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Women of dignity

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Producer and director Mary Olive Smith’s new documentary, A Walk to Beautiful, follows five Ethiopian women who struggle with an isolating medical condition and who set out on a search for treatment.

 

A lack of basic health care during pregnancy and delivery in parts of Africa leaves some women with debilitating physical injuries after childbirth. Mary Olive Smith’s new documentary A Walk to Beautiful examines their hardships — and their quest for a cure.

Smith recently spoke with filmmaker and ITF Director Andrew Blackwell about how the documentary came about, the women in the film, and the political implications of her decision to let the camera linger on Ethiopia’s incredible landscapes.

Interviewer: Andrew Blackwell
Interviewee: Mary Olive Smith
 
What is the story of A Walk to Beautiful?
 
It’s about five women in Ethiopia who have suffered from serious childbirth injuries, and live in isolation and loneliness as a result. The film follows their journeys to a special hospital in Addis Ababa, where they hope to find a cure.

The real story is one of women who have been shunned by society and who are trying to regain their dignity and their lives, and become whole people again. It’s a human story, a story of personal transformation, not a medical story. The medical problem is the struggle, and we explain that, but the journey is a personal one.

 
What is the medical problem they are struggling with?
 
It’s called fistula, and it’s really a hidden problem. Very few people know it exists. The [United Nations] U.N. campaign to deal with it only began five years ago, although the problem has been around as long as humankind.

It’s an injury that is caused by prolonged, unrelieved, obstructed labor. Even in the [United States], obstructed labor occurs in 5 percent of all deliveries, but here the problem is overcome by Caesarean delivery. But in the poorest countries of the world, where there are not enough doctors or hospitals, these women basically need a Caesarean section, but don’t receive it. And there are higher rates of obstructed delivery as well, due to early marriage and pregnancy as well as malnutrition. So these women end up in obstructed labor for days on end, and they either die or they end up with severe injuries. They can be crippled, or get fistula, which causes incontinence.
 
The reason they’re incontinent is that, after days and days of obstructed labor, they end up with a hole between the vagina and the bladder. And there’s no way to get better without surgery. The bladder doesn’t hold the urine, so it’s constantly coming out. They smell, they are too poor even to have diapers or underwear, and it doesn’t matter how much they wash.

They think they are cursed. They have no idea that it’s a physical injury. Many of them go to hospitals, and the hospitals don’t know what to do with them. And their communities shun them. A lot of the doctors call them modern-day lepers. They are no longer part of society. They just disappear. The response depends on the family, but as a rule, they no longer can hang out at the market or at the well. Some of them are so afraid and ashamed that they go to wash their clothes at night, and their families just leave food out for them.

There are exceptions, in which the family maintains strong support, and it varies from country to country. But in rural Ethiopia, the stigma is very strong. It’s not that they blame the person; they just don’t want to be around them. And the women are too ashamed to go out as well. For the most part, they are rejected by their community. In the case of Ayehu, a young woman who we followed for the film, her siblings were really cruel. Her mother was her only defender. When we met Ayehu, we found her living in a makeshift lean-to that she had put together with sticks against the outside of the back wall of her mother’s house. She would crawl in there and sleep on the floor. Even during the day, she would just sit in there. She would never come in to the house; she wasn’t allowed.

 
Why is the community and family response so harsh?
 
The families don’t abandon them at first. I met family after family who took them to the hospital. They’ll sell their goats to raise money to try to get them help. But often they don’t encounter anyone who knows how to deal with fistula, and if they haven’t heard about the Addis Ababa Fistula Hospital, or if it seems too far away, then there’s nothing they can do.

It’s true, women in these areas are second-class citizens: They do most of the work, they don’t have property rights, and they are definitely subordinate. But if a man had the same condition, I think he might not be treated much differently. The smell is very bad; there’s no way to control the flow of urine, and people just don’t want to be around the person. I don’t think you can really point your finger at the culture. The situation comes more from poverty, which creates both the conditions that lead to the injury in the first place, and the circumstances that keep it from being treated.

 
How did you come to make a film about fistula?
 
I work for a company called Engel Entertainment, a documentary production house based in [New York City]. I’ve been working there for 12 years. The idea came from an op-ed in the New York Times by Nicholas Kristof in May, 2003, called “Alone and Ashamed,” in which he wrote about women at the hospital suffering from fistula. It was a really moving piece. A friend of Steve Engel, who is the president of our company, brought the idea to him, and Steve took it up as a documentary project. He asked me if I would be interested in directing the film, as I have a longstanding interest in human rights in general, and in Africa in particular. We had always done television in the past, for [stations] like Discovery, PBS, and so on. But this time we wanted to do it as an independent feature documentary.

 
And so the film follows these women to the hospital?
 
The first half of the film is that journey to the hospital. Ayehu knew about the hospital before we met her, but she was too afraid to go. Again, it’s a long way away, and they’re unsure if it’s going to be costly, and they’re afraid of going to the city. Going to Addis Ababa can seem like going to the moon for them. But she was convinced to go by another woman who had had the treatment. And so we followed her, as well as two other women, who made the journey separately. The trip means walking for hours and hours, and then a 16-hour bus ride. The treatment itself is free, and they can even get money for the trip home, if they can just get themselves to the hospital.
 
The middle of the film is at the hospital. When Ayehu gets to the hospital and is given a bed, you see her smile for the first time, as she realizes that she’s not the only one with this problem. … she is amazed that there are 120 women also there who have the same problem as her. And it’s a really open, neat place — very lively — and they can socialize. There’s a real transformation in them as people, even before they get the surgery.

The twist in the film is Wubete, another woman who we met in the hospital. At age eight, she was married off against her will. She was beaten by her husband, became pregnant by him, and had this fistula as a result of the delivery. She’s so beautiful, and her family doesn’t want her. But in her case, the treatment was more complicated, and it was unclear whether or not she would be cured, and we followed her as she dealt with that. In addition to her story, the latter part of the film shows the other women returning to their homes, and becoming part of their community again.

 
Ethiopia has a lot of stereotypes associated with it, going back at least to the famines of the 1980s, which received so much media coverage. But your film really seems to portray it in a different way.
 
Some films really show the squalor and hopelessness in African countries, so I really wanted to show how beautiful Ethiopia is. I get tired of the portrayal of Africa as a hell on earth. There is so much beauty and hope there. And there was such a contrast between Ayehu’s situation and the beautiful landscapes. So Ayehu’s leaving her shack and going on this journey through this beautiful environment sort of represents the hope in her poor conditions. Our cinematographer and editor really brought that out.
 
Although I hadn’t been to Ethiopia before, I wasn’t surprised at how beautiful it was, as I had been to other parts of Africa. And I wanted to bring out the beauty of the country, in a way to represent the dignity of the people there. The women in the film have so much dignity as they go through this process. Ethiopians in general have responded really well to the film. Although it shows a difficult situation in their country, they see the dignity of the people we show, and realize that it’s a personal story, not an indictment of their entire country.
 
Also, after the devastation of what the film shows — people often describe the film as “devastating” — there’s excitement that comes with realizing that these women can be helped. The Addis Ababa Fistula Hospital is becoming better known, and more women therefore have the possibility of making the journey there. And if you can imagine being a leper of sorts, and then after being treated, being allowed to rejoin the community again, there’s real joy there.

 
For those who wish to help women suffering from fistula receive restorative surgery and care, visit www.fistulafoundation.org.

 

Rewriting history

A woman travels halfway around the world to discover her true identity in Vendela Vida’s Let the Northern Lights Erase Your Name.

 

Clarissa Iverton’s mother once told her she was named not after Virginia Woolf’s Mrs. Dalloway, but Samuel Richardson’s Clarissa: “I named you after this Clarissa, with the hope that you’d rewrite history.” When that opportunity comes years later, it’s up to Clarissa to decide whether or not to take it, in this third book by Vendela Vida.

At 28 years old, Clarissa earns her living editing subtitles, cleaning up poor translations of foreign language films, and fixing other people’s words so that their meaning is clear. Ironically
though, nothing can fix the discovery of another man’s name where she expects to see her father’s listed on her birth certificate. Even more stunning, Clarissa’s fiancé admits that even he and his mother had known the truth for years. Never having fully come to terms with the disappearance of her mother, Olivia, 14 years earlier, this fresh vanishing of a parent sends Clarissa into an emotional and existential tailspin.

Adrift in grief and betrayal, Clarissa takes off for Finnish Lapland in search of her real father, the Sami man whose name is on her birth certificate. Clarissa’s search within the Sami community, despite her being unable to speak the language, is surprisingly fruitful, but not in the way she anticipates. In a complete reversal, the level of communication between Clarissa and the people she meets in Lapland is light years beyond the depth and breadth of the communication between the people with whom she shares a language, a home — even blood — prompting her to reexamine all she has previously believed about family, community, and identity.

