Little People

"Little People": Chapter Four - The Valley of the Shadow of Death

Little People Chapter Four
The Valley of the Shadow of Death

WHEN BECKY CAME home from Mass General, it was to a room that had been utterly transformed to cater to her new, intimidating needs. Rather than the small upstairs bedroom that we'd set aside for her, we rearranged what had been a large guest room on the first floor. A metal shelving unit held an oximeter, a wire from which we would attach to one of her big toes whenever she was sleeping; if the ideal oxygen level in her blood fell below 95 percent, an alarm would go off, and we would rush in to see what the problem was. If it fell below 90, it was time to think about getting her to the hospital. There was a suction machine to remove mucus and phlegm from her trach tube, a procedure we had to perform dozens of times a day. A basket filled with little plastic containers of saline solution, which helped to loosen the mucus. Extra trach ties. An enormous humidifier that delivered heated mist to her trach opening. A big green oxygen tank for home and a little portable oxygen tank for road trips.

And there were people, lots of them. Home nurses, wonderful women who were with us for as much as eighteen hours a day at first, tending to Becky while we slept, showing us the nuances of how best to meet her needs when we were awake. Technicians from a medical-supply company, miserable human beings who seemed not to know or care what they were doing. Occupational and physical therapists, well-meaning people who'd let their narrow areas of expertise somehow transmogrify into a condescending, we-know-best attitude that left us perplexed and infuriated.

What was most important about all of this, though, was that Becky herself was taken seriously. When she was first diagnosed with achondroplasia, the message was consistent: She'll be fine. During her two months in Mass General, we were told: She'll be fine, once she gets through this. And after she came home, it was: She'll be fine, you just need to be patient. A generation or two ago, the parents of a child just diagnosed with dwarfism were sometimes told that their baby might not live long (true enough in some cases), or could be mentally retarded, or might even be better off in an institution. By contrast, everyone we dealt with, even the ones we didn't like, took Becky's difference as a given, and treated her dwarfism not as a problem unto itself, but rather as a complication that made it difficult for her to breathe, or pick up a stuffed animal, or roll over, or sit up. Get her through all that, and yes, She'll be fine.

It's an attitude that's made all the difference in her life. And it's an attitude that would be inconceivable were we not a society that accepted difference--if not perfectly, if not in all cases, then at least to a far greater extent than we did a hundred years ago, when freak shows were giving way to science, and science, all too often, abandoned the pursuit of truth in favor of crackpot theories about genetic superiority that reflected nothing so much as the prejudices of those who espoused those theories. In the 1930s and 1940s these theories reached their logical, and terrible, conclusion in Nazi Germany, where conformity was held up as the highest ideal and difference was seen as something to fear, and to eliminate.

In a very real sense, the disability consciousness that came into being in the second half of the twentieth century, and which has done so much to enhance Becky's life and improve her prospects, sprang from the ashes of death camps such as Auschwitz and Dachau, where millions of innocent people met their fate. And at a little-remembered camp called Mauthausen, where one man's life and death symbolizes the horrifying consequences of regarding human difference as pathology.

***

HE LOOKS AT the camera straight on. He is dressed in the striped prison garb of the Mauthausen concentration camp, in Austria. His face--grim but dignified, almost serene--betrays a terrible awareness. He knew what was coming next.

Sixty years ago Alexander Katan stared into the lens of a Nazi photographer's camera. Today he stares into the eyes of anyone who visits a Web site that documents his final moments. Move the cursor on top of his picture and it's replaced by something else: a skeleton, obviously that of a dwarf with limb deformities, propped up like a curiosity in a display case. It is the skeleton of Alexander Katan.

After poking around the Internet and gleaning a few details about Katan's life and death, I wrote to the Mauthausen Memorial Archives, hoping to learn more. In response, I received a letter from Dr. Doris Wagner, an official with Austria's Federal Ministry of the Interior. Katan, she wrote, was born in Rotterdam on November 18, 1899. After Germany overran the Netherlands, Katan was registered as a "Dutch Jew" (Jude NL). He was arrested and brought to Mauthausen on or about November 3, 1942. On January 27, 1943, camp officials ordered him killed with an injection to the heart--the better to preserve his remains--so that his skeleton could be displayed and photographed. Wagner did not say how the flesh was so neatly stripped from Katan's bones, leaving behind nothing but a perfect skeleton. But mostly likely his dead body was dipped in a vat of caustic chemicals.

Wagner's letter included images of some actual records pertaining to Katan's imprisonment and death. The cause of death was described as Eitriger Dickdarmkatarrh, or ulcerative colitis. Wagner's letter noted with clinical dispassion that "the given cause of death does not necessarily correlate with the actual reasons for the prisoner's demise."

But illogical though the diversity model of disability may be, it has enormous worth in terms of politics and culture. Treating disability as though it were like race, sexual orientation, or religion--as something to be tolerated, accepted, protected, even celebrated--helps make this a more dignified, open, and just society.

Katan was not taken to Mauthausen because he was a dwarf, but because he was a Jew. Nor was he killed because he was a dwarf. The complex of camps that comprised Mauthausen, though not as well-remembered today as Auschwitz or Dachau, was a place of unimaginable cruelty, and only a small fragment of what went on was aimed at those who were physically different. An estimated 150,000 people were killed. Some were ordered to remove their clothes in subzero temperatures and then sprayed with water, freezing them to death. Some were hacked to pieces by pick-wielding sadists. Some were simply starved, left lying in pools of excrement until they stopped moving and, finally, stopped breathing.

But though Alexander Katan was imprisoned and killed because he was a Jew, the particular way in which he was killed--and the way his remains were displayed, ogled at, desecrated--had everything to do with the fact that he was a dwarf. The Nazis were obsessed with physical differences, seeing them as signs of weakness, of genetic impurities that needed to be stamped out. Such differences in a Jew were evidence--confirmation--of Nazi ideology, which held that Jews were racially inferior to the blond-haired, blue-eyed "Aryans" who were held up as the ideal of pure Germanic blood.

Perhaps Katan was killed on the orders of Dr. Eduard Krebsbach, who was reportedly the first Mauthausen physician to use heart injections to execute inmates whom he considered sick or otherwise unfit. Krebsbach's notoriety was such that he was nicknamed "Dr. Spritzbach"--that is, "Dr. Injection." His tenure at Mauthausen was cut short after he was caught shooting a hard-partying German soldier on holiday who, along with his friends, had disturbed the good doctor's rest. But Dr. Injection and his fellow physicians left behind quite a legacy: 286 specimens of human organs, a collection that the camp assembled in collaboration with the SS Medical Academy, at the University of Graz. According to one account, the collection included "hearts, lungs, kidneys, faces, skeletons, and skulls" of inmates, murdered by heart injection "to preserve their anatomical 'anomalies.'" The attractions also included an album of tattooed skin, as well as lampshades and furniture made out of human remains.

The story of Alexander Katan, in many respects, traces our cultural attitudes toward difference in the first half of the twentieth century. Gradually, disability's place in social consciousness moved from the freak show to the laboratory, and not always for the good of the disabled. Under the guise of the then-new pseudoscience of eugenics, physical differences such as blindness, deafness, mental retardation (or "imbecility," as it used to be known), and the like were seen as something to study, to classify, to categorize. And to eliminate.

Dwarfism--as it had always been, as it is today--was seen as somehow different from other disabilities. There is no record of dwarfs having been specifically targeted by the eugenicists. Nor is there any evidence that dwarfs who were both healthy and mobile were considered disabled, not even by the Nazis. Yet as Katan's fate shows, dwarfs were not put in quite the same category as the able-bodied, either. Left alone in normal times, they were singled out for their difference during moments of social breakdown and cultural madness. Some, like Katan, suffered a fate worse than that of their average-size peers--worse not because he was killed (after all, he was hardly alone in that), but because of the way he was mocked even after his death. Some were allowed to live because they were different--as was the case with the Ovitzes, whom I will discuss later in this chapter, a family of Jewish dwarfs who survived Auschwitz only because the infamous Josef Mengele saved them for his experiments.

The identity politics that has come to define the disability community in recent decades is, in a sense, a direct, ongoing response to the eugenics movement, and to the ugly end to which it came in the 1940s. They include the deaf activists who label cochlear implants "genocide"; the wheelchair-users who rail against Christopher Reeve for seeking a cure for his quadriplegia rather than raising political consciousness; and the parents who changed the term mongoloidism to Down's syndrome and then later insisted that the possessive be dropped, lest it appear that those with the of the condition somehow were the property of the physician, Dr. J. Langdon Down, who first described it. Identity politics has also had an effect on the organized dwarf community, which at first rejected the disability label and then later embraced it as a way to advance its agenda of acceptance and access.

The overarching message voiced by all these activists is that disability is a difference, not a defect, and that difference is to be celebrated. From a purely scientific point of view, their logic is dubious. As Becky's pulmonary specialist, Dr. Dan Shannon, once told me, it makes no more sense to place a positive value on dwarfism than on diabetes. Is someone whose pancreas can't produce enough insulin an example of the rich tapestry of human diversity, or would her life instead be enhanced by the elimination of such diversity--that is, by a cure? The answer is obvious.

But illogical though the diversity model of disability may be, it has enormous worth in terms of politics and culture. Treating disability as though it were like race, sexual orientation, or religion--as something to be tolerated, accepted, protected, even celebrated--helps make this a more dignified, open, and just society. Treating it as a defect to be stamped out is divisive and deadening. At its worst, it leads to a display case in Mauthausen, where Nazi officials and doctors--members of the most thoroughly Nazified of all the German professions--peered thoughtfully at the skeleton of a deformed little man, the flesh stripped from his bones in just the right way so as not to interfere with their edification and amusement.

***

EUGENICS WAS THE bastard child of evolution and genetics. Charles Darwin's Origin of Species, published in 1859, introduced such ideas as natural selection and the survival of the fittest. The development of living things was removed from the realm of theology and transferred to that of science. Humans were not made in God's image--not directly, anyway--but, rather, evolved from ape-like ancestors millions of years ago, becoming more intelligent over time because intelligence gives humans an advantage over their competitors: predatory animals; the elements; and, most provocatively, less intelligent, and therefore less evolved, fellow humans.

Most scientists today believe that evolution is quite a bit more complicated and random than the onward-and-upward path described by Darwin, which bespoke a faith in progress every bit as theological, in its way, as the story of the Garden of Eden. In its time, though, Darwin's theory of evolution had an explosive effect. The notion that humans are evolving into an ever more intelligent and powerful species was as dangerous as it was exhilarating.

A cruel political philosophy known as Social Darwinism became popular in the latter half of the nineteenth century. Its adherents believed that the poor were responsible for their plight, and that they were somehow inferior, from an evolutionary point of view, to those who were more successful. Worse, Social Darwinists believed that society should refrain from helping the poor, because all they would do is reproduce and drag humanity down the evolutionary ladder with them. Those whites who had never accepted blacks as fully human now claimed to have additional evidence, arguing that blacks had not risen as far from apehood as whites had. In pop culture, to cite just one example,

P. T. Barnum exploited the public's hazy understanding of evolution by displaying a microcephalic black man named William Henry "Zip" Johnson, whom he billed as "What Is It?" and described as the missing link between humans and orangutans.

Eugenics was the scientific--or, rather, pseudoscientific--counterpart to Social Darwinism. Fittingly enough, it was first promulgated by a cousin of Darwin's, Sir Francis Galton, who came up with the word and defined its purpose: to encourage those humans who were supposedly more evolved to reproduce as much as possible, and to discourage the lower sorts from breeding at all. His ideas about superiority matched up conveniently with his own ethnicity and social class. Though Galton was gifted enough as a scientist to develop the modern method of fingerprint identification, he could also be so sloppy and prejudiced that he actually sought to support his eugenics theory with data showing that successful people tend to be related to other successful people, as though that were the result of anything other than environment. (Then again, it's not as though those ideas have gone away entirely. Witness those who argue that the poor performance of black children on standardized tests is evidence of intellectual inferiority rather than differences in family history and opportunity or a cultural bias in the tests themselves.)

Darwin's theory of evolution was a necessary but not wholly sufficient basis for eugenics. The other element was genetics--the discoveries of Gregor Mendel, the obscure Austrian monk whose experiments with peas showed how inherited characteristics were handed down from one generation to the next. Eugenics, then, was a toxic combination of Darwin's theory of the survival of the fittest and Mendel's ideas about the mechanics of heredity. As Simon Mawer writes in his fine, quirky 1998 novel, Mendel's Dwarf, "It was a science that would ultimately lead to the ovens of Auschwitz."

Though eugenics reached its apex in Nazi Germany, it found a receptive home early on in the United States. Perhaps this is not surprising, given our belief in science and progress and self-improvement. Gradually, public display of the disabled came to be seen as barbaric. As Howard University's Rosemarie Garland Thomson writes, "Looking at disability became inappropriate in the same way that public executions and torture came to be considered offensive by the nineteenth century." It was around this time, Thomson observes, that the bleeding figure of Jesus began to disappear from the Protestant cross, a change that was emblematic of the "banishment of the image of disability." The medicalization of disability, she adds, led to another, even more disturbing shift in cultural attitudes: rather than being viewed as "natural wonders," the disabled came to be seen as something that was broken and therefore had to be fixed. Or cast aside. "The logic of 'cure or kill,' accompanied by today's faith in technology," writes Thomson, "posits that if the disabled body cannot be normalized, it must be eliminated."

Among the earliest, and weirdest, proponents of such elimination was Dr. Harry Haiselden, a young surgeon from Chicago who burst on the scene in 1915 when he told the Chicago American, a mass-market Hearst newspaper, that he had let a disabled newborn baby die. Like a proto-Jack Kevorkian, Haiselden was investigated three times for refusing to save the lives of disabled infants. Unlike Kevorkian, he evaded official censure. Ultimately, though, he was kicked out of the Chicago Medical Society for espousing his views in newspaper articles and for making a bizarre and disturbing movie called The Black Stork. Its message was not subtle. The mother of a disabled newborn must decide whether to let a surgeon save her baby, or to let him die. She has a vision: her surgically repaired child grows up to become a criminal who has disabled kids of his own. Ultimately, he tracks down the doctor who saved his life and kills him. Mom makes what was, from Haiselden's point of view, the right choice. As the film moves toward its conclusion, a faint image of Jesus is superimposed in the background, and the child's soul leaps into his waiting arms.

In the early part of the twentieth century, the United States led the world in putting eugenics theory into practice. It has been estimated that more than thirty thousand people were systematically sterilized in twenty-nine states--about half of them in California--between 1907 and 1939. These sterilizations were aimed primarily at mentally retarded or mentally ill people living in institutions and prisons, sometimes without their knowledge, sometimes against their will.

A particularly notorious case involved an eighteen-year-old woman named Carrie Bruck, who was living in an institution for the "feebleminded" in Virginia. As described by the disability historian Joseph Shapiro, Bruck was the middle actor in a multigenerational tragedy: she had just given birth, and her mother was warehoused in the same institution. It's likely that their real disability was poverty rather than any sort of mental deficiency, according to Shapiro. Nevertheless, state officials sought forcibly to sterilize Carrie Bruck, and the United States Supreme Court agreed. Wrote Justice Oliver Wendell Holmes Jr. in the 1927 opinion: "It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. . . . Three generations of imbeciles are enough!"

