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.

Discuss this on our Facebook group.

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Paul Steven Miller, a civil-rights pioneer

Paul Steven Miller

I was saddened to learn earlier this week that Paul Steven Miller, an accomplished civil-rights lawyer, had died of cancer at the age of 49. Paul was a dwarf, and in 2002 I interviewed him at the annual Little People of America national conference, which that year was held in Salt Lake City. Here’s what I wrote about our encounter in my book on dwarfism, “Little People”:

Another twist on the ambiguous relationship between dwarfism and disability can be seen in the career of Paul Steven Miller, a lawyer who is well known for his work on behalf of disability rights. Miller, a Clinton appointee to the Equal Employment Opportunity Commission (EEOC), whose term expires in mid-2004, is an achondroplastic dwarf, but his advocacy work has had little to do with dwarfism. Yet Miller learned about dwarfism as a social disability early on: despite graduating near the top of his class at Harvard Law School, he interviewed with forty-five law firms without getting a single offer.

“I was basically told by one of the lawyers at one firm that even though they didn’t have a problem with my size, they thought that their clients would think they were running a circus freak show if I was a lawyer in their firm,” Miller told me. I was so taken aback that I asked if the lawyer had really said that. “Yeah,” Miller replied evenly. “At that time it was before the passage of the ADA, it was before it was really illegal. And people were much less subtle about it.”

Eventually, Miller found work with a law firm in Los Angeles and got caught up in the disability-rights movement when he became director of litigation for the nonprofit Western Law Center for Disability Rights. His most famous client was a television news anchor named Bree Walker Lampley, who had a mild disability known as ectrodactyly, in which the bones of the fingers and toes are partially fused. A person with this condition appears to have webbed hands and feet, although in Walker Lampley’s case it did not so much as prevent her from using a typewriter.

Miller became involved when a radio talk-show host and her ill-informed callers blasted Walker Lampley for becoming pregnant with a child who might also have ectrodactyly. One caller — a Claire from Oceanside — ignorantly ranted, “I would rather not be alive than have a disease like that.” With Miller’s help, Walker Lampley filed a complaint with the Federal Communications Commission, charging that the station had violated the terms of its license by spreading hate. The case ultimately failed, but she and Miller had made their point. And Walker Lampley gave birth to a healthy son who, like her, had ectrodactyly.

Much of Miller’s practice sounds considerably more routine by today’s standards, but it was groundbreaking in the 1980s — architectural access cases, school and job discrimination, suing the California state government and local officials. “It was tremendously exciting for me and the others at the center,” he told me, “because we were just making it up as we went along.”

Miller served on Bill Clinton’s transition team in 1992 and worked as a White House liaison to the disability community until 1994, when Clinton named him to the EEOC, which enforces federal discrimination laws. On the day that I met him, at LPA’s 2002 national conference in Salt Lake City, he had just finished a breakfast meeting with the chief justice of Utah’s state supreme court. That evening, he would become the third recipient — and the first LP — to receive LPA’s Award for Promoting Awareness of Individuals with Dwarfism. Forty-one years old, balding, with owlish glasses, Miller gets around with a cane to relieve his achondroplasia-related back problems.

I asked him about his view of the relationship between dwarfism in particular and the disability-rights movement in general — a nexus where he has spent much of his life. “I think that what is beginning to happen is that the organized LPA community is really linking arms and becoming an organizational part of the greater disability community,” he replied. “I think it’s part and parcel of the identity of LPA changing over the past five years or so, and of LPA having, not an identity crisis, but sort of morphing its identity into something larger than the social club that it may have been a number of years ago. I think it’s fair to say that LPA as an organization is not really an active player in the broader disability movement at the national level. But I think that that’s the direction we’re headed in.” He added: “I think it would be fair to say that I have always really connected the two experiences, both in my mind and my career.”

Paul was a great friend of the dwarfism and disability communities, and there has been an outpouring of affection for him on LPA’s Facebook page. He was a man of many accomplishments, and he will be missed.

Photo via the University of Washington School of Law.

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Come as you are

The Nashua Telegraph today has a nice feature on Camp Come As You Are, a weekend program for people with dwarfism and their families held every year since 2006 at Camp Allen in Bedford, N.H. The story was written by Jake Berry and photographed by Bob Hammerstrom.

The camp — known as Camp CAYA — got started because our friend Ruth Ricker and my wife, Barbara Kennedy, got sick of driving to western Pennsylvania every summer in order to take part in a camp program there. Barbara, our daughter, Becky, and Ruth and her son, Janis, both dwarfs, had a lot of time in the car to think about how to set up something closer to home.

For several days, everyone gets together for swimming, boating, crafts and other activities. It’s a great opportunity for kids with dwarfism to get to know other kids with their condition.

Barbara took the banner photo that appears at the top of this website at Camp CAYA in 2008. I was able to track down most of the people in the photo, and they all gave me their enthusiastic permission to use it.

This year we had the best weather in the five years of the program. I didn’t stay over, but I headed up on Saturday for a cookout, a talent show and a camp fire. It was great fun.

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A man on the move

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 this site 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.

And be sure to check out Young’s blog.

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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.

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Print-on-demand edition now available

Little People is now available in a large-format (six inches by nine inches) paperback edition via the print-on-demand service offered by the Harvard Book Store of Cambridge, Massachusetts. Complete with a new introduction, this edition is available for $16 plus tax, handling, and shipping.

To order your own copy of Little People, please click here.

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