Vendela Vida’s spare and concise prose is more like a series of vignettes than a long, detailed narrative. Yet it makes real to the reader the desolation and isolation of Finnish Lapland’s geography, of the insular Sami people, and of Clarissa’s feelings of aloneness. In spending two weeks among the Sami, Clarissa isn’t known as Olivia and Richard’s daughter, Jeremy’s sister, Pankaj’s fiancé; she’s half a world away from home and stripped of the identity pressed upon her by those around her.

It’s only through reconciling what she’s learned about her family history with what she articulates about her own personal history that she can even consider rewriting anything, balancing what her family — her mother in particular — may owe her and what she owes them. Only by fully realizing the truth of who she is and where she is from, can Clarissa transcend a legacy of secrets, betrayal, and grief.

 

RAYMOND

Finding friendship in West Africa.


 

The women next to me are crying. Silently, to themselves, but unabashedly. As the men in the truck bed look over the terrain, their faces are abnormally blank and sullen. My face is squished against the window in the crowded back seat, and I notice the ubiquitous red dust (a staple of West Africa) flying off of the road as we drive. Like it does every day, today it coats the banana leaves, cocoa trees, and assorted green bushes that cover Ghana. People are still walking along the road with baskets on their heads, smiling at everyone they meet and maneuvering around goats that flood the streets and bleat loudly. 

But unlike these people who move to the normal, almost ineluctable West African rhythm, today does not feel like a normal day for me. In shock, I can’t believe that I’m driving along a dusty road in Ghana, with the wind whipping in through open windows, and my dead friend Raymond wrapped in a blue bed sheet on the truck bed behind me.

•••

I’d only met Raymond once before that day. About a week into my six-week volunteer stint in Ghana, I began working in the Accidents and Emergencies Ward in the Volta Regional Hospital — a different experience from being in American emergency departments, because the hospital had no ambulances, defibrillators, or electrocardiograms (EKGs). The primary emergencies that they managed were broken bones, sutures, or diabetic emergencies requiring IV fluids.
 
Because I didn’t speak the native language, Ewe, I felt like I was being ignored in the hospital ward. After about a week-and-a-half of this, I wandered over to the General Male Ward where I knew some other volunteers were working. I spotted Katie, with her short, curly hair escaping from the pigtail braids she had tried to wrestle it into, and the top half of her head bleached blonde from the sun. She had taken out her large, silver nose ring, but I could still see the two bluebird tattoos peek out from behind the straps of her tank top. Amy, a quiet, blonde volunteer, was hunched over a shopping bag on a windowsill. As I entered the ward, she looked up and kindly smiled before pulling a package of adult diapers out of the bag.

Katie called me over to where she was, sitting at the head of a bed with the remnants of a Fanchoco ice-cream bar coating her hands. “This is Raymond,” she explained, gesturing to a rail-thin figure lying on the bed next to her, “and he is here from Togo.” 

Immediately I felt excited because I could practice my French with him. Katie patted his arm and told me that he had “eaten some bad beans” that made his stomach hurt, and that medicines from an herbalist had only made him more sick. The family took him to one hospital, but the hospital’s operating room “couldn’t help him,” and so they sent him to the Regional Hospital. In the meantime, the wound from his surgery dehisced so that the intestines basically spilled out through the hole. They were held in only by the diapers that he wore in the hospital.

Without much muscle mass, Raymond was basically a skeleton wrapped in a sheet of his own skin. I stared at his huge feet attached to twig-like legs. His knees were by far the largest part of his legs, bulging out like two baseballs between two muscle-less sticks. When Katie told Raymond my name, he looked at me with velvety brown eyes. His eyes reflected a thousand pains, but they were also the strong eyes of a 17-year-old boy. Reclining amidst a sea of sheets, he held out a limp hand with long fingers for me to shake.

•••

We all chatted for a while, learning about each other’s lives. Raymond told us how his sister sold green beans in the marketplace in their hometown, Aflao. He eventually asked Katie when she was returning to the United States. I translated for Katie while she pointed to a date in her planner. August 4. “That is when I go home,” she said, being careful to speak without contractions like the Ghanaians did.

Raymond turned his wide eyes to me and stated matter-of-factly, “I will go with her then. Tell her I go to America, too.”

As I relayed the message to Katie, I shifted my feet beneath me and glanced at Amy, who was still sitting on the windowsill next to Raymond. Katie looked at me with thoughtful, slightly sad brown eyes, and then playfully patted Raymond’s hand. “I’ll try,” she said grinning at him, “but you have to get some more muscle before then!” 

I decided to translate “try” as essayer. Once Raymond understood me, his eyes bulged with alarm, and his whole body writhed as he shouted, “No! Not try! Will! Will! You will bring me with you!”

Katie stared pensively at Raymond’s smooth hands as he assured her that he would be big and strong in three weeks. Nodding along, she untwined her fingers from his and turned his palm over delicately. Sliding her hand over his, she wrapped her fingers around his wrist. “OK, Raymond,” she said, noticing how her fingers made a complete circle around his arm, with room to spare on all sides, “I will. But remember, big and strong.”

Raymond nodded at her and found a pencil from a table next to his bed. With shaky but deliberate movements, he leaned over Katie and wrote his name, RAYMOND, in her planner underneath August 4. “Now it is a plan,” he explained, pulling up a sheet so that it covered his diaper. “I am going to America.”

•••

About a week later we went to the hospital again and brought more volunteers. I was laughing as Katie stomped and banged on her Jimbe drum, imitating our drum teacher, Joseph, and his testosterone-filled teaching style. The drum had a resounding, hollow, but somehow pure sound that broke up the relative silence in the ward. As we walked in, one of the nurses (in Ghana, nurses are “Sisters”) smiled sheepishly from behind the administrative desk. Her hand stopped its casual lilt on the page, and hesitated for just a moment. “You are here to see Raymond?” she asked out of complete stillness.

“Yes,” we answered, blundering into the room and talking amongst ourselves.

“Ah.” Pause. “We lost Raymond this morning.”

I turned my head to the Sister, whose hand was still frozen on the page, and Katie stopped drumming. We all stood still. The Sister’s words hung in the air like reverberations from a musical performance, and in their silence they were almost as loud as the sounds from the Jimbe drum. The sudden change from loud to quiet echoed the unexpected news we had just received, and I couldn’t believe what had happened. 

•••

It was a particularly warm day when we got Raymond’s body from the morgue. It’d been about a week-and-a-half since he died, and his body had been kept in refrigeration. When they brought Raymond out, I was shocked by how peaceful he looked. He was so still that it was as if he had eternally extended the pause between inhaling and exhaling so that there was a breath trapped inside of him. His mother and Katie couldn’t stand to see him, and so I cleaned his body with two of his aunts and Becca, a nursing student volunteer with a sunny disposition and a go-getter attitude. 

I kept wondering why I was cleaning his body in the first place. Holding his lifeless left hand, I realized that I had only met this boy once before, and that I hardly knew him at all. I wasn’t sure why I even cared about what happened to him. But as I wiped his elbow with a rag, I thought about how happy it had made him that we came to visit him. I realized that the whole reason I came to Ghana was to connect with new people and to learn from their life experiences. I’d certainly met many people when I observed a physician, blood lab technicians, or a traditional bone healer. By spending time with these people I was able to learn a lot about their life stories. 

But I just sort of stumbled upon Raymond and his story, and it still impacted my life. I realized that these informal relations are clearly important ways to make a connection with other people. Even more significantly, I understood that by making Raymond even a little bit happier, I had affected his life as well. Gazing into his slightly sunken, matted eyeballs, I realized that I was giving back to him for what he had taught me. It became clear that these sorts of informal connections, with Raymond and with other West Africans, were not only important, but actually some of the most significant ways through which I gave back to Ghana.

Back with Raymond, I still felt confused as I moved the rag between his bony fingers, but I also felt in awe of our own connection and what it meant.

•••

It is almost afternoon by the time we leave the morgue and arrive at Raymond’s family’s house in Aflao with his body. We plow quickly through the unpaved streets, which are more like glorified paths, and dodge chickens and avoid hitting huts on either side by six inches. 

When we pull into a clearing, people are milling about between the noises of chickens and goats. Jumping out, the men seem to know what to do and start speaking in Ewe. Against the backdrop of a dialect that sounds like a rushing brook, I feel completely confused.

