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Carpenter syndrome

Carpenter's syndrome is an extremely rare craniofacial disorder. There are currently around 40 reported cases.

Carpenter's Syndrome is characterized by:

  • Tower shaped skull
  • Additional or fused fingers and/or toes
  • Obesity
  • Reduced height

Mental deficiency is common in people with Carpenter's Syndrome, although a few sufferers enjoy an average intellectual capacity.

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Civic housekeeping: Jean Elshtain on mothering and other duties - Interview - Biography
From Christian Century, 5/17/03 by Wendy Murray Zoba

JEAN BETHKE ELSHTAIN began her career by challenging traditional gender roles--the assumption that the public realm is primary and belongs to men, and that the private realm is secondary and belongs to women. Characteristically, she applied her analysis in unpredictable ways, as indicated by the title of one of her early books, Women and War. The place of women in the conduct of war was not a typical feminist concern. Further complicating her feminist vision was Elshtain's fierce defense of women's work in the domestic sphere. The moral imperative women have felt to shape the home, she argues, has empowered women and advanced culture.

Elshtain has made a career of rankling both the left and the right. Her latest book, Just War Against Terror (Basic Books), asserts that the U.S., being the world's sole superpower, is obligated to rescue the victimized and defend the peace, and that this responsibility may entail going to war. In 2001, this same concern for defending victims led her to appear before a House subcommittee to argue for the prohibition of human cloning. We are a nation that "will not permit the emergence of unused 'products,' failed clones, poor misbegotten 'children' of our distorted imaginations."

Elshtain is Laura Spelman Rockefeller Professor of Social and Political Ethics at the University of Chicago Divinity School and the author of 19 books, including Jane Addams and the Dream of American Democracy (Basic Books). She was the first woman to hold an endowed professorship at Vanderbilt University, and she recently received the Goodnow Award from the American Political Science Association for lifetime accomplishment.

She is a teacher, philosopher and public intellectual. She is also a wife, mother and grandmother, and now a mother (again). A strong advocate of women's roles in public life, she is unstintingly committed to family and mothering. Despite Pope John Paul's narrow view of women's roles in the church, she hails him as a heroic moral figure. She bristles at the way some feminist thinkers depict women as victims and has little sympathy for leftover ideologies from the late 1960s that reject institutions and authority. Yet she dedicated Women and War "to the memory of John Lennon," because the Beatles' music was so "life-affirming," she says, and because "the solemnity of the academy gets to me."

In these times, when the fear of unregulated violence hovers in people's consciousness, Elshtain is trying to think through risks and options in the light of moral conscience. She understands the power of evil--that evil conspires against law and moral order, and that it cannot be quenched by men and guns alone, or even women and guns. Still, she thinks attempts must be made to contain evil and disorder, and that such attempts must sometimes involve force. On the local level, such vigilance is a kind of "civic housekeeping"--a term inspired by the social reformer Jane Addams. On the international level, she argues that "concrete neighbor love" sometimes must be acted out in the face of "harsh necessity."

Born in 1941, Elshtain started learning about housekeeping and harsh necessity as the oldest of five children growing up in Timnath, Colorado, population about 185 then (and now). Her father was a superintendent of the town school. Her mother arose from earthier stock--Volga-German immigrants from Russia who worked in the sugar beet fields in northern Colorado. Helen Lind Bethke never saw schooling beyond the eighth grade because the family needed her help in the fields. "There was a kind of severity about her from time to time," says Elshtain of her mother. "But I understood it on some level." Helen "was fiercely dedicated to her family and worked very hard to leave a powerful family legacy."

Young Jean read voraciously, which met with approval from both parents until she became enamored with Ernie Pyle's war dispatches. At the age of nine she used her 4-H Club money to purchase a subscription to Time magazine. At about the same age she cut off her hair to emulate Ingrid Bergman as she appeared playing Joan of Arc in the 1949 movie about the saint. These were her heroes: the war reporter and the female warrior. Elshtain recalls this era of her life in Women and War: "One day I would be a leader of men, too. Maybe a warrior. Maybe a martyr--though there didn't seem to be much call for martyrs anymore." During her "Joan of Arc era," she says, "I begged for my own gun."

She was fascinated with war but repulsed by hunting. War intrigued her, she says, because "it is a field that put human beings in the severe form of testing of human courage and self-sacrifice and human depravity and the kindling of murderous rage." It forced to the surface "the extremes within the repertoire of human possibility." Hunting appalled her because it is "nothing like self-defense or just-war fighting, but stalking and killing an unarmed adversary who rarely fights back," she writes. "Hunting, if it prepares a man for anything, prepares him for achievement in isolation." And human beings can't be in isolation and still be fully human, she would say.