By comparison, Germany had a lot of catching up to do--so much so, according to the historian Robert Jay Lifton, that a German geneticist named Fritz Lenz complained in 1923 that Germany was lagging well behind the United States in sterilizing its undesirables. The Weimar constitution, Lenz noted with disdain, forbade alterations to the human body, a category that included vasectomies. Worse, he complained, the country had no laws to prohibit people with disabilities such as mental retardation or epilepsy from getting married. That would soon change--and Lenz himself would become a top official in Nazi Germany's eugenics programs.

It did not take long for Germany to assume a leadership position. Lifton makes an important point about the difference between the United States and Britain (another leading center of enthusiasm for eugenics) on the one hand and Germany on the other. The United States and Britain, with their open political systems and ingrained respect for individual rights, had self-correcting mechanisms in place that held the eugenic impulse at least somewhat in check. In Germany, where the Nazis quickly established a totalitarian state after rising to power in 1933, eugenics was imposed forcibly from above. Hitler himself once said that the state "must see to it that only the healthy beget children. . . . It must declare unfit for propagation all who are in any way visibly sick or who have inherited a disease and can therefore pass it on." His deputy, Rudolf Hess, put it more simply: "National Socialism is nothing but applied biology."

This applied biology took the form of two programs: mass sterilizations, which began in 1934, and direct killing--"euthanasia," as it was euphemistically called--which began in 1939. Using these means the Germans eliminated what they called lebensunwerten Leben--"life unworthy of life." The "euthanasia" program, in particular, was a dress rehearsal for the Final Solution. As the physician-murderers refined their techniques, they eventually hit upon an efficient system for doing away with the institutionalized disabled who were supposedly under their care: they would kill them with gas, then burn their bodies in a crematorium. The so-called euthanasia program was supposed to be kept a secret, but German opinion became inflamed as fact and rumor began to spread. In 1941 Hitler officially ended it, although it continued surreptitiously until the end of the war. The killing technology--the gas equipment and the ovens--were simply packed up and shipped to the death camps, where six million Jews and millions of others met their fates.

Overall, it has been estimated that between 300,000 and 400,000 people were sterilized during the Nazi era, and perhaps as many as 200,000 to 250,000 were killed under the various "euthanasia" programs.

But as terrible as these crimes were, it appears that dwarfs were largely spared. Sterilization and "euthanasia" were aimed almost exclusively at severely disabled people living in institutions. Above all, the Nazis were obsessed with mental conditions. Schizophrenia, epilepsy, manic-depressive illness, mental retardation, and the like accounted for well over half the cases of those who were murdered. Dwarfism was not mentioned in the list of physical conditions that the Nazis sought to eliminate, such as hereditary blindness or deafness. Certainly some severely disabled dwarfs already living in institutions may have been killed, since they would have been considered "life unworthy of life." But there is no evidence that healthy German dwarfs, living and working alongside their average-size fellow citizens, were singled out in any systematic way for sterilization or death. Still, there may have been exceptions.

The disability historian Hugh Gregory Gallagher has written in considerable detail about precisely which mental and physical disabilities the Nazis targeted for elimination, and although the list does not include dwarfism, he mentions dwarfs' being killed almost in passing. When I contacted Gallagher, he told me he had no specific documentation. But that doesn't mean that no dwarfs were targeted. Gallagher writes that, at its worst, "euthanasia" was meted out to anyone who didn't conform--a category far-reaching enough to encompass children in orphanages who had bad skin. Or bad attitudes. It seems possible that some dwarfs were victimized during this time simply because of their dwarfism, perhaps under the guise that they had severe hereditary physical disabilities, a catchall category that the Nazis also made use of. What really happened, though, remains a mystery.

One afternoon I paid a visit to the United States Holocaust Memorial Museum, in Washington, D.C., to interview Patricia Heberer, a historian of the Nazi war against the disabled. I was accompanied by Cara Egan, a woman with achondroplasia who has studied the role of the dwarf community in the disability-rights movement. "There's no consistent targeting of dwarfs or little people for the 'euthanasia' program,'" Heberer told us. "'Euthanasia' doesn't go beyond the bounds of the custodial setting. What they're doing is getting rid of a population in an institutional setting, and they're not concerned with people who can function, or who are outside that."

Afterwards, Andy Hollinger, a museum official, took Egan and me to an exhibit on the fate of the disabled under the Nazis. We saw a miserable little bed, body restraints, a physician's smock. Behind all this was an enormous photo of the crematory smokestack at the Hadamar mental institution, belching out the ashes of human remains--the setting for a surreal celebration of speechmaking and beer-drinking, vividly described by Hugh Gallagher, upon the occasion of the ten thousandth victim's death. There were photos, too, of mentally retarded children just before they were killed, of buses with the windows painted over so that no one could see in or out, of a doctor examining the body of a child who'd been "euthanized," supposedly so that he could study the genetic basis of disease.

Particulars are important. It's worth knowing whether dwarfs were or were not singled out by the Nazis. But it's even more important not to lose sight of the overarching horror of what took place.

***

LIEBE PERLA ("Dear Perla"), a 1999 film by the Israeli documentarian Shahar Rozen, is deceptively low-key. Its subject is a ten-member family of Hungarian-Jewish entertainers--seven of them dwarfs--who survived Auschwitz because of Josef Mengele's perverted curiosity. One of the survivors, an elderly dwarf named Perla Ovitz, is interviewed in her Haifa home by a German researcher, Hannelore Witkofski, who is herself disabled. Near the beginning of the film, Ovitz makes what the narrator calls "an unusual request." During their time in Auschwitz, Mengele had ordered the entire Ovitz family to be photographed naked. Perla Ovitz asks Witkofski to find the photo and bring it to her so that it can't be viewed by anyone else.

We follow Witkofski as she tries to track the photo down, in German archives and at the Auschwitz memorial. Apparently it is lost forever. What we do see, though, is profoundly chilling.

At one point we see a film clip of Jews being herded into Auschwitz, a dwarf clearly visible. At another, Perla receives word from Yad Vashem, the Holocaust memorial in Jerusalem, that her family's musical instruments have been found; she and Witkofsky make an emotional trip to see, to touch, the instruments upon the latter's return to Israel. Then there is Perla's ambivalence about Mengele--an ambivalence that is shocking given the evil he did to her family and to countless thousands of others. She recalls Mengele's eyeing the seven dwarfs when they arrived at Auschwitz and saying gleefully, "I've got work for twenty years." She remembers thinking: "God, I don't want to live twenty years." Yet she could not let go of the notion that it was Mengele who had saved them, that it was his interest in their dwarfism that allowed them to live. She tells Witkofski that she cried when she learned Mengele had died in Uruguay. "I can't say anything bad about him," she says. We see her nephews arguing with her, telling her it is unimaginable that she could hold such views about a monster such as Mengele.

In an interview with the journalist Yehuda Koren published after the film was released, Ovitz offered more details. She said that shortly after arriving at Auschwitz, her family was actually dragged off to the gas chambers against Mengele's orders. He rescued them, giving them milk so they would vomit out the poison that had already entered their bodies. They were poked and prodded, injected and inspected; Mengele took blood, marrow, teeth from them, but he never took their lives. "We were the only family who entered a death camp and emerged together," she told Koren. "If ever I questioned why I was born a dwarf, my answer must be that my handicap, my deformity, was God's way of keeping me alive." Mengele, she recalled, even made up a rhyme that he would chant: "Over the hills and seven mountains, there my seven dwarfs do dwell." After the war ended, they performed in Israel as the "Seven Dwarfs of Auschwitz."

For some in the dwarf community, it is an article of faith that the Nazis sought to eliminate all dwarfs. As Rika Esser, an official with BundesselbsthilfeVerband Kleinw¸chsiger Menschen, the German little people's association, said to me in an e-mail, "I read quite a number of books on the Third Reich in general, and the fate of short people was only mentioned as a footnote, if ever. But: since the goal of the regime was to keep the 'German genes' as much Aryan (TALL, blond, blue-eyed) as possible, and since this is not reconcilable with being short, I guess that this in itself is a reason to prosecute dwarfs." Indeed, after I saw Liebe Perla at a screening with a couple of dozen Little People of America members, there was a heated discussion about that very topic. One person went so far as to say that, after World War II, there were few dwarfs left in Europe because Hitler had killed nearly all of them. There is no evidence of that--not in Robert Jay Lifton's or Hugh Gregory Gallagher's books, and not in any of the voluminous records that the Nazis kept about their evil deeds. Patricia Heberer, the Holocaust Museum historian, told Cara Egan and me that the dwarfs who were sent to the death camps were Jews, or perhaps members of some other persecuted group, mainly the Roma, better known as Gypsies.

In fact, Liebe Perla underscores the uniquely Jewish character of the Holocaust. Perla Ovitz told Koren that she and her family were able to continue touring and performing for several years during the war because they had hidden the fact that they were Jews. After Germany invaded Hungary, she recalled, "the Nazis gave us a hand, lifted us onto the packed train, and helped us find some space." Only later, when the authorities learned that the Ovitzes were Jews, were they sent to Auschwitz. Alexander Katan's papers identified him as a "Dutch Jew," and made no mention of his dwarfism. The same was presumably true of Lya Graf, a Jewish dwarf who performed in American circuses in the 1920s and 1930s and who became briefly famous when she was photographed sitting in the lap of the financier J. P. Morgan. Graf and her parents returned to their native Germany in the 1930s, and she died, along with her parents, at Auschwitz in 1941.

In her 1985 memoir of her time in Auschwitz, Sara Nomberg-Przytyk tells a story about a family of dwarfs that is almost unbearable to read. It is about another family of Hungarian-Jewish entertainers, circus performers in this case, comprising three dwarf women, two average-size women married to dwarfs, and a three-year-old boy who was the son of a dwarf but who was apparently average-size himself. The family members slobber all over Mengele, thanking him for saving them, but he will have none of it. Instead, he is inflamed with demented curiosity over their sex lives, particularly between the average-size women and the dwarf men. "You will tell me if the little one is the midget's son, or did you have him with somebody else?" he leers. Later, he takes the three-year-old and dissects him, while still alive. "Without blinking an eye," Nomberg-Przytyk writes, "Mengele was inflicting physical agonies on a three-year-old child who had not the least understanding of what was happening." The boy died that night.

So much has been written and said about Mengele that it is hard to know what more can be added. In reading about his life and career, two things struck me in particular. The first was his basic lack of intelligence. Mengele is often portrayed as some sort of evil genius, as in Gregory Peck's depiction in the 1978 film The Boys from Brazil. But as Gerald Posner and John Ware make clear in their biography of Mengele, the Angel of Death was really a hardworking B-student type who had convinced himself that his sadistic and worthless experiments--especially on twins, but to a lesser extent on dwarfs and others--would win him a university professorship after the war.

The other aspect of Mengele's personality worth noting was his simultaneous kindness and cruelty toward his victims, a quality that is sometimes cited as evidence of deep psychological problems. He may well have had such problems, but it seems more plausible to me that he was just evil. Having already thoroughly dehumanized his subjects, he simply thought of them as laboratory mice. A good scientist will keep his mice warm and well-fed, and maybe even murmur sweet nothings into their little ears from time to time. But that's not going to stop him from poking their eyes out, injecting them with poisons, and cutting them open when they're still alive so that he can see the effects of his experiments.

It is not entirely clear why Mengele was interested in dwarfs. Twins, yes: he wanted to learn the secret of multiple births so that he could help the German race multiply. But why dwarfs? It's thought that he saw dwarfism and other physical disabilities among Jews as evidence of racial inferiority, although that raises the question of what he made of Germans with the same conditions. He was also short himself, and on one occasion he reportedly drew a line on a wall in the children's block--at about the five-foot-two mark--with everyone under the line being sent to the gas chambers and those over it allowed to live another day. Was there a connection in his mind between his own mild short stature and the profound short stature of the dwarfs whom he tortured?

Within the dwarf community, one of the most celebrated books of recent years is Ursula Hegi's 1994 novel, Stones from the River. The lead character, Trudi Montag, is an achondroplastic dwarf--a Zwerg--whose life we follow from World War I until just after World War II, from childhood to early middle age. In literary terms, Trudi's dwarfism serves to make her a permanent outsider--a keen observer who is in, but never quite of, her time and place. Only once does her dwarfism put her at risk, even though other people with disabilities have disappeared from her village, never to be seen again. She is taken prisoner, and fears it is because the authorities have learned that she and her father have been hiding Jews in their basement. It turns out that she had been picked up because of an offhand remark she'd made, and, after three weeks, she is released--but not before this exchange with a Gestapo officer:

He said: "The rules that used to temper curiosity no longer exist."

She waited, confused.

"Do you understand what I say?"

"No."

"You should. Don't you know what can happen to someone like you in our country?"

The Buttgereit boy . . . the man-who-touches-his-heart . . . the Heidenreich daughter . . . No, she was not like them.

"You become an experiment . . . a medical experiment for the almighty profession," he said, and told her of operations performed on twins, on people afflicted with otherness. "Because the rules that used to temper curiosity no longer exist . . . Some people might even tell you that a Zwerg has no right to live."

She felt her back seize up on her. Bracing herself against the familiar heaviness at the base of her spine, she asked, "And you? Is that what you believe?"

He looked at her, evenly, and she read in his eyes what she'd known four years before--that he didn't believe in anything or anyone.

In such a context it hardly matters that dwarfism was not among the differences that had been singled out as no longer being bound by "the rules that used to temper curiosity." It could be used as a threat. If today the deaf were at risk of being exterminated and dwarfs were not, well, what of tomorrow? And what would happen to someone like Trudi if she fell afoul of the authorities because of her opposition to the Nazis?

There were, after all, Germans who ended up at the death camps, too--political dissidents, gays and lesbians, and various and assorted misfits. If Trudi had been taken to Auschwitz for her political beliefs, forced to labor beneath the metal gate emblazoned with Arbeit Macht Frei ("Work Brings Freedom"), well, what would have happened to her then? Would she have fallen into Mengele's clutches? Would she have been killed under the 14f13 program, in which physicians who were veterans of the "euthanasia" movement were sent to the death camps to weed out those who were physically unable to perform their share of the work?

***

IN THE CREMATORIA of Auschwitz and Mauthausen and the other death camps, millions died--and an ideology died as well. A half-century of trying to eliminate difference reached its logical, terrible conclusion. In the nineteenth century, the disabled were displayed as freaks of nature. In the first part of the twentieth, they were regarded as contaminants in the gene pool. Eugenics, finally, was exposed as the fraud and the evil that it was.