Raymond’s mother grins at me with the type of smile that turns complete strangers into instant friends. Other volunteers had mentioned that she had been extremely distraught over her son’s death for about a week, but it looks like she has finally calmed down and is able to interact with other people. She waves me over to a group of people who are the rest of Raymond’s family. I almost cry when his younger sister looks at me with her huge eyes and holds out a hand that also has long fingers like Raymond’s. 

The men hoist Raymond’s body onto their shoulders and carry him to a sandy area. I guess this is a cemetery, though the only grave markers are Coke cans and plastic wrappers. One of the family members starts digging a large hole to my right. I am still confused about what I should be doing, and so I stay back with Becca, kicking the sand with my flip-flop. I watch Raymond’s father lower his son into the hole, and I watch the different layers of sand cascade around Raymond. “No grave marking,” everyone explains to me, but “maybe the family will plant a tree later.” I take a last look at the grave, now a wet patch of sand, and go back to the compound, stepping on a dusty Fanchoco wrapper on the way.

Back in the clearing, in the huts, I meet members of Raymond’s extended family. I shake about 20 hands, and I see so many faces that are creased with age and worry, but they crinkle even more with warm smiles for me. I feel embarrassed, like I haven’t done anything to deserve this kind of unstinting love from strangers. Raymond’s mother gives me a huge hug as she sobs silently, and Raymond’s sister kisses me on the cheek as she walks back elegantly to her father, like a dignified queen, even though she is crying.

Continuing this generosity, someone hands me a coconut he has just chopped open and his eyes simply say, “Thank you.” As I drink the milk, another relative throws more and more coconuts back into the pick up truck. After convincing them that I cannot take coconuts with me, I slide back into the truck and wave goodbye. 

 

 

When rape becomes normal

Brutality against women as a weapon of war.

[Click here to listen to podcast.]  

 

In an open-air hospital waiting room in Bukavu, a city in the Democratic Republic of Congo, 400 women sang a song, asking God to bring peace.
 
They were tired, sick, and ashamed, all of them victims of rape, which has become the disturbing signature feature of the Congo’s unending war during the last decade.

Much attention has been paid to the brutality against women in the Congo’s war, but despite the worldwide news coverage, rape in the Congo has become standard.

Each day, more than 250 rape victims come to Panzi Hospital to be treated.

Dr. Denis Mukwege Mukengere, chief of obstetrics and gynecology at Panzi, has found himself at the forefront of the crisis. “You see thousands upon thousands upon thousands of people who are completely destroyed and left lifeless, and you know the world knows about this,” he said. “I’ve begun to lose my faith in mankind.”

He hasn’t always been the spokesman for tens of thousands of rape victims, but it was when he was working in rural areas that the crisis unraveled before his eyes.

In the late 1990s, Dr. Mukwege calculated that he saw about 50 women every year who had genital mutilation from violent rape. The war was to blame, and the number of rape victims grew “exponentially,” he said.

“I had never seen women with wounds to their genitals like this,” Dr. Mukwege said. “They shot them in the vagina or cut them with a bayonet.”

Rape has proven to be an effective strategy for the armed groups, forcing people to flee their homes, he added. Women who are raped face death, either by HIV (the AIDS virus) or infection. Men face shame, because they are often forced to participate in the rape acts. Villages go empty, except for the children, livestock, and goods left behind as booty for the rebel groups, he explained.

Dr. Mukwege works 14-hour days, seven days a week, and is the only surgeon around qualified to perform complex gynecological surgeries. Twenty-five percent of the rape victims who come to Panzi must undergo surgery to repair their torn tissues, he said.

In the surgery ward, hundreds of thin women lay on metal beds next to each other, wearing but threadbare cloths and protected by patchwork mosquito nets. Rubber hoses drip into open plastic buckets at the feet of their beds.

Inside his office, Dr. Mukwege spoke with a mix of outrage and exhaustion. His experiences with rape victims were documented in the 2002 Human Rights Watch report The War within the War: Sexual Violence against Women and Girls in Eastern Congo.

And he has been telling the international press about this crisis for years.

But despite coverage by media outlets that include BBC, CNN, and The New York Times,
the gruesome violence has turned even more troubling: It has become normal to both the international community and the local people, Dr. Mukwege said.

“That’s my fear, because we’ve shouted ‘Rape, rape, rape!’ And when nothing is done, it’s total impunity. Those who commit these acts — they know they can get away with it,” Dr. Mukwege said.

The result is a problem “so vast, but also in a sense forgotten, in terms of the international radar screen,” said Pernille Ironside, a child protection specialist for UNICEF in Eastern Congo.

“But in reality, what we are seeing in terms of sexual violence in the Congo is unparalleled in any other country.”

Listeners of Radio Okapi, a local station, can listen to daily reports of rape, but Dr. Mukwege feared the routine reporting was leaving the community numb.

Additionally, his patients have come to see their lives as worth nothing, Dr. Mukwege said.

One woman described her life as less valuable than that of a chicken, he said. “A chicken is someone’s property, and they protect it. And if you kill your neighbor’s chicken, the neighbor says to you, ‘You’re a bad person, why did you kill the neighbor’s chicken?’” he recalled her explaining to him. “But when I go out and get wood and other things, they just take me and rape me,” she told him.

Dr. Mukwege said he no longer listens to his patients’ stories. They are too emotionally draining, so he just sticks to performing operations.

“I thought I could help them,” he said. “But in the end, I understood that I got more and more depressed.”

Dr. Mukwege hosts reporters in between surgeries, but is skeptical of the value.

“I’ve seen important people in this world pass through the hospital. I’ve seen them in tears, and then nothing is done,” he said. 

Women waiting outside Panzi Hospital sing to God for peace.

When Rape Becomes Normal

Despite worldwide news coverage, the brutality against Congolese women has become standard. Rape has proven to be an effective strategy for the armed groups in the country's unending war.

Click here to listen to podcast.

Women outside Panzi Hospital in Bukavu, Democratic Republic of Congo
Women waiting outside Panzi Hospital sing to God for peace.

In an open-air hospital waiting room in Bukavu, a city in the Democratic Republic of Congo, 400 women sing a song, asking God to bring peace. They are tired, sick, and ashamed, all of them victims of rape, which has become the disturbing signature feature of the Congo’s unending war during the last decade.

Despite worldwide news coverage, the brutality against Congolese women has become standard. Each day, more than 250 rape victims come to Panzi Hospital to be treated. Dr. Denis Mukwege Mukengere, chief of obstetrics and gynecology at Panzi, has found himself at the forefront of the crisis. “You see thousands upon thousands upon thousands of people who are completely destroyed and left lifeless, and you know the world knows about this,” he says. “I’ve begun to lose my faith in mankind.”

He hasn’t always been the spokesman for tens of thousands of rape victims, but it was when he was working in rural areas that the crisis unraveled before his eyes. In the late 1990s, Mukwege saw about fifty women every year who had genital mutilation from violent rape. The war was to blame. “I had never seen women with wounds to their genitals like this,” he says. “They shot them in the vagina or cut them with a bayonet.”

Since then, the number of rape victims has grown “exponentially,” Mukwege says. Rape has proven to be an effective strategy for the armed groups, forcing people to flee their homes. Women who are raped face death, either by HIV (the AIDS virus) or infection. Men face shame, because they are often forced to participate in the rape acts. Villages go empty, except for the children, livestock, and goods left behind as booty for the rebel groups.

Women in beds at Panzi Hospital in Bukavu, Democratic Republic of Congo
Women recovering from fistula surgery.

Mukwege works fourteen-hour days, seven days a week, and is the only surgeon around qualified to perform complex gynecological surgeries. Twenty-five percent of the rape victims who come to Panzi must undergo surgery to repair their torn tissues, he says.

In the surgery ward, hundreds of thin women lay on metal beds next to each other, wearing threadbare cloths and protected by patchwork mosquito nets. Rubber hoses drip into open plastic buckets at the feet of their beds.

Inside his office, Mukwege speaks with a mix of outrage and exhaustion. (His experiences with rape victims were documented in the 2002 Human Rights Watch report The War within the War: Sexual Violence against Women and Girls in Eastern Congo.) He has been telling the international press about this crisis for years. But despite coverage by the BBC, CNN, and the New York Times, the gruesome violence has turned even more troubling: it has become normal to both the international community and the local people, Mukwege says. “That’s my fear, because we’ve shouted ‘Rape, rape, rape!’ And when nothing is done, it’s total impunity. Those who commit these acts — they know they can get away with it.”

The result is a problem “so vast, but also, in a sense, forgotten, in terms of the international radar screen,” says Pernille Ironside, a child protection specialist for UNICEF in Eastern Congo. “But in reality, what we are seeing in terms of sexual violence in the Congo is unparalleled in any other country.”

