Here are some highlights--some of you Moebius parents might especially find this interesting:
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Tuesday, June 30, 2015
DID YOU KNOW ABOUT...? CAMP FACE
You can find lots of information about it here.
Here are some highlights--some of you Moebius parents might especially find this interesting:
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Here are some highlights--some of you Moebius parents might especially find this interesting:
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Friday, June 26, 2015
ON PARENTING: HELPING KIDS DEAL WITH SCARY NEWS
All parents, of course including Moebius moms and dads, will want to read and think about this one:
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The world is full of scary news and, as much as we would like to shield our children from it we can’t always do so. As careful as I think I’m being when there is a crisis in the news, my small kids inevitably seem to pick-up on events like the Boston Marathon bombing, devastating weather events, riots in Baltimore and of course, most recently, the horrific shootings in Charleston. They find out about these events by listening snippets of adult conversations when we are out, accurately interpreting photos they see in the newspaper, or overhearing bits of news reports that I turn on when I think they are not listening.
Because we can’t protect our children from all news they may find scary, especially when it involves a national or international event, it’s important to know how to help children deal with these events when they occur.
When there are headlines that may upset children, Kyle D. Pruett, M.D, member of The Goddard School Educational Advisory Board, and clinical professor of Child Psychiatry at Yale School of Medicine recommends that you:
1. Limit screen time to non-news coverage programming for your young children. TV, smart phones and tablets all have ability to easily deliver graphic, startling images and photos of distressed adults and children that will bring the trauma very close to your child, no matter how far away you may live from the incident. Some stations even go as far as broadcasting interviews with frightened children, which will make the incident even scarier for your child. Also, the younger the child, the more likely he is to see each broadcast as a new attack – just as children saw the broadcast of September 11th plane crashes as ‘hundreds of planes crashing again and again’ your child may see images of the earthquake in Nepal as dozens of earthquakes.
2. Help your child understand your emotions and their own. Children are very sensitive to their parents’ emotions even in good times. In worrisome events, they are especially sensitive. If your child asks you if you are upset or worried, be honest, but brief, and then reassure your child that you will be fine and so will they. It is important for children to understand feelings and talking about them helps.
3. Let your child’s questions guide the conversation. When your child hears about an upsetting incident he will likely want to know more and is likely to ask for details such as: Who died? Did it hurt? Will that happen to me? Why would somebody do that? Where were the police? Were they bad people? Where were the parents? Are we at war? Before trying to answer your child’s question, make sure you heard it correctly by asking the child the question back, with a ‘What do you think?’ tacked on the end. By listening to their answer you will get a better idea of what they are truly asking about and you can address their specific concern. Remember that less is more so if a child says he thinks we are at war because he saw National Guardsmen on TV you can reassure him that the soldiers he saw are there to keep people safe and that no one is going to attack his home. Always keep your answers simple and to the level of your child’s developmental understanding.
4. Reassure children. When there is a scary event in the news children may be concerned about an aspect of their own or their family’s personal safety. Your child’s reaction to the news they hear and the questions they ask will give you an idea about their specific concerns. You can offer reassurance, such as: “We are all fine as always. This happened far way away (if true).” Or, “The police came when the grown-ups called so no one else got hurt.” Or, “The kids hurt in the tornedo were all taken to the hospital and the doctors are taking care of them.” If you do not know the answer to a question, such as “Why would someone shoot people at church?” you can answer truthfully by saying “We don’t know why someone would do that, but it has never happened there before and probably never will again.”
5. Create a strong community. In any time of unrest or crisis, gathering friends and family provides much needed support for grown-ups and children alike. Having more people around also means that you will have more resources to share with your children.
6. Stick to routines. The unpredictable is scary for children and a predictable routine is especially reassuring when children are frightened or unsure. Being rigorous about your routines and rituals will help children feel more secure.
Jamie Davis Smith is a mother of four and freelance writer in D.C.
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The world is full of scary news and, as much as we would like to shield our children from it we can’t always do so. As careful as I think I’m being when there is a crisis in the news, my small kids inevitably seem to pick-up on events like the Boston Marathon bombing, devastating weather events, riots in Baltimore and of course, most recently, the horrific shootings in Charleston. They find out about these events by listening snippets of adult conversations when we are out, accurately interpreting photos they see in the newspaper, or overhearing bits of news reports that I turn on when I think they are not listening.
Because we can’t protect our children from all news they may find scary, especially when it involves a national or international event, it’s important to know how to help children deal with these events when they occur.
When there are headlines that may upset children, Kyle D. Pruett, M.D, member of The Goddard School Educational Advisory Board, and clinical professor of Child Psychiatry at Yale School of Medicine recommends that you:
1. Limit screen time to non-news coverage programming for your young children. TV, smart phones and tablets all have ability to easily deliver graphic, startling images and photos of distressed adults and children that will bring the trauma very close to your child, no matter how far away you may live from the incident. Some stations even go as far as broadcasting interviews with frightened children, which will make the incident even scarier for your child. Also, the younger the child, the more likely he is to see each broadcast as a new attack – just as children saw the broadcast of September 11th plane crashes as ‘hundreds of planes crashing again and again’ your child may see images of the earthquake in Nepal as dozens of earthquakes.
2. Help your child understand your emotions and their own. Children are very sensitive to their parents’ emotions even in good times. In worrisome events, they are especially sensitive. If your child asks you if you are upset or worried, be honest, but brief, and then reassure your child that you will be fine and so will they. It is important for children to understand feelings and talking about them helps.
3. Let your child’s questions guide the conversation. When your child hears about an upsetting incident he will likely want to know more and is likely to ask for details such as: Who died? Did it hurt? Will that happen to me? Why would somebody do that? Where were the police? Were they bad people? Where were the parents? Are we at war? Before trying to answer your child’s question, make sure you heard it correctly by asking the child the question back, with a ‘What do you think?’ tacked on the end. By listening to their answer you will get a better idea of what they are truly asking about and you can address their specific concern. Remember that less is more so if a child says he thinks we are at war because he saw National Guardsmen on TV you can reassure him that the soldiers he saw are there to keep people safe and that no one is going to attack his home. Always keep your answers simple and to the level of your child’s developmental understanding.
4. Reassure children. When there is a scary event in the news children may be concerned about an aspect of their own or their family’s personal safety. Your child’s reaction to the news they hear and the questions they ask will give you an idea about their specific concerns. You can offer reassurance, such as: “We are all fine as always. This happened far way away (if true).” Or, “The police came when the grown-ups called so no one else got hurt.” Or, “The kids hurt in the tornedo were all taken to the hospital and the doctors are taking care of them.” If you do not know the answer to a question, such as “Why would someone shoot people at church?” you can answer truthfully by saying “We don’t know why someone would do that, but it has never happened there before and probably never will again.”
5. Create a strong community. In any time of unrest or crisis, gathering friends and family provides much needed support for grown-ups and children alike. Having more people around also means that you will have more resources to share with your children.
6. Stick to routines. The unpredictable is scary for children and a predictable routine is especially reassuring when children are frightened or unsure. Being rigorous about your routines and rituals will help children feel more secure.
Jamie Davis Smith is a mother of four and freelance writer in D.C.
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Thursday, June 25, 2015
AWARENESS: THE EFFECTS OF FACIAL DIFFERENCE
The below is an interesting piece I originally found on CNN a couple of days ago. Now I do not love one of the words the article uses more than once--when it describes being facially "disfigured" and the like. To me, the word "difference" is much better. But--there are many fascinating insights below; and the author does a good job of examining just why it is that other, so-called "normal" people have such a hard time dealing with a facial difference. Note also that our friends at Changing Faces appear in this piece! Read on:
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"Take your ear off for me, please," Rosie Seelaus says to Randy James, who is sitting on a black exam chair in a special room designed for viewing colors in the Craniofacial Center on the Near West Side of Chicago.
He reaches up and detaches his right ear, which she created for him out of silicone seven years before. The ear is shabby, stained from skin oil and mottled by daily use. Viewed under various lights in the neutral, gray-walled room -- daylight, incandescent, fluorescent -- it remains a pasty beige.
James is a doctor with the Department of Veterans Affairs in Las Vegas -- the fierce desert sunlight is also tough on his prosthetic ear. Seelaus is an anaplastologist, a clinician who sculpts artificial body parts for people who have lost them through injury or disease or, as with James, who never had them to begin with.
He was born 58 years ago with Goldenhar syndrome, a genetic condition that distorts the fetal face, sometimes severely. Some children with Goldenhar, like James, are born missing an ear or part of an ear (he had only the right lobe). Some have bulging eyes, or no eyes at all. James's jaw was undersized and skewed. He underwent 35 surgeries, including one to construct his right cheekbone using bone shaved from his ribs. He pulls up his shirt to show off slashing scars across his ribcage.
I used to tell bullies I was mauled by a tiger at the zoo.
The first time I walked through the corridors of the Craniofacial Center, on the University of Illinois at Chicago's medical campus, I had to sit down. Not that I was going to faint, but the immediate possibility occurred to me. So I filled a paper cup with water and carefully lowered myself into a chair.
And that was before meeting any patients. Seeing the mute plaster molds of cleft faces, the blindly staring glass eyes and the little pyramids of false noses was enough. A baby's hand, made of silicone, grasped at the air.
That was 15 years ago. I'm not sure whether I was more or less scared of people with disfigurements than is average. As a child I had been terrified. Even of the small square picture on page 289 in the American Heritage Dictionary illustrating "contortionist," an early-20th-century photograph of a circus acrobat, her chin propped against the back of a chair, her body twisted impossibly above it, a foot planted on either side of her disembodied head. I would turn the pages of the Cs very slowly, steeling myself.
Most frightening of all, Cynthia Cowles, in Mrs Farmer's first grade class at Fairwood School, her eyes set too far apart, her nose flattened. We boys teased her relentlessly, so much that her mother phoned my mother, asking her to make me stop.
"I felt helpless," my mother told me, years later. "The things you were upset about, you'd open your mouth about."
Misperceptions
Fear of people with facial disfigurements is a common phobia, yet, unlike other fears -- of height, of water, of the dark -- it is seldom discussed, perhaps because so much popular culture, from The Iliad to Saw V, pivots upon this fear. Perhaps it is assumed: of course you are afraid of the man without a face. Who wouldn't be?
Or perhaps because, unlike fear of high places, water or the dark, teratophobia -- fear of disfigured people or of giving birth to a disfigured baby, literally 'fear of monsters' -- has a living object: the injured, burnt, unusual-looking people themselves. Drawing attention to the flinching reaction they often receive, the stares and mockery that are a routine part of their daily lives, can seem an additional cruelty, the sort of vileness enjoyed by schoolyard bullies.
Why are distorted faces so frightening? Freud classified certain objects as 'unheimlich,' a difficult-to-translate word akin to 'uncanny': strange, weird, unfamiliar. Waxwork dummies, dolls, mannequins can frighten us because we aren't immediately sure what we're looking at, whether it's human or not, and that causes anxiety. A surprisingly large part of the human brain is used to process faces. Identifying friend from foe at a distance was an essential survival skill on the savannah, and a damaged face is thought to somehow rattle this system.
The psychologist Irvin Rock demonstrated this in his landmark 1974 paper 'The perception of disoriented figures.' Rock showed that even photos of familiar faces -- famous people like Franklin D Roosevelt, for instance -- will look unsettling when flipped upside down. Just as, if you tip a square enough it stops being a square and starts becoming a diamond, so rotating a face makes it seem less like a face. The mind can't make immediate sense of the inverted features, and reacts with alarm. A bigger change, such as taking away the nose, transforms the face severely enough that it teeters on no longer seeming a human face at all, but something else.
That isn't a theoretical example picked out of the air. On another visit to the Craniofacial Center, I enter Seelaus's examination room to be introduced to a patient. He turns in the chair, and is missing the middle part of his face. There are four magnetic posts where his nose will go, and below it, a void revealing smooth yellow plastic. My eyes lock on his eyes, I shake his hand and say some words.
A half-hour later, standing on the elevated train platform, I still feel ... what? 'Harrowed' is the word that eventually comes to mind. Why? There was no surprise. I'm no longer a child but an adult, a newspaper reporter who has spent hours watching autopsies, operations, dissections in gross pathology labs. I was expecting this; it's what I came here for. What about his face was so unsettling?
Maybe seeing injured faces compels an observer to confront the random cruelty of life in a raw form. Maybe it's like peeling back the skin and seeing the skull underneath. Like glimpsing death. Maybe it touches some nameless atavistic horror. That's as far as I get before the train arrives and I get on.
School days
Randall H James was born in Ohio in 1956. His first surgeries were done over the next couple of years at Cincinnati Children's Hospital by Dr Jacob Longacre, a pioneer in modern plastic surgery.