In 2000, the Dutch documentarian Hedda van Gennep made a film called Dood Spoor? ("Dead End?"), with a subtitle that translates as "A Son Seeks His Father." Van Gennep tells the story of Alphons Katan, Alexander Katan's son, and his successful quest to persuade officials at the Mauthausen Memorial to remove photographs of his father, several of which were taken after he had been stripped of his clothes. We learn some details of Alexander Katan's life--of his work as a tutor, of his strict observance of the Sabbath, of his and his wife's arrest and imprisonment. Alphons Katan's story is moving, even heartbreaking. But I cannot agree with his crusade. We must bear moral witness, even when it's painful, even when it's intrusive, even when we might rather look away. Think of the haunted faces in those images from the killing fields of Cambodia, or of the piled-up bodies outside the churchyard in Rwanda. Avoiding the true nature of evil only increases the chance that it will happen again.

The photographs that were taken of Alexander Katan in his last moments are more than a document of one man. They are a message, a warning of what happens when we turn human variation into pathology, difference into defect--when we look at a person with a disability and see only the disability.

Alexander Katan belongs to the ages. He belongs to us, if we're capable of understanding what he's telling us.

Above image: Becky at Mass General, December 1993. Copyright © 1993 by Dan & Barbara Kennedy

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"Little People": Chapter Three - Just Like Tom Thumb's Blues

Little People Chapter Three
Just Like Tom Thumb's Blues

ON AN UNSEASONABLY cold March morning, many years after Becky's precarious start had given way to a blissfully uneventful childhood, I drove to the Middleborough Historical Museum, which consists of two small red houses just outside the downtown of the small town in southeastern Massachusetts from which it takes its name. I'd grown up in Middleborough and had visited the museum any number of times during my childhood. As kids, we had called it the Tom Thumb Museum because of its display of memorabilia on the lives of Charles Stratton--a.k.a. Tom Thumb--and his wife, Lavinia Warren, who is Middleborough's best-known native daughter. I had come to see it again, for the first time in probably thirty-five years, not as a child marveling over the two tiny folk, but as the father of a dwarf, both curious about and repelled by the notion of little people being put on public display.

Gladys Beals, a thin, gray-haired elderly woman with a friendly and welcoming manner, was waiting for me. The museum operates on such a shoestring that it is open only from July through October. During the other eight months you have to make an appointment. The building was unheated and cold enough that we could see our breath. Mrs. Beals led me through three rooms devoted to General and Mrs. Tom Thumb. She pointed out such artifacts as a photograph of the mansion that the Strattons had built in Middleborough (still lived in, though long since retrofitted for average-size occupants), a black gown that Lavinia wore to an audience with Queen Victoria, books, gloves, shoes, roller skates, and a stereoscope with a three-dimensional photo of their wedding in New York City, one of the premier social events of the 1860s.

Mrs. Beals explained that she had become interested in Charles and Lavinia during the thirteen years that her late husband, Robert, had been head of the historical society. "We became so enamored of the little people," she said. "When we came in, we said, 'Hi, kids,' and when we left, we'd say, 'Bye, kids.'" She made it clear that she admired the Strattons, and she emphatically defended P. T. Barnum, the legendary nineteenth-century showman, against charges that he exploited his two most popular attractions. "He did it in a very, very fair manner," she said. (That does, in fact, appear to be the case. By all accounts, the Strattons shrewdly exploited themselves, and Barnum gave them the means by which to do it.) Mrs. Beals saw nothing wrong with the Strattons' making a public spectacle of their physical difference in order to earn a living. During my own childhood visits to the museum, it had never occurred to me that there might be something wrong with it either. Of course, that was a good twenty-five years before Becky's birth raised philosophical issues for me that most people never have a reason to think about.

The Strattons represented the pinnacle of a time when dwarfs were treated as public curiosities, as wonders of nature. And though this phenomenon has not disappeared entirely, today we have a very different attitude toward dwarfism. We recognize it as a medical condition and consider it to be either a genetic flaw or a difference worthy of recognition and protection, like race or sexual orientation. People still stare, of course, as they stared at Becky during our Labor Day trip to Story Land. The difference is that today the stare is directed not at a person on display, but rather--or so I hope--at someone trying to go about her business just like anyone else.

***

AMONG THE FIRST examples of a dwarf being put on display for the amusement of the paying public was that of an anonymous Dutchman, who was observed in 1581 by the English tailor and antiquarian John Stow and described in his Chronicles of England. As recounted by Hy Roth and Robert Cromie in their 1980 book, The Little People, the dwarf, who was three feet tall, was displayed in London alongside a seven-foot-seven giant. The larger man was hobbled by a stunt gone bad, having broken both legs in the course of lifting a full beer barrel. The dwarf, who was also lame, performed such tricks as dancing and walking upright between the giant's legs, feathered hat and all.

It was within this dubious tradition that Charles Sherwood Stratton and Mercy Lavinia Warren Bump Stratton Magri launched their oddly spectacular careers.

Charles Stratton was born on January 4, 1838, in Bridgeport, Connecticut, to parents of average height--or, as an 1863 pamphlet on the Strattons' marriage put it, "His parents were persons about whom there existed no peculiarity, either in mental or physical organization." His mother attributed her son's dwarfism to the grief she had experienced when the family dog died during her pregnancy.

Charles never had a say over the direction his life would take. When he was just five years old, his parents allowed another son of Bridgeport, P. T. Barnum, to take him to New York City and put him on display at his American Museum. The museum showed everything from middlebrow plays for family audiences--Barnum went so far as to edit the sex out of Shakespeare--to such oddities as a "mermaid" consisting of a monkey's head sewn onto a fish's body. Barnum changed Charles's age from five to eleven in order to exaggerate his short stature, gave him the name Tom Thumb after a legendary member of King Arthur's roundtable, and trained him to do such tricks as imitating Napoleon and engaging in mock battle, with Barnum as Goliath and Stratton as David.

Stratton was two-foot-eleven at the age of twenty-five, but grew slightly more as he got older. His dwarfism was most likely caused by growth-hormone deficiency--that is, his body did not produce enough natural growth hormone for him to reach his full height. Such dwarfs, whose limbs are in the same proportion to the rest of their bodies as those of an average-size person's, were prized in the entertainment business, since their appearance was thought to be more pleasing than that of, say, an achondroplastic dwarf. "As symmetrical as an Apollo," Barnum once said admiringly of his prodigy.

Stratton was an enormous hit with the public, so much so that he secured Barnum's reputation and fortune. In 1844 Stratton and his mentor traveled to London, where he was presented to Queen Victoria ("How d'ye do," he said to her) and amused the court by becoming involved in an altercation with one of the royal poodles, memorably depicted in a drawing done at the time. From there he traveled throughout Europe, occasionally making use of an ornate miniature carriage pulled by ponies. When he returned to New York, in 1847, his appearances at the American Museum broke attendance records.

If Stratton's parents set their son's destiny before he was old enough to have a say in the matter, the opposite was true of his future wife. She was born on October 31, 1842, in Middleborough, to the long-established and prosperous Bumps, a family that traces its roots to the Mayflower and is well known in the town to this day. Her full name was Mercy Lavinia Warren Bump. Like Charles, Lavinia was apparently growthhormone deficient. She stopped growing at the age of ten, when she was two-foot-ten. In an unusually progressive move for its day, the town's school committee hired her to teach elementary school when she turned sixteen. In a series of autobiographical essays that she wrote for the New York Tribune Sunday Magazine in 1906, she recalled the joy and dedication she brought to that task:

I was very zealous in my duty, and at the end of the term received the commendation and thanks of the committee for the excellent discipline I maintained, as well as the progress made by the pupils under my tuition. The youngest even was far above me in stature, yet all seemed anxious to be obedient and to please me.

Yet when a cousin suggested that she join his "floating palace of curiosities" on the Ohio and Mississippi Rivers, she agreed, apparently without hesitation. As she writes of her erstwhile teaching career, "I thought I had now found a proper and genial vocation, but during the subsequent vacation an event occurred which entirely changed the tenor of my life." From there, it was a very short leap to P. T. Barnum's revue.

Lavinia's career choice shows why it's intellectually hazardous to judge Barnum and his ilk by the standards of our time. As Gladys Beals insisted, quite rightly, Barnum didn't exploit the Strattons, because they did exactly what they wanted to do--particularly Lavinia, who, unlike Charles, joined Barnum's troupe as an adult. Lavinia gave up a promising career as a teacher, in a community where she and her family were respected, in order to join a freak show. The Strattons made a lot of money and lived well, denying themselves nothing. It wasn't Barnum's fault that they ended up blowing most of their fortune--after all, he was pretty good at blowing fortunes in his own right. Indeed, at one point, after a fire had consumed the American Museum, Charles Stratton came out of semiretirement to go on tour with Barnum, helping his old boss raise money for no reasons other than loyalty and affection. Criticizing Barnum for displaying dwarfs, along with "armless wonders," microcephalics (dubbed "Aztecs" for some reason), Siamese twins, and other human curiosities, is like criticizing George Washington and Thomas Jefferson for keeping slaves. Such criticism is not so much valid or invalid as it is ahistorical.

Barnum dropped the harsh-sounding "Bump" from his new star's name, and she was known as Lavinia Warren from that point on. Her 1863 marriage to Charles Stratton at Grace Church in New York was one of the great media spectacles of the era, with two thousand people attending and gifts coming in from the likes of the Astors, the Vanderbilts, and President and Mrs. Lincoln, who received the couple at the White House during their honeymoon tour. The attendants were two other Barnum dwarfs: "Commodore" George Washington Morrison Nutt, an earlier suitor of Lavinia's, and her sister Huldah Pierce Bump, known as Minnie Warren. Months later, the proud husband and wife were photographed posing with a baby--a hoax aimed at keeping interest alive in the Strattons, as well as feeding curiosity about their sex lives. It was a hoax they could not sustain, and, after a discreet interval, it was announced that the baby had died of a brain inflammation.

Hard times lay ahead. Charles, who enjoyed cigars and rich food, died of a stroke in 1883. Lavinia, strapped for cash, married another dwarf, "Count" Primo Magri; along with his brother, "Baron" Ernesto Magri, they formed the Lilliputian Opera Company, hit the road, and enjoyed some success. But Lavinia could never reconcile her spending with her income, and there was far less public interest in her as a plump, elderly dwarf than there had been when she was young and attractive. She and Primo opened a general store in Middleborough; they also for a time became the best-known residents of something called "Midget City," at Coney Island, one of a number of such theme parks to spring up around the country. Lavinia died in 1919, and was buried in Bridgeport alongside Charles.

Don't shed any tears for the Strattons. They lived the life they chose, and by all appearances they lived it well. But as the historian Robert Bogdan points out, the tragedy of Charles and Lavinia Stratton was that they lived a lie and convinced themselves that it was the truth. The Strattons were intelligent, normal, average people in every way except for their short stature. Yet they believed what they were constantly told: that they were exceptional performers, artists, entitled to the accolades and gifts that came their way, even though they were, in reality, mediocre talents whose only real attraction was their unusual appearance. They were exhibited in what Bogdan calls the "high aggrandized mode," depicted as people of refinement and gentility. It was mostly farce, but as they got older, they ceased to see the farce.

"Tom Thumb became a serious Charles Stratton, a person who wanted others to respect him because of what he had achieved and to ignore how he might have achieved it, the basis of his fame," Bogdan writes. In fact, the lives that they enjoyed were not just dependent on the mere fact that they were dwarfs, but that they were a certain type of dwarf, "perfect humans in miniature," to use another of Barnum's phrases. Had they been disproportionate, they never would have been dressed up in tuxedos and flowing gowns. More likely they would have been cast as clowns or freaks, or as "Esquimaux" (Eskimos), dressed in furs against a backdrop of fake icebergs, like an achondroplastic dwarf known as Miss Olaf Krarer. That the Strattons' particular accident of birth turned out in their favor made it no less accidental.

In walking through the Middleborough museum, I found it difficult to reconcile nineteenth-century attitudes with twenty-first-century sensibilities--especially since the attitudes that were reflected in those displays were so at odds with what I want, and expect, for Becky.

So my favorite exhibit turned out to be something that spoke not of its time, but of any time. It was a photograph of Lavinia, Primo, and Ernesto, somewhat advanced in years, sitting around a dining-room table with three average-size adults--Lavinia's brothers, perhaps--in the dark, Victorianstyle Bump family home. There was a certain quality to the photo that at first I couldn't put my finger on. Later I realized that it was its simple portrayal of normal family life, away from the spotlight, unself-conscious, the three dwarfs composing themselves to be photographed not as curiosities but for the same reason that any of us pose for a camera-wielding brother or aunt.

In that photograph, I could see Lavinia Warren not as a world-famous oddity, but rather as the proper Middleborough schoolteacher that she was and might have continued to be.

***

THE FIRST DWARF whom researchers know anything about was a young man who died more than eleven thousand years ago in southern Italy. His grave was unearthed in 1963, but it wasn't until 1987 that a group of anthropologists, led by David Frayer of the University of Kansas, studied his skeleton and reported on its significance in the journal Nature. According to Frayer, the young man appeared to be about seventeen years old and less than four feet tall. Although humans at that time had to contend with the severe, subsistence-level existence of the Ice Age, foraging for food and living in caves, the young man appeared to have been well cared for, and to have been treated as a valued member of his clan. At burial he was wrapped in the arms of a thirty-five-year-old average-size woman whom the investigators guessed may have been his mother.

The man's dwarfism type was identified as acromesomelic dysplasia, a rare disorder that is similar in appearance to achondroplasia except those who have it tend to be a few inches shorter. Anthropologists disagree as to whether the clan's acceptance of a dwarf was evidence of empathy or of his ability to adapt and contribute despite his disability. My betting is on the latter. Though he was probably exempted from having to spear woolly mammoths, he could have held his own at other tasks because acromesomelic dysplasia usually carries with it few health complications, fewer even than achondroplasia. As the Smithsonian Institution's Donald Ortner told Scientific American, "Certainly some support mechanism had to be there. But it's quite remarkable how capable people are at adapting to physical disabilities of one sort or another."

Dwarfs played a special role in the court and religious life of ancient Egypt, some four thousand to five thousand years ago. The scholar Bonnie Sampsell writes that dwarfs served the pharoah in such positions as "personal attendant in elite households, supervisor of clothing and linen, pet handler, jewelry maker and entertainer or dancer." Achondroplastic dwarfs were often the subjects of statues and carvings, sometimes with the facial and limb characteristics of achondroplasia toned down and stylized, sometimes portrayed with perfect realism.

The most fascinating of these Egyptian dwarfs was Seneb, whose mastaba, or tomb, was excavated in 1927. Sampsell writes that inscriptions on the tomb show Seneb held such positions as "Director of Dwarfs in Charge of Dressing," "Director of Weaving in the Palace," and "Great One of the Sedan Chair"--possibly a reference to the chair of the pharoah himself. Seneb, who lived in approximately 2300 b.c., was also a priest. Seneb's most striking legacy is a beautifully painted statue of him, his wife, Senetites, and their son and daughter. Seneb and Senetites are sitting on a slab; Senetites is average-size, and her legs dangle over, her feet resting on the floor below and her hand affectionately touching her husband's arm. Seneb sits cross-legged on top of the slab, his short arms folded in front of him, his head slightly larger than his wife's. To fill in the space next to Senetites's legs, the sculptor added carvings of their son and daughter. It is a remarkable piece of art, not just for its stunning execution, but for the sense of easy normality it imparts to a dwarf husband and his average-size wife, a relationship that would draw stares today, let alone more than four thousand years ago.