ELSHTAIN experienced some of the strength of human connections in 1951 --the peak of her Joan of Arc era--when she contracted polio. "I was spirited away by ambulance from this little town to the Children's Hospital in Denver." Her father was able to be with her for the ride, but was quickly removed from the scene for fear of contagion. They withdrew fluid from her spinal cord ("no anesthesia, of course") and then put her in isolation for two weeks. "The only person I saw during that time was a nurse who, you could tell, did not want to deal with it. She'd put a meal down and leave a bedpan. I was lucky compared to what some kids went through," she says. "I didn't have to have an iron lung.

"They left you lying there for two weeks because there was this theory that you were infectious or might be, so nothing was done. In the meantime this virus courses through your body killing nerve ganglia, which means messages can't get to muscles, so the muscles start to atrophy. Rather than maintaining a regimen of movement and exercise, which would have been the best thing, they left you isolated."

After the two-week isolation she was moved into a ward jammed with children on cots. There they underwent a therapy known as the Sister Kenny treatment, introduced by a nurse from Australia, which involved wrapping the naked children in steaming wool blankets to relieve muscle spasms. Little thought was given to the potential for burns, and children were frequently left to shiver as the blankets grew cold and clammy.

"I couldn't see my sisters and I missed my dog," she recalls. "Then my mother did something astonishing. She thought, rightly, that kids shouldn't be separated from their families. So my mother, who had never been out of these little rural areas, took the nurse's training course, went to Denver, took a room in a crummy section of town, and got a job as a nurse's aid in Children's Hospital so she could come in and see me." The hospital staff eventually discovered the connection and moved her mother to a different ward. Still, she managed to sneak in and visit her little girl as often as she could. Her parents convinced the doctors she could receive better treatment at home.

Though doctors said she'd never walk, Jean didn't believe it, and her parents refused to surrender. Both parents took courses in physical therapy, and her grandmother, an accomplished carpenter, crafted a padded therapy table and a special bookcase that her bed could slide under so Jean could reach books.

"I remember one day, maybe a year after I contracted polio, I decided to slide over the bed and try to take a step. I managed to balance on my left leg long enough to quickly move my right. Then I tried to take another step and fell down, of course. I crawled back and climbed into bed. I didn't want to tell anybody until I could actually do it."

She eventually did it. She moved from the wheelchair to a full brace with crutches and from a full brace to a half brace and then to a brace below the knee. She underwent extensive surgery that manipulated muscle tissue and tightened the Achilles tendon so her foot wouldn't drop. Like other polio veterans, she has recently discovered the effects of postpolio syndrome, in which the nerve ganglia that took over for the damaged nerves essentially wear out.

After polio, she says, Joan of Arc faded away. Or one might say Joan was reborn. Jean was forced to conceive of a different kind of battlefield with a new set of roles. Combating polio, she says, "either wipes you out or you become a little fierce. You hope you can use that to good purposes."

At 18 she married her high school sweetheart and soon bore three daughters. The first girl, Sheri, was born with mental retardation, which her husband could not accept. Jean left the marriage after five years, which scandalized her family. Her second husband, Errol Elshtain, whom she married in 1966, adopted the three girls and together they had a son of their own. They have since adopted grandson Bobby.

Her resolve to use her personal straggle to "good purposes" has been informed, in part, by one of her favorite writers, Albert Camus. "There's a line of his I use over and over again--that we're obliged not to impose our own inner ravages upon the world. We all have our places of exile and anger and repudiation. But it's our responsibility to hold these in check."

WHEN SHE WAS earning a Ph.D. in politics at Brandeis University, Elshtain was also a wife and mother. She was contending at once with the philosophy of Hegel and what to cook for supper while the baby fussed. "How do you keep these multiple goods alive in yourself and in the society at large?" she asked herself during this frenzied time. "I felt I had to find a way to be faithful to all [of the demands]. "Which is where she has parted company with some radical feminists.

"One of my objections to radical feminism is that I think you don't repudiate the family; you don't start attacking motherhood. Number one, you can't do without mothers, and number two, think of all the woman throughout history and the contributions they've made in that way and how brutal social life would be without that." She refers to mothering as an "animating ethos."