The teachers assumed I must be stupid.
"He was like a second father to me because I saw him so much," says James, who didn't celebrate a Christmas at home between the ages of 3 and 13. School holidays were for operations. Summers too.
When little Randy began school, his teachers in the city of Hamilton made a common mistake, the sort of automatic connection between inner person and outer appearance that has been the default assumption since history began.
"The teachers assumed I must be stupid," says James, who was put in a class with children who had learning disabilities -- until teachers realized that he was actually very bright, only shy, and missing an ear, which made it harder for him to hear. He was allowed to sit in the front of the room, where he could hear the teacher, and his grades soared.
Doctors constructed him a large, puffy, vaguely earish appendage. It looked like a coil of dough, like a boxer's cauliflower ear. It wasn't much help.
As a student at the University of Kentucky, James applied to be a residence hall adviser, someone who assists other students in navigating dorm life. The supervisor who rejected him candidly told him that his odd-looking ear could put others off.
"'You might make the students nervous,'" James recalls him saying, then paused, the pain still obvious after 40 years. "These were my classmates."
History concealed
We are a society where people thrive or fail -- in part, in large part -- because of appearance. The arrangement of your features goes far in deciding who you are attractive to, what jobs you get. Study after study shows that people associate good looks with good qualities, and impugn those who aren't attractive. Even babies do this, favoring large eyes, full lips, smooth skin. Billions of dollars are spent on plastic surgery by people who are in no way disfigured, just for that little extra boost they feel it gives to them, gilding the lilies of their attractiveness.
How do people with unusual appearances fit into such a world? For most of recorded history, children born with disfigurements were wonders, portents or punishments. If they were allowed to live. "A couple hundred years ago, people born with craniofacial conditions, they were just putting them in a bucket of water," said Dr David Reisberg, an oral plastic surgeon at the Craniofacial Center.
But even then, astute observers saw beyond externalities. Michel de Montaigne in 1595 encountered a child conjoined to the half-torso, arms and legs of an undeveloped twin (what we would now call a parasitic twin), displayed by its father for money. Montaigne noted: "Those that we call monsters are not so to God, who sees in the immensity of His work the infinite forms that He has comprehended therein."
Adults were another matter. Those who came upon their distinctive faces later in life were seen as having been dealt their due, either through heroism in battle -- dueling scars were so fashionable in 19th-century Germany that young men would intentionally wound themselves -- or through the outward manifestation of inner sin. Plastic surgery began its first, faltering steps as a separate field of medicine after Columbus brought back syphilis from the New World in the 1490s, the injurious effects of which include destruction of the nasal cartilage. Soon silversmiths were fashioning metallic noses, and surgeons were cutting triangular flaps from patients' foreheads and twisting them to form rudimentary new noses. Sometimes that even worked.
Perhaps the most surprising thing about the history of plastic surgery is how old it is. The use of the term 'plastic' to describe a type of medical operation was popularized in German surgical texts in the 1820s, long predating its 20th-century use for the synthetic material.
British doctors in 19th-century India advanced plastic surgery while trying to repair the noses and lips local warlords cut off as a mark of disgrace. But plastic surgery truly entered the modern age after World War I.
Trench warfare created facial injuries with a grim efficiency. The trench protected your body and the helmet protected your head, saving your life but not your face. Historians estimate that 20,000 British soldiers returned home with mutilated faces after the War. Society wrestled with contradictory impulses: to seek them out and to shun them. The scarred faces of soldiers were highlighted in books and exhibitions, both to show off what was possible through modern medical technology and to act as a cautionary tale of the horrors of war.
Yet in Britain there were also schemes to segregate those with facial injuries in their own villages, to keep them out of sight.
In the 1920s, almost every café in Paris had its pensioned veterans. "Croix de Guerre ribbons in their lapels and others also had the yellow and green of the Médaille Militaire," Ernest Hemingway notes in A Movable Feast. "I watched... the quality of their artificial eyes and the degree of skill with which their faces had been reconstructed. There was always an almost iridescent shiny cast about the considerably reconstructed face, rather like that of a well packed ski run, and we respected these clients."
Sir Harold Gillies set up his famous hospital during World War I in Sidcup, a small English town, which soon found itself populated by servicemen having their faces rebuilt. Certain park benches were painted blue, as a code to the townspeople to brace themselves for the patients who might be sitting upon them, and thus not be startled as they approached.
This "startle" reaction is a cause of much distress, both for people with disfigurements and for those they encounter, who must compress the lengthy adjustment period that recovering patients themselves go through into a moment, and tend not to do it well.
Until not so long ago, those reluctant to see people whose appearances stray beyond the range of the usual actually had the law on their side. Many cities in the United States had 'ugly laws' designed primarily to reduce public begging. Chicago's law read:
Any person who is diseased, maimed, mutilated or in any way deformed, so as to be an unsightly or disgusting object, or an improper person to be allowed in or on the streets, highways, thoroughfares or public places in this city, shall not therein or thereon expose himself or herself to public view ...
The law was not repealed until 1974.
Survivors
"So Randy, can I take your bar off?" says Rosie Seelaus. James has a white gold C-shaped armature permanently fixed to the side of his head, anchored to his skull with gold screws. The prosthetic ear snaps onto the bar. "I'll take your bar off so I can make the substructure. At lunch we can look at images we have."
If this were fitting well we could use the same mold and just replace the silicone, but since it's not fitting well, we're going to be starting from scratch and redesigning ... Tomorrow will be mostly sculpting his ear.
It is Monday. James is in Chicago for the entire week, having his new ear created. Seelaus removes the screws and lifts the metal structure from the side of his head, the first time it has been taken off in seven years, since he decided to replace the crude ear surgeons had created for him with a prosthetic.
"If this were fitting well we could use the same mold and just replace the silicone," she says of James, who has lost 24 pounds, which threw off the fit of his ear. "But since it's not fitting well, we're going to be starting from scratch and redesigning ... Tomorrow will be mostly sculpting his ear."
This involves a range of high-tech gear. A CT scan is taken of his left ear. A computer then creates a mirror image of that scan, which a milling machine uses to carve a right ear out of a block of dense blue wax. Seelaus takes this prototype and makes a second, skin-toned ear from softer dental wax, which she puts on James to adjust its form and fit. A colorimeter and a spectrophotometer are used to gauge exact color values.
"Color is essential to having a successful prosthesis outcome," says Seelaus, who spends hours matching shades, then fitting James's ear to his head -- even the most perfect, natural looking ear will fail if there's a gap between it and the wearer's head. When she's done, the ear is then pressed into dental stone to create a mold that she fills with silicone to make the final ear. She mixes liquid pigments into splashes of clear silicone, colors she dabs into clear plastic, which she holds against James's head, trying to match his skin tone. Seelaus doesn't pour the colored silicone into the mold; she paints it in, layer by layer. To imitate tiny veins, she uses strands of red and purple yarn.
Matching the appearance of each individual is crucial. She has, for instance, created ears that were partially burned, to match scarring on a burned face.
"This is a full-life journey for these patients," says Seelaus, who has done this work for 16 years. "I'm still learning from patients about what their life experience is and how it changes. Being born with a facial difference becomes a life journey that has a lot to do with acceptance. I've learned with patients who are burn survivors -- not victims, survivors -- initially their relationship with the prosthesis changes, too, throughout their lives ... What I try to tell them is, they've been through a lot already, it will also take adapting to the new way they look."
How people fare on this journey generally depends on what they start with. "It's about your self-perception before the incident," Seelaus says.
People who sit in this chair are survivors. They don't come to me in this chair without having survived something, and often it's a lot.
And self-perception really matters. A Dutch study in 2012 looked at how well people with facial disfigurements functioned socially, finding that their satisfaction with their appearance was more important than the objective severity of the disfigurement.
Not that living with a face that is far beyond the mainstream is ever easy, or purely a matter of confidence. It isn't. It's a struggle, Seelaus says, requiring courage and endurance.
"People who sit in this chair are survivors," she says. "They don't come to me in this chair without having survived something, and often it's a lot. It takes resilience to get through the treatment. And what they've been through living day-to-day in society takes a resilience we may never understand if we don't go through that. Burn survivors have a resilience that is phenomenal. The reality is, it can happen to anyone. And so maybe that will bring about compassion."
"A Face for Me"
Is greater public compassion on the way? Stares and thoughtless comments are a daily part of life for people with disfigurements. But there are many groups that have long suffered abuse at the hands of society but are now better accepted. Is there any hint that those with damaged faces are traveling the same path that, say, people with Down's syndrome are taking towards being more fully welcomed and integrated by society?
"People would really have to change a lot to make facial deformity the new normal," says Kim Teems, Communications and Program Director at FACES, the National Craniofacial Association. "It's a very hard thing to go through, not only being looked at strangely, but all the pain of surgeries."
That was why I couldn't play with the other children, go to school, go to church, run into the store to buy candy or ice cream. All these things had been forbidden to me.
Based in Tennessee, FACES started in 1969 as the Debbie Fox Foundation. Fox has an important if forgotten role in the glacial social progress of people with disfigurements. She was born in Chattanooga, Tennessee, on 31 December 1955, with a massive cleft from her upper lip to her forehead, her eyes pushed to the sides of her head: basically a hole where her face should be.
"Her parents resigned themselves to raising their youngest daughter as a hidden child -- secluded from outside eyes," a newspaper account noted.
Fox said she had never seen her own face until she was eight years old and found a hand mirror. She screamed in terror. "So that was what I looked like," she wrote in her 1978 autobiography, A Face for Me. "That was why I couldn't play with the other children, go to school, go to church, run into the store to buy candy or ice cream. All these things had been forbidden to me."
By third grade she attended school via telephone hookup, standing to recite the pledge of allegiance with classmates she'd never met. When, at age 13, she was driven to Atlanta for reconstructive surgery, it was the first time she had left her hometown, the first time she had eaten in a restaurant -- in the back, at off hours, but in a real restaurant.
It was also when "the girl without a face" caught wider public attention. The magazine Good Housekeeping ran a story about Fox in 1970 that showed her only from the back, a squeamishness that the media still struggle to overcome. Seeing people different from oneself can be a helpful step towards accepting them, but for people with disfigurements, public visibility has been slow in coming. Some progress has been made, though. Esquire magazine put a soldier missing both legs and an arm on its cover in 2007, and in 2010 featured inside a straight-on photograph of the film critic Roger Ebert with most of his lower jaw removed because of salivary gland cancer.
Educating the public
Randy James is not optimistic. As someone who not only wears an artificial ear and has sprays of scars under his jaw, but also is a doctor working with veterans whose faces have been damaged by war or illness, he doesn't see much improvement in how society views people with facial disfigurements.
"In some ways it's worse," James says. "With the rise of social media, you can be an anonymous bully. If you're not attractive, in many ways you're not going to be successful in society.
With our current conflicts, we're seeing injures far more catastrophic than we used to see.
"I was working at St Mary's Medical Center in Huntington, West Virginia. I had just gotten my [prosthetic] ear right before I started there. Had I not had my new ear, which really changes my appearance, would they have made me one of their poster boys promoting their hospital? I can pretty much guarantee they wouldn't have done that if I had my old ear."
Some disagree. Just as World War I injected people with disfigurements into the general population, so have a dozen years of warfare in Afghanistan and Iraq, and this new generation of veterans is having an impact on how those with a wide variety of severe injuries are viewed.
"With our current conflicts, we're seeing injures far more catastrophic than we used to see," says Captain Craig J Salt, a plastic surgeon at the U.S. Naval Medical Center in San Diego, California.
"Massive tissue destruction, horrific burns ... The combination of the level of destruction with amazing lifesaving capability of the front lines gives you a patient population who would not have survived in the Vietnam era ... We have people entering rehabilitation horrifically disfigured in significant numbers."
Salt, who led the Navy's effort to begin treating facially wounded veterans with the same team approach used for treating cleft palates, says, "My impression is society is more accepting and more aware of the magnitude of injuries our soldiers and sailors, marines and airmen are coming back with. They're more accustomed to seeing disfigured patients because of media awareness, with social media ... people might be a little less shocked to see a disfigured patient."
Soldiers in Britain echo Salt's sentiment. "Since I was injured five years ago, the profile of disability and injured service personnel has grown massively," says Joe Townsend, a Royal Marine who lost his legs to a bomb in Afghanistan.
"Unfortunately, a lot of that's down to the growing number of guys and girls coming back from Afghanistan with life-changing injuries, but the progress made by charities and the awareness on the television has really helped to educate the general public ... Before, I'd walk down the street and I'd notice people looking at me, but it's pretty much an everyday occurrence to see someone injured now."
Townsend says this in Wounded: The Legacy of War, a coffee table book of beautiful, fashion-style photographs of wounded British soldiers, taken by the rock singer Bryan Adams.