Some Egyptian gods also seem to have been portrayed as dwarfs, such as Ptah-Pataikos and Bes--the latter of whom, Sampsell writes, was thought to protect the bodies of the dead and to keep diseases, dangerous animals, and evil spirits away from the living. (I say "seem" because Sampsell notes that Bes was also part animal, which calls into question whether his dwarf-like features were actually intended as such.) "In probably no other culture," Sampsell says, "have dwarfs been given a more visible role and apparently a chance to enjoy a normal life than in the Old Kingdom of ancient Egypt." That's a bold assertion on the basis of scant archeological evidence, but the benign countenances of Seneb and Senetites suggest that the ancient Egyptians could teach us a few things about accepting--and even celebrating--diversity. Certainly the same could not be said of all ancient peoples. Consider the Book of Leviticus, in which God himself forbade dwarfs--not to mention anyone who was blind, lame, deformed, had scabs, or had even suffered a ruptured testicle--from serving at his altar, lest they "profane . . . my sanctuaries."

Throughout history, dwarfs have played roles separate and apart, both high and low, from valued advisers to pets or jesters. According to the anthropologist Francis Johnston, dwarfs were kept by the Roman emperors Tiberius, Alexander Severus, and Mark Antony, sometimes as counselors, sometimes as mere decoration. Dwarfs were also forced to fight as gladiators in the Colosseum.

An unusually detailed history of dwarfs is offered by Hy Roth and Robert Cromie in The Little People. Their presentation raises questions--the book is filled with photographs of dwarfs in offbeat and often-demeaning entertainment roles, and the foreword, by Irving Wallace, begins unpromisingly, "This is a wonderful big book about a mad assortment of little people." Still, Roth and Cromie appear to have done their homework. They are particularly good on the role of dwarfs in Western mythology: the mine dwarfs of England, who could kill miners by causing the roof to collapse, the shaft to explode, or water to rush in unless they were bribed with food and other gifts; the "Black Dwarf," a curmudgeonly hermit who inspired Sir Walter Scott; the Teutonic dwarfs, skilled swordmakers who, when angered, stole crops and children, and who were created from grubs found in the decaying body of a giant; trolls, who hated noise; elves, who danced in the moonlight; and on and on it goes.

As for actual historical figures, Attila the Hun is sometimes described as having been a dwarf, although Roth and Cromie caution that little is known about him. Most likely references to Attila's possible dwarfism survive because it's included in Gibbon's The History of the Decline and Fall of the Roman Empire, which in turn relied on ancient works of dubious accuracy. The Lancet published an article in 1991 suggesting that Richard III was a dwarf. St. Gregory of Tours is sometimes described as having been a dwarf, though that claim, like the one regarding Attila, is considered unlikely by experts today.

Among the most famous dwarfs was the Englishman Jeffrey Hudson (1619-1682), who was introduced to Queen Henrietta Maria when he popped out of a cold pie that had been brought to her. Hudson's biographer Nick Page describes the mindset of the seventeenth-century court of Charles I this way: "A dwarf, a tiny boy only eighteen inches high. What better present for the Queen with her monkeys and dogs than a little human, all of her own?" (The extent of Hudson's short stature was almost certainly exaggerated.) Hudson did enough living for several lives. He was named a captain for the royalist side in the English Civil War; he shot and killed a man in a duel; and he was captured by the Barbary pirates twice--the second occasion resulting in more than two decades in slavery in North Africa, during which time he allegedly added nearly two feet to his foot-and-a-half-high stature, apparently the result of his pituitary system's belatedly kicking in.

A French dwarf by the name of Richebourg, said to be somewhere between twenty-three-and-a-half and thirty-three-and-a-half inches tall, was an aide to the Duchesse d'Orleans, mother of Louis Philippe, the future King of the French. Richebourg's claim to fame was his role as a surreptitious courier during the French Revolution. "The device," Roth and Cromie write, "was simple: Richebourg, dressed in a baby's outfit, was carried by a nursemaid with the papers concealed in his clothing."

Until the modern era, no one did more to imbue dwarfs with a sense of dignity and humanity than the seventeenthcentury Spanish-court artist Diego Velazquez. To do so, Velazquez had both to adopt and rise above the standards of his day. As the art critic Norbert Wolf writes,

In Spain (and other countries, too), there was a long tradition of including dwarfs in royal portraits as subordinate figures. Basically, these deformed little creatures were merely attributes of royal dignity, part of the furnishings of the court and regarded as neuter beings rather than fully human. Velazquez accepts this distinction, yet ultimately he cancels it out.

As an example of this duality, Wolf offers Prince Baltasar Carlos with a Dwarf (1631), in which the sixteen-month-old prince is shown with a young female dwarf in a dark green dress. She is clearly subordinate, and Velazquez paints her in darker, broader brushstrokes than he does his royal subject. Yet, somehow, he manages to depict the girl with more realism and humanity than her playmate. As Wolf writes, "the melancholy inherent in the picturesque shadows says more about the dwarf girl's destiny than the bright flesh tints of Baltasar Carlos's face can tell us about his radiant, princely figure."

Dwarfs were also depicted in Velazquez's masterpiece, Las Meninas (1656-57), a surrealistic treatment of the Infanta Margarita and the rest of the royal family that anticipated Salvador Dali by three centuries. A central figure in Las Meninas is Velazquez himself, caught in the act of painting. In the foreground, on the right-hand side of the canvas, are a female dwarf, Mari-Barbola, and a male dwarf, Nicolasico Pertusato, who rests his foot on an enormous dog.

Among the more notable aspects of the painting is Velazquez's sympathetic portrayal of Mari-Barbola, whose gaze evenly meets that of the viewer, straightforward and unashamed. So I was stunned by Wolf's description of her as "grotesquely misshapen." To me, her looks are pretty much standard achon; her facial figures appear to be more affected by achondroplasia than is typical, but she is hardly grotesque, or even particularly unattractive. And unlike Wolf's earlier description of dwarfs as "deformed little creatures," when he was writing about seventeenth-century attitudes, this time he is speaking for himself.

***

IS THIS HOW the world sees Rebecca Elizabeth Kennedy? As "grotesquely misshapen"? Is that why strangers stare and point and whisper? Just as I can't imagine why Norbert Wolf finds Mari-Barbola's face so repulsive, I can't imagine what people are thinking when they stare at my daughter. Or why anyone would pay money to stare at another human being. But it happened. It happens still, under the guise of "dwarf tossing" or "midget wrestling." The roots of such spectacles are deep and apparently not easily eradicated. They say much about cultural attitudes toward difference. Rather than seeing dwarfism as one of many attributes of a person, dwarfism is seen as the person: he is a dwarf, not a person. That's why some people within the dwarf community would rather talk about persons with dwarfism rather than dwarfs. To substitute the difference for the person is to deny his humanity. It's an old story, and a current one, too.

Barbara and I think Becky is beautiful. To those who don't know her, though, her size and disproportionate appearance are the first things they notice. Achondroplasia? What's that? For many people, she's the first dwarf they've ever seen--maybe the only one they'll ever see outside of a media context. Most people never have the opportunity to assimilate dwarfs into their consciousness the way they have assimilated, say, people of different racial backgrounds. To them, dwarfs will always look funny, or wrong, because they're never going to see enough dwarfs to register them as just another type of normal. Three days at a Little People of America conference and they'd get over it. But unless they have a family member who's a dwarf, that's probably not going to happen.

Documentaries on dwarfs appear regularly on the Discovery Channel, HBO, even MTV. Sally Jessy Raphael, Maury Povich, Montel Williams, and other TV talk-show hosts frequently have dwarfs on as guests. Howard Stern puts on the air such sorry cases as "Hank the Angry, Drunken Dwarf," who died in 2001 from complications related to alcohol abuse, and "Beetlejuice," an African-American dwarf who makes a fool of himself by pretending (or maybe not) to be mentally disabled. Somewhere in the deep recesses of our collective psyche, we haven't evolved much past the delight that Henrietta Maria felt when young Jeffrey Hudson popped out of her pie.

Recently, the public has been captivated by a commercial for Apple Computer starring "Mini-Me," Verne Troyer, the two-foot-eight actor from the Austin Powers movies, and Yao Ming, the seven-foot-five center for the Houston Rockets. Yao's role is to make you gasp; Troyer's, to make you laugh--as, in fact, Yao does when Troyer pulls out a big-as-he-is Macintosh PowerBook. It's an entertaining ad, and Troyer's non-stereotypical role as an airline passenger, perhaps a businessman, is something of a step forward. But the humor depends on our having internalized a stereotype about who is automatically entitled to respect and who must earn it--in this case, by whipping out the biggest, uh, laptop on the planet.

"We seem to be a fad," says Hillary Melechen, a woman with achondroplasia from St. Louis, Missouri. I'd met Melechen at a screening of Liebe Perla, a documentary about a family of Hungarian-Jewish dwarfs who survived Auschwitz only because the infamous Josef Mengele had saved them for his experiments. Melechen had said some interesting things about being both a dwarf and a Jew, and so I sought her out later to ask her about our cultural fascination with dwarfs.

"I don't know," she told me, but she quickly warmed to the subject. "I think it's--I wonder if it's partly because difference is so uncomfortable in this culture. And we're an easy target. We're so few. It's a difference that's so looks-based, and we do so much in this culture based on looks." She added: "We are disturbing to people to look at. When I was a kid, there were people who saw me and they'd scream."

They'd scream? Sitting before me was an attractive, thoughtful forty-three-year-old woman with blond frizzy hair and wire-rimmed glasses. Yes, she was four feet tall. But for me, an average-size person who assimilates into my consciousness the way dwarfs look every day of my life, the only thing that stood out about her appearance was that she pulled a hand cart with a stool and a pillow everywhere she went, the better with which to make herself comfortable following back surgery. As with Becky, it wasn't her height that I noticed so much as the complications of achondroplasia. The idea that anyone would scream because of her size was incomprehensible. Will people ever look at Becky and become so overwhelmed with fear and revulsion that the only thing they can do is scream?

With his training in psychology, Len Sawisch offers specific answers to the question What is it about dwarfs? He points to three reasons why dwarfs receive an inordinate amount of attention, even compared to people with other visible disabilities.

First, of course, they simply look different. "Our attention is drawn to incongruity," Sawisch explains. "Our attention is drawn to dissonance. Our attention is drawn to differentness. There is so much sensory stimulation available to us that we can't afford to tend to all of it, or most of it. So what we do is filter out the sameness." Dwarfs, obviously, do not get filtered out.

Second, we associate size with age, and dwarfs break that particular mold. "Everybody was once small, regardless of where you are as a human," Sawisch says. "We all grow at least some, and everybody went through that whole growth process or maturation process." And one of the lessons that kids learn, he adds, involves "size and power and freedom and autonomy and the ability to force your will on others." The message that kids hear is, "You're not big enough, you're not old enough. When you get older, when you get bigger, older/bigger, older/bigger." Dwarfism turns this simple childhood rule on its head.

Finally, there is the matter of "innate releasers," sensory stimuli that trigger the most instinctive, primitive parts of our brains to react in preprogrammed ways. Sawisch cautions that this is theory rather than established fact. But the idea is that dwarfs have certain characteristics that make people think of infants, and thus simply seeing them can conjure up some of the same emotions. Sawisch specifically cites achondroplastic dwarfs, whose large heads and small limbs mimic the proportions of babies. But the innate-releaser theory, if true, would presumably apply to other types of dwarfs as well.

Including Charles Stratton and Lavinia Warren. Unlike achondroplastic dwarfs, they had the same proportions as average-size adults, even though they were less than three feet tall. Yet surely the innate-releaser theory would apply to them, since their childlike appearance was their principal attraction. It was an attraction they were able to exploit their entire lives, for richer and poorer, in sickness and in health. At a time when the display of "human curiosities" was an ingrained part of American culture, General and Mrs. Tom Thumb figuratively stood above them all.

***

CHARLES AND LAVINIA Stratton's hold on the imagination persists. The Tom Thumb memorabilia is the highlight of the Barnum Museum in Charles's hometown of Bridgeport. Among other things, you can see several of the miniature carriages that the Strattons used, including one shaped like a walnut. On the wall opposite is an inscription that manages both to capture Tom Thumb's appeal and to strip Charles Stratton of his humanity: "Like a living Peter Pan, Tom Thumb seemed to bridge the gap between man and boy--to be a clever child who refused to grow up. People came to see him out of curiosity, but quickly identified with his spirit of mischief and fun."

It is in Middleborough, though, where the allure remains strongest. At the Tom Thumb Museum I picked up a sheet of paper with the outline of a tiny hand that is supposed to be that of "Mrs. Tom Thumb." The instructions: "Please place your hand on the drawing to get a better idea of her size." I also bought a book called General Tom Thumb and His Lady that turned out to be little more than a deification of its subjects, complete with endless descriptions of the gifts they received and their "fairy wedding."

I wondered whether I would ever take Becky to such a place. I liked Mrs. Beals, and the memorabilia was displayed with both affection and respect. Yet the prevailing atmosphere was that of a different, crueler era, a time when viewing "wonders of nature" such as the Strattons was seen as no more perverse than, say, keeping people as slaves. At the very least, I knew I didn't want Becky to see this until she was old enough to understand it fully. Surely it would never mean the same thing to her that it did to me when I was a child--that is to say, nothing much, just a place to while away a rainy afternoon.

After taking my leave of the museum, I stopped by the Middleborough Public Library. In one of the library's reading rooms, exactly as I remembered them, were enormous portraits of Charles and Lavinia; in another, Minnie Warren and Commodore Nutt.

But there was one more stop I wanted to make. I recalled that the Bump family lot was not twenty feet from where my parents were buried, in Nemasket Hill Cemetery. I drove up and started looking around. I found a weather-beaten old tombstone, a cross, a crown, and the name minnie inscribed on one side. On the other was a more complete description:

HULDAH P.
WIFE OF
EDWARD NEWELL
DAU. OF
J.S & H.P BUMP
BORN JUNE 2, 1849
DIED JULY 23, 1878

This was Minnie Warren, Lavinia's only dwarf sibling in a large family of large people. Minnie had become pregnant and, according to Mrs. Beals, was advised to have an abortion; but she rejected the idea on religious grounds. Sadly, because of her small size, both she and her child died. The baby was supposedly buried in its mother's arms, although there was no mention of that on the headstone. Her husband, also a dwarf, returned to his native England and remarried, later performing off and on with Lavinia and the Count.

Minnie's grave had one other noteworthy quality: rectangular stonework, covered with lichens, that outlined what must have been the dimensions of her child-size coffin.

Thus even in death was Minnie Warren singled out for her dwarfism. As with the figure of Seneb, benignly looking out over the expanse of more than four thousand years, balancing himself on stunted legs, his tiny arms held in front of him, Minnie's survivors made sure that her difference would transcend life itself. It says something interesting and maybe a little unsettling about us. Yes, she was a dwarf, but she was also a person--a person with dwarfism, if you will. To the living, though, it seems that her size was her most important characteristic.

