Definition of Dwarfism
Dwarfism is a medical or genetic condition that usually results in an adult height of four feet ten or shorter, among both men and women, although in some cases a person with a dwarfing condition may be slightly taller than that. By far the most frequently diagnosed cause of short stature is achondroplasia, a genetic condition that results in disproportionately short arms and legs. The average height of adults with achondroplasia is four feet.
According to information compiled by the Greenberg Center at Johns Hopkins Medical Center and by the late Lee Kitchens, a past president of Little People of America, the frequency of occurrence of the most common types of dwarfism is as follows:
- Achondroplasia (one per 26,000 to 40,000 births)
- SED (one per 95,000 births)
- Diastrophic dysplasia (one per 110,000 births)
These conditions are essentially untreatable, although some people with achondroplasia and hypochondroplasia have undergone painful (and controversial) limb-lengthening surgery.
Proportionate dwarfism -- that is, a short-stature condition that results in the arms, legs, trunk, and head being the same size in relation to each other as would be expected with an average-sized person -- is often the result of a hormonal deficiency, and may be treated medically. This condition is commonly referred to as growth-hormone deficiency.
Although achondroplasia accounts for perhaps 70 percent of all cases of dwarfism, there are approximately 200 diagnosed types, and some individuals with dwarfism never receive a definitive diagnosis.
Other genetic conditions that result in short stature include spondyloepiphyseal dysplasia congenita (SED), diastrophic dysplasia, pseudoachondroplasia, hypochondroplasia, and osteogenesis imperfecta (OI).
The most common forms of dwarfism are the following:
Achondroplasia
Of the estimated 200 types of dwarfism, achondroplasia is by far the most common. Achondroplastic dwarfism is characterized by an average-sized trunk, short arms and legs, and a slightly enlarged head and prominent forehead. Most achondroplastic dwarfs are born to average-sized parents, and account for somewhere between one in 26,000 and one in 40,000 births. Adults, on average, are four feet tall. Young children, especially, should be examined for such potential problems as central apnea, obstructive apnea, and hydrocephalus.
Diastrophic dysplasia
A relatively common form of dwarfism (about one in 100,000 births) first differentiated in 1960; before that, diastrophic dysplasia was thought to be a different form of achondroplasia. The condition is often characterized by short-limbed dwarfism and, in some cases, cleft palate, clubfeet, hitchhiker's thumb, and ears with a cauliflower appearance. Respiratory problems are sometimes present in infancy, but lifespan is normal. Serious orthopedic problems often require numerous surgical procedures.
Growth-hormone deficiency
Children with growth-hormone deficiency often grow normally until they are two or three years old, then fall behind their peers. Growth-hormone deficiency affects an estimated 10,000 to 15,000 people in the United States. Difficult to diagnose, it can be treated with regular injections of human growth hormone. Unlike skeletal dysplasias such as achondroplasia, diastrophic dysplasia, and SED, growth-hormone deficiency causes a short-stature condition in which a person's head, trunk, and limbs are in the same proportion as an average person. A person with this appearance used to be known as a "midget," although that term is now considered offensive.
Osteogenesis imperfecta (OI)
Between 20,000 and 50,000 Americans live with this genetic condition, which is characterized by brittle bones. There are four types of OI. Type III is a dwarfism condition, with adults generally reaching a height of three feet, although profound short stature is often associated with the other three types as well. Hearing loss is common among adults.
Pseudoachondroplasia
As the name implies, pseudoachondroplasia, like hypochondroplasia, was once thought to be closely related to achondroplasia. However, geneticists have since learned otherwise. In appearance, pseudoachondroplastic dwarfs share the same height as those with achondroplasia, but their head size is the same as that of average-size people, and they lack the facial features characteristic of achondroplasia. Children often are not diagnosed until they are two to three years old. Pseudoachondroplasia is associated with osteoarthritis and other orthopedic problems.
Spondyloepiphyseal dysplasia congenita (SED)
More commonly known as SEDc, or simply as SED, this genetic condition results in short stature, with adult height usually varying from slightly under three feet to slightly over four feet, although some adults are much taller. Other characteristics can include clubfeet, a cleft palate, and a barrel-chested appearance. SED is associated with a variety of medical problems, mainly orthopedic. SED occurs approximately once in every 100,000 births, making it, along with achondroplasia and diastrophic dysplasia, one of the most common forms of dwarfism.
Other related terms:
Double-Dominant Syndrome
A person with achondroplasia has one dwarfism gene and one average-size gene. If both parents have achondroplasia, there is a 25 percent chance their child will inherit the non-dwarfism gene from each parent and thus be average-size. There's a 50 percent chance the child will inherit one dwarfism gene and one non-dwarfism gene and thus have achondroplasia, just like her or his parents. And there is a 25 percent chance the child will inherit both dwarfism genes, a condition known a double-dominant syndrome, which invariably ends in death at birth or shortly thereafter.
midget
In some circles, a "midget" is the term used for a proportionate dwarf. However, the term has fallen into disfavor and is considered offensive by most people of short stature. The term dates back to the 1860's, the height of the freak show era, and was generally applied only to short-statured persons who were displayed for public amusement, which is why it is considered so unacceptable today.