Facial equality
It is tempting to point books such as Wounded, and other popular culture treatments of disfigurement, and aggregate them into a sign of progress. Wonder by R J Palacio is a young-adult book that tells the story of August, a ten-year-old with severe facial differences trying to adjust to school life for the first time. "If I found a magic lamp and I could have one wish, I would wish that I had a normal face that no one ever noticed at all," August confides, on the first page.
And these works do have an impact. Wonder was on the New York Times bestseller list for 97 weeks. Even a decade ago, a child such as Mary Cate Lynch, three, might seldom have gone out in public. She was born with Apert syndrome, an extremely rare genetic condition that affects her head, face, feet and hands. But today, Mary Cate has her own cheery website, introducing her with photos and video. Her mother, Kerry Lynch, has taken her to 80 Chicago-area schools to present a program, often tied to the class reading Wonder, that explains Apert syndrome.
I thought the best thing I could do is to educate others so they wouldn't be afraid of it. Fear comes from the unknown.
"Every parent does what they think best," says Lynch, a nurse. "I thought the best thing I could do is to educate others so they wouldn't be afraid of it. Fear comes from the unknown. I just thought if I could tell others about it, show them that, yeah, she's a little bit different, but she's more similar. If I could explain what these differences are, be very candid about it, that's what I could do to help her in her life."
Society takes a long time to accept people who look in any way different. Many Americans thought Irish immigrants, as a class, were ugly when they migrated in numbers to the USA in the 1850s, mocking them for their features, holding them up as signs of congenital inferiority. A few decades later, they marveled at how much these same Irish immigrants had somehow changed -- "even those born and brought up in Ireland often show a decided improvement in their physiognomy after having been here a few years," Samuel R Wells wrote in the 1870s, making the common error of confusing a shift in one's own perception with a change in the object being perceived. Irish faces didn't actually change; the American public's antipathy did, slowly and without their even being aware of it.
Awareness of the challenges facing people with facial differences has not yet grown enough to smooth the path of any given adult walking into a restaurant or any given child showing up on a playground. But the seeds of improvement are definitely being planted. In Britain, the group Changing Faces put posters of disfigured people on the London Underground. Its founder, James Partridge, read the noon TV news in London for a week in 2009 to show that, while delivering information may be monopolized by the beautiful, it doesn't have to be.
In South Africa, the message of facial equality is very easy for them to pick up. I think it's such a simple concept, the prejudices we need to attack.
"Are things changing?" says Partridge. "I think it's very much about where you look ... In 2008 we launched our campaign for face equality. We started public awareness, putting posters up, saying, 'Have a look at these characters, they're okay.'
"We definitely had an impact ... [though] outside of the confines of Britain, much less. Though in Taiwan there is a Facial Equality Day in May. In South Africa, the message of facial equality is very easy for them to pick up. I think it's such a simple concept, the prejudices we need to attack."
Face to face
In 1998, the Italian fashion company Benetton ran a series of ads featuring people with disabilities. The ads awakened the guilt I still felt about Cynthia Cowles. I realized we had some unfinished business. I tracked down her phone number and called her, writing about our conversation in a Chicago Sun-Times column published at the time.
Talking to Cynthia was awkward for the first five seconds. Then we were old classmates, laughing and sharing stories. She said she had seen me interviewed on TV.
"You still play with your shoelace when you're nervous," she said.
I was nervous now. I told her I was sorry for being mean to her in grade school.
"If you were mean to me, there were so many other people who were so much worse," she said. "I recall you as being one of the kinder people. You were the one in eighth grade who came to visit me in the hospital -- you told me your mother made you come, but you stayed a half-hour, very uncomfortably -- and brought a box of stationery."
I have no memory of that, though spilling the beans about my mother's command was exactly the sort of dopey, over-honest thing I would say, then and now. She recalled feeling sorry for me.
"You got teased for being fat, and got teased because you couldn't skip," she said, recounting how the gym teacher tried to drill me into skipping.
After we caught up -- we both had got married -- I asked her something I had always wondered about. What exactly was the cause of her disfigurement?
"I was basically born without bone in my nose, and the front of my forehead was not closed," she said. "I'm hydrocephalic, which means my head is bigger than it should be, which put pressure on my brain."
She had more than 60 operations. "Now I'm done," she said.
We laughed a lot, particularly when she told a story about dealing with her tormentors. "My mother always thought if you ignored it, it would go away," she said. But that only went so far, and one day she turned around and socked a kid who was teasing her, then was terrified because she realized the assistant principal had been standing right there and saw her.
"But he just gave me the thumbs-up sign, and said, 'If you didn't, I was going to.'"
A matter of perception
On Friday, Seelaus heats James's new ear in an Imperial V Laboratory Oven, then, wearing light green oven mitts, removes the cylindrical mold. After it has cooled, she pries the sections of the mold apart. "Look at that," she says, brushing away excess silicone, then almost sings, "I think that looks pretty goooood."
She lifts out a startlingly human-looking ear. With a few trims and a touch of color here and there, she attaches it to James's head. From two feet away you can't tell it isn't a natural human ear. James is delighted. "It looks a lot better, huh hon?" he says to his wife, who has come to see the final result. She later pronounces the new ear "sexy".
Seelaus gives him some practical care tips. Keep away from solvents, small children and pets -- animals like to chew silicone. The ear will sink. "If you go swimming, if you're in the ocean, wear your old ear," she says. "Don't put it on top of a radiator or toaster oven."
I estimate the ear costs $10,000 -- its fabrication took up most of Seelaus's working week -- and she does not contradict me. I also observe that Seelaus must be one of the few artists who hopes that her work goes entirely unnoticed by the public, and she doesn't contradict me about that, either.
Happy though he is with his improved appendage, when I ask James if I could take a picture of him wearing his new ear, he refuses. He says he is worried, not about the photo's appearance on Mosaic, but that it might later be lifted and included in some online "hall of monsters". I ask several times in several ways, reassuring him that in my view this is highly unlikely. His answer is always the same: No. A reminder that looks are always relative, always only part of the story, and that our reaction to them fills in the rest.
There is no such reluctance with Seelaus's next patient, Victor Chukwueke, a Nigerian-born medical student with neurofibromatosis, a disease of rapidly growing tumours that crushed his jaw, distorted his face, and left his right eye an empty hollow. He is here to get a new false eye and surrounding socket, to help put his future patients at ease. Even without a prosthetic, however, with a scarred void where his right eye once was, he smiles and poses as I click away.
Seeing people with disfigurements is important, because once a person, or a society, becomes familiar with them, apprehension fades. Just a couple of weeks before, I had needed to steel myself, sitting in my car in the parking lot of the Loyola University Medical Center, on my way to interview burn survivors, actually saying out loud, "If they can live it, I can see it," to gather my courage.
But by the time I meet Chukwueke, that trepidation is gone. I had asked Seelaus to send me a photo of him, so I could prepare myself ahead of time, but she didn't, and I go in cold. Hurrying into the Craniofacial Center, I spot a man who is obviously him, plop into the chair next to him and introduce myself, and we immediately begin to talk. His speech is sometimes hard for me to understand, because of his damaged jaw, so I have to lean in very close, our noses inches apart, as we talk to each other. It seems the most normal thing in the world.
Chukwueke puts his situation neatly into perspective.
"We all have an issue," he says. "We all go through things in life, go through difficulties. You don't have to let your challenges bring you down or let you be sad and depressed. It's a matter of perception. How you see it."
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"Take your ear off for me, please," Rosie Seelaus says to Randy James, who is sitting on a black exam chair in a special room designed for viewing colors in the Craniofacial Center on the Near West Side of Chicago.
He reaches up and detaches his right ear, which she created for him out of silicone seven years before. The ear is shabby, stained from skin oil and mottled by daily use. Viewed under various lights in the neutral, gray-walled room -- daylight, incandescent, fluorescent -- it remains a pasty beige.
James is a doctor with the Department of Veterans Affairs in Las Vegas -- the fierce desert sunlight is also tough on his prosthetic ear. Seelaus is an anaplastologist, a clinician who sculpts artificial body parts for people who have lost them through injury or disease or, as with James, who never had them to begin with.
He was born 58 years ago with Goldenhar syndrome, a genetic condition that distorts the fetal face, sometimes severely. Some children with Goldenhar, like James, are born missing an ear or part of an ear (he had only the right lobe). Some have bulging eyes, or no eyes at all. James's jaw was undersized and skewed. He underwent 35 surgeries, including one to construct his right cheekbone using bone shaved from his ribs. He pulls up his shirt to show off slashing scars across his ribcage.
I used to tell bullies I was mauled by a tiger at the zoo.
The first time I walked through the corridors of the Craniofacial Center, on the University of Illinois at Chicago's medical campus, I had to sit down. Not that I was going to faint, but the immediate possibility occurred to me. So I filled a paper cup with water and carefully lowered myself into a chair.
And that was before meeting any patients. Seeing the mute plaster molds of cleft faces, the blindly staring glass eyes and the little pyramids of false noses was enough. A baby's hand, made of silicone, grasped at the air.
That was 15 years ago. I'm not sure whether I was more or less scared of people with disfigurements than is average. As a child I had been terrified. Even of the small square picture on page 289 in the American Heritage Dictionary illustrating "contortionist," an early-20th-century photograph of a circus acrobat, her chin propped against the back of a chair, her body twisted impossibly above it, a foot planted on either side of her disembodied head. I would turn the pages of the Cs very slowly, steeling myself.
Most frightening of all, Cynthia Cowles, in Mrs Farmer's first grade class at Fairwood School, her eyes set too far apart, her nose flattened. We boys teased her relentlessly, so much that her mother phoned my mother, asking her to make me stop.
"I felt helpless," my mother told me, years later. "The things you were upset about, you'd open your mouth about."
Misperceptions
Fear of people with facial disfigurements is a common phobia, yet, unlike other fears -- of height, of water, of the dark -- it is seldom discussed, perhaps because so much popular culture, from The Iliad to Saw V, pivots upon this fear. Perhaps it is assumed: of course you are afraid of the man without a face. Who wouldn't be?
Or perhaps because, unlike fear of high places, water or the dark, teratophobia -- fear of disfigured people or of giving birth to a disfigured baby, literally 'fear of monsters' -- has a living object: the injured, burnt, unusual-looking people themselves. Drawing attention to the flinching reaction they often receive, the stares and mockery that are a routine part of their daily lives, can seem an additional cruelty, the sort of vileness enjoyed by schoolyard bullies.
Why are distorted faces so frightening? Freud classified certain objects as 'unheimlich,' a difficult-to-translate word akin to 'uncanny': strange, weird, unfamiliar. Waxwork dummies, dolls, mannequins can frighten us because we aren't immediately sure what we're looking at, whether it's human or not, and that causes anxiety. A surprisingly large part of the human brain is used to process faces. Identifying friend from foe at a distance was an essential survival skill on the savannah, and a damaged face is thought to somehow rattle this system.
The psychologist Irvin Rock demonstrated this in his landmark 1974 paper 'The perception of disoriented figures.' Rock showed that even photos of familiar faces -- famous people like Franklin D Roosevelt, for instance -- will look unsettling when flipped upside down. Just as, if you tip a square enough it stops being a square and starts becoming a diamond, so rotating a face makes it seem less like a face. The mind can't make immediate sense of the inverted features, and reacts with alarm. A bigger change, such as taking away the nose, transforms the face severely enough that it teeters on no longer seeming a human face at all, but something else.
That isn't a theoretical example picked out of the air. On another visit to the Craniofacial Center, I enter Seelaus's examination room to be introduced to a patient. He turns in the chair, and is missing the middle part of his face. There are four magnetic posts where his nose will go, and below it, a void revealing smooth yellow plastic. My eyes lock on his eyes, I shake his hand and say some words.
A half-hour later, standing on the elevated train platform, I still feel ... what? 'Harrowed' is the word that eventually comes to mind. Why? There was no surprise. I'm no longer a child but an adult, a newspaper reporter who has spent hours watching autopsies, operations, dissections in gross pathology labs. I was expecting this; it's what I came here for. What about his face was so unsettling?
Maybe seeing injured faces compels an observer to confront the random cruelty of life in a raw form. Maybe it's like peeling back the skin and seeing the skull underneath. Like glimpsing death. Maybe it touches some nameless atavistic horror. That's as far as I get before the train arrives and I get on.
School days
Randall H James was born in Ohio in 1956. His first surgeries were done over the next couple of years at Cincinnati Children's Hospital by Dr Jacob Longacre, a pioneer in modern plastic surgery.
The teachers assumed I must be stupid.
"He was like a second father to me because I saw him so much," says James, who didn't celebrate a Christmas at home between the ages of 3 and 13. School holidays were for operations. Summers too.