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Table of Contents

Above images: top - Becky's first day of preschool, September 1995. Copyright ©  1995 Dan & Barbara Kennedy; next - Las Meninas, 1656, Diego Velázquez

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"Little People": Chapter Two - Life Saving

Little People Chapter Two
Life Saving

BARBARA AND I met as students at Northeastern University, fell in love, and got married in our early twenties--then waited ten years before having kids. Partly this was a matter of circumstance: I wanted to put off having a family until I had gotten my master's in American history at Boston University, a five-year slog through night school. Then my parents became terminally ill, first my father, followed by my mother; and I, as an only child, spent most of my nonworking time taking care of them. After my mother's death--too soon, really, even to begin to process all that had happened--I started a quarterly magazine in Boston's northern and northwestern suburbs, an ill-conceived venture that flopped in less than a year. That was followed by a year of personal struggle: unemployment, deep depression, and gradual recovery.

Barbara and I have always had something of an odd-couple relationship: I am loud and talk too much; she is quiet, and there are times when she hardly talks at all. I run and hike; she'd rather go to the mall. I like Bob Dylan and Bruce Springsteen; she prefers Simon & Garfunkel and George Winston. What we share--what we've shared almost from the time we met--is a fierce devotion to each other, a devotion that's all the stronger because it's hard to explain. She got me through this dark period, picking me up at a temporary job I had and driving us to the beach with bag lunches, slowly, gradually, pulling me through it. Some marriages can fall apart during such times; ours grew stronger.

When we were finally ready to start a family, we discovered that there's a lot more to getting pregnant than just having sex--and that staying pregnant is even harder. After a year of trying, Barbara finally became pregnant, only to suffer a miscarriage sometime during the winter of 1989-90, an event I am ashamed to say that, because of my own preoccupations, I barely remember with anything other than a vague feeling of relief.

By the spring of 1990, though, she was expecting again, and this time we were both ready. Timothy Daniel Kennedy was born on January 15, 1991. He was so strong, and his birth so uneventful, that a nurse actually suggested in the delivery room that Barbara get dressed and go home. Two weeks later, I began work as a copy editor at the Boston Phoenix, a venerable alternative weekly newspaper. The angst of the previous year had given way overnight to the American dream: a good job and a brand-new baby.

Timmy's health was remarkable, and I can honestly say that I never saw it as something we were entitled to. For most of the 1980s, I had worked as a reporter for the Daily Times Chronicle, in Woburn, Massachusetts, and covered a landmark federal trial over the dumping of toxic waste, a case made famous in Jonathan Harr's 1995 book, A Civil Action. During those years I became friends with Anne Anderson, whose insistence on finding out why her son Jimmy had gotten leukemia--and why he'd died--was the driving force behind the lawsuit. Anne was and is a friendly and kind woman, but her sadness was never far from the surface. My experience in Woburn taught me never to take any child's health for granted. I marveled at Timmy's strength and looked at it as a gift. He breezed through check-ups. He was walking by one, running not long after that, a loud, curious presence, disdaining naps for fear that he would miss something, scampering around the kitchen table and laughing while Barbara and I ate our supper.

Barbara had always wanted three kids; I, having grown up without brothers or sisters, was a bit skeptical, but I certainly wanted two.

Barbara had always wanted three kids; I, having grown up without brothers or sisters, was a bit skeptical, but I certainly wanted two. Barbara came from a big family: she had two brothers and a sister, and they and her parents--along with spouses and grandchildren--all lived within a few blocks of each other in Colonie, New York, a suburb of Albany. Barbara was the only member of her extended family who'd moved away--who'd escaped, we liked to joke. At Tanski family gatherings, it was Barbara who was loud and boisterous, and I who was quiet and withdrawn. Big families were alien to me. Yet I had some vague regrets at not having a brother or sister to talk to, especially with my parents gone. I figured we'd go for two and then decide later on a third. Barbara figured that having a third child was something that would take care of itself.

"I could have twins," she would tell me, laughing. "My father was a twin."

"Well, that would be okay," I replied.

"Or we could have two--and then I could have twins."

"Jesus . . ."

One fact was indisputable: we couldn't have child number three (or four) until we'd had number two. And having waited as long as we had for Timmy, we knew we were running out of time. Less than a year after Timmy's birth, we were expecting again; but that pregnancy, too, ended in miscarriage. By now we were in our mid-thirties, with conception and pregnancy becoming more difficult with each passing year. With the help of Clomid, a fertility drug, and daily temperature monitoring, by early 1992 Barbara was pregnant once more. We hoped for the best and set our sights on August, the due date.

Yet even though we didn't know at the time precisely what was going on, there were signs throughout that something was not quite right. Barbara's pregnancy with Timmy had been almost entirely without complications, but with Becky it was one thing after another. Because of Barbara's two miscarriages, her obstetrician put her on progesterone, which Barbara had to administer to herself in the form of vaginal suppositories. Next, it was discovered that she had placenta previa--that is, the placenta was partially blocking the cervix, a situation that could result in dangerous bleeding and that would require a Cesarean section. Fortunately, and surprisingly, the placenta moved on its own accord, and no C-section was necessary.

Becky's dwarfism was actually detected before she was born, though no one realized it. A routine ultrasound showed that Becky's arms and legs were shorter than expected--or, as the radiologist put it, her head and torso appeared to be at thirty-six weeks, whereas her arms and legs were at twenty-eight weeks

In the final weeks, Barbara grew absolutely huge. With Timmy, her size had stayed well within normal range, but with Becky she swelled with amniotic fluid--characteristic, we were later told, of a genetic bone condition, although at the time her obstetrician seemed unconcerned. That expanse, in turn, gave Becky so much room to swim that she never really moved into position for delivery. Thus, Barbara had to be induced with Pitocin, a synthetic version of oxytocin, the hormone that causes contractions. Barbara got contractions, all right--violent, nauseating contractions that doubled her over while she walked up and down the hospital corridor with an IV drip in her arm.

Becky's dwarfism was actually detected before she was born, though no one realized it. A routine ultrasound showed that Becky's arms and legs were shorter than expected--or, as the radiologist put it, her head and torso appeared to be at thirty-six weeks, whereas her arms and legs were at twenty-eight weeks. He chalked up the anomaly to getting a "bad angle" because of the excess amniotic fluid, which made it difficult for him to move Becky into position for an accurate picture. We accepted that explanation; at least, I have no memory of having any serious doubts.

Becky was born at Beverly Hospital late on a Saturday afternoon. She had inhaled meconium--fetal poop--during delivery and had to be rushed to the special-care nursery lest she come down with pneumonia. She was a beautiful baby, eight pounds, two ounces, nineteen and a half inches long--just a half-inch shy of her brother's length at birth. Certainly, at least at first, there was no suspicion that there was anything wrong other than the meconium in her airways and a touch of hypoglycemia.

I went home for a few hours to check on Timmy, who had been staying with neighbors. By the time I returned, everything had changed. A doctor from Boston, filling in at the special-care nursery for the weekend, was concerned about the size of Becky's head. It was, she said, clearly larger than normal. It could be brain damage; it could be dwarfism. We were horrified by the prospect that our brand-new little girl might have something seriously wrong with her, and--no doubt as a self-defense mechanism--I have completely forgotten the chain of events that led to brain damage being ruled out. I just remember being profoundly grateful that the worst that could happen didn't happen. Which left the possibility of dwarfism, a notion as exotic and strange to us as if we'd been told she was from another planet.

Timmy had been a perfect-looking newborn; his birth was so easy that he didn't even have the misshapen head common with justdelivered babies. Barbara and I both knew that Becky, though reasonably normal-looking, was--well, off a bit. It was hard to tell whether her arms and legs were shorter than they should be, but there was no doubt that she had an unusual head: large and flat, with a triangular appearance when you looked down at the top. That evening, I picked up Timmy from the neighbors' and, after putting him to bed, anxiously called Barbara's obstetrician and told him of the concerns that had been raised. He doubted the possibility of dwarfism, but my feeling of relief did not extend much past the moment when we ended our conversation and I hung up the phone.

Achondroplasia in a newborn is subtle, and in some cases it can take weeks or even months before suspicions are raised and a diagnosis is made. If it hadn't been for that one doctor in the nursery, I think I would have believed--willed myself to believe--that Becky was fine. I suspect Barbara would have asked more questions. To this day she recalls sitting with Becky in the nursery just seven hours after she'd been born and wondering about her slightly off-kilter appearance. "I remember holding her that night and knowing there was something wrong," she says. Still, it could have been quite a while before we got the right answers. Dwarfism is not, after all, the sort of thing a local hospital runs into every day.

***

WHAT IS NORMAL? More specifically, what is a genetic difference and what is a genetic defect--and how do you distinguish between the two? Does it matter? In a word, yes. In language and in the real-life attitudes that language reflects, differences are good, defects are bad; differences are to be nurtured, defects eliminated. To eliminate a defect that causes real suffering is obviously an unalloyed good. But if one person's defect is another person's difference, then the moral calculation changes considerably. And if the defect/difference can't be eliminated without also eliminating the person, well, that's another order of magnitude altogether.

Some of these judgments are easy to make. Consider eye color. Brown is dominant and blue is recessive, meaning there are more people with brown eyes than blue. I'm oversimplifying, and I'm not even mentioning those whose eyes are green or gray or utterly unique, but indulge me. If brown eyes are the default mode for the human race, are people with blue eyes somehow defective? Of course not. Blue eyes work exactly the same as brown ones. Mine happen to be blue. Of far more significance, though, are the facts that I've had to wear glasses since I was nine, that middle age forces me to switch back and forth between two pairs when I'm reading, and that an allergy often makes my eyes dry and itchy and uncomfortable. Eye color? Who cares?

Or take race. Through some combination of genetic attributes, people of European, African, and Asian ancestry all look quite different--from the pigmentation of their skin to the shapes of their noses and eyes to the color and texture of their hair. But despite the efforts of some to pretend otherwise, we know that racial differences are morally and intellectually neutral, meaningless--and of little importance when compared to other aspects of our genetic make-up. Scientists say that the genetic differences between Europeans and Africans, for instance, are less pronounced than the differences among various African ethnic groups. Obviously the genetic differences that are the most visible are not necessarily those that are the most profound, or that help determine who an individual is.

Now turn the needle over to the other end of the dial. Down syndrome, quite clearly, is a genetic defect--a condition created by an extra chromosome that causes mental retardation and myriad other problems, such as heart abnormalities, hearing deficiencies, and short stature. (Some reference books actually refer to Down's as a type of dwarfism. That's not necessarily wrong, but it seems beside the point.) People with Down's often enjoy good, meaningful lives, especially when brought up in a loving home environment rather than the institutions they were typically warehoused in several generations ago. Still, no reasonable person would call Down syndrome a mere genetic difference on the order of eye color or ethnicity.

The same is true of genetic defects that do not manifest themselves until adulthood, such as those responsible for Huntington's chorea (the disease that killed Woody Guthrie), amyotrophic lateral sclerosis (affecting Lou Gehrig, the physicist Stephen Hawking, and Morrie Schwartz, of Tuesdays with Morrie renown), and certain types of breast cancer. No one would call these mere genetic differences. And even though you could construct an argument that Gehrig, Schwartz, and Hawking have had a more significant and lasting legacy than they would if they'd never gotten ALS, it is nevertheless true that their genetic defect had an enormous, and damaging, effect on their lives.

Finally, turn the needle back to the middle. This is the part of the dial occupied by dwarfism. Difference or defect? Diversity or pathology? It is a politically charged debate with consequences not just for the dwarf population, but--in an age of prenatal testing and the promise (and threat) of genetic engineering, at a time when our increasing acceptance of difference is matched only by our growing ability to eradicate it--for all of us.

Nowhere does this debate rage louder than within the dwarf community itself. On the Dwarfism List, an Internet forum with nearly eighteen hundred subscribers that I had a hand in founding and continue to help run, there is little agreement on the difference/defect divide. Some frankly define dwarfism as a genetic defect. Others are quick to respond, "God doesn't make mistakes." This is supposedly the show-stopper for the religiousminded, though it conveniently circumvents the matter of whether, say, infants born without brains are evidence that God occasionally takes a day off.

The whole reason for the debate, I suspect, is that although dwarfism is a disability (in itself a controversial assertion in some circles), it's a different kind of disability. In contrast to a person who is blind, or deaf, or uses a wheelchair to get around, a person with dwarfism--in most instances, anyway--is fully in possession of all of her physical abilities. A dwarf looks not so much like a person with a disability as she does a member of a different race, or even a different type of human. As the medical anthropologist Joan Ablon writes:

Within the context of populations labeled as physically different, the situation of the dwarf is made more complex and ambiguous for the average-sized perceiver than is that of a person with a missing limb or an impaired sensory organ, since in the case of many dwarfs, there is nothing really "wrong" or dysfunctional about any one part of them. The person is just smaller, or in the case of disproportionate dwarfs, the body is in a different form, but it is all there, and all part of a piece, with each part fitting into a harmonic, although different, whole.

Thus, according to Ablon, dwarfism is a disability, but it's a socially constructed disability. People with dwarfism are disabled not by the lack of some physical function, but by a culture that perceives there is something wrong with them--"something wrong, but not too wrong," Ablon writes--and that discriminates against them by denying them opportunities that it routinely grants to the average-size majority. Such discrimination can take the form of refusing to alter the human-made environment--lowering door handles, elevator buttons, toilet seats--in order to accommodate dwarfs' short stature. Or it can be more explicit: refusing them a job or admission to a school, or staring and pointing and laughing at them in public places.

But wait. Most disabilities, not just dwarfism, are socially constructed to a greater or lesser degree. It seems intuitively correct to say that a dwarf is not disabled in the same way that a blind person is disabled, but is that really true? For instance, if an ATM is so high that a little person can't reach it, how is that any different from a blind person's being unable to see it? If a deaf person attends a lecture and cannot hear, then he is disabled; but if there is a sign-language interpreter standing next to the speaker, then his disability disappears--or becomes meaningless, which is more or less the same thing. For some years now, a segment of the deaf community has denied that deafness is a disability of any kind. Activists have sought to elevate American Sign Language to the level of, say, English or French, and have denounced cochlear implants--surgically inserted devices that restore hearing in certain types of deafness--as the cultural equivalent of genocide. Personally, I think a middle position is appropriate. Deafness, like blindness or paralysis, is a real, physical limitation. But thinking about it primarily within its social context--a context that the hearing majority has the power to change--helps us create a better, more inclusive world.

Dwarfs, too, have real physical limitations. They aren't just short. They aren't just disproportionate. They don't just walk differently. They are disabled, in objective fact as well as cultural theory. The most dramatic example is that the opening inside a dwarf's spinal column is barely big enough to accommodate the spinal cord. In some cases--particularly with advancing age, but sometimes in young children--"barely big enough" gives way to "too small," and the only way of preventing paralysis or even death is to saw the spinal column open and remove chunks of vertebrae. Dwarf adults sometimes suffer through years of tingling and weakness and pain, trying to put off surgery as long as possible; it certainly isn't the sort of thing anyone would want to go through twice, though some do. And there's more, much more. Dwarfs can't extend their arms fully at the elbow. Children tend to get bowed legs, which can make walking difficult and painful, and which has to be corrected by surgery. Some dwarfs, especially kids, have hydrocephalus, "water on the brain." In most cases it's mild enough to warrant nothing more than monitoring and measuring. But in a few rare instances, the condition is severe enough that a shunt has to be surgically inserted, draining excess fluid from the skull cavity to the abdomen. And--as we were about to learn with Becky--sometimes, again mainly with kids, the airways are so small that they can get easily overwhelmed by a common respiratory virus, turning what should be no more than a bad cold into a life-or-death struggle.