"Women had a powerful imperative to say to the men, 'Let's settle down,' wanting a safe abode for their children. That thereby helped to create the basis of civilization and culture as we came to call it," she says. "This determination to see that offspring survive is the basis of a lot of the developments of culture."

The so-called "powerlessness" of women developed as the agricultural way of life evolved into a more industrialized model wherein gender roles became more defined. "The men handled the outside stuff and there was a lot the women did domestically." She says that radical feminism has carried this sense of powerlessness to extremes, suggesting that women have "always been crushed and stymied in their aspirations, as if historically women didn't exercise any agency in the way in which they fill out the vocations available to them." This critique, she says, "in the name of feminism oddly diminishes the powerful role that women have played in history and culture."

Her model for applying the animating ethos of mothering to civic life is Addams (1860-1935), founder of Hull House, a settlement house in Chicago. Addams herself never married and had no children, though she became guardian of her sister's youngest child when her sister died of typhoid fever. Yet the spirit of Hull House was fueled by a sheltering, maternal impulse, expressed in care for one's neighbor.

Conceived during the Social Gospel movement, Hull House became a haven for immigrants needing refuge, education, lessons in English, vocational training, exposure to the arts and literature. Hull House provided day nurseries, kindergarten, playgrounds and clubs. It also provided a cooperative boardinghouse, theater workshops, music schools, language classes, reading groups and handicraft centers. When Addams realized that many of the immigrants were dirty because their tenement houses had few bathtubs, she put five bathrooms in the rear of Hull House and made them available to the neighborhood. The bathrooms were as popular as her art gallery.

Addams didn't consider what she was offering as philanthropy or benevolence, and she maintained that there is mutual dependency between the social classes. In fact, Addams would be offended by those who suggest Hull House was a precursor of the modern welfare system that makes people dependent upon the state.

"Her favorite words were 'to ameliorate' and 'to mitigate,' says Elshtain. "She didn't believe in violent revolutionary change [but rather in] building a culture of democracy. She didn't go for the showy thing but for the hard work of building up cultural institutions. She knew that you can't effectively alter anything without institutions."

Addams believed there must be a balancing of domestic and social claims. In the neighborhoods where she worked, social realities made family life difficult: long hard hours of work for low pay, both parents needing to work, little children left alone and older children needing to work to help the family.

Elshtain quotes Addams: "If you don't take charge of a child at night you can't feel a scared and trembling little hand grow confiding and quiet as soon as it lies within your own." Addams's challenge, says Elshtain, "was to see the family as part of a web of social imperatives and forces without ever losing sight of that one little hand." In other words, responsibility for one's neighbor attends citizenship. "We are all citizens--nobody's father; nobody's mother," says Elshtain. "Still, mothering is a practice whose animating ethos can fruitfully be brought to bear when we think about all things political."

HOW DOES "the animating ethos of mothering" bear up when faced with, say, the renegade regime of Saddam Hussein? Elshtain says that the same accountability that exists between citizens must also apply to the international sphere. "The question is, Are there ways to ameliorate some of these struggles so that you don't have open conflict?"

Especially since the Carter administration, Elshtain notes, the United States has tried to embody in its international policy a commitment to human rights. This commitment is "a moral commitment," she says. "It is part of our basic policy. But it also builds in restraints. If you stand for a culture of human rights, you don't want to be a violator of human rights."

In discussing Iraq, terrorism and international conflicts, Elshtain invokes the "just war" tradition, formulated by Augustine, which speaks of "just cause" (jus ad bellum) for war and insists on the "just means" (jus in bello) of fighting war. A country might go to war by applying just war principles, yet still violate the principles of just means.

Elshtain thinks the standard for just cause in responding to terrorism was met easily in the light of the attack on the U.S. on September 11, 2001. But what about the case of Iraq? In September 2002, when a hundred scholars and ethicists signed a petition that read, "As Christian ethicists, we share a common moral presumption against a preemptive war on Iraq by the United States," Elshtain was not numbered among the signatories. She felt the statement did not demonstrate a thorough examination of all aspects of the issue. She concluded that the just war tradition does not throw "insuperable barriers" to a war on Iraq. Still, she was uncertain: "While jus ad bellum, the occasion for a resort to force, is met and the rules of engagement meet jus in bello stipulations, the unknowns are such that prudential considerations tell us to stay our hand." In other words, meeting just war criteria does not oblige one to act.

She thought that weapons inspections "had been tried and found wanting." "There's a lot of wishful thinking going on about the power and efficiency of the UN. How many times do you allow yourself to be taken on a walk down the primrose path?