Such terms as "dwarf," "little person," "LP," and "person of short stature" are all acceptable, but most people would rather be referred to by their name than by a label.
Next: Find out more about the etymology of the words "dwarf" and "midget". »
The information above was excerpted and adapted from the Little People of America website with their permission. Copyright © 2005 by Little People of America, Inc. All rights reserved.
The Etymology of Dwarfism
The best thing you can call our daughter is "Rebecca" or "Becky." The worst is "midget". Everything else -- "little person," "LP," "dwarf," "person with dwarfism," "achon," "hey you," -- falls somewhere in between. Before we started attending LPA meetings, my wife Barbara and I would have guessed that dwarf and "midget" were equally offensive (or inoffensive), and that little person, a term with which we were vaguely aware, was probably the most acceptable. It turns out to be a whole lot more complicated than that.
Once, at an LPA parents' meeting, I heard an average-size mother say that she nearly burst into tears of rage the first time someone referred to her dwarf child as a "midget". Why? I wondered. Before her daughter had been born, I couldn't imagine that this mother was any more capable of parsing dwarf and "midget" than we had been. Within the dwarf community, the response to what is sometimes called "the M-word" is visceral; but, obviously, it is also learned. To me, it makes more sense to educate people than it does to excoriate them for a violation of political correctness that they don't even know they are committing.
Dwarf is an ancient word dating back many centuries. In the unabridged Oxford English Dictionary (OED), the meaning of dwarf is straightforward and neutral: "A human being very much below the ordinary stature or size." The dictionary traces uses of the word as far back as the year 700. By contrast, "midget" was coined only in 1865, and its definition goes to the heart of why it is so deeply unpopular: "An extremely small person; spec. such a person publicly exhibited as a curiosity." In other words, it's impossible to think of the word "midget" without placing it within the context of the freak show, of the circus, of "midget" villages, and of Munchkins traipsing about the Land of Oz. Then, too, the root of "midget" is midge. And as the short-statured artist Jacki Clipsham puts it, "A midge is a small insect that can be killed with impunity."
For some reason, "midget" has another meaning as well. It refers only to a dwarf whose limbs are in the same proportion to his body as an average-size person's -- generally, to people whose short stature is the result of a hormonal deficiency rather than a genetic bone anomaly, as is the case with achondroplasia and other skeletal dysplasias. Because "midget" was coined at the height of P. T. Barnum's career, and because his most famous performers, Charles Stratton and Lavinia Warren, were proportionate dwarfs, it is often assumed that it was Barnum himself who came up with the word. There is, however, no evidence for that. The word "midget" did not appear anywhere in Barnum's 1855 autobiography, The Life of P. T. Barnum. In fact, he referred to Stratton repeatedly as a "dwarf."
The OED is cryptic as to the 1865 origin of "midget", attributing it to "W. Cornw. Words in Jrnl. R. Inst. Cornw." Thanks a lot! But the dictionary entry also notes that, in 1869, it was used specifically to refer to a small person in Harriet Beecher Stowe's novel Old Town Folks: "Now you know Parson Kendall's a little "midget" of a man." Stowe's usage, may, in fact, be the true origin of "midget".
I put the matter to A. H. Saxon, the author of a highly regarded biography of Barnum, and, like Barnum and Stowe, a life-long resident of Connecticut. He wrote back:
As to Barnum, to the best of my knowledge he did not coin the term "midget" &, as you know, used the word "dwarf" when referring to the Thumbs, Nutts, &c. I have seen him use the word "midget" in a few of his letters written toward the end of his life -- the 1880s -- but he must have picked it up from someone else. He was a great reader, of course, & knew the Beechers.
The deep unpopularity of the M-word is a fairly recent phenomenon. Indeed, in the freak shows of the nineteenth and early twentieth centuries, dwarf had a more negative connotation than "midget", according to the historian Robert Bogdan, because dwarfs were farther down the pecking order, and were assigned more degrading roles:
The terms "midget" and dwarf had important social meaning in the amusement world. Small people who were well-proportioned -- "perfect humans in miniature" -- in particular coveted the term "midget" for themselves as a way of disaffiliating from the more physically deformed dwarf exhibits. For midgets, who were typically cast in the high aggrandized mode, to be called a "dwarf" was like being called a "child": it was an insult. "Dwarfs" were associated with exotic freak or circus clown roles, and these roles midgets shunned.