Keep in mind that I'm talking only about achondroplasia. As I observed earlier, at least two-thirds of all dwarfs are "achons," as they are sometimes called. But something like two hundred different types of dwarfism have been identified, some of them unnamed and specific to one individual, some quite disabling. People with the most common types of dwarfism other than achondroplasia--diastrophic dysplasia, pseudoachondroplasia (despite its name, not genetically related to achondroplasia at all), and spondyloepiphyseal dysplasia congenita (known simply as SEDc, or SED)--often have to undergo numerous orthopedic surgeries from infancy on. Some can only walk short distances, using crutches, scooters, and wheelchairs to get around.

So, yes, dwarfism, even achondroplastic dwarfism, is a disability, and not just a socially constructed one. But it's a difference, too, and many within the community take great pride in that difference. Ruth Ricker, an achondroplastic dwarf and a past president of Little People of America, goes so far as to say that though she would like to see medical advances eliminate the complications of dwarfism, she would object to the elimination of the short stature that is its most obvious characteristic. "To change the dwarfism itself, as in the height--I think it would be hard for many of us, psychologically, to say we'd do that, because it's so intertwined with what makes us us," she once told me. "It would deny an integral part of myself that I have some pride in. It could be the end of achondroplasia."

Thus the answer to the "defect or difference?" conundrum is: both. Each of us has something like thirty thousand genes, and random mutations are not uncommon. It's just that the effects of the mutation that causes dwarfism are so obvious. As with the genetic difference that causes one person's eyes to be brown and another's blue, the mutation that causes dwarfism says nothing important about the individual who has it. But as with the genetic difference that causes Down syndrome, or Lou Gehrig's disease, it is indeed, a mistake, an error, a cosmic typo imprinted on each of the many billions of cells that the average human body contains.

Once, someone posted a message to the Dwarfism List saying something to the effect of I am not a mistake--a variation of "God doesn't make mistakes." Someone else posted a response that I think got perfectly at the difference/defect divide. I'm paraphrasing, but it went pretty much like this: Of course you're not a mistake. People aren't mistakes. On the other hand, genomes can contain mistakes, and dwarfism is clearly a mistake. But we are all more than the sum of our genomes.

***

BECKY RECOVERED QUICKLY from the meconium and hypoglycemia and came home within a few days of delivery. We received final word on her condition shortly thereafter. Barbara and I were summoned to our pediatrician's office, where we were given a brief overview of achondroplasia and a pamphlet assuring us that Becky would likely enjoy a reasonably normal life. I mainly just looked at the photos in the pamphlet of dwarf kids and adults and tried to imagine how Becky would fit into those pictures. We were also offered psychological counseling, which we turned down, and an appointment with the geneticist, which we accepted.

Some people report having a hard time adjusting to their child's dwarfism. I certainly can understand that. But for Barbara and me, the fall of 1992 wasn't a time of terrible angst, anxiety, or recriminations. We talked about this strange new reality that had been introduced into our lives, but we had no idea of what to expect. And in our ignorance, we chose to believe that Becky would be fine--just really, really short.

In part, I attribute this to the positive picture that had been painted for us by Becky's doctors, a picture very different from what would have been offered us a generation earlier, when parents were often informed that their dwarf children might be mentally retarded and would likely not live long. Soon after Becky had been diagnosed, I looked up achondroplasia in the Encyclopedia Britannica at our town library--and was shocked to read that many children die during their first year. But the encyclopedia was ancient; in any case, it was so out of sync with what we had been told, and with what I wanted to believe, that I just put it out of my mind. In part, too, I attribute my outlook to the depression I had recently recovered from. Feeling like I'd only just made it to the other side, I was determined not to slide back. Barbara, focused on the task at hand, was concerned about Becky's future, but was far more wrapped up in taking care of her baby's needs. Becky appeared to be fine, Timmy was doing great, so why worry?

I've read and heard stories about parents who actually go through a phenomenon that Joan Ablon and others refer to as mourning the loss of the perfect child. But that really doesn't get at what we were going through that fall. It just wasn't that dramatic. If Becky's physical differences were more obvious, if her disabilities were more serious, if her ability to think and to love were at issue, things might have been different. Barbara says she mourned, but for Becky rather than for herself--for the discrimination she knew she'd encounter one day, for the stares and giggles and teasing that were sure to come. One of Barbara's high-school classmates was a dwarf, and they'd worked together on a studentrun television newscast. So Barbara had more-concrete knowledge than I of the difficulties that dwarfs must face.

But as I would soon learn, my idea of dwarfism did not match the reality of dwarfism. I wasn't ready yet, but I was about to begin my real education in what it means to be a dwarf. It's an education that will never be finished, and that will always be hindered by the fact that, as an average-size father, I'm on the outside looking in. But at least I began to realize what I didn't know--and that what I didn't know could kill my little girl.

***

FOR BARBARA AND me, naming our daughter Rebecca Elizabeth was an act of affirmation. We had decided on that name sometime earlier for our baby if it turned out to be a girl. There was no special significance to "Rebecca;" we just liked it. "Elizabeth" is the middle name of Barbara's sister, Mary. When Becky was born, we went ahead and named her Rebecca Elizabeth without so much as a discussion. We were not going to save it for a future daughter with less-uncertain prospects. We were sending a signal--to ourselves as much as anyone--that this was the daughter we'd always wanted.

But the daughter we'd always wanted was beginning to have problems, big problems--far bigger than we realized until it was almost too late. Becky was a content and happy infant, smiley and engaged, easier than Tim had been at that age, but also more fragile. The outsize dimensions of her head, her weak neck, and her poor muscle tone gave her a floppy quality, and she had to be held just so lest she be hurt. And that was the least of it. She had a perpetual cold, and, since she couldn't breathe through her nose very well, she couldn't breast-feed with much success. Barbara had to give up when Becky was around four months old. At night, in her crib, the top of her head would break into a cold sweat. She'd arch her neck way, way back, as though she were trying to find a position where she could get enough air in her lungs--which, we later found out, was exactly what she was doing. Her pediatrician, Dr. Robert Krachman, tried several antibiotics, none of which seemed to do any good. He x-rayed her lungs and found that they were clear--something he couldn't explain, given that she sounded like she was congested. Finally, and to his everlasting credit, he threw up his hands and suggested that Becky see a specialist.

Once a month, Dr. Daniel Shannon, a pediatric pulmonary specialist at Boston's Massachusetts General Hospital and a leading authority in his field, would travel fifteen miles north to Beverly Hospital, where he would see patients in a clinical setting. Barbara took Becky to see Dr. Shannon in January. As Barbara described it, he took one look at Becky, one look at the results of a blood test she'd had done prior to the clinic, and said she almost certainly need a tracheostomy. Her respiratory system, he explained, was so tiny that she was unable to expel carbon dioxide as efficiently as she should. As a result, the CO2 was rising to dangerous levels in her blood. Her heart, brain, and lungs could be damaged; she could even die if she caught a cold. Becky's problems were not so acute that she needed to be hospitalized immediately, but he recommended a follow-up within the next several weeks.

That follow-up never took place. On a bitterly cold Saturday night in February, we took the kids to the mall just to get out of the house and hang out for a while. Timmy enjoyed running around a toy store. Becky alternated between the carriage and Barbara's arms. We ran into a friend and talked, getting home later than we had wanted. Becky had yet another cold and was exhausted. So were we all. The next morning Becky seemed to be filling up again, so Barbara took her to the "urgent care" department of the clinic that our HMO ran. They gave her a quick exam and told Barbara to get her to Mass General as soon as possible. She drove to Boston and took Becky to the emergency room; from there, Becky was admitted to the pediatric intensive-care unit (PICU). The diagnosis: respiratory syncytial virus, or RSV.

Now, in most kids, RSV causes nothing more than an unusually bad cold. It's potentially serious; according to the Centers for Disease Control and Prevention, it causes infections of both the upper and lower respiratory tracts, and can lead to pneumonia. But nearly all children get RSV at some point, and nearly all of them come out of it fine. In Becky's case, though, the copious amounts of mucus that RSV produces clogged airways that, because of her dwarfism, were already so tiny that she couldn't breathe as efficiently as her body required. Now her blood was both starved for oxygen and loaded with carbon dioxide. Her life was in danger.

RSV is perilous to any child who's younger than six months. Another baby in the PICU, a girl, had to be put into a chemically induced coma so that doctors could force a respirator down her throat. Becky was sick, very sick; but she proved to be a tough little kid, and she began to rally before Dr. Shannon had to do anything quite so drastic. Barbara was at Becky's side almost constantly. I had driven Tim to Albany to stay with Barbara's sister, Mary Zysinski, so that I could spend most of my non-working hours in the PICU, too. We were in a weird state of limbo, a bubble almost. The PICU is an alternate universe; at any time of the day or night it is as bright as noon, with nurses and doctors rushing about. All around us, kids were desperately ill. One little boy died after his liver transplant failed. Others hovered somewhere between life and death. To a certain extent we were removed from that. Becky, though a long way from well, was in no immediate danger; she mainly needed to be monitored closely while we figured out the next step. Whenever I visited, I experienced a combination of anxiety over Becky's condition and guilt over how much worse the other parents had it. I felt like an interloper. Yet there was no question that Becky was where she needed to be.

During the next few weeks Becky kept improving. But the level of oxygen in her blood remained too low, and the CO2 remained too high, even though she was getting extra oxygen through a tube under her nose. It wasn't just that her airways were too small; it's that, when she slept, her trachea would nearly close, creating an obstruction, which, in turn, caused sleep apnea. Other characteristics of achondroplasia combined to worsen her breathing difficulties. Her ribcage was small, which meant that her lungs couldn't inflate fully. Her face was (and is) unusually flat, giving her tiny sinuses that easily become congested. An MRI was taken to make sure that Becky's foramen magnum--that is, the top of the spinal column, where it meets the skull--was not pinching and squeezing her brain stem, a rare but by no means unheard-of problem for kids with achondroplasia. Such a complication can also cause apnea, thus mimicking some of Becky's symptoms. It was a tight fit, as it is with all achon kids, but it wasn't too tight. She wouldn't need spinal surgery. Still, a tracheostomy loomed as increasingly likely.

I didn't doubt that Dr. Shannon knew what he was doing, and it was of no small significance that he'd told us he had some experience in treating dwarfs. But Becky's life and future were at stake, and I wanted to know more before agreeing to a trach. I dug out the material on Little People of America that the geneticist had given us. The phone numbers and contact information were out of date, but one call led to another until, finally, I was put in touch with Ruth Ricker, at that time LPA's senior vice president, who, I learned, lived in Boston, barely a block from the Phoenix's offices. She agreed to pay us a visit. On a Saturday morning, a few hours before our daily trek back to the hospital, she pulled into our driveway and jumped out--down would be more accurate--carrying a bag of muffins and waddling toward our back door. Ruth stands a shade under four feet, at least a half-foot shorter than what I'd expected.

The experience was disconcerting, but it gave us reason to hope, too. We learned that Ruth, like Barbara and me, had gone to Northeastern; that she held an important job in the civil-rights division of the U.S. Department of Education; and that, like us, she followed the Red Sox and politics. From all appearances, Ruth had the kind of life we wanted for Becky. Here was proof that it was possible. If only we could get her well.

Ruth also brought something of more immediate importance: a recommendation that we contact Dr. Cheryl Reid, a pulmonary specialist from New Jersey who was a member of LPA's medical-advisory board, a group of physicians who specialize in treating the complications of dwarfism. Dr. Shannon was agitating for us to make a decision on the tracheostomy; Barbara was ready, I wasn't. I contacted Dr. Reid, and sent all of Becky's records to her after she agreed to review them. Several days later, she gave me the second-best news I could have heard: that Dr. Shannon knew exactly what he was doing, and that we should proceed with the trach. (The best news, of course, would have been that Becky didn't need a trach, and that we should get her away from that nut Shannon ASAP.)

The surgery was scheduled, then postponed when Becky caught a bug unrelated to the RSV. Finally, on the afternoon of Friday, February 26, 1993, Becky was wheeled into the operating room. The operation was performed by Dr. Michael Cunningham, an ear-nose-and-throat specialist at the Massachusetts Eye and Ear Infirmary, which is affiliated with Mass General. I was scared, anxious to the point of lightheadedness; Barbara was outwardly calm, inwardly in agony. And our feelings were only amplified by what was going on around us. Terrorists had attacked the World Trade Center for the first time that afternoon, and we watched CNN in the waiting room as the injured were led to safety. Closer at hand, immediately after Becky's surgery we and other anxious parents were shooed out of the recovery room to make way for a young gunshot victim; he later died, as I recall.

Amid this chaos, Becky's surgery went well. But seeing her afterward was a shock. A tube was emanating from a freshly cut hole in her throat, which was in turn connected to a hose that led to a CPAP machine ("CPAP" stands for "continuous positive airway pressure"), a loud, monstrous-looking device that made it easier for her to breathe while she was adjusting to the drastic change in her respiratory system. The sight of our beautiful baby in such a state was emotionally overwhelming. I was numb; I looked, but I'm not sure I saw, or believed.

Meanwhile, we worried about the effect this was all having on Tim. When I'd brought him to Albany, I was sure he'd be there only a week. He was two years old, just learning to talk, and absolutely thrived on attention from his parents. At the end of that first week, when we realized we weren't ready for him to come home yet, I drove to Albany to spend the day with him. He was overwrought and threw an eleven-on-a-scale-of-ten tantrum at McDonald's, behavior that was very unlike him. That night, driving back on the Massachusetts Turnpike, it began to snow, hard, and my car, a seven-year-old Corolla, sputtered out. I pulled over into the breakdown lane in some nether region between Springfield and Worcester, cursing, thankful only that Tim wasn't with me. This was the pre-cellphone era, and not a state-police cruiser was to be seen. To my grateful astonishment, I was able to restart the car after about a half-hour, and from there eased it to Mass General for a late-night visit with Becky and Barbara. After another week, it was clear that Becky's hospital stay was going to be a long one and, since Tim couldn't stay in Albany forever, I brought him home. Mainly, he stayed with friends and neighbors, but at least he got to spend some time with us.

Becky was in the PICU a total of five weeks--three before her surgery, two after--followed by three weeks on a regular pediatric floor. She was gradually weaned off the CPAP machine, though she continued to need oxygen. Eventually, her personality began to re-emerge, but there were aspects of the new Becky that were unnerving--none more so than her inability to make herself heard. With the trach, air was circumventing Becky's vocal cords, so even if she tried to make a sound, all that came out was a hiss. She laughed silently. She cried silently.