Listeners of Radio Okapi, a local station, can listen to daily reports of rape. Mukwege fears the routine reporting is leaving the community numb. His patients have come to see their lives as worth nothing.

Dr. Denis Mukwege Mukengere outside Panzi Hospital in Bukavu, Democratic Republic of Congo
Dr. Denis Mukwege Mukengere, leaving his office at Panzi Hospital.

One woman described her life as less valuable than that of a chicken, he says. “A chicken is someone’s property, and they protect it. And if you kill your neighbor’s chicken, the neighbor says to you, ‘You’re a bad person, why did you kill the neighbor’s chicken?’” the woman explained to Mukwege. “But when I go out and get wood and other things, they just take me and rape me.”

Mukwege says he no longer listens to his patients’ stories. They are too emotionally draining, so he just sticks to performing operations. “I thought I could help them. But in the end, I understood that I got more and more depressed.” He continues to host reporters in between surgeries, but is skeptical of the value.

“I’ve seen important people in this world pass through the hospital,” he says. “I’ve seen them in tears, and then nothing is done.”

UPDATE, 3/8/13: Edited and moved story from our old site to the current one.

 

You Really Can’t Go Home Again

Best of In The Fray 2008. Anya Ulinich’s Petropolis tells the tale of a Russian immigrant’s coming-of-age journey in America.

Anya Ulinich’s poignant and bittersweet debut novel, Petropolis, chronicles a teenager’s coming-of-age as seen through the lens of post-Soviet Russia. Motherhood, cultural and personal identity, and survival are woven into a literary narrative that follows misfit 15-year-old Sasha Goldberg from the Siberian outpost of Asbestos 2 to upper middle-class Brooklyn, only to find she will get what she wanted all along — albeit at a price she never realized she would have to pay.

Lubov Alexandrovna Goldberg’s tenacious grip on the intelligentsia goes, for the large part, unnoticed by her daughter. Sasha’s more preoccupied with her missing father, long-gone for America. Lubov, on the other hand, simply removed all traces of him and behaves as if he never existed. The two live quietly, if combatively, in a small Siberian town where the primary economic activity, asbestos mining, has seen more productive days.

Lubov is obsessed with fitting in, while misfit Sasha suffers the abuse heaped on her by other kids because she’s different; she is biracial, Jewish, and overweight. While Lubov dreams of securing a place for her daughter among the Moscow intelligentsia, Sasha, like any other teenage girl, is preoccupied with boys. She is especially enamored of one in particular who comes from a family that Lubov would never approve of.

Sasha’s unexpected pregnancy sets her story on a trajectory to Moscow and beyond. While Lubov hopes to protect her daughter’s future by raising Sasha’s child as her own, motherhood propels Sasha on a quest for the life that would allow her to reunite with her daughter as the child’s mother. One mail-order bride transaction later, Sasha finds herself unhappily engaged to an American man in Arizona. Once there, she decides to find her father, leading her on a cross-country journey that forces her to ultimately define her own identity and make her own future if she is to survive.

Sasha’s child-like, perpetual hope that Asbestos 2 remains the same while she is away, that someday she will be able to return to her hometown and reclaim the child, Nadia, as her own, evolves almost imperceptibly into an adult realization that things can never remain the same, the visual confirmation of which comes with her final visit to Asbestos 2.

Ulinich’s powerful final chapters synthesize the whole of Sasha’s experiences up to that point, allowing Sasha to cross over that invisible line that separates children from adults, with meaningful, thoughtful prose that resonates far beyond the immigrant experience.

As one character tells Sasha, she does not have to split off her childhood memories, as the key is “living in the world, not in a town.” Sasha counters that all Americans are alike: “You think that where you live is the World” (emphasis in original). Sasha notes that her descendants will merely think of themselves as from “Eastern Europe somewhere” rather than know Asbestos 2. By staunchly affirming who she is and where she comes from, Sasha makes firm her place — and her family’s place — in the world. And in the final poignant scenes, Sasha knows that place — that story that began in the far reaches of Siberia — remains immutable, regardless of her future.

With Soviet Russia and its days of homogeny over, in Petropolis, Sasha is emblematic of the new Russia. A direct descendant of a 1957 cross-cultural youth festival, she is culturally and ethnically different from most inhabitants of Asbestos 2, and she is culturally and ethnically different from most Americans she meets.

Curiously, more than any other theme in the book, it is the push and pull of motherhood that most defines Sasha and her relationships across cultures. In Asbestos 2, in Arizona, in Chicago, in Brooklyn, it is motherhood that binds and divides Sasha and the women in her orbit, setting them up as either ally or adversary for Sasha, and sometimes both. It is her child and the hope for a better future for that child that drive Sasha to survive, be it enduring a loveless engagement or the quicksand of misguided charity from an affluent, socially conscious Chicago family, whose actions imprison her more than what they perceive she must have suffered under Soviet rule.

Ulinich’s vivid descriptions make Sasha’s world come alive. Her ability to juxtapose the barrenness of Siberia with the lush landscape of Arizona, and later with Midwestern woods and Brooklyn brownstones, serves to subtly play up the differences and similarities in geography and culture.

With a comic sensibility, Ulinich’s eye for satire and cosmic absurdity illuminates the narrative in a way that elevates it beyond what most readers might expect from a debut novel. While Petropolis is a bit slow in the beginning and slightly awkward in the epistolary sections, where the narrative gets a bit jumpy, Ulinich, who shares some measure of personal experience with Sasha, as both are Russian immigrants to the United States, offers up a well-told, richly layered narrative that goes beyond the usual coming-of-age story.

 

Cooking like an Egyptian

200802_interact1.jpgTo learn about my heritage, I took classes in Arab politics and history. But they couldn’t make up for what I’d missed in the kitchen.

 

Weaving my way through the cramped aisles of the Middle Eastern import shops near my home, I felt a pang of nostalgia for my family in Egypt. As a little girl, I’d watched my aunts sift through bags of rice and roll stuffed grape leaves into neat logs. But it’s been 14 years since I was last in Egypt. I realized I was an outsider.

Growing up in Virginia with a Scottish mother and Egyptian father, I lived in a blend of accents, skin colors, and tastes. My mother whipped up everything from cornbread and chili to shepherd’s pie and Peruvian stew. I knew the difference between coriander and cilantro by the time I was six, and I could name all the vegetables at the farmer’s market. But Egyptian food was mostly a mystery.

In the Arab world, culinary traditions are usually passed down from mother to daughter, and, far away from his mothers and sisters in Egypt, my father had no way to recreate the dishes he ate growing up.

In college, I took classes on Arabic language, politics, and history. But I was missing something essential.

“I bet my mom’s goulash is better than yours,” one friend boasted.

“What’s goulash?” I whispered to another friend, Sara Elghobashy.

Her large Egyptian eyes widened.

I might have been well-versed in the rise of the Ottoman Empire, but I was a stranger to daily Arab life.

So Sara, raised in New Jersey but born in Egypt, agreed to teach me how to cook like an Egyptian.

Food is a pivotal part of Arab culture.

“I would much rather offer someone a plate of hummus than lecture to them on the geopolitical history of Amman,” says the Jordanian-American author Diana Abu-Jaber, who writes about food in her novels. “I think in the end you probably learn more about Middle Eastern culture — its earthy, delicious, hearty nature — from eating the hummus.”

As Sara and I shopped for ingredients for stuffed grape leaves and Egyptian rice pudding, greater ambitions took hold.

“Why stop with grape leaves?” I thought. “Why not eggplants and peppers and zucchini? Why not kebabs and falafel?”

But wise Sara knew to start slowly. We began chopping onion, parsley, tomato, mint, and dill. Add rice and ground meat, and you have the standard filling for all stuffed vegetables called mahshy. Sara’s roommates and I gathered around the table, and she showed us how to stuff each leaf and roll it into a perfect parcel. Her fingers worked quickly, tucking the green ends in as she rolled, locking all the delicious filling inside.

I gingerly picked up a delicate leaf and plopped a dollop of filling in the center, just as Sara had. But the filling squished out through the edges, leaving me with a messy blob.

“That looks great!” Sara lied, as I placed the blob into a pot lined with onions and peppers to infuse the leaves with even more flavor, a trick Sara got from her mother.

“Growing up, my mother was always in the kitchen, so if you wanted to talk to her, you had to go to the kitchen,” Sara said. “When I got to college, I realized that I could recreate most of the meals just from memory.”

After about five minutes, the pot began to sputter and spit broth. One of my leaves had exploded, spewing rice down the side of Sara’s stove.

For the rice pudding, Sara tossed rice and coconut into a baking dish filled with water and milk. She watched me with a perplexed look as I carefully measured two cups of sugar into a measuring cup.