"'Just peace' is precisely what animates just war thinking," she says. "If an unjust peace exists, deterrence is the only option and considerations of justice drive a resort to force in order that a 'just peace' is the end result."

In Just War Against Terror Elshtain argues "that true international justice is defined as the equal claim of all persons in the world to having coercive force deployed in their behalf if they are victims of one of the many horrors attendant upon radical political instability.... The principle I call 'equal regard' ... must sometimes be backed up by coercive force. This is an ideal of international justice whose time has come."

She acknowledges that "politics is always making decisions in a world of imperfect information. You are obliged to act on the best you can know. These are judgment calls. You bump up against uncertainty all the time because you never know the consequences of action or not acting." Recalling the strategy of appeasement that ultimately enabled Hitler to conquer most of Europe, she says that "to concentrate only on the consequences of acting is only half the job."

Several weeks into the war with Iraq, Elshtain expressed confidence that the American and British forces in Iraq had not intentionally targeted noncombatants. "Everyone knows that civilians will come in harm's way during a conflict. But everything possible must be done to minimize the damage." She was heartened by the fact that "over 90 percent of the aerial weapons in the U.S. arsenal deployed in the Iraq theater are precision-guided weapons. These are weapons of extraordinary accuracy and reduced lethality. Such weapons make it more rather than less likely that the principle of discrimination can be met; indeed, there are now fewer excuses than ever before in modern high-tech warfare for massive 'collateral damage' to occur."

She also thought that the conduct of the war had met the just war principle of proportionality, which calls for using the minimal level of force needed to achieve the intended object. She cautioned that if one presumes the only way to win a war is through escalation, then this principle is likely to be violated. She argued that the opposite seemed to be happening in Iraq, particularly in the air war. Whereas the bombing of Iraq was initially widespread, though targeted at strategic sites, most of the air activity after the first two weeks was "in tactical support of ground troops. That is a story of deescalation, not escalation, and it helps to make the case for proportionality."

Still, she says, war should be approached in the spirit of Dietrich Bonhoeffer, the theologian who aided the attempt to assassinate Hitler. "The reason he did so was 'concrete neighbor love' in the face of 'harsh necessity,' says Elshtain. "He didn't justify it--so it wouldn't become normative. He said, 'I stand before God a guilty person.'"

ELSHTAIN pricks the conscience by applying the animating ethos of mothering to national and international struggles. It's the same impulse that moved her and her husband to adopt Bobby, the son of her retarded daughter, Sheri. Bobby could not be cared for by Sheri and her husband, who is also mentally retarded, so Jean and her husband took him in when he was three weeks old. Bobby is now "a big first grader." He is the reason she keeps the "draconian schedule" of maintaining the family home in Nashville, where her daughter and husband and their children live, and commuting to Chicago to teach.

"The Lord works in mysterious ways," she says. "You decide you're not going to let this child fall through the cracks," the way her parents and extended family did not let the ten-year-old Jean fall while battling polio. "It is a solemn responsibility," she says.

Her sense of human dignity is steeped in her Christian faith. She describes herself as "still on a pilgrimage" somewhere between Wittenberg (Lutheranism) and Rome (Catholicism), drawn to the solemnity and profundity of the Catholic mass, though not having converted. "I went to mass in the pope's private chapel where he was conducting high mass in Latin. You could see John Paul at the altar and the intensity of his prayer was palpable. A group of nuns began to chant and you knew you were in the presence of something very powerful and very mysterious and very ancient. I think a lot about the gravity of those moments, and the power of the symbolism. Everything is compressed into it, centuries of meaning and symbolism."

One of Elshtain's favorite books is Camus's The Plague. He writes in that novel that "on this earth there are pestilences and there are victims, and it's up to us, so far as possible, not to join forces with the pestilences." Elshtain has lent her voice to the victims. Her mothering impulse teaches that all of us, in a way, are children wrapped in wet blankets--and that sometimes a rescue must be mounted, like a mother who summons courage, devotion and if need be ferocity to save a child.

And so the little girl rises from her bed. In time she stands and walks, a tender-hearted but still fierce kind of Joan.

Wendy Murray Zoba lives in Black Mountain, North Carolina. Her most recent book is Facing Forward, a memoir about childhood, mothering, the midlife years and the empty-nest syndrome (Tyndale).

COPYRIGHT 2003 The Christian Century Foundation
COPYRIGHT 2003 Gale Group

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