When little Randy began school, his teachers in the city of Hamilton made a common mistake, the sort of automatic connection between inner person and outer appearance that has been the default assumption since history began.
"The teachers assumed I must be stupid," says James, who was put in a class with children who had learning disabilities -- until teachers realized that he was actually very bright, only shy, and missing an ear, which made it harder for him to hear. He was allowed to sit in the front of the room, where he could hear the teacher, and his grades soared.
Doctors constructed him a large, puffy, vaguely earish appendage. It looked like a coil of dough, like a boxer's cauliflower ear. It wasn't much help.
As a student at the University of Kentucky, James applied to be a residence hall adviser, someone who assists other students in navigating dorm life. The supervisor who rejected him candidly told him that his odd-looking ear could put others off.
"'You might make the students nervous,'" James recalls him saying, then paused, the pain still obvious after 40 years. "These were my classmates."
History concealed
We are a society where people thrive or fail -- in part, in large part -- because of appearance. The arrangement of your features goes far in deciding who you are attractive to, what jobs you get. Study after study shows that people associate good looks with good qualities, and impugn those who aren't attractive. Even babies do this, favoring large eyes, full lips, smooth skin. Billions of dollars are spent on plastic surgery by people who are in no way disfigured, just for that little extra boost they feel it gives to them, gilding the lilies of their attractiveness.
How do people with unusual appearances fit into such a world? For most of recorded history, children born with disfigurements were wonders, portents or punishments. If they were allowed to live. "A couple hundred years ago, people born with craniofacial conditions, they were just putting them in a bucket of water," said Dr David Reisberg, an oral plastic surgeon at the Craniofacial Center.
But even then, astute observers saw beyond externalities. Michel de Montaigne in 1595 encountered a child conjoined to the half-torso, arms and legs of an undeveloped twin (what we would now call a parasitic twin), displayed by its father for money. Montaigne noted: "Those that we call monsters are not so to God, who sees in the immensity of His work the infinite forms that He has comprehended therein."
Adults were another matter. Those who came upon their distinctive faces later in life were seen as having been dealt their due, either through heroism in battle -- dueling scars were so fashionable in 19th-century Germany that young men would intentionally wound themselves -- or through the outward manifestation of inner sin. Plastic surgery began its first, faltering steps as a separate field of medicine after Columbus brought back syphilis from the New World in the 1490s, the injurious effects of which include destruction of the nasal cartilage. Soon silversmiths were fashioning metallic noses, and surgeons were cutting triangular flaps from patients' foreheads and twisting them to form rudimentary new noses. Sometimes that even worked.
Perhaps the most surprising thing about the history of plastic surgery is how old it is. The use of the term 'plastic' to describe a type of medical operation was popularized in German surgical texts in the 1820s, long predating its 20th-century use for the synthetic material.
British doctors in 19th-century India advanced plastic surgery while trying to repair the noses and lips local warlords cut off as a mark of disgrace. But plastic surgery truly entered the modern age after World War I.
Trench warfare created facial injuries with a grim efficiency. The trench protected your body and the helmet protected your head, saving your life but not your face. Historians estimate that 20,000 British soldiers returned home with mutilated faces after the War. Society wrestled with contradictory impulses: to seek them out and to shun them. The scarred faces of soldiers were highlighted in books and exhibitions, both to show off what was possible through modern medical technology and to act as a cautionary tale of the horrors of war.
Yet in Britain there were also schemes to segregate those with facial injuries in their own villages, to keep them out of sight.
In the 1920s, almost every café in Paris had its pensioned veterans. "Croix de Guerre ribbons in their lapels and others also had the yellow and green of the Médaille Militaire," Ernest Hemingway notes in A Movable Feast. "I watched... the quality of their artificial eyes and the degree of skill with which their faces had been reconstructed. There was always an almost iridescent shiny cast about the considerably reconstructed face, rather like that of a well packed ski run, and we respected these clients."
Sir Harold Gillies set up his famous hospital during World War I in Sidcup, a small English town, which soon found itself populated by servicemen having their faces rebuilt. Certain park benches were painted blue, as a code to the townspeople to brace themselves for the patients who might be sitting upon them, and thus not be startled as they approached.
This "startle" reaction is a cause of much distress, both for people with disfigurements and for those they encounter, who must compress the lengthy adjustment period that recovering patients themselves go through into a moment, and tend not to do it well.
Until not so long ago, those reluctant to see people whose appearances stray beyond the range of the usual actually had the law on their side. Many cities in the United States had 'ugly laws' designed primarily to reduce public begging. Chicago's law read:
Any person who is diseased, maimed, mutilated or in any way deformed, so as to be an unsightly or disgusting object, or an improper person to be allowed in or on the streets, highways, thoroughfares or public places in this city, shall not therein or thereon expose himself or herself to public view ...
The law was not repealed until 1974.
Survivors
"So Randy, can I take your bar off?" says Rosie Seelaus. James has a white gold C-shaped armature permanently fixed to the side of his head, anchored to his skull with gold screws. The prosthetic ear snaps onto the bar. "I'll take your bar off so I can make the substructure. At lunch we can look at images we have."
If this were fitting well we could use the same mold and just replace the silicone, but since it's not fitting well, we're going to be starting from scratch and redesigning ... Tomorrow will be mostly sculpting his ear.
It is Monday. James is in Chicago for the entire week, having his new ear created. Seelaus removes the screws and lifts the metal structure from the side of his head, the first time it has been taken off in seven years, since he decided to replace the crude ear surgeons had created for him with a prosthetic.
"If this were fitting well we could use the same mold and just replace the silicone," she says of James, who has lost 24 pounds, which threw off the fit of his ear. "But since it's not fitting well, we're going to be starting from scratch and redesigning ... Tomorrow will be mostly sculpting his ear."
This involves a range of high-tech gear. A CT scan is taken of his left ear. A computer then creates a mirror image of that scan, which a milling machine uses to carve a right ear out of a block of dense blue wax. Seelaus takes this prototype and makes a second, skin-toned ear from softer dental wax, which she puts on James to adjust its form and fit. A colorimeter and a spectrophotometer are used to gauge exact color values.
"Color is essential to having a successful prosthesis outcome," says Seelaus, who spends hours matching shades, then fitting James's ear to his head -- even the most perfect, natural looking ear will fail if there's a gap between it and the wearer's head. When she's done, the ear is then pressed into dental stone to create a mold that she fills with silicone to make the final ear. She mixes liquid pigments into splashes of clear silicone, colors she dabs into clear plastic, which she holds against James's head, trying to match his skin tone. Seelaus doesn't pour the colored silicone into the mold; she paints it in, layer by layer. To imitate tiny veins, she uses strands of red and purple yarn.
Matching the appearance of each individual is crucial. She has, for instance, created ears that were partially burned, to match scarring on a burned face.
"This is a full-life journey for these patients," says Seelaus, who has done this work for 16 years. "I'm still learning from patients about what their life experience is and how it changes. Being born with a facial difference becomes a life journey that has a lot to do with acceptance. I've learned with patients who are burn survivors -- not victims, survivors -- initially their relationship with the prosthesis changes, too, throughout their lives ... What I try to tell them is, they've been through a lot already, it will also take adapting to the new way they look."
How people fare on this journey generally depends on what they start with. "It's about your self-perception before the incident," Seelaus says.
People who sit in this chair are survivors. They don't come to me in this chair without having survived something, and often it's a lot.
And self-perception really matters. A Dutch study in 2012 looked at how well people with facial disfigurements functioned socially, finding that their satisfaction with their appearance was more important than the objective severity of the disfigurement.
Not that living with a face that is far beyond the mainstream is ever easy, or purely a matter of confidence. It isn't. It's a struggle, Seelaus says, requiring courage and endurance.
"People who sit in this chair are survivors," she says. "They don't come to me in this chair without having survived something, and often it's a lot. It takes resilience to get through the treatment. And what they've been through living day-to-day in society takes a resilience we may never understand if we don't go through that. Burn survivors have a resilience that is phenomenal. The reality is, it can happen to anyone. And so maybe that will bring about compassion."
"A Face for Me"
Is greater public compassion on the way? Stares and thoughtless comments are a daily part of life for people with disfigurements. But there are many groups that have long suffered abuse at the hands of society but are now better accepted. Is there any hint that those with damaged faces are traveling the same path that, say, people with Down's syndrome are taking towards being more fully welcomed and integrated by society?
"People would really have to change a lot to make facial deformity the new normal," says Kim Teems, Communications and Program Director at FACES, the National Craniofacial Association. "It's a very hard thing to go through, not only being looked at strangely, but all the pain of surgeries."
That was why I couldn't play with the other children, go to school, go to church, run into the store to buy candy or ice cream. All these things had been forbidden to me.
Based in Tennessee, FACES started in 1969 as the Debbie Fox Foundation. Fox has an important if forgotten role in the glacial social progress of people with disfigurements. She was born in Chattanooga, Tennessee, on 31 December 1955, with a massive cleft from her upper lip to her forehead, her eyes pushed to the sides of her head: basically a hole where her face should be.
"Her parents resigned themselves to raising their youngest daughter as a hidden child -- secluded from outside eyes," a newspaper account noted.
Fox said she had never seen her own face until she was eight years old and found a hand mirror. She screamed in terror. "So that was what I looked like," she wrote in her 1978 autobiography, A Face for Me. "That was why I couldn't play with the other children, go to school, go to church, run into the store to buy candy or ice cream. All these things had been forbidden to me."
By third grade she attended school via telephone hookup, standing to recite the pledge of allegiance with classmates she'd never met. When, at age 13, she was driven to Atlanta for reconstructive surgery, it was the first time she had left her hometown, the first time she had eaten in a restaurant -- in the back, at off hours, but in a real restaurant.
It was also when "the girl without a face" caught wider public attention. The magazine Good Housekeeping ran a story about Fox in 1970 that showed her only from the back, a squeamishness that the media still struggle to overcome. Seeing people different from oneself can be a helpful step towards accepting them, but for people with disfigurements, public visibility has been slow in coming. Some progress has been made, though. Esquire magazine put a soldier missing both legs and an arm on its cover in 2007, and in 2010 featured inside a straight-on photograph of the film critic Roger Ebert with most of his lower jaw removed because of salivary gland cancer.
Educating the public
Randy James is not optimistic. As someone who not only wears an artificial ear and has sprays of scars under his jaw, but also is a doctor working with veterans whose faces have been damaged by war or illness, he doesn't see much improvement in how society views people with facial disfigurements.
"In some ways it's worse," James says. "With the rise of social media, you can be an anonymous bully. If you're not attractive, in many ways you're not going to be successful in society.
With our current conflicts, we're seeing injures far more catastrophic than we used to see.
"I was working at St Mary's Medical Center in Huntington, West Virginia. I had just gotten my [prosthetic] ear right before I started there. Had I not had my new ear, which really changes my appearance, would they have made me one of their poster boys promoting their hospital? I can pretty much guarantee they wouldn't have done that if I had my old ear."
Some disagree. Just as World War I injected people with disfigurements into the general population, so have a dozen years of warfare in Afghanistan and Iraq, and this new generation of veterans is having an impact on how those with a wide variety of severe injuries are viewed.
"With our current conflicts, we're seeing injures far more catastrophic than we used to see," says Captain Craig J Salt, a plastic surgeon at the U.S. Naval Medical Center in San Diego, California.
"Massive tissue destruction, horrific burns ... The combination of the level of destruction with amazing lifesaving capability of the front lines gives you a patient population who would not have survived in the Vietnam era ... We have people entering rehabilitation horrifically disfigured in significant numbers."
Salt, who led the Navy's effort to begin treating facially wounded veterans with the same team approach used for treating cleft palates, says, "My impression is society is more accepting and more aware of the magnitude of injuries our soldiers and sailors, marines and airmen are coming back with. They're more accustomed to seeing disfigured patients because of media awareness, with social media ... people might be a little less shocked to see a disfigured patient."
Soldiers in Britain echo Salt's sentiment. "Since I was injured five years ago, the profile of disability and injured service personnel has grown massively," says Joe Townsend, a Royal Marine who lost his legs to a bomb in Afghanistan.
"Unfortunately, a lot of that's down to the growing number of guys and girls coming back from Afghanistan with life-changing injuries, but the progress made by charities and the awareness on the television has really helped to educate the general public ... Before, I'd walk down the street and I'd notice people looking at me, but it's pretty much an everyday occurrence to see someone injured now."
Townsend says this in Wounded: The Legacy of War, a coffee table book of beautiful, fashion-style photographs of wounded British soldiers, taken by the rock singer Bryan Adams.