“I never thought of using one of those,” she said. “All my measurements are from my mother, and two cups for an Egyptian are totally negotiable.”

After about two hours, the grape leaves were tender and the rice inside fluffy. We piled them atop a platter, burying the exploded one at the bottom. Traditionally, a full meal would begin with soup, followed by the mahshy, then either chicken or spiced meatballs called kofta.

The pleasant bitterness of the leaves contrasted nicely with the faintly sweet filling. After dinner, we pulled the pudding from the oven, where it had solidified more than Sara wanted.

“I swear my mother is keeping something from me,” she said while I cut the rice into squares. “No matter how much milk I put in, it’s never as creamy as hers.”

But the pudding was thick and delicious.

Back home, I found an email from my father in my inbox. I hadn’t yet told him about my plan to cook my way into Egyptian culture. But maybe he could smell the rice pudding all the way from Virginia.

“Today I tried to cook rice pudding like my mother used to make,” he wrote. “It didn’t turn out right, though. I called your aunt to ask for help but she didn’t pick up. It’s sitting in the fridge now uneaten.”

“You don’t need to call Aunt Nagwa,” I wrote back. “I’ll teach you when I come home for Thanksgiving.”

And with one click of the send button, I finally felt like an Egyptian.

 

Mitt Romney’s “JFK” speech

Faced with concerns over his faith, Mitt Romney delivered his "Faith in America" speech about politics and religion on December 6, 2007, at the George Bush Presidential Library in College Station, Texas.

It is an honor to be here today. This is an inspiring place because of you and the first lady, and because of the film exhibited across the way in the Presidential Library. For those who have not seen it, it shows the president as a young pilot, shot down during the Second World War, being rescued from his life-raft by the crew of an American submarine. It is a moving reminder that when America has faced challenge and peril, Americans rise to the occasion, willing to risk their very lives to defend freedom and preserve our nation. We are in your debt. Thank you, Mr. President.

Mr. President, your generation rose to the occasion, first to defeat Fascism and then to vanquish the Soviet Union. You left us, your children, a free and strong America. It is why we call yours the greatest generation. It is now my generation’s turn. How we respond to today’s challenges will define our generation. And it will determine what kind of America we will leave our children, and theirs.

Americans face a new generation of challenges. Radical, violent Islam seeks to destroy us. An emerging China endeavors to surpass our economic leadership. And we are troubled at home by government overspending, overuse of foreign oil, and the breakdown of the family.

Over the last year, we have embarked on a national debate on how best to preserve American leadership. Today, I wish to address a topic which I believe is fundamental to America’s greatness: our religious liberty. I will also offer perspectives on how my own faith would inform my presidency, if I were elected.

There are some who may feel that religion is not a matter to be seriously considered in the context of the weighty threats that face us. If so, they are at odds with the nation’s founders, for they, when our nation faced its greatest peril, sought the blessings of the Creator. And further, they discovered the essential connection between the survival of a free land and the protection of religious freedom. In John Adams’ words: "We have no government armed with power capable of contending with human passions unbridled by morality and religion … Our constitution was made for a moral and religious people."

Freedom requires religion just as religion requires freedom. Freedom opens the windows of the soul so that man can discover his most profound beliefs and commune with God. Freedom and religion endure together, or perish alone.

Given our grand tradition of religious tolerance and liberty, some wonder whether there are any questions regarding an aspiring candidate’s religion that are appropriate. I believe there are. And I will answer them today.

Almost 50 years ago another candidate from Massachusetts explained that he was an American running for president, not a Catholic running for president. Like him, I am an American running for president. I do not define my candidacy by my religion. A person should not be elected because of his faith, nor should he be rejected because of his faith.

Let me assure you that no authorities of my church, or of any other church for that matter, will ever exert influence on presidential decisions. Their authority is theirs, within the province of church affairs, and it ends where the affairs of the nation begin.

As governor, I tried to do the right as best I knew it, serving the law and answering to the Constitution. I did not confuse the particular teachings of my church with the obligations of the office and of the Constitution  and of course, I would not do so as president. I will put no doctrine of any church above the plain duties of the office and the sovereign authority of the law.

As a young man, Lincoln described what he called America’s "political religion" the commitment to defend the rule of law and the Constitution. When I place my hand on the Bible and take the oath of office, that oath becomes my highest promise to God. If I am fortunate to become your president, I will serve no one religion, no one group, no one cause, and no one interest. A president must serve only the common cause of the people of the United States.

There are some for whom these commitments are not enough. They would prefer it if I would simply distance myself from my religion, say that it is more a tradition than my personal conviction, or disavow one or another of its precepts. That I will not do. I believe in my Mormon faith and I endeavor to live by it. My faith is the faith of my fathers I will be true to them and to my beliefs.

Some believe that such a confession of my faith will sink my candidacy. If they are right, so be it. But I think they underestimate the American people. Americans do not respect believers of convenience.

Americans tire of those who would jettison their beliefs, even to gain the world.

There is one fundamental question about which I often am asked. What do I believe about Jesus Christ? I believe that Jesus Christ is the Son of God and the Savior of mankind. My church’s beliefs about Christ may not all be the same as those of other faiths. Each religion has its own unique doctrines and history. These are not bases for criticism, but rather a test of our tolerance. Religious tolerance would be a shallow principle indeed if it were reserved only for faiths with which we agree.

There are some who would have a presidential candidate describe and explain his church’s distinctive doctrines. To do so would enable the very religious test the founders prohibited in the Constitution. No candidate should become the spokesman for his faith. For if he becomes president, he will need the prayers of the people of all faiths.

I believe that every faith I have encountered draws its adherents closer to God. And in every faith I have come to know, there are features I wish were in my own: I love the profound ceremony of the Catholic Mass, the approachability of God in the prayers of the Evangelicals, the tenderness of spirit among the Pentecostals, the confident independence of the Lutherans, the ancient traditions of the Jews, unchanged through the ages, and the commitment to frequent prayer of the Muslims. As I travel across the country and see our towns and cities, I am always moved by the many houses of worship with their steeples, all pointing to heaven, reminding us of the source of life’s blessings.

It is important to recognize that while differences in theology exist between the churches in America, we share a common creed of moral convictions. And where the affairs of our nation are concerned, it’s usually a sound rule to focus on the latter on the great moral principles that urge us all on a common course. Whether it was the cause of abolition, or civil rights, or the right to life itself, no movement of conscience can succeed in America that cannot speak to the convictions of religious people.

We separate church and state affairs in this country, and for good reason. No religion should dictate to the state, nor should the state interfere with the free practice of religion. But in recent years, the notion of the separation of church and state has been taken by some well beyond its original meaning. They seek to remove from the public domain any acknowledgment of God. Religion is seen as merely a private affair with no place in public life. It is as if they are intent on establishing a new religion in America the religion of secularism. They are wrong.

The founders proscribed the establishment of a state religion, but they did not countenance the elimination of religion from the public square. We are a nation "Under God," and in God, we do indeed trust.

We should acknowledge the Creator as did the Founders in ceremony and word. He should remain on our currency, in our pledge, in the teaching of our history, and during the holiday season, nativity scenes and menorahs should be welcome in our public places. Our greatness would not long endure without judges who respect the foundation of faith upon which our Constitution rests. I will take care to separate the affairs of government from any religion, but I will not separate us from "the God who gave us liberty."

Nor would I separate us from our religious heritage. Perhaps the most important question to ask a person of faith who seeks a political office is this: Does he share these American values: the equality of human kind, the obligation to serve one another, and a steadfast commitment to liberty?

They are not unique to any one denomination. They belong to the great moral inheritance we hold in common. They are the firm ground on which Americans of different faiths meet and stand as a nation, united.

We believe that every single human being is a child of God we are all part of the human family. The conviction of the inherent and inalienable worth of every life is still the most revolutionary political proposition ever advanced. John Adams put it that we are "thrown into the world all equal and alike."

The consequence of our common humanity is our responsibility to one another, to our fellow Americans foremost, but also to every child of God. It is an obligation which is fulfilled by Americans every day, here and across the globe, without regard to creed or race or nationality.

Americans acknowledge that liberty is a gift of God, not an indulgence of government. No people in the history of the world have sacrificed as much for liberty. The lives of hundreds of thousands of America’s sons and daughters were laid down during the last century to preserve freedom, for us and for freedom-loving people throughout the world. America took nothing from that century’s terrible wars no land from Germany or Japan or Korea; no treasure; no oath of fealty. America’s resolve in the defense of liberty has been tested time and again. It has not been found wanting, nor must it ever be. America must never falter in holding high the banner of freedom.