As we have seen, the word had not fallen into disfavor even by 1957 when Billy Barty held the first get-together for dwarfs under the name "midgets of America." And when it turned out that many of the people who showed up in Reno were disproportionate, Barty's solution was to change the name to Little People of America -- not because "midget" was considered offensive, but because Barty wanted a name that both proportionate and disproportionate members, midgets and dwarfs, could accept. Soon, little people became the preferred term.
It's understandable why the newly empowered dwarf community settled on little people: it's safe, benign, euphemistic, coined at a time when people liked euphemisms. What's not entirely clear, though, is why dwarf eventually made a comeback, whereas "midget" slid into unacceptability. Certainly a lot of it has to do with the idea of being displayed in public. Dwarf is harsh, guttural, but its origins are less emotionally charged. Still, it took a younger, more politically active, in-your-face generation to popularize its use. Len Sawisch, who was involved in the creation of the Dwarf Athletic Association of America in the 1980s, says that the use of the D-word was initially quite controversial. Angela Muir Van Etten told me that the title of her 1988 autobiography, Dwarfs Don't Lie in Doll Houses, was so unpopular among some LPA members that she thinks it hurt sales. But dwarf slowly grew in acceptance to the point at which, today, it's probably more popular with people under, say, fifty, than little person is. In the 1990s some younger activists even took a stab at changing the name of LPA to reflect this new consciousness, with the American Association of People with Dwarfism being a typical suggestion. The matter was dropped because too many older members were still uncomfortable with dwarf. But the little person legacy remains something of a sore spot.
"I think that little person, to an intellectual, sounds very derogatory," says Matt Roloff, a former president of LPA. "It sounds more derogatory than the word "midget". Just instinctively, people think little person would be a demeaning term." Adds Sawisch: "Little people is just euphemistic crap. If I had anything to say about it, I would get rid of the term little people before I'd get rid of the term "midget". My compromise as a young man was to grab ahold of the term dwarf.
Certainly one reason that dwarf has grown in acceptance is that it is rarely used in a truly derogatory context. By contrast, "midget" is often used as an epithet, a derisive description. I think it's significant that when the intent is to put down a little person who also happens to be disproportionate, the M-word is what gets invoked, even though it supposedly pertains only to proportionate dwarfs. Think of "midget wrestling," a term that stuck even though most of the performers were achondroplasia dwarfs. In Massachusetts in the 1980s, a judge whose budget was getting squeezed over a political hiring dispute angrily referred to the then-president of the state senate, who was unusually short, as a "corrupt midget" -- a nickname that stuck thanks to the gleeful efforts of a tabloid columnist.
Now the dwarf community may be slowly coming full circle, embracing "midget" as a way of lessening its sting. Danny Black, an entertainer and talent agent who is an achondroplasia dwarf, has enraged many people in LPA circles by selling T-shirts featuring such phrases as midget PORN STAR and midget PETTING ZOO, the latter accompanied by a cartoon of a dwarf being patted on the head -- the sort of all-too-typical encounter with the average-size world that many LPs complain bitterly about. But despite the criticism that Black engenders, his best (indeed, practically his only) customers are dwarfs. Black says he's trying to reclaim "midget" the way more politicized parts of the gay community have reclaimed queer and the way some parts of the African-American community have made the N-word acceptable, at least among themselves. "Resignification," he calls it, the idea being that a minority group can change what an epithet means -- or signifies -- by embracing it for its own use.
Like Jacki Clipsham, Matt Roloff, and Len Sawisch, Black is uncomfortable with little people. "To me, I cringe at that," he told me. "'Little' -- a term of insignificance. A term meaning 'childlike',' a term meaning 'not as great as something big.' But at the same time we're going around saying, 'Think big, think big.' Are we denying something here? What's going on? Thinking big, but we're little people. You see Fisher-price little-people toys, little-people day care. It's childlike, it's insignificance."
Read an interesting email exchange about the M-word in this piece by Roger Ebert entitled, "Dwarfs, Little People and the M-Word" at rogerebert.com.
At the same LPA parents meeting where I heard the mother say how hurt she felt when someone called her daughter a "midget," Joan Hare -- a dwarf who runs the disability resource Center at the College of San Mateo, near San Francisco -- talked about how the language of dwarfism is evolving. Her father, she said, would get quite upset whenever he heard the M-word. Yet her twenty-three-year-old daughter, Rebecca, who's also a dwarf, uses the term "midget" with her friends. Like Danny Black, Joan Hare compared "midget" to queer and the N-word, and talked about how gays and blacks have reclaimed those words in part to drain them of their potency.
"Once you take a word back," she said, "it has no power to hurt."
Dan Kennedy is a visiting professor of journalism at Northeastern University and a contributing writer for the Boston Phoenix. His articles have also appeared in publications such as The New Republic, Salon and Slate. He is the editor of the Little People of America website. He lives in Danvers, MA with his family and can be reached through his personal Web site at dankennedy.net. This excerpt appears here with permission from the author.