Facial equality
It is tempting to point books such as Wounded, and other popular culture treatments of disfigurement, and aggregate them into a sign of progress. Wonder by R J Palacio is a young-adult book that tells the story of August, a ten-year-old with severe facial differences trying to adjust to school life for the first time. "If I found a magic lamp and I could have one wish, I would wish that I had a normal face that no one ever noticed at all," August confides, on the first page.
And these works do have an impact. Wonder was on the New York Times bestseller list for 97 weeks. Even a decade ago, a child such as Mary Cate Lynch, three, might seldom have gone out in public. She was born with Apert syndrome, an extremely rare genetic condition that affects her head, face, feet and hands. But today, Mary Cate has her own cheery website, introducing her with photos and video. Her mother, Kerry Lynch, has taken her to 80 Chicago-area schools to present a program, often tied to the class reading Wonder, that explains Apert syndrome.
I thought the best thing I could do is to educate others so they wouldn't be afraid of it. Fear comes from the unknown.
"Every parent does what they think best," says Lynch, a nurse. "I thought the best thing I could do is to educate others so they wouldn't be afraid of it. Fear comes from the unknown. I just thought if I could tell others about it, show them that, yeah, she's a little bit different, but she's more similar. If I could explain what these differences are, be very candid about it, that's what I could do to help her in her life."
Society takes a long time to accept people who look in any way different. Many Americans thought Irish immigrants, as a class, were ugly when they migrated in numbers to the USA in the 1850s, mocking them for their features, holding them up as signs of congenital inferiority. A few decades later, they marveled at how much these same Irish immigrants had somehow changed -- "even those born and brought up in Ireland often show a decided improvement in their physiognomy after having been here a few years," Samuel R Wells wrote in the 1870s, making the common error of confusing a shift in one's own perception with a change in the object being perceived. Irish faces didn't actually change; the American public's antipathy did, slowly and without their even being aware of it.
Awareness of the challenges facing people with facial differences has not yet grown enough to smooth the path of any given adult walking into a restaurant or any given child showing up on a playground. But the seeds of improvement are definitely being planted. In Britain, the group Changing Faces put posters of disfigured people on the London Underground. Its founder, James Partridge, read the noon TV news in London for a week in 2009 to show that, while delivering information may be monopolized by the beautiful, it doesn't have to be.
In South Africa, the message of facial equality is very easy for them to pick up. I think it's such a simple concept, the prejudices we need to attack.
"Are things changing?" says Partridge. "I think it's very much about where you look ... In 2008 we launched our campaign for face equality. We started public awareness, putting posters up, saying, 'Have a look at these characters, they're okay.'
"We definitely had an impact ... [though] outside of the confines of Britain, much less. Though in Taiwan there is a Facial Equality Day in May. In South Africa, the message of facial equality is very easy for them to pick up. I think it's such a simple concept, the prejudices we need to attack."
Face to face
In 1998, the Italian fashion company Benetton ran a series of ads featuring people with disabilities. The ads awakened the guilt I still felt about Cynthia Cowles. I realized we had some unfinished business. I tracked down her phone number and called her, writing about our conversation in a Chicago Sun-Times column published at the time.
Talking to Cynthia was awkward for the first five seconds. Then we were old classmates, laughing and sharing stories. She said she had seen me interviewed on TV.
"You still play with your shoelace when you're nervous," she said.
I was nervous now. I told her I was sorry for being mean to her in grade school.
"If you were mean to me, there were so many other people who were so much worse," she said. "I recall you as being one of the kinder people. You were the one in eighth grade who came to visit me in the hospital -- you told me your mother made you come, but you stayed a half-hour, very uncomfortably -- and brought a box of stationery."
I have no memory of that, though spilling the beans about my mother's command was exactly the sort of dopey, over-honest thing I would say, then and now. She recalled feeling sorry for me.
"You got teased for being fat, and got teased because you couldn't skip," she said, recounting how the gym teacher tried to drill me into skipping.
After we caught up -- we both had got married -- I asked her something I had always wondered about. What exactly was the cause of her disfigurement?
"I was basically born without bone in my nose, and the front of my forehead was not closed," she said. "I'm hydrocephalic, which means my head is bigger than it should be, which put pressure on my brain."
She had more than 60 operations. "Now I'm done," she said.
We laughed a lot, particularly when she told a story about dealing with her tormentors. "My mother always thought if you ignored it, it would go away," she said. But that only went so far, and one day she turned around and socked a kid who was teasing her, then was terrified because she realized the assistant principal had been standing right there and saw her.
"But he just gave me the thumbs-up sign, and said, 'If you didn't, I was going to.'"
A matter of perception
On Friday, Seelaus heats James's new ear in an Imperial V Laboratory Oven, then, wearing light green oven mitts, removes the cylindrical mold. After it has cooled, she pries the sections of the mold apart. "Look at that," she says, brushing away excess silicone, then almost sings, "I think that looks pretty goooood."
She lifts out a startlingly human-looking ear. With a few trims and a touch of color here and there, she attaches it to James's head. From two feet away you can't tell it isn't a natural human ear. James is delighted. "It looks a lot better, huh hon?" he says to his wife, who has come to see the final result. She later pronounces the new ear "sexy".
Seelaus gives him some practical care tips. Keep away from solvents, small children and pets -- animals like to chew silicone. The ear will sink. "If you go swimming, if you're in the ocean, wear your old ear," she says. "Don't put it on top of a radiator or toaster oven."
I estimate the ear costs $10,000 -- its fabrication took up most of Seelaus's working week -- and she does not contradict me. I also observe that Seelaus must be one of the few artists who hopes that her work goes entirely unnoticed by the public, and she doesn't contradict me about that, either.
Happy though he is with his improved appendage, when I ask James if I could take a picture of him wearing his new ear, he refuses. He says he is worried, not about the photo's appearance on Mosaic, but that it might later be lifted and included in some online "hall of monsters". I ask several times in several ways, reassuring him that in my view this is highly unlikely. His answer is always the same: No. A reminder that looks are always relative, always only part of the story, and that our reaction to them fills in the rest.
There is no such reluctance with Seelaus's next patient, Victor Chukwueke, a Nigerian-born medical student with neurofibromatosis, a disease of rapidly growing tumours that crushed his jaw, distorted his face, and left his right eye an empty hollow. He is here to get a new false eye and surrounding socket, to help put his future patients at ease. Even without a prosthetic, however, with a scarred void where his right eye once was, he smiles and poses as I click away.
Seeing people with disfigurements is important, because once a person, or a society, becomes familiar with them, apprehension fades. Just a couple of weeks before, I had needed to steel myself, sitting in my car in the parking lot of the Loyola University Medical Center, on my way to interview burn survivors, actually saying out loud, "If they can live it, I can see it," to gather my courage.
But by the time I meet Chukwueke, that trepidation is gone. I had asked Seelaus to send me a photo of him, so I could prepare myself ahead of time, but she didn't, and I go in cold. Hurrying into the Craniofacial Center, I spot a man who is obviously him, plop into the chair next to him and introduce myself, and we immediately begin to talk. His speech is sometimes hard for me to understand, because of his damaged jaw, so I have to lean in very close, our noses inches apart, as we talk to each other. It seems the most normal thing in the world.
Chukwueke puts his situation neatly into perspective.
"We all have an issue," he says. "We all go through things in life, go through difficulties. You don't have to let your challenges bring you down or let you be sad and depressed. It's a matter of perception. How you see it."
***********************
Wednesday, June 24, 2015
AWARENESS UPDATE: BULLYING
Below, please read an excellent column I chanced across the other day, which has to do with bullying. Bullying is something most persons with Moebius Syndrome know something about. If you look different than what is considered "normal", or if you sound different, then chances are, someone at some time made fun of you. Many of us learned long ago how to deal with it. Still--the consequences of being bullied can be very serious. Read on:
********************
Each year, more than 3.2 million students in the United States identify as victims of bullying. Tragically, that number doesn't even begin to address the individuals who experience harassment outside of educational institutions — in the workplace, on a team, or at a place of worship. That figure might seem surprising to some, but not to us. Our son Tyler, who ended his life five years ago, was a victim of cruel cyber-bullying. He put a face and a name to this epidemic.
Vicious, and at times debilitating, bullying is a routine fact of life for too many young people. This kind of harassment and humiliation leaves physical and emotional scars — sometimes for life — and can be a factor in truancy, substance abuse and suicide.
Since launching the Tyler Clementi Foundation in 2010, we've focused on boosting awareness around bullying. We need all Americans to know about the real cost of this kind of abuse. Part of this has been identifying and defining what to watch out for, since bullying takes on many forms — especially in the age of social media.
Over the last five years, we've traveled thousands of miles and met thousands of people who have been affected by bullying. We've been to the White House, athletic fields, middle schools and college campuses. These conversations have transcended political divisions and have included those who are new to the issue, as well as those who are skeptical that bullying even exists. If the sum of all of those conversations was to stay one bully's hand, give a second choice to a conflicted teen, or push one parent or teacher to intervene, then we've succeeded.Spreading awareness and pushing a conversation is valuable, and we are confident that our culture is moving in the right direction. But we've decided it's time to move to the next phase and actively push organizations to prevent this abuse before it happens.
Starting this summer, we are calling on individual students, teachers, managers and coaches — as well as colleges, universities and any institution that is responsible for molding young people — to take matters into their own hands, and put an end to bullying on Day One.
This effort, which we've named #Day1, is an effective, immediate and simple way to reduce bullying, harassment and humiliation. The program focuses on targeted intervention during orientation. Everyone should know, from the very first day they come to campus, that some forms of what has been deemed "socially acceptable" teasing or cruelty are unacceptable. This means that the cumulative damage of an anonymous mob piling onto a student repeatedly on Twitter and cruel or threatening taunts on a Facebook wall both constitute as bullying.
The more direct mean texts, and traditional forms such as ganging up on a student who may be socially awkward or poor at sports; or a boy or girl who seems different; or a student who may be a different race, religion or ethnicity — if they are made to feel isolated, less-than or physically or emotionally threatened — that's all bullying. In short, knowing what we know, knowing how high the stakes are, we can't say, "that's just harmless hazing," or "boys will be boys," any longer.
#Day1 does not cost taxpayer money, increase tuition or demand a fee. But it can change culture and produce positive outcomes in an instant. All it requires is a person in authority to clearly state that bullying or intimidation will not be tolerated and teach new stakeholders what to look out for. Once the rules are explained early in the tenure of new students, employees, or athletes, participants must verbally confirm that they understand.
Many psychological studies have highlighted something called a "bystander effect," showing that the larger the group, the less likely individuals are to act when they see someone being harmed. #Day1 works to interrupt this thinking by encouraging individuals to be "upstanders" — people who stand up for a victim and up to bullying.
The tragedy of our son Tyler's situation is that perhaps hundreds of people were aware that he was being bullied and said nothing. We hope that #Day1 will provide individuals like them with the resources they need to stand up to bullying when they see it, helping to prevent future tragedies.
Shifting our culture and changing attitudes about what is not acceptable behavior can be a painstaking and slow process. But it can also be as simple as having an initial conversation, setting an early example and empowering individuals to stand up for what is right. We are hopeful that in the new school year, teachers, coaches and campuses will adopt #Day1 as a foundational, inspirational, affirming start to their school year. We hope to see you in stadiums, classrooms and auditoriums — and we know that Tyler will be with us in spirit this year and through a lifetime of Day Ones.
Joseph and Jane Clementi founded The Tyler Clementi Foundation.
************************
********************
Each year, more than 3.2 million students in the United States identify as victims of bullying. Tragically, that number doesn't even begin to address the individuals who experience harassment outside of educational institutions — in the workplace, on a team, or at a place of worship. That figure might seem surprising to some, but not to us. Our son Tyler, who ended his life five years ago, was a victim of cruel cyber-bullying. He put a face and a name to this epidemic.
Vicious, and at times debilitating, bullying is a routine fact of life for too many young people. This kind of harassment and humiliation leaves physical and emotional scars — sometimes for life — and can be a factor in truancy, substance abuse and suicide.
Since launching the Tyler Clementi Foundation in 2010, we've focused on boosting awareness around bullying. We need all Americans to know about the real cost of this kind of abuse. Part of this has been identifying and defining what to watch out for, since bullying takes on many forms — especially in the age of social media.
Over the last five years, we've traveled thousands of miles and met thousands of people who have been affected by bullying. We've been to the White House, athletic fields, middle schools and college campuses. These conversations have transcended political divisions and have included those who are new to the issue, as well as those who are skeptical that bullying even exists. If the sum of all of those conversations was to stay one bully's hand, give a second choice to a conflicted teen, or push one parent or teacher to intervene, then we've succeeded.Spreading awareness and pushing a conversation is valuable, and we are confident that our culture is moving in the right direction. But we've decided it's time to move to the next phase and actively push organizations to prevent this abuse before it happens.