So did we.

During this time, the hospital staff began preparing us for the responsibility of caring for a baby with a tracheostomy, which, we were about to learn, was fairly daunting. We didn't know how long Becky would even have the trach--two years was the best guess, though Dr. Reid had warned me that it could go on much longer than that. But we did know that Becky's care was going to be phenomenally expensive, and that our HMO wouldn't pay the full freight. It's ironic. Not that many years earlier, we were told, babies with trachs were automatically sent to chronic-care hospitals, running up catastrophic bills that were routinely paid for by insurance companies. At some point someone wised up and said, Wait a minute. These kids can be cared for more cheaply, and will do much better, if they're sent home. All they need is some nursing care and some equipment. But home nurses are not routinely covered by private medical insurance. So I was dispatched to our local welfare office for the sole purpose of submitting a Medicaid application that was certain to be rejected because of our middle-class income. After that, we could apply for a special state program that covered home health care. Our insurance company would foot the bills until then.

There was more, much more. Barbara and I met with a nurse at Mass General who showed us how to change Becky's trach tube, how to suction it if it became clogged with mucus, and how to yank it out if there were an emergency. I was there, but I wasn't; I kind of zoned out, watching and listening, but telling myself I would never be able to do that. And I was right, sort of. Other than learning how to use the suction machine to remove phelgm from her trach tube--an absolute necessity if I were to be with Becky for more than fifteen minutes--I kept myself at a safe remove from trach care, never changing or cleaning her tube or changing or even tying the shoelace-like straps that held it in place. Oh, I would help occasionally, but I was more than happy to let Barbara take the lead and pass it off to whichever home nurse was on duty if Barbara wasn't around. For some reason I never felt competent enough to take charge, and was always afraid I would do something wrong, something to impede Becky's breathing, something that would hurt her. It wasn't rational or even particularly responsible. But I convinced myself that it was the best I could manage.

In early April, eight weeks after she'd checked in to the Mass General emergency room, Becky was ready to come home. We have a photo of her in her hospital room that day, strapped into one of those infant car seats that can be carried by a handle (not good for dwarfs because it scrunches their backs, but we didn't know), a big smile on her face, a bluish plastic hose running from her trach to a portable oxygen tank. And we headed home, uncertain of the future, and of our ability to handle whatever that future was going to bring.

Read it from the beginning:
Table of Contents

Above image: Becky and Barbara at Massachusetts General Hospital, March 1993, shortly after Becky's tracheostmy. Copyright © 1993 by Dan and Barbara Kennedy. 

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"Little People": Chapter One - An Unexpected Journey

Little People Chapter One
An Unexpected Journey

FROM ALMOST THE moment we were told that our beautiful new daughter was a dwarf, I've been on something of a quest--a quest to find meaning and purpose in Becky's having a life-altering genetic difference. I don't want to suggest that I've been looking for meaning in her life. That's a given. I've always believed that she has the same potential, the same opportunities, the same chance to succeed or fail, to be happy or sad, as anyone else. But I wanted more. I wanted to know why she was different--or, to be more accurate, why her particular difference was so much more obvious than those that affect most of us. And I wanted the answer to that question to be positive, uplifting, life-affirming.

Maybe it's a function of fatherhood, of the ever-so-slight distancing from family life that is imposed on men by biology and social conditioning. For my wife, Barbara, who's more focused on Becky's immediate needs, such questions of meaning are a waste of time and energy. She is who she is. But for me, forever part participant, part observer, the search for meaning is central.

My compass is the idea of diversity, of the belief that human variation is in and of itself a positive good, and that, though dwarfism will surely cause Becky problems, there are beneficial aspects to it as well. Greater empathy. Strength of character. Even service to humanity: she could be carrying genes whose purpose is unclear at the moment but that someday might prove beneficial. But is that really an honest way of looking at Becky's dwarfism? Or am I just kidding myself, rationalizing, trying to create a comforting fantasy out of a complicated reality?

In some ways, the realities of Becky's dwarfism are always with me. By now you'd think I would know better. After all, Becky is my only daughter, someone I've looked at, admired, and worried over every day of her life. You'd think it wouldn't require the puzzled reaction of strangers, of the outside world, of a culture that simultaneously celebrates and fears diversity, to pull me out of my reverie and force me to focus on the facts of the matter: That at the age of ten she is no taller than an average five-year-old. That her head is already much bigger than her older brother's, with a heavy, prominent forehead. That her arms and legs are impossibly short, that her butt sticks out, and that she sways back and forth, waddling, when she walks. That she is a dwarf not a poster child for some abstract ideal of diversity.

Not that I ever lose sight of this, exactly. In some ways, the realities of Becky's dwarfism are always with me. Every day I think about the dwarfism-related breathing complications that nearly killed her when she was a baby and that held sway over her first three years. And I know that dwarfism continues to alter her life in ways both large and small--from the slight hearing loss that makes it difficult for her to learn, to the miniature clarinet that she plays because she can't reach the bottom keys on a standard-size instrument. But these are side effects, consequences of her dwarfism, not dwarfism itself. To strangers, she is--as a physician's article on dwarfism that I once read so charmingly put it--a funny-looking kid. To us, though, her dwarfism has little to do with how she looks and everything to do with the ways it has changed--not diminished--her life, and ours.

Her learning disability makes it hard for her to understand what she reads, but she is brimming with empathy for others. Her tastes in television shows, movies, and computer games lean toward those of a much younger child, yet she has such a sense of responsibility that she will do her chores and her homework without having to be told. Her size often relegates her to playing with kids half her age, yet she is so outgoing with adults that she thinks nothing of picking up the phone and pitching Girl Scout cookies to friends of ours whom she's only met a few times. These are tangible signs of who she is, of a personality and an identity shaped partly by her dwarfism, mostly because no two kids are alike. The labeling--the idea that she is a dwarf, and that's all she is; that her individuality is subservient to how differently she happens to be put together--well, that's what I often lose sight of. Except on those occasions when others remind me.

On Labor Day weekend in 2002, right after Becky's tenth birthday, I took her to her favorite amusement park, a place in New Hampshire called Story Land, near Mount Washington. It was a rare father-daughter day; my son, Tim, had gone camping with friends; Barbara stayed home. As with the TV shows and movies that Becky watches, Story Land is geared mainly for children several years younger than she. But the reason she likes Story Land more than, say, Six Flags is strictly practical: she is just tall enough to be allowed on every ride.

I resolved to pay attention on this cool, sunny Sunday--to stand aside as much as I could and take in the scene. What I saw was a revelation--not that I should have been surprised. People were staring. There was a little pointing--not much--and some long, incredulous looks. Shuffling through the slow-moving lines for the more popular rides, I noticed people looking at Becky, whispering, wondering.

As I was waiting to order lunch, a woman came up to me and asked how old Becky was. Now, I've gotten those questions before, and normally I suggest that the person ask Becky herself. Many adult dwarfs say there's a common assumption that because they're short, they must be mentally disabled as well. To counter that, I like to nudge people into engaging with Becky, to experience her outgoing personality and her wit. This time, though, Becky had found a couple of kids to play with, and they were running in and out of a mock jail with rubber bars, shouting and laughing. So I told the woman that Becky was ten, and waited for the look of confusion, followed by enlightenment, that invariably follows. She then asked me the politically correct term for--well, you know. I should have replied "Becky," but my tongue ran ahead of my brain. "'Dwarf' is fine," I said. She seemed satisfied and walked away.

Later I thought, What an odd encounter. Not unpleasant, mind you. The woman had been friendly and inquisitive, and there was nothing about her demeanor to suggest that she thought Becky was to be pitied or looked down upon. Still, her boldness in coming up to a perfect stranger and asking why his daughter was--well, a funny-looking kid--communicated the unspoken message that Becky is public property, and that her parents are obliged to explain her to the world. And I realized that obligation would eventually have to be taken on by Becky herself.

I've heard dwarf adults say that, from childhood on, they've been treated as if they're always on display, never anonymous, never able to blend into the crowd. I once heard a woman--an attractive thirty-nine-old mother of four who happens to be four-foot-two--lament that she can't even get out of the mall without fielding questions about what it's like to be a dwarf.

Whenever Becky and I go about our business near our home in Danvers, a suburb on Boston's North Shore, people-- kids and adults alike--are always stopping, rolling down their car windows, waving, and saying, "Hi, Becky!" Because of her hearing problems, compounded by a certain congenital obliviousness, I sometimes have to give her a nudge before she'll wave back. And at least half the time she can't tell me the names of the people who've just greeted her. They know her; she doesn't know them. They're anonymous; she's not. They can choose whether to wave or not, to say hello or not, to drive on by or not. But she's expected to be polite and friendly at all times, to acknowledge the presence of others because they have chosen to acknowledge hers.

I have come to understand that Becky must learn to be an ambassador--a visiting dignitary from the Land of Dwarfism, always upbeat, always polite, always on. It may not be fair. It may not even be possible. But it's there, all the time, tied up in our cultural fascination with difference, with otherness. Dwarfism, in effect, functions as a metaphor for that fascination, inspiring laughter, fear, revulsion, condescension--but never the sort of half-conscious non-reaction we normally experience when encountering ordinary people going about their ordinary lives. Dwarfs, too, are ordinary people leading, for the most part, ordinary lives. Yet they invariably provoke an extraordinary reaction.

This book tells Becky's story. But it also tells my story, a father's story--and that of a people, a race even, whose members are no different from anyone else except for the way they look, and yet whose difference has cast them in the role of perpetual outsiders. Above all, it is the story of my quest to find meaning in that difference.

***

REBECCA ELIZABETH KENNEDY was born on August 29, 1992. My education about dwarfism--and about our culture's conflicted attitudes toward people who are visibly different--began a week and a half later, in a nondescript office in downtown Boston. I can't say there was any real sense of drama in that moment. Barbara and I had already been told that Becky had achondroplasia, which is the most common form of dwarfism. We knew there was little likelihood of that diagnosis being wrong. Still, when the pediatrician had suggested we take Becky to see a geneticist, we readily agreed, figuring we'd learn--well, who knows?

We live in a culture of entitlement, and one of those supposed entitlements is the right to have perfect children--that is, children who are conventionally attractive, intelligent, even-tempered, and well-behaved. Maybe somewhere in the backs of our minds--or, to be more honest, in the back of my mind--I held out the possibility that there really was nothing wrong with Becky. That the doctors who had examined her in the local community hospital couldn't tell the difference between normal and abnormal. Becky was a fairly typical-looking newborn, and at that point I found it impossible to imagine--emotionally, if not intellectually--that her genetic programming would stop her from growing when she reached the four-foot mark. How, I wondered, could they be so sure?

That last sliver of psychic defiance evaporated as soon as we were called into the geneticist's office. The doctor--a well-manicured, middle-aged woman in a business suit, not a white coat or stethoscope in sight--put us at ease with her direct, friendly manner. She explained that x-rays of the bones in Becky's arms and legs had confirmed her achondroplasia. She examined Becky and showed us several subtle characteristics that proved she had achondroplasia: a slight separation between the third and fourth fingers of each hand--sort of a permanent Mr. Spock greeting-- and fatty deposits on the small of her back. There were less subtle signs, too, such as the soft spot on the top of her head, which wasn't really a spot at all but rather encompassed pretty much her entire skull from the ears up.

There was more. Following this brief examination, we reconvened in the geneticist's office, whereupon her voice took on a portentous tone.

"I want you to know," she told us, looking grave, "that there really wasn't anything you could have done about this."

A slight pause ensued before I responded, "What do you mean?"

She explained that achondroplasia couldn't have been detected by amniocentesis or any other tests given early in pregnancy to determine whether the fetus has some sort of genetic disorder. (This is no longer true, but, for now at least, it might as well be: even though the genetic mutations that cause achondroplasia and several other forms of dwarfism have been discovered in recent years, they are not yet included in routine genetic screening--as, say, Down syndrome is for women who are in their mid-thirties or older.)

For a moment, I was dumbfounded in the literal sense of that word, at a loss as to what she was driving at. Then, one of us--I'm no longer sure whether it was Barbara or me--figured it out, and asked her if she meant there was no way we could have found out in time to terminate the pregnancy. I'm pretty sure that's how we put it, too--"terminate the pregnancy." There was, after all, a living, breathing baby in the room, wiggling in Barbara's arms, and we were talking about her. Somehow it would have seemed obscene to say "abortion" out loud, even though Becky was many months away from understanding that or any other word.

"Uh, yes," the geneticist responded, looking distinctly uncomfortable. Given the choice, she added, many expectant parents--maybe most--would choose to terminate. Well, we wouldn't, we replied with some defiance.

And with that, our appointment began to draw to a close. The doctor recovered enough of her composure to congratulate us on having such a beautiful baby--no small thing for parents who've just been told their child has a major genetic condition-- and gave us some literature from Little People of America, an organization about which we would learn much in the months and years to come. She also told us that, in all likelihood, Becky would enjoy normal health, normal intelligence, and a normal life span. As we were leaving, Barbara and I admired Becky anew, and asked ourselves, with a mixture of smugness and incredulity, how could anyone talk about terminating this?

But is it really so simple? Our convictions, after all, couldn't be separated from the healthy baby who was with us right at that moment. What about months earlier--say, during the first trimester of pregnancy, when, at least according to legal and cultural norms, the stakes were lower? What if we had learned Becky would be born not with dwarfism but, rather, a fatal genetic defect, or one of those horrible degenerative conditions that seem to crop up regularly on the front page of the local paper, with photos of a sick-looking kid and his stoical parents beneath headlines such as "Benefit Walk Scheduled for Courageous Youngster"? What if it were something more difficult and challenging and heartbreaking than mere short stature--like mental retardation or blindness or deafness or some profound disfigurement that would frighten children, disturb adults, and require years of chancy surgery?

For that matter, what if we had known that within five months of being born, Becky would nearly die when a common virus invaded her respiratory system, overwhelming airways that, because of her dwarfism, were smaller than a normal baby's and twisted in such a way that her oxygen supply was nearly cut off. That she would have to undergo a tracheostomy and spend two difficult years breathing through a tube in her throat. That our home would be transformed into a miniature medical center, filled with air tanks and oximeters and beeping alarms and nurses who watched Becky at night so that Barbara and I, exhausted from tending to her needs during the day, could get something like a normal night's sleep. What would we have said if we'd known all this when Barbara was ten weeks pregnant?

I'm framing this as though the issue were abortion, but it isn't. Rather, this is about a considerably more profound issue: the differences between human beings, whether we fear those differences, whether we value them, whether we would stamp them out if given the opportunity. The geneticist had brought up another matter as well. She told us there was an experimental operation, pioneered in Russia, to lengthen a dwarf's arms and legs so much that they appeared almost normal. (I'm using the word "normal" advisedly; I would later learn that those in the dwarf community prefer to use the term "average size" to describe folks who are not dwarfs. As with race, gender, and sexual orientation, there is a whole vocabulary of politically correct language preferred by many dwarfs and their families that is violated at one's peril.) The surgery, she explained, was extremely painful and sometimes resulted in life-threatening side effects such as infections and nerve damage. She was--to her credit--adamantly opposed to putting a child's life at risk simply to make her appear more like everyone else. Yet she added that she had had parents in her office requesting, demanding information about the surgery, insisting that their child needed longer arms and legs in order to enjoy a normal-- that word again--life.