These American values, this great moral heritage, is shared and lived in my religion as it is in yours. I was taught in my home to honor God and love my neighbor. I saw my father march with Martin Luther King. I saw my parents provide compassionate care to others, in personal ways to people nearby, and in just as consequential ways in leading national volunteer movements. I am moved by the Lord’s words: "For I was an hungered, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in: naked, and ye clothed me …"

My faith is grounded on these truths. You can witness them in Ann and my marriage and in our family. We are a long way from perfect and we have surely stumbled along the way, but our aspirations, our values, are the self-same as those from the other faiths that stand upon this common foundation. And these convictions will indeed inform my presidency.

Today’s generations of Americans have always known religious liberty. Perhaps we forget the long and arduous path our nation’s forbearers took to achieve it. They came here from England to seek freedom of religion. But upon finding it for themselves, they at first denied it to others. Because of their diverse beliefs, Ann Hutchinson was exiled from Massachusetts Bay, a banished Roger Williams founded Rhode Island, and two centuries later, Brigham Young set out for the West. Americans were unable to accommodate their commitment to their own faith with an appreciation for the convictions of others to different faiths. In this, they were very much like those of the European nations they had left.

It was in Philadelphia that our founding fathers defined a revolutionary vision of liberty, grounded on self-evident truths about the equality of all, and the inalienable rights with which each is endowed by his Creator.

We cherish these sacred rights, and secure them in our constitutional order. Foremost do we protect religious liberty  not as a matter of policy, but as a matter of right. There will be no established church, and we are guaranteed the free exercise of our religion.

I’m not sure that we fully appreciate the profound implications of our tradition of religious liberty. I have visited many of the magnificent cathedrals in Europe. They are so inspired, so grand, so empty. Raised up over generations, long ago, so many of the cathedrals now stand as the postcard backdrop to societies just too busy or too "enlightened" to venture inside and kneel in prayer. The establishment of state religions in Europe did no favor to Europe’s churches. And though you will find many people of strong faith there, the churches themselves seem to be withering away.

Infinitely worse is the other extreme, the creed of conversion by conquest: violent Jihad, murder as martyrdom … killing Christians, Jews, and Muslims with equal indifference. These radical Islamists do their preaching not by reason or example, but in the coercion of minds and the shedding of blood. We face no greater danger today than theocratic tyranny, and the boundless suffering these states and groups could inflict if given the chance.

The diversity of our cultural expression, and the vibrancy of our religious dialogue, has kept America in the forefront of civilized nations even as others regard religious freedom as something to be destroyed.

In such a world, we can be deeply thankful that we live in a land where reason and religion are friends and allies in the cause of liberty, joined against the evils and dangers of the day. And you can be certain of this: Any believer in religious freedom, any person who has knelt in prayer to the Almighty, has a friend and ally in me. And so it is for hundreds of millions of our countrymen: We do not insist on a single strain of religion — rather, we welcome our nation’s symphony of faith.

Recall the early days of the First Continental Congress in Philadelphia, during the fall of 1774. With Boston occupied by British troops, there were rumors of imminent hostilities and fears of an impending war. In this time of peril, someone suggested that they pray. But there were objections. They were too divided in religious sentiments, what with Episcopalians and Quakers, Anabaptists and Congregationalists, Presbyterians and Catholics.

Then Sam Adams rose, and said he would hear a prayer from anyone of piety and good character, as long as they were a patriot. And so together they prayed, and together they fought, and together, by the grace of God, they founded this great nation.

In that spirit, let us give thanks to the divine author of liberty. And together, let us pray that this land may always be blessed with freedom’s holy light.

God bless this great land, the United States of America.

 

Afraid of the “no”

200712_identify.jpgA woman’s struggle to face down social anxiety disorder.

 

Jeanne had long harbored a crush on the short Indian man who played squash at her gym. For more than a year she tried to relax and talk to him. But she usually just stared at him while telling herself “you know, you should really say something. Like, ‘Hello.’”
   
One time, she did manage to have a conversation with him. He was smiling, friendly, and seemed happy to see her. She became so tense that she could barely think. For reasons she can’t recall, she abruptly blurted out that he should just go see a doctor about his knee. He excused himself and walked away.
   
The man tried to talk to her a few more times, but each time, Jeanne was tense and terse, and each time, he backed away. Jeanne saw him one more time at the squash court, and desperately wanted to explain how sorry she was and how much she liked him. But she couldn’t, and he left.
   
That was five years ago. Just recently, they again ran into each other at the gym. He quickly left while his brother gave her dirty looks.

“You just want to cry from how tragic it is,” she says. “Even now, I can’t even say hello.”

Speechless

Today, after 11 years of therapy, numerous self-help books, and finally, a four-month class on identifying and working through anxious thoughts, Jeanne, who asked that her real name not be used out of concern for her privacy, is buoyant as she shows me around her Brooklyn neighborhood. At first she seems unfazed by the crowd in the café we head to, but after we find a table in the back, she gives stares at anyone who walks by or sits next to us. She pushes my tape-recorder behind my cappuccino and out of her view, and continues talking.

In her 40s, with brown hair and a soft, even voice, she sometimes shivers when talking about her boss or the way her chest tightens when she thinks about speaking at a business meeting. Other times she beams, as she talks about how she can finally email someone a question without being shackled by the worry that all she will get in response is a “no.”

Five million Americans are affected by social anxiety disorder each year, according to the National Institute of Mental Health. The American Psychiatric Association defines the disorder as an intense fear of a potential negative judgment, usually in a public situation.  Potential triggers could be anything from eating in public or using a public restroom, to talking to strangers or having sex.

The causes and severity of apprehension vary from individual to individual, but researcher Richard G. Heimberg, author of Social Phobia: Diagnosis, Assessment and Treatment, says that up to 13 percent of the population has some form of the disorder.

Many people are shy around those they don’t know, and get nervous when they have to speak in public. For those with social anxiety disorder, these feelings reach irrational levels. Their fears are so intense that they get nauseous while thinking of them and live unsatisfying lives in an effort to avoid them.

In Jeanne’s case, attacks revolved around dating, job interviews, speaking in public, talking to authority figures, and a myriad of other situations in which she could be looked down upon. She would frequently plan her life around avoiding her fears, often at the expense of her true desires, such as when she attended a college in the city with dreams of becoming a psychiatrist. The school wasn’t her ideal choice, but because an interview, or even a personal essay, was too frightening to consider, her options were limited.

Once enrolled, Jeanne realized that she couldn’t take upper-level psychology classes without giving presentations. Plus, her family didn’t really support the idea of her studying psychology in the first place, and she began to think that people she’d work with as a psychiatrist probably wouldn’t like her anyways. Eventually, she ended up in the history department.

Her problems continued after graduation, as Jeanne found herself terrified of changing situations, even ones that made her unhappy, for fear of new situations that could leave her exposed. She’s lived in the same apartment for 19 years, has had the same job for 9, and says she’s still “way too close” to the only boyfriend she’s ever had, even though they haven’t dated in decades. She can’t even get rid of the squash partner she dislikes for fear the new one will be worse.

“I have a hard time giving things up even if they’re negative,” she says. “It’s better to have something that’s mildly negative because the next thing might be extremely negative. It’s irrational.”

It’s not as though she’s never tried to get more out of life. But it always seemed that Jeanne’s anxiety triumphed over her ambition. She tried to get back into the health field four years ago, this time focusing on becoming a dietitian. Her beginners’ classes went well, so she then contacted nearby programs by email to inquire about taking advanced courses. When her emails weren’t answered, she gave up on the idea without attempting to call or drop by the places where the programs were offered.

Jeanne currently lives and does media work in a one-room, wooden-floor, white-wall apartment in Brooklyn, where her oversize couch doubles as a bed. She has to attend an occasional office meeting, filled with pushy talkers and irritable bosses who only want to hear good news. Just the idea of entering this melee is still enough to make her vaguely nauseous, but it is now much better than the overwhelming fear she once felt, before her recent breakthrough.

“If I thought I would have to speak … I would start to feel kind of a significant fluttering in my chest, what maybe people call butterflies,” she says. “And I’d probably get a bit of a stomach ache, and a bit of a headache, and my heart would start beating very hard. There’s a lot of tension and movement at the same time.”

When Jeanne would start to feel this way, she would find herself unable to focus and would just hope to get away without being noticed or, worse, forced to talk.

“You kind of feel frozen,” she says. According to Jeanne, social anxiety disorder can wear away a person’s self-esteem, and it can condition him or her to believe that it’s better to accept a current unhappy situation than to risk change. After two decades, she couldn’t talk to the men she liked and couldn’t imagine things ever getting better.

