made for people between five and six feet tall, and the disability goes with it.

Dwarfism as disability and difference is a major theme of my 2003 book on dwarfism, “Little People.”