Starting this summer, we are calling on individual students, teachers, managers and coaches — as well as colleges, universities and any institution that is responsible for molding young people — to take matters into their own hands, and put an end to bullying on Day One.
This effort, which we've named #Day1, is an effective, immediate and simple way to reduce bullying, harassment and humiliation. The program focuses on targeted intervention during orientation. Everyone should know, from the very first day they come to campus, that some forms of what has been deemed "socially acceptable" teasing or cruelty are unacceptable. This means that the cumulative damage of an anonymous mob piling onto a student repeatedly on Twitter and cruel or threatening taunts on a Facebook wall both constitute as bullying.
The more direct mean texts, and traditional forms such as ganging up on a student who may be socially awkward or poor at sports; or a boy or girl who seems different; or a student who may be a different race, religion or ethnicity — if they are made to feel isolated, less-than or physically or emotionally threatened — that's all bullying. In short, knowing what we know, knowing how high the stakes are, we can't say, "that's just harmless hazing," or "boys will be boys," any longer.
#Day1 does not cost taxpayer money, increase tuition or demand a fee. But it can change culture and produce positive outcomes in an instant. All it requires is a person in authority to clearly state that bullying or intimidation will not be tolerated and teach new stakeholders what to look out for. Once the rules are explained early in the tenure of new students, employees, or athletes, participants must verbally confirm that they understand.
Many psychological studies have highlighted something called a "bystander effect," showing that the larger the group, the less likely individuals are to act when they see someone being harmed. #Day1 works to interrupt this thinking by encouraging individuals to be "upstanders" — people who stand up for a victim and up to bullying.
The tragedy of our son Tyler's situation is that perhaps hundreds of people were aware that he was being bullied and said nothing. We hope that #Day1 will provide individuals like them with the resources they need to stand up to bullying when they see it, helping to prevent future tragedies.
Shifting our culture and changing attitudes about what is not acceptable behavior can be a painstaking and slow process. But it can also be as simple as having an initial conversation, setting an early example and empowering individuals to stand up for what is right. We are hopeful that in the new school year, teachers, coaches and campuses will adopt #Day1 as a foundational, inspirational, affirming start to their school year. We hope to see you in stadiums, classrooms and auditoriums — and we know that Tyler will be with us in spirit this year and through a lifetime of Day Ones.
Joseph and Jane Clementi founded The Tyler Clementi Foundation.
************************
Tuesday, June 23, 2015
MOEBIUS SYNDROME IN THE NEWS
UK version! Read on:
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Erin and Matthew Roberts, together with friend Bethany Molloy, sold home-made jewellery and cakes at the St Eunan’s Primary fayre on Saturday as they raised cash for the Moebius Trust.
The girls, aged seven, and nine-year-old Matthew were inspired to fundraise for the trust after the Roberts’ little cousin Jacob Rowan was born with the condition that prevents him from smiling, or creating facial expressions.
Two year-old Jacob was born with Moebius Syndrome which means his sixth and seventh cranial nerves are underdeveloped. These nerves give people the ability to smile, blink and move their eyes from side to side.
Jacob’s mother Leanne Orr told the Post her toddler had defied so many obstacles and symptoms caused by Moebius Syndrome, including the club foot he was born with.
Explaining Jacob is as boisterous and as happy as any other two-year-old boy, Leanne said: “He is getting better. He never used to be able to blink but now he can. When he is five he will need ‘smile surgery’ where they take muscles from his legs and put those into his cheeks, helping him to smile.
“But he is very advanced. Some kids aren’t able to walk until they are three or four. He has reached all of his milestones early; he’s very clever.”
Doting older cousins Matthew ands Erin and pal Bethany know the Moebius Research Trust is working hard to fund vital research into the condition in a bid to find a cure and treatments.
The youngsters were industrious in recent weeks, making bracelets and key rings from colourful loom bands as well as tasty treats, Baking up a storm in the kitchen, the trio also used their stall to sell Mars Bar Crispy cakes, tablet and cupcakes.
Together they raised £201 for the trust and distributed dozens of information leaflets on Moebius Syndrome, ensuring locals are as well informed on the condition as they are.
Catherine Roberts, aunt to Jacob and mum to Erin and Matthew, said she was delighted St Eunan’s had been so supportive of the children’s venture.
She said: “My sister and I did a 10k last year for the charity and ever since then the girls have not stopped talking about fundraising. We approached the school and asked could we have a stall to raise a little bit of money and awareness of Moebius Syndrome because it’s not that well known.”
The three social entrepreneurs were delighted with people’s generosity throughout the fayre, which was held in the school hall between 11am and 2pm on Saturday.
****************
*************************
Erin and Matthew Roberts, together with friend Bethany Molloy, sold home-made jewellery and cakes at the St Eunan’s Primary fayre on Saturday as they raised cash for the Moebius Trust.
The girls, aged seven, and nine-year-old Matthew were inspired to fundraise for the trust after the Roberts’ little cousin Jacob Rowan was born with the condition that prevents him from smiling, or creating facial expressions.
Two year-old Jacob was born with Moebius Syndrome which means his sixth and seventh cranial nerves are underdeveloped. These nerves give people the ability to smile, blink and move their eyes from side to side.
Jacob’s mother Leanne Orr told the Post her toddler had defied so many obstacles and symptoms caused by Moebius Syndrome, including the club foot he was born with.
Explaining Jacob is as boisterous and as happy as any other two-year-old boy, Leanne said: “He is getting better. He never used to be able to blink but now he can. When he is five he will need ‘smile surgery’ where they take muscles from his legs and put those into his cheeks, helping him to smile.
“But he is very advanced. Some kids aren’t able to walk until they are three or four. He has reached all of his milestones early; he’s very clever.”
Doting older cousins Matthew ands Erin and pal Bethany know the Moebius Research Trust is working hard to fund vital research into the condition in a bid to find a cure and treatments.
The youngsters were industrious in recent weeks, making bracelets and key rings from colourful loom bands as well as tasty treats, Baking up a storm in the kitchen, the trio also used their stall to sell Mars Bar Crispy cakes, tablet and cupcakes.
Together they raised £201 for the trust and distributed dozens of information leaflets on Moebius Syndrome, ensuring locals are as well informed on the condition as they are.
Catherine Roberts, aunt to Jacob and mum to Erin and Matthew, said she was delighted St Eunan’s had been so supportive of the children’s venture.
She said: “My sister and I did a 10k last year for the charity and ever since then the girls have not stopped talking about fundraising. We approached the school and asked could we have a stall to raise a little bit of money and awareness of Moebius Syndrome because it’s not that well known.”
The three social entrepreneurs were delighted with people’s generosity throughout the fayre, which was held in the school hall between 11am and 2pm on Saturday.
****************
Tuesday, June 16, 2015
FOR MOEBIUS MOMS AND DADS (AND ALL PARENTS!): SOME ADVICE--PICK A SAYING
I thought all of you parents out there would find this amusing...and interesting...and probably kinda wise. This was written by Washington Post columnist John Kelly. Read on:
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I’ve reached the age when it is natural for me to look back at my legacy. What lasting impact have I made on history?
None.
That doesn’t bother me. What does bother me is I don’t think I’ve made much of an impact on my children, either. I mean, though I’ve basically held them captive for the past two decades, I’m hard-pressed to think of any handy aphorisms or sage advice I’ve pounded into them.
Oh sure, I’ve been a “good role model.” I covered the electrical outlets when they were toddlers. I told them to do their homework. But did I encapsulate useful life lessons into a memorable, easy-to-digest, easy-to-regurgitate nugget? No, I did not.
I mean, read any memoir or interview with a famous person, and that person invariably utters something along the lines of, “My father always said ...”
In 1999, presidential candidate Steve Forbes told The Washington Post’s David Broder: “My father always said, ‘Everything is sales. Never forget it.’ ”
And apparently he didn’t.
The former commissioner of baseball Bud Selig once said, “My father always told me, ‘Nothing’s ever good or bad except by comparison.’ ”
So catchy!
Not long after he became Virginia governor, George Allen said, “My father always told us, ‘Be a leader, don’t be a follower.’ ”
Athletes seem to particularly love Dad’s wise counsel. Here’s golfer Ken Venturi: “My father always said excuses are the crutches for the untalented.”
Here’s Arnold Palmer: “My father always said if you treat people the way you’d like to be treated, things will always work out.”
What was up with these fathers, always saying something? Sure, a lot of it was pretty obvious, but it stuck with their kids. What about my kids?
I thought about what my daughters might say, years from now, when asked to reflect on the lessons they had learned from me while growing up. I shuddered when all I could come up with was, “My father always said, ‘Put the dirty plates in the dishwasher so they’re facing the sprayer arm spindle.’ ”
About a year ago, I tried to address this aphorism deficit. We were on a long family car trip. I can’t remember what we were talking about — whether to stop at an outlet mall or why it is that so many BMW owners are bad drivers — when I said, “You can’t eat pretty.”
“What?” my family said.
“You can’t eat pretty,” I repeated with conviction.
“What is that?” one daughter said.
“Oh, it’s just something I say. Something I always say.”
And for the next few hours, I did. I kept saying it, trying to drill it into my daughters’ brains like an earworm.
Eventually I had to explain what I was up to: Though I had kept them clothed and fed, provided a roof and orthodontia, I had failed them as a father. I had not bestowed upon them a snappy maxim that they could reflect upon. A lot of the good sayings were already taken — treat people the way you’d like to be treated, for example; how I wished I’d come up with that one — so I had to invent my own: You can’t eat pretty.
This was my gift to them, better late than never.
“We want a different one,” they said.
They didn’t like “You can’t eat pretty.” I could see their point. The best paternal bromides should be endlessly applicable. Mine was kind of limited. Frankly, it was a bit negative, too.
I thought for a while, then said in the voice I use when I’m trying to be wise and self-evident: “People are people.”
“What do you mean?” came the response.
“Just that: People are people. You should keep that in mind. Like, let’s say someone makes you mad. You could say to yourself, ‘Well, as Dad always said, ‘People are people.’ And that would mean maybe that the person was dealing with her own issues.”
They looked skeptical. I think the best I can hope for is that they might someday say, “Once, on a weird trip to the Outer Banks, my father said, ‘People are people.’ ”
It’s too late for me, but it might not be for you. If you have little kids, pick your saying now and apply it liberally for the next 20 years.
Or as my father always used to say, “Don’t fall behind on your car’s oil-change schedule.”
*********************
************************
I’ve reached the age when it is natural for me to look back at my legacy. What lasting impact have I made on history?
None.
That doesn’t bother me. What does bother me is I don’t think I’ve made much of an impact on my children, either. I mean, though I’ve basically held them captive for the past two decades, I’m hard-pressed to think of any handy aphorisms or sage advice I’ve pounded into them.
Oh sure, I’ve been a “good role model.” I covered the electrical outlets when they were toddlers. I told them to do their homework. But did I encapsulate useful life lessons into a memorable, easy-to-digest, easy-to-regurgitate nugget? No, I did not.
I mean, read any memoir or interview with a famous person, and that person invariably utters something along the lines of, “My father always said ...”
In 1999, presidential candidate Steve Forbes told The Washington Post’s David Broder: “My father always said, ‘Everything is sales. Never forget it.’ ”
And apparently he didn’t.
The former commissioner of baseball Bud Selig once said, “My father always told me, ‘Nothing’s ever good or bad except by comparison.’ ”
So catchy!
Not long after he became Virginia governor, George Allen said, “My father always told us, ‘Be a leader, don’t be a follower.’ ”
Athletes seem to particularly love Dad’s wise counsel. Here’s golfer Ken Venturi: “My father always said excuses are the crutches for the untalented.”
Here’s Arnold Palmer: “My father always said if you treat people the way you’d like to be treated, things will always work out.”
What was up with these fathers, always saying something? Sure, a lot of it was pretty obvious, but it stuck with their kids. What about my kids?
I thought about what my daughters might say, years from now, when asked to reflect on the lessons they had learned from me while growing up. I shuddered when all I could come up with was, “My father always said, ‘Put the dirty plates in the dishwasher so they’re facing the sprayer arm spindle.’ ”
About a year ago, I tried to address this aphorism deficit. We were on a long family car trip. I can’t remember what we were talking about — whether to stop at an outlet mall or why it is that so many BMW owners are bad drivers — when I said, “You can’t eat pretty.”
“What?” my family said.
“You can’t eat pretty,” I repeated with conviction.
“What is that?” one daughter said.
“Oh, it’s just something I say. Something I always say.”
And for the next few hours, I did. I kept saying it, trying to drill it into my daughters’ brains like an earworm.
Eventually I had to explain what I was up to: Though I had kept them clothed and fed, provided a roof and orthodontia, I had failed them as a father. I had not bestowed upon them a snappy maxim that they could reflect upon. A lot of the good sayings were already taken — treat people the way you’d like to be treated, for example; how I wished I’d come up with that one — so I had to invent my own: You can’t eat pretty.