Ready to fail

Jeanne remembers she would often eat in the empty stairwell in high school because she was too worried to eat in the lunchroom. She never knew how to sit down and talk with groups of people, and even today, she has a hard time approaching two people who are talking to each other.

Memories of spending her childhood isolated made Jeanne decide that she could never put another person through this — Jeanne says it’s commonly believed but not proven that social anxiety is hereditary — so she decided that she would never have children. She changed her mind a few years later, but decided that it was too late for it to matter anyway.

For Jeanne, the insecurity reached beyond class and work into her personal relationships. The idea of dating once made Jeanne miserable. She’s has had only a handful of dates in the past few years and one long-term relationship. The anxiety had crushed her self-worth to the point that she assumed that if she liked someone, he couldn’t possibly like her. The only dates she could go on were with men she was uninterested in.

“I had so many fears about going on a date or dating … I didn’t even want to do it. I still don’t know anything about dating,” she says. “I feel like I’m 13 in dating situations.”

She found that sweets could temporarily make her calmer and more festive around her friends, and there were times when she combated her anxiety by eating to the point where she was too nauseous to be nervous. But the relief from her fear that food provided would never last very long.

Some of her fears make more sense than others. She hates traveling out of the city for family dinners every few months because her family has always criticized her — for everything from her weight to her shyness.

“They would say things like ‘she should have a Ph.D. by now, but she’s too shy,’” she says. “I was way too fat, I had too much acne, I was very disorganized, and the teasing about that was pretty constant. I really felt like no one in my family liked me, growing up.

“The current criticism is that … recently I’ve been told that my clothes aren’t good enough by my sister and my mother, and I just think that I’m too old to be told that,” she says. “There’s nothing wrong with my clothes, and you shouldn’t tell that to anyone, really.”

But often, her worries have seemed ill-founded and self-defeating. In college, there were many times Jeanne thought she was incapable of handling an assignment, and then she became too anxious to study or to ask the professor for help. Although she had always done well in high school chemistry, she dropped out of a college chemistry class because she was worried that the teacher would give her a bad grade. She would procrastinate as much as possible; sometimes she would be so worried about her ability to write a good paper that she would be unable to finish her assignment, and thus she would receive a bad grade, which further enforced her fear and destroyed her self-esteem. 

“Before I realized it was social anxiety, I just thought ‘I’m a big loser,’” she says, “‘I can’t make a good speech. I can’t take a test and do well on it.’ I just didn’t really connect it to social anxiety until recently.”

Interrupting the talking in your head

As bad as it got, Jeanne was never completely alone, as several of her friends suffered from anxiety as well. For Jeanne, it just seemed natural that people slow to build trust and friendship would gravitate toward each other.

Jeanne and her friends knew that something wasn’t right about their shyness, and five years ago they began reading about social anxiety. But even though she knew what her condition was called, she didn’t know what to do about it. Jeanne tried to do some of the exercises mentioned in a book about cognitive behavior therapy — a branch of psychiatry dedicated to modifying harmful thoughts and behaviors — but they seemed too difficult, and once again, she was too discouraged to continue.

She continued to live a life where she never talked to the men she liked, never spoke at work, and never went for the things she wanted. It was hard, but it seemed harder to change.

Then, about a year ago, while searching online for information about anxiety, she discovered a research clinic at Columbia University that was studying, and developing a treatment for, the disorder. She took an online self-help test sponsored by the university clinic. Intrigued by the results, and sick of how she lived her life, she enrolled in the school’s study on social anxiety, and qualified for a free therapy program.

She was temporarily given Paxil to decrease her tension, and was taught how to recognize and break down the thoughts that were leading to her anxiety. She was taught to figure out what the core beliefs behind her fears were, and then to write out and explain her feelings when she began to feel overwhelmed. One of the core beliefs Jeanne learned to rationalize away was that her crush at the gym would never find her interesting enough to talk with.

“That’s going on in your head, so you can’t have a normal conversation,” she says. She learned to give herself encouragement that related to specific, immediate behavior goals, such as “even if he doesn’t have a crush on me too, we could have a good conversation. I’m fully capable of having a good conversation.”

The program lasted 16 weeks. She thinks she’s off to a good start. Sometimes it’s hard for her to make herself meet new people, but the exercises usually help her stay in control.

Jeanne was encouraged by the program to put herself in uncomfortable situations so she can learn how to rationalize her fears. One sign of her progress is that Jeanne’s been attending meet-up groups organized on the Internet, to force herself to interact with strangers. On one of her first outings, she went to a lecture about self-promotion for introverts. The theme of the leader’s speech had been that introverted people should just accept who they are and not bother to change how they do things. After the speech, 11 group members, including Jeanne (“sitting at a table is my most fearful spot, so the idea that I was able to is great for me”), met for dinner at a Korean restaurant and gathered around a long table. The leader asked the group what it thought.

Although talking at a table usually reminds Jeanne of cantankerous work meetings and strained family dinners — situations she would have fled in the past — she found herself speaking up. And even disagreeing.

“I just talked about how you can accept yourself,” she says, “but what if you’re intensely nervous or panicked … and it does require some kind of change?”

Jeanne was encouraged that the group accepted her even though she disagreed with it. She says that she was able to overcome her shyness because the setting was very relaxed. She later used the lessons of the treatment in a much more stressful situation.

Though Jeanne gets lonely working at home, it allows her to avoid her bosses, one of whom is often angry and critical. While in the office recently, a coworker dumped some of her excess work on Jeanne. She didn’t have the time to do it, she told Jeanne, and she shouldn’t have been assigned it in the first place.

This coworker had the assignment for six months without telling anyone that she couldn’t finish it, and it seemed unfair to Jeanne that she had to do the work now. But when she asked her bosses about it, they took the coworker’s side.

Jeanne was horrified. She felt that the bosses didn’t think much of her and that her job wasn’t secure. She tensed up and was unable to concentrate for the rest for the day. When she went home, she was able to write down and work through her reaction, and she eventually realized that the situation didn’t really directly affect her anyway.

“I might write … ‘she is acting to protect herself and look good to the bosses,’” she says. “‘It had nothing to do with you or your competence or self-worth.’”

Before she had learned to think through her problems rationally, Jeanne says she probably would have been panicking for at least a week.

“I’m thinking much more in reality now,” she says. “Yes, there are these negative assessments; you’re going to have to live with them, and this is what you can do about them now. Just go forward from here. That’s all I can do.”

Dealing with the no

Jeanne recently went to an upscale Meetup.com event at a lodge. She ended up being paired with a man through one of the event’s gimmicks, where players are assigned cards and have to find their match. Although Jeanne was anticipating having a good time, shortly after they began chatting, the man’s friends called him away in a “suspicious manner. He said he had to go talk to his friend for a moment and he’d be right back,” she says. “And then he never came back.

“In the past I would have kind of held onto that as a rejection instead of thinking that I wasn’t happy about it, but it was very clear that we weren’t clicking, so it’s not really a rejection,” she says. “So I could talk myself down in a couple hours.”

Another way she’s been pushing herself to be more active has been by emailing questions to her coworkers, telling family members when they are hurting her feelings, and taking the lead in seeing if her friends want to hang out.

“A year ago I wouldn’t ask any questions. I wouldn’t invite people out. I wouldn’t invite myself over because I was afraid of the ‘no,’” she says, “and now I do it. And of course if there’s a ‘no’ I don’t enjoy it, but its fine.”

One of her friends of almost 30 years describes the changes she has observed in Jeanne:
“It has been frustrating for me, because I cannot rationalize with her about her fears and insecurities, and I feel sorry for her because she seems needlessly worried and unhappy. [But now], she seems more open to meeting people, going to new places, and generally, making herself vulnerable. She has also become very capable of poking fun at herself, and seeing the humor and, even sometimes, the absurdity of her behavior.”

“I just wish I was Bill Clinton. I absolutely do,” Jeanne says. “I would be able to do anything and not be afraid of a negative assessment. Just ‘okay, if you don’t like me, you don’t like me.’”

 

Shanti Shanti

prayer.jpg An attempt at silence.

 

I took these photos whilst in a group of college students, around 20 to not be exact, ranging in age from 18 to 25 with an even larger range in background. The daughter of the man who helped start the Somali Democratic League. The aspiring graphic designer son of Korean immigrants. The spoiled Indian daughter turned classical opera singer. The Playboy photographer’s daughter, the Brazilian grocer’s daughter, the gay hipster that tried so desperately to erase his origin and that one, the girl, the guy, the South African — so many perspectives. And then me, the Jewish, middle-class ball of optimism hoping to break herself out of her collegiate indoctrination, in three weeks, in 5 cities, in India.