We could live with that. I mean, what choice did we have? Now, the case against such surgery isn't airtight. Dwarfs must move about in a human-made world designed for people between five feet and six feet tall. If you're four feet tall, you get stared at. But it goes well beyond that. You also can't reach ATMs (not all of them, anyway), drive a car without special adapters, adjust a showerhead, or get the cereal off the top shelf without a step stool. A dwarf's short arms make personal hygiene difficult as well. Some dwarfs who've undergone limb-lengthening surgery are quite happy with the results, and they say that reports of pain and infections have been exaggerated. But limb-lengthening is, at root, a statement of deep cultural discomfort with difference. It's sadly ironic that it is most successful when performed on adolescents, who desperately want to look like their peers. By the time a dwarf is in her twenties, limb-lengthening is much more difficult. Of course, by then, her maturity and self-image may well have developed to the point that she'd no longer want the surgery in the first place.

We live in a culture of entitlement, and one of those supposed entitlements is the right to have perfect children--that is, children who are conventionally attractive, intelligent, even-tempered, and well-behaved. We all expect our children to be like those who populate Garrison Keillor's Lake Wobegon, where everyone is above average. With adults embracing the ethic that bigger breasts or thinner thighs or a longer penis are just a surgeon's scalpel away, it's not surprising that they would transfer these attitudes to their offspring as well. Some kids with Down syndrome undergo surgery to make their eyes look less "mongoloid," and studies show that a substantial minority of people-- perhaps 10 percent or so--would choose abortion if they learned that their fetus would have a genetic predisposition to obesity. Obesity!

These attitudes are juxtaposed against a backdrop of incredible scientific change. The decoding of the human genome will eventually make it possible to diagnose in utero all sorts of conditions and predispositions and characteristics. Within a few years, or a few decades, it may be possible to screen routinely for, say, the hundred most common genetic conditions, a category that would include achondroplasia and several other types of dwarfism. Will it become just as routine for doctors to recommend termination? What if insurance companies withdraw coverage from would-be parents who refuse to abort a fetus with a genetic condition?

What happens a few decades or a few centuries from now, when we are well past the primitive abort-or-don't-abort conundrum and instead routinely alter the genes of embryos to eliminate a predisposition for stupidity or fatness or manic depression or homosexuality or a mean streak or a tendency to watch holographic sitcoms while talking to your friends on the videophone instead of doing your homework right now, young lady? Will we all be the same? Will we all be above average?

***

THERE ARE THOUGHT to be somewhere between thirty thousand and fifty thousand people in the United States with some type of dwarfism, of which there are about two hundred or more different varieties. The definition of dwarfism itself is difficult to pin down. Little People of America defines it as a medical or genetic condition that usually results in an adult height of four-foot-ten or less, with no distinction made between men and women. Medical definitions vary. I saw one that attempted to define dwarfism in statistical terms: someone whose height is in the lowest 0.25 percent of the general population. By this measure of dwarfism, the adult height limit for men would be five feet and one-half inches, and for women, four feet eight inches.

But if you go to a Little People of America gathering, you'll quickly see that there's no need to pull out a tape measure: the vast majority of dwarfs in LPA are about four feet tall, with a substantial minority who are quite a bit shorter than that. In part, this may be because people who are close to the limit-- taller dwarfs, if you will--see no need for LPA. Mainly, though, it's because the most common types of dwarfism result in an adult height of somewhere between three feet and a little more than four feet tall.

By far the most common type of dwarfism is achondroplasia, responsible for perhaps two-thirds or more of all cases. Studies show that about one in every twenty-six thousand to forty thousand babies is born with achondroplasia. The vast majority of the parents--around 85 percent--are not themselves dwarfs; that is, they are "average size."

Because achondroplasia is a genetic condition--a genetic defect, really, though some in the dwarf community don't like such harsh terminology--it is present at the moment of conception. It makes no sense for me to wish Becky didn't have achondroplasia because without it, she wouldn't be Becky. An achondroplasia-free child would have required a different sperm (the mutation is believed to originate with the father) or a different egg, and thus a person with a completely different genetic endowment. Some damaged bit of genetic material was present at the creation during our lovemaking, and unlike most such occurrences--which are incompatible with life, and which result in miscarriages, many of them so early that the woman doesn't even realize it's happened--this one did not prevent a fetus from taking hold in the womb.

Until the genetic basis for achondroplasia was discovered, it was thought that it somehow involved a failure of the cartilage to develop into normal bone. In fact, the word achondroplasia, which is derived from Greek, means "without cartilage formation." Now scientists understand that achondroplasia is actually caused by a gene mutation that affects the body's ability to regulate how much bones should grow and when they should stop growing.

Achondroplasia belongs to a broader group of dwarfing conditions known as skeletal dysplasias, all of which are genetic disorders that affect bone development. There is essentially no treatment; giving growth-hormone shots does little or no good, although such shots can help with a rare condition known as growth-hormone-deficient (GHD) dwarfism, which is caused by a hormonal imbalance rather than a bone disorder. (GHD dwarfs, whose proportions are the same as an average-size person's, used to be called "midgets," though that is now regarded as an offensive term. "Dwarf" and "little person" are generally acceptable in describing a person with any type of dwarfism.)

The genetic mutation that causes achondroplasia is dominant, a term you may remember from high-school biology classes about Gregor Mendel and peas. Each of our inherited characteristics comprises two genes, one from our mother and one from our father. When a characteristic is dominant, only one of the two genes needs to be affected. An average-size person cannot be a carrier of achondroplasia, since if you inherit just one mutated gene, you're a dwarf. Thus, average-size parents who give birth to an achondroplastic child might as well have gotten a personal visit from Ed McMahon bearing a check with a dollar sign followed by lots of zeroes: it is the result of a random genetic mutation, and has nothing to do with their own family history. (As far as Barbara and I know, there have been no dwarfs in either of our families.)

Many other genetic conditions, including some types of dwarfism, are recessive, meaning that you have to inherit mutated genes from both parents in order to have the condition; if you inherit just one mutated gene, you are unaffected, though you are, indeed, a carrier. Conceive a child with another carrier and that child has a one-in-four chance of inheriting the genetic mutation from both parents, and, therefore, of having the condition.

When someone with achondroplasia has a child with a person who is average-size or who has a different type of dwarfism, the likelihood of passing on achondroplasia increases to 50 percent. In fact, such mixed couples are just as likely to have a healthy achondroplastic child as are couples in which both partners have achondroplasia. That is because of an immutable fact of genetics known as double dominance.

Here's how it works. The child of two achondroplastic parents has a 25 percent chance of not inheriting the mutation from either parent, and would thus be average-size (an unaffected gene from each parent); a 50 percent chance of being a dwarf (an affected gene from one parent, and an unaffected gene from the other); and a 25 percent chance of inheriting the mutation from both parents, the aforementioned double-dominant condition, which inevitably leads to death shortly after birth.

Such heartbreaks could not be prevented until 1994, when a research team led by the late John Wasmuth, of the University of California at Irvine, identified the genetic mutation that causes achondroplasia. Concerned that his discovery might be misused, he invited officers of Little People of America to the news conference at which he announced his findings, and expressed the hope that prenatal testing for achondroplasia would only be used by dwarf couples seeking to learn whether their child would inherit the fatal double-dominant condition. Still, Wasmuth clearly knew his discovery would eventually make it more difficult for achondroplastic children to come into the world. As that geneticist in Boston had told us in 1992, two years before Wasmuth's announcement, There really wasn't anything you could have done. But that was then. When Barbara was pregnant with Becky, we opted not to have her undergo amniocentesis. But if accurate pre-natal screening that was not potentially harmful to the fetus had been offered, and if such screening included achondroplasia-- well, as I said earlier, who knows? I'm reasonably sure we wouldn't have been congratulated and given literature about Little People of America; instead, I imagine, we would have been pressured, subtly or otherwise, to choose abortion. All under the additional pressure of knowing that with each passing week our decision would become that much more difficult.

***

IN THOSE FIRST months after Becky was born, I'd often find myself walking around with my right hand extended in front of me, level, palm down, squinting, measuring, adjusting. I was commuting by train and subway that fall, so I saw hundreds of people every morning. I'd look for the short ones, the women in particular, and try to figure out their height, where the tops of their heads would be if they were standing right next to me, how that compared with the unexpected new reality of our lives. I'd squint again, move my hand up, then down. Here? Maybe a little lower? Look at that woman over there. She couldn't be much more than four feet. She doesn't look too bad. We could live with that.

Later, when my focus had shifted from the train station to the hospital, from How tall will she be? to Will she come out of this okay?, I understood that I'd had it all wrong. I'd been holding my hand out in front of my chest; I should have moved it down to my waist. The short women I'd been looking at were just that--short--and nothing more. They weren't burdened by anatomical anomalies that could cause life-threatening medical problems, complications that could develop over a period of years or, as we were to learn, at a moment's notice. They didn't get stared at (except by me), pointed to, called "Midget!" behind their backs--or right to their faces. They didn't need to ask for help in pressing an elevator button. They didn't drag themselves up the curb as though they were working out on a singularly diabolical exercise machine.

In other words, they weren't dwarfs. Becky, I realized, was the first dwarf I'd ever seen, not counting television or maybe once or twice in the flesh, in a crowd, off in the distance, somewhere, maybe. As an adult, Becky would be four feet tall, give or take a couple of inches--and yes, her head would be larger than most people's, and yes, her arms and legs would be tiny, and yes, she'd waddle when she walked.

We could live with that. I mean, what choice did we have?

I've long since put my hand back in my pocket. Height is not an issue in our home. When I was growing up, my father would measure me every so often, his pencil marks clearly visible on the doorjamb next to the bathroom for years after I'd reached my full six-foot height. Not so in our house, not even for Tim, who's well on his way to being a six-footer himself. From the time she was old enough to understand, we've been telling Becky that size doesn't matter, that she would grow up just like everyone else, even though she wasn't going to grow up. She struggled with this, told us she didn't want to be a "dorf" because she didn't want to be a kid forever. She kept this up even though she'd seen dwarf adults, even though one friend, in particular, had been to our house on several occasions with her own adopted son, who's also a dwarf, and had gone out of her way to show our daughter the pedal extensions she uses so that she can reach the gas and the brake in her car--the ability to drive, of course, being sure proof of adulthood.

Having worked so hard to convince Becky that height didn't matter, it would have been hypocritical or even harmful for us to cluck approvingly over each quarter-inch she'd managed to gain, to mark it on the wall as if it were some sort of accomplishment. The motto of Little People of America is "Think Big." It's a harmless, benign message from the organization's early days in the late 1950s and early 1960s, an artifact of a less contentious, less politically charged era. But I suspect that if LPA members today were to take a second look at their motto, they'd come up with something different.

Len Sawisch, a psychologist and disability-rights activist from Michigan who's also a dwarf, says that telling dwarfs to "think big" makes about as much sense as telling African-Americans to "think white." Think big? Hey, short is beautiful, baby.

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"Little People": Introduction

Little People: Introduction

In late 2000, when I wrote the proposal for what would eventually become this book, it never occurred to me that one day dwarfism would become a hot topic. Yet as I write this introduction, nearly seven years down the road, people with dwarfism suddenly find themselves in fashion. It is a strange and startling turn of events.

Perhaps the most visible symbol is the TLC television series Little People, Big World, a reality show starring the dwarf couple Matt and Amy Roloff and their four kids. This, too, I find rather startling. Matt is a former president of Little People of America, and we worked together for several years when I was the volunteer editor of the organization's website, LPA Online. I interviewed Matt and Amy for this book, and Amy once gave me some advice on finding a clarinet that would be short enough for our daughter to play. I could not have imagined that the Roloffs would be transformed into television stars.

And the Roloffs are only the most visible manifestation of this trend. Because pop culture is so important in shaping our perception of reality, it's not surprising that our changing attitudes toward dwarfism are reflected in the entertainment business. Yes, there are still plenty of stereotyped roles for dwarfs, from Mini-Me to Mini-KISS. But the actor Peter Dinklage and the actress Meredith Eaton, to name the two most prominent examples, have shown that audiences are willing to accept people with dwarfism as filling the same kinds of roles that were formerly reserved for average-size performers.

Yet if dwarfism is more accepted than it has been in the past, its rarity is likely to ensure that people with dwarfism will never quite be considered mainstream. Which brings me back to the beginning--with the birth of our daughter, Rebecca Elizabeth Kennedy, on August 29, 1992. Becky, as you will learn, has achondroplasia, the most common form of dwarfism. It has shaped her life in ways that are both profound (the respiratory virus she caught when she was five months old was life-threatening mainly because of dwarfism-related complications) and subtle (her attention-deficit disorder may be related to her slight hearing loss, a common consequence of achondroplasia).

From its inception, this book had two intended audiences: families affected by dwarfism and other disabilities, whom I hoped could learn from our experiences; and a wider readership that might be interested in the history, culture, and science of a rare and little-understood condition. Unfortunately, my publisher, Rodale, allowed Little People to go out of print within the past couple of years. I hope this free Internet edition might spark enough interest in the book that it will lead to some enterprising publisher's wanting to bring out a paperback edition. Whether that happens or not, at least the book will be available once again.

I have made a slight change to the title. Originally Little People: Learning to See the World Through My Daughter's Eyes, I have renamed it Little People: A Father Reflects on His Daughter's Dwarfism--and What It Means to Be Different. Though more unwieldy, it better reflects what the book is about and what I hope readers will take from it. Other than that, the book is virtually unchanged.

When I finished Little People in the spring of 2003, Becky was just ten years old, finishing up the fourth grade. Today she is a happy, healthy almost-fifteen-year-old, getting ready to begin high school this fall. She's a Girl Scout; she acts in school plays; she took part in her eighth-grade class trip to Washington, a trip I was lucky enough to help chaperone; and she is such an accomplished young writer that she won an award in a Harry Potter essay contest sponsored by a local bookstore. She's doing incredibly well--as well as we ever could have dreamed during those dark days of 1993, when our home was a blur of visiting nurses, beeping monitors, and whooshing oxygen tanks.

Yet Becky's life will continue to be shaped by the fact that, at four feet tall, she is already about as tall as she'll ever be; that her arms and legs are impossibly short; that she sways back and forth when she walks down the street. There's never been a better time to be different; but difference is still something we'd rather keep at a distance if we can.

It's one thing to get to know the Roloff family: after all, they're safely ensconced on the other side of the screen. It's quite another to grant my daughter the same respect and opportunities as anyone else. It's a difficult challenge, and it's one she'll face for the rest of her life.

Dan Kennedy
Danvers, Massachusetts
July 2007

Note: "Little People" will be presented chapter by chapter each Sunday.  A hardcover copy, signed by the author is available for purchase here.

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Little People Table of Contents

LITTLE PEOPLE by Dan Kennedy

Table of Contents

Introduction  ::  Chapter One  :: Chapter Two
Chapter Three  ::  Chapter Four

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