This was my gift to them, better late than never.
“We want a different one,” they said.
They didn’t like “You can’t eat pretty.” I could see their point. The best paternal bromides should be endlessly applicable. Mine was kind of limited. Frankly, it was a bit negative, too.
I thought for a while, then said in the voice I use when I’m trying to be wise and self-evident: “People are people.”
“What do you mean?” came the response.
“Just that: People are people. You should keep that in mind. Like, let’s say someone makes you mad. You could say to yourself, ‘Well, as Dad always said, ‘People are people.’ And that would mean maybe that the person was dealing with her own issues.”
They looked skeptical. I think the best I can hope for is that they might someday say, “Once, on a weird trip to the Outer Banks, my father said, ‘People are people.’ ”
It’s too late for me, but it might not be for you. If you have little kids, pick your saying now and apply it liberally for the next 20 years.
Or as my father always used to say, “Don’t fall behind on your car’s oil-change schedule.”
*********************
Monday, June 15, 2015
INSPIRATIONAL STORY OF THE DAY
Going from special ed, to valedictorian. And by the way, some with Moebius also have Asperger's. Read on:
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For Chance Mair, sometimes emotions are hard to express.
And it was certainly an emotional night in suburban Seattle at Marysville Arts and Technology High School’s graduation earlier this week, where the students filed into the auditorium in black gowns and royal-blue stoles.
Not only was Mair graduating with the 50 seniors in his class, he was the class valedictorian. And he would be giving the valedictorian address, a momentous occasion for a student who was diagnosed with Asperger’s syndrome at an early age.
Mair had never told most of his classmates he has Asperger’s. Never told them he had started his schooling in a special education classroom, or that he received social therapy treatment when he was younger.
“It’s one of those things that for the longest time I didn’t want to tell people,” he said earlier in the day. “But now that I’m graduating, I don’t want to hold it back. I want people to know me for who I really am.”
Growing up in Marysville, Wash. Mair spent his childhood learning how to overcome sensory struggles that come naturally to other children.
Having Asperger’s meant he didn’t talk much, and he had difficulties understanding the nuances in body language. He was overly sensitive to loud noises and strong flavors. His parents recount stories where he would struggle to tell his peers he wanted to play with them, standing quietly by their side.
“I can know that I need to say something and I can feel the confidence to say it when I’m playing it out,” he said. “But then when I get to that step where I actually have to do it, like the execution, that’s when I tense up and get really nervous, really scared.
“Sometimes it’s not even a shyness, sometimes it’s like a fear, a fear of socialness.”
His parents knew his success depended on finding a place where he could build his social skills — and have fun doing it, too.
One way he did that was through bowling. He became fascinated with the sport when he was about 5 years old, playing with different teams in bowling alleys around the Marysville area.
“Diversity is one of the reasons I like it. There’s no one kind of person, there’s no one way you can bowl,” he said. “There are so many possibilities, I guess.”
His parents saw bowling as an opportunity for him to work on his communication skills. They signed him up for as many leagues as possible.
“You put him in a bowling alley, it’s his environment, it’s his home,” said Mair’s father, Derek Mair. “Doesn’t matter what bowling alley. He loves it.”
At Marysville Arts and Technology, Mair was a member of the bowling team and traveled to the state tournament multiple times. His favorite ball is a 15-pound, solid blue Hy-Road.
“It’s the one I’ve been using the longest and the one I can always count on to get strikes. It’s never let me down,” he said.
Mair also excelled in mathematics. His mother, Christine, remembers he would write numbers to the thousands back in kindergarten.
“I can count better than I can talk sometimes,” he said.
Over time, Mair’s family carved a path that would challenge him, but was also comfortable. He moved from the special education class and therapy to regular elementary school classes. He took half his courses in a public middle school and the rest at Washington Virtual Academy online. Once in high school, he was so advanced in math he ended up taking courses at Everett Community College.
He and his family chose Marysville Arts and Tech because it was a small school where he could continue working on his social skills, as well as receive extra attention.
“At a smaller campus those teachers are getting to know you,” his mother said. “They’re learning about your learning style and you’re having them again year after year.”
And he thrived there, with a GPA high enough to earn the valedictorian’s medal.
In August, Mair will attend Washington State University for free through a Distinguished Regents scholarship. He chose WSU over Central Washington University, where he was also accepted. A member of the honors college, he plans to major in mathematics and join the intramural bowling league.
“I’m really happy that I’ve achieved so much and that I’ve gotten to this point in life, but I’m also really sad that all the time has gone by and now I have to say goodbye to all my friends,” he said.
That was what he prepared to say in his speech to his classmates, and some of his former teachers, whom he had kept in touch with over the years and had invited to the ceremony.
Mair made the text large enough so he wouldn’t stumble over the words, bolding certain words for emphasis.
But soon after the ceremony began, after the seniors sat down and the national anthem was sung, the power at the school gymnasium went out.
That meant no microphones and no lights.
But that didn’t faze Mair — it was just another opportunity to fulfill his potential.
When he told them about his Asperger’s, some in the audience audibly expressed surprise.
His struggles, he said, are similar to the struggles everyone faces in their lives. To him, everyone has something they need to overcome, and it’s just a matter of how to learn, persevere and move forward.
“Wherever our individual paths take us, there will be challenges,” Mair told the graduates. “There will be people and circumstances that say, ‘No we can’t.’ It’s up to us to decide whether or not we listen to them.
“We choose whether we sink or swim, stand up or lay down, fight or fall, succeed or fail.”
After he finished, the audience cheered. Carol Sherard, who taught him back when he was a special education student in elementary school, said she was exceptionally proud of him.
“I feel he is representing a whole population of kids that often don’t get represented in the best light,” she said.
************************
***********************
For Chance Mair, sometimes emotions are hard to express.
And it was certainly an emotional night in suburban Seattle at Marysville Arts and Technology High School’s graduation earlier this week, where the students filed into the auditorium in black gowns and royal-blue stoles.
Not only was Mair graduating with the 50 seniors in his class, he was the class valedictorian. And he would be giving the valedictorian address, a momentous occasion for a student who was diagnosed with Asperger’s syndrome at an early age.
Mair had never told most of his classmates he has Asperger’s. Never told them he had started his schooling in a special education classroom, or that he received social therapy treatment when he was younger.
“It’s one of those things that for the longest time I didn’t want to tell people,” he said earlier in the day. “But now that I’m graduating, I don’t want to hold it back. I want people to know me for who I really am.”
Growing up in Marysville, Wash. Mair spent his childhood learning how to overcome sensory struggles that come naturally to other children.
Having Asperger’s meant he didn’t talk much, and he had difficulties understanding the nuances in body language. He was overly sensitive to loud noises and strong flavors. His parents recount stories where he would struggle to tell his peers he wanted to play with them, standing quietly by their side.
“I can know that I need to say something and I can feel the confidence to say it when I’m playing it out,” he said. “But then when I get to that step where I actually have to do it, like the execution, that’s when I tense up and get really nervous, really scared.
“Sometimes it’s not even a shyness, sometimes it’s like a fear, a fear of socialness.”
His parents knew his success depended on finding a place where he could build his social skills — and have fun doing it, too.
One way he did that was through bowling. He became fascinated with the sport when he was about 5 years old, playing with different teams in bowling alleys around the Marysville area.
“Diversity is one of the reasons I like it. There’s no one kind of person, there’s no one way you can bowl,” he said. “There are so many possibilities, I guess.”
His parents saw bowling as an opportunity for him to work on his communication skills. They signed him up for as many leagues as possible.
“You put him in a bowling alley, it’s his environment, it’s his home,” said Mair’s father, Derek Mair. “Doesn’t matter what bowling alley. He loves it.”
At Marysville Arts and Technology, Mair was a member of the bowling team and traveled to the state tournament multiple times. His favorite ball is a 15-pound, solid blue Hy-Road.
“It’s the one I’ve been using the longest and the one I can always count on to get strikes. It’s never let me down,” he said.
Mair also excelled in mathematics. His mother, Christine, remembers he would write numbers to the thousands back in kindergarten.
“I can count better than I can talk sometimes,” he said.
Over time, Mair’s family carved a path that would challenge him, but was also comfortable. He moved from the special education class and therapy to regular elementary school classes. He took half his courses in a public middle school and the rest at Washington Virtual Academy online. Once in high school, he was so advanced in math he ended up taking courses at Everett Community College.
He and his family chose Marysville Arts and Tech because it was a small school where he could continue working on his social skills, as well as receive extra attention.
“At a smaller campus those teachers are getting to know you,” his mother said. “They’re learning about your learning style and you’re having them again year after year.”
And he thrived there, with a GPA high enough to earn the valedictorian’s medal.
In August, Mair will attend Washington State University for free through a Distinguished Regents scholarship. He chose WSU over Central Washington University, where he was also accepted. A member of the honors college, he plans to major in mathematics and join the intramural bowling league.
“I’m really happy that I’ve achieved so much and that I’ve gotten to this point in life, but I’m also really sad that all the time has gone by and now I have to say goodbye to all my friends,” he said.
That was what he prepared to say in his speech to his classmates, and some of his former teachers, whom he had kept in touch with over the years and had invited to the ceremony.
Mair made the text large enough so he wouldn’t stumble over the words, bolding certain words for emphasis.
But soon after the ceremony began, after the seniors sat down and the national anthem was sung, the power at the school gymnasium went out.
That meant no microphones and no lights.
But that didn’t faze Mair — it was just another opportunity to fulfill his potential.
When he told them about his Asperger’s, some in the audience audibly expressed surprise.
His struggles, he said, are similar to the struggles everyone faces in their lives. To him, everyone has something they need to overcome, and it’s just a matter of how to learn, persevere and move forward.
“Wherever our individual paths take us, there will be challenges,” Mair told the graduates. “There will be people and circumstances that say, ‘No we can’t.’ It’s up to us to decide whether or not we listen to them.
“We choose whether we sink or swim, stand up or lay down, fight or fall, succeed or fail.”
After he finished, the audience cheered. Carol Sherard, who taught him back when he was a special education student in elementary school, said she was exceptionally proud of him.
“I feel he is representing a whole population of kids that often don’t get represented in the best light,” she said.
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Thursday, June 11, 2015
HOW TO HELP YOU SLEEP BETTER?
Do you have insomnia? Do you have sleep issues? A number of people with Moebius Syndrome do. What to do about it? The article below suggests: don't necessarily rely on medications. From a recent edition of the NY Times:
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One
weekend afternoon a couple of years ago, while turning a page of the
book I was reading to my daughters, I fell asleep. That’s when I knew it
was time to do something about my insomnia.
Data, not pills, was my path to relief.
Insomnia is common. About 30 percent
of adults report some symptoms of it, though less than half that figure
have all symptoms. Not all insomniacs are severely debilitated zombies.
Consistent sleeplessness
that causes some daytime problems is all it takes to be considered an
insomniac. Most function quite well, and the vast majority go untreated.
I
was one of the high-functioning insomniacs. In fact, part of my problem
was that I relished the extra time awake to work. My résumé is full of
accomplishments I owe, in part, to my insomnia. But it took a toll on my
mood, as well as my ability to make it through a children’s book.
Insomnia is worth curing. Though causality is hard to assess, chronic insomnia is associated with greater risk of anxiety, depression, hypertension, diabetes, accidents and pain. Not surprisingly, and my own experience notwithstanding, it is also associated with lower productivity at work. Patients who are successfully treated experience improved mood, and they feel healthier, function better and have fewer symptoms of depression.
Which
remedy would be best for me? Lunesta, Ambien, Restoril and other drugs
are promised by a barrage of ads to deliver sleep to minds that resist
it. Before I reached for the pills, I looked at the data.
Specifically,
for evidence-based guidance, I turned to comparative effectiveness
research. That’s the study of the effects of one therapy against another
therapy. This kind of head-to-head evaluation offers ideal data to help
patients and clinicians make informed treatment decisions. As obvious
as that seems, it’s not the norm. Most clinical drug trials, for
instance, compare a drug with a placebo, because that’s all that’s
required for F.D.A. approval. In recognition of this, in recent years more federal funding has become available for comparative effectiveness research.
When
it comes to insomnia, comparative effectiveness studies reveal that
sleep medications aren’t the best bet for a cure, despite what the
commercials say. Several clinical trials have found that they’re
outperformed by cognitive behavioral therapy. C.B.T. for insomnia (or
C.B.T.-I.) goes beyond the “sleep hygiene”
most people know, though many don’t employ — like avoiding alcohol or
caffeine near bedtime and reserving one’s bed for sleep (not reading or
watching TV, for example). C.B.T. adds — through therapy visits or via self-guided treatments
— sticking to a consistent wake time (even on weekends), relaxation
techniques and learning to rid oneself of negative attitudes and
thoughts about sleep.