They all took turns. Taking the same pictures. This is me in front of the Gateway to India. This is me in front of the Ellora Caves. This is me on the bus, all day, until I get out, for a few minutes, to take a picture myself, to complain about the food, to complain about the flies, to get back on the bus, to get back to the expensive hotel, to go to sleep, to begin again.

And so they talked amongst themselves, looked out the window and India passed them by. These new colonialists, traveling to far away lands, not for spices or jewels, but for photographs — days spent earning their own visages in front of architecture without understanding. Not seeing people, seeing Steve McCurry and Said’s Orientalism, buying, stealing it to bring back to their friends, to impress them with their wealth of imperialistic pictures. I was there. I took this photograph. My face in front of the Taj Mahal.

These photographs were my attempt at silence. I couldn’t believe what I had joined — a band of cultural ignorants. I wanted to see India, be swept up in her smells and dreams — read the paper, hear the people and I tried. This was the best I could do. Shanti Shanti. India is not a photograph.

[Click here to enter the visual essay.]

 

Obama and me

200712_obama.jpgThe feeling was mutual, when it came to getting fired up.

 

Barack Obama has come too close for comfort. I went to his rally for just one reason: to shoot an assignment for my photojournalism class. But when I saw him, my imagination began to take hold. I was struck by his sharp jawline and enrapturing white smile; I was smitten by his charming baby face and charismatic air.

As he looked out at the crowd, I swear our eyes met for a second. I told myself I was just imagining this momentous connection. But I know what I felt was real. I left the rally blinded by my own infatuation and knowing my feelings for him would likely go unrequited.

Then the following day there was an email from him in my inbox. It began: “I’m just leaving New York, and you’ve got me fired up.”

I thought I was the one getting fired up, but apparently the feeling was mutual. I saved his email in my inbox, but did not respond. I did not want him to think that I was that easy or to immediately set myself up for heartbreak. I resolved to play hard to get, so he would not lose interest.

A few days later he sent another email. This one addressed me by name and told me about his appearance on The Tonight Show with Jay Leno. The email also asked me to donate $25 to his campaign. This was a little off-putting; we had not even officially met, and he was already asking me for money? But I tried to ignore my initial frustration and reminded myself that, after only a brief encounter, I had already received two emails from Barack! Not even men I’ve dated have been this straightforward. I was charmed by his frankness, his apparent distaste for dating games. Flattered, I kept my emotions in check — and again did not respond.

But I secretly searched for him on MySpace. I sifted through a bunch of impersonators until I found his official profile. But instead of finding common interests in sports and music, as I had expected, I found: “Status: Married” and “Of all my life experiences, I am most proud of my wife Michelle and my daughters Malia and Sasha.”

Married? How could he do this to me? I felt as though someone had torn out my heart and thrown it against a wall. I’d dreamt of our dinners together in the White House and of knocking on the Oval Office door to see how his day has been. How could he be so heartless as to string me along like this?

I went for a long walk to clear my mind. When I came back, I looked at my computer again, hoping for answers. And there it was — yet another email from Barack. He addressed me as “Dear Leslie.” He still remembered my name!

This time he asked for $100, because he did not have as much money as Hillary Clinton.

“The bum!” I thought. “How could he be so brazen to call me his ‘dear’ and hit me up for money again?”

I was fired up all right, but this time with anger, thinking of his poor wife and kids, and how they would feel if they knew about his emails to me. Then I got an email from Kristina from Kansas, a regular voter like me, reinforcing Barack’s request for money. It was then that it struck me. Barack was not emailing only me; thousands of people must be feeling my same heartache. Our personal connections to Barack were all feigned. We were all prey of a heartless campaign monster.

This new revolution of campaign propaganda is getting much too close for comfort. The personal space between public figures and private business is closing way too fast, and the media we depend upon for personal communication are being invaded. We’re letting candidates move more deeply into our lives — and falsely into our hearts — than they should ever be allowed to come.

 

Riding toward new perceptions

200712_OTS.jpgJonathan Mooney chronicles his road trip in his book The Short Bus: A Journey Beyond Normal.

Admit it — you see a short bus and you pretty much think you know the kind of kid who is riding in it. Jonathan Mooney is not your average short bus rider though — wait — maybe he is. As a child, Mooney, an Ivy League university graduate, was diagnosed as dyslexic and labeled a severely learning disabled student. As he grew up, he was taunted and teased, made to feel inferior and inadequate by teachers and school administrators, and struggled with his identity and with where he fit in.

Now an adult and still processing the childhood experiences in which he heard, directly or indirectly, again and again, that he wasn’t normal, Mooney decided to take a road trip — on the short bus, of course — to meet fellow children and adults negotiating similar terrain. He has chronicled his experiences in The Short Bus: A Journey Beyond Normal.

In this cross-country jaunt, Mooney’s book goes beyond memoir/travelogue to include brief asides on the history and the current use of various labels. In the process, he explores what it means to be normal, to be different, and to fit in with our culture and our society.

To Mooney, even a label as innocuous-sounding as “learning disabled” is fraught with unspoken meaning and judgment, the impact of which might not be realized by many people: “The label ‘learning disabled’ may seem minor in a world full of labels, but in the context of normalcy and self-acceptance, it matters deeply. A kid who on every other level appears normal and could pass for normal is pulled out of the crowd and told, in essence, that he isn’t right, isn’t like everyone else.” It’s this message — which sets a child up for a pattern of failing to meet the cognitive expectations of the education system — that has long-lasting repercussions.

In Mooney’s opinion, placing the blame for shortcomings in academic achievement squarely on the shoulders of children and their parents deflects attention away from shortcomings in the accepted standard of intelligence and learning. Medicalizing variations in learning styles and abilities shunts parents’ attention to their child’s neurological defect or deficiency instead of allowing them to see the big picture: that perhaps the problem isn’t with their kid, but with the way our culture views intelligence.

Focusing on de facto case studies of a diverse group of people with cognitive differences, Mooney’s day-in-the-life observations are compassionate yet brutally honest — with himself and with his reader. He cuts himself no slack in admitting his own discomfort during his first impressions of Ashley, a deaf and blind child. He wonders at her ability to learn, believing that ability to be one of the primary criteria for defining what it means to be a valuable person, and finds she exceeds his expectations in more ways than one.

From troubled children whose educational needs are not being met by the school system, to adults who’ve never received a formal diagnosis of any kind but who live life according to their own rules, The Short Bus offers readers a close-up of how students and adults labeled as learning disabled assert their own identities beyond established societal expectations. For example, Mooney meets up with his old friend Kent, who was labeled as having attention-deficit hyperactivity disorder (ADHD) but who managed to do a 24-hour comedy routine. This leads Mooney to ask the question: If the guy has no attention span, how could he do anything for 24 straight hours? Wouldn’t that indeed require a great deal of concentration and attention?

Mooney, also the coauthor of Learning Outside the Lines (Fireside, 2000), loses his narrative focus a bit about three-quarters of the way through the book, when he arrives in the Nevada desert for the annual Burning Man Festival: “Here, I thought, I would let go of these old selves. But first, I had to experience being someone new, living without regard to the norms, for the next five days.”

But even in a place like Burning Man, there are norms; even in a society without rules, the community still self-organizes into a place with cliques and “cool kids,” much to Mooney’s surprise. “I felt increasingly desperate to fit in at Burning Man and it showed.” Mooney gets a Mohawk haircut and finds out what millions of women already know: A new haircut really amounts to no more than a new haircut; no matter how good it looks (or doesn’t look), you’re still the same person walking out of the salon that you were walking in.

“I had traveled all this way, only to find myself at the end of the tunnel, no different.” This one statement risks undoing all Mooney has done in his book up to that point — his rejection of the standard of normalcy, his advocacy that our culture increase its tolerance and understanding of cognitive differences and abilities. Here, Mooney is showing that he’s just as preoccupied with being normal as anyone else is — which is, ironically, totally normal.

The final stops on his short bus journey bring Mooney back full circle, helping him learn to expand his definition of normal, as his Uncle Bill put it, and leading him to affirm his identity as a short bus rider, on his own terms, once and for all. In the process, he leads readers to re-examine how they think of people with diverse abilities and the way we, as a society, treat them and allow them to be treated.

Mooney’s writing style is affable and easy, and pulls no punches, even when events paint him in a not-so-flattering light. His persuasive arguments prompt self-examination in the reader, and support new ways of thinking beyond the traditional education/intelligence standard. While I found the ending to be a bit flat, overall, The Short Bus: A Journey Beyond Normal is a powerful book that offers readers a road map for exploring our culture’s preconceived notions about abilities and labels.