One randomized trial
compared C.B.T. with the active ingredient in Restoril in patients 55
years and older, evaluating differences for up to two years. It found
that C.B.T. led to larger and more durable improvements in sleep.
Long-term, C.B.T. alone even outperformed the combination of C.B.T. and
Restoril.
Another trial
focused on 25- to 64-year-olds found that C.B.T. outperformed Ambien
alone. Adding Ambien to a C.B.T. regimen did not lead to further
improvements. Yet another trial
found that patients experienced greater relief from insomnia with
C.B.T. than with the sleep drug zopiclone. Patients report that they prefer C.B.T. for insomnia over drug therapy.
A systematic review
of C.B.T. for insomnia, published in the Annals of Internal Medicine on
Monday, quantifies how much relief it can provide. Combining data from
20 clinical trials, which included over 1,000 patients with chronic
insomnia, the authors calculated sleep improvements after C.B.T.
treatment, relative to no treatment. On average, treated patients fell
asleep almost 20 minutes faster and were awake in the night almost half
an hour less. The total amount of time that they were sleeping when in
bed increased by nearly 10 percent. These results are similar to or better than improvements from many sleep drugs, and lasted longer.
My experience is consistent with these averages. The C.B.T. treatment I received, through an online program recommended by my doctor,
also included keeping careful track of how much sleep I got each night.
This proved very helpful. It demonstrated progress — the nights in
which I got only four or five hours of sleep became less common, and, on
average, my nights of sleep lengthened by 30 minutes. My sleep log also
helped me be more objective. Many nights I might have considered “bad” —
and fretted over — were ones in which I got only one hour less sleep
than my target of seven hours. Recognizing that’s not really so bad
helped me relax, and relaxing helped me get more and better sleep.
Improvements like mine and those reported in the study
bring sleep statistics for those with insomnia quite close to those
without it. This further emphasizes the point that many insomniacs
aren’t that different from normal sleepers. Many sleep fine most nights,
but also have more frequent nights of insufficient sleep than normal
sleepers would experience. A big part of the difference may be how
insomniacs perceive their sleep performance and the negative messages
they give themselves about their poor sleep and how it will affect their
daily lives.
C.B.T.
practitioners learn that if you label a night of sleep “bad” and expect
a bad day to follow a bad night of sleep, you’re more likely to get it,
as well as more likely to be anxious the next time you attempt to
sleep. In this way, unless exacerbated by physical causes — like sleep apnea or restless leg syndrome
— insomnia is a condition of the mind that then infects the body. Like a
patch on faulty software, C.B.T. reorients one’s thinking and behavior
so that sleep is first thought to be, and then soon after actually is, a
more positive experience. Drugs, on the other hand, just treat
insomniacs’ symptoms without addressing the underlying cause, which is
why the relief they provide may be less durable.
For me, and many patients, C.B.T. works.
And as studies show, it works better than drugs. That moment with my
children, a couple of years ago, was the last time I fell asleep reading
to them.
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Wednesday, June 10, 2015
FOR ALL THE MOMS (ESPECIALLY MOEBIUS MOMS): WHY YOU FEEL GUILTY TAKING TIME OFF...AND WHY YOU SHOULDN'T
From a recent edition of the Washington Post. Read the whole thing, all you moms, and see what you think:
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My wife was sitting cross-legged on the bed doing schoolwork on a laptop. To her right was a bag of licorice. It was a Saturday, after 9 p.m., and the kids were asleep. I was getting ready for bed, when she said, “I didn’t get a Mel Night this week.”
She said it while my back was turned, and my knee jerk reaction was to get irritated. Each week I kick her out of the house, and she goes out for a few hours to do whatever she wants. No kids. No husband. It is her time. We’ve been doing it for almost a year now, and slowly we have started to call it Mel Night.
There are a few problems with Mel Night. We can’t always make it work because of school, or work, or kids’ sports and other obligations. Sometimes we get so caught up in things that we completely forget about it. That’s not so shocking, though. What really blows my mind about Mel Night is that I literally have to nudge her out the door. Sometimes it feels like if I don’t make a serious effort to get her out, she will not go. Instead, she will stay home and fuss over our three children.I assumed that each week she’d be excited to get out of the house. But she isn’t. She seems reluctant to leave, like she’s heading off for something she shouldn’t be doing. But it’s far from that: She usually goes out with friends from church or works on genealogy. When she comes home, though, she always seems refreshed, like she’s ready to take on her life as a stay-at-home mom with new vigor. Her mood is better the rest of the week. Giving her that time off makes our marriage better, honestly.
The reason I was irritated that Saturday night, though, was because every time she doesn’t get out, she brings it up later in the week, as though I should have done more to get her out. I don’t get it. I feel like she should be fighting for this time alone. It should be a well-earned pleasure that she should take, guilt free, and not have me nagging her each week to get out and enjoy herself.
I turned around, let out a deep breath, and said, “Why didn’t you remind me? I want you to have a night out. You deserve time that isn’t child centered.” I pointed at her. “I shouldn’t have to kick you out of the house each week.”
She shrugged. “I just get wrapped up in stuff,” she said. “Sometimes I just feel like what I want doesn’t matter.”
And what I think she wanted to say was, “Sometimes I feel like what I want doesn’t matter as much.”
The tricky thing is when Mel does something on her own, like go to the store, she is still doing something for the kids. Her whole life revolves around doing things for the family. It’s a strange twisted circular thing that makes motherhood all-consuming. Having a night off breaks that cycle. Yet, she still feels guilty about it. Guilty enough that she often just lets Mel Night pass by.
When I think about her guilt, I think about how few things are as selfless as being a mother. And how much pressure that brings. Pictures on Facebook and Pinterest show mothers living in a spotless, happy world filled with homemade designer birthday cakes, and organic food. Mothers feel like they shouldn’t think about personal pleasures outside the family, because if they do, it will be viewed as selfish.
As a father, I can admit to having a hobby outside of children and when I do, I don’t seem like a distracted parent. But society is not as willing to cut mothers that same slack. It’s as if it’s inappropriate for a mother to enjoy pleasures that don’t involve her children, and I think it’s this social pressure that keeps Mel from easily taking one evening off a week. And when I think about that, motherhood becomes the most demanding job in the history of ever. It’s riddled with social guilt that makes a mother align her needs with those of her children, and only her children, and anything else is suspect.
Making sure Mel has a night off — from all of us — has really helped her to feel that her work is valuable. It shows her that the family notices what she’s doing, how crazy her life is, and that she deserves a break. And honestly, it’s nothing in the grand scope of parenting. She deserves more time off, but with Mel’s school, small kids, and my job, even an evening off a week can be hard to swing.
But none of that has been as challenging as helping Mel to understand that she does, indeed, deserve that time off, and if she does take it, she’s not being selfish.
“I’m not giving up on this,” I said. “You will take time off from the kids. And you will enjoy it. What day are you going to take off next week?”
We talked about our schedule, our next week, what evening would work best. “Saturday,” I said. “That will work.”
“Yes,” she said. “Okay.”
“Good,” I said. “And don’t feel guilty, okay?”
She smiled. “I won’t.”
We’ll keep working on that.
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Tuesday, June 9, 2015
MOEBIUS SYNDROME IN THE NEWS
Just in case you have not seen it yet--news from the Moebius Syndrome Foundation:
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Pilot Grove, MO - The Moebius Syndrome Foundation, the nation's largest organization dedicated to the support of individuals and families with Moebius syndrome, is proud to announce Kim Cunningham as its new executive director. She began her new position on June 8, 2015.
Cunningham brings the organization more than fifteen years of executive leadership, communications and development experience in the nonprofit sector. Previously, she served as Executive Director for the Children's Well-Being Foundation and as Director of Public Relations and Managing Director of Development for the American Medical Student Association, the oldest and largest independent organization of physicians-in-training in the United States. Cunningham has extensive experience in the healthcare industry and with patient advocacy organizations.
"We are happy to have Kim on board to take the Moebius Syndrome Foundation to the next level," says Vicki McCarrell, President and Co-Founder. "Kim's experience in communications, development, and leadership will help raise awareness of this rare neurological congenital condition which renders those affected with 'smiles that come from the heart.' "
"The Moebius Syndrome Foundation has a powerful mission and I am honored to have been selected to serve the organization and work with this amazing community," says Cunningham. "As the first executive director, this is an exciting time for the Foundation. I look forward to this new challenge and will dedicate myself to raising awareness and understanding of Moebius syndrome."
About the Moebius Syndrome Foundation
Founded in 1994, the Moebius Syndrome Foundation provides information and support to individuals with Moebius syndrome and their families. The Foundation promotes greater awareness and understanding of Moebius syndrome and advocates for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions. For more information on Moebius syndrome, the Foundation or becoming a member, please visit www.moebiussyndrome.com.
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Pilot Grove, MO - The Moebius Syndrome Foundation, the nation's largest organization dedicated to the support of individuals and families with Moebius syndrome, is proud to announce Kim Cunningham as its new executive director. She began her new position on June 8, 2015.
Cunningham brings the organization more than fifteen years of executive leadership, communications and development experience in the nonprofit sector. Previously, she served as Executive Director for the Children's Well-Being Foundation and as Director of Public Relations and Managing Director of Development for the American Medical Student Association, the oldest and largest independent organization of physicians-in-training in the United States. Cunningham has extensive experience in the healthcare industry and with patient advocacy organizations.
"We are happy to have Kim on board to take the Moebius Syndrome Foundation to the next level," says Vicki McCarrell, President and Co-Founder. "Kim's experience in communications, development, and leadership will help raise awareness of this rare neurological congenital condition which renders those affected with 'smiles that come from the heart.' "
"The Moebius Syndrome Foundation has a powerful mission and I am honored to have been selected to serve the organization and work with this amazing community," says Cunningham. "As the first executive director, this is an exciting time for the Foundation. I look forward to this new challenge and will dedicate myself to raising awareness and understanding of Moebius syndrome."
About the Moebius Syndrome Foundation
Founded in 1994, the Moebius Syndrome Foundation provides information and support to individuals with Moebius syndrome and their families. The Foundation promotes greater awareness and understanding of Moebius syndrome and advocates for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions. For more information on Moebius syndrome, the Foundation or becoming a member, please visit www.moebiussyndrome.com.
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Monday, June 8, 2015
INFORMATION DEPT.
Children with Moebius Syndrome sometimes (though by no means always) have autistic tendencies as well; so we try to keep up with autism news here. Today: recent research indicates that one's level of autism can be tied to stress levels:
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The severity of a child’s autism may be directly linked with the level of stress or anxiety they experience on a day-to-day basis, a new study suggests.
Levels of the stress-hormone cortisol remain significantly higher throughout the day in children with low-functioning autism as compared to typically-developing kids and those on the high-functioning end of the spectrum, according to findings published in the Journal of Developmental and Physical Disabilities.
For the study, researchers at Canisius College in Buffalo, N.Y. collected saliva samples three times each day over two different weekends from 43 kids ages 7 to 12. The group included children with no diagnosis as well as kids with autism and an IQ below 70 — considered low-functioning — and high-functioning individuals with IQs above 85.
All of the children exhibited typical patterns in their cortisol levels, with the hormone at its highest in the morning and getting progressively lower throughout the day. However, the exact amount of cortisol seen in low-functioning children was distinct, researchers found.
“Children with (lower-functioning autism) had significantly higher cortisol, the stress indicator, across the day than both the (high-functioning children with autism) and typical children and, interestingly, children with (high-functioning autism) did not significantly differ from the typical children across the day,” said Susan Putnam of the Institute for Autism Research at Canisius College who led the study.
Putnam and her colleagues said the results point to a link between stress in the body and functioning ability and IQ. However, it is unclear, they said, whether the increased cortisol observed in those with more severe autism is a result of neurological impairment or heightened sensitivity to the environment.
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In other news: the US Labor Department says that the number of persons with disabilities active in the American workforce is on the rise:
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The number of people with disabilities in the workforce is ticking up, the U.S. Department of Labor said Friday.
Figures from the agency’s monthly employment report indicate that more Americans with disabilities were employed in May than the month prior, though the unemployment rate for this population remained largely unchanged at 10.1 percent.
Meanwhile, the Labor Department reported that 280,000 jobs were added to the economy as a whole and the employment rate for the general population also remained steady at 5.5 percent.
Federal officials began tracking employment among people with disabilities in October 2008. There is not yet enough data compiled to establish seasonal trends among this population, so statistics for this group are not seasonally adjusted.
Data on people with disabilities covers those over the age of 16 who do not live in institutions. The first employment report specific to this population was made available in February 2009. Now, reports are released